Take Heart

Five Love Languages In Special Needs Families - An Interview With Joleen Philo

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 50

Share episode

Author, blogger, and special needs parent, Jolene Philo, joins us to share a little bit about her thoughts on God’s provision, connecting with others and how to discover your child’s love language. Don’t miss it.

July 27, 2021; Ep. 50

Timestamps & Key Topics:

  • 0:01-     August Announcement
  • 1:29-     Meet Jolene Philo
  • 2:51-     Jolene’s Story
  • 7:14-     Convincing Others
  • 10:30-   Giving Up Control
  • 13:07-   True Joy
  • 14:12-   Relax 
  • 17:15-   Let Them In
  • 22:07-   Observation
  • 26:01-   Finding Jolene
  • 29:20-   Outro

Episode Links & Resources:

If you enjoyed our podcast, please...

Support the show

Sara Clime  0:01  
We hope you've been enjoying the Take Heart Summer Interview Series. Thank you for listening and sharing it with others. We are taking your own advice regarding self care,  and we will be taking the month of August off. We will be back for Season Two which kicks off on Tuesday, September 7th. If you're not already an email subscriber, make sure to go to our website at www.takeheartspecialmom.com because we have some exciting things that will be released to our email community in Season Two.

Welcome to Take Heart, where our goal is to give you hope and offer insight and encouragement, so you can flourish in your journey as a special needs mom. Each week, Amy, Carrie, and Sara will explore a theme, sharing an inspiring story, practical tips and an encouraging blessing using our combined experience of over 30 years of parenting children with special needs.

Sara Clime 1:29
Hi everyone, it's Sara Clime, and our guest this week is Jolene Philo. Jolene grew up in a caregiving family and raised a son with medical special needs. During her 25 years as an educator, she created an inclusive classroom for children with disabilities. She's the author of several books about caregiving, special needs parenting and childhood PTSD, including Sharing Love Abundantly With Special Needs Families: The Five Love Languages For Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman. She is currently working on a cozy mystery series. Her award winning blog at www.differentdream.com provides encouragement and resources for caregiving families. Jolene and her husband live in central Iowa. 

Hi, Jolene. 

Jolene Philo  2:13  
Hi, Sara, nice to be with you. 

Sara Clime  2:16  
Oh, thank you so much for being here. This is going to be such a treat, guys. You are just going to love this. The first time I met Jolene was at a conference. We were starting a special needs ministry at our church, and she was the keynote speaker. It just was such a wealth of knowledge for me. I'm gonna let her share a lot of the things about all of the things that she has going on, which is just phenomenal. Jolene, tell us a little bit about yourself, your history, just all the things.

Jolene Philo  2:51 
Sure. I grew up in a small Iowa town called Blue Mars. It's best known as the home of Wells Blue Bunny ice cream. So if you've ever had Wells Blue Bunny ice cream, that's my hometown. My father was disabled the entire time I was growing up. He had multiple sclerosis, so we were a caregiving family. My two siblings, myself and my mom cared for dad in our home. When I graduated from college, I got married during college, my husband and I moved out to Northwestern South Dakota, 20 miles from Montana, or 20 miles from North Dakota and two miles from Montana, a very remote little town of 92 people. While we were out there, I taught country school. Our first child was born. He was born with a birth defect that was quite life threatening and required immediate life flight to Omaha where he had life saving surgery. By the time he was five, he'd had seven surgeries and hundreds of procedures, but he was doing very well. By the time he hit school, and we moved to central Iowa, kind of, when he was three, it was pretty hard to convince people that he'd had all these big issues because he did well. He did very well all through elementary school. When he started middle school, we started to see some behavior issues that concerned us, but it was quite a while. In fact, he was 26 when we finally received a diagnosis for him of post traumatic stress disorder caused by all of those early surgeries he had. I was a teacher for 25 years. I left teaching in 2003 and started writing and speaking and working for a church. What I found was what I had to say about raising a child with special needs, and being raised by a dad who had a disability really resonated with people. So my first book was a devotional called Different Dream For My Child. It is just devotionals for parents who are raising kids with special needs. I've had several other books published since then all for the caregiving community or special needs ministry. My most recent book that's out is Sharing Love, Abundantly in Special Needs Families. It's about using the five love languages in caregiving homes, and I co wrote that with Dr. Gary Chapman. Right now I am working on a fiction series. The first book in that series will be published next summer. It's a Cozy Mystery loosely based on the town we lived in, in South Dakota, and it has a number of characters integral to the community and to the plot who have disabilities and special needs. So that's me.

