Saturday, April 02, 2011

Autism Awareness

Open Letter to the World: (from!/AwarenessIsNotEnough

(The first part is from the Autism Understanding and Acceptance website. I have left it in its original format, even though I would change a few things - particularly the capitalization :D. I have added our story after the words "This is what autism means to me....")

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.

This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what autism means to me.

Autism means grief and loss.

I found out I was pregnant with Kenny on the first anniversary of Kyle's death. Such dreams were symbolized in that little pregnancy test stick turning pink. A new chance, new hope. I imagined, as most expectant mommies do, a million things about this child to come. What would he look like? Maybe he would be tall and strong with warm eyes like his daddy. Maybe he would be a reader, loving words like his mommy. Maybe he'd be like his grandpa and find satisfaction in solving complicated equations. Would his heart be okay? I wondered and worried and painted endless new realities in my mind.

Then he arrived, beautiful and perfect and healthy. Such absolute joy, fueled by relief, filled my home and my heart. It was going to be okay.

He grew into an active toddler with blonde curls and eyes that were neither brown, gold, green or blue, but a kaleidoscope of all those colors. He laughed and cuddled and ran us ragged. He talked. And talked. It was going to be okay.

Until it wasn't. One day, at Wayne Deckman's wedding, Kenny was restless, so I took him out of the sanctuary to a church foyer. Kenny was climbing up and down the steps. I tried to amuse him with the usual games. "Kenny, where's your nose?" Ordinarily this resulted in delighted squeals and a small index finger placed on that cute nose. This day, nothing. "Kenny, where's your nose?" Nothing. "Kenny, where's your tummy?" Nothing. Now tinged with a bit of alarm, "KENNY, where's your chin?" I pulled him close, and in what was to become a habitual gesture, touched his chin to turn his face to look at me. His eyes darted away from mine. Seeds of doubt were planted in that moment.

Within six weeks, Kenny went from 70+ words to almost none. He screamed. And didn't sleep. And ran through the house in a frenzy, jumping and climbing on everything. Was he deaf? Was it allergies? Was it teething? Was it his shots? Was it me?

It took months to get a diagnosis. And the day the doctor said, "Yes, it is what you thought. It is autism." In my head, I screamed, "NO! I take it back, he's fine. He's fine. He has to be fine."

But he wasn't. I wasn't. Dave wasn't. Nothing was fine. I watched the dreams I had for my baby crumble and fall. What would his life be like? No-one could answer this question. No-one. Would he read? Would he drive? Would he make a friend? Marry? Be happy? Questions flooded over me, like a waterfall over a rocky cliff.

Autism has robbed my son, my family. I remember looking at Kenny, riding his little scooter down the sidewalk, knowing - this is the very same child I loved yesterday. I love him today. That is the only thing that hasn't changed. Everything else is different.

A recurring lesson in my life has been to love what you have, to not live in the grief of what you no longer have. But, still, that grief has to be acknowledged. The loss is very real.

Kyle's death was nothing short of devastating. And I do think that his death allowed me to be a better mother to Kenny. On our very worst days, I could still be grateful. I could place my hand on his chest, feel that heart beating solidly, and be glad. I knew it could be so much worse.

But at the same time, it was. Kyle's death had an endpoint. A time when it was over. The learning to live with that loss is ongoing, but his death was one event. With autism, the losses just keep coming. Day after day, year after year, you find new things you must give up.

Autism means change.

Everything about autism requires change. I had to change what I did, how I did it and who I was.

We turned our life and our finances upside down to find a treatment that would help Kenny. Our criteria was, if it can't hurt him, we will try it. Auditory integration, sensory integration, physical & occupational & speech therapy, relationship & play therapy, nutrition and diets, behavioral interventions, vitamins, yeast treatments. And on and on.

We worked with him 40-60 hours per week. We enrolled him in an inclusive preschool. We had consultants from UCLA come. We recruited and trained Whitman students to work with him. We videotaped sessions, had weekly meetings and I stayed up all night to review tape to make sure we were consistent.

I became the mother from hell. I learned how to advocate. How to be the voice for a child who couldn't speak. How to keep him from getting chewed up by a system that doesn't know what to do for a child like him. I spoke up, spoke out and fought constantly. I changed. Dave changed. Our marriage changed. It was all-consuming. Autism consumed my every thought and action.

Dave suffered. Zach suffered. Kenny suffered most of all. And it was like trying to empty the ocean with a teaspoon.

I prayed constantly. Some days I hated God. Some days I was filled with self-pity. Some days I was filled with anger. Some days I was filled with determination. Some days I was filled with doubt. I was about as cuddly as a porcupine on crack.

Kenny fought therapy. We had to pad the chair. He thrashed and lashed out. He wouldn't sit down, much less do any other task. Our UCLA consultant told us that was a good sign. He realized he was giving up control. I clung to that hope. I doubted and wavered and thought, maybe this was a bad idea. And then one day, the therapist said, "Do this," and put a block in a cup. Kenny looked straight at the therapist, picked up the block and put it in the cup. Never mind that two seconds later he was throwing himself on the floor in a rage. He had done it. In that moment, we discovered ourselves on a new road. This new road was still not that beautiful garden path I had imagined. It was dark and full of pitfalls and dangers still, but it was headed in a new direction. It was headed out of this abyss called autism.

Autism means joy and hope.

