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Special Needs Kids with Guest Melissa Esplin {Episode 36}
89 Plays5 years ago
This week we're welcoming guest Melissa Esplin, talented calligrapher and blogger, to chat with us about special needs kids and her own family's experience raising a child with developmental delays. Melissa's no-nonsense and positive approach to her son will have you cheering for her and her family and maybe even give you the added strength you need to get through the rough patches of parenting your own special child.
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Transcript
Introduction to Hosts and Guest
00:00:06
Speaker
Hello and welcome to Outnumber the Podcast. I'm Bonnie. And I'm Audrey. And we're homeschooling moms to a combined total of 18 children. We know firsthand that motherhood is full of crazy chaos and overwhelming obligations, but it should also be full of love and laughter. Regardless of where you are on your journey, come join us as we work together to find joy in the chaos of motherhood.
00:00:31
Speaker
Hello, and welcome back to Outnumber the Podcast. We are on episode number 36, and today we have an awesome interview planned for you guys with Melissa Esplan. She is an amazing artist, a beautiful calligrapher, and just a very hilarious person, and one of my favorite blog friends who I've actually met in real life, so we are excited to have her today. So welcome, Melissa. Thanks for having me. I'm super excited to be here.
00:00:54
Speaker
I love your podcast by the way. Oh, thank you so much. Like so it just good stories, good advice. And I just feel so much better about like, oh, okay, I'm not alone. This is all just like kind of madness, right? Yeah. Yes, absolutely. We're all together.
Melissa's Family Stories
00:01:12
Speaker
And you know, we usually read a review, but we're just going to leave it at that. Thank you for your review. Perfect. We also do a funny mom moment. So do you have anything to share?
00:01:22
Speaker
Okay, I was trying to think of a good story about Felix, because we're gonna talk about Felix, but the best story that I have is about Penelope, my oldest. She's 11 now. We were headed up to Oregon to visit my husband's grandparents. His grandpa had been diagnosed with pancreatic cancer, so I was like, okay, we gotta say goodbye. This is our chance. What should have taken 14 hours
00:01:52
Speaker
ended up taking over 20 because the kids got some gut something. It was horrific. We were driving through the pasture lands of Idaho, seeing all these cows and thinking, wow, these cows smell so bad. No, it was Felix and Penelope.
00:02:16
Speaker
We were stopping constantly to just change the diapers and like that was a whole mess. Then a couple days later like they had kind of worked it out of their system. We were headed home and from Portland to Salt Lake there's this place. I don't even know what highway it's called but you're kind of going through a canyon and for about 15 to 20 minutes there are no shoulders. There are no exits. So you're just kind of stuck on the freeway. You just have to keep going.
00:02:45
Speaker
And Penelope just kind of groans from the back seat. She was probably like four or five at this point. She's like, mom, I'm going to be sick. I'm like, dang it. So I hand back this little bucket. I thought it was going to be super clever and like Pinterest mommy and have these buckets with toys and treats in them. No, they were for the
00:03:09
Speaker
puke in the poo. It was, yeah. So anyway, like I pass the bucket back to her. I'm like, just keep it in the bucket. Whatever you do, just keep it in the bucket. And I just, I kind of forgot because she was quiet. And like five minutes later, I hear, okay, I feel better now. I'm like, wait, you didn't puke. What? She passes back this little bucket with a perfectly formed turd.
00:03:38
Speaker
And so, yeah, it's potty time at our house. Anyway, but like she had loosened her seatbelt just enough to put this little bucket underneath her bum, pull down her pants and go to the bathroom, no spills. And after the drive up, we're like, wait, really? Like we just busted out laughing so hard. It was just like,
00:04:08
Speaker
Kid win, parent win, just so unexpected and hilarious. So that was... I would have been so dang proud of her. Seriously. I think that's one of the best things she's done. Oh, hilarious. Oh, she knew it needed to be done. She took care of it. Good girl. Yeah, she did. And that's kind of who she is. She's a really independent kid who just solves her problems. That's one of those stories that'll get passed on the rest of her life.
00:04:37
Speaker
Oh, wedding dinner. Talk about at the wedding dinner. Maybe after the eating. Yes, maybe. If the guests are lucky, we're so bad about like potty talk. Listening to your manners episode, I'm like, oh, I could do so much better. Oh, I think we all could. Potty talk. What is it with kids in potty talk anyway? It's just so great.
00:05:02
Speaker
I know, I know. Okay, so we want to start off today by having you tell us a little bit about your family. So what's it look like and yeah, let us in. So my husband's name is Chris. We've been married for 13 years and we met in college. He was buddies with my roommate and he was actually flirting with our other roommate. And then turns out he, we ended up dating.
00:05:31
Speaker
and getting married and within like seven months of us really dating. We have three kids. Penelope's 11, Felix is eight, and June is almost five. And I'm kind of freaking out. My little baby, my little mini me is growing up. So my oldest, she's kind of like our little spitfire. She is a duplicate of my sister.