Sara Clime  5:43 
Oh, that's so exciting. I love all of that. The mystery, I cannot wait, that's going to be such a great read. The first book I ever read of yours was Different Dreams Devotional. Okay, listeners, I won her book at this conference, they pulled my name out. I don't win anything. I think it is exactly. You guys have heard me quote this book several times. I was so excited to win this book, and I went out and I asked if she would autograph it. I tell you, it made my whole weekend. So that was just a little, little side note. I think that there's going to be so many listeners, because that's going to really resonate with when you said that it was just hard to convince others about the diagnosis. Like my son at first, when he received his diagnosis, for all intents and purposes, he seemed "normal".  That's what people would tell me. Well, he looks normal. First of all, I would say, “He is normal.” It's hard to convince others when it's not that obvious. You didn't even have the diagnosis until 26. Could you just speak a little bit more on the difficulties? How did you overcome those difficulties when it was not just dealing with the issues that you have to deal with, but then you're trying to convince other people?

Jolene Philo  7:14  
You know, it's really hard to do that. You kind of, in many ways, just have to let time take care of it for you. Now, when our son was really young, and we lived in South Dakota, nobody had any trouble understanding that it was a big issue, because they saw us have to take him down. He had tubes. They saw us taking him to the doctor. They knew he was life flighted. They saw a feeding tube and all that kind of thing. So that wasn't so hard. When we moved though, and by then he was through most of the surgeries, I'm sure we seemed to a lot of people to be like hovering parents, but we knew his problem was with his esophagus. So, we knew if he ate too fast, he could choke or if this happened, this would be the result. He got bronchitis a lot when he was little because his bronchial tubes weren't fully developed. It took time. As he got older, and we started dealing with the mental health issues, that was when it was really hard to convince people because it started about middle school. As we kind of started loosening some of of the structure we had around him to let him start making decisions as kids need to do in middle school, and what we didn't realize was that with his trauma issues, that the idea of having to make his own decisions and not having people keeping him on track was very scary for him. He knew that he didn't feel safe, and his reactions maybe weren't going to be weren't going to be what they should be. Yet he had no way of communicating that to us because it was all this nonverbal trauma he was dealing with. Convincing other people that your child who gets straight A's and is the lead in every play, and on the Academic Team and National Honor Society, and the jazz band drummer, trying to convince them that there are issues is really hard. It really wasn't until he ran away for the first time after his junior year in high school, then we started to get people to pay attention. But still, it took eight years after that before we got a diagnosis, and that was in 2008. That was when PTSD in kids was just kind of starting to come into being better understood or whatever. Childhood developmental trauma was just starting to be a thing. We went through the early years of that as that understanding and awareness grew. It is hard. We just kind of had to say, Well, we know it's real. Then we really know it's real because you went through treatment and the treatment helped. That really is the proof that you've got the correct diagnosis.

Sara Clime  10:13  
Right, right, absolutely. So you have been in a special needs family as long as you can remember. How is one way that your faith has grown as a result of this journey?

