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Episode 55: Laura Will - Polymicrogyria
14 Plays23 hours ago
Laura shares her experience as the mother of Alden, a child living with polymicrogyria, a rare brain malformation. With striking honesty, she speaks to the challenges, unexpected joys, and the lessons she's learned about resilience and acceptance. Laura’s narrative illustrates the struggles of parenting a medically complex child, from grappling with sleep deprivation to fighting for appropriate resources in the school system. Yet, through it all, her unwavering love for Alden and her fierce advocacy for his dignity and well-being shine through.
The song Laura chose is What a Wonderful World by Louis Armstrong.
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Transcript
Introduction and Guest Overview
00:00:01
Speaker
Hi, I'm Sylvain Bertolo, and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who leave them every day. My guest today is Laura Will, and we're going to talk about her son, Arden, and polymicrogeria.
Impact of Alton's Condition on Daily Life
00:00:22
Speaker
Hi, Laura. Thanks for joining me on the podcast. How are you doing? I'm doing well. Thank you for having me. You were talking about sleep deprivation just now, so is it a ah lot of sleep deprivation for you?
00:00:38
Speaker
It is. That is definitely a part of the journey. Well, probably for any parent with young children, that's a part of it. For Alton in particular, that kind of newborn phase of being up once or twice every night has extended into the fourth year of his life. um So We occasionally i get a really good night where he sleeps all the way through, but he lives with fairly severe disability and that can impact his comfort when he's sleeping, yeah his ability to roll over. We'll talk about that a bit more.
Early Signs and Diagnosis Journey
00:01:22
Speaker
I love starting with a song, so would you be able to tell us which song you chose and why? Yeah.
00:01:31
Speaker
It's a classic, What a Wonderful World um by Louis Armstrong. and And this is Alton and my song. I'm sure it's many other people's song, but I was very pregnant and walking to the hospital to for a normal check-in. We thought he was a totally healthy, normal baby. And I heard this song and by a street musician.
00:02:02
Speaker
was playing it and it just was this beautiful moment of anticipating a child arriving and the lyrics of, I hear babies cry and I watch them grow. They'll learn much more than I'll ever know. It just brought me into this sense of wonderful anticipation and continues to this day. Yeah, yeah I love that song. It can be interpreted in so many different ways.
00:02:31
Speaker
So you just talked about already olden and this anticipation. ah So going back to to the beginning, when did you realize that olden needed more attention than than you expected? Yeah, he was about four months old, although I think my kind of mummy instinct knew that something perhaps was a little bit off when he was a little bit younger. And I think our story begins like a lot of where stories do, where it was just this kind of innate gut feeling, this like visceral something seems wrong, something seems not quite right.
00:03:23
Speaker
And, um, you know, he was so young that he really hadn't officially missed any milestones yet, but I felt like he wasn't tracking, um, toys in the same way with his eye gaze. And he had a little more kind of spasticity and strange movements that heightened my awareness to, um, get him a little more, a little more attention. Yeah.
00:03:48
Speaker
And of course the initial evaluation from the primary care physician was, her conclusion was anxious mom. she She you know felt like my concerns were just coming from a state of anxiety and and not reality. And boy, did we prove her wrong. Yeah, I bet. Feeling that something is not quite right is not enough to go and get your your child checked by the medical system. So was there an event that made you go to the doctor's
00:04:28
Speaker
Yeah, we were this Memorial Day weekend. I can remember it um very clearly. And he was and sitting in front of me and started to tense up, almost holding his breath and getting very stiff. And it was in a repetitive way where he'd get tense. His arms would go out almost like he was as doing a zombie walk. And then he would relax for a second and then it would happen again and relax for a second. And I had seen this happen before and that's why I initially went to the pediatrician, but this time I was able to grab my cell phone and take a quick video of it. um And when I called the on-call pediatrician's office, got a neurologist on the phone and was able to actually text that video to
00:05:22
Speaker
the pediatric neurologist who when they saw that said, why don't you bring him into the emergency department? And we were admitted that evening and i over the course of kind of 48 hours, he was evaluated for eyes infantile spasms or or seizures on a EEG.
00:05:46
Speaker
And that actually looked really good. And then the last step before discharge was an MRI. The results of the MRI were were life-changing for all of us.
Understanding Polymicrogyria
00:06:00
Speaker
Is it typical to get an um MRI? Or were you lucky to get an MRI that early? Because it it seems like they took you seriously very early on, which is great.
00:06:12
Speaker
I think there were a couple red flags in his neurological exam. i'm There was some kind of underlying hypertonia, this like stiffness that I had kind of intuited as a as a mom holding him.
