Building My Wings (part 3)
From a contact of my friend, Katie, I was afforded an opportunity to house sit for a couple, John and Marilyn, who would be fishing in Alaska during the summer. Marilyn who interviewed me was a daughter of friends of Katie and Duane. The small two-bedroom house was perfect for me to be in at that time and was in a good location. I stayed for rent-free and used food that was there.
The house was located in Greenwood, a nice neighborhood in Seattle’s north end. It was in between two bus lines that ran frequently, north and south, and was a few blocks away both to the west and to the east. There were also express buses that ran during peak hours. After having a job where I was confined all day and all night, I appreciated having the freedom to come and go as I pleased without asking for permission, such as to job interviews, community events, picnics, and hikes.
Originally I was responsible for two dogs until the younger and active one escaped from the fenced yard and ran away for good. I went all over the neighborhood looking for the dog without any luck. I was worried since I felt responsible and concerned how the John and Marilyn would feel over the loss of their dog. I called Marilyn’s mother and explained to her what happened. She realized that it wasn’t my fault and told me not to be to worry. Marilyn wrote to me from Alaska after she had heard and also told me not to worry. She expected that the dog might jump over the fence since she was very hyper and ran and jumped all over people. I felt better and was relieved of my guilt.
The remaining dog that I took care of was such a contrast to the other one. She was getting old and had a thyroid deficiency that caused her skin to produce excessive oil and lowered her energy levels. Every morning I gave her a thyroid pill in her food. I gave her frequent showers outside with a hose for skin problems including eczema. I didn’t mind the extra things I did for her, due to her medical condition, since I loved her so much and enjoyed her company. Whenever I went away for overnight or the weekend, John’s parents, came to pick up the dog and brought her back when I came back.
I also took care of a long-haired male cat. He was very friendly and jumped on the bed to lie besides me at night. It was so good to have pets around since I was living alone without any human companionship as they helped fill in the void of being loved and accepted unconditionally regardless of my disability and place in life.
I slept in the master bedroom. During the day after my long walks when I didn’t have any place to go, I spent time in the second bedroom, which was set up as the sewing room, drawing and sewing. I had Bob set up my drawing table that Larry had made me when I stayed at his place. I set up my new compact stereo I purchased with some of the money I saved from working for Elva to have music since the stereo system in the living room was too far away for me to hear. With my new gift to myself I recorded some of John and Marilyn’s records on tapes so I could take the music with me when I moved on.
Periodically Marilyn’s mother and her youngest daughter from West Seattle called me and dropped by to check on the house to make sure everything was okay. I always cleaned the house before they came so they would see it looking at it best.
The daughter, Joann, who had just graduated from high school, was born with one of her hands missing and had a metal claw attached to the stub on her arm to enable her to maneuver things. Joann and I seemed to hit it off well with our mutual understanding of growing up with challenges though completely different in nature.
One evening I applied for an attendant care job for a young quadriplegic woman who lived in Shoreline. She had been severely injured in a diving accident in a swimming pool. Since I wanted a job I told her that I would be willing to obtain a driver’s license as long as I would be provided with a vehicle. She liked me and hired me. The next morning I went there for training by the attendant who was leaving. I figured that since I was only a few miles away I could do both live-in chore services and house sit. I thought that I could check on the Greenwood house once a day during my morning jog.
Right after the training I got together with people from WPAS for lunch out and mentioned to them about the job. They suggested that I decline on the job offer since it would be too much to do both. Since I already had committed myself to house sitting and couldn’t get a replacement easily with the couple being away in Alaska, I was obligated to stay in Greenwood especially with pets to care for. I called back as soon as I got home and canceled the job offer. I felt sorry that I needed to back out after having wasted the few hours of training.
By being in Seattle it was not only easier for me to go places by public transportation it was also easier to get rides with the Mountaineers for hiking. I had joined that organization for outdoor recreation in August of 1981. When I lived in White Center, even though it wasn’t far from Seattle, I had difficulty getting rides or even meeting my assigned driver to hiking trails since I was out of the way from the major freeway (Interstate 5). I was able to go hiking twice while I lived at White Center when someone from my group just happened to live only blocks away from me and took me to meet our driver. Another time my driver was willing to go out of the way to pick me up.
At least, when I hadn’t been able to get rides to the mountains for most of the outings I signed up for, there were evening slide shows by the Mountaineers I was able to go to. I didn’t have any fear of walking from the bus stop alone late at night even when I had close to a mile to go such as when I stayed with Bessie and Louis. I felt very safe in areas such as White Center and Greenwood. As I didn’t have any money for travel and couldn’t go to many places without a car or rides, watching slides of various places in Washington State and around the world was the next best thing to visiting them. I loved looking at pictures and seeing what different areas looked like.
While I was in Greenwood since I was located much closer to the interstate and right in Seattle I was able to get more rides to Mountaineer activities. Unlike when I lived further away, I was able to go on most things that I signed up for. Through out the summer of 1982 when I was twenty-five while I house sat, I went on several day hikes and a few weekend camping outings in the Cascades Mountains.
Besides weekend activities, the Mountaineers had things going during the week such as mid-week day and evening hikes and classes in folk dancing and trail safety. Mid-week day hikes had been nice for me to do on some of my days off when I was in Woodinville. I went on two hikes during the six weeks working for Elva.
During the summer, evening “owl hikes” worked out very well for me. These outings included short hikes on trails relatively close to Seattle that began early in the evening and a cookout for dinner when permitted. Often we headed back to the cars when it started to get dark and needed our flashlights–hence “owl hike.” Often I was driven by a married older British man who lived only two miles south of me in the Phinney Ridge neighborhood in Seattle where the Woodland Park Zoo was. He was very friendly and never wanted me to reimburse him for gas except for a long drive when he drove me for a day hike. We went to small mountains, city and state parks, beaches on the Puget Sound, and large water falls.
Hiking was excellent for both my body and mind as it strengthened my body and calmed my mind. Simultaneously I felt greater vitality from hiking. Admiring the scenery and wildlife was meditative and rejuvenating to my mind. I became even more focused whenever I came upon photo opportunities for me to take pictures of close ups and open vistas, with my new SR 35mm camera with a micro-35-70mm lens that my father had sent me money for. Whenever I saw the beauty of nature all around me I felt myself merging and become one with it. This had helped dissipate stress in my daily life and was very soothing. I especially needed it when I went through more stressful times in my life.
When John and Marilyn came back from Alaska in September of 1982, I needed to move and found a room for rent. This was a very stressful period in my life when I was faced with more uncertainties of where my life was going. I had hoped that I would have been employed by the time the house sitting ended and I could pay rent somewhere again. I was concerned that my temporary job in chore services might be taken as proof that I was employable and I might be denied of subsequent requests for Public Assistance for the Unemployable that I had been receiving before I worked for Elva. A few weeks later, it was approved for a few months more. Without a job or any government funds I wouldn’t be able to afford rent on my own. I didn’t want to depend on my parents for rent money or my mother and Tom or Bob and Jean are forced to take me into their houses to become a burden to them if I couldn’t make money.
To make myself more marketable, in October of 1982, I attended a seminar by the Resources for the Handicapped for intensive training in caring for people in wheelchairs including those with quadriplegia. It took included two Saturdays and a few evenings in between. I felt that the knowledge would give me an added advantage for job prospects.
With what seemed as perfect timing a contact I had made provided me with a housing opportunity. I met Vicki (not her real name) at a presentation on the history of woman’s labor movement. When I told her that I drew, she asked me to design a logo for her window washing business. When I called her about the project and mentioned to her that I needed to find a place to live, she had two rooms available in her house and rented them. She picked me up to show me the rooms she had available.
I had a choice of two rooms, the recreation room with three of it walls in windows of the front of the house or a regular bedroom facing the back yard. I chose the latter since it was less drafty and warmer. I liked it that my room had hardwood floors unlike the vinyl floor in the recreation room. It was unfurnished, but had an old dresser, so Bob and Jean loaned me one of their spare mattresses with bedding.
Vicki, who appeared to be in her fifties, apparently had neurosis that might have been related to her hypoglycemia. She was the most demanding and particular of any of the other people I had stayed with. She set up a crazy household chore schedule that rotated monthly. Whoever had her turn up did all of the general household chores for the month and wouldn’t be expected to do any of them in the subsequent months until her name comes up again. I didn’t like that system with its all or nothing approach. I preferred that the responsibilities would be more evenly distributed. I also felt that Vicki was too fussy about my cleaning. Whenever I left behind a single crumb she got on my case and demanded that I wipe it up immediately.
I shared the kitchen with Vicki and her other boarder who was a nineteen-year-old woman studying nursing. We each prepared our own meals and were provided with a shelf in the cupboard. Vicki didn’t let anyone use her things such as dishes, pots and pans, and small appliances. We each had to supply every thing for cooking and eating. Luckily I already had the basics though Spartan, an old beat-up skillet from a rummage sale, a mess kit from Joann, cake and cookie pans that I bought while in White Center, glass jars to use as mugs, a place setting with one plate I had found and several plastic bowls, and a few spoons. The young woman and I had a refrigerator and the second bathroom to us since Vicki had her own.
One thing that ticked me off the most with Vicki was when I arrived home from an evening out to find a note with my food dehydrator unplugged even where the fruit still had long way to go. She wanted me ask her permission first to use it and didn’t want me to use it in the house. I got angry that she turned it off without asking me. I responded by turning it on again since she was in bed. By the morning it was turned off. She said that if only I would talk to her then she would let me plug it in the back yard.
I got so mad that I lost my temper and yelled and cursed at her. I rarely lose my temper since I am generally very slow to anger. I tend to be even tempered. It is under rare situations that when I am under a lot of stress and at the same time being under a lot of pressure to accommodate for others that I am in danger of losing it. It was a very stressful period of my life and I was forced to accommodate for Vicki since I was staying at her house. It is very humiliating whenever this happens and I have a bad temper.
To continue drying the flat of pears I had bought at a produce stand I called John and Marilyn, whom I house sat for, since they lived very close and were a straight shot by one bus, and brought the food dehydrator with pears to their place. Luckily they were very nice and were willing to help me.
It was too bad that I didn’t realize how intrusive the device was especially with the constant humming noise by the fan going non-stop. I was so used to using anything I wanted at any time I pleased. Since it was Vicki’s house I should have spoken to her about using anything that was so intrusive as to be on for hours and hours up to as long as twenty-four hours. It was shortly after this incident when I had time to think about it that I came to the realization of how imposing this was. It was a good learning experience even with the suffering.
Until I moved into Vicki’s place, I had considered myself rather easygoing with the other people I had stayed with including, both of my parents, Bob and Gail with their spouses, and friends. I was used to being allowed to do things my way since they never placed unreasonable demands upon me. By the same token, I never made great demands and always let others have their ways. I always hated to complain since it is disruptive to building peace. It wasn’t that Vicki was a bad person–it was just that I was ill prepared to deal with her demands that I had never been confronted with by anyone else. I had learned to become more considerate in new situations and be prepared the each person is different and could place demands that could catch me off guard.
As my stress levels climbed up from dealing with the new situation which was incompatible and the uncertainties of my future, I suffered psychosomatic disorders–digestive problems with frequent diarrhea. Throughout my life whenever I was under greater distress than usual, I would have a much harder time digesting food. There is definitely a strong interrelationship between the mind and the body. It is common for individuals with autism to have weaker digestion due to greater amount of potential stress in daily living.
After living in Vicki’s place for two months, I moved out and had Bob store my belongings since I had planned to go to Maryland to spend Thanksgiving and some time thereafter with my folks. I was feeling discouraged since I was already twenty-five years old and still haven’t been able to land a permanent job. I thought that maybe I couldn’t make it in the Pacific Northwest and should maybe move back to Maryland so that my mother and her husband could take me under their wing when things would get tough, such as if my public assistance would stop.
Even during my darkest moments, I never wanted to leave the West Coast since I had more exploring in the area to do and I was very close to my brother. I visited Bob and Jean almost every week with overnight stays. Whenever either of our parents visited us, I stayed with Bob so we could all be together.
During Thanksgiving week I stayed with my mother and my Japanese stepfather, Tom, in the Rockville condominium. It felt so good to visit family during my troubled time. They wanted to help me as much as possible and looked into a highly rated vocational and residential program, the Community Services for Autistic Adults and Children. The main problem was that with high demand and not enough openings the waiting list to get in was very long. I had agreed to check things out if my mother and sister did the searching. That didn’t mean that I was obligated to stay in Maryland for good.
For several weeks in December of 1982, I went to stay with Gail and the girls in the attic apartment in Brookline, Massachusetts. That location was in an affluent area with a highly rated school district, close to downtown Boston. Almost everyday I walked through different streets that I hadn’t been to before to see something new.
To keep myself busy while I was there, I did embroidery, drawings, and reading. The drawings I worked on were on special paper with colored marking pens that were included in a kit that Gail purchased and were sent back the completed drawings to the company to be made into plastic plates. I drew still-lives and abstract designs.
As I looked through the selection of Gail’s books, I came upon nutrition books that I was very interested in–Let’s Eat Right by Adele Davis and a paperback guide to fasting. I felt a need to gain more knowledge about nutrition and diet to apply to better health. The low purine diet that I had tried for over two years didn’t work out too well for me. It was too restrictive especially limited in the protein sources. Since basically the only high protein foods that were allowed were dairy products and eggs, I consumed large quantities of these foods that could do more harm than good. After experimenting with that diet for over two years, I had evaluated the effects and I didn’t notice improved health that was the main thing that I was striving for.
Actually several months earlier during the summer of 1982 while I was house sitting, I began to suspect that dairy products were culprits to some of my health concerns, such as food sensitivities that caused sinus and digestive weaknesses and had cut back on them. After one week of eliminating dairy and substituting nutritional yeast in hot cereal, my environmental sensitivities, such as to weed pollen and the cat I took care of, were almost all gone. I barely felt any congestion.
As I looked back on the previous two years since the fall of 1980, I noticed that my sinus and throat congestion that I attributed to environmental factors had gotten worse with increased consumption of dairy products. In spring of 1981 while I was staying with Katie and Duane, a young woman who worked with their son on several weekends and was a strict vegetarian told me how dairy products could cause excess production of mucus in the body that could lead to allergies and sensitivities. Even though things made sense to me and I wanted to believe her, I was afraid to eliminate them from my diet and to impose a greater restriction. I was concerned with further protein limitations that I might not get enough, though I cheated occasionally and had whole wheat breads, tofu (soy), and a little bit of fish. I wanted to try one diet at a time for a while so I could more effectively evaluate the effects.
When I had read several magazine articles about food sensitivities which attributed an array of health problems due to foods with dairy and wheat listed as the most common offenders, I began to suspect that perhaps I had been reacting to foods without my awareness throughout my life which might had affected my brain to manifest autistic symptoms and my digestive system.
Perhaps I had gained an explanation for my early childhood concerns, such as frequent vomiting with low body weight and a learning difference. For example, as an infant, I was nicknamed “cheese factory”–based on vomiting frequently, and it resembled cheese curds. I had problems with digestion. I had difficulty of keeping food in. I was skinny throughout my infancy–I never did fill out like healthy babies should. I suspected that I was highly sensitive to cow’s milk as I was bottle-fed and it was considered good food for babies. I learned that dairy is not good for many people for various reasons–food sensitivities, allergies, and lactose intolerance. I did better without it.
In addition to finding food sensitivities, I had increased the use of garlic in foods for the health benefits that were touted by nutrition books. During the early eighties I had consumed about one to two gloves of garlic in salads and beans everyday. Besides the health benefits for the circulatory and immune systems, I had always loved the flavor of it. The problem was that I had consumed so much of it as to cause me to smell strongly of garlic that was socially repulsive in the United States. It was when I visited my family in the fall of 1982 when my sister had pointed out my strong odor that I began to greatly reduce the consumption of garlic to eliminate the smell and make myself more acceptable to the American society. I also included dark green leafy vegetables whenever I used garlic to help counteract the odor.
When I read about the link between stress and vitamins–particularly B-vitamin complex and vitamin C–in Let’s Eat Right, I became convinced that treating high blood uric acid level, which could be stress related with a highly restrictive low purine diet was not the answer, at least for me. It was an example of treating the symptoms rather than getting to the root cause of the problem. Perhaps my high stress levels could be the result of vitamin deficiencies. Some individuals, especially those under greater amount of stress, tend to burn up greater amounts of certain vitamins–vitamins B and C. So in hope of lowering my stress levels more effectively, I began taking mega-doses of these vitamins along with high potency multiple vitamin and mineral pills. With this program I felt ready to leave behind my experimental diet and increased my consumption of beans, whole wheat, and added back some meat but not nearly as much as I had used before the eighties. I still preferred to eat vegetarian whenever I was home.
After my visit with Gail and the girls, I stopped in Pennsylvania to see my father on the way back to Maryland by train. I had decided that I wanted to give Seattle another chance for at least a few more years. I had stayed in the East Coast for two month in all, the maximum time away that my return airline ticket allowed.
Since leaving my mother’s nest and living on my own I had become more matured as I was forced to deal with the adult world myself. To fulfill my needs–economic and social–I needed to interact with others in the community. I no longer wanted to live in isolation as I did during my adolescence. I was afforded opportunities in social development by participation in various activities–volunteer work, parties, and hiking–where I mingled with others, besides enjoying the recreation. I learned to take the initiatives to go places to enrich my life and to learn more about the world and people.
“If any of you lack wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But, when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.”—James 1:5-
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Building My Wings (part 2)
At Katie’s place, we shared all of the food including purchases with my food stamps. That worked out very well with my diet since the household was into health food. Their interest in the more natural foods was influenced by attendants who were students at the John Bastyr College of Naturopathic Medicine. Katie’s son was put on an all-natural wholesome foods diet that excluded all additives with artificial colorings, flavorings, and preservatives to control some of his emotions and behavior. As the result over time, he became calmer and slimmer. But, by no means was his autism cured since that was neurologically based rather than metabolically based.
To shop for a wide variety of unprocessed, wholesome foods we all went to the largest food co-op in the Seattle area, the Puget Consumers Co-op, which had several stores. It was from there that I was introduced to different grains such as millet, basmati rice, and bulgur wheat (cracked). The weekday attendant, who was mostly vegetarian with occasional consumption of fish, prepared good grain dishes for everyone, such as millet/bulgur wheat combo flavored with Dr. Brennon’s vegetarian sauce that tasted almost like Worchester sauce. I loved all of these new things, especially since they are part of a healthy diet.
Based upon the influence I received from reading a few books on nutrition that promoted the beneficial effects on health from consuming raw foods that contains healthful enzymes that help aid digestion, I began to prepare and eat more salads with raw vegetables with every meal that I fixed myself. All enzymes are destroyed in cooking, since they don’t survive in temperatures over 112 degrees F. Whenever I picked up groceries, I bought as many varieties of vegetables that were in season as possible, and I ate large servings of them daily. Though I wasn’t in perfect vibrant health yet, I noticed slight improvements in digestion and my moods.
Since I was on my own and like many other young adults, I was invited to many more parties than when I lived with my parents. For example, a few times during the year, Laura invited me to parties at places where she lived with her good friend from New Jersey and a few other housemates in cooperative living arrangements. Even though I enjoyed meeting the people I spent most of the time nibbling on the food. I hardly talked to anyone. Even with the thick haze from the marijuana smoke that I was sensitive to, I enjoyed the stimulation of being with a crowd of festive folks and around plenty of delicious food to stuff myself with.
One morning in downtown Seattle as I was walking down the hill to First Avenue to make my bus connection, I bumped into a parent whom I met at WANSAC meetings. Bessie asked me if I found a room yet and if I would be interested in renting a room in her house which was in south White Center, nestled in the south end in between West Seattle and Burien close to the Puget Sound. She drove me to her place to show me and I took the offer, because it was in a nice area, away from the big city, yet there was sufficient enough bus service. For weekend and evening use, I had to walk a little bit to a bus. I missed the more open spaces and the less density that were further away from Seattle. I didn’t feel quite ready for the big city living yet. From what I had learned in my prior experience, I had informed Katie sufficient time well in advance of the move, at least a week.
Whenever I went to Seattle on weekday mornings I took a commuter bus that I caught two blocks from the house. During off-peak hours I had to take buses that required more walking, twelve blocks east or fifteen blocks southwest in West Seattle. When I had been living there eight months, a bus was added to provide more regular service on off-peak hours that I caught two blocks away like the commuter run.
Bessie had two daughters. The older daughter graduated from high school in June of 1981 shortly after I moved in, appeared to be without a disability. She lived on her own close to her mother’s place. The younger daughter, who was almost thirteen and fathered by a poor man in a small trailer, was very smart with health issues. Bessie met her third husband, whom she bought the house with, and fostered his older daughter. It worked out very well that I lived with them since they were able to put up with my differences and challenges.
Even though I was contented about to stay with Bessie and Louis, I visited a few group homes for those with disabilities to see what they looked like. I went to the Liberty House during their open house, where the secretary of WPAS and my acquaintance with juvenile diabetes lived with a few other adults. It was located in Ballard, Scandinavian neighborhood in Seattle. Besides viewing the rooms, I loved having the refreshments.
When there was an opening at another group home for about six adults located in the Twin Lakes area of Federal Way, a community close to the sound about twenty-five miles south of Seattle, I was driven there to take a look at it. That house was too far out of the way for regular bus service on the weekend and evenings for me to even consider.
I felt like that I was becoming popular with WANSAC, because two other sets of parents invited me to dinner at their homes so they could become more acquainted with me. While I was at the open house at the Liberty House, a couple from the autism society who had an adult son with autism and lived in West Seattle drove me home, since I wasn’t too much out of the way. During the spur of the moment, we stopped in their place that sat on a steep hill overlooking the sound, for dinner before they drove me home.
Another mother from WANSAC, who lived in North Seattle and had a thirty-four-year-old son with autism and an adult daughter who lived with her, invited me for dinner that also ended up as an overnight stay with breakfast. We had such a great time that time seemed to have swept away without our realizing, and it got too late for me to go home by bus and they didn’t want to drive at night. It was very enriching to visit and get to know the parents and learn from their experiences while I practice my social skills. This was very important.
I was provided with additional opportunities to sharpen my socialization, during July of 1981 when I attended the International Symposium on Autism sponsored by the National Society of Autistic Children (NSAC) that was held in Boston, Massachusetts. I figured that I might as well go to the conference to educate myself more and visit my folks since they were both on the east coast. I went across the country from Seattle to Boston by bus, so I could see more of the nation. It took four and a half days. The main drawback was that I had estimated that the trip would be one day less since that was how long it had taken from Washington, D.C. to Seattle. So I arrived in Boston a day late and missed the first day of the symposium. Luckily the most interesting topics were on the other days. When I arrived during the morning peak hour commute I took the subway to the hotel where the conference was. I didn’t have the money for the taxi fare.
I showed up just in time for the start of the second day. I was most interested in the neurobiological findings and research. It was a good year for me to attend, since that was when scientists and doctors from around the world came up with more recent discoveries in psychobiology and medicine.
On the other hand, I wasn’t too tuned into applications theories for home and school, since I wasn’t a parent and didn’t plan to become a professional. I lacked any confidence of ever being able to work with people directly. During the presentations that least interested me, I had an even greater tendency to tune out and get into my daydreams, though I had difficulty of attending to any talks including the favorite one for long periods.
I met my sister Gail at the conference who also attended. We commuted back and forth by train and stayed with her good friend from high school, Eleanor who lived in the Boston area with her husband. This saved a lot of money on hotel stays, besides it was much more fun to stay with friends. Eleanor was so excited that my speech showed a great deal of improvement that she called her mother in New York and had me say hello to her. Since they hadn’t seen me for fourteen years they noticed the changes in me though I still had much to work on my speech which still was diffluent. It felt good to be complimented on my achievements.
At the conference, a woman at the registration desk called me over to introduce me to a woman who was interested in meeting someone with a personal experience of autism. Jean L. was eager to see and hear me to learn from my perspective of the disorder, especially since none of the presentations included any first-hand accounts of autism. During the early eighties we still only knew a little about the puzzling disability and assumed that individuals with autism weren’t capable of giving speeches in front of a large audience. Jean took me out to lunch to become more acquainted with me.
She was so impressed with what I had overcome with my disability, compared to what she already knew about the disorder that she wanted to hire me as a camp counselor for a few weeks later in that summer at a summer camp for children with autism. The camp was directed by her, near where she lived in Rochester, New York. This seemed like it would be a good experience for me to work with the kids and visits parts of the state I never had been.
The major catch was that, since I was receiving public assistance based on not being able to work, my aid could be jeopardized if I took a job and the state found out that I indeed was able to work. Since the position was only temporary I didn’t want to take any chances of losing my benefits and not be able to get them again. Though I couldn’t accept the job offer, it was encouraging that there was someone who respected and wanted to hire me. This gave me a greater hope that I would be employable by somebody. During our good-byes, Jean and I exchanged addresses and became pen pals for a while.
From Boston I was lucky to get a ride to Pennsylvania to visit my father by a friendly woman who lived in Delaware and had a son with autism. I met her through Gail. We left on a Saturday morning while the autism conference was continuing for its last day. That didn’t matter to me as I had received as much as I wanted. It was an all day drive from Massachusetts to Delaware where the driver lived. We stopped at Irene’s house since she was too tired to continue further to my father’s place. It was fun to spend the night at her house and meet her family and explore her neighborhood early in the morning before she drove me to Pennsylvania. It felt good to share my experience with autism with people whom I met at the conference for them to learn.
While I had spent a little time with my father after the conference as an adult, I had become more aware of his challenges related to autism. Besides his socially unaccepted habits of poor table manners and nose picking that I was aware of since my childhood, I had with a greater maturity discern the difficulty my father had in establishing and maintaining relationships.
Though he had dated several women, he wasn’t able to develop the seriousness that is necessary for getting remarried. He tended to have poor conversational skills especially on topics that interested others and not him. But, when the conversation was about his interests, he tended to talk excessively with too many details. I also had the tendency to talk about unnecessary details and not enough on what interest others. We both tended to interrupt others and not to give them a chance to finish talking. With my increased knowledge and maturity, I had gained a greater appreciation of him.
From my father’s place I took a train from Philadelphia to Washington, D.C. I realized that since I had been on my own for six months, it had become easier for me to relate to my family members on an adult level. Since I engage in more activities and was out in the world rather than just staying home when not in school in an isolated existence, I had more things to talk about to my folks as I became more mature. I still wasn’t very outgoing.
Shortly after I arrived back to Seattle, I had a series of tests done on me by the University Hospital affiliated with the University of Washington, which examined my brain and the rest of my body. I took an intelligence test in which I did well in most areas and got the highest possible score in the visual area that involved rotating complex images in my head and being able to tell them apart. But I had a greater difficulty with the verbal section where I needed a lot of time to think things thoroughly.
I had had another EEG done after years earlier during my early teens to see if my spaciness would show up as a petit mal seizure. Again the results were normal. I had thought that maybe when I spaced or tuned myself out and missed of what was said to me, that my brain went blank for a split second without realizing it as in a petit mal or minor seizure. I knew that a high percentage of the autism population do have seizures. Apparently what I had was lapse of paying attention that didn’t show up in electrical activity. I received a scan of my brain through a machine that detected oxygen levels. The results basically came out normal with slightly lower than average activity in the temporal lobe in the left side of my brain which is implicated in language including auditory processing. I also had a recall of information test that I passed. I was asked to retrieve a word or phrase from a half hour earlier.
