Today is the International Day for Persons With Disabilities, which will be marked worldwide. It's also Son1's 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger's who are worrying what the future may hold for their children.
When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn't have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.
Within the first few terms of reception, he had a behavioural chart. He couldn't bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others' point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.
He loved football but would often sulk on the sidelines if he couldn't play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.
Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach - something he still does - to support him.
So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was - Asperger's with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.
And find it we did.
For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger's or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls' school. We even moved house to be closer for the daily school run.
Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason - as long as you don't ram it down his throat. Best of all, he has friends.
Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs - which is not always the same as what he wants. But mostly it's the intensive input and care from the experts in the Learning and Development Centre at school
I'm telling you this because I know very well that there are parents reading with younger children who are still at the 'before' stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.
On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.
This is not to say that some have it worse so you can't feel bad - no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.
But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence - for them, you and their school. As further proof, this year at his football club, he won the Chairman's Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.
My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help - for your child and for yourself - but above all, believe that the future will be better.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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