Ep. 104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones

 

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Summary

Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant.

Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.

It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?

In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.

Episode Transcript

Madeline Cheney  0:00 

You know, as one mom said, she said, "don't pretend that nothing's changed." And I think that's really important. Like, we need to acknowledge that things have changed that we are different, that our relationship is going to be different. But we want you there in our lives still.

 

Hi, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today, I have a very important topic to cover with you in this solo episode, all about how we want to be supported by our family and friends. And I am so excited about this topic and a little intimidated by it if I'm honest, because I feel like it's a really huge thing. It's really important to do justice to. And because of that, I collected insight from dozens of you as listeners on Instagram. And if you don't follow me yet, and you want to have in on this kind of participation in the episode, just follow me at The underscore Rare underscore Life. I'm really active in there, that's where I get a lot of these answers and insights. And I'm so grateful for each of you for contributing, I initially was going to try to read each of your handles as I'm sharing them, which was a big ol mess. So that's gonna be at the end of the episode. So wait to hear your handle on there, for those of you whose answers I used, and all of your answers really informed this episode. So I'm just really excited to tackle this together. This episode includes some really tangible ways that we want to be supported and loved. And it's going to be overwhelming, because there's just a lot of information and a lot of ideas. So to parents who are listening right now, I encourage you to take notes of ideas that we share that pop into your head of like, okay, this is something that I would love support in or this is something that really does bother me, I need to you know, share these things with my loved ones, so that they understand this because no one can read minds. For most of us, we're the only ones in our immediate family and our circle of friends that have experienced disability in this way. And so I think it's really important to have a really open and honest conversation about this kind of thing. And so jot down ideas that you have from the episode, or you can just share this whole episode with them. I think that's a great way for family and friends to really understand kind of where we're coming from and the ways we do want to be supported. And I love the idea of this episode getting out there not just with you know, your immediate family and friends, but also just sharing it in general. I think it'd be great for society as a whole to get their ears on or their eyes on this episode, and to just be more prepared to support family and friends as that happens in their lives, that there'll be more prepared to support them as well. So to family and friends who are tuning in, because you have a loved one that has a child with a rare diagnosis or a disability or medical complexity of some kind. First of all, welcome, welcome. We're so glad that you're here. I think it's so great to picture these loved ones that really truly want to work on understanding where we're coming from and how to support us. So welcome, welcome. I think there are, you know, we need you in our lives, we need these existing relationships to stay. And you know, that's kind of for two reasons. Like first of all, of course, we love you. We have these relationships for a reason. And as we have a child with a medical complexity or disability, things get flipped on their head, right, like our whole lives change. And in a lot of ways we change. And so we get to that it's hard to be able to relate in the same ways that we did before. And we honestly won't anymore, we won't be able to have the same relationship we had before. Because so much has changed. And so much is different, not just about our lives, but about us. And, you know, as one mom said, she said, "don't pretend that nothing's changed." And I think that's really important. Like we need to acknowledge that things have changed that we are different, that our relationship is going to be different. But we want to there in our lives still. A lot of parents have expressed the hurt that they've felt as family or friends have kind of faded away, as, you know, they've had a child with medical needs. And that can be really hurtful. And we understand that a lot of times you don't know what to do or what to say. And so it may seem easier to just not say or do anything. But I guess that's kind of the main point of this whole episode is that that's absolutely not the case. We want you in our lives. And this is one way to help you kind of know what to do and what to say. And you know, as we're experiencing these huge life changes and identity changes, it's scary and we feel really alone. And so, we need you more than ever in our lives. And that kind of leads into the other reason that we need you in our lives. Because we do need support. We need help. Parenting, a medically complex or disabled child is so much, it's so much. I mean, they're amazing. And they're totally worth it and we love