Wednesday, March 19, 2014

Celebrating World Down Syndrome Day (3:21)

I've been thinking all week about what kind of post I wanted to do for World Down Syndrome Day, which is celebrated on March 21st in representation of the 3 copies of the 21st chromosome in those with Down Syndrome.  I was having trouble coming up with a direction until I actually uploaded these pictures with the intent to talk about some of our "daily battles" in having TWO toddlers, one of which has Down Syndrome.  

The more I thought about it, the more I realized that the message I wanted to send THIS March 21st was one of hope, determination, love, and inclusion in a community in which those living with disabilities are a VITAL part of the world in which they are growing up in.  Our "daily battles" show that our life is really quite normal. 
Yes, we DO have our challenges because of the fact that Colin has a disability but those challenges are the very same ones that we all work hard to overcome, with no one working harder than Colin himself.  While children born with Down Syndrome can often have various health problems because of that extra chromosome, we were fortunate to discover that Colin's medical history is actually quite good!  We have dabbled in some minor things here and there but overall, a lot of the challenges we have faced have been ones that we can handle with medications or interventions, including the feeding challenges we have been dealing with since Colin was born.  

However, Colin has been working hard for YEARS and we are slowly starting to see progress with the variety of foods in which Colin will eat.  For the longest time it was only cottage cheese with berries, yogurt, pudding and ice cream and we have now added in (depending on the day) string cheese, cut up strawberries, fruit snacks, pasta with sauce and just TODAY he ate chicken nuggets for lunch at school (he would only ever eat them for his feeding therapist)!  
Chris and I have been on the receiving end of many conversations in which fellow parents have made comments like "I don't how know you do it" in reference to raising a child with a disability and I have always had mixed feelings about it, particularly in how I wanted to respond.  When Colin was born, we were unsuspecting parents of the diagnosis with which Colin was bringing.  That was a scary time for Chris and I because we had no idea as to what the future would hold for all of us.  However, nothing could take away from the feelings we had immediately when holding our baby for the first time and that love continued to pour out of our hearts.  No matter how scared we were, we KNEW we were going to do whatever it took to make sure Colin was loved and had whatever he needed to  be the little boy we knew he could be.  Isn't that what all parents want for their children? 

Once Kailey joined our family (our typically developing child), I quickly realized that life will ALWAYS bring us challenges that we need to deal with regardless of the genetic makeup of those we love.  While we all can agree that sometimes there are challenges we face that are more significant than others, we all do what we can with what we have in the moments we are in.  Chris and I do what we do simply because we love Colin.  

Now that we are turning a developmental corner in our journey with Colin, we have realized more than ever how important it is to show through all of our actions that those with disabilities should be included in their society the same as everyone.  We are attempting to figure out the best plan for Colin's academic future and no matter which way we look at it, we always come back to the thought that while he may have challenges and "differences", he is still more alike than different and belongs with his typically developing peers.  

We raise BOTH of our children so that one day, they will be independent adults heading out into a world in which they have a job, work hard at what they do, have a family, a home, and a life in the community in which they choose to live.  Our job is to give them the skills so that they BOTH may be able to do this.  The only difference lies in the ways in which we present those skills to them because of the unique differences in their learning styles.  

Would you like to know what life is like in a family of 4 with two toddlers, one of which as Down Syndrome?  

It's really quite great!  We love to laugh and have fun....

We have days that are really challenging because no one wants to listen and there are timeouts and battles...

We work hard on what we need to but make sure we have fun doing it...

We LOVE with all that we have.  

When encountering those with disabilities, please remember that they are people just like you and I and they have feelings which can be hurt. It might be hard to have a conversation or communicate in the ways you are used to but I promise you that it's worth the effort to communicate in the universal ways that we all know how...a smile goes a really long way. 

While World Down Syndrome Day is a day to bring awareness to those with Down Syndrome, it's also a day to highlight the fact that WE ALL have differences and those differences should not define who we are or how we are viewed in society.  

Colin may have a disability but we view him just like we would any other little boy; we view him knowing he has the potential to be something pretty great in his life.  

...and that's the exact same way we look at Kailey.  

On this World Down Syndrome Day we ask that you see the potential in EVERYONE...


jamiekjohnson10 said...

I just think you are the greatest! ! So beautifully written and so perfect for all children and adults. Makes so much sense

Jenny said...

Loved this :)