157 – Mary Anne Ehlert, Founder of Protected Tomorrows – Reflects On Life & Lessons Learned From Her Sister With Cerebral Palsy

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s network, dad to dad podcast, working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics, mission at horizon therapeutics .com

Mary Ann Ehlert: my dad would say one thing to me, I always repeat, It was after nine 11 and I said, this is just so hard. And he just looked at me. It was the first time he said it to me, honey. He always say like the honey, it was easy. Anybody could do it. It was the very first time he said, you know, you’re put on this earth for some reason.

And so just listen.

Tom Couch: That’s our guests this week, Mary Ann. Marianne helps and guides special needs families via the e-learning. And protected tomorrows dot com. She had a sister with special needs, has written numerous books on the subject. And this week she’s talking with us on this special father’s network.

Dad to dad podcast, say hello to David Hirsch. Hi, and

David Hirsch: thanks for listening to the dad to dad, podcast, fathers, mentoring, fathers of children with special. Presented by the special

Tom Couch: fathers network. This 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 dads to support dads, to find out more, go to 21st century dads.org.

David Hirsch: And if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: And now let’s listen to this fascinating conversation between Mary ann ehlert and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Mary Ann Ehlert of Lincolnshire Illinois who’s a stepmother, a certified financial planner, president of ehlert financial group and protected. Tomorrow’s a nationally recognized expert in the area of disability planning, an author, speaker, and outspoken advocate for families touched by.

disability Thank you for taking the time to do a podcast interview for this special father’s network.

Mary Ann Ehlert: Oh, thank you, David. For inviting me, I’m looking forward to it.

David Hirsch: Keeping the stepmother for 30 plus years to three young men who are now 31 33 and 34. Prior to stepping in to that role as their caregiver.

You learned about caregiving through your family initially as big SIS to Marcia. One of your younger twin sisters who had cerebral palsy and then serving as caregiver for your parents at the end of their lives. Well, let’s start with some background. Where did you grow up? Tell me something about your grandma.

Mary Ann Ehlert: I grew up in Desplaines Illinois. Fitch’s outside of O’Hare grew up in a pretty normal, as we knew normal family. I had, um, three, two older brothers, three younger sisters. The two youngest are twins and dad was a blue collar worker who also was an inventor. He was always inventing things and mom was.

Career as a beautician until she had a lot of children and then stayed home. So, but we had a great family life, but it was different, but we did know. So yeah, it was, it was a pretty close family. As I look back, you always say, oh, I wish I’d been a little bit different here and there, but it was a great, great way to.

David Hirsch: Yeah, well, it’s not lost on me that you are number three of number six of siblings, and that is a big family, certainly by today’s standards. Um, I’m sort of curious to know, how would you describe your relationship with your

Mary Ann Ehlert: dad? You know, my dad was in the beginning. My dad was a quiet guy. He let my mom did the talking.

The only time we would hear from my dad is if he came home from work, my mother would say, You know, I told you I was going to tell your dad about why you did, and then he would have a say, but he was pretty quiet until I almost, maybe I was in my twenties where he started to need to talk to me about things that I had won responsibilities for.

So he taught Trudy a pretty normal as a child, but he was always quiet. My mom was a spokesperson as we got older. And my mom got quieter. My dad had a lot more to say the older he got, the more he had to say.

David Hirsch: So are there any important takeaways when you think about your dad, something he said or always did that comes to mind that you’ve tried to incorporate into your own way of doing things or your parenting for that

Mary Ann Ehlert: matter?

My dad would say one thing to me, I. And he always said it, honey, it was easy. Anybody could do it. And when I talked to him, so as I started my career and I would go home and talk to him, but I think he liked to talk to me about what I was doing. Um, he kind of lived vicariously through the, some of the things maybe he couldn’t have done, he wished he could have done.

And so he would talk to me about it. And I remember going to him on a very difficult day. It was after nine 11. And I said, this is just so hard. And he just looked at me. It was the first time he said it to me, honey. He always say like the honey, it was easy. Anybody could do it. It was a very first time. He said, you know, you’re put on this earth for some reason.

And so just listen. Yeah. So a lot of times somebody will be struggling with something. Does this partners or whatever, and we’re having, and I’ll say, well, you know, guys, it was easy. Anybody could do it. That’s my, that was his, that was a life lesson he gave me that I always carry. Yeah. That’s

David Hirsch: fabulous.

Words of wisdom. So I’m thinking about other father influencers. You mentioned one individual, and I don’t know if you want to include him in your response. Um, Dan saw.

Mary Ann Ehlert: Dan was a business mentor. He helped me think actually he’s the one who helped me. You know, I started my business to do a certain thing and he saw something in me.

