Tucker's Trust

Greeting Cards, Note Cards, Postcards

2010-12-11T09:00:00.000-05:00

I am delighted to announce that I now have my own department in the Implexity Designs shop at Cafe Press where you can purchase greeting cards, note cards, and postcards featuring my artwork. All proceeds go right back into my art supplies fund so I can create more paintings! Check it out HERE. Thanks, y'all.

ROMPP 2010

2010-05-19T07:00:00.009-04:00

The 2010 ROMPP exhibit opens Thursday, May 20th at the WVU Creative Arts Center. The opening reception is from 1:00 to 3:00pm, and the show runs until June 5th.

Two of my paintings were juried into the exhibit:

TUMBLE ATTACK (SOLD)

MISSION of PEACE (SOLD)

Hope to see you at the opening reception! (I'm skipping school to attend.)

Taking Part

2008-10-14T06:00:00.002-04:00

Today, from 10am 'til 2pm at the WVU Mountainlair, Tucker's work will be on display in the Mountaineer Room as part of the capstone event for the Perley Isaac Reed School of Journalism multimedia project entitled Taking Part.

Please stop by and check out the work of 9 artists with various disabilities.

Free Your Self

2008-05-19T00:00:00.001-04:00

The photo collage above was put together by the West Virginia Developmental Disabilities Council. Isn't it the coolest? I have it on a tote bag & greeting cards, even! The images are taken from my session with Tim Lefens and tracker Mary Beth Hill of Artistic Realization Technologies. They set up a demo at the Community Connections Conference at Canaan Valley Resort back in the spring of 2003.

A Truly Post Modern Guy

2008-02-01T19:30:00.003-05:00

The WVU Perley Isaac Reed School of Journalism did a Special Project about artists with disabilities. The video above was created as part of that project. Jesse & Sarah did a great job!

Guest Book

2007-01-01T00:00:00.001-05:00

Here's what Tim Lefens, author of Flying Colors and founder of Artistic Realization Technologies had to say about me:

Tucker is a strong-willed artist. He has an exacting taste, taking to the full control he gained through the A.R.T. system. The first day we saw him cut loose I knew his potential was unlimited. Tucker has shown the world the level of his talent and sophistication.

And here are some more comments from my Guest Book:

[Tucker is] talented way beyond his years!
These [paintings] are fabulous!!!
So way cool!!!
Tucker, you are awesome ...
Tucker, all I can say that wish I could know you better, where you get that energy from! I have a child with disability and I sure have learnt something very valuable today!! Keep on going buddy!!
Tucker -- your artwork is so wonderful. Congratulations. I am so proud of you.
Tucker, you are a true artist!!
Great work, Tucker! Truly awesome!
Tucker, you're terrific!
Super fantastic! Keep expressing!
I love the colors you use.
Beautiful art. Good luck.
Thank you for sharing your talent with us.
A pleasure to see your art work.
Congrats on your accomplishments.
Tucker -- You ROCK!
Tucker -- I'm so proud of you! I love your work. I hope our paths will cross again soon. Good luck!
Great art work -- Keep the creativity going!!
Tucker, nice use of color.
Thank you for sharing your art and photos with us. You touch my heart in places very few can.
Having watched Tucker during his first flight into painting at the Community Connections Conference in 2003, I'm thrilled to see his work here. -- We'd love to know about any other upcoming shows!
Thanks for being here. This is very inspiring!

ARTS-ROMPP

2006-06-01T00:00:00.001-04:00

ARTS-ROMPP
JURIED ART SHOW
Paul Mesaros Gallery
West Virginia University
Creative Arts Center
2 June - 30 August 2006

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.Gallery hours are Monday through Thursday, from noon to 9:30 p.m.; Friday from noon to 9 p.m.; and Saturday from 1 p.m. to 9 p.m. The Galleries are closed Sundays and on University holidays. All exhibitions, lectures, and receptions are free and open to the public.

~ ~ ~

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!

Artist of the Month

2005-11-01T00:00:00.006-05:00

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:

PATHS

2003-09-20T00:00:00.002-04:00

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!

Online Gallery

2000-01-01T11:59:00.052-05:00

This is an index to the artwork posted on this blog.

Unless marked SOLD or RESERVED, all pieces are available for sale.

