Raising a child with a disability: whose journey is it, anyway?

Sometimes when I write what’s on my mind I do wonder ‘who will get it’?

I feel that at least some in my community may get it. And when I say my community – I mean our community of being a parent of a child with a disability.

There are definitely things you would only possibly know should you belong to this group.  

As my son grows I reflect more often on the loneliness and confusion I felt in those formative years. The years when I was hearing – ‘the first 5 years are the most important!’ and ‘watch for those tell tale signs to see if your child is on the right track with their development!’

I was very confused!

I had twins – both had medical issues relating to their prematurity and weren’t really ticking any of the boxes on these things about development I was reading. But they were travelling as well as could be and we were quite delighted when they would achieve a new little inchstone.

I felt, however, that our little gains were not given the recognition and applause they should have been. For example, the medical profession was always seeking more – some would awkwardly say ‘oh that’s great…..’ and then silence would follow. More often than not we were made to feel that our kids weren’t  as ‘successful’ as others because they were travelling their own path. That they were somewhat missing out on ‘something’ and that as parents, we must be missing out too.

When I look back on this, I think how ridiculous it was that I felt this way and how I took others awkwardness on board!

I know now, of course, that whatever timeline our children are on, it is theirs’ alone. 

I wish I could have given myself a bit of a break in those early days, but I am trying to make up for it now – to set the pace for the years that are yet to come; to celebrate the achievements that lie ahead and to absolutely not own other people’s awkwardness!

We are in a very special and humbling position – raising a child in a world where they may tick only a few, or maybe none, of the boxes that show they are ‘on the right path’. But their development is that, ‘theirs’. It’s their path, their journey and no-one should get to judge and define that as ‘less than’.

On this journey I believe we change as parents because we learn over time to let go of what is deemed ‘age appropriate’. We grow into this new parenting role that no book can ever tell you how to handle!  (and if you do find the book, can I borrow it?!)

If you are reading this and some of it resonates with you – I encourage you to do the same, to let go of the expectations that are unrealistic and put undue pressure on you and instead to enjoy these unique, rare and very un-mainstream moments that we have with our children.

The ripple of change starts with us – let’s do this!

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