About Us
Julia N.
Age: 18 Location: Lusby, MD, USA Profession: University Student Interests: I am very into gaming as well as mediums such as anime, murder mysteries, and movies. I am currently a part of my college marching band and I am pursuing a degree in micro biology to develop medicines for people with mental disorders |
Julian G.
Age: 19 Location: USA Profession: College Student Interests: I’m a technical theater major, so theater is the obvious one. I also like creative writing and sculpture, and I tend to be very interested in science. My Story: My family all noticed my stereotypy since I was a baby, but I never really realized I was doing anything with my hands, or if I did realize, I never put much thought into it. As I understand it, I did my stereotypy very frequently as a little kid, I just never paid attention to it. In third grade, my teacher made it her personal mission to get rid of my stereotypy. She tried every strategy she could come up with, eventually making me go sit in the hallway for doing my stereotypy. I had told her I couldn’t control it and I couldn’t stop over and over again, but she didn’t believe me. Eventually, this caused my parents to take me to a pediatric neurologist to get a diagnosis. He interviewed me and interviewed my parents, then told them it was a stereotypy. My parents were also told that I would grow out of it. They explained it to me by saying that some wires in my brain were crossed that made my hands do the thing they do, and telling me it was called a stereotypy and I would outgrow it. I actually really liked getting diagnosed, because I had been saying I couldn’t control it over and over again, and now someone finally believed me. Unfortunately, the diagnosis didn’t get my third grade teacher to leave me alone. She wasn’t blatantly getting me in trouble for it anymore, but she wasn’t letting it be either. She started trying to get me to do something else instead, ranging from telling me to squeeze a stress ball to saying I should just sit on my hands. None of her suggestions worked, and every time they didn’t, I felt more and more like I failed. By the end of third grade, I was frustrated, and I was extremely self concious of my CMS. Anytime anyone mentioned my stereotypy, or asked what I was doing, I immediately got defensive and angry because I could not shake the feeling I was doing something wrong. Sometime in fourth or fifth grade, I realized that getting angry and defensive when people were asking me about my CMS more out of curiosity than anything wasn’t helpful, and so I came up with a pre-planned response (“It is like breathing. I do it automatically, and if I really focus on it I can hold my breath, but eventually I have to breathe again, and once I stop thinking about it, I breathe automatically”) to replace my knee-jerk reaction. By the end of elementary school and early middle school, I started learning to control my stereotypy. I trained myself to do it less and less for a while. Halfway through high school, I started questioning why I was bothering to suppress it. I realized that it didn’t do me any good to hide it, and allowing my CMS to happen when it is triggered by focusing on work is actually helpful. By now, none of my classmates or teachers minded my stereotypy, and if someone felt the need to judge me for looking a little weird, I didn’t care what they thought. I stopped worrying about controlling it. I’d never fully privatized it, and at this point, I doubt I ever will. I can control it if I need to, but I’m not afraid of looking a little strange, so if there is no harm in me doing my stereotypy, I just let it happen. When I was little, I was very focused on the idea of making my CMS go away. I dreamed of the day I’d grow out of it. I really wanted to control it. But in the end, the most important thing I learned to do was accept my CMS and harness the thought processes that come with it. |
Liz B.
Age: 25 Location: WA, USA Profession: Information Technology Support, and College Student Interests: Painting, Drawing, Acting, Singing, Anatomy, Neuroscience and Psychology, Building Things, Puzzles, Climbing trees, Architecture, Photography, and Making people laugh. My Story: I don't think I even realized I was doing my movements as a kid. If I did, it was never a big enough deal to me for me to remember it now. My mom assures me I did them from a very early age, though. I only really started becoming aware of them more a couple years ago when I started researching what my "weird hand thingies" were online. I started out looking at motor tics, and decided that it didn't quite sound right, and ended up down a rabbit trail of movement disorders. I finally happened upon something called "stereotypies." I started reading the medical journals that I found about it online, outlining what it was and what made it different from motor tics, and I knew I had figured out what my "weird hand thingies" were. I spent the next couple of months reading everything I could find online about complex motor stereotypies, and much of it was very interesting and enlightening, but the majority of information was from parents of kids with CMS, or medical studies performed on kids. I couldn't find anything about adults with CMS. I didn't know if what I was experiencing with my CMS was similar to what others with CMS experienced or not. There was no real way to know, since I was only seeing outsider perspectives. I finally found a couple of Facebook groups centered around stereotypies, and started meeting other adults who also felt like there was a dearth of information from the perspective of people who have CMS, and here we are. |
Rebecca S.
Age: 41 Location: UK Profession: Web Designer/Cross Media Specialist Interests: Spirituality, crafting, my children My story: I was born 41 years ago in a world before the internet was even a twinkle in its creator's eyes, and there was not a resource available to my parents to find out what was 'wrong' with me. According to my parents, I started making strange little movements while I was still a baby in a high chair. These developed into what they called "scrabbling": raising up my hands to my mouth and squeezing/turning them intensely while deep in imagination. I have no idea if my parents even considered taking me to the doctors or asking anyone about this behaviour. I think they just thought it was a quirk of mine, and they did their best to stop me doing it. If they caught me in that state, I would be given a sharp "stop scrabbling!" command, which usually did the trick. I grew up ashamed of my apparent weirdness. No one else I knew did it and I could see it made my family uncomfortable. Gradually I learned to hide it at school, and I only have one memory of a kid asking me what I was doing with my hands, while there. I was teased about many other things, but never the CMS at least. As an adult I found it would still get triggered when I was alone, thinking about something I had achieved that day, or imagining something in the future. I would ponder why it happened, what I was doing, what could it mean about me. Some days I wondered if it was a super-power waiting to be unleashed! It wasn't until my sister one day shared that her son had started making the exact same movements, and had used the internet to find out about CMS that I learned there were others like me. I had grown up feeling like an odd ball and suddenly I started reading about thousands of children around the world just like me. Unfortunately, I have many years of feeling ashamed for my CMS under my belt and it isn't easy to throw that off but I am working on it. My husband is aware of it and thinks it's cute. He likes to ask what I am thinking about when it happens and sometimes even comes and squeezes my hands with me because he wants to join in! So to all children and adults with CMS reading this, enjoy your super-power! |