020 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia a Rare Neurological Disorder.

Transcript:

Dad To Dad 20 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia a Rare Neurological Disorder.

Tom Couch: This is the Special Fathers Network podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process. New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support or if you’re a dad who’d like to offer support, go to 21stcenturydads.org that’s 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Meet Gene Andrasco.

Gene Andrasco: With special needs kids you have to get help and you have to get it early.

Tom Couch: Gene and his wife Kelly are the proud parents of two children, 18 year old Ryan and 17 year old Kylie who’s been diagnosed with alternating hemiplegia of childhood or AHC.

Gene Andrasco: Hemiplegia childhood is a very rare disorder. There’s only, there’s less than a thousand cases diagnosed worldwide.

Tom Couch: We’ll hear the  family story, how they’ve dealt with Kylie’s rare neurological disorder and how they’ve worked to try to help other people who have the same disorder and maybe even find a cure.

Gene Andrasco: Since 2010 we had over $2 million of research at a variety of institutions.

Tom Couch: That’s all on this edition of the Special Fathers Network podcast. We kind of joked about earlier, you know, you’re a guy, you need help. You have to admit it early that you can’t do it all. So here’s David Hirsch’s conversation with special father Gene Andrasco

David Hirsch: I’m thrilled to be talking today with my friend Gene Andrasco of Lake circle, Illinois, a father of two and vice president at the marketing store worldwide. Jean, thank you for taking the time to do a podcast  interview for theSspecial Father’s Network.

Gene Andrasco: Thank you, Dave, for taking the time.

David Hirsch: You and your wife Kelly had been married for 24 years and of the proud parents of Ryan 18 and Kylie, who’s 17 who was diagnosed with alternating hemiplegia of childhood or AHC, which is an extremely rare neurological disorder.

So let’s start with some background. Tell me where you grew up. Tell me something about your family and siblings.

Gene Andrasco: Uh, so I grew up on the South side of Chicago in McGuffey wood neighborhood, and I am one of 10 children. 10 yeah. Where are you in the birth order number nine. So I’m second youngest. Oh my gosh.

David Hirsch: So the age range

Gene Andrasco: is 16 years. I grew up in a, a regular three-step branch house, kind of stereotypical Chicago print home. My parents made it work.

David Hirsch: All I can think of is a lot of chaos. Like the bathrooms, like six sisters. They’re like, be no chance to use the bathroom.

Gene Andrasco: Yeah. It was a Zoe’s activity.

David Hirsch: So you come from a large family and what was that like if you had to describe it?

Gene Andrasco: Uh, it was, you know, he was great because there’s always somebody around. But sometimes it wasn’t good because there was always somebody around. It’s hard to get or to get a quiet moment, but you know, it was good. You know, we all pretty much got along had you normal tussles with brothers and stuff like that.

But me being at the younger end, I got to look up to the older siblings, um, sometimes quietly see what they’re doing and getting in trouble for it and try to mold my own behavior as I grow up type of thing. But, you know, it was good.

David Hirsch: Excellent. So how would you describe the relationship with your dad?

Gene Andrasco: It’s a good relationship with my dad, and my dad was a very old fashioned, mostly Irish, a little bit German, no nonsense, little bit strict Catholic father.

David Hirsch: So you have to be crazy.

Gene Andrasco: But no, we had a good relationship. He was at hardworking person. He worked for Ford for 38 years. But you know, I think overall it’s a good relationship.

David Hirsch: Excellent. So looking back on your. Childhood, and then maybe subsequent, uh, was there anything that your dad said or did that really resonate with you as far as a lesson or lessons that he shared with, you?

Gene Andrasco: You Know, coming from a big family, you didn’t have a lot of money. He worked hard to provide for us any jobs that had to be done around the house.

We had to do ourselves. You know, with all those people in a small house, it was always, um. Drains ahead to be unplugged, coming work to be done and painting and stuff like that. And I helped out and we’re kind of a tough job, you know, taking apart the same, you know, fixing it and stuff. And he would always say it, and I was doing decent in school and he’d always say to me, if you keep studying, you won’t have to do this for a living.

So that’s always resonated. Okay.

David Hirsch: So if you apply yourself intellectually, yeah, we’ll be able to do a white collar job, if you will, versus maybe a blue collar job. Nothing wrong with blue collar jobs

Gene Andrasco: because then when you get older, it’s a lot harder to climb under a sink. And he goes, that’s why you’re doing it.

And not me. Because it’s easier for you as a young guy. Absolutely. That was something that I’ve always taken away from anything else, the discipline that, you know, the self discipline that he had, you know, he was just, you know, very orderly and that I’m not as old as him maybe. Um. But that is something I took away as well.

David Hirsch: Well, you have seven fewer kids to

Gene Andrasco: eight year kids. Yeah, I got to he at 10 Oh yeah,

David Hirsch: that’s right. I’m sorry. Yeah,

Gene Andrasco: good point. Yeah, I took that away too.

David Hirsch: Go. Okay. So where did you go to school?

Gene Andrasco: High school. College. S a I went to rice high school, so I went to 12 years of Catholic school. We lived to a half a block from queen of martyrs grammar school.

