An Improbable Artist

One could argue that my daughter’s painting is, well, a miracle. And if “miracle” seems an exaggeration then I guess one could suggest “highly improbable.” But no one could debate that it isn’t “amazing!”

AshleyVoss1Art is a wonderful form of expression, from emotions to experiences. But for my daughter, art is special because being able to communicate in any way is a blessing. Due to brain damage following her first open heart surgery when she was just 2 ½ years old, she all but lost the ability to verbally communicate. In fact, she nearly lost her life.

She’s cortically visually impaired. No depth perception and cuts in her visual field from the brain damage. We honestly don’t know exactly what she can and can’t see because she just can’t tell us.


And then there’s the weakness on one side of her body. It’s better than when she was recovering from the brain damage – at the time she had a resting hand splint to avoid contractures in her right arm – but, yeah, it’s still there. Just watch her crack a smile. First one side of her mouth, then the other.

So, you see, picking up a brush, applying paint to it, and putting it to the canvas to create art is for my daughter…remarkable.

We’ve found ways to make it easier for her: a slanted tabletop easel, a recycled egg carton to hold her acrylic paints, and a communication device. But it’s her “vision” that turns it all into art.

And there are times when it defies explanation. Like the time she painted what looked like a black stump…until it was turned horizontally and we realized it was our recently adopted black rescue dog. Or the time she painted two separate canvases. One might have initially thought “nothing special,” until the canvases happened to be placed side by side to reveal a perfectly aligned landscape of what appears to be the Southwest. (Maybe Sedona? She’s visited the Red Rocks. But we may never know for sure.) Or the time she carried a picture from a magazine to her art class a few months after we began eating gluten-free. When she was finished, it looked like the honest-to-goodness hamburger in the picture…lettuce, tomato, bun and all. (I think she was telling us something!)

artThree of her pieces of art have been published in the book A Room of Golden Shells: 100 Works by Artists and Writers with Down Syndrome (Woodbine House, 2013). Yeah, it’s remarkable.

Henri Matisse said, “Creativity takes courage.” Yes, indeed. And she’s got plenty.

Duh. It’s a Civil Right!

Last night, I saw a Facebook post to the group of our local Down syndrome association. The post was “Interesting study!” with a link to an article out of the University of Kansas, one of the preeminent special education programs in the country. The article is titled, “It’s time to end segregation of special education students, professors say…” and discusses recently published research titled “Stars in Alignment,” in the journal of Research and Practice for Persons with Severe Disabilities (a publication of TASH).

Lovely thought, wouldn’t you say? Except Dr. Wayne Sailor, one of the professors at the University of Kansas who co-authored this research, published this same idea “to end segregation of special education students” in the book The Comprehensive Local School: Regular Education for All Students with Disabilities (Paul H. Brookes Publishing, 1989) when he was at San Francisco State University. That’s over a quarter of a century ago! The reason I recognized it? Because that book was my “Bible” of sorts that inspired me to spend a large part of my adult life fighting public education (and prevailing) over segregation and discrimination of special education students.

In the foreword of his book published in 1989, Madeleine C. Will, former Assistant Secretary for the Office of Special Education and Rehabilitative Services (OSERS) of the United States Department of Education, well-known national advocate, and parent of a son with Down syndrome, writes:

The provision of the law calling for maximum integration is based on a recognition that separating children with disabilities from their peers, when not required for educational reasons, can impair the quality of the education they receive. Segregation often leads to the isolation of children with special needs. It can limit their opportunities for social interaction and make it more difficult for them to develop appropriate interpersonal skills. The lack of such skills creates obstacles to proper adjustment. Without the experience of living and working in community settings, it becomes more difficult for students with disabilities to live and work in the “real world” after they leave school. In addition, separate placements can stigmatize children with special needs. A sense of being different may cause a child to develop a negative self-image which can prove to be a greater obstacle to living a fulfilling life than any disability or learning problem…

 …The Comprehensive Local School: Regular Education for All Students with Disabilities is part of the continuing effort to develop models that will make it possible for all children with disabilities to be educated in regular educational settings.

