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Thriving on the Spectrum

Thriving on the Spectrum

Images provided by Tracey Hawkins

A Substantial conversation with mom, CEO & Founder Tracey V. Hawkins

For most parents, finding out your child is diagnosed with autism is a challenge. But finding out that both of your small children have autism is a challenge that most are never fully equipped to deal with. As a mother, your greatest goal is to raise your kids in such a way that they will grow and thrive in unimaginable ways. For Tracey Hawkins coming to the realization that her children would ultimately have a different path in life than she and her husband Zack had planned for was a moment that required her to address her biggest fears and tap into her greatest strength. 

Hawkins, a graduate of UNC-Chapel Hill wears many hats. She’s a mother, wife to a busy politician, and now an entrepreneur who has recently emerged into the tech field. Her venture into entrepreneurship is the textbook definition of how innovative ideas hit the market. They come out of necessity and provide a sustainable solution. In this case, the necessity for her was to find a way to navigate an extremely structured schedule with her boys. Their specific needs required routines that were void of even the smallest disruptions. In order for her boys to truly thrive and live life on their terms, they needed the type of balance that would require the same exact routine every single day. Simple for them, but difficult for a parent to track. That is until the light bulb went off in Tracey Hawkins’ head. In her moments of overwhelm, Hawkins began to think of the many other families out there who were probably struggling with a way to manage life with children that had specific needs. Her personal solution was to be extremely organized. With so many people living their lives constantly on the go, she realized that she could reach other parents in need by using technology. She created Thriving on the Spectrum; a tech startup company that develops interactive, digital, therapeutic tools and resources that are tailored to address the unique needs of individuals with autism. Substantial sat down with the entrepreneur to talk about her passion and her entry into the tech space with her new company. 

Photos provided by Tracey Hawkins and zackhawkinsnc.com

SM: Did you have any sort of tech background initially, or did you just kind of see the vision and know that there was a need?

TH: I saw a need. And it really came in at a time that was really hard for James Preston, our middle son who was transitioning at the time to Pre-Kindergarten. I never speak in broad strokes when it comes to individuals with autism because as we say, in the community, ‘If you know one person with autism, you know ONE person with autism’. It is a spectrum disorder for that very reason.  Even within our two boys, you’ll see differences. So, for James Preston, he is a child that thrives in a very routine, regulated environment. He is someone who needs to know every hour what’s going on, so every day he has a schedule from sunup to sundown. He’s not a child that takes well to surprises; unless it’s an Amazon delivery! So he needed that level of routine and a seamless transition into his Pre-Kindergarten class. There were a lot of transitions happening all within one environment. So, new teachers, larger classroom, new peers, new schedule, and he had to get adjusted to it all. It was overwhelming and overstimulating for him. And that level of overstimulation led to a lot of emotional meltdowns and behavioral outbursts. And as a mom constantly seeing your son every day, trying their hardest to find a level of comfort and peace into an ever-evolving environment. It was hard. We had him in his therapies, but how could I teach him what he was learning in therapy and begin implementing in real time?

As he was transitioning, and having these significant challenges of just trying to maintain his demeanor and calmness, I thought, there’s got to be a better way. At this time it was around 2018. And I said, there’s got to be some kind of app or device that’s on the market that could help him understand his emotions and provide him with his therapeutic resources on the go. I remember picking him up from school one day, and it was another hard day for him. I raced home, got him situated, and I just started Googling. Trying to find out, Is there an app? Is there a device? What is it that is currently out there on the market that could really help James Preston?  I couldn’t find anything. And I remember getting upset that somebody hadn’t created this app that can help individuals with autism. Autism is a common disorder now. One in 54 kids are now diagnosed with autism. I thought to myself, ‘why are we still not having the necessary technologies and devices to really meet their needs?’ So I went to bed feeling defeated as a mom, but then I woke up the next day inspired. And I thought, why do I need to wait on someone else to create it? I’ll create it myself. I’m a mom, and I know what my kids need. And I think that this would be something that would be helpful for many kids, not just kids with autism, but kids, and adults that have challenges with that executive level functioning. Those who have challenges planning, or have challenges organizing, all of those things. Then I was able to really kind of start breaking down and thinking, ‘Okay, what is it that James Preston needs? He needs to know his schedule at all times. So why not create a digital version of a visual schedule instead of walking around with a little notebook everywhere we went with these little cards in it. And if we lost one of the cards, or misplaced one of the cards somewhere, you better prepare yourself for an epic meltdown, because his schedule is going to be interrupted. 

For James Preston and Adam they learn through pictures first. And then they’re able to pair that picture with a word.  He knew his schedule because of the pictures. And I thought, I can’t be bound by a notebook and hundreds of different two by two cards all over the house. So I just started thinking, okay, let’s make this digital. Let’s make a visual schedule. I want to be able to track my son at all times. What else is it that James Preston needs? Oh, he also needs to be able to understand his emotions and what he was learning from therapy. I wanted it to really be an extension of what he was learning in therapy and put it into real time. I wanted him to understand and be able to identify those emotions, and then be able to help himself eventually begin to regulate those emotions. I just started thinking like what is it that James Preston and kids like James Preston need to really find that peace within your day, and that’s how I came up with the different features of the app. 