I’d walk to school and then less than a mile from brother rice high school. I walked there and then I went to university of Illinois in Champaign. I was the first one in my family to go away for college, and college is always, we had to go to town, but my parents could not afford it. They did well and I wanted to get into accounting.

And you have, I had a great accounting school. I applied for the Chuck Evans scholarship when I was in high school. And, uh, I did not get the first application. Interestingly, it was because I didn’t have financial need. My father was very old fashioned and he did not have any debt. He didn’t have any credit cards, nothing.

So he, if he didn’t have money in his pocket, but we didn’t buy it, type of thing, that works great from a day to day perspective. But when I applied for a scholarship, like I know you got plenty of assets, you have a house, so I’m

David Hirsch: not in your favor by his

Gene Andrasco: school. Exactly. Exactly. If he couldn’t pay for all of us to go to college, but I decided that I still want to do it.

I was going to take out loans, let’s get small scholarships. And then we applied for the check out on scholarship and I did. And that was fortunate to get it my second time around. After my freshman year of college, I got the scholarship. That’s wonderful.

David Hirsch: So are you on Evans scholar then?

Gene Andrasco: Yes, I am.

David Hirsch: Did you live in the Evans scholar house?

Gene Andrasco: Oh my God. Three years and my last few years there. Okay.

David Hirsch: Well that’s one of the things we had in common. We both went here. We’re still annoying. And that was one of the most formative experiences was being part of a fraternity. Well, that’s fabulous. Thanks for sharing. So, uh, when you graduated, you had an accounting degree, and, uh, tell me briefly about your career.

Gene Andrasco: So I didn’t take the traditional accounting career route. I didn’t go into public accounting for a seven into corporate accounting. So I worked for Amoco oil here in Chicago and did a variety of different basic accounting jobs. After about a year and a half, I did take a project where I moved down to Tallahassee, Florida.

They had acquired a, um, a guest station chain that had a quick Mart and they were trying to understand how to run a quick service Mark. That was a great learning opportunity for me personally. It was, uh, it was, um, my, my wife has. Very strong person. She thought with me being away for awhile, uh, I was offered the position two days after we got engaged.

Oh my God. So I couldn’t accept it without talking to her, but she said, yeah, you know, she knew somebody who worked at Amoco at the time and said, if you got offered that type of role, that’s a good thing. It’s going to be nine months. And then she planned a lot of the wedding stuff, which was good for me.

She would bring me in when she needed to, but I told her. I know this is going to be hard being away. I go, but I’m going to save a lot of money doing this and I’m going to get a lot of airline miles. And I felt we’ll fly to Hawaii for that. Anyway. Well, they were going to tell what happened. Yeah,

David Hirsch: I’ve got some good news, honey, and I’ve got some bad news when you go to

Gene Andrasco: Hawaii.

David Hirsch: I’m glad it worked out. And uh, I worked

Gene Andrasco: there for about four years and then I moved over to McDonald’s and their headquarters in Oakbrook. Um, and while I was at McDonald’s, I got my MBA from DePaul. And then. Instead of looking at other opportunities and the balance really didn’t offer too much as far as MBA positions.

Um, and then I found a position at Kraft where I was taking on a lot more responsibility, which is what I was looking for. And I did a variety of roles and craft. I was there for 15 years. A couple of years ago, Kraft was bought out by private equity, Heinz and private equity, and I took a package and left the company at that time.

And then reconnected with somebody I’d worked with in the past who’s at a company called the marketing store. I took a wall there and the head of finance for the happy meal business where a supplier for McDonald’s, we supply how they’re happy now twice.

David Hirsch: And you’ve mentioned previous conversation on how many toys is that annually?

Gene Andrasco: Yeah. Last year it was 1.7 billion toys were delivered to McDonald’s. That’s insane. The largest supplier of toys in the world. Small, but there’s a lot of,

David Hirsch: there’s a lot of, yeah. Okay. Well thanks for sharing. That’s very interesting. So let’s talk about your connection to the special needs community on a personal level and then beyond.

So before Kylie was born, did you or Kelly have any connection to the special needs community?

Gene Andrasco: My wife had his cousin who had spinal bifida, but you know, we weren’t involved in any organizations or anything. And she was in a wheelchair. I think early in her life she was walking right. She wound up in a wheelchair.

She actually passed away before my daughter was born, so she was in her twenties when she passed away. So we knew, you know, some difficulties of having a special needs child. But as we. Learned since then, we didn’t really know a lot, but we saw, you know what it was like to have a special needs in the family more from a distance, right?

Yeah. More from a distance.

David Hirsch: What was your first reaction upon learning of Carly’s diagnosis?

Gene Andrasco: Uh, it was mixed because she went. 18 months without being properly diagnosed, and we weren’t comfortable with her original diagnosis of having epilepsy,

David Hirsch: so she started having seizures or

Gene Andrasco: something. She started having these attacks when she was like three months old and in a child and a small infant like that, uh, alternating hemiplegia event looks very much like a seizure.

And so it’s hard to die. And at the time there was no test for it. It was just a visual, what’s happening with the child and what bucket does it fit in?

David Hirsch: We just, for my own benefit described to me what, what was it that you were observing that you knew that something wasn’t right or

Gene Andrasco: she would like her one arm would get stiff and stick straight out and her head would look that way and her eyes would pull and sometimes she would shake and like she couldn’t.

