Autism : From the Inside – Chapter Eight

With the help and dedication of this incredible team, we managed to keep our programme going for two years before our neighbourhood changed and we decided to move house.

The school Rory was attending was quite far away, and the journey there and back again, morning and afternoon, was putting a lot of strain on me. New neighbours and several loud all-night parties convinced us that our lovely quiet neighbourhood was a thing of the past, and we didn’t really want to live there any longer.  

Then our next-door neighbour asked his gardener to cut back the huge bougainvillea hedge between our properties and, unsupervised, the man cut a vast hole right through the centre. I was livid. Not only was our security compromised with a clear view down their driveway to the street, but Ian now had a perfect bolthole to get through when he next wanted to go walkabout. I pointedly patched the hole with a large ugly cardboard box, and that night I told Neil we were moving house. Tomorrow!

We were lucky enough to find a perfect house in Kloof, halfway between the old house and Rory’s school, and still conveniently placed for Neil to get to work. We moved in during May 2000, and were extremely happy there. We had a large garden, a swimming pool and a spacious house, all fully enclosed and safe. 

However, Ruth took one look around our new home, and said, “You do realise that you now have the perfect environment for Ian to be autistic.” 

I didn’t understand what she meant at the time, but afterwards I wandered around the house and grounds and realised that she was right. Ian had as much space as he wanted to get away from us, to do his own thing. A child that safe could be supervised less, and therefore be as autistic as he wanted more often – which was exactly the opposite of what we had been trying to achieve.

After the move, the team slowly began to fall apart. The journey was a lot for the therapists and although we could still pay them for their sessions with Ian and contribute towards their petrol, we couldn’t pay them for their time on the road.

Kirsty was working with several different families and the pressures on her were immense. She needed to take a complete break for several months, and after that would only be available to us for consulting and assessing. This was a huge loss to us. Kirsty was an integral part of our team as well as being Ian’s favourite tutor. We all listened to her opinion when it came to Ian’s education. For myself particularly, Kirsty had become a close friend, and I knew I was going to miss her.

Then Ruth pulled out. She was finishing her doctorate and was under enormous pressure – particularly as the university, which had initially supported her doctoral thesis, was now threatening to withdraw its support. Ruth’s thesis was perhaps more contentious than they had originally thought, and their ongoing refusal to recognise her work turned Ruth into a nervous wreck.  

Tania said she had to concentrate on her city practice and she stopped coming.

The final blow came when Anita got married, and her husband did not want her to continue working.

Our team had disintegrated within six months of our move and we found ourselves stranded.

Ian had progressed so much. By that stage, he had learned to write and draw; he was typing on the computer; and, thanks to Ruth, he had learned to answer questions properly, and could ask for anything he needed. He could say “Please,” “Thank you,” and “Excuse me” as necessary and was, to my mind, as near ‘normal’ as it was possible for him to be.

I passed him in the lounge one morning and said, “Hi Ian” as I walked by, and he immediately responded “Hi Mummy”, with a big smile on his face, making appropriate, uncoerced eye contact.

It really was a Wow! moment. We had achieved much of the change we wanted.  

*****

With no alternative on the horizon, I enrolled Ian in the pre-kindergarten group at the school Rory was attending. It catered for two-and-a-half to four-year-olds and although Ian was now a strapping great six, Barbara, the generous, gentle woman in charge, was happy to take him in.

Mixing Ian with a small group of typical kids was a huge success. It took him a while to adjust, and I had to go through a rather awful patch of separation anxiety where Ian cried and cried when I left him in the mornings, but this in itself was so gorgeously normal it had implications for me I knew no one else would really understand.

The other, smaller, children accepted Ian with love and generosity. He was a gentle giant among them, towering over even the tallest child in the class, and when he took their toys from them, they took them right back with frowns and complaints, and Ian learned the give and take of normal play.  

Every morning they had circle time, and because Ian seemed not to want to hold hands with the other children, he was allowed to stand in the centre of the circle as they sang their morning songs. Barbara told me how Ian would turn around slowly with a little smile on his face while the children were singing, as if he wanted to watch each child, and then, when they stopped, he would take over and sing their whole song back to them. This delighted the children and they always cheered and applauded after Ian had finished.  

The only problem with mixing an older child in this group reared its unexpected head one day during playtime. Ian, bigger, stronger and autistically unafraid, climbed the tree in the playground, right to the very top. I arrived to fetch him just at that moment, when Barbara was wondering what on earth to do next. I could see at a glance what her problem was – she didn’t want to leave the little ones unattended on the ground while she retrieved Ian, nor did she want to climb the tree herself, which might encourage the smaller children to follow her. So, ignoring the rather lovely white dress I happened to be wearing, I shinned up the tree to collect my son.

Ian was so used to playing physically with me that the minute I touched his arm he let go of his branch and would have fallen straight to the ground if I hadn’t managed to grab him firmly around his wrist. I held Ian tightly with one hand while he dangled out of the tree, and, with his full weight hanging off me, I was able to lean sideways and lower him to Barbara, who supported him the few remaining feet to the ground. Thank heavens all that swinging and tossing that Ian enjoyed so much had developed the muscles in my arms and shoulders!

Obviously Ian was not presenting the best example to his classmates, and after this incident I had to make sure that I arrived in time to fetch him before break time started. Barbara really didn’t want other smaller children climbing beyond her reach.

But watching Ian blossom during these few months, I realised that mixing an autistic child with typical kids of a younger age represented the very best that could be achieved. It had done Ian the world of good and he had learned to behave appropriately with the group in a way he never would have, mixing with other autistic children or at home in an intensive home programme. 

However, I still wanted Ian to be involved in some intense classroom-type learning, so in addition to mornings at the Roseway pre-Kindergarten (delightfully named Little Rosebuds), I enlisted the help of some retired teachers who lived in our neighbourhood.

These three women, I hoped, would have the teaching experience to keep Ian busy given that he was, at that stage, learning in a more normal way. However, it quickly became clear that they were all unsure how to approach Ian, and – clever little blighter that he was – he took great delight in running rings around them, day after day. These kind women just shook their heads. They really had no idea how to deal effectively with him. The most determined of them did get some results, but mostly they ended up working a great deal harder than Ian.

However, all of this fell apart when we made the biggest decision of our lives.

Addendum to Chapter 8 –

The photograph of Ian (above) is my most favourite photo of him, ever. It shows him at Little Rosebuds, interacting with two of his friends there. This in itself is glorious – the autistic child, interacting.

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