This week Mark Ostrom, founder and executive director of Joy Collaborative, tells me about his work bringing people together and designing for accessibility to create enriching spaces for youth – and how you can apply those methods and principles to your own home.
In this episode, you will discover
- That designing for accessibility is good for everyone.
- What kind of accommodations can make the most difference to someone with life limiting conditions.
- How to make creative and stimulating spaces on a budget.
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Listen to the podcast here:
Mark Ostrom On Spaces For Kids With Life Limiting Conditions
This episode is a little bit different than usual. I happen to run across this interior architect named Mark Ostrom and he’s doing incredible work. I’m going to read to you about the business that he started. Founded in 2019 on a shoestring budget and a career filled with colleagues, he officially launched Joy Collaborative. It is a group of passionate doers and volunteers who help create spaces for kids with life-limiting conditions.
These spaces are created through partnerships with the architecture and interior design community and financial donations from the corporate community. I’m impressed with what he does and inspired to think about spaces a little bit differently and as he says, do things a little bit better but tune in to my conversation with Mark and see if you’re not also inspired.
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Mark, welcome to the show.
Thank you, Katharine.
I appreciate you joining me. I can’t wait to hear more about what you’ve been doing with Joy Collaborative. I saw it on your website and I felt like I needed to talk to you. To me, it opens up more possibilities than maybe we think about on a day-to-day basis either for people who have particular needs or for the delight of all of us possibly. Why don’t you tell me a little bit about yourself, Joy Collaborative, and how that all came to be?
Create a space that’s safe and exciting for somebody who doesn’t have the same perception as you do.
I’m happy to be here. I hope to have a fun conversation around design and helping people. It’s a long story. It’s probably taken me twenty-some years to get to Joy Collaborative through my professional history and personal desires. My background is I originally went to school for music education. For me, it was all about watching kids succeed through the arts and I enjoy watching young people be creative. That didn’t work. There weren’t any jobs available when I was getting ready to graduate. I looked at some other creative endeavors and decided that architecture/interiors were where I wanted to be because I wanted to affect people more than I wanted to affect what a building might look like on the outside.
That intimate experience around space is what I was interested in. What’s interesting is when I originally went to school, I was working my day job at the University of Minnesota in the Cleft Palate Clinic in the Insurance Office of all places. My job was to process claims for families with kids with cleft palate. Cleft palate is when your upper lip doesn’t fuse and our clinic was very comprehensive in the services that we offered everything from surgery to dental care and occupational behavioral therapy so it was very expensive. I’ll get to Joy Collaborative here at the end of this but it’s the setup for it all. Dental and medical were refusing the claims and to this day, that is still true.
My job was to be an advocate for these families and I got excited about it. To have them come in once a quarter and say, “We got your $10,000 claim paid,” and they start crying and I’m like, “This is the best day ever. What happened here?” I come to find out that they missed a mortgage payment or they’ve got these other stresses around finance. You took the burden off of what is a very challenging process. That stuck with me very deeply. Several years ago when Joy Collaborative was starting to become a thing, that was one of the legs of the stool and the other one was passion around design. I was always a creative kid.
My first true-built design project was Rainforest Cafe here in Minnesota at the Mall of America, which hopefully most people have experienced in some form or fashion. It became a wildly successful property and is now owned by Disney. For me, it wasn’t about the financial success that they’ve seen. It was more about people are going bananas about taking them out of their normal world and dumping them into this very surreal experience. I’m sure, Katharine that you’ve run the highs and lows of architecture and the economy. I said, “I want to have my hands on the steering wheel. What can I do?”
I got to the point in my career where I’ve done retail projects like Mall of America, which has retail restaurants. I’ve done tons of commercial office space and a lot of hospitality. I got to the point where I’m missing the connection. With this empathy that I’ve got, I want to bring it more into an everyday experience.
I’ve got friends in the design community who are talented and they’re doing all this work for these public entities but they’re not necessarily doing it for individual families. Having spent time in sales and lots of happy hours with contractors and designers, I would talk to them afterward, “We did this Feed My Starving Children event or whatever it was.” It’s a great experience.