00:06:00
Speaker
who was like very stubborn and strong-willed and just kind of fiery. And so I'm like, oh, okay. If I need to ask for advice, I'll just ask my sister. It's actually kind of perfect. Felix, he is just like, he's a hugger or he's a whiner. He's like not anything in between. He's like, can be the sweetest kid, but he's also just whined a ton. But he's adorable. He's in third grade.
00:06:30
Speaker
And he's got special needs. We'll talk about that a little bit later. But he just loves his superheroes. And then there's June, who, she's me. She's like a carbon copy of me. She loves to dance. She flits around the house. She sings these little songs. She draws. She crafts. She loves doing dress-ups. She's me. And for better or for worse.
00:07:01
Speaker
And yeah, that's kind of our family. My husband works a regular nine to five. He didn't use two, which we're all kind of lamenting that at the moment. And then I work from home, just trying to shift focus to be more of a present mom. Summer just really kind of makes that glaring, you know? Oh, yeah. It's like, okay, all right. Work is not important.
00:07:30
Speaker
kids are more important. I'm going to just sit down and shut my brain off for a few seconds and not feel the guilt or burden of what I'm leaving and done. So that's a little bit of our life. We're really loud. I'm sure if anybody walks past our house, they will just hear us yelling constantly. And it's like, it's
00:07:56
Speaker
It's not because we're always upset. It's just because we always yell. It sounds actually kind of fun. So. I don't know. I haven't been to a quiet house that has a lot of fun yet. Yeah. Maybe I'm wrong. Yeah. So we're loud. We like music and dance parties and eating lots of food and ice cream. And yeah, that's us. Okay. Yeah. Invite us over. Yeah. I'll take an ice cream dance party any day. Yeah. I'll make you food too.
00:08:27
Speaker
I'll make you some focaccia bread. We'll make your volume level triple. Yes, good, good, good. So we like to ask all of our interviewees, what is your biggest weakness as a mother?
00:08:44
Speaker
Um, all of them, you know, it's just, it's so easy to feel inadequate. And I try not to let those feelings of inadequacy overwhelm me, but truly, honestly speaking, I think my biggest weakness is just, I really have no chill with my kids. Like.
00:09:07
Speaker
Go put your socks away. Go put your socks away. Go put your socks away. Like I'm just constantly like, okay, you can't hear me. I've got to just like ramp things up. And I'm always just like talking loud and I have no chill. So patience and like calmly talking to my kids is something I would love to hone. But I definitely struggle with that a lot.
00:09:32
Speaker
Yeah, that is totally relatable. But then again, something I tell myself is like, that's the real me, right? They wouldn't, if I was very calm and quiet, they would probably have a heart attack because mom wasn't being mom. Right.
00:09:47
Speaker
Yeah, I had a funny, I had a funny experience like that recently. Actually, I channeled all my inner Zen and had a very, very calm confrontation with my kid where I told him what he was doing wasn't correct or whatever. And he looked at me like I had grown a second head. Like, you're not gonna yell? I'm like, Oh, look at this. He doesn't know what to do with mixing it up.
00:10:05
Speaker
Throwing you a curve ball there. That's right. That's right. You never know what's coming. Okay, so in contrast to that, we do like to follow it up with the question of what's your biggest strength? Because we all know we have something that we're good at.
00:10:19
Speaker
I feel like I'm kind of queen of the last minute. Like, I can really crush last minute stuff. You know, that's motherhood. You wake up, your kids say, I forgot something. And I go, okay. You forgot that you volunteered to bring cupcakes to school. This would have been nice last night or two days ago when I was actually at the grocery store, but you know what? We'll make it work.
00:10:46
Speaker
That's awesome. So I feel like as a mother, I'm queen of the make it work moment with those last minute things. Oh yeah. That is a huge skill and I would like you to come teach it to me. So I don't want to melt down. So I just, you know, get in gear fast because that happens all the time. Yeah. Well, you know, I kind of have had to become more that way where we live. We live literally on top of a mountain.
00:11:13
Speaker
And I say that, and I don't think most people understand when I say that, no, I really live literally on top of a mountain. And so it's like a 20 minute drive to the grocery store. So there's no like, I mean, eating out, it takes more effort to eat out than it does for me to make food.
00:11:37
Speaker
Yeah, yeah. So I feel like because we've lived in this house for seven years, we'll probably die in this house. Like you just kind of have to, okay, well, what can we substitute? Let's see. Can you substitute coconut oil for lard?
00:12:01
Speaker
Maybe? I don't know. See, I'm good at that anyway, just because I'm so darn lazy. I'm like, let's see, take three toddlers with a sort of ole note. We're going to figure it out. Not doing that. You can relate. Yeah, that's life. Okay, so you mentioned earlier that your middle child, Felix, has some special needs and I'm super excited to get into this with you.
Felix's Developmental Journey
00:12:25
Speaker
When I was in college, one of my minors was special education and I spent a lot of time working
00:12:31
Speaker
with kids in the special needs community. And so I'm super excited to find out more about Felix. Can you tell us more about him and his needs?
00:12:40
Speaker
First of all, I have to say that I've always liked you so much, but I feel like I like you even more now. My heart just like, oh, yes. Okay. One of my favorite jobs ever was I was a nanny for one summer for a little girl that had Angelman's syndrome. It's either chromosomal abnormality or missing the 15th chromosome.
