Tonight, all over the world, public buildings and famous landmarks are “lighting it up blue” for autism awareness. It’s a gesture that’s always irked me and that does
nothing little for the autism community. But hey, we get a day.
I’d like to share how we acknowledged this day around our house. Around the time that the seizures began, Sofija started waking up at night. Her nights have grown shorter and shorter over the last several weeks and as of this morning we’ve gone four straight nights without sleep. Pray for us. I’m deliriously tired and my written communication is MUCH more coherent than my verbal at this point. In an attempt for us all to get some rest, we granted our princess’ wish to climb in bed with us around 4am. We have a queen-sized bed, y’all. Baby girl is 5’8″ or so tall. Ummm… yeah. No sleep was happening. Around 6am, after much tossing and turning I felt my back growing damp and warm. That’s what I get for buying cheap generic pull-ups. After cleaning us and the bed all up, sweetness decided to break a lamp and pour water all over the carpet. Then she spent four or five hours attempting to bite and hit herself. In case you aren’t aware, this is autism. A couple of days ago autism looked like a rockstar selfie-taker…
In between seizures, and sleepless nights, and self-injury, that girl is the most charismatic thirteen year old girl around. Today was a very autismish autism day, but every day is not like today. Some days with her are filled with dancing, and laughing, and nail painting, and wonder. That’s the way autism works. People on the autism spectrum can often move around on that spectrum.
That man-child is the King of Cool with the BIGGEST heart on this planet. His doctor challenged him to drop a few pounds this year. He started walking all over our island for several hours a day and watching his carbs. He just weighed in and in three weeks he lost a little over ten pounds. He’s my hero. Today, while his sister was doing her darndest to make the world (or at least our neighbors) aware of all that can be hard about autism, our boy was busting his butt to get ahead on his schoolwork even though he had the day off. He kept headphones on all day and paced around the pool listening to an audiobook when his sister’s meltdowns overwhelmed him. There were hours today where he looked like a typical seventeen year old boy. And there were moments when I saw him stimming and fighting pretend battles (complete with sound effects) all over the backyard. That’s how autism works. People on the autism spectrum usually fall into a specific developmental range, but just like every other person on the planet, they have good days and bad days and peaceful moments and moments when they are overwhelmed. Their good and bad and peace and overwhelmed just might look a little different than yours or mine.
With the number of people in this world on the autism spectrum, I really can’t imagine that there are many people who aren’t “aware”. However, there are far too many people who believe that autism always looks like the characters they see in movies or on television. When I tell people that my children have autism, without fail, they ask, “What are they good at?” That question has often stumped me. But if you really need to know… The boy stimmer is really good at beatboxing and video games. The girl stimmer is really good at kicking our butts.
If you’ve read this far and you really want a little more “awareness“, here ya go:
More than half of people on the autism spectrum have an IQ below 70.
30% of people on the autism spectrum never speak more than a few words in their entire lives.
By conservative estimates, at least 20% of people on the spectrum also have epilepsy.
The average lifespan of someone on the spectrum is 36 years.
90% of childhood deaths in autism are due to drowning.
And then there’s the cost of caring for a child or adult on the spectrum. On top of the thousands of dollars we spend each month for behavioral health, autism has cost us dozens of lamps, five or six televisions, several iPads, a couple of iPhones, two Macbook airs, gallons of spackle, countless drywall patches, an entire tiled wall behind a bathtub, two beds, four mattresses, several shoes thrown out of car windows, the steering column on a Land Rover, all of the A/C vents and radio controls in the same Land Rover, a few chairs, a dresser, dishes galore, etc., etc., etc…
Autism has also cost us more relationships than I care to count. But, after those who just can’t handle our family were sifted away, we were left with pure gold. We have an amazing village of people that are very much aware, who seldom grow compassion-weary, and who love our stimmers both for and despite all that they are. For the gold in our lives reading this, thank you for being our village! For those reading this and living in the autism trenches, find your village, embrace your village, and know that it’s okay for the sediment to sift away. Our kids need us to be their biggest fans and it’s really hard to be a fan if we have to spend all of our time apologizing for them.
I’ve been asked what I would want people to know if they see us in public and have questions about our children’s behavior. If you’re not lucky enough to bump into us out and about and have me scream-answer your questions as I’m sitting on top of a woman-child in the middle of a department store to keep her from ripping my hair out, here’s what you should know:
We’re okay with questions, but we’re not okay with condemnation. If you think we’re weird or we make you uncomfortable, please just walk away and talk to your neighbor about us when you get home. If you see a parent managing a difficult behavior and you desire to help, ASK FIRST! Follow the parent’s lead and instruction and respect their wishes if they ask you not to interfere. We SO appreciate a stranger’s willingness to help, but sometimes help can do more harm than good. We NEED encouragement. Chances are really good that there is some area of your life where you could use a little encouragement too and when you tell the dad holding his squealing son on the bench outside the grocery store that he’s doing a great job you’ve sown a seed of encouragement that you will surely reap. PLEASE have compassion. You’re teaching your kids how to treat our kids by the way you treat every parent or child that is different from you. Teach them well.
Be aware. Or beware. Or whatever.
Happy Good Joyous Rocking World Autism Day 2018!