I Don't Know How You Do It

From NICU Nurse to Autism Advocate, with Candice Hartford

September 26, 2023 Jessica Fein Season 1 Episode 37
From NICU Nurse to Autism Advocate, with Candice Hartford
I Don't Know How You Do It
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I Don't Know How You Do It
From NICU Nurse to Autism Advocate, with Candice Hartford
Sep 26, 2023 Season 1 Episode 37
Jessica Fein

How do we go from shock, denial, and overwhelm to being a community leader and a guide for others traveling a similar path?

Meet Candice Hartford, a compassionate NICU nurse who navigated an unexpected personal journey into the world of autism. Not only does Candice work tirelessly to nurture fragile, premature babies in the Neonatal Intensive Care Unit, she seamlessly transitioned into advocating for her twin autistic boys, Keaton and Grady. 

The diagnosis of autism can unleash an avalanche of emotions for parents, from shock and denial to fear and uncertainty. Candice  candidly shares her own rollercoaster ride of emotions, shedding light on the anxieties and apprehensions that accompany such a diagnosis.

Drawing strength from her own experiences of managing their unique challenges, and her younger, neurotypical daughter Isla, Candice made it a mission to bridge the gap for families in similar situations. She founded Raising Harts, an organization nurturing families with autistic and neurodiverse children, emphasizing mentorship, workshops and community growth.

 In this episode you'll learn:

  • How it's possible to sit in the fear and then go along for the ride
  • Why finding others on a similar path can restore joy
  • When you need to delegate and tap out
  • What it means to shift your entire perspective
  • And so much more...

Learn more about Candice and Raising Harts:

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells

Show Notes Transcript

How do we go from shock, denial, and overwhelm to being a community leader and a guide for others traveling a similar path?

Meet Candice Hartford, a compassionate NICU nurse who navigated an unexpected personal journey into the world of autism. Not only does Candice work tirelessly to nurture fragile, premature babies in the Neonatal Intensive Care Unit, she seamlessly transitioned into advocating for her twin autistic boys, Keaton and Grady. 

The diagnosis of autism can unleash an avalanche of emotions for parents, from shock and denial to fear and uncertainty. Candice  candidly shares her own rollercoaster ride of emotions, shedding light on the anxieties and apprehensions that accompany such a diagnosis.

Drawing strength from her own experiences of managing their unique challenges, and her younger, neurotypical daughter Isla, Candice made it a mission to bridge the gap for families in similar situations. She founded Raising Harts, an organization nurturing families with autistic and neurodiverse children, emphasizing mentorship, workshops and community growth.

 In this episode you'll learn:

  • How it's possible to sit in the fear and then go along for the ride
  • Why finding others on a similar path can restore joy
  • When you need to delegate and tap out
  • What it means to shift your entire perspective
  • And so much more...

Learn more about Candice and Raising Harts:

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells


Jessica Fein: [00:00:00] Welcome. I'm Jessica Fein, and this is the I Don't Know How You Do It podcast where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey and I hope you enjoy the conversation. Welcome back to the show. I'm excited to introduce you to my guest today, Candice Hartford, who's a NICU nurse. I've had so much experience with nursing over the years for my daughter, primarily, and I know what a gigantic difference nurses can make, not only for the patient, but for the whole family.

As a NICU nurse, I look at Candace and I say, I don't know how you do that. But there's so much more to her story. Seven years ago, Candace and [00:01:00] her husband, Kenny, had twin boys. Keaton and Grady, who are both autistic. Shortly after that, they welcomed their daughter, Isla, who's neurotypical, to their busy family.

When the pandemic hit, like everybody else, the boys usual activities, social engagements, therapies, were all stripped away and their routines were drastically changed. The whole family was struggling with isolation and their need for community grew. Candace couldn't find the community she was looking for.

So it became her mission to create the community she wanted. She was looking for a place where there would be safe experiences for her kids to just be kids and where she could just be a mom. Out of that desire, she launched Raising Harts, which is an organization that supports families with autistic and neurodiverse children through mentorship, workshops, and inclusive programming.

It is my pleasure to bring you Candice.

Welcome, Candice. I'm so glad to have you on the show. 

Candice Hartford: Thank you so much for having me. It's an honest to God honor. I'm so happy. 

Jessica Fein: You know, it's interesting because we're talking about, I don't know how you do it, and I think there are a couple of things in your life, at least a couple that I know about anyway, that people probably look at you and say that.

And one of them is the career you've chosen, which is you are a NICU nurse. Right. So tell us a little bit about that. What made you decide to pursue a career as a NICU nurse?

Candice Hartford: It's, it's definitely something that I think, you know, it's a calling, it's a niche. It's something that you, either you love or you don't love.