We can’t fault that organization but it was so far removed from what I knew their skillsets to be that I would ask them, “If we could do something like Joy Collaborative is now what’s your interest?” Everybody’s hand would go up and they’d get excited. I’m like, “Let’s figure this out.” Baby steps, I started doing stuff nights and weekends, reached out to Make-A-Wish and did some projects for them and that led to Shriners Hospital and Ronald McDonald House. We hit the pause button and said, “You’re onto something here. Maybe this wants to be a business.”
Joy Collaborative is a nonprofit. We are going into your number two of doing creative spaces for kids with life-limiting conditions. We partner with the local creatives and our community, contractors, interior designers and all the vendors to focus all those creative energies on youth that need some help in conditions, areas or programs that don’t have the facilities or the help to advance their personal cause or mission.
We define life-limiting as either someone with a medical condition, such as CHARGE syndrome, which we’ll talk about Kodiak’s room and poverty or homelessness. We’re working on a homeless teen center or a homeless crisis emergency center here in Minneapolis and some public facilities as well. That’s a long arc to your question but it’s the lead-up to what we’re doing now and I could not be more thrilled about what we have done and what’s coming ahead.
You started Joy Collaborative about a few years ago and I’ve watched a few videos showing the families that you’ve helped. First of all, let’s back up for a second to Rainforest Cafe. You’d worked on the design of that whole experience is that what you’re saying?
It was a very large team but I was part of that team.
That was so much fun to go to when my kids were young and it has now left our local mall but I appreciated that.
It was fun and by no means a star. That vision was set up a long time ago but we were about executing. It was about exploring materials. We were doing some crazy stuff as you can imagine to come up with some of the solutions there. One of my jobs was to research artificial products. At the time, I could have told you where the best fake bananas came from. They probably were from a sushi company in Japan. It was fun and highly creative. There was a story and education there and it became a destination and still is. It’s the highest-grossing restaurant property in Disney’s franchise. It’s sticking true to that vision obviously and with Disney’s support, it’s pretty exciting to watch.
Once you start reaching out and getting a reaction from people, you will start to see good things happening.
Tell me about Kodiak.
Kodiak is the name of the boy that we worked with. He was sixteen at the time. This came in through Make-A-Wish and he was born with CHARGED syndrome. Every letter in CHARGE stands for the different conditions that he has. It’s a very complex condition. There are 1 in 700 people in the country who have that diagnosis. He was cognitively delayed and was probably cognitively four. He was blind and deaf. How do we create an experience for somebody who is so sensorially different from you and me? Make-A-Wish came to me because the two previous designers had quit, which I found offensive.
I don’t know the reasons why and I’m not out here to fault anybody but it’s a huge design challenge. How do you create a space that’s safe and exciting for somebody who doesn’t have the same perception that we do? I said, “This is the reason I went to design school. I wanted the hard challenges. In every class I took, I liked that challenge and I can’t back away from this.”
We were super lucky because our design partners were Life Time Fitness and Gardner Builders, which is one of the top contractors in the region and they latched onto this project. It was very challenging and stressful. He’s got an interesting family dynamic and pets. He doesn’t have a full-body bodily function and he can’t communicate. Talk about a programming exercise and trying to get to that but the core of what we needed to solve was a multi-sensory room for him.
It’s a big design challenge. How did you even start with that?
He could express likes and dislikes in different ways. The family knows him. They live with him. Part of what we do at Joy Collaborative is the collaborative part of it. We bring people in who are experts in fields that are outside of the design practice. We had people who are with the DeafBlind Association and people from the cognitive side, all circling him and trying to figure out what was best. We put him in the middle of the circle, out of that are his parents and he had siblings as well. We could not ignore the siblings and give Kodiak all this great attention and what we knew would be an interesting design solution without bringing them into the discussion and the Q&A of that.
Some great things came out of that about spaces to be together and spaces to be a part of because he was monitored 24/7. There was always somebody with him. His house is locked from the inside so he cannot run away, which has happened. You can imagine how scary that is. To be a sibling and a young person having to watch a sibling for a good chunk of your life and not being able to get a break, that was something we wanted to do. We wanted to have a space that was safe for him that he could be in for a certain number of minutes or hours a day and be on his own.