Jolene Philo  10:31  
I think the big thing for me, and I don't think I really understood this until I was an adult myself, this part is that, I was not in control. When you have a child who's born and a few hours later life flighted away, all you can do is pray. That's all you can do. I came to understand that God was in control of our children. That illusion that a lot of parents have that they're in control of their children is quickly ripped away. That has led me to being more dependent, I think, in my faith. Realizing that there are some things I can do, and I am to do the things God provides me with the tools and the capabilities and the resources to do, but there's a lot of things that have to just be left with him. Then finally, I think what I really have come to understand from my childhood is that God does that. I can look back now over almost 65 years, and see that His provision was enough. It wasn't always what I wanted, wasn't what my family wanted, wasn't what we thought we needed, but it was exactly what we needed because all of those things have played into what was then a future that now I've lived through. I've seen why we had to do those other things first. Does that make sense?

Sara Clime  12:03  
Oh, absolutely. That makes perfect sense. I know one of the hardest things, especially when you're dealing with your child, is that loss of control. Like you said, I love how you said it's just the loss of illusion, it's not the loss of control, it's the loss of the illusion of control. You find that control back when you realize that that control is with Christ. When you are down on your knees, that's when you start to be able to recognize that control. That's wonderful. So there's so many things about being a special needs mom and special needs dad, that we're just a caregiver. The trials are endless, and almost daily, and it's exhausting. It's just so upsetting. One of the things that I love to ask people is, what is one thing about your child in this journey that has brought you so much joy? Maybe it's hard to narrow it down to one thing, but what can you tell us about that true joy of being a special needs mom?

Jolene Philo  13:07  
I think for me, it was, and it continues to be even though my son is almost 40, and I don't know when that happened. Watching my son grow, and change and learn. I know that's different for different parents, because our kids all have different capacities. Every child, as a teacher I know this, every child can learn and every child learns at their own pace. So just watching what my son's pace would be, what excited him, what he loved to learn about, what didn't matter to him. Now seeing that carry on into his adulthood has just been a delight. I think some of that is maybe because I was a teacher, and I've always loved to see kids grow and learn.

Sara Clime  13:58  
Yeah, yeah, I could see that. If you could go back and give yourself any advice when he was younger, would you go back and give yourself advice? What would that be?

Jolene Philo  14:12  
It would be to relax, not get so caught up. We had lots of crises and lots of times where they were life threatening crisis. We needed to get to the doctor, now, and more life flights and more surgeries. A year of having to breastfeed him because he was using a feeding tube, I had to pump for an entire year because he was allergic to anything but breast milk. I would still go back and tell myself, just relax. You just do what God calls you to do, and trust him with the rest even if that means that you're only going to have your child a few months, or a few years, just relax and enjoy the time you have.

Sara Clime  15:07  
I love that, and thank you for saying that. One of the things I always joke around with my husband with is my favorite scriptures is Psalm 48:16. It's, "Be still and know that I am God." I often hear God in my own mind saying, chill out, not really be still, but it's like Sara, just chill out a little bit. Like you said that no matter how long you're going to have them. My son's diagnosis is terminal, and one of the things that I realized is I could be upset for the duration of his life, or I could just enjoy what I could enjoy. No, I'm not going to enjoy every moment. Like you said earlier, you're not going to understand everything. It's not going to be fair, it's not going to seem fair. I can say now, a decade into this diagnosis, that I can look back and say, I did not know that at that time, but that person at that hotel, where we're staying during this whole infusion thing, that was something God provided for me. He sent that person to help me. Again, I just love how you said, "Just relax." I think any time we ask this question, I would say nine out of ten times, we always hear parents say, I would just tell myself to relax a little bit. 

Jolene Philo  16:26  
That's funny. 

Sara Clime  16:27  
One of the things that we talk about on our show, especially here is connection. It's so hard to connect with others. It's hard to connect...it can be difficult to connect with your spouse, your child with friends, even with yourself and self care. Then it can also be hard to connect with God when you have all of these feelings. I would just love to hear, and I know this is such a broad topic. I would love to hear your take on this, going into your book as well. I don't want to direct your comments, but the whole connection as a whole. What would you tell our listeners about that? How could you? What are some of the advice that you could give us on connection? 