Move her head, couldn’t move her arm and we couldn’t move it either. It was like stiff and she was shaking. And so the stiffness and shaking is very similar to a seizure, right? A child that size did a series of medications all based on seizures. You know, it didn’t stop them, and there was sometimes it should be having these events for four days in a row.

When you talking about a child under a year old. They can’t move anyway, and you’ve got to carry them, and they’re just uncomfortable and a lot of crying. And

David Hirsch: it sounds like it’d be really scary to,

Gene Andrasco: yeah, because we don’t know what it is. Right. Really, my wife really pushed on it. She said she doesn’t have seizures, it’s gotta be something else.

And so just started looking on the internet, know she found a site that had. Rare diseases at the whole list of them, and it was like an encyclopedia of rare diseases. Quite quickly, she typed in some criteria and one of the things was her eyes and the eyes would pull to one side and they would bounce a little bit.

It’s called an ms. Dot. Ms sadness and the eyes, one of the disorders was alternating hemiplegia and they came up. So we read about it and present it to our doctors. Hey. Could it be this? And, uh, we were at children’s Memorial now Laurie, um, and the great doctor, and he had only seen one patient that had this disorder.

And he said, no, I don’t think it is because the patient he saw needed to be hospitalized for a week. Every time they had an attack, like every month, this child was in the hospital for a week. And he goes, his daughter doesn’t look like that. And he goes, I’m not totally dismissing it, but let’s keep looking at different things.

And then a couple months later she was in for a test. She was all hooked up to an EEG machine, and fortunately for us, she started to have an alternating hemiplegia attack while she was there. While she was there while she was hooked up and the doctor was excited, he’s like, right here we go. Let’s take a look at this.

And he goes, I can see that something is going on with her. But nothing is reading on the computer. It’s not a seizure. And he goes, so you might be right. That was very revealing. Yeah. Yeah. It was just by chance that he happened to be in getting tested, and so he sent us to a specialist at Cleveland clinic who had experienced with alternating hemiplegia, went through our history.

We had some videos of our daughter in an attack, and they reviewed all of that and said, yeah, this is a classic case of alternating hemiplegia. But they told a series of tests for it, but. It looks like this. We want to refer you to adapter university Chicago. He’s been studying in the dr silver, even studying this disorder since the late eighties early nineties he’s one of the original people doing it, and we’re very fortunate to have him in Chicago.

And we were in Chicago too, and so they started assigning treatment for alternating any policeman.

David Hirsch: Wow. What a coincidence. His diagnosis, well, she was having an attack and then going to Cleveland and finding somebody. In Chicago. Okay. Yeah, so that’s wonderful. So what is a H C and how is it typically diagnosed and who does it affect?

Gene Andrasco: Yeah, so I’ll tell you how many plead your childhood is a dementia. It’s a very rare disorder. There’s only less than a thousand cases diagnosed worldwide. It’s transient attacks of hemiplegia, so it’s a paralysis on one side of the body. It could be on both sides of the potty, but usually it’s on one side and it could shift from one side to the other.

These attacks could be simple as simple as an arm stops working and my daughter’s arm will curl up and we joke and they call it a chicken wing cause it’s tucked up like a wing or her leg will come up and she’ll stand on one foot looking like a. We call our Flamingo. Um, cause it just bends and she stands at, well not under the counter or it could be like a full body where she can’t move at all.

She can’t talk, can’t swallow. Those are a little more scary obviously cause they’re more severe. There’s also what’s called dystonia or dystonic attacks. And that’s when the muscles become extremely stiff. So instead of her legs bending up. It’ll be straight out. And it’s, I liken it to, if you get a severe cramp in your calf or in your thigh, my daughter is in pain that she, you know, and I’ve noticed some other kids, you know, in a lot of pain screaming and I, I go to the side of her leg and it’s like a steel rod.

It is just some messes are all doubts. And that’s very, um, I don’t think is a very sore for her, but it’s also physically taxing. So her muscles are flexed and she’ll be that way with her leg. And could your arm too?

David Hirsch: No long. Would one of those situations,

Gene Andrasco: um, it could go on and off for a couple hours, but we do have a rescue medicine that we can give her.

That it’s kind of muscle relaxes. And that reduces that a little bit. So we give her a couple and they’re good cause they dissolve so they don’t have to swallow. So this case sometimes. Yeah. So there’s times where she can’t drink, her mouth won’t work. But if you put this pill on her tongue, it’ll dissolve and we’ll give her a one or two depending on how severe it is.

Then she’ll be able to at least sit up. She might not be able to walk still, but she’ll help relieve the tenseness in her muscles.

David Hirsch: So this started when she was an infant, when she was two months old. And if you had to say on a weekly, monthly, annual basis how many of these attacks as she had fought him off over the years.

Gene Andrasco: She has him about, let’s say six to eight times a month. Um, so pretty regularly. Um, you know, we are fortunate that she’s on the milder end of the spectrum. Um, when she’s not having episode, she’s walking around, she can, you know, run, you can tell she’s has a physical disability, but she can still get around on her own.

She can get herself dressed for the most part. And there are some kids with this disorder who are in wheelchairs and don’t have the ability to talk as well. And so it’s kind of a spectrum disorder, so it affects kids, different kids differently.

