Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures.
In this conversation, Candace and Shawn share these challenges and solutions they’ve discovered in the course of his 8 years of life. Candace shares her journey in finding Miller’s diagnosis at almost 2 years old whilst going through a divorce from his bio-dad, and Shawn’s experience in entering their lives and being totally and completely accepting of Miller and his differences.
We also talk about the prospect of curing Angelman syndrome, their choice to call Miller “disabled” instead of “special needs”, and the isolation that comes with having a child that has differences and challenges that few understand.
Mini-doc about Miller and family: https://www.youtube.com/watch?v=9iQLAHobfAU
Donate to FAST, and help fund a cure here: https://cureangelman.org/
Learn more about resources for children with Angelman here: https://www.angelman.org/
"And then as soon as you say chromosomes, they're like Oh, so like Down syndrome. And I'm like No."
Madeline Cheney 0:08
Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Now that we are into September, we have a new question of the month. This question of the month is a little more complex. It is: What is your favorite toy/tool/supply for (fill in the blank). This could be for dwarfism, hearing loss, vision loss, autism, low muscle tone, trachs, etc, etc, etc. So when you go to fill out the question, there will be a field that you can fill in to tell us what category your favorite tool, toy, or supply is for. And so I think it'll be really great for us to be able to share what we have learned as far as things that have been helpful. And this will be also a great thing for us to go to, I think, for birthday ideas and Christmas ideas, I'm really excited to see what you guys say. So head over to the website, therarelifepodcast.com both to answer September's question of the month and to look through the answers from last month. This is Episode 14: The story of Miller. This is our first ever episode with both parents in the interview, and I really loved it. It was great to have both perspectives and I'm hoping to be able to have that be more of the norm now so that this truly can be a podcast for both parents of children with rare conditions. Today we have Candace and Shawn talking about their son Miller. They talk about the challenges that come with having an eight year old with Angelman syndrome, like navigating non-verbalism, sleep issues, and seizures. They also talk about the prospect of a cure for Angelman syndrome, and what that would mean for them and Miller. Candace also shares about receiving Miller's diagnosis when he was almost two years old and while she was going through a divorce. Candace and Shawn have five children between them, Miller being the youngest. Shawn teaches English as a second language and he also has a background in film. He created a beautiful mini documentary about their life with Miller. The link to that is in the show notes. His perspective of being a very inclusive and loving stepfather to Miller is really great. Candace is a labor and delivery nurse in Seattle, Washington. And Candace is my cousin and we have enough age difference that I kind of admired her from afar until recently; we had a family reunion where we got to hike together and we had a great heart to heart about our rare sons. It was really fantastic and I got to know her better and so this interview was really a treat to be able to talk to her more. Candace is a lover of naps and helping others and Shawn as a lover of books and creating. Let's get on to our conversation.
Hi, Candace and Shawn, thank you so much for joining us today.
Thanks for having us!
Yeah, we're excited to be here!
Madeline Cheney 3:12
Awesome. I would love to start out with you telling a little bit about Miller. What is he like and who is he?
He is a bundle of energy and he is-- he literally never stops moving. So he is an explorer and he is a critical thinker. He loves to figure out how things work, and put things together, or on top of, or sometimes break.
Most the time break.
Right, right. Yeah. So he's just yeah, bundle of energy. He's just he's just moving and exploring and--
Extremely persistent. If he wants something or knows something is somewhere, he does not give up. Like most toddlers. I mean, that's kind of how-- I know he's older than the toddler stage, but really kind of his mindset and the way his motor skills are very much toddler-like and so I just liken him to any kind of three or four year old, like they're extremely persistent. If they know something is somewhere, they will do anything they can to get to it. I mean to the level of like, just trying to get into wherever it is or leaning on you manipulating like, Oh, I love you. And then slowly like reaching for your phone. Because he knows that's how the TV gets turned on. And then yeah, so it's it's all different levels. He's extremely smart. There's a lot of stuff going on in there that, that he can't communicate the way that we communicate, but he communicates it to us in his own way.
Yes. Very strongly communicates in his own way.
Madeline Cheney 4:46
That's so sweet. And so he's he's nonverbal. Right?
Yes. Right. Yeah.
Madeline Cheney 4:51
And we'll talk more about that in our special topic. That'll be really fun to delve into that a lot more.
