S2 E6 Lina's Story: Stop pleasing everyone

Welcome to season 2 of The Way Forward Podcast. I'm your host, Erin Sullivan, and I'm creating this series for my occupational therapy doctoral capstone project at the University of Missouri. This season is aimed at empowering families navigating the challenges of raising children with behavioral and emotional health concerns. Each episode will have a guest who shares insight into their experiences with this topic. For the sake of guest privacy, all names will be kept anonymous. We're here to support parents, caregivers, and children by fostering understanding, breaking stigmas, and sharing stories of resilience and hope. Together, let's find a way forward. Hello everybody, welcome back to another episode of The Way Forward Podcast. Today I am joined by Lina. Welcome Lina. Thanks. Yeah. So before we get started, I just want to do a quick icebreaker question with you. So what is your all-time favorite movie? Oh my gosh, I am not a movie watcher. I have an all-time favorite show. Oh my gosh. I have told my husband that if I'm like in a coma that he should play me Gilmore Girls and I would come out of my coma. Okay, awesome. Okay, so just to jump into things, do you mind telling me a little bit about yourself and your child? Yeah, I am an occupational therapist. So I definitely came into parenting with a little bit of, I guess, a bias. And so my husband and I have three kids currently that changes sometimes because we're foster parents. And so we have, for sure, two kids that are stuck with us long-term and they are six and five. Could you go into a little bit more detail about your children and any diagnosis that they might have? Yeah, so the two that are ours that are six and five, neither have a formal diagnosis. And so that's kind of the space that we sit in. Both of them have behavioral concerns and problems and nothing, nothing official to label them with. And I go back and forth about that because something really nice about a label when you can say an acronym or say something and people can kind of fill in the blank and know, get a little like idea of what's going on with your kids. And we just don't have that. So it's kind of a long story explaining both of them have behavioral concerns though. What are some of those behavioral concerns? For the older one, he has always been what you could call strong willed. And for a long time, I think my husband and I were sitting in that camp of thinking maybe that's, that's what we were looking at. But as of today, as a first grader, just as an example, he's the only kid out of his class of 17 who has a separate desk next to the teacher. So even without any formal school supports, they're accommodating him in his behavior a lot. So I think if I had to channel his teacher, she would just say pretty impulsive and immature and some outbursts and really busy. And at home, we see the same kid. It's not like we're getting a different picture at school, every kind of routine task is difficult. I think of like a analogy of like he's like a river with a current. And my husband and I are constantly like swimming upstream of that river. And occasionally like he might like slow the flow of his river, but he is always moving in a direction. And like the rest of us have to kind of deal with the situation. And it's not necessarily what I expected as a parent, I thought I got to determine the direction of the river. That's not how it works. So that's kind of his situation. He doesn't have formal accommodations, but I would say it's probably my hardest kid to parent. And then the kindergartener has an IEP and is in special education for about half the day. And we did attempt to find a label for him just to help support school. And all the things they were, you know, doing for him and knowing that he was able, you know, he has always had delays and always had some kind of extra medical stuff going on. And got first steps and was able to nicely transition into two years of early childhood specialized education after first steps, which is really nice. And he made some great progress. And during those two years of early childhood specialized education, they still were never able to untapped like his goal was still engage in anything non-preferred without breaking out. And by the end of two years of of ECSE, he was still really not engaging in things that were non-preferred. And so that's kind of where they were at. And they're like, we're sending him to kindergarten half the day in special ed. It's like, okay. So at that point, like maybe we should try to find a label for this situation. So we did get him a developmental evaluation in the fall at an autism center. And this is where I was glad I was an occupational therapist with a background in pediatrics because at least I didn't go into the appointment hoping for some kind of answer that was going to be helpful to us. I sort of anticipated this outcome and gives me so much empathy for families that don't have this experience. But we left with a, well, he's too impulsive and aggressive to test well. And so we can't diagnose him with anything because of that. So you could bring him back maybe in a year if he's better behaved. And so like the medication word was thrown around. It wasn't pushed, but it was kind of that space of like, how could we ever, you know, using best practice and the way that we, you know, want to evaluate, how could we ever say what he has unless he can behave? That's why I'm bringing him to you is because it's really impulsive and aggressive. So I'm sure he is autistic and actually at home, he's pretty easy to parent because as long as, you know, you understand him well and support him well and kind of follow a routine, he can, he can kind of deal and go on with life. So that's my question. Thank you for sharing that quick question. Did you ever try to seek out a formal diagnosis for your older child? No, we have sat in a space with the adults in his life that have been kind of divided. I think this has been an interesting part of being a parent that we have aamp of people in our life, a friends and family who I think would be really upset with us. If we went in a direction of trying to get an evaluation or some kind of label, and another half that I think would support us. And so we've kind of told the line