learning to live and love from a new perspective

A little over three years ago, G was diagnosed with autism.  This diagnosis changed our lives in many ways.  The news was hard to digest.  One challenge we had to overcome (and that we still struggle with on a daily basis) is how to talk about autism.  How much to share, when and with whom?

In the days and months following the diagnosis, we shared the information with our close friends and families.  We shared it with people who were already close to G. They knew about his struggles.   They knew he spent almost fifteen hours a week in Early Intervention.  They knew he was behind in all of his developmental milestones. They knew…  and they loved him.  All of him.  Sharing G’s diagnosis with these people was a natural.  It opened the door to even more love and support than we were already feeling.

But what about the wider world?  As a teacher, I’d been privy to many conversations about the downside of labeling students.  Sometimes a label can open the door to services and support. Sometimes a label can cause a child to be perceived in a negative light, and can limit what people think he can do.  Sometimes it limits what the child himself thinks he can do.

So, within our immediate circle, we shared openly about G’s autism, and began the process of learning ourselves what that meant. As for the wider world, we were quiet.

After about a year, I began to feel the world begin to settle into a new kind of normal.  G had turned three.  He aged out of Early Intervention, and made a smooth transition into our town’s integrated preschool program.  Every morning, I dropped him off at his classroom – a class that was made up of fifty percent typically developing students and fifty percent kids with special needs.  Every afternoon, I picked him up from his Lunch Bunch classroom.  All of the children in G’s Lunch Bunch were there for the same purpose as G…  to receive ABA therapy.  All of the students were like G.  All of the parents were like me.  I didn’t need to make a choice to disclose or not disclose.  I had found my people…  and we had A LOT to talk about!!

I was learning a lot about autism.  G was making great progress at school, and I wanted to talk about it beyond my immediate circle.  But I didn’t know how.  I have a Facebook account.  I use it to share news about my family.  My posts were full of S’s accomplishments:  dance recital, new friends, learning to read.  G had many, many accomplishments during that time, too. He started greeting his teacher by name.  He requested a pair of scissors from another child.  He held my hand in the parking lot.  Thesewere HUGE accomplishments…  but they wouldn’t make sense if I didn’t share information about his struggles.

I felt like I was hiding something. In the two years since his diagnosis, I never once used the word “autism” on Facebook.  In the brief exchanges I had with friends outside of our immediate circle, I also didn’t use that word.

It was April 2012 when I first heard about Autism Speaks and Light It Up Blue.  I watched from the sidelines as people shared photos on line of blue lights, blue shirts, even blue wigs.  I read voraciously as people shared their stories.  But I remained silent.  I remained silent… but on that day I made a promise to myself.  If I hadn’t already, then by April 2013 I was going to come out of the autism closet and share stories of my own.

Sure enough, the months passed.  March 2013 was coming to an end.  I mustered up my courage.  I marched into the hardware store and purchased two blue bulbs.  At home, I swapped them for the regular bulbs in our porch lights, and waited for twilight, when I could get a decent photo.

Image

I posted it that night, with the following comment:

 Today was Autism Awareness Day. We chose to Light it Up Blue at our house. It has been a little over two years since G was first diagnosed. Living with autism means struggling with some things that are easy for most people. It also means slowing down and experiencing some things that others rush past. I’m thinking about all of that today. I’m also thinking with gratitude of the many people (professionals, family and friends) who are supporting G (and us!) on this journey.

And that was the beginning.  That post got close to 100 likes and comments. I felt the love and understanding rush in as if a dam had burst.  My days of keeping quiet were over.

Autism Awareness day is coming up.  There is controversy in the autism community at the moment. Autism Speaks has lost the support of many in the autism community, including me.  They do not represent the views of autistic adults (there is no representation on either the staff or board of Autism Speaks). Their budget goes largely to finding a cure, rather than providing services.  And their rhetoric raises fear, rather than offering hope.

So, I will not Light It Up Blue this year. But, I will try to find another way to reach out and share my experiences.  I hope that for those who are recently diagnosed, who are sitting quietly on the sidelines trying to make sense of it all, it will help them to read my stories.  I hope reading my stories will encourage them to reach out, open up, and find the support that is waiting in their own communities.

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Comments on: "Why I’m Not Lighting It Up Blue This Year… And Why I’m Sad About It" (3)

  1. I feel the same about autism speaks but also struggle with it having the most notorious symbol for autism awareness. Sadly, right now there is no other acronym or symbol that is even remotely as recognized as a symbol of autism. So what’s next? Do I or do I not light it up blue? I want everyone to know about my beautiful son. How can we along with our autistic adult community create an awareness/acceptance/celebrated community while educating at the same time? I’m willing to figure it out with you! Thanks for this post….

  2. I like Erin’s comment. I agree with the concerns about Autism Speaks, but there are few alternative organizations right now. I hope Autism Speaks will change in response to people’s concerns.

  3. Hi Erin and David! Thanks for your comments!! Erin… you’ve articulated exactly what I was trying to say. I really want to spread awareness and show support. Light It Up Blue is becoming recognizable to many… but I just can’t do it. I’ve been searching for alternatives. I think that I will purchase something with a positive slogan, but without the light bulb or puzzle piece (also Autism Speaks). And David, I agree with your comment. There is no widely organized alternative to Autism Speaks at the moment. Maybe by next year?

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