Any parents who have children with hearing loss

Discussion in 'Special Needs Support' started by horseybird, Jun 2, 2015.

  1. CrazyMumma

    CrazyMumma Well-Known Member

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    Wee man failed the second hearing test in his right ear. Left ear technically passed but he shows no response to sounds at all so may have some loss there too :(
     
  2. SoBlessedMama

    SoBlessedMama Well-Known Member

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    I'm sorry you didn't see the results you were hoping for, CrazyM.

    It is pretty common for such little guys to fail the initial tests and later pass--maybe that will be your little boy's situation. And if not, you can at least have peace in knowing you found the diagnosis as early as possible, since early intervention is so key. Big hugs today--I know it is a lot to process.
     
  3. CrazyMumma

    CrazyMumma Well-Known Member

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    I heard that it's not uncommon with fluid in the ears etc. But on the right the outer ear has not formed properly, it's about a quarter inch smaller than the left, and looks a bit like it's been squashed. That plus the skin tag means it's likely that the inner ear also has not formed properly.

    We are doing ok. He has the best Daddy in the world, Hubby had no hearing at all before a cochlear implant 6 years ago and now he is a fully qualified Teacher of the Deaf. He has all the contacts in our area for audiologists and education support so we have a brilliant head start there. He is fluent in sign, and myself and our kids know some basic signs already and he will teach us so we are sorted there too.

    I'm more struggling with the social aspect for Elijah. Kids can be so cruel, as can adults when he is older. I just don't want him to be treated differently
     
  4. 2lovelyboys

    2lovelyboys Member

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    Loved the holland poem and mrs AJ's words, all we can do is stay positive and surround them in happiness, every ones future is uncertain, all children bring worry, all children can get bullied about something, but there's lots of opportunities and good people, raising them to be happy and strong is the focus.
     
  5. SoBlessedMama

    SoBlessedMama Well-Known Member

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    I completely understand the social aspect of it. Our oldest started kindergarten this year. He only got hearing aids back in the Spring. I was very worried about the way they would look, and how other kids would react.
    First of all, they're tiny. Visible? Yes. Blatantly noticeable? No.

    His first day wearing them to church, a little boy said, "What are those?" Denny told him, and the boy said, "Oh yeah, I used to have hearing aids, too." (He did not lol, but it was a funny response.)

    The first day he went to pre-school with them, his teacher did a little lesson about the hearing aids and let the kids ask Denny questions. He loved it! The other kids loved his hearing aids and told him how cool they were. He told us, "I'm pretty much like a superhero now." Lol! My favorite comment from one of his friends was, "I think it's awesome because you can hear now!"

    He started kindergarten this August. Same thing--teacher did a lesson, showed them, and let them ask questions. And the thing is...it's never come up again. It is what it is, and the kids have all accepted it. He has a ton of friends, and absolutely loves school.

    Now, I'm not so naive as to think that my boys will never be made fun of for their hearing aids. (I'm a teacher lol.) They will be at some point. But so far, the response has been so overwhelmingly positive that I hope and pray that the first time they're made fun of, they're confident enough to realize that it doesn't mean anything.

    I think it is scary enough to send kids out into the world anyway. We want to protect them. That's why we have to raise them to be strong and confident, and trust they'll know how to react when an idiot makes an unkind remark.
     
  6. mummyruston

    mummyruston New mummy to baby girl

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    I also worry about bullying too but my Teacher of the Deaf said only this week they were in a primary school with Super Ted who wears glasses and hearing aids / cochlears and they go in saying they're extra special because hearing aids get to listen to super cool stuff and can listen through walls (they did the FM thing)

    I'm absolutely hoping he won't be bullied or my hearing daughter for that matter as 2Lovelyboys has said - it's a worry having children full stop!
     
  7. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    Yes definitely a worry. Right now my daughter is at a school for deaf childen which I absolutely love and so does she, but I do worry about when she mainstreams in kindergarten. ..
     
  8. CrazyMumma

    CrazyMumma Well-Known Member

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    SoBlessedMama that's awesome that your boys havent had trouble. I love the idea of getting it all out in the open first off and explaining it to the other kids. Thank you for sharing that :)

    Unless we move 6hrs away there is no school for the Deaf here. Something we may consider down the line though if his hearing loss is severe.

    Elijah's next appt is not until he is 7 weeks old. They won't see him before 4 weeks corrected age and as he was 3 weeks early we have to wait. I just wish I knew how severe his loss is so we could figure out how to help him. We think his right ear has profound loss, the ear itself has not formed properly and is noticeably different to the other. His left ear seems to have some loss as well as he only reacts to high frequency sounds. I keep watching him to see if he startles to sounds but the only time we got a reaction was when hubby tapped a pot with a fork next to his good ear. I'm driving myself insane trying to see if he responds to things!
     
  9. SoBlessedMama

    SoBlessedMama Well-Known Member

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    I did exactly the same, CrazyM. I can't tell you how many times I snuck up on the baby and made some obnoxious sound to see if he could hear it lol.

    As far as a specialized school, our oldest is doing great so far mainstreamed. His loss is moderate-severe in one ear, and severe in the other. With his aids, he hears better than I do lol. Our baby is severe-profound, and with the aids, he responds to everything, and has met all his speech milestones. (He's almost 1.)

