Ep. 9: 3 Ways to Take Charge of Your Therapy and Medical Team

Madeline Cheney  0:00   

"Now it feels more like they are educated advisors to me." 

Hi, you're listening to The Rare Life. Today I have a solo episode for you. I chose to talk about taking charge of your medical and therapy team.  

A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes. For the Season 1 finale episode in September I will read a few of these and respond. 

Alright, back to taking charge; Kimball has had many therapies in his short life, as far as he has had feeding therapy, physical therapy hearing specialist, a vision specialist, a deaf blind specialist, a developmental specialist, as well as tons of medical specialists. So, this is a huge deal to me. And I will kind of outline where I'm going with this you have a little roadmap. First I will talk about the evolution of my taking charge-ness and I have three tips for taking charge. I will talk about befriending your therapist and medical team, prioritizing, and letting them help you. So let's dive right in. 

For some reason, I have a very clear memory of a moment in the NICU. I have several clear moments, but this is one of them. The rest of it's a blur. When Kimball was, I don't know, it was one of the first one of his first days of life and we got to help with what they call his cares (I don't know if that's a universal a term for that). But we got to help with his cares which just meant helping-- I think it was like moving around the pulse ox and all that, all the monitoring things. And we also got to change his diaper, that was like Oh, you can help with his cares. You can change his diaper, which I thought was kind of funny. I was like, I bet you just want us to do this. But anyway, I was changing Kimball's diaper, and it was a wet diaper, which is relevant to the story. And I was like, oh, should I wipe his bum? Like he didn't poop? And I was not a first time mom either. I already had a two year old Wendy. And so I was like, oh, should I wipe it? And I asked the NICU nurse. I don't even know if she was even a mom. I was like, Oh, so he just like peed. Should I like wipe him or just leave it and she was like, I mean, you know like, I think it probably better to wipe it, it probably feels better. So I wiped him and I was like, That was weird. Why did I just ask a stranger if I should wipe my child's butt? Like that just seemed so weird. Because I was I was already a mom like I was his mom. And so that was kind of the first thing I thought when thinking about this, taking charge. This was just kind of how I started out of having the reins kind of taken over because he had these medical complexities. And, so it was needed to have different experts kind of taking charge with that. And even in little things, I think I just totally handed over the reins. And I have come a long way since then, I think at the beginning, fast forward to like when we came home with him, and we had a lot of therapists from early intervention coming in a lot of specialists, a lot of doctor's appointments at the hospital. And I was just kind of dancing between despair and overwhelm just so many diagnoses. And the learning curve was so steep, and it's hard to have a newborn anyway. And so all that together, I was just really, I was struggling a lot and especially with our in home therapists coming, I really let them be kind of a mothering figure to me. And I really, I really appreciated that they were able to kind of take the helm. And just, I mean, they would just come in, and they would ask me questions, but I was pretty timid. And I would just kind of let them drive the train. And, they would give me suggestions and I would be like, Oh, okay, and then it would kind of be like--they'd come the next time they'd go, Did you do it? And I'd be like Well, no, it was kind of hard. And it felt very, like I was kind of taking a backseat, and they were very much the leaders. And again, I'm really appreciative of that. And I think that they're good at doing that because it's not uncommon for parents to really need someone to take charge. 

Fast forward to now two years later, and I truly feel like I'm the team leader, and I really--I have really grown to love that role because it feels right to me, being his mother, that I am the person who knows Kimball best and loves him the most. It just makes sense for me to be the one to kind of take that charge. And now it feels more like they are educated advisors to me, and they are there to support me. And I can ask them questions, and it's, it's great teamwork. Now, I really, really, I love our therapists, and doctors, I just feel I feel a deep appreciation for them still. It's just shifted, the dynamics have shifted. So I have three practical tips for taking charge that I think is of the help have helped for me. And so I don't know that all of these things will resonate with you, but I hope that you can at least take a few of them and find them helpful or at least interesting.  

