The Happy and the Joy? Not So Much.

We just found out today that SillyBilly has moderate hearing loss and will probably have to wear hearing aids permanently.

I’m actually rather philosophical about it, as I’ve known hearing-impaired people, technology has improved a lot, it’s not a relatively huge problem, etc. … but, it’s still quite a shock. Working was pretty shot today as I Googled everything and made lots of phone calls.

SillyBilly was tested after his long hospital stay at birth, at which time everything seemed normal (as normal as you can determine with a one-month-old). Then we didn’t have any clue until his 5th birthday checkup in September, where he “failed” at a certain range. Then that failure happened again at a follow-up test in December. Today’s test was with an audiologist. Next we see an oto-laryngologist to get an “official” determination.

Things we’re thinking about today: How often will we need to get new hearing aids as he grows? How hard will it be to keep them from being destroyed by little curious hands? How expensive are those tiny little batteries?

Things I’m not worrying about today: If he’ll be teased in any way. (I know I can help him see how teasing means nothing as far as his true self.) How to pay for hearing aids. (New York state has a wonderful program to help people pay for these things if they are stuck between not qualifying for Medicaid and not having private insurance coverage for them either.)

SillyBilly’s hearing loss is in the higher pitch range, which affects speech recognition. I’ve already called the school district to see if he can be evaluated by a speech pathologist. His verbal skills, at least anecdotally, are above average (see my Kid Talk category for evidence of that!), but later his classroom learning could be adversely affected. Today the audiologist said his speech recognition is still within the normal range, but that in a noisy setting, like a classroom, he could have trouble. We’ve already experienced that in the car: we are treated to him yelling “What??” constantly! Also certain sounds typically fall into the range he lacks, so that individual word recognition could suffer.

The other thing that hearing loss can do is affect the child’s behavior. He could appear to have “selective hearing,” could be tired out by the effort of listening, and could be perceived as distractable or inattentive. It will be interesting to observe for any changes once he can hear properly.

And the last little wrinkle: the audiologist suggested that Napoleona and I have a hearing test as well! She said that SillyBilly’s birth trauma might not be the cause of his hearing loss — sometimes there is a genetic component. It is true that I have some hearing loss in one ear (I’ve always attributed it to poor drainage damaging the middle ear), my mother now wears hearing aids, and her father had some hearing loss too.

I never thought that I would gain any parenting wisdom from Saturday Night Live, but Roseanne Roseannadanna was right: It’s always something!

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17 Comments

Filed under Health, Parenting

17 responses to “The Happy and the Joy? Not So Much.

  1. Hi, your post came through on Google and I ran right over. I have a hearing loss, as does my daughter and I run the HearingExchange website. There are many places there where you can find information for this new journey you are embarking upon, including the “Paula’s Pearls” section and the Message Boards. I highly recommend that you join the Listen Up listserve at Yahoogroups. It is an awesome group of parents who have kids with hearing loss of all ages and stages. You won’t be disappointed. They also have a website full of info at http://www.listen-up.org.

    I’m in New York too so if you want to email me privately, I’m happy to assist you in finding whatever you need.

  2. I’m sure Gilda would be glad that that’s her legacy…I hearty and much-needed laugh.
    Because I know you get adjusted, I gotta say, “Get Silly Billy to a pediatric Chiro! Remember, the adjustment that founded chiropractic allowed a deaf man to hear again.”
    As for the hearing issues: really, doesn’t every man suffer from selective hearing? He’ll probably end up doing better than his peers because he has you and Anthropapa’s wonderful support, and you will forever be aware of the issues that may present themselves.
    As for school: just give us time. We’ll make a Waldorf homeschooler out of you yet!
    Big hugs for you after this tough day.

  3. I’m sorry you’ve gotten this news. Our Waldorf School has 2 hearing impaired children and I think it’s working out well for them. The kindergarten actually installed a sound-dampening something or other in the ceiling of the kindergarten which ended up helping everyone 🙂

  4. Paula: Thank you, I will be reading over those web pages soon!

    GoodWitch: We still haven’t found a chiro to our liking, sigh.

    Sarah: It’s good to hear what happened at your school, as I’m not sure Waldorf schools are typically very able to accommodate unusual circumstances (without state funding)…but I could be wrong.

  5. Very sorry to hear your sad news. I think you are handling it well by not worrying about everything. I hope you find the support you need as a family, and that, with hearing aids, SillyBilly’s life is made easier and not harder.

  6. It never just rains, does it? I’m sorry to hear this but I’m sure, however, that you will all come through. Like anything though you always expect that it will happen to someone else and are never quite prepared to receive the news yourself. I hope that all of your questions are answered (satisfactorily) and that hearing aids will put an end to the chorus of “WHAT?” from the back seat. Imagine how thrilling it will be for SillyBilly to be able to hear more fully than he can now.

  7. Charlotte: That is our goal, that his life be made easier. I do sense that there is a lot of support out there.

    Kerryn: We were just talking at lunch today about how we noticed that he doesn’t sing as much as he used to…I’m looking forward to the possibility that that will change.

  8. Nana

    Do you remember when you first got glasses? Probably not, but you were just a tad older than my brilliant grandson.

