Practical Tips For Finding Rest For the Special Needs Mom - Part 2

This collaborative episode wraps up part two with sharing some practical tips for self-care. This includes some advice on planning and protecting the time, and how important it is to ask for help. Most importantly is the idea that we cannot wait for life to be calm to take care of yourself.

March 30, 2021 

Timestamps & Key Topics:

• 0:20-    Intro
• 1:12-    Don’t Wait on Self-Care
• 9:49-    Practical Tips
• 16:50-  Advice for Varying Parenting Stages
• 23:21-  Ask for Help
• 28:44-  Setting an Example
• 30:32-  Closing Prayer

Episode Links & Resources

• Choosing Rest by Sally Breedlove
• Permission Slip
• 7 Steps to Help you Breathe
• Calming Activities to Help with Intensity by Colleen Kessler
• Meagan Chaney’s article on PTSD and Special Needs Parents
• At Home in Mitford by Jan Karon

If you enjoyed our podcast, please...

• Subscribe to our newsletter on the Take Heart Website
• Get our free resource on finding Gratitude, Peace, and Hope
• Review and like us on Apple Podcasts 
• Share us with others from wherever you listen to podcasts
• Follow us on Instagram @takeheartspecialmoms
• Find Amy at www.amyjbrown.com/  or on Instagram @amyjbrown_writer
• Find Carrie at www.carriemholt.com or on Instagram @carriemholt
• Find Sara at www.saraclime.com or on Instagram @saraclime

Transcript

Copy Transcript Copied

Carrie (0:20) Welcome to Take Heart where our goal is to give you hope, offer insight and encouragement so you can flourish in your journey as a special needs mom. Each week Sara, Amy, and Carrie will explore a theme, share inspiring stories, practical tips, encouragement for you to use every day. Thank you so much for being here today. This is the last Tuesday in March, and there’s still time for you to join us for the Self-care Challenge for the Special Needs Mom. All you need to do is snap a photo that shows a way that you are caring for yourself, whether it's for your mind, body, or soul. Label it with the #takeheartselfcare and tag us @takeheartspecialmoms. Let’s start a movement of self-care for the special needs mom. 

Carrie (1:12) So last week in our collaborative episode, we talked about the spiritual aspect of self-care. In this month, since we have five Tuesdays in March, we are doing two collaborative episodes of the three of us all together. We talked about how God teaches us about Sabbath and specifically about rest. He was an example of this when he took the day of rest on the seventh day after he created the earth. We also discussed how Jesus taught us about rest when he took time away from his ministry to pray, spend time with the Father, and rest. This week we want to discuss the practical side of self-care and rest. As I was doing some research for the podcast for this month, I came across an idea that I had not heard before. Now maybe you’ve heard about this first idea, but there’s been some research done on how mothers of children with special needs are experiencing Post Traumatic Stress Disorder. This mom, Meagan Cheney, wrote an article about her thoughts on PTSD. This is what she said, “Please stop calling it post traumatic stress because there’s nothing post about it.” She believes it is better labeled as “Chronic Traumatic Stress.” She went on to say that, “It's a chronic condition. It's continuous.” We are ever dealing with the chronic stress of caring for our children and some of the trauma that goes with it. I'll leave a link to that article in the show notes. Her ideas really struck me and got me thinking. I think we can all agree with her that our stress is current, and the trauma that we’ve experienced from different aspects of caring for our children does not go away. There’s the reality that some of us will be caregivers for the extent of our child’s life on earth. They may never grow up and be independent. For some of us, our kids will grow up and be independent, but we will never stop feeling the need to care for them in some way (as I think all moms do for their adult children). So, Amy, what do we do about this? What would you want other special needs moms to know about this chronic stress and the importance of self-care?

Amy (3:25) First of all, I love that term because it is true. It’s chronic. You're right you don't get past it. It's chronic. Knowing that going in, I think is the first step. I think we have this idea that okay just when this situation gets better then I'm going to take care of myself. When I get this traumatic thing, or this hospitalization, or this outburst dealt with then I'll take care of myself. If we know that it's always going to be there, we don't want to wait. Since it's not going to end, we need to advocate for ourselves and take care of ourselves. I would want moms to know, just like there's an IEP at school. When you go to school and your child is nonverbal, they don't just expect him to be verbal. Right? They don't say well forget it he's not verbal we can't help him. You advocate for your child, so they can adapt to meet his needs. That's how we have to look at self-care. It would be so easy to look at the person down the street, or your friend without special needs kids and think it must be nice. She gets to do this, this and this. That's not our life, so we can't wait for that life to happen. This is what I would tell my young totally overstressed Amy Brown self; you have to adapt to your life and not wait for it to get better. It may get better, it may not. You're gaining nothing by waiting. You're only hurting yourself. So that would be the main thing I would say. 

