Thursday, April 14, 2016

Autism Awareness Month: Moving from "Awareness" to Friendship

April is "Autism Awareness Month." You can travel the world over to see iconic buildings--lit up in blue neon lights that give tribute to those families and people who deal with autism. In 2007 the United Nations instigated an "awareness" campaign. Many people have organized venues to heighten "the awareness" of this neurodevelopmental disorder--especially with the current research showing that 1 out of 68 children are born with autism. But addressing autism with a call to be "more aware" is not enough anymore.

For example, on April 2 for International Autism Day, Apple galvanized efforts to change perceptions of autism--with some of its new apps. Instead, they seek to to call it: Autism Acceptance Month. I wholeheartedly applaud their efforts. Yet I would add that if the statistics are so high for this developmental disorder, we must not only be "aware" or "accept," but we should friendship. There is a ladder in relationships: first to be aware of another human being, then accept them, but the next step is true friendship. It's time for the world to climb a little higher.

Eleven years ago we learned that our dear three year old son was one of those children in the statistics, and we reservedly, reluctantly started the "autism journey." Blogpost from last year: My Autism Mountain Since I have five older children, the departure from my former parenting experience has been been filled with tutoring turns. I always tell people that I would change the diagnosis for our son, but not for us. He has been our mentor for learning some of the most important lessons of life--how to forgive with no grudges, sing with uncommon gusto and reverence, love boundlessly, to unfailingly, without trepidation, try new endeavors--to just name a few.

Peter, his brother, and a friend, Chase Moore, playing the uke last summer with Elias. They are giving a concert and singing "You are My Sunshine" together. Kids with autism can learn new things--perform, create, tell hilarious jokes. More than anything, they will never judge you, but will love you unconditionally--perhaps with the greatest loyalty you have ever known.
If you would like to adopt a new friend who has autism, I will share a few observations that might help you understand your new friends a little better:

Your new friend can do much more than you think they can!

When Elias was about five or six years old, we were taking our other children skiing in Utah, Sundance Ski Resort, to be exact. Our priority and main undertaking of the day? To teach Elias how to go down a bunny hill, gliding up on the rope tow. After a few times of being pulled up on the row tow in the morning, with everyone's arms being fatigued, my husband suggested  another option. How about trying the small ski lift?  I winced. There was no way, I thought, that he could possibly even get on the lift. He would fall, the lift would hit him in the head. The skis would tangle up. I knew that option would never work. But with some coaxing, my husband finally convinced me to have him try. Result? Elias was flying down the small ski mountain with his brothers a few minutes after he skillfully got off the ski lift.

Never to stop at one level of success with our son, my husband suggested that we try the regular ski lift. Again, I cringed. Couldn't we just be content with this small ski lift? But his older brothers wanted to accompany him. Everyone assured me they would be right next to him. Again, Elias surpassed my expectations. By the end of the afternoon of skiing, he was soaring down the ski slopes, with his brothers and dad by his side.

I looked at him on his last run of that monumental day, stunned at what I had seen transpire in a few short hours. It was a day I will never forget. As a parent with a child with autism, it changed me. I realized that I was the one holding him back. He was capable of so much more than I thought possible. To see him enthusiastically ski down the slopes with his family was, well, transforming to me. I saw his smile and joy as he bounded down the mountain. And I vowed to not judge his abilities again--to see the broader view. I promised to try to give him all the experiences I could to reach his potential. I knew, in that moment of seeing him ski down that mountain, that there was so much more depths to excavate than I could dream or imagine.

Often people will ask me how to talk to Elias, but I would only say, "Just be a friend." Listen with added sensitivity. If you are a parent, encourage your children to invite others who are out of their normal circle of friends. Strive not to only to be "aware" or "accept." Move to the next level--a higher ground. Be a friend. And if you feel fearful that you will not know what to say, trust your heart. Your new friend will teach you how.

Skiing with our son, Elias, a few years after he learned how to ski. He is just one of "the gang."
I learned a long time ago that he is never fearful to try to new things. He enthusiastically jumps into new waters, without fear or reservation.  This is Elias after I learned to get out of the way, about age six.


Elias, sandboarding down a sand mountain in Doha. I love his fearlessness and courage to try new things. His joy and excitement is infectious. This is a picture of him this past winter. No ski hills, but hey, you gotta bloom where you are planted--even if it is in the sand! Blogpost: Celebrating Sand


This week in Doha, Qatar, Elias and his friend, Megan, at the Sailing Regatta Club--gliding away in the gusts and gales of the turquoise Persian Gulf.. Last year in a sailing class, he steered me an hour away from Doha to an island. I think I already knew he can leap over my paltry expectations, but somehow I still get surprised at his successes. I often wonder what people would be like when we do not limit them--especially people with disabilities. 

As my good friend, Dick Jacobsen, says about raising typical children, "Move on over, and get out of your kids' way." I am trying, every day, to move out of Elias's way. I have learned that I do not want to block him because he never ceases to amaze me. That is one of the startlingly glorious things about raising a child with autism. There are points in the journey when you realize that you could never have predicted or imagined their successes. I try to cheer by the sidelines, getting out of the steering controls. I have no doubt he will continue to navigate many more beautiful places for me to see--in his heart and in the world. 

I am hoping that others will not only want to be aware of him, or even accept him. But they will see this amazing person who can be their friend.