The first time we saw Grail he was five months old. The birth family and adoption councilor were all oohs and aahs about how much he loved to snuggle in. Curious that they thought there was nothing wrong with the fact that a five month old could not lift his head. Most likely they blamed the Down Syndrome. Just like the glee they had in his lack of tongue control. “What do you expect, he has Down Syndrome” I made a vow to myself that I would expect more. No excuses, higher expectations. We saw right away that he was a people person. Grail loved to make eye contact. Loved to make interactive noises (His way of talking) to those in the room. Therapists told us that Grail’s awareness was a good sign. They hinted that his DS was on the “Milder” side. My resolve to have higher expectations for my son grew. I would have none of this sitting in the corner with his tongue hanging out. I envisioned my son with a job.
I just knew he’d be able to have a job busing tables or emptying the trashcans at the food court. I just knew that once he was old enough to leave home he’d be able to live in a group home with other DS adults and become pseudo-self sufficient.
As Grail grew he became much more physically active, strong and capable. He could run and climb. People in the nursery would call him, “That Fast kid”. I cultivated my expectant thoughts in the self-satisfied, if not sanctimonious recesses of my mind. Each milestone we celebrated as a little victory and every time pride welled within me as we saw how Grail grew into a strong, energy filled, and athletic little boy. Friends and family marveled at how obedient my son was. They remarked how amazing it was that a child of his age with DS could know what, “Get self control” meant. “Of course”, I would think smugly, “I have high expectations for my boy”.
Pride can be good, but pride when focused incorrectly, can be an ugly thing.
Welcome to Kansas City and the 2007 National Down Syndrome Congress Convention. Welcome to the slap in the face of my reality. Married DS couples? DS karate instructors? Oh my, DS associate degree holders who swim the English Channel!? My world was turned upside down. Cleaning tables? Taking out Trash? My “High expectations” that I held for my son seem pretty low if you ask me.
What I now realize is that it’s OK for me to have High expectations for Grail. My son may not earn an associates degree or run a marathon, but I need to cultivate and encourage his interests. While doing so I must support every goal that Grail sets and relish in every victory that Grail celebrates. Most importantly throughout whatever path Grail sets to follow I need to just enjoy my son.