0:04

Well, thank you for listening to Take Your Medicine podcast. I'm Philip Cowley. I'm a pharmacist of 22 years, and I actually think people need to figure out some of these medical journeys on their own. So this podcast, Take Your Medicine, is dedicated to medical journeys, where people figure out how to utilize the medical system the way it is, along with other things to make their life better. And today, I have the prettiest guest in all the world, yes, my wife finally decided she would do a podcast today about our oldest son Jonas.

Andrea: 0:35

I'm about ready to change my mind, but let's do it.

Phil: 0:38

So Jonas has some special needs and mostly what we see with Jonas is a lot of speech delay, a lot of processing issues,

Andrea: 0:48

impulse control,

Phil: 0:49

oh, impulse control, that child.

Andrea: 0:51

Luckily, not in a terribly negative way, but just

Phil: 0:55

remember when he scratched our car with that fake diamond thingy.

Andrea: 0:58

Yeah, he drew hieroglyphics in it.

Phil: 1:00

Yeah, he was way, way big into the Egyptian stuff. And next thing you know, he's got our brand new Tahoe. He's got it just scratched in there. And he was, like, 8 or 10 by then.

Andrea: 1:08

Yeah. Well, this week he went and bought a desk.

Phil: 1:13

Just out of the blue. Yeah. So, he's 23 now? And he doesn't listen to anything I do, so we get to talk all we want, because he won't listen to it because we don't talk about gaming.

Andrea: 1:24

Yep.

Phil: 1:25

So as long as I don't mention any games, we're solid. But, where I want to start with this isn't necessarily where we're at now, because where we've become experts. Well, Somewhat experts. We're good at the in betweeners. I always call those kids the in betweeners, because you've got the kids who have disabilities that are so large that they get automatic help, the system set up for them, and then you have the regular kids that kind of slide into it, and then you get these kids, and there's a lot of them now, that are in between. They can't quite make it on their own, but they're not really disabled to a point where there's programs.

Andrea: 2:00

And really nothing is set up for them to succeed.

Phil: 2:03

And all it really does is just, as parents, drive you crazy.

Andrea: 2:06

It's just disheartening.

Phil: 2:07

Nootropics are all the rage, and so I get a ton of them in the mail, but in this case, Avantera sent me Elevate. Now Elevate was interesting to me because it had bacopa in it, cdp choline, and instead of overloading it with caffeine, which would make me jittery, they actually did the green tea extract. So I was super curious. It is one of the only products that I've cold tried, and I was pleasantly surprised for sure. So avanterahealth.com. If you put in, TAKEYOURMEDICINE, for the code, you get of course, some more money off, but you'll be pleasantly surprised. It's been a rare occasion where I've been able to take a supplement and feel something that rapidly to help me with both my mood, my focus, and my attention. And I got a lot done that day, which is a big deal for me. avanterahealth.com, look at the elevate and put in, TAKEYOURMEDICINE, which of course is this podcast. So, we wanted to share our journey, because, well, it defined who we are as a couple, as who we are as individuals, and, and quite honest, it's probably been, it has been the thing that has impacted my life the most. We have four kids, but I have to say that raising our oldest, I mean, that one really changed everything.

Andrea: 3:18

Yeah, it kind of defined our lives in a lot of ways.

Phil: 3:21

I think it changed how we see people, who we are, where we go, I mean.

Andrea: 3:26

That's true.

Phil: 3:27

I think it made us better.

Andrea: 3:28

I think you've got a lot of compassion for a lot of people. I see a lot of people come into the store that other people are not very tolerant with and you're very compassionate with them.

Phil: 3:37

Yeah, I always think to myself, one day that'll be my child with somebody else. You better be nice, cause it's, you know, it's hard because he says what he wants to say when he says it. It doesn't make a lot of sense.

Andrea: 3:48

He doesn't have a lot of tact.

Phil: 3:49

Let's jump to how do you know when you have a child that has disabilities? Now some people, their, their children are born, you're like, okay, boom. We're changed. Life is, is different from this moment. We have to redefine ourselves. But that's not really our story. Our story was, I think, much more subtle than that.

Andrea: 4:07

Yeah, um,

Phil: 4:08

How long was it until you kind of knew our lives were going to be different? That we weren't going to have the soccer games and the football and scholarships were out, college was gone, we, our lives were different. How old do you think he was?

Andrea: 4:21

I think he was probably four when I really was like, okay, this is the direction that we're going.

Phil: 4:28

So, by four, let's put a little background to this. By four, he still wasn't speaking in any tangible form. He used to make those noises as he walked around the house.

Andrea: 4:37

Yeah, he used to say, Dugga dugga dugga dugga dugga dugga dugga.

