You can get hearing aids with zebra stripes these days or leopard print. Laylee’s got her heart set on a dainty set with pink flowers. They’re small like her ears and hopefully won’t fall out when she’s running around the back yard or playing tag at school.
I told her they’re like glasses for her ears, that even though she can hear fine now, she’ll have SUPER-HERO ear power when she gets her new ear jewelry. I told her she was lucky to get them. I didn’t tell her it was no big deal because telling her that implies that her hearing loss might be a big deal and I never want her to think that. But it’s sure a big deal to me in this moment.
This morning I drove her to a hearing and speech clinic to have her ears checked. We’ve noticed some problems and the more I’ve looked the more problems I’ve noticed. I tried to tell myself I was imagining things. It took some coaxing from my next door neighbor before I took her in to get tested.
Her preschool report card listed her as advanced in nearly every way. The only areas where she was “satisfactory” were things like “needs repeated teacher directions,” “displays listening skills” and “easily distracted,” things that could be easily explained if she were having trouble hearing. I can stand behind her and talk about ice cream in a loud whisper and she has no idea I’m saying anything. When I call to her from a distance, it seems like she’s ignoring me.
The doctor put a camera in her ears and projected the image on a large monitor. Aside from a stray “ear whack” or two, they looked lovely. He said there was no damage from the gazillion ear infections she’s had. Good news.
Then into the booth we went. The doctor said I could stay with her if Magoo and I could stay quiet. Ahem. Yeah. So we stayed in the booth for a few… seconds before he came back in. For some reason Magoo’s constant seemingly-involuntary whispers ruined the effect of the sound-proof booth and we were kindly asked to leave. Laylee was nervous to be alone but she hung in like a trooper while we waited in the lobby for some news. Magoo asked me to read star dating news to him from an old People Magazine. Before we even found out if John-ifer would live happily ever after, the doctor came back and took us into an exam room.
He was sweet and had a good bedside manner but he also spends all day doing this and seemed very casual about the news he delivered. She has some hearing loss which makes it impossible to hear certain frequencies at certain volumes. What she’s missing are consonants so what she hears when someone talks softly or from far away is a jumble of vowels that mean nothing to her.
“Is it something she’ll outgrow?”
“Oh no. It’s permanent…. [something about hearing aids.]”
“Was it caused by her ear infections?”
“No… [something about nerves being dead and a special microphone her teacher will need to use when she starts kindergarten next year.]”
“With these diagnoses, we always recommend a second opinion so you can schedule that at the same time as your hearing aid consultation.”
Because I am the best mom in the world, I was able to freeze my face into a grin to avoid squeezing anything near the eye area, which would likely have let forth the blast of weepage building in my throat. I stayed cool and Laylee was unaffected by the news, possibly because she did not hear the news.
So the new hearing aids do look cool… for hearing aids… but I’m conflicted. They’re not really like glasses, not completely. You do not see kids all over with hearing aids the way you do with glasses. I want to ask the doctor if Laylee has to wear them all the time and I picture him responding, “Um… only when she wants to hear well.” Even wanting to ask that question makes me feel like a bad mom, too concerned with appearances like the mean aunt on Anne of Avonlea who never lets her niece wear those “ridiculous spectacles” even though she’s practically blind without them.
Of course I want her to hear well but I don’t want her to feel self-conscious. It will shred my heart if I have to watch her confidence wither, to realize there’s something different about her and start to think it’s a bad thing. I will not allow it.
I have so many questions I was too shocked to think to ask until after I left the office. Is it degenerative? Will she continue to lose hearing? Are there any other options for treatment? What COULD have caused this if it wasn’t the ear infections? All afternoon my brain has conjured up images of loud concerts we’ve attended, fireworks displays, times she put on my head phones with the sound turned all the way up. How could I have protected her better?
I keep thinking of times I scolded her for not paying attention or coming when I called her. I want to squeeze her and never let go, to buy her ridiculous things we don’t have the money for that wouldn’t help anything. I feel guilty for joking around in this post, a post which seems cruel and in horribly poor taste at this point.
But at least the doctor seems to think I’m a good mom. He said he was impressed that we were paying close enough attention to catch it. This type of hearing loss can often be misunderstood as a lack of attention or inability to listen to instructions.
I really am glad we did and that we can help Laylee to be more successful. I’m grateful that we have the means and the technology to help fix what’s broken. I just always wish my children would have perfect lives or at least that I could choose their trials. Maybe Magoo could have a mean friend in 2nd grade who taunts him for a couple of weeks to teach him humility and then moves to Siberia so Magoo can get on with his life. For Laylee I might wish bad hair or an inability to learn the Cha-Cha well enough to compete on an international level.
