A parent’s thoughts on autism – an interview

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What age was Ian when he was first diagnosed with Autism?

Ian was just over two and a half years old when autism was first suggested. This diagnosis was finalised over the next couple of months – not that we had any doubts by then.

When did you begin to feel that Ian may not be progressing as quickly as other children his age?

I felt that Ian was behind by the time he was one year old. Of course, I had only one other child to compare him to, and our other son, Rory’s milestones were on the early side so it was always an unfair comparison. But there were other things as well, things which were more subtle, more to do with the way he was, his isolation, his lack of engagement, the way he played, etc.

What thoughts went through your mind when you were originally told of Ian’s diagnosis?

Initially? Probably very few! Shock, of course, but relief too. I’m a fighter, but you can only fight effectively when you know what you’re fighting against. The emotional response kicked in later. Coming to terms with something like this, a diagnosis like this, can be a slow process.

I am aware that you spent some time living in South Africa, what country were you living in at the time of Ian’s diagnosis?

My husband is South African, and both my boys were born there. That was where Ian was diagnosed.

What spurred your decision to move back to Ireland?

I love that Irish people always assume we have moved ‘home’, it is a beautiful thought, but neither of us has any Irish roots at all. We moved here because of an interest in Irish history, a desire to live in a safer environment in which to raise our children, and because we knew that Ireland was a visually beautiful place in which to live. We haven’t been disappointed in that at all.

When it was time for Ian to begin school, did you have difficulty finding a school that would be suited to his needs?

Initially, we didn’t go down the school route at all. We implemented an early intervention programme in our own home, starting before Ian turned three. We kept this going for about two and a half years, and Ian made enormous strides, intellectually, verbally and socially. About six months after that, we moved to Ireland.

What age was Ian when you made the decision to remove him from school?

Ian was six when I first home-schooled him in Ireland, simply because there was nothing else available for him at that time. When a place became available, I sent him to an Autism Unit at a nearby school.

What was the basis behind your decision to remove Ian from that school?

Mostly because Ian regressed. I knew he needed more than was being offered. I had seen the joy Ian took in a particular style of learning, and even just from the act of learning itself. The autism unit seemed determined to treat him as if he were … not mentally competent … when I knew my child had a working mind in there that was open to learning. Ian loved knowing stuff – how can you deprive such a child of the opportunity to learn more? I couldn’t, so I took it upon myself to teach him.

How many schools did Ian attend before you made the decision to remove him from school?

Just the one. It was enough.

There is no doubt that home schooling any child is hard work, what did home schooling Ian entail?

You want a blow-by-blow? We would go into our ‘classroom’ together and sit at the table, and I would offer Ian his work for that morning, work sheets I had devised which might encourage him to think, participate, and speak. And he would read to me, and learn new words, and answer questions. And we would play games, and count, and do exercises, and name things, and draw, and write, and cut paper, and thread beads, and ……. Do you want me to go on? What should ANY child learn in school? Those are some of the things we did. And we laughed. Ian is funny, he has a highly developed sense of humour. He made me laugh a lot.

How many hours a day did you spend specifically working on his education?

We usually did about three hours, but it was pretty intensive. He had breaks, ‘time-out’s between tasks, when he got to look at a book or play his keyboard or line up toys, or just jump about if that’s what he wanted to do, but they were short – in intensive one-to-one there’s no time-wasting like there is in normal school. Everything was focused on Ian, and keeping him present, listening, talking, paying attention. Intense, as I said. Three hours of that and you feel it. But it is so rewarding, and with each reward comes new energy, a new desire to continue.

Did you ever struggle to keep a balance between Ian’s education and your day-to-day family life?

Yes and no. I was very aware of it. Ian’s education pretty much swamped my thoughts, both day and night, but I was careful to be mummy too. There was ‘school’ and then there wasn’t school.

When did you begin to see that Ian was making much more progress than he had been in school?

Oh my word! You could see within a week! Just focusing on him properly, and giving him the time to answer properly, expecting him to answer properly, made a huge difference to him. Ian loved to learn, he loved knowing stuff, and he loved being able to give the right answers. And I would cheer and clap, and he would grin from ear to ear, sometimes laugh at me. We had lots of fun. I think teaching autistic kids should be about the child being quiet and the teacher being noisy – encouraging and praising. And there should always be laughter. Lots of laughter.

Can you explain your feelings when Ian began to talk?

One thing you learn as the parent of a child with special needs, you recognise a miracle when you see one, and you accept it as exactly that: a miracle. It is huge, and humbling, and emotional. The first time Ian greeted me, on his own, in his own way, well, I cried. It was really quite over-whelming.

What stage is Ian’s speech at now?

