Autism : From the Inside – Chapter Eighteen

Was it all as good as it seemed? 

Hmmm… 

In some ways, yes, it was. Ian was learning well in school, although he was testing my patience to the limit with his stubborn silences and his determination to fight me every step of the way. Sometimes he wouldn’t let me get a word in edgeways while he chatted endlessly to himself, driving me mad with his incessant noise. Despite my best efforts to encourage him to join me in our world, he seemed determined to remain in his own one. In the face of this, it was very hard to remain cheerful, optimistic and enthusiastic.  

However, there could be no denying that Ian had progressed hugely since his days at the Autism Unit and educationally he was a different child. He had learned so much.   

But there were many things wrong with our set-up, too. I had to acknowledge that trying to do everything myself without even looking for help was an enormous strain. It often kept me awake at night, and I would lie in the dark worrying about what to teach Ian next and how best to approach it. 

Neil always supported me one hundred per cent, although there was little he could actually do other than give me lots of his wonderful reassuring hugs. He knew the strain I was under, but he believed in what I was doing and loved it when I shared Ian’s daily work with him, showing him all the things Ian had done, and commiserating when I vented about all the things Ian wouldn’t do. The Autism Unit experience had left us both scarred by the speed of Ian’s deterioration, and we were determined to protect our child from well meaning but misguided help.

Was this arrogant? Of course it was! But as Ian’s parents we knew we had to give our child the education we believed he deserved, and his continued improvement justified our decision.

At the end of August that year, I wrote to Kirsty –

“Ian was doing particularly well at the end of July, before I took a much-needed break from teaching him.  I had managed to formulate tasks that combined reading, comprehension and writing – giving him short sentences, which were incomplete, and requesting him to write in the required word. Quick example: “I like to sleep in my ____” and Ian would read the sentence, give the correct word ‘bed’ and write it in. I also write lists of “The opposite of up is ____” which Ian will read and complete, again writing in the missing word. He knows a lot of opposites now, which makes my job that much easier.  

I’m also having fun giving him sheets of paper with “Draw a happy face” written at the top, with a big circle in the middle of the page, which Ian would happily fill in with appropriate features. His ‘sad’ face is brilliant, a real downturned mouth and sad eyebrows! His cross face is great too, with a zig-zag mouth and strong angry eyebrows. I find it interesting that his facial interpretation centres around the eyebrows.”

Ian remained himself. Out of school he was bright, sunny, contented and loving. What a sweet kid. Mostly I think he enjoyed school unless the work was particularly taxing, and some days he was a pleasure to teach. 

It was just those days when he didn’t want to work and retreated to his own quiet place inside his head that were really trying. If he was in a mood to be passive, nothing I could do would get him out of it. I would sit looking at him wishing I could squeeze something out of him. 

Sometimes I would lay my head on my arms on the table and pretend to cry. Ian would listen for a while, then lift my head with both his hands and look at me quizzically. Do you mean it? his eyes would ask. On a good day he would say out loud “Do you need a tissue?” and I’d reply “Mummy’s sad, Ian. Please answer the question. Look at the picture. What is the boy doing?”  and without hesitation (on a good day) he might reply “He’s sleeping”. And I’d thank him and praise him and move on, and he’d retreat again and refuse to answer the next question, and I’d think, I’m going to go mad if this keeps up.  

But then, conversely, I could put a piece of paper in front of him marked Plurals with single words on it – calf, knife, foot, mouse, tooth, etc – and say “one calf, two …” and Ian would write the correct answer, and then the answers to all the others without prompting until the list was complete. Then he’d say, “I’m finished” and lean back in his chair. Gold star stuff!  

There were occasional surprises, too, when the growing-up-Ian displayed itself to us. He was much more his own person and often very determined to have things his own way. If, for example, you didn’t supply his juice quickly enough when he’d asked for it, he might put his face right in front of yours and say slowly and clearly (as if you were mentally challenged), “Please.  May.  I.  Have.  Some.  Juice.” and then, if you didn’t respond within the two nanoseconds Ian had allocated to this task, you might just get a mug slammed on the table in front of you, in case you still hadn’t got the message!

He was doing so well with me in school I started him on a new task, something I’d seen in a school exercise book, which showed a line of numbers with letters underneath, like this –

It took Ian a while to work out what was required, but once he realised that he could make actual words (most of which he could read), he got quite involved.*  I loved watching how his eyes moved from the blank line to the number underneath, up to the corresponding number and then down to the required letter. He then wrote the appropriate letter on the space provided. It wasn’t a difficult exercise, but it did require some concentration. Once Ian was managing single words, I started making short sentences, but then he lost interest and we had to move on to other things.

We were also working on the concept of ‘bigger’ and ‘smaller’, and I would draw quick sketches of things like a big butterfly and a small butterfly, or a big heart and a little heart, and at the top of the page write ‘Which butterfly is bigger?’ or ‘Which heart is smaller?’ and Ian then had to point to the correct one and write ‘this one’ underneath it.  This went pretty well; he earned himself a few gold stars for these pages. From this, of course, we moved on to ‘small’, ‘bigger’ and ‘biggest’ and ‘big’, ‘smaller’ and ‘smallest’ with equal success.

All in all, Ian’s education progressed, he was learning new things, and we were having fun into the bargain.

* Ian learned the ‘number alphabet’ so well, he started ‘writing’ words on his calculator. He would do it so quickly it was virtually impossible to see what he was up to, but occasionally I could catch him with a speedy “What does that say?” and he would read the ‘word’ to me. Once, he told me “Walk” – he’d put the numbers 2311211 into his calculator – and another time, it was “Juice” – 1021935. Today, he can read the numbers as easily as you or I might read the alphabet.

This was the easy version, though. I used other tasks where the alphabet corresponded with random numbers – like an adult ‘code words’ game. Ian got into these, too, but of course he always preferred the easy ones.

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