SM: I think you literally just described the product life cycle, in a way that most MBA students can’t do – Market, Need, Product. That said, tell us about Thriving On The Spectrum. We know why it was started, But tell us about the name, and forming the idea, and bringing it all together. 

TH: You’re going to have to excuse me, because I may get a little emotional. When you hear that both of your kids have a lifelong disorder that rocks you to your core as a mother. Even while we were in the process of getting James Preston diagnosed, we started seeing Adam begin to regress where he was hitting all of his milestones, and then he hit 16 months old and he stopped responding to his name, he stopped making eye contact, he stopped speaking. And he would go like two months without saying anything. And then he would say a word. And I just kept talking to him because I knew he could hear me, but it was a matter of breaking communication and being able to respond. So we have never stopped speaking to either of our boys as if they were just me and you talking right now. 

But hearing that James Preston had received his diagnosis and then seven months later, Adam got his, it took the wind out of me. And at the same time, Zach (my husband) was running for North Carolina House. I was trying to balance this, and trying to be there for my husband, and for our family. But I’m also trying to make sure I’m managing the boys, getting them set up, getting services in place, and feeling this bit of guilt and shame as a mother that I had done this to my child, like I had made my child like this. Really taking on a lot of shame and guilt about the blessings that made my kids so unique, but I couldn’t see it as such in the beginning. And as I began opening up to more people that my boys had autism it was helping me in my own journey of parenting. I think within our community, I felt like there weren’t too many families of color that I could really identify, which made me want to kind of keep within my bubble, and just be like, okay, we’re not going anywhere. There were a number of times that I had to leave a grocery cart to the side and just race out because they had a melt down and I’m embarrassed and don’t know how to handle it. I realized, ‘We can’t do that forever’. And the more I began opening up about our kids and what makes them different and unique and special, I began learning from other parents that were also parents to kids with autism. 

The more I opened up, I started being connected to other parents of color, and just really seeing parents of color and just parents in general, I began noticing other families that were there who were thriving. They were living their lives, they were making the necessary modifications that they needed for their kids and their disorder. But they weren’t locked up in a house like I was. I needed to see other examples of parents and caregivers thriving while having kids with autism. And then it just kind of came up like, you know, ‘We’re Thriving on the Spectrum’. Every day is not a great day, you have challenges just like any other family, but through it all, We’re thriving! We’re not going to be locked up in a house. My kids won’t be denied being able to interact with other kids. They’re going to learn that it may take them a little longer, but we’re going to get there. And when we do, we’re excited. In our house, we celebrate every milestone. The smallest of milestones, we are having cake and ice cream, popsicles. If Adam put three words together – it’s a birthday style celebration!

SM: I just want to say, that is amazing and I commend you for saying, “I’m going to take charge of this. I’m going to figure this out”, and then do so in  such a tremendous way. I can’t even imagine how that feels. Tell us how Thriving On The Spectrum works. Talk to us a little bit about the technology in general. 

TH: When Zach became elected, we started thinking about how this is bigger than just our family. We’re essentially a vessel. And we just truly believe that, for us to keep our kids’ diagnosis, secret and under wraps, how is that helping other kids with autism in the state of North Carolina? Especially other black kids with autism in the state of North Carolina. We really kind of sat with that for quite some time. And I was like, you know, we’re really doing a disservice to not just our boys, but other kids across the state. By having this platform to really be able to advocate and ensure that all kids within the state are able to receive the same resources that our boys had. And then I was able to really say the word autism, because for the longest, I wouldn’t even say it. It was always just developmental delay, or sensory processing disorder, I could handle those words, but not autism. So eventually as I started connecting with other parents, I was able to really say and appreciate the fullness of the disorder. I reached out to an advocacy group, here in the state, one of the largest advocacy groups for families with autism. And I said, ‘Hey, I have two kids with autism’. I heard how they were doing a really good job with connecting families to resources, and really navigating them through this whole diagnosis. I knew I couldn’t do it by myself, and I’m all about a village – it truly takes a village to raise a child, especially a special needs child. I was trying to build my village. And the woman on the other end, said, “Good luck. And be thankful that you’re not the mother in North Carolina that has 5, because there is such a thing and she exists”. And she says realize you’re not going to be able to do it all. Choose and pick the therapies that you can provide your kids, but sometimes you just have to realize you can’t do it. And I remember sitting on the other end of that call thinking ‘You have met the wrong one!’. So I thought, I’ll be darned if I’m going to allow another mother to hear this. So what is it that I can do with our network and our resources? How can I provide easy tips and strategies for other parents and families that they can begin doing at home to begin helping their kids reach those developmental milestones? 

I started thinking, well, this has to be more than just an app, right? It’s great that we have this app and these are the features, but I really want to be able to provide parents with monthly tips and strategies, and just let them know that there’s a community and that you’re not alone. If I can do it, then so can you. Really just trying to empower others, because it was still helping me along my processing journey – understanding that okay, you can do this. It’s about building your network and finding your village. 

