How it all began

I sit indoors to get some relief from the scorching afternoon heat as I wait for the little man to return home from his special school on the bus. I never imagined life would be like this when he was yanked out of me 6 years ago. I was just glad that labour was over and to all eyes he looked like a healthy little boy. He fed, he slept, he cried but not too much. We were lucky.

But then everything changed early in October when he was just 8 months old. We were at a public swimming pool, all four of us. I had the toddler, my husband had the baby. There was something in the way he called my name that told me right away that there was a problem. He sounded scared. When I looked at this little boy it wasn't immediately obvious what was going on. He was still looking at me and smiling, but both his legs were jerking in a rhythmic movement. I called for a first-aider.

"We think you should take him to the hospital," they suggested rather unsure of themselves. No mention of why or whether it might be urgent and he still looked okay, apart from the leg jerking. We started to dress ourselves but he quickly went downhill, and by the time the ambulance arrived he was blue, vomiting, limp and lifeless in my arms.

When we got to A&E there were 3 doctors and 3 nurses waiting for us. They wired him up to every kind of machine I could see and put a needle in his arm. Nothing like this had ever happened to me before - my legs went from underneath me. Someone sat me down and the questions began.

It was an afrebrile seizure, which means he didn't have a temperature at the time, and may never happen again. But they would do a brain scan and an EEG just to see.

Since then we've had countless trips to hospital and a variety of different medications. It feels like they've conducted more tests than on the atom bomb, but still we don't know why he has fits. We also don't know why he stopped learning to talk at 18 months and now, aged 6 is developmentally 3 years behind his peers.

Be under no illusions. My child is not the most disabled in his school, not even his class. But I don't think it's the level of the disability that matter so much as how it affects the family. My son looks 'normal' so when he kicks-off in public people tend to judge me as a parent. He is a danger to himself and others and requires constant supervision. His health is better than it was, but is still a worry.  After much fight and stress he now attends a great school who do a lot to help him. But all this comes at a cost and having a disabled child (whatever their level of need) is a huge strain.

So I'm hoping to spread a little insight and honesty about what it means and if this strikes a chord with you, then feel free to get in touch.