Yes, for sure. It's--communication is, I think, our #1 challenge. Because you just yeah, I mean, I just-- it's such an integral part of everyone's existence to be able to communicate with those around them and the syndrome that he has (Angelman syndrome) has made it extremely difficult for him to communicate in a verbal way. And so we've had to adapt to a lot of nonverbal communication and find ways that work for him and for us that are sustainable for us. And yeah, that's been a big part of our journey and continues to be.
Madeline Cheney 5:37
Yeah. Can you explain a little bit more about Angelman syndrome, at least in his case, like Miller's Angelman syndrome?
Right. So Miller has a--so basically he has a mutated copy of the maternal 15th chromosome. So how that manifests itself is: Children with Angelman syndrome are very happy. That's one of the diagnostic criteria for them. Angelman syndrome used to be called Happy Puppet Syndrome, which no one in our community really likes anymore because it's kind of not the nicest of ways to describe it. But the reason they called it that is that children with Angelman syndrome are pretty much always happy, laughing, clapping, and they tend to walk with their hands up. And so they look like a happy little puppet.
Madeline Cheney 6:37
Yeah. And that's actually so Angelman is the name of the doctor that discovered the syndrome. And so we do like, in the community tend to call them our angels. But they can be little stinkers. So just because, you know--they're not angelic all the time. But it is kind of a cute, you know, it's a sweet way to think about our kids to call them angels and yeah, and it's not because they're angelic. It's because Dr. Angelman is who discovered the syndrome. And so Miller himself is quite a rare genetic mutation of Angelman. So Angelman itself is one in 20,000 live births that we know. And there are a myriad of ways that Angelman can happen. And 70% of kids are a deletion meaning a large chunk of the 15th chromosome is missing. And for Miller, he, like I said earlier his mutation and the particular type of mutation he has. There's about 10 kids in the entire country that have his type of mutation which is interesting. So there's a boy in California who has the exact same mutation as Miller, so that's kind of interesting. And he's a little bit older than Miller. And so that's, you know, kind of cool to see maybe where Miller will end up. But as we all know, genetics is only part of anyone's journey in life.
Madeline Cheney 8:16
Right, in who they are.
It's just kind of interesting because I mean, Angelman is very much a spectrum kind of syndrome, and Miller in the scheme of things would be moderate to higher functioning, and some kids with Angelman that have larger deletions are wheelchair bound and tube-fed and very severely impacted, whereas Miller, is more functional than a lot of Angelman kids, and so we feel really, really blessed with that, like, one of the issues with Angelman syndrome is that 90% of children that have Angelman end up having seizures and they can be very, very difficult to treat. And so a lot of families really struggle with that aspect of Angelman syndrome. And we've been very blessed that he, he does have seizures. He does have a type of seizures called atonic seizures. And they're also commonly known as drop seizures, and which he started having when he was three. And but luckily, we've been super blessed that Keppra is a common seizure medication that's worked really well for him with minimal side effects. And so his seizures are very well controlled. And so we're super grateful for that because a lot of kids with Angelman have very dangerous and life-threatening seizures that are really scary. So we're very, very grateful for Miller's seizure activity being able to be well controlled, and some children actually out grow them over time and we don't know exactly why that aspect of Angelman is what it is. But um, so we're hoping that someday he'll be off medications, but they work fine. And he doesn't have side effects so it doesn't really stress us out too much. We just see a neurologist once a year to make sure he's on the right dose. And otherwise, we're pretty good with that. Yeah, he's, I mean, he may be--gosh, it's been years since he's had one. He, yeah, once in a while if you get sick but--
Or extemely tired.
Right, yeah, so that's one thing about Angelman syndrome that is difficult is that our kids don't sleep like normal children. So it's not uncommon for kids with Angelman syndrome to sleep 2-3 hours in a 24 hour period. Sometimes they'll go days without sleeping, which is which is extremely, extremely difficult. And again, we don't know why. They just have this very excitable neurological system that leads to their hyperactivity and also makes it extremely difficult for them to sleep.
Madeline Cheney 11:11
What does that look like for you guys? Like on a daily basis? That sounds really difficult.
