Any parents who have children with hearing loss

[Mrs. AJ]

We are lucky my dh has really good insurance so we only had to pay a $200 hospital copay. Insurance also pays for speech therapy, though we pay out of pocket for the toddler program which is quite expensive.

 

[mummyruston]

Keep looking at my newborn son (I can still call him that can't I as he's 6w old?) and wondering why he's been afflicted with bi-lateral severe to profound hearing loss.

I'm not in denial but keep asking myself why us, why our boy?!

I'm just gutted I really am and can't talk about it really without breaking down or speak to anyone who knows what I'm going through - that's why I've come here!

I feel like hos diagnosis has put a real cloud over his birth which should be such a magical time

 

[Mrs. AJ]

I know what you are feeling. Let yourself feel it, it's only natural. My dh and I actually went to grief counseling briefly after our daughter's diagnosis. There are still times when certain things will hit me and I'll tear up - sometimes tears of joy at Allison accomplishing something I never thought possible. Sometime tears because of challenges she still faces. But it has gotten. So so much easier, especially as I can see her progressing so beautifully. Remember to breathe and to just let him be a baby, try not to let the hearing loss be all encompassing, though I know how overwhelming it is.

 

[mummyruston]

Yes I do feel grief. Yet feel guilty for feeling grief when I have a perfectly happy and healthy baby albeit severely to profoundly deaf.

I guess you never think it will happen to you, especially if you've followed every guideline, been fit and healthy and a straight forward pregnancy and birth.

I guess he's such a tiny baby I just don't know how things will pan out and just hope he will progress like any other child.

At the minute he's exactly like any other baby - hearing baby and smiles, holds hos head etc. I just absolutely hope it's not linked to something else

 

[Mrs. AJ]

where are you located? Are you already in touch with some sort of early intervention program for children with hearing loss? I know here we had a social worker come out just a few days after we got the diagnosis and they were able to put us in touch with other families in our area. And counseling is helpful too. Hang in there. He IS a happy normal baby and has wonderful things in store and will surprise you regularly (and frustrate you too, that's just part of parenting )

 

[Mrs. AJ]

And as someone who's gone through the process of hearing aids, cochlear implants, speech therapy, and ASL I'm happy to be a resource as well. And if you want I can send you my fb link and I can point you to some support groups there.

 

[mummyruston]

We live in the West Midlands, UK and thankfully have two regional children's deaf societies and a support worker for sensory loss who is visiting on Wednesday for the first time who will be able to put me in touch with other families.

It's the summer holidays at the moment so most things including toddler and baby groups stop until September which also includes the sensory loss ones too.

I'm hoping once we begin to see other families and other children with aids and implants it will be more positive

 

[deafgal01]

I fully back up mrs aj when she says it is ok to let yourself feel grief, anger, sadness, all the emotions you feel about the diagnosis. My parents went thru it too. Better to feel it than bottle it up. September isn't too far off- soon you will meet others who are in the same boat you are in and your baby boy will amaze you! He will still babble and make sounds same as other babies. You will learn new strategies of how to help him to make connections to sounds and identifying them in addition to using sign language (as back up visual language). Thinking of all of you with your sweet babies!

 

[SoBlessedMama]

Mummyruston, I agree 100% with what the other ladies are saying. Whatever you're feeling is completely okay--just feel it. It will get better. There will definitely be challenges, but it will get better. He's going to do so many things to amaze you, and you'll see he is just a happy, healthy little guy who interprets the world a little differently.

When our boys got their hearing aids, it was in a children's hospital that has an amazing audiology team. But it wasn't in just a hearing clinic. So walking through the hospital before each visit actually helped to greatly put things in perspective. There have definitely been some sad parts--the two that hit me the hardest were 1) the night I was singing to the baby after we got his diagnosis, and I realized he'd never heard my voice. He'd never heard me sing "Jesus Loves Me", even though I'd done it literally every night of his life. And 2) when we were having to sit in a meeting to write the educational service plan for our older son as he started kindergarten, and I wanted to cry when the thought hit me, "I don't want to have to do this."

I've run the whole gamut of emotions, but overall, it has been an amazing blessing. Wearing the hearing aids is now second nature...in fact, just tonight, we accidentally stuck the five year old in the bath with them on because we forgot to take them out lol.

It WILL get better. It WILL get easier. He WILL make progress, and he WILL blow your mind and steal your heart with all he's able to do.

 

[horseybird]

I fully agree with the others in letting your emotions run. Its so raw for you right now and early days. I still have the odd day of feeling sad about it. But they don't know any different, they know they are loved and they will communicate with you and have a full life. I'm trying to think of it as she can do anything she wants but may have to work but harder or do things in a different way.

