All Abilities Drama Camp, Day 1

Good Morning!  Are ya awake?  I’m up early this bright sunny  morning, both Willow and her soul sister Lilly are fully immersed in inclusion at AADC camp for Day one of a week of an absolutely amazing experience.  I’m hunkered down at Starbucks, have my Chai Soy Latte in front of me, and I’m plugging away at my blog at the old laptop like the rest of the hipsters around me, typing away to the beat of the reggae on the speakers.  Here’s to stereotypes I happen to dig!

Let me give you some history, from my very biased perspective, on the amazingness that is AADC.  My dear friend Anna Brannen is the creative mind behind AADC.  Anna and Willow have a history that goes back to when Willow was only 2 years old.  Anna was Willow’s DI (Direct Interventionist) through VIPS (Visually Impaired Preschool Services).  VIPS provided the visual therapy and support Willow needed during Early Intervention, called First Steps in Kentucky.  Every week Anna would come to our house with a huge variety of light up and fiber optic toys, recycled shiny foil wrap, and lightboxes and whirligigs that would make a Merry Prankster want to throw down a rave.  She would teach Willow and I how to help her focus her eyes so she could increase her functional vision.  When Willow turned three, she had to transition into preschool in order to continue receiving the therapy she so desperately needed, though I was unbelievably nervous about handing by tiny, fragile little baby to anyone outside the home.  In one of the many beautiful times when life lined up in a serendipitous manner just to please me (or so I like to think), Anna had just accepted the position to be a Preschool Teacher at the Jessamine Early Learning Village, and would be Willow’s teacher when she started in the winter after her 3rd New Year’s Eve birthday.  I honestly don’t know if I could have handed her over to anyone else.

Willow was in Anna’s classroom until the end of the year, still recouping from the anemia that was so very terrifying when she was nearly 3 years old (see “Reflections”).  She made some progress that year, and I hated to leave, but our little family had really struggled when Willow got sick, and we had decided to move to Texas to live with the girl’s grandparents who had offered us sanctuary and respite and help to get back on our feet.  We lived in Texas for three years, while Anna had moved to Nebraska with her little family.  Strangely, or again serendipitously, when we decided to move back to Kentucky three years later, so did Anna and her family.  Our friendship continued on a new level, as friends and parents, and Willow’s love for Anna never waned.  Soon she began to discuss an idea she had with me.

Anna is a woman with vision and ambition, and I think we are mutual in that regard.  She is an Early Childhood educator with a degree in Special Education.  She teaches at the Jessamine Early Learning Village, an amazing enigma of a school that fosters a strong passion for full inclusion.  All kids, all together, all helping and loving and learning together, in full awareness and embracing of all abilities.  This school was the foundation of my mutual passion for inclusion. In fact, when I left Kentucky for San Marcos, Texas, I took that passion and was instrumental in changing her preschool into a full inclusion model, refusing to allow Willow to be off in a separate room with all the other SPED kids as that school had been doing.  In one crucial IEP, her teacher and I fought under the definition of Least Restrictive Environment and forced the principal to change the school to full inclusion the next year.  (Then I became a paraprofessional there for two years to put the model into place.  It worked, and was awesome!)  But as Anna and I are very aware, this utopian model of full inclusion rarely exists outside of Early Childhood Education.  Soon as standardized tests and state rubrics come into play, the kids who are not on grade level are most often shunted off into a separate room, physically disabled kids on one room, behavior kids in another, close the door and keep them quiet during testing please.

That model sucks.  Plain and simple.  This world is a world of inclusion.  We all, as adults, have to mix and mingle and collaborate and struggle, bumping into each other along the way.  There isn’t and shouldn’t be separation; we all learned decades ago that “separate but equal” ain’t nothing but words, and a lie at that.  The Americans with Disabilities Act is an offshoot of the Civil Rights Act, and for good reason.  We can’t discriminate, we can’t label, we just can’t.  It leads nowhere but  backwards.  But how do we help our kids grow up with this wisdom, when schools at first grade start filing kids into separate rooms according to how well they’ll do on standardized tests?  Well, we start camps….

Anna teamed up with some damn amazing women who also teach at JELV, and before long All Abilities Drama Camp was born, seven years ago this week.  The first year, I showed up with my tiny 9 year old Willow and her 14 year old sister, who was a teen volunteer at the camp.  I wanted to stay and help, to make the magic happen, but I was pushed out the door by my loving teacher friends, admonished to go have a cup of coffee and some blissful solitude, and I left.  Solitude….what a concept!  That year, the camp did their own rendition of The Very Hungry Caterpillar.  All week Willow participated in the art room, painting the moon and the leaves and the fruit that make up the props of the story.  For the big play at the end of the week, (Willow was very sensory and overstimlated in general in those early days), the most she could handle was to sit by the side of the stage with headphones on to block the noise and push the button for the bubble machine.  She cried most of the time, but she was on stage, and she provided the cool bubbles that floated past the actors and the amazing set she had helped create.  It was the most inclusion she was capable of, but doggonnit, she was included.

Every year since, Willow has grown in her ability to participate in the play.  She has always enjoyed art, and painted and colored and glittered to her heart’s content during the week, being brought out to me at the end of each day covered in paint and glitter, and I’m the weird mom who loves glitter everywhere, and doesn’t mind having a shiny car and carpet.  The last few years, Willow has become a diva of sorts and enjoyed more time on the stage on the big debut on Friday of each week.  One year she had a pre-recorded line to “speak” into the mic by pushing a button.  Each year her own ability to be included in the mix has grown with her body, as she has matured and gotten stronger. This year, I am so excited, Willow is an actor!  She is going to be up on stage the whole time, one of the actors who act the script.