Yeah, it is. Uh, you know, we have done a lot of good...We have a really good setup, I guess I would say. Now with Miller, we've we've kind of streamlined everything. I think the things that we've learned through our journey is good sleep hygiene. So what that looks like is he goes to bed at the same time, he gets up at the same time, his sleep environment is very low stimuli. There is like a blanket, a pillow, and then he's also in an enclosed sleep space. So that that in and of itself is quite the journey because our insurance company literally told us that Miller's safety is not a medical need.
Madeline Cheney 12:06
Oh! Wow, that must have been fun!
Yeah, and that's part of special needs parenting is really fighting and advocating for your child. And it's, I think, one of the most frustrating aspects of being a special needs parent.
Well, and being a special needs parent of a syndrome that isn't as well known, like, if we said he had autism, then people are like, Oh. But, you know, and I think, I think insurances and stuff are probably a little more--because there's a larger group, there's been more advocates throughout the years for that particular word, whereas if you say Angelman, then they're like, K, like, you know, are you trying to trick us like, you know, it's just yeah, just how insurances work. But and in other people too, you know, you say He has Angelman and there's some people will be like so that's like autism or not autism, but that's like Down syndrome? You know, it's like, no, it's no, you know. And then as soon as you say chromosome they're like Oh, so like Down syndrome! And I'm like No.
People try. I mean, that's part of having a child that has a disability is I think people just try to make sense of your child. And when it's something they're unfamiliar with. I think it's just, it's easier for them to kind of want to categorize your child. So calling, you know, yeah. And I've learned actually-- I read this article, actually, about how the term special needs has been used a lot and that it's kind of almost getting this negative connotation. Oh, sure. Everyone's kid is special needs was kind of what the article was saying that some people are starting to do. So now I kind of switched my my verbiage to disabled because that's really--and I felt really conflicted about it initially, because I--the connotation of "my son has a disability" just seems it just is sad and it hurts my heart to say that I have a disabled child because I feel like it has a negative connotation. But I also think that people need to understand it's a disability. It's not a behavioral issue. It's not because we don't parent well. He has a genetic syndrome. And Miller's hard because he looks typical. People don't--I mean, when you look at our son, he looks like a vibrant, typical eight year old child, a little on the thin side because he's literally constantly moving so we can't get enough calories. But I mean, he's not visually identifiable as a disabled child. And so, we've had, through our journey as parents, we've had people be very, not compassionate to Miller's behavior when he touches them or grabs things,or puts things in his mouth. They, you know, can get a little--like checkers at the grocery store. So I tend not to take Miller to the grocery store partly because of my sanity, but especially currently.
I mean even in the cart, he can almost--if he leans over, he can almost reach both sides even if you put him in the middle of the aisleway. So he's getting so tall, so it just becomes a logistical problem. But with sleeping, like we have, like you said, we have hardly anything in his bed and he has an enclosed bed. So once we put him in his bed, and he has room to move around, but he can't get out and he doesn't get out to play. You know, it's not like a normal bed where you just like, Okay, and then he just lays there. He's not going to. So it's an enclosed safety bed. And you know, a lot of it is to try to get him into a situation that has very little to zero stimuli. And then doing this is just for his own safety and for our own sanity, so we can sleep and feel that he's safe and he's not in there, climbing on top of the bed or on the shelves or you know, opening the window, and who knows what? I mean, the older he gets and the stronger he gets, and bigger, it just becomes more-- a bigger and bigger and bigger concern. And so yeah, he's in an enclosed safety bed. And, you know, that's what works for us. We hear him in there making noise and stuff. We can see him on the security cams on what he's doing. But for the most part, he'll just wake up and mess around and jump around and then go back to sleep. And then he'll wake up later and go, so it's kind of an up and down all night with him and all morning, like, when I get up at 2:40 AM for work, and I'll hear him in there some days. And then by the time I'm done teaching at like, 6 or so in the morning, he might be asleep. And sometimes he's not. It's just, you know, kind of a hit and miss with him.
Yeah. And I mean, he kind of knows that, because we've been consistent with him about his sleep, that if he needs us he'll cry. He'll let us know that he needs something. But if it's not something urgent or like he needs a diaper change, then he's pretty good about going back to sleep. So we I think--
Yeah, he jumps around on his knees, you know, bounces on his bed.
Yeah, he plays with his blanket and his pillow.
