BUILDING MY WINGS

Soaring up to New Heights

As the bird develops its wings,

And emerges from the nest.

It flaps it wings awkwardly,

While putting its independence to the test.

It may fall several times,

Before it soars up to greater new heights.

As it practices and gain experience,

It would surely achieve its sights.

I felt sad at the same time I felt some excitement of leaving home for a big adventure of moving so far away from mom and dad and living independently.  This was a period of my life with greater anxiety and a great deal of learning as I struggled through navigating my early adulthood.  I greatly appreciate the new connections with people who were very interesting and supportive.

 

On Sunday morning, January 18, 1981, my mother and Tom drove me to the Trailways bus depot for my departure across the country to the state of Washington.  I wanted to see more of the nation going by bus rather than flying in an airplane.  I took two suitcases to get started on my own and left behind the rest of my belongings to pick up little by little as I come back to visit.  As excited I was about making a change and moving to another place and looking forward to make greater choices in my adult life, I also felt sad to leave my parents, sister, and nieces.  My mother felt sad too and was in tears that I was leaving.  But, she understood that I was entitled to choose where I would live and work since I was an adult and capable of living on my own.

To keep myself occupied especially during stops besides looking out the window at the scenery, I brought along leftover yarn to crochet triangles to be sewn together into a soft sculpture.  Since I didn’t want to rely on expensive junk food that was sold along the way, I packed my own food that would last for several days, including cans of V-8 juice and plenty of homemade crackers that I had baked.

I loved taking in the scenery and the novel sights of wide, open spaces as the bus travel through the Midwest and the plains and to the Pacific Northwest.  The vastness of the fields and farms through sparsely populated areas was a novelty to me since I had lived in large metropolitan areas all my life.  It was interesting to view thunderstorms from miles and miles away and see cattle roaming close to the road.  It was fun going through and stopping at small towns along the way that looked so different from the large cities that I was used to.

Even when I got sleepy I tried to force myself to stay awake to look out the window until I fell asleep.  I wanted to save my dosing off until dark when I couldn’t see as well out.  Luckily at night I had two seats to myself so I was able to stretch out more in addition to reclining.  Even though I was able to fall asleep through the night, it wasn’t a restful sleep.  I woke up every two hours each night.  That was okay since I automatically dosed off when I was drowsy enough.

Through out the trip I met some friendly people who sat down next to me and we would chat for a while.  I sat with one woman at a restaurant while she had breakfast, though I purchased nothing during stops, including those allotted for meals eaten out, to enjoy her company.

During my final day before arrival in Seattle, I had the most interesting conversation with a friendly older woman who was on her way home to Bremerton in the Olympic Peninsula.  She was a foster grandparent to a boy with autism.  That put her in a good position to understand my challenges and to sustain a greater interest in me.  I was impressed to meet someone who was involved with autism.

All the way across the country, the weather was relatively mild for that time of the year.  There were no snow and ice on the roads that made traveling so much easier.  The mild temperatures made it nicer for getting out during stops to stretch my legs and go for short walks whenever I was given enough time.

When we entered the rainy Pacific Northwest, I was amazed how green everything was and that certain trees were in the early stage of blooming.  I had heard that the Northwest tends to get milder winters, but wetter, than the east coast with comparable latitudes.  I didn’t mind the rain since it is just water that our bodies need unless there is enough of it to cause flooding.

 

Finally on Wednesday evening after traveling three and a half days, all day and night by bus with a transfer in Chicago, Illinois, I arrived in Seattle.  Jean (Bob’s companion) picked me up and drove me to their place where I stayed until I found other arrangements.  I took one day off before I got involved with the Washington Protection and Advocacy System (WPAS), then the Troubleshooters, to do some volunteer work.

In the mornings around seven thirty while I stayed with my brother, he drove me to the South Kirkland Park and ride on his way to work to catch any of the express buses to downtown Seattle.  This was easier than walking about a half a mile to the commuter bus that ran through the neighborhood and to downtown, especially since that went by only once every half hour during peak periods compared to every five minutes from the park and ride.  I transferred to a bus that went up the hill through the Queen Anne neighborhood and back down to the Interlake area where WPAS had its office located in the Northwest Center for the Retarded.  I came back to Bob’s place late afternoon on my own.

