Ep. 126: Therapies | When to Scale Back and How to Do So w/ Andrea Loveday-Brown and Larkin O’Leary

Episode Transcript

Larkin O'Leary  00:00

You are the expert in your child. Those people – the schools, the medical professionals, the therapists – they are experts at their job. Yes, absolutely.

But you're the expert in your child. And so, if your child is under distress, if it's causing more harm than good, you're the one who sees that.

 

Madeline Cheney  00:23

Hey, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today I am joined by parents Andrea Loveday-Brown and Larkin O'Leary to chat all about our children's therapies, and knowing when to scale back, and how we might do that.

This topic is very important, and I'm very excited to dive in, but first, I have a disclaimer. While I was listening to it a second time through, I recognized a little bit of this black-and-white thinking about disability coming through.

And I just feel like we see it everywhere, and especially on social media. And in society. It's kind of like this either-or. Like, either disability is awesome, and great, and amazing all the time, or it's sad, and bad, and horrible, and a worst-case scenario.

And according to my therapist – because I guess I'm working on this kind of black and white thinking in just my personal life – but according to her, this black-and-white extreme thinking is actually super common, just, for the human brain.

So anyway, there might be a time or two in this episode that you hear us talk about disability in kind of an extreme positive light.

And I just want to, like, hold space for all the difficult experiences and emotions that kind of come around with that too, for a lot of us. And, you know, if you aren't dancing around throwing daisies about your child's disabilities all the time, or ever, that is totally normal and totally fine.

I just want this to always be a very safe space for you, and where we're able to speak about our experiences with disability with honesty and vulnerability. And I think sometimes the topic that we're covering in a specific episode might lend itself more to focusing more on the positive aspects of disability.

So, with that said, I am super excited for you to hear this conversation. There are some real gems in there, and I hope that you leave this episode with food for thought, and that you feel empowered to do whatever feels right for you and your family and your child in regards to therapies.

Our guests Andrea and Larkin are awesome people. Larkin is the executive director of a nonprofit organization called the Common Ground Society, based in Sonoma County, California, here in the United States.

They educate about inclusion via presentations, and also support local families with hospitalizations and other things like that.

She taught school for 17 years before resigning to care for her disabled son James, who is eight years old and has Down syndrome. His younger sister is JuneBelle, and is three years old. Larkin is a lover of soccer and her bed.

And you may know Andrea on Instagram as Centering Disability, which is her handle there. And I think it's so funny, because sometimes, like in this case, I was like, I don't even know your name. And we were talking about making this episode because we interact there, but sometimes we don't have that visibility there.

She was a senior director of an after-school program for nonprofit called Girls Inc. She also resigned to become a full-time caregiver for her disabled daughter, April, who is 10 years old. She has a big sister who is 11.

Andrea has a small nursery business, and also recently joined the board of directors for Larkin’s nonprofit, the Common Ground Society, which is pretty cool. Andrea is a lover of audiobooks and podcasts, blush, and of cooking.

All right, let's dive in. Hi, ladies, welcome to the show.

 

Andrea Loveday-Brown  04:09

Hi!

 

Larkin O'Leary  04:10

Hi! Thanks for having us.

 

Andrea Loveday-Brown  04:12

Good to be here.

 

Madeline Cheney  04:13

I am super excited to chat with you guys, and especially about this topic. This is something that, like, I just care so much about.

Kind of like helping other, you know, parents know that we have power. We have a say over the therapy load and specialist load that our children bear, and that we bear with them.

And I'm just really excited to hash this out, and kind of help guide parents to have their own epiphanies of what is best for them and their families.

So, that being said, I would love to hear from you guys. This episode is kind of, like, definitely inspired from a social media post that you guys did together about this whole concept of when to scale back on therapies. What kind of spurred you guys to make that post? Was there, like, a moment when you were like, “Okay, we need to talk about this.”

 

Larkin O'Leary  04:59

Yeah. I have been in therapy with my son, you know, basically since he was born, for eight years. And here in Sonoma County, there's just a lack of therapists.

And so, you know, when I had that four o'clock spot on a Thursday, like, I never wanted to give it up, because that is like the coveted spot for therapies, right?

However, my speech therapist, James had had six different speech therapists within six different months. And he really works best with connection. And so, the first two weeks, you know, it would be creating a connection, and then they get to work. But then they would move away.

And so, Common Ground Society has a local Sonoma County parent Facebook group, where I just threw the question in there. And I was like, I'm at this point, like, somebody gives me permission.

I felt like I needed permission to stop the therapies. Because he's making great progress in speech, but I can relate that more to him being fully included in school and the speech therapy he's getting in school.

And I just needed, like, permission to do that. And Andrea is in our group, and so her and I were talking about it. And I asked her if she wanted to do a post together about it, and here we are.

 

Madeline Cheney  06:14

That's awesome. Yeah, because I think, like you say, like, it's almost like we feel like we need the permission. Or, like, the “a-ha” moment of, wait a minute. I don't have to go through all these things that, like, we feel pressure to do with our children.

