Author and podcast host, Sandra Peoples shares her perspective on filling two roles in a special needs family, being both the sibling and a mother. Her insights regarding three different stages siblings of special needs children experience and how parents should support their children in these stages is encouraging and perceptive.
July 6, 2021; Ep. 47
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Author and podcast host, Sandra Peoples shares her perspective on filling two roles in a special needs family, being both the sibling and a mother. Her insights regarding three different stages siblings of special needs children experience and how parents should support their children in these stages is encouraging and perceptive.
July 6, 2021; Ep. 47
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Sara Clime 0:22
Welcome to Take Heart where our goal is to give you hope and offer insight and encouragement, so you can flourish in your journey as a special needs mom. Each week, Amy, Carrie and Sara will explore a theme, share an inspiring story, practical tip and an encouraging blessing using our combined experience of over 30 years of parenting children with special needs.
Hi, it's Sara this week. We are several weeks into our Take Heart Summer Interview Series, and we hope you were enjoying it as much as we are. Today we have Sandra Peoples here with us. Sandra is a special needs mom and sibling. She and her family live outside of Houston, Texas, where she serves her church as the inclusion coordinator for special needs families. She also serves the Southern Baptists of Texas convention as their special needs ministry consultant. She's the author of Unexpected Blessings: The Joys and Possibilities of Life in a Special Needs Family. She's the host of the podcast, Self Care and Soul Care for the Caregiver. Hi, Sandra.
Sandra Peoples 1:44
Hi Sara,
Sara Clime 1:45
I am so excited that you're here. The first time I met Sandra, and she probably doesn't remember but I do. It was at a conference in Kansas City. It was at SOARS Wonderfully Made Conference. I went to a sibling breakout session. I was expecting to get some words of wisdom, but I didn't expect to get all that I got. It was just so wonderful. We are going to get to the sibling part, I promise. I want to start with - give our listeners just a little bit about yourself, where you're from, your family, all the things about Sandra,
Sandra Peoples 2:24
My husband and I have two boys. We live outside of Houston, Texas, in a suburb. My husband is a pastor. I stay home and do all the things online, podcasting, writing and social media, and all that kind of stuff. I work at our church as our inclusion coordinator for special needs families. I work for our state convention as their special needs ministry consultant. I kind of wear lots of different hats. It's all fun stuff, and it's all related to supporting special needs families.
Sara Clime 3:05
This is really where your heart is, the special needs inclusion seems like every aspect of your life revolves around that. Would that be fair?
Sandra Peoples 3:14
Yeah. I am a special needs sibling and a special needs mom. I have a sister with Down's Syndrome. I have been part of a special needs family my whole life. I've never not known this world. Of course, it's different being a sibling and being a mom. A lot of those things have changed. My younger son James, who is 13 now, has autism. If you're familiar with the levels of autism, he's level three, which means he's mostly nonverbal. He was diagnosed 10 years ago when we lived in Pennsylvania. It's been quite a journey over the last 10 years, and especially in the world of autism. When you get the diagnosis when they're two or three or whatever age, you have no idea what that future is gonna bring. You just don't know what that's gonna look like.There's no way. They say if you've met one person with autism, you've met one person with autism. That one person isn't representative of everybody. It's just interesting to get to know him very individually and meet his needs, but then still serve all these families through my church and in our community and get to know parents who wear this caregiving special needs hat. But, our kids have so many different needs, so many different skills and abilities and interests. As different as they are, we still as caregivers have a lot in common. There's so many ways that we can encourage and support each other.
Sara Clime 4:55
That's right. Actually the co-hosts of this, Amy and Carrie, one of things that surprised us the most is how vast our journeys are, and how vastly different the diagnoses are, but how much we had in common. We talk about how surprised we were when we first talked that someone with my son's diagnosis could have such similar issues, feelings, thoughts or fears, all the gamut of emotions that Amy and Carrie do. That is one thing that I love about that. You have a sibling that has Down Syndrome, so you've always been a part of this community? How have you seen your faith grow as a result of maybe both hats, or just the one hat of being a special needs family? How have you seen that grow and change?