I don’t think any of us get out of this life without being different in some way that molds us.
I think Laylee is a lucky girl to have a mother that not only caught the subtle signs, but that won’t allow her to be affected in a dramatic way. After all, some kids have diabetes, some kids have ADHD, some kids break an arm, or some kids are terribly shy.
But those patterned aids probably look really cool.
You have me wondering. My 5yr old daughter does some of the things you’ve mentioned about Laylee. She had TONS of ear infections too, and I’m wondering….. I def don’t think you’re a bad mom. On the contrary, I’m questioning my mom skills because I’ve never thought of hearing loss as something that might be causing some of the irritating stuff MINE does. Live and learn, right. Also, thank God that hearing aids aren’t the big, weird looking things that kids wore when I was in school. Thanks for the post and getting my brain thinking.
I completely agree with Azucar. You’re doing a superfine job being the momma who trusts in God. The hearing aids will just be a way of life for Laylee. She’ll adjust and so will everyone else.
I don’t think you have anything about which to feel guilty. You’re doing everything you can to provide the best love and support for your family. There’s no manual and you don’t have the ability to see people like Jesus did. You’re winging it like the rest of us. Thankfully, you’re on your toes when it comes to your kids!
Know that I’m praying for you, Kathryn. Sometimes it’s hard to be the mom. This doesn’t have to be one of those times.
Amy Lawson says
Oh, good luck with everything. Did you get the answers to all of your questions that you thought of in the car?
I know what you mean about not wanting to make a big deal out of the hearing loss so she doesn’t feel different. ~K~’s diabetes has been used as a crutch for her way too long, and it’s hard sometimes for her to get past the “I might get low” thought long enough to get off the computer and go play outside. But you are already aware of this possibility, and knowing is half the battle.
My dear friend Kathryn. My Mother’s heart is weeping with you. I don’t want to say anything trite or cliche. So I’m just gonna say that I am sending you hugs. Not to mention a few prayers for strength.
I just always wish my children would have perfect lives or at least that I could choose their trials
I think you’ve hit on every mother’s wish. It’s hard to run up against the limits of your own protective power, really hard. But you’re doing a beautiful job and good for you for catching her hearing issues early.
For what it’s worth, my sons know several kids with hearing aids and neither of them has ever remarked on their friends’ devices. It seems normal to them–like glasses, as you said.
Well, I think pink flowers are a good start.
I know you know this, but you can’t beat yourself up about it. You didn’t know. If that’s the worst mistake you ever make–Pshaw! I’ve got you beat already.
You’re an AWESOME mom.
You will start to notice now how many children actually do wear hearing aids. Its a lot harder to see on the girls with long hair, but they are out there. My little one has had them since she was 10 weeks old! She’s 17 months now. Other children have been quite understanding and sweet about it. I just explain to them that they are like glasses but for her ears, and they seem to get it and don’t treat her any differently.
I think you are brave for just posting out your sorrows and fears like this. You are a great mom. I think the most important thing for a child’s confidence is unabashed love. And I know that Laylee has no lack of that.
And while you need to be positive in front of Laylee, if you need to cry it out, go for it. Pillows are very accommodating that way. It’s perfectly normal and okay to let your feelings come storming out when they need to.
You’re doing a really great job.
Agreed. Awesome Mom=You. And this post is beautiful, Kathryn.
My friend Lizzie [I’m not good at html tags, so here’s her URL in long hand: http://tomlinsontrio.blogspot.com/%5D has a beautiful daughter who just turned three years old. When she was 9 months old, they discovered she was deaf. She now has a cochlear implant that works fairly well, and they are working on auditory language now (as opposed to sign –just for the time being). But anyway, she knows what it feels like to have something drastically “change” in the life of her child. Maybe it could help you, too…?
Oh, honey. Sending you BIG BIG BIG hugs.
God doesn’t give us more than we can deal with, sweetie. It’s not too much for Laylee and it’s not too much for you. Deep breaths.
One of my daughter’s best friends has hearing aids (she is now 11 has had them since we’ve known her in 1st grade). They are tie dye and really cool!! The other kids think nothing of it. They think it’s cool when the teacher puts on her “special microphone” and the kids love when they get to wear the microphone if they are up in front of the class.
This kid is the perfect slumber party child!!! Take out those hearing aids and she is out like a light!! She can’t hear the rest of the giggly girls that keeps her up all night.
I’m sure it’s hard as a mom to deal with but from your posts she seems like a cute outgoing little girl so I’m sure things will be fine.
Oops, don’t know my own blog address :- ). I’ve corrected it now.