And I think, you know, like we mentioned, like, the pressure can be internal. Like from us. Like, well, we got the coveted spot! Or, you know, I need to help catch my child up, quote unquote, because they’re, quote unquote “delayed.”

You know, I think that right there can even make you just feel more pressure to do all the things. But like, also, externals. Like the therapists who may not understand why the heck you would ever need to whittle down therapies, because they don't live this life.

So, I think there's just a lot of pressure all around. And so, giving ourselves and each other permission to whittle down where we see needed, I think, is really important.

 

 

Andrea Loveday-Brown  07:00

I remember seeing that post from Larkin, and my first thought and what I wrote down was something along the lines of, “If you're wondering if you should stop, you're very likely already ready to stop.”

And I sort of patted myself on the back after writing that, because it took a long time, you know, with my daughter, who is disabled almost being 10.

That's not how I would have responded or thought in the early years, because I think back then, you just don't know the bigger picture yet. You honestly hardly know your disabled child, and what it all means for them.

So, you lean so heavily on the experts – the doctors, the therapists, all that – or who you, at the time, consider to be an expert. And so, you are just soaking up all that information, you're certainly accepting every possible offer for support.

And when you do meet other families in a similar boat, and they mentioned something that you haven't tried yet, I think in those earlier years, you're much more likely to say, “Oh, well, we're doing occupational therapy, but we haven't focused on feeding therapy yet.”

So, you're doing a lot of chasing therapies, which then I think evolves into what Larkin was saying about, you get locked in, and then you realize, Oh, I'm now to see somebody that has a waiting list that other people are trying to see. I couldn't possibly give that up.

I honestly think that giving up therapy wasn't even on my radar until maybe my daughter was maybe four and starting to get some of those therapies in her preschool. And then you go, oh, huh, she's getting physical therapy at the preschool.

And I'm still picking her up, hoping that she naps in the car on the way to then do physical therapy elsewhere after school, because we've been doing that for a couple years.

I think that it's only later in this experience that you do start realizing that you've got that agency to make choices on what works best for your child and your family.

 

 

Madeline Cheney  09:21

Yeah. It's so interesting to hear you talk about that, because I guess, like, you and I are kind of different experiences, I guess. But when my son was like, I want to say he was like four months old.

And we'd had therapies, you know, in home with early intervention, and the school for the blind and deaf, just tons of therapies and outpatient as well. And that had been going on for about three months of his life. So, you know, three out of the four.

And I just remember I hit, like, a point where I was like, I literally cannot keep doing this. And so, I guess, that early on, I started questioning like, is this something I have to do?

I think... I'm not saying that this wasn't your situation, but I think also because there were a lot of medical stuff going on, and a lot of, like, how do we keep him alive, how do we keep them fed. All the different, like, life threatening things that it kind of did put in perspective, like, okay, well, feeding therapy, we have to take a break.

And even though it is, like, this super important thing, and you know, I know that, like, he needs this to eventually... because we knew, well, we expected that he would someday consume food through mouth instead of being on his tube forever.

So, I was like, oh, well, that will get him there and stuff. And I wanted that. But I was like, something has to go. And that was the one thing I was like, I think that's, like, the bottom of the list, even though it's still really important.

And we did put a hold on it. And we got a lot of pushback. For me personally, that was my first, like, “Huh, I do have some say. I'm not completely powerless to what the professionals are telling me I have to be doing for my son.”

 

Larkin O'Leary  10:51

I think, like, the medical aspect really gives you that advocacy badge. I know with James, he had a duodenal web that the doctors didn't find, but I knew that it was there. And I diagnosed him before the doctors.

And same thing with his strictured esophagus. Those were the points for me where it was like, “I am just as much an equal team member as the therapists and the doctors.”

But, like, for me with the therapies, it felt like almost a lifeline for me to the outside world. This pandemic we've been sitting in, well, we've been in this pandemic for eight years with James.

He's had surgery after surgery where... people, if you have a cough, if you have a cold, like, no one is allowed over here, 10 days before the surgery. Especially when he was just a baby.

And so. those therapists coming over and leading you through this world that is so, like, not what you ever expected? I don't know, like, I mean, it felt like they were my friends!

Like, they were the only people that I could, like, hang out with. And then they knew about the world that I was just entering in. So, it's just interesting because James was the same, you know, he was failure to thrive for his first five years. But it was like my lifeline, were these therapists.

And I never thought of taking a break until just recently, when you know, e's eight years old, he's still eating pureed foods. He can take a break from feeding therapy, who cares if he has to eat pureed foods?

Like, maybe someday he will, but I'm just learning to accept my child for who he is, and get a bigger blender.

 

Madeline Cheney  12:25

I'd love that so much. Really quick backing up, just to what you were saying about, like, how you found value in the friendships of these therapists, and how like it felt like a support.

