Another Year, Another IEP

There are only a handful of days left until summer vacation. My little girl is graduating from the K-2 "primary center" to the big kid "intermediate center" for grades 3-5. She is eight-years-old. She is going to be in THIRD grade.

By typing these facts, I hope to cement them in my top of mind awareness. Occasionally, I catch myself thinking that she's six.

This school year has gone faster than any other period of time in my life. Months swept by in a blur, and suddenly we were gathered around the IEP table. Three professionals, my husband, and I met in what amounts to the school's supply closet. Our table was jammed in between stacks of books, discarded (mostly broken) chairs, and unused desks.

Having attended a fair number of these meetings in other school districts, I had to laugh. No comfortable conference room here. No secretary offering chilled bottled water. Our school offered only the bare essentials in room that used to be a first grade classroom before budget cutbacks furloughed it's teacher.

In spite of our surroundings, we worked as a team and created a good plan for third grade. It includes every accommodation I asked for and does a fine job documenting the highs and lows of Julia's primary school career. She will have everything she needs in the new building.

Still, I left with mixed emotions. IEP time seems to bring out ample negativity even when the meeting itself isn't contentious. Five adults sat around a table and talked about one kid's shortcomings. We glossed over the great triumphs of second grade because that stuff has such a small part in the plan. As a parent and responsible advocate, you can't go into the meeting full of pride and brag about all that your child can do. You have to talk about the places where the kid struggles. You have to bring up the less than perfect parts of the past school year. You have to voice worries about the future.

As I drove home, I wondered if I'm too hard on Julia. I recalled the number of times I said, "she's getting good grades, but..." and "she understands the concepts, but..." and worst of all, "I can't imagine her doing that..."

The morning after the IEP meeting, I got an email from the editor of Gallaudet University's annual publication, The Odyssey.  The 2013 edition has been published. It includes an article I wrote about Julia surfing. Re-reading that article helped me look at the previous morning in a different light. So many adults: parents, teachers, and therapists, have worked with Julia for years to get to where she is now. She has achieved so much, not by ignoring problems, but by identifying challenges and tackling them head on.

It remains my biggest challenge to balance my worries with the knowledge that there are no limits for my daughter. I can't ignore problem areas. I certainly can't let the school ignore problem areas. I have to guide and support and always remember that the work, Julia's work, will pay off in the end.

Spring Malfunction

Before I begin, I must admit that I've been in a terrible mood for the last three weeks. Like most Pittsburghers, I blame the weather. The weather has been terrible. We've had snow, cold, more snow, more cold. March 20th came and there was no spring, but two thirds of the family is showing spring allergy symptoms. 

So I'm not in a good mood.

This makes it harder to deal with a certain pair of Phonak Naida hearing aids that have been having intermittent failures. This pair has always done strange things. Julia has complained about them playing music (a phenomena I observed to be a series of beeps that made a musical tone lasting about three seconds), having a lot of static, and making noises when touched or bumped. Intermittent problems are difficult. Will it act up for the audiologist? Is it worth the trip? As a family, we narrowed it down to the FM boot. The aids never act up when the boot is not attached. The problems last only a few minutes. There are long periods of time when everything is fine.

We finally headed to the audiologist when our stockpile of ear mold tubing and those little foam microphone covers ran out. The audiologist gave us new FM boots in case a bad contact was causing the problem.

With the new boots, there hasn't been any static or musical beeping. Now the right aid just turns completely off. This does not make me happy.

Twice, the right hearing aid has spontaneously gone completely dead. Both times we changed the battery and everything resumed normal function. Since the right aid is still having problems with a new boot, the hearing aid will have to be sent away to be diagnosed and fixed.

Julia being without a hearing aid is one of my worst fears. She has her old brown eXtra hearing aids, but they don't sound as good as the Naidas. During the musical beeping phase, I had Julia wear one old hearing aid so I could keep the Naida home in it's drying case. She ripped the old aid out as soon as she got to school.

There are forty days of school left and I can't decide whether it would be better to hobble through with the Naida or make her suffer the eXtra. Julia is eight, so maybe I should just leave it up to her. As of this morning, she didn't know what to do either.

The sun is shining today and after a brisk 15 degree start, the temperature is supposed to "skyrocket." Spring is here along with allergy medication and hopefully improved mood and decision making skills. Maybe even reliable hearing aids. Hopefully.

Q & A with the Mom of the Blue Ear

A motivated mother can do anything when the health and well being of her child are at stake. The hearing loss community has been abuzz for months over the impressive accomplishment of one New Hampshire mom. When her son, Anthony, didn’t want to wear his blue hearing aid to school “because superheroes don’t wear blue ears”, she made one that did. Her email explaining Anthony's concerns to Marvel Comics inspired the creation of a new comic book character, The Blue Ear.

The Blue Ear poses with Hawk Eye, a superhero who uses hearing aids (left). The Blue Ear using his listening device that can "hear an ant hiccup across the United States." (right)

Anthony, now 5 years old, is the Blue Ear. His journey to super hero fame is well documented. He has a Facebook page. He has met Iron Man. So I was surprised to have the chance to talk to Anthony's mom about parenting struggles and the Blue Ear's future top secret missions.

Q&A with the Blue Ear's Mom

Many parents struggle to get their kids to wear hearing aids. Was Anthony giving you a hard time for a while or did this come out of the blue?

Anthony had been wearing a BAHA softband (bone-anchored hearing aid) on one side. It was uncomfortable for him. He got a Phonak hearing aid in bright blue about four months before this announcement about superheroes. The Phonak aid was comfortable and he was noticing a benefit from it. He wore it willingly for those four months and then decided he was done being different.

At the time, Anthony was going to school with other kids that have hearing loss. It was a big help to see other kids wearing amplification, but we were surprised for him to notice his hearing aid is different at such a young age.

How is Anthony doing now?

Anthony loves being the Blue Ear. He got to meet Iron Man. The whole thing is pretty awesome.

For school, Anthony is wearing the BAHA and the Phonak hearing aid. We find he gets the best benefit with both and that's what he needs in the educational environment. For sports and other activities, he can get by with the Phonak hearing aid. He's now using FM which is giving him an added benefit.

Anthony is noticing the benefit of these devices and that they help. We're very fortunate. I'm sure there will be more challenges as he gets older, but for now things are going well.

What can we expect from the Blue Ear (the comic book one) in the future?

Marvel has partnered with Phonak to create posters featuring the Blue Ear that will help kids feel good about wearing their hearing aids. The goal was to have these posters in every pediatric audiologist's office, but we want to take it even further. We'd like to see these posters on the bedroom wall of every superhero fan.

Marvel comic book characters have always been inspirational for Anthony. Iron Man developed his suit to save his life after a chest injury causes heart problems. Hawk Eye lost his hearing and had to wear hearing aids. These guys have challenges, but they are superheroes first. Our kids are always kids first, no matter what their challenges.

Thanks to Anthony and his mom for sharing this story with magicearkids.org and for creating this character to inspire and support all kids with hearing loss!