Episode 152: January 2,2024
Summary: Amy shares her top four things she wishes she could have done differently through her 31-year journey as a mom, particularly to her kids with invisible disabilities. Things like managing emergencies, acknowledging responsibility boundaries, and understanding the limitations of love are topics she touches on in this episode. Join the conversation and discover that you are a great mom as you walk your special needs journey!
Key Moments:
[2:45] Not everything is an emergency
[4:45] Hurry is an inner condition that is fear based
[7:50] Being present but not responsible
[9:45] Loving my child in her way
Resources:
The Good and Beautiful God: James Bryant Smith
If you enjoyed the show:
Episode 152: January 2,2024
Summary: Amy shares her top four things she wishes she could have done differently through her 31-year journey as a mom, particularly to her kids with invisible disabilities. Things like managing emergencies, acknowledging responsibility boundaries, and understanding the limitations of love are topics she touches on in this episode. Join the conversation and discover that you are a great mom as you walk your special needs journey!
Key Moments:
[2:45] Not everything is an emergency
[4:45] Hurry is an inner condition that is fear based
[7:50] Being present but not responsible
[9:45] Loving my child in her way
Resources:
The Good and Beautiful God: James Bryant Smith
If you enjoyed the show:
But I decided to name three ways I can love her in this season. They don't seem very loving in my book, but this is what she's willing to accept for me. My daughter works at Pizza Hut. She brings home some kind of Pizza Hut every single night. I don't really like it. And I noticed she kept bringing stuff and her dad would eat it. She kept trying to bring different things and handing them to me first. Then I realized, Oh, she's bringing this for me and I have to eat it. So eating a small bite of Pizza Hut that she brings homeis one way she will accept my love.
Welcome to Take Heart, a podcast about creating space for connection, hope and joy as a mom to a child with disabilities or special needs. We want you to feel connected and encouraged as we navigate this messy, emotional and joy-filled life together. Hi, I'm Amy Brown and you're listening to episode 152. This month we're talking about what we wish we had known.
Now I've been married for 37 years , a mom for 31 years, and a special needs mom to kids with invisible disabilities for 22 years. When I look back at the beginning of all these journeys, there were so many things I did not know. But I think sometimes we have this expectation that we need to know a lot of things at the beginning. Recently, I went back to grad school. This is the first time I've been back to college since the 80s, where we did not have computers. Yes, that makes me sound ancient.
I spent so much time being frustrated by what I didn't know, specifically in technology. I would lament to my oldest daughter, Anna, who's a college English teacher, I would say, “why don't I know this?” And she would very gently say,” Mom, you're not expected to know it, you're a beginner.” It's hard to embrace being a beginner. And there are many points on this journey where we once again are a beginner. Maybe that's when you're navigating the first time you get the diagnosis. Maybe that's...18 years down the road when you're navigating what to do after high school. We are constantly asked to be beginners.
After all my years of experience as a parent, and when I look back at young Amy, I want to look at her with grace and compassion, which is not my usual stance. If I'm being completely honest, I kind of nitpick her and say, why did she do that? Why didn't she know that? Why didn't she try this? Why didn't she do this? And that is not a place of grace and compassion and acceptance.
Today I want to talk about what I wish I'd known. I really wish we could sit across from each other with a warm cup of coffee and I could share these lessons with you. I know how much pressure you put on yourself to get it all right. I wish I could look you in the eye and say that you're a great mom, you're doing good work, and you're loving well, and you are enough. Let me say that one more time. You're a great mom, you're doing good work, you are loving well, and you are enough. Since we can't sit together,and have coffee, this podcast will have to do.
So let's begin.
Number one: Not everything is an emergency. Now, before I go any farther, I realized there are straight up emergencies. Obviously there are emergencies like hospitalizations or dangerous behavior that has to be stopped. But most of life is not an emergency, even though in our brains we think they are. This is our scarcity and worst case scenario mindset taking over.