They say there's nothing like the joy of hearing your child say mama. Kenny said mama a million times before he was 17 months old. And, yep. I was overjoyed. "Mama, he said Mama. He knows who I am!" I reveled in the sound of his voice. But I've got to tell you, that was nothing compared to what I felt when Kenny said his first word for the second time. We were looking out the window and a school bus drove by. "BUS!" he exclaimed. Bus. Yes, bus. My baby said bus. No-one in the world but Kenny and I know how many hours, how much effort, how many tears and prayers were in that one word. Bus. To this day, my heart warms when I see a big yellow school bus and I always wave at the driver. I'm pretty sure the bus drivers in Walla Walla wonder about the crazy lady in the silver suburban, but I just can't help it. Bus. Bus. Was there ever anything more beautiful than the sound of that word? BUS!

There's an old saying that goes something like this: Your problems come bearing gifts.

It's true. Like Kyle's death, Kenny's autism has meant incredible pain. But there are two sides to everything. Coins. Stories. Grief. Loss. Love. All of these have many facets.

Because of Kyle's death, I can treasure things that might have annoyed or frustrated me had I lived a different life. Would I change it? In a New York minute.

Because of Kenny's autism, I have discovered many things. Would I have given anything to have learned those things in another way? Of course. But it is what it is, right? This is the life I have. This is the life Kenny has. And even along the darkest parts of this journey, there are scattered gems on the path that sparkle and shine in the gloom. If you can see them, if you can bring yourself to pick them up, they are gifts. Maybe not always the gifts we longed for, but gifts just the same.

I have witnessed the generosity of the human heart in so many ways. From Whitman students who gave up their Ultimate Frisbee time to teach Kenny how to talk and who are his facebook friends today to preschool teachers who carried him on their hips when he was cranky to teachers who found ways to value Kenny's unique way of being in their classrooms, to other moms who sustained me, to those incredible kids who would become Kenny's friends. I have so many stories.

Once, we were at the park at one of Zach's baseball games. Kenny was playing on the rocks by the end of the duck pond. Another child found Kenny and they started playing hide-and-seek. Kenny was about 8 and fairly verbal by this time. I watched them a bit and they seemed to be doing fine so I watched the game. I watched Zach catch. I watched him pitch. I watched him check where his brother was between every play. Then I heard it. All the other autie moms will know what I mean. That sound that's somewhere between a yell and a donkey's bray that children with autism use to indicate distress. "Here we go," I thought, and got out of my chair.

Before I could get there, a boy from Kenny's school who was an acquaintance of Zach's, stopped the game of catch he was playing and went to Kenny. He put his hand gently on Kenny's shoulder and said, "Hey buddy, it's okay, just breathe." And he waited a second until Kenny calmed down. Then he said, "What's wrong?" And Kenny launched into this frenzied explanation. But the boy figured it out. He patted Kenny on the back and said, "It's okay, we'll work it out." And then he said to Kenny's hide-and-seek buddy, "Kenny only knows the regular rules to hide-and-seek, so you can't really play things like Ninja hide-and-seek. Changing stuff kinda freaks him out." The new kid said, "Okay. Come on Kenny, we'll play the regular way." And off they went. Kenny and new kid to play, and helper boy back to his game of catch. It took about two minutes. That two minutes was a magical, life-changing gift. That boy didn't have to help. But he did. The new kid didn't have to understand. But he did. I watched Zach's game through tears.

There are so many examples of this. Teenagers who gave up their Saturdays so that Kenny could play baseball and be on a team like his brother. And then there was football. Kenny said he wanted to play football. Oh crap. Oh crap. Now what? Surely if he was gonna get beat up or teased, this would be it. But who am I to put barriers in front of my son? So, football it was. And I watched, anxious and on alert for any signs of bullying or berating. Do you know what I saw? Star athletes stopping to help Kenny tie his cleats. Linebackers helping Kenny get into position. Coaches high-fiving him. Amazing is not a strong enough word. Jason Parsons arranged for Kenny to be able to make a touchdown in the 5th quarter of a Southridge game. It was one of the high points of Kenny's life. His buddies elected him most inspirational player. Not once, but twice. His schoolmates voted him Homecoming King his senior year. The yearbook shows a picture of Kenny with a globe. He was voted "Most Likely To Be Friends Forever - With Everyone."

Remember when I wondered if he would ever make a friend? Kenny's autism has given people an opportunity to show the best of who they are.

And Kenny? He will staunchly tell you that he no longer has autism. There are still struggles. There are still things to come to terms with - daily. I do not want to give you the impression that our battles are over. Far from it. But Kenny is happy. He looks like his dad and reads (maybe not quite as much as mom), but math has eluded him. He does make friends. He is fierce about sports. He takes classes at CC. He loves drama and has a part in the play - Kevin Loomer is an answer to a prayer. He has a job (thanks, Ann North Jones) and navigates around town on the bus. He texts his friends (A LOT) on his phone and likes everything on FaceBook (except the Huskies, the Yankees and the Steelers). He has a good heart and is honest to the core. He loves and lives passionately.

Do I still wish autism had never come to our family? Absolutely. 100%. Yes, yes, a million times, yes. I can never, ever find words to express how much I wish that. The only thing I wish more is that cancer and heart defects had also never come to us. This trifecta is ugly and has robbed us of more than even I know.

But the tiny voice of hope will not be stilled. I have hope. I have moments of pure joy. And I have love.

Do your part. Donate. Volunteer. Educate yourself. Speak out. Vote.

PS. One more thing that you can do. Remember Your words are powerful. Words shape our attitudes and our attitudes influence our actions. It's more than being politically correct. Use People First Language. Kenny is a person first. Autism is something he has, not something he is. He is not autistic. He has autism.

Kenny two days before diagnosis.

Kenny after the touchdown.

Kendra, Kenny's beautiful homecoming date, shows him who really wears the crown!

PPS. You can comment below. :D It makes me feel less insane when you talk back.