I actually did not anticipate being a NICU nurse initially. I wanted to be a midwife initially. I wanted to be someone who brought babies into the world. I just loved the whole idea of pregnancy and being a part of that amazing. experience for moms. And so I went [00:01:00] into nursing school to go to labor and delivery.

It wasn't until I got to nursing school that I had a labor and delivery rotation and it was great, but I noticed this group of nurses and doctors that would come in during the deliveries and they, they were working with the baby. And I just kept gravitating to that. I have anxiety. So I used to be really anxious about the thought of being in an ICU, like, Oh, I could never do that.

But that also is something that I. It throughout my life have always said, well, if I'm scared, I'm going to do it. So I decided when the opportunity came in my nursing school, they asked if you wanted to have a rotation in the adult ICU, primary care or NICU or PICU. And I was like, this is my opportunity to be scared and go for it.

So I went, had a whole six months or a whole semester in the NICU and had an amazing preceptor and I never looked back. 

Jessica Fein: It's incredible. And it's so interesting to hear that you're somebody who. [00:02:00] has anxiety and chose in a sense, not despite the anxiety, but because of the anxiety to pursue that. So let's put the NICU nurse on the side for a minute and let's hear a little bit about your family.

Candice Hartford: Yeah. I have three beautiful kids. I have twin boys, Keaton and Grady, who are seven years old. They're about to be eight. And then my daughter, Isla will be turning six tomorrow. And my husband, Kenny. And we live on the South Shore of Boston, and we have a really fun, incredible, different family. 

Jessica Fein: You see so much in the NICU.

And I wonder if, when you are nursing there, and particularly when you were, before you had the twins, did you ever look at the parents? Talk to the parents and, you know, you, you were up close and personal, like more than even the front row to what they were going through. You were kind of on the stage [00:03:00] with them.

And did you ever imagine what it would be like to be them? Was there any piece of you that was like, I get to go home at the end of the day and I don't have these very complex situations that they're going through? How was it for you then, before it was something you could kind of relate to in a more personal way?

Candice Hartford: Absolutely. Absolutely. You know, I think I was naive back then, you know, before I had my own children, it was this blissful bubble of ignorance, I suppose, one of my most favorite parts about being in the NICU is being able to be there with parents during that really traumatic experience when they first are introduced to the NICU, and I like being able to kind of calm them or guide them through that whole process, whether it's the beginning, middle of the of the journey or, you know, they're graduating on, but I really never thought about what their lives were like after the NICU.

I just didn't know what that looked like. 

Jessica Fein: How did you first become aware that your twins might be on the autism spectrum? [00:04:00] 

Candice Hartford: I didn't know until like maybe nine months. So the twins are very different. They were born at 33 weeks, 33 and five. So technically almost 34 weeks, but they were small for gestation.

Grady was more behind physically and, you know, fine motor skills, all that stuff. So he was like slower to sit up, slower to stand. He definitely had some like wobbly gait. So just, I just assumed, um, that they would need some OT and PT cause they were premature, but for sure at the six month mark, I was getting concerned, but I kept being told they're preemie, they have to catch up.

They need a whole full year, but I knew in my gut, it was more than that. So I would say six to nine months is when I kind of. Was getting concerned and then at 12 months at the NICU follow up was when I basically said I'm pretty sure this is what it is and they for sure agreed and kind of got me on the bandwagon of getting prepared to find a physician that [00:05:00] would see them because the earliest time you can diagnose typically is around 18 months 

Jessica Fein: It's interesting because you saw so many babies, I mean you were seeing babies all the time, right?

That's what you did for, for your job. So, I imagine that, that knowing, that gut feeling was probably something you were, Allowed with yourself to take more seriously and that maybe others took more seriously and what I mean by that is there's a certain amount of anxiety that all new moms have, right? But many of us are told, Oh, they're there.

You know, the kid will catch up. But you are coming at it. With a whole different data set, if you will.

Candice Hartford: Yeah, I mean, I fully understood that there were gonna, they were probably gonna have some difficulties, but I really did think that this was something that they could get through. They would just need more support until they got through things.

So it's such a, like, it's such a roller [00:06:00] coaster, you know, in hindsight, it's very clear. But in the moment, I had a gut feeling for sure. And I needed to kind of. Be a good advocate. And I also had the luxury of being able to talk to my current coworkers and my physicians and doctors and just kind of always asking questions, which some parents obviously don't have that.

Jessica Fein: That's true. That's true. And I think that a lot of us don't want to quote unquote bug the doctor, right? We're very hesitant and we feel like we're annoying them or if we're a pest and I use that very personally, right? I'm not. No judgment on anybody else. I'm saying that, you know, to think like, I don't want to bother them, I don't want to bug them, be the pest, because then they're not going to want to give me as much time.