Yeah, he plays with all that, the little bit we give him. But yeah, for the most part he's not.--But he also knows what time to get up. And so then he'll kind of start whining. You'll hear him in there whining like, hey, it's time to get up.
Right. And I mean, I think our consistency has been, has been integral and it's hard. It's hard. But that's like any child as you're raising them. You have to teach them boundaries. And you have to teach them that this is the time for this behavior. And this is the time for that behavior. And so I think--I'm proud of us as parents that we've we've done a good job with that and Miller responded well to guidance and we've been successful I feel like in getting him sleep because not only is sleep important for like his development and you know, our family's well being in general, but also because it can lower his seizure threshold if he doesn't. And that was actually how his first seizure happened is we had gone camping. And he was three, and we were still figuring out how best to get him sleep. And so he hadn't slept in three days.
Madeline Cheney 18:22
Oh my gosh.
And he just yeah, he just fell backwards. And, you know, and his gates unsteady on a good day. And so we weren't sure if it was just a fall, or what, and then we saw later of just, you know, a little bit later that it was in fact a seizure. And so, yeah. So that's why we're very, you know, meticulous about his sleep hygiene. And we've had to kind of be creative about our sleep environment for him because the enclosed safety sleep beds and that are medical grade are $18,000. And like I said, my insurance company, and actually, Medicaid does not feel that his sleep is or the sleep environment is a medical necessity which I've tried to argue for years but they... So anyway, so we converted a loft bed into an enclosed sleep space. And yeah, so that's been good and I learned that from other, you know, Angelman parents, and I think that's one thing that is so great about blogs like this and Facebook and one of the beautiful things about social media is that you can connect with people. When you have a child that has a syndrome or a mutation that nobody has heard of, you can still have community because it's very isolating, I think being a special needs parent because a lot of people just don't understand. It's like the logistics of like, we can't just go find a random babysitter. That's not a thing.
Madeline Cheney 20:11
Right. Yeah, yeah.
Well and even family takes a while. We've been together for like, seven years or so. But even then we don't see my family every every single day, but we see them a lot. But they're, I think they're finally slowly getting to the point that they understand. You can't just not watch him. Like here in our house, our house is set up for Miller and he knows where he can and can't go and what he should and shouldn't do.
Yeah. We call it "Miller-proofing."
Not that he won't sneak off and try to do something that he doesn't want to you know, like any kid but, you know, for the most part of course. But if we're somewhere else like, you know, you can't just not watch him. He's super fast, which is super stressful, and he's extremely smart. So he will, if he sees something he wants and knows he shouldn't have it, he will wait for the opportunity. It's not like he will immediately, like--he'll try to get and you say no, he will, he'll just kind of mingle around and wait for you not paying attention, and then he'll grab it and you know.
Madeline Cheney 20:40
Oh man. Little stinker!
Little bit, little bit.
And so it's, it's even our family trying to be like--you have to watch him. "Yeah. Okay." No, you don't understand, like, you have to watch him.
Yeah. And then we feel bad when he, you know, when he ruins, you know, or breaks something or, you know, scoops a dish onto the ground and the baked cookie--you know, whatever it might be, it can be kind of hard. And then also, I mean, we really can't go out very often. And so we really try to, like have our friends come over to our house, but they also have young kids and so a lot of times I think, you know, it's led to some social isolation. So yeah.
It's hard. Because it's like that even with friends and stuff they don't fully understand. And then if we don't, have him in an environment like our house, then one of us is with him all the time.
Like literally, right behind him.
And so, you know, you go visit family or whatever, you just kinda, you know, a lot of times, we'll switch off and on, or what have you, take turns, like one person is always playing with Miller and the other person's visiting, and then vice versa. And that's kind of--and I know, it probably makes friends feel kinda awkward friends and family feel awkward. Like, you know, one of us is ignoring them. But that's just not what it is.
Right. And I think they kind of feel like Well just let him you know-- if people aren't familiar with him--
They're like Well there's a toyroom. Just put him in there. And you can't do that.
Madeline Cheney 23:04
Like, we're not helicopter parents, we just have to take care of him.
Right, yeah. And we just have to keep him safe in there, in unfamiliar environments. And yeah, we were determined to not let it clip our wings too much. So we still do things, like every summer we go to a national park. And we have I think, kind of landed on that it's easier to get an Airbnb close by the parks and then go in but we have actually like tent-camped with him. And...
