Wednesday, February 4, 2009

Another Update on the Deaf Kid


Yesterday was...nuts. I'm not used to waking up at 5:30 (and as it is, I had to hit snooze before I could actually get up). We were out the door before 7:00 (1/2 hour late, of course) and on the road for another hour and a half. Rachel's doctors are in Ann Abor, at the University of Michigan. A few times a year she needs to get her implant checked--to see what she can hear, what she understands, and to adjust the implant levels if possible. Rachel always likes these appointments because she gets a lot of attention and the audiologists spend a lot of the time playing with her. Since these appointments usually last nearly two hours, its good that she enjoys them.
For anyone new to this blog, check our 2007 entries to get an idea of Rachel's history.
So here's the verdict: despite the odds, despite doctors' warnings and medical probability, Rachel can likely hear as well as any other cochlear implant kid. The problem is that since only 1/2 of her implant is activated (her cochlea is small), the sound she gets may be garbled and unclear. So we still have work to do. We are planning on increasing her speech therapy and adding another therapist in Ann Arbor (mean a super-fun drive once a month) to help her out. Rachel will always be deaf, will always need interpreters, but we think we can teach her to talk reasonably well and we think she might be able to hear/read lips well enough to help her out socially. I think that's our best case scenario.
At the risk of going too long with the entry (and no pictures! Sorry...), let me try to give you an idea of how having one deaf child affects the family.
~Music: Christian grew up in a very musical family, but its a little difficult to pass something like that on to our family when Rachel has such a difficult time participating. We are finding ways; she loves to dance and enjoys hearing music, but will probably never hear well enough for it to make a lot of sense.
~Reading: Ever try reading outloud, signing a book, and trying to show pictures at the same time? Its difficult. Usually, we either read to Rachel or read to the other kids. Its difficult to do both at the same time. And interpretting the scriptures? I'm not nearly good enough at ASL to do that. It makes scriptures study a real challenge.
~TV/Movies: Rachel enjoys watching t.v. (for a little while), but doesn't really understand much of what goes on. So--movie nights as a family don't really work. We have to be careful to not plan family activities that exclude her.
That's just a few things. We really love her. Having a deaf child is a challenge I never expected, and I constantly wonder if I'm doing everything I can for her, but anyone who knows her knows how happy she is, and can see her growing and learning. I know that Heavenly Father is watching out for her, and helping to make up for my inadequacies.
I liken having a deaf daughter to giving birth to a foreign language-speaking baby-with a language you don't know. I didn't know any ASL before having Rachel, and there are so many opinions and options for deaf children that it is difficult to decide what is best. Rather than having to learn French or Spanish, parents of deaf kids choose between ASL, signs in English word order, Cued Speech, implants or aids, speech therapy or not, lip-reading/auditory only...etc.. In our case, we've asked for some of each. Most schools won't accommodate this type of plan, but the school Rachel is in now does a lot.
Anyway, consider this my deaf-diatribe.

7 comments:

DeAnn said...

So that's how you used a 1/2 tank of gas. Rachel is lucky to have you all as her family.

R&R Palmer said...

The church just announced in the last while that the BOM in ASL was available. Also the scriptures stories books for kids are available in sign.

Love, Aunt Rosemary

Stanley said...

wow this was really neat, I am so proud of you for all you do with Rachel and all the others. What a blessing for us all

whitney2001 said...

Oops, just checked in sorry. :) You can catch me on myspace, facebook, or at the same old email address Ive always had: whitney2001@yahoo.com Did you know I even tried emailing your father several years ago? I think I saw what was his email address in an old email you must have forwarded a lot of people or something. That was more than 5 years ago now Im sure but I never even got a response or a failed attempt or anything. How is the rest of your family? How is your mom?

Debbie said...

So will she get a larger cochlea implanted in the future? I'm sorry it's such a drive for you guys, that's a real pain. I'm so glad the Atonement is available to make up for my shortcomings, with Reese in particular... way to go and keep going!!

val m said...

You are such a sweet thoughtful mom! I am sure that you are both blessing each others lives. She is such a sweetheart and like you say - so happy!

Elizabeth said...

Great blog! I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!