A few weeks back, I got in one of my Google search term stats “I wish I didn’t have Asperger’s”. It’s not the first time I’ve gotten something similar sadly. But, this time I haven’t been able to stop thinking about it. I don’t know for sure which post of mine they found but I do know it wasn’t what I want to say to this person. I spent some time talking with some blog friends of mine…and we came up with the idea of all posting a letter to this person with a title that would get Google to pull something positive.
Her e-mail made me sit back in my chair and think. Those of us who write online know there are all sorts of ways that direct people to our blogs. One of the top search terms that sends people my way (after several variations of “Try Defying Gravity”) is “Squirrels In My Pants”, thanks to a post I wrote using that song. I feel terrible for the people looking for Phineas and Ferb who have somehow stumbled upon me and my stories.
But this search term “I wish I didn’t have Asperger’s” is different. And it made me stop for a moment.
Who wrote this?
Was it a child with Asperger’s who was struggling and in pain? Was it a parent responding to a statement made by their child? Was it a teacher? An adult? Someone with Asperger’s looking to counsel someone who was not happy?
Who wrote it?
The thoughts swirled in my head, and at first I wasn’t sure I could write anything. Without knowing the audience, what could I say?
Then I realized it didn’t matter who wrote it. Someone did. And whomever it was needed to know that a) it was okay to search for help and support online, and b) when they searched for that support, they needed to find love and acceptance and understanding.
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But what to say?
I can only speak as a parent of two children with autism spectrum disorder.
I can tell our google friends how incredible my kids are. That with every turn they astound me with what they know and what they can do.
And I can tell them that I know that there are days when it is hard. Very very hard. I watch my kids struggle with conversations and team sports. The things that Dr. Stephen Shore calls “The Hidden Curriculum” – the unwritten social interactions that can confuse so many.
But those struggles morph into incredible insights and perspective and success. I have seen it.
However…
It’s better to hear from the people who know it best.
Listen to Dr. Stephen Shore talk about his life here:
Or click HERE to listen to Dr. Temple Grandin talk about her book Different Not Less, a collection of stories from adults on the spectrum about their lives, their achievements, and their successes.
Or perhaps…just watch this:
To the person who wrote “I Wish I Didn’t Have Asperger’s”…
I hope you’re finding the love, support and hope you need. You have a whole community here to love and embrace you for who you are.
And hopefully we’ll help change your mind.
“Hey, hey Did you ever think There might be another way To just feel better, Just feel better about today
Oh no If you never want to have To turn and go away You might feel better, Might feel better if you stay.” – Change Your Mind by Sister Hazel
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Check out all the incredible Autism Positivity posts linked up HERE
You see, up until now, we’ve stayed away from team sports. I could never see how it could work out. My son is hyper-competitive about EVERYTHING. We read a book about Hot Wheels cars, he looks to the end to see which car wins the race and declares “I’m that car.” We don’t play board games because they never end well. The whole win/lose concept is a tough one for him.
So a team sport? Yikes.
But this year many of his peers were starting to join Little League and I didn’t want him to feel left out. His older brother plays baseball and has since he was five. We’ve spent the past 4 springs and summers at the ball field.
So I asked him “Howie, do you want to play T-Ball this year?”
“Nope.” came the response. “I want to play soccer.”
Now I’m going to let you in on a secret, Coach. I know nothing about soccer. Nothing. Well, I know that in third grade I played soccer for three weeks and quit because it was too much running. I played softball. Less running. My brother and sister played baseball. So naturally, I wanted Howie to play baseball too. But nope, he picks soccer. Of all the sports, I know the least about the rules of soccer. It used to be hockey, but my friend Stimey has taught me a lot.
So…when he said “soccer”, I almost said no. Almost.
“Really? Soccer? Are you sure?”
“Yes. Soccer.”
I started to investigate. I knew we couldn’t play spring soccer in our town league. The kids there had been playing for years already, even at age six. The competition level would be too much.
I had some friends who had played on your TOPSoccer league last year and enjoyed it. And that’s where we landed.
I’m going to let you in on another secret, Coach. Initially, the thought of signing him up for a special needs soccer program was hard. Clicking that link off the main soccer page wasn’t easy. But…acceptance starts at home. I know what my son can and cannot do. Any other league but yours would be setting him up for failure.
And I would be failing him more if I didn’t do it at all.
I told him I had signed him up to play. This was about a month ago.
He has asked me EVERY SINGLE DAY when soccer was going to start.
Can I tell you again, Coach, I never thought we’d make it here?
From the moment he stepped on that field, he was home.
You welcomed him in, paired him with a helper, and off he went. Surrounded by friends – new and old.
He ran up and down that field. He clapped for his “team” and he smiled every minute.
He scored two goals. You made sure of that. You gave him high fives and cheered him on.
You want to talk inclusion? For the first time, my kid was a part of something.
High fives all around
Clapping for his team
Focus...and...
"Another goooooooooooooooal!"
Next week may be different. I don’t know.
But you know what? I can’t wait to find out.
Is it Sunday again yet?
See you on the soccer field.
Sincerely,
Alysia (Howie’s mom)
“Take me out to the ball game Take me out to the crowd. Buy me some peanuts and Cracker Jack I don’t care if I ever get back…” – Take Me Out To The Ball Game
A few months ago, he asked me “Do you wish you had my brain?”
Yes. Yes I do.
“mistreated, misplaced, misunderstood miss “no way, it’s all good”, it didn’t slow me down mistaken, always second guessin’ under estimated, look, i’m still around
pretty, pretty please don’t you ever, ever feel like your less than less than perfect. pretty, pretty please if you ever, ever feel like your nothing you are perfect to me.” – Perfect by Pink (family show version)
And check out the amazing Sunday at Adventures in Extreme Parenthood. She started this awesome special needs Ryan Gosling meme and every Friday bloggers link up with their own Ryan Gosling pictures. You HAVE to read them.
So I can show them that there are other families just like ours.
So they know that the stigma does not exist in our house.
So my boys know that what makes them different makes them special.
So their brother sees that we’re part of something global.
So he feels less alone.
So WE feel less alone.
On our first World Autism Awareness Day, we looked like this:
April 2, 2010
Then we looked like this:
April 2, 2011
And today we look like this:
April 2, 2012
I can see the progress in these pictures. I can see the hard work and the tears and the love.
When we shine a blue light on our house, we are shining the light on those beautiful faces.
Light Up The World
I light it up blue for them.
“Lay it all down Got something to say Lay it all down Throw your doubt away Do or die now Step on to the plate Blow the door wide open like up up and away
Let’s light up the world tonight You gotta give up the bark and bite I know that we got the love, alright Come on and light it up
Light it up tonight” – Light Up The World from Glee (original song)
Try Defying Gravity 