Today was a day of mixed feelings. We had a panel of deaf adults. The thing I came away with was "missing". The adults talked about the services they had in school and they talked about advocating for themselves. They seemed okay with the fact that they often missed information or needed special help...WHY?? Why is it ok that you aren't getting everything? Why is unequal access acceptable? I'm just NOT ok with that. Maybe I'm being naive, maybe it's because I've only been on this path for 6 years (they have been living it for 30), or maybe it is a fundamental philosophy difference. I don't know, but I need to figure out how I feel about it, and what it means for Miss Kat. (In defense of JTC, they provided realtime captioning for the panel, so they didn't miss anything here, but they were discussing school 15+ years ago and their social interactions.)
*I also want to mention that all of the deaf adults knew ASL to varying degrees, but none of them used it as their primary communication mode*
The second speaker of the day was an ENT. He talked about the steps for discovering the cause of a hearing loss. He talked about many syndromes that can be connected to a sensorineural hearing loss. I realized that Miss Kat was NEVER tested for anything. The ENT and audiologist heard her medical history and just assumed that the loss was caused by the drugs, or lack of oxygen. They never did any blood tests or other studies to see if there is a genetic cause. She didn't even get a CT or MRI until it was time to get her CI. What if she had LVAS? Or a conductive loss? Why didn't anyone bother to check?? I'm outraged! There are fatal complications that can be first signaled by a hearing loss. Why didn't the doctors care enough to check these things out for my little girl?
We had another meeting with Miss Kat's SLT. I brought up my concerns about her hearing aid and her stress level. I really fear that the hearing aid will overpower the clarity of her CI. I also called our regular audiologist and asked him the same question. He told me that the CI signal is so much better and stronger, that it will always be dominate (theoretically), but to always keep an eye out for a change in her performance.
As for the behavior/stress issues, she is doing much better, but one interesting little story. Miss Kat told me to stop talking, so I did. I turned my voice off and starting signing ASL. She got even madder and told me she could still hear me!?! What is that about?? Is there a voice in her head now? Is she translating ASL in her head? What is going on? She also told me that she could hear me when her device was off and she was lipreading me. (But when her device is off and I sign, she says she can't hear me...) The whole thing is weird.
So, back to the SLT. She is still assessing Miss Kat's speech and spoken language. She is using the PLS IV (http://www.tpccpg.com/support/index.php?View=entry&EntryID=2473) and a single word expressive vocab test. She also did a speech test to see what sounds Miss Kat is using, and what she still needs to work on. They are going to take these results and help we figure out the path for Miss Kat's IEP. Once we have appropriate goals in each area, she will be able to get the placement and services she needs. I hope it works!
The second speaker of the day was an ENT. He talked about the steps for discovering the cause of a hearing loss. He talked about many syndromes that can be connected to a sensorineural hearing loss. I realized that Miss Kat was NEVER tested for anything. The ENT and audiologist heard her medical history and just assumed that the loss was caused by the drugs, or lack of oxygen. They never did any blood tests or other studies to see if there is a genetic cause. She didn't even get a CT or MRI until it was time to get her CI. What if she had LVAS? Or a conductive loss? Why didn't anyone bother to check?? I'm outraged! There are fatal complications that can be first signaled by a hearing loss. Why didn't the doctors care enough to check these things out for my little girl?
We had another meeting with Miss Kat's SLT. I brought up my concerns about her hearing aid and her stress level. I really fear that the hearing aid will overpower the clarity of her CI. I also called our regular audiologist and asked him the same question. He told me that the CI signal is so much better and stronger, that it will always be dominate (theoretically), but to always keep an eye out for a change in her performance.
As for the behavior/stress issues, she is doing much better, but one interesting little story. Miss Kat told me to stop talking, so I did. I turned my voice off and starting signing ASL. She got even madder and told me she could still hear me!?! What is that about?? Is there a voice in her head now? Is she translating ASL in her head? What is going on? She also told me that she could hear me when her device was off and she was lipreading me. (But when her device is off and I sign, she says she can't hear me...) The whole thing is weird.
So, back to the SLT. She is still assessing Miss Kat's speech and spoken language. She is using the PLS IV (http://www.tpccpg.com/support/index.php?View=entry&EntryID=2473) and a single word expressive vocab test. She also did a speech test to see what sounds Miss Kat is using, and what she still needs to work on. They are going to take these results and help we figure out the path for Miss Kat's IEP. Once we have appropriate goals in each area, she will be able to get the placement and services she needs. I hope it works!
4 comments:
I'm surprised they never did any work-up! They obviously assumed the hearing loss was due to antibiotics/oxygen deprivation, but a work-up would have been nice to prove it! On the other hand, they did the full work-up for us, found nothing, and we were sent away with a pat on the head and the doc said "non-syndromic." Now we have some "other issues" like gastroparesis and the posterior urethral valves, so I'm wondering if he really does have a syndrome after all. We might never know, though!
The individual evaluation sounds great, especially for setting goals for Kat's IEP. The adults on the panel probably won't have the same experience as today's kids, though it is still a fight for equal access!
Syndromic deafness is often not diagnosed until symptoms come up, mostly in early adulthood. I agree, all born-deaf kids should be evaluated for syndromes having effects that might be preventable or treatable. The good news is that they are rare and usually do not cause additional problems.
Might Miss Kat be hearing you whisper as you talk with voice off? That would be an awesome feat for a CI, wouldn't it?
The deaf panel sounds like oral deaf adults, since you didn't mention an ASL interpreter. I agree, something is missing.
This is because oral deaf people are raised to "fit in" a hearing world and are encouraged not to make waves when the hearing world often fails to accommodate them. I was raised that way, too. "This is a hearing world. You must learn to live with that. You can't always expect them to bend over for you."
Today I hope that all deaf kids are taught the difference between fitting in and speaking up when appropriate.
I wanted to add that all the people on the panel knew ASL, to varing degrees. But none of them used it as their mode of communcation.
I can speak to Miss Kat's hearing you thing a bit, maybe!
I am Deaf myself, but I can speak and communicate orally. I used to have more hearing, like Miss Kat but mine progressed to a more profound loss later in life.
When I don't have my hearing aids on and I am lipreading someone I often "hear" them. Even if I have NEVER heard their voice before, my brain just gives them one and I hear them very clearly.
Is it possible when you are signing that you are mouthing too? Many hearing people do that, word by word mouthing. It is possible Miss Kat is lip reading that and her brain is putting a voice to it. Just an idea!
And yes, when you live this hearing loss thing for a while you get used to never having full access to anything. It is just part of life. You as a mother will be frustrated with it forever, and Miss Kat will be sometimes too, but there are other times when she will just accept it and move on.
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