You're Not Like My Child... My Child is Severely Disabled.

[chaoticidealism]

I get this sometimes. People look at me; they see I can talk, I can take care of myself, I live on my own with no more than a case manager checking in weekly (thank goodness, by the way; it was long overdue and I'm very pleased to finally be able to depend on someone to help me figure out the little unexpected bits of daily life

Comments

[tannenbaum]

"Your child may learn to deal with disabilities" is quite close to "your child may become less disabled". What if not?

"Whatever does happen, your child can have a future--a good future, one where he's happy, and safe, and loved, and gets to do things he likes to do" - what if not? Some are unhappy, some have to much pain, some have resistant depression and more or less bad future.

To give hope is just to remind that a bad future is not the only possibility, that good things happens - this way ("learn to talk") or another ("learn to communicate by alternative methods" or for example "be happy almost without communication"). The more kinds of hope to the tired parents the better.

But you are right, hope is never a guarantee, just a probability.

[chaoticidealism]

Any child may grow up to be unhappy. But that is true of non-disabled children, too.

Disability does not seem to statistically increase the chances that a person will describe their own life as "unhappy".

I have recurrent depression, in addition to (tentatively diagnosed) long-term dysthymia, and I still consider my life worth living despite it. Depression is difficult to deal with, certainly. And yet--my life is still worth living, even though parts of it can be very unpleasant.

I can't guarantee a fulfilling life for a disabled child, but that's not got anything to do with the disability. It's got to do with the uncertainty of the future in general. I couldn't guarantee a fulfilling life for the healthiest, most able-bodied, most neurologically average child in the world, either. The future is unknown and scary and that's probably one of the most overwhelming parts of being a parent. It's just that when your child is disabled, the whole world is reinforcing your worries, instead of telling you it's going to be all right.

[tannenbaum]

I actually agree with you, just think that both parts ("learn to talk" and "learn to deal with non-talking") are worth considering. For neurotypical problems and persons as well.

[chaoticidealism]

If I can encourage parents who are getting hit by prejudice from every side, trying to fight for their children, then I feel like this blog is doing its job.

Your kids sound like awesome kids. Tornado, volcano, Xbox, and Godzilla? Sounds like a nerd after my own heart!

Keep being their mom, and they will be just fine. :)