Carrie: What about you, Sara?

Sara (5:06) I think I would want her to know that it’s okay to want a break. Speaking to those who have medically fragile or even terminal children. For me, one of the hardest things that my husband and I had to get over was planning our retirement. We put it off for a long time because we knew what we were planning for didn't include our son. That was really difficult. Then there's times I just wish I didn't have to go through the 30-minute routine at bedtime. We have to stretch,  we have to do this, we have to do that. It's okay to want that. Immediately what follows that wanting a break is you having to say, “Oh wait a minute. I didn't really mean that, God.”  You know what a break really means: they're not in your life. It's okay to want to break. I don't think that you need to put that caveat to God all the time. He gets it. He's not going to be like - you want a break. All right that’s what she said. It's okay to feel what you're feeling. Like Amy said this is our reality, and the sooner that you lean into that. My reality is not going to change at all ever. Somebody told me one time that thinking negatively is bad. “If you think about your child's diagnosis every day that's just a negative way to live.” I thought how do you not think about your child's diagnosis? You obviously don't have a special needs child (A) and (B) it's not negative, t's reality. This is my reality. Just because I acknowledge my reality doesn't mean that I choose to stay. I'm not camping out in the negative parts of it. I'm acknowledging it, and I'm adapting. You can adapt to it, if you don't acknowledge it. That's what I would tell her. It's okay to want to break, and it's okay to lean into the sad parts of it. Just don't camp out there.

Carrie (7:22) And it's funny, Sara, because I have struggled with that. Even just you saying that has encouraged me today. I have done that caveat, “Well, no, no, no, please, Lord, don't take him because I don't really want that.” It’s okay. We’re human, and I think it's normal for us to want that type of rest and a break. One of the things that I would tell our listeners out there is don't just survive your journey. You can thrive. I have had to learn that the hard way. There are times we have chronic hospital stays, and I will let my body and my eating habits go to the trash can. I don't know what the phrase is. I'll eat all the sweets. To an extent, I think that's a little bit okay because you're just trying to survive in those moments. When you're there for weeks and months on end, you have to pick up. We've got to keep going and exercise or take the breaks from the hospital if you have a good support person to help you. I have a friend that I know that I volunteer with at our local children's hospital. Sometimes I see her journey through social media, and she’ll post doing workouts on the hospital floor next to her son. I think -  I cannot believe that she does that. It's such an encouragement to me because it has taught me that I don't have to wait for life to be calm to take care of myself. You can do it now. You don't have to wait for life to be calm to do self-care. The time is now. The time for eating well and doing a 5-minute stretch or a 10-minute exercise, or a 5-minute walk outside the hospital is now. A nurse can come sit in your room for five minutes to give you that break. I think it’s really important. What has been your number one practice of self-care? What is your favorite thing to do for self care? Let’s get practical here.

Sara (9:49) I think for me, the number one thing that I do is I schedule it. I haven't done that for a long time. I just recently started doing it again, and I schedule it like I would a doctor's appointment. I schedule it like something else. To get really practical and to nerd out on you is the last working day of every month, I sit and map out all my client work projects and all of that. That helps me not take on a new project, or a new client, if I don't have the time to take them on. I can see it there on the calendar. What I've started doing is I schedule that a month out. I give myself an hour every day. If something pops up, or I have to go get my child or something, that gets moved. I move it to a different time. Like I said in the last podcast is, it's not always going to be easy. It's not going to be something that you want to do. You might just want to veg out in front of the TV and watch Netflix at 8:00 at night but something happened, and you know that you're going to be better off for doing that self-care. I've been scheduling it. That's been my big practice. I think that's been a game-changer for me. 

Carrie:     Yeah that's really good. I talk about the 5 P's of Self-care in mine and that's the one thing: plan it and then protect it. Don't let other things interfere with it. How about you, Amy?