back and forth of, it's fine. He's just strong willed and then like, some things, some things a little bit more than strong willed. And I think we were sitting in the camp of he will grow out of this. He's young. And even through kindergarten, we still kind of sat in that space of, he's really young and he's a boy. And now I think that we're towards the tail end of first grade. We're really coming to terms with something, something's up that's just causing him some difficulty in engaging in everyday life. And maybe we should, I don't know, do something and we don't, we don't know. Yeah. Do you feel like you eventually will seek out like a formal diagnosis. So as he continues on in school, he can maybe get official accommodations. Or do you feel like he's doing pretty okay with just the non-official accommodations in school? I am officially sitting in the point of not knowing and currently have a note written on my phone for a message for his teacher that I have not sent. That is basically asking that question. Okay. Approaching on the end of the school year. Yeah. How like where is he? Can he go into second grade and you think navigate and be able to figure that out without formal accommodations? Or we need to try to get some justification for formal ones. So I don't know that as of today. And it's the whole stressful. So is his strong wilderness? Does that affect him academically? Or is it more just his personality? Yes. And so as I'm sure you know, you know, I mean accommodations for school should be about their education. And while as far as we know, it appears that his cognition is not a problem. Reading and writing are behind. But according to school, they are not significantly behind. So he qualifies for title one services because of his reading level. And so he's able to get that help. And with that help is making progress. And so that's part of my question to the teacher too of is he making enough academic progress that it's hard to justify accommodations because he's still learning around the same rate as his peers or has he fallen behind because no one has brought our attention that he is behind or has this like significant area of concern in his skills. I think his math skills are right at that kind of average point that they would expect. And so it probably would be more of the like social emotional part of participating in school that they would say is not necessarily with peers, but academically making some progress. Okay. What are some of like the day-to-day challenges that either you face as a parent or that those two children face? I feel like for us, there's an interesting dynamic between them because of the way that they both are. They're best of friends and worst of enemies. And so for my oldest that directs the train and the way the ribbers flowing a lot of times, a kid who's probably on the spectrum will kind of go with it. But bless this already gets confused. And it's sometimes is a complicated kind of way that my oldest wants things to be. And the kindergartner has a hard time sometimes understanding or following and they have these huge knockout dragouts. And so we have a lot of really long meltdowns like last night, my oldest cried for more than half an hour. And I don't mean just like cried. I mean really hurt the kindergarten or to the point where like I'm worried about some significant bruising soon. His face was still red this morning from it. And when he was the oldest was tantrumming, it was like trying to kick down the door. So to be fair objectively, no property was actually damaged, but he was like borderline attempting to break things and break stuff. And that's not that's not every day, but it happens a lot. And so it's sort of limits the places we feel like we can go, especially because both of them fallen that category of whether or not they have a disability, they have some differences in behavior that's invisible. And so the general public expects them to act a certain way. It's really embarrassing to go places and then you know we have these behavioral things happen and you get looks. And even places that are familiar like good friends and family or church or other places that would go a lot, there still feels like a stigma sometimes of like why don't they act differently? Why can't they behave? Yeah. And it just sometimes limits the choices we make. So another example is like t-ball this spring, like everybody we know in our community signing their kids up for t-ball, like we will not do it because we've tried it before and it doesn't go well with a lot of support and a lot of help. We end up really struggling. Well, thank you for sharing that. I think you bring up a really good point about how when society or even people close to us can't actually see the disability, it can be confusing and cause that stigma. What are some of the ways you handle those situations where people are assuming that your child should act a certain way or be a certain way when in reality they just have their own challenges and struggles? Like what are some of your strategies or how do you go about talking to people in public settings about that? I am learning. I think myself years ago felt like I owed people an explanation. And it comes from my personality and being people pleasing and accommodating and wanting other people to feel safe and like they have the full information. And of course, like with both of them not having a label, it was always kind of a long and convoluted explanation. Never quite knew what to say. And the interesting thing about both my boys, but especially the oldest, I don't usually have an explanation for their behavior. I don't understand it either. You know, sometimes I wish it was a really easy like, oh, well, this specific thing always really makes them fearful, like whatever. A lot of times I'm just as baffled by their behavior as someone else is. And so I have watched other people who have kids who are neurodivergent and watch them not feel like they owe anybody an explanation and not attempt to explain their behavior to anyone. And I like that. And I think I'm trying to move in that direction of telling myself, I don't know anybody anything. And if somebody's uncomfortable about my child's behavior, that's their problem, not mine. And I think for a long time, I felt like it was my problem. If my