Thursday, June 07, 2007

One of Our Fears

We live in fear of this all the time.

As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."

Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function?

And until he can, why call him "high functioning"?


Suzanne said...

it's not funny to have needed services denied, but I had to chuckle at the graphic. It reminds me of the Seinfeld Soup Nazi. No soup for you!

mcewen said...

One of my best pals has an extremely high functioning [what on earth does that mean?] child. We've known each other since the kiddy winkies were bairns. She has helped me more than I could ever express. She has helped her own son as nobody else could - which is just as well, because as far as the school district is concerned he is too 'high functioning.' I know [some] of the difficulties they have faced, and appreciate [some] of the frustration.
I'll keep my fingers crossed for you.

Club 166 said...

Once you are verbal, you are assumed to be "high functioning". And any non-compliance is assumed to be willful.

And, of course, as long as you can complete the lessons, it doesn't matter what your level of social functioning is, we don't have classes in that so it doesn't count!

We'll be thinking of you. Good luck!


Joeymom said...

I actually sell this design through cafepress- its my #2 seller. My #1 is "Yes! You Can Ask Me About Autism" which I started because people would see my puzzle ribbon and stop me all over town to talk about their disabled child and special ed. I wanted to move away from the puzzle ribbon, but I still needed something quickly identify-able. Its working very well. :)

bigwhitehat said...

It all has to do with judgment calls. Compared to some (my boy included) your son is way ahead of the pack. So they look at all of the children they are educating and make judgment calls. That answer may suck but it is their reason.

I know you need to rant a little. But ranting time will be over soon. Then you have to get down to practicality.

What does your boy need and how is he going to get it? If the school or some other organization is not going to provide services, how is Joey going to get them?

Consider the answers to those questions and figure out what you need to do next. Be resourceful. You may have some great ideas just waiting to be used.

I'm thinking about forming a charitable foundation for my boy. I hope it helps some. Hell, I hope it outgrows his needs and that I can start helping other kids.

The important thing is that we share our ideas so we can all use them.

Big Texas sized love for you and the family. Keep up the fight.

Joeymom said...

I usually need to rant a lot. I doubt I'll be nominated for sainthood- or even Mom of the Year- anytime soon. ;)

I should note that we're not ones to play Russian Roulette with Joey's future. We have private OT and speech services for him, and a small ABA program to address some safety and other issues that can be trained effectively through DTT, and I work as I can to pay for them. I've opened up a little Cafepress shop, and am considering some other work-at-home options to add to my current array of scoring, adjuncting, and reseaching.

kristina said...

I saw the HFA/LFA terms at the conference I was at yesterday and kept hearing them----we need some other ways to describe this.

Sam I Am said...

I just ditto Club166 and Kristina. I will say some prayers. :)