Wednesday, February 27, 2013

Thinking about everyday heroes and special needs children

I stumbled across this piece by Liane Kupferburg Carter on 10 Things I Wish Someone Told Me About Parenting a Child With Special Needs a couple days ago, and I've been meaning to link to it.  She personalizes it about autism, but as the parent of a special needs child with a different disease I read each of her "10 Things" with great interest and found much to think about (and agree with).

So here is a snippet for Dana, and for John, and for all the other parents in whatever station of life, with whatever social/political views, who are struggling to do their best for their "special" son or daughter:
3. People will stare. This will eat at you in the beginning. It's natural to feel uncomfortable, resentful, even mortified. It is also a natural instinct for people to look at anything that's a little out of the ordinary. Your child's quirky behaviors in public may draw attention, and what if they do? Stop worrying about it so much. Who cares what strangers think? And I can promise you this: You will learn to never, ever judge any other parent whose kid acts up in public. Eventually, you will figure out how to handle people's inappropriate questions. I'll never forget how taken aback I was at a wedding 15 years ago when my husband's uncle abruptly asked, "Is there any hope for your son?" Sometimes, people may imply that you just aren't trying hard enough. Or they will offer unsolicited advice or press the latest miracle cure on you. Worst of all, they will talk about your child right in front of him. Don't let them. And don't you do it either. Your child may not be verbal (yet), but his ears are working just fine.
And because most people who don't have children like this will not click through the link, here's one more:
8. There will be people who tell you that autism is a gift. Or that God singled you out to be a special needs parent for a reason. Don't believe them. You weren't singled out or chosen. What you are doing is rising to meet challenges, and simply doing what every good parent does: giving your child everything he needs to thrive. My son has many abilities and strengths; he can be warm and funny and empathetic; he has an amazing memory; he's a whiz with video games. But I'm not going to lie: Those early years with him were hard and scary. So is reaching the age of 20. His disability isn't a gift. What is a gift is the joy he and his older brother bring to our lives. 

6 comments:

Dana Garrett said...

This is wonderful, Steve. Thanks for posting it. I can relate especially to the unsolicited advice people offer to make my child "normal." It always takes the temper of something that my wife and I are not doing as parents. If only my wife and I talked to him as a typical 8 year old child instead of accommodating our speech with him in a way that increases his ability to understand, then in a few short years his delays and autism will wither away,as we were recently advised. Not a chance that his problems are organic and no behavioral strategy will "cure" him. But I am learning that people say these things partly because the attribution of fault is a cause that can be redressed and, thus, provides hope. A structural biological problem offers little hope. People don't like to live with facts that make total reversals of fortune hopeless. That want things to get better for you and your child. I see that more and more in the moment the advice is given. And it's starting to be okay.

Duffy said...

Frankly 4 and 5 were the ones I wish I knew much earlier.

Dana,

I had no idea you were the Dad of an autistic child. IIRC you are good friends with Corey Bowen who is, IMNHO, one of the finest Autism professionals in the state. My son is 12 and very low functioning so I've plumbed the depths of resources locally and your point about facing facts is a salient one. Odd thing: My son used to get many more stares before he started wearing his safety harness (hooks into seatbelt). Without it he's something of a curiosity. With he becomes nearly invisible.

Dana Garrett said...

And I didn't know you were the father of a special needs child. I am a long time friend of Corey Bowen. We graduated from the same college together. He has been a tremendous help to my wife and I. And I agree that he is quite good. I appreciate his no nonsense, realistic approach, and his intuitions about what is going on with my son have been spot on. Once he came up with a solution to an undesirable behavior my son was doing at school, one none of the other experts thought of. I guess from what you said about your son that he is like mine: pervasive developmental delay is the principal issue. Is that correct?

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Duffy said...

@Dana:

PDD-NOS was the original diagnosis and he has OCD, epilepsy and for a time, pica.

It has been challenging to put it mildly.

Delaware Watch said...

Wow, Duffy,that is a tough cluster of diagnoses. It must be very challenging. I know that my son's issues have nearly changed everything about our lives. Taking my wife out on a date is nearly almost always out of the question. I used to bury myself in books and read many in a short period of time. Not any more. My political activity is now non existent. I can't work full time any more because of school schedules and the absence of daycare in the summer. That has significant financial consequences. Etc, etc. Well, I don't have to tell you. You know. It's rough.