What does Autism Awareness Month mean to us?

So I “hemmed and hawed” over when to finally launch this blog.

Should I publish my first post on my 36th birthday? Well, February 12th came and went. I had no blog post. I didn’t even have a website.

Should I go live at the start of Spring? A springtime “birth”, right? Welp, there goes March. Tick tock. Tick tock.

I definitely suffer from what’s called “Analysis Paralysis”. If it ain’t perfect, it’s obviously broke. The combo of my procrastination and perfectionism is a total hot mess. Ugh.

I take long jogs around my neighborhood. I practice my Sun Salutations. 10 per day. I read. I paint my living room, painstakingly having selected the perfect “greige”. I surf the net for blogging best practices. I spend an hour on Pinterest looking up “oil pulling” (sounds bizarre I know, so I’m naturally into it).

I have endless, one-sided conversations with my cat.

April rolls around. Light bulb! I’ll publish this blog during Autism Awareness Month. Perfect. So appropriate. But after thinking more on this… Autism Awareness Month, it occurs to me; what the eff is Autism Awareness Month anyway?

#autismmomfail.

I guess someone out there somewhere, thought the 30 days in the 4th month of every year was a good time to go ahead and be “aware” of autism. Personally, I would add “acceptance” and “support” to the just plain old “aware”.

But in staying with the awareness motif for this month of April (and of course posting this on the very last day of the month, no less) I thought I would highlight some ways I am aware of autism.

Here are 24 ways I feel awareness every day:

  1. It’s in the PRIDE I feel. I’m so proud of both my boys. It is their lion-hearted courage. They overcome sensory challenges that would bring most people to their knees. I’m proud of their compassion, humor, creativity, their quirkiness. Pride. Is that different from any mother’s daily awareness or experience?
  2. It’s those deep connections with my own personal tribe of special needs moms. They just get it. They don’t bat an eye when my kid sticks his grimy index finger down into the untouched and pristine birthday cake frosting. In fact, they chuckle alongside me.
  3. It’s spending hours at the library, researching special education laws and rights. Determined to get him the accommodations he needs at school. Convinced, I’m missing something.
  4. It’s the fire in my belly when I read yet another article warning the public about the danger of vaccines. Beware folks! Vaccines will give your child the dreaded autism! Stfu already. I’ve had it, and I’m done explaining why I’m offended.
  5. It is the face people make when I disclose my child is autistic. Like that emoji with those giant white-circle-eyes. An expression like, ooops. Or yikes.
  6. It’s a cold gray hospital waiting room with your non verbal toddler on your lap who is shaking with fear. Four hours of therapists and four packets of paperwork later… “He’s fine, he’ll grow out of it. He’s just an anxious toddler. And here’s a list of psychiatrists. Choose one, and go from there.”

*OH! Well OK great then! I guess we’ll just roll on up to the nearest psych office where my two-year old can prop his feet up on the couch and probably say something like:

“Well doc, mom and dad were driving me to preschool and they took a left turn instead of the right turn I’ve grown accustomed to, haha! Needless to say, the shit hit the fan… literally!”*

  1. It’s attempting to catch your breath when the grocery store clerk says “Would you like to support our partnership with ‘so & so’ in the campaign to Fight Autism?” Fight autism? What horrible and offensive language to use. Part of me wants to cry but the other part of me wants to punch someone in the penis. Damnit. And I just stopped in for a pack of toilet paper and some kitty litter.
  2. It is a stupid blue puzzle piece. I still don’t get the connection to autism. It feels dehumanizing to me; comparing someone, a human, to a puzzle. A PUZZLE. It’s divisive — they are a mystery to us. They are… puzzling.
  3. It is cutting the grilled cheese into five thousand little pieces because otherwise, he’ll. just. starve.
  4. It’s being told he’s too rigid. His inflexibility won’t serve him going in to adulthood. Right, because I know SO many totally flexible adults who love a completely different schedule every day of the work week.
  5. It’s giggling uncontrollably about absolutely nothing other than the fact that it’s a Tuesday night. And what the hell, let’s just get our giggle on!
  6. It’s showing up to the play date and having to explain that we’re only really interested in using the bathroom. Do you mind if we flush the toilet 4 or 5 times in a row? So is it cool if we check out the light switches in each room? That’d be sweet. Bonus points if there are ceiling fans! But we’re probably only gonna stay for ten minutes after that… Secretly loving that we never stay long.
  7. It is doing a happy dance in the kitchen when your almost eight-year old asks… A QUESTION! “Mom, what are we going to do on Saturday?”… “well first let me give your precious little face a million kisses and a cookie!”. I’ll never take for granted when he asks me a question.
  8. It’s pacing the living room, checking the phone every 5 minutes, waiting for the call from school. He’s hit a teacher again. He threw a pencil across the classroom. He “pushed technology” (his own words when he attempted to knock over the class projector). He ran away.
  9. It’s the tears streaming down his face as he spends hours after school saying over and over again that he’s SO SORRY. JUST SO SORRY, MOM. I’LL NEVER DO IT AGAIN, MOM. NEVER. I’ve been told autistic people lack emotion or remorse.
  10. It is the way he nuzzles into my neck for what he calls “hair tickles”. I’m happy to give him those every time he wants them.
  11. It’s a shared love of music that I’ve yet to find with anyone else. We could spend forever just jamming out to our tunes in the car, volume full blast.
  12. It’s the crushing guilt that I’m not enough. He needs more.
  13. It’s a view of the world through his eyes. Saturated colors, gritty textures, spiraling movements. Buildings and streets that seem alive, pulsating. Discovering the city “his way” fills me with pure, vibrant, energy. Awareness.

  14. It’s the unadulterated heart-filling happiness as I watch him gallop into the lake, shallow for miles, hearing the expressive sounds he makes. A songbird, gleeful, release of sound as he tosses his arms into the air to “throw the water”.
  15. It is finding comfort in the daily repetition. The sameness he craves has brought to life, a love of predictability in me. The “rigidity”, as doctors call it, has become so soothing to us both. Like a soft, warm sweater, worn for years and years. Tried and true.
  16. It’s watching him be completely at peace when he is drawing or painting. His body at complete ease as he draws hundreds upon hundreds of windows. He slides into a repetitive, meditative state. Complete content. And the drawings are stunning. “Windows to his soul”. And I’ve been told autistic people lack creativity.
  17. It’s sitting silently side by side under our cherry blossom tree in the backyard and just feeling the tiny, pink petals that fall from the branches, brushing against our skin on a spring April day. It’s listening to the sound the tree makes when it rustles in the breeze. It whispers to us. It has no words but we keep its secrets, just the two of us.
  18. It’s the freedom of not giving a damn what anyone thinks. The “Other People’s Opinions” correctional facility that kept me prisoner in my youth has burned straight down to the ground after becoming an autism mom. Knowing what really matters versus other people’s perception is what’s real to me nowadays.

Awareness is about developing into who you are instead of what you feel you are expected to be.

I suppose I’m off on a tangent now but yeah, I’m aware. Awareness is an everyday thing for us, not just in April. I guess that is why we forget to “celebrate awareness” every year when Autism Awareness Month arrives. We know no other awareness, really.

And you know what? I’m so incredibly lucky to finally feel that awareness. I’d never trade that. I’m insanely grateful for it.