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Life with Down's Syndrome

Glenn Vatter
Billy. A Family's Experience with Multiply Disabled Child.
Chapter 2, p. 9-19.
  Reprinted with the permission of the author.
Copyright © 1997 by Glenn Vatter

     After the initial shock of learning about Billy's handicap we settled back into the family routines with relatively little impact. Dottie always took him with her to the supermarket and all her other daily routines. He rode in the food cart at the supermarket until he was old enough to walk, and then walked along as she shopped. As a baby, his condition was recognized by only a sparse few people who were familiar with Down's Syndrome, usually because they or a friend or relative had a Down's child or because they worked in the Special Education field. To most people he was just another cute little baby.

     Shortly after Billy was born we heard about and joined the local Down's Syndrome Society. Dottie became active with other parents in organizing meetings and securing speakers. One of these speakers was a lawyer who explained some of the legal intricacies of parenting a disabled child. This centered mainly around not leaving him any funds in the will. If he eventually comes under the care of the State it can seize his assets. We later learned of a Special Needs trust to cover this. The Special Needs trust holds funds for the child only for special needs such as a musical instrument, a vacation, or whatever other items are not provided by the State as ordinary living needs.

     Dottie volunteered as a telephone contact to counsel new parents of Down's children. This was not always a happy job. There is a high incidence of marital problems amongst new parents of Down's children. Sometimes one parent accepts the child and the other doesn't. Both parents ask "What did I do wrong?". Or even worse, "What did my spouse do wrong?". Some parents refuse to pick up and coddle the baby, or even live in the same house. This of course is all based on total ignorance and Dottie's job was to help get the parents going together on the same track.

     At about 5 weeks and until he was 2 years old Billy was in an early intervention program under the tutelage of Peg, a lovely woman who had raised a Down's boy when there were no services available. Peg was a pioneer in battling the system to get her boy the educational and other services theretofore not available. Some new and revolutionary thinking when Billy was born was that Down's people develop mentally at nearly the same rate as normal people until age four and then mysteriously slow to a much slower pace or stop. With this in mind, early intervention programs were designed to stimulate development as much as possible so the person is as far ahead as possible when the age four wall is hit.

     Peg would place brightly colored objects with patterns in front of Billy to get and hold his attention. She would then move them around slowly to cause him to follow the movement with his eyes.

     Peg worked on Billy's posture, getting him to sit up straight, push against things, do resistance exercises to strengthen his muscles. With his low muscle tone, Billy would tend to flop sideways when sitting in his high chair at mealtimes. So I fashioned an insert, like a little chair, with sides going up to his armpits so he had to sit straight. This went inside the high chair. I made it in my workshop out of oak plywood and finished it to match the highchair. It was really pretty neat and it worked. We later gave it to another family when we were through with it.

     Peg used a board with many different textures on it. This gave Billy a feel of the different textures. She also brought toys that were appropriate . She made up picture books with lots of brightly colored pictures to look at . She stood him in front of a mirror so he could see himself. She put him belly down on a great big ball to help with the balance skills.

     Peg instructed Dottie in all of these therapies so we could continue them when she wasn't present. Tests given Billy at 18 ½ months proved the effectiveness of the therapy as he was not too far behind the mental norms at that time:

Skill     Testing Age     Equivalent Age
Mental Scale
Motor Scale
Social Scale
Receptive Scale
Expressive Scale
18.5 Months
18.5 Months
18.5 Months
18.5 Months
18.5 Months
14.3 Months
9.7 Months
Not measured
10.0 Months
7.0 Months

     At age 2 and until age 5 Billy attended the Parkside School, which was a part of the State Developmental Center. He went to Parkside twice weekly for two hours, while Peg continued to see him at home. Therapy goals during this time focused on Cognitive, Coordination, Locomotion, Speech and Language, and Self Help. Cognitive goals centered on completion of small puzzles, using cubes to make a train or a bridge, and picking out toys or clothing items from two or three in front of him. Coordination goals were to turn door knobs, lids, etc., unwrap small objects, fold paper in half, string large beads. Locomotion goals centered on walking, balancing, bracing when off balance. Speech and language goals were to recognize body parts, imitate some sounds, respond to action verbs like "sit", "stand", spontaneously produce some words. Self help goals centered on actively participating in dressing and undressing, independent grooming, and toilet training. Billy's progress at age 30 months was as follows:

