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.
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: 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.
Mary Anne: Like reflexes, let me go back to my textbook. I would’ve said internet had it been now, but there was no internet at that point. So I switched, I transitioned to a… I had been at that point, a director of a fairly large OT department in a hospital in Baltimore that had rehab. It had acute care and it had inpatient. But so I switched to a pediatric hospital and I feel like it was this symbiotic relationship.
I was learning what I was doing with the kids and I’d take it home and do it with Patrick, and then I’d get an idea when he was at therapy and I’d be like, “Oh, that’s a good idea for such and such.” So it worked both ways. And I was there about two years, and then I transitioned to the Maryland School for the Blind. Patrick was actually there as a student in the infant toddler program. And so I went on Fridays to understand the program more.
And I’ll never forget, he was on a platform swing with an OT, and she said, “So what do you do?” And I said, “Well, actually, I’m an OT.” So she said, “We just lost our supervisor. You want to come?” So I was like, “Well, I think that’s a conflict of interest.” Well, every Friday I met this therapist with Patrick on the swing, and every Friday she’s like, “Did you change your mind yet?”
So anyway, I thought, well, summer’s off, there’s something to be said for that. And if it is a conflict of interest, I can find another OT job in a second, and Patrick can stay put. And so 16 years later, I was still there and loving it and probably would still be there to this day if we hadn’t moved to Vermont, which again is another story.
Adrienne: So could you tell us a little bit more about Patrick and what it was like maybe in the early years when he started in the school system?
Mary Anne: Well, so let me back up, because I don’t think I’ve really told you Patrick’s diagnosis.
Mary Anne: The first diagnosis that Patrick received was retinopathy of prematurity, and we suspected that he was hearing impaired, which he is not. But he loved his baby swing and he would always position his head a certain way, and we thought that he was trying to hear better out of maybe one ear. As it turned out, he had a little bit of vision left and he was trying to see, so it was the pediatrician that picked up that he was not getting that red light reflex. And so that was his first diagnosis, was blindness.
And I think that one being his first, probably hit George and I the hardest. And that’s where Patrick’s love of water came in because I wasn’t sure at that point whether he was going to be ambulatory or not. And I had visions of Patrick wandering into a pond, why he would be unsupervised and wander into a pond is beyond me. But I kept thinking he’s going to fall into a body of water when he is ambulating and he needs to learn to swim. And so he learned swim to survive really, and have fun in the water at a very young age.
His next diagnosis was cerebral palsy, and actually probably in between, it was just probably that global developmental delay, because they don’t usually label CP until you’re probably three-ish. But the cerebral palsy label by that point was, I don’t want to say obvious, but it was easier to accept because it was a little more obvious. And Patrick had been getting early intervention and OT and PT and speech, and so CP spastic diplegic. And we were both okay with that diagnosis because it also made insurance coverage for therapies, for wheelchair, different positioning devices more readily available.
Then there’s the switch from — and I’m not really talking about school, but I’ll get there — there’s the switch from the stroller to the wheelchair, and I’m thinking that probably happened at three or four-ish. Patrick was a pretty little guy and it was a pretty little wheelchair, but I remember all summer long taking Patrick to the community pool in his stroller, and the summers before. And then one day I took him to the pool in the wheelchair.
And the difference it made me feel, which was probably perceived more by me than anybody else, but again, that’s a whole nother lecture. But that was a transition. And then Patrick went from early intervention to preschool. And in preschool at the Maryland School for the Blind, all the kids are together. They’re not put into silos, so to speak, because then once they reach five-ish, they go into a designated program. Whether it’s the academic program, these are going to be braille readers, they’re going to travel with their canes, or the program that serviced kids that were autistic, or the kids that were learning more life skills.
And so Patrick was in what they called the life program, which was learning in functional environments. And so I think that was a bit of a transition very early on in the IEP process. We had to designate was Patrick diploma bound or was he certificate bound? And that was a difficult adjustment at that point. I think truthfully, the hardest transition or hardest diagnosis to accept was when the psychologist labeled Patrick mentally retarded. And I realized that we don’t use that term anymore, but that was his initial diagnosis.
And I went into defense mode and I said, “But he said pizza last night.” And because she labeled him severe and profound, and I just was like, “That’s not true. He’s very smart.” And I went into that defensive parent mode, and ultimately I think her diagnosis was spot on. I just wasn’t ready to hear it, and this is where it was different for my husband and I.
