Special Needs Focus:

I have so much to say about my experience as a sister to a brother with special needs, I could write a book about it. In fact, I have, and it will be coming out soon (http://www.dianemorrowkondos.com/). The sibling role is complex and one that is often overlooked as the family, community, and professionals devote most of their energy towards the family member with special needs. Every family is unique, and my experiences are not necessarily the same as anyone else’s, yet I think there are similarities in most families with a child with special needs. Today’s blog is about my transition to assuming more responsibilities for my brother after our parents died.

When my mother knew she was dying, I took over as my brother’s legal guardian and assured her I would do what was best for him. As I said in a previous blog, I was grateful my mother had found a good home for my brother and he was adjusted and happy. Yet I knew my mother had done many things I didn’t know if I was capable of, or quite honestly, if I wanted to do. But as she lay dying, her main concern was for my brother’s future, so I promised her I would always be there for him.

The first few months after her death were tough for all of us. In addition to dealing with my own grief and acting as the executor of her will, I was instantly thrust into being the mom stand-in for my brother. My brother was used to talking to our mom on the phone many, many times a day and coming home for long, extended visits. He was accustomed to her being at his beck and call; she rarely said no to him. It took about a month of endless phone calls to realize I could not fill my mother’s shoes, that I had limits. Unless there was a problem, I asked him to call me only once in the evening when I was home from work. He adapted well to that new rule, needing only occasional gentle reminders. With that success in place, I gradually eased in some other changes. With his home an hour away, I made a monthly instead of weekly visit, and when he came to my house for an overnight, it was for one night instead of three.

I will admit, there were times I cried – a lot – when I drove home after a visit. I didn’t cry for him, he seemed happy. My tears were self-indulgent, self-pitying cries. I didn’t know if I was up to the responsibility of being “his person” and wasn’t certain I wanted that duty. My children had only recently left for college, and I was ready to be free of any caregiving responsibilities. But I had made a promise to my mother, and I would never go back on that vow. I had no option but to persevere.

I had distanced myself from my brother through the years. We had been close when we were kids, but as he grew up, he developed behaviors that scared me. He lashed out at me physically, hurting me several times. It had become easier to maintain only minimal contact. I did need to protect my children, but I was also protecting my own selfish interest. I didn’t really know my brother anymore; my contact had diminished to short visits on the weekends he was home and holidays. It looked like that was going to change if I was going to be not just his legal guardian but also his main person, trying to fill just a bit of the shoes my mom left behind.

There were many visits where I faked it, went through the motions. I saw my brother as a duty, an obligation to fulfill, a task to be checked off the list. As time went on, it hit me that my brother was going to be an integral part of my everyday life for the rest of my life. I needed to change this from a dreaded “have to” on my list and find a way back to the sibling relationship we had once shared. I started by talking with him about our childhood and focusing on some of the fun things we had done, activities I knew he had loved such as riding our horse, bicycling with friends, and swimming. We always came back to our shared love of swimming. My brother has trouble communicating, but these topics brought smiles and laughs as I reminded him of funny things that had happened when we were kids. It was then I seized on the idea of listening to ’60s music. I was surprised at how the oldies tunes elevated his mood and bonded us as we drove around town belting out the words to familiar songs from our youth. We were finding our way back to each other.

Swimming is a love we share!

One day in particular was a turning point for me. I decided to listen, truly listen to my brother, all day long. My version of a “yes” day, we did all his favorite activities: swimming, playing basketball, and watching “Smokey and the Bandit.” When I asked what else he wanted to do, he surprised me by coming up with the idea to cook our traditional family birthday meal (tacos and chocolate cake) together and pretend it was our birthday. We had so much fun cooking and talking about childhood memories together!

Even though my brother has trouble talking, he has ideas, thoughts and feelings he wants to express if only someone (me) will slow down and listen. I had an epiphany that day: He wants what we all want. He wants to be acknowledged, he wants to be heard, he wants to be loved. We’re not so different after all.

I won’t sugarcoat it to make myself look better, there are still times I have to force myself to spend the time putting together a weekly letter to put in the mailbox, stop what I’m doing to talk on the phone with him in the evening, or to take a day to spend with him. I’m human, I’m selfish. My mom has been gone almost ten years now, and as the years go by, my love for my brother has grown and we’ve become close once again. As with most parents of children with special needs, my mother worried about who would love her son after she was gone. I like to think my mom sees us and is smiling.