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Saturday, May 30, 2015

A Performance To Remember: Love and Acceptance, At Last

Copyright 2014, Amy Aves Challenger
They all lined up. Hands to the side, smiles, glasses, dresses, pants, shiny shoes. Boys and girls on a big, black stage. Ready. Boys and girls who had felt things before that weren’t so nice: Exclusion, shame, bullying, frustration, isolation, sadness, lonlieness, self-hatred, depression, fear. Little hearts lined-up on a stage. Each with a “special need.”

Some had messy, greasy hair and awkward gates.

Some stood sideways, shifting, avoiding eye contact.

Some had pale faces. Uncertain.

Some bounced, fidgeted, twirled fingers, or shifted from side-to-side.

One held his shoulders stiffly at his sides.

Some had clothing that draped awkwardly on the body, too high or too low or too tight.

Some had shirts with a few too many stains from lunchtime.

Some had been given confusing labels by professionals sitting behind big desks. Asperger’s, ADHD, OCD, Anxiety, Sensory Processing Disorder, Autism.

But those little minds and bodies looked healthy there, raised on a platform, higher than us adults for a change. They arced and stood like living flowers, more beautiful than any I had seen before. They revealed the total human, the honest child, the loving soul, up on a stage.

My boy sat in the back, alone, unable to perform. Part of the shadows now. Defiant. Maybe afraid of his own light. I was sad for this, but I was grateful for the hope in front of me.

A tear tried to come, but their faces wrapped me with gratitude that covered the sadness, like a warm blanket, painting a smile larger than the surface of my head. My adult education, criticism, impatience, and walls that divide one fact from another, one type of person from another, one age from another. My adult stuff was buried by their smiles. The openness and truth and hope that these children offered up there, so high— it flooded me.

They were ready to perform for the parents who had suffered with them for thousands of days. The parents whom I love. The parents who had waited for this day.

Then they began to dance and sing. Mouths opened, smiling, celebrating, swinging hips, pointing fingers up to the sky, bellowing words, joyful movements. Music soared.

They were fireworks in red, purple, blue, snapping, clapping, stomping, calling out sounds, words, loving life, finally themselves, at a place, a school that loved them. One year finished. Success at last. Triumphant children, all labels cast aside.

Their parents caught the light, animated, joyful, smiling, whooping, cheering. We all felt it. The glory of boys and girls accepted, sharing their gifts, for all to receive.

I’ll remember their dancing whenever I hurt for my boy, like I do today. I’ll remember the jubilee that waits within each mind, no matter the challenge. I’ll remember the music and the light that will find its way out when we seek the doorways and the hearts to welcome each child home...

Welcome them home to love and acceptance, at last.

Saturday, May 23, 2015

If You Give A Special Needs Boy A Summer Break, He's Going To Need Something to DO

If you give a boy a summer break, he’s going to want something to do with it. At least if he’s a 9-year-old, hyperactive, extremely bright, super sensitive, loving, kind, anxious child. (Anxious because the air hurts, voices echo, faces frighten, social cues make little sense and summer is a big, flaming gap of uncertainty.)

You recall camp experiences from the past and you cringe. (angry coaches, mean teachers, bullies, loud screaming noises, confusing transitions, rushing bodies, new kids every week, expectations set too high, too much activity. Your boy miserable afterwards. Tantrums.)

What will you do this summer?

He’ll ask to sleep in late. You’ll nod your head. Yes. When he finally wakes up, he’ll refuse to shower. He’ll eventually roll out of bed, and ask you for oatmeal with hot purple blueberries.

You’ll give him the oatmeal and he’ll spill the colorful gook all over his sheets, comforter and the hardwood floor. (You served him in bed to avoid a breakfast fight with his sister and brother downstairs.) He’ll leave the bowl on the floor, and then step on it, crunching its blue ceramic under his bare feet on his way out the door. He’ll scream in pain, and you’ll run to get a band aide. You’ll wish you could cleanup the sticky, nasty mess, but you’ll be chasing him down the stairs, asking him to get dressed and put on the band aide. (He’s still in his underpants.)

