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Genia: Welcome to episode 007 of the Good Things in Life podcast. Genia Stephen here. In this episode I’m speaking to Linda Dawe. Linda has known me for most of my life. In fact, after we finished recording she reminded me that I’m still “one of the kids” despite the fact that Linda’s daughter Tiffany and I are in our 40’s. Kind of warms my heart really.
Linda Dawe is a founding member of Deohaeko. I’m going to read from the history section of Deohaeko’s website www.deohaeko.ca:
“Deohaeko Support Network is a group of families who came together in 1989 to think about and plan for good lives for our young adult sons and daughters. DEOHAEKO…refers to the name given to the Spirit Supporters of Life. It pays homage to aboriginal people who occupied this area since before the coming of the Europeans.
We began by thinking about where they would live in the near future – what kind of place would they come to call home and what it might look like. We thought about how our sons and daughters might live in much the same ways that their siblings were choosing to live. We knew that we wanted our sons and daughters to live in homes that were truly their own – safe, secure, unique and welcoming dwellings from which they would lead lives fully engaged in their communities in a variety of ways and in relationship with many other people who they came to know and who would appreciate their gifts and contributions.
After much research and discussion, we had a good idea of the kind of welcoming, typical place we thought would work best. We took advantage of a federal-provincial government cost-sharing arrangement to design and have built Rougemount Co-operative in Pickering Ontario.
And so, in 1994, Rougemount Co-operative Homes, Inc. became a housing co-operative envisioned, planned and brought to reality by this small group of Durham Region families who wanted to ensure a future for each of our sons and daughters with a disability within the heart of a welcoming community. Rougemount is a 6-storey, 105-unit housing co-operative. Couples, singles, young families, and elders of many cultures, abilities and backgrounds live together in a housing co-operative where they contribute in many different ways. Rougemount was built to meet the housing needs of over 200 people and to “house” the founding families’ vision of a community that would, intentionally, be welcoming.
What was most important to Deohaeko’s founding families was that it be a diverse community where people intentionally seek out ways to be good neighbours to one another. This intentional communityis at the heart of life at Rougemount. It is a shared responsibility, in which our sons and daughters take an equal part and, therefore, have been instrumental in the conception and design of the building and its community. They encompass a range of enthusiasms, interests, skills and gifts which they bring generously to the life of the co-operative. This active, diverse and supportive community provides a rich environment and varying levels of natural, freely given relationship, in which each person can achieve their hopes and dreams and pursue interests important to them as an active, participating and contributing member of their community.
For our sons and daughters, and for ourselves, Rougemount is not a residential option. It is home. It is where people are hosts in their own home, co-operative members with rights and responsibilities, and good neighbours to one another. There is no support service within the building, and no office for Deohaeko Support Network. Supporters work directly with people in their homes and in the communities, providing support in the events of their daily lives. Coordinators connect with people and families in their homes by invitation, and in their communities whether that be in places of paid work, volunteering, recreation or local establishments.
Deohaeko Support Network then, became the incorporated organization, governed by families, which exists to consciously think about how the sons and daughters of the founding families might best be supported to fully participate in the events and activities of their own lives within Rougemount and the broader communities. Deohaeko’s Board is separate from the Rougemount Board but includes seven of the founding Deohaeko families who envisioned and designed Rougemount. The Deohaeko Board of Directors is made up of the parents or designated family/friends of the now eleven members.
Our story is not about the co-operative, although this is a very nice place to live. It is about the capacity of families to be creative and innovative, to have a vision and follow it through. Families need the resources and flexibility to create and innovate. In this way, people will end up with a wide range of places to live within their communities in good ways. Let there be as many options as there are people.”
And now, straight into the interview…
Genia: I’d like to start by asking you to talk about when tiffany was born and or at the point at which you realized that she had a disability and sort of from that early stage where you were then and then how your vision evolved over time. Is that okay?
