A boy and his mom: passions, dreams and spina bifida
Episode Summary
Eleven-year-old Easton and his mother Jennifer are a great son-mom team. In this episode, we will hear from both and learn about support dogs, supercars, playgrounds, pregnancy, birth, and spina bifida.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/yVwx-zwqNhM
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About Spina Bifida
From this Episode
Learn about the inclusive playground Jennifer spearheaded with her local Rotary Club: https://www.rotaryplaygrounds.org/
About Ethan’s favorite sport, Wheelchair Motocross or WCMX: https://en.wikipedia.org/wiki/WCMX_(sport)
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The Wisdom Shared Team
Audio Engineering by Steve Heatherington of Good Podcasting Works
Co-Producer and Marketing Coordinator: Kayla Nelson
Production Assistant: Becki Leigh
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[00:00:00] Jennifer: We want to encourage that intermingling and that socialization of exposing the differently-abled and the neurotypical to each other because they can learn so much from each other. And as children, we need to embrace those differences and teach them that it’s okay to be different.
[00:00:24] Carole: What if your child was unable to access their local playground or any playground in your general area? Jennifer, mother to Easton, found herself in that situation. Easton uses a wheelchair to get around and there were no accessible playgrounds in their neighborhood. So Jennifer began fighting hard to raise money and community support to build a playground so that all the kids in the neighborhood could play together.
[00:00:53] I was introduced to Jennifer by my friend. And after speaking with Jennifer, I realized that she had a lot of wisdom to share.
[00:00:59] Jennifer: He has taught me perseverance, patience. He has taught me to embrace the differences in people and to embrace that there’s not always just one way of going about things, that there’s always multiple ways to do things.
[00:01:20] Carole: Welcome to Wisdom Shared, where parents and their kids are the experts and where connection inspires change. I am your host, Carole Blueweiss.
[00:01:29] And today, I have as my special guests, Jennifer Crofoot and her son, Easton Gonzalez. Easton was born with a diagnosis called spina bifida. We will hear from both Jennifer and Easton today, as they share with us their journey, filled with furry and motorized passions, middle school socializing, accessibility, and much, much more. I asked Easton to describe how he appears right now. And this is what he said.
[00:02:02] Easton: Well, I’m a dark brown-haired boy in a wheelchair still in school uniform.
[00:02:12] Carole: who’s that barking in the background?
[00:02:14] Easton: Wisdom, my dog.
[00:02:16] Carole: Wisdom.
[00:02:17] Easton: Come here, come here. Wisdom – here, come here. Come here. Come here. Up.
[00:02:26] Carole: Hey, Wisdom. Welcome to Wisdom Shared.
[00:02:29] Easton: Okay, she’s done.
[00:02:30] Carole: Thanks for the intro. What kind of dog is she?
[00:02:33] Easton: She’s a yellow lab and she’s two years old.
[00:02:37] Carole: How long have you had her?
[00:02:38] Easton: We’ve only had her about a few months.
[00:02:41] Carole: Have you ever been interviewed before?
[00:02:43] Easton: Yes.
[00:02:43] Carole: For what?
[00:02:44] Easton: For getting a dog.
[00:02:47] Carole: What did you have to do to get a service dog?
[00:02:49] Easton: Well, we had to go to a two-week training class, stayed there overnight in the dorms, and we had to be trained to know how to handle one. And then we had to be matched with the perfect one.
[00:03:00] Carole: Did you get to walk around with different ones?
[00:03:03] Easton: Yep. We worked with about 11 dogs. And then narrowed it down to like six, because that means they were trying to see which ones were perfect match to people. And then we got matched with our dogs and then we got to graduate from the dog school.
[00:03:23] Carole: Were there other grownups and kids with you?
[00:03:26] Easton: It was mostly grownups.
[00:03:29] Carole: Were you the only kid?
[00:03:31] Easton: Yeah.
[00:03:31] Carole: How did that make you feel?
[00:03:34] Easton: Didn’t bother me.
[00:03:36] Carole: Does the dog choose you or you choose the dog?
[00:03:39] Easton: The dog has to choose me. The dog has to like me.
[00:03:42] Carole: So Wisdom was the one that liked you the most?
[00:03:45] Easton: Yeah. And she acted the best around me. She was the only one that paced with my wheelchair while walking.
[00:03:53] Carole: Wow. So she’s really smart.
[00:03:55] Easton: Mm-hmm. She just knew. Apparently, she just knew.
[00:04:00] Carole: And there were other dogs that didn’t know?
[00:04:03] Easton: There were other dogs that really didn’t have that part of them. And I don’t know what it was about Wisdom, but she just knew what to do.
[00:04:12] Carole: Tell me a little bit more about Wisdom. So a little bit about her personality.
[00:04:15] Easton: She’s really funny,
[00:04:18] Carole: friendly or funny?
[00:04:19] Easton: Both, both friendly and funny. She’s really nice. She’s very calm, but when she wants to play, she really wants to play. She’s like really funny in the mornings. She does little hops. Her tail just goes like a million miles an hour.
[00:04:37] Carole: Does that mean she’s happy?
[00:04:39] Easton: She’s really happy in the mornings. ‘Cause her tail just goes.
[00:04:45] Carole: She’s waiting for you to wake up.
[00:04:46] Easton: My mom lets her wake me up and she literally sprints onto my bed and starts licking me.
[00:04:52] Carole: Did she come with that name or did you give her that name?
[00:04:54] Easton: She came with that name.
[00:04:56] Carole: It’s kind of perfect, right? Cause like you said, she just knew how to walk with your wheelchair.