After a week of going back and forth, I picked up a reduced fare permit in downtown as my bus fare for the month of February.  A doctor who stopped in the office one day signed the application form for the permit for reduced bus fare for senior citizens and disabled people, indicating that I had a permanent disability.  I didn’t have any idea that there was a program in which I would be eligible to go on bus with the reduced rate for those with disabilities until someone in my office brought it to my attention.  The permit itself cost only a dollar and had a photo of me.  This saved a lot of money.  WPAS paid for the monthly stickers while I did volunteer work.

For WPAS, I did basic office work, such as collating, stuffing and addressing envelopes, and copying.  One female worker, Carolyn, supervised and assigned tasks to me.  She was responsible for getting things ready for mailings and distribution.  .  She was a very friendly woman and I valued her as a good human being more than anything that overshadowed her challenges.

Carolyn was poor and lived in low-income housing for women in an old hotel that had been converted into apartments with community lounging areas and cafeteria that served meals for the residents.  It was located in First Hill, close to several hospitals and medical research centers which were just up the hill from downtown Seattle.  She had three children whose father had custody from their divorce and had them visit her on the weekends.

One evening I planned to go to a fund-raising function with the Washington Chapter of the National Society for Autistic Children (WANSAC).  After work Carolyn invited me to her place and treated me to dinner in the cafeteria.  From there we went together to the function that included hor d’oeuvres and a live band playing Jamaican Ray Gay music.

I had done the illustration of a Jamaican musician singing to the microphone for the flyer that was distributed.  I was interested in seeking a career in producing illustrations where I would utilize my artistic talent.  Also for WANSAC I had done an abstract design for a calendar also as a fundraiser.

As part of my job to prepare me for self-advocacy, I attended monthly meetings where advocates with the protection and advocacy system gathered together for ongoing training and support.  Even though I still had difficulty in paying attention to the talks I still enjoyed going to meet with other people and to get out of the rut of the routine office work.  I also liked that sometimes coffee and refreshments were served.  Though I took in the information such as disability and legislature issues in bits and pieces, I absorbed enough of it to understand the gests and how I might be able to apply some of it in the future.

While I still stayed with Bob, I received rides to and from these meetings from a friendly woman, named Mary who had just moved to Bellevue that was very close to Bob’s.  She and her husband had a son with Klinefelder’s Syndrome in which extra “X” chromosomes are present in the genome that effect mental outcomes and behavior.  Mary volunteered for WPAS through a government program, Volunteers in Service to America (VISTA) that paid a stipend to cover basic expenses.

Mary and I developed a good rapport with each other due to our mutual understanding of dealing with the hardships from disabilities though ours were different.  One evening on our way home from a hearing at the state capitol she and her husband treated me to dinner at a restaurant.  At another occasion, they invited me to their lovely home for dinner and the night over breakfast after I called to check on how they were doing.

In addition, the executive director of WPAS, named Katie, took me along to hearings on disability issues in Olympia, the state capitol of the Washington State.  During the early eighties when the government funding was tighter the legislature proposed cuts in services for the needy, including those with disabilities, and said that parents should pay a greater portion for care of their children with challenges.

 

Katie and her husband Duane, who founded WANSAC’ had an adult son with autism who was mute.  The son lived at home with live-in attendant care and attended a day work program at the Northwest Center for the Retarded.  One weekend, I was hired as a substitute to provide him attendant care.  On that Saturday, I went with him on the bus to meet a group of adults with disabilities for an outing to a bowling alley.  I supervised him to prevent inappropriate behaviors and from getting out of control when they occurred.  I also took him out for walks in his neighborhood.  It was easier for me to take him out than to come up with more interesting activities in the house.  Even though I had some understanding of autism from my personal background, I lacked confidence in providing care for the weekend.  I had no problems in the basic things such as getting him ready for the outings and preparing meals.  I had the most difficulty in initiating things to do that he might enjoy.  Katie sensed that I didn’t feel quite comfortable with the job and didn’t hire me again.  Overall, it was a good learning experience for me.

