Special Needs Parenting: My Biggest Disappointment…

Well it’s not.

Don’t get me wrong, I’d never wish for her to be disabled.

This isn’t the path I’d have chosen for her, for me, for any of us. But now we’re on it, we’re making the best of it.

No, no my biggest disappointment is my parents.

My disabled child’s grandparents.

Never did I imagine they would have been such a disappointment.

Never did I imagine that they’d so totally and utterly let her down and let me down.

When we’ve embraced it, they’ve run a mile. When the going got tough, they got going.

The early signs were there that my parents wouldn’t feel ‘comfortable’ with the fact that they had a disabled grandchild.

They struggled to interact with her in any way. My dad even refused to lift her.

It was difficult to ignore comments like ‘This sort of thing never happened in our day.’

‘No mum, it did, it really did. Previous generations just locked their disabled relatives in institutions to be forever forgotten.’

Leaflets about our daughter’s condition were pushed to one side, left unread and eventually dropped into the recycling bin.

I was unfriended from Facebook because I posted too much about special needs issues.

Discussions about her future were quickly closed down, never to be spoken about.

In my family, the rules are simple; do not draw attention to yourself & do not make a scene.

That’s kind of impossible with a child with special needs. Loud noises, flapping and strange behaviours are usually part of the package.

You learn to grow a thick skin, ignore the stares and get on with living life the best you can.

They just couldn’t do it - she was an embarrassment to them. And over time they stopped coming out with us and their visits to our home got less and less.

Excuses were made at Christmas because it was no longer the relaxing event they expected it to be. Birthday cards were put in the post and not hand-delivered with a present as they had been in the past.

Ten years on and we very rarely see them.

It’s sad isn’t it?

I’ve come to terms with it, it still hurts but not as much as it used to. But what I find difficult to comprehend is how they managed to do a fairly good job with me yet could not step up to the mark and be a great grandparent.

It’s not just their practical support I would like, I miss their emotional support too.

They must’ve given me the strength to be a good special needs mum (even if I do say so myself) so how come they are so lacking when it came to being a special needs grandparent?

I love to see grandparents commenting on blog posts, on Facebook, in forums.

If you’re a special needs grandparent reading this post - I salute you.

The very activity of reading this shows you’re involved, you’re interested and you want to learn more.

Maybe you torture your son or daughter with therapy ideas, email them constantly with toys suggestions or articles they might be interested in.

Perhaps you drive them crazy, but please keep doing it because of the alternative… well, the alternative is being like my parents - in denial.

We’re a lovely family, me, my husband and our beautiful daughter who just happens to have special needs.

There’s a lot of love in our family, a lot of laughter, a lot of good times. It can be loud, it can be manic and it can be scary, this special needs journey but we’re determined to have fun along the way.

I just hope my parents don’t regret their decision not to be a part of our family. I hope they change their minds before it’s too late.

Our daughter is our life, our love, and our greatest achievement.

So no her disability will never be my biggest disappointment.