Before Down Syndrome Awareness month started this year, I took some time to scroll back through some of my earliest posts. What always hits me is the very first post I ever wrote:
"My goal in creating this blog is to write about my thoughts and feelings as my husband and I begin our journey with our new son Colin and his diagnosis of Down Syndrome. To say that the news was not a shock would be a lie but as time has gone by, we have slowly begun to realize that this is our special mission in life. Colin has already begun teaching us and so many people around us what a strong and determined little boy he is...and I couldn't be more proud."
The post was written just one month after Colin was born and I can vividly remember sitting down at my computer, searching for an outlet to purge all of the things that I was feeling. I went on in the next post to talk about our "story" and how the diagnosis was one we were not expecting. We were extremely lucky because even though we felt incredibly emotional and devastated when the diagnosis was confirmed, we had family and friends who rallied behind us and supported us. We were even luckier because we had this little boy who we loved so much. We had had the opportunity to hold him in our arms and meet our baby first, before all of the information started to be given to us. Despite whatever fears and anxieties we had, it was easy to love Colin and just be a family and that's what we started to share with everyone through the blog. As Colin was checking in with new doctors and therapists, we also started to share that as well and pretty soon, the blog just took off.
When people are facing the beginning of their journey the way Chris and I once were, I hope that if they stumble upon our blog the first thing that they see is a little boy with the biggest smile in a family that loves him immensely. If they keep reading and take the time to look around, I hope they see that we are actually a pretty normal family who does fun things but also has challenging days (especially now that we have grown to be a family of 5!) like a lot of families do. If they start following our blog they will see that we do have days where Down Syndrome is a topic that is discussed and it might highlight some medical issues, behavior issues, or more recently, challenges in school.
A few weeks ago, Colin got on the bus on his first day of Kindergarten all by himself after we had decided to place him in a typical Kindergarten setting. There was much opposition by our school district to place him there because where we are, students with disabilities are commonly placed in special education classes. Chris and I wholeheartedly chose this placement because over the past 5 years that we have spent raising Colin, we have treated him as we would any other child.
After spending many months doing a lot of research on inclusion, Chris and I made an informed decision to put Colin in the classroom we thought he would thrive the most. We knew when we made this decision that there would certainly be challenges to this, but we were willing to do what it took to make it work. We made the decision that we did because the benefits to being among his typical peers in a typical setting far outweigh any of the cons.
Chris and I believe that Colin should be a valued and contributing member of society and to do that, he must be one now. We believe in Colin's place in this world, in his community, in his Kindergarten class, and most especially, in our family. We will continue to fight for what we feel Colin deserves. He is after all, just a little boy who happens to have Down Syndrome.
I will admit that while we are 100% confident in our decision for where we believe Colin belongs, it does not mean that we don't spend time worrying about the mounting challenges. The anxieties that I feel today, and every day, often feel very heavy because there are lots of things to sort out. Every night that I lay my little boy down I say a prayer that we will figure out this unchartered road so that he can be as successful as he is capable of being. I worry that even though we see his potential, others will not see it and I worry about him being accepted for who he is. Tomorrow we have a meeting to discuss his progress so far and to hopefully brainstorm as a team strategies that will allow him to do just that.
- Henry Van Dyke