“My big hand isn’t working!”
Hero had pulled her arms out of her seatbelt straps while we were parked up outside a shop. She manages to tuck her little hand beneath the straps of her 5-point harness and uses her little hand to push the second strap off the shoulder of her other arm. When I told her to put her arms back in the straps she slipped her baby hand back under easily. Big Hand, however, couldn’t get back in. It was too big to fit underneath the tight strap as easily as baby hand had done.
In her opinion her big hand, or her “normal” hand, simply wasn’t up to the job. It wasn’t able to perform the way her baby hand does.
And that there is the difference in our journeys – mine as a two-handed parent and her as a toddler with a limb difference. I might worry and see something as a problem to be solved; she sees only opportunities. I might be afraid – she has no inkling of fear. Where I see a mighty challenge to be overcome, she’s just getting on with her day. I might struggle to see how something could be done; she’s about to find a way. I worry I haven’t got a map; she’s just happily following her feet.
This difference in perspective is far from being a bad thing. For me as a mum it’s incredibly liberating. Knowing that, just because I can be scared and sad for her, doesn’t mean that she is. She’s feeling none of the negative and instead has a blank canvas of possibilities ahead of her, with no sense of apprehension. The realisation has filled me with a confidence that I had to earn and develop over my daughter’s first years of life.
Avoiding the negativity
A fellow Reach parent said to me a few months ago that her now older Reach child didn’t like coming to the AGM and family weekend anymore because he didn’t like the negativity of the parents who gathered there.
I’ve also had a limb-different adult message me in relation to one of my posts to say, quite kindly but assertively, that my worry was entirely misplaced. There was also recently a post from diversity speaker and campaigner, Nicole Kelly, explaining how she felt about sitting in on a parent’s panel at a limb-difference conference in the USA.
I remember walking out of that first meeting SO HURT and SO MAD at all of the parents. How dare they cry about their beautiful child! – Nicole Kelly
I feel, and I can’t speak for everybody but I’m sure I’m not alone, that my daughter is one of the best things on the planet. Her five fingers are perfect. I wouldn’t change her for the world. I would never have even considered doing so – even in my darkest moments years ago. I am, without a doubt, her biggest champion and I have to work very hard at curbing my bragging rights, at which I don’t always succeed!
So it was awful to think that a child (or adult) might feel that somehow, parents were disappointed in their child. That the parents’ feelings were a reflection upon them as an individual with a difference of any kind.
Having a difference makes no difference
Perspective is essential and of course a parent’s perspective is going to be totally different to the child’s. Isn’t it always, without or without a difference or disability involved? You might both be looking at the same window, but the child is looking at it from one side and the parent from the other.
Please understand, we’re not meaning to be negative, we’re just worrying. It’s a parent’s lot to worry. Having a child with a difference actually makes no difference. We might worry about whether our child could achieve something they themselves never had a moment’s doubt over. We might worry about other children being rude or about our child being left out, when all they want to do is play.
But doesn’t every other parent also feel the same, to different degrees?
We worry about whether or not our child is wearing a coat when they simply can’t feel the cold. We worry about whether they’ve tied up their shoe laces when they’ve not got a moment to spare.
It’s a parent’s job to see the threat where the child sees only fun. That is not to say that we think they can’t do it – it’s just that we’re frightened for them in case they don’t. We don’t want to see them disappointed or dispirited about their own abilities. We want them to see themselves the way we do – and yes, that might translate into a worry that perhaps they won’t. It’s a parent’s job to keep their children as fit and as happy as possible – so when your child has a difference of any kind sometimes we might worry a little bit more.
So if you’ve got a disability or a difference please know…
Your parents might cry from time to time
…but not because of you. Many cry because they know that the world can be a cruel place, as well as wonderful, beautiful and exciting. We might cry because we know that, at some point, you will likely experience discrimination. We cry because we don’t want you to face extra challenges and attacks on your self esteem. We don’t wish you were different from the perfect one you are; we just wish the world was.
We wish you wouldn’t have to face any more hurdles in life than the next child. We wish that disability wasn’t still feared or pitied in some corners of society. We wish that every difference was accepted without judgement. We cry because we love you more than anything else and we don’t want the world to ever shake or shatter the sense of self acceptance and love that you’ve hopefully built up under our gaze. We wish for you to grow up to be self confident and and to love yourself as much as we do – without having to earn or fight for that right.
A parent’s worry is not disappointment…
…it is simply a fear of the unknown.
It’s struggling to conceive how you might achieve something with fewer tools than they might have themselves. They simply can’t fathom how you might be able to tie your laces with less than ten fingers and it’s their privilege that one day you will show them. They worry about not being able to protect you from all the things they thought they would or could. It’s the worry that they might not be modelling the best reactions and responses to situations they’ve never had to deal with before.
I wouldn’t ever dream of changing my daughter’s hand. Sure, I don’t want her to face the extra challenges she might have to, but to me she is utterly perfect. She is beautiful and she is incredibly capable. I am her biggest champion and both revel in and encourage her growing independence. But still, I worry.
A parent’s worry is not an expectation of failure…
Our dreams for our kids are just as big as every other parents’, if not bigger, and we – better than anyone – know just how tenacious, talented and able you are. We see first-hand what you are capable of, what you overcome and how you throw yourself headlong into challenges that you didn’t even realise should have been hard. We’ve not lowered our aspirations for your achievements simply because you have a difference or a disability.
When I was pregnant I wrote about the sadness that my daughter wouldn’t be able to automatically share in her Dad’s hobbies of violin and hockey playing. Yet now I can’t help but grimace at that very idea. Why on earth can’t she play violin? Why can’t she play hockey? She might need an extra tool to help her, but that doesn’t mean that she won’t. Unless of course she’s inherited my sporting and musical ability – in which case there’s no hope!
My daughter taught me
But she was the one who taught me that. Before my daughter was born all I had were my worries and I needed to see her – in action – to show me just how fine she was going to be. I needed to see her with her friends celebrating and loving differences.
I needed to see her climb that ladder without so much as a hesitation. I needed to see her grab that wheelbarrow and roll it along without a care in the world – without any idea that anyone should even notice or care what she’d done. Climbing that ladder, opening that bottle or pushing that wheelbarrow wasn’t an achievement for her; it was just another activity out of many in her busy day. It was not even note worthy. There was no: “Mummy, look what I can do!” because to her mind there was nothing to see.
So if you feel hurt, or angry or frustrated at a parent’s expression of concern, at their tears or their fears – please remember: We are not disappointed in you. We don’t think that you ‘can’t’, we don’t feel we’ve been hard done by in any way shape or form. But we do worry about whether you’re wearing your coat out, just like every other parent. And we love – more than anything in the world – to be proved wrong time and time again; to be shown that, actually, it’s just not that cold outside.