Daughter just diagnosed with severe-profound hearing loss - please help!

[KristinaB]

I was having a hard time responding in this thread until today. The topic was one I didn't fully have a grasp about since I have not been faced with it. Yesterday at the grocery store, I saw a mother with her 5 month old boy. He had 2 hearing aids on. She was signing to him as she went through the produce isle. His eyes followed her everywhere. I asked her about the baby. She mentioned that he was born with a severe to profound loss and got his first HA's at 3 months. She and her hubby started ASL with him as soon as they started learning. He tries to mimic her, but with his HA's, he does not do well with sound. He still is not babbling at all. He sits totally silent, but tries very hard to repeat her signs. She said that The Deaf Service Center here in town told her that her best first step was to begin with ASL and to do simple signs for foods and drinks and things like that. As the parents learn more, he will learn more. They are already members of my deaf club as well. She said that she was given the opportunity to start with HA's and then go the route of CI's down the road, or just to stay with the HA's until they were no longer enough. She and her hubby are waiting for this child to get a little older to allow him the choice of a CI or not, but, not before she and her hubby do a lot of research. They are already making plans to move closer to the FSDB for that advantage for this child.

It makes me really realize that ASL for any child, but most especially for a child with hearing loss is so, so important. I don't really think stressing over speech is tantamount to a child having a happy and full childhood. I am learning more and more about D/deaf people with all kinds of childhoods. But there are those who had very supportive families that thrived. Speech was not stressed upon and came when it came or not. Let the child learn with ASL and go from there. If they develop speech, then that's great, if not, don't stress and don't ever take it out one way or another on that child. It's not their fault.

Okay - off my soapbox for now.

 

[GrendelQ]

one of the things I just started wondering about as I was reading in here was - who determines/how was it determined about the things that are "key indicators" on the the types of EI and other diagnostic tests regarding audiological hearing loss? What bodies/agencies/people? And what are those beings <agencies, etc> connected to in terms of boards, foundations, societies.....

Hi dogmom, I think guidelines vary by state. And the type and quality of the resources you have access to can vary even further by town.

We found ourselves awash in great resources and options from the start. You mention agencies, societies, foundations: I think the strongest initial influences were from the state, in terms of the guidelines making EI and MASS Comm. for the Deaf services (such as a Deaf Mentor and Family Sign) available to us immediately, even before any formal diagnosis or assessment, and from Children's Hospital's Deaf & HOH Program, which is such an outspoken advocate for bilingual education for the deaf.

In MA, if a child is flagged in the universal newborn screening program, this document explains what services begin, and a team is convened to provide access to the resources chosen by parents. The laws and regs. /criteria are outlined here. For us, our initial committee was of our choosing, and consisted of a pediatrician specializing in intl adoption, an EI SLP fluent in ASL, our Deaf mentor, the director of the Deaf and HOH program at Children's Hospital, and later the head of early ed at my daughter's school.

Early intervention and audiology referrals are made as a result of this test, or at the request of a parent, doctor, or other professional. A deaf child is considered at risk for language delays, you can see the criteria and milestones via the link above, and gets services without question. EI services are provided by independent companies covering specific towns. In our case, our EI provider transferred their services for the next 2 years to the grounds of the bi-bi school for the deaf we chose, an hour from the borders of their catchment area, despite there being two oral-based schools for the deaf within our area; covering the cost of participating in ASL-only playgroups and parent sessions and developing Li's ASL language development through sessions with several ASL-fluent language specialists. They pointed us to the MA Comm. for the Deaf, to the family sign program, and HOH and to local schools for the deaf, including TLC.

The MA Commission for the Deaf and HOH provides extensive resources (check out this PDF), including family sign language and a Deaf mentor to guide families further. Its staff is listed on the site, and the Commissioner is Deaf. I called the Commission directly, and they sent a massive binder of resources, signed us up for family sign, pointed us to EI, and assigned a Deaf mentor who introduced us to the local Deaf community, to ASL and working with interpreters, toured parent infant programs and all types of deaf schools with us, and helped us with our first IEP.

