The Quest for Autonomy as Told by One Mother
The Quest Begins
My sons quest for autonomy began as an infant. He was a premie of 2 pounds 12 ounces. He was Twin A of an undiagnosed set of twins. His sister's placenta was healthy. James placenta was detached and calcified. Being so small he went undetected. Fortunately, he was born first. He was whisked off to the NICU where he remained for the first 2 and a half months of his life. They gave him a 50/50 chance of living through the night, My husband would go in to visit after working 4-12 and sit with him for hours. We had no one to look after Elizabeth. When James graduated to an incubator his personality and perseverance first evidenced itself, he figured out that he could move his body around the incubator by throwing his head, and learned his body would follow. He would occasionally paste his body up to the side of the incubator which he would l seemingly find amusing as he would smile and gurgle at the nurses when they came to see what he was up to. At 2 and a half months we were able to take him home.As the months passed we realized there were significant delays and he was an epileptic. The neurologist suggested an early intervention program. After the initial evaluation they said he would probably never walk or talk. When I was pregnant I read the book "Karen" which is about Karen Killilea who had oxygen deprivation which resulted in cerebral palsy. This book promoted the idea of maximizing strengths by providing a rich and stimulating environment . This would be our prime directive.
The early intervention program included speech therapy, physical therapy, and occupational therapy. I found out early on in this quest that all therapists think that their area of expertise is the most important. My husband and I learned a lot. The most important was that there needed to be flexibility and balance. I remember a physical therapist telling me I had to spend at least an hour a day teaching James the correct way to sit. The muscles need to be stretched a certain way. These specific exercises frustrated him, and he would scream. The therapist told me if he did not do these exercises he would never walk. I continued to massage his legs and do stretching exercises. By the time his twin was nine months old, she was walking and running. James wanted to be up there too but was only still able to ambulate by using his elbows.
At about a year James lay on his stomach in the playpen and started pulling himself up hand over hand until he was standing. He flung himself around so was standing there, then fell flat like a felled tree. He found amusing and kept pulling himself up, throwing himself around, and one day pushed off and goose-stepped to the other side of the playpen. Then one day he was pulling himself by his elbows across the floor and reaching the curtains and pulled himself up hand over hand much to his delight and placed himself up against the wall and then pushed off and goose-stepped across the room till he crashed into the toybox. I began just placing him on his feet, and he would go the momentum compensating for balance. We put him in a walker, and he would go backward. We bought a Little Tykes car, and he learned to go back real speedily and then one day he decided to move forward. With all the massage and stretching he kept moving and never did learn to sit correctly. He was able to compensate and figure out what worked for him. There have been many physical therapists who have helped over the years. His own sheer will and determination was the deciding factor in mobility as well as other areas.
The Early intervention Pre-School decided to teach sign language, it was easier for James than speaking. With all the effort we put in for speech he seemed to lose what he had gained in an instant. When James and Elizabeth were three their sister, Rose was born. When she was a week, old James started attending the United Cerebral Palsy Pre-school in Brooklyn NY. He attended there for two years. Then he became eligible for the New York City public school system. The evaluation at that time was appalling. They said t he was profoundly mentally disabled and nonverbal. I said to the woman you just don't understand what he was saying. She told me I was just deluding myself. We moved on. On to a Montessori school where everything was hands on. The educational environment was vibrant and involving, but unfortunately, we had to seek out all therapies elsewhere. We tried to provide a varied and free learning environment at home with reading, art, and pets.That became quite a challenge. My father died quite unexpectedly within the next year, and we found ourselves having to move. We found an affordable home in Up State New York. I called the school James would attend, and I was told about "mainstreaming" and "the least restrictive environment". Therapies would be provided while James attended regular classes with his peers to the best of his abilities. It sounded like a perfect opportunity. Services were provided throughout the summer and James also attended the Summer Rec program provided. He joined 4H and had chickens and many other pets. Unfortunately, prejudices run deep. We learned the value of advocacy through ARC and United Cerebral Palsy and Legal Aide. I was amazed that there were teachers who told us "a child like this should not be in public school" . James was always cheerful and outgoing. For the most part, the teachers and students were supportive. Unfortunately, though legal aide was required to make sure his civil and educational rights were met. We had several CSE meetings that lasted many hours. Our family was close. His sisters looked out for him in school as well.
Many of James hopes and dreams slowly became realized as he progressed into adulthood. Attending GED classes he has progressed to high school level. He has sung Karaoke and participated in many local talent shows. He is an anime fan and an avid gamer. He loves . is a wrestling fan and has attended events.He has played basketball in the Special Olympics. He has many good friends in the community. His love of performing was showcased when he helped produce and performed in a music video for ARC.
Two years ago he moved out of a supported apartment to his own apartment and was awarded the "Lifetime Acheivment Award" by ARC . He has had his heart broken and has found love. When I asked him "Is there anything else you want to do?" He said to me, "Mom all I want is to live my life, like everyone else."
I wish there was room enough to thank everyone who has been a part of his life and promoted the best in him. You know who you are. Blessings and love to you always.
- Respect Our Rights - YouTube
The Arc Otsego, a chapter of NYSARC, Inc. has produced a music video to illustrate the rights that we all have as American citizens. It is meant to be both e...
© 2019 Edna Straney