Katie was impressed with my progress after I told her about my story with autism, especially since I wasn’t as affected with it as her son.  She expressed a great deal of optimism in me, though I still had long ways to go in overcoming my challenges.  I still had a speech impediment with voice modulation problems and difficulty of getting into the flow and rhythm of group discussions.  She was very nice to me.  One evening, she treated me to dinner at a restaurant with several other people and invited me to sleep over her house, so we could leave together early in the morning for a hearing in Olympia that was about an hour and a half drive south from Seattle.

While I was at WPAS, I volunteered one hour a week on Thursday mornings to give basic instructions in art to a class of adults with mental retardation.  During the first session, I had given them a whole list of things to do without breaking them down into simplest steps that they could follow better, such as drawing a circle on construction paper and cutting it out, which was beyond them unless I simplify my instructions.  Most of the people were not able to follow my directions and had blank expressions on their faces.  It didn’t take me long at all to figure out that I needed to go over each step, one at a time slowly in order for their brains to process the activity for learning.  This was my first experience in working with people who were mentally deficient.

In that program, some of the participants were very friendly and outgoing despite their retardation.  One woman, named Sharon, was very social and always said “hello” and asked me how I was doing with a smile on her face.  She emanated innocence that tends to be lacking in many people who are more intelligent.  On the other hand there were a few individuals with autism who were extremely withdrawn.  It was very good to be exposed to the diversity within that group as I learned much more about people, from the more severely withdrawn who were non-verbal to the most gregarious who hugged and talked to everyone.

WPAS was generally good about hiring those with disabilities.  There was one woman with rheumatoid arthritis whose hands and legs were disfigured from the disease.  She wore braces to provide support for her hands and arms and walked with a cane.  She did paralegal work with an attorney at the office.  She was going to school to study law with an aspiration to become an attorney on disability issues.

In addition, there was a woman with obesity and glandular problems who had a developmental disability.  She had a speech impediment with disfluency and slowed speech, but she was very articulate.  She did secretarial work for the office and was involved with the People First organization that is made up of people with disabilities to promote self-advocacy.  She lived in a group home, the Liberty House, with five other adults with challenges and a housemother.  It was located in the Ballard neighborhood in Seattle where there is good bus service.

The office also had a prime advocate who answered all of the incoming phone calls and directed them to the right people.  A very friendly woman, named Barbara, from Arizona with a college degree and a background of working for the criminal justice was hired for the job.  She was over a year older than I and we became friends.  One evening we met at the University District to browse through the interesting shops and to buy tights to go with the dress for an evening out with Bob and Jean.

Another very friendly woman, named Laura, had begun to work for WPAS as an advocate for individuals with autism just before my arrival to Seattle.  She had grown up in New Jersey and worked for Co-Ad Inc., Idaho’s Protection and Advocacy Agency in Lewiston, Idaho as part of the Comprehensive Employment Training Act (CETA).  She was close to my age, a little bit over a year older than I and we also became friends.  She helped me often by driving me to all sorts of places from the WPAS office to cooperative housing with rooms for rent, the Department of Vocational Rehabilitation (DVR), employment workshops, and job interviews.

 

Several times throughout 1981, I attended monthly WANSAC parent support group meetings to meet parents of children with autism for them to learn from my personal experience.  I was well received by the group, especially during the early eighties when hardly anyone diagnosed with autism spoke about first-hand accounts about the disorder.  It was a refreshing change for them from only professionals giving talks on their work.  Since the autism spectrum was still very little known, most of the children and adults who were known to be effected had classical or the more severe to moderate cases where they could hardly communicate or speak at all in a normal mode.

I felt elated that people were impressed with my progress of dealing with autism as I was much less affected and had overcome many things, though I still had long ways to go to overcome my related difficulties.  Following the first meeting, I was featured in the WANSAC monthly newsletter for March 1981, Autistic Diary:

               

                “At the February WANSAC meeting we had the pleasure of introducing Debbie Myers to our members.  Debbie is a 23 year old autistic woman who recently moved to Seattle from Maryland and her discussion of her own experience was very enlightening to everyone who attended the meeting.  Debbie is extremely well read on the subject of Autism and seems to have a thorough understanding of her disability as can be seen from her story:

 

