Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and welcome to the sibling leadership network's very first episode in celebration of our upcoming conference on June 18, and 19th. We are so excited to begin sharing with you via podcast now are all virtual conference will also feature post conference workshops on June 22 23rd and 24th. Check out all the details on sibling leadership.org. We are so happy and grateful to have a fitting guest for our inaugural episode. Some call this pioneer advocate the father of sibling support. Don Meyer is joining us today to talk about his life's work his favorite foods and the current state of siblings and our upcoming national conference. Thank you for being with us today, Don. 

Oh, it's my pleasure, Chris. Thanks for having me on. 

Absolutely. For any listeners who are not already familiar with Don Meyer. He is the founder and former director of the sibling support project and the creator of the snapshot model. During his 28 years with the sibling support project. Don has conducted workshops and trainings in all 50 states throughout Canada and in 10 additional countries leading to the creation of 500 sib shops worldwide. He is the author and or editor of six books on sibling issues including views from our shoes, the sibling Survival Guide, a personal favorite, the SIP shop, sorry, and sip shops, workshops for siblings of children with special needs. He is also the creator of online sibling groups subnet, sib 20 and 17. that provide peer support to 1000s of brothers and sisters every day. In 2019. Don was the recipient of the sibling Leadership Network Lifetime Achievement Award. Although he is retired, Don continues to support the work of the sibling support project and present keynotes workshops and seminars in on sibling issues nationally and internationally. And apparently know podcasts as well. Did I miss anything? 

No, no, that's, that's fine. That's great. Thank you. 

Yeah, great. So I want to start off by touching on your history and foundational work in the sibling movement. First off, what inspired you to begin this journey changing the lives of so many people.

A million years ago, in the late 70s, I had been a special education teacher in Minnesota. And I came to the University of Washington to get a master's degree in early childhood special education. And almost as soon as I arrived, I had an opportunity to help start the country's first program specifically for dads of kids with disabilities. My advisor was advised me to do something about these dads, because a lot of the so called parent groups were functionally mom groups. And she, she wanted the dads to be involved somehow. And I was the only male early childhood graduate student that particular quarter. And so I was advised to do something with these dads. And so I thought it was novel and needed. And I from my friends and colleagues, I didn't get much support. They go fathers fathers, well, you know, they're, you know, they're not going to show up. And if they do, they're not going to say anything, I thought well, okay, well, we'll give it a try. And we got these dads together. And long story short, but what I found is that dads had a lot to say to one another if they're given a chance. And that's the key if they're given a chance. And, and I've worked a lot with dads over the years, and I learned how they get together and they get together and they're looking at the walls and the clocks in there. And as if to say, you know, why the hell do I let my wife talked me into coming to this thing? And then they sit down with other dads and they start having these aha experiences. Oh, that happened to you? Well, let me tell you what happened to our family. And so these things snowball and then pretty soon you can't get them to shut up. You know, they have a lot to say to one another. And so we ran the father's program for a couple of years. And then we saw that there are other traditionally underserved family members of kids with disabilities. And so that's when we started this program called C fam s EFA. m, supporting extended family members. And so that's where sim shops got its start in 1982. And we also had a program for grandparents so on any and I was the director of that that program So on any given Saturday at the University of Washington, I was either doing a sim shop, a father's program or grandparents workshop, and we developed some curricular material on that. And that's where sim shops got its start. And, you know, my work ended up focusing solely on siblings. And I just knew that there are literally millions of siblings in the United States alone. And where do I get that number? Well, you know, if you think that there are, let's say, 4.5 million people with disabilities in the United States, well, most of those people have at least one brother, sister. So there's 4.5 million people with disabilities, or at least 4.5 million Sims out there. That's a lot of people. And as we know, sibling issues or lifespan issues, you know, preschoolers or Sims have some unique issues, senior citizens, or Sims have some unique issues. And those concerns change and evolve throughout the families, and individuals lifespan. And so there's lots of good work to be done for this incredibly deserving population. So I was lucky enough to get some grant funding to start the sibling support project. I was now at Children's Hospital, here in Seattle, in in 1990. And, and so I got some grant money that, you know, allowed me to start the sibling support project and go out and do training on the Sims on the SIP chop curriculum. But because I realized that, you know, these are lifespan issues. I also develop some initiatives for older sibs and team Sims and you know, informational pieces papers on about sibling issues for parents and service providers and the books that we develop, so on and so forth.

Very nice. That's awesome. Thank you. So there are still so many advocates and policymakers striving really hard to continue that work and having the sibling voice be heard, and make some positive change not only for themselves, but for their siblings with disabilities. What would be your message to everybody that's out there in the trenches right now?

