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Hard of hearing and speech disorder (long, sorry)


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  #1  
March 13th, 2009, 02:38 AM
somo_chickenlady's Avatar Mega Super Mommy
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Location: Bradleyville, MO
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My son Greyson is 10 and in the 4th grade. I have mentioned his issues in a couple other introduction posts, but I thought I'd put it here also.

In the summer after Kindergarten he was dx with Sensory-Neural hearing loss in his right ear. He is 80% deaf in that ear. The doctors are pretty sure he has had it since birth, but he was never tested for hearing (as far as I know) so it was never caught. The only reason we found out about it was b/c of his Kindergarten teacher. I'm sure we would have found out eventually, but she was the one that pointed it out to us.

Greyson was in class one day during the last week of Kindergarten, and he was on the computer playing a game with headphones, and the sound only came out of one side. He kept telling her that there was no sound and to please turn it on. She finally came over and tried the headphones on herself and they worked fine so she put them back on and told him so. Again he kept telling her that there was no sound. She took them off and turned them around so the sound came from the opposite ear, and he said "Oh thanks! I can hear it now!" She told me that afternoon when I picked him up, and I immediately made an appt with his doctor to get it checked out.

We got in to see our family doctor that week, and she said he just had fluid in his ears...and gave us an antibiotic. I didn't quite believe that, and never filled the antibiotic. How is an antibiotic going to fix fluid in the ears?? *sigh* At the time I was nannying for a family, and the wife of my boss' business partner was an ENT, so I asked for her number and called her the next day. When we got in there she said he did have some fluid in his ears, but it shouldn't cause that much hearing loss. Some, yes, but not THAT much. She took some xrays and gave him a quick hearing test.

Her hearing tests told us that he was only about 50% deaf in his right ear, but the really surprising news was that they told us that his adenoids showed up being really large in the xrays and she suggested they be removed. I told her "That's funny b/c he had them taken out when he was 3." LMAO Well, they grew back, and were even bigger than they were when they were taken out. Strange, huh? Only my son. lol

Anyway, she referred us to a hearing specialist in town to get a hearing aid. He is actually the first doctor to put a Cochlear Implant in an adult. I completely trust him, and he's a great doctor. He did a bunch of tests, MRI's, etc. He told us that he was actually 80% deaf in his right ear, he can't hear most consonants, and there are only very few sounds that he can hear. He told us that with the type of hearing loss he has, his ear actually can't process the sound waves, and of what he does hear is just garble. If we tried giving him hearing aids, all he would hear was LOUD garble. The only thing he said was, that if he got to the point as an adult where he spent a lot of time in conference rooms or meetings, that they could give him a type of hearing aid where the side in his deaf ear was a microphone, and the side in his hearing ear was a speaker, so any sound going into his deaf ear was heard on the other side. Cool, huh? I doubt he's going to be in one of those careers, though. He has said since he was little that he wants to be a Zoologist, so he's probably going to be out and about most of the time.

Well, that same summer after we found out about his hearing loss, our niece was getting baptized. At their church we ran into Greyson's vice principal. She plays the organ at their church. lol We told her about Greyson, and she said as soon as school started she would get the ball rolling on anything we needed to do. The hearing specialist suggested an FM system, and as soon as school started, true to her word, she remembered and had one waiting for him. We saw her in July. She has a good memory.

He's been using the FM system since the start of 1st grade, and has preferential seating in his class. We have yearly IEP meetings with the principal, vice principal, his teacher, us, and the hearing specialist. In 2nd grade his teacher (1st year know it all new teacher) decided she knew better than we did, and didn't think the FM system was really helping him, so she stopped using it without talking to us first. When we found out about it we raised hell and she got in a lot of trouble. She has refused to speak to us ever since and gives us dirty looks every time she sees us, even 2 years later.

We live in Nebraska, place where people have absolutely NO accent, and our son has always had a Boston accent. People have commented on it his whole life. We always just thought it was cute. In 2nd grade they started bringing up the fact that he mispronounced his /r/ but that it was still age appropriate so they didn't want to do anything yet. This year they decided that it was no longer age appropriate, and we should have the Speech Therapist take a look at him. She called us a couple weeks later and told us that when she observed him and spoke to him, he articulated the /r/ about 25% of the time when it was at the beginning of a word, but never when it was in the middle or end of a word or in a blend. Instead he said /w/. She thought he would be a good candidate for Speech Therapy, and we needed to have another IEP meeting.