                ‘I was born on July 21, 1957 in New York City.  I suffered from childhood autism. I believe my autism was linked with auditory aphasia in which I had difficulty in decifering the messages I heard.  For instance, when people spoke to me it sounded like a foreign language.  I couldn’t learn to talk until I was 5 years old, when I learned to read by associating pictures with words.  These associations opened up new pathways into the auditory processing unit in my brain and provided me opportunities for new experiences.  Before I became verbal, I did some bizarre things such as rocking back and forth, pacing, and throwing books out the windows.  At this time I was enrolled in a special preschool program in Decoby Hospital, New York.  While in this program and in the following few years, I was able to do amazing things for my age such as building elaborate block designs, drawing according to rules of linear perspective, and working with simple fractions.

 

                From ages five to fifteen years old I was enrolled in the League School for the Emotionally Disturbed, where I began to relate to others at a rudimentory level.  When I was 8 years old my behavior patterns became normal and I began socializing more appropriately with other children in my age group.  At the age of 10, as I entered into pubescence, my behavior regressed and I developed unusual obsessions such as needing to be the first person off the bus.  I was having great difficulty concentrating in school throughout puberty and my studies suffered for the next few years until I was 12 1/2, when my behavior once again began to improve.  I was soon better able to concentrate and developed an interest in the sciences.  I did well in math and excelled in art.  My overall performance in school was average according to normal standards for kids my age.

 

                After a temporary stay with my older sister in Ohio where I first attended public high school in the tenth grade for one semester, I moved to Pennsylvania with my parents.  I continued in public high school there until a move to northern Virginia, where I graduated in 1976 at the age of 19.  My overall high school academic performance was good as I had finally learned how to study correctly and became a diligent student.

 

                The following fall, I began my college career at Northern Virginia Community College where I received an Associates degree in Fine Art after 2 years.  I then attended the University of Maryland where I graduated in December 1980 with a Bachelor of Arts degree in Visual Fine Art Studio with a minor in Zoology.  My college academic performance was excellent and I enjoyed all my various courses, my favorite being print making.        

 

                In January I moved to Seattle to be near my older brother in Bellevue, with whom I am currently staying.  I am in the process of looking for housing, preferably in a co-operative living situation, and I am searching for a job.  I would like to be employed as a medical illustrator but would be interested in any work in the art field.  At the moment I am involved in doing volunteer work in the Troubleshooters office and doing work with one of the programs at the Northwest Center.’”             

 

I inserted this biographic sketch without any corrections in grammar and flow to reveal more of my thought processes back then.  Like many others with autism, I included some details that weren’t necessary and didn’t add anything to it other than showing my obsessions of doing well in school.  I even exaggerated my college scholastic performance to boost my ego into believing that I did better than I really had.  Also like many people with the disorder, I didn’t elaborate as much on my interests and hobbies, which was more pertinent to who I was.  Overall, it was very interesting and educational for the members to read.

 It was very good for me to have regular contact with those with more severe disabilities from both the general diversity and autism community.  This had continuously to remind me not to take any of my capabilities for granted and to enable me to gain more understanding of the struggles some people endure with everyday activities that most of us take for granted.  This gave me even greater appreciation for all sorts of people who function at various levels.  No matter how severely effected they were, I felt the beauty of the depths of their soul.

 

One evening when I needed a room for rent, Laura drove me around to look at places that were advertised in the University of Washington.  First we checked the student activities building, the “HUB”, for the want ads on the bulletin board where all sorts of things were posted including off-campus housing.  Since generally many students need a cheap place to live, they opt for cooperative living situations that are less expensive than a small apartment by oneself.  I selected a few in Seattle that were on the bus line and wasn’t far from the university to see.

It was very difficult to find a cooperative living situation in the community that accepted me.  One of the houses where I inquired about a room for rent was very old and had numerous steps leading up to the front door.  A mother with young children rented out rooms in this house to a few people.  I liked the idea that each renter prepared own meals and had their own cupboard space in the kitchen since I was on a special diet.  Though, I sensed that she wouldn’t feel too comfortable with me living there.  She said that she would call me back to let me know her decision, but she never got back to me. 