Amy (11:17)  Well, I'm going to use the “P”, protect. I am a big introvert. I have six children, so  God is laughing uproariously, that he gives me a really loud house. Most of them are grown now. I've always been an exerciser. I consistently spend at least 15 minutes, even if it's only 15 minutes, with a cup of tea in my journal in complete quiet every single day. It's longer than that now that my kids are older, but I have done it in a stairwell of a hotel, or a hospital. I don't care where we are. I need that 15 minutes or more. I would love more. I know I'm wired that way. I used to feel bad about that because I thought well, why can I just get right up and be in the thick of it all with everybody. I am such an introvert. I love quiet, and I also can't stay up late. I know that about myself. I wish I was the fun party mom that could stay up late. I just can't. So I think for me knowing that about my personality and not protecting that time and also not guilting myself about it right? I'm a much better mom when I do that. That's important. But I'm a much better me for me. For me. I'm less critical of myself. It's like a centering practice for me. Sometimes I read my Bible, sometimes I journal. Sometimes I sit in quiet, but I always have a really good cup of strong English Breakfast tea, and I just have to be alone. I get kind of anxious if I oversleep and I know somebody is going to get up. But my kids know that this is just my time. That has been a sustaining practice for me for years and years and years. I've done it in all kinds of places. I even will kind of map it out. If we’re at a hotel, I'll map out where I can go where the TV is not going to be on. Everyone has a TV on at a hotel. Where can I go to have quiet? It just has to be quiet. So that's one thing that I have done for years and years. It just centers me.

Carrie (13:28) I can attest to this because Amy and I were hotel roommates last year when things kind of opened up. She wouldn't wake me up, she would go out in the hallway to do this. I think now I want to be like Amy when I grow up. It’s such a good practice. The number one practice that I have been learning lately is to pay attention to your body and the things that are stressing you out. I'm still not great with planning self-care, but if I've had a hard day or I've been processing something difficult, especially if I've had a hard day with grief. I had one last week. 

We went into a regular doctor's appointment with our son's orthopedic surgeon, and there was a curveball that came out of left field. Our son needs a major back surgery. I just wasn't expecting it. And first of all, I went through all the emotions of just even being angry at myself because I had let my guard down and then the grief came. I realized it's okay to let your guard down. I took a 20 to 30 minute bath that night. I just it's not something I do all the time. I knew I needed it because I was paying attention to the way that I felt that day and the tears that had been spent and I've learned to drink more water on those days that I have had days of grief and how important that is. 

Amy (15:11) Carrie, I think it's good that you didn't power through it because that's typically what I think all of us would tend to do. He's got to go have surgery on it, I’m going to get all this stuff done. You didn't power through it, you allowed yourself to have that moment. I think that's important for our listeners to know that it's okay to do that. Powering through it only hurts us in the end, but you have to recognize it first. Sometimes it doesn't look like you think it's gonna look like. You might just be crabby, or your neck may be tight. It may not look like what you think it's going to look like. I think paying attention is so right.

Carrie (15:50) I had a friend remind me last week, too, that grief comes in the form of anger,  weariness and frustration. It's not just always sadness. So you're right. I think all of us can speak to this, the younger me would just try to power through it. I'm aging, so you can't do that as well; that's part of it. But also, just being more aware, I think, for all of us.

So how about this? What advice would you give to other special needs moms about self care, in the beginning of their journey, maybe their child's just been diagnosed, or they're starting to become aware of behavioral issues? Maybe they don't have a formal diagnosis. Do either of you want to tackle that? Let's talk about the different stages of parenting with special needs children 

Amy (16:50)  I would say for us, we didn't have a diagnosis. We had this meandering path to get to it. So when you have kids with behavioral issues, and invisible disabilities, you're trying to figure it out. There's no like straight up, oh, it might be this, you get a lot of different opinions. So much of the limiting factor in parenting them is behavior based. So you have a lot of guilt and shame, and people looking down their nose at you thinking you're not a good mom, because you can't control your child in the grocery. All those things. So I think, for me, and I've said this before, I just tried harder and harder and harder. This is a long, long journey. It's a marathon, it's not a sprint. So I wish that I would have at the very beginning just been able to whisper to myself, just calm down, right? It's going to play out. You're going to get the information you need, hopefully when you need it. And you need to take this one day at a time. I guess you feel you're so frantic to figure out what's going on that you're just like running around a little Energizer Bunny. That's not typically how it plays out probably with any of the diagnosis actually, not just behavioral, invisible disability. It's a long haul. So breathe, and take a minute, and then just do the next thing. That’s the advice I would give. I know that's hard in the moment when you get that diagnosis. But that's the advice I would definitely give.

