Greatest Hits - Self-Care: Mental Wellness for Parents + Caregivers

This summer, we're revisiting some of Hina and Marla's greatest hits from the first 10 seasons of The LowDOWN. On the Season 10 finale of The LowDOWN: A Down Syndrome Podcast, Dr. Susan Fawcett and a panel of caregivers give us the lowdown on mental wellness for parents and caregivers.

Transcript

The Lowdown podcast is recorded from the shared unceded territory of the Coast Salish peoples, specifically the Coquitlam, Tsleil-Waututh, Squamish and Musqueam nations. We closed the tenth season of The Lowdown with acknowledgement and humility towards the Coast Salish peoples who cared for the land since time immemorial. Today, on The Lowdown podcast, Doctor Susan Fawcett and a panel of caregivers gives us a lowdown on mental wellness for parents and caregivers. Over to you. Hey, Marla. This episode is brought to you by our season ten sponsor, the Ames Family Foundation. Hi, everyone, and welcome back to The Lowdown Podcast to our season finale episode. My name is Hina and joined by me is my wonderful co-host, Marla. Hi, Marla. Hello. How are you doing? I'm doing very well. I'm very excited for this topic. This is a great episode to end our tenth season, so congratulations. Um, so yeah, today's episode focuses on a crucially important topic, which is mental wellness for parents and caregivers. We cannot overestimate the stress and emotional toll it can take for families taking care of their children with disabilities, and the importance of having a mental wellness routine or practice cannot be overstated either. We are fortunate enough to have a wonderful panel of guests today, including two parents and a professional, to help us guide this conversation. So our first parent joining us today is Cheryl. She lives in Port Coquitlam with her husband and three kids. Stephen is eighteen with down syndrome and autism. Ryan is sixteen and Sarah is thirteen and has a diagnosis of triple X syndrome. I. She also has an older son who does not live with them and he is thirty. Cheryl describes herself as a stay at home lady and likes most of what she does. Our second parent joining us today is Angela. Angela is the primary caregiver to two children with special needs. Maggie is eleven and has autism and ADHD and struggles a lot with anxiety. And Eva is nine and has t21 and autism and many other medical conditions. And then our special professional guest joining us. You all know her well as Doctor Susan Fawcett, who is the director of Therapy and Behavior and Family Support at the. Susan has been working with many teens and adults with developmental disabilities and down syndrome who struggle with depression and anxiety. And she's also working alongside parents and caregivers in helping support their mental health. So welcome to The Lowdown, Cheryl, Angela, and Susan, thank you so much for joining us today. Thank you. It's great to be here. Very excited to have you. Yeah, we're really looking forward to it. Um, in the grand tradition of our podcast, we're going to start with some secret questions, um, which are just fun so that people know you as a person first. So the first question I have for you here, I'll start with you, Angela, is if you had to give a lecture for an hour with no preparation, what kind of topic would you choose? Susan's behavior program. Oh, wow. Okay. That was not intended to be an ad because I know it very well. She knows it very well. Especially the slides with cake on them. Oh, yeah. Sure. Yeah. Yes. I like those too. Um, no, but I do like behavior is, uh, really at the heart of, you know, both my children and a lot of the way we interact with the world. So yeah, okay, that's a great answer. And I did not see that one coming. Um, and Cheryl, what would you choose? I'd probably choose something to, uh, encourage people, uh, like to build them up. Um, yeah, that's probably what I would probably. That's what we most eat. It's just that we're doing a good job of whatever we're at, and you know that our kids and our life doesn't define us. It's, you know, what we believe and what we actually put into action. So, yeah, that's wonderful. That is I would attend both of those. I was going to say, sign me up. I would say, Susan, what would you do? I mean, my professional answer is the topic we're talking about today. Yeah. Because it's like very, very, very near and dear to my heart. Um, but the non-professional answer would probably be either pugs or wine, I knew it. Okay. Why does it have to be either? I mean, I guess it could be both. They don't go together that well. But, you know, we could. We could try. It's so funny. Uh, and the second question here is if you could eat only one thing for the rest of your life, what would it be? Oh. Susan's having a hard time. Let's start with Cheryl. Lindt chocolate. Oh. Good choice, good choice. Good stuff. Angela. Yeah, we're here to be honest. Right. Mhm. Okay. It's Taco Bell. Okay. Yeah. Lots of flavor. Right? Yeah. Make a run for the border. Yeah. Oh, no. Okay. Okay. I'm just going to go with what first popped into my head, which is chepino. Oh, I love a good chepino. Seafood tomatoey. Again, there's wine in there. You know, it's good. No pugs. Pugs? No pugs. Uh, and finally, if you had one, which not everybody does, but did you have a role model growing up and if so, who was that? Oh, that's a nice question. It's been so long. I'm so old. I'm. Do you want me to start? I sure do, yeah. I'm going to go with my auntie. Karen was my role model because she was just very funny and warm and loving, but also kind of stressy and open about her stress. Um, and for dance purposes. Also, she was my because she was my teacher and yeah, that sort of thing. She was a professional ballerina. Um, okay. I think I would say my mum, uh, you know, raising two, two daughters, um, I just really admired her, her just her dedication, but always her ability just to have fun and, um, you know, treat people the way she would want to be treated. Like she was just always so thoughtful. And it didn't matter whether we didn't. It didn't have enough food or whatever. She'd always invite people over. Like, there was always just that, hey, we're all in this together. So kindness? I would think so. Yeah. Yeah, yeah. Um, yeah. For me, I think that there I've been lucky to be around a variety of women from a previous generation who I just knew I wanted to be like them. And so I enjoyed spending time with them to sort of learn from them, emulate. And both in my family and in my found family. So not one answer. Just great women that I've been surrounded by. That is lovely. A lot of women role models, which I think is really wonderful. Um, well, that's that's the end of the secret questions. Let's dive into the topic here of parental mental health, which is so crucial. Um, Let's set some backgrounders. So, Susan, can you describe the importance of establishing a good mental health routine and why we would do this and what it could look like? Yeah, definitely. So, um, I think the, the one of the ways I like to think about this is to kind of have like the analogy of, um, that we do all sorts of things to take care of our physical bodies. Right? And to prevent disease. Um, well, at least we should do those things. I mean, we don't always do them. Um, but we can think of taking care of our brains and our mental health in the same way. Right. So you really want to have, like, a preventative kind of mindset around it. And I think, you know, having a routine based way of doing that is the best way to keep doing it over time. And if you can do these kind of like, little things across different kinds of, you know, like self-care and keeping your selves healthy with respect to food and exercise and varied in numerous social opportunities and getting lots of social support. A little bit of most of those on most days is what's going to keep parents, I think, resilient, right? It doesn't have to be these big giant like, I'm going to go take my dog for a walk for three hours in the forest, right? That's not doable for most parents. Um, and the other reason why prevention is really important, um, in terms of self-care and having a good mental wellness routine is because if you try to force yourself to relax when you are at a nine or a ten on the stress scale, it's not going to work, right. You're actually probably going to make yourself more stressed, which is obviously not what we're trying to do. Um, the other piece of this is that, um, for parents mental wellness routine is not just about kind of self-care activities, but also about, um, unhelpful thinking patterns. Right. And how I, you know, I've worked here for a long time and I've talked to loads of parents and lots of parents verbalize things that, that they're thinking about inadvertently or directly, that basically fall definitively into the bucket of they're beating themselves up. Right. So there's a lot of guilt and shame. There's lots of thoughts that come from that kind of core belief of, I'm not good enough, or I'm not doing things well enough for my kid. And so I think in addition to what we think of as self-care or like adding things into your routine, watching parents watching how they talk to themselves is a really important part of kind of like your day to day mental wellness practice. Um, okay, so I have a question. What does wellness look like? Like what is it because we're talking about it today. but is like where's the end picture? What's the beautiful wellness? Like, are we just happy every day? Is there like a test we can take to see how well we're doing on the wellness? Um, she wants to tell me. I want an answer. I want an a gold star. Well, I mean, yes, there are tests you can take. There's like a parenting stress index, which you may or may not do well on. Um, and get an A on. Um, but I don't think I'm glad you asked that because I don't think it's it's not reasonable for anybody to feel happy every day. That's just we need to stop expecting that of ourselves, right? Like, everybody needs to stop expecting that of ourselves. But there's so much out there about, you know, how you can have a picture perfect life. And this is where I get on my social media, anti-social media. Right. Which is so detrimental Mental in this regard, right? Because it makes us think that we can have these super happy, perfect lives all the time, and especially for for you. I mean, I follow lots of people, um, who have, you know, um, kids with down syndrome and they are posting these beautiful pictures. But I know those families and I know it doesn't look like that every day. And so I'm, I'm just really glad that you brought that up, Angela, because I don't think that's what we should be striving for. For sure. Not, um, any of us. And then for parents, I think that's really different. I'm going to throw the question back to you. Like, what does that look like for you? When do you feel your your best? Or at least when do you feel like you're managing pretty well? Maybe we should phrase it that way, right? Yeah. Well, sometimes managing well just is not an option for me for extended periods of time even. And, um, it's just that it is what it is. It's kind of where I'm at with it. And, yeah, I want to be, like, mentally well, or. I don't even know what that means. Like, um. But happy. But I am happy. It's okay. Um. I'm grateful all the time. Life is hard, but it's not as hard as somebody else. And, um, I don't know, I