Poor Bill …

Perhaps I should expand a little on the story I told in my last post – Autism : The Jam Donut Theory.

I commented that by changing the ‘format’, the pattern of behaviour, something magical had appeared. But there’s more to it than that. Of course there is. There always is.

We occasionally find with Ian that he will become fixated on a tiny section of one of his movies, and say something – sometimes just one word – over and over. It can actually become a bit tiresome …

But it is crucial to realise that what he really wants is an answer. Just as Mary desperately wanted someone to say something other than their name when she asked her question to everyone, again and again.

Not just any answer, of course. The right answer, given in the right way …

I’ll give you an example.

Recently, Ian was stuck on the words “Poor Bill”. He said it a hundred times – he was even becoming quite sad, almost tearful.

This happens sometimes, and it’s distressing for all of us. We tried repeating the words, but that didn’t seem to be what Ian wanted.

The next time I heard Ian say it – when he was sitting in his bath – I took a flyer. I inhaled, in stages, as if I were about to sneeze –

“uh…uh…uh…”

I had Ian’s complete and riveted attention.

“Aatchooooooo!”

I fake-sneezed loudly, followed by an explosive sound – “ptshhhhhhh” – and a rising whistle as I looked upwards.

“Well, there goes Bill!” I said.

And then I copied the voice of Alice (from Disney’s ‘Alice in Wonderland’), and said quietly “Poor Bill…”

Ian was delighted, and smiled from ear to ear.

Of course, Ian knows every single one of his Disney movies by heart, word for word, from beginning to end. By some form of osmosis, Neil and I do as well. And in Ian’s life, that is essential. Because it means we can step in and alter the pattern, answer the question, or complete the scene, and thus alleviate the stress caused by rigid patterns of behaviour – or the distress caused by a scene that won’t leave his brain.

😊🤯🥰😉

I found the relevant section from that film on YouTube. Have a look. It’s fun –

https://www.youtube.com/watch?v=axgCYwOzHaA

It’s probably important that I share this again ….

I spent many long nights while I was home-schooling Ian, trying to come up with a way of explaining how I understood autism.

As a visual thinker, of course I came up with a visual way of answering my own question – I called it “The Jam Donut Theory”, and I have tried to create pictures (below) which will explain it to you in the same way I sketch it on a whiteboard and explain it to college students. (It really needs scribbling, but I’ve done my best 😉)

Here, the Jam Donut, blue dough, orange jam :

With the right kind of work, these ‘points of accessibility’ can become permanent channels, making it much easier to engage with the working mind within, potentially for the rest of that person’s life.

However …..

I always hesitate to include that last image, because it saddens me. That is a ‘worst case scenario’, and you can imagine the frustrations which might result.

******

Here, I would like to tell you a story …

Many years ago, when my son Ian was first in adult services, the center held a party for several different special needs groups.  There were many kinds of disability there, not just autism, and it was noisy and wild and wonderful.

At this party, there was one young woman – let’s call her Mary – who’s ‘thing’ it was to go around the room and shake hands with all the adults present, and ask them “What’s your name?”  

She came up to me and shook my hand. I remember it clearly. Her hands were small and soft and delicate, but she shook my hand firmly and asked her question: “What’s your name?”

I answered clearly so she could catch it, and then she went on her way, around the room again, asking her question as she went, each person saying their name exactly as they had before.

She came back to me.  “What’s your name?” she asked me.

I looked her square in the eye and with a smile on my face, I said “You know my name.  I told you.  Can you remember?”

Mary went very still, and I could see the cogs turning as she tried to remember. Many long seconds went by.

I didn’t move. I didn’t prompt. I stood quietly, and waited.

Suddenly her face cleared. “Fiona,” she said softly. “Your name’s Fiona.”

“Yes!” I grinned at her.  “You do remember.  Well done!”

After that, Mary wouldn’t leave my side.  I was her new BFF, and she clung onto me as if her life depended on it.  

The staff from the center were staring at us, and Mary’s mother seemed to become rather embarrassed by her daughter’s unusual behaviour, but I was in the zone then.  We – Mary and I – were sharing something special, and I wasn’t in a hurry for it to end.

But she was maneuvered away from me, and shortly after that I had to leave.  

It was only on the journey home I realized that perhaps for the first time in her life, someone had discounted the knowledge of all the things Mary couldn’t do, and had credited her with a working mind.

And her clinging to me like a limpet was her way of saying ‘thank you’.

I had no expectation that Mary would be able to answer me. I just took a chance. But if I had never taken that chance, I wouldn’t have experienced a moment of pure magic.

