“Oh you are not a kid with autism”

Finn spends quite a bit of time drawing in the playroom. I don’t always see what he draws because he crumples it up and throws it away. He didn’t “draw it right” or “one of the babies messed it up.” But on this particular day I noticed what he drew because he drew this:

20140205-205829.jpg

He drew the logo for “FACES 4 Autism,” which is our local autism support group, and he wrote, “Oh you are not a kid with autism.”

When I read “Oh you are not a kid with autism” my heart sank. Does he think he doesn’t have autism? What could he possibly think about autism to also think that he doesn’t have it? Any conversation I have ever had with him about autism was always positive… His autism is what makes him good at math. His autism is what makes him really organized. His autism is why he loves lighthouses so much.

I was baffled and heartbroken, so I asked him what he meant. He said, “I was writing it to Courtney” (his cousin). I said, “You were telling her that she doesn’t have autism?” He said, “Yea. She’s lucky.” I said, “Why baby? Autism makes you so special. Why do you think someone who doesn’t have it is lucky?” He said, “Because we always have to go to walks and parties with your friends at Faces.” (A little background– we did the Polar Bear Run / Walk for Autism in subzero weather last year. I thought the kids were going to be Popsicles when we were done!) I laughed and said, “Honey, those things are things that we do to get out and help other people. They have nothing to do with your autism. We don’t have to do those things if you don’t want to.” He said, “Fine.”

And we left it at that.

Until today.

If you read my post last night, you know that today is Henry and Tallulah’s birthday. Finn and I were talking about the day he and Charlie and the twins were born. I always tell Finn about how he didn’t open his eyes for the first three days of his life. And it’s the truth. He didn’t. I remember asking the pediatrician if he could see and how would we know because he didn’t open his eyes.

Finn joked, “I didn’t open my eyes, huh Mommy?” I said, “Nope, baby, you weren’t ready to see the world yet.” He said, “It was just too bright.” I said, “Yup.” He said, “That’s one of my things: too bright and too loud.” Astonished at his awareness of this, I eloquently said, “Yup.” He said, “I’m just sensitive.” Again, a master of words: “Yup.” He said, “I don’t want to be sensitive and I know it’s because of my autism.”

How does he know that? I’ve never told him anything about that, but more importantly, why is it bugging him so bad lately?

I sat on my bed stunned and searching for an answer that would bide my time. This autism thing is unraveling like a sweater and I don’t know how to stop it.

I know plenty of parents who don’t tell their kids they have autism. I’ve always felt it is a parent’s perogative to tell or not. Joe and I have always felt that telling Finn was the right thing to do for our family. We didn’t want him to grow up feeling different and not knowing why. We didn’t want the word to feel taboo. We didn’t want him to feel like we were keeping a secret from him. We are proud of who he is and we didn’t want him to think that there was any part of him he should feel ashamed of.

But now, here he is at 6 years old feeling ashamed anyway. Here he is in a mainstream classroom, barely requiring any modifications or sensory breaks and he is resenting this label he doesn’t even understand. I have always felt that keeping the autism dialogue open would help Finn in the long run, but is there a chance that I started it too early?

When Finn was first diagnosed, things were really hard. We didn’t know why Finn did the things he did. He seemed to intentionally want to break things or torture his older brother and then got pleasure out of it. Time Out did nothing. He was really aggressive and the twins were newborns; we were worried that he would hurt them. It seemed quite apparent to us that our child was different. He couldn’t stay in a room of more than 5 kids without hitting or biting someone. He walked on his toes. He wore headphones in loud places. He used “Perry the Platypus” as his alter-ego when he was in uncomfortable situations. Telling Finn about his autism seemed like a no-brainer. Perhaps he wouldn’t feel so different if we told him that he was a little bit different, but that we are all different and that’s ok.

But Finn is different in another way and he knows it. He knows that Charlie doesn’t have a team of behavior people who come to our house and discuss the latest goings-on. He knows that Charlie doesn’t need a token board to reward his good behavior. He knows that Henry and Tallulah don’t “earn” Ipad time. And he knows that no one else needs a “steam roll” with an exercise ball to calm down.

Earlier tonight, Tallulah ran crying into the office and said, “Henry pulled my hair.” I did what any lazy Mom would do and yelled into the living room, “Henry! Go in time out!” One minute later, I heard heavier footsteps than I should have and a heavy sigh as Finn resumed his well-worn spot in time out. I said, “Finn, you didn’t do anything wrong. Why are you in time out?” He said, “I heard you say time out and I thought you were talking to me.”

That was not a good feeling.

Finn knows he’s treated differently no matter how hard I try. He gets in trouble more than the other kids and he is praised more than the other kids. There’s nothing I can do about it. It’s not as if I can take all our supports away just because Finn is aware that they are there. We would be set adrift. He would regress, and I surely would lose my mind. I keep reminding myself how far we’ve come since those early days of biting and Perry the Platypus. I keep reminding myself that Finn being aware of his differences is a good thing and that some parents would kill just to have such a self-aware conversation with their child. I keep reminding myself that in the spectrum of our spectrum’s problems, ours aren’t so bad.

I only wish I could convince Finn.

Advertisements

One thought on ““Oh you are not a kid with autism”

  1. oh wow. Our kids sound a lot alike. I know that this is going to come up for us too. And I don’t have the answers.
    What has seemed to help us so far is finding others that have the same challenges so he doesn’t feel alone. When I told my kid I too had sensory issues, it seemed to help us connect in a way that we hadn’t before. So I point out along the way when things are hard for me and I have him “help” me cope. I know this positivism won’t last forever as he gets older.
    It’s hard because my son actually has a lot of friends who are autistic like him and they don’t know. I wish they did. I think how you’ve taught him was amazing and I wish others would talk about autism with their kids the way you did ❤

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s