Madeline Cheney 22:45
So we make it work, and we make the most of our lives to give everyone, all of our children-- And I don't think we mentioned that we have four other children.
Madeline Cheney 23:15
Yes, we're a blended family with five total. And Miller is the baby as far as the birth order. So it actually, I mean, it kind of works, because he just kind of, you know, he's just maturing at a different rate of other kids. And him being the youngest, I think, actually, maybe is a blessing because the other kids are getting older and kind of understand and help and yeah, so that's, I mean, I think it's good, I think, it would be harder for me emotionally if he was the older child to see the younger children kind of surpassing him. And so I think in a way, it's a good thing that he's the youngest in the family because it just feels like he's just maturing in a different way, which--
Madeline Cheney 24:01
Kinda forever young.
Yeah, yeah. He'll always be our little, our little baby.
Madeline Cheney 24:07
So this is a nice little segue into the angelman foundation. I forgot the exact name of it, where they're looking for a cure.
Yes. So there's actually two--we're super blessed to have two very passionate organizations that are working to assist families with Angelman syndrome, and also one particular group is really actively supporting research to cure Angelman. So and because we know it's a genetic syndrome and we know it's one very specific malformation of the 15th chromosome, it's pretty amenable to research into a potential cure and in the 90s, they were actually able to cure it in a rat model.
Madeline Cheney 25:02
So yeah, which is super exciting. And so there is a lot of hope in the future for a cure for children like Miller. And one of the ways that there's a potential for a cure is to turn on the paternal copy of the gene which is undamaged. So um, there's both the Angelman Syndrome Foundation, and then Foundation for Angelman Syndrome Therapeutics is run by Paula Evans out of Chicago and she is this very passionate mama bear who is trying to find a cure. And so that has been their relentless focus is on curing. And of course, as a parent with a child, I would love for him someday to be able to have functional communication and a job, children, a family. As things stand right now, he'll need lifelong care. And that's scary as a parent to think that when I'm gone, my children will need to help take care of him and make sure that that he's well taken care of. You know, retirement planning, I have to, you know, we have to plan not just for ourselves, but also Miller's future. And so it's pretty daunting, it's daunting to think that I'll have-- that Miller will have these immense needs that will continue even when we're gone. So the idea of a cure is very tantalizing. And, and we're just hopeful for that someday.
Madeline Cheney 26:40
And they're doing research this year. And they just started a phase one trial for an actual cure. And so it's a pretty invasive thing that they--the medication would need to actually go in the cerebral spinal fluids. So the children would need to have spinal taps. And so that's a little, a little daunting for a parent whose child never sits still. But, but you know, it's phase one. So it's gonna be probably 8-12 years before we really have a good sense of whether it's going to be helpful.
Madeline Cheney 27:19
Interesting. I'll put a link to that in the show notes to those two foundations in case people are interested in donating and supporting that cause.
That would be wonderful. Yes.
Madeline Cheney 27:29
Yeah! And I was wondering, when you think of Miller being cured of Angelman syndrome, how do you feel? Like I'm sure you've thought about, you know, what that might be like. How do you feel like your relationship with him would evolve?
That's a really good question. I mean, I think, for me, I desperately want to know him. I think I know him. I think I know, you know, his nonverbal communication with me his physical touch, I would love to be able to know what his favorite food is. I mean, we just base it on does he eat the most of what's in front of him. But I would love to be like, Buddy do you like Alfredo pasta? We think that's what you like. But is that your favorite? Like, is there something else that you'd like better? You know, just to be able to talk to him about his frustrations to be able to talk to him about his dreams to be able to talk to him about what scares him and--
Well, and for him, it's kind of our relationship and more just his well being is for him to be able to have friends. Like, we think we know who his friends are at school. I mean, there's certain kids that like when you drop him off, and they get off the bus, he's excited to see him. But, you know, like, is that person he would pick as a friend because that's another part of it is that you just never know if they really have friends. You know what that's like, and then--
He doesn't go to birthday parties. He doesn't, you know,
I guess, you know, the most of what we're saying in relational wise comes down to communication. That's kind of what, that's what I'm most excited about, if there is a cure, but then he can actually better communicate with us and not just communicate like, I want that, I want this. Look, it's sunny outside or I want to ride the bike but communication like, you know, how was your day? It was fantastic. Like that other level of communication, not the not the very remedial level of communication. I want this I need this. I don't like this. I like that to the next level of No, I really like to go for bike rides, or I don't want to do that right now. Or, you know, I had a good day at school or--
Yeah, deeper connection than is what we long for.
