Gifted Issues Discussion homepage Forums Twice Exceptional Hard of hearing and gifted?

We got the news from the audiologist yesterday that my ds5's hearing has gotten worse. Our next step is moving to hearing aids (actually only one because his other ear is so bad that hearing aids will not help).

Does anyone have experience with this? I am so overwhelmed that I don't know which questions I need to be asking.

Wow, what an enormous challenge to be facing.

I have no personal experience with this, but I do have some professional knowledge that may be helpful. Take this for whatever it's worth to you, because every individual and every family is different.

- Look into whether your son is a good candidate for a cochlear implant. Last time I checked in on this issue, insurance companies would only pay for an implant in one ear. Your son actually sounds like an ideal candidate, because one ear is clearly worse, and because that ear doesn't benefit from hearing aids. (An implant destroys the hair-cells in the ear, so you can't go back to a hearing aid, but if a hearing aid already isn't useful . . .) Your son is also a good candidate in that his hearing loss has been progressive, so he presumably has had at least a few years of near-normal hearing for his brain to learn speech sounds. People like that do better with "learning how to hear" with an implant than people who are pre-lingually deaf.

- Consider getting your son some exposure to sign language. He can continue to be primarily a spoken-language user, but sign language will give him an extra set of skills and access to an additional community that will give him a sense of support and connection as the years go on. Many "oral deaf" kids, even those with excellent speech skills who thrive academically, discover the deaf signing community in adolescence or young adulthood and are amazed at how easy and comfortable communication can be. Often they are very sad and angry that they weren't exposed to it sooner.

- If you do go the sign language route, avoid "signed English" communication systems. They are clunky and artificial, and the brain does not process them as natural language. Go for the real deal -- American Sign Language (or whatever the indigenous sign language is in your country).

- Also, be prepared for a lot of dis-information about sign language from medical professionals. Particularly if you go the implant route, you may be told that you must not expose your kid to sign language, because it will interfere with his progress with spoken language. This is completely untrue, and I would quietly ignore it. (True fun fact: among congenitally deaf people, the ones with the best English skills are deaf people with deaf parents who grew up with sign language as literally their native language. Obviously doesn't apply to your case, but it goes to show that there is no conflict between the two.)

Wishing you all the best!

I can send you the name of a school I know about that's strictly for hearing impaired kids that's been around for a long time. It starts in pre-K and goes all the way through HS. You can PM me if you want the name. I don't know where you live but maybe you could just contact them via phone or e-mail to see if there are resources in your area, or to head you in the right direction.

My son age 9 is almost deaf in his right ear- 70 dB. 85 dB is "helen keller," really deaf. We didn't find out until age 6. Kids who are deaf/hearing impaired in one ear are ten times more likely to fail a grade and have lower verbal/reading scores.
Definitely get a hearing aid in the ear that can work for. Consider a cochlear implant too for the other ear, if that would work.
I would try to avoid schools that cater to the deaf, if possible, since I think (IMHO) their academic standards are so much lower. We have an IEP and my son gets an FM system, where the teacher wears a microphone which transmits her voice wirelessly to the hearing aid across the room.
My son has done really, really well with his hearing aid. He wears it all of the time. His speech is excellent and he had gotten a 145 at age 6 on the verbal part of the WISC. He rocked the OLSAT this year, again with a 99th% on verbal and overall.
It will be okay! Get a hearing aid if you can. We had a party for the hearing aid when he got it at age 6, with a cake!
There is something called a BAHA, where you shunt the sound from the totally deaf ear into the ear with the hearing aid.

