For Parents of Kids with Disabilities/Impairments

February 21, 2008 at 4:30 PM (Uncategorized) (, , )

I’ve often thought that parents’ of kids with disabilities might not have seen or heard enough:

From disabled adults:

My opinion of what my parents did right (Both of mine are out of the picture at the moment)

They did not ‘hide’ much from me about their lives once I hit ten or so. The unintended good side effect was that I learned early that nothing is safe, or certain, unless you figure out a way to do it yourself.

*Not* necessarily the way the able do it. Your way.

They enjoyed learning and made sure I did too.

However they did it, they made sure when I was *very* young that relatives on both sides showed me love, instead of pity. (I overheard stuff, some did pity me, but they *never showed it to my face* Good Good Good.)

I was pushed physically and mentally. And, yes, parents you should. You are the first outsiders to discern what you believe your childs limits are. A balance between slack off time and homework/phyiscial activity is a good thing.

I was sometimes ‘spoiled’ with the great things in life: vacations, toys. and the freebies of family get togethers, games etc. Figure out what your budget and your stress level can afford and splurge when you can.

I was a person, and therefore no ugly physical abuse.

They didn’t institutionalize me, lock me in the house or leave me at a community center one day and not come back.

My opinion on what they may have done ‘wrong’

I think like many parents, they stayed focussed for too long on what they *wanted me to be able to do* rather than what I could *actually* do. This was cause for strife.

Please, parents….give up on impossible dreams as *early* as you can, and help create new very possible ones for you and your kids. Try, yes try new things. But if they don’t work…kid blaming is often stupid, and *parent blaming* is also pretty dumb.
And I recognize that what I can do or could do back then is somewhere between my parents expectations and my own beliefs about my limits.

They (and I) assumed that CP was it and that I’d be able to manage my adulthood on my own. (BZZT! Alex Trebek and Jeopardy say “Wrong answer and thanks so much for playing!”)

Look, okay something ugly and bad to say here, but it has to be said.

I know no parent of a kid with disabilities should have to be a ‘lifetime caregiver.’ It sucks. But don’t assume that the highest level of independence they attain can be realistically sustained over a lifetime, or that a disability they’re born with is the only one they (and you) will have to deal with over the course of their lives. Plan for when you’re not there and/or they fcuk up.

Parents: If you’ve got ‘issues’ before the disabled kid is born (Marital strife, mental illness, addiction, profligate with money) make some effort to get yourself *help and support* for those things that would be there whether the kid learned sign, used a guide dog, used a wheelchair,was not neurotypical or was completely able. In addition obviously ask around for support directly involving other parents of kids with disabilities. My father refused to deal with his alchohol addiction and therefore emotionally abused me, and my mom continually yelling, insulting, (by continually I mean four nights out of seven from 1971 through the divorce in 1979) sending the either covert or open message that the ‘tragedy’ of having a disabled daughter when he deserved able bodied sons was one of the reasons he drank.

Don’t automatically rule out driving, romances, marriage, children.

It depends. That’s all I can say about that.

Find a middle ground between the sappy and impossible “You can do anything you want to if you set your mind to it!”

No. They. Cannot.

And the equally damming coddling, never pushing, never demanding independent movement, thought decision making, living arrangements…a guy I knew who could have been great was completely wrecked by that.

Some can do great things for a very long time.

None can do everything forever.

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1 Comment

  1. Attila the Mom said,

    Lovely post. And totally spot on!

    xo

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