guess I just it's made me, like, worry when we talk about wellness is that it's going to feel like it's another thing that parents got to do a checklist, right? A destination that you have to get to somehow. Yeah. Yeah. Do your speech therapy, do your OT practice, do your reading, then do your wellness work. Yeah. Like, um, I just I don't know, I think I don't know, to me, it's just, like, having more fun in life. Yeah. Um, more fun in life. Yeah. And, and I think, you know, as long as we're. Here. This is kind of a this is kind of tough, but I almost want to say it's like you being the fact that you've said, you know, I can't do it all the time as long as you're not permanently in a state of burnout. Right? Which means that now you are sad all the time. You can no longer find joy in any parenting task. I mean, I am not going to tell you that you should find joy in every parenting task. That's just ridiculous. But if you're not finding any joy across any of those things, if you are constantly up at night worrying about your kid, if you are like in that kind of space permanently or you can't get out of it, then at that point you're not well, right? So that's that's sort of I think that's a that's the most gentle way I can frame it. And at that point you, you, you got to get some outside help. Right. Like, I don't know, I've been in that place for a long time, for extended periods of time, for circumstances beyond my control. Really. And I guess just what I want to express is that sometimes it's like, okay to be unwell like that you can be unwell, and that can also be okay because any work required of you to move out of unwell is beyond what you have capacity for at that time. You know, I don't think, you know, there's just been these times in my life where that's I've got everything I can handle and I'm exactly as you describe and I'm aware of it, but there's really not really anything I can do about it right now. So. But I have to just give it time. I think we need to kind of get our, our selves out of that mentality of like constantly having to fix everything. Right, like it's okay for a week where I'm going to feel down, I'm going to be really stressed and I'm anxious and I'm just going to live in that space. And then hopefully after that week is over, I can reevaluate. If I need a couple more days. I'm going to be in my fields for those two days because I think I agree with you. I think the pressure of having to be like, oh, I'm feeling anxious. I should do something about it right now, unless you're in that maybe that very heightened physical state that you, you know, like that, um, in that moment, you're in a crisis point and physically you need to get yourself out of it. That's a different thing. But you can have days where you're like, you know what? I'm just going to be sad. I'm going to be anxious. I'm going to do the best that I can, because I think the pressure that we put on ourselves to get out of that state can sometimes make it worse. Yeah, yeah, I worry about well, good. Unwell. Bad. Yeah. Like this, this idea. Yeah. And I worry that that's a pervasive thought that might be unhelpful. I would definitely urge people to not think about it that way. Exactly. Right. Like that's that is not going to be helpful to anybody for sure. Yeah. And you're right. It is out there everywhere. Susan's absolutely right. Like social media is just like, oh like there's so many podcasts about like Mental Wellness and Five Steps to Happiness. Or it's not that it's like a multi-billion dollar industry, right? Like speakers that you go to to hear and they help life coaches and all that. And I mean, if it helps you, that's great. But it's you're absolutely right. It's an unrealistic portrayal of like, so what I, I think it's important to say is that there are constructs that are pushing us to buy into the concept of wellness as something we need to achieve. And as parents of kids with down syndrome, we have to be really careful with that because it's unrealistic. Yeah. And if we're not going to get there, it's not because something's wrong with you at all. No. And that's certainly I mean, that's not the case for any parent. But like because I know you fairly well, like, that's certainly not the case with you or or you Cheryl. Right. You're both I think both of you have this ability to be very open about things, to be realistic, to be practical, to see the light side of things, even when things are very, very, very dark. right? And and those things, those aspects of your personality are keeping you well to a degree. Does that make sense? Yeah, absolutely. Yeah, that's a great way to put it. And I think I can just hear people, um, over the internet saying like, yeah, but to a lot of this, which is tricky. And I think there are so many more barriers and things in the way when you have kids with different needs or disabilities. So I want to hear from both of you about what some of those could look like, because you're going to speak to what everybody's feeling, even though we know like we know what we should do. And then there's the yeah, but that just comes from within. Um, so can we start with you, Cheryl? What do you think? What are some of the barriers I could always think of? Yeah. But, um, you know, with with my child being non-verbal and, uh, you know, it's hard to understand. He's got down syndrome, he's got autism, you know? What does he want? He doesn't communicate well. So. no. Nobody possibly could look after him. I'm the only one. And so you begin that resentment. You. Yeah. You just start to think, well, no one can look after him. I'm the only one. And so then, you know, I've come off of not having time away with my husband for twelve years. Like we've just went on a holiday this past summer. My sister gracefully paid for us. We went to Belgium. We were gone for thirteen days. Amazing. He survived. And what it made me realize is that I've been really sick all that time. Like I really have been. I've been in a frying pan cooking, thinking I'm the only one that can do it. But coming back and realizing that man like, have I been selling him short? I think that's what it is. If you look after yourself mentally, you you're doing your, your your kids that like you're you're capable. I think everybody is is, you know, gifted with certain qualities. The kids that they have in their, in their realm is who they're supposed to be looking after to. But if you're not mentally looking after yourself or in that good space, you can't give them what those giftings that you have. So it is really important. Like, and you were talking about those little things that we can do that doesn't have to be a walk. But if I get up in the morning and get ready first before I get my kids ready, that's a little something. Because now I've gotten ready first. I've taken care of myself first. Today I brush my teeth, I'm all ready to go, and then I can go wake them up. I'm ready to go, as opposed to feeling resentment about having to care for them. And so yeah, I think it's very important just putting just little things that make you feel like because you were I was Cheryl Ann before I became a wife or a mother or a daughter, right? Like I had a life and I am a person. And I'm not defined by my kids. So it's changing that we are good. And if we do that, we just mimic that for our kids. Like, my other kids can say, oh, look, mom's taking care of herself. She's just walked away from this. So we're setting them up also. So and I think when you're, as you describe, when you're in the thick of everything, when you have so many things going on, it's hard to remove yourself and be like, hold on, what do I need? Because you're on a daily basis in survival mode all the time. So you're just like, and it's, I'm so happy that you said that you have to give yourself permission to remove yourself from it so you can get a better view of how things are and what you can do. So but even if you stop and think, if I had, you came along to me, my really good girlfriend, and she was feeling that way, what would I do? I'm going to encourage them and I'm going to tell them those same things. Why wouldn't you take your own advice? Why not? Yeah. That right. That thing called self-compassion. I've done, like, a whole course on it. I'm still not sure what it is like. It's really. It's so weird how we hold ourselves to, weirdly, some different standard than we would a friend like that. I can understand for them. But for me, no, I have to do all the things and be all the things all the time. Yeah, and that would be maybe an example of those unhelpful thoughts. Yeah. Okay. Like I think yeah. Mentally the physical part comes after if you can continue on getting that mental part and and be okay. Um, then the physical part comes after, I mean because the other part was Stephen, is that we go through we would go through days with no sleep, like, how do you function? Like my son would say, mom, you shouldn't be driving me to school. This is the third day you've had no sleep. And I'm like, yeah, well, we got to go there. Like, that's stupid. Like, I really should be saying, hey, Mary, across the street, can you come and give me a hand? because she would love to help. Just like I would love to help if somebody asked me the same, right? So, and I think one of the, one of the big barriers that we see a lot here is what you mentioned, Cheryl, which is around communication and feeling the need to be your child's interpreter, whether it's their speech and language or their body language or their subtle gestures and like you understand them like no one will, but at the same time, you can give somebody else a crash course, and you can also lighten your load in other areas by getting someone to help with another child, or taking care of some of those day to day things. It is really easy to feel like you have the sole emotional and caregiving burden for your child, and that you can't take on help. Angela, I'm wondering if you can speak to some other barriers that you feel, um, make people say that like, yeah, but not me kind of thing. Yeah, well, time and money. That's time. It's just very obvious. Um, but, like, I've learned a lot about the sympathetic and parasympathetic nervous systems and, um, how even, you know, a five minute practice of, um, taking a time out of just, like, listening to your breath or whatever, like putting on smelly hand cream and just taking a minute like that, you like, you know. Mhm. Um, these really short things are drops in a bucket that add up over time. Um, and yeah, money is another thing because like a lot of things that we do to, to uh, pursue uh respite cost, cost money. Mhm. But I don't think that wellness is contingent on, on having that money. I think that there's a lot of ideas, Yes. That we have that aren't that don't that don't cost anything. But, um, you know, it's funny because one of the barriers also for me anyway, and I think, like Cheryl just said, is sleep. And, you know, when Susan was talking about her rundown of how to keep your body. Well, I had to go. I had to go. Sleep is missing. Sleep is so huge. Like, because sleep is health and sleep is wellness. And I mean, how many times have I been to a workshop on the importance of sleep for children with down syndrome? Probably a lot. And we do a workshop on the importance of sleep for caregivers of children with down syndrome. Right. And so if you, um, because if children are waking in the night, parents