mom of a 6 year old and 7 week old both with hearing aids

suzanne

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I have a daughter 6yr. who has a mod/severe loss in one ear and severe/profound in the other. My son who is 7 weeks old has severe/profound in both ears. sensorineural loss .......he will be fitted with his aids in 5 days. They say he qualifies for a CI. I would like to see him succeed with just aids. Is that possible with his severity? My daughter has great speech but at times misses the small key words that form a complete sentence. her reading skills are great with time and more reading her sentences are becoming more complete. But with him Im worried is anyone able to give advice ? I did some sign with my daughter and she still uses it today. of course he will be taught sign aswell but I as a parent need to learn ASL completely for us to communicate with him when he has no aids in. Anyone with this severity or knows someone with this severity please feel fre to write. thank you
 
I have a daughter 6yr. who has a mod/severe loss in one ear and severe/profound in the other. My son who is 7 weeks old has severe/profound in both ears. sensorineural loss .......he will be fitted with his aids in 5 days. They say he qualifies for a CI. I would like to see him succeed with just aids. Is that possible with his severity? My daughter has great speech but at times misses the small key words that form a complete sentence. her reading skills are great with time and more reading her sentences are becoming more complete. But with him Im worried is anyone able to give advice ? I did some sign with my daughter and she still uses it today. of course he will be taught sign aswell but I as a parent need to learn ASL completely for us to communicate with him when he has no aids in. Anyone with this severity or knows someone with this severity please feel fre to write. thank you


First, :welcome:


As for your question above, only a medical professional can answer that. The CI vs hearing aid issue is a very controversial & sensitive topic. As a parent, you need to decide what is best for your child.

I have CI's, wore hearing aids most of my life, and enjoy the CI's as well as being deaf when I want to.

It is proven that the earlier the CI implantation, the better the child's brain maps the sounds. I know of a few teenagers that were born profoundly deaf and got CI's at very young ages, and they are doing much better than I am.

The medical community will push you to get CI's, and there are some deaf folks that are totally against it. Go with what your heart tells you.

As for speech issues....when I lost my hearing at 4, my speech got bad, so I had speech therapy for many years and speak well. Most schools offer weekly speech therapy for students.
 
Hi, I do know that severe/profound kids can be aided into the speech frequncies. It's too soon to tell if he can benifit from HA or not yet.
But there are still a lot of HOH with HA but has deaf loss kids out there. Every kid is different.
Contact your state's School for the Deaf. They can give you good information.
American Society for Deaf Children - Home
and
Hands & Voices
 
Thanks for the welcome!!

We just got his aids yesterday!! he lit up when they put them in. well first he was blank faced then smiled them cried when everyone started talking. But he loves them smles everytime they get turned on. loves my voice which warms any parents heart. I have always read to him so he is into books already. he watches my fingers as I point to each word. Introduced sign to him already since the beginning. Im just so excited that he can hear something now. He does startle to dogs bark but not the vaccumm. His eyes get big but did not seem jumpy when i turned it on.

My daughter has recieved speech services though the school since 1yrs. also a DHH teacher. My son will aswell. Besides speech through the chool we see an outside SLP that really does a great job she gives homework and mouth movements to practice. I reallylike her.

I am connected to MN HAnd and Voices. They are amazing. we have attended events and a parents guide has been here already to visit. I have been connected to them since my daughter was born 6 years ago. They are also getting me set up with the deaf mentor program I believe that is what its called. Send someone here to help us learn ASL completely. my daughter love sign till about 3-4 years old she would always tell me MOM just talk please. I would talk and sign at the same time but she felt like oevrwhelmed by it cause she was so focused on talking. But she uses sign sometimes and doesnt relize it : ) Now she is getting back into it again but now since her brother is here she will need to learn for him.As we all need too.

I have been reading on CI but Im scared for such a surgery. But when they work the outcome is outstanding!! but that is if they work and do not fail or get infected. Also seizures? how scarey! I prefer an aid by far but if he has no benefit with these I would have to consider. The look on his face when he could hear sound with the aids it was priceless. I cant have him go without. But i got awhile to think and who knows he can benefit from then time will tell!!!!! Just happy he has them :)
his aids are phonak naida S lll SP. The same as his sisters almost but hers as an intergraded FM for school .

i Have a list of deaf hoh schools in MN but they are so far away from us like hour and a half and farther. i hope both of my kids do well in public schools. so far so good with my daughter but she is only in kindergarten going to be in first grade. things could change.
 
Thanks for the welcome!!

We just got his aids yesterday!! he lit up when they put them in. well first he was blank faced then smiled them cried when everyone started talking. But he loves them smles everytime they get turned on. loves my voice which warms any parents heart.

