Episode 49: Supporting the Whole Family with Kathy Derr

DJ Stutz  0:13  
Just letting you know, the following Podcast is a production of Little Hearts Academy USA. You're listening to Episode 49 of Imperfect Heroes, Insights Into Parenting, the perfect podcast for imperfect parents looking to find joy in their experience of raising children in an imperfect world. I'm your host, DJ Stutz. And Kathy Derr is the proud mom to five kids and grandma to four, her oldest son, Christopher had an inoperable brain tumor. And she passed away when he was just a kid. And while he was fighting the cancer, she learned all too well, what family life is like for a family with a child that has a life threatening condition. And so back in 1995, she helped start A Kid Again. And they serve families that have Down syndrome, or a life threatening condition by providing free year round adventures for the entire immediate family. And there's so much to learn. So let's get started.

We often talk about addressing the whole child in education. And in parenting, this means not just looking at one aspect of a child or their abilities, or the lack thereof. But looking at the whole picture of that child, what is going on? Are their vision problems, hearing problems? Have there been changes in their life? Are they getting enough sleep, the angles are actually endless. But when we are able to take into consideration more pieces to the puzzle, we are better able to help and teach. And what I love about Kathy Derr and A Kid Again, is that they addressed the whole family, the parents, the child and the siblings, like people, families are individual, and they have their own dynamics, their own strengths and their own weaknesses. And when families are under the stress of an ill child, the whole family feels the stress. Some siblings may act out, while others may feel the need to be strong and never complain or to not let on that they have needs that are not being met. Kathy Derr understands that when offering respite and escape, it's important to offer that to everyone. Kathy has resources to help families not only find fun and entertainment, but to connect and build relationships within the family and find other families in similar situations that you can build relationships with as well. Listen in, and you'll see what I mean. 

Well, I'm glad to have everyone here. I am joined today with Kathy Derr. She is the head not the head, but director of new families in new markets, new families in new markets with a kid again. So Kathy, why don't you tell us a little bit about what that is? 

Kathy Derr  3:25  
Sure, I'm be glad to. So A Kid Again is not for profit. We serve families that have a child with Down syndrome, or a life threatening condition. Tons of diagnosis is out there that we serve, we serve them till the child turns 20 years of age. So from birth up to age 20. And what we do is adventures cost free, year round, fun filled adventures for the entire immediate family. And adventure might be a trip to a theme park, a sporting event, a zoo, a holiday party, the list goes on and on. Because of the wide range of adventures that we do and the ages that we serve. We also do our adventure in a box, which one of the good things that came out of COVID that we started and adventures in a box is done quarterly and it is mailed to the families that want to participate in it. And it's a wonderful way to be able to touch the lives of the families that are living in areas that we don't currently serve yet or that are unable to make it out to an adventure.

DJ Stutz  4:37  
And I love this whole adventure in a box idea. I was so intrigued when I heard about it. Maybe tell us a little more. This is something that's sent out monthly. We do it quarterly quarterly

Kathy Derr  4:52  
and it's wonderful because I mean the push is on for us right now to take our organization nationally and it It's a great way to get families from all over the country to sign up for a kid again. And then quarterly, they can take part in our adventures in a box. We did one about. Well, it was the first quarter of the first quarter when we did a Friday Night Magic. So all the kids received a personalized box of magic tricks. And then a dear friend of ours, Jon Petz, who has done magic shows for us for years went online taught them how to do the tricks that were in their box. And then they could turn around and put on a show for their friends and their families. The next one we have coming up is going to be a spy, they're all going to get their little secret agent tags with their special names and have all these clues that they have to solve to see what kind of secret agents they can be. And then we have a couple more planned for the year, we're going to do a Lego box. So all the kids will receive a box with special Lego pieces in it. And then again, go online. And we have a master builder here in Columbus, Ohio, who's going to show them how to put different pieces together to build different things.

