So, you wanna know about me, eh? Okay, I'll tell you. Maybe -- just maybe -- you'll see that I'm not all that different than you where it really matters.
If you pass me in the halls at school or see me in class with my head down, you might think I'm unaware of what's going on around me. Naw. It's just difficult for me to hold my head up for more than a few minutes at a time. Of course, sometimes I'm snoozing -- like when class is really boring or everyone's ignoring me. I'm also very good at playing 'possum when I don't want to do something.
I love animals, but I'm allergic to dogs and cats (and many, many other things). These days, I take medicine to control my allergies. 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 almost a decade of advocacy, I now attend the school that I would attend if I didn't have difabilities. Somehow -- magically -- my "special needs" can now be accommodated where they couldn't before. Not quite sure what changed, because all the lame excuses the administration used to spout about why I just had to go to a center-based school with programs for students with similar labels still exist. Interesting, huh?
If you pass me in the halls at school or see me in class with my head down, you might think I'm unaware of what's going on around me. Naw. It's just difficult for me to hold my head up for more than a few minutes at a time. Of course, sometimes I'm snoozing -- like when class is really boring or everyone's ignoring me. I'm also very good at playing 'possum when I don't want to do something.
I love animals, but I'm allergic to dogs and cats (and many, many other things). These days, I take medicine to control my allergies. 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 almost a decade of advocacy, I now attend the school that I would attend if I didn't have difabilities. Somehow -- magically -- my "special needs" can now be accommodated where they couldn't before. Not quite sure what changed, because all the lame excuses the administration used to spout about why I just had to go to a center-based school with programs for students with similar labels still exist. Interesting, huh?
A positive attitude may not solve all your problems, but it will annoy enough peopleto make it worth the effort.
- Herm Albright
My mother helped me create this blog. We use it to introduce me to others, to answer some of the questions kids most often ask (or would, if their handlers 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.
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, so 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 typical illnesses 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. 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 young people 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 got rid of mine a few years ago. 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 the muscles I need to eat normally. 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. These days, my laugther is frequent -- and it IS contagious.
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?) 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 family 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 don't sleep as much during the day any longer. Well, maybe a little power nap now and then ... but who doesn't?
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?
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 must learn a bunch of stuff before I was allowed to interact with "normal" kids. How fair is THAT? When you get right down to it, what difference did those labels really make? I mean, those labels still apply to me, and I'm now included. That just goes to show you that all that fuss about "prerequisite functional skills" was a load of bunk. 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 blog to look past labels. Celebrate the person behind the labels. You will find it a very rewarding and enlightening experience. I promise.
So, what do you like to do?
As you probably 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. 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?
Here's some stuff my mother has written about 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, so 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 typical illnesses 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. 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 young people 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 got rid of mine a few years ago. 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 the muscles I need to eat normally. 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. These days, my laugther is frequent -- and it IS contagious.
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?) 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 family 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 don't sleep as much during the day any longer. Well, maybe a little power nap now and then ... but who doesn't?
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?
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 must learn a bunch of stuff before I was allowed to interact with "normal" kids. How fair is THAT? When you get right down to it, what difference did those labels really make? I mean, those labels still apply to me, and I'm now included. That just goes to show you that all that fuss about "prerequisite functional skills" was a load of bunk. 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 blog to look past labels. Celebrate the person behind the labels. You will find it a very rewarding and enlightening experience. I promise.
So, what do you like to do?
As you probably 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. 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?
Here's some stuff my mother has written about me ...
- Realizations
published in May 2003 in the CNS Foundation e-News
re-published in June 2003 on the Bridges4Kids Web site
re-re-published in The Parent Connection (Summer 2003)
re-re-re-published on The Beach Center on Disability Web site
Other really neat writings (poems, essays, etc.) ...
- "I Am The Child ..." (author unknown)
- "Welcome To My Home ... I Think" by Sharon Burleson
- "I Will Remember" by Terry Boisot
- "The Low Road" by Marge Piercy
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.
If you live in the Morgantown area and are interested in working with me, leave a comment and I'll be in touch as soon as possible!
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.
If you live in the Morgantown area and are interested in working with me, leave a comment and I'll be in touch as soon as possible!
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.
~ Tucker