00:06:28
Speaker
But I do believe that the MRI timeline was probably expedited because we were inpatient and because it was the height of the first major wave of COVID in the Boston area. And so they just were trying to reduce our number of contacts with the medical system. And so it was just like, okay, we're here now. We're going to do this now.
00:06:53
Speaker
Yeah. So in a new way, you were lucky to get that um MRI that that led to to, I guess, the diagnosis. So did did did it actually lead to the polymicrogeria diagnosis straight away? It did. It was a one parent only rule in the Boston hospital at the time. So I was alone in the hospital with Alden when the neurologists came in to give this initial diagnosis and they did an extraordinary job of having me sit down, bringing in saltine crackers and Gatorade i because I knew I was going to feel and
00:07:41
Speaker
nauseous and dizzy um and having a second clinician there to help kind of manage Alden and tend to him as I digested the news with my husband on speakerphone. three And they really just did this like high level, you know, he was born with a brain malformation, the initial results indicate, but we'll get a more thorough reading of the MRI, you know, later today. And then they discharged us home.
00:08:09
Speaker
so that we could be together as a family when the phone call came from the pediatric neurologist at, I think it was 9 PM that night where she really dove into more of the details of how severe the malformation was and what that might mean for Alden. Okay. Could you tell us a bit more what polymicrogeria means then? How does it affect Alden?
00:08:35
Speaker
Absolutely. So polymicrogyria is poly as many, micro is small, and gyria are the folds in your brain. So he has many small folds throughout his cortex, which is kind of the outer layer of the brain. And there's a huge spectrum of patients with polymicrogyria, some individuals find it as an incidental finding on a brain MRI you know in their 30s, and they just have a very small area of their brain that has this i'm you know different folding pattern.
00:09:15
Speaker
It predominantly affects the motor cortex in this paracelvian area, which is kind of where you integrate speech production. So a lot of patients are i'm you know don't communicate with verbal language.
00:09:31
Speaker
im And for Alden, it was a fairly severe presentation, so it and has affected his i kind of entire motor cortex, many lobes of his brain, including his cerebellum, where you get um kind of balance and coordination. so um Well, that is his causative diagnosis.
00:09:55
Speaker
i' when i see you know When somebody approaches us on the street or is curious what's going on with him, I often use the more commonly understood umbrella term cerebral palsy because that is how he presents to the world. That's kind of a more functional diagnosis and it's one that people more often than not have seen or heard of before and sparks perhaps a little bit more understanding than ah a rare term like polymicrogyria.
Mental Health and Support Systems
00:10:29
Speaker
Yeah. So how how are you when when when you get a diagnosis like this? I guess you go um on the internet and you start reading all the scary things, ah but like from a mental point of view, what went through your head?
00:10:49
Speaker
I mean, it was the darkest days ever. I had really been struggling with postpartum depression already and this layered on top of it was very tricky time. I have to say that the diagnosis, they initiated a referral to a palliative care team at the same time.
00:11:14
Speaker
which offered this whole another layer of support. um It was another group of clinicians, including a social worker who could just think about um and take the time to talk through what this meant for Alden. What are we thinking about in terms of quality of life? And how do we support mom and the family? And she connected me with a counselor very quickly so that I could kind of gain control over my own mental health as that was kind of essential to the care of Alden, right? If mom's not doing well, the care in the home's not going to do well. So that was a ah pivotal piece of the first couple months.
00:12:00
Speaker
And you know we learned pretty quickly that he was going to live with moderate to severe physical disability and moderate to severe cognitive disability. He was going to likely experience seizures and that those seizures would become more difficult in control with time. And you know a lot of that has played out i'm over the course of his first almost five years of life.
Seizure Management and Education Challenges
00:12:32
Speaker
And some of it has not, you know, his seizures, which we were told would become daily have been really well controlled on just one seizure medication. He hasn't had a seizure in two and a half years. So that's a big Delta from what we were expecting. But with all of this, I would say the biggest theme is uncertainty.