Ian has thousands of words in his head, but prefers not to use them. That is his choice. I respect that; sometimes I don’t want to speak either! Mostly he uses language to ask for what he wants – he likes being able to do that. If you can ask for stuff, you get stuff! But he USES language, which he wouldn’t have done otherwise. Sometimes we have conversations. They’re a bit strange, and often very short, but they are proper conversations. It’s always a joy when that happens.

Do you think your method of educating Ian is the way forward in autistic education?

That’s an awkward question to answer. Every autistic child is so utterly individual – what’s it Hans Asperger said – ‘If you know one child with autism, you know one child with autism’? However, I do think it is necessary to move autistic children away from the syllabus which is currently being used and which is geared towards disabilities across the board. Autistic children are not the same as Down Syndrome children, nor are they brain damaged. They are unique. And there must be progression in their teaching – when I was working with Ian, if he answered a question correctly three or four times, he knew it, and I moved on, generalised it or increased the challenge or changed direction. Seeing Ian’s file from the school he attended with a year’s work in it, and it was merely the same few tasks over and over again, day in and day out, for a whole year, made me utterly depressed – and angry too. Where was the progression? Where was the challenge? Where was the child’s mind, in this sea of nonsensical repetition?

I wouldn’t say ‘my way was right’, not at all, but I do think there needs to be an attitude shift towards a greater recognition of the working mind within the autistic child.

When did you make the decision to write about your experiences in a book? Did it take you a long time to decide you wanted to share your experiences with the public?

I wrote the book seven years ago. I had been thinking about it for a while, and when I finally sat down to write, it poured out of me in just two weeks. I don’t think I ever really focused on ‘sharing my experiences with the public’, I just hoped that my book might inform, and hopefully help. If I have helped even one person, helped them to think differently, or helped change the way they approach an autistic person, then I’m happy.

I’ve been informed that you are currently writing a blog? Can you tell me a bit about the blog itself and the content?

The blog is really to expand on what’s in the book, and to share some background information, my thoughts since writing the book, and things which aren’t in it. It alternates between reminiscing and informing. Always, I hope to guide people towards a better understanding of the condition, of the idea that we always treated Ian like a normal kid with a few strange behaviours. I feel really strongly that people in services treat the condition, and not the child. I find this abhorrent. My son is a person, he is not ‘autism’, and he deserves to be treated like a thinking person and not a diagnosis.

What is your opinion on the Irish education system and its support for Autistic children, and how do you find Autism awareness in Ireland?

The thing that breaks my heart is to read about parents being kept waiting for services. Everybody knows now, early intervention is the way to go – but being kept waiting for months, even years, makes a mockery of this. Nobody wants to be told they have to take the reins of their own child’s education – heavens, this is a welfare state, one has a right to expect appropriate help! But when that help doesn’t come, what can you do? I hope that my book might encourage people to realise that they know their child best, and that you don’t have to be a professional to make some kind of a difference. Any difference is a difference, if your child just learns to sit quietly for a few seconds, or point to something, or glance at you when you say his name, or finish a puzzle, or sit with you while you read a book … Any small thing is a step forward and worthy of a cheer. It doesn’t matter what it is. The next day you hope for another small step, and then another. And so on. There’s no ‘big picture’ here, just a succession of small steps. I’m just a mother who loves to teach, but I did it because I believed it was the right thing to do for my son, and I managed to make a difference to him, and to his life. I have no doubt there are other people out there who could do the same for their own children.

Generally, people in Ireland know about autism – these days I think everyone knows someone who has an autistic child, if it isn’t directly in their own family – but understanding what it means is hard to explain. My son is 19 and he behaves like a child. BUT he’s 19, and I can never forget that. You cannot treat him like a child because he’s not a child. There’s a duality there. Behaviour is just behaviour, it isn’t the core of who he is.

Thank you, Fiona.

You’re most welcome.

blog - curlicues“From the Inside – Raising, teaching, loving an autistic child” is available in paperback and ebook directly from the publishers, Emu Ink Ltd (emuink.ie) or a an ebook on Amazon.

Scrapes and bruises – Asking that awful question.

It’s a difficult one, isn’t it? Your child comes home from school sporting a mark you know wasn’t there that morning. Do you say something? Do you make a fuss? Do you let it ride, and wait and see?

As a mother, I find this a real problem area. I used to be inclined to shoot from the hip and ask questions later, but friends have been lost that way so I’ve learned to be a bit more circumspect. When it comes to my children, though, I tend to be pretty reactive. Thankfully with Ian, I have never had to make a big song and dance about such things, but …

… the four distinct circles, the imprint of someone’s fingers in the soft skin under Ian’s upper arm, deep bruises left by somebody who had grabbed him too hard? Those I noticed. Those made me frown. He was at school then. Yes, I know he’s a runner, and the people who cared for him day in and day out were terrified of letting him get away from them – and justifiably so – but steady on, no need for quite so much force …

… the bruise on his back, low down and deep blue? I wasn’t happy about that one, either. Did he fall? Did he back into something? Was he pushed …?