I had the same thought as the doctor, you are a good mom to recognize and take her in as early as you did.
I was a child with a noticeable “imperfection” and I have to say, parents have the ability to make confidence blossom even more readily. My parents made the difference and I am reaping the benefits as an adult. It has made it easier for me to make friends because I worked at it as a child in order for people to look past my difference and recognize me. It has made me more socially aware and I think empathetic/compassionate. Not trying to toot my own horn—but it’s something I have thought about a lot.
Now as a mother I would never want my own child to “suffer” and I so understand where you are coming from. Fortunately, you have worked hard thus far, and this “bump” will be just that. I bet you could make Laylee the envy of her kindergarten class. I bet should could make herself the envy.
Karen @ Simply A Musing Blog says
I don’t normally comment, because I feel I have nothing to add, but this time I need to tell you something.
As an adult who has had hearing problems since childhood (I have severe tinnitus – a ringing in my ears that inhibits my ability to distinguish consonants or hear any high pitch like a tea kettle), I have to say that the only way Laylee will ever feel that her hearing aids are an issue is if you make them one. (which I’m sure you’re not about to).
You ARE a good mom, at least from what I can tell from reading your blog over the last year and a half. Just keep loving your little girl and she’ll never know any difference – there is no such thing as “normal” anymore, not in my opinion.
And don’t be hard on yourself for joking about things like that – if you can’t laugh at life, then what’s the point? I am still the butt of many jokes in my family – it doesn’t bother me. It just makes me feel accepted and NOT PITIED. 🙂 I hate pity. It’s a dirty word in my house. 🙂
A little guy at our church has clear ones that have SPARKLES in them (glitter) and the first time I saw them I told him they were SO COOL~! He grinned from ear to ear.
The FM thing will be good. My little guy (see above) gets “lost” in Sunday school because the class is large and even with his hearing aids the sounds become a jumble and it’s hard for him to understand what’s going on (mom is afraid to being the transmitter because it’s $$$)
Write down your questions and call the doc back for a consult.
Kathryn, this is probably only the 2nd or 3rd time for me to comment on your blog but I just have to give you a big virtual hug after you shared your sweet heart with us.
First, I have to tell you that you are not a bad mom. Satan wants you to assume some kind of weird guilt and to take some sort of weird judgment against yourself because there is something wrong with your beautiful daughter. That is not truth. That is a lie. That is just wrongness that Satan dishes and we moms tend to take to make a fine situation bad.
Second, I’m convinced there is nothing worse in the world than when the first person tells us there is something wrong with our child. Our children are supposed to be perfect. No problems – visible, emotional, etc. And when that first expert looks us in the eye and tells us that their body is flawed . . . it sucks. hard. When the fact is there is something wrong with everyone. All of us. And our children are not the exception. Even if we did take folic acid everyday and never let a bite of chocolate cross our lips when we were pregnant with them. (because if you haven’t started second guessing all of the care you gave her while she was in your womb, you will. its a weird sneaky trick that Satan plays on us to make us feel responsible for all bad things in their world.)
And last. I am quite hearing impaired. I couldn’t wear hearing aids until I was in 6th grade b/c they had to wait for my head to get big enough so the batteries wouldn’t interfere with one another. And I wore them through college and grad school. And haven’t since. The reason I say this is that your question about her needing them all the time is a perfectly valid one. There are different types of hearing losses. Mine is the kind that hearing aids only made a difference in a crowd and I needed to focus on one sound far away. But if there was any amount of background noise, the aids wouldn’t help. Oh, and don’t wear them in water. 😉
My 5 year old has serious arthritis and a few other problems. Periodically she will do this ‘I hate myself’ ‘why did God make me like this’, etc. It is painful to hear but it comes from such an honest place. And so when those times come we talk about how there is something wrong with everyone and nobody is perfect. And how I’m so glad that God made her my baby and I wonder why God thought I was special enough to be her mommy. We talk about how with some people, you can see what is wrong with them (glasses, wheelchair,etc.) and some people you can’t (diabetes kids have to take more needles and ‘blood shots’ than she does, etc.)
This was too long. If its too long, feel free to delete it!
All Adither says
Oh, I can only imagine how heartbreaking that must be for you, as a mom. It’s really difficult to accept that our kids will be “different” in some way.
My son has eczema, which can be a bit unsightly, and severe food allergies. So he will have to sit at the peanut free table in Kindergarten next year. I hate the thought that he could end up there ALONE, that there are so many foodie things/events in life he can’t be a part of.
Anyway, I’m just saying that while we don’t have the same issue at all, I’m pretty familiar with having a kid who has some special needs.