Jolene Philo  17:15  
Sure. I guess my first advice would be, you need to let people in. Even though you don't think you have time, and even though they're going to ask you questions you've answered 20 times before. Even though you'd rather talk about something else, you need to let them in and tell them what your life is like. Because even though you're gonna have to tell that 20 times five of those 20 people might be willing to walk alongside you and make a difference. Those people that do that are just treasures, and they are worth the work of the 15 that don't come alongside you. They will be...I'm going to get all weepy about this. They will be lifelong friends. When our son was little, we were out in that little town, 92 people in South Dakota, and a lot of ranches outside town. That community took our son under their wing and our family. They just brought us meals, and they weeded our garden, and they froze our produce. They cleaned our house. We didn't ask for those things. I was still teaching. At the drop of a hat if I needed a substitute one of the mothers would come in and teach the class. So many of those people, we haven't lived there now for 37 years, are still friends. I just received a graduation announcement for the son of one of my former students, I call them my grand students. My husband is retiring this summer, so for the first time in a long time, we're going to be able to go out there and really spend like a week. I've gone out a few times, my husband hasn't been able to as much. We're going to go out and just spend a week there seeing those people because they are dear to us. We know that if we would ever email them, or text, or write them a letter, and tell them that we have a need, they would be there for us, praying for us and caring for us. Those connections are so important, because you can't expect your family to do it all, your immediate family. I know my mother expected my brother, sister, and myself to do it all. We had one aunt and uncle in town, who she would call upon. They are, I mean, they are as close as parents to us, but other than that, if people ask what she needed, she would say, well, we're fine, and we weren't fine. You've got to let people in, so that you have a big group of people to support you when you need support. You need to let them know what's going on, so they understand when you fall apart, or when something terrible happens, they're there.

Sara Clime  20:33  
Yeah, that's great. Thank you. It's one of those stories that always comes to mind, whenever we're talking about connecting, our podcast, the co host, Amy, she talks about how she had a friend that said, "I didn't know how to help you, because you didn't tell me." That's always just stuck with me. People aren't going to know how to help you. They're not going to know how to walk beside you if you don't let them in. Like you said, you cannot expect family to do everything. I am very fortunate I have a mom, a mother in law, my sister, there's so much family there that's willing to help me, but it's still so nice to have somebody outside of the family come and walk beside you. So thank you for that. In the book, you also talk about how to connect with children that you might have a difficult time determining what those love languages are. Not all of our children,  my son is verbal, he can tell me what he wants. It doesn't always make sense. Sometimes we just have to just accept the fact that we might not understand exactly what he's trying to say, but there are so many families with nonverbal children. One part of the book you were talking about how to determine the child's love language.  Can you speak more on, if you're having a difficult time determining those love languages, how to determine that? How do you go about trying to figure that out?

Jolene Philo  22:07  
Yeah, that's a really good question. I think the key there is observation. You have to really take the time to watch your child and see what makes them light up. So one of Dr. Chapman's methods that he uses with younger children and and before I go into it, I should mention, if your child's developmental level is between the ages of birth and age five, whatever their chronological age is, just use all the love languages with them because when children are that young, developmentally or chronologically, they need all the love languages. They're all important to growth and development. If you never can figure out your child's love language, just use all five with them. Even if they have a higher developmental level than that, at least 20% of the time, you're going to get it. If you only use one of them, and it's not theirs, you're never going to get theirs, so just use them liberally, all of them. As you do that, even take maybe a week, and just use gifts, giving and receiving gifts with your child, and see how your child responds, even keep notes on how they respond. Then try acts of service, words of affirmation, physical touch, and quality time. Try each of them for a week or two. Keep those notes and observations, and you're probably going to discover that one of them really makes your child light up. They seem to enjoy it more. It means more to them, they do it for longer. It's kind of like when you give a child five toys for Christmas, there's one that they're still playing with two months later. It's kind of like that with the love languages, you give them all five, but there's one that they just keep coming back for more and seem to want more. Then if you still aren't sure, ask yourself these three questions. What calms my child? Which one of these when I use it with them calms them? Which one motivates my child, so it makes them eager to maybe change a behavior or do something with you? It's one thing they want to engage in. Then, where does the child choose to spend time? Does your child like to go to the store with you? If you pick up gifts to give other people that really lights them up, or do they prefer to have you sit with them and read a story or help them make their bed? Whatever it might be, you've probably found the one that is their primary love language. That's my best advice, and a lot of it came from parents of kids who were nonverbal or have a lot of communication difficulties.