They're going to write me off, right? But it's almost like when you have a doctor in the family, they say, Oh, everybody in the family comes to me with everything. But you went to work each day with all of these people who knew you. 

Candice Hartford: And I had a really good pediatrician. I mean, that was huge. I have a really amazing [00:07:00] pediatrician that happens to also have a sibling who's on the autism spectrum.

And even before we talked about autism or any kind of concerns, she was with me right when they came home from the hospital, you know, she was. Very thorough and listened really. I never felt rushed. I never felt like I was wrong. She really listened and still does. And I find that that's a huge key piece of the puzzle for parents.

If you don't like your pediatrician, find another one. If you're not feeling heard and you're getting brushed off, that's not normal. 

Jessica Fein: Yeah, that's really important for people to hear, I think, because I think we do, if it's not our profession, hold doctors and nurses as kind of like this other level. Right?

And we feel like they know so much more than we do and we're so beholden to them. So how did this evolve from when you got that official diagnosis? First of all, what was it like to hear that?

Candice Hartford: Yeah, as [00:08:00] much as I knew that it was probably going to be the diagnosis, I still in my mind, I think, thought maybe like a titch of it, you know, like you have that kind of hope of you don't know.

I didn't know anything about autism, to be honest, I don't have any experience with it. And I only know preemies and I don't know, like a six month baby after that, that's not my expertise. So when I sat in the office and heard the words, you know, he has autism. And I remember it takes me back to that literal kind of sick feeling where you're gut punched and the blood is draining from your face, but also at the same time trying to be very calm externally, per usual. And her saying to me, you know, our first goal will be to get into kindergarten. And I'll never forget that sentence, because what does that mean?

Like, what does that mean? Like he wasn't going to go, that wasn't even on my radar that he might not go to kindergarten. Like, I was just really shocked. I only had one twin was diagnosed at the time, whereas now [00:09:00] they're both diagnosed. So I remember going to the car and just kind of feeling like an out of body experience.

And I cried and cried and cried and cried for like weeks. Like every time I looked at him, I cried. And it was because I was. Grieving the life I thought he was going to live. I worried tremendously about bullying and him making friends and being happy. Those were my initial concerns. I wasn't really worried about, is he going to talk?

Cause I assumed he would talk. I was more about like, is he going to be teased? Is he going to be hurt? Is he going to be vulnerable? Is he going to be a victim? All those things kind of close to my heart right away. 

Jessica Fein: Do you still worry about those things?

Candice Hartford: I certainly do worry about the vulnerability. Grady specifically is so easygoing.

He would go off with a stranger probably because he's just a sweet little kid. And he doesn't have a lot of safety awareness, so he tends to run off. But I don't worry as much about him being bullied because I have found actually that people love him. And [00:10:00] the kids that maybe say something inappropriate are little still, and they're just kind of figuring things out.

But. He's, he's well loved in every sense. I still get to see him with his sister's peers and his peers and everyone kind of looks out for him. And that is the ultimate beauty of it. Um, that I did not anticipate. 

Jessica Fein: How long was it? Between that first diagnosis and when your other son was diagnosed. 

Candice Hartford: So, Grady was at 17 months and Keaton was 2 1 2, so 24 months.

And Keaton was something I sought out. I sought out his diagnosis. Because he was physically running circles around everybody. He was jumping out of his crib. He was running early. He was so fast paced. So, he never had any of the PT that... His brother needed, he didn't really have, he had some word, like some sounds and words and stuff, but I also did not know what was normal because I never had a baby before.

So I didn't know what real talking was supposed to look like. So [00:11:00] he was definitely a speech delayed. He was in early intervention just because of his preeminess, which thank goodness. But I knew that in order for him to get any speech services and be able to go to preschool a year early with his brother, he was going to need a diagnosis.

So I actually found a doctor in Boston that had availability to do a neuropsych eval and did give him a mild autism diagnosis. And global developmental delay diagnosis, and it says in the note in there, I still look at it. It says that he would potentially outgrow the diagnosis with sufficient therapy.

So I did actually consider, I wasn't going to tell people about Keaton's diagnosis. I was going to utilize that letter for him, his benefit, but I wasn't going to like, you know, with Grady, I was more, he has autism. I led with that because I didn't want anyone to notice it before. I had a chance to say it.

It was the protection for me, whereas Keaton, I kept his diagnosis close to the best initially, [00:12:00] but as time has gone on, his autism actually is much more obvious, and I don't find that hiding it has benefited anybody in our family. So for us, it was a personal decision to be open about both of their diagnosis, because I feel like they both need the community to know them and to love them, to know that they exist and all the amazing beauty of them as well as the challenges.

