Ian was growing up.

At nine years old, his behaviour swung between the perfect child we knew and loved, and an utterly outrageous child we didn’t know at all. He was just coming out of a dreadful phase where the head hitting, hand twitching, shrieking, Teletubbie-thumping had been at an all-time high. I eased off doing school with him because my presence seemed to make his behaviour worse – and I couldn’t blame him, he must have been thoroughly sick of me – and when he was at his worst there was no way I could get through to him in any event so it was pointless trying.  

As the days passed, though, he seemed to be improving. He was happier within himself, and calmer all round.  Until one morning.  

I had suggested that Ian get dressed – a normal everyday suggestion, put to him in a normal everyday way – and I knelt down on his bedroom floor to help him, whereupon Ian threw himself down on his bed, thrashing like a wild thing. Then he launched himself at me and screamed directly into my face.  Shrill, long, and very, very loud. It was really quite shocking.  

I looked at him sternly when he’d finished and in an upset, constricted voice I said to him, “How dare you scream at me? I don’t get to scream at you. I’m the one who wants to scream …”

Then we both sat in silence. I think I was pinching the bridge of my nose and had my eyes closed (oh, how I longed to be far away at that moment) when all of a sudden this husky little voice next to me said, “I’m sorry.” 

Well, I was pretty stunned but I immediately gave Ian a big hug and told him, “It’s okay, my boy. We’re both alright now.” And he hugged me back. Then he took his pyjamas off and was happy to get dressed, and I was left thinking Gosh, the things that happen.

Later that evening I took Ian into the bathroom to brush his teeth. I usually sit on the toilet seat with Ian standing in front of me, but that night when I sat down Ian threw his arms around my neck and clung to me in a really tight hug. I manoeuvred him into my lap and hugged him back. It really gets me when he does this, and I had trouble breathing past the lump in my throat. Then a little voice from my neck asked, “You okay?” which choked me up even more, but I managed to reassure him that I would be fine. 

When I opened the bathroom door, Neil was standing there looking a bit concerned. “You were gone for so long I wondered if everything was all right,” and I smiled sadly at him. 

“We’re fine,” I said. “Ian wanted hugs.”

This didn’t happen often, but in some strange way it was almost like the opposite of autism.  Ian wasn’t shutting me out and holding me at arm’s length; he wanted to join us together, in that moment, in one world, where all was straightforward and clear. 

And at that moment, in that hug, I could make it happen.  

In one of her marvellous letters, Kirsty had asked me if there was anything I would do differently, if I had the chance to start all over again. I spent a long time thinking about this one. My natural introspection meant that I had considered this question before many times, and with hindsight always so much clearer, I had to be careful not to beat myself up about mistakes I might think had been made along the way. 

I wrote to Kirsty –

“What would I do differently if I had my time again? A few things that I can think of now.  As a mother I’d be more forgiving, less demanding. I’ve become so, but I didn’t used to be.  I mean more forgiving of the child’s autism, his lack of control over it. We’ve always treated Ian like a normal kid with odd behaviours. This, in retrospect, hasn’t always been the right way. Mostly, but not always.  

I’d have let my child achieve more unaided – it’s too easy to assist all the time, and the child never learns how to do it him/herself. Standing back and just waiting is the most powerful tool you have. As long as the child actually knows what is required, it’ll come, eventually. I once made notes for forty minutes whilst waiting for Ian to put his socks on. He went through his entire repertoire of avoidance techniques, but I wouldn’t be moved. I refused to do it for him and forty minutes later he did it for himself as I had always known he could.  

As a tutor I’d have started with the written word far sooner with Ian. I have video footage of him, even within the first few months of therapy, trying to look at the words on the back of the flashcards, more interested in the words than the pictures. He could read long before we gave him credit for it.

I’d also give the child the tools and the confidence to contradict me. One spends too much time teaching positives – ‘What is this? Yes! It’s a cow!’ or ‘Point to the shoe. Good pointing!’  –  we don’t arm the child to be able to say ‘Rubbish!  It’s not a horse, it’s a tractor!’”

It was an interesting exercise, thinking like this, because it made me face up to a few home truths at a time when Ian was going through another difficult patch. His latest behaviour to emerge was a violent twitch, which I truly could not cope with. All the other behaviours he had been through up to that time had been either easily controlled or easy to ignore – the hand flapping, the noises, even the face pulling – but this one I just couldn’t take. To hold his hand and feel him violently twitching his fingers was really awful. I prayed that it would pass soon.  

