I’ve been writing columns for a very long time, but I’ve never had anywhere near as extraordinary and moving a mailbag as I did last week, as a result of writing about CBeebies, Something Special and my daughter’s special needs. It confirmed something I already knew, and something that had been getting on my nerves for a while, namely that there exist thousands and thousands of parents of children with special needs, and yet that for some utterly mysterious reason, we are completely invisible in the media. It is as though we were contagious. We don’t exist.
I don’t quite understand why this should be, since we do in fact exist in vast (and, thanks to increasingly early diagnosis, growing) numbers, and since our concerns are pressing, whether they be about feeding difficulties, education, getting adequate support and advice, finding a suitable holiday destination or suitable toys, or simply about feeling that we’re going quietly mad with anxiety, sorrow, and sometimes, not to put too fine a point on it, blind terror.
Feeling isolated and alone is the first by-product of having a child with special needs, especially if you make the fatal mistake of Googling your child’s condition after diagnosis. Here’s my No 1 tip: don’t. Just don’t. You’ll end up feeling even more dreadful.
But — tadaa! — help is at hand, I hope. This is the first of a regular column about trying to negotiate the minefield of special needs while remaining sane. The idea, which is elastic, is that you write to me at the e-mail address at the end, sharing your experiences, voicing your anxieties, passing on your advice, letting me know what you’d like me to write about, pointing out some useful thing or toy or buggy or website, or just saying hello, and I’ll jumble it all together and try to make a coherent, and useful, whole. The results will be allocated a special spot on The Sunday Times’s website, for parents to use as a database.
But I need your input. I am far from an expert on special needs. In fact, I know very little that doesn’t directly apply to my own child; besides which, “special needs” is a vast, rather lazy umbrella, incorporating everything from minor and remediable hiccups to cerebral palsy.
I’ve obviously learnt a great deal from medical professionals but the really useful stuff — the stuff that helps day to day, whether it’s a piece of concrete information, a suggestion, a tip-off or a friendly e-mail — has come from other parents. The idea is to create a similarly helpful and friendly forum on this page. Which is why I need you (and, without wanting to sound like a tragic hippie, we all need each other: strength in numbers, and all that).
My experience is limited to my daughter Nell’s condition. For the record, she was born with a heart condition called truncus arteriosus, which necessitated five hours of open-heart surgery when she was three months old.
She will require further surgeries as she grows, though (hallelujah) we were told last week that the next one isn’t likely to take place for a few years.
She also has DiGeorge syndrome, aka 22q11 deletion, a chromosomal abnormality. This can have 180 different manifestations, from the seriously gruesome to the barely detectable. At the moment, our most pressing concern is that her speech is severely delayed (she may need surgery on her palate when she is older): we use a form of sign language called Makaton with her.
She was also born without a thymus (the thymus ordinarily produces T-cells, which fight infection) and even though an adequate number of T-cells are cleverly producing themselves in her bone marrow, her immunity is not all it might be (and, naturally, her two older brothers come back from school honking and coughing throughout the winter. Heigh-ho.) She has a slightly wonky head (characteristic of the syndrome) and she especially likes tigers. She is bright, hilarious, completely adorable and also humbling.
I don’t want to sound too Pollyannaish about things: I know about the difficulties she, and we, will face in the coming years. But I absolutely mean it when I say her father and I feel blessed to have her, and that our lives have been unimaginably enriched by her existence.
Of course, we are lucky. Things could be a great deal worse. The first person I ever met who knew about DiGeorge has a middle-aged sister with the condition. This sister, through fear, shame and ignorance, has been in an institution since she was a child. We have enough money and we have help, which is why I don’t just want to sit here like a creep evangelising about my good fortune: I’m hoping to write about other people.
However, I do know what it’s like to sit by a hospital bedside in a cold sweat of terror as everything suddenly starts beeping and doctors run in, shoving you out of the way, and this going on for weeks on end. I know what it’s like to expect a perfectly healthy baby, only for it to be born and for you to have your world collapse. I know how lonely it can be to find yourself suddenly the parent of the kind of child nobody ever imagines having, or wanting. I know about the anger, the rage, the odd sort of grieving process that occurs . . . and I also know about coming out of it the other side, not quite skipping with joy but not a million miles from it, either.
All of this was unexpected: special needs are democratic, and don’t affect a particular type of parent. I’m the kind of person, as one correspondent pointed out last week, who, in my novels, bandied about words like “spastic” and “retard”, and thought it was quite funny. (I went so far the other way as a result of having Nell that I recently got in a flap about the title of my next book, on diet, because it featured the words “idiot-proof”. I’ve calmed down now.) In the past I tried to be as nice as possible when I came across special needs children, but I didn’t know what to do, and felt something akin to embarrassment. I thought such children were in such a minority that I could get away with shutting my eyes, wishing them well, and swiftly moving on.
They are in a minority, of course — but it’s not as small as you’d imagine. One of the nice things about being diagnosed is that you suddenly realise that there exists a parallel world to the one you’ve been living in all these years: it’s just that you’ve never noticed.
We tend to look ahead as we go about our lives. I realised that if you look very slightly sideways, you discover a vast slew of people in exactly the same kind of boat.
There are hundreds of thousands of us. That doesn’t necessarily make it any easier, but it does mean that none of us should have to feel alone. Please write to me, and let's try and do something positive and useful.
You can contact India Knight at sospecial@sunday-times.co.uk
