Take Heart

The Other Side of Special

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 127

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As we celebrate the release of our new book, The Other Side of Special, we share about how we met and what we have learned as we have spent time together collaborating on the book and our podcast. Even though our children have very different diagnoses, we have realized we have so much in common which lends itself to caring for each other! Being vulnerable with each other but more importantly, in writing this book, can be difficult but we have seen God’s redemption in those stories which motivates us to continue. We have been so encouraged by your support of us and want to celebrate with you! 

Ep.127; May 9, 2023

Key Moments:
[0:20] Our book, The Other Side of Special, is here today!
[4:42] Join us at the “Lake House”
[11:30] We learn empathy by hearing others' stories
[20:35] The importance of being honest about emotions
[25:42] Our book is not a ‘how-to’
[26:50] Pay attention to our body and name those emotions

Resources:
Purchase the Other Side of Special
Episode 100: Story Behind Take Heart

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Amy J. Brown
Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight, so you can flourish and your journey as a special needs mom. Thank you for joining us today. 

Hello, this is Amy Brown, and I'm here with Sara and Carrie. Today is a very big day because it is the birth of our book, The Other Side of Special; cue the confetti and all the noise, whatever that is. Our book, The Other Side of Special, comes into the world today; it's navigating the messy, emotional, and joy-filled life of a special needs mom. We are so excited that it's here. It's been a long process. We wrote this book for you, and we wanted to share a little bit about our experience of writing the book, how we met, and some of the lessons that we've learned in our friendship. I want to start with how we met and how we formed a connection. We've told the story before, so I'm going to keep it short. We all signed up for Hope*writer's mastermind that started in January of 2020. It was a Zoom call. You know we saw each other in the little squares, but we didn't see each other in person until March of 2020 when we flew out to California to meet. Right before we went, I called Sara because I was kind of nervous about going, and we chatted a little bit. I hadn't talked at all to Carrie. Actually, I think the day Sara walked in (I thought about this, this morning), I ran up and hugged you. Because, I thought, a person I know. She was probably thinking calm down. I don't know you. You're not a hugger, but I know that now.

Sara Clime
You did not know at the time that I was not a hugger.

Amy J. Brown
We've got a hugger on our hands. Sorry. Over the course of that three or four-day weekend, we had hamburgers together we started talking, sharing our lives. At one point, somebody said to me that I need to have a podcast, and I immediately thought no way. I told Sara. Sara said, "I'll do it with you." We tried to convince Carrie, but she wasn't sure. Obviously, we have a podcast now; we're on our third season. 

The friendship started out that weekend, with us finding that we had a lot in common. We were working on different projects. I was thinking about this this morning, I was working on a memoir-type book about parenting kids with reactive attachment disorder. What were you guys working on don't remember? 

Carrie M Holt
I was working on a book about grief, and the special needs mom and a little bit about our journey.

Sara Clime
I was working on giving your true, hard emotions to God and working through your doubt with your faith.

Amy J. Brown 
We were all working on separate projects about our emotions and our journey as special needs moms. Then we came together. We had the opportunity to write a book.

Sara Clime
I would like to point out that Carrie was not completely on board with our friendship at first, I wanted to point that out.

Amy J. Brown 
She wanted nothing to do with us apparently,

Sara Clime 
We drug her kicking and screaming, 

Amy J. Brown
Maybe, it's because I hugged her.

Carrie M Holt
Actually, I am a hugger, so that wouldn't have bothered me. I was trying to not drown drinking from a  firehose from the three months of coaching, writing coaching, and marketing and all the information that was coming at me because outside of having a CaringBridge website for Toby. I had not done public writing online. I had a bit of a blog, but I was always nervous about it being public, and navigating that piece of it. A lot of the things that I was doing were for friends, family, and sometimes friends or friends through their CaringBridge and the little blog I had. 

Amy J. Brown
Can you admit that Type-A, Amy, and Sara, who were like in your face saying we should do a podcast overwhelmed you?

