A Mother’s Fight, A Son’s Victory | Chris Swanson & Roseanne Neises

In this episode, Chris sits down with Roseanne to share the powerful story of raising her son Luke, who was born six weeks premature with Dandy-Walker Syndrome. Now 22, Luke has defied the odds—graduating from Grand Blanc High School, pursuing a degree in Media Production at Mott Community College, and working at the Genesys/Henry Ford Athletic Center. Together, they reflect on resilience, perseverance, and what it takes to support and believe in someone every step of the way.

Transcript

SPEAKER_00 0:00

Moms are great. And uh my wife is a boy mom, and you're a boy mom. But one of your boys has a special gift.

unknown 0:08

Yes.

SPEAKER_00 0:09

And we're gonna talk about that because it's not been an easy road. No, and it's not only just not been an easy road, but also because of how the system has created obstacles for a mom like you to navigate the system. My name is Chris Swanson. Welcome back to another episode of the Working Class Podcast. I have one of the nicest persons on my show, Roseanne Nices.

SPEAKER_04 0:33

Yes.

SPEAKER_00 0:34

Tell me about Luke.

SPEAKER_04 0:36

So Luke is 22. He attends Mont Community College. He's in the media arts program there, and he works at Genesis Athletics Center as the men's locker room attendant.

SPEAKER_00 0:47

I know this.

SPEAKER_04 0:48

Yes. He has uh a syndrome called Dandy Walker syndrome. It's a uh congenital uh birth defect that affects And it's Dandy D-A-N-D-Y. Yes, D-A-N-D-Y Walker. And it's I think the name came from the two doctors who kind of discovered it. And um so it affects the cerebellum, which is you know the back of your brain. And there's a portion of the cerebellum at the base of your brain called the vermus, and it controls your motor functions, your balance, your critical thinking skills. And um if individuals with Dandy Walker will have an absence completely of the vermis, or they will have a partial absence and a cyst forms in that space where it would normally lie. Um and Luke fortunately has just a partial absence, um, but it comes with some other um defects. You know, every person's experience with it is different, and it can affect the heart, it can affect uh their fingers, their facial abnormalities, um, the they can have hydrocephalus. Um there's a variety of things, and in very rare, rare instances, an individual with Dandy Walker will have craniosinestosis where their soft spots are fused together prematurely upon birth. And unfortunately, Luke was one of those.

SPEAKER_00 2:16

Got it. And when that happens, how does it change the birthing process and development?

SPEAKER_04 2:21

Changes everything. It it um it definitely, I think it's all about attacking everything early. Um, and that in it depends on when you find out. I mean, if you if you find out like I did during pregnancy, there's a lot of things you can do to plan and prepare for it. But there are people who have no idea and they don't know until after the child's born. Sometimes they don't know until they reach school. And um now we know, we didn't know back then when I when I was pregnant with Luke, but now there are more documented cases of individuals who find out as an adult that they have some variation of the syndrome, and it maybe answers questions about why life was hard to navigate for them.

SPEAKER_00 3:06

So the two boys you have, Luke is oldest or youngest?

SPEAKER_04 3:09

He's the youngest.

SPEAKER_00 3:10

What happened and what was that day like when you found out?

SPEAKER_04 3:14

So it was my 32nd birthday, and I was about I was probably close to 19 weeks pregnant. Um two weeks prior, I had gone in for a uh along that time of your pregnancy, around 16, 17 weeks, you normally get a blood test that checks for birth defects and abnormalities. And I had gotten the blood tests, but because I was seeing a high-risk doctor, every one of my visits included an ultrasound. Um, I had had a rough pregnancy with Max, my oldest, and so I had automatically went to a high-risk doctor the the second time. And um, so during this ultrasound, I noticed the radiologist who was a very talkative person, she kind of stopped talking and she kept scanning the same spot on Luke's head over and over again. And so I she then she asked me, Are you gonna have an amniocentesis? And I I thought to myself, I said, Is that routine? And she said, Well, how old are you? And I said, 31. And she said, Um, oh, I th I misread your chart. I thought it was 37. And she said, We recommend that for individuals over 35.

SPEAKER_00 4:25

And and amniocentesis is a fluid draw from the amniotic sac to test the fluid to see if there's any congenital issues or other issues.

