Lewis’ Story

Posted by:

It was all quite sombre for a few days. In fact, without wanting to sound too dramatic, there really was something rather funeral-esque about it. All the conversations seemed to involve standing up and talking in serious, slightly hushed tones, and there was a definite sense that telling jokes or having a laugh just wasn’t appropriate.

Except that no-one told Lewis that. He sat in the middle of all the sombre grown-ups, head tilted to the side slightly, and dribbled, flapped, shouted, ranted, smiled and laughed as if nothing had happened. (As any self-respecting one year old would.)

That’s when I decided that crying about Lewis’ diagnosis of Fragile X would have to wait until Lewis felt the need to cry about it. He has cried about plenty of things since (mostly not being allowed to put the TV on at 3 am), but not the Fragile X as far as I can tell. In fact, it doesn’t seem to have bothered him at all.

Born in Epsom in 2003, the first few months of Lewis’ life involved reflux and very little sleep and are best not dwelt upon. But, generally, all was well for the first year. There was just a nagging doubt about the fact that everything seemed to be happening rather slowly. He was 14 months old and not really showing any interest in standing up, or even sitting up properly, or talking or eating real food (anything involving mixed textures). We assumed that it would all sort itself out in time, but a consultant suggested blood tests to investigate his poor muscle tone.

So that led to Fragile X being diagnosed pretty early on. Not knowing much about it kind of helped as it took a little while to sink in. In fact, its still an ongoing process isn’t it? We still don’t know quite how independent he’s going to be in the future, so we still don’t know exactly what is sinking in. We are, however, definitely past the “will he go to university?” stage.

Soon after his diagnosis Lewis began at JOG where we received incredible care from all the therapists; and much needed support and understanding from the other parents and carers. I’m not sure where we would be now had it not been for our experiences at JOG – it became a bit of a lifeline for us.

Somewhere along the line Lewis was confirmed as being on the autistic spectrum as well. By this time, he had been awarded quite a collection of diagnoses – mild ADHD, dyspraxia, etc. We were lucky enough to get him into ‘the little group’ (a pre-school for children with learning disabilities and communication disorders) in Epsom – the marvels of the little group are another story again. As I write this Lewis is attending a special needs school in Guildford. Gosden House is proving to be another great move for Lewis – this gentle and happy school is a perfect match for our lovely little boy.