David Hirsch: You just said there, there’s only about a thousand cases that been diagnosed.

Is that a us phenomenon or is

Gene Andrasco: it really it’s worldwide. The majority of them are in the U S and some in Europe as well. I think it’s more so because it’s a newer diagnosis and in other parts of the world that may not have as developed medical assistance that we do. It’s not as, no does. Even people in the United States that hadn’t met at our foundation meetings were.

They’d gone 11 years without a diagnosis because they had lived in a rural part of the country and they went to doctors and they didn’t know about it, and there was not any even writings about it. They couldn’t even look it up for the most part. So there are a lot of more cases, most likely out there to just not diagnosed.

We were fortunate in 2012 they found a gene. Malfunction that causes a C and R foundation helped fund as part of that research. I’m very proud to be associated with that. So there is now a test that they give kids once they present teachers that look like a, uh, uh, an AAC episode, they can give them a blood test and we are finding more and more cases that way.

You know, they do a genetic test and they know exactly what they’re looking for. Excellent. They can find it. So

David Hirsch: What type of advice did you get early on when this was first diagnosed?

Gene Andrasco: Um, we got more medical advice than anything for the first couple of years. He’s going to doctors and there was only one medicine that’s my daughter takes, that helps AC.

It doesn’t cure it, it doesn’t prevent it, but it makes it episodes less frequent and less severe. The medicine is not available in the United States, unfortunately. So we get it from Canada. Some people get it from India or The Bahamas. It is a prescribed medicine for migraines in other parts of the world.

Uh, we have tried to get it accepted in the United States, but the testing protocol for the FDA is very strict and. In order to get it tested. They need what they call a double blind study. So they need to have some kids on it and some on a placebo. And we’re not willing to have any family take their kid off the medicine because some families have done that because they’re like, Oh, we’re not sure if this is working right.

And sometimes the kids have had really severe attacks that could have debilitating effects. And so what can, we can’t, as an organization do a test that puts some children in jeopardy.

David Hirsch: Wow. Well, thank you for sharing. That’s enlightening at the very least over some of the more important decisions that you and Kelly have made raising two children, including Kylie with special needs.

Gene Andrasco: Um, so one of the biggest decisions was my wife stays at home. We had to have one of us stay at home because early on, the number of doctor visits, and you know, on a specialist in therapists, there’s no way. You didn’t think there’s any way with both of us working with him, we’d be able to manage that.

That was one day one, and then getting involved in the alternating, having plead your childhood foundation and getting to know other parents has really been helpful to understand that when I’m alone, what we’re facing is not unique. So it helped us therapeutically.

David Hirsch: Excellent. So what are some of the biggest challenges that you’ve encountered.

Gene Andrasco: Well with my daughter and what I found with a lot of children with special needs is there are the medical problems that they have that caused them, you know, disruptions in the family. You can’t just say, okay, we’re going to get up and go someplace. It’s not that easy. But there’s also the emotional side.

So my daughter has a lot of behavior issues, which is very common with children with special needs. You know, it could be due to frustration of their situation, but also there’s a, a chemical component in the brain as well. Her brain is not as developed as a 17 year old. Her reactions are different. The behavior is really the biggest issue.

For the last several years, we’ve been working with some great therapist. We’ve made a lot of progress, and she goes to a special therapeutic day school, which is dedicated to special needs kids and particularly some with behavior issues. And they’ve done some different therapies as well, and it’s taken a long time.

And I thought, Oh, when it starts in therapy, six months later, you know, she’ll be. Doing everything fine. But it does take years. But we have made a lot of progress. Excellent.

David Hirsch: So is that in lieu of going to public school?

Gene Andrasco: Yeah, she started out in the, um, special needs program in the public school, but they couldn’t, it was a mutual agreement between us and the school district that they couldn’t.

Give her what she needed. And so we, we found another school. Um, it’s about a 35, 40 minute bus ride for her, and she’s on the bus by herself. It’s a dedicated bus, uh, and she has an aide with her on the bus, but it has been really good for her. She’s been there for six years, I think now. Um, so over that time, you know, there’s been some bumps, but you know, she’s, she’s made a lot of improvements there.

David Hirsch: Excellent.

So you had mentioned, I think in a prior conversation that the seizures are not always present when AHC is diagnosed. So talk a little bit more about that because it sounds like Kylie has had quite a few seizures, six to eight a month. So shed some light on that.

Gene Andrasco: Yeah. So she has two things.

Children with AAC, about 50% of the cases, uh, develop seizures as well as the ADC episodes that they have. So she has a C events, you know, six to eight times a month. She also has seizures, which developed when she was about 11 years old. And. We’d gotten the seizures somewhat under control. We’re very fortunate that she’s only had them every 18 to 20 months.

In the beginning, she was having them regularly, probably every month for about a 10 month period until we got the right level of medication and the right medicine. Now, when she has a seizure every 18 to 20 months, but they’re severe, so she stops breathing. The seizure actually won’t stop, and so they have to give her a lot of different medications to get it to stop.

She’s hospital. She’s hospitalized. Yeah. Well, we have, we have a medicine with us at all time. One of the reasons she has an aide on the bus and she has an aid in school and they have the medicine with them. They had, she had to get a rectal shot of this medicine to slow the brain down. The shot doesn’t stop it, but it slows it down.