I didn’t ask about those. Or about other marks I’ve seen, over the years.  I hope that doesn’t make me a bad mother, for letting most of them go.  Boys will be boys, and carers can’t be everywhere, all the time. And no matter how carefully they are watching, stuff gets missed. That’s just a fact of life.

So, when should you speak out?  Well, I suppose it comes down to patterns of behaviour.  Ian got away from me once, years ago, in our local village.  He was stopped and looked after at the hairdresser’s, and by the time I had tracked him down, the police had been called.  The officer was understanding and kind, but he took all my details anyway.  In case a pattern of behaviour emerged.  Thanks.  I have a child who likes to run away.  That’s his pattern, not mine.  Now I live in Colditz, behind tension wire and locked gates, because my child’s pattern of behaviour does no one any favours.  Hey ho.

But for scrapes and bruises which appear during the day, when your child is away from you – especially those which are not generally visible – do you speak out?  Maybe.  Perhaps a gentle question in the right ear, just to say that you saw.

I notice everything about Ian, of course, even the bits that are generally covered up, because I still assist him with his bath in the evening. No, wait, what’s the word these days? Facilitate. Such a lovely ‘hands-off’ word, for a child who will always require people to be rather hands-on. In the past, I have pointed and gently touched a bruise and asked Ian, “What happened?”, but each time he’s just looked at me. The connection between the question and the injury didn’t occur to him.

As a parent, the frustration of dealing with this is huge. I know Ian feels pain, and over the years we have taught him to point to places that hurt, but this only really works when we can actually see an injury. It becomes a magnificent guessing game when Ian intimates that something is amiss, and we ask him to point – “Where’s sore?” – and he points vaguely to the last place he had hurt himself, because he remembers that we responded to that.

Ailments often come to light only through observation. Is he resting his head in his hand, covering his eyes? That’s a headache. Is he pressing on his stomach? A tummy bug. Or indigestion. Or constipation. Or wind. And those sore spots on his feet? Ah, he did those himself the other night, picking off tiny pieces of dry skin, but at least he asked me for a plaster before putting on his socks in the morning.

It will probably always be an area of difficulty, as it is for the parent of any child, but for the parents of part-verbal or non-verbal children with special needs who are always on high alert anyway, it is a minefield.

When to ask?  When to let it go?

Ah me.  Just one more thing to have to worry about.From the Inside – raising, teaching, loving an autistic child” available in Paperback and as an eBook directly from the publishers http://www.emuink.ie – non-fiction – and as an eBook on Amazon

Autism vs Intellectual Disability – a changing viewpoint

Today is World Autism Awareness Day. We need a special day, because there are so few children with autism, it could easily be missed…

Oh all right, I won’t go all sarcastic on you. Instead, I’m going to challenge you. You see, it has been my experience – all nineteen years of it, as the mother of an autistic male – that all autistic people, nay, all people with special needs, are, almost without exception, approached by professionals and others who ought to know better, in a very specific and particular way :

Firstly, by their diagnosis;
Secondly, with the assumption of intellectual / learning disability;
And thirdly, as a person.

Those who say they won’t, will. And those who think they don’t, do.

How removed we are from our instinctive understanding of each other, that we struggle to connect with another human being, mind to mind, energy to energy, before our assumptions take control of us, before we intellectualize things.

What if autism were dragged away from the psychological forum, and the child approached as if there was nothing wrong with his mind, he just had a mass of odd behaviours to negotiate? Would we think about autism differently? If we stopped assuming? Like assuming that a blind person needs to be spoken to in a louder voice, or that a deaf person doesn’t know what you’re thinking just because they can’t hear what you say?

My challenge to you is this: Wherever you are, whoever you are, if you come into contact with someone with special needs today, turn the whole thing around. Discount the notion of intellectual disability. Try to make that connection, working mind to working mind. Energy to energy.

Perhaps if I tell you a short story, you’ll truly understand what I mean…

The other day, I attended a concert at my son’s day placement. There were three different placement groups there, with a variety of diagnoses, from brain damage to genetic impairment to autism. A whole host of people with special needs.

A young woman approached me and took my hand. I remember her hands particularly, because they were tiny. Delicate cool little hands. She held onto me and asked me my name. That was her thing: to go around the room and ask people “What’s your name?”, over and over. I told her my name, enunciating carefully so she could hear it, and she repeated it after me, then left and continued around the room. I heard her as she went, “What’s your name? What’s your name?”

