Autism, Mental Health and Open Sky
with Margaret Tusz-King
Hello, April here! I want to acknowledge that I am currently recording and producing at home rather than at CHMA and you will notice a change in audio quality for the time being, but I wanted to keep bringing you relevant stories and information. In this time of having all of our routines turned upside down, I’m trying to do what I can to keep Ripple Effect on schedule.
Just around the corner from my home in Sackville, New Brunswick is a farm and community hub called Open Sky Co-Operative. Open Sky is an organic vegetable farm. It houses two delightful donkeys, two goats, many hens named Brenda and whose vision is to fill a gap in support services for adults who experience barriers due to social disabilities or mental health challenges. In the early years, Open Sky operated with two full time volunteers, Margaret Tusz-King and Norm Hunter, and many other part-time volunteers.
The focus was on establishing the farm and inviting individuals who had mental health and social development challenges to join in. It was critical in this initial stage to develop and demonstrate open sky to be a welcoming and healing environment for both day participants and live-in residents and to develop the farm facility to meet programming needs. My guest today is Margaret Tusz-King. Margaret is an engaged member of the Sackville community. She is a social activist and environmentalist, a former Town Councilor, and a mother of two adult sons with high functioning autism. Margaret’s Ripple Effect of being among the first wave of autism diagnoses with her children and effect this had on her career, her life and the necessity to advocate for them in the school system; acting as mother, educator, advocate, teacher, and therapist to her children led to a complete pivot in career. She went on to complete post-graduate studies in adult education and ultimately became a co-founder of Open Sky Co-operative to help other young adults learn independent living and employment skills with her husband, Eric, and others. Margaret joined me to tell story of her change in perspective how Open Sky was born and what led her here.
Margaret: This story of how we started Open Sky was, and I’ll talk about my family. We have a family experience of autism. Friends of ours, Laura and Norm would – we’d have dinner together – and we had kids about the same age. And so, you know, when you’ve got kids that are, you know, finished high school and going into university, you talk about how everybody’s doing and you know, became very clear that the trajectory of our families were quite different. With my family’s trajectory being you know, very much around looking for supports and resources for my, my guys. And you know, they’re talking about university and things like that. And I remember, you know because I knew that Norm was a wonderful gardener and wonderful working with people with disabilities, I thought, ‘Gosh, if only there were a place that were like a farm, you know’, cause one of my kids, when he lived with us, he would get up every morning like clockwork and look after the chickens, do the chores, you know, that kind of regulated schedule really worked well for autism. And so one of these nights when we were bemoaning the world and had probably one too many glasses of wine, you know, we said, ‘Gosh, wouldn’t it be nice if we, you know, if there were that kind of place?’ And so my partner, Eric just pulled out his computer and said, ‘Well, let’s, let’s draw up a business plan then.’ So four of us started looking into what it could look like if we wanted to develop a farm-based place in Sackville. They were people with mental health issues or other kinds of disabilities like autism could make up for all the things they missed.
When you have a mental illness, generally it develops when you’re in high school. And for most of us high school years or those years where we differentiate as who we into who we are, what we want to do and be as we grow up. And we build our independent living skills and things like that. And if you have a mental illness or you have a social disability like autism, your, your experience is very, very different. And so finishing high school, you probably have huge gaps in that skill set that you need for independent living or getting a job. So we wanted to create a place where we could help people catch up and we would have the kind of approach that works with them that that’s very different than how the school experience might’ve been. So it was, we did that for a couple of years. Two or three years we were looking at properties and finally the property that we’re on now came up for sale and we realized that was the place we needed to be.
So we really got organized. We decided to incorporate as a cooperative business because cooperative businesses have a very different structure around decision making and relationships that’s very equal and fair. And we wanted to have the bones of our organization to reflect the values we wanted to demonstrate in the world. So when we pursued the cooperative model and we pursued being a charity, we found that four of us who were from two different families couldn’t do it without others with us. So coincidentally one of my classmates from when I did my master’s in adult education, way back in the 90s lives in town, Melody and she works at the university and she does also work with a group with mental health issues. And so we invited Melody and her partner, Robert to join in. So the six of us are actually the founders of Open Sky.
