Parents of autistic kids bond over cures, nut future life

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When my daughter was little, it seemed that the places where parents gathered for information and socialization were the latest cure research discussions. Some of the treatments were nuts. It was rare to find real science behind what parents were trying, just anecdotes. Usually the treatment weren't cheap. Parents would drive over 100 miles to get treatment from the latest trendy discovery. A heard comments like, I can't see much difference except his hair looks thicker."

There wasn't much discussion about what to do if our kids stayed disabled when they grew up. What would be do to promise them a happy future? had a call from a mom who said all her cure friends are not around anymore now that her son is grown. She doesn't go out much because care givers are hard to put into her budget.

The parents are the ones that we should feel sorry for.

It's true that when you have a classically autistic child, you stop having much in common with your old friends. It's hard to accept that your life is not what you had planned at all but you have to get past it. Parents need to do more than just focus on cures but they usually don't.

The hardest thing for me as a parent now is facing what kind of life my daughter is going to have without me.

I wish that those cure groups would address this when they have conferences. They should use half of the conferences on the reality of what the future holds for autistic children when they grow upl They should tell parent to plan while they're young to insure good lives for them when they grow up, if they don'y get cured.

Have you ever read the blog "Ballastexistenz"? It's written by an autistic woman named Amanda who lives independently in her own apartment, and she details many of the supports and strategies that are helpful to her. She also does great disability rights blogging. I think you might find it very helpful.


Link:
Ballastexistenz

Thank you for the help. I'll read her as soon as I wake up tomorrow while having my morning coffee.

I feel sorry for the parents, they want to give the best life for their kids that they can. It is really sad that there are treatments out there that just drain the parents time and monies rather then help the child.

In the book, "A Mind Apart," Peter Szatmari talked about a couple who tried every "flavor of the month" treatment for their son's autism and wondered why, at ten, he was not significantly changed. They tried everything except the things that required real work and a real investment of time with their child. They wanted the "quick fix." This is sad and a waste of time and money.

I need to get that book! I think that some parents avoid thinking about who their autistic child is because they're spending all their time and money as a way to imagine the child that they'd rather have.

This is a rejection that the chidlren must feel. I think that a lot of parents don't realize how much many autistic children hate themselves. They see how the stress they cause. I hadn't realized how much my daughter didn't like herself until I told my husband in front of her how much I admired her courage because it's a lot of work for her to just get through the day without freaking out. When I said some nice things about her in her earshot, she tried harder to succeed. It was an eye opener. My husband and I tell each other and her doctors and anyone else around her that she is to be admired.

It makes a world of difference. I think she likes herself now and tries harder to cope and be socialable. We all have more fun together now.