Saturday, 26 October 2013

My house, their rules

I think I have figured out why I am hating the home-based therapy model required by the government agency that provides funding for the Monkey's therapies. It has been bothering me for a while, and while Monkey has made amazing progress and enjoys most of the sessions, I have been feeling more and more resentful as the weeks wear on. I feel guilty about it, of course. What is my problem? After all, this isn't about me, this is about him.
Well, it isn't, but it is.
The point of requiring therapies for pre-K and Kindergarten special needs students is, according to the funding agency, to help parents to develop coping strategies and methods of accommodating and working with their special needs child in the home. It is about educating the parents to deal with behaviours and challenges. All goals are supposed to be more "family focused" than "child focused".
I get this. The whole educational system is designed for the child. The therapies in the home are supposed to support the family centred model as a way of making sure the child and his siblings are in the best possible environment to learn and interact.
So it is about me. And I hate it.
I hate having to be fully alert and ready to deal with people first thing in the morning. Petty, maybe, but I have never been a morning person, and I resent having to be nice to people I don't care for before I am fully awake. I know his kindergarten is in the afternoon, so they have to do the therapies in the morning, I just wish I didn't have to have them in my house.
I have having to make sure the whole house is clean and tidy and organized every day, to the standards of the therapists and their bosses. I hate that when I miss a last vacuum of the kids' rooms in the evening, or if my little crumb factories have toast for breakfast, and I don't manage to sweep it all up by the time his people get here, I get snide little remarks, or those oh so helpful "just so you know, his carpet has food all over it" or "there is a sticky spot on the floor over here" type of comments.
I hate most of all that I have to welcome a parade of strangers into my home, as if I wanted to have every aspect of my decorating and housekeeping and parenting on display for people I don't particularly like, but have to tolerate. I have to be polite and even kind to them, even though I don't want them here.
It isn't even that I dislike them in particular. Most are nice enough, and mean well. But I don't get a choice. They are rarely people I would choose as friends, and certainly not as people I would invite over every damned day when I am at my least social.
I feel guilty and a bit ungrateful for these thoughts and resentments. I'm happy my little monkey can get the help he needs without it being a major financial burden in these early years. I just wish it didn't have to be at the cost of making my home the therapists' workspace.

Wednesday, 2 October 2013

Sometimes I forget

Sometimes I forget.
Day in, day out, I get used to the way things are.
I forget that "most kids" at his age don't line their toys up in patterns all over their room, and cry real tears of anguish when they are accidentally disturbed.
I forget that "most kids" don't howl, flap, jump and run circuits of the house when they are excited about the show they are watching.
I forget that "most kids" at his age can hold a pencil, use a spoon, pull a lever, push a button, squish play dough in their hand.
I forget that "most kids" at his age can kick a ball, run without stumbling, carry something without crushing or dropping it.
I forget that "most kids" at his age can sit and eat in a restaurant without climbing under the table of the booth beside them, can wait for their food without keening in distress and punching the seat.
I forget that "most kids" at his age don't deliberately poop their pants, then play with their toys in it.
I forget that "most kids" his age can talk easily, in full sentences, to almost anyone.

Then we go to the playground, or the mall, or a restaurant, and I see the other kids. Kids smaller and younger, who do all the things kids their age usually do. Kids who seem to be listening to their parents, enjoying a snack, playing appropriately.
Then I remember. He isn't quite like them. He can't do what they do. He doesn't act like they act.
He isn't "most kids".
It is always a little shock, that "normal" exists most places. But not in our house.
In our house, normal is therapists, accommodations, precautions, damage control. It's always being careful, vigilant, aware. Never careless or resting without consequences.
Sometimes I remember.
Some days that is okay with me.
Some days it hurts to see him not fit in.
Some days I am just too tired or busy to think about it.
Most days I just wish I could forget "normal" is out there, and is not always a welcoming place for me and mine. I know I am not supposed to want him to be different, to be anything other than who he is, where he is right now.
Most days, I just want to be normal. Whatever that means.
And on good days, I forget.