Look, spaghetti arms. This is my dance space. This is your dance space. I don’t go into yours, you don’t go into mine. You gotta hold the frame.

communicationLast night I posted about whether to speak up about autism to strangers, and I mentioned that Mario will tell the other kids that he has autism when they question his behaviors. And that got me thinking about all the times he has asked me to speak for him. He will whisper into my ear what he wants to say to another person as if if he’s one of those celebrities who famously lets their assistant talk to all the little people! Although, he doesn’t have the same motivation as the celebrities most of the time.

The week before Christmas, someone we hardly know asked him if he was ready for Christmas, like people do as small talk with little kids, and he whispered in my ear, “I don’t want to go to Daddy’s.” This is unlike me, because I usually try to avoid face-to-face deep conversations with well, anyone, let alone acquaintances (although oddly if I meet you online I will talk to you all day), but for some reason I said to the woman, “He has to spend Christmas at his dad’s this year, and he doesn’t want to.” (Oops, forgot to mention that Pete is Mario’s stepdad. We have a bio-dad in our lives too, and Mario is actually with him as I write this post.) And, to my surprise, she confided in us that her daughter also had to go to her dad’s this Christmas, and that it was the first time. She further explained that she used to get along with her ex, and they would work out visitation more on the basis of what was best for the child, but lately he had been going strictly by the divorce papers, which allowed for too much time away from home on holidays.

And then I shocked myself out of my own customary “keeping people at arm’s length” policy by asking, and it was one of those moments where you hear a voice saying something and then you realize it’s you talking, “Did he remarry recently? Because that’s what happened with Mario’s bio-dad and me; we used to be able to agree on things, but then he got remarried, and now we have to go strictly by the papers.” “Yes, he got remarried, and they just had a baby.” Now she was starting to tear up, and I’m such an awkward ass, so I said, “well, I’ll be thinking about you on Christmas.” And so we went on to less serious matters before she left.

But then something happened that really shocked me more than anything. Mario looked at me and said, “I’m so glad she told us about her daughter, because I always feel like I’m the only one who has to go away to my Daddy.” Now, this is a child who has trouble telling me what he had for lunch most of the time, and his therapist has to make him draw pictures to express his feelings with different colors, but amazingly this time he articulated that relief to me just that clearly. But does he really not know that other people are divorced, and does he not understand that I can’t help the fact that he has to go to his dad? I tried to continue the conversation, but he was more interested in making me play a game on his tablet.

I’m reminded of our first developmental pediatrician, the one who gave us our first diagnosis back when it was “infantile autism,” who used to talk about the window being closed or opened, meaning that sometimes Mario would be more accessible than other times. Well, on this day, the window was wide open for a moment. That’s the frustrating thing about the disorder for us: it varies so much in intensity, and you never know when it is going to close the window on you.


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 )

Google+ photo

You are commenting using your Google+ 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 )

Connecting to %s