I feel for you. I also found it hard before we had all the tests come back. I find information helpful.

Try to enjoy him as normal baby. Izzy loves playgroups - watching and interacting with others, she loves being read to and loves swimming. We have more tests tomorrow but these will never be a stressful as the first batch of tests and are more play based. Izzy used to scream the place down in Audiology but nôw she recognises the staff and loves showing off and all the attention. It will get easier

Hugs to you xxxx

 

[mummyruston]

Thank you for all your replies. It's hard because my mum is very black and white and told me to pull myself together and stop 'moping' and get on with it.

My other half not as bad but when I mentioned about me eating a lot of chocolate and rubbish over the last few weeks when id lost all my baby weight he asked why and I said comfort eating I guess what with our sons diagnosis and he also had the same reaction and said Quinn has severe hearing loss and that's that why are you comfort eating there's no reason to be.

Luckily my friends are more understanding but can't talk them to in person face to face really as I'm always with my children and I break down crying and don't want to cry in front of our 3.5yo daughter who's already seen me very upset and has been so lovely and grown up but don't want her to see me upset so often and make such a big deal out of our sons hearing loss.

I guess when the groups begin I will have more people to share our experience with face to face and actually meet some remarkable children and adults like yourself deafgal and things will get easier to accept.

 

[SoBlessedMama]

Meeting others in similar circumstances definitely helps. One thing that has helped me is there is a gorgeous, athletic, brilliant girl that I've known for years--her dad coaches with my husband. I only found out 6 months ago when our boys got their diagnoses that she has cochlear implants. She graduated at the top of her class, and now attends college while working full time. Her hearing loss is actually between my boys (a bit worse than one, a bit better than the other.) I've known her 10+ years and never knew. There are LOADS of success stories. : )

 

[Kitteh_Kat]

I'm late to the party and echo what has already been said! You could also try to join online groups where you can interact with other parents or people with hearing loss. I'm a member of two big groups on Facebook that are for the condition my daughter has, and being able to see other experiences and everyone else's happy kids has made it so much easier. One of the admins has the condition, and whenever he sees a mother be hard on herself he tells her he loves how he was made, and he doesn't blame his parents at all. I think I almost cried the first time I read his response! It gets easier as time goes along.

Our little trooper recently got approved by our insurance to get a softband BAHA to restore hearing to her right side, so we're just waiting on the hospital to get it from Cochlear so it can be fitted! Looking forward to seeing her face when they turn it on for the first time.

 

[SoBlessedMama]

Kitteh, that made me tear up. That's great to hear the admin loves the way he was made, and doesn't hold anything against his parents--and obviously he is leading a successful and happy life. : )

That's wonderful your little one will be getting a BAHA! You'll have to let us know how her fitting goes! : )

 

[mummyruston]

So today we had our specialist Ent appt. and even though my DS is only 7w and hearing aid use and benefit is observational at this point, they believe they're not providing significant hearing for him and will be put forward for cochlear implants. A pretty low blow as not sure he can hear day to day conversation, our singing etc whilst wearing them - only loud noises. We will also start investigation into cause to rule out any additional afflictions that could be symptomatic of syndromes etc but specialist is confident it's most likely genetic mutation with My partner and I and that our daughter is lucky to havs avoided sensory loss as its a 25% probability.

 

[SoBlessedMama]

I'm sorry, Mummyruston, I'm sure that was hard to hear. I hope everything comes easily and smoothly as they begin to look at cochlear implants. There's light at the end of the tunnel. BIG hugs--thinking of you today!

As a side note, our little guy was not fitted until five months with hearing aids, and he is severe-profound, and he's caught up on all his speech milestones. So don't worry that it hasn't been helped yet. I know it is disheartening (just as a mommy who sings and talks to her baby!) to feel like he's not hearing your voice, but he will catch up on any speech he isn't hearing right now.

 

[mummyruston]

We're incredibly lucky that he was fitted at 5 wks and is already on the route to assessment for cochlea:

I have our first support worker meeting this afternoon so I can speak to her more.

 

[SoBlessedMama]

We're incredibly lucky that he was fitted at 5 wks and is already on the route to assessment for cochlea:

I have our first support worker meeting this afternoon so I can speak to her more.

Absolutely! I hope the meeting went well. Thinking of you!

 

[Mrs. AJ]

I hope the meeting went well. . Allison was fitted for aids around 6 Mos and had her cochlear surgery at a year and is doing great. It is a lot to process, but our kiddos have great things ahead.

 

[mummyruston]

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!