Our Son, The Teacher

    I think back to the day Ian was born and clearly remember so many of the details. His birth, the diagnosis by the doctor, the phone calls to family and friends. It’s often said that parents go through a mourning period after a diagnosis of Down syndrome. I remember being scared, but not sad. I remember a mix of reaction from friends & family, and some were sad.
I remember my husband’s unbelievable sense of humor given the circumstances. We didn’t know if we were going to have a girl or a boy. If it was a boy, we had chosen Seth, and joked during the pregnancy that Seth Kastner would be a tough name for a kid with speech problems. I knew we were going to be just fine when Mike looked at me after the doctor told us and remarked, “I don’t think the name Seth is going to work.” (To this day, that still makes me smile.) I asked him to choose a name, and without hesitation, he said Ian Thomas Kastner. I remember after making the round of phone calls, this quiet & strong man also questioned, “Why can’t people just congratulate us, we had a baby boy.” I remember looking at him and telling him that we are teachers, and how we treat Ian is how others will treat him.
We‘ve raised Ian without the label of Down syndrome. Not that we were shielding him or his brother (or us) from it, we just didn’t want it to define him … and it doesn’t. And through the years, he became the teacher.  People who meet him are in awe of this boy’s abilities. He’s loving, perceptive, confident, funny, smart, active and athletic. He takes trumpet lessons every week and reads every day.  He’s such a hard worker. He makes to-do lists, because he has things to do! He LOVES music. When I asked him who his favorites singers are, here were his top picks — Seal, Beatles, Rolling Stones, k.d. Lang and John Hiatt. His brother Joe sees Ian as the life of our family, and says he can make a quiet room fill with laughter & excitement ­– and he does.
Not to say there haven’t been challenges — there have been many. Our latest is puberty. Ian wants many things that a typical 13 year old wants, including; a girlfriend, to play video games beyond his age and to get his driving permit when he’s 14.  His pediatrician jokes that, “Ian doesn’t realize he has Down syndrome, does he?” Yet, on some level, he knows. When we see a kid with Down syndrome, he’ll say “He’s like me.” As Ian gets older, he has a greater understanding of himself and the world. Our job as parents is to give him information as he is ready and in ways he will understand. I guess we are all teachers.   -Nadine, Ian’s Mom

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