By Katerina Alexopoulos
Medill Reports
The month of March is National Developmental Disability Awareness Month. Krystal Romero, Daniel Steele, Tina Mathams and Matt Raekelboom are community advocates for autism and ADHD. They discuss their experiences, struggles, and how they bring awareness not only during March but every month of the year.
Video transcript:
Katerina Alexopoulos: HELLO AND WELCOME TO MEDILL NEWSMAKERS. I AM KATERINA ALEXOPOULOS.
THE MONTH OF MARCH IS NATIONAL DEVELOPMENTAL DISABILITY AWARENESS MONTH. RECENT ESTIMATES IN THE U.S. SHOW THAT 17% OF CHILDREN HAVE ONE OR MORE DEVELOPMENTAL DISABILITIES. SOCIAL MEDIA ALLOWS MANY TO BRING AWARENESS TO THESE DISABILITIES, INCLUDING AUTISM AND ADHD. AUTISM REFERS TO A BROAD RANGE OF CONDITIONS CHARACTERIZED BY CHALLENGES WITH SOCIAL SKILLS, REPETITIVE BEHAVIORS, SPEECH AND NONVERBAL COMMUNICATION. ACCORDING TO THE CDC, AUTISM AFFECTS 2.3% OF CHILDREN IN THE U.S. ADHD STANDS FOR ATTENTION DEFICIT HYPERACTIVITY DISORDER. CHILDREN WITH ADHD CAN HAVE TROUBLE PAYING ATTENTION, CONTROLLING IMPULSIVE BEHAVIORS AND BEING OVERLY ACTIVE.
ACCORDING TO THE CDC, ADHD AFFECTS 5% OF CHILDREN IN THE U.S.
KRYSTAL ROMERO, A MOTHER OF FOUR, HAS TWINS WHO WERE DIAGNOSED WITH AUTISM AT THE AGE OF 2.
Alexopoulos: So, what has been one of the biggest struggles you’ve had as a parent? And how did you overcome it?
Romero: The biggest struggle I’ve had as a parent was the communication. And I still do. So, in the beginning, I felt like I didn’t understand my boys and they didn’t understand me. And that, for me was the hardest thing because they are considered non-verbal, and they communicate through other aspects that I did not know and they didn’t know. So, the hardest thing was the communication barrier. But once we started therapy, that helped now through therapy. The first thing we learned was sign language, and that was how we first started to communicate was signing. And at the beginning it was hard, but that was the first time they were able to tell me “eat,” or they wanted more, they were, they would say “water,” you know. I was just like, oh my gosh, that was the coolest thing in the world for me, and that was at 2 years old. So, it’s a hard thing as a parent you’re like, “Oh my gosh, my kids can’t tell me those little things.” So that was the biggest thing.
Alexopoulos: I’ve seen your social media account. How do you raise awareness through that?
Romero: So, the way I raise awareness, I just share the boys’ milestones, like I share pictures, I share videos. I also record videos talking about not only the good stuff but also the hard stuff. And I show that no matter what, I’m not giving up on the boys. Even though they’re autistic, they still have the ability to learn no matter how long it takes. So when the boys were in the beginning, when my social media, I remember that I would talk about them not calling me mom and how I wanted that. Sometimes we take those little things for granted, something so little like that, but it was like, the boys were already 3 years old and they didn’t call me mom. And then the first time they called me mom, I shared that. And it was like, I didn’t give up on them like I knew that they would come, so I was able to share that.
Alexopoulos: And what advice would you give to a parent who is struggling right now?
Romero: That it’s going to be hard, but it’s going to be OK. And like, you’re going to have a lot of hard days, but you’re going to have a lot of amazing days.
Alexopoulos: My last question is, what is the message you would like to tell the world?
Romero: Be kind to people that don’t seem they’re normal. Normal is weird you know now. And teach, teach your children to be kind.
Alexopoulos: DANIEL STEELE, A SPECIAL OLYMPICS GOLFER, TALKS ABOUT HIS JOURNEY WITH AUTISM.
Alexopoulos: I saw that you have been preparing to participate as a golfer in the Special Olympics 2022. Do you want to just tell me a little bit about that experience?
