Sunday, April 22, 2012

Inner Battles

While having a conversation with another parent of a child with Down syndrome they said “we are very proud that our son has Down syndrome.  Our daughter introduces him as ‘my little brother and he has Down Syndrome’”. 

The battle that I find myself fighting is where I stand in this thought process. I am in no way saying that these parents are wrong or anything of the sort.  It just causes a question in my mind. 

 I am very proud of Lorelei and am in no way ashamed of her having down syndrome.  However, I never feel that I want to introduce her as this.  To me she is not a “Down’s kid” nor does it define her.  She is just another kid.  She will learn and play along with everyone else.  She may end up being a little slower to do so but that’s nothing new.  Children progress at such varied rates anyways.  She already can stand, cruise along the couch, sign “more”, “dog”, and “all done”.  I am a proud parent … correction … we are very proud parents of a child with Down syndrome. 

This leads me into another debate that I am having with myself and I discussed this with Maria a few weeks ago.  It was really brought to my attention after another conversation I was having with a parent of a child with Down syndrome.  He informed me that in school systems in VA, siblings of children with disabilities are labeled as “high risk”.  For those of you that don’t know this means that they are likely to fall behind academically and socially.  It makes me almost feel bad having a shirt or sticker that says “proud dad of a child with down syndrome”.  The struggle isn’t because I have a disagreement with this statement. On the total opposite end of the discussion I am very proud of Lorelei.  The struggle arises when I think about Mikaela.  I never want her to feel that I am supportive of Lorelei and not her.  I want to be sure to show that I love both of them, am proud of both of them, and am in full support of both of them.  I want a shirt that says “proud dad of two amazing daughters” with the Down syndrome ribbon in the background or something along those lines. 

Some victories to tell you about:
I have begun a campaign at the high school I work for to create a few “Unified” sports programs.  It appears that we will be beginning a Unified Bowling team at the high school.  It will be a varsity sport pairing an athlete with intellectual disabilities along with an athlete from the general population.  We are the first high school in this entire part of VA to try a program like this.  The whole point is to get these kids working together and to allow the students that are usually in a self-contained classroom to get out and interact and show off their abilities to students that they normally couldn’t work with.  I’m really excited and am hoping to have a winter indoor bocce-ball team and a spring track and field team.  We’ll see how it turns out.

I am also working to have a disabilities awareness week where students can take the pledge to not use the word “retard” anymore.  I hope to also have a few speakers and show some informational videos.  I chose October because as you all know it’s National Down Syndrome Awareness Month.  The week would begin with the Buddy Walk in Washington DC on the 20th.  Then do the week of speakers and videos and finish the week on Friday the 26th with a benefit football game to raise money for the local workshop that helps find and provide jobs for people with disabilities.  I’m really hoping that this works out.


  1. That's interesting about siblings being labeled high risk. That's the first I am hearing about that... I might have to do some research. It's funny because thinking about all the kids/teens I know that have a sibling with a disability, I can only think of one or two who aren't actually advanced students! Most of the sibs I know are intellectually and socially gifted compared to their peers, and I think a lot of that has to do with how their parents raise them (which is true of any kid). Most I know are kind, trustworthy, and steadfast in their character because of the special circumstances surrounding their families. I know without a doubt Mikaela will be in that category!

  2. first of all, who gives a crap about what other people might say or do. be the best you can be and the people who matter to you will notice.
    one of my best friends growing up, dwayne affecionately known as"porky", had a severe speech impediment and was considered mentally handicaped. we spent everyday together for years, and he inspired all the time. he couldn't read but there wasn't anything he couldn't figure out. one of the hardest workers i have ever known and loved by many.
    moral to the story, your program for mixing kids is a great thing and always give thanks for what you have and know things could be alot worse.
    with the love those girls are going to get in their life, they will be just fine