Carrie (18:28) I think for me early on in our journey, since Toby's diagnosis was from birth, I had three children three and under; self care was making sure that my kids had a naptime and a rest time every day. And I know that sounds extremely practical. Sometimes that's not practical. I know kids with autism don't sleep very well and things like that. I was grateful that we had spent so much time in the hospital that they had Toby on a fairly decent routine by the time he came home at three months. I would encourage our listeners to fight that urge when your kids are resting or sleeping to just clean the house and do all the things. Take some time to sit and rest whether it's quiet, reflection. One of my self care practices is just reading a book. I love to read fiction stories and to read soothing stories with encouragement. I learned so much through reading, historical biographies, Corrie Ten Boom and other people who have overcome hard things in their life. One of my favorite books series is At Home in Mitford by Jan Karon. It's story based. There's not a lot of action and things like that, but it's very soothing to me. Through the main character, the author has shared amazing wisdom through her books that I've even used in some of my speaking when she talks about different struggles that the character goes through like grief and dealing with a chronic illness and things like that. Taking that time to protect your nap time, or your rest time with your kids, and not doing all the things. So how about you, Sara? Do you have anything to share for the beginning of the journey? But how about the middle age and the teen the teen years since I know, your son is a teenager? 

Sara (20:45) Yes, yes. I'll just leave it at that. Just survive the teen years, that would be my advice. I think it goes for any stage. I have to adapt. I think this goes for anybody, not just special needs moms, but especially special needs moms. When we got the diagnosis for TJ, I was working full time. I had a career. I took breaks on lunch and went and worked out. I would go and take a walk. I ended up coming home and not working full time. I left my career. That's okay. And I was very grateful that I was able to do that. But I had to grieve, that I couldn't go to my class at lunch every day. It sounds so trivial, but I think that it's okay to grieve the changes that are going to happen, and that includes the changes that are going to happen to you. You might not be able to sit down at a certain time and read a book, but you might have to adapt to it. It's okay to grieve that. It's okay to say, well, that's not fair. I would suggest that you just push through that level to, what can I adapt to not give up? Don’t say, well, it's not in the cards for me anymore. It's okay to grieve, and it's okay. But to just move on and to say, what can I do now? You know, for me personally, not only with TJ, I have some health issues that I've been battling for a few years. For me my self care has completely changed. Now it is a nap. I would have never thought three years ago that I would take a nap in the middle of the day. Sometimes that's what my body needs, and that's okay. As time goes on, as the diagnosis changes, or maybe it doesn't change, but as your circumstances do, just flow with it just to try to adapt to it. As Amy said, protect that time. I can't fit yoga in at this time. No, but when can you? What can you fit in at this time? So that would be my main advice is to go with the flow, especially teenagers.

Carrie (23:08) Amy, what advice would you give to those moms who are raising children with invisible disabilities and behavioral disabilities about their journey with self care? 