are waking in the night. And when you don't have that sleep, um, very, very quickly your brain starts to lose its functioning. And yeah, Cheryl knows exactly what I'm talking about because we've been there so many times. So sleep becomes a barrier to in a big way. Yeah. So. Well, barrier to even see, uh, how you can help yourself or how you can get through anything. You're you're just you're not thinking. And so you're going from, you know, a couple of days to. Okay, so now he's sleeping better, but you haven't taken the time to sleep, so you just think you can. So now it's it's days. It's weeks. You can no longer see any. Uh, any like your tunnel is not lit up anymore. There is no there is no hope. It's doom and gloom. I there's nothing I can do. This is just the way it is, you know, and there's so many other ways around outside of our house that we already feel that way, whether it's in school or wherever our kids are. Um, there's. You can't find any light in that. So, yeah, sleep is a huge one. Yeah. And of course, while you're not sleeping and you're sleep deprived, then other things stack up and just get worse because you can't do the things that you would regularly do, and then you're tired, and then they get bigger, and then you're more tired and they get even bigger. And if people are listening and wondering, how could I help a family that I know, check in and maybe see if you can get them a nap or, you know, help out around the house with those things that are stacking up for a family. And my thought comes with that. Sometimes people are like, well, how can I help? So sometimes coming from. If somebody came to me and say, well, how can I help you? And I'm like, uh, I don't know. I'm tired for work. Don't don't ask, don't ask. Just say, hey, I'm going to do this for you today. Offer what offer what you can do. Because sometimes if somebody says, well, what can I do? And I'm thinking, oh, well, this would be really great, but I'm not. Well, then I'm not sure if you're able to do that or helpful. So instead don't say, how can I help you? Just say, hey, you know what? Would you like to come? I, you know, I've got a few moments. Let's go for a walk or let's go for a coffee, or can I grab and bring you lunch today? Like, you make the offer of what you're capable of doing. And I'm like, I'm all over that. If you can bring me over a meal. Fantastic. So making that a little bit easier and saying, how can I help? Half of the time we don't know. And we we're, you know, we don't want to ask, right? So just tell us what you know. You make the offer. What can you do? Or you're so in it in that time that you don't even think that you it doesn't even occur to ask because you're just moment to moment trying to cope with. What do you mean? This is like yesterday. I can do it. Yeah, right. I was just going to say just in our experiences as therapists and in chatting with families, I think another barrier could possibly be just managing everything outside of the house. You have kids that have disabilities, that have an OT and SLP school, music therapy, this and that behavior. And I can't even imagine just trying to keep all of that sorted in your minds and in your daily schedules. Like how tricky that must be, and the burden that you must feel like I'm going to want to do all these things for my kids and to help support them, but that's just adding more pressure and more stress. If you think about it, in a workplace, if any person had that many administrative tasks, they would have an assistant for that. And you don't have that. You don't have, you know, a household manager assistant. Yeah. Um, but that that is a huge barrier. Yeah. I've said a few times that I could, I could run the Olympics. I bet you could. Yeah. If someone could just look after my my family and my house for, you know, ten days, I got this. No problem. Yeah. Um, I was thinking of another, like, not exactly a barrier, but a challenge. I found that it's inherent with the diagnosis of down syndrome. So when I learned that down syndrome one is a spectrum, and two is that children with down syndrome rise to the potential of the limit we set for them, because too often those limits are too low. This becomes problematic in problem thinking for parents. So much pressure because it's like, okay, so if I do speech therapy twice a week and I do music, I do all these things. I read all the articles, I go to all the conferences I attend, all the workshops, I listen to, all the podcasts, you know, like then my child will reach their full potential and if, God forbid, they don't reach their full potential. Whose fault is that? Right? So it sort of goes hand in hand with the uniqueness of of what we learn and know about down syndrome, that the more we put like that, it is some that it is our responsibility to give them every opportunity so that they can reach their full potential. That's exhausting, and I'm pretty sure it's impossible to. It is impossible. I have some really strong thoughts about what you just said. First of all, not your fault. Second of all, not every family needs to do. Therapy all the time. If it doesn't work, it doesn't work. And people shouldn't even feel bad about it. Don't feel bad because we also see if we're really honest. We also see families who attend a ton of therapy, and it doesn't reach this unattainable thing because they're aiming for something that's not their child's potential by attending therapy. Therapy can also be a grief process for families, where they attend a ton of therapy in an effort to process their child's reality and their own reality. Um, but yeah, it's too much. It's too much to have all of that pressure. Um, and ideally, that burden would be shared among many people on the team and people at school and the family. But that's a lot. It's a ton to take on as one person, and I think that's where that one of the most heartbreaking things is when families feel guilty about not doing enough. Like we're just like, oh my gosh, you have no idea. Because you, you, you guys are like, you know, families are so singular and you're you're in the thick of it, like I said earlier, and you're just going from day to day to day. I've had conversations with with families where they're just like, I don't see any progress. Like, I don't know what's going on. And I'm like, it's because you're in the thick of it every day. It's hard to remove yourself to kind of reflect. And so this is where we say, like, rely on your village, rely on the support team that you have around us to kind of help, help kind of maybe shift your perspective to be like, no, actually, we're seeing a lot of progress because we obviously don't see your kids every day. We see them every week, every two weeks, whatever. So we have a slightly different perspective where we're seeing them with a bit of time gap in between. But it is, I think Marlena and Susan, we've all had conversations where it just breaks our heart when families come to us and say like, oh, I feel guilty. I'm not doing enough. And I always say, you're doing more than enough, but it's hard. It's easy for me to say that. But at the same time, we don't get professionals telling us to do less or like we don't attend a doctor's appointment or an eye doctor dentist, school meeting, you know, thing where they're like, um, you know, everything is great. Why don't you take a month off? And only ever once in my life has that happened, where a therapist has said, let's stop, because this is going to be best for her. Taught me about what? Like cognitive consolation, consolidation is, you know, knowledge consolidation, which I had no idea about. And that was someone from the DSM, of course. Right. Um, but we don't get that messaging either from the professionals. So it's it's hard to justify doing less. Well, I think this message is long overdue. Then more is not always better. Um, because your child is always in the context of the family. So if doing more for your child extends the family's capabilities beyond anything sustainable, that's worse, that's worse, that's much worse, right? It's pushing you to exhaustion even further, then that's worse, right? Yeah, I always felt. I always felt that I never did enough because when I would. Stephen, you know, speech was coming. But then the autism, the autism diagnosis came around when he was about eight. So then he lost his speech. He lost all of that, all of the social activity, like he just was out of it. And I always, you know, coming here and as a parent, what do we do? We compare our kids with others. And I'm thinking, oh, well, if I had done sign language a little bit more, maybe he'd picked it up, or if I'd done this a little bit more, what happened to those? But like, I always felt like if I'd done a little bit more, maybe he'd be talking by now. But realizing that that's not necessarily, you know, where he's going to go or where his capabilities are, it's just not there. Maybe at one time, but not. But the other thing that I'm learning now is that when he's gotten older, he's going to be eighteen. And I'm realizing that some of that pressure that we put on ourselves thinking, well, if he goes to school, if he does all of these things, then he's good. Why am I going to send him on a bad day? Like, maybe he's just not in that space now and it's okay for him to have a week or two off that he stays home or he doesn't go because mentally he's just not. And or when our kids come home at the end of the day, they've worked all day. Well, what does Ryan and Sarah want to do? They just want to chill out for an hour, like veg out, not think about it. Well, why would I think Stephen would be any different? Like, he's he's had demands on him today or he's came here and he's had demands. So why wouldn't I allow him to relax? Chill out. Yeah. You know, if you wanted to, you know, lay there and not do anything. Why should I feel I need to come over and say, want to do a puzzle? Like, no, chill. Relax. Right. Like, I had a parent who told me once that I think they used the example of going on a hike with their kid and how for a long part of the hike, the kid was like, okay, I'll go with you. I'll follow your instructions. But at a certain point that parent said, but like it's been under my it's like it's been my agenda all this time. When is it going to be time for his agenda and when can we actually go? And that was such a great, like little moment for me where I'm just like, absolutely. Even as therapists, like you're doing our agenda the whole time, why can't it now be time to kind of, you know, to let you take the reins a little bit? And I think you're absolutely right. Like if any of us are having a rough day, we call in sick from work. Why should it be any different for, for for your kids too, right? Oh, absolutely. For parents or for parents whenever possible. That's right. Asking for help, like Cheryl said. Yeah. Right. Or and part of that comes back to just being honest with yourself. If you're honest with yourself, then you're only going to benefit by being honest with others, right? Because, you know, we we want to help each other. We want to be a part of that. We don't want to see anybody like it's it's a two way street, right? Sometimes we're able to help and sometimes we're not. We're in a place that we need the help. So yeah, I want to bring up in the theme of honesty, the fact that a lot of what we're talking about here is not very public knowledge. This is these