Linda: Okay. Well, I’ll just talk and you can stop me if I get carried away or irrelevant. Um, yeah. Well, when, when I was pregnant, um, I had type one diabetes – back then that was 45 years ago then that meant that, it was certainly believed at the time, that babies have suffered the consequences of mothers with type one diabetes sometimes. And it wasn’t entirely clear what those consequences might be other than they would be big babies, but it, it did require you to have a Cesarean section. And so, that’s a bit different nowadays. So that’s what happened. And, tiffany was born just as you know, this time of year, in January of 1974. At birth. Tiffany didn’t really cry and that, was a, a bit of a concern for me, but all things considered babies are sometimes born with quite high blood sugars and they have to be very carefully monitored and she was whisked away to the nursery because of what can happen. After living off my blood sugar, which might have been significantly high over the course of the pregnancy, she might suffer a low blood sugar pretty rapidly without careful monitoring. So I didn’t really see her for very long and um, when she was able to come and, uh, you know, spend time in the room with me after a couple of days. And back then it was a long hospital stays, especially if they’re a section. We were there for about 10 days. So over the course of the 10 days, um, you know, she was a quiet baby, a good baby. That’s what I called her, she’s such a good baby – which we all wish for as part of our vision! And there was some difficulty with breastfeeding but I didn’t, I asked some questions, I didn’t get any answers about anything, you know. I asked the paediatrician how she was doing and his response was, well, she’s, she’s doing okay, she’s doing fine.
Linda: And, so life just kind of carried on and I noticed about when tiffany was about six weeks old, six months old actually, that, uh, you know, um, there were just some indications that she wasn’t kind of reaching her stages of development that perhaps she should have been. And we had been seeing a paediatrician along the way. And so I started making inquiries at that time and, um, we went through, you know, x-rays and whatnot. And it was explained to me by the pediatrician that tiffany had a small head. And did anybody else in the family have a small head? I said yes, my sister did and tiffany’s great grandfather did and the kind of typical kind of thing. Um, and then, finally we were referred to a, when she was 11 months old, referred to a pediatric neurologist, who I believe, was under the impression that we had been given some information to kind of prepare us for what the possibilities might be, which wasn’t the case.
Linda: So it was kind of an abrupt diagnosis, delivery of a diagnosis of microcephaly and quite shocking. And, I think that, that something like that is always upsetting for parents. Um, and um, I think too, that, um, you know, all parents, all mothers particularly I guess, or I’m sure fathers too, but, um, you know, as soon as they know or perhaps before even a woman gets pregnant, I think that we kind of carry with us a vision of a life for any children that we may have or are going to have that vision in our head. And I think, um, you know, that that’s pretty typical that, that you start, if you haven’t already, you start thinking about what life will be like for your son or your daughter. And, you think in pretty positive terms. You don’t start out thinking, oh, it’ll probably be tough and hard and, you know, whatever.
Linda: You don’t think, I don’t have great family or great support. You’re always thinking in pretty positive terms. You want everything to be the best it can be. So, um, so, um, that’s the way I thought! And so that’s the way I thought. And so after tiffany being diagnosed as having a developmental disability then, I think, you know, there’s a space in time where you feel perhaps dismayed and not sure what to do next and probably pretty angry. Um, and uh, and I think, um, you know, for me, the, the part that was most upsetting for me was the fact that I felt a little, you know, kind of angry. Because Tiffany at this point was 11 months old and, and I think part of my anger was, you know, why didn’t I know this before because it seemed pretty apparent that from birth that this was recognized by the, by the medical profession.
Linda: But anyway, I think you kind of work through some of those things and I had wonderful family support. And I particularly was able to kind of get back to my feelings and my thoughts and my, my ideas around what life might be like for Tiffany just by talking to my mother who, um, who called to see how everything was, not knowing what, what had transpired in terms of the pediatric neurologist. And when I, I, I was crying and she asked me why, why was I crying? And I said, well, Tiffany, Tiffany is mentally retarded, which was the language back then. And she said, but why are you crying? And so I said to her, I’m afraid nobody will love her. And her response to me was, well, it only means we will just love her more.
Linda: And that was kind of thing that, after, that everything was okay. It was like I can now go from where I was instead of where I am. And so, um, and so that, that just, um, you know, the question I asked myself is, you know, do I need to let go of the life that I envisioned for my daughter and the answer is st pretty clear to me is that you don’t need to let go of that because other people share that. You know, like other people share that with you. And they’ll be there for Tiffany in the same ways as if this had never happened. You know, I didn’t find it difficult to, to have that vision and kind of, you know, go with that and pursue all those, those kinds of things that I had previously thought of.
Linda: But that would have been a difficult endeavor were it not for the people, the people around us and the people that I came in contact with. Because there’s just so much that can interfere with you being able to pursue the kinds of things that you want to pursue. Certainly at that time it was a, I think it was, I think there was a kind of a general idea that once you got the bad news, so to speak, that that kind of… just wasn’t, um, much that you could do about this except kind of accept it and perhaps think about where this child could be or where the child could go. And uh, there, there wasn’t, there really wasn’t anyone who said to me, you know, there are nursery schools or programs in the community or if you contact…, that certainly that didn’t come from the family doctor. It was more of a sympathetic, um, kind of what can we do in response. I, I was watching tv one night and there was an advertisement on, for about, um, people with disabilities and they said, contact your, it was an American channel, I guess like contact your American Association for Community Living or for the mentally retarded. And I said, there must be one of those in Canada and I just get out the yellow pages. I’m really dating myself!