Sara Clime  24:54  
I know that in your book, you have... Listeners, just so you know, there are stories and examples and scenarios that are just sprinkled throughout this whole book. It's really going to help. One of the things, Jolene, that I really liked, and I so appreciated this is the generosity that you had at the back of the book with all of the resources. All of the resources you talked about, you have links to everything, you have websites, and I mean, it's just such a wealth of information. I think that that is just so key to trying to figure out where your family lies, where your family thrives. It's gonna be trial and error sometimes. So, I just love that about this book. Speaking of this book, and you have other books, you have a blog. Tell us more about where we could find you, how we can support you.

Jolene Philo  26:01  
Sure. Thank you for asking that question. Every author loves to hear that question. I have a blog. It's called www.differentdream.com. It's been up and running for, I don't know, 11 or 12 years now. It has a lot of things that I've written. It also has a lot of things from guest bloggers, who are all parents of kids with special needs, or work somehow within the special needs disability community. There's my blog there. Also, I'm on Facebook, I have a Facebook author page called A Different Dream For My Child. I'm also there on my personal page of Jolene Phil, so you can find me at either of those. It'd be great to have you like the page, or join it, and leave comments. I'm also on Twitter at @jolenephilo. That's not very creative. When you have a name like Jolene Philo, you don't need much else. That domain name is never taken. Recently, I've started an Instagram page, and it deals more with my fiction work. That's the one that I really could use some help getting the word out. My Instagram handle is @downthegravelrd, not r-o-a-d, but just rd. That has more things about my life, what I'm writing, what it's like to be a writer, what it's like to live in a family where my daughter and her husband and their two kids also live with us. What it's like to live in a multi generational family, and then also on Facebook, I have a group related to my fiction work. It's also called down the gravel road. You can ask to join and I'll be glad to have anybody join.

Sara Clime  27:50  
Great. That is so exciting. I'm really looking forward to the fiction writing. That's one of my best getaways whenever I just need to decompress a good book is always exactly how I choose to do that. Listeners, we're going to have links to the show notes in the show notes to all of this will have links to all of her social media platforms, the blog, and the books themselves. We are so grateful that you are here. Thank you for taking the time with us. It has just been a true joy.

Jolene Philo  28:23  
Well, thank you so much for having me, Sara. It was great to connect with you actually in person, and now I remember meeting you at the conference. It's always good to see a face again and like oh yeah, everything connected. The older I get, the harder it gets. My brain is very crowded.

Sara Clime  28:43  
Well. It's easy to remember, "Oh, the really excited one, the one that was a little bit too excited." Thank you so much. It's been a true joy. 

Jolene Philo  28:59  
That's not what I was thinking. 

Sara Clime  29:03  
Well I appreciate it. 

Jolene Philo  29:04  
It's been great to be with you. Thanks so much.

Sara Clime  29:20  
Thank you for joining us this week on Take Heart. If you are loving our podcast, would you do us a favor and leave a review on whatever platform you're using? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments or would like to share your story with us, follow the links in our show notes we love hearing from our listeners. Just a reminder that we are taking the month of August off, and we will be back on Tuesday, September 7.