I’m sure with you as her mom Laylee will grow into a lovely, well-adjusted woman.
There is no better mom for Laylee than you!
It is a hard thing to see your children have trials. But she is still the same girl she was before you went to the doctor. You just have some new information about her.
Hang in there.
When the letter came in the mail saying BabyGirl had failed two vision tests at school I was floored. How could we miss the fact that our child couldn’t see?! The doctor assured me that children adapt amazingly well & most parents never know there is a problem. BabyGirl is precious in her glasses (that she never wants to wear) and I’m sure Laylee will be cute as a button in her sparkly, floral, Fancy Nancy-est hearing aids.
And you are a wicked good mother with mad skills. Remember that!
Lots of love to you, Kathryn. In spite of all the positives, it’s hard to keep your heart from breaking even just a little bit. (hugs)
It’s also okay for YOU to mourn for a little while. The “perfect” life we all envision for our kids has been snatched away from you right now–it’s okay to be sad and fight the feelings for a while. You’re doing a marvelous job keeping it away from Laylee, and that’s important, but don’t forget you and your husband have to adjust too.
Good luck. You guys are in my prayers!
Amy R. says
It is heartbreaking enough when your child goes through a “little” trial! Of course it feels like a big deal to you in the moment. Try not to dwell on what you could’ve done. You are a great mom!
I think that since Laylee is still young, her reaction to her
hearing aids will largely shape her friends’ reaction to them. She will look fabulous in her pink flowered set!
Awesome Mom says
Hugs to you. It is very hard to find out that your child is going to have real challenges in life. I think that was the most devistating thing for me about Evan’s stroke. I clung to the promise of the neurologist that one year post stroke he would be completly recovered, but as that year came and left it was very apparent that the effects of the stroke were still with us and would be for some time.
Sorry this is long, but I commend you on being such a great mom to Laylee and even noticing that she might have a problem.
My husband was held back in school and labeled as dumb because he didn’t read very well and had a lot of difficulty learning. He was teased by students and put down by teachers. After he graduated from high school (barely) it was discovered that he had hearing loss similar to the way Laylee’s is. He can only hear the vowels sounds, and different pitches on the high and low ends of the spectrum are missing for him. He got hearing aides and finally taught himself to read because he realized he’d probably never learn anything else in life (after school) unless he could read about it. I can only imagine how different his life would have been had they known he couldn’t hear! Unfortunately his condition is degenerative and each passing year he loses a little bit more.
My kids just accept their Papa as normal. Even my 16 month old twins know that if they need him, they have to go to him to get his attention. They can see if he doesn’t have his hearing aides in and they’ll point to them and point to his ears because they know that’s where they belong and they know he can’t hear them until they are in. It’s amazing how they know that!
In tha last year I have noticed that my 2nd child isn’t hearing as she should. They tested her as an infant and said she was normal, but my mother’s instinct in the last year tells me something is not right. She hears things incorrectly, or not at all. So next month she will be tested for hearing loss again. I think had I not known my husband and how he struggled in school, the idea of my daughter being diagnosed with hearling loss would be devastating to me. But because I know how horrible and unfair the alternative can be, I’m thinking it’ll be no big deal – for me or for her.
Hang in there! It won’t be as bad as you first think it will be I bet!
mother of the wild boys says
The older I get, the more I realize that everyone has their trials. Here’s some more cyberhugs for you. 🙂
Laylee seems like she has such self-confidence that she’ll take the whole hearing aid thing in stride. Both of my boys have been in school with kids with hearing aids, and they are so matter-of-fact about it. They’re like, “That’s my friend Kamber, she has special ear things to help her hear better.” They don’t even think about teasing, or that it would even be something to tease about. Don’t worry, she’ll do great.
Oh Daring!! I am wishing I could give you a hug right now.
I commiserate with you about the trial thing. I wish I could choose a few different ones as well.
My niece is deaf, so we are buying the signing time DVDs. They are awesome. My girls love to talk with their hands, and they have learned so much.
I know Laylee can hear plenty, but she may love learning a new language for the times you are across the room and she isn’t wearing her flower power.
You are amazing and your kiddo’s are mega lucky to have you for a mommy.
It’s easier for me to handle the trials that I’m given, than it is to watch the munchkins go through their own. As mom’s we are their protector’s and nurturers and we always, whether warranted or not, shoulder the responsibility. That’s the nature of motherhood.
I do have a firm faith however that the difficult things we go through can only help make us better people (but only if we really want it). And yes, it did take an awful long time to get that faith.
