Smiles Included: Navigating through life with our rare disease superheroes
Smiles Included: Navigating through life with our rare disease superheroes
Laura Johansen: Triumphs, Challenges, and Hope in Raising a Rare Child
On this episode of Smiles Included, we sit with Laura Johansen, a resilient mother who shares her heartfelt experiences of raising her 21-year-old son, Duncan, who has only recently been diagnosed with Skraban-Deardorff. We dive into the early days marked by febrile seizures and delayed development and follow her journey through the complexities associated with this rare condition.
We touch upon Duncan's speech development, school and sports experiences, family dynamic and friendships. Laura provides great advice for what has worked for her and Duncan along the way. It's a unique perspective on the joys, challenges, and hopes of raising a child with special needs.
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.
This is Emily Beauclair and you're listening to the Smiles Included Podcast: Navigating Through Life with our Rare Disease Superheroes. On today's podcast, I had the pleasure of speaking with Laura Johansen, mom of two kids, including 21-year-old Duncan, who was just recently diagnosed with Skraban-Deardorff . Laura was extremely open and forthcoming with her entire story and Duncan's story. It's a perfect example of why I love doing this, because I got to ask so many questions and it's just speaking to a mom of an older child with Scraben Deerdorf is always a pleasure, just because I can pull information about what worked for them, how they got to where they currently are and, honestly, Duncan seems like such a lucky, lucky boy. So I hope that you all learn as much from this podcast as I did. Welcome to the podcast, Laura. Please tell me a little bit about yourself and your family.
Laura Johansen:So we live in Canada near a little town near Toronto, about an hour outside of Toronto. We are well, we're the four of us, pretty much five now. So there's myself, laura. I'm Laura Johansen. The rest of the family are McLaren's I just kept my maiden name. So there's, Bruce is my husband. We've been married for 25 years and we have two children. Emily is 24 years old and I said we almost have five in our family because she's engaged to a great fella whom she lives with in a town even further outside of Toronto, actually about two hours from here. And then we have Duncan, who just turned 21 in September, and that's who we're here to talk about today.
Emily Beauclair:So you just got this diagnosis recently.
Laura Johansen:Yeah, that's a bit of a story. So Duncan's 21. Early on when he started having some delays that we knew he was. He was a bit behind but we were like, oh, he's just a boy, he'll catch up, it'll be fine.
Laura Johansen:But at about a year old he started having febrile seizures. He had a lot of ear infections constantly and was kind of a miserable little shot actually. When he was born he grumbled a lot. He didn't eat great. He gained weight, but not great. I had to supplement with bottles on top of breastfeeding. He was kind of miserable. He complained a lot. We thought he was just kind of colicky. I always said basically if his eyes were open he was moaning and making grumble noise and he was not the happiest baby.
Laura Johansen:But so when he was 15 months old he had I don't know whether it was his second, probably his second bout of febrile seizures with another ear infection and I had just taken him to the doctor to get checked out. And then we were in the middle of a grocery store and he had this massive seizure which was really not very fun. But anyway he. We went to the hospital by ambulance and you know they did the usual check his blood work, yada yada, and sent us home. What we did note on that first or second seizure with the blood work was that his iron level was extremely low, very, very low, like it's supposed to be, I think 45 to over 200 and his was like 9. So that was one thing we noted. So then we got home you know, he was feeling a little bit better, went down to collect my car the next day because it was still at the grocery store and I got a. I didn't have a cell phone at that point but I had a pager and I got a page from the hospital saying that when I called back to say that he his blood work was not great, that he actually had a blood infection, he had a pneumococcal sepsis, so he had gotten this ear infection bug, the pneumococcus bacteria, into his blood. So they said don't break any laws, but get him back here now. So we did and that kind of started the ball rolling on. I mean it was.
Laura Johansen:I guess it was a blessing in disguise to some degree, because he ended up in a hospital. He ended up in two hospitals. The first hospital thought he was too sick for them, so they sent us to another hospital, which where it happened that I knew the doctor quite well I'm a neonatal nurse, so I had actually worked with this pediatrician before and while, you know, he was getting his IV antibiotics and she was taking care of him, she said you know, laura, he's really not doing what a 15 month old should do. And I said, oh, I know, but he'll catch up, he's just a boy. And she said, well, I'd like to investigate a little further. At which point I felt pretty dumb, having been a neonatal nurse and working with premature infants in developmental care for many years, and I hadn't really picked up on how severe it was. So we did some testing and they said again, I expected them to say, okay, here's what you need to do and he'll catch up. And they said, oh, he has some very significant delays. So I cried a lot and felt awful, but we did, we started the ball rolling at that point and we got him into early intervention, which is something that we have here in Canada.
Laura Johansen:And they also wanted to do some genetic testing at that point, which we did. They mostly were looking for fragile X syndrome, which, once we googled that and Dr Google was terrifying, which is why you should never use Dr Google, because we spent a month crying every day assuming that that's what he had and we also knew that it was. It's quite a degenerative syndrome and it gets much worse as you go on. It turned out he did not have that, but it took about a month to get that back. But the lovely pediatrician called us at like nine o'clock at night as soon as she got that result. But that was, you know, again a month, a month of waiting and being just horrified. So after that we saw a developmental pediatric neurologist and so for we've seen him.