SPEAKER_04 4:34

Correct, correct. And um, so she kind of she backed off. I got done with the ultrasound, but I knew in my gut when I walked out that door something was wrong. And um so I went, you see the doctor after this visit, you know, they did the blood work, that was it. I went home. And about four days later, I was at work and I got a call. And they asked me if I was in a private room. So I went to a private room at my office and shut the door. They like verify your social security number, who you are, all this. And they told me that my um blood work showed positive for Down syndrome. And um, they wanted me to come in and repeat the blood test that 40% of the cases are false positives, not to worry. So I drove from Farmington Hills, I was working there at the time. I drove to Hurley Hospital, redid the blood test. Long drive. Long drive. It was it was a terrible drive thinking about it and repeated it, and I went back to my life again for the next four or five days. And that following Tuesday was my birthday, and I was working, and I got the call again that morning at about 10 a.m. And they said that this time it had tested positive. They were feeling like it was leaning more towards spinal bifida. It made no sense to me. They had done so many ultrasounds up to that point. You wouldn't, you would see that on the scan. So they wanted me to come in and repeat the um, they wanted to do a, they called it like a third-level ultrasound and an amniocentesis. So I had to call my husband, my ex-husband at the time, and he met me at the hospital again, another long drive from Farmington. And um, they did the amniocentesis first, and then they re did the ultrasound. And when Luke she kept again scanning that same spot, and I just finally asked her, What are you looking for? And she said, I'm looking for him to flip over. We need to see the back of his head. And so about that time he flipped over and she got the shot she needed. She just walked out of the room. The doctor followed her back in. He took one look at the screen. Excuse me. He took one look at the screen and um said, I heard him say the initials DW something. I I wasn't even sure, but I know I heard DW. And he said, Why don't you go ahead and get dressed and um meet us in the conference room? And so I did that. My husband and I went into the conference room and sat down. He wrote the words Dandy Walker syndrome on a post, a yellow post-it note, slid it across the table to me, and said, Do you want to terminate? That's how I was told. And um I I just I I was in shock. I can remember, I remember looking at the post-it note and saying, I don't even know what you're telling me. So what would make you think you could ask me a question like that? Like I don't even know what this means. And I remember him saying, It's not good. It's not good, the outcome's not good. You know, his quality of life won't be good. And he said, But you you have some decisions to make. And um he said, but maybe go home and do some research. Now, mind you, this was 2003. This, you know, the internet, all of this was relatively new. My skills at at doing any of this was pretty limited. And so I um I remember just leaving there that day in shock, not knowing what to do, and left and went home and started, got on the internet and just started looking. There was limited info, almost nothing out there. And everything that I was finding were cases outside of the US. These were these were people in England, in Chile, like all over the world. And I'm thinking, what is going on? And so I couldn't get a lot of really good answers. I uh I kept finding new ways to navigate it and try to dig more information out, and uh, it was pretty scary. There was nothing positive out there. Um, you know, his quality of life was the expectation was next to nothing. Um it they made they it appear that, you know, in all cases they have hydrocephalus, they'll have to have a shunt, they um, you know, they'll have severe learning disabilities, and um, a lot of the pregnancies aren't viable. They don't even make it to term. Um, and so it was there was just a lot of information that was not accurate, I think, not up to date. And it was really hard to make any kind of clear decision. Um, I think for my ex-husband, it was never a question that like you were just gonna move forward. I think for me, though, privately, I was terrified. Like, what does this do to our life? Like, what you know, do what are we gonna do? We have another child, and how is this gonna disrupt our home?

SPEAKER_00 9:31

These are the decisions that people don't realize, people in your situation have to make.

SPEAKER_04 9:37

Exactly. They don't realize. And they and a lot of times I think people they take what they're being told from doctors at face value. Well, you're the doctor, you must be the expert. So you must be right. And so that makes it even more terrifying. And I just kept thinking, how's you know, I was the breadwinner of the family. So I worked a long hours. I had a a pretty stressful job. I worked, you know, an hour and a half away.

SPEAKER_00 10:09

Um what was your profession?

SPEAKER_04 10:11

I uh I worked for Rocket Mortgage for um 28 and a half years. At the time, I was in on the sales side, I was working for one of the vice presidents of sales, and he, I mean, he was a busy guy. I mean, our we worked from sunup to sundown, sundown. And I mean, I I was at kind of one of the peaks of my career early on, and it was just finally, like, I don't know, just making it, you know, we were we weren't just surviving, we were breathing easy for the first time in my life. And um, it was scary. You know, all these things grow through your head. Like, what are you, how are you gonna navigate this? Like, who's gonna take care of this child if he needs round-the-clock care? Am I supposed to quit my job? We would have, we would lose our home, we would lose everything. And so I um I remember looking at all options were on the table for me. And I um went back and asked for some information on some specialists, you know, who who else can I talk to about this? So I was referred to Detroit Medical Center, and thank goodness I went and the I the day that we went to the appointment, um, we met with a uh doctor, I don't know if he's still there, his name was Dr. Sude. And um it was like night and day when we left Genesee County and went to Detroit. Everyone I had spoken to here, the sky was falling. He, you know, all the expectations of Luke's life was he would be, you know, probably paralyzed, he would have zero quality of life, you know, um, zero intellectual abilities. And so we met with this doctor, and he just kind of laid it all out on the line. He he even brought up a picture of the brain, showed us how this all works, showed us the various cases of the worst case scenario, the best case scenario. I had taken all my scans with me and he looked at it, you know, he said, You won't know a thing until he's born. You can sit here and predict all day long. He said, You won't know. He said, I'm gonna give you my professional opinion and then my personal opinion. And then he said, Personally, I think you're going to be looking at the better case scenario. He said, But there's no guarantees. You just don't know until he's born.

