Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

These Are No Ordinary Wheels


These are the 'pimped up' wheels of Hugh's R82 Kudu wheelchair.  A friend designed them especially for Hugh - they're completely one of a kind.

These wheels catch the eye of many a child (and adult). They run over to point out their favourite super hero and try and name them all. (Go on try - most people will get 5 easily, some 6. If you can get all 8 you're a true super hero fan!- answers at the bottom). If children are staring (as sometimes they do), perhaps trying to work out why he's sitting and not running, rather than feel awkward I can point to the wheels and say 'have you seen his cool wheels?' It's an icebreaker. For the children and their parents.

We chat about Hugh's favourite super hero (it's Captain America) and the films we have seen. Throughout it all Hugh smiles (or sleeps) but there's a connection there. This is a little boy who likes superheroes. Not a little boy in a wheelchair or a little boy with a feeding tube. He likes superheroes, just like me. 

I love that about these wheels. Hugh can't talk but they do the talking for him. They start the conversations for him. They help people see him, first and foremost, not his disability. They make being in a wheelchair cool. They help to include him. 

The thing is though, Hugh grabs the wheels a lot while we're walking. I'd hoped he'd self propel slightly but he's not reached that stage at all. Instead he just holds on. And that's dangerous, because the wheels are turning. So we're looking at different wheels. Smaller wheels. Wheels he can't reach. But also, sadly, wheels that won't have super heroes on. 

No, these wheels don't just get Hugh from A to B, they're a conversation starter, they're a stare-explainer, they're a connection with his peers, they aid inclusion, they're the start of friendships. 

I'll be gutted when they go. 

 
Hugh as his favourite - Captain America

From the top, clockwise: The Flash, Superman, Captain America, THe Hulk, Iron Man (it's his power source - most people get stuck on that one), Spiderman, Green Lantern (another tricky one) and Batman.

How many did you get?