Too Attached to Routine?

My younger sister, Anne, who has Down Syndrome, often gives me insights into rolling with special needs punches. I am not saying that kids with a history of trauma are intellectually deficient, but it is often the case that trauma (and the resulting survival skills) shuts down the more advanced-thinking areas of the brain during times of stress. It's the old "you don't need to do calculus equations when you're running from man-eating predators" switch in the brain that ensured mankind's survival for all those dodgy prehistoric eons.

One thing that continually puzzles/infuriates me is Anne's inability to understand future events. She simply cannot conceptualize future happenings the same way she understands current or routine happenings. She has a wall calendar that helps, but trying to plan an outing or a trip home with her is a complicated process that extends over many days and many conversations. To cope with this, she prefers a very strict routine. Very strict. And she cannot really comprehend suggestions for potential deviations from that routine.

For example, her birthday falls on Easter Sunday this year, so we are moving the birthday celebration to the following day. We do this often in our family, as we have complicated schedules and several holiday-adjacent birthdays. And always, moving a birthday means more of a celebration rather than less of one (except, unfortunately, in the case of my older sister, whose May birthday almost always coincided with a holiday, a graduation, or an exam period). But Anne is currently in a huff, thinking we are skipping her birthday.

Even more hilariously, however, was her response to my offer earlier today:

Me: "What would you think about getting together for lunch this Friday?"
Anne: "I can't. I go bowling at 1."
Me: "I always bring you back by 1. We'll have plenty of time. Or we could do a picnic so you'll be right on campus and not even a minute late for bowling."
Anne: "I am in Group 1. We are bowling this Friday. It takes my whole day, sorry."
Me: "Okay, what if we did dinner and a movie instead? I can pick you up after you get back from bowling at 3."
Anne (exasperated and faintly condescending): "Carly, Friday night is my laundry night."

Yup, I just got stood up for laundry. I did launch into a short, destined-to-fail argument that she do her laundry at my house while we had dinner and chatted or watched a movie. No dice. And did I mention? She has two laundry nights a week, so it wouldn't really be putting her behind at all to miss one.

Time is, apparently, a complex concept. My nephew went through a long phase in his toddler-hood where every story that ever happened in his entire life happened "yesterday." It takes higher-level reasoning to comprehend time, and particularly to envision, plan for, and rearrange, future time. And while it drives me absolutely nuts when Anne can't deviate from her routine for even a blasted millisecond, I understand that her routine is what keeps her world predictable, manageable, and safe. When her schedule is disrupted, it freaks her out. When she doesn't know when she is supposed to be somewhere, she cannot handle it. I have learned that even saying "we'll go as soon as I've finished ____" is too complicated, and I've been known to just pick an arbitrary time if I don't have one planned already. Instead of saying, "just let me put my shoes on, and then we'll go for a walk," I've learned to say, "In five minutes, we will go for a walk."

Working with "kids from hard places," I have noticed this same inability to think beyond rightthisverysecond. Try saying "we can't go swimming until it is warmer outside," and you will get a kid standing outside asking over and over, "Is it warm enough yet?" And as you can imagine, that gets annoying really quickly.

So what can we do? ROUTINE. Make your life as predictable as possible. Transition between activities with painstaking babysteps. Give directions one at a time. One suggestion I heard and loved was to have the day planned out on flashcards that the kid could hold. And one card would say "wild card!" It would cover anything unexpected, and would have written on it (or in pictures for younger kids) some coping strategies for when something unexpected happens.

Routine can be boring. It can be frustrating that you can't just take your sister out to dinner because that would infringe on her sacred rite of laundry. But it makes her world stable. It reduces her stress. With kiddos, it reduces tantrums and, over time, dismantles the fear response and brings the higher-functioning areas of the brain slowly into play. And that's worth a few commitments to predictability.