The Gift of Presence
Isn't it delightful when your own words come back to guide you? Since this is the final edition of “Leaving Normal” for 2013, I spent some extra time pondering what encouragement I might offer to autism families and fellow siblings. And surprisingly enough, I found the answer I needed in a prior column. This past April, I wrote a column entitled, “Awareness All Year .” In it, I assigned each month an autism awareness task … each month, that is, except for December. This month's “assignment”? “Take a break, rest, and enjoy the holiday season with your sib. Your presence  is the greatest gift you can give.” I've been thinking about what that means, to give the gift of presence. Here are a few ideas I've put into practice and found helpful:
Go “hands free.” Personally, I've found this mantra a potent cure for my addiction to multitasking. The term was popularized by Rachel Macy Stafford of Hands Free Mama ; in her words, the heart of a hands free practice is, “... to let go of daily distraction and place [my] focus on someone or something meaningful.” For example, I change my relationship to technology when I'm visiting my family's home. Often, I choose to silence my phone and leave it in my purse in order to be fully present. I try to enter into my brother Willie's areas of interest; this past Thanksgiving, I sat and watched "The Jungle Book"  with him for half an hour. True, it can be tough to resist the temptation to do something else simultaneously (and I've certainly seen enough Disney movies in my time)! Yet I occasionally watch with Willie because spending time with him is worth it. The same principle holds when we're connecting at a distance. Though the siren song of multitasking often calls out to me, I close my browser and to-do list file so that I won't look elsewhere while we're talking on the phone or on Skype.
In turn, I've noticed that I'm more aware of my screen time when I'm staying with my family. Willie gets agitated if he watches online videos for too long, so our parents monitor his computer use. Since he can't remain on the computer for hours on end, he's gained the ability to transition to a new activity. (Alas, I can't always say the same for myself!) Watching Willie walk away from the computer after a set period has been a helpful reminder to limit my own screen time.
Use your words to connect with those you love. It sounds so simple, but it can be surprisingly difficult to share feelings and experiences with our family members. As fellow AA16 columnist Rose Donovan writes in Using Our Words , “... There's a lot that families like ours don't say to each other. We assume a lot, and often we're just too busy living our lives to check in with each other and share our perspectives and our feelings. We're in it together, yet isolated in the experience.” I can relate; when Willie first started struggling with aggression and self-injurious behavior, I felt the need to “be strong” and put on a brave face. I'd try to hide feelings of sadness and hurt, tucking myself away in a closet when I needed to cry. Now, I'm making an effort to let go of that pretend strength. Being Willie's sister has taught me that being vulnerable and honest takes the most courage.
Remember what's precious. Since Willie struggles with self-injurious behavior, our parents have created scripts to remind him not to hurt himself. If he bangs his head, they'll say, “Willie, is your head worthless?” He'll reply, “No! My head is precious,” and sometimes, that reminder helps him stop. Likewise, if you find yourself overwhelmed by responsibilities during this season, remember: Your head (and your sanity) is precious. If holiday tasks are stressing you out, try simplifying. You might send digital holiday greetings rather than printed ones, or shop online rather than braving the mall. (Better yet, shop online and support autism employment  at the same time!) As 2013 draws to a close, choose to protect what's precious: your head, your heart, your presence.