At the IEP meeting, she actually told us that he actually doesn't articulate the /r/ at all, and doesn't even try to. Even in my name or his father's name (Geramé, pronounced like Jeremy) he said wrong. He also says the blend of /pl/ as /pw/. He started Speech Therapy this last week, and he likes it. There are 3 or 4 other children from his class that go to ST also, and they all go together and they make it fun. The speech therapist insists that he can actually hear the /r/ sound and that his hearing doesn't have anything to do with his articulation disorder. I think it at least has some part to play in it.

Well, that is his story so far. Sorry it is so long. If you got through it, I appreciate it. I've never been to a forum that has a sub-board dedicated to hearing and speech disorders. I'm glad there are people out there that might understand what we're going through.
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  #2  
March 13th, 2009, 04:45 AM
quietsong's Avatar Just Another Slacker Mom
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Well, side note first: people in Nebraska have an accent to me. LOL.

Anyway, welcome! I am so glad that Greyson's kindergarten teacher discovered his loss and that you guys have what sounds like an incredible support network around you. Single side deaf has got to be one of the hardest things to catch, because with one working ear babies would seem like they have no problem at all. It's almost easier to have a bilateral loss so that you actually know it! I do agree with you, I can't imagine his hearing would NOT have an effect on his articulation! Maybe if you had known about his hearing loss from birth it might not affect it, but when losses go unknown for that long they can play into things in many different ways.

You have done fabulous with him! I'm glad the FM system is working so well. Were they talking about a BAHA (bone-anchored hearing aid) potentially? I'm just curious more than anything. I've heard wonderful things about those for single side deaf people, though I wouldn't do it at this point either in your shoes.

I'm glad you shared your and Greyson's story with us!
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  #3  
March 13th, 2009, 12:06 PM
somo_chickenlady's Avatar Mega Super Mommy
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Do you mean like Cochlear Implant? I guess I really don't know what a BAHA is. I'll look it up when I'm done with this post.

If you mean CI, the hearing specialist mentioned something about that, but he said that his hearing loss is only on one side, and he can hear 100% perfectly in the other ear, putting a CI in would be too strange for him. Also, he said that you never know what could happen in the future, and we don't want to completely destroy what hearing he does have in that ear, when there could be a fix for his problem when he is an adult. Getting a CI would remove any chances of him being able to get that done.

Right now he seems to be doing pretty good. He's always been able to read lips, I think that is how he coped when he was younger, before we found out about his hearing loss. His hearing specialist wants him to be off the FM system by sometime next school year. I think he will do fine as he has learned to work around his hearing loss, and to move his head to where the teacher is standing, and the teachers have learned to repeat questions children have asked behind him, etc. The school district's hearing specialist (not sure of her exact title, she is the one that collaborates in his IEP, otherwise she does nothing with Greyson) is a PITA, and even though his doctor wants him off of it, and we've been telling her this since 2nd grade, she insists he still use it. I'm so glad she is retiring at the end of the year and we get a new, hopefully nicer, hearing specialist. She is deaf herself, but she is bilateral, and she compares his hearing loss to hers, and that is why she wants him to keep it. I think that is like comparing apples to oranges, though.
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Last edited by somo_chickenlady; March 13th, 2009 at 01:02 PM.
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  #4  
March 13th, 2009, 12:48 PM
quietsong's Avatar Just Another Slacker Mom
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A BAHA is totally different from a CI. I don't know a whole lot about them, but basically they put a little "post" into the skull with a small piece that is exposed, and a processor sits on that post taking in sound and transmitting the sound through the post. Like I said, I am very much not familiar with how they work other than they're supposed to be great for single side deaf.

I completely agree with you, CI are not at all a good fit for someone who can hear fine in one ear! Unilateral and bilateral losses are completely like apples and oranges, like you said, and I'm sorry your specialist insists on comparing the two.

I'm glad he's doing so well. That would be awesome to have him off the FM system soon! I am always amazed at how adaptive kids are to hearing loss and how they are just able to pick things up to help them along.
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  #5  
March 13th, 2009, 01:06 PM
somo_chickenlady's Avatar Mega Super Mommy
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Quote:
Originally Posted by quietsong View Post
Unilateral and bilateral losses are completely like apples and oranges, like you said, and I'm sorry your specialist insists on comparing the two.
I fixed my post and was more specific. I realized I called two people a "hearing specialist". The person that is the PITA is the district's hard of hearing specialist, but I can't remember her exact title. I don't know why she is so demanding about him using the FM system, especially when we as his parents give permission for the teacher to try not using it, and the teacher thinks he would be fine without it. This lady, as far as I know, doesn't have any contact with him, and only knows about him through us. We only see and hear from her once a year for the IEP. I don't see how she can tell us what to do when she doesn't have any knowledge other than 3rd party about Greyson.
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