Concerned mom looking for support...

LeighAnnasMom said:
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 :)
Click to expand...

First, your daughter is very lucky to have such a wonderful family!
Secondly, try to find a good audiologist near you in Egypt. There should be many who speak English fluently. They will help keep your daughter's hearing aids and earmolds up to date which will reduce annoying feedback issues and make wearing hearing aids much easier for your whole family.

You say your daughter has moderately severe hearing loss. That sounds bad but it means she has a significant amount of residual hearing. Check out page 15 of this (http://www.handsandvoices.org/pdf/mainst_cal.pdf). It describes the long term implications of various degrees of hearing loss.

It is awesome that you want to incorporate sign into your daughter's language development!
I get annoyed that hearing babies are allowed to sign "baby sign" but hard of hearing or deaf babies are forbidden from signing (which means they are forbidden from communicating).
Your daughter has a loving family, an informed mother, apporptiate hearing aids (im assuming) and good language examples. She has every opportunity to develop spoken AND sign language fluency.
Using both speech and sign can be beneficial to your daughter and your family but everybody has to be committed to learning ASL.
Language immersion, whatever language it is, is paramount.
 
LeighAnnasMom said:
...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?
Click to expand...

:laugh2: I wouldn't worry about an accent. As others have said, I'd focus on developing fluency in a language or languages enabling her to communicate effectively with those around her. Fluency doesn't equal accuracy, esp. at 3YO, so don't worry about mispronunciations or wonky handshapes. At 3, children mispronounce/sign incorrectly lots of words. I know a whole lot of capable, smart adults who do, as well. I won't even begin to list the many words I've mispronounced in public in recent years.

But that's not to say to ignore her speech production. If there's a pattern of mispronunciation, it may inform you that there are sounds/frequencies she doesn't hear, and perhaps your audi can adjust her HAs accordingly to try to bring in those sounds.
 
I just wanted to give a sincere thank you to every single person that responded to my post. I have been so overwhelmed and frustrated since day one of her diagnoses. I don't have a lot of exposure to the deaf/HOH community and I get a lot of conflicting information. I haven't gotten a lot of practical advice until my post. It is amazing how ignorant the medical community is about hearing loss. I had a pediatrician "mouth" words to her so that she could lipread? It was really comical. I can honestly say that if not for the 3 ABR results I would have never guessed she had a hearing loss based on her current interactions. I apologize in advance if it takes me a while to respond. I barely have enough time to keep Facebook up to date but I commit to it because we live so far away. The advice here is priceless and I will make every attempt to check in often. This site has been a real blessing to me...
 
Thank you Csign!!!!! This was exactly what I was looking for! We are in the military but there isn't a lot of military here even if there were. The military has so many underused programs due to continuity when someone PCSs. They try to maintain a knowledge base but if the person coming into the job doesn't read it, its pointless.
 
I'm surprised that military members are allowed accompanied tours in that region. Not only is safety a factor but access to services is limited since there are no American military bases there. I guess you are using the Embassy support facilities?
 
Reba said:
I'm surprised that military members are allowed accompanied tours in that region. Not only is safety a factor but access to services is limited since there are no American military bases there. I guess you are using the Embassy support facilities?
Click to expand...

We are using the embassy facilities as well as what is available on the economy. Everyone here does. There are lots of families here. My daughters audiologist here trained at Johns Hopkins (of course Tricare verified her credentials).

We received orders when I was 7 months pregnant and physically PCS the day after we got her diagnosis when she was a month. At that point are home had been rented, car shipped and flight booked. I postponed my departure to make sure that she got fitted for hearing aids and only decided to come after early intervention said she was too young and they only offer support services for parents. Having witness the strain of a deployment on my older daughter who is 3, during a recent deployment. I decided that I would teach her sign and anything helpful because we would only be here 2 years. We've been here about 3 months I may come back early to start speech therapy.
 