As I talked about what I wanted to do. He saw it in me before I did have the passion I had, but the biggest thing he did for me is listen. And then one day finally shake me up and say, do something with it. It was after my sister had passed away. And I was feeling pretty bad about it. And by that time I already been working with families in this business that I created, but I was out speaking to families and when my sister passed, she was 39, I was early forties and I went to one of my sessions with him and I said, I don’t know if I can do this.

I don’t know if I can get up from families and speak. I was just so. Devastated by my sister’s loss. And he just sat me down and he says, you know what, today you’re going to sit in the quarter and I want you to write. And I said, right, why he goes, all you’ve been talking about is how important she is to you and you got to do something with it.

So he’s the one who kind of shook me up and said, could fill in, sorry for you. And you have something to give. And so he made me do that and I sat and wrote about it. But the interesting thing was after that he. He wrote a booklet about it. So he interviewed me after that and wrote this letter. Book about protected tomorrows and what we’re doing.

And he was kind of, he’s a visionary in how he saw things and people, and he wrote things that he would see us doing that I didn’t even know I was going to do. And when I listened to it later, he had had CD the one with the book and I read it and I said, wow. Now I look back at that. And I was like, whoa, how did he know?

10 years, 10 years ago, or 15 years ago that I was gonna get there. But he, he was really good at helping me. I think more of what I go, what was possible. So he’s the one who gave me the courage he gave me courage.

David Hirsch: Yeah. Well, thanks for sharing. Uh, it’s not very common that somebody would have a mentor like that, that, you know, would be able to identify, help them identify, you know, some of their strengths or some of their skills way ahead of when you might’ve thought you had.

So, when I remember from an educational perspective is that, um, you went away to school and, um, you had a really hard time being away from home. I’m wondering how your educational career and then your career sort of transpired

Mary Ann Ehlert: from there. Yeah, so I was a great student in high school. I could’ve gone anywhere.

I wanted to go to college probably. But I chose to go close to home and I can remember, and I was, I was close to my sister. I was like her second mom in the house and I love. Having responsibility. So when I went away to school, I would be calling my dad saying I was in tears calling him saying, I don’t think I should stay here.

And he, he would say, yeah, just hang in there, hang in there. And it was, it wasn’t very long where I just said no, come and get me. And you know what? I think twice, he didn’t say now my parents were also, I was a girl. And so boys should go to college and girls should not, girls should stay home. Girls should find a guy Merriam and have babies and not have a career kind of the old school stuff.

Yeah. And so when he just, when I said I got to come home, he didn’t try to talk me into staying. He just came and packed my stuff up and put it in the car and came home and said, You’re going to go, just go to a junior college here. You can be, do what you need to do. And it was it wasn’t, there was not a blink from in his eye of saying, okay, this is what your.

Dads have to have courage because they see our children a certain way and to encourage them and know when to say, okay, I trust you that you’re going to do something different. Cause my brother did the same thing with his daughter. She was in college. She just said, dad, I don’t like it. And she finally came home.

I became a hairdresser and got a job, met being mentored by a top hairdresser and ended up making more money. I think, as a hairdresser, then her sister, who’s an attorney. It’s lots of school loans. Right. But my brother was courageous enough to say, okay, following. And my dad, I don’t know if my brother learned it from my dad or what, but we do learn unspoken things right from watching.

My dad never made me feel bad that I made that choice. He just let me be me. That’s important. That’s an important thing for any dad. I think

David Hirsch: advice about having the courage to what your kids do, what they want to do and not live the life that you had anticipated for them is what I, I think I heard you say.

So, um, you had to pivot, right. And I’m wondering briefly, how did your career transpire? Where’d you start how’d you get to,

Mary Ann Ehlert: I studied a couple of subjects and I decided that time I liked techno. And so my first career was in the computer programming arena, hard to get a job in those days as a female.

Matter of fact, my very first job that tells you what the people talk now about what it’s like as a female in the business world. But I went on my interview and he said, well, we’d hire you, but you’re probably going to get married and have babies. So I don’t think we can hire you. Yeah, that was, it was a big confidence could happen today.

And I said, well, can I have my teacher from school call you and tell you that I’m good. And so he did, and I got the job. So I was a computer programmer started out doing that. I had a really great successful opportunity from a couple of different companies working in that arena. And then. One of them was a great opportunity to work at a big company, take a job.

I was 25 years old. They gave me a lot of responsibility to do something nobody else wanted to do. Cause it was a short timeframe to do a lot of work. And I took that opportunity and did it and was successful. And so the company then moved me wrong along the roles in other career paths in that company, into the financial world.

And I really had never thought about that. I was good at it because I was a good at the. Computer programming and thinking in hexadecimal. So, um, it evolved into, um, the financial world. So I worked in the world of finance, helped doing funding for acquisitions and just had a career path of working for some really great leaders.

