Tuesday, September 22, 2015

What not to expect from your child with special needs

Sunday night, I heard Dave and Max cheering and went upstairs to investigate. My boys were lying in bed, watching the Seahawks/Green Bay Packers game. 

"Good pass!" said Dave.

"Ohmmy! Ass!" said Max, pointing to the TV. (P's are not yet in his articulation repertoire.)

The two of them looked so happy and content, I didn't have the heart to tell Max it was bedtime so I let him watch for a bit longer. 

Later, I said to Dave, "Did you ever think you'd be chilling with Max and enjoying a football game?" 

"No," he said, and I knew just what he meant.

The gloomy NICU doctors did a number on our dreams for Max, for sure. Over the years, though, we've realized that having high expectations for Max does us no good. There is only so much we can control, and while we try to give him every recourse, resource and asset possible, and do everything we can to help him, at some point the progress has to come inherently from Max, whether it's cognitive, physical or otherwise.

Progress is not something we can prod, as I learned the hard and heartbreaking way during Max's early years. Max himself has to be good and ready to do something.

In some ways, accepting this has been harder for me than it has been for Dave. Of the two of us, I'm the more demanding person, the one who likes to be in control. Acknowledging that what will be will be hasn't come easy. I am also more likely to endlessly ponder and process. Dave, he's accepted Max for who he is right from the start. I've told the story before of the night, soon after we brought Max home from the hospital, when I could not stop sobbing.

"This is my worst nightmare," I said, referring to the stroke Max had at birth.

"Honey, look at him, does he look like a nightmare?" said Dave. "He's beautiful." 

Not once has Dave ever expressed regret over what Max can and can't do, including not playing sports in the usual way. Yet I know there's regret there. When we were cleaning out the basement a few months ago, we found a baseball bat still in its cellophane wrapping that a friend gave to Max when he was born. I noticed Dave looking at the bat sadly before he put it back on the shelf. 

Not having high expectations doesn't mean the opposite is true: Dave and I want the world for Max. We hope his speech improves and his cognition continues to sharpen. We hope academically he forges ahead by leaps and bounds. We hope he can someday live an independent life. We hope, we hope, we hope. 

Yet I do not harbor expectations, not even itty bitty ones. I hold Max up to Max. He will do what he can do. Accepting what he is capable of and delighting in what happens to come along is the happiest course of all. Nothing ever feels too small to celebrate. Especially the stuff you'd never find in any of the child development books. Like: Child will watch football games with parent.

Soon, Dave and Max may even be headed to a game (Jets!); Max is now saying he'd like to go to one. With headphones, please. And can they be sure to have mac 'n cheese?

But I'm drawing the line if Max wants to start hanging out at sports bars.


  1. This was just the perfect article I needed to read today. And you always make me smile with your insight and humor, while also keeping me focused on making sure My expectations are not more important that was is actually able to happen with the children. Keep up the fabulous job you are doing with your blog ~

  2. Good for you Max! We are playing flag football in gym and it is interesting. (No junior I don't know don't get mad at me because I didn't hear you especially once I said I have a hearing loss.)

  3. Wow. This is profoundly relevant to me and very calming in its own way. Thank you!


Thanks for sharing!

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