The Special Needs Mom Podcast

Balancing Identities: Mother, Professional, Advocate, Woman with Cynthia Schulz

• Kara Ryska • Episode 273

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This week, I got to sit down with the wise and feisty Cynthia Schulz, author of Shine On: Raising Our Children with Disabilities to Lead Bright, Happy Lives. Cynthia’s daughter is now 40, and hearing from a mom who’s decades down the road was such a gift.

We talked about what it was like when she first received her daughter’s diagnosis, by mail, in the most abrupt and heartbreaking way, and how she decided early on that this would not ruin her life. Cynthia shared her “play to win” philosophy and how that mindset shaped everything from advocacy to joy to building a full, meaningful life for her daughter and family.

We also got into self-care, identity, and the evolution that happens over time. Cynthia reminded me that while this life is a marathon, it’s one fueled by a mother’s love and that we can do hard things.

This one left me encouraged, grounded, and full of hope for what’s possible, both for our kids and for us.


Resources Mentioned:


Speaker 2:

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome.

Speaker:

Hello and welcome to the Special Needs Mom podcast. I'm so glad you're here. Today's episode, I am welcoming guest, Cynthia Schultz, and I was particularly excited to meet with her one because she came highly recommended by a friend of mine. And so that goes a long way. And I was excited to meet with her because she has gone beyond where I have her daughter is 40, which makes her in her seventies and beyond just age. She has experience way beyond where I do and where I've taken my son. And we all know that there isn't Emmanuel for us moms, but there are wise guides in. Cynthia Schultz is one of those wise guides. I think you're going to love her very spunky spirit. And I experienced her as somebody who was like full of fight, like a little feisty in a way I loved, but also so full of love. And I'll tell you a little bit more about her. After a 45 year career as a corporate communication executive, she's embarked on an encore career as an author devoted to helping individuals with disabilities. She's a mom of four. One with developmental disabilities, all have shaped her more than any corner office ever could. She's recently published her first book, shine on Raising our kids with Disabilities to lead bright happy lives. To help families like hers. It's the book that she wishes she had when she received her daughter's diagnosis, which as many of us will relate to, rocked her world. It's full of unvarnished stories of lots of families, hard one wisdom, and can do optimism. It reads like a love letter. And after experiencing Cynthia for myself, I can say, yeah, I feel like what I loved about her is this hard won wisdom and can do optimism that doesn't disregard processing the grief and the hard. She really exemplifies what I hope to be, which is a mom who. Doesn't stop when she comes up against barriers. Yes. You know, in the episode we talk about what happens when we get really tired and when it feels so dark and hard, we talk about that. But she helped orient us towards more possibility, more hope, and ultimately a happy life for both us and our children. Okay. With that, let's welcome Cynthia to our.

Kara:

Welcome to the Special Needs Mom podcast. Cynthia, we're so glad you're here.

Cynthia:

Thank you. I am delighted to be in like company.

Kara:

like company. That's such a nice way of saying it.

Cynthia:

Yeah.

Kara:

All righty, let's dive into your story. I often refer to kind of the, this part of our, our conversation as you are becoming, you are becoming of, owning the identity as a caregiving mom, a special needs mom, or however you identified yourself. Tell us a little bit about what that was like for you 40 ish years ago. Is that correct?

Cynthia:

That's correct. ish years ago, I had two children. We went on to have four children. But when I had just my first two, second my daughter Noelle, we call her Noni, she I was, you know, I thought to be a very typical infant, but she was slow in reaching a lot of her developmental milestones. and it wa it became concerning enough by the age of two that we went for some testing. So we do the right thing, we go for testing one day. Several months later, I open an envelope that came in the mail. Kids are playing in the living room, it was the test results from the neurologist. And I'm reading these test results and the line says, diagnosis, mental retardation.

Kara:

Wow,

Cynthia:

What, what,

Kara:

what a delivery. Yeah,

Cynthia:

yeah. a letter.

