Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Tuesday, October 9, 2012

Down Systems ;o)

My conversations with MA about Down Syndrome tend to go like this~

me- "What do you think of these little boys MA?"

MA- "They are cute! I love them!"

me- "Guess what! They have something like you!"

MA- "Oh- yeah?"

me- "Yes! They have something you have!"

MA- "I'm a handi-capped."

me- "What's it called?"

MA thinks on this.

me- "You have Down Syndrome!"

MA- "No, I don't have that, SP has that!"

me- "No MA, SP has mental illness like your brother DE. You have Down
         Syndrome. Like (I list her friends) do too."

MA- "Oh!! The boys have Down Systems? Oh!! I have Down Systems

me- "Yes!! And we LOVE people with DS. People with DS are smart and 
          beautiful, and lots of fun."

MA- "I'm smart!" (then she laughs with a big hearty laugh)

me- "Yes you are! And I LOVE you! And you are BEAUTIFUL! And we
         LOVE people with DS. We LOVE our little boys with DS too!"

MA- "Oh, I didn't know that- I didn't know the boys have Down Systems
           too! (then she names each boy and asks me if he has DS, then she
           names the other kids and asks if they have DS.)

me- "What is it called MA?"

MA- "Down Systems! I have Down Systems!" As she grins from ear to ear!

There was a time when a show called "Life Goes on" was on TV and MA first watched a young man with DS act on TV.  The show helped her make sense of Down Syndrome. He had a life, she had a life! :o) He was also quite the advocate for DS. So he would be seen around the Country and MA identified with him. We have long forgotten him.

Now we don't seem to "talk" a lot about DS in our community. People with DS have culturally assimilated into our society by mainstreaming in schools, working in the community. Some of that very specialness of DS has become lost. MA used to feel unique about herself when we were in public and others stopped to say hello. Now I'm afraid we see so many people with disabilities throughout our day that it has become common place. Fewer people tell MA hello. Fewer people call or stop to visit her.

Twenty five years ago when MA and I met, my kids and I would have dinner conversations about the people we met or saw that day who (with special needs) touched our lives. We'd think of ways to reach out to encourage them. Now it feels as if we've included them in our fast paced world so much, it isn't really that big of a deal. We need to remember it is still a gift. It is a big deal. Each milestone a person with DS makes should be celebrated, not taken for granted.

I see this with my 8 yr old son with Dyslexia. No one knows he has it. You can't see it like DS. But some days he needs that encouragement that "Hey! You are doing a great job!" or  "I noticed that was hard for you, but you did it!" To encourage him and let him know the struggle is worth it! People care.

So let's try to slow down, step back, look at all of the LOVES in our lives with DS or any challenge. Give them a big hug and a pat on the back, and tell them "Cool!"
It will make their day! and yours too!


  1. I remember "Life Goes On!" I loved that show. I'm glad to hear MA enjoyed it too!


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