them. But the load is heavy, and the trauma is shattering. And we are only human. So we need your support, and we need your love more than ever. And I'll also say that, you know, you may see a lot of this trauma, and you may see a lot of this overwhelm from the outside, but I promise you, you don't know, you don't understand the extent of it. We carry a lot of this within ourselves. And a lot of it just feels too heavy or too big, or you know, just too complex to share. And if you're kind of curious about that one way for you to kind of understand that a little better. If you want to go above and beyond, listen to the other episodes of this podcast. You know, in these episodes, we don't sugarcoat. We talk about how things really are. And I feel like it's a format where people really are able to express a lot of things that we don't express to family and friends of the extent of our pain and the extent of what we've gone through. And so if you want to better understand that in a way that you don't have to respond, and you don't have to know exactly what to say, listening to these episodes, I think is a really great way and especially if you were recommended to listen to this podcast by that parent of a child with disabilities, it's probably because these episodes resonate. And so by listening to those, you can better understand where they're coming from as well. Okay, so you may be wondering, like, Okay, so in what ways can I support this person in my life? I love what one of the parents pointed out, she said, "it's extra work for caregivers to have to explain exactly what they need, or how to help them. But it's also the only way that we can get the help that we need. So it's a double bind." Again, that is why this episode exists is to kind of help convey these different things without putting the extra strain on the caregiver to figure that out. So all of that being said, before we jump in, as it is going to be for the parents listening, especially I think for the loved ones listening in, it's going to be overwhelming. And so pick a few things that you want to work on and what you want to start doing maybe a few things, you're realizing like "oh, maybe I shouldn't do that anymore," jot those down. And just start with those start with a few things don't get overwhelmed, there's going to be a million things. Also, one more thing to keep in mind: if you are listening and you feel a twinge or a bit of guilt at things that you've realized that you should have been doing or that you haven't been doing that has probably been causing pain. That's okay. We're all in this together to learn and to unlearn. And none of us are perfect. And I'm sure that most of us as parents have also made these mistakes as well. So you know, this is not coming from a pedestal. This is not saying shame on you. I hope that you can listen with self compassion and patting yourself on the back for taking the time and effort to try to learn and unlearn some stuff. And again, it just means the world to us that you are here today and you are willing to learn and kind of going back to speaking to the parents who are listening. Yes, our loved ones support is invaluable and can really help us get through tough and overwhelming situations with our children. Hence this episode. But there's also support that, you know, we desperately need that we alone can give ourselves. And that is the gift of doing inner work. I know that sounds cheesy, but I personally found so much healing from trauma and traumatic experiences with my son. For me, it was through EMDR therapy. And there's a whole episode about that, that I'll link in the show notes if you're interested. But another route for finding that inner healing and really learning tools to help yourself in dealing with these things. And not just survive, but to really thrive is through Annette Moreau coaching. One thing I love about Annette is that she's a medical mom to two sons, and she's faced the caregiver burnout and grief and trauma that so many of us can relate with only too well. After several years of that she wanted more for herself. And so for years, she dabbled in this and experimented with that until she found what really works for her and she has dedicated her life to helping other women do the same work for ourselves, which is amazing. And she has taken the tools and the things that she's learned from 13 years of figuring this out into courses to help us do the same healing and learning but in a much smoother and less time consuming way. So this is how the courses work. You learn alongside a group of five to ten women she intentionally keeps it intimate which I love in a group coaching sessions. And you also have one on one energy healing sessions with Annette herself. There are four levels, you can work through each one focusing on a different aspect of healing and tool learning that builds on the previous one. And lucky for us, this course is brand new launching at the end of November, which means you can snag your spot for a discounted price. Yay for discounts, I love them. So if you're ready to move from a place of pain, and overwhelm, and trauma and give yourself the gift of healing, I encourage you to learn more about a nets program to see if it feels right for you. You can check out the links in the show notes for more information about that. Thank you so much to Annette for being willing to help others achieve the healing that you have, and for sponsoring this hugely important episode.

