[The Well Endowed Podcast theme music plays] 

Andrew [00:00:25] Hi everyone. Welcome to ECF’s The Well Endowed Podcast. I’m Andrew Paul. Edmonton...

is full of generous donors who have created endowment funds at Edmonton Community Foundation. These funds are carefully stewarded to generate money that supports charities in Edmonton and beyond. On this podcast, we share stories about how these funds strengthen our community… because it’s good to be well endowed. 

[00:00:46] On this episode, we learn about the Wade Screpnek Speech Therapy Fund and how access to programming helps people with Down Syndrome build community. Before we get started, listeners, take a moment to think about the people in your world who support you. Maybe there are people from your family or friends you’ve grown with or caring colleagues… or maybe even a brief encounter with someone you didn’t know, but who made an impact on you. The people who root for you, help you, and celebrate with you. It’s wonderful to feel loved and supported. It is a part of how we shape community. And I’d like to introduce you to Betty Screpnek.

Betty [00:01:20] My name is Betty Screpnek. I’ve lived in Sherwood Park, Alberta for the majority of my married life.

Andrew [00:01:28] In February of 2023, Betty and her husband, George, created a fund at ECF to celebrate their son, Wade, on his 50th birthday. It is the Wade Screpnek Speech Therapy Fund. The purpose is to assist families with the cost of accessing speech therapy. Currently, the fund will go to support the Edmonton Down Syndrome Society.

Betty [00:01:46] Yes, it will. We have thoughts about it and we may extend that to other locations that do training with persons with intellectual disabilities because it might be an opportunity for them to apply for it through the Edmonton Down Syndrome Society, even though they’re not associated with it. So yeah, it’s a work in progress, but that’s where it is right now.

Andrew [00:02:07] This year, Wade will turn 51 and he deserves to be celebrated. Betty’s eyes are sparkling as she talks about her son.

Betty [00:02:13] He’s a compassionate young man, very spiritual. He loves the fact that he works and contributes to society. He loves to volunteer. He has, uh, done things like Movember, so he grows his mustache. And, um, he loves family. He’s very, very close to his family. Our family isn’t big, but he’s very, very close to it. He’s very sports-minded as a participant. Special Olympics, he was very active in. And he hung up his skates, he says, at floor hockey. When he turned probably 40, he-he stopped. But he watches TV and loves watching, uh, the Oilers play, of course. And now the Elks is his other team. 

[00:03:03] He loves to dress. He’s quite the fashionista. Yes, he likes name brands. He’s a shopper. There’s no question. He’s a shopper. Yeah. And because he works at Festival Place, which is live theatre and concerts, uh, right in Sherwood Park. He’s been there for almost 20 years as a day porter. He applied for the job himself. Yes. And he’s been there, uh, doing— welcoming the, uh, concert artists. He does some janitorial work. He’s taken four years of Citadel Theatre acting school. And so part of that training is extremely useful for him, um, as he does his job because he understands stage and costumes and how everything needs to be set up.

Andrew [00:03:54] Wade was born with Down Syndrome and their journey as a family is what inspired her and George to create the Wade Screpnek Speech Therapy Fund.

Betty [00:04:01] Well, you know, when he was born, it became clear to us that speech was gonna become difficult. And, uh, I realized that was not just, um… just because there was a speech issue, it was more structure of the mouth and the tongue. And so, uh, there’s a way of exercising that to… to do better speech and project and certainly to pass your messages across. And so we started, uh, the speech therapy with somebody that does speech therapy in Sherwood Park. It was very expensive. And… you know, 50 years ago it was, uh, tough on our budget, that’s for sure, ’cause there was no support whatsoever. So now I see these young, beautiful little children with Down Syndrome, and some of them are speaking better because they are in speech therapy and some of the children come from large families, or larger families, and they maybe can’t afford it. And so I’ve seen what it’s done for Wade and, uh, George and I thought this was a great way to celebrate his birthday, to pass it on.

Andrew [00:05:14] Speech therapy had a big impact on Wade.

Betty [00:05:17] Well, you know, he’s, uh— he’s very expressive with hand motions an-and facial expressions and stuff. And speech was really, really important for him to get his message across. He really wanted people to understand him. And so he is very intuitive. And what results from conversations with people is he would see that they didn’t understand. And so our close family and friends, I’d say, “Just ask him to say it a different way. Slow down.” So that speech therapy that he was able to take, he could carry on. I think it’s… it’s very difficult when you can’t express yourself and say what you want to say. 

[00:06:02] And so what the speech therapy did for him is gave him a chance to step back, think about what he wanted to say, and then he could slow his speech down so he could get his point across. And it also gave him the confidence that he needed versus just sitting there and not participating in groups, at dinner, anytime with the family. So instead of pulling out, of course, you pull in when… when you know people are understanding what you’re saying.

