Growing Up With MED13L: Life at 14

Growing Up with MED13L: Life at 14

In this episode of Voices of MED13L, we continue our Growing Up with MED13L series with an honest look at the teenage years. Host Vanessa Dias is joined by Chelsea and Vern Klassen, who share what life looks like today for their 14-year-old daughter, Caitlynn.

They offer a candid glimpse into Caitlynn’s world—from her communication journey with AAC and experiences in school to friendships, family dynamics, and increasing independence. Chelsea and Vern also speak openly about the realities of raising a teen with complex needs, including balancing support with autonomy, navigating puberty, and thinking ahead to the future—while celebrating the joy, personality, and strengths that define who Caitlynn is.

For families earlier in their MED13L journey, this episode provides something invaluable: perspective on what the teenage years can look like, along with reassurance and hope for the road ahead.

💬 In this episode, we discuss:

•  Communication challenges and breakthroughs with AAC 
•  School supports and learning in a modified curriculum 
•  Social development, friendships, and sibling relationships 
•  Independence in daily living and life skills 
•  Navigating puberty and healthcare decisions 
•  Long-term planning and redefining expectations 

💛 A powerful conversation about growth, grief, resilience, and the beauty of meeting your child exactly where they are.

Transcript

SPEAKER_01 0:00

Welcome back to the Voices of Med13L, the official podcast of the Med13L Foundation. I'm your host, Vanessa Diaz, a mom to a child with Med13L, and a part of the community working to build understanding, connection, and hope for families around the world. Today we're continuing our series, Growing Up with Med13NL, with life at 14. This series is dedicated to exploring what life really looks like as our children grow. From early milestones to school years, teenage transitions, and beyond, we'll hear directly from parents and caregivers who know firsthand what it means to navigate the ups and downs of the daily life with Med13NL. Let's get started.

SPEAKER_02 0:47

Together.

SPEAKER_01 0:52

Today's episode is Growing Up with Med13L, Life at 14. And I'm joined by fellow Med13L parents Chelsea and Vern Clausen from Winnipeg, Canada. Chelsea and Vern have a beautiful daughter named Caitlin, whom I recently met at the family meetup in Boston in July. Now, your journey started when Caitlin was around four to five months, but you didn't receive your diagnosis until she was 12 in 2023. Today we're excited to focus on what life actually looks like for her and your family right now. Newly diagnosed families and families living with younger children often wonder what teenage years can look like. Your insight into Caitlin's life, including what skills and challenges she has academically, socially, and her level of independence, will be incredibly helpful for those thinking about the future. So, for those who haven't met Caitlin yet, can you describe what she's like today and what your day-to-day routines look like?

SPEAKER_02 1:42

Caitlin is very social. She is happy. She has always been just content. We used to call her a happy little lump. When she didn't have strength to do much else, she was still happy. She would just sit there and be happy. And that contentness has definitely been a strength for her because life is more challenging than it is for her peers. She's very social, she's very socially motivated. And again, that ends up being a good strength for her. She is in a traditional classroom at school. She's in grade eight, and she has supports through the day. She has her own educational assistant. We call them EAs here, and they help her work on a modified curriculum. She can do some site reading because of the motor planning. Communication is still a big barrier for her. And that does also impact her ability to print. So we're working on trying to teach her some reading skills and some writing skills. We're very blessed. We have a great school team. And the past two years, while she's been in junior high, she has made huge gains. And it's been a real encouragement for us to just see her blossom and gain new skills and do things that I didn't know she'd be able to do.

SPEAKER_01 3:00

So you mentioned she's working on communication like most of our kids are. And does she use an AC device?

