WEBVTT

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Helen Cotton-Leiser, Parent Partner, Oregon: I spoke with my nurse practitioner and he observed my daughter, and he has a deaf stepdaughter, so I felt really

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comfortable. And after the tubes were put in, she was responding to airplanes, but nobody suspected anything with her.


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I mean, she would crawl away and you'd call her name, and she'd turn around and look.


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And he observed her and he said, I really have no idea, but we need to get her tested.

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And so he set up for us in a different clinic and spoke with that audiologist, so there were no blinking lights.


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I mean, you could tell right away. And I could see through the booth watching that she was not hearing anything.

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And then my youngest, before we knew with her, she would cry and I would-- before she could see me, start talking to her.

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And I swear she calmed down. And it was really confusing because I was paying attention and a lot more aware.

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And my husband and I were going around and around, like I think she can hear.But then I also think she can't.

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We actually ended up going a private route because the public route was so frustrating from the very beginning.

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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

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to be allowed to be the parent and be equal at the table.

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From the get-go, I was told what I had to do, that this was how it was done.

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And so that's a huge driver in how I am approaching things with this project.

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I see that they really want that parent perspective.
It's kind of nice, actually. Because there are times

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when we would just feel like we're just a parent, but we're not.

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We actually have some really good input, even if it's just our own story.

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One of the things that we're going to introduce into the project is the midwife community.

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We have about 700 or more-- it's actually over 700 births a year that are out-of-hospital births,

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and a large percentage of those babies don't get any newborn hearing screen.

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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

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what our options are, and that they're open to that and they're going to listen to us.

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We have people doing this for 20 years, but they're using a model from 20 years ago.


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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,

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they can go off and do anything. But they need the right stuff from the very beginning, and so do the parents.