All are stretched & wired, but not framed.Gallery wrap where indicated.
Contact Tucker's Trust for more information.
Please let us know about opportunities to exhibit!
Payments are accepted via check, money order, or electronically online via credit card.

Donations to cover the costs of art supplies are also appreciated. Just click the link in the sidebar. Thanks!

© Tucker's Trust

Cheech & Chong

2000-01-01T03:05:00.006-05:00

$50 (set)
ACRYLIC on CANVAS
13w x 16h (each)

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Irie Tears

2000-01-01T03:00:00.004-05:00

$40
ACRYLIC on CANVAS
17w x 15h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

BOLTED

2000-01-01T02:55:00.003-05:00

$30
ACRYLIC on CANVAS
15w x 18h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Untitled

2000-01-01T00:00:00.202-05:00

$50

ACRYLIC on CANVAS
12w x 12h (diamond shaped)

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Mission of Peace

2000-01-01T00:00:00.201-05:00

$50
ACRYLIC on CANVAS
16w x 20h

ROMPP 2010

** SOLD **

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Tumble Attack

2000-01-01T00:00:00.200-05:00

** SOLD **

$50
ACRYLIC on CANVAS
28w x 19h

ROMPP 2010

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

(untitled)

2000-01-01T00:00:00.197-05:00

** SOLD **
22w x 26h

untitled now hangs in the offices of Exceptional Parent magazine. Tucker was featured in the July 2004 issue along with an article about A.R.T.

Untitled

2000-01-01T00:00:00.196-05:00

** SOLD **

$40
ACRYLIC on CANVAS
18w x 8h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Deep Violet Swim

2000-01-01T00:00:00.193-05:00

NOT FOR SALE
This piece was done in collaboration with tracker Emily Cumberland.
It is not strictly Tucker's work.
ACRYLIC on CANVAS
16w x 48h

Straight Jammin'

2000-01-01T00:00:00.192-05:00

$30
ACRYLIC on CANVAS
14w x 18h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

The Dark Sunday

2000-01-01T00:00:00.190-05:00

$50
ACRYLIC on CANVAS
19w x 14h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Easter Egg Hunt

2000-01-01T00:00:00.189-05:00

$50
ACRYLIC on CANVAS
23w x 14h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Midnight Geometric

2000-01-01T00:00:00.188-05:00

$40
ACRYLIC on CANVAS
18w x 30h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Chains of Gain

2000-01-01T00:00:00.187-05:00

$20
ACRYLIC on CANVAS
18w x 16h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

The Walls of the Halls

2000-01-01T00:00:00.180-05:00

$30
ACRYLIC on CANVAS
22w x 18h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Maze of Orange Daze

2000-01-01T00:00:00.176-05:00

$20
ACRYLIC on CANVAS
16w x 8h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $20 to the total. Thank you.

Spring Swirl

2000-01-01T00:00:00.174-05:00

$50
ACRYLIC on CANVAS
19w x 13h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Autumn Swirl

2000-01-01T00:00:00.172-05:00

$60
ACRYLIC on CANVAS
24w x 24h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Summer Swirl

2000-01-01T00:00:00.168-05:00

$60
ACRYLIC on CANVAS
24w x 24h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

The Dots

2000-01-01T00:00:00.165-05:00

$20
ACRYLIC on CANVAS
18w x 18h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Funky Splash

2000-01-01T00:00:00.161-05:00

$50
ACRYLIC on CANVAS
21w x 14h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Space Adventure

2000-01-01T00:00:00.153-05:00

$50
ACRYLIC on CANVAS
30w x 23h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Purple Rad

2000-01-01T00:00:00.152-05:00

$50
ACRYLIC on CANVAS
18w x 12h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

It's a Straight Life

2000-01-01T00:00:00.150-05:00

$40
ACRYLIC on CANVAS
12w x 30h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Running Water of Lava Fall

2000-01-01T00:00:00.133-05:00

$40
ACRYLIC on CANVAS
28w x 37h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Cheddar Cheese Moon

2000-01-01T00:00:00.128-05:00

$50
ACRYLIC on CANVAS
34w x 34h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Free in Flow

2000-01-01T00:00:00.124-05:00

$50
ACRYLIC on CANVAS
19w x 36h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Evergreen Wish

