Autism: What the books don’t tell you (3)

Part three of my lecture notes.

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Waiting

I think I might be right in saying Ireland is a nation of talkers, hmm?  And waiting for someone else to speak may not be the highest thing on the agenda.

So what does this mean for the child with special needs?

More than once, I have heard my son greeted like this:  GoodmorningIanHow’reyoudoing?Yougood?GrandLet’sgo.”

I’ve written that as one long string of words because that’s how the autistic person hears it.  A blur.  A continuous stream of sound.  Nonsense which requires neither acknowledgment nor response.

And my response to it is this:

I didn’t spend hundreds of hours helping my son to speak for you to ignore the possibility of him speaking!

The autistic mind needs time to: (count them off on your fingers)  —

1) hear what you say,

2) process what you say,

3) search for the correct response,

4) find the correct response,

5) and breathe in, prior to speaking.

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So, if we generously give him a clear second for each of those things, what does that look like?

By way of demonstration, I say out loud “Good morning, Ian” and count off the seconds on my fingers, before answering myself “Good morning, Mummy”.

Five seconds out of your day.

Of course, because Ian is used to being asked, and knows there is an expectation of a response from us, there is no pause.  He answers us straight away because he’s had lots of practice.

But why might the autistic person need this time?  Well, we all know they may experience processing difficulties.  And if everyone knows this, the notion of giving an autistic person time to process should not be revolutionary.  After all, do they or do they not have special needs?  And if we acknowledge that, should we not be modifying our behaviour just that little bit to assist them?

However, that’s only one way of looking at it.  What if we look at it this way instead:   What if the autistic person sees everything?  Hears everything?  And remembers everything.  That’s a lot of information to sort through to find the answer to your question.

So you wait.

The way in which you wait is important, too.  There’s a saying that goes with dealing with horses:  “If you think it will take 15 minutes, it will take all day.  However, if you’re prepared for it to take all day, it will only take 15 minutes.”  It’s about finding that space in which nothing else matters but that moment.  A space in which ‘time’ does not exist.  Where there is no agenda.  No ‘what comes next?’  No ego.  No impatience.

There is only waiting.

Because if you can find that place, THAT is where the magic happens.  THAT is where you connect with the working mind.

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There is an obvious question here, of course:  What if I wait, and nothing happens?

Well, you have several options —

  • You can repeat yourself, and wait again and see what happens.
  • You can repeat yourself, and model the correct answer (“Good morning, Ian … Good morning, Mummy”) and pray for some echolalia.
  • Or you can smile, and move on, sure in the knowledge that the autistic person has noticed. Because, whether they’re looking at you or not, they notice everything.  And if they noticed that you waited, they may wonder what you were waiting for, OR, better yet, the next time they may fill the void with something of their own.

 

And how exciting would that be?

 

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Autism: What the books don’t tell you (2)

Over the past couple of months, I have given brief lectures to Social Care and Psychology students on the subject of autism.  Below is part two of my lecture notes.

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I’m now going to talk to you about my personal theory of autism.

While I was home-schooling Ian, I spent many wakeful nights thinking about autism and trying to find a way of explaining how I see it.  I knew autism but I also knew there was something else, a kernel of something precious and individual, and that if you could connect with it, extraordinary things might happen.

Because this kernel within was the working mind.

I call it my Jam Donut Theory, and it looks like this —

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When the child is young, the ‘dough’ is fresh and soft.  Malleable.  With enough work, inroads can be made through the ‘dough’ to the working mind within.  If you work hard enough, for long enough, these inroads can become permanent channels of access —

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And, if you get it right, the working mind within may expand and reach back to meet you—

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As the child ages, the ‘dough’ hardens, becomes denser, and harder to get through.  But the working mind within is still there, still sparking, possibly even looking for a way out.  I do not like to think about what happens when it gets ignored…

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Let me tell you a short story which illustrates what I mean about the working mind.

Not that long ago, my husband and I attended a party given by the group that cater for Ian every day.  It was a busy event.  Several other groups were also attending, so there were young adults with all different kinds of disabilities.  It was noisy and chaotic and wonderful.

One young lass, let’s call her Mary, went around the room shaking everyone’s hand and asking “What’s your name?”  That was her ‘thing’.  Round and round she went, and when she got to me, I took her soft hand gently in mine and told her my name, speaking clearly for her to catch it. Off she went again, round the room.  “What’s your name? What’s your name?”  I followed her progress.

