Which hearing aids to try?

[Lin]

Hi, everyone, I'm looking for some advice. My son is 2 years old, born premature and with some complications. He passed the newborn hearing test, but then at some point lost his hearing. Here are his test results:

L
250 - 50
500 - 70
1000 - 80
2000 - 80
4000 - 90

R
250 - 60
500 - 60
1000 - 80
2000 - 90
4000 - 90

He received loaner Oticon Adapto hearing aids. Last week, the audiologist tested each of his ears separately, with the hearing aids, and the results were in the 40-50 range on all frequencies. Then audiologist adjusted his hearing aids as high and they would go, and told me that if that does not help, I should start thinking about getting the CI. We will have another test in 3 weeks.

I read about Oticon Sumo and Phonak Naida hearing aids on this site. Are those more powerful than Adapto, and could they provide better results for his degree of hearing loss? I'm not opposed to CI, but it is a major surgery, and I had hoped that my son had more time before needing it.

Lin

 

[TWA]

They suggested a CI for that loss???? Wow. I might be off about this, but that doesn't seem to be enough of a loss to warrant a CI.

Try both the Naidas and Sumos. They are the two most powerful aids on the market. I have the Naidas, and I have a very similar loss to your son's (much better at 250 and slightly better at 500, but worse at 1000+). And yes, they are far more powerful than the Adapto, which were my last hearing aids. I liked the Adaptos, but the technology is almost 10 years old at this point.

Do you know if the loss is progressive?

 

[JennyB]

Hi, everyone, I'm looking for some advice. My son is 2 years old, born premature and with some complications. He passed the newborn hearing test, but then at some point lost his hearing. Here are his test results:

L
250 - 50
500 - 70
1000 - 80
2000 - 80
4000 - 90

R
250 - 60
500 - 60
1000 - 80
2000 - 90
4000 - 90

He received loaner Oticon Adapto hearing aids. Last week, the audiologist tested each of his ears separately, with the hearing aids, and the results were in the 40-50 range on all frequencies. Then audiologist adjusted his hearing aids as high and they would go, and told me that if that does not help, I should start thinking about getting the CI. We will have another test in 3 weeks.

I read about Oticon Sumo and Phonak Naida hearing aids on this site. Are those more powerful than Adapto, and could they provide better results for his degree of hearing loss? I'm not opposed to CI, but it is a major surgery, and I had hoped that my son had more time before needing it.

Lin

Naidas and Sumos are both much stronger but Naidas are kind of the thing to use for profound losses these days because of the sound recover features.

I was also born premature and have a progressive hearing loss partially from that.

If he doesn't have language yet make that as high of a priority as you can. Now is a vital period for language development. Even if you don't plan on using it forever I would suggest finding someone to work with him and you with ASL. That way if you decide to go for a CI then he will have the language base to develop spoken language better, and if you don't decide to go with CI, well - same thing!

 

[Phi4Sius]

My right ear's loss is very similar to your son's left ear (my left ear is totally dead). And they're recommending a CI for THAT LOSS?! I smell BS.

Remember, many audiologists get a hefty commission on CIs by recommending them.

I grew up since I was 4 years old wearing a hearing aid in my right ear (my left ear's been dead since then as well) and I've done well anyways.

I'd get a second opinion- your son should be getting around 10 dB @ 250 Hz with a hearing aid if it's maxed out...not 50 dB.

 

[Lissa]

I was also born premature and my hearing loss did progress from severe to profound over the years as I grew.

Your son's hearing loss is not bad enough to warrant a CI, but over time if it progress to severe-profound it may be needed but right now, make sure you get the best HA's available to your son and for his hearing loss.

He also needs language in his life and to be able to communicate. ASL is highly recommended if your from USA

 

[deafdyke]

Yes indeedy.....Be VERY skeptical about CI. CI is awesome....but should only be a last resort option. I have to say I'm beginning to be kind of cynical about the marketing of CIs. SUMOs are good. You have to experiment thou.
Oh and I second Jenny and Lissa.
The more "communication tools" your son has in his toolbox, the better. I know the focus tends to be on speech speech speech......but with Sign, he'll be able to be bilingal AND have a full toolbox (he'll be able to function both with and without his hearing aids/CIs, and be able to use 'terps in group situions.....he'll also have the best of both worlds!)

 

[Lin]

Thank you all for your replies. I e-mailed our audiologist asking about both Phonak Naida and Oticon Sumo hearing aids, and hopefully will hear back soon. I'm certainly not going to rush into getting CI until we try more powerful aids.