So whether its my son’s mental disabilities, Laylee’s hearing difficulties, or Sadie’s brain tumor. These children are so precious to our Heavenly Father and he has something awesome in store for them to be willing to let them go through the experiances that they have now.
It’s o.k. to have little pity parties now and then too. Just part of the process. Hang in there because your the best!
I agree with a previous commenter- it’s okay to be upset about this- you wouldn’t be human if you weren’t. But it really sounds like you and your daughter are handling this amazingly well. Your attitude about the whole thing will really affect how she responds and how she deals with her difference in the future. And I think that you have a great attitude about it. I’m sure that good attitude will come and go, but it seems like you’re starting off dealing with this in the right way.
Laylee is lucky to have you as a mom!!
You kept that grin on your face and for that, I salute you! You will set the standard for her at home and she will know that everything is ok. She will take that strength out into the world and nothing will be able to penetrate the security that she will feel.
You are doing a great job, random people on the internet say so! 🙂
Heather O. says
It’s hard to find out your kids aren’t “perfect”. Good thing she’s so cute. This is going to take some getting used to, so don’t be too hard on yourself that you didn’t adjust to the news right away. This is big. Let it be big.
In some ways, too, this is BETTER than glasses. You don’t immediately see a hearing aid, and there aren’t catchy taunting phrases for HA wearings, like there are for glasses. At school, it could be a cool toy, because nobody else has one. Not like boring ‘ol glasses.
The saying “this too shall pass” seems like a cliche but it’s true. You will continue to be strong for your daughter, be her best advocate and show her that she is no different than anyone else.
I agree that you will notice more hearing aids once Laylee gets hers. My son had positional plagiocephaly and wore the special “helmet” when he was 4 months old.
I was devastated. And angry. I’d never heard of plagio before and wondered why my pediatrician didn’t tell me it was something to be careful of. But, after we got over the shock we switched into “we can totally do this and he’ll be just fine” mode.
I’d never seen a child with the helmet, but once my son had has, I noticed them all the time. Now my son will see a child with one and say, “hey they have the same special helmet I used to wear.”
It’s OK to feel everything you’re feeling. Cry. Rant. Throw things. Whatever you need. Laylee is surrounded by love and support and that’s what matters in the end. Good luck getting all your questions answered. <<>>
Glasses, head gear, braces, pocket protectors. —socially are “nerdy”.
Hearing aids with flowers……Mega Cool!
Good for you for finding it so early!
sweet mama entropy says
Kathryn, I’m so sorry that you and Laylee (and the rest of the daring family) are having to deal with this. Hugs to all of you.
And I know how you feel about worrying about “differences.” Lij is in speech class and (here, at least) that’s considered being in “special ed.” I shutter to think what that will mean for him when he enters Kindergarten, so much so that I’ve even thought of pulling him out of speech once he’s school-aged. Aren’t we funny that way, we parents?
I’ve also been through the whole “what did I do wrong” thing, especially now that Cole has had to start speech as well. But, I’ve come to realize that it doesn’t help anything (just makes you feel lousy). All we can do as parents is make good decisions for our children’s todays and for their futures. We can’t worry about what has (or might have) happened. And I believe that loving our kids – making them feel secure and safe – makes a world of difference in how much it matters to them what people outside the home think.
Sending prayers in your direction!
First of all, how gorgeous is Laylee in that picture?
Secondly, I remember when I got glasses in 5th grade, what a total and utter relief it was to be able to actually be able to see.
Hang in there, and ask the second doc lots of questions! Sending hugs galore.
Oh! I know just how you feel. For me it actually was glasses. My barely two year old boy had to get glasses, and for some reason that was so hard for me. I know it’s only glasses, but he was so little and I felt just exactly how you write about feeling about Laylee.
That’s awesome that they have designer hearing aids. This may not help you, but Laylee is BEAUTIFUL, and, as you say, very intelligent, and related to YOU, so I’m sure all that will happen is you will all be glad that she can hear better, and her hearing aid will just be one of the cool things about her.
These feelings you have will definitely lessen until you don’t even notice them anymore. Probably they will disappear altogether. I wish you all the best in getting through the whole newness of everything about it.
I’ve been lurking on your site for months but have never commented. But this post…well, I had to. First of all, you are a fabulous mom – I’m inspired every time I read you blog to be more daring as a young mom myself!
My friend’s son started kindergarten this year with a brand new pair of hearing aids, and his parents were worried about what kids would say. To my knowledge, there has been no teasing. My daughter is in the same class, and I’m not sure if she even noticed the hearing aids (even though they were friends before he got them) for several weeks. And these hearing aids are red, white, and blue – hard to miss. He’s stone deaf without them but can hear fine when they’re in. It’s just part of him and I don’t think anyone really thinks about it at all.