Linda: And I looked and sure enough I found the listing for that and I called that number and they referred me to another local number and I ended up meeting this wonderful, wonderful person called Earla Wilson, who just recently died. She came to the House and sat at the kitchen table and that was my, my first kitchen table experience. It was really quite wonderful because we just had kind of a mother to mother chat. She was person who started the little nursery school in a church basement. And those were the, the people that I first came in contact with. Back then it was, um, you know, it was a little like a little nursery school with some teachers who were, who were paid and um, but a lot of women who volunteered. And um, so, um, those people kind of became a little circle for me. These just were, these were ordinary people who were extraordinary. And um, just because, um, first of all, for me it was a, a very, um, their idea of Tiffany and other children, other little children that were in the nursery school at the time and um, and their responses and their way of interacting and everything was just like quite ordinary, great, ordinary. They were children and they just need what other children needed.
Linda: So was that idea that, that these kids were just kids and that they needed what all kids need. Was that a lesson that you needed to learn at that point?
Linda: Well, I think what I needed, the fact that they thought that way was what I needed. Like I, I think that I, I felt that, you know, that’s what Tiffany needed. But up until that point, I wasn’t sure that I thought that people thought that, you know, or anybody that you would expect would give you advice and give you direction around what you should do? I thought that, they only were able to talk about something that didn’t sound right to me for a child. Like finding a place for Tiffany to be and not having much hope for the future and that kind of thing. So these, these were people who, you know, just carried on and even though this was a, you know, a segregated setting, um, the people within that setting, we’re, um, were everyday people. The most of the people that were, you know, hands on with our children, you wouldn’t call them professionals. Back then, a lot of women still weren’t in the workforce and so they volunteered a lot, maybe a lot more than nowadays I think, probably, certainly in different ways. And they were just mothers themselves and so they just, they just, you know, instinctively they, they operated as mothers and so, and I think you know, that that was not only what I was looking for, but I think that’s what needed to happen. Obviously we know that now, right? (laughs)
Linda: Yeah. Where were you living then? Were you still living on the east coast of Canada or were you already in Ontario?
Linda: We were living, living in Whitby. We were living in Whitby. Yeah. Yeah. Tiffany was born in, in North York. We lived in North York when she was born. Okay. So, I can remember putting her on a bus and oh my gosh, she was, she was 19 months old. So she was 11 months old when we went to see a paediatric neurologist. And by the time we figured out we had moved from North York, to Whitby and I made contact with this, with Earla Wilson. And then in September I put her on a bus and I immediately got into my car, which I really didn’t know how to drive! I was a new mother and a new driver, all at the same time. (laughs)
Linda: I and I followed the car, uh, the bus to this church, St Paul’s St Paul’s United Church. And it was the day I saw them take children off the bus and take them in this side door. And I crept down the stairs and they were kind of, kind of a curved stairway and I could go partway down and kind of get an idea of what was going on without anybody seeing me. And I did this for a number of days. And um, anyway, one day I went down the stairs and I could hear this, I’m seeing a woman singing and I went further down the stairs and I could see in a side room there with this woman sitting and all these children kind of in a semi circle around her and she was singing, I’m, you know, I’m naming each child. So she would say Teresa, Teresa North where are you? Here I am I. Here I am at Nursery School!
Linda: And some of the children could kind of sing back a little bit to her. And Tiffany was at the end of the row. I don’t know why that bothered me, that she was at the end of the row. (laughing) Okay. Anyway, so, um, anyway, but Tiffany was like leaning forward and just really indicating that she wanted to be next. Right? And there was this wonderful woman, her name was Freida Raleigh, and she had, she just had the most beautiful, beautiful face. Um, and you know, that just kind of seeing that and hearing that and just, um, uh, you’re just, I just knew that, you know, Tiffany was probably in very good hands and I probably didn’t have to sneak down the stairs. But they, they always knew I was there anyway. They told me later that they knew I was! So that was, um, that was, that was a really good beginning for us. And um, and it was a, you know, children went swimming, there wasn’t a lot of, a lot of what went on, went on in the church basement. But they went swimming in the community pool. And it was the beginning of maybe there being a little shift around how things were thought of.
