When our son Alex was born with Down syndrome it didn’t take us long to embrace him for who he is, exactly as he is. And it didn’t take long to realize how many misconceptions and how much misinformation there is about Down syndrome. Without missing a beat we placed the advocate hat on our heads, where it has remained for the 17 years since. Even as we stood up against the misconceptions of others, we unwittingly embraced a few of our own. We had bid goodbye to the idea of “normal” adulthood for him. We doubted he would have meaningful work, planned on him living with us for life, and considered marriage just about impossible.
Thankfully, in the meantime, we’ve learned to take chagrin in our morning coffee, because he has been busy proving us wrong from the very start. This weekend he took yet another opportunity to show us just how antiquated our beliefs about him are. He went on his first date.
The date was an evening of dinner and a movie with ice cream afterward with his girlfriend Brooke, chauffeured by her mom. It’s been a long time coming, Alex and Brooke have been friends for a couple of years, and have been talking on the phone, texting, and hung out a few times over this past summer. The real, Friday night date was the next logical step for the young couple. They even held hands.
Over the years we have constantly evolved our expectations of our son. As he learns, grows and expresses his own desires, we have learned and grown and changed our desires to match his. It might be more comfortable to stay stuck in our original notions and expectations of him, but as it has been from the start, it’s about him, not us.
We did a lot of things correctly from the very start with Alex, and we have served him well. But we failed to recognize the full spectrum of who he is and how capable he is. We fell into the trap of viewing him the way so many see people with intellectual disabilities. We failed to recognize his depth and breadth. We failed to see him as fully human with all of the needs, desires, drives and ambitions, strengths, and weaknesses that human beings possess. We saw him as one-dimensional, a sweet little boy who would never grow up.
But grow up he has, and we have with him. He has dated, and if he so desires, he will marry someday. He will enjoy meaningful work and the joys and sorrow and successes and failures of the human experience. Where once we looked forward to a sort of Peter Pan experience of lifelong boyhood for our son, we now recognize that he never fit into the box we tried to squish him into. Our Down syndrome awareness has grown up right along with our son, and it will keep on growing and changing. It has been a great ride, and even though we didn’t realize it at first, he has been in the driver’s seat the whole time.
Alethea Mshar is a Special Needs Mom and Blogger.
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