All it took was changing the format, and patience.

❤️

I had hand-drawn faces showing an emotion, and written labels to go with each one.

I limited them to Happy, Sad, Tired, Surprised, Worried, Sleeping, and Cross.

In the task in this video snippet, Ian has to read the word, match it with the relevant face, and then produce an approximation of the right facial expression.

Cue entertainment ….. 🤩 …. and listen carefully for Ian’s spontaneous “Do you need a tissue?” when I pretend to cry.

This book is available as a whole – and can easily be shared – at https://online.flippingbook.com/view/601632/

❤️

To my faithful reader in China,

I shared my book in its entirety for you, Chapters 1 to 24, plus Epilogue.

I do not know who you are, but I do know that you wouldn’t be able to get a copy of the book for yourself, and as you’ve been following my blog for a while, I thought you might appreciate knowing how our story began.

I hope you have found the book interesting. Perhaps you even found it helpful. I may never know. But it makes my heart glad that my words are being read on the other side of the world.

Stay well in these difficult times, and thank you for your support.

🙏🏻

The book is available as a whole at https://online.flippingbook.com/view/601632/ ❤️

I finished writing this book several years ago, and many things have changed since then.

After that disastrous January when our homeschooling programme fell apart, we coasted for many months. Ian spent his days at home with me and we passed our time together walking, shopping, going to cafés for tea, watching TV, reading, playing computer games, listening to music, and laughing. But of school there was none. Not in any formal sense. Ian learned quietly, obliquely almost, about life and his place in it. I continued to expand his word skills and did my best to keep him happy whilst at the same time keeping him awake, there, present and consciously participating. It was pleasant and comfortable for both of us.

And then a good friend who has a special needs child of her own sat me down and told me quite plainly that Ian needed more. Most importantly, he needed to learn to deal with his peers. Neil and I would not always be there, she said, and Ian had to be equipped to deal with a life filled with ‘his’ kind; he had to be able to deal now with a life beyond us. She apologised for being blunt, and I’m sure at the time I was disturbingly quiet and withdrawn, but only because I knew she was right. Ian had to go back to school.

So, we enrolled him in a Special School which had a class devoted to autistic children. It was a good place, welcoming and friendly, and the headmistress and staff were lovely people. But of course it fulfilled my deepest fears, didn’t it? What kind of example would be set for Ian when he spent every day faced with – and imitating – the behaviours of people like him, when that very behaviour was something we had worked so hard to modify? Confronted by the prospect of that, my heart was breaking.

On the other hand, for the first time in many years, I was free.

Yes, when the holidays were over and Ian went back to school, I did my little ‘Braveheart’ dance around the house, crying “Freedom!” to the silence. It was glorious, and I loved it. My time was my own.

What I had to learn to live with, though, was the guilt.

Guilt because I felt I’d failed him. Guilt, because for me, this was the easy option. Guilt even because I feared I wasn’t strong enough or brave enough to continue working with him myself, as I wanted to, because I believed it was the right thing for him.

– o 0 o –

Ian has been at school for several years now. He has grown up and become a man. He is so different from the little lad he used to be, it’s easy to forget. Now, children stare at him in the supermarket with a deep intensity, aware of his strangeness and unsure whether he’s to be trusted or feared. I see this and my heart is squeezed. He’s tall now and he remains strange. I’m not surprised they stare. How could they know my angel has a gentle soul and wouldn’t hurt a fly?

On the whole, Ian has coped well with school and participates in the many activities provided there. He enjoys his cookery and woodwork classes, and looks forward to being allowed to play on the school piano or the school computer. He isn’t pushed in any meaningful way, and because of this, of course he has regressed. He has withdrawn into his autistic self to a very large degree and although he can be drawn out easily enough, he’s a shadow of the bright child he used to be.

I remember how happy Ian was in his mainstream kindergarten class so many years ago, mixing with typical children of a younger age. How forgiving they were towards him, not yet fixed in their attitudes as to what behaviour should or shouldn’t be. How lucky we were to have experienced those few precious months in that beautiful environment, where Ian was growing and absorbing all that was good. What could have been achieved, I wonder now, if it had been possible for that to continue?

We will never know. Today, Ian is 18. He remains profoundly autistic. And yet… all the things he can do – his speech, his computer skills, his extraordinary and wonderful abilities – are ALL there because of the hundreds of hours the therapy team and I spent working with him, all those years ago.

Was it all worth it? Without hesitation, I can say it most definitely was. 

Would I do it again? In a heartbeat. 

Ruth was right all those years ago. The little shit was clever. He still is.

He is an amazing young man.