I was very ready to accept the wheelchair because as a therapist, I’m like, “Man, that umbrella stroller is just not cutting it anymore. His posture looks abysmal.” And George did much better with the diagnosis of MR. He said, “You know Mary Anne, Patrick is the same Patrick he was yesterday as he is today.” So he helped me get over that.
Adrienne: I really appreciate you sharing about these different labels and these different time points where things really hit you as a parent. And I can really appreciate the difference with your therapist eyes, thinking about things like that transition from stroller to wheelchair does feel like a disclosure. It can be a real sign that he is going to be using a wheelchair and then to hear it, but you also recognize the access that that would give him and the postural support, and all the utility of using a wheelchair as an extension of your body.
And then just to have your husband in this other position where there were other points where he was grappling with. And I’m really struck by these meetings where you’re having these discussions with professionals, and you’re bringing both of these lenses to it at the same time, that that really is a really emotional time point. And I am curious about this other thing that you mentioned that putting him on a diploma bound track versus a certificate track. Do you recall about how old he was when that decision happened?
Mary Anne: Well, I think it was fairly young, and I think early on he was pegged for the certificate track. But the softening at the IEP meeting was, and we can review this every year, so if things drastically change, we can review this every year. The reason there was a delineation in Maryland was that there were certain tests you had to pass to get a diploma.
Interestingly, when we moved to Vermont and Patrick completed school in a Vermont public school system, he did indeed receive a diploma. Now, long-term for Patrick, it doesn’t matter. It didn’t make a difference one way or the other, but it was just an interesting difference of state politics, so to speak, or policies.
Adrienne: Right. And being confronted with these in these times when you’re navigating the school system of having to deal with this other aspect of labeling or diagnosis.
Adrienne: Yeah. Thank you for sharing that. So can I ask, when did your family move to Vermont?
Mary Anne: Winter of 2009. And that was instigated by, well, that was a family decision, but it was my husband who really wanted to own his own business, and we both kept turning to how about running a bed and breakfast? And so we started off looking in Florida because he thought that would be fun to sail and golf. And I kept pushing us further north, and we had actually met in Stowe on a bicycle trip, and I grew up in a skiing family that came to Stowe quite a bit.
My brother went to UVM. And so we ended up looking at an inn that was for sale in Chester, and I said, “I don’t think that’s where we want to go. Really not a highly populated area. Let’s look in Stowe.” And it had a three bedroom owner’s quarters. It was accessible to the most part, we tweaked it to make it a little more accessible. And so then that’s how we ended up in Stowe. We have since sold that inn after 13 years and have retired and are living a little bit further north.
Adrienne: Okay. And when you made that big move, your three kids were all in the school system at that time?
Mary Anne: Yes, yes. Which was interesting. Patrick had always been in a highly supported non-public school. So it wasn’t a private school, it wasn’t a public school. It was all special education children that was considered the least restrictive environment for all of them, 180 of these students from the whole state of Maryland. So it was actually had a boarding school five nights for kids who were either needed the self-care skills and the socialization, or were too far to travel on a daily basis.
Patrick was a day student, but he went from that, where there was literally six kids in each of the life skills classroom, one special educator and one, if not, two para-educators, to a public school where quite honestly, I don’t know that they had ever had anyone as involved as Patrick. A very receptive special educator who said, “Wait, what? You worked at his school? Can you help me set up his program?”
So I was thrilled to be able to do that. And I said, “Well, you know what? He uses this switch to interface with the computer, and these are some of the programs he uses.” We were trying to come up with a suitable adaptive PE for him, and we had joined a swimming hole, a indoor pool, and I said, “What if we took him Tuesday afternoons or whatever works for his schedule, and go with Patrick to the pool every week, and that becomes his adaptive PE?” They were thrilled with that.
His job was just the concept was developing. And so Patrick was designated to have a one-on-one aid at the public school, which in his other setting, he didn’t need a one-on-one because it was such a small student staff ratio to begin with. But in this setting, he had a one-on-one. So the one-on-one actually came to the house three mornings a week, because as you learn about Patrick’s business, there was a lot of stuff. There was assistive technology, there were ingredients, there were switches, and so it was easier for her to come to the house. And then the school bus would pick him up, take him for the rest of the day to school, and then the aid would meet him there.