We just started last October, providing monthly newsletters to whoever goes to our website. On the site they can sign up for our monthly newsletter and we provide easy tips and strategies and suggestions for families to do things with their kids. And we have a team of therapists that we work with on an ongoing basis – occupational therapists, ABA therapists, a speech therapist, to really make sure we’re providing good content to these families on a regular basis.

SM:  You hit on something that I’d love to dig a little more into – this notion of under resourced communities, to some degree. There are families that are out there that are struggling with this and may not even know. It’s important to know when I’m going to take my son to see if he has this disorder. What are some of the things you could say to our readers about what they might need to know? 

TH: Early intervention is key. That is something Zack and myself are huge advocates for. At the very beginning when you start seeing those signs, go ahead and start intervening. Especially with a disorder like autism, the earlier that you can intervene, the better to really set that child up for getting those resources to help them along the way of achieving their milestones. So for James Preston, at 18 months, we started noticing his irritability was a bit more extreme than your average two year old or 18 month old. And we would ask families and friends if they thought the tantrums were a bit much.  And we were always told that it could be the fact that he’s a boy, or he could be entering the terrible twos a little earlier than his peers. But then we had that gut feeling like, ‘I don’t know, this is a little more than terrible twos’. He would have these meltdowns over something that for you and I would be very simple. For example, his granola bar would break, and he would lose it. And the meltdowns could last from seven minutes, or 35 minutes, where he is just unable to be consoled. And that’s hard as a mom, as any parent to see your child having this really hard breakdown and not being able to console them. So he started that at 18 months, just having really bad tantrums and then he started hitting himself. 

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Images provided by Tracey Hawkins

We were fortunate to have him around people that were really into child development. And it was his two year old preschool teacher who I love to this day, who called us in for our normal check in parent teacher conference. She said, you know, you really may want to get James Preston checked to see if maybe there’s a bit more there, because his emotions seem a bit big for him and he still seems to not be able to kind of reign in his emotions the same as his peers. 

The evaluation process for autism is not just calling someone and getting an appointment. We started in 2016 and we did not get a diagnosis until 2018. And for each child is different. So for James Preston, I think it was a bit hard to be able to diagnose him until we went and had him treated and tested by a developmental pediatrician and a really good treatment team to do a thorough assessment to see if he did have autism or some kind of sensory processing disorder. Adam was a bit different for me. He was a bit more textbook, like, if you read what autism was, you can kind of look at him and say, okay, for some of his behaviors and quirks, you can kind of pick up on it.  When Adam hit that 16-month time frame he just started regressing. He wasn’t responding to his name, he was kind of in his own bubble.  He stopped speaking, started having some behaviors like hand flapping or making noises, all things that we eventually learned were his way of regulating himself. So when we saw those signs in Adam, and because we knew that his brother had already received the diagnosis, we knew to go ahead and get him tested.

With Adam, it took maybe seven months to get him in, diagnose, and, or assess, and then diagnose and treatment to begin. We went through ‘Teach’ with Adam, and then we went through Durham Public Schools Exceptional children’s program. There is a really good program with no cost that is handled by the city, where they come into your home, and really kind of evaluate your child in their comfort area. And then some of it does have to be within a center or facility. Some programs can be as long as a four month to over a year, on a waitlist., so that was the other thing with Thriving On The Spectrum – I wanted to also be able to help those families that maybe they weren’t quite ready, or wherever they were within their parenting journey, or ability to be assessed by someone, I wanted them to still be able to have some tips and strategies that they could begin doing at home because you just don’t know if they have the necessary resources that are accessible in their area.

SM:  So let me ask, being a minority, and more specifically a black female, do you find it difficult to break into the space? Were there challenges that you had to overcome breaking into this tech space? 

TH: I wouldn’t say they were challenges because I was thankful for having the ability to utilize our network.  I had a girlfriend from Carolina that had a software engineering background, so I pulled her in the very beginning. She really kind of set me up to be able to start interfacing with various developers, making sure that I had the layout for the app, and just really kind of held my hand through that process of being able to engage with the tech aspect. As with everything in research, you know that you have a deficit. This is not my field, I have a psychology background. So going into this space of business and technology was like, wait, this is not me. But I knew to utilize the networks and resources that I have. So I pulled on my friends, the Carolina alumni network, I was like, “Hey, I’m looking for this. I’m trying to do this. Does anybody have any recommendations?” It’s amazing the connections that you can make through networking.

SM: What’s next? What is on the horizon for Thriving On The Spectrum? And what are some things that you want to see happen in the coming years?

TH: We are in the midst of our crowdfunding campaign, and our goal is $55,000. We were able to begin development of the app, so we have a clickable prototype. We just had a really exciting opportunity with some news coverage from Spectrum News, and from there had several other large organizations reach out to us. And from that, we also got a verbal commitment from an angel investor, but we are still needing funds so we can hit that $55,000 goal to begin developing the app. We hope to close on our crowdfunding goal by the end of this year and we have friends and colleagues who are hosting virtual fundraisers for us. This is something that is definitely needed, and we have a lot of support and excitement from the community; especially the autism community. We’re ready to begin development and we’re really excited about the resources that we’re able to provide to other families. 

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