Autism : From the Inside – Chapter 15 extras

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.

At the beginning, you can hear Ian reciting from Disney’s Alice in Wonderland – the Red Queen asks Alice “Are you ready for your sentence?” and Alice replies “Sentence? But surely there must be a verdict first!” Ian was playing with the intonation of the two words. This task was one which I designed myself – a sentence with a word missing, and Ian had to complete the sentence choosing from four options.

Match exercises were almost a reward in themselves, Ian enjoyed them so much. I tried to make them progressively more challenging, to keep Ian’s interest and make him think.

Autism : From the Inside – Chapter Fifteen

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.  

Not every day was peaches and cream …

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.

Autism : From the Inside – Chapter Fourteen

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)

Our lives revolve around this.

Autism : From the Inside – Chapter 13 Extras

I apologise in advance if this doesn’t work. I thought you might like to see a couple of snippets of video footage of Ian in class with me, shortly after we started home-schooling, so here you are. They may take a moment to load, and seem to pause half way through – but if you’re patient, all should be well.

I really hope this works okay. 😊

It was easy to teach Ian the names of animals, to point to them, or ask him to give them to me. I decided – in my endless quest to increase / improve Ian’s language skills – to ask him to respond to the question “Which one …?” with the answer “This one!” I felt it was also important for Ian to be able to contradict me by asking him to point to something which wasn’t on the table.
Ian loved opposites, and I enjoyed this exercise because it incorporated reading, matching, and required him to know his opposites as well. In fact, the only problem he had with this task was slowing down!

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.”

Autism : From the Inside – Chapter Twelve

It was during these summer holidays that Ian attended a course of Auditory Integration Therapy, which aims to address the sensory problems such as hearing distortion and hyperacusis (oversensitive hearing). These are said to cause discomfort and confusion in people suffering from learning disabilities, including Autism. The hypersensitivities are believed to interfere with a child’s attention, comprehension, and ability to learn. “AIT is designed to improve the person’s ability to process sounds by ’re-educating’ the brain. This is done by playing electronically modified music or other sounds in which the frequencies have been changed”(1).

At first Ian seemed a little stunned by the sounds coming into his ears through the headphones. It certainly wasn’t music he would ever have heard before, and after being messed about with by the machine even less so, although he did seem happier when the New Orleans jazz track came on! However, he remained mostly silent throughout, at times almost stunned and he just sat, staring into space without moving.

Towards the end of the first week he became quite noisy, almost experimenting with his inability to hear his own voice because of the earphones. Because Ian couldn’t hear me, there was no point my trying to tell him to be quiet, so I wrote down on a piece of paper “Stop” and “Mouth Quiet”, pointing to my eyes with two fingers for ‘Look at me’, pointing to the paper for him to read the words, and then giving him a thumbs up for ‘Good’ when he quietened down again.

The speech therapist was astonished by this silent exchange of information, all of which had the desired effect, and in my head I found myself thinking Yes, my son can read, and yes, he does understand. Again, I was dismayed by the lack of understanding of the autistic mind, and the inability to see the working mind behind the eyes. “Push a bit”, I wanted to say, “You may be astonished by the results”.

For the first week, the AIT seemed to be working some kind of magic. I noticed that Ian was forming longer sentences than usual – instead of saying his usual “Juice please, Mummy” he was now saying “Ian want juice please, Mummy,” and he responded quickly and without complaint to requests which previously may have been met with some form of resistance.

However, the second week of AIT seemed to take him back to square one. In fact, he appeared to be experimenting with his autism, almost milking it for what it was worth, and there was a definite resurgence in certain iffy behaviours. I certainly didn’t appreciate the deliberate elbow into my throat, which Ian managed to deliver when I was brushing his teeth one morning. Ouch!

Ian continued to accept the headphones and sounds because he’s amenable that way, although he was keen for it to be over and he said quite clearly more than once, “Ian want ‘working is finished’ please Mummy”* – possibly his longest spontaneous unsolicited sentence yet. However, generally I felt that whatever had been achieved in that first week had been undone by the second.

Once Auditory Integration was over, our sessions returned to normal speech therapy.

