So, the universe has decided that you have the parental skills (or least
the potential) for raising a disabled child and has handed one to you. After
the first reaction of "Wait, what?!? Who, me?!?", what do you actually do? Some
advice if you don't mind.
First, take a really deep breath. Get used to feeling of
having the rug pulled out from under you. It's gonna happen a lot- in both bad
and good ways. You will learn to ride it out. You will find a new normal. Try
yoga or meditation, if you need to. (Although any exercise will help.)
Next, go ahead- mourn the death of your expectations. We
all have them for our kids. Disabled or not. The child you thought you had
either did not exist or no longer does. Acknowledge it, and then let it go.
What you have instead, is something different and much more precious. If you
allow yourself time to grieve for a little while, you will be able to see the
beautiful unique child you actually have. I have two daughters, the youngest
one is disabled. I am actually much more relaxed with the disabled child and I
suspect that makes me a better parent to her. Seriously, Hippie Pants is a
genius but artsy and flighty. I wish I had allowed her to be herself instead of
ALWAYS stressing about her grades which were never a true reflection of who she
is. (Sorry Hippie Pants, but you were my learning curve. Think of it as the
good karma you earned for your little sister, if it helps.)
Now, go get some different expectations, not the ones you
thought you needed like crawling at x number of months, piano lessons at x
years. GET BIGGER, BADDER, BETTER ONES. SERIOUSLY. Think happy, healthy, moral
adult. You are not raising a disabled child. You are raising an independent
bad ass adult. Disabled child is simply the raw material you were handed to do
this with. Make bad ass grownup your mantra. You're gonna need it when dealing
the well meaning morons who you will be trying not to smack all the time.
Next, understand that people come in three catergories
when dealing with the disabled. This is most obvious when dealing with the
medical profession or education. They are the following:
1) "OMG that child is disabled. Freak out now. This is not a drill" -
These are well meaning idiots. They are the doctors who want to immediately
jump to the most dire procedure. The social worker who wants to help you find a
boarding school when your kid is a few months old. The other kid's parent who
doesn't allow their child to ask questions. Sometimes its the drama queen parent
of another feisty child who wants you to participate in their anxiety. Learn to have
patience, but call them on it. They need an education in not being timid.
Most, of all don't let them freak you out. Their fear can be contagious.
2) "What do you expect?!? She is disabled after all." - There is a special
place in hell for these complacent bastards. These are doctors who say stupid
things like "I'm sure you are okay with anything that stunts her growth" (No,
Dr Mengele, I am not okay with ANYTHING that could limit my child's potential.)
Or, the supposed learned educator who decides because she cannot reach your
child, there is nothing to reach for. (Threatened to go to court over that
one.) Always nail these jerks straight to the nearest wall. Better yet, take
their proverbial heads home and mount them on pikes in your front yard as a
warning to next jerk who is willing to do a half assed job with, for, or around
your kid.Worst of all, sometimes its YOU. ("I'm sure you tried your best,
honey" you say when you kinda know they didn't but are too tired to argue.) NEVER drop your guard on this
one. Complacency is not your friend. Disabled people have to over come
barriers we don't even normally see. They are gonna need strength for that
fight not crippling sympathy. You do NO child, special needs or typical, any
favors by not teaching them to shoot for the stars. So what if they fail?
They'll learn to pick themselves up, dust themselves off, and try again. It's
called being a person.
3) "Umm, hi, I don't know what to do here..." - This is everybody else not
in the two above catergories. They are actually kind of ok. Really. I am more
surprised by the number of people who turn out be decent human beings when given
the chance, then the number who don't. We are, at our most basic level, simply
banding primates. And that's actually a pretty cool thing. People who simply
roll up their sleeves and try to help out. And be cool and inclusive. The ones
who get we are all trying to muddle through together. They may say silly things
or step on your toes occasionally, but for the most part they are helpful and
kind. Be patient and kind back. You owe your kid a chance to get to know and
be part of this crazy world. And these are the ones who will let them in.
Oh, and a few last words on this. We are all freaks in
some way. Not one of us is perfect. Your child's not perfect is no better or
worse in the long run than anyone else's not perfect. Learn to dance to your
own damn rhythm and let them dance to theirs. Also, get one healthy vice;
(notice I said HEALTHY) coffee, crossword puzzles, knitting, yoga, blogging,
competitive ironing, underwater basket weaving, whatever. Something that is
all yours. Something you can do anywhere you are. It will let you not get
swallowed up when things get crazy. Good luck and remember to have fun with the weirdness.
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