That we are still discussing this concept of “inclusion” as if it were novel is disturbing and disheartening. And that the United States Department of Education continues to fund redundant research and programs, such as Sailor’s Schoolwide Integrated Framework for Transformation (SWIFT) to the tune of $24.5 million, the “largest grant in KU’s history,” for concepts that have been long-since proven to be educationally beneficial yet not implemented, has got to stop.

Once the 19th Amendment passed, I don’t recall over 25 years later hearing about women showing up at the polls only to be refused a ballot. And I don’t recall over 25 years after the passage of the Civil Rights Act hearing about signs mysteriously reappearing above water fountains for “White” and “Colored.”

So, who is to blame? The United States Department of Education and their Office for Civil Rights, first and foremost! No matter how you slice it or dice it, segregation and discrimination in special education is a civil rights issue. And, until we see it as such, there will be no concerted effort to end segregation and discrimination for individuals with disabilities so that they, and their families, can move forward permanently. We cannot champion this cause as fractionated groups related to a specific disability, be it autism, Down syndrome, cerebral palsy, hearing impaired, visually impaired, learning disabled. Until we see ourselves as ONE community, speaking for ONE civil right – the right to be counted, the right to be included – nothing will change.

The Closet

I’m sure it’s not an original thought of my grandmother, but “we spend the first half of our lives collecting stuff and the last half giving it away.” I think it’s safe to say that, at age 57, I am in the “last half” of mine. And, as if the expression of the “purge stuff” gene lays dormant until age 50, it has reared its wonderful head and is now in full swing. The “giving away” has begun, and the Salvation Army and the trashcan are the lucky benefactors.

Let me tell you, going through papers is a bit like an archaeological dig. Those at the top of the pile represent the most recent in time while those toward the bottom are the “ancient history.” And each stack is like a digest of your life. On a given week (or two…or three), I struggle with getting through the Sunday newspaper and then disposing of (er, recycling) it. So you can imagine how quickly I can collect a wee bit of paper!

Okay, so “It depends on what the meaning of the word ‘wee’ is.” Ya, ya, there’s some paper. Some of it is just too “hot” to handle: old, OLD IEPs that are inexplicably depressing and should honestly be ceremoniously burned, or documents from legal battles that represent years of my life doing what was necessary and right…but are now just too painful to touch and too “important” to throw away (perhaps material for that next book that never seems to get started). Sure, I get through some of the piles but then there are those piles that, well, continue to be piles.

Beyond the paper, there’s the “stuff” and all that it represents: clothes in my closet saved for years in hopes that twenty pounds might miraculously fall off my hips and thighs (I think I can now be rational and accept the fact that there are no fairy godmothers and I will not be spending hours at the gym), or “tacky sweaters” that might at some point no longer be considered tacky (nope, still tacky and always will be), an upholstered headboard and matching bedding originally designed for a 12-year-old’s bedroom (cute stuff but she’s 23, has graduated from college, and is on board that her room does not necessarily need to be a shrine to her youth), and assorted cookie tins (so, I guess I thought I was opening a bakery or would find time to bake for neighbors? Ya, didn’t happen).

Inspired by the title of the theme song from the movie “Frozen,” I’ve made headway cleaning out drawers and closets. “Let it go, let it go…” (That’s it for knowing the lyrics to the song. I told you I was decluttering my house. Why the heck would I want to clutter my brain with unnecessary lyrics?)

But then there’s the closet that is apparently emotionally “off limits.” Although it holds more than costumes, it is known as “the costume closet.” It holds the Harry Potter glasses and matching Gryffindor tie for when you might receive your letter by owl to attend Hogwarts, the witch’s robe and twig broomstick for when you might want to freak out the people you have already freaked out by dressing up as Harry Potter (you know, “those people”), or the white doctor’s coat and black gloves to become Doctor Nefario. (Hmm, are you thinking what I’m thinking? In a pinch, the Harry Potter glasses could be worn to improve the Dr. Nefario costume!) In any case, am I leading you to believe there are only costumes of witchcraft and evil? If so, that’s just not true. We can’t forget the pirate wench or naughty strawberry girl costumes that came home from college and made their way into the closet, too. Not all witchcraft and evil. Slutty, too!

