My son Alex went on his first date this past weekend. I had all of the big feels that go along with a child’s first date with a whole lot of extra. My son has Down syndrome, and when he was younger I thought dating would never happen.
When Alex was born we read books about Down syndrome. I didn’t realize it then, but those books were written with a backward view; they explained Down syndrome and what to expect and how many gains had been made since people with Down syndrome were able to get therapy from infancy, but they stopped in the past. And so did I.
My son was a boof-haired, sweet, gentle baby who grew into an active and comical toddler. It was easy to see his adorable face and sweet demeanor and fall right into Peter Pan syndrome.
The adults I knew with Down syndrome had never really grown up. They didn’t work, they lived with their parents, and were sheltered. The books I read supported that perspective, and I followed it.
Fortunately, Alex is not one to be shoved into a box. He defied my expectations from the start, and he still does. From the time we started discussing his adult aspirations, marriage has been one of them. Fortunately, in the meantime, social media has burgeoned. My feed is filled with people with Down syndrome and other intellectual disabilities and many of them are defying the limited expectations society has for them and living full, rich adult lives, complete with education, jobs, and marriage. As Alex has expressed his desires, I have seen others living out those same desires, and I have realized what is possible.
My Down syndrome awareness has grown up with my son. Peter Pan syndrome was left in the dust a long time ago.
I recognize Alex is a complex human being with all of the desires and needs that come along with being an adult. It is not for me to limit his experience or squelch his desires. Just like with any other child on the cusp of adulthood, it’s up to me to support and empower him to his chosen next steps, whatever they are. He is a competent, capable, and confident young man who is eager and excited to step into adulthood and ready to determine his own fate.
It has been frightening for me to step back from my initial notions of what parenting an adult with an intellectual disability would be like. I found comfort in those old-fashioned notions of eternal boyhood. Letting that go and getting out of my comfort zone hasn’t been easy, but it has been worth it.
Alex never did fit into the box I tried to squash him into.
I sometimes struggle to keep up with him, but isn’t that the way with all kids? He isn’t slowing down for me though, and I no longer want him to. I’ve raised a fine young man, and it’s up to me to set him free to do all the things he’s ready for.
My son with Down syndrome has a great future, and I’m stepping out of his way and watching him soar.
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