During one of these sessions, the speech therapist had shown Ian an illustration of an animal with the query, “What is this?” – to which I somehow fully expected Ian to reply “Well, it’s a cardboard square bearing an infantile representation of a tiger, otherwise known as a flashcard or picture”. This rather mad thought ran through my head because I lived in a world of endless possibility with Ian, where what he actually did and what I believed he could do may not always coincide, but where the chance of them coinciding could never be ignored.

In truth, I believed that Ian stored his extensive knowledge in a clearly compartmentalised filing system, and the identification of any animal would be found in his brain in the general file “Animal”, and the information required could be retrieved accurately and swiftly by posing the alternate question “What animal?” Cautious to step forward and demonstrate, I showed the speech therapist that Ian would respond almost immediately to a question phrased this way, when he was taking up to twenty seconds to give an answer to her question ‘What is this?’

Then she presented him with an alphabet of plastic letters and he promptly set about lining up the letters to make the names of the various animals on the flashcards, one after the other : tiger, elephant, bird, lion, Cinderella … No, Ian! Focus!

Importantly, during the holidays a spark returned to Ian’s eyes which I hadn’t seen for a long time. There was a clarity in his sustained eye-contact, and I suddenly found myself loathe to send him back to the Autism Unit where I knew they would not only not notice the spark, they would extinguish it.

(1) http://www.researchautism.net/interventions/4/auditory-integration-training-and-autism

* The phrase ‘working is finished’ came from the early days when we were teaching Ian sign language. At the end of each therapy session, the therapist would say “Working is finished!” giving Ian the hand sign for ‘finished’ as they said it. Ian latched onto this, and never forgot.

Autism : From the Inside – Chapter Eleven

What struck me first and most strongly was the fact that neither the teacher nor the Special Needs Assistants expressed any interest in what Ian already knew. I couldn’t understand this. Why didn’t they ask me? I had told them he had been in an intensive home programme for several years but not once did anyone ask me what he had already learned.

To be honest, at the time I found this quite sinister.  In retrospect, their arrogance was stunning. In their minds, I was just the mother. I couldn’t possibly understand the things they knew.  After all, they had all been on Special Courses. They held Degrees! They were Masters of their own Universe!  *

I tried to be kind. They appeared, on the face of it, to be good people trying to do the best job they could, and yet … Surely, no teacher in the world accepts a new pupil without at least some idea of what that pupil already knows? Why should it be any different just because he has special needs?

I got the strongest feeling that they felt threatened by me and they seemed to be deeply secretive and protective of their teaching programme and their teaching methods.  **

I told myself I was being over-sensitive, however, and decided to give them a chance. In the meantime I would watch and wait.

———

When Ian finally started school, the teacher I had met at my interview with the headmistress was away on leave and would remain so for many months to come. In her place was a new lass; a friendlier young woman who had some experience teaching typical kids but was new to the idea of teaching autistic children. She appeared to want to listen to me and took to heart some of what I told her about Ian. As she would be in charge of Ian’s schooling, I spent a lot of time encouraging and nurturing this wonderful person, this beacon of light in otherwise murky waters.

It was thanks to her that Ian settled in well and seemed to be enjoying himself. Because he was happy, I convinced myself to back off and give him space.   

Around this time I wrote to Ian’s erstwhile tutors in South Africa –

Ian’s teacher and I keep in constant contact either through notes or discussion, about the things he’s done or not done, and how best to work at them. He’s still not being pushed adequately at school (in my opinion), and far too much allowance is made for his autistic mannerisms, which means that instead of receding, they continue in full force.

Ian is doing well enough at the unit, seeming to still enjoy it, learning as little as they will let him get away with. He gets away with a lot, with the result that he learns little!

His teacher is doing what she can but she often seems puzzled by Ian’s changeability from one week to the next, his constantly altering behaviours and his one-step-forward-two-steps-back approach to life. I’m encouraging her as much as I can, and help Ian with his ‘homework’ on a daily basis which keeps me in touch with what he’s supposedly learning, and gives me an opportunity to push him in a one-on-one session at home before his brother gets home from school and we settle down to Rory’s slightly more taxing homework.

One of the things Ian’s getting better at is colouring in – at least he seems to understand that the colour should stay inside the lines, but the downside of this is that he’s tending to use his pen in short straight strokes, which doesn’t help him when it comes to writing. In steps Mum, who makes him scribble in wild circles, which seems to improve his confidence and strengthen his pen-holding technique.