And did that for. About probably 15 years until one of my jobs was at city court. And I was working in Wisconsin at that operation and they said, okay, we’re going to move the operation that you’re running to New York. And at that point I already had responsibility for three little boys. And I said, I can’t just pick up and start traveling and moving.

And so I said, I’m just going to start my own company, whoever I never ever thought that I would ever do. Ever ever, but I just said for some reason it was, it wasn’t even a thought process. I just did it and said, I want to start this company. I’m going to be a financial advisor. I’m going to be a financial planner.

I went off and got while I was still finishing up my banking career and went off and took the test to become certified as a CFP and opened my doors and hung up a shingle. And, um, I went to my dad and said, I’m going to stick with when I’m going. He goes, I don’t know that. And so he said, how can I help?

He didn’t know anything. He didn’t know. I mean, he knew, he taught us good, basic saved money skills. He said, how can I help as well? I’m doing this cause of Marsha watching that I have responsibilities, but it seems like. There hasn’t been a lot of planning for her yet. And so I want to learn that I want to do it.

And so I helped them. He said, why don’t you work with your mom? And I help us figure out what we need to do. And we did it. And then my dad wrote a letter and he typed it in as a lump typewriter. And he talked to me about, I’m going to send this to all the parents. I know. And so he was my first sales guy.

He helped me get it started. And you know, he’d tell people about my daughter’s doing this. Do you want some. And it was it wasn’t, you know, wasn’t as easy as just hoping it would happen. You know, I remember going door to door and, or my office was a little complex and I would go to door to door. Do you need health insurance?

What can I help you with? Um, just to stay afloat until you could see enough people, if you stay focused on every family that you could help and you just, it gives you energy to go to the next. And, um, and early on, I said, okay, I’m going to tell them, keep telling my story. And. Decided to tell a story to somebody who’s in the press and got some local newspaper story placed.

And an attorney who’s works a lot in this special needs arena. Um, this was back at 90, right? So special needs trusts were just coming around and he called me up and I, uh, he’ll he’ll even say it. It’s a funny story. Press pick the ma used a heading that wasn’t exactly, um, appropriate. W it wasn’t, it wasn’t accurate.

Um, they said, you know, families have talked about family. disinheriting their child instead of doing a trust. So he called me up really angry. What do you tell him? The press sat for? I said, well, did you read the story? He goes, oh yeah, yeah. You told him what to do. I says, yeah, the heading is just goofy. And so we can make him, uh, he and I over time became.

Uh, we did a lot of business together and he helped mentor me too on the special needs, trusts and planning. And yeah. Yeah. So the one thing I do know is that if you stick to what you want to do and you listen really carefully to people who can give you good advice, and then you just. Just be quiet and listen, you get your answers.

Sometimes they’re hard. Sometimes people will help you with it. Sometimes I’m a big believer. I’m pretty spiritual about the universe and there being something there that’s helping me do good work. And even when it’s really hard, I hear my dad’s voice, but I also hear something else it’s always around me saying just, just keep doing.

Okay. And you’ll get what you need. And some days, I don’t know if you’ve ever happened to you where you’re just going somewhere and you say, I just need help with this one thing. And you get to the office and there’s something sitting there on your desk going, huh?

David Hirsch: Yeah, you do have to have faith. I’m the one want to call it blind faith, but you do have to have faith and we give that attorney a proper attribution.

Now it’s

Mary Ann Ehlert: Brian Ruben. Who I know you were aware of. And so he’s the one who probably taught me the most about special needs work very early on in my career. And, um, you know, we did a lot of work together for a very long time. Yeah.

David Hirsch: Yeah. Brian’s a fabulous guy. Um, been a mentor to me for that matter was an early adopter.

One of the very first dads who joined the special father’s number for that matter.

You’re a young professional, and you decide to become a mom, not in the traditional way by getting pregnant, but by marrying a fellow with three super young boys, one, three, and four, from what I remember.

Mary Ann Ehlert: Oh, I was a girl in love. Um, yeah, you know, when I met them, I fell in love with them too. So I married their dad. They weren’t living with us. Full-time. The bio mom had some issues. And one day, all of a sudden, the day I opened my business doors, they were also, they came along with that. So we, they had been with us on weekends and all of a sudden, one day I start my business.

The day I started my business, they were dropped off at the front door. They were little, they didn’t really know. They just thought they were coming for the night. They didn’t know somebody wasn’t coming back to take them. Well, I was like a full time mom right away. And sometimes people plan that it was.

It was hard, but I cared about them and it wasn’t easy because they didn’t know why bio mom didn’t come back. And there was just a lot of challenges. And then when she to come back, it was havoc. And then there was a journey and, you know, the times that were hard as we were younger, when my sister would have seizures, we get.

You know, and so I’m a caregiver by nature, I think because of my sister. And so things happened where my sister would have seizures and you’d learn how to do what you had to do during that time or something else would happen to her. And you had to learn how to deal with that. And so over time, it’s that special needs world where you just are resilient.