So #1. Befriend them. This was a big deal to me in the beginning. So I think it kind of is a, it's an important principle I think, whether or not you want to take charge or kind of let them be the ones in charge. I think either way, you really do need to be friend them. And I think partially just for your happiness because these people, they're there a lot. They're involved in your life a lot. And so I think not having a relationship with them is hard. And it took a bit of effort for me at the beginning because I was in this bad place emotionally and I kind of resented them in a way I think, because I was like, they're just making my life harder because they're telling me to do all these things on top of everything I am already doing and so I  did kind of resent them at first and then I just decided like, man, I need to be friends with these people. And they were so friendly and kind and so didn't take too much effort. One thing I started doing was calling them by name. And that may sound so simple, maybe I'm the only one who struggled with that. But there were just so many people. And at the beginning, especially a lot of moving parts. And so, Angie and Lisa who have episodes in the show, that are coming right up, but they would come together at the beginning so that I would have fewer appointments which I really appreciated. And they would come visit together. And I remember being like, I don't know which one's Angie and which one's Lisa and I didn't really care. And then once I started caring, and I started making more of an effort to be like, which one is it? And I just made that little extra effort to know what their names were and to start calling them by their names, both to them, but also to my husband like when when I would be telling him like, instead of saying, Oh, the hearing specialist said to do this. I would say Angie said to do this. At first it felt weird because I just wasn't used to it yet. But as soon as I started doing that, and calling them by their names, it really helped them become more human to me, and therefore a lot easier to befriend. And I also started doing that in my planner, I was, I mean, I had so many appointments to keep track of, I had to have a planner. And so in my planner before I'd write PT two o'clock, or, you know, different things like that, and then I started writing Younshin at two o'clock. And maybe I'd add in their title too, just so I could remember at the beginning, like who they were and what their role was. But that was another way to kind of reinforce that these are people and to remember their names and to call them by their names instead of calling them the PT or whatever. And that was a really big deal. Like that's like my number one hack because as soon as I started doing that, it really really helped me to become friends with them. I also learned to kind of fake it till I made it as far as friends, so I would just act like, Oh, hey, it's so good to see you or just being a little more friendly. And that also really endeared me to them. And I, the more I acted like a friend to them, I felt like a friend to them. And they are also great and they were always so friendly. But as soon as I started opening up more to them, and treating them like a friend, they became my friends. 

And I also, depending on the therapist, and some were pretty open to texting back and forth. And so I would do that with the ones that are more open to that and now it's second nature to me. Like if Kimball does something cute with his communication, I'll text Angie like Oh my gosh, guess what he just did or Wow, I just left his hearing aids and during his nap, it's crazy. Like just these things that--it actually became a second nature to want to talk to them about things because they truly care about those things. So like I can't, like it wouldn't mean as much if I texted, you know, another friend, just a mom, friend Oh, guess what this just happened like these these milestones, the therapists are so involved in that they care so much. And so it just was really natural to me to text them updates. And also just send pictures of him doing things that were exciting, as well as questions. And I don't do that all the time. But I think that really does help. It's another way to act like a friend and to be a friend and to keep them in the loop. And really, I really love that too. And overall, I just feel like you are just a better team for your child when you have more communication. And when you have better, just better communication about what's going on.  