We went to another housing prospect that was owned by a young single man.  Since he had space for as many as six people, he had two refrigerators in the large kitchen to provide enough room for each individual to store food.  It seemed like a nice place that was close to several bus lines that could get me to downtown or the university easily.  Like the other person I saw for the other place, the young man didn’t seem very receptive of me and indicated that he would call me to let me know about his decision within a week.  He did inform me that he chose somebody else.

As it approached towards the end of February when I already had been with Bob and Jean for over a month, I felt discouraged about ever finding a room in a cooperative house that was in satisfactory condition with a reasonable rent where I would be accepted.  I was taken aback by the interviewers in the places that I was interested who never gave me a chance to become part of their community even though I was confident that I could get along well with others.  Unfortunately, it was still painfully obvious that I had some neurological condition with my appearance and speech impediment.  Since these folks didn’t have any understanding of my background, they felt uncomfortable about taking me in, due to fear of the unknown caused by preconceived idea they had.  This lowered my self-esteem that wasn’t that high to begin with.  While I thought that I was acting normally, I had no notion of what I did that turned strangers off.

 

One morning when I was at the office, I expressed my concerns of finding a suitable place to live, a friendly woman, Ramona, who came in occasionally to do volunteer work happened to be around and overheard me.  Ramona who had seen me only a few times offered me her place to stay.  She had a greater appreciation for my struggles to make it on my own with my challenges since she had two sons with cerebral palsy, one who had died.  That same day, she took me out to lunch at a restaurant and showed me her house.

During the following weekend on March 1, 1981, Bob moved me to her place that was located in Brier, a small community in south Snohomish County nestled between Mountlake Terrace and Lynnwood and north King County.  I was about twenty miles north from downtown Seattle.  Though I had been contented while I stayed with Bob and Jean for the six weeks, I needed to move out so they could have more privacy like most other families.

Even though I didn’t have my own room and slept in the recreation room, I felt that I had a much better deal than I would have if I moved into any of the houses I saw in Seattle.  First of all, it was better for me to be with someone, who had dealt with disability issues, rather than with folks who lack any understanding by not being exposed to such.

Secondly, I wasn’t quite ready to live in the middle of a large city again such as Seattle.  I liked to be farther out where there were more trees and fields and where the houses were farther apart.  Whenever I was home, I went out for long jogs/walks to explore as much of the area as possible.  Sometime I was out for a few hours at a time.  There were tall Douglas firs and other trees everywhere and several horses and goats around.

Thirdly, unlike the other rooms that were available, I wasn’t charged any rent since Ramona understood my situation and wanted to help me out.  One morning, she drove me to the Department of Social and Health Services (DSHS) at the Mountlake Terrace branch to apply for food stamps since I was on my own and wasn’t earning any income.  I received them immediately upon my appointment and bringing in a note that I was staying with Ramona rent-free and a letter from the doctor describing my disability.  Though I appreciated getting the food coupons to cover my food costs, I wanted to be hired somewhere with adequate pay and health care benefits, since I was over the age to be covered under my father’s insurance plan and wasn’t able to afford my own.

 

Arrangements were made by WPAS for me to go to a psychiatrist who was familiar with autism to interview me for an assessment.  Like myself, Dr. Reichler was a Jew from New York City and he recalled observing the special preschool program in the Jacobie Hospital in the early sixties that was about the same time that I was in a class there.  This contributed to the good rapport I had with him.  In his report on me that I read later, he indicated that my posture and bodily movements including gestures were little bit off and excessive use of hands and head.  He also noted about my speech impediment (disfluency with a lack of control of voice modulation) and a lack of self-confidence by the way I carried myself.  I tended to talk too loudly as I wasn’t able to hear myself as well as I should had.  He wrote down autism as diagnosis.

As part of autism, I didn’t always communicate what I was supposed to.  For instance, after I told everyone, including Bob, that I was planning to attend the WANSAC parent’s meeting for March, I failed to inform people of my decision of not going, though I wasn’t sure until the last minute.  I debated whether I should go or not as I had a low-grade gastro-intestinal virus and a long commute in the evening.  I was home for a few days to rest.  I almost got ready to go, and then I decided that I would still be too weak to walk over a mile to Lake Forest Park to catch the only bus that ran through the general area in the evenings and weekends to Seattle.