Andrew [00:06:39] Feeling understood is a huge part of making connections with people. It’s a huge part of belonging. Let me introduce you to Janet.

Janet Tryhuba [00:06:47] I’m Janet Tryhuba. I’m the Executive Director with the Edmonton Down Syndrome Society.

Andrew [00:06:52] Janet tells us about one of the things she loves about working at Edmonton Down Syndrome Society.

Janet [00:06:57] We are blessed with… with wonderful people coming in to experience our programs. Interacting with our staff right now, we have some fantastic educators that are, uh, delivering our day program, mostly to adults and, uh, young adults as well. And just seeing the joy on their faces, watching them smile and have a ton of fun in the program. It’s… it’s educational, but with a big dose of fun attached. They… they are learning and engaging and speaking and communicating with their friends. They are dancing and listening to music and performing at times, and just all kinds of ways of communicating and expressing themselves.

[00:07:38] Um, my joy is not just watching and meeting them when they come for the day and saying goodbye when they leave for the day, but I get to slide in and be part of it. I might jump in and be part of the dance party for the, you know, few minutes at the part of their program. We might have something that we’re sharing. Maybe we share our meals together and, uh, just have a wonderful experience. Literally every day there is something that I get to, uh, be part of and just share in the joy that’s taking place in that special area of our facility so. 

[00:08:08] It’s very bright and colourful and, uh, full of joy. And as I was saying when I arrived, someone new just walked in our office and I had a chance to interact with someone who was a grandparent— or both of them are grandparents of a little boy, a 1-year-old that, uh, has Down Syndrome. So they want to be part of us so they can join in the celebrations and the resources and connect with others that are like them and supporting their family with a person born with Down Syndrome. And that brings me joy too, just knowing that our circle is getting bigger and people want to be part of us and, uh, we can help in some way and make that, um… that family a little bit larger and reach out and support more and more people. So that’s been a wonderful part of the journey.

Andrew [00:08:50] Edmonton Down Syndrome Society is all about making space for community and belonging. Speech therapy is just one of the programs offered to help people build connections.

Janet [00:09:00] So we have a number of speech therapists that, uh, are on contract staff with us. And how it works is a family typically is having a conversation with our manager of family services. And through that dialogue, they discover if there is a need for speech therapy. And basically the family manager looks at the schedule and thinks about the specializations, perhaps, of each of the speech therapists, and then works out the right contact and establishes a contact and makes a relationship connection with the— the family, um, with their family member with Down Syndrome. And again, just collaborates with the schedule of that therapist and makes a time work for that family to come into the centre. We have a, um… a space for the therapy to take place. So there’s, um, adequate space and room for interactive play and conversation and using some toys and equipment to help that speech therapy, uh, session take place. And so we book the therapist with that family member in the time that fits for them.

[00:10:05] You know, we actually offer it for all ages. And the therapy typically will start, you know, in those years when the— the little ones, the toddlers, are starting to form words and starting to form their language. But it would progress a little bit further on when they’re maybe closer to school-age and into their… their early years of school-age education. And then we also have needs for it later in adult life as well. So— but it is important to capture their time when they’re fairly young and work with those children before they form too much of their speech and language, uh, development. And so it’s… it’s the earlier, the better in some cases and then maybe fine tuning as they’re growing older and, uh… and developing more language and more vocabulary and… and need some, uh, refinement and some special training, things that they can do at home.

Andrew [00:10:59] Janet tells us about how people respond to the speech therapy program.

Janet [00:11:03] The biggest outcome is that that communication is strengthened and their vocabulary and their— their— just… their overall well-being is improved because they can communicate better what their needs are, what their wants are. And… the family members are the recipients of that as well because then they can understand what people born with Down Syndrome are wanting to express. And that family communication is improved, the family relationships are improved. And then similarly, we see that translate to out in the community, whether that be that child going to school or… in some cases, the older people born with Down Syndrome are having jobs. And so it’s significantly impactful for them to have better communication. And, uh, their whole circle just improves. You know, if any one of us are having a conversation, if we can understand each other better, it’s a better quality of life for everyone.

Andrew [00:11:58] It is interesting to think about what Janet has described. In it, there is the want to be understood and putting in the work and effort to be able to tell people who you are. In this case, committing to a program and practice to help better reach the people around you. And then on the other side, there’s the want to understand, leaving space and taking time to learn how someone is communicating with you. 

[00:12:21] When it comes to our society, we haven’t always gotten this right. Alberta’s history with mental health and developmental delays is big and complex. That history includes, at some points, the mistreatment of people with developmental delays. For a time it seemed that our society didn’t want to leave space and take time to better understand people with Down Syndrome. It meant families were on their own, navigating difficult decisions with very few community supports. Betty, George, and Wade have had their own family journey, and Wade has been encouraging his mom to write a book.

