The Arc Experience Podcast
Is Your Sibling Keeping Secrets? What You Should Know About Siblings of People with Disabilities
"Mommy, when you die am I taking care of Phillip?" This question from a 7-year-old was the seed that planted WisconSibs, an organization that's been serving siblings of children and adults with disabilities for the past two decades. In this podcast episode we speak candidly with WisconSibs founder Harriet Redman about the secrets siblings sometimes keep, how a soccer game started it all and how a little complaining is a good thing. Harriet closes our conversation with warning that is essential for any Mom or Dad, regardless of the age of your child, to hear.
"Mommy, when you die am I taking care of Phillip?" This question from a 7-year-old was the seed that planted WisconSibs, an organization that's been serving siblings of children and adults with disabilities for the past two decades. In this podcast episode we speak candidly with WisconSibs founder Harriet Redman about the secrets siblings sometimes keep, how a soccer game started it all and how a little complaining is a good thing. Harriet closes our conversation with warning that is essential for any Mom or Dad, regardless of the age of your child, to hear.
Welcome to the arc experience, featuring the stories of self advocates with disabilities and their families from around Wisconsin. Be inspired. Take action. And now for today's episode. Hello.
Speaker 2:Hello and welcome to the arc experience podcast. I am your host, Lisa Pew from the arc, Wisconsin, and you're in for a treat today. I am joined by Harriet Redmond. She's joining us from the Fox Valley area. She is the executive director and founder of an organization called Wisconsin. We're going to hear from her about that. It's a nonprofit organization dedicated to children and adults who have siblings with disabilities formerly. She was a teacher, family program manager and a marketing director for a fortune 500 company. Um, she has a son with developmental disabilities whose sister is her mother's inspiration and her most honest critics. So welcome Harriet.
Speaker 3:Well, thank you, Lisa. Thank you for inviting me to speak with your audience.
Speaker 2:Well, first of all, we need to learn a little bit about Wisconsin. What is Wisconsin?
Speaker 3:Well, Wisconsin, is this kind of what it sounds like it's Wisconsin sibs with Wisconsin siblings and, um, the, uh, the name might be new to some folks cause it's, it's still a little new to us. We, uh, have been around for about 23 years, but formerly we were known as the Fox Valley siblings support network. Um, but then a few years ago we looked at ourselves and said, Hey, we are representing the state of Wisconsin. We should be, um, recognizing that in our name and also in more of our programming. So we, um, created a name, Wisconsin, um, and it all got started when my son, uh, Philip was born. And, um, about five months after his birth, um, he was diagnosed with a rare chromosomal malady that, um, still doesn't have a name. So we call it Phillips Phillips syndrome, um, because that, uh, best describes Phillip. He is who he is. Um, and he had an older sister still does. Um, she's 31 now and he's 28. And, uh, when he got the diagnosis and I was thinking about how this impacts my family, our family, um, I was pretty certain, it would have an impact on his sister and definitely I was not prepared to, to parent both a child with a disability and their sibling. So I started looking for information and, um, much to my chagrin back in 1992, um, there wasn't anything available. So I had to dig some more and kept digging until I found a few nuggets of information and, um, then got busy and, um, I didn't set out to start a nonprofit organization. I was busy doing other fantastic, wonderful things, but, um, realize that yes, indeed siblings have an important role in, um, the lives of people with disabilities and they need support because their relationship is lifelong. So, um, that
Speaker 2:Harriet as a, as a fellow parent, myself, I'm guessing when you were raising that baby Phillip and his sister, you were probably, you know, surrounded by other parents who had similar questions about how do I do both? How do I raise both the child with a disability and a sibling? Did you encounter that too?
Speaker 3:I did. Um, although, um, it probably won't surprise you that most of us when we got together with other, um, parents, 90% of our conversation was about our child with the disability that was first and foremost on our minds, um, of concern. And, um, you know, I, I have to admit that I, I kinda thought, well, you know, she's fine, she's healthy. She'll make it. I need to focus nearly all of my attention on him cause he has so many deficits and will need so much support. Um, and that is part of the challenge that parents face is that when they have a child with a disability, yes, they indeed take resources time. Um, but they also take a lot of emotion and, and the other kinds of, um, effort and energy that goes into parenting and that sometimes leaves the other siblings, other children short on the attention and, um, um, the kinds of things that they need to. Um,
Speaker 2:So you had an aha moment then that made you recognize that more clearly, right?
