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Hi! My name is Tucker, and I am 15 years old. I live in Morgantown, West Virginia with my family. |
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In 2007, students from WVU's Perley Isaac Reed School of Journalism created a multimedia project about disability and the arts entitled TakingPart. Tucker was included:
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The photo collage above
was put together by the
West Virginia Developmental Disabilities Council.
Isn't it the coolest? The images are taken from my session with Tim
Lefens and tracker Mary Beth Hill of Artistic Realization
Technologies*. |
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ARTS-ROMPP A joint exhibition between the WVU College
of Creative Arts and the Center for Excellence. ARTS-ROMPP features recent and
collected works promoting the creative power in people with disabilities and
other challenges.
~ ~ ~ Four of my paintings were juried as part of this summer-long exhibit: Rose
Puddles, TV Hip, Crazy, and Life's Double You. Check out my
online
gallery to see these paintings (and more).
A story about the exhibit was broadcast on
WBOY and
WOWK on Tuesday 12 June 2006. Reporter
Lauren Hills did a great job with it! |
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WOW! Barry's Office Service of Morgantown selected me as its Artist of the Month for November 2005! My exhibit was featured throughout the entire month:
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GREAT NEWS! I had my debut art exhibit as part of the Artists' Showcase at the 8th Annual PATHS Conference* at the Charleston Civic Center (September 17-19, 2003). I displayed nine of my paintings and received a ton of positive feedback. Check out the article in the Dominion Post about my exhibit. *I also exhibited at this conference in 2005 and 2006! |
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Here's what Tim Lefens, author of Flying Colors and founder of Artistic Realization Technologies had to say about me: |
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A LITTLE ABOUT ME I love animals. I had a pet conure, which is a type of parrot, for a while. He could laugh and whistle, but he hadn't learned to talk. Neither have I, but I do communicate with my eyes, my laughter, and my body language. All living things communicate ... whether through words or body language or facial expressions or behavior. The tricky part is being understood. You see, I have multiple "difabilities" resulting from my very traumatic birth. You can read all about that stuff further down the page, if you're interested. After years of battles with the county school administration, I'm delighted to say that I now attend high school with my "neurotypical" peers. I can't help but think that they and I would be far better friends if I'd also been allowed to attend school with them throughout elementary and middle school, though. Instead, the powers-that-be insisted that I go to a school across town where they "cluster" students with "low incidence exceptionalities" (in other words, where they segregate kids like me "for their own good"). There are still students in Monongalia County and in schools around the United States who are trapped in similar center-based programs. They are well-intentioned, but separate is not equal -- and it never will be.
A positive attitude may
not solve all your problems, |
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My mother helped me create this site. We use it to introduce me to others, to answer some of the
questions kids most often ask (or would, if the grown-ups would let them), and
to raise awareness of some awesome organizations:
The Nth
Degree has awesome t-shirts, posters, and bumper stickers.
