Testimoninal: "Reaching Gregory."

 

by Kathryn Morris

July 1998

For many people, autism is a word surrounded by myths and misconceptions. In 1943, when American psychiatrist Leo Kanner first used the term "early infantile autism" to describe the disorder, mothers were told that their cold, refrigerator-type personalities had "caused'' their children to become autistic. These mothers were forced to undergo psychotherapy in an attempt to reverse their child's condition. I can only imagine what those women went through, how they suffered, the enormous amount of guilt and despair they must have experienced from such an accusation, as their children were taken from them and placed in institutions. Misinformation about autism can be more harmful and frightening than the reality.

Today, we know that autism is the result of an abnormality in the structure and function of the brain. (Siegel, Bryna. The World of the Autistic Child, Page 11) The cause of autism is not known, but we do know that the damage is done before the child is born. Autism is basically a sensory Integration disorder, affecting an individual's ability to interact with the world around. People with autism vary greatly in their intelligence, their response to sensation, and their communication skills. (Hart, Charles, A Parent's Guide to Autism, pg 11) At one end of the spectrum, people with autism are earning university degrees and driving cars, while at the other extreme, a person with autism may be unable to communicate with words, act violently and even self-mutilate. Early diagnosis, education and social tolerance are powerful influences on a child's chances for the future.

I have a son with autism. We received an official diagnosis in March of 1996. Getting that official diagnosis was a long and difficult process. just after Gregory turned 2, 1 took him to see a doctor, concerned that something was wrong. He still wasn't speaking, and he'd spent the entire summer wearing socks on his hands. He wouldn't look at us when we called his name, and at times it seemed as though he was deaf. Yet this same child could hear the freezer door being opened from the second floor of the house and would come running, hoping to get some ice-cream. A woman I met who worked with handicapped children said she thought Gregory was autistic. I thought she was crazy. in my mind, autistic children sat in the corner of a room rocking back and forth. They didn't sing songs, paint, laugh when tickled, or love to be held. The doctor I went to had the same misconceptions I did. He reassured me there was nothing wrong with Gregory. "Children learn at different rates," he said. "Take away his soother." Ignoring the sick feeling in the pit of my stomach, I went away, and for the next nine months I chose to believe the doctor.

Nine months later, when my husband and I got on the Internet, my sister, who is an Occupational Therapist working with special needs children, suggested I look up something called P.D.D. (Pervasive Developmental Disorders). I did as she suggested, and there found a profile of an autistic boy. Reading that article, I began to cry, because this was Gregory, my son, and I knew, absolutely, what was wrong with him. Ah, I thought. This is what it means to have your heart break. Gregory is autistic. I said it out loud, amazed, shocked. Gregory is autistic. Again, and again. To me, it meant that the child I thought he was, or could be, had died. It sounds trite, but all those funny little scenarios parents imagine for their children, like graduation or marriage, well, I couldn't project Gregory into the future anymore. All of a sudden, I realized it was possible that my son would never converse with me, not even to argue about going to a friend's house, or having the keys to the car. I might never, ever know what's going on inside of his head. He was the boy in the bubble. Unreachable.

But at least I could label what was special about him. What I wasn't prepared for, was the empty space out there, the lack of resources and knowledgeable professionals who could assist me in helping my son. There didn't seem to be anything. When I tried to make an appointment with the psychiatric division of the Montreal Children's Hospital, I was told that Gregory would have to be "screened'' by a pediatrician first. Three months later, when we finally had our appointment, again, the pediatrician tried to dismiss my concerns about autism, insisting that Gregory be put on a 6 month waiting list to get his hearing checked. It didn't seem real. I left the office feeling frustrated, doubting my own sanity and powers of observation. But despite my self-doubt and complete lack of support, over the next two months I busied myself collecting all the information I could. I was on the Internet every night, talking with other parents of autistic children and professionals. I knew the importance of early diagnosis and intervention, and that every passing day was sinking Gregory further and further into his handicap. Then, a dim light appeared at the end of the seemingly endless tunnel, when man from Toronto suggested I call Peter Zwack, a man he knew of in Montreal, who was somehow connected to autism.