are feelings and thoughts that are kept in small groups or inside the home, and people don't necessarily know. And I think a part of that is related to stigma around mental health and this idea that we should all just be self-sacrificing and just manage it all magically on our own. Um, so I'm wondering, Susan, if you can speak a little bit to what is up with this stigma continuing? And do you have any thoughts on how to overcome that aspect of it? Yeah. So I think there is definitely still a lot of stigma, but I do feel maybe this is just my positive nature, but I do feel it changing. I think we're all more I think actually the pandemic helped, right? Because all of us had no choice but to admit that we were lonely and depressed and anxious. Right. So I think that was something that helped a lot of us to sort of it normalized some of these issues for for everybody. Um, so I think, though the stigma as it affects parents, though, is that there's still this conception that parents feel that they cannot ever put themselves first. I always have to finish everything I can possibly do for my kid before I can take care of myself. And I, I mean, it's just kind of a pervasive opinion out there that basically communicates the parent is communicating to themselves that my health and well-being do not matter. And that's, you know, if you have a child who has, you know, something like down syndrome, which is a lifelong condition, you can't sort of get to your own self-care later, right? You have to make space for it now. Otherwise, you're not going to you're not going to be able to do it in the long run, right? So I think yeah, there was a second part to your question. What was the second? Oh, just thoughts on how we could overcome this as a broader society. Should people ask like what? Do you have any ideas around that? I mean, that's a really large question. I know, I'm just asking you to fix society. Could you fix it, please? I do think that by all of us admitting when we're feeling like shit, that's what. That's what we need to keep doing. Like yesterday, even, like Hannah came to me and I. She was like, oh, are you ready for your, like, super busy day? And I was like, I am not managing well. And she gave me a hug and I cried it out for a minute. And then you know what? I was, I was kind of okay after that, right? So I think if we can just all of us make it more normal and acceptable in society in general, but also for for parents. That's going to help. And that's what I really love about our, you know, our parent group. Right. This is how I know Cheryl and Angela quite well, is that we have this parent group that we meet once a month. And I think a lot of stuff gets normalized in there, right? Yeah, absolutely. If you don't talk about it, then you're then you don't realize that other people think the same way. Like some of the things that in our parent group that we've shared, it's just like the honesty is just kind of like, man, we're just like anybody else. Or whether you sit down for, you know, a marriage counseling or any other counseling until you start talking to other people, you're like, that happens in your house, like, or other like it's the same. It's no different. It's it just looks a little bit different. Right? Has anybody ever and like all the hands go up right in the group. And when I did that, um, interviews for, um, the short film, the Dual Diagnosis crossroads for Autism and Down Syndrome. Um, it was so funny because, like, I did this, like long interview and then I saw the final cut and I'm like, they made me look so depressed and sad and, you know, like, oh my gosh, I just look like I don't think I ever smile in it except once. And I talk about, like, really hard moments and tough times. And I was like, oh, great. And so, um, when, when we had the, the film festival and I was on the panel, I just wanted to say, hey, everybody, that's not me all the time. But I had a huge amount of feedback of people that said, thank you for saying that, for sharing that, because I feel like that all the time, but I feel like I can't say it or, you know. Yeah. So I do think that sharing it, um, is, is really important. But I do want to say one other thing that we have to keep in mind that for some people, in some situations, they do have to be careful about disclosing any struggles with mental health if they're not in a safe situation. And and they're concerned about other people being concerned about their parenting or something like that, that's going to it's just not for everybody all the time. I think it's important to point that out, that, um, you need to make sure you're in a safe space before you, I think, share, especially if you have safety concerns or, um, find one, find a safe space. So it doesn't mean like if you're unsafe, you should just hold it all in and carry it, but that, um, it's important to find a safe place to to talk about stuff like this. Um, this is where I chip in and say that therapists are healthcare workers, and we are experienced in helping families navigate some of those challenging things, including finding safe places to be. And we do do some kinds of those things. So if you have anybody on your care team who's a therapist and you're wondering, who do I ask about this, you can ask that person if you feel safe to do so. And it's confidential. Always. Um, but that therapist know kind of the lay of the land and some of those more difficult things, too. Yeah. And I think jumping off of what Angela was saying, that for therapists and professionals listening out there, we also have to provide safe spaces for our families to be able to share, but also respect boundaries, respect cultural expectations, because it's not easy for everybody. Everyone has different histories with how they've grown up and how they've been taught to talk about their emotions. And and it is one of those things that it doesn't mean that you still can't support them, and they still can't in some way express those emotions, but we have to give them the space to do it in a way that works for them. Absolutely. So if someone's listening and they don't feel like they're in a safe situation and they're really struggling with their mental health, what's your advice? Like what? Yeah, I would feel like they don't have a safe person. Yeah. Do you have some advice? So, you know, it would depend a lot on what is the cause of this unsafety. There are some, like, direct victim resources that are available if there's domestic violence and things like that going on. Um, what I would suggest for families who are feeling this way is to reach out to the therapist that you like the most, um, that you feel the most rapport with, that you pediatricians also can do this. Family doctors can do this. If you feel you have this understanding and bond, um, with that or the rapport with that person and ask them for some references and then they can because people listen to this everywhere. So I can't provide specifics for Burnaby. That won't be that helpful. But you can reach out and try. And yeah, we can do the leg work, the leg work. And there are free things available. There are free things. There are free supports available. And I think that's important for people to know you just sometimes it takes a bit of work and that's where you're, you know, your SLP or your OT or a teacher might come in handy is helping you identify those, but they are out there. Maybe we can throw some links on the page. Always. Yeah, always right out of our mouth. You got it? Yes, absolutely. You know, we're pretty experienced with talking to social work and some of those kinds of things, um, to try and support families because if we're facing things like housing insecurity, food insecurity, domestic violence, we can't work on speech sounds. Let's be realistic. That's just so impractical. And so sometimes we need to start there with safety. Um, we can't give you speech homework if those things are going on. That doesn't make any sense. So we we work with wherever families are at. Really? Yeah. I think it's a I think it's important to take the first step. So to find anybody that you feel, um, close to or that you're able to be honest, I mean, part of the healing comes with as soon as you admit it, as soon as it comes out, whatever it may be, as long as it you found a, a safe person that you feel that you can talk about. And, you know, one thing about that is that by telling somebody else and talking to them about it, you know, it opens up. Maybe that person knows somebody else or, you know, is that networking, even when we've sat in, in, you know, had our parent groups and stuff like there's networking that's happened like somebody else goes, oh, I've had that answer. Like, I'm really great at communicating and talking to people and being honest and having people over, and I am who I am, and I'll be honest with you, but I'm no good at getting on the computer and searching up stuff and finding out this and getting this report. Like I'm always saying to Hannah, Hannah, would you mind submitting that? Can you look that up, please? Like, I don't know who to talk to. That's a good person to. But that's. This is what I mean though. So I'm going to say, you know what? I can't submit any of this stuff. I'm I'm done. Can you find out this information for me? So I think that's that's part of it that there is somebody out there that knows. So unless you open up, it's not going to go anywhere. You know, you're going to be sitting on one of those time bombs and then go back and still feel guilty because you blew up at, you know, your kid or something, or you you just don't want to be there anymore, right? You all of those negative feelings come on up and then you feel even worse about yourself. You want to use your reserves for the things that matter, like paperwork. I'm sure you both will agree, is like the bane of a lot of families existence because it's just so much constant. Yeah, for all of you. So I can only imagine. So this is where your village comes in handy. And we like paperwork. As therapists. We're very used to it. I mean, especially if it's helping families directly. We're happy to help, but even finding the resources like it more than others. It's our job. We get it done, right? It happens. Yeah. It needs to get done. And one thing that I think might have people holding back and they like, oh, I kind of know this person that I could talk to. But what if I tell them something and they've never heard? I can promise you, we've heard all the things right. We won't be surprised. We've seen all the things. We've heard all the things. And we're not going to judge people for admitting their truth, or when they need help, or asking for something that is a little bit on the edge of the scope of our practice. We've heard all the stuff. Um, and I think most therapists who work with kids with developmental disabilities have probably heard all of the things. I think we can speak for the group at large there. Yeah. Mhm. Um, we kind of talked a little bit about the general barriers, um, that families and parents face. I would just love for our listeners to get a really good understanding of some of the day to day things that can be a struggle for for families raising kids with disabilities. Um, Angela, would you like to start us off and maybe just everybody all together on the count of three. One. Two. Three. School. Yeah, because I think people will appreciate it more once they understand