Linda: I just want to add that just at this moment, I just want to ask you… For parents who didn’t have, who, when they found out that their child had a disability, didn’t go back to thinking that their child’s… That they could still have the same vision for their child and when people were being told to find a place for children to go, what did that mean at that time? Like what happened to the kids whose parents didn’t have a vision? Who weren’t as clear…
Linda: Well, I, you know, what, I think it’s just more complicated then they didn’t have a vision. I just think that it was kind of like the time we were in.
Linda: Yes, of course
Linda: Maybe there was a thought that, you know, medical doctors or other medical professionals knew best, or whatever. But I think at that point, yeah, there was, there were still people who were kind of going along and placing their children. But I think I, I think it was, I think we, we were just in a new time, it was 1974. There were, there had already been some, some really good work done at, you know, opening schools and nursery schools and that kind of thing. And they were. And it was good. It was, it was good stuff. I think that probably parents and other people maybe were in a position of having a different vision. I think the ladies in the nursery school had a different vision. I think the teachers that were there and the volunteers had a different vision and could think of, um, you know, many more possibilities for the children because I think they were, they were seeing this, they were seeing that children were thriving by having, you know, this same experience that maybe other little children their age would have.
Linda: And, I think that having the family to family support, we made great friends back then, you know, with other families. But I think people that just received this news and maybe a recommendation of what they needed to do. I think that’s what they did. And I think that, that some people, just decided that wasn’t going to work for them. And other people decided that yes, it was what had to happen. I think that they just hadn’t come upon someone who could help them just hang on to what, you know, what their dreams were.
Linda: I certainly wasn’t in any way trying to imply that that parents were sort of ultimately responsible for having a vision or not, or making bad choices. What I was honestly just trying to get you to talk about is what does having your child “placed” mean in 1974? If nobody had helped you, if your mom hadn’t said it’s okay, don’t give up, on your dreams, if you hadn’t met Earla, you know, what was happening for kids?
Linda: Well, I, I think that, you know, that there were good things happening. I don’t think everybody had the opportunity to find out about them and, but I think that that was part of what was happening back then. And I, and I, and I think that for the most part that we moved on from there.
Linda: I think what I’m trying to get at Linda is that most young parents today might not know what, what the alternatives were. Like you’re saying that that’s where we were and what we’re moving towards, but I don’t think people know what you were moving away from. Young children were being placed in sort of guardianship, um, situations like institutions or children’s hospitals. And it’s that piece that I was wanting to talk about. Just because I don’t think people understand, people may not understand. They may not be aware of what was happening to kids at that point.
Linda: Well, and I think, I think probably what they need to be aware of is it could happen again.
Linda: Yes, that’s an extremely important point. And I think that that is also what I was hoping to kind of get to at some point is that it is happening again.
Linda: And, and in the same way that it wasn’t a parent’s fault in 1974. I don’t think it’s a parent’s fault now either. Moving in a different direction does choose, excuse me. Moving in a different direction does require understanding that there is a choice and having a vision of what that other direction might be.
Linda: Mmhmm. Yeah. So, I just think there’s all kinds of dynamics that are present nowadays that may well shift, um, things the other way too. But I just think its kind of the world we live in Ahh. I’ve had a couple of experiences with families who have a child or children with, you know, disability, some autism, you know, another with down syndrome. And these are people that I’m relatively close to and they really have very quickly got immersed into services. I’m not very familiar with those services anymore because I’ve not been in that world for a long time. But, when I try to have some conversation around some kind of connection for them, and maybe I don’t do a very good job of it, but how they can get connected in ways that will ultimately provide, you know, more opportunity or different ways of thinking about things than what they’re talking about now they feel very reluctant. I think because they think, well, I’ve got something. Like, is this person telling me to give this up to do this kind of thing? You know, that’s kind of worrisome because, in my mind, the, the route they’re going is, is somewhat restrictive. It, it puts some barriers around, you know, what the possibilities could be for that, for that child.
Linda: Can you expand on that?
Linda: Um, well, I, I just think that there just isn’t the same opportunities for families to really have an outlook beyond special. Special programs or special therapies or special whatever, and just try to think more in terms of the ordinary. And I think the other thing around it for me is that.. We can have a really positive vision for our son or daughter’s life, but ultimately it, it can’t go where it could go without people. And so I think that sometimes that people pursuing particular things that keeps their children out of the mainstream of life so to speak, is that you’re limiting the number of people and limiting just the possibilities that could exist around the kinds of relationships that enhance all of our lives and that our children need as much as anybody else. And sometimes more than, more than other people. But just the kinds of relationships that, that, you know… Or, just the fact that they are known, that people are known. And that, that means that people are safer when they’re known and that people are seen for, you know, who they really are rather than just a, a child with a particular disability or a diagnosis or a set of limitations.