The initial audiology tests made at the referral of our pediatrician when we said we thought Li was not hearing led us to the Deaf & HOH Program at Children's Hospital, Boston. CH made two strong recommendations after determining that Li was profoundly deaf: 1. continue an aggressive pursuit of ASL -- language was needed immediately -- and 2. consider hearing aids. We did both. The Director of their Deaf and HOH program, who has authored several books on ASL, pointed us to TLC, a bi-bi school, for its wonderful ASL-only parent infant program for kids from 0-3, to EI, and to the Family sign program through the MA Comm for the Deaf and HOH.

But I think that much of this was driven by us as much as these professionals: we conducted a great deal of research and they listened to what we wanted.

 

[Beach girl]

I really admire you, Grendel, for the way you took this on and attacked the issue of getting information and resources right from the start, in a very thorough way. Li looks like she's thriving, and you too, with all you've done.

 

[Bhaltair]

I have been lurking alldeaf.com for some time and I felt the need to post something here. Your daughter is going through exactly what I have gone through, of course, if you make the decision my parents once made.

I was also diagnosed with severe hearing loss on my left and profound loss on my right. My parents went to several audiologists to confirm my hearing loss and options were presented to them. Leave it as "as-is," hearing aids, or cochlear implants.

They decided to go with hearing aids (the best and most difficult decision they have ever made) since their decision has shaped who I am today, past, present, and the future. As soon as I got these hearing aids, my mom would read stories to me on a daily basis through speech and sign language as well. She emphasized how important it is to learn sign language as a first or second language, as well as speech.

I went mainstream in kindergarten to grade 2, went to a deaf school from grade 2 to grade 8 and went to a hearing school from grade 9 to 12. Throughout the years in deaf school, I became very fluent in ASL and was able to speak flawlessly through years of speech therapy. In the hearing world, no one could tell I am deaf unless I pointed it out.

I am now a Mechatronics Engineering graduate and decided to go back to school to get an Electrical Engineering degree with 3 full-time certified interpreters.

The point of this post is, don't worry about your daughter's future. What's important NOW is to teach her sign language so she can communicate with you and if you want my own opinion, hearing aids is the best solution for your child. If you ever plan to place her in the deaf community, cochlear implants is highly frown upon.

Let her have her own identity... being deaf while being able to hear. It is a very, very unique gift! Also, she can always get cochlear implants when she gets older.

Good luck with whatever decision you have made.

 

[GrendelQ]

I really admire you, Grendel, for the way you took this on and attacked the issue of getting information and resources right from the start, in a very thorough way. Li looks like she's thriving, and you too, with all you've done.

Thanks so much Beach girl! I think we've been extraordinarily lucky to live in a state where there are so many great resources available and multiple options to choose from. I tend to point them out when possible so that others might be aware that such great resources either are or should be available to them as well. I hope the OP can search out the many opportunities we've found and make her own choices, rather than feel rushed into one single path presented by an audi.

 

[deafdyke]

why parents feel it's so urgent to implant their babies if hearing aids can do the same job of stimulating the auditory nerve. I mean, why not use hearing aids and wait till the kid is older before doing CI?

I do understand that hearing aids don't work for all deaf people. I am just speaking about parents whose babies CAN get sound from hearing aids but opt for the CI anyway.

AMEN!!!! Like I think we ALL agree that there are right off the bat cases, as well as auditory nereopathy that SHOULD be implanted early. Deep profound loss is nothing to mess with. But it's impossible to tell how well a baby can understand with HAs, if they get some speech benifit. Besides, is there a HUGE difference between say deep profound vs profound with hearing aids? Or a huge difference between implanting THE VERY SECOND a loss is discovered vs implanting around toddlerhood, when a kid can respond better on an ABR?

 

[MandyCare]

success is the future for your child

Great news your child has been born in an era where there are lots of services and support available. I have similar hearing loss range and now am a General Manager in a hearing community. Goodluck!