 

Okay, back to our conversation about how family and friends can support us. Okay, so I divided up all the information into three main sections. Number one: maintaining the relationship. Number two: ideas for practical help. And number three: what not to say and what to say instead. So first of all, maintaining our relationship. And this section, I kind of divided it into two main points. The first one being don't ignore our child. And I think it's kind of painful to have to say that explicitly. You know, I think that can cause a lot of pain and hurt when we've felt like our child is ignored or not treated like other children may be in your lives. But at the same time, I do acknowledge that disability can be scary and intimidating, especially if you haven't really experienced it before now. So we also understand that like, sometimes it can be kind of hard to know how to navigate that. And you know, one parents suggested just to ask, to ask "how can I best connect with your child?" I love the simplicity of that, but also the power in that because as parents like we have figured out how to best connect with our children. And we're happy to explain different ways, different things that they enjoy different things that they like, to kind of help you feel less intimidated and to know where to start to connect with our child. Going along with that another parents said, "learn how to communicate with our children." That's important, right? Like ASL or you know, another type of sign language, if they're doing that or using a AAC. So those little screens that they use to communicate by selecting the pictures, or you know, other ways that non speaking children communicate, I think that's a huge part of this. And it means a lot when you take the effort to learn those things. Another mom said, "spend time with our disabled children, get to know them and share in our joy of them, they won't break if you sit with them. It's also important that I feel like you see my child that he's not invisible. So if we're meeting in a playground," or I'll add anywhere else, "please know I need it to be accessible. It's awkward if I go somewhere with family and I have to leave because it's inaccessible. It makes me feel invisible. Okay, if you don't understand what accessibility needs, that this child has asked the parents, we're happy, we're so happy when people ask us that. So we can help make those accommodations for our child. So see me, see my child, get to know my child, play with him, laugh with him, read to him, push him on the swing, really see him. That helps and supports us the most." I think this brings in a great point of like, if you have this desire to maintain our relationship with us, that's impossible to truly do if you are ignoring our child. And so you know, making the effort to overcome those uncomfortable feelings you have or you know, surrounding disability, or you know, medical devices and things like that. That's really important to us. And that goes a really long ways in keeping that relationship strong with us. So one idea that a parent had is she said, "my son's grandparents sent my son videos while we were at the hospital of them reading books." So I think like things like that, like thinking outside the box of like, what are ways that I can connect with these children? You know, while they're at the hospital, or different things like that, so great. Another mom said, "ask about my child. Even in our worst moments, this child is my pride and my joy." And I think that's so great. It's another aspect of not ignoring that child. Another parents said, "get to know about him and his diagnosis, learn how it affects our lives." Yes, their disabilities and their diagnoses are a huge part of who they are as a person and who we are as a person. So when you make the effort to learn about that, that's amazing. Most of us love talking about those things. And then one more "if your child says insensitive things to our child, don't ignore it. Use it As a moment to teach, and this is something that we hope will happen, you know, within society as a whole, but especially, you know, if it's coming from someone that we love, and that we're close to, that can be really hurtful if those things go ignored, or if you're not talking about disability in the home and teaching your children about it." Okay, so the second part of maintaining that relationship is to stay in our lives, disability addition, okay? Because, again, our lives are different now. They surround different things than they did before. But there are ways to stay present in our lives, and not in a way that ignores the disability, but in a way that embraces that. And, you know, as a way to support us and stay in our lives, with everything that's going on. So as one mom said, "keep showing up, don't drop off, because it's easier or you feel awkward, just be there." I love that. Another mom said, "invite us to things, even though it's a huge possibility, we won't go." So I think this is something that, you know, I've heard this from a lot of different parents, you know, we'll get the invitations to go do things with friends or family. And a lot of times, we can't go logistically, or we just don't have it in us to go because of everything we're going through emotionally or mentally. And a lot of us do appreciate the continued invitations, because it helps us know that you haven't forgotten about us even given up and that if we feel like we can, or we want to in the future, we have the option to accept that. But if you stop inviting us, we know that that choice is kind of taken away, and it can feel like we've been forgotten. And wto ideas with this too. I think this would be a great time to ask that friend to say, "hey, do you want me to stop inviting you to these things? Is this like really annoying that I keep inviting you even when you can't come?" And they say "oh no, keep inviting me," then you can say "is there something that I could do to make the activities more accessible for you?" Okay, and I think that would mean the world to us, like, acknowledging like, maybe it's the activities, maybe you know, if we're going to this certain venue, that's somewhere that you know, there's a lot of germs going around, and that's something that this parent can't risk. Or maybe it's too far away from home, and they can't take that much time away. But if you go somewhere more local, they could join you. Or, you know, maybe it's the timing of it, like the day of the week, or the time of that day, like maybe that's really tricky for them. And so I think making that extra effort to make things more accessible for them is going to be amazing. And it will allow you to still have that relationship and still be involved in each other's lives in that way, in a social way, which is important. And you know, for parents who are listening, you can say, "hey, is it okay if we do XYZ to make it more accessible for me." I think that'd be so great for you to bring that up. And you know, if you're getting those invitations from a friend, and you keep on having to decline, if you want to keep getting these invitations, maybe say, "I can't come but please keep inviting me Don't give up," or "I can't come to any of these things. Please stop inviting me. This is making me depressed." If that's how you feel, right? I think just that communication is really important in this. And then something that's kind of related with this is when you are texting or calling us a lot of times we don't answer. And it's not because we hate you. It's not because we don't want this relationship, it's because we are so utterly overwhelmed. And I'll speak for most parents that we do want you to keep texting us, we do want you to keep calling us and we're sorry that we can't be as attentive to those as we used to be. But each of those texts and those calls, they do mean a lot. And then that kind of leads into the other part of this and that is to check in with us. Again in a kind of a disability addition. So one mom said, "give me a call or text leading up to surgeries or operations just to talk or listen. Then ask me about a diagnosis or surgery after it happens. And then again, a month or two after that, once I've emotionally processed, it means so much." Okay, so if this sounds like overwhelming, you're like, how am I ever going to remember or know about these surgeries or operations or like these different medical events so I can, you know, check in as they're going to the appointment and check in how they're doing after that? One mom suggested just writing those down in the calendar on your phone so you can remember those things. And part of this is kind of reading between the lines that's kind of implied but not said is that you need to be in our lives enough that we're we're telling you about these things, right? Because how are you supposed to even know about this big scary appointment coming up? And I know on like, personally, the times that I have reached out to my family and put on a group chat or something, "Hey, Kimble has this big scary appointment tomorrow. I feel really uneasy about it. Please keep us in your prayers and thoughts." So all the little like, "Oh, yes, we will. We will like those are amazing." But then, you know, a few times I've gotten a text from one of my siblings the next morning as we're going to that appointment and saying "hey, I'm thinking of you today. Let me know how it goes." Like that is such a small effort. But it means so much because we feel you we feel that support. And we feel kind of this army behind us of support, which is just invaluable. I don't think there's a way to express how much that means to us, to feel you there with us as we're going through these different things to know that you're not dropping off because you don't understand what it's like. And I think this is a way to still stay connected, even though there's kind of that gap that we have of our lived experiences being really different now. And so along those lines, here is an audio submission from one mom, her handle on Instagram is Growing Juniper.

 

Growing Juniper  20:40 

One piece of advice I would give friends and family on how to support parents of children with disabilities and medical complexities, would be to recognize that just because we're not in the hospital, or going through an emergency does not mean that we don't need continued support, and that we are still experiencing trauma. We need support, even in the day to day because that's when things get really hard, not just hospital stays.

