DCD & Me: Living with Developmental Coordination Disorder, featuring Julia Futo | EDB 237

Self-advocate and Different Brains intern Julia Futo discusses growing up with DCD.

(26 minutes) Julia faced difficulties early on in life with trying to perform everyday tasks. Before she was five years old, she was diagnosed with two learning disabilities: Encephalopathy and Developmental Coordination Disorder (DCD). She struggled in school for a long time, but that changed when she took journalism in high school and learned how to become an advocate. She is currently in college and hopes to help others find their voices.

For Different Brains articles written by Julia: https://differentbrains.org/a-day-in-the-life-of-someone-with-developmental-coordination-disorder/

To see Julia’s “Neurodiversity and the Coronavirus” project: https://differentbrains.org/neurodiversity-the-coronavirus/

Julia’s article for EP Magazine can be seen here: https://www.epmagazine.com/blog/being-a-neurodiverse-advocate

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FULL TRANSCRIPTION

HACKIE REITMAN MD (HR):

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of different brains. And today, we’re so lucky to have returning with us, one of our own Different Brains. interning trainee, journalist, an expert self advocate in developmental coordination disorder, and so much more. A real neurodiversity champion, Julia Futo. Julia, welcome back to Exploring Different Brains.

JULIA FUTO (JF):

Thank you, Hackie, it’s an honor to be back, I’ve been looking forward to it. I wouldn’t be back on again, if you didn’t want to have me back on again.

HR:

Developmental coordination disorder is something that very few of us know anything about. So please enlighten us.

JF:

So developmental coordination disorder, the best way I could put it into context is your mind and your body speak two completely different languages. So let’s say my brain speaks English. And my body speaks Korean. My brain is very fluent in English. It’s fluent in what needs to do, and so is my body. They’re both pulling their languages, but they need to somehow communicate with each other. And the way they do that is one of those cheapo translation devices that you can buy at any convenience store. You know how when you try to talk to a translator, and say something, it doesn’t always come out the right way. And then the other person who speaks a different language gets confused. That’s exactly what happens. So my brain and body have the messages confused, to try to perform certain everyday tasks. and development of coordination before affects people developmentally, and physically, but neurologically, too, because as I just explained, it’s your mind and your body having difficulties communicating a task that they want to do. Oh, and here’s another important thing. Developmental coordination before doesn’t always affect you — affect your learning abilities. Sometimes it’s just physical. But because I had that encephalopathy or brain damage, yes, I am also affected developmentally. So, for example, if I had a shoe, I would have a lot of difficulty trying to tie it, especially because it cross the midline of my body. And the scenario was someone that has developmental coordination disorder, their brain is kind of like Swiss cheese, you know, everything is intact, but there are holes everywhere. So when I would cross over the midline, or anything like going from left to right or right to left, my brain would just freeze and not know what to do. So that created a problem and doing everyday activities. And I still experienced many of the same problems that I had when I was a kid. But some difficulties, I still have a result of my birth. And one of the big things my family recently made note of is my speech. So I was born hypertonic with low muscle tone, and all over my body, not just by biceps and leg muscles, but all around the way I talk. It’s more of a, if you are a Microsoft PowerPoint, you got portrait mode and landscape mode, the way I talk is landscape mode. And because of that, my tongue doesn’t go in the right places, and it’s hard for people to understand. So even with just trying to, and right now I’m working with my aunt to try to get my speech to sound better. So there are many, there are many quirks to developmental coordination disorder, but some of the other ways you can like some of the main indicators as a kid is you miss major milestones.

HR:

Julia, tell us about some of your milestones and their delay and how it pertains to this discussion.

JF:

When I was a toddler, I, I didn’t even want to crawl I walked before I crawled but as a result of not crawling and not getting that necessary tummy time that I needed. Really, I have a really weak core as a person, I’m not weak. It’s just my muscles can’t stay extended for the normal amount of time and do simple things like say try to flip a pan and pour soup into a bowl. That’s another thing that most people will be able to do and I can’t do not because I’m weak but because I have low muscle tone in those areas. And that led to various physical problems later on as well as psychological things, because one thing I forgot to mention is primitive reflexes. Most people lose them when they’re like six months old, I still have mine. So I always feel as though I’m on edge. So I frequently appear as though I’m anxious or I can’t stop moving around. It’s not because I have anxiety or because I have ADHD. It’s because I’ve got these reflexes. So it’s hard. I never truly feel grounded. Unless I’m actually sleeping or something.