Five minutes later she was back in front of me, taking my hand. Again, she asked me her question.

I looked at her directly, and quietly said, “You know my name. I told you. Can you remember it?” And then I withdrew my ego from the interaction, and waited.

She went very still. Her mouth worked a bit as she stared off into the distance. After a full minute, maybe more, she breathed “Fi-o-na”.

“Yes,” I smiled at her. “You remembered.”

And she beamed from ear to ear, fully aware of the magic that had just happened.

After that, she wouldn’t leave me alone! Her mother became embarrassed by her daughter’s clinging, but I was ‘in the zone’ then and didn’t mind. Comments were passed around the room. Everyone noticed my limpet with the little hands, holding on to me and dragging me around.

Sadly, she was manoeuvred away from me, and shortly after that we had to leave. It was only on the way home I realised that possibly for the first time in that young woman’s life, someone had ignored her disability, set aside the assumption of what she couldn’t do, and credited her with a working mind.

And she clung to me like a limpet, which I think may have been her way of saying Thank you.

Today, all I ask is that you to be aware, and perhaps, if you can, make that connection.

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Once upon a time … Keeping the autistic child safe

Once upon a time, there was a man who had a beautiful dog named Sonny.
Sonny was well trained and well-behaved; such a credit to his owner. However, well-behaved Sonny had one bad habit: when the wind blew, he liked to chase leaves. If a leaf skittered across the ground, Sonny would bound after it, and try to catch it. It was his only bad habit, though, and the man was so very careful to watch Sonny, and to keep him close when the wind blew.
One day, the man took Sonny into the town. It was a calm day. The sun was blazing in the sky, and birds were singing in the trees. A day for shirt-sleeves and happiness, and for showing off how well-behaved his Sonny was.
The man walked proudly down the main street of the town with Sonny walking quietly at heel beside him, perfectly placed, his head at the man’s knee. How good his dog was, the man thought, enjoying the freedom without a leash in his hands. How content he was inside himself, reaping the rewards of all those hours spent teaching his dog to behave.
Along the street, the man saw someone he knew, an old friend who smiled and called to him. And at that moment, as the man’s attention was moved by this happy sight, a stray breeze lifted the rubbish in the gutters of the street, and a single leaf was wafted free.
Sonny died that day, while his owner’s head was turned … for the sake of a moment’s inattention and a single leaf dancing down the road.

It’s a heavy-handed analogy, I know. But it came into my head the other day as I sat before two men and was forced to justify why we keep Ian’s bedroom door locked at night.

These men who, to the best of my knowledge, haven’t raised a child, let alone a child with special needs. Who sat there, presuming to judge me, heavy lidded eyes, with false smiles plastered on their faces. Quick to reassure me that I wasn’t being accused, while at the same time, their very insistence that the meeting be held a blatant accusation…….

I have stood in an empty road, and looked this way and that, and felt that hollow terror in the depth of my soul. With no way of knowing which direction my child had gone, or which way would be the best chance of finding him. A child with no sense of danger; no sense … of anything that would put him in harm’s way.

And I had to sit in front of two men, and justify my actions. These men who had never felt that fear. Who would never feel that fear.

We started locking Ian’s door at night when he was five years old. We found him wandering around the house in the small hours. Into everything. With access to anything. Knives. Matches. Keys … You can hide what you like, but the autistic child never misses a trick, and will sniff out your secret hiding places like a mink after a vole. Alone around the house. While you sleep.

No.

Ian needed to be safe. WE needed Ian to be safe. In his room, next to ours, where he had his books and his toys, and his bed.

So we lock his door last thing at night. If he needs us, he knocks, and we answer. But otherwise he is safe.

Because in our world, a moment’s inattention could cost Ian his life.

And I had to sit in front of two men.

And explain myself.

From the Inside – raising, teaching, loving an autistic child” is available in paperback and e-book from emuink.ie

Sometimes we all need a hug

for blog - ian climbingIan has never been afraid. Of anything. He would climb the Eiffel Tower the hard way if he was given half a chance. Height was something he desired, not something he was wary of, and as a toddler, he would climb on anything. Yes, I know, all children love to climb and jump; it was just the lengths to which Ian took his obsession that were extraordinary. He would climb the door frame, right to the very top, and stay there as if it were the easiest thing in the world.  It terrified guests when he would run – run! – along the back of the couch, a surface only two inches wide and more than three feet off the ground. Or climb onto the head of his rocking horse and stand there, rocking, whilst reading a book… He had the balance of a cat, and like a cat, he would want to be up there, on top of something.