And so now I'll move on to tip #2 which is to prioritize. This has been something--I feel like I'm just kind of on this constant quest to actually do what they tell me to do. And I don't know, I don't know if I'm really, I don't think I'm the only one struggling with that. I think part of it is the sheer amount of therapists which at the beginning, we had so many therapies and as well as medical appointments that I remember I had like this kind of this meltdown and I was like, I have to cut down on therapies. I can't keep doing this. It was just this... I don't know almost like the survival instinct. Like I can't keep doing this. We have to cut something. And I would I read through the list of all the therapies and I was like, Ah, but they're also important. So I actually had to let go of feeding therapy. He was tube fed at the very beginning. And he had an OG tube through his mouth. And we had been working with a feeding therapist to help him increase how much he was taking by mouth through a bottle. It was a very minimal amount right then and that's really important thing, that's super important. But I was like, I have to cut something. And so that was what I chose to cut. And I just told them, I just can't handle this right now. Later, we did add in feeding therapy once I got on my feet more and I felt more capable. But I think you can just--you can only handle so much. And I think you you function better as a parent when you don't have a million different things to pay attention to. And so I think with just the fewer you can have, the more progress you will make in each of the things that you do keep. I'm a big fan of reducing as much as you possibly can. You're not doing your child a favor when you have so many therapies that you can't keep track of what you're so supposed to be doing and you're running ragged. I also had have cut therapists when they, they--I have a pretty high standard for who we keep on his therapy team and medical team to when I don't feel like it's needed, we don't keep them. And it's nothing personal. I've had an experience cutting a therapist that she was really, really nice and we would chat when she came, but it kind of never really progressed I kept kind of waiting for the appointments to kind of get going and for her to start teaching us things, but that never really happened. She'd just bring a couple toys and talk about parent conferences coming up and then she'd leave and that's kind of what I stayed at. And I was like, I can't keep sacrificing our time for this therapy that is not --I don't see how it's helping Kimball. There's nothing that's benefiting him and therefore I just told her I think... I don't think I was super direct because it was kind of an awkward, like, like a breakup or something. But I did just let her know that we were, we weren't wanting that therapy anymore. And so I also take into consideration to Wendy, I think other siblings are a big deal if you-- she really struggles, she still really struggles with appointments because it's all about Kimball. And so I also recognize that so it's a high price for therapy. So they really need to, to be worth it and to really prove that they're helping. And so that that's been a big deal to me is being able to prioritize so that each of your therapies that you have you really care about and they're something you really want for your child. And you can be more serious about. And I, I try to have them as infrequently as possible too, the ones I do keep. So like Lisa was his developmental specialist. We love her and she's awesome and she was really helpful. But I was like, I think we can get by with having her once a month. And so that's what we did. And it was nothing personal again, it was just how few therapy appointments can we have. And so there is this great book that I read pre-Kimball, I think Wendy was a baby when I read it, but it's called Essentialism by Greg McKeown, I think is how you say his name. I'll put a link to that in the show notes. But, he talks a lot about just doing what is essential, but there's this quote that I would think of in regards to Kimball and his intervention. And so I'll read that quote: "And instead of making just a millimeter of progress and a million directions, he began to generate tremendous momentum towards accomplishing the things that were truly vital." And in the book, he has this drawing of like, a bunch of little lines going a tiny little bit in different directions, and then that contrast it with one line going super far, like a really long line. So if you can visualize that. And I feel like that really applies to therapies and the tasks that we are giving our children. So instead of just making a millimeter, so like maybe having like a dozen different tasks that they give you like, okay, you could work on this, and you can work on that. And you might try this, like just tons of ideas, because they have so many ideas, that's what they are there for. But when you are overwhelmed with so many ideas, even if you're able to do them, I can't do it. That's one of the reasons I have to prioritize. But like, even if you are able to do all of them, you're not really going to be able to make a ton of progress in those, you might just make a little bit of progress in a million different directions. And so that has kind of persuaded me to reduce how many tasks I allow a therapist to give me, I kind of I, I've had a conversation with each of them like I am switching over, I want to have one, maybe two tasks when we meet together and have these tasks that I'm supposed to do. And so I just feel like that makes me a lot more likely to do these things. It also helps us to say what do we want the very most, what is truly our priority. And so that way we pick the the goal that is the most vital and the most important, and that will propel them the most. And I think that's better, too, just because if a given therapist maybe gives me six tasks and six ideas, and I randomly am able to do two of them, because that's realistically what might happen. Who's to say the ones I choose are the most important and the most vital to him? And so I like approaching it this way because you can work together to figure out what the most important tasks are so that you are intentionally doing those things that are more important. And it's interesting to me because even with limiting how many tasks I allow a therapist to give me or to commit to, I still struggle doing them. I'm still figuring it out. And it's just tricky. It's tricky to figure out how to incorporate these things into an already busy life of just being just a typical family to just adding that in there. Another thing that I have liked doing too, when we're deciding what tasks to have be our priority. I communicate when a task is--I kind of know I won't do it. When they tell me Okay, try doing this and this, I usually am able to tell I won't end up doing it. Like, you know, what I want to say is Okay, yeah, I'll do that. Well, I'm learning to speak up, when I know in my heart that I will not do that thing. Like, if it is something I'm like, yeah, Kimball's not interested in XYZ, that you told me to work with him, he's just not interested in it. And I just don't think that will motivate him. And so it's kind of our way, I think it's our responsibility of truly customizing the advice they give us and the tasks to what we are more likely to do and what our child is more likely to thrive with. And so I've said that before, I've been like, You know what, I don't think that's really gonna work. I don't think I don't think I'm actually gonna do that, but maybe we could do it in this setting. So kind of just tweaking it and to be like, Yeah, I'm way more likely to do this. As an example, recently I was working with Kimball's physical therapist and she talked about trying to help him stand up, stand up to furniture. And she talked about bringing, you know, tubs from downstairs from storage that he could stand up at. And I was like, Okay, yeah, sure. And then, you know, as the days went by between the appointments, I was like, I don't want to do that, like, I don't want to drag up a tub. I think that will look bad in my living room. I mean, like, they're kind of, I don't know, petty things, but I was like, I just don't really want to do that. So the next appointment, I was able to talk to her and be like, You know what, like, I wish I could say, I will do that, but I just don't think I will. And so we figured out a different solution that required way less moving things around, and with things that were already in our living room. And so it was a win-win, because now I'm way more likely to actually do that. And so I think, you know, they're willing to work with you, I think, as long as you speak up and just tell them and be really honest, like, I just don't think I'll do that. Then you can work on kind of modifying the task to really be customized to you and your child.  