Laura Johansen:Duncan has seen him for about 18 years, since he was two years on, two years old, and he still sees him now. And he encouraged us to do well. He asked if we wanted to do any further genetic testing. But Duncan had been through so much as an infant. He had just such a phobia of needles or anything. It was unbelievably difficult to be able to treat him or to do anything like that. So we said you know, if it's not going to change our management at this point, I'm not going to put him through that. We're going to deal with the symptoms as we go. You know all the whatever we needed to do to go along.
Laura Johansen:We said that if we, when we would do genetic testing, would be when Holly considered having children, to just to kind of see if there was a genetic component to it. So that's kind of where we started the ball. I think he probably would have been more like 16 years old and I finally told his pediatrician, the neurologist, that yes, we'll go ahead, put us down for genetic testing. So he, he referred us at that point and then COVID hit. So our wait list for the to see a genetic counselor was over three years. We so that's why we so we've kind of started the ball rolling when he was 16, but we didn't really see the genetic counselor until I guess he was probably 20 I'm trying to think of when we had the initial microarray done anyway. So then we went and we had the microarray done and again it was normal or they didn't find anything on the microarray. So then they offered us the further swab testing, which is where they found the Scrivengeard Dorf.
Emily Beauclair:Wow, so well. First, I find it very interesting that you are talking about. You know, it's like 17, 18 years ago going through this first round of genetic testing and early intervention in Canada, and it sounds exactly like my experience three years ago. So it nothing has changed that but like because we in the US have early intervention as well, like we have the birth to three program, but then just seeing the pediatric neurologist not really understanding what's going on, thinking you know he's gonna catch up, that's what everybody is saying, so but if you had gotten the full genetic testing then it wouldn't have mattered.
Laura Johansen:Yeah, screamwind Dude, it didn't exist.
Laura Johansen:They may have had a number for it, but they wouldn't have known what it meant, right? Yeah, we do finally have an answer, and I know one of your questions was you know how do we feel about that? I listened to your podcast with Andrew's mom and I think it's probably similar with most people. It was relief and a distresser, obviously, but mostly a relief for me. Me definitely, I think, for my husband, for Bruce as well, but for me I've spent 20, almost 21 years wondering what did I?
Laura Johansen:didn't I do? What should I have done? What did I miss? What did we miss? Did I eat something wrong? Did I dance too hard at that wedding? Did I? You know I had a midwife delivery? Did we not monitor close enough? Was there something that happened at birth? Was you know? Just all those questions, so I mean. So the nice thing for me was that that put that to rest and I can let myself be forgiven for that for a little bit.
Emily Beauclair:After 20 years.
Laura Johansen:Yeah, and also for Holly, holly and Austin when they have kids, just to know that it's. You know, they said right from the beginning they've always they don't have children yet, but they've always said, you know, if they got a Duncan they would be thrilled, they love him and both of them are committed to, you know, supporting him. But it's still, it's still nice to know that it's kind of a one-off.
Emily Beauclair:Yeah, exactly, but I guess going through maybe like it's the first 16 years before you tried again to get the genetic testing, but does Duncan have any other diagnosis? That was explaining the developmental delays.
Laura Johansen:It was really just global developmental delay and apraxia so sort of, and then again through it's sort of a new wish term and it certainly used a lot with premies, but it's developmental coordination disorder, dcd, which is basically apraxia. It's, you know, I think it's just a you know a term other than global developmental delay, but it's definitely, I mean, that's one of Duncan's big things, is coordination, is you know, putting together gross motor movements are more challenging for him.
Emily Beauclair:Yeah, and I definitely want to talk a lot about Duncan, because you know he talks, he speaks. I've seen the video of him and he looks like he's a fantastic human being, like very friendly he is.
Laura Johansen:You know what he is he is an incredibly oh just people love him, not just us, like, like everybody you know, even when, when, when he went to public school with, and Holly was Holly was older than him, but she was always, oh, your Duncan's brother or sister, your Duncan's sister, because everybody knew Duncan. Yeah, he's, he is. He is a great kid, I guess, I don't know. I'm assuming that Scraven Deardorf is probably a lot, a lot, like other disabilities, where there's a spectrum.
Emily Beauclair:Exactly, there is.
Laura Johansen:Yes, so that that can be. That's scary for parents of all. Yeah, it's just not knowing where you're going to land on that spectrum.
Emily Beauclair:Yeah, and I, and I know that's why a lot of the parents that when they saw you pop up in the Facebook group with you know a speaking child or speaking adult. Really, I guess I have to call him an adult now 21.
Laura Johansen:he's still not 21 as far as maturity goes, but he's, he is maturing. So, and I think that would be my biggest recommendation is just keep believing in them. They keep, they keep progressing. They do Like we we spent when Duncan was little. It was you could finish the sentence. Is he ever going to blink with everything, everything he ever did? Is he ever going to crawl? Is he ever going to walk? Is he ever going to talk? Is he ever going to mature? Is he ever? You know, just all of those things were, it was, it was a battle and it was a constant, a constant push Felt like we constantly pushed that kid.
Emily Beauclair:Before I go into, because I want to talk about a lot of the pushing and a lot of therapies you did, but I think it will be helpful to start with us understanding where he is now. So do you mind just walking us through like a typical day for Duncan?
Laura Johansen:So he, because he is 21,. He graduated high school last year, the, the program that he was in. It's called a community classroom in Canada and the kids are allowed to stay in that until they are 21. So so he was technically 20 when he graduated, but he couldn't restart the high school. So he was in this community classroom for seven years and with the same teacher, and we have been immensely blessed with the support that Duncan has gotten, both through his speech therapy, who was an incredible human, and his, his schooling. So he graduated and then so today he goes.