Carrie M Holt
A little bit. This is how my brain works. If somebody presents me with this huge, big idea, and my husband can attest to this, I immediately go to all the tiny details of what's that actually going to look like in everyday life. What's the work gonna look like? Can I commit to it? I think that's probably part of it because I still have kids at home, more kids than both of you do. I'm homeschooling. I thought I can't do that. I knew immediately that I wanted to join the Mastermind when I was watching the Hope*writers conference online in November of 2019. I was all over that. The Lord knew.

Amy J. Brown
The Lord knew. Well, one of the things over the course of the last couple of years that we've done is we meet at a lake house. I like to say, I'm in the middle, but it's really farther for Sara to come. Sara's in Missouri, Carrie's in Ohio. I live in Michigan. We have rented a lake house, and it's been a place of work; it's been a place of connection, insight, lots of laughter, lots of tears, and sharing honestly about our lives. When we were at the lake house, we thought a lot about you, our listener and now our reader. We thought a lot about: What does she need to hear? How can we encourage her? We wish that you could be at the lake house with this. Maybe someday you will. Today, we have a virtual lake house, which is not as fun as a real lake house. This is just a space for us to share our heart for you and for our book. No matter what kind of mom you are, whatever the diagnosis is, whatever you're feeling right now, at the moment, whatever situation you're in, you belong here. 
Settle in and try to imagine you hear waves. We're going to talk a little bit about our book. 

One of the first things I'd like to talk about is that I was so shocked at how much we had in common because we have such different diagnoses. I've also learned a lot from you guys. My encouragement to our listeners is, it's great if you can find somebody that has the same diagnosis, but don't limit yourself to that, because we can encourage and learn from each other. My first question for you guys is what have you learned? What have you learned from your co-writers about their special needs life that maybe you didn't know? Oh, I didn't know this was a thing. What have you learned? 

Sara Clime
Well, I think broad strokes is that I'm learning that we all have such similar emotions. I think that we've shared that so many times. As far as the details of it, I am learning that the child in my ministry is what that diagnosis was. 

I bet that that could have been a similar diagnosis. I'm learning how to help families here locally in my community in ways that I've not before. I feel like I'm better equipped. I don't have anybody in my life that has had reactive attachment disorder, or fetal alcohol syndrome that I've known on a specific level. I've heard of it, but I haven't had anybody close to me with it, like I have, since I met you, Amy. I think that just being able to ask questions, and I'm learning. I feel that comfort level where I can ask you, "So, tell me about this. I think that it's that constant learning process. Same with Carrie, I joke around all the time that the next time TJ goes into the hospital, Carrie gets a phone call. I don't care what time it is. I know she probably cares what time it is. I don't care what time it is because it's gonna be like, we're going to the hospital. What do I need to bring, because I know she's got a list somewhere. It is probably laminated. She's probably got a list no matter what it is. You're learning how to live life, no matter what. That's what I've been learning. I think it's learning how to help others, no matter what. It's learning how to ask questions, and it's learning how to not assume. I think that we as special needs moms or caregivers to those with disabilities. I think once you get that diagnosis, on some level, you have this sense of not entitlement. I don't know what the word is, maybe ableism. I think that that's a term that we use sometimes that we think that just because we're parents or caregivers of children with disabilities or special needs we don't feel that we need to learn things. We think that well, we're in this life, then all of a sudden, we're equipped for it. I think sometimes we do have assumptions. 
We need to be a little bit more open-minded. Maybe I need to speak for myself only, but it's helped me to quit assuming as much.

Amy J. Brown
What about you, Carrie?

Carrie M Holt
I had two very specific things, one from each of you, that you've taught me. From Sara, I've learned how okay it is to wrestle with our doubts and our hard emotions with God. Even though I know it's okay to grieve. I still feel like it was this box I needed to check off to get to the other side to be okay again. That's one thing that I know I've learned from Sara. From Amy, I would echo what Sara said about the nature of trauma and not judging behavior. I know there have been times you've been talking about your kids, and I think I can relate to that because, on a small scale, I am going through a similar thing with my son. Trying to understand how his trauma-affected brain (because he's had so many surgeries) is functioning. I think probably the overarching thing between both of you is that I'm such a fixer. You guys have probably figured that out through the last two and a half, almost three years, I guess three years that we've known each other. If you share something that's going on, I want to give you solutions, I want to fix it. I want to make it all better. 

