D is for Down syndrome, obviously


I note my reaction to posts and fundraisers about other diagnoses. I don’t (can’t) read every piece about autism or Fragile X syndrome or Angelmans syndrome. I don’t even know exactly what they all are. There is only so much room in my brain for information, and there’s a lot to know about Ds. This reflection makes me realize that the rest of the world is not hanging out to know about Ds.

But pretty much all of us come into contact with people with Down syndrome, and we can all use a hand in understanding each other. So, let me tell you about Kepler, in case you meet him one of these days.

The social piece of Down syndrome

Kepler is the most (or at least tied for first with his sister) social member of our family. Everywhere we go people seem to know him. He becomes the connection for me with strangers and yet-to-be-friends. He cares about your facial expression, your interest in him, your desire for him to be a part of what you are doing. He loved helping our neighbor water his grass the other evening. He is careful and does the best job he can.

Kepler can be very easy to get along with, and he can also be tricky to get places with. He laughs from the depths of his being, and his determination is fierce. My job as his mom is to support and guide him in using that determination as a positive force, something that helps him become the best version of himself.

What You Can Do

Realize that every interaction you have with a person with Down syndrome is teaching them something. If you let Kepler stroke your hair or go in for an unasked-for hug, he is learning that it is ok to touch other people without their permission. Not much of an issue when he is little, but it becomes a BIG issue when he is bigger. Head him off at the pass by reaching out to shake his hand. Model for him what is appropriate, what you do when you come into contact with another adult or stranger. Tell him “Please ask before you hug.” Simple things with kindness.

The accommodative piece for Down syndrome

People who do not live with Ds sometimes think that the person with Ds must simply fit into the world’s expectations.  And while it is true that a person with Ds does have to get along with others and at some point do things the way their environment asks them to, those in his environment also must adjust to doing things more slowly, more deliberately and more times. This includes giving instructions, completing tasks, making transitions, and understanding how the person thinks about things. This delicate balance I am still learning to manage.

What You Can Do

Remember that behavior is always communication. Notice the context where it is happening. Who is there? What is happening right before and right after? Always allow extra time when working with a person with Down syndrome. The relaxed pace is better for everyone and truly gives the child/adolescent/adult the best chance to succeed.

Keep it Simple, Sweetie (The KISS method)

Yesterday, I online chatted with both Cincinnati Bell and Time Warner. Just a little thing in the course of a day. Many of us do similar things throughout the day. However, while I chatted, I also played basketball outside with Kepler, chased the ball, made sure I didn’t get disconnected on the chat, had the actual conversation, waited in line with Kepler, and told knock-knock jokes with him between chat comments. Doing all those things simultaneously is not ideal. It’s pretty stressful, actually.

Ideal would be leaving my phone in the house while I play basketball outside, and being prepared for every eventuality.  A motto of my family of origin was, “Make the most of every opportunity.” I think I have interpreted that to mean, “Do as much as possible at all times.” Those really aren’t the same, are they? Making the most of every opportunity means being present where I am, which happens to be wise advice for all of us, whatever our station in life.

What You Can Do

Consider abandoning multi-tasking, either altogether or for periods of time each day. I have noticed that when I provide half of my attention (or less), I get half as good (or less) behavior. Make sure you have his attention. Say his name and make sure he is listening before you give him an instruction. Recognize that simple instructions are best, and if you repeat them, use the same words. Even if you prefer variety, he thrives on routine, repetition and review.

What other suggestions do you have for helping someone with Down syndrome be as successful as they can be?


10 thoughts on “D is for Down syndrome, obviously

  1. Thx for the valuable insight Susan. He sounds like a very special young man. Grae just said to me then that he dearly hopes we will see you guys again sometime and meet your children.

    Liked by 1 person

    1. Same here, Deb. There is a slight possibility that Greg and I and Kepler will be visiting Australia in the next couple of years. If we make it to Aus, we will absolutely without a doubt see you.


  2. You are an amazing person to be able to juggle online chats with child care. I noticed the other comments say how special Kepler is. That’s true, of course, but his success, his ability to make friends, is due to the efforts and care of his very special mother. Thanks for sharing a little piece of your life.

    Liked by 1 person

  3. Interesting post with a lot of great information. The social piece you mention brings back a memory from when my girls were little. The bagger at my local grocery store had downs syndrome. Every time we would go through her checkout line, she would be so excited to see my girls and would comment on how cute they were and interact with them. It always made me smile. WeekendsInMaine

    Liked by 1 person

  4. This was such an informative post – thank you! I think giving your undivided attention works better for all kids (although it isn’t always possible). The one piece of your post I’ve been reflected on myself for the last little bit is the need to adjust environments to those with different abilities instead of thinking it is the person who needs to adapt. I am an active alumna of my university who does quite a bit for students with disabilities and my eldest needs additional help at school and will for at least the next few years (not sure what the issue is yet but she is delayed) – it’s made me think about differing abilities and what they mean. Not in a negative way, but in a “of course she can do this” she just needs the scene to be set a bit differently to ensure success.


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