Kara:

Mm-hmm.

Cynthia:

I, I was on my knees

Kara:

Mm-hmm.

Cynthia:

in my kitchen on the floor.

Kara:

Mm.

Cynthia:

I was a mess. I, I, I couldn't, I'll never forget the moment

Kara:

Yeah.

Cynthia:

and it is no way to deliver news to a mom

Kara:

Mm-hmm.

Cynthia:

and. of the Times retardation was the clinical diagnosis in the 1980s.

Kara:

Mm-hmm.

Cynthia:

so I'm not using a derogatory term. That was her clinical diagnosis. And boy, that diagnosis hits you way harder than words like delay

Kara:

Uhhuh.

Cynthia:

or,

Kara:

Yeah.

Cynthia:

even developmental disabilities. Mental retardation, you know, you know, hits you between the eyes, what going on with my child?

Kara:

Mm-hmm.

Cynthia:

And so it was a life changing moment. first it was lots of worry, lots of fear, lots of crying myself to sleep at night, but. At some point, I just decided this is not gonna ruin our lives. It's not. We have to figure out how to make this a wonderful life. We do because I not gonna look at this like a life sentence.

Kara:

Well, and actually some of the language that you had shared as we went back and forth for me to prepare for the episode is your words were, I decided to play to win. And I particularly loved that language. Would you tell us a little bit more about what you mean by that?

Cynthia:

I. My philosophy, I look at life a little bit like a card game

Kara:

Mm-hmm.

Cynthia:

you know, you're always picking a new card from the deck. And when I picked the, your daughter has disabilities card, that card sucked.

Kara:

Yeah.

Cynthia:

I mean, I could have folded,

Kara:

Mm-hmm.

Cynthia:

I could have just taken myself out of the game. But I said, all right, I have this card. How am I gonna play this to win? And there's, you know, then you start to come up with strategies. It's just like, you know, figuring out how to do anything. You put together your strategic plan or whatever it is.

Kara:

Mm-hmm.

Cynthia:

not at the end of my life gonna be a woe is me. You know, I had this awful thing happen to me. I am gonna be happy and joyful, and so is she. So how do I make this life good for her? How can she be so happy with all these disabilities

Kara:

Mm-hmm.

Cynthia:

and have all of us be happy too?

Kara:

Mm-hmm.

Cynthia:

I don't wanna bring down the whole family. And so, was my mindset and we played it. I played it to win

Kara:

I love this analogy. I love it so much. I love the visual that you gave us because many people can interpret the card that you pulled as an unwitting hand. Like basically, there's no way to win. Winning defined, as you say, is is for all of you to be content fulfilled and happy. Having a happy experience here on Earth. And many people would, fold as you said, like maybe not give up, but actually relate to it as impossible to win. And I love that you're like, okay, well this is the, this card's in my hand. We're not getting rid of this card. But essentially, as I am kind of interpreting your analogy, is like, how many other cards do I have to pull? How long do I have to keep playing here right at this table? Two win to come up with a winning hand. And it could look a million different ways. And I love this, way of being that you're describing as.

Cynthia:

right.

Kara:

Deciding that you will win And determined to do so.

Cynthia:

And it can look, you said something very important. It can look a million different ways.

Kara:

Mm-hmm.

Cynthia:

Winning can look different for all parents out there. Whatever your journey is, it can look different. But how is your journey gonna become a blessed one?

Kara:

Mm-hmm.

Cynthia:

How is this child. Going to be fulfilled. And those are, that's all part of, it's all the same things you think of for the rest of your children. What difference does it make that one has disabilities?

Kara:

Well, here's actually what's coming to my mind that I want to invite into this conversation as well, because I'm all in. I'm all in for this conversation. And I think one of the distinct differences, especially as you know, I have four children as well. So we share that commonality, and I would say one of the distinct differences is the amount of grief that I experience in raising my son with disabilities? As compared to my others, of course. There's grief involved in, in, in all the others, but I would say, different amounts thus far in my life. And okay, so we're gonna play the win. We're both aligned in that, but how do we have grief invited to the car table, if you will? How does that look, or how did that look for you in your journey?

