There are emotional complexities and practical considerations of caring for children with disabilities or special needs during emergencies. In this episode, we discuss our conversations with our kids about emergencies, how we prepare for these inevitabilities, and how to recognize our personal needs to find emotional support during these crises. This episode will empower you to have a plan but prioritize your well-being while caring for all your children in these challenging times.
Key Moments:
[4:34] Censoring medical history for son, balancing information
[11:49] Mom's emotions and the need to express them
[18:00] Emergencies caused by behavior should be discussed after it happens
[39:50] Anxious about an upcoming trip because of past trip traumas
[43:25] What calms you? How to avoid a meltdown
Resources:
Sara's Emergency Checklist: 6 Manageable Steps to Prepare Your Backup Caregiver
If you enjoyed the show:
There are emotional complexities and practical considerations of caring for children with disabilities or special needs during emergencies. In this episode, we discuss our conversations with our kids about emergencies, how we prepare for these inevitabilities, and how to recognize our personal needs to find emotional support during these crises. This episode will empower you to have a plan but prioritize your well-being while caring for all your children in these challenging times.
Key Moments:
[4:34] Censoring medical history for son, balancing information
[11:49] Mom's emotions and the need to express them
[18:00] Emergencies caused by behavior should be discussed after it happens
[39:50] Anxious about an upcoming trip because of past trip traumas
[43:25] What calms you? How to avoid a meltdown
Resources:
Sara's Emergency Checklist: 6 Manageable Steps to Prepare Your Backup Caregiver
If you enjoyed the show:
Ep. 167: Navigating Emergencies as Disability Parents
Amy Brown: (00:00.174)
The first thing you do is ask, “What did I do wrong? How can I do it better? What therapy do they need?” And I always say we need to suspend that. When the Red Cross comes in, in a tornado, the first thing people are doing, they're drinking water. They're eating. They're not building, rebuilding their house. That takes a long time, right?
Sara Clime:
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, joy -filled life together.
Hi, I'm Sara Clime and I'm here with Amy Brown and Carrie Holt. You're listening to episode 167. Today we're talking about emergencies. Before we even get started, Carrie, Amy and I don't have experience with every type of disability, obviously, nor do we have the same familial, societal, educational or personal experiences. Because of all of those reasons and more, we obviously won't have all the answers, especially when it comes to emergencies. Not only that, what works for us, our children and our families may not work for you. However, we will share what we know and hope that you will email us at takeheartspecialmoms@gmail.com with your expertise, opinions, and even additional questions. This is an ongoing conversation as always. And we firmly believe in not reinventing the wheel. So, we welcome everyone to share their resources. I don't think any of us caregivers or disability parents, special needs moms, whatever our titles are, none of us are strangers to emergencies.
What I think might be different for us as caregivers though, is that we don't navigate emergencies quite like the average person, actually like anybody else. According to many emergency organizations, centers, local and state agencies, there are five phases of emergencies, and they are:
Prevention, and this is exactly as it sounds, it's taking action to avoid emergencies from occurring.
Mitigation, this is about accepting that emergency will happen, and the steps taken to lessen the impact or reduce the damaging effect of an unavoidable emergency.
Preparedness, this is the continuous cycle of preparing, evaluating, planning, advocating, educating, training, and organizing. So, in the event an emergency happens, we respond well.
Response, that is our reaction to the emergency and the actions we take during an emergency, hopefully reducing the overall impact of the emergency.
Recovery is the final phase. And in this phase, we work on regaining our equilibrium and returning things to rights in the wake of an emergency.
Sara Clime: (02:25.614)
Personally, I think caregivers are too often operating in every phase of the emergencies, and they do that simultaneously. Do we even realize that we are consistently navigating through the phases of emergencies? I don't think I even realize it half the time.
I think this is why we experience mental and decision fatigue. Caregiver fatigue is a real thing and these emergencies, I think, takes up a big portion of it.
Amy, do you want to share with everyone what you said when we first started talking about this episode and what we were talking about?
Amy Brown:
No.
Sara Clime:
Do you remember? You said, what actually is an emergency? Is there a definition of one? I just had to laugh at that. I think you said, I don't even know anymore.
But what we're talking about, we all know the emergencies that happen for our specific child with their specific diagnoses. And that's one of the types of emergencies. But emergencies can be external emergencies, social, community, state, federal, global, whatever, family emergencies. Those are deaths, illnesses of others, and things like that. Personal emergencies, like we just talked about, are accidents, surgeries, admittance to facilities. Like I said, we are no strangers to emergencies. However, navigating emergencies and the five phases of emergencies often become mundane to us. That's our “normal” (quote unquote). But one thing I often forgot to focus on earlier in my journey as a disability mom is that it is just as important, actually, I think it's more important, at least in my case, to help my son, who is the actual one with disabilities, to navigate these emergencies. And I think as moms, we do that for all of our children. You learn how to help your child navigate emergencies.