00:13:10
Speaker
age, um, mental age was like 18 months was the max that anybody with Angelman syndrome ever reaches. So I was her nanny and mom's helper and it was like my favorite job ever. She was, she was the best. I mean, cause you get like a permit 18 month old. Yeah. Like it's, it's hard, but it comes with its benefits for sure. Yeah. Her, her name was Melissa.
00:13:40
Speaker
Anyway, back to Felix. Tell us about Felix. Felix. So he is eight years old. He's the size of a 10-year-old. But developmentally, he's about four. And we don't have a diagnosis, which is a bit of a sore spot at times. But basically, he has a global severe developmental delay
00:14:09
Speaker
And it just takes him so much longer to learn those milestones that you take for granted. Like, for example, kids naturally cover their face. It's a protection mechanism. So if you were to throw a ball at them, their hands are gonna naturally, as a reflex, come up to their face. His don't. So he kind of lacks basic instincts and basic reflexes. So we have to teach those to him
00:14:38
Speaker
Manually, which takes so much longer, but he's achieved every one of those milestones Thus far like he he hasn't necessarily plateaued which gives me a lot of encouragement that you know Like up until this point. It's our biggest concern has been toilet training. Yeah, and you know he's slowly getting there, but he's making progress month after month and
00:15:07
Speaker
changing a dirty eight-year-old diaper is really not fun. But I'm changing those diapers, a little less, a little less. It's just taking us a lot longer. So it's teaching me to just hold out hope and be a little bit more patient. Yeah. I'm not going to refer to Angelman syndrome through this whole episode, but
00:15:32
Speaker
The similarity is that that's like a life goal is to get them potty trained. And so, yeah, I know all about changing diapers on a 13 year old. Yeah, it's no joke. And, you know, you go out in public and I just, I hear some moms complain, oh, this restaurant didn't have diaper changing stations for my kid. And I think, well, that's terrible.
00:16:01
Speaker
No diaper changing station. You're not lifting your eight-year-old onto a diaper changing station. Yeah, he's 90 pounds now. That ain't happening. Yeah. So we just, you know, it sounds disgusting, but like sometimes it's the bathroom floor.
00:16:17
Speaker
because I'm not gonna change a stinky diaper in the middle of a restaurant floor. Or sometimes it's outside on the grass. Or it's winter, and you know what? The bus just came and he just did something in his pants before the bus came. You know, that happened to us a lot.
00:16:33
Speaker
two years ago. And it's just, it's 30 degrees outside and we're just changing his bum on the cement. Like you just kind of have to make it work. Yeah. You really are queen of last minute make it work, aren't you? Yeah. Yeah. I see why. Yeah. Um, yeah, you know what I was going to say, but, but what an exciting thing that you're still seeing progress, you know, cause you probably will get to a point where, where he plateaus and you'll have to, you know, wrap your mind around that. But the fact that there's any progress at all has, has to be pretty exciting.
00:17:03
Speaker
It's really exciting because, well, there's this thing that happens, you know, as you find out or as you're coming to grips and really understanding that your child has special needs, you have to, it's kind of a mourning process where you mourn the loss of your prior expectations. And I never thought that I was one of those moms who's like, you're gonna do this and you're gonna do that.
00:17:30
Speaker
But there are certain milestones that I have kind of had to let go of. And as Felix has grown and developed, I realize, yeah, those have been like, you know, I've let go of those milestones. Like, you know, perhaps getting married and having family of his own. But there's a possibility there. Like it's not, I don't have to completely bury it.
00:17:58
Speaker
But he may live on his own. He may have some adventures of his own just on his own terms. And so it's nice to have that window of opportunity still open a little bit.
00:18:15
Speaker
Yeah, that progress tells you that you just don't know what he'll be capable of. So just wait and see, right? Yeah. So I guess that kind of brings us back to those early days and years. To our next question is, when did you know that he was going to be different? Well, I think I knew when we had his first ultrasound when he was 20 weeks old.
00:18:37
Speaker
in utero. And the nurse, she paused when she did the ultrasound of the brain. She was measuring on the brain. And his ventricle was just slightly outside of the range of normal. And you're looking at an ultrasound screen. They're measuring in millimeters, and it's outside of the range of normal on an ultrasound screen, like how accurate it is.
00:19:06
Speaker
So, you know, I had my skepticism there, but I feel like that was kind of a foreshadowing of what was to come. And I just kind of buried it down and I didn't necessarily address it. And, you know, I buried it down with good reason because, you know, that triggered some alarms with my OBGYN and she wanted me to like go into genetic counseling. They wanted me to do an amniocytosis, which I am very much
00:19:34
Speaker
personally against an amniocentesis it doesn't work for me because that puts the baby at risk and You know and I had this conversation with the doctor. I said, okay, so what's the purpose of the amniocentesis and basically, they didn't come out right and say it but Like there was there was nothing to do about any sort of genetic disorder if he had a genetic disorder and
00:20:03
Speaker
besides terminate the pregnancy. And for me, that's never been an option. And I didn't like where the medical industry was kind of taking me. They were covering their butts. I totally understand it.
