Down Syndrome Awareness — "Disability" is a Relative Term

It’s midnight on a Saturday night and I just got home. No, I wasn’t out partying like in the good ol’ days. I was out, once again, retrieving my dear old Dad from another of his midnight forays. This time I was alerted that he was on the move and able to locate him and pick him up a mere 15 minutes or so after he’d walked out his door… thanks to Verizon’s Family Locator service. He wasn’t “going home” to Queens or Brooklyn where he grew up… the way he’s done a few times before. Tonight, he was just “out for a stroll”. Barely a quarter of a mile from his home of 44 years but he had no idea where he was or how to get back home. So Dad and I took a quick trip to Pathmark because that was my ploy, “I was just running out to get eggs for tomorrow’s breakfast when I spotted you walking”. I certainly don’t want him to know that we’re tracking him or he’ll purposefully forget to bring his phone. And, being out in public in my PJs at 11:00 PM on a Saturday night when everyone else was dressed for an evening of dancing gives a whole new meaning to the term “walk of shame”. As I got “the look” from passersby — a different look than the “what’s wrong with your child look” we mothers of children with special needs get all the time — I wished I could just point a thumb over my shoulder at him and say “Alzheimer’s… night walking” by way of explanation. How horrible is that? I realized that would be like pointing to my children and saying, “Down syndrome” as though that excuses or explains anything about me or them. (I’ll have to think on this to make some more sense of it!)

So I brought him home and he said he was going to head out again. I knew I couldn’t let that happen so we ended up sitting and watching a DeNiro movie together instead. Finally, my sister (who lives upstairs) showed up and together we calmly tried to explain to him why he can’t go out walking at night… He didn’t get it. He’s not ABLE. His Alzheimer’s-riddled brain doesn’t understand anymore.

If yawning is any indication, I think he was tired enough to retire for the night by the time I left just past midnight. I haven’t received any text messages so I’m assuming he’s gone to bed by now.

As I drove the half mile home, I felt good knowing that despite all this late night excitement, my children were sound asleep at home with their Daddy, all safely tucked into their beds. That’s when I decided that having two children with Down syndrome is a breeze compared to having a Dad with Alzheimer’s. Life does not afford us the opportunity to choose our disabilities or the age of onset for ourselves or our loved ones. But tonight’s lesson came through loud and clear…. Truly, “disability” is a relative term!


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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2 Responses to Down Syndrome Awareness — "Disability" is a Relative Term

  1. Kelly says:

    Hi Maggie, I just happened to stumble accross your blog and I'm glad I did. This is such a great post! I too have been blessed with 3 angels of my own, 7, 4 and Landon, my 11 month old who aslo wears designer genes:) Disability "IS" a relative term. No explanations needed. I'm glad your dad made it home safely.

  2. starrlife says:

    How hard that is Maggie! Aren't there alarms that you can set up for him or funds for an overnite companion to keep an eye on him at night? I'm so sorry- I truly know how hard that is.Hugs.

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