An Open Letter…

I haven’t blogged in a while. Life has been busy, in this stage of life Down syndrome often takes the back burner to the “normalcy” of life (whatever that means!!), and raising four little boys and running a thriving small business hasn’t left me with much time left over.  It is my heart, however, to continue to grow as an advocate, and it is with this in mind that I could not keep silent regarding our experience as of late.

As a little byte of context, I had emailed this organization back in February to inquire about both of my older kiddos enrolling in their tee ball program. I did mention in the email that Jake has a diagnosis of Down syndrome, but I mentioned it not as a question as to his eligibility to attend the program, but more as a point of opening discussion about how to best help him thrive in the program. They responded to me by telling me that they have not had great experiences in the past with children with disabilities, and that I should pursue another program for him, a response which completely took me by surprise.

I wrote them a letter back, explaining my position and identifying why I was so disappointed in their decision, and they have not contacted me. I am sharing the letter I wrote to them, with the hope that as a society we can start holding organizations accountable to more. To equal opportunity. To pursuing inclusive environments. To the ideology that every child is valuable and important.  For I believe we would all agree that Jake deserves so much more.

 

To the organizers of Centennial Little League,

As I sit here and write this, even a month after receiving your email regarding my son’s participation in your T-Ball program, I continue to be profoundly disappointed in your interaction with me. I will not be registering any of my four children in Centennial Little League, but I felt it important to share with you my thoughts on this experience. Perhaps your life has not been touched by disability in the same way that ours has, and so I do not want to assume that you would think through things in the same manner as we do.

First off, I wanted to share with you our vision for our son, and the lens through which we try and make the best decisions possible for him.

You should know that as parents of a child with a disability growing up in this generation, we are seeking to provide our child with the most inclusive lifestyle possible. Jake is a vivacious, fun-loving, energetic 5-year old with an amazing personality and the ability to draw people to himself. He is fully included, with supports, in a mainstream Kindergarten class in our local school. He plays soccer in our community soccer club, and they have been phenomenal at adjusting to suit his level when need be, but have also understood the importance of community sports and relationships. He has been enrolled in the past in gymnastics, in swimming, in summer camps, and the list goes on. All of these activities listed have been in the community, alongside his brothers or friends, and in the context of other typical children his age.

We firmly believe, and all the research done would back up our stance, that the inclusion of children with disabilities in community settings not only benefits the child with the disability, but also provides numerous benefits for all of the children with whom the child interacts. Lessons on acceptance, respect, diversity, kindness, friendship, and celebrating differences are crucial, and to promote these life lessons in everyday encounters is vital to the health and wellness of every child, typical or not.  I am trying to raise my children to understand and recognize that we treat all people as equal, regardless of race, gender, or disability; and that to do otherwise is discrimination, and is not acceptable in any way, shape, or form.

It is with this ideology in mind that you can imagine my discouragement when I received your email and realized that you would not be willing to register my child for your program. We are disappointed in your decision, and in your organization’s position on my son, and by proxy, other children with disabilities.

Whatever the reasoning was behind your decision, you need to know that it is very disconcerting. I am quite certain, especially after reading the by-laws of your organization, that you would not discourage entrance into your program based on gender or race. It confuses me, then, that you would deny my child the opportunity to play in your organization based on disability. And on top of that, that it would be a decision that you made without having ever met, talked to, or interacted with my child.

I also wanted to point out some key phrases from your very own Centennial Little League by-laws for your consideration.

Under the description of the T-Ball program, it states the following as the goals of the program: “Young players are introduced to the game of baseball. They learn, develop and practice fundamental baseball skills at an early age to receive maximum enjoyment from the experience. Emphasis is placed on participation and enjoying their first baseball experience.”  Your Vision Statement states that: “Centennial Little League is devoted to providing opportunities for boys and girls alike by establishing an ongoing foundation of support for all athletes to reach their full potential”.  Your eligibility section states that: “Any person sincerely interested in active participation in the league may apply to become a member”.

All of these statements from your own by-laws make it seem like Centennial Little League would be an organization that would be committed to providing a great experience for my children. If my ultimate goal had been to provide an experience for my son where he was playing alongside other peers with disabilities, I would have looked into a different program to begin with. But to my husband and I, the ultimate goal was participation and enjoyment of sport, and the ability to do this in the context of being able to play alongside his siblings and friends.

