Monday, July 04, 2005

Alex the Fireman Comedian

My little sister is famous today. Here's her article from the BBC website.

I have a son called Alex. He fits snugly between two daughters, one older and one younger, and a husband, making what would look to society as the perfect family. The only difference is Alex suffers from the condition "Attention Deficit Hyperactivity Disorder" and that is where society struggles with Alex.

Seven years ago I sat in a consulting room at our local hospital and was told my son suffered with ADHD. Like many people I had never heard of the condition before and remember being overcome with relief that it wasn't me being a terrible parent who couldn't control her child, that there was some explanation why Alex behaved the way he did.

Alex came into the world 13 years ago. From the start he was lively, funny, exhausting and never slept. He even gave up his daytime nap at six months old! At ten months he ran everywhere, walking wasn't an option, and taking him out meant strapping him into a buggy with three harnesses, which he still managed to escape from. Alex couldn't keep still for a moment and neither did I, trying to keep up with him. I cannot remember the amount of times I was told, 'don't worry, he'll grow out of it, he's just a boy,' except Alex never did.

Toddler groups, playgroups and nursery were all a nightmare and although other parents appeared to be sympathetic, I knew my son was socially different and didn't fit into the mould. Family outings and shopping trips became a nightmare. People felt sorry for me, I was exhausted and losing the plot.

ADHD affects around three to five percent of the child and adolescent population in the UK. Even as recently as ten years ago there was little awareness of the condition. ADHD is a diagnosed condition that affects the chemicals in the brain and is often referred to as the 'unseen disability'. Alex often looks normal, he just behaves in a way that is often unaccepted by society.

The main traits of the condition are attention difficulties, impulsiveness, hyperactivity, insatiability (the world is never enough) and social difficulties. The true symptoms of Alex's condition came to light as soon as he started school. I was called in to the classroom most days regarding his behaviour, which looking back showed all the signs of an ADHD child.

The hardest thing for me during this time was the feeling of isolation that Alex's condition brought. No one seemed to understand his behaviour or see the real child underneath. Alex was a happy, intelligent, sensitive and above all loving child who received knock-backs at every turn from school, peers and outside activities. This would grow to the point where I watched his self esteem replaced by anger and frustration.

Following Alex's diagnosis, as with most children with this condition, medication in the form of Ritalin was offered to us to help him. Although like any parent the thought of medicating my child caused endless anxieties, yet we felt he deserved the chance if it worked.

The result was miraculous. Suddenly we had a window of opportunity to work with him. He would sit and concentrate for short periods of time, he was less challenging and he seemed generally calmer. Alex was able to cope better with the school environment and we started being able to go out as a family. We felt normal at last.

The biggest lifesaver for me was being signposted to the local support group. A phone call to a complete stranger one evening, who understood what I was going through, became my lifeline.

The acknowledgement that I wasn't alone and there were other kids on the planet the same as Alex helped me through. Friendships were made, a social life built up where our kids were accepted as they were. Knowledge and understanding of the condition and how to work differently with Alex made it easier for me to become his voice and be able to fight his corner when I needed to.

Although the journey with Alex has brought many challenges over the years, I feel we are all doing ok. Alex has friends and is coping well at high school, as long as I go in and pull them in line from time to time. He wants to be a fireman and stand up comedian when he finishes his GCSE'S, which just about describes his character - funny, entertaining and not frightened to take a risk.

My passion for wanting to change these children's lives has led me to work for our local support group, running parent education, providing respite, working with local schools and anyone who has any involvement with these children.

With the right support, help and encouragement, kids with ADHD can achieve great things and as a mother of such a child I am determined he will be one of them.

Tess, Alex, I'm really proud of you both!

Funny coincidence - today was having lunch with a friend who told me she had ADHD and wondered how I knew so much about it and why I was so interested in how she coped with it. Well, I have Tess and Alex to thank for that.

I'd never heard of ADHD till Alex was diagnosed. I went to the internet to read up and was stunned as I read down the list of symptoms because I recognised myself as well in the non-hyperactive form of the syndrome, Attention Deficit Disorder. That's why sometimes I'm so spacey, so muddle-headed, so forgetful, so hopelessly untidy. (If you know me and you wondered!) Over the years I've learned to work around it, inventing systems, writing lists, but it is a constant daily battle for control over the forces of chaos. Most days I win.


Kak Teh said...

Sharon, my niece's son has mild ADHD. But at the moment as he goes for counselling, there's more eye contact and he answers questions and could actually stay put for a few minutes. My niece reported that he uttered two words recently and that was really a major achievement.
I am happy to read of Alex's progress. Will let my niece know about this. Thanks for sharing Sharon.

bibliobibuli said...

Glad it helps, Kak Teh. Sharing stories is important isn't it?

Your niece could contact my sis thro' the BBC website if she thinks it would help. Tess would love to hear from other people with ADHD kids and has a strong connection with this part of the world anyway.

One analogy I read in a book on ADHD - ADHD kids are nature's "hunters" - brave and fearless and fast, as opposed to the safer settled "farmers". Trouble is that we live in farmer societies.

Yvonne Foong said...

One of the symptoms of NF1 is ADHD. :-|

bibliobibuli said...

Doey - went back to your site to read about Neurofibromatosis. Goodness, you are one brave lady (not that you have any choice in the matter, of course). I'm glad you've written a book about your condition - there are always others who need the information ... and there's also the task of banishing ignorance.

Kak Teh said...

sharon, I have also alerted someone who is doing a study on this condition as well as on autism. I wonder how much help and support are given to parents in Malaysia?

anedra said...

Sharon, Hie! I am KakTeh's niece that she mentioned about. Actually, a bit of correction is needed..he was initially diagnosed as having ADHD but then later as having a mild development delay (though really, I can't tell the difference!). He is rather active, and the therapists recommended Ritalin but he could be too young for it since he's only three. I may just get in touch with your sister one of these days!

Thanks for sharing Sharon! This gives me more hope!! And God knows I need a LOT of that!

bibliobibuli said...

Anedra - glad to meet you and glad it gives you hope. I told my sister you might call her and she said she would be very happy to talk to you.