DJ Stutz  6:11  
That is so awesome. That anxiety. And this is for the whole family, not just this graphic child,

Kathy Derr  6:19  
the Yeah, that more is more than the child that's diagnosed, we recognize the sacrifices that siblings make most of the time unintentionally. But a lot of the times the siblings are kind of pushed to the side because the child that's diagnosed has to be taken care of. So we recognize the sacrifices that they're making. And we include them in everything that we do. When you come to an adventure, you don't know, for the most part, which one's a sibling in which one's the child that's diagnosed, because we treat them all the same.

DJ Stutz  6:52  
That's wonderful. That's really wonderful. I did an episode, gosh, probably six, seven months ago, on raising a child with disabilities. And the mom that I talked to, was pregnant with her sixth child. And it was her oldest child that is very significantly involved with cerebral palsy. And we talked about what you were just saying how the sacrifice that some of these other kids are making, and especially her two oldest girls, right? So they were having to help even at a young age, just out of necessity, putting the boys to bed or helping them get dressed in the morning, or there's just a lot of added things that they had to take on so that mom could take care of their oldest daughter who was so involved. And it really hit home, how it affects the siblings.

Kathy Derr  7:54  
Right, if you think about it, and I think our family is very typical of a lot of the families that we serve, we had five children, our oldest son Christopher, had an inoperable brain tumor, he was diagnosed at age seven. So typical family, I wasn't working so that I could take care of him. I had to have my parents and my siblings, I didn't have to they offered and were wonderful about it. They watched the other kids while I took Christopher to radiation twice a day into his chemo and all the doctor's appointments so my husband could keep working. But when you're down to one income, and you're used to two, that means the siblings can't take their piano or dance lessons or whatever, let alone have the time to do it. So yes, siblings are really heroes in the families that are suffering like this.

DJ Stutz  8:51  
Yeah, they really are. And it's so important to help them feel valued and important and to have their own one on one time with mom and or dad and right so that they don't grow up feeling resented or undervalued or whatever.

Kathy Derr  9:11  
One of the things we do to hit a kid again, is, of course, many times the diagnosed child is too ill to come to an adventure, whether they're in the hospital for treatment, or their counts are too low, they can't come or we no matter what the reason, the siblings are still able to attend the event and have their special time even if the diagnosed child can't come.

DJ Stutz  9:36  
What a blessing that is. That's, that's amazing. I'm so glad that you thought that through so far down the road. We talk about how some of the kids are so really involved, and they may be fragile in so many different ways. It just depends on what they're dealing with and how significant that is. And so what kind of guidelines do you have? How do you identify which kids can qualify for your program,

Kathy Derr  10:06  
the severity of their diagnosis does not limit them from doing things with us we take all across the board, we have kids that are dependent on vents, and all sorts of machines and everything. And they're in full body chairs, and all sorts of things. And they come to our adventures, just like the child that you wouldn't even recognize as having a life threatening condition at all. So we try to be very aware, when we're making an adventure, that many of the kids are in chairs, or do have multiple and very severe diagnosis, and try to plan as best as possible to to handle those.

DJ Stutz  10:51  
Yeah, that's me. So how much travel is involved with these adventures?

Kathy Derr  10:56  
For the families, we do everything close to their home, that's what we're trying to do now is set up new chapters in some of the different states, so that families in well, Minnesota and Wisconsin are one of the areas we're working in now. We don't want them having to travel to Indiana, to Indianapolis or to Ohio. So we are setting up new chapters in all the different states so that they can go to things closer to their home.

DJ Stutz  11:28  
So the adventures may vary from region to region, depending on what's available. gret

Kathy Derr  11:36  
correct that and yet what kind of partnerships we can make in the different areas, whether it be financial or an in kind, a lot of the hockey teams will give us tickets and parking and food, we like to we like to do a full experience when we do an adventure so that there is no cost to the families. They just have to be able to get there. But we're going to take care of parking at Mission food. And we like to give them some kind of momento to take home to keep continue to remember that the adventure the next day.