You know, that's the part-- And I think the toughest part with it, and, you know, this is probably just what I always think about being a teacher. Is that, (and then a teacher of languages) is that he, I think he has all of the information inside. So if we, if we cure it and unlock that, there would still be a large learning curve of him getting the motor skills to make the sounds for us to understand the words, I think the vocabulary, the vocabulary is there because you can tell him to do something. He knows what you're talking about, like if you tell him to lay down, and he'll lay down. He recognizes, you know, he recognizes words, and he understands what you're saying, but for him to regurgitate it, that learning curve would be pretty steep. There's that hurdle that we would have to deal with when it is cured, but at least you would be on the track at that point, you know?
Madeline Cheney 30:45
Mm hmm. Um, also, I'd love to go back to to when you first recognized that something was different about Miller, so when you first got his diagnosis, and that whole journey.
So, Miller--I knew something was different with Miller as soon as he was born, and he came out and had this very atraumatic smooth delivery, everything went great. He just went skin to skin and screamed for four hours straight. He was completely inconsolable. And I, you know, being a labor and delivery nurse, I was worried that he, like broke a collarbone or like What's wrong, like something has to be really wrong, you know? And the pediatrician said, No, he's just kind of a fussy baby and you know what, it's okay. And then as an infant, he would cry on average, about 20 hours a day. I started keeping logs to really quantify for the doctor, because I think you know-- I have compassion for doctors because they hear that, it's such a common complaint that a lot of new parents come in saying my baby cries all the time. And I, you know, it was my third baby. I'm a labor and delivery nurse. And so I felt like I had--I knew babies. And so something was just fundamentally different with Miller and he was fussy in a way that was not normal. And so that lasted--he would only ever sleep 45 minutes at a time. I mean, I could set a timer to it. And then it got a little better when he was about two months old. But they were concerned because he wasn't gaining weight like a typical baby. And he had--he was difficult to feed. I had breastfed my other children and I'm also an international board certified lactation consultant. So I knew what was normal and what wasn't. He was very uncoordinated and really struggled to nurse. And so that was scary and they, you know, were telling me to give them a formula and I'm like, I'm not going to give him formula. It's not-- That's not the issue. And so, you know, they were kicking around failure to thrive diagnoses and things of that nature but we did, you know, finally figure out how to get him to transfer the milk and you know, we were able to kind of get things settled and he was doing okay, um, but I, from day one knew that something was different about Miller. And so and I kept, you know, telling our doctor, my concerns and he's like, Well, there-- I see what you're saying, but there's not enough here to test there's you know, it's just global delays and you know, he wasn't gaining weight and so, you know, it was just kind of like, let's just wait and see. And it's funny because again, just like people, I think, want to categorize your child as something like whether it's autistic or something that they can really like wrap their head around. I think there was a lot of, Oh, he's just your third baby. You hold them too much. You don't hold them enough. You don't do this, you should do that. Oh, well, I didn't talk till I was six, and I'm just fine. So there was a lot of people around me just kind of minimizing and trying to normalize what we were experiencing. And I found that very frustrating. I'll be honest, I found it very frustrating. And like people were being dismissive and in hindsight now, I understand that they were just-- it makes people uncomfortable when you have this kind of unknown with your child, and so they just want to make it okay by saying things like, Oh, well, that's normal. That's fine. And I just remember being very frustrated by that. So when Miller was finally diagnosed when he was 20 months old, kind of funny, he would have been diagnosed earlier, but there was an error in the lab they did the the most common test for Angelman syndrome, which was negative because he's not a deletion. He's a mutation of the chromosome. And so there was about a four month delay in diagnosis, and because of that-- so we had gone to the neurologist, and the neurologist was very confident that he had Angelman syndrome based on on his appearance, based on our complaints and concerns. And I remember that first appointment with a neurologist at Children's in Seattle, and she had rattled off all these things that she was going to test Miller for, and she just kind of as an aside, you know, And I will test for Angelman syndrome. And I remember Angelman sticking with me because everything else was like polyethylene glycol, like all these words that I was like blah, and then Angelman syndrome. And so I remember that first appointment, I came home afterwards and I was like, Oh, what was some of the stuff she said? Oh, yeah, that Angel... Angel...Angelman syndrome. And I remember going to the ASF, the Angelman Syndrome Foundation website, and just sobbing, looking because I knew, I knew that's what he had. I mean, I was looking at the children on the