Sandra Peoples 5:50
Well, that's an interesting question, because...and I say this with lots of grace to myself, my 10 years ago self, when we were getting James's diagnosis. Because I want to be honest about how I felt at that time, even though things have changed. One of the things that I really struggled with at the time of getting James's diagnosis was that I already was part of this world. I felt like I had already paid my dues in the special needs world. It just felt like I know how hard this is. I know how joyful it is, at times. I've lived my whole life aware. Being called Sibyl's sister, almost as often as I was called by my own name, because we grew up in this small town in Oklahoma. It's the town my mom grew up in, and my grandpa grew up in. We were known like you are in small towns. Of course, because Down's Syndrome has physical characteristics, people knew her when we walked in, and they could see that that was who our family was. When we got James's diagnosis, I was a pastor's wife at that time. I had gone to seminary. I have a Master's of Divinity degree. I felt like I had this solid faith foundation. What I really struggled with was almost to the level of prosperity gospel beliefs. I had lived this good life, and I had already been a special needs sibling. Therefore, I deserved some pretty easy kids, who would sit right next to me on the front pew at church every Sunday, and wear their matching outfits and behave just like I made them behave. Right? It was unsettling. It was hard in those first few months. One verse that I really clung to at that time is in James, and it's James 1:17. It says, "Every good and perfect gift is from above, coming down from the Father." I had to say, because this is coming from God, everything is under his sovereign control, which means he has a plan in this, which means, from his perspective, it's a good gift. Somehow, it will work out for my good, for my husband's good, for our older son, David's good, and even for James's good. That was what I wrestled with, especially in those early years of how can I change my perspective? I'm seeing this in some ways as, I don't know if punishments are the right word, but something I didn't deserve, another struggle that I didn't deserve to have. When I shifted that and meditated on this verse and thought, no, somehow, this is going to be good. Someday I will be able to consider this a good gift for our family. That was in those early days, what I wrestled with. Part of that was, all those years I was a sibling, and then being a mom, and all of that kind of coming together at that time.
Sara Clime 9:15
I love how you said that you had to accept, and maybe not to put words in your mouth, but it was a choice of someday, that I will see this as a positive thing. I know for myself with my son's diagnosis, that was true. There is absolutely no way that my human brain can even begin to comprehend how my son's diagnosis, and all of the pain that he will have to go through is a good thing. I think that that's what I always like to have. If there's one thing that I would love our readers to understand, our listeners to understand is that it's okay to view that, not a punishment, but maybe an obstacle. It's okay to see that as negative. It's okay to have to make the choice to say, okay, God, but I trust you enough that this is a good thing. I don't see it. I don't feel it. I know, it is good, because you are good. I think it's a really fundamental shift. I love how you said that you just had to meditate on that scripture and, and really give that some thought and to actively make that choice. So that is beautiful. Now, I think that that's going to bring so much to our listeners. Again, this life is hard. It's full of obstacles. It's full of moments where you pull your hair out, or you go to the closet and cry, whichever one you feel at the moment. What is one thing about James, your 13 year old with autism? What is one thing about James or just your life in general, as a special needs parent that gives you true joy?
Sandra Peoples 11:13
Well, our James is a pretty joyful guy. There have been hard seasons, there have been times that that's not probably how I would have described him. If you think of the beginning of the pandemic last year. He thrives on routine, and we lost that whole support system. Those were really hard months. If I just think about today. What is bringing me joy in the season that we're in today? His smile is infectious. He laughs often. He has these jokes, even though other people wouldn't understand them as being jokes, but to him, they're jokes. Like most autism families, we love Thomas the Train. He'll say something like, Thomas is red. That's a joke to him, because Thomas is blue. There's other trains that are different colors. We just laugh. We say, "No, Thomas isn't red, Thomas is blue." He's telling jokes, because he loves that interaction with us. He loves making us smile. He actually loves eye contact. He can hold pretty good eye contact. It's a joy to see what makes him happy, and to have an invitation into his world, and take joy from the things he takes joy in. Even if it's like a YouTube video that he's watching, he'll point to it. He'll raise his eyebrows real high and point to it or get my finger and make me point to it. It's an invitation into the things that make him happy, and there's no embarrassment about that. He has no way of thinking, well, other kids my age aren't interested in that, or maybe mom won't be interested. It's just, this makes me happy, and I want to share it with my mom, because I love her. I love that. Even that example for me, to just take joy in things that I take joy in and invite other people into that joy and not be afraid if I am too excited about it, or if it's a silly thing to take joy in. Say, no, this is something I like, and I'm going to enjoy it.
