Any parents who have children with hearing loss

[2BoysandaDog]

I'm new to this forum but more of a "veteran" Mom! Our son is almost 13 and was diagnosed with severe hearing loss at age 1 and it quickly progressed to profound. He got his right cochlear implant at 18 months and his left at 2.5 years old. Back then they wouldn't do both at once and made you wait until the at least 1 yo mark. I vividly remember the feelings you're all describing of fearing for the future, grieving over the present, and worrying about EVERYTHING.

I wish someone wiser had told me then that it will be okay and this is not the horrible diagnosis that you think it is right now!!! Yes, the journey has been very hard at times but now that we've been at it for awhile I can truly say that finding out my son is Deaf doesn't even make the Top Ten List of the "Hardest Things You'll Deal with as a Parent." Really!! Trust me on this! And, the added bonus: we have met some of the most amazing people from the medical world to other Deaf kids; watched our son's heariing friends and classmates respond to his deafness with incredible maturity, caring, and kindness; and learned so many super cool things (sign language for starters!!). We never would have had any of these experiences if he had not been Deaf and looking back now, I can say I'm thankful for the majority of these last 13 years!

So, to the new Moms (and Dads) out there dealing with a new diagnosis of hearing loss: we're thinking of you and want you to know that it does get easier and you will make it through!! Just hang in there and take it one day at a time.

 

[mummyruston]

Long time no speak ladies. How are you all? Especially your little ones?

 

[Mrs. AJ]

Hi! I am looking forward to the new year I have decided to go back to school to pursue a master's in speech therapy to work with hard of hearing kids - inspired by my dd of course! I need some undergraduate prereqs before I can apply for the masters progrm, so I start that in January.
My daughter is doing great. Progressing awesome though it always seems to ebb and flow. We have her IEP eval and meeting coming up in January so anxious but also excited for that.
How are you?

 

[SoBlessedMama]

Wow, Mrs. AJ, that is so cool!!! What a blessing you'll be to those kids, having the first hand knowledge and experience that you do. Congrats on that decision!

That's great your little girl is doing so well! Our boys are doing great, too. : )

Our 5 year old just finished his first semester of kindergarten. He loves it, and is doing amazingly! Our one year old is gaining new vocabulary all the time, which is reassuring that he is hearing well with his aids. He says almost 10 words, and signs several more.

The technology in those little hearing aids amazes me every day. : ) Both boys have a checkup in January, and the baby will have his one-year eval with the speech therapist, so hopefully those reaffirm what we feel like we are seeing at home. : )

I hope you're all doing well!

 

[Kitteh_Kat]

Hi ladies!

That's awesome, Mrs. AJ! Good luck

Glad to hear the little ones are doing well with everything!

Hope the appointments go smoothly, SoBlessedMama!

DD has been on strike with wearing her BAHA, so we've back off on making her wear it. She has also figured out how to remove the little battery from it, and I'm paranoid that she might swallow it. Despite that she's learning new words and still seems to hear fine without it. She has another hearing check-up and BAHA evaluation in February, so we'll re-assess then. We just did her 6 month IFSP evaluation and she had met 2 out of the 3 goals!

She's also been accepted into the preschool program with our school system, and starts in August! Normally they have to wait until 4, but she gets to go at 3 to get an early start with her education.

 

[SoBlessedMama]

Hi ladies--I hope you're all doing well! I have a quick question--our 14 month old has a speech evaluation next Friday. I FEEL like he's on track, and he was at his last eval. But do any of you have any thoughts?

He says mama, dada, nana, bye, hi, Denny (brother's name--sounds like 'Nenny') and Davis (his name--sounds like 'Dadis'.) He also signs milk, drink, more, no, hurt, and attempts 'I love you'. And he is getting pretty good at mimicking sounds and trying to repeat what we say. (He also jabbers nonstop lol.) This seems pretty typical, and I think if he didn't have the hearing aids, I wouldn't even be worried. Does this sound on track to you ladies? Our oldest is almost 6, so it has been a long time and I can't remember what he was able to do at this point lol.

I'd love any thoughts about whether this seems typical for his age. : ) My big concern (of course) is that I want to know he is hearing well so that his speech develops normally. Thanks in advance for any input. : )

 

[Mrs. AJ]

Sounds pretty spot on to me (though my son with typical hearing is 4 so it's been a little while here, too).

