Recently, I got a text message from my daughter, who was away at college. She told me that she was listening to a panel of young adults with Asperger’s syndrome discuss their relationships with their families. She heard them express some resentment towards their typically developing siblings. In her text, my daughter wondered what her fifteen-year-old brother with autism thought about her. Did he even miss her in her absence?
When I read her text, I felt both moved and surprised. My daughter is far away from home, immersed in college life, and experiencing a new level of independence. And yet, even from a distance, her connection to her brother exerts its own gravitational pull. Even more astonishing to me was my daughter’s concern that her brother might feel angry at her, or even reject her.
My daughter was about five when my son with diagnosed with autism. I have watched her over the years as she has tried to make sense of her brother’s quirks and differences. And it strikes me that there are so many things that I will never really know for sure. What is it even like to have a sibling with special needs? How does my daughter feel when she compares her relationship with Noah to her friends and their typically developing siblings? How do my son’s needs, and the outsized attention we often pay to him, affect her?
The trouble is, I can be so preoccupied with the daily demands of home and work that I forget about all of this. And then, something happens, like a text message, and I am reminded that my daughter continues to grapple with questions about her brother and their relationship.
How can we, as parents, support our other children…the siblings of our child with special needs? We need to make the effort to understand, and yet make peace with the idea that we can never really understand.
We need to Mind the Gap.
If you have ever been to London and traveled on the Tube, the British subway, you will be familiar with this phrase. It is a pre-recorded message of warning as one leaves the train, a reminder that there is a little bit of space between the train door and the platform, and if you are not careful, you might trip.
It is also a wonderful way to think about the people that we care about.
The verb, “mind,” is not used so often in this country, except in expressions like “mind your own business,” or “mind your manners.” But the word connects to the larger idea of mindfulness, of trying to hold something in its fullness without necessarily trying to control it or change it.
I first learned this new way to think about “mind the gap” from Rabbi Ira Stone, a brilliant teacher of a Jewish ethical practice called Mussar. Rabbi Stone used the phrase to convey a vital truth in our dealings with loved ones: To some extent, there is always a gap between us that consists of the things we will never know or understand about each other. And this is not a bad thing. In fact, that gap helps us maintain a mindful attention to our loved one’s separate experience.
When we assume that we already know everything about the people we are closest to, we don’t pay enough attention. We believe that we have already been there, done that. We don’t think that we need to make the effort. But when we mind the gap and maintain the awareness of that essential mystery, we keep a sense of curiosity alive. That recognition that there is always something to learn about our loved ones enables us to truly “see” them as individuals with unique perspectives.
Minding the gap, like many powerful ideas, is one that I need to be reminded about frequently. More often than not, when it comes to my daughter, I operate on automatic pilot. I make assumptions about her, and don’t even think about the fact that she has a unique take on things. The truth is, it is a lot easier to forget about the gap, especially when I am exhausted and depleted.
When my daughter was younger, for example, I was engrossed in finding the right therapeutic services for my son. It was as if I was running a whole other business on the side, interviewing therapists, and following up on assessments and recommendations. Finally, when my daughter was about eight years old, I felt at last like I had created some sense of order. I had a whole array of services in place for my son. My daughter was doing well at her school and seemed to be happy.
But then I had a conversation with a friend who has an adult brother with developmental disabilities. She encouraged me to look underneath the surface, and engage my daughter in a conversation about what it was like to have a brother like Noah.
So one afternoon I did just that. And I learned that my daughter was not as happy as I thought she was. In fact, she was feeling forgotten and left out, especially when my son’s therapists came to our home. She asked me, “Why do all these girls come to play with Noah? How come they never play with me?”
I had never bothered to think about what my son’s therapy team seemed like from my daughter’s perspective. Here was a group of young women who spent a lot of time at our house, all to be with my son. From behind the playroom door, you could hear them engaging him, giving him encouragement and laughing with him. And there was my daughter, listening to their play, but not invited to join in.
It was an incredible lesson for me that my daughter’s experience could be so different from what I imagined it to be. I had been feeling pretty good in my success at finding services for my son. I made the assumption that everyone was feeling o.k. too. My daughter’s admission that she felt overlooked came as a big surprise to me. It was a wake-up call about the gap.
I have had many such wake-up calls since then.
Minding the gap when it comes to my daughter means being open and curious to learn what she is experiencing. There are times when hearing her truth is difficult, especially when I learn about mistakes I have made. But I try to comfort myself that making mistakes happens. Being able to talk about them afterward, and learning something from them, is almost more important than not making them in the first place.
As parents, we really don’t have all the answers. But, even better, when we unleash our curiosity, we have questions for our children. We can remember to mind the gap, and ask: “What is this like for you?” And in this way, we can open up an important space: a space for our children to think about their experience, and a space for our own understanding to grow.