And so one day I was a mom. And so you do what you do when you’re in it. And all of a sudden you’ve got this responsibility and you’re the financial provider, the major financial provider in that household. So now I was trying to do both and shuffle and job and, and sometimes judged by maybe, maybe everything would be better if you didn’t work well, you got to surprise the FA you know, it’s all of that it’s coming in at you.

Um, But I’m always ever forever thankful that I got to do it. You were being

David Hirsch: very gracious about the situation. I wrote the book. We’ve had quite a few conversations and ended up getting divorced. And you’re the primary parent after the divorce, even though these weren’t your bio kids and, uh, you know, you really are a remarkable, uh, person, uh, remarkable mom and.

I don’t know where he got that strength, but, uh, if you could bottle that Maryanne, I’m confident that you can make a lot more money to

Mary Ann Ehlert: we’re placed on this planet to do something. I think if it weren’t for them, I would have walked away. We got all about a walked away and it would have been easy, but you don’t walk away from children who are struggling and as they became young adults, They were young adults struggling significantly with all kinds of issues.

They know drug addictions and alcohol, and all the things that young people who are abandoned by a parent might feel. And then perhaps having had no strong father figure to be there for them. And so trying to figure all that out while you’re also trying to make a living. But there were times, there were just some times and the boys will look back now and think very fondly about when we’d all be sitting there doing, I’d be doing reading, learning how to read a will and a trust, and they’d be doing their homework and, or not being able to go on a vacation at sometimes because there was just not enough to go on a vacation and play board games instead.

And now as adults, they will say those are their best times. The struggles were their best times. So. The, and they’ve all as adults, they still have journeys. I shared that my middle guy had some, had some really bad. He was the one who he thought was not going to have a struggle. The oldest was having many drug problems on the youngest head, all kinds of issues.

But the middle guy was always the one who didn’t seem to have a problem. But in reality, as he got, it became a young adult in the bio mom came back on the picture. Um, he shot himself, um, but he’s alive and he’s doing well and he’s doing really well actually. Um, and so sometimes I look at all three of them and one of them is always doing really well and the other two are struggling or one is really struggling.

So it’s like this act as a mom of children with some special needs and some youth unique needs let’s call it. My oldest now has just turned her his whole world around and gotten a career that he likes yay. And is successful, you know, and, and, um, I’ve never know which one is going to need me next. And sometimes they don’t as any parent.

Sometimes they don’t need me at all. And sometimes they need. But that’s this role of a parent. I still love doing it. And so there were days though, when all of this stuff was coming in where, you know, my sister had passed away and I had these responsibilities. So the boys, and as my parents age, they, you know, my dad had got glossed his sight and my mom had dementia.

There were days. And where I would just say, okay, this is my day. I’m going to go sit in the car and cry so that nobody sees me. Um, but I wouldn’t change a thing of my life because every single time I learned, learned something and it’s why I do what I do. If we can just take some of that. And every single time I’ve had something to pull back on, we all have to have that.

We all have to say, wow, this is really hard today. And you just say, okay.

David Hirsch: Yeah. Well, you’re a remarkable role model. Get knocked down and then get back up, get knocked down, get back up, get back down and get back up. I guess it’s not the number of times you get knocked down. It’s the number of times you get up.

And that’s what I admire. One of the things I admire most about you.

Mary Ann Ehlert: Oh, well, thank you. Thank you. I’ve been blessed. You know, I’ve been blessed to be able to have that skill. Josie have people around me who could pull me back up. I say, I was trying to write about how do I teach? How do you get back up? Or what do you have to do when it feels so bad that you don’t even know?

And sometimes when those bad things happen, You have friends who stand by you and the other people who will just say, well, they probably happen. Cause it’s your fault. You know, all that kind of stuff that happens in our lives. Right. And so how do you decipher who, or who’s really there for you and who’s not there for you and how do you let some of that stuff go and don’t be angry about it and let it go no matter how battle gut.

So I tried, I’ve tried to figure. The three things that people need to do. And how do you call on the different kinds of people you can? What kind of levels of people do happen and person that can just do it when you’re just having a bad day or a person who is having one who’s having a bad month or the person who was like, I’m in the garage crying and get me out of here then where are those people so that you can count on them?

So I thought I had it all figured out and I think I told you I was making a speech at this woman’s conference. I was telling the story and I thought, well, I’m going to tell this story because they’d heard me already. And I said, I was writing a book about the three things you need to do to pull yourself up when you’re a caregiver and everything seems to be falling apart.

What can you do? So at the time it was February. I can remember it was February with Valentine’s day and it was sitting at home. Charlie is in my life. And Charlie got sick and I thought I’d had, I was already written the book and I was going to go make this speech. So I’m telling this story now, about how on February, on Valentine’s day, Charlie got sick and what am I going to do?