 

Madeline Cheney  21:09 

 Yes, and I love this point. A lot of times we after kind of the more emergent things like if our child was in the hospital, there's a lot of these big feelings and we have adrenaline that kind of helps us get through that and kind of survival mode. But it's when we get back home, that we often feel it even more intensely in our brains and our bodies are able to kind of process those things. And we need you to continue to support us even after, where you know, our child is discharged, certainly during hospitalizations, but afterwards as well. Okay, so now we're going to move into section number two. And that is practical help, which we definitely need. We need your like more practical help as well. Again, just because it's a lot physically and mentally and emotionally, it just takes such a toll on us. And you know, one parent, she was saying, just simply ask what help we need, which, when in doubt, I do think that's a really great thing. If you're not sure how to help to be like, how can I help? But I do think that it's even more powerful when you can have a really specific way that you want to help. And then you just jump in and do that thing. Because a lot of times, it can feel really overwhelming for us to try to know how to ask or you know, to think of a list. So having these specific, tangible ways to help is really great. And then you know, if you're a parent listening, jot down these ideas for when you do get kind of more of that general, tell me what you need questions, so you can have some really great ideas to give them for this. And again, I think this section is going to be the most overwhelming. So please get your pens out and jot down ideas as they come. But don't feel like you need to do like all these things. We don't expect you to do like all these things, they're just ideas to get you started. Okay, so the first thing is to help with our children. So one side of this is to help with our non disabled children. So here's a quote from one mom "offer to take our non disabled children if there are things that they'd like to do that might be difficult with their sibling, if they're hospitalized or ill. Or if they are avoiding germs." I think this one is so great. having another child in the family that is non disabled, just adds a whole other layer of overwhelm to our already full plates, because we needed to take care of that child. And we're aware of all the ways that their siblings disabilities affect them and kind of restrict some of the things that they can do. And so being like, "hey, I'm going to come take Wendy to the zoo for the day, because I know that that's really hard with Kimble. And I know that she would love that." And that kind of effort, especially when coming from maybe a grandparent or an aunt or an uncle or something like that is just incredible, because it's one way that we know that that child is getting part of the things that they miss out on a lot. And I just think that's a really thoughtful way to help.

 

And then the other side of this is to... this is from another parent "learn basic cares, so the caretaker can get errands ran outside the home alone," and I'll add here "or take time for much needed self care." So this is kind of acknowledging the fact that a lot of our children can't just have like, oh, let's just have a babysitter come over while we go do this thing. You know, a lot of times they do have these extra needs that need to be accommodated for sometimes you know, medical devices and just taking in consideration all the things that we are already worrying about and doing and then adding in there that a lot of us are never able to get out of the house alone or to go on a date or just to run errands that are hard to bring that child along with. I think there's a huge need for close loved ones to step in and to take care of that child if possible. And a lot of times this includes some training of how to use these medical devices are how to best take care of this child. And I think some of us still aren't at the point where we will be able to trust that because we're still so protective of our children and taking in consideration all of their medical needs. But a lot of us are, a lot of us do want that. And so you know, just asking, like, "hey, are you willing to teach me how to section your child's trach so that you can go on a date for a few hours a week?" Or you know, "how to run the feeding tube or whatever? Are you willing to show me how to do this so that I can take care of your child?" I mean, honestly, I'll maybe try to speak for everyone. That right, there might be the most helpful, practical help you could ever give. It just means so much. And I promise you that we will be the most understanding teachers, because we 100% understand how overwhelming and scary that feels at first, because we were there. And yeah, this is a big plug for that one, I think that's a really great way to support us.

 

Okay, and then number two is helping with meals and food. Because something as basic, as you know, keeping your family fed, can feel just so insurmountable. When you're in the thick of appointments and hospitalizations, and just kind of processing trauma, like something so basic as "what are we going to eat?" I think is just, it just feels so overwhelming. It's just beyond. And so this is a really great way to support your loved ones who are going through this. So when I deal with this is to say, I would love to bring you dinner this week, what time and day is best? And what dietary preferences should I be aware of? And the reason that this is I think more powerful than saying something like, "can I bring you dinner?" is that it kind of assumes that you need dinner, that it would be helpful, which I think is an absolutely great thing to assume. I think any parent would love to have dinner brought to their family, but especially in these circumstances. And so I think kind of taking the initiative like this and just being like, tell me what day and time and what dietary needs you have, it kind of takes out one of the steps of the parent needing to be like, "well, do I need dinner?" Which the answer is always yes. And it can kind of get them into planning mode of like, yes, okay, like Wednesday night would be great. We have so many appointments that day, we'll be home by five, we can't eat gluten, or like you know, whatever. I think that is a really great way to be there for that person. Another idea is to do a grocery delivery order, which I think is awesome. Again, taking in consideration of, you know, their preferences. And then another idea is gift cards for different restaurants. So one parents said about this, "I cannot tell you how many times we've DoorDash food to the Children's Hospital, or had food sent to the house late one evening after a long hospital day when the initial attention and care paid to us after our child's birth fizzled out a bit." Okay, because I think we get those things a lot more in the beginning. But then once the novelty is kind of worn off, those things kind of fizzle out, but we still need them. She said "that's when the gift cards came in handy when we still needed ongoing support and help. But the act of support was ebbing. DoorDash gift cards, Starbucks gift cards, Venmo excetera. It all matters and means something." Yes. So I mean, especially if you know this family well, like where's their favorite place to eat? What are some places that are close by the hospital? Things like that? I think so wonderful. And then another mom said, "if you live nearby, just drop in a coffee with no expectations of staying or anything, just drop it in." And I love that one. I think it's practical help, because I'm sure that coffee was appreciated in and of itself. But I think just the effort of being like, Hey, I know you're still going through all this really hard stuff. And I'm here for you is so meaningful. And I've been the recipient of this before. This one day in particular, I will never forget which I think that's something to note these things. They mean so much. But on one day in particular, we had just gotten home from the hospital, we had received devastating news about our son, I was just totally overwhelmed by theat on top of everything else that was going on. And out of the blue a friend of mine texted me and said "hey, I'm going to the store is there anything I can grab you? "Which like we weren't that close. So this was definitely out of the blue. And later she told me she just felt like she should ask me and I just started crying and I was like, I feel seen right now. I feel like someone is there for me when I feel so alone. And there was nothing we needed like eggs or milk or whatever. So I was like, yes, please bring me dried mangoes because that's like a comfort food I have and she did. She had two little kids it wasn't easy for her but she did that. And again it wasn't the mangoes, although those were wonderful and did help me kind of eat my emotions, but like it was a hug. It was love. It just meant so much to me. So just little things like that, when you think of them, do those things. And then moving on to the next part of this, and that is household tasks.