One morning, after a successful but difficult lesson at the kitchen table (successful because his work was good, difficult because he kept trying to tune out and I had to work hard to keep him focused), we went for a walk along the lane. It was a beautiful autumn morning, with a soft breeze, high clouds, occasional sunshine, and birdsong everywhere. Holding Ian’s hand as we walked together and feeling him violently twitching his fingers every few seconds depressed me almost more than I could bear.

We walked down a track through a little forest which has a small stream running through it. It was a wonderful place to walk because I could let go of Ian’s hand and let him run free without having to worry about traffic – there was nowhere he could go but on the path.  When we came to a more open area where Ian liked to throw little stones into a meandering stream, I watched as he stepped onto a large rock in the middle of the stream. 

Then, deliberately and with forethought, he jumped into the running water. Well, he was wet and there was no point getting het up about it, so I let him get on with it. Occasionally he looked my way, and I smiled and nodded my approval.  

For forty-five minutes, he played in that little stream, kicking the water, jumping in it, splashing it with his hands. And for those forty-five minutes, he was blissfully happy.  Smiling and giggling to himself, he played and played. And while he played, I watched and walked in large silent circles on the forest path, trying to come to terms, yet again, with what it means to have an autistic child.

Ian’s speech was improving slowly. He knew many words but consistently refused to use them. This was deeply frustrating for me, knowing that he had such a large vocabulary in his head that he wouldn’t use. I had listed the words he had learned, and knew that he had more than 550 words at his disposal, and yet his conversation revolved around set requests like “Toy Story video please, Mummy” or “Push me, please” when he was on the swing. He could express his needs and wants, but appeared not to want to learn to speak more than was absolutely necessary.

However, there were occasional surprises, like the day I took Ian for a walk in a nearby pine forest.

The forest floor was very damp from all the recent rains we’d had, but the mossy tussocks provided a dryer path, as long as you could keep your balance. 

Ian, of course, had no trouble at all – well, he could stand upright on the back of his rocking horse, rocking, whilst reading a book, so obviously his balance was fine! Mum, on the other hand, falls over at the drop of a hat, or in this case, the shifting of a mossy tussock. 

Thankfully, I fell into a dry ditch, not a wet one, and the moss was very comfortable to land on. But what took me by surprise after I’d landed was Ian’s little voice saying “Oopsie!” as he surveyed his Mum in a heap on the ground. His “Are you okay?” as I got up was so appropriate I hastened to reassure him that I was, surprisingly, quite fine, no damage done, whilst privately I marvelled at his concern and his compassion, and knew I would never forget the moment.  

We continued our walk over the squashy moss, punctuated by Ian saying “Oops!” every time his foot moved when he didn’t expect it to. It was really very funny.

One afternoon, Neil and I were sitting at the kitchen table discussing Ian’s work and his progress, as well as his occasionally extraordinary behaviour, his growing up, etc, when Ian walked through the kitchen and opened the back door. For whatever reason, I didn’t want him to go out and said, almost to myself, “Ian, please stay inside” to which my darling, pliable, amenable little boy shouted “I want to go OUTside!” – and promptly did – thereby resolving something Neil and I had just been discussing, i.e. did Ian actually understand the concept of opposites? 

Ian was finding quite a voice for himself.

Then one day Ian brought me his barking dog, looked at me intently and said “Red” with meaning. I looked at the dog.  It was brown, black and white, with no visible red. Perhaps its tail wasn’t wagging again. I pressed its paw to make it bark. Nope, the tail was fine.  

“Red,” said Ian, again. Then I spotted a length of black cotton. Aha! Thread! 

“Fred,” said Ian, amending his request.

“Fetch me the scissors, Ian,” I told him. 

He romped off to the kitchen and brought back the tin opener. Not quite what I was after, but a reasonable alternative. No good for cutting the ‘fred’ though. 

“Rory!” I called to the kitchen. “Give Ian the scissors, please.” 

Within seconds Ian romped back into the lounge with the scissors and I cut off the offending thread. 

“All fixed,” I told him.

Ian then examined his dog from every conceivable angle, and disappeared back into his bedroom.

Ian’s thread fetish became slightly scary after that because he would spot an offending length of something and get the scissors himself. The kitchen scissors were about seven inches long, large and strong, for kitchen use. I made a point of following Ian back to his room when he took the scissors, just in case.

