After the ABR, we were apparently referred to the state department of health, and subsequently, another advocacy group for those who are hard of hearing. I received a phone call setting up a meeting and met with an advocate who started asking me all kinds of questions I wasn't prepared to answer. A few examples:
How do you communicate with Isaiah?
Do you use sign language?
Do you use cued speech?
How do you know if he understands you?
What does his IEP have in place to address his hearing loss?
First of all, I hadn't even considered sign language up until now. It wasn't until a month ago that I found out his hearing loss was "moderate" and I haven't heard anything since. Second of all, I have no idea if he understands me. Not because of his hearing, but because of all the other developmental delays he has. I never imagined that part of why he isn't communicating is because he couldn't hear me. Lastly, his IEP does address it but they also didn't know the depth of loss or exact measurements to plan for exactly what he needs.
So here I am feeling like a failure yet again. I know all this new information may or may not even make a difference, but it's so hard to think about things from a totally different perspective. I also know that the group deals specifically with hearing loss, and has no idea about the other delays and challenges Isaiah has faced since before he was even born. But throwing something like this at a mom who is already facing so many challenges was quite a blow.
Now my heart is sinking because I'm wondering if we were dismissed by other doctors before. As in, maybe they didn't consider Isaiah's hearing a priority because they didn't have a very good outlook on his future. Or they thought his developmental delays were so severe that they just didn't give him a chance. We have seen over four ENT physicians at three different facilities and it wasn't until the fifth physician that we finally got the ABR done, and it was more of an after thought because he was already having a surgery.
We meet with the audiologist again next week to hopefully get hearing aids to trial, and I am going to have A LOT of questions for her. Wish us luck!
|Belle fell asleep while watching a movie with Isaiah. <3|
|Little Miss Lani holding her brother's hand. <3|