Cynthia:

It is okay to grieve. I it's necessary to grieve. When you get this news, it feels like it's the end of the world. You know it's not, but it is about the closest thing you can think

Kara:

Mm-hmm.

Cynthia:

the end of the world. And for a long time you lived through some very dark days. I called them my dark days it was hard to put one foot in front of the other where there was just a sadness. It stayed with you everywhere you went, and it goes on for longer than you wish it would, but at some point I thought to myself, you can't stay sad forever. You just, got to figure a way through this sadness and. I thought to myself, you know, there's gotta be a time to turn off the waterworks

Kara:

Mm-hmm.

Cynthia:

and let's get down to business and figure out how I'm gonna do this.'cause what I'm, you know, the sadness isn't gonna get me anywhere.

Kara:

Mm.

Cynthia:

So in getting work. And when I say getting to work in learning everything I could about my daughter's disabilities and finding every resource I could, all of that was work. And it took my mind off of sadness and it was getting us somewhere. We were making a little bit of progress, so I just to turn off the waterworks and. After doing that, I, I was still super sensitive. Somebody could say something to me and I could just burst into tears

Kara:

Mm-hmm.

Cynthia:

and, then I decided, you know, you're gonna have to grow a really thick skin. You're gonna have to find your steel,

Kara:

Mm-hmm.

Cynthia:

don't let these people, teachers or doctors who, whoever tell you, she'll never do this, and she'll never do that, and she'll never do the other thing. Don't let that. Penetrate your heart so you find your steel

Kara:

Yeah.

Cynthia:

and then so you don't let things hurt you as much as they would tend to. When people tell you, oh, she'll no, no to this, no to that. She'll never do whatever. And then after that, I think I started getting angry. Okay, so, which is okay. All right. I, I was overly sensitive and everything was just piercing my heart.

Kara:

mm-hmm.

Cynthia:

And then these nos that I was getting started to piss me off,

Kara:

Mm-hmm.

Cynthia:

okay? And I said to myself. Do not take no for an answer.

Kara:

Mm-hmm.

Cynthia:

Why can't she ride that school bus? Why can't she do this? I'm not saying she can do it the same way everybody else does, but we can do it a little differently

Kara:

Mm-hmm.

Cynthia:

and it can work because what was happening at the time, my daughter was ready to go to kindergarten was inclusion. Of kids with disabilities in public school. mean, was the most beautiful serendipitous coming up together of two events. So she's ready to go to kindergarten and they're ready to have kindergartners. Test. It was a pilot program in our state of Ohio

Kara:

Yeah.

Cynthia:

whether with disabilities could be in class together with a special education teacher and a typical teacher.

Kara:

Mm-hmm.

Cynthia:

And the thought of that made me so happy because there are a lot of things that she cannot do. It's very, very many, difficulties with intellectual and cognitive and motor. But she's got, she's got really good social skills and she makes friends easily and she is delightful. So, so,

Kara:

I love it.

Cynthia:

that with, you know, all the love in my heart for her. So I just thought inclusion would be so good for her and it made me happy and it was a wonderful, wonderful for her that she went on to spend the next 12 years and more than that, up until she was 22 in school as an inclusion student and being one of the first students in inclusion. She was always a pioneer, so every time it was time to go to the next grade or the next level of middle school, or the next level of high school. They'd never seen anyone like her coming before, and I had to advocate so hard for what she needed

Kara:

Let me ask you about this part of the story because. The visualization that I, I actually identified for myself of kind of what it feels like a lot of times is that like it's, I don't know, brave Heart's an old movie, but it's what came to my mind where it's like I was headed into battle, whatever it might be, whether it's medical or educational or social, it feels like I am the leader of this battle and. I'm the one out in front, and it's really tiring. So how did you. Cope with being the front runner and the advocate that's literally pioneering this. How did you deal with the fatigue that comes along with that?

