Autism : From the Inside – Chapter Two

But I must go back a little further.

Neil and I met at a wedding in Durban, connected instantly and, as I lived 1,000 miles away in Cape Town, courted by letter and telephone call. It seems hard to imagine today, I’m sure, with all the advances in technology that have taken place over the past twenty years, but it worked for us. We met in April, were engaged by July, living together by September and married the next January. Already in our thirties, there didn’t seem any point hanging around and besides, it was most definitely meant to be. Our first son, Rory, was born just over a year later.

Rory was a very ‘finished’ baby. He never really looked newborn. He had golden skin, black hair and black eyes that observed the world from the very first moment they opened. I came from a family of fair-skinned, blonde, blue-eyed people and I somehow imagined that my child would look the same. He was like a changeling to me. After that difficult birth, it took me three months to bond with him. To this day I remember the exact moment:  a 2am feed, lying in the near-darkness with this solid lump in my arms, looking at his round cheeks and rosebud mouth, and suddenly feeling overwhelmed with love for him.

When Ian arrived Rory was 18 months old, and he was delighted with his sibling. However, for us, those were the easy days. As he grew, Rory became more and more difficult, and as he approached the ‘terrible twos’ his tantrums grew into the stuff of legend. He could be heard screaming from one end of the shopping centre to the other. And he couldn’t be reasoned with, distracted, cajoled, or loved out of it. When he went over the edge, he was in freefall.

It is extremely difficult to maintain a loving relationship with a spouse in the face of that. As the sparks flew off Rory, it was hard for Neil and I not to be infected by his anger. Sometimes we just sat holding hands, too exhausted to speak. I remember wondering what on earth I had done in a past life to deserve this. Rory destroyed everything in his path, found it impossible to sit still even for a mere moment, fiddled with everything he could reach, and he hit, bit, toe-walked, and screamed.

Throughout this difficult time, the person who understood best was my mother-in-law, Rory’s gran. Her first son – Neil’s older brother – had been the same as a young boy, and sharing ‘war stories’ with someone who truly understood was a great help to me. But it wasn’t enough.

Finally, when Rory was two and a half, I went to a paediatrician, sat exhausted opposite him, and said those few words I never imagined would come from my mouth : “Help me. I can’t cope with this child.”

He sat back in his chair and watched Rory fiddling his way around the room.  

“Have you heard of ADHD?” he asked me.  

Yes, I had.  

“Well, your son has it,” he said.  

“Okay. What do I do?”

“Medicate,” he replied.  

“Goodbye,” I said. And I grabbed Rory’s hand and walked out.

A week of hell later, I was back with Neil.

“Talk to us,” I said.  

This gentle doctor then said words to me I have never forgotten and that became the mantra by which we lived from that moment on.

Life lesson number one: “We need being happy to become Rory’s life habit.

It made absolute sense. His life habit. How perfect.  

So we medicated, and within a week our lives changed. It sounds so melodramatic today, but it was true. Within that first week, I heard Rory laugh – something I hadn’t heard since he was a tiny baby – and by the end of that week we were beginning to understand what he was saying. Before the medication, Rory’s brain had been going so fast and his thoughts were so scrambled he couldn’t form coherent speech. On medication, the gibberish became words.  

At last! He slept. He laughed. He learned to communicate.

Several years later I learned that the Melleril Rory had been on was no longer available for children with ADHD – certainly in South Africa – and this made me very sad. All those angry children who could have benefitted the way Rory did; all those parents whose lives could have been improved by making happy their child’s life habit… It seemed wrong to me. Oh, I am sure there were good reasons for its withdrawal and I hope something just as effective has taken its place, but it changed our lives and I felt bad for parents whose lives weren’t being helped the way ours had been. Rory was on Melleril for four years. A tiny dose, just a teaspoon in the morning and again at night. After a year and a half, I stopped giving it to him in the morning, and towards the end of four years, as the final bottle emptied, I decided to try life without. It was a success. Rory no longer needed it at all.   Happiness had become his life habit.

It wasn’t all plain sailing, of course. It never is. There was speech therapy, which Rory enjoyed, but when he was three and a half it was recommended to us by the pre-school Rory attended that he be psychologically assessed. Well, they weren’t particularly friendly about it; it was that or expulsion. So Rory attended a centre for special needs children for a proposed two-week period for assessment. It didn’t go well. He hated it there, cried when I took him and resisted going in, and before the end of the first week I knew things were going very wrong.

Life lesson number two: Surrounded by other special needs kids, my child was imitating the disturbed behaviour of other disturbed children.

I pulled him out.

The centre wanted Rory there, full time. They were quite insistent about it. I said no, and Neil agreed. We weren’t prepared to write Rory off so easily.   

Soon after that, we attended a School Expo where we wandered around, vaguely wondering what the future might possibly hold for our challenging firstborn, when I saw a stand for Roseway School (a school which followed the philosophy of Rudolph Steiner – the same as Michael Hall, the school of my own childhood). If we were looking for something different for our son, this might just be it.

Rory went to Roseway for three and a half years, from the age of four until he was almost eight, and he blossomed. There, he was accepted as the creative, determined, otherworldly child he truly was. I remember his very first day there – Rory was in tears at having to leave me, and his new teacher took him in her arms and hugged him tightly, looking at me over his head.  

“I sense a softness here,” she said in her gentle German accent, and I knew he was in the right place.

My two boys.

Rory tried valiantly to engage Ian and play with him; Ian ignored Rory completely. It was hard to watch. There was only eighteen months between them, but in many ways, Rory grew up as an only child. Ian was there but not there, an entirely self-contained unit that neither needed nor wanted the company of anyone else. They did play together sometimes, but it was more a case of parallel play, doing the same thing at the same time in approximately the same place.

When Ian’s therapy programme started, our lives revolved around that and we knew Rory felt left out. We worked hard to include him in other things. When he was home from school, and while Ian was busy with his tutors and before Neil came home from work, Rory and I baked together, and drew pictures, and made puzzles, and played with Lego and swam together in the paddling pool. To our enduring joy, Rory laughed a lot and seemed content.

Thinking now about the rest of the family, I wonder about the effect of Ian’s diagnosis on them. There was no wailing or gnashing of teeth. There were actually very few questions.  Ian was Ian, and he was accepted and loved just as he was. Perhaps there was a quiet sadness behind the scenes, but it was probably always assumed that I had the loving support I needed and that I would cope.

Yes, and (mostly) yes … although I suspect that women who cope well cry a lot in private. I know I did.

Addendum to this chapter :

It may be a relief to some of you to learn that Rory has grown up into a wonderful, even-tempered, beautiful young man. Those difficult early days are now very, very far behind us. 😊

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