SPEAKER_00 12:31

Did that help you?

SPEAKER_04 12:32

What helped me was during this moment, as he's saying all of this, I'm sitting in the chair, and the entire time Luke was kicking and kicking and kicking to the point where I was almost getting like a stomachache. He was kicking my sides. I could feel him moving. It was like he heard it. It was very odd to me. It was just, it was a sign. Like he was saying, Hey, I'm Don't let me go. Don't give up on me. I'm here. And so I just remember walking out of that appointment and I thought, I guess we're all in. This is it. This is our future, and I gotta figure this out. And so that's what we did.

SPEAKER_01 13:12

And my gosh.

SPEAKER_04 13:13

Yep. Now I'll I'll never forget that. And he hadn't really been active up to that moment. Like, you know, a little bit of movement here and there. And he, which he at the at that point in my pregnancy, he should have been more active. And it he was just, it was all on that day. And so I I knew that that was my my indication I needed, I needed to go forward. And uh the next, you know, the rest of my pregnancy, it wasn't easy. I wouldn't say that I jumped in positively. I had dark days. I had days where I had a lot of pity parties. Why is this happening to me? You know, and I had a friend tell me one day when I was having that moment of, I can't believe this is happening. He said, This isn't happening to you. God saw a child in need and brought him to a mother who could handle it. You have to stop making it about you. It's about him.

SPEAKER_00 14:04

Is that what you tell a mother right now who may be in a dark day?

SPEAKER_04 14:07

Yes. Yes, I would. You have to shift that focus. You have to shift it. And you have to also shift the focus off of it being a burden and to looking at the blessing that you're about to be given. Because I mean, I could go on, I could, that could be an entirely different show. A long episode of all the blessings that Lucas brought you into this world. Oh, so many. So he's a he's a bridge builder. He he built so many bridges just by being born and just so let's get to the bridges.

SPEAKER_00 14:40

He uh came is full term.

SPEAKER_04 14:43

No, he was premature, six weeks. Okay. Um, and when he was born, he um did not have to have a shunt. He did have a large head, and he didn't they did not shunt him. His eye was closed, which is another thing that Dandy Walker will affect is their eyes. His left eye wouldn't open, and his um his head was shaped really weird. And uh I remember asking the doctors while he was in the neonatal, what's going on with his head? Why is it shaped like this? And they all kept telling me, there's nothing wrong, it's part of the syndrome. Well, I had been reading everything about this syndrome for months. Nowhere did it say his head should be shaped like this. And um, so during his stay in the NICU, I struggled because um the doctor who was assigned to us, uh I don't I don't know how to put this into words, but I don't think he appreciated my involvement as a woman. I would ask him a question, he would answer my husband.

SPEAKER_01 15:45

Oh.

SPEAKER_04 15:46

And he even wrote in Luke's medical records because I would always ask when I would meet with a new specialist or a new doctor if I could have a copy of their notes afterwards. Because I was, you know, I kept a file because I was taking him to a lot of different specialists, and I'd I wanted to know what was being said. He'd even written in one of the records that the mother was very aggressive.

SPEAKER_00 16:07

And um was it a cultural thing or just a rude thing?

SPEAKER_04 16:11

I think it was maybe it was a cultural thing, possibly.

SPEAKER_00 16:14

Note to self.

SPEAKER_04 16:15

Yeah, exactly.

SPEAKER_00 16:16

And so just when you're dealing with moms, just be kind.

SPEAKER_04 16:19

Yeah, just be kind. And um, and I think maybe because I I challenged everything. I, you know, I I was not and not rudely, not I'm never calling anyone a liar. I appreciated everything Hurley Hospital did for all of us. But um they they told me he was blind, that was not true. They told me on the um second day that he was born that he had brain atrophy. That was not true. Um it there were so many things along the way that we were told that had I not said, I want a second opinion, that that I can't imagine where our path would have gone. Um how long was he in the hospital? He was in the hospital for 16 days.