I decided that I would teach her sign and anything helpful because we would only be here 2 years. We've been here about 3 months I may come back early to start speech therapy
Click to expand...
It must be exciting but scary to be a witness to history seeing what's going on in Egypt.
It's hard to say whether or not returning stateside would be a good idea.
On one hand, she may not need super intense intervention (the way a deafer kid does) But on the other hand, she COULD benefit strongly from specific interventions. (that do not seem to be strongly available in Egypt)
 
deafdyke said:
It must be exciting but scary to be a witness to history seeing what's going on in Egypt.
It's hard to say whether or not returning stateside would be a good idea.
On one hand, she may not need super intense intervention (the way a deafer kid does) But on the other hand, she COULD benefit strongly from specific interventions. (that do not seem to be strongly available in Egypt)
Click to expand...

It's funny you say that. We don't really see a lot where we live. We are only aware of it through email and social media. The majority of what's going on happens in a one block radius downtown. It just so happens the US embassy is 2 blocks away. The embassy is usually only affected due to proximity to the main square downtown. If you didn't have to go downtown you wouldn't know anything is happening. The majority of the time the protests/clashes have nothing to do with the US. People are very unhappy with local government.

I struggle with the decision on returning. It would be hard on our family and especially hard on my oldest to be away from Daddy. It's what I agreed to when my hubby and I got married so we make it work. What specific interventions are you referring to?
 
After re-reading my posts I think I may have been a little confusing. I have 2 daughters. My oldest daughter (3 years old) can hear. My youngest (6 months) has bilateral moderate to moderately severe hearing loss.
 
LeighAnnasMom said:
It's funny you say that. We don't really see a lot where we live. We are only aware of it through email and social media. The majority of what's going on happens in a one block radius downtown. It just so happens the US embassy is 2 blocks away. The embassy is usually only affected due to proximity to the main square downtown. If you didn't have to go downtown you wouldn't know anything is happening. The majority of the time the protests/clashes have nothing to do with the US. People are very unhappy with local government.

I struggle with the decision on returning. It would be hard on our family and especially hard on my oldest to be away from Daddy. It's what I agreed to when my hubby and I got married so we make it work. What specific interventions are you referring to?
Click to expand...

So Tahir Square is two blocks away? COOL!!!! I am our resident protester (even got to parcipate in an Occupy Wall St action last year!) which is why I mentioned it. It's good that there's not a lot of anti American sentiment where you are.....
I'm wondering.......is there any way at all you could get an evalution somehow? I think that is what you need to decide whether or not to come back stateside. If she's doing OK speechwise, (and a lot of HOH kids do decently speechwise) I think she could do decently with being "followed" with speech and ASL sessions via Skype. Don't go overboard....it's the quality of the speech sessions, not the quanity. Meaning turning into one of those mothers who turns everything into a conscious language learning experience is not going to make her have perfect spoken language. I think right now she needs to be monitored for delays. She might not have them until she is a toddler...HOH kids still have a lot of residual hearing and speech to work with, and they can pick up things just like that. It's no wonder a lot of kids weren't identified until we were toddlers (even some severe and profound kids weren't identified until we were toddlers you know!)......They're not starting from scratch in other words.
The interventions would be in person speech therapy and learning ASL (maybe even with a Deaf mentor)
 
Tahir square is about 2 blocks from the embassy. We live about 30 mins away. My husband works at the airport. We only go to the embassy for administrative purposes so we are rarely affected by the protests.

We are only assigned here for 2 years. As of today we have about 18 months left. We have an evaluation scheduled for January. What's confusing for me is looking for speech delays in a child this young.
 
As of today we have about 18 months left. We have an evaluation scheduled for January. What's confusing for me is looking for speech delays in a child this young.
Click to expand...
*nods* You're right.Heck, I'm amazed they can find the delays when they are toddlers, since even hearing toddlers have funky speech. My hearing friends all have trouble understanding their hearing toddlers.
 
Back
Top