My parents and brother are coming to visit me and my husband here in Alabama next week, and we can’t wait to welcome them. I’ve been counting down the days on my calendar, and I know that Willie has been, too. (In fact, whenever I look at my calendar, I can practically hear him saying, “In one more week, we go to visit Caroline and Jonathan in Alabama!”) Ostensibly, they’re coming to celebrate my mother’s birthday and visit our new home for the first time. However, they are also arriving at the start of Autism Awareness Month. And the fact that their visit falls right between World Autism Awareness Day (April 2) and National Siblings Day (April 10) … well, the timing is ideal, if you ask me. It’s been too long since we’ve seen one another, and I’ve felt the separation more acutely since I began serving as a volunteer member of the Sibling Leadership Network’s communications committee. The writing and preparation I’ve done for them has me missing my brother, and I can’t wait to spend time with him.
Of course, the usual questions run through my thoughts: Will Willie be able to adapt to the travel, the change in routine? Will he have another meltdown on the flight? Will he struggle with being in a new place, or will he be able to enjoy it? But what I’ve learned in being Willie’s sister and in serving as a caregiver for adults with intellectual and developmental disabilities is this: One of the best gifts I can give another person is a firm faith in their capabilities. It is all too easy for caregivers and family members to get stuck in a mindset that says, “We can’t do that outing/trip/celebration. He/she will never be able to handle it.” On some days, that may well be true, but if we are to support and equip our loved ones on the spectrum, we need to constantly check in and reassess such statements. What was the case yesterday may not be the case today.
As an older sister, I do feel protective of Willie, but I can’t let that get in the way of him having the dignity of risk. And even as I acknowledge the areas where he needs support now, I’m determined not to set limits on what he is able to do for himself. After all, if he’s never put in a position that challenges him, how will he learn and grow? Self-control is a muscle he’s building; he still has difficulty managing his behavior at times, but he is learning.
And as the visit approaches, it helps to know that Willie has participated in planning the itinerary. Our parents asked him about his travel preferences, saying, “Do you want to have a shorter flight and a longer drive, or a longer flight and a shorter drive?” He apparently responded right away, with a decisive tone with “A shorter flight!” So that’s the plan. In turn, I’ve been doing some preparation of my own, mainly in the form of letting go of expectations. I remind myself that the visit doesn’t have to go “perfectly,” that Willie’s behavior will probably get difficult at least once, and that it will be all right even so.
It’s wonderful to feel the anticipation, to know that I’m looking forward to seeing my brother. This may sound simplistic, but it’s a hard-won truth. There was a time when I looked at Willie and felt only fear. There was a time when I felt that I had to get away from him, from the havoc wrought by his aggressive and self-injurious behavior. But now, all I want is to welcome him here, to the old house that is our new home. And I think that’s the reason why I’ve had these particular song lyrics (from Phillip Phillips’ song, “Home”) running through my mind this week:
Settle down, it'll all be clear/ Don't pay no mind to the demons/ They fill you with fear
The trouble it might drag you down/ If you get lost, you can always be found
Just know you're not alone/ Cause I'm gonna make this place your home.