SPEAKER_00 17:01

And it took that's much shorter than I anticipated. Exactly. It was.

SPEAKER_04 17:06

And he was never on any type of um like breathing machine or anything. He was born early, but they had anticipated an early birth because of the size of his head. So I had been getting steroid injections. They were they were preparing for it. So um he I got him released on day 16, was the first day that the doctor had the day off. And I had convinced the person covering for him to release him and so that I could get him to Detroit Medical Center because I didn't believe what they were saying about his head.

SPEAKER_01 17:37

Got it.

SPEAKER_04 17:38

And um, he was on a feeding tube when they released him. And because he he, you know, when they're born early, a lot of times they don't have that ability to eat properly. Right. And so he came home with a feeding tube. And I also felt like I could get him eating if they would get that tube out and let me just work with them. Because I had been working with some people at the hospital. They were showing me different exercises to do with them and things that we could do to keep it.

SPEAKER_00 18:02

He just wasn't, I mean, obviously, being either bottle fed or breastfed, he wasn't able to swallow.

SPEAKER_04 18:07

Yeah, it's it's that like sucking motion. Sucking motion, okay. They don't quite have and you have to do, you have to like almost stimulate their mouth to get them to do it. So the NICU has different rules than the pediatric ward. So they have, you know, they have to have a certain number of calories. There's just certain things they have to do to protect them. Right. And so um the person covering for the doctor finally agreed to release me. And so she she let him go. And um I the next morning I took him to Detroit Medical Center and met again with Dr. Seude. And he took one, he, in fact, he was walking past the room. They had taken us back to the room to wait for the doctor, and he was walking past, and I was undressing Luke, and I had taken his little hat off his head. He stopped in the hall, backed up, and walked in the room and said, Where are you coming from? And I'm I'm thinking, what? And he said, Where where is this a did you just have this baby? And I said, Yeah, he's uh coming from Hurley Hospital. And he said, How old is he? And I said, Five weeks. No, the one at the time he was two weeks old. Two weeks. And he said, Did nobody tell you that his soft spots are fused together? He saw it from the hall, just from taking one look at the shape of his head and knew that something was wrong. And so two weeks later, Luke had his first cranial surgery, and um they opened up all the um soft spots in the sagittal line of his head, which is nose to the base of the brain. Yep, yep, front to back. And so he did pretty well.

SPEAKER_00 19:39

Um, in fact, he That had been tough for you to just let him go off into surgery, knowing that your little guy's having brain surgery.

SPEAKER_04 19:46

Yeah, and if I'd only known that that was that was not gonna be the worst of it, uh that day was terrifying. And I thought that that was gonna be the end of it.

SPEAKER_00 19:57

And what was the purpose of that first surgery?

SPEAKER_04 19:59

To re to open the soft spots. Um, because your your fontanelles are supposed to remain open for the first like probably 24 months before they fuse together because your, you know, your brain, your skull continues to grow for the first couple years. So if it doesn't, if they fuse prematurely, then it can cause brain damage because it there's right, it's not leaving any room. And so um he did well from the surgery, very well. He's a really resilient kid. And um, afterwards, he wore a helmet for about six months, and the shape of his head changed quite a bit. It did look different, but he wasn't meeting his any some of his developmental milestones. You know, he was definitely behind and um not rolling over, you know, just things that he should be doing. And by his first birthday, he was not crawling anything. Um he would he would attempt to, but he would lay his head on the floor and kind of push it like a wheelbarrow across the floor. And um I took him to his one-year checkup, and I still to this day, when I look back at photos now and I see what his head looked like on that day, I don't know if it was blind love, but I I didn't see the progression of what had happened again. So his soft spots had refused since the first surgery, and this time it was everywhere, and so they had to go in and do a second surgery, and this time they cut him from ear to ear, front to back.

SPEAKER_00 21:34

Oh my gosh.

SPEAKER_04 21:35

They open up the entire skull and um rebuild it, basically, put it back together. And um And he was how old at this time? He was 15 months. Yep.

SPEAKER_00 21:46

Please tell me that's the worst of it so far.

SPEAKER_04 21:48

Yeah.

SPEAKER_00 21:49

You think the first one was bad, but the second one at 15 months.

SPEAKER_04 21:52

It was uh because this one it it involved um we had to have so many things to prep for it. Like he had to have his ad. Noise out before the surgery, he had to um get a cardiology clearance, which he has five heart defects. Um, so he had to have a cardiology clearance, he had to have a plastic surgeon involved because the the cardiologist and the I guess the neurosurgeon, they go in and do the first part where they open it up and do the repair, and then a plastic surgeon has to come in and close it up and put it back together. And what we didn't realize was that the insurance only covers the first part of the surgery. So thank God we had two insurances, but I think about people that are uninsured that are uninsured or don't have that primary and secondary insurance, or don't have that level of health care. Level of health care, exactly. What what do they do?