Yes, my son's hearing loss is progressive, but the doctors don't know how far and how fast it will deteriorate.

As far as teaching him ASL now, I'm afraid that he will find it so much easier than listening and speaking, that he will refuse to communicate in English at all. He also has a developmental delay, and is getting different therapies from Early Intervention. All the therapists tell me that he is very stubborn and refuses to do the tasks when they become even a little bit difficult for him. They are advising against ASL at this point, and instead trying to get him to listen and make sounds to communicate. I think I will follow their recommendations for now, and see how things go.

Lin

 

[somedeafdudefromPNW]

Maybe the "difficulties" arise because of a communication barrier?

Just throwing that one out there.

 

[TWA]

Thank you all for your replies. I e-mailed our audiologist asking about both Phonak Naida and Oticon Sumo hearing aids, and hopefully will hear back soon. I'm certainly not going to rush into getting CI until we try more powerful aids.

Yes, my son's hearing loss is progressive, but the doctors don't know how far and how fast it will deteriorate.

As far as teaching him ASL now, I'm afraid that he will find it so much easier than listening and speaking, that he will refuse to communicate in English at all. He also has a developmental delay, and is getting different therapies from Early Intervention. All the therapists tell me that he is very stubborn and refuses to do the tasks when they become even a little bit difficult for him. They are advising against ASL at this point, and instead trying to get him to listen and make sounds to communicate. I think I will follow their recommendations for now, and see how things go.

Lin

No offense, but what you are describing fits into a pattern of experience that many people here have gone through, and a lot of them regret it.

I second Souggy's opinion. It is very possible that the "stubbornness" your son is expressing is the result of him rejecting a communication mode which is difficult and does not feel natural for him.

 

[JennyB]

Thank you all for your replies. I e-mailed our audiologist asking about both Phonak Naida and Oticon Sumo hearing aids, and hopefully will hear back soon. I'm certainly not going to rush into getting CI until we try more powerful aids.

Yes, my son's hearing loss is progressive, but the doctors don't know how far and how fast it will deteriorate.

As far as teaching him ASL now, I'm afraid that he will find it so much easier than listening and speaking, that he will refuse to communicate in English at all. He also has a developmental delay, and is getting different therapies from Early Intervention. All the therapists tell me that he is very stubborn and refuses to do the tasks when they become even a little bit difficult for him. They are advising against ASL at this point, and instead trying to get him to listen and make sounds to communicate. I think I will follow their recommendations for now, and see how things go.

Lin

I do not know your son, but I do know my experience both as a Deaf and disabled person and as a professional working with individuals with disabilities and hearing loss.

I want to share two stories.

When I was 2.5 I still had no language. Like most professionals my therapists advised my parents against ASL for me. They went against it and put me in a Deaf pre-school with a total communication program. I learned ASL and then French quickly followed and then English. I was successfully mainstreamed through school and now prefer to use ASL but I am fluent in 3 languages.

A girl a work with has a developmental delay as well. Same story -progressive loss and professionals advised against ASL because they thought it would hinder her spoken language. When I met her at age 13 she barely had any language at all. Maybe 50 expressive words at most. A year later she has over 200 words and can express her needs and her behavior issues have improved significantly. She will never have a native language though since they waited so long to give her ASL.

You also need to remember that your son cannot hear speech sounds. You can't expect him to learn to speak or hear when he can't. Even with his hearing aids right now he can't.

I would also like to caution you against the "professional" view. From my own experiences many professionals don't know much about hearing loss. Many of them can't even explain how a CI works, let alone the language options. Think about it this way - if you were English and your partner was French and you were raising you son absolutely no professional would tell you to no expose him to both language because they are afraid it would prevent development of the other.

You should also note that all of here at AD who have both oral and ASL skills are happy about it. Many people here have learned ASL later in life too and have valued it ever since they learned it.

Also as a professional who works with children with behaviors it has been proven that those are all attempts at communication. The behaviors will improve once he has means to communicate. I am not saying that they may, I am saying they will. I am a firm believer of ASL and actually linguistic modes where possible but at the very least a PECS program (A series of pictures that he can learn to use to communicate) should be explored. It will make your life easier and his too.