I think that's really important to kind of analyze by... do these people, do they feel like they really are supporting my parenting of my child? And do they feel like this lifeline, and this, like, needed social thing? Or it doesn't feel like, “Man, this is one other thing, and I'm gonna blow, and I'm at my capacity.”

Because I think, like, I mean, even in, you know, as time went on, these therapists that were coming in from the School for the Deaf, and there is one in particular, I mean, we aged out at age three, and I cried that last day. And she cried.

And it was like, you were my friend through all of this. Like, you got me through, you answered all my questions you taught me, like, I could not have been the parent I am for my son without you.

And I think there's, like, there's those types of therapists, and those sections of therapy, I think the topic matters, too. But then there are the ones that you don't feel that. Right? You're kind of like, oh, good riddance, we’re done. This was not a support. This is just one more.

So, I think there's this kind of that, I don't know, like, something really only you can measure within yourself of like, okay, does this feels supportive? Or does this feel like it's just one more thing?

Also, have you given it enough time. Because that therapist, I cried when she left, I was crying when she was coming before. You know, like, when you're just feeling so overwhelmed.

So, it's like, I think it is worth giving some time as well to kind of see like, okay, where will we end up settling in with this. And stuff at the very beginning, like, well, this just sucks, and I hate it, get rid of them right away.

 

Andrea Loveday-Brown  13:59

So, I first of all really just have to say that failure to thrive is my most hated medical term. And what family, basically while still postpartum, being told that your child who – you know, in our case, she came early, she was small, had trouble latching.

We were doing all this, you know, feeding occupational therapy, and she's deemed failure to thrive. How could we not accept every possible resource that's offered to us? Because her quote unquote failure, clearly, I'm going to take upon myself as my failure as a parent.

And I can't think of anything that more families would want universally for their child than to thrive. And so, being told, literally right out the womb, that that failure is there? I think that becomes such a focus.

And it's almost like you're mysteriously waiting for somebody to announce, “Oh, your child is thriving.” So, I just had to say that.

The other thing is, once we did get to the point where we would start to have conversations here and there with therapists, “Okay, we're not seeing a ton of progress right now.”

So, the therapist would actually say, “Let's have this conversation. You know, it's okay to take six months off, it's okay to take a break, like progress is not always linear. There's the hard work that they're doing in therapy, but there's also just the natural course of development.

There are things like the multiple illnesses that cause setbacks, and the time it takes to heal and catch up. There's just natural developmental leaps. You know, there's all these other factors, what they're being exposed to, outside of schools and therapies, that's positively affecting them.”

And I remember the first time I heard that, feeling the biggest sense of relief and permission. Because as the mom and primary caregiver, God forbid I'm the one to say that first.

And I will tell you now that I have heard that, from multiple people, and sometimes that did lead to us stopping services, and sometimes I pushed back.

And I said, you know, we really value this, there's things about the relationship, there's things about the access to certain resources that she's getting here. No, I would like to keep going a few months and then assess it.

Either way, what I realize now is that I... a little bit resent that therapists don't tell new parents that right from the start. Because I think of the difference it would make, for me, knowing that there was always permission to take a break. Because I didn't know that. It was like a deep dark secret.

And so, you know, if I could do a little backwards time jump to talk to younger Andrea in the mothering process, I would have loved to have had that permission articulated to me sooner.

 

 

Madeline Cheney  17:18

I love that. Well, and even, like, it becomes your choice to have these therapies. That was definitely a feeling I had in the beginning. I mean, we were discharged to the NICU, and early intervention was there that week.

There was no, like, adjust to being home, figure out how to get him his feeds from the feeding tube, like, figure out how to be a family of four now. Like, there was no transition time.

It was like, and we're here. And you need to have this service, and this service. And you need to be doing this every day, and this every day. And I was, like, so resentful of that.

But I agree, I think if there was kind of an explicit explanation of like, “You have control over your child's therapies and care.” And you know, when you feel like we're helpful, we'll be here. And when you want us to scale back, we'll scale back.

And I think even that, if you were like, “Huh, no, I still want you here,” that therapy is gonna feel so much more helpful. And you're gonna have such a different attitude if you're like, I chose this.

Like, as the parent, I had control over this, and I want my child to be in this therapy. Like, that's just going to change the attitude about it, I think a lot.

 

Larkin O'Leary  18:21

And I think, like, as our society grows and learns and accepts disability more as it is, we won't have this pressure of like, “Despite his disability...” Right? Or like, “My son's beating the odds!”

 

It's rather, like, my kid has value because he's a kid. And he's a human being. And like, so what if he doesn't x, y, or z, right? He's still just my kid.

 

And I feel like earlier on, I was like, well, he can, and I want him to, and he's going to. And now it's just like, you know what? I want my son to just be happy. There's so much pressure from society, even as just typically developing human beings, to be the best, and like, do as much as you can.