HR:

Which of your milestones were delayed by how much do you recall?

JF:

A lot. Every, there are so many things that have been delayed, and there are still many things that are delayed right now. For example: friends. I didn’t know how to communicate with people. I wanted to, and I tried to, but it was hard for me to communicate with people because it takes way more time and energy, and then it would a normal person to have something come through the artwork, now go up to the brain. And then think of a response. And sometimes I would change the subject without even knowing it — to this day, I still do that by accident. Um, and then when you’re bullied that further impedes developmental abilities to communicate with others. So I didn’t really have friends until I was at least 10 or 11 years old. Now I have some friends, but they’re more family friends, but never a like, close knit group of people that truly love me for who I am. Until I was that age, most people if they were friends, or just being friendly to me, because I had an accommodation where I needed a peer mentor. So I missed that big time. And as a result, and you can see with my friendship circles, the majority of people, the majority of friends in my life, are either way older or younger than me. I have very few friends that are actually within my age range. My best friend is like the closest person to my age. And that’s it. So it that communication was major and also eating. That’s a huge milestone, because with the hypotonia are, my swallowing muscles are still underdeveloped. And because I will choke on every little thing you could possibly imagine, which almost gave my mom a heart attack every time I tried to eat. And she asked herself, how many how do all these babies survive, because she didn’t know that all these things were up with me at the time. But because of that I ate like kid until recently, at 21 years old, I am now finally trying to expand my diet.

HR:

I salute you on getting a healthier diet, I got to do that too.

JF:

My grandfather always says, with everything and baby steps: it’s like eating an elephant one bite at a time. Which not just because I’m eating, but that’s very true. And I know a lot of people on trying new foods because you know, most people just need big plates, no big deal. Whereas I literally have to have maybe one or two bites the first time then the whole meal, I don’t finish and then the next time a couple more bites, a couple more, a few more. And then eventually, my palate can adapt to the texture and the flavor. So but then again, there’s that social aspect to a lot of people who’s looking like Julia, you’re wasting so much food. Well, I’m not trying to but you guys know that I might this way. So only give me a tiny sliver of something. And then if I like it off for more, and then that’s time I’ll have even more and more and more and then eventually I learned to like it. So those are two very big milestones that have been delayed or that I missed. Growing up. There are many more and I’m sure my mom could write down a laundry list of developmental delays or just any other delays. A couple other indicators of developmental coordination disorder, or a lack of growth and fine motor skills. So want to talk about gross motor skills. I’m referring to trouble with coordination in larger movements with a body such as walking, climbing, crawling, jumping, or even trying to sit up straight. And many people have DC also have a clumsy gait, meaning when they walk, it’s not very calculated or rhythmic. You know, I couldn’t even walk in a straight line Even if my life depended on it. So that’s what gross motor skills are. fine motor skills, on the other hand, involve more fine movements such as cutting with scissors. In writing involves less muscles than gross motor skills. If a person lacks gross motor skills, they will more than likely have difficulties with fine motor skills. As a smaller and more calculated movements are born from the bigger gross movements

HR:

Very interesting. And it’s always interesting to me how the physical meets the neurological. And they’re not just two separate distinct entities. And as an MD, you know, I have seen that your perspective is unique, because you recognize that rather early on. Now you want to win occupational therapy? And nowadays, you’re into quite a recreational athletic. Why don’t you share with our audience about that, and how that has been a tool for you for enjoyment. And to help you.

