Originally written for and posted on The Arc’s blog for National Siblings Day.
My family moved a handful of times when I was growing up. Every time we did, my parents would obsess over the trees. They’d discuss which kind of tree would be best-suited for where they wanted to plant, and, most importantly, the longevity of the tree. They were usually young trees. ‘They’ll grow,’ they said. Even if we probably wouldn’t live there to see them mature, it was important to my mom and dad to leave deep, strong roots in the ground.
My younger sister Caroline was born with a neuro-genetic disorder called Angelman Syndrome. She’s nonverbal, but astoundingly effective at communicating with an assistive communication device, modified sign language, and, well, pointing. Before I went to college, being one of the roots in Caroline’s tree was just a normal part of my life. Although my parents encouraged me to go off to college where I wanted to—yes, even if that meant leaving Texas – I felt guilty and a bit selfish (‘I really only have to worry about myself now?’). I sought out work with organizations that served people with disabilities like Caroline’s. Now, I work for a national disability organization, but I’m still not home to help take care of my sister.
My parents always reassured me that they would take care of Caroline. They would make sure the necessary financial structure was in place, that, should anything happen to them, everything was prepared. ‘Take the pressure off yourself,’ they told me. How can I take the pressure off when I work down the hall from The Arc’s policy team? When I hear every day about the very real threats to supports and services for people like Caroline?
In June, Caroline will turn 19. I am 22. We’re entering a new part of our lives. A part where I simply can’t assume everything will be taken care of anymore. Here comes the part where I have to know about SSI, and I need to know things like the fact that if an SSI/Medicaid beneficiary has more than two thousand dollars in their name (whether via a thoughtful gift, or as a beneficiary in a will, savings, etc.) they can be disqualified from their benefits, and…and…and…
I went home two weekends ago to participate in our first-ever Person-Centered Planning meeting. I had never heard of Person-Centered Planning before, but my mother had found a facilitator and was convinced it needed to happen. It needs to be a celebration though, she said. This isn’t just a meeting. We want to make it a party. She fussed about buying favors for the guests, and festive cocktail napkins for the snacks. There was Tex-Mex.
And one by one, various people who are, or have been at some point, roots in Caroline’s life rang our doorbell. Her behavioral therapist, her cheerleading coach, a former school aide and frequent sitter, family members… Fourteen in all.
We introduced ourselves and milled about, strangers drawn around this one vibrant, 18-year-old focal point, and when called to order we drifted into the living room. Caroline waited in the living room the entire time, seated comfortably on a dining room chair placed front-and-center, legs crossed, hands clasped eagerly. We had worried that the situation might be over stimulating for her, that we might see some acting out. Not so. Yet again I underestimated her. She sat on her throne, grinning like the cat that ate the canary, soaking up every minute.
The concept of Person-Centered Planning is that by brainstorming with all of these different people, who all play different parts in Caroline’s life, we will together be able to form a more complete picture of who she is, and how to support her. We already know she tries to get away with things at home that she doesn’t at school and vice versa. (The girl does know how to work people with her smile). So the people who know her at school know a different side of her. (Any high school kid who acts the same way at home as they do at school, please stand up. No one? Moving on.)
For an hour and a half, we considered very deeply what makes Caroline who she is. What does she like and dislike? Who is important in her life? What are her strengths and skills? If someone didn’t know her, what would we think they needed to know in order to ensure continuity and satisfaction in her life? The planning conversation is not one that comes up lightly. My parents know they won’t be able to care for her forever. They’re teaching me that skill they learned long ago—how important it is to start early, to lay down deep, secure roots. I don’t like to think that things will ever change. I don’t like to think that they won’t be around, and I don’t like to think of Caroline living anywhere but with family. I’ve argued with them tearfully that it doesn’t matter where I am in my life or what I’m doing– when the time comes I’ll be her caregiver, I’ll always have enough to provide for her, I’ll do this, I’ll be that. But hoping for the best is not a plan. Even planning well doesn’t guarantee anything. In a world without guarantees it is crucial to plan so that Caroline can continue to blossom, and, to the best of her ability, always be included in decisions about her life.
There is no perfect time to plan. There’s no good time to confront your own mortality, or the other hard truths that necessitate future planning. As siblings, that relationship is often the longest we experience. We are an important and vital part of our siblings’ lives. We deserve to be a part of the process, and it’s vital that we start the hard conversations with our families, if they aren’t already happening.