I end this letter not as an angry parent, but rather as one who is trying to be the best advocate possible. I sincerely hope that this letter gives you pause, calls you to re-evaluate your decision as it pertains to many families hoping to foster a love for the game of baseball in their children, and causes you to rethink your stance regarding similar situations in the future.

Sincerely,

Karyn Slater

 

Blog Hop: The Injustice Of It All…

In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie. The point of said blog hop? To get bloggers, such as myself, to write posts specific to issues surrounding disability. To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form. Here are my thoughts for the sixth writing prompt, which is:

Vent: An Open Letter to Someone / Something That Pisses You Off

Dear Injustice,

You have some nerve, do you know that? You regularly get my “justice meter” all riled up, as I hear through the grapevine of this or that story in which you have once again reared your ugly head. You make me so angry I could spit. Every time I catch wind of your new exploits, I feel the need to vent, to be enraged, and to passionately express my disapproval at your very existence.

I wish I could obliterate you once and for all. I desperately desire to see you destroyed, annihilated, brought to ruin and destruction. You have, after all, accomplished the same thing for so many others, it would be deliciously appealing to watch you get a taste of your own medicine.

You know that I get fired up whenever I hear of your conquests, whether on an individual level, or on a larger scale such as the world stage. It doesn’t matter to me the form in which you present yourself, I find you detestable no matter the instance.

What really gets me though, is when you make it personal. When you decide to wile your way into my family, when you affect my children, and in particular my oldest son. When you present circumstances in which my son Jake has to live with injustice, inequality, and unfairness. When his little three-year-old life presents so many more challenges, so many more obstacles, and so much more opportunity for disrespect.

If it were up to me, you would cease to exist. If it were up to me, you would have no power to influence people into perpetuating your cycles and patterns. If it were up to me, you would be erased from the pages of history, and your name would never be spoken again.

I will promise you one thing. I vow to live until my dying day waging war against you. I commit to doing my part to create a world in which your influence is minimal, in which you are the minority. I pledge to spend the rest of my life fighting for my son, for my family, and for those who have no voice because you have taken it away.

Until we meet again,

Me.

I will fight against injustice in all its forms, but especially when it affects this: my family.

 

 

 

 

Pondering…

Recently I have been pondering.

“Am I a good enough advocate for Jake?”
“What does being a good advocate even look like?”
“How do I advocate for Jake without becoming an obsessive, aggressive, annoying human being?”

And, I think most in keeping with the theme of “pondering”, I wonder “What am I advocating for?”.  Am I looking for equality?  For respect?  For inclusion?  For people to see Jake as I see him?  Unequivocally, the answer to all those questions is YES.

But I have been reading a lot of articles, opinions, and blogs lately that have been focusing on research.  That state that being an advocate involves supporting and pushing for more Down syndrome research to be done.  That call people to action, not just in the lives of their individual loved ones, but in the context of the broader Ds community.

And this, friends, is where I get hung up.

If I were being completely 100% honest and transparent (warning: some of you may be utterly horrified by what I am about to say) I would say that up to this point, I have not cared at all about advocating for Ds research.  I have not felt the urgency for research, because in my mind, Jake is an absolutely lovely and wonderful little boy, and why would I want to push for research that intends to “cure” my son?  I firmly believe that Down syndrome is not something that one needs to be cured of.  I firmly believe that Jake has inherent worth because of his value as an individual, and that his worth is not determined by the number of chromosomes he possesses.

It is possible, however, that I have begun to see the light.  There is a stirring in my soul that is beginning to awaken.  It started with the news release a few weeks ago about the recent research that is taking place and the possibilities it possesses for individuals with Down syndrome (if you want to read more about it, click here to read my last post).  It further developed as I read about this website, One21 and as I began to envision research that is not looking for a “cure” for Down syndrome, but rather looking for ways to better manages the challenges and struggles that Down syndrome brings.

As I look toward the future for Jake, I continue pondering.  If research can help mitigate some of the potential problems for individuals with Down syndrome, then I do believe it’s about time I got on board.  I want to be an advocate for my son in the here-and-now, in the every day.  But I also want to advocate for things that will provide him with a way to better manage the challenges that he is sure to face in the future.

Thoughts?  Ponderings?