Dad wanted a place where they could hang out together. Dad was a real outdoorsman. He wanted to do some physical stuff with Kodiak, whatever that meant to be. He asked specifically for a slide. We deal with kids with autism as well and this falls into that same bucket. People try anything to help their kid and they will do and find any product or material and be hopeful that this is something that provides some comfort. She was overwhelmed with the stuff that they had. They had a room designated for him. That room is only 14 feet square but it was exploding with stuff. It’s hard to create any interesting space when we’re trying to manage so much stuff.
We worked together to take a lot of that stuff out. We worked with Kodiak’s teachers to figure out what was meaningful for them and give them specific space that they could work at. When you’d go on any normal project, it’s like, “Here are some ideas about what we can do to this space.” It had to be super durable because he wasn’t always in control of his physical self. He would have accidents that were hard to clean. He would beat things up because he was frustrated but he also could be calm and affectionate. We wanted to be able to address those extremes of activity, provide materials that were durable and also find places that were comfortable for himself and his family.
Kodiak is his given name. Mom and dad are big outdoors Northern Minnesota people. Going down that Northern woods aesthetic is what we wrapped everything in but it was about, “What can we do here that’s a flexible space?” I don’t want to give him something that’s fixed. Multisensory is going to be important to him as he matures. We took that very small footprint and carved out a space for his teachers. He’s got teachers who come to his room a couple of times a week. They had dedicated lockable space to work with him.
We did include a slide but we also lofted the space and created a deck area. We created a xylophone of sorts out of copper tubes. That is a vibration thing. He was very into drums. We also did several hang points in the ceiling and have various climbing pieces as well as swings that can be detached. That’s where he and dad can hang out and do things that are physical.
Was it within the 14×14 room? Did you have more space to work with?
We had that room and a closet that was originally designated for some other things in there. We ended up tricking that out to be a sensory closet and storage because they had so much stuff. That eliminated a lot of need for storage although there is plenty of storage in the room to alleviate that. We were able to use that space but essentially, what you see in that video is that space of 14-feet square.
How did you address the people who are watching him all the time like the siblings? They could still play on the slides, the hanging bars and all that stuff.
We worked with the county and put Dutch doors in that room. That room originally had full-height doors. We put Dutch doors in there that are lockable and extended the height. They started with giving him fifteen minutes at a time of being by himself in that space. Kids could move somewhere else. They could do something else, get a little bit of a break and then gradually extend that time. Outside of that, there are sensory walls in there that they will play and work with him together on the upper lofted area. There are beanbags and other soft seating. He’ll sleep up there but then they’ll also cozy up with a sibling and read a book.
How long ago did you finish this project?
We finished the project years ago. The most powerful and rewarding aspect is when I talked to his dad last. He was very choked up, crying and he said, “We now are having friends over to Kodiak’s room. He has never had friends over before.”
This reminds me of Bennett’s Park. I love how that involved his friends, neighbors and people coming over and socializing. It’s so important. That is a huge part of life.
We go fairly deep in the programming. This is very personal stuff. We’re talking about experiences for people who have a lot of challenges. You’ll appreciate this. We get done with the project and we’re talking and interviewing the mom. She said one of her biggest fears has been not having any friends and that never came up in the initial conversations. Although we talked about social spaces, we didn’t talk about the long-lasting impressions of having friendships.
He lives in a block that has nineteen kids so they’re all traveling in a pack. Julia’s mom will tell me that there are times they have to turn kids away from playing there at Bennett Park because it’s the hottest spot on the block now and that’s pretty great. They have movie nights and game nights over there. It’s a very active space and it’s also helping him academically.
I’ve read about Bennett and watched the video. Why don’t you tell the audience about Bennett’s situation?
Start with the experiences and emotions that you want to try to and capture.
Bennett is a sweet kid. His smile will light up a room. Anybody you meet would say the same thing. He was a great client to work with. I call all of our youth clients because that’s who they are and he has very generous parents. He has spina bifida, which means he’s restricted in how he’s growing or abnormal growth.
He came back from his eighteenth surgery. He has got at least that many probably ahead of him in the next many years. There are very intense, constant changes in how they need to address him physically. The real driver for Bennett Park was as he gets older and his kids become faster or more mobile than him, he’s going to default to a wheelchair. That’s normal behavior for people with spina bifida because they can’t walk real fast.