Then you call an ambulance and then they administer other medicines, and she’s actually wound up in intensive care three times on an intubation machine, so she’s not breathing on her own. She reading for her, she’s on that for about six hours, six to eight hours until she can come back and breathe. So

David Hirsch: that’s gotta be frightening.

Gene Andrasco: Yeah. Yeah. The first couple were very frightening. But then we took notes and now we go in and tell them. The paramedics come, we’re like, this is what’s going on and this is what needs to happen, and we’d go to the emergency room, whatever. Closest one I said, we tell them the same thing. It’s almost like knowing as much as the doctor, just from experience and each time it’s happened, she’s had to be transferred either to Lurie children’s or to.

University, Chicago children’s, because they have the the right expertise to handle it.

David Hirsch: Wow, that’s incredible. So what impact has Kyla situation had on Ryan, your older child and the rest of the family

Gene Andrasco: for that matter? Yeah, so it sounds, it’s kind of helped and hurt a little bit with Ryan, so I think he’s more, he’s very compassionate for the most part with her.

He’s done some good things outside of the home. You know, getting involved in a church group and being a youth leader in the church organization. But I think some of that stems from him seeing how she struggled and being able to help her. But it’s also a challenge. You know, you’ve been at a tournament with him.

He played lacrosse in high school, and that was one of the times my daughter had a seizure and ambulance and a comment. Sounds like it

David Hirsch: would be very upsetting to see a sister we all the way and see you guys. Wow. Um, it sounds like it’s been very challenging for both you and for Kelly cause it’s so unpredictable.

Yeah. It just happens, you know. Imagine you’ve been maybe out to dinner or different situations that, you know, you can probably count each one of those times that the ambulance had to show up like it was yesterday. Yeah. And you know, those aren’t the best memories to be bringing to mind, so. Right,

Gene Andrasco: right.

But you know, back then, you know, behavior that that’s been the main thing the last couple of years per regular episodes of paralysis. We can work through those and she knows how to work through them as well, but when she gets. You know, her behavior, she becomes aggressive

David Hirsch: verbally or physically?

Gene Andrasco: Both.

Both. Um, it’s been very challenging. We’ve had to really like take baby steps to reshape her way of thinking. And we probably should’ve started earlier than we did. We didn’t recognize, you know, we saw, no, sir. Misbehaving and we probably didn’t address it quick enough and we thought we could handle it type of thing.

And it’s really unique how you have to handle it. Yeah. You have to break things down into the simplest, you know, with my son, he would do something wrong and he would get the consequence. And we explained why he can’t do that. And for the most part it wouldn’t happen again or you know, to go equipment.

But with my daughter, it was like she almost didn’t number. The consequence. And so she had to have more, you know, consistent consequences. And so the therapist work was great. And she said, you know, when she does something, and it was like rules, like certain things. She was physically aggressive, verbally aggressive.

And there’s a couple of things. We put a blue sticky note on the side of the cabinet and mean she does a chore because she disrupted the family. She has to help the family. There was a time for awhile that I would come home from work five days a week and there’d be a sticky and I would have to supervise her doing a chore.

And she wasn’t always cooperative doing the chore because she knew why she got it. And sometimes that led to another chore, you know? I

David Hirsch: remember. They’re teenagers too.

Gene Andrasco: Yeah, yeah, I know. So it’s a combination of, exactly. It’s not

David Hirsch: necessarily the disease or what’s going on. In her particular situation, but when you’re dealing with the adolescent yet sort of pushback and you know, what, do you know?

You’re my parents.

Gene Andrasco: Yeah. But yeah, they know it’s gone down a lot too, you know, a couple times a month. But it’s still, when it happens, I don’t know if it affects us more now because it doesn’t happen as often. That’s a where it’s such a good streak, but when she gets that way, you know, it’s. It’s very stressful from it for the families, particularly in my wife and I, and we try and both to, you know, calm the situation down and it, sometimes it turns into us turning on each other and helping each other, which is

David Hirsch: typical.

It puts a lot of stress on the family.

Gene Andrasco: Yeah, definitely.

David Hirsch: So just from an educational perspective, she’s high school age now. She’s in the special learning program that you’re talking about. What do you anticipate will occur once she’s done with that at age 21 or 22

Gene Andrasco: yeah, so she can stay in the program until she’s 22 she’s going to have to get some tutor training, but we’ve told her that she has to get her behavior in line in order to do.

That kind of thing. So she’s got two challenges. One is she had her behavior in line, and two is she could have a seizure at any time, so she has to have somebody with her that knows how to administer. She’s expressed that she wants to be a helper at daycare. She likes babies. I’m not sure if she’ll be able to do that, depending on how things work for her.

I know there’s a lot of organizations that provide. Jobs for people with special needs. People see somebody with special needs, they kind of look longer than a normal book, and she, that affects, or

David Hirsch: sometimes she’s very aware

Gene Andrasco: of herself. Yeah. Could get her ad. So it’s probably best that she had a role that wasn’t necessarily public facing all the time.

I know there’s like small assembly and. Manufacturing and sorting type of jobs.