One day Ian ran into the kitchen saying, “Scissors please, Mummy” and taking them off the hook, he ran out again. I followed him – running with scissors, honestly! – wondering what he’d seen.

I found him sitting on his bed, aiming the scissors at his face. When he saw me, he opened his mouth and pointed to a wobbly tooth.

“Scissors… please, Mummy.” 

Horrified, I gently took the scissors out of his hand. 

“Oh nooooo, my child. No scissors for that. I’m sorry, but no. Not this time.”  

He looked quite disappointed. He sensed that his tooth was hanging by a thread; what was the difference?  Later that evening, he pulled the tooth out with his strong nimble fingers, and thankfully didn’t try to damage himself again. But boy, that was one scary moment. 

And then there were the exceptional moments when Ian appeared to have leapt linguistically in a direction no one could have anticipated.  In December of 2005 I wrote to his erstwhile speech therapist, Ruth –

“I meant to tell you about an incident which happened the other evening. I was watching TV, one of these ‘reality shows’ about a group of people walking through a desert – all of them complete novices – none of them possessing, apparently, the strength of character to avoid whining or complaining – you know, the kind of TV which seems so popular these days, and I was just about to turn it off when Ian appeared at my shoulder, looked at the telly, and said, clearly and distinctly, “Prehistoric man.” 

I looked at Ian, looked back at the TV and had to admit that yes, one of the fellows did have a vaguely Cro-Magnon face, but I wouldn’t go so far as to call him ‘prehistoric man’, and I looked back at Ian and queried “Prehistoric man?”  His mouth curved into the most gorgeous smile as he glanced at the telly, and he repeated it looking straight into my eyes: “Prehistoric man!”  And then he was gone.  

Good grief! This happens every now and then, a bizarre stunner which we cannot take credit for. God knows where he got that one from. ‘Prehistoric man’? It’s not something which one constantly uses in normal everyday conversation, now is it?

Just wanted to share.”

I had long since realised that Ian saw far more than the rest of us, heard more than the rest of us, and quite possibly remembered more than the rest of us; that his mind probably held so much information I was no longer surprised that he couldn’t always retrieve the word he needed. We dump information all the time. Imagine if you couldn’t do that, if all the information you had ever acquired, all the things you had seen and heard, sat cluttered in your head, forever. It explained much to me about why autistic children needed to ‘zone out’.

Then again, there were times when Ian’s use of language was so perfect it seemed almost impossible.

One day, I was sitting at the kitchen table playing a game on my laptop, supervising Ian who was watching a DVD of The Sword in the Stone. Neil made a comment about my figure, saying that a near neighbour who had stopped at the gate for a chat while we were gardening earlier in the evening must have been envious (What a sweet man. Surely it was a trick of the light, darling!), and I countered with the comment that I was envious of her because she had just told us she was expecting her third child, and I would give anything to be pregnant again. And with exquisitely perfect timing, Ian, very softly and almost to himself, said, “You scare me.”   

Well, Neil and I just burst out laughing! Neil agreed wholeheartedly with Ian, saying that when I made statements like that I was particularly scary, but what a moment. Heavens, it was funny!

But where did he get that one from? We had no idea. We couldn’t think of a video it came from, and he certainly hadn’t heard it at home.  One just had to wonder. It wasn’t just appropriately timed, it was an appropriate comment – in fact, Ian’s first joke when you come to think about it. Oh me, oh my. Out of the mouths of babes and autistic children…

Of course, as a parent there were times when we had to use his own language back at him, like the time Ian was fixated on an alphabet song from one of his Spot DVDs, and often delighted us with “A is for Acrobat, B is for Ball, C is for Car, D is for Dolphin…” straight from the song. On this one morning Ian was determined to leave the breakfast table long before he’d finished his breakfast, and I was equally determined that he should sit. So I quipped “P is for Please, E is for Eat, Y is for Your and B is for Breakfast.  Please Eat Your Breakfast!” And the most beautiful little smile came over his face as he worked through what I’d just said. He gave me an amused glance – I can only call it that – sat back down, and started to eat again. It was the most wonderful momentary connection, and a great start to my day. 

What a kid!  

I include here two more video snippets (slightly longer this time) which will, I hope, give you more insight into how we worked together and what we did.

I think it is important to stress again that I wasn’t working from a textbook or following a set programme. I read a great deal, and I did a lot of thinking – usually in the middle of the night.

