In this episode of Green Mountain Disability Stories, occupational therapist Adrienne Miao interviews occupational therapist Mary Anne Lewis. Mary Anne is also mom to Patrick, Desirée, and Dustin. Patrick is a Vermonter living with cerebral palsy and blindness, and as his mom, Mary Anne helps Patrick run his own successful business while she and her husband run a bed-and-breakfast in Vermont. MaryAnne shares what she and her family have learned about moving to Vermont and joining a new school, the overlap between her occupational therapist and parent roles, and the fine art of shipping jars of dry goods.

“Patrick has used switches to control his environment for a long time. He has one switch that controls his music, another that turns on his fan and another that runs his blender. He also has another switch that is hooked up to a measuring cup on the end of a gooseneck. Patrick has used this device for years to help water the plants, help pour the milk for a milkshake, etc. As an Occupational Therapist, I was constantly thinking, ‘What could Patrick do vocationally, with his switches?’ And then it came to me that he could make layered jars of cookies, soups, etc., using his ‘pouring switch’. And thus, Purely Patrick was born.”

https://youtu.be/YvVjE0gfJEc

A full transcript appears below.

Adrienne: All right. Thank you so much for joining me, Mary Anne. I’m so excited to get to talk to you! So this is the Green Mountain Disability Stories Podcast. My name is Adrienne Miao, and I am a community services coordinator at CDCI. And today, I have with me MaryAnne Lewis.

I’m so excited to talk about her various connections to Vermont, to disability advocacy and to being a family member of someone with a disability. MaryAnne, can you tell us a little bit about yourself and about how you got into the profession that you ended up pursuing?

Mary Anne: So I am an occupational therapist, currently retired, although I’ve maintained my license. I knew growing up I just always wanted to be in a helping profession. I was thinking I wanted to be a PT because I think, like the rest of the world, I knew more about PT than I did OT. It was actually my older brother who was an influence.

He was studying pre-Med at a college that also had an OT major, and he said, “Why PT? Why not OT?” And I said, “Because I don’t really know much about it.” And he said, “Well, let me introduce you to some of my OT friends.” And so I spent a little time on the campus with him, and then I started volunteering for different OT departments to see what it was really truly like. And so he is exactly almost four years ahead of me, so he was gone off campus when I entered as a freshman, but it was really my brother who was influential in guiding me that direction.

Adrienne: Well, okay. So this is a great transition to ask a little bit about your family. Do you mind sharing a little bit about your family?

Mary Anne: No, not at all. So George and I had been married for seven years before we took the plunge to have kids. We had Europe on the bucket list and get a house on the bucket list. And so I was pregnant at 30, ended up in the hospital on the long term, high-risk OB-GYN unit. I had been minding my own business sitting in a grad class at Hopkins, and at that point, I was 20 weeks pregnant when my water broke.

And so that was the beginning of a long and a short bed rest. So I was on bed rest in the hospital in entirety for six weeks, which feels like a long time, I wish it could have been longer. At 26 weeks, I had to have an emergency C-section and Patrick was born. So he was then in the NICU for about three and a half months, about 14 weeks premature. That was just about how long he was in the NICU.

And then when Patrick — well, it was a process, but eventually, when Patrick was seven, we ended up adopting two kids.

They’re siblings, and they were in the US foster care system, and they were out in Colorado. So we journeyed out there. There was quite a transition of getting to know them through their therapist, and they wanted George and I to just go and we said, “You know what? Patrick is part of the family, we’re not going without Patrick.” But we did realize there would be times when the very first meeting may not have been, it might’ve been overwhelming to meet Patrick at that point.

So then my parents said, “Well, we’ll go along too.” So it was quite the contingency that went along to Colorado and it was a week of us visiting them at their foster home, to them staying with us at the hotel and just visiting the foster home, so it was a interesting transition. And so we went to Colorado as a group of five. We came back as a group of seven.

So those two, Dustin and Desirée, had been in six different foster homes by the age of five and six. So they’re all very close. They’re about a year, at that point, they were five, six and seven and so I had three kids on three IEPs. And so that’s probably a story for a whole other day. But they’re doing very well. They’re all on their own now and independent. Patrick lives with us, but Dustin and Desirée are living on their own.

Adrienne: Oh, that’s wonderful. So can I ask, it sounds like you probably had to start explaining disability to children at a fairly early age when children were fairly young.

Mary Anne: Yes, absolutely. And kids are actually sometimes more understanding and more accepting than adults are. Patrick loves the pool, he always has loved to swim. And so we planned it that the first time, and we knew that Dustin and Desiree really enjoyed the water, so we made sure we had a hotel that had a pool. Patrick was already in the pool, his wheelchair was off to the side. He was swimming happily in his way that he swims. I always say it’s like a convoluted butterfly, he really is amazing in the water.

A pale-skinned man in his mid-twenties, with short dark brown hair, floating on his back in a pool, knees tucked up and hands clasped on his chest. — Image courtesy MaryAnne Lewis

And so the kids met Patrick in the pool. And so I felt like that leveled the playing field a little bit, and everyone was just splashing and playing and having a good time. And I don’t even think they really realized initially that Patrick was not verbal. Everyone was just so excited and wound up and happy to be swimming. And then we just answered questions honestly as it came.

We had sent them a big scrapbook ahead of time. And so in there we had pictures of Patrick in his wheelchair, pictures of the ramp at the house, pictures of the adapted lift van and some explanation of Patrick doesn’t see, Patrick uses different ways to communicate than we do, his legs don’t work like yours and ours do. And so they had some introduction before they had met Patrick.

Adrienne: I love that. I just think it’s such a thoughtful and creative and a very OT way to think about play as the common thread, and bringing people together in a setting that’s very comfortable for children and very exciting.

Mary Anne: So the funniest, we took a lot of pictures, as you can imagine, that first meeting in the pool. The funniest picture is my dad diving. My dad was a very good swimmer, diving right below above the sign that says no diving. And the kids never let him forget, especially as they got older and they like to look at those pictures, they’re like, “Look at grandpa, he’s a rule breaker.”

Adrienne: This is where you got the silo thing. It was a…

Mary Anne: Right, right.

Adrienne: First down.

Mary Anne: It’s not my fault.

Adrienne: Had you worked in pediatrics at all or were you an adult OT?

Mary Anne: No, I had worked in adult OT. I had always done adult rehab. One of my internships was in adult rehab and I really enjoyed it, and that’s what I was comfortable in. And so I had always done adult rehab. After Patrick was born, I thought, “Oh, there’s a whole world of pediatrics I never really thought much about.” And I quickly learned that they’re not just little adults.

Adrienne: No, Right.

Mary Anne...

Episode 27: Mary Anne Lewis