Autism : From the Inside – Chapter Thirteen

Time was marching on, the holidays were passing, and I had to make a decision. Was I going to take Ian back to the Autism Unit? In all honesty I just couldn’t face it.

I agonised and soul-searched and weighed up all the pros and cons over many sleepless nights, and finally made the decision to remove Ian from the school and reimplement a homeschooling programme.  

I felt all weak and pathetic for a while, but then I found myself again and knew that I had made the right decision. So I telephoned the Schools Inspector who sounded oh, so very sad when I spoke to him, but after I had stumbled through my well-rehearsed list of reasons, refused to point fingers at anyone or anything (although he kept digging for a name), and emphasised, yet again, that it wasn’t a decision taken lightly, he assured me that he was available for any advice or help I might need. I could contact him at any time. Letting the headmistress of the school know took courage I didn’t know I had, but she received the news surprisingly well (she’d probably already spoken to the Inspector) and, faced with my grovelling, obsequious patter, ended our conversation almost – but not quite – wishing me luck.

Suddenly we were on our own.  

In effect, what I had done by removing my child from school was raising a strategic digit at the Education Department and saying “I can teach my child better than your qualified teachers” which is never a really clever thing to say, even when buoyed up by the best of intentions.  It wasn’t a comfortable place to be.  

However, I knew that my child did not need day care. He needed to learn. These children are not brain damaged, they are brain different. Their ability to learn, their capacity to learn is there, fully formed and accessible, hiding – sometimes very effectively – behind their autistic mannerisms. These children need people who are prepared to work their way through the barrier of distracting behaviour to the Well Of Possibility within, the jam inside the autistic donut. If no one believes that Well Of Possibility exists, no one will ever be determined enough to make a difference. Making a difference means changing the status quo, encouraging the child to be more than the sum of his behaviours. It means not judging the child by his diagnosis or by his condition, but approaching him as a person first, an autistic person second.

I knew Ian had a working mind hidden behind a barrier of autistic behaviour, but that his capacity to learn and his desire to learn were unaffected by his condition. Ian didn’t have a learning disability; he had a brain that provided him with too many distractors, which prevented him from learning easily. But he had proved himself hugely capable of learning and deserved the opportunity to learn more.

Of course, the little man knew none of these things. He was ambling through his life most unconcerned. I was, at this time, teaching him to lay the table for meals – and never had you seen placemats set so straight! – to lock and unlock the car for me; to carry shopping bags to the car and put them in the boot; and to bring me the things I asked for. In everything, he learned new words. I made sure that he could not only read them but understand their meaning as well. I felt that the Autism Unit’s insistence that Ian read a book about animals having a party in the park (complete with drag racing) by pure word recognition, without understanding any of it, made me all the more determined that he should have an education that actually meant something to him. Comprehension, rather than party tricks. 

I also found that, thanks to his months in the Autism Unit, Ian had been so over-helped that he had lost his ability to start counting by himself. So when I said “Okay, Ian, let’s count”, he would sit looking at me, waiting for me to start. There was no way I was going to do it for him, to say “One…” so I sat and looked back at him, and waited.

“Count, Ian”, I reminded him gently. And waited. Many long minutes went by, and he needed reminding several times, but he eventually got the message and tentatively started, “One, two, three……”. “Good counting, Ian! Let’s do that again. Ian, count for me”, and he sat looking at me, waiting for me to start. So I waited again. It took weeks to get him beyond this block, but we did get beyond it in the end.

About to embark on schooling my son by myself again, I wrote to Ian’s erstwhile tutor, Kirsty, who had become a close friend. We had kept in touch and she was always very interested in Ian’s progress. Her support kept me going through some difficult, soul-searching times.  She wrote back to me – 

“…it was great to read your feedback. But reading it really gave me an overwhelming feeling of what a wonderful mother you are for Ian, and how far he has come, and continues to progress. Just reading about his responses and his language and other abilities is still truly exciting for me. You have never just “let him be” and your expectation for him to participate in our world is inspirational. I know because of who you are that you would think “But what other way is there?” but believe me so few parents ever grasp the concept, even after years.

Such small things like setting the table make such a difference, and I laughed out loud at the perfection of the place settings, knowing that dear man-boy as I do! I really hope I can get to meet him again one day.

That is great, that you’re going for the home schooling option again. I am sure you have made the right decision, for your instincts about systems, people and your children are acute and always intact, and one cannot forget that Ian has come as far as he has thanks to those instincts of yours. Of course you can make it happen; you have done it before, and you know the right path for Ian.”

Who could not be buoyed up when supported by friends such as her? Even with six thousand miles between us, our friendship remained strong and I asked her opinion and advice on virtually every aspect of Ian’s schooling.

I drew up a rough therapy schedule of things I felt Ian could do or perhaps should learn to do, gathered together some equipment (books, pens, paper, table and chairs, and the like), and home-schooling commenced.