It was one thing to decide “Oh, I need to teach Ian such-and-such”, but quite another to reduce that task to its barest essentials and formulate a path of progression which would take Ian from nothing to the final goal. And progression was what it was all about. I aimed many tasks at Ian’s strengths (to keep motivation high), and I constantly reviewed his progress. Was he getting it? If not, why not? Could I teach it another way? etc.

I taught Ian things I felt he should know, and because I made up exercises as I went along, I was able to teach them in a way I knew Ian would understand. Because he was so clever, if he didn’t get it, I wasn’t teaching it right. It was pretty obvious.

These snatches of video are only ever a tiny snapshot of one morning’s work, mere seconds of several hours’ concentrated effort, every weekday of every month.

Thankfully, Ian was a wonderful pupil, and I hope that the fun we had together and the joy it gave me to teach him comes across in these video offerings.

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.

But getting back to Ian’s schooling, every now and then I would be brought up short by the realisation that there was a marked hole in Ian’s abilities. I realised one day that he was using his name as a key, and that he would only respond if his name was included in the instruction. For example, if I said to Ian “I love you”, he would ignore me, but if I said, “I love you, Ian,” he would answer, “I love you too, mummy.”

This was very nice and very cute, but what it meant in real terms was that when we were out and about, he wouldn’t greet anyone because strangers didn’t know his name. They would greet Ian with a cheerful “Good morning” without giving him the hook (‘Good morning, Ian’) for him to hang his answer on.  

This was quite important as the Irish adore children and they will always greet a child. To not respond is very rude and even when I explained about Ian’s condition and they understood completely, it was still embarrassing (to me) when it happened. 

Once I had realised this, I started teaching Ian to respond to me when I only said “Good morning”. At first there was a deathly silence while he ignored me completely. Then he realised that I was actually waiting for something. It took a while, but we got there in the end and he did start to greet me in return. I hoped that when the lass at the supermarket checkout greeted him, Ian would be able to respond appropriately instead of ignoring her.  

He did, but I don’t think she quite caught his “Good morning, Mummy…”

In one of our earlier speech therapy sessions, the therapist had shown Ian a picture of a chap riding a bicycle and the front wheel of the bike had hit a rock, so the back end of it was up in the air and the chap was falling forward. She had asked Ian to explain what was happening in the picture. After a deafening silence of several long minutes, Ian summed up the situation most succinctly. He said, quite simply, “Oops!”  

I thought it was brilliant.

However, it did bring to light a gaping hole in Ian’s knowledge – the ability to explain anything or to make comment on anything. So I started working on comprehension exercises with him, at that stage fully prompted because he didn’t have a clue. Reading him a story three sentences long and then expecting him to answer questions about that story was much like waiting for a rocking horse to neigh. It highlighted the enormous hole in the autistic mind, the inability to comment on something or to think in abstracts.

Ian looked completely bored by the whole idea and if I couldn’t get him interested in it, how was he ever going to progress in this area? It was and has remained a frustrating problem area. 

But the highlights were so all-encompassing! Small though they were, they were huge to me, desperate as I was for any sign of progress. I wrote to Gail in July of 2004 –

“For the first time ever, today, Ian gave me a weather report! He looked out of the window and, with no prompting whatsoever, said “Grey. Today it’s cloudy!!” I was so surprised I nearly fell off my chair. Whoopee!”

And later that year, I wrote again to Kirsty, filling her in on Ian’s progress and the things I was teaching him –

“…I found myself taking a step back from Ian’s school work the other day to look at how far he’s come in the year I’ve been teaching him. Okay, so it’s not miraculous or anything like that, but he’s learnt to write again – and neatly at that – and he’s learnt some elementary sums (he knows that 1+1=2, and 2+1=3, that 1+2 also =3, that 2+2=4 and he’ll hazard an accurate guess that 3+2=5). He’s so chuffed when he gets it right! He’s also writing his plurals now – I have pre-prepared sheets on the computer which I change daily and print out for him – one goose, two ______, three feet, one _____ – so I present him with a list of five or six different ones and he writes in the correct answer. He’s also doing sheets of opposites, and completing simple sentences.   

I’ve finally got him to the stage where I can show him a picture card and ask him “What is the girl doing?” and he’ll answer “The girl is reading … the book” or “What is the boy doing?” and he’ll answer “The boy is knocking on the door,” which makes my heart soooo glad. I whoop and cheer and clap my hands, and Ian sports this little smile like he’s secretly really, really pleased.” 

