Hey, this is Jen, and this is a new iteration of Cerebral Palsy Health. It's Coffee Talk, and I'm here with Natalie Matrie, who I absolutely adore. And we've got our coffee. It's this morning and we've got a lot of fun things to talk about today, and I'm so glad to see you, Natalie, and
Nathalie (01:20):
Hey, it's so nice of you to do this now. So I'm Natalie and you. I'm the mom of a child with cerebral palsy. We've talked before, but I'm super excited as coffee time in the morning is the one time where we might just have a little bit of time to ourselves, and I can't think of a better way to spend it than talking with you.
Jen (01:48):
I love it. And yeah, I feel so fortunate that we had a little bit of opportunity to do that in person a couple of weeks ago, and that it just reinvigorates everything and kind of reminds us of why we do what we do. And I think for folks who I know, a lot of people know me with CP resource and recruiting for clinical trials and things like that. Natalie, you're pretty amazing and you do a lot of amazing work, and I recruit for one of the trials that you're currently engaged in. So maybe tell us a little bit about you. And I know you're a mom as well, but you're also a physician and a scientist, and the research that you're doing is changing the world for people with cerebral palsy. So maybe a little bit of your own introduction. Maybe not.
Nathalie (02:44):
Thanks, Jen. That's really lovely of you. But you're changing the world too. We all do it in our own way. So yeah, so I am a pediatrician and a neonatologist, so that means while I'm super passionate about all of pediatrics from zero to 21 at least, I'm also boarded in a specialty called neonatology. So meaning I also know how to take care of really early babies who've had some problems surrounding the time of birth. And then I did this specialty in what's called neurodevelopment.
Nathalie (03:33):
And I'm also a researcher, as you know, because I think it's really important to change the world one person at a time. But what research allows me to do is to try to have some really large scale impact, which is why I love working with the Cerebral Palsy Foundation because they really have this vision where they promote researchers to make their research happen in real practice. So I guess I'm a mom and I'm a doer, which is kind of synonymous in many ways, right? A
Jen (04:20):
Multitasker for sure.
Nathalie (04:22):
Well, and as you know, so researcher, but what I am is I'm the mom of two boys and who've had the, I don't know if they'd call it the privilege of being raised by someone who's not just their mom, but a pediatrician and a researcher. So if you ask them right now how they feel about that, I don't know. How does Bower feel about you? And
Jen (05:00):
He doesn't want to have anything to do with me, a 19-year-old, and he wants to be with friends, and he wants to be out and about. And mom is definitely not cool by any means. And it's funny because my life before Bower, I was the fun person and I was the fun one who was taking kids with disabilities out in the wilderness, and we were doing all kinds of great trips and doing adaptive skiing and all the great things that a recreation therapist does I was doing. And then even as a case manager, I was the fun one. And now Bower looks at me and he's like, I want nothing to do with you, which I get, and it's totally appropriate. And also, mom, I don't need to be that person. Other people need to develop their relationships with him. But yeah. So tell me where Leo is right now or where your boys are. Both boys. I always think about Leo because Leo and Bauer are about the same age, and obviously they both have cp.
Nathalie (06:04):
I have two boys. So Lucas is in college. You can see the Georgia Tech sweatshirt.
Jen (06:10):
I love it.
Nathalie (06:11):
Yeah, so I'm trying to be that mom who no matter what school their kids are in, has the bumper stickers and the shirts. Now that Lucas is at Georgia Tech, I get to wear cool Georgia Tech paraphernalia. I have to say I'm not a super sporty person, but yellow jackets are a big thing. So Lucas is 17 and he's there, and yeah, he's making some great decisions. One of those that's maybe not so great is that he's decided to do what's called pre-health, so he might want to become either a doctor or hopefully a veterinarian. I love that. I know. That'd be amazing. And then Leo, who's my oldest you is for, for Bower is away at school. That was a big transition going to the dorms. He is at Oglethorpe and he's going to be going to Georgia Tech.
Jen (07:21):
Okay.
Nathalie (07:23):
Yeah. So it's that big saga of moving away from home. And he is wanting to be an aerospace engineer.
