This is our autism.
Today is
World Autism Awareness Day. The month of April is
Autism Awareness Month. And while I've been convinced for quite some time that Olivia is autistic, this is the first year we're recognizing Autism Awareness Day since
her diagnosis last summer.
Our house emitted a blue glow last night. Olivia, Jacob, and I wore blue yesterday. Brian was decked out in blue, too, in his fire department uniform. :) I shared a link or two about Autism Awareness Day on Facebook. I had a chance to talk to a tech vendor who is involved in a project at work as we looked at my new iPad. As we explored some of the apps I had loaded, I was able to share with him some of the apps we have as communication tools for Olivia.
The grand gesture of setting aside a day or a month to bring the conversation of autism to the table is wonderful. We bathe our lives in blue for a day, hoping that the general population will stop for a moment and think about, read about, ask about our journey with autism. But, this day will come and go. This month will come and go. And when it's over, will anything be different? Will I have affected change in any way?
Will there be more compassion and acceptance (not just tolerance)? Will the world feel the same urgency to solve this mystery as my heart does? Will the world see my daughter as I do, amazing and worthy and a child of God?I pray, yes. Oh, how I pray.
There are so many others on this journey
who have said it so perfectly. I know my words will fail me. But, I believe it is important to try and share a little of what autism looks like in our family...
Olivia is watching Yo Gabba Gabba, over and over again this morning, waving her arms, clapping her hands, purposefully positioned up against the entertainment center so she can kick the cabinet doors. This is her comfort zone. This is our autism.
She pulls on my chin, wanting me to say something. I search her eyes, grasping at anything that might clue me in to what she hopes I'll say. What were we just talking about? Does she want me to sing? She just uttered a sound. What is she trying to say? She tries desperately to communicate, but only sometimes. And when she tries, I don't want to miss the opportunity to engage with her. So, I try to read her mind. Quickly, before she gives up and retreats back into her world without me. This is our autism.
She watches a favorite show. She sings and claps and becomes completely overwhelmed by the joy of it all that she suddenly shifts into a different emotion. It's too much for her. She gets up on her knees, pulls her head back, and slams it onto the floor. Over and over until we get to her to stop her. The knot on her head has formed into bone over the years, but the head-banging can be so rare sometimes that it seems unfair to have her wear her helmet all day. So, we try to anticipate the meltdown. We don't watch Go, Diego, Go, because she loves the start of the theme song, but will suddenly flip out halfway through. Every time. The helmet is never too far away, and I swear sometimes she seems to find comfort in its confinement. This is our autism.
Olivia is functionally nonverbal. She very rarely communicates her needs through words or sounds or signs. Instead, she grabs our hand or arm and pushes it in the direction of something she wants. Or she bangs her head. Or pinches. Or pulls hair. And our minds race to solve the mystery of what she needs or wants. Sometimes we solve the mystery. And sometimes, we end up frustrated and bleeding and begging God to tell us why we are in a place where our daughter cannot communicate with us. But, oh how she loves to sing. She can keep the beat to any song, and she tries to sing the words. It may just be a syllable, or maybe even a different sound altogether, but you can weave the sounds together and realize that she is singing along. Music is her life. She won't sign to communicate her needs, but she's beginning to sign some of her songs. I pray she is one day able to use those signs when the music is off. This is our autism.
I'm pretty sure we own every single infant and toddler toy in existence. She couldn't care less about most of them. Instead, she is happy with a bag filled with flashcards. She pulls one off the bottom of the stack, looks at it, and files it back in the bag on top of the stack. Over and over. Once in a while, she might try to name the object or letter. The play kitchen in her playroom is never touched. The pretend-play toys that fill her baskets are just taking up space, only appealing to her if they play music or have buttons that can be pushed over and over. This is our autism.
Almost every single day, she wets her pants. She will be six years old in May and she isn't toilet-trained. There is no hope in sight of her gaining this skill. She qualified for
Medicaid as "permanently disabled" (that label is a hard one to swallow) and the
CAP-C program, so we receive diapers every month on our doorstep. Ah, that is so nice! I think,
how spoiled we are to have diapers delivered to our door! And then I think,
our five year old daughter is still peeing and pooping in a diaper, and I don't know if that will ever change. Diapers on our doorstep is fair. Yet, our girl can hold her pee and then flood that diaper. We've tried so many different kinds and have yet to find one that can hold it all. So, every day, she wears at least two outfits. Because one will most certainly be soaked sometime during the day. This is our autism.
I know what she means when she utters, "Oh, sah." I know because one day she had her fingers under the movable island in the kitchen as I was moving it and the skin on her finger was sliced. I felt so badly and just kept apologizing, "I'm sorry, I'm sorry." Now, when she is hurt or seems upset about something, she will pull on my chin and say, "oh, sah." Is this like a mom kissing a boo-boo to make it better? Or does she just think those words communicate pain? I don't know. This is our autism.
Who will know what "oh, sah" means when we're gone? What will her life be like as an adult? What will we do when puberty arrives and she starts her period? What happens when she is stronger than me and I can't stop her from hitting her head? Will there be funding to provide the education she needs and deserves? How can I help combat the
ignorance and cold-hearted feelings that some people have of disabled children? Is my faith in God's plan strong enough to withstand the dark valleys? Am I doing all I can to let Olivia's life bring glory to Him? Will this world ever move past
Autism Awareness and instead come together to truly advocate for and help our children? To help our girl? So many questions. So many fears. So much love.
This is our autism.