Well, for the, for the Sims, I encourage them to connect with one another every week on sip net. And most of your listeners probably know that sip net is our closed Facebook group for adult Sims. There are about 606,000 members from all over the English speaking world. Sim net, parenthetically, has been around almost as long as the internet it's almost 25 years old, started off as listserv, then it was a Yahoo group. And again, it's now on Facebook. But almost every day or every other day, we seem to have an epiphany from a new member. And that member, if I had to stereotype her, would be a sister who is in her 40s. She's got a couple of kids of her own. She's got a career. She has a brother who has autism, and she has parents who have not done an especially good job of planning for the future. And, and she could use some support, she could use some information, she certainly could use some validation. And so she finds her way onto sip net somehow, and she reads what other people have posted. And she finally posted note of her own something that effective Oh my god, I'm so glad I found this group. I had no idea other people had some of the same ambivalent feelings I have about having a brother with autism. And you know, I am 45 years old and I've never connected with another Sim. When I read what other people have written, it's like I'm reading pages out of my own journal, my own diary of 45 years is a long time to wait for validation. And and so sibs who have connected with one another, find such solace and such validation and such helpful information. When they connect with others who are walking down a similar path. I would encourage any siblings regardless of their age, to get connect with other sips. So that's not only true on signet, and and you know, sibs can connect with works on sibling issues. But there's a wonderful opportunity to connect with others at the upcoming conference, the sibling Leadership Network conference. It's just a marvelous chance to get together with you know, your peeps right? As far as the advocates and policymakers, you know, what I would encourage them to do is listen, listen and acknowledge that sibs are there and to make brothers and sisters a part of their functional definition of family. Because all too often, policies, policy makers, functional definition of family is the individual who's got the problem. And that individuals parents, if we're really honest about it, is the individual who's got the issue in that individual's mother. So I take great delight and holding my friends, my colleagues, feet to the fire and say, hey, look, if you want to use the F word, the family word, then you need to be thinking about the family member who's going to have the longest lasting relationship with the person who has a disability and make some systemic change with the way that we do business to invite brothers and sisters out of the literal and figurative waiting rooms of the service delivery system. So I'd encourage policy makers to listen to sibs and acknowledge them, and how might they listen to them? Well, sibling panels are a really potent way to learn about, like, as a sip. I just conducted a sibling panel yesterday for a pediatrics conference. And it was, it was amazing. I've probably done over 100 sibling panels over the years. And I'm always learning something new about the sibling experience. And I always do my best learning when I listened to the true experts on that topic. And that being said,

Yeah, absolutely. I can definitely relate to the being that sibling on subnet, and it's been a great resource. Awesome. While you are still very active in the sibling movement, in 2019, you stepped down from your role at the sibling support project and retired? Can you speak to what inspired that change in your life and what it meant for your personal well being?

Well, I had the best job in the world, I was such a lucky guy to do what I did. And as you've already attested, to I'm, I'm still, I'm still involved in the sim stuff, the sim stuffs in my DNA by now. And I doubt if I will, you know, completely ever, you know, leave the sibling community, it's, it's just such a, you know, it's just part of who I am. And I just think sips are just so incredibly important. But, you know, nobody works forever. And there's always a time, there's always a need to have new blood and new ideas. And, you know, it's inevitable that the torch needs to be passed, and I just wanted to be very planful about it. The last thing I mean, I, you know, I wanted to get while the getting's good and be very thoughtful about as I pass the project on to other people. And I'm so so lucky that we have a terrific new director, the sibling support project, Emily Hall has done a fabulous job with it. And she's done some amazing stuff. With adapting sip shops, in sip chop trainings to online, you know, sip chops, we're all live events, and you can't, and sip chop trainings are all live events. And there's no substitute for a live event, right. But realities were such that we needed to adapt. And she did an amazing job of not only adapting the training, but also helping local sim shops, providers provide their sim shops online with young kids. She's also done amazing outreach to the bipoc community, and, and having the forums that she's she's helped, you know, get off the ground. And those have been remarkable events. So I wanted to do that. And, and, and so it was like a two and a half year process of, you know, succession planning, and looking for the new director, and I'm really pleased with how it's gone. I'm lucky to say.

So with how everything has been changing lately, because of the pandemic, there is an incredible amount of additional stress that's been put on siblings. self care has become a trending and vital topic in our communities. Can you speak to any challenges, if any, that the pandemic is created for you, and how do you take care of yourself?

