RAISING A CHILD WITH AUTISM: A MOTHER’S EXPERIENCE

In late August, following the news story of a UK mother advertising to hire a friend for her young son with autism, Geraldine Graydon of Dublin spoke candidly with RTE’s Brenda Power.

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Andrew, our fifth child, was born on 5 October 1989. Like all new mothers, I was very relieved that he was okay. For the first two years, he achieved all the usual milestones—sitting up, crawling, walking etc. He was, however, a very colicky baby and cried more than his sisters and brother had, and he was late to develop language. He had four or five words at 18 months, but because he was the youngest of five children, the age gap between the oldest and him was twenty years, and the fact that he was a boy—and boys are sometimes slower that girls—I was not too worried about his delay in developing language.

Little did I know what was ahead. When I took Andrew for his two-year developmental check, I asked the doctor if it was usual for a child to be so late developing language—at this stage he had lost even those few words. Andrew was sent for an assessment by a speech and language therapist. And he received therapy once a week for 20 to 40 minutes, depending on his behaviour.

For Andrew, the terrible twos turned into the terrible threes; he became very hyperactive, he had up to six temper tantrums a day, he would scream, throw things, he was always running around opening and closing doors, turning lights on and off and climbing. He was frightened of loud noises and his eye contact was very poor. He also began to change physically—his left eye became smaller, he dragged his right foot, and held his right arm in one position and kept his hand in a closed fist. After a really terrible day, when he completely demolished his bedroom by throwing everything but his bed down the stairs, I know that I had to do something. This child was out of control, yet he controlled our whole lives so that we were becoming prisoners in our home.

So began the start of a very long journey which has changed my life and that of my family. Andrew was sent from our local clinic to a language unit in another Dublin clinic, but six months later we were told that the unit was not suitable for him. On the day we were told he would have to leave, I asked the psychologist what was wrong with our son. She told us she was unable to say, because he was a very ‘unusual’ child. I asked for a second option, but we was told that was not possible. I was very disillusioned with the unit and with the professionals who did not appear to know what was wrong with Andrew. We had no option but to seek help and advice via the private route.

I call this period ‘the merry-go-round—we went from professional to professional seeking answers to our many questions. One doctor told us that Andrew was gifted; another said that he would need special education. We were sent back to the health board to a child psychiatrist. After observing Andrew, she said, ‘Your son is autistic. And how do you feel about that?’ What I felt was that I wanted to do was pick up my child and run—to this day I can’t remember driving home from that appointment.

At that time, all I knew about autism then was from the film Rainman, and Andrew was nothing like that. I eventually found a book on autism in Hanna’s academic bookshop in Dublin. The more I read, the more frightened I became. The book’s description of autism did not fit my child. I threw the book in the bin. I wanted to protect the rest of the family from this terrible news; I didn’t tell my husband or the other children for some time. I just hoped the nightmare would go away. I kept thinking what had I done to deserve this? I cried a lot. Trying to live a normal life at this time was just impossible.

I got Andrew into a play school, but after four days I was asked to take him out because he was so disruptive. He screamed at the other children, and at home he screamed at us. I remember going into his bedroom one night—he looked so peaceful in his sleep, like a little angel; I felt so sorry for him it almost broke my heart and I wondered what would become of him if we did not get the proper help. I knew Andrew could speak, because he repeated the alphabet and he could sing songs. But instead of asking for things, he would bring me by the hand. If I got it wrong he would throw a tantrum. Sometimes I really hated my child, but at the same time I longed to hear him call me Mammy. I thought at one stage that maybe he was not hearing correctly—not that he couldn’t hear, because he could sing songs and the jingles of the television.

One day on our way to the language unit, from the back seat Andrew said, ‘There’s rabbit.’ I couldn’t see a rabbit anywhere. Then, on the back of the bus in front of us, I saw a poster which read ‘Vote Pat Rabbitte’. I nearly crashed the car. I thought this was the breakthrough, now everything would be all right. But Andrew did not go on to develop language in the same way as other children. He continued to read but not to speak. His decoding ability was unbelievable, but his ability to comprehend was very poor. I was later to discover on the Internet that this ability was called ‘hyperlexia’, and that it can be part of the autistic spectrum.

Being a parent of a disabled child is very hard, but being a parent of a child with a hidden disability like autism is even harder. I even envied parents whose child had a serious heart problem or cancer—children with a chance of being cured. I felt robbed of the child I thought I had, and left with this child that I did not want.

In the summer of ’94 I took Andrew to London for audio integration training. Between sessions, we walked the city streets. On the second day I found a park near the clinic. My older son started kicking his football and Andrew went chasing pigeons. I sat down on the park bench, exhausted. I watched Andrew head for the gate that led onto a very busy road. I found myself thinking that if he went onto the road, was knocked down and killed, the nightmare would be over- I was at a really low ebb; I’d never felt so isolated in all my life. But I soon came to my senses. I remember thinking, ‘Stop this, get up and get that child, it is not his fault you are feeling this way, you have been let down by the very people you thought where going to help you. The system in Ireland is to blame and it’s about time you started to fight back.’ I had just ‘hit the wall’. I came out fighting that day, and I don’t think I have stopped since!

Andrew went into mainstream school in September 1994. He lasted only ten weeks. I took him out of the school and started to work with him at home. Through another parent I heard of a special school in Dublin that might suit him. It broke my heart to send him to a special school; I really felt that I had failed, but now I know I did the right thing—I had started to put Andrew’s needs before mine. I will always be grateful to the school principal; she was the first person in the six years who understood my son the way I did. Andrew got assessed under the TEACCH programme and for the first time the school’s profile of my child matched the profile I had. His teacher developed a very good understanding of autism, implemented a language programme in collaboration with the speech and language therapist and always included parents—we had a very good home school partnership. Andrew was with that teacher until last year. His new teacher is equally good, and he is doing extremely well. I know only too well that without the right teachers he will regress—another frightening aspect of autism.

I have attended conferences and workshops and I’ve done a course on autism; I have researched and visited services for people with autism in other countries—in the USA, Canada and England. The more I’ve learned about how autism affects a person, the more I have come to appreciate the hidden person in my son. Andrew has shown me what unconditional love means, and pushed me further than I would ever have gone on my own. He has given me an opportunity to discover the depth of my character, my love, my commitment and my patience.

One of the hardest things to bear is that Andrew has no friends. H has never even been asked to a birthday party. His brother was teased by other children on the road. I know that when other parents saw his bad behaviour, they thought Andrew was a very bold child and that I was not a good parent. I hope that in the future people will be a little more understanding and willing to help and support families in our situation.

While things are changing for children with autism in this country, we have a very long way to go. Andrew will be an adult longer than he is a child, but from the age of eighteen, he will be entitled to nothing. There are very few services available and, with the pending cutbacks, this vulnerable population will be hit even harder. I do not believe that the government or the service providers in this country have the political will or the mindset to change their thinking regarding children and adults with autism, in order to provide the necessary services they and their families need so badly. Sadly, parents will have to continue fighting through the courts for their children to be treated equally. Children with autism must have access to all the supports they need. They have no chance of reaching their potential if the people working with them lack the necessary knowledge and understanding of autism.

What is the price of a dream not dreamed?
What is the price of a word not spoken?
What is the price of voice not heard?
What is the price of a vision not imagined?
What is the price of a life not lived?