SPEAKER_02 3:07

She does. She had a bit of a block with it. She had gotten her iPad with Prolico to go when she was about six, six and a half years old. The school was working with her on it. She was able to navigate through the boards and able to communicate. And then when COVID hit, they put her in a life skills room with other developmentally challenged kids, no one with similar struggles to her. And something happened and it became a block. And she would hide her iPad. She would lie. It died in at home. It broke. She would do anything she could to avoid using her AAC. And we actually just about a year ago watched the movie M Disney Plus out of my mind. And it's about a girl close in age to Caitlin with cerebral palsy who uses a talker in that movie. And I pointed it out to Caitlin. I'm like, look, she has a def, she uses a talker just like you. And initially she said, nope. And it was the same, not gonna do this, not gonna do this. But when I pulled it out the next day, she actually broke through and started using it. And so for the past year, we've been seeing her use it as a tool, which is what I always wanted. Because she's so socially motivated, she doesn't love using AC, she doesn't view it as her voice. Her peers, her siblings, her parents, we all just speak and it we don't have to think about it. For her, it's a challenge. And so she doesn't love using it, but she's starting to see that it can be a tool. And she can navigate and find what she needs on there very quickly. She just doesn't choose that as her primary mode of communication, but we're working on it.

SPEAKER_01 4:53

So, how is her communication then? Does she get frustrated with not being able to express herself freely, or do you feel like maybe she's answering questions very matter-of-fact rather than elaborating on what she would really want to say?

SPEAKER_00 5:06

I would say she's definitely at times it's very much like one-word answers, and sometimes it ends up just she ends up hyper-focusing on one phrase or one word, like for the longest time. Or we have a dog, her name is Bailey. And when she would want to go home or she was tired, she would say Bailey at home. And she would repeat that over and over again.

SPEAKER_01 5:30

And that's the way of communicating that she wants to be able to do it.

SPEAKER_00 5:36

Or mom's at home, or dad's at home. The words that she was familiar with, and she could say easily that were practiced. But yeah, definitely frustration. I know Chelsea shared with me one time a couple years ago. They're sitting on a bed beside each other, and Chelsea just said to Caitlin, I know this is hard for you to communicate and to talk. And Caitlin just broke down crying because she understands. The apraxia, because that's another cool more morbidity with her, is the apraxia speech. It's hard, it's really hard to navigate. So we're seeing gains, but sometimes it's two steps forward and three steps back. I just wanna I want to be able to hear her stories, and she she has so much to say and so few words to express what she has to say.

SPEAKER_01 6:30

Do you feel like when she's using her AAC device that she's using more descriptive words or perhaps saying like longer sentences, or is it still just like a one-to-two-word answer?

SPEAKER_02 6:42

A good example of how she can use the AAC is actually when we got back from Boston. After you travel a little bit, everything's everywhere, nobody knows where anything is, and she couldn't find her hairbrush, which normally she doesn't have any problems. She can find it, she's able to bring it to me, put it away, she always knows where it is. But in the chaos of packing and unpacking, she couldn't find it. And she was trying to find a way to tell me she needed her hairbrush, and she didn't have a word for it. So she grabbed her phone, which has the same board that her iPad does with her Prolico, and she was in the personal care folder and she was scanning and scanning. But because she's never needed to find brush on her AC and on a phone, it's such a small board. She couldn't figure out where it was. So then she went back into colors and hit pink and looked at me. And then I put it together. Oh, you were in personal care. What do you have? That's pink. Are you looking for your brush? And she just went, yes. So she's that was a huge breakthrough because she was able to use that's the kind of thing she's using it for right now with us. Is when she can't find something, she'll show us that she can find it on there, and she's proud of that.

unknown 7:55

Yeah.

SPEAKER_01 7:56

I feel like so many people say their children don't need the AAC device because they do have words, but having something like that accessible to children when they can't find the words is so powerful. It is. Yeah.

SPEAKER_02 8:09

And it showed her that there's a way for her to get that across to someone who doesn't understand her. She's missing a lot of the cons end consonants of her words. So with when you know the context, you can piece together what she's saying. If we're at the dinner table, you know, she's talking about something and we just asked, How was your day at school? It's easy to figure out what she's trying to say. But for someone who doesn't know her, they're not going to be able to understand her as well. So for her to have those tools to be able to give that context is going to be life-changing for her. And then as she learns how to read and write, to be able to type something or print something, just to have someone else be able to understand her when they don't know her and can't read her as well. That's what we want for her. We want her to have that independence. We want her to have that power because it is, it's a human right to be able to communicate no matter what it is. And we take it for granted when it's not a challenge. Absolutely.