website, and they do-- I think that website at the time had more of the severely impacted children kind of in like the clips and such. And so that just was really gut-wrenching to me because at the time, you know, he was only I think 16 months old about when we first went to the neurologist and to think that that was my child's future was really, really hard. You know, it was--they were talking about how they're nonverbal and most don't walk and or you know, tube-fed and seizures, it was just very overwhelming. But there was just some visceral part of me is like that's what he has. And I remember just sobbing. Well, then the genetics came back three weeks later, and they told us he didn't have it, which was, I was like, Oh, yay, not knowing that they needed to run the second test and that he didn't have a deletion. He just yeah. And so it was later when we followed up with the genetics clinic that they ran the second test. And it was, it was really hard. They--so my husband at the time, Shawn's not the biological father of Miller, and Miller's father and I were going through a divorce and were separated and I remember getting a call from the medical assistant of the genetics clinic at five o'clock on a Friday night and being told in a very no nonsense way: So Miller does have Angelman syndrome, but the office is busy, we won't be able to get you in for three weeks. So the nearest date... And so I dropped the phone. I'm sobbing, and the MA was just dumbfounded as to why I was having such a hard time with this. And she was like, Are you okay? And I'm like, No, I'm not okay. At all. And so I didn't, you know-- I phoned the nurse practitioner after that point, and just kind of begged them to deliver that kind of news in a different way. And I don't know how many I mean, it. It sounds like that's kind of an unusual, that most of the time when you get these kind of diagnoses, it's in a clinic visit and with a knowledgeable professional, not like random office staff. But yeah, I'm not sure why our our delivery was less than ideal, and I think you know, once we were diagnosed it brought a lot of really strong emotions, I felt relief, to finally know that I'm not crazy, that it isn't something that he's just going to grow out of, that I was right all along so it was kind of... It was vindicating, there was a sense of peace that came with it and kind of acceptance. And then there was a tidal wave of fear and anxiety that came with it, knowing that he most likely was going to have seizures. I just had an extraordinarily hard time with anxiety and insomnia because I was constantly watching the baby monitor, I was very fearful that I was gonna miss him having a seizure. And so that was--those first few months after diagnosis were excruciating, but he also then had a trajectory that we were on. We had a path, more or less, we had specialists to see I suddenly had a community, which was huge, huge, huge, huge to have a community. And because it just it's just overwhelming and frightening and a lot of doctors haven't even heard of it. And so just you feel like kind of alone on this island bereft and you're trying to figure out how best to support your child. And so it's, it's that diagnosis was... Yeah, a very intense time in my life. So...
Madeline Cheney 40:40
Yeah! Shawn, what was it like when you first met Miller, and he became a part of your life?
I didn't see him. I mean, I knew that he was--we met at church. And I was working in the kids' rooms. So I was watching his brothers and you know would see him now and then every now and then I'd be in the younger group, and I would see him. That's how you know Candace and I met through that way. But I didn't-- I grew up with a lot of kids around me. I mean, I only have one sister. But my mom always had an in-home daycare, and she still does. And so I always had different kids around, infants, whether it be cousins or anything. I have a huge extended family. And I'm one of the oldest in that extended family. So kids have always been something that I've been around and I knew that he was different, like there was something there but it's never been anything that I've even really thought about. It's just like Miller is Miller and you just have to--he's just a different...he's just different. I mean, every kid is different and I just see him as a as another kid. That's just different. It's not--I don't know, it's never been an issue for me. Which is, which is interesting. We went to a gala which FAST has a huge gala where, you know, parents come every year in Chicago in December, and they have researchers are there and talking about what they've done throughout the year and everything and then they have this big fancy dinner and dancing and all this stuff. It's for parents, just the community to kind of come together. But I remember there, we weren't married yet. And could only been together maybe a year or two years. And I was there and uh, you know, obviously I'm very much in love with her and therefore very much in love with the kids and welcoming this family and everything and there's just this husband. He was a bio dad to one of them, and subsequently him and his wife had been divorced, but like, he-- the entire weekend and we were there for three, four days. Once he first met me and was early on, like every time he saw me, he was just absolutely dumbfounded that I would even choose--like why I wouldn't see that he had Angelman and just run the other way like he had no he couldn't wrap his head around it and he's the bio dad to one but he just, he really struggled with that. And I've never even thought about it.
