Autism Walk – Pretty Pieces
October 3, 2010
It’s been a while since I could write. It has to be admitted that though I am still in a positive mindset and still holding on and doing the things that matter I have become scattered.
I’m not able to focus on any one thing as singularly as I could before. I still try to keep to the basics and the balance of God, self, marriage, kids, and Autism. And like I’ve said before sometimes the orders get jumbled but for the most part, I’m keeping those plates spinning.
Having said all of that it’s been tough to keep the course. There is a real component now to the light sorrow that bites at the edges of my waking mind. It cannot be ignored but it can be moved around.
And yet spiritually I am not sure I’ve ever been so connected to the understanding that I am just a vessel one of a million floating on the water. I am no more special and yet neither am I any less.
My struggles are no harder and no more unique than any other of the winking lights that surround me. How I choose to accept my lot is all up to me. There is where I find my greatest strength.
When the laundry piles up or I see that I’ve baked muffins, two loaves of bread, and three dozen cookies but forgotten to pick Britty up from school on time I can laugh at myself. I’m doing the deal. I’m getting there and I still have a lot of hope to live.
Yesterday I did the annual San Diego Chapter of Autism Speaks Awareness walk. I realized as I woke to go to the event that I am rapidly approaching the one-year mark of that moment that the crystal bubble of my denial was shattered and the baubles and glass beads of my neat and ordered life finally shattered.
I remembered the exquisite sharp snap and sound of that break and I can still easily pull up the picture of how that mess looked as all those pieces scattered away from me. And yet it was with a real sense of celebration that we prepared to leave.
A friend and her children arrived with handmade Team Nicholas shirts, a thing I never would have even thought to do. They have brightly colored cheerful zig zags of color and each had a bright merry colored puzzle piece on it.
We all wore them and I got to explain what we were doing when we stopped at a major chain restaurant to eat. People’s eyes dove into them curiously and some people’s flicked with awareness and zeroed in on Nicholas in his bright red captain shirt as he tiptoed past them smiling and flapping his hands. I was able to explain Autism a few times to curious people who asked.
And I did it without a trace of tears or sadness. A year ago I would not have been able to even say the word. What progress is that!
At the walk, I was proud to see an ocean of people. They wound in front of me and off to the right up by the water and still further ahead and out of sight. There were movie and t.v. characters geared to children. Thomas the train and Spiderman and Star Wars at the beginning of the line. But, what caught me was that as the line of us wound further on a quiet fell. It got quieter and quieter as we walked.
There was a wagon ahead of us with a child deeply adrift in the rainbow water-colored world of his Autism and the wheels squeaked repetitively and would not stop. I became suddenly aware that this sound and the sound of hundreds of gentle unhurried but steady footfalls were all I really heard.
It was appropriate and right to me that we moved in near silence like so many of our children do. And the Autistic children that I could spot moved in that particular beautiful way of theirs hands flittering and dancing like butterflies. Some up on their toes and some with eyes towards the sky or on the cracks in the sidewalk or on the roses or some stopped to watch the way the grass rippled and moved in the slight wind.
Some of them clutched special items action figures or electronic devices or blankets as they moved. What struck me most about them was that there were no tears or whining or famous Autistic meltdowns that I could see as we moved. It was as if God had charmed us all.
Nicholas could be spotted from a mile away as one of these rainbow boys. He walked up high on his toes and flapped in time to his inner tune. But, on his face the entire time a wide interested, and happy smile. He didn’t display at any time any fear or worry over the crowds of people. He appeared so happy to slowly make his way it was as if he knew this was somehow for him.
And so we wound our way along the path past signs that stayed up the weekend before and even after we had gone that gave facts and information about Autism. And when we had done Neeko was given a winners ribbon and a balloon. One of the people giving them out was an adult Autist and she was clearly affected but like Neeko making happy faces there.
There were booths and fun things for kids after the walk and we spent some time gathering information and things. They had a lot of sensory opportunities for kids vats of shaving cream or coffee beans where the child would dig for a prize. There was a bounce house and a band and all kinds of fun. At one table there was jewelry done up with the famed puzzle piece motif. I am strongly drawn to the puzzle emblem.
My friend bought two beautiful beaded bracelets with puzzle pieces and ribbon and slapped one on my wrist. And we bought Britty a puzzle piece heart necklace. And we stood the three of us posed our hands, showing our bracelets, one on each of her shoulders wide smiles on our faces as the camera snapped.