We incorporated in 2011. And I was I left my, I was able to leave my previous job in a way that I could get some EI. So I had about nine months of EI to live on and we just we got the farm in, in March, 2011 and we just started farming. Demonstrating what we were doing, talking to the community, building our relationships. And over time we built the program around the experience of organic farming and gardening as a way in to non-judgmental experiences with other people and with animals into a way into having different experiences that will build a wide skill set that’s really, that are related to both life skills and employment skills. And then also having a beautiful place where the community could come and could develop new and more helpful understandings towards people with mental illness or with disabilities.
So that’s what we’ve been doing ever since then.
April: Okay. And have your kids taken part in the programming there or has, are they, they’ve moved on to other things?
Margaret: Well, they, no, they had moved, they’d long moved on. There, their father lives in another city and so they moved back there, so they don’t live with us. But they are aware of Open Sky. But they, they, they grew up in the city. I remarried when they were in middle school. And so it was their yearning to go back to the city where there’s a lot more things to do that don’t rely on your developing a social relationship to do them. So, movies, museums, you know, things like that. So, they have much more, of a rich life that they can manage on their own, than they would if they were here in Sackville where there aren’t the same opportunities. And, and just like most, most kids like them, most young people, they had a horrendous experience in their schooling. The school system is really not providing good supports. And, so we’re, you know, this year at Open Sky, we started a parent support group too because parents need a lot of support through this. It’s a very challenging environment for anyone who learns differently, unfortunately.
April: Yeah, I’ve been hearing, I mean, I don’t have firsthand experience with some of these struggles, but you know, a lot of my friends do and it is, it is heart wrenching to hear how they struggle and the – the impact it has on their own families, the extra stress, you know, the almost a feeling of powerlessness of not being able to get what you need. It’s, it’s really opened my eyes and his really you know, I have no idea what I can do. I can’t even imagine what a lot of these parents must be feeling.
Margaret: I remember just feeling like I wish somebody came to me and said, ‘Margaret, I know something that would help.’ And nobody ever said to me those words. My two were diagnosed in in the mid-nineties, and we were the first family with two kids diagnosed at the IWK Hospital. So in the Maritimes. So we were the head of the wave. Every, every teacher, every school had had no experience with high functioning autism. And so I was becoming, I had to become an expert. I had to in-service the teachers every year. I became out of noxious parent and I knew that, you know, being the obnoxious parent, never won anybody, any friends. I tried to pacify them at the school, but then my, my children’s needs were not met. I don’t know that they would have been met anyway. I worked darn hard as a parent.
I remarried somebody who also has adult education graduate training. And both of us looked at it as a learning project for ourselves on, ‘how do we figure out what’s gonna work and what’s not going to work with these guys?’ And that’s part of what the foundation is that has built Open Sky Co-Operative, was coming out of that experience and realizing that we did pretty well, you know? We, we met up with old friends from my previous city and they their kids are still living in the basement, you know, their kids didn’t with what was available to them, did not make the same progress that mine did. My kids live independently. One of them. This is, we’re in the middle of the Covid-19 pandemic, he’s one of the essential workers because he has regular work at a grocery store and… So, he’s one of the people who’s keeping the wheels on the wagon.
April: Yeah, keeping us all fed!
Margaret: Yeah, that’s right. Because you know what, he’s willing to work the 4:00 AM to 12 shift. He doesn’t need to be in the thick of social things. He’s happy to do the stock work. The, because for people with autism[ANSC1] , social things can be very, very draining and very demanding. So the kind of job that, where you just get the work done with very little interference that that kind of work works well for them. So he’s doing really well in that you know, so that’s good. So my, my two have live independently manage finances, they’re employable. Employment’s a challenge though, because most of our jobs, if you ever in probably my, my job ads are the same as yours, April, they say, you know, good communication skills required, right? And you know, people on the spectrum, that’s going to be their most challenging skill set is communication skills. So there’s not a lot of opportunities for people on the spectrum – who can be totally brilliant – but can make it make for a more challenging workplace that requires extra, extra good communication skills.
A lot of patience, a lot of, a lot of, I’m sorry, a lot of sympathy for all the families. A lot of compassion. These parents were doing everything. We have to be parent, teacher, care providers, psychologist, you know, you name it. That’s what parents are doing all the time.
April: Yeah. And I’m even seeing right now you know, parents who would normally work outside the home who are trying to work from home and their children are home full-time. And a lot of, a lot of my colleagues and friends throughout Canada are saying, you know, they’re burning out very quickly because they’re trying to parent and work full time and it’s impossible. And regulate, you know, kids whose routines are completely up in the air. And yeah, this, this is a really challenging time for a lot of parents.
