Fundraising & Marketing Manager Caroline Moody tells her own personal story of her experience at the ‘mild’ end of the spectrum
‘I wish I’d never been born.’
The words of my son as we drove home from a family friend’s birthday party. Seb knew several people there but he had felt very excluded. He realised then that he could not make friends like others seemed to.
‘I wish I’d never been born,’ he said.
He was six.
His issues involved being over-sensitive to sounds, he loathed balloons in case they popped, his anger went from zero to off the scale in seconds. He found it difficult when things didn’t go his way playing football. He was happiest lining up his planes, or playing with Lego.
The saddest thing, to me, was watching him walk into the school playground, to stand on the same drain cover each morning, waiting for the dreaded bell to ring while all around him children were running, playing, screaming, laughing.
I had started noticing his behaviours when he was about three. He did enjoy spinning wheels on his upside down truck, and he used to be chased around the hairdressers when it came to having a haircut. He was the only child I knew that did this.
In the struggle to get a diagnosis, I kept a diary of incidents and behaviours that I didn’t consider ‘normal’. It was indeed a struggle because – fortunately or unfortunately – Seb was borderline in getting a statement of need, which meant that he was in danger of slipping through the net. A child who needed help but was being failed by the system, I felt.
I found that diary recently. In September 2003, I wrote: ‘At bedtime, tears in his eyes, Seb explains that he is not looking forward to the new school term tomorrow. Everyone hates him, he says. He is teased a lot by kids in his class. They call him dumb, stupid. He feels like he doesn’t “belong” in this family because he makes mistakes all the time. I say I made mistakes as a child. … But you weren’t hated by everyone, he says.’ He was ten.
He was a picky eater. I decided early to pick my battles, and I happily gave him a plate of instant noodles for Christmas lunch. Another year I gave him pizza.
While the fight for a diagnosis continued, I tried him on a gluten-free and dairy-free diet, and this, along with stripping out fizzy sugar-laden drinks, removed a lot of his anger. We tried brain-gym kind of exercises to improve his co-ordination, and we tried Johansen sound therapy, which he found calming.
I used social stories to help him learn how to be gracious in playing football.
All this – and I was at the ‘easy’ end of the spectrum…
Having fought for a diagnosis, which was Asperger Syndrome with an element of dyspraxia, I understand some of the frustrations that parents have to go through. To me, diagnosis was key, it was a positive thing to make sure he got the right support at the right time, and he went to the right school for him. Teachers and support staff at Grainville, and later Highlands College, were fantastic. Seb took the help offered. When it came to exams, he had extra time and a quiet room. He achieved his target grades. And socially he found the fabulous Youth Inclusion Project where he made some wonderful friends.
It was only when I met Philip Le Claire at a conference that I felt for the first time that someone understood. No longer was my father going to say it was something a good old-fashioned smack would sort out. With friends, I set up a group called SNAP – which stood for Support Network for Aspergers Parents. It was very informal and we met at the Harvest Barn once a month. We found that a glass of wine and a chat with those who understood really helped.
This really is similar to the start of Autism Jersey’s own journey – as parents got together for mutual support. The charity was set up in 2005 to offer an understanding ear, a shoulder to cry on, and support to families who are going through an emotional and difficult time. At this point I should add a thought about referring to the ‘mild’ end of the spectrum. Aspergers is not necessarily mild in terms of the impact it has on the individual. In fact, it can be worse because they are aware that somehow they are different.
No one truly knows what families go through on a daily basis
What do I wish I had known? Work to their strengths and look for the positives. Today there is now SO much information available – embrace it all – take what you need from it – and never give up fighting for your child. I really did try anything and everything.
And the result?
Today Seb is a tall handsome young man (perhaps I am biased!) who works full time, lives independently, has some lovely friends, is the most inclusive young man I know. He has been on holiday with mates to Spain, Amsterdam, Florida, Mexico. He particularly likes the airports, of course…
He has even been on a Raleigh International three-month expedition to Costa Rica and Nicaragua.
The most important word I am using here is friends, genuine friends, some of whom are on the spectrum and many who aren’t.
I tell you all of this because, thanks to a media role for 30 years, people tend to think they know me… No one truly knows what families go through on a daily basis. I consider myself blessed to have a son who has a diagnosis of Asperger’s Syndrome. It has opened up a fascinating world. I know I am fortunate that it does not cripple his life, and my experience gives me a small insight into what parents go through.
*If you would like to tell your story, please email Caroline at firstname.lastname@example.org