Jen (07:33):
That's remarkable. And Oglethorpe, I remember living when I used to live in Georgia, I remember it being a very sweet campus and a nice insulated place for their students. And I was very fortunate coworkers back in the day that went to Oglethorpe, and I really loved visiting there. Why is he leaving or what's the story behind?
Nathalie (07:58):
Yeah, so I mean, he was really fortunate. He got a bunch of scholarships to go into college when he finished high school. And George is really great about merit scholarships with the lottery system that lets you have scholarships. And I didn't know about this before I moved here. And so he had a lot of choices to make. And I have to say that some of those choices were difficult because he hadn't necessarily told every school he applied to that he had cerebral palsy.
Jen (08:45):
Yeah, I mean that's pretty impressive. Well,
Nathalie (08:52):
Yeah. But the problem is remember when you fill out those common apps, you're supposed to say, do you need any accommodations? And I didn't get to see that application obviously, but there was nothing checked off. So I don't blame a lot of universities when you don't tell them that you're going to need a ton of accommodations if they're right before you say yes. They're like, okay, but let's talk about putting you in touch with the office of accommodations and making sure that we prepare for this in the same way when you're a parent, and it doesn't matter at what age your kid is, you're like, okay, anytime there's a change. And probably for any kid, whether it's a change of school, but especially with a kid with cp, when you're thinking, alright, a change of whether it's a house, a school or anything is suddenly a huge deal because you're thinking, alright, how does this change all the system I've put in place painstakingly so that everything sort of works. You know what I mean? And then it's like
Jen (10:11):
It just throws it. I know we've actually just had that exact same experience in a different way, and it's been hard. Certainly it's not easy to make a gigantic change like that and expect yourself or even expect Bower in the situation to just smoothly ride into it. And it is. And it's hard to look back and be like, did I do everything this?
Nathalie (10:44):
And I don't know about you, but one of the things that people don't necessarily tell you when you have, I remember having Leo when he was little with cp, he's two years old and I'm not understanding that change is going to be more difficult, not just for me, but for him. And I don't think anyone prepared me for that. That change is going to be a big deal. It's not just always go with the flow, even though you may go with the flow, which I kind of was a sort of like, ah, it'll be okay. We'll figure it out. But Leo was not that way.
Jen (11:26):
Yeah, yeah. No, and that's so true. And I think it always surprisingly, maybe not, but it always takes me by surprise. I'll think, oh, he's so easygoing and he is going to go with the flow. And then when we do make a change and you see how much it impacts him, it's like 19 years later and looking back, same thing. I had to make these accommodations. And nobody does tell you that. Nobody does remind you that you know what? It might take a little bit more. We might be adults and we've been there doing that.
Nathalie (12:05):
But I do try to tell the parents, I work in a clinic where I see children with CP zero to five, and I'm often the first person to diagnose them with my colleagues. And I'm like, okay, I warn parents. I'm like, so just remember some of the things that are going to make your child really determined are also going to be some of the sources of stress throughout
Nathalie (12:33):
Even early childhood. Because if your kid figures out really early in life that they're going to have to try 20 times, 30 times to get something to happen because their body, their mouth, their brain won't cooperate, but then they finally get even a small victory, what does it teach them? It teaches them if you try something harder and more times than you're going to eventually get it. And so I tell parents like, oh my gosh, you are going to think this is great because we want our children to be strong and resilient and determined, except just remember there are going to be times in your life where that determination, it's going to be not making your life easier, if that makes sense. Oh, absolutely. You know what I mean?
Jen (13:30):
Yep, absolutely. Absolutely. And I talk to parents all the time, and I always feel this about Bower too, but so many are like, they're the strongest, most resilient, and they try so hard. And I always used to think, and I still do, but Bower is a people pleaser too. And so he learned early on that the harder he tries and the harder he works, it's going to make other people happy. They're going to be so proud of him for his accomplishments. And so that also motivates him to try harder and do more. But you're right, it makes for a little bit of,
Nathalie (14:12):
I mean, think about the terrible twos, right? So for me, when I think about that, it's the perfect example because it doesn't matter with your kid what your kid with CP is at birth. By the time they hit about a year and a half, the terrible twos always start early. They begin about a year and a half edging until two, and then this angel baby transforms into a kid who just is so determined about everything. And I don't know how Bower was, but Leo was totally this sort of little Gandhi kind of boy. So he had figured out that one of the ways that he could get stuff from his brother, from me or anyone was there is a lot of strength in just saying no and not budging. He was the king of, I'm not going to budge on this. So while some two year olds would throw tantrums and stuff like that, Leo didn't physically have some of the things that would let him throw tantrums. So his tantrums were these, no, nope, basically not going to do it. And it was like the wall, the wall. And that's I think one thing that the pediatrician had not prepared me for that the terrible twos don't always look the same, not just for every child, but when a child can't necessarily move or say or do the things, they're still going to find a way to put you through those terrible twos.