child is causing somebody to be uncomfortable, then I have to do something about it. And so I'm just recently trying to shift into a place of just not even explaining it. And ignoring people who are looking or asking questions or not even giving people information unless I feel like they really need it. So I'm not sure I have a strategy other than trying to move away from the direction of over explaining or trying to help accommodate other people. Yeah, no, that makes a lot of sense. And I feel like for me, I don't have a child. So those thoughts don't come into my mind. But hearing from someone like you who has those lived experiences, it makes a lot more sense. And I totally agree. You don't owe anyone any sort of explanation. So hopefully in the future, you keep building up that confidence in those tools to kind of just focus on yourself and your kids and not what everyone else is around you is saying or doing. I want to switch gears a little bit and talk about some experiences where you've had to advocate for your children. So have there been any examples or times when you've had to advocate for them, either in the school system, the healthcare system, with family or any social settings? Yeah, I would say the one that stands out the most is thinking about my kindergartener who has a lot of medical stuff on top of the behavioral stuff. And I think that's really hard for the general public to kind of wrap their head around. And I feel like I've studied him closely to try to understand how those things are linked. Like we know that our mental and emotional health is related to our physical health. We know that. But when you look at a kid, I think sometimes people don't think of them that way or and trying to get people on board. He he's got some food allergies and they for sure intact his behavior. And I had a slew of teachers and child care providers who were not on board with with that. And that was a it was a difficult balance because you feel like your hands are tied a little bit because if you really go against the grain and and make people feel alienated or like you're upset, you worry that they'll treat your child differently. And I didn't feel like we had like good enough reason to you know switch or find different providers or those kinds of things. And so I feel like I I tried to kind of just keep my story like the thing that I was advocating for simple and concise and the same. And so that hopefully if I just kept beeping the same horn, people would kind of finally jump on board. But I think that that's that's a hard piece of advocating for your kid when you know it's going to fall on deaf ears in a way because people don't have the buy-in that you do as their parent. It's not that people are meaning to be dismissive or meaning to not take action over what you're asking for. But they just may not have the buy-in you do as a parent. And it's really hard to get that. Yeah. Did it end up working out that you advocating you were able to get your son what he needed in kindergarten? Yes. Yeah. I feel I feel pretty strongly that this school year kind of all the things all the things got on board. And we were able to get you know there's just so many players when you send your kid to public school. And so you know just the amount of messaging I do with the school nurse you know are just things I never necessarily thought about. And it it feels a little daunting thinking about him switching buildings in a few years and having to build up that rapport that kind of buy-in with another nurse. Yeah. For sure. I know your children are still relatively young but do they understand their challenges and are they able to advocate for themselves or is that a conversation that you've had to have with them? Yeah. I love that question. My oldest I don't think we've directly said anything to him or he's necessarily noticed that maybe he struggles in some way that other kids may not. So I'm not sure that he would ever identify you know as feeling different or being necessarily different than anyone else. Not necessarily at this point. I have talked to the oldest about the kindergartener. And I think my husband and I have said things along the lines of you have to give him a second chance. Sometimes he doesn't understand what you're saying and you need to pause and make sure he understands before you react. Now we've also coached the oldest a little bit on hey like in that same vein please try to watch out for the kindergartener and make sure that he's okay and being treated well. So like as an example they came home the other day saying butterball and my oldest was really it felt like teasing the kindergartener of being a butterball and that's part of the medical part of the kindergartener. I mean his tone is really low and he's really uncoordinated. So it felt to me that probably somebody or not butterball sorry butter fingers felt to me that probably somebody was teasing my kindergartener that he was a butter finger and kind of like tried to talk to them about that. Like the kindergarteners not realizing that that's the reason that people are making fun of him. He thinks people are interacting with him and that's a positive that's a net positive for the kindergartener. He's like people are talking to me like that they were teasing you like that's not so great. And so then trying to coach the first grader of he doesn't really like just because he's not saying his feelings are hurt. It's because he doesn't know that his feelings probably should hurt in that instance. If people are teasing him about dropping the ball and not letting him play catch with you guys please stand up for him and try to protect him in a way. So that's probably the extent of it. The kindergartener you know I just have to be so concrete. His language is interesting and so I have to be very concrete with him and I think all we've really said to him is please ask people for help. Please tell people when you don't understand. Please tell people you're sorry when they're upset with you is probably the most that we've told them to like advocate or explain the problems he's got. Well thank you for sharing that and I'm sorry he had to go through that experience but I'm glad that both of them are building that relationship and learning how to understand each other's differences because as they