The End

It is many years since Ian was diagnosed, and so, after all this time, how does it feel to have an autistic child?

Well, there’s the social version that insists that you love him just as he is, wouldn’t change him for the world. And you smile as you say it and try not to look too brittle. But inside lurks the real, secret truth, which knows you’d change him in a heartbeat if you were given half a chance.

Having an autistic child feels … like having been wounded deep inside, like having been assaulted … violated … by nature. You can live with it, deal with it, even accept it to a certain degree, but there’s a hurt inside that never goes away.

The evenings are the worst, when the stresses of the day sit, accumulated and hanging around my neck. When bathing a growing child for the umpteenth time just stretches into endless future baths. When I can see myself, older, less strong and fit, still supervising the adult, the man, naked in front of me, still needing prompting to wash ‘those important little places’ as my Mum used to call them, still chatting to himself and not to me. Still relying on me absolutely, because in my mind’s eye I cannot see it any other way, no matter the hours of work I’ve put in teaching him to be independent.

And then that silent howl rises up from deep within and the tears stream, and I try to hide them because I don’t want to upset my child, but a gentle hand reaches out to touch the tears and a husky little voice says “Sad”.

It isn’t a question, merely a statement of fact. Tears equals sad. He’s learnt this.

Sometimes there’s concern behind it; mostly there isn’t.

The silent howl goes on, but somehow I control it and respond, “Yes, my boy, tonight mummy’s sad. Let’s have hugs”.

And I hold him close because he’ll let me, and I breathe in the scent of his hair, and remember the little angel sent from heaven just for me, and I cry.

But I carry on.

Is it self-pity? Loss? Despair? I don’t know. I’ve examined this wound from so many angles I’ve lost count, and even today I can’t say why it remains so fresh, as if yesterday was the day on which we were told our child was different, not some sunny afternoon so many years ago.

But there’s the good side, too. The little reminders of what a special child Ian is, when he takes my hand for no reason other than that I’m nearby, or when he climbs into my lap for hugs just because I’m sitting down. 

Or like the time he rushes into the kitchen, looks me straight in the eye and says “Mummy, come …” and I follow him to his bedroom where he’s been typing on his computer and he points to the words and tries to read what he’s typed, and I correct a rare spelling mistake, and such a happy smile spreads across his face because now he can see that it’s right, and he understands that it’s right, and he reads it again, because he can.

Mostly these days I am swamped by thoughts of all the things Ian can’t or won’t do, and all the things he still ought to learn; but if I manage to take a step back, I look at my strange, self-contained son and think how good he is, really. Okay, he doesn’t share much of himself, he doesn’t share his thoughts or his feelings, but he can express himself well enough. He can ask for what he wants or needs. He can make his displeasure known in words if he feels like it, and he can do many things for himself, too, these days. He has finally accepted that getting dressed in the morning is just another part of daily living. He chooses and carries books to the car to keep himself occupied on a journey. He clears his place at table after a meal. He still behaves impeccably when we go out together and is a quiet, well-behaved companion when we go shopping, pushing the trolley for me, reading my shopping list, finding the right aisle by reading the overhead signs, and taking correct items off the shelf. Quietly, he is using more language, more appropriately, to express himself.

Ian will always need supervision and help, and will always require guidance for so many things.  Full independence was our original goal but the arrow fell far short of our aim. He still has a lot of growing up to do, and there’s no way of knowing where Ian’s behaviour and abilities will finally settle. We remain optimistic. We still love him to distraction and will continue to protect him from the world for as long as we can.  

Despite everything, all the ups and the downs, all the stress and the angst and the suffering and the soul-searching, Ian has always been – and will always be – my little angel sent from heaven … just for me.

This is a particularly difficult period of time for me to write about. It seemed that everything I had worked so hard to achieve with Ian came crashing down all at once, leaving me feeling so utterly defeated I didn’t know how I would ever be able to continue.  

On the 28th of January 2007, I wrote a desperate email to my friends, Kirsty, Ruth, and another speech therapist friend, Deborah –

“How quickly things can change.

“No sooner were we commenting on the incessant wind affecting Ian’s auditory processing than the wind dropped, the sun shone again, and Ian’s behaviour took the most unexpected and violent turn for the worse.

“On Monday afternoon when Neil phoned me from work, I broke the news that Ian had spent one whole hour of that morning screaming at me, then he’d spent the next hour trying to hurt me, either with his head or his hands.