[00:05:02] Easton: Mm-hmm
[00:05:02] Carole: and with you,
[00:05:04] Easton: yeah.
[00:05:05] Carole: Do you call Wisdom a pet or a service dog?
[00:05:08] Easton: She’s both my pet and service dog.
[00:05:11] Carole: How does that work? If you have a pet and a service dog, how does she know when to be which?
[00:05:16] Easton: So when I’m with her in public with her service dog vest, she’s a service dog, but when she’s at home, she’s not a service dog. She’s a regular pet.
[00:05:26] Carole: She has time off. She’s not working.
[00:05:28] Easton: She doesn’t always work. She definitely is off a lot. She just works when we go out places.
[00:05:37] Carole: And then how does she help you?
[00:05:39] Easton: Just both mentally and physically. ‘Cause I have a surgery coming up next month, so I need her, her comforting, recovering. And she also helps me physically ‘cause that’s with the surgery, I won’t be able to pick things up.
[00:05:57] Carole: What kind of surgery are you having?
[00:05:59] Easton: Rods in my back.
[00:06:01] Carole: So Wisdom will be able to help you with picking things up.
[00:06:05] Easton: Picking things up, yeah. So she could pick things up and then give them to me.
[00:06:10] Carole: That’s great. And then probably can help you with all kinds of fetching, right? That you won’t be able to. You’ll be recovering. You won’t be able to move at first.
[00:06:18] Easton: Yeah. And I won’t be able to move at first so she could do that.
[00:06:22] Carole: And then of course, I’m assuming that you consider Wisdom one of your friends?
[00:06:28] Easton: Definitely, a furry friend,
[00:06:29] Carole: Furry friend. Do your friends like her?
[00:06:32] Easton: Oh yeah, everyone does.
[00:06:33] Carole: What are some of your favorite places to go on weekends with your friends?
[00:06:37] Easton: Usually when I wanna have a play date with my friends, we go to our local park.
[00:06:43] Carole: And what do you like to do there?
[00:06:45] Easton: We ride bikes and go on the trails and stuff.
[00:06:51] Carole: Talking about the park, your mom told me about the playground that you and her are helping to build.
[00:06:57] Easton: I’m just really the inspiration for the build.
[00:07:02] Carole: Tell me about that. What do you mean?
[00:07:04] Easton: So they built this playground for people like me. In wheelchairs and walkers.
[00:07:11] Carole: Describe to the audience what this playground is gonna be like and why it’s different from other playgrounds.
[00:07:17] Easton: It’s gonna be all wheelchair accessible. It’s gonna be all accessible.
[00:07:21] Carole: What’s accessible mean to you?
[00:07:23] Easton: Well, the playground is gonna have all ramps to get up into the place. It’s gonna be the wheelchair swings.
[00:07:30] Carole: Your mom told me that kids with disabilities and kids without disabilities can play together.
[00:07:35] Easton: Mm-hmm .
[00:07:36] Carole: What do you think about that?
[00:07:38] Easton: Great. It’s really great, honestly.
[00:07:42] Carole: Is it hard for you now to play on the playground? The way the normal playgrounds are?
[00:07:47] Easton: Oh yeah, definitely.
[00:07:49] Carole: What’s hard about it?
[00:07:50] Easton: I can’t usually get on the equipment like normal people.
[00:07:54] Carole: Because you’re in the chair.
[00:07:55] Easton: I could get out of my chair, but then I’m afraid of getting stepped on, like my hands.
[00:08:02] Carole: What about getting into other buildings and places? Do you ever encounter that it’s you just can’t get in ‘cause there’s no ramp?
[00:08:10] Easton: No. Well, my mom will find a way to help me.
[00:08:12] Carole: Can you describe some times when it was hard to get in and your mom helped you?
[00:08:17] Easton: The Supreme Court in Tallahassee, gonna go in there for a tour and it was all steps. My mom carried me and someone else carried the chair. That’s usually how it goes.
[00:08:31] Carole: Do you have any idea what you wanna be when you grow up?
[00:08:34] Easton: Probably something in the law enforcement, a police dispatcher, or something like that.
[00:08:39] Carole: Do you have any advice for kids?
[00:08:42] Easton: You could find a way to figure it out. I mean, when you’re in a wheelchair, you usually figure out how to do things.
[00:08:50] Carole: So you don’t let the wheelchair stop you.
[00:08:52] Easton: No.
[00:08:54] Carole: Because sometimes if someone’s brand new in a wheelchair, they might be scared or, you know, so it’s good to hear from people like you.
[00:09:00] Easton: I mean, since I’ve been in a wheelchair my whole life, it’s like you said, nothing really stops me. ‘Cause I know there’s a way.
[00:09:10] Carole: That’s good for other people to hear. Is there anything that makes you angry?
[00:09:16] Easton: Only some days it gets to me that there’s some things I won’t be able to do, but sometimes not.
[00:09:27] Carole: So like what’s some things that are like that?
[00:09:30] Easton: Well, certain sports.
[00:09:32] Carole: What’s your favorite sport?
[00:09:35] Easton: Wheelchair motor cross. Like wheelchair BMX. You go down ramps, do stunts in a wheelchair.
[00:09:44] Carole: What makes you happy?
[00:09:46] Easton: Having friends.
[00:09:48] Carole: Why do your friends make you happy?
[00:09:50] Easton: They’re there for me.
[00:09:52] Carole: What does that mean? Tell me more so I can understand.
[00:09:55] Easton: They’re always by my side.
[00:09:57] Carole: What does that mean? They’re by your side.