He’ll see his brother and sister perched quietly beneath the golden morning light that caresses their calm faces. Their nimble fingers string colorful beads at the kitchen table. He’ll find this image disturbing (who can sit and play like that?) and he’ll let out a screech before taking flight. He needs attention. Stimulation. Exercise. Routine. Space. Your chest will tighten. He’ll launch his lanky body at his sister. She’ll scream. He’ll do it again. She’ll scream louder.

The loud noise will cause his hand to reach for the nearest object in site…no, not the carrot juice container! He’ll swing it at her. Whoosh. Bright colorful wetness will splatter all of over the crisp, blue kitchen walls. It will dribble down between the table plank cracks, like an acidic flood over your hopeful morning. His sister will scream again, crying now, as though dying, melting from carrot juice. Her favorite purple dress is dotted with orange stains.

You’ll breathe hard. Your mind will try to empty itself, but instead will think about its feet running down the driveway, along the winding road, sprinting to the shell-covered beach of the Long Island Sound. You’ll imagine swimming through the ticklish water, until you get to the mouth, to the Atlantic. Then you’ll keep going. Paddling your favorite doggy-style stroke, you’ll imagine your picture on headlines “Mom swims across the world, escaping summer vacation.”

Mom! He’ll wake you from your fantasy. He’ll ask you to rollerblade with him, to calm himself. (He has determined that the carrot juice launch was not a calm act.) Though you’re wearing a bathrobe, and you haven’t had your morning tea, you’ll find yourself rolling down your driveway with black wheels protruding from your white fuzz. (You’ll do anything for peace.)You’ll see neighbors’ cars slowing down. You even might see a few fingers protruding from windows. They’re pointing. Your hair is messy, and you flick it aside, but you did wash your face. You smile and wave at the cars. (You've learned to do this.) Your husband will text you, are you rollerblading in your bathrobe? And is our son rollerblading in his underpants? The calm kids inside must have called Dad about this. Tattle-tales.

You can’t reply. You’re determined to get your roller-spin down (it works to entertain your special boy) and, who can text while blading? As you spin, you try to figure out how you’ll do this day, how you’ll keep the peace, how you’ll help your son survive the summer, why everyone cancels everything regular in the summer, why the notion exists that summer break is fun when it makes your kids'  life (and yours) unpredictable. Crazy. Exhausting. The air feels good, and you let yourself get dizzy. You’re a blur. 

Your daughter and middle son lean out the window, calling your name, slowing down the mesmerizing hysteria of your spin. They ask you for a cookie. You stop spinning, and you head toward the house realizing that if you give them a cookie, they’re going to want something, something really spectacularly good this summer, to go with it.

Saturday, May 9, 2015

Happy Mother's MONTH To Those Who Hurt

Happy Mother’s MONTH to you moms with special needs kids. And to you who have challenging kids. Forget that…happy mother’s day to ALL you ladies with kids who hurt.

Because mothering to me is about as beautiful as, well— God. BUT some days mothering is as hard as sweating through an ironman without sleeping the night before (not that I have done that…but I can only imagine.) And sometimes as painful as licking hot sauce after burning your tongue. This I have done.

Mothering hurts.

I know lots of you, and I have read about many of you, who are stuck, who are shut inside without help, who are searching always for ways to make things better for your child, for you, for your family. 

I know about you who are without available spouses, you who cannot find educators to take time for your child, you who cannot find the money to get the next service that somebody said might help your boy or your girl. 

I know about you who are ashamed, you who have tried so many services that you are confused and lost and hopeless. I know about you who are scared, you who need more time for yourselves, you who sometimes want to give up. I know about you who are tired. I know about you who looks at the next mom and the next and thinks that she's doing a better job than you are. I know about you. You are not alone.

Your journey is a good one. Your footprints are deeply imbedded into the earth, into the heart of vulnerable child. Your marks will never be buried. Without them, your special child might not fly. Without you, your child would not be.

So I extend a giant sky-sized hug, and a tremendous upside-down, rainbow smile to each of you moms who feels for your child, fights for your baby, experiences his or her tears that drip deep into your own body. It hurts. It is love. Drink it up knowing that it is good, and that your hurt is not felt alone. Your hurt means that our children are embraced. They are not walking solo.

Our pain, our love, and our endless connection to our babies is the great, great swing that they balance on. They sail through this world, able to smile eventually, climbing to the highs, past the deep places they go because you and you and you and I are here. We are here with them. Always.

I love you moms!