My First 19 Years With Cerebral Palsy
In this interview with Drake Box we chat about growing up with cerebral palsy. I met Drake at a local grocery store and later at the outpatient physical therapy clinic I work at. I believe that Drake's experiences will help inspire and motivate parents and provide valuable insight into raising a child with a disability.
Drake Box
Hit Play and Listen to this interview with Drake Box as we chat about growing up with cerebral palsy. This young man is a Big Brother and role model to Kellan. He embodies the principles: Love, Persevere and Achieve. I believe that Drake's experiences will inspire, motivate and give parents raising a child with a disability, some thought provoking insight.
Drake Box was adopted from this Ukraine Orphanage
Drake's first photo
Interview with Drake Box September 1, 2019
What is your Orgin Story?
What are you earliest memories?
Tell me about your relationships with your family and friends?
In your perspective what do you think a child with a disability fears most growing up?
Standout memory at school?
What modifications did you need at home or school?
What are your values?
What are your drivers?
Where do you see yourself in 5 years?
What message do you want a parent to take home from this 20 minute interview today?
Take the time to listen to this podcast. You will not be disappointed. You can reach Drake at DrakeBox1224@gmail.com
Drake and Kellan 2019
Transcript
Marsh Naidoo (00:05):
Welcome to episode one of the Raising Kellan Podcast. The mission of Raising Kellan is to reduce some of the anxiety that comes from facing the unknown. We are here today to share our experience so that parents of children with developmental delay and disability remain hopeful, optimistic, motivated, and educated in the challenges that lie ahead and know that they are not alone. The purpose of this podcast is to create a community from which we can learn and share our diverse experiences, and most importantly, our practical insights. This is a platform for parents to exchange ideas on what's working and what's not. It's a forum to learn about what resources are out there, strategies and tips on how to balance it all. Do you have a time or a money saver? Hey, then let's share it. That's the kind of stuff we want the show to be made of. I am your host, Marsh Naidoo, physical therapist by training, and mom of Kellan, my seven-year-old son with cerebral palsy. You can learn more about our story on raisingkellan.org
(01:26):
As a parent, Kellan's diagnosis at 14 months brought about a paradoxical response. The confirmation brought about the relief of knowing, yet at the same time, it erupted into fear and a whole lot of panic. This volatile mix translated into irrational and irrational thoughts. Rational thoughts were: Will my baby be able to feed himself when he's hungry? Drink when he's thirsty? Will he be able to speak, and make his needs known? Say, Mama or, I love you. Will he be able to crawl, walk, play with his toys? Would he be able to go to the potty by himself?
(02:11):
The irrational thoughts were that would drive me insane with anxiety were would my 14-month-old graduate from college, get a job, get married, and find purpose in life? See what I mean when I say irrational? These were things I'd absolutely no control of. But with the luxury of being five years down the line, I can see how those thoughts nearly consume me. In retrospect, I had to let it go to survive, I had to adapt. I had to change the day-in, day-out, hustle of multitasking my child's routine, doctor and therapy visits, making a living, and keeping up with research on Kellan's diagnosis is unreal. I was at one of those burnout moments six months ago when I had a chance encounter at a local grocery store. Kellan was on his walker helping me check out when the young man behind the cash register ask, Ma'am, I hope you don't think this is personal, but what does your son have?
(03:27):
This is not the kind of question you really wanna hear in a checkout line, but I could see the genuine concern that it was asked with, and I replied back, Kellan has cerebral palsy. The young man answered back, So do I. In that moment, my world stood still. In that instance, I caught a glimpse of Kellan's potential. I didn't quite trust myself to speak to afraid that I would lose it at home. I told Prakash about the run-in and was kind of ticked off at myself because I wished I had asked that young man more about himself. There's always the next time was my husband's reply. Days later, at the inpatient outpatient therapy clinic, I work at the Secretary radioed to let us know that there was a young man coming to the gym area to job shadow for physical therapy assistant or PTA school. As I opened the curtain to the treatment room, Ben, there he was. That young man at the grocery store was standing right in front of me and is actually the reason why we got started on the idea of doing a podcast. That young man is Drake Box, and here he is with us today. Welcome to the show, Drake.
Drake Box (04:53):
Thank you for having me.
Marsh Naidoo (04:59):
There's something I never really got to ask you before, but what prompted you to start the conversation at that store?