[00:09:59] Easton: They always have my back.
[00:10:00] Carole: If you could do anything for an entire week with anybody that you choose to go do something with, where would you go? Anywhere in the whole wide world.
[00:10:11] Easton: Probably the park, just to hang out for a whole week with my friends.
[00:10:16] Carole: Your mom told me that you know everything there is to know about supercars and hypercars, which I don’t even know what that means.
[00:10:23] Easton: Honestly, I don’t even know where to start with that.
[00:10:25] Carole: Tell me about how you got interested in cars and what are your favorite cars?
[00:10:30] Easton: Well, I just started liking them so much.
[00:10:33] Carole: What cars do you like?
[00:10:34] Easton: Everything.
[00:10:35] Carole: Every single car?
[00:10:37] Easton: Oh yeah.
[00:10:37] Carole: Do you have a favorite car?
[00:10:39] Easton: Most of the supercars, the really nice cars.
[00:10:44] Carole: Is that what a supercar is? It’s a really nice car?
[00:10:46] Easton: It’s like a high-performance sports car.
[00:10:50] Carole: What’s the name of a car that’s a supercar?
[00:10:52] Easton: A Lamborghini.
[00:10:54] Carole: What’s a hypercar? Your mom said you love hypercars.
[00:10:57] Easton: So hypercars are the one step up from a supercar. So they are like multimillion-dollar cars.
[00:11:04] Carole: Wow. So is there an example?
[00:11:07] Easton: Like Bugatti.
[00:11:08] Carole: So I guess you like Ferrari.
[00:11:10] Easton: Definitely.
[00:11:11] Carole: So if you could have any car in your garage, which one would you pick?
[00:11:14] Easton: Lamborghini.
[00:11:15] Carole: Anything you’d add to the car?
[00:11:17] Easton: Definitely. A lot of modifications.
[00:11:19] Carole: A lot of modifications.
[00:11:21] Easton: Oh yeah.
[00:11:22] Carole: What’s the most important one that you can think of?
[00:11:25] Easton: Probably an engine swap
[00:11:27] Carole: And then would it make more noise or it just goes fast?
[00:11:30] Easton: Go faster. When you want a supercar, you want to go fast.
[00:11:36] Carole: The problem is where do you drive it that you can go so fast?
[00:11:39] Easton: I honestly don’t know, like open roads and it’s really just nice to have one of those cars. It’s just a nice car. Most of the engines just sound amazing.
[00:11:52] Carole: What are you gonna do now?
[00:11:53] Easton: I have no idea. Probably have dinner.
[00:11:57] Carole: Thank you, Easton. Thank you so much for taking time out of your busy day. I know that school can be tough, so thank you.
[00:12:04] Easton: It’s your turn, mom. Get over here.
[00:12:08] Carole: Bye, Easton. Well, thanks so much.
[00:12:15] What has Easton taught you?
[00:12:17] Jennifer: He has taught me faith. He has taught me perseverance, patience, love in ways that I could never even imagine. He has taught me to embrace the differences in people and to embrace that there’s not always just one way of going about things, that there’s always multiple ways to do things. It’s something new daily.
[00:12:47] Carole: And his surgery that’s coming up?
[00:12:49] Jennifer: We scheduled it for the summer, ‘cause it was such a long recovery and he’ll have the rods put in his back. He drops his pencil, he’s not gonna be able to bend over and pick it up. And that’s one of the things Wisdom is trained to do is to pick stuff up off the floor when he drops it and open doors and open drawers and she can push the wheelchair buttons that open the doors automatically at the public places, she can jump up and push the button that opens the doors for the wheelchair accessibility.
[00:13:12] Carole: What is the role of Wisdom for your family?
[00:13:16] Jennifer: I think she brings a calm to this house. Easton is really high anxiety. And I feed off of that. Out of all the dogs we worked with, she’s probably one of the most chill dogs you’ve ever met. She is just chill and calming, and I think she brings a calm to him, which helps me. And Dave, my husband, is just a dog person anyway, and just loves her. Getting up in the morning is fun again because, you know, she’s so happy to see you. I mean, she’s Easton’s dog, but she’s emotional support for me too. And I spend the majority of the time with her, and she’s been an incredible addition to this family in so many ways. And she just brings joy and a calm to this house that we weren’t experiencing before.
[00:14:00] Carole: His main role is more emotional.
[00:14:03] Jennifer: Some of it is, but again, with the back surgery, she’ll go get things for him if he needs something and she’ll open something, if he needs it. She is both physical and emotional for him, which is great. She’s emotional for me.
[00:14:16] Carole: What was your pregnancy like?
[00:14:17] Jennifer: I went in at 22 weeks to do a gender ultrasound just so they could check on everything and was very excited, went in with a lot of hope and excitement. And they had a really hard time. They couldn’t tell that Easton was a boy. He had his legs crossed. I now know that it’s because he was not moving his legs.
[00:14:39] The ultrasound tech told me to get dressed and go back into one of the rooms and that the doctor would come meet with me. By the grace of God, I had enough sense to take a friend with me that day. His dad at the time was not in the picture. And I’m sitting in the room and the doctor walks in and she has tears in her eyes. And she looks right at me and she said we found something.
[00:15:00] There is a defect on your baby’s spine. Most likely it’s spina bifida. The layman’s term is spina bifida. The medical term is called myelomeningocele. Spina bifida comes in three different varieties. She said my colleague is down the street, he is a maternal-fetal specialist. I have already sent your films over to him and he’s waiting for you right now.