Cynthia:

What gave me energy was people telling me no.

Kara:

Oh, I like this

Cynthia:

When I heard, no, I got a little feisty

Kara:

Uhhuh.

Cynthia:

and I said, that is not the answer I'm looking for.

Kara:

Mm-hmm.

Cynthia:

We need to work together find a yes somewhere in this conversation and. One of my strategies for her in middle school was this, you tell me, the teacher for typical education classes. She went, she's, half of her classes were special educational classes. Half were typical and I would say, you tell me the teacher that wants her, that's the class we'll go into. I don't care if it's French. We'll get, we'll be in French class if the French teacher wants her. it turned out the science teacher and the English teacher both wanted her in their class. those are not easy subjects to, you know, this wasn't like chorus.

Kara:

Mm.

Cynthia:

we gonna make this work? And we came up with some really creative accommodations I said, I am not. I'm not pushing a rock uphill by going with a teacher who doesn't want her. The

Kara:

Yeah.

Cynthia:

me I'm not trained well. So what I say to, I'm not trained.

Kara:

Mm-hmm.

Cynthia:

I did not major in special education.

Kara:

Mm-hmm.

Cynthia:

gave her to me anyways.

Kara:

Mm-hmm.

Cynthia:

Okay. he apparently had faith in me,

Kara:

Mm-hmm.

Cynthia:

so this notion of that there's some sort of special training.

Kara:

I know that it exists out there somewhere.

Cynthia:

Yeah, like, like they're all the same.

Kara:

Mm-hmm.

Cynthia:

with disabilities are the

Kara:

Yeah.

Cynthia:

I mean, you know one, you know one. So I, I absolutely didn't want to have her in the class of any teacher who didn't really want her

Kara:

Well, okay, so I wanna highlight this beautiful combination that you have of this, of this commitment to find the yes and. not accept no as the basically is the dead end that could stop you from creating this experience for your family and for her, but also then not getting engaged in an idealistic right, wrong conversation where you're gonna try to, make it even harder for yourself. So you're, so on one hand you're saying, I will push down any barrier. On the other hand, you're like, where's my least? Barriered places as in which teachers are most, most receptive to this, to my child. And I love this combination that you've, you know, shared with us.'cause I think it, it shows dedication, persistence, it shows your, ability to see beyond what exists, but also giving yourself a way to work that's not just gonna drive you crazy and

Cynthia:

A

Kara:

probably everybody else around you too. Yeah.

Cynthia:

and. I think having other children in the schools also gave me a little bit of a buffer with teachers and

Kara:

Mm-hmm.

Cynthia:

principals and everybody else around the IEP table because they thought I was a very reasonable mom when they knew

Kara:

I like to tell myself that I like to actually, I don't know if this is, I don't know if this is something that I should share publicly, but I also feel, I feel the same way. I'm like, well, look at. Look at what I look at what we have here. Like we have a child who's well behaved. We have a child who gets straight A's like. This is how we parent at my house. Now we also have a child who does a lot of other things. So let's just recognize this is not a, a nurture issue and let's take this as okay. Wow. Okay. She is a reasonable person. Like, you know, she shows up on time, she's, you know, whatever. so I I don't know if that's, if that, I don't know. I feel like that, maybe is giving myself more credit, but, I see what you're saying with that.

Cynthia:

that helps you. I, I really, because they knew me as my other kid's mom before they knew me as Noelle's mom.

Kara:

Mm-hmm.

Cynthia:

and, you know.

Kara:

It made it harder to other you, I guess that's what I'm thinking about. I could see still on this day that if, if there. coming from a place of, ignorance, as in they have not experienced, disability yet, that they could put you in a box along with Noel and, not engage and, not see you through the same lens as they would see a typical child and a typical mother. And I feel like by having that in your case trial, that went ahead in my case as well, I feel like it requires them to. engage in a way of already like this familiarity, which as humans is just gonna be easier for everybody. So

Cynthia:

and I can give you a very good example that happened in an emergency IEP meeting that I called when the high school was to build out during the summer An independent living center so the kids could learn living skills

Kara:

Yeah.