SPEAKER_01 9:10

Yeah. And with that, I feel a lot of my own emotions being reflected in what you're saying. And for me, focusing on life skills for my daughter is so important. Would I like for her to be able to have a job and do all of the things that typical individuals do? Yes. But what I want for her is for her to have a voice and for her to be able to express herself, to be able to keep herself safe and express her wants and needs and be able to form relationships with friends and family members. It's so challenging.

SPEAKER_02 9:43

Unfortunately, the speech therapy services that are available in our province are consultative through the school. And she's lucky if she gets a speech session every six days. We run on a six-day cycle. And that's just the way that the system is set up here. We have access to private, but it's costly. And with our insurance that we have through work, because we have free healthcare, our insurance only covers $500. We each get about $500 a year, but that's about two, three, four sessions, and that's about it. So it's hard to do private when you know that it's such a small amount.

SPEAKER_00 10:25

And finding somebody that understands childhood apraxia of speech, because it's not something that is widely known or widely addressed up here. So there's one therapist or two therapists in our city that even have a concept of what apraxia really is.

SPEAKER_02 10:43

I'd say there's more than that, but if you look on the Apraxia Kids website, there's specialists listed in every city. There's none listed in Manitoba. So we don't have anyone who has taken the time, even if they are familiar with it, they haven't taken the time to advertise that and to put their name out there. So it ends up being word of mouth. It ends up being you're if you're lucky, you talk to someone and you find one that knows something about it and can help you. But it's definitely a challenge and it's something that has caused us to rethink where we lived several times. But the grass is always greener. We know there's struggles in every area. This is just one of the ones that we definitely struggle with here. We're fortunate that her school team is very willing to work with us. So the therapist she has right now is working on the same kind of plan that they're working with, teaching her to read and taking a whole communication approach. So she's trying to teach her AC, but also trying to work with her on some of the articulation and on some motor planning. And that's been a huge win for us because she didn't have that in her elementary school years.

SPEAKER_01 11:55

I've spoken to many different speech therapists, and a lot of them say the AAC device is also a powerful tool to help encourage reading and hearing the pronunciation of the words as the system reads it back to you. It really helps just reinforce language and reading. So it's a win-win for that. And I'm so glad that she's reconnected with the AC device. Yeah, us too.

SPEAKER_00 12:18

Uh-huh. For sure.

SPEAKER_01 12:21

At 14, she's in eighth grade, ninth grade.

SPEAKER_02 12:24

She's she's in eighth grade. She's a year behind. So she is currently in eighth grade. In her case, it's really hard to put a level on her. The communication struggles have made it that we really don't know what's going on in that little brain of hers. We know she is extremely observant. She will be the first person to tell you, to tell anyone. Oh, did you get a haircut? Do you have your you got your nails done? That was different than yesterday. Oh, you have a new shirt. Like she'll catch anything that's different. She's observant. She knows where she is. She knows how to find places. She knows if we take a different turn to get home that we're not supposed to go this way. But she doesn't always have the words to tell us what's in her head. So we don't have a formal, she's at a grade one level, she's at a grade two level, which is both good and bad. It's scary because you want, as a parent, to be able to put a number on it. You want to say, okay, she's supposed to be in eighth grade while she's in second grade. So we have this and this to do to get us back where we're at. And she can't really be measured that way for a lot of reasons. In some areas, she's still working on some preschool skills, but that's also with her how the Med 13L is affecting her. She also has motor planning issues in her hands. So she can't print very easily because of that. Because just as hard as it is for her to say a word that she doesn't know, it's also hard for her to learn how to write a letter. There's so much repetition and building that motor plan to even just do the letters of the alphabet. So how do you assess reading and writing skills when she can't tell you that word is dog? She can't write that word because she can't tell her hands how to make it.