Linda: That’s what concerns me is that the families sometimes don’t have the opportunity to be part of that, that thinking and at the same time, at the same time, when, when you are a part of that thinking, it’s a great challenge. It’s a great challenge. I mean, for us to be trying to pursue that kind of life, or to hang on to that vision and, and, and all the things that go along with that. Because whatever vision we have may not be, they may have nothing to do with the vision, our son or daughter has, right? We have to be, we have to be really in tune with that. So, and you know, and this whole idea of connecting with people and making that happen, thinking about that, you know, it’s a great, a tremendous challenge.
Linda: And depending on the experience of the families, they may feel that these, the way that these programs and services are the answer in some people’s minds. It’s a form of protection. Yeah. Yeah. There’s a perception there. Children are safe and understood and they’re getting the therapies they need and, or whatever. You know, I have a sense if I’m talking to people and saying, well, you know, maybe maybe this, maybe that or whatever, that there’s always that sense of, well, I don’t know what that, that is, but I know what I have. And that’s what my child needs, you know, because the people have told me that. People who know, tell me that. Yeah, the experts have told me that. Yeah, yeah.
Linda: You know, when we’re talking about vision that, you know, you don’t sort of come to the end of that? That, you know, the kind of a vision for a good life and a satisfying life doesn’t stop at a certain point in time? It might for some people, but I think that that’s something that, you know, like as, as humans, that we, we tend to keep hold of, you know? Right.
Linda: And it evolves over time. Over time it changes and it is challenging and it’s difficult. But, if you don’t have the opportunity then it can be a pretty frustrating experience. I just think the other thing that Tiffany and other people having the opportunity to have their own home, you know, it changes the perceptions and the attitudes of people around who might think, well, this isn’t something that’s really possible for people who, um, are like this, these kinds of people. I think that people are learning that better and better. I think that’s a contribution that our sons and daughters bring with them is to help people to grow in their understanding and their acceptance and changing the hearts and minds of people.
Genia: Linda, if you had advice to give young parents of kids with intellectual disabilities, what do you think you would tell them? What advice would you give?
Linda: I would just say, really be, just be very, very open to what the possibilities could be for your son or daughter and listen. Just listen very carefully to them and you know, and not, and not kind of falling into the, into that trap of someone saying that your child wouldn’t be capable of this or that other thing. Because I don’t think that any of us really knows that about ourselves even without having the opportunity, to a certain degree, to explore that. We can’t, you know, we can’t do everything, we can’t make everything happen that we’d like to have happen. But I, I think that we just have to listen and observe and invite, invite other people to help us and take advantage of those opportunities. Not limit, not limit ourselves. And I think if we don’t limit ourselves then we probably, won’t, you know, limit our children. Having said all that, there’s, there are limits in life. But we just have to try. And I think parents generally end up doing the best that they can do.
Linda: So. Yep.
Linda: I think because of this, this world we live in and the world that we probably always will live in because we’ve always lived in this world, there will always be limitations that are placed on our children, but that we can, we can do all that we can do to work around those or find other ways. So yeah, it’s all worthwhile. It’s very worthwhile.
Genia: Well Linda, thank you so much. I’m really grateful for your time.
Genia: There are a few things that strike me about Linda’s story. Early in the episode she talked about how her mom’s response to her fear and worry really set her back on a positive path. I had a similar experience. When Will was only days old, a couple of doctors came and examined him. They told me that they thought he had a particular syndrome and they made it seem awful. I already knew that Will had disabilities but the information they gave me really through me for a loop. I called my mom and was crying so hard that she couldn’t understand me. When I finally calmed down enough to explain she said, “Oh for heaven’s sake, Genia! I thought he was dying from the way you were going on!” So, you know. It sounds like Linda’s mom was a little gentler than mine in that moment. But it really underlies how influential the important people in our lives can be in bringing us back to ourselves and our values.
Linda mentions over and over again how important her experiences and relationships with other families have been. I agree with her. I think that connecting with like-minded people around a shared vision of a good life for our loved one with a disability is important and valuable.
I hope that Good Things in Life can be that community for you. Join me in our Facebook group at goodthingsinlife.org/group.
I look forward to seeing you there!