The doctor kept insisting that our son’s balance and co-ordination were within normal limits – right up until I organised a small demonstration. I stationed the doctor with me at one end of a hospital corridor, and the two younger children at the other. On the word ‘Go’, they ran towards us, the 21 month old straight as an arrow, legs pumping evenly, the four year old lurching from side to side, legs flying in all directions, crashing into one wall and righting himself, tripping himself up with his own legs and crashing to a halt half way down the 20 metre course.
I said nothing.
The doctor said, ‘I’ll write you a referral for more tests.
Did he know at the time, I wonder, that the brain damage that caused ataxic cerebral palsy, as well as the damage we discovered later, was a possible effect of that level of chemotherapy given at that age? It would have made no difference to our decision to have our son treated – the alternative was his death. It would have helped us later to meet the issues as they came up.
Ataxic cerebral affects the the brain’s ability to co-ordinate muscle movements, and to balance. The reason the boy always hit his head when he fell was that his brain didn’t recognise the falling sensation and so his body didn’t react until it hit the ground.
So our first action was to buy him a crash helmet. The second was to embark on a long course of different kinds of therapy to teach him when his body was falling, and to help him to gain control over his muscles so that he could walk, speak intelligibly, and gain bladder control. For the next two and a half years, until we discovered hippotherapy (through Riding for the Disabled), this meant three hours of exercises every day, six days a week, with one day a week at a therapy centre. The house was a tip; nothing grew in the garden that didn’t look after itself; and the washing never made it out of the folding pile till someone dug through it for something to wear. But we turned the therapy exercises into games the girls could enjoy, and we got by.
He loved kindergarten, and looked forward enormously to school. With some trepidation, we let him start after his birthday, four weeks before Christmas (and the birth of our Christmas baby, his third sister). He was just in time to be the smallest shepherd in the school Nativity play.
What a challenge for a teacher. His IQ scored in the top 5th percentile on any tests that did not require co-ordination. We didn’t get an accurate assessment, because he grew too tired to continue past the tests designed for 10 year olds. His speech was extremely slow and often unintelligible. He fell whenever he tried to run, and often when he walked. His bladder control was… patchy. He had been reading and doing simple arithmetic for months, but couldn’t control a pencil well enough to write his own name. Given how hard he had to work just to stay upright, it was not surprising that he fell asleep after lunch each day, and the school day was much too long for him.
The school adapted. Some of the parents didn’t. “You shouldn’t send your son to St Brigids,’ one mother told me. ‘There are special schools for that sort of person.’ Others just thought we should hide our son away so that he didn’t offend by his presence.
To some extent I can understand. A child with disabilities requires a lot from a teacher. This is time that can’t be given elsewhere. Our son had a typewriter. He had a reader/writer for tests. He had time off to go riding horses in the middle of the school day. He had a teacher’s aide for an hour or two several days a week. From an outsider’s perspective, those might seem like privileges.
But he lived all the time with a body that would not obey him and an incisive intelligence that meant he could work out what he was missing. This was not his fault or ours. And the paucity of funding to support schools in helping those with disabilities, and the government’s determination to ‘mainstream’ – to close any facility that was designed for those with special needs – those weren’t our doing either.
And this was, after all, a faith school – the hostile parents and their bullying children that we encountered right through his school years were (at least nominally) our faith family. Not much community spirit there!
Part of it, I’m sure, is sheer ignorance. So here’s the Joyful Papist guide to things you need to know about disability:
- Disability is not infectious – your child won’t become disabled by playing with ours.
- He won’t break – within his limits (and we are well aware of them, and watching out for him) he is as tough as any other five year old. In fact, he’s probably tougher than your kid – pain means nothing to him; been there, done that. Your child can safely play with him, and if either your child or ours is at risk, I’ll say something.
- We didn’t do anything to cause or deserve this – disability is not a punishment for the child’s sins, or the parents’. We are sinners like anyone else, but our child’s disability is not evidence that we intend to corrupt or damage your child.
- He can understand you, stupid – people with disabilities have ears and feelings. Don’t say anything in front of our child you wouldn’t want said in front of your own.
- He isn’t a pet, a freak show, or a trophy – don’t be nice to our child to show other people how generous you are; be nice to him because he is a neat person, or leave him alone.
- People with disabilities need help to access what other people take for granted, not special treatment – put him half way up the field if you must, so that he can compete on an equal footing, or bar him from competing if it is not safe for him. Whatever you do, don’t bar him from competing then give him a prize for doing nothing.
- He needs to do it himself – help him if he needs it, but don’t do it for him. I spent many years trying to explain to teachers that they weren’t helping him by not requiring him to hand in homework, or by getting other children to do the chores that he was allocated.
During these primary school years, we discovered how wonderful hippotherapy (horse riding) is for almost any disability. That he can now walk and (mostly) run without falling is largely do to learning to understand his own muscles by feeling those in the flanks of a horse under his legs. He learned concentration listening to riding instructions, and patience trying to convince the horse to do what he wanted it to do.
He also had his epilepsy, adrenal insufficiency, and other endocrinal disorders diagnosed. The major diagnosis; the one that set the course for his life, waited to ambush us in his teenage years.