 

[deafdyke]

He also has a developmental delay, and is getting different therapies from Early Intervention. All the therapists tell me that he is very stubborn and refuses to do the tasks when they become even a little bit difficult for him. They are advising against ASL at this point,

On the OTHER hand, ASL is used for "augmentive communication" among the MR/DD community. Spoken language delay is actually VERY common among the MR/DD community. These kids can Sign better then they can speak.
And it's also possible that if your boy is exposed to ASL, they'll find out that the developmental delay isn't as severe as they think. There are a lot of kids who were thought to be MR but then they got alternative communication, and it was found they weren't as severely affected as orgionaly thought.
What syndrome/ developmental issues does your son have?
Do you guys have a teacher from the School for the Deaf? Just general EI therapists aren't enough for dhh issues.

 

[Lissa]

ASL is the best way to provide language to your child. Professionals are not always right, sometimes their suggestion are so absurd! My parents were told not to sign with me but they did anyway and took a night BSL class. I used sign language at home during my early years 3-6 years and I dropped the sign, my preferred communication method was speech but the sign did help me develop my speech.

 

[Lin]

On the OTHER hand, ASL is used for "augmentive communication" among the MR/DD community. Spoken language delay is actually VERY common among the MR/DD community. These kids can Sign better then they can speak.
And it's also possible that if your boy is exposed to ASL, they'll find out that the developmental delay isn't as severe as they think. There are a lot of kids who were thought to be MR but then they got alternative communication, and it was found they weren't as severely affected as orgionaly thought.
What syndrome/ developmental issues does your son have?
Do you guys have a teacher from the School for the Deaf? Just general EI therapists aren't enough for dhh issues.

My son has delays in fine motor skills and also behavioral and communication problems. Lack of speech is only a part of it, because he often refuses non-verbal communication as well. Just to give some examples:

He and the therapist are throwing the ball back and forth. A normal child is supposed to look at the person he is playing with. My son throws that ball while turning away from her and either closing his eyes or rolling them up to the ceiling. He often tries to do puzzles and shape sorters in that way, too, and only when it does not work he’ll turn and look at what he is doing. At the same time, he likes visual self-stimulation, like waving objects in front of his face, or lying on the floor and rolling toy cars back-and-forth in front of his eyes.

He does not point at things he wants, but waves his hand in the general direction of them, and whines until I figure out what to give him. He does not ask for help when he cannot do something by himself, and if the help is offered, he gets upset and starts screaming and throwing things.

He started with Early Intervention before he was diagnosed with hearing loss, and for months, all the therapists tried to teach him to sign “more” to get the next toy, or piece of the puzzle, or whatever. He knew how to do it, he knew that he will get what he wants if he does it, but he absolutely refused to use that sign to communicate. He’ll sit there screaming for 10, 15 minutes, obviously wanting something, but not willing to ask for it. Finally, he started to use “more”, but sort of hiding his hands at his side and turning away instead of looking at the person he was signing to. Next, they tried to teach him “all done”, “eat” and “drink”. He completely ignored these, and wouldn’t even attempt to imitate the motion.

After he received hearing aids, we had a meeting with EI coordinator and therapists, and they asked me if I wanted to teach him ASL or speech. I said speech, and at that point, they decided to stop working on signs, and instead to concentrate on non-verbal communication he is not doing, like eye contact and pointing, and also on developing listening skills and vocalizations. So, that’s where we are now. If he wanted to use signs, I may have thought differently, but if we have to fight to get him to communicate at all, then we might as well fight for speech.

To answer some questions, yes, his aural habilitation therapist used to teach at the School for the Deaf before she went to work for EI. She is fine with not teaching him to sign.

He is not considered mentally retarded, because his cognitive skills are normal for his age. Also, his initial EI evaluation was for suspected autism, and they said that he does not have it, either.

If he wants to learn ASL at any point, I’m not going to interfere, but, perhaps selfishly, I would like his first language to be the same as mine.

Lin

 

[JennyB]

He is not considered mentally retarded, because his cognitive skills are normal for his age. Also, his initial EI evaluation was for suspected autism, and they said that he does not have it, either.
Lin

All makes sense.

Just out of curiosity, and feel free not to answer if you are not comfortable, what detracted them from the autism diagnosis? I have autism and I have gone through several diagnoses, including aspergers and PDD-NOS, and autism but autism is the best fit these days. He sounds a lot like high-functioning autism. Most of us with HFA have no cognitive disability and many are above normal intelligence but at the same time seek sensory stimulation and lack the social interaction skills.