Cynthia:

there was no place that they could learn them. In the high school. had great conversations. It was to be built that summer and at the start of the school year, turned out nothing had been done.

Kara:

Mm-hmm.

Cynthia:

an emergency IEP meeting and. I really let them have it. But before I did, I said went to the football game

Kara:

Mm-hmm.

Cynthia:

because they were telling me it was a budget matter.

Kara:

Uhhuh,

Cynthia:

I

Kara:

Uhhuh,

Cynthia:

to the football game and you know, me, all my, my three other kids are all. In sports, and we were there and I saw the team come out, you know, with their nice uniforms and helmets. And then I saw the band come out with beautiful uniforms and all the instruments. Oh, by the way, they all rode the buses there

Kara:

Mm-hmm.

Cynthia:

the cheerleaders, you know, pompoms and it, and I, I said last I knew that was extracurricular activity.

Kara:

Mm-hmm.

Cynthia:

Now you know me and you know I'd be the last one to want athletics to go. Last one, don't you tell me that you can't find budget dollars for what it I consider to be my daughter's basic education.

Kara:

Mm-hmm.

Cynthia:

You know you get new computers for the other kids and you give kids with special needs. The used computers, no.

Kara:

Mm-hmm.

Cynthia:

you think, I think it's okay to give three of my kids new computers and won a, hand me down.

Kara:

Mm-hmm.

Cynthia:

No, it's

Kara:

I, I'm probably delusional, but I'm like, I hope that wouldn't happen today, but it probably would. But, okay. I wanna switch gears a little bit. and thank you for giving that example in terms of what it looks like for you to kind of go in and both say, Hey, I'm, I, I'm a fan of all the things you're doing, and we gotta figure out a way to serve all of your students, not just the ones that can play all these cool sports. Okay. You've shared a little bit about identity and having a multidimensional identity, and so first let's start with what was the positive impact to you of having this, you know, identity as a parent, a professional, a woman, et cetera. What was that impact for you like?

Cynthia:

Well, there were a few years I was a stay at home mom for about four years. When I got the diagnosis and I was pregnant with my third child and had to get all this under control,

Kara:

Mm-hmm.

Cynthia:

so I took a pause in my career I did what I had to do for the good of my children. And I would, I'd do it again in a heartbeat. I am not built to be a stay at home mom. It's just me. And I admire anyone really good at that. I knew I just didn't, I just couldn't be only a special needs mom. I just, was getting me out of balance. I was so, singularly focused on this child that needed so much of me and having the other kids helped me balance life a little bit better because they were not as needy. But, you know, they needed me too, so I could get a little balance that way. But I also saw myself as my mother's daughter, my sibling's sister, my husband's wife, and a working professional. I was all those things and I couldn't give up all those other identities. because I was making myself feel guilty if I wasn't spending every minute with my daughter,

Kara:

Mm-hmm.

Cynthia:

So I, I knew at one point I really wanted to go back to work and I had to figure out how that was gonna happen because for me to go back to work now was gonna mean something different. I would have to hire a nanny. I would have to make decent money hire a nanny. Okay, let's work on that, Cindy. So I did, I found a job and I found a great nanny and. I just made that work. It was, it's a lot of work,

Kara:

Mm-hmm.

Cynthia:

anybody, any mom, any working mom knows how much work it is. It's a lot of work, but have energy and I like to work.

Kara:

Mm-hmm.

Cynthia:

that's just me. And so I think if I wanna be the best mom I could be, I do have to be physically and mentally healthy.

Kara:

Mm-hmm.