I was given a complete physical with blood tests. I asked the doctor to include glucose and uric acids levels to see where I stood on them, though the blood readings weren’t the most accurate form of assessment. Since blood testing was the most convenient and was covered by my medical coupons, I went along with the tests. I was most interested in those chemicals with my knowledge of how hypoglycemia and high uric acid levels could affect the brain and behavior. The blood glucose count was a little bit on the low side and the blood uric acid was a little bit on the high side. But, both factors were within the normal ranges.
In addition, I had allergy testing done with the skin scratch test out of curiosity of what all of the specific things that might cause a reaction. During the pollen and mold seasons and when exposed to dusty areas and to tobacco smoke I felt congestion in my throat and sinuses. But, fortunately what I had was very mild compared to severe reactions that were characteristic of classical hay fever. I was tested for all sorts of air borne substances and foods which all came out negative. The results suggested that I didn’t have true allergies. Later on, I read that environmental sensitivity could be induced by nerves that mimic allergies. But it could differ from them that involve the antigen-antibody complex.
During the autumn of 1981, I was enrolled in the Rehabilitative Medicine Program affiliated with the University of Washington that set up several job stations throughout the campus for individuals with disabilities to access their employment skills. My placements were based on the inventory of my interests and skills. I was assigned to two job stations, medical graphics and a library in the department of nursing.
For twelve weeks, I was placed in the medical illustrations unit in the health sciences making charts and grafts with rulers and typesetting. Toward the end of my training I drew a few medical illustrations as tracings over previously done works, though I was capable of doing my own. Since the program was considered training, I worked without pay a few hours in the mornings Monday through Friday. I worked in a tiny room with my supervisor who was an older man nearing retirement. He was very friendly and always complimented me in my work and invited me to the holiday party for the staff in the graphics department. He even gave me a holiday gift that was a few fossils that he had collected. I enjoyed the job very much and hoped that some day when there would be a job opening in the department that I would be hired there.
During four weeks of my program, I was placed in a small library in the department of nursing to assist the librarian with several tasks such as filing and typing index cards. After I had lunch I worked in the library in the afternoons. I was assigned there since I had good organizational skills and a good memory for data that was very useful for this type of job. I was at that workstation for a few weeks until they ran out of work for me to do. That job was okay since my tasks were varied and the librarian and her aide were friendly women. I enjoyed doing work in the graphics much more. I didn’t mind the end of the job since I became free in the afternoons to do other things such as using the health sciences library and shopping.
When the program with the Department of Rehabilitative Medicine ended, I went to the Health Sciences Library all day, five days a week throughout the winter and most of spring of 1982. I wanted to study as much scientific information on the brain as possible in hope of finding a cure for all of my autistic characteristics and for greater vitality in overall perfect health. I read books and periodicals on medical and metabolic studies on the nervous system. Whenever I finished a chapter or an article I took notes to help me retain the information longer though I hardly was able to retain anything for long. I took a commuter bus, two blocks from my place to down town to make the connection to the university to arrive around nine o’clock in the morning. I packed my own lunch and stayed in the library until three o’clock in the afternoon. Often shortly after lunch I got so tired from trying to absorb so much information that I dozed off in a chair.
By the end of the day I hardly remember anything that I read due to sensory overload. I had difficulty in keeping things straight since I was trying to deal with too much at once. After a few months I analyzed how much information I had learned. It wasn’t very much and I realized that I had spent too much time in the library and it wasn’t worth it. Thereafter, I cut back on the number of days I went and limited myself to a few hours at a time. I went to the library only when I was in the area for other things; job interviews, evening activities, and shopping at the Puget Consumers Co-op.
Even with frequent reviewing I tended to forget everything by the next day, especially since I couldn’t apply any of the facts though I was still hopeful that I would be employed in the biology field and work in a medical laboratory. I applied for a few openings in entry positions in laboratory technology. I thought that my course work in biology from University of Maryland would provide me enough of a background to get me a job. I didn’t have any luck of getting hired. I wasn’t even called for an interview.
Even when I was discouraged of being turned down on job prospects, I always had had artistic talent to fall back on for my personal pursuits. I was notified about an opportunity to show and sell my artwork. One week in September of 1981, Monday through Friday, the Children’s Orthopedic Hospital of Seattle offered space in the lobby for people with disabilities to display their artwork. I was able to participate since I was eligible and was provided with transportation. I brought about a hundred prints from my college days and a few watercolors and paintings. I was very elated that people in the lobby during their lunch hour were impressed with my drawings and purchased around thirty of them.
Joann, a young married woman who lived near me and drove me to the hospital, helped me to man the table. She did volunteer work for the Autism Society. She and her husband lived about two miles from me in White Center. Since she loved my drawings and didn’t have much money she negotiated some bartering deals with me. I traded a few of my matted prints for old things, such as clothing and camping gear. I walked to her place a few times for our transactions. She drove me home so I wouldn’t need to carry the things back. I was thrilled to receive some sweatshirts, ski mittens, a mess-kit, and a day back pack without putting out any cash. It was a lot easier to part with my artwork than money. It was more difficult to earn a paycheck than to produce art. Even though I didn’t need the clothes I didn’t want to pass up any opportunity to barter that didn’t happen often.
One day I responded to the ad from the Seattle Aquarium that needed volunteers and attended their orientation. They wanted people to be guides for visitors, to prepare feedings for the water animals, and to do other miscellaneous things. Since I had loved animals and biology I felt that being a volunteer for the aquarium where there was plenty of life to view and study might help me get my foot in the door for possible future job openings or open doors to other places with fields in biology.
Following the general meeting, each respondent was interviewed to access interests and abilities. Because I lacked confidence in working well with people and had a speech impediment that was still painfully obvious I was assigned to a task behind the scenes organizing newspaper and magazine articles about the aquarium beginning with the planning and design drawings for construction through the dedication of its completion and its success. It was still relatively new and had existed for only a few years. As I organized the newspaper clippings into their chronological order I read them to learn the history of its inception and development that was what made the job as a journal aide enjoyable. I did that for a few months during the spring of 1982 for a few days a week until everything was in order and my move.
Since I had such a difficult time in finding employment in anything in the scientific fields I switched my focus from science to human services. People and employment agencies informed me that one of the greatest needs was in the chore services for those with disabilities as the turnover rate of workers tended to be relatively high. Since I had dealt with a disability on a personal level I had an advantage in the field. But, I was at a disadvantage of being without a car when the employer would need me to drive him or her.
I hooked up with an agency that specialized in services for those with challenges, the Resources for the Handicapped, based in Bothell, a community on the northern shore of Lake Washington. Through that agency I was sent to a few job interviews for live-in attendant care for people with various physical disabilities. I was turned down because they needed someone with a car and who could drive.
Finally in end of April of 1982, I got a job since seeking employment unsuccessfully for over a year. I was hired to provide live-in chore services for an eighty-five-year-old woman who was hard of hearing. Elva had broken her arm from a fall due to her unsteady gait and needed around the clock help. She lived in an old one-bedroom house on a main road in Woodinville, a sprawling community that was about thirty miles northeast of Seattle. I was interviewed by her daughter, Elma, who lived only about two miles away and helped out by running errands–taking the laundry and doing it at her house, shopping for groceries, and driving Elva to doctor appointments.
Since Elma was available to do things that required use of a car, I was hired. Without a bedroom, this live-in attendant position would be considered undesirable by most people who demanded having their own private space. Another aspect that was less than desirable was that the bathroom, old fashioned with an old tub without a shower, was added on to the house with a door to the outside rather than to the inside.
Since Elva was practically deaf, even with wearing a hearing aide, she had difficulty in understanding me. So, I devised some basic sign language to use in conjunction with talking. For example, I counted my fingers and then pointed to the clock to tell her what time it was or when I would be back from a morning walk. Sometimes I had a hard time in understanding her because of her pitch and quality of voice. Occasionally, it was frustrating when we had difficulty in communicating to each other, but somehow we eventually managed to get the message across eventually.
I helped her with her hygiene needs including bathing and toileting. I assisted her in getting up from a chair since that was difficult for her. I cleaned her house. I prepared meals and snacks for her that suited her standard American tastes and soft enough for her to chew with dentures. For myself I prepared whole grains, beans, and salads.
Since I didn’t have my own room I slept on the davenport. Whenever Elva needed to get up to use the bathroom, I helped her out of bed and supported her as she walked out the side door of the house and into the bathroom from outside. She was prone to diarrhea. Sometimes it was so uncontrollable that she didn’t make it to the bathroom. One night when she had an accident on the bed that was very messy, I cleaned everything and put on fresh sheets even though I was tired and needed to go to Seattle the next morning. Thereafter, I placed a bucket aside her bed to help prevent more accidents.
Even though I never complained about the unglamorous aspects of my job, it was quite an adjustment for me to make from giving up the freedom I had in coming and going as pleased. I was nervous about it until I realized how temporary my job was and appreciated the benefits more, such as making my own money and staying in a nice area which was across the street from Cottage Lake. Since I was committed to her, except for my planned time off, I wasn’t able to just take off for the day unless I arranged for Elma to come and help. But, I was allowed to go out for walks in the morning for an hour or so after I helped her go to the bathroom. She had no problem to remain seated watching TV while I was out and wouldn’t need assistance.
I jogged all over the area where there were many new developments with large homes on several-acre plots and a lot of new construction as Woodinville was growing very rapidly. I enjoyed exploring the area. I was grateful to be in such a nice neighborhood especially since I was confined with Elva most of the time. It didn’t matter that bus service was limited since most of the time I couldn’t leave the area anyway. There was a commuter bus that ran by the house and went to Seattle. That was sufficient for going to Seattle and the Eastside on my days off for job interviews, recreational activities, and visiting Bob, Jean and her girls. One Saturday when I went to my friend Laura’s good-bye party I had to walk four miles south to catch the nearest bus.
After Elva had her cast removed from her arm, she regained some of her independence. She was able to get up from the chair and toilet herself. Since I realized that she wouldn’t need me as much anymore and my job was about to end, I became more serious about finding a place to live and a job. It felt nice that I was able to be out all morning for a long walk for miles when I didn’t need to worry about being back in time to assist her to the bathroom. Working in chore services was a good learning experience in that it enabled me to develop better people skills and a greater sense of responsibility to broaden my horizons. I felt that I learned so much during the six weeks in that job.
3 comments May 30, 2008
dithorsos
Tags: Add new tag, adulthood independance explore
Transitions and Integration (part 3)
After my mother had discussions with a group of women in a Consciousness Raising support group, she gained a greater appreciation for my situation. Some of the other women talked about their teenage children yielding to peer pressure and becoming hooked on drugs. My mother was grateful that I never succumbed to drugs. She learned that adolescents without disabilities such as mine tend to be more prone to peer pressure due to a greater need to conform to what is popular for greater acceptance. I always was suspicious of all hard drugs and also even the more legal stuff, such as alcohol and tobacco. By age 14, I had already read and saw horror stories of drug use in the news. I vowed never to get involved with them. Instead, I became addicted to food and thoughts.
With my knowledge of the harm that drugs can cause, I was adamant about ever becoming involved with them. I never succumbed to peer pressure though I hardly ever hung out with the drug-taking crowd. One day when a teenage boy smoked marijuana he tried to persuade me to try one. I resisted as he harped about a mental high it can produced. I knew that such a state was only temporary and followed by a mental low. After a few minutes, I took the joint to my lips for a second without inhaling, to show him that it was the most I would try.
It didn’t make sense for me to do something that I knew would be bad just because it was popular and many of my peers were doing it. Generally, since those with autism have less of a need to conform to the society’s standards, they are less influenced by the things done by peers. That is why there is much less drug and gang activity among the autism population. Since I didn’t have many friends anyway, it didn’t matter whether I took part in their harmful activities or not just to gain more acceptances. It was always much more important for me to do what was right and avoid what was wrong than to be accepted by people by doing wrong.
In another instance when I was driven to a Seals and Crofts concert, I received a dose of marijuana from inhaling second-hand smoke. The high that I had heard about wasn’t what I felt. Instead I felt a weird form of tranquility. I felt somewhat out of touch with reality. I didn’t need this feeling since I was weird enough as it was. I was afraid that the altered mental states from drugs could ruin my mind if I was already screwed up enough without taking anything.
Though I was always wary of cigarettes, I was curious of what it felt like to smoke one when a pack of them was left by company at our place when I was fourteen. When I lit one and brought it to my lips, I started to cough like crazy. I wasn’t able to take any puffs without coughing my throat out. I put the cigarette out and never smoked again. It was hard for me to understand how others can get started and then become hooked. Apparently I was highly sensitive to cigarette smoke.
When Bob was home in Pennsylvania from school, he met his girlfriend, named Jean, at the tennis courts in our development. They both were very much into physical fitness, jogging and playing tennis together. Jean was highly intelligent, a valedictorian in her high school class and had graduated from Penn State University with honors in chemistry. She was accepting of my father and me. She had custody of her two daughters from her previous marriage. They lived only three units from us in the same cluster.
Jean’s children came to our place often to be baby-sat by my mother who was very good with them. Unfortunately, I mostly ignored them since I was very introverted and absorbed in my studies. But, I baby sat them at their place a few evenings when they were in bed while their mother was out with my brother. They played very well with Tej and Lisa when they visited us from Ohio. They were all girls and close in age. I enjoyed watching the girls running around together, though I hardly interacted with them.
In July of 1975, Bob, Jean, and her girls moved to Washington State for its recreational activities in the mountains and to live close to her brother and family. I felt sad when they left us. I missed them so much that I wrote letters to them regularly. They wrote us lovely letters. I felt that since they lived much further away than Gail and Ron, that I would see them much less often.
Jean left us some furniture which came at a good time, since my parents were planning to separate only a few weeks later. Though it was very sad that my parents weren’t able to work disagreements out for a happy marriage, the separation wasn’t a surprise and I had learned to take everything in my stride.
My mother, who worked in the library of Housing and Urban Development with the federal government in Philadelphia, was transferred to the main branch in Washington D.C. I went with her to move to Northern Virginia, outside the District of Columbia. She was much more capable of offering me emotional and social support than my father. I didn’t mind the move. We moved to Annandale, Virginia, into a lovely two-bedroom apartment with a breakfast/family room, close to where my mother could catch a bus to her job. The neighborhood was pleasant with a nice park near by.
We lived close to old friends of my childhood from New York, Rolly and Anita and their two younger teenage daughters who were in Alexandria, Virginia. We got together often for picnics in a park with community gardens where they had a pea patch. Rolly provided all of the food since he was an excellent cook and baker. They were very generous, bringing us produce from their garden and leaving us with all sorts of home-made breads and desserts. During our meals together, I pigged out as much as possible since I loved the food so much. It was my main focus of the gatherings.
I didn’t socialize with the girls much, since I was more interested in eating, studying, crocheting and listening to the adults. I brought my home work along. It was amazing that the youngest girl whom I hadn’t seen for twelve years had grown so much, from age two to fourteen. Characteristic of autism is greater interest in things than in people. When we were at Rolly’s place for home-made pizza, the girls played their rock n’ roll records which I liked. As dinner was prepared, I listened to the music and went into a trance. I tuned into records much more than to other people. I felt uncomfortable when others spoke to me when I listened to my favorite songs. It was much easier to pay attention to things than to people.
I had one year of high school left following my eighteenth birthday since I was a year behind in high school credits. I attended Oakton High School in Vienna, Virginia which wasn’t as good as Hatboro-Horsham High. It didn’t have as much of a selection of courses and levels of challenge in the required core ones, but, I was able to adjust well. I realized that each school was different.
My French class was challenging with more quizzes given orally which I had great difficulty in since I had problems with auditory processing. I felt discourage since I didn’t like to perform poorly in anything even though I did well enough in my written work to make up for my weakness to get a good grade. I thought about dropping French and discussed it with my high school guidance counselor who was friendly and caring. She encouraged me to keep up with it since it was required for admission into many colleges and good for well-rounded learning. I decided not to give up.
Another concern I had about my studies, was that I tended to get sleepy in my afternoon classes, especially right after lunch. The high carbohydrate content in my meals was factors in drowsiness, besides my natural tendency to be at my low ebb that time of the day. I worried that my performance in my chemistry class wasn’t as high as it should have been, since I had it directly after lunch when I was most tired. I read an article in Scientific American that different people function at their best during different times in a day according to the circadian rhythm. This gave me an idea of switching chemistry’s time slot with my art class that I had the first period in the morning when I was the freshest. I didn’t need to concentrate as much in art as I did in chemistry. This changing around of schedule, especially in midterm wasn’t allowed, even though both of the teachers had the classes during the alternate time slots that I wanted. I understood that switching would involve more work for the administration. So, I grinned and lived with the situation.
While I waited for the school bus to my high schools in Pennsylvania and Virginia, I had tried to socialize with my peers who were with me at the bus stops. I was painfully aware that others around me talked about relevant things much more naturally than I. So I talked about anything that happened recently that I was able to verbalize easily especially topics that were more concrete. For example, one morning I mentioned that my father had hurt his toe nail which had no relevancy at the time and didn’t seem to interest anyone, though they were polite and friendly to me. I lacked any sense of what is relevant or interesting to others which is a challenge in autism. Certain things, especially more abstract concepts, were difficult to communicate. Generally, those with autism do much better with the concrete than with the abstract.
In the end of September of 1975, Gail and family moved to our area and stayed with us until they found an apartment. Originally, they had planned to move to the west coast, but they didn’t have enough money to move that far, besides they would be so far away from the grandparents and other family members. My mother and I were elated to have loved ones live close to us and to help out with the children. It didn’t matter that our apartment was cramped with six people. We were happy to have them.
Gail and Ron found a nice two-bedroom apartment in Reston, Virginia with a lovely view of the woods and bike trails. Reston was founded as a planned community, about forty miles east of Washington D.C., with bike trails throughout the area and connecting developments, stores and homes. My mother and I visited Gail and her family often. Whenever I came, I played their records on their nice stereo and jogged on the trails that went through the woods, meadows, fields, and golf courses. Sometimes when I had plenty of time, I reached the country roads and went on them for a little while. Whenever Gail had a dog, white French poodle, I took her with me.
When Gail worked for a daycare center part time and Tej and Lisa wanted to stay home after school, I baby-sat them. Tej was in kindergarten and Lisa was in pre-school. When my school day ended, Gail picked me up at my high school and drove me to their place and went back to work. I played mostly one on one with Lisa since Tej usually went out to play with her friends in the afternoon. I tried very hard to be attentive to the girls–reading children’s books and playing simply roll-the-dice games such as Candy land with them. I was lazy when it came time to initiate more creative things to do. I let them to pick out the activities since it was easier for me and I didn’t need to think as much. Though baby-sitting was tiring especially after a long day in school, I wanted to help out since Gail and Ron wasn’t able to afford to hire a baby-sitter. I always spent the night there since it was easier for Gail to drive me back to school the next morning. When it was the weekend, my mother picked me up.
Whenever my mother and I came over during the weekend, I always reverted back into my old ways of ignoring my nieces. I was more concerned about getting as much of my studying done as possible as doing things with the children. It was much easier for me to relate to things such as school work than to people, especially children. I lacked conversational skills with the little ones. I had difficulty in doing what seems natural for and taken for granted by most mothers. I didn’t sing or kid around with my nieces. Even though I hardly talked to them and didn’t show much affection, I always loved and cared for them. I lacked confidence and sense in showing love. The higher pitch voices and faster talking of children made it more challenging to process and was much more of a strain to attend to than to older folks.
In June of 1976 when I was almost nineteen, I graduated from high school without attending my graduation ceremony. I was concerned that my mother would be too tired to take me to the event in the evening after working all day. I didn’t feel it was a big enough deal for me to go when I could pick up my diploma a few days later. My attitude was that I would be just an insignificant figure anyway and I wasn’t important enough for others including my family to watch me. I didn’t realize that with a milestone that big in my life, it would have been nice for my folks and even the other people from the school to witness the big moment of me clutching the diploma in my hands. Neither did I go to the big all-night party after the event.
A few days after the ceremony when I slept over Gail’s place for baby sitting, Gail drove me to the Oakton High on her way to work for me to pick up my diploma at the school office. First I jogged around the neighborhood for over an hour to explore that area while I had the opportunity before I picked it up. Afterwards, I walked home which was about five miles.
I was happy that I was able to graduate from high school like everyone else in my family. I wasn’t nervous about life after that milestone. I looked forward of going to college. I knew that I would do okay if I studied hard. I was much more nervous about life after college since that would be a much greater change. I had no idea what I was going to do other than art. I knew it was highly competitive and that there were limited employment opportunities in the field.
Sometimes on the weekends, my mother took me along on drives through the country roads to look at the scenery for relaxation. Whenever I went with my mother in the car, I turned on the radio for rock music without asking her if she minded. My mother let me have my way unless she had a special program she wanted to listen to on another station. I was self-centered and didn’t consider that since she preferred classical music, that I should have shared the radio more and let her listen to her stations. Some of my self-centeredness may be part of normal adolescent development, rather than all of it attributed to my disability.
Occasionally when the weather was nice on the weekend, we went on outings to explore the general area with Gail and family. We went to parks, zoos, festivals, restaurants, and sightseeing in Washington D.C. and other tourist towns. This satisfied my desire to go out and explore since I hardly ever went out with my friends. I always had a desire to explore things and places.
During the summer, I swam in the pool. As I walked though the park-like area in the development to swim, I watched many squirrels run up and down the tall oak trees.
On one evening at the end of the season, I went to a free barbeque of hot-dogs and soda pop at the pool site. Even though this was set up as a social event, I hardly talked to anyone since I was so busy eating. It was much easier to eat than to socialize. Free events where I could pig out were very appealing to me though it wasn’t appropriate for me to eat as much as I wanted since there was a limited supply and it would be better to take one or two dogs rather than four. Even though I got overly stuffed to the point of discomfort, I lacked control to stop eating since tasting delicious food momentarily soothed my nerves which were already frazzled by autism.
One day at the pool, I met a friendly girl who was a year older than I and had her own apartment in the same development. I went with her to her place were she lived alone though she had a boyfriend. We had some commonalties in that we were both artists. She did paintings too. She went to a community college. She served me a light lunch. I talked to her basically about my life and interests in a matter-of-fact manner without getting into emotional aspects. I wasn’t very skilled at expressing my feelings. I was excited about making friends with the neighbor who was close to my age. After I spent the afternoon with her, she said that anytime I wanted to see her that I could knock on her door. But, when I went to see her after a while I mixed up another building for hers and lost her building number and forgot her last name. We didn’t exchange our phone numbers due to lack of interest in building a solid friendship.
I bumped into her when I was out jogging one day. Though she was very nice to me, she wasn’t too interested in establishing a friendship with me–sort of what I expected since I had a low image of myself. She was very interested in getting to know who I was.
Though I felt too disabled to be liked and worthy of respect by most people, I felt that I wasn’t disabled enough whenever I applied for programs for those with disabilities such as special college scholarships for those with challenges. One afternoon, a woman from the scholarship program came to our place to interview me and discuss student aid. Though there wasn’t any indication that I would be disqualified, I felt that I couldn’t possibly qualify since my challenges weren’t severe enough such as someone who couldn’t walk, talk, see, nor hear.
My low self esteem caused me to feel either I had too much or too little of the problem, depending on the situation. I felt that I was in a limbo–too disabled to be normal and too normal to be disabled. Following the interview, the interviewer called to set up an appointment for me to come to her office. I told her to drop the case since I felt that I was too capable to qualify to get anything. I passed up opportunities for aid due to my assumptions that no agency would ever give me anything. I felt why would anyone want to help me?
My outlook began to appear more promising when I was integrated in regular public high schools. I felt some relief when I finally got what I had wanted for so many years–attending school and taking classes with the neighborhood youngsters. During my attendance at my first public high school for just a half a year, where I was afforded opportunities to interact with my typical peers who were good role models, I made a great deal of progress in maturity and socialization. Though I still had long ways to go to learn many of the nuances in communication and what was proper. But I continued to make steady progress as I moved on to other schools. Besides advancing in my social development, I began to form interests in a variety of academic subjects which was required in the college-bound program and became motivated to excel in them.
“Be very careful, then, how you live—not as unwise…Do not get drunk on wine, which leads to debauchery. Instead, be filled with the Spirit.” –Ephesians 5:15, 18–
1 comment April 11, 2008
dithorsos
Tags: adolescence transformation emergence
Transitions and Integration (part 2)
Our development had a pool area with sauna for use in the summer. I used both almost everyday that they were open. In addition to swimming, I began a jogging program in the summer of 1974 just after school was out. I jogged in the neighborhood almost everyday. Bob picked up on the latest trends while in college which included running. He started to jog and encourage me to engage in vigorous exercise such as jogging.
I read articles about aerobic exercise that can boost health benefits for the entire body, including the mind. This led to a fitness craze during the seventies. I noticed that I had become less constipated, though I still had ways to go since I had it bad. Since I was very interested in improving my health and stamina, I was willing to give it a try, besides enjoying the scenery in the neighborhood. Almost immediately, I noticed other benefits–greater euphoria and relaxation, and better muscle tone.
I also became motivated to lose weight so I went on a diet for the summer to lose about twenty pounds. That wasn’t so effective, since I gained most if it back during autumn. That was the last time I was on the faulty high-protein/low starch diet to lose weight, which I learned didn’t work on long term.
By the end of the summer, I was anxious to go back to school when it resumed in September. Since I was used to the more structured environments from the previous years of summer camps and being around my nieces, I felt more lonely from not having chances to interact with others much. I lacked enough social confidence to make friends that I could sustain throughout the summer.
I was excited when school started and that I began the school year with everyone else. I was able to take more year-long classes in the standard subjects and a foreign language, such as French. There was only one year that I didn’t take any art courses, since I was so far behind in my academic units and I needed to catch up as much as possible. I began to take notes as I studied and during lectures to help myself retain the information better. I started to devote much more time on my studies.
Unfortunately, I didn’t receive as much encouragement for my academic skills as I should have during my schooling prior to high school. Since the focus all through the League School was to work on communicative and behavioral skills, there was less emphasis on the academics. There was also a prevailing belief, though erroneous, that those with disabilities were assumed to be less capable of doing well in the academics even where unrelated to the disability. Studies had proven otherwise in that those with disabilities could indeed excel in any academic field when given the opportunity and encouragement.
With the prospects of college in the future and the need to challenge myself I became motivated to do well in science, language arts, and mathematics along with the visual arts. Since high school I progressively enjoyed my academic studies more and more. It had become a lot of fun to read and learn about new things. I knew that despite the societal prevailing attitude about those with disabilities not acquiring new skills as well I could perform well with motivation and a lot of work. Thus, it is very important to have as high of expectations as possible of what I could do or others with challenges could do.
I became overly concerned with my grades even though they were fine. I wanted to get straight “A”s. Though I studied as hard as I was able, I hardly ever scored 90% or higher on tests, except high school biology where I did better. I got frustrated that even with my best efforts; I only was able to get on average about 85% correct on tests in most of my classes. Test anxiety didn’t help. It was frustrating that on certain test questions, though I knew that I had studied the answers, I wasn’t able to access from my brain what I had learned. Very often within minutes that I turned in my examinations and walked out of the room, the correct answers would enter my mind when it would be too late to put these down on paper. Despite my high intelligence, I tended to think slowly which made it difficult to come up with answers on time during tests. My slow information processing slows my reading speed. Whenever I read too fast, my reading comprehension gets compromised.