Mind you….Willow is non-verbal.

She doesn’t speak, but for unintelligible syllables that only I and a few others may understand.  But that silly fact doesn’t stop a woman like Anna and her colleagues from putting my kid up on stage and MAKING it work!  They will use her tablet to prerecord lines, Willow will be taught to push the right buttons at the right time, and she will be an integral part of the performance.  My baby.  My girl.  How amazing is that?  In this world, friends, I tell you its downright miraculous.  And that’s the beauty of AADC, it’s a small miracle in a world that needs them so damn much.  We are blessed.

This year is especially special for Willow.  For the first time in seven years, her sister is not with her at camp.  Every year Sierra has been a teen volunteer at camp, usually rocking her guitar in the music section while Willow paints and does her thing.  This year Sierra is in Florence, Italy for Study Abroad, and she can’t be there.  However, and here’s that beautiful serendipity I just live for, Willow is with her other “sister”, my partner’s beautiful daughter Lilly, who is 7 and is very new to this amazing world of inclusion.  Willow and I moved in with Derek and Lilly last October, and plunged Lilly into a world that she knew very little about. Lilly is an amazing human, she and Willow hit it off on the very first day they met.  We met Derek and his parents last summer at an outdoor concert, and for the first, maybe, ten minutes, Lilly was shy and sat back, observing Willow closely. Before long, Lilly had a million questions and wanted to see how Willow colored, how she ate, how she answered questions by choosing yes and no.  By a half hour into the show, Lilly  was pushing Willow’s wheelchair back and forth with crazy speed in front of the stage where my friends were playing some rocking blues music.  We sped back and forth, back and forth in the sun for two hours straight, spinning Willow’s wheelchair around and around while her light up wheels glowed in the setting sun.  Sold; since that day Lilly and Willow have been thick as thieves.  Soul sisters.  Since that day, and especially since we all became a blended family, Lilly has been somewhat forced onto a path of understanding differences in others.  She is a very inquisitive child and asks a million questions, most of which blow my mind.  One day, Willow was having a fussy night, so I took her into bed early, lifting her up into bed while she cried and fussed.  Lilly followed right behind us.  As I changed Willow into pajamas, Lilly watched her with deep empathy that is trademark of the little ginger.  With a child’s intensity, Lilly said to me “I wish I could be inside Willow’s head, so I could understand why she is so sad.” Amen, girl, you hit the old nail on the head.  This is why inclusion is so important, so beautiful, so difficult.  Empathy is never easy, and always makes us vulnerable.  Lilly is a paradigm of empathy, and thus the perfect sister for Willow.

All week, Lilly has been asking many questions about camp, and about special needs, and what she can expect at camp.  Every year previous, Sierra and Willow have done a presentation to the camp during the large group times when the whole camp discusses inclusion, and acceptance, and abilities, and love.  Mostly love.  Sierra would show the kids how she and Willow communicate using her tablet and making choices with yes and no, or with pictures.  This year, Lilly is most excited to do this with Willow.  She wants to tell the campers about the amazing day she first met Willow, how yes, she was a bit shy and nervous to meet her, but soon enough they were dancing and flying around to music at the concert.  How she proudly introduces Willow to her friends when they come over to play, and includes her in their play.  How she helps spoon feed Willow and helps me out when I’m home with both of them.  How she loves Willow and has learned so much since she’s known her.  How happy she is to have a sister in her and in Sierra.  Lilly is a fully immersed soldier in the world of full inclusion now, an ambassador for acceptance.

It’s a small camp, about 90 campers, out in Jessamine County, a small town outside of Lexington.  Many of the campers are the children of the teachers volunteering there.  It’s a microcosm; but it’s so beautifully relevant to the entire world.  Two days after a madman brutally murdered fifty people and wounded more for the difference he could not understand in them; a sadistic devil who chose to hate and kill rather that accept, or even just keep his damn opinions to himself and move on, we are more desperately in need for empathy and acceptance and love than ever.  Folks like Anna and her amazingly hard working colleagues, all teachers with kids who are voluntarily giving up their time off work to make this small model of inclusion work for one week, are saints.  They are paving a road for each and every one of those campers, showing them how to make it through this difficult, often desperate world with the least damage.  The most love.  The most acceptance.  To spread acceptance,  not harm and hate and evil.  If it were up to me, the whole lot of them would get the Nobel Peace Prize, truly.  The ripples they create this week will travel, through each child whose soul they are touching and helping to mold into the types of world citizens we absolutely and desperately need.  For that, I love them all, and am so grateful.

Please, if you can, come this Friday to Jessamine Early Learning Village at 11am and witness the end result of this terrific camp.  Come see my Willow in her purple wheelchair and light up wheels, likely very close by will be the cutest red head you’ve ever seen, sharing the stage with her sister.  The whole stage will be filled with kids of all abilities, wheelchairs, braces, Down’s Syndrome, Autism, neurotypical, red heads, blondes, Hispanic, African-American….it doesn’t matter.  Kids. They’re all kids, they have all different abilities, and they are all included.  And that, in the end, in the beginning, and all around the whole darn world, is all that matters.  Inclusion and Love.  I can’t wait….