SPEAKER_01 14:21

To your point, I do think that it's very much related to Med 13L and the motor planning because rare kids in general, they don't fall anywhere near the baseline of a survey. And a lot of the times, like you're mentioning Caitlin, she's very intelligent, but there's a lot of barriers for her to express her intelligence. And being observant is still a skill that I know a lot of adults are working on. And she's clearly very much on top of that. And recall, too, is very challenging. They may have a skill one day or even one moment, and then you revisit it perhaps 10, 15 minutes later, and they're unable to replicate it.

SPEAKER_02 15:01

Yeah, it's definitely a challenge. And we had to do a psychological assessment when we were going into junior high, and it was terrifying for me. I was fully expecting severe intellectual disability just because she doesn't test well. It's a lot of work for her. And she shuts down because everything is so hard. She'll just refuse. She doesn't see what the point is. Like, why does she care what you think of what she can do and not do? So she just won't do it. It's hard work. And we were fortunate again. We had a good team. They did the assessment in very small pieces when she needed it. And when we got the results, it was a moderate intellectual disability. And that was better than I expected. Not because I thought she wasn't intelligent, but just because I knew she wouldn't test well. And I knew that you can't put her skills on paper and expect to just have it be an IQ score because that's such a small piece of the puzzle. And it doesn't say anything about who she is.

SPEAKER_01 16:03

I totally agree with that. It doesn't reflect who you see as a day-to-day kid. So it sounds like she has a really full life, and you have many kids. Yes, we have five. Yeah, five. That's a lot. That's a lot. Can you tell the audience how she connects with her siblings and how she connects with her friends? How is she in the dynamic of a family of seven?

SPEAKER_02 16:28

She's the youngest. So we have four boys, and then we have her. And you would think that would mean she'd be a tomboy, but no, she has been the girliest girl from the moment any personality started coming out. She loves everything to be pretty and she's going through a bit of a dark teenager phase, liking to dress in black. Again, that's age appropriate, so I'm okay with that. But she loves to mess with her brothers, she loves to joke around with them, to tease them. Her brothers are phenomenal at helping care for her. They help take me, take her off the school bus while I'm at work. And my one son constantly tells her she stinks. So it's like you're stinky. And then she laughs and you stinky. Lala stinky. Like she will just poke at them and bug them just as hard as they can dish it out. She will dish it out back to them. She's very blessed to have great brothers and a good relationship with them. It's not without its struggles. She does require a lot of care. She also has impulse control issues. She has ADD, so she won't necessarily think anything of just smacking them, and they won't necessarily see it coming. So there's challenges, especially when it comes to impulse control. She struggles connecting with her peers, especially on the ones that are exactly her age level. For a long time, she was more comfortable. She's always been a caregiver. She loves little ones. She loves babies and toddlers and helping take care of them. She also gravitates to her older brother's peers. And so she tends to either go to the older kids or to the younger kids.

SPEAKER_01 18:11

That's so interesting. It's so similar to Elle. Elle is the youngest that we have two boys, but in it's the impulse control. And I don't know if Caitlin is like this, but Elle will only punch her brothers in the face. But it's a just a brother thing. So I don't know. It could be a typical sibling relationship, right?

SPEAKER_00 18:29

There's like sounds pretty typical to me. Yes, exactly.