I have learned to stop doing that and to sit in the space with you guys and to say, that really stinks. that's really hard. I can't really say anything to fix it; I can't do anything to fix it. I can't offer a solution to fix it, but I can sit with you. I can pray. I can ask good questions. It's still hard for me, I still struggle with not wanting to swoop in and make you feel all better. Because I'm a caregiver, that's my personality; I have a lot of empathy. My heart hurts, and I don't want you to hurt the way that you're hurting and our listeners too. We don't want you to hurt the way that you're hurting, but as this podcast, we want to sit in this space with you.

Amy J. Brown
It goes back to what you said, Sara; it's knowing somebody else's story that gives us empathy. Before, if I'm being honest, I would have thought my road was harder because I didn't know. I've said this jokingly before, but I straight up did not know how much drama it is when there's no place for you to park. Carrie can get on her high horse about this. When somebody's in the family bathroom at the airport, don't do that if you're just a single person. I thought, oh, that's just an inconvenience. 
No, that changes how you get through the world. I don't think I really thought that much about that. The other thing I've learned is that I can come to you guys and tell you hard things that I probably wouldn't tell most people and tell you that I'm burnout. You guys are quick to give me a break and tell me to rest. I will be quick to tell Sara or Carrie to rest, but none of us do it ourselves. I mean, we're so bad at it. We are so quick to support each other, and I love that. All three of us have a hard time taking our own advice.  Just so you know, listener, that when we talk about these things, we are all still working through them together.

Carrie M Holt
A lot of times, what we're talking about is just because we're learning it in the moment, and we're struggling with it big time. Right?

Sara Clime
Right. Yeah, I can't tell you how many times I've told one of them. I have no business talking about this. I feel like such a hypocrite because right now, I am not practicing what I'm preaching. I think that that's part of it, too, is because when you're struggling with it, that's when you're learning the most about it. There are so many times when one of us will tell the other one, you need to be resting. Really, really, I need to be resting. Okay.

Amy J. Brown
I will say this if you have a friend because Sara, you've served this role for us. I think we're all getting better at doing it. Sara will push back and say, "Why are you doing that? You said you were going to rest." I've learned to go okay, I need to push back on Sara now or Carrie. We need friends that do that for us. 

Maybe you need to find a friend; you need to tell your friend every time you say I'm going to over-research this thing you need to push back or whatever your thing is that it's going to make you spin out and be anxious. I think that's really important. The other thing we talk about in our subtitle is how messy being a special needs mom is, and we are hot messes half. The last time we were at the lake house, we all burst into tears, I think on more than one occasion. Also, over the course of writing this book, we have all gone through some crises. We actually have a bonus chapter on how to navigate a crisis. We've talked so many times about how one of us had to drop out for a bit just to deal with the emergency in our home. It's hard to be vulnerable and share our stories, and I know we don't share everything because we want to honor our kids. Has there been a story or a time that you thought oh, I don't want to share this? What's been hard to share? What messy has been hard for you guys to share in the book or on the podcast?

Carrie M Holt
I think for me more recently, and I am opening up a little bit more about this. After 15 years of trying to keep Toby alive, with life being calm, I've finally come to grips with the fact that God didn't answer my specific prayers when he had his Chiari crisis when he was a baby. I can't talk about it without tearing up because it's still really painful. I think that's still okay. I don't think that means that we don't trust God. It just means it still hurts like, and I don't think it ever will not hurt because we live in a broken world. The truth is that I had a specific list of symptoms that I didn't want my son to go through, and he went through every single one, every one of them. I think that that has been hard for me to share because, over the journey of the last 14 to 15 years, I was just trying to deal with it and get through it. We talked about in the episodes with seeing a counselor or seeing a therapist. We want to go in and say, "Okay, fix this and move on." This can't be fixed, the pain can't be fixed. It's learning to be comfortable in the tension and the disappointment and learning that it's okay to live in the wrestling of this right. I think that's been hard.

