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…

Accepting My Child Will Never Walk

Why walk when I can float?
I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  

I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?

Mind over matter and all that!

"I told you - I HATE standing!"
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or sit or talk and he's perfectly happy that way. He's nearly 6 now, and for years I have beaten myself up, hoping that this therapy or that exercise would get him to do the things that just didn't come naturally to him. There's so many inspirational stories out there: the child whose potential was unlocked through horse riding, the boy whose parents spent hours (and millions) on this therapy and he now talks, the girl whose mum mortgaged the family house, brought her to America and she now runs marathons and gives motivational speeches whilst running a billion-dollar company.  Well maybe not, but you get the idea.

When Hugh was 1, I was told it was unlikely he'd ever sit or walk. It seemed ludicrous at that age that anyone could make such a judgement, particularly not knowing Hugh's specific condition. Yet that paediatrician had seen hundreds of children in her lifetime, enough to make a judgement call based on the evidence presented to her (I'd asked for he opinion and she gave it honestly- she wasn't trying to be a harbinger of doom). 

"Sitting by myself? Overrated!"
And people said 'just you wait', 'he'll show them' and 'take no notice' or 'that's ridiculous' and 'what does she know?'.

I was fed all the stories about this inspirational child and that inspirational family and this mother that spent every single waking hour of the day doing Physiotherapy and that child who'd defied the odds.

And I tried, I did.

I took him to donkey riding therapies and hydrotherapy. I spent hours each week singing songs associated with actions designed to teach him to roll or to stand. I played music and rubbed his feet with different textures. I sat in sensory rooms and hot and sweaty dark dens with flashing lights, trying to get his eyes to focus. I ignored his protests, his fake crying and his forced sleeping and I held him upright against wooden bars, moving his legs willing them to step independently. I held him over a huge blue rubber peanut shaped ball despite him having a raging temperature and a chest infection because we'd fundraised for this £600 assessment and it *might* just be the treatment that would help. Maybe we didn't go to America. And maybe I should have tried a hypobaric oxygen chamber. Who knows what could have happened? 

Or maybe, just maybe, that my child isn't the one who is going to defy the odds. 

Maybe he's going to be the one who doesn't walk, or talk, or sit, just like predicted.

And maybe that's not my fault. Or his.

"Rolling? Nailed it!"

Because surely, for every cancer-fighting marathon runner, there's a hundred more feeling like shit, barely able to make it to the toilet to vomit.

And for every child who defies the odds and doesn't just walk, but goes to university and becomes solicitor (honestly I was told that a child *just like Hugh* managed that) there's a hundred more that, well don't.

And it's not because they didn't try hard enough. Or their heart wasn't in it. Or their parents didn't love them enough.  Or their mum didn't believe in them. Or they didn't have that fighting spirit. It's just... Because. 

Because that's the way it is.

It's not about giving up or giving in or being limited by other people's or your own expectations. It might not be newsworthy or inspirational but sometimes just plodding along, doing what nature intended is fine too.

Here's to not defying the odds. To not achieving the unachievable.

Here's to acceptance.  

"I would MUCH rather just chill out in my beanbag anyway!"