Wednesday, September 28, 2011

Wednesday Workout - Self Advocacy

This is something we've been working on for quite some time and will continue to work on for years to come. For us, it's happened in stages, each stage equally exciting and ones you never forget - so exciting that it's baby book (or blog) material:
  1. Does not tear off CI when put on - actually wears it most of day showing he LOVES to hear.
  2. When coil falls off, puts coil back on without assistance - showing he LOVES to hear.
  3. When whole CI falls off onto floor, actually PICKS it up and brings it to you to put back on - showing he LOVES to hear.
  4. ASKS for CI first thing in the morning or right after bath - showing he LOVES to hear.
  5. When processor portion falls off ear (coil still connected), comes and says, "My CI! Help please." - showing he hates the feeling of it just dangling ; )
  6. Tells you (with words) that the CI has turned off and is not working (although still on ear and coil attached to head) - showing he LOVES to hear.
and not that it ends there. Not even close. In fact, that's just the beginning of true self advocacy - truly letting people know, "Hey, I didn't hear you" and it has to start now. I don't want Aiden to be shy about speaking up for himself. I don't want him to feel apologetic for missing a piece of information because he didn't hear them. If he's having technicalities with his CIs, I want him to speak up and seek out the help he may need to get that technicality fixed. If he's having trouble hearing due to where he's sitting in class, or standing in a room, or whatever the reason may be, I want him to feel comfortable, not embarrassed, to SPEAK up for himself.

Unfortunately, Aiden has come home a few times already this school year with one of his implants OFF. Yes, OFF. We have Aiden's lights turned on for this reason - if they're blinking fast - he's good to go, slow - something's wrong, off - the CIs off. This is all documented in his notebook, with each error code, what the error means, and how to troubleshoot it. I've also met with his teacher before school started and gave a quick demo on them. It's hard to say if it turned off on the bus, was never turned on appropriately after nap (oh the thought!), fell off, and while the teacher or aide was putting it back on it turned off (not totally uncommon when putting it on - that's why it's important to do a quick ling check or check the lights), etc. I've talked with his teacher each time about it, but if it happens again, I will call the principal and ask to come in and explain Aiden's CIs to everyone who he is with throughout the day.

in the meantime ...

I'm teaching Aiden, that HE needs to tell the teacher or the aide or whomever he may be around - "HEY, my CI isn't working."

note: stop the music to the right. sorry it's so small too!

so proud!


Julia said...

I love all the "loves to hear" signs. Ben has only recently learned how to put his headpiece back on by himself, and I get such a thrill when he does it. It's like Mikey in the Life cereal commercial: He likes it! He really likes it!

I made up a handout with detailed instructions and diagrams about the care and feeding of Ben's equipment, and I have a special meeting with his teachers where I go over the handout. They keep a copy in the classroom. So far they've been really good about it, although sometimes the battery door on his hearing aid isn't *clicked* closed.

leah said...

I can't view the video (it says it is private) but it is good that he is learning to speak up about his CI being off.

Nolan's come home with a dead battery or two this year, and he won't tell his teacher (he'll tell me, but not his teacher). Still working on that one - he doesn't have any lights or any other outward indicator to determine if the FM system or the hearing aids are working. Sigh... I'd kill for a light on the BTE portion to indicate whether the hearing aids were in FM mode or regular mode.

Danielle said...

i love it omg so precious amazing. so glad he doing well.

tammy said...

Julia - it is so nice when they start putting their own coil on! I love the handout with diagrams idea. I'm going to do this too.

Leah - thanks for the heads up. I checked it after I posted and it was fine, so don't know how that happened. I made it public again. and yes, we love Aiden's lights! The audi can turn them on or off, so once he's more vocal about whether or not his CIs are working, we'll leave them on. A great troubleshooting feature!