Monday, July 2, 2012

Day 5

Today is Day 5 of Li'l Empress's soft band
bone conduction hearing aid trial.

I know. No warning, no updates along the way to let you know what was coming. Just those little teasers that leaked out at the end of last week. Bad blogger. In my defense, our sweet audiologist kind of sprung it on me quite suddenly at Li'l Empress's 6 month hearing check. The day before Shaggy's big huge graduation party. That rolled right into a big huge June Birthday/Father's Day party. That rolled into two days of Momma Coma while I attempted to recover from the huge adrenaline high I'd been running on for a week or more.

And then it was time for the appointment to start the trial. Whew. I'm still not totally recovered from all of it, I suspect.


Li'l Empress has been wearing the soft band for short periods of time for the last four days. We are definitely noticing some things during the trial period that are noteworthy and I'd LOVE to hear from other folks who have done this with their kiddoes to help me understand and gage our experiences.

The most noticeable thing is the funny, almost robot-like way she speaks for the first few minutes it is on her head.  I know it's that she is hearing herself in a new way for the first time in her little life but it provides GREAT comic relief around here. Which is a good thing cuz the other things we are noticing are well, not as much fun.

The other most noticeable thing is how tired she is.  Now, we know that our household has been very busy since mid-May and it's likely catching up to her in many ways. But we have noticed a marked change in the last 4 days - she doesn't fight nap time at all. She is very cranky around 1 every day and falls asleep quite easily. And bedtime seems to be a welcome relief to her for these past four nights. I totally understand why and we've purposely structured our days since Thursday to make sure she is home for nap time and able to "crash" during the day with books or a kid show as needed. I'm so glad our Miss Laura (the audiologist) told us in advance to expect this.

Finally, the other thing we've noticed is that she has definitely been advocating for herself by doing things like relying on visual cues, asking to have the tv turned up or down, and learning how to ask for a break from the band when she's feeling "done." This has come after some serious melt-downs (particularly the first two days) but she's really improving in just the last 24 hours with her choice to speak up for help as opposed to breaking down in a puddle of tears. That emotional "limit" seems to be expanding. That's a very good thing now, but man, Thursday and Friday and most of Saturday were challenging for The Boss and I to manage and talk through with her.

We are loving how she is testing things out for herself. It's so fun to see her testing and questioning and trying to learn for herself. For example, she likes plugging up her hearing ear with her finger and asking us to talk to her to see if she can hear us.  She's testing volumes all the time. Which is kinda cute but also kinda loud on occasion. I'm okay with that, most of the time. We've also noticed that she loves blocking the little microphone on the conductor and making the feedback go crazy. It makes her giggle and us cringe. Which I know she loves.

I've had quite a few folks ask why we are doing this, if her hearing ear is working so well for her. Well, that is a valid question that I've asked often myself. According to her speech and language development, she is pretty "on target," with the exception of a stutter that seems to be lingering longer than is stage/age appropriate. And she is eligible for speech and language services, along with hearing services once she starts school in the fall. But only having one hearing ear can and already sometimes does affect her learning capabilities. The goal of this trial and eventually the permanent use of the aide is to enhance and boost any way we can her capabilities to catch all the learning opportunities in school and daily life. Her IEP stipulates that she have an FM system on her desk at school. The FM system will train her to and give her access to the "important noises" in the classroom - the teacher's directives and instructions that she needs to succeed in her academics. But it will not AMPLIFY the noises around her.

That's where this bone conductor hearing aid comes in. It amplifies all the noises around her by adding sound to both ears. The tiny conductor takes in the noises, turns them into vibrations that travel through the tab on the band, stimulating the mastoid process, and sending the vibrations to the cochlea. We have known for a long, long time (remember the tests she had done when she was really little?) that her right ear hearing was excellent on the inside. Everything that goes from her right cochlea to her brain handles sound and stimulation really, really well!

Amplifiying the noise will allow her to catch other noises such as classmates' input, announcements from the PA system, and other background noises that are regularly missing or at least muffled for her without the aide. This will be particularly important when traveling outside of her home-base classroom. I'm anticipating that it might be a bit of a mixed bag of support when in the gym or the cafeteria, as we've already see that she taps out a bit when all 7 of us are hanging out and we're not being mindful of the expanded experience her aide is creating. Basically, the hearing aid will open up the sound field for her in ways that the FM system cannot.

In the coming days, I'll be sharing more as we are learning. And I'd love to hear from you! Have you been through this with your kiddoes? What insight or observations can you share? Are you looking at a trial like this for your child's future? What questions might you have? I'd love to get a conversation going - this is something that I learned a lot about from other BTDT parents before we even sat down with our audiologists - I'd love to share that with others and make the conversation beneficial to all who want it!


Aus said...

Never had to do this with a child - but have experienced it myself! Lil E is simply overwhelmed by the input. When I got my first set of hearing aids I could only go a couple hours with them on before I hit overload. Now as my hearing continues to degrade and every couple or 3 years I need to upgrade my aids I can recover from the amount of added input more quickly - but there is still a time lag.

She'll get there - we all adjust to the amount of sensory input we recieve every day - but until her brain learns to handle the overload you can expect her to 1) fatigue quickly - you've seen that, 2) frustrate easily - you've seen that too, 3) find joy in unexpeted ways - you've even seen a little of that - and will continue to see more. 4) freak out moments when she hears something uncomfortable for the first time (a car crash etc) - and finally 5) a little more freak out after the adjustment period passes but her battery fails - she'll be hungry for that sensory input and you might see shutdown on her part until the battery is replaced!

It'll come - and at the end it'll be great - tell her I told her "hugs and hang in there lil E - it's worth it!"

prayers - aus and co,

Theressa Putland said...

My daughter has a bone conductor hearing aid. Both the soft band type and one with a stronger microphone that clips onto her shirt. With testing she was 45 - 50 decibel hearing loss without it. With it she is in normal hearing range - the catch up in her speech has been wonderful. There's pics of her on my blog.
It will make a big difference.

Reena said...

My daughter was 2-1/2 and has bilateral hearing loss. The BAHA was the first hearing aid she received.

Her little face lit up like a Christmas tree when the audiologist put it on her. She wore it all day-- but was very ready to take it off at the end of the day. The next morning, as soon as she would get up, she would yell "MOMMY! Mommy!" while pointing at her ear until I put it on her.