Sara Clime 13:33
I love that. I love when you said that it's an invitation into what makes him happy. I have found that I could say that I have this special needs ministry, but truly the heart of my ministry is my son. It's not just because I'm a mom of a child with special needs. He is the heart of it, because it is such an invitation into what makes him happy. That is so true. My son is on the spectrum, but he's just very high functioning. It's more of a secondary diagnosis from his primary one. He does not like making eye contact, so when he does make eye contact with other people, he does what those he knows. When he makes that eye contact with others, there's just something about it. When he does make his jokes are very dry, and sometimes they're not always appropriate. When he makes them and they're funny. But you're right, there's no pretension about it. There's no this is what makes me happy, so it has to make other people happy. There's something. Would you say that it just kind of brings you to a level of just absolute joy? I'm having a hard time with the words for it, but it's just so pure.It's so true. That I think is one of the joys of being a special needs mom.
Sandra Peoples 15:08
Yeah, I love the freedom of it. The freedom to just say, we are who we are, we love what we love. I'm not making any apologies for that. I think for those of us who...This is part of growing up with a special needs sibling, I am almost hyper aware of people around me, and what their expectations are, because I felt the family I grew up in people were always looking at us. So I tried to be that really low maintenance daughter, not gonna cause any problems, not gonna stand out in any way. My default personality is really not a super joyful one. I am more serious, more matter of fact. To have this ray of sunshine in our lives each day that remind us to be silly or to be funny, or to make mud puddles and jump in them at the end of the day, or get tickles if that's what he wants. It's really...it's such a gift.
Sara Clime 16:15
Yeah, yeah. If we can just kind of camp out on the sibling aspect of it because you have your book, Unexpected Blessings. One of my favorite chapters ever on siblings with special needs. There's so much good content. The link to that will be in the show notes by the way. One of the things I remember most about the conference that I set in on that sibling breakout session was the fact that you wore two hats. You are the mom, but you also started with a sibling. If you would share a little bit about that, and primarily how there's some advice that you have taken from when you were a special needs child that you have now given to your older son, David? It's helped you raise him maybe differently than what one who didn't have a special needs sibling would do. So would you share more about that?
Sandra Peoples 17:19
Yeah, I'd love to. I love talking about this unique role that I fulfill as a sibling and as a parent. There's lots of people who can speak on both and have great advice, and I'm still living it out. I mean I'm still learning. My older sister lives with our parents still. There are stages of sibling stuff that I will go through in the next 10 to 15 years as her primary care falls on me and not on our parents. I look at David and I think, what do I want his life to look like when he's my age when some of this responsibility is on him? What are the ways that my life has changed because I'm Sibyl's sister in positive ways and hard ways? How do I help him navigate the positive things and the hard things at the same time? There's a lot of systems that we kind of set up that I hope make it easier on him. One thing that I really...especially when he was younger, he's 15 now. I think that special needs siblings have three stages that they go through. When he was younger, when he was in that first stage, I like to call it when they are 1 to 10 years old, they're noticing differences between themselves and their sibling. They're great, whether that sibling is older or younger, or whatever. They're saying my brother or sister isn't like my friends or like my friends' brothers and sisters, there's something different. When I was growing up, obviously with Down's Syndrome, there were physical things that were different about my sister, her communication was different. She speaks, especially then, she spoke with a lisp and had to see a speech pathologist. We're Sibyl, Sandra and Sara, so that's hard to say when you have a lisp. She normally called called me Andra, instead of Sandra, when we were really young. I kept noticing these differences, and I kept up a dialogue with my parents about what I was noticing, which I think is really important. As parents, we can invite those questions. We can we can affirm that curiosity. It's not judgmental, when they're one year old to ten-years old. They're just trying to figure out what's different about my family and why do I have a sibling who's different? I remember asking my Mom, why did God give me a sister with Down's Syndrome? We would kind of talk through some of that stuff. As parents, especially in that stage, we need to be very mindful that we're not shaming