But when Ian was a toddler, once he had achieved his height-of-the-day – preferably at least five feet off the ground – he would look for me. And the minute he had my attention, he would launch himself, totally trusting, completely unafraid, straight into my arms. Sometimes across yards of empty space. I was strong then. I caught him easily, hugged him tightly, and spun around, swinging his legs through the air. He loved it.

Once Ian started to speak, he was quick to fix a phrase on this favourite activity. “Catch me!” became part and parcel of our days. I had to be prepared, always. He was good, he would wait for me to put my arms out to catch him, but sometimes he was in a hurry and I had to be quick. Every time I caught him I would hug him tightly, and say “I’ve got you!”, and we would laugh together.

Then, of course, time passed, and Ian grew. “Catch me!” became harder as he became bigger and heavier. Instead of catching him in my arms and hugging him tightly, the catch had to become more of a controlled swing, guiding him towards a safe landing on the ground. An assisted jump, with me protecting my fractious spine.

Then he got even bigger, and I could no longer catch him in the air. The game had to be stopped. If Ian climbed up onto something and called “Catch me!”, I would walk away, and he was quick to climb down again. Autistic, not stupid.

Over time, the game morphed into something a little calmer, more to do with connecting, with making contact, than with actually being ‘caught’.

When I walked into Ian’s bedroom this morning, he greeted me with a very cheerful “Good morning, Mummy”, quickly followed by “Catch me!” and he threw his arms around my neck and gave me a big hug.

I responded with the required “I’ve got you!” and hugged him back with a tightness in my throat because it was a good morning, this morning, when Ian was bright and his eyes were clear. When the greeting came from him before it came from me. With eye-contact, and a smile. How changeable he is.

Later, Ian was sitting at the kitchen table eating his breakfast toast and I was on the other side, writing in his daily notebook.  Suddenly, he flung his arms across the table and said “Catch me!” again, and I gripped his hands tightly and responded “I’ve got you, my boy!”, and we shared a smile.

After Ian had left for his day placement and I was walking the dog through the gnarled trees in the forest, I found myself thinking about this strange sequence.

Catch me! – I’ve got you!

Ian is nineteen now.  Long gone are his days of flying through the air into my arms.  For him, it is enough that I catch his hands and squeeze them tightly, and smile at him, and say “I’ve got you”.

But on a special day, “Catch me!” is the signal for hugs.

Today is a special day indeed.

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From the Inside – raising, teaching, loving an autistic child” – available in Paperback and eBook from Emu Ink.ie

The Autistic Child – inclusion or exclusion?

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This is possibly my most favourite photograph of Ian, ever. It shows him interacting with two children who were two years younger than he was. Ian was 6, and they were both 4. At that time, and in that place, inclusion was perfect. Ian had undergone three years of intensive one-to-one therapy; now he was just a child, in a sea of children. A small sea, admittedly. Well, as there were only about eight of them, perhaps more of a jolly, chuckling puddle. But Ian slid in without a ripple, and they all got on very well. As I wrote in my book “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. Ian learned the give and take of normal play.”

These were children who had not yet formed their opinions as to what should or shouldn’t be, and also, as it happens, children who were not exposed to endless hours of mindless television or video-games – but that’s another argument. These were children who were open to Ian’s difference, children who were parented with the almost forgotten art of gentleness. I believe that had Ian stayed within that group, he would have been surrounded by children who would have formed a protective barrier around him as they all grew up together.

What one finds, however, with most attempts at inclusion, is that the child – no matter his disability or mental age – is put in a classroom of children the same age as himself, as if that should work. Oh, they’ll just get on? No, they just won’t. The autistic child has enough battles to face just getting through every single day, without having to endure peer-related aggravation.

What if special needs children were routinely mixed with younger children? What then? Who would it hurt? Ian didn’t know the children in his class were younger than himself. And even if he did know, he didn’t care. Is there such a stigma attached to a child being ‘held back’ that a parent might insist their child was thrown in with their peer group? I doubt it. And if an autistic child of five or six was mixed with three- and four-year-olds – children who are, as I wrote in my book, “not yet fixed in their attitudes as to what behaviour should or shouldn’t be” – what a huge benefit, not only to the autistic child but to the others as well, in learning to accept?

Watching Ian blossom during this time, I realised that mixing an autistic child with typical kids of a younger age represented the very best that could be achieved. Certainly for Ian it had done him 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.

There are other advantages to inclusion as well, and these centre around imitation. All children imitate the behaviour they see around them, good or otherwise, and this applies to autistic children just as much. I would rather home-school my child than have him bullied by normal kids because of forced inclusion with his own age-group, and I would rather home-school him than have him imitating the iffy behaviour of other special needs children. But that brings us neatly to the thorn-infested field of socialisation.