DJ Stutz  12:11  
That's pretty cool. And so it's what you do. Is it strictly about adventures? Or is there any education or respite or what other things,

Kathy Derr  12:24  
the events that the adventures we do our group events, so that it's all the families coming together, and one of the reasons we like to do a meal is so that a meal is very personal. And you think of a family sitting around the table, that's an important time in the day. And the same goes no matter how big that family is. And for some of our events, it's a couple 1000 people, that it's a chance for them to sit down with other families going through the exact same thing, and feel the support and get the support from other people, it's a great chance for them to see people that they see at clinic or in the hospital outside of that setting. And they sit down and start talking. It's also a chance for him to meet new people who they can talk to to say, hey, you know, my son's going through this now, did your daughter have that? And yeah, yeah, you know, try this therapist or this doctor or something like that. It's a huge support system for each other.

DJ Stutz  13:29  
I love it. And I kind of envision with, as I'm listening to this, you explain all of these great things, I kind of envision, maybe there's a 12 year old girl that's having to pick up a lot with the family. And maybe they find another 12 year old girl that lives close by and is having to deal with a lot of that same picking up the slack, right. And so maybe they can connect to and find a way to share their stories with someone who understands who's that age.

Kathy Derr  14:06  
And we've had a lot of those families where the siblings have connected with each other, then they look for each other at the next adventure. They exchanged emails or phone numbers and stay in contact. One of the nice things that we have also our private, Facebook family pages for the different chapters, so that all the Michigan families can talk to each other and all the Ohio families can talk to each other, and that type of thing. And it's a private page. So if you're not a family member, you're not going to get into that private page.

DJ Stutz  14:41  
That's so important to keep that a private page so that you don't have anyone from the outside, right? Do Looney Tunes or even targeting them for advertising or marketing. We don't want any of that going on with these families in this setting.

Kathy Derr  14:58  
No and we're very be protective of that. This is not a chance for a company to sell their, whatever they're selling to our families. If, if you want to sponsor an adventure, that's perfectly fine. And we will let the family know that you're doing it. But we protect that family from being sold a lot of things that they already know about.

DJ Stutz  15:23  
Exactly. So if a family is listening into this podcast, and maybe they have a child, or maybe they know of a friend or another family member that's in dealing with the same kind of issues, what would you suggest they do?

Kathy Derr  15:43  
Go on our website, www Edie ket again.org. backward slash, enroll now. And sign up, have the family sign up. Any family across the country is more than welcome to join us. And we would love to get them involved so we can start serving them.

DJ Stutz  16:02  
And even if you don't have a child, that is there, I'm sure that there are volunteer opportunities, or maybe working to get a chapter started right in your area, so that you can serve, maybe you've got a friend who's got a child or you've got a nephew or a niece. So it wouldn't affect your own direct family. But you still have the heart for that. And this is a great way to find a way to help out.

Kathy Derr  16:35  
Right? So we're always looking for more volunteers, of course, sponsors, different companies that would like to help out. And anybody, as you said, you never know who knows somebody else who has a child that qualifies. And where our next chapter is going to be is pretty heavily driven by the amount of families we have enrolled in that area. Okay. So we're constantly looking at the map and who's enrolled where, and we have quite a few families out in California right now. And there's a lot down in Florida. So those are two of the areas we're looking heavily at, or possibly one of the next chapters. And so the more families we get, the faster we can get a chapter in real adventures up in that area.

DJ Stutz  17:23  
So is it mostly word of mouth or how old you are getting the word out?

Kathy Derr  17:28  
Yeah, word of mouth, enrolled families are doing a lot to help us get other families enrolled. We are reaching out to other organizations that serve families that have one of the diagnosis is that qualify for our program, reaching out to hospitals, social workers, child life specialists, nurses, extended care facilities that serve pediatrics, some companies that provide the medical equipment for the different diagnosis for the families, just anybody and everybody that we can talk to we will about the organization.

DJ Stutz  18:06  
I think that's a great idea. Because I'm sure you need some medical support there at these events, do you?

Kathy Derr  18:14  
Sometimes yes. And sometimes we'd like to invite the other organizations that are helping us to come to some of the events, some of the the nurses or social workers or child life specialists from the hospitals. It's nice for them to be able to see their kids outside of the hospital setting. Yeah, we reach out to schools, of course,

DJ Stutz  18:35  
just Yeah. And so you say it's from like, birth to 20. So I have a friend, it's a family actually, that I work with when my coaching business and my parent coaching. And they have four kids, and the third one has a terminal heart condition. And when he was born, they told him and I wound up being the teacher to offer the kids to and now they're part of my coaching program. But they were told originally that he would not live to be five years old. He had about a five year lifetime expectation. And just with that positive reinforcement, I guess, and good medical when whatever. He's finishing third grade.