He’s coughing. And he couldn’t swallow and he got really sick. What am I going to do? And so he took her to the doctor and Charlie. They said, we don’t think we don’t know what it is. So Charlie and I went to many, many doctors trying to figure out what’s wrong with him. And they finally told me he needed a feeding tube and I said, Uh, you know, it, he needed us.

He needed to eat his food a certain way and he needed to do all these different things. And then the feeding tube. Well, um, I was speaking to all these women and by that time they’re all crying. Cause they all had been caregivers, 500 women in a room we’re all relating to, I couldn’t figure out. I thought I had had the answer and now Charlie comes into my life and Charlie’s bed.

So they’re all these women. Sobbing then I put the picture up and the thing was my dog. Charlie was my dog. Who’d had mega esophagus and I’m telling the story of Charlie on purpose. And I didn’t tell him it was a dog. And so I had asked how many people in the room had been a caregiver and a bunch of them raised their hand.

So I said, okay, now let’s add our, our animals. How many have had to do that? And everybody’s hand went up. So everybody’s been a caregiver. Uh, pet a child, a parent, but it was just, they’re all like, feeling really bad that I says, so I couldn’t get a solution for Charlie and I had to finally put him down.

We thought that was your new husband. I had to add some humor. It’s just I’m in reality. I was really doing a lot for Charlie trying to roll his food up into little balls and make it cold and have them sit in a special kind of chair so he could swallow it because his esophagus stopped working. And so I are there.

I was someone who thought I figured out how to tell caregivers. He did the three things you need to do. And I totally fell apart because. Wasn’t that live. I was trying to keep him alive. So, um, we can, we can sing. We’ve got it. We think we got the solution, but we something’s always gonna throw us and we have to come back from it and,

David Hirsch: yeah.

Thanks for sharing. Good advice. What’s a talk about special needs first on a personal level. Um, and then beyond, so you’re the number three of six children. The oldest daughter. Uh, at a very young age, your mom has a set of twins, number five and number six, uh, Marsha and Debbie and Marcia is the one that you developed a super close relationship to as a result of her diagnosis with cerebral palsy.

And from what I remember, she had mostly physical challenges. She was a good verbally. And then she was honest to a fault. You would not have to question what was going on in her mind. And she lived at home for most of her life, right. With your parents. She was the one that was the person that primarily shaped your focus, your interest in caregiving.

And I’m wondering, you know, from your perspective, You know, maybe starting at a super young age four or five, whatever you were.

Mary Ann Ehlert: Well, it was interesting because when I was a kid, I loved responsibility being the oldest girl. I always love to be the helper in the house. And so my sister was two and I was six when that’s, when they got the diagnosis of cerebral palsy and I was, she was old.

And I remember when my parents went to the doctor that day, cause they didn’t know why she wasn’t sitting up and wasn’t, she wasn’t doing things. So they came home and. Um, they were upset, but they sat me down pretty calmly. And they said so, and I don’t think had the conversation with my brothers yet. And they just sat and sat and said, no, Marsha is going to be different than Debbie.

And they, um, gave us a name for what she has is called cerebral palsy. And they tried to explain it to me and they said, so as you’re going to be your helper, Um, well, when you get older, you’re going to be the one who’s going to help her. Cause you’re the oldest girl in the family. And so you’ll have that job.

And I thought that was the coolest. Seeing on the plan because I loved getting to me, it was a reward because I loved responsibility. I was just, so I love to be, I was always called the responsible kid and my sister was a pretty one. I didn’t like that part of it, but Marsha growing up then she was developmentally delayed, but you didn’t notice it as much until she got a little older.

Cause I was an adult. She was about age eight. She could walk a little bit and the older. She couldn’t and she had have, you know, she was at Shriner’s hospital for almost a year, having artificial tendons put in and a lot of surgeries. And developmentally slow and a lot of seizures. So the first seizure, we’re all sitting around and we were playing, we used to play underneath the baby grand piano and my sister, other sister.

And I, the one that sister is just two years younger than me. We were playing with them and Marsha had a seizure. My, my mother had dropped something in the kitchen. It was loud. And Marsha had the seizure and my sister who is two years younger than me, she. She credits that day to, to changing her. It was interesting how that one first seizure.

So my sister said she was the one who Marsha got sick and my sister ran and got the towel and cleaned up the mess on the floor. And she, she says that was the day I knew I was going to be a nurse. And it was interesting. Cause my sister then ended up being a midwife in her life. Um, and I S I remembered as being the day, this, this, this is a person I got to take.

So we both that one day, that one, that one, that one seizure changed how we thought. And we were little, right? So as we got older, I, but hang with my sister, I would, you know, get, be given the job to do things with her and take her places with me. And she had a twin. Um, but our twin was same age as her. So there was a bond there, but a different bond.