Jessica Fein: Was your reaction when you got that diagnosis, which you had sought, different from the original diagnosis? Because now it was not a foreign word to you. It was not a foreign concept. 

Candice Hartford: I was excited because I got the paper I needed. I got the tool I needed to get him sufficient support. So I was excited and proud of myself for pushing for the exam, the evaluation.

And so I was happy to know that He squeaked through in my opinion to get something that was going to benefit him, but it wasn't [00:13:00] necessarily going to be life altering. 

Jessica Fein: Right. I wonder if how much of the excitement was, as you say, what you were going to be able to do for him now. I wonder if the lack of fear was a function of the fact that you had now been living with with autism or if it was because you thought it was going to be mild. 

Candice Hartford: I think a little of both. I saw these people coming in for Grady, like a team of people coming in four days a week, and they came into our house and worked so much with him. I found that I felt like I had support in that, and I needed the same support for his brother. It wasn't soft enough of a call for me to say like, oh, let's just see how he gets by.

Jessica Fein: Right. It wasn't that titch that you referred to earlier.

Candice Hartford: Yeah. And his first words were when he was like about two and a half or a little after, and he never said mom or dad or pointed or anything like that, [00:14:00] but his first words were one through 10. He counted to 10. In the bathtub, and I was like, he's verbal, like I thought that was verbal because as a new mom, you think they can say a word that means they're verbal, and it's actually, as I've gotten farther along, I realized that he can still be nonverbal and still have words, but it's all about how they communicate and can they effectively communicate.

So, Keaton’s actually been considered nonverbal up until more recently. 

Jessica Fein: Well, so what are some of the unique ways in which your children communicate and interact with the world?

Candice Hartford: So it's actually like I have free languages going on in my house quite often. So Grady, who's, I guess is the one that has higher support.

He is fully on speaking. He's never said a word, but he makes a lot of noise and he's really practicing a lot with his mouth and his lips and his tongue. So he's always saying, I, yeah, yeah, yeah. But he mainly communicates with gestures. So that's his [00:15:00] preferred way of communicating. He's actually my most clear communicator in the house.

Jessica Fein: Wait, even more so than Isla? 

Candice Hartford: Yes, yes, yes. I mean, you know, Isla can tell me what she wants, but sometimes it's like, it's just, you know, she's a typical five year old who's very busy and talks non stop, and whereas, like, Grady, I know when he needs something, he's gonna get it. He doesn't really need for much, but if he needs food, water, something wants to go outside.

I mean, he's persistent. He's very clear. He will bring me a cup and like throw it at my face. If I need, if I'm asleep, he'll drag a stranger to the kitchen and get what he wants because. He can actually guide them to what drawer to open and all that kind of thing. We do work with him with an AAC device, which is an iPad.

We used to do something called, um, a Nova chat, but it's essentially like a Peck system or a picture exchange system, but on an iPad. It will open up a lot of opportunities for him to speak to more people than just mom, dad, and his, [00:16:00] you know, little circle in life. Whereas Keaton speaks in scripts. He has something called Gestalt language processing.

Which essentially means that he will memorize, like, a book. He'll read a book, or he'll memorize, or he'll listen to a video, and he'll memorize the words. And he'll use that scripting to tell me what he wants in something else. It's very strange. So, for instance, if, if he stubs his toe, and I say to him, Oh, are you okay?

And I go get him a band aid. The next time he stubs his toe, he says, Oh, are you okay? Instead of saying, I need a Band Aid or I hurt my foot. So he, he realizes that what I said in that moment is what he should say in that next moment. So sometimes when he talks to me, he'll say, Mom's going to stay home.

And what he's asking is, are you staying home today or going to work? 

Jessica Fein: That is so interesting. So have you adapted [00:17:00] your own communication style to meet your kids where they are? For 

Candice Hartford: sure. I mean, Kenny and I are always just trying to, we're learning constantly. So there's a lot of things I didn't do early on that I wish I had, like, I didn't understand how important it was to label, to model, to, to model.

That was a huge thing. People used to say, Oh, just model things. I mean, I didn't really understand, but now I'm seeing progress a lot because if I model with Grady to help him to find the right picture to what he wants, he will tend, he's learning it and same thing with Keaton, and so instead of scripting.

As much, he's starting to actually say typical things. So he's just very literal. Like if I say, how was school today? He says, my school was fun because he was taught to say that not because it was fun. And so I really am trying to get him to say what's really the case. 

Jessica Fein: How do they communicate with each other?

Candice Hartford: Oh my gosh. Well, so they, they've kind of coexisted. Like I see baby pictures and videos where they were always looking at each other. [00:18:00] Um, and Keaton had a like a good period during COVID where he really had very little eye contact. So he kind of regressed during that time and Grady ended up having more eye communication.