SPEAKER_02 18:33

And I definitely see it that way. I think about the only challenge that she faces as opposed to neurotypical siblings, is that she doesn't necessarily understand when something's appropriate, when it's not. So what might be okay in one moment for her to be smacking them might not be okay another moment. And so I have to remind them sometimes. I'm like, you created, you guys gotta be easy on her. You created this dynamic with her. You have to be patient when she doesn't realize that now isn't a good time to sit there and punch you in the arm. But she doesn't just because she will punch her brothers, she's never punched a peer. It's a very typical sibling relationship. Because she has older brothers, she is a little bit more rough and tough with the boys at school. She has no problem rough housing with them, whereas some of the other girls are like, oh no, that's not okay. But again, she has four older brothers. So I look at that as being relatively normal. And the best analogy I was ever given for Caitlin, and it was to do with her speech. It was the first speech therapist that she saw. And the speech therapist actually described a proxia to me as it's like a piece of Swiss cheese. So she has holes that don't necessarily have rhyme or reason to them. So she has some sounds, and this is when she was two. She had some sounds that were age appropriate, and then she had sounds that were above her age, but she was missing those sounds she should have had to get to the other one she had. And there was no rhyme or reason. And to me, it was her entire development. Because there's some areas that I look at her and I'm like, this is normal. Caitlin has a crush on a boy. This is normal. He does not like this. Dad is not happy that there is a crush involved. But that is normal. A 14-year-old girl having a crush on a school pier that is a typical experience. And the fact that we were able to figure that out, that she had this crush makes me so happy because it's normal. But then there's other things that she has a hole and it doesn't always make sense.

unknown 20:38

Right.

SPEAKER_02 20:38

And it's just trying to figure out how to navigate those holes and create bridges when necessary. And other times just be willing to accept that okay, there's a hole there and it may or may not be filled, but it doesn't change who she is.

SPEAKER_01 20:53

Absolutely. It it definitely makes parenting challenging. I guess much more challenging than parenting a typical child. Can you give us an idea of what her level of independence is like? What does her day-to-day look like for her grooming and for her activities of daily living?

SPEAKER_02 21:17

She's fairly independent. She does need a lot of supervision because of impulse control. So we like to be on the same level of the house as her. So when she's upstairs in her room like a typical teenager, we try to make sure that we're up there just so that way she doesn't get distracted and go and do something she shouldn't see a shiny thing and get wanting to do that. But she dresses herself. She can do up zippers, she can do velcro, she can't tie her shoes, she can tie a knot, but she can't do a bow. She can't do buttons, but we just find clothing that works for her. And as long as I buy clothing that doesn't have a button, then she's able to dress and undress herself. When we tell her, go put your pajamas on. On, she puts her pajamas on. She knows when she's tired, even if we haven't told her to go put on her pajamas, will be on. And she will dress appropriately. She knows what certain clothing is appropriate for school and what clothing is appropriate for going to church. And she can pick her own outfits with good success. She with the motor planning, she struggles with the actual grooming. So she's mostly independent with going to the bathroom. She still struggles a little bit with bowel movements, which I think is because of the low muscle tone that she has. So we're still working with some challenges that way, but she can't clean herself very effectively. She needs supervision in the bath because of her seizures. So she can't be alone, but she's it. We try to give her opportunities to do as much as she can on her own. And she has short hair, so she can somewhat brush it. Like it's picking and choosing sometimes so that she can be a little bit more independent. I might really like a pair of jeans, but she struggles to get them on and off. Well, we're just not gonna buy those.

SPEAKER_00 23:12

She can walk and run and jump, but us being in Winnipeg, winters are a challenge with ice and unstable surfaces. She her balance is not the greatest, so she's definitely uncertain on ice, and she's taken a few spills because of that. And so we're extra cautious with taking her outside, especially when weather conditions are less than ideal. And that's a good half the year here.

unknown 23:38

Yeah.

SPEAKER_00 23:39

So that's definitely still something that's on my mind.

SPEAKER_01 23:42

Yeah. Since Caitlin is 14, would you mind sharing with the audience how you're managing puberty and the menstrual cycle, what you're doing for her to take care of herself, as well as if you've taken her to any specialists?

