Sunday, August 29, 2010

Parent Profile: Rebecca

It's the end of August already and finally time for the first BTaC featured parent.  I first started corresponding with Rebecca when her daughter, K, was newly diagnosed.  She has agreed to be my first feature!  Rebecca has two daughters, K who just turned six and L who just turned four.  L is a typically hearing child.

Rebecca's Story

K's hearing loss was discovered at her five-year-old hearing screening almost one year ago. However, we had been through earlier hearing loss scares. She was born prematurely at 35 weeks via emergency c-section because of complications discovered late in my pregnancy. She was in the NICU for a week and failed her newborn hearing screening. She failed a second hearing screening a couple of weeks later, but she passed an auditory brainstem response test when she was two-months-old.

Then she failed an otoacoustic emissions test at nine months at which time we discovered she had a conductive loss due to fluid. She had tubes placed at 14 months, and then passed another ABR and a behavioral test when she was 15 months old. Her language exploded after the tubes were placed, and I really didn't worry about her hearing anymore.

She passed her four-year-old hearing screening also. So it was a shock (and a huge kick in the gut) to learn of her hearing loss at the age of five. Her ENT and her audiologist don't know if the loss was just missed when she was a baby/toddler, or if it has developed over time. Thus far, no cause has been found for her hearing loss. Fortunately, it seems to have stayed stable and in the mild range for the last year.

K wears two Phonak Micro Nios III hearing aids with an open-fit ear dome. She got her first aid in January and her second aid in June. We held off on getting her second aid because her left ear tested normally twice within the last year on the tones, however, our current audiologist thinks that was just bad testing. She loves her aids (they are pale pink), and they have brought her pure tone thresholds and her speech recognition thresholds into the normal range.

Initially, K was diagnosed with a mild unilateral hearing loss, so I was on the fence about aiding her. However, once a bilateral loss was suspected, I wanted to aid her immediately, especially as she seemed to struggle due to some conductive loss from colds and ear infections on top of her sensorineural loss.

My husband was initially opposed to aiding her because he did not think a mild unilateral loss was that big of a deal. He was also worried that she would be teased by other children and stared at by adults. However, I wanted to make sure she could hear as well as possible given the current hearing technology.

And I'm so glad we did aid her. Our audiologist thinks that K is one of those kids who could probably do fine or even well if we had not discovered her loss because it is mild and she compensates for it very well. I don't know if that's true, but I do know that having aids makes it so much easier for her. And while she developed language normally and on time, I want her to hear every sound to keep that language and speech development going full speed ahead. I also wanted to aid her so that she would get used to wearing hearing aids early in life, especially if her loss progresses.

Fortunately, no child has teased her as a far as I know, and when they ask about her aids, she just tells them they help her hear better - just the simple facts. Her social calendar is very full, and I'm thrilled to report that she did great in kindergarten and is reading well above grade level.

This year has been such a learning experience for me. While I wish I didn't have to learn all of the stuff I have learned about hearing loss and advocating for my child, I feel much more confident about my ability to handle this situation now than I did even a few months ago. I have met several children and adults whose hearing loss is much worse than K, and they're doing great with either their hearing aids or their cochlear implants. I have also met some signing Deaf adults who are leading very happy, productive lives.

K loves to meet kids who wear hearing aids or cochlear implants. Should she lose all of her hearing, I'm certain we would go the cochlear implant route because she has grown up in a hearing world and loves sound.

The hardest thing for me to handle is the uncertainty of the situation. I'm a planner, and it's hard to plan for hearing loss when you don't know if it will progress or not. So, I'm trying to take it one day at a time, one appointment at a time. It's tough, but I'm getting better at it.

Thanks so much Rebecca!  And good luck to K starting first grade!  If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at bigteethclouds at gmail dot com.

Sunday, August 22, 2010

A celebrity sighting or just a trip to the ENT?

We're very fortunate to have a host of extraordinary professionals here in the greater Pittsburgh area.  One of these is Julia's Ear, Nose and Throat specialist, Dr. C.  He is a rock star.

When Julia's hearing loss was discovered, the audiologist gave me a list of things to do.  Among them was to see this specific ENT.  No other doctor would do.

The moms I met at various functions would ask upon meeting me, "who is your ENT?"  I would answer and then they'd spend fifteen minutes gushing about Dr. C.  I've come to understand that he's the man when it comes to cochlear implant surgery in Pittsburgh.

Fortunately, we see him just to check for general ear health.  He takes a peek every six months to make sure there's not a lot of ear wax gumming up the works.  We talk about how many ear infections Julia has had.  He's soft spoken and reassuring.

