There are blessings and difficulties when growing up with a sibling who has special needs. In today’s episode, Carrie’s oldest boys talk about some struggles, the benefits, and most importantly the spiritual impact it’s had on their lives with some practical tips for how others can support families of children with special needs.
April 12, 2022; Ep. 81
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If you enjoyed our podcast, please...
There are blessings and difficulties when growing up with a sibling who has special needs. In today’s episode, Carrie’s oldest boys talk about some struggles, the benefits, and most importantly the spiritual impact it’s had on their lives with some practical tips for how others can support families of children with special needs.
April 12, 2022; Ep. 81
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Carrie M Holt 0:00
Welcome to Episode 81 of Take Heart. I'm so glad you're here. This month we are talking about special needs siblings. Today is an interview with my two oldest sons who have grown up with their brother who has special needs. There are some great takeaways in today's episode, and I promise you that the answers that my children give were not scripted by me. You may hear my voice crack a little bit in this episode because it can be emotional hearing from your own children and their perspective and the things that they've learned along the way. You can find all the information about Take Heart links to our newsletters, resources, and a transcript of this episode at our website www.takeheartspecialmoms.com.
Carrie M Holt 1:47
Hello there and welcome. This is Carrie M. Holt today. We're doing an episode with siblings. I'm here today with my two oldest sons, Conor and Garrett, and what better way to learn about siblings is to hear from them in their own words about their experiences of growing up with a brother with special needs. First of all, I'm going to have them introduce themselves. So Conor, why don't we start with you?
Conor Holt 2:13
Hey there, I'm Conor, I am 18 and a half years old, about three and a half years older than Toby. Some things that I enjoy doing, first of all would have to be basketball. That's kind of what's taking up most of my time right now. I also enjoy playing board games, card games, reading, hanging out with friends, that sort of thing.
Carrie M Holt 2:34
What year are you in school, and what are your future plans?
Conor Holt 2:37
I'm kind of a hybrid fifth-year senior just doing online college classes right now. I'm accepted and going to attend Cedarville University in the fall, majoring in something in the business or finance world.
Carrie M Holt 2:52
Great. So how about Garrett, can you tell us a little bit about yourself, your age, grade, and just where you're at in the birth order with Toby?
Garrett Holt 3:00
Yeah, absolutely. My name is Garrett. I am 17 years old and a junior in high school. I'm about 22 months older than Toby. Just a few things that I like to do in my free time is I also play basketball. I've played basketball for about three years, and I've also played the piano for about seven.
Carrie M Holt 3:21
So let's just get started and talk a little bit about what is one thing that has been difficult about having a brother with special needs? Conor, why don't you start us off?
Conor Holt 3:32
Yeah, for sure. I mean, the first thing would be just obviously the parents have to pay more attention to the child with the special needs, so in this case, Toby. You know, that meant maybe it was carpooling to school with different people or having to have things canceled because of different hospital stays or doctor's appointments. I know, I was fairly young, when that was going on more frequently. Obviously, it still happens now, but not with as much frequency, but it was definitely tough. I can remember being confused and disappointed at times. That would definitely be one thing that was difficult and still is difficult at times.
Carrie M Holt 4:17
What is one thing that you can say in those situations that a parent should do for you like when you were younger and you were confused about things that were going on? Was there something that we did that was helpful or something that we could have done better? Go ahead you can be completely honest in just thinking about that.
Conor Holt 4:41
I mean, I don't know if there's one thing necessarily jumps out right away. Being clear, and explaining things just helps with confusion and fear, right? Those things are connected, so explaining what's going on explaining as best as you can what's going to happen obviously. It might not be very clear for the parent either. Honestly, that's what sticks out to me the most would be just explaining what you can, asking questions, and getting their perspective on things really helps just clear the waters, and make things easier for both the child, in my case and the parent, in your case to understand.
Carrie M Holt 5:23
Yeah, that's really good. Garrett, how about you? What has been something that's been difficult for you for having a brother with special needs, and you guys are closest, closest in age to one another?
Garrett Holt 5:35
Yeah, absolutely. I think one thing that's been difficult, has just been balancing, just how to treat Toby as my younger brother, and also as a special needs child. We all have to remember that they are just as similar or different as you are I, so treating them like a sibling, as someone that has ideas, and has things that they like to do, but then also being able to balance treating them with a little bit more care, just being a special needs child.
