Any parents who have children with hearing loss

[SoBlessedMama]

I saw a girl in a toy store at the weekend, she was six with two cochlear implants and I stopped her mum to ask a few questions.

The girl wasn't fitted until she was 4.5 as they'd lived overseas until she was and it took 18m to go through the process when she was home.

The girl was speaking clearly, I'd say at the level of a 2y old but I was impressed because she'd only been hearing 18-24m and speaking 18m.

Meeting the little girl was inspiring actually because I thought how incredibly lucky for my son to have been diagnosed at birth, aids fitted at 5w and route to assessment for cochlear at 7w with planned surgery at 12m if required. I thought to myself of this little girl was talking after 18-24m of implants then my son and all of your children who are / have been implanted will be speaking exactly the same as their peers.

Which also brings me to my support worker appointment who has told me about two families locally; one 4yo boy who speaks fluent polish and English who is profoundly deaf with hearing aids only (parents didn't want surgery) and a 13yo boy with cochlear who is surpassing his peers at a local high school.

I do believe that seeing is believing and meeting that little girl in the toy store was a breath of fresh air. I can't wait to meet more families and see for myself how amazing these children are!

Loved every part of this update. : ) That little girl was definitely put in your path to serve as an inspiration and source of hope!!!!

 

[Mrs. AJ]

That's so great you were able to meet that mom and her daughter. I think you'll find you have more and more encounters like that, especially once your LOL gets their hearing aids, and possibly implants.
I just had a mom approach me the other day when she saw my daughter's implants. She has a 20 year old daughter who was implanted at 2.5 who is now a sophomore in college studying speech pathology. She attended the same preschool for deaf children where my daughter goes now.

 

[Kitteh_Kat]

DD had her hearing check-up yesterday and everything is still normal in her good ear. The hospital managed to "lose" her $4500 BAHA for a month, but at least they found it after I called and complained. She has an appointment on the 29th to get it fitted FINALLY!

 

[SoBlessedMama]

Kitteh, that's great news about her good ear! : )

I can't believe the hospital did that--good for you for pushing them to make it right. That's so exciting about her fitting!!! : )

Our little guy outgrew his molds (again) and the feedback has been sqealing like crazy. I'm so glad his new ones finally came in today! It's so funny when I think about how a year ago I knew nothing about hearing aids. Now I know how to clean, check, repair, remove condensation, cut new tubing, reattach molds...it's like a weird skill set I never expected to have lol. I remember the first time I tried to put the baby's hearing aid in and it was so stinking hard, and the first set of tubes I cut and I was terrified of ruining them. Or the first time we removed the molds from the tubing to clean them, and it took twenty minutes to figure out which mold fit which ear lol. And now this is all second nature. : )

 

[deafgal01]

It does become easier the more longer you have been doing it. Eventually he will do it for himself and become independent in that. I don't remember how old I was when I started putting hearing aids on myself. Maybe 7 or 8 when the school staff expected me to do it myself. Before that, mom always helped put them on.

 

[SoBlessedMama]

Thank, DG--that makes me feel better!!! Our five year old doesn't outgrow molds nearly as fast as the little guy (thank goodness!) but he still can't put them in by himself. He has the idea right, but he can't twist it around the right way. It is good to know you were a little older before you could do it by yourself. : )

 

[Kitteh_Kat]

Being a parent definitely comes with more skill sets than expected! Glad his new ones came in so you can get them switched out!

 

[Kitteh_Kat]

DD finally got her softband BAHA today! She looks completely adorable with it... although she still prefers to wear her regular "training" headbands. I had to trick her into thinking she was only wearing the purple one to get the softband on.

I know insurance gets bashed a lot on these forums, but ours paid every penny of the $4600+ cost, so we are grateful to have it!

(It also comes with a wireless microphone that transmits directly into the BAHA, so she can't pretend to not hear us anymore when she doesn't want to listen. )

 

[SoBlessedMama]

YAY!!! Kitteh, that's great, and she looks adorable! : )

 

[mummyruston]

Hi ladies, there are many forums on Facebook too for parents of hearing impaired / parents of cochlear implant users and they're really inspiring.

We met a 15yo boy at the weekend who is profoundly deaf - has Usher Syndrome yet speaks as clearly as anyone. He's a bilateral CI user, attends mainstream school - turned down a leading grammar school for an academy down to the facility and the building and has just been the lead part in a local theatre production!! Blown away! I absolutely wouldn't have known he was deaf.

 

[deafgal01]

Kitteh - your lil girl is darling!

 

[CrazyMumma]

Hi all...

Looks like we will be joining you.

Elijah failed his hearing test in his right ear, which we kind of saw coming as the ear is a bit misshapen and he has a wee skin tag just in front of it. He passed the left ear but it took a long time so I don't think he has full hearing there either. He makes no response at all to sounds.

