Sunday, September 23, 2012

Down Syndrome and Friendship: Part 1

Growing up, I had red curly hair.  I was exceptionally skinny (yes, I know  What happened?).  I also developed boobs before all of my female classmates.  I was teased.  By boys and by girls.  And I cried. Privately.  Did I mentioned that this was in elementary school?  Those few close friends that I did have in school are still my friends.  In fact, one I speak with almost daily.

Children fear what they do not know or what they do not understand.  Many times that fear is manifested by making fun of the person who is different.

My daughter is different.  She has slanted eyes and a large gap between her first and second toes.  She screams rather than make words.  She is prone to frequent spitting up due to reflux.  She always has something in her mouth whether it be a blankie, a chewy, or a shoe.  She believes that crayons are their own food group.  She uses her hands to communicate.  If a child is crying, she immediately starts signing "sorry" and starts to cry too.  My daughter has Down syndrome, sensory processing disorder, and a tentative diagnosis of attention deficit hyperactivity disorder.  This makes her different, special.

I believe that people are innately good.  As parents, it is our duty to educate our children and to instill them with good, decent morals and values.  Yes, this does indeed go back to the "treat people the way you want to be treated" rule and it starts when our children are infants.  You lead by example and your children will follow.

Friendships and sharing start young!

When Ellie was 3 months-old, I took over as the playgroup leader for the 2009 babies of the North Austin Mom's Club.  I was still a brand new member and a brand new mom making my way through tumultuous hormones and the grieving process of having a child with a disability.  Part of my role as the playgroup leader was to meet the potential new members and inform them of where the playgroup was meeting that week.  I would often say "I am the one with the curly hair and glasses.  My daughter has straight blond hair and blue eyes."  I never once said "Oh my daughter is the one with Down syndrome" even though it would have made us much easier to find in a busy park or playscape.

Yes, I purposefully hid the fact that my daughter sported an extra chromosome.   I didn't want my daughter judged sight-unseen.  I wanted them to show up at playgroup and see that my daughter was/is "just like everyone else" and should be accepted and treated as such.  Also, a part of me didn't want them to run away out of fear due to preconceived notions.  If I didn't make a big deal out of her designer genes, then perhaps they wouldn't make a big deal either.

It never mattered.  From our first ever playdate (Ellie was two weeks old) and as our group steadily grew, these woman fully embraced Ellie as a member of their "village".  They cheered when Ellie learned to sit up, to crawl, and to walk even though their own children accomplished those milestones months before her.  Their children play along side of Ellie.  Some of the kiddos try to interpret Ellie's signs.  "Ellie Bear wants more crackers!" We attend each others' birthday parties.  Many have participated in past Buddy Walks.  We are accepted.  She is accepted.  She is loved.

The children are now older enough that they are starting to notice that Ellie has some quirks.  The children may be out at the mall and see an item the resembles Ellie's chewy tube and say "Oh Ellie Bear has one of those!".  Or they may ask "Mommy, why did Ellie Bear put my shoes in her mouth?" or "Why is Ellie Bear still in a diaper?"  Honest, curious questions that only require honest, simple answers.  Their mothers, my friends, do not make a big deal out of it and provide simple answers.  Ellie's playgroup buddies continue to play with her and embrace her because their parents have demonstrated acceptance.  They have demonstrated, through their actions that Ellie is just another little girl who wants to play.

I know that it may not always be this way.  I know that as children grow older and the opinions of peers hold greater importance, things may change.  However, for now, I am fostering these early friendships.  I am hoping that as our children continue to grow, they will take these life lessons with them and continue to recognize that all of us are "more alike that different".

Photo: Music Therapy Services of Austin

*It has taken me well over a month to write this post as a few events have transpired and my feelings are a bit conflicting.  Therefore, this has become a multi-part series.*
**I am forever thankful to my friends of the NAMC.  They have been with me through some dark times and with many celebrations.  If you are in or near Austin, please visit their website and consider joining in all the fun!  This post is not sponsored by NAMC and I do not receive any membership discounts as a result of this post.*

1 comment:

  1. I love to hear that you have such a great group of friends that have embraced Ellie!! As Madi is starting to get older, I am starting to wonder more and more about her future and who her friends are going to be. Whether "typical" kids will accept her or not.

    Can't wait to read Part 2 of your series..... :)


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