Since I had low self-confidence I felt a great need to compensate for my insecurity and to prove myself to be the best student. Again with my run-away-from-the-problem mentality as my coping mechanism, I pretended that things were better. I fantasized about getting all “A”s in everything throughout the rest of high school and all the way through college.
I had even a harder time when I took the Scholastic Aptitude Test (SAT). Even though I studied all of the vocabulary and the sample questions in a book that prepares one for that college-entrance exams, I still didn’t do nearly as well as I hoped, especially in the verbal section. I had difficulty concentrating on the reading comprehension and the word comparisons. This was compounded by my nervousness from the tight time constraints. I did better on the mathematics section, though I had a slight disadvantage of not have taken geometry yet and not take any math that school year. When I took the big test, I was just getting over a cold plus my stomach was acting up a little bit. I wondered if these factors had any adverse effects on my performance. When I received my SAT scores in the mail I was upset. I scored below average on the verbal, but above average on the mathematics. I wanted to do at least as well as Gail and Bob who did very well in both sections. I was concerned that I would be denied acceptance in the college of my choice based on the test results.
Despite my weaknesses at information processing and my talent in art, I generally did very well in my take-home written assignments, except for the few instances when I misunderstood the work. For example, I used to excel in doing research papers and in my essays for my French course. I did the best when I was allowed to perform at my own pace, without worrying about getting it done in a tight time frame. One problem I had was an inability to concentrate for long periods of time. My mind had a tendency to frequently wander away from the task. Therefore, I needed to take frequent breaks.
For a little while during high school, I wrote entries into a diary. I wasn’t motivated to keep it up so it went by the wayside until I produced a little journal of glimpses of my life in 1975 as a high school assignment in my English class. I saved a few of the entries to show how I viewed my life back then. Autism is apparent in the inclusion of unnecessary details and without many emotions. I also tend to leave letters or words out as my mind races on. When writing, I always need to go back and forth and make revisions. Here are a few of them before my teacher’s corrections:
January 13, 1975
I ran out of space in my first journal pamphlet.
I feel very happy now because I love all of my courses and I can exercise much better than I used to. I started to do regular pushups a few months ago. Now I can do twelve pushups. I am planning to join the la cross team in the spring, the first athletic team I am ever going to join.
On December 31, 1974, I went with my parents to an optometrist to get my eyes checked with my parents. My vision is 20/40. I am a little near sighted. I got some eye glasses. On Sat. Jan. 11, I picked up my glasses on the way to the Abington library to take out books for my medium length composition.
For my American Heritage class, I have to write at least a five typed page composition on education around a period of 1860-1900. I have to get the information from at least six sources, not encyclopedias. The longest paper I ever wrote so far in my life time was three typed pages.
February 3, 1975
Yesterday my parents, brother and I were invited to my brother’s girlfriend’s house for dinner.
Just before we went there, I finished writing down facts from all my books for my American history report. All I have to do with it is to organize it then type it all up with the bibliography.
On Friday I took tests from both of my history courses. The test for my new course was the first test of the course.
February 18, 1975
About two weeks, I started to play hockey in physical education. I love this game. I was the goalie in most of the games. When I was first a goalie, I didn’t play the game right because I used to go away from the goal. Some of my team mates were angry at me. I think that they over acted this anger because it wasn’t so awful for me to play the game wrong for the first time. They should of explain the rules to me nicely. I am pretty good in this game.
March 17, 1975
About three weeks age, I was thinking of going out for lacrosse so I signed up for it, but Miss Nace, the lacrosse coach told me that it is very dangerous for beginners like me.
Two weeks ago, I decided to join the tennis team. When I went out for the team on the first day, I found out from my coach, that I had to get back my physical card from Miss Nace so I couldn’t go out for another practice with it do so.
I had trouble finding Miss Nace for the card for my parents to sign up for tennis and cross of lacrosse, so I missed two practices. It wasn’t bad.
The coach encourages the team to do good execises, such as toe raisers, running, with a tennis racqet hitting the ball up in the air trying not to miss it, and of couse tennis. I love this game very much. It is a lot of fun and it is fulfilling. I also made some friends on the team.
Even though I was very aware that we all have problems, in one form or another, I compared myself with other students who got higher grades than I did. I felt that as long as others have more or better things (grades, confidence, etc.) than me their challenges (allergies, less physical attributes, etc.) aren’t as bad as mine. I compared hay fever with my problems, which aren’t related at all. Since I never had the former, it was difficult for me to understand all of the suffering that it involves. I thought that if I could exchange my challenges such as inability to ace all of my classes, I would trade it for hay fever which seemed of lower magnitude, since I knew much less about it. Though I had some environmental sensitivity, it was never close to true full-blown allergies. I didn’t realize that different problems can’t be compared. This was like a comparison between two species of flowers where each their own attributes has.
I had some mental hang-ups, which are common in autism. For example, whenever anyone or I in the room or within close vicinity sneezed, it remained in my thoughts for the rest of the day. I wasn’t able to get the image out of my mind, even though the noise didn’t bother me too much, though a little bit loud sounding to me that wasn’t very pleasant. This is similar to obsessive-compulsiveness. Another hang-up I had which was related was that I used to feel uncomfortable sneezing in front of other people. Since I did it so infrequently, compared to coughing, it seemed weird to me whenever I had an urge to sneeze. Whenever I used to feel one coming, I would hold it back. I became very skilled in this, except when I had a bad cold where nothing could override any urge and when I tend to have uncontrollable sneezing fits. Even though I knew intellectually that it was okay to do it anywhere at anytime, it was difficult for me to break away from my patterns. I felt so poorly about myself that I felt I wasn’t allowed to do a natural bodily function such as sneezing.
In the high school, there was a nice woman speech therapist who worked there. I was assigned to her based on speech screenings that everyone took. The school felt that this could help my stuttering. The therapist unstructured approach helped and the more I talked the more fluent my speech became. She had me talk as much about myself and other things as I was comfortable with. I saw her about 45 minutes a week during class time for several months. Though it was a good exercise for me I continued to stutter for many more years yet. Important underlying causes were overlooked such as low self-esteem and nervousness.
My excessive concern over my studies sacrificed my social life somewhat. Instead of reaching out to my peers between and before classes like I should have, I buried my face in my text books. This caused me to pass up social opportunities. One girl, named Donna, who was in my English and history classes on American studies, was very interested in me and joked around with me. I didn’t appreciate her kidding around as much as I should have. I was still socially immature for my age. She was one of the cheer leaders and was very outgoing. Unfortunately, I wasn’t nearly as friendly to her as she was to me. I put my studies before her. She was persistent and never gave up on me.
In addition, there were several other students who were friendly to me. They talked to me during lunch. One day, during holiday break, as I was jogging in my neighborhood, one girl, at her house with her friends, noticed me and invited me in. Even though we didn’t have too many common interests and they came from a lower socio-economic background, I enjoyed becoming acquainted and feeling accepted.
I was elated when one girl, named Mary, invited me to her place. She had cystic fibrosis and was very small in stature. It was mutual understanding of enduring our respective hardships and the idea that we were considered fringes of society that brought us together. I walked to her house a few times, and she visited me once when I showed her where I lived. She once gave me a souvenir coal from one of her trips, and I fixed her lunch one time. I felt a special bond between us.
In physical education class whenever we did square dancing, I danced without a partner since there were an uneven number of people and I was able to visualize what my partner would do and move accordingly. I didn’t mind since I still felt like I was with the group and doing the same motions. This was one example of my flexibility and ability to accommodate to the situation.
I mingled with a few girls who were on the la cross team and I got the idea of joining their team, since I wanted to try something different. The sport is similar in concept to hockey and soccer but played with a net-like stick in which a hard ball is caught and thrown. When I signed up, my teacher in health and physical education, who also coached la cross, discouraged me from participating. She felt that my coordination and gross motor control wasn’t developed enough for the rigors of the game and I could be more prone to injury. I took her advice seriously and withdrew my name from the list. I was aware that my hand-eye coordination was generally a little bit off and that a hard ball that I would miss could hit me hard.
Since I still wanted to get on a team, I switched over to tennis. I had hardly ever played the game and was interested in learning how to practice and play better. Obviously, the other girls on the team, unlike me, had practiced most of their lives since their childhood. I had difficulty in keeping up with them. I was relegated to last place, and I had the lowest priority in participating in a match which was almost never. While the matches were going on, I practiced by myself, hitting the tennis ball with the racquet against the fence. It was good that everyone was allowed to play and nobody was excluded even with deficient skill.
Besides being a learning experience for me, I enjoyed the secondary benefits, such as taking the activity bus to schools for away games and to home in the early evening. It was fun going on different routes from where I usually went. After only two weeks of trying out for the team, I stopped going since I realized that I wasn’t getting anywhere and I wasn’t needed. But, nothing was wasted; since I learned that one needs to be already proficient in the sport to really participate and most importantly that I was provided with more opportunities to socialize, rather than just learning the game.
As part of my high school curriculum, I took driver’s education that was offered at the school which included both classroom and on-the-road instruction. I thought it was good for me to learn how to drive, even though I didn’t have plans to get a car soon, just in case I would need to for my independence in adulthood. I might as well take the course while it was convenient and when there was no cost to my parents or to me. In class, there was a simulator machine with controls of a car that were programmed to work along with a film on various driving techniques. Whenever any response to the film was too slow, a light would come on. All of my reflexes were delayed enough for the light to appear on every single task. It is common in neurological conditions such as autism for reflexes to be slowed as mine were.
As soon as I got my learner’s permit and before I practiced driving in my father’s car, I drove in the school’s car through the serpentine on the school property. I ran over every one of the markers. I had difficulty in maneuvering the steering wheel fast enough to make turns. I was surprised that it was my father who took me out to practice driving rather than my mother who did most things with me. I felt that it didn’t matter who went with me as long as I had the opportunity. I drove for hours at a time mostly on country roads to take in the scenery as I practiced. But, I didn’t practice other procedures that were important, such as parallel parking enough.
When I drove on the freeway to get my driver’s test, I was very nervous since that was my first time and it occurred to me that I hadn’t done parking as much as I should have. Though I scored 100% on the written part, I flunked the driver’s test. By having parked about two feet from the curb which was way to far, too many points were deducted along with other minor areas for me to pass. That was the last time I had driven anywhere. After my mother told me that many people flunk their driver’s test first time too, I didn’t feel so bad about my failure. I realized that I didn’t need a license since I didn’t feel that I would drive anyway. I thought that if I ever would need a car in the future, I could take brush-up lessons.
My folks were concerned that if I drove and got into an accident I would be in such a panic that I wouldn’t be able to handle the situation. I easily got upset when I would get into trouble. It is generally much more challenging for those with autism to handle distressful situations that happen as suddenly as accidents.
Add comment April 8, 2008
dithorsos
Tags: Add new tag, adolescence transformation emergence
Transitions and Integration (part 1)
TRANSITIONS AND INTEGRATION
Inclusion
Growing up sheltered from the world,
Where there was segregation,
For I was different with challenges,
As the reason to be denied inclusion.
As long as I attended schools only for children with challenges,
There was segregation.
As I lost contact with my neighborhood peers,
I was lead to increased isolation.
While I attended regular high school,
Where there were my peers with challenges for inclusion,
I had learn so much more from my role models,
From the benefits of integration.
Throughout my high school and college years I had developed greater interests in the academics, including science, psychology, literature, language, etc. I struggled with test anxiety as I dealt with low confidence and wanted so much to get the best grades. I tried all the time so hard to do my best in my studies. School learning was also very rewarding and fun. I discovered that regular physical activities improve my well being and enhances my brain function for learning.
I was excited about finally starting a different school. I began attending the Adams School in Manhattan in January of 1973 which was a private school for high school age adolescents with challenges. Like the League School this school provided a segregated environment, but the students tended to have milder disabilities and were more mature. It was much more like high school with older pupils and more classes being offered. Along with the basic English and algebra, and physical education, I took electives such as drawing, typing and workshop training. I was interested in learning practical skills that I could possibly apply in the job market.
The Adams School made contracts with several of the area’s businesses to provide repetitious jobs for the students in a sheltered workshop-like setting. About thirty adolescents including myself met for an hour a day in a large room, where tables were set up with the basic tasks–primarily packaging things, such as emery boards and plastic covers for record albums. We were each paid piece-meal rates, which came out less than minimum wage. We had rock music on the radio in that room which added a lot of fun to the repetitious work. I also appreciated the comrade of the other students as they talked and worked, even though I did not talk much.
One period each day, I also worked in the mail room mostly updating the mailing lists–culling names, typing address plates, proof-reading, and making corrections. I was also paid for that. This was the first time that I had done real work for a paycheck. I was thrilled though the amount was very small. Since I knew that the higher my production, the higher my pay would be, I didn’t waste any time and performed my work as quickly as possible. I liked the idea of doing things for money, though I never had had summer or after-school jobs.
Even my transportation was like I was going to and from a real job. I commuted both ways on the subway. It was much easier than going to my other school. In the mornings, I went on the trains with the peak-hour crowds. Sometimes we were packed very tightly. Often when I was crammed in the middle of the crowd while standing, I felt hands in between my legs, moving up toward my crotch. I never was able to find out who did it since it was too crowded to turn.
Unlike the League School, lunches weren’t included in the tuition, so I prepared and brought my own. I fixed a variety of entree salads and packed them in a small insulated snack jar. I took a small lunch because of the convenience of taking along what fit in that container and I knew that I could make it up by eating later when I came home from school and at supper time. While eating in the lunch room, I mingled with the other students who had the same lunch period as I. I became friendly with some of them.
I recognized several of the people with autism from the League School and from my summer camps. Two of the counselors from the Samuel Field Y camp taught in the Adams School–one of them were my English teacher. I used to have lunch with some of the familiar teenagers from my other schools.
One girl, Andrea, from the League School who was a good friend of mine, invited me to her place in Brooklyn after I left the school. I visited her by train about once a month until I left New York. She was slightly clumsy and used to flap her hands often. She was very friendly to me. Andrea was very intelligent with superior verbal skills. She was an avid reader and used to tutor children in the school on verbal skills. She was skinny from the inability of her system to absorb nutrients from food.
Like regular high school, a locker was assigned to each person. Combination padlocks were available at the school office for a deposit of two dollars. Twice, somebody picked off the lock I used. I was very irritated that someone would do that to me and make me lose both my deposits.
One good thing happened, was that, when I was in the office to get a replacement lock, I bumped into a third-order cousin on my father’s side of the family. She either had a learning challenge or a mild case of autism so she was also attending the school. I hadn’t seen her for several years. We both told our mothers. Her mother was one of my father’s aunts on his mother’s side of the family. She invited us to their apartment. I was very thrilled that I had the opportunity to see the girl who was close to my age and went to my school. The theft of my lock had led to that opportunity. I was happy to be able to turn a negative into a positive. It took the sting out of the bad situation and provided me with a sweet fragrance of the good.
Several afternoons after school, a guy from school talked and walked with me to the subway. He was two years older than I and wanted to be my boyfriend. It was short-lived. We went on a date one Saturday afternoon to eat out. I went by train to meet him in Brooklyn close to where he lived. This was my very first real date.
The main problem was that he talked non-stop and I had difficulty listening to him. I was unable to process the onslaught of all that auditory information due to my sensory overload and attention problems. He must have picked up that I wasn’t taking in everything he said to me, though I tried very hard to listen. The effect became a strain on me after just a few minutes of his monologue. The strain was compounded by not having much to say myself. At the end of our only date as I was getting ready to go home, he decided to break up with me. I didn’t blame him and I wasn’t hurt. I realized that he wanted someone to act as a sounding board which was beyond me. In a way the break up was a relief to me. I wasn’t ready yet to sustain an intimate relationship, such as having a boyfriend. Carrying on conversations wasn’t one of my fortes, one of the major qualities that enhance intimacy.
One day in the spring of 1973 when Gail was discussing the beauty of British Columbia, Canada and that she and her family might want to move there some day, I began to wonder what it would be like to live in a rural area–especially since I viewed pictures of the countryside there. I thought it would be nice to have a change. I was attracted to the novelty and purer air of living in the country. I had read several articles on air pollution in the urban areas throughout the world. I thought it would be healthier to live in rural places.
When my folks and I visited Uncle Jack and his family shortly after they moved into a lovely home nestled in a wooded area in Mount Kisco, NY, I wanted even more to move away from the big city. Though Mt. Kisco, which is in Westchester County, is only less than fifty miles from New York City, it didn’t feel that it was that close to the city.
In my school library, I read issues in the National Geographic and books that featured British Columbia. I also read articles on other countries, such as Australia and the Polynesian Islands. I looked at the map of British Columbia and located the general area where I thought I would like to live–about half way up the province in between the mainland and Vancouver Island. This interest developed as I hoped to run away from my problems. I didn’t think that my struggles would follow me where ever I go without facing them head on.
In the spring of 1973, my father received notice at work that his job was to be transferred to the Naval Air Development Center in Warminster, Pennsylvania, which is about fifteen miles north of Philadelphia, in Bucks County. It was to take effect in autumn. Whenever Bob was available on the weekends, he drove all of us to Bucks County to look at apartments or townhouses for our move. I was excited about the prospects of moving to another area. I enjoyed the ride and looking at places very much.
During June 1973 just after school was out, my mother and I went to Ohio for the summer to be with Gail and her family. My mother resigned her job to have extra time off before settling in Pennsylvania. In Ohio, a few days a week I took walks in the back roads in the area where there were still farms, open fields, and horse stables. I appreciated the beauty of countryside. It was a novelty compared to where I was brought up.
I thought of hitchhiking all the way to British Columbia, but I didn’t have it in me to do it. I was aware of the potential dangers of going with strangers and of living without money once my pocket change ran out. I gave up on my plans of moving there. I realized that the isolation would be too much to handle. I would miss my family and miss out on my educational opportunities. Besides, I was satisfied with what I had in Ohio and what I saw in Pennsylvania. Since I didn’t have a strong social network outside my immediate family due to my autism, it was even more vital that I continue to live where I could receive the support of my family.
In addition to walking, I went swimming at several private lakes in the area where Gail took all of us until she settled on one, the Stow Lake that was only about five miles from their place where she could have a family membership. There was only one public lake in the area, but it was about an hour’s drive each way and it was much more crowded. We took out a row boat at the public park once, which was fun. It was especially nice to swim on the hot and sunny afternoons. I swam mostly laps, alternating several strokes that I had used for years. I used to get into the water very slowly until I got used to the temperature of the water. Then one day I learned that by jumping into the lake quickly–getting myself wet all at once, I got the initial shock over with much faster.
I used to spent a good potion of the time when we were indoors, swaying to rock music for hours. It drove people crazy, even when I wore headphones. The stereo was in the dining area, and there weren’t any radios in the basement where I slept. My family was concerned that listening to music without doing anything productive for most of my waking hours would be harmful for my development. I learned to limit my rock ‘n roll time to a little bit most days and though more whenever I was alone, but not for hours and hours. Though the music and the rhythmic motion were uplifting to me during stressful times, it was fun during happier moments as a celebration of my move and let my happy thoughts flow. Though I was facing the unknown such as of where I would attend school, I felt more joy than stress when I left New York.
When my mother and I were back in New York at the end of the summer, we found out that my father’s transfer had been delayed from September to November. I was disappointed that I wouldn’t be able to start my school in Pennsylvania at the beginning of the new school year. I was also concerned that there would be more delays. I didn’t want to live in New York anymore.
It was less than a week that we were back from Ohio, when Gail called and needed us; mom and I went back to her place right away. Tej had a bladder infection and her urine test came out so badly that she was placed in a hospital for a few days. So my mother and I went back to be with them. Mom went with when Gail visited Tej and I baby sat Lisa while they were away. Though I was sad about what happened, I was glad to be back in Ohio for the time being. Since it would still be months yet until we settled in our new place, we decided that I would stay with Gail for half a year and enroll in school there for a semester.
When my records from the Adams School to the Kent School District came, I began to attend Theodore Roosevelt High School on October 2, 1973. I was very thrilled to finally go to a regular public school. It felt good to be able to take classes with typically developing students. Since I began school a whole month after school started, I was assigned to courses that were continuation of what I had in my other school so I wouldn’t be so far behind if I were to start the new things a month late into the term. The school administration felt that it would be too much for me to catch up if I took new subjects.
I took all of my classes in the morning, so I could be in the work-study program and be available for a job. I liked the idea of getting some experience with the employment that teenagers usually get after school and weekends. I thought it would be nice to earn a little bit of my own spending money, while I would be learning new things. Unfortunately, there weren’t any jobs available for me from firms that sent help-wanted ads to the school. I counted on my school counselor to notify me about such jobs. I didn’t realize that I could increase my chances if I would actively go out seeking for myself rather than relying on others to find opportunities for me.
However, I was able to make a little bit of money here and there by baby-sitting children in our cul-de-sac. Except for a one-week job of taking care of a three-year-old and other older children during the day before I began school–most of my baby-sitting jobs were at night, after the kids went to bed. About one evening a week, I went to watch a four-year-old boy and a two-year-old girl whose mother was friendly with Gail and so got to know and trust me despite my appearances and speech impediment.
The first few times I was there, I turned on their color TV. After watching shows for a few minutes a couple of times, I lost interest and turned on the stereo instead to play records and tapes until I fell asleep on the sofa.
I began to develop more interest in other areas rather than TV such as reading and walking. Since I was free in the afternoons after lunch at school, I had plenty of time to pursue them. During my first month in that high school, I hung out at the school library to read novels for a few hours each day until it was time to take the school bus home. One of my favorite books that I read in that period was, I Never Promised You a Rose Garden, a novel by Hannah Green, about a very intelligent woman who struggled with schizophrenia. Though her problems were different than mine, I felt connected to her in that I was also highly intelligent and that I also dealt with a neurological condition.
One day, it occurred to me that since my school was only about three miles from Gail’s place, I could walk back in the afternoons, especially when the weather was nice. The idea of taking the back roads through the horse stables, farms, and open fields was very pleasant. I also liked getting back earlier. Besides, it felt good to walk.
I was happy to make a few friends in school with whom I had lunch and played cards, though I didn’t considered them to be very close or best friends. I was thrilled that one girl included me when she invited several friends to a party at her place one evening when there was enough snow for tobogganing. This was a big deal for me, since I never had had that many friends who invited me anywhere. The main problem had been that whenever refreshments were served, I would rush over and grab food in as though I were starving. I didn’t realize how I appeared. As we ate during the party, one of the girls was offended and spoke up to me. I tried to tone down my pig-out behavior, but soon forgot to watch myself in other parties to come over the years. But, overall I had a good time.
Though a few girls were friendly, it still wasn’t easy for me to make really good friends. I still had difficulty in sustaining a long conversation. It was still difficult to get intimate with any school mates. I used to be rather shy about knowing exactly what to talk about with others. It was hard for me to go with the flow of discussions. Anything that came to my mind, whether it was related to the topic or not, I would talk about it then. Often the topic would trigger a memory that I would respond to and go off on a tangent. Sometimes I got so anxious to get my words out that I used to interrupt others before they could complete their sentences or train of thoughts. It was as though what I was to say was most important and that everyone needed to hear it right away.
Since I made a few friends to visit and do things with after school, I really appreciated that some of Gail’s friends and neighbors included me in invitations to their places for dinner. I felt like that I was being valued and that they cared for me. This provided me with a boost to my self-esteem that I needed.
One evening, Gail took me with her family to an ice-skating rink to skate. That was the first time that I actually ice-skated though it was my second attempt. During my first which was about eight years earlier, I was so much a coward that I wanted to get out of the rink as soon as I stepped in it with skates on. Years later, I knew that I would have regrets if I never tried. I was elated that I finally was able to ice-skate; though I was still timid and did it slowly and with small steps circled the rink close to the sides so I could hold on in case I fall.
Though it was difficult for me to get started in doing new things, especially of a physical nature, I felt a great sense of accomplishment once I mastered a skill though it might not be fully refined. My physical coordination, related to autism wasn’t as well developed as that of most other people my age. It is common in those with autism to have deficiencies in physical coordination.
In my art class I did very well as usual. My art teacher admired my art often and he was also intrigued of my personality. He joked around. He sat down and had lunch with me a few times even though the faculty was supposed to eat in a separate area away from the students. One of my watercolor paintings of still-life of a rustic chair with several different objects on it, that was done in his class won an award that included a certificate and a dinner out in a restaurant. That provided a temporary boost for my ego, even though I wasn’t able to use my prize since I left for Pennsylvania.
As soon as I completed a semester at Roosevelt High School, I took a Greyhound bus from Akron, Ohio to Baltimore, Maryland to meet my parents. They were away on a business trip. I wanted to spend a little time with my mother doing the day visiting Baltimore while my father was on business. Afterwards, they drove me to our new place in Horsham, Pennsylvania.
We moved into a townhouse development that had natural paneling with a little bit of masonry on the exterior. Our unit had two bedrooms up stairs and a modern eat-in kitchen with a built-in washer and dryer set down stairs. In the back, we had a fenced-in patio looking out into a strip of the woods. The only disadvantage in moving there was that we weren’t able to move in our wall units that Ron had built, since it didn’t fit along the long wall in the living room that had a ceiling beam in the way. But, we gave it away to a cousin of mine on my father’s side of the family.
As soon as we got home from Baltimore, I started Hatboro-Horsham High School at the beginning of the second semester of the school year. I took the continuation of the courses from my other school. I was also able to add additional classes to fulfill requirements for graduation, such as specialized courses in English/communications and history. I took a course in mass media to fulfill my language arts requirement. I took history of industry for my social studies requirement. These courses were a semester long each so it was easy to start taking them in the middle of the school year.
I started to take typing when I attended Adams School thinking that it would be a practical skill to learn since every office has a typist and this would make it easier to get a job. At this school, besides typing all the letters and numbers, etc., my typing teacher allowed me to do fun things, such as producing pictures and patterns all with using type. She had a book for me to follow. I typed a whole page of a sea scene, all with various letters and numbers and spacing.
When I continued taking typing at Roosevelt High, the focus was shifted from doing fun projects to practicing actually typing all sorts of words (both made up and real). The instructor was easy since this was a beginner’s course. But, when I continued with typing at Hatboro-Horsham High, it became much more challenging as we were started to get graded on developing speed with touch typing. I did poorly in this part and it became very difficult for me to keep up with my slow information processing and weak gross motor skills. My movements through the keys tend to be uncoordinated when I work too fast. Whenever I type, my fingers tend to slip and type the wrong keys frequently. This is okay since I have enough time to go back and make the corrections.
In addition to drawing, I took crafts for various projects, such as a burlap wall hanging, ceramic bowls, and a leather purse. I also got to use my artistic ability in my mass media communications class by doing the animation for the class film project. I liked that there were plenty of options in just about all of the subject areas except for the basic required courses. I enjoyed being occupied by my studies all day in school since I was so far behind. This was my best high school and was in a very good school district, the Montgomery County School District that was next to the Bucks County School District which was rated one of the best in the country.
