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I'm Jumping On the Spectrum

“Wash your hands for dinner!”

Drew comes toward the sink and then takes a step back.

“Mom.  I can’t.”

I look at the faucet, covered in soap suds.

“Hang on,” I say, liberally dousing it with water until the bubbles are completely gone.  “There you go.”

He steps up to the sink and washes his hands.

Bubbles.  He can’t even stand the word.  The sight of them makes his stomach twist.  He forces himself to tolerate hand soap, but prefers hand sanitizers that don’t create suds.  I shudder to think about how he washes his hair – or doesn’t.  There was a time when I would have tried to understand – tried to rationalize it for him.  They’re just bubbles.  He likes clean things – what’s cleaner than a soap bubble?

I don’t do that anymore.  I’ve learned that sometimes it’s best to jump on the spectrum with him.

How can I say that?  Isn’t drawing him toward a typical life view the best thing for a kid who’s so “high” on the spectrum that his diagnosing doctor – ironically – described him as “just inside the bubble?”

Yes and No.  Yes and KNOW.  I’m learning to walk that line; I’m learning to know when to accept and when to push.  Desensitizing him to sensory problems works best very slowly, at his own pace – not mine.  I’m learning to accept that I’ll never do it perfectly – that I’ll have good days and bad days.  Just like him.

With autism, we live in two realities, with two cultures in our house.  I can’t let go of one, even while I cling to another.  I have always known this by instinct, but didn’t know how to put it into perspective until recently, when I was inspired in an unlikely way.
 
My niece, Lisi, became an American citizen just over a year ago.  It happened the moment she passed through customs at San Francisco International Airport.  No fanfare; no oath.  Still, the core of my patriotic heart sings anthems when I imagine that moment.  My sister put her on the phone with me that day.  I cried as I listened to her sweet voice, bubbling over the line in rapid-fire Chinese.  Already I loved her.  Already she was my family.

My sister and brother-in-law spent two weeks in China finalizing the adoption that had taken almost two years to achieve.  On Gotcha Day and at the courthouse, there was fanfare; there were oaths.  A week before Lisi became an American, her parents became Chinese.  It’s a custom in China:  if you claim one of their children as your own, the Chinese people claim you too.
 
That custom is more than just a nice sentiment; it’s an overt acknowledgement of something that happens in the heart of a parent.  Lisi will grow up as American as you and I.  She’ll wear American clothes and speak English with an American accent.  She’ll wave a flag on the Fourth of July, learn her states, learn her presidents.

She’ll also always be Chinese.
 
In a perfect society, paradoxes of race and culture would never create problems, only opportunity. But we see it all the time:  kids who don’t feel like they fit into our world, kids who fit into two worlds.  Sometimes we feel those difficulties almost by instinct. Sometimes we don’t.

Imagine that Lisi is with her mom at a park shortly after arriving from China.  She’s playing in the sandbox with another child, whose mother comes to sit by my sister on a bench.  After a few minutes of listening to Lisi chatter happily in Chinese, the mother turns to my sister as says:  “Maybe she should make more of an effort to speak English.”

That wouldn’t happen.  (You’re thinking it; I’m saying it.)

Here’s what would happen, though; here’s the kind of thing that HAS happened:

I’m at a social gathering and my son is standing awkwardly to the side while others his age joke and laugh.  They run and toss a Frisbee, stop to pet a dog, grab a soda, talk to their parents and then rejoin the conversation of their peers, never out of step.  I’m talking to another mother and make a casual comment, wishing my son could join in their fun.  “Maybe he could make more of an effort,” she says.

She might as well suggest that he speak Chinese.

People don’t mean any harm, but sometimes they forget.  Drew looks typical.  I hear it so often:  I can’t even tell he has autism!

It’s a blessing – I never forget that.  He’s likely to function in our world without as many struggles and obstacles as he might have had.  He’s likely to communicate with people who think he’s just slightly different, never suspecting there’s a label, a diagnosis for what they see.

But there are also those who KNOW he has autism, but expect him to act like he doesn’t.  They’re confused by his intelligence.  They’re confused by his ability to talk knowledgably about favorite topics.  They’re confused because he’s done such a great job of overcoming fears, learning to deal with the unexpected – fire drills, changes in routines, random noises, unfamiliar flavors.

He does so well, that people forget – and then they get frustrated when his autism starts showing.  They get frustrated when he doesn’t move quickly enough, when he gets anxious, when he has to be told twice.  They get frustrated when he doesn’t remember, or when he remembers too well.  They get frustrated because he’s so honest – (all I can say is, if you ask someone with autism a question, don’t expect him to tell you anything other than the truth!)  People get frustrated when he doesn’t laugh at their jokes, when he doesn’t like their nicknames or their relentless teasing.  They don’t like it when they ask: “How are you?” and he doesn’t respond quickly enough.  They think he should know how to shake hands, maintain eye contact, catch a football, ride a bike.  They know he has autism, but they have a hard time remembering that it’s a real thing – not just a label.

It breaks my heart.  My son tries so hard every day and he’s still getting, “No, you’re not quite normal enough.”

I can’t imagine someone asking Lisi to abandon her race – to completely reject her culture and pretend to be white.  And the thought of someone treating her as if she’s somehow less of an American because of her race or culture also makes me livid. I know her parents feel the same way.

But will Lisi always understand this fierce loyalty we feel toward her – will she ever doubt that she is wholly Chinese and wholly American – and that this is just how it should be?

I hope the fact that her parents are Chinese now too helps her understand how fully and unconditional their connection is.
 
Drew and Lisi
And that is why I’m jumping on the spectrum.  I’m a typical parent – and I want my son to live as much of his reality as possible in a typical world.  I’ll hold the bar as high as I can and I’ll be a patient cheerleader.

But he’s always going to have autism – and so I’ve decided that I am going to be autistic too.  I’m never going to demand that he be what he can’t.  I’m never going to ask him to pretend, or hide his personality quirks.

I will be honest and I will let my own personality quirks show.  I will not pretend to be something I’m not.  I will learn to back off when he needs space but I will always be there when he needs me.  Autism will never embarrass me.
 
I will be his advocate.  I will be a fierce mama bear.  And I will be on the spectrum with him for as long as I live.
  


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