Here are five and a half things that my children with special needs have taught me:
That this moment is all we have, make the most of it: For me, getting washed and dressed in the morning is a chore to be got through as quickly as possible so I can move on to doing all the important things I have to do today. But Freddie makes the most of it as an opportunity for pleasure and fun.
He likes to have a freshen up in the bidet just for the pleasure of sitting in the warm water. Unconcerned about the need to be at school for nine o’clock he allows himself to be totally absorbed in the moment, savouring the sensation.
As I fill the basin so he can wash his face, he seizes the chance to play a game – aiming his flannel at the water from the other side of the room to see if he can get it in first go.
The walk to school is an event in itself: there are puddles to splash in, walls to balance on, dogs to stroke, their owners quizzed about the dog’s name, breed and age.
That true love is not expressed in words or gifts: The love between my children and me isn’t blurted out at the end of a hurried phone call, it doesn’t come wrapped in extravagant paper and bows.
It’s in the middle-of-the-night call at a moment of crisis, when there’s nothing practical you can do to help at that minute, but they just want to hear your voice, hear you reassure them everything’s going to be okay because together you’ll work something out.
It’s even in the bite they give you at a moment of utter frustration that they can’t express, because they feel safe with you, they know you won’t retaliate, they know you’ll forgive them, comfort them, help them calm down.
That I am more resilient and resourceful than I ever guessed: Unlike ‘typically-developing’ children who do come with a manual of sorts – in the form of the advice that can be given by family and friends who were parents before you – a child with additional needs comes with no such guide.
And when no one in my family had any experience of parenting a child like mine, and when support from professionals was thin on the ground or non-existent, I have so often had to make it up as I go along, and work out for myself how to help and support my children.
And I’ve done it – usually from a somewhat bewildered standing start. I think I deserve a sticker -- is there a sticker for this?
That the phrase ‘to die for’ is utterly ridiculous and annoying: I know it’s just hyperbole and not meant to be taken seriously, but just how ludicrous is it to suggest that any chocolate based dessert, pair of shoes or new handbag, any material thing on this earth, in fact, is ‘to die for’.
Your children, on the other hand, now there’s something worth dying for, and, if you’re the parent of a disabled child, the fight to secure their rights and their future is likely to be one hill that you’re more than prepared to die on.
That perfection is a subjective concept. You might look at my life and think; ‘No way, I don’t want a kid like that – if I get pregnant, I’ll have every test going; hell, they should invent more tests!’ Let me tell you, anyone who confines themselves only to accepting people who are ‘normal’ into their life risks missing out on an awful lot.
In my eyes my children are perfect, just as they are. And they are the perfect children for me.
No -- actually, perfection is not a subjective concept, it’s a myth.
Nothing is perfect -- no person, no object, no situation.
So, if it’s the perfect life you’re chasing then you’re going to be disappointed. It doesn’t exist.
Once you’ve realised this, though, a good life -- a happy and contented life -- is much more easily achievable. That said, my children will always be perfect in my eyes simply because they are exactly who they were meant to be, and they have brought so many joyous and unexpected things into my life, which I could never have imagined before they came along.
Which brings us back to the first point – making the most of what’s right in front of you.
So, to sum it all up in a nutshell, I think that the most important thing that being the parent of children with special needs has taught me is what my priorities are.
They’ve taught me lots more besides, but this is a blog post, not a novel, and I’m sure your coffee break is nearly over, so we’ll leave the rest for another day, another post: or perhaps a whole series of them, because learning is a lifelong process for all of us.