It seems like quite a strange thing to me, but when you are a parent of a child or children with an additional need, the world and his wife feel that it is their duty to dictate to you exactly how the whole parenting thing should be done. Who would have thought it? Such a difficult job, with no two children being the same, and no two family circumstances being the same, but still, everyone knows exactly how it should be done! And woe betide the parent of a disabled child if she should have the audacity to have faults! Perhaps not to be too enthusiastic about cleaning the skirting boards or to enjoy the occasional night out. Tut, tut, and she has a handicapped child! You’d think she’d know better!
I remember my first Portage worker (Portage is a service in the UK whereby a member of their staff makes weekly visits with unusual toys to get the children going on the old development through play). She was lovely, this lady, but had a rather worrying habit of gossiping about the other mothers. One story sticks in my mind, a little girl with Downs Syndrome who was one of her regular clients. The child was none verbal and often made a gruff sound in the back of her throat, in lieu of language. ‘We think it’s because she’s been left on her own with the dog’ my mentor mouthed, confidentially. Now even as a novice mother of a disabled child, this worried me on a number of points. 1) Surely if there was any evidence that the child was left on her own with a nanny dog like something out of Peter Pan, then services would be intervening and not just gossiping, and 2) what was this lady saying about me, post visit?
This is just one of a number of examples that I have witnessed where it seems that professionals have not evolved from the basic need to find the culprit. Why is this child disabled? A drugs baby, perhaps, or the result of inbreeding? A vicar’s wife who ran the local toddler’s group took exception to my breastfeeding eighteen month old Rosie whilst pregnant with Daisy. When I first timidly ventured out into the world with my newborn, not quite having the words or the confidence to tell people that Daisy had some kind of a syndrome (at the time this vague diagnosis was all the information I was armed with) this lady crossed her arms, tutted and said ‘Well how many times did I tell you to stop breastfeeding Rose?’
I could go on all day with these examples. I won’t though because readers would either become bored or outraged.
I don’t mind now. For myself, I truly do not care. I have developed the skin of a heavily armoured rhinoceros. I implore professionals, though, and friends and relatives alike to please think carefully before dishing out advice, anecdotes and ‘I told you so’s’ to mothers and fathers who are emotionally raw, extremely sensitive and only just coming to terms with the fact that their child is different.