I called Peter Zwack at his place of work and said, "You don't know me but I got your number from Steve somebody on the Internet and he said you would help me." Already I was, learning about myself, about the strength Inside of me, courage, persistence. Mr. Zwack (who turned out to be the President of the Autistic Society of Quebec), gave me the phone number of Dr. Zelazo, a clinical psychologist at the Montreal Children's Hospital. Dr. Zelazo was doing an experimental, parent-implemented therapy for children with autism. Two months later Gregory and I met with Dr. Zelazo and began the program.

Dr. Zelazo was full of hope for Gregory. He tested Gregory using both conventional IQ tests and Information Processing Procedures (IPP) unique to his Department. He concluded that although Gregory did miserably on conventional testing (which requires productive language for success), his performance on the information processing procedures showed Gregory was of normal intelligence, capable of learning. Dr. Zelazo was like a life-raft. I clung to him in my absolute despair, to his calm, straightforward, no-nonsense manner and managed, somehow, to stay above the waves and see that life had not ended. Now I was being given something to do. Dr. Zelazo was going to train me to teach my son to talk. Me. I was to become instrumental in helping my son.

The therapy consists of 12-minute sessions, 5 days a week, in which Gregory and I work across the table, using food to reward speech. It may not seem like much, but combine that with preparation and consistency over time, and it amounts to a large commitment. When Gregory was initially tested in October, 1996, he revealed moderate to severe autism. His vocabulary consisted of 18 words, which he used inconsistenly and we weren't even sure if he knew the meaning of these utterances. Compare that to 13 months later, in December of 1997, when Gregory had a vocabulary of over 250 productive words, and had begun to string 2 and 3 words together. Not only that, but on conventional testing, Gregory had gained 17 months in mental age over the 13 months between testings, showing that he functioned at a better than normal rate of development, confirming Dr. Zelazo's initial statement that Gregory is of normal intelligence!

Since May of 1997, Gregory has been going to a "normal" daycare accompanied by an assistant who helps Gregory adapt. Funding for this program has been difficult to obtain. Initially we received a grant for the summer of '97 from the Autistic Society. They introduced us to a trained educator who took Gregory to daycare 2 days a week. It was rough at first. Gregory threw intense temper-tantrums, the sound of which reverberated through the hills surrounding the town, deafening, I'm sure, half the population! I can only imagine how the people at the daycare felt, listening to Gregory shriek. It was the first time they had ever had a child with autism in their midst, and Gregory was quite the trail-blazer! But they didn't throw him out. They kept him. They let him learn. They accepted him for his differences and for his difficulties.

In the autumn, after much advocating on my part, the CLSC was able to bend some bureaucratic rules and allotted us a weekly sum to help pay for an assistant to accompany Gregory to the daycare. He was going every morning, but the CLSC was only covering 11 hours a week at minimum wage. Such a salary would never attract anyone with the qualifications required for this job! My parents helped out as much as they could, but our family was going broke. When my social worker from Flores found this out, she pushed hard for us and for the first time ever, their centre found a way to provide us with more money. But even though we finally had Gregory established in the daycare, every 3 months both contracts had to be renewed, and we never knew if the funding would continue. It was very stressful, especially after all the work everyone had done.

I must stress at this point, that the financial assistance we have received in order to include Gregory in a daycare with his peers, is not readily available. Ours is, unfortunately, an isolated case. I still don't know how we've managed to get anything under the current system. All I know is that renewing the grants and making sure the cheques arrive, has been a full-time job. There are always screwups and weird, bureaucratic regulations that don't meet Gregory's needs and defy all intelligent rationalization. On top of the stress and pain of living with an autistic child, I have had to fight and fight and fight, an endless battle, which believe me, is never done. It would not be possible in the current system to do what I've done and even think about having a job.