2000-01-01T00:00:00.120-05:00

$100
ACRYLIC on CANVAS
36w x 33h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Life's Double You

2000-01-01T00:00:00.115-05:00

$50

ACRYLIC on CANVAS

19w x 36h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Quick Triple Ace

2000-01-01T00:00:00.114-05:00

$50

ACRYLIC on CANVAS

31w x 28h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Dumpy Youth Reel

2000-01-01T00:00:00.113-05:00

$50
ACRYLIC on CANVAS
24w x 37h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Little Peeved

2000-01-01T00:00:00.112-05:00

$50

ACRYLIC on CANVAS

26w x 22h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Destiny

2000-01-01T00:00:00.106-05:00

$50

ACRYLIC on CANVAS

23w x 25h

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

Fred and Ethel

2000-01-01T00:00:00.096-05:00

$50 (for set)
ACRYLIC on CANVAS
13w x 23h (each)

To purchase, click the DONATE button in the sidebar. Painting may be picked up in Morgantown, WV. If shipping is required, please add $30 to the total. Thank you.

TV Hip

2000-01-01T00:00:00.087-05:00

** SOLD **
38 x 46

TV Hip now belongs to West Virginia Advocates, Inc.

Purple Heart

2000-01-01T00:00:00.086-05:00

** SOLD **

26w x 17h

Purple Heart belongs to Logan Gentry of Charleston.

Purple Power

2000-01-01T00:00:00.084-05:00

** SOLD **

22w x 37h

Crazy

2000-01-01T00:00:00.080-05:00

** SOLD **

29w x 12h

Crazy now belongs to ResCare, Inc.

Rose Puddles

2000-01-01T00:00:00.078-05:00

** SOLD **

23w x 20h

Rose Puddles now hangs in the studio gallery at WVU's Center for Excellence in Disabilities. Viewing hours M-F 8:30-5:00

Cayla

2000-01-01T00:00:00.077-05:00

** SOLD **

A private commission for an exceptional young lady in London. Yes, her name is Cayla. :)

Realizations

2000-01-01T00:00:00.075-05:00

For so many of us, the brainwashing begins when our children are quite young, occasionally even before their birth. Diagnoses. Prognoses. It’s no wonder we learn to underestimate our children. After all, we’re bombarded with information regarding their potential (or lack thereof). We get it from the medical profession. We’re fed it by educational experts. We go in search of it online or in libraries. We even get it from friends, family, and total strangers. Some of it is bound to stick. All of it, regardless of the intent with which it was delivered, limits our children.

Tucker experienced a prolonged anoxic episode at birth. From the sheer length of time he went without oxygen, he was unceremoniously moved from one side of the societal balance sheet (future contributing member) to the other (perpetual burden). With that move came a whole host of additional baggage – cerebral palsy, cortical blindness, microcephaly, mental retardation, developmental delay. Sound familiar?

If you doubt or question or resist, you become the parent in denial. I resisted. I still resist. I am persistent in my resistance. I have complete faith in the power of the human spirit, a power that cannot be diminished by disability or adversity. And while my belief in Tucker’s potential was miles ahead of the pack, even I was guilty of selling him short.

I never fought the labels, for they were a means to an end. The end being services. Yet with each utterance, each completed form, those labels were making my son’s world smaller and smaller. By the time I realized this, it was too late. Minds were closed. Invisible “Do Not Disturb” signs hung over the plastic expressions on the faces of teachers, doctors, therapists, administrators, and even some family. Inclusion and self-determination were now on the other side of a Great Wall constructed of labels, bigotry, and indifference.

I had been battling for years to convince others that Tucker could say “yes” and “no” using his eyes. This first entailed convincing them that he had the ability to comprehend even the simplest of questions. A precious few believed. Some pretended to, just to go along. Most didn’t, including several who openly scorned my assertions. You know the type.

Still licking my wounds from the latest beating, a due process hearing in which Monongalia County Schools expended tens of thousands of dollars to convince a hearing officer that Tucker was little more than needy furniture, I happened to pick up a People magazine in a doctor’s waiting room.

