Sunday, October 23, 2016

Down Syndrome Awareness Month: Does Josie Notice That She's Different?

Greetings, Readers!  Long time, no see!  It's good to be back.  October is Down Syndrome Awareness Month.  We recently received a question on our Instagram feed @CatfishWithKetchup, so in honor of Down Syndrome Awareness Month, we'll go ahead and answer it right here on the blog.  If more questions roll in, we can do a Down Syndrome Awareness Month Q and A (for some reason, Blogger does not like ampersands) series.  How does that sound?  Good!  Let's get down to it:

QUESTION: Does Josie notice that she's different from her sisters?  Does she get sad when she sees things that they can easily do that she cannot do?  
 Josie was only sixteen months old when Merryn came along and Travis and I excitedly thought that Merryn would offer just the encouragement that Josie needed to keep striving for her milestones.  I mean, what better source of inspiration that a peer (sibling) role model, right?  When Merryn started pulling up to a stand, we assumed that Josie would soon follow suit.  Alas, the opposite occurred and Merryn initiated her journey into becoming Josie's ultimate enabler by standing up and handing toys down to Josie, allowing Josie to remain seated comfortably on her rear end.
When Josie's physical therapist brought over a gait trainer to encourage Josie to learn to walk, Josie was NOT happy.  We would plunk her in that thing and she would remain stationary while whining and fussing in opposition.  Cue baby sister who quickly came along and became the motor, latching on to the back of the walking device and propelling Josie forward.
So instead of looking to her sister with envy - or even a competitive spirit - over her abilities, Josie honed her con artist skills and happily allowed her sister to anticipate her needs and offer assistance.  That dynamic has not changed much to this day.  Although, Josie still exerts stubborn opposition, she has her moments where she's less likely to welcome help.  It's not for the sake of prideful independence; it's just because she has no desire to complete the task at hand - assisted or otherwise.
 Speaking from my own experience of growing up with a sister with Down syndrome, I never detected a sense of envy from her.  I went to college, got married, and had children - things she did not do - but she was genuinely happy for me and celebratory along each step of my journey.  

The wonderful quality that Leanne and Josie both seem to posses is a general contentment with their life.  Neither one appears to be measuring themselves against others.  They each seem to possess an admirable degree of self confidence and inner peace.
 But, I believe that quality is a double edged sword.  On one hand, how wonderful would it be to not measure yourself against others?  How peaceful to not worry about what others' think of you?  How content would you feel to march to the beat of your own drum without any concern about public perception or social ostracization?  

However, ask any mom of a child who has thrown herself face-down on the dirty floor of a public place in front of tons of people, refusing to budge despite said mom's embarrassed pleas, and you'll see it's not always a wonderful quality.  Been there!  Ask me how hard it is to motivate Josie to get dressed in the morning when she could give a flying flip whether she attends school in her pajamas or an adorably accessorized Gymboree ensemble.
 The point is, that while being driven by concern over what others are thinking and doing to dictate one's behavior can turn into a defeating rat race of superficial attempts to "keep up with the Joneses," tuning into social cues can be helpful in motivating appropriate behavior and a healthy desire to achieve.
 It's a balance we all must learn to achieve for our own satisfaction and betterment.  I know that maturity has helped Leanne learn to observe and model more socially appropriate behavior than what Josie currently demonstrates.  But I loved growing up with Leanne because her lack of concern over what others thought of her inspired me to be more comfortable in my own skin.  I learned to avoid seeking out affirmation from peers based on shallow criteria; instead I sought friends who would accept and appreciate me for who I am.  I hope my daughters learn from one another in the same way.
 And for those who were born with cognitive and/or physical limitations who have a sense of envy over what siblings or peers are doing, you are not alone.  We are ALL born with a finite range of abilities.  There will always be someone else who is smarter, more athletic, more attractive, more get the idea.

There is a balance between me dedicating myself to practicing and improving my basketball skills and me realizing and accepting that I will never be LeBron James.  I am a thirty *ahem* something year-old mother of three.  I am not going to the NBA.  But, I can get in better physical shape.  I am a moderately intelligent woman with a business degree.  I can pursue a rewarding career that utilizes my talents and strengths.

My sister, Leanne, will never sing like Mariah Carey.  She will never win a Grammy.  But she's thrilled to carry her karaoke machine out to the front porch and serenade the neighborhood for the sheer fun of it!

I don't know what Josie or any of my girls will become.  But I know they will each utilize their own strengths to follow their own paths to a rewarding future.  And I hope that they will embrace the idea that there is more than one path to a happy and fulfilling life and that the diversity of the human condition should be embraced and celebrated.
This post calls to mind another similar post that contains such powerful statistics that it has its own tab at the top of the blog.  To quote Levar Burton on Reading Rainbow (I'm totally dating myself here), "You don't have to take my word for it..."

1 comment:

  1. I loved reading this. I'm a little farther along this road than you are but I can relate, although from a little different perspective. I also have 3 girls, my oldest Beth has Down Syndrome and she was 2 when my middle daughter Sharaya was born. My youngest Diana came along 4 years later. My husband and I also wondered if Sharaya's development would cause Beth to try to 'keep up' but nope. Not really. Beth was content to learn at her own pace and as long as she was with Sharaya, she was happy. Beth just turned 32 and is completely content with her life exactly the way it is!