 

While I was home-schooling him, Ian had a computer in his bedroom. It was disconnected at night but he had free access to it during the day when he wasn’t in the classroom. He had a limited range of programmes on it, but what he managed with those was nothing short of extraordinary.  

The programme Ian loved most was ‘Paint’, a programme which allowed him to make pictures using squares and circles, which he could move around to create a picture. Changing the sizes of the shapes and filling them in with colour meant Ian could reproduce – recognisably – scenes from some of his favourite DVDs.

It took me a while to realise what he was doing. It was only when I saw his bee picture, and recognised it as a scene from Winnie the Pooh, that I understood what he was up to. When I looked at the film of Winnie the Pooh myself and paused it at the scene Ian had recreated, I was astonished at what he had achieved using only circles and squares.

  This led me to look more closely at all his other pictures as well. If this one was so accurate, perhaps others were too.    

There was a certain amount of guesswork involved because Ian wouldn’t identify where the picture came from, and although his very artistic older brother, Rory, recognised several, we never found out the root of many of them.   Sadly, in the end we had to take Ian’s computer away from him because he seemed fixated on only one picture which he created over and over again. It was a close-up of Thomas O’Malley from The AristoCats, in the scene where the tomcat leaps on the milk wagon and terrifies the driver, so Duchess and her three kittens can get aboard and journey back to their beloved Madame in Paris.

It was only months later that I realised that Ian hadn’t been recreating the same picture, what he had in fact been doing was minutely changing each picture, and recreating the DVD footage, frame by frame. He was creating his own animation, which he could flick through on his computer, one picture after another, replaying the scene for himself!

 

Aside from the computer – which had been a very successful gift – we struggled every year to find Ian a birthday present he would enjoy because his range of interests was so narrow. Then we had a brain-wave and for his birthday that year, we gave Ian a keyboard.  

At first, he played strange, haunting, other-worldly experimental music. Plinky-plonk tunes that had neither beginning nor end. This kept him busy for quite a while before his interest waned.  

Then he went back to it, but this time spent hours shaping chords. He found three that satisfied him, and he repeated these in a sequence for many weeks. Then his interest waned again.  

When he came back to the keyboard, he seemed to have a purpose. He fiddled with the notes until he could produce a succession of chords. And it was only when I heard the full progression that I realised what he was up to.   The music he had successfully recreated, without training or assistance, was the background music to the opening number in the film, ‘The Lion King’.  

And then, wonder of wonders, one afternoon I heard him playing the chords and very quietly, entirely to himself, he sang over the top –    “From the day we arrive on the planet and, blinking, step into the sun / There’s more to see than can ever be seen, more to do than can ever be done…”  

I stood outside his bedroom and cried.    The beauty of that moment was so intense, so huge, and simultaneously so frustrating, I didn’t know what to do with myself. It was so perfect I was breathless, but why-oh-why didn’t I have some recording device with me! I knew I might never hear Ian do this again, and this precious moment would be lost forever.  

In his teens, of course, Ian’s voice broke and he could no longer sing all his songs the way he wanted to.  His near-perfect pitch was deeply offended by his ‘new’ voice so he stopped singing completely, which was really, really sad.  

Two more short snippets of video footage – and yes, they’re from the same day as last time. I didn’t often video Ian in school – he found it quite distracting having a camera on him – just when I wanted to keep a record of what he was doing, and particularly, what he was doing well.

School with Ian swung between rewarding and occasionally frustrating but I knew he was learning things. Within one week he learned to put on his own socks (once he got beyond the idea that I would help him do it), and he could undo buttons as well as doing them up. He was counting objects on the table and giving me a confident and full response, “There are twenty-seven beads!” when I asked him how many of the blue beads there were.

It had taken a few weeks but he got there.  

He learned to squat and stand on one leg by himself during our exercise session, to co-ordinate saying ‘out’ and ‘in’ with the movements in star jumps, and he could, at last, touch his toes while I held his knees*. He could cut reasonably well with a pair of scissors – when I gave him a pair sharp enough to cut. He could differentiate between and point to ‘big’ or ‘little’ objects, although occasionally he did so appallingly badly I would wonder how he’d got nine out of ten for the same exercise the previous day! His writing was improving slowly and his reading could be extraordinary, depending on the position of the stars…  

On the downside, despite my best efforts, he still had no understanding of the concept of ‘weather’ – or maybe he really did, because pointing to ‘cloudy’ was a pretty good coverall in this part of the world! – and he was making no improvement at all in the naming of facial features.