Jen (16:10):
You're right, you're right.
Nathalie (16:13):
What worked for you?
Jen (16:16):
I was thinking about that when you were saying that, and he's still a no person. He's still that guy that he puts his foot down and when he doesn't want to do something or if he's not interested in it, it's a hard no. And I feel like he was a pretty easy baby after two. Before two. He had a really rough, had a rough road, but I think it was almost like when he got to be that age, he was kind of coming out of his shell and finally able to try things that he wasn't able to try before. And I feel like his early course was a little bit rough with some surgeries and things like that that kind of screwed everything up where by the time we got to two, I was exhausted, but at the same time I was like, okay, we got to catch up. It's time to try to catch up and let's get all these things on board so that we can help you progress. So maybe it was a little bit different, but he was definitely the no kid. And at that point we were trying to say, Hey, it's time to have fun. It's time to get out there. We got to do things and we got to get out of our shell and get out of this funk that we've been in and move forward, I think I don't
Nathalie (17:40):
Know about, so what worked for you? What worked for you when think about the times where he was little and there was that No, what did you do to get past it?
Jen (17:53):
We'd usually just go do something different.
Nathalie (17:57):
So redirect,
Jen (17:58):
Redirect and shift and look at, he's not the kind of it we can tell him. He'll be patient and he'll wait. And he's probably the most patient person I've ever met in my life. And I think sometimes it was just a matter of, let's take a moment and let's stop and redirect, do something different or just go and go for a walk. I mean, for us, he was happy being outside and he still is that way and he loves going on walks or being pushed in his stroller at that time or being in the wheelchair. Just getting outside and taking a breath and getting a breath of fresh air is always good for him.
Nathalie (18:48):
You're doing exactly. That's the advice I would get and I would give. Right? Which is really funny because I would get that advice, redirect shift, things like that, and yet he could outweigh me. I will just tell you, he could outweigh anyone. I remember reading this book by Deborah Tannen who wrote, it was called, I think you just don't understand, but she also wrote about the difference that in the way people talk, and I still remember reading this one book, which was about the way Japanese moms raise their children without using the word no, no is not a word that they would use because the example I think she gave was when a child doesn't want an orange or a clementine that you're putting in front of them and they, let's say they throw it or swatted off the table or something like that. She said a Japanese mom wouldn't say no. Whereas our first reaction is, no, don't do that. Right? But with a kid who just has figured out that basically he can do something as much as he wants, and eventually it will work if you swat at the fork so that it eventually makes the orange fall, even though you can't necessarily reach for that orange and your arm won't cooperate, you're going to find a way to throw it off the table and then be really satisfied with yourself. That makes a lot sense.
Jen (20:36):
Hard, right? Yeah, it is. That makes a lot of sense though. And it's similar to, I know a little off topic, but similar to what I learned early on with early powered mobility and people talking to therapists and talking to parents and these kids learning to drive, but they're not really learning to drive. They're learning to explore. And if you say no, or if you put these restrictions on them, they're not going to actually learn how to do it as well. Whereas if you let them crash and if you let them, which is terrifying, right? I mean, it's terrifying.