Phil: 4:39

Like all day long.

Andrea: 4:40

So fast, just speed, speed noises. Right,

Phil: 4:43

we didn't know what it was. We thought it was super cute. And then, he was still, it took him, and I'm really glad he doesn't listen, because he would be embarrassed, but like, it took him to like five or six to be potty trained.

Andrea: 4:53

No, he was four, but that was interesting, because I couldn't potty training because he didn't talk. So we had like this communication issue.

Phil: 5:00

He's also stubborn.

Andrea: 5:02

But I was about ready to have Eli and I didn't want to have two of them in diapers, especially when one was four. So I just took away his diapers and he was potty trained completely within three days.

Phil: 5:12

Yeah.

Andrea: 5:13

Like, completely, it was just.

Phil: 5:16

It was a battle of wills. But he was, by four, like, he had no, like, he wasn't, he hit the benchmarks early. So, I remember five and six months, he's walking around, his walking was fine. We hit that benchmark. His crawling was fast. Uh, he was making the right sounds. Eating wasn't an issue. And so it was about, what, three? When we started to say, okay, there's a real problem here.

Andrea: 5:40

For me, it was, so we spent a lot of time in the pharmacy because you were always gone because we started the pharmacy ourselves.

Phil: 5:49

Yeah, and you were kind of a single parent there for a while.

Andrea: 5:52

I had a giant laundry basket in the back of the pharmacy, and there was a little TV back there for, for kids, and he would spend a lot of time there. In the laundry basket with a pillow, watching TV, or playing with the stuffed animals in the front of the store. And we had a lot of customers come in and tell me that, Oh, my kid didn't talk until they were two, my kid didn't talk until they were two and a half. Don't worry about it, he'll be fine. And even his pediatrician was in there, like, daily. Saw him, just in passing, saw him daily.

Phil: 6:20

His diet coke supply was between his office and our child. He had walked passed our child to get his diet coke everyday.

Andrea: 6:26

And even he didn't, seem to have any concerns about Jonas speech. So, I wasn't worried about it. The day that I realized something was actually wrong, was, he was three, maybe three and a half. It was the day that you almost killed my dog because he tried to eat the cockatoo.

Phil: 6:42

It was such a mess.

Andrea: 6:43

And we had to get out of the house.

Phil: 6:44

Cockatoos flying around, the dog jumps up and grabs

Andrea: 6:46

it. We got out of the house and we were going for a drive and you were kind of in an emotional mood, and you expressed that you were really concerned that

Phil: 6:55

That's a super nice way to say that. I appreciate that. Yeah,

Andrea: 6:58

so

Phil: 6:59

I was angry.

Andrea: 7:00

No, you were sad. You kind of expressed that you didn't know if he was going to be normal. Like, that was the first time that either of us said out loud, Something's wrong, and I don't think we can fix it.

Phil: 7:14

That's funny because you look at that one moment in our marriage and you can see, like, honestly, anybody that's listening or watching this, you can see a ton about our relationship because that's, like, really how we work. So, there I am, somewhere between anger and sadness because we all know that when men feel sad, they express anger because it releases testosterone and that gives them more dopamine. And so there I am, like, needing to fix this problem and knowing I can't, feeling hopeless. And then the reason why we work as a couple is because you've got this like superpower into which you can compartmentalize things. I have to process everything. Like, I never can not be processing. I'm currently processing things and you are just, you're like, he's saying digga digga digga. If I can get him out of diapers, we're fine.

Andrea: 7:59

If something's wrong, somebody will tell me. That's kind of what I thought the whole time. If something's wrong, somebody will tell me.

Phil: 8:03

Right, and the whole time I'm like, when do we bring this up? Because it was fairly obvious that he was falling behind with all of his peers. Um, he was better looking than all the other babies, so I thought we had that going for us.

Andrea: 8:16

But, like, he was the oldest grandchild on my side. We didn't live by your family. I didn't have any friends with kids, because we were young. We were, I was kind of isolated with him. Like, he just didn't, we weren't around a lot of other kids, so. His age at least, so I just didn't have anything to compare it to.

Phil: 8:33

Well, and then everybody wants to say the nice thing and be the nice thing. It's, it's actually, I've found it's harder to be like the real people that you end up being really attached to are the ones saying we need to have a talk. You've got an issue. Most people, it's like when I ask somebody how they're doing today, the answer is supposed to be fine. It's the person that, how are you doing today? And you're like, well, if you're gonna ask, I'll tell you. If you don't want to know, don't tell me and. I don't think anybody really said the words out loud until we started approaching people saying, there's a problem here.

Andrea: 9:08

I think that's probably right.