It must be the question most often asked of parents who choose to home-school their child: What about socialisation? Well, the most obvious answer is, that depends on your view of what constitutes socialisation. Mingling with people? Getting on in the wider world? Being able to stand up to your peers when they come at you in a group, intent on harm…? Home-schooled children often spend more time in the wider world, and learning from the wider world, than their peers, but have done so from an environment of safety. How can this be wrong?

Of course, inclusion may give the parents a skewed reality. In her excellent article on Facebook (http://phoebeholmes.com/2015/01/16/sometimes-inclusion-isnt-the-right-choice/), Phoebe Holmes writes “…inclusion can give this idea that your child, with all their struggles and difficulties, is still somewhat normal. That normal is still within reach. They could learn how to blend. They could be part of that normal group of kids. It’s a false sense of security, even for those of us who are quite aware of our child’s challenges.”

This is a very good point. It is part of human nature, I think, to veer towards the societal acceptance of what is ‘normal’, even when this might include placing a child in an environment beyond their capabilities. Given the intrinsic human need to fit in, there is also a need to have one’s children fit in. Of course, this idea flew out the window when a special needs child arrived, and we (parents of special needs kids) all have to wear the armour of someone who doesn’t care to fit in at all …

What I know is this: My autistic child behaved better when he didn’t mix with other autistic children – in all ways, not just in a less autistic fashion. My eldest child imitated the disturbed behaviour of other disturbed children when briefly attending a special school for the purposes of being psychologically assessed. My mother-in-law was pining and aging beyond her years living in a home for the elderly, showing that even mature adults absorb the mannerisms and idiosyncrasies of other people they routinely mix with. I am happy to say that now, having moved closer to her family, she has been gifted a whole new lease of life, surrounded by her daughter, granddaughter and great-grandchildren, and carries a brightness about her that we haven’t seen in years.

Who we mix with matters, sometimes more than we think.

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Snippets and photograph from “From the Inside – raising, teaching, loving an autistic child” available from EmuInk.ie in Paperback and eBook.

I knew I had a problem with education when …

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I was asked during one of my recent press interviews why I had stepped in and taught my own child, why I seemed to have a problem with the provided education. I didn’t have a snappy answer at the time, but walking in the forest this morning, contemplating this question, my head was filled with memories, and all my reasons were shimmering right there, on the tip of my tongue.

Seventeen years ago, when our eldest son, Rory, was three years old, we sent him to a pre-school. My bright, weird, other-worldly, wildly creative child.

The future shone with the brilliance of potential yet to be realised. He was a special kid with a mind like no other. Education was bound to bring out the very best in him and open doors to new thoughts and ideas. Surely they would see this potential in him. I had such hopes…

Oh, silly me.

At the end of his first term, Rory came home with a school report which proudly announced one single thing –

“Rory will now eat his crusts.”

Did you gasp? I know I did.

This was a classic example of an educator who had lost sight of the child in their personal quest for something which they considered important.

I realised then that I had a problem with education, and with some of the people who provided it, and it brought to the surface something I had already suspected: that Rory was a round peg being squashed into a small square hole.

And what happens if you force a round peg into a small square hole? You shave off all those curves. That creative roundedness. That precious individuality.

You end up with less.

Education should make you more, shouldn’t it?

Not less?

That was why we ended up choosing a different type of school for Rory, one which followed the teachings of Rudolph Steiner. A school where his unique individuality was not only accepted, it was nurtured. Where his rampant creativity brought joy, not censure. Where he was a round peg in a sea of round pegs, making up a beautiful, complex whole.

Of course, not everyone has access to this type of education, and to be honest maybe it isn’t for everybody anyway, but for our son, at that time, it was exactly what he needed.

Is it any wonder, then, when I found opportunities lacking for our Ian, when I realised that the people who were there to educate him had lost sight of the child behind the diagnosis, couldn’t see what he ought to be learning for the prescribed syllabus dancing in front of their eyes, that I stepped in and blazed a trail?

The parents of autistic children have to deal with the pain and frustration of this every single day. It is this which underpins the writing of my book.

I believe that, for any child, creative teaching is desirable.

But for teaching an autistic child, it is essential.

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From the Inside – raising, teaching, loving an autistic child” is available in Paperback and as an eBook directly from the publishers, Emu Ink Ltd, in their non-fiction section. http://www.emuink.ie

Answering a really good question

for blog - rory and me

Mary Robinson-Foster wrote :-

I’d like to know if having 2 children so close together, and then having one of them needing so much of your time, left you feeling that you were “short-changing” Rory, and how did he handle all the “special attention” that HE wasn’t getting?”