Betty [00:12:54] I mean, Wade talked about me writing a book probably when he was 40-years-old. And, um, I’ve had a rather [laughs] busy life, and so it just wasn’t possible for me to concentrate on it and get it done. So I started thinking about it a couple years before his 50th birthday and thought, “Okay, I’m gonna work on this for his 50th birthday.” What was really wonderful is that I reached out to people who had made a difference in Wade’s life and made a difference in George’s and my life as well because we… we needed support as well. And so, uh, I reached out to them and said, “Hey, this is what I’m doing.” And so I wrote some open-ended questions and said, “You might wanna think about these things. Think about experiences you had with him. Did he… teach you things? What did you learn from Wade and the experience of knowing him? What did you do with him to learn?”

[00:13:51] And so it was amazing to see these people respond to those questions. And I indicated that I would be putting them in the book in some way or other. The book changed a bit, uh, in that I was running short of time and my publisher said, “Betty, it’s not going to happen [laughs] for Wade’s birthday. So what we’re going to do is we’re gonna change it and we’re going to put it into a photobook.” So I wrote to Wade rather to— than the community, and um, developed it into 12 chapters. I produced 50 books, and some of them are hardcover and they will go to organizations that support people that, um, have intellectual disabilities and put it in their library.

[00:14:39] Wade loved this book. Every Sunday when he comes over, he is— it’s on the coffee table and he goes to this book and there’s a myriad of questions that he asks. [enthusiastic] “Did I really like pork and beans all the time? Is that all I ate?” So it’s-it’s been a wonderful gift to him. And it was therapeutic for me to write the book— Well, it was emotional. [fighting back tears] So there was, uh… there was a lot of joy, there was a lot of laughter. There was forgiveness, myself and to others. It was, um… it was a great way, uh, to forgive myself for things, to move forward and say, “Oh my God, I can do so much with this book by sharing it with other people.”

[00:15:32] So I am planning on writing a book, but it’ll be a book to the community… to maybe support families when they have a child born to them because there was no support when Wade was born. We were told that we should, um, give him up right now and, um, have him delivered to Ponoka, uh, to be taken care of there in-in the hospital there. But we were adamant— well, George was adamant that we brought this child into the world, we’ll take him home. And we did. And so, yeah! The second book will have more of the complete stories that people talked about because it—I think that they will— those stories will help people… who are surrounded or know somebody and open their minds and, uh, certainly their hearts to people that are challenged.

Andrew [00:16:33] You can hear in Betty’s voice that this journey has had its ups and downs. It’s why she and George wanted to create the Wade Screpnek Speech Therapy Fund.

Betty [00:16:42] Oh, it wasn’t easy. [laughs] Um, believe you me, it wasn’t easy. It— I think it’s-it’s very difficult on your relationship, uh, with your partner. It’s, uh, difficult with family. I have a hard time asking for support and, um, that’s… that’s certainly one of my weaknesses. So this fund to me is a builder of my own strength because the more I can, uh, increase the fund, the more I can help… children and families when I didn’t have it. And so I think funds like that are really, really important. The government only has so much money. Um, speech therapy isn’t one of the big things. [laughs] 

[00:17:3] So I look at, you know, maybe our community of children and adults who have, uh, challenges very much like our senior group. We’ve got geographic here at the end, and we’ve got another geographic here that are babies and growing up and they will end up here as well. So how are we going to make that path easier for them, right? So when they get to be seniors, they’re still going to be involved and they can share and sing and, uh… and enjoy life. 

[00:18:06] Helplessness is certainly a feeling that… often consumes me. And that kind of feeling, you either turn into a victim or you turn into a stronger person and do something about it. And so, yes! I think that the fund will help families who maybe feel helpless to say, “There is a fund out there for speech therapy? Really? I can access it?” “Yes, yes.” That’s a good thing.

Andrew [00:18:41] Edmonton Down Syndrome Society has a lovely history. The organization started informally with four families who met regularly to support each other. That support meant playdates, sharing learnings, discovering resources, and celebrating their children’s growth and achievements. Here’s a quote from the EDSS website. 

“It was so wonderful to rejoice when each little one learned to roll or sit or say the first word in a safe and supportive environment without comparison to the quote unquote “normal milestones.” As more and more families became involved, the group grew and evolved. In 1995, they incorporated as a charitable organization under the name Edmonton Down Syndrome Society.”

Janet describes how they continue to support families.