 

And then when someone has a deeper challenge, or medical complexities, that inspiration porn... it's real, and it's alive, and it's out there. And I feel like that oftentimes puts a lot of pressure on new parents to push their kids to that, whatever.

 

Andrea Loveday-Brown  19:23

And with that, like, it's good to also name that whether we expected to or not as parents, there's comparisons. And that's for parents of non-disabled kids and disabled kids. You feel it. I have two children, and I have felt it in different ways with both.

 

Actually, my oldest, who is nondisabled, didn't walk until 17 months. And it honestly never even occurred to me that that was problematic. She was very verbal, and so our joke was, like, oh, well she'll be reciting Shakespeare by four years old, but maybe she won't be going out for soccer, we don't know.

 

And then she did start walking, and that whole sort of concern went away. And then, when you have a child who's considered on paper developmentally disabled in essentially all the ways, you are still inherently going to feel some comparison.

 

I remember, you know, I have friends with kids that were born right around the same time, and it was like, okay, well, she's only sort of a couple months, quote unquote, “behind,” or different from them.

 

And now, again, all this perspective, hindsight being 20/20, I look back and I feel sorry for the time that I spent worrying. I feel sad for not having had more of a support system to help me understand. And mostly I feel sad for living in a world where disability is looked down upon to the extent that our goals were about fixing her.

 

And it's hard to say that now, I'm realizing, I'm getting emotional, saying the word. But it truly is amazing, the progress that's made. When April was born, I didn't have the social media network, I didn't have the community in the same way.

 

There was a little activity on Facebook, but I wasn't really active on there yet. And there was, like, an email group. So, I got connected with the parents of Pitt Hopkins’ sort of email thread, you know, it was in its infancy.

 

And so, I was able to connect a little bit, but it's nothing like today. You know, where you have, again, podcasts like this, where you have hashtags to search, you know, as you're going through this.

 

And so, I really feel grateful and happy that younger parents and kids that are born today, we have new families being diagnosed with Pitt Hopkins that show up on the Facebook group weekly. And we're still a community of about 1500 families worldwide.

 

Like, it's a very rare condition, for sure. But those numbers are growing sort of exponentially. And every time somebody posts a picture of their baby, I'm, like, giddy.

 

I'm looking at them, and I'm looking at the features that were deemed different about April that helped pinpoint that she might have a genetic condition, and I'm looking at them, and I'm going, “Oh, look at those beautiful pouty lips!”

 

And look at the eyes, and,  like, of course, they have Pitt Hopkins, I could have picked you up and I just want to, you know, reached out to those families, and be a resource and say, like, it's going to be overwhelming.

 

You're constantly going to have to make these hard decisions. But thank goodness for the internet. You know? Truly.

 

Madeline Cheney  23:07

Yeah. Because when you're in that black hole of being by yourself, and feeling like the only one, right, going through this whole thing, and you're left to your own vices, where you're like, okay, well, I grew up in an internalized ableism.

 

I didn't know that word, of course, but just to be like, oh, wow, I think a lot of, like, the tests that we're giving them in these therapies, and like, our goals for that, like, was that really for his potential and for him to thrive and be happy? Or was that to make him less disabled?

 

You know, and so I think that's kind of the question. And then, like you mentioned like, okay, so is being disabled bad? Am I trying to “fix” them? You know, and I think that's a really tough question to face, and can be uncomfortable, but I think it's really, really a key part of all of this.

 

Because if your goal is to make your child nondisabled or less disabled, then all the therapies, right? Like, do everything you can. But like, if you're reaching some kind of level of... I don't want to say acceptance, but just of like, of accepting your child for who they are, and like realistically looking at what their life will probably be like.

 

Or, you know, what are realistic goals to shoot for that really do serve them, and are not just trying to change things? I think is, I don't know, I just think it's an important thing to kind of think about.

 

Andrea Loveday-Brown  24:19

Real quick just to speak to how it works locally – for Larkin and myself and many others, our medical provider is also the earliest provider of therapies for our children.

 

So, my question is, have there been any advances with the therapists themselves to be challenged with working against that medical model of disability that really tells us that our kids need to be fixed, need to present as more normal, that, you know, their disability is not an asset.

 

There's no efforts to, you know, bring families together celebrate the positive aspects of disability.

 

And so, when you are taking your child to a medical facility to give them these therapies, I think that that medical model is immediately sort of thrust upon you. And so, it does make me wonder if those therapists might be a little bit further behind.

 

And I think it might be person to person, it's dependent, but they are working within a greater structure. And I guess the question is, is that system still very stuck on the mentality that disability is a bad thing?

 

Larkin O'Leary  25:31

I mean, I definitely think they are. When we did a presentation to our local occupational therapy place, and there were like three or four therapists in there that were crying, realizing, you know, the words they were using or the way they were talking to families not understanding that.

 

Like, for some reason, I don't know why it's so hard in this world for us to all just realize that we're all different! Disability, no disability, I have strengths, you have strengths, I have things I'm not good at. So do you.