 

Again, these types of things that may seem simple are really hard for us to do when we're really overwhelmed with grief, and with appointments and all of it. So if you are close enough to the family, maybe a grandparent to that child, or you know, a sibling, or whatever, you could think "what household tasks could I come help with for an hour or so?" So those can be just really basic things like laundry, or dishes, or vacuuming, things like that. And then if you're like, I'm probably not really close enough to them to like, come into their house and do these household tasks, which like, that's pretty personal, then, you know, hiring a house cleaner or an organizer, I think that's a really great way to kind of step in and support, you know, without invading on their privacy or making them feel awkward or embarrassed about the state of their house. Because, you know, a lot of times that's something that does go to the total backburner or off the whole stove completely of like doing housework. But these things can seem so much more bleak and overwhelming when your house is a wreck. So I think that's a really awesome way to support. And then here's another idea, and this is above and beyond, but I just I love this. So she said, "the summer my daughter was born, it was the first one in our new fancy house with a beautiful yard, which we were so excited about. But we had no time or energy for yard care. We had also been under major stress since moving in and forgot about purchasing any lawn care supplies. Our coworkers stepped up. They raised funds to buy us a set of lawn care supplies, and then set up an Excel sheet scheduling people to come to our house every weekend and take care of our yard until we told them we didn't need it anymore. It made all the difference. My husband and I would come home late every day and sit outside on our freshly mowed lawn, while our daughter was in the NICU, reflecting on how life was changing. It was our safe haven at the time." Okay, I love the initiative that these co workers took to do these things. And that's just another idea of a way that you can support these families.

 

And then this last part is just miscellaneous ways that you can support it in a more practical way. So one of them is money. This mom says, "money may feel like a tacky thing. But it's the one thing we all know we truly need." True. And that's a great option. If you're not as close to the family or you don't have a whole lot of time to give just a quick check or a Venmo is a great way to kind of help that family pay hospital bills or you know if they're eating out or really anything else that comes up because a lot of these expenses do come up and they add up. And again, it's the thought behind it, right? Like wow, they took the time and their resources to help us in this way. It's really meaningful. And then another miscellaneous idea is just thoughtful gifts that keep disability in mind. This mom said, "we have had so many intentional thoughtful gifts made for our deaf-blind daughter, Sloane. And those get me every time, tactile blankets, tactile toys, Braille books, etc. It shows so many amazing signs to us as parents, things like Sloane will be supported and loved no matter what. And we have a community behind us. And these products and toys exist. And people care about us and want to put energy into Sloane's life and understanding her even when it looks different than theirs. And then another idea "buy or make a medically fragile door sign printed and laminated for the family to scare off any unnecessary visitors. These are cheap, cute and can be found on Etsy." And I just love how like these things do like instead of ignoring that child's disability, they are things that like are relevant to that. And that's a really awesome way to embrace this child and all the different aspects of them. Okay, and then the last idea for practical help. Again, this is above and beyond, but I love this idea. Help them find a therapist for themselves. So this mom said," many parents to kids with disabilities experience extremely traumatic labor's, deliveries, and hospital stays both NICU and beyond. But we just don't have the time or space for true self care and planning our own therapy appointments, physicals etc. After my mom's passing my bestie asked me to send her my insurance info and she researched therapists in the area that specialized in grief and parenting medically complex kids with disabilities. This friend of mine called each therapist interviewed them and shared bits of my story, and made an Excel list of the top five she thought I should meet with and why. This helped me tremendously. I've had this same therapist she recommended for almost three years now, through Sloane's birth, my mom's death and my husband's death. And it has helped me survive it in all big ways. My therapist still jokes about the friend that interrogated her in the most loving way, when my bestie first called her about setting up an appointment." I think this is fantastic. I've never heard of this being done before. And I think this bestie is amazing. I think this is such a great initiative to take because we do need therapy. Pretty much every single one of us we have traumatic events that we've experienced with our child. And therapy can be such a real tangible, life changing way to help and to support and the idea of doing that research and finding that therapist I think is, I mean, you know, when we need it the most, that sounds the most overwhelming and maybe undoable to us. And so, you know, acknowledging this is above and beyond and would take a lot of time and effort. I think this is such a great way to support us. So there's that idea.

