People Say My Son “Suffers” From Down Syndrome. I Disagree.

Rose Godfrey   March 25, 2016   3 Comments

Let’s Talk About Down Syndrome

Not suffering from Down syndrome at Mabry Mill in Virginia.

Not suffering from Down syndrome at Mabry Mill in Virginia.

For the past week or so, I’ve seen quite a lot of articles and posts about Down syndrome. That’s because this past Monday was designated World Down Syndrome Day. I had intended to write something here that would be awareness-y, but, as often happens in my life, I got distracted by doing all the family oriented things that are priority in life. March 21st, as you may have heard, is designated as WDSD because of the date: 3/21. My son has 3 copies of the 21st chromosome. People without Down syndrome have the standard 2 copies of that chromosome.  That extra copy of the 21st chromosome is what sets Dominic apart.

Because of my interest in the topic, I have Google alerts for Down syndrome and I have a lot of DS-oriented pages in my newsfeed on Facebook, so I might have a lot more exposure to the topic than the average person. This past week, I saw the trickle of news turn to flood, and overall that is a good thing. However, there were a handful of writers who still wrote that the person they were discussing “suffers” from Down syndrome. In some of these cases, it was clear they’d never even met the person–so how can the writer assign suffering as a characteristic of a person they’d never encountered?

The first case I saw was actually related to a very sad event–Butchie’s Pool, located in a town that is more or less my hometown, is closing. Butchie’s Pool is closing after 40 years of serving as a place for people with disabilities–short or long term–to come and receive therapeutic services in a heated pool. Butchie’s Pool was started in honor of a man in the community who had Down syndrome. (note to Fox40 News, he had DS. That’s the proper terminology).

And maybe it just got under my skin a little bit that the first news story I saw about Butchie’s Pool closing–and hoping for a miraculous infusion of cash to keep going– mentioned the “suffering” with Down syndrome as if there is some sort of innate discomfort that comes along with having an extra chromosome (please note: the journalist used that description, not the facility as far as I am aware). Reading that story was followed by reading a couple more on different areas where, again, “suffering” was part of the description. I mean, seriously, people, have you met anyone with Down syndrome?

So What Are We Afraid Of?

Let’s get the obvious over with up front: People with Down syndrome have intellectual differences. For the most part, that includes delays and a lower than average IQ. Muscle tone is lower. Some people with Down syndrome have heart defects that require surgery and some have thyroid problems. I would remind you that people in the general population–who have the standard set of chromosomes–can have all of those issues as well. I know terminology changes with time, so let’s change how we address this issue. “Has” is a perfectly great word to describe a condition. My son HAS Down syndrome. It is one aspect of who he is.

True suffering: Nap time.

True suffering: Nap time.

As a speech pathologist with experience in early childhood development, I can tell you that my son Dominic’s development is on a different pace than that of his older brothers and sisters. Still, I’d hardly say he is suffering. He celebrates pretty much every occasion (except nap time. Judging by his howls of protest, he truly suffers at nap time). Let me tell you how Dominic has “suffered” through this past week.

Because his older sister was turning 16, we traveled down to see friends. He rode the go-kart with his big brothers, went for walks, ate ice cream, and snuggled up on the couch to watch a movie. We went to church together where he got so many kisses from the ladies that he had lipstick marks all over his face by the end of the morning. The next day, we went over to Linville Caverns in North Carolina and stayed in that area for a couple days, then he traveled with us to Virginia. In his 3 years, Dominic has “suffered” his way through about 25 states and across the ocean to Japan and back again. Along the way, he has charmed everyone he meets.

You can see Dominic’s cave adventure here. It isn’t much about him (fair warning) because he just integrates into everything we do–he’s enjoying going “bup” the stairs:

Yesterday at a restaurant, Dominic started pointing to a little boy at another table. I asked him if that was his new friend. Dominic started pointing to everyone in the restaurant and telling me “friend” for each one. More suffering.

During play time outside, Dominic and Isabella were playing “kitty,” one of his favorite new games in which the kids played with the cat and then pretended to be a cat. This sort of game has been a standard for all my kids around age 3. On his own, Dominic reached down, grabbed his leg and used it to start scratching behind his ear. Pretty perceptive for a boy who doesn’t yet use full sentences. He sees. He understands. He communicates so much in so many ways.

Not suffering at the Jefferson Memorial in Washington DC.

Not suffering from Down syndrome at the Jefferson Memorial in Washington DC.

Last evening, back at the house, I was dancing in the kitchen with one of my older sons. My daughter was washing the dishes. Dominic came over to join in. He has no knowledge of exclusion in his life. He pulled on Olivia’s shirt tail. “Please, dance?” he asked. She stopped washing dishes and they danced and giggled their way across the kitchen.

This is a very small sample of experiences in our lives–and they are typical. Dominic has a happy life, and all of us are richer simply because he is a part of our lives.

The Power of One Word

Not suffering from Down syndrome at the beach in Misawa, Japan.

Not suffering from Down syndrome at the beach in Misawa, Japan.

I know “suffering” is just a word. I know most people who say it or write it don’t even think about it. But I do. And it worries me. It worries me because women all over the globe are pressured to abort children simply because they have a prenatal diagnosis of Down syndrome. These are wanted children who are suddenly seen as “at-risk” of a whole host of things–among those things is “suffering.”  There are children who may be discarded before they have a chance at life because of a fear of potential suffering. It is an unfounded fear. All children suffer–all people suffer–that is a given in life.

Not suffering aboard the USS North Carolina.

Not suffering  from Down syndrome aboard the USS North Carolina.

Yes, it is true that a child with Down syndrome will bring challenges (all children do. Believe me, I know). There will be therapy appointments and that child will have to work harder to do some things. And yet, other things–like friendship and love and acceptance and joy, to name a few–will come more easily to a child with Down syndrome than to other children. If we can change the meaning of the word “suffer” to where the only thing that it means is having a happy and contented life, being included and surrounded by people you love and who love you, then I’ll reconsider. If we can say that “suffering” means having a rich and productive life, setting and achieving goals, then yes, when that day comes, I will say my child “suffers” from Down syndrome.

 

 

 

About Rose Godfrey

Rose Godfrey is a speech pathologist and mom. Her son, Dominic, is the inspiration for the Trisomy 21 Club blog. Rose writes about homeschooling, travel, parenting, Down syndrome, and sourdough. Yes, it's an eclectic mix. She has written four books: Start Homeschooling Today: No Experience Required, Sourdough Simplicity, The Pig in the Pantry and Other Homeschool Tales, and Don’t Put Headphones on the Cat.

3 thoughts on “People Say My Son “Suffers” From Down Syndrome. I Disagree.

  1. Leigh

    This is so very good! I completely agree with what you wrote! It used to/no still does drive me nuts when people say “my hopes and dreams were/are dashed because my baby was/is diagnosed with DS.” T-21 is part of who my child is but it is not all she is. She is so very much more than that!!

    Reply
  2. Patricia Lindsey

    Rose! I Googled you and found this blog. We have been out of touch for too long. I knew you had Dominic, but did not realize he has T-21, or that you’re still on your grand traveling adventure.
    No surprise, I love this post. “Suffering” indeed. The projections of those with typical children upon those with special needs…. and upon us, their oft-canonized parents, may be well-meaning, but ultimately destructive in my view and experience. It strikes me as particularly inapt for people with DS. If anything is typical, it appears to be an openness to joy in large measure (nap time aside), and a marvelous capacity to spread that joy to others.

    I’ll start catching up on your writings and let’s be in touch.

    Reply

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