00:20:23
Speaker
But that was difficult. It was really difficult. And so I just kind of shoved everything down. I didn't want to address any of that emotionally for sure. And then he was a year old and he wasn't sitting up. He was rolling over and that was it. He didn't have any other milestones. And I took him into the pediatrician's office and he, you know, he has a large head.
00:20:49
Speaker
Um, but my husband also has an extremely large head and my side of the family have really big head. So it's not like, Oh my gosh, this is hydrocephaly, a hundred percent. He's just has a big head. So that, you know, at first it was like, Oh, he has such a big head. He's such a big kid. And at that year mark, the, the, uh, nurse practitioner,
00:21:13
Speaker
had no excuses. And she kind of had a freak out on me, which was extremely unprofessional in my opinion. And she's like, you need to get an MRI. You need to do all this imaging. And she just kind of shoved me back into that testing and screenings and genetic counseling and blah, blah, blah. And I'm like, nope. I don't know what this right now.
00:21:34
Speaker
So we found another professional who said, okay, let's get him into early intervention. If he's not making progress, then we'll slowly ramp things up from there. Clearly your own overwhelmed mother. Yes. Yeah. Right on the nose. So that's kind of the path that we've taken. We've done some testing. Everything's come back negative and
00:21:58
Speaker
Dealing with the medical industry, insurance and appointments and all that stuff, it's exhausting and I don't have any patience for it. I'm grateful that whatever it is that Felix has, has not affected his health. He's healthy as a horse. It's just affected his development.
00:22:28
Speaker
That's kind of where we are with him. Okay. So my question is, does a lack of like a conclusive diagnosis, does that bother you? Did it bother you? It bothers me. Yeah. And like my husband and I are very unified front, except when it comes to Felix's medical decisions. That's where we just disagree.
00:22:53
Speaker
We've had discussions about this time and time again, and ultimately what it boils down to is Felix does qualify for the services that he gets through the state because of his developmental delay, because it affects his development so much, that he qualifies for a large part of assistance, which is fabulous.
00:23:20
Speaker
A diagnosis could potentially harm our family because my husband, he was working freelance and he hopes to be working freelance again. So private insurance is a struggle if you have a diagnosis. So considering that he has no health ailments, like there are so many factors that have kind of come into play. And I think ultimately,
00:23:47
Speaker
I am now at peace with him not necessarily having a diagnosis because there are benefits and drawbacks to having that. Without him having a label, he's not put into any one box. So that kind of helps us push him further to do things, to read, to do math, to do these things where, you know, if he had a diagnosis, maybe they say, oh, he wouldn't ever, you know, do those things.
00:24:16
Speaker
So it's a double-edged sword. Yeah, I would imagine, but that's an interesting point that you bring up that if he were already classified as X, Y, or Z, they'd say, oh, those kids can't ever this, and might never allow him to get to that point, whereas now he's an open book. He could be whatever. So I guess that's the good side of it, but it's got to be frustrating. Yeah.
00:24:41
Speaker
You mentioned that you're at peace with it now, like you have acceptance, but tell us, like, what did your path to acceptance look like? And do you, like, do you still struggle even though you have acceptance? Do you still struggle with grief sometimes? For sure. I think the worst thing that I did when I really was cluing myself into the fact that Felix was atypical
00:25:07
Speaker
was play the what if game and you know what if you know i had two different due dates they were almost a month apart what if they had actually induced me to my original due date rather than my modified due date what if um
00:25:24
Speaker
What if I had eaten something differently? What if I, you know, and so then I, then I try to play the blame game and then I try to think about Felix, um, without his disabilities. And then I become ungrateful and then I have like, and there's nothing you do about the past. Like the past is the past, whether or not, you know, anyone is to blame. Um,
00:25:51
Speaker
Felix is Felix now. And one of the things that my husband said to me when I was really struggling, you know, I struggle with depression too, so that doesn't help. But when I was struggling with Felix and his diagnosis and feeling all the guilt in the world that I wasn't doing what I could for him, he said, well, is Felix upset? Does he hate his life? I said, no.
00:26:19
Speaker
He's probably one of the happiest kids you'll meet. Is this your problem or his problem? It's his problem and he's mad about it. No. So why are you kicking yourself about this? He's Felix. So that really helped me turn my focus around from what if to know what and working on, you know,
00:26:47
Speaker
the blessings that Felix has and that he provides our family as a whole. It took a long time to get there. Yeah. And it was painful. Yeah. That is so, so beautiful what your husband guided you through there. And you know, your energies are much better spent on the now what than the what ifs. Yeah.
00:27:09
Speaker
It's a hard place and it's difficult as mothers. I feel like we all play the What If game at one point or another and it's not healthy.
00:27:22
Speaker
Yeah, that's for sure. Okay, so circling back around, just like our first two questions that we asked you about motherhood, we want to phrase these, but in the context of having a special needs kid. So what sort of strengths and opportunities do you think that you've been given or discovered because you have a special kid like Felix? You know, we're in a digital era where people don't really leave their phones.
00:27:47
Speaker
And it's kind of hard to meet new people, to talk to people.
