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Friday, May 3, 2013

The story of Maya and her hearing aids continued.

Getting hearing aids is a multi-step process.  First the referral, then the testing and the retesting.  Then the ENT appointment for medical clearance, the removal of some ear wax and you are on your way to...yet more appointments.
 
My sarcasm isn't really warranted here.  We have had really good care and have worked with some truly lovely people.  The problem is that there are aren't appointments for Sandi or myself, but for our spirited, occasionally wild child, who has had to endure many steps to meet an eventual goal she isn't all that psyched about:  having to wear hearing aids. 
 
We never really know what to expect from Maya.  Often she is easy going, content, along for the ride.  Other times she sets her feet down firmly, as though in quick-dry cement, and her iron will is unmovable. 
 
As parents, we often hope for the former and plan for the latter.
 
Once we obtained medical clearance, it was on to see Michelle at the Hearing Center at EMMC (we LOVE Michelle - partly because she is awesome and partly because she adores Maya).  We also really appreciated Dawn, the audiologist who did all her hearing tests.  She is the one that worked with the Maya in the reliable B.F. Skinner operant conditioning model:  M&Ms at the push of a button each time she heard a sound.  Brilliant.
 
The first of the two-step process to getting hearing aids is to have ear molds made.  This means squirting a silicone-like substance into the ear, letting is harden (in mere minutes) and then pulling it out.  Luckily, Maya thought this was pretty fun.  What kid wouldn't like having what looks like toothpaste squirted in her ear?
 
She kept running around the office, yelling, "I CAN'T HEAR YOU!!!" getting louder and louder as the adults chuckled at her.
 Once dry, the ear mold is gently pulled from the ear by the string on the inside (reminicent of a tampon if you can parden the analogy)  and then sent away to have molds made to fit Maya's ears exactly.  She got to pink the color of her molds.  Can you guess what she picked? 
A few weeks ago when the girls and I were hiking on Mackworth Island, Maya was commenting to me about how good a "see-er" she is.  "Ella told me my eyes are so good because my hearing is not so good.  But soon I will have hearing aids to help me hear better.  Too bad they don't have seeing aids for people who can't see so well."  When I stopped laughing and marveling at the world through a child's eyes, I informed her that they have such things and they are called glasses.

Finally, Monday it was time for the real deal.  That morning took her doll Kaylee, the one with her very own hearing aids, to preschool that day to introduce the idea to her classmates.    Then I picked her up early and Sandi met us for the hour and half appointment to fit and test the hearing aids.  As soon as we put them in, she began to yell accusingly at us, "IT IS TOO LOUD!!" which was hard to decipher if it actually was too loud or if enough people had said this to her ("When she gets her hearing aids I bet everything will seem really loud to her!"). 

Regardless of the reason, Michelle turned them down and we took her in the hearing booth to test their efficacy.  There were too many sounds she couldn't hear and they needed to be turned up.  If they were at the level Maya preferred (the hearing level she is accustomed to) there was really no amplification at all.  After lots of tweaking of low sounds and high sounds and then the program was set for her hearing aids.  At this age, they disable the function that allows her to turn them up and down herself.  (Mercy.)

Maya is really comfortable with the people at the hearing center.  In a really sweet and sort of unruly way.  She sits in their laps, tells them she wants to go home with them, gives them hugs, but then pushes their limits and tests them the way she does with us.  Part of the double edged sword here is that they think she is hilarious and laugh at her silliness which is so cute but then she amps it up and we have a hard time reigning her in. 
 
I suppose it is hard not to laugh when a five-year-old spontaneously breaks into song, singing:
"That's the way...uh-huh, uh-huh, I like it, uh-huh, uh-huh.  That's the way...uh-huh, uh-huh, I like it, uh-huh, uh-huh." 


Maya is using the Phonak Dalia Pink which sits behind the ear.  She loves her pink and purple swirled ear molds with light pink hearing aids.  AND they come with stickers to decorate them.
By the end of the appointment, Sandi had to leave and I was trying to sign paperwork and Maya had had enough.  She was being obstinate and mouthy and saying to me, "I want these out!!!  All I can hear is shhh, shhh, shhh!" She was hearing the pages of the book as the turned them. I felt a sad sympathy for all that she had been unable to hear until now, especially knowing how hard it was going to be now that she could hear everything.

Michelle told me to call if Maya continued to complain that things were too loud and we go back in two weeks to follow-up. 

Here is what is surprising:  although she craves attention, Maya does not like the attention her hearing aids bring her.  She likes to show them off in the snazzy case but not in her ears.  We left the hearing center and headed for the park to meet Emilie who had Ella with her kids for me.  Maya refused to keep them in her ears and only wanted to show them in the case. She didn't want to show Tia or any of the Carvers when we headed for Beals the next day.  Ella's been telling all her friends about Maya's hearing aids at school.  They all want to see them and Maya doesn't want to show them.  I've tried to help set boundaries with the curious kids and to save Maya the (surprisingly) unwanted attention, but curious kids are rather relentless it turns out.


We are aware that this is a major adjustment and we want to give Maya lots of leeway.  But we have to be careful, too.  Maya has said things like, "Maybe I'll wear them and maybe I won't."  We don't want to give this self-directed child a sense that these hearing aids are optional.  We gave her a reward for wearing them during the morning session of preschool Wednesday.  Three and a half hours in a room full of kids.  That is a big deal.  Her teachers are amazing and I was so comforted to leave her in their care as she makes this big transition.

Then yesterday we established the hours for her to wear them.  Part way through the morning as we ran errands she said, "Wow! I forgot I was wearing my hearing aids!"  On the drive home after the errands, gymnastics and volunteering at Ella's school (when it was time that she could take them off), she said, "I'm going to take these off now."  Then she forgot.  And she forgot a few hours later too.  Straight through Ella's softball game until she climbed into the shower at nearly 8 pm, she forgot.  She wore them for 12 hours!!!!

It feels good to not shout so much. It feels good not to be so frustrated when Maya doesn't respond to me, especially in the school parking lot with cars moving every which way.  It feels good to know that Maya has the perfect hair to hide her hearing aids so she can choose to show them or not.  It feels good that in the past two days we saw two strangers wearing hearing aids (one adult, one child). It feels good that Maya is old enough to understand that she can now hear like we can and that it will take time to get used to. 

I told her that I wear an insulin pump and she wears hearing aids and that is pretty cool.

1 comment:

Unknown said...

Hearing loss can be of a recoverable or a permanent nature gladys

 
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