    Glasses are a LOT more noticeable than hearing aids. They are easier to break and, believe it or not, easier to lose. Also, it is quite common for the little things that go in the ears to prevent further hearing loss. That’s the good news.

    Most private health care policies offer some kind of vision plan –not so with hearing aids. You are pretty much on your own figuring out how to pay for them. The batteries will need to be replaced less frequently if you remember to disengage them whenever they are removed from his ears. You will need to see that this is done at bath time and when my brilliant grandson goes to sleep. That’s the not so good news.

    Outgrown or outmoded hearing aids are often sent to charitable organizations which distribute them to those who would otherwise go without. That’s the best news.

  9. My little guy has moderate hearing loss as well- he outgrows his earmolds VERY frequently, but he’s only 5 months old, lol. A lot of the older kids seem to go through them depending on their growth rates- every 3 months or every 6 months (depending on the kid). Some kids get to the point where they go through them only once per year. Along with Paula, I highly recommend the listen-up.org email list. It’s really helpful, and there are a lot of kids with varying degrees of hearing loss there!

  10. Nana: I’ve been thinking of this in relation to wearing glasses…just something that will help him function at his best. Great reminder about outgrown hearing aids…so much to learn about all this!

    Leah: Thanks for stopping by. I just joined the listen-up Yahoo group!

  11. It gave me a real shock to read your “It Never Rains…” post and then this one. Since SillyBilly is such a great talker, I never imagined he would have hearing loss. I think he is in exactly the right family, though. When Kiko was born and we were told he would have problems, I thought: “Well, he has us in his corner!” and that’s the same with SillyBilly and you.

    By the way, my dad has hearing loss due to industrial damage and has worn a hearing aid for years. From my perception, when he wears the hearing aid, his hearing is absolutely functional.

  12. Helen: I know, it’s such a surprise given his overall verbal ability! But he’s got that on his side, as well as his family in general. Maybe this is why I spent all that time working in health insurance, so I’d know how to navigate all this for him!

  13. deb___c

    Hello,
    I know this is an old post – but, I happened upon it. Looks like you are already getting all kinds of good information – and I was glad to see Paula from Hearing exchange had posted. That website was a huge help to me when I needed it a few years back.

    I have a son who has mild-moderate hearing loss… probably born with it… not detected til he was 4. He started wearing hearing aids then and seemed to be doing fine… better than fine. He was doing so well, we didn’t think he needed any special consideration at all really.

    It wasn’t until 3rd grade that he started having problems in school… which I found out later is normal for kids with mild/mod hearing loss – since that is when they start having less visual clues, and more complex verbal directions. Makes sense. But, at the time, his teacher did think he was having “behavioral” problems. It was awful. They acted as if his sudden “problems” were NOT hearing related… but, instead might be ADD – which I also found out is a common misdiagnosis.

    And since he had been doing so well in school up til that point, they gave me a bit of hard time getting him a 504 plan and set up with an FM system. Telling me he was doing good enough. ?!?

    He’s now going into 6th grade, and the FM has been a huge assett the last few years. He’s doing well, and we are hoping the transition to middle school will go smoothly.

    Anyway – hope all is well.

    Take care,
    deb

  14. Hi Deb, I tried to respond but your email address wasn’t valid.

    Thanks for sharing your story. My son will be getting his hearing aids in a few weeks. Since he’s not in school yet, I’m kind of storing up all this advice for later 🙂 We’re also not sure what kind of school he’ll be in, so we’ll have to see how it all goes.

    I’m glad your son is on the right track. It’s so easy to just label someone with the first thing that comes to mind (ADHD)! Our audiologist had already established the likely need for an FM system
    for my son, since his big loss is in the higher ranges (speech recognition).

  15. Sorry about the email… I just changed it, and must’ve messed up. It’s debc.ny@gmail.com… and I started a blog called hearmehearmenot.wordpress.com. I put links to articles and info I found useful that deal with mild-moderate hearing loss.

    They (doctors, audiologists) told us my son “might” need an FM, “at some point” too. But, each year, he seemed to be doing great.. so, we didn’t think he needed it.

    Not til 3rd garde… when he first showed any real signs of having trouble in school did it get brought up – by me – and, then the school initially tried to tell us they didn’t think he DID need it. ?!?

    At one piont, they told me he might not qualify for it because he “wasn’t failing”. They were wrong. H qualifed on his level of hearing loss alone – and we found he probably should have been using the FM, and would have benefitted it from it, all along…

    There’s also info lots of other info you can apply, even before school. For excample, until I really researched things on my own, I didn’t realize that hearing aids only pick up sound within so many feet… so, if I was out of that range.. they didn’t help him at all. And how he really needed to stop doing one thing, and look at me, before he would be able to hear me. Little things like that…

    Anyway…Take care… sorry for rambling.

    Deb

  16. PS – Can you tell me what is the program you were referring to when you said,

    “New York state has a wonderful program to help people pay for these things if they are stuck between not qualifying for Medicaid and not having private insurance coverage for them either.”??

    Because we didn’t quailfy for diddly-do… and I had to cough up $4000 for his last hearing aids…

    debcny

  17. Deb, as I said in my email to you, the program in NY is PHCP: Physically Handicapped Children’s Program. It was originally run by the state, now by the counties. We ended up with only $50 out of pocket! It’s very much worth looking into if you don’t qualify for other state aid.

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