Sunday, March 28, 2010

Classroom strategies for mild/moderate hearing loss

IEP time came for us again in February.  Having moved from one county to another and then back again, it seems like a lot of meetings for one little kid.  Now we're in our forever home and have written the all important IEP that will be used for her transition to kindergarten.

There are only two goals this time.  Speech has been conquered and now the task is to make sure she continues to grow as a listener.  The first goal is to maintain her skills.  The second is about following directions.  This IEP will hopefully keep her from falling behind because of her hearing loss.

Julia's Teacher of the Deaf and Hard of Hearing wrote a great list of strategies needed to achieve these goals.  They are:
  • Minimize background noise
  • Use preferential seating in a large group with appropriate access to peers and teacher
  • In small groups and one-on-one situations seat Julia in front of or next to the speaker
  • Utilize auditory sandwich techniques (presenting information verbally, pausing to wait for a response, giving a visual clue, then repeating verbal information)
  • Provide extra time for processing
  • Provide acoustic highlighting techniques to enhance the audibility of spoken language (whispering or emphasizing a specific pitch)
  • Use rephrasing and repetition to supplement verbal instruction
  • Model appropriate language
  • Expand and extend Julia's spontaneous utterances
  • Speak at normal conversational levels at close range
  • Identify who is speaking and repeat/paraphrase information stated by her peers
  • Use a varied vocabulary with Julia to convey a variety of concepts
  • Give breaks from listening
  • Encourage Julia to use clarification as needed and begin to self-advocate
  • Implement the proper use of an FM system
We've come so far, but there's still a lot to be done.  Like me, Julia has significant difficulty understanding other kids. Most recently she complained that with her FM she could only hear her dance teacher and not her friends.  We're continuing to learn and adapt as a family with the above list of strategies as our guide.

Tuesday, March 23, 2010

I won sponsorship from Prilosec OTC!

For the past few weeks I've been asking all of my friends, family, and blog followers to vote for me to win sponsorship from Prilosec OTC to attend the AG Bell 2010 Biennial Conference.   I'd been carrying this postcard advertisement around for a few months before the sponsorship opportunity came up.  I'm especially interested in sessions dealing with advocacy and policy for children with hearing loss.

The announcement was made Friday (Julia's 5th birthday).  I am officially the Official Prilosec OTC Childhood Hearing Advocate.  I'm going to the big convention!

Though I'm decidedly camera shy after my appearance on local TV and various embarrassing home movies, I'm going to have a blog on Prilosec OTC's web site where I'll post videos.  That starts April 1st. 

Thanks to all of you that voted for me!

Sunday, March 21, 2010

Part Three: Paying for Hearing Aids

Today's post is the final part of the series based on the research paper, Are 1 Million Dependents with Hearing Loss in American Being Left Behind?  By Sergei Kochkin, PhD; William Luxford, MD; Jerry L. Northern, PhD; Pam Mason, MED; and Ann Marie Tharpe, Phd.  The first two posts covered denial and stigma as reasons given by parents who choose not to aid their children.

The financial burden of hearing aids is, to me, the most understandable reason for letting a child go without hearing aids.  Private insurance does not cover hearing aids.   In most states, the burden falls to parents to pay for their child's aids.

There are some alternatives to insurance that will help with the cost.  The following bullet points with links to sources of funding are copied directly from the American Society for Deaf Children:

If all else fails and you can't afford hearing aids for your child, look into having a sound field installed in the classroom.  Section 504 of the Americans with Disabilities Act requires schools to provide assistive technology.

Friday, March 19, 2010

Silent Mommy

The whole family came down with a mild cold this week.  Julia had it first.  By the time Tim got it I was pretty sure the thing was unavoidable.  I'm about four days in now.

Sinus headaches, joint pain, and a runny nose are annoying enough when you're chasing an energetic youngster around.  I had all that and I lost my voice.  I spent the day yesterday ranging from decreased volume and squeaking to nothing but a faint whisper.

Julia couldn't hear me.

I'm used to repeating myself and talking louder than normal.  I even spell things sometimes which amazes me because a preschooler shouldn't be helped by that kind of thing.  I found myself trapped with no extra volume and no vocal stamina to repeat each phrase until she got it.

I explained the situation several times.  She didn't get it.  I think it was the most miserable day we've had together since the stress-induced tantrums just after she turned four.  She didn't kick or bite me, but she seemed injured because I couldn't hold up my end of the conversation.  That hurts worse than being bitten.  By late afternoon she was fed up with me.

Dad had to read the nighttime stories and Julia said her own prayers.  "Help Mommy get over her cold," she said.  Please do.

Sunday, March 14, 2010

Part Two: Hearing Aid Stigma

Today's post is the second of a three part series based on the research paper, Are 1 Million Dependents with Hearing Loss in American Being Left Behind?  By Sergei Kochkin, PhD; William Luxford, MD; Jerry L. Northern, PhD; Pam Mason, MED; and Ann Marie Tharpe, Phd.  Last Sunday's post, the first of the series, covered denial.

According to the research paper, "about a third of parents" said their own embarrassment or their child's embarrassment kept them from pursuing hearing aids for their child.  Written responses from parents articulated the feeling that hearing aids are "really only for old people" and hearing aids are "ugly" and "too noticeable".

There is a stigma associated with wearing hearing aids.  People that notice the aids assume my daughter is completely deaf.  I've witnessed well meaning adults that slow their speech or dumb things down when they're presented with a kid wearing hearing aids.  These misunderstandings are easy to remedy.  A person only needs to talk to Julia for a few minutes to realize she is neither deaf nor slow. 

