Someone, somewhere, right now, is happy, you know? Wouldn’t it be great if we all felt happy when someone else felt happy? Yes, impossible, I know, because for every happy soul, someone else is sad. And if we didn’t know sad – how could we learn to appreciate happy, right?
Autism is a funny creature like that. Because it is a spectrum, when one person is in the dreary gray zone, someone else might be in the brightest of yellows, having just surmounted some huge obstacle. Just as one person feels good about reaching the summit, others may find themselves tumbling down a hill of regression. And so it goes.
Knowing that there is an ever fluctuating wave of emotion surrounding this disability sometimes freezes me in my tracks. I wonder how often I will be judged or compared, hated or pitied for what I write. A debate goes on inside me about self-censorship that can, and sometimes, does cast a veil over what I say. Will I offend this person or that? Will Toots’ tumbles, or his surmounting of obstacles, place him on a chart where someone is keeping score?
When Toots was younger, life was scary difficult. He was so nonverbal, and this frustrated him to no end making the meltdowns terrifying, long, emotionally exhausting and always “unknown”. We did not know the triggers, the ways to help stop them, or how long they would last. We did not know whether he was physically ill or hurt. Often, we contemplated going to the emergency room.
Life is not like that any more. Toots uses language for communication of his basic needs. He cannot express past events well yet. Everything is still yesterday or tomorrow. “Yesterday, you were in kindergarten” or “Tomorrow, we will go to Hawaii (I wish – really a few months away).” Even here though, he’s beginning to surmount the obstacle of time.
We now know most meltdown triggers and how to soothe him to stop the pain.
In other words, we’ve had a lot of progress.
Toots has a toy computer from Fisher Price. He calls it his “mousey” computer because the “mouse” is a “mouse”. It also has two “mouse” related games. One is like Pong. The other is a maze for the mouse to get the cheese. As you get through each maze, the next becomes more complex.
Between ages 2 and 5, Toots demanded that I play these games for him or set them up so he only had to move a step or two to win. Now, he does the mazes from beginning to end faster than I could hope to do them. He knows how to get there.
This game mimics his life.
He knows how to navigate himself out of things that used to scare, upset or frustrate him. He knows there will be dead ends. He knows to turn around and find another way. Ways, that other kids never have to look for, have become well-worn paths for my child.
In days gone by, I used to cringe overhearing conversations of neurotypical kids with their parents, in Target, at the book store or mall. This week, I volunteered, for the first time, at school. I feared that cringing would make an appearance again. Instead, I discovered that my son is really not that different. He’s not raising his hand or shouting out answers. He still looks the other way. But I know, he knows the answers. He still does not say it out loud to his peers – just to me and his tutors at home. He knows more than some of the kids, and less than others.
And here I sit, in my “peer group” of readers, sometimes hesitant to share too. There will always be someone who doesn’t want to hear or listen. Someone who can bite at my feelings. But, in the end, I still choose to share joy, pain, love, fear and learning here as a step toward awareness – my own and others.
Is it worth it to write – to share? With every post, I learn things about myself and my son. I look for ways to make life better, easier, to help teach, and to grow. And in writing, I think more deeply than I otherwise would. I assure myself my position makes sense. Sometimes, others who comment, will raise points I’d never thought of, giving me the gift of knowledge. And I learn, benefitting both me and my child.
Maybe a social story for my son about the benefits of sharing what he knows with his peers could help him see the value of exchanging ideas…
Today, I am happy. And this is what I share. Our kids will find a way to get their messages across. It may be a voice that does not come from vocal cords. It may be through pictures, typing, an iPad, sign language, drawings, or nonverbal body language.
For us, my son’s voice has finally grown to convey more meaning than mantra. While he still engages in excessive echolalia, now it is always intermixed with communication which has increased a hundred fold. He has blazed his own trail out of his maze.
Now that he is six, those early years seems a distant, rocky memory.
There is a new lesson about life inside each of us every day, waiting to be shared. Today’s lesson? Growth comes with time. At least it has for us.