Hearing aids may not be as common as glasses or braces, but they do serve the same general purpose, right? If you need to, I bet you could always arrange with Laylee’s teachers to go in and talk with the class about hearing aids and why she wears them so there’s no question about what they’re for. There aren’t too many kindergartners with glasses, either, you know, and by the time more kids get glasses they’ll all be so used to seeing her aids that I imagine it won’t be a big deal anymore.
Hugs and prayers for you and your family.
As a teacher, I know a lot of kids with hearing aids. It is very common for teachers to wear a clip on microphone to help these kids. I know its overwhelming but if it helps…this will be nothing new for her teachers! She is going to do great!
It’s going to be fine.
Proud Daughter of Eve says
Start watching lots of science-fiction as a family and maybe you can sell her on the idea of being a cyborg. 😉
I think you handled a tough situation very well. I know it’s hard now but I’ve been reading your blog fo a couple of years now and everything I’ve seen here tells me that you and your family will handle this and anything else that comes your way with love, faith and class.
Isn’t it wonderful parenting NOW, when they have beautiful hearing aids? I hope that because she’s so young, they’re just going to be part of her, and she won’t worry about it one little bit.
Baby Dumpling's Poppa says
I’m glad everyone is wishing you and your family the best.
Although Baby Dumpling has had too many problems other than a rash that doesn’t seem to go away, I haven’t expierenced my child having a problem. If I do I hope I remember what I tell you now.
First you need to get all the fears, frustrations, guilt and tears out. You need to have your melt down in full force. Once you’ve completed that, pick yourself up off the floor wash your face and hands. Your little girl hasn’t changed one bit since yesterday, last week or last month. She’s the same little girl. The doctor didn’t exchange her in the booth. You need to treat her the same as you’ve always done, because she and you are the same people that you were before. Try not to spoil her or over compensate for this natural fact of life. You didn’t cause this, she didn’t cause this. It’s just there. Be thankful for all the things that you have, like you said, we have technology so she can hear, you have enough money to pay for that technology. She has her whole life ahead of her and needs to know that you are the same mom that she knew last week.
My cousins were forced to wear hearing aids that did them no good (they are, to be colloquial, stone deaf and no aid or implant will ever change that) back in the 70s when they were huge boxes that hung from their chests. And why were they forced to have these things? So that when a teacher other than theirs had recess duty the teacher wouldn’t get mad at them for “ignoring” instructions. Horrid if you ask me. So that was the idea I grew up with, that hearing aids were something cruel that schools made kids wear. It was just a visible label and kinda Nazi-ish in my book.
Fast forward to the 90s when I was in interpreter training and hanging out with deaf people. Some of them had neon green and neon orange hearing aids. They were meant to be visible and I was told they were comfortable. What an improvement!
Fast forward again to yesterday when I was at the local Down syndrome parents’ group offices to drop off some stuff for their rummage sale. We got to talking about their handbook for new parents and how much personality it has. Here’s my favorite quote: Disability is a natural part of the human experience. It is! Even if you are “perfect” eventually age is gonna getcha!
That’s a long way of saying that I think Laylee is living in a good time. And you are a stupendously good mom.
Oh, and don’t be too stoic around her. You do want to be brave and positive, but what if she starts feeling worried and sad? I was 15 when I realized that I had only seen my mom cry twice and that meant that I freaked out when it happened. I know that it’s a very different situation because she is miles ahead of my Biscuit developmentally, but sometimes I just have to hold him and cry a bit. He doesn’t get scared by it and I think that’s because it’s not a weird thing he NEVER sees. Plus I told him that mommy tears have special healing powers. Not that I think you don’t show a range of emotions to your kids — my mom is just weird that way and all this made me think of that.
I closed that New Parent Guide after submitting my comment and the quote on the cover jumped out at me (and because I babble on and on in other people’s comments I have to share):
“The best and MOST BEAUTIFUL things in the world cannot be seen or even touched. They must be felt with the HEART.”
Helen Keller. Who I would guess you admire in some way, what with the name of your blog and all. 😉
I so understand what you are saying when you just wish you could pick and choose their challenges. My son is just now being diagnosed for a sensory perception disorder. So many times I would reach out to stop him from danger or from doing something or other, not hard, but you know enough to get his attention. And he scream like you were killing him. And it would frustrate me so badly. As everyone around is looking at me like I’m a child abuser. Believe me I understand that guilt.