So that worked out really well. So I’m very thankful because it was like a mini school for the blind within Stowe Public High School, because they were so very willing to make it work. One day we were at an Oktoberfest, George and Patrick and I, we were also on the rec path with Patrick, and kids who knew Patrick that we didn’t know them and we didn’t know they knew Patrick, stopped and said hello and talked to him. When they didn’t have to because they could have just passed by and we didn’t know they were in his class. So I think bottom line, they were a very welcoming group.
Adrienne: I’m curious from your greater social support or family network, was that a difficult transition from Maryland? Did you feel like you were well-connected to a lot of other local families, or families with children with disabilities?
Mary Anne: That’s a good question. I feel like we didn’t have family per se in Baltimore, so our family always had to make it a trip to visit us, and so we had a lot of visits. Of course, now we live in Stowe and we own an inn, so of course we had a lot of family visits. Oh, and P.S. we’re not really here to help you, we’re here to ski. No, they were very supportive. But in terms of other families, I think that took a little while to grow.
And I can’t even remember really who started it, but there was a Whine and Wine Club, and it started out for special needs moms, and it morphed to be special needs parents. And so very quickly, I think people realized I should be included in the Whine and Wine Club, and so I got to know quite a few parents.
I also figured out pretty quickly that if I got into activities that involved people with disabilities, that would be a good connection. So I joined the board at Lamoille County Mental Health Services. I joined the board of Green Mountain Adaptive Sports, as you well know. And that has really connected me to a lot of resources. Again, it’s that symbiotic relationship. I feel like I’m helping those organizations out, but they’re helping me out too in terms of like, “Oh, I never knew that was an option,” or, Oh, that’s a great resource. I’ll put that in my bag of tricks.”
Adrienne: Right. Okay. So can we talk a little bit, I’m curious about how and when you started to think about post high school transition? And I’m guessing because you had been in pediatric and school-based OT, that maybe you had that on your horizon a little bit earlier than many people do.
Adrienne: How do you change over time as you thought about what might be good options?
Mary Anne: Well, I think I started in total denial. Patrick is only five, I don’t need to think about it. Patrick is only six, I don’t need to think about it. Patrick is only seven, I don’t need to think about it. And then once we adopted the other two, it’s very important to do your homework. It’s very important to study hard. It’s very important to do well in school.
And I remember one day, Desirée, who was probably eight or nine at the time, said, “Mom, is Patrick going to go to college?” And I said, “No, I don’t think so, Desirée.” And she said, “Well, why not?” I said, “Well, I just think college might be too hard for him.” And she said, “Well, what is he going to do when he grows up?”
And I got very teary-eyed and I said, “You know what? I don’t know yet. I have not figured that out.”
And she said, “Oh, I know, his job will be to make everyone happy.”
And truthfully, her little nuggets of wisdom at her little age comforted me and carried me for quite a while because I thought: you know what? Patrick is such a happy soul, he loves to sing, he lights up a room, and Patrick’s job will be to make people happy. So I carried that as my comfort for a while.
And then I was facilitating functional life planning meetings at school, and that really became my passion and my thing, looking at involving the entire team, the parents, anyone the parents wanted to invite that were important to the child, and really looking at the child’s strengths and interests. Not what they can’t do, what can they do? And really trying to come up with job carving and individualized jobs for these very unique students. Meanwhile, I kept thinking Patrick’s option, at that point in my head, was this one particular medical daycare center, and it just didn’t sit well with me, and this was Maryland’s philosophy.
They were still into sheltered workshops. They were still in a very non-inclusionary model. They grouped a lot of people with like medical and intellectual needs together. And I thought, Patrick is going to sit in front of a movie he can’t see, not going to mean anything to him unless it’s a musical. Then they’re going to take him bowling and it’s going to be hand over hand. Well, you can’t hand over hand someone who’s using their hands as their eyes. Well, I can’t say you can’t, but hand over hand, hand under hand is not Patrick’s favorite.
You could put him in front of a glitter craft and he’d be like, “You want me to do what now?” And he’d have glitter all over him which is okay, but not the purpose. And it just didn’t feel right to me. So I kept thinking, “Well, what will Patrick do when he grows up?” And Patrick’s OT, which is the same one I met on that platform swing 12 plus years ago, had said, “You know what? Patrick uses this hand motion.” And since he was a boy we said, “It’s hand farts.” (There’s no other way to describe it.) “And how can we capitalize on that?”
Image courtesy MaryAnne Lewis.