it's not just, oh, just having down syndrome, but there's so many layers. Sure. So, yeah. And for people who maybe don't have a kid with a developmental disability and they're like, what are you talking about? Sure, sure, sure. Yeah. Oh, man. I mean, if I just went through one day, it would take the rest of our time. No. Um, I think, um. Yeah, I, uh, my daughter Eva, with down syndrome and autism. She is nine, and she just started dressing herself. Major, major, major in the morning. But it is behavior contingent. So hopefully that sticker chart continues to have the power, uh, needed. Um, and, uh, but before I would have to, like, go and dress her, but not just change her clothes. There was a fifteen minute script that had to be done in a particular order. We had to. I was the doctor. She was the baby. I had to take her temperature. I had to give her fever medicine. Then she would throw up. So then I'd give her juice, and then she would feel better, and then her tummy would hurt. So we'd have to go through a very long. And if we missed one and put the socks on, the socks would have to come off and go back and go again. So that's what dressing looked like. And so this is one of our major breakthroughs of the self dressing because now the script is lost too. So it's been a big breakthrough. So but before that and that's when I because you get to these moments you're like something has to change. Let's take a look. What can we compress? What can we get rid of to make life easier. Because we can't keep going like this. So yeah. Yeah. So um, and then my daughter has a feeding, uh, safety plan, so meals are not quick or convenient. They are like many steps for her own safety. And same with her lunch. Packing has to be like certain things, including a pedicure so that she gets her, uh, intake properly. Um, and then walking to school again. When we first started a new routine, it was very challenging. And now we have, like a good rut for better luck, lack of a better word to go in hand off to the A, which is too many times a different person, which doesn't go well. So then she runs away from school and they have to go find her, and then they get her back into the classroom. And then she's not expected to do any of the same things that the other kids are doing or behave the same way, and she's fine with that. So she becomes the boss for the day. Uh, doesn't learn anything, goes to after school care and, uh, where they are a little better at working with the families so that they're meeting her, uh, safety feeding safety plan. Um, and they're supporting her. They don't practice therapies, but they are more in tune with the behavior and the outcomes there. So and then same thing with dinner. I have to make three different dinners every single night. My other daughter has an eating disorder, so she has to have a certain kind of food. And then I usually just eat what's left or I eat the convenience food. Um, and um, yeah. And then bedtime again. It's just it's full of these routines that sometimes they're not self serving. They take up a lot of time and, um, are difficult transitions through. I mean, we have a pretty good thing going that took nine years to establish, but all throughout it, it's always like extra challenging in every little thing. So I talked in the film about, I don't know if it made it in, but, um, about watching other families, just like holding hands, walking to school together. And this is in a time when Evo was in a halo brace and she was in a wheelchair. So I had to just to get her in the car. I had to fully disassemble the car seat and pull all the straps out, put her in the car seat, thread them back through, and then reattach the car seat to the car. Then fold up the forty pound wheelchair and get it into the back seat. Then get the other kid who's also having a meltdown because her socks don't feel right. Into the car. You know, I'm in tears, just like at the end of myself. And I see these families, like walking down the street hand in hand. And I'm just like, two fingers to you and, like, screw you people. You know, you just take this for granted. Just walk into school with your kid. It's just like it's resentment. It was at that time really, really, really, really tough. So, um, yeah, I mean, great segue into my book, people. I'm writing a book. Uh, now, when I say writing a book, like it's going to take, you know, when we look at all the things we have to deal with, please expect it in twenty to twenty five years to hit the shelves. Can't wait. Yeah. Looking forward to it. But it's called sweaty, fat and late. The life of being a parent to a child with down syndrome. So and and or maybe just special needs. Right. Because that's how I just always felt. Never on time for anything. Because some little routine had to be redone or whatever. You know, fat because I'm just eating whatever I can find to shovel. That also makes me feel better. Right. And the sweaty. Because I'm just chasing her, like, all the time. Carrying all the bags, always running. You know, it's the sweaty, fat and late is like the life. Um, but my plans for this book are to alternate chapters with harsh reality. Tough, tough things that we've gone through with a chapter of humor, because there's a lot of funny stuff that happens. Uh, and, and I think it's a great representation of our lives, like, yeah, they are really, really, really, really hard at times. But there's other times when your kid just has got you crying, laughing, you're like shaking uncontrollably with with laughter and the joy and the way that they view the world and the wonderfulness that they bring to it in their own special way. So yeah. And I can I just add a little bit there in that, um, I find that the parents who are the most resilient, who kind of are, are best in that category are the ones who find joy in their in their kids. Right. And who even though day to day life as you just described is very, very difficult, you still, like both of you are brilliant at this, right? You always find the joy in what you're what your children bring to you. And you also see the humor in it, right? You can you have the ability to be lighthearted. And and I get that there can be lots of factors that would prevent people from being able to do that as well. But if you can get to a place where that is happening. It's it's beautiful. I think it goes a long way to helping you out. Yeah. I really want to hear from you, Cheryl, because Eva and Steve are similar in some ways and different in many, many others. So let's. I'm listening to you. I know my days have been really tough over the years listening to yours. I'm like, I can identify a lot of them. And part of me over the years now has come to a point where like, damn, why do why do we have to go through so much to try to fit into these worlds and classrooms and schools that are not conducive to our kids like we feel as parents that have kids that have disabilities, that for some reason, we have to fit our kids into those square pegs and they're round like they don't work. So when I think it's important for parents to give themselves permission to say, You know what? I don't need to be resentful because I'm like that too. I'm thinking, like, I would love somebody to call me up and say, hey, do you want to come and do this? I can't go and do this. Like it's that resentment building that life will never be the way I thought it would be. And it's hard for my Ryan and Sarah because they can't do those things, because I can't do those things and we can't do those things. So one thing I've been really working on the last few years is that I don't have to fit in to that, like I don't if I don't want to send him, or if you're not going to do what I feel like doing today, to hell with you. I'm going to come in and I'm going to tell you that, and my kid's not going to go here, and you guys are going to miss out on having somebody great like me. Like, like, we don't have to feel that we need to, that they need to do this in order to be like the other kids. They're not. And they'll never be like the other kids. But they. They still have the same joy, the same the same desires as all the other kids. But we can give ourselves permission that we don't have to conform to what? Just not going to work for us. Like it's just not going to work. Yeah. Sorry. Like, you're, you know, with Stephen and like, it's not like when Stephen goes to school that he's really learning anything because that's not what he needs. He needs that social thing. He needs that routine. He doesn't want to be bored. So what you want to do with them is not going to work. Yeah. Because it doesn't matter. He's not going to fit. I'm going to start making choices. What works for him. You know, we have to start giving. Because if Sarah came home and said, oh, I'd be like, whatever. Like, you know what I mean? Like, we, we they are the same. But I can't expect Steve to fit in and be that way. And we put our parents, we put ourselves through so much stress trying to make them fit in because the school says they need to, or the school says they need to this thing, well, you know what? It's not working for me. I'm having a meltdown. I'm having a breakthrough and I just can't do it. So and we as parents are never going to fix the errors and the troubles at school because it's not just affecting our kids, it's affecting all the kids. Like, we're just. We're just not. So school for me is just one of those things. I mean, I have a thirty year old. I mean, I have been through, you know, Vancouver and Burnaby and Port Coquitlam schools now. Like, they've just gone down the hill and there's I just don't know how they can come back from it. So as parents, we need to give ourselves permission. Saying do you know what? Mary's not having a good day today. Yeah. We ain't going in. Yeah. It's not going to do. And like in in the grand scheme of things. We're not going to die. We don't have we don't have a report in. The teacher's not going to fail us. We can make our own choices and try to stand firm. Now that's harder for others. I'm I could never I couldn't work because I didn't know if I'm going to get a call or if I'd have to be back. So some I get that there's some parents that don't have that support system or they got to go to work. So what do you do? So you're kind of caught in that catch twenty two. But I guess you gotta you gotta give yourself that grace. And I think that's I mean there's a very slowly but there is like Susan said, there is a bit of a shift happening where people are starting to. I think the education system, for the most part is trying to catch up. But there is a big, you know, at least in the therapy world, or at least. Yeah, Marlin are just like trying to formulate this thought together, but into thinking that way that if this what is meaningful for our kids, who is going to define what is meaningful is are you who sees my kid at school, but doesn't really know the ins and outs of who they are? Are you going to be the one defining what's meaningful for my kid's life trajectory? No. Who's going to define that? It's going to have to be the person themselves. And the best thing our students tell us every day in sessions what is meaningful for them. We just have to tune ourselves into that and help figure out. So Steven is a great example of that. Steven loves music. He loves so many things. He has so many things that he that are of interest. But yes, maybe just sitting down at