Family Dynamics and Challenges
00:27:52
Speaker
And Felix is like the ultimate icebreaker man. He'll just go into people and he'll say, he'll just say, Black Panther, my favorite. And he'll just like start a conversation and just, he know, he can break down walls. And he really has this ability to, well, he's just a tender soul. He's a cuddler.
00:28:17
Speaker
So, and sometimes when he gets really upset and frustrated and, um, up in a bother, which he has been a lot lately, 90% of the time what he needs is a hug. And that's not necessarily my instinct reaction. Um, but he, he just kinda knows how to calm people down. Um, so, and he's just like, he always puts a smile on people's faces.
00:28:45
Speaker
He just has the funniest things. And he like, we don't even have Fortnite the game, but apparently he knows Fortnite dances. And so he'll just like go out to people and be like, check on my Fortnite dance. It'll just like bust into this Fortnite dance. And he just...
00:29:08
Speaker
he has zero inhibitions and I think that that's something that I can aspire to because I get in my own little bubble and I become more of a hermit than I used to be and you know he really has forced our family out of bubbles like we go to the grocery store and we're getting out of the car and
00:29:33
Speaker
He just sees another family getting out of their car, so he just goes right up to him. Hi, my name's Felix. Okay, dude. See, I love that the strength that you chose is one of his strengths. It's not that you develop all these things because life is so hard, but rather that you're choosing to see these awesome things that he does better than you do. I think we can all do that with our kids, frankly. My kids have a ton to teach me, and I'm a slow learner.
00:30:04
Speaker
Right. Yeah. So tell us, what do you still struggle with in regards to Felix and his needs? Toilet training is still a struggle because he's not, he doesn't initiate going to the bathroom and he fights me. He loves saying no to me. He's very compliant to other, to strangers, which is terrifying.
00:30:30
Speaker
The other struggle that we have is he's a runner. And that is possibly the most terrifying thing that I've experienced as a mother. We call him the backyard bandit in the summertime, usually.
00:30:53
Speaker
He goes, he just like leaves the house and he goes through other people's backyards trying all their back doors or their garages and he'll walk into their houses, totally uninhibited. He walks into their houses, goes straight to the basement because apparently everyone has toys in the basement. So he goes into the basement and in search for toys and he finds them. He has a nose for them.
00:31:22
Speaker
And we never know where he's going to be. He has his little haunts. And because we live up on a mountain, trackers are difficult because we have bad cell signal. And so the day before his eighth birthday was probably the worst. It was February.
00:31:45
Speaker
and um cold and it was two o'clock in the afternoon and he was putting on his boots i said hold on a minute felix and then he darts he's the most uncoordinated kid but when he wants to run away he's a ninja it's just crazy so he bolts and like okay great let's go find felix we get like i'm i do my like regular loop around the the
00:32:13
Speaker
Neighborhood can't find him text ladies from church text a couple of like friends and neighbors and Like 20 minutes in I can't find him. It's two o'clock in the afternoon in the middle of winter and we have Five foot snowdrifts everywhere So he could just dart out from behind one of those snowdrifts and get killed by a car, you know Yeah
00:32:40
Speaker
So I worry about that. So I call the cops. I don't call the cops every time he runs away. Like if I called them every time, I'd be calling like a few times a week and they'd hate me. But so I call the cops, report missing persons. And I guess apparently they were doing a shift change. So the person who was supposed to relay the message there is a missing child didn't relay the message to
00:33:09
Speaker
the police. So I'm like, we're looking. Chris is home from work. He's looking. We're kind of going a little bit nuts. And I'm like, I haven't heard from the cops. It was 3.50 in the afternoon. And you know the sun sets at 4.20 in Utah in the winter.
00:33:29
Speaker
like we had 30 minutes to find it before it got dark and I, you know, and I'm like two hours in this is scary and so I call the cops again and like within five minutes they were at our house helping looking and they were
00:33:45
Speaker
They were arranging for search and rescue to bring their helicopters in when somebody called the cops and said, hey, I found this boy. He's having soda at my house. And like, why did it take you two hours to go? Right? Like, come on. How does this even happen? And of course, in Felix's point of view, he gets soda and a candy bar from these strangers.
00:34:13
Speaker
And then he gets a ride home in a cop car. Like, oh my gosh. Like, yes, the best day ever. And of course, it's like, it's his birthday the next day. So we have like cake and ice cream. He's like, this was my birthday present. How far away was he? He was about three fourths of a mile away. And yeah, so it's just like, that's the biggest struggle that I have is just him running away and
00:34:42
Speaker
He's terrible at crossing streets and looking both ways before he crosses. His very slow reaction times. And so I'm just like, dude. You're killing me, kid. Yeah. We live in a quiet neighborhood, thankfully. So it's not like people are going 60 miles an hour up and down our street.