When I first got the diagnosis that our daughter had fetal alcohol syndrome, we had just had a neuropsych evaluation, and the report was 10 pages of things to do. I went home and plotted it out. I was going to do every single thing. I was going to throw everything I had at every single action point. Well, first of all, that is not even the least bit realistic. Second of all, it wasn't an emergency. So much of what happens with kids with behavioral problems is a long, slow walk in the same direction,with one step forward and three steps back. Now I know that can be incredibly frustrating when you're trying to make something better, but friend, we have time. We need to lower our expectations, slow our roll, and ask ourselves, what is the most important thing I can do today? Here's a little practice I like to do. Number one, name the thing you think is emergent. For example, let's say your child is raging every day at school, and you think you need to fix it right now.You need to name it. You name what's happening, child raging after school. Now before we go on, notice I did not say, my child is raging, it will never get better, and she's going to grow up and be in jail. You may feel all of these things, but let's take the emotion out of it and just name it. Second, what is the one step I can do today to move me towards making things better? I didn't say making things completely all the way solved.
I said, what is the one step I can take today to make it a little better? And number three, speak the truth over it. This is not an emergency and I need to trust God. Friends, we have time to do the next right thing. We have time to slow down and take it one step at a time. We need to do our best to eliminate the hurry mindset. In his great book, The Good and Beautiful God, author James Bryant Smith says this, “hurry is an inner condition that is fear-based.” I am guilty of that all the time.
For example, let's say you have to figure out the next steps for the IEP. Let's say the IEP is not even for six months. A hurry and fear-based mindset would say, I have to figure out the IEP prep right now. If I don't, everything is ruined and my child will fail. As opposed to, I need to make this a priority in the next few weeks. I will block off time to work on it, but if I don't get to it right away, it will be fine because God walks with me.We still need to do the work in front of us, but we can do it at a pace that doesn't stress us. Smith goes on to say that hurry is not part of a well-lived life. I would agree nothing good ever happens when I rush. I may get the job done, but I have stressed myself and my family in the process.
Number two: Everything is not my responsibility. Now this one's hard. As mothers, we feel like we have to give a million percent to everything. Dads may feel this too and I don't mean to leave dads out, but in our home, I am the Olympic champion of taking it all on my shoulders. My husband is very loving and a great dad, but has this amazing ability not to overthink or over worry about things. Before we go to bed, I can tell him something really stressful about one of our kids, and he says, let's not worry, then he falls asleep. What is this madness? I do not know, I do not experience it. As I said, I have several gold medals in worrying.
So if everything is not our responsibility, what does that mean? Well, I recently had a conversation with a mother of kids with reactive attachment disorder, and she said to me, all this work and time and effort, and this is the only result I get. Now I understand that feeling so deeply, because as a mom to kids with behavioral issues, especially with my first child that had these issues, and yes, I have three of them, I threw the book at it. I didn't let any stone go unturned. I worked so hard and put so much responsibility on myself to heal the trauma in a brain that I could not heal. I can't change the effects of alcohol on her brain. I can't change the trauma my kids went through, but I felt like it was my responsibility. I felt like I had to solve every single problem and do every single task. But what if I would have started with a different posture? Started with being present first, looking at the situation, taking the responsibility off myself, and find the next thing I can do to be present.
I think it's hard to get out of this mindset that everything's our responsibility because there's a lot of pressure put on us moms. Also, when you have kids with behavioral issues, there's a lot of blame put on moms. So of course I think it's my responsibility when my child steals, bullies, or engages in any negative behavior, but everything is not my responsibility. A friend of mine from grad school said to me recently, I'm learning that being present does not mean I have to be responsible. That's a good word.I'm learning that being present does not mean I have to be responsible. Here's a perfect example. When my child was at school, she would act out. And I felt like, Oh my gosh, I have to go in and fix it. But that's the school's responsibility because I have warned them about the specific behavior. We have plans in place to take care of said behavior in her IEP. It's not that I don't have to take part in it. I'm not saying that you just ignore the school or the situation, but I can say,that this is their responsibility too. I've set up frameworks, I've advocated for my child. If they're calling me for something they already know the answer to, then it is not my responsibility at that moment. Another idea is to share responsibilities. For example, I get highly triggered when the school calls or when anybody calls, because I've had some really scary phone calls about my kids. So for a while, I had my husband take the calls from school.Or if we found a caregiver that would stay more than a day, which wasn't always the case, when we would come home from being away, I would let my husband take the report, the caregiver report, because I felt like if I knew all the negative behavior that happened while I was gone, it would just ruin my evening. So my husband took that and then told me what I needed to know. So everything is not your responsibility.