We are smiling but there is an aura of solidarity and strength among us all. I love this picture because it clearly shows that Britty is in this fight too. Sometimes this beautiful girl of mine is nearly sidelined by all of this. I love to see her in the photo standing in the middle supported on either side. It is just where she belongs.
We left soon after. There were things that struck me about it all. One is that a year ago I could not have managed it. I just couldn’t have. So with every step I took I felt the muscle pull on the year I’ve spent. Another thing was that Britty has paid credit to her own grief and has moved on into a place of solid pride and support and love for her brother. My friend stood up for me and helped me make it a celebration time and the fact that we celebrated at all is an amazing accomplishment.
It struck a chord in my heart and reminded me that there is always someone standing beside me if I choose to look. Paul in his own way is moving on into acceptance though he still leaves much of the day-to-day to me he was there taking his place beside a legion of other dads. And lastly, one stunning thing that struck out was that we were all there celebrating.
Hundreds of us out and smiling paying homage to the journey we’ve made so far and promised in the face of staggering slanted odds that we will keep doing so. We will not give up. We will not leave our children here. We will not let the rest of the world forget about us or write us off. We will not go away quietly and watch as a generation of children fall under this baffling rainbow.
Our children also seemed to throw their voices in too even without words. Though I could certainly spot our kids I saw not one child off to himself hiding from the world. All were engaged in something or another out front and in the face of a moving world. My heart rested there in that.
In this last year, I’ve taken help and support and I’ve begun to give some back. I am a member of several online support groups. I already have experience, strength, and hope to give. I’ve gathered a few times with members of these groups going out of my way traveling to other States to meet up with them. I’m planning and helping to organize a trip to Disneyland for a large group of our children and their families.
I move and work to bring us together in the real physical 3 D world. Sometimes my best place has been to stand at the door of the incoming families into the Internet support groups and be the greeter who says/types those first things of empathy, understanding, and then of hope.
But, even further now I am having real things of value and experience to say. It is a circle and I am finding my part. I am grounded now in a lot of information. In a year I’ve learned the language here if you speak to me of IEP, ASD, low tone, stemming, and ABA I understand these foreign things. I am proud of how far we’ve all come.
There is a picture of Nicholas holding his balloon and clutching his winner’s ribbon. His eyes are crinkled in a deep pleasure for the moment and his lips are forming the word balloon. Balloon is one of his handful of not quite pronounced correctly words. The words are still very slow in coming a year in. However, his joy, interest, fascination, and love are pouring through. He has been kissed, loved, and appreciated into the boy he is.
If I never hear much of his voice at all I will accept it. My heart will find its peace. I will treasure that picture where I can clearly see his joy in holding the simple little balloon along with the gift of that hard-won word clearly formed and spilling from his lips. I will hold the memory of the day forever.
And though I struggle some I am proud of how firmly we all stand a year into our own Autism journey. The wind is not so stiff I am no longer as bewildered and I am beginning to see much in the slightly askew, always interesting, wonky, and wild beauty of this watercolor new world.
There are a million ways to grow here, a thousand opportunities to build strength upon, and countless ways in which to grow a faith that cannot be shaken. There is a fierceness to my love that I’ve never paid honor to and it roars up even in the face of Autism’s imperfections. This family has benefited from the ways we’ve all had to change, reach, bend, and then grow. We are all better people because of our precious Nicholas.
A million and one glittery puzzle pieces line the road ahead of us, and yet I am so much less afraid because for someone I love I can do simply anything. For them I will give, try, do, and ultimately accomplish anything. The pieces are beautiful, the skittery scattery mess lovely, and I am finding strength in the calm soft ground of surrender. I am living out my love with great purpose today.
She flung all the pieces and let them fly
the destruction of the walls she had built
was a surprisingly beautiful thing
the fragments of her life glittered and shimmered
As they arced beyond her and caught the light
for the briefest moment, they took flight
for one stunning second, she thought they might
but then losing the battle they fell swiftly to earth
and scattered prettily upon the dirt
shattered glassy bits in pieces on the ground.
All the things she had thought important
tossed about suddenly without pattern at all
all the parts she once fought to cover now naked
laid bare for all the world to see
shards poking out tearing holes into the last of
the design until only the memory remained
freedom blew in on a sudden breeze
peace drifted up from within
she stood caught up in the beauty of the mess
and suddenly she knew
she had never needed all that room