Skill     Testing Age     Equivalent Age
Mental Scale
Motor Scale
Social Scale
Receptive Scale
Expressive Scale
30 Months
30 Months
30 Months
30 Months
18.8 Months
20.6 Months
14 Months
12 Months

     You can see some slipping occurring in Billy's development by comparing the charts at 18 and 30 months. At 18 months he was running 4-10 months behind normal and at 30 months he was running 9-18 months behind. At 5 years of age Billy scored as moderately retarded with an IQ of 59. At age 6 he was running up to 3 years behind normal in the speech categories. Some of this may have been due to a medical problem in which much trauma occurred, including periods of no oxygen which could have caused additional brain damage. This is detailed in chapter 4.

     At 6 years Billy became the responsibility of our local school district because of his age. He was deemed ready for school in a special education environment with teacher-pupil ratio of up to 1:7. Billy has been in a similar environment ever since and has been sent to three different schools.

     The first school was a program run by BOCES using a school building which belonged to the Fayetteville-Manlius school district but had some unused space. This lasted only one year because the school district needed the school for themselves the next year. This left Billy without a school. The BOCES program which was funding the class had the money and the staff to continue but not the appropriate real estate. I found some possible places for them, including a former school building owned by a friend, but the rules were that the class must meet in a normal school setting where there were normal classes. I always thought that was pretty silly because this was a self contained class and none of the handicapped kids ever went to included classes with the normal kids. Knowing about some very fine programs in Syracuse, I called the head of the Syracuse Special Ed programs and asked if we could get Billy enrolled. Our local district would pay his tuition and busing. He told me no, the city schools were filled up and could not accept children from out in the county. It became apparent that there was an ironic twist to the State law that says your school district must find an appropriate place for a disabled child. The law doesn't say that the appropriate places have to accept him.

     Since the Syracuse school district had a renowned program for developmentally disabled children, the Ed Smith School, we pondered the possibility of selling our home and moving into the city. We chose not to because we didn't particularly want to live in the city or send our other children to the city schools. Besides, Billy wasn't that much of a problem. As I look back now, I have some regrets. The Ed Smith School has a concentration of Autistic children and the most acclaimed program in the area for them. But we had no inkling of Autism in Billy at the time. Had Billy been placed there, his Autism may have been diagnosed and an appropriate educational plan developed. I have recently met parents who have sold their homes and moved into the city to have their autistic child placed in the Ed Smith School. More power to them.

     As it turned out our school district, not having a Special Ed coordinator, hired a woman part time. This woman's main job was as coordinator for another school district and she solved our problem by placing Billy in her district in a Special Ed class. So here went Billy to yet another setting where he could sit in a corner and cry for three months until the teacher figured out how to deal with him. (If someone had recognized Billy's inability to adapt to new situations as a symptom of Autism we may have been able to proceed along a better path).

     At age 8 Billy was sent to his next school, in Cazenovia. His teacher, Lois, was very patient and motherly and worked well with him until he was 10 and went on to the next stop. This was in the same school system but in a different class.

     His teacher in this new class was Becky. Becky went through a couple of years of very trying times with Billy but never gave up and finally got him to bond with her and her assistants to the point where they could work with him quite nicely. Becky is wonderful with Billy and works very closely with the family to compare notes on Billy and exchange ideas. She has two assistants who are equally helpful. We would be lost if Billy were ever to be separated from Becky and her two wonderful assistants.

     In each of the school settings, Billy was given Occupational Therapy, Physical Therapy, Speech and Language Therapy, Adaptive Physical Education, and Non-Categorical Education. The Non-Categorical Education is that administered by his general teacher and assistants. The other therapies are administered by specialists in the field. At times Billy was taken to the regular classes for music and art, accompanied by one of the Special Education teachers.

     When Billy was thirteen, his teachers started taking him outside of the school to job sites. One such site is the local college library, where Billy returns the books to their proper place on the shelves. When students take out books for study, they are requested not to return them to the shelves but to leave them in the study carrels for later pickup. Billy does this pickup by wheeling a cart around and gathering up the books. Then, with his teacher pointing to where each book goes, he returns them to their proper place on the shelves.