 

Okay, and now we are going to head into the third and last section. And this is, don't say this, say this instead. And I think this is the section that is going to be the most likely that you will have some pretty cringy moments of like, oh, shoot, I've totally said that, or things like that. But again, a lot of us recognize that, like, so many times that, you know, these things that are hurtful, that have been said to us are said with good intentions. And so like we recognize that I think there are very few times that like truly cruel things are said. So, you know, we're grateful that you're here to learn and unlearn kind of what is really great for you to say to us and things that are less great for you to say to us. So I love what this one parent said. She said to "read the room as far as how we're doing, if I'm sad, we can be sad together. You don't have to cheer me up. If I'm feeling optimistic, encourag me." So I think that's like a great like, kind of rule of thumb of like reading the room of being like, "okay, so I'm talking to this friend, is she wanting to vent? Is she super excited about her child's doing." You know, just kind of like figuring out. And I think that goes along with any relationship, right? You probably already do that with other people. But I think that's really important to kind of like see, like, what is it they want? Or what is it that they need right now. So I think you know, because there are so many heavy and hard and traumatic things happening in our lives. Obviously, it's not all that's happening, but because there's so much of that. That might be what we're talking to you about. You know, a lot of times, I think that is what we are sharing. And if we are talking about this kind of thing, that is a big deal. I think that is something for you to be like, okay, like she really trusts me with this. Like I'm a safe place for her for her to be talking about some really hard stuff. So I'm going to kind of like walk through a few kind of like, you know how to take the hard stuff 101 kind of the basics of this. So let's just say, let's just set the scene, let's just say that, you know, we're unloading on you, we're sharing our pain, or overwhelm or something scary or traumatizing. And you're like, "Man, I want to help her feel better." So number one, do not look for and try to point out silver linings or to find a positive spin on what we're saying. I know that often feels counterintuitive, because you want to cheer us up. But that actually just feels hurtful and dismissive of what we're sharing with you. So some examples that I got from parents of things not to say, are these, "She looks fine. Just stay positive. It could be worse. It's all going to be okay." And then anything referencing God's plan, God will only give you what you can handle, etc. But I will say for this, but I know this is comforting for some people. So it's just a good one to ask about, like, hey, how do you feel about this phrase? And if they say they hate it, don't use it. If they say love it, go ahead. And then, "maybe he'll grow out of it. She doesn't look sick. She's disabled. But she looks so cute. All kids do that. Have you tried...? It's not that bad because of... at least... you're supermom, I can never do what you do." So those are some examples of things that on the outside, like you're like, Well, why are those bad? Like those seem like really nice, cheery things to say but I'm the bottom line with all of them is that they feel minimizing to what we're going through. And we want you to create space for those things. We want you to validate what we're talking about. And I'll give some examples of that in just a little bit. And I just love what this one has to say. And this is actually an audio submission from again, growing juniper.

 

Growing Juniper  39:55 

One thing I would really encourage people to avoid when supporting friends and family members with medically complex kids, is to kind of try and lighten the mood by downplaying some of what they're going through, especially when comparing to not medically complex kids. So for example, if someone is saying that it's really difficult going to all these physical therapies and that their child is unable to stand or walk independently, it doesn't help. When someone then replies, "oh, gosh, sometimes I wish that my child didn't walk, because now I'm having to chase them all over the house." Or if you are discussing how your child is never going to be able to use the potty, he's always going to need a diaper, and saying, "oh, gosh, sometimes that would be so much easier." The same goes with a G tube of going, "Oh, sometimes I wish my child had a G tube because they won't eat anything." We get where it's coming from, you're trying to kind of put a silver lining around a situation, that's really difficult, but it never makes any of us feel better.

 