Nathalie (21:15):
It's not, but it's also frustrating, right? So we're learning, it's like no redirect. Instead of saying, no, you redirect. I think she said something like, instead of saying no, say, well, how do you think the orange feels about that? Or something like that. And I'm like, but at the same time, there's part of me that's worked so hard for my kid to move that when he manages to swap that orange off the table, there's a part of me that's like,
(21:47):
But I can't show that because it is really inappropriate behavior. And so you're caught between this really hard place where if you react one way, it's encouraging him and his behavior and his toddler behavior. You've got the mom of the toddler, but you've got the mom of the toddler with CP who's like, yeah, this is freaking amazing that he was able to do something that every other 2-year-old gets to do. And so then you're like, okay, I got to bring it back to the fact that discipline and how we reinforce a kid's behavior should be the same whether they have CP or not, because as a parent, I know that's the right thing to do. You redirected. I was like, let's not do that because, but it's so hard because all the things that you're told to do for any other kid, it's that little inner voice that's fighting with you that's saying, yeah, but he has cp, right?
Jen (22:55):
Absolutely. Absolutely. What was it thinking about you being a neonatologist and a pediatrician, and when you had Leo and you went into the nicu, and I can't imagine what that's like to have all this knowledge about NICU and what's happening with the babies, and then to all of a sudden have this happen to you and you go in and you experience this. Is that okay to ask you about that? And I know,
Nathalie (23:29):
Yeah, now, right now, obviously at the time, probably not. Fortunately, I wrote a lot of it down because some people told me, from a neuroscience point of view, I know it when you're exhausted, you can't fully remember things. The brain doesn't form memories when you're in a constant state of exhaustion. So I wrote a lot of it down, and it's a really good thing because I think I wouldn't have really remembered it. Sometimes I read what I wrote during that period, and I'm like, oh, yeah. So I was fortunate in the fact that people told me to do that. I think honestly, I was super, super lucky, not because I was understood, but on the contrary, because there was this amazing social worker and I had the best nurses and nurse practitioners taking care of Leo. And what they did is they really quickly recognized that what I was doing was going through something that was going to be more than just an adjustment I was going full postpartum depression with. There were moments where it actually converted to PTSD, and so I received mental health support. I was really lucky. There was this amazing doctor, she was both a psychiatrist and an obstetrician, and so her name was Diana Dell. I still remember her, but they put me in with her, and I remember her saying, if someone had devised and forgive me for using the word a hell just for you, this would've been it, right? You know everything. You know what your child is going through, and there's zero way anyone can comfort you because you know that the comfort is not true. It is just platitudes,
And it was actually really, really bad. I mean, there's no way to say it otherwise. I mean, knowing is not always a comfort, not in an intensive care unit because you just don't find comfort. I mean, the only comfort I found was through faith and hope, not through rational things. It was just firmly believing, having this hope that was really deeply ingrained that this too we would be able to deal with. But it definitely wasn't the medical part that helped. But was the medical part of Dr. Dell giving me counseling and Zoloft?
Jen (26:48):
Exactly, exactly, exactly. And I think that the PTSD part of it is finally being recognized more and more in these situations, especially in parents who have children with complex needs, and hopefully there's support. It's being recognized whether or not the parents are getting the support they need is,
Nathalie (27:14):
I do think that increasingly it's recognized that, and we're talking about cp, but it's the NICU in general, that trauma-informed care is a real thing that people, there are entire teaching modules about it for everyone from trainees to doctors to everyone else, because not realizing that the trauma can have a lasting impact. That combined with, by the way, the complete hormonal storm that happens when you have a baby. So the two together is just really bad. And then you can't forget dads because dads are going through that too, or any caregiver. They're all going through that, whether it's and that trauma, it's not just for the natural mom. It could be for the foster parent who decides to take care of this child, the adoptive parent, the ones that are coming to the NICU and no one can prepare them for what's going to come. And it is traumatic. Yeah,
Jen (28:37):
I definitely think that it tends to rear its ugly head throughout as you keep moving in your child. I just know this from my own personal experience. There's things that I almost call them like micro traumas that continue to happen and continue to bring you back to that place. And it's not acceptance of the CP or anything like that. It's just this fight and these memories that are just, they're traumatic and they're really hard to, there's just things that throughout IEP meetings, for example, every time I go to an iep,
Nathalie (29:20):
Oh my gosh, accommodation,
Jen (29:23):
Exactly. I don't know why that is such a trigger for me, but it's right before IEP meetings and all of this stuff that happens before IEP meetings, it is so horrible to me. And it's almost, but it brings me back to memories from the nicu. It brings me back to memories from the surgeries after the NICU and the horrible things that all of the bad things are somehow tied to IEP meetings, which is really amazing to me and just little things. But yeah, going to accommodations, it just kind of brings you to, it makes a lot of sense. That would be
Nathalie (30:04):