Flipping through, I chanced upon an article entitled “Second Sight” which described an artist from New Jersey and how he’d pioneered techniques enabling people with even the most severe disabilities the freedom to express themselves through their art. Able-bodied “trackers” followed the instruction of artists with disabilities, using whatever method of communication available. Some used a laser pointer to choose colors, brushes, strokes. Others made their selections via a painstaking series of yes-or-no questions.

The proverbial light bulb came on. Tucker had always favored the creative arts. Without realizing it, we had been flirting with this technique at home for several months, having Tucker make all the decisions in the crafting of collages. He at least had control over the end product. It was his creation, not that of the teacher or the aide as is the case with those pathetic hand-over-hand projects.

Intrigued, I searched out the website of Artistic Realization Technologies (a/k/a A.R.T.). I read Tim Lefens’ book Flying Colors. The rest, as they say, is history.

In a whirlwind of planning, I managed to arrange for an all day demonstration at an upcoming conference for West Virginians with disabilities and their families. While I was excited to share A.R.T. with the conference attendees, I primarily wanted to present Tucker with the opportunity to paint with professional artists who were completely unfazed by labels, who expected no less of others than they did of themselves.

We decided to give it a try first thing Saturday morning, before the demo room got really busy. My anticipation was unbearable. Tucker wasn’t in the mood. Fine, I thought, this is his show. It won’t be enjoyable if it’s just another required activity. Fighting the crushing disappointment, I agreed we’d return later that afternoon. Throughout the day I watched in amazement (and no small amount of jealousy) as both children and adults, with a wide array of disabilities, blew away the fog of low expectations surrounding them.

Late in the afternoon, Tucker finally indicated he was ready to paint. My palms were sweaty. I hoped he couldn’t sense my anxiety. A massive amount of planning and preparation had gone in to this event. I wanted it to be perfect for him.

As if the Red Sea was parting, the demo room cleared out. The aura of expectation was so thick you could taste it. Observers who’d been in and out of the room all day chose to watch through the window instead, giving Tucker his space.

Tracker Mary Beth Hill (standing) asks Tucker Lewis (center) how he’d like to begin. A.R.T. founder Tim Lefens (kneeling) looks on.

Tucker chooses to begin with a circle. Mary Beth asks Tucker to indicate its center point.

Center selected, Mary Beth next asks Tucker to indicate a point on the circle’s outer rim.

Tucker chooses black, and Mary Beth fills in the circle Tucker chose.

The tracker never questioned Tucker’s ability to communicate. She just accepted it and moved forward from that point. After a very brief orientation, where I “translated” Tucker’s answers, I took a back seat. Responding to her yes-or-no questions with his eyes, Tucker directed the production of an extraordinary piece.

The end product.Tucker's first work on canvas, entitled "Realizations."

And he didn’t stop there. Next, wearing a headband to which a laser pointer was attached, Tucker created a second, equally impressive, work of art.

Tucker’s second piece, entitled "Purple Heart," was created using a laser pointerattached to a headband. The tracker chases the lightwith the paint, using the colors and brushes selected by the artist.
(Don’t you just love the heart shape right in the center?)

No one assumed he couldn’t do it, so he did. It’s really that simple. Every aspect of the paintings was his – from the size of the canvases to the colors to the brush size.

This from a child who the local educational experts had written off as “profoundly mentally retarded.” They had testified that there is no reason to include Tucker, because he is so far gone that he doesn’t even realize he’s being excluded. Expectations simply don’t get any lower than that.

Tucker now has a vocation that he thoroughly enjoys, and the potential for a real honest-to-goodness income-generating career. Isn’t that every parent’s dream?

The team from A.R.T. – founder Tim Lefens and tracker Mary Beth Hill – are true heroes in my book. Their methods have the potential to break down the barriers facing all people with disabilities.

Changing these perceptual paradigms is the first step on the path to freedom. Just ask Tucker!

~ Debi Lewis
Morgantown, WV

REALIZATIONS

2000-01-01T00:00:00.074-05:00

** SOLD **
36w x 47h

REALIZATIONS was created at Canaan Valley Resort during Tucker's first session with Tim Lefens and tracker MaryBeth Hill from Artistic Realization Technologies. It now hangs in the lobby of the Bureau of Behavioral Health & Health Facilities' offices in the Diamond Building in Charleston, West Virginia.