Add comment April 5, 2008
dithorsos
Tags: adolescence transformation school
Turbulence and Emergence
TURBULENCE AND EMERGENCE
Thunder Giving Way to a Rainbow
Out of the blue and seemingly calm breeze,
Clouds start to appear and darken to fill the sky.
Weight and pressure builds up,
Then rain, thunder, and lightening coming down from up high.
Gradually the thunder clouds move away,
Then patches of blue breaks of sunshine reappear.
As the air becomes refreshed and the earth nourished,
A breathtaking rainbow with all the beautiful colors appear.
Adolescence was very difficulty for me during the early stages, which included puberty. This was also a period of a great learning curve. As I become more mature things gradually improved. I greatly appreciate all the love and support that I received from family and friends while I continued to struggle in life.
Before we moved into a larger apartment that had three bedrooms with a panoramic view of Corona and Flushing, New York, I enjoyed looking at the floor plans of it and got excited about the move. I stayed with Grandma Rae during the move so I wouldn’t get in the way. We moved at the end of April 1968 to the large high rise development, Lefrac City, which was in Corona, only a couple of miles from our previous place. Bob was able to have his own room again after many years. Our living room opened out into a terrace where we kept our lounge chairs to use during nice weather. We sold our piano as we didn’t play on it enough. We got brand new furniture for the living room, lamps with tables, chairs, and a couch that opened up in to a full sized bed. In the kitchen, we had modern appliances for the first time.
Unlike many children with autism, I didn’t mind any of the changes in my life and I even welcomed change to add new experiences in my life. I got tired of the same old thing all of the time. Generally, individuals with autism have a much harder time adjusting to changes–though some are better at it than others. The sameness in the environment often provided a source of comfort for such people. Of course all people and environments are constantly changing, at least to some extent. Even some people with autism realize that change is necessary to get ahead.
Throughout our development, there were several playgrounds that were well equipped with swing sets, seesaws, and monkey bars. When ever the weather was nice, I went on the swings for about an hour, until I developed motion sickness later in my teens. I played a little bit with the other children. A girl in the development was in my group in the day camp in Forest Hills. I had had played with her at camp and at Lefrac City. She was very nice and outgoing. There was a candy store in one of the buildings in Lefrac City. Sometimes I used to walk there and buy all sorts of candy. There was also a swimming pool within the complex that required membership of which we never joined.
In May 1968 before I turned eleven, my mother had major surgery to remove her gall bladder. She was in the hospital for seventeen days and was in agony. While she was there, Gail took over the household responsibilities, including all the cooking. Her cooking was very good. She was in a phase of experimenting with fancy recipes such as pea soufflé and other exotic things that I liked. I helped my mother when she came home and brought things to her when she needed them.
During the following three summers, I went to Camp Ramapo Anchorage for two four week sessions. It was a sleep away camp for emotionally disturbed children, located in Rhinebeck, NY, about a hundred miles north of New York City. Just before I went for the first time, I looked at the brochure of the camp over and over again and got excited about going. The camp provided campers transportation to and from camp for each session by chartered buses. I enjoyed the ride up the state for the scenery.
The camp was in a beautiful secluded area by the Catskill Mountains. The first few days that I was there, I pretended that I had gone to grandma’s place because it seemed too good to be true that I was sent to such a nice place. I almost couldn’t believe it and felt that I wasn’t good enough to deserve it, until I got used to the place after a couple of days. Overall, I enjoyed the camp very much. The main intention of the camp was to provide summer respite for the families while providing fun activities for the children with disabilities.
But, after a few weeks into each session, I began thinking about the advantages of home, such as more unstructured time and family. Then, I started to get a little bit homesick. On the other hand, when I was home, it was hard for me to wait to go to camp again. The better-is-else-where syndrome. It was good for me to get away when school was out, especially since both of my parents worked full time. The camp grounds were very nice with a large lake for swimming and rowing, and rustic cabins for each group and each activity.
Each bunk had space for two camp counselors to six campers. We all took turns with the daily chores. A few games were provided for use. Some of the children brought along their comic books to be shared.
During my first summer at that camp, there were only three other children in my cabin with me in July. Then during August, the count was up by one. I began to feel cheated that my cabin had fewer kids than the other groups. I felt that the greater number of children in my group the greater number of friends I would have and be more popular. This seems like that it would make up for my loneliness even though it was mostly caused by autism. Again, I felt helpless and started to pretend my problems away by fantasizing about having additional children in my bunk to add up to a total of six.
I loved the arts and crafts very much. We made all sorts of things–candles of sheets of bee wax, objects from plaster molds, jewelry from beads and bamboo, lanyards, straw dolls, and a few additional projects. I made a lamp from a small tree trunk and a slab of solid pine as a base. I also had sewing and made bags, aprons, and dresses. I got so absorbed in these activities that my mind would be taken away from my day to day problems–almost like taking a vacation. This helped relieve my stress levels.
The swimming areas were surrounded by a dock. Daily, we had a period for swimming with individualized one on one swimming instruction by trained camp counselors. I had a nice tall Danish girl work with me to develop enough courage to swim. For two weeks, she tried to encourage me to let go in the water and just float. Although it was relatively easy for me to move into another place, it was much more difficult to make other changes, such as developing new physical skills as swimming. Out of my intense fear of getting hurt if I do something wrong, It was very difficult to bring myself to embark in new physical activities. One day when I was able to break away from the fear, I finally gained enough courage to float by myself.
I made up my mind that all I had to do was close my eyes, hold my breath, and let go, and that I was going to be fine. When I did this for the first time, I felt that I had made a big step. From there, I learned all the basic strokes and diving. I never cared so much for the latter. I didn’t like getting my eyes under water because when ever I opened my eyes, the water got in my eyes. By the end of the first summer, I swam well enough to pass the basic test for swimming in deep water. I was exhilarated. This was a big accomplishment for me.
It was a lot easier for me to jump into new activities such as boating that didn’t demand as much development in my gross motor skills. Right next to the dock, was a boating area with a boat house where row boats were available for the campers. We usually doubled up in each boat. Sometimes when we took out the boats, we brought along hand held nets and old bread as bait to catch small fish, about three inches long. As soon as we caught them, we threw them back in the water so we could catch them over and over again. I enjoyed getting out on the water with the boat. A few times, we all went out together in a barge that held about eighth to ten people. We then landed it in a wooded area and went for a short hike.
In camp, there was a cabin that housed all sorts of games–including a pinball machine, a pool table, and a ping pong table. I liked playing pinball more than the other games. In addition, there was a gym, where we used roller skates and sat on bouncing bags. We also bounced and jumped on a large trampoline. I enjoyed these activities very much as novelties. It felt good to learn new skills which were helpful in developing coordination. Moreover, we played all sorts of field sports. I didn’t care so much for baseball. I wanted games with more constant activity. In addition, we rode bikes. After being prompted for several minutes by a counselor, I got on a two-wheel bike for the first time in my life. Once I mastered the skill, I felt a great sense of accomplishment and elation.
On several Saturday evenings, we had dances to rock music in a big hall used for camp wide activities. We played all sorts hits on 45’s. As I did mostly repetitious swaying movements as my free style dance all evening, I would enter a trance state of mind daydreaming and being mesmerized by my favorite music. My thought during trances was generally dominated by my obsession of having a greater number of children in my cabin the first year. I also usually daydreamed about my favorite camp activities such as arts and crafts, photography, boating, and swimming. Each hit recording brought forth remembrances from the time period when it first came out that coexisted with my other thoughts.
At the end of each four week sessions, we had a birthday party dance with a live rock band and birthday cake, in the gym, to celebrate everyone’s birthday throughout the year.
Once every summer we took a field trip to the Duchess County Fair. Each camper had a counselor assigned on a one on one basis for the day outing. When we went by the Ferris wheel, it occurred to me that even though that ride went up very high, the riders remained basically upright. So, I went on it and liked it. I was elated to discover something that I enjoyed. I still never went for the rides in which I would be turned upside down, side ways, or other contorted positions. I feared the more adventurous stuff, especially new physical activities and sensations that I wasn’t used to. At the fair, there was also horse back riding. I got on a horse for the first time in my life and I was too much of a coward to enjoy it. I wasn’t used to the motion of the horse. After a few minutes, I got so afraid that I got off. Overall, I enjoyed the outing to the fair with all that hustle and bustle of activities and exhibits.
We went one day on another field trip to The Catskill Game Farm Park that was nestled in the mountains. There were several animals roaming free, deer and various birds. I enjoyed watching these animals in their natural environment.
In addition, we had some other activities, including treasure hunts, photography, bingo, camp out in the woods, and cooking. During photography, each camper was provided with a small camera with black and white film. I wandered all over the camp for my photo opportunities, to get as many people and places on my film as possible. At the end of that activity, we gathered in the dark room to unload our film and get it ready for processing.
Within a few days, we went back to the dark room to follow through with developing our film. I enjoyed photography very much and was talented at it. I also liked learning various procedures, including development of film.
Twice a week, we devoted a period for education. Each camper was assigned to a counselor for one on one individualized instruction. We had this so our academic skills wouldn’t become rusty over the summer. I used that time to brush up on my verbal and reading skills, since I didn’t test as well as I should due to attention problems that were related to autism. Due to my social isolation I was afforded fewer opportunities to pick up the new vocabulary and the nuances of culture which were contained in the meaning of the test passages.
We incorporated some food preparation into few of our activities. For example, one morning each month in camp, we had a leisurely morning with preparing breakfast. We also made homemade ice cream in an old fashioned ice cream maker operated manually. We all took turns turning the crank and filling the outer cavity with ice.
Just a week before my eleventh birthday while I was on a camp field trip I began to menstruate. Luckily, my mother had prepared me and had sent every thing I needed for that. She had a feeling that I was going to start menstruation, since she began hers at the same age. I didn’t feel that I had enough maturity to deal with my periods well. I used to get irritable easily. Since I was already dealing with a great deal of stress that was autism related, I couldn’t take any more on top of that easily. The fear of growing up was very stressful. Menstruation signaled the end of childhood and the start of growing up.
For a little while when I was eleven, I preferred to sit in the front seat in my school van. It seemed to me that seat was the most comfortable. I took turns with two boys sitting in that seat until I got tired of the competition for sitting there. I began to realize that the other seats were just as good. I went back to sitting in the middle of the back of the van. Although whenever I went to gatherings with my folks, I used to go for the middle seat on a sofa as much as possible.
This made me feel that I would be more the center of attention, as if this would make up for my weaknesses. I had this preference for about a year until it didn’t matter to me where I sat as I realized that sitting in the middle wouldn’t make others pay more attention to me. It seemed like that no matter what others paid more to other people than me. I felt that this was related to the situation that my communicative skills wasn’t as sophisticated as most of my peers of my age.
On one autumn day in 1968, my school van broke down for a few hours in the afternoon which seemed like a long time to me. I got very upset and cried while waiting so long for the repair. I hated to get home late. It was difficult for me to deal with disruption of my schedule. It is often very distressing for people with autism to changes or disruptions of plans unexpectingly. Likewise, I used to get disappointed if the parties I was invited to be canceled.
The focus of my obsession shifted from wanting to be the first one off the bus to having half days of school in the mornings and getting home early in the afternoon. I wanted short school days every day so I could get home early and watch all the afternoon cartoons. I was jealous of the little children who went to school a few hours a day and had more free time. I felt resistance to growing up and wanted to remain being a child where I had fewer responsibilities.
Fear of growing up is common in autism. It signifies changes that are more challenging. I feared the increasing demands and responsibilities being placed upon me as I get older. I didn’t have much appreciation for school then. I generally felt younger than my age. There were times when I didn’t want to grow up. I resisted more responsibility as part of growing up. I didn’t feel emotionally mature enough to deal with menstruation which is part of womanhood. It took me about a year to feel adapted to my female development which is part of growing up.
Even though my school wasn’t affected by the teachers’ strike in the New York City public schools that fall all of the schools, including the League School, were asked to remain open for an extra hour a day for making up the time that the schools were closed. I felt cheated out of my free time and felt this was unfair to the League School since it hadn’t stopped at all during the strike. I was really upset until it went back to its regular schedule.
At school, one of the teachers, named Maxine, liked me very much. She knew me from two years earlier when she started out as a substitute. She was caring. She did her job very well. She encouraged creativity with her fictional character, “Marigold,” that she used in story-telling. We all took turns in continuing and finishing the story each week. Marigold was sketched on the chalk board with different colors of chalk as we told the story. Some of the plots which were used illustrated problems that some of the pupils, including myself, were experiencing.
For example, Marigold once dealt with my obsession of getting home early and clocks at 1:30 that showed the time I would like to be home. I thought it was a good idea to demonstrate our challenges in a story format so we could provide better support for one another. I was the most interested when mine was drawn because I was curious of what others had to say about my problems. Generally, the teachers and other children were very interested in my situation and were supportive of me. They thought that I must have hated school so much as to want to leave as early as possible and gave positive reasons to enjoy school–friendships and learning new things. I sensed that the constructive criticism would help me work through my problems. This made me realize how ridiculous my obsession of getting home early was. I learned that I couldn’t avoid growing up.
Several years later, I called Maxine and her Spanish husband, and they took me out a few times. Like my teacher Norma several years earlier, Maxine took a great deal of interest in me which made me feel better about myself and that I was being valued. They took me to a park where we rented bikes for riding around the park. We also stopped in Howard Johnson’s for ice-cream to have after dinner in their apartment. Maxine was pleasantly surprised to hear from me when I called her, and set up a day to take me out to a movie and a restaurant. It made me feel that I was being appreciated whenever my teachers were nice and took me out outside of classes to spend extra time with me.
In school I drew mostly people and flowers, sometimes with landscapes. One of my favorite activities during recess was to create designs with the “Rig-a-Gig” toy that was comprised of flat hexagonal pieces with jagged edges where small tubes adjoined these pieces.
Once in awhile, I was asked to leave the classroom for a time out of about five minutes for acting silly or laughing at inappropriate times. For example, when I thought about funny images such as a cartoon character jumping up high on a trampoline to an open window and climb in, it was difficult to stop laughing–no matter what was going on around me. Sometimes thinking about such things would make me laugh. I used to do this in inappropriate situations, such as in a class room during a lesson when we should be concentrating. It wasn’t easy for me to get rid of such silly thoughts. This was related to my attention deficit disorder. During the time-outs, I went in a trance and play a rock ‘n roll song in my head to calm myself down.
Occasionally, I used to have melancholic crying moods–when I would feel an urge to cry through out the day for no apparent good reason. I just knew that I felt a great need for people to comfort me in a nice soothing voice. But, I didn’t know how to ask for that effectively, since I didn’t always express my emotions well. I used to worry about my problems excessively and take my blessings for granted.
Just before my folks and I were to be driven home by Ralph’s father after visiting the family for the day, Rhonda, who was not yet five then, handed me her Etch ‘in Sketch toy and told me that I could keep it. I thought she really meant it and was about to take it home with me. As I took it into the car, my father yelled and ordered me to return it. I got angry at him and wiped my nose on his arm in revenge. I whined for a few minutes until it was taken from my hand. I didn’t understand how a small child’s brain works and that a child that young only thinks for that moment that she doesn’t want a certain toy. I understood later as this was explained to me.
Most of the time, Bob and I got along with each other very well and played various games with each other. But, we got into sibling rivalry at times, especially over the TV.
In the fall of 1968, Honey started to have problems with her bladder control in addition to problems with her tear glands. When she was taken to the veterinarian, she was found to have a seven-pound cancerous growth in her uterus that was pressing against her bladder–that was causing her to urinate frequently. When she underwent surgery to remove her cancer, she passed away on the operating table.
As much as I loved her and missed her presence, I realized that she was very ill and needed to go get rest and relief from her suffering. I adjusted very well to her death though I was very sad that she wasn’t around for me to pet her. I think my mother and brother had a harder time dealing with this than I. We didn’t get a replacement pet because my folks didn’t want to take on the responsibilities involved, and Bob was planning to go away to college in just a few years anyway.
Several years later in the spring 1971, I was able to experience having a pet again, though it was only temporary and a different animal. In one of the other classes on the same floor as mine, somebody brought in a Guinea pig as a class pet. Whenever the owner wasn’t able to take it home on the weekend, I was offered the opportunity to take it (in its cage) with me. All of the food was provided. It was fine with my folks since I did a very good job of caring for the animal. As with Honey I enjoyed petting it as this help reduce the effects of stress and I was able to commune with the animal which was very calming. Unlike many human beings and like most other pets he was non-judgmental and loved me unconditionally.
Several times each month, usually on a Saturday night, we used eat out at a nice Chinese restaurant that was just blocks away from our place. Chinese cuisine was my favorite. We went to that restaurant more often than other places. Whenever we went there, I loved the food so much that I pigged out until my stomach was about to explode. We always ordered the family plan of all sorts of specialties.
In the spring of 1969, I began to give myself hair cuts–both front and back for a basic short hair style. I decided to cut my hair because I thought it would be quicker and cheaper to do it myself–rather than having it done at a beauty salon. After every few snips in the back, I stroked my hair and used a hand-held mirror to view the back of my head to get as even a cut as possible. I did a good job–considering that it’s much harder to cut one’s own hair than it is to do others and that I never received formal training. My mother was a little bit disappointed that I cut my hair without consulting her. But, she didn’t feel that I did a bad enough job that would behoove disciplinary action. Since my hair is naturally course and wavy with a lot of body, my imperfections weren’t very apparent.
But, even with that, one could definitely tell the difference when my hair was done professionally. I did my own hair for years into my adulthood until I realized that it wasn’t worth it. It was much more important for me to look my best for situations such as interviews, trips, and meeting people.
When all of the children in my school met in the gym for a half hour prior to when classes started in the morning, I mostly paced across the room as I got into a trance. This enabled me to release the build up of tension, so I could be calmer. This was one of my autistic characteristics. I used to also look at all of the children there.
About every evening, I used to do my own style of dance which was mostly swaying back and forth. This enabled me to relieve some of my nervous tension. I surrendered the worries of the world. I used to do this for about two hours at a time to my records in my parents’ bedroom, until I bought a stereo record player that I kept that in my room so I wouldn’t get in my mother’s way when she needed to rest in the evening. I had most of the Beatles albums and a bunch of singles. Rather than playing my albums through their entirety, I just played my favorite selections from each record. I used to play these over and over again, about five times in a row for several days until I got tired of listening to them.
When ever I would be out shopping and pass by where rock music that I liked was being played, I used to go into a trance and do my swaying-back-and-forth dance right out in public which was difficult to control. During my trances, I used become enmeshed in my fantasies. Sometimes, when I was in a store and something caught my eye while I was strolling along, I used to forget to watch for people that were moving along in my path. Sometimes I’d bump into them. When my mother was with me, she often reminded me to move out of the way for others to pass through.
In February 1969 when I was eleven and a half, the van drivers of my school went on strike. I stayed home from school throughout the strike, since neither of my parents was able to take me back and forth, nor did they want me to go alone using public transportation. During my time off, I went to stay in Grandma Rae’s house for about two weeks. I brought along my toys to keep myself occupied. I had the radio on rock music for hours at a time in the spare room, where I spent most of my time. The music wasn’t a problem for Grandma as she was in the living room most of the time which was far enough away from the spare room to not be able to hear the music. I slept in the extra bed in grandma’s bedroom since her husband had already passed away about a year earlier. When I started to get a little home sick, I went home and grandma went with me to spend some more time with me so I wouldn’t be alone during the day. She paid a senior man, who was a neighbor, to drive us from the Bronx to Queens.
Even though I kept myself busy with my toys, projects, and a little bit of TV, I began to get bored by not coming in contact with other children my age. By the second or third week of being out of school, I started to miss it. I missed my classmates and the social interaction I had with all of the people there. I needed the stimulation and the structure that my school provided. Generally, children with autism thrive better in structured environments. By the time the strike was settled after four weeks of the walkout, I appreciated my school so much more than I ever had before.
Related to my superior visual skills, I was very good in doing puzzles. I worked on several 1000-piece jig saw puzzles, with pictures of an English garden with a nice house, Arabian horses, and a painting of a village and farm scene. It used to take me several days, about four hours a day, to complete each puzzle. I also used to play with toys that exercised my hand dexterity, such as pick-up-sticks and Monkey-in-the-Barrel. Also to utilize my fine motor control and artistic pursuits, I did a few embroidery projects, of assorted flowers in a basket on a pillow cover that came as a kit that my mother gave me, and an owl as a wall hanging that my mother had framed.
In April 1969, Gail married her first husband, Ron, whom she met at Camp Rainbow (summer program for emotionally disturbed children), where she was a camp counselor the previous summer and the following year. Ron was a highly intelligent guy who was into wood working and aspired to become an architect. He was very accepting of me with my disability and loved me. He also got along well with the rest of the members of my family. He was brought up locally in Westchester County, NY with a younger brother. Gail and Ron took me out to restaurants and movies.
One morning on July 20, 1969, a day before my twelfth birthday, while I was in my second summer in Camp Ramapo-Anchorage, the entire camp gathered together to watch live coverage of three American astronauts of Apollo 11, the first ever to land and walk on the moon. I was very impressed with this accomplishment. This got me interested in astronomy, although I didn’t pursue it much other than reading an introductory book on the subject and studying it for a few weeks in high school.
Every so often I pondered on questions about the universe, such as where are the limits or is there anything beyond? I used to imagine that there are all sorts of life forms on other planets throughout all the galaxies. Out of that huge unfathomable number, there much be at least a few stars with solar systems which have planets that support life. At summer camp when ever I was outside in a field on a clear night, I used to look up into the heavens and study the constellations and admire the brilliance of all the stars that are many light years away.
When there was a total solar eclipse visible in my area during the early afternoon on March 7, 1970, I got excited and rushed out to view it only for a split second since I was warned that there was still enough brightness to cause blindness. I was amazed that as this was occurring outdoors got just as dark in the middle of the day as it normally was at nighttime.
On one spring day in 1969, I visited a day school for emotionally challenged children, the Summit School that was located in Forest Hills which would have been a lot shorter commute for me. I was assigned to one of their classes for the entire day to get the feel of the school. I recognized a few of the children in that class from Camp Ramapo-Anchorage, which made my eyes light up.
During lunch time, the meal was delivered up to the classroom and served on individual trays, airline style. I preferred serving ourselves and passing the food around the table in the lunchroom like in the League School. Since the school day ended an hour later in the Summit School than mine, I wouldn’t be getting home earlier. So, I didn’t see much advantage in switching over to that school. My mother didn’t think that it was as good as the League School.
Though I didn’t have much problems living with my folks, I wanted to see if some boarding schools would have students that were more typical than the ones in the League School. I wanted to live in a more secluded environment for a change. I hoped that the boarding schools would provide me with increased opportunities to be integrated and mainstreamed in regular classes where most of the other children would have less severe disabilities than my peers at my school. My mother, Gail and I looked into several boarding schools that accepted emotionally disturbed children for me to go as a possible option for a change of pace. The first two, the Green Chimney and the Linden Hill School were located in nice areas in Westchester County, just north of New York City. We visited them in the summer of 1969.
Each house in the residential area of Green Chimney contained a group of about six or eight girls or boys with a set of house parents for supervision. The rooms were very nice in a home-like environment.
About a month later, I became interested again in a boarding school. So, my mother and I visited Linden Hill, which like Green Chimney, had a lovely campus. The residential areas were set up in buildings resembling college dormitories. During our visit to that school, we ran into a few boys I knew from the League School, including Ralph and Stuart, and also a friendly girl with autism from one of my bunks in Camp Ramapo. It made me feel good to see the eyes of these children light up as they expressed excitement in seeing me.
After touring each school, even though my folks and I liked the appearances of them, I got so nervous about making a big change and leaving home for the entire school-year that I performed poorly on the interviews. At the interviews I acted up by wiggling in the chair and asking silly questions about what time the school day ended. I got afraid of making a change into a new situation whenever it came down to making the final decision. I had fears of rules being much more rigid than what I was used to from my rather permissive upbringing.
My family was disappointed in me, especially at Green Chimney which appeared to be the nicest place we looked at. Though my parents didn’t really need to send me away, they had some challenging moments with me throughout my youth such as when I talked excessively about my perseverations.
In addition, my mother and I checked out two schools, referred by Gail’s father-in-law, which were more inappropriate for me. We visited one school in Highland, New York which is in the northern part of the state by the Adirondacks. It took us about five hours to get there by a Greyhound bus on a nice spring day in 1970. The campus was in a nice secluded area in the foothills. The students slept in dome dorms with several others in a group. We were invited and joined the teenagers for dinner.
That school was basically geared for teens that came from troubled homes or were hooked on drugs and needed a place for rehabilitation. We both felt that this wasn’t an appropriate place for me. Luckily, one parent who was visiting her child drove us home since she was going that way.
We visited a boarding school for challenged adolescents located in eastern Pennsylvania. We were driven by Gail’s father-in-law who had connections with the school. There was one girl who had transferred from the League School. That residential school was in a beautiful area away from the cities. But, the students there had much more severe disabilities than I, so we didn’t feel that this would be an appropriate placement for me.
When we received a postcard from friends of my parents who vacationed in Miami, Florida, I began developing a desire to visit and move there so I could enjoy warm, summer-like weather all year round. For several months, I pretended continuously that we had lived there.
Then, when I saw nice pictures of Acapulco, Mexico, I switched from Miami in my fantasy world for the next several months through the winter of 1970 when I was twelve and a half. Since Acapulco is further south than Miami, I assumed that the Acapulco would be warmer. Since I never traveled in my childhood to any tropical area, I was curious about what it is like to be there. I thought that with nicer winter weather there that I might be happier and have less stress.
Since I saw no means of travel available to me, it was much easier for me to pretend that I lived in the tropics rather than face the problems in my own environment. I used to assume that if I moved away, that my challenges related to autism would dissolve. It didn’t occur to me that my problems would follow me where ever I went until I faced them head on and got to the root causes.
When I was twelve, my commute to and from the League School was easier compared to the other years. It took only half as long both ways as it had taken. That was because in that school year, there was only one stop to be made in Brooklyn with the rest being made in Queens, when I was the next one dropped off. It felt better to be home by 2:30 PM instead of 4:00, mostly for watching more of the afternoon cartoons.
At school, I enjoyed it when my teachers shared their hobbies with the pupils. For example, one of my teachers was into photo processing and brought all of her equipment and solutions to school for everybody to use. Luckily there was one storeroom in the building that was dark and was available to be set up as a darkroom. Several of us brought in negatives to produce black and white pictures. I enjoyed learning new things, including making enlargements.
One man who taught in my school brought in bunches of small plastic pieces in all sorts of geometric shapes and colors for every one to use to make jewelry or small sculptures. Special transparent glue was provided to hold the pieces together. I made a pair of earrings and a small sculpture. I loved the brilliant transparent colors of the plastics.
Occasionally throughout my school years, college students who were studying special education came to my school and helped out in classes a few days a week for several months at a time. I enjoyed getting to know them until they moved on in their careers.
From the late sixties through the early seventies as a sign of more maturity, I lost interest in cartoons and got more into family type programs and certain comedy series; the Lucy shows, sitcoms with magic, and series with children; the Brady Bunch and the Partridge Family. I watched the same episodes over and over again until I got tired of viewing shows in which I already knew what was going to happen.