What I want to talk about is how do you talk to your child about emergencies, whether that's the external, the familial or the personal? Do you have to censor what you tell them? If so, how and in what ways?
Carrie Holt (04:44.814)
So I think the answer for me is yes. I've it throughout my son's life. I definitely have had to censor what I tell him. And especially related to his condition, his surgeries, his hospital stays and things like that, to the point where even now that he's older and able to comprehend and understand, I've been taking the time to go back and show him pictures and videos of things that he's gonna need to know that medical history himself, and he has no recollection mentally of it.
I firmly believe his body remembers, there's a lot of evidence and proof and research around that, that your body remembers things, but sometimes you can't necessarily, he doesn't remember his four to six hour convulsive seizure when he was five, or how he didn't, obviously, you know, how he struggled to breathe when he was an infant. So I think it's preparing them and also it's just that, it's that tension, right, between giving them enough information to handle what's going on and also, you know, not giving them too much that can overwhelm him. And for instance, like one of the things just happened recently, I had a friend that I used to volunteer with at the hospital that she lost her son with spina bifida at 26. And I was hesitant to even tell and share that with Toby because I didn't necessarily want to overwhelm him with thoughts of dying and death and things like that. So I don't know, I don't have an answer just that it can be hard, I think, to figure it out.
Sara Clime:
Yeah. And I think it's harder, not harder, but it's just, it's, I think, more difficult to navigate with our children with disabilities because, or special needs because they, like, I know my oldest son, I have, be age appropriate. You don't want to shelter them too much, but you don't want to, you know, be, project your fears onto them either, or have this anticipatory trauma projected onto them. But with our children with disabilities, we know that most likely some very heavy things are gonna happen. And so I just think it's a little, maybe that's the word I'm trying to look for is that it's heavier when you're navigating this.
Carrie Holt: (07:10.094)
Well, I just wanna say, I think sometimes you can frame it in such a way, like I know what the most common things that occur with his condition, that would be the mortality things like wounds and kidney function. And so with him, and because we can, and I know not all of our listeners have kids who are verbal and who verbally speak or could have the mental comprehension to understand all these things. Obviously, again, this is a wide range like Sara said, but I try to frame those things in such a way of this is how we take care of our bodies because these are the things that we don't want to happen. Not like going through the worst case scenario all the way down to the end of the road, but in a kind of a empowering way. This is how we want to eat. This is how we want to check our skin. This is how we want to approach these things. So it's that preparedness stage of emergency preparation, I guess.
Sara Clime:
What about you, Amy?
Amy Brown:
Well, I feel like I got nothing on this. Actually, I've been thinking as you guys were talking that it's really different with kids with behavioral issues because you can't project what the outcome is going to be. You just, I mean, there are times when you're thinking they're going to be in jail, they're going to be this, they're going to be that, like when their behavior is so out of control. So obviously you don't want to speak that over a child. So if it's about their own behavior and disability. I don't think you can. I think you can talk about things afterwards, like you were really activated when this thing happened, you were really upset. And maybe the next time, this is what we can do. I think that is about all you can do because you don't know the trajectory of and a lot of times there's no rhyme to reason to why they are acting out. The women I mentor, we have lots of conversations about this, like we can't predict when they're gonna have a good day or a bad day or when something's gonna trigger them. So I think it's a case by case, day by day thing with kids with behavioral issues. And if it's an emergency that involves something outside of them, then as you would with any child, you just be age appropriate and do your best not to activate fear or behavior.
Amy Brown: (09:34.414)
I know our daughter, she was really good at reading emotion and manipulating
the person with the emotion. She would laugh when people would cry. She would, that's just how she handled emotion. She just kind of knew your weak spot. So I had to be a lot of times when we would have an emergency or something that was about to happen to be very like flat faced. So she wouldn't pick up on that. And I think that's, that can be, I've heard other moms say they have to do that too. Cause she said there, I mean, instead of like, your child feeling your fear and being afraid themselves, she would almost exploit it. And that's not what you want to be dealing with in the thick of something.
Carrie Holt:
Yeah. I've had that same situation with Toby too, like because I have spent so much time in the hospital with him and in ambulances and emergency rooms, he has learned to read me, my face, my body language to the point where sometimes I think he knows what's going on inside of me before I realize what's going on inside of me and not to the point where he will manipulate it because that's not him, but he will internalize it. And then it starts to affect him. Sara, has that been the case with you, too, at TJ?
Sara Clime:
Yeah. He's he's very in tune to my emotions. I think he's more in tune to my emotions than his own. So I think I really have to watch what I say, how I say it. I actually have a friend of mine whose daughter is nonverbal and she said her and her husband will not have those discussions until they're in private. Because she, they don't know, but she could understand that. But it seemed like her stress would heighten with their stress as well. And so then they would maybe talk about the emergency situation, but they would do it in a way that they thought was age appropriate or cognitively appropriate for her. Or maybe they might not discuss it at all. But I think a lot of times our children are picking up more and, I know with TJ. Okay, so just yesterday I had an issue with one of my teeth and I told him, I said, if they tell me ‘this,’ I am going to cry. And I need you to know that I will be okay. It's just me expressing emotion. He goes, “Okay.” But, I have to have that conversation with him because if I'm stressed, he's beyond stressed. And I think that makes it even harder in emergency situations.
