Sunday, January 31, 2010

To aid or not to aid?

At the time of Julia's diagnosis, I was thrilled to know that she would get hearing aids and intense speech therapy to overcome the speech and language delay caused by her hearing loss.

She wanted to hear and gave us little trouble wearing her hearing aids. The devices quickly became a part of daily routines. She frequently talks about how her "magic ears" help her because she can't hear well with her ears "plain".

To listen to her sing "Under the Sea", puts a lump in my throat every time. Her constant talking is something that wouldn't have happened without the aids. I know that assistive technology was the right thing for our family without any doubt.

Other families come to a different conclusion. From a similar background of two hearing parents can come a child with mild/moderate hearing loss that is unaided. This is something I struggle to understand. These are not kids that will learn sign language and enter into Deaf culture. They will have a "normal" childhood except for a diminished ability to hear. It seems they get no assistance, as if they're near sighted and can never wear eyeglasses.

The child could be very adverse to the hearing aids. I'm sure they're not comfortable. Some cultures have objections or shame. The financial burden is a prohibitive factor in some states, although cost is no excuse here in PA. If there are other reasons I'm missing, please let me know in the comments.

Readily available research supports consistent appropriate amplification. The Hearing Loss Resource Center reports:

Also, despite the terms "mild" and "moderate," these levels of hearing loss can have a significant impact on a child's ability to communicate. Research by Dr. Matkin and colleagues, for instance, indicates that "a child with an unaided "mild" hearing loss (pure tone average of 35db) misses 50% of conversational speech and lags two years behind his peers in language ability when he enters kindergarten. An unaided child with a 50 db loss (usually labeled moderate hearing loss) can miss 80% to 100% of the speech signal." (from Knowing the Ropes, 1996).

"Two years behind" and "misses 50% of conversational speech" had us expediting the arrival of our daughter's hearing aids any way we could.

We've been greatly rewarded as a family by the choice we made for our child. Instantly, I had a 3-year-old that would stop and turned around when I called her name. I realized she hadn't been misbehaving, she hadn't heard me. I believe behavioral problems would have increased as her time without amplification continued.

I cherish the conversations we have and I love her hearing aids. She loves hearing. Though I never thought of this as much of a choice, for us, aiding was the right one.

Thursday, January 21, 2010

Developing a fire safety plan

Julia has a multi-disciplinary evaluation every year as part of her services she receives from the county for her hearing loss. There are all kind of questions for her and me during a two hour visit from her certified teacher of the deaf. This time it revealed little in the way of deficiencies which is wonderful.

The teacher did surprise me by asking Julia what she should do in a fire. I think about what we'd do in a fire all of the time. I am a constant worrier. I've been thinking through how I would scoop up my baby and flee the house for the past four years.

I've talked about school fire drills with Julia. I've told her that the smoke alarm means that we should leave the house. We leave the house unless it goes off when mommy is cooking and I tell her it's a false alarm. She surely thinks that the annoying beeps happen only so I'll go and swat at the ceiling with a dish towel.

But we had to answer this question and we weren't prepared. My daughter, always innovative in her responses, replied that she would put out the fire. Then I corrected her by saying that she should find mommy. I took a moment and realized that we have no escape plan and we would all die of smoke inhalation.

We've moved into our first house where we can be in separate rooms and not even be heard to talk to one another. We're going to need to have a fire drill. I'm going to have to train her to leave the house and meet me at the mailbox. I can't rely on my own ability to find her and get her to safety.

It scares me that this snuck up on me so quickly. Here she is almost five. She could be that kid that goes and hides in a closet where we couldn't get to her in time. My worrying brain is in overdrive.

I have some work to do. We need to have one of those family meetings. We need to plan on getting ourselves out of the house and not stopping for Barbie dolls or even the poor dog. Hopefully, next time she's asked my Julia will know that she's not supposed to play hero firegirl.

Sunday, January 17, 2010

Reading to supplement hearing

Julia is on a break from preschool. She went to the first school for a whole year. We moved and she went to a second preschool for a half year. A third preschool was not something I was interested in doing. She gets a two hour hearing impaired play group once a week and has her dance classes.

Other than that it's the school of mommy.