Phil: 9:11

So there he is at three and a half, and now three and a half, four, and I want to jump back just a little bit. So in the very first episode of the podcast, Take Your Medicine, I talked about our journey with, um, infertility. I talked about how we kind of got. thrown through loops and everything else, but to introduce everybody to us, I think that they should know that we got married late. I mean, I think you were

Andrea: 9:34

I'd been 19 for a month.

Phil: 9:37

Right, so it was really late, and then I was 22. So, you know, we got married really late in life, and we were really ready for all of this because about a year later, we waited a long time before we wanted to have kids. I think it was about a year.

Andrea: 9:50

Yeah, I was, we waited for a year. A year. Because I was 20 and you were 23.

Phil: 9:55

Like, we should have already had our first one from the society, from the area we lived in. Like, we were behind, right? People were already asking us at that point. But we've only been married a year. Puts me at 23. Puts you at

Andrea: 10:05

20. We tried for about a year.

Phil: 10:07

20 and a quarter.

Andrea: 10:08

No, I was just barely, barely 20. So we tried for a year and then we started doing all this stupid, pointless tests in the doctor's office.

Phil: 10:18

Right, the whole shebang that I went through on the first podcast where like we paid for the money for exploratory laparoscopy on a budget from school because and what does that even mean? That's like, like, it was crazy.

Andrea: 10:29

Post coital test.

Phil: 10:30

Oh, that was great. The post coital, that was, that was so awesome. Like, you know.

Andrea: 10:37

These were all stupid tests.

Phil: 10:38

Right, post coital.

Andrea: 10:40

Because we're young and stupid.

Phil: 10:41

Right, that was, that was the post coital. I forgot about that one.

Andrea: 10:45

Yeah, I'll never forget that one. Then, so we finally start doing the IUIs, and we did two IUIs. Right. And then, on a whim, I was two days late and took a pregnancy test, and it said I was pregnant. And I was like, well, there's no way that's possible. But the second IUI actually took. And we had Jonas two days before our fourth anniversary.

Phil: 11:08

And we, I mean, like I said, we don't, we didn't really even start processing. There was a problem because, you know, I had to get through pharmacy school. We moved up to, Logan, started the store. We were busy. I, but it didn't take us that long to decide. I think Jonas would be under two when we decided we wanted to start trying again.

Andrea: 11:25

Yeah, probably.

Phil: 11:26

So we wouldn't even realize at that point that there was an issue. I mean, if you look back at it, I didn't realize. We wouldn't have thought anything. He was a little late on things, but

Andrea: 11:34

But he started walking at 11 months, and he was up and running as soon as he started walking.

Phil: 11:39

Yeah, and he's making those gurgly,, burgly, you know, sounds that he always did.

Andrea: 11:44

It sounded like he had all of his sounds at that age.

Phil: 11:48

Right. Life was still the same.

Andrea: 11:49

Yeah, he could eat fine. Like all of the things that you worry about, he was fine.

Phil: 11:54

Yeah. I mean, he was still going to be my little climbing buddy. We had all these adventures, like life was just going to go exactly how we planned it still at that point.

Andrea: 12:01

He was active. He seemed to have good muscle tone. Everything seemed fine.

Phil: 12:04

Then we decided to have another child and that's where we really started to dig into the immune system issues.

Andrea: 12:09

Right. So we probably waited for a year and a half before we started trying for Eli.

Phil: 12:14

Yeah, it wasn't, he wasn't that old. I mean, I remember it wasn't that long.

Andrea: 12:17

Cause we, we knew there was a possibility we would have issues again, so we wanted to

Phil: 12:21

start. As we're going through with Eli's stuff, if you go back and listen to the first podcast, I kind of explain how, after we spent, I mean, thousands and thousands of dollars, and really, to be honest, that whole process probably kept the pharmacy alive for a while with some of the, you know, learning how to compound everything, but that was about the time we were crossing off two different things, so there, the day comes, we're standing in the kitchen, We got, we just traded, we traded a dog for a bird. We wanted to get rid of a dog.

Andrea: 12:47

Oh yeah, we traded your brother.

Phil: 12:48

We gave them the dog and they gave us this bird because this bird hated my brother and would attack him. So I always wanted a bird because I'm a dum dum. And we didn't like the dog. So we thought we, like, won, and then that bird, which we were just sort of watching it, like, it wasn't like a trade trade yet, it was like a

Andrea: 13:04

We were just seeing it, yeah. It was your mom's dog. I don't know why we had your mom's dog.

Phil: 13:07

Right. We were, we didn't know if it was a real trade or not, and so this dog, this bird flies across, gets on the table, and the demon dog, jumps up, puts the thing in his mouth, at which point there was a, uh, there was a struggle. There was, there was a moment

Andrea: 13:22

Where you tried to kill my dog.