At school his teacher makes him join the dots to form a page of the letter ‘C’. At home I make him write the whole alphabet free-hand …”

However, as the months passed, Ian’s behaviour began to deteriorate almost by the week.  He had been thoroughly enjoying the freedom offered at the unit, but his clever mind was now bored, and this began to show in his behaviour.  

In the early days of our intensive therapy programme we had found that no sooner had one nasty mannerism been brought under control than another would rear its ugly head. We fought our way through them, one by one, until Ian reached a stage when he didn’t seem to need them any more. This was the time when I felt he was ‘as near normal as it was possible for him to be’, because without his autistic hand flapping, face pulling, finger twitching or posturing, he behaved like any other kid.

Now, in the absence of any intellectual challenge, any check on his autistic behaviours, and thoroughly bored at school, these mannerisms were all re-surfacing. Not one by one, but together.

But I was desperately trying to fit in to this new country, trying to accept a new way of doing things and, anxious and more than a little depressed, I started second-guessing myself. I had been patted on the head with ‘there, there, she’s just his mother’ once too often, and got to the stage where I almost believed it. I began to question whether I really knew what was best for my child. However, in the absence of any real, concrete help in which I could believe, it was easier to back off and let the professionals get on with it.

The downside of this, of course, was that Ian’s behaviour continued to deteriorate. All his oddities returned in full force, all the mannerisms, all the self-chatter, the weird facial expressions.

It seemed that at the school they regarded ANY response from Ian as a good sign, with the result that they ended up re-enforcing the wrong behaviour constantly. By way of example, I learned that he had spent a good deal of time one afternoon singing with one of the Junior Infants (they integrated once a week), repeating a phrase from one of his favourite videos – the song Everybody Wants To Be A Cat from the AristoCats. Over and over, the same lines. And when the little girl stopped singing, Ian would take her arm and sing the line to her, thereby initiating more repetition of the same thing.

Ian was brazenly self-stimming – indulging in the most wanton, unnecessary autistic behaviour, which we (the therapy team in South Africa) had taken months to diminish – and this was regarded as a coup of some sort, a ‘meaningful sharing of time’. I wanted to weep!

They worked on his reading, his writing and ‘maths’ (merely counting ‘how many?’) without concern (understanding?) for the lack of foundation for the work they did. They followed the curriculum set out for “Learning Disabled Children” (that’s disabilities across the board) and were happy that Ian could accurately trace a whole page of the number ‘1’, and read to page sixteen in his set workbook, even though he didn’t comprehend a single word of what he was reading about.

Nothing was real, nothing had meaning for Ian in the greater scheme of things. Everything we had worked so hard to achieve was evaporating, disappearing like smoke on a windy day.

Any why didn’t I say something?  How could I, of all people, NOT say something?  

I gnawed on this issue for days, knowing full well that there was no way for me to change the minds of people so set in their ways without precipitating a major confrontation, which – as long as Ian was still at school – I really didn’t want. And with the headmistress taking the ‘if you don’t like it, remove your child’ stance, it was a difficult position to be in. ***

However, when Ian came home at the end of the year with a crushingly disheartening school report – merely a list of the things the teachers had managed to get out of him, a testimony to their ‘success’ rather than a record of what Ian might have learned – I knew I had to make something happen. Ian’s behaviour had regressed even further, and I was genuinely concerned. ****

I tried to convince myself that these were good people doing their best, but what worried me more than anything was the precious months which had been wasted while these teachers stumbled around ‘teaching’ my son things he had already left far behind. And teaching them so badly that he had unlearned large chunks of what he already knew.

Something had to change.

* It wasn’t that they ignored what I might know, it was that they assumed I knew nothing. This was the first time in my life I had met people who saw my son not as a human being but as a diagnosis. He wasn’t Ian, he was Autism, and Autism was what they believed they knew. I wished the people ‘in charge’ would accept that every parent of an autistic child has read more about autism and researched more about autism than they ever will, plus they have lived with autism 24/7 sometimes for years before they even get near any help.