Madeline Cheney  41:09 

Okay, I feel like this is one that is probably something that's done really often. So if you're listening and you're like crap, I've totally done that. That's okay, just learn about it, maybe shift in how you respond to things like that. But I think like pretty much anytime you're trying to like cheer someone up and make them feel like it's not that bad. That's exactly what you're doing is you're trying to show them that that's not that bad. But it is bad. Like these are things that are really, a really big deal to us. And they're just a really big deal period. And so I think it's not helpful to feel like, it's not a big deal to you, or that it shouldn't be to us. And then this is from another parent, I think she has some really good points. She said, "don't say he's here for a reason, especially as a response to learning about a child's disabilities. So basically, you're saying they're disabled for a reason. I do not believe my son was born with a life limiting painful genetic condition for some greater reason. I think his life is incredibly valuable. And we are so grateful to have him. And his disabilities have given us a perspective on life we could never have had otherwise, he's beautiful and loved, like all children are disabled or not. But he isn't here and enduring suffering for the reason of teaching others. I hope this makes sense. Always feel so weird and guilty writing these things out." So I think that's something that a lot of us parents have felt before, you know, to say like, "oh, like, there's a reason that he has this." It's like, well, I can't think of a reason for my child to be in pain or to die or to be suffering. And I think this is another one, it's a little finessed or like, yes, like, depending on your background, as far as your faith beliefs and things like that might be something that we tell ourselves might say, he's here for a reason. But I think a lot of times when it comes from someone else, that can be extra off putting and just feel hurtful. And so I think, you know, you could always ask, like, "hey, do you feel okay, when I say he's here for a reason?" but I think a general rule of thumb is like, just don't say that kind of thing. And then another mom said, "Don't compare us to other people or bring up other people's struggles." And I think, especially in the context of when it's like, oh, well, you know, this person has it worse, or, oh, this person totally understands, because her son had a cavity. And it was really traumatic like, because a lot of times when you're comparing, it either feels like you're minimizing our situation, either by comparing us to really minimal things. And you're like, that's not the same thing at all. Or by saying, well, this person has it worse. So you're not allowed to struggle with this. And that doesn't feel good for anyone. So I think, you know, when this parent has shared now, we know what not to say, I think it's really great to ask if they want advice, or a listening ear. Right. And and this is just a basic communications tactic in general, but I think this is a really great way to use this. So if they say, "let's troubleshoot," go ahead and do that. If they say "I want a listening ear," then that's the time to validate. And so some phrases that you might use, like, you know, cause I think it's nice to have like a few of these phrases up your sleeve so that when someone is sharing this kind of stuff, and it's hard to know what to even say to this kind of thing. I think it's nice to have a few of these phrases up your sleeve to be like, I want to validate this person. I'm not even sure exactly how. So here are some ideas. "Wow, that makes so much sense. Just when I really like I would probably feel the same way. I want to listen to what you'd like to share. I can only imagine how this feels, but I'm here to sit in it with you. You're strong for your child. Let me be strong for you. I'm sorry, this is hard." And obviously there are way more phrases you can use. But those are some ideas to get you started. And then here is one mom's thoughts on this. She said "we just got my son's diagnosis and I've started telling our family and friends and I feel like we don't get enough acknowledgment of our feelings. Like, please acknowledge that this is hard and requires a lot of strength. Please tell me I'm a good parent. It never hurts to say you love us and our thinking about us. Listen without judgment. And without offering advice. I'm sorry, this is hard is perfect, you don't need any but or positive spin on it." And I think that just kind of goes back to the whole, like, we don't want you to put a positive spin on these things, but especially when it's like just sucky things like they're just are really hard. So don't try to put a positive spin on it. But just acknowledging that it's hard for us and listening, just listening is so meaningful. The more that that happens, you know, the more that we will open, "I think honestly, the main thing is to listen and hear us. Often you can't take away the worry or the grief at the beginning. But telling me not to worry, or it could be worse makes me not say anything. So listen attentively, it's what's needed." So kind of reiterating that point. Okay, so now we've established, don't find the silver linings, validate what we're talking about. And then just like a few more other points about, you know, when we're talking to you about our children, or when you want to talk to us about our children, you know, think before you ask a question. So this mom said, "whatever question you want to ask, ask yourself first, is this something I would want to be questioned about my own child? I say this because I know a lot of family members and friends are genuinely curious. But I think that if people took a minute to look inward and put themselves in our positions, it would really change the type of questions." And I think that's a really good thing to keep in mind. Because a lot of times, we will get questions that feel invasive or hurtful, or they're kind of sending a message that you probably don't mean to send. But I think, you know, questions are a really important thing to be sensitive of. And I think a lot of times, we do want to talk about her kids. So I don't think it's not like don't ever ask us questions, just ask yourself if you would be okay, if someone asked you that type of thing about your own child. Another example of this is shared by Anna on audio recording.

 

Anna  47:09 

By far the most common question that I get about my son is when is this trach going to be out? I understand if you are a close family member or friend, and you are invested in my life and in my son's life, I'm happy to answer that question for you. But it's been very surprising to see that even after having had that conversation, that question continues to come up over and over again. It's a really discouraging question. And it makes me feel kind of isolated and feel like people aren't actually seeing me for who I am and my son for who he is, you're just kind of seeing us as a problem to be fixed. And okay, when is everything going to go back to normal. And I understand that they are not faced with the reality of needing to have radical acceptance. But instead, I would love for them to ask what kind of things he's working on in therapy, or the words he's learning in  sign language. Those things help me feel like others are seeing my son for who he is. And I wish that that could come up more often.

 

Madeline Cheney  48:11 

So again, I think this is just a great example of like, I think sometimes these questions that feel innocent can actually send a message that you're not meaning to send. And so just think about those things, I would say. And then secondly, think about your jokes before you say them. You know, many parents have been hurt by jokes whose puns center on our children's disabilities. And you know, one parent shared an example of this "never make a joke about passing on good or bad genes." So I think that's really important. I think, basically, if it's a joke about our children's disabilities, just don't say it. And, you know, you may even hear us making jokes about it, you know, using dark humor as a way to kind of cope with these things and make it lighter, but I think we can do that. But if it's coming from someone else that sometimes feels kind of offensive or cringy. My dad passed away from brain cancer a few years ago, and dark humor is how my siblings and I have kind of dealt with it. And so we'll make these horrible jokes about it. And we'll laugh and we're like, "oh, my gosh, we're the worst for saying that." But like, if someone else made those jokes, I think that'd be just like super weird and offensive. So I think, kind of thinking about that way. Like, you know, would you want these types of jokes being made about something that is really sensitive and close to your heart and has a lot of emotions tangled up with it? And probably wouldn't.

