Take Heart

Celebrating the Uniqueness Of Your Family: Sibling Collaborative

• Amy J Brown, Carrie Holt and Sara Clime • Season 2 • Episode 83

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As special needs parents, we have a deep-seated fear that we are messing up our kids. It’s important to remember to trust God to give us what we need., to nurture the soil of our children’s hearts, and love each one in their own unique way. In this episode, Sara, Amy, and Carrie discuss how to help your children feel heard, things they might have changed in their parenting journey, and how to celebrate the uniqueness of your family. 

April 26, 2022; Ep. 83

Timestamps & Key Topics:

  • 0:00-    Intro
  • 1:36-    Fear of Messing Up
  • 5:04-    Nurture the Soil
  • 10:02-  Life’s Not Fair
  • 14:05-  What Would You Change
  • 26:30-  Younger Self
  • 34:33-  Closing Prayer

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Carrie M Holt  0:00 
Welcome to Episode 83 of Take Heart, we are so glad you're here today. This has been a great month hearing from siblings. If you haven't listened to episodes 80 through 82, yet, you'll want to go back and listen to them. They are fantastic. You can find all the information about our podcast and Take Heart, links to our newsletter, resources, and an entire transcript of this episode on our website at www.takeheartspecialmoms.com and links in the show notes at the bottom of this episode. Thank you for joining us today.

Carrie M Holt  1:36  
Hi there, this is Carrie M. Holt today, and today I am joined by Sara and Amy, as we're wrapping up this month on the topic of siblings. I do feel like this topic can be such an emotionally charged one because there is so much fear around messing up our children. Amy and Sara, do you agree with this, and what are some thoughts that you have about that?

Amy J. Brown  2:00  
I definitely agree with that. As you know, I have six kids, and I spent a lot of time wondering how my parenting in the midst of attachment disorder would affect them. I think that there's just so much riding on this mothering gig. A lot of it is pressure from what we see on Instagram or on social media or from what other moms tell us, unrealistic expectations we have of ourself. So I do agree that we're just so afraid of messing them up. As I said, I have six, my oldest is 29. When I think back to all the ways I thought I was gonna mess my adult kids up. Now that they're adults, and they've talked to me, I realized that so much of what I thought was really messed up. They don't even remember. So that's encouraging to me, that God, I don't know, erased their memory, or probably my perception of how I handled something was overblown.De

Carrie M Holt  3:12  
Definitely. I know when I was interviewing my boys and mine aren't out of the house quite yet, I had a really hard time just holding my voice together. I realized how emotionally charged I was interviewing them because when you hear things from their mouth, it's just this affirmation that we have done a good job or we've done the best we can. God takes care of the rest of us. There's just the sense of relief. Sara, how about you, what do you think about that?

Sara Clime  3:48  
I agree with you guys. I think I'm very grateful for the selective memory of my oldest son. He is out of the house. There are just times when I'm like, I remember sending him off to college thinking. Is he too soft? Is he not hard enough because he's such an empathetic person? Then I realize he's exactly who God made him to be. I don't know, I think for me, I have to remind myself that there are people who had a lot worse off than my children did, and they turned out pretty well. I think even sometimes I think even in spite of our parenting, they're going to turn out well. Not that you don't try your hardest, but I'm just glad though, that whenever my son would talk about things that he remembers being weird or not perfect. They're even some in my head where I'm like, well, that's not that big of a deal. I'm waiting for the big stuff, so I'm trying to be empathetic on the small stuff. But yeah, it's just like Amy, you said, God erased their memory on some of the stuff that I really, really messed up on.

