Autism: 'On paper Ireland was Nirvana for an autistic child but it might as well have been a work of fiction'
Fiona van Dokkum home-schooled her son Ian, diagnosed with autism as a toddler, and found it to be a tough but rewarding experience.
Fiona van Dokkum has two answers to how it feels to have an autistic child. There's the social one, where she smiles and says she adores him just as he is, wouldn't change him for the world. And there's the searingly honest one, where she talks of having been "violated by nature - there's a hurt in there that won't go away".
It doesn't diminish her complete and utter love for her son, Ian, born 19 years ago in Durban, South Africa where Fiona and her husband Neil lived with their first child, Rory. The new baby didn't take to breastfeeding and he was a great sleeper, both common traits of autism in infants, but hardly the kind of things that would set off alarm bells. The diagnosis came two-and-a-half years later, by which time Ian had not uttered a word.
"As his mother, I knew something was up; I just didn't know what, so there was a sense of relief in knowing at last what we were dealing with," says Fiona. But it was a shock too. "When you have a child, a future is gifted to you with that child - sharing conversations, ideas and jokes; a future that includes school, college, friends, marriage, children... All of that was taken away. I had to grieve. It probably took me about 10 years to come to terms with it."
While she did that, there was a much more pressing matter to deal with - finding the tools required to help her son to communicate. She set up a team of speech therapists and other professionals to come to their home in Durban to work with Ian, day in, day out, as she explains in her book, From the Inside, launched last month by the Mayor of Dungarvan, Councillor Damien Geoghegan, who said: "I was struck by the forgiving way Fiona deals with those who didn't seem to quite comprehend that, as Ian's mother, she knew and understood Ian's needs better than anyone else!"
Her story is a first-hand account of the challenges, pain and joy of helping a profoundly autistic child to achieve his full potential with little or no support from official agencies. It's also a tribute to the unbreakable bond of a mother and child, both triumphing against the odds to bring him out of his silent autistic world and enjoy life to the best of his ability.
After two-and-a-half years, the team disbanded as individuals, moved to other jobs or got married. Six months later, Fiona and Neil decided to leave South Africa and raise their children elsewhere. One reason they chose this country was because of the excellent services it purportedly offered for autistic children.
"On paper, Ireland was Nirvana for the autistic child," says Fiona. "Neil came back from his trip to Dublin with pamphlets showing that Irish state schools promised autism units with one teacher and two helpers to every six children, and there appeared to be up to four of these schools in each area."
Neil got a job as a lecturer and they packed their bags and settled in an idyllic part of County Waterford, but it quickly became apparent that the pamphlets they had read were, in Fiona's words, "almost works of fiction".
"I felt let down. We were finding our way here and there were brick walls everywhere I looked. I was dismayed. Don't get me wrong, these are good people trying to do the best job they can, but autism is not a one-size-fits-all condition. Every autistic child has different requirements."
For a while, Ian attended a special needs unit, but Fiona says his behaviour regressed and she took him out of school and took it upon herself to teach him at home.
"Suddenly I was faced, not with a toddler, but with a strapping nearly-eight-year-old, who was as stubborn as a mule and could turn on the 'I'm seriously autistic' mode at will. Oh, boy! We sat in silence as the minutes ticked by, Ian staring into space and refusing to read the word 'the', me digging in my own heels and refusing to prompt him. Eventually, I begged him… and he read the whole sentence fluently and without stopping."
And so the days went by, with Ian sometimes happily co-operating and other times retreating to his own quiet place, refusing to participate. Fiona persevered and watched as Ian found his voice - and learned to use it. He also demonstrated remarkable ability. When once Fiona and Neil thought Ian was drawing the same picture over and over again on his computer, on closer inspection, they realised he was recreating, frame by frame, the footage of the movie Aristocats he'd seen on DVD, and making his own animation.
Today Ian is 19 and, after all the home-schooling and one-to-one attention from his mother-tutor, he now attends a post-school facility where he is learning to interact with his peers and enjoys horse riding, art and music. In this environment, he has withdrawn somewhat into the comfort of his autistic world, yet his command of language, his skills and his finely tuned sense of humour are all intact, thanks largely to the sheer dedication of his mother who refused to give up hope that her son would find his place in the world.
"We were lucky that we started Ian on an intensive programme at a critical time for language development, before the age of five. It breaks my heart today to witness the anxiety of parents with autistic children over waiting lists for services, but I say don't wait for the Government to deal with your child - take the reins yourself. You know your child better than they do, so start your own early intervention now.
"There are lots of things you can do: sit down and read a story, point to a word and read it carefully, then give your child time to read it back to you. A special needs child needs extra time to answer for him or herself. Just wait. Be patient. You never know, something wonderful may happen. And above all, remember, you're not alone."
Five Things I've Learned from My Son
Expect every day to be different
If you don't do this, you're going to be wrong-footed. I can try and keep Ian within a routine, but some days he will be bright and other days, almost unreachable. I treat every day as a fresh day.
I have more patience than I ever believed I had or would need. People tend not to wait longer than a few seconds for an answer to questions, but Ian might need five or 10 seconds. You have to wait and give him time so that he can get his thoughts in order.
I've learned when to make allowances and when not to. If I know Ian has learned something, I don't accept him pretending not to know it. Everybody has to have boundaries, including autistic children; they're not a different species! You can't put the condition before the child. The child comes first, autism second.
Be open to surprises
I am always open to the possibility that Ian might surprise me. It can happen in little ways, like giving me an answer I wasn't expecting, or using words I didn't know he had.
I've learned to listen REALLY well. Ireland is a nation of talkers, not listeners. People talk over each other and they talk over children with special needs, and that makes me cringe. Besides, too much talking confuses autistic kids. And they often speak quietly themselves, so if you're not listening, you miss it. Slow down and hear the magic.
'From the Inside: Raising, Teaching, Loving an Autistic Child' by Fiona van Dokkum, published by Emu Ink at €10.00 (€12.99 incl postage and packing) for the paperback - also available as an eBook, or to rent digitally - from the non-fiction section of the Emu Ink library at www.emuink.ie, or from Easons, Dungarvan, and The Bookshop, Waterford.
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