They wanted to encourage as best they could muscle growth and physical activity for him that didn’t involve a chair. Everything we did in that space essentially revolved around what can we do to encourage him not to use that appliance. We worked with people like Courage Kenny, which is his physical therapy and occupational therapy group. We met with his teachers, parents and grandparents who were major caregivers for him and came up with this idea of a park. Bennett is a huge Twins fan. His goal in life is to be the manager of the Minnesota Twins. We’re like, “This is exciting,” but we didn’t want to design the room so heavily to be this one-trick baseball thing.
There are elements in there certainly of baseball and you’ll see that in the video but it was about what can we do? Can we do things that are involved his siblings, batting practice and things that are baseball that makes you stand? Is there a whiteboard in there that they can do art projects together? Are there collapsible tables and chairs that can be brought in? They like to do art projects.
There’s a huge display case in that room of all the different art projects that they’ve done either as Bennett as himself or with his siblings. All the backs of those cabinet panels are magnetic and whiteboards so they’re multifunction in that way. There are swings that are detachable in there and different kinds of things that he can do with his legs. There are monkey bars. We’re working on getting him past the third one. He could only hang there originally, and move past that.
There are stairs. He doesn’t like to do stairs so we put a mini flight of stairs in there to encourage him to do that. Outside of having bleachers in there that are comfortable and allow people to watch movies or hang out together, his favorite aspect is the Nerf gun wall. He’ll encourage anybody in there to play with him and that’s a great way to play without realizing what you’re doing.
That does sound like that would be a place for neighborhood kids to hang out. I can see why.
It can be a problem. Mom is very generous about that. There’s also a concession stand in there.
That’s over the top. I want to go hang out there.
It was his sisters. They’re younger than him. They like to play dress-up and do kitchen-type things but tying into the baseball thing was a natural way.
It’s perfect. What a great way for kids to come together and experience and now it turns out he’s too popular. He gets in trouble because too many people come over.
That would be a great problem to have.
It’s because of his space. That’s great. What’s next? Do you have a certain number of projects a year?
It’s organic. We did have a target this 2021 of doing half a dozen and we’ll hit that and be close to that by the end of 2021. With people like Bennett sometimes we have to take a pause because he’s got surgery, they’ve had a health setback or there’s something happening in the family dynamic that has to pause.
Looking ahead, we are splitting our projects 50% between individual families and 50% between nonprofit organizations that serve youth in the community. Up ahead of us, we are working on a homeless teen shelter called Bridge for Youth in Minneapolis that is tiring and is challenged with its space. It is not an exciting space for young people to go to and there are kids coming from a trauma that could get better space. Our pipeline is overcapacity. We’ve got more people in line that we can serve, which is, unfortunately, a good problem to have. We’re working with building up our teams and our staff at Joy Collaborative to address that.
How could homeowners think about what you’ve done to enhance these spaces and make them perfect for the people who are in there? What’s a lesson that homeowners could learn from your work?
I get frustrated when I hear people say I’m not creative. I have no idea where to start. I completely disagree with that. Creativity in some people is beaten out of them and they don’t realize it. They are creative and it may not be the way that you and I think about maybe visual space but they are creative in how they approach a problem.
We’re living in a time where people are stressed and at the same time, volunteerism is super high. Like a startup, bootstrap whatever your project is and reach out to your friends and family. Reach out and find an organization that you think might be able to help you and it depends on what problem you’re trying to solve. You don’t have to create a Joy Collaborative-type room but you can do something on the small and if you’re a family with limited means, there are people out there who can help you.
I am not one to go out to ask for money and things but I’m telling you, once you start and you get a reaction from people, it’s like an avalanche. You will see things happening. If you need to create a sensory board that slips under your couch because you don’t have a lot of space, people will get you things and they will help put that together.
If you need special products, put a Kickstarter together and share them with your friends. There are easy ways to do this that don’t cost you any money. It becomes more complicated and you get something that’s headed toward a joy room, that’s a little bit different and you probably want somebody like you, Katharine or somebody helping to lead that charge and coordinate all that. There are many ways to skin a cat. I say, reach out to your creative friends and you know who they are and start there.
