Rules. Rules make life so much easier for us, don't they? Black and white, left and right, dark and light. Rules help us know what to do, and when to do it.Look both ways before you cross the street.
Don't talk to strangers.
Don't call someone on mommy's cell phone without asking.
I before E, except after C.
But what about when rules don't help?That's today's topic for WAGR Wednesday. Rules, routines, and rituals can add predictability and simplicity to our lives, but when you know someone with WAGR, you find out that rules can complicate things as well.
Evie's IQ, for example has tested at around 62...which falls into the delayed range. However, it's quite difficult to diagnose her as delayed because she is able to memorize things so well...patterns, systems, routines. It's when those rules and patterns need interpretation that you actually see the delay. The gray areas are the areas that scare me the most because they reveal the naivety, the vulnerability of my child.
Look both ways before you cross the street. Left, right...cross. EXCEPT for when there's a car! It's not the looking left and right that safeguards you...you have to EVALUATE the situation and realize that, if there is a car coming, you cannot cross. That's the part where Evie falls short. That's the part that makes 'the rule' so complicated for Evie.
Don't talk to strangers. But what if she needs help? What if she gets lost and needs to talk to an adult about where she is and how she can get to the place she needs to go?
Don't call someone on Mommy's phone without getting permission first. But what if I'm having a medical emergency? What if I can't respond?
I before E, except after C. And except in the word WEIRD. And not in eight, nor weigh, nor reign, nor foreign...oops...either, neither, neighbor. Okay, never mind the rule...
One glaring area that stands out to me where the 'rule' that Evie has learned impacts her relationships with others is a 'rule' she was taught concerning interacting with people. "Hi, what's your name?" She'll ask "what's your name" even when she clearly knows who the person is. Then, the person gets sad because he or she thinks Evie doesn't remember or can't see him or her clearly enough to identify.
Another issue with rules, or routines, is that they may add comfort to our daily lives, but when they are BROKEN, the DISCOMFORT that results is EXTREMELY exacerbated. A good example of this is a TV guide which shows the times and channels of different television programs. Evie will memorize a schedule, but when she sees that the schedule is disrupted or different than normal, she will grow extremely anxious-even when it's not a program she watches.
"Oh no, but Bubble Guppies is on at seven, it's supposed to be Dora! I miss Dora. Where is Dora?"
"Well, first of all, you don't watch TV at home because we don't have cable. Secondly, you haven't watched Dora in five months."
"But Dora's supposed to be on at seven...." ...and, here we go.With all of this in mind, you can imagine that our big move from Wisconsin to Nevada; which actually happens in just three days now, is going to produce a lot of anxiety...many, many rules and routines will be changing. What we will do for Evie is what everyone needs to have done for them; we will create new rules, new routines, and be understanding and patient as these take hold and ease us into a new way of life. For over two months, for example, Jeff was living in Nevada and Evie and I were here alone. Each night, after we had gotten home, I would lock the door and say, "We're in for the night." Evie loved that, and so did I. It gave us comfort, security, and peace in our camaraderie and togetherness.
Life isn't easy. As much as we'd like to think there are systems and rules to be followed, there are a lot of gray areas which require interpretation and adjustment. Having a child with WAGR creates a few more twists and turns to these systems, but the longer you're on this "ride," the easier it becomes to anticipate some of the bumps you might hit along the way.
Don't miss out on the thrill of the ride just because there are bumps~just follow the rule that Evie has established for all the wild rides she takes:
Hold on and scream like a girl...