     He has also been taken to a local consignment shop for clothing where he sorted clothes according to men/women and size, and then hung them on the racks, under instruction from his teachers, of course. He also goes to a local printing shop where he does collating.

     These are activities needed to prepare Billy for the future. Working all day on the three "R's" and other academic skills may not be all that fruitful. It's senseless to force education on him that is beyond his capabilities. On the other hand, who knows what his potentials are? We feel that Billy's current teaching team is best qualified for these decisions and we trust their judgment explicitly. It is so nice to have Billy in an educational setting that we really appreciate. This is not always the case with parents of disabled children.

     As per State law, the local school district has a Committee on Special Education (CSE) comprised of the parents, teachers, and various school officials. Each year an Individualized Education Plan (IEP) is drawn up for the student and is reviewed by the CSE. Each of the therapists submits a portion of this plan. In each therapy category there are detailed (and I mean detailed!) goals and objectives for the coming year and a review of progress for the past year.

     We have always maintained good relationships with the CSE. Dottie being a teacher in the school system aided tremendously as she knew and stayed on good terms with all involved. This is not always true. Sometimes the parents of a special child will get at loggerheads with the CSE. This is sometimes caused when the parents have higher expectations for the child than does the CSE. We have had no such conflicts.

     One of the CSE members, by State law, is a parent of a disabled child. Dottie was asked at one point to be this person but a check with State officialdom revealed that a teacher in the district cannot fill this role even though she is also a parent.

     Through all those early years we simply accepted things as they came with the schooling, even though we were not always happy with the way Billy was shuffled around. Each such shift entailed long periods of set-back and re-adjustment. However we were not trouble makers and did not complain. We assumed the professionals knew what they were doing.

     Looking back, we wonder how all the education professionals failed to detect the Autism. Billy's inability to integrate into new situations, his reluctance to participate in class activities, his desire for aloneness, and all the other things we now know are indicative of Autism, were simply thought to be part of the Down's Syndrome, even though it is well known that Down's children are friendly and affectionate and tend to be outgoing instead of withdrawn. The Autism wasn't diagnosed until Billy was 12 years old, and then by a State psychologist who is not part of the school system. Had it been diagnosed earlier there may have been some therapy applied to improve him. As a family we were not equipped to recognize the symptoms of Autism. We knew nothing about this condition and simply attributed any oddities to the Down's Syndrome. Becky always felt there was something wrong with Billy besides the Down's but couldn't quite put her finger on it.

     When Billy was fourteen I met a professional who had been in charge of Billy's early intervention program and who had evaluated Billy on the various aptitude tests. She asked about Billy and I told her about the Autism. She then informed me that shortly prior to working with Billy, she had done her PHD dissertation on Autism. But it never occurred to her at the time that he had it! How would it ever occur to anyone that an infant with Down Syndrome also has Autism?

     Billy's Down Syndrome never was a problem as far as family activities or relationships go. He was always with us when we went places, traipsing through museums, stores, the woods, or whatever. The other children's friends always accepted Billy openly. Whenever Jean brought boyfriends home they were not put off by Billy's strangeness. Our house always bustled with kids, ours and their friends. Billy simply joined in.

     One of the things we always have done as a family is camping. We use a big tent, no camper or trailer for us. For Billy, we simply bought a cute sleeping bag with Disney characters on it and brought him along. All six of us slept in the big tent. We did this for several years until first Jean and then Jim outgrew this activity. Then I bought a slightly smaller, lighter tent and Bill, Rob, Dottie and myself continued the tradition.

     Very often our camping was in bear country. This really worried Dottie, especially at night when she walked around in the dark putting one of the children to sleep knowing there were bears roaming around. But by being careful with the food we never had an encounter. Also, my loud snoring surely kept them away. The family all complained about the snoring but if it kept the bears away I am sure it was worth the annoyance.