SPEAKER_00 22:51

And it's not even the parents, but think about those kids have no say in it.

SPEAKER_04 22:55

None. Nope. No, and so I uh yeah, we call him our million-dollar baby because it is I mean, it I I can't even imagine what you would do if you didn't have health care. He was in the hospital after that for five days. He was supposed to be there more, but being Luke, he did and being mom.

SPEAKER_00 23:14

Yeah, yeah, and the aggressive mom.

SPEAKER_04 23:17

Yeah, the aggressive mom. So he did really well though after the surgery, but he came home and his head was like, the only way I can describe it was like a marshmallow. It was so soft. And so he had I had to take a month off work and stay with him and keep him on the main level of our house because we still had a helmet on? He you they can't even do the helmet at first because there's so much swelling. Oh and so um I basically had to create this bed out of a crib. I my mom helped me put up a a like kind of like a little hospital area in the living room. So it was a bed that had feather pillows all the way around it, so that in case he moved or fell or anything that you know he wouldn't get hurt.

SPEAKER_00 24:00

Was he very mobile at the time or just more healing and just yeah, he was not super mobile.

SPEAKER_04 24:05

Yeah. He was nope, he wasn't sedated. No, okay, but he was just a chill kid. Like even when he would go to the doctor to have procedures done where they would normally have to sedate a child, they didn't have to, Luke. He would just roll with it. He didn't, you know, he's never been one to really cry with pain. Um he has a a really high pain tolerance to the point where it makes me nervous because he's gotten hurt and he didn't know he was hurt before. And um, unless you notice it, he's not gonna tell you he's hurt. So you have to be real careful with them.

SPEAKER_00 24:38

So he gets out of that season of his life, he goes into pre-K eventually in school. And how did that whole thing happen? So there had to be some champions along the way in the teacher world.

SPEAKER_04 24:51

Oh, yes. I mean, leading up to school, I it what I wanted to say about that is that the key to Luke going to school was early intervention. And that intervention started from the day he came home from the hospital. By whom? Anyone I could get involved. And I I started with what services were available to me free. You know, they were through GISD. There was a there's there are things available to you as a taxpayer that, you know, a lot of people probably don't realize. So they came out to our house and did an evaluation. And I was uh I, you know, I qualified to have help at GISD. I he was in occupational physical and speech therapy from the The ISD is in Genesis County in Flint.

SPEAKER_00 25:38

It's a it's just an incredible opportunity to to take care of people's not only just special needs, but also diverse needs. Would you agree with that? I would say intermedic school district, intermediate school district.

SPEAKER_04 25:49

Yep, and they were great, they were very kind, and um they uh he went to these programs, but me being me, I it it wasn't enough. I just felt like it wasn't enough for me. And it thank goodness it's there for those who need it, and that it's a it was almost like a supplement to what I wanted to do for him. So I I had good insurance, so I looked into private therapy as well. And so he would go to um therapy three to four times a week, and he would go to GISD one day. And the reason that I felt like it wasn't enough is because they're most of those are group therapies, so you're there with other kids. And each child has varying degrees of needs, and I did this a lot throughout Luke's life, and I don't know why, but I would get I'd feel guilty because I other kids needed more, and I felt like he was taking away from maybe what somebody else needed when I had the ability to do it privately. And so I would, you know, I he was in um, like I said, occupational, physical, and speech therapy from the time he was born through Hurley. I would go get up at six in the morning and take him before work, take him to daycare or to my mother, and then go off to work all day. And sometimes he would do a morning therapy and then evening therapy after work.

SPEAKER_00 27:18

You really have to call in the network to get this all to happen.

SPEAKER_04 27:22

Yeah, you do.

SPEAKER_00 27:22

Another obstacle that people have that they don't have that network or transportation.

SPEAKER_04 27:26

Or transportation. That is that is the key, I think, from beginning to adulthood. That's the missing piece to me is the transportation piece. What? I think in my that's just my no, tell me more. I I rem I like you said, so I have a village, and I was fortunate enough to have that. As time went on, though, like when he graduated high school, my mother passed away on the day before his 18th birthday, you know. So that portion where it always had that fallback from her was gone. Now he's entering the adult world and he's managed to graduate with a diploma, which kind of limits some of the resources available to him because of that diploma piece. So he then, like I struggled. I wanted him to get involved in some programs. I we were fortunate enough he was able to go to college, which is something we had not prepared for. I didn't even think that was going to be part of Luke's future. And then lo and behold, it was. But that piece of how are we gonna get you back and forth to school was not there. And I was surprised because we had done a lot of work with Michigan Rehabilitation Services, that that was not something that was available in the end, was the transportation piece.

