Sunday, December 05, 2010


I sit in a room full of parents, their children with various issues, various diagnoses, varying degrees of functionality and challenge, in a place where improving functionality and overcoming challenge is the goal. The clamor of chatter bounces about the room, parents trying hard to connect with other parents, sharing what works, what doesn't, what they see and how they feel. Certain refrains reach my ears.

"Once I took the gluten out, everything was better. He even looks at me now!"
"Oh, no, my child isn't autistic. He has PDD-NOS. It's a developmental delay."
"All those chemicals in vaccines! She's recovering from measles now, it wasn't so bad. How long? Oh, it's been about... eight weeks now. The school is starting to get fussy, but I don't want her to over-exert herself in PE..."
"The vitamins have been really helping! You should try it."
"Well, he focuses well enough when it's something that he likes. He'll watch that train in the grocery store for hours if I let him. He just doesn't like his schoolwork. What kid does?"
"The tae-quan-do has been amazing. He is so respectful now!"
"They want to teach her to sign, but if she signs, she won't speak, and who understands sign language in the real world?"
"I had to pull her out of school. It just wasn't working. Nobody wanted to really help, they just wanted to stick her in with a bunch of stupid special ed kids and let her rot."
"They want me to put him on meds, but I want him to learn to cope without them!"

I know these children. I have seen them once a week, some of them for six years, and started off seeing them two or three times in a week. I have seen them grow, and change, and suffer, and triumph. I have seen the hard work they do. The hard work their parents and grandparents and caregivers do. The hard work their siblings do.

They do what works for their families. And whether you agree or not (or I agree or not) with the comments I was hearing, or support their approaches or not, or wonder more about these children and wonder why these comments might have stood out in my head from the other jabber in the room... these are hard-working people, doing the best they can in a hard place.

I remember when I first found myself in this world of special needs and disabled children. I was shocked to find how I started off in a place of such utter ignorance. I'm an educated person. I had no idea. To find I had to come to terms with the needs of my child and the changes in my own life, that wasn't easy, and it wasn't quick. To actually come to terms, that wasn't easy or quick, either. We did try things, we spent hours researching things we had heard, theories handed to us. We went through the agonies of self-doubt, self-recrimination, the ugly side of discovering life isn't going to be as you expected it, as everyone assured you it would no doubt be- provided you did everything right, having it go this way, the wrong way, was a slim and distant possibility. The attitudes towards special needs kids and their families- the ignorance and venom of people who have no idea what it is all about, what it is like, can be overwhelming. Add in the venom of people who insist you should believe what they believe and do what they do within the special needs world itself, and it can be crushing.

Often I find people in these waiting rooms who are just reaching those terms. They go on about things they've tried. When I disagree with their approach, I often smile and nod and say, "how interesting, I'm glad that is working for you guys..." and then go on to note the latest triumphs the child has achieved, leaving why I think that challenge was overcome deliberately vague. I'm not there to add to the crushing weight of constant judgment.

I might note what worked for us. And some of those other parents smile and nod and say, "how interesting. I'm glad that is working for you guys..."

And that's OK. We'll all muddle through. It's good to listen. Sometimes there are new ideas to try, bouncing about a room of jabber.


Stimey said...

This is such an interesting post. I love what you say about whether you agree with the people and their approach or not, they are doing their best and trying their hardest.

I recently met a woman who has a very, very different approach to autism than me. She suggested that I list her group's meetings on my autism events site and I had to email her back and tell her that I don't list that particular group. Her rational response to my telling her that was fantastic. We're buddies now and have even gone out for coffee together. She's wonderful. And we're both trying our hardest.

It's nice to have people around (like you and her) who don't snipe at each other, but try to lift each other (and our kids) up, even if the way we think about it is different.

Kim Wombles said...

Wonderful post! Thank you. :-)

farmwifetwo said...

Starting the process - cringe!!! - I got lucky that I'd heard 3rd hand from someone else in a fluke conversation that gave me a starting point to get my FSW.... The very fact the Dev Ped let's you walk out of his office with little more than a "good luck" and no help... Granted 9 yrs and 2 kids in the "system" later it's not nearly so overwhelming. When I wrote my epic against funding of bill ABA by the Fed's (Bill C-360) I had in it funding and services. My child psych, ped and FSW all requested permission to write out those sections and give them to their patients... You have to say yes, even though a part of you is petty enough (hey, I'm human) that it's not fair that those people wouldn't have to hunt and beg like I did.

I tried a support group once. But it wasn't any different than the online "camps" so I decided I wasn't interested.

Niksmom said...

What a wonderful post. I love what you write about how we are all trying our best and the importance of trying not to judge one another. You are right, the weight of that can, indeed, be crushing when added to the already heavy burden we place on ourselves.

Unknown said...

I like what you said about not being judging each other. We are a sensitive community, and we are hard enough on ourselves. Even though we are united by the similarities of a DSM diagnosis, our kids are also so different from each other, and we are each fighting our own private battles. Sometimes we hear judgement where none is intended, so I like how you respond when people try to offer advice. I'm going to steal that one, okay?