I enjoyed looking at the children that appeared in family shows such as the “Brady Brunch”, because they were so cute and often acted out childhood problems that I was able to relate to, such as rejection, loneliness, jealousy, and low self esteem. I also liked shows that depicted fantasy with magic and witchcraft such as “Bewitched”. Moreover, I related very well to the characters in the comedy series who acted silly, since occasionally I acted bizarre too, such as saying inappropriate things before I thought about what to say and how to say them.
In the autumn of 1969, Gail and Ron moved into a beautiful rustic bungalow, just across the road from the Candlewood Lake in New Milford, Connecticut. They moved in just at the start of the off-peak time of the year when the rates dropped from high summer weekly rates to low monthly rents from fall through spring.
My mother and I used to take a train from Penn Central Station in Manhattan to Danbury, Conn. about once a month to visit them. They picked us up from the station and drove through the New England countryside with brilliant colors of the leaves in the fall and a nice snowy scene in the winter. The air seemed clearer there than in New York City. The stars and constellations appeared much brighter on a clear night. On our first weekend there, which was a nice warm weekend in early October, I swam in the Candlewood Lake before it got too cold.
For several months when Gail and Ron weren’t making much money, they rented out the two loft-style attic bedrooms to two boarders who appeared to be friendly guys. I enjoyed meeting them. On cool winter evenings, we had the fireplace going. I enjoyed very much watching the fire with it’s flowing forms. The fire was a novelty to me, since we had never a fireplace. That looked especially nice in a living room with walls covered with real cedar paneling. One weekend we were there we got about a foot of snow. I felt like it was in winter wonderland. When ever we visited Gail and Ron, I often played certain selections from their rock records over and over again on the stereo in their study.
Since Ron was into carpentry and cabinet making, he set up shop in the large porch area in front of their place. He was very creative in furniture design and made several pieces of furniture, such as various shelves, a teak cocktail table with storage area and a sliding opening on top, desks, dressers, and wall units. He was so devoted to me, that he made me a beautiful miniature walnut dresser as a jewelry box. He spent a lot of time on it since that took almost as long as making a full-sized one. I felt elated that my brother-in-law cared for me so much as to do a lot for me.
In addition, he made my folks a wall unit of various kinds of wood with a series of shelves and cabinets that filled up the entire large wall space in our living room. We used it to store our stereo, tape recorder, records, books, knickknacks and a few plants. My folks rearranged some furniture to make room for it.
In May 1970, Gail and Ron moved to Ravenna, Ohio so he could go to Kent State University for their architecture program and live near some of his friends. On their way from Connecticut to Ohio, they stopped at our place over night until the next afternoon. I had a conflict since there was supposed to be a class field trip to Coney Island Beach that day. I had a hard time deciding whether to go to school for the outing or to stay home with Gail and Ron since I wouldn’t see them until months later. I chose the latter since I realized that there would be other times that I could go to that beach.
Several months earlier, Gail became pregnant and then gave birth to a lovely daughter, Tej, on October 17, 1970 when I was thirteen. Gail got the idea for the original name from friends who named their child, Toj. A few days after Tej’s birth, my grandma, my mother, and I flew by American Airlines from the LaGuardia Airport to Cleveland to spend two weeks with the baby. This was the first time that I was in an airplane. I enjoyed the flight, looking out the window onto the land below that was without cloud cover.
They lived in a charming old rented house with a large kitchen. It was right in town, only blocks away from the stores. When we first arrived, we visited Gail and Tej at the hospital which was a ways from their place. During the days, I had fun taking walks to the stores to browse and shop at Woolworths. Shortly after Gail and Tej came home, we all went to a drive-in movie theater to see Dr. Zhivago. My father and Bob came later to see Tej, but only for a few days. I had no problems in getting time off from school, since I was able to make up the work quickly.
Exactly a week before Tej was born, I got my ears pierced since both my mother and Gail had theirs done and I didn’t want to feel left out. For several years I wore earrings every day until my interest started to wane, and then wore them less and less. When ever I wore them just once in a while, such as once a month, my ears would get irritated after a few hours. On the other hand, when ever I put them on more regularly, such as daily, it was no problem with any type of earrings.
My school acquired several small sewing machines that just did the basic stitches for pupils to use, especially the girls to teach additional skills. Somebody donated a bunch of fabric scraps and all sorts of notions. I helped myself to some of them. I sewed several doll outfits of my own designs. At home with Grandma Rae’s old Singer sewing machine that she gave me, I sewed several outfits for my mother and I to wear. This gave me a great sense of accomplishment.
In addition, I got into knitting and crocheting. The first thing that I knitted was a single-stitch striped scarf with brown and tan yarns when I was ten. Several years later, I knitted short sleeves onto a hot-pink sweater that my mother had started years earlier. I had crocheted much more, because I found it much easier than knitting. This helped calm down my nerves and provided me with solace from my adolescent turbulence and loneliness. I did two things to wear in pink yarns–a double-stitched long vest and a poncho, both with fringes. I continued with several other projects on and off over the years, especially when I would go out or be away from home.
It is common in autism to have phases in something, such as color preferences. For around two years during my early teens, my favorite colors were pink and yellow. Pink stood for the color of many flowers and yellow stood for the color of the sun and warmth. I used to like these colors together. All the people in my drawings wore pink and yellow outfits. Even the furniture in my indoor scenes was these colors. However, several years later, I went almost to the other extreme of picking out mostly neutral tones of browns and grays for my fabrics and art compositions.
In June 1970, I went along with my mother and grandmother to Bob’s high school graduation, which took place in a nice park. At the same time that I was happy for my brother to pass this milestone, I had thoughts if I ever would be able to graduate from high school and go on to college too. I harbored doubts about my future since I was painfully aware that I didn’t fit in with my peers, due to my social ineptitude. I was mature enough to sit for a few hours. As usual, I went into a trance since I couldn’t pay attention to the speeches well. I still enjoyed watching the people and just being out in the park in the beautiful weather we had for the occasion. Just a few years earlier when I was almost ten, I didn’t come along for Gail’s because they didn’t feel that I was able to sit for the whole thing.
Starting the following fall, Bob went to the state university in New Paltz, NY for a few years. He majored in biology with aspirations to get into medical school. The campus was by the Catskills and the Hudson River. There were also several lakes and resorts close by. I then began to dream about going to college some day.
My mother became concerned about me being lonely after school until she and my father came home from work, since Bob was away from home. She hired a friendly woman in her fifties, who was recommended by close friends, to come over to our place to be with me in the afternoons until my father came home. Though she never initiated any activities for me, she was still very nice to me. Sometimes, she brought us homemade sponge cake that she baked. We talked to each other a little bit. She basically let me do my own things.
On one field trip in school when we visited one art gallery in Manhattan, Sally who lived close by invited the whole class to her loft-style apartment for lunch. This was the most fun part of the outing for me, since I did this much less often than just visiting the public places. This trip was similar to one that I went on with my class four years earlier–when we went to visit shops or galleries in Manhattan. My teacher, Norma, who lived in the area, invited us to her apartment for lunch.
When I heard how super wealthy certain famous people were (including industrialists and actors)–I used to wonder what it was like to be so rich that I can have any material comfort or go anywhere to my whim. I began to fantasize about being independently wealthy with billions of dollars to my name. In this day dream, I got this way by becoming super successful in my business in selling my artworks and designs to various places. I named my company, “Rich ‘n Beautiful,” and designed a trademark–consisted of a tulip shape in the middle with compartments, lettered “R” and “B”, protruding out from either side in pink or yellow. I would be able to afford living in a gigantic fifty-room mansion that was so huge that I coined a term which meant larger than mansions, “Beautredge.” I loved this sound which has the same base as “beauty.”
Again, I used fantasy as an escape from my problems of low confidence related to autism. I wondered if having lots of money would make up for it and bring greater happiness and freedom. I had concerns about my future whether I would ever be convincing enough to be hired for a good job that would pay enough to support myself. I thought that if I were independently wealthy I would never need to worry about finding a job when I become an adult since all of my needs would be taken care of without a job. I didn’t have any regards to the non-financial rewards that could come from employment. I felt that money would provide me with security to my future with a great deal of uncertainties.
I got the idea from owning a business from Gail’s in-laws who had a successful chandelier and lighting corporation. They were well-to-do and lived in a lovely home in Largemont, NY, an affluent area north of New York City.
Since I didn’t know any millionaires yet, I had no way of knowing the truth of abundant wealth. Over the years as I read various articles on the experiences of the super wealthy, I learned that they aren’t necessarily better off than the rest of us. A few of them can even be so miserable as to be suicidal. All that money does is enable one to obtain the necessities for survival in a complex civilization. It might make certain things easier, beyond that, it doesn’t do anything valuable other than being used to help the needy. Basically, those who are wealthy are just like anyone else. Money may change the outward appearance, but it can’t alter the inner core of one’s personality.
From contemplating the effects of wealth, I developed some interest in economics. After Bob took a course on introduction to economics in his freshmen year and brought home the textbook, I read the entire book and grasped the basic concepts. In addition, I read a few library books on the subject, including a book on the Great Depression of the thirties. After a while, my interest in economics started to wane.
Just before we moved back to Forest Hills, NY in April 1971, I began to get tired of my collection of dolls. Since we were getting ready for the move by getting rid of our junk and packing up our keepsakes, it was a good time to evaluate my things. I brought most of my toys to my school for others to help themselves to. This included my original Barbie dolls from the early sixties that I probably should have kept for it is considered a collectable and gone up in value. In addition, I saved a few of my newer dolls for Tej who was only about six months old. Tej ruined most of the dolls I had given her by the time she was a year old, since she was much too young to know how to play with such toys. On more of the positive note, this provided me with a learning experience.
One of the main reasons we moved was that my mother missed our old neighborhood and didn’t care for Corona which wasn’t as nice. Moreover, the upkeep in our building in Lefrac City had deteriorated throughout the three years we lived there. We moved into a lovely two-bedroom apartment with a terrace view from my parent’s bedroom.
Even though it had one less bedroom than Lafrac City, it made up the space with a large foyer (about the size of a bedroom) that lead into the living room–where we had Bob’s bed and chest of drawers. Off to the side of the kitchen, was a dining area that was closed off from rest of the unit by the foyer. Our building had a nice lobby with a part time doorman. This was on a relatively quiet residential street that was only less than a mile from the most affluent neighborhood of the city, Old Forest Hills, where there were a lot of impressive mansions and estates.
Occasionally when the weather was nice, we walked over there. During our walks, I discovered a record store that sold old albums and singles. I was excited that I had finally found a place which had several old single hits from the sixties available. I had looked in other stores that sold records, but they didn’t have the 45’s I was looking for, since they sold only the most current ones within the top sixty. I also found a store that sold old singles at clearance reduced prices where I bought some. Music was very important for me in reducing my nervous tension from the autism.
In June of 1971, when we hosted a family reunion with the Chasan family, about forty people came from all over the country. Gail, Ron, and Tej came so we were able to show off the baby. I had a very nice time getting together with relatives that I hadn’t seen in years and doing business with them.
One cousin who came from Illinois admired one stuffed animal I had made with colorful fabric into a horse-like creature. She had two small daughters and asked me to make stuffed horses for them. She paid me for the project and I was very thrilled that someone hired me to do what I enjoyed very much. I was excited about making some money even though it was small.
Over a year later, I sold another craft project to relatives, a needle-point pillow of birds and flowers on a black background with black trimming to Uncle Jack and Naomi. This project was given to me as a kit with nice cotton yarn. Again, I was enthused to make some more money here and there, especially by getting paid more for a bigger project. I felt that I was being valued and shown capable by making some money. This boosted my self esteem temporarily.
Even though I liked Camp Ramapo-Anchorage, I wanted to go some place else for a change. I asked my mother to check out other camps. She contacted Samual Field Y, where I had attended day camp several years earlier. They had just started a sleep-a-way camp program that was located in Brewster, New York, about fifty miles north of New York City. During the summer of 1971, I went to there for eight weeks straight. This camp was more geared towards teenagers with challenges, much smaller and somewhat less structured than Camp Ramapo-Anchorage. The area was also nice and secluded. There was a lake for swimming. We were on our own during swimming, although there was help when needed and life guards.
Like my other camp, there were five other girls and two counselors in my bunk. Most of these girls had just mild or borderline disabilities–from autism, epilepsy, learning disabilities, and emotional disturbances. They were all nice to me. For example, one girl always shared candy and wrote to me after camp. Another girl, Ronnie had been in my bunk a few times in my other camp. It was fun being with her again.
On the weekdays, a few hours in the morning were set aside for vocational training. Some campers had part-time jobs with various businesses in Brewster for their training. Others, including myself, remained in camp. I was placed in a group of about six other girls who did hand sewing as our vocation. One of the two counselors, who watched our group, seemed to have followed me from the other camp. I also had her in one of my bunks the previous year in Camp Ramapo-Anchorage. It was nice having her again. Since there were no sewing machines our projects took a long time. But it was still fun and relaxing. I made two purses–red corduroy with lining; and black cotton velvet with embroidery out of my own designs.
Every week, each camper got an allowance from three to five dollars, depending on whether one worked in or out. Those that worked out in town got the higher amount. Even though I enjoyed what I was doing, I was a little bit jealous and wanted the higher allowance. I realized that there weren’t enough jobs in town to go around for everyone. I felt it was a good idea for the camp to hand out some money to spend on field trips or when in town. In addition, it provided more opportunities for campers with disabilities to develop skills in money management and the thrill of getting paid for their work, though the allowance was much less than the minimum wage.
Every Monday evening my bunk went to town to do our own laundry in a laundro-mat. We were provided with enough change to operate the machines. While our clothes were being washed, we went to the few stores nearby. It was just as well that we did it ourselves, as we could have more opportunity to develop a greater sense of responsibility. Besides, I enjoyed the ride back and forth on the country roads.
In addition, we went on field trips every week. Sometimes, we went with the entire camp, and other times we went in our separate groups. We went to all sorts of places–such as parks for picnics and Camp-outs, museums, movies, bowling, and the county fair in Rye, New York. The camp also provided standard activities–such as swimming, arts and crafts, evening dances, and cook-outs. During the last evening of camp just before we all went home, we had a special banquet dinner.
Within a few months after camp, a very friendly girl from my bunk invited a few of us from the bunk, including myself to her apartment on a Saturday afternoon for a mini camp reunion. I walked there since she lived very close, about a mile away. Even though I was excited about going, I got a little nervous upon arrival. Since, I still lacked confidence in myself, I harbored a tiny bit of doubt about whether the invitation was for real. I also was worried about being too early. Before I knocked on her door, I stood there for about ten minutes to work out my concerns. Once she let me in, all of my worries flew away and I had a great time.
Ronnie was in my bunks at both of my summer camps. She was very friendly. We became friends and saw each other after camp. She lived only a few blocks down on the same street as I. Despite my challenges, my life was much more normal making friends and doing various things on my own.
A few times in the autumn of 1971when I was fourteen, Ronnie and I went to a Saturday program at the Samual Field Y in Little Nyck, N. Y. for teenagers with disabilities. Our parents thought it would provide more social opportunities. We went together by bus. The meetings were loosely structured to provide opportunities in socializing with each other. The turn out was low, about five of us at the first meeting when we introduced ourselves. One session we had Halloween parties with a lot of candy everyone to enjoy. There was plenty left for each person to take home. The other meetings were canceled due to lack of interest. This was just as well since I wasn’t thrilled to go regularly anyway. I still kept contact with Ronnie and visited her a few times, including when she had her birthday party.
My mother contacted two young, female, social workers, who ran a program called, Explore, which organized Saturday outings for adolescents with challenges. They were contacts of Gail’s father-in-law. They discontinued the program, but they offered to work with me two evenings a week. These women were interested in working with me on improving my appearance. My folks knew that this would benefit me. My posture and gait were poor and crude. I went by bus to where this was held at the apartment of one of the women, who was Indian, in Manhattan. Small refreshments were served, which was the most fun part of the evening.
One evening, when I was on my way there, I got so upset about going so often that I cried even on the bus–though, I didn’t do it very often. I felt that my afternoon rest time that I needed was being impinged upon. After I attended several sessions, I stopped going with my parent’s approval. My energy levels weren’t high enough to go out in the evenings after full days in school with a long commute. I was often tired when I came home from school. It was too bad that I wasn’t able to continue–I could have used more training on my outward appearance. Without follow-through, my gains in my appearance went by the wayside for many years, since I didn’t practice enough. I slipped right back into my old habits without thinking about them.
Aside from poor posture, I had some more things to work on in my life–such as an eating disorder and a need for more socialization. Shortly following puberty when I was twelve years old, I began to become preoccupied with food and started to overeat with excessive snacks. Besides having breakfast and a big lunch at school, I used to eat almost as much in my snack as I would in a whole meal when I came home from school. I began to cook to make things easier for my mother since she was working full time and sometimes she worked late and didn’t come home until after nine.
By January of 1970 when I was twelve and a half, I had gained at least twenty pounds during the previous six months. This became noticeable to my family. They started to urge me to watch my weight. I began to appear a little plump at 145 pounds with a height of 5′7″ and a broad frame. I had been slim throughout my entire childhood, when I ate only when I was hungry, rather than to reduce stress. I began to become concern about my weight and feel bad about myself.
I felt so ugly about my added body fat, that I became very anxious to lose weight as fast as possible and developed anorexia nervosa. I gave up almost all carbohydrates since diet books out that time restricted them the most in their weight loss plans. I ate an equivalent to about a cup of low-calorie food a day, which included my proteins and vegetables. This was also when I switched from drinking whole milk to skimmed milk. One good thing was that I started to exercise more–calisthenics with jumping and more walks outside. I memorized the calorie charts of various foodstuffs and applied to everything I ate daily.
After several months on this regime, I lost over thirty pounds and got down to 112 pounds, which was way to little for my height and build. All of my bones started to stick out. I felt poorly of myself that my self image became greatly distorted and I wasn’t able to see how thin I was. I became so skinny that people thought that I looked like a concentration camp victim of World War II. I also started to get very weak and wasn’t able to keep up with the physical activities at camp.
The camp officers got very concerned about me and called my mother to talk to me. She explained to me that I could die if I lost too much weight. This made a lot of sense to me, since I was getting weaker and I began to realize then that I was too skinny. So, I gave up a semi-starvation diet and went back to my old eating habits and into bingeing. I felt so lucky to be alive, that I overcame anorexia nervosa in time, before I starved to death like some other girls afflicted with the disorder.
Actually the whole time I was starving myself, I felt hunger all the time and food was always on my mind. I just let my strong determination to get slim fast override everything else. The distorted image of me was reflected from my low self-esteem. It was also an issue of control–since I lost control over things in my life, at least I could control my weight. It took me several months to gain back my weight.
When I was home after camp where I had unlimited access to food, my over-eating was as bad as ever. Since I fixated too much on food, I binged on all the snack foods that were around. It was difficult to restrain myself from the temptations. For instance, whenever my father walked through the door with bakery goods, I rushed over to grab the bag from his arms and immediately ate the products.
Whenever I went to parties with my parents where buffets were served, I really was bad in controlling my eating. I ate constantly almost all evening long until I was so stuffed that I was about to burst. It was as though my stomach was a bottomless pit. Even though, I continually felt miserable with stomach aches and slight nausea and gas after a party, I couldn’t make myself stop eating when I should have. I was addicted to food as it was soothing for my frazzled nerves. Since carbohydrates generally stimulate the pleasure receptors in the brain, they produced feelings of calm and euphoria. For this reason, eating disorders are common in autism, since there is generally greater need for relaxation and elevation of moods.
Even in school when there were parties, I tended to take more than my share of the refreshments. Sally, my teacher, was very good of trying to get me to control the amounts of the party foods I ate. She wanted me to learn to be more considerate of others by leaving more food for others. I resented her having that much control over me, though she was fulfilling her responsibility as a teacher to correct my wrong-doing. Even with coaching, it still remained very difficult for me to control my eating and I wasn’t able to gain enough control.
One of the times I fought with her about it, my class was being filmed for a TV show. I was in it, showing off my anger. I didn’t care if many people were watching me. I was shown eating cake and ice-cream with milk displaying poor table manners such as lip smacking and slouching. I was shown arguing which wasn’t my usual self. It was too bad that I was in my worst behavior while being filmed.
As I got more into a cooking and baking phase I tried out various recipes from cookbooks, magazines, and cards for more complicated dishes such as soufflés, tuna-cheese role-ups, fritters, and fancy desserts.
When friends of my parents, Bella and Irv, moved very close to us, only blocks away, we visited each other often. They had two daughters–the first one, three years older than I, and her second one, five years younger than I. I joined them for everything, since I didn’t have many friends to hang out with. Besides, I enjoyed going out with my parents and mingling with their friends. We went on walks and ate out together regularly.
Bella had parties often, in which I was always invited along with my folks and other friends. For example, she had a birthday party on November 1971 for Irv and my father for both their forty-seventh birthdays. Bella and Irv were always very nice to me. They accepted and loved me and gave me gifts for the holidays. Whenever I walked to Alexanders or the fabric store close by after school, I stopped by their place which was on the way. Bella was usually home and invited me in and served me milk and cookies.
One of the things that I had difficulty in dealing with was not being able to go to any party that my parents were invited to. I enjoyed parties very much, especially where there was food. Whenever I couldn’t go when my folks did, I felt left out regardless of the reason. I felt like that I wasn’t wanted. It made me feel good to be included in things, since I didn’t have much of a social life of my own. My friends, who were mostly from school, invited me just once in a while to their places. I wanted my folks to take me everywhere they went. Whenever they didn’t, especially to parties, I demanded that they would. I would get angry and wouldn’t take no for the answer as though this was my right to be included every time.
There was one instance when my mother was talking to a friend, who had obesity, about my problems with loneliness that responded and invited me to her apartment to be with their daughter, who was also very heavy and only a year older than me. I had a very nice time becoming acquainted with the girl. That made my evening. She didn’t seem to mind having me over, while her parents were at a party with mine. She also enjoyed meeting other teenagers close to her age. I really appreciated the thoughtfulness of the family to invite me so I wouldn’t be as lonely. Since they lived in the same development as where the party was, they brought us food from there.
As I entered adolescence it had become more difficult to make friends, since my autism and a short attention span made it harder to keep up with the maturing of my peers with their increasingly complex socialization. When children mature to become teenagers, their interactions with peers become more socially complex with less reliance on props or toys. In addition, teenagers tend to form their friendships in cliques from their contacts in school which made them less available for meeting me in the neighborhood.
There was another time in which I was invited along with my family, but couldn’t go. For example, one time when Bella and Irv had a holiday party and invited my whole family, I was sick with a bad cold. But at least my grandmother stayed home with me to keep me company while my folks went. I was really disappointed that I had to be sick then. Why not any other time when I wasn’t invited anywhere?
One day when, Claire, a mutual good friend of Bella and my mother, took me out to pick out a gift, my self-centered nature took hold of me. Claire, like Bella, was very nice to me. She often included me along with my folks to her parties. She owned a cosmetics store that was close to our first place in Forest Hills. She wanted me to pick out something from her store. I had difficulty in making a choice, since I wasn’t into make-up, unlike most other teenage girls.
I went around the entire store several times for at least a half hour–long time for me to make up my mind. After a few minutes, Claire brought out a product that she had a special on, a fancy lighted make-up mirror. I almost went for that, since this was on sale and I wasn’t all that interested in anything else in the store–even though I probably would never use it.
Afterwards, I thought about the first album by The Partridge Family that I really wanted more than anything else. I requested that record from her instead of her merchandise. She gave in to me and went to the record store for it as my gift. It was too bad that I didn’t think of choosing things that I would use from her store other than make-up–shampoos, soaps, lotions, and colognes. It would have been much easier for her.
Aside from my self-centeredness, another part of me shined through occasionally, when I was helpful to others. For example, after my mother hired a woman to clean our apartment every other week, I began to help out more with the household chores–vacuuming, dusting, and cleaning the bathroom and floors. From working full-time plus raising a family, my mother wasn’t able to handle the chores too. I didn’t like the idea of her paying someone to clean, so that was when I decided to do more so the cleaning lady doesn’t need to come as often. I had a lot of time on my hands anyway. I didn’t mind doing the chores too much.
One day I overheard my mother talk to a friend, whom she met decades earlier during the fifties before I was born, and who invited my mother to her place in an affluent section near the Forest Hills High School. When my mother went, I noticed she left the address on her dresser where I could see it. I got the idea of walking over. I told my father, who stayed home, that I was just going on a walk. I didn’t tell him my entire plan so I wouldn’t give him more of a chance to say “no”. When I arrived there, my mother was a bit surprised and a little bit taken aback that I went to that friend’s house when they didn’t know each other that well.
The friend was very understanding and nice to me. She welcomed me and introduced me to her teenage daughter who was very close to my age. She served me her home-made banana-nut bread. She also gave me a beautiful cotton poncho that had several bright colors on a black background that was made in Mexico. I was elated that I was given a gift, especially since that was the first time she met me. She took us on a tour of her lovely home, which I enjoyed very much. It turned out to be a fun evening for everyone after all.
When I was fourteen, I began to be placed in more advanced classes in mathematics and language arts. I was learning basic algebra, which I good in it and enjoyed very much. I was thrilled to be able to go beyond arithmetic. In language arts, we started to read more books and do reports and have class discussions on them. I began to develop an interest to read novels such as Little Women by Louse Alcott and “The New York Times” on my own time, though I still didn’t read as much as I should have.
Once during autumn, Bob drove both my parents and I to Ohio to see Gail and her family for a long weekend, which was about 500 miles away. My father helped with the driving when Bob needed to rest. My mother didn’t have her driver’s license yet since she never needed to drive in the city.
Bob had bought himself, a brand new compact sports car. The front was roomy with the two seats. Though the back was very cramped with small seats, we still managed okay for the eight-hour ride each way. Even being seated in the back for the entire time both ways, I had a lot of fun looking out the window as I was in a trance–all along Interstate 80, through New Jersey and Pennsylvania, and eastern Ohio. I let my mind got lost into the scenery. Sometimes, I rocked my head.
My mother and I flew to see Gail and her family for a weekend in fall of 1971 for Tej’s first birthday and to see their new house in Kent, Ohio. We went to Ohio once by Greyhound Bus to Akron, Ohio to reduce cost while visiting them. They picked us up at the bus depot to take us to. I enjoyed the trip, but, it was too tiring to my mother–especially since we took the all-night run and she wasn’t able to sleep in an upright position. Since then my mother flew alone for the subsequent weekend visits and I only went during the summer when I had extended time off from school.
On June 12, 1972 when I was almost fifteen, Gail had her second daughter, whom she named, Lisa. Ron chose a much more common name that time, since they couldn’t come up with any other unusual names that they liked and Gail chose Tej for their first child. Right after school, only two weeks later, I went to see the baby. I decided that I wasn’t going to summer camps anymore and instead help Gail with her little ones. As soon as I came home from my last day in school, Bob drove my father and me to there. The men stayed for only a few days, but I remained for about seven weeks.
This was a valuable experience to be with the family, so I could learn the responsibilities of raising small children, and Gail needed me. Before my nieces came along, I didn’t realize that it was a lot of work involved in their care. I had previously thought about getting married and having two children (preferably girls) someday.