continue to grow in school there'll be each other's best friends and advocates down the line so I think that's really important. I want to now highlight some of the more positive experiences. So what has been one of the most rewarding experiences you've had while caring for your children? Very selfishly I feel like I have completely changed as a person. Before I had kids I was a person who judged people who had kids like mine. I felt very confident that if I ever had children like that that it would just it would take some kind of basic parenting skills and my kids would behave a whole lot better than that. So you know through my boys like I have very much learned how to be a much more flexible person and to choose joy and not focus on imperfections or things that are not going the way I'm supposed to. I definitely enjoy being in control and I've been able to do that for a lot of my life and with them have lost all of that and honestly it's actually pretty freeing some days other days I try to pull it back and then we you know butt heads but it's that's been really fun in a way that like I just didn't have 10 years ago where a day or a few hours can look really chaotic and fluid and I can't tell you what's happening 15 minutes from now and that just feels really good and it's something I feel like I was missing and yeah well that's awesome that's a great way to look at you know something that could be looked at as negative and more of a positive light. Are there any other like moments or milestones that have made you especially proud of your children? You know they're both that like first grade kindergarten entering public school. I was nervous about we both of them are July birthdays and so it was a tough call about sending it off and yeah yeah I was nervous and I've been really proud of both of them of just how well they've integrated into school and how much they enjoy it and have made friends and relationships. Even the kindergarten or who struggles with peers has made so many relationships with adults. It's really sweet how many adults that he's built relationships with and can say things about those adults and no things about them and so I've just been really proud of seeing the way that they've been able to connect with people and really build that social capital in a way that I just wasn't sure I but I wasn't sure if they would kind of come those kids that everybody avoided adults and peers included and they'd really have kind of shined in that environment. Well good I'm glad what sort of goals or hopes do you have for your children moving forward in the future? My husband and I talk about this a lot. Because I think we try to like get back to the place of like what actually matters and for us like what really matters is that they can grow up into adults that they can live to adulthood. If we can get them to live to adulthood and be able to have at least one intimate relationship like whatever that is but like at least one like one person in their life outside of us that they trust that they feel like would do anything for them that they could go to with any kind of emotion and be their support system like that's the hope and then also that they would be spending their time in a way that they feel good about. Whatever that looks like whether that's work or not work or hobbies or like just having a life that they feel good about is our greatest hope. Awesome I love that. So thank you for sharing that. Could you give any advice to other families or parents that are currently struggling with the stigma associated with mental or behavioral health concerns or parents that are in a similar situation to you? I would say like if I had somebody chirping in my ear I wish somebody would just remind me frequently that like I am the expert of my children. I do know them better than other people and that being said I think it's important to listen to the people who want to speak about your child you know whether that's family and friends and teachers and bigger providers and whatever. They also like know your kid and see your kid probably in a different way than you. They might see them in completely different contexts like a friend asked me the other day what my kindergartener like what's happening at recess is like you know I don't know like and I can't even predict what recess looks like for him and so you know but there's adults in the world that could tell you that could write you know pages about what he looks like at recess. So I think for other parents like having the confidence that you really do know them best but it's okay to consider the opinions of others or what others think is important and you can throw them out or you can kind of incorporate them into what you're seeing as well but I think sometimes it's hard to balance what you see in your kid and then what other people see and then to know what to do about it but to just remember that you do get to make the final call they are your kid and you do know them best but that doesn't mean that you have to you know ignore everything that everyone says or you kind of discount it all. Yeah going off of that I know you mentioned earlier in the episode that there's a lot of family or close people around your children how do you balance you know you as their mother making decisions when you have other family members or people close to them that are also giving their opinions. I think I find that balanced by hiding things from people I don't know that I found a good way I feel like I have a little bit of a not that I'm lying but I feel like I have to keep track of my head of who I told what or the way I framed certain things because yeah there's some trigger words for people of like evaluation or even you know special education that only freaks people out and so I do not use some of those words very often with certain people in my life and so it's it's not that if they ask me directly is your child receiving specialized education that I would say no but I just don't bring it up and I don't emphasize it or talk about it a lot and that's that's the way we've been navigating and I think right now we're in an easy spot because they're little and I know that that's about to get harder especially if they really need some different kind of accommodations or having some more different academic problems