At the launch of this journey, when Life announced our path would be one called Autism, I declared:
"I will not let my daughter's disAbilty rule our world! We will live fully! Richly! We will not cow from society! We will not hide from opportunity! Damnit! We will embrace this difference of ours! Head-On! All of It!"
And, we have. Best of our ability.
Along with declaring to live life full on, I borrowed on past personal growth work and declared we would NOT take on society's baggage about our differences. For the most part we quickly left presummed attitudes about our differences in the dust. I knew it was all about OUR attitude.
Times are changing.
No longer are we little and weird. But, now, we are BIG and WEIRD. I'm having to adapt here.
For the first time in 15 years, I am giving extra thought and sometimes ruling nada on opportunity. Places to go, do and see. Sometimes I am just not up to it. I lack the stamina. The wherewithal. Is this age? If so: Mine? Or, hers? Or, both?
Sometimes I just don't want to deal with the spontaneous commotion--my 18-year-old leaping from the restaurant table and breaking out into an odd dance to the jazzy Muzak tune. Somedays I am so over ADHD. Way too often, I withdraw my attention from the supermarket shelves only to realize:
"Oh. No. What. Has. She. Done. Now?!"
Quickly, I furtively glance wide eyed at the person across the aisle. Are they smiling? Looking shocked? Confused? Fearful? Angry? What do I say?
It depends on their reaction. Grace has an acute sense of smell. It's an autism thing. And a pretty young woman's freshly shampooed long hair is so tempting. SNIFF! So are all sorts of other human odors. Unfortunately. Or, if the pretty girl across the aisle is blonde, I can almost guarantee it's a case of facial recognition issues and Grace has once again mistaken a a stranger for one of her sitters. Too late, she's stolen a peck on the cheek or a caress to a stranger's face. I hope for the stranger's good graces toward myself and my daughter. Thankfully, usually I get it.
I can't let these behaviors stop me from living. From getting out. And I've not. But some coping mechanism is needed. Quickly. Something besides my mental coping attitude. Something that connects with the person doing the staring and sends a signal.
I now get it. I now understand the mother I used to see with the older daughter. The daughter who was always turned in the opposite direction than her mother who was headed into the gym or shopping at the mall. While the mother was on a mission, the daughter had her own, to unabashedly look around, no inhibition and connect eye to eye, gawkingly, much like a curious toddler, with everyone within her gaze. The mother, she looked straight ahead, fixated on whatever her aim that day, seemingly very intentionally ignoring those who looked at her daughter and then at her. Or--I know that feeling--to quickly make a decision while she has a moment free to do so.
Recently, I saw a sweet-faced girl with a visible disAbility. I looked into the young girl's face and smiled, acknowledging her presence, her worth, and then I looked at her mother. The mother looked back, determinedly holding my gaze and smiling. And, then, she winked. I wasn't sure that that wink meant....
"Hey! It's okay!"
"Hey, I'm going to wink at you and disarm you so you'll stop staring."
I wasn't staring, but I bet it may have seemed that way because so many people before me had stared.
..."Hey, we are different! Yes! But we are okay! Now, go along, okay?! Go, along, you! Turn around and continue your business...."
There's cards. I had them in my wallet for years. I think I've given out one of the business-sized ditties in all this time. They state that this is autism and some enlightening facts and a web address should they be so curious to learn more. I've heard of people wearing tee-shirts. "This is autism."
My latest fantasy:
"Hello! Saw you looking our way. This is autism. We are 1 in 88. Look what we do with our special difference," and then list my daughter's website address, www.GraceGoad.com
My friend, Ken, inspired that idea as he noticed a woman in Whole Foods gawking at Grace.
"She's an artist! Leisa, hand them one of Grace's art show flyers!"
I complied. The woman smiled. Later he explained he was trying to disarm her, wake her up from her rude, openly fixed curiousity to see something other than the perception of abnormalcy.
Sans tee-shirts and card distribution, I'm not sure what it's going to be, but I think I need a strategy because Life as we've known it is morphing. Ignoring is only taking us so far these days.