So I think that leads really well into my tip #3 which is let them help you, for lack of a better way to phrase that. This is another way to customize the tasks that they are giving you. When they ask you at the beginning of your appointment, like How are things going, how is he? What's going on? Instead of just saying, good, I've learned to start saying like, Oh, it's great. He's doing this and this and we're really excited about that. And I don't know, like an example would be And he's learned how to go up the stairs and I want an idea of how to help him learn how to go down them. I mean, like, I don't know for some reason I couldn't remember with Wendy I was like, I don't remember how we approach that but like that was a great task to talk about with his his physical therapist because she's great at that she knows her stuff. She knows how to help with that. And so, I think in those opening conversations, when they just ask how things are going, that's a great time to bring up what you are concerned about or what you want help with. And that way, the rest of the appointment is really customized to what's going on and things you really care about. And so like that, I've also had that experience with Kimball's hearing specialist Angie, who will be on later. And she, in one of our opening conversations (she's so good at asking and really caring and so I really feel like I'm able to express what I'm worried about or what's going well), and so I told her, you know, Kimball just keeps screaming. He just keeps screaming for what he wants. And so we were able to make a strategy I could use when he screamed for things that worked on his communication, which is what we were working on together because she's his hearing specialist. And so I was really good at fulfilling our tasks that she gave me. Because it was so relevant to me and I really wanted him to learn how to communicate with his words what he wanted instead of screaming all the time. And so that has been a really big game changer. And I feel like that I just feel so in charge of our appointment when that happens, because I'm saying, This is what I want to work on. And they're saying, great, I have all this education and expertise and ideas I can give you for that thing. So just really, it's just a great just have this great chemistry going on and we're able to really, really help Kimball and I think it's just a great way to kind of--I don't know, I think because these different professionals are trained in a specific area. They know kind of okay, after they do this and you do this and then then you need to do this. It's helpful to kind of tell them where he is, and what he's interested in and what needs to be fixed. So that way it really can help it be a customized appointment like it can really be a discussion all about your child individually, instead of just kind of going through the checklist of what needs to happen next. And obviously, that checklist is really important to kind of know, you know, in the long run where you want to be, but I feel like that, that approach really helps from just kind of going through the motions of like, just any child, you can customize it to you personally and your child and your situation. 

And so, that concludes my my three tips about taking charge of your therapy team. And so again, I hope that, I don't know, even one or two of these points hopefully resonated with you and maybe will help you, you know, take charge and be confrontational or just maybe in your own style in your own way, really find your place at the head of your medical and therapy tribe. 

Next week is parent Kari talking about her daughter Sloan, all about her story. Sloan has CHARGE syndrome and is deaf-blind because of that, profoundly deaf-blind. I'm so excited for that one, it's a great one. So join us next week to hear the story of Sloan. See you then.