 

I can't ride a bike, okay? But there are, like, disabled people who can ride bikes, right? Like, we all have things we're all good at. We all live our lives in different ways.

 

And as long as we are striving for that happy, and that being accepted for who we are, it's just interesting how you have to do it “this way.” Right? And it's like, but why, right? Like, some people are going to do it different. And that's okay.

 

And I think, I always say you don't know what you don't know, until you know. That's, like, my tagline. Because I feel like being immersed in this world, especially as a teacher, and for example – I had a student who was autistic in my class, and I was dead set on him learning to take notes. Because all kids take notes, and you have to take notes, right?

 

He had really great audio processing. He could listen to me without him having to write the things down, and it was just locked in his brain. And he would spout the information out.

 

But for some reason, as teacher, I was, like, dead set on him learning how to take notes. Because that's what we do. Right?

 

And so, when our society catches up to the fact that, like, we're allowed to do things in different ways, like, maybe our medical model, and our educational model, and all of these different things... and then, that will help shift mindsets.

 

As having a child, and the first person to meet my child telling me they're sorry that my child is born, like, you know? I mean, it starts from birth. And from there, you're like, oh, wait, am I sorry? Like, what? I don't understand what's happened.

 

I don't know. It leads you down the rabbit hole of understanding the “fixing,” and the what is okay, and what isn't, you know what I mean?

 

Madeline Cheney  27:36

What I think one thing that's really helpful with this is, like, parents and professionals, right, professionals that are listening right now, to look – and I say this a lot. I mean, people who listen to the podcast are like, “Oh, again.”

 

But like, to look towards disabled adults, and to look even towards, like, older disabled children. So even children more of your guys’ children's age, where you can see like, okay, I can conceptualize. Here is April in her wheelchair, going to school, tube fed.

 

And like, okay! Like, that's a life I could totally picture for any other kid. Like, this looks like a great life. You know, and just seeing the humanity in it, and being like, okay, so instead of trying to get my child to do all the things that I expected them to do – which is valid, fair, that's what we all expect to have.

 

This nondisabled child that's healthy, and does this milestone, and then that milestone, and you know, you kind of just expect these things. Again, because, you know, a lot of societal issues where, like, disabilities are not very visible.

 

But like, then, to look towards adults and older children and teenagers living with these disabilities and seeing like, oh, great, they have a great life. Like, why am I striving for this other thing?

 

I think that can really help us like warm up to the idea of, like, it is not the end of the world if my son is always tube fed. Look at these adults that are tube fed. And it's great. It's just another way of doing things.

 

So, I think that kind of... switching that. And I think, honestly, I think that is kind of the only way to truly move into that place, is by seeing these adults living with these disabilities. Seeing teenagers living this way, and the parents there, and being like, oh, it's great for them. Okay, it'll be great for me, it's fine.

 

Larkin O'Leary  29:09

Well, and like, wanting to give your kids other experiences. Like, we stopped speech therapy, and now James is doing dance. And he loves dance. He has taught all of his friends at school his little dance that he ends with, you know, like, he's here for it.

 

Like, why did I waste all my time spinning my wheels, having him do something that wasn't motivating to him? Now he's doing dance, he's moving his body, he's able to interact with other kids, and like, have fun with it.

 

Why don't I try karate, or horseback riding, or different things that he might love, instead of like spinning my wheels with something he won't, you know?

 

Andrea Loveday-Brown  29:46

Again, I think that's very much something that comes with as your kid gets older, and as you get a little older as a parent, and you're in a network where you're starting to see how other families do any of this, right?

 

Like, it's all a mystery, we're all running around just like chickens with our heads cut off, you know? It's wild whether disability is in the picture or not.

 

And when it is, it's so ingrained right out the gate that what you're doing is so different, that I will admit that this school year, and because my family has been and continues to be taking more precautions to avoid COVID, this school year feels like the first one where both of my kids maybe have a few more options.

 

But we still have to, you know, vet them for safety, for COVID safety, for just awareness. And as I was sort of plotting, my oldest does swim team, which is great, it's outdoors, it's every day, it's active, and also does voice lessons.

 

And so, I'm sort of mapping out what the schedule looks like. And it was the first time, this year, with a fourth and a sixth grader, my fourth being my disabled daughter, that it occurred to me that I could take the same liberty of just having fun with and thinking about what April does after school the same way any parent makes those choices.

 

Based on how their interests change, based on energy level, based on cost, based on literally the exact same considerations that I use deciding things for my older daughter.

 

Convenience. Lord knows, like, we've all made choices based on hey, if we're going to this side of town for one kid's thing, that therefore it makes sense to try the dance lesson, the horseback riding, or whatever, because we're over there anyway.

 

It's what any other family does. And again, I feel like you start off so lost, and so looking for direction from others, that it bogs you down a bit. You definitely can get lost in the weeds and forget how simple some of those choices can be.