I know that there might be teasing because of Julia's hearing aids.  There might also be teasing because she has curly hair or likes to wear dresses.  Kids pick on other kids.  All we can do as parents is to give our children strategies to deal with criticism.  It's not a great strategy to ignore an educationally handicapping disability so bullies have one less thing to tease about.

A better response is to educate your family and your child's classmates about hearing aids.  Give your child the confidence to explain their hearing instruments in a matter-of-fact way.  Let them know that they are in no way limited by their amplification. 

Remember that doing nothing about even a mild hearing loss will adversely affect your child's performance in school.  That has its own stigma to worry about.

Sunday, March 7, 2010

Part One: Hearing Loss Denial

Today's post is the first in a three part series based on the research paper, Are 1 Million Dependents with Hearing Loss in American Being Left Behind?  By Sergei Kochkin, PhD; William Luxford, MD; Jerry L. Northern, PhD; Pam Mason, MED; and Ann Marie Tharpe, Phd.

The study seeks to shed light on why 1.2 million dependent children in the United States have hearing loss but do not use amplification.  A survey was sent out to parents of hearing impaired children and the research paper highlighted their responses.  It's a worthwhile read for anyone interested in advocacy for young children with hearing loss.

The most popular reason for not aiding a child (in this study) is denial.  Especially parents faced with a mild hearing loss might feel that the problem is not that bad.  In many cases, this feeling is echoed by professionals.  Audiologists, family physicians, and pediatricians were reported to advise parents that hearing aids were not needed or wouldn't work for their child.

These same parents reported that their children experience a host of problems including speech delays.  These kids turn up the TV to levels that are uncomfortable to other members of the family.   They can't hear normal speech.  The experts writing this study concluded "a hearing loss below 35 dB in the better ear is considered 'mild'.  Yet we know that, for a child in a classroom, this is worse than stuffing their fingers in their ears."

Even with a higher degree of hearing loss, I have experienced denial.  I know that Julia can hear without her aids.  She was even learning to talk.  I wondered before her ABR, is she just ignoring us?  It's easy to think that a child can hear when they want to or when it's important.  It's important to have the perspective of professionals to help decide it hearing aids are necessary.

In many parts of the country, the quality of medical care varies.  Here in Pittsburgh we have pediatric audiologists and the best in ENTs and pediatricians.  Even with what I consider to be a wealth of great medical resources, I've already ditched a pediatrician because of my child's hearing loss.  I was asked on at least four occasions by this pediatrician, "is that a cochlear implant?" of my child's hearing aids.  I thought it was strange that she wouldn't know the first time.  But on each subsequent visit, after I told her, she still didn't know.  I changed doctors and eventually switched practices because the doctors were so ill informed about her condition.

Doctors are just people.  They might not know much about pediatric hearing loss.  An audiologist that works almost exclusively with adults is not going to give you the kind of insight one trained to work with kids will.  They may not even have the smaller sizes of inserts and proper equipment.  As a parent of a child with any level of hearing loss, you have to advocate for your child.  If their vision was blurry you would get them eyeglasses.  There's no reason to let them miss 50% of conversational speech if hearing aids could help (this would be caused by a mild hearing loss with a pure tone average of 35 dB).

My experience is with only one child with moderate-to-severe hearing loss.  I can't insist that every child with hearing loss needs hearing aids, but many do and they aren't getting them.  At the very least, be sure you seek out professionals trained in diagnosing pediatric hearing problems so you can achieve the best outcome for your child.

Here are some other articles to consider about "minimal" hearing loss:  Even Minimal, Undetected Hearing Loss Hurts Academic Performance and Mild and Unilateral Hearing Loss.  Next Sunday's post will cover the stigma of hearing aids as a barrier to providing amplification for children.

Friday, March 5, 2010

This one's all about a turd

After finishing up an IEP meeting, I asked Julia if she needed to go to the bathroom before we headed home.  She thought that was a good idea.  We headed off to the elementary school bathroom.

We were in the fifth grade wing of the building.  A few 12-year-old girls were in and out during our time in the toilet.  They got to hear a wonderful conversation.

"A turd just fell outta my bum, mama.  A turd!"
"Shouldn't you wipe then?" I ask.

There was some more back and forth on this issue.  She was insistent that a bodily function had just occurred but lives in some alternate reality where no further action is required.  I was aware we had an audience and wanted to go home.  I let it slide and mused that my mother of the year certificate is probably in the mail as we walked back to the meeting room.

When we get back, Julia's hearing impaired teacher asks, "Did you find the bathroom Julia?"

There is no response.  The child is clearly tired.

"Are you just pooped?" is her next question.
My daughter exclaimed, "a little turd fell out!"

At this point the teacher gets down to Julia's level.  I am mortified that this is the moment when another adult has to explain to my child that it is inappropriate to announce what just happened in the bathroom in such detail.

"It's an expression," the teacher tells her.  "Pooped means you feel tired!"

It may not have been the best time to introduce that particular expression.  "Are you pooped" and "did you poop" are rather close phrases.  Combined with the proximity to an actual bathroom trip this is probably what motivated the unabashed disclosure.  Or it could be that Julia was just really hung up on that turd.

Apparently the teacher and another attendee of our IEP meeting had just been having some sort of conversation about the difficulties children with hearing loss face.  "This is a perfect example," the teacher exclaimed as I turned fifteen shades of red.  "This is perfect for your blog!"

Oh the things I go through for this blog!