Steele: I started golfing back in 2020 in May, when coronavirus was going on. I enjoyed golf, it is a fun sport.
Nadja Rivera speaking on behalf of her son Daniel Steele: And he never played golf ever in his life. All the golf he knew was through television. And, we look for the right fit as, you know, cause this is a very tough sport and not every, anybody could have the ability to help him out training, etc. So we found the right trainer (his daughter has autism). This was supposed to be a one-time lesson just because he said, “OK, I wanted to learn.” He didn’t know that he was going to be so good. It’s so short time, Special Olympics, the kids, they usually train for many, many years before getting to the level he is right now.
Alexopoulos: Congratulations, that is huge. Are you excited?
Steele: Yes.
Alexopoulos: What have been some of the struggles you have had over the years due to your disability?
Steele: Yes. I, struggle to make friends, but I’m pretty much keeping an eye on my interest in Instagram.
Nadja Rivera: So since you started Instagram, it’s been better?
Steele: Yes.
Alexopoulos: Do you feel like Instagram has brought positivity and people commenting positive things on your post or sending you positive messages?
Steele: Yes, I do. Sometimes I need to be careful not to be friends with everybody, sometimes they are crazy.
Alexopoulos: So, I love that you, on your Instagram, you talk about raising awareness and acceptance. How do you do that?
Steele: I show people I can do anything. I always do on my Instagram what I like, you know, I show on my new post. I want to show everybody how my autism is not a disability.
Alexopoulos: What advice would you give someone who is struggling with autism or another disability?
Steele: Nothing is impossible. If you work hard, you can accomplish many things.
Alexopoulos: What is your dream? Is your dream to continue golfing for the rest of your life? Do you want to do some other activity?
Steele: I want to become a professional golfer.
Alexopoulos: What is the message you would like to tell the world about autism about yourself?
Daniel: We are all made by God, it makes me special. And I can do anything.
Alexopoulos: TINA MATHAMS, HAS ADHD AND SO DOES HER SON.
Alexopoulos: Tina, could you please talk to me a little bit about your journey with ADHD?
Mathams: My son got diagnosed with ADHD and autism. And when I was learning about ADHD because I knew a little bit about autism, but I didn’t know about ADHD. So I started learning about it, reading everything, watching videos, and then I started realizing that a lot of the stuff I was writing was exactly about me. And yeah, I just went and got assessed from there and got diagnosed.
Alexopoulos: As a parent, how do you support your kid who has ADHD and autism?
Mathams: I just need to also work on myself to be able to help him. And what I mean by that is he does a lot of stuff that will trigger something in me, whether that’s due to my ADHD or something else. So I need to work on myself to be a lot more understanding and patient as well; so I can then help him because the more triggered I am and the more impatient and cranky, the less I’m going to be able to help him because I’m just not going to have that energy. So I make sure that I’ve got that energy to be able to help him.
Alexopoulos: What have been some of the struggles you’ve had over the years due to your disability, and how did you overcome those struggles?
Mathams: I’ve had a lot of struggles through school and through socializing, staying focused at school is a big issue, and sort of getting through assessments and tests and things like that. And then, socially, just not knowing how to act around friends and people that I meet and things like that. And I just had to overcome it because I didn’t know why. So I just had to overcome it with a lot of coping mechanisms and strategies that I sort of unknowingly put in place just to help me.
Alexopoulos: And you talk a lot about schools and education. Being someone that has dealt with ADHD even maybe without knowing it and having also a kid that has to deal with it, what would you change in the school systems?
Mathams: I would absolutely change the way that kids learn. We know that kids learn all in different ways, just like adults do, we all work in different ways and learn different ways. And I just wish that we could change some kids’ need to learn outside. Some kids need to stand up. Some kids need to fidget and move around as they learn. And I wish that they wouldn’t send homework home because when it comes to things, especially ADHD, we need to go home and rest and do things that we’re interested in because we may not be interested in what is being taught in schools. So to then send more schoolwork home is really, really difficult, especially for the kids that have ADHD. So those are the things that I would change.
Alexopoulos: And then my last question is, what is the message you would like to tell the world?