Phil: 13:24

There was a moment of true restraint. Like, the patience of your husband at that moment was just

Andrea: 13:30

That dog was evil.

Phil: 13:31

Well, and it was a bad day at work. But we didn't kill the dog. In fact, we didn't even hurt the dog. We got the bird out of the mouth. We actually, I think we were taking the bird over to get rid of it, even potentially on that drive you're talking about, maybe even.

Andrea: 13:44

Yeah, that's probably right.

Phil: 13:44

Because we didn't want it to die. And that's when I finally spoke the words that I didn't want to say to you, which was, I don't think. He's going to catch up.

Andrea: 13:56

Right. Something, yeah. Something like that. And that just knocked the wind out of me because you'd been saying the same thing as everybody else and I just tend to think, well, if Phillip says it's going to be fine, it's going to be fine. So.

Phil: 14:11

Yeah. And for me, I just kept saying what I wanted to be and it wasn't I mean, You know, that's kind of a defining moment, but then when I think back, so Jonas then started talking a little bit, like, um,

Andrea: 14:29

So your, your sister and her family were, they came over one day when Eli was a baby, so Jonas would have been four, maybe four and a half, and he's sitting on the floor right by us, and he said something, and Amber said, he just said, I think it was like, come and play with me or something like that, and I didn't hear it.

Phil: 14:49

Yeah, we thought she was lying. Like I remember thinking, whatever.

Andrea: 14:51

You didn't hear it. We were so used to his babbling noises that, that like I couldn't hear the words that were in them. So I suspect that there was some language in there that we just were not hearing because it was not very, it wasn't articulate.

Phil: 15:07

Then we pushed the potty training issue. You did it. I'm not taking any credit here.

Andrea: 15:11

Well, because we couldn't potty training at all because he, I couldn't potty training because. I'd never done it before and he didn't talk and so and he did a few signs, but not a lot and I had no idea what I was doing. So I don't know around the time Eli was born. So he would have been four maybe four and a half I just took away the diapers one day and he was completely potty trained within three days.

Phil: 15:31

You know Jonas has been a master manipulator of the situation, so we always look at it because of his, like, because he's got this disability, so he has a hard time speaking, which he does speak now. He's got, he's still missing some sounds. He, but I mean, if you wanna talk to him, he'll talk to you all night long.

Andrea: 15:47

He just has kind of poor muscle tone in his mouth is kind of

Phil: 15:50

Yeah. And he was lazy. Because it was harder, he didn't want to work at it, so he was in speech therapy, which, it was just a fiasco, because he didn't want to be different than all the other kids.

Andrea: 15:59

The whole time he was in school.

Phil: 16:00

Like, it was such a nightmare, the whole thing, but he was, even with potty training, I swear the child just was manipulating, like, he kind of knew where he could get away with what he wanted to at times.

Andrea: 16:13

Yeah, quite possibly, but I was surprised that he was, like, as soon as, we took away those diapers. He was good with it. He like he didn't have any accidents after the third day.

Phil: 16:22

No, I mean he was ready. I just think he was just didn't want to do it I mean he used to get away with so much remember when he poured sand in Andrew's ear just because he thought it would be funny Andrew's out there taking a nap and he'd pour sand like Jonas never got in trouble and he's got this funny little personality to him. So you're not quite sure what to do with him you but I think he was always smart enough. Like, I remember going to a lot of his, you know, from that point, he's, he's already in the program. It was up to three. We put him in up to three, which was kind of rough on me, to be honest with you. Because he had to go to that school in Summit, and he was in with the severely disabled kids that would scream.

Andrea: 17:01

That was the, um, that was the school district summer school program. He qualified for summer school, and we didn't want him to, they didn't want him to slip during the summer, so he, uh, They would just take all the kids from all the schools and they would rotate schools. So he was in summer school.

Phil: 17:13

Would you do that again if it would have come around knowing what you know now? Would you put him in summer school? I'm coming back. I just was just thinking that right now. Would you?

Andrea: 17:22

That year I was pregnant with Zeke and I was so overwhelmed. So, I mean, you didn't want to send him and all I could think is I can't handle him. All day. Every day. He needs some.