** Whenever I asked what they would be working on with Ian, the subject was avoided or I was just plain blanked.

*** Yes, she really did say those words to me.

**** This file was filled with pages and pages of the same three exercises, completed in the same way and with the same level of success every single day over several months. The same tasks again and again, with no progression and absolutely no challenge to Ian. I was simultaneously furiously angry and utterly depressed. I couldn’t understand how these people could not see the potential which literally shone out of my son’s eyes.

Autism : From the Inside – Chapter Ten

As soon as we were settled into our new home in this beautiful new country, I started collecting telephone numbers of people who may be able to help us with Ian.

My first port of call was the nearest school, which had an Autism Unit. I telephoned the headmistress there and, with some reluctance, she agreed to meet with me.

Filled with naïve optimism, I made my way to meet the headmistress of the school and the teacher in charge of the Autism Unit. This was one of the reasons we had come to Ireland, the opportunity for appropriate schooling for our son.

They were not pleased to see me. Their unfriendly faces were matched by tacit hostility towards me as I described the home programme we had in place for Ian in South Africa.  

Despite the fact that the unit was supposed to cater for six children, the headmistress kept saying it was full, even though I knew that there were only four children attending. Still, both she and the special needs teacher told me more than once that there wasn’t room for my child.  

I was puzzled and slightly shocked. I had expected them to be interested in Ian’s progress, to want to know about Ian and what he’d learned. Instead I found that they were uninterested in what we might have done and completely unimpressed by what Ian might have learned.

I somehow kept the smile on my face but left as soon as I could, pretty certain in my own mind that it was not the place I wanted for Ian. *

However, other than that school – and other schools like it, but much further away – there was nothing else. I made phone call after phone call, pleading in vain with people who should have been in a position to help me, but couldn’t. What I wanted for my child just didn’t exist. **

I ended my last call deeply depressed. I was no further forward than I had been when I started. Here I was, in a new country, knowing virtually no one, desperately needing help, and feeling very much alone.

On paper, Ireland was Nirvana for the autistic child. It soon became apparent that these smart pamphlets were almost works of fiction. 

There was nothing else for it. In the absence of something which I believed to be suitable for my son, I would have to continue Ian’s education at home, by myself.

So that’s what I did.  

I gathered together some of Ian’s books from his bedroom, an assortment of toys, plastic letters, pens and paper, and sat down with him in the lounge at the coffee table. I seated Ian on the footstool, and I sat on the couch or on the floor beside him.

I knew which words Ian could read, and so I made a ‘book’ for him combining words he knew with new words he could learn, drawing pictures and writing neatly on plain A4 paper and stapling the lot together. I placed the book in front of him and read the words on the first page to him. Then I pointed to the first word and waited for Ian to read it back to me. He did. I pointed to the second word, which I knew he could read too. I waited. He read. I knew Ian didn’t know the third word, but I pointed to it anyway and waited. Ian glanced up at me, so I read the word for him and asked him to repeat it. My finger was still pointing to the word, and it stayed there until Ian read it to me. Then we read those first three words again, and this time Ian didn’t hesitate on the third word. Yes! He had just learned something new. I turned the page and we carried on.

We worked like this every morning. Within a week, I could set aside my homemade book as Ian could now read it from end to end. We moved on to others.

With my help, Ian learned to read all his books, to write sentences, do bigger and more complicated puzzles, and spell the names of his favourite animals with his plastic letters. He seemed more than happy to work at home, and appeared content with me as his only teacher. 

His reading improved in leaps and bounds, his vocabulary was increasing almost daily and, once his work ethic was firmly re-established, he sat at the coffee table hour after hour, day after day, quite content.

This could not be forever, though. I just couldn’t see myself teaching Ian in perpetuity. So when two children left the Autism Unit at the school I had visited, and a place was offered to Ian, I rather reluctantly agreed to give it a go.

* If I was looking for enthusiasm, good energy, fun, and an upbeat learning environment, this Autism Unit was most definitely not it.

** In a perfect world, I had hoped to get Ian into a set up similar to the one we enjoyed in SA – into a group of younger children where he could benefit from acceptance without judgment, but where he would be guided by neuro-typical kids into a more ‘normal’ way of being. Young children are generally pretty accepting of another child’s oddities, before they acquire their own (adult-influenced) moral radar. But such a thing was unheard of in Ireland. I couldn’t even get Ian into a primary school class with (my) full supervision, on the premise that it would ‘distract the other children’.