Kathy Derr  19:21  
Good for him. Yes. I love it when they prove doctors wrong. Oh,

DJ Stutz  19:27  
yes, they do. And the hysterical thing is and part of why they're in my coaching program is when they thought he was only going to live to five. They wanted those five years to be super happy and wonderful. So no boundaries. He could do whatever he wanted. And and now he's a handful.

He was good for I mean, because I just have them kindergarten and, and I had already had his older sisters. And so the family knew me well enough that I could just say, no, no, we're not doing that. But in his later years, it was like, Oh, my holy cow, right? And so, do you ever have stories like that where families are told this is the expectation? And these kids and their resilience goes so far beyond that?

Kathy Derr  20:33  
You know, yes. And again, what's one of the nice things is, our adventures are a safe place for families to bring, say, their severely autistic child who acts out or children that are very sensitive to sensory lights and sounds and everything. There are other kids there that are going to be acting out. And, and you don't have people staring at you. Because Because everybody's used, they're

DJ Stutz  21:05  
all looking at that kid and saying, yep, yep, we get that too. Just will pray for you. We love you. We're not judging you. You're doing fine mama and dad. And yeah, yeah. Because I think they really would. I have a son that severely ADHD. And he was an adventurer. He's still in a. But he's a cop now. And that's a job for a blessing. Oh, yeah. He loves it. And he he's, I mean, he's just shining in that atmosphere. It's what he needed. But I remember getting calls and he's not fitting in, or there were teachers who really resented and didn't understand the diagnosis. And then, once in a while, we would get a teacher that totally got him. And he would shine. You know, there, he went from a remedial math class. That was yeah, it was sixth grade. He went from a remedial math class and a teacher who just hated him. I was the PTA president at the time. No, you're families are I'm just saying that. I went to the principal, my good friend. And I told her what was going on? And she's like, Yeah, we've been trying to get rid of that guy for a while. She says, the only other class though, where I have room for him, is in an honors math class. And I said, Well, he's going to fail that or he's going to fail it here. Yeah, so let's do it. This math teacher got him so well, that he wound up with the highest grade in the class. And in fact, it was so high, he didn't even have to take the final because even if he failed, and he still had an A. And so that got him on a whole different track. And I think sometimes when you're going to maybe even a group like this with people who get it, you know, yeah, opens all kinds of doors for their own self esteem.

Kathy Derr  23:26  
And it's hard. When you're so surrounded by a lot of these the problems that you're facing when you have a child with a life threatening diagnosis, it's hard to get out of that moment. And to realize that the child is they are going to be okay. And there's more out there than this horrible. Five minutes it's going on right now. A horrible math teachers that they might have, you know, it usually turns out, okay, and again, at our adventures, that's one of the things that parents can sit down with other parents that are going through the same thing and realize that there is support, there is hope. And, yeah, well,

DJ Stutz  24:14  
and they can share resources. Exactly. You know, one of the things that happened for me was I was able to find a parent advocate within the school district. And that was because of a connection with another parent who had gone through some things and they said, You need to call this lady and she's an advocate, because I was had struggling with getting his needs met. Right. And it was funny, man, the day I showed up with her everyone was like Johnny on the spot, and oh, yes, Mrs. Stutz. What else do we need to do for him? You know, but I think it's that networking that can take place in something like this. And especially because it's local. Yeah. They're gonna have the local resources. Right?

Kathy Derr  25:03  
Right. You don't have to go through this alone. And it's important not to, it's important, if for no other reason to be able to vent, and to talk to someone, and just to get it out, and it doesn't have to be a professional therapist or anything like that, really just get with someone and be able to talk and someone that understands what you're going through.

DJ Stutz  25:30  
Not to say anything against therapists, I have no one, but

Kathy Derr  25:36  
totally appreciate what they do.