Phil: 17:33

No, that's way fair. I just remember sitting down, like, there's, it's funny because when you have a child that has these disabilities, at the very beginning, everything that everybody throws at you, you're like, Johnny on the spot, you're on board a hundred percent. And then retrospective, you're like, well, that was a huge waste of time because he wasn't ready for it. There's so many things that we did that were, I mean, we found our way through it, but I just sit there and think of some of the stuff that we did I'm, like that was such a waste of time and effort with the kid because he would cry or he would not do it or we you know, and

Andrea: 18:06

Yeah,

Phil: 18:07

But it's also fair because by the time that Jonas was so that would have been like seven Or eight by that time because Zeke was around you would have been and Zeke was was hard for you like I think I think back on that I really think that you were struggling with some postpartum that I was completely oblivious to

Andrea: 18:24

I think I was just overwhelmed. I think that

Phil: 18:27

Yeah, that could have been too. I think there was more there than what I was seeing. But, I mean, I was young, and

Andrea: 18:32

You just were gone a lot, and Zeke was hard, and Jonas was hard.

Phil: 18:35

Yeah, and it's the pharmacy. Yeah, I don't know. I wish I could have reprioritized a lot of things in life, but I suppose we wouldn't be where we're at if we did that. Okay, so Jonas, there he is. Jonas is doing fine. We move through, and then the next big thing we notice, he starts picking up a few words. He goes to school. He obviously has ADD like, it's like visible across a Walmart. So you see all the other kids with the ADD. ADD inside of Walmart and Jonas is the one that you would have picked out out of all the kids across the whole way you'd say that one has ADD. So we but we were hesitant on ADD medication. Well, I was hesitant on ADD medications I don't know how you felt

Andrea: 19:12

I think that Well I grew up in a house where my mom would Tell my brother to go take his Ritalin every time he moved

Phil: 19:21

right, so and I had that same like if you were like structured,

Andrea: 19:25

but you had the I don't, if I medicate my kid, I'm a failure syndrome.

Phil: 19:29

Oh, absolutely.

Andrea: 19:30

So, we decided to start treating his ADHD, and immediately, he started reading.

Phil: 19:38

Right, so, so there was that, there were two different pinnacle times. Times where I just came to the realization. So, there I am, I own my own pharmacy, I sell hundreds of prescriptions a month, maybe more for ADD, and I'm like, oh, I don't want to do that. And I almost think that Jonas, Jonas changed the way that I see ADD, and I think that that has now impacted a lot of people.

Andrea: 20:02

Probably, yeah.

Phil: 20:03

And, and so it was funny though, because I most certainly was, if you have to treat the kid with ADD medications, you should exhaust everything else first, and we should have like, folded on that Years earlier. We gave it to him and he started reading immediately after the ADHD.

Andrea: 20:22

I think he was second grade when we started treating his ADHD. And, yeah, like, cause they were trying and he was, but as soon as we started treating it, he started to read. And he was, like, he started doing a lot better in school.

Phil: 20:37

But then we got zombie Jonas.

Andrea: 20:39

Which we didn't even know, which was interesting. Um, we had to pick him up early because you had a family thing. Yeah. And so we picked him up early from school one day and that was the first time I had seen him on his medication and he was a zombie and I, like, we felt horrible.

Phil: 20:53

Yeah, that was a bad day. So, so with, with kids, when you start them on ADHD medications, what you see is there's dose related effects. And so you get the good part of the effect, which is they get to focus, concentrate, they have more impulse control. But the bad part of it is, is that their brains are so overwhelmed. You always see a change in personality like it's it's really a thing and I remember with Jonas we started him out and we just kept moving the dose up according to what we were hearing from the school district Like we started out low and they're like, okay that works But we need a longer acting and we were up and I remember he was we went from 5mg of methylphenidate immediate acting to 20mg long acting in, I swear it was two months. Like, it was quick because the teachers were seeing such good results.

Andrea: 21:37

And I do have to say that his teachers were genuinely invested in him. It wasn't that they just wanted him to sit down and be quiet. His teachers loved him and were genuinely, like, supportive. excited to see that he was learning and doing well in school.

Phil: 21:49

And that's a lesson that I think we've both learned from being parents, is that there's no good answers, there's just worse answers.

Andrea: 21:56

That's right, yeah.

