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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. Today, I’d like to talk about how we as parents can look at our child’s life and look at our parenting with the goal of helping to maintain and create beautiful, inclusive, full and wonderful lives for our children.

With me today, I have Genia Stephen, who helps kids with intellectual disabilities build inclusive lives in school, at home and in a community. She is the founder and host of The Good Things In Life podcast for kids with disabilities. She also manages a community of parents of children with disabilities.

Dr. Lilach Saperstein: “Genia, welcome to the show.”

Genia Stephen: “Thank you so, so much for having me. I’m really excited to be here and excited to be spending more time with you.”

LS: “Thank you. So, I want to ask you about yourself and how you came into disability work to begin with.”

GS: “Yeah, sure. So, I have a younger sister, I mean we’re not young anymore, we’re in our forties, but a younger sister who has an intellectual disability. And I had the great fortune of having a mother who was a really fierce advocate and she really kind of brought our whole family on board. So, I had the great blessing of growing up in a disability-positive community surrounded by internationally renowned thought leaders and mentors. I really received a world class disability parenting education just growing up. I did some work in the disability field and presented it. Did some teaching myself, as well. And then fourteen years ago, I had my second son and he has disabilities as well. So, I kind of came on board as a parent, in addition to being a sister.

My mom was really involved in the disability parent movement for my sister’s whole life, and she still is. And I was not really sure where I fit into that. And my other world is that I’m a registered midwife in Ontario, Canada. Over many years, I’ve worked with hundreds and hundreds of families and it became really apparent that the experience of most parents of having a child with a disability was very dramatically different from what I had experienced. And I already knew that. But one of the key differences that I was seeing over and over again, was that one, I didn’t have to learn a bunch of stuff. Also, who surrounded me and the kinds of ideas that surrounded me when my son was born was dramatically different than what other parents experience.

So, when my mom first received a diagnosis for my sister, parents of her generation either looked something up in the yellow pages, which some young parents might be even so young as to not remember. But the phone book used to be how we found phone numbers. So, they would look up something in the phone book or maybe their family doctor would provide them with a brochure or something like that. And they would get connected with another parent or an organization or that kind of thing. But what happens for parents now is that they get a diagnosis, or even suspicion of a diagnosis, where they are in that unsure and uncertain phase of things. And they will immediately Google that diagnosis and what they get from Google is a list of complications and a list of Facebook groups around that diagnosis or treatment modality.