Margaret: It very much is because you can’t invite the babysitter into your home, now. You know, even if you wanted to, there’s a lot of a lot of limitations for getting the kind of help that you, that you really need. And you’re right, the, the scheduling, the regulation, the routine, all that is so important for, for kids with any kind of a difference or disability. So it’s, it’s a, it’s a really tough time and you’re right. We don’t know, we don’t know how bad it is in some of these households. I do worry about that.
April: Yes. How many participants have you had through programming at Open Sky since 2011? A rough estimate?
Margaret: You know what, I should know these numbers, April! I don’t know, dozens, several dozen. But I don’t have a, I don’t have an exact number. Some people we’ve had such a variety of people in a variety of experiences or still, I still feel we’re young enough that every year brings us another dimension of learning that we need to integrate into our program so it can become something a little different. So, but we’ve had dozens through when we started. I didn’t, I actually worked for three or four years without getting any pay cheque because there was no funding for this. People are not looking for young adults after high school who aren’t out in the workforce. You know, they’re mostly in their parents’ basements, playing video games, getting days and nights mixed up and things like that. So we’ve had to carve out recognition of the value of what we’re doing, recognition that it should be paid. So we have right now about 15 participants for whom we receive some fees for services.
April: Have you seen people really blossom through this?
Margaret: Oh my. Yeah. And, and well, you know, like all of us, we’re, we’re working with adults. We’re not working with children, and all of us need to, when it’s time, make the choice to grow and change. No one else can make us do that. So for, for many, it’s a matter of consistently offering an opportunity to learn and change. And then when they’re ready, it’s there for them. So everybody has their own schedule. But we’ve, we’ve had and some of it may or may not even be the fact that we’ve worked with them and they’ve grown and learned something new. Some of it I think is our seeing differently. And I’ll tell you a story about that. We have one young man who has a disability and can be a little overbearing and you know, and wear people out and things like that because he’s very, very high energy.
But we were sitting, I remember we were sitting around a table, I think it was last year at Easter, and we had a we called her a volunteer – we couldn’t get any formal payment to create a program for her – so whenever people come to us and we were not able to get a full program for them, we say, you know, come as a volunteer periodically so you can at least appreciate the atmosphere and we can connect with you. So this woman was having a coffee break with us and we were talking about what we were going to do on Easter, you know, we went all around the table, there were about 12 or 14 people and everybody’s saying, ‘Well, I’m gonna, you know, have dinner with them or I’m going to have, whatever.’ And this one participant who’d had a gosh, April, horrendous life experience of a foster care and, and things like that, you know, was talking about what he was going to do with a foster family. And the next person was this young woman who was just visiting who said was a little sad and said, ‘Well, I think I’ll probably just go into the city and I’ll have dinner with my mom.’ And this young man who’d had the horrendous past turned to her and said, ‘That sounds really nice.’ And you know, all of us looked at him and we thought, my gosh, if you had a chance to have supper with your birth mother, that would be something special. And we all started crying because we knew. But you know, and for him he didn’t say, ‘Gosh, I wish I could do that.’ He had such a big heart that he shared with this woman who felt like that wasn’t very much. And so I think, I think some of it that I might talk about might be the way it’s transformed me and how I see people as much as I see that the programs have transformed other people.
April: Isn’t that a gift in itself?
Margaret: Oh man. And you know, if we, if we didn’t look at every day as a learning opportunity, we wouldn’t probably still be around because we’ve had, we’ve had a lot of great learning opportunities. We’ve had some really challenging ones. And, and that’s the way we’ve kept our ourselves fresh. And that’s how we’ve created something that we feel is pretty unique in, in North America. The role of the co-op – in a cooperative, a cooperative is a business that serves the needs or interests of its members. So Open Sky is there to serve members and members, can be participants, can be staff, can be community. So when you think of our membership being that wide and including those we serve, you can see that it really flattens the hierarchy really quickly in the organization. And so we want to model and experience the relationships that build the skills and relationships that they need for ongoing success. Um and I don’t think there is a cooperative that is set up this way. Working on farms is long been known to be therapeutic. You know, working with animals is non-judgmental and life giving for so many of us. So those aren’t new. In Europe, there’s something they call Care Farming in many of the Scandinavian countries and in England where the health services pay farmers to accept adults with mental illness onto their farms because they know that keeping people with work – busy with meaningful work – engaged with physical exercise and outdoors, those are all really a part of the, what they call the psycho-social rehabilitation model for mental health. Here in Canada, we don’t do that. We don’t pay anybody but a health care provider our precious health care funds. We’ve received zero dollars from the Department of Health for our services here at Open Sky even though we are doing mental health work. All of our funding when we’ve received it has come through social services through social workers. So, it’s not being recognized here, but the farming, you know, is recognized as a very healthy way for people to engage with a variety of challenges in life. And I also think about, you know, the, the stories about the old farms when you had a farm hand, the hired hand, who would be a single man who might live outside of the farm house who helped with chores? That might’ve been somebody with autism, right, who had a meaningful place. But we don’t have those meaningful places, obviously available for people who are different, so much in our society these days. So I mean that’s another reason we thought farming. So we’ve had a few of our grads get work on other farms too, once they’ve learned how to do that work at Open Sky, it’s one of the vocational streams that we would offer for people really interested in working with animals and plants.