    So, what I'm trying to get at is that even with substantial loss, my oldest is doing really well, and based on what I can currently see, I expect the same of the baby. A specialized school would have amazing benefits, but there is also no reason that your little one won't thrive in a local school as well. : )
     
  10. FutureMrs

    FutureMrs Well-Known Member

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    Hi All,

    I just wanted to post some encouraging words for you all My sister and I were both born hearing impaired, to be honest we still don't know if it was genetic or a result of medication my mom was on while pregnant (she was hospitalized x 2 with high blood pressure for a month during both pregnancies). Regardless it really doesn't matter. I am now 28 and my sister 26, we are both getting married this summer and have been extremely successful. My sister top of her class in high school. She went to university on a full athletic scholarship and led the university soccer team, she now has her masters in audiology. I graduated top ten from high school, went on to get my BScN and became a NP. I hope hearing this will remind you were not that different, and given a loving environment your babies will thrive just like any other baby. My sister and I have both never had any issues with bullying, and have wonderful, successful friends. My hubby to be and I plan to TTC after our wedding in May and I would be lying if I said I wasn't a little bit worried about having a child with hearing loss, but with the right tools all will be okay! You all sound like amazing mom's :)
     
  11. SoBlessedMama

    SoBlessedMama Well-Known Member

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    FutureMrs--thank you so much for taking the time to post here. You and Deafgal both are wonderful examples and inspirations for what our little ones can achieve. Thank you. : )
     
  12. FutureMrs

    FutureMrs Well-Known Member

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    Of course! My mom kept a journal throughout her pregnancy up until we left home, and reading the portions of the journal where she starts to discover that we were both HOH was really very moving, I feel for my mama and all your mamas that the uncertainty is scary! Being able to go back and read through that as an adult put into perspective my parents journey with two HOH kids. :)
     
  13. SoBlessedMama

    SoBlessedMama Well-Known Member

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    I'm taking both of our boys for their check-ups tomorrow. They will run them through a full hearing screening/panel and see if there has been any change. They will both also get new molds for their hearing aids made. They are both doing so well--I really hope the screening reflects that, and that their hearing has stayed stable since their last appointment.
     
  14. mummyruston

    mummyruston New mummy to baby girl

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    Thank you so much for sharing! I love to read these stories and have emerged myself online with so many forums and I'm
    Literally witnessing so many amazing people do outstanding things like you and your sister with hearing loss.
     
  15. CrazyMumma

    CrazyMumma Well-Known Member

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    Really struggling atm. We know little man is likely profoundly Deaf. A mum said to me at school pick up as all the kids were running around noisy "gosh he copes well with noise" I had to stop myself crying. I don't want him to miss all those sounds :(
     
  16. 2lovelyboys

    2lovelyboys Member

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    Crazymuma, they are all normal feelings, there are days where you are strong and positive about the future what you can help them achieve, then there's down days when you think why my child, how life would be different with out all the worry and hospital appointments, their future overwhelms you.

    People say weird comments but unless you are living it it's hard to explain how it feels, unfortunately there's not a right thing to say and I found my emotions made me extra sensitive to any comments, sometimes a cry is good and then your back on that positive focus, your not alone,

    I also found it easier when my boy was smiling and laughing he's not bothered he's happy and one day he will have hearing just a slow process xxx
     
  17. SoBlessedMama

    SoBlessedMama Well-Known Member

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    I'm sorry, CrazyM. I understand how you're feeling--and I agree with everything 2Lovelyboys has said.

    It is okay to be sad and have a cry. Things will get better. And, that being said...my five year old says there are definite "good things" about having hearing loss. (This is directly from him--he has severe hearing loss.) The day he got his hearing aids, he was so fired up because, "No one can ever give me a wet willy!" Since then, he has figured out that if the baby is crying...no problem! He pops his batteries out and goes about his business. He had to sit with us in "big church" one day because his chapel class was cancelled. He popped his batteries, curled up, and took a nap.

    I'm not minimizing anything you're feeling--I've been there, and it can be very, very sad. I still have sad days. But I also want to say that if a little goofball can find fun and light when HE is the one having to deal with the disability...then I can, too. Big hugs, mama. You're not alone.
     
  18. mummyruston

    mummyruston New mummy to baby girl

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    Couldn't agree more. Now my boy is giggling and smiling (much more than his hearing sister might I add) I kind of forget he's deaf - regardless of the fortnightly mould meetings, daily cleaning of moulds and constantly fiddling with their aids etc.

    But yes sometimes it's hard because you tell your circle of friends and family and kind of accept it even though you cry still yet in more unfamiliar social environments it's harder to come out and say well actually they're profoundly deaf.

    I find I'm telling more people now and he's awake and wearing the HAs more often (3m old) as he's quite strong and is holding head and back up mostly unaided (not sitting though).

    Get yourself on fscebooks closed groups and forums and see videos of some amazing deaf / HA / CI wearers - especially young children reading, singing, playing football, piano etc!! You think wow !
     
  19. SoBlessedMama

    SoBlessedMama Well-Known Member

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    It made me tear up to read this--you've had quite the evolution in the past two months. : ) You and your little boy sound like things are going amazingly well!!!
     
  20. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    I agree with everyone else. It is a grieving process really - and one that never ends entirely but does get easier as you see the awesome things your kid is capable of in this 'new normal'. :hugs:
     

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