I am sharing this book as a pdf so it can be easily downloaded and shared with others. Please feel free to pass it around.
I am sharing this book as a pdf so it can be easily downloaded and shared with others. Please feel free to pass it around.
Fiona van Dokkum was born in Surrey a very long time ago, and grew up in Sussex, England.
Educated at Michael Hall School (a School which follows the teachings of the German Philosopher, Rudolph Steiner), she was a quiet, self-contained, creative child with a passion for animals, sewing, reading, writing, and being in Nature, anyhow, anywhere.
Finishing school in Cape Town, South Africa, Fiona toyed with the idea of going to university to study music (she played violin and piano), but was drawn in equal measure to archaeology and drama. A series of aptitude tests recommended she find a career working with plants or animals, preferably not people. So she went to Secretarial College, and became a surprisingly good Legal Secretary.
In her twenties, Fiona moved to Edinburgh with the love of her life, her Border Collie, Badger, where she lived and worked for over two years.
There, living 6,000 miles away from her family, she was presented with the perfect opportunity to indulge her love of the English language by writing long and descriptive letters home. She eventually realised, however, that she was utterly miserable and couldn’t wait to get back to Cape Town. Yes, Badger went too.
Today, Fiona lives with her wonderful husband, Neil, and their two sons, Rory and Ian, on a mountainside in County Waterford, enjoying “the best view in the world”. There, she writes, tends house, keeps bees and takes daily walks with the family’s manic Lurchers, Daisy and Molly, and the Whippet, Buttons.
Her first book, I Love My Bees, was published in 2010 by Northern Bee Books. Her most recent attempt at fiction is an as yet unpublished collection of three short fantasy stories, entitled Into the Woods. She has also written a blog about conquering sugar addiction – The Jellybean Journal – battling the sugar-daemon, https://isthatajellybeaniseebeforeme.wordpress.com/
–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.
Yesterday, I heard someone refer to Ian as ‘a real man’s man’.
I freely admit, my first thoughts were “What? My profoundly autistic son? How is that even possible?”
So, as always when I’m presented with a minor mental challenge, I gnawed on it, examined it from many angles, spent a sleepless night considering it, and did a little bit of research on it.
What exactly is a ‘man’s man’?
Perhaps I should start with my own thoughts on the matter …
To me, a man’s man is someone who is confident within himself, of himself and of his place in society. A man who is polite but strong-minded. A man who can express his thoughts clearly, and is not afraid of his emotions. A man equally comfortable in the company of men and women. Like that, sort of.
Does any of this apply to Ian?
Okay, I have to look further afield …
I’m not sure that helps us much.
No, that definitely doesn’t fit.
I’m beginning to understand what was meant.
Up til now, Ian has had almost exclusively female tutors and support staff. I had never given it a second thought.
Ian likes being outdoors.
Ian likes engaging in outdoor pursuits, in the company of his two (male) support staff.
Ian is responding well to their calm masculine guidance.
Ian is communicating better, more clearly and more frequently in an all-male environment.
Thus : Ian is a ‘man’s man’.
I think I get it now. 😊
And here’s another thing. Because of COVID-19 Ian has been in a much smaller group. Only him and one other ‘service user’, and their two carers.
A smaller group means less over-stimulation – remember, each service user has their own dedicated adult in attendance, so whatever number of people were there to be cared for, double it.
It also means less imitation of iffy behaviours.
That’s the thing, isn’t it? The books might tell you ‘autistic children don’t imitate’ –
“Often children with autism spectrum disorder (ASD) show deficit in imitation. They often show little interest in the behaviors of others around them and rarely try to imitate them.” (https://luxai.com/how-to-teach-imitation-to-children-with-autism/)
But they do.
Reducing the size of the group and thereby limiting over-stimulation, and giving Ian male support staff for the first time in his 25 years, has shown a marked improvement in his interactions, his communication, and his willingness to cooperate.
And I, for one, couldn’t be happier.
All his life, Ian has called us “Mummy” and “Daddy”.