00:35:07
Speaker
it concerns me when we have five foot snowdrifts. Yeah, seriously. I have to say that when you talk about him sneaking into people's houses, going to the basement, my husband has a hilarious story about his sister. His sister has Down syndrome and she was known for the same thing. She would go to people's houses that they knew and try to find a way in. And one time some friends of theirs weren't even home. She snuck in, was in the basement, I think playing a set of drums or something. And they came in and were like,
00:35:35
Speaker
What's that sound? Is there an intruder? She was like, yeah, eight or nine. And they're like, um, Katie, are you supposed to be here? Oh my word. It was like a pretty common thing. I guess they all know basements are where the fun stuff happens or something. Right? I honestly think that's
00:35:54
Speaker
That's the key to life, man. Find me where the toys are at. Okay, so moving on, we want to hear a little bit about your daughters and find out what their needs are or how they deal with being the kids that require less attention. That's always been one of my concerns if I have a special needs kids, is how do the other kids deal?
00:36:17
Speaker
June is Felix's best friend. They are, I mean, effectively, developmentally, they're twins right now. June is starting to, like, develop a little bit more than him, but they really are BFFs.
00:36:35
Speaker
So the biggest struggle is like it's Penelope and then it's the two kids. And sometimes I find I catch myself talking to Penelope. I'm like, oh, yeah, I've got to make I've got to get the kids to bed. Like you're one of the kids. You know, like because Penelope's 11 and these two are basically four. There's a seven year gap developmentally. So Penelope kind of gets
00:37:04
Speaker
She's kind of on her own a little bit. And I think that's a struggle that she deals with for sure. And we dealt with some academic struggles with her. And I think a lot of it really has stemmed from her need for attention and validation. And we've made some great progress. So what we've done for Penelope, we have
00:37:35
Speaker
Chris wakes her up at six o'clock in the morning, every morning, and works with her on homework or projects. It's projects in the summer or homework in the winter. So I don't do homework with her anymore, which has been a huge blessing because it was like two hours in the afternoon and she wants to be playing with friends or playing a game on the computer or any number of things, and we're stuck doing homework.
00:38:03
Speaker
So now she does it with Chris and it's just their time together. Nobody else comes in and she gets that one-on-one every day with Chris. Oh, that's awesome. And I feel like girls need that from their dads. Definitely, especially at this pre-teen, tween stage in their lives. So that's been a
00:38:28
Speaker
a big breakthrough for us that she's gotten the attention that she needs some of it. She needs more. And then in the summers, she goes to grandma camp. She does anywhere between two weeks and a month with my mother-in-law and they are buddies. My mother-in-law speaks Penelope fluently and she's taught her how to swim. She's taught her how to just
00:38:55
Speaker
like do kind of scary things like they go ziplining and hiking and like rafting down the river and doing these like adventurous things that I don't know that Penelope would want to do with me. She doesn't, she doesn't listen to me very well and not that she doesn't, I don't know. She just, that's how her personality has been since the day she was born. She doesn't listen to me.
00:39:22
Speaker
That I feel like really helps kind of fill her reservoir throughout the year, having that one-on-one time with her grandma, where she gets to just kind of do anything. Oh, that's really neat. So as June gets older though, I don't know what her needs are going to be specifically because she will eventually develop beyond where Felix will be. And I hope that they still maintain a closeness and a friendship that they've had
00:39:53
Speaker
Um, but you know, I can't tell the future. Yeah. And you wonder if that's going to change your family dynamic a little bit. Um, once Felix developmentally is the youngest kid, you know? Yeah. Um, so that, that should, that'll be an interesting thing to watch. And you're right. I think you're, I think that June will have totally different needs because she's not the oldest and yet she's not really the youngest or won't be eventually, you know, developmentally. So that's an interesting thing.
00:40:20
Speaker
Okay, so one question that I'm always curious about is what do you as a mom with a special needs kid wish that everyone around you knew about him? So when you go to the grocery store, strangers, or people at church that maybe don't know the scenario, what's the most frustrating part about people not knowing your kid?
Addressing Misconceptions and Sharing Resources
00:40:39
Speaker
I think not every kid is autistic.
00:40:46
Speaker
That's one thing that really, I don't know why it bothers me. I have friends with autistic kids. I love them. They're great. But for some reason, when somebody asks my child about his special needs, they automatically ask, does he have autism? And I think that's their way of connecting and trying to understand what Felix really is.
00:41:11
Speaker
what his prognosis is, how to engage with him. But I kind of resent that a little bit. I'm like, no, he doesn't have autism. He doesn't have a diagnosis, man. And I think maybe that goes back to my initial
00:41:30
Speaker
argument banter with my husband trying to figure out a diagnosis. But I think the other thing is don't be afraid of him. There are some people that really lean in to Felix and what he's doing and man those people, I will go to the ends of the earth for them.
00:41:51
Speaker
because if you engage in a positive way with my son, you have my heart, 100%. But there are some people that just, I don't know that they have experience with special needs people in general, so how to interact, what to talk about, you know, how do you even exchange niceties with him? And ultimately, I feel like, just give him a high five, man.
00:42:20
Speaker
And you'll just make his world Yeah, and I feel like every special needs kid has different needs right and different You know developmental level or what they're comfortable with physically and emotionally and everything else And so it always takes a little bit of time of interaction to know what a kid needs But yeah those people who go out of their way to make to try to figure it out. That's awesome Yeah, so here's a little bit different take on the same question What would you tell?