Mary came back to me, took my hand and again asked me her question.  I looked straight into her eyes and said “You know my name.  I told you.  Can you remember it?”

Mary went very still.

I stood quietly and waited.

After many long empty seconds, she frowned and said “Fiona.  Your name’s Fiona.”

I smiled at her.  “Yes,” I said.  “Well done!  You remembered.”

After that, Mary wouldn’t leave me alone.  She clung like a limpet.  My new BFF.  Her mother became slightly embarrassed by her behaviour;  the carers who knew her were casting us curious glances.  I didn’t mind.  I was in the zone then, and Mary was delightful.

However, she was manoeuvred away from me, and shortly after that we had to leave.

It was only on the journey home, thinking about what had happened, that I felt really sad.  I realised that potentially for the first time in her life, someone had discounted the notion of everything she couldn’t do, and credited her with a working mind.

And clinging to me like a limpet was her way of saying “Thank you”.

I take the class back to the jam donut —

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and remind them that behaviour is just behaviour.  It is not the core of who that person is.  And it is important to remember that although the ‘dough’ may not age, the working mind does.  My son may behave like a strange four-year-old, but he’s twenty.  You cannot treat him like he’s four because he’s not.  You cannot keep putting the same infantile tasks in front of him just because he behaves in a way that makes you think they may be ‘age-appropriate’.  They’re not.  He’s seen them before, and he’s bored.

Challenge the working mind, or stop wasting his time.

 

end of part two

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Autism: What the books don’t tell you (1)

 

Over the past couple of months, I have given brief lectures to Social Care and Psychology students on the subject of autism.  Below is part one of my lecture notes. blog - curlicues

There is a vast amount of information about autism available in books and on the internet, so I have decided to talk about three areas which I feel ought to be explored.

The first is this :-

The Autism Triangle of Impairment.  Impairment in the spheres of —

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Very neat.  Very catchy.   However, let’s look at it in a little more detail.

If you were to isolate the bottom two categories, Socialisation and Imagination, like this—

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You might say Asperger’s.  Impairment in the spheres of socialisation and imagination, perhaps, but frequently able to communicate very effectively.

If you were to isolate another two —

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You might say Down Syndrome – impairment in the spheres of communication and imagination, but often highly social.

If you isolate the last two,

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Impairment in Communication and Socialisation but with unhindered imagination, you might say, what, full blown Schizophrenic episode? Locked-in syndrome?

My point is simply that according to this theory, only in autism will you get impairment in all three areas.

Let’s look at them more closely.

Communication

First off, you cannot tell me that a non-verbal child cannot communicate.  Non-verbal communication is an area of particular interest to me, and something I have spent a lot of time thinking about.  So, ‘Communication’ is the wrong word.  Obviously, we mean speech and language.  In its simplest definition, speech is the ability to form words; language is the ability to use them expressively or symbolically.

For the autistic child, the gap between speech and language can be vast.  The difficulty in leaping from the one to the other cannot be underestimated.  My son Ian has hundreds – possibly thousands – of words in his head and he can speak very effectively and very well, but he seldom uses language.  Bizarrely, if he does use language, he usually uses single words which imply questions, comments or observations, depending upon the surrounding situation. So a certain amount of guesswork might be involved.

And while we’re on the subject of speech, a lot has been said and written about the autistic person using lines from films, instead of using their own words.  As if this is a bad thing.  I don’t know, I think it’s pretty clever.  To take a single line from an entire film and use it, as a one-off – in absolutely perfect context, every time – in everyday life.  I’m not sure I could do it.

Moving on.

Socialisation

Yes.  I’d give this one a tick because there is impairment in socialisation. Definitely.  Autism by its very nature is unsocial.  Nothing makes the autistic child happier than being left to his own devices, in his own space, with his own things, to do as he wants.  That’s not to say he may not come looking for you for a brief moment of connection or help with something he needs, but certainly with our son, generally he’d really rather be alone.

Imagination

I’m going to dispute the notion that the autistic person has no – or even impaired – imagination, because I’m not convinced.  How do we tell someone’s imaginative?  By the things they say, and the things they create.  And just because you don’t have the means to accurately test it does not mean that my child has impaired imagination.