SPEAKER_00 28:47

And if it had not been for your ability to provide it, then he wouldn't have had the progress that he's made so far.

SPEAKER_04 28:53

Correct. The opportunities get limited then immediately without that transportation piece. And I think I think that is probably one of the biggest things that I think we lack in in the county.

SPEAKER_00 29:03

That's what we do these shows to learn these kinds of things that these are just simple little fixes. You think that the brain surgery one, brain surgery two, uh was a big deal. You're talking about just getting somebody from point A to point B.

SPEAKER_01 29:14

Yeah. Yeah.

SPEAKER_00 29:15

And it can't be on public transportation or just a car. Some of these folks need like serious and unique types of transportation with appointments and distances no matter what. Um Luke graduated as a bobcat, Mama Mater.

SPEAKER_04 29:30

He did.

SPEAKER_00 29:31

2022 or 23?

SPEAKER_04 29:32

23.

SPEAKER_00 29:32

23.

SPEAKER_04 29:33

Yeah.

SPEAKER_00 29:34

What was it like to see him walk across the stage?

SPEAKER_04 29:36

I I I can barely talk about it. It was um just a day I never dreamed was gonna happen. And uh probably one of the greatest days of my life.

SPEAKER_00 29:46

How did Graham Blank treat you?

SPEAKER_04 29:48

Phenomenal. They really did. I I'm not saying it was easy, and I didn't always make friends along the way, getting him what he needed, but in the end, they came through. They really did. And I think the early days, the elementary piece of it was pretty challenging. Um why it was we reinvented the wheel every year. Every year. Luke was Luke was in this situation where he didn't fit in a box. He he didn't really fit in the autism box, even though he has a lot of uh autistic tendencies, should I say, you know, he he That's not his diagnosis. That's that's not his diagnosis. That was his diagnosis was something that they're not familiar with. Right. And his um cognitive abilities, I think, were maybe misread sometimes. Um he he kind of has done everything about two to three years later than he should. And so maybe it's sometimes when you're looking at state testing, whatever they all these little formulas they have to go through to decide where they're gonna put you, he might not have fit in a box. And I was told on more than one occasion, he doesn't fit in any box, we're not really sure what to do with them. So all his IEPs, he's labeled as otherwise health impaired. Oh and so, um, but they in terms of getting him what he needed, it was it was always a struggle. Every year it was something different. Um, I always advocated for the inclusive classroom because I always felt like it was better to have him be challenged and be, you know, kind of trying to live up to something than to go into a inclusive classroom that was he was kind of segregated with with just special needs kids that um maybe he would just get too comfortable.

SPEAKER_00 31:42

But you got your way.

SPEAKER_04 31:43

I did get my way, I did get my way in the end, but it wasn't always easy. Right every year it was different, every single year. He even went a year and a half where he had his own aid, and nobody else did.

SPEAKER_00 31:56

How would the other kids treat him?

SPEAKER_04 31:58

Fantastic. In his entire time at Grand Blanc, he was never bullied one time.

SPEAKER_00 32:03

Amen to that.

SPEAKER_04 32:04

Not once. And um, in fourth grade, they elected him to student counsel. And so it was it was, I really did. I I'm so fortunate that we were able to, I guess, have everything that Grand Blanc offered. Um, they I think they did a really great job of working with me, working through some of my anxieties. I'm sure I wasn't always an easy parent to deal with. Um, I tried to be kind and respectful, and and they did too. Um, they would come up with ideas that I thought were preposterous, and then it always seemed like just when I thought I had no way out, they would come in and change their mind and say, okay, we've thought this through. We're gonna, we're gonna do it this way instead.

SPEAKER_00 32:51

You just think about all those kids who don't have the resources that you just told us over this last half hour, you know. Yeah. Whether it's a mom like you or a support team or the healthcare or transportation or the school system, like all those barriers, just one after another after another. During this whole process, you still had Max.

SPEAKER_04 33:08

Still had Max. Still had Max who kind of um, you know, I've Max and I have come a long way, but I Max was my only child for four years. He was my everything, he was pretty spoiled, and then all of a sudden his whole world came to a screeching halt when Luke was born, and he had to grow up really quick. And my focus was on his brother a lot of his life, and so we overcame a lot. We got, you know, the teen years were rough, but in the end, I uh yeah, I think people don't realize how the other kids are impacted by having a sibling with special needs. I think we tend to forget about them as well.