But, after that summer when I had gained some experience of caring for small children, I reconsidered and didn’t want to become a mother–though I heard that Tej and Lisa were relatively easy to take care. I wasn’t a very good aunt since I didn’t pay as much attention to the girls as I should had. I did my best when they were infants when waving toys and caressing them were more sufficient. This was so much easier than to engage into more social activities when they became more mature. Due to my central auditory processing deficit (CAPD), it was much harder to understand small children with their higher pitch and sometimes softer voices. This lowered my confidence in relating to them.
I lacked confidence in entertaining them. But, when Gail and Ron went out and left me with the girls, I exerted great effort in baby-sitting them. I read and play simple games with them. I knew better then to ignore them when I was in charge. I was good about helping with the basic things–household and kitchen chores, and my nieces’ basic hygiene needs and feeding.
While I was with Gail for only for the summer, she pointed out things for me to work on myself that my parents overlooked. For example, she alerted me to become more with it and respond quicker to other people when they needed me to move out of their way or to provide immediate assistance as needed. She talked to me about the need to snap out of my trances when my attention was needed. This resulted from my spaciness and attention deficit disorder. It was difficult to be continuously aware of others around me. My trances occupied my mind so much that I wasn’t aware of the people around me.
In addition, I had a tendency to behave inappropriately in new situations where I didn’t have much experience. For example, when I went with Gail and the girls to drop by her friends while they were having lunch and dinner. When part of their meals, cauliflower and tacos, were offered, I rushed over to get the food. Gail taught me that it wasn’t polite to take any food that was offered by people when one stopped by unexpectingly at mealtime. It was difficult for me to understand, and then it sunk in after a little while so I was able to grasp it.
Just shortly after my lesson, I visited some neighbors just across the street from Gail’s. Just before I had lunch with them, I called Gail to make sure that it was okay to eat in their house. She said, “yes”, because I was invited which made sense to me. The family, who had me over, had six children–the oldest was a girl only a year younger than me and had mild mental retardation. Hearing about my challenges, they were interested in becoming acquainted with me.
Even though I enjoyed very much meeting the girl with a disability and she was very friendly I didn’t get together to do things with her. It wasn’t easy to make the initiative of seeing each other. Our interests were different and we didn’t find a common ground. This was made more challenging by our intellect levels being so different. Despite her lower intellectual capacity she was probably more social than I. I didn’t have confidence of relating to her in addition to not relating well to most other teenage girls close to my age.
Her mother introduced Gail and me to brewer’s yeast, for it high protein and B vitamin content. She mixed it with orange juice every morning and serves it to her whole family. She claimed that it gave them more energy. It didn’t taste so great–even in juice, but, I was still able to drink it down. I wanted to try it with hope that it would improve my health for a greater vitality. I didn’t notice any change from taking it so I discontinued.
During the second week in August, Gail and Ron felt a great urgency to drive me home so they could see Grandma Rae and for her to see Lisa for the first time. Her health was deteriorating. We had a very nice family gathering and we all went to the Bronx Zoo and rented a wheelchair for Grandma Rae so she could come along. We all had Italian ices afterwards. It was a good thing that I was driven home from Ohio when I was. That was the only time our grandmother got to meet the baby, at just two months old.
Grandma Rae’s arthritis had gotten progressively worse over the years–it flared up so bad here and there during her final few years, that she had a great deal of difficulty in getting out of bed. She had taken all sorts of drugs to control the pain, which all lost their effectiveness. Moreover, she had problems with her stomach and heart with high blood pressure. She was in and out of the hospital several times during the past year.
One day when my parents and I was just coming back to our building after a short walk to get ice-cream, my mother’s cousins; Gitty, Adelle, and Sy were in front of our place waiting for us to get back. They needed to wait until we were all up in our apartment to talk about the news to the family. They knew that this would be a very hard blow to my family especially my mother.
They had just come from visiting Grandma Rae at the hospital and watched her die. She passed away on August 27, 1972 in her mid-seventies when I was fifteen. She was the last of my grandparents to go. This was only after two weeks that Gail, Ron and the girls were around to see her. It was as though that she was hanging on just a little bit longer, so she can get to see her second great-grandchild. We saw her at the hospital two days earlier and her mind was still good and alert to the very end. As much as I loved her and was sad for her, I knew that it was necessary for her to go to rest peacefully–she badly needed relief from the misery of illness and pain.
Gail and her family came back for her funeral and to haul back her furniture back to Ohio. My mother and I went back with them to their place to help with loading and unloading. Ron rented a small U-haul truck to be able to take the furniture. As we were unloading the truck in Ohio, it just hit me that Grandma Rae wouldn’t be around for my adulthood and I broke out in tears and cried. Up to that point, I handled her death very well–I had remained calm and didn’t get overly emotional. It took awhile for my grief to sink in after the funeral, the excitement of having relatives come, and being on the road. My father didn’t feel any emotion at all and wasn’t able to understand the feelings of people around him–one of the characteristics of autism. It was as though he was impervious to the sorrows of death. This was very hard on my mother as she cried and cried for days and continued to cry when triggering thoughts come up occasionally for a long time thereafter.
Besides his apparent lack of emotion my father had difficulty in caring for others by knowing the right things to do. For example, when my mother was in the hospital for a few days to get stitches in her knee, he only visited her once. This angered her. He didn’t take any time off of work to be with her. He didn’t understand what was expected of him in that situation. Fortunately my mother’s supervisor from work stayed with her all of the first day at the hospital. One morning when she was on her way to work, she tripped over a hose with a bottle of soda pop in her hand. Her knee got badly cut with broken glass in the injury.
After my mother was admitted into the hospital, Bella and Irv invited my father and me to dinner the first evening. Though I greatly appreciated their thoughtfulness of us and hospitality I felt very sad for my mother. I knew that she was in pain and would be laid up for a while in a cast. I had great empathy for my loved ones. Sometimes I didn’t express it as well as I should have.
One Saturday, my father and I walked about five miles to the hospital to her, to make more of an outing and to save on transit fare. This was a big walk for me. I was thrilled by this accomplishment, even though my legs were a little tired for not being used to it. Bella drove us home, since she arrived while we were still there.
A few hours later in the evening, we walked about a half a mile to a movie theater to see a double feature. When it was over, I used the rest room without informing him. I should have mentioned to him that I would be back a few minutes. He didn’t know where I was and thought that I had left without him. He went home without me. I waited for him for a while until I realized that he left already. I walked home alone.
On my way home on a dark side street late at night, a young guy approached me as he exposed his genitals and touched my breasts. I got scared and ran into a apartment building there. I thought that he might rape me. I screamed and knocked on several doors until a friendly older woman let me in to call the police. The police came to file a report. I went on home and everything was okay. Since then, I never walked alone on a dark street so late at night.
For a while, the League School had put pressure on my folks to let me go to school by myself on the subway, since everyone else in my classes were going by public transportation. Though my parents were reluctant to let me go alone through the low-income neighborhood, Bedford-Stuyvesant, Brooklyn, they did come to a compromise of my going alone one way instead of both. I still got picked up in the morning by the school’s van, but in the afternoon I came home by mass transit. It was okay since I understood that it was a way to reduce cost by cutting back on van service.
One thing that we did in school to help modify our behavior, was to jot down a mark every time we did an undesirable habit or for desirable actions to be increased. I chose the latter to improve my social skills. I was aware that I wasn’t as social as many of the other teenagers that I knew. I wanted to become more outgoing. I had difficulty in initiating conversations and in participating in discussions. I lacked spontaneity. Any progress that I made was very slow. But, I made slight gains in the frequency of initiation conversations since I charted my progress for a few months. After keeping the chart my motivation fluctuated up and down in sustaining my social gains. It was a great deal of strain to keep on trying to socialize. But, I kept on improving over the years.
For a while, the League School had put pressure on my folks to let me go to school by myself on the subway, since everyone else in my classes were going by public transportation. Though my parents were reluctant to let me go alone through the low-income neighborhood, Bedford-Stuyvesant, Brooklyn, they did come to a compromise of my going alone one way instead of both. I still got picked up in the morning by the school’s van, but in the afternoon I came home by mass transit. It was okay since I understood that it was a way to reduce cost by cutting back on van service.
One thing that we did in school to help modify our behavior, was to jot down a mark every time we did an undesirable habit or for desirable actions to be increased. I chose the latter to improve my social skills. I was aware that I wasn’t as social as many of the other teenagers that I knew. I wanted to become more outgoing. I had difficulty in initiating conversations and in participating in discussions. I lacked spontaneity. Any progress that I made was very slow. But, I made slight gains in the frequency of initiation conversations since I charted my progress for a few months. After keeping the chart my motivation fluctuated up and down in sustaining my social gains. It was a great deal of strain to keep on trying to socialize. But, I kept on improving over the years.
For several months following my grandmother’s death, I was at a low web in my life. The loss of a valuable family support had sunk in. Being already high-school age and still going to the same school for over ten years, I needed a change. I was depressed and wondered what it would be like to commit suicide. But, I never would have killed myself as I always had too much hope, even during my lowest periods. The League School made arraignments with the Kings County Hospital that was close by, to see a psychiatrist twice a week at the hospital. They felt that this would benefit me by talking out my problems to someone.
My psychiatrist wasn’t able to help. I talked about my feelings of needing a change of school and about my problems in keeping up with my peers socially. I didn’t get into the issues that concerned me the most, low self esteem, and what I could do to improve my appearance and mannerisms. I had difficulty in expressing my fears of ever fitting in the society and what my future would be like for me. I came out of my low when I found out that I was accepted to attend the Adams School right after the New Year, but on the condition that I continue therapy. I only saw the psychiatrist for a few months. It was too tiring for me, since it involved a lot of travel–from my new school in Manhattan to Brooklyn, and then home to Queens. They all understood and let me discontinue.
My adolescence began with a series of turbulence which was marked by increased difficulty in controlling emotions and fear of growing up. This caused regression in my mannerisms and socialization only to progress again later and emerge into a highly capable human being. I became increasingly concerned about the outlook of my future and adulthood. I was worried that if I wouldn’t fit in with society than I would never make it on my own. As I adjusted to my hormone levels of womanhood, I became more concerned about improving my social skills. I became interested in making friends which had led to steady gains in my development.
“Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the anger of my foes, with your right hand you save me.”—Psalm 138:7
Add comment March 22, 2008
dithorsos
Tags: adolescence transformation emergence
Breakthrough in Learning and Communication
BREAKTHROUGH IN LEARNING AND COMMUNICATIONInner Light
Within the depths of one’s being,
Is one’s potential waiting for the opportunity to be expressed,
Made available for the seeing.
One needs to open one’s eyes to look within oneself,
And to seek and create opportunities that chime,
For brighter light within oneself to shine,
And for that within others to be brought out,
Just as well so not to be left out.
Though acquisition of language made my communication much easier and enabled me to have a more normal childhood, I still faced many challenges in not being fully included in my community and the resulting low self-esteem. With my speech impediment and being behind in my social skills, I dealt with low confidence.
I started going to the League School for exceptional children in September 1962 when I was five. This school founded only ten years earlier in 1952 was the first of its kind in the United States to provide day educational programs to children with emotional disturbances or autism. I went to the afternoon kindergarten class. The school provided transportation by vans, to school in the mornings and from school in the afternoons. Since, they did not provide service in mid day, my mother brought me to school for my afternoon program. The van brought me home. It took about an hour, since there were several stops along the way and we lived around twenty miles from the school. Mom went out to meet me when I got dropped off to take me up stairs.
The classes in my school were very small, with about five to eight pupils to two teachers in each class. In my class, there were five children including me, two other girls and two boys. This was an exceptionally high girl to boy ratio for the school. Within the student body of about seventy pupils, there were around three boys to one girl. This is about the same ratio for autism. The school was housed in an old building that was once a very large house. The living and bed rooms were converted into classrooms. The basement was used as kitchen, lunchroom, and extra space for dancing and storage. The attic was used as offices and two additional classrooms. Some of the rooms had fireplaces that we never used. Each room had an old fashioned heater.
In my class, we played all sorts of games, academic and physical, that enhanced learning. We were introduced to the alphabet and numbers. I learned basic arithmetic concepts, such as adding, subtracting and simple fracturing. I started to learn to read with the Lotto flash card game. This was very important to me, since this lead to my major breakthrough. Each card had a diagram and the written word below. As we laid down each card to the matching picture on the board, we pronounced the word over and over again until I understood the word being spoken without the other cues. This enabled me to make visual associations with the spoken word of various objects. New pathways opened in my brain. After a while, I started to understand the connecting words, verbs, adverbs, and pronouns along with basic nouns. Whenever I heard a word or a sentence that I was familiar with, visual images formed in my mind. This enabled me to learn since I did not need to rely on sound without visual associations. I began to talk as I learned to pronounce words.
Although I was not able to distinguish certain consonants, such as “L,R,Y and W.” I pronounced all these as “W,” since these sounded the same to me. I also did not pick up the “N” sound. Moreover, I had difficulty hearing some other consonants, such as “B, D, and P.” Since these sounds, unlike the vowels that are drowning out, are sharp and rapid my brain was unable to process them quickly enough to discern them. But, I learned how to pronounce these letters by watching the positions of the lip and tongue for each sound.
I started speech therapy when I was six. My mother took me to a speech pathologist at a hospital for a couple of sessions. But, it didn’t help much. Then about a year later, my school brought in a speech therapist to work on my pronunciation of various letters. She showed me how to pronounce the consonants that I had missed all those years, including the “R, L, Y,” and “N.” Even though I had mastered each letter, I still had a noticeable speech impediment with severe stammering and stuttering. I also had difficulty getting certain words out at times.
Since, I was just learning to communicate, I was still years behind in my development in language and social skills. This adversely affected my self esteem for many years to come. I became aware that I could not socialize nearly as well as most children my age, especially those in our neighborhood. With this low image of me from being so far behind, it was very difficult for me to catch up and develop self-confidence. Even with all of my problems, deep down inside of me, I still had a glimmer of hope that I was going to improve my skills and lead a normal life.
Shortly after I learned to read, I had one book, in which blank spots on the illustrations for peel-out objects or creatures to be applied. I was very good in this, with my superior visual and fine motor skills. This helped take my mind off my struggles. Though my interpersonal skills were low, my visual and artistic skills were sky high. I was very observant of things around me. I displayed excellent visual and spatial concepts of which I felt was at an even match or even higher than the best computer programs in graphics. I fabricated complex patterns of puzzles to match each picture on a section of standardized tests.
I used the principle of linear perspective in my drawings. I had good, fine motor control with my hands. My drawings were very accurate and detailed for those performed by my age group. I colored very neatly within the lines with crayons. Occasionally, I used oil pastels for drawing. I drew all sorts of things, such as, flowers, trees, animals, people, and houses. At school, we applied paints to large sheets of paper. We used tempura paint most of the time. Sometimes, we did finger painting. I loved all art activities which was exhilarating and took my mind off my troubling thoughts.
While I was learning to write the letters in the alphabet and all the numbers, I drew on the walls in our apartment and practiced my letters and numerals with crayons in various colors. I also scratched and drew on a few of Gail’s older records. But, my parents were able to get the stuff off the walls with lots of scrubbing and cleaning formula. I learned not to do it anymore.
Moreover, I played with all sorts of toys that enhanced my creativity–building toys and clays. I played with Tinker Toys, Lego-style bricks, and a set with large square interlocking pieces. I molded all sorts of things in oil-based modeling clay, Play Doh, and Silly Putty. I had the Etch ‘N Sketch toy in which I drew pictures by turning knobs for vertical and horizontal directions respectively. I was highly skilled and developed excellent manual control with it.
I had a few toys that were traditionally owned by boys for a change of pace from the traditionally girl toys, such as a battery operated car with a track set, several small metal cars with wheels that roll, and a G.I. Joe doll. Watching the battery run toys and rolling cars along was had a meditative effect.
As to reflect my generally peaceful temperament, the toys associated with war never went to war. For example, I arranged Bob’s set of army men in various configurations that danced and marched together in peaceful ways. My G.I. Joe married Barbie and led a peaceful existence.
As I was becoming more verbal, I was able to do more social things with my siblings and other children. I played card games with Bob, such as “Wild Duce” and “Gin Rummy.” We also played board games like checkers, and several popular games with rolling dice and drawing cards. We also had games that involved rolling marbles in various contraptions which involved speed or knocking down things. These games, besides providing me with stimulation, kept my mind occupied as to keep it away from any troubling thoughts. This also taught me how to play and interact with others.
I became very interested in dolls which were great instruments in developing social skills. I started to collect Barbie dolls, including relatives and Ken, and various other dolls with different attributes. I enjoyed getting several outfits for them and dressing them. I loved to manipulate them with bending, walking, and kissing. I had a nice red wooden doll closet. I hung up a few of Barbie’s dresses that I had hangers for. For example, I had a “Heidi” doll, that came in a red carrying case with a window and closet space, which raised her right arm with the press of her button. My mind had become so focused and lost into my dolls that it was though that nothing else existed or mattered. Playing with dolls was very meditative.
As I began talking more, I started to make a few friends on our block. My favorite activity with them was playing dolls. One girl, Sondra, was a year older than I and lived just down stairs on the first floor in our building. She, on her initiative, used to come over to our place to play dolls with me. She was able to see through my struggles and see the beauty in me.
I also made friends with two Chinese sisters who were younger than I and lived in a ground level unit in another building. When we met in the playground, they would invite me over to play dolls when they could. They and their family moved away shortly after we got to know each other. I used to go play a little bit in the playground with other kids. It was difficult for me to take any initiatives with my friends, so I used to wait for them to come or invite me.
There was one family, the Lisbonas, who lived in our building and had a daughter and a son who became friends with Gail, Bob, and I. They came over to our place quite often. Sometimes Bob and I went to their place. I used to call the girl, “Bona,” because I missed hearing that her name was also “Debbie” and missed the first sound of her last name. Sometimes, I had a tendency to misunderstand names and just pick up on the most prominent sounds.
In my class there was a boy my age with a one tract mind for music. Ralph was highly talented in music, and played the flute and piano. He had perfect pitch and he had an amazing ability to hear any classical music and play it on his instruments. He would do this for hours and hours. I found him to be a nice boy. At parent’s meetings in my school, my folks made good friends with Ralph’s parents, Danny and Esther. We visited each other with our families often. They lived in Brooklyn. So it was a long way to go see them by subway, over an hour each way, but, it was well worth it.
Sometimes when we went to their house on a Sunday, my family would leave me there to let me stay over. The next morning, I would get on the school bus with Ralph to go to school. I enjoyed this very much. Danny was also mildly disabled by deafness in one ear. In spite of that, he was very playful with all of us kids. This family used to bring me gifts when they first visited us and for my birthdays. They were like family to us. My parents also made friends with another couple who also had a non-verbal giggly child in my class.
I had some obnoxious habits that I did not understand were wrong until people pointed it out to me. These included yelling for getting attention from others, sucking my thumb all the time, and picking my nose and then wiping my finger on my clothes. I hated the gooey texture of snot so I wanted to get rid of it as soon as possible. Moreover, whenever, I had a runny nose, I used to blow my nose on my dress or shirt. By the end of the day when I had a bad cold, my skirt or shirt would be sopping wet with snot. I also hate the feel of my nose dripping, so I wanted to get rid of it as soon as possible without getting a tissue. I did not understand how important appearances are to others. When I was about nine years old, I learned that wiping one’s nose on clothes and that picking one’s nose are disgusting habits. So I stopped doing them. I learned from comments of several people on such behaviors and from my mother criticizing my father on his nose picking habit.
Unlike many children with autism, I never played with bodily secretions such as saliva and mucus. I never liked the feel of these. But, I formed bubbles with saliva in my mouth for a short time until someone asked me to stop and explained that this is a repulsive habit.
With my love for music and the calming effects, I began to play records myself when I was five. We had an old Westing House record player with speed settings for 33.5, 45, and 78s records. We set it on top of our upright piano. I climbed up on the piano bench to reach this record player to play Gail’s 45s. I played some of the hits I recall from the early 60’s when we still lived in the Bronx, including “Run Away Sue” by Dion, “She Cried” by Jay and the Americans, and addition records since our move to Queens. Occasionally, I played each of my favorite songs especially when new over and over again, about five times in a row. I did this until I got tired of the same hit all the time.
I began to play the radio when I developed an interest from listening to it in the school van. We had an old radio with a single speaker that was the size of a shoe box. We also had some small portable transistor radios which had poor quality sound. My mother played the radio a lot with classical music on most of the time and occasionally on easy listening background instrumentals that used to be popular. I was mostly interested in rock ‘n roll and children’s folk music. I also liked some of the theater music records my mother played, such as “West Side Story.” My mother bought me a few long playing children’s sing-along records by several artists.
For years I had the radio on for the top one hundred hits of that year. I used to listen to these for hours for a couple of days until my ears hurt from all that noise. It was a big deal for me to hear the greatest hits. I listened to the radio or records when my father wasn’t around since he never cared for rock music.
When ever I listened to a familiar song that I loved, I would play that song over and over again all day long in my mind. I would feel almost that I had a dancing rhythm in my head. This set the tone for my day, and helped boost my mood a little. I always had difficulty in remembering a song that wasn’t familiar shortly after I heard it. After I heard it a couple of times, then I remembered how it went.
During my second year in the League School I learned a lot of spelling and became very good at it. Every morning, we took turns writing down the day of the week and the date on the blackboard. I practiced good penmanship on line paper. I had pride in myself. One day in the classroom, the two other girls and I created an elaborate snake like design with all of the blocks of the set all over the floor. After we finished this project, one of our teachers did a sketch of it on paper in coloring pencils and framed it.
Everyday when the weather was nice, we went out to play in the school yard that had a dog house and monkey bars. The school provided several tricycles and red wagons. I rode the larger tricycle until I out grew it. We had fun pulling each other in wagons. We sometime played outdoor games, such as tag, relay races, and “May I take a step.” I remember that there were nice tall trees surrounding the yard fence.
About a couple of times each month, my whole school used to walk several blocks to a small museum to use their auditorium. There we watched various children’s classic and educational films. The films, especially the interesting ones, took my mind off my worries while I was learning various subjects including morals to selected stories. This museum had a few artifacts on counting devices. It was housed in a charming old building. Sometimes following the movie, we stayed and played in the play field where we flew kites.
I took in more of the world than others realized. For example, during the major political events of the early sixties–Cuban missile crises in October 1962, and the assassination of President John F. Kennedy in November 1963 when I was five and six, I remember my mother being glued to the television set for days about the respective situations. I felt the nervous tension in the air, even though I didn’t understand the full impact. I watched the funeral with my mother and grandmother. I liked the marching bands.
In spring of 1964, the Danny and Esther adopted a baby girl, Rhonda, who was very cute. I adored the baby with her straight blond hair and blue eyes. Shortly after Rhonda was with her adoptive family, she was discovered by a modeling agency. She got signed for modeling contracts to appear in magazines and television ads. Whenever the family came over to our place with little Rhonda, our dog, Honey, would get afraid and keep away from Rhonda. Honey remembered how I, as a small child, mistreated her. She had made a generalization that all toddlers are bad to dogs.
After being around with Rhonda and admiring her cuteness, I began to wonder what it was like to have a baby sister and desired one. I had a big old doll baby, whom I named Amy. When I was seven, I used to pretend for months that she was my baby sister. It stayed in my mind all the time. I wasn’t able to get it out of my thoughts until other obsessions came in.
Often on a weekend morning, I went to Bob’s bed and watched Honey pounce on the bed and play with him. Bob used to stick his fist from under his quilt cover, then Honey bit it playfully. I would also pet her.
Occasionally, Gail took me along to visit few of her best friends from school. One of these friends, Eleanor, used to come over to our place quite often. She accepted me very well the way I was and was nice to me. Her parents became friends with my parents. They were also very nice to me and had me in their apartment, when my folks went out.
Sometimes, my mother and I went walking to department stores close by to browse and shop. Afterwards, we would eat out for lunch, usually at a fast food place such as the “White Castle” for our favorite hamburgers. Each burger was small, square, and flat with several holes with grilled diced onions. I didn’t care so much for cheese with it, since it wasn’t in the Jewish custom of not combining dairy with meat.
Occasionally, we went shopping in Manhattan and than had lunch in a nice delicatessen. I generally ordered things that were more gourmet when I got more mature as I liked to venture out and try new things. Getting out of the house and walking around helped taking my mind off my problems, besides the release of tension from the physical activity.
Throughout the summers of 1964 and 1965 when I was seven and eight, we went to the New York World Fair that ran for two seasons. It was very close to us, about a mile away, so we always walked there and back. I enjoyed going through all of the exhibits, even though; I couldn’t understand the technological advancements some of these were promoting. We went to an elaborate fire works display and a dazzling dance show that I enjoyed very much. I enjoyed also viewing the pictures and crafts from various countries around the world. I hardly remember anything from other exhibits, since I was so young and I hadn’t yet been taught about different cultures and was unable to relate to the showings. But I did enjoy very much the festivities. I didn’t mind the crowds as partaking in the festivities took my mind off any troubling thoughts. My mind was absorbed by the fair.
Our biggest family vacation during my childhood was when we went to Washington, D.C. in July 1964. Grandma Rae came with us. We traveled by Greyhound bus. I enjoyed the ride, looking out the window of the scenery of farms, cows, and horses. But, I got a little bit anxious before arrival, since I wasn’t used to that long a trip. We stayed in a two room suite with a kitchenette in a fancy hotel, with a sweeping view of the city. We went sightseeing to the major tourist attractions, such as the White House, Washington Monument, and memorials of Thomas Jefferson and Abraham Lincoln. We also went in paddle boats on the Potomic.
On my seventh birthday which was during the vacation, we had chocolate cake with candles. For my birthday gift, I received a lollipop game, in which we aimed to get the balls in the stick inside each lollipop. Gail and I played this together. We took pictures of our trip with our regular and movie cameras. We all enjoyed the trip.
Even though this was the first time that I was ever away from home more than a weekend I didn’t get homesick since I still had my family, except our dog. I was very thrilled to go on the trip with my family for a change of pace. The exhilaration of exploring new areas and sightseeing took my mind off home as well as my problems from my disability. I knew that we would be back home less than a week and that Honey would be okay. But, the down side was, that we put Honey in a kennel, which made her miserable.
The following month, I went to a day camp for four weeks for the first time. It had a nice park setting. I liked doing all sorts of activities, with arts and crafts being my favorite. We made boxes out of Popsicle sticks and ashtrays from mosaic tile. I used to wade in the pool, since I lacked enough courage to learn to swim for several years yet to come. I was taken to a certain location to be picked up by a van to the camp each morning.
That school year, there were only one other female pupil in my class. Whenever she was absent, I felt displaced being with the remaining four pupils who were all boys. It was uncomfortable to be the only one in anything even for things that I had no control over such as gender.
Every month in this class, we made a calendar of the month on a large sheet of paper. We drew a big mural on top to depict the season. On the bottom, we allowed enough space in each date to take turns filling in the weather pattern. At the end of each month, we had a drawing to give away that month’s calendar. Once, I won and I was very thrilled to get to take it home.
In school, the “Weekly Reader” was distributed to each pupil for social studies. I enjoyed its articles on geography, history, and current events. I liked the “Dick and Jane” series for the repetitions and clarity of the basic verbs and adverbs. This made it easier to learn to read.