Cynthia:

And or I can't take care. I be a happy mom for my kids. A fulfilled mom, you know, a mom that they can be proud of and a role model. And there are, like you had said before, there are a million ways to find solutions and I found. My solution, thinking really deeply about what would make me satisfied and happy, as well as what would make my children be the best they could be. A situation that was good and positive for them.

Kara:

I love it so much. So essentially listening to what you, who, well one who you were and then. Creating environments in which you could thrive in all the different identities that you had. And it wasn't that you wanted to give up the identity of a caregiving or special needs mom that didn't work for you to have that big, your singular focus

Cynthia:

I didn't want the special needs mom role to consume me.

Kara:

consume you. And I, I loved this aspect that you had brought up kind of as we talked about what to talk about today. Because I think that I see this. Kind of cycle, we'll call it, or evolution where. Your story is, I think, a great example of that, that in the early days, oftentimes it does consume us, right? We're learning everything. We are oftentimes surviving some really critical medical, interventions that are necessary, right? We're going from zero to 100 all in a short amount of time in some cases. And so it does, I think, start to consume us. And this is where I see, almost like this divergent road where. Some stay there where it continues to consume, and I think that's where it leads to, roads of resentment and bitterness. And I would say, not grief necessarily, but I would say suppressed emotion, not an ability to actually process the emotions. Alternatively, I see moms that, take on the identity, but continue to reinvent themselves to essentially. Create new identities in addition to this new one that they have that they didn't want. None of us wanted this identity, but now we have this. And so it's like almost back to your card game analogy. Okay. Now this is in our deck, so we're gonna keep this card. but what other cards are we gonna add to it so that you know, your words were so well said in terms of that you can be happy and fulfilled and a role model to your other children, of course, to moms like us.

Cynthia:

And as you had said, this is. There's so many ways to do this, whether it is really embracing that role and branching out from it, or it's doing what I did, there's no one size fits all it you need to find your own, happy journey on this kind of crazy journey. I'll tell you another thing, and I think this is, I think this is positive about the way the world has moved. when I went back to work, never really talked much about my children. I had to keep them pretty invisible to be thought of as, somebody Who was serious about her career. So I had four children, but they were largely, I, I kept them invisible

Kara:

Mm-hmm.

Cynthia:

and I had one with developmental disabilities and didn't talk about that either because for women, the work, women, especially women in leadership, the workplace. Was pretty unforgiving if you were drawn away from it by your children.

Kara:

Hmm.

Cynthia:

So today I think, times have changed to some degree and there's, you know, of. people's families and time that it takes to spend with those families and flexibility that parents need to be able to do those things. So in today's workplace, and attitudes are now better aligned with kids,

Kara:

Mm-hmm. Which is great. Yeah. And I love your highlighting. It has improved. I know that it doesn't sound like you and I or you and I both agree. We have not arrived and actually kind of, it's not fully evolved, but I think it's better, which I think is great.

Cynthia:

Yes.

Kara:

I wanna ask you about a aspect, so. You've even described finding self-care in this multidimensional identity, and I hear self-care and it reminded me of something recently I saw posted on Instagram that quite frankly annoyed me. And it was, it was somebody who's pretty outspoken in the disability community, very Well, respected, and I, think she actually does a beautiful job of articulating, and really identifying some of the experiences that we're commonly having. But this particular. Post talked about basically stop preaching self-care to special needs moms who don't have the support they need to take a break. And I had two points of contention with it. One, self-care is not limited to taking a break. It can be a million different things. Two, true, we don't have the support we need, but if we stop there, what is inevitable? We never get what we need and we never get. To take care of ourselves. And now I recognize it's not like, a privilege to take care of ourselves, but you've kind of described your way of being as like, we've gotta figure out how, like it's not gonna be handed to us. We know that. And that doesn't mean just because it's not right, doesn't mean we get to stop there. So what are your thoughts when I kind of described that, thought that this person shared.

Cynthia:

I don't like the world. that moms special needs kids, are, you know, just woe is me. Oh, like they're these, these poor moms. and I don't think the,'cause, I don't think the moms wanna think of themselves as. poor me.