00:12:58
Speaker
it could change tomorrow. Yeah, especially with medication that could he could get used to and then can stop working from from one day to the next. There is this just hyper vigilance where it's like, yeah you know I heard once from a doctor, and you have to be careful that they don't because all the medications are weight dosed, so whatever his weight is, right? And so a child is constantly gaining weight, ideally. And um so it's, you know, every six months I'm messaging the neurologist saying, can we make sure his kepra is at the appropriate dose? And, um you know, that that's one of probably a thousand little things that it's like you have to kind of keep on keeping on
00:13:49
Speaker
and be aware of as a parent of a child with multiple disability and and epilepsy. Do you still get the same level of support? Yes, I would say it's even more layered. And I feel like even with neurotypical families and parents are like,
00:14:14
Speaker
bigger kids, bigger problems. And I would say that that's very true for us as well. you know as he is grown out of a toddler body that can easily be picked up and you know put into diapers and um plopped into a stroller, the level of care and attention that he requires to just move about his day has increased. And the amount of equipment that he needs um to fully access
00:14:50
Speaker
the day-to-day life that he wants to live at school, at home, in the community. you know It takes a lot of i equipment and um bracing and personnel to allow for him to live kind of the full life that he deserves as an awesome little four-year-old.
00:15:16
Speaker
Yeah. yeah but It's great that that you get support because of I've heard of families struggling to actually get the right level of support that they need. And and also I've heard that you actually need a team. like You can't do it by yourself. you You need people with you, people who understand all the and get to know him so that you get the right level of support to to then help yourself as well. Is that right?
00:15:50
Speaker
i I like to to kind of joke that Alden's a job creator um because he truly helps employ an entire staff of physical therapists, occupational therapists, communication therapists, feeding therapists. We have you know a surgical team. we have um and a G-tube and nutrition team. um and And now we're starting to layer in more seriously an academic team where we're you know working with and sometimes against, it feels like, the school system to really be fighting for for what he needs. And I would say, yes, we have a lot of support.
00:16:41
Speaker
And it is an endless battle to maintain that support around him. yeah I want to focus on something you just mentioned, the the school system. So why is it a battle? And I've i've heard about the inflexibility of the school system. I experience it myself with my children who are not at all on the same level as olden, but still. But yeah, could you talk more about that, please?
00:17:20
Speaker
Yeah, I think it probably at the heart of it comes down to money and resourcing, right? And they need to accommodate for every child in the district. And I am up there with you know Alden as center to our world and our advocacy dreams, but you know they need to meet a budget, but it is wild that I recently read a statistic that only 16% of children with cognitive disabilities are integrated in in an integrated classroom. And that brings very true to to my upbringing. I mean, I haven't been in grade school in 25 years, but I never studied alongside
00:18:19
Speaker
a child or had regular interaction with a child who lived with cognitive or really even much physical disability. They were in sub-separate classrooms, right? And that that continues to this day to some degree, although it is hugely improved year on year. But when I think about meeting Alden's needs,
00:18:45
Speaker
It's really interesting because while we've started in the preschool years to want him to be in a fully integrated classroom with neurotypical peers, our perspective is starting to shift where maybe a fully inclusive classroom is not going to be meeting Alden's needs in the future. And so we start to think about out of district placement and perhaps a school that is specialized to be able to you know where Alden is not the exception, um where he's not kind of the one-off child who's using a communication device to talk and a gate trainer to walk and a G-tube to eat, right? But maybe that's the majority of the classroom makeup. And so then the ability to continue to kind of titrate and i the expertise
00:19:40
Speaker
in that classroom may be much greater. and so But that sort of school environment and out-of-district placement is a private special education school, and those are very expensive.
00:19:55
Speaker
Yeah, yeah. Yeah, and I find it extremely frustrating. The school and I know and I completely agree with you. Like it's a it's a budget point of view. It's difficult to adapt to every single child. But at the same time, I feel like nowadays with so much focus on inclusion, diversity,
00:20:22
Speaker
We hear so much about that in the adult world, but then so little changes at school level where actually this is where it it can be really damaging, lack of inclusion and diversity, lack of interaction because of differences.
Internalized Ableism and Advocacy
00:20:46
Speaker
So yeah, that really pains me.
00:20:50
Speaker
I think it does create a cycle um that plays into kind of ongoing ableism within our society, right? And ableism is this term for discrimination or prejudice against somebody with a disability in a book I'm reading right now called Demystifying Disability by Emily Laddow. She defines it as these attitudes, actions, or circumstances that devalue people because they are disabled or perceived to have a disability. And I think when we're not
00:21:27
Speaker
working alongside um somebody with a disability, like for instance, um you know, having a school where for people who have are hearing impaired, right? And if, you know, half the board or more than half the board for that school is not hearing impaired, then like there is inherent ableism and within that system, right? Like there just needs to be greater integration in all areas. Yeah, and I think it would lead to greater understanding as well. And honestly, it would have made the journey to becoming the mom that I am now for Alden a lot less painful. Because the beginning weeks, months, and even years, I have had to identify within myself
00:22:27
Speaker
ableism and prejudice and really have been taught by, you know, adaptive athletes and some of his clinicians have shown me the light in terms of the value of Alden's life, which was not inherent to me at the beginning when all of my expectations about the type of child and what the life they might live, um, went up in smoke with this diagnosis. It took me a long time to meet Alden where he was at. And that was really because of this internalized ableism. Despite my education and empathy, it, it was deep seated.