Drake Box (05:09):
Well honestly, I already had an idea of what the diagnosis would be with Kellan and I was just curious to know if I was right. So I wanted to ask and probably the most respectful way that I possibly could. And if it was, then I was gonna try to talk more about it, but obviously it wasn't the time and place just to sit and chat. So like you said, I'd hope to seen you again at some point so I could talk to you more about it. And so it was kind of a chance encounter that you worked at the same place that our job shadow, so
Marsh Naidoo (05:46):
<laugh> was. Yeah, I mean, I think there's just some things that you can't really put down to coincidence. For the listeners out there let's tell them a little bit about your origin story. Tell us about Drake Box.
Drake Box (06:09):
Well I'm proudly from the country of Ukraine. I was adopted when I was two by an American family. The orphanage situation in Ukraine was not ideal. I was kind of left in a room by myself because I had a birth defect in cerebral palsy, and they didn't know what it was, so they were just like, Yeah, we're gonna put him off to the side a little bit and see what happens. But actually that probably helped me get adopted because my parents noticed me by myself, and they were kind of like, Well, what about him? And so they visited for a while, and then after a few months they said, Yeah, we want him. So I got to go home as early as possible because of my disability. And when I got to America, I came into a house with four girls and no brothers, so they kind of tortured me a little bit. They knew what they were doing, but I'm thankful for my family. So me being from Ukraine is a big part of my life. And obviously, my cerebral palsy is the reason I do what I do on a daily basis and the reason for my career choice.
Marsh Naidoo (07:22):
What are your earliest memories growing up, Drake?
Drake Box (07:27):
Well, one of the very first memories that I have is whenever I was actually in the orphanage my dad would try to play with me with this red fire truck. And this is how I knew I was a mama's boy, because every time he would try to play with me, I would start crying, but then my mom would hold me and I would be perfectly fine. So that just proves the point that a mama boy is real. And I was a big mama's boy. And then on the plane around home, actually, I remember I was crying over something and then the pilot came out and was talking to me and in Russian and so apparently I shut up for the rest of the flight. When you heard his voice? Yeah, apparently I was quiet for the rest of the flight after he told me what he told me. So you can imagine how long that flight was.
Marsh Naidoo (08:15):
You mentioned your mom. Can you tell us a little bit about her?
Drake Box (08:19):
My mom is one of the biggest parts of my life. She is the reason I, I'm here today along with my dad, but she's the reason I'm here. She is the reason that I wake up every day to live my life, to make her proud of me. She is no longer here with me on this earth, but I know that she's always with me in my heart. So every time I wake up, I think about her and think about what I can do to make myself better in order to make her proud. She was a strong, strong woman and I strive to be her every day of my life.
Marsh Naidoo (09:00):
You talked a lot about your family right now, but tell me about some of your relationships outside your family. And here I'm talking about friends at school people that may be your role models. Tell me a little bit about those relationships.
Drake Box (09:19):
I do have one best friend that I've been friends with for probably a decade, a little over. His name's Blake. We actually used to hate each other in middle school. We actually used to hate each other. And then we started to just started talking, and he actually had a really big crush on my sister. So every time my sisters would come by to pick me up, he would just be looking at us. So then we started talking and we've just been friends ever since. He's like a brother to me. And then another person that I'm really close to and love a lot is my girlfriend, Anna. She's a big part of why I am where I am today. She pushes me 24/7 and makes sure I'm doing what I'm supposed to do, waking up for class and everything, and I can tell that she genuinely cares about me and then that she loves me. So I have to show that exact same amount of love back. So that's what I'm doing.
Marsh Naidoo (10:13):
So Laurie and Anna, those are your rocks. Those are the people that keep you grounded. Okay. If you're not comfortable with this question, just let me know. Okay. But in your perspective, what do you think a child that may have a disability fears the most growing up?
Drake Box (10:34):
Well from my point of view, I was just scared that I wouldn't have regular friends. I wouldn't be able to talk to people and to make genuine friends that actually cared about me not just because they felt sorry for me that I had a disability or that I was in a wheelchair. I was just scared that I wouldn't be able to adjust to society or the place that the places where we live, my needs would overshadow all the things of normal childhood. I was scared I wouldn't have a normal childhood, that I wouldn't be able to do all the things, play sports or anything. So basically I was just mostly scared of not being able to live a normal life. Right. So yeah,
Marsh Naidoo (11:29):
We talked about school there, Right? So what's your standout memory
Drake Box (11:33):
Of school in general or high school or middle school?