Kara:

Mm-hmm.

Cynthia:

Poor, me. I never get a break. I never Oh, the, everybody has their village. you know, and every, you know, and, and, because the other thing about it, and I would say this to the moms, you know, self care looks very different for maybe for you than it does for me. It can look, you know, a million different ways, but what I would say to the mom you gotta figure out how you're gonna be fulfilled as a woman, as a mother, you know, and whatever other roles that you play. how you're gonna be fulfilled how you're gonna manage this that, and put your little strategy together.'cause you know, even when you've got that, you know, and you pulled the old maid and you got that card, that really sucks

Kara:

Hmm.

Cynthia:

the whole time. You're looking at your hand, you're thinking ahead of how you're, how are we gonna make this work?

Kara:

Mm-hmm. Totally. And I love this because I am very competitive in nature and games. Even when I'm playing my kids, they know no mercy from mom and they still always beat me. but I love it because I think that is like the, the energy of play that when we're actually playing like a card game. Honestly, I think is the game changing energy that we can bring. So I wanna take what you just said, and I wanna kind of start to wrap up our conversation, but bring it back to kind of something that I was thinking about when I was preparing for our conversation, and it's this. You're saying, is like, we gotta figure out how, we can do hard. We've got to figure out basically how we rise, rise above this, which I wholeheartedly agree with, and yet also I find myself like actually even right now. It just feels like, ooh, there's a wave that kind of hits me in the face and before I'm able to recover, kind of, you know, put my hair back, in its spot and take a full breath. It seems like another wave's right there and it can be a little, hard to feel like we can kind of come from that place of generating or generative energy like you're describing. So. I know that you've, you had those moments too, right? Like I'm, we're not delusional that you, you know, were, in this energy all the time. So I guess I wanna just acknowledge this because that's gonna be the, what's gonna be coming up for a lot of the moms listening to this is the Yeah, but like, I'm so tired, I'm exhausted, it just seems like nothing's going my way. How much longer do I have to keep doing this? And, oh, there's another wave in my face and now my hair's in front of my face and I can't even breathe. So what would you say to the mom that finds herself. Just getting hit with one wave after another.

Cynthia:

Well for the children with disabilities who have moms and dads,

Kara:

Mm-hmm.

Cynthia:

some, sometimes my husband and I both do this. Tag, you're it now. Ah. I'm gonna lose it.

Kara:

Mm-hmm.

Cynthia:

so sometimes it is giving the responsibility or whatever's going on or whatever needs to be done giving it to somebody else. because, it's too much. Sometimes

Kara:

Mm-hmm. Mm-hmm.

Cynthia:

much, but also. There is a marathon about this that never ends. And I think you gotta have a reserve tank of energy somewhere because, at this point in my life and my daughter's, 41. Every time we wanna go somewhere, just the two of us, we have to get a babysitter

Kara:

Mm-hmm.

Cynthia:

ev, whether it's going out to with friends who come in town, or we wanna take a little vacation,

Kara:

Mm-hmm.

Cynthia:

we wanna take a big vacation. I mean, you know, this is a time in your life when most, all my, most of my friends are empty nesters and, they can even leave their children alone for a time. Mine needs 24 7. So, my husband and I switch it. You find a babysitter. You find a babysitter. You, you make the calls

Kara:

Mm-hmm.

Cynthia:

you know, it's, it's tiresome. I mean, if other families without kids with disabilities, you know, they imagine the day they don't need a babysitter. Oh wow. The freedom of that. And here I am at, you know, my husband and I are in our seventies.

Kara:

Mm-hmm.

Cynthia:

hiring a babysitter

Kara:

Mm-hmm. Mm-hmm.

