Our Autism is fluid. It’s changed a bit over the years. I imagine it’ll keep changing. This is what our Autism is like at nine and a half years old.
-It’s still watching Sesame Street.
-It’s buying or making everything associated with a new interest in hopes of connecting and reaching her.
-It’s tracking and recording her poop and giving in when she begs for an enema to bring her relief.
-It’s slipping away from some of the inclusion programs we once participated in. The typical kids just aren’t as inclusive as they used to be, and I’m honest enough to see that it’s just me trying to fit my square peg into round holes. Little Bird could care less who she’s friends with. I think she just wants friends.
-It’s having to change the sheets more often than I’d like to and then having to answer, “mommy, are you disappointment?”
-It’s trying to ignore the posts and pictures of peers’ vacations, dance recitals, soccer games, summer camp drop off/pickups.
-Our Autism is hours at the library or bookstores (if we can find them). Skimming and stimming through books on books on books.
-It’s talking about what we’re going to do today, what we ate today, where we’re going. Again. And again. And again. It’s fostering that curiosity and inquisitiveness.
-It’s repeating to others everything she’s said so that they might understand her.
-It’s fighting for services in school. Even 10 more minutes of speech per week.
-It’s giving myself extra time in the morning because she still needs me to dress her, brush her teeth and hair… and yet still running late.
-It’s bracing for the ache when the baby passes her developmentally.
-It’s loving to see how happy she gets to hear me cheer her on. Her biggest reinforcer is to know she’s making me proud.
-It’s hearing her sweet voice talk about who sat around our Passover seder table last year, again and again.
-It’s letting go of the 25 hour per week therapy schedule and settling into minimal therapies and just being a kid.
-Our Autism is still seeking out new doctors to find ways to help her feel better.
-It’s brainstorming better ways to answer an inquisitive child’s “why is she like that?”
-Its less awareness, more acceptance.
-It’s unsolicited I love yous that can brighten even the cloudiest days.
-It’s perfect pitch and rhythm. And a lot of dancing.
-It’s never sheltering her; always including her in errands and seemingly mundane activities, knowing that every stop is an opportunity for learning life skills.
-It’s holding hands in the parking lot and snuggling together on the couch. It’s gratitude that she’s not embarrassed to show such affection toward her parents.
-It’s letting go of some hopes and forming new ones, it’s still struggling not to compare my insides to others’ outsides, and it’s going with an ever changing flow. It’s being willing to be flexible, change a plan at the drop of a hat, and be okay with it all. It’s finding friends who understand, have some compassion, and even a dose of empathy.
-It’s spotting other parents who are holding hands with a child a little too old for that, going into the bathroom stalls with kids who look old enough to do it themselves, or pushing a big kid on the swings, and smiling that “I get it” smile, feeling like we’re not alone out here.
-It’s relishing in every moment of affection, every moment we feel connected, and celebrating Every. Single. Win.
This post originally appeared on Birdhouse founder Dani’s blog imjustthatway.com
This post is part of a collaborative effort to share “what does your Autism look like?” To read more or add your own, visit http://fourplusanangel.com/2014/07/this-is-our-autism/