Glad it worked out for him!!! :cheers:
 
First of all, it's AWESOME that he's responding well to being aided at first. That's a good sign! I'm not an expert.....but there are still kids who can and do and have developed speech skills despite having deaf losses!

I
am connected to MN HAnd and Voices. They are amazing. we have attended events and a parents guide has been here already to visit. I have been connected to them since my daughter was born 6 years ago. They are also getting me set up with the deaf mentor program I believe that is what its called. Send someone here to help us learn ASL completely. my daughter love sign till about 3-4 years old she would always tell me MOM just talk please. I would talk and sign at the same time but she felt like oevrwhelmed by it cause she was so focused on talking. But she uses sign sometimes and doesnt relize it : ) Now she is getting back into it again but now since her brother is here she will need to learn for him.As we all need too.

I have been reading on CI but Im scared for such a surgery. But when they work the outcome is outstanding!! but that is if they work and do not fail or get infected. Also seizures? how scarey! I prefer an aid by far but if he has no benefit with these I would have to consider. The look on his face when he could hear sound with the aids it was priceless. I cant have him go without. But i got awhile to think and who knows he can benefit from then time will tell!!!!! Just happy he has them
his aids are phonak naida S lll SP. The same as his sisters almost but hers as an intergraded FM for school .

i Have a list of deaf hoh schools in MN but they are so far away from us like hour and a half and farther. i hope both of my kids do well in public schools. so far so good with my daughter but she is only in kindergarten going to be in first grade. things could change.
Yay for being hooked up with MN Hands and Voices already!!!! It's AWESOME that you signed with your daughter, and are going to pick it up again. I think most likely it's a combo of her thinking " I can hear with hearing aids!" and the fact that most likely not a lot of people around her sign. One thing you could do to make the "lightbulb" go on as to using ASL, is make it seem REALLY cool.....like a secret language, and a secret superpower that she can use when her hearing aids are off or in the shop or there are difficult listneing situtions. Like be very very positive about the fact that she has TWO languages, and two modes of communication. She prolly thinks "Im the only one who signs and everyone else speaks." (b/c she's prolly the only dhh kid in her classroom)
Do you have a list of dhh PROGRAMS in MN? I thought that MN has regional dhh programs...that may be a really good option. They have the advantage of a dhh "school/ formal sizable program housed at a mainstream school. It's also a plus b/c the staff at those schools are very experianced with dhh kids ...so the dhh kids get the proper education and services and accomodnations...plus the speech therapists affliated with the programs are experianced with dhh kids...
 
oh and it's good that your daughter is doing well......That's a big part of why Clarke and the other auditory oral private schools have pretty much shut down. Kids do decently early on, but then later on things can and do get harder.
Did you know back in the old days, the oral and signing schools would always get a mess of transfers around fourth grade/middle school?
Nobody here is suggesting sending little kids off to the dorms......but I do think that parents should be aware that educational placement needs can and do change, especially around middle and high school.....(especially with social emotional issues that crop up for even the type of AG Bell student who wins the AG Bell scholarship to a very highly selective school)
There's always summer camps and things like that.....in fact, Aspen Camp School for the Deaf and HOH offers a Family Camp where families can learn ASL!
Family Connections Camp | Aspen Camp of the Deaf and Hard of Hearing
Is there a chance you guys could move? I know MN School is one of the ones that is more academic. Plus the early grades at deaf schools are AWESOME!
 
I have a daughter 6yr. who has a mod/severe loss in one ear and severe/profound in the other. My son who is 7 weeks old has severe/profound in both ears. sensorineural loss .......he will be fitted with his aids in 5 days. They say he qualifies for a CI. I would like to see him succeed with just aids. Is that possible with his severity? My daughter has great speech but at times misses the small key words that form a complete sentence. her reading skills are great with time and more reading her sentences are becoming more complete. But with him Im worried is anyone able to give advice ? I did some sign with my daughter and she still uses it today. of course he will be taught sign aswell but I as a parent need to learn ASL completely for us to communicate with him when he has no aids in. Anyone with this severity or knows someone with this severity please feel fre to write. thank you

I am 30 odd years old I have been profoundly deaf since birth, I had very very little useable hearing, probably just enough to hear loud bangs, no speech whatsover. I was diagnosed late, at 2 years old. My mum knew I was deaf from day one, there was fire alarm at the hospital where I was born I was the only newborn who didn't response to it. Doctors labelled my mum an over anxious first time mother. She was determined that i wouldn't miss out the vital language in the first few years, she learnt to sign then taught me, read to me face to face/showing picture and mouthing words so i copy her so on so on, at 2 years old before, i got my first aids I could lipread few things, knew many signs.. I already had a language. I went mainstream primary school, never had pull out sessions, all my speech therapy was done after school so I had an education on par with my hearing peers. My mother used to buy me a new book every week and read to me until i became independant on reading, it becomes every few days until she says enough is enough as I was needing a fresh book to read every day (Pre 400 page books!)! ALL This was because of my mother's LOVE and DETERMINATION that I never missed out! Its great you got some assistance/therapy under your belt because of your daughter, your son won't miss out! He is having the best start of life thanks to you. :)

I now have CI (4 years) and it beats the hearing aids hands down. It gave me the frequencies I never had with the hearing aids and I am still learning to hear and recongise new sounds, I can now speak/listen on phone with my family (they live in other country).
 
