That day, after receiving Ian’s diagnosis, I got home and I went through my books. Trying to get a handle on ADHD had led to many trips to the bookshop, and we had plenty of material covering all developmental disorders, including autism. I read and nodded. It all fitted. There was no room for doubt.
When Neil came home from work, I told him the news. He gathered me into one of his wonderful, comforting hugs and we stood holding onto to each other, dry eyed and stunned.
“Okay,” said Neil, taking a deep breath, “what are we going to do about this?”
Such a small word, but it was one that held within it the strength of our marriage, the enormity of our commitment to each other and to our children. This gentle, quiet, strong, loving man said, “What are WE going to do about this?”
We looked at each other.
“Well,” I told him, “the paediatrician has said we should contact The Browns’ School [a school for special needs children in Durban] for a screening test and then, when we have their report, we should see a Psychiatrist at University of Natal, Durban, who will confirm the diagnosis. After that, possibly a Genetics specialist to see if there is any genetic connection, and then, who knows?”
A great big empty hole called The Rest of His Life still had to be faced, and in truth we had no idea how to do that.
* * *
The screening at The Browns’ School was a strange process and the first of many times we would come into contact with good people who meant well but who provided us with absolutely no help at all. It revealed an approach prevalent within the health services which would leave us, time and again, feeling frustrated, alone, and more than a little angry.
We arrived at the school, and our immediate response on getting out of the car was a deeply negative gut reaction –
“Ian is not going to go here.”
It looked austere and forbidding, far too much like an institution, even though the building was new and the windows were large and open. The gardens were well cared for and quite pretty. But there was an unsettling aura about the place, a silence that was watchful rather than peaceful, and we realised then that we were determined to protect our child from anything like this for as long as we possibly could. His whole life if we could manage it.
After a lengthy wait while they co-ordinated the various members of their screening team, we were shown into a large room. There were toys in one corner, and a couple of chairs where Neil and I sat. There were children’s pictures on the wall, too, but the overall impression was drab, probably enhanced by the extensive area of hard-wearing office-type dull brown carpet.
Then the team members arrived and arranged themselves in a semi-circle of five chairs, an impersonal six yards away from us. There was nothing intimate or congenial about this get-together. There was a speech therapist, an educational psychologist, an occupational therapist, a remedial teacher, and the senior school psychologist, all with notepads on their laps and pens in their hands.
Ian wandered around the room exploring. Five professional heads turned to watch him. He admired his reflection in a mirror, and then went through a succession of toys, which he picked up and fiddled with, then chucked because they held no interest for him. With Ian thus occupied, the team asked us questions. I had taken my books to Browns’ with me, the relevant pages marked so I wouldn’t forget anything. I read out certain passages, and Neil and I explained their relevance in terms of Ian’s behaviour. Occasionally Ian came back to me and I played with him to keep him happy, throwing him in the air and lifting him onto my shoulder, a game we had shared many times and which always brought delightful chuckles from him.
We were there for about an hour and then it was time to leave. Ian, now settled in this new place, didn’t want to go and became distressed when we had to insist. Embarrassed but determined, we manoeuvred him out of the building.
Back in the car, Neil and I breathed a huge sigh of relief just to be away from that room. We were both quite shaken by our reactions to the school and sat quietly in the car for a long time, just holding hands.
After the meeting at Browns’, we met with a Psychiatrist who seemed happy to confirm what we already knew, and the next day we met with the genetics specialist who agreed that there didn’t seem to be any physical features which suggested a genetic abnormality. He was happy not to take the matter any further.
Having done the rounds of meetings, that appeared to be that. No one came forward with any bright ideas; no one offered help; no one seemed to know what we should do next. We found ourselves sitting at home staring at that big empty hole called The Rest of Ian’s Life, floundering.
Weeks went by. Nothing changed.
Then I came across Catherine Maurice’s book, Let Me Hear Your Voice, in a nearby bookshop. It was expensive and after a brief glance I had put it back on the shelf. I browsed around the shop, went back to the book, picked it up, and looked at it again. Somehow I knew this was the book we needed. I decided to buy it.
It was only after I had read it from cover to cover that the enormity of what we faced really sank in. Alone in the spare room with the finished book in my hands, the numbness I had been feeling deserted me and I howled silently, tears pouring down my face.
“My son is autistic … my son is autistic … my son is autistic…”
I couldn’t stop the words ricocheting inside my head.
On and on I cried, alone in that room, until my fighting spirit reasserted itself. I may have been wounded but I was not defeated, and the message contained in the book I had just finished was truly inspiring. Here was a woman who had fought the fight, and recorded the process and her thoughts and feelings. It was an amazing book and hugely encouraging. When I emerged from the spare room I said to Neil, “You have to read this. Now.”
He read the book in one sitting, and then we sat down together and discussed how we were going to do what we now knew we had to.
Within the written report from The Browns’ School there had been one sentence, which stood out from the rest of the report. It had been written by the special needs class teacher, and said, “I suspect Ian has the potential to learn.”
This one single sentence was what we clung to, because we believed it absolutely.