 

[Bottesini]

I used to be diagnosed with autism, but progressed to Asperger's syndrome, but I also know a person who got the diagnosis of "Autistic Behaviours due to hearing loss."

 

[Lin]

All makes sense.

Just out of curiosity, and feel free not to answer if you are not comfortable, what detracted them from the autism diagnosis? I have autism and I have gone through several diagnoses, including aspergers and PDD-NOS, and autism but autism is the best fit these days. He sounds a lot like high-functioning autism. Most of us with HFA have no cognitive disability and many are above normal intelligence but at the same time seek sensory stimulation and lack the social interaction skills.

Here are some of the things that lead them to believe he does not have autism.

He hates being alone. If he finds himself alone in the room, he’ll run out and search the house until he finds either me or my husband. He loves to be held and cuddled, and would spend all day in my arms if I let him. Even though he avoids the eye contact, he lets other people touch him, and hug him, and sit him on their lap. He likes working with his therapists and beams with happiness when they praise him for the task well done.

Also, he does not mind changes in his surroundings or daily routine, does not insist on wearing the same clothes, eating the same foods or using the same dishes all the time. He likes making mess out of food when he eats, playing in the sand and finger painting. He has no problems with big crowds of people or noisy public places. He is not too obsessive about his self-stimulations, and will stop if he’s offered something more interesting to do.

Lin

 

[JennyB]

Here are some of the things that lead them to believe he does not have autism.

He hates being alone. If he finds himself alone in the room, he’ll run out and search the house until he finds either me or my husband. He loves to be held and cuddled, and would spend all day in my arms if I let him. Even though he avoids the eye contact, he lets other people touch him, and hug him, and sit him on their lap. He likes working with his therapists and beams with happiness when they praise him for the task well done.

Also, he does not mind changes in his surroundings or daily routine, does not insist on wearing the same clothes, eating the same foods or using the same dishes all the time. He likes making mess out of food when he eats, playing in the sand and finger painting. He has no problems with big crowds of people or noisy public places. He is not too obsessive about his self-stimulations, and will stop if he’s offered something more interesting to do.

Lin

Makes sense. I do want to say though, that hugging/cuddling could be sensory seeking. Deep pressure. Playing in food, with sand, finger paints, could also be sensory seeking. Not everyone with autism is hypersensitive, some are hyposensitive and constantly craving stimulation. But, SPD (sensory processing disorder) and Autism are separate diagnoses. Has he been evaluated for SPD? It could explain the lack of language and the other behaviors and experiences. A sensory diet may help.

 

[Lin]

Has he been evaluated for SPD? It could explain the lack of language and the other behaviors and experiences. A sensory diet may help.

He did not have a separate SPD evaluation, but they asked many questions about unusual sensitivities, preferences, etc.

Thanks for mentioning sensory diet. I googled it, and it sounds like something that could help. I'll ask occupational therapist about it.

 

[JennyB]

He did not have a separate SPD evaluation, but they asked many questions about unusual sensitivities, preferences, etc.

Thanks for mentioning sensory diet. I googled it, and it sounds like something that could help. I'll ask occupational therapist about it.

Good idea to ask the OT. Sorry for getting off-topic...this is what I do for a living! I work with deaf/Deaf/Hard of Hearing kids with disabilities. I have many years experience, both first hand and with my clients. If you ever wanted to talk more feel free to PM me or we could chat over MSN if you wanted.

 

[deafdyke]

has delays in fine motor skills and also behavioral and communication problems.

Oh sort of like mild CP/ mild nereological issues?
Actually did you know that kids with mild nereological issues (like the ones that have learning disabilites and other mild issues) can also have a lot of language issues? It's actually quite common for an LD kid to aquire spoken language late.
It could be HFA but it could also be a learning disabilty or just general nereological issues.

and they asked me if I wanted to teach him ASL or speech. I said speech, and at that point, they decided to stop working on signs, and instead to concentrate on non-verbal communication he is not doing, like eye contact and pointing, and also on developing listening skills and vocalizations. So, that’s where we are now. If he wanted to use signs, I may have thought differently, but if we have to fight to get him to communicate at all, then we might as well fight for speech.

Oh I can understand that as of right now. Keep his options open thou. That's my best advice. Is he doing well with the dhh speech intervention?
I wonder if his reluctance with learning the sign more, may have been due to his poor fine motor......and I wonder if it's all interconnected....maybe a lot of his behavoiral issues may be due to having poor communication plus the poor fine motor skills. After all autism and undx hearing loss can look alike you know.