Being Okay With Just Being

Something I have learned from being Jack’s mother is this: be present in the moment. Just be there and be okay with it.

This is one of those cliched bits of advice that I would probably tune out if someone posted it along with a beautiful photo on Instagram.

But honestly, it took me years and years of struggle to reach a point of understanding with this principle, upon which so much of my happiness now rests.

When Jack was little and neither of us knew how to manage life together, I spent many an afternoon wishing for some (any!) escape from the clamped down restrictiveness of life with a child who screamed and dismantled things everywhere we went, to the point that we no longer went anywhere. By 4:00 pm every day, Jack and I were both in a state of panic. The walls were closing in on us. There was no one who could help. Days lasted eons. I prayed, during these times, for rescue. From anyone. Any source. My prayers were like those of someone in intense pain, praying for relief in any form. “Heavenly Father, send help. Any help. Please help.”

I’d give Jack 3 baths a day, simply to give us both a moment to breathe. He loved being naked and splashing. It was a sensory playland for him, and a few minutes of rest for me. I would sit on the floor in the hall across from the boys’ bathroom and watch Jack play in the tub. In these moments, when I wasn’t actively chasing, intercepting, carrying, or placating an upset and/or destructive Jack, my thoughts floated around the uncomfortable realization that I didn’t know what to do for Jack. All my efforts ended in zero change.

Of course, with time I’ve come to see that no one has the solutions to our Jack conundrum. Experts, professionals, MD’s, PhD’s, SLP’s, OT’s, and BCBA’s have all tried admirably to give helpful recommendations for Jack, which have historically resulted in limited success.

This is because we are outliers.

Jack is the most severely disabled of the spectrum of behaviorally-challenged individuals.

His aggression is the worst his various school principals have ever seen, which is a really fun thing to be told.

Medications have little effect on him.

Ditto for behavior plans.

Well, let me amend that. With complete focus (i.e., one-on-one staffing at all times, with new and exciting/yet not overwhelming activities changing every 5-10 minutes), Jack can have reduced aggressive behaviors and greater compliance with requests.

You guys, while Jack is nonverbal and mentally delayed, he’s not stupid. He knows what he wants. He knows his frustrations. He knows when people are frustrated by him or fear his outbursts.

Now that he lives far away in a group home, the same issues continue. The difference is that he has full-time caregivers and the results of Jack’s behaviors aren’t bouncing back at me nonstop. The fallout of Jack’s aggression and destruction is dispersed among a great number of people, including everybody’s bosses–the special ed director of the school district, the group home director’s superior, the quality control person for the Division of Services for People with Disabilities. All of these higher-ups know about Jack and his struggles. And none of them has the answers.

What does all of this have to do with being in the moment–just being there and accepting it?

It’s basically this: living in a state of turmoil for so long showed me how to stop and feel, to breathe and accept, and to thank God for any measure of relief.

I learned from parenting Jack that a) things don’t have to be the way you want them to be, and b) you can survive. You can survive unpleasantness and sorrow. You can survive repetition and ennui. You can survive screaming and poop and actual violence from your mentally disabled son.

I know this because I HAVE SURVIVED THESE THINGS. All of them. Repeatedly. And after the horrors and the disappointments come the beauty of NOT being in that moment anymore.

I’ve found that now when I’m doing something I’m not totally into, I sometimes pause to think about the okayness of just doing whatever it is–sitting with a restless children’s class at church, cleaning a bathroom, waiting in line, dealing with kids on the spectrum and their accompanying neuroses, whatever. It’s just a thing and it won’t last forever. Life isn’t meant to be a succession of loveliness without any difficulty. Otherwise, we’d still be in the Garden (THAT garden). Even the three month awfulness of watching my dad die was something I could manage because I saw it as a thing I could do by simply accepting it and helping him through it.

I do it when I’m in the lovely moments, too. I’ll look around and think something along the lines of, “I am playing the piano in Relief Society, and while I may royally mess up at any moment, life ain’t too bad,” or “I am doing the laundry and though it’s Sisyphean, it’s also mindless so I can zone out; also I like having baskets of clean clothes,” or “I am sitting by the fire writing in a peaceful house with 3 of my 4 boys hanging out nearby and this is basically paradise.”

Jack taught me how to accept sadness and disappointment, and to relish times of relief.

Oh, Jacky. Everything I know, I know because of you.

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