That’s a good question.  I can’t promise that I will turn every comment into a separate blog post, but I would like to give this one a full and complete answer.  Thanks Mary.

Yes, we were aware that Rory felt left out, BUT (a) the majority of Ian’s therapy programme took place while Rory was at kindergarten, so he wasn’t home for most of it, and (b) knowing he felt left out made us careful to include him when he was home.  We just had to be careful not to talk too much about therapy ‘after hours’ as it were, when Rory was around.  We were very focused on the therapy programme and it really dominated our conversation.  Neil and I just made sure that when Rory was there, HE became the centre of attention.  When therapy was over for the day, Ian got ‘time out’ to do his own thing (under supervision, of course), but Rory and I would be together during those times, or Neil would read to him or draw with him.  We really made an effort to keep an even keel between the boys.

for blog - rory and me 2(Photo of Rory baking, wearing a paper chef’s hat he insisted I help him make.)

I’m not sure if having them so close together made any difference – in fact, it might have been worse if there had been a bigger age gap between them and Rory had understood more of what was going on.

When he was a little older, Rory got more involved in what Ian was learning, and loved to show his superiority by being able to do so much more than Ian.  (Naturally, he was encouraged not to lord it over his brother too much!)  He even made little ‘work books’ for Ian to complete.  These were sometimes way over Ian’s head, but it was lovely that Rory did it for him, and as Ian progressed, he could answer more and more of Rory’s ‘work book’ questions.  It helped Rory to feel more involved in Ian’s life and a part of Ian’s on-going education.

I’m sure that despite our best efforts there was always an imbalance, but as parents, we did what we could.  And besides, Rory was my firstborn.  Ian may have been ‘special’, but Rory was – and still is – a special person in his own right.  A great kid who – once we’d got past the early years – made it easy to want to be around him.

My father & my son – the intelligent mind meets the autistic mind

for blog - with grandadMy father was a clever man. He had one of those questing intelligences that was always keen to learn more, always ready to engage, always thinking. By profession he was an illustrator, but he was also an historian, philosopher, Egyptologist, star-gazer, and student of the human race. He absorbed the world until the day he died. And he was fascinated by my autistic son.

Fascinated.

They had a strange connection, those two. Somehow I don’t think Ian was ever afraid to look his granddad in the eye and meet his gaze directly. Something intrigued him about that bearded face and that twinkling, interested look.

One day my Dad said to me “Cookie, I’ve been thinking about this. This autism thing. What if autism is a new branch of the evolutionary tree?”

At first I was a bit taken aback. My child, evolved? How – ?

My Dad died over seven years ago, and the ‘autism as a branch of human evolution’ argument roared into being slightly after that, as I recall. Some clever minds have explored the idea better than I ever could, and a couple of snippets of their thoughts are included below.

However, my personal thoughts on the subject are these:

What does autism give us? A different human. A human who lacks the very worst traits of human nature. A human without greed, or avarice, or jealousy, or spite, or rampant dishonesty. A human without the need to ‘beget’, without the desire to add to an already groaningly over-populated planet.

In fact, if it weren’t for their general inability to communicate in the way we have come to expect from our fellow man, and their general lack of interest in taking appropriate care of themselves, it might be easy to think of autistic people as a better version of ourselves.

Stasia Bliss put it rather well in her article “Autism – a leap in the evolution of consciousness?” –
“If you have ever known or interacted with an ‘autistic’ person, you know there is something special about them, you can feel it. They draw you into the present moment in a way no one else can and lure you away from the troubles of your mind into a space of joyful freedom. …. However, if you relinquish attachment to ‘how things ought to be’ and simply allow the moment to happen as it wishes to unfold, these beautiful beings will lead you into a space far greater than the one you currently reside in.
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Is autism merely a difficult and disruptive disorder that we must seek to ‘cure’ or is it the signal of an evolutionary leap in consciousness here to show us the way?”
http://guardianlv.com/2013/06/autism-a-leap-in-the-evolution-of-consciousness/comment-page-2/

Beautifully put and thought-provoking, and I love that phrase ‘draw you into the present moment’ because with autism there is nowhere else to be but the now. But then you get this anonymous comment, which was posted at the bottom of Stasia Bliss’s article –

“As a student of Biology, I would LOVE to believe that this is a result of evolution. I am, however, not fully convinced due to the fact that many older generations are just now realizing that they have the diagnosis. It was simply not recognized years ago. Compare it to the “Earth is round” theory… for hundreds of years people believed that the Earth was flat. Finding out that it was round was simply an advancement in scientific knowledge. The Earth was ALWAYS round. Begs the question… Has Autism ALWAYS existed??”