Phil: 21:57

You think as a parent, you're like, OK, I choose the right thing, it'll work out really great, everything will be fine, and then at some point in parenthood you realize, OK, they're all crappy answers. Like, everything is terrible. But this one is less terrible at this point, and So I'm going to take that less terrible answer. And I think that's what one thing having a child with a disability taught me right away, was there's no utopia, there's, there's no, the happy ending does not look the way that you see, there's no, that kind of stuff. And I, I think it's like, as a parent, that it makes me happy that I learned that lesson. I just wish it wasn't at the expense of my child. The most important job any pharmacist has ever had is either making somebody start to use the bathroom, or stop, or make them regular. In fact, that is the question you get most of the time in the pharmacy. And forever I told people to take Miralax, and I was so wrong. Inulax takes a soluble fiber of the oat fiber, Puts it with an insoluble fiber, bacillium fiber. So you get the perfect mix of fiber, which none of us get enough of. But then they put inulin in it. Now, inulin helps to draw water in, but it's from an all natural source. So you feel really good about using it. Inulax. com, put in MEDICINE20. That's the code to help you get an extra percentage off. And inulin is fantastic for making everything flow good. And when that flows, the rest of your life's great. Inulax, put in MEDICINE20. I never thought I would have to care about shampoo and conditioner until my hair started to get a little bit older and, you know, if you start losing hair you're always really concerned on what you put in there. Just putting any shampoo or conditioner in there is not a great idea. BondiBoost is really particular about the ingredients they get and they use all natural ingredients to help your hair look fuller thicker and yes they really do work and the best part is you'll love the way that it feels it smells I get like no complaints at all from BondiBoost. So get their BondiBoost shampoo and conditioner. The HG line is the way to go and then when you go to BondiBoost.com put in MEDICINE20 for an extra percentage off

Andrea: 24:01

Oh, so let's keep going down the ADHD journey of, like, medications.

Phil: 24:07

Okay, so we're going to the, are we going to the meteor?

Andrea: 24:09

Yeah, the meteor.

Phil: 24:10

The meteor incident. Alright, so.

Andrea: 24:12

Fourth grade.

Phil: 24:12

Fourth grade, we've moved his dose up. He's now on 40 milligrams of methylphenidate, give or take. It's coming to the end of year testing, which we found out later is a trigger for the kid.

Andrea: 24:20

Bad.

Phil: 24:21

Bad, bad trigger. Okay, so, he comes home and he's had a full panic, you had to go pick him up, if I remember right.

Andrea: 24:29

That. Yeah. Probably he'd had a panic attack at school.

Phil: 24:31

Mrs. Littlefield

Andrea: 24:34

Probably. Yeah.

Phil: 24:35

Who was not a teacher at the time.

Andrea: 24:36

She was, she was, she was like a resource aide

Phil: 24:39

Had pulled him out. And this is about the time. Yes. We, our fourth grader had a phone like, just so you know what kind of parents you're dealing with here.

Andrea: 24:47

Yeah. cause if you have a kid that's got issues, they need to be able to get ahold of you.

Phil: 24:51

Right. And it was also really like, it was a suiting technique. Right.

Andrea: 24:54

But he had, he had an iPad. I don't think he had a phone. He had an iPad because he had to use it to type because his motor skills are so bad.

Phil: 25:01

Oh, that's right. But on that iPad we had stories. Like, he was big into stories. Which now, retrospectively, tells me a lot about the behaviors. Because ADHD people really love having soothing stories in the background. It allows that, that, it helps calm their brain.

Andrea: 25:15

And he's definitely on the spectrum as well. So, he's got a lot.

Phil: 25:18

Right, but we didn't know that at the time. We just knew that we turned on the stories and he got better. So we get, you get the call and you have to, I think you had to go pick him up because he was freaking out. So he comes home and I remember he went straight to his bed like he wouldn't come out of his bedroom.

Andrea: 25:34

Yeah. No, he was terrified to go outside.

Phil: 25:36

So he was there in his bed when I came home and you explained it to me, and then me being the all knowing, super smart, brand new parent, which is sarcastic, because anybody who's had kids knows, if you think you know anything as a parent, you're, you're not there yet.

Andrea: 25:50

You are better about being compassionate about things like this than I am. And I mean, obviously

Phil: 25:55

Not this time. Yeah. You are way better.

Andrea: 25:57

Um by the end of it, I was like, I don't even understand why this is a thing.

Phil: 26:02

Right, and so he, so then we tried to send him back the next day, and you had to go get him again. It seems like it was two or three, maybe even four days in a row where you had to keep picking him up.

Andrea: 26:11

Uh, this went on for two weeks. My stepmom was the computer lab lady, and so he would not go outside for two weeks. Jonas was a cute, sweet little kid. All of the teachers loved him, and all of the aides loved him, and we were really fortunate because they were very accommodating. But he spent every break, every recess, every lunch break, in, with my stepmom.

Phil: 26:36

Headphones.

Andrea: 26:37

With his headphones on. They let him wear headphones during class, and I had to pick him up from school most of those days. Like, he stayed the whole day, maybe three or four times over the course of two weeks.

Phil: 26:48

Well, quite honestly, he's a trendsetter.'cause now that seems like there's always like seven kids walking around with headphones on. So, I mean, he was ahead of the curve on that one, but at that day, he was the only one that did it. So when we break down to why he was feeling this way, so what sent him home? Everything else it, he was sure that we were all gonna go out the same way the dinosaurs were. He was waiting for the next meteor to come and hit us. And he was so afraid that he didn't wanna go outside in case the meteor came. Am I missing anything? Is that the?

