Down Syndrome Awareness — Lessons In Advocating For My Children With Special Needs

We learn so much in school from our friends as much as our teachers. So much more than just academics.  Meeting up with my old high school chums again afforded me a few new observations pertaining to advocacy: 

Advocacy Lesson #1:  A few of my friends called yesterday, after reading my post, asking if they were the ones who slipped up using the R word. They were NOT the ones… But Holy Cow I’m touched and impressed by the fact that you cared enough to call and apologize just in case it was you! Interestingly, the actual folks who spoke the dreaded R word to me did not comment, send a message or call!  Perhaps they didn’t see themselves in the story, were embarrassed, insulted OR, since I recognize that my blog’s not the daily news, I guess it’s possible they missed my post (though so many of my classmates were on FB looking for pics of the event).

Suffice it to say that this was a most interesting advocacy lesson for me and I wanted to share it with you all.  Though I believe my post reached a few more people (other than the culprits), making them think about their choice of words and how they might have offended the likes of me (NOT an easy thing to do as I’m SO not easily offended!  And, in truth, I was less offended than surprised when I heard the R word used!)  The thing is, it appears I failed to reach those who actually used the R word.  That, in itself, is catalyst enough for me to make sure that, in the future, correcting the gaff in real time is key to stopping the use of this derogatory word that fills the hearts of so many parents of children with cognitive disabilities with dread.

Advocacy Lesson #2:  It was so nice not to have to explain myself and the gory details of my life to every other person I met [again] after 30 years.  Sometimes I get tired of hearing the gasps and the “I’m so sorry” comments that often come along with letting people know that My Boys have Down syndrome.  Once I get that reaction I HAVE to go into advocacy mode and explain… It is NOTHING to be sorry about.  I’m NOT!  I love the living daylights out of My Boys and my daughter just exactly the way they are.  I’m a better person for having these beautiful children in my life.  And, hopefully, when I’m gone, I’ll have made a difference in educating a few people about what it really means to love and live in this world with someone who has Down syndrome.  Yes, when the conversation turns naturally to it, I openly discuss the fact that My Boys have Down syndrome.  No, I never hide it.  Why would I want to hide anything about my absolutely amazing little boys?  I take every opportunity to advocate for my children, exposing others to the real face of Down syndrome versus some blatantly incorrect and outdated text book version they might have learned years ago.  I can’t help myself.  THIS is my life. This is THEIR life! Advocating makes it better for everyone.  So when the conversation turns to it, I willingly step up on the soap box. 

Still, sometimes, it’s just nice to be Maggie.  And, thanks to Facebook, so many of my classmates already know about my beautiful children and my grateful attitude about having them in my life. As such, it was nice to just be me and leave my soap box at home for a night.  Even us parent-advocates deserve a night off once in awhile!

Advocacy Lesson #3:  I am a parent.  I do what I do because my children need me to do it. It’s that simple! I really do appreciate all the compliments about my efforts on behalf of my kids…  And about how amazing My Boys are.  They are, aren’t they!  (You should meet them in person!) But, the truth is — and every one of us who have children with Down syndrome know this but those of you who don’t might not — I am doing just exactly what every other parent does… Which is everything and anything that my children need me to do to pave a peaceful path for them in this world.  Is that not so?  When someone says, “I don’t know how you do it!” my answer is always the same, “Ya do what ya gotta do!”  I believe that those of us with kids are parents first and foremost.  Your kid is shy so you plan more play dates for him.  Her kid isn’t good with animals so she watches him like a hawk when they encounter anothers’ pet.  Their kid struggles with math so they find her a tutor.  The neighbor’s kid has a peanut allergy so their epi-pen is ever at the ready.  My kids have Down syndrome so I get them the help they need.  It’s only a big deal if you make it so.  I don’t!  You see, my kids are JUST like yours with their own little idiosyncrasies that I try to address any and every way I can.  I am a parent!

__________

Yeah, it’s a funny little life fraught with minor details that make us all different and great big similarities that make us all the same.  We’re all in it together and doing it the best way we know how.  Each in our own unique way.  To all you parents who advocate for your children with special needs, keep up the good work.  To all you parents who don’t have children with special needs, know that the rest of us are just like you.  Our kids are just like yours.  Our lives progress one day at a time with the sun rising in the east and setting in the west.  We all worry about our kids, their health, their education and their future no matter who they are or how many chromosomes they have.

P.S.  Thanks, my friends, for all the compliments on how I’m handling my journey.  I really do appreciate your recognition as it absolutely does help to keep me going when the going gets tough… As it does every once in awhile for all of us (special needs aside).  That said, my hat is off to you and your parenting skills and style too.  Every parent I encounter has something to offer that helps me as I travel my path.  God knows it’s not always easy no matter which children you’ve been gifted… but it is always worth it!  We’ve all heard the saying, “there’s a hundred ways to skin a cat” (if that’s your thing).  Well, there are even more ways to raise a child!  I recently heard that, in child rearing, you only need to get 40% right to raise a reasonably well-adjusted child…

The trick is figuring out which 40%! (LOL)  Good luck and enjoy your journey!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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One Response to Down Syndrome Awareness — Lessons In Advocating For My Children With Special Needs

  1. Kimberly says:

    I've had to advocate for my oldest son, who has ADD, and for my middle child who is "gifted". One needs help because he has issues that make it hard for him to learn and the other needs help because she has issues that make it very easy for her to learn. They both have their strengths and weaknesses (My son potty trained at 3 with no problems and my nearly 5 year old intellectually advanced little lady has only been out of diapers for three months!) and they both need me on their side to know them and love them and get them what they need. And my three year old? So far she just needs me to let her daddy know it's okay for her to wear the same outfit every single day! Thanks for your posts, they are definitely inspiring.

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