“In between screaming bouts and having to hold his hands down and avoid his falling head (which he aimed at my wrists – ouch!), Ian answered my questions promptly and accurately, and completed his worksheets well, even though his writing wasn’t quite as steady as usual. At the end of the most difficult morning we’ve ever spent together, Ian’s work record was a completely inaccurate reflection of his behaviour. My shoulder was stinging from the couple of times I wasn’t quite quick enough and Ian smacked my bare skin with his pencil, and my ears were ringing from his glass-shattering screams.

“Tuesday was not quite a repeat performance because I altered various things to avoid the usual pattern, but work wasn’t really on the agenda.

“On Wednesday we went out. Thankfully Ian was his usual well-behaved self in public.

“On Thursday, Neil was at home. He wasn’t feeling well and had decided that missing a moderately busy day at work by resting in bed would leave him strong enough to deal with Friday, a very busy and unmissable day. Halfway through the morning he came through to the kitchen and stood at the door watching Ian yelling at me, as he had for the past hour.

“Do you need some help?” he asked.

“Probably,” I smiled ruefully.

Interestingly, after Ian realised that his Dad was home, he stopped trying to hit me and I could finally let go of his wrists.

We battled through another hour with some almost pleasant, quiet moments – shattered by Ian’s screams the minute I opened my mouth to speak.

On Friday, we sat together in the lounge, just mother and son. Instead of asking him to read to me, I read to him, and he sat in my lap with my arms around him. It was a welcome relief just to be friends.

It’s strange how you find something in yourself you didn’t know you had. Last week I found a calm, quiet place deep inside me where nothing Ian did could touch me. I wasn’t affected by his noise, nor by his repeated attempts to catch me unawares with a hand-flick or a head-butt. My voice was soft and serene, and my composure couldn’t be rattled for as long as I wanted to sit and try to work with my child.

After those difficult mornings, I led Ian to his bedroom, quietly shut his door, and wandered through to our lounge to sit for a long, long time simply staring at our beautiful view, trying to work out what had happened to the gentle, loving, happy child Ian used to be.

Do I need help, Neil asked me. Oh boy, do I ever! The eleven-year-old autistic child is a force to be reckoned with, and I’m all reckoned out. I don’t have any answers to the million questions I’ve asked myself, but I do know that for Ian there has to be a time when education must take a back seat and just being a person, trying to keep a grip on his world, must be more important. Perhaps he has learned all he can for now and needs time to just be.

That’s all I wanted to say.”

The responses I received from my friends deserve to be included almost in their entirety because they were so beautifully written, so concerned, so wholly supportive, and so very interesting. From Kirsty –

”Dear, dear Fiona

How I wish I was there!! Just to give you a hug, make you a cup of tea and lavish support. Because you do sound so alone. And I understand that calm, quiet place deep inside where nothing Ian does can touch you, but I also know it’s a defence mechanism, and, though this may be hard to hear, it is ABUSE, albeit from someone who has a condition and has little other forms of power and control, and it will have the same effect on you as if anyone else you loved was trying to hit, head-butt and hurt you. I once worked with an eleven-year-old (til she was thirteen) who used to bite and pinch me when she got mad, and sometimes for no reason at all. I took it and took it and took it and took it. I developed that “calm, quiet place deep inside” where nothing could touch me. What was the result over time? Deep, dark depression that took me years to get over. And a willingness to let other children abuse me, again and again. It’s not right. And it’s not right to take it.

My instinctive advice to you is this: stop working with him. Take him for long, long walks instead, for a week at least. Show no interest in work at all. Give yourself a rest. If he tries to hurt you, walk out the room, go and do something else, give him no response at all. Don’t stay there and take it, with the excuse that he’s autistic. Please, please don’t, Fiona, and I almost have tears in my eyes when I write this. Please don’t take it, please don’t allow anyone to do that to you, even Ian. You don’t deserve it. It will erode you.

I send you a big big hug. I wish I was there to help you too. Please write and let me know how it goes.”

From my friend Deborah, I received –

“I love this e-mail you sent because I can relate to it so much and feel a deep empathy and understanding and knowing.

In my work with autism, I have known many children to go through these extreme behavioural patches. I, too, have spent hours trying to work out why, wondering if it was something I did differently in the therapy session or what it was that set off a sudden outburst or difficult period. Sometimes I find out and sometimes I don’t. It can be something in the environment but I do believe it can also be physiological – ups and downs, hormonal changes, emotional development, etc.

Children with autism have delayed emotional development and sometimes extreme behaviour at a later stage is due to this. Sometimes there is something physiological or sensory going on, sometimes it is something in the environment and sometimes we don’t know what it is!

Mostly these phases just pass and things are easier again.

Courage and strength to you.”