Laura Johansen:He goes three days a week to a day program and that is called Able. So he so like just for his what he's able to do, duncan, he has his own alarm clock which wakes him up. It's a Google alarm clock which we can also talk to from the kitchen and say hey, duncan, come on, get up. He gets up on his own pretty much. We kind of check on him. He showers himself, we make sure that he gets out of the shower. Sometimes he stands in there forever and we kind of prod him along. He definitely needs prodding. He's able to dress himself completely and sometimes he puts his shirts on backwards or inside out, but he doesn't care. He makes himself breakfast. It's always cereal. He makes himself cereal and then we give him eggs and toast because he needs more protein.
Laura Johansen:Before he goes he then he gets picked up by a car which is kind of like our public transit, but it's for it's called mobility on request. So it picks him up on Tuesday, wednesdays and Thursdays and takes him to his day program, which is about about 15, 20 minutes from here. He there. They do a combination of things. They do some continuing education at whatever level each you're at. There's only about 10 people in the program, I think. They go to the gym. They get a gym membership. He does a volunteer day every Tuesday where he and another man go to a 55 plus club and they kind of clean up after the people have been there. So Duncan generally wipes the tables down and stacks chairs and since he started there in September he is now able. The two boys are able to walk there on their own and the supervisor will follow along, like she'll go and meet them there in her car, but just to give them some more independence, and that didn't start right away. They kind of built up to that.
Laura Johansen:So he gets home from his day program and we talked about. We talked about what he did that day. In general, he's able to tell us what went on that day. He will always fall back to the comfort what's easiest for him to say, like how was your day? Oh, my day was great. Okay, that's good. What did you do? Well, we had lunch and we walked, and so he's able to describe not deeply, but he's able to describe what he did for his day. Yeah, and then he helps set the table for dinner, he cleans up after dinner, puts dishes in the dishwasher and helps make his lunch Pretty much a lot of things. Most things are supported, but he is able, like he'll come into the. He's just so helpful. He'll come into the kitchen and if there's dishes in the sink, he'll dry them and put them away without being asked.
Emily Beauclair:yeah, I know most people don't do that I know.
Laura Johansen:I wish my daughter had done that when she lived at home, but yeah, so he is able to do a fair bit of self-care and then tell us, yeah, somewhat about his day.
Emily Beauclair:Yeah, and I love hearing all of that. I'm feeling uncomfortable calling him a kid.
Laura Johansen:He goes to Special Olympics, he does a couple of sports with Special Olympics and some of those people are older than I am and we still call them all, kids, you know all the kids in the. You know the kids on your basketball team work.
Emily Beauclair:Yeah, I guess I wish someone would call me a kid. So there's that. But is he aware of the diagnosis and did that mean anything to him? Did he care? No, he didn't care.
Laura Johansen:We talked to him about it and again, it's fairly recent for us, so really just when, just in the last couple of weeks, I've sat down and so I tried to explain it to him. Like I said, well, you know, your friend Eric, and Eric has Down syndrome. And he says yes, and I said, and that's, that's something with his chromosomes, like with his, with his genes, in his body, with part of his body, that that makes him special like that. And I said, and you have something that makes you special like that, but you don't have Down syndrome, you have Skraban-Deardorff . And he was like, okay, like this is me.
Laura Johansen:He does know that things are harder for him. Certainly, sometimes it's funny because people, when he was young people used to say, oh, he must get so frustrated. And I was like you know what he really doesn't? I almost wish he would get more frustrated. So, but now he would just be like man, he was the funny. I don't know if this is true of other kids.
Laura Johansen:So it's an interesting part is that we had to take things away from dunk when he was younger, because he would just obsess with one thing, he would get on one thing and that would be the only thing he wanted to do. So when he was quite young, it was this, this garden, and you would sit in the middle of it and the things would twirl around, and he would just be at that for hours, if we let him. And then the next thing was busy beads. He was, you know the, the things where they move the beads around the wires, and that was he was. He was obsessed with them, like just obsessed so. And then he got on to dinosaurs and he would play with his dinosaurs, for and we almost had to we would take things away for a little while so that he would grapple onto something new, because he was just, he was so happy with things that were easy and familiar and he didn't have to work hard at it.
Emily Beauclair:Nobody gave him an autism diagnosis from all this stuff? Because we just got one for some of the things that you were saying.
Laura Johansen:No, we did not. I kept saying, are you sure? Because he had, he had a full psychological several of them, but full, full psychological evaluation. And yeah, they just kept saying, no, he's, he certainly, he's, he certainly has some traits of, of autism, I would say, but he's never been diagnosed with that, but he's. You know, he's totally fine with new situations you can throw him into, like social situations. He's, but he does. He definitely gets hooked on to certain things.
Laura Johansen:Like even if a friend is coming over if we tell him, oh, eric's gonna come over on Saturday to hang out with you, if we tell him that on Monday, he will just double check every day several times, so, like, so, eric's coming on Saturday, what time? What time is Eric coming? Is Eric and so Eric's coming Saturday, right? Like, or if we're going out for dinner, you go, so you, you're going to, you're going to stew and collines on Saturday, right, yeah, and I'm staying here. Yep, you're staying here, ok, and I'm, I'm, I can stay here and I'll stay here with the dogs, ok, yes, you can stay here. I think mostly he just doesn't want to come.