Well, you know, to be sure, I'm really lucky in that regard. You know, I mean, you know, technically I'm retired and so I didn't have to worry about you know, work situations. We should Bubble with her eldest daughter and her family. And they weren't able to go into work, they weren't able to get childcare. So my wife and I've been providing a lot of childcare for our two grandkids, one big three and the other being 10 months. And so that's kind of kept us busy doing that. And other little self care things, you know, going on lots of walks, and, you know, baking bread. It's sort of a cliche for people in corrente. But we've been doing that and house projects, but But yeah, that kind of self care. Yeah, we've been lucky in that regard. Very cool.

Yeah. family's very important, especially during stressful time. So yes.

Um,

another thing that's good is eating well, and you'll be cooking with us during the conference on June 19, as part of our special event, can you tell us a little bit about that event, what you're cooking and why you chose that dish?

Yeah, eating wells, the best revenge, obviously, might not, I might not always be able to live large. But if you there's no excuse for not eating. Well, that's been my motto over the years. The dish we're going to be making is pasta puttanesca. And I love pasta puttanesca for a lot of reasons. It's this spicy, summery kind of pasta that you can enjoy in the middle of the winter. And, you know, you can stock your pantry with most of the stuff that you have in pasta puttanesca and it comes together rather quickly. And pasta puttanesca besides having this lively taste of olives, and capers and tomatoes and garlic. It has a slightly racy backstory. And that x story is puttanesca is Italian for streetwalker. And apparently the legend goes is pasta puttanesca was a dish that ladies of the evenings could quickly pulled together between a gigs, shall we say? And I think it also the name also speaks to a slightly spicy a case, shall we say? So it's it's it's it's a very user friendly dish and one that we make around this household a lot. And one that I think people really like,

yeah, I'm excited for that. So, and along with that cooking, I heard a story that you cooked for 50 people once, for someone like me who can barely make himself a sandwich sometimes that's quite the achievement. Can you tell us about that meal?

Well, that was I am an IBM, Italian by marriage. Like my wife is a nice Italian girl from Chicago. And her family over the bat for ever since she was a little kid had this Feast of the Seven Fishes on Christmas Eve. Bad that's becoming more well known. But back in the day, that was just something very singular into the Italian community. And so my wife and I have carried on this tradition in our own family. So for over 3030 plus years, we have done this every Christmas Eve and you know, you'd Seven Fishes and presumably you're fasting in preparation for for Christmas, you're not eating meat, big deal. But it's mostly an opportunity to eat lots of really good seafood. And so we started off with family and just a few friends and then more it just kind of grew and grew and grew until one year we just said oh yeah, anybody wants to come You know, just cop just go and we ended up with 50 people at our house. And mind you I didn't make all the food that particular evening. But it was sort of standing room only dinner. And after that particular event we swore we were going to pare it down. And as our family has grown with kids, you know sons and daughters in law and grandkids we we now have it mostly just just for our family and and a few close friends. But it's still like, you know, maybe 20 people. Oh, yeah.

Maybe I'll come by on Christmas next year

We'd love to have you. 

So we are definitely looking forward to cooking with you and sharing that meal with you. anyone listening who still wants to reserve that virtual table you can still find All the details on sibling leadership.org. We are very excited to host this event and so many more during the conference. Don, you've been to many if not all of the SLN conferences in the past. Can you speak to what is most compelling about these conferences? And are you excited about any particular sessions or events besides dinner with Don, our upcoming conference?