DJ Stutz  25:38  
Absolutely, absolutely. But sometimes just having the air of someone who understands on that very personal basis.

Kathy Derr  25:51  
And it's different from talking to a professional and talking to someone who's going through it.

DJ Stutz  25:56  
Yes. Yeah. Someone who's kind of just on the other side of it.

Kathy Derr  26:00  
Right. Right, exactly. And that's one of the things, a lot of times we'll have parents come and say, I appreciate what you did, but my child is, is say, has cancer and has been cured. And so we don't need to come and we say, please do come because you are the hope that other parents see, they see hope in you. And it's important for you to come to be assembled to them.

DJ Stutz  26:25  
Yeah. And so that is so about plus, it's fun. Right? Yeah. So you're going and you're doing a fun thing. And then you're able to be that light at the end of the tunnel for some of these right families? Or if even if God forbid, they've lost their child, right? Well, we know where they are. They're not lost, but they've moved on to whatever they're doing. Right? And to be able to be there and have that voice of I went through it. And I'm standing here breathing, right? Because sometimes I think it hurts so much. You think how can I take another breath and not die.

Kathy Derr  27:06  
And again, only another parent who has lost a child truly understands what it is? Yeah, you make a person may think they do. But unless you've lost a child, you really don't, you really don't. So one of the things that we do it a kid again, is if God forbid, a family does have their child pass, we say earn their angel wings, the family is still in the program, we'll keep them in the program for three or four years until most of the time, they will opt out. But they are still welcome. So that because the other families are their support system, we used to not include them anymore. And it's like, okay, you've lost your child and your support system. That doesn't make sense. So we keep them in the program. So they can continue to come and have that, that support.

DJ Stutz  28:01  
That's so important. And again, when you're looking at even the little kids that are not there, the siblings, and sometimes it's the littlest ones, so you had a child, and then whatever time later, you have a typical child. And I remember so I used to be the Administrative Director of an international support group for trisomy. So it was Trisomy 18, trisomy 13. So for any of my listeners who don't know what that is, it's super significant. It's a genetic disorder, with the genes in the genomes in your DNA. And some of these, I mean, most of these kids only 10% believe in, make it to birth. Yeah, and only 10% of those who are born alive will make it to their first birthday, super involved. But it was really interesting to me that I would have parents who then had another child, and it was a typical child. And they would say, you know, I thought when Susie my Trisomy child did things, we always thought it was the Trisomy Oh, it's this. So it's that and then to have this other healthy child doing the same thing. To do normal things, like they get to participate in life in a healthy, typical manner.

Kathy Derr  29:26  
Right? And, you know, there's all sorts of normals out there. What's a normal life for me is not the same as a normal life for you and what's what a child one child is like, is not what another child is like, even in the healthiest of kids, right?

DJ Stutz  29:46  
Yeah. So and even within the same family, so I've got five as well. And five very different personalities, five different ways to make me crazy, right. And but it's Amazing how sometimes when our kids are really that sick, we tend to think everything is connected to that illness, or whatever it is the genetic issues or whatever's going on. And so it's really good for us to have a chance to see that they all of them will do typical things in one way or another. And that will come through and to celebrate that it's such a joyful time.

Kathy Derr  30:32  
Oh, absolutely. Yeah.

DJ Stutz  30:36  
Yeah, he raspberries me with a mouthful of applesauce. I've had all five kids. Well, not all five, our youngest we adopted when she was 12. But the other four, she likes to say she was 12 years overdue. But that, but that is something that kids do growing up, you know? Absolutely. And to be able to celebrate that and to share those milestones. And I see things like your organization, really enabling families to come to those exciting and inspiring conclusions as they move along with their lives.

Kathy Derr  31:20  
Yeah, come celebrate life.

DJ Stutz  31:23  
Absolutely. I agree. Yeah. So Kathy, how would anybody get a hold of you?

Kathy Derr  31:32  
Our office number is 614-797-9500. Or the easiest way is probably my email, which is kderr@akidagain.org. And of course, you can always go on our website.

DJ Stutz  31:53  
And that's just akidagain.org?