Cynthia:

So, you know, but, the other thing is that we have gotten to a place she's so happy. You know, she's got her little job. She, you know, has her little, her siblings, she does all kinds of fun things with them and, and their kids and, and. It's really working so well. She has a job. This is a kid who can't read, write, cross the street by herself, button her shirt. she's got good social skills and she's worked for 19 years at our local grocery store, and the customers absolutely love her

Kara:

Mm-hmm.

Cynthia:

she's mis congeniality of the store. So, and she's, she has a great life. so I rest on that thinking, Hey, you know what, it's all good. It's, I

Kara:

I think it's like

Cynthia:

talks.

Kara:

pep talks. right? well I think, you know, you mentioned it's a marathon, Right, And I think it's like, it's having this one, this conviction, this, Commitment that you're like, I'm gonna figure it out. I'm gonna play to win. It also sounds like it's acknowledging, okay, this is hard, I don't like it, but also tag your it. I need some help right. now. So I think it's like taking all of it in and, and recognizing it's not gonna always feel good all the time, but also that you will find your way back to where you kind of don't feel like you are, kind of being directed by it, but rather kind of giving the lead, taking the lead.

Cynthia:

You, you're living with it. It hasn't, it hasn't altered your life in, you know, it's not, your life doesn't look so much different than you might've imagined it.

Kara:

Yeah.

Cynthia:

it's a piece of your life. It's not your whole life. And in order to be a good mom to a child with disabilities, you don't have to spend every waking minute of your time caregiving for that child if you don't, you feel guilty about it. Figure out how to get over that guilt.

Kara:

Mm-hmm.

Cynthia:

you just have to figure out what state of mind you wanna be in and how you wanna live your life. And figure out a way to make it happen,

Kara:

well, you know what? There's a saying that I say often and it's that it is simple but not easy. but I wanna end on just kind of the reiteration that you and I both share. The belief that we can do hard things. And so that's kind of the commitment that it is simple, but it is not easy. But yet we can still do hard things and I think that's what's beautiful about having just conversations like this one where I think it reorients us. To that fact is that we are doing hard things And we will continue to do our hard things.

Cynthia:

And I think hard things we can do hard things fueled by mother's Love for a child.

Kara:

Bingo. I love that.'cause I, I think that that is one of the most beautiful experiences of fellow women is seeing the strength and the commitment and the ferocity that comes with mother's love. And so I think that's very well said.

Cynthia:

Yeah. All for the love of this child.

Kara:

Yes. And if you would, so actually I'm gonna put a quick plugin for The Patho to Peace Coaching Community that I run, and I wanna say it here. Hopefully those of you who listening, would've heard it in this episode already, but it's currently open, so this episode's gonna be airing mid-October. It's currently open. It's only open for a few days a year, but. I wanna mention it because a couple times you've mentioned, you gotta figure out how, which I wholeheartedly agree with again. And this is a community where we're figuring out how together. So one of the things that I preach is, together is the only way. And so this is a community where if you're like, okay, I'm with you. I gotta figure out how, let's do it together. This is your invitation to check out the Pathway to Peace Coaching Community. And with that, let's talk a little bit about your book and, just maybe the title of it as well as where people can find it. If they're like, Hey, I wanna learn more from this mom who has paved the road, quite literally paved the road ahead of us. Where can they find your book and what is the name of it?

Cynthia:

The name of my book is Shine on Raising Our Children With Disabilities to Lead. Bright. Happy lives. You can get it on Amazon, Barnes and Noble, every place that books are sold, pretty much. And wrote this book I met so many young moms and I saw myself in them

Kara:

Mm-hmm.

Cynthia:

I'm 40 years down the road and I just felt. I could maybe give them a head start because I've already been through so many of these things, and so the book I wrote what I wish I had been given when this daughter rocked my world.

Kara:

Totally. Well, thank you so much and I encourage anybody interested to check out the book, we'll have links on the show notes. And with that, Cynthia, thank you so much for being a guest on the show.

Cynthia:

I thoroughly enjoyed it, and I've, I'm a listener to your podcast, and I thank you for the good that you do for this population.

Kara:

Thank you. All right.