Wasn’t a caregiving bond. It was a, they were closed. Yeah. And so as time went on, I can remember being in the store when Marsha could walk a little bit and she’d be holding onto the grocery cart, walk into the store and to be with her. And someone would be staring at her. My, my mother had dropped us off and we were food shopping or, um, and she was in another part of the store and someone was staring at Marsha and I would turn around and say, what are you staring at?

I was her. And that was my, that was the day I said, oh, I gotta be our protected. Not just her sister. I got to be a protector and the person ran off and Marsha looked at me and she said, you tell him mayor. So she knew I was her protector. She was figure we were playing, figuring out our roles.

she was still 34 living at home with my parents. When I, my dad got a call from Claire Brock and they said they had a room opened available. And my dad said, we’re not ready. And I was like, what do you mean? She’s 34. So they don’t want to talk to her. I went to her and I said, you know, what do you want to do?

She said, well, um, I wouldn’t mind, everybody else has moved out. I should move out. But what would mom and dad do without me? So I always tell parents that people have disabilities. Doesn’t mean they. Want independence. They want it to, they’re just, there’s not sure what it means, but she wanted it. So she moved, she moved out.

By my dad, I think what, from black hair to gray here, my mother cried every day, you know, just getting ready for that move. But she lived at Clearbrook for nine years and she did really well. Not everything was perfect. You know, stuff goes, right. Stuff goes wrong. Um, so Marsha lived there for nine years.

She did things that she’d probably never would have done. You know, she had a roommate, she was responsible for things she probably never would have done. Cause my parents would have done it for her and, you know, weekends, they would take her and do things. My parents were very involved. At, you know, being sure that Clearbrook was doing the right job and making sure she was there.

And then it was a Saturday morning. I had a phone call that my sister from my dad, that my sister had had, um, had a seizure the night before, um, that she couldn’t turn over and she suffocated in her sleep. I was strong for my parents, but it was really, really hard. And my parents were fired that day.

That’s I was, I always tell them you were fired because they, that was her job. I had another, I had the rest of my life. I had the boys, I had stuff going on, but my parents, that was it. Um, it’s not the order of things we’re supposed to be in, but it’s even harder when that person. She was there life, right?

So I kept watching all these things happen to our family. She, the family was different because wherever we all revolve around that person who needs us and we all, we’re all different. My one brother who was my brother, my oldest brother was the one who, if somebody is sick, he’s outside the room of the hospital room saying, Hey, how you doing on the outside?

With her, he wanted to make her laugh. So he lost the person who he, his job was to tease her and, you know, that’s how he related to her. We all related differently, but we all, our lives all changed. So, yeah,

David Hirsch: I think I remember reading in your book that, um, when your sister Marsha died, your parents lost the purpose.

They did, right? That must’ve been very difficult, not only to lose their daughter, but to lose the person I had been so focused on for 39 years.

Mary Ann Ehlert: It’s hard. And so they tried very hard to replace that. So there were people in the house where she lived, that they’d started volunteering things for, you know, and helping out, but, but they needed to find their own.

So at that point, they started to do some things. They never would have done, perhaps take a few trips and, and do some other things. But, um, I don’t think my mother ever recovered, you know, she just didn’t. So, um, she started, she got dementia pretty early in her life, relatively early for 10 years. And. Yeah, I think it was depression that started.

And she too was very connected to my sister emotionally. So she would have just need to talk about stories. It was a good, I got to talk to them about stories. Yeah. And they would tell me stuff that I didn’t know. So I always saw parents. You have so much in your head about this person, cause you. And we as siblings, aren’t it.

So how important is it to transfer that data to the next generation who might have the job? You gotta do that because there’s so many things that are in our heads as caregivers, but they just never recovered that they were happy. It just, it was that piece that was missing because it was so important now.

David Hirsch: Yeah. Well, like you said, it’s not the natural order to bury a child. Okay. It’s sort of considered to be a parent’s worst nightmare to have to do that. And with a large family, a family of six, you know, you just have a higher probability of having one of those experiences, um, and to sad to hear you recount that, but, uh, that was just their reality, your family’s reality.

And I think what I heard you saying about recording the family has sort of history and things ties into one of the things I remember reading. Which is part of protected tomorrow. So I’d like to switch gears from talking about your experience on a personal level, and then, you know, what’s going on on a professional level.

And one of the organizations that you’ve helped start as a protected tomorrows, and maybe using that thought as a segue, one of the resources as something called the, my special life workbook. And I’m wondering if that’s. What you were referring to about capturing the stories,

Mary Ann Ehlert: right? Yeah, because what I realized after my sister was gone and I started having these conversations with my mother, she was telling me things, I didn’t know.

