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Building Their Village

April 2, 2012

Be the change you want to see in the world.
~Mahatma Gandhi

As many people know, today, April 2, is World Autism Awareness Day. It is a day filled with big events designed to draw national and worldwide attention to a disorder that now affects 1 in 88 American children. It is a day to spread awareness through conversation, blogging, tweeting, Facebook, or putting a blue lightbulb out on your porch. It is a day to start the conversation with others, so that they can understand a little more about those living with autism.

It is a big, public day, when the hope is that autism will be spread across the front page of every newspaper.

But autism doesn’t work like that. Autism is personal. It is isolating.

On Saturday, I wrote about the wonderful autism community and just what it means to me, as a mother, to be able to lean on that community. But, as uplifting and comforting as that community is for those of us making this journey with our children, there is a real fear that we hold for our children. Just last week, my youngest daughter was asked to leave her school program, where she had just started to really make some social progress. She was asked to leave because of her autism- because they don’t believe that they can get her to speak. That tiny spark of friendship,that took so long to start, is being snatched back from her, as this will be her last week at that school with these friends.

I wrote about the frustration and fears I have for her (you can read that here) – that she may never find the kind of support and comradery that so many school children can take for granted. I am frightened that she will have no real friends to accept her, just as she is, on her level and support her in her accomplishments and fight with her through her struggles. Isn’t that what we all want for our children – a village of their own, filled with people to support them and care about them.

Today, it was clear to me that my older children have found theirs. They are both able to attend our local Catholic school, and the amount of support they receive from the students and staff there is amazing. It dawned on me last night, as I was wrapping the puzzle piece cookies up for the kids in their classes (per my son’s request), that this is the key. This is where we will find Mary’s village. There is so much uncertainty surround my baby girl’s future. The one thing that is certain is that her big brother and big sister will be there with her on every step of her journey. They will be her bridge, because they will have the unique capacity to understand exactly what it is to be autistic, but will also be able to find acceptance in the “neurotypical” world. That means that they are her village, and perhaps their village can be hers as well.

So this morning, as I walked both of my older children into their classes, every teacher I saw was wearing blue, and pointing it out to me with a smile – they all knew what today meant. As I gave the preschool teacher the cookies for Joyce’s class, I watched her hugging one of her friends hello. Yes, my girl with autism has friends- friends who hug her. That all by itself is pretty amazing. Then I wheeled Mary back down the hall to Troy’s class. The teacher graciously allowing me to take a few minutes to speak to the class. I should tell you, the kids in this class are incredible. They are already well aware of my son’s autism, and they have been incredibly understanding and supportive of him.

I started by asking if anyone knew what special day today is. One student offered that it is the day after April Fool’s Day. Then another student proudly announced that today is Autism Awareness Day, and she had made friendship bracelets for the class. I asked the class if they knew anyone who has autism. My son, sitting in the front row, nearly jumped out of his seat and proudly said, “ME!” while all his friends proudly pointed at him. It never ceases to amaze me that he sees his autism as a badge of honor, and his friends seem to feel the same way.

So I told them I had come to make a deal – a cookie for a promise. I spoke to them briefly about Joyce and Mary both having autism – as many of them did not already know. Then I spoke to them a little about stimming, and sensory overload. There was so much more I wanted to tell them, but it seemed like giving them just a little at a time would be more effective.  I made them promise me that they would not tease or judge a friend or any other person for acting differently or for stimming. I made them each promise me that if they witnessed such teasing or judgement, that they would put a stop to it. I made them promise me that they would look out for both of Collin’s little sisters. And then I gave them each a cookie.

The whole conversation was less than five minutes, the payment of a cookie feeling grossly inadequate for what I received, but it meant something. We now have these little awareness warriors guarding the village. These worldly second- graders will be the “big kids” to Mary. They have a little more understanding now about why my kids do the things they do, and hopefully they will be more sensitive to and protective of, no only my girls, but of any other autistic friends they have along the way.

Mary may not be able to find her village on her own, but we can start building all of them their own village of awareness, understanding and support. Because, while we prepare our children for the world, we, as special needs parents, must also prepare the world for our children. And that is what autism awareness is all about – changing the world, one conversation at a time.

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