Janet [00:19:24] Well, one of the things is create that safe space, that comfortable space, and membership. So we welcome all people with a family member with Down Syndrome to join us and help find those ways that we can connect and bring resources to those families and each other. I think one of the best things in terms of a resource, um, is that. A family who’s had a lived experience connecting with another family and sharing that lived experience. What worked for them? What did they do? Who did they talk to as they, um, experienced their child growing and developing in their… their journey? 

[00:20:00] And so from medical professionals to educators to other special supports, when those families can get together an-and share, um, and help each other, that’s been the most valuable learning that, uh, I’ve seen taking place. An-and hearing about, of course. There’s been many, many years of that type of interaction. And what we can do to help support that community is just that. Make space, make programs, um, and events. Things that bring people together. And sometimes, like I said, it’s a program and it might be one-on-one or in a small group, or it might be a big special event and bringing lots of people together. We do all of the— all of those types of options.

Andrew [00:20:39] And they are not the only organization serving people with Down Syndrome. There’s also the Robin Hood Association, who has been a huge support for Wade, and Special Olympics Edmonton, Reece’s Rainbow, and many more. Having support for organizations like these is important. While people with Down Syndrome put in the work to be understood, these organizations show that there are others who want to understand them. 

Janet shares what a fund like the Wade Screpnek Speech Therapy Fund means to Edmonton Down Syndrome Society.

Janet [00:21:09] It means a great deal. Um, I believe strongly in creating sustainability for an organization. So an endowment fund, whether it is set up with a very specific purpose or a general purpose for the organization, will help us. It helps create that pipeline of dedicated donors who have thought carefully about what their gift will do with our charity and give us that steady pipeline of funds for the future. Um, any charity, you know, has issues that they need to deal with in the present day. And you always have operating needs that you have to deal with from year-to-year. And that’s important to build strategies on funding yourself for every year as you’re dealing with that. 

[00:21:52] But to know and have some funds that are set aside for the future will certainly help every charity and ours included. That… that there are funds that you can look at and say, “We’ll need that and we’ll use that for that purpose, not just now, but well into the future.” And that’s so important. It’s so rewarding to, um, have those start and see them grow and encourage more people to do the same thing.

[00:22:16] And, you know, I’m finding more and more people, really, um, are attracted to that. They are interested in learning more and they like the idea that a gift that they make now will be there forever and, really, will outlive themselves and what a gift that they could do and let it grow. And I think for me, it’s also important as I hope we have some listeners that are thinking about doing what, uh, Betty and George and their family have done that I encourage people to talk to the Edmonton Community Foundation or talk to myself about what, um, starting a small endowment fund might look like. 

Andrew [00:22:55] For Betty, having the fund last far into the future comes again from her family’s experience.

Betty [00:23:00] I think as he’s aging, it is getting more and more difficult for speech therapy. It continues throughout their lifetime. And because we see, um, people with Down Syndrome living longer, healthier, integrated lives— lifespans, it’s very, very important. So we hope this can continue into perpetuity, but it’s where we want to place our money, for sure. I want people to know, and I know they know, to go— move into action. I want people to think if they see somebody who needs speech therapy, a-a young child that’s born with Down Syndrome and they think that some way they can support them, then this is a way to do it. And even if you don’t know somebody, then know that there are people out there that really need your support. It doesn’t matter whether it’s this fund, all funds that are set up are really, really important. 

[The Well Endowed Podcast jingle plays in background]

So pick one, pick two, and give while you can.

Andrew [00:24:07] Thanks to Betty Screpnek for joining us to share the story of her family’s fund and allowing us to celebrate Wade with you. Wade will be turning 51 in just a few weeks. And thanks to Janet Tryhuba, the Executive Director at Edmonton Down Syndrome Society, for sharing more about the work they do to support families. Listeners, if you’d like to learn more about the Wade Screpnek Speech Therapy Fund and Edmonton Down Syndrome Society, be sure to check out our show notes for the links. 

[00:24:33] As always, we have lots of ways to connect. You can check out our upcoming grants and student awards, visit us on Facebook, and read our blog for even more great community stories. Thanks for sharing your time with us. I’ve been your host, Andrew Paul. 

Until next time!

The Well Endowed Podcast is produced by Edmonton Community Foundation—

Lisa Pruden [00:24:53] And is an affiliate member of the Alberta Podcast Network.

Andrew [00:24:57] This episode was edited by Lisa Pruden.

Lisa [00:24:59] You can visit our website at TheWellEndowedPodcast.com.

Andrew [00:25:02] Subscribe to us on iTunes—

Lisa [00:25:03] And follow us on Twitter at @theECF.

Andrew [00:25:06] Our theme music is by Octavo Productions.

Lisa [00:25:09] And as always, don’t forget to visit Edmonton Community Foundation at ecfoundation.org.

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