World Down Syndrome Day

Happy World Down Syndrome Day!  Today we celebrate the lives of those with Down Syndrome.  Why today?  We celebrate today because Down Syndrome occurs when there is an extra copy (three) of the 21st chromosome, hence 3-21. Pretty cool, huh!  It’s kinda crazy the uproar that one little extra chromosome can bring.  Like that one extra chromosome some how makes a life not worthy?  It’s true, there are still people in this world that don’t believe that people with Down Syndrome’s lives matter.  In fact, in the US, the termination rate for those mothers who get a confirmed diagnosis of Down Syndrome is about 75%.  That’s a lot of babies not even given a chance, all because of one tiny chromosome.

 

Why we celebrate WDSD

Those alarming statistics are exactly why we still have to continue to celebrate this day.  It’s unfortunate really, that we even have to have a day like this.  The truth is, I’d like nothing more for my child to be treated like any other child and not need a day that is just about them.  But the reality is, is that there is still so much work that needs to be done.  We celebrate this day to bring awareness to Down Syndrome and to educate and advocate for our children and adults with Down Syndrome.  We have to celebrate this day so that my child can grow up in a world that accepts her differences and her challenges and loves her anyway.  Celebrating this day is about showing the world that people with Down Syndrome are much more like the rest of us than they are different.  It’s also showing the world that our differences are what makes us each unique and wonderfully made.

Is raising a child with Down Syndrome Challenging?

I’d be lying if I said that raising Stella doesn’t come with challenges. It’s hard having a child that is non-verbal.  Stella has the same needs and wants as other kids her age but she has a much harder time communicating that to us.  Imagine that for a minute!  What if you were sick, had a headache, were hungry, sleepy, scared, just wanted to go home, etc but you couldn’t tell anyone.  How would you react?  Cry, Yell, get angry, kick, scream, run, lie down… That’s hard on all of us.

But when I really sit back and think about the challenges that I go through with Stella, it is much more about other people.  It’s about the expectations or lack of expectations that others put on her.  I’ve gotten use to the stares and random snide comments made by other kiddos or even adults, for the most part.  Currently I’m finding the pre-judgment based simply on her diagnosis a little hard to swallow.  The fact that people still think that she needs to be segregated from her peers, in school and extra curricular activities is like a punch in the gut.

Here’s the hard truth, Stella and all kids, for that matter,  will only live up to the expectations that you/society places on them.  If you put my six year old in a dance class with 3 year olds because she can’t quite keep up with the other six year old, guess what she will do?  Yep, she will act like and do what a 3 year old does.  But if you place her in a class with other 6 year olds, she will at the very least, try to keep up with them and do what they are doing.  And if she isn’t doing exactly what the other 6 year olds are doing, why the hell does it matter?!  Why should we expect all kids to learn and act in the same manner? Learn to teach to the individual child!

Advocate like a mother

Being an advocate for Stella is the most challenging part of raising a child with Down Syndrome.  It is mentally, emotionally and physically draining to have to constantly prove my child’s worth to others.  I’ve realized over the last 6 and a half years how much I truly took for granted raising my “typically developing” boys.  Side note: I hate those words “typically developing!” What the hell is typically developing anyway!  We are all different! Anyway, I digress.  You do take things for granted, like getting to choose what school your child will go to, which soccer team they will be on, who will hire them when they get older…

What I want is for all people to see Stella’s value.  I want people to presume competence.  My wish is that we didn’t have to have a special day (other than her birthday) to celebrate her.  Instead, I wish that she was seen and accepted like any other child.  What I would love is to not have to fight and advocate for her to receive the same education that her brothers were able to get so easily.

Stella is loved and accepted by so many.  We are beyond blessed!  But there is still work to be done!  So, instead of getting angry, I’m just going to keep on educating, spreading awareness and advocating for her.  I will push through the tears and heart break and show the world what she is capable of when treated with respect and presumed competence.

Changing the Face of Beauty

CTFO
Stella is – Changing the Face of Beauty

My daughter, who happens to have an extra chromosome, was recently a part of a campaign called Changing the Face of Beauty.  Their mission is get companies to use people of all abilities in advertising to help bring awareness and acceptance for all people.  What a beautiful concept, right?!  I’ve been wanting to blog about this since that day she participated in the photo shoot but hadn’t made the time.  But today, something happened at my daughter’s school that broke my heart a little so I figure, it’s the perfect time.

This may seem a little off subject, considering this is a health and fitness page, but don’t worry I will tie it all together!

“Oh no, Not HER again!”

Yep, those were the words out of a little 4 year old boy’s mouth when I walked my daughter into her classroom today.  As I mentioned, my daughter, 31/2, has Down Syndrome, which gets us looks from other adults as well as children.  But this is the first time anyone has said something so negative toward her.  She is a sweet, loving, shy little girl who would not hurt a fly.  Today was her 3rd day of preschool, a new school and she still has a hard time being around other children her age but she is enjoying being there.  She is not violent, or mean in any way.  She is also non-verbal, speaks only in sign language right now.  I have no idea what would make this little boy not want her in the classroom.  Is it because she looks different?  Maybe, it’s because she walks differently than the other 3 year olds? Because it takes her longer to learn things?  Is it because she has a hard time sitting still?  Does her flapping her arms when she gets really excited bother him?

I don’t know what his reasons were but I can guess that he is not use to being around children who are “different” than him. THIS is why INCLUSION is so important!  THIS is why it is so important to get children of all abilities in the media and in advertising!  Children who are never exposed to children of different abilities grow into adults who do not know how to interact with people of different abilities.  And the cycle continues!

Where do we start?

It starts with the parents!  Children do not do what you say, children do what you DO!  Telling your child that he/she needs to be accepting and that they shouldn’t bully, does nothing if they are constantly hearing you make fun of others.  You think it’s okay for you to make a sarcastic comment about someone being overweight, your child hears you!  How do you think they are going to act when they encounter someone who looks “different” than them??  Why must we judge anyway??

Advertising/Media

Imagine taking your daughter to the American Girl store to pick out a doll that looks just like her.  But wait, there is no doll just like her!  Imagine your child going through the Christmas Toys r Us book, looking for just the right gift to ask Santa for.  “Mommy, why don’t any of these kids look like me?”  “Am I different?”

Now imagine dolls with all abilities in the American Girl store.  Imagine kids with all abilities in the Toys R Us ad.  Now, when your child sees my child out, he doesn’t look at her and think “why does she look different?” because it has become part of the norm.  When my child grows up in the same classroom as your “typical developing” child, she becomes the “norm.”  When we are able to include all children in the classroom, they become the “norm” and we start changing the face of beauty.

How does this tie in to health/fitness?

The reason that I love what I do, is making women feel good about themselves.  My mission is to help women find their confidence and shine, to ensure that women know, that it’s not about size, it’s about how you feel!  What I want is a place where women can support women and not feel that they are not good enough because of what the media tells them they should be.  What I want is to….

Change the Face of Beauty!

Beautiful
changing the face of beauty