Yeah. Well, what makes me always Yeah, I have been to them all. And I know, I'm not the only person who thinks this. But when I'm at the sibling leadership, network events, it's like, at a family reunion with family members that I really like. You know, I mean, you know, I mean, my, I mean, I'm just grinning the whole time. And, and, and I'm there with my SLN homeys. And people who, you know, other sibs, a lot of people that, you know, we haven't met before, but within moments, you know, there's shared experiences, and this connections and friendships are made, and people stay in touch, even though they might live on different coasts. But it's a beautiful, beautiful thing. And I think the theme of the conference, string through connection is just too perfect, you know, metaphor for what happens at SLN conference, and I encourage everybody to come and next time, God willing, it will be a live event. And and, you know, definitely plan on coming to that too, because again, there's no, no substitute for a live event, but I'm really excited about how this online event is going to go. With regards to the sessions, really, I mean, you know, I think they're all wonderful topics, and I can't wait to check them out. But, you know, the ones that really caught my eye are the ones about self care. I think that's really important for sibs, you know, we have a lot of sibs. Who, man, do they have a full plate, you know, they have, you know, they have lives, they have careers, they have, you know, a lot of things going on, you know, there's a saying in the sibling community, that a lot of people, especially folks, my age are not in the sandwich generation, they're in the club sandwich generation, because they're raising kids, they're looking after aging parents, and oh, yeah, they have, you know, a brother with down syndrome, they have a sister with with cerebral palsy, I mean, there's is a very full plate. And these are people who, you know, you know, are real. And they say this about themselves, you know, we are people who are really good at taking care of other people. But what's the next thing they say, but they're always not so good about taking care of themselves. And so we need to encourage sibs to you know, put on their own oxygen mask first, and take care of their own stuff. And I think in doing so everybody's going to benefit, they're going to benefit their own family is going to benefit. But ultimately, I think that family member with a disability is going to benefit to because they're going to have someone advocating for them, that is having her or his needs met along the way. So the self care one really speaks to me, and the silver sibs, I really like that because there are a lot of sibs, who, you know, you know, in the, let's say, the baby boom generation whose parents are still around, who are facing some, you know, some some issues that are uniquely theirs, especially those whose parents have not done an especially good job of planning for their brothers sisters. Future. So I'm very much excited about those as well.

Very nice. Yeah. I'm also excited for some international, more international reach to national panel coming up on the 24th. That's Yeah, yeah.

Yeah, one of the things I've, you know, I, as you mentioned, in introduction, I've done trainings in lots of other countries. And while there are some differences, it's amazing how universal some of many of the sibling experiences are. And it's great to connect with them, you know, so yeah, I'm looking forward to that as well.

Very nice. So finally, as a founding advocate in the sibling movement, where do you think sibs are headed next, and what is your dream for the future of sibs nationally and worldwide?

Where I think they're headed nationally and worldwide, and and it is just expanding influence and in And getting seats at the at the table and having their voices heard increasingly with policy makers. And you know, I've been banging this drum for a long time. And I'm, you know, I'm gratified to see that more national organizations advocating for people with disabilities are starting to put sibs on their radar screens are starting to acknowledge that Sims even exist. But there's a lot more work to be done. So my dream for the future is more, more, all of the above, we need to do more things for young Sims. Not only to connect Sims through sim shops and other ways, but to educate their parents to educate policymakers to inform school personnel about the Sims who may be in their classroom to attend to them and their concerns. Lots of good stuff to be done with Team sibs, we do have the team sim Facebook page, but you know, I mean, that's, I mean, that's a great start poking him to be doing more for them. We need to do more for adult sibs. And you know, I'm proud of the work that we've done with the sibling Survival Guide, and and sib net and Sim 20. But, you know, there's always more work to be done. I think we need to do more for Sims, you know, from underrepresented communities, like I was mentioning the wonderful work that Emily and others that she's not the only person involved at the bipoc roundtables. But we need more and more and more that, and I'm glad to see that we're going to have some of that in the upcoming conference. And we need to, as you mentioned, just, you know, network with our friends in other countries, Kate Strom, who runs siblings, Australia, she and I, CO. co sponsor and co host, said team, and we need to do more of that. And I think people in other countries are very willing to do that. If they're interested. We just need we need to do that. And quite honestly, we need more funding, you know, that is a chronic problem of all sibling initiatives is that, you know, it funding is a huge, huge issue, you know, and you get to a point where no money, no mission, and to the extent to which we can alert funders to brothers and sisters, very legitimate issues. It will allow us to do more things and to realize some of the dreams that we have to make services and policies that address sibs in their very legitimate concerns.

Nice, very cool. Should be an exciting future had. Well, that's all I have, as far as questions. Do you have anything else that you wanted to add?

No, no, I'm just, I'm just looking forward to the conference. And if you want to join us to to make puttanesca let us know we're going to be shaped chopping and dicing and tossing pasta all at the same time and with a, you know, with a beverage of our choice and, and you know, there'll be some chances to chat. So, you know, I'm looking forward to this is going to be a really good time.

Awesome. Thank you so much, not only for the lifetime of work that you've contributed, for which we wouldn't even be here but also just for thank, thank you for joining us today.

My pleasure. My pleasure. Thank you, I've been lucky guy to do what I do. So thanks for your interest.

Thank you so much. Take care. Please join us for the eighth national sibling Leadership Network conference on June 18 and 19th with post conference sessions on June 22 23rd, and 24. Find all the details and registration information on sibling leadership.org. That's SIBLINGLEADERSHIP dot ORG. Thank you for listening and we look forward to you joining us on many more episodes to find resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.

Transcribed by https://otter.ai