Amy (23:21) Well, I'm gonna say something that’s probably not going to be popular, but that is to ask for help. I know for us specifically with kids with reactive attachment disorder, their behavior is so out of control for me, but not for other people. But I often wouldn't ask my friends to take my daughter out for a couple hours because I thought she was gonna be out of control. She never really was. There's that honeymoon phase, and her behavior was really directed towards me. I would also say, in asking for help, think outside the box of asking for help. You don't have to be at all the things. I have six kids, my range is 15 or 13 years. When our daughter needed to go to speech therapy, my 17 year old teenage son took her. They give you a sheet at the end that tells you what to work on. I didn't have to be there for that. If I didn't have so many kids, maybe I would have been there for that. But her behavior, I needed a break from laying eyes on her. I don't mean that to sound mean, but I needed a break from her. If I was there, she would act out. I had a situation where somebody kind of made a comment about me not being at the therapy. I remember having my feelings hurt a little bit. “Okay, you guys don't know my life.” I had somebody that could stand in for me, and I didn't need to be at all the things. I would definitely say that and ask for help. Most of the time kids with behavioral issues are okay with other people. It was my own fear that she would misbehave for somebody else that would stop me from that. I would also add that when you have kids with behavioral issues, I don't have a golden nugget of advice for this. It's been a lifelong thing I've learned. You have to put your blinders on about what people think and say. You just have to swim in your lane and say, “I'm doing the best I can and nobody knows the situation as well as I do.” I had to let things roll off my back that people said because there's a lot of judgment when it comes to this kind of thing. I have a child with a physical disability, so I can compare the two. He has a lot more grace. He gets more grace than my daughter did, and he has behavioral issues, too. I wish I would have asked for help. Actually one of my dearest friends said to me awhile back, “I didn't know how to help you because you wouldn't tell me.” They're not going to know how to help us, unless we tell them. It was interesting to hear her perspective. She said, “It was so hard to watch you struggle. I just wanted to give you a hand, but you wouldn't tell me how. Whenever I would ask you, can I help you? You’d say, no, I got it.” Now, why did I that? Now that I'm looking back, I'm thinking, why did I say that? I had people asking to help me. I just kind of got in my own little shame box of thinking, oh, she's gonna be terrible. They're gonna think I'm a bad parent if they see how she acts. I wish that I would have given myself the grace to accept help.

Sara (26:35)  So, Amy, you were talking about how you were keeping those out that might judge you. You were actually keeping out the ones that wanted to help as well.

Carrie (26:48) That’s so true. I think it's time to wrap up our episode for today. This has been such a great conversation. I came across this resource, and it's by a woman named Colleen Kessler, at her website, www.raisinglifelonglearners. I'll put the link in the show notes. She has a list of calming activities to help with intensity. This is actually directed towards kids who are gifted and maybe need some, like quiet time. What's interesting about this list is that these are all things that we should be doing for self-care. It has like sleep, quiet time, and water play. How about taking a bath, right? It has creativity and imagination, sensory play, exercise, and motion, reading, humor. Sometimes just pulling up a good YouTube video or a fun comedian to watch is just such a restorative activity. Then there are break time and timeouts. I’m going to put a link in the show notes because I found this. I know it's directed towards kids, but you know, I really enjoy painting. You can find people who have step by step canvas painting tutorials online. During the shutdown with my daughter, we would go through the drive thru at Michaels, and get our canvas and our paint. Then we would watch videos and do these painting exercises. I thought that it was such a restful type of self care, and also time that I got to spend with my daughter. So I don't know if you guys have any other just little practical things like that?

Sara (28:44) I would remind the listeners that another way to look at self care is you're setting an example for your children. You're telling them that as individuals as God's creation, we’re worth

rest. We're worth spending some time on ourselves. It might not be a direct lesson for them, but eventually they're going to remember. My oldest son who is typical, not special needs, I want him to know that his wife might need a break every once in a while. He's gonna learn that by watching me. Yeah, I remember my mom taking breaks. Instead of my mom, no, she was always busy. She never ever took breaks. She was just crazy all the time. That's what I want out of it. So your self care will actually strengthen their self care eventually. And, yeah, 

Amy (29:45) I was also going to say as we talk about the concept of how we mother our children, we need to mother ourselves. We are God's children, and he looks over us with delight. We know how we feel when we see our kids well rested or enjoying something they really love. That brings such joy to my heart as a mom. If the listener can think of herself as God’s child. That's how God looks at us when we are enjoying what he has given us, our natural bent and the things that fill our cups. He made us this way. We are His children, and I think that's something that's easy to forget when you're a mom.

Carrie (30:21) Yeah, that's great, Amy. So on that note, would you pray for our listeners to remember these things, and we'll close?

Amy (30:32) Dear heavenly Father, thank you so much that you love us, and that you lead us beside still waters and that you want us to rest. I pray for our listeners today that they would be able to find moments of joy in rest in their day that you would show them areas that they can take care of themselves, find delight and joy and Sabbath in their days. Thank you Lord for loving us and always showing us that you care for us and that your mercies are new every morning. Amen.

Carrie (31:21) Thank you for joining us this week on Take Heart. Don't forget we have the Self-care Instagram Challenge going on and Amy's wonderful resource Seven Steps to Help you Breathe. There is a link for that in our show notes. As always, you can follow us on Instagram or Facebook @takeheartspecialmoms. Please listen in next Tuesday, as in April, we are starting our new topic for the month, which is dealing with grief as a special needs mom