[00:15:27] So I was whisked out of her office and went down to the maternal-fetal doctor. This is not the appointment that I thought I was gonna have. And went in, met the doctor, and the words were not good words. They were this is a significant, an extremely significant birth defect. From what I’m seeing on the films, we’re not looking at a good quality of life. You’re 40 years old. You’re of advanced maternal age, which is the real PC way of saying you’re old to have a baby. He said, if you have any other things going on, this baby will not survive this pregnancy. You will not go to full term. Meaning the pregnancies, when you start reaching your forties, they start looking at things like down syndrome. He says, if there is more than one issue, this baby will not be born.
[00:16:27] He said the next step would be probably an amniocentesis. We need to figure out if there’s more going on. They tell you all of the bad things about having a child with spina bifida. They will paint the bleakest, darkest, ugliest picture they possibly can, but they don’t ever tell you the good possibilities. I was up in Nashville at the time. And there was not a chapter of the Spina Bifida Association that was active in Tennessee. So I joined the Kentucky affiliation. Doctors actually have to tell both sides of the story when the child is diagnosed with spina bifida. They get to show pictures. Hey, here’s Easton, he’s 10. He rides a bike, he goes to school, he does this. Now here’s the other side. They have to tell you both sides. Most women are gonna go off the advice or the encouragement of their medical professional. If I’m asked 10 times, if my faith wasn’t strong, at one point, I’m gonna say, yeah, I can’t do this.
[00:17:38] That’s one of the things that Easton taught me, going back to your original question is doctors aren’t always right. But malpractice is rampant. They have to paint the worst picture possible so that they’ve told you everything that could possibly happen to your baby. I don’t think that they painted a picture with the broader strokes that they should be painted when it comes to that.
[00:18:02] And here to say that I am 40 years old having a baby. I’m a single mom. I’m by myself. I’m having a baby with a significant birth defect. And 10 years later, can’t even imagine my life without Easton. And all the people that he’s touched and the lives that he’s impacted. You asked me how my pregnancy was. From the time I found out to the time I had him was probably the worst time, because there’s that unknown. You don’t know what you’re gonna get.
[00:18:34] Carole: Did the amnio give you some peace?
[00:18:37] Jennifer: A little bit. There was no other defect or no other issue. And that was a 24-hour waiting period too before I found out the results of that amnio. So I had a 24-hour period where I really didn’t know if Easton was gonna make it or not.
[00:18:52] I did have a little bit of peace, but my faith gave me the bigger peace that was there. I just knew that without the sequence of events, of not supposed to be able to ever get pregnant and then getting pregnant and at my age and just everything that just kind of fell into place the way that it should.
[00:19:12] I just knew that I was there to raise this child. I just knew that that was part of my job and part of my calling. And it was not my decision whether Easton came into this world or not. It just wasn’t. And I have always looked at it that way.
[00:19:29] Carole: That must be peace in and of itself that you were so clear. I imagine that for some people they don’t necessarily have that clarity and that makes it worse.
[00:19:38] Jennifer: Very, very blessed that I had the most clarity of anything in my whole life that I’ve ever had.
[00:19:44] Carole: So what was it like when you were there and going into labor?
[00:19:47] Jennifer: I would say 99.5% schedule a C-section. So I picked the greatest birthday in the world for this kid, which was 1/11/11, ones all the way across. I woke up on the 10th in labor. Once again, a reminder that I’m not in control or in charge. And we called into my doctor and he said, you know, I’ll meet you at Vanderbilt. Looks like this baby wants to come today. Said okay. With babies with significant spina bifida, within 24 hours of their birth, they go and get their back closed. They have back surgery. So this whole schedule was thrown off by me going into labor. By the grace of God, the neurosurgeon had the opening to be able to take Easton within 17 hours old when they took him back and line it all up. And it was the worst snowstorm and ice storm that Nashville had had in 40 years.
[00:20:46] We got stuck on the way to the hospital. Easton loves to hear the story about how we almost didn’t make it to the hospital and all of that fun stuff, but we made it.
[00:20:54] Carole: What was one story?
[00:20:56] Jennifer: The roads were just so icy and so bad. And I had a little Honda Accord at the time. And we’re trying to get out of the neighborhood and it’s uphill and we keep sliding. Like we were literally stuck. We slid back into a snow drift. I’m in labor. I had a friend who had a pickup truck, so I texted him and I said, are you out and about running errands? And he texted me back and he said, yeah, what you need? I said, are you in your truck? He texted me back and said yeah. I said I’m in labor and we’re stuck and I need you to come get me.
[00:21:24] And he called me and he’s like, what are you doing texting me? I’m on my way. So he pulled us out and we were finally on our way, but it was very slow going because it was so bad. So we walk into the hospital and they’re like, we expected you hours ago.
[00:21:42] Carole: Yeah, that is a good story. I can see why Easton likes to hear it. For people that have no idea of what it means to be born with this idea that your back is actually open.
[00:22:00] Jennifer: They actually call it the snowflake disease also because no two cases are exactly the same. So the defect can go anywhere from on your spine to like right under the base of your neck, like your cervical region, all the way down to your sacral region, which is your tailbone. And anywhere in between.
[00:22:16] So the birth defect could be anywhere on the spine. It really depends on number one, where it is. So that controls how much function you have because obviously encased in your spine is the spinal cord. So all those nerves are affected. So the severity depends on where it is on the back. Sometimes the nerves are outside of the spinal cord when they’re born. It depends on how the closure takes place and none of that can be predicted. And you can have two children side by side that have a defect in the same range. And their level of function could be completely different. For some children, there’s a cognitive effect, developmental delays. For others, there’s not, and it’s just physical. So it was the broad range of your child’s gonna be a vegetable, he’s never gonna walk, he’s never gonna talk, he’s never gonna have a quality of life. You’re gonna have all these medical bills or you’re gonna have procedure after procedure. All of this. Just on and on and on and on.