a table and writing a printing worksheet is not for him. And that's okay. Like, who says that that's what he needs to do, right? So I think that's a general and I think that and correct me if I'm wrong. But as parents, I think that does bring a lot of, you know, guilt and stress. It's just like, okay, well, all the other kids are doing this. So he should be able to do this too. Like, what else is he going to do? And the thing is, like, your village should help you figure out like what is going to be meaningful for Steve. Let's explore what he likes to do. Let's let him lead the way a little bit. Um, I think it's complicated by the fact that both down syndrome and autism are spectrums, right? And so there's a lot of misconceptions around what having an autism diagnosis means. And sometimes it applies undue pressure on families because they might suspect that they're missing something. And that if they just do things in a certain different kind of way, all these things are going to be unlocked and available. And that's an immense amount of pressure that families put on themselves to, like, find something missing. There's not always something missing. Sometimes the person you see is the person, and that is fine. That's great. And following their lead is not a bad idea. Um, but that person always lives within the family. So when you're talking about what you're talking about with the extended routines and rituals where you're like, oh, we have to put in a boundary somewhere here because we're getting into hours and hours is what it sounds like, routines and rituals, which is not sustainable for your family. Yeah, yeah. Did you want to comment more? I was just going to say that there's a few phrases I would really like to remove from my vocabulary. Like I have to, I need to, I must like that I should, but also, um, must be nice. Mhm. Yeah. Because I say that to myself way too much when I like. And it could be families who just have more money than us, or families who have two parents or families who have family in town or families who, um, don't have kids with any challenges, or other families with kids with down syndrome whose kids can do tons of things in mine can't, or whatever. That whole must be nice. It's not helpful. It's not like it's not doing anything. Social comparison is it's a it's a hard one. It's really tough. That's one of the things I when, when we first got the diagnosis with Stephen that he had autism. I mean, down syndrome. And I, I wouldn't go to anything. I didn't read anything. I didn't want to read anything. I didn't want to put him in a box. I didn't want to know all the things that they're going to tell me first, what he can't do. And so I stayed away from all of that, resenting it at the same time, thinking, oh, I wonder what they have to say about this, or I wonder what they have to say about that. So I really tried to to not do that because it was hard to come here and sit here and watch all the kids going, hi. Good morning. Like I'm just like, ah, you know, Steve's never going to talk. Like it was really frustrating. So I just tried not to fill myself with things that they could or couldn't do. And I, you know, you have to admit, I mean, it's since he's been born, even up to this time, you know, lots have changed the way things were, right? You know, it was always the big sad thing to come in. Oh, I'm sorry, We're telling you like. No, you've just had a kid, like, shouldn't that be exciting? Don't come in and sad eyes and say, well, you know, but, like, you know, you have to change a lot of the stigmas, right? It's it's. I guess it's just it's slowly coming. You know what? That's my daughter's name. So we know her as Eva, but her full name is Evangeline, which means good news. And that was a thoughtful choice because she's not bad news. She's not like a sad diagnosis. She's good news. And her middle name is Joy. And she turned out to fit it perfectly. Yes, but like the comparison back to the social comparison thing. Like, even just today, like, um, Sheryl got to go to Belgium for a bunch of days and I could say, must be nice. But instead I'm going to choose to say which I do believe is true. Sheryl, I'm so happy for you. Yeah, but you know what happened, though, building up to that. And it was seriously like we thought we couldn't go. So Steven's sleep had gone for quite some time. We do that. He's up and down and sleep. And so if he doesn't have sleep for a few days, then forget it. It got so bad we were supposed to leave the Tuesday, so by the Friday he was violent. I was to the point calling my doctor, saying I got to drop him off at the hospital like I got to do something. Children's hospital wouldn't take him. He's seventeen and a half, blah, blah, blah. So I'm just like, someone's got to do something because I'm scared of my kid, so call the doctor. He's like, okay, you know, let's try some of this. Um, I guess it's, uh, something that would calm him down a little bit more. Not something that you'd want to give your kid, but it, you know, it was helpful, but it didn't help. So we spent the weekend, like, just totally terrified from him. Then the Monday night, I called the doctor Monday morning and come up with a sleeping pill, half a sleeping pill and slowly started. I'm thinking, okay, he's getting a little sleep. But I also knew that the girl that was coming in knew him really well. She had him so. But in in that trauma, if I hadn't, if that hadn't happened, I wouldn't have gotten that sleeping pill. No. We've been sleeping in Stephen's room sixteen years, never leaving it. Hours like I've spent a lot of time self-motivating myself, being in silence and working in that. But. So she comes along and stays with us and Shonda, I don't have to sleep in his room now. Like we don't have to go in his room. She got him in a routine where we give him the pill. Thirty minutes, you know, an hour. Then we follow the strip that we've always done. He's never been a problem going to bed. It was the falling asleep because he get so tired you can't go to sleep anymore. So now we read him his books. We kiss him goodnight and we leave the room. And it's changed my my evenings. Like I see my husband. Now, we don't go days without seeing each other. Right? So I think sometimes when things get that bad, I think God just kind of says, do you know what? If you're not going to do something, I'm going to do it for you. And I like we still have issues with sleep and maybe getting the best sleeps, but I'm not in there. I have a bit of a life back, but it took something explosive to happen, and I look back and think I should have done something a little bit earlier, because now that I've come to know, I'm not allowed to say it. We need a buzzer. But I mean, now I realize going that away. Yes, I realized I've been sick for a long time, like now. And going from a, you know, frying in a frying pan to fresh air, like I can actually stand back and go, mm, that was so unhealthy. It's so unhealthy to not allow yourself. Well, sometimes it's hard to see when you're in the thick of it and you're just trying to survive. Yeah. It is. Absolutely. Yeah. Yeah. For sure. A lot of times it's slow, right? You don't start. No. When he's three, I'd be like, well, I guess we'll do this for, you know, the next fifteen years. You're starting. I mean, like, I guess we'll just do another hour because he needs that to be calm tonight, and then it's very slow. And our guys are complex. They're very complex individuals. They're wonderful. They're they're amazing. But they're they themselves are going through a lot day to day. So when Angela gave the example of a routine with Eva that is on. Correct me if I'm wrong, like on a generally good day, but on a day where Eva is maybe sick because these guys have to deal with a lot of medical things, it is that much harder, right? So it's so hard. I think probably one of the most difficult things would be the variability in how your kids are eating, because you have a plan for a particular day, and then the next day they're like, nope, that's not going to work. What else you got? Right. And I can only imagine how exhausting it must be to continually pivot every day to be like, okay, now I got to try this. I got to try that. So that in itself can be very emotionally and physically exhausting is to just continuously try to keep up with the changing things that happen. So pressure to be creative all the time come up with a new thing. Think of it, what am I going to do now? What's the new way? And it's always urgent. This is not there's only like two things in there. There's not enough in there. There really isn't. Yeah. We're trying to figure out well why did he do that? What did he do there. What was that. What was that like the before, during and after. And you know, trying to navigate all of that. You're generally like you're very good at keeping track of things because, you know, would you have to because especially when it comes to sleep, you're like, I need to figure some pattern out so I can deal with helping my child. But it's hard because it is so variable and so different day to day, and that can be just that much more work. Mhm. Um, Susan, from your perspective, what are your tips for professionals like therapists, teachers, behavior consultants, anyone that's working with these families and how they can approach this topic of checking in with families and their mental health status, and how we can support families from our from our perspective. Yeah. And I think actually everybody here has already contributed very beautiful, wonderful things on that topic. Right. Like, um, I think that the role that most professionals can best take with stressed out parents is to ask them how they're doing. Like you just said, Hina to check in. Right. And then also to be prepared that you might get a very long answer with a lot of emotion. Right? And that's okay. Right. Absolutely. Um, we have, you know, many, many therapists here now at Dsph, many of whom I have mentored in different ways over the years. And I think one of the things that's toughest for new therapists is not knowing what to do in those situations. And me saying to them, you know, it's actually okay to just listen. You don't need to feel like you have to give a bunch of advice. Like especially if you yourself are not a parent. Especially if you yourself are not a parent of a child with a developmental disability. Right. It's okay to just listen. It's. That's fine. Right. And, um, I think and then also that the, the hot tip that you all just mentioned about never using the word should. Right. Especially when it comes to things like practicing skills at home. Yes. Right. Like, we we all have to be really careful about that. And I sort of had a decent picture about that. Um, before when I was mostly doing speech therapy. But then I did this, you know, this extra schooling, and I did a project where I was regularly going into families homes for lengthy periods of time or accompanying them to the grocery store. And I was like, I gotta stop giving parents homework. They can't, they can't. This is not feasible for most parents the way that I've been giving it to them, right? So, um, I think you have to check in with parents about that. What do you feel like doing this week? Like, here are some options of things. Can you can you handle anything? Um, if you can handle anything, like what would it be? You could try this this week or this. What do you