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Beyond the Blue

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Autism Awareness Month is upon us.  I’ve seen blue lights along the routes we travel and have been touched by the display of support.  I remember seeing some of them last year, but I’ve also noticed some new ones that weren’t there last year.  This is progress.  To me, each new light shows that there is another household recognizing autism spectrum disorders, understanding and accepting differences, and celebrating the person rather than dwelling on the disorder.

April 2 is World Autism Awareness Day.  This year marked the seventh annual WAAD.  It was the second awareness day for our family.  I remember issuing a challenge to our friends and family last year to wear blue for Ben on April 2, and then being taken back by the number of pictures which had filtered our way via facebook, along with encouraging messages throughout the day.  It was then that I wrote, “You just never know how much a simple thing like this (wearing blue on World Autism Awareness Day) will mean to the family who is living on the spectrum.  Without saying a word, you have shared the message, ‘You are not alone.  You are loved and your child is accepted.’  And that is a precious, priceless message indeed.”

As blown away as we were last year, nothing could have prepared us for the blue we experienced last week for this year’s World Autism Awareness Day.  It was a culmination of so many hours, days, weeks, and months of sharing our story.  And honestly, it just happened; by no grand plans of mine, it just happened.  “Overwhelmed” doesn’t even begin to describe the emotions. 

Yes, there were points in the day I was overwhelmed, like when the class of grad students I spoke to last week sent me a picture of their entire class wearing blue for Ben; when a college student in Iowa sent support back home with a picture of her arm where she used a sharpie to draw a puzzle piece and musical notes declaring “I rock the blue4Ben.” complete with hashtags #wearblue and #neveralone; when I see pictures of kiddos my kiddos have never met, proudly wearing blue for Ben.  These are the moments my spirit is overwhelmed and my heart leaks out my eyes.

 

I spent much of the morning with Ben’s kindergarten class and his little sister’s preschool class, visiting with them, talking about autism, and painting puzzle pieces on their hands and faces. As I was leaving the building, a group of second graders stopped me and asked, “What about us?”  They were headed to PE and I was headed out to run errands, so I apologized for not painting them up, but chatted with them until it was their time to go into the gym. 

Within a couple of hours, I received pictures of the fifth grade class and their chalk board.  Their board was covered with puzzle pieces, hearts, and Ben’s name.  They used markers (I think) to color puzzle pieces on each other’s hands and faces and to write Ben’s name on themselves.  None of these students has a personal connection to Ben in terms of being related, or even close family friends.  Sure we see them around, but it’s not like they have ever spent time with him outside of the school or church setting.  And yet, here they were, Blue’d out to the hilt.  An hour later, I received pictures of fourth graders who had done the same.  And the middle school – oh my word, the middle schoolers!!  Our sixth grade twins went to school armed with facepaint crayons and decked out in blue from head to toe.  Their friends joined them in Rockin’ the Blue for Ben complete with blue tye-dye shirts, blue sparkly headbands, blue tutus, blue fingerless arm gloves, blue fingernails, and even blue legwarmers. 

When I picked the kids up after school, I saw student, after student, after student, ranging from preK to 6th grade, with the same support, literally painted across their foreheads, up and down their arms, and on their hands.  Each precious face, plastered with a smile for our little guy.

All this got me thinking quite a lot.  I hadn’t asked any of these kids to do anything.  I know there are other children with autism in our school district, but it was Ben’s name that kids were writing on the board and on their faces and arms and hands.  I know some of the other kids’ stories.  Some of them were diagnosed early and had a lot of early intervention services.  Others were diagnosed well into their adolescence and as such didn’t get help until they were much older.  Some families choose to share their story, some choose to keep their experiences private.  Neither is right or wrong, it is all a personal choice.  Not everyone is comfortable sharing the ins and outs of their journey and that is okay.  Just because we are comfortable sharing our story and answering questions doesn’t mean everyone is and that absolutely has to be okay.  No one can pass judgement here.  This autism thing, it’s not an easy walk to take, but every step of progress is so worth the effort.

That night, our oldest daughter’s volleyball team played their season opener in Galesburg.  I was so struck by the support in the middle school that I spent some time tye-dying socks for the 20-member team to wear that night.  It was just a very small way for us to say thank you for their support that day and to give them a little something to unite their team as they were the only ones whose uniforms had not come in yet.  So they Rocked the Blue for Ben & rocked their opener, too, bringing home a win in their stylish blue tye-dye socks and blue hair ribbons. And I’ve since learned, they decided on their own to wear those silly blue socks every game this month, Rockin’ the Blue for Ben all of April.  Those girls have caused my heart to leak out my eyes again.

Reflecting over the day, I found myself wondering how other parents of children with autism felt when they saw the kids with Ben’s name on them.  I wondered if they would wonder “Why Ben?” and “Why not the other kids?  Why not my child?”

I think the masses gravitate toward Ben for a couple of reasons.  First, he simply has a magnetic personality.  His laugh is absolutely contagious and if you’re lucky enough to make it into his inner-circle to be on the receiving end of one of his hugs, you’ll never forget it.  But I also think it’s partly because of how we have handled Ben’s autism as a family.  We haven’t hidden from the difficult moments.  We’ve embraced the amazing little boy that Ben is, rather than demonizing the disorder with which he lives.  Because we’ve been open and honest and try to advocate for him and for others like him, we’ve allowed the community to become his and allowed him to become theirs.  He’s our son, but he’s their boy.  He’s your boy.  And you, you love him deeply. 

I was asked by one of the grad students after a presentation last month what, if anything, we do as a family to celebrate World Autism Awareness Day.  At that point, less than a week prior to WAAD, we didn’t have any plans other than to wear blue for our boy.  To us, it’s not about a day, or even a month.  (April is autism awareness month.)  It’s not even about wearing blue, or any other particular color.  For us, it’s a lifestyle.  Autism Awareness Day is every day in our lives.  We live it.  We wake up with it.  We go to sleep with it.  We live it every moment in between.  Some moments are wild with laughter and joy so profound, not a dry eye can be found.  Other moments are so difficult, so loud, so heartbreaking, not a dry eye can be found.  But in the midst of all those moments, there’s a whole lot of life happening.  Life doesn’t have to be perfect to be wonderful, it just has to be lived.  That’s what we did on Autism Awareness Day; that’s what we’ll do all of Autism Awareness Month; and that’s what we’ll continue to do every day we are blessed to share with our guy.  And, if the last two years are any indication, we’ll be making a lot of friends along the way who will join us in taking this awareness thing beyond the blue, all the way to acceptance and celebration.

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