One of the great pleasures of being on holiday is experiencing different places and being out of your usual dull old routine. But when you have a child with additional needs, being out of your routine presents certain challenges. And it’s not only because children like Boo often thrive on schedules.
No: it’s also because when we’re in our usual environment, Boo’s difference is old news. In the school playground, hospital, local library, I might get asked how he’s doing, but I don’t often get asked now what’s wrong him. Well, at least not as often as I used to.
On holiday … well Boo is going to stick out like a sore thumb. Few people have the nerve, I mean guts, no, I mean nerve, to say what they think when they see Boo. Most just stare.
There are lots of reasons to do this, of course. Mostly it’s because he is extremely cute. He has huge, piercing blue eyes, a fabulous smile and an infectious laugh. Then there’s his glasses (when we can keep them on his face, that is). These add to the cute factor, especially when he does his baby Professor, I’m going to look at you over the top of my specs face.
But the glasses are often the first sign of difference people notice. A one-and-a-bit-year-old doesn’t usually wear glasses. But hang on a minute. Is he a one-and-a-bit-year-old? Because if he is, why does his trunk look like it’s made of marshmallow. Oh look he can’t sit. Or crawl. What’s wrong with him? Are his parents just crap or is there really something wrong with him?
And then the looks morph. To curiosity. Or worry on our behalf. Or pity. Or judgement. Or prejudice.
I’ve had some time to get used to this, but The Grumposaur spends much less time out and about with Boo and hasn’t. He experienced it recently at our local park, where we had to hold Boo in the baby swing or he’d flop around like a teddy bear. The Grumposaur found it so hard. He said he didn’t ever want to take him out again. To protect him. At home we can pretend things are normal. Out, we can’t.
I find the stares difficult and I too want to protect Boo, not so much from others’ ignorance and stupidity because I think we can deal with that, but I want to protect him from internalising an impression of difference or otherness that could wound his sense of self.
At the same time, though, I don’t want to retreat or to wrap him in cotton wool. I want to show him off, to shout how proud I am of him.
And actually I don’t mind people looking at him, so long as they see him for what he is and challenge their perceptions of prematurity and disability.
Here’s what I wish others might notice:
1) that Boo is the world’s happiest baby/toddler who doesn’t toddle
2) that he is more determined than most people you will ever meet
3) that the things he can do (hold his head, manipulate objects, reach and grab) are small miracles and none of these things came naturally to him
4) that he has been through some of the most awful experiences you can imagine (prematurity, sepsis, meningitis, massive brain bleeds, infantile spasms, the appalling side effects of very high-dose steroid use) but don’t tell him as he doesn’t seem to know he should be miserable
5) that he loves his family and is loved by them more than you can imagine
6) that he was premature and has disabilities but he is not these things
7) that neither he nor we need pity, but if you want to spread awareness of prematurity or special needs or just treat Boo kindly then we will be fast friends and I will be forever grateful
8) that Boo isn’t defined by his difference but by the fact that he is amazing.
So stare if you like, just be sure to look at him.