Claire has a great post here about bringing her daughter, Sophie, to a birthday party and, well, it does not turn out great.
I gave in to “advice” from people who think they know better and from people who think all disabled people find pleasure in being surrounded by a crowd because it’s “normal”.
We must all learn, as parents (i.e.: expert about my kid), not to listen to the “well wishers” (i.e.: assholes who know more than we do). It is unfortunate, but let’s face it, who has a clue? I would never think to give Claire advice about Sophie, I may tell her how I do something, but that is all.
I am often told how beautiful my daughter’s hair is. And it is. Actually, she has gorgeous hair “to die for” I hear often. And when it is short it curls up and is fantastic LOOKING. Impractical as all hell, but looks great. Mahhhvelous, actually.
Well wishers keep telling me to cut her hair short, it would look great. And the first dozen times I politely try to explain that she will tangle her hands in it if I don’t pull it back in a pony tail. When she can, she pulls on it, tangles her fingers in it, puts broken hairs in her mouth, all in all it is not good. Yet, they forget that and say “why don’t you cut it so it curls?”
There are so many times where you need to say one thing and mean another. This is clearly pointed out on this great new blog by a “devoted parent to a severely disabled child and [is] either the very best or the very worst person for this job.” Check it out, very, ummm, in your face. I like it!
So, where was I? Oh yes, “cut her hair.” Ok, will you continually untangle her fingers and pull hair from her mouth?
Sure I’ll cut it so you can think it looks good. No problem that it will be a nightmare for her and me, you will get some pleasure out of it.
Then there’s the yearly “what is she going to be for Halloween?”
She’s going to be a severely disabled kid dressed like an idiot in a costom she does not understand being pushed around at night with nuts all around being dragged from house to house so that she can be given pity and candy, neither of which are desired nor useful. What are you dressing up as?
Now, for some great on topic levity, check out this site (it opens with audio on, it is very family friendly though) which I found via this cool blog.