Special Needs: The Day I Listened to My Brother

My brother is intellectually disabled and has a great deal of trouble with communication. His lack of language development was one of the issues that caused my mother concerns when he was a toddler, but the doctor continued to assure her that boys developed their vocabulary slower and he was fine. By the time he was three there were enough other delays that the doctor reluctantly and sadly gave my mom the diagnosis she suspected all along. In the 1960s it was called Mental Retardation, today we call it an Intellectual Disability.

My brother at two, before the diagnosis that would change our lives.

My older sister and I took it as our mission to teach our little brother how to talk. We knew nothing about speech development, but we did know our brother was food-motivated, so we used M&Ms to bribe him to say simple words. My childhood memories are saturated with mental images of listening to my brother try to talk; at times he would become frustrated as he tried to express his thoughts and lash out physically when we didn’t understand. He was my brother and I loved him, so I would try my best to decipher his speech and hand motions, sometimes sitting for what seemed like hours.

After I left for college and discovered another world, one in which I had total freedom and no sibling responsibilities, I found it much harder to invest the time with him when I came home to visit. My patience had disappeared and become replaced with a delayed adolescent self-centeredness.

When I look at this picture of my brother and me from my college graduation I feel a bit sad. We were still close but I had become less patient and more self-centered.

Now that I’m 60 and my brother is 55, our relationship is shifting once again. Since our parents died 8 years ago I have become his legal guardian. He lives in a home where he is cared for around the clock, has a job in the sheltered workshop, a roommate, friends and activities. He seems content. We talk on the phone nearly every night, and I visit frequently.

When he comes to my house for an overnight visit I mentally prepare myself to let go and focus on him, which I openly admit is not always easy for me. His last visit was a perfect example of the power of listening. When I picked him up to come to my house for a few days I decided to try to get him to talk to me and to use all my powers to listen and understand him like I did when we were kids. Because so many people can’t understand him, he has quit trying as hard and limits his vocabulary to easily understandable words.

What did I find out during the two days we were together? I found out he really misses our childhood home and our parents, I found out his favorite part of growing up was riding horses and swimming. I discovered he has a very tender spot for small dogs as well as cats. The more I listened, the more he opened up and talked. It was slow and I had to ask him to repeat himself often, but I think, or at least I hope, he sensed I honestly wanted to hear him and know what he thinks. I hope he felt loved and valued.

Of course, I’ve known him his whole life, but in the last thirty years I’ve been guilty of rushing him, going through the motions but not taking time to make sure he feels heard and important. I had an epiphany about my brother: I’ve terribly underestimated him. He is so much more than his disability, he is a person worthy of my time and attention, deserving of having his thoughts, needs and opinions expressed. I’ve been guilty of what I find irritating in others, the sin of self-importance, that what I think and say is more vital, spending my time talking rather than listening.

One of our best days in recent years! Was it because we swam or maybe because I took the time to stop and really listen?

My brother is different. He has an intellectual disability and a severe language impediment, those are the facts. Numbers on an IQ scale may define normal, but they don’t define important or worthy. We’re all valuable people no matter where we are on the spectrum of “normal,” and what we desire is not so far apart. Don’t we all want to be loved and accepted for who we are? Don’t we all want to be heard, to feel as though what we say matters even if it takes a long time to get our thoughts expressed?

My brother and I at Night to Shine, an annual prom for individuals with special needs!

This blog focuses on my brother, but the message applies to everyone we encounter. How many times have you gone to lunch with a friend only to spend much of the time feeling alone because their focus appears to be on their cell phone, texting and taking calls? We all have experienced the acquaintance that gives us a ten-minute monologue on their life, but if we dare to mention ours, their eyes start drifting in a different direction. Put down your phones, turn off the television, spend more time listening and less talking. People want to be heard, people want to be loved and accepted. Everyone struggles in this life to one degree or another, but we’re all more alike than we are different. Practice kindness and acceptance and take the time to listen; you may be amazed at what you learn.