Listen To Me: How My Down syndrome Brother Saved My Life

My parents had moved to Florida, leaving Bruce and me to be the only family left here in the north. What a blessing it was as Bruce spent every other Sunday with us. The round trip began with me picking him up early Sunday after grocery shopping and taking him back late in the evening after dinner and dessert.

We spent our time working on little projects as agreed upon on his IEP. Some Sundays we rolled coins to encourage his learning to differentiate among quarters, nickels, dimes and pennies. Bruce had to then organize them into piles. Remembering their worth had been a challenge and was frustrating for him. As he would not be shopping on his own any time soon and someone else would deal with the money, causing him stress seemed silly.

So, we focused on the piles and then put them in the rolls to help with dexterity. It was something he could do successfully before I pushed him beyond that comfort zone. He must count how many he has placed into the piles first, which was also a challenge, but one he was willing to take. After many times of forgetting, I had taught him to move them by tens and keep track of them by writing them down so he could go on from there. With practice, he wrote the 10 he had counted, then 20, then 30, and finally had reached his goal of counting 40 nickels for a roll equal to $2.00. He just put them in the roll and talked to us about whatever he wanted. He loved sitting on the floor with us as we had our “family meeting,” his words. Coins got rotated when we had enough so if he had done nickels, next would be quarters or dimes. When there were not enough coins to roll, we did laundry. Bruce learned how to measure detergent, line up the arrow to the appropriate setting, and recognize the letters of the words on the machines.

When the school budgets were cut, reading programs for mentally challenged students changed. Bruce was put into Life Skills classes and reading became a secondary focus. He still loved reading letters and asking what they spell. I had him read me the letters of the settings, say the word, and then find what word matched the setting we needed. He had even learned the correct measurement for the detergent. When the washer finished, we moved the clothes into the dryer and found that setting the same way. I had learned that folding clothes was not his forte, but for me, he always tried to be neat. His favorite part of this operation: putting the clothes away. Why? He loved going through our closets and drawers, checking out our clothes and shoes. “Lynne, listen to me. Listen, I would like to try that shirt,” or, “Yeah, I need those sneakers.” Being a clothes and sneaker hound himself, he was always on the lookout for something we had that he might want. Just for the record, Bruce had so many clothes that they were in labeled crates in the basement of his group home. He could open his own sneaker store offering a variety of styles and colors. We tried to be creative, sometimes going to the movies or bowling, but spending time at home together was always what we preferred as it afforded us the opportunity to talk and share family time. When the weather was comfortable, Bruce loved going for the two-block walk to our lake in the development. He was not one to choose to walk when he could be driven, so this was quite a pleasant shock and a challenge for me—if you remember, me being the power strider that I am. Bruce moved in minus speed, looking everywhere but where he was actually walking and talking at the speed I walked. Although I am an expert at deciphering his messages, even I had him repeat himself occasionally. He rolled his eyes, something else we have in common, took a deep breath and said, “Listen to me.”

“I am listening, you are talking too fast. Take a deep breath and try again.” Eventually I got it.

This is how I feel walking with my husband, who is not the strider I am unless pushed by an emergency decided in his own head, but definitely a faster walker than my brother. Walking from the car to the farmers’ market in Vail, one of our many favorite activities we shared on Sundays, had been more of a chore and less fun for me this summer. As he insisted on holding my hand, our pace had to match even before we merged into the crowds of the market. Need I elaborate any further? Just imagine how this conversation must have gone. Before that painful conversation, I tried giving hints, physical hints, gentle tugs, walking just a few paces ahead to bring him along to a compromised pace, because once we entered the actual market grounds of the wall of shoppers and meanderers, I would completely lose the battle of movement. “In death I will move faster than most of these people,” I grumbled. Whether entertaining Lucifer in my reserved suite for five or at the pearly gates with God, I’m a planner. Can’t I be an optimist as well? I will move, bend, twitch, or float faster than any of these people in front of me. Hence my urgency to pick up the pace in getting to the market and when we finally left the market, my hints went unheeded, my hand a captive as therefore am I.

Now, imagine me walking with Bruce in minus speed mode—not an easy feat. “Move your feet, Brucie,” I chanted. This had become our new mantra together.

“Lynne, how about we take a walk?”

“Okay, but what will you do?”

“Move my feet.”

Of course, now that he’d discovered the joy of walking, he also wanted to walk our greyhound, Brenda. Brenda is the smallest of our greyhounds, only sixty-two pounds, not a champion racer like the others, hence the name Brenda, and content to walk at a slower pace. But even she grappled with the lack of speed, sighing deeply, looking at me as if to say, “OMG, really?!” when Bruce got her leash for the walk. They had both learned to compromise. We ended up having to leave him behind by half a block which did make me nervous as Bruce would talk to anything and anyone, not paying attention when crossing the street. He was very understanding and had learned that he must wait at the corner where he could still see us upon our return to him. Brenda had learned that this was a shorter walk, only taking us to the next corner where we turned to come back. Then we hung out on the bench by the lake, feeding the ducks, which they both loved, listening to music on my phone.