Walking the Path of Aging Alongside My Son With Down Syndrome

“Listen to me, Old-Old Woman!”

Well, I don’t hear a word Charlie says after that because seriously, isn’t one Old enough?

I definitely think so.

As a 55+ woman, I am taken aback at how invisible I have become in the past decade of my life. Walking into shops, restaurants, and even simply down the street, I notice that I am no longer noticed.

Eyes of all ages slide right over me, even with my expensive highlights and the occasional Botox. It’s been annoying, no doubt. But with age, my voice has become stronger and more confident, so that when I need to assert myself it comes more easily. (Although my name is Karen, so there is that new linguistic baggage that brings with it its own set of issues when I become vocal.)

But luckily these experiences have aided me in relating to and empathizing with my adult son with Down syndrome. Now when we go out in the world together, well, it’s almost as if we don’t exist.

Until we do.

And when a face does see us, unfortunately, it is infrequently a kind smile. Instead, eyes filled with sadness, disappointment, and even fear stare back at us. I don’t want to describe our experiences in detail, because frankly if you know, you know. And besides, it’s time to shift the narrative here, to hijack a term often used by families with younger kiddos with Down syndrome.

Because here’s what you should see, here’s what should be running in your thoughts, here’s what having an adult with Down syndrome in your life can mean.

There is a whole lot of love going on: like for a lifetime.

How is a lifetime of love a bad thing?

There is an endless supply of personal growth.

How is becoming a better you a bad thing?

There is amazing comfort in aging with someone rather than existing in isolation.

How are relationships in old age a bad thing?

Now I know that raising an individual with Down syndrome is not all butterflies and sprinkles on cupcakes. Yes, there is often a lot more work, a lot more support, a lot more advocating and a lot more money required. These challenges though are related primarily to how society engages in supporting the DS community; the challenges do not stem from the individual with DS, but rather in how society responds to the diagnosis.

A life with DS is similar to any other life in that it is filled with ups and downs and in-betweens. Down syndrome does not mean a life of burden or a lifetime of burden. It is simply a different path. And different is not bad. It does not have less value; some would argue it has more.

I will always argue it is priceless.

So if you see that Old-Old woman and her adult son with Down syndrome slowly making their way down the street, here are a few examples of reframing that inner voice:

How amazing to be so loved for your whole life!

How remarkable to face life’s challenges with people who believe in you!

How lucky to spend your life with those you love!

And please smile. I promise to smile back, but no guarantees about Charlie because he will most likely be negotiating another trip to the bakery, another stop for chips ‘n salsa, or another VHS tape to purchase. Obviously, I will value every loving second of it.

So should you.