[00:23:16] I found a Facebook group and I joined the support group. And the first thing they told me is don’t Google. Come talk to the moms and dads that are living this every day. And I did. And that is the one thing that honestly, other than my faith, it’s the one thing that got me through, because they said that from this point to the time you have him will be the worst time.
[00:23:38] But when you lay your eyes on him and he becomes like this real deal. Spina bifida was not even on my radar. It just was a nonissue once he was born. It was just like, why did I even worry? What was I so worried about? Here, he’s perfect. I don’t care what anybody says. I just can’t say enough that doctors aren’t always right. They’re just not. I respect them. Don’t get me wrong. There’s a lot of good things that doctors do and have done for my son. It’s a lot of guessing based on what they do know and what they study. And spina bifida isn’t one of those things that a lot of doctors know a lot about.
[00:24:21] Carole: What did you learn from the other families?
[00:24:24] Jennifer: It was so encouraging to me. They had a lot of meetups. Like once a month, the kids could get together and play. And I’m eight months pregnant and they invited me to one of these. And I actually got to lay eyes on children with spina bifida that were thriving and just talking to the moms and the dads and watching these kids and they’re happy.
[00:24:45] And they don’t know that they’re different or care. That was so encouraging. If I had any questions and what to expect and how are things going. And just from that side of things, support was unbelievable. Just unbelievable.
[00:25:02] Carole: And did he need special care or did you need special instruction? We all do when we come home with a newborn.
[00:25:07] Jennifer: Sure, sure. All the rules went out the window. You don’t put a newborn on their belly, all this stuff. Well, Easton couldn’t be on his back. He had this huge scar on his back, so we had to get a wedge. So he’d sleep on his side, but he couldn’t put pressure on his back except for like diaper changes. The traditional advice you get as a new mom was out the window.
[00:25:27] Carole: When our children are babies, you watch them develop. There are milestones and you watch those. How was it for you in that sense of you knowing that it wasn’t gonna be a typical development?
[00:25:40] Jennifer: There is a process, and this is the other thing that a lot of the moms helped me through in the support group. You have to go through a grieving process of that baby you thought you were gonna have isn’t gonna be the baby that you got. And so you have to adjust your dreams. It’s a paradigm shift. The great thing about that with Easton being an only child and being my first child was I didn’t have anything to compare it to.
[00:26:06] So the fact that he wasn’t moving his legs wasn’t alarming to me. I’d never had a baby before that did move their legs. It was a non-issue for me, because I just didn’t have anything to compare it to. I didn’t have that expectation. So everything that he did do just was that much more surprising and exciting and a blessing and a benchmark and a milestone.
[00:26:35] Because cognitively he was exceeding everything. And his little personality and everything just came out very, very soon. The great thing is he started going to spina bifida clinic when he was two weeks old. They had a comprehensive clinic at Vanderbilt, which was wonderful. They’re very proactive.
[00:26:57] They get you involved with orthopedics and GI and because everything can be affected by that. And they get you into physical therapy and occupational therapy before they’re even six months old. But silly me who’s never had a baby before, I didn’t know this wasn’t normal. That’s just what you do, right?
[00:27:16] So that was the blessing of being a first-time mom, in that I didn’t, this is my normal. That I don’t have anything to compare it to or know that it’s not the way things go.
[00:27:30] Carole: I wonder, all moms have imaginations. And I just wonder when you were pregnant, were you worrying that, or I don’t know what the word would be, but imagining all kinds of scenarios already, like before Easton was even born, that you knew your child was gonna be different. You didn’t know how different.
[00:27:49] Jennifer: I did. I did. I just didn’t let myself go there. I honestly didn’t. I knew he would probably be in a wheelchair. That was the extent that I went to, but I couldn’t, even at that point, I couldn’t see that far ahead. Like I just, I couldn’t, and I don’t know whether it was just because it was self-preservation or whether it was just, I didn’t know to think that far ahead.
[00:28:15] All I could think about was when he was born. And then when he was born, all I could think about was getting to the next week. So it was always so incremental and the blessing in that is that the information and everything came in very small doses and keeping in touch with these other moms and seeing these other children that, yeah, that’s a possibility.
[00:28:38] But look at that kid, like he’s like flipping amazing, like he’s out there doing tricks in his wheelchair, so it never occurred to me that it was going to be a struggle or a burden. And it hasn’t been.
[00:28:51] Carole: For you, was it a paradigm shift?
[00:28:54] Jennifer: After he was diagnosed in utero, I did grieve. There are days even now that I have to grieve that he’s not where other kids his age are on certain things.
[00:29:07] He’s never gonna be able to get a varsity letter in sports. There are things that he’s just not gonna be able to do. And there are times where it’s hard. You can’t get on the playground equipment and those everyday things that most people take for granted, they can be struggles. I do have to grieve that every once in a while.
[00:29:29] I do have to say, and it’s okay for me to feel bad about this. And Easton has his own days where he has his pity party and we don’t have them often, but when he does, I let him feel it. Mom, why can’t I walk? Why can’t I be like my friends? Why can’t I? We go through this, but you know, we waller in it for a little bit. We feel it. And then we change our mindset and we move forward. And remember all the blessings and the good things that are coming from everything that has happened and will happen.
[00:30:03] Carole: Yeah.