And that is a long way from where he is now, but that’s the totality of how it started. So between Tracy, that OT, and me, mom/OT, we said, “Well, you know what? We’re looking to buy a bed and breakfast. What if Patrick makes bath salts?” So he used Epsom salts and he used scents, different smells and different food colorings, and he mashed the bath salts together within a Ziploc baggie using his hand motion. And that worked really well.
And then it was like, “Okay. Now what is he going to do with the bath salts?”
So Patrick was very — he loves switches. He’s very good with switches. He’s got cause and effect down to a T. So he had used a pouring device to help water plants, help dump the eggs in the cake mix, help make the milkshake. So it was like, “Well, what if he uses his pouring device and a funnel and little containers, and he pushes the switch to pour the bath salts?” So Patrick’s organic products pop into freshness with “Patrick’s Organic Products”, which in retrospect, we were like, “Probably not really organic,” but it worked for the title.
So that was a very short flash in the pan, because we moved to Vermont with our little teeny things of bath salts, and he sold them at the school store. And it wasn’t a real lucrative business, but it was something to do. And so we buy an inn, we move to the inn, all the rooms have whirlpool tubs. P.S. you can’t use bath salts in a whirlpool tub because it’s corrosive to the jets. So we’re like, okay, so much for the inn buying the bath salts and supplying them and selling them in the armoire.
And also, more importantly, right around that time, unfortunately, kids started snorting bath salts. And so bath salts became contraband. And I’m like, “Great, we don’t need to be making contraband substances.” And I will never forget, we had a couple that stayed with us at the inn for two weeks from Belfast, had bought maybe four or five of Patrick’s little containers of bath salts, and got delayed at an airport in Ireland because why do you have bath salts?
So they had to give them up, which it was only a dollar product at that point, so no harm, no foul. So that was when we said, “Okay. That’s got to stop.” So then I think the business just kept evolving. So I think the next thing we did was Patrick’s produce, and that looked like, okay, what is Patrick going to do?
So we had lots of marigold flowers around the inn, and when they dry in the fall, there’s tons of little marigold seeds. And Patrick could use that same motion, and the seeds would come out and we’d collect them on his lap tray, and that would be Patrick’s produce. We also cut up a million cantaloupes, honeydew, watermelon. Was there something Patrick could do with these seeds? Less so, he used the baggy formula to pull some of the pulp off. That was a little harder to do.
So these seeds got moldy. It really wasn’t a big market. So we’re like, “Okay. That really didn’t work.” So concurrently, Patrick loves the water, and I like to knit. So I’m like, “Patrick can hand-dye wool.” And then I thought, “Well, I don’t really want him dyeing wool with anything,” because he puts his hands in his eyes and his face a lot. So we thought, “Well, Kool-Aid is pretty innocent.” So we used Kool-Aid and vinegar to dye wool. And so Patrick would slosh around and then we’d have this big jumbled mess of wool that I had to ball up. And so we’d sold wool for a while. I still have some of that in my stash. But it was orange, it was lime, it was lemon, it was cherry, it was strawberry.
And there’s a finite need for Kool-Aid colored yarn. And so that was a flash in the pan. Every once in a while, once we got to the farmer’s market stage, someone would buy a ball of yarn. But that was just a concept that came and went. Along the same lines, and this is making headway towards the final product, is we thought about dog treats and Patrick could make dog treats, pre-made dog treats. Well, the recipe we used at that point really smelled strongly. And George would say, “No, don’t do them on a Friday at noon, because guests are checking in at 3:00 and it really smells.” And they didn’t have preservatives, so they had a very short shelf life.
And so I felt like we had the wool, we had the seeds, we had the dog treats, and what are we? They’re like, I just need to tie this together. So at the same time, we had a graphic designer who was helping us with some graphics for the inn, because we inherited cut and paste stationery, and we were like, “No, no, it needs to be more professional than that.”
So we had this phenomenal graphic designer, and when she was done with our project, I said, “Sally, I need a little help pulling this together for Patrick. He’s got this, he’s got this, he’s got this. They don’t relate. None of them are really worth much for resale. I don’t really know where we’re going. Do you have any thoughts?” And furthermore, Patrick didn’t really like the gooeyness of the dog cookies, and then you had to use hand over hand to stamp out the dog, it just was not his thing.