Grass

2000-01-01T00:00:00.062-05:00

ACRYLIC ON CANVAS

please pardon the poor photograph

** SOLD **

36w x 36h

Grass now belongs to award-winning author & blogstress, Robin Slick.

More About Me

1993-06-22T00:00:00.019-04:00

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?

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 ...

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
An Open Letter
published in December 2002 on the Bridges4Kids Web site
Getting 'Tubed
"When I Get Like Tucker"
published at Tell-Us-Your-Story

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.

~ Tucker

Safe Harbor Trust

1993-06-22T00:00:00.018-04:00

THE TRUST

On the [date], [name of 1st legal guardian], as Legal Guardian of [child’s full name], of [city], [state] and [name of 2nd legal guardian], as Legal Guardian of [child’s full name], of [city], [state] (hereinafter collectively the "GRANTOR"), and [name of 1st trustee], individually, of [city], [state], and [name of 2nd trustee], individually, of [city], [state], (hereinafter collectively the "TRUSTEE"), make this trust.

ARTICLE I

The Grantors’ Family

[name of 1st legal guardian] and [name of 2nd legal guardian] are married to each other and have two (2) children, namely, [1st child’s name] and [2nd child’s name].

ARTICLE II

Transfer to the Trust

The Grantors transfer to the Trustee the property listed in the schedule to this trust, and may transfer additional assets, to be held on the terms and conditions set forth in this instrument.

ARTICLE III

Revocability

This trust is revocable. Either Grantor can alter, amend, revoke, or terminate this trust. Upon the death of the survivor of the Grantors, the trust will become irrevocable, and cannot be altered, amended, revoked or terminated.

ARTICLE IV

Trust During [child’s full name]’s Lifetime

The Trustee shall hold and distribute all of the trust funds in the following manner:

A. Until [child’s full name]’s Death.

Until [child’s full name]’s death, the Trustee shall expend for [child’s full name]’s benefit as much of the trust’s net income and principal as the Trustee shall deem appropriate for his comfort and well being, to enhance and improve the quality of his life, to enable him to live in comfort for the rest of his life, to provide him with such amenities as vacations, attendants, recreation, and items of personal use, comfort, and adornment as are consistent with a very high quality of life, and to help [child’s full name] reach his greatest potential. The Trustee shall add annually to the principal any undistributed income.

B. Limitations on Use.

The Trustee shall not use the trust funds to pay for [child’s full name]’s basic support, maintenance, and health needs, and the Trustee shall not pay or expend any money in a manner that discharges the Grantors’ legal obligations to support [child’s full name] or any other beneficiary.
The Trustee shall not distribute or expend the trust income or principal in a manner that is reasonable expected to disqualify [child’s full name] from available federal or state aid or cause the trust funds to bear all or part of the cost of his treatment or assistance, if such costs would otherwise be borne by the state or federal government.

C. Direct Expenditures.

The Trustee shall, to the extent feasible, avoid making any actual distributions to [child’s full name] and shall instead apply the trust funds to his benefit, including directly paying those of his bills that are submitted to the Trustee by [child’s full name]’s legal guardian.

D. Expenses of Certain Other Persons.
The Trustee shall pay the reasonable expenses incurred by [child’s full name]’s friends and relations in accompanying him on trips, whether or not such trips are overnight, to the extent that the Trustee deems such companionship to be in [child’s full name]’s best interests. Such expenses shall include (but not be limited to) travel costs, hotel and restaurant bills, and a reasonable allowance for unspecified and miscellaneous expenses.

ARTICLE V

At [child’s full name]’s Death

At [child’s full name]’s death, this trust shall terminate, and the Trustee shall distribute all of the trust funds as follows:

A. The Trustee shall first distribute to each state in which [child’s full name] has resided and that has provided medical assistance on [child’s full name]’s behalf under a State plan (as defined in 42 United States Code, section 1396 et seq.), an amount equal to the total medical assistance under that plan.

B. The Trustee shall distribute any remaining trust funds to [name of 1st legal guardian] and [name of 2nd legal guardian], in equal shares, or in the event either of them is deceased, the same shall be devised entirely to the survivor of either of them.

ARTICLE VI

The Trustee

A. Named Trustees. [name of 1st trustee], of [city], [state] and [name of 2nd trustee], of [city], [state], are the initial Trustees of this Trust.