SPEAKER_00 33:56

Max's a soldier. He's a soldier in the army as we speak, as we speak.

SPEAKER_04 34:01

He's always felt a duty to serve his whole life. He's he thinks every man should do that.

SPEAKER_00 34:07

What would you tell Max right now?

SPEAKER_04 34:09

Thank you for being the the greatest kid, the greatest big brother. Thank you for everything. He is he's he's a great human being.

SPEAKER_00 34:19

That's great.

SPEAKER_04 34:20

Yep.

SPEAKER_00 34:22

Uh Luke interviewed me.

SPEAKER_03 34:24

He did.

SPEAKER_00 34:24

He did he interviewed you on an impromptu podcast.

SPEAKER_03 34:28

He did.

SPEAKER_00 34:29

Tell us where Luke is right now, what he does that surprises you even to this day.

SPEAKER_04 34:33

Luke is uh enrolled at Mott Community College in the media production program. And so he takes a lot of media courses. Um he's taken a podcasting course, and he's had podcasts come up in several of his classes where like they'll have an assignment where they have to create a podcast. So right now he's in a news production course, and this past week they had to do a podcast. And um he was at his dad's house and the phone rang and he he called me and I answered. And the phone it said, uh, this call is being recorded. And I, you know, I didn't know if he was in jail or what was going on.

SPEAKER_03 35:11

And he said, Um, Mom, have you eat have you eaten dinner? I said, Yes. He's like, then you have plenty of time. I need you to be on my podcast. Oh my gosh. I had to stop what I was doing, sit down. And he's like, No, I need you to pretend it's not me you're talking to. I'm like, okay, what are we doing? He's like, Well, I I thought you needed some practice for next week.

SPEAKER_00 35:31

Um, for the show. We gotta get Luke on the show.

SPEAKER_04 35:34

Yeah, he said, um, so I said, Okay, what's our topic? And he said, being the parent of a neurodivergent child.

SPEAKER_00 35:41

Oh my gosh.

SPEAKER_04 35:43

And so I was like, Rock star. I was like, All right, and he said, Okay, now remember, you're not talking to me, Luke. You're just talking to anybody.

SPEAKER_03 35:51

I'm just an interviewer. And I was like, All right, all right. So this went on for 20 minutes, this interview.

SPEAKER_00 35:56

And he did it well.

SPEAKER_03 35:57

He did, he did really well. And so a week later, I said, just the other night, I said, Hey, how'd you do on that assignment? Did you get a grade? He he's like, Yeah, I got 100%. And I said, Did your teacher say anything? And he's and he just kind of gave me this funny look. And I said, What? And he said, He said, It sounds like you got a pretty awesome mom.

SPEAKER_00 36:16

Like you did it when I tell me. Come on, Luke.

SPEAKER_03 36:19

So yeah.

SPEAKER_00 36:20

What would you tell Luke right now?

SPEAKER_03 36:21

What would I tell Luke? Thank thank you to you.

SPEAKER_04 36:25

Thank you for being the kindest, most honest, moral person I've ever known in my life. For being the blessing that you are to our family.

SPEAKER_00 36:37

Could the state have done more to help you?

SPEAKER_04 36:40

Um me individually, probably not. I I I'm I mean, that's a loaded question. I'm sure we could always say that there's more that could be done. Um I think though, not everyone is me. And I think that there are a lot of things that could be done differently, you know, to help people who maybe don't have some of the resources that I had to give Luke some of the advantages that he had. I will say one thing that I'm surprised that has not taken off more is that there is a program called the Pivot Program. Are you familiar with it?

SPEAKER_01 37:18

Yeah.

SPEAKER_04 37:19

It is, and the last I knew, and this could have changed, but when Luke was in the program, there was only six schools, maybe even five in Genesee County that participated. And it is a program that for 11th and 12th graders gives them um work preparation. So they spend three days in the classroom learning um work skills and uh life skills and job readiness, and then two days they go to a job site and actually perform the job. Like a co-op. Like a kind of like a co-op, but for kids, you know, with disabilities, with challenges. And so the school has to participate. But so Michigan Rehabilitation Services runs it and they partner with New Horizon to provide the transportation that takes them back and forth to the program. And so Luke got involved in this program in his uh senior year. Yep. And he worked half the year at Pet Smart and then the second half at Genesis. Yeah. And he Which is the health club. Which is the health club.

SPEAKER_00 38:25

And he is diligent. I've seen him live.