want to do? Right. Really leaving it up to the parents instead? Yeah. Because like you said, Angela, like, you don't ever go to any of us and we tell you to take a month off, right? That was such a good way of putting that. Um, but now that you've said that, like, I really feel like we should do that. You know, I think that would actually be helpful, but also reassuring them at the same time, your child and your child is not going to suffer, right? Like by missing out on that. Because when you said this, when you guys, you and live said to me, hey, why don't we take, you know, July off and I'm like, what? Like, no, we're going to come every Friday I don't care. Like we'll make it work. He's gotta come. Like, who else is going to give them the blah, blah blah, right? And I'm. But. So maybe. Okay, here's some other things that you can do. Besides you really are doing a great job on that. And you were saying about like, you know, about other professionals. Well, like, for example, our pediatricians, our doctors, I hadn't seen Steve's doctor for about four years, like for Covid hit and then this and that. And so we go in and he's going through his checklist. Okay, what about this? What about this. Have you gone and done this? We really haven't seen a blood test. And I'm thinking, oh crap, I really have been doing shitty like, oh my goodness. Like, oh that's right, I haven't taken him to the bus. But you know, I haven't taken him in because who's going to give him a blood test if he's freaking like, show me a clinic, tell me a place. Don't tell me. Why don't you try the autism place in in Richmond and take them? I'm thinking, okay, now you're telling me to call them up, and no, you tell me a place that's going to put him out. Then take the magical fairy lamp place where blood draws go. Great. But this is what I mean. But it's so detrimental for our our kids to have this test. Could it be something else causing his his sleep or whatever else? I know he's got mild sleep apnea, but don't go through a bloody list and then say, here, you should have this done and you should check that out and go do that. And oh, oh, well, what about at this? And I'm just like going like, um, I'm doing a damn good job and I'm leaving there feeling like I am a shitty. How can I let this go? You're right. He hasn't had a blood test. Oh my goodness. Like, don't put that on me. Tell me that's what I'm thinking. Tell me. Tell me a solution. Yeah. And if they don't, if they don't, if they don't do You can't can't knock them out. Or if there isn't something else coming up like dental or whatever, then don't you dare put that on my list. Why don't you look at other ways that you can rule out? Well, it's probably not as thyroid because it's not going up and down. It's, you know, it's thyroid. If it's thyroid, it would be all the time. We wouldn't have. So so reassure them a little bit more. Or when you're going to see professionals and they're telling you they're trying to figure out, you know, mental disability. Like with him when they were trying to figure out whether what was going on. Because I took three years to get the autism diagnosis, like everything they're trying to tell me, like, he's got mood, you know, bipolar mood disorders. So, you know, you don't go to these professionals and then you go back to them and tell them, okay, well, he's been diagnosed with autism and leave the office and have that professional say and say in your ears, you're leaving. Well, I still think it's bipolar mood disorder. And I'm like, how can you leave that with me? Well, I was just going to say it's like just dropping these things and leaving you with the weight of it being like, okay, it could be this go home and figure that out. And meanwhile, as a parent, I'm sure you're just like, like anxious and stressed and just like, why would like, did I miss something? Should I do more? And it's just the cycle continues, right? And it's just like Angela said, it's very unhelpful. It is unhelpful. But yeah. So from your perspectives as parents, what would your advice be? So that's one thing to kind of lead with some solutions. Do you have advice for professionals that are listening out there as well in terms of how we can help support families in this situation? The five minute check in idea I'd already written down as an idea for that, but in our conversation I thought of another one which is like, you know, to take off the month of July or whatever. Um, is that when we are when you're working with our children, it's in a very, uh, structured environment of the office. And the plan is here in ABC. Da da da da da. I think it would be nice is to which is what I end up doing instead. But it takes a lot of creative brain juice, which takes energy, which I don't always have is to, um, the way that we, like, hide the vegetables, like how we put, like, the kale and the brownies or like whatever, like, you know, doing the same idea with whatever therapy you're working on, right? Yeah. So, like, we're gonna, like, you know, if they like to have Dance party, we're gonna do dance party, but we're going to do chanting in the dance party, and it's going to be with the letter F, because we're working on that sound. So fun, fun, fun or whatever to then, then it's not like, okay, sit down, child, we're gonna do your exercises because like, that's that doesn't that only works here. And it doesn't always work here. It doesn't always work here. Like. Yeah, you know, it's not that fun. So paper stuff, it's not that great. So what people can do is say, hey, we have these toys at home. Like how can we do we like to do these things. How can you put that on the therapist? How can you work f sound into our dance routines? How can you work f sound into, you know, playing Barbies or whatever and see what the therapist can come up with? Because we are trained to like, think laterally like that. But knowing what based things right in your daily life. Yeah. And that's the best way to learn honestly, is to just like especially OT stuff. I'm like, if you can just build it into your regular routine. But you're right, it is a lot of demand to think like, how can I come up with it? Right? Like, I don't know how to come up with this. I have enough on my plate. But I loved what Susan said earlier too, was I like to have honest conversations with families and for you to say, you know what, Hannah? I do not have it in me right now to work on this stuff. And we are one hundred percent okay. So we would love for families to be open with us and let us know what your limitations are. And it is okay if you don't work on printing for like a couple of months. It is like, what is the priority? What is the most important thing? And I think we want families to be honest with us and let us know what your capabilities are, and we're happy to respect it. Yeah. Another idea. Um, I love it. Um, is, unfortunately, sometimes a therapist has, uh, started a new exercise or a play based thing to say, like introduce letter F, which was like, unfortunately, it was totally against one of our, like, major goals that we were going to do. So, like, uh, Eva, I'm trying to get her out of the I'm a baby thing, which is like the morning routine is I'm a baby. And then she's like, not tomorrow, but just today. One more day, one more day, one more day. And like, it's problematic. And, you know, um, thanks to Barbara Laird for her talk. Don't teach anything you can't unteach later. That has stuck with me. And that is. Yeah, because it should go on a t shirt because that's where I knew we were getting in the territory of because she's so much tinier than all her friends they like. She wants to play baby at school and they love it. And they, like, try to pick her up. And just like I don't want her for so many reasons to be a baby anymore, like, or to play baby or whatever. Right. And then I didn't communicate that with a therapist, which I'm not saying was my fault or anything, but if the therapist could have let me know ahead of time, we're going to do this play scenario, is there any and especially if you have a child with autism, there's a lot of triggers, right? Like or whatever to say I had this in mind like you know and so another thing being like a lot of our kids, um, like Eva has a whole imaginary situation. Like she also has multiple personalities. Like today she's Elsa and tomorrow she's Anna or whatever. And you have to call her that, and I want. And I got the little barb layered red flags going up. Right. Like, because I don't want her to continue to develop an alternate reality and then start to which I've heard can be a problem later. Sure can. Sure can. So then if that's the case, then we maybe in therapy should be careful with our imaginary play or whatever. Right. So, um, I think it all worked out, you know? Fine. But it was a little bit of like, a, uh, like, we've been working to get rid of the baby, and now you're doing baby every week and speech or or whatever. Yeah. The hot tip for the therapist out there is to ask, is there anything we should avoid? Um, and, you know, that could be many, many, many different flavors. It could be in our religion. We don't have this in in our culture, we don't do this. But that's like. I mean, if I had to give you the list of everything would be so long. But if you said to me, here's our plan for the day. Sure. Then I could give you like, oh, just don't do this or don't say that. You know what I mean? I think that that's going to look different for some families. For some families, they're going to be like, kind of give me an idea of what you're going to work on so I can give you feedback. Some are going to be like, you know what? You know best, you do it. Let me know later. So this is the thing where we have to, as therapists, be flexible and adapting our styles to the kids, but also to the needs of the family. And I think that in itself is important because then it's not a one brush for everybody. Yeah, totally. Yeah, totally. Yeah. Did you want to add to that, Cheryl, anything that you think professionals should know or try or do? Having the experience that you do. I think some of. I think I think the professionals should first have the thought in their minds is that, yes, I'm a professional. I went to school for this, but that mom or dad knows the they are the expert. They know that kid better than me. So do not sit on the other side and point your finger or say, well, I think this is best when you have the parent saying, well, actually, you know, I don't think that that's really great. Maybe it's better. Steve's nonverbal. So maybe, you know, if I sing all of his instructions, maybe if I do something that, you know. Yeah, I think I think we need to make sure give the hat to the parent or the caregiver and say, you know what? Actually, you are the professional. You are the expert. You know your kid way better than I do. So this is my thought. This is what I think we should do. Let's work it together. And not as opposed to we're doing this. Yeah. And even have the parent being like confident enough to say, you know what? Uh, sorry, Steve's not going to do that. Like, it's just not going to work. Like. Yeah it's good. I mean it saves everybody time, right? You know. Exactly. It's going to work for him. But don't sit there and say, well I want you to do this anyways. Can you give it a try? Well, how can we modify it? There has to be a bit of a back and forth is so important, I think. I think