He (or she) makes a valid point, don’t you think? ‘Special’ people have always existed. To be crude about it, every village had its idiot. Oh, I know, today’s sensibilities make that sentence abhorrent! But it’s true, isn’t it? No matter what age you are, you knew one, wherever you grew up, and I’m fairly sure that must go back through human existence, all the way to the cave.

Is my son an ‘evolved’ human being? Well, I am inclined to believe he quite possibly is, simply because he doesn’t have the worst of me.

But theories like the autism/evolution idea are cold comfort – quite spectacularly unhelpful – to those of us who have to deal with our child’s autism every single day, aren’t they? One might be tempted to say “Here, theorist, borrow my child for 24 hours, and then you tell me just how ‘evolved’ you think he is.”

Getting back to my Dad, though, I suspect he understood that Ian could lead him ‘into a space far greater’ (as Stasia Bliss put it) than the one we live in, and he took every opportunity to spend time in Ian’s company. When Ian was young, my Dad would sit with him for hours watching Walt Disney films

for blog - with grandad 2or they would listen to music together, or look at books together, or Dad would just be nearby when Ian was playing with his toys or making puzzles. If Ian was on the swing in our field (which borders onto my parents’ house), my Dad would always pop out his back door and come to the fence to greet Ian, and then stand watching him. Just … watching.

They had some connection, those two.

Ian would mention his granddad, sometimes every day. Until the day my father died.

Without needing to be told, Ian has never asked for him again.

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My book about home-schooling Ian – “From the Inside – raising, teaching, loving an autistic child” – is available in Paperback and as an eBook directly from the publishers, Emu Ink Ltd, from the non-fiction section their website http://www.emuink.ie

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Is ABA abusive?

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I suspect that like any system of education or behaviour management, the answer to this question depends almost entirely on the person implementing the system.

ABA might be ultimately self-limiting, and a more rounded, varied method of instruction may well be required in the course of time, but it can certainly provide a predictable framework within which an autistic child can begin to learn.

Time for a brief explanation:

Applied Behaviour Analysis (ABA) is a precise, systematic and measurable method for teaching children with developmental disabilities to learn. It is based on sound behavioural principles and evidence-based research and practice …. including positive reinforcement, graduated prompting, repetition and teaching tasks in very small (discrete) steps.
(Thanks to The Institute of Child Education & Psychology http://www.icepe.ie/index.php?option=com_content&view=article&id=1&Itemid=80 )

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I did ABA with Ian. There, I’ve said it.

I did the endless trials and the copious note-taking, and my one thought on the entire system is this: It works.

BUT it has to be done gently and with humour, and as for the endless notes and graphs, well, how else are you going to know where you started from, and how you are progressing, week in and week out, without clear written evidence?

It’s too easy to forget from day to day what progress is being made, and it’s too easy to fudge it and convince yourself progress is being made where it isn’t, AND it’s also too easy to persist unnecessarily with one methodology. My notes very quickly showed me where I needed to be more creative in how I presented a trial, and where – and when – I needed to change direction.

So I kept the notes, and I drew up the graphs. Not for everything; more by way of experiment to see how it felt; but I did it. Some of them were beautiful

for blog - ABA - graph

And some of them weren’t. But what they showed me was where I was doing things right and where I was going wrong. I am not a qualified ABA therapist; I’m a mother. I read everything I could find, and where necessary, I applied common sense.  I was the only one in the therapy team in South Africa who did ABA with Ian, and it formed a strong foundation, a solid base, for all the work which came afterwards.

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Let’s be practical about this.

Is it abusive to insist that your child goes to school day after day, whether he wants to or not?

Is it abusive for teachers to insist that the children in their class sit up, and pay attention?

Is it abusive to ask a child to learn the same subjects, day in and day out?

Is it abusive to expect a child to learn manners or behave in a way which is considered socially acceptable?

If you answered “no” to all of those questions, why would you answer “yes” if those questions were asked about a child with special needs? In other words, why is so much allowance made for special needs?

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A child with autism is different – of course he is! – but I believe there is a line between acknowledging the difference, and treating that child like he’s from another species.

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Through ABA, Ian learned to sit and pay attention, he learned to listen, and he learned to respond. The very simplicity of the tasks and the clarity with which it was possible to present them to him made it a predictable (essential for any autistic child) framework within which he could learn.

BUT it was always only ever done with love and gentleness, quiet patience, and a true understanding of Ian’s limits.

If these qualities can be brought to the therapy room, ABA can be a very useful teaching tool for an autistic child.

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curlicue.

(For more details, see my book “From the Inside – raising, teaching, loving an autistic child” available in Paperback and as an eBook from http://www.emuink.ie – non-fiction)