Sunday, May 30, 2010

Preventing swimmer's ear

One of the biggest challenges of our first summer with hearing aids was swimmer's ear.  The audiologist impressed upon me that the aids should never get wet.  I started the very day she got hearing aids, carefully drying her hair after Water Tots swim class.  Then I put her hair in a pony tail, put the hearing aids in, and we went about our day.

We got away with it for a little while before the first outer ear infection sent Julia into a screaming, crying lump on the floor.  She gave me a bunch of trouble getting the hearing aids in.  We were off to the pediatrician.

Twice that summer we had to do ear drops and leave the hearing aids out for multiple days.  I was horrified to leave her without amplification because she was still struggling to develop speech skills. 

As it turns out, hearing aid wearers in particular need to be really careful about making sure the ear is completely dry before inserting a hearing aid.  Some use a hair dryer at a safe distance.  I feel more comfortable using the corner of a soft towel to dry each ear.  Then I pay attention to the way the ear molds slide into her ear.  If the canal is still wet you can hear and feel it ever so slightly.  I'll take them back out and dry them again. 

Each summer we mix up a batch of our own homemade preventative:  equal parts white vinegar and rubbing alcohol.  Two drops of that go in each ear before bedtime on swimming days. 

After a rough start, we've been able to keep two nice healthy ear canals all summer long.  It takes a little extra work, but these two steps ensure Julia can swim and then return to comfortably wearing her hearing aids.

Sunday, May 23, 2010

Childhood hearing loss support group

A couple of weeks ago, I attended a parent forum put on by the Pennsylvania Department of Health called Investing in Family Support.  The invitation indicated that they were looking for parent's experiences and suggestions regarding the Newborn Hearing Screening Program.

This was, by far, the most interesting program I've attended.  I often feel awed by the mothers at these events.  These women have been advocating and serving on boards, some of them for more than a decade.

After a review of the Newborn Hearing Screening Program (ironic for me because Julia passed her newborn screening), the discussion moved to ways to support families of children with hearing loss.  PA is working to develop some type of formal support group.  Seven moms and a grandma had a lot of ideas about how that should work!

It was a great reminder to me of how much we need each other.  Even after getting over the initial shock and conquering a speech delay, there are new issues coming up.  It helps me to talk (or in this case write) about things as they come up.

Julia is very fortunate that we live in an area where she can go to a playgroup with two little boys that also wear hearing aids.  She might be "different" than all of the kids on our street and maybe even the only kid in her whole elementary school with magic ears, but at least she has met other children with hearing loss.  I get to talk to their moms every week. 

Many families won't often run into anyone in their same situation.  Another support system would be appreciated.  It could be like match.com for parents of deaf/hoh kids.  I would sign up.


***I have already signed up for the existing PA support group called Parent to Parent of Pennsylvania.  If you are looking for other families to talk to about physical/developmental disabilities, behavioral or mental health concerns, foster care, adoption, educational issues, or any other special need you can contact Parent to Parent through their web site or by calling (888) 727-2706.

Sunday, May 16, 2010

Mommy, I'm different....

Julia has been telling me that her hearing aids make her different. 

"Mommy, I'm different than the girls in dance class.  I have magic ears."

I went through a whole self-esteem building exercise with her on that point.  She's got a lot of things that are different about her.  She has things that are the same.  We listed lots of traits and whether they were the same or different from her dance class friends. 

I thought I'd done a pretty great job parenting on the point.

A couple of days later:  "Mommy, I'm different than the neighbor girls.  They don't have magic ears."  I let it go.

She keeps bringing up people who don't wear hearing aids and pointing out that she's "different".  I don't even know that she feels anything about it.  It is just a fact.

It's a fact and I don't have much to say.  I wonder if I should tell her how kids made fun of my glasses or my scoliosis brace.  But she's not being teased, so I figure I'll save those for another time. 

