I have been stewing all afternoon. I feel angry and sad in pretty much equal measure. And I am incredibly cross with myself for feeling this way. For blowing something out of proportion. But someone said something to me today that, without any malicious intent, hurt painfully. Maybe writing this post will help me work out why.
There are plenty of terrible things said to parents of children with additional needs every day. The ‘what’s wrong with your child?’ (the looks usually hurt more than the words, in my experience) will be familiar to most. ‘Oh you’ve got a naughty one have you’, we had several times before we were able to take our GoTo seat out and people realised that Boo wouldn’t sit in the high chairs they offered us not because he was naughty, but because he just couldn’t sit in them.
Then there are all the things not said directly to you, but you read in the papers or hear on the news. The daft things Councillors who have now had to stand down said, or the use of the ‘r’ or ‘s’ words heard when walking down the street.
Don’t get me wrong. All of things make me mad. Hopping mad. But I know they come from a position of ignorance. They don’t hurt me, even if they offend deeply, because the offence is against standards of human decency rather than me personally or even Boo. If they ever said these things to his face, well, let’s just say that would be another story.
What was said to me today is a totally different kind of comment, uttered by a well meaning person. Maybe that’s why it hurts more.
I won’t go into all the details for fear that somehow, someday it might get back to the person in question. And I wouldn’t want her to be as upset as me.
Let’s put it this way. I was in a therapeutic context. As Boo was not fully co-operating with the said therapy for a few minutes (and only a few minutes, he worked so hard), I tried to explain why. It was because different therapies he’s engaged in had suggested different means to the same end. He had mastered one technique (and how – more on that soon, because it’s great news!!) but as a consequence, he lost interest in the other. I said ‘Boo can’t get his head around doing this in two different ways, I think.’ I was told the other technique was wrong (although other professionals would, no doubt, disagree). I am quite open-minded and am happy to try both, but piss on one of our inchstones and it makes me sad. Every gain made in Booland gets celebrated and we were happy about his progress. To be told it was valueless made my heart sink.
And then, plunge. It hit the floor with these words: ‘And I don’t think you should use the word “can’t” around Boo. It is terribly demotivating and you are setting limits on his potential. He’ll pick up on that.’
And so, I found out today that the unthinking ignorance of the great unwashed when they make ill-informed opinions about those with additional needs rile me greatly and galvanise me to try to change opinions. But accuse me of demotivating my son, of setting limits on his potential and well…You have me beat. You may just as well have run me with over with a car.
The Boos are why I get up every morning. I smile and inanely encourage through every therapy session at home or with healthcare professionals. Frankly, sometimes I don’t feel like it at all. Sometimes, after three hours sleep I want to go back to bed. Or eat cheese and drink wine. Or run away. Sometimes, I want my life to be less like Groundhog Day but without Bill Murray to make me laugh. Sometimes, I don’t want to try to teach my son to roll for the 600th day in a row.
But I never give myself a break. And I never fail to summon every ounce of me to encourage Boo. Because he never gives up, I don’t give up. He has achieved so much. And I don’t take credit for that. I know it’s down to his determination and luck. But it is partly down to me, and all the hours and hours I spend every week doing the therapy, doing the research. And smiling when I don’t want to.
I am not a perfect parent, but I try harder than is sometimes good for me. I have never been so motivated about anything in my life so much as my desire to ensure Boo has the best opportunity to reach his cognitive and physical potential.
That anyone could say anything to the contrary to me or any parent of a disabled child, knowing how hard we try … well, let’s just say I can think of few things that could have hurt me more.