00:42:49
Speaker
moms, other moms, how to educate their kids about Felix or about other special needs kids in general. Because sometimes a kid's first reaction is a fear when they see another kid that's not behaving like they do.
00:43:09
Speaker
Yeah, I think questions are okay. I think that's really the biggest takeaway is that questions are okay. If you're not sure how to approach a kid, ask.
00:43:20
Speaker
Because some kids may need more personal boundaries than others. Some kids may be like physically quite fragile. Other kids may not necessarily be verbal. So it's really I think it's asking how to engage and just
00:43:41
Speaker
trying to get on their level. There's a book called When Charlie Met Emma. It was written by Amy Webb and illustrated by Marilee Lydiard. And it's a darling book about limb differences, but I feel like the same can be used for kids like Felix that have some kind of developmental disability, really any kind of disability.
00:44:11
Speaker
And just like reading that to your kids and having them understand that while they may not necessarily be exposed to kids with different abilities or special needs on the regular, that it's okay to engage with them. Yeah. Yeah. Okay. That's awesome. Thanks for sharing that.
00:44:34
Speaker
I feel kind of lucky that my grandmother's youngest brother had Down syndrome. He lived to be 53, which was quite old for Down syndrome.
00:44:58
Speaker
And I have lots of great memories of him. He passed away when I was 14 and I was able to really learn how to engage with him. And I remember feeling outside of my comfort zone with my great uncle and he was family and we'd see him often. But I feel like that was a really good learning experience for me as a child to engage with somebody who was different than me. He was blind eventually, developmentally he was about like,
00:45:28
Speaker
five or six. Um, but that was kind of a good little learning experience for me. Okay. So now we want to switch gears a little bit and have you tell us about your self care routine. So what do you do when everything's overwhelming and you feel under qualified because you have to be in the best version of you to be able to meet your kid's needs.
00:45:56
Speaker
I joke around that my love language is quality time alone. Is it every mother's? Yeah. One year for my birthday, Chris gave me five days at home alone.
00:46:23
Speaker
I mean it's like one thing to like have a weekend in a hotel room
00:46:31
Speaker
at home. Oh, it was amazing. So for me, a lot of it is just time to like, reset. And oftentimes that's alone. I bike a lot. I'm biking between five and six days a week for about an hour each day.
00:46:51
Speaker
And it's fun. We live in a neighborhood where I can do some serious road riding and not really encounter much traffic and then lots and lots and lots of mountain biking trails. So I get to do both just within just going out my front door. Yeah. So there's very little barrier to me getting outside and doing things.
00:47:21
Speaker
So Chris loves biking too. He's an avid biker. And him seeing me get into biking, he's like, oh, I'm going to do anything to support this habit of yours.
00:47:35
Speaker
I want to see you get out there. So, you know, having a supportive significant other makes a huge difference. And, you know, being able to be creative with our schedule so that I have time to get out almost daily, even just for like a walk for 15 minutes, really makes a huge difference in my mental state. I am one who tends to
00:48:04
Speaker
like go into negative self-talk loops. Depression just kind of does that to you. And biking and getting outside are those times when I get outside of that negative self-talk loop. I'm thinking about, oh, there's a rock, let's miss that. Oh, there's this berm, let's hit that. Or let's hit this jump or whatever. And so I'm thinking in a can-do positive, oh yes, I hit that attitude rather than
00:48:35
Speaker
You know, I can't. Yeah. That is so awesome that you helped figure it out. Yeah, exactly. How to, what you need for you and that you make sure to take care of that. That's so important.
00:48:47
Speaker
Yeah, and then in kind of related to that, I would ask where you go to feel validated. So, you know, if you need to talk over some of these issues, you know, do you have is it always your husband? Is it their support group or a therapist or something? What's your what's your favorite place to go and and talk it out? I have a couple of friends with kids with special needs. And that definitely helps put things into perspective, just because sometimes
00:49:15
Speaker
Our problems seem so big when they're really like, it's a little milestone or something that's really insignificant. So talking to other moms, not having a diagnosis can be a problem because I can't talk to other moms that have kids like Felix.
00:49:35
Speaker
Right, yeah. But I do know other moms, and you know, Felix does have some similar hangups to, like, autism and CDLS and all these, like, there, there are kind of these crossovers.
00:49:52
Speaker
where we can talk a lot and empathize with each other, which is really helpful. I'll talk to Chris when I'm just in over my head. I mean, Felix is 90 pounds. He's a lot to manhandle.
00:50:07
Speaker
You know? So I get tired and Chris is a really good supporter. I go to therapy, it's been a while since I've gone. I'm sure how they go. But therapy really has helped a lot. It's helped me put things into perspective 100% and then just getting outside of my home bubble and talking to other moms just
00:50:32
Speaker
just being social really helps get that validation and help me get into a better head space. Yeah. Well, and I would imagine with a kid with serious developmental delays, you still go through, you know, the vast majority of what you go through is often things that other moms can relate to just maybe not at age eight, right? Like we all know what it's like to lose a child and be terrified. We all know what it's like to deal with diapers and that sort of thing.