Sara Clime: (11:56.078)
At least for me, I spent a lot of the time earlier [as a disability mom] not expressing my emotions because I didn't want to hate his emotion. And over time I realized, no, he has to learn that I'm human and I'm allowed to do that too. So it's just such a weird, I don't think we're ever gonna be, there's no - It's such a weird tension. I don't know, maybe there is a right or wrong.
I just think it's kind of like, let's just play it by ear and go with it. Right now It's just, we just kind of wait and see whatever the emergency is. And then sometimes I have to, you know, my son broke his leg. The last time he broke his leg, I was in the hospital and I was crying, but it was late at night. And of course I thought maybe he just wouldn't hear me, but he goes, “Mom, are you okay?” And I said, “I'm just really tired. I'm really stressed. I'm worried about you. I'm worried that you've been in pain for two days now and now the surgery.” And so we talked about why I was stressed.
And I think it helped him to realize, this will pass. Like we know that in a month you're not going to be in pain anymore. But it's just me being mom and expressing my feelings.
So, and I did not want to have that conversation at whatever time, it was like one or two o 'clock in the morning. I wanted to be able to cry and I thought he was drugged up enough not to wake up, quite honestly. But he wasn't because he's Superman. So he woke up and then was like, are you okay? And then I feel this guilt because I'm like ‘you just had surgery’ and he's like, ‘mom, are you all right?’ But I think it's important that through emergency situations too, that you grieve together, you talk about it if you're able.
One of the things, and I know this is probably different from both of you, but my son attended public schools. In public schools, they have multiple drills. They have fire drills. Where we live, we live in the Midwest, there's tornado drills. There are lockdown drills, there are active shooter drills, which are so traumatic, that's a whole other story. But he has sensory issues and so we made sure to talk to the school. We added an emergency plan that fit our son's mental and physical needs. There should be a section in IEP, but there's not. But I made sure to talk to them before school started. This is what it is. He has this sling if he needs to be carried out, if he's on the third floor and the elevators are shut down.
Sara Clime (14:18.254)
We went through all of those steps and it was daunting. But then I made sure to email this plan that I wrote up to all of his teachers. I went to open house before and they probably were like, “Listen, crazy lady!” That's fine. Yeah, maybe I am crazy, but at least I did my due diligence.
Carrie Holt
And I think you bring up a good point too, though. Earlier, you were talking about how we, I think we do have to watch our kids (whether they can verbally speak or not), their body language, and how they are reacting in certain situations. And also, you don't realize how much your kids are listening to you, having those conversations in private. One thing that I, during COVID, I thought we did a pretty good job of kind of sheltering our younger kids and Toby, especially, from just some of the news or the conflict and all the things that were going on during COVID. And, you know, a couple years out when people were starting still wearing masks, and he has a couple of home nurses who still are choosing to wear masks. And he flipped, like flipped out about it, and will tell his nurse, I don't want you to wear a mask. I hate it when you wear a mask. And they've had they've had conflict and tension about it. And so finally,
I realized I needed to dial in to why this was causing him to have so many issues. And he just point blank looked at me and he goes, mom, it just reminds me about the death during COVID and I can't handle it. And I, okay, well, we've got to, you know, we need to be attuned. We've got to dig a little deeper into this and, you know, talk about some of those fears and things that were coming out.
Sara Clime
I think that's a good point. I think sometimes in like Amy, you probably like you said, you have to do it maybe after the emergency. And I think that's a really a good thing for everybody to know is that after the emergency, we all just want to be like, breezy, we're done. Let's just move on. But I think in our situations, no matter the disability, it's important afterwards to say to ask those important questions like you're saying, Carrie, like, okay, so why are you feeling that way?
Sara Clime (16:38.35)
And to try to help them work through it. Or I don't know, Amy, do you feel like having conversations after emergency situations and when it comes to behavioral issues is a good thing? I don't know, I'm just curious and I don't mean to put you on the spot.
Amy Brown
Well, not always. When I'm thinking about emergencies, we haven't yet talked about most emergencies in our life are caused by our children. Like CPS showing up, police showing up, child running away, getting suspended. I mean, if you think of an emergency as something in any emergency, whether that's you have to call an ambulance right now, or the police show up at your door, your body is flooded with stress hormones. So I'm taking the word emergency in that kind of realm. And so a lot of times the child is the cause of the emergency. And I also recognize that TJ falling or Toby need to go in the ER, he's not the cause, but they, it's because of their disability, you're going to the ER. That's a whole different thing than when it's a baby.