Carrie M Holt 6:13
That can be a difficult struggle. I know that with you guys being closer in age, and just the ages that you are 15 and 17. There are just those teenage arguments that happen and things like that. I think what I hear you saying is that sometimes it's hard to know when he might be having difficulties because his brain might be working the way it is or because he's thinking a different a certain way; you treating him normal, but also trying to understand where he's coming from? Is that what you're trying to say?
Garrett Holt 6:48
Yeah, absolutely.
Carrie M Holt 6:51
Garrett, what would you say has been a benefit? Think about maybe when you were younger, or you can think about even now as time has gone on? Maybe there's something that sticks out in your mind, that has been a benefit of having a brother with special needs.
Garrett Holt 7:06
Yeah. So one thing that has stuck out to me is just all the really cool experiences that as a sibling, we get to go on with having a special needs child for a sibling. I can remember, a few years ago, we got to go to Disney, as a Make a Wish Trip. That was Toby's wish was to go see Mickey down in Florida. So, we got to go down there. Just over the years being able to go to amusement parks, or to go to sports games, and just getting free tickets to go to that.
Carrie M Holt 7:38
One of the things Garrett's talking about is that locally here in Ohio, we have an organization called A Kid Again. Their motto is "Giving life-threatening illnesses, a timeout." That's not just a timeout for the child, it's a timeout for the whole family. It's been really a neat thing because this organization has now spread to Indiana, I believe Michigan, and is in Philadelphia. It's called A Kid Again, and I'll put that link in the show notes in case you're interested in finding out more about it. This organization is trying to start up different branches across the country, their idea is to spread. What was great about this organization is that even if Toby ended up in the hospital, the rest of the siblings could still go to the events. They try to plan things about once a month, and it might be a professional hockey game, or it might be to a local amusement park or something like that. I have enjoyed that we've been able to do that as a family and for the entire family to have that benefit. How about you, Conor, what is been a benefit that you see of having a brother with special needs?
Conor Holt 8:47
Well, certainly, the things Garrett talked about stick out as well, but maybe another perspective would just be character growth, personal growth, and even spiritual growth. I guess one of the facets that could be explained is, I'm naturally, as a firstborn, not as compassionate or sympathetic, those sort of things, more of a black and white justice-oriented person. Having that experience with Toby over the years has taught me to be more sympathetic, to be more compassionate, to be more gracious, even in different situations. That's benefited me in my family life and just with friends, understanding people now that I'm working with - different types of people. I know that those benefits and those experiences will last way beyond when I'm out of the house and interacting with all kinds of people in my life.
Carrie M Holt 9:49
So Conor, I know that you recently you're taking an English comp class through a Christian university and you recently wrote a paper for your class about your faith narrative. Would you mind sharing just a little bit about that, because I know that it was about Toby, and how he has impacted your life spiritually?
Conor Holt 10:09
Of course. So kind of my main thesis was about how my experiences with Toby and with our family have changed my perspective and allowed me to live with hope and joy that not many people have, are able to live with, or understand even. In I Corinthians, it talks about how the Lord uses what is weak to the eyes of wise people; he uses those people, uses what is weak, to be strong. I've seen that with our family. A lot of people with an outside perspective would never desire, having a sibling with special needs, or if they're a parent, they would never desire to have a child with special needs but my parents kind of have always said that if they could change things they wouldn't. In recent years, I've understood that because there is an underlying hope and joy that we can live with that I have seen us actually live out. It's just shifted my perspective, from a horizontal one, on a horizontal level and a worldly level, things don't make sense, and there's fear and confusion. With a vertical perspective, it all changes and it all. It's still confusing, and there's still fear, but it makes more sense because we know that we don't understand everything, that there is a purpose and a plan, and that we can hold on to that.
Carrie M Holt 11:47
I loved how you just talked about how you have a different perspective about going through trials and what that does for us spiritually. Honestly, moms, those who are listening out there, I had such a hard time reading his paper. He asked me to read it for editing purposes, and I ended up sobbing. Conor said, "Well, Mom, you know, I didn't mean to make you cry." Deep down what we all desire for our children is that, and again, I know Conor's not completely grown, but just that we desire for our children to walk in truth. Right? There's a scripture that talks about that, and to understand that the deeper purposes in life and meaning in life is to know God better and to walk with Him and to have him walk with us through difficult things. So how about you, Garrett? Hopefully, Conor didn't say everything that you wanted to say. How has having Toby as your brother impacted your life spiritually?