Hi
I have a 12 year old DS who is GT, Hearing Impaired and ADHD. It can be a lot to deal with. We actually have a family history of sensory - neural progressive hearing loss. He began losing his hearing around age 3. I started losing my hearing at 10 years old. I know it seems awful but it's not the worst thing in the world. My DS and I both are of the opinion that we adjusted easier to the hearing loss than adults do to it. If his hearing loss is sensory a Cochlear Implant maybe a very good option for the in the bad ear and a hearing aid (high quality digital) in the other ear. My DS and I both wear binaural hearing aids and most people would hardly notice if they couldn't see them. It is an added challenge but one that technology has meet a lot of the needs of hearing impaired people. My Mother and Aunt both have 2 cochlear implants and do amazing with them. Many insurance companies pay for 2 now. If the hearing loss is conductive the BAHA is a wonderful option and again most insurance companies cover it. I have a hearing loss ranging from moderate to profound and my DS is moderate to severe. 90 dB is not deaf. They can measure well over 100 dB before deaf. We will both get Cochlear Implants at some point but still are highly functioning with hearing aids.
Mild:
for adults: between 26 and 40 dB HL
for children: between 20 and 40 dB HL
Moderate: between 41 and 55 dB HL
Moderately severe: between 56 and 70 dB HL
Severe: between 71 and 90 dB HL
Profound: 91 dB HL
Totally Deaf: Have no reading at all.


He does amazing and it has not negatively effected his education. He uses an FM system at school in classes he needs it and we both have different things at home. I have things that hook up my TV to my hearing aids directly that are wireless, Links for my iPod to play directly to my hearing aids, Alarms that shake the bed to wake up in the morning. There are so many options. Advanced Bionics actually just came out with a water proof Cochlear implant that you can swim with it on!

My son is learning Mandarin and speaks it better than anyone in his class according to his teacher. He plays violin and piano. High quality hearing aids can make a huge difference. I know it feels really overwhelming but they can succeed with a hearing loss. He goes to a school that has a fully integrated deaf and Hard of Hearing program. He doesn't participate in the program because it's academically a bad fit. Most of the kids in the program had a delayed diagnosis and delays in their academics. It has been a plus anyway because the students and staff are used to hearing impaired & deaf kids. I would not necessarily recommend a deaf school for a HG kid.


Please feel free to private message me. I have worked with hearing impaired stuff for many years and would be happy to help answer any questions you have about it.

I would absolutely request an IEP from the school. It allows for FM systems, preferred seating and other things.

Jtooit

First, apologies if I'm forgetting backstory you've told before (I had a quick look but didn't find any) but what is known about the cause and prognosis of your DS's hearing loss? Is it expected that it'll be permanent, or is it treatable or something that may improve?

At about that age (for roughly 18 months, when I was 4-6, I think) I was deaf [and gifted ;-) ] - apparently I was "profoundly deaf" for at least some of that time. Irritatingly I know practically nothing of the medical details; my parents didn't keep notes or remember much and the records have since been lost. I had a long history of ear infections and this was probably just extreme "glue ear". What I remember is going to the hospital, seemingly often, to do hearing tests, which was quite exciting, and having weird daily exercises to do such as blowing up balloons with my nose - something about needing to open my Eustachian tubes. I recovered completely.

I got very good at lip-reading - it may be that this led to the problem not being spotted before it got really bad. Presumably giftedness helps at least a little. It might be worth making sure that people who interact with your DS are aware of the contribution lip-reading can make to their being understood - tell them stuff like keeping their hands away from their mouths, making sure the light is good and DS is looking at them before they speak, etc. That's easy for people to do and can really help, in addition to whatever else.

If your DS's hearing loss is likely to be permanent, totally agree with MegMeg that it would be good for him to learn a (real) sign language starting ASAP. Indeed as with any additional language, learning sign language would be good for him anyway.

Thank you all so much. I wrote this post and then retreated into the land of denial or something. I'm feeling stronger now.

My son was born with congenital CMV disease. We were told not to expect him to walk or talk. Thankfully, he both walks and talks. He has had profound hearing loss in his left ear his entire life and is now exhibiting moderate loss in his right after almost 5 years of perfect hearing there. I can't even express how grateful I am for those 5 years of hearing. He speaks English, he knows all of the letter sounds and blends of our language. He is bright.

There is no trajectory that he is expected to follow. He could continue to lose more hearing, he could stay the same, it is possible (but highly unlikely) that he will regain hearing.

