*** Warning! What follows will have no more than a passing acquaintance with the rules of English grammar and punctuation. It’s 5am and I don’t have the patience to edit. Sorry, Mom. ***
We all have challenges. We all have our little quirks and things that we know will be difficult for us. If all goes well, we learn over time how to navigate through those challenges using the various compensatory measures that we’ve gathered or hobbled together over time.
Let me try that in English. Or with long, drawn-out, comma laden (but hopefully illustrative) prose. How’s that for a sentence? Or a fragment? Hey, you were warned.
I’m short, er vertically challenged. Put it however you want folks, I ain’t tall. I’m 5 foot nothin on a good day (and if you want to stay friends you’ll agree that today is a good day indeed, right? Ah, I knew I could count on you.) Anyway, short. Yes. So I wear heels most of the time. I climb on counters to reach things in my kitchen. I tread water when the girls want to ‘hang out’ at the deep end of the pool. When I go to a movie I base my seat on the height of the person in front of me (which used to be more challenging back in the 80s when I lived on Long Island. Holy high hair issues, Batman!). You get the idea.
I am emotional. Like Mr. Toad’s Wild Ride of ‘Oh dear, is Mama crying yet again?’ kind of emotional. That kind. And so I make some adjustments. I don’t watch St. Jude’s infomercials. OK, I watch them sobbing until Luau comes in and catches me and wrestles the remote out of my hands, but let’s not get bogged down in details. I do give them money because I can’t not. Yup, double negative. I already apologized, Mom. But honestly, I view it as a moral imperative to give those people everything I possibly can.
But when I get the thank you cards, I don’t read them. With all immensely due respect to Marlo Thomas and all of the angels that work with her, I can’t function if I do. I can’t get halfway through the hand written letters from those beautiful children who struggle with so much more than they ever should – the children who wear their bald heads unabashedly, like badges of their incredible courage. I sob. And I can’t stop. So when I see them in the mail, I leave them for Luau.
I’ve always seen growing up as the process of figuring out who you are - part of which consists of identifying your strengths and your challenges. The next part is trying to figure out how to best leverage your strengths and how to most effectively mitigate your challenges to live the best life that you can.
When you add autism into the mix, challenges are par for the course. The magnitude and the quantity may be different, but the process is the same. Identifying them, adjusting for them, continually tinkering to figure out what kind of accommodations work best.
For example, Brooke has a lot of trouble with bright sunlight. So she wears her oh-so-cool pink shades. She is highly sensitive to noise. Therefore we try to warn her right before a loud noise so that she can cover her ears or hum. She gets overwhelmed in restaurants so we always make sure we have an easy escape route so that she can take frequent breaks and walk outside when she needs to.
Mind you, I list these off as though they are so obvious, but each and every one of them has been hard won. Heck, even the sunglasses. Brooke didn’t have the language (or the self awareness?) to tell us that the sun was hurting her eyes. It took time and observation and some terrible days at the pool before it all started to come together. She only started covering her ears about a month ago and the humming thing still hasn’t completely caught on. She can say it in an exact mimic of Mama’s sing song voice – “when we hear a noise we don’t like, we can hum” but she really doesn’t actually do it.
But hey, the restaurants? That one works.
But the point I’m pretty sure I’m still trying to make is that almost all of our efforts to teach Brooke involve giving her the tools to compensate for the things that she finds difficult so that she can live comfortably and happily and her endless strengths and talents and beautiful, fabulous, super duper wowie zowie glorious Brooke-ness can shine through. Wow, that was a run-on sentence to beat the band. Man this ‘to hell with grammar’ thing is really liberating.
And then -
And then there are these transcendent moments when Brooke figures it out for herself. When I don’t even know what the heck just happened (yeah, I feel that way a lot in life) and she has determined what she needed and by God grabbed it. That’s what we do it all for.
At bed time last night, we went through our usual routine. After we snuggled together for a few minutes, I told her I was going to go. She said, “in how many you go?”
Ok, end of story. You do get it, right? Hooray for Brooke.
Wait, you’re still reading.
You didn’t get it?
Dang people, you’re gonna have to get better at this.
Tee hee. Sorry. I told you it’s 5am, right? It’s also Friday and I’m feeling giddy. Sue me.
Anyway, I didn’t have the slightest idea what the heck ”in how many you go?” meant either. Until my little rockstar put her tiny little hand in the air with her fingers splayed and said, “Are you going to go in five?”
“Sure, Baby. Do you want me to go in five?”
“Oh yeah” (the latest version of yes that she’s picked up from school. They love to give her little colloquialisms that make her speech sound a little more hmm, well, colloquial than it might otherwise.)
“Ok, I’ll go in five.”
So I held up my hand like hers and I counted down from five, one finger at a time. When I got to a closed fist, I kissed her and told her I loved her for the millionth time. I then added that she is the smartest little five year old smarty pants I know, and then I walked out.
She needed some warning. And she knew it. So she asked for it. And she got it. And then she was ready.
Damn, is she ready. (I just hope the world’s ready for her.)
OK, Mom. Exhale. The worst is over.