David Hirsch: The one thing for sure is that the situation is going to evolve, right? And you can’t really anticipate, right. You know where she’s going to be next year, let alone three or five years from now, and there are more and more programs.

I want to Judson college, there’s one up in new Grove, Wisconsin, which is Shepard’s college where they accommodate or cater to individuals who. Are in similar situations and each one of them is a little bit different. So I’m hoping that the options that will be available four years down the road, or five years down the road, you know, will, there’ll be just a, just the right fit.

Yeah. So let’s talk about supporting organizations. I know that you mentioned Shriner’s hospital was one of them. What’s your experience been with Shriners?

Gene Andrasco: Yeah, so we have a dr silver who’s we’ve been with since my daughter was two, one of the initial researchers on alternating hemiplegia. He’s at university of Chicago when he met him and now he’s at trainers.

He has a lot of knowledge on the disorder. He’s really, really good with our daughter tonight. But I’d actually likes going to see him. He’s an older doctor and so she calls him Papa. I think grandpa, um, she gets along really well with him. He’s given us really good advice. You know, he helps us, gets us a prescription for a medication that she needs, and it’s helped us get involved in other services and, you know, pointed out different things.

So those two hospitals have been important. Lurie children’s hospital. We’ve been there several times with my daughter. They have a very good. Pediatric intensive care unit. I mean, they have people sitting in the rooms overnight with the kids. You know, we stay overnight and you know, if they say, you know, if you want to have a break, go to the bathroom, get a cup of coffee, we’ll sit in here and we’ll call you.

If something happens. All of their services are really good. That’s a great hospital. Um, and then Northwestern university and Vanderbilt university are two universities that are doing research for us right now. To help find the cure for this sorter and Harvard university as well that we’re working with and Duke.

So we’ve got some universities doing some research. Over 80% of the kids that have this disorder have this gene malfunction. There’s still some kids that are not sure, so they still looking for that, but now that they have a gene to focus on, they’re looking at how to, if there’s a medicine that can do it, is there a gene therapy that could repair it?

But all that stuff takes time and money.

David Hirsch: You also mentioned Clearbrook here. Now, what role has that played in your field?

Gene Andrasco: So for us, we’ve been utilizing this resources at Clearbrook to get, so respite care in the home. So we have an aide come over a couple of days a week after school to work with my daughter.

It gives my wife a break, but she’s not, the person that comes over isn’t just a babysitter. So she has. Goals that she works on with my daughter and my daughter is 17, and she doesn’t know how to tie her shoes all the way. So that’s a continual goal. She doesn’t understand how to count money real well or tell time on a regular hand clock.

And there’s other things that they have a checklist of goals that they work on. My daughter, NRA make her lunch for the next day. My daughter does most of the work now, which is great. She has been taking on that responsibility. She goes up and gets, um. For close out for the next day. My daughter’s very, um, very structured.

Uh, I know a lot of structure. Yeah. Yeah. It has to be structured. Uh, other kids with special needs that I’ve met are very much the same way. It’s almost like an OCD level

David Hirsch: structure.

Gene Andrasco: Um, I think I’m like that. Yeah. Some way

David Hirsch: for myself and

Gene Andrasco: my daughters to the point where when she picks out her clothes to the next day, she lays it out on the floor in her closet.

In the order that it’s going to go on her body. It’s laid out like the pants are down here, the shirts up here and it’s set up, and then her shoes are in a certain spot or backpacks in a certain spot. So she likes order. And so part of the thing with the third person coming over is they get all that organized before dinner, so she gets all her stuff and she is more relaxed, but she knows that her.

Dataset for the next day. Yeah.

David Hirsch: One less thing to worry about.

Gene Andrasco: Right, right. But clear book’s been great. They also have a therapist come over once a week, kind of a behavior therapist and just talk to my daughter and does some art projects with there. But while they’re doing their projects, they’re talking about school, about home, about, you know, just talking about things.

Right, right. We’ve talked about the future with them. You know, what our options long term, especially when the child turns 18 in certain. You know, laws that change and you know, they’ve helped us, you know, get set up with financial experts and lawyers and stuff. They have those services, you know, they can help you to get in touch with the right people, to help you get the services that your adult child with special needs can get from the state or the federal gov.

Right.

David Hirsch: I imagine not just knowing as many. Families with special needs children, as I know, many of which are older children than yours, but the dynamics are going to change a little bit. When Ryan goes off to school

Gene Andrasco: and he left, he’s in school right now. He just finished his freshman year at Wisconsin, so he lived down in the home.

Uh, and that was different. My daughter was a little lost for the first couple of weeks, you know. What we Skyped with him, which is great. And you know, he picked up his laptop and showed her his room and said hi to the roommate and kind of got her comfortable with that. And then. She keeps busy with her routine, so she’s not obsessively thinking about him when he’s gone.

But you know, when he came home for Christmas, it was great. And then we went back. She’s like, Oh, I want him back. You know? She’s like, you have to quit school and stay home with me. He’s like, no, I can’t do that.

David Hirsch: So did you ever go visit him?

Gene Andrasco: Yeah, we went up there. There was a family weekend and we took her up there for a weekend and did a couple of things.

She walked on campus with us and. It was good. That was good.