     Billy always seemed to enjoy the camping. As he grew older he would help set up camp and help with the chores. Gathering firewood was always fun. Once when we were breaking camp I left the campfire smoldering while carrying some things to the car. When I returned the fire was all smoky and upon closer inspection I noticed my hat was in the fire. Billy had decided that the hat had to be burned. Don't leave stuff around after you leave-one lesson he had learned all too well!

     When Billy was ten I was given an early retirement as part of the rash of corporate downsizing going on at the time. This provided an opportunity to realize a lifelong dream: go see Alaska.

     So we packed up the camping gear in the car and Dottie, Rob, Bill, and myself headed out. We traveled west to Michigan from New York, up to Canada, and across Canada on the Trans-Canada highway. We typically would drive about six hours per day, making tourist stops, and then find a campground to set up in. In the 32 days we were gone, we camped 25 nights in 20 different campgrounds, and stayed in motels 7 nights. After about the 15th time putting up the tent, Rob remarked "Geez, Dad, I'm only thirteen and I've already camped more than Lewis and Clark!". What with all of our family camping added to Boy Scout camping he wasn't that far from the truth.

     In Calgary we stopped to tour the facilities from the winter Olympics held there in 1988. Although it was August, they had a portion of the luge run open, all iced up with real ice, sheltered from the sun with an overhead canvas awning. Rob was all aglow at the chance to try it. As we walked from the main building over to the bottom of the luge run, a long walk down endless concrete steps, Billy suddenly started down the steps on a dead run. He had lost his balance and was actually stumbling down the steps but resisted falling and tried to stay on his feet by getting his feet to catch up with the rest of him. Finally he hit a landing and pitched forward, falling on his face. When we caught up with him, expecting a broken limb or concussion, we found that only his face and arm were badly scraped and his glasses were badly scratched. We took him to the car and patched things up from the first aid kit. Rob never got his luge run.

     That night we stopped at a campground near Banff and the temperature went down into the twenties. In August! We bundled Billy up in his sleeping bag with all we could spare over him. He had a lot of trouble sleeping for a couple of nights due to the pain. Sometimes Dottie took him to the car and held him close, bundled up against the cold. In the morning I made a nice campfire and we all warmed ourselves and had a good breakfast. Despite his pain, Billy went along with us on our daily touring without a complaint. He has amazing resiliency.

     We never did make it to Alaska. Between concern over Billy's injury and time starting to run out from our many stops to do touring we never got there. We did go to Lake Louise, Jasper, Edmonton, Dawson Creek, and back on down through British Columbia to Vancouver. From Vancouver we traveled east to Yellowstone and back home to Syracuse through the northern United States. What vast and beautiful countries are Canada and the United States!

     The only real problem we had with Billy on this trip was with the toileting. With all the 2-holer outhouses at many of the campgrounds Billy never really caught on to the concept. We tried to stop in at a Burger King or McDonalds every day so he could have the benefit of a familiar setting but many times he soiled himself before we arrived. This, as you can imagine, made for unpleasant odors in the car. Also, cleaning up the mess in a McDonald's restroom was a tedious task. Yuk!

     Billy has always been a very good traveler. Besides numerous camping trips he has always gone with us to visit Dottie's parents in North Carolina. Dottie's father had a lot of fun with Billy, taking note of his propensity to mimic. Dad would give Billy a salute. Billy would salute back. Whenever we mentioned "Grampa", Billy would salute. Dad had a routine with his hands. Use one hand to control the other. Make it flex, bend, turn. Billy would then imitate these maneuvers.

     By this time Billy was talking some, even reading after a fashion. It was never clear if he was actually reading the words or reciting from memory. Probably the latter since he would sit on our laps for hours and listen intently while we read to him. Sometimes he read along with us. This carried over in our trips to North Carolina where he would do the same with his grandparents. We later reasoned that Billy did so well at the grandparents due to familiar surroundings and people. Although we only saw them two or three times a year, Billy remembered them.

     When Billy was three, we took a trip to Disney World. He wasn't the least put off by the crowds and confusion. He walked right up to people and said "Hi". With Billy about five years old, we traveled to Ohio for Dottie's sister's wedding. Billy had a great time on the dance floor, dancing around and not bothered by the noise and confusion. As detailed in chapter five, most of these desirable attributes of Billy later disappeared.

Revised: January 2, 2000.