Tied. There's stuff sometimes you don't even know what's going to happen. I still remember the first time I felt like I was, it's this feeling of being suddenly you're at the bottom. You don't know how you landed at the bottom of this super dark deep, well, you can barely hear anything. You can't see much, and you're there, and it feels like, I don't know, you're just falling right in the middle of the darkness and trying to claw yourself back out at first until you're given the tools to do it. It's so hard. And I remember at first I never knew what would trigger that happening. And the first time it happened to me that I realized, oh, there's a really big problem was Leah was going home and right before he went home, he had a head ultrasound
(31:05):
And I saw the head ultrasound. Now bear in mind, I see the head ultrasound and I'm seeing it also through the eyes of the doctor, but just seeing the grainy black and white picture was enough to trigger the, well, I fell down the dark. Well, I couldn't hear or anything else anymore ends that despite seeing someone. And so it just was like I got given the tools over time, and I was very careful whenever I saw a black and white picture that could vaguely remind me of my child's brain. So I was super, super careful. I approached it with tools that had been given me by my mental health provider, but it took a really, really long time and not knowing what black and white picture was going to trigger that, it was crazy. And you talk about accommodations, and I think we all have what it is, whether it's a meeting with someone that reminds us of something, and I think it gets better over time. I don't think it's because time heals all. I actually don't.
Jen (32:30):
I agree.
Nathalie (32:32):
I think it's because you just learn the tools that are going to get you through it. Whatever those tools
Jen (32:40):
I've found, and it's interesting for me is that through my work, it has been provided a tool even in recruiting for your trial in particular.
(32:55):
Yeah. And I'll tell you why. When I'm talking to these families and I'm screening them for trials and trying to help match them to different clinical trials, sometimes I ask me a brief history, tell me what happened. And I know that it's hard for them to do that, and I don't want them to have to relive it. But sometimes, and hearing their stories, I can relate to them and relate to the families, and it ends up being maybe a side conversation. And at the same time, I know that I'm able to help them and give them some resources that I didn't necessarily have. And so in some ways it makes me feel really good, but it also helps me heal in my own way and know that things are different for babies now than they were then.
Nathalie (33:52):
Oh, absolutely.
Jen (33:54):
And that there's something we can do about it. And it might not change Bower's trajectory, but it's not going to stop me trying to figure out what might help him now. And it reminds me. So they give me the energy to keep seeking out what's going to help him now and how to best parent him now. So I don't know if that explains it well, but it's definitely helped me on my journey with him and dealing with some of the things that definitely have caused me strife and trauma through the years.
Nathalie (34:32):
So going back to what you said, because it's funny you're talking about this, but you said, I used to be the fun one. And so you talk about healing, and we can talk about that some more because it's huge, right? It's a process and it still isn't over. But if you were to say, are you still the fun one now or how would you describe yourself after all of
Jen (34:59):
I think we're still the fun family. I mean, we are definitely, and I think my husband really drives this too, as we really do go on adventures and we try to, I've always felt like from the very beginning that Bower was going to do everything that we get to do and we were going to include him. And that was actually advice from his neurodevelopmental pediatrician who to this day adore. And he said that he's like, include him in everything you do. And we were the fun family before we were living in Asheville, Carolina, and we were there to go camping and mountain biking and kayaking and do all these outdoor things. And we ended up actually being great friends with our neonatologist. And he would go camping, bring his family with us. And so yeah, I think we are still the fun ones. I think Bauer. And he does, I mean, we go on fun adventures and I do think that I am still the fun one at least I'd like to. Yeah, that's
Nathalie (36:08):
Awesome. I was never the fun one, so that's why I'm like, but I totally, I've seen you and you totally are the fun one. You meet at conferences or places like that, and you are definitely the energetic, fun, I wouldn't say necessarily life of the party, but definitely energetic one, the one who gets people going. And I would say that you are the fun one, but I think about, I was always the geeky one. I know this is going to be a shocker to you, but I'm like the big dork, the big science dork. And it's funny because what you said about we're still the fun family. I mean, with all of Leo's cp, me being a single mom, all of that, two kids, they ended up being my little geeks. And we were the geeky family,
(37:07):
So we were the people we drove in the minivan called The Odyssey, by the way, even though it was not Odyssey, Odyssey, cheap piece of crap, but that's okay. It was a minivan. And it got us to the Huntsville, Huntsville, the Alabama Space Center where we had a membership and we would drive because they're actually very friendly to people with disabilities, so they're awesome. And so we were that family who would go and when my kid had the feeding problems and threw up everywhere. So that's why the minivan, it's a good thing. It was a really great because, oh boy. But I think about it, and it comes back full circle, right before Leah was born, I was the geeky one. And all that happened is that we ended up being that family, the geeky family. And so what you said is you were the fun one and you ended up being the fun family. I think it's so cool because it says who we are profoundly and who we are. We may have a kid with cp, our whole family may be dealing with it, but ultimately our identity didn't really change because the CP was just that. It wasn't what made us us. Right,
Jen (38:36):
Right. No,
Nathalie (38:38):
I think that's really cool.