When I look at Ian’s iPad after he’s spent a while on it, and I go through his Google searches, I might see that he’s been into Google Images, searching under things like ‘Green water splash’ where you will find a series of the most amazing photographs.  Who’s to say that my child isn’t imagining extraordinary things when he looks at these pictures?  Just because he chooses not to tell me about it, or doesn’t express it in his own art, doesn’t mean it isn’t happening.

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So, having spent some time with our autism triangle of impairment, it now looks like this—

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Not quite the same.

My point is this:  Don’t take anything at face value.  Question.  Consider. And use your common sense.

 

End of part one.

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The Ethereality of Independence

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With a growing autistic child, the ins and outs of daily life do eventually settle. There aren’t any landmark breakthroughs to celebrate, and when he reaches 20 – as our Ian has – there are no great traumas either. It’s all pretty mundane. He is who he is, and that’s okay. I’ve come to accept that now. It took me years, but I’m pretty much there. I don’t like it, but it’s okay. Changes are few these days; the routine is rock-solid and we’re all doing well.

And then we meet another hurdle, our final one perhaps:

Independence.

The word twists in my head.

What do you mean, independence? Ian will never be independent! He’s a runner; he will disappear at the drop of a hat; he can never be independent…

I am reassured: Not full independence, of course not, that would never work. Independence only insofar as Ian can possibly be independent. We want to help Ian to be as independent as he can.

Hmmmm. My mind works over this one.

If a person craves independence, certainly that must be afforded, as much as is possible. If a person shows signs of wanting it, grant it where you can. But here’s the rub: the person has to want it. The impetus for independence has to come from inside.

And if it doesn’t, what then? If you are plugging away, day after day, guiding, assisting, facilitating, when there is no push from within to achieve independence, aren’t you eventually just pissing in the wind?

I have been asked more than once: ‘Does Ian brush his own teeth?’ It seems such a small matter in the greater scheme of things, but surely that’s something he ought to be able to do, isn’t it? Brush his teeth?

Well, yes, he could. He used to. I taught him well, supervised him regularly, and let the lad get on with it. But when he was six and we first arrived in Ireland, something went wrong. It became obvious that Ian had toothache. Bad toothache. He would wake up in the morning, crying with the pain of it. It was awful to see. I tried to get him a dental appointment, but there was no Health Service dentist who had a waiting list of less than three months. I even ended up speaking to the man in charge of Dental Services, begging for his help, and while he absolutely understood my plight and sympathised, even on the emergency list, Ian couldn’t be seen sooner than a month.

“But my child wakes up crying!” I said to him, almost in tears myself. “He has autism. I can’t wait a month… it just can’t ….”

He gave me the name of a private dentist who, good man that he is, saw Ian the very next day and after a brief examination, booked him into hospital to have proper treatment under general anaesthetic.

And there occurred the worst day of my life.

Not only did I witness my child being gassed prior to anaesthetic – and nothing will ever take away the sound of his voice clearly, desperately, calling to me from behind the mask – but I was utterly unprepared for the sight of him when he was wheeled back into the ward afterwards. It was like something out of a horror movie; my beautiful perfect child, with blood pouring from his mouth. Only it was real, and I was there.

Ian had to have six teeth pulled that day. Thankfully he was young and they were only his baby teeth, and they would be replaced in due course by their elder, permanent cousins. But oh-oh-oh, it was awful.

And more awful still, because Ian blamed me.

I had been there when he went under; I hadn’t stopped this horrible thing happening to him. He had called to me, and I hadn’t rescued him.

He turned away from me in the hospital bed. He wouldn’t let me touch him, my soft huggable child…..

And then and there, I vowed to brush Ian’s teeth myself. Always. He would never have to experience anything like this again.

And still I get asked: ‘Can Ian brush his own teeth?’

A step towards independence, yes, but at a cost I’m no longer prepared to pay.

So there’s the teeth issue.

‘And how independent is Ian with regard to toileting?’

Ah. Yes.

I apologise in advance, and hold onto your hats, folks, because this is going to get mucky… No, seriously, I’ll save you the worst of it. There won’t be any details; I’ll generalise as much as I can and save your sensibilities.

Ian was toilet trained – and properly so – when he was around four and a half. We considered it a tiny miracle. I had read that if he were toilet trained before the age of six, it would be unusual. Well, he was.

I had also read that if he was toilet trained too soon, this might have consequences later in life. I chose to ignore that bit.

Shouldn’t have, though. Coz that bit came true.

