My son Lucas had an epic few days this past week. He created positive memories and did some big things that I had long wanted him to do.
On Friday, he took part in the Empire State Games here on Long Island. The events are designed for the physically challenged to showcase their skills and soak in cheers. As a non-verbal boy with autism and pronounced challenges in his life, Lucas getting to take part in a sporting event of any kind is a major moment. The day was a much bigger deal than I had anticipated.
He was there with his class and I can’t help but admit that the entire scene was emotional. Seeing him smile while reaching goals is a huge thing for me as a father. I was so proud of him on such a deep level and relished in seeing him as the star of his day. It’s like watching his sister go to her middle school dance or score a hundred on a test. This was Lucas’s chance to shine and he did. He was awesome.
That night, he had his first-ever sleepover. Lucas’s best friend Christian spent the night at my house and the two of them hung out, played on their iPads, and slept through a good amount of the night.
Christian’s mom, Lauren, was just as proud as I was seeing it all play out. The two of us have had parallel journeys as parents with children so similar. I see her son through her eyes and she sees my little guy through mine. It’s one of the things that makes me relate to her on levels I haven’t with anyone else before. I never discount how lucky I am to have her in my life and the things we can give our boys together.
It was a banner few days for Lucas. He really knocked it out of the park in terms of milestones and memories. My phone was overloaded with pictures, my heart was overflowing with love, and my cup runneth over with pride. By the end of it all, I felt as dizzy as Karen in Goodfellas after meeting Ray Liotta’s friends.
The next day, you know what Lucas and I did?
Yup. Goose egg. Nada. We didn’t even leave the house.
It was one of those days that parents often beat themselves up over. My boy woke up, grabbed a device, and bummed around until he passed out at a ridiculously early time. We had to remember to eat meals. That’s the kind of day it was.
I know that many people reading this will think that feeling guilty over throwaway days with our kids isn’t specific to special needs parenting. After all, we all feel guilty when we don’t make our kids do something of substance on a weekend day. I get that. However, there is a reason why I pinpoint this as something major for special needs parents to remember.
Days like this used to cause me major anxiety when he was young. As the parent of a non-verbal child, there is no immediate diagnosis. They don’t run a test and say, “OK, Mr. Guttman, we see that your boy is never going to speak. Here are some pills. Good luck.”
No. Rather you wait…and wait…and wait. You’re told that anything is possible. As the days and years tick by, you hope for him to pick up some sort of language and every moment he doesn’t, you wonder if you’ve done something wrong or haven’t exposed him to enough of the world. I was convinced that I should be doing something – anything – to “fix” what I felt was wrong.
So, days of nothingness feel like days of failure. You tell yourself that your kid needs to be out in the world. Maybe a day at the park will spark some sort of understanding. Any sort of outside adventure could potentially be the spark that brings language to his mouth. How can I lay around on the couch when my boy is suffering?
Today, I know that’s not the case. Not only doesn’t he need a constant stream of activity to be “fixed”, but there is nothing to be fixed. He’s not suffering. This is who he is. He deserves a day off here and there. He doesn’t need to always be on the go. Sometimes he can stop and smell the roses. He deserves it, whether it’s at the end of a monumental weekend or not.
This weekend was certainly monumental. We got our pictures and we had our fun. After all was said and done, though, we relaxed as a family. When his sister came back from seeing her friends, we watched TV together. We celebrated our victories by recharging our batteries. But even if we had no victories before that day, we deserved to recharge them anyway.
It’s all part of our lives. Doing nothing every once in a while might seem like a waste of time, but if it brings you peace and makes you happy, it’s not really doing nothing, is it?
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