I was standing so close to the coalface it was almost impossible for me to see the bigger picture. My life revolved around how much Ian might concentrate on any given morning, or how much self-chatter I had to fight my way through. The fact that he was a reading, talking, thinking child who had a vocabulary of at least 500 words and could do so much was often swamped by how he misbehaved around the house, or by how insecure I was feeling about what I was teaching him.  

I approached my ‘teaching method’ from two specific standpoints : ‘Is this useful to Ian’s future?’ and ‘If an Inspector came round today, would I have anything that looked like anything to show him?’** so our progress was a bit haphazard, but progress was made. I had come to love Ian’s capacity to learn – particularly his love of anything to do with words.

So I forged on, reassured by my sweet husband that despite my lack of formal training I really did know Ian best, and reassured greatly by Ian’s own progress. It was not easy, but some days were so rewarding I knew we were on the right track.  

I had also kept in touch with Ian’s erstwhile speech therapist, Ruth, and wrote to her –

“…it’s a funny thing, teaching your own child. You wonder time and again whether you’re doing it right. After all, in the absence of any training or qualification, who am I to say what – or how – my child should be taught? But with a child like Ian, when things go well it’s all so obvious. Our lessons are filled with humour, from sly smiles when Ian makes deliberate mistakes to see my reaction, to near hysteria when a difficult task has gone well. It’s entirely up to me what I actually teach my child, so I can examine Ian’s entire range of life skills and see where the gaps are, then make up tasks to bridge those gaps – and decide how I’m going to teach them.

Because Ian’s word recognition skills are so profound, I have taken to using the written word wherever I think it may work (actually I wish we’d tried this years ago). It was taking me weeks to teach Ian the difference between big and little. He just didn’t seem to be getting it. Then I had a brainwave (actually the opposite of a brainwave, a realisation that I was being stupid). Ian can read the words ‘big’ and ‘little’, so I wrote them down on a piece of paper and cut them into separate labels. I lay these two labels side by side. “Ian, point to ‘big.'” For a moment, the utter simplicity of the task flummoxed him, but then he tentatively pointed to and said the word ‘big’. Much praise. “Ian, point to ‘little’”. No hesitation this time, but he kept glancing at me to check I didn’t want anything else from him. We tried it several times, and the task was so simple there couldn’t be any mistakes. Then I added the toys I had been using previously. Big Lion, a large cuddly teddy and Little Lion, a small plastic model. By keeping the labels on the table, there could still be no mistake, and suddenly we were getting 100% for an exercise which last week had been entirely unstable.

I’m still keeping the labels with the toys for the first part of the task, but can now remove the labels from the table, repeat the task, and still get 100% correct responses. Ian is happy because he knows he’s getting it right, and I’m happy because I feel like a good teacher.

Ian’s also able to say his name clearly (“My name is IAN!”), address and telephone number now, and is learning to give the correct response (“Yes”) when I query “Is your name Ian?” We’re now working on plurals (one bird, two birdssssss; one car, two carssss) again with labels and toys, and he’s beginning to get it. I’m also trying to get him to complete sentences with the appropriate word – ‘The …… is in the book’ with the options ‘tree’, ‘juice’, ‘sky’ and ‘story’ on small pieces of paper which he can insert in the sentence; and ‘The juice is in the ……’ with the options ‘bed’, ‘car’, ‘bath’ and ‘cup’, etc. Because Ian can read all the words involved, these exercises become a lesson in comprehension – if he didn’t understand the sentence, he couldn’t give me the correct response – and so far he’s doing very well. Certainly the speed with which he scooped up the slip of paper with the word ‘story’ on it and placed it in the gap provided and likewise put the word ‘cup’ at the end of that sentence, let me know he understood what I wanted. He then read me the completed sentences and seemed content when they sounded right.

It must be said that when we’ve romped through his tasks together, and shared so much humour, it gives me a real high because he’s making great progress and seems happier within himself than he has been for a long time. In that event, I can’t be going that wrong, can I?”

Several months later, during March of 2004, Ian surprised us one evening while I was cooking supper by asking to “go to the classroom”. This in itself was a surprise, but not a request I was going to ignore so I took him there. When we got there, he spent a few moments making music on the electric organ, and then I sat him down at the table and presented him a book, which contained words I knew he could read as well as words he was learning. He then produced the best, most fluent reading I had ever heard from him. Sentence after sentence, pointing to the words with his own finger. He barely paused for breath. It was another real Wow! moment.