Speaker 3:Yes, indeed. Uh, um, cause actually, because really nobody was talking about this and I was one who would dive into research to, to find information. There was just really no information. So I thought, Oh, I should dismiss this too, because apparently it's not a thing nobody's really concerned about this. Um, but, um, I was still, I still had that itch. That there's something that needs attention here. And the moment that I called my galvanizing moment was when Phillip, who was four at the time and his sister who was seven and I were all in the front yard playing soccer or at least our version of soccer. Um, he was in his little Walker, um, and she, uh, Christiana, um, took the role of, um, support for him. Um, she decided that it would be easiest and best if she were his, um, kicker support. So she stood behind him and, um, when I would roll the ball to him, she would, um, reach down and grab his ankle and help him kick the ball back to me. So that was a, uh, a fun little game that we were engaged in. And then as I roll the ball, um, one particular time instead of helping his, uh, um, her brother, she just, she stood straight up. She looked me in the eye and she said, mommy, when you and daddy die, am I taking care of Phillip? And she was seven years old. And I had been thinking about that question, um, from what I had read and thought about in terms of how this all affects families. And I was prepared with an answer when she was maybe 17 or 27 or older, but she was seven. And she was asking me that kind of question. So once she thought about the demise of her parents, which was amazing to me, that children, that age think about that. And then she already sense that her brother was going to need help probably his whole life and that she had a role in that. And she, she was checking that out. Um, so that told me that yes, indeed young children have a lot in their minds and a lot in their hearts about their siblings, not just at the moment, but they have, they've already seen the whole life before their eyes kind of thing. And they have questions. Um, I have to say I was extremely grateful that she felt she could ask me that question. Right.
Speaker 2:Well, and I'm sure so many other siblings have that question maybe are afraid to ask, right.
Speaker 3:That's very true. Um, that it comes up a lot in some of our programs. Um, and what I get concerned about parents it's when they say, well, my child never talks about it. They never complain. And, um, a little complaining and in a few questions is a really healthy thing that I hope every parent gets those questions. And if they hear a little complaining, I think that's, that's great. That means you're open to share open to express, whatever it is, um, whether it's frustration or, or whether it's joy and love. Um, they're expressing it to their parents and we really believe that's, that's the key. So a game of soccer and the seed for Wisconsin was planted. We're going to talk more with Harriet about siblings and some misconceptions about siblings. When we come back after a word from our sponsor,
Speaker 4:This podcast episode has been brought to you by old national bank. Old national bank has been recognized by the national organization on disability as a leading disability employer, and one of the best places to work for disability, inclusion, old national fostering, a welcoming workplace where people of all abilities, backgrounds, and skills can work together to accomplish great things.
Speaker 3:Welcome back to the arc experience podcast with our conversation with Harriet Redmond, from Wisconsin. Thanks for telling the story about kind of the history and the background on Wisconsin's and your own kind of personal journey that is so familiar. I'm sure to a lot of families across the country really, or even the world, but I guess I want to just talk a little bit about what are some of those biggest misconceptions. You talked a little bit about that before, about parents not thinking that their siblings are thinking about this. Are there other things that we should really know that are in siblings minds? Sure. Um, well, one thing, and it's not only parents, but a lot of people, I anticipate that the whole experience of having a sibling, maybe with autism or down syndrome or cerebral palsy or any other, um, disability, they sometimes assume that it's a negative experience and that it, that they even assume that if you get together siblings, they're all going to complain and, and, and bemoan the fact that they have a sibling with disabilities and truly nothing could be further from the truth. Um, it's, it's a mixed bag. There's positives and there's negatives. We kind of refer to it as there's challenges and there's joys of having a sibling with a disability. Um, just like any sibling, the relationship is going to change through time. It's to there's sometimes going to be really close. Sometimes they're not, sometimes they're physically going to be distant and their hearts are going to be closed and vice versa. That's the, that's the regular rollercoaster of, of sibling relationships. Um, so assuming that it's all negative is, is, um, gets in the way. Uh, and then the other is assuming that a child, um, a sibling child doesn't complain and doesn't say anything about it is a good thing. Um, actually, um, when siblings feel they can trust and open up to the parents or someone that's really a healthy, resilient building, um, strategy. Um, and, and sometimes we see this when we do some of our programs where siblings want to share something with their parents, but they're not yet ready. And so they might practice on another sibling or they might practice on another adult to share what's, um, what's going on or, or sorted out, um, identify feelings and that type of thing. Um, so parents, I always say, be mindful that your, your child might have something to tell you. And if, um, they think that it'll stress you out or you'll get mad or you'll, um, uh, argue with them, they might not tell you.