Now, they actually communicate a lot with their eyes and they hug. And Keaton will always come up and kind of get really close to Grady. And he gets really up in his face and he goes, yeah, yeah, yeah, yeah. And then Grady will say, yeah, yeah, yeah, yeah back. So they have this exchange. And there's this bond there, but there's actually no, like, literal words.

Jessica Fein: How do they communicate with Isla? 

Candice Hartford: So Isla's, she's, she's the glue, you know, she's the peer model essentially in my house. She is so amazing. I mean, she's only five years old and she will literally bring them to each other. She doesn't see the difference. So she's always up in their face and hugging them and squeezing them and getting them together and they're giggling together and they have a really beautiful [00:19:00] relationship and she understands like.

That, you know, Grady's learning how to, he communicates in different ways, or he talks in different ways. She's having to explain that to her peers, all that stuff, but she has no problem talking with them. 

Jessica Fein: Has the way you relate to parents in the NICU changed since you've had your twins?

Candice Hartford: Immensely.

Immensely. So now I understand that. You know, even if, of course, it's not always autism, but I understand that a 33 weeker who might have reflux is going to have a long road ahead. And even though in my NICU world, 33 weeks is not very premature, it's very premature for that parent, for that child. So it's not even about age, you just never know.

And it's about equipping people with, you know, all the possibilities, I guess. 

Jessica Fein: I'm just personally curious, how young, so to speak, can a baby be? What do you see in the NICU for babies that end up kind of going off and, and [00:20:00] being okay? How many weeks? Is there like a cutoff? Like, well, you, you got to make it to at least X number of weeks.

Is there anything like that?

Candice Hartford: It used to be the 23 weeks was our viability stage. So at 23 weeks and zero days, and now it's more like 22. Just depends on the situation. We can definitely help a baby that's 22 weeks, but you know, um, we don't really have a lot of data yet on how the outcomes are for them.

I've seen 25 week twins go home and have essentially no issues. I never say never, I think babies are miracles. There's no prediction. And that's kind of the thing. 

Jessica Fein: What advice would you give to other parents who have just received the diagnosis that their kids are on the spectrum? 

Candice Hartford: Oh gosh, well I think I would say, like, it's okay to feel all the feelings.

I think it's important to, to be able to grieve those feelings of what you, what you thought that the child's life is going to be, but also in time when you start to [00:21:00] get through that phase, you will see that it's not a death sentence. It's actually a beautiful thing in some cases, in most cases, and what your child is in that moment is not going to be what they are in five years, you're going to be scared.

That's it. You're going to be scared, but take a deep breath and come along for the ride as opposed to worrying about all the what ifs in that minute.

Jessica Fein: Very interesting that you said you had not had experience with this, that you got the initial diagnosis and you cried and cried and cried. And at some point you became a real guide. And a beacon for others going through it. You started this organization called Raising Harts. So I'd love if you could tell us what is raising hearts and what inspired you to start it.

Candice Hartford: It is such a passion of mine. So raising hearts was. born out of [00:22:00] my selfish need to find connection with other parents. And I found that early on, as I was going through both Keaton and Grady's diagnosis and learning so much about all the therapies that were out there or were hard to get, or what was going to work for my children, I guess I was desperately searching for some answers as to what our life would be like.

I wanted someone to kind of help me understand what was to come. And because of. HIPAA, I, I found it really difficult to connect with other parents that maybe were getting similar therapies as me because those companies can't get on information. Even if I threw my number out on a card and said, please call me, you know, like no one was giving our information to each other.

I didn't find that support groups that were at these centers were as helpful because I just wasn't, I didn't want to sit down through a classroom and talk about all the things. I wanted to have a therapy session kind of, I just wanted to have a friend to talk to. And then during the pandemic was what.

Really exacerbated this need. So the isolation is, is so incredible [00:23:00] as your children begin to kind of grow out of that baby phase or that toddler phase. And the kids that they typically, your friend's kids start to kind of outgrow them and you realize like, I can't go to the same playgrounds as you, because it's unsafe for my child, or I can't go to this fair because my child can't tolerate that noise or that transition or whatever.

So you naturally kind of start to isolate. And so Raising Harts is all about bringing families together where we're, it's a non judgmental beautiful, like kind of community family where we all can grow together, learn together. And it's really helped my children make more friends. It's helped my typical child and everyone around me, their typical children really see openly how this is actually normal life.

The life I thought was normal before I had the kids was... So different, it was, you know, my kids are going to do this, you're going to go to this college, you're going to play sports. And that's what I thought life was. [00:24:00] And that's what I'm going to parent. I'm going to parent a child to do all these things.

