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Wednesday, May 4, 2011

My weakest special needs parenting skill

For some reason today, I got feeling depressed over what I am very bad at doing---advocating. Most especially, lobbying for services for Janey that she needs. No-one has denied me any services---I just got wondering about summer programs and thinking I should check on the progress of Janey being placed in a program. I have no reason to think everything isn't going smoothly, and I know she's eligible for a program and hopefully will be placed in one. But just THINKING about it brought up memories---of when Janey didn't get a full day K1 placement, of when it took almost a year to get her evaluated for ABA, when I didn't speak up enough when she had an ABA therapist that rarely showed up---all kinds of things. None of these were the fault of her exceptionally good school, but rather the fault of bureaucracy---that nameless, faceless system where the squeaky wheel gets the oil, and I am not squeaky. I am horrible at being squeaky, unless I'm faced with a true crisis. I do okay in that situation---I do pretty well. But when it comes to just nagging or requesting or checking, I'm no good. Part of it is I think a Maine upbringing. You don't put yourself out there like that. You don't demand things. You assume people know what you need, and how badly you need it. You are taught young that demanding things, pushing for things, only makes people less likely to do them for you. I'm sure not everyone who grew up in Maine feels that way, but I think a lot more people than other places. I also just feel sometimes like if someone says they are going to do something, keeping on asking them if it's getting done is like calling them a liar---like saying they aren't really doing what they said they would do. And I'm basically confrontation aversive. I hate to push for things. I hate to demand things. And I worry all the time that hurts my kids, not just Janey.

What makes me mad, when I think about it, is that it shouldn't be that way. There isn't any application for getting a child with special needs. No-one asks you first "Are you a go-getter? Are you good at asking for what you need, or your child needs?" If they had asked, I would have said NO---I'm not good at those things. I have some qualities which are good for the job---I don't have much of a temper, I'm fairly patient, I have a bit of a sense of humor for when things get crazy, but I'm not an advocate. And the reason any parent NEEDS to be an advocate is that the resources are limited. There are never enough good slots for the programs that are out there. The very fact that there ARE good programs and not good programs is WRONG. Every child, not just my child, not just special needs children, not just gifted children, but EVERY child should be given everything our society can give them. And don't tell me the money isn't there. The money is there for war, for corporate welfare, for countless entitlement programs, and so there is money for kids. It's crazy not to invest in them. But if you have a "regular" kid, you can dig out a good summer or a good school for them by not having to demand, but just searching, and researching, and finding and maybe paying. I can't do that for Janey.

I think into the future---to wanting maybe someday to find a living arrangement for her, to the closer future---finding a safe and caring middle school or high school. I worry a lot. I beat myself up a lot, and feel depressed a lot about my failings. I wish that it was enough just to love Janey, to accept her and to enjoy her. I can do that part. But it's not enough.

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