On the other hand.....right now it doesn't look like her son is a "right off the bat
unaidable canidate for CI....he MAY be HOH with hearing aids....still a little too early to see. I know people with severe-profound and even profound losses who are HOH with hearing aids. I definitly think CIs rock, but I do think that when a kid responds with HAs, you gotta be very careful in assuming that CI is always better then HA.
 
This is great thank you all for your input!!! The CI is a great thing I was amazed of the clear speech a profoundly deaf child/adult can have! Some of the kids speak more clear than my own daughter who doesnt qualify for a CI. I just hope my son can develop clear understandable speech with just aids. The surgery of a CI and side affects the failure that could happen just scares me.

But he got aids at 7 weeks old! So I know that does help! My daughter was almost 5 months old when she got hers. She reads very well and clear aswell. Just when she talks on her own and gets excited her words get jumbled. With books I know that will get better we do read back and fourth to each other so that will help. we love books since day one i have made books number one. it should be with all kids anyway. and we are getting setup with ASL through the school. plus with mnhands and voices.

Our family can not move sadly! We are where we are for life. I have a great support system and team going. Plus we are in the house we bought unless we can sell it. That will be a problem plus a job for their dad is another. I will stay home I have since my daughter was born. No job will pay enough to make me go back. They both need me here and full attention 24-7. Someone has to make sure things get done appts. are met and books are read!! :) Plus deaf hoh schools cost $$$ right? either way we cant move and I cant drive 2 hours there and 2 hours back for a school. If they have a hard time in school...due to whatever it maybe.....the only thing would be other kids and their negative attitudes. i will home school or find another option for education. My children wont be bullied..i wont let me stay in that if it ever occurs.

She is the only HOH kid in her class. There is a boy with 2 implants in teh school but he is a 2nd grader. We have met him through a winter camp we attended for deaf/hoh kids plus another girl with aids in our town but she is also older than my daughter. I think by 3-4 years older. I do go to events through MNhands and voices just so my daughter know and my son will too that they are not the only ones. She went to her first event when she was 2-3 and I will keep it going for them both. I dont want to hear them say why am i the only one. so by doing this and taking them exposure to others kids they will never have to ask. plus they do have each other for every day life aswell.

when i got pregnant for the second time I knew 25% chance this one could be HOH/deaf. In a way i had a 50/50 feeling on what i was hoping. of course a full hearing child would be easy....but then again a deaf/hoh child would be more work but at least my daughter wouldnt feel like she was the only one in her family with aids. but it was still hard to take to know that it happend again ...all in all he is healthy happy cute lil man thats all i can ask for. and my daughter lit up when she seen him for the first time with his aids in. that was great to see. Im lucky. I got a head start on this with him so im ready to do whatever it takes! Parents are the number one teacher. it makes me happy to hear people tell me what a great job im doing. it helps! But as a mom it comes naturally. Im just curious to see what our first speech session will be like! He starts in June he will be 2 months old!
 
be a rebel , go to the Deaf way , your kid will thank you for giving them a chance to a real life, not a life as a 'hoh playing catch up'
 
like why then, is it, on some movies or TV series (think Marlene matlin) have a Deaf character who knows and are a well rounded personality with zest, and signs!! i mean Signs and no bodd doubts her ability...
take a moment , sit back and think...
ofc its never rose for her but you can see she overcame some (if not all) cultural and 'perceptional' boundaries in the hearing world, which is by contrast to doing the CI way, relying on hearing experts who have nothin to care for Deaf peolpe but firmly fixated on one particular thing - Hearing- and speech that go along with it as the mode of communication...speech is hard work for that individual it drains , lip reading is just as bad but signing is like already a given for Deaf pepole, we use eyes, and we can still communicate with hearing, just not with speech 'as a preferred mode', we are SEEN as Deaf not as some 'wanna be hearing'.

you really need to ask yourself this
do you want your kid to 'overcome themselves in speech and with dubious technology'? or your kid just be.

