Mar 202018 3 Responses

We Still Need Down Syndrome Awareness

We are aware, but we still need more awareness. March 21 is World Down Syndrome Day. It’s a day set aside to raise awareness of people with Down syndrome and to highlight the contributions they make to society. This is the first year in which Ella has understood the day and anticipated it. She’s trying to make it into another birthday. I honestly think she expects cake, balloons, and presents. She’s going to be disappointed.

The past 12 years of raising a child with Down syndrome have been interesting. In many ways, the experience has been far better than we could have imagined. We’ve been fortunate to avoid most of the health issues which can be associated with Ds. We were told school would be a nightmare, but it couldn’t have been any better. Every administrator, teacher, and staff member has been supportive and helpful. Ella’s classmates have been caring friends. As we begin the transition to junior high, our school district continues to impress us with support. Maybe it’s because it’s the only experience we’ve had, but raising Ella is pretty much like raising any other child. Some of the problems are unique, but generally speaking, you just have to navigate whatever comes your way. (See: What Down Syndrome Looks Like to Me)

But there are struggles. The cooking videos are edited. The Facebook pictures are intentionally chosen. And the stories I tell on Sunday mornings are only the stories that are funny and not embarrassing. When we are off stage, off camera, and off-line there are struggles which are reasons that we still need days like this.

We’ve come a long way regarding awareness. Jenny and I are grateful for those who went before us twenty, thirty, and forty years ago to begin the movement of inclusion for people with Ds into society. It’s a radically different day because of their work. The internet has been a great blessing regarding all disabilities because it has told the stories and personalized situations so that others can understand. We are grateful for the day in which we live.

Yet we still need more awareness. We need more so that:

  • Silas won’t have to hear people make fun of his sister. (It happened at church last month.)
  • I don’t have to ask people to stop using the R-word. (It happened last week.)
  • Ella doesn’t get ignored simply because she’s different. (It happens every week.)

We’ve come a long way but we still have a long way to go. I think the greatest sense of awareness needs to come with the understanding that far more than we need to be there for Ella, she is here for us. We are the ones who are learning. We are the ones who would suffer if she was not in our communities. We are the ones who need to invite her, include her, and interact with her so that we can grow. If we don’t, she will suffer, but we will suffer more. (See: What Down Syndrome Teaches Us All)

Maybe our greatest struggle in this season of life is for Ella’s relational needs. While she is delayed in many areas, her need for friendship and connection is exploding. Sadly, in our community, there is not a large population of people like her. While she has some kind friends who love her, she needs some true peers who can walk beside her. This is our latest challenge and we are trying to figure out how to navigate it.

One thing that I love the most about Ella these days is how quickly and openly she is willing to talk about Down syndrome. I love the shock on strangers faces when they ask about her and she says, “I have Down syndrome.” She’s fine with it, but they have little idea of how to respond. They stumble and stutter over their next line and she looks at them with the same expression as if she had said, “My hair is brown.” (See: Down Syndrome Is Not My Problem)

To her, Down syndrome isn’t a disease; it’s simply a syndrome with some characteristics and she has them. She isn’t uncomfortable about it and no one else needs to be either.

For me, this is a convicting day. Even as we celebrate World Down Syndrome Day, I’m ashamed at my lack of awareness of the needs of so many people. Some of whom I interact with on a regular basis and others whom I have never seen. To me, this day reminds me that I need to listen better, pay more attention, and seek to understand the stories of others. Just as I know people would benefit from getting to know Ella, I would benefit from getting to know the unique qualities of others.

If you see Ella today, don’t fall into her trap. She’ll try to get you to buy her cake or presents, but don’t. This isn’t her birthday. It’s World Down Syndrome Day.

 

 

3 Responses to We Still Need Down Syndrome Awareness
  1. Karen Reply

    I feel the poignancy in your heart. For my family, the great joy is Tiff, her achievements are legendary, her happiness brings us laughter and satisfaction. Her love of Jesus, and the church is inspiring and makes us better humans. She brings out the best in all she meets. Her innocence and naivety are charming and brilliant. And yet, the pain and worry is ever present. We are blessed with this child of God.

  2. Linda L Reply

    Excellent article! I think 1 or 2 balloons wouldn’t hurt! I am encouraged to hear that your school experience has not been horrible! Praying we have the same good experience in a few years when our grandson is ready for school. I think your articles help a lot of people understand DS. Keep up the articles to increase awareness!

  3. Jo Reply

    Kevin, you speak like a proud father, and it is uplifting to be reminded of the dignity and worth of every human being. Ella is beautiful!

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