Tip:
Highlight text to annotate it
X
[MUSIC PLAYING]
I spoke with my nurse practitioner and he observed
my daughter, and he has a deaf stepdaughter, so I felt really
comfortable.
And after the tubes were put in, she was responding to
airplanes, but nobody suspected anything with her.
I mean, she would crawl away and you'd call her name, and
she'd turn around and look.
And he observed her and he said, I really have no idea,
but we need to get her tested.
And so he set up for us in a different clinic and spoke
with that audiologist, so there were no blinking lights.
I mean, you could tell right away.
And I could see through the booth watching that she was
not hearing anything.
And then my youngest, before we knew with her, she would
cry and I would--
before she could see me, start talking to her.
And I swear she calmed down.
And it was really confusing because I was paying attention
and a lot more aware.
And my husband and I were going around and around, like
I think she can hear.
But then I also think she can't.
We actually ended up going a private route because the
public route was so frustrating
from the very beginning.
And I couldn't even just kind of get someone to explain how
to get from A to Z. And it was very clear that-- at least I
walked away feeling like i wasn't going to be allowed to
be the parent and be equal at the table.
From the get-go, I was told what I had to do, that this
was how it was done.
And so that's a huge driver in how I am approaching things
with this project.
I see that they really want that parent perspective.
It's kind of nice, actually.
Because there are times when we would just feel like we're
just a parent, but we're not.
We actually have some really good input, even if it's just
our own story.
One of the things that we're going to introduce into the
project is the midwife community.
We have about 700 or more-- it's actually over 700 births
a year that are out-of-hospital births, and a
large percentage of those babies don't get any newborn
hearing screen.
There's an emotional connection with our providers
and we need to know that they're current with deaf
education and that they're able to talk to us about what
our options are, and that they're open to that and
they're going to listen to us.
We have people doing this for 20 years, but they're using a
model from 20 years ago.
And that's not the model that's serving our kids today.
Our kids are just deaf or hard of hearing.
And with the right tools and the right intervention, they
can go off and do anything.
But they need the right stuff from the very beginning, and
so do the parents.