Kathy Derr  31:56  
Yes, yes. Oh, we also have a Facebook page that, of course, you can always message us on.

DJ Stutz  32:02  
Awesome. And so we're gonna have all of that information in our show notes. So if you didn't happen to have a pen and paper handy while you were listening to this, we'll have that just down in the show notes. And you can go get that. So Kathy, as we've been talking, I always ask my guests the same question at the end of our conversation. And that is, how would you describe a successful parent?

Kathy Derr  32:33  
There are so many different answers.

DJ Stutz  32:35  
I'm finding that out actually.

Unknown Speaker  32:40  
I think, well, my children are all adults now. And I think the fact that they still call me all the time, and they are over every week for dinner, and I get to still be a huge part of their life says that I did something right along the way.

DJ Stutz  33:01  
I think I agree.

Unknown Speaker  33:02  
Yeah, I think just staying active being a parent and not their friend but being a parent, but it's very important.

DJ Stutz  33:12  
Yeah. And that's a whole nother episode. Yeah. Not a friend. Yeah, there's that. Yeah. I I totally agree with you. That you've done. Well, you've done well. It's kind of hard when I have five kids in five different states. So I don't get to have them over every weekend. But yeah,

Unknown Speaker  33:39  
yeah, we're very lucky. The four are here, of course, Christopher's with us all the time. But yeah, we're very blessed.

DJ Stutz  33:48  
I'm so glad. Well, Kathy daughter. I'm very excited. I'm so honored that you took time to be with us and help our listeners understand a little more.

Unknown Speaker  34:00  
Well, thank you so much. Thanks for having me. It's always nice to talk with you and your listeners.

DJ Stutz  34:08  
Well, thank you so much. And I'm sure we'll talk again.

Kathy Derr  34:14  
Sounds great. Thank you.

DJ Stutz  34:16  
You're welcome. Bye bye. One of the things I love about A Kid Again is that even if you don't live in an area that they currently serve, they will send you a quarterly activity that you can do at home, and then they connect through the internet. And if you or someone you know could benefit from this program, check them out. All the information is in the show notes below. And I know I keep asking and I'm gonna keep asking. But while you're looking over the show notes, go ahead and leave us a rating and a review and then follow the podcast, taking the time to give the podcast a five star rating and review and it really does only take about a minute, makes the podcast easier. Finding we are then able to help more families. And when you follow, we get a better idea of how many people are actually listening. Right now, the only data that we can get are how many people are downloading. And I know most of you are streaming. So if you follow us, that just helps us know if we're hitting the right notes. Or if we need to reach out a little more. So I want to remind you that the amazing summer workshop is still available through July, but you don't want to wait their activities for the whole summer. And you don't want to wait too long to make the goals that will make a difference in your family. So go to www.LittleHeartsAcademyUSA and you can register and have access to the workshop, as well as all of the resources that we have available for you. And when you go through this workshop and use the resources, you're going to be able to help your child build curiosity throughout the summer, you're going to help your child build social skills throughout the summer, you're going to be able to travel with them a little more easily and make it enjoyable not only for the child and yourself, but the people around you while you're traveling. There's so many things for you to learn and grow with. And so I hope that you will check that out. And of course, the link is going to be in the show notes. And I want to make sure that everyone is getting the news that I have a new Facebook page just for the podcast. So you can find me now at Imperfect Heroes podcast on Facebook. And my Tuesday night live events that I usually do on the Little Hearts Academy website are moving to the Imperfect Heroes Podcast, because those lives are generally about the same topics that we have going on for that week's podcast episode. But this is a chance for you to ask questions, to share ideas, maybe some things that worked or that didn't work. And to build a community that's going to really make a difference in other people's lives. The Tuesday night live events start at 7pm Mountain Time. And so you can of course go on and check if you're busy. You can always go on and watch the replay. Or we're now posting them on our YouTube channel. So you can always go to YouTube, and it's Little Hearts Academy so you can find us there. So coming up next week, Bailey Olsen is back. And we're going to discuss how to build curiosity and your children and find your own curiosity along the way. So tune in and see what I mean. And until next time, let's find joy in parenting.

Transcribed by https://otter.ai