It’s inspiring. I’m not a creative person but I feel like that would be a very difficult design problem but possibly more exciting than the typical work that I do because it’s addressing particular needs that people have and the idea of having a safe sensory environment.
People say, “I don’t have space.” It’s like, “We can carve out a space in a living area. We can do that. If you’re lucky and you’ve got a closet and a bedroom, let’s start there. Let’s call that a room, empty it and find a place for all of that stuff because this is going to be an important space to use. If you’ve got a double closet, that’s a huge bonus.” Start thinking about that as an experience.
Start with the experiences and the emotions that you want to try to capture and start there. If your kid’s sensitive to acoustics, you have their headphones but they have their blankets you can tack up in there. If you’ve got storage as an issue, talk to Ikea and see what they’ve got in their discount space. There are ways to be creative here. If you’re lucky enough to know an architecture and interior designer, reach out to them because they’ve got a lot of resources that are going to be beyond anything you’ve ever known about.
Anxiety is higher than it’s ever been and a great way to offset that is to help somebody else.
That’s good advice and people are wanting to help other people especially right now. It is a stressful time and people feel better when they’re helping other people.
It’s human nature to want to help somebody else. In general, that is the case and I read an article from Forbes that anxiety is higher than it has ever been. A great way to offset anxiety is to help somebody else and reach out for help. Once you get some ideas going, reach out to me and we can figure stuff out. Journal that or put a whiteboard up. There’s an autism tracker where you can track moods throughout a month and see if there’s a correlation between what intervention you’ve created and if there’s an effect.
I’m going to talk about autism because that’s an area we’re going to start working on a little bit more. I’m not a big fan of one-trick devices. There are catalogs that are an inch-thick of sensory devices for kids with autism or families individuals with autism. A lot of those are maybe a tube filled with water that has bubbles in it.
It can reset a mood but there are many ways to get after that same reaction. There are fantastic little portable projectors and if you can attach them to your laptop and other apps, now you have an infinite number of options. In our space, the ceiling is our greatest element. Think about if there’s a way to use that to project cool things onto the ceiling. You don’t have to go out and buy these super expensive twinkle light pads that’ll cost you $2,000 for a bedroom when for $50 you could get a projector. It’s this idea about creativity. Don’t do the default solution. See if you can think outside a little bit.
I love the way you think, Mark. I love these projects.
I don’t know if it started at Rainforest. That was a long time ago but through my whole design career, I’ve always said, “Is that the best we can do?” That came into play when I was doing hotel work because I would always joke about how they wanted amazing-looking things and we had to stretch a nickel. They had no budget and wanted amazing. How is it that we can do better and be creative? With Joy Collaborative, I am not interested in paint and sticker solutions. There are people certainly who are out there who will do that and they mean well to do that but for us, I’d rather get a functional solution and we’re not going to get that using that approach.
Paint and stickers. You could do better. How can people learn more about your work or get in touch with you?
Our website is JoyCollaborative.org. That’s where you’ll find all the latest and greatest. You’ll see a Joy Rooms tab, which will have videos in there of the projects we’re doing. There are a couple coming up before the end of 2021. Katharine and I are super excited. We’re doing one for a boy who’s quadriplegic and cognitively delayed. That’s a very cool sensory room.
We’re also doing a meditation relaxation space for Ronald McDonald House here and I’m very excited about those projects. It should be done yet this 2021. JoyCollaborative.org is where you’re going to run or read about our projects. The other fun thing that we did, and I talked a little bit about this is taking an atypical approach. We had our first-ever fundraiser. That wasn’t going to be in a hotel ballroom with tables of 8 or 10 eating chicken and wild rice.
The Joy brand is about design, fun and creativity and that experience is not any one of those. We turned it into more of a social hour and reached out to the creative community that helps us with Joy Rooms or is creative on their own and had an event that we called Barkitecture. This isn’t a new idea. We did not come up with this by any means but marrying it to a nonprofit was a new idea.
We had a number of these cat and dog houses that were all unique and custom-built by interior designers, architects and contractors that were auction items for us. We wrapped a whole experience around that and did very well. We had a great response and are already looking at planning Barkitecture 2022, which I’m excited about.