And I was, I thought I knew it. I didn’t know anything compared to what they knew. Right. So I realized at that point, how is it that I was a sister that was so connected and I didn’t know this. So I realize that parents try really, really hard to do their best job they can. And they also try to have these conversations as they start to realize that they may not live forever, but there’s so much in their head.

How do they transfer that? So I started to think about all the things. I wished I’d known and create. And we started with a book and now it’s all online where it’s all segmented by different categories so that if you don’t need it, you don’t need it. But if you do so we started with a hard copy book and it would give it to people to say here, just use this, fill in the blanks, make it the first day of every quarter, make it your child’s birthday, but it’s all broken down into all the different things that I wished I’d known.

That are important to now, as the person who’s going to step into their shoes, then we found people who using it, but they was a book and then they wanted to replace a page. I said, okay. What are computers for? So we made a computer system out of it. So people can go in and create the book. They can print the whole book, or they can just replace a page or they give the username a password to somebody, but at least it’s there.

David Hirsch: Well, thanks for sharing. And we jumped into one of the sort of components of what protected tomorrow’s is all about. If you were to share with our audience from sort of the top down, what is protected tomorrows and who’s involved, who do

Mary Ann Ehlert: you serve? What I learned over time is that families have a lot on their plate.

All families have a lot on her plate, right? People are working. Um, we’re dealing with schools and we’re dealing with parents jobs and we’re dealing with sicknesses and. Somebody like me or attorneys who are doing special needs, where come along and say, yeah, but you’re special. You get to also have to worry about government benefits and special needs stress, and creating these books and all this other stuff.

So where do you start if the normal family doesn’t have their wills and powers of attorney in place, why would I expect a family who has to do special? Legal planning and have to think about transition planning, and have to think about when you retire. It’s you’re not done. You’re actually retiring for three, not just two, all of those things.

Where do you start? So I found that if I could help people with one step at a time, we can make progress, but then you’ve got the emotional piece. So we are a team of financial people and social workers that work together. And then we bring in the professionals that we need to as. So we will help a family think about the child’s life.

And sometimes we’re brought in to help with school, helping them with the attorney and the legal work they need to do helping them. Then once we got the child’s plan, based on what we know today done, then we look at the parents because. If the parents aren’t okay. The child said, okay, bottom line. So we worry about the parents.

We have to think about how do the parents retire? When do they retire and how does then they never have to not fund this person. So when you retire and you have other children and they’re off doing their life, great, but you have one who you’re funding for the rest of your retirement. So we call it retiring for three or four.

I have a lady who’s retiring for six, right. Funding, other people. And then when you die. If your child’s still alive, you’re still funding them. So think about how hard retirement planning is for the average person as a financial advisor, and then put this on top of that. Yeah. Well,

David Hirsch: I love your spirit. I love the fact that you’re not, it’s not one size fits all.

You’re making it as easy as possible for people to tap into the information and the resources. And you do have a lot to offer. Um, I want to just spend a little bit of time on your book, which is entitled the gift I was given. The book came out in 2019. I read it. It’s excellent. It’s practical. It’s very personal.

Talk a lot about, you know, your family growing up about being a step-mom and beyond, I almost saw it as like a blueprint. You don’t have to go any farther than the book and you’d get a taste or a flavor for what it is you’re all about. And I’m wondering if you could give our listeners a little bit more insight about the use of the book or what you.

Mary Ann Ehlert: Okay. Well, the one thing I know is that everybody learns differently. And so we have people, I always compare this to, if you wanted to get help with. And I’m going to get healthy. I’m going to eat right. I’m going to work out. If I wanted to work out, I could go on to TV and watch Jane fonder or somebody work it out.

Right. Or if that doesn’t work for me, maybe I graduate to a planet fitness or one of those quick Lees and go in and do that. And it’s inexpensive and I could do it. But that doesn’t work for me either because I don’t see the same people going and I don’t have any commitment. So I’m going to join a regular health club and it was Penn a little more.

I’m going to get a trainer at the Huck club I’m going to show up and that doesn’t work for me. So I’m going to have a trainer come to my house, many levels of getting help. So the struggle I had many times in working with trying to help families is how do I help they hears in the parent university and they want more, how do we help them?

So the book is a component of that to say, okay, For a little small dollars. And if you can’t even pay that, I’ll get to the book, send it to you. I want you to get some steps to take. Maybe that’ll encourage you to go to the next step or the next step or whatever you need to do. There’s all kinds of resources out there.

There’s, you know, attorneys who do complimentary legal services or you come to a speech and then you get a low cost plan. There’s people who I know IEP consultants who do pre things. So if you can’t afford it, If you need, one-on-one help. There’s

David Hirsch: great resources. Thanks again for sharing. Um, thinking about advice now, and I’m wondering if there’s any important takeaways that come to mind.

If you’re speaking to our listening audience and mostly men who are raising children with special needs, um, advice you can give to them about raising a child with differences.

