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Going Blue for Ben

I don’t know when I started associating colors with special days, but for as long as I can remember, orange and black have meant Halloween in my brain. Brown, orange, and yellow make me think Thanksgiving. Red and green trigger thoughts of Christmas. Red, pink, and even purple in recent years, point my mind to Valentine’s Day and I’ve noticed a great many people wear green on St. Patrick’s Day. Now, there’s blue on World Autism Awareness Day.

Wednesday, April 2 was established as World Autism Awareness Day (WAAD) by the United Nations General Assembly on December 18, 2007 to raise awareness of autism in all levels of society. (www.theun.org) This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges. (www.autismspeaks.org)

We knew early on in our son’s life that something was different about him compared to his older siblings. I can’t recall how many times the conversations at home included phrases like, “You’ll never guess what Ben did today. It wasn’t necessarily anything wrong, just different.” Even routine checkups at the doctor lead to comments like, “Wow, I’ve never seen that before….It’s not wrong, just different.” And each time, while I held on to the “It’s not wrong,” my heart broke a little deeper with the addition of, “different.”

But different isn’t wrong. Different isn’t bad. Different is, well, different. Different was never used in context to determine a measure of the same quality or character as defined by http://www.dictionary.com, but rather the degree of similarity. The kids were and continue to be different: dissimilar, not identical. Aren’t we all, then, different? Even identical twins typically have quite differing personalities, neither one better or more valued than the other, just different from one another.

As we grew into our role of being a spectrum family, we all subconsciously took to the task of spreading awareness. I don’t recall ever having a family meeting with the older kids and laying out guidelines for how we would tackle life, we just did it. We are a family and to us, that means we stick together and support one another. I saw our older children begin to share their story with their peers. “My brother has autism.” “It’s okay, loud noises scare him. He’s not hurt or angry, just a little scared. He’s okay, he just has autism.” Awareness was happening before my very eyes. Understanding came, too, as their peers spent time around him.

I recall walking into the school to assist with a project in our twins’ classroom last year. It was in the afternoon, which meant I had both younger kids in tow. Ben was met with “Hey, Buddy!” and high fives up and down each row. We had moved on to acceptance. Once again using http://www.dictionary.com, check out this definition of being accepted: generally approved; usually regarded as normal, right, etc.

That seemed good enough to this mom’s heart at the time, but then he got into kindergarten where the challenges branched into the academic realm. Kindergarten, you might say, is a walk in the park: writing letters, sorting colors, counting bears, beginning to read. These all take a great deal of work, especially for a child on the spectrum, especially when the most difficult task is simply to stay focused. Sometimes, a child, any child, needs to release the stress that has been put on their systems – adults, too for that matter. Some handle stress better than others. Some release it through a run around the playground, some through quiet time with a good book, some through laughter – shrieks of giddy laughter. This is our boy: running and high-pitched shrills of laughter.

Not everyone sees this as a good thing, especially a substitute bus driver at the end of a seemingly long route on a seemingly long day. I can somewhat relate. The laughter can sometimes seem to cut right through the air and pierce the eardrums. When this happened on the bus ride home one day, the substitute bus driver very loudly demanded to know, “Who is screaming!?!?!?!”

I cringed as I heard our oldest daughter relate the story that afternoon, wondering what kind of battle lie ahead. Much to my surprise, the story ended quite differently than I expected.

A sweet little classmate of Ben’s stood to his defense and said, “That’s Ben. He’s different than us, and THAT’S OK!”

Enough said. The bus driver smiled and said, “Ok. Please try to be a little more quiet.”

That substitute bus driver is no longer in our area, but I’m betting he’ll never forget the day he was schooled by a kindergartner. I’m hoping he, and everyone on the bus that day, will carry the memory of the exchange with them for years to come. And I hope the kids my son shares so much of his day with will continue to come to his side when he is questioned. His classmate was aware that he is different. She understood that he is different. She accepted that he is different, even so much as demanded that the bus driver accept him as well, in so much as a sweet little kindergartner could demand. But she did it with a smile on her face and love for her friend, our boy, in her heart. She valued, supported, and celebrated our boy as she stood with him against the one who seemed angry about Ben being Ben. This little girl will forever be one of my heroes.

This is what it means to stand with us: to be aware, to understand, to accept, and to celebrate. Won’t you join us on Wednesday, April 2, by wearing blue to show you stand with us? I’m not asking you to donate to any one organization, but simply to stand with us and our son.

The colors of autism are red, yellow and blue. The symbol of autism is a puzzle piece, to reflect the mystery and complexity of the disorder and to represent the diversity of people and families living with the disorder. Blue, however, is the color chosen by Autism Speaks, the world’s leading autism science and advocacy organization, (www.autismspeaks.org) and has long been identified with the disorder. So every year on April 2, you’ll see us sporting our Blue for Ben. Won’t you join us?

Our au-some Ben & his amazing siblings on April 2, 2013.

Our au-some Ben & his amazing siblings on April 2, 2013.

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