Thursday, January 22, 2009

Don't Wanna Be a Sib Today

When it comes to being the sibling of an individual with a developmental disability, I am about as positive as they come. People who have met my brother Peter might understand why. I adore my brother and I appreciate how well he knows me, in his own way, and his unmistakable, unconditional love. I embrace the role that I will assume -- that I am beginning to assume, really -- in helping to ensure that he can be as independent, productive and happy as possible in the future.

However, on some days, I am overwhelmed by the responsibility and resentful of my role as a sibling which I did not entirely choose. These are the days that I wake up and say, "I don't want to be a sib today."

The day after Peter departs from a weekend visit is usually one of those days.

His most recent trip to NY was a blast. As soon as I saw him at the train station, ambling toward me wearing a giant smile, a familiar rush of happiness washed over me. "There's my brother!" I thought. During the weekend we enjoyed a hockey game with friends and family, ate enough junk food to last us both a good while, and spent time with a new friend of Peter's who we are hoping will one day be his housemate. Just seeing the two of them together -- talking about movies and impersonating actors, savoring chocolate cake, laughing at each other's jokes -- was entertainment in itself.

As much fun as we always have together, Peter's visits usually entail a good deal of work and some degree of worry on my part. There are hygiene issues to consider (after a sweltering summer day some years back, when I thought that Peter was going to take out an entire subway car by virtue of his raised arm, we have created a whole shtick regarding deodorant that cracks us both up every time), and reminders about subway safety. There are social cues that he will sometimes miss, and situations in which he would literally talk about baseball for hours, regardless of audience or the conversation they may have been having, were it not for my attempts at tactful intervention. There are stops along our way to buy bottled water or potato chips, and conversations about why it is just not necessary to buy six of each, right now, just because they are on sale. There is the wake of empty water bottles and crumpled napkins throughout the apartment.

I know that compared to many siblings who have brothers and sisters who require way more fundamental, hands-on care, I have it pretty easy. But by the time Peter leaves after a visit, my internal fuel tank is usually empty and I wake up the next day not wanting to have anything to do with being a sib.

So what do I do? I let myself off the hook and give myself a break. I push thoughts of Peter and the unknown future to the back of my mind, and focus on other, preferably lighter things. I read a novel or a vapid entertainment magazine. I go for a run. I shop with friends. I do something that makes me happy, something to put fuel back in the tank and take care of me.

Many of the siblings I've met over the years have had a really hard time with the idea of putting fuel in their own internal tanks. The idea of doing something purely for their own enjoyment seems selfish to them. I can completely relate, because I used to feel the same way. How could I possibly sit around and ENJOY myself when there was so much that I could be doing to help my brother?

Somewhere along the line I realized that if I didn't take some time out to take care of me, I was going to burn out and be unable to do anything for anyone, least of all Peter.

So now on the days that I wake up and that little voice inside says, "Nope, don't wanna be a sib today," I listen to and indulge it, knowing that when I am ready, I will put one foot in front of the other and continue along the path that will hopefully lead to a bright future for both of us.

Thursday, January 8, 2009

Coming Together from Different Places

The new year is off to a very busy start, but I finally managed to add some links that I think will be helpful to sibs. If anyone has recommendations for other useful blogs or Web sites, please do share.

It is amazing that, once you start looking, you find that siblings everywhere are writing, posting, linking and gathering in order to connect with one another and to share information and support. However, I know from working in the disabilities field and from talking with other siblings and people who coordinate sibling groups across the country that there are far too many sibs still out there who desperately need information and support in order to move forward in their lives, and to be better equipped to play a positive role in the lives of their brothers and sisters.

One of the reasons that I think it can be difficult to find, reach out to and connect with siblings is that we are all in different places in terms of our identifications and roles as siblings. Some of us don't want to think of or identify ourselves as sibs, or have this part of our identity overshadow the many other facets of who we are.

For many, the identification as a "sib" is not made until the caregiving role is inflicted upon us by the illness or death of a parent or two, when we suddenly have an urgent need for information and resources in order to step in as caregivers. Too often this is the case. I will never forget a sibling from Rhode Island I met a few years ago, who told the story of when her mother, a widow, passed away. "I didn't even have time to mourn the death of my own mother," she said. "I had to jump on the phone figure out what I was going to do about my sister; where she was going to live and how she could get the support she needs." It broke my heart, and I have heard too many similar stories since then. That is why we so urgently need to connect with each other, government and service providers to make sure that siblings can get the information and resources they need to avoid this kind of crisis.

Other siblings are very involved in the lives of their brothers and sisters with developmental disabilities. They spend time with their siblings -- one brother and sister I know love to play board games together -- talk on the phone, or find other ways to communicate. Some attend planning meetings with service providers, or have strong relationships with the staff at their siblings' group homes or other programs. Sadly, I have also met siblings who are so involved in their siblings' lives that they have forgotten about their own. This doesn't always seem like a choice, I know, but in an ideal world every sibling would have access to the information and services they need to ensure the health and happiness of their siblings AND themselves. A little independence for both siblings can go a long way.

I have chosen to be very involved with my own sibling (people who have met Peter say they can see why - I admit that he got most of the charm in the family) and in the sibling movement. I am aware that I have made this choice because I had the freedom to do so, and that it was truly a choice. Growing up, our parents never expected me to play a caregiving role, which I know is not always the case and which I appreciate to this day. They encouraged me to go out, pursue my interests and live my life. Without this independence, I don't know that I would now so willingly take on the daunting task of helping Peter move to be closer to me, or be writing this blog.

So siblings are in different places and have different needs. The goal is to create a place -- or ideally, many places in states, cities and communities across the country and around the world -- where siblings can access the information, resources and support they need to be great siblings and, most importantly, lead happy and fulfilling lives. You will see from some of the links that I added that this is starting to happen. A hopeful start to the new year!