Note: As I wrote in part one and in part two, I asked Howie if I could share this story here. I told him that I had a blog and that I liked to write about things that happen in our lives on it. His response? “Sure. You can share this with the blogosphere.” Well, okay then. And this time, I asked all three boys if it was okay to share the story.
Chronologically, part three came after part two but before part one. But this is how it all came out here.
Over the past few weeks since the “big” conversation that wasn’t so big, Howie and I have been talking a lot about autism. It’s not hard to bring it up – at the sensory gym we have a community bulletin board with information from our local autism resource center, the Doug Flutie Jr. Foundation for Autism, and Birdhouse for Autism (an app and web based application for tracking therapies, medications, sleep and anything and everything related to a child’s well being). So the word comes up whenever we’re there.
But it had always remained between us.
We’ve also had some discussions about other kids we knew who were autistic. Friends who had given us permission to share that information. Each time, it was met with a smile.
Yet for some reason, I never mentioned the fact that his younger brother was autistic too. Again, this is on me. In my head I still thought there had to be the right time and place to talk about it. That Lewis should know first. Or there had to be some specific chain of events to make it “the right way”.
Apparently, I don’t learn my own lessons.
Two weekends ago, all three kids were sitting at the kitchen table. We were listening to music and the boys were talking about whether or not they had good hearing. Gerry said that our whole family had bad hearing. Before I could step in and protest with my expert hearing skills, Howie said “No, I have super hearing. I can hear and see things that others can’t. I have what’s that word again?”
“Oh yeah. I have au-TIS-m.”
(so yes, the accent is on the wrong syl-LA-ble. But still.)
Gerry looked over at me and didn’t say a word. Neither did I.
“I have autism,” said Lewis matter-of-factly. “I just have clogged ears.”
Howie looked at him and said, “You have autism too? Well, you do have a super memory. You know the whole grid of the Marvel Super Heroes characters on the Playstation game.”
“Yup,” I said. “Lewis has autism just like you, Howie.”
“Does our whole family have autism?” Howie asked.
“No. ” I said.
Gerry looked at me and quietly asked, “Do I have autism?”
I shook my head no.
And that is how Lewis found out that he was autistic too. No big reveal. No grand plan. Just “yup, you’re autistic.”
Gerry got up from the table to get some more milk. I pulled him aside for a moment.
I thought back to a conversation that Gerry and I had almost two years ago to the day:
“Don’t you think he should know about his autism? So he understands? I know most of his friends are from his school and are like him, so that’s really good. But at some point, shouldn’t he know? Because really? Sometimes it’s very stressful for me that I know but he doesn’t.” His eyes teared up a little.
I knew I had to choose my words very carefully here. This…was important.
“Yes, of course he needs to know. Dad and I just have to figure out the right time. He’s only five.”
“Do you have friends who have kids with special needs? Kids who are older? Can’t you ask them when they told their kids?”
And then my kid wows me. Again.
“You know, it’s not fair. All his timeouts. At first I thought they were good. Teaching him. But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up. And you hit something and cause a lot of damage. It’s not your fault that the car didn’t work the way it should. Right?”
I’m in awe of this kid. Of how much he loves his brother. Of how much he gets it.
“Mom. Shouldn’t he know so he understands?”
I touched Gerry’s arm and brought him into the other room.
“You remember you wanted me to tell Howie that he was autistic? Well, I did.”
He looked right at me.
“Thank you,” he said.
Since then, the topic has come up quite a bit. My boys – all three of them – are attempting to understand what autism means to them and for them. There have been attempts at one upping each other with “well, my autism means I can hear the grass grow!” and it makes for a good discussion about how brains work and no, you can’t really hear the grass grow. In quizzing Howie if he washed his hands, he told me that only someone with autism could have good enough smelling to smell how clean his hands are.
Then there was Howie’s question to me one morning at 5am: if everyone in the world had autism, does that mean no one in the world has autism?
For which I had absolutely no answer.
Just this afternoon came “Is autism sensory?”
And of course there was the moment when he told me his gift was part of his soul. When he realized he was born this way.
But my favorite comment came from Gerry last week. We were talking about how all of us in the family have brains that work differently. It’s important to know that and understand why so instead of getting frustrated and struggling with the things that are hard for us, we can acknowledge the challenges and use our strengths to cope with them. We talked about what I wrote in part two:
“At some point I know we’ll have to talk about the challenges that autism brings. Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable. “
I told him that this was why right now we’re focusing on positives that come with autism for Howie.
“I like that,” Gerry said. “I like that he looks it like it’s his superpower.”
Me too. Me too.
“My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir
“There’s nothing wrong with loving who you are
She said, “‘Cause He made you perfect, babe”
“So hold your head up girl and you’ll go far,
Listen to me when I say”
I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga
For a great way to talk about autism with your child (or to learn more yourself), check out this great booklet from The Autism NOW Center and The Autistic Self Advocacy Network at http://autismnow.org/wp-content/uploads/2013/11/Welcome-to-the-Autistic-Community-Adolescent.pdf