And you know, she will have times where she feels different and her confidence wavers. Not because of her hearing loss, but because she is human. Haven’t you had those moments? She will too. But the good thing is in those moments she will have you. And you can remind her that every one is different. We’re supposed to be different. If we weren’t different then we’d never find our place, the place where we fit like no one else could.
Kate the Great says
I feel the need to send you reassurance. Kids think hearing aids are cool. I’ve had them since I was three or so, and I was teased more for my thick glasses and my red hair than I was for my hearing aids. We didn’t have hearing aids when I was a kid. I wanted pink, but they didn’t come in that color, so I got red. Today, my hearing aids are digital; the right is bright blue, and the left is bright yellow.
That microphone the teacher wears? It’s called an FM system. I had one in the fourth and fifth grades, and then for a year or two in middle school until I decided that it was too much of a hassle to carry from class to class, make sure to deliver and pick up from each teacher, and then return at the end of the day to my first period class to charge for the the next day. If she chooses to use it (and it should really be her choice; if it’s not, she won’t use it), the school system should provide her one free of charge, courtesy the ADA act.
Also, the school system should provide audiologists. My audiologists were my friends. They were all women, and part of our monthly meetings (I think they were monthly) involved them teaching me about how the ear works, the different parts of the ear, as well as giving me hearing tests and managing the upkeep/cleaning of the hearing aids themselves. These meetings were just pulling me out of class but keeping me on the school premises, in an empty classroom or in a quiet room in the library. Sometimes we met in the nurse’s office. The meetings couldn’t have lasted more than half an hour, but time is different for little kids.
Lots of years we ended up doing a presentation to my classroom. The audiologist would come in, sometimes at the teacher’s request, sometimes at mine and teach the kids the same thing she taught me privately: parts of the ear, hoow sound waves work, etc. I’d come into the school distriict’s extra facilities probably every two years to have an in-the-booth hearing test. Those have become familiar to me as well, those I’m sure I was nervous with my first too.
She should be fine on the playground. They tuck snugly behind the ear and hang by their own if she hangs upside down. She’ll take them out when she goes to sleep, when she takes a bath, or when she gets in the pool. And when she does baptisms. Oddly enough, I found having them out in the pool was interesting. Because everyone’s so close together and yelling anyway because of all the people around, and because water is a good conductor of sound waves, I always heard well in swimming lessons and during the many summer swims.
She doesn’t technically have to take them out when she sleeps; I take many a nap with them in. It’s just a little more comfortable to not have something poking your ear as it presses against a pillow. And the battery runs whether or not the hearing aid is on; it just preserves the hearing aid a little longer if you turn it off when you’re not using it. They are expensive, after all.
You’ve got my Email address if you’ve got any more questions. And my blog if you want to comment there with questions too. I’ve lived with them, and they’re just a part of every day life.
Kate the Great says
And after reading your other responses, I want to tell you that 97% of the time, I forget I have hearing aids. I talk normally with people and interact as easily as everyone else. The one thing I should stress as a parent is to teach her self-representation. Teach her to be assertive and to speak up if she needs something. If she comes home and complains about not being able to do this and this at school, ask her if she talked to the teacher about it. Did she make it clear that her teacher needs to switch off the microphone when they get into math groups so she can hear her fellow students instead of just the teacher? Or that the teacher needs to hand off the microphone to the PE coach when PE time comes and the teacher leaves? Eventually, you shouldn’t have to poke your head in about the small stuff. She should learn to do that herself. For me, without that FM system, I need to make sure I’m seated at the front of the classroom so I can read t6he teacher’s lips. Most of this has to do with school, but it can extend to work and to social life. If you don’t tell your boss that you can’t hear your work phone well, then he can’t replace it or get an extra volume booster because he doesn’t know about it.
Julie NJ says
Although its a little different, I have a 2nd grade boy who has dyslexia and an “auditory processing disorder” (both of which have only recently been diagnosed) which is not hearing loss but his BRAIN doesn’t ear sounds / discriminate (his ear nerves work, but its all screwy upstairs). He has had many struggles this year and last year (and will continue lifelong) with reading and spelling patterns. He also had multiple (16+) ear infections with eardrum ruptures and the doctors/specialists feel that he perhaps didn’t put down the patterns for sounds and it is impacting his reading etc. I don’t know about true hearing loss, but “auditory processing” issues and dyslexia go hand-in hand.
She is young, and will do fine. Likely she will KNOW the difference what she puts them in. I think that personally it would be easier for me to have him wear a hearing aid vs. not being able to help and have to tutor, and do things that will take years to show any effect while he becomes so frustrated and down on himself. He cries over his homework and having his self esteem compromised (he cries that he is dumb, stupid (which is actually a bad word in our home), and have some teachers allude that maybe he isn’t working hard and is lazy). His IQ tests and all academic testing came back high average to superior, except his spelling and auditory processing tasks. THAT is heartbreaking to see. ((hugs)) and hang in there. At least you followed your instinct and KNOW.