[00:30:03] Jennifer: But there’s still grief. There’s grief in increments. Just because something hits you and you’re just like, oh, that will never happen. You know, I think about, yeah, he’s 10, but he’s gonna get his learner’s permit in five years. Right? So that’s a whole different thing I have to think about. He’s not gonna be able to do things like his other friends. There are things that you just have to grieve that it’s just not gonna be society’s standards of normal, but they’ll be our normal and it’ll be okay.
[00:30:33] We’ve always told Easton you can do anything anybody else does. You just have to do it differently and you gotta figure it out. That’s how it is.
[00:30:43] Carole: The way you described the lower back being affected with the spine and his brain not being affected. His two legs, everything below his waist doesn’t move, but otherwise, everything above his waist moves as it would for anybody sitting?
[00:31:02] Jennifer: He actually has feeling down to his mid-thigh. So it’s like mid-thigh down. He can move his hips, he can swing his leg. He has a little bit of function in his right quad muscle, but he uses his hip a lot to swing that leg. But there’s no feeling. And there is no function from like mid-thigh down.
[00:31:27] There’s other organs that are affected, bowels and bladder and things like that. So you have to make accommodations for that. And sometimes it develops and sometimes it doesn’t develop. He doesn’t have feeling, but he functions like pretty much anybody else.
[00:31:42] Carole: So with his bowel and bladder, he has to just do something different than a typical child who goes to a toilet.
[00:31:48] Jennifer: Correct. He was in pullups for a really long time. And then when I thought he was ready, we started talking to his urologist and we do intermittent cathing. Now he’s in regular underwear. Every four hours, he goes and empties his bladder like everybody else. Well, not like everybody else, but he empties his bladder. And then he goes on his way. We have a nurse at school that takes care of that. We have it managed. It’s great. It’s just a little different. That’s all.
[00:32:11] Carole: You figured it out.
[00:32:12] Jennifer: You have to.
[00:32:14] Carole: What’s it like for him do you think in school? I imagine it sounds like he has some great friends, but you know how school is.
[00:32:21] Jennifer: That’s always a fear, but we’re very blessed in that he goes to a private school. So he’s been with the same kids since kindergarten. Most of which are fiercely protective of him. He is a social butterfly. He thinks that his particular school was put on this earth to promote social life. He has several friends that pretty much argue over who’s gonna carry his backpack and who’s gonna carry his stuff and help him with different things.
[00:32:49] So he has some very fiercely loyal, loyal friends. And they all have his back. There was one kid that was new and left Easton in the bathroom by himself. He can’t pull open the door and his best friend put the new kid up against the wall. And he says, don’t you ever leave Easton in there by himself. Got it? Got it. So like they just, they look out for him. They look out for him. And because he’s at a private school, he’s only the second kid in this institution that’s ever been through that’s in a wheelchair. Everybody knows who he is. Part of it’s his personality, he’s lovable, he’s an empath. And he’s got the kindest heart and he’s exuberant.
[00:33:29] He’s excited. And he just is a neat person. And people see that. And of course, he is also your typical 10-year-old, where he’s ornery and stubborn and can be emotional. I think most of his frustration comes at recess. He does have a friend who is excellent at soccer, and they’ve actually been getting him out on the basketball court and trying to teach him how to play soccer with his hands.
[00:33:52] All the boys are out playing football. And all the girls are playing four-square and he’s like, okay. Or all the kids are out playing basketball. And he does have a couple kids that try to involve him. Like kickball, they designate somebody to kick for him. And then he gets to do the bases, but he feels bad.
[00:34:07] He says, I always get out. Nobody in navigating his wheelchair. So, there are some kids that really recognize that. And I think that is where most of his anger and frustration and sadness come from. Thank goodness it’s fifth grade. This is the last year we really have to deal with recess. But I think a lot of his I hate spina bifida days come from really bad recess days.
[00:34:31] He’s just been left out and he sits on the sidelines and just kind of watches everybody. That’s been a struggle from the beginning. Sometimes he won’t want to do what you’re doing, I said, but the invitation in and of itself is gonna mean something to him. Hey, Easton, come play four-square with us. I said, it’s up to him. If he says, no, that’s on him.
[00:34:50] But if they asked to include him, they’re doing their part. Like I said, this has been an ongoing struggle and PE is usually never an issue because you’ve got teacher guidance and they’re really good at trying to find ways to adapt stuff. But at recess, it’s kind of like go do your own thing.
[00:35:08] There’s aids that are watching to make sure nobody’s, you know, they’re not killing each other out there or doing anything inappropriate. But it’s kind of like, it’s your own free time and you can’t make somebody play with somebody else. They get their little group together and they play football at recess or basketball at recess.
[00:35:25] He’s never expressed doing any adaptive league stuff other than the WCMX, which he absolutely loves. He loves going to skate parks. He is scared to do new things because he’s so scared of not doing it perfect for the first time. He does not leave any room for himself to learn. He has that immediate gratification or that I should be good at it right away. And doesn’t realize that the moment you pick up a basketball, you’re not gonna be able to just play basketball. I’m hoping he grows out of that.
[00:35:55] Carole: Yeah, or he finds the right person that will lead him in.
[00:35:58] Jennifer: Correct.
[00:35:59] Carole: Do you work outside the home?
[00:36:01] Jennifer: I did for the first seven years of his life. I worked full-time and I was a single mom. And not had to work since we’ve gotten married and my job is taking care of Easton. There are lots of appointments. There’s a lot of juggling going on. There’s a lot of hours on the phone with insurance companies and medical supplies and all of that stuff. So, I don’t work, but I’m hoping, you know, when he hits middle school, high school and he is a little bit more independent that I plan on going back to work.