So Sally said, “Well, what if you had a recipe that people could take the dog treats home and make them themselves?” I thought, “I’m not sure how I’m envisioning this, but okay, thanks. I’ll look into it.” So I jump online and the very first recipe I see is in a ball jar, a Mason jar, and it just went off like a light bulb. And I thought, “You know what? Patrick could use his pouring device and make layered dog treats.”
So then I realized to make them look good, we could use Sally’s graphic designs to help us come up with a logo for Patrick, colors for Patrick, a name. She helped us, because at this point, I’m calling it Patrick’s Pantry, she came up with the Purely Patrick concept, which I loved, because to this day we still say it’s Purely Patrick.
If he gets a large order, it’s not about us hurrying up and doing it for him. It’s Patrick’s job and it’s purely Patrick. So she developed all the hang tags. She helped us with business cards for him. She was really instrumental. And so then we realized, well, dog cookies are great, but what about people cookies? And so we researched some other recipes, and then we threw a soup in there.
And so basically they’re cookie starters, soup starters. He’s now up to 22 different products. He started with five. There’s been some along the road along, pardon the pun, Rocky Roads did not make it. They were way too dry. And I thought, “Okay. We don’t need those.” Well, I do his QuickBooks, and so I really track what is selling well. But the whole thing I think kept evolving. And that’s my point is that’s the way I think like, “Oh, that didn’t work. Okay. That’s kind of working, but not really.”
So I don’t feel like you have to have the idea at the get-go because even, for example, shipping for Patrick. So eventually we said, “You know what? Patrick is selling at the inn, he’s selling it at a craft show here, and he’s selling at a farmer’s market here. What about an online presence?” And so his job coach helped us develop a website through GoDaddy.
I often say that if Patrick came across a lot of money, he would have a professional photographer versus his mom and her cell phone to take pictures of his things, but that’s not quite in his budget. So then when you have an online website, you need to figure out shipping. So that in and of itself was an evolution. We shipped in the ball jar to my sister-in-law in Colorado, just as a experiment. One jar made it, one jar was broken and there were lentils and beans all over the place. So we said, “Okay. That won’t work.”
So then we tried peanut butter containers that you can order just empty clean peanut butter containers. They looked like empty peanut butter containers, there was not a whole lot of wow to them, and they were bigger, and so you needed more nuts to finish it, more chocolate chips, more pasta. It was not real cost-effective for Patrick. So then we went to more of a plastic bag with a gusseted flat bottom. These were cellophane.
So again, we shipped to Colorado because that’s going to be by air as opposed to ground. And the seams popped open because it’s a non-pressurized cargo. So that didn’t work. And thankfully we’d only ordered 500 of them and not 5,000 of them. So then for a while, we taped the sides of the bags so that they wouldn’t pop, but that didn’t look too attractive.
And so it just kept going, it just kept evolving to the point where we then came up with the concept of a reusable water bottle, and was a 16 ounce equal to a pint? In reality, yes. Was the 32 ounce water bottle equal to a 32 ounce quart jar? Yes. And so we ship in these reusable BPA free water bottles that happen to have Patrick’s branding and logo on them, and that has worked really well for shipping.
We have actually taken it a step further, because Patrick is now selling his products to stores throughout Stowe. He’s in several different stores, and also across the country, there is a lot of stores that are selling products just made by people with disabilities and staffed by people with disabilities, which has been really exciting. But we wanted something a little more tamper-proof than a water bottle, which was sitting on a shelf unguarded.
So it’s not foolproof, but we ended up finding FDA approved barrier bags. So it’s barrier from sun, heat, humidity, moisture. And so when Patrick does his products that are being shipped to Nebraska, or Colorado, or North Carolina, they’re all going in these tamper-proof bags, and he gets the same label. We have an additional Purely Patrick sticker that goes on them.
Adrienne: It strikes me how much this has become a family business and that, like you said, it’s a lot of trial and error and a lot of creative thinking and trying different mechanisms to make it work, and that it has been an evolution. And I love that it started with this collaboration where you, as his family, knew that there was a particular hand motion that he did a lot of. His therapist at school was also thinking about different ways that he was using that motion. Was some of this happening while he was still in the school system, the early days of the business?
Mary Anne: Yes. So when he was still at the Maryland School for the Blind, that was the bath salt phase. Then when he moved to Vermont, that’s when we quickly realized the bath salt phase needed to phase out. We were pretty new at the inn because like I said, we were just getting our graphics done when we had the concept.