 

Madeline Cheney  32:07

Yeah. What are your guys’ thoughts about, like, intensive therapies? Because I've heard some positive things from parents, that maybe being something that's, like, doesn't take over your whole life, it just takes over your life for three weeks. But you see a lot of results.

 

Or like, you know, maybe there's some pressure to do intensive therapies.

 

And also, let's explain what intensive therapy is, for those who are newer parents that are like, what's an intensive, like, what are you talking about?

 

Andrea Loveday-Brown  32:30

Yeah, so we enrolled April in a three-day intensive. And so, my understanding in general is that there can be these intensive therapies, meaning you are doing multiple days back-to-back of several hours a day. And if either of you can speak to specific ones, feel free to jump in.

 

But it could be three days, it could be a week, I've seen two weeks, three weeks. And so, often you have a family committing to sometimes travel, hotel, the whole thing to commit to bringing your child to a center where maybe they're meeting with multiple therapists throughout the day, that are using different strategies and techniques to try to – assuming maybe, perhaps, make a bigger leap developmentally with certain skills.

 

I'm not completely familiar with them, but I have noticed since becoming more active in the disability community on Instagram, I'm noticing a lot is posted about intensives. And you see this, like, tremendous amount of work.

 

In our case, there was a local group, Training of the Trainers, for the Annual Nathaniel method. I don't even know if I'm saying that, right, just a different type of physical therapy. That's supposed to be sort of intuitive, and all of this.

 

And I had a chance to have April participate in that for a very low cost, and a commitment of three days because this was training the trainers. And so, I took her there, and it was the first time that she had done multiple therapies back-to-back, like, for hours over the course of a day.

 

And she was quite small. She was probably two years old at the time. And it was truly the only time in the history of all the therapies we've done where, like, in between sessions, she was sobbing in my arms. She was so tired, that she couldn't rest.

 

It was a giant push, and I got the hang of how to make sure that she did get some rest, and that she wasn't as weepy about it, you know, but it was a huge challenge.

 

It was hard on me to see her pushed that hard. And I can make a direct link between some of the physical activities that they had her do, then, that were supposed to focus on certain skills like sitting up, from laying on the floor. Sitting up independently.

 

She started sitting up about three or four months ago, at age nine. I literally can see physically that some of that muscle memory is there from, let's say, seven years ago, when she did that. Does that mean it was worth it?

 

Madeline Cheney  35:22

Oh my gosh.

 

Andrea Loveday-Brown  35:23

The hardship on her! You know, and I'm sort of laughing so as not to cry, because you, again, in those early days, I think you do so much just hoping that something will, quote, click.

 

You know, whatever that is, I think you hear that a lot. “You do this, maybe something will click.” And you're hoping for these massive leaps. And it's not how life works. It's not how bodies work.

 

So, I tend to feel like those intensives, when they work for people, when the cost is not an issue, when the time is not an issue, I think that they can be great.

 

I think for myself, I worry about the cost being prohibitive, and I worry about the pressure to make that big of a sacrifice as a family.

 

I think when there are lots of videos going around online, you know, it makes me wonder for a young family, and that's trying to figure out what's best for their kid, I do worry that they might see that and go, “Oh, the only way to move forward is to take off work, and make all these sacrifices, and fundraise, and do this.”

 

I just think that when you see things over and over, it can get ingrained, like this is the only way to progress. And whereas I think that an intensive should be looked at the same way as any other of these therapies that we're talking about. That you can make the choice to take it or leave it.

 

Madeline Cheney  36:51

And it doesn't mean you're a bad parent if you don't do it, doesn't mean you're a bad parent, if you do do it. You know, it's just like, kind of leaving that open as, like, you don't need to feel that pressure either way.

 

Like you say, like, there's this draw to that type of thing. It's not even just doing intensives, but just the other thing, right? The other piece of equipment, or that other therapy, where it's like, we're working so hard on this one thing, and we've been working on it for so long. And maybe that's the one thing.

 

If I just do that one thing, maybe we'll finally, quote unquote, “get it.” Or, I'll offer this idea too, maybe your child will never XYZ.

 

I know that maybe sounds defeatist, or like, “Oh my gosh, no, I'll never give up on my child,” and I'm not trying to say that in a negative way. But maybe more of a, like, maybe there's a time, you know, to put up a white flag and be like, you know what? It's fine. They don't ever need to eat by mouth.

 

Or, you know, just to kind of, like, take a step back and analyze it that way, too.

 

Andrea Loveday-Brown  37:43

Absolutely. And I think... and you can cut this out if it sounds too judgmental, because it truly is the last thing that I want to be.

 

But I think that it is difficult for me as a parent to see that some of the imagery of what seems to be conveyed about intensives is this sort of, like, really work hard mentality. That the thinking behind it is, like, if you push, push, push.

 

And so, I do see, unfortunately, like, kind of a good number of videos shared of kids in distress during these particular types of therapies. And that worries me, because first of all, I think, like, those experiences are very private for a child who maybe can't articulate that they wouldn't want that shared.