our kids for any of the reactions that they're having. Even now, as I parent James and David, I almost sometimes want to say, David will get mad at James. I will say, "Well, don't get mad at him, you know, he can't help it." Well, every brother gets mad at their brother, right? It's unfair for me to have this expectation that David's not going to get mad, or get frustrated, or be embarrassed or all of those things. I have to be very mindful that I am not shaming him for what he feels in that moment, whether that's a question or a big emotion. I mean, especially now. We're in that next phase for special needs siblings, which I call "focusing on differences." He is aware of him and how he's different from his peers. Like most teenagers, especially in the early teen years, they just want to fit in, and having a sibling with a disability makes them stand out, especially if they go to the same school, or they go to church together, or their friends see their sibling. That's when there's more embarrassment. There's more, 'why can't he just act like everybody else acts or everybody's looking at us in this restaurant, that kind of thing. So, in this phase, I'm trying to sometimes, in a nice way, say, "Your feelings are valid, but your feelings don't always tell us the truth." We have to evaluate, yes, it's fine that you're embarrassed. Say we're at a restaurant together, and James screeches or makes a noise, and everybody looks at us, or at least it feels like everybody's looking at us. David gets embarrassed by that. Later on that evening, I can say, "I know how embarrassed you were, but you know what? Everybody looked at us. Then they looked away, and then they went back to their meals, and they probably don't even remember that. So, you don't need to carry that with you as anxiety and stress and embarrassment, 12 hours later, or 24 hours later. Because it's not as big a deal to anybody else's brain than your 13 year old, 15 year old brain, that's telling you that everything is such a big deal. Any way you stand out is huge and noticeable and different. So that's in that stage. That's super helpful. Then I think, as we transition, David's 15, so the older he gets, and then as he transitions into adulthood, that last stage. I like to say that they're realizing who they are based on the differences that their sibling has. That's when you go away to college. I went away to college. I went where nobody knew me, because I didn't want to still be Sibyl's sister in this new transition. Then I got to choose when I told people that I had a sister with Down's Syndrome in that phase. I got to say, does this matter to me? How has it made me who I am separate from having her around all the time, and being part of this family unit? Sometimes, I think that maybe even a hard season for parents. If you think of your child's away at college, and they're dating somebody new, and they're reluctant to bring that person home. Right? Because whoever they marry, like for me, when I started dating my husband, Lee, I had to think, well, we could be responsible for Sibyl's care someday. When do I tell him that? Will that make a difference in our relationship? Is he willing to sign up for that when he marries me? Of course, we didn't know at that point, we would also have a child with a disability. You can't predict that. At least I could say if you're not willing to be all in and be willing to care, Sibyl is partly my responsibility and if we get married, she will be partly your responsibility. That last phase of being over 18, and into those early adult years as a sibling, we have to figure out when we're ready to have those conversations with people and what difference that made in our lives.
Sara Clime 24:36
I love that. I have a 20 year old right now, and I think that that's so vital for him. He's away at college and having those conversations when he feels ready to have those conversations. Like you said not shaming them at any stage for however they're feeling. I love that, and I love how you said that you invite the questions from the children. I think that that's such a... My oldest son and I would have date nights. A lot of times it was just going to the grocery store because one, I didn't have enough time or money to do anything else. It was just that one on one time where I would spend time with him. I would even ask questions, "This week when he had that meltdown, like you said, at the restaurant, and that was embarrassing, wasn't it?? Because my son was very quiet. He was the perfect child, never wanted to rock the boat. I think that's kind of where you probably were, as Sibyl's sister of not wanting to add too much more to the plate, so to speak. Having those conversations really early on is so vital. I love that. Yeah, love that. If there's one piece of advice that you could go back and tell yourself at the beginning of this, and either journey, it's different. This question is different for you because you have the journey as a child is probably you don't know any different. As a special needs parent, is there anything that you would go back and tell yourself maybe to be more graceful to yourself or anything like that?