He never wavered. He never seemed to wonder why other people called us something else. Even when I tried to tell him, he wouldn’t be swayed.
We were mummy and daddy, and that was that.
So imagine my surprise at bath time last night, when Ian quietly, almost experimentally, asked me “What’s your name?”
I smiled at him. “Mummy,” I said.
Still softly, but quite determinedly, Ian corrected me. “Fiona.”
I blinked in surprise. “Yes, of course. My name is Fiona.”
“Neil,” said Ian, obviously following his train of thought.
“Yes, that’s right. Daddy’s name is Neil.”
Had he been taught this at his day placement? I checked today. No, he hadn’t, although they have observed that Ian is using language more freely and communicating more directly with the staff there, almost day by day.
This is very exciting. The right people in the right environment, connecting with Ian through the right activities = spontaneous greater language usage.
And after all these years, Ian has finally made the connection.
That I call ‘daddy’ Neil, and he calls me Fiona.
Twenty-five years old, and my son finally knows my name. I wish I could adequately express how big this feels. ‘Cosmic’ doesn’t quite do it justice.
Not because he knows it, but that he made the connection by himself.
He worked it out alone, and then fact-checked by asking me my name, and corrected me when I gave him the wrong answer.
That’s huge, and it’s going to take me a while to stop smiling.
I’ll be back in the New Year.
Season’s Greetings, everyone. Stay safe, stay well, stay happy.
Much love ❤️
It has been my experience in life that people aren’t always great at waiting for other people to speak.
In fact, they may even talk over someone, without even pausing to listen to what another may say. And that’s fine if you’re neuro-typical and with a friend, and can say with good humour “Hey! I’m talking!”
But what does this mean for the child with special needs?
On more than one occasion, I have heard my child greeted like this –
One long string of words. A continuous blur of sound – that’s how the autistic child hears it. Nonsense, which requires neither acknowledgment nor response.
By people who work with autistic people!
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.
We know that children with autism have processing issues. And if we know this, surely we should modify our behaviour to take it into account? It seems fundamental, doesn’t it? But you’d be amazed how rarely it is done.
Let’s break it down :
The autistic mind needs time to –
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
Let’s say we generously give him a clear second for each of those things, what does that look like?
I say “Good morning, Ian” and count off the seconds on my fingers.
Ian takes a breath and answers “Good morning, Mummy.”
Of course, thanks to our many hours together in the therapy room, Ian is used to being asked questions, and knows there is an expectation of a response from us, so there is no pause. We don’t need to count off the seconds, mentally or otherwise, because – if he knows the answer – he answers straight away.
Five seconds out of your day.
BUT that’s five seconds for each time, not just for a response to ‘Good morning’. Every time you look for an answer. ‘Would you like some juice?’ ‘Have you finished?’ ‘Look at the picture – What is the boy doing?’
Whatever the question, the waiting is the same.
Over the span of a day, it may add up to a few extra minutes. But that’s a few minutes of useful work. A few minutes of time well spent.
A few minutes in which you have shown respect for an autistic person’s need to process.
Shown an understanding for the very nature of autism.
I say five seconds by way of example. It might be less than that. It might be a lot more. Twenty seconds. Thirty. I don’t count. ‘Five seconds’ is just to give you a handle on it, a way in. The time will be different for every person.
Of course, the way you wait is hugely important.
It’s about finding that place 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?
Where there is no ego. No impatience.
There is only waiting.
If you can find that place, that is where the magic happens. That is where you connect with the working mind. *
There’s 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
~ you can repeat yourself, and model the 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 they notice everything. And if they notice that you waited and gave them time, they may wonder what you wanted. Better yet, the next time you wait, they may fill the void with something of their own.
And how exciting would that be?
* See previous blog Autism : The Jam Donut Theory
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 –
I had Ian’s complete and riveted attention.
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 –
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.
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.
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://fromtheinsidedotorg.files.wordpress.com/2020/11/from-the-inside-2ed-2020-copy.pdf
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.