 

But I think it can also just be damaging, because our kids are always working. Our kids, by design, or working harder than their nondisabled peers. And we don't need to see them in distress and crying to know that.

 

And so, I think if I was earlier in this experience, and trying to decide what's best for my kid or figure out what to do, that external pressure of, like, if you're not pushing your kid this hard, you're not doing enough, could be really detrimental.

 

Because I think we all feel that push even if all we do is get them to preschool that day. Even if all we do is like focus on the most important medical appointments and cut out the specialists for a few months to give ourselves a break.

 

And so, I guess what I'm really saying is that, like, we all need to be easy on ourselves, and trust that we're doing our best and lean on that community that can be provided through social media to help make some of those decisions.

 

Like the post that started this whole thing. Larkin and being vulnerable and saying, “I don't know if I can do this anymore. How do I make this decision?” Yeah.

 

Larkin O'Leary  39:45

Yeah. We haven't had any direct experience with intensives. We were going to do an intensive feeding therapy after James came out of the hospital – we had like a 40-day hospital stay, and we ended up coming home with a gtube.

 

And we were gonna try and do some sort of feeding therapy, but like, he's traumatized from those first two years where the doctors were saying, “Oh, he has Down syndrome, it's a texture issue, just keep feeding him.”

 

And I'm like, no, something's wrong with his esophagus. And then when he was a year-and-a-half, they couldn't even get a preemie endoscope down his esophagus, it was so strictured.

 

And so, we were going to do the therapy after the hospital, but it was cost prohibitive, we would have to fly to Colorado would have been the best one, stay there for two weeks, you know, hotels, and all of that. Our insurance wouldn't cover it.

 

But now, at this point, when I look at James and I think about moving forward with any sort of therapy, I think, like, so, is this for him to be able to survive and live? Like, no. We could puree foods for him.

 

In fact, it's actually easier and more healthy for him. Because like, my daughter? She'll be like, “No, I want a graham cracker.” And I'm like, “No, eat some broccoli.” And she's like, “No!” You know, and has her big fit.

 

But with James, he has those four meals that have fruits and vegetables, and you know, meat, and almond milk, and all good stuff. He eats nothing that is, like, processed food whatsoever.

 

And so, it always goes back, I guess what I'm saying, is back to what is best for the child. And what is it that's in my mind that society is telling me is the right thing, right?

 

Because I feel like a lot of things when it comes to therapy is, I'm doing this because it's what we do as humans. But is it? Like, it's just, like, what I've always experienced, but James is a different human than me. And so, it's okay for him to do things different than me.

 

Madeline Cheney  41:47

Yeah, that's really, really great. Well, here's a question for you guys. So, kind of like our last few minutes here, let's just say that there's a listener or two, or twenty, or whatever, you know, that are like,

Okay, I know exactly which therapy we want to rein back on. Or take a break from, or, you know, whatever.

 

What advice do you guys have for scaling those back, of quitting those? How do you have that kind of conversation with a therapist, and, like, how do you stand your ground if you get pushed back?

 

Because I think that's their job, is to get the therapies, and they have all the textbooks about how it's going to benefit them. And they don't have any idea what it's like to be in your shoes, and so I think you do get pushed back. So, how do you how do you navigate all of that?

 

Larkin O'Leary  42:28

I mean, I think, number one, you are the expert in your child. Those people – the schools, the medical professionals, the therapists – they are experts at their job. Yes, absolutely.

 

But you're the expert in your child. And so, if your child is under distress, if it's causing more harm than good, you're the one who sees that.

 

On the way to the therapy, and the therapy with the behaviors, perhaps. Oftentimes, though, James loves people, right? So, he's fine when he's there. But then leaving the therapy– “Bye!” Right, like, he will tell you when he's all done.

 

And so, you're the expert in your child, and you're the expert at your life and what works best for your family. And that's, like, my number one thing is your child being happy. And leading a happy life. And it doesn't have to look the same, it can be different. It's okay to be different.

 

Madeline Cheney  43:25

Yeah, I like that. And can I add really quick, the happiness of your child, and their siblings. If there are any.

 

Because, I mean honestly, like, the therapies were way harder on my daughter, Wendy, when we were doing in home therapies than they were for my son. I mean, the behavior was out through the roof.

 

And like, so I think I'll just add that in there, like, that is something to also take in consideration in all of this.

 

Andrea Loveday-Brown  43:46

I am realizing as you ask that question that it has always happened really organically for me. I have not had this situation where I made the choice, and it was, like, a hard conversation.

 

It was very much like working in partnership where we both sort of recognized, or it was something where, for example, a provider that is reimbursed through Kaiser, through our medical provider, has said, you know, “I'm turning in this report on progress.

 

And I'm getting some pushback that says that, you know, the progress is not quite as much as they would like to see in order to justify continuing the services right now.”