[00:36:28] That was one of the other lessons I really had to learn. You have to set your pride aside and you have to not be afraid to ask for help because there is a village out there for you. I mean, no matter what your child’s disability is or how differently-abled your loved one is, there’s a village out there that is going through something very similar.
[00:36:48] And it is just about connecting yourself with that village and tapping into all the resources that are available and not being afraid to ask for it. Because it’s your loved one. This is your loved one. My family jokes around me because they’re like, yeah, your insurance turned you down for that. Did they know what they got into when they did that with you?
[00:37:11] No, they didn’t. Yes, it’s time-consuming, but there are so many resources. There’s somebody that’s been down that path before you, and if you can just allow those people into your life and accept their guidance and their wisdom and their experience. And even if it’s just somebody to listen and get that empathy and get that validation that you need, because we weren’t made to be moms, nurses, caretakers all at the same time, and it’s just, it’s overwhelming.
[00:37:42] And you just have to put that aside and say, is this in the best interest of the person that I’m taking care for? And is it in the best interest for me because I have to take care of myself in order to be the best for that person as well.
[00:37:57] Carole: How do you take care of yourself?
[00:38:00] Jennifer: Oh, not as good as I should, but I have gotten better at it. It’s having the village. It’s having constant reminders of people that are saying, what have you done for yourself? That ask that question. I work out. I’m a CrossFit junkie, so I work out three or four times a week. That’s my hour that is not about nobody else but me, nobody else. Take whatever time it is. You gotta carve it out. Even if it’s a 10-minute bath in the bathtub by yourself. There are days, trust me. If that’s all I got, I’m taking it. It is so important. You can’t, I mean, it’s so cliche, but you can’t drink from an empty cup. And you can’t, you just can’t replenish that person that you’re taking care of if you’re empty. So you have to find ways. And what works for me isn’t gonna work for everybody. But whatever your passion is, or if you like to read and escape or you like to run or whatever that is for you, you just have to make it a priority to do that. Can you do it every day? Not always, but do it a couple times a week.
[00:39:04] Call in favors, call in your friends. Hey, you know what? It’d be great if I could just go to the store by myself for an hour. Or whatever that is, you know, those little luxuries. So it is just about reminding yourself. And now Easton’s old enough where he can vocalize. Mom, you seem a little short today, are you okay? You know, what’s going on? And so I know when I start to affect him. And that’s when I kind of have to pull myself back in and say, okay, he’s picking up on what I’m laying down. He’s gonna call me out. It affects them, whether they acknowledge it or not. Kids are smart.
[00:39:44] Carole: What is accessibility to you? And to Easton?
[00:39:48] Jennifer: I’m so glad you brought this up. It is something that is, I’m sure you’ve heard before, very frustrating. It’s education and trying to remember that people that are neurotypical and have never had to deal with somebody that has a disability, accessibility is it’s not something that they think about. It’s not that they’re being insensitive.
[00:40:08] It’s just that they don’t know any better. Now, the only exception to that in my eyes is parking in a handicap spot. When you don’t have a handicap tag and you know it’s wrong and you do it anyway. So it’s about education. And yeah, I’m that person that’s gonna call you out. There was a lot of retraining to do at this private school I went to. Even when Easton was in pre-K and at the public school, it’s like, hey, where’s your tag? Well, I’m just running in for a minute. I just gotta drop my kid’s lunch off. Really? Where am I gonna park? There’s a lot of education, but accessibility is just being able to access the same buildings, facilities, programs, whatever, as anybody else, despite the disability. Do you have enough parking spaces?
[00:40:52] One of the great things about the school Easton’s at is they didn’t have a path from the school out to the basketball court and they laid one down. So now he’s got a concrete path that he can get out to the basketball courts. Playgrounds are a huge thing. I’m in the middle of working on a project right now with the city of Bradenton and Rotary Clubs of Manatee county.
[00:41:12] We’re building an accessible playground. Because there’s not a public one in the entire county where kids can play side by side. It’s things people take for granted. And I have to tell you, when I started dating my husband and he met Easton, he said, I have to look at things differently than what I used to look at.
[00:41:30] Now, I go and say, okay, where are the handicapped parking spaces? Is there a ramp? Do we need a ramp? Is there enough room? How is he gonna get to that? Is there an elevator? There’s so much that I think about that I never used to think about because I didn’t have to. It’s not a matter of inconsideration. It’s just it’s you don’t have to.
[00:41:51] So he said it really opened his eyes and now he looks at everything through accessibility. And so it’s just a matter of training people, you know, how are you gonna take your kid to play on a playground?
[00:42:02] Carole: So Jennifer, I’m trying to imagine the playground that you’re building. I have a little bit of an imagination and I have seen special swings and such. Can you describe what does it mean to have an accessible playground?
[00:42:19] Jennifer: Logistically speaking, it’s a ground covering that children in wheelchairs, walkers have gait challenges, mobility issues, that it’s not something that’s going to hamper them. So it’s not mulch. It’s not chopped-up tires. It’s not Astroturf that gets wrinkled.
[00:42:37] It’s something where they can actually physically get on. It’s ramps connecting all the pieces of equipment. It’s the ability to have a place to put his wheelchair and transfer over so he can go on a slide. Having the ground covering being appropriate when he gets down there. It’s having little hidey holes for those autistic children that just want a little dark place where they can go hide and hang out.