The order of events was likely to change on a whim, but the schedule looked something like this –

Meet-and-greet – with appropriate eye contact and social responses

Days of the week – changing the arrow on the chart

Weather

Brain gym

Reading – any book that can be ‘made real’ (“Spot looks out the window” – Ian, point to the window. Good, go and look out the window. Come back and sit.)

Gross motor trials (more of a gym session really, touching toes, balancing on one foot, lifting chairs, jumping, swinging arms, etc. Very physical)

Vocal skills – object identification in more than one word answers (Q: What is this?  A:  It’s a pen!)

Prepositions – on/under, in/out, in front/behind, next to, over, through, etc

Time out – swinging on the swing, running around the garden

Songs / clapping / drumming / then sitting quietly, hands down

Fine motor trials (thumbs up, wiggle fingers, tapping index finger and thumb, tapping index finger with hands flat on the table)

Drawing and writing (painting too, in due course)

Maths – how many? and basic 1+1=  (I lived in hope!)

Reading – building confidence and learning new words

I found I could easily fill two to three hours with this routine, by which time both of us needed a break. Ian’s work ethic had gone out the window since our days of a rigorous therapy timetable, so that had to be addressed immediately;  but the thing I noticed first and foremost was how much he had grown up since I had worked with him last. Suddenly I was faced, not with a toddler, but with a strapping, nearly-eight-year-old lad who was as stubborn as a mule and could turn on the “I’m seriously autistic” mode in a flash, and entirely at will.  

Oh boy! We sat in silence as the minutes ticked by, Ian staring into space and refusing to read the word ‘The’, me digging in my own heels and refusing to prompt him. Eventually I begged him, in several desperate grown-up sentences, to read the words for me before I had a nervous breakdown. So he read the whole sentence fluently and without stopping. And then he refused to read anything else.  

And thus it went. In some ways, it was a difficult match. My expectations were high; I knew what Ian used to be able to do and I knew what I believed he ought to be able to do. I persevered. He would not beat me in stubbornness, and he would not convince me he was more autistic than I knew him to be. Even after only a few days, there were some improvements that I could see. Little ones, but improvements nonetheless.

Around this time I wrote an update to Kirsty –

“Working through the prepositions is the only time he really, really has to think, because I put three objects on the table and say things like, “Put the cow and the Lion under the box,” and he really has to listen, otherwise he gets it all wrong!

With the ‘how many’, I’m working with blue glass beads – they’re flat on the back so they don’t roll around on the table. With the beads lined up on the table in front of Ian, I can add to them or take them away as I please, and use Ian’s fingers to move them away from the line and get him to count by asking “How many beads?” I hope that the tangible identical beads will help the idea sink in better than pictures in a book. I suspect that to an autistic child, a blanket “How many?” could refer to motes of dust floating in the room, as much as pages in a book or colours on the page, as opposed to what we may expect him to count, say the number of flowers illustrated on a page. Ian’s very literal, as you know, and I’m trying to narrow the field by using something small and very specific. It may work. It may not. Time will tell.”

2 thoughts on “Autism : From the Inside – Chapter Thirteen

  1. Dearest Fiona,  I am not dead (but last night I hoped Trump would be dead by the time I woke this morning — have you ever actively wished someone would die?!! it is a horrifying feeling!! Maybe I should spend today thinking about what might possibly justify wishing death on someone and what should that death cost me. Maybe the cost should be my death, too. But hold on! Wait!! I don’t believe in an eye for an eye. …. I’ve lots of thinking to do.) Anyway, I’m not dead. I’m just so depressed and frustrated that for weeks I’ve been doing nothing, it seems, except waiting for nightfall when I hurry to open AcornTV and resume watching The Yorkshire Vet. Do you know how many hours and hours of living in Yorkshire’s dales and moors that documentary provides? I’ve seen more sheep, cattle, goats, kittens, pups, and piggies born than I can count. But I still can not (or is it cannot?) understand Mr. and Mrs. Green…..  According to my calculations Ian is probably 20 years younger than Sarah. Her birthday is July 11, 1976. Knowing his age in each chapter allows me to better and more accurately appreciate the chapter since I can compare his/your experiences with what I recall of Sarah’s/mine when she was his age. If you tell me his age is already included in the book, I won’t be surprised and I apologize now for not noticing it in either the book or the blog.  Now I’m going back to my inbox to read the chapters that are waiting. I haven’t been looking at email or facebook for quite a while. I’ve been hiding in Yorkshire.  I thought of you when I closed my bedroom curtains last night and saw our beautiful moon and its bright nearby star. Which one is that? Hmm. I’m not sure now. I’ll look it up later. ////////////// I like the new pictures very, very much! They add a lot of very helpful information. 

    Liked by 1 person

    • Hello, my distant friend. I’m glad you’re not dead. That wasn’t a star, but the planet Mars, which won’t be as close to the earth for another fifteen years. I haven’t thought to include Ian’s age in each chapter of the book – I may mention it in passing, pure luck! Ian was born in 1995, so 20 and a half years younger than your Sarah. ❤

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s