Autism : From the Inside – Chapter Nine

We were finding life in South Africa a great strain. Both Neil and I worried constantly about the other’s safety, and together we worried about our children’s safety and also about their future. Many months of accumulated stress combined one day to force me to say out loud what I had for a long time been thinking: “I don’t want to live in this country any longer”, and to my great surprise Neil answered immediately, “Neither do I”.

But where to go? 

Obviously an English-speaking country was a prerequisite, but neither of us was keen on the usual choices – Australia and New Zealand, America and Canada, or the UK. English by birth, I knew that after so many years away from England I was no longer truly English and wouldn’t fit in as easily as many South Africans might have thought. In South Africa, I was obviously English; in England, perhaps less so.

When Neil suggested Ireland I was very surprised, but pleased too. Living in Durban, I had grown accustomed to an exotic, subtropical land, surrounded by strange and colourful wildlife and strange, colourful and lush plants. I sensed that Ireland, with its aura of romance and mystique, could provide, if not an equally strange and exotic life, then a comparably colourful one. The more we thought about it, the more attractive the idea became.

Neil visited Ireland for two weeks during 2001, attending interviews and having a look around a country neither of us had visited before. He returned home raving about the place!  He also came brandishing pamphlets, which he had picked up along the way, which set out the services available to an autistic child in Ireland.

We devoured these with great interest, reading with growing excitement about the number of State schools which had units specifically set up for autistic children. These promised one teacher and two helpers to every six children, and there appeared to be up to four of these schools in each area. In South Africa in the 1990s, we had been left to make our way entirely on our own. We had never imagined there could be such a variety of help anywhere in the world! Our imaginations fired up and our appetites whetted, we couldn’t wait to get there.

Lock, stock and barrel, we sold up and moved. My enthusiasm for this new venture was dampened only by having to leave behind my precious Border Collies, Meg, Queenie and Skye.

The flight to London was long, and Ian slept for only a few hours of it. Then, wide awake in the small hours, when most people had finally succumbed to an exhausted doze, he needed constant entertainment to keep him quiet. Not many would make allowance for a noisy child at two o’clock in the morning, special needs or no.  

Somehow I managed to keep him busy, going through our entire repertoire of table work, getting Ian to read, write, identify, clarify, draw and colour in – most of which he did incredibly quietly, but it meant that I had to be at the peak of my persuasive powers to keep him focused. Not easy at two, three, four and five o’clock in the morning. When we arrived at Heathrow, I was utterly shattered.  

Our landing at the airport was dreadful – we hit the runway with incredible force and I swear the plane bounced at least twice. Could this journey get any worse, I thought? Yes, apparently it could. Ian promptly vomited all down his front.  

I had no change of clothes for him and everything he was wearing was now quite disgusting.  Who carries a spare set of clothes for a six-year-old? Nothing for it but to strip him completely and dress him in my brightly-coloured, fair-isle cardigan, which reached his ankles and, buttons done up from top to bottom, made him look like a little refugee from Peru.  

It’s tough enough hanging around in an airport with a tired special needs child. Hanging around with a tired special needs child dressed in an eye-catchingly outrageous fashion takes a very thick skin. 

That day I found I had one.

Photo: Taken on the plane, during those few precious hours when Ian was asleep. Rory is drawing, and Neil is in the background, stretching his legs.

Addendum to this Chapter

What I hadn’t included in this story originally was that while we were at Heathrow Airport (in the UK), Neil disappeared. Rory, Ian and I had sailed through customs on our British passports, leaving Neil to go looking for a t-shirt for Ian.

We waited for him downstairs, but he never appeared.

I walked the entire terminal – with both children by my side, Ian still in my brightly-coloured cardigan – trying to find Neil. Backwards and forwards, backwards and forwards. There was no sign of him anywhere.

Hours later, with the time to board our flight to Ireland fast approaching, Neil reappeared, looking pale and shaken. The bastards at Customs had detained him and some officious little prick had grilled him for two hours, refusing to explain why he was being held, refusing to let me know that Neil was in custody, and refusing to make a single telephone call to verify the facts Neil was telling him.

It was an extremely unhappy experience for us all, and we couldn’t wait to catch our connecting flight out of the UK, and into Ireland.

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.