Emily Beauclair:Does he stay by himself?
Laura Johansen:Yes, he does.
Emily Beauclair:Wow, ok, you just gave a lot of families some hope for free time.
Laura Johansen:Yeah, so. So, yes, he he will. He's absolutely finest down his own. We have incredibly great neighbors that if, if he needed anything, he could go to almost any of them. He would not feed himself. While he would, he'd probably eat an entire box of dad's cookies or our protein bars. So we'll set it up for him. We'll either feed him before we go or he could. We'd have to phone him and remind him, but he could eat something up in the microwave.
Emily Beauclair:Yeah.
Laura Johansen:But I would. I would not have him use in the stove, be not by himself, because he would totally walk away and forget.
Emily Beauclair:I love hearing this and and you mentioned friends, because I know that's something that I always harp on and I know some other other parents were very worried about friendships, that's that's a huge.
Laura Johansen:That's a huge thing. That's a. That was a big challenge for sure, especially in his younger years. So we it was mostly us we we fostered friends, we, we invited friends over. He did have some normal, typical friends when he was younger, but you know, they outgrew him like so quickly, right, it was. It was kind of painful and hard to see, but but then went because he was in the community classroom. So there were, there were kids more like him and certainly more once he got to high school. He related to the kids in his class better.
Laura Johansen:Special Olympics was a huge thing for him. He was quite young when he started and again, a lot of the other participants athletes were older. But now he's older, he's, you know he's, he's not the little kid. He was only 12 or 13 and a lot of them were at least in their 20s, 30s, but so that was a big thing. That, again, covid was horrible in many ways, but it was also for Duncan. It kind of I don't know, I don't know, I don't know how it happened, but he and another friend, this Eric, who was in his high school class but graduated because he's older than Duncan's 24. So he graduated three years before and they were friendly when they were in school but they're now best friends and that was something that Duncan had to. He had to find his person.
Laura Johansen:We kept trying to find his person or his people, and it was. It would. Sometimes it would, they hang out but they wouldn't even really talk to each other. They would kind of be on their own. But so Eric is his main good friend but he's got a couple of other friends and we again we really promote boys evenings, like the boys get together.
Laura Johansen:So we're really lucky we have, we have a house with, like, we have a pool in the back, but then there's like a side house. We call it the swamp, because we don't know what to call it. So it's kind of like you know, in it's referring to mash actually not to Shrek, but either way, so it's. But it's just it's like outdoor furniture, a concrete floor. It's nothing fancy, but there's a TV in there and so that they can hang out in there. That's their space. They hang out in there, they do whatever they want. They have a beer or a cider, because they are, you know, men. So just to make it kind of, we keep an eye on it, but you know they walk. They walk down to the store. Duncan and his friend Eric will walk to the store themselves and they will buy chips and giant iced tea and they'll walk back and they'll just just be. We try to make it so that they're just dudes hanging out.
Emily Beauclair:I love hearing all this independence that you're throwing out there, but it is so nice to hear that he found his person. That's what I know. I've always been worried that he's going to outgrow. My son is going to outgrow his friends, but we haven't started Special Olympics. That's something that we've been looking into, because he's too young right now, so it's nice to hear that's a good way for them to be, friends there are. How old is he? He's five, he's almost six, yeah, okay, yeah, he's young, so yeah it is, it is young.
Laura Johansen:So we tried a bunch of different things. We tried we did put him in cubs again, which was it was good, and our neighbors were in it as well. Their, their kids are a little bit younger than Duncan, but but so he was in with people that he knew and that's, I guess, not just his special needs friends, but we have a really close community friendship group and all their kids love Duncan as well. They're. They're just so good. They're all younger than him but they're amazing with him as well. They're. They're very sweet and they, you know, they defended him on the bus, sometimes on the school bus. He did go on the regular school bus. So he went for a year with Holly and then she graduated and then he's been in with our neighbors. So he goes on. He would until this year and they went on the same bus and they were. They've looked out for him.
Emily Beauclair:You are making my day right now. I'm always worried about people looking out for my son when he's older and hearing everything you're saying.
Laura Johansen:It just warmed my heart, you know, like they. Just I knew that, I knew that he was being looked after Well, and the other, we did get him a cell phone and we didn't have cellular for him for a long time and we just got it in. Like before he started his final year of high school we got him cellular and thank God we did, because we have find my phone on it oh yeah, so I can track him. Oh my God, we almost lost him. He got on the wrong bus and so we're calling him and I'm like, ok, get off the bus right now. And Bruce had to go pick him up and I'm tracking him to make sure. I'm like, stay right there, do not move. But otherwise we wouldn't have known where he is, like we would have totally lost him.
Emily Beauclair:Can we talk a bit more about Duncan's speech and kind of how that developed him, like what? I guess when he was younger I'm sure you had him in speech therapy, but kind of what that was like and when did he start really getting words.
Laura Johansen:So it was definitely a slow, slow progression. When we didn't put him in Junior Kindergarten, we kept him in daycare because he really had no speech at four, like it was very, very minimal. We knew he understood, he had some receptive language because we started using sign language, like like cookie and more. You know, just basic ones that we could at least communicate somewhat. And yes, we started.