Jen (38:39):
I think that's really cool. It's a really good point.
Nathalie (38:42):
Whether you're the fun one or the geeky one. Exactly. And now we're friends. I know I totally would not have been friends with the fun ones who were, I was the kid in school who was reading a book under the stairs to try to not get beat up, didn't do any sports or anything like that, was hiding away. And only friends were the other geeks that everyone picked on. I definitely wouldn't have been friends with someone like you who's super active and probably really popular.
Jen (39:21):
I don't know that I was so popular. I was with the artsy crowd and yeah, I was with the theater group, but we were fun. We were a lot of fun. I definitely wasn't like the jocks and the athletic group and the sorority girls and stuff like that. I was more of the artsy fartsy fun crowd in that respect.
Nathalie - No, it's so funny because I think it's so cool that you are the fun family. And I would agree. There's no way to say any other than you think about what my kids want to do with life. Our favorite pastime when they were little and growing up. And you know how when you're exhausted at the end of the day, but you still don't want to shortchange your kids, right? You're like, okay, I have just had the longest day and it's been pretty crap at work and everything else. And the kitchen is still a mess, but it's time for bedtime, so you want to spend a little bit of time with your kids, and so what do you do? And I remember I was so exhausted. I put one kid on each side of me in my bed right before bedtime, and we would watch, this is how evil I was, 20 minutes of an episode of Star Trek, the Next Generation.
Jen (41:17):
I love it
Nathalie (41:18):
Because geek, right? And then we, I'd pause it at 20 minutes no matter what. And you imagine what that ended up with. But it's so funny because it was those shared that didn't depend. It had nothing to do with cp. It was just me like any other parent, desperate to spend just some time with my kids doing something that mattered to me and hopefully would matter to them someday, but being too freaking exhausted to play Tiddly Winks or something.
Jen (42:05):
Right. Well, that could bring us onto a different topic. And switching gears a little bit and talking about a topic that you and I have talked about a little bit is sleep moving forward. And we can talk about that now. We can do a different coffee talk another day.
Nathalie (42:31):
How about we save it? How about we save it for people?
Jen (42:41):
Yeah. Yeah, because I feel like that's a big one. It's one
Nathalie (42:45):
That, yeah. So how about we say being exhausted and sleep. Let's talk about it next. Coffee talk.
Jen (42:54):
Let's do it.
Nathalie (42:55):
And to not exclude anyone, just so y'all know, I do have my tea in the morning, not just coffee. It just depends. I'm a big tea person too, so I just want people who have tea instead of coffee to feel like they can be with us.
Jen (43:11):
I absolutely agree. And I have tea. Does that count?
Jen (43:15):
I definitely have my coffee in the mornings.
Jen (43:19):
Right? That's a good point. That's a good point. Well, let's do this again next week and we'll talk about sleep. And I think today, I've really enjoyed my time with you today.
Nathalie (43:32):
Oh, me too.
Nathalie (43:46):
Thanks, Jen. It's so fun.
Jen (43:49):
It's wonderful. And I'll see you next week.
Nathalie (43:51):
Take care.