Concerned mom looking for support...

LeighAnnasMom

LeighAnnasMom

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Hello!

My youngest daughter who just turned 6 months old was diagnosed at 3 weeks with moderate to moderately severe bilateral sensorineural hearing loss. Her diagnosis came in the midst of an international move (military family going to be overseas up to 2 years). We currently call Cairo, Egypt home. She has had hearing aids since she was 3 months. The first month we were not 100% compliant but we wore it as much as se could tolerate it which, some days was no more than 2 hours. Today she wears them 8 to 12 hours a day. My question/confusion is about early intervention. When we initially were given her diagnosis we tried to get "early intervention" while we were in the states and were basically told she was "too young" for meaningful therapy and that we could get similar results by just letting her wear the hearing aids and just talking to her. She is now 6 months very interactive and responsive to sound. We see an audiologist here but an English speaking speech therapist is hard to find here and I am trying to figure out if I shou,d pack up the family and head back to the states or will I be able to hang in there with instructional videos and YouTube? I am trying to balance meeting my youngest daughter developmental needs with keeping our family together. I also have a 3 year old and I am hesitant to make a drastic move because there have been so much change for her in the last 6 months (new sister, new home, new school, new culture, new language, etc.). Any advice would be appreciated.

Thanks in advance :)
 
No. I don't. This entire experience is new to me. I am trying to learn as much as I can. I. Just hate the feeling of missing something. There is so much I don't know.
 
LeighAnnasMom said:
No. I don't. This entire experience is new to me. I am trying to learn as much as I can. I. Just hate the feeling of missing something. There is so much I don't know.
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I am a deaf person..bilingual which means I am fluent in American sign Language and English.

You can start out by contacting the deaf agencies in Egypt and start learning American sign Language or Egyptian sign language because your child will need full access to language. You can Google ASL on YouTube or the website.

There is a huge American deaf community with our own cultural values. I am not sure about Egypt. Hopefully someone here who lives overseas will know more.

I would start out by learning basic signs like "milk", "toy" "mommy" "daddy" and a few more and start signing with your daughter.

Any questions, feel free to ask.
 
Thanks for the links. I have been directed to those sites by google searches I've done. I guess my question is about early intervention. I don't think I fully understand what that means. Some sites I've seen list hearing aids and cochlear implants as early intervention while others refer to a program that includes therapists and home visits.
 
LeighAnnasMom said:
Thanks for the links. I have been directed to those sites by google searches I've done. I guess my question is about early intervention. I don't think I fully understand what that means. Some sites I've seen list hearing aids and cochlear implants as early intervention while others refer to a program that includes therapists and home visits.
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A good early intervention program would ensure the child has access to language which is sign language for language development.
 
Is this something I can do with videos and reading? Or does it have to be a specialist? Does the person need to be native english speaker? As it stands we will return to the states before her 2nd birthday. If there was no other rational option I would pack everything up tomorrow and my husband, my daughters and I would have to adjust to living on different continents. It would be a real strain but I would do it if there were no other options. I would hate to think something I did (or didn't do) caused problems for her later on in life. Excuse my ignorance...
 
We started early intervention at 1YO, even before having a conclusive diagnosis of profound deafness, because my daughter was coming from an institutional environment in China and we knew there'd be a delay in acquiring language. By good fortune, our assigned SLP was competent in ASL, and because there was no indication of hearing, we just proceeded with communication therapy based on learning ASL without delay. I found EI to be of very high value, but more as a guide to teaching me how to teach my daughter, than as a standalone teaching session for her. So, with that in mind, I think that you could likely learn the principles of whatever approach you choose by remote, and perform the role yourself for the first few years.

Learning ASL (or the sl of your choice), you'd be in a good position to teach your child just as you are being taught.

The benefit you'd miss out, not participating in person, would be group ASL playgroups guided by teachers of the deaf and fluent ASL-using adults and members of the deaf community. I really found those 3X weekly sessions to be immensely valuable, and key to reinforcing my daughter's then burgeoning ASL, but have heard from many parents that it's rare to find in many locations.

If a spoken language is your goal, there are online resources for auditory rehab available via sites like http://www.hearingjourney.com/Listening_Room/ or Cochlear | Hear Now. And Always (many online seminars), although using these would depend on your child being able to get a lot of access to sound via those HAs. Otherwise, it might be too difficult.
 
LeighAnnasMom said:
Thanks for the links. I have been directed to those sites by google searches I've done. I guess my question is about early intervention. I don't think I fully understand what that means. Some sites I've seen list hearing aids and cochlear implants as early intervention while others refer to a program that includes therapists and home visits.
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Early intervention can apply to both the use of assistive technology such as hearing aids and cochlear implants, and to a classroom placement, supports and services such as speech and language therapy etc.

Your understanding is pretty much correct in terms of her not being old enough for a classroom placement just yet. Usually that occurs around 18 months. One thing you are definitely missing is home visits by an itinerant teacher of the deaf.

Have you been offered any support via regular online (maybe) Skype sessions with a TOD?

I would highly encourage incorporating the use of sign in conjunction with your speech as much as possible. In terms of resources for learning ASL in Egypt, you could get linked up with one of the schools for the deaf for a "distance learning" ASL class.
 
GrendelQ and CSign thank you! You answered my question perfectly. I planned on incorporating signing. I am still researching support groups here. I do no that there is a significant culture here but the language barrier can be a hurdle at times. I see an American pediatrician here who is not experienced in hearing loss but is reluctant to refer to those resources where English is a second language because of her concern of picking up an accent? I am new but logic tells me that that's not a huge deal because of the short time we are here. My 3 year old was raised in the states until 3 months ago and she still pronounces words wrong. Is that a valid concern?
 