Sara Clime
One of the reasons why I think it's been hard to share here and why we have to be so much more vulnerable here is because all three of us, and all of the listeners know what it's like to walk this journey. The three of us and everybody listening, we know, we can't throw on the smile and fake each other out. Right? Because we can call each other out on it. I walk into church, or I walk into a store, and somebody asks, "How's it going?" Oh, good, fine. The three of us would say, mmmm huh, right. Any listener that's a mom or caregiver would say, yeah, it's not fine. I can see through that right now. That's really hard to know that other people can call you out on it. You have to be legit with your stories. I think the hardest one that I've had to tell is coming up lately I've always been very transparent that I've struggled with my doubt with my faith. I had a very big doubt crisis when my son was diagnosed. 

I didn't share the details until recently. It was a story, Amy, that you shared, that you were on a walk, and God had really spoke to you. I'm paraphrasing, but it kind of puts you in your place. God said, "Yes, I understand what that's like." Amy said, "Oh, wow." 

Along that same line, I realized that I had started to share my story, but I hadn't shared the details of what some of the things that I had done in that doubt. I have been wrestling with God a lot lately about some of the things that I had called him. I had really called him some horrible names. It wasn't just I struggled with some doubt; it was this little ebb and flow. Now I'm great. There were some really nasty things that I had called him. I had called Him a puppet master. Do you think you can give just give me my son and then take him away? There were some really nasty things. I thought, I can't share that story. I don't want this to be a shame story. It was like God was saying it's not a shame story, it's a redemption story. You're not sharing your shame story. You're sharing my redemption story. I think that's where I had to get over myself and share the right part of the story. That's a really hard thing to do, to set your part aside and say, "I was really nasty to a really loving God." 

Carrie M Holt
You're making me cry, I'm sorry, Sara.

Sara Clime
I need to block Carrie out. It's a good thing we're not on YouTube or anything right now because I'm holding my hand up. I want the listeners to know whenever I say I wrestled with my faith. To me, that's a very churchy sentence that a lot of people will throw out there. Whenever I say that I was nasty, if Jesus was in my room, I'm pretty sure it would have been a literal wrestle. I think sharing that here was very important because I think people need to understand that part of the title of that book, "messy emotions," meant it was the last straw for me. It was either me being a Christian or setting my Christianity aside and saying, "I'm done." I was that close.

Amy J. Brown 
I appreciate you sharing that because I think there are a lot of feelings around our faith and how we talk about God, and the idea that everything's going to be tied up by the end of the episode, and you're going to be skipping off. That's been a struggle with mine, too. I've said before that someone said I can't wait to see what God's done. I thought, What in the heck is he done? This has been horrible. That's my actual thought. There's a part of me that struggled to be honest with that. When I mentor moms one on one, I say to them, there's nothing you can say, or tell me that I will be shocked at because with behavioral issues, there's so much shame. People can see your kids’ behavior. I had that last week. I got some shame thrown at me by a pediatrician about something. I think my need to take my mask down because I'm such a good little striving, A-plus, let's do everything really well, to say, "I'm still struggling with this: the shame, the doubting. Why is it this way? 

Why is it not better? I think those are important things to share. We say stories like this don't always make it on the cover of the adoption magazine. Those are stories that are happening. I know that because I get emails, DMS, and people always reach out to me. To be able to be really honest about our faith and about our emotions, I think, is so important. I appreciate you guys both sharing that. We do talk about how everything we're feeling is normal. There's nothing that you're feeling, listener, that we haven't felt and felt it deeply. Some of us may struggle more with some emotions than others. This kind of goes along with that. What emotion was really hard for me to talk about? Right out of the gate, I still struggle with fear. We just had a mental health crisis last week, and my whole body is in fear. I can't even go into my house now without feeling afraid. Even though I know in my head that I've got the tools, it's really hard for me to come off that fear.  I want to say to my listener, here are all the tools, and they work, and they do work. That doesn't mean you're still not going to struggle with fear. Fear and shame are probably the things that I'm not ashamed to talk about those emotions. Sometimes I struggle to say I'm still struggling with those emotions. It goes up and down for me. What about you guys? Do you have a certain emotion that you think, okay, this was the one that was hard to share, or that you struggled with more when you wrote the book that was harder for you to write about?