00:23:19
Speaker
Yeah, i can I can completely empathize with that. So could you tell us a bit more about that journey then? How did you get to where you are now? It has been a process, not a destination.
00:23:42
Speaker
um I would say, you know, in the first year, I got more and more comfortable with the concept of having a medically fragile child and a child who I might outlive. But then I have this very distinct memory of going shopping for his second birthday and walking into the toy store and looking in the aisle for toddler toys and seeing all these able-bodied toddlers playing
00:24:21
Speaker
with their fine motor skills and gross motor skills that Alden just had not met yet. And all of a sudden realizing that all the acceptance I had reached for having an infant who was living with disability had not yet translated into having a toddler who would not and could not toddle. And so it's this kind of ongoing practice of acceptance and ongoing practice of grief. And I've really taken the lead from others who came before um and appreciated, you know, people in the um adaptive athletics world and for thinking and kind of calling me out on it and saying, you know, when I went to go buy Alden's big sister a bicycle,
00:25:19
Speaker
I was curious enough to ask, you know, what sort of adaptive bike might we be able to get for Alden? And that led me to this incredible woman um'm who I had on the phone and then later that day she showed up with an adaptive bike that another child had just outgrown.
00:25:39
Speaker
And so it's just these small instances of, oh my gosh, okay, now both my children are biking side by side and it looks very, very different, but kind of being shown the way by people whose hearts have already been touched by children and individuals like like Alden to help me soften into this journey. I've also found Emily Rapp, who is a im a writer and a mother of a child who pat was born with infantile Tay-Sachs, so she she passed quite young.
00:26:21
Speaker
and she Emily wrote an opinion article in the New York Times, i'm which was where I came across first came across the term a dragon mom, and so this term is a wonderful term that can speak to and label a mom or a parent of a child with a life-limiting illness. And how she describes it is that these parents i'm you know don't get to launch their children into a life i'm
00:27:01
Speaker
of, you know, six decidedly acceptable success beyond them. ah Instead, we have the terrible and extraordinary privilege of helping our child live a life of maximum dignity and minimum discomfort. And I could really attach myself to this idea of being a dragon mom. im You know, all of this paperwork that you fill out for these endless appointments where you're, you know, identifying all the milestones missed and the, you know, ah growing list of diagnoses, it's your sign them at the bottom, relationship to patient, mother, relationship to patient, mother. And it just never seemed to fill the space.
00:27:57
Speaker
My relationship to Alden does not feel like I am just his mom because it has spilled into and over into being his caregiver and this advocate and his nurse and definitely his night nurse. And this kind of transformation of being I am Alden's dragon mom has been a place where I can take all that is slightly painful and ugly and uncomfortable about being Alden's mom and own it in a powerful way. And dragons, I think by nature, are a little fiery, a little fierce so and and incredibly protective of their young and a little bit lonely, right? Which is a part of this journey too. Do you feel like it's like a superhero suit that you put on when you look after Alden?
00:28:52
Speaker
Yes, yes. I used to quite a little, this sounds wild and a little crazy, but I used to actually like envision zipping into it before going into particularly painful situations, right? Like a meeting where I was going to have to advocate for Alden for something where it's like so clear that he needs this next size gate trainer and the steps that I need to take to get him that are just so frustrating and feel so unfair in our stealing our time and finances and I just zip into this suit and it allows me to have a thicker skin. And I also wear the suit when I go to some neurotypical pure birthday parties, right?
Parenting Challenges and Communication Methods
00:29:43
Speaker
These kind of seemingly innocuous events can trigger quite a bit of
00:29:51
Speaker
comparison, even if we work so hard not to go to that mental space, sometimes it's just impossible when you are looking at a peer.
00:30:03
Speaker
Yeah, I've heard that it's difficult and probably on um on both sides that you can't relate to maybe the small problems they're complaining about and they can't relate to your situation because you need to leave it to really understand. Oh yeah, I completely get that. I like the dragon mum suit. yeah I can picture moments where it can be very useful.
