Friday, March 21, 2014

World Down Syndrome Day.

March 21 is World Down Syndrome Day.

Ellie spent her first World Down Syndrome Day (WDSD) in the NICU.  She'd come home a few days later.

This year, I am joining with some fellow DS Mamas to share with you "a day in the life."  You've already read about a day in my life, but what's it like to be a child with Down syndrome?



Ellie's day starts early.  Between 4:45 and 5:00 am, she decides she is ready to wake up and fusses until someone comes into her room.  After hugging Matt or I, she starts making requests for toys or food.  Sometimes she wants her shark, or her Hello Kitty, or a cookie.  (We say no to the cookie.)

Eventually, we head downstairs, where Ellie takes medicine and eats breakfast.  Matt gets her ready for school and she rides the bus with her friends.

At school, Ellie is in a class of kids her age, all with special needs of some kind.  She is the only child with Down syndrome and the only girl.  She has a snack, circle time, library or art or music or PE, and the class has gross motor time.  Ellie buys her lunch from the cafeteria, although her reflux limits her choices.  Some days, she has speech therapy or physical therapy or occupational therapy. She takes a rest and then rides the bus to Ms. Kelly's house.

After school, Ellie plays with Louisa and takes a nap when she wants to.  Sometimes, she doesn't want to and she falls asleep on the floor.  She helps pick Charlotte up from school.  The girls play (or argue) until I pick Ellie up.

Ellie's favorite things to do after I pick her up are:
Play outside when there's no snow.
Visit the bookstore.
Play with her Legos, dollhouse, or dress up toys.
Watch Frozen eight million times.
Help with dinner.
Eat ice cream.

At dinner, Ellie prays and then gobbles up her food.  She sits at the table with Matt and I with a fair amount of patience for a three year old.  We give her a bath after dinner.  She goes to bed.

That's her normal, and ours, five days a week.  On weekends, we go to church and gymnastics and birthday parties and do other things-you-do-when-you-have-a-kid.

***

So what can you do for World Down Syndrome Day, especially if you don't happen to have a child with Down syndrome handy with whom to celebrate?

Reach out: Who with a disability is lonely around you?  Who needs a pick me up?  Not all disabilities are physically apparent, like Down syndrome.  I promise, you know a family who has a kid with autism.  Ask the parents how they're doing.  Listen.  Call them for a play date.  Sit by them at church.  Invite them to the park.

Learn: There's a lot Ellie can do.  There's a lot she can do with just a bit of help.  The same goes for adults with Down syndrome.  Learn.  Check out www.downsyndromepregnancy.org as a fantastic resource about people who share Ellie's extra chromosome.

Spread some love: Be kind.  Be positive.  Ask people not to explicitly or implicitly mock those who are different.  Volunteer for Special Olympics.


Thanks for walking this road with us.

Also in this series:
FAQ
Ellie Tells All
My Life Raising a Child with Down Syndrome


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2 comments:

  1. Only girl in her class! I bet she shows those boys up. :)

    ReplyDelete
  2. I love watching Ellie grow! This post reminded me I need to get the flashcards back in our routine with Gellibean. Happy World Down Syndrome Day!

    ReplyDelete

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