Carrie M Holt  5:04  
So that makes me think about I've been really encouraged lately by a podcast by Adam Young. He talks about the big six, which are six things that children need from parents. Adam Young is a counselor and pastor, and I refer to him in my individual episode, and I'll put a link in the show notes again. He does have a free handout on his website, and about these big six, which are just different things that kids need from their parents like attunement, engagement, a willingness to repair- to go to your kids and apologize when you really mess up in that they see that we're human and things like that. One of the things that he says that I think is kind of funny is that, we only really need to get it right 50% of the time. Honestly, it just took this huge load off of my shoulders, because when you think about 50% of the time, it reminds me of commercials or something. I'm not, I'm not encouraging all of us to only give 50% of our effort, but I think it goes back to the fact that we don't have to be perfect. We do put all this pressure on ourselves to be perfect. I think also that the devil preys on our fears. When we have these fears, we start to believe these lies about our parenting. What is a lie that you have struggled with, or something that you know about that parents believe about raising their neurotypical children? Amy, will you start us with that question?

Amy J. Brown  6:43  
Yeah, I guess what I would say is, we have this idea or this lie that it's all up to us. I love that 50% because it's not all up to us. I like to think of it as soil. I'm not the gardener, I don't make things grow. My job is to do my best to water and make the soil be like it should be, but other people build into our kids. It's not all up to us, and we are not the gardeners. We don't make things grow. We just help that along. I've had a lot of struggles in that in my own personal life when a child doesn't do what I think they should have done. Did I fail somehow? Then, I remember I'm not the gardener, and I can trust God with our children. I think that's the one that I've struggled with the most. I hear moms say to me all the time, I just can't do it all. I'm not doing it all. I always say, "You're not supposed to do at all, you're supposed to give them to God and trust Him for the grace in the places where we lack. That is the bottom line. Trust him for those places where we lack.

Carrie M Holt  7:58  
Yeah, that's really good. How about you, Sara?

Sara Clime  8:01  
I agree with everything Amy just said. I think that not only are we not supposed to do it at all, I think that we owe it to our children, to show them that parents aren't perfect. It's very well might be in their future that they become parents one day. If we've done everything to show them, we're not ever angry, we don't lose our cool. We always have the Pinterest perfect PTA meals, whatever, or the Valentine's Day cards for the classes and all this other stuff. They're going to see a standard that isn't attainable. I think that it's in their best interest that we show them that it's okay not to be perfect as well. I mean, again, as you said, you don't want to shoot for 50%. I think that acknowledging we aren't perfect. There is only one perfect person and that was Jesus and so we can try to attain it, but that doesn't mean that we're ever going to even come close to that. As long as we try and show them, I would love my son to walk away and say my mom tried her hardest; she was a hot mess sometimes. I would rather him say that than to say my mom was perfect all the time, and I will never be able to do that. I am a horrible father. I'm a horrible mother. I wouldn't want that for him. A different type of lie that I see, what I believed was that my son wasn't allowed to be angry at our situation. If he was angry at it, then that made him less empathetic. That was just a lie that I learned very early on that. It's okay for him to realize that this isn't a perfect life either.

Carrie M Holt  10:02  
I think all that is just so good because it reminds me of the story of the water being turned into wine, the story of the boy bringing his loaves and fishes to Jesus. It couldn't feed the crowd of 5000 plus women and children, so we know there were more, but he was faithful with what he had been given. I know one of the lies that I have really struggled with. I don't know if it's from my childhood, or this is just how I think, is that I have to make things all fair and equal for my children. If Toby's in the hospital, then they deserve to have this made up to them. One of the things I've realized, as I've gotten older is, first of all, I'm not doing my kids any favors, by teaching them that everything in life is fair and just. I know that, but ye there were times in my parenting through the years that I've tried to fix things for them. I think deep down that deeper fear is that they're going to resent their brother, and be angry with him like you talked about Sara. Again, I think that goes back to trust, right? Trusting that God can handle their big feelings, trusting that God can come to them where they are, then also just realizing that even families who don't have children with special needs, they have hard situations too. No family is perfect. We all have things that we struggle with. We all have cars breaking down on vacation, people getting sick on planes, and things ruining life. I think you just forget that. That's life, I think C.S. Lewis says something about, I can't remember exactly the quote, but if you always wait for life to be calm to live, you're never going to live. Is there anything either of you wants to add to that?