Speaker 2:So, you know, we talked a little bit about family misconceptions. Are, is there a flip side to that? Do sometimes siblings have misconceptions that they have to work through, that everybody could be better off being aware of?
Speaker 3:Well, the siblings typically don't know what it's like to not have a sibling with a disability. Um, so until they get older and, um, maybe have matured and been more self-reflective or meet other people, they sometimes think everybody operates the same as their family operates. Um, so they don't always seek out, um, um, strategies. It's, it's interesting. We recently had a team meeting and we did it via zoom and it was early on in the pandemic. And one of the teens said, you know, my friends at school are going crazy over this, um, this lockdown, um, you know, I think it's as siblings, we just go with it. We've learned to be flexible. We've learned to be resilient, but now I see the, not everybody has learned that, and that is so true. Typically siblings are more mature. Um, they they've encountered a lot of, um, life defining experiences. Um, and it's, it's, uh, resulted in them being flexible and adaptable and resilient. Not always is that welcomed, but it's true. And then when they see other other kids behave and they kind of start to get, Oh yeah, they've never had to be flexible. They've never had life change, you know, every day, or they've never had to adapt to make, um, make sure that, um, their, their siblings life, um, it goes on with quality and self-determination all those kinds of things. And that's kind of an advantage for us teach us teen sibs. It was, it was interesting to listen to them, share that,
Speaker 2:You know, I often think in my experience that siblings are some of the coolest people on the planet because of the, having those life experiences early, I think they should be putting that stuff on resumes. Like it really makes for a better human being, an employee and all of those things to have some resilience and adaptability, I think,
Speaker 3:Yes, I would totally agree. There are my favorite people as well. Um, I love getting together with siblings of any age. Um, those teenagers make me laugh and their wisdom is beyond their years. Um, and they're, they, they, they are crazy with one another. They kind of treat each other as, as siblings too. Um, I might also add that, um, sometimes siblings and parents get the idea that their relationship is somehow, um, more special and more, um, um, I'm not even quite sure, but they may be sacred, um, because one has a disability and that they should always get along and, and no arguments. And that's not true either, um, siblings with one having a disability or not. They're going to argue that's, that's typical. And sometimes when we're talking with siblings, um, they'll tell us something about how it, you know, their simply makes them mad when they take something or whatever. And we really have to kind of unpeel that a little bit and say, well, you know, is that because of their disability or is that just because they're your sibling and you live with each other and you get on each other's nerves and help them understand that the difference, um, that that's not necessarily the disability that gets on their nerves. It's, you know, that's just kinda what happens in families,
Speaker 2:Right. We don't always get along with our siblings. I certainly remember that with my brother. So, you know, we can talk all afternoon, Harriet, and I know you have built so many great resources, trainings, materials. Could you give us a highlight on what, what sorts of resources you provide at Wisconsin and where we can find more information?