Marsh Naidoo (11:38):
Let's try, What about, okay, let's take it down to primary school or elementary school?
Drake Box (11:48):
Actually, in primary school there was this woman, her name is Monica. I can't think of her last name. I forgot her last name, but I obviously should call her Miss Monica. And every time she would come in the class I would always run over to her and send her lap. And then our relationship got so close that I would go to her house after school and spend hours and hours over there. I remember riding a bike down her really long driveway and had a big collection of Hot Wheels cars that I got from her in a suitcase or whatnot. But yeah, I remember her the most outta my primary days and early school days.
Marsh Naidoo (12:27):
You talked a little bit about your sport. What were your favorite sports that you were involved in?
Drake Box (12:37):
I did play, I played baseball. Actually didn't get to play baseball until high school. I never got into Dixie youth or anything. So I loved baseball. I also loved hockey with the same amount of intensity. But we live in Tennessee and there's no ice, so didn't get to play hockey. But I watched it like crazy and I played baseball in high school. Absolutely loved it. And then I got a job, so I decided to quit and focus on my job and my schooling. But I played baseball whenever I can with a group of friends, but I haven't played organized baseball in four or five years.
Marsh Naidoo (13:13):
What were your favorite subjects in school, Drake? What spoke to you?
Drake Box (13:18):
Mostly it was history. I like science, but I'll choose history over any subject any day just because I liked to, I guess you could say, dissect the thought process of the people, why they made these decisions that would change the world's landscape forever, like World War II and the beaches of Normandy and all that. It's just interesting to me to try to understand the thought process of the people that were in charge during that time. -to-
Marsh Naidoo (13:54):
Tell me about your day to day routine. What does that involve?
Drake Box (14:00):
Usually I wake up first <laugh>. Usually I wake up and start to I, I'm supposed to stretch when I wake up, supposed to stretch my legs now. Do I always do that no, I'm gonna be honest, but usually I wake up and then go get some breakfast somewhere after that, I'll probably go to Anna's house and see what she's doing, see what they're up to, and then I'll most likely, usually I go to work. Okay. I'll go to work around 12 and work until ten-nine. And then after that, I'll go back to Anna's house and take me a good nap, and then go back home and work on any schoolwork that I have to do or eat me some dinner and maybe play the PS4 a little bit.
Marsh Naidoo (14:44):
So there you go. Listen, growing up, did they have to be any modifications /accommodations made at school or at home for you, or?
Drake Box (14:55):
I did have an IEP an individual education plan because of my lack of, well, it's not just because of my disability, but I didn't understand English when I first came over here, obviously. So I was in speech classes for that. And then my cognitive ability was kind of had to be tested to see where I was actually capable of understanding and everything. So I did have an IEP up until fourth, fifth grade, maybe. But after that, it was just kind of all normal classes and everything. So yeah, I had an IEP but that's about it. That's about the only modification that I had.
Marsh Naidoo (15:41):
So you graduated from high school and you're now in your freshman year off college, Where to from now?
Drake Box (15:52):
So I'm actually just started my sophomore year,
Marsh Naidoo (15:55):
Excuse me,
Drake Box (15:56):
At actually just started my sophomore year at Dyersburg State I plan to, after I complete my sophomore year, I plan to apply to a PTA program, most likely Jackson State. But I gotta keep my options open. So I'll be looking at places in Nashville and everything. And if I don't get in the spring, then I'll probably take my fall semester off and work and save as much money as I can for the next program that the next time that I apply for that program.
Marsh Naidoo (16:27):
Drake, what are your values? What makes you Drake?
Drake Box (16:33):
I see myself as a very hardworking person in everything I do. I try not to just do it at the minimum. I try to give everything I can to every test that I'm involved in. So my work ethic is a big part of who I am, and I feel like I got that from my parents, mostly for my mom. And then my respect level is a big thing for me. If I respect you, then it's a big deal because I see if I'm gonna be respectful to you, I expect the same. And I like everybody. I like everybody until you give me a reason not to. So the respect for people that I don't even know is there, but until they give me a solid reason not to respect them, then, But my respect and my work ethic is what makes me who I am.