And so yes, probably not day one at the school, but I would say from maybe somewhere in the first part of his year, first year he was there, that’s when his one-on-one aid started coming to the house and making these products to see was it really something Patrick wanted to do and enjoyed doing, and could we sell these? So yes, he continued to do that.
We then got involved with a designated agency who had an employment coordinator, who helped guide us through the funding process in Vermont. It’s called Going to Equity. And so she took Patrick’s big plan of what it looked like.
And so she formulates that package, and then that employment specialist takes it to Equity, which I picture it being like a big table with lots of these employment coordinators from all over the state presenting to the state and saying, “This is what we would like,” and then granting it or partially granting it. We were very fortunate, Patrick was granted 25 hours a week of a job coach, which is exactly what we asked for.
Assuming that he didn’t need or want to necessarily work 40 hours a week, he needed some time to swim, do his adaptive skiing, chill out, get a break from his wheelchair and just chill out in bed, just to relax like we all need. So we asked for 25 hours a week and we got 25 hours a week. He’s not quite at that level now, but it’s not because of funding, it’s because of people availability at the agency, which is obviously chronic everywhere. I’m not sure I answered your original question.
Image courtesy MaryAnne Lewis
Adrienne: Well, no, I was just thinking about how school had helped collaborate with you through some of this process, which I think you did speak to, which is helpful. And I was curious what work looks like now for Patrick, which you’ve also been speaking to, because I know he also has a lot of other hobbies and occupations that he is doing for recreation. So could you talk a little bit more about what Patrick does for fun and how he balances work and fun these days?
Mary Anne: Sure. So Patrick works now Monday through Thursday. So Monday is a short day, 8:00 to 12:00. Tuesday has become a longer day because of the Friday piece missing. So Tuesday is now 8:00 to 3:00, Wednesday is 8:00 to 12:30, and Thursday is 8:00 to 2:00, so it’s different every day. Patrick’s Monday, Tuesday, Wednesday person has been with him for 13 plus years. So we’re very fortunate because they’re a very good match for each other and we’re thrilled to have her.
His Thursday component is brand new, and so we’re still on a learning curve with everything from how do you use the Hoyer lift, to getting medication trained from the agency. But so Patrick is fairly structured in those days. Sometimes he’s working on actually making products, so he’s using his switch. His job coach measures out the ingredients for him to ensure the correct ingredient and the correct quantity because honestly, Patrick doesn’t know a quarter cup from a quarter teaspoon. But as his longstanding job coach says, “If it’s in the jar, Patrick put it there.”
And so oftentimes he will go to the grocery store, the three of us, myself driving the van, I’m driving Miss Daisy. I’m driving the van with Patrick and his job coach, and we go to the grocery store for ingredients for his goodies. Or we’ll go to the hardware store because he needs more ball jars. We’ll go make a Michael’s trip, he has to go to the dentist, so we’ll sidetrack to Michael’s to buy more ribbon for his jars. So it’s not all production.
And sometimes I say he’s in supervising mode because when the labels go on, that’s a pretty intricate job, which his job coach does for him. So she counts his inventory for him every week, so Patrick is in the supervisor mode at that point. But in terms of fun, when he is not working, like I said before, Patrick loves to swim.
Last year we were fortunate enough to purchase a Van Raam OPair, which is an adaptive bike made in the Netherlands, very well engineered. It’s basically, I’m checking it out because the wheelchair part of it is now living in our living room, but the front of it is basically a wheelchair, a freestanding wheelchair, and then there’s a back component that hooks onto that that has the back bicycle. So it’s basically like a reverse tricycle. Kind of reminds me of a ice cream truck. And then the back is pedal assist, so it’s an e-bike, which is good because between my husband, the bike and Patrick, it’s probably easily 500 pounds.
And as you know, Vermont has a phenomenal rail trail system, we do not go on the roads, any one of us anymore. We stay off the roads. But the great thing about this bike is that it can be detached. So the wheelchair in and of itself is freestanding. Now it’s not quite as posturally, correct as Patrick’s ongoing wheelchair, his permanent, his everyday wheelchair. And it’s got really high handlebars because that is the handlebars for the bike, and there’s still a mirror attached to it, and it looks a little different.
It’s orange and black, and so it’s got a very different look than his other wheelchair. But if you’re on the rec path and you’re like, “Hey, let’s go eat in that restaurant,” or, “Let’s peel off and get ice cream,” you just very easily detach it and then it becomes a wheelchair.