Carrie M Holt
I think mine was anger because of the impression that I got in the way that I was raised, and not necessarily from my parents, but in general because you just get these ideas as you grow up. It's that anger is never okay. It's not okay to think I'm so angry. I hate you. I still feel like that is one emotion as you said, I still struggle with it. I still am trying to help my children navigate that emotion. What does that look like? How do we feel it and talk about it with God? Sometimes I want to do it right, but maybe there isn't a right. I'm sure there is, but it's such a messy emotion. Anger is such a messy emotion. That's probably one that I am still learning about. It was really hard to write about anger. 

Sara Clime
I think for me it's fear. Fear's a big one for me. With TJ’s diagnosis, it's today is the best he is going to be. Every day he will deteriorate. It's trying not to focus on that. Then in our community, when you get on social media, it seems like, if not daily, at least weekly, a child or an individual with this disease passes away, and a parent is changing their profile picture to a candle. When you're scrolling through Facebook or Instagram, and you think oh, I'm just going to get on here for a little bit and zone out because I don't want to have to think about anything. Then there's candle, candle, candle. Well, that didn't work. Try to focus on that. With every doctor's appointment, the percentages are going to go down. I think it's returning to the fact that this book isn't a how-to. 

This is how we've dealt with it, and now everything's rainbows and unicorns. It's not that way. We still struggle with this every day. Maybe not every day, but we struggle with it. We just took TJ to his semi-annual visits, and there's this build-up in me. Whenever I start to get a little testy, or I start to get nervous, I need to journal more. I need to get a little more one-on-one time with my husband. We need to pray more together. We need to do stuff more. Now I know, after a decade, that I get a little testier with him. He knows, next week is the doctor's appointment, she's just stressed out. It took us a little while to figure that out. The fear's the hardest for me.

Amy J. Brown
I think you make a good point that we have to pay attention to not just our feelings but what's happening in our body, and try to name those emotions. We had a big mental health scare last week. I am currently not home and texted my husband this morning. I'm being completely honest here. I don't want to come home. I know what's facing me when I get home. A kid that has attachment disorder does not like their mom. They're not very nice to their mom. I told my husband at the top of the text: do not solve this; just have empathy. I had to type that in all caps. For me, Sara, it is when I see myself trying harder, I have to go, wait a minute, Amy, you've tried hard, and it's not gotten anywhere. You need to slow back down and name what you're feeling. It's okay to feel those things. It's okay to feel like I don't want to go home. I actually spent a few days with my oldest daughter, who's married. She actually likes me. She doesn't have attachment disorder. Going back to that, I'm not looking forward to it, to be honest, but I have to do it. Today I even wrote in my journal, what can I do to make it okay to go back? Instead of I'm gonna buck up, I'm a special needs mom. I've got a cape on. 

What do I need to do in my body to go back because I have to go back, obviously. I think naming that is so important. I hope that this book, as you read it, you see that we have all the emotions. We all come from different takes. It was really interesting when we wrote the book, we didn't read each other's chapters when we wrote them. I didn't know what you guys were writing about. God weaved them together in such a beautiful way. I want to end on a more positive note. The last part of our subtitle is the joy-filled life. We're still alive, and we still crack up, and life's not all dour. As you said, Sara, sometimes the message boards and things we read can be really negative. I think it's important to hold on to hope and joy. I think we miss the joy a lot of times in the drudgery. Sometimes it's always winter and never Christmas kind of feeling. I would love to hear where you guys are finding joy in your life right now.