Sara Clime
They don’t willingly make a choice to stop breathing or to fall and take anything or go into surgery.
Amy Brown
Yeah. Right. Right.
Sara Clime
Is that what you're saying?
Amy Brown
Yes. I understand because I would never say, well, TJ caused this because he fell. That would never even come out. Right, right. But their behavior often is the cause of the police showing up, the principal calling to expel them from school. And those are emergencies in our lives because that is total stress hormone. And how do we handle this? And we need to get a new school. And CPS is investigating me now, which has happened to me and lots of the moms I know it's happened to. So in those kind of emergencies, first of all, it wouldn't it would be you're mad at your kid, I will say. But there's no point in telling them that you don't want to shame them.
They have come from trauma. And I think that's the frustrating thing about emergencies caused by behavior is that there's no like straight, this happened because of this, right? We can't say this happened because they got an infection or this happened because they have soft bones or whatever. This happened because of trauma and there's no like straight line to it. So that's frustrating. But also in the midst of those kinds of emergencies, there's a lot of shame because what's going on at home? What's, you know, so you're dealing with people who don't understand trauma.
Amy Brown (19:03.662)
And I know we all in hospital situations, you both said you've had to deal with medical professionals that don't understand your kid. It is very prevalent though in the type of kids that, you know, with behavioral issues. So, you know, I think honestly in those situations, you have to prepare yourself afterwards. I think about when our daughter ran away at nine and she was pretty good at telling stories about us that weren't true. We decided to take a picture of her. It looked kind of silly because she's this cute little nine year old girl. It's like a mugshot of her and a letter from our doctor, and this is what she does. And we took a tour of local police and we felt kind of weird because, you know, they've got a mugshot of a nine year old, which we kind of laughed about later. You have to laugh about it. Yeah. And it had like so I thought if this ever happens again, the police know that I have a child that is a risk for a low elopement, as they call it. They at least have this piece of information that this is not me because really, that's the biggest fear is they're going to our child's going to hurt somebody hurt themselves, or it's going to come back on us through a CPS investigation. So I don't know if that answered the question, but I've just been thinking a lot like, those are the kind of emergencies that we have with kids with behavioral. And we also have, which we can talk about in a little bit, predictable emergencies that happen on the regular.
Sara Clime
Yeah. Well, and before we, I definitely want to talk about that, but it just brings up a question of, do you have ways, and this is for all of us, do you have ways that you and your family navigate emergencies? Do you have some tried or trued ways, or is it just a, “We're just gonna fly by the seat of her pants.” Because sometimes I'm like, well, it's gonna come when it comes.
Carrie Holt
Are you talking about practically or like emotionally, spiritually?
Sara Clime
Both, both.
Carrie Holt
So I think, I mean, I think Amy talked about practically for her situation, like going, I think that's an awesome idea to go to the local police and have that there. So practically in our situation, I can remember just.
Carrie Holt (21:26.318)
And some of this happened, okay, so this is under the realm of having like a medically fragile child is when we left the hospital with the child on a ventilator and a lot of machines that were keeping him alive, his feeding pump, his pulse ox, oxygen, concentrator, ventilator, we had to contact the power company, you know, for power outages, if power was out in our area, they were supposed to make our house a priority. I always laughed because they would say, “We can't guarantee that your house would be a priority in this situation.” And I'm like, “Well, why are we letting you know then that we have a child on life saving devices?” It didn't make any sense. The other thing practically too, and this could help some of our listeners is we trained our local EMS people on our son. And they're not used to a trach. They're not used to a ventilator, they're not used to a G-tube, they're not used to all these things. And so we were able to, and in our community, there was, I'm not sure if there still is, but there used to be a special needs registry where you could update all of your kids' medical information. And then if your local ambulance got called and they were out on a run and the information would get transferred to the next available.
EMS who might come in the next county over a lot of our EMS runs on townships where we live, not cities. And so the medical information would then, you know, advance to the next thing. And that was really empowering for me because I felt like, and there were several times that we had to call 911 and I felt confident knowing that they at least had some familiarity with what was going on with Toby. So that's practically, I can let somebody else talk about practically and then we can talk about emotionally and spiritually too.
Sara Clime
Well, I think like I said, I have, I have this emergency plan and it's, I have it actually I have it laminated and it is in TJ's room. And anybody who I know if an emergency happens to me, or where he would need to be taken care of, it's there.
Take Heart (23:52.43)
But then it also has something of this is if he's an emergency and let's say I can't help him or I need help. It is here's what he needs sensory wise. Here's some of the equipment that he needs and here's where you can locate it. And again, I have this guide that I will be more than happy to share and I'll have a link to that in the show notes. But so it just makes me feel like, okay. I loved how you said you trained your EMS. Like that, that is great. You know, and my first thought was, what if there's turnover? Like I immediately go to all of the scenarios, right? But the point about it is, is that you've done your due diligence, you've done everything you can, and you never know if there's a turnover. They could have implemented that into theirs, or said, “Okay, so here's something we never even thought about. Here's what happens when you do a trach.” It could just be a standard part. You never know the domino effect of what your advocacy could do for your child practically. And I would like to say too, if you're listening, you're like, my gosh, people are gonna get so tired of hearing about these emergency plans or blah, blah, because I shared it with school. He's graduating now, but I shared with ministry leaders or anybody who I knew he was going to be with, because what if there was a fire at church? And again, you don't wanna be that Debbie Downer that's always looking for what happens and catastrophize everything.