Amy J. Brown  12:17  
I want to add to that, Carrie, the game of trying to keep it fair is one, no mom is ever going to win. Ever. It's exhausting. So for our listeners to take that off your plate, I think is an important piece to remember. Like I said, I have adult kids and sometimes they need money, they're starting out buying a house. Not everybody gets the same amount of money. If I tried to keep everybody fair. If I said, "If I take this kid out for lunch this day, so I have to take this kid out." It doesn't need to be added to our plate. God makes up for the places we lack. That's just not something I want anyone to feel like they have to do. Like I said, we have a big family, I don't think any of them felt like they got the raw end of the deal because every kid has different needs. Life isn't really fair most of the time. So I've hoped to encourage our listeners not to feel like that's something they need to do.

Carrie M Holt  13:16  
Yeah, and God doesn't keep score with us, either. He doesn't keep a record of wrongs. That's just exhausting just to think, oh, I gave this kid this much money, or I did this with this child. I think I heard the illustration one time that your child's heart is just kind of like a bucket and you just want to keep putting little things into it, and filling you know, filling up there the love languages and asking God to equip us to be the parents that we should be.

Amy J. Brown  13:57  
God loves us each uniquely, so we can leave our love for our kids each uniquely and give to them in a unique way. I don't think there's anything wrong with that. 

Carrie M Holt  14:09  
Definitely. The second question I have for us today is what is something that you would change in how you've approached raising your other children, your neurotypical children? Is there something that you can think of throughout your journey that you might do differently or think differently throughout your journey?

Amy J. Brown  14:34  
I actually can think of two. The first one is because I have adoptive kids who came from some difficult situations. Initially, when we would have issues I would say to my bio kids, "Oh, come on, guys, buck up. Your brain wasn't exposed to alcohol. You weren't in an orphanage." Yes, those are true statements. There are times when you need to say it. I wish I hadn't done that, because honestly, that is not something that helps the situation (a) when you're frustrated with the sibling. Secondly, it's really not my kids, that wasn't their choice right to adopt. They didn't ask for it. Not that we don't have compassion, I feel like all my kids have compassion. I wish I wouldn't have put that before them. I didn't want them to have to swallow their feelings, I guess. That probably made them swallow their feelings. I stopped doing that fairly early. I wish I hadn't done that. I think the other thing I would say is when I want my kids to be able to come tell me what they're thinking, and their perspective. I think it's episode 38 on the guilt I talk about, we had to do some family sculpting therapy when my daughter was in residential treatment, and my son, Evan, displayed how he was feeling in a very brave way. I saw what he was saying, and I immediately took that guilt on myself and negated what he said. I immediately turned the fingers back to me and was like, oh, I should have done better instead of just honoring that space where he was being honest about his feelings. If they come to me with their perspective, I don't want to qualify it as "Yeah, but I was doing the best I could, yeah, but that day was really hard for me." I just want to hear them because to sit with somebody in hard spaces and hear them that is going to go a really long way in bonding that relationship with your child. Those are two things that I have thought a lot about as I've continued to parent, even as adults. I will say to you, your adult kids will come to you at some point and go, "You didn't let us watch blah, blah, blah, we didn't think that was fair." You have to go, "okay". I'll hear stuff like that, as they become adults, I'm just gonna warn you. In that regard, not trying to qualify it with, "Well, here's why, or here's what was going on with me, just hearing them, I think makes them feel heard. 

