We try to invoke conscious Down syndrome planning at our house regularly, rather than just dealing with whatever comes along.
Life is Happier When we Plan, With Purpose
Last year my son, Jack, who is nineteen, walked into the living room in his Denver Broncos jersey with his heart set on his team getting a shiny new trophy. Unfortunately, there had been no conscious Down syndrome planning by his parents. Jack’s intellectual challenges made the game even a bit more cruel to him than other Broncos fans because Jack didn’t realize that the game was over by halftime. There was no transition time for my son to move from denial to a sad, but real acceptance. Jack thought that his team still had a chance to win until the last second ticked off the clock. Then he sobbed. He refused to be consoled. I was surprised at how hard and personal he took the defeat.
Amy decided that if we wanted to ensure that there wasn’t a chance at a repeat of the emotional meltdown that Jack had the year before, it would take some conscious Down syndrome planning.
When Jack’s favorite team, the Denver Broncos, didn’t make it to the Super Bowl this year he was disappointed. Still, I believe he was considering the odds of a happy ending when he chose to cheer for the team that beat his team in the Super Bowl the year before. My wife could never be a Vegas odds maker for sporting events. To her, there’s a fifty-fifty chance of either team losing any game, even if it’s the St. Mary’s School for Troubled Young Women Tennis Team vs. the AFC champs in football. Amy decided that if we wanted to ensure that there wasn’t a chance at a repeat of the emotional meltdown that Jack had the year before, it would take some conscious Down syndrome planning.
When Jack went into the kitchen to help his mom make his famous Super Bowl Queso Dip, he boasted to Amy about the pending win of the Seattle Sea Hawks. My wife, whose dedication to any particular football team could only be compared to her preference on who might win a belching contest, put her conscious Down syndrome planning for the evening into motion. She told nineteen-year-old Jack that if the Seahawks won the Super Bowl, that she would be happy for him. Then she told him that she really wanted the New England Patriots to win. She asked our son if he could please be happy for her, if the Patriots happened to win the game. Jack agreed.
I was dumbfounded as I wondered if heaven itself had invoked some conscious Down syndrome planning of its own.
As the game went back and forth, Jack was excited, particularly as his team pulled ahead. Toward the end of the game, as the Patriots led, he grew nervous. But as I mentioned before; with Jack, the game ain’t over ‘til it’s over. He jumped up and down yelling and screaming ecstatically when the “Hail Mary” tipped pass fell unworthily onto the chest of the Sea Hawk who was lying on his back just shy of the goal line, with only seconds to go. I was dumbfounded as I wondered if heaven itself had invoked some conscious Down syndrome planning of its own. Seconds later, my theory was shot down as heaven took away the unworthy reception with an interception that gave the Super Bowl win to the Patriots.
My wife, with a little bit of forethought and some conscious Down syndrome planning had ensured that her son had a happy evening, even against all odds.
Jack jumped up screaming “No. NO! NOOO!” while stomping his feet. Then he stopped. He turned to his mother with calmness, if not happiness on his face. “Congratulations, Mom,” he said. “Patriots did a good job. You get the red plate. I will give hugs to the Sea Hawks because they are crying right now.” We have a tradition in our family where a person who is having a special day (such as a birthday or great report card) gets a bright red ceramic plate for dinner. My wife, with a little bit of forethought and some conscious Down syndrome planning had ensured that her son had a happy evening, even against all odds.
We try to invoke conscious Down syndrome planning at our house regularly, rather than just dealing with whatever comes along. When Jack asked if he could buy a truck, rather than explaining why that would never be possible, we thought outside the box. We told Jack that if he worked hard at his job and saved his money, we would help him to buy his own truck, but he wouldn’t be able to drive it. When he asked why, we explained that we didn’t want him to hurt people because that would make everybody, including him, sad. He agreed, but told us that he needed the stereo in his truck where he had control. Since Jack is always happy to share, the next pickup I buy will be one I need to ask his permission to borrow. It will come with the added expense of putting in a stereo that I can’t reach from the driver’s seat. (I’m accepting donations for the hearing aids that I’m quite sure I’ll need to purchase for myself soon after that happens.)
We used the fact that Jack’s life involves aging grandparents who sometimes need a little help to enable some additional conscious Down syndrome planning.
Several months ago Jack told us that one day he would need to buy his own house, get married and move away. We have always hoped that Jack would be able to have his dream of being married fulfilled. However, since he will probably need at least a moderate amount of help, we hoped that could happen within his very supportive family. My parents live quite self-sufficiently on one of the levels of the house that we live in, but where we are available to help on the rare occasions when they need it. Jack is very accustomed to having my parents around. We used the fact that Jack’s life involves aging grandparents who sometimes need a little help to enable some additional conscious Down syndrome planning. Our family will not always need the large house that we live in so eventually there will be at least one more move. I asked Jack if when he gets a house of his own, if he would let his mother and me live with him and his wife, and if they would help us when we needed it like we help Grandma and Grandpa. Jack was all too willing to agree to help us. I think you know where this is going.
With the busyness that comes with raising children who have Down syndrome, I think that as parents we often get so busy dealing with the day-to-day that we sometimes miss invoking intention. But life is so much sweeter for us and for our children when we step back, take a deep breath, set the obvious aside and practice conscious Down syndrome planning.
Often, readers receive as much help from other readers in the comments section as they do from the blog article, itself. Please be generous with your thoughts and experiences in the comments section. There are lots of people who need what you have to share. This is your chance to help them.
Read more articles by John M. Simmons about Down Syndrome/Intellectual Disabilities
Return to John M. Simmons Blog
Ensure you don’t miss anything when you sign up for notifications.