But I needed to know I'd done my due diligence. Like, it happens. Nobody who's gone through that kind of emergency has ever been like, well, I thought it might happen, but I didn't. Nobody ever expects that to happen. So I just, I never feel bad explaining it to people. I'm like, “You can get irritated with me all you want to, but I need to know that I've done what I need to do.”
Carrie Holt
Yeah, and I would like to add, too, just for our listeners, I have a quick story as we, as I was preparing, when Sara sent the questions, and I think I may have talked about this before on the podcast, but when our son was just a year old, our friends were like, hey, let's go to Florida. And we were like, okay, we're gonna try to do this. We're gonna, I think it was the first time Bruce and I got away alone after Toby was home and medically fragile. So we, I thought I had crossed all my, you know, T's and got all my boxes ready.
Carrie Holt: (26:17.23)
We had trained all the nurses and all the people staying with their kids. And so we fly to Florida and we get there and I call my mom and she says, well, the power went out and you don't have any flashlights in your house and the generator doesn't have gas. And we had to call the EMT. We had to call the EMS squad because we just needed power. Like they didn't rush Toby to the hospital.
And I, the only flashlight they had that day, you guys are going to laugh. I had gone shopping the day we left to Kohl's and I had bought my kids these cars t -shirts. You remember when the movie cars came out and these little car shirts had a little tiny Lightning McQueen car on the chain and the lights, the headlights of that little key chain lit up.
Which is hilarious because in the movie they make a huge joke about how he doesn't have headlights, but these little key chains had headlights. And anyway, so long story short, everything was fine. But afterwards I beat myself up over it. And I wrote a huge post on our caring bridge about it. And I was so angry with myself, so frustrated. And the biggest part of it was I was mad because I had put all these people out.
Like I felt like I had inconvenienced my mom and put her through stress and inconvenienced our neighbor trying to get our generator started and inconvenienced the EMS people who had to come out and run the generator and get power. And they actually went and got gas for us. Like I, and I realized, first of all, that I can't always be in control and that shame and guilt didn't have a place there. And it just reminded me again you know, you don't want to say it as a cliche, but God showed me in so many ways that he was in control. Even that little tiny headlight on the key chain was something that helped them and God provided in that way. What are the chances that I would buy that that day, even though, but then I'd also maybe go back and buy flashlights and have a better emergency plan. But again, I think all that to say.
Carrie Holt: (28:42.958)
If you feel like you've gone through an emergency situation and you're berating yourself over it, just know that, you know, there are sometimes there's just not a whole lot you can do to plan for it all. You just can't. Yeah. Those what you might consider mistakes are going to be opportunities to, okay, next time it happens, like, okay, now you have 20 flashlights and every nook and cranny of your house or whatever, you know, like, and I think that's good, but like, so.
Sara Clime
Amy, I know in your situation, it's going to be vastly different. I think we don't even need to say that anymore, but I'm going to. And I definitely don't want to put you on the spot. But I think that when you when it comes to behavioral and mental emergencies or trauma, it's so different. And it's got to be so much more delicate because maybe not more delicate, but just in a different way. And I'm curious if, like, how do you or you and your husband, how do your other children, how do you help them navigate these traumatic events? You know, again, my older son knows TJ fell like in this past December and Connor's room was right underneath it and he barrels up the stairs and he goes emergency, you know, he was 23 at the time and he immediately knew, okay, what do you guys need?
And so we were just, it was just like our own little trauma team. And it was like, okay, we need this and that and this and that. And he's going and getting everything. And so that's going to be vastly different than trying to explain to your other children why the authorities have showed up. Why is your daughter threatening to hurt you or them or somebody else? So I'm not trying to put words in your mouth, but how do you navigate that?
Amy Brown
Well, I think a couple things. Number one, depending on the age. So if a child is going to rage and try to harm, you have to have a plan in place for your other kids. We adopted our son from Bulgaria. When he came home, he had a ton of raging and I had older kids and younger kids. So I had a bag by the door. I would put him in the car and wrap him in a blanket. Okay, everybody don't get on my case that he wasn't buckled because he wouldn't buckle.