Ruth’s initial reply was short and typically Ruth – 

“My dear Fiona, Bloody hell … I’m SO sorry.”

I sent Ruth a copy of Kirsty’s wonderful email to me, and after she’d read it, Ruth wrote at length about her thoughts and feelings –

“Abuse? Yes. Depression as a result? Yes. Add to this an enormous dollop of guilt because ‘why would a child (however ‘dis-ordered’) hurt me unless it was, in some way, MY FAULT? So while Kirsty has experienced the depression, I experienced more along the guilt lines from interacting with Ian and many others (even though Ian never hurt me, I was consumed with guilt that I couldn’t just magically ‘produce’ speech FROM him – and FOR you). Whether guilt or depression, what is common, however, is the fundamental negativity of our responses.

So look at what you are DOING, Fiona – and see how instinctively you are returning to wonderful, positive interpretations of reality; walking with Ian for example – my goodness, how I remember Ian on our walks; how PERFECT our relationship was; how happy we both were. Instinctively, you know what to do to restore joy and balance in your lives. I guess my question is, why you would not think that working hard with Ian at ‘making you both happy’ is not an incredibly valid educational outcome – at least for now? Why not give yourselves the permission to work on this particular outcome and not to construct a time in your mind where you need to return to ‘table work?’”

Ruth’s reply to me led me to write a long and complicated email to her in which I expressed thoughts that had been plaguing me for months –

“Yes, when things go wrong with Ian I take it very personally, but I’ve learnt over the years (and remember, I’ve been working with him on and off for more than eight years now) that his behaviour cannot always be my fault. I have reviewed my own teaching style so often, I’ve been in danger of becoming as meaningful as a small puddle of water and sometimes I just have to get on with it. You did what you had to do with Ian, you believed in yourself, and you made him talk. I still believe to this day that if it hadn’t been for you he wouldn’t talk at all. So quit the guilt-trip, I’m not buying.

Many years ago (gosh, I remember it so clearly it could have been yesterday), you asked me “Do you want Ian to change or do you want him to be happy?” and these words have stayed with me ever since. You were absolutely right, you know. It’s really hard to keep them happy while you’re trying to help them fit into your world. It just doesn’t work that way, not in the long run anyway. But it certainly doesn’t pay to be negative about it. That way lies madness.

My latest malady – for want of a better way of putting it – is the end result of all this schooling. Here we are in Ireland, where the State is doing its best to ensure that these autistic children get some form of education – they’re even being fussy about the kind of education they’re getting (as if they have some Master Plan) and who they’re getting it from (I’ve been told I’m not an appropriate teacher for Ian because I hold no formal qualifications), and I’m sitting here saying To what end? To what end all this education? Could we be preparing these children for a future that doesn’t actually exist? And isn’t that the unkindest thing we could possibly do?”

I found myself chasing my tail at this time, worrying about how to teach Ian this and how to approach that without Ian launching himself at me. I was tying myself into a knot with concern about all the things I felt he still had to learn, repeating the words, “I have to teach him … I have to teach him …” and then Neil looked at me with his beautiful, calm eyes and asked me one simple question:

“Why?”  

I was halted in my tracks.  

“Because,” I countered, “because…” and then I realised I didn’t know what the ‘because’ was.  

In his gentle voice, my husband continued, “Surely keeping Ian happy is more important right now?”  

And I knew he was right.

So school was abandoned. We went for long walks together and Ian was finding pleasure in his books again. I had temporarily disconnected his computer because he had been refining his computer pictures down to one single image, which he reproduced over and over again, and this image seemed to make him angry. When he asked for the computer I told him firmly, “No computer, Ian. It’s broken.”

And how was Ian through all of this recovery period? Well, it was a little like walking on eggshells for a while. Some days he was angry and noisy, others angry and quiet, and on other days he was good, sometimes even loud but happy, which was a great improvement. Occasionally he smiled too, which was wonderful. Things seemed to be improving. We had some great walks, even though the weather was still cold. However, it was dry and walking our country roads was very pleasant indeed.

Slowly, things settled down.

Ian was still hugely resistant to formal schooling when I dared to try it again but I had other tricks up my sleeve and managed to teach him new things without him even realising he was being taught. We started painting together, too, and I re-introduced him to the idea of modelling with play dough. We walked the neighbourhood flat, which was good for us both, and Ian seemed to enjoy being out and about so much.

He remained exceptionally well behaved when out in public – enough to convince me that his resistance was aimed solely at me – which meant that we could still do the shopping together with no trouble at all. I had always believed that how Ian behaved in public was as important a part of his education as how or what he learned in school, and I was grateful that this part of him had not changed.