I felt worse and remorseful when Bob called me after he especially went to the meeting to see me and was disappointed that I had not shown up.  I didn’t blame him for his anger, since he had to drive across the lake and back on the floating Evergreen Bridge all for a no-show.  I realized that it was important for me to make my final decision by the morning of the meeting, stick to it and let people know.

 

Despite differences in our personalities and values–Ramona more conservative and I more liberal–she was very nice to me and treated me like a member of her family and we got along very well.  She took me everywhere with her, including taking me along to visit her best friend who was Italian and lived close by within the neighborhood and to see the home for people with cerebral palsy in the north end of Seattle.

One weekend when Ramona’s husband came home from Bend, Oregon where his job was, I went along with the family, including the son with cerebral palsy to their trailer on their property out in the country in Arlington, Washington.  It was less than an hour’s drive north.  I was thrilled to see the countryside as I went out for a long jog.  This helped release the tensions and concerns that I had about my employment prospects.

I also was invited to go along on a much longer trip to eastern Washington for a few days.  Ramona had some business to take care of at a religious school, the Walla Walla College in the town of Walla Walla.  Since this school was owned by the Seventh Day Adventists, there was good vegetarian food in line with their dietary beliefs and mine too.  Food was still an obsession of mine.  Besides seeing the scenery of driving through the mountains and desert and jogging in the vicinity of the motel we stayed, I loved being provided with meals with unlimited quantities in the cafeteria.

On the way home, we stopped in a migrant town, Sunnyside, with a high Hispanic population, to visit a Mexican friend.  Despite a late start and that stopover, we made it to Seattle for my dinner invitation with Laura, a friend from WPAS to meet Charlie Hart, a member of the autism society, and his family, at their house, who was very active with WANSAC.  Charlie had both a brother and a son with autism.  The brother was in my art class at the Northwest Center.  We told our stories so we could learn from each other that were the main objective of the evening.  This was a fun way to get some autism training.  Laura stayed for a week with Charlie’s family to learn more about them.  I slept over and was served breakfast, since there was no way for me to get home so late in the evening.

 

After staying with Ramona for three weeks, I moved out and stayed with Katie and her family.  Katie, Laura, and I discussed that it would be better to be in the city since there was better public transportation for me to get around more easily for looking for jobs and weekend and evening recreation.

But, the thing I did wrong was that I had Laura transport my belongings without talking to Ramona before hand about it.  When I called her after all of my stuff was out of her place, she was disappointed that I didn’t inform her about my move even though the situation wasn’t set up for permanence.  She was shocked that it was done so fast without any warning.  I felt very remorseful and sorrowful.  I hated the idea of making anyone feel bad due to my wrongdoing and lack of communication.  I learned from this experience that people need at least a week or so to be informed of and to adjust to change that involves them, regardless of how temporary the setup may be.

In Katie’s house, I had my own room in the basement, next to those set aside for the son’s attendants.  He had one for during the week and another for the weekend.  I hardly had any floor space, since there were already two beds in such a small room.  That was okay since I was just there to sleep and to get dressed.  I spent most of my waking hours in the living room which was more comfortable for reading or stretching exercises, though that took away some of the privacy for the family, although I did a watercolor in my room where there was a small table.

The house sat on a hill overlooking Lake Washington in the Mount Baker neighborhood that was relatively racially mixed and near the central area of Seattle.  When I went out jogging, I learned to stay within several blocks from the water going through the lake front parks and the stylish old homes in the area.  Just above the hill, away from the lake, were slum areas.  I felt safe as long as I stayed within the more affluent zone.

 

Since I still had a very hard time of finding any paying job, I applied for the General Public Assistance for the unemployable (GPAU) at the Department of Social and Health Services (DSHS) and the Supplemental Security Income (SSI) at the Social Security Administration (SSA).  In both places, I filled out forms in stacks of paper and brought in a note from the doctor stating my disability along with a note of my housing arrangements.  I received public assistance from the state that included a little bit of money for rent, a small allowance, food stamps, and Medicaid coupons for health care.  But, I was turned down for SSI that apparently had tighter eligibility.  With SSI, I wouldn’t need to reapply every three months as I did for the state program.  I appealed for the federal aid but received no change in the decision.