And then you reality hits and you're like, I want to create beautiful human beings. And I want to make a change in their society, in our environment to accommodate and accept them for them. That's how it changed everything. So that's how Raising Hearts was started. Let's start to be open about this and get people who are desperately isolated and shamed or scared to come out openly that they're child on the spectrum, which I find a lot to say it's okay, like, doesn't define them, you know, and how can we find their best gifts.

Jessica Fein: So you had this idea to start Raising Harts, and as you say, it was born out of your own needs. How did you go from an idea to making it happen?

Candice Hartford: I'm kind of a natural networker, so I always am talking with different therapists and people that were always coming to the house, inside and out, and discussing that I wanted to create a [00:25:00] family group.

And started doing like playdates around my local area for families to come to. And while it was for the kids to be together, it was mostly for parents to connect. Because I wanted to have a place where families like mine could actually go and not be scared to take their child. So I always would go to a place where there was closed doors and, you know, the exits were appropriately taken care of.

So there was no bolting happening. Cause I realized if I'm the one that's walking around, like with my shoulders up like this scared, my child is going to run off. There's gotta be others. And so it started off with little playdates and then I started to reach out to all these different businesses that I wanted my kids to be a part of, like horseback riding, sailing, like challenge rocks, like dancing.

But I couldn't find a class for them. I didn't want to drive for two hours to an adaptive dance class when I have three kids and like, it just didn't make sense. So I just started creating them. 

Jessica Fein: It's amazing. And how did [00:26:00] people respond? 

Candice Hartford: Amazing. I mean, I haven't had anyone say no yet. Obviously, some businesses go all in and we had an amazing experience with a local place called City Arena that had us do something we created called Inclusive Kicks.

And it was adaptive, it was adaptive soccer and it wasn't, we do have some adaptive soccer in other places, but it was literally come and expose your child. Like there's not going to be any real game happening. There are places that have adaptive games so you can enroll them there, but this was like, just come get your kid in the door, get them to maybe kick a ball or be around it.

And then in that same breath, all the parents could really hang out. So all these different businesses, I think we're all excited about, you know, being a part of it. And it, it's grown pretty quickly. So the first year was exhausting in that it was always trying to explain what we were trying to do and always trying to find our people that would support what we're doing.

And now this year, people are like, Oh, let's do that again. Last year went great. Let's do it again. So it's become easier. And so then it kind of evolved from [00:27:00] events to, we are actively working on a mentorship program that'll be launching at the end of this year. And what it is is going to be a Raising Harts mentorship where you can actually either be matched by Raising Harts with another peer parent or you can self match yourself, but it will help to match you online with like someone else.

Maybe it's your child loves World War II and you want to find someone else who has a child that loves World War II. Or maybe you're just newly diagnosed and you're looking for someone who's a couple years ahead of you in a town next door. 

Jessica Fein: That is so brilliant and even though my child's diagnosis and what I went through is totally different from what you're describing, the idea of mentorship Is so powerful and I remember for me when we were coming out of the hospital at age nine with a bunch of medical changes like my child now had a trach and a feeding tube and a ventilator and [00:28:00] all the things I remember.

The day the deliveries came, I was home alone and these moving trucks just kept, huge trucks kept pulling into the driveway and bringing out all of these equipment and boxes and supplies and I didn't know what any of it was. And I thought then in the moment and have thought since, the most valuable thing would have been if there could have been a mom sitting with me who had been through it, who could not only tell me what these things were.

But could also hold my hand and also assure me that even though my child now needed all of these things to live. It was going to be okay and would help me set up that room. I mean, I just thought that would be the single most valuable thing. So again, a wildly different situation, but to be with somebody who's been through it, I think is one of the most valuable things you could offer.

Candice Hartford: And that's what I think we're all craving, you know, whether you're newly diagnosed and you need someone to help you or you having a transition where your child's going. middle school to high school or from high school to [00:29:00] adulthood. We always are going to need mentors. I'm meeting mentors constantly. I'm always looking for people that have had walked in my shoes and, and, you know, that's never going to go away because there's different phases and different transitions with autism and any child, honestly, but it just is going to bring a very personal touch to an experience that before this had been otherwise really alone and scary.

Jessica Fein: Well, you said that you had had no personal experience with autism. I haven't either. Um, and so now as somebody who's really a leader, what do you think are some of the most important messages or misconceptions that you would like people to understand about autism?

Candice Hartford: Oh gosh. It's a great question because I really, like I said, had no idea.

My experience prior was, you know, I had a kiddo when I was growing up in school. We had a really significantly autistic child that. really couldn't handle being in school. So when I heard Grady had [00:30:00] autism, that's exactly what I pictured. And I pictured a child who didn't want to be touched and didn't want to be loved and wouldn't be able to look at me or maybe bang their head against a wall.