All I have ever wanted for my son is for him to be included, because when he Is not, when he is set apart and left out because of his handicap, my whole family suffers. To isolate Gregory is to isolate our family, each one of us. And unless you have ever been stigmatized with a child who doesn't "fit in", you will never know the agony of this. When Gregory started at the daycare, we were unable to take him anywhere. Restaurants were a nightmare. When we went to the Santa Claus Village he caused such a disturbance chasing the turkeys my daughter wanted to leave him there. He was excluded from our church gospel concert because of his excessive yelling and unpredictability. At Christmas time Gregory threw a temper-tantrum downtown Montreal which attracted such a large group of people, the police came. People thought I was killing him, when all I was trying to do was get away from the water fountain to go back to our car before the meter expired.

Dr. Zelazo gave me the tools to work with Gregory. I have shared that knowledge to the best of my ability with the educators who have worked with Gregory. The daycare welcomed Gregory into their rooms and furthered him along, socializing him. "Expect nothing less from Gregory," the wise Dr. Zelazo instructed me, "than what you would expect from a normally-developing child." Such simple words and such a world of difference. When your child is labelled "handicapped", "mentally retarded", "autistic", whatever, it's much easier to keep him away from others, where he won't be disruptive, where it won't be so much work, where you don't have to face the discomfort of disapproving looks, where you don't have to feel like such a "bad" mother. But the thought of sticking Gregory in a special school where he would spend 3 hours on the bus every day, seemed horrible to me. It was important that Gregory stay with us, his family, and grow up in his community. He was born in my heart, and there he belongs. He belongs. Dr. Zelazo told me Gregory was of normal intelligence. He told me Gregory was capable of learning. He focussed on what he believed Gregory could do. He believed Gregory could function quite well in our society.

When I went to the daycare yesterday to speak with the Director and Gregory's teacher, they told me how much Gregory has changed over the year. They reported that Gregory's temper tantrums have drastically reduced, his attention span has increased, he can wait in line, sit with others for activities, and he asks for what he wants with words instead of shrieks. But above all that, he has a friend. Her name is Sophie and she takes him by the hand. "The children are very protective of Gregory," the director told me. "When they get a chance to help him, it boosts their self-esteem." Those children are lucky. They're learning about tolerance, and unlike so many of us who grew up in a very different time, their fears of individual differences will be lessened. "Gregory's a sweet kid," the daycare teacher said. And that's the point, isn't it? Looking beyond the label of autism, we can get to know the individual, the "sweet kid" whose name is Gregory.

Outside the daycare, Gregory is also doing much better. He can go to church again, because he's learned to sit quietly and he can follow the routine. I take him on short outings and some restaurants are okay. He still has fits from time to time, and he still has autistic behaviours, but he's changed dramatically and every day he surprises us with something new that he's learned. His language development is starting to "snowball." At breakfast today, my 6 year old daughter said she thinks Gregory should come to Canada's Wonderland with us on our vacation. We were planning to leave him and the baby with my parents. "He's ready to go," my daughter said. "I think he'll like it. I think he'll do okay." Oh, if we could all have the faith of my daughter!

In September, Gregory will start regular Kindergarten at the Morin Heights Elementary School, with a full-time educational assistant. It is my current belief that if Gregory continues to advance as he has been doing, he will eventually outgrow the need for specialized care. At any rate, I can project Gregory into the future again. On my refrigerator, hangs his first graduation diploma, from the Pre-K program. I see him learning and growing, and each day brings me closer to his unique personality through his developing language. I attribute Gregory's continuing success with language and social development specifically to Dr. Zelazo's program at the Montreal Children's Hospital and to the daycare, where Gregory was able to put into practice the skills he learned through the 12-minute sessions and got the chance to socialize with normally developing children.