Tim thought it would be great for an added method of communication if she could read. Julia thinks it would be great if she could read. I know how to read.

I purchased a reading program on Amazon. Teach Your Child to Read in 100 Easy Lessons requires a bit of reading on the part of the parent before beginning. The lessons are short and by building each day on the skills of the previous lesson, they are pretty easy.

Years of speech therapy are paying dividends in the little tasks of our reading lessons. Julia has been associating letters with sounds during intense speech therapy. She already knows a lot of sounds. She has the ability to listen to herself sounding out a word and easily connect it to the printed word. We're thrilled to have this strength that the past years of hard work have given our daughter.

The lessons have also shown a great weakness in rhyming. She simply isn't getting it. Perhaps the speech therapy has caused her to connect words by their beginning sounds. It's been a rough couple of weeks getting her to listen to the ending sounds.

I have no way of knowing whether our troubles are in any way related to hearing loss. I am glad that we've started early building reading skills. I look forward to supplementing her hearing with printed words. Someday she'll be able to watch her favorite movies with closed captioning if she chooses. She'll read the lyrics of a song and see the names of roads on the GPS. She'll know that even though it sounds like "Ghost Mustard", it truly is "Ghost Busters" they're singing.

Reading will give her an extra tool to use in decoding the world.

Sunday, January 10, 2010

Guidance from adults with hearing loss

Months ago when my blog found some focus in Sunday posts about hearing loss, I was mostly interested in reading other parent blogs. I liked reading about the same sort of thing I was writing: speech therapy progress reports, hearing aid issues.

Lately, I've been interested in blogs written by adults with hearing loss. People who got hearing aids after they already possessed language or lifelong wearers who've already conquered the childhood challenges of life with hearing aids.

Here are a few blogs giving an adult perspective on something my daughter can't yet really explain:

Do You Hear What I See: A recent post about the pros and cons of normal hearing caught my attention. Sometimes it is relaxing to be able to shut out those annoying sounds, but it is outweighed by missing a kids cry for help in the night. I'm a bit relieved there were pros!

Growing Up Hard of Hearing is written by Danielle, a girl born with bilateral sensorineural hearing loss. I love her post 17 Misconceptions about People with Hearing Loss.

Aided as an adult, Speak Up Librarian tells of the first day with hearing aids. It is great to think of all the things Julia heard for the first time with her new hearing aids but didn't have the language to articulate.

These bloggers are giving me some insight into the coming years. Their prospective is so much more valuable that the old "hearing aids are like eyeglasses for your ears." I have normal hearing and can tell that it's not quite that simple.

Sunday, January 3, 2010

The dreaded IEP meeting

The Individualized Education Plan (IEP) is the document starting at age 3 that will guide the all aspects of a child's therapy and learning environment for the following year.

Our personal journey through the IEP process seems like something that happened long ago and far away. The memories have dampened to include only the most ridiculous comments that came from the other side of the table. (The interim teacher of the deaf read Julia's audiogram upside down before reassuring us that she could hear speech sounds just fine!) Subsequent revisions and updates to Julia's IEP have come much easier and without the war mentality required for that first meeting.

The advice I offer to any parent preparing for this meeting is to know and visit every option available to your child. Visit the programs even if you hate the idea of them. Visit the school you know won't be approved. At every turn there is information (ammunition if you will) to be gained.

Before our meeting I visited the DePaul Institute, a preschool program suggested by the other members of the IEP team, and two different speech classrooms. We battled to get decision makers at our meeting and then discussed each option and each element of the plan for over three hours. It was an epic undertaking.

We left feeling satisfied that we'd secured the best setting available for intense speech therapy needed to overcome the time lost before Julia got her hearing aids. Eighteen months later we had results to confirm that we'd been successful in advocating for our child.

It is most important to remember that this is no small undertaking. You must be on your game. You have to be prepared. You have to study. A great starting point for getting all the most out of an IEP is Kids Together, Inc, a non-profit resource for kids with disabilities. They have a terrific list to get you started with your research and planning. Except for their suggestion to "make the meeting festive", I agree wholeheartedly with their suggestions.

Our IEP meeting was far from festive.