Tag Archives: prejudice

This is My Child: Why I’m Supporting the Mumsnet Campaign

This is my child. I call him (on the blog anyway) Mr Boo, or Boo for short. He is 16.5 months old. Well I mean he is and he isn’t. He was born 11 weeks early, so he’s 14 months actual age. He is the younger brother to Sissyboo, who is 5 and marvellous. He is one of the happiest, smiliest children you’ll ever meet. He has blond hair and piercing blues eyes. He also has bilateral brain damage (PVL) caused by him contracting meningitis at 3 days old.

The brain damage means that he has likely cerebral palsy (I say likely, we are 99 per cent sure but are awaiting the results of other tests for other, worse things) and epilepsy (in his case the ‘catastrophic’ infantile spasms). At 16.5 months he can sit, roll, crawl or walk. He may do some of these things eventually or he may not. He is beautiful even though his life is hard.

This is my child. But when others look at him, and boy have they started staring recently, they see all sorts of things. Some glimpse the challenges of his life. The many weekly appointments, the daily therapies, the disrupted nights, and some feel sorry for us. I hope they can also see how amazing it is he’s here. That he survived. That he isn’t cast down by his difficulties. That he is tenacious and inspiring. That he is a little boy. That he is a toddler, he just can’t toddle.

Others see different things. Sometimes I have to guess what they’re thinking. Sometimes they just go right ahead and tell me. Like the woman in the park, where my daughter was playing while I worried her brother might never be able to, who after I answered her question about how old he was (I always give both ages, so she knew he was premature) said ‘Haven’t you got him sitting yet?’ No:  and it’s all my fault, right? Because 1.5 to 2 hours of physio a day on top of appointments, feeding, looking after him, oh and his sister, and my job and sometimes remembering to sleep and feed myself isn’t enough. Because I should be able to slap the metaphorical holes in his brain on the wrist and tell him to do what they’re told.

Then there was a waitress in a cafe who when I said we didn’t need a highchair for Boo (he can’t sit in them) said ‘Oh you’ve got a naughty one then’. I didn’t know whether to do her a crash course in premmie/SEN baby parenting, run out or cry. I stayed, cried inside and spent a horrible evening sobbing when I got home. And his sister was there when she said it. She was angry. As always, I should have taken my cue from her. She is 5 and as I’ve blogged about before she could teach so many grown ups about how to deal with ‘disabilities’ or ‘abilities’ as she calls them.

I could go on, but you get the picture. These experiences and so many others like them are why I fully support the Mumsnet This Is My Child Campaign. I have read so many wonderful and powerful blog posts and tweets from its supporters documenting the prejudices they face, as if their kids’ conditions weren’t enough to handle. Much of the focus has been on invisible conditions such as ASD, ADHD and SPD. I fully understand this. My oldest friend has a 6-year-old recently diagnosed with ASD and another close friend has an 11-year-old diagnosed with Aspergers and watching the last decade of her battles with 4 different LEAs has been heartbreaking at times. Boo’s epilepsy and neurological problems mean he is at ‘high risk of cognitive impairment’, as the letters say. Children with physical disabilities face different challenges and are not invisible in the same way. But the prejudice is still rife. The myths are no less prevalent. The words still hurt.  And the heartache is as real.

So please get behind the This is My Child campaign by writing your own blog post, contributing to the online forums or tweeting your support. This is my child. And, if you do so, he and I will thank you for it with all our hearts.

This is My Child Mumsnet

You Can Stare. Just as Long as You Look

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.