You say you don’t have a costume closet? Hmm, everyone needs a costume closet! That’s where all the cool stuff is stashed to become someone you otherwise might not get to be. And that stuff isn’t going anywhere. Forget the lyrics! I ain’t lettin’ it go!

But then there’s the rest of the stuff in that closet that is apparently emotionally off limits: the neatly stored toys and the perfectly preserved children’s clothes. Dozens and dozens of them. Apparently, when the “purge gene” kicked in, there must have been a variant strain because it has, so far, not included that closet.

So, when I began hearing, “let it go, let it go…,” I finally began doing some soul-searching related to that closet. I know why I wouldn’t touch the costumes. But what gives with the toys and the four rods of children’s clothes neatly arranged by size?

The toys? Ya, there’s an explanation of sorts, I guess. We’re “stuck” developmentally. We haven’t quite outgrown them and haven’t quite moved on with our daughter with special needs. Ya, she’s thirty…but she’s not…”thirty.” Not just for the future grandkids, those toys might occasionally be pulled out for brushing up on some skills…say, at 32 or 33.

And the clothes? I guess I just can’t part with them because I can’t accept how I wasn’t able to take those years or moments in…getting to just be a mom…rather than trying to create those perfectly worded, but awful, unfulfilled IEPs. The ones that the educational system agreed to, then thumbed their nose at and ignored. The ones that I can’t burn. Or when I was fighting those blasted legal battles that did more for lining the pockets of attorneys, and for the families who came behind us, than they ever did for my daughter or my family. That’s when my children wore those adorable outfits. When I was fighting battles. When I was running to multiple therapy sessions a week for our oldest after the brain damage when the surgeon botched her open heart surgery. When I was desperate for help and none was forthcoming. My children looked clean and adorable and precious, but circumstances were such that I didn’t get to take it all in.

Surely there’s a costume in that closet for a “mom.” That’s what I wanted to become that I didn’t get to be. Just a mom.

So, Why “Curve Balls?”

There’s something rather amusing to use a baseball analogy for my life. You see, as a kid, I didn’t play the game much…or well. When I did play? Bad things seemed to happen: broken finger, broken window, and broken confidence. (Broken finger catching a pop fly, broken window hitting a foul ball, and broken confidence when I didn’t know, or couldn’t judge, when to stay put or when to advance.) Simply, baseball was just not my game.

But, by the time I was a young adult, I had been on the receiving end of a series of “curve balls,” very tough life events, that I had less experience with than my poorly played game of baseball. And, this time, I was bare-handed: struggles to pay my way through college, the birth of our first daughter with multiple disabilities, additional acquired disabilities due to medical complications following her first open heart surgery, legal battles against our school district due to segregation and discrimination, another open heart surgery for our daughter…and that’s only the top of the 3rd! It just kept coming.

I wasn’t playing a game of dodgeball, so learning to catch, and catch well, was the only reasonable solution. In the end, catching curve balls became an important life skill. It taught me how to better concentrate. How to keep my eye on the prize. How to reject defeat. How to step up. How to adapt.

Few lives escape “curve balls.” But it is often not only the frequency but the speed and the amplitude that separates one challenging circumstance, or one challenging life, from another. Nothing leads me to believe that I have a “corner on the market,” or that I have acquired immunity to significant challenges in my future. It just doesn’t work that way. But, as I settle into middle age, I am thankful that I am inherently better prepared.

And I am finally ready to reflect and share as I face new challenges, struggles, and accomplishments. So, whether it is adapting to a necessary gluten-free lifestyle for the health of our family, taking on the challenges of starting my own garden and canning to reclaim our health, managing my cardiac issues, or managing the ever-present cardiac issues of our oldest daughter, I intend to keep my eye on the prize, reject defeat, adapt, and step up to catch a few more curve balls. They are bound to be coming! But that’s okay. I’m no longer bare-handed.