Garrett Holt 11:47
One thing that sticks out to me, is just being able to witness the power of prayer and just God's power overall. I can remember when it was a struggle for Toby just to eat 15 or 20, Cheerios, and just how we prayed. Now today, he can eat as a normal teenager would. Being able to witness a family grow closer together because of someone's situation, and Toby just being able to conquer the things that he's conquered, and for us just to be able to see him grow.
Carrie M Holt 13:29
Yeah, that's really good. I love how you've brought up the power of prayer and not only just within our own family but the people that have come around us, the extension of the church that has come around us. By the church, I mean, the body of Christ across the world. We've had people praying for our family for many years, and that has just been such a blessing that I think we all have learned and experienced. I want to share a little story. You may have heard me talk about this on the podcast before, but before Conor and Garrett's younger brother came along, they had a friend with special needs. His name is Evan. Evan and Conor were born less than 24 hours apart in the same hospital. Evan has a rare form of Spinal Muscular Atrophy, and he also has a younger brother, who is really close in age to Garrett. These four boys have been really close since birth. I think it also has given them a unique perspective having both a brother with special needs and then a very close friend with special needs. So Conor, why don't we start with you. How has having Evan as a friend helped you with your brother or vice versa? You can answer it from either perspective.
Conor Holt 14:53
Yeah, so I think first off, having Evan as a friend has made me realize that I can be a friend to my brother, and having Toby as my brother has helped me be a better friend to Evan. It's kind of this loop of benefits if you will. I guess maybe one practical example of that would be growing up with Toby, knowing what areas are more handicap accessible for playing a card game? What does he need? Does he need more explanation? When we strap Toby's wheelchair in the car with the tethers, I know how to do that when we're with Evan and in their family's van as well. Those are just some practical examples. Like I mentioned, having Evan as a friend, and, yes, maybe the interactions I have with him, some people wouldn't consider, "normal", on some levels on a physical level. On every other level, our friendship has been just as strong as that with anyone else. It's allowed me to kind of again, it's a perspective thing, allowed me to see that same thing can happen with Toby and my other siblings. It's tough to be a friend to your siblings, sometimes, as I'm sure anyone was siblings would agree, but even more so when they have special needs, and there are different challenges. It's just allowed me to learn and to, change my perspective, and kind of be more of a friend to Toby and not just a brother.
Carrie M Holt 16:30
Yeah, that's really good. I love how you said, it's just this looping benefit between both relationships. I'm sure as you see people in the community or you see people, once you go to college, that it's just going to give you a different perspective and a different comfort level with approaching people who might be different than you or have a disability. In closing, we're going to focus on two questions, and the first question is going to be. Maybe you're out there listening, and you are a parent who does have multiple children, or you're considering having another child and you're nervous about that sibling dynamic. Garrett, what is one word of encouragement or word of advice that you would say to parents, who are raising children with special needs, and then who have siblings with special needs?
Garrett Holt 17:27
Yeah, so one piece of advice that really just impacted me was the way that my parents were very clear, and communicated a lot with us, even as young boys. When Toby would have an emergency, and he would have to go to the hospital, just knowing where our parents would be in relation to school, or sports, or how long Toby might be in the hospital for, just having that extra assurance that we know where our parents were, and that we knew where Toby was going to be just really helped.
Carrie M Holt 18:06
Did it help you not to be as afraid to have that clear communication or to know, grandma's coming? This is what this is going to look like, to the best of our knowledge, obviously, we know emergencies can come up. Is that something that was helpful for you, too was to know who was going to be caring for you, and where you were going to be at certain times?
Carrie M Holt 18:29
Yeah, absolutely. Conor, how about you? How would you answer that question? Do you have a word of encouragement or piece of advice? Maybe somebody is a little bit later in their journey, as a parent, what would you say to them?