If either [name of 1st trustee] or [name of 2nd trustee] are unable or unwilling to serve as Trustee, then the other shall serve as the sole Trustee of this trust.
No Trustee named in this instrument or by the Trustee shall be required to provide surety or other security on a bond.
No Trustee shall be responsible for or need to inquire about any acts or omissions of a prior Trustee.

B. Additional Trustee.

The Trustee may appoint any person as Co-Trustee or additional Trustee to serve at the pleasure of the appointing Trustee.

C. Delegation.

Any Trustee may appoint any powers and authorities to another Trustee for any period that the delegating Trustee deems appropriate. A person dealing in good faith with any Trustee may rely without inquiry upon that Trustee’s representation that a particular power or authority has been delegated and non rescinded.

D. Resignation.

Any Trustee may resign by giving written notice specifying the effective date of the resignation to the designated successor Trustee.

If no successor Trustee is designated, a resigning Trustee shall give written notice of resignation to the designated successor Trustee.
A successor Trustee necessary to fill any vacancy shall be named by [child’s full name]’s legal guardian.

E. Compensation.

Each person who serves as a Trustee shall be entitled to receive reasonable compensation for services rendered. In the case of a corporate Trustee, reasonable compensation is based upon its published fee schedule in effect at the time its services are rendered or as otherwise agreed, and its compensation may vary from time to time based on that schedule.

F. Management Powers.

The Grantors grant the Trustee powers described below, to be exercised in a fiduciary capacity.

The Trustee may hold and retain as part of the trust any assets received from any course, and invest and reinvest them (or leave them temporarily uninvested) in any type of property and every kind of investment, in the same manner as a prudent investor would invest his or her own assets.
The Trustee may see or exchange any real or personal property contained in the trust, for cash or credit, at public or private sale, and with such warranties or indemnifications as the Trustee may deem advisable.
The Trustee may borrow money (even from the Trustee and from any beneficiary of the trust) for the benefit of the trust and may secure these debts with assets of the trust.
The Trustee may grant security interests and execute all instruments creating such interests on such terms as the Trustee may deem appropriate.
The Trustee may compromise and adjust claims against or on behalf of the trust on such terms as the Trustee may deem appropriate.
The Trustee may take title to any securities in the name of any custodian or nominee, without disclosing this relationship.
The Trustee may determine whether receipts are to be allocated to income or principal and whether disbursements are to be charges against income or principal, to the extent not established clearly by state law. Determinations made by the Trustee in good faith shall not require equitable adjustments.
The Trustee may make all tax elections and allocations the Trustee may consider appropriate; however, this authority is exercisable only in a fiduciary capacity and may not be used to enlarge or shift any beneficial interest except as an incidental consequence of the discharge of fiduciary duties. All tax elections and allocations made by the Trustee in good faith shall not require equitable adjustments.
The Trustee may distribute any of the trust assets to a minor by distributing them to any appropriate person chosen by the Trustee (who may be a Trustee), as custodian under any appropriate Uniform Transfer (or Gifts) to Minors Act, to be held for the maximum period of time allowed by law. The Trustee may also sell and asset that cannot legally be held under this custodianship and invest the sales proceeds in assets that can be held under this custodianship.
The Trustee may employ such lawyers, accountants, and other advisers as the Trustee may deem useful and appropriate for the administration of the trust. The Trustee may employ a professional investment adviser in managing the investments of the trust (including any investment in mutual funds, investment trusts, or managed accounts), delegate to this adviser any discretionary investment authorities, and rely on the adviser’s investment recommendations without liability to any beneficiary.
The Trustee may divide and distribute the trust in kind or in cash, or partly each, without regard to the income tax basis of any asset and without the consent of any beneficiary. The decision of the Trustee in dividing any portion of the trust between or among two or more beneficiaries shall be binding on all persons.
The Trustee may take title to any capital asset with a value in excess of five thousand dollars ($5,000.00) in the name of the Trustee in his fiduciary capacity, or if he shall deem it advisable, through a nominee or agent for the trust (with no obligation to disclose to anyone the existence of that agency relationship). The Trustee may buy assets and have the legal title taken by [child’s full name] or his guardian if the Trustee shall conclude that it is in the best interests of [child’s full name] and the trust.