 

And then lastly, with advice. So I've gotten some mixed feedback on this from parents. Some that do like advice, some that don't, a lot that don't, but I think it's best to ask, Do you want my advice on this? before offering ideas about you know, their different diagnoses or whatever they're, you know, struggling with and I think it's normal and awesome that you want to fix these things for us and you want to help and that can seem like a great way to do it. But most parents hate it. But if you just ask, "Do you want my feedback on this? Or you want my advice?" I think that is a really great way to know and to gauge that. And if they say, "Please don't give me advice" I think respect that, as one mom said, "assume I've researched five times more than you have. I'm the expert on my child, and I'm not dumb." There you go. So you know, if you have like an essential oil, you think, well, here are kids like genetic condition, I think that's something just keep to yourself. But if you have an essential oil that might help our kids sleep better, or whatever, you know, go ahead and like, test those waters first be like, Hey, do you want an idea about your child's sleep habits? Before you know offering that to us? Because I think a lot of times, we're gonna say, maybe not. But sometimes we do want those things. So I think, you know, just keeping that communication open, I think that's kind of like, the recurring theme is like, just be honest with each other. And, you know, ask if you're not sure if something is offensive, or helpful, or whatever. And like, we know, we know that you want to help, but I just think we get a lot of this unsolicited advice from a lot of different places, and it can get old really fast. So I think it can also start to feel like our child is a problem to be fixed, which also just comes from going to the hospital all the time, or therapies or whatever. Like, that's kind of this theme that we have anyway. And that can feel really hard to feel that way. But tons of advice from all these people can make it feel even more that way. You know, like, hey, let's figure out how to fix your kid. So, something to keep in mind. I think that you know, just being sincere in all of this is really important. And like you when you accidentally say the wrong things, that's okay. Like, we want you to just, we want you to stay in our lives, we want you to keep trying, I think that effort is really what it comes down to. If you're like, well, whatever, don't be so sensitive, I'm just gonna say what I want, that might become a toxic relationship, we just can't keep in our lives. And we don't want that to happen. Like we want you in our lives. So as long as you're making a genuine effort, please like we really do want you to remain. And I love this thing that this mom said. She said, "The worst is seeing people checkout and drift away. People say a lot of things and shock and processing. And I think there's grace for that. The worst for me is when they say little to nothing consistently, and pretend we don't have this ginormous grief, stress and heartache. They check out but guess what it's happening and we can't check out too. The best is when they sit in it. They take it in, and they want to meet you in that place. They come back to keep making sure they are consistently with you. It's the heart, intention, and the effort that matters to me." And I think that goes for all of us like it's the heart and intention and effort. It really does. We don't need these like, superhero like family members and friends of like jumping in and doing everything for us or like saying the exact right things. But we do want someone who's making the effort. And that shows that you still want us in your lives, even though our lives are very different now in our relationship is going to look different now. And just to kind of conclude, you know, this whole episode, again, we're so grateful that you know, you have made the effort to listen and to, you know, make an effort to understand where we're coming from on these things. And my gosh, we are so grateful that you are in our lives. And it just means the world to have the support. And to know that you're here as we're going through things that are changing our identity, right is changing who we are. And it, it just means so much that you are consistently there for us and that you still desire these relationships with us. And we want you to be here with us through all of it, and we love you.

 

If this episode resonated with you, please help us by sharing it, you can send a link to the episode directly to someone you think would love or benefit from it. Or you can hop on social media to share it there. So to make that easier, you can follow me on Instagram at The_Rare_Life and on Facebook. And that page is called The Rare Life podcast. There are easy ways to share on there. And I just think it'd be so great if this episode just explodes and we have tons of people listening to it and that society as a whole just becomes a little bit more supportive and like more equipped to help us through these things. You will find links to connect there on social media in the show notes as well as links to related episodes. And for more ways to learn about the coaching program that I explained at the beginning. Join us next week for a story episode with Brianna Christian, whose three year old Isaac was diagnosed with a rare condition after months of being brushed off by medical professionals. Don't miss it.

 

Okay, keep listening if you want to hear me make a total fool of myself as I thank the parents who contributed to this episode by trying to pronounce their Instagram handles. I really mean it when I say thank you pretty much everything in this episode came from thoughts that each of you expressed and I'm so grateful for that. So a huge thank you to: @jilllatimer294, @triciajeanb, Victoria Shaver, @itsdg, @fear_bird, Mariane Martinez D, @chloerose1127, @bobbigirl09, @grace.bongiovanni, @sunflowers_sea, @dianaphazely, Rebecca, @GrowingJuniper Juliana Morasse, Rachel Sullivan,  @libby.shidel, @maddisonjward, Siobhan and Jamie, @mrs_katch, @lachelitita, @oconnor_strong, @ash.garrison, @Kariandsloan, @howlinghive, @rachaelmcarlucci, Anna Crab, @jenangarita, @the_advocating_mom, @freyasluckyarm, @mrs.mabridges, @katiebpeterson, @becky812, Hannah Elizabeth, Rachel Sullivan, Sarah Harris, @linavilela, @kate.rolfes, @kate_mcgregor_, @mrs_read_15, @donotfeedwildlife, and @cathsheahoff. Thank you. Thank you. See you guys next time.

 

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Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-10-9/295951222-22050-1-4c66a0f45d1b8.m4a

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68: Dipping My Toes into Educational Advocacy

 

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