Speaker 3:Sure. Um, well, let me just say that we offer programs from age three all the way through adulthood. So there's quite a few, uh, programs and our flagship, um, program is the one we started out with. And it's the one that we did not create and that's called sip shop. And it's basically a workshop for siblings. We offer them, um, here in the Fox Valley, we offer them when we do conferences like the autism conference or the circles of life conference. And we also help other groups, um, that are doing some shops or may be interested in doing some shops, um, get started and support them as well. But basically it's an opportunity for, um, kids. Uh, we do ages six to 12 to come together. And first and foremost, learn that they're not the only ones that have a brother or sister with a disability. They're not the only ones that sometimes have to explain things and do things and adapt to things that, um, they're the friends at school don't have to. Um, and then we've added a lot of programs in between. So we offer a summer program, um, indoor County called sip camp. Um, that's for ages nine through 16 and that's overnight camp. Um, kids love those camps. They get to do all kinds of things, kayaking and ropes climbing and, um, uh, biking and hiking and swimming and all that kind of adventurous stuff. And all of them have siblings with disabilities. We also do a date camp called sip days. Um, that's not overnight, but the kids and last year we had to do it virtually, but typically we'll have, um, 50 kids ages, six to 12 who come together, um, and spend five days, um, having fun together, but also weaving those conversations with teen siblings, um, that maybe they want to practice, um, uh, sharing. Um, but they, they learn so much through that. Um, and then adults, uh, we, we have a couple of things when we try to offer some social activities that they can do with their brothers and sisters. Uh, cause that's, um, uh, something they've told us is really hard to do is find up social activities that, uh, feel welcoming. And so we try to offer that and then future planning, uh, from a sibling's perspective, um, which you and I have talked about that many, many times and how important that is. Um, so we, we have that kind of program. And then, um, we were going to launch this and then COVID happened, but we have a new program for ages three to five, and it's called sibs SAC. And, um, your listeners can't see it. So I guess I won't show it, but it's for, um, uh, parents and their children ages three to five who have a sibling with a disability. Um, we, we get a lot of calls from families that maybe just got a diagnosis or their child is too young for some shop, but they, they know they need some, um, information or ideas. And so we have the sub sec now, and you'll be hearing more about that.
Speaker 2:That's exciting. So with that, do you think we'll hear more over the summer and actually
Speaker 3:Go to a website? They can already see a sneak peak. Um, and if anyone actually, um, uh, wants to get one, um, I can, I can send them a us sub SAC. Um, they just have to email me@infoinfoatwisconsinribs.org and put the word SIB SAC SIB, S a C K, um, in the, in the subject line.
Speaker 2:And then all your other resources that you mentioned are on your website. Can you give us that address again?
Speaker 3:That was concepts. So w I S C O N S I B s.org.
Speaker 2:Okay. All the great information about the trainings that Harriet mentioned, other information about siblings. Um, I know you have great information on future planning and like you said, across the age span, so lots of rich, rich resources. I think Wisconsin is the best sibling organization in the country. And I can say that I am just going to go on the record with that Harriet. So, um, as we close out here, Harriet, I want to know from you, what's, what's a final word you'd like to leave with our listeners about siblings?
Speaker 3:Well, I think we kind of started that way as siblings are the, uh, most, um, wonderful people in the world. Um, they, they, they learn resiliency and still anyone who, um, has an experience, which is lifelong needs some support from time to time. And they experienced many, many of the same experiences and feelings as parents. So, um, having an organization or having a person, um, or having a group be able to be there for them when they need a little support is, is really important. And I think the arc, they have some fantastic, um, support for siblings as well. That's great finding support, um, where it's convenient, where it's, um, helpful siblings. That's what, um, you will benefit from throughout your whole life.
Speaker 2:Great, great advice, Harriet. I certainly learned that, um, if you have a sibling in your life, don't assume that they don't want to talk, that they don't have needs, seek out resources, have those conversations, and you can look to Wisconsin for more. Thank you so much, period for joining us today. Great pleasure. Thank you to our listeners too, for listening to the arc experience podcast today, we always appreciate our subscribers, but also please rate us on Apple podcasts, click those five stars and leave us a comment or review. Uh, we appreciate you until next time
Speaker 1:Today's episode of the Ark experience was brought to you by the arc Wisconsin, the state's oldest advocacy organization for people with intellectual developmental disabilities and their families it's funded in part by the Wisconsin board for people with developmental disabilities. Our theme music called species is the property of[inaudible] and cannot be copied or distributed without permission. It was produced by Eleanor Cheetham, a composer and artist with autism.