LeighAnnasMom said:
GrendelQ and CSign thank you! You answered my question perfectly. I planned on incorporating signing. I am still researching support groups here. I do no that there is a significant culture here but the language barrier can be a hurdle at times. I see an American pediatrician here who is not experienced in hearing loss but is reluctant to refer to those resources where English is a second language because of her concern of picking up an accent? I am new but logic tells me that that's not a huge deal because of the short time we are here. My 3 year old was raised in the states until 3 months ago and she still pronounces words wrong. Is that a valid concern?
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In my opinion, an accent should be the least of your concerns. Getting your child to develop language at this age so she is able to develop deep critical thinking skills later is very very important.

I am a strong advocate for language development in children, not speech skills. The reason for this is that I have seen way too many children end up with language delays and deficits for not having full access to language during their first 5 years. I am glad you are planning on incorporating signs. As a deaf person who grew up with limited access to language, that's the best gift you can give to your baby.

If you want a CI, that's your decision but pls keep up with the sign language.
 
That's what I thought!

Another ignorant question but what is the difference between language and speech development?

At this point I don't think we are ready for CI. Audiologist doesn't think she is "deaf enough." I am not against them but I'd rather wait to see how she does with other less invasive interventions, signing and therapy before we went there.
 
LeighAnnasMom said:
That's what I thought!

Another ignorant question but what is the difference between language and speech development?

At this point I don't think we are ready for CI. Audiologist doesn't think she is "deaf enough." I am not against them but I'd rather wait to see how she does with other less invasive interventions, signing and therapy before we went there.
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Language is the key to understanding the world, to sharing thoughts with others, to problem solving skills, to be able to collaborate with others, and to achieve critical thinking skills which can lead to creativity. Language enables people to have access to the world whether it is through reading, writing, socializing, the media, or connecting with others.

Speech development is just the ability to pronounce certain sounds of a spoken language. It is not language itself just like hand shapes and movements of sign language aren't languages themselves.
 
LeighAnnasMom said:
That's what I thought!

Another ignorant question but what is the difference between language and speech development?
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One of the things I would suggest starting working on is pre-reading skills - you might thinks she's "too young" but she's not.

Pre-reading skills are things like using pictures that also show the name of the item and helping make the connection between the picture, the word and whatever she hears when you say that word.

Also just spending a LOT of time reading books to her (where she can see the words ... have your finger trace under the words as you are saying them).


Language is communication and understanding (speech, signed, written etc) - speech development is just a tiny part of what language development is. If you provide your child with an accessible language rich environment that is really the most important thing.

A perfect example is right here on AllDeaf - we have plenty of members who clearly have good language skills (reading and writing) but may not speak (orally) at all. Likewise you will find people in life who may be highly articulate people (orally) but who are functionally illiterate. Speech is a "branch" of the language tree, but far from the whole tree.
 
We just started skype sessions with my son he is almost 8 months old. we live far from any deaf school but im sure if you call one of your choice they would do skype sessions . Also they should send you tons of info. aswell. Right now its very basic stuff. She is little so just start signing right away, reading age appropriate books, flashcards are great with pictures and words, also do the sign to make a connection. reading so so important. Talk about everything your doing whether if your at home or running errands. But signing is really key at this point at least it was for my 2 kids keep it going. my son signs milk (that was his first sign) now its, more and mommy at almost 8 months. we go over his basic baby sign book everyday. plus doing it over and over adding it in your daily routine she will catch on. but most important just play and enjoy your beautiful baby. My oldest has a loss similar to your daughters moderate/severe-profound bilateral sensorineural loss . your daughter will be just fine with hearing aids mine is turning 7 soon and she is a chatter box! she reads and spells better than most of her hearing peers at school plus she knows sign and speaks very well. best wishes to you.
 
YAY for you for wanting to incorporate Signing! I think right now its a matter of lack of dhh resources right?
HOH kids generally do not need super intense oral instruction. We are the kids who didn't get aided until we were toddlers...and sometimes even until kindergarten/first grade.
Meaning we didn't need say the intensity of an auditory-verbal program or even the John Tracy oral course.
I wonder if you could contact your home state's School for the Deaf, and see if they could have Skype sessions, teaching your family Sign as a supplement, and seeing if there might be any areas in oral speech that they could work on.
 
You mention "military family going to be overseas up to 2 years" so would their be any connections through whatever branch of the military your husband is part of?
 
that's where I am right now except my right ear dropped a little bit in the 8000 hertz range! anyways welcome to AD and I've been wearing hearing aids since I was 6 months old
 
shel90 said:
Language is the key to understanding the world, to sharing thoughts with others, to problem solving skills, to be able to collaborate with others, and to achieve critical thinking skills which can lead to creativity. Language enables people to have access to the world whether it is through reading, writing, socializing, the media, or connecting with others.

Speech development is just the ability to pronounce certain sounds of a spoken language. It is not language itself just like hand shapes and movements of sign language aren't languages themselves.
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And as I said, a hearing parent really doesn't have to worry too much about an audilogically HOH kid's speech. Most audilogically HOH kids can develop speech abilty very easily even without intense instruction (the way oral deaf kids might) They probably won't have perfect/like hearing speech....Even HOH kids have deaf accents and or have to be in speech to learn how to make sounds etc.......it's just that they don't have to work as hard as deafer kids to learn spoken language.
The area to be concerned about is sign......get her exposed, and learn ASL...that would be awesome!
Contact your home state's School for the Deaf....Maybe they can Skype with you so your daughter can learn ASL....that way when you guys return to the states she can attend a dhh preschool and get intense dhh services!!!! (and Ive noticed there are a lot of HOH kids getting ASL and going to deaf schools /programs now. Even at schools for the deaf a lot of kids are oral, or they get oral transfers. )
 
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