Laura Johansen:He started in speech therapy when he was two, just just, actually probably a bit before two, when we started realizing that he was really delayed and it was, yeah, it was just a slow progression. We went from sounds just literally working on you know, whether it was B, we would look on B for like a week. We would look on you know, then add in other sounds and then eventually we got to blends and then eventually we, you know, we got to phrases or you know two word or three word sentences, but again, it was. It was a long, slow progression and I think I mentioned in one of the one of the Facebook posts that the therapist that we use she was amazing, she just truly was incredible. But she used, where she touched his face, a lot Like we learned so much about how language works. I had no idea that so many sounds came from so many different places until you really analyze it. You know if she, if she wanted him to say a K, she would like touch his neck. You know like. Or an N, you would touch his nose. Or you know T, you would touch his teeth to say you know. So it was.
Laura Johansen:It was a slow progression but I can't remember exactly when he was more. I mean I would still not say he's conversational, he can, he can answer questions and he can. He'll tell you things. It's funny because his friend Eric and he FaceTime like all the time and I will listen to them talk and it it amazes us what comes out of his mouth, because he's relaxed and comfortable. He's not stressed Right and stress is a huge factor for him and I imagine most kids with scrubbing Deirdorff. But as soon as he's stressed he just it just shuts down and so I don't know again, as he matures he relaxes more. I don't know whether he's meant the medication we have him on probably helps to some degree. He's on in tune if and he we give him CBD oil.
Emily Beauclair:is this for anxiety?
Laura Johansen:We find sleep is a huge factor. If he hasn't slept well, then he's definitely more gappy and he's still gappy sometimes he likes to well, much less than he used to be, but he, you know, he'll kind of just stare at what people are doing and he's supposed to be involved, yeah, like oh, come on, go go. But definitely that is that is improved, like everything improves over time with him. It takes a lot of pushing and a lot of repetition, a lot of repetition, but he definitely does improve over time.
Emily Beauclair:Yeah, and we benefit now from having iPads that, like a lot of our kids are using a AAC and trying to learn to talk on iPad. My kids got my kids has like a hard, hard book that he turns the pages that we're trying to use. But did you have any sort of a AC device like that we we didn't have the AC, but we did.
Laura Johansen:WWe used a lot of like. We had a whiteboard that we had and again, we don't need it anymore. But at the time when, when he was going to school, we had he had a list of things that he had to do and he would literally check them off every day. So, you know, get dressed, hang up your towel, brush your teeth, you know, put on your deodorant, you know, bus time is 825. So we use that.
Laura Johansen:At school they used a lot of like Velcro pictures, you know, for scheduling the board. So similar I would say to what you know. What we did do, actually, which was probably one of the most I'm just looking at it right now In our kitchen we painted a huge blackboard. Oh yeah, so we put a blackboard right in the kitchen and he so a lot of the times when he was younger, he would want to say something and he couldn't come up with the word. But he could either spell it, he could write it down or he could at least come up with the first letter. So we'd be like, oh, what girl, what girl did you play with at school? And he'd say, hair, curly, curly hair.
Laura Johansen:And I'm like, oh, madison, and he's like, yes, madison, so he'd write it or he'd write an M would be one of the coolest things we didn't know when I think he was probably three or four I'm going to say three or four because it was definitely before language we had a magnetic fridge and we had one of those little letter things that you stuck on the fridge and you'd put the letters in and it would say B, b, b.
Laura Johansen:You know, it was like the leapfrog or whatever it was that thing Sorry, it's been such a long time I'm like I've forgotten all of these things and so he would put them in and he loved to sit and play with them and he put them in. And then we were sitting in another room one day and I don't know, we said something and I asked him to go get a letter and he could get every letter that we asked him to get. We had no idea that he knew his letters, but he knew it from that and he would go and we'd bring it in. And Bruce and I are sitting at the dining room table crying because he's bringing us all these letters.
Laura Johansen:We're like oh my God, he knows his letters. He knows them, but you don't know how much they're actually. We're just always surprised at his internal abilities for actually getting things but not being able to express it.
Emily Beauclair:I was actually just talking to somebody about that yesterday because I keep saying I'm constantly surprised by something else that Joe has done. I shouldn't be surprised anymore because I just have to stop underestimating him and just absolutely.
Laura Johansen:Oh so, even reading, when, like, he does read it, it's again. He's not going to be sitting down reading a novel on his own because he hates it, but we do, we're actually reading. Right now we're reading. And then it happened. I don't know if you know those books.
Laura Johansen:It's probably a little bit too old for Joe, but I like at this point. But it's like about it's young teenage boys, I think, or even maybe earlier, like maybe they were 10 to 12, but they get into all these. You know it's a group of friends and they get into all these little funny skirmishes and they're just short stories. But so we're reading that, but we like even a chapter is maybe six or seven pages long and we'll read, sometimes half of it, sometimes we'll read the whole thing, depending.
Laura Johansen:But it went from early on just reading a word, just just figuring out the sounds and sometimes not even understanding what those sounds were, what that word was. So but he's progressed and he can certainly read parts of chapters, but he still and when he was much younger it was a lot more he would he would exchange words for something he could say easier. So, for example, if, if he saw the word large, he still says huge, so he can see that word, knows what it means and can transfer that in his head straight away while reading to change it to something that's easier for him to say. So I mean, that takes a lot of ability. Yeah, right, yeah.
Emily Beauclair:Yeah, yeah, yeah, to see a word and say something else that is easier to say. That's impressive he did.
Laura Johansen:He did the same thing, like another one that we always remember is he said something about the fence, but he said gate. So you know, it was like he was reading and he's like in the fence and he points out at the, at the gate, and he's like gate, like oh no, it says fence, though it's not even the right letter, but yeah. Yeah, but I mean, but it's amazing that he's like OK, I know that word, can't say it. What can I say instead?
