GRAVES: Life’s charades

Published 11:35 am Friday, May 15, 2020

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Having a nonverbal child with a lot to say keeps life interesting.

My son, DJ, has an iPad with a speech app. It only says what we program into it. He has no way to express original thoughts, and DJ always wants to express his little thoughts.

That’s where we get into what we call “DJ charades.” He points and jabbers, and we try to sort it out.

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This may go on for months if we don’t figure it out. He’s a very persistent child.

For about a year, DJ’s brain percolated on something we couldn’t decipher.

Several months in, I figured out what he wanted to say involved the TV show “iCarly.”

The program revolves around three kids who have a YouTube channel. They video themselves doing silly things.

Even after figuring that much out, it still took a while for me to get where DJ was headed.

He picked up my phone, pointed to it and then pointed to the TV. “You want me to video you like they do on iCarly?”

His excitement clued me in.

“You want your own YouTube channel?”

His excitement boiled over.

I thought this was a passing phase, but when I jokingly referred to him as a social media influencer, DJ thought he found a career path.

He has a history of not cooperating when I’m trying to video or take pictures of him. I take about a 100 photos in hopes of one good one. Not anymore.

DJ is all about the videoing.

I never saw this coming. Never expected it.

We tend to focus on what our special children need and the unconscious limits we place on them, especially, during this time of no school and therapy.

We are now parent, teacher and occupational, physical and speech therapist.

We have to make sure all of that gets done on top of our regular routine of feeding, bathing and administering medication. It’s a lot.

Amid the necessities, we forget the fun. We turn into wind-up toys.

We roll out of bed, wind ourselves up tight, vibrate through the day until it’s time to go to bed and start the process all over.

Depending on how any given day unfolds, we may or may not have time to enjoy just being with our child.

We need to cut ourselves some slack.

Yes, the necessities are important, but so is growing up in a loving, joy-filled, life-affirming home.

No one is going to die if we skip school one day or forgo therapy.

Maintaining a rigid schedule benefits no one, and most of all, we need to be aware of how all of this virus response panic impacts the mental health of our children.

As DJ clearly demonstrated, even if they can’t communicate, they take in what is on TV.

Turn off those 5 p.m. news briefings and the news in general. Your child does not need the daily drone of, “Folks, we’re all gonna die,” mentality.

If you’re going to do something every day at the same time, do something to invest in your child.

Read a book together, make a craft, watch a positive movie, do anything except fill your home with negativity.

I promise you, your child is absorbing and dissecting more than you realize.

So, let it be something that nourishes, encourages and strengthens, not something that tears down. A family game of charades at 5 p.m. every day will do just that.

Joan Graves is a mother to five boys and an advocate and activist for children with special needs and their families. For more information, go to www.thejoanzone.com.