Mary Ann Ehlert: That’s a really good question. I think. To know that to those two questions always asked yourself those two questions about what do you really want?

What’s the best thing that could happen to this person and write it down. And what’s your biggest fear? And always, I always tell people post it up somewhere where you’re going to see it so that when you’re having a really hard time and you’re trying to make a decision, a tough decision, you’ve got those two benchmarks in front of you and say, okay, this is really tough today.

If I act this way or this way, which is. What I really want to get to. There was a family who has been struggling through things years ago that we started with, and we started with that. So those two questions and it’s been 27 years. And every year we kind of look and say, where are you? It’s never, you’re never done.

You’re never dealt with any of your children. Right. You’re always stepping up. But when we have a special, when we a child who has different needs, um, what’s going on in their life at this time, and what do we need to pivot a little bit, go back to those two things and say, what did I want? And what am I trying to avoid?

Maybe you have to tweak those, but I’m going to say that most of the. We want those same things through their lifetime for all of our children. And, but if you can have those two things to find and constantly look at that when you’re struggling, it gives you a, it gives you something to hang on to. And a couple that was really struggling through it years ago, we’ve that tool has stuck with them and they came in recently just to tell me.

That they had three children and one was an attorney, a well-respected attorney. One was a medical surgeon. Daughter was a surgeon and this child who had some differences and had a job at a pediatric, um, hospital helping out and. That had her own situation, where she lived on her own with some supports and through the journey we have that it didn’t happen overnight.

So all these things we want to get to don’t happen overnight, but if you can have something, some progress every year, but 27 years later, they came to say that they’re up their three children, their child with the disability was their most successful. And that doesn’t happen overnight, but that child was happy is independent.

They were going to be, um, had resources around them and the parents had felt they had done absolutely the best I could do to have that goal that they had set for, uh, a successful, happy, independent. And that’s all, you know, whatever it is you want, um, it depends on your capabilities, your child’s capabilities, right.

But if you can define that and keep those two things in front of you and disagree, that’s what it is. You want every decision you make, you can go back at that and say, yep. Or buy that didn’t work. I didn’t even think I forgot about it. So that would be my takeaway.

David Hirsch: So I’m sort of curious to know why is that you’ve agreed to be part of the specialist.

Mary Ann Ehlert: Oh, you know, dance plays such an important part in my dad was so special to my sister. Her life would not have been the same. Um, she changed him and he checked. No sh and they had a very unique relationship, but he was really important. My mom could not have done it alone. And so I think dads have a really important role from, from, you know, I look at my kids, um, if they’d had a constant Dan in their life, I don’t know where, how things would have been different, but I think they could have been better.

Um, and I think, oh, I just think about my dad fought so fondly in the relationship he had with my sister. It was just so important. And so. Dad’s you play such an important role. Yeah. Well thank you. Yeah. Be proud.

David Hirsch: Yeah. Is there anything else you’d like to say before we wrap up

Mary Ann Ehlert: now? I just really appreciate the time to be here with everyone and I I’m blessed to be able to have.

You know, what’s, what’s, what’s, what’s made my purpose. I’m just really blessed that I can make a difference in people’s lives and people, every single people, every single person I work with has. My plus me because it’s given me making me happy. I always still feel you make me happy to get to help. So, yeah,

David Hirsch: that’s fabulous.

If somebody wants to learn more about e-learning financial group protected tomorrows or contact you, how would you suggest they go

Mary Ann Ehlert: about doing that? They could reach me on@rtheycouldfindinformationaboutourwebsiteatwwwprotectedtomorrows.com. They could always call me at my office. They can always reach me at 8 4 7 5 2.

8 0 8 6, and my extension is two one oh, those two ways. They’ll catch me.

David Hirsch: Okay, we’ll put those in the show notes. So it’ll make it as easy as possible to prepare to follow up. Marianne, thank you for taking the time and many insights. As a reminder, Mariana is just one of the individuals. Who’s part of the special father’s network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21st century dads dot. Thank you for listening to the latest episode of the special fathers network data dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know.

The 21st century dad’s foundation is a 5 0 1 C3, not for profit organization, which means we need your help to keep our content free, to all concern. Would you please consider making a text doctoral contribution? I would really appreciate your support. Marianne. Thanks

Mary Ann Ehlert: again. Thank you so much. I really enjoyed it.

Thanks.

Tom Couch: And thank you for listening to the dad to dad podcast presented by the special fathers network. 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 see. Fathers go to 21st century dads.org.

David Hirsch: And if you’re a dad looking for help for we’d like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad also, please be sure to rate. For the special fathers network, biweekly zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email toDavid@twentypercenttareedads.org.

Tom Couch: But dad to dad podcast was produced by couch audio for the special father’s network. Thanks again to horizon therapeutics who believe that science and compassion must work together to transform lives.

It’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics at horizontherapeutics.com.