00:30:34
Speaker
I have had many friends who have backed away from sharing about their child having to have, you know, ear tubes placed or the relentless colds of the season and they just, you know, don't share those things. And then there's a greater distance between us. And so that there's this like really tricky dance between you know, continuing to lean into a friendship where you have such a different parenting experience and sharing, but not creating like a value difference. Cause I even find the like, it's, I think it's just acknowledging, Oh man, you're going through a lot too. And this has been hard for me. It's a both and.
00:31:30
Speaker
And I find the comparisons of like, oh, you're going through something much harder, ah equally frustrating. Cause it's, we all have our own value scales. Yeah. I want to switch to something slightly different going back to old and how do you communicate with him? How do you know what he needs, how he feels? I have heard another mom describe this as soul to soul communication, which I love. And it's a lot more than that. He originally had eye gaze only, which was extraordinary. So they the brain area that controls the muscles of his mouth and did not develop well. And so he really just has severely limited control
00:32:27
Speaker
of that. So he's able to make these kind of open mouth vowel sounds and he can create a variety of noises with that that over time become very clear. There's a pain noise, there's an excitement noise, there's just pure joy noise. There's a requesting noise and there's a, Hey mom, I requested this a couple of times now and I'm getting frustrated noise. He originally had just eye gaze, which was extraordinary. He could stare across the room and without any distraction, you could walk over and kind of pick things up and wave them around. And if he didn't follow that toy, then you knew he was going for something else.
00:33:14
Speaker
And then it developed into a point. He was able to isolate his pointer finger on his right hand. And so now he has this really strong point. And then we've brought his point to an iPad. And so now he's able to identify what he wants through a touch chat, which is a ah software on an iPad, which we call an AAC or his talker. And so he touches a button and then it speaks for him.
00:33:44
Speaker
and that's been an extraordinary process. and That must have been so liberating for old and new to be able to communicate like that. Did you see a change in him? It hugely decreases his frustration.
00:34:04
Speaker
I remember you know three years ago just crying one night and being like, I just wish he had a clear yes and no, and having no sense of if that was ever going to be possible for him.
00:34:21
Speaker
And now he has like almost limitless words through this talker. i'm So that's been an amazing, amazing transformation. That being said, he routinely refuses to use his talker and just throws it onto the ground. Cause he's like, mom, you know what I want. you Um, so it's, everything is, is with its imperfections. Um, but it's really helpful. Um, especially at these moments of high frustration to just say like, look, let's sit down together with your talker and, and try to figure out what you're trying to tell me.
00:35:05
Speaker
I have hope for the future that he'll be able to tell us more about kind of his inner world and not just what toy he wants to play with next or what i tap activity he wants to do this afternoon, but perhaps what his fears are or his frustrations or his emotions. Um, and so that, that will be something that we continue to kind of open and offer to him.
00:35:34
Speaker
i'm and And my hope is that we can we can break into that inner world. Yeah. Well, I wish that for you as well. Well, I feel like we could carry on talking. It's such a nice discussion. You've described a journey that that seems very deep and and very much still ongoing.
Alton's Joy and Personality
00:35:59
Speaker
I'm not finishing with the same question to all my guests.
00:36:04
Speaker
Tell me if you want to answer it for Alden or for yourself. What's your happy place, a place where you feel at peace? I think I'd like to answer for Alden.
00:36:22
Speaker
on our little porch. We have strung up all the world flags around the border of our porch. And and Alden is absolutely obsessed with flags, the patterns and colors and i'm you know the way they move in the breeze. he loves to be out there and squeals with joy surrounded by them and more recently we have gotten a second set of flags that are on teeny tiny little plastic flag bowls that he can hold and he recently
00:37:08
Speaker
and know would start picking up a given flag and then pointing with that flag to the corresponding matching flag around him in the room. And this has become very quickly a happy place and an awesome activity um for Alden to really show off how much is going on inside his brain.
00:37:35
Speaker
And it's it's one of these just awesome little insights into into what kind of tickles his fancy and and a playfulness. And i and yeah,
00:37:48
Speaker
it's ah it's been a really, really awesome space to be with him surrounded by all these colors blown in the breeze. Nice. Sounds very, very nice.
Conclusion and Reflections
00:38:01
Speaker
It was such a great discussion. I think there's two things that really will stay with me is that it's the first time I've been talking to a dragon mum.
00:38:16
Speaker
um But dragon mums can be fierce with the system when needed, but can also do soul to soul communication, which is the opposite of fierce in my mind. So that's been amazing. Thank you so much. And I really wish you a lovely onward journey with Alden.
00:38:41
Speaker
Thank you for for having this time and representing his story.