Andrea: 27:15

That was basically it.

Phil: 27:17

But it took a little while to get it, and I remember we were into it pretty deep, I don't know how far, and I, I decided that tough love was the right decision. Remember when I decided that tough love was going to be the way to go?

Andrea: 27:28

I don't remember exactly.

Phil: 27:29

So we, I mean, we had, we had Zeke and we had Eli at this age.

Andrea: 27:33

Mm hmm.

Phil: 27:34

We were running on no sleep.

Andrea: 27:36

I think we had Finn too.

Phil: 27:38

Yeah, and this is, like, the first time that the state of Utah's Department of Licensing decided to come out

Andrea: 27:45

It wasn't the first.

Phil: 27:46

Well, it was one of the times. Like, it, like, the pharmacy was, like,

Andrea: 27:49

Yeah.

Phil: 27:49

And it's always, like, the way that dad goes, you know? With things you try to explain your behavior as a parent by putting it on work, which isn't, like, I guess it's just what happens. But I remember going in and I wanted tough love. Now this is the child that couldn't speak, that took forever to have to get potty trained. I mean, he obviously had disabilities. And I went there and told him that he just needed to toughen up and he just needed to go back to school and it, and I decided that the reason why I was gonna do it is because if he didn't start going, if he didn't get back on the horse, he was never gonna ride again. I think I was wrong.

Andrea: 28:24

I also think over the course of the two weeks we both. became more how should I say this? We became more aware of how severe the situation was and we developed a lot more compassion over the course of the two weeks because at first it just seemed like we needed to just nip this in the bud and get him back, you know, back to normal.

Phil: 28:44

So we go up there and I'm talking to him. We had tough love. Next day he goes and he is just sobbing because he's trying to be brave for dad. He comes home again and as a pharmacist it should have hit me earlier. That was the minute I'm like, what if we just don't give him his pills?

Andrea: 29:01

You know what should have been a big old red flag for us? Like something that we should have He didn't have eyebrows or eyelashes. He had been picking out all of his eyebrows and eyelashes for like nine months. All of fourth grade he didn't have eyebrows. Probably for like two years he didn't have eyebrows or eyelashes.

Phil: 29:17

So, I mean, I understood how methylphenidate works. And everybody that's out there just, you know, I mean, the way that any stimulant works, you end up getting both the good and the bad from it. But, but he was succeeding at school, and I thought that the cost of success within the school district, you know, within school, the things he was learning, was, was worth what we were seeing. So we were like, he picked, and then, you know, we already had him on melatonin because he couldn't sleep, and sleep is a whole other like, way crazy thing. And then at some point I realized, what if we just stopped giving it to him? And I remember when we quit giving it to him, the next day was better, and by the third day, he was still afraid, but he was functioning again.

Andrea: 29:52

Mm hmm.

Phil: 29:53

But then we had the decision that was just miserable to make, and that was, do you medicate your child so they can do well at school? And then his eyebrows started growing back and we're like holy cow all of those things we were seeing wasn't just part of his disability we were doing a lot of that.

Andrea: 30:11

Yeah

Phil: 30:13

And that was like that was like a really hard point for me because I should have known better like I kept thinking I should have known better we even started him on an antidepressant and that was a rough one for me too because I thought to myself he's never like I haven't seen the side of him. He's so young. Why are we having on antidepressants? And I think if I remember right, we got him a lower dose on methylphenidate, we got him off the antidepressant because he no longer needed it, and then that was when, we went from 40 mg at that point, By the time he was a senior, he was taking 18mg, because we were able to use the medication, but he didn't have to go as high, and if we went too high, his eyebrows started going, so it was like that. He'd come home with those bright red eyebrows, because

Andrea: 30:53

He'd start pulling out his arm hair and leg hair as he got older.

Phil: 30:56

So then we'd drop it, and so we always had that struggle between ADD and, and the side effects. And so, I think

Andrea: 31:01

Well, and we also, we tried, like, we tried all the medications. We tried Adderall. No.

Phil: 31:09

He cried for like three days straight.

Andrea: 31:11

Right. Vyvanse gave him the worst anxiety.

Phil: 31:14

Right. We tried like every single one of them and with him, it came out that methylphenidate was the most appropriate.

Andrea: 31:21

And it's really frustrating. That has been so frustrating because he doesn't respond well to any of them. He does the best with that one. He can handle Zadarol now. But he truly, truly cannot function without it.

Phil: 31:34

No. And he still hates it. Like that's the other thing, like it's, like here he is, he's 23.