[00:43:00] It’s the kids that have sensory issues that they have things they can touch and they can feel, and they can make sounds with, and they can do things with. They can play on a playground side by side with neurotypical kids. And it’s not any different for them. They can find a way to do it. They have what’s called a generational swing, which is you put your kid on a swing, and then there’s a swing for the mom or the dad facing them. And it looks almost like a seesaw, but you swing. And so you’re facing each other and the mom or the dad’s doing the pumping, but you’re swinging together facing each other. And then of course, there’s the swings that you just wheel the wheelchair right up on and lock ’em in and do all of that.
[00:43:40] So there’s so many different things that go into that, that not just with kids that have mobility challenges, but there’s so many different types of disabilities that are out there or differently-abled children, be it autistic or Down syndrome, or, you know, multiple sclerosis or any of those types of things. That a kid can go to a playground that’s been adapted for them and they can play like any other child that has access to any other playground.
[00:44:11] Carole: Am I wrong to assume that the idea here is that children that are neurotypical can have at it as well.
[00:44:18] Jennifer: Absolutely. As a matter of fact, that is what is encouraged because most neurotypical children do not have the opportunity to interact with children that are differently-abled on a regular basis. And let’s face it, that’s how children learn is through play. That’s how they learn. So if I’m playing side by side with somebody that’s differently-able than me, I’m learning from them. I am exposed to something that I normally wouldn’t be exposed to. And that’s a great thing. Now there’ll be a playground that Easton can go to with his friends and we don’t have to worry about what’s Easton gonna do when we get there.
[00:44:55] We want to encourage that intermingling and that socialization of exposing the differently-abled and the neurotypical to each other. Because they can learn so much from each other. And as children, we need to embrace those differences and teach them that it’s okay to be different. And it’s okay to have friends that are different. So that’s where the encouragement, we want them to play together.
[00:45:19] Carole: How rare is it to have these kinds of playgrounds? It seems like it should be part of the ADA for every county to have a playground as you described. But I have a feeling that’s not what is reality.
[00:45:34] Jennifer: Most of the ADA laws come into effect with accessibility into a structure, parking spaces, bathrooms, those types of things. Playgrounds just don’t really fall into that and have never, and because most playgrounds are either owned or managed by a city or a county, which is government, the funding to convert the playgrounds that exist now into an accessible playground is excessive.
[00:46:06] And so that’s not something that they’re willing to do, and we’ve got a structure that’s standing and it’s just fine. So why are we gonna change that? So the funding just simply hasn’t been there to make that happen because it is an expensive process. But it’s necessary. I mean, I think every county should at least have one that is public, that all kids can go to.
[00:46:27] And it’s such a game-changer. It’s just that the funding’s not there because most of it is on government property. And unless you get an organization like Rotary that comes along and says, hey, this is our purpose. This is what we wanna do. This is the money we’re gonna work with you with, will you let us put this playground on your land?
[00:46:48] And then will you manage it when we’re done? And people just are not taking the initiative to make that happen. It is becoming a little bit more common. As a matter of fact, the playground equipment company we’ve been working with actually has an adaptive specialized program. They have a whole division now that’s for adaptive playgrounds.
[00:47:07] We did the research. We brought in physical therapists and occupational therapists. And let them look through the books and said, have at it, if you could build a playground for all your patients and clients, what would it look like and why? And what would you not put on there and why? And so we did the research, we did it all.
[00:47:29] Carole: So you started from scratch, it sounds like.
[00:47:32] Jennifer: We did. When we moved back here, my brother has a son that is literally six weeks younger than Easton. And my mom wanted to take her grandkids to a playground to play. And there was not one here that they could play on together. So she approached the county. And got the runaround for a really long time.
[00:47:51] And then I was president of my local Rotary club and I invited my mom to come speak about it. They all knew Easton. At that point in time, he was very young. And they embraced it. And then we approached all the other Rotary clubs in the county and they said, heck yeah, let’s do this. We’ve gotten a lot of community support.
[00:48:10] We’ve gotten the support of the city government. It’s gonna be at a city park. We visited some of the accessible playgrounds around the state, just to kind of get an idea of what they did. It wasn’t just me. My mom was huge in this, but you know, the Rotary clubs of Manatee county formed a 501(c)(3) called Rotary Suncoast Playground Projects.
[00:48:30] And they are the ones that have worked tirelessly for the past six years, cutting through some of the government red tape and then having to switch over from, you know, one entity to the other and they’re the ones that have made this happen. They put the Rotary name behind it, and then they put the Rotary commitment and integrity behind it and just plowed on through.
[00:48:52] And it’s been amazing. I’ve just kind of sat in as a consultant, being mom of Easton and my mom’s dream to be able to have a playground for abled and differently-abled kids. I hoped to make that happen.
[00:49:07] Carole: Is there anything that I haven’t asked you that you would like to talk about?
[00:49:12] Jennifer: I just think that it’s important that people remember that people that are differently-abled are people and that it is a different world.
[00:49:21] And I just, I wanna encourage people that are the caretakers and the moms and the dads and the people that have to deal with the ongoing struggles. I just wanna encourage people to get that village, use those resources, take care of yourself for goodness sake. Just take care of yourself. And realize that every day is new.
[00:49:42] And I just wanna encourage people just to keep going and keep their eye on the prize. I mean, like I said, I wake up and I look at that little face every day and that’s what keeps me going, is just knowing I’m doing my part.
[00:49:58] Carole: Thank you for speaking with us and sharing your wisdom and just opening up your life to us all so we can learn so much from you and Easton.
[00:50:08] Jennifer: Well, thank you very much for having me.
[00:50:11] Carole: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends.
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