Marsh Naidoo (17:24):
What are your drivers? What are your motivational factors? What motivates you?
Drake Box (17:31):
I've talked about my mom a little earlier, and she's the main reason that I try so hard in everything that I do, because even though she's not here to see it to it physically, I know she knows what I'm doing. She knows all the opportunities that I have because more opportunities are coming my way. Meeting you is not just, like you said, a coincidence. I feel like God put you there for a reason and who would've thought it would've got this far. But my mom is the reason that I try so hard, and the reason I stress over my schoolwork and stress over my job because I wanna be the best that I can be for her and for me as well, and for my future family.-
Marsh Naidoo (18:15):
That brings me on to the next question. Where do you see yourself in five years from now?
Drake Box (18:21):
Hopefully in a king-size bed in Hawaii, <laugh>.
Marsh Naidoo (18:24):
Hey, that sounds
Drake Box (18:26):
Good, <laugh>. But no five years from now I hope to be in my career, just starting my career as a PTA My ultimate goal was to work in Shriner's at St. Louis, in St. Louis, Missouri, because Shriner's Children's Hospital is where I had my work done on my legs and my surgery and my PTA or my PT. So after that, I kind of had that special connection with 'em. So I'd like to return the favor and help other kids with cerebral palsy out and try to help them live a good solid life that they can be proud of.
Marsh Naidoo (19:03):
What's the message you want parents to take home that are listening to us today?
Drake Box (19:11):
This is coming from the "child's perspective." You know, said how you had the irrational thoughts about Kellanand wondered if he would be able to live a normal life and have those relationships. I would just say that to the child, it seems normal to have what he or she has because they don't know any different, Don't know what it's like to not live with cerebral palsy. So you just have to be strong for your child because they look up to you no matter, no what you do, they're, they're gonna be watching you. So if they see you strong and holding yourself together well in those really dark times of what's gonna happen to him, is he gonna be able to do all these things that I can do and have a job and a career and all that? If you're able to hold yourself together well and put a smile on your face, then they're gonna be able to go throughout the day and think, Okay, well I can do this.
(20:14):
If my mom or dad can do this, then why can't I? So I feel like you just gotta be strong when you're around your child, and it's okay to break down every once in a while. Just make sure that your child knows that anything that's put in front of them, they can get passed and they can beat. And then you just gotta love your child. Absolutely. You just, no matter what happened to them or what's different about 'em from other children, you need to make sure that they're, they know that you love them, you love them with genuine care, and you genuinely wanna see them succeed and you know that you're not gonna let this disability hold 'em back from anything that they wanna do in their life.
Marsh Naidoo (21:04):
Drake thank you so much for sharing your story with us. I know that your message is one that parents like me need to hear. What's remarkable is that you are choosing a career where your mindset, as well as your abilities, are going to make a huge difference to kids. So if there's any PTA school out there listening, we vote that Drake gets a placement. I understand that you wanna be a motivational speaker. Drake, if there are groups or organizations out there that would like to reach out to you, how can they contact you?
Drake Box (21:40):
The quickest way would probably be email. So my email is drakebox124@ gmail.com That way it's, it's easy to reach. So
Marsh Naidoo (21:57):
Now parents, if you would like to feature on the podcast or just share your experiences, you can reach me through the website raisingkellan.org Before I leave, I'm going to share the story with you. Kellan started primary school at three years old as part of the early intervention program. So for the last four years, I've taken Kellan to school and he's basically gotta go 150 feet from the car to the front door. I started with pushing him and his stroller, then pushing him along in his gait trainer, to pulling him along on his walker to finally where he now gets with his walker to the school door. Part of this trick includes scooting up a 25-foot moderate incline along the way, which we call his mountain. He doesn't only have me coaching and nudging him along. He knows that when he gets to that door, his principal, Miss Linda, is there to greet him with a sticker, and usually something along the lines of: "I see you working so hard". Every parent and every child needs that positive image, that expectation to strive to do their best. Whether it's Drake or Miss Linda, you need someone there to help you to the top of your mountain.
(23:32):
We have now come to the end of our podcast. I would like to give special thanks to Alan Ingalls for his amazing technical skills in making this project to reality and in getting the message out. So thank you, Alan, Till we see you the next time. This is Marsh Naidoo signing off with: "Get to the top of your mountain."