Sara Clime  17:03  
I think mine is really similar to yours, Amy. Growing up, I always said just let them hate the brussel sprouts. Whenever I was growing up, in my generation, our parents would say, "There are starving children in Ethiopia." I don't know why they chose Ethiopia at that time. Growing up, there are starving children in Ethiopia. I remember thinking, and I know, and I hate it for them, but that doesn't make the brussel sprouts, any easier to digest for me. It still doesn't make me like them. I would go back and let my son say everything, without that qualifier of, "Yeah, he's on the spectrum, he doesn't understand. Just let him have that toy because he doesn't understand about sharing." I need to be okay with him not being okay, in those moments because I was not. I wanted to smooth it all over and you just can't. I think that teaches them to learn how to regulate their own behavior as well. After I learned that, it took me a long time, but I would tell myself earlier on to let him regulate his own behavior in that regard than me trying to force it on him. He would eventually say, "Yeah, you're right, that I shouldn't have done that." I think we're just perpetuating shame on them. I think it actually could drive a bigger wedge between them and their other sibling if they're never allowed to say how much they hate something. My sister and I both were neurotypical, and I said horrible things about her. I don't like her all the time. I thought she was unfair. And we turned out pretty, pretty decent. But that was one thing. Then the second thing, I would change is I would tell the younger me to reach out to other people. It's okay to go to our teaching minister was really close with my eldest son, they're very close. I said earlier, I would have said, "Hey, he's struggling with this, and I don't know how to help him as well as you do. Could you help? I think I would let people in on the hard stuff more. Instead of trying to make it all seem so good, and I was handling it all okay, is just admit I need a little help from somebody who might be able to connect with him more. So those would be mine.

Carrie M Holt  19:44  
I think that's really good because I think it's hard sometimes for us too. I've really struggled. We've finally started seeing a counselor. I know when I finally decided to make those appointments, I had this lie that I had failed as a mom, that I wasn't enough, because I couldn't fix all my kids' problems. I couldn't facilitate that. I think it just goes back to what Amy said earlier is, you need other mentors, whether it's a counselor or someone at church. We need other mentors to speak into our kids' lives. I think there's some statistic I heard recently about, if your child has other mentors outside of you, as a parent that are discipling and mentoring them, they're more likely to not walk away from their faith than someone who just only has their parents. I think that that's really encouraging. For me, one of the things that I would change is how I approached, raising our kids. Now our boys were super close together, and there was this huge balance because when Toby came along, he had all this medical stuff going on. I just kind of had parents, aunts, and uncles just kind of whisk our kids away from the situation. I think rightfully so when they were three into they were little they couldn't necessarily understand or regulate that kind of stuff. I do think as time went on, and some of this might be because we've had nurses in our home since he was about three months old. I don't think I included them enough in just the care of Toby. That doesn't mean making them responsible for it, but just teaching them about it and making them included in it, so it feels like this is a family thing. We're all in this together, not this segregated. This is always mom's responsibility, or this is always dad's responsibility. But as a family, we're all in this together. I think I would just encourage you if you're listening to find those creative ways. I know sometimes there are child life specialists at hospitals. There are counselors that can help you with this, where you can learn how to, in child-appropriate ways to bring your other kids alongside and teach them whether it's about the diagnosis or the behavior. This is a way that they can help in their own little way along, the way. 

Amy J. Brown  22:30  
I would say too I'm gonna say something a little bit opposite of that. My kids were older, when we got our adopted children. Yes, I agree with you completely, but also there's a time, especially when they're teens, to feel like they can tap out when they need to. It's a different situation, but our daughter can get really out of control in social situations. She would steal. We'd go somewhere, and she'd steal, and our whole family would be like on high alert. The kids would come to me and say, "She ate sugar or she did this,"  and I would say you know what, "You don't need to worry about that. Let me be worried about that." Because I think they wanted to support me. I remember the older kids were always really good about helping watch the younger kids. We had gone to pick up our son from an orphanage in Bulgaria. My older kids were like, I don't know, 17, 18, and they were watching the younger kids along with another adult in the house. They said, "Mom, we can't do this anymore." I'm like, Okay, I'm glad you told me that. I'm not going to ask you to do it. It was just too much. It was too much. I think there's a balance there. I see what you're saying that always whisking them away, they need to be involved. But as they get older, they also need to be able to say I need a break from this. At least that's my experience with kids with behavioral issues.

Sara Clime  23:56  
Don't you think, Amy that since they did have that responsibility of that, maybe they had a better appreciation for you and your husband when they said, "I can't do this anymore, I need to tap out? Do you think that that afforded them more of a realization of wow, mom and dad have to go through a lot?