That is exciting. You could sell those and produce some cat and dog furniture. People who own cats and dogs spend a ridiculous amount of money on their cats and dogs a lot of the time.
They do. It was fun to see how people reacted to them. I do think in the world of cat and dog furniture, there is a void of creativity but it taps on the larger strategy for Joy Collaborative. I’m new to the nonprofit world but I’ve read enough about the typical path. I got a little frustrated and I said, “Why is it that we have to be so reliant on fundraising? Why can’t we create our revenue streams?” In 2022, we’ll be exploring whether it’s dog and cat furniture or something else. There will be other ways for us to provide more Joy Rooms and help more kids faster by looking at alternative ways of financial growth.
Creativity in some people can be beaten out of them and they don’t just realize it.
That makes total sense because then you have a steady stream that you can rely on and you spend more time doing the work you need to do and less time on the fundraising aspect.
It’s different exposure and ways of getting at people. I love this work and the tragedy is our funnel will never be dry. We do great projects. Why can’t this grow? There’s no reason this can’t grow. One of the reasons that motivated me in working with Make-A-Wish is they don’t typically do projects like this. Their model at least in Minnesota is around, “Let’s send people on this great vacation or a breakaway. Let’s introduce a celebrity-type person to these kids.” That’s great to create those moments but we have kids for who this isn’t relevant or that isn’t maybe as relevant or as beneficial. I know that we can help more kids.
Thank you for the work you do, Mark.
Thanks for the chat.
It’s been fun. It was great to meet you. I have one very irrelevant question. Did any dogs or cats try out the furniture?
Yes. We got a couple of photographs. One was my new friend Bentley, who is a little Toy Poodle who is in our La Chardonnay stay. It was made from a wine barrel. They had tried it out. I’ve gotten some nice photographs from families showing us.
I always get distracted by pet things. The work that you do for the kids is you can’t even put a value on it. It’s so great that you’re doing that.
I have trouble sleeping sometimes because I do get a little bit excited about what we do. We’re a growing organization so it’s great to hear your comments and know there are people out there who can track along. To your audience, if they learn something here, if they’ve been touched by disability or issues that we deal with, we’d love our sustaining members and like to do things special for them. Even following along and sharing our content as it develops is super helpful for a young but growing organization.
I wish you the best for that.
Thank you.
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I am genuinely inspired by Mark, his work and how he’s helping people. He’s helping the world be a better place. Thank you, Mark. Thank you for reading. Everything you could ever want to know about this show can be found on my website TalkingHomeRenovations.com. I hope you love this show and tell your friends all about it.
This show is now a part of Gabl Media. It’s the largest AEC network on the planet. Go check out the other show. They’re great. Go check them out at GablMedia.com and this show is a production of my architecture firm dEmios Architects where we believe architects are for everyone. Here in Massachusetts, I have asked an architect design helpline where I can help you with whatever you’re stuck on or give you architectural advice. I love hearing from people so get in touch. Also, join my Facebook group Talking Home Renovations together. We have previous guests on the show, architects and a lot of other homeowners and I’m hoping that we’ll be a lively community where we can all explore different topics together. Thanks for reading. Until next time. Take care.
Important Links:
- Joy Collaborative
- Mark Ostrom – LinkedIn
- Joy Collaborative – Instagram
- Bridge for Youth
- TalkingHomeRenovations.com
- Gabl Media
- dEmios Architects
- Talking Homes Renovations – Facebook
About Mark Ostrom
With nearly three decades in the architecture and design industry Mark took the bold step of combining his love for design and his passion for helping others into Joy Collaborative.
Founded in 2019 on a shoestring budget and a career filled with colleagues, Mark officially launched Joy Collaborative. Joy Collaborative is a group of impassioned doers and volunteers who help create spaces for kids with life-limiting conditions. The first Joy Collaborative space “Brave Bear” was created for Kodiak a Twin Cities child with a rare genetic disorder. The spaces are created through partnerships with the architecture & interior design community and financial donations from the corporate community. The Twin Cities 501©(3) expects to create up to 10 projects in 2021. The organization is enriched by partnerships with Lifetime Fitness, the Minnesota United, Twin Cities Orthopedics, and other generous organizations contributing to the well-being and advancement of youth.