Amy Brown (31:00.43)
And I would drive him to this open field and I would have a bag of water, I had my Bible, I had a journal, and I just let them go. And so that was our plan, but my other kids had to have a plan. Like when this starts happening, this child and this child goes in this room and locks the door. This kid goes over here. Everybody needs to know, just like in a fire, where would you go? When the raging is happening, here's where you go to be safe. And then you have to go back and talk about it later. The other thing that's tricky, and I've seen this with my older kids, is when CPS shows up or when we have to call them because they don't all live here anymore because we're in the ER because of self -harming or any of those situations they are dealing with the emotion of not only they're upset that this happened they're upset that I'm hurt but they're dealing with a sibling relationship that's not reciprocal so they're dealing with their own hurt and rejection from kids. You know, we talk about attachment disorder towards the mom but there's also altered attachment with everybody. So there's a whole bunch of emotions that go around that. So I've always said, you can say whatever you want to me. You can feel anything, no matter how terrible it sounds, because I feel like they need to name that hurt and how that affected them in the long run. And I just had a conversation with my oldest daughter, who's in her late 20s. And she said, she's just now dealing with some of the trauma of being disappointed that her sister is not a sister to her and there's no relationship. And, you know, when she was younger, we were dealing with crisis. But now as she's working through it, that hurt is big. So she said to me, “You know, you let us talk about it and talk about it. So I think that's why it's easier for me to talk about it with a therapist now.” So it's all that that goes into that in those kind of situations. But if you're a mom at home that has a rager, a kid that's, you know, hitting and hurting, you have to get a safe space for your other kids. And it's okay to let them go in the room and with their tablet and watch Bluey or whatever. Because you just have to keep everybody safe in that in that time. And part of keeping them safe is letting them feel what they feel and and naming their losses.
Sara Clime (33:26.766)
Yeah, absolutely. So kind of on that but how do you manage your own neurological and emotional responses in order to help your child? I know we touched on this a little bit, but I really want to kind of get into this a little bit more on the tail of what Amy just said. But in order to help your child or your other children or even other family members cope with trauma, or is it your responsibility? Maybe it's not your responsibility to help other family members cope with it. I don't know, but I'd really like to talk about that.
Sara Clime
I know for me, I focus so much on my son's physical, emotional, and mental health during trial months and emergencies, like his surgeries and hospital stays and all of that, that I don't really pay much attention to my own needs, like I said earlier, at least during the emergency. And I've learned that I deserve the grace to feel what I feel. I am human. And I've learned that by me telling my son, this makes me sad, I don't think he would mind me saying this at all because he has shared it with other people, but after his surgery, he would roll into the kitchen or wherever and he would just start bawling. And then about three days into it, he just cried and cried and cried. And he's like, “I Googled, why do you cry after surgery?” And then he went into this big discussion. So, you know, scientific discussion, he goes, “So I'm crying, it's okay.” And I said, “It doesn't matter if science says it's okay. If you are feeling that way, that's how you should feel.” And at one point, him and my husband and I, and even my mother-in-law was sitting there all crying together. And I think it was very therapeutic to do that. And I also, after the last hospital stay, I've put together what I consider my non-pregnant go bag, my disability mom go bag. You know, like when you're pregnant, you have that go bag where it's like, okay, I'm going to have this book that I read whenever he's in the nurse, whatever. I mean, you know, like, I mean, but now I have it like I have some serious food issues. And so whenever I'm in the hospital, this last time I didn't eat. I didn't eat for 24 hours. My husband finally was like, you're leaving this hospital to go get you some food, and you will not be back here for at least two hours. Like you will not come back in this room.
Sara Clime: (35:45.742)
So I was very appreciative of that, but I know we have some single moms listening that are like, well, I don't have anybody that would send me away for two hours. And you're so afraid to leave, because again, sometimes the doctors don't even know how to handle your child. But I pack this go bag. And so it seems like a lot of effort, but once a month I have my specific little meat sticks that my family, but I have that and I have some, I have my little protein bars and all of that. And I have my journal, I have an extra one in there in case I don't have it in my purse and a change of clothes. And then I have a note on it - and Carrie, I learned from you whenever, cause you spent so much time in the hospital - that my little egg crate that you can put on those horrible benches, they're not chairs, they're not beds, they're benches, they're horrible. But I have a note on it saying, “Grab the egg crate,” and it has these things that I should grab in that instance. And I found that that gives me, it just frees up my mind. And I think it also eliminates a little bit of the decision fatigue, but I've made it a little bit easier on myself now. So I think that helps.
Carrie Holt
I think for me personally, it has been, you know, through the years of just understanding what my limits are. And one of those times, Toby had a shunt failure and it was when our daughter was really little. Actually, she was an infant. She was about nine months old. And for some reason, I don't really remember why, but I ended up staying at the hospital. Well, actually, I think the reason why it was a three -day hospital stay, which sounds ridiculous, but he ended up having back -to -back brain surgeries 24 hours apart because the first one didn't fix the shunt issue and he ended up needing the same surgery the next day and then we went home the day after that, which it's like, okay, you just had brain surgery twice. How do you go home from the hospital in three days? But I stayed at the hospital and I was nursing at the time and I was pumping. And when I got home, my daughter wanted nothing to do with me. And so there was a lot of shame and guilt over that because I felt like I had neglected her. And then years later, she had some anxiety issues and things.