Every day in school, we used to rest for five minutes on mats that we rolled out. Afterwards we often did slow, dance like movements to act out the transformation of a seed in to a flower to stretch our bodies before we get back to our chairs. In addition, we played several games that were more physical–Musical Chairs, Bluebird, Hokey-Poky, and Ring-Around-the-Rosy. I enjoyed the singing and the rhythmic movements, which were soothing for me.
It helped me release some of my nervous tension that resulted from my inferiority complex. I placed high standards upon myself to develop excellent social skills. I felt that this was highly valued by society. I sensed that most other children outside of my school were much more sophisticated than I. I felt that no matter how much I tried, I never measured up. I was concerned if I would ever make friends as easily as my siblings, for example. This low image of me was emotionally draining. I didn’t feel like that I was valued as much as others, despite my other attributes. It was as though I was chained to one area and didn’t know how to break free. This resulted from limitations that I imposed upon myself.
I had different food preferences and dislike as most other children. For example, when we had snacks of juice and cookies, I drank some juice even though I didn’t like it much. I tried drinking soda pop several times, but I never developed a liking for it–unlike most other folks. I also didn’t care for fresh fruit, because of its tartness, except ripe bananas. I liked all the meals served in school, including all the vegetables. I loved mashed potatoes. As I approached adolescence, I started to like canned apricots and peaches. I was a chocoholic–I loved chocolate everything much more than anything else. I had a strong preference for all of my desserts to be chocolate all the way through and through, along with chocolate milk.
When I came home from school at around four o’clock in the afternoon, I used to watch children’s variety shows and cartoons on our black and white television for an hour or two. This was enough TV viewing for me each day. The Flintstones and Bugs Bunny were a few of my favorites. Whenever I was home from school, I used to watch Captain Kangaroo in the mornings. Since, I had about an hour commute to school, I had to leave my place at around seven thirty in the morning, just before the show went on. I didn’t have any problems in comprehending the content. I related to all of the characters with their naiveté. Sometime, they would act more ridiculous than me–doing funny things to capture and fight with others. Whenever Grandma Rae was around, I watched several game shows with her. I never got into the soap operas with my mother. Fortunately, noise from the TV never bothered me.
A strong motivation worked wonders on my will power to discard old habits. I began to feel that thumb sucking was too immature for my age and that it was socially unacceptable. I noticed that neither of my siblings was sucking their thumbs, and I wanted to be more grown up like them. I felt that people would respect me more if I gave up immature habits. During the new year of 1965 when I was seven and a half, I made a determination to stop sucking my thumb by January 23rd. I knew that it was going to take some time to break a habit that I had for so many years. By that date, I never sucked my thumb again. My family was very impressed and proud of me. They thought that this was amazing for a seven and half year old girl who had special challenges to exhibit such good will power. It wasn’t easy at the beginning. But, it took only a few days to lose any desire to suck.
One winter afternoon when I came home from school, I noticed that my skin was broken out every where. I learned that I had the chicken pox and stayed home all week from school. I used Calamine lotion to control itching. My mother bought me a set of magnetic alphabet and numbers with a board to keep me occupied while recuperating.
My parents made friends with a couple, whose son, Mark, was in my class. They lived very close to us, less than a mile a way. Occasionally we walked to their apartment. Mark was very withdrawn and had difficulty communicating to others. He had a speech impediment. He also rocked back and forth, like me.
They baby-sat for me several times. One time when I was with them, I played with a cute inflatable yellow and green stand-up punching bag that Mark ordered through Canada Dry by sending in proof-of-purchase tabs of their “Wink” drink. I wanted one too, so I had my family buy enough “Wink” for the promotional deal, even though I didn’t like the beverage. I was somewhat influenced by advertisement in shaping desires though not always.
For about eight weeks during the summer of 1965 when I was eight, I went to a special day camp program for challenged children at Samuel Field Y in east Queens. There were around fifteen other children in my group with two camp counselors. There was door-to-door transportation service by van. One adolescent girl, with mild mental retardation, who also was in the program, lived only a block a way from us and came over in the mornings to catch the van with me. She seemed to radiate an innocence which was beautiful and that I admired. From then on I developed a greater sensitivity towards all those with a similar disability.
We had birthday parties for the summer birthdays including mine of which my mother sent a bunch of chocolate cupcakes from the bakery with me to share with my group. They all sang to me which made me happy that I was receiving attention.
On my block, I made friends with two girls who were a few years younger than I, Mary Ellen and her best friend Maria who was Hispanic. They were always together. They invited me to their birthday parties, where I enjoyed the people and the excitement. We mostly played dolls together.
Sometimes when we went on walks, I got all sorts of candy–mostly in the candy store which had comic books, and a counter that served malted drinks and sandwiches, as well as sweets. When I was around eight years old, I began walking about a half mile each way to the candy and toy stores including Woolworths then back by myself. I was very thrilled to have the independence to go on my own which made me feel more mature.
On one August day, we went on a family outing on a big boat going up north on the Hudson River to Bear Mountain on an Island. It had a very nice park where we had a picnic. The trip took about three hours each way. I enjoyed the trip very much.
Each summer, we made a couple of trips to Manhattan for outdoor activities such as strolling through the Central Park and visiting the major museums near by. In addition, we use to go to Greenwich Village for outdoor art shows continuing for blocks and blocks and browsing all sorts of wares that people sold on tables that went on and on. There were a lot of jewelry and things to wear. There were also lots of paintings, including acrylic on black or dark velvet that I liked. Just about on every street corner in Manhattan, there were carts selling hot-dogs, big soft pretzels, and ice-cream and pop. I had the pretzels every time.
One teacher, Norma, who I had for two years, took me out a few times to Manhattan. We went to the Empire State building, and then we went all the way up to the hundredth floor and looked down on every thing below. I enjoyed seeing people as ants. At another time, we went to the F.A.O. Schwarz toy store that specialized in the most expensive toys, including the most elegant decorative dolls and stuffed animals. Norma bought me a few souvenirs from these outings, plus a nice filigree design bracelet. She left my school. I felt sad that she moved on. I became attached to her and missed her. She also took me to Jones Beach in Long Island, a few years later with another teacher.
As with my caring teachers, I always was happy whenever someone spent time with me and gave me things as this made me feel valued. For example, one afternoon when I had just come home from school and I fell and scraped my knee, a woman came up to me and took me to her apartment to put a Band Aid on my knee. In addition, she happened to have a nice collection of doll clothes that she gave me. These outfits were very nice, some were hand knit suits. I was elated that someone who hardly knew me could be so generous. The gifts made me feel loved and accepted.
In school there was one boy, Stuart, in my class and van who was attracted to me. He was like my first boyfriend. He sat next to me as much as possible. We liked each other very much. We made each other cards for birthdays and holidays, including Valentines Day. He was very intelligent. He, like me, talked too fast and loudly. However unlike me, he talked on and on with excessive details on technical matters. This made it more difficult for me to listen. He was always analyzing something. He took a part of radios and put them back together again. He was fascinated in how everything worked. He probably was on his way of growing up to be a good scientist or engineer.
In school, a dance teacher taught us dance twice a week. Moreover for a few months, she gave me private ballet lessons a half hour a week in school. She felt that I would benefit from this which I did. I learned the basic five positions.
At the end of the school year, she gave me a book. This was a touching story about a little girl who had legs so weak that she couldn’t go out to play with other children. Then, she started to take ballet lessons to build strength in her legs on the recommendations of her doctor. With lots of persistence and practice, she eventually became a good dancer with strong legs. Even though her problem was different from mine, I related very well to her. She touched my heart with her struggle to overcome it. We both had our respective hardships to deal with and had to work with them to make improvements in our lives. This inspired me that with faith and determination, anything is possible. Perhaps it was possible for me to develop good social skills as an example.
For show and tell in school, I brought all sorts of toys to show–Silly Putty, Sixth Finger with projectiles, a top with wire projector, Gumby, and several new dolls. I wasn’t very skilled in presenting things to my class. My speech still lacked fluency and I often mentioned things out of order because I would forget to include something in its appropriate spot and remember later when I was already onto other areas. My stuttering resulted from talking too fast and from a lack of self confidence. It was my low self image with my speech impediment that led to my self-fulfilling prophecy. Moreover, I had a great deal of difficulty in modulating my voice. I had a tendency to talk way too loud, especially when I got excited. I couldn’t hear myself very well. I enjoyed watching the presentations by my classmates and seeing what they brought.
Generally, despite having had made friends with my peers, I felt more comfortable expressing myself to adults than to other children my age. I assumed that adults were generally more patient and understanding of my deficiencies, since I still lacked confidence in my communicative skills. They were less likely to ridicule me than other children.
Several children on my block used to make fun of me and wouldn’t get any where near me. One day when I was in a bad mood and probably was coming down with something, I got mad and hit one boy about my size. Illnesses generally made me vary irritable. I usually was generally easy going when with other children.
It wasn’t only my differences that stood out due to autism that other children teased me about. As a double whammy, I had some physical characteristics that stood out just as well such as a cyst in my nose that made it look funny. I felt bad enough that I was given hard times about my disability. I felt worse that I was made fun of my nose especially since nothing could have been done until years later. The teasing made me feel ugly despite my family members telling me that I was beautiful.
Right on my second birthday, my nasal cyst that I was born with became infected. Boils formed on my nose. Hot wet compresses were put on it. It was very painful. Lots of pus came out and left pin holes. It all cleared up in a matter of days. The cyst was very benign and made my nose look funny. It made it look rather squarish almost like a cube. I had to wait until all of my bones stopped growing completely in my teens in order to remove the cyst, since it involved restructuring my nasal bones.
My mother began going for her Master’s degree in library science at the Pratt Institute in Brooklyn. One morning, she got on the school van with me to see how much quicker she could get to school, since both of our respective schools were in the same borough. The driver was very nice to her. It seemed so strange to me to have my mother join me for part of my ride to school. It was overwhelming to me. I used to feel uncomfortable if my mother appeared out of context. For me, she wasn’t supposed to be on my van–though intellectually, I realized that her commute might have been made easier by going with me part way. As it turned out, her commute wasn’t any shorter or easier than going by herself all of the way.
When ever a thought came in to my mind that made me feel uncomfortable, I used to squint my eyes and make contorted facial movements. My mother always asked me “what is the matter?” This behavior helped me release some of the tension until I came up with other methods. Though I was aware of this it was difficult to stop as with nervous habits in general. It was frustrating whenever negative thoughts came and stayed in my mind and I can’t get rid of them. I felt as though my mind had control over me, rather myself controlling it. I used to feel that most people didn’t like me as much as other children because I was ugly and inferior.
Every year on Halloween, I used to dress up and join several kids going trick or treating. We would go through all the floors of most of the buildings on our block. By the end of the evening, the big shopping bag with handles that I took with me would be filled up. I loved the idea of all of our neighbors giving me things. I received all sorts of things and homemade goodies. In those days there was no concern of tainted food.
Just after Halloween 1965, I came down with a bad cold with fever for days. While I was home sick from school, my mother wanted to pick up something for me to help lift up my spirits. I requested the Glamorous Missy doll that came in white hair with special water soluble markers in several colors for coloring its hair. I appreciated very much all my mother did for me. This took some of the sting out of the sickness.
During the early evening of November 9, 1965, we had a major black out that affected all of New York City. This was the first time in my life that I ever experienced a power failure. It was due to a malfunction of the operating system rather from a major storm. Luckily, we had enough flashlights and candles on hand for light. Even though I got a bit anxious for the return of electricity, I took the situation in my stride. I liked watching the flames and glow of the candles. I tried to remain calm as there wasn’t anything I could do about but to make the best of the situation. I was grateful for one thing, that I didn’t get stuck in the dark elevator while the power went out and have to wait until it came back. Our electricity came back on the next morning. At school, we all recounted our experiences with the black out.
Often when I went on a class field trip to the zoo or to a major park with concession stands, I bought Cracker Jacks caramel popcorn with peanuts and got a token prize in each box. I enjoyed these trips very much. It gave us a chance to get out of the classroom and explore places. Occasionally we went to an amusement park. I learned to like the bouncing horses on the carousel. I went on the “spider” ride a few times. I was afraid that people might vomit on me on rides like that. I got the idea from hearing of people getting motion sickness from rides. I didn’t realize that they are much more likely to throw up after them then during them. Otherwise, I enjoyed the rides except those that turn me upside down, drop me down super fast, or went up very high.
During spring, several parents organized and took turns leading Saturday trips for the children for a few months. This provided more opportunities for parent involvement, and breaks for other parents from their children–besides fun activities for the kids. My mother led one of the outings. I enjoyed all these trips to various places–several zoological and botanical parks, and ferry rides to the Statue of Liberty and to Staten Island. We also went to the Coney Island beach. I liked getting to know other parents, mostly the grandmother of a girl, Fanny, who was to be in my class the following fall. The grandmother led most of the trips. When ever there were bees out, I used to just stay still like a statue and not move an inch. Even though I wasn’t stung yet by bees, I was afraid that they would be antagonized by any of my movements and sting me.
During the summers of 1966 and 1967 when I was nine and ten, I went to a regular day camp at a Jewish school, close to us in Forest Hills. My parents felt that since I got along well in the classroom and with typical children in my neighborhood that a summer program with regular children would work out fine for me. Transportation to and from camp was provided by school bus. Boys and girls were in separate groups. Each group had around fifteen to twenty kids to two camp counselors. There were all sorts of activities–arts and crafts, swimming in the pool with group lessons, drama, and weekly cook outs at the Valley Stream Park just outside of Queens in Long Island.
I got along well with most of the kids, except for a few of the girls who used to tease me a lot. I liked the idea of being with typically developing children, even with some teasing going on. I adjusted to that. I learned to ignore others who make fun of me. I felt like there were enough girls who did like me to still feel accepted at the camp. There was one girl, a little bit older than me, who liked me and sat next to me on bus rides to cook-outs and field trips.
During swimming lessons at the pool, kick boards were handed out and I took one. It took me about several weeks to feel comfortable using it with both my feet off the bottom. Once I mastered it, I enjoyed kicking with the board in my hands. But, I still wasn’t able to get myself to float in the water without it.
One of the most popular projects in camp was making lanyards out of flattened cord that has been coated in a variety of colors. I tried to figure out how to weave them by myself, but gave up after a while and had someone show me. I liked the challenge of figuring out such procedures. On my lanyards, I attached my apartment key, a rabbit foot, and a steel whistle. With the same cord, we also sewed precut pieces of leather together to make purses. We learned to weave baskets as one of the activities. I enjoyed all of the craft activities as utilizing my strengths in artistic talent made me feel good about myself.
When Bob turned thirteen, we had a bar mitzvah for him, which included a Jewish ceremony at a synagogue and then a reception at a hall. In the Jewish faith, this celebration is for a boy entering manhood at the age of thirteen years. After the Bar mitzvah service at the synagogue, we went to a professional photographer to have our pictures taken separately in black and white in addition to the few pictures we took ourselves. At the reception I had my hair set in rollers by Gail and I wore a fancy hot pink velvet dress with white trim. We invited all of our friends and relatives, including children. This added up to about a hundred people.
Bob also got a big present which was a reel-to-reel tape recorder in a nice solid wood deck. This machine was quite bulky with each reel being about six inches in diameter. He had fun with it recording rock hits from the radio and speeches from each of the family members. I listened when those were being played back. I talked and sang in to it. I didn’t like the way my voice sounded.
We started to get together with friends of my parents from years earlier, Eddy and Teddy. They had two daughters close to my age–Thea who was three years older and Neala nine months younger. I played mostly with Neala. She took to me very well and we played dolls together. A couple of times, we slept over at each others apartments.
Once each summer for several years, Eddy and his family drove us to mutual friends. They had a son, Benjamin, close to Bob’s age and a daughter, Rebecca, ten months younger than I, in Long Island for a picnic. Neala, Rebecca, and I played well together. They had a tiny cement swimming pool in the backyard. The water was cool since it was unheated. I used to get in very slowly until I got used to the water. Sometimes other friends would come with their three sons, so there was a big crowd with lots of children.
On my block, a large family with five children moved into a building close to ours. I made friends with two of the younger children, a girl, Carol, who was several years younger than I, and her brother, Danny, who was a year younger. Danny once came with us to the Far Rockaway Beach. Carol came over to play dolls often. Both of them invited me to their birthday parties. She introduced me to a friend who was even younger than she. We played at this friend’s apartment several times until that girl turned against me–she apparently didn’t understand my differences when it was more obvious.
For my ninth birthday, I decided that I wanted to reciprocate and invited a few friends who included me in their parties, about eight children who came. A few of the gifts I received were a hundred-piece puzzle, a few dolls including the “Crissy” doll with pull out hair to make it long or short, and a special doll outfit with changeable color in response to acidic and basic solutions until the color faded in to neutral position.
Gail took me a few times with her when she was baby-sitting two sisters who were two and four years younger than I respectively and wanted to meet me. We played dolls and other games, including Twister. We became friends for a little while and I visited them a few times on my own. They lived in a very nice apartment just a few blocks away.
Before I turned nine, my mother and my school looked in to the possibility of me going to PS 175 which was just blocks away from us, where my neighborhood friends went. They felt that since I had good classroom behavior and that my socialization was improving that maybe it would work out.
The school rejected the idea out of concern that the teachers and the pupils wouldn’t know how to deal with my differences and special needs. They feared that the other children would tease me, and that I wouldn’t get enough attention since the classes were very large, about thirty-five pupils in each class. It was explained to me in words, “they do not take kids with problems like yours” or to that effect. These words stayed with me for many more years to come. This adversely affected my self esteem along with dealing with deficits in a world that does not value difference as much as it should.
I felt hurt that I wasn’t accepted for the neighborhood school. I wanted to eliminate the long commute to and from school. I had desired to be able to walk to and from school with my neighborhood friends. I felt that I was somewhat inferior to them to be the reason behind not attending the same school as them. I hated the idea of having to go to the different school as my brother and sister as that made me feel that I was being cast out as being different. I wanted to be just like them by be provided the same opportunities in attending the same schools and making more friends from the neighborhood. It was the idea of attending school for the emotionally disturbed that made me emotionally disturbed more than anything else.
By age eight, I felt that I was led to believe that there was something wrong with me and that it would be better if I would get fixed. I had the idea that the better one pretends to be normal, the more respect one would get. By then, I have heard so many references to so called “normal” children doing this or that and I knew that I was not being referred to. Of course I had no idea of being “normal” means, especially since I am not neurotypical.
I felt helpless in this situation in that I couldn’t change the minds of those in charge of the educational system to change for me. I coped by pretending that I went to the neighborhood school with my friends. It was easier to run away from my problems than to face them head on and work them through, since I felt that it would be too painful to face the situation. I was still aware of reality. I used to talk about the fantasy only to myself.
It felt good to start off the school year with familiar children in my class as this was very comforting. For example, Ralph and a few of the other boys were in my class again after a few years of separation. In addition, I enjoyed having Faith in my class. We got to know each other from the Saturday field trips and became friends. I was thrilled that she had the same birthday as I, except that she was a year older. I found coincidences like this amusing. Both Faith and I had an attention deficit disorder. We played dolls together. Her parents had disappeared, so her grandmother took custody of her. Once, my mother and I visited them in Brooklyn. I enjoyed visiting my friends in their homes and seeing where they lived.
It was very difficult for me to pay attention for a long period of time. My mind wandered off very easily. I used to daydream almost all the time. Whenever I would get over stimulated from unusual days, events, or any changes, I couldn’t pay any attention to lectures. I moved around in my chair often. But fortunately, I didn’t have the hyperactivity which is often associated with attention deficit disorder. So I didn’t take any medication like many of the pupils in my school did to control their hyper kinetics. I also had difficulty concentrating on reading when I was very excited about something. Sometimes when I read I had a tendency to process the information wrong either by missing words or misinterpreting messages.
For several years, my mother took me about once a year to the Jacobi Hospital for follow up and testing of intelligence. My performance profiles varied from mild mental retardation all the way through genius levels. I scored my highest in areas of memory, visual analysis, mathematical concepts, and creativity. I scored genius levels on special concepts and pattern recognition in changing perspectives. I was such as genius in these areas that I was able to process all the items on this part of the test on time or even quicker than most people. I apply these skills in drawing. I did very well in mathematics. I probably scored average in technical skills.
On the other hand, I performed much lower in the verbal area since I was still so far behind in my vocabulary and I still didn’t socialize very much. My creative mind tended to get in the way by coming up with novel associations that confused me of what the correct answers are. I also didn’t test well at reading comprehension. This was because I had difficulty concentrating on the passages in the test, besides lacking the vocabulary for most of these and due to time constraints. I needed more time to be able to think more thoroughly. I scored very low on listening skills due to my auditory processing deficit and an inability to hold things in my working memory to retrieve when asked to.
I used to experience sensory over load when ever I went somewhere out of my daily routine. The testing itself added to my over load of processing so much information. But, I still had good reasoning skills and analyzed my surroundings well.
At home, my parents had an old medical guide, that I enjoyed reading. This was the beginning of my interest in biology. I studied the basic human reproductive system and various stages of pregnancy. This book had a series of photographs for me to refer to. This was my first dose of sex education. In addition, I learned about the four basic food groups, which were the basic nutritional guideline we followed for many years. I read about the well known communicative diseases–polio, tuberculosis, measles, whooping cough, and chicken pox. I considered myself to have very good retention of facts as long as I didn’t study too much at a given setting.
I liked stories with lots of fantasy, such as Alice in Wonderland and Cinderella. The latter was my favorite. I related very well to “Cinderella” in that like me she endured hardships in her childhood, although her hardships differed from mine. I had a great deal of compassion for her. We both experienced rejection; she being shunned and abused by her step family, and I not being accepted by the neighborhood school and children on my block. I also liked that the book had a happy ending.
Occasionally, my mother took me to the theater to watch movie classics such as; “Carrousel,” “Mary Poppins,” “Sound of Music,” and “My Fair Lady.” I enjoyed these musicals very much with the beautiful singing and characters. In “Mary Poppins” and “Sound of Music,” I liked that both the adults and the children were deeply involved in the story line in their respective situations.
In “My Fair Lady,” I related very well to the fair lady–in that she pronounced certain words wrong, such as “Rhine” and Spine” for “Rain” and “Spain” respectively. Before hand, my mother explained to me that like me, she had a speech problem, though hers was from a certain dialect from an unsophisticated lower socio-economic class.
My mother began giving me a weekly allowance of one dollar a week. When ever there was a doll, doll clothing and furniture, or any other toy I wanted to buy, I saved up my money for it and then walked a half mile to the toy store to make my purchase. Usually, I spent under five dollars at a time, which took me several weeks to save. I was always good in managing my money. I never wanted to borrow or get advancement on my allowance. I always paid as I went. Receiving allowance enabled me to develop a greater sense of responsibility from managing money. It felt good to have the independence to spend the cash in any way I wanted without needing approval by my parents.
I bought a special toy with assorted gears with holes for a pen that was used for drawing all sorts of spirals. I used four different color pens for my drawings of spirals. I was very intrigued of how the designs could be altered by the size and shape of circular or oblong of the plastic gear and the hole in which the pen was drawn. I was very intrigued with the possibilities that seemed limitless.
At school, one of my teachers taught the girls basic embroidery with yarn and cotton canvas. My first project was a yellow tulip with green stem, leaves, and grass. I did several other ones with more complicated subject matters; including a sea scene of one of my smallest dolls out in the ocean in her sailboat with clouds and the sun. I also did a self portrait with a skirt and sweater on standing on a parquet floor. I loved this activity very much as I applied my talent in art and crafts. I drew all of my designs with pencil to guide my stitchery.
For several months on Saturday afternoons, my parents signed me up for an art class for children that were held in a community center near us. I only went to about half of the sessions because some weeks I didn’t feel like going. I didn’t like going to the same place week after week. I didn’t feel that I was learning enough to make it worth while.
Several years later when I was in my early teens, my parents tried again and signed me up for another Saturday art class–one that was one-on-one instruction in painting. The older male artist, who worked with me, had a small studio behind his frame shop where he offered classes. This was only about a half a mile from us. There, I worked in oil pastels and in oil paints. I took this private class almost every week for about two months. I stopped going because, again I got tired of going to the same place every week. Often I didn’t have the energy to go. I felt it was much easier for me to do art work at home. I didn’t want to be bothered with any classes on the weekends after going to school all week.
I had several coloring books and kits with sheets of paper outlined for coloring by numbers with Venus coloring pencils. I loved filling in areas with color since I had excellent control. It made me feel good to do things that I had a great deal of confidence in.
A few months before my tenth birthday as I was about to enter puberty, my hormonal levels started to act up and affect me. I became more moody, irritable, and depressed. Whenever one little thing happened, such as losing something belonging to my doll, I would get very upset about it for a whole day–although it wasn’t too often that I lost things since I was generally well organized. I began to develop physically at a very young age while I was still emotionally immature. This made it hard for me. I started to wear bras about a half a year later.
When I went to the day camp at the Jewish school for the second summer, the people in charge and the camp counselors saw that I had regressed from the previous year. So after two weeks of being placed in my appropriate age group, I was transferred in to a group with younger children. Since I was less social than I was previously, the camp officials felt that I would fit in better with smaller kids about three years younger. I would have preferred to have stayed with the other group. I felt like I was being demoted and rejected by that group. But, it worked out fine for me after all. After a little while, I realized that I felt just as comfortable with the younger girls as those my age. A few of the girls were very friendly to me and we played with each other.
Since I was getting tired of my long commute to and from school by spring of 1967, I developed a strong desire to be the first one dropped off the van. I wanted to get home as early as possible. Although over the years, I realized that my drivers needed to drop off other children before me. With feelings of helplessness, I pretended that I was the first one off the bus from day camp and school for over a year. I used to do silly things, such as singing “I’m the First One Off the Bus”, in a borrowed melody to myself.
During the first week of camp that summer, the bus I was on used to go on the major street at the other end of my block from where I lived. When ever we went by my block, I got upset at the driver for not dropping me off–since I knew how to cross that street and I would have been home much quicker. Instead, my ride took about a half hour longer, going in a circle taking several other children home. But, for much of the summer, I was transferred to another bus due to rerouting. The trip home was much more direct with the revised route, so I felt better. But, I still wanted to be the first one off the bus. I didn’t like the idea of anyone having a shorter commute than I. I was envious of a four year old girl who lived just a few blocks away from camp and was the first one dropped off. I was so self-centered that I needed to have the best of everything to help compensate for my inferiority.
For one year when my van took several children to and from another private school in Brooklyn that was similar to the League School, in addition to driving children from my school, the commute was the longest I ever had which made things worse. The long commute was tiring and I didn’t like missing cartoons that were on TV before I got home. I developed an even stronger desire to be the first one dropped off my van at home. One day with my jumbo-sized chalk, I wrote in big letters, “I’M THE FIRST ONE OFF THE BUS” on the sidewalk when I felt silly.
One afternoon when I walked to the Flushing Meadow Park, I encountered a woman on my way home, who was visiting a neighbor near the park. She invited me to her house for the next day. The next day in school we had a discussion about being careful with strangers and not to be trusting with them. We were warned that appearance and words can be deceiving. Though this could be harder to understand with autism, I took that lesson to heart and never visited her. I feared that she would harm or kill me.
