Few words, in my experience, offer a more stinging (if metaphorical) slap in the face to parents of children with developmental or physical or cognitive challenges than ‘normal’. Soon after our lives have changed forever, we are encouraged by well-meaning friends and family to embrace the ‘new normal’ that is prematurity or additional needs. We can call it Holland, if that makes us feel better. It doesn’t always. But the ‘new normal’ gets accepted because frankly, what choice do we have?
Then after a while, if you’re anything like me that is, you find you can’t utter the word ‘normal’ any more at all (‘neurotypical’ is my current word of choice). ‘Normal’ sticks in your throat and if you manage to expel the word from your diaphragm you feel this instinctive urge to move your fingers in that ‘air quote’ kind of way, even though instinctively you throw up a little bit in your mouth when anyone else uses air quotes in your company.
Because you realise that the word ‘normal’ is a sham, a lie that attempts to cover up the beautiful complexity and messiness of life. And it’s not a white lie. It’s a big, dark, vicious lie that those who lay claim to being ‘normal’ use as a weapon against those who just happen to have bodies and minds that don’t conform to rules arbitrarily created in the mists of history.
I despise ‘normal’. But all the same, sometimes, all I want is a little piece of it. I’m not saying I want Boo to be anything other than the amazing, funny, beautiful and smart little boy he is. But I would like a bit of normality in our life. The ability to do things others take for granted but that are very difficult for us. Like shopping in a supermarket without crippling my arm by crooking it through a handbasket and trying to steer an impossible heavy buggy with a mind of its own at the same time.
Or going to a coffee shop, cafe or pub, or just to a friend’s house for a cup of tea. You see, Boo can sit for only very short periods independently, but not reliably. And even so, to do this, he needs to sit cross legged or with legs at a 90/90 angle. I haven’t found a single commercial highchair he can sit in. (I have tried lots.) A brave attempt to have a family meal out on New Year’s Eve involved much staring as we tried to wedge Boo in the lovely wooden highchair provided with rolled up and strategically placed picnic blankets. When after 5 minutes, he inevitably slumped and we put him on our laps, indigestion and more than usual back pain ensured. Dining out has become contact sport for us.
The easiest thing for us to do is not to do things like this. To give up on these things. The little things in life. The things that are sometimes not even all that exciting (online grocery shopping will always come close to the top of my list of the world’s single greatest achievements- really, I hate supermarkets) but which become impossibly seductive when you can’t do them any more.
But now, we can.
The seat is a liner, which is strapped to the back and bottom of dining room chairs, trolley seats or even certain playground swings. The child is secured in it by a five-point harness, which, when tightened, also brings the low sides round the child’s pelvis and fixes it.
I have tried a seat liner/insert before. It was made by a different manufacturer. It cost a fortune, but I would have got the money together to buy one if it worked. But it didn’t. I was sure it would. But Boo’s trunk was too wibbly. It couldn’t support him. Thank goodness I didn’t buy it. Thank goodness a friend had one and kindly let me borrow it before I parted with Boo’s precious DLA money.
I didn’t want to make the same mistake with this seat, but ever since I saw a description of it on Special Needs Jungle and then in Cerebra‘s newsletter (Cerebra receives 7% from all sales) I wanted one for Boo. I wanted it to work for Boo. I wanted it to make things possible that were a pain before. I saw it as our ticket to a piece of normal. To visits to friends’ houses and the High Street. The fabulous videos on the website looked so good. Too good to be true. Surely this couldn’t work. It looks so simple. So slight. Since having Boo, I’ve come to think that every piece of effective equipment needs its own house extension.
But tweeps and Facebookers said that they had heard that this might work and maybe I should try it. And so I contacted our OT to ask if she could get me one to try. She had never heard of it. She says reps don’t visit our hospital routinely. That it would be difficult. I gave up. And then I contacted Leckey (who were incredibly prompt and helpful in their reply to my email) and after expressing my concerns, they told me of their ‘unsuitable goods’ policy. If it didn’t work for Boo, as long as we sent it back in the original condition, we would be refunded. I couldn’t pass up on that.
And this is what happened.
This is Boo, sat on on of our dining room chairs. His hands are blurred because he can move them. Because the seat gives him enough support in his marshmallow trunk (a trunk so low tone that Lycra garments have been recommended) to use his often very stiff upper limbs.
This isn’t the best photo in the world. I have others. Lots of them, and they are lovely, but this is the only one I could crop so his anonymity could be retained. The lighting isn’t right and the focus and composition leave lots to be desired.
But this, for me, is a photo to treasure. Because it isn’t just a blurry picture taken on an Iphone. It’s a little glimpse of normal.
Watch out High Street. Here we come!