David Hirsch: Yeah. Well, what I’ve learned is that, uh, as, uh, the older siblings, maybe typical siblings transition out of the nest coming and going while they’re in college, gives the younger siblings, regardless of what their situation as sort of a preview, and they want to be like their older siblings, they want to do all the same things and you don’t want to put any limits out there.

Yeah. You have to be realistic, but you don’t want to say, well, you can’t do that.

Gene Andrasco: Yeah. Yeah. Is there any, is one difficult thing she asks about? She’s like, I want to drive a car and 17 of them I’m not driving and how come I can’t go to college? Can I go to college with him? And we had it tactfully tell her, because you know, driving lies, you might have an episode and not be able to use your foot and you won’t be able to steer or stop the car.

So it’s not a good idea for you. I know, I know you’re 17 and you want a car and you want to be a driver’s license, but we are going to get her state ID that CD’s is a lot like a driver’s license thing. She’ll be very proud that she has that she could show people.

David Hirsch: Absolutely. Yeah. Well, you just want to, you know, fill in all the gaps and do everything they can.

Yeah. Part of it is just, you know, moving along and keeping up with, you know, people, they’re your peers or your siblings. So what role has spirituality played in your life?

Gene Andrasco: For me, I went to 12 years of Catholic school, but I, I haven’t really practiced religion much after that. My son is a lot better than I am that way.

He got involved in the youth program to the church, went on a couple of retreats and actually was a retreat leader, a student leader when he was a senior.

David Hirsch: That’s great. Well, it sounds like he’s a very well rounded you man.

Gene Andrasco: So far, so good again. That’s awesome.

David Hirsch: So let’s talk a little bit about the AHC foundation, which is located in Southfield, Michigan.

How did you learn about the foundation and what led you and Kelly to take on

Gene Andrasco: leadership roles there? We learned about the foundation back in 2005. I got her was, um, four years old. She had been diagnosed for two years and. They had a website and my wife found out that they were having a meeting with doctors and other families out in Boston, and so we decided to.

Go and attend and meet other families and meet the doctors and see kind of what was out there. And they were actually doing some genetic testing at that time. So they took blood samples from everybody in the family. There was a bunch of doctor visits that month that they coordinated. It was all free.

The doctors just did it as part of their research. They were getting a family history there, you know, telling our story, getting medical samples. It was, it was great. And then we met other families there. And then, um. The next year we found there was another family in the Chicago area, so that had a daughter with the disorder and that families and organized a walk-a-thon.

And it asks us if we, if our family would like to join. And so we did. And we invited our families. And it was a small who’s just like family and a couple of friends. And we raised the wall called a, it was just called the ACF Chicago walk. And we need, you know, a couple of thousand dollars. It wasn’t a huge rock, it was lot of family things.

And a couple of. Company donations and stuff, and everybody felt really good after that. I said, you know, we can do this again next year and hopefully, you know, make it bigger and that type of thing. And so we started that in 2007 it was our first combined one, and we’ve been doing it ever since. And. Uh, we’ve raised well over $300,000 over those years for the foundation.

That’s how we got started. You know, somebody else started a walk and we liked it. And then, you know, we’ve been to help out since I have a financial background. I said, you know, I can collect the money and I can get it to the foundation and I’ll give you guys reports on what we collected, what our expenses and all that stuff.

I did that for a couple of years and the president of the foundation said, you know. He was going to retire in a couple of years. His son was older, rich George was his name. He was getting older and adult son with HC, and he had his personal accountant helping out doing the books. He’s like, well, we need more people, more families to help out your book.

Would you be willing to, do you know that to be president? Or? I said, well, with my job and everything, I didn’t think I could run an organization. I said, yeah, I’ll be glad to help out on the finance side. And so in 2011 I became the treasurer for the foundation

David Hirsch: of lifeline position.

Gene Andrasco: A lifelong position. I know it’s not a, it’s a three year term.

Okay. And then the board votes time. I’m a director on the board of directors and, um, well, it kinda is a lifelong, so there’s nobody else currently, nobody else in the foundation on the board that has a finance background. So. I’ve been doing that since 2011 I do the financial reporting. There’s government reporting that we have to do with all nine, nine 30 forum.

That’s pretty detailed, but I think I got it down pretty well to a science. We’re very small. It’s all volunteer, family, run organization. So everything is done virtually, like over the phone. Excel is our financial system because we have, you know, we’ve talked about getting like QuickBooks or something, but yeah.

It’s not that level. It’s not that level yet. And it takes an investment to put in that software and to train people on it. And right now we’re just doing Excel, but for today, I know how to do that because of my career. So I’ve been involved in the foundation since 2011. Uh, the foundation. It helps raise money in many different ways to fund research.

Since 2010 we funded over $2 million of research at a variety of institutions a lot at Northwestern, and Vanderbilt funded some research in Europe and university of Utah. The doctor that’s at Harvard right now was at Utah before, and so we’re looking at. Funding some stuff at at Harvard as well.

Different families put on fundraisers like we’ve done our walk every year. Other families do small things like that. We have one major fundraiser online each year. We use a, an online software to collect donations and then they just deposit the money into our account. And we download the information, but it’s a good way to set up web pages about, uh, you know, an event.

And so every two years we have meetings. I mentioned in 2005, went to a meeting with doctors and families and foundation funds that every two years in different parts of the country, we have family scattered all over the country. And it’s hard to travel with families, with children with special needs financially.