He has an IEP already, they had told us that he might lose that IEP after it expires in 2013 if he does well in school. I am prepared to fight to keep it. It is in our favor that I already have a good working relationship with his future school. I am thankful that I played my cards the way I did when my dd was at that school last year, once they saw dd's COGAT scores they were surprised that I wasn't more vocal in her favor. (She was getting the education she needed elsewhere and we were just at that school for "fun.")

We meet with another audiologist on Tuesday. This is his regular audiologist who has tested him since 6 months of age. The test we had two weeks ago was with an Au.D. from the school system. I have no doubt that her assessment is correct, we just need to get in with our regular Au.D. to move to the next steps.

The first audiologist said that his hearing loss is right on the cusp on needing versus not needing an aid. I would rather do too much than not enough and I would also rather have him get used to using a hearing aid at a younger age. We were told when he was first diagnosed that aiding his bad ear was out of the question because it would be too confusing since his good ear was so good. I am not sure if cochlear implanting is the answer at this point or not. I will be sure to ask the ENT and Au.D. next week.

I will put in a call to the school system on Monday to ask about ASL. I wonder if they will teach the whole family or just ds?

Where we live we have several options. Local public school with an IEP and the option of moving on to a full time GATE program in another building (where his sister goes), an aural program, an ASL school, or a private day school. At least those are the options I know about now. I am glad to hear the opinion that matches my gut feeling of keeping him mainstreamed.

Thank you for taking the time to respond to me. It really means a lot.

Thanks so much! I think I am connected to the right group in my local area but this would have been a godsend if I didn't have those contacts in place. I really appreciate it!

I have worried we would lose my son's IEP since he is 2 grade levels above. They told me he will never lose it because he will always be hearing impaired. Your son is pretty hearing impaired, so they really must always give him an IEP. That is on the list of conditions that can really affect a child's education. So just keep reminding them of that. He must have an IEP!
I would push for trying a hearing aid in that one ear. The only downside to a hearing aid is the cost. My son has a conductive loss, which is a "better" kind of loss than a SNHL (nerve) loss, which is presumably what your son has (?). He has a Phonak hearing aid, which cost $3500. Our insurance paid $500 and we paid the remaining $3000 out of pocket. Oh well. The county paid for the FM system, which is $1500.
ASL can be great- if you are thinking about it, you should try to get you and your family in ASL classes too. Even if you have to pay for that yourself.
Personally, I would favor being in the public school GATE program. Often deaf programs have lower academic standards (so I've read). Other things you can work with the school- trying to have your child's classroom carpeted, which really reduces noise. Our classrooms are. Or at least putting tennis balls on all of the legs of the chairs, which is easy to do and cheap, and really reduces the noise in the classroom for your child. Preferred seating is also very helpful.
I wonder also if kids exposed to CMV can have other issues (learning disabilities) besides the hearing loss. I don't really know.

Hi,

Wow there is a lot of great experience on this board! I have found that it can feel pretty lonely, as it is hard to find others parents of kids who are both gifted/HI.

We are at a similar point as I have a 5 year old son as well. . He has bilateral severe-moderate hearing loss, and uses BTE hearing aides and a FM system. He got his hearing aids at three, although they suspect that his losses are congenital and prior to this relied on lip-reading. Speech is an ongoing issue (clarity not comprehension), as well as a whole host of other medical issues, however he is doing great. We felt that if d/t his hearing and his hands (another story) he was going to have to work harder than the majority of the class, on material that was not challenging, he would quickly turn off of school. His medical history is complicated, and we found that with all the therapists etc. they tended to set the bar very low. We have had to advocate to raise that bar with everyone, and once they do he rises to the challenge. He was just accepted into a quite competitive gifted charter school for grade one. We are so fortunate to have this as an option.

He has an IEP, and we have contracted an educational audiologist to assess the classroom and assist the teachers in understanding how best to meet his needs. The teachers have been super accommodating so far, I suspect because they are used to dealing with all of the quirks that come with gifted kids.

I think our biggest hurdle at this point is social. He is great with his siblings, but just hasn't connected with kids at school - especially at recess.

I am sure you are feeling uber-overwhelmed, as I was/still am at times. However,I have learned first hand how amazingly resilient children are, and I trust that.