 

[mummyruston]

Apologies for the radio silence! Our appts have ramped up significantly for CI assessment, and investigation into the cause, plus AVT and our ToD!! All good though. My son is just shy of 6m old, laughing, giggling, trying to crawl, almost waving and more importantly recognising sounds with HAs. He certainly responds more to my OHs voice and deeper sounds like knocking, barking, coughing etc. It sounds like all of you are doing so well too! And so blessed mama id say those words for your littlest one sounds about right?

 

[SoBlessedMama]

Great update, Mummy!! It sounds like your guy is doing fabulously! : )

 

[Mrs. AJ]

That's awesome you're getting such an early start with everything. We didnot even get my daughter's diagnosis until 6 months!
We have her screening for her IEP tomorrow with the school district. Should just be routine, actual IEP meetung isn't until end of feb

 

[CrazyMumma]

Eep sorry for going awol!

Little Mr is almost 4 months old now. Confirmed severe conductive hearing loss on the right side, left side normal. Unsure of why his ear drum isn't moving - best case it's simply fluid behind and grommets will fox, however as his outer ear is malformed there's a high chance the inner ear hasn't formed correctly either, in which case the loss is permanent and he will need a bone grafted hearing aid.

Should find out in the next month or so when we see the ENT if it's fluid. Because the ear is so small they couldn't see properly when he was tiny so having to wait til the tubes are big enough for them to see down.

He does seem to respond to some sounds now, but then not others? Like we set off the fire alarm (cooking and I don't get along!) And he didn't blink, but mis 5 slammed her door the other day and he startled...he just likes to keep us guessing I think!

I hope all your wee ones are doing good. Kitteh- bribery ? Haha im dreading those fights!

 

[SoBlessedMama]

CrazyM, I hope your ENT appointment goes well! It is definitely hard when they're so small and you're not sure what is a real response and what isn't.

We took our youngest for his big eval on Friday (both speech and audiology.) It was GREAT!!!! He tested in the average range for speech, which we were thrilled about. But also, this was the first time we got to test his hearing WITH the aids in. Without the hearing aids, his threshold is 70 decibels (severe-profound...
which we found out at four months old.) Friday we found out that this hearing has not changed at all (yay!!!), and that with the hearing aids, his threshold is 15-20 decibels!!!!!! Zero-15 decibels is categorized as normal hearing, so this is incredible. I can't believe (and I'm so thankful!!!!) that there are technology and doctors who can make such amazing gains for him. To know that he IS hearing what he should, and he IS learning and saying what he should is an incredible blessing. : )

 

[Mrs. AJ]

That is awesome BlessedMama!

 

[mummyruston]

Good news SoBlessed!!!

 

[mummyruston]

CrazyMumma

My boy with HAs tends to hear base sounds very well eg door slams, knocking, coughing. Deep voices etc - yet doesn't hear Christmas bells etc. I was told that was kind of normal - so maybe it's similar for your little guy?

 

[deafgal01]

I wonder if it's a certain level of sounds that your boy is able to pick up. Like if it's lower sounds, he can pick up the vibrations of it somehow, as opposed to the higher pitch ones.

It's hard to explain but two people with same level of hearing loss will not hear the same things. For example, I could possibly hear a motorcycle, while the other person who has my level of hearing loss may detect higher pitch sounds instead of low ones. Just some thoughts to ponder on.

 

[SoBlessedMama]

Interesting, DG! I have a friend who has a daughter who is profoundly deaf, and she swears she can "hear" the hum of electricity. It's neat how different frequencies register differently.

 

[Mrs. AJ]

I have what is called a "cookie bite" loss, so higher and lower tones are normal but I have moderate loss in mid tones (mild in right ear, moderate in left), so yes lots of possibilities.

 

[2lovelyboys]

Hi all, glad all the little ones are doing well, my little man is 7 months he doesn't react with hearing aids set to 90db so hopefully cochlear implants will work for him, I'm also greatful such technology exists!

 

[SoBlessedMama]

2lovely, I hope the CIs work well for your little guy! Is there a timeline for pursuing surgery? (I'm sorry if you've mentioned this and I can't remember!!!)