Thursday, June 13, 2013

Kelly Dougher Shares "How Not To Be a Dick to Your Deaf Friend"

Just popping in to share an amusing, enlightening and ultimately very useful article, written by Kelly Dougher for xojane.com: "How Not To Be a Dick to Your Deaf Friend." Kelly seems to be around my age and also works in a library, but does not wear hearing aids or use a cochlear implant.

While every d/Deaf person is different, I really enjoyed this list. My brother actually told me a story about the first item on her list. He was telling a coworker that I am deaf. She said she was so sorry, and he asked why. Turns out she thought he said dead. Pretty funny!

 I'd add one more item to this list:

If I ask you to repeat something, don't just repeat what you think I missed.
I know this is easy to do, because I've caught myself doing it before, but it drives me bonkers. If I need something repeated, I probably need the whole sentence repeated. Chances are I actually caught the "important" word in the sentence that you're repeating back to me, but I need some context.

Thoughts on the article?

Saturday, June 8, 2013

Thoughts on Genetic Hearing Loss and My Son

My dad and I, on the day I was born
(First off, I apologize for not blogging more recently. Pregnancy, work, school and life in general have taken up the time I used to have for this blog, but I hope to still write when I can.)

I have heard a question from a few people over the course of my pregnancy wondering how possible it is for Tripp (our nickname for our son) to be deaf or have a degree of hearing loss. I thought I would ruminate on this subject a little bit.

I am not sure if I got a hearing test when I was born in 1986, but if I had I probably would have passed it. When diagnosed, my hearing loss was mild to moderate at age 4. The signs were fairly subtle and it was only thanks to my mom's observational skills and mother's instinct that I was tested for my hearing loss. I was fitted for hearing aids. Subsequent doctors/audiologists told my parents that my hearing loss was likely not genetic. This was in the 90s, of course, when genetics were not as well understood as they are today - now you can spend $99 on a genetics test and learn about your genes.

It is possible my hearing loss is not genetic, but I have a hunch that it might be. Nonsyndromic (i.e. I have no other symptoms that might point to a specific disorder) sensorineural progressive hearing loss doesn't seem to be common outside of a genetic disorder.

According to the genetic test I have taken (through 23andMe*) I do carry a mutation in the GJB2 gene linked to connexin-26 sensorineural hearing loss. I don't have the two mutations usually associated with connexin-26 hearing loss, but I can pass it down. If my husband, who has typical hearing, also has the mutation, he could pass it down, meaning Tripp might inherit two mutations and thus have connexin-26 hearing loss. He hasn't done 23andMe, so we don't know his carrier status.

So what it comes down to is basically what it comes down to with any child and any inherited condition - it's possible. Of all the genetics roll-of-the-dice that could wind up with Tripp having some kind of disorder or condition, if I had a choice to pick one, I'd take hearing loss, because I am more familiar with it and the resources our family would need to help him. But when it comes right down to it, the possibilities are there for any number of complications, hearing loss being just the one that happens to come to mind most often.

I just know that my job as a mom will be to love my kids no matter what. I'm surrounded by great role-models in that regard, and I know it's not going to be an issue for me. I can't wait to see what the genetic roll of the dice gives Tripp - his dad's hair, my nose, whose eyes? We will see, and that includes his hearing, as well. 

*referral link. Non-referral: 23andme.com