SPEAKER_02 23:56

So I had done a lot of thinking about this from pretty much the beginning, once we knew that she had some disabilities. And I decided to see an endocrinologist just to ask questions. I wanted to know what are my options? What do I do with puberty? What do I have to do? This is a scary thought to think about when you're looking at this innocent child, knowing that one day this innocent child is going to be a woman in a woman's body. So the endocrinologist and I talked about the different options. We talked about birth control. We talked about deprea. We talked about giving birth control pills, not doing anything. And I even asked, can we stop what can we do here to try and make this easier for her? And we decided to go on continuous birth control for her. I didn't want her to have to go through doctor's office visits and then getting a needle. And then with all the specialists, then she'll have that stress and trauma. So we chose, she already takes medications. So having a pill was very easy to add to that. We decided to do continuous so it stops her periods. So she does not get a period every month. They have said that is fine. There's no side effects to it. It's recommended that we give her a week to have a menstrual cycle about once a year, just so that the lining doesn't build up. The reason we went that route was because with her motor planning and her poor fine motor skills, I didn't want her to feel that it's appropriate for people to be helping her in the community with that. It's one thing for me to be helping her change a pad and make sure it's done right. It's another thing for people in her school. And she wants to be independent. And if we let her try and do it herself and she doesn't have a sanitary napkin properly put on, she could potentially have an embarrassing incident at school. And I didn't want that for her. So we chose to do the continuous birth control. It's working well. We had to go a couple of different pills to find the right one, but she's doing quite well with it. And we haven't had any side effects. Caitlin has struggled with UTIs because of she's she's had quite a few struggles with UTIs because she just doesn't have the same ability to keep herself clean. And you can only be with your child so many hours of the day. They go to school and you want them to be independent. So you're constantly having to pick and choose your battles and do what you can to help them be as clean as possible, but also not hover over them. And that's a real struggle. It's a struggle for every parent, whether it's thinking about what we're dealing with, different challenges, or even just a neurotypical kid. And at what point do you let them go to the store by themselves? At what point trying to balance that independence with the need to provide care is not the same for any child, no matter what their struggles are.

SPEAKER_01 26:59

Can you tell us about what your current goals are for Caitlin and what your long-term goals are for her?

SPEAKER_02 27:07

I think our current goals for her are always going to be, no matter what age she's at, communication is always our main goal. We want her to be able to communicate in the method she chooses in a way that makes her feel empowered to speak what's on her mind in any way that is. So we our goals right now are to increase communication, increase literacy, increase writing, and just to give her a good social experience. We want her to feel that she can make friends. We want her to feel confident in an environment when we're not able to be there. And we're fortunate to have some programs that she attends with other neurodivergent kids. There's youth programs that she goes to periodically, where she it's no parents allowed. It's Saturday night for teens, and they specifically kick the parents out. And she's enjoying that. So we want her to have as much independence as she can and the confidence to be able to be herself. That's really our main goal right now. Long term, we would love it if she could have a job, we would love it if she could be on her own, but we don't know if that's going to be realistic. So our plan is that we move into a home where we can have a granny suite for her. So she can be under our roof, under our eyes, and then live as independent of a life as she can, where she still has us to teach her and guide her and protect her. And then, as we can't care for her anymore, our boys, our older children, are willing to step up. My one son, he's number four in line, so he's the youngest, and in some ways, very much like the baby because Caitlin's just so different. He has said from a very young age that he wants to be her caregiver. His plan was to take her as soon as he finished school. And I laughed and said, No, you need to live your life. You need to have a life. You can't just take her. And he looked at me so serious and he said, No, mom, you need to have a life. You need to be able to live. And then I said, What about your wife? Doesn't she get a say in this? And he laughed and said, She better be okay with it or she won't be my wife. Because he was still pretty young at the time. And now he's 17 and he realizes he doesn't want to take her as soon as he's out of school. He does want a little bit of a gap there. But he has said he'll fight his brothers to the death for her. That's beautiful. And we're very fortunate to have that. So our long-term plan, if we can get that granny suite thing set up and have her as independent as possible, is to essentially give the house to him and to her so that we can still make it easier for him financially, because it's a commitment to care for someone with additional needs. It's not something as I'm sure everyone listening knows. It's not an easy life, and it does take a financial toll. And if we're not able to be the ones to care for her, we want to make it easy for the siblings to be able to take care of her, however, that's going to look. Our kids are lucky. They're learning skills that aren't taught in school. And I see adults that haven't been exposed to people with additional needs treating us and treating Caitlin different and not knowing what to say. And then I look at my boys and the love that they have for other people. And I think that they're fortunate that they've been able to learn these skills and it's given them an empathy that not everyone just has. And they tell me it's okay all the time when I apologize. I'm sorry, guys. I know I'm sorry. I feel like I'm not able to do this with you. I'm not able to do that with you. Our boys have been later to get their licenses because we're just exhausted. And so it's hard to take them driving. It's hard to do the things that people take for granted. And I apologize to them, and they're always telling me it's okay because they love their sister.