It has been such a huge blessing for me. I mean, it's just...wow.
I mean just that all the diagnosis and everything that she was talking about, like, I wasn't there for that, you know, it was fairly I mean, he'd only been diagnosed for shortly.
I think we'd had maybe a year, I want to say cuz he was he was 20 months when we got diagnosed. So...
So a lot of the learning, as you know, we've kind of done simultaneously and of course of his growing and everything together. But, you know, just, I mean, back to your question, it's, I think--I don't have an exciting answer. The exciting answer is he's just another kid that I love, and he's just different and every kid is absolutely different. And I think, you know, obviously, I think a lot of that has to do with just the talents that God has given me in the way that I view children. And, you know, I mean, I am a teacher as well. So, I've taught third grade in seventh grade, and now I teach kids, internationally. But it's he's just, he's just another kid and just happens to have what he has. And you just have to deal with it in a completely different way. You can't get fixated on that kind of stuff. Otherwise, I think otherwise, I think you get bogged down. If you get too fixated on this thing that he has that makes him different than how is it different, you get too fixated on it. You're just spinning your wheels and getting yourself frustrated. You just can't do that.
Madeline Cheney 44:33
Yeah, I love that. Well, I'd love to wrap up with kind of your overall--your love for Miller, from each of you how much... I guess that's kind of what you just shared too, Shawn. But just yeah, tell me more about how much you love Miller.
Um, so, yeah, there is!
We were talking about the, you know, the disorder and everything. But, you know, they, they are a unique person. And they have their own personality for sure.
Yeah, I mean, I think if I could just like some Miller up in a phrase or a word, I would just say joy. And he just is like this little ball of sunshine and joy and everybody that he meets, he just, if they will give him the space and the, you know, patience to interact with him. He just loves people and he loves interacting with people and he loves sharing things with you and showing things to you. And he's just this happy little ray of sunshine and everyone's life that he meets and all his therapists and his teachers just love interacting with him because you--He is just a joy to work with he, you know, don't get me wrong, it's difficult because he, you know, can be abstinent and, you know, he does not like to sit still. So when we're trying to do fine motor work or working on communication, he can get a little frustrated or restless. But I mean, he's just joy. He's just joy personified. He's just happy and silly and funny, and...
And he has a very twisted sense of humor.
He does! It's funny, he loves villains. He thinks villains in movies are hilarious.
Madeline Cheney 46:38
Oh my gosh, that's so funny.
Yeah, if anyone cries in a movie, he thinks it's hilarious, he'll laugh!
Yeah. The more sad than music--I mean, all those cues that filmmakers give you, you know, there's an emotion you should be feeling you should be feeling down or sad. He's over there. Just laughing.
Yeah. So which is kind of kind of ironic, but he just, yeah, he just loves everybody and he wants to have physical contact with you and he wants to hug you and yeah, sometimes lick you. Give kisses...
Yeah, he's very social. And you can see, like his teachers and therapists and, and friends and family. Like when he recognizes them, you can see his face light up, but they also, their face lights up too, right, and even on zoom calls, because we're not going to school right now. We have zoom calls every week with his teacher and his classmates and stuff. And you can see he gets excited. They get excited to see him.
He's a very social, very loving little guy.
Madeline Cheney 47:40
I love that. Well, thank you so much for sharing about Miller and your journey.
Of course! Our pleasure.
Madeline Cheney 47:48
For photos of Miller and his family, as well as the mini doc about him, head to therarelifepodcast.com. Please share this podcast with anyone you know, that could benefit from it. Let's spread the love. Don't miss Episode 15 as Candace and Shawn share things that they've learned about communicating with their nonverbal child. See you then!
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