I could read that weird book by Mr. Rogers to her again.  Everyone lives on a purple planet and they're all called Paul or Pauline.  It's supposed to make you think how awful it would be if everyone were exactly the same.  I posed the question to my daughter and she thinks "that would be cool".  So much for diversity.

I don't know what to tell her.  It's a tough moment in our day when she starts with "mommy, I'm different."  It takes all I have to keep from saying, "Of course you are baby, you're way smarter than everyone else!"

Sunday, May 9, 2010

Hide and seek with hearing aids

Julia has been learning to insert her hearing aids in her own little ears.  It was going well.  Then without even thinking anything of it, I handed her both hearing aids and went downstairs to make dinner.  

Julia had just spent and hour in our big bathtub pretend swimming.  Bathing suit, snorkel, diving rings, and goggles; she had the whole deal.  Afterward, I had dried her hair and tied it up while she was still naked.  When I left her she was diligently working on her right aid.

She was supposed to finish with the hearing aids and then go put on clothing.  Thirty minutes passed as I worked on assembling tacos and making some Rice-a-roni.  I was enjoying the time as I thought she was entertaining herself.

Then I hear a soft voice, "Mommy, I can't find my magic ear."

I abandoned the Rice-a-roni to find a strangely dressed child wearing one hearing aid.  She lost a hearing aid and just wandered off to get dressed.  Ever think of looking for it before you go put on your Little Mermaid dress?

"I can't find the other one," she says.
"Where is it?"  I wanted to know.  I guess that was a dumb question.  She didn't know where it was.

I started the sort of frenzied search that never allows a person to find anything.  All the while I'm bombarding her with questions in a raised, unhappy voice.  She just sat on my cedar chest in the same place I left her when she still had two hearing aids.  She seemed unaffected by the drama that was playing out.

All kinds of thoughts went through my mind:  toilet, chewing by dog.  I wondered if she hid it on purpose.  I tried to collect myself and sat down with her.

"Tell me exactly what happened," I told her.  "Start with what happened right after you finished putting the first one in."
"I took the other one," she said while taking a deep breath, "and I threw it up in the air.  I'm very afraid it's on the ceiling fan."

For crap's sake.  If you can imagine, I really do pseudo swear even in my own mind.  I headed downstairs to call for reinforcements.

I had to flag the Dad down because he was mowing the lawn.  I explained the situation to him and he immediately began searching the bedroom with me.  He asked her to explain what had happened.  At that moment she began to show emotion.  Mom had been flipping out for 15 minutes but suddenly having to tell Dad what happened made her feel all BAD. 

"You are not ready for a slumber party," I hissed.

Then I moved the cedar chest and found the hearing aid safe and sound underneath.  Lots of deep breathing later we decided as a family that she might still have her slumber party reward if she can demonstrate responsible hearing aid care in the meantime.  Not throwing the things at the ceiling fan will be a good start.

Sunday, May 2, 2010

Motivating hearing aid independence

I decided Julia should learn to put her hearing aids in on her own.  We'd tried it just prior to getting new ear molds.  She was doing okay until the new sparkly ones were too snug and sticky for her to get in on her own.

Months later, she's turned 5.  Her ears have grown just enough to allow easy ear mold insertion.

I tied her hair up and gave her a speech about the red dot showing which one is for her right ear.  I handed her the hearing aid and put her in front of a mirror.  I explained which part of the mold lines up with which part of her ear.  I demonstrated.  I coached.

"I can't do it," she said.

She'd barely tried, essentially smashing her hearing aid at her ear in a haphazard fashion.

"You're not trying," I said calmly.

We were about 20 minutes into a task that I could do for her in 20 seconds.

"If you can't learn to do this on your own," I told her, "you're not going to be allowed to go on a slumber party with your cousin."

"I can do it!" she shouted.

Those hearing aids were in and turned on in a couple of minutes.  Each following attempt was successful and met with an excited girl screeching, "Mommy, I got to the point!  I can go on a slumber party!"

The slumber party is scheduled for May 21st.  She can do anything.  All it takes is proper motivation.