Because the bike we had before, it was not a bike, it was a trailer, like a Patrick-sized Cannondale buggy, so to speak, which was difficult to get him in and out of. And you’d also get somewhere and Patrick was stuck in the trailer, and so this lends to so much more mobility. Patrick also does adaptive skiing. Patrick uses a sit ski or a bi-ski. So it’s basically a contoured seat mounted on two skis. There’s many different ways to do a bi-ski, a sit ski, Patrick is what they call guided seat assist, so Patrick is not able to weight shift to turn the ski.
He’s tethered for safety, but some people are just tethered and the ski is up ahead and you’re using leaning or your muscle tone to shift the weight of the ski to turn. Patrick is not able to do that. But honestly, keeping your chest upright for that period with that momentum, even in spite of the harness, and your head upright with a helmet on for two hours is exhausting. And Patrick really likes it. And they’ve been really working on we’re right, we’re turning left. And he has started to really look to the side where he is going to go. So he enjoys that, but he’s pretty much game for anything.
Adrienne: I have to say, it’s a far different picture than when you described imagining a medical day program and what that would look like. And I’m also just struck by how much it is, I would call it family occupation, that it these collective recreation activities that you do together. The biking, the skiing together as a family, the swimming.
Mary Anne: Well, and we really plan our vacations now that we have this bike. Last fall, we planned a vacation, we drove because it’s getting harder to fly with Patrick, truthfully, transferring him. We have switched to a mechanical lift at home, and when we travel, we miss that mechanical lift. The older we get, the more we wish we had it. And it’s getting very hard to load Patrick on and off of a airplane seat. And then you need an aisle chair, and that is a whole, people always bring a wheelchair and you’re like, “No, no, not a wheelchair, an aisle chair.”
And so anyway, we’ve decided it’s just about easier to drive than it is to fly. And so we set up a trip from here to Florida with rail trails in between. And so we would drive one day, we would ride a day, we’d drive one day, we’d bicycle a day.
And so I say we bicycled to Florida. Well, no, not really, but just about. And then at the end we had it planned to a T that we had one, well, I guess we gave ourselves two nights wiggle room, and then we did a Disney cruise because that’s the thing that works for Patrick. It’s noisy if he’s noisy, it’s not fine dining in the evenings. And it’s casual and it’s very family friendly and kid oriented. And so it’s not like we were on a Viking ship that was adults only. So no, he just is very much a part of our family.
Adrienne: Well, and I know you mentioned that your husband had been rooting for Florida at one point for some of the sailing and the beaches, so I noticed that that made it into your family vacation, which is great.
Mary Anne: But we’re glad to come back from there now. I will tell you that we’re happy with Vermont.
Adrienne: It’s beautiful.
Mary Anne: For all kinds of reasons.
Adrienne: I’m sure you’re asked this all the time, but advice for families, for people in Vermont that are thinking about, and for the healthcare workers and the school practitioners, just thinking about really supporting some of our kids with their transition planning and setting themselves up. You have done a lot of really creative trial and error, but do you have any advice that you would want to share?
Mary Anne: Well, I think in all honesty, for it to be successful, you do, it, being whatever micro-business you come up with or self-employment. And this is a growing trend, a growing theme for people with disabilities. But I do think it’s very imperative to have parent involvement.
There’s quarterly income tax, not income, sales tax that needs to be filed with the state and paid. And for Patrick, the only two things he has that are taxable are the non-people things, his bird seed and his dog cookie treats. So it only ends up being about $7 a quarter. It’s not very much, but someone needs to file those taxes and make sure they get paid.
Someone needs to keep a profit and loss statement, and a pretty close eye on that. Are we really bleeding here or are we making too much money? And does Patrick need a new pop-up tent for the markets, or a new tablet, a new printer, that kind of thing. So I enter his information into QuickBooks. And could a job coach be trained for that? Absolutely. Would that take away from Patrick’s production time? Yes.
Most of the time, his support at the markets is from George and I, or his respite provider. It’s out of the day, it’s not within the typical working hours of the agency. Would they be willing and able to find someone to help staff that? Maybe. I don’t want to push my luck and say, “You have to do an evening farmer’s market when I’m very thrilled to have you during the day and I don’t want to risk that.”