Emily Beauclair:That's great. I love to hear that that you know he's reading. What activities does Duncan like to do?
Laura Johansen:He loves to watch TV and he loves friends and Seinfeld, like all the funny ones. Big Bang Theory, we've watched Third Rock from the Sun, yeah, and again he. He watched Friends for probably three years nonstop, huh, yeah. When he was little it was Blue Planet. He loves all things oceanic, so he would watch the nature, like the David Attenborough, the Blue Planet series, until the point where he could tell me what was coming next, like he knows. You know, he'd be watching it and he'd be saying we've watched something. He'd be saying he'd say a bear. I'm like a bear, dude. We're in the middle of the ocean. What do you mean? A bear? Oh, look, there's a bear and he's eating the salmon.
Emily Beauclair:eah, does, does Duncan like music?
Laura Johansen:Oh, yes, does he does, because I hear this a lot and my son loves music. So from the time he before he could even like crawl or walk. He would sit on the ground if the TV was on and a commercial would come on with songs, he would just, he would walk, he would move and rock. He loves to dance. Oh, I should have posted a couple of videos of him dancing. He's quite the dancer.
Emily Beauclair:There's still time.
Laura Johansen:Oh yeah, honestly the man can, she can cut a rug, he is. He is quite a dancer. He puts on the moves. Yeah, we just took him for his birthday. People was his birthday present in September, but we just went in November to see the beaches, which she wouldn't have heard of because they're they're a local band, but they're beautiful young girls, so they. So we took him to a concert and he loved it.
Emily Beauclair:I love hearing that. Yeah, I think music is and dancing is something that a lot of our kids having common. Yeah, because my son is in his three years of Wiggles. Oh yeah, watching it and dancing.
Laura Johansen:Yeah.
Emily Beauclair:For I keep thinking he's going to get tired of it. No, no, nope. And yeah, he knows, he knows all the, all the dances, all the songs.
Laura Johansen:We can quote, like every line of finding Nemo
Emily Beauclair:I can't get Joe to sit down long enough to watch a movie. We need to get there.
Laura Johansen:He watched Finding Nemo, honestly on repeat, I swear for again. For like two or three years it was.
Emily Beauclair:Yeah, and I love that. And when, when I was first emailing you, when you wrote just keep swimming, that's the perfect analogy for our kids.
Laura Johansen:Well, you know what that was. Partly we showed it to him the first time because we're like, look he's special, Like he's a special fish.
Emily Beauclair:Exactly, exactly. I'm sure you've done, you know tons of therapies and things that work, things that didn't work. Can you say, like, if there's anything that you found really helpful or, conversely, if there's anything that you regret doing? T hat was a total waste of time?
Laura Johansen:The only thing that we didn't find terribly helpful was there's a speech program that is available through our school system, and it's not that it wouldn't have been helpful, but it was in blocks of like 10 weeks, so we would stop his private speech and then do the school speech, and it was just too, too disconnected, it would confuse him and we weren't on the same page, and so we ended up just stopping that and doing just our private one, because it was. It was so good. We did a bunch of things that I think, like most things were pretty like, you know, normal, typical, that you would, that you would do. We did early intervention, we did speech, we did physiotherapy, which we were able to get, and that was through through a hospital. So we went in and a physio would work with him.
Laura Johansen:We did a program and I don't know whether people have heard of it it's called the Aerosmith program, so Barbara, barbara Taylor, aerosmith or Barbara Aerosmith Taylor I can't remember her name, but she. It's based on neurodiversity, which is there's a book called the brain that changes itself, and she's one of the chapters in there. So the Aerosmith program is about building new and different pathways in the brain and I won't go into what it explains. But, like I won't go into all the things, you can actually go there, it's a school and you can go there. But A it was too far away and B it was way too expensive for us. So we just did a couple of programs and we would take him there one day a week and then we would do homework at home.
Laura Johansen:I won't say it didn't help, I think it probably did, but it was so time consuming that we were doing it to the deprivation of everything else. So it was just you had to spend so much time doing it, so he was at school and then we had to spend at least probably an hour or so doing this, these writing workshop things, that I think it's an amazing program. I'm not sure it was right for Dunker or right for him at that time, I don't know, and again, it was just so time consuming. Yeah, we do end sports. Really. We tried karate, which was painful. Yeah, it was painful.
Emily Beauclair:That's how I feel about soccer.
Laura Johansen:I could barely take him. Oh, my God, it was my Bruce. My husband has much more patience than I do and I would. I wanted to get a stick and poke him from the cheap seats because he would just sit and stare at everybody and I was like, just just try, so and that was. That was still, you know, again fairly early on. But a lot of the other sports were were great. And then I put him in swimming, which again was. We bought a lot of really nice gifts for teachers, because for his instructors because of crying, because that's what we had for yes.
Laura Johansen:Oh, but you know what? He's a great swimmer. Now we have a pool and like I don't even I don't need to watch him. I know he's not going to drown, he's like he can do. He can do. I get him to do a crawl, like you know we do, but it was. It was a really horrible experience because he just he would do everything you asked him to do. But if you put his face in and then he'd come up and well, and then he put his face in and then he'd come up and well again.
Emily Beauclair:Oh yeah, I think we just got over that stage. That Joe, I think, finally likes swimming.