Andrea: 31:39

What we learned from that summer school program was that yeah, we want him to have something during the summer so he doesn't slip behind, but let's just do tutors. So we've had tutors since he was in first or second grade.

Phil: 31:50

Right.

Andrea: 31:51

That's when Cam started.

Phil: 31:52

And the thing about teachers is this, and I love teachers, because what they do for the money that they get paid, it like was super easy for us to find a teacher in the summertime to pay him to, like a full teacher, somebody who's graduated. to be his tutor and I was like, I almost felt like it was robbery. I'm like, I gotta pay you more than what I'm paying you for this one on one because of how little they get paid. But, you know, they get paid so little, you can get teachers.

Andrea: 32:20

Yep, so we started Cam when Cam was still in school. And, yeah, he helped Jonas graduate. We had him from like second grade all the way through. Till he graduated.

Phil: 32:32

Now we, in the state of Utah, the kids usually take seminary so they got this extra credit because they make it so you can actually graduate almost a year early if you don't take seminary. So we didn't have him in seminary and we gave him extra study periods. We didn't let him come home. So he, he'd always have hours where people would help him for the most part.

Andrea: 32:50

And he did summer, you would take classes online in the summer.

Phil: 32:53

Let's be completely honest here. In the summertime, I'd sit next to him and do almost all of the work, but he would have to take the tests.

Andrea: 32:58

And then Cam would like drill it into his head and he could take the test.

Phil: 33:01

And he could pass them. So, because I had decided all the way through high school that he needed a diploma because he's an in betweener. Without a diploma, no matter what it was going to take, we were getting him his diploma. Yep. So we, we brought in tutors, we helped him with homework, we, we did everything and we got him a diploma because I had a plan. This time I had a plan and this plan was a little bit better versed. So we would go to IEPs, which, anybody that has kids with disabilities, would know that the IEP is to help them graduate. And we decided that we needed to get him his diploma. And with that, we got to the point where he got his diploma when he graduated. And we got him inside of one of like six programs in the nation.

Andrea: 33:41

Isn't that sad?

Phil: 33:42

There's like six programs, they're called adaptive programs. And they're hard to find, and we happen to have one in town, and it's really just by the grace of God. Like, it's not like we searched it out. We went and saw some others, but Utah State had an adaptive program. And it's sad, though, because those kids that are in between are, so with this whole process that we have, those kids that are in between, they have such little options, life moving forward. They get through co high school, and you think his parent high school's there. And I remember sitting, a lot of nights. being angry and sad because my life was so much easier than his.

Andrea: 34:19

Yeah, I I don't even know what to say. Yeah.

Phil: 34:26

So, but, so he's now 23. He's, he went to a two year adaptive program. He holds a part time job. He changed my life for the better in every single way. It's one of those things where you're like, okay, I couldn't be who I am today. But if I had advice to give anybody, the first thing I would tell people is that don't believe anybody else is going to be an advocate for you and your child, because the system is like overrun. It's not the people, but the system is just overrun with individuals. What would you, like, somebody comes to you and says I have a kid whose an in betweener.

Andrea: 35:05

What would I tell them to do?

Phil: 35:06

Mm hmm.

Andrea: 35:07

All of the friends that we have that I talk to, I, I tell them, make sure you do as many classes during the summer like we did with Jonas.

Phil: 35:15

I always tell them that don't look at the benchmarks. Like the worst thing you can do, like that moment when you realize that soccer games don't matter, that Jonas went on one date in high school. Like you have to start separating yourself out as much as you want to be one of the other parents. You got to go find other parents who understand you because if you don't, you will go home sad and angry like every night. You have to just start saying, okay, I got to go find somebody else with an in betweener and you've got to find that support network.

Andrea: 35:40

Yeah, we've been lucky that we've got like three or four friends actually that have kids in similar situations, which if there's that many of them why are there not more options out there?

Phil: 35:48

I think that there will be more options, and I think it has a lot to do with finding your way through it and using the school systems properly. So, that's our oldest child, and I think it really has defined a lot of who we are, and I think that it's made, I think Jonas has made the world better in so many ways, and I think one way that he's done it is, I look at a person now a little bit differently. Like, every person that walks in, I think, that's somebody's son, that's somebody, that's somebody's kid. And at some point, that dad sat in that room and was sobbing because he knew he couldn't fix that problem. And I don't know if I would have learned that lesson without Jonas.

Andrea: 36:27

Yeah.

Phil: 36:31

This is Take Your Medicine Podcast and this has been Philip Cowley and my lovely wife Andrea. And we appreciate you listening. And any of you who need support or have children that are in betweeners reach out, there are so many good groups you can join. Know that you're not alone and please, just go give that kid a big hug because whoever they are is just perfect. They don't have to be anything else.