Take Heart (38:04.686)
And I blame myself for that because I had left her as a baby and I felt like I had put her through trauma. But I also started to understand through that process. I understood what our limits were and our limits for her and our other kids and the limits for me was that I can't be in the hospital longer than 24 to 36 hours. I have to go home because even the process of getting home after three days and having the stack of mail to go through, completely wrecked me. And it sounds ridiculous, but it did. It just, the mail, the email, catching up on school, at the time my kids were in school, the school updates and everything, leaving all that stuff for that many days and not checking in, I couldn't handle it again. So Bruce, and again, I know not all of our listeners have support that way, but if you can, find those people at church that might be able to sit in the hospital with your child and you can train them. You can say, “These are the things that they need.” We had people around the clock sitting with Toby when he was in the ICU as a baby. Now, I know there's restrictions and certain things. The hospitals are a little bit more strict now than they used to be, but you can find those people and know what your limits are personally. And I think too, it's also understanding.
I think both of you mentioned it, just the trauma that you're processing later. And I've been actually working with my counselor lately with doing some EMDR therapy around the travel emergencies that we've had with Toby. We have a trip coming up with him and I have so much anxiety about it. And the interesting thing is, the frustrating thing about it is that you feel like, you go through a traumatic situation with the TSA and you prepare and prepare and prepare. And then the next time you do that thing right. And then something else happens, which this has happened to us. And, and so I, I was laughing because the last time I was in the office with her, I was talking through every scenario of trauma we've had when we've traveled with him and he's gotten sick or we've had to call the ambulance or the TSA has completely singled him out and asked him to get up and move.
Carrie Holt (40:25.614)
Like he can't walk and I'm crying and sobbing. And she just looked at me funny and I goes, my goodness, when I say all that out loud, it sounds ridiculous that this has become my new normal. And don't you think that's true, right? Like we have this level of when you tell a normal person the stuff that you've dealt with, it's become so normal to us.
And I think what that says for us and our listeners is that we have to stop just moving through those traumatic situations and acting like life is okay. And not, not eventually when we're ready. I know a lot of times we can't do it right away, but eventually facing those losses, grieving, processing, EMDR, all the things that we need to take care of ourselves. Sorry. Sorry. That's my little soap box, but I, after 14 years of 62 surgeries and hospital stays, it is affecting my body and I have to figure it out. I have to work through it. Yeah. And I know I don't always share it because everybody looks at me like, you poor thing. I'm like, I don't need pity right now. I need you to come home and check my mail. That's what I need.
Sara Clime
Yeah. Like, you know, I because I think sometimes we Amy, I think that you said you're like, here we go. Here are the Browns again. Like you said one time, you always feel like nobody else feels like they're entitled to their negative or their trauma because you always seem to outdo other people; but that's not it. So sometimes you, I feel, at least with me, I internalize it. I just want other people to see me as Sara, not, “you're such an inspiration” or “how do you do it all?” I was in the closet crying for an hour last night. I don't do it all well. Like, but you can't share all of that or you feel like you can't. So I think that's a really, that's a really good word. Learn how to share that with other people and to name it.
So Amy, what about you?
Amy Brown
Okay, you know how like when there's an emergency and the Red Cross comes in, it gets water and all the things. Well, I always tell the moms I mentor, okay, we got to figure out what your Red Cross is because Red Cross ain't coming in. You're getting your water. I hate to break it to you. They're running the other way. Yeah, but so a couple of things that I would say, first of all, when I said earlier, a planned emergency, that would be a kid you know is going to rage most nights.
Amy Brown (42:53.582)
I always tell moms, that is very activating to your nervous system. So we need to have a pre bedtime ritual and a post tantrum ritual. Typically when there's an emergency with behavioral stuff, the first thing you do is, “What did I do wrong? How can I do it better? What therapy do they need?” And I always say we need to suspend that. When the red cross comes in, in a tornado, the first thing people are doing, they're drinking water, they're eating, they're not building, rebuilding their house. That takes a long time, right? My analogy in that is, What's your Red Cross? What calms you? What kinds of things can you do on either side of a behavioral meltdown? Save the solving for another day, the next day when you've rested and take that off of your plate. Also, you need to ask for help. Take some time. That takes time. I know it's not easy. I know that everyone just doesn't want to swoop into your house and do all the things because it's hard.
And I know I've had moms say to me over and over, I've asked and nobody wants to help me. Okay. Then what's other ways we can get help? If nobody wants to help you, maybe you're afraid to ask for a meal. Like ask for a meal then ask for somebody to pick up coffee or a prescription, but ask for help. And then I can think the other thing I would say is it's okay to feel all the feelings you're feeling, especially with behavioral kids. Like, okay, I'll tell you what an emergency for a mom like me, a snow day.