I mean, I thought of all these... Probably extreme, extreme cases, and that's absolutely the opposite of Grady and Keaton. They're so loving, they snuggle with me every night, I actually don't even know if I'll ever get them off me, my body. They're typical boys, you know, they're so much more than just this diagnosis.

Grady showed me how life is in such a beautiful way, so I would tell people that I find my children now to be gifts. It sounds kind of cliche, but I see the world so differently, and it's so much more... I don't know, they're not simple, but like, it's just beautiful in a certain way. They teach me more than anything has ever taught me.

How to be more patient, to actually celebrate some of these milestones that they do, and they just do things differently, you know? So it's allowed me, showed [00:31:00] me to be flexible. So I think the misconception that your child, when you hear autism sounds so grave, but there's such a huge spectrum, which I never realized.

It may not even be something that they talk about. It might be something they're proud of. It might be something that is on their application in college. I mean, you just don't know. There's no limits. The limits are what you put on your child. And that's one of the biggest lessons is like, Your fear is what's going to hold you and your child back.

Jessica Fein: I love that. So what do you do with the fear then? 

Candice Hartford: I would link up with other families, link up with other people, like, try your best to make connections with other people like your family. It makes the journey much more enjoyable. Parenting becomes fun again because when you first hear your child has autism, you kind of get thrown into this land of therapy and you're just constantly trying to keep up with all these strangers in your house and all these things and You need to like, you [00:32:00] know, find happiness and change and mold your life and how it should be.

Jessica Fein: So one of the things that I wonder about in terms of you finding happiness is you are a NICU nurse with a very big job. You are a mom of three kids, which under any circumstances is chaotic and all consuming. You are the mother of twins who have autism, and you are the founder of this organization, Raising Harts.

How do you find time for yourself? 

Candice Hartford: So it's been a journey in that. I have... At this point in my life, I have a psychiatrist, I have a therapist. These are important people in my life that I've always touched base with. I found, personally, that I have to take care of myself, of course, before everyone else.

Otherwise, the whole family sinks. So during COVID, that's kind of what happened and I realize now that I need to be able to take time for myself, whether it's to do nothing and [00:33:00] to lay down or to go get my nails done or to buy the shirt or to go out with my friends and to laugh. It's super important. I found, like, my moms that I've gotten close with with Raising Hearts.

They're my crew, you know? I mean, I have friends of all kinds, different kinds of kids, but these are the ones that get what I, what my day is like without having to say anything. So finding that balance has been a journey, and I think I'm getting there. I always am someone who likes to go, go, go, go. My struggle is trying to take a minute and just watch and just see it all happen instead of what's next.

Jessica Fein: Yeah, I relate to that a lot. People must look at you all the time and say, I don't know how you do it. How does it make you feel when people say that to you? 

Candice Hartford: I mean, I guess my first thought is like, I don't know, like, what are my options? I mean, this is my life and I thrive on being a positive person and that's what makes me happy.

I like being [00:34:00] upbeat. Like I enjoy that I've had lots of different traumas in my life and I think that kind of speaks to how I see the world too. I. I have a beautiful family, supportive husband, my sister moved here from Texas, and so she's here. I just feel like I have two directions. I'm gonna go after it and do the best for my kids, but also for me and to make this an opportunity for something wonderful, or I can just completely crumble.

There's really no, for me, in between. You know, I have my moments, certainly, which is normal to like, oh, this sucks. And then I have to move on.

Jessica Fein: And so in those moments of this sucks, when you could crumble, what do you do to turn it around? What do you do to say, this is it and it can be beautiful and fun and great, or I can crumble?

How do you choose the first? 

Candice Hartford: I'm a fixer. So I find how I'm going to fix the problem. So whether that's delegate to someone [00:35:00] else who needs to help me in this. Whether it's, like, family or friend or, you know, or I call someone, I usually need to laugh. I need to get out of the house. Last night, I actually was tired and I was like, told my husband, I'm going to bed at 8.

Jessica Fein: I love that. 8 o'clock bedtime is the best. 

Candice Hartford: You've got a nighttime routine. Like, I'm so just done, like it's been a long week and the kids are like constant and I just need to do a little tap out and it was so nice because I mean it doesn't always work but it definitely was me saying I need to fill my cup and I need to be in a quiet dark room for a little bit and just chill and then I'm, you know, back to myself again today.

Jessica Fein: Did you ever, in the last years since you've been handling all of this and since starting Raising Harts, have you ever thought about leaving work as a NICU nurse? Is that something that you've considered or is it all part of your puzzle? 

Candice Hartford: I went per diem, so at the beginning when the boys were really [00:36:00] fully in their therapy, I was really working like twice a month, so two shifts.