a lot of parents have lost that confidence in themselves as being a parent when you know if their kid was typical and didn't have an issue. They'd be all up in arms, like, you know what I mean? Like blah blah, blah, blah, like as opposed to, oh, you know better than I do. And no, you know, your kid like, you just, you know, the kid. And so we need to parent in, in a way that take back that ownership and be the ones that say, I don't think so. I want to save space, too. Some families do come to us and say like, why is this happening? And usually the therapist does have some ideas or some starting points of what, like why it could be happening. And that's okay to ask, like you are the professional in your own child and you see them and know them the best. And it doesn't mean that you have to understand all of the like health related inner workings of things. You can ask you can ask those questions and that's fine. Fine to do. Yeah, for sure. Because our guys are a little bit like opposites, right? Like I'm like telling my husband, oh, you know, well if he spills the milk, just ignore it. He's like, what? No, I'm not gonna ignore it. Oh, I was like, well, no, why don't you come with me down and talk with him and live and they'll tell you this is how we're supposed to be like. And I think a lot of the times, you know, that's, you know, that's another thing can happen in homes, right? Yes. We're the ones that are going and having all of these meetings. We're understanding, but our other parts of our families are going talking about how did he get away with that? He just threw the plate on the floor and he's like, no, they're intrinsic. They don't do anything unless that doesn't make any sense. Like, you know what I mean? But it does make sense because this is what I've been told by the professionals. So it's okay for me to go. I'll just clean it up or, like, not make a big deal out of it. Right? It's that understanding. Right? That that doesn't work with my guy. Okay, so as we're wrapping up this episode, I would love to kind of check in with both of you and ask, what are some of your go to practices routines that you do to make yourself feel better, whether it's momentarily like in the moment, whether it's a weekly or daily thing? Cheryl, how about we go with you first? For me, I really try to start my day off looking after me first. Mhm. That I'm not begrudging because, you know, I get all the kids ready and then I'm not ready. And they're going are you coming yet. Just a minute. So I like to try to get ready first. It's a small thing but at least then I know I'm ready. I can I'm ready for to take on a lot of the times with Steve, and I don't know what's going to come that day, so I just try to stay in that moment. Yeah. Work with what I have, and then that gets me into the next moment when things are really bad. You know, I like to try to get out for a walk or I like to find something that I can. It just gets me out of the house. I find if I can step out of the house, then I feel like, actually, there's a world out here. And look, there's a sun, and then there's like this, and there's. There's things you fail to notice. Yeah, there's. Yeah, there's other things, you know, and making sure that I'm, you know, trying to check in with others, like I'm fairly social. So I like to make sure that I'm at least connecting with others when I'm really, really down. You know, I'll take those hugs like, you know, when somebody will come along or ask me or I'll be just honest the way I'm feeling. I don't like to hide behind that, because then I think if you are saying, oh yeah, I'm fine. Like if my neighbor says, how'd it go today? Did he sleep? No, I'm terrible today, blah blah blah. Like it just feels freeing. Yeah. That it's just one more thing. I'm not pretending. I'm being honest. That person may say this or that like, it's it's. Yeah, I find just if I lie about it and try to hide and Pretend. Yeah. It's not helpful. It's just not. So I think that that's one of the first and foremost things to make sure that I'm honest, that I'm looking after myself first. Yeah. And when things are getting really bad, then, yeah, I need to take a day or an hour. I need to just get out of it. Yeah. Um, otherwise you can't. How can you think through it? Like you can't think of any thing through it. Or. You know, I like to get away from my sisters, you know, take off for a weekend or something like that. So I think it's important that we do the things that give us joy so that we can take that joy and give it back into, you know, helping Stephen or doing whatever. Right. Um, yeah. Yeah, I think that's kind of where I start. Yeah, that's a wonderful start. Angela, what about you? Um, I, uh, I do like when things are really bad. Going outside is, I find, really good, too. And I do like the Five Senses circle. Like, Took a minute just to see. See what I see. To hear what I hear. To smell what I smell. Maybe I'll bring a piece of chocolate. So I can taste what I taste. Um, you know, and that kind of thing to like again. It's like getting you back in your body and getting that nervous system going in the right direction. And, um, you know, I have my whole life I've been like, woo woo meditation, you know, like how, like, come on, what is this? And so but then I found myself in a place where I kind of had run out of a lot of other ideas, and I was like, wow, this works some days. Really well, some days just a little bit. But overall, like the meditation thing has been, and now my doctor prescribes it, which I think is cool, right? Yeah. Um, and so a resource for our listeners that they may not know about. There is um, an app called headspace, but there's some free ones. There's a paid subscription. But did you know that headspace is on Netflix? So, Netflix? Yeah, and they're all five to ten minute meditations. There's no long ones, which of course we don't have time for thirty minute meditation. Right. So I have found that to be really helpful. However, I have learned that meditation does not work great in a crisis moment. It's more of a daily practice thing of like lowering your overall alarm bells. Preventative thing. Yeah, there's one more thing that I do and I think it's very healthy is lament. I find it's very helpful if I can just go and talk out loud of all the things that make me mad, or why I'm crying and just I lament, I just throw it out there and I find because people say, well, you know, you're crazy. If you start answering back, you're not actually because as I'm throwing all of these things, see, you did this or you did like, I'm just lamenting all the things that make me hurt and I'm crying or whatever, or I'm shouting, I'm upset. But at the same time as I'm shooting out all of this negative stuff I'm hearing, actually, no, you're a good mom. You did this last week. You did that last week. You did this, you did that. You did this. That. Like, what are you talking about? Like you're taking stock. I think. I think it's good. It's like grieving. Yeah. Like having kids with special needs. It's like a long grieving process because every day it's something new that you need to let go of. Yeah, because you don't have the control over. So if you don't have the control, I usually go like, what can you do about it? You know, if you can, what can you do? I can go through that list, but I just find it very important to make sure that you let these feelings out. There's no sense of holding on to them. Or there's times where I'm like, I'm crying, and you know that like feeling you get in your throat and you're just like. And then you're just like, okay, okay, I got to pull yourself up. No. Go there. Feel that. Allow that grief. Allow that anger, that resentment, that sadness. Those are all feelings. But you got to let up. Anger is another really good one to let it out, right? It's a good feeling because it it evokes change. It evokes you to do something. Anger is no good if you hold on to it and it becomes something else. So I think it's really good that you just let it out there and then throw back some of those positive stuff. Yeah. So that's good. Um, I was going to mention the socializing is like for me in particular. Um, um, but like this podcast, this has really been really good for my mental health. So thank you for inviting me because I'm going to be great. Like, I feel so good right now. I do. I feel really good. Like how I feel after our parent groups, like how I feel after having coffee or lunch with another parent of a child with down syndrome, or. A friend who doesn't. But there's something special about that shared experience. Even though it's not the same experience, there's just some that we all know we're in the struggle of the lucky few club, right? Like it's a club. Yeah. And so, yeah, the gathering and things like that. Which is why the Dsph needs to create a parent lounge. So it's it's in the plan. It's in the plan. And are there sleeper beds in it? Oh, wow. I'll come I'll bring my portable massage chair and we'll just, like, rub everybody and give them love. All these ideas for fundraising for the massage chair. I was just going to say, yeah, let's just get the fundraising going. We can totally have some massage chairs set up out there. Laughing is so good. Humor is so good. And when we get together, it always both happened. Like like I was saying those chapters in my book, we always talk about hard stuff when we're with those, like, trusted friends. Yeah. And then we always laugh and laugh and laugh about stuff too. Yeah, right. Yeah. And I think from our perspective as therapists, we would just say like rely on on us as much as we can help support your mental health because we may not be able to do a lot, but we can do enough to maybe just help take one thing off your list. So definitely rely on your village. Um, I know that Susan has a really great list of some resources and things that we'll put on our website, as well as some of the links and things. It's just like a little one pager on what can I do if I have one minute? What can I do if I have ten minutes? Or if you're blessed with a whole half hour, what could you do with yourself? I know sometimes just trying to figure out what to do is half the battle. You're like, I don't know what I need to do for my mental health right now because you need different things in different times, different days. So. But yeah, thank you so much. Um, I, Marla, and I would love to thank you so much. I think this has been a really, really important episode. I think it's probably one of our most important episodes we've done in our ten seasons. I hope that families, caregivers, professionals, everybody listening out there really take stock in your role, in your own mental health, in how you can support the people around you in their mental health. And really, um, I think making it okay to not be okay, but also making it okay to talk about not being okay, because that, as Cheryl said, that is kind of the first thing is admitting it and talking about it and it not being a stigma or a bad thing. So Cheryl and Angela, thank you so much for being so open and vulnerable with us and for sharing your stories. I know it's not an easy thing, but it's going to make a monumental impact on our listeners. And Susan, thank you so much for coming and sharing your expertise as well. And yeah, hopefully we'll have you on again for a part two at one point. So yeah, thank you so much. Thank you, thank you, thank you.