Autism
For other posts on autism, see:
Rescuing Grace: http://wakeofechoes.blogspot.com/2011/02/rescuing-grace.html
Ten Words: http://wakeofechoes.blogspot.com/2012/04/ten-words.htm
lMy Eleven-year-old Hero: http://wakeofechoes.blogspot.com/2011/04/my-eleven-year-old-hero.html
World Autism Awareness Day: http://wakeofechoes.blogspot.com/2012/04/world-autism-awareness-day.html
My Opinion: Selfish, Biased and Utterly Honest http://wakeofechoes.blogspot.com/2012/04/my-opinion-biased-selfish-utterly.html
Rescuing Grace: http://wakeofechoes.blogspot.com/2011/02/rescuing-grace.html
Ten Words: http://wakeofechoes.blogspot.com/2012/04/ten-words.htm
lMy Eleven-year-old Hero: http://wakeofechoes.blogspot.com/2011/04/my-eleven-year-old-hero.html
World Autism Awareness Day: http://wakeofechoes.blogspot.com/2012/04/world-autism-awareness-day.html
My Opinion: Selfish, Biased and Utterly Honest http://wakeofechoes.blogspot.com/2012/04/my-opinion-biased-selfish-utterly.html
I'm Jumping On the Spectrum
āWash your hands for dinner!ā
Drew comes toward the sink and then takes a step back.
āMom. I canāt.ā
I look at the faucet, covered in soap suds.
āHang on,ā I say, liberally dousing it with water until the bubbles are completely gone. āThere you go.ā
He steps up to the sink and washes his hands.
Bubbles. He canāt even stand the word. The sight of them makes his stomach twist. He forces himself to tolerate hand soap, but prefers hand sanitizers that donāt create suds. I shudder to think about how he washes his hair ā or doesnāt. There was a time when I would have tried to understand ā tried to rationalize it for him. Theyāre just bubbles. He likes clean things ā whatās cleaner than a soap bubble?
I donāt do that anymore. Iāve learned that sometimes itās best to jump on the spectrum with him.
How can I say that? Isnāt drawing him toward a typical life view the best thing for a kid whoās so āhighā on the spectrum that his diagnosing doctor ā ironically ā described him as ājust inside the bubble?ā
Yes and No. Yes and KNOW. Iām learning to walk that line; Iām learning to know when to accept and when to push. Desensitizing him to sensory problems works best very slowly, at his own pace ā not mine. Iām learning to accept that Iāll never do it perfectly ā that Iāll have good days and bad days. Just like him.
With autism, we live in two realities, with two cultures in our house. I canāt let go of one, even while I cling to another. I have always known this by instinct, but didnāt 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. Itās 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; itās an overt acknowledgement of something that happens in the heart of a parent. Lisi will grow up as American as you and I. Sheāll wear American clothes and speak English with an American accent. Sheāll wave a flag on the Fourth of July, learn her states, learn her presidents.
Sheāll 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 donāt feel like they fit into our world, kids who fit into two worlds. Sometimes we feel those difficulties almost by instinct. Sometimes we donāt.
Imagine that Lisi is with her mom at a park shortly after arriving from China. Sheās 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: āMaybe she should make more of an effort to speak English.ā
That wouldnāt happen. (Youāre thinking it; Iām saying it.)
Hereās what would happen, though; hereās the kind of thing that HAS happened:
Iām 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. Iām talking to another mother and make a casual comment, wishing my son could join in their fun. āMaybe he could make more of an effort,ā she says.
She might as well suggest that he speak Chinese.
People donāt mean any harm, but sometimes they forget. Drew looks typical. I hear it so often: I canāt even tell he has autism!
Itās a blessing ā I never forget that. Heās likely to function in our world without as many struggles and obstacles as he might have had. Heās likely to communicate with people who think heās just slightly different, never suspecting thereās 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 doesnāt. Theyāre confused by his intelligence. Theyāre confused by his ability to talk knowledgably about favorite topics. Theyāre confused because heās done such a great job of overcoming fears, learning to deal with the unexpected ā fire drills, changes in routines, random noises, unfamiliar flavors.
He does so well, that people forget ā and then they get frustrated when his autism starts showing. They get frustrated when he doesnāt move quickly enough, when he gets anxious, when he has to be told twice. They get frustrated when he doesnāt remember, or when he remembers too well. They get frustrated because heās so honest ā (all I can say is, if you ask someone with autism a question, donāt expect him to tell you anything other than the truth!) People get frustrated when he doesnāt laugh at their jokes, when he doesnāt like their nicknames or their relentless teasing. They donāt like it when they ask: āHow are you?ā and he doesnāt 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 itās a real thing ā not just a label.
It breaks my heart. My son tries so hard every day and heās still getting, āNo, youāre not quite normal enough.ā
I canāt imagine someone asking Lisi to abandon her race ā to completely reject her culture and pretend to be white. And the thought of someone treating her as if sheās 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 ā will she ever doubt that she is wholly Chinese and wholly American ā 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 Iām jumping on the spectrum. Iām a typical parent ā and I want my son to live as much of his reality as possible in a typical world. Iāll hold the bar as high as I can and Iāll be a patient cheerleader.
But heās always going to have autism ā and so Iāve decided that I am going to be autistic too. Iām never going to demand that he be what he canāt. Iām 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 Iām 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.