JF:

Before I start that, though, I also want to another thing about developmental coordination disorder, I had physical therapy when I was a kid. But when you have this disorder, you pretty much need every day, you need to be your own occupational physical therapist, like, it’s very much you lose it, or you use it or you lose it. So every single day, I have to train my body to do the simplest of tasks. And it’s that translator from the brain to the body, even the tiniest of things, the tiniest of change, it’s like, I need to let the translator upgrades, but it never reaches the full potential. And then like this much of a change, again, the translation device downgrade. So when you have my disability you are every day, you basically need to do physical therapy. And so one of the things that has been in my life, for half of my life is a type of Japanese martial arts called Aikido, it has helped me in so many different ways. For one, well, obviously, I learned how to defend myself, if I ever got attacked, and one of the reasons I took martial arts is because when I was a little kid, there was this boy who actually physically attacked me a few times, and I didn’t know how to defend myself. And if that would ever happen again, I need to know how to. Now the unique thing about Aikido is you’re redirecting your opponent’s energy, so you’re not going to go bash them in the nose or kick them in a undesirable place. You’re just going with the flow, which is something I actually have adapted into my life, I know things aren’t going to always go my way.

So I, if something changes, I just go with it. And through Aikido I have developed, I learned how to have successful and happy relationships because you know, when you’re a kid, you’re bullied and you can’t even cut things with scissors. No one wants to be around you. And I missed out on making friendships early on. So with those people, I learned how to interact. And with people of all different ethnicities, ages, races, you name it. ethnic backgrounds. And it helped me develop physically, mentally and emotionally, I got a lot stronger physically from it, because you have to learn how to move your body in certain ways. And eventually, I had to learn how to haul a 250 pound guy on my back and flip them. So you do your core muscles, your leg muscles, you get stronger all around. But like I said, it helped me develop mentally with brands too. And because I was socializing with people, and physically trained myself, I gain the confidence that I very much needed in order to enter many other phases into my life. And my yearbook teacher, and ESC facilitator only helped enhance that confidence and further encouraged me to really do something with what I got. Like, there are two ways to look at things you can either be like, oh, I’ve got a disability, I don’t want to do this or the other. Or you can view them as having secret gifts. For example, everyone jokes around about how slow I am sometimes, you know, my, my processing speed is, is within the eighth percentile, meaning 92% of the world can think more quicker and more efficiently than me. But because it takes such a long time to pick up on things, I’ve been told I’ve got the patience of a saint.

HR:

Why don’t you speak about some of the challenges you have how with mathematics.

JF:

Oh boy, so another thing about my neurodiversity is and actually before I even get into that: when I was four years old, my eyes started to cross and it actually impeded my vision. So I had to have double eye surgery when I was four years old. As a result of that, I think I lost my spatial awareness abilities. And I have a lack of depth perception, but the spatial awareness and that is more important than the lack of depth perception. Because I have this lack of spatial awareness, I want to get a lot of things wrong my math just because I don’t know how to line up numbers. It like they were all over the place scattered around. So I couldn’t tell what place the nine was supposed to be in or the two. So that was one major problem that I had math and still to this day have just not as severe. Another thing is, my brain can only pay attention to one thing at a time. So I can’t take notes and listen to a teacher at the same time successfully. Because I divide my attention, which I’m already not very good at doing. So I either miss out on what the teacher is saying, or I miss out on taking the notes. Um, that being said, it’s also because of, it takes my brain a much longer time to obtain the information than the average person does. So, in combine how long it takes me to learn things with not being able to listen to the teacher, and take notes at the same time. Combine that with years and years and years of horrible experiences with bad math teachers, and you have a math soup of disaster. And unfortunately, that is what happened to me.

My teachers, many of my teachers were unaccommodating and bullied me. So obviously, that didn’t help in my development or ability to learn math. And the way my school functions by College is a little weird, the whole tutoring session. So we only get X amount of I’ll make up random number, say I’ve only got 20 hours of tutoring per semester. And that falls for all my classes together, it takes me much more than just 20 hours to pick up on that. It’s something that requires repetition, that repetition and repetition. And that’s the key when you have developmental coordination disorder, you need that repetition, repetition is key. That’s how you learn. So with math, I needed to find someone or some people to help me that would be willing to take time out of their day to do daily math work. And I was very fortunate to have my grandfather who is very good at math, and also one of our own members, who was also your own offspring, help us or help me succeed in math. Without their help, I would not have I undoubtably would not have passed. And I don’t say that, because I’m insecure. I just say that because I know with how quickly that math class goes, and how long the time it takes to pick things up and how convoluted those concepts were. I would not have passed. I just didn’t have the time and brain efficiency to pick up on all that stuff. And just a short amount of time.

