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April 1, 2012

“How we need another soul to cling to.”
― Sylvia Plath

I remember those days before my oldest son’s autism diagnosis. I remember feeling overwhelmed and helpless. But mostly I remember the isolation, the loneliness. I knew something was not right, not normal, but those around me insisted I was wrong. However quietly they might whisper to each other, or however pointedly and accusingly they may say it directly to me, I was the cause of his behavior. The blame fell squarely on my shoulders. I was obviously spoiling him, why else would he act that way? Without knowing what I was confronting, I had nowhere to turn for help. All I could do was circle the wagons to protect my child. I withdrew and we were alone.

I hear many people refer to the day their child was diagnosed as D-day, the day that changed everything. It did change a lot for us, but it felt more as though I had been handed the keys to the city. We had found a path and the gatekeeper was the psychologist pointing the way. It was relief. But, more than that, it was a new identity- a new community, where I found so many wonderful, wise, caring people, all willing to say, “yeah, me too.” or “I get that.” and “You are not alone.”

Now, two years and eight months since we were told, “your child has autism,” I feel like I have been strangely blessed by those four words that no parent really wants to hear. Since then, all three of my children have been diagnosed, and my attachment to this community has become all-encompassing.

In the early days, when Mary started to present with delays and other disabilities, long before we had any real suspicion of autism, it was the comradery of the autism community that lifted me. Here was a place, be it physical or virtual, where I could come and talk honestly about our hopes and fears, and it was accepted. There were no gasps of fear or people that I needed to comfort about my own child’s struggles. There were just nods of understanding, and sometimes invaluable advice from parents who had already travelled that road. I could share a tidbit about how she brought her hands together for the first time, and it was celebrated among these friends with all the true excitement as if I had said she just graduated summa cum laude from Harvard.

It is a level of understanding in this community that simply cannot be found in other circles. It is venting frustrations about the processes of securing services for your children, all the while being eternally grateful that those services are even available to be fought for. It is relief at finally finding a doctor who believes you when you tell them that your beautiful, overly social little girl is simply not developing the same way as her peers, even though her version of autism looked strikingly different from that of her older brother. It is comfort in discussing openly potty training techniques for your five year old, while listening to other friends boast about how their two year olds are completely trained. It is the huge celebration at the accomplishment of a successful playdate for your seven year old, and a place to share the angst and frustration over having to physically carry that same seven year old out of a store where he had been screaming, crying and kicking on his back on the floor in front of what felt like a hundred judgmental shoppers.

And it is this day, World Autism Awareness Day, when the community jumps into action, spurred on by or suffocating under the newest numbers released by the CDC. This day, when a community unites, lighting up the world with blue lights. It is this day, when friends and neighbors, many not personally affected by autism, get the chance to do something so simple and easy that says so very much to those of us fighting this fight every day. It is this day that my children look forward to, as though it were a birthday.

We bought our blue lights today. You’d have thought we were buying party decorations. As we were checking out at Home Depot, the kind woman supervising the self-checkout casually headed off a full-blown tantrum over a bag of potato chips by bribing my daughter with stickers. An angel, I thought to myself, as I instructed Joyce to thank the nice lady. Later, in the checkout line at the grocery store, where we bought some blue nail polish, I noticed a cashier with her hair hi-lighted in blue streaks. It brought a smile to my heart.

It is the little acts of compassion, such as handing a child a sticker instead of offering judgement or quietly replacing your white lightbulb with a blue one, that speak volumes to those of us in this struggle to help our children. It is the gentle smile of understanding that whispers, you are not alone, that we cling to. And when we are at our lowest and most vulnerable, when we have cast our fears, doubts, frustrations, hopes and worries out into cyberspace, it is the quiet voice and the comforting hand that reaches out across the blogosphere and into our hearts, “Me too.”

In the early days of Christianity, believers wore a small symbol of a fish, as a sign to recognize each other. During the days of the Underground Railroad, houses that were sympathetic to the cause and willing to offer shelter to those on the journey would light a candle in their window.

That’s what the blue lights mean. That’s what the puzzle pieces are. It’s a sign that says to those of us on the journey,
“I get it.”
“Me too.”
“You are welcome here.”

For more information:
Light it up Blue
World Autism Awareness Day

for when we dig the deepest
reach and reach to the farthest corners
to unearth the darkest treasures
give words to the whispers
lend them a loud, clear voice
and only then
do we take steps toward the light
and when we take that treasure, dark and cold as it may seem
so god damned heavy
and ours
ours alone
how could anyone possibly understand this thing?
and plop it down
in the middle of the village square
here it is, damn it
this thing i’ve found
here it is
it drops with a thud
shakes the earth
kicks up the dust
yes, here it is
deafening silence
and then
a voice in the distance says
i have one of those too
and with a thud
another drops to the ground
then another
me too!
and me!
yes, and me!
and suddenly it’s not so precious anymore
so heavy
no, it’s just one of hundreds
unique perhaps
but not solitary
not alone
never to be alone again

~ Jess at A Diary of a Mom


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