We used to go to picnic at that park and lay out in the sun on the roof of our building for some of our family outings. We began to take color slides when we went out and had a small slide viewer for seeing our slides. We took bunches of slides for several months until the novelty wore off. With my first camera that I got as a birthday gift in school, I took a bunch of pictures of friends, houses, and scenery until the novelty wore off.
For fall of 1967 when I was ten, The League School moved into a brand new building that was very nice with big windows on each long side of the building. The school had out grown its old building which was falling apart anyway. There was a long driveway in which vans could drive through and park to pick up the pupils.
I was happy to get along very well with the girl in my class who was two years older than I. She loved to make fun of me, but in a friendly way that I enjoyed.
There was a larger class next door to mine that often invited us to participate in some activities together. We often split up in boy and girl groups. We girls did craft projects using a variety of materials such as Crepe paper, shoe boxes, fabric, ribbons, and bows that we brought in and purchased together at the store.
Other activities included the basics of manicures and shopped for the basic supplies that we stored in our boxes that we made in class with the supplies we bought. In addition, we cooked simple things together such as macaroni and cheese, cakes, and cookies in the spacious home economics room with a full range kitchen.
In my school, there was also a wood shop. Each class spent about an hour a week there. This was one of my favorite activities. I enjoyed making the various projects. I made several things–a wooden top; a memo pad holder of plywood with a metal plaque, in which I punched holes for my own design and a copper strip in which I engraved “Myers” to hold the memos in place; a copper relief made from hammering over a mold of a dog; a plywood trivet with a sheet of copper, in which I punched holes for my design; and a long wooden box with a slide in yellow plastic lid. I also made some individual projects that were my choice, such as doll furniture, a spice rack, and blocks of wood with my own designs cut by the jig saw.
My mother started working full time as a librarian after doing it part time for a little while. She wasn’t home when I came back from school. I was home alone for a short while until Bob came home from school. His shift during his sophomore year in Forest Hills High School used to end as late as five o’clock. Gail went away to University of New York at Stony Brook for her freshmen year and majored in psychology. She graduated from high school early through a special placement program for brighter students in which the eighth grade was skipped. Bob went through this program too. I missed Gail, but at least I had my own room, except during her visits.
Occasionally, I had the basic hearing tests. The results showed that my hearing was about ninety percent accurate. I frequently missed what were being spoken. One of the doctors cleaned out my ears thoroughly to see if that would help, but it didn’t very much. No professionals realized that my hearing problems were related to deficits in sensory processing with my auditory sense, which tend to be inherent in autism.
So, in February, 1968, I had surgery to get my tonsils removed. Doctors thought that this would improve my hearing, but I didn’t notice much difference. This was the first time that I was given general anesthesia. Before I realized, I was out of surgery and then being wheeled from the recovery room in to my room. It was hard for me to believe that the surgery was over. I spent all day and all night at the hospital. My mother stayed all day and left me at bed time and came back the next morning to take me home. I shared my room with one other girl who seemed to have had a much harder time recovering from the anesthesia than I.
I was a very good patient. A positive aspect of this experience is that it took my mind off of my struggles from autism. I stayed home for a week recuperating with a sore throat from the surgery. Grandma stayed home with me and fixed lots of chocolate pudding which was easy for me to eat. In the mail, I received get well cards from my classmates, teachers, and friends at school. It felt good that people were thinking of me. With my low self esteem from autism, I needed plenty of assurance that people cared for me.
For the League School’s annual luncheon, held at the Wardoff Astoria Hotel in Manhattan, several pupils were selected for a chorus group to perform at the luncheon. After these children had practiced and performed, an appreciation party was held for them in the school. When I found out about this, I got upset and felt that I was being left out of the festivities. I didn’t realize all the hard work that was put in to the rehearsals. Only those with the best singing voices in the school were selected. I didn’t have that good of a singing voice and I had a tendency to sing out of tune.
For several years in a row my classes, including me, performed square dancing in front of about a thousand people at each of the annual luncheons. As we walked on and off the stage for one of the performances, I fooled around and did some extraneous stuff that was uncalled for–waving my hand and saying “Hi folks” and “By folks” respectively. After I was counseled on this, I learned not to do that anymore. All of the performers arrived at the hotel with the parents and then met the supervisor who then took us up to two guest rooms that were provided for the children to stay until stage time. But when I was in my early teens, I sat through the entire luncheon with the other girls in my class until we went up in front. It was interesting to see all that went on there.
Once in a while, I would take time out to imagine things about my environment. For example, I used to hang my head upside down from the side of my parents’ bed lying on my back. I fantasized what our apartment would be like if everything was upside down and if we would walk on the ceilings instead of the floors.
In addition, just after I learned about atoms making up all matter in the universe from a museum display, I began to imagine that the series of faint dots that I saw everywhere were atoms in constant motion. These dots–reflections of light off dust particles–became more visible if I squint my eyes into direct light. As I learned more about the basic properties of gases, I started to see these as pulsating energy of the gases that comprise air and fill all our open space. Not all individuals could perceive this. Taking time out to imagine things in the surroundings was soothing and calming for my mind.
My vision tends to be very focused on the details of an object or plant and the surrounding areas are blurry until I shift my focus to another object or plant. For example, I would focus on a bird or a butterfly flying from one shrub to the next. It is almost like changing frames in a slide show. My eyes shift frames of focus about every few minutes or more. I could see the entire view in my visual field as wholes, but without any clear focus. I prefer to see one item at a time with precise clarity. Though I hyper focus, I tend not to let visual imperfections bother me as I generally never have the time or energy to worry about them too much. Besides, I tend to be drawn to view nature and am generally easy to look away from imperfections.
Whenever I first look at something, the general characteristics appear immediately, such as shapes, colors, and textures. As I allow time to process information, greater amount of details appear with more lines, shapes, and variations of color within the broader whole. I need more time to process visually as well as auditorily. There is only so much that I could see at once. For example, whenever I go through a large buffet table with so much visual things to take in, I often miss some food items that I later notice when I go back for seconds.
Attainment of a degree of normalcy in my childhood was made possible primarily with the acquisition of language which enabled me to communicate with others. I wanted very much to fit in my peer group, but with my deficiencies in social development, it was challenging. My interactions with my peers mostly revolved around toys and games in the playground but tended not to rely on more complex socialization. Despite my progress in this area, I still wasn’t able to convince the neighborhood school that I would be ready to be integrated in its classes. Besides working on my weaknesses, I developed my strength which was art.
“And Moses said unto the Lord, O my Lord, I am not eloquent, neither heretofore, nor since thou hast spoken unto thy servant: but I am slow of speech, and of a slow tongue. And the Lord said unto him, Who hath made man’s mouth? Or who maketh the dumb, or deaf, or the seeing, or the blind? Have not I the Lord? Now therefore go and I will be with thy mouth, and teach thee what thou shalt say.”–Exodus 4:10-12
Add comment March 11, 2008
dithorsos
Tags: learning breakthrough visual
Youtube Links to My Early Childhood
Here are some links to my speeches on my early child:
Loving and intelligent family
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Infantile Autism
http://www.youtube.com/watch?v=2Tnfn8vbQwg
Debbie
Add comment March 8, 2008
dithorsos
Tags: chidhood nonverbal family
Harship, Family, and Hope
HARDSHIP, FAMILY, AND HOPE
Spark of Hope
A beacon of rope was anchored from the top,
As the challenge of climbing a steep mountain seem insurmountable.
To accomplish my mission of my life,
I was provided with the support to make me able.
Just when the tunnel of an underpass got too dark to see,
A spark of light began to glimmer from the opening on the other side.
No matter how tough things may get,
Things could change to put the worries aside.
Being without the means to communicate,
And not being able to respond to the words of others,
It would had been very unbearable,
Without any loving support of family and others.
It was the persistence from my loving family members,
To provide supports, opportunities, and rewards,
Which encouraged me to crack the shell of my inner prison,
And develop hope to move forward.
To compensate for my lack of language before I became verbal, I developed my visual sense to take in information about my world and learn about my environment. I have an excellent memory and remember a lot from my early childhood on. My loving family helped instill a great deal of hope in me, which sustain me through my challenges.
My earliest memories in my life are very vague, as would be expected. It felt like as if all at sudden, somebody grabbed hold of my head facing up and pulled me out of my dark comfort zone shelter. As I was being born, I looked up at the ceiling lights and felt very awesome. The lights, spanks, and vaccinations were scary. I came into the world as Deborah Ivy Myers in New York City. My mother told me that I had a weak cry at birth, as if I was somewhat withdrawn already. Both my mother and I were stressed out–it was a very hot and humid day, which was miserable for her.
From one perspective, I was an easy baby–I wasn’t too demanding. I didn’t ask for a lot of attention. But, my mother felt that I was more withdrawn than her other children. My mother was also concerned that I didn’t have as much eye contact with others as I should have.
With my superior visual memory, I remember doing a few things in our duplex unit in the West Bronx, where we lived until I was two years old. I recall waking up in the middle of the night in my crib crying for a bottle. The couple of minutes it took for my mother to bring my bottle seemed like a long while to me. I recall crawling everywhere within the apartment, and grabbing hold of chairs and an ottoman as support for standing myself up.
I also have memories of playing with some toys in the unit–animals of laminated wood on wheels that I pulled along, and building things with sets of blocks. The former, especially the duck, made a quacking type of noise. These toys enabled me to gain a sense of control and mastery of new skills which were good for me in an environment where I had no control without communication skills.
I remember going in and out of our place through the porch with red cement flooring. Even though I wasn’t able to communicate yet, I was very aware of my surroundings–much more than anyone could have imagined. It was much easier to process information from the environs than from other people. Whenever we traveled by bus or car I enjoyed looking out the windows and watching the change of scenery.
When I was around nine months old, I began to provide my folks some more hope, which was unfortunately short-lived–I babbled and giggled for only a short period in my infancy, until I stopped when I was about a year old. I became less responsive and more withdrawn. I had yet to learn to walk. This was when my family started to suspect that something was wrong with me. I remember the frustration of my inability of learning what others would say to me. Though I heard speech sounds, my brain wasn’t able to process them (central auditory processing deficit). The auditory area in my brain was like a poorly adjusted antenna of a radio where the signals received become static or sounds indistinguishable. It was though people were speaking in a foreign language that I could never learn.
I became so discouraged that it was much easier for me to withdraw into my private world than to face the struggle of trying to learn to communicate. So whenever I wanted something, I resorted to screaming for it. It was frustrating for me whenever it would take a while for others to figure out my needs–since I wasn’t able to express them effectively.
Since I couldn’t learn the language through listening, my family initially thought maybe I was deaf–so I was taken to the doctor for testing. This was ruled out, since I did respond to noise. In addition, based on my creations of elaborate designs with crayons, blocks, and other toys–it was determined that I wasn’t mentally retarded.
In addition to my learning difficulty, I exhibited several bizarre behaviors–mostly repetitious, such as rocking and pacing. I used to rock back and forth a lot, since I was about a year old. When I learned to walk, I paced diagonally across the living room for long periods. These activities were meditative and made me calmer. As I performed, I remain in my trances continuously. While I was in my trances my mind wandered into various objects that were in my environment (home), such as furniture and toys, and the shadows that were formed by the sunshine. I also looked out the window to watch the clouds form various shapes, the trees rustle in the breeze, and the other children play outside. I also made repetitious sound over and over again–”dah, dah,…dah”.
When I was about two and a half years old, I was diagnosed with infantile autism–due to a lack of communicative skills and my stereotypic repetitious behaviors. Autism is a neurological disorder in which there is a lack of communicative and socialization skills, and problems with sensory processing. Apparently, I inherited this from my father who had autistic characteristics. The brain functions differently by taking in and processing information from either of the senses differently. The auditory sense is usually the most affected–as in me. I had always had a slight sensitivity to high-pitch sounds, but it was never too bad unless the noise was loud. It is common in autism and related disorders that the infant doesn’t demand enough–even when there is distress as was characteristic during my infancy.
Common to autism and related disorders, I was delayed in developing gross motors skills, such as walking and toilet training. I didn’t learn to walk until I was well over a year old. I was already over three years old until I was potty trained. Even after I was trained, I often had accidents when we would go out, since I was not able to communicate the need for a rest room.
In an attempt to help me, my parents hired a woman to come to our place a few days each week to work with me. She took out various toys, including block sets and puzzles to determine my skills. I also did some drawings and coloring with crayons. I exhibited extraordinary artistic talent for my age in block design and drawing. I lacked good eye-contact skills with other people since I wasn’t able to relate to them and I focused my attention on things. This social worker was nice to me. But unfortunately, she was not able to get me to develop language skills. All I remember of her was that she had dark hair and that she had a pleasant voice.
From the fall of 1960 to the spring of 1962, I went to a special preschool program for non-verbal children at the Jacobi Hospital in the Bronx. My mother took me there by bus three mornings a week. She used to stay and wait in the lobby until it was time to take me home. My class was racially integrated with about ten children. There were a few blacks and Hispanics, along with several whites including me. But, I ignored all of my classmates, regardless of race, since I couldn’t interact with them. It was much easier to focus on the toys since they didn’t demand any socialization.
In the class room, I played with all sorts of toys that were there, such as painted rubber hand puppets, puzzles, blocks, and a doll house with furniture and dolls. The last was my favorite. I loved to play with toys that I could manipulate with my hands and utilize my creativity.
When I was about two years old, we moved into another apartment in a very old building. It was blocks away from the Bronx Zoo. My paternal grandparents lived in that apartment for years, and then moved out. While we lived there, I remember taking naps on our love-seat–during a period in my growth when my height filled up its length of the seats. This opened up to a bed that was used for company. It was on this block where my parents met each other years earlier and found out that they had a common great-grandfather. Their respective maternal grandmothers were half-sisters.
Often on our family walks, in our Italian neighborhood, we stopped to get Italian dessert ices of which chocolate were my favorite. We went to the zoo and the Bronx Botanical Gardens and Park sometimes when the weather was nice. Walking enabled me to reduce nervous tension from the frustrations of dealing with my disability.
I was born into a loving and highly intelligent family of an Ashkenazi Jewish background. I was the third and youngest child of the family. My sister, Gail, was six and a half years old. My brother, Bobby, was almost four. Gail was very close to me, since I was the same gender as her and besides I was very cute. She kissed and caressed me a lot. She took me almost everywhere in a stroller, usually with her friends. I have fond memories of being pulled along in a baby carriage and a stroller with colorful plastic beads that I remember playing with. Though I enjoyed hugs and back massages, I used to bite or push people away when there was too much closeness–especially too many kisses and tickles. For example, when Gail kissed me too long, I bit her lips shut with my teeth.
Gail would often take me out with her friends. We got together almost all the time with her best friend who was very cute and blonde. Whenever Gail wasn’t able to take me along, I used to cry and scream to express my disappointment of being left behind at home. When I was a few years of age I began to feel lonely whenever my siblings went out to play without me, especially Gail since she often took me along. Even though I wasn’t able to communicate I enjoyed being with other children. I sensed the love, warmth, and acceptance of my siblings and their friends. Gail selected only girls who accepted me since she wanted to include me along in her outings. Since I wasn’t able to socialize and make friends on my own, I was dependant on my siblings for company. In addition, when we were home, Gail played clapping games with me, such as “Pat-a-Cake,” and a few others.
I have memories during the summer, occasionally, of a mobile amusement park and carnival on wheels parked on our street. I was too afraid to go on any of the rides. I was too out of it to participate in the carnival. But, I still enjoyed the excitement and festivities around me. I watched all the neighborhood kids have fun. I felt the jubilation in the air. At other times, Gail and her friends played outside a lot. They played jump-rope, hula hoops, and hopscotch. I watched them a little bit. Bobby also played outside with his friends, but played mostly ball games.
I played with a few of Bobby’s toys, which included brightly painted metal tops, a blue metal gyroscope, wooden yo-yos, and a rector set. The rector set consists of all metal sheets in various sizes with holes in these and nuts and bolts to hold them together. Bob also had a nice electric racing car set with an eight-shaped track. I played with him with this toy occasionally for fun only, not for competition.
When Bob was in first grade, he loved animals and wanted a dog very much. So, one winter day, my mother took Bob and I to the animal shelter for a dog. We picked out a medium sized, golden brown female dog. She was around ten months old. She was believed to be of a collie/ spits mixture. She responded to us with warmth and excitement. We named her “Honey” because of her color. She also had some little white areas on her tail and on her abdominal area. This was Bob’s gift. He agreed to take on the responsibilities of raising a dog, such as feeding it and taking it out for walks. He was very responsible for his age. Honey was very smart.
She must have sensed my disability. Even though I played too rough with her, such as poking her with pencils and pulling her tail, she tolerated me. She never growled nor bit me. I loved her and used to pet her often. I had a greater affinity towards her than other people since it was much easier to relate to her as she didn’t command understanding of complex social skills. I felt that she loved me unconditionally no matter how disabled I was. I also felt a release of nervous tension whenever I petted her.
Grandma Rae, my maternal grandmother, helped out our family very often with baby-sitting and cooking. Once a month, she came and stayed with us for a week. Whenever she planned to go away, she prepared plenty of meals beforehand for her husband, Grandpa Aaron, since he didn’t cook. Grandma Rae was very loving and caring. She loved to feed us. She was very good to me as well to others. I remember when I was little; she fed me cod liver oil, for vitamins A and D, through a dropper. Unlike most other children, I liked the taste. She was very broad boned and short with a tiny lap. Her growth was stinted from rickets she had as a child from malnourishment. She grew up in a large family in a Jewish ghetto (shetl) in Poland.
We often had Jewish ethnic foods including gefilte fish that consisted of ground up fish (pike, carp, and cod) that is cooked in its broth with carrots and celery. It is served chilled with beet-colored horseradish and matzo. A Jewish spread that my family had often was chopped liver salad–made of chicken livers, hard boiled egg, little bit of onion, and mayonnaise. We took out hot-dogs and cold cuts from the delicatessen quite often. We had chicken much more than beef. Whenever Grandma Rae stayed with us, she always made home-made chicken soup with matzo balls (dumplings). Occasionally, she made a flour product with beef filling (kreplach) to put in the soup, all from scratch–similar to ravioli. We occasionally had a beet soup recipe (borscht) which was often served cold with sour cream. Another Jewish dish we had regularly was Kasha (buckwheat) with flank steak–prepared like beef stew. Closer to a beef stew, she made a meat dish with potatoes and vegetables (cholent) that was cooked over a slow heat for 24 hours. We also had some sweet dishes such as; crepe-like product with a cottage cheese filling with apples, raisins, and cinnamon (blintzes), noodle pudding (kugel), and sweet potatoes cooked with prunes, raisins, and pie spices (tsimmes). In addition, Grandma Rae used to bake ethnic products, such as sponge cake and egg bread rolls (challah).
I remember in the early 1960’s, when my mother went back to school to take up early childhood education that Grandma Rae took care of me during the day. Grandma used to bring doll-making kits, which involved the body to be cut out, sewed together, and stuffed. The hair was made of braided yarn and glued on to the head. Despite not being able to understand verbal cues and appeared to be in a world of my own I felt the warmth of my grandmother’s love and that she cared for me very much.
She also took me out on walks to grocery stores for a little shopping. I recall all the stores back in those days having wood floors. Whenever, we went shopping, she always picked up cookies for me, such as Nabisco’s Lorna Doones, Oreos, and Animal Crackers. Sometimes we picked up food for ethnic things, such as freshly killed fish at a fish market for home-made gefilte fish that Grandma made from scratch. We also used to buy whole cod, to be cut up for pan-grilling, and whitefish, that was marinated and served cold as a whole fish. I loved her cooking. Not only did she nourished my physically with food but also spiritually just as well with her soul and love.
Grandpa Aaron had brain damage from a bad fall on his head, when he was about three years old. But, he was able to work in the shipping department in a clothing business, owned by members of his side of the family. He used to act childish. He never came to our place. Occasionally, we visited them for the weekend, so we could see him too. I had empathy for him as both he and I had disabilities though of a completely different nature.
Just across the street, my mother’s uncle, Max Chasen and his wife, Ann lived in another very old apartment. Their fourth child, only about a year older than Gail, was nicknamed “Big Bob” to ease confusion as having the same name as my brother. Their second daughter, Gertrude,”Gitty” and granddaughter, Rose Ellen moved in with them when her husband deserted them. Rose Ellen was born only three months before I was. We were very close to them. We joined them in all the Jewish holiday gatherings.
A few trips with my family were etched in my early childhood memories. For example, I remember, faintly, when I was about four years old, we went to New Jersey for a large family reunion of the Chasen family. Another outing that I remembered vaguely was when we stopped, on our way home from somewhere, and walked into a large building with huge rooms that contained a lot of tables or desks. The walls were a pale blue-green. We were there for only a few minutes for my father to pick up something. It must have been his work place during that time.
My father had some autistic characteristics, although he was never diagnosed as a child. He displayed autistic behaviors–nose picking in public, poor table manners, compulsive behaviors, imbalanced emotions, and social ineptitude. Whenever he picked his nose at home, he rolled his fingers around and flicked them over an ashtray. We would all get grossed out by this habit, especially when I was older and learned that this was socially unacceptable. Right after he would be done eating at the table, he licked his plate or bowl. This used to irk my mother, but any deviation of proper table manners never bothered me. I inherited some of the things from him such as compulsions, poor table manners, and a lack of confidence in social situations.
He also exhibited some compulsive behaviors, such as persistence in finishing reading the newspaper or a chapter in a book, even if it would lead to leaving late to go places. In addition, he felt that he had to do several last minute things, such as polishing shoes and ironing clothes. This would make him or us even later to events or visiting people. Both my mother and I used to get impatient with him when we were all ready to go and he still had many things to do yet. My mother always wanted to get someplace early.
His speech was stuttery. He was deficient in good social judgment. Whenever we got together with people, he would monopolize a conversation in his field of interest and wouldn’t give others a chance to talk. He wasn’t able to sense when people have heard enough of the topic. He tended to talk excessively about a subject that nobody else is interested in. His listening skills were very poor.
Like me, he also had a learning difference as a child. Although he had superior math and engineering skills, he had a hard time in school with subjects that utilized verbal skills since he was weak in those areas. In college, it took him as long as eleven years to complete all the requirements for the bachelors degree in electrical engineering from having to repeat some of the basic required courses in addition to working full time to support our family. When he was employed as an engineer with the federal government, he stayed at the same grade for years and years.
He had never received promotions along with the other engineers who put in the same number of years of service as him. It was his deficiency in his communicative skills that got in the way of making favorable impressions upon the employer that he could take on more responsibility. He would have difficulty in supervising other employees as would be expected with positions with greater responsibilities.
Beneath his disability, I felt his love for the family, including me. He had difficulty raising us children. But, he tutored Gail in math and played ball games with Bob. It was basically my mother who raised us since she didn’t have autism.
Occasionally, my family and I went to visit my paternal grandparents, in their apartment in high rise housing project in Manhattan. Sometimes, we had a family gathering of my father’s side of the family with both of his brothers and their families. Other times, we all met at the oldest brother’s fancy apartment in an up scale area in Manhattan. His name was Al. He was twelve years older than my father, so they weren’t that close. He and his wife had only one daughter who was much older than Gail, so they didn’t have any children close to our ages to play with.
My father’s other brother, Jack, was nine years older than he and also lived in Queens. He and his wife had three children close in ages to Gail, Bob, and me. They had boy, girl, then another boy. We got together with them a little bit more often. When I was older, I played dolls with the girl who was two years older than me. Bob played with the boys.
In spring 1962, we moved in to a two-bedroom apartment in Forest Hills, Queens. The main reason for that move was so that we would live close enough for me to start a special school in Brooklyn the following school year. The apartment, with only one bathroom, was cramped for five of us plus a dog. Sometimes, there were even six of us whenever Grandma Rae stayed with us. But, we managed since that was what we could afford back in those days.
Forest Hills was a Jewish neighborhood, which was nicer for us. Our area was full of moderately tall apartment (mostly six to eight stories), including ours which had six. There were a lot of Jewish bakeries and delicatessens within blocks away of which we often patronized.
One day when Gail took me shopping for groceries, which was around a half mile from our place–I walked out of the store as she was looking for something. I wandered all over the neighborhood for hours. I had already been through the area and the store several times with my family, so I knew my way around by then. In addition, I had already an excellent sense of direction at the age of five years when this happened. I also learned how to cross the streets from the family walks, in which we crossed numerous streets. Luckily, I didn’t need to deal with very busy streets and major intersections. Moreover, I wandered into several apartment buildings and knocked on doors. One woman who was very friendly let me in her unit and served me milk and cookies. Then, I walked out and continued towards home. It felt good to have the freedom to walk anywhere I wanted with any constraints by family members. I was just happy-go-lucky to go along on my own without any concerns of the world.
When I was just across the street from our building, my mother spotted me and ran to get me. She yelled at me hysterically: Since I lacked communication, everyone was even more concerned about my disappearance. They all assumed that I was lost and didn’t learn to watch out for cars while crossing streets. There was no way of knowing since I didn’t talk yet. The police were called to search all over the area for me. Everyone was so relieved when I finally came home. I didn’t feel lost since all of the streets were familiar. Unfortunately, I wasn’t able to foresee the great deal of worry this would cause my family and the community.
In addition, I got into some more mischief, such as throwing books out the window in our apartment that was all the way up in the sixth floor. I did this my first time, just before our move, where there was only two floors. Everyone was angry with me. From then on, I learned not to do it again.
Not only did I throw books, I also threw Gail’s brand new watch out the window, but from Grandma Rae’s apartment that was much higher up (twelve stories). Gail got this watch as a nice gift from graduating sixth grade or elementary school. I was just fooling around. The whole family was even angrier at me that time, since the loss was much greater. I really felt remorseful, so that I have not thrown anything out the window since then.
During the summer, we used to take the bus to the Far Rockaway Beach on the Atlantic Ocean several times each season. We took along our blankets and lay out in the sun for a few hours. I enjoyed playing in the sand–building castles and other sculptures, drawing pictures, and burying my legs. Whenever I got hot from the warm sun, I waded in the ocean to cool off. I never went too far out into the water–I feared that the big waves would swallow me up. So I wasn’t interested in learning to swim, like most of the other children my age.
For a while, we had frequent get together with good friends, Rolly and Anita, of my folks. They had three daughters–the oldest one was just a year older than me, and the other two were two and four years younger than me respectively. I played mostly with the smallest girl who was a toddler then. I related to her the most since I was closer to her level socially and her older sisters were already ahead of me. The one-year-old girl and I felt a special affinity to each another on a level of the early stages of acquiring language skills. We had picnics in a park together.
With the increased demands from raising a child with a disability it is very imperative that all of the family members receive adequate supports. The challenges of caring for a person with a difference when very little was known about it, tended to effect the dynamics of the entire family including mine. It was emotionally draining for my entire family, especially when I exhibited enigmatic behaviors and wasn’t able to communicate. Things would have been much tougher if we didn’t get the generous supports from my grandmother, close friends, and community programs. This enabled me to light the flames of my hope for progressing into other stages of my life.
“Which hope we have as an anchor at the soul, both sure and steadfast and which entereth into that within the veil.” Hebrews 6:19
Add comment March 6, 2008
dithorsos
Tags: book, early childhood, family, life
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