We have a repeat test tomorrow to find out for sure.

Hubby and I are in shock really. Hubby is profoundly Deaf but was told all his life that there was no genetic link so we did not expect this. Poor hubby feels guilty and I don't know how to make him feel better. On the plus side Hubby is a Teacher of the Deaf and can teach him sign language and work with him from early on, plus he had a lot of contacts in the Deaf community and for different support services.

 

[mummyruston]

Read this today.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

[deafgal01]

Sending you hugs, Crazy. It's not easy to find out when you're not expecting that kind of news but it does sound like you two will be the best parents for this boy that he could ask for.

I love that story - mummy. That is a really clever way of comparing a life with a deaf child.

 

[SoBlessedMama]

Big hugs, CrazyM--but like DG said, you sound so amazingly well equipped as parents for your little guy. It is a lot to absorb...and that's ok. Take the time to absorb it.

MummyR, I love that. If I can stop tearing up, I will read it to my hubby lol.

Our babies are all beautiful, sweet, smart, talented, and gifted. What an amazing blessing to see each of them grow in their own ways. Thank you, ladies--this thread is such a support to me.

 

[mummyruston]

It's hard to find out your child has an impairment / ailment / condition / disability and no words, books etc can ease that initial "loss" - I should know as I'm still there with my 11 wk old boy but the more I accept and explore and meet others the better I feel. This is a great thread and one fscebook there are many forums abd closed groups to join. Seeing videos of other young children, teenagers and adults who are doing significant things with their lives albeit hard of hearing / Deaf etc and it's a real inspiration.

 

[Mrs. AJ]

Hey all, wanted to share something I wrote recently (this past week!) for a writing class that is about my daughter Allison. It is fitting today, as today is the anniversary of when we learned of her hearing loss (in spoilers because it is long, and I think the formatting may be funky:

Spoiler

Tiny blue and pink rain boots. I was lucky to get an hour alone with these puppies

because given the choice my daughter will pick them over any other footwear, regardless of the

weather or activity. My daughter Allison’s rain boots.

October 1, 2013.

No, not Allison’s birthday, but a date etched in my memory just as deeply. The day we

heard the words we’d been dreading for months – your daughter is deaf. I’ve only seen my

husband cry three times and this was one of them. Suddenly the future we’d imagined for our

daughter crumbled. The future was now uncertain and we had to take everything day by day -

and boy were those days full. Doctor’s appointments. Audiology appointments. Geneticists.

Speech therapists. State case workers. Tests. And more tests.

The day before her first birthday Allison had surgery to receive bilateral cochlear

implants. Handing over your precious bundle to a surgical team takes a leap of faith and I was an

utter mess during those hours. Then, just days after her surgery she developed a life threatening

staph infection in her right eye and was hospitalized again. I had never known fear until I thought

my child might die.

And my fears for her don’t end there – do they ever end as a parent? In addition to

deafness, Allison has gross motor delays – she never crawled and did not walk until after 18

months. Gross motor delays in addition to profound deafness from birth are markers for Usher’s

syndrome – a form of deaf blindness. And so, I live in fear that someday – maybe when she’s

ten, maybe when she’s eighteen – Allison will start to lose her vision in addition to her hearing.

And there is no way to really know until it starts to happen.

But, I realize, this is all about me and my experiences, and it is supposed to be about

Allison. When people learn that Allison is deaf, they almost inevitably say, “I am sorry,” as if

there is something to be sorry for. Because, for most of us, the thought of losing one of our

senses seems so terrifying.

But, if I am truly walking in Allison’s boots, I must realize that she could not care less

that she is deaf. She has always been a happy and optimistic soul, even as a baby. She handles all

the doctor’s appointments, tests, poking prodding, even hospitalization with grace and good

humor because she doesn’t know that she is supposed to be pissed off about it. She goes to a

school for deaf children where every kid has either hearing aids or cochlear implants. She has no

sense that she is different. She just knows that she loves school, her friends, and her teachers.

She is only two, but is probably the most empathetic person I know. She doesn’t know

many words, but she can say, “Are you okay?” “I’m sorry,” and “I love you.” And she means it.

She hugs with her whole heart and I am forever grateful to be on the receiving end of those hugs.

Of course I have fears over what the future holds for Allison, but I try to trust that her

optimism, her kindness, and her joy will carry her far. That, and her rain boots, of course.

 

[SoBlessedMama]

Mrs. AJ, that is beautiful. Absolutely perfect!!! Thank you for sharing it. : )

 

[Kitteh_Kat]

I love the positivity in this thread!

Mrs. AJ, thank you for sharing, it was beautiful

 

[mummyruston]

Beautiful Mrs AJ x