Laura Johansen:Yeah, and Duncan loves swimming now Honestly loves it Riding a bike. We decided that that was going to be a mission. Yeah, I wouldn't do that again. I would not. You know, what he's not. He's not going to drown if he doesn't know how to ride a bike.
Laura Johansen:Yeah, it was it we have. We have a. We live in a very rural area, it's a very small town and we have one street that is literally just farmland and it's very flat. And thank goodness because we were running behind him on this bicycle and if anybody had heard they probably would have called children's aid on us because it was, it was not a great experience for anybody so he can ride a bike. He hates it and we don't make him do it anymore.
Emily Beauclair:Yeah, Okay. So so, switching topics girls Cause yeah, so so, cause I've always wondered if you know my son is going to grow up, and I say that, like girls, guys, I don't care.
Laura Johansen:I
Emily Beauclair:So I'm wondering your thoughts on that.
Laura Johansen:So dunks, I mean he's 21, but certainly he's more immature in his sexual development, I would say, than a normal 21 year old. We've asked him if he likes girls, boys, you know is he interested in a relationship? I definitely think he will. He definitely think he's interested in girls, cause we weren't sure he initially he was like no, no girls, kissing you gross.
Emily Beauclair:Which is normal.
Laura Johansen:Yeah, which is normal, yeah, but we found so his, his searches or his Facebook feeds on some things, and certainly his friend Eric who, who is just girl crazy, well, um has an influence on that.
Laura Johansen:But yeah so he's been looking certainly looking at not inappropriate um sites at all, like nothing, nothing you know pornographic, but just pretty girls in you know skimpy, where, um. But we still ask him if he'd like a girlfriend and he used to say no and now he's like I don't know, and so we're trying to encourage that and that is it. And again, I don't know how much to get into auto podcast, but you know we're trying to support him in a sexual development way and we're not exactly sure how to do that.
Laura Johansen:Do you that's tough? Buy him a magazine?
Emily Beauclair:No, I'm not sure yeah.
Laura Johansen:We've talked to him about the, the birds and the bees and about you know that how you might feel if you're with, if you were with somebody, but, um, yeah, that that I think it's still. He's still on the like I would say early as far as his development with that goes, but it's coming.
Emily Beauclair:I think that's one of the things that makes me sad when I think about Joe's future. It's like I hope that if he wants to have a relationship with somebody, that he can.
Laura Johansen:For sure no, and then yeah, finding again, finding somebody is hard enough for anybody Let alone. You know um but, just, I think, putting putting these kids, these people, these uh, in, um, just in environments where they have the opportunity to meet like minded individuals, so it gives them an opportunity to create relationships, whether it's friendships or love interests or, um, whatever it is. But, um, that would be a big recommendation, that, because I know it's helped Duncan a lot for sure.
Emily Beauclair:I guess that that kind of leads up to this other question. he sounds like he's doing really well and he is, you know, finishing this program that he was in for seven years, like, where do you see Duncan in the future? Whether it's a couple of years or even just like in 10 years out, you know what's your vision.
Laura Johansen:That, yeah, um, he, like I said, he never ceases to amaze us. So he did some um work placements when he was in his high school program, uh, so we would love for him to do something work related. I don't care if he gets paid. Uh, I mean it would be nice. But, um, but just for his own development and uh independence. Uh, the program he's in now, the ABLE program, is they do have um, like I said, he does the volunteering, which is great, but uh, they also do work placements. Uh, he hasn't gotten one yet.
Laura Johansen:I think COVID really set the program back as far as um doing community outreach Um, but I'm hoping that that that will happen sooner than later. I see him living with us um for as long as we are ABLE. That's another thing that we're really looking into now that he's you know we're in our fifties and he's in his early twenties, uh, so we've been um revamping all our you know, wills and everything to to set up, to make sure that he has um sufficient care, and we do that through our dog. She uh, she has has been always willing to take that on Um, but just making sure that it's set up so that it's easier for her through uh. They have the Hanson fund.
Laura Johansen:I don't know if you have those things Um. So the Hanson fund, I don't think it it even needs to be called that. It's just a fund that is for people with disabilities. That um is a protected fund which Holly would have complete Um uh care over and she could take out as much or as little as needed. But what it does do is uh does not affect their any other form of compensation that they get. So Duncan gets something in Canada that are in Ontario that we have which is called ODSP, which is the Ontario disability support plan, I think. So he he is given a disability a month or so Um that allows him to help with his living expenses and they get that once they turn 18. Um, and then we also have something uh called passport funding, and again, I don't know if that's strictly Canadian
Emily Beauclair:I don't know. But for everythining you are saying, I'm going to look up the U S version. So continue.
Laura Johansen:So ODSP is a monthly um benefit from the government, uh, and it counts as income. So he that that counts as his income. Uh, passport funding is uh for used for um, all kinds of things that can be used for. It's not just an open. They don't just give you a whack of cash and you can do whatever you want with it. You save receipts and you submit them. So we use it for things like um his day program, which it would. It doesn't cover his day program Completely for the year, but it certainly helps. Uh, you can use it for respite Um, and we're also allowed to pay Holly as a respite worker, uh, if we want to. Or another family member. Bruce and I cannot be respite workers, obviously, because he's we're his parents, but um, but we don't even have to worry about spending it all, because we spend it all every year and it's just on his day, just on his day program, uh, which is it doesn't even quite cover that, but it's really, really helpful yeah.
Emily Beauclair:And I love everything you're saying about Holly as well, that you know she is just so invested and involved and wants to help out.
