Turn Around, But Be Careful (#433)

I start teaching on Wednesday and have a full day of meetings and other business (i.e., things I have not been able to get to because it has been summer with Charlie) on Tuesday. My parents came in from California tonight to stay with Charlie, who does not start school until Thursday of next week. For grandparents who live 3000 miles away, my parents travel out to the East Coast to see Charlie quite a bit and they are the only people who can watch him long-term.
Nonetheless, my parents always ask the same question over the phone and when they first see me:

“Anything in particular we should know for taking care of Charlie?”

After seven years of grandparenting an autistic grandson (who is also their only grandchild), my parents have most things down: Charlie’s special diet. What to do if he has a tantrum and (perhaps more importantly) what not to do. When to give Charlie his medication. How to decode Charlie’s less-articulate phrasings (my mom has been known to call me in the middle of a class to ask “what do you think this means?”). How to go shopping, to the mall, and to some other places. My parents always see changes in Charlie, and so always ask that question: “What should we do?”

I went over the usual list with my parents and then—while I was sitting with Charlie looking at photos on Jim’s laptop—a thought came to me after a picture of a certain street flashed by.
“Make sure,” I said to my parents, “that once you’re going in one direction, you don’t turn back.” And I reminded them of how, on their last visit, they had taken Charlie for a walk and thought—since it was muddy after it had rained—that he ought to turn back and wear a different pair of shoes. Charlie did as requested, only—once they had resumed their walk—to fall down flat on his back; I heard him screaming and ran to get him home. All summer long, I have been aware of this need in Charlie that, once we are in motion to go some place, turning back can make Charlie tense and nervous and in potential tantrum-mode.

Because he thinks that we are not going where he thought we were after all? Because the cognitive gear-shifting overwhelms him, and he panics? Because once Charlie’s internal vector is set, stopping it (even briefly) is the equivalent of slamming down a brick wall in his path?

“I remember that,” said my dad. “Glad you brought that up.”

Jim and I have been trying the turn-around challenge on Charlie, in small doses (as yesterday when I forgot my coffee cup as were driving off to the Bronx and Jim turned the black car around; Charlie sat peacefully). But we all acknowledge that, much as Charlie loves my parents, spending several full days with them still merits some thoughtful planning; my parents know there are some things that cannot do (such as swimming and bike-riding) and Charlie has to accommodate himself to them.

In past years, Charlie has been stricken with intense anxiety at the prospect of my parents’ visits (similar to his worries about vacation at the ocean). Last year, he equated my parents’ arrival with the end of his time at the beach and spent the last few days screeching “aw done Gong Gong Po Po” for long periods (and then had his usual fine time with my parents). Jim and I have been careful to talk succinctly but frequently about my parents’ impending visit; Charlie yelled a few times, but listened with big serious eyes.

Their plane was not due until this evening and—with regular reminders of my parents’ impending arrival—Charlie had a day of peace and cheer: An early morning ABA session with a new therapist-in-training; a drive to Jersey City where he waited in lines for parking decals and at the bookstore, sat munching some chips in the department office, played around in my office as I sorted papers and prepared my syllabi. We went for what will probably be our last swim in the pool, which was almost empty (Charlie swam his way all around). We went shopping to replenish our very empty refrigerator and Charlie asked, and smiled to see, those photos of beach vacations through the years.

I’m hoping we can keep Charlie going—Charlie can keep himself going—in this good direction, with no need to turn around.

6 Responses to “Turn Around, But Be Careful (#433)”
  1. tara says:

    Charlie is blessed to have such involved grandparents. If anyone can keep Charlie going in the right direction, it is you Kristina! Good luck with your teaching this year.

  2. Patrick has ‘turning back’ issues as well. What wonderful grandparents Charlie has to love him so much and want to take such good care of him.

  3. Called my mom to check in this morning and they were too busy shopping at the grocery store to talk….

  4. Meg says:

    I love hearing about Charlie and all his vacation exploits. It is amazing to me that tho ASD kids are all so different, I identify often with the things that are the same. Finally Fin is back in school, and back on track for the moment, we just wait for the next ripple in the momentarily calm waters.

  5. KC's Mommy says:

    Oh my gosh K.C. is the same way! God forbid we change directions or should I forget something in the house and have to go back in to get it! Talk about a meltdown! Now if I forget something I just leave it cause the meltdown is so bad. Even when we drive and go down the wrong street (he knows boy oh boy does he know) he’ll kick the back of my seat and scream non stop.
    Kristina I could never figure it out before but your post says it best, “Because the cognitive gear-shifting overwhelms him, and he panics? Because once Charlie’s internal vector is set, stopping it (even briefly) is the equivalent of slamming down a brick wall in his path?”
    It makes total sense!
    You are a terific Mommy and your Parents are awesome! You are so in tune to your Charlie Boy:)
    I learn something everytime I visit Autismland. Thank you for sharing your blog with all of us, it has been a lifesaver for us. I am understanding K.C. much better:)

  6. Charlie is the same about always knowing what street we are on—I do try to vary our routes, but only when I’m ready. As you note, Meg, many things with our kids are often the same despite their unique differences……. KC’s Mom, thanks for sharing too all about your little guys!

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