Spring break is an emergency. Like you're just like, I can't, I literally can't do a snow day. And so it's okay to say, I wish more than anything this kid was at school. And you know, you see on Instagram, people making snowmen and you're just like, I'm white knuckling my day. So it's okay to feel mad, angry, all the things you feel. We know you love your child. You're just putting a really hard situation. So giving yourself that permission.
Carrie Holt
I think it's also part of your Red Cross, if I'm gonna use that analogy. That kind of preparedness and giving yourself time. I do think we need to prepare also outside of emergencies with a list of people you could possibly call that could take your other kids. I think brainstorming when you're not exhausted, if you can find a minute when you're not exhausted.
Carrie Holt (45:12.046)
Let me know what that is. When you're the least exhausted. Start brainstorming because in the moment you're like, I am so stressed out. I don't want to call anybody or somebody offers to bring you a meal and you're like, and I I'm a girl that will say, I got it. I can do it. I will literally do 500 things at once because that's a problem of mine, apparently. So just being able to practice saying yes before you have to say yes. Yeah, I think is really important. Yeah.
Sara Clime
And that's really good. And not to harp on the whole, the checking the mail, but I just found that so funny. But like Red Cross comes in, they don't try to gather your mail. Like that's not what they're doing. They're not there, like you said, they're drinking water. I think that's a great analogy for anyone. And when you said, you know, snow days are emergencies in your house, you know, like, TJ is on the spectrum. He's very high functioning. It's, I don't have to deal with a lot of what, other parents with children with autism deal with, but he does have difficulty transitioning. And so a snow day can be traumatic in our house because the neighbors are out building snowmen. He can't go out and build a snowman. And so he's stuck in here with mom. His brother and their friends are out there. But it's different from his day. Well, when I get to go back to school, what am I doing? What is this? And so yeah, there's like all of these things where I don't think people realize that.
We are consistently stuck in that mitigation or preparedness phase. We will go through the other when the emergency happens, but I think no matter the disability, no matter the special need of your child, as caregivers, our role is a lot of the times to be in that preparedness or that mitigation phase. It is so important when you can and you are the least exhausted that you can be.
That is to say, I don't have to be in the emergency phases at this time. I can step out and just be OK. And I think it's very important to remind yourself, I am doing an excellent job. I am doing a knockout job. No one would be able to handle this like I do for my child.
Sara Clime (47:36.43)
And I know, like, sometimes it is hard to talk positive about yourself, but to be able to say, I rock at this. Like, yes, I'm stressed. And yes, it's exhausted. But I'm really doing a good job with something that nobody trained me for. Nobody gave me a manual. I am just winging it from day to day. But I'm rocking it. And so when an emergency happens, I'm going to figure that out. And I think we I feel like we could talk about this so much because there's so many different aspects of this. And maybe we'll have another conversation about it. I don't know. But I think there are so many lessons that we can learn from emergencies. But in our conversation today, my big takeaways are you can be honest with your child and your family and even yourself, but be age and cognitively and emotionally appropriate. Give everyone the space to talk and feel what they feel. Plan as much as you can, but know there will always be surprises. You will never ever get it all prepared. So I think giving yourself a lot of grace and a lot of pep talks, giving yourself a runway before and after that emergency, especially after that emergency. Don't go straight to doing all of the chores that you have. Give yourself some time to recover and learn how to step out of those emergency phases from time to time. We're not super superhuman. We do, one of you said we have limits. We have limits to what we can do. I think that was you, Carrie.
And I think I'm going to start telling myself I need to Red Cross this emergency. Like I love that analogy, Amy. I really do. And so I think what I would like our listeners at the end of that, just ask yourself how in my specific situation with my child's disability, what is the way that I can Red Cross this emergency and think through that. So what happens when emergency X happens? What do I need? What's the first thing I need to do after that? Maybe it is just I need to take a nap. If I can't, I need to find a time to leave the hospital or even if it's just take a walk around the outside of the hospital, whatever that is, really think through what your emergency plan is. And you have to be a part of that plan. Your mental and emotional and physical health has to be a part of that plan.
Sara Clime (49:57.582)
Anyway, thank you, everyone, for listening to this week's episode. Again, how do you handle emergencies? Do you have any questions, concerns of what we spoke about or do you have some suggestions? Again, we do not, we are not trying to reinvent the wheel here. We know that we only know a small sliver of this. So if you can share those with us, that would be great. We will be more than happy to share it with other people. You can email or leave us a comment on our website at www.takeheartspecialmoms.com. And if you haven't had a chance to check out our book, we talk about navigating some of the messy emotions that accompany being in the middle of trauma and misunderstood. We actually, the last chapter is navigating a crisis. And so we talk about that even in the book. But you can find that book on your favorite online retailers and you can find links to those retailers at www.takeheartspecialmoms.com/book. You can always reach out to us via email at takeheartspecialmoms@gmail.com.