 

And my response was, oh, great! Cool. Okay, so we're gonna take a break. We're gonna...

 

You know, and I realized, which again, means I probably, if I had had the bandwidth to really think about it, probably would have ended happily six months earlier. It just literally hadn't even occurred to me.

 

So, having said that, I think making space, even though that feels impossible, but as a parent, anytime you are you may be looking at the calendar or scheduling something, truly pausing. Literally taking some breaths.

 

Like, how does it feel when I think about picking my child up, and physically sitting in the waiting room and going there? If it doesn't... it doesn't have to feel amazing every time, right?

 

But if you are dreading it week after week, that is worth continuing to check in with yourself. If there's a spouse or partner, check in with them.

 

We haven't really talked about this much, I know it's not 100 percent universal, but in my experience, it's very often that moms are the ones that are taking on a lot of the primary responsibility for these sorts of things.

 

So, I think that is a nice time to check in, and share that burden, and check in with a partner and say, like, “This is how this has been feeling.”

 

And I think another thing to really recognize for us, this has happened many times, where sort of the beginning of the end of services was, we just missed a bunch. We are just that family, and I'm sure there's lots of us.

 

When, you know, medical issues came up all the time, hospitalizations, et cetera. So, we would miss one week, two weeks, sometimes four or five weeks. And then suddenly, it was time to go back to setting up a new schedule.

 

And I realized, I had to be honest and say, that break was kind of nice. Like, can we revisit this?

 

And so, I do think the other thing for parents to know is that nothing has to go away forever. If you do eventually feel like, now this feels like a loss. This feels like something we miss; we want to go back to it.

 

There will be a way to come back around. And if it's not the exact same service provider, or as Larkin said, maybe it won't be physical therapy, but maybe it'll be dance this time. Because your kid is older, and he’s expressed a new interest.

 

And so, while it may be a loss in the moment, don't think of it as an opportunity that's gone forever.

 

Madeline Cheney  47:10

Yeah, that's really great. And I'll just speak from my experience, maybe I'm the only one in this little conversation that's had pushback when I scaled back on therapies.

 

But like, with the circling all the way back to the beginning of the episode where I talked about the feeding therapy, like I mentioned, I did get a lot of pushback of like, “No, but this is super important!”

 

But luckily, when I decided that, in talking to my husband, in horrible tears, like, it was this huge emotional just, like, meltdown of like, I cannot do this anymore.

 

So, hopefully this happens before that moment of total, “I can't do this anymore.”

 

In that moment, though, after talking about it and coming to this conclusion, I was so set on it. Like, yes, this is the right thing. And so, I think, like, really trusting your gut and like what feels right for your family, and then not letting them talk you out of it, and just being like, nope, nope.

 

Because I think like if you really can keep in mind, like, these people don't know what it's like. Like, for the most part. There might be the provider that also has a disabled child, but like, I think for the most part, they don't get it.

 

And you can, not necessarily in a resentful way, but just, like, they don't understand, that's okay. But I do, and I can make this decision for my family.

 

And I just think that, like, you know, you can also trust that, like, if that happens for anyone listening and you get pushback, like, we're here. We're standing by you.

 

And we all acknowledge that, like, as the parent, you are the number one part of the team and you know your child best, and your family best, and what's best. And stand by your guns. Because if they push back, like, that's okay.

 

Larkin O'Leary  48:39

They don't have to be the one going home with you at night, trying to get your kid to bed, or get them in the car. I mean, it's you, right? Yeah.

 

Andrea Loveday-Brown  43:45

Yeah.

 

Madeline Cheney  48:46

Awesome. So, I am just so grateful for you guys for having this conversation, I know it's kind of a finessed thing. And I love that we were able to hear from your perspectives as you're further down the road than a lot of us who are listening.

 

And I'm just so grateful for just all the insights that you guys offer and provided today in this episode. So, thank you so much.

 

Larkin O'Leary  49:05

Thank you for having us. It was fun.

 

Andrea Loveday-Brown  49:07

Thank you for making this happen.

 

Madeline Cheney  49:10

You can find adorable photos of Larkin and her family, as well as Andrea and her family, on the website, therarelifepodcast.com.

Also, check out the show notes if you want to connect with any of us three on social media. There are links to do so in the show notes, as well as a link to an episode I made way back in the early days of the podcast.

It is episode nine, and it is called, “Three Ways to Take Charge of Your Child's Therapy Team.” And I was so proud of it then, and I'm still proud of it now. It's definitely related to today's topic.

So, you guys, this was the last official episode of season seven. Season seven has definitely had its ups and downs, and I would love for you to join me as I share those in next week's finale episode.

In that finale episode, I'll also be sharing a little peek into season eight, and when that season officially kicks off. As well as sharing my thoughts on the three-year anniversary of The Rare Life. And thus, my thoughts on the podcast as a whole, and what that's been like for me on a personal level.

Don't miss it. See you then.