Amy J. Brown  24:16  
Maybe I think we were homeschool families or it was always home all the time. I think they knew as much as they could. Yeah, definitely that probably helped them see okay, this is how they have to deal with this. I want to go back to something else you said Sara, though. Letting your kids hate the brussel sprouts. I think sometimes we think okay, we cannot let them feel this way because what if they grew up to be heartless people. I don't think you're going to grow up to be a heartless person when you live in a family that is showing love to people with disabilities. You just aren't. You're seeing not only in your own family but in other families you interact with; you're seeing love played out that way. I think taking that pressure off a mom is an important part two.

Carrie M Holt  25:09  
It's funny that you said that because one of the big six that Adam Young talks about is the parent's ability to deal with those difficult emotions with their kids. I know there's a fine line between teenagers yelling at you that they hate you and things like that, but just that you can be a safe place for them to process those emotions. If you can't, you can find help for them, and be willing to say, "Okay, we need we need a professional, we need somebody to help us do that." That's something I've learned, just as I've gone on, and my parenting is I just have to learn how to hear them, as you said, and see them. Honor the spaces that they're in emotionally, and spiritually, too. So, what is a word of advice that you would give to yourself in the early days of your parenting if you could go back and tell yourself one thing? I think about our listeners. Sometimes there are parents that I know their first child is their child with special needs, and they wonder if they should have more children and things like that. I know there are many factors that go into that decision, but what is one word of advice that you would give?

Sara Clime  26:30  
I think for me, it would be to get creative and think outside of the box. We aren't typical parents. I mean, the jig is up. Everybody realizes it. I think sometimes we're the last to realize that because I think that we want to so much have a normal life for ourselves and our children that we forget that nobody really does. There's really no such thing as normal, and just to get creative. I have one example is my oldest son, Connor, who played soccer, loves soccer. My husband coached it. In his senior year, his team went to districts,  and they hadn't been to districts in years. It just so happened to be on my other son TJ's appointments where we traveled. We flew across the country to his appointments. We couldn't miss it. It was part of a clinical trial that was baked into his normal medical team. There was just really no getting out of it. I remember thinking, I'm going to miss the last game that he's ever going to play, most likely because he wasn't planning on playing in college. I was devastated. I cried the entire way out to the East Coast. I cried through the appointments. What we did was I told my husband, "Can you stream it? I don't even care if it's on your phone, I don't care if I can tell what's going on. I just want to feel like I'm there. I don't even care if I can see the ball." He was talking to some friends and left it up to some other moms to figure this out. They set up a tripod, they put a phone up on a tripod, and he brought my senior mom shirt. They fashioned out this tripod with my senior mom's shirt on it and took pictures of it like I was watching through it. I don't think I once saw him play because it was all just a big blur, but I was there, and he came up to it afterward. I remember somebody came to the hotel that we had gotten to know really well. They came to deliver some food that we had ordered because I didn't want to go anywhere because I wanted to be able to watch the game. He brought food and he asked, "What are you watching?" "Oh, it's my son's senior game." S,o he stood there for a while and watched. He said, "I can't see anything." I'm like, I can't either, but I know I'm there. My son just thought that was the funniest thing. For him, it was mom couldn't see anything, Mom wasn't there, but man mom gave it her all. Not only that, but Dad helped. Friends helped. Everybody knew how much mom wanted to be there and how much mom cared. People pulled together. It goes back to that it's not going to be fair, it's not going to be perfect, but get creative because the most important part is when he's 50, it's not going to matter that mom missed his last districts game really. It's going to matter that mom cared enough to try,  and mom cared enough to really get creative and people pulled around him. That's what he's going to remember. I think that's what's going to mold the character more than me making sure I'm at every game and that I'm doing everything just perfect. I would give myself that advice early on to get creative.