So I think the parent, and I’m sure I’m missing quite a few things, the parent involvement is key. Does the individual really like that activity or is it more your idea? Is it a marketable product? There is a great business plan, and I think it’s four people with disabilities, and I’m trying to remember who puts it out. It’s ASK, A-S-K: Achieving Self-employment Knowledge. And it’s a business plan, but it’s a really boiled-down business plan that really talks to people with special needs.
I think: What do they enjoy doing? What are their strengths and how can you build on those? Could they use assistive technology to enhance their job? I think the concept that I’ve said before of it’s okay to evolve. Don’t feel like the first idea you have has to be the one that sticks. As you can see, and I probably forgot, there was probably a few other plan C, plan D, plan E that I probably didn’t even mention. So it’s okay to evolve and it’s okay to continue to evolve. That’s the important nuggets I would take away.
Adrienne: And patience with staffing and a little bit of luck.
Adrienne: Can I ask, what are Patrick’s top sellers these days and where can we find his products if we want to?
Mary Anne: Good question. Patrick now has two items where he is paying it forward. So he has a Grandma Jo Snickerdoodle. My kids called my mom, Grandma Jo, and she had Alzheimer’s and she’s the one that came out to Colorado with us and really very supportive of all three kids. And then sadly, later in life got Alzheimer’s. And so this is her snickerdoodle recipe, and $2 from every jar goes to the Vermont Walk to End Alzheimer’s, and it’s the purple color for the hang tag of Alzheimer’s.
That one ends up being a top seller because I promote that at markets, and furthermore, so that one ends up being a top seller. A relatively new one within probably the last year or so is Patrick’s mud season munchies. And we’ve been trying to get more audience buy-in, more social media by help us name these cookies, this is what’s in them. And then we had a name that cookie contest. And then we chose, the job coach and I, chose our top three and then put it out for a vote. And mud season munchies won.
It was mud season at the time which probably swayed all of us, but they are very bumpy, lumpy, chocolatey, muddy cookies. And $2 from that cookie goes to support Green Mountain Adaptive Sports. And Patrick actually donated almost $800 last year to Green Mountain Adaptive Sports, and usually quite a bit to Alzheimer’s as well. Although I will say he does a separate Walk to End Alzheimer’s fundraising on Facebook, so people happily throw money at that. So it’s not necessarily that he sold 500 jars of cookies. So I don’t know if he understands the concept of pay it forward, but I like to believe he does. And I know George and I think it’s a good thing to do.
Adrienne: Well, I for one, definitely need some mud season munchies. So where can I go to find these?
Mary Anne: Oh, right, right. So Patrick has a website and so you can order online, you can do that, purelypatrick.com. If you’re local, you can do the pickup option so you don’t have to pay for shipping.
Adrienne: Mary Anne, thank you so much for your time.
Mary Anne: Oh, thank you.
Adrienne: I have been really wanting to hear more about your family’s story for a long time. So personally, I just really enjoy getting to talk with you. I have taken a lot of your time and I really appreciate your generosity. I have one last question, and it is a big topic, but you have moved also into a lot of advocacy work. And I don’t know if you feel like that is just a natural extension of your family life and your professional life, but could you speak just a little bit about how you’ve gotten involved and any advice that you might have for others that want to become more involved in advocacy?
Mary Anne: Yeah, that’s a good point. I’m not in any formal advocacy group, but I treat each and every craft show and farmer’s market as a educational opportunity. It’s always great for Patrick if he gets some mad money and can buy pizza and sell his products, because that’ll keep his business going.
But for me at a market, I’m more interested in that parent who comes up. And again, being in a high tourist area, that parent from New Jersey who stops and really reads Patrick’s poster that’s on an easel, and really looks at Patrick and really reads the sign and says, “This is really his business.” I’m like, “This is really his business.” “I had no idea. And what is this picture on his poster?” “That’s a sit ski.” “I had no idea.”
So I think for me, I’ve shared many a tears with many a parent who have just said, “Thanks for opening my eyes that this is a possibility.” And so I think it’s just a natural extension of being an OT and being a mom.
Adrienne: Well, I just really thank you for your time today, for all of your work with Green Mountain Adaptive Sports. Love seeing Patrick’s products out in the community, and thank you so much for sharing some photographs of him. I’m hoping that we can share some of those also for people to get to check out some of Patrick’s work in action and some of his recreation.
Mary Anne: And thank you for all your time. I really appreciated it.