One good thing about this situation is that because of you Laylee has absolutely no self confidence issues about her hearing aids.
Kids are mean they will make fun of you for everything, your hair, your nose, the weight or lack of weight on your body, glasses, braces. You can not prevent those things but you give your kids confidence by reinforcing that everyone has their own unique qualities and that for no reason should she feel bad for her hair, glasses, or hearing aids as it may be.
She is a wonderful girl with wonderful parents she will be just fine.
Hang in there.
Not Too Pensive says
What other posters have pointed out is 100% true: glasses or head gear? NERD ALERT! Hearing aids? AWESOME!
The elementary school I attended was the one set aside for deaf children to attend, and I mixed with them and, well, attempted to communicate with them frequently. Now, these aren’t kids with hearing loss, we’re talking about entirely deaf.
I got to see them grow up with me, and their academic and social success was pretty much what you would expect of any other child – many played sports (it seemed that a gaggle joined the track team for some reason) and had a lot of deaf and hearing friends without too many problems.
Laylee’s going to be just fine, don’t you worry!
You are amazing. That is all.
Poor Mommy. Laylee, of course, is fine. Great doctors, great Momma.
But for Mommy, it’s pure tauma, and you did GREAT.
Leah Lefler says
You’re a GREAT mom- you found her hearing loss and you’re doing everything you need to do! It can be scary at first, but these kids do great. There’s a support group of parents of kids with hearing loss at http://www.listen-up.org/ (it’s a listserve) that’s been really helpful with generating goals for school and early intervention programs (if needed), the emotional stuff, etc. It’s been a real help to us!
*just searching google for hearing loss stuff and ran across your blog*
For my job at the library we visit the schools to promote summer reading. At one of the schools we had to use a special microphone thing for one of the kids and I’ve seen a number of kids in various places with hearing aids. It’s not that unusual. Maybe not quite the same as glasses but its not like she has an extra hand growing out of her head or anything.
Cousin Deb says
Jackson has a friend with a hearing aid. His teachers use the special microphone. He was fitted prior to kindergarten and is now finishing up first grade. It has been great. The kids are great, though perhaps curious, but he just explains why he needs it matter -of -factly and calmly. The other children accept that and move on.
When James and Jordan got their first pair of glasses they both exclaimed, “It’s a whole new world!!” at separate times. They won’t take their specs off.
It will be a whole new world for Laylee too. I will be for you too. In a very very good way. You are a great mom. I think it’s always tougher for us moms. We ladies sure like to find things to feel guilty about. There are some things we can’t control in life, but we can control our reactions to them….at least that is what I try to do.
It only takes 30 seconds to encourage your representatives and senators to co-sponsor the Hearing Aid Tax Credit –
The letter is already written for you; you just have to fill in your contact info. Hit the “eMail button” and they will automatically be sent to your Senators and Representative.
A $1000 tax credit could go a long way towards purchasing her hearing aids. My daughter’s first pair retailed at $6,000.
I just wandered through and read this post –
she’s a lucky girl (and gorgeous too).
You’ll get all your answers eventually and she will grow up well adjusted.
I know because I am brilliant.
I’m a teacher, and I just want to reassure you (even though this must completely hurt and be worrisome) that hearing aids and those “little microphones” are much more common than you think. In fact, I’ll be using one this year with a student who has a cochlear implant. My only concern is that I’ll forget to turn it off when I’m yelling at a student or when I’m saying something juicy! Laylee may be the most informed student at the school! 😉
I also had a dear friend who wore hearing aids since she was a baby. It never occurred to us that she was different, and it never held her back. She seemed perfectly calm, successful, and confident. I’m sure people made fun of her at some point, as they did me for being chubby, but I was never aware of it if it did happen. Laylee’s personality already is wired for her to be confident, and a success. There may be times she resents them, but I don’t see her letting them keep her from being just as vivacious as ever.
I’m a little late in reading this blog and I normally don’t comment, but I just wanted you to know that you seem like an incredible mother who loves her children very much!
Also, I’m a 4th year Doctor of Audiology student and will graduate in 10 months (yes, I’m counting), and if you have any questions, feel free to ask. I’ll do my best to answer. Also, don’t be concerned about asking your audiologist all your questions, there’s probably not a question you could ask that he/she hasn’t heard before.
I hope your daughter is doing well and adjusting to her hearing aids! Good luck!