Carrie M Holt
It is gonna sound like my son Toby has overcome all this stuff, but he hasn't. The joy of just being able to not be in the hospital. I went back and looked, and every calendar year since he had been born, he had had a hospital stay, except for 2022. We've already had one this year. It was minor, but we've had one this year, except for 2022. Because his body has been able to heal a little bit and not have brain surgery every couple of years, he's finally making just a little bit of academic progress. He has developmental delays. He has all of the diagnoses: dysgraphia and dyslexia,, and learning disabilities. It's been neat to see through some one-on-one tutoring through our homeschool program and different things. He recently wrote his own research paper on newborn care. He loves babies, and he wants to work in a hospital. When I read his paper, it wasn't necessarily a typical paper that someone his age would write, but it was amazing compared to where he's been in the last 16 years. That brings me a lot of joy. Also, to see how proud he is of what he's accomplished. That's probably the bigger thing is that he wants to share it with everybody, because he has the sense of accomplishment, hard work, and the time he's put into it. He's made some huge strides in taking a little bit more responsibility for himself for his academics. That's just been a beautiful thing to see, and he's able to do that right now because we're not in the hospital having surgery all the time.

Sara Clime
Yeah, that's good.

Amy J. Brown
What about you, Sara?

Sara Clime
Right now. 

Amy J. Brown
You paused.

Sara Clime
It's not going to sound uber-joy-filled at the beginning of it, but it is. TJ is getting ready to graduate high school, As a result of the nature of his diagnosis and the fact that he's not "disabled enough" for home health care, I don't have a lot of help. To have him home full time, and I have my own business other than this at home, it's a little stressful. We don't know what we'll expect here in a few weeks. That has become a quite stressful anticipation. I'm anticipating I'm trying not to be fearful. There's that fear emotion again. What's bringing me joy right now is I am learning to set that aside and not to anticipate that stress. My husband and I have been working at brainstorming ways to find time during the day, the evenings, and the weekend, where I can find time to myself. I'm introverted; I have to have time to myself, or I will lose my mind. I will take people around me down with me. If I'm going down, everybody's going down. To ease that anticipation of knowing I'm not going to have a lot of time. What are we going to do? Am I going to have enough time to care for him the way I am, or will I have to give up my business? Those what-ifs. 

Working that out with my husband and knowing that we're a team, we're going to try to figure that out ourselves,

Amy J. Brown
I love that. I love that so much. In one sentence, what do you want our readers to get from the book? If you hand this out and say here's what I want you to get from this book, what would you say? I can go first and say, I want our readers to know they are not alone, that that we get it, maybe connection.

Carrie M Holt
I was going to say that first, but since you used that one, I will say God can and will make something beautiful out of the hard places in our life. That does not mean that it's fixed or even that it looks pretty. There's beauty in wrestling through hard emotions. There's beauty and redemption, as Sara mentioned earlier, by drawing closer to Him with all the difficult things that we're going through. He will give us little pockets of joy from that.

Sara Clime
I would say that whatever emotions you're feeling are valid, and they're yours. God gave those to you. Don't be ashamed. As Carrie said, going back to change your perspective of it's not a shame story. It's a redemption story. Those emotions are valid.

Amy J. Brown
Thank you, guys, for sharing that and on launch day. We did it. Thank you, listeners, for going on this journey with us. If you haven't ordered the book, anyplace you can buy a book, you can get it. It's The Other Side of Special. We encourage you to order it and we'd love to hear what you think about it. What resonate? What you'd like to hear more of? Thank you so much for being on this journey with us. We did write this book for you. Carrie, could you pray us out?

Carrie M Holt
Dear Lord, thank you for today and the book that you have written through our lives and through our experiences. I ask right now that every person listening and those who will read the book will know that they are not alone. They will find connection. Provide a friend, provide someone for them that they can process, talk to, rely on, that can help them connect. It will encourage them that they will be willing to share their story with someone, be willing to be vulnerable, and to know as Sara said, their feelings are valid. Thank you that you meet us where we're at, no matter how messy it might look. I ask this book that you have brought forth because it's all been your amazing hand to do this, it wasn't us, it was you that it will encourage, uplift, and be a tool that many will be able to use and connect with. In Jesus's name, Amen.

Amy J. Brown
All of our resources, including the entire written transcript of this episode is available on our website www.takeheartspecialmoms.com. There are also links to anything we mentioned in the show notes of this episode.