Sandra Peoples 26:08
Yeah, there's one thing that I thought of, because I grew up in this disability community in this small town. My family was friends with other special needs families. In a way, that was a benefit to me. When we first got James's diagnosis, I had people I could call on who already were part of this community. Really early on, I called on a friend of my mom's. Her kids were the same ages, as we were, and we grew up together. She had a son with autism, even though when we were really little, that's not what he was diagnosed with. Later on, that's the diagnosis he got. I remember calling her and telling her, "This isn't fair. How do I do this? What do I do? How do I live? What steps do I take?" She gave me a verse that was so helpful to me. It's something that I refer back to even with hard seasons now. It's Psalm 126:5, and it says, "Those who sow in tears, will reap with shouts of joy." I mean, she was giving me permission to sow in tears. She was also, through her decades of experience, reminding me that there is joy. I mean they can exist together. We can be encouraged by that. We can get up each day and say man, there could be some tears today, but there will also be moments of joy. There will be some days that it's mostly tears. There will be some days where it's mostly joy. That advice from her to me, that's the same advice I would give to new parents to say. There's going to be both. The title of my book, Unexpected Blessings. You're going to find those even on the hardest days. Maybe those are the days that you'll especially find it, on the hardest days, because we look for it, we're trained where we're trying to turn away from bitterness. We've seen some parents hold on to bitterness, even when they're like us, have been parenting for a long time. They're still struggling. I think that balance of it's okay to struggle, but it's also such a joyful life. I mean we get to experience and see the world through our kids' eyes, and it makes a real difference in our view, and how we relate to God, and how we relate to other people and how we're better at everything we do because of the influence that our kids have on us. That verse still speaks to me, I carry it with me in hard seasons. That's probably the verse that I would give to parents as they're at the beginning of this journey.
Sara Clime 29:18
I love that. Thank you so much. I could talk to you for hours. Tell us a little bit about how we can find you, where you are these days? I know your book, Unexpected Blessings, and it's Unexpected Blessings: The Joys and Possibilities of Life in a Special Needs Family. Guys, if you have not read this, this is definitely a must read. Again, we'll have the links to that in the show notes. You have a podcast. You have all the things, so just tell us where we can find you because I know people are gonna want to check out your resources.
Sandra Peoples 29:56
Awesome. Well, I hope they do. I hope what I do in my ministry is, I realize there's something I need, so I create it for myself, and then I share it with everybody else. You know what I mean? Oh, I need this. If I'm gonna spend the time writing it or whatever, then I'm going to share that with everybody else. So www.sandrapeoples.com is the hub for that. There's links to the book that you mentioned, the podcast, which is called Self Care and Soul Care for the Caregiver. We're taking some weeks off this summer, but there are 70ish episodes that people could go back through and listen to. That's more like practical help. We talk a lot about decision fatigue, and little things that are going to make life easier for your family. We also talk about relationships: like how can I be a good friend when I'm so busy in all of these appointments and in this caregiving life? Hopefully, that's a really helpful resource. I'm on Instagram. I think that's everybody's new favorite place to hang out. My username is @Sandrapeoples, and then I'm on Twitter, and Facebook, and all the places. Especially in the summer, when our kids are home more, and things are just different, Instagram is probably the best place to find me. You can see my garden progress. You can see our beach trips, all those fun things.
Sara Clime 31:30
Great. Thank you, again, so much for being here. I know that this is gonna be a blessing to so many. We just appreciate your time and your wisdom that you're willing to share with all of us.
Sandra Peoples 31:41
Oh, yeah. Thanks so much for the invitation.
Sara Clime 31:54
Thank you for joining us this week on Take Heart. If you are loving our podcast, would you do us a favor and leave a review on whatever platform you're using to listen to our podcast? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments or would like to share your story with us, follow the links in our show notes. We would love hearing from our listeners.