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.