It’s a burden on some and just physically getting kids. And so we’ve had the meeting in California. Boston Carolina’s Chicago, Indianapolis, Minnesota. So we move it around. Uh, this year it’s in New Jersey, Newark, New Jersey, a shuttle ride from the airport. So it’s very convenient. People don’t have to rent cars or anything, but we do bring in researchers and doctors, and we started bringing in.

Specialists. So our behavior therapist, she’s going to get this meeting. She gives advice on behavior issues. We’re having the person we’ve worked with to set up a financial trust, come in and talk. We’ve had other people bring in their therapist or physical therapy. Um, different lawyers and stuff come in cause it’s not just taking care of the child’s medical.

There’s other things that you have to set up for your family to get ready for the future. We even have people come in and talk about assisted living type situations for when the kids are adults. So we mix it up every, uh, three meeting, try to mix it up and get different people to come talk. Hopefully each time we have it, we have more information on research.

So it’s a great way also for particularly families that are new, younger families too. Meet people we have, you know, we have a community online with Facebook and that, but when you get to sit down with somebody and talk to them and meet their children, it’s more powerful. You get that connection.

David Hirsch: Sounds like it’s a wonderful program and you make these lifelong.

Gene Andrasco: Friendships. Yeah,

David Hirsch: absolutely. You have something in common with them. It’s hard for other people to relate. Really relate if they’re not going through the same. So I’m thinking about advice, like important takeaways that come to mind when raising a child with differences. What advice would you

Gene Andrasco: offer? The way I was kind of brought up is kind of do it yourself.

Hard work. You can work through anything. That’s not the case with special needs kids. You have to get help and you have to get it early. Yeah, I mentioned that. My daughter’s behavior, I should have gotten help earlier. Things could kind of get away from you if you don’t like to think that I can work through a lot of things, but we couldn’t work through that.

David Hirsch: So we’re guys too. So we’re lost. We’re not going to pull over and ask for direction. So we need to get over that discipline ourselves to say, wait a second. If I’m spending too much time or I can’t do this, there’s gotta be somebody that can help me. I got to leverage my time and they need to have solutions faster.

Gene Andrasco: And really, um. Reaching out to people and letting them know because there are people that even if they can’t help you, they might know somebody who can. The one good thing about the internet and social media is it does help people connect for children with special needs and it helps families share their story easily and get advice.

My wife communicates with other mothers on a Facebook group that our foundation has set up. You know, sometimes people go, Hey, I’ll take a quick video of their child and say. This is what my son or daughter is doing today. Is anybody seen this because I’ve never seen it? And people respond, Oh yeah, or no, I hadn’t seen it.

That type of thing. Don’t think that special needs get a special needs child is different, but don’t put a cocoon around your house. That’s

David Hirsch: great advice. So I’m thinking about the advice you might have for dads with a child with a physical or intellectual disability. Any specific advice you’d give them?

Gene Andrasco: Yeah, I’m like, we kind of joked about earlier. You know, you’re a guy, you need to help. We need help. You can’t, you have to admit it early that you can’t do it alone. Um, which isn’t always the easiest thing because you think, Oh, it’s just raising a child. Yeah. There’s these different issues, but you can work through it and really, you know, getting help, talking to other families that have special needs to see what they did or what they wish they would have done.

David Hirsch: That the thing, uh, I think that that’s very important. So why is it that you’ve agreed to be a mentor father, as part of the Special Father’s Network?

Gene Andrasco: Now, thankfully guy, I know through my sons across the program, Jim decimal Polis introduced us on LinkedIn a couple weeks ago, and I had never thought of officially mentoring.

You know, I talked to some of the other parents once in a while, and there’s some of the other board members on my foundation that I’ve talked to. But it’s a great way to help younger dads learn from, you know, what I did or what I wish I would’ve done took me, like I mentioned a couple of minutes ago, reaching out to people here, getting help.

You know. Okay. Recognizing that you need help in getting the help for your child. Excellent.

David Hirsch: So is there anything else you’d like to add before we wrap up

Gene Andrasco: that we appreciate your time and the efforts you do for fathers and special needs fathers specifically, I would ask any other dads who have children with special needs who’ve gone through.

Several years of experience to definitely get involved and, and you know, help other people that are in a similar situation cause it, you will benefit from it indirectly.

David Hirsch: So if somebody wants information on the ADHC foundation, where would they go?

Gene Andrasco: Yeah. Our website is www.ahckids.org.

David Hirsch: Excellent. So Jean, thank you for taking the time and the many insights.

As reminder, Gina’s just one of the dads who’s agreed to be a mentor. Father, as part of the special fathers network, a mentoring program for fathers, raising children with special needs. If you’d like to be a mentor, father, or are seeking advice from a mentor father with a similar situation, your own, please go to 21stcenturydads.org.

Thanks again, Jane.

Gene Andrasco: Thank you.

Tom Couch: The Special Father’s Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process. New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support or if you’re a dad who’d like to offer support, go to 21stcenturydads.org that’s 21stcenturydads.org.

David Hirsch: And thank you for listening to this Special Father’s Network podcast. Stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again, to find out more about the Special Fathers Network, go to 21stcenturydads.org.