I don’t know when it actually started. Perhaps when Ian was about fourteen or fifteen, maybe before. He took against the toilet. Not for peeing. That was okay. But for all that other stuff. And it’s kind of slowly gone downhill since then. He’s 20 now, remember? A certain strength of character is required to daily clean the a**e of a twenty-year-old, that’s for sure, no matter how much you love him. A task shared between husband and wife, and entirely understood and hugs freely offered when a spouse returns from the bathroom with the kind of wide-eyed, blank, 1000-yard stare you might expect to find on an infantryman who’s just survived a bombardment…

When it comes to independence, with regard to Ian’s toileting habits I have realised that, God love him, there is no way on earth that Ian – no matter how cleverly taught – would be able to keep himself adequately clean on a daily basis, the way we have to, up to our elbows in sh*t…  Wet wipes, latex gloves, the works. It just wouldn’t happen. And then he would smell, and be unclean and unpleasant to be near, and require Lord knows what intervention, and it would all be undignified and more difficult, both for us and for him.

And all for what? Just a little more independence?

I taught Ian to bath himself ages ago, but what if he’s happy for me to bath him, over and over again, every single night, as the years tumble into each other? Oh, I have taught him most thoroughly, and the techniques we use are straightforward and easy to replicate, but does he actually bath himself without constant active supervision?

No.

He goes through the motions, wafting the facecloth over his face but never quite making contact, and soaping his hands and never actually cleaning anything. It’s all too haphazard.

The same with drying. He dries his hair and his ‘bits’, and then hands me the towel while he stands shivering and dripping wet, ready – in his mind – to step into his pyjamas. No, sweetie, you’re not quite done yet…

Independence for Ian is an ethereal thing, sort of ‘out there’, and not entirely solid. The truth is, he likes being looked after. He likes having things done for him. That being the case, should I stop?

The day he decides he wants to take control and he does so properly and with true intent, I’m outta there! Until then, we make a good team. And I will continue to brush his teeth just as long as the dentist – the same one that pulled Ian’s teeth so many years ago – praises me on how very clean they are. And every time I am pushed to give Ian more ‘independence’, I will smile and say ‘sure’ and make certain that we carry on just as we have been.

Because the dentist is happy with it.

We are happy with it.

And most importantly of all, Ian is happy with it.

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The autistic child – letting go

blog pictureMostly, our days just amble by and everything seems fine and under control, but every now and then an impish little demon will pop into my head and sabotage my thoughts, sometimes for weeks.  I work away at it, like a lion gnawing a particularly troublesome piece of gristle, until I can swallow it and move on.  However, this particular problem, the one that’s facing me today, is a tough one, and though I have metaphorically chewed and chewed, I am still really struggling to get to grips with it.

As you know from my book, I spent years teaching my son. I was utterly devoted to the job of helping him be more than could be seen on the surface.

I believed.

I believed in his extraordinary abilities; I believed that with the right help, he could be more than the sum of his behaviours; I believed in the spark I saw in his eyes when we made a connection; I believed in the joy I saw when he learned something new.

But all that was a long time ago, and Ian has changed a great deal since then.

It has been very hard for me to watch this change come over him, and sometimes the pain of it swamps me, because I still believe.  Most of the time, I have to close off those wonderful memories, but occasionally some little thing will spark a dam-burst of hurt, and I struggle to get myself under control again.

This happens when I feel Ian is being sold short.  Dumbed down.  His extraordinary abilities ignored or simply done a disservice.

But I have to raise my hands and surrender to the people who deal with Ian today. It is expected.  It’s their show now.  I had my turn.  I have to back away, even though somehow I feel let down in ways I didn’t even know existed.

When I saw the photograph at the top of this blog entry, it really made me think. After all this time, does it really matter?  What I feel today, will it matter in six months? A year? Five years?

I wonder.

Now is the time I have to let go, and give Ian space – the same as any mother has to, with any child. They grow up; they become their own people; they don’t need us as much. We have to take a back seat.  But how much harder this is with the autistic child, the always-child – even though he’s nearly twenty – who continues to rely on me for so much, every single day.

Who else will be his champion?  Who else will fight those battles for him?

Perhaps those who have read my book and shared my journey will understand why this is so very hard for me.

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“From the Inside – Raising, teaching, loving an autistic child” is available in paperback and as an eBook from Emu Ink Ltd (www.emuink.ie), in paperback at Easons Dungarvan, County Waterford, and on Kindle at Amazon.

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