Conor Holt 18:43
Yeah, I mean, I think one thing that sticks out to me as an encouragement would be that you don't need to feel guilty about having to take care of your child with special needs. They obviously need more attention and care. That's how it works. And if your child or children are older, the siblings are older, they will understand that as well. It doesn't mean it will be easy for them to experience and go through the trials. You're going to feel guilty at first. That's the initial reaction if you're a parent to your child. I guess you could say it's warranted, but it's not necessary. The siblings understand when we were going through it, we understood. gain, it didn't mean it wasn't easy, but just that communication and those things that Garrett was talking about were really important and be encouraged. There's no need to feel that extreme guilt for those other children.
Carrie M Holt 19:49
I think that's, that's really important because we do especially as parents, we do struggle with guilt a lot. We're often wondering, have we done this right? It can be a struggle. I would encourage you as a parent is to rely on the Lord and pray for wisdom because I have certainly made a lot of mistakes in having four children and one with special needs. There are things that God has been allowing us to do well as parents. The boys and I were talking earlier, is that it doesn't have to be anything big. One of the main things that children need as they're growing up is attunement. It's you being tuned in to their needs. They both talked about different times in this podcast, that communication, setting up expectations and communicating on their level, and being willing to show them love. I know when there were times that Toby has been in the hospital, and I get to come home for a night because my husband takes a turn or something, we'll just sit and play a game or we make sure that we have dinner together. A meal is usually being brought by someone else, so I don't have to spend that time cooking, but it's just that time to spend together. We're not trying to make up for the bad things that are happening to the siblings, but just to take that time and be attuned to your children and what they're going through. Lastly, I do know that we have listeners out there who are family and friends of families of children with special needs. What's been something that has been really important to you? I know that you guys have seen a lot of family and friends come around us through the years. They've done meals, and there are different things that they've done. What is one thing that we should tell them that has really stuck out to you that has helped you and helped us as a family? Garrett, would you like to go first with that?
Garrett Holt 21:48
Yeah, sure. So another thing that has stuck out to me is the care that people have, just even the neighbors that we don't necessarily know very well would come over and make sure that everything was okay if Toby had an emergency, and he had to be rushed off to the hospital They were offering to stay with us if our parents had to leave and be with Toby. Other things like bringing us meals. It's just also really been a blessing so that our parents can focus on what Toby needs so that we can stay home, and that just not be something that they have to worry about.
Carrie M Holt 22:28
Conor, how about you?
Conor Holt 22:30
I mean, first of all, along the lines of the meals, this is kind of silly. But honestly, if you if you're ever taking a meal to somebody like that, and they have other kids bring a dessert. It's such a small thing, but it does. It doesn't matter. It just kind of is a small thing that is appreciated, and it's fun. I don't know, that's just something that I was thinking about. Then, a story that I kind of think of along these lines is we had someone who, whenever Toby had an extended hospital stay, for whatever reason, would send us a care package, a gift box, if you will. Not only were there things in there, for Toby. it could be a stuffed animal or some candy. There were things in it for us as well, and for our parents, both our parents and for all us kids. It could be games, candy, snacks, toys, or different things like that. It just made us feel understood, appreciated, and loved. This person knew that the hospital stays were affecting our whole family, not just Toby, our parents, and us as well. Those are kind of the two things that I think of.
Carrie M Holt 23:52
Yeah, and lastly, what that makes me think of is just remember that you're all in this together. I know one of the things that parents think about and feel guilty about as they get older is that the siblings might have to step in and care for the child with special needs after the parents are gone. I think when you create a family community that is close-knit, and that loves and supports one another, it's not going to feel like it's a burden on the siblings as they get older. Lastly, I just want to encourage you as a parent, or as someone who is coming alongside a family that has a child with special needs. This is a verse that God gave me very early on in my parenting journey. It's Galatians 6:9, and it says, "Let us not grow weary of doing good, for in due season we will reap if we do not give up." Sometimes I know we grow weary and tired. I know even the siblings, get tired of their brother just like anyone else. I know as parents, sometimes we grow weary of being a caregiver, but the Bible tells us not to grow weary, that we are going to reap a harvest if we do not give up. Thank you for joining us today on Take Heart. We're so glad you're here. We pray that something that we talked about today will encourage you. I'm just grateful. Thank you, Conor and Garrett for being willing to be here and for willing to be vulnerable, and I'm so just glad to have you.
Garrett Holt 25:28
Yeah, thank you for having us.
Conor Holt 25:29
I'm glad we got to do this and hope this helps.