Thursday, July 12, 2007

My Deaf Daughter

Hard: Getting a 10-month old to keep her hearing aide in when she doesn’t want to.
Easy: Getting into a power struggle with that same little girl over that same little hearing aide.

Long time readers will know that my daughter was diagnosed with near-total hearing loss at age 4 months (see here, here, and here); it’s made parenting even more of an adventure than it would have been. She has a hearing aide, but I guess she doesn’t like to listen to daddy because the second I get home she pulls it out.

So I put it in.
So she pulls it out.
So I put it in.
So she pulls it out.
I put it in.
She pulls it out.

Repeat all night long, until exhaustion.

Her newest specialist is a physical therapist. The thought is that because of her deafness her balance was thrown off, which is why it was taking her so long to master sitting and crawling. She absolutely loves PT; the way her face lights up when she sees the therapist is one of those great parent moments, and the PT itself has made a real difference. I’m still not looking forward to teaching her how to ride a bike, but we’ll cross that bridge when we come to it.

I’ve never been much of a doctor guy. Yeah, it’s a stereotype, but it’s me. I’ve got a general practitioner that I go to when I have to, but that’s maybe once every two years or so. Kailey, on the other hand, has:

An audiologist, a physical therapist, a hearing aide specialist, a pediatric optometrist, a consulting teacher from the area school for the deaf, the ENT doctor, her family practice doctor, a geneticist, a pediatrician who specializes in special needs kids, a social worker through the county social services office, and a partridge in a pear tree.

That’s not counting the innumerable secretaries and nurses who have helped us along the way. It’s certainly been a team effort, and I say a prayer of thanks every night for the support we’ve had.

It makes me think pretty regularly of the families, both here and abroad, that don’t have the resources available that my daughter does. Being a teacher helps, because I’m more familiar with the system than many might be. It’s still hard, though, to give up all the time to take her to all the appointments (2 a week normally, sometimes 3 or 4). When we balance that against doing whatever it takes for her to “make it”, though, we get it done. That’s what all that accrued sick leave is for, right?

The next big thing will be to look at a cochlear implant. The right ear is profoundly deaf, the left ear severe to profound. What that means is that we’ve been able to use a hearing aide in the left ear, and her ENT doctor thinks that might be enough to get her through life. The teacher who works with deaf kids strongly disagrees; in her experience as a deaf educator the kids who get the implants are almost always better off than the ones who try to go with the hearing aide alone. She says there’s a new trend towards getting bilateral implants, one in each ear. It’s amazing what they can do, really.

Looking around online doesn’t really help. One website will tell me that if I give my daughter a cochlear implant I’m wasting $50,000 and helping commit cultural genocide; another is filled with glowing testimonials from parent who finally have a “normal” child. I don’t know what’s right. I know the life I dreamed of having with my daughter, and there are still days when I mourn the death of that dream, but it seems like getting the implant would be a step, a small step, towards normality.

Then I ask myself, what is normal? So what if we do sign language, so what if her speech never fully develops, so what? So what.

So what.

We have a test coming up in a few weeks called an ABR, where they sedate her and hook her up to the brainwave monitors to see exactly what sounds are getting through and at what decibel levels. That will give us (meaning the whole team) a good look at where she’s at and just how much the hearing aide can do for her. After that, the discussion begins.

I’ll let you know where it goes.

She’s also started crawling within the last week. You never know how many things that you have are close to the ground until you have a baby. So far she’s tried to eat leaves off my ficus, chewed on an electrical cord, and had more fun with shelves than should be legal. It’s neat to get down on her level and just look at all the things that are out there for her to get in to. Neat, and annoying.

That’s my daughter :-)

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7 Comments:

Blogger jmoon said...

Hi,

Found your blog via Matt Tabor's links. I enjoyed the post, and am pulling and praying for you and your daughter.

Here's to different, and sometimes annoying, new perspectives.

9:28 AM  
Blogger The Science Goddess said...

We had a student at my school a few years ago who had gotten a cochlear implant---and was thrilled.

The big difference here were that the student was a teen who had lost her hearing due to an accident the year before. She was old enough to make a reasoned decision about surgery on her body...and she knew what it was like to live in a world of sound.

You'll have to make the best choice you can on behalf of your daughter. I wish you well.

8:08 PM  
Blogger NYC Educator said...

I'm sorry to hear about your problems. I know it's little consolation, but there's always a negotiation with young children, and all parents are constantly trying to maneuver through it as smoothly as possible. While we learn from our mistakes, the kids do too, and that means we have to be twice a tricky.

I certainly wish you the very best, and your daughter's lucky to have such a concerned, caring parent. All too many kids don't.

7:31 AM  
Blogger Exhausted Intern said...

Hi there,
As I read about your daughter's condition and your situation, it reminds me a great deal of when my son was about the same age and had plagiocephaly and torticollis, which required him to wear a helmet 23/7 for six months, visit Children's Hospital regularly, and attend physical therapy twice a week. It was so hard on me as a parent - seeing my son suffer, and as a teacher - having to be out of my classroom so much. Generous colleagues donated sick leave so I could take him to appointments, as I had used up my sick days on maternity leave. At least as teachers, we are fortunate to have some time off in the summer to spend the extra time necessary for more intense treatments that are not time-sensitive. The staff at Children's are just wonderful - is that where you have been going? I am happy to say that my son, now almost 4, is well now. I can't begin to imagine how difficult your decision must be. Whatever it is, you will be doing what you believe is best for her, and that is what matters. Best of luck in your decision - I'll be thinking of you.

9:27 PM  
Anonymous Wanderer said...

Good evening,

I chanced upon your blog while searching for information regardless brainwaves and its effect on helping deaf people to recover.
It is very heartwarming to read your story. You will definitely be a great parent, all the best to you and your daughter. ^^

KS

10:43 AM  
Blogger Val said...

Don't know if it'll help, but I have two deaf children. see our blog at www.deafkidscanhear.blogspot.com
good luck.

6:11 PM  
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6:58 AM  

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