So right now we have three of us in management. So I’m the Executive Director and I am the last founder standing. Everybody else has gradually made their way away and I am working on a succession plan. It’s really important that I’d be able to hand this over and that the organization survive without the founders. So I’m working hard on that. But I have two colleagues, Michelle is our Program Coordinator and you know, Emilie is our Farm Coordinator. And then we have five others who work as mentors. And then in the summer we’ll probably have, depending on what this – last summer we had six, six university students working with us as well, but this summer we’ll be, we’ll be lucky if we get two or three. We’re hoping we’ll be out there farming again. So that’s about the size of our staff. And then we this last year, I think we had about 36 people who came in more than once as volunteers through the year for different things. So we have a lot of people in the community we rely upon in order to bring their skills to help us keep Open Sky going. You know, so it’s a, it’s a big a big place. We always say it’s kind of like the center of the world. Everybody who needs to pass through Open Sky will, if we need to get to know them and, and it’s a great, it’s a great place. While you’ve, you obviously been there and know how beautiful it is.
April: Yes. Yeah. I mean, I can’t think of a better place to start the day sunrise and the sunset over the Marsh is honestly my very favorite part of the day!
Margaret: So, so I remember when you and I first talked, you talked about the role of having children and how that changes you. And I thought, ‘Wow, well yeah, I’ve got the, I’ve got that, that story too,’ because I’m, I was a pharmacist and I had, I was one of those women. I don’t tell anybody the experience I had giving birth because I would just, I would say I’m a walking, walking advertisement for birth control. I had some very challenging deliveries and then have had children with these challenge developmental challenges that persist, you know, as they’re adults. So it’s not something that they grow out of or is over and done with. So yeah, it’s totally changed my life when I was working as a pharmacist I couldn’t work full time. I needed to really work on figuring out what was going on with my kids and how to help them. And so I needed to work part time. And it took me a long time to find a job that would fit with also being a parent who could be called from school at any time kind of thing. And it was my experience in health care that I realized that health care knew nothing about autism, had nothing to offer, yet, going to the doctor was the way into getting help. And so I ended up leaving my profession and I went back to school and I did a Master’s degree in Adult Education. I’d also always been a bit of a social activist and had been very excited about the role of Adult Education and social movements and how we human beings learn our way through challenging situations. And I thought, ‘I want to know how to do that better.’ So my, my focus when I did my degree was on transformational learning and that really was a very strong underpinning for the work I’ve done since. I’ve done work with indigenous justice issues and I’ve done adult education programs for community programs and of course social activism and then creating new enterprises and organizations. EOS Eco-energy is another organization that we co-founded. Energreen Builders’ Co-Operative, which is a green building company, is another one. Open Sky Co-Operative, so you know, creating new structures that help you to demonstrate the values and approaches that you want in the world are really wonderful ways to, to take on social change. I think.
April: I’m curious to know how you balance all of this. I mean, I know your kids are grown now, but how did you manage, how did you manage all of this?
Margaret: Well, I only worked part time, right?
April: Yeah. But still, I mean, working part-time and parenting full-time is still a full life. And you’ve been a Town Councilor, you’ve been, like you said, you’ve been a founder or co-founder of all of these organizations. You’ve gone back to school…
Margaret: Well, I have, well I went back to school before I married Eric, but Eric is a really good partner. We met doing this kind of social justice work and we both have great respect for each other in the work. We work well together. We have a very similar framework of approach so we can very efficiently work together and get things done. So we have been married, this is our 20 years we’ve been married.
