Autism Matters: Hear Me

*Disclaimer: This is an emotional post for me and many whose path it may cross. My intention is that it is authentic; let’s be real in our discourse, yet sensitive. Secondly, I am not writing and linking to the post from Today to invite a discussion or debate about genetics versus environmental causal debate.*WAAD

 

 
I love many individuals with autism and each person has helped me grow, find joy, and love without boundaries. The why or even the what doesn’t matter. People are special and have value for who they are. #lovewhatmatters

This particular day was rough. It seems as though I’ve been losing control of everything—being challenged to relinquish control of plans and ideas and perceptions and paradigm. I am overwhelmed at work; it’s the busy season of last minute meetings, teaching the final parts of your curriculum, testing prep, enrollment for classes for next school year, etc.

But this week was rough all over like one of those nubby, rubber bouncing balls that really doesn’t go with any sport, it’s  just a novelty.

So today…today I was reminded why I write.

My daughter has special needs. I could list all the diagnoses; they’re not her identity. But today I was overwhelmed everywhere, feeling like a boat taking on water. She needs me. She needs me. She needs me to make visuals, to be her voice when she cannot find her’s or when her behaviors are her voice (the normal and the quirky).

When I arrived to pick her up, I misunderstood her abnormal behavior that usually communicated she wasn’t ready to leave Grandma’s and Grandpa’s. I was in full on mom’s-gonna-need-a-cry time. We made it home and I hid in the bathroom (if you’re a mom, you understand.) And then this Today article written by Carrie Carriello was in my FB newsfeed. And what I’d been praying for—a friend who understands-really understand—was answered. Here is a mam

aLLYSON SOCCERa who could relate, sympathize, not just empathize, with my life and my inner thoughts.

“I am a much different mother than I expected to be,” she writes.

I cried. I was hit with the emotions of what it means when someone writes what you feel, what you know, but think no one else sees. Someone else deals with the tens of thousands of questions a day about the same thing. Someone else has the temptation to ask, “why”. Ours is not the story of genes and whose side it came from, but our why is: “After the heartache of infertility from painful endometriosis and the year-and-a-half fight to adopt our daughter, why autism, anxiety, ADHD, and sensory processing problems?”

When we write, when we are real it helps others. It was good today to have someone else tell me she does the same things with her child. She has the same thoughts as a mama struggling to do her best and demonstrate patience when answering the same questions day in and day out. Even though there’s routine, even though there are schedules written down and visuals for her routines, sometimes it’s not enough. And then there was this that opened the faucet of tears, again:

“Underneath it all — the tantrums about a missing pillow and the small orange vial with the little white pills and hundreds of questions about the schedule, I know he’s trying to tell me something else entirely.  Make room for me. I am here.” (Carrie Carriello, I Know Why He Has Autism)

I know my daughter’s telling me something when she can only speak with one word, when she throws her body into me or the seat of the car—See me.

 

 

 

My Blue Light Bulb

I’m gonna be honest. Okay, I usually am, but maybe the better word is transparent. Autism is messy. Autism is different every day, and many times it is different every minute of every day. Today after church, our youngest daughter couldn’t hold it together any longer. Whatever it was that she was feeling, whatever it was that sent her over the edge (ie the last straw), I’m not sure, and it doesn’t really matter. She’s processed, coped and moved on. Our community of faith got to see what a meltdown looks like for our 10-year-old daughter who happens to have autism, ADHD, and generalized anxiety disorder. The meltdowns are few compared to the number many parents of children on the spectrum face. But the irony was not lost on myself or my husband as today is Worldwide Autism Awareness Day. 

We typically settle into a quiet, creative afternoon on Sundays. We rest. We reconnect with each other after going to school, work, and doing chores the rest of the week. I’m sure, like many of you, I settled in to browse the many social media outlets programmed on my phone. I light it up blue (Autism Speaks awareness campaign). I don my puzzle pieces at home and at work. Our family is fully aware of the many controversies and debates surrounding autism, “treatments”,  its support groups, and the different causes.light it up blue 2017

But, I don’t really think twice about lighting it up blue, so some of the things in my social media feeds coming across today were shocking. I appreciate another’s perspective on things, but do we really need more causes/opinions to offend us and divide us, though?  Aren’t we missing the bigger picture? 

Our family has lived hidden in many ways. We have protected our daughters from the judgement, the eyes, and the need to conform to certain societal institutions. It’s affected our marriage. We’ve never had a consistent date night. A date night for us is maybe grabbing five or ten minutes early in the morning while the coffee pot percolates or hanging out by the washer and dryer as we do laundry. Finding a sitter is hard. Trusting the sitter is even harder. So for twelve years, we’ve lived hidden. We’ve lived shortened. You arrive on time to events, but leave early. When your daughter is 10, you’re still carrying a “diaper bag” with a weighted blanket, fidgets, snacks, essential oils, and lotions. And don’t forget your alternative method of communication, because even if your child speaks, there are always moments when they need another way to communicate. 

Yes I’ll wear blue (for autism and my KC Royals), because I support the autism community and want you to ask questions. Yes, I changed my light bulbs outside to blue and hope it ignites an open dialogue with my neighbors about the realities of autism, being a parent, and a special education teacher. 

So why #lightitupblue and have an #autismawareness day?

“…no matter how your molecules are knit together in the spectrum of quiet to loud, bold to subversive, and so on, you’re commissioned and permissioned to arrive at life as your own weird and wonderful self,” Erika Morrison, Bandersnatch.

Because it’s about 3 things. 

  1. Be aware. Not just for autism, but for the differences we all possess. 
  2. Educate yourself. After awareness, we can start to educate ourselves and our community
  3. Accept. We all want to be accepted by someone. Eventually, I hope, we accept each other for our differences and similarities, then we will be able to create a community of support and love. 

Because at the end of it all, I want to be known as someone who loved well. 

My youngest blue light. clone tag: 5922361547406362737