unknown 31:19

Yeah.

SPEAKER_02 31:19

They wouldn't change it. When we got our diagnosis, one of our children, when we explained to him that this was med 13L, it's a genetic condition. We knew that it was, we're not carriers, so they're safe. They don't have to worry about passing it on, which was very important for us to find out. And he asked, Is there a way to make it better? Can we make her better? And I looked at him and I said, It's in every cell of her body. If we could fix those cells, she wouldn't be her. This is who she is. And her struggles are part of what have made her who she is. Her strengths are coming because she has to overcome those struggles. We wouldn't change that. I want life to be easy for her. Of course, I want her to have all the best of everything. But if I could change the diagnosis and it would change who she is, I wouldn't do it. And they view her that through that same lens. And I think it's important for people to talk to the siblings, especially those that are older, because even though it's hard in the young years, and it's hard when they can't go to their friend's place because dad's working late and Caitlin goes to sleep early. So I can't drive you. I'm sorry. Yes, I say no a lot. But after the years go by and they look at it and they see how much they love her and she loves them, they see it as worth it too. And they would say that.

SPEAKER_01 32:58

So many families listening are just beginning their med 13 hour journey. What would you want them to know as they're just getting started? The grieving will not end, it evolves.

SPEAKER_02 33:10

And don't be afraid to grieve. It's okay to grieve. I have a friend who has a daughter who's the same age as Caitlin, six months younger. And I love this little girl. I love her. But there are days where I look at her and she's living the life I want for Caitlin. And I get a little jealous.

unknown 33:30

Yeah.

SPEAKER_02 33:31

And it's hard. But I have to remind myself it's okay to grieve. I need to be able to do that. I need to grieve that Caitlin's not going to live the life that when I found out I was pregnant that I thought she'd have. And that's okay. You need that time. And I need to remind myself it's okay. And allow myself to feel those things because otherwise you get bitter and you can't be the best parent you can for your child. For the longest time before we had a diagnosis, I described it as Caitlin had no ceiling and no floor. I didn't know if she was going to get to a certain stage of development, and then that would be it. She wouldn't go any further. And I didn't know what was the lowest level she could be at. I had no idea. So I just resigned myself that every stage she's at, it's okay if she doesn't gain any new skills. I'll just keep pushing for one more little bit further. And just let yourself feel. And that's what it's about. You have to accept that your family is going to look different, your parenting journey is going to look different. But how many parents of neurotypical children can say that it went the way that they imagined it would? No child, we don't know what they're going to be. We don't know what struggles they're going to have. I have four neurotypical kids. They are all so different. My oldest two, I've said many times, if you combine all their strengths, they would be the perfect child. They are so different that if you just took everything good about them, man, what a child that would be. But then what you'd be left with would drive anyone insane because they have all the opposite weaknesses. No child is the same, and no parenting journey is going to be what we imagined it's going to be.

SPEAKER_01 35:20

And we need to accept that. So thank you for sharing such an honest and hopeful glimpse into life with Meth 13L at 14. We'll absolutely have you back to share more about your journey with your diagnosis, as well as we'll talk about puberty and how you're managing Caitlin being a woman. But this conversation will mean so much to families wondering what the future might hold for their own children. We really appreciate you sharing your story. Thank you again for being a part of Growing Up with Meth 130. Thank you for chatting with us.