Things were going well with Ian’s homeschooling programme, but in order to assess where we stood, I invited Gail – a psychologist who worked at a school for autistic children in Cork – to visit us and assess Ian. Gail came to our house and spent a couple of hours in our little classroom, observing Ian as we ran through most of the exercises we were working on at that time.  

Her report arrived a week later and I was gratified to see that she said we were working on “a fairly comprehensive list of programs that address a broad spectrum of Ian’s educational needs”. Overall, she seemed pretty impressed, which gave me confidence in what I was doing.

Gail also gave me some new exercises to work on with Ian, as well as a specific plan of action to encourage ‘classroom self-management’ (school self-sufficiency), something her school was geared towards, which would hopefully teach an autistic child how to cope in a normal classroom setting.  

As a result of this, Ian was to be presented with a list of work to be done, which he would read through before he started. The list might read Physical Exercises, followed by Reading, followed by a Word Search, followed by Work On Plurals, followed by a Trampoline Time Out, followed by Cutting (I was trying to teach Ian to cut on a line with scissors rather than just annihilating a piece of paper, but his efforts were really haphazard), then Writing, then Sentence Building, followed by a Music Break. Each item on the list had a vacant square on the right-hand side of the page into which Ian stuck a sticker when the exercise was complete. He took to this approach like a duck to water, and also learned (within a week) to say “I’m finished” when a task was complete. All work was placed in order in a pile on his table, so Ian could take it, do it, and tell me he’d done it, with almost no help from me.  

A new thing I had started Ian working on was a Word Search, which was a real breakthrough because it tapped into his ‘splinter skill’, his natural talent for patterns and his love of words. Sitting watching him finding the words from the jumble of letters and marking them off, entirely on his own, quiet and concentrating, wrapped up in his work, was a most wonderful sight. Hearing his soft husky voice saying, “I’m finished” when he was done was just an added bonus.

Then Gail suggested I try working with two lists of work, taking a break after the first list and then returning to the classroom to start on the second list. We worked through the first list pretty well, went into the garden for a swing on the jungle gym, and then returned to the classroom for list number two. Ian shutdown completely! He looked at the new list with absolute disgust and refused to co-operate at all. The minutes ticked away … his opinion didn’t improve. It was a pity, really, because he had started the day in excellent spirits. The second list had to be abandoned; it was just too much.

I had started a new task with Ian, which involved two columns of things down either side of an A4 piece of paper, with the word ‘Match’ written at the top of the page. They could be numbers, letters or pictures to start with, the order on each side of the page was different so that the child had to draw a line to connect the matching numbers/letters etc from one side of the page diagonally to the other, like this:

Ian loved this, and quickly romped through the easy ones. So I began to make the task more thought-provoking, listing animals with their babies – cow/calf, dog/puppy, duck/duckling, etc, concepts like bed/sleep, cup/juice, chair/sit, or plurals like goose/geese, foot/feet, house/houses, tooth/teeth, etc. Ian had no trouble with these either, so I took it a step further with more abstract ideas like sky/blue, grass/green, sun/yellow, clouds/grey, flowers/pink. This last one really caught Ian’s attention and he spent quite a while reading it but when he saw the connection, he was away. It was marvellous to watch the concentration on his face and to know that he was actually really thinking about things. It was hard to find tasks which captured Ian’s interest, and I was very grateful for these simple yet thought-provoking exercises.

* Because of Ian’s toe-walking, his hamstrings were exceptionally tight. I worked tirelessly to help his stand flat on his feet, and to gently stretch the muscles on the backs of his legs to make this easier for him.

** Of course a School Inspector never appeared. I realised fairly quickly that by removing my child from the system, he had become just ‘one less autistic child to worry about’, and no one seemed to care what we were doing or how we were doing it.

It seems autistic children can be divided into two groups – those who run away, and those who don’t.

It took us several years to discover that Ian was a runner. Perhaps because we lived in South Africa, we were lucky. Our grounds were fenced and locked in any event and, apart from that awful time when the bougainvillea hedge was hacked to shreds and our security was breached, there was never a moment when Ian could have wandered off on his own. We had an inkling perhaps – he had snuck out the gate when a delivery was being made, but I noticed him doing it and called him back – but we had no real understanding of the seriousness of it.