April: Oh, Congratulations!
Margaret: Thank you, yeah. So it, and, and it’s because we’re good partners. I couldn’t have done it without a good partner. That’s not, you know, not saying that things are smooth all the time, but we have tools to, to solve things. We’re both kind of, we do work a little too much, April I think. I’m getting older. I think I’m ready to slow down. I’m kind of enjoying this pandemic isolation, quite frankly. Just cause you know, I can just slow down a bit. I could…
April: I heard someone the other day refer to it as ‘the great pause’, and I thought that was a great way to look at it. I haven’t yet come to this place myself where I feel like there’s a pause, but you know, we could be in this for a while and maybe the pause will find us.
Margaret: It may be that you and I need to slowly, slowly work our way into the pause? Well, you know, it is, it’s, I think it’s learned behavior, but I’ve always been, I when I was in high school, every night I had something on, I was that kid too. It is a little bit of who I am. But, so that’s part of it, but it really is having a support system. You know, when I was, when I was struggling, when my kids were young, I was really, really lucky. I did not have any, not, this isn’t the lucky part – I didn’t have a lot of family around. I was pretty well alone, but I was lucky to have older women in my life and I would talk about them as my mothers and they were the ones who would ask me the hard questions like, ‘Are you sure you should be doing that, Margaret?’ You know? And I think we all need people like that in our inner lives. But I was really lucky to have these wonderful strong women and these are women who, you know, had done incredible things in their own lives but really had their, their feet on the ground around what’s important. So, I think I’ve been fortunate to have people – really good, caring, thoughtful people – around me too. Yeah. And I think my approach as an adult educator, which is you reflect on your experience, is also really important because as long as we take the moment to, to stop and think about what happened and what does it mean and so what do I need to take from that? We will always be at least rolling in a direction that that’s right. You know, that’s not going to take us down the wrong road. And we can, we can do as well as we can caring for ourselves and, and accomplishing the work we want to accomplish. But yeah, I’m not a good role model, not, not a good role model for taking breaks.
April: Yeah, no, neither am I. That is for sure. Yeah. But yes, having those, I mean, I, I also have a few women in my life whose, whose kids have now grown and have moved out who, who are amazing in terms of their reflective advice, which I’m very grateful for that because when you’re in it, you often can’t see it.
Margaret: Oh yeah, exactly. Your perspective is way off. So one of the women who was one of my mothers she said to me, and this was so wonderful, I’m sure I was only about 29 and she said, ‘You know, right after menopause, that was when I became most effective. There are those years when you’re still, well, you’re got the energy and you’re not bothered by any of the sexual politics, the, you know, all the dance you do with other people. You just focus on what’s important.’ She said she was most effective in her post-menopausal years. So that’s, that sort of was one of my, my beacons that I reached for and I, and that’s the time I’m in right now. I’m in those good years of having had enough life experience to, to matter and have enough independence to, to have the time I need to do the things I want to do. So it’s a real, a real gifted time for me right now. When my kids were young, I thought, ‘God, there’s gotta be some way that my training in, in health care, my Adult Education my experience in organizational development, all of those, at some point they’ve got to come together, don’t you think?’ And so here I am and they’ve all come together, you know, in a way that’s meaningful. So I think, I think our lives do make sense eventually.
April: Like everything, it makes better sense in reverse I think.
April: Thank you for making time for me today, Margaret. I really appreciate this. I think that your lessons bring a lot of value and I know Open Sky brings so much value to the community. I’m always happy to stop by there even, you know, there’s always someone I run into that I know and love and enjoy talking to. So it, it really is a, a community hub and a gift to this area. So thank you for being the woman that you are and for sharing your story.
Margaret: Well, thank you. April. I’ve had a pleasure chatting with you this afternoon.
I absolutely love how Margaret’s Ripple Effect combines an aspect of every pivot in her life. From a background in health to parenting children with exceptional challenges. Going back to school to study education and her social activism. All roads lead to Open Sky. A huge thank you to Margaret for joining me even with spotty internet. Please go to podcast.anointment.ca for show notes and links. You can find Ripple Effect on iTunes, Google play, Stitcher, and Spotify. If you’re enjoying ripple effect, I would love it and appreciate it so, so much if you would leave a review on iTunes and share our episodes on social media so we can reach more people. I’m your host, April MacKinnon. Join us again for future episodes. It’s always such a pleasure being with you today.
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