Monday, February 9, 2015

Our Journey in Including Colin

The formation of this post has really been a long time coming but it has been extremely difficult for me to find the words to express adequately how I have been feeling.  In all honesty, I have been really struggling emotionally because what Chris and I believe in and think is best for Colin is faced with so many challenges. 

When Colin was born and we were faced with his diagnosis of Down Syndrome, Chris and I struggled with what felt like a loss; a loss of a "typical" child, a loss because of what we thought he wouldn't be able to do, a loss of a "normal" future, and because now we felt like we were no longer "normal" parents.  However, we held Colin and despite our fears, fell hopelessly in love with our little boy.  Although we had to do things "normal" parents typically didn't do like welcome therapists into our home, schedule endless specialist appointments, and wait longer for milestones that happened easily with other babies, we still just saw our baby and believed in him. 

For us, life WAS normal.  Colin attended sporting events, restaurants, family parties, was never put down when we were with friends, went on vacations, sat on Santa's lap, attended a normal daycare, took swim lessons, spent summers on the beach, made new friends, attended birthday parties, rode on the train to the city, learned how to ride a bike, joined a soccer team, rode the carousel on the boardwalk, swam in the ocean and countless other things that "normal" people did.  He was easy going and happy, strong and determined, and in many ways, just a typical little boy. There was no holding Colin back; we included him just as we would any other child of ours. 
When the planning for preschool started, so did the discussions at home as to where we saw Colin in the future.  It was no longer a future that scared us, but rather, one with so much hope and potential.  We saw preschool as a time to prepare him for the years of schooling that would follow, so we embraced the special education program that worked to improve upon skills that came more naturally to other children.  However, through all of our meetings and discussions, we shared our ambitions to fully include him once he got to Kindergarten.  Despite feeling so strongly about an inclusive education for Colin, we still spent years researching the topic to ensure we were making the right decision.  The research supported how we felt. 
Despite a lot of resistance from the school district about the decision we were making, Colin was placed in an inclusive setting in his home school.  Chris and I were excited at what Colin could gain from this setting and had so much hope.  It has been no secret that this year has been so much more challenging than we could have ever imagined.  We quickly learned that including Colin was not as simple as two parties "agreeing" on the same placement.  This year has brought with it so much stress and anxiety as we have encountered behaviors and challenges along the way.
There has never been a topic in my entire life that has taken up so much of my thoughts and feelings as this inclusion topic has.  I struggle with what I feel so strongly about is best for my child and with the way others make me feel for choosing this route for Colin.  I often feel very lonely as we walk this path despite the support and love from family and friends because no one can make the hard decisions that we need to do for us, no one can solve the problems and challenges we are facing, and no one can really make things better for us.  Despite how much people love Colin, no one wants what's best for him more than his Mommy and Daddy do.  It's a challenging road to walk, especially when it's not done very often in our district or among many people that surround us.  Even with all of the opportunities out there to gain perspective on others' journey's, no two are exactly the same. 
Things finally got to a point where Chris and I had to seek out help we were not anticipating we would need to use.  There have been times I have sat back and really thought about whether I still believed this placement was the best one for him.  I have made my lists of the pros and cons, I have thought about what it would be like to "just give up on" inclusion and put him in a self contained special education class, and I still arrive at the same conclusion each time.  If I believe that Colin can be fully included in life, and have raised him that way, then I stand firm in my belief that he can be educated alongside his peers just the same.  In fact, I actually feel uncomfortable with the idea of giving up and feel that I would be making the wrong decision. I don't believe that a self contained setting is wrong for everyone; I believe that it is not the right setting for Colin. 

It makes me feel sad at times to know that many things are hard for Colin, right down to socializing with his peers.  He has to learn everything. Even though making and playing with friends, having a conversation, knowing how to behave, acquiring academic skills, physically doing things, writing, eating, etc. are hard for him, it does not mean he can't learn these things in the same place everyone else is learning.  The key here is finding the supports that he needs in order to be able to do this successfully.  This takes a lot of work from all sides of the table that sits down together to find what's best for him. 

Chris and I are going to continue to fight for and push for what we truly believe in for Colin.  We believe in him and know that anything is possible.  However, this will probably not come without many tears and struggles because that belief is not viewed the same by all. 

In preparing for an inclusive education for Colin, I read a book written by Sandra Assimotos McElwee that chronicled her son's journey from preschool to his high school graduation called Who's the Slow Learner.  It was such an insightful book as it detailed each year of her son Sean's education and the challenges that she faced.  It's interesting to me to find how many similarities our current journey contains compared to hers with a difference of at least 15 years in between when her son attended Kindergarten and Colin now.  I have enjoyed following her on facebook and through her website, Who's the Slow Learner.  Just today, as I was getting ready to attempt this post, she shared the following...

...and I couldn't have said it better myself. 

This is hard and emotional and more frustrating than I could ever have imagined.  However, we BELIEVE in Colin and so we will keep pushing and fighting for an educational setting that is same as the one in which his peers learn in and the one that we feel the benefits far outweigh any segregated setting.  It will just take some more planning and collaborating to find what he needs for that to happen successfully.  I know it can be done. 

1 comment:

Jenny said...

I don't even have words for this post Kelli...I was in tears reading this. A person can just feel the love you have for your son through your words. The pride you feel. How you want the very, very, best for him. This post was raw and beautiful.

I am so glad you are sharing this journey with us. I wish you guys didn't have to fight so hard for the education you want for Colin. I am praying the path gets easier for you.