Mathams: I just would like to say that we need to bring more awareness to neurodivergent, you know, especially ADHD. I feel like something like autism has been out there for a little while, but ADHD is in an emerging space, you know, being spoken about and things like that. So I just wish that there’d be more awareness and more understanding as well. So definitely in schools and workplaces.
Alexopoulos: LASTLY, MATT RAEKELBOOM, USED HIS DIAGNOSIS TO BUILD THE PLATFORM A JOURNEY TO ADHD TO HELP OTHERS.
Alexopoulos: Could you please talk to me a little bit about your journey with ADHD?
Raekelboom: Absolutely. So one thing that definitely happened to me when I was younger was something that happened to a lot of people. I have the very, very generic male ADHD story where I got diagnosed the second I laughed too loud in class and I got instantly put on medication. Of course, it was a good thing and bad back in the ’90s, when I got diagnosed, it was, you know, it was the only thing that they knew what to do was to put people on medication, give them the special treatment that they were looking for, little things like that. But I believe the reason why I’ve even become who I’ve become today is because I went through the generic going through the hatred that most people with ADHD have gone through in their lives, not even necessarily hatred being shown towards me, but the hatred that you develop from seeing a classroom that wasn’t built for you, and having friends that don’t understand and a family that doesn’t know how to help you. And it ends up, it ends up fostering, not only a very frustrated culture of people, but also a very quiet culture. I never wanted to talk about myself. I never wanted to talk about my symptoms. I never truly knew I had any. I thought I was a freak for a lot of my life. And I think that’s where a lot of the difficulty amongst many people, even today with ADHD, comes into play.
Alexopoulos: Absolutely. What are the proudest moments you have achieved?
Raekelboom: The most amazing achievement that I’ve had so far is actually building the Journey to ADHD program. In case you don’t know yourself, Journey to ADHD is an actual platform that I’ve built; it’s not just a name that I use online or anything like that. And we’ve actually built a platform to help people with ADHD, understand their brains and thrive with their brains a little bit. Essentially, without sounding too salesy about it, we give people all of the tools to tell their journeys through ADHD. And we have, in a very short amount of time, we have an unbelievable amount of members. Everybody has written us the most glowing reviews, and I put my heart into building it in the dark for, I think, seven months before anyone even knew what I was doing. And the fact that we’re creating success, we’re making an impact, it really has changed my life and that’s got to be the best thing I have ever done.
Alexopoulos: How do you raise your awareness through your social media accounts?
Raekelboom: Through my social media accounts, the one thing that I love to do is not hop on any trends. I’m not trying to, I’m not trying to necessarily be entertaining. But the thing that I have found personally that has really helped a lot of people is I tell people the why a lot of people with ADHD, you know, you get told to do something as a kid or as an adult. And a lot of people have a different type of processing in their brain than others do. And we don’t necessarily understand things without understanding the why. And I believe that the way that I do that is a lot of the series that I do with the Let’s Talk about It series, where I teach people how to talk about their ADHD and raise the awareness that it’s OK to feel this way.
Alexopoulos: What advice would you give someone who is struggling with their own disability?
Raekelboom: Understand that there is an answer. I know I said this earlier, but I would love to reiterate this. I want this to haunt everyone with ADHD in dreams. Truthfully, there, there is an answer to why you feel a certain way. When your emotions go everywhere, when you feel like you can’t get out of bed, when you just can’t do something, that one day when you have all of this energy and then all of a sudden it drops to nothing. There is an answer. And by understanding this, you have the ability to look this up further and to learn more about yourself, and truly solve the issue.
Alexopoulos: So, what is the message you would like to tell the world?
Raekelboom: You are not alone.
Alexopoulos: MANY COMMUNITY ADVOCATES STRIVE TO BRING AWARENESS NOT ONLY DURING THE MONTH OF MARCH BUT EVERY MONTH OF THE YEAR.
Alexopoulos: THANK YOU FOR WATCHING MEDILL NEWSMAKERS. I AM KATERINA ALEXOPOULOS.
Katerina Alexopoulos is a Video and Broadcast graduate student at Medill. For any further information, you can email her at katerinaalexopoulos2022@u.northwestern.edu.
