benefits package

 

 

 

 

 

 

 

We were at the playground above the soccer field again last week, you know .. NOT playing soccer  .. when we bumped into a dear friend’s father. I didn’t know him, but he was watching my friend’s young daughter while her son played soccer (on the team that Brooke was supposed to be on). The little one came running over to me on the playground, and my friend’s dad came over to introduce himself.

 

When he saw Brooke in her team shirt, soccer shorts, cleats and shin guards he made the (not unreasonable) assumption that she should be, well, oh, I don’t know .. playing soccer, maybe .. with the other kids. He smiled as he cocked his head her way and asked if ‘someone had a little attitude’ this morning. I bristled a bit, but kept in check and smiled back as I explained the situation and why we were taking some time out.

 

He was very kind and very inquisitive. He wanted to be educated about autism and what it actually means for Brooke.  He asked a lot of questions. Since I’ve dragged out my soapbox and preached about how important awareness is to our kids (read more here) I hardly feel like, no matter how emotional I may be at any given moment, I have the option of shirking my responsibility to educate people who are asking to be educated.  And so I did my best to answer his questions as thoughtfully as I could.  And then he threw me for a loop.

 

“What,” he asked, “is the upside to her autism?”

 

No, seriously. That’s what he asked. I stammered. I stuttered. I bit my tongue because quite frankly the first thing to come to mind was, “Are you (expletive deleted) kidding me?”  

 

But he was still looking at me with a kind, open face and he was waiting patiently for me to respond to his question. So I fought impulse number two which was something along the lines of, “Well, gee, if she were in a wheelchair we’d get to park in those great handicapped spaces, but bummer, she doesn’t get that.”

 

Think, Jess, think. So I did my best to talk about how the ability to maintain a single minded focus had produced some of the world’s most talented and influential scientists, musicians, writers, researchers, artists, etc. I told him that it’s often said that Einstein was likely on the spectrum. I didn’t even remember to mention Beethoven and Newton. I was fumbling.

 

As we spoke, I watched Brooke. She was digging in the sand alongside a group of slightly older girls. They were all chatting happily and teasing and joking with each other. And she was digging. Alone in the middle of a group of girls.

 

So what is the benefit to Brooke? What about having autism is positive for Brooke?

 

Well, there are all of the wonderful people that are in her life, I suppose. I can’t discount the amazing benefit of having had all of these dedicated teachers and therapists caring for her.  Many of them are truly as invested in her success as we are. She is surrounded by love and lavished with praise all day every day.  Hey, that’s good, right?   

 

I wish I could say that there is more in it for her. But at the tender age of five, I have yet to see much of an upside to autism for Brooke. Most of the upside is what I see her do despite autism, not because of it.

 

But I can say a lot about what it has done for those of us who love her.

 

The day that we got the initial diagnosis, Luau and I sat in the parking lot of the medical building and tried to absorb our shock. I remember sitting in the car and saying to him through tears, “If nothing else, no matter how this all turns out, the experience will have made us all better people – you, me, Katie, all of us.”

 

Well, it did. And it did in spades. We are all more sensitive, more aware, more caring, more invested, more connected and far more compassionate than we ever would have been without having had the opportunity to experience the world differently. It feels awfully self centered to put it in those terms, but I can’t deny the truth in it.

 

Katie’s homework this weekend was to begin to write what her teacher is calling their ‘family vine’. For each of her family members, she had to write three unique contributions we each make to the family. If you’re wondering, I make all the money, buy her clothes (and shoes), and make her feel better when she’s sad. Thankfully, not in that order.  

 

Brooke, she wrote, makes us laugh, gives us love, and makes us better people and better friends.   

 

Amen.

 

~ Oh, and a post script. That picture up top? This is a child who wouldn’t jump from a two and a half inch mat to the floor eighteen months ago. Baby steps have turned into leaps and bounds (literally). I now have my heart in my mouth each time that my little Evel Knievel takes flight, and I couldn’t be happier!

 

(Click on it if you’d like to make it bigger!)

 

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3 thoughts on “benefits package

  1. To be honest, and I hope not insensitive, I love that he asked that. It reminds me of the article you posted a link to a few posts ago (nope, can’t remember the name or author.) What I can remember his that the author wrote of having aspergers that he wouldn’t trade his exquisite sense of the world for anything. In a culture obsessed with categorizing (a little ironic, given the negative light in which the organizational obsessions that can accompany autism are cast) it’s easy to forget that there is ALWAYS more than one right way to do… anything. Brooke’s way is just another way – with it frustrations, sure, as she navigates this culture, but perhaps with rewards that have yet to reveal themselves. I remember when you wrote about how hard you work to “keep all your ducks in a row,” and how in your case that’s viewed as highly successful time and life management, whereas in Brooke’s case similar behavior was seen as a disorder. Maybe her linear skills have yet to manifest themselves in a rewarding way for her. Maybe… anything.
    Also, ROCK ON little acrobat!

  2. I agree with Sarah, but I find it fascinating that he thought to ask you that. I would really be curious as to the exact motivation behind that question- did he have an expectation as to what the upside might have been? Just another question that I’m sure we’ll never be able to answer…

  3. I just started reading your blog… (came over from TPGA)… my daughter is just 2.5, so I started reading older posts…

    The initial “attitude” comment, may have started us out on the wrong foot… I’m pretty sensitive to those things these days (having had comments made and stinky eyeballs from mothers at the park)… and I never think of the right thing to say in the moment…. however, I would rather somebody was honestly inquisitve than ignorant. And you hit it on the nose. For Sarah, the people in her life… the moments that everybody would take for granted… I email to about 8 therapists. And they jump up and down WITH US.

    For us, I think the tendency is to tear everything down to its smallest component… What is diagnosis? What is toddler and What is just Sarah…. And it’s exhausting… but also, gives us a lot of insight into other people.

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