Amy J. Brown  29:45  
I love that. I guess I would say I have a couple. Number one: ask for help. We've talked about that already. With that is lower your expectations. You have to realize that you're not going to be able to do everything. As you said, Carrie, add other people into their life. We had a similar situation where it didn't involve my special needs kids, my mother-in-law was in the hospital a state away. She was really sick. We had to leave one of our kids on their 10th birthday, and I just called friends and said, "Okay, here's the bonfire, here's the stuff." They had a big old time. I mean, I missed it, but that's okay. I also think that it's important to celebrate the uniqueness of your family, instead of like, we're the family that always has to do this. Now as my kids are older, we crack up at some of the ridiculous predicaments we have been in with kids with RAD. I think that's important to the uniqueness of our family, and you need to have a sense of humor.

Carrie M Holt  29:51 
Yes, for sure. I think too, it's really important to just relax and let go of the guilt because if you're always holding on to this guilt of I have to do this, I have to do this, you're not going to be able to just enjoy and play with your kids. Recently, I've been reading Kendra Adachi's book The Lazy Genius, and she tells this story about how she was just trying to do yoga. She would do one pose for two minutes every morning. I think that's where we have to start. We just have to start small, and remember that things don't have to be big and, and huge. When we're when we look our kids in the eye, when we work hard to show them we care throug having our mom shirt at the soccer game, or, you know, we can laugh and create this family culture of love and care for one another, that that's the most important thing that you can do. I know there are some great resources out there on this topic. I don't know if either of you have any that you would like to recommend. I know one that was really important to me was listening to episode 47 when Sara interviewed Sandra Peoples. That was a great interview, Sandra Peoples has a son with special needs, and she grew up as a sibling. She just had some amazing things to say. I'd like to put a plug in for episode 47. That was really good.

Sara Clime  32:23  
Yeah, I was gonna say her too, because like you said, she's a sibling. She's a mom, and she's a ministry leader as well. She comes at it from a lot of different angles. I like how authentic she is in every single angle of it. Yeah, she's a great resource.

Amy J. Brown  32:41  
I would also add the love languages because that's your secret tool. Instead of doing all the stuff, you think your kid's gonna love if you know they love gifts, or quality time, it doesn't take a lot of time. You can do little bits of things, but if you know what makes them tick. I would also say the love language books, definitely. I'm going to go back to one of the things and say, that I always try to delight in what they delight in. I do not care about Marvel movies. I don't even know anything about how it works. I don't really care about Star Wars, but man have I listened to a lot of what they've delighted in. I think that's important too. I really am interested in what you're interested in.

Sara Clime  33:22  
Speaking of Marvel, I tried to get really interested in it. I took TJ to a movie, and every single time Marvel comes on anything with anything. He's like, don't go to a movie with mom. Darn it, he knows mom tried. He doesn't ever want to do it again with me.

Carrie M Holt  33:45 
Yeah. So I know that book that Amy mentioned is Sharing Love Abundantly In Special Needs Families. That's Jolene Philo and Gary Chapman, and that is a great book. I know there are several more out there. I know Joni & Friends has a ministry. They have camps for families. Our own family has found a family camp that we go to every summer that has created a wonderful, loving family culture. It's not necessarily designed for Special Needs Families, but it's called Gull Lake Ministries in Michigan. You just have to find what works for your family, and how you can create that culture of love and acceptance of one another. Amy, would you close us in prayer today?

Amy J. Brown  34:33  
Yes, I would be happy to. Heavenly Father, we thank you so much for the opportunity to be mothers of our children. We pray that you will give us the grace as we parent them. We trust you with our kids, with their hearts, with their souls, with their bodies. We ask that you would grow them in the way you want them to go. Where we lack, Lord help us to abide you because you are the WAY the TRUTH, and the LIFE, and help us to leave our children in your loving capable hands. Amen.

Carrie M Holt  35:20 
Thank you for joining us this week on Take Heart. Our prayer each week is that your heart is encouraged. We are so grateful that you are walking on this journey with us. Be sure to subscribe to our monthly newsletter, and follow us on Instagram or Facebook at takeheartspecialmoms.com If you have any questions about this episode or comments, please follow the links in our show notes because we love hearing from you. Thank you for listening and listen in next week as Amy will begin sharing about our topic for the month: fighting daily discouragement.