another way of looking...in classrooms, kids talks to each other, and in deaf clubs, they dot associate each other 'with deafness' they associate with each as who they are, whereas a deaf boy or girl in the hearing classroom , other kids will ALWAYS refers them as 'oh the deaf boy with the cochlear implant' or the girl with nice speech, but she speaks bit slow... i cant explain it all but you see...it Never feels natural and it never real only thing is real is that feeling, "im different" and you know what? its horrible , for each and every moment no matter how much the teachers says, or your mum and dad says or how other people says 'you speak so well - i dont think you as a deaf person' etc etc the last bit its Really an insult, its not a compliment as it might first appears, it really suggests that being deaf is something undsirable, unwanted or something that belongs to the 'under class'..its just creepy...and quite confusing for us Deafs, when we ere kids, its a horrible way to have a indirect instruction from a seemingly 'normal conversation with that veiled insult twisted into a so called compliement' telling us, it better to pretend we are hearing, than it is to say 'im deaf and im proud' a truly dsstructive pattern is planted and it lasts for Lllllloooooooooooooooonnnnngggggg time and there will be hell...

DONT do it...

you want honesty? in and from every direction around your child? and yourself?

Let it be, let is snow, let it snow...let your child BE Deaf, and you will find alot of parrents and peoples who are in the Deaf community who will give you untold strengths. Doctors wont , they are cold, technical, off side, off site, and controlling. its just revolting.
so there a different slant, but you needed to read my post to get another set of thoughts to ponder on.
 
Plus deaf hoh schools cost $$$ right? either way we cant move and I cant drive 2 hours there and 2 hours back for a school. If they have a hard time in school...due to whatever it maybe.....the only thing would be other kids and their negative attitudes. i will home school or find another option for education. My children wont be bullied..i wont let me stay in that if it ever occurs.

Nope, they're free. The school district pays the tution to the Deaf Schools....Are you talking about Minnisota Academy and Metro Deaf School?
AND I do think actually if you got them placed at the deaf school, the school district is responsible for transportation. You wouldn't have to drive there and back. Ask Minn Hands and Voices about the regional dhh programs....that might be a good compromise. These are formal sizable programs housed at a hearing school, and dhh kids from all over attend. I have a friend in Minn....if you want I can try to find out more info for you. Surely there's a regional dhh program near you!
 
Even if there isn't a dhh program near you guys, I think you guys could have the kids involved in deaf summer camps and things. My personal opinon...I think that the option of a dhh school/program should ALWAYS be an option/ on the table, especially for middle and high school. Let the kids know that there are deaf schools/dhh programs, and that the option to attend one is available to them. I do think that little kids need to stay at home with their parents, and attend day programs/regional dhh programs. I do however think that the dorms can and should be an option for older kids (like middle school and up) Keep an open mind as to placement and see what is out there.
 
we go to the winter camp for deaf/hoh that is located close ....and they also have a summer camp but she needs to be a first grader. I went with to the winter camp cause she was to little to go alone. I didnt want her to go alone anyway. It was fun she had a blast. I will contact my parent guide and ask she has twins who are HOH but her girls are public schooled......they seem to be doing great they are 10. But I will still need more info on deaf HOH schools just so i know i have my options ! thanks :) I will be looking into that!
 
But I will still need more info on deaf HOH schools just so i know i have my options ! thanks I will be looking into that!
Excellent! Crossing my fingers that there's a regional dhh program/magnet school in your area that you're just missing..... Or maybe a good idea might be to start one? That would be awesome...Like it would consolidate services and kids at one site.....they'd have access to on staff TODs and speech therapists who are familiar with dhh kids. One major problem with "solotaire" mainstreaming is that unless a dhh kid does really well with the traditional minimal accomondations approach (ie front row seating, FM, speech and MAYBE a TOD) they may get lumped in with the "resource room"/special ed kids.
 
Well so far she is doing well enough but it is only kindergarten.....she didnt quailfy for extra services this summer Like (ESY) exstended school year. They placed her in a level 2 reading class which there are 4 levels ...4 being the lowest of course. I was pleased to see her reading skills are great. Its math that she see's her special ED teacher for. Also she goes to speech and her DHH teacher of course. I tried to get her in to ESY just to be sure but they tested her and still she didnt quailfy. Its only for kids who are really struggling or could be held back. Its a good thing she is doing so well...as of now!!!

You know I really thought to myself I should start a school for kids that are Deaf or HOH in the area. The closest one is in the city...like hour to two plus away. That is so frustrating for us parents that choose to not live in the city we dont get a lot of services we should be getting. I guess the schooling part is what we are missing out on which is huge!!! What if our children dont like public school? what is left besides home schooling? I cant send her that far away to a Deaf HOH school wthout me close by....i would freak out! That is me just beingcrazy and over protective. What is a TOD? :) sorry!! I am not familar with that term? i think i know but not sure.

I wonder how you would go about getting a school started for kids that are Deaf or hoh .....Its such a great idea and it has crossed my mind for 6 years on and off since my daughter was born and I learned they didnt have a school here for them in the surrounding areas of where we live.
 
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