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.
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. : )
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.
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.
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.
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!
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