Artistic Realization Technologies pioneered the methods by which people
with difabilities can achieve completely uncompromised creative self-expression. Children's Neurobiological Solutions, Inc. targets research dollars towards real therapeutics for healing brains, unlike current medical approaches that merely treat the symptoms of brain injuries and illnesses. |
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A LITTLE MORE ABOUT ME I have a gazillion labels. You know, those big words that some people think define who I am, what I have the potential to achieve, where I should go, when I should arrive, and how I should get there. (And they believe these things before even giving me a chance to prove otherwise. If it was you -- or your kid -- how would that make YOU feel?) Anyway, let me tell you the labels I choose for myself before I tell you those that others have chosen: I am a kid, a young man, first and foremost. I am a son, a brother, a grandson, a cousin, a nephew, and a friend. I am an artist! I am a shameless flirt. (You can even call me "stud muffin" and I won't object ... much.) I am patient, tolerant, kind, silly, cuddly, lovable, ornery, and extraordinarily cute. I believe that everyone (yes, everyone) has gifts to share, and I expect others to believe the same of me. Now, for the other stuff. (You can click on some of the bigger words for a definition.) My primary diagnosis is cerebral palsy (CP), which is a condition that affects my ability to move in a coordinated way. It is believed that CP is caused by a hypoxic or anoxic event at or near birth, and I most certainly experienced that! I was not expected to survive, but after 3 weeks in the NICU (Neonatal Intensive Care Unit), I proved all those doctors wrong and went home! That was just the first instance of so-called "experts" underestimating me, which is so common amongst people with difabilities. CP is not a disease. It is not contagious, meaning you can't catch it by being near me. Although there are often medical issues, it does not mean I'm sick. In fact, I've rarely been sick. My "normal" brother and "normal" sister have had more colds and ear infections than I have. We all had chicken pox, though. That was NOT fun. Nature doesn't discriminate when it comes to chicken pox. CP is a characteristic, like having blonde hair. But kids with blonde hair are not excluded from my neighborhood school. I didn't choose to have CP any more than you chose to be tall or short. It's just a part ... and a very small part ... of who I am. I need special equipment to help me move and eat. Sometimes people, usually adults, can't see past that equipment. It seems like kids are quicker to recognize that my wheelchair and feeding tube are just tools. I currently cannot walk, use my arms, or even hold my head up for very long. I still have feelings, though, and those feelings can be hurt -- just like yours. CP also affects my ability to swallow. Yeah, that means that I sometimes drool. I don't like it anymore than you do. It's uncomfortable when my shirt gets wet, so I usually have a bandana around my neck. My form of CP is called "spastic quadriplegia" - which simply means all four limbs are affected with "spastic" muscle tone. Do you still have your tonsils? I had a tonsillectomy. Apparently, it is common for kids with CP to lack the involuntary muscle control to keep their tonsils out of the way. Thus, they were tickling my throat and causing me to gag often. When I was just 2½ years old, I had surgery to keep me from throwing up all my food (called a Nissen fundoplication). This prevents me from burping naturally, so a gastrostomy was also performed. My g-tube was originally intended just to "vent" excess gas (in other words, to let the burps out), but I was injured during the surgery and that caused me lose the ability to swallow my food properly. [Read the tale of my surgeries.] I've been working with therapists ever since in an effort to re-learn these skills. In the winter of 2003-2004, I received Marcy Freed's e-stim treatment (now called Vital Stim) for my dysphagia. It was very successful, and now I am able to take some food by mouth without having it go down the wrong pipe! (That's a really big issue for people with dysphagia, because when food and stuff gets into the lungs, it can cause pneumonia. And, when mobility is impaired -- like with CP -- it is much harder for the body to recover from pneumonia.) [Hindsight being 20/20, my mother now believes my tonsils were the culprit all along! She urges all families considering a fundoplication to first thoroughly explore a tonsillectomy. If the tonsils are triggering a gag reflex, then their removal might just eliminate the need for a fundoplication and gastrostomy.] Until I am able to take more food by mouth, I get all my calories and nutrition through my g-tube, which is a good thing -- because my special formula tastes pretty bad! A g-tube is a small tube that goes straight into my stomach. No, it doesn't hurt. I have a whole bunch of food allergies, so I have to be very careful about what I eat. The special formula ensures that I get all the vitamins I need, and the g-tube ensures that I don't have to taste it! Because of having CP, I have to take medicine a few times a day. These medicines help my muscles relax. Fortunately, I also take my medicine through my g-tube, so I don't have to taste it either. What I do get to taste are treats (popsicles, lollipops, and fruit smoothies) that the therapists use to help me develop a normal swallow. I hope to eventually be able to eat entirely by mouth, and to get rid of my g-tube forever. Another of my diagnoses (labels) is "cortical visual impairment" or CVI, which means that no one knows for sure how well I can see. With CVI, it is also not uncommon for vision to fluctuate -- meaning it varies from day to day, even from hour to hour. We are hoping that I can receive HBOT (Hyperbaric Oxygen Therapy) in the near future, and that it will help my vision (among other things). Although I currently cannot speak, that doesn't mean I cannot communicate! Several years ago, I taught my family how I say "yes" (by raising my eyes upward). I had been trying for a long time, and they FINALLY caught on! If I could have spoken, I would have said, "It's about time! What took you so long?" Now I'm beginning to turn this movement into a universally-understood nod to indicate "yes," and similarly, a shake for "no". My family and close friends also understand my facial expressions and body language quite well. And, there's no mistaking my mood when I start giggling! I was 5 years old when I let out my first laugh, and my family was so excited about it that they made complete fools of themselves trying to get me to do it again. Now, all they have to do is make a funny noise and I giggle uncontrollably (if I'm feeling well, that is). |
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Speaking of "feeling well", when I don't it's usually due to stomach aches of one sort or another. As part of having CP, I also have what is known as a gastrointestinal (GI) motility disorder - meaning that the smooth muscles of my digestive tract don't always squeeze things along as they should. (That's called "impaired peristalsis.") This results in a wide array of major and minor pains. Another aspect of my CP (and the brain injury causing it) is a sleep disorder. Due to "severe static encephalopathy" (How's THAT for a mouthful? Does that label really tell you ANYTHING about me?) I don't have a regular sleep cycle. Without help, I would "cat nap" around the clock ... snoozing for a few minutes at a time. Well, needless to say, that makes it a bit tough to learn new stuff. So, I have a night nurse who stays with me through the night and gives me medicines to help me relax and sleep (and let my parents sleep, too). I hope to someday develop a "normal" sleep pattern so that night nursing is no longer necessary. I'm making some progress in that I seldom sleep during the day any longer. Well, maybe a little power nap now and then ... but who doesn't? |
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Another label that's been applied to me is "mental retardation" (MR). MR is not contagious, either. It just is. Like having blue eyes. Does the color of your eyes define who you are? Would you like to be judged as inferior or excluded from your neighborhood school because you have blue eyes? I didn't think so. The school system used to insist on segregating me based on my labels. They said I needed "prerequisite functional skills" before I could be included. In other words, they insisted I had to learn a bunch of stuff before being allowed to interact with "normal" kids. Well, I haven't learned those things, but I'm now included. That just goes to show you that their reasoning was flawed, doesn't it? When you get right down to it, what difference do those labels really make? Labels are no excuse for segregation. When my family and friends look at me, they don't see my labels. They see ME. I challenge each an every visitor to my site to look past labels. Celebrate the person behind the labels. You will find it a very rewarding and enlightening experience. I promise. |
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So, what do you like to do? As you already know, I really enjoy painting. I have an online gallery, and plan to sell my work on eBay! I'm going to design a custom-made stamp so I can "sign" my works of art. I like listening to music, especially reggae and 50s rock-n-roll, and audio books. I like to play games and work out on my Quadriciser. We got a tetherball set for our gym and that's really fun! I love the rush of air as the ball comes racing toward me, then the WHACK as it hits my guided hands. Oh, and I love to swing ... the higher, the better. I have a need for speed, y'know? |
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Well, I'm glad you stopped by to "meet" me. I hope we can become friends. I know it'd be good for both of us. |
Here's some stuff my mother has written about me ...
Other really neat writings (poems, essays, etc.) ...
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I have a trust fund called a "safe harbor" trust. It protects my eligibility for government benefits and other asset-based programs. My mother has uploaded the text of this trust in the hopes of sparing at least one other family the expense of having a trust created ... especially when that money can be much better spent elsewhere! Click HERE. |
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If you live in the Morgantown area and are interested in working with me, click HERE. |
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Some really, really great links (alphabetized) ...
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| Last updated 03 August 2008 |