HR:

And as with all neurodiversities, as you’ve described, developmental coordination disorder, does not exist in isolation. It has all relatives, if you will,

JF:

Yes. And actually, to add to my as my mom would joke around swan song. Developmental coordination disorder shares many similarities to conditions like autism, and ADHD, and I have been diagnosed with both.

HR:

It’s my belief and one of the reasons that we started Different Brains is that labels are sometimes needed and everything else but it’s really about traits, you know, and so many of the traits overlapped. That’s really why we started Different Brains because what isn’t was over in this silo and DCD was over this silo, and Alzheimer’s was over there and anxiety and mental health issues. Stress was over here. Well, guess what? You can’t be autistic. Without having some stress, maybe a little bit of depression, you can’t have DCP without having X, Y and Z with it. So and I think the key is to identify the tools as you have in your life that can be helpful in the fact that you’re sharing these, with your articles with his interview with the books you’ll be writing, with the webisode series, such as ADHD power tools, humor, and I commend you on that. And I look forward personally to your professional career as a journalist.

JF:

Me too. And that really is a tricky thing with neurodiversity. You can have conditions and many times they overlap, but because there is a lack of understanding of say DCD, in a wide understanding of autism, and because I share many of the same characteristics, I’m more than likely going to be diagnosed as autistic than I am with DCD, which — that kind of creates a problem because do I get the help? Yes, but do I get the right help? No. So it really is tricky. And the only way to really know is to ask a person to really get to know them. That is essential for anyone that is neurodiverse. Because things aren’t always as they seem. So and that’s the other thing too. Developmental coordination disorder isn’t something that’s noticeable, like, say, Down syndrome, or cerebral palsy is or being blind. So that’s the other tricky part of it, too. Like, if someone just looks at me and talks to me, they’re not going to know they might not think I’m neurodiverse. But then when they asked me to say if I’m not working, do go backs and my brain is like going AWOL by a third item that you say I’m not able to comprehend it, then they’re like, oh, there’s so gonna be something wrong with her. So in a way, my mom poses question: Is it better to be something? Is it easier to just have something that’s like, obvious, like cerebral palsy than is to have some sort of oddball neurodiversity such as I’ve got that not too many people know about, and as a result, make many misconceptions. And, unfortunately, don’t always receive the right help.

HR:

It’s not one size fits all. It just isn’t because all of our brains are different.

JF:

Exactly. That’s why it’s so important to get to know a person before you jump to conclusions, because then it gives them the opportunity to say, hey, I need help with X, Y and Z. Hey, I’m A, B, and C… it gives them the opportunity to express what they are, and the best way to help someone, sometimes it’s just listening to them. And then when you do listen, you can help them in the appropriate way. You see, it takes a village to raise a child, but how can you raise a child but the village isn’t communicating with each other. And that was very much the case with me, especially in school, I educators didn’t really communicate with each other with me, so they never really knew what’s up. And what I was doing and what I needed. They just all like I guess, assumed that I was autistic or didn’t need help or gave me the wrong help. And it hurt a lot of my development. So people like anyone, all the people that are neurodiverse persons like me to communicate with each other, not just I’m not just talking about school members or school board, I’m talking about parents, friends, siblings, caregivers, they all need to communicate with each other. They all do. Because also with someone that’s reverse, it may take more than one village to help raise them. But it’s but it can be well worth it in the end. It can be very well worth it. And the people that can get the help can end up becoming very, very successful in life.

HR:

Julia, what is one thing you would like people to know about developmental coordination disorder?

JF:

So, one thing I want people to know about developmental coordination disorder: It often overlaps with conditions such as ADHD or autism. So it really matters to get to know us on a personal level and to pay attention to If we miss milestones because that is one big giveaway to if you have developmental coordination disorder and not autism, which is mutually exclusive to developmental coordination disorder or something else.

HR:

Well, Julia Futo. Different Brains intern and trainee, neurodiversity self advocate, and Pulitzer Prize winning journalist of the future I would predict. Thank you so much for being with us today and keep up your great work. Thank you.

JF:

Thank you. It’s been a pleasure to be a part of this.