When we first arrived in Ireland, our new home had a low front wall and a gate which was only three feet high. This didn’t concern us initially. We even have a photograph of Ian sitting on the front pillar (above), that’s how unconcerned we were.

Ian and his brother played outdoors constantly that first glorious Irish summer (I’m not being sarcastic, it really was warm and sunny that year!) and we didn’t worry about him at all. Ian was never far off our radar; that’s just the way things were. We kept an eye on him simply because of who he was.

And then one day I was gardening and I walked around the side of the house to empty my basket into the compost bin. I was out of sight for only a moment, and I fully expected to find Ian in the garden where I had left him when I returned, but he wasn’t there. I walked right around the house, thinking he must have rounded a corner ahead of me. No, he hadn’t.  Alarm bells were beginning to ring.  He wasn’t in the field either.  Last option:  his bedroom.

No Ian. 

I burst in on my husband, startling him as he was working. 

“Ian’s gone.”

Those small words changed our entire lives.

Where we live, high on a mountainside in a deeply rural area, the roads are filled with options for the wandering child. Out the front gate, and we were faced with our first problem:  Did he go right or left?

If he went right, he could have gone down the hill towards the bridge (fast-flowing river), or up, towards the mountain (a vast expanse of tracks and open space to get lost in).

If he’d turned left out the gate, there was a lane off to the right, a potential left turn (up the mountain again); two attractive forest paths where Ian was used to going for a walk; a crossroads; and, if he hadn’t been stopped before he got to it, a busy National Road. 

Our blood ran cold. Absolutely nothing in life prepares you for the empty road and the mind-numbing horror of a missing child. A child who has the speed, agility and determination of a seven year old but absolutely zero sense of danger? Double it, at least.

Neil and I flew in opposite directions on foot. I ran to a near neighbour begging for assistance, and without hesitation she jumped into her car and roared down the lane towards the bridge. I forced myself up the hill towards the mountain.

I learned that day that fear leaves you weak and breathless, and my run up the hill became a panicky gasping walk.  If Ian was running – and there was every chance he was – he was outstripping me with every step.

This was in the days before everyone had a mobile phone, so we were all alone in our desperate search, with no way of communicating.

I heard a car behind me and I turned around, ready to ask a passing tourist if they’d seen a young lad in a blue t-shirt and shorts with bare feet running in the road … but it was my neighbour. She had found Ian a mile and a half down the lane, almost at the bridge, and still running. Her biggest concern when she’d stopped the car had been whether he would get in as he didn’t know her well; and then she became even more concerned when he did.

“Would he do that for anyone?” she asked me. It was a grim truth. Yes, Ian loved travelling by car, so yes, he would get into any car, with anyone. It didn’t matter whether he knew them or not.

The next day, the man came to put up the six-foot fence, and Neil built up the brick pillars and we had them measured for six-foot gates. We didn’t have a padlock at first, but another ‘walkabout’ changed all that. This time Ian went left out the gate instead of right, but he was seen by a neighbour, running past their house, and was quickly caught.

One day Ian carried a chair to the new gate, and spent a while looking at the chair-to-gate ratio, weighing up opportunities. Another time I watched him carry the aluminium ladder to the gate and climb it, but I think the potential fall on the other side of the gate was enough to change his mind.

Autistic, not stupid.

I tried to be brave, to let him work out the impossibility of escape for himself, but it was hard to watch him trying. Did he really want to leave? Or was he playing some private game?

Locks became a way of life for us after that. Ian’s bedroom window remains locked so he doesn’t climb out of it; the front door is locked; and the front gate is locked all the time.

All because we are desperate to keep our child safe, and because we live in fear of those few little words:

“Ian’s gone.”

Addendum to Chapter 14

Many years later, as Ian was finding his way in adult services and adjusting to a new day centre – and, of course, causing ripples because of security issues – it was suggested to me that maybe Ian had ‘grown out’ of his need to run away. Maybe Ian’s desire to escape should be ‘tested’ by giving him an opportunity to do it.

I rounded on this man with all the suppressed rage of the over-tested mother, and said “I hope you can run VERY fast, because when my son is found dead in a ditch a hundred miles from home, I’ll be coming after you.”

Needless to say, it wasn’t tried.

Then Ian made his own case one day when he dodged away from his support staff on a visit to town, and gave them all the fright of their lives. He was quickly stopped, thank heavens, but the lesson was learned, once and for all.

(This Chapter links with a previous blog post, Once Upon a Time – Keeping The Autistic Child Safe)