ARTICLE VII

Overriding Purposes

This article states some of the Grantors’ purposes in creating this trust, and all provisions of this trust shall be construed so as best to effect these purposes. No Trustee shall exercise any discretion under this instrument in a manner that might reasonably be expected to frustrate the accomplishment of any of these purposes.

A. Benefit of [child’s full name].

The primary purpose of this trust is to provide [child’s full name] with such care and assistance as shall enable him to live in comfort for the rest of his life, to provide him with such amenities as vacations, attendants, recreation, and items of personal use, comfort, and adornment as are consistent with a very high quality of life, and to help r[child’s full name] each his greatest potential. No assets of this trust shall be considered available to [child’s full name] for determining his income or assets under the rules by which any government agency determines eligibility for need-based services or financial assistance.

B. Limited Power to Amend.

The Trustee may, by an instrument in writing, amend this agreement in any manner required to meet any of the objectives set forth in this article. No amendment under this paragraph may increase the class of beneficiaries.

ARTICLE VIII

Trust Administration

A. Spendthrift Limits.

No interest in the trust shall be subject to the beneficiary’s liabilities or creditor claims, assignment or anticipation.

B. Protection From Creditors.

If the Trustee shall determine that a beneficiary will not benefit as greatly from an outright distribution of trust income or principal, because of access to the distribution by the beneficiary’s creditors, the Trustee shall instead expend those amounts for the benefit of the beneficiary. This direction is intended to enable the Trustee to give the beneficiary the maximum possible benefit and enjoyment of all the trust income and principal to which the beneficiary is entitled.

C. Multiple Trusts and Shares.

The Trustee may invest the assets of multiple trusts in a single fund if the interests of the trusts are accounted for separately.

The Trustee may merge or consolidate any trust into any other trust that has the same trustee and substantially the same dispositive provisions.
The Trustee may divide any trust into multiple separate trusts.

D. Accountings.

The Trustee shall not be required to file annual accounts with any court or court official in any jurisdiction.

E. Disabled Recipient.

The Trustee may distribute payments that would be made to the Recipient at a time when the Recipient is a minor or disabled to the Recipient’s parent, guardian, or personal representatives, or the person with whom the Recipient resides, without looking to the proper application of those payments.

F. Change of Situs.

The Trustee may change the situs of this trust (and to the extent necessary or appropriate, move the trust assets) to a state or county other than the one in which the trust is then administered, if the Trustee believes it to be in the best interest of the trust or the beneficiaries. The Trustee may elect that the law of such other jurisdiction shall govern the trust to the extent necessary or appropriate under the circumstances.

G. Additional Transfers.

Any person may transfer property to the Trustee. The Trustee may refuse to accept a transfer if the Trustee deems acceptance is not in the trust’s best interests. The Trustee may accept a gift subject to one or more conditions imposed by the donor or the Trustee if it is in the best interests of the trust and the beneficiaries and if the condition does not change the rights of a beneficiary with respect to any prior gift.

ARTICLE IX

Definitions and Miscellaneous

A. Trustee.

"Trustee" shall include each Trustee individually, multiple Trustees, and any successor.

B. Tax-Related Terms.

All tax-related terms shall have the same meaning that they have in the Internal Revenue Code of 1986, as amended.

C. Copies.

There is only one signed original of this trust instrument. Anyone may rely on a copy of this trust instrument certified by a notary public or similar official to be a true copy of the signed original (and of any amendments) as if that copy were the signed original. Anyone may rely on any statement of fact certified by the person who appears from the original document or a certified copy to be a Trustee.

D. Per Stirpes.

Property that is to be divided among an individual’s surviving or then living descendants, "per stirpes", shall be divided into as many equal shares as there are children of the individual who are then living or who have died leaving surviving or then living descendants. A share allocated to a deceased child’s surviving or then living descendants in the same matter.

E. Number.

Whenever the context requires, the singular number includes the plural and the plural singular.

F. Applicable Law.

This trust shall be governed by and construed according to the laws of the State of [state].

DECLARED AND AGREED on the date indicated above.

______________________________________
[name of 1st legal guardian], Grantor

______________________________________
[name of 2nd legal guardian], Grantor

______________________________________
[name of 1st trustee], Trustee

______________________________________
[name of 2nd trustee], Trustee