I didn't realize that I'd been assimilated into the Dr. C. fan club until the moment I saw him walking through the Orlando International Airport.  "There's Dr. C.!" I exclaimed with genuine enthusiasm.

My husband made fun of me.  He thought seeing Matt Damon would probably have garnered the same response.

After more than two years, these people are heroes in our world.  I mark the passage of time by appointments with the audiologist and ENT.  Regular reassurance from them keeps me from worrying too much.

So it was kind of like spotting a celebrity.  Only I got to see him again less than a month later.  And when we get together we mostly talk about ear wax.

Matt Damon isn't nearly so useful.

Sunday, August 15, 2010

Stress and the hard of hearing child

The AG Bell session titled, I Can't, I Won't, I Don't Want To, peaked my interest.  It's tough to distinguish whether the type of childhood anxiety we experience here at home is from hearing loss or perhaps just the manifestation of my DNA.  I was a high stress kid.  Julia has moments.  Either way, the stress is there.

I detect stress in her on days when she's been playing with her peers without me.  I try not to seem overly self-important here, but I do mom things that help her a great deal.  I use those deep knee bends to get to her level and speak at a rate that is easy to understand.  I give her plenty of time to talk.  I listen carefully to what she says.  I worry that I've created an alternate reality where communication is different than it will be during those full days of kindergarten.

I worry because I can tell when she's spent a whole day with kids.  Her emotions are on a hair trigger.  She seems more tired.  She's more apt to cry at a transition time or jump to a conclusion that leads to a meltdown.  She has stress.

So I was tuned in to this subject in Orlando.  I was hopeful that there would be answers.  As with so many parenting things, there are no absolutes.

The workshop pointed out that the difference between detection and understanding.  We may think our child is doing well because they detect a conversation.  They may not be fully understanding the dialog.  For this we are to give them "communication repair strategies".  An example would be to have the child indicate, "I don't understand" or to have them ask for clarification.

Two months after taking in this information, I've yet to put any "communication repair strategies" into practice.  I sometimes ask, "did you understand?  did you hear?"  I'm at a loss as to transferring this to a self-advocacy goal.  I don't know how to make her ask for clarification.

The presenters also suggested "listening breaks".  They mentioned some kids that like to take their amplification off for a few hours after school.  They said a child might benefit from quiet time in a small space where they can just relax.

The best I've done is to incorporate Julia's favorite play, our one on one time with Barbie dolls, into most days.  She has no interest in removing her hearing aids.  She has no interest in ever being alone.  She never wants to be quiet herself and would always engage me in conversation.  I do find that a good hour of playing with her and her dolls does relax her.  So we just have weird listening breaks.

Finally, they discussed previewing and preteaching as stress reducing tools.  I've been working on this in different situations.  We talk through who is going to be at an event and what we'll do.  I've also tried to give her some coping strategies for when she feels angry or sad.  We talk about the appropriate responses.

All of these tactics are trial and error endeavors for each child.  I've already crossed those completely quiet listening breaks off of my list.  I'm still not finding a substantial improvement with the other stuff. 

I'm left to wonder if I'm capable of teaching someone to manage stress.  I can barely handle my own.  Do you have any suggestions for conquering kid stress?

Sunday, August 1, 2010

AG Bell Session: Working Memory

While I was waiting for an AG Bell session on social media to begin, I overheard some people talking about the session next door.  It had drawn a standing-room-only crowd.  No wonder there were only a handful of people assembled to talk about twittering.

The next day, people were still abuzz with that popular session.  It was about "working memory".  Working memory is the ability to manipulate and access information in short-term memory.  The implication is that children with hearing loss have difficulties with their working memory.

A second working memory session by a different professional was offered the next day.  I attended with a smaller crowd, presumably the overflow that couldn't fit in the first one.  A study was presented where typically hearing children and children with varying levels of hearing loss were put through a program to increase their working memory.  Their language skills were tested before and after.  Improved working memory is thought to spur language development.

The researcher found what she deemed to be statistically significant improvement in the kids with hearing loss.  The kids improved their language skills by spending time on a touch screen computer duplicating patterns of flashing colors.  Remembering patterns enhances working memory.  It is thought that the benefits disappear as soon as the practice ends.

The experts attempt to draw a huge distinction between short-term memory and working memory.  They theorize kids with hearing loss spend a lot of energy to understand speech and have less brain power left for working memory.  The miserably boring task of replicating these flashing color patterns could help.

The concept is interesting, but there isn't any fix for use in the home yet.  The session served to bring me up to speed on the buzz words.  It can be difficult in our house learning new friends' names and learning new words.  I don't know if it's a working memory problem or not, but it's interesting to learn about this research.