And then when Ila was born, I started working like once a week. So I've been doing once a week and then sometimes twice a week for the last few years. I need it. I find that me leaving my house to go to work is like a vacation. 

Jessica Fein: That is just so great. I mean, I felt that way too, but it's so funny because of course you're like, I’m going on vacation in the NICU.

Candice Hartford: Yeah, it's so true. I always say that, you know, I see the nurses that work that don't really have a crazy life outside of work and they're like, I'm tired and blah, blah, blah. And I'm like, whatever, like you have no idea, but I'm not going to say that. But I do, I enjoy having my own thing. I think it's important for anybody, regardless if it's work or whatever you choose to do.

A survival skill of mine is making sure I had something else. So being able to get in my car in the morning, and I don't care if it was five hour drive or 40 minute drive or five minute drive, it's me in the [00:37:00] car alone with no one else and a coffee and some music. And then I can talk to adults all day and not be immersed in my world of stuff of therapies and what's next and what's going to be and how it's just my break and Now I'll be going to work, um, a couple of days a week.

So that is a new role I'm taking on now. 

Jessica Fein: Well congratulations on the new role. And I must say, the patients and the families you take care of are so lucky to have you with your perspective and with everything you're bringing to them. As are the families who are benefiting from Raising Harts. So you are just leaving little doses of magic in so many places.

And also for the people listening to this episode, I know there are a lot of people listening to this where the story is going to really hit home for them. And if they want to get involved and they want to reach out to you, how do they find you?

Candice Hartford: Awesome. Yes. You can either find us on our website. So it's raising harts.org and it's H A R T S. And then you can [00:38:00] also find us on RaisingHarts. Again, it's H A R T S. And, or you can just find me. So it's Candice, C A N D I C E @raisingharts.org is my email. And I want you guys to know that, like, you're all welcome. We're opening our new space. It'll be in Hanover in Southern Massachusetts, and it'll be opening in a couple weeks.

And what we're going to do here is have two floors. The first floor will be for parents, respite, where you can come have hot coffee, do some emails, work a little bit. And then we'll be having some classes, which I think are... Things that I always wish I could really have, so we'll be having classes on beginning of AAC devices, and how do I work?

How do I help my child with ADHD, or how do I help my child with dyslexia? We'll be doing all sorts of neurodiverse workshops, and then we'll be having sibling and parent support groups. So for, if you have a sibling or a child, that's a sibling of a neurodiverse child, then you absolutely should look into coming to visit us and being part of our sibling support groups are amazing.

It's [00:39:00] called Super Siblings. I felt a huge group of people that are helping to volunteer and an awesome team. Our board has worked really hard. To put all these things together and then the downstairs area has a sensory little area so for the kids to make friends or go down there and there's a game room and it's just kind of a welcome spot.

So we welcome you to come to us. 

Jessica Fein: It sounds amazing. But what about all the people who are listening who are not in the Boston area and are thinking, I wish I had something like that? Is there a way for them to link into everything you're doing, even if they can't come to the space in person? 

Candice Hartford: We're hoping to do some virtual classes.

And I would suggest this mentorship program will be expanding. So that program will be starting launching at the end of this year. And we're going to be Ideally doing Massachusetts first just to kind of pilot it and then it will be moving on throughout So parents from all over the place can find people that they can help they can help them along in their journey 

Jessica Fein: That's so great.

Well, congratulations on all of it You're doing so much [00:40:00] tremendous good and I just am really grateful that you took the time to come share your story with us today 

Candice Hartford: Thanks so much. Thank you so much. Bye everyone.

Jessica Fein: Here are my takeaways from the conversation with Candice. Number one, if you [00:35:00] don't like your doctor, if you're not feeling heard and you're getting brushed off, Find somebody else.

Number two, it's okay to grieve what you thought your life would look like and it's okay to be scared, but take a deep breath and go along for the ride instead of being consumed by all the what ifs. Number three, making connections with other families like yours makes the journey so much more enjoyable.

Number four, find someone who's walked the path before you and can serve as a guide. Number five, Know when to delegate and when to tap out. And number six, it helps to have something that's just yours, whether that's a job outside of the house, or a hobby, or time with trusted friends. If you don't fill your own cup, the whole thing might fall apart.

I hope you enjoyed this episode, and if you know somebody who you think would like it, definitely share it with them. And as always, I'm grateful if you rate and review the show, I'm going to be broadening the topics moving forward. So stay tuned for that. As we bring on experts in the very things that our guests have said have helped them along the way.

What makes somebody resilient? How do we begin things like meditation? So [00:36:00] those kinds of guests will be joining as we continue to hear the personal stories. I'd love to know what you're thinking of the show. Again, please rate it, review it. Reach out to me directly and keep on listening. Thanks so much.

Talk to you next time.