Number three: Love is not enough to heal generational trauma.
This is another one that's very hard for me to admit because I wish I had known this at the beginning. Lots of adoptive moms come to me with the assumption that if they just love their kids, they're gonna be okay. Now I'm not dismissing the power of love. We know the transformative power of God's love. We know that our love for others is always the right choice. We always have to turn and love others. But to think that the amount of time I'm putting into my child can change generational trauma is unrealistic.
I had to accept that loving my child with attachment issues looks different. I wish I would have learned this early on and love my child in the way she could accept it. For example, I have a child who continually pushes me away due to attachment issues. I want so much more for this relationship. But I decided to name three ways I can love her in this season. They don't seem very loving in my book, but this is what she's willing to accept for me. The first one is driving her to school. Now to be if I'm being completely honest, she's almost 18 and she doesn't have her license because guess what? It's kind of her fault. She didn't pursue it. She resisted it. So I have to drive her to school. So my morning bad attitude makes me want to go. “Walk ,it's your fault. You didn't get your license.” But obviously that's not the path I should be taking. So instead I drive her to school. That shows her love. The second way I love her is I eat Pizza Hut. Now I know that doesn't sound like a big sacrifice. My daughter works at Pizza Hut she brings some some kind of Pizza Hut every single night. I don't really like it. And I noticed she kept bringing stuff and her dad would eat it, but she kept trying to bring different things and handing them to me first. Then I realized, oh, she's bringing this for me and I have to eat it. So eating a small bite of Pizza Hut that she brings home is one way she will accept my love. The third way that I love her is making her soup. She has a lot of eating issues and is struggling with eating disorders. But if I make a big pot of soup, She'll eat that all week. And that is, I'm not lecturing her to eat, I'm not parenting her, I am just making soup. Now this is, those three things, those very small things don't really seem like love, but to her, that's what she'll accept. It's not what love looks like with my kids with a healthy attachment. We have a deeper relationship, this is what she can accept. And I wish I would have realized this long ago. It may have saved me from a lot of hard feelings.
And finally, and honestly,
Number four:I think is the most important one,Your well-being matters.
I wish I could go back and say to young Amy, slow down sister, take time to take care of yourself. When I work with my mentor clients, we start really small with this idea that we have to be well-resourced and nourished. As caregivers, we say, I don't have time to take care of myself. Listen to me, you don't have time not to. I know several women around my age who just barreled through like I did and didn't remember to take care of themselves. And now we're all paying the price. We're all dealing with issues with our body that resulted from not taking care of them. These issues included autoimmune diseases, migraines, weight problems, poor joint flexibility. So if I could go back and tell myself anything, I would say slow your roll, do what makes you feel well-resourced, find the things that make you happy, and do them every day, even the little things. They don't have to be extravagant like a beach vacation, which would make us happy. Of course, it would make everybody happy.
But as parents of kids with disabilities, we can't do that. So how about we start small? Ask yourself this question, how can I well resource myself in a really challenging season? Recently during a difficult season, I decided to prioritize three things, hydration, nutrition, and movement. I drank a lot of water. I did my best to eat well and I moved. Sometimes we put this mentality that if we can't do the whole big thing, the small things don't matter.I am guilty of this because I'm a super high overachiever. I love long distance athletics. I've ridden 350 bike rides and run marathons and half marathons. So to me, a 20 minute walk seems like nothing. But that's just me personally. I'm not judging you if you only take a 20 minute walk. I had to learn to lower my expectations of what I thought I needed because many times I would say, if it's not an hour run, it doesn't count. 10 minutes of stretching, moving from my kitchen or my computer to my porch or walking around the block. Those things matter because they help us be well-resourced.
Now those are the four lessons that I've learned. Everything's not an emergency. Everything is not my responsibility. Love is not enough to heal trauma. And my wellbeing matters. There are so many more I could say to you, but those are the ones I'm gonna start with. Reach out to me if you'd like to discuss anything that I've talked about today or have some questions. You can respond to our email or Take Heart's email. Reach out.
Take Heart (14:24.01)
I'd love to have a conversation with you. And let me say one more time, you are a great mom, you're doing good work, you are loving well, and you are enough. Thanks for listening today.
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