Laura Johansen:Oh, they're, they're very, very close, they're, they're lovely and, uh, um, yeah, that that's something that makes my heart very happy. Um, both for both for their own relationships together, but also because I know that, um, we got back up for for Duncan have they always been really close?
Laura Johansen:Yeah, yeah, yeah, they always have really, and I don't know if it's because it's a female, like sister, brother, or if it's because she's older, um, or if it's just because that's who they are. But uh, yeah, they've always been very close. You have given tons of advice.
Emily Beauclair:So I don't know if there's anything left, but is there any other advice that we haven't spoken that you might have for the other parents out there young, younger kids or older kids?
Laura Johansen:Just keep pushing and believing in them Like it's. It's so exhausting and I know people said I read, you know, on the Facebook group that people are exhausted and tired of and it is. It's exhausting and there were times when I just, you know, you just can't do it for a day, and that's okay, forgive yourself for that day. You got lots of days.
Laura Johansen:Um, so, but yeah, just, and let them surprise. You Always assume we we always said we're going to set the bar higher than we think he can go, because, men, maybe he'll reach as high as he can.
Emily Beauclair:Oh, and thank you for reminding me the Facebook group. Um, one thing that has been on a lot of our minds is potty training. So how did that go for you?
Laura Johansen:I had no idea that that was even a thing. It wasn't early and it wasn't easy, but I'd say from when he was four he's been trained and yeah, never I've never had. I mean he was certainly. He was certainly urine trained earlier than poopy trained.
Emily Beauclair:Um so nothing special?
Laura Johansen:You just not real, just consistency and um, I don't know you know what. Honestly, when I get mad at him, he'll do almost anything to please me. He loves his mom, loves his mom. So I got mad at him a lot. I did. I got mad at him and I'd be like no, no. So even my husband says he says you can get him to do way more than I can and I said that's because you're nice to him.
Emily Beauclair:Yeah okay, maybe that's where I'm going wrong, right? No, no, I'm kidding.
Laura Johansen:I do expect a lot and I I'm very consistent, I don't let things go, I don't just go. Okay, forget it, we're not gonna. I just like I hanged at it until and you know so I don't know whether I think in some ways that is a regret, because I I think in when he was really early on, I think it made him feel bad about himself sometimes. Um, so now it's just way more. And and stress, when I stressed him out, he would, he couldn't do as much. So for me, my growth was stop trying to make him normal and accept that he's gonna be what he is gonna be and we're gonna make him the best that he can be. But he's not going to be a normal child, and that probably took me at least until he was 10 to 12 years old. It was. It was a hard one for me to swallow, also because I didn't know what it was. I really didn't know.
Emily Beauclair:I I kept thinking there's no reason for this so that's where I can't imagine what what you must have been going through, because, yeah, you're saying like there's no reason for this, because he didn't have this diagnosis, he's just delayed. And you're probably just thinking like, yeah, if I just keep pushing he'll do it.
Laura Johansen:Um, yeah and there was. You know, there was no. I mean, there were some changes on, like, he did have an MRI and there were some changes in in the white matter on his MRI, so we knew that there was something, but that could have again, was it then? That made me even question more is that was that damage from birth? Was that was that damage when he had his sepsis and he was so sick, um, like who knows right, but uh, at that point we didn't know, and now we do, even even knowing that.
Emily Beauclair:I know Joe has SKDEAS and, like I'll say, the potty training is a perfect example. I just get so frustrated and I'm just like I am not a patient person at all.
Laura Johansen:Um, me either.
Laura Johansen:Like I know, you can do this like I know yes, I'm probably, um, making it sound less difficult than it was. I think it was difficult, um, oh yeah, you know what it's been. It's been a long time and he's, he's come so far and I only see him for what he is now. I mean, I remember, I mean it's, and as they progress and as he does it's, it's so much easier for me to be positive when there's not as much, you know, when there's, I don't know when he's. He's older and he's more mature and he can, he understands. Now, you know, he, uh, he knows, if you know, if I'm frustrated or and he's he's more patient with trying things like the reading and he gets like even his sports. When he first started his sports, he plays floor hockey and basketball. He still sucks um, but it's amazing, some of these, some of the, the special athletes that he plays with, they're darn good athletes, right, um, so his he's, but he's way better than he was yeah, um, I don't sports are.
Emily Beauclair:I don't think sports are gonna be Joe's thing, but um music, we have him in dance class.
Laura Johansen:You just made me think, um, do you have you have ORFF? We did, or if it was fabulous. It's a music program, but um, so it uses, uses glockenspiels, but it also uses like, just drums and like, just so you can keep the beat and that could be all you do everything you've said today has just been so helpful.
Emily Beauclair:I feel like I've just been picking your brain for the past hour. After seeing Duncan on Facebook, I think all the parents just went completely insane and we're just so excited, so I can't wait to share your story with everybody.
Laura Johansen:I want to thank you so much for inviting me on and I hope it's helpful. But it's been thrilling for me because, like it's like, wow, my boy. People are encouraged by him and that's incredible. I love that thanks for listening.
Emily Beauclair:I hope you found today's discussion helpful in your rare journey. If there are any other topics you want me to discuss, questions you have for some guests, or if you want to be a guest in the show yourself, please reach out to me via the email included in the show description. Please also visit skdeas. org to learn more about Skraban-Deardorff and consider making a donation to help fund research to help our kids talk soon.