it's going to be different so I know I'm probably going to need some better strategy some more but right now I'm passively avoiding the confrontation that makes sense I know you might have some insight on this with your occupational therapy background but why do you feel like there is still so much stigma around like you said words like special education or evaluation and how do you sort of explain because you have that medical background how do you explain to family members that those aren't words that we should be scared of yeah I heard somebody say that stigma is the behavior that you see attached to a person and I think for kids who you know we see them doing things and we would label it as bad or defiant we are not sure where that comes from and I think that's the stigma it's like why are you behaving badly and I think if it was just a very clear explanation that wasn't so pointed that everybody there'd be less stigma but I think it's the the not we don't know as a society what's causing some of these neurodevelopmental conditions like autism or ADHD or ODD or mood disorders people don't know what the cause is and so you know there's still that debate about nature and nurture and are genetics contributing to mental health concerns and I think I think all those lingering questions are what contribute to the stigma because I think even if the average person knows a little bit about mental health diagnoses they don't know what causes them because none of us know what causes them and so there's still this like there's this stigma of it's probably bad parenting because if we don't we don't have a genetic test for ADHD we don't have a blood panel that we can do for ODD it's probably bad parenting and I don't know like until we can get around that or increase some understanding that while we don't know the biological causes or contributors of these mental health conditions we can't point fingers at parents I'm not sure what to do about that so even the people in my life that that have those stigmas it's it's really hard to kind of walk that line you know my husband and I have seen people we really love it's kind of equally equally embarrassing and equally validating I'm team let other people parent your children because I don't know what I'm doing and it's actually just like an extra trial to watch somebody else try something and it's like if it works then I'm gonna adopt that and if it does it's like another tally mark for me of like yesy that still doesn't work and so many people that we love I have watched them parent my children in a way that I would kind of guess that they think that my husband and I aren't doing are like you know and then they will parent that way and it backfires really bad and they look at me like uh oh that in work what's wrong with your kid how come that in work exactly that's what I've been trying to say you know and so there's this that's where I almost feel like then I could insert this this feel of stigma of like this is what I'm saying like I promise you I'm doing the normal parenting things of providing choices and having consequences and predicting things and being consistent and I'm doing those things and it doesn't change you know what is going on with my boys and so I feel like that's the step in the direction of reducing the stigma but I don't know well thank you for sharing that that was very insightful and definitely gave even myself a new outlook on mental and behavioral health concerns and children in general and just like I said earlier I'm not a parent so I don't understand having those lived experiences but by you sharing that I definitely have a better understanding and just for me as a regular person just checking my own biases and how I react to things too I think could help a lot of people listening so thank you I want to end on our last question now I know you touched on some of the positives already but could you tell me about a time when you and or your child found a way forward so something good that came from a challenging situation I would say the village that that we have built is the positive that has come from the challenge of having kids who who just have some special needs I I can imagine I've never raised a child with a physical disability but I can imagine there must be some similarities there of when you have a child that has a special need of some kind you kind of push away certain people or certain people isolate themselves from you but then you also like attract certain people and I have found that in general you attract kind of salt to the earth people who choose to love everybody no matter what and like can find the good and everyone it just happened that way that the people in our life who have chosen to love our boys like they chosen it because they're the kind of people who just see the good and everybody and so it wasn't hard for them to love our boys because they see the good and everyone and they don't dwell on the negative and they are very forgiving and give grace and give second chances and all the things and so those are the people who have been like stuck around and my husband and I have felt like we can trust because they're still here and I don't know that we would have known those people or ever met them or still had them in our life if we did not have children who had those kinds of challenges we wouldn't have needed to rely on them or ask them things in a way that you know I just feel like we found people that I wouldn't have in my life otherwise and I can't really imagine my life without them and and I think it's all because of our boys well thank you for sharing that and thank you again for just taking time out of your day and sharing your story here on the podcast I know what you've said will resonate with a lot of listeners here and just other participants and guests that have come on the podcast so thank you for being so open is there anything else that you would like to add before we wrap up? No I appreciate you doing this and thanks for letting me come on today. Yeah of course we'll thank you Lena and we will see you guys next time. Thank you so much for tuning in to the Way Forward Podcast. We hope you enjoyed today's conversation as much as we did. Feel free to follow us on Spotify as well as Instagram @mazoo_ot. That's M-I-Z-Z-O-U_ot. We'll see you next time.