SPEAKER_04 38:27

Yes. Well, and you know, they all lost their job when they graduated. That this is just a work study program. Well, he was really liking this job. And so I told him, Well, you've got to advocate for yourself. You're going, you're gonna have to go and talk to the manager and ask him what the possibility is that he would hire you. So he did last week of school. He went, talked to the manager, his guy's name was Keith, and told Keith, you know, I want to work here. And Keith said, All right, well, why don't you go ahead and get graduated? And he said, You um give me a call this summer, and you know, when I have an opening, we'll see what we can do. So Luke did. Luke called him in July, didn't hear anything back. Um, I think he called him again in August and didn't hear anything back. And in the meantime, he's applying for jobs everywhere. And Michigan Rehabilitation Services was helping him to some degree. Some of the things that they were um they had available wasn't really like in the areas that we were looking for, and it just wouldn't work with our work situation. And so he finally got a call in October from Genesis, and he had him come in, have an interview, had to go through the whole thing, and then they hired him.

SPEAKER_00 39:41

Another proud mom moment.

SPEAKER_04 39:42

Oh yeah, oh yeah, and then they hired him. But I truly believe had he not been in that program that um it's called Pivot. It's called Pivot, yep. And leading up to Pivot, in the prior years, there's one called WIOA.

SPEAKER_01 39:56

Okay.

SPEAKER_04 39:56

It I forget what WIOA stands for. It's W-I-O-H-A. It's a summer program that kind of does the same thing, and it's held at G I S D. Okay. And they teach them job readiness skills all summer long. And I I I don't understand why this is limited to just a few schools. Not for long. Yeah. It they everyone needs to be involved in it. Yeah, I think it led to some of the successes of Luke having a job today.

unknown 40:23

Yeah.

SPEAKER_00 40:24

Um, as we close out, Luke's doing a great job. I've met him, I've seen him. My message to you is you're a great mom.

SPEAKER_04 40:30

Oh, thank you.

SPEAKER_00 40:31

And uh for somebody who has been able to go through this and have such grace and produce such a good kid, uh, your testimony to what this kind of a challenge needs. What would you tell other moms that are just trying to figure it out?

SPEAKER_04 40:48

Don't give up hope. Don't and believe in yourself a little bit, you know, and until they're an adult and even after, you have to advocate for them and teach them to advocate for themselves as well. But don't give up hope. You have to believe there's answers and there's a better day around the corner. And um time changes everything. Over time, it might look bleak when they're younger, but as they mature, I think if they have the right intervention early on, that it it will get better. Yeah. Maturity helps a lot. It makes kind of it kind of eases some of your anxiety and concerns.

SPEAKER_00 41:32

Wow. We always like to end our show on a little bit more of a personal note about you personally. So thank you for that. I know it takes a lot of courage and bravery to go back to those memories and those days. Nobody can relive it like you and uh the support team that you have. But I'm gonna change the personal questions here just a little bit that we normally do for other questions. Okay. If there's one health professional out there that you want to thank personally, who would it be?

SPEAKER_04 41:56

Who I would say Dr. Seude.

SPEAKER_00 41:59

That's for you.

SPEAKER_04 42:01

Yeah.

SPEAKER_00 42:01

If there's a teacher out there in his entire education career that you want to thank personally, who would it be?

SPEAKER_04 42:07

Taylor Vogel Vogelsberg, yes, from Graham Blake High School. She believed in Luke in a way that he had great teachers through the years, don't get me wrong, but she believed in him in ways that nobody else did. She saw something immediately, and she's the one, she's the reason he's going to college today. She took him to Mott on the tour, and he brought home the day. I can still see the day he brought home the application to apply for Mott. And he's like, I'm doing this. I I'm I I want to do this. Mom, they have a disability program. I can go in and advocate for what accommodations I need, and the rest was history, and that's because of her.

SPEAKER_00 42:48

If there's a friend that has always been by your side, who would that be during this process?

SPEAKER_04 42:53

Oh, so many. My best friend, she passed away about seven years ago. But we grew up together since the time we were five. She was there through all of it. She always used to say that if you're having a bad day, go spend it, go spend an hour with Luke and it'll turn around.

SPEAKER_00 43:09

And what's her name?

SPEAKER_04 43:10

Tracy.

SPEAKER_00 43:12

If there's a family member that was by your side, I think I know the answer to this question. Who would that be?

unknown 43:18

Yeah.

SPEAKER_00 43:18

What's her name?

SPEAKER_02 43:19

Sarah.

SPEAKER_00 43:21

Sarah, what's her last name?

SPEAKER_02 43:22

Fry.

SPEAKER_00 43:23

Sarah Frye.

SPEAKER_02 43:24

Yep.

SPEAKER_00 43:25

This show's for you, Sarah, for all your work. It's for great moms out there like you. Thanks for tuning in to another episode of the Working Class Podcast. You're a hero.

SPEAKER_04 43:34

Thank you.