Thursday, March 26, 2015

Hope and Faith, Reaffirmed

It has taken me a few days to get this written down. Sometimes it's the magnificent, make your heart burst with joy things that are harder to get right while writing. So I took my time and thought about what to say, and how to say it, because I want you all to get it - I want so much for you to feel the warm, fuzzy reaffirmation of hope and faith I felt when it happened. 

For her birthday celebration Miss Thing (a.k.a. Sarah) chose to go see Insurgent with two friends. Her BFF, Miss A, and her sweet friend Miss E were invited without delay. We decided long before Friday that I would accompany the trio and stay for the movie. Reason one was because they wanted to see an evening showing and I'm not okay with three girls at a movie theater on a Friday night without an adult. Reason two being Miss E has special needs and as much as Sarah wanted her to be there she also knew Miss E would almost definitely need a break from sitting in a dark, fairly loud theater and she really didn't want to miss parts of her "birthday movie". There was no way I was going to complain, I NEVER go to the movies so this was a treat for me, too! And, I absolutely adore my trio of silly, funny, sweet girls so spending an evening hanging out with them was a privilege. (Plus, let's face it, I'm going to blink and Miss Thing will be waaaay over going anywhere with her mom willingly!)

Miss E either called or texted Sarah half a dozen times between school letting out and the time we were to meet at the theater, very worried she would be late. My girl reassured her every time that her mom would make sure she wasn't and she wouldn't miss 'the party'. Miss E literally bounced into the lobby when she arrived and proceeded to hug Miss Thing and Miss A while squealing and laughing. Her mom was nearly as giddy, thanking the girls over and over for inviting Miss E. 

And this is when Hope & Faith Reaffirmed moment one blindsided me. Both girls just waved Miss E's mom off and said "She's our friend, of course we want her here. Come on (Miss E) let's go see what snacks look good." And then they flanked their friend and trotted off to the concession stand. Miss E's mom had the most peaceful, joyful expression and we were both just a touch teary. Why? Because watching the three girls peer into the candy display and giggle together wasn't extraordinary to them, but it was for Miss E's mom and I. As much as I loathe the word normal, that's what it was for the girls - a normal tween night out at the movies. And we both know how very uncommon it is for our minions with special needs to be completely accepted and included in their peer groups.

I made my way over to the trio who were now at the counter, a line of five or six deep behind them. Miss Thing and Miss A got their candy and drinks and then prompted Miss E, "Your turn. You have to tell him what you want." Miss E ordered and then looked to her friends and tried to hand off her purse to them.

Hope and Faith Reaffirmed moment two happened. The girls both shook their heads no and gently pressed Miss E's purse back in her hands. "Ok E, your mom put your money in your purse, get it out and give it to him. He's going to give you some money back so keep your purse open." A couple of older girls behind us in line were sighing and tapping their foot. While Miss E pulled out cash to pay the girls turned and said nicely but firmly, "Our friend needs a little longer to finish. Be patient." I wanted to whoop and high five them but I figured that might be embarrassing to them so instead I smiled at the guy working concessions and thanked HIM for his patience. He grinned huge at Miss E and said, "Take your time. It's cool." Okay, I might have briefly considered jumping over the counter to kiss his cheeks and hug him but again, that probably would mortify three twelve year old girls so I refrained.

Miss E made it through the first forty minutes (with Miss Thing's arm over her shoulders and her head on Miss Thing's shoulder) before it was obvious she needed a break. She and I headed to the lobby to walk and talk. While meandering she was stopped THREE TIMES by other kiddos who go to their school with "Hey E! What movie are you seeing?" and other greetings. She told them Miss Thing picked 'an adult movie, not a kid cartoon movie' and she wanted to walk. Hello moment three of Hope and Faith Reaffirmed. All the kiddos just grinned and said yeah, sometimes they didn't want to watch a whole adult movie either before saying good-byes and heading into see their show.

We went back after fifteen minutes or so. Miss E promptly put her head on Miss Thing's shoulder and we finished the movie. We went to the lobby to meet her mom where she demanded to stay with Miss A and Miss Thing. The girls reminded her she was going to Florida the next day and would they would see her after she got back. Miss E decided Florida wasn't as good as being with the girls and darted off to hide around the corner. Her mom and I laughed a little and watched the girls follow behind her. Within a few minutes all three were back and the girls had promised Miss E they would come see a kid movie when she got home. There were more hugs, and then I love yous and you are my BEST best friends shouted by Miss E as we headed to our cars.

And then my girl and her BFF slapped me upside the head with Hope and Faith Reaffirmed moment fourI told the girls how proud I was of them for treating Miss E the same way the treat each other while still helping her when she needed it.  They both looked at me like I had three heads and said, "Why wouldn't we?!"

That, all of that above, is what acceptance looks like. That is the goal. And all of that most certainly reaffirmed my hope and faith for the future. 

Friday, March 20, 2015

Skip Lighting It Up Blue - Please Do This Instead

For a number of years I have asked everyone I know to participate in Light It Up Blue each April, the world wide autism awareness event promoted by Autism Speaks. This year, and every year after, I'm asking you to SKIP THE BLUE. Let me explain why we are no longer as a family participating in this campaign and instead asking you all to do something that will truly make a difference instead.

Over the past year, as Christopher has inched closer to adulthood and Ryan approached puberty, I realized that Autism Speaks does not represent what THEY need and desire in their lives, now or going forward. We have always been open about their autism diagnosis and treated it as just another part of them and their unique, wonderful selves. They don't need to be cured, they don't need an organization that speaks for them instead of listening TO THEM. I am so far past caring what caused their neurological differences that each time I see a new article tossing out another cause of autism I want to scream. 

And I am over autism awareness. With the amount of news stories, television shows and movies about autism and the people with autism you would have to be a citizen of a third world country or live under a rock to NOT be aware of autism. And here's the kicker - in the nearly seven years since Christopher's diagnosis I can assure you awareness hasn't been a big issue. ACCEPTANCE, on the other hand, is the never ending battle. My awesome, smart, loving boys don't need you to wear blue one day a year and be aware autism exists. What they need is for you to see and treat them as individuals with goals, dreams, feelings and desires who sometimes need help navigating their way in the world. What they need is for you to LISTEN to them, to treat them with dignity and respect and ACCEPT them just as they are, differences and all.

Does this mean you must ignore their over the top volume when they are talking with you? No. Does it mean you give in to their every whim and want? No. Does it mean you do not expect them to treat YOU with respect and understanding? NO. What acceptance means is that you value them as the unique individuals they are and realize what makes them different doesn't negate their worth as a person or to society as a whole. 

Instead of donning your blue and changing your light bulbs for a day to show you are aware, I'm asking you to do something that will make an impact every day. I'm asking you to take some time and honestly think about how you treat the people you encounter who are not like you. I'm asking that you take a few minutes and really asses your actions and behaviors towards people on the autism spectrum. Do you LISTEN to them when they speak, whether with words, assistive technology, their hands or their actions/behavior? Do you undermine their value by presuming they are incompetent and have nothing to offer to you and society? Do you mock and snicker at the person you see stimming? Do you let your children and friends mock and snicker at them or do you use that opportunity to promote acceptance of differences, no matter what they are?

So, skip the blue this and every year. Instead do something that shows the world you are more than aware, show the world your autism acceptance.