This is going to be a long post. I totally understand if the technical updates surrounding Gigi’s deafness aren’t as interesting as some of the other posts I might write. This is a journal for her too though, and as we progress through the decisions that face us in regards to sound access for her, I want to make sure that all our thoughts, hopes and worries get recorded.
We had our first appointment with Audiology on Tuesday. Gigi cooperated moderately well in the booth, enough for us to confirm that she is severely to profoundly deaf in both her ears. We then met with an ENT doctor. They feel Gigi’s ears look fine structurally, from what they can see by looking with a regular otoscope. Now we need to move to doing some more in-depth testing to see what tones/frequencies she can hear (if any at all), and what the inner structure of her ear looks like. This involves sedating her.
In order to do that though, we need an all clear on her heart.
On Thursday we saw our Speech and Language Pathologist for the first time through our large University’s Hearing Clinic. A Professor and Grad student will be working with Gigi each Tuesday and Thursday morning. For the beginning of the appointment they watched us play. They watched to see how much signing I was doing to her, how much she was doing to me, and how much vocalizing she did. I thought it was practically none. Turns out, it was a lot. When we sat down to go over their findings, they said Gigi has a beautiful voice. With the right access to sound prior to her turning 4.5 years old, when a certain part of her brain ‘hardens’, she may have better success with clear speech. What was even more important to me though were all the studies on reading comprehension in kids with sound access. Bottom line is, it will be easier for her to really learn how to read english the more access she has to sound.
Our goal for Gigi is to become bilingual. Not verbally, I don’t care if she ever says a word, but for her to use ASL as a primary language but have excellent english reading comprehension. I want her to be able to move into the hearing world and access language if she needs it. She can do that by writing. I want her to be able to use ASL to move back into Deaf culture seamlessly. This is my hope for her.
The question is, how do we do that? Is it through hearing aides? Is it through a Cochlear Implant? Do we go ASL only and work tirelessly to help her master the english language. These decisions aren’t even close to easy, and the hardest part is that we’re making them with no input from her. I have to choose FOR her. I hate that. If I wait too long, I run the risk of missing a critical window. If I move now, it’s permanent and maybe she’ll resent me for trying to change her later.
It’s all so hard.
I keep reminding myself that it was about a year ago now that I was making these types of choices for another little Chinese girl that I love more than life, except that time, the decision could have meant losing her forever.
That sort of puts it in perspective.
–FullPlateMom, who is trying very hard to hold it all together.