00:50:57
Speaker
So I feel like, yeah, sometimes we just need to talk to anybody who knows what it's like to have a kid that is pushing you past your limits. Yours might look a little bit differently, but that can be so valuable as part of the reason we talk about our funny mom moments on here. So everyone knows they're not the only one swimming in poop. Seriously. So we want to wrap up with asking you what's your biggest worry for Felix's future and also what's your biggest wish?
00:51:28
Speaker
So my wish is that his life strength, being a kid forever, remains a strength and not a weakness for him. That's one of my wishes for him.
00:51:41
Speaker
If he ends up being developmentally only eight years old for the rest of his life, I really hope he has as much fun as an eight year old for the rest of his life. He kind of has that special gift. He doesn't have to grow up. I don't want him to grow up if he doesn't developmentally grow up. So that is also my worry. I don't...
00:52:09
Speaker
You know, I feel like I believe in God and I feel like God has really greatly blessed our family financially so that we've been able to support our son. And I hope that he continues to bless us with that capacity to support our son and our daughters as well in the long term so that Felix can stay with us forever.
00:52:35
Speaker
Again, if that is developmentally where he ends up being.
Hopes for the Future and Advocacy Advice
00:52:41
Speaker
I hope that his sisters, if they have to take over care for Felix, that they will do so the way that my grandma took care of her brother.
00:52:56
Speaker
My great-grandmother had a Down syndrome kid in an era when you sent them to a facility and they were a ward of the state for the rest of their lives. They were no longer, people didn't visit their kids, they were just tossed aside. And that was against everything that my great-grandmother believed in. And she was a good advocate for her son.
00:53:25
Speaker
And in turn, her other children were great advocates for their brother. And I really hope that that's the case for my son, that he has the advocates that he needs in his life to take care of him when I'm not there. Yeah, I could definitely see that one of the biggest worries would be what happens when or if you can't care for him, right? Yeah.
00:53:52
Speaker
I see that in other families with special needs kids that the siblings develop a really, really special bond. And it's not the same as if their sibling didn't have special needs, but they do develop in the family that I was a nanny with, they develop a very protective and close and loving relationships.
00:54:12
Speaker
and that goes extended life. I'm sure you said that you see that with your grandma and I'm sure Bonnie you see that with your husband and his sibling and all that. There just develops this protective special caring. That's something positive that you can encourage in your kids as they grow up and I'm sure they'll continue that too. I hope so for sure. I worry because Penelope doesn't really like Felix very much right now.
00:54:41
Speaker
Yeah, but she's 11. Yeah, she is 11. It might just be 11 too. I shouldn't be so hard on her. She wouldn't necessarily like him if he was normal and she was 11 and he was eight. That is a very excellent point.
00:54:56
Speaker
Especially a pesky little brother, right? Yes. Yeah. Okay. So to wrap up, we just wanted to ask you if you have any special recommendations for other moms with special kids or for the general public that's hoping to understand special needs kids a little bit better. You mentioned the one book, When Charlyma Emma's, was that right? Yeah. So that book is great. So the author, Amy Webb, she's this little Miggie on Instagram and she does special needs spotlights, which are awesome.
00:55:25
Speaker
and also special books by special kids. It's on Instagram and then it's a channel on YouTube and oh my gosh, like my heart melts every time I see them post because it's, I think it's like this guy and his girlfriend that go around and interview special needs people or differently abled people.
00:55:53
Speaker
and it gives you insight to people who look very different or
00:55:57
Speaker
who have very different health issues and it's such a tender series and it's great. I love watching it with my kids so they can have that exposure with other people and understand that not everybody looks the same, not everyone talks the same. And we still struggle that even with a child like Felix, my two girls still struggle
00:56:25
Speaker
that if somebody doesn't look the same, they kind of point it out and it drives me nuts. So I feel like that's a really great resource for any parents. And then for moms with kids with special needs, if you're just kind of starting your journey, you just got to be easy on yourself.
00:56:50
Speaker
like you just can't be so hard on yourself because it is the hardest job to be an advocate, especially when you're trying to figure out a diagnosis and you're navigating the medical industry and doctors and nurses and you know, they are all there for to help their patients. I'm not like, you know,
00:57:16
Speaker
talking down about the medical industry, like there have been so many great medical advances, but it can be so overwhelming to be a mom and to be a medical advocate for your child. So just be easy on yourself and take a break if you can. Yeah, I think that's excellent.
00:57:38
Speaker
And can you tell our listeners where to find you on the internet? Yeah, you can find me. I'm most active on Instagram. I am at Melissa for one L two S's.
00:57:50
Speaker
Um, it's like Melissa and calligrapher made a baby. Yeah. Search Melissa S when that also works. Or calligraphy ORG. I teach calligraphy online. Um, and occasionally in person in Utah, if you happen to be in Utah. Yes. Look her up. Her stuff is beautiful. Thank you. Thanks so much for being here, Melissa. We've had a great time chatting with you. Thanks for having me. Bye.
00:58:20
Speaker
Thanks so much for tuning in. If you've enjoyed this episode, we'd be so grateful if you'd leave us a written review on iTunes. If you have any questions or ideas for future episodes, you can reach us at outnumberthepodcastatgmail.com and find us on Instagram at outnumberthepodcast. See you next week.