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

 

[31 for 21] ~ The Nuances Matter…

At the end of the summer as I began to look forward to the fall and what it would bring for our family, I started to look into some programs for my older kiddos. I really wanted both Jake and Cole to be in swimming lessons, as well as gymnastics. And so I began calling around, trying to get information from different organizations about what it would take for me to be able to sign Jake up for their programs. This was our first foray into the world of true inclusion, and since I am a newbie in this arena, I wanted to make sure I was doing it right.

I called an organization in the city that, ironically, is mandated with providing services to adults with disabilities. They run a social enterprise in order to help them achieve their financial goals. This social enterprise is a recreation program at their facility, which includes a pool and offers swimming lessons. When I spoke with them on the phone, I explained our situation. I told them that my oldest son has Down syndrome. I expressed my desire for him to be enrolled in their swimming class, and asked if that would be possible. I inquired as to what it would take to make that happen.

The response I got was very interesting to me, considering they are an organization working in the disability sector. They were very nonchalant and noncommittal about the whole thing. They had no real answers, opinions, or advice for me. They told me that they could probably take him in one of their classes, but that I may need to provide additional support. To be honest, if I were to sum up my interaction with them in one word, it would be this: tolerated. The vibe they put out during our conversation was that Jake would be tolerated in their program, but that it would be up to me to make sure he could function.

My next phone call was to the gymnastics center closest to our house. They run a program for 3-4 year olds that I thought would be perfect, since I could put Jake and Cole in a class together. Again, I explained my somewhat unique situation, and asked what my options were.

The response I got was phenomenal. They put me on hold for a couple of minutes, and went and found the director for the preschool program. He got on the phone, and as I explained my situation to him, he was overwhelmingly positive about the possibilities. He told me that the center absolutely, unequivocally, without question wanted Jake to be a part of the class. He explained to me that they work very hard to create an inclusive environment that is conducive to all children. He suggested that I sign up both of my children right away, and told me that I should absolutely not send an aide with Jake, or stay in the class with him myself. He made it known to me that he is training all of their instructors to be able to help all children function well in their classes. If that means extra help, extra support, or an extra hand, then so be it! I left the conversation with tears of joy in my eyes. I would sum up my interaction with them in one word: embraced. The vibe I got from them was that Jake would be embraced in their program, and they would do everything possible to make sure he could function.

Guess which one we chose?!

Waiting “patiently” for gymnastics to start!!

Tolerated.
Embraced.

There is a world of difference between these two words.
Neither organization flat out denied my child access to their program. Both of them stated that they would, in fact, enroll Jake.
But while the outcome was the same, the tone behind it was completely different.

I am so incredibly thankful for organizations that choose to embrace my child.
He deserves nothing less:)

Addendum: We ended up signing both our kiddos up for the gymnastics program, but ultimately looked elsewhere for swimming lessons for Jake. Because at the end of the day, the nuances matter…

 

#ChangingTheFaceOfBeauty…

I love movements.
I love it when small groups of people decide to make a difference in their spheres of influence.
I love seeing an idea grow, flourish, and become something that touches many, and changes the world.
I secretly (or not-so-secretly) hope that I too, one day, can spearhead something bigger than me.

That’s why I’m excited about this movement: #ChangingTheFaceOfBeauty“. It might not be my biggest passion, but it is something I can get on board with, something I can get behind and become excited about. It might not be where I spend all my energy, but it is something I will support and give credence to.

The mission behind the campaign is simple: “to encourage the integration of individuals with disabilities into general advertising and the media” (taken straight from their website, which can be found here). They want to do this to send a message to society; a message I think is well worth the sending ~ namely, that it is okay to have disabilities and challenges, and this does not make one any less worthy, any less beautiful, or deserving of any less respect. They hope to show that beauty is far more than the shallow, superficial spin that our society often puts on it; that beauty can be found everywhere.

Like here…

And here…

The campaign is simple! The folks over at “Changing The Face Of Beauty” are hoping to get 15 major retailers in 2015 to include people with disabilities in their advertising. They are driving this campaign through social media, calling retailers to a higher standard of inclusion.

Here’s what you do to take part alongside them:

Step 1- Share a photo of your little model, or yourself, if you have a disability on your favorite social media outlet. (I am sharing here on my blog, but will also periodically be sharing on my Instagram feed, which can be found here (I am @karynmslater if you are looking for me on Instagram)

Step 2 – Tag the photo with #ChangingTheFaceOfBeauty #ImReady #15in2015

Step 3 – Tag a few major retailers. Pick ones that matter to you.

Step 4 – Tell a friend. Tell lots of friends!

Here’s me, putting my little drop into the big bucket, hoping that with enough drops, we will see a deluge and the face of beauty will begin to change.
So come on:) Share, share, share! Share this blog post! Share pics of your little ones (or mine!). Let’s do this…

 

[31 for 21] ~ The Great School Debate

School.

The word itself sends shivers up my spine.  And not the good kind.  The I-don’t-even-want-to-start-thinking-about-sending-my-precious-kid-into-the-shark-tank kind of shivers.

If the truth be told, I am terrified of school.  In my naive, my-kid-is-only-two mentality, I feel as though the advent of school will truly mark the stage of life where Jake is out in the world.  Where I am not there 24/7 to protect him and advocate for him.  Where he will begin a whole new stage of life, complete with the possibility of being bullied, being picked on, or being labelled as “different”.  If the truth be told, it scares the crap out of me.

I hope I’m wrong.  I pray that in hindsight, I can chide myself for ever thinking the negative thoughts that pervade my mind at this point.  I know that our education system is making incredible progress.  I have heard of teachers who are amazing, individuals who have gone above and beyond to ensure true inclusion, acceptance, and respect.  I dare to dream that these stories will become a reality for Jake one day.

But for now, I worry.  I fret.  And I. Am. Terrified.

One of the questions I received as a part of my Q&A plea goes along with the topic of school.  It has made me think about what I truly desire for Jake when it comes to his education.  Here is the question, followed by my convoluted answer, interspersed (as always) with my random thoughts on the subject of school, education, and inclusion.  Enjoy:)

There were times as a PUF assistant that I felt I was not given the opportunity to find a way to include the boy I was working with because the activity was beyond his skill level. The Kindergarten teacher told me to take him out or away from the action, even though inclusivity was the goal. I felt frustrated and it singled him out. Would you as a parent feel hurt by this decision? Would you want Jake a part of a public school kindergarten?

At this point in our journey, and knowing what we currently know about Jake, about his personality, and about his growth and development up to the present, Curtis and I would say unequivocally that YES, we want Jake to be a part of the public school system.

We would love inclusion to work for our child.  We are planning on doing everything possible to send Jake to a school that not only preaches inclusion, but also practices it in a way that actually works for the students.  We fully understand that Jake’s learning curve will look different from that of his typical peers.  We fully recognize that there will be areas of weakness for Jake, and that his curriculum will likely need to be modified.  We readily acknowledge that the process will not be seamless.

Having said all this, however, I also feel very strongly that Curtis and I will need to advocate for Jake on a regular basis throughout his school years.  If a teacher was constantly suggesting that my child be removed from an activity, especially when inclusive education is the goal, I would definitely feel hurt by this decision.  I would also without doubt advocate for Jake, so as to limit the number of times in which decisions that were a detriment to my child’s inclusion were made in the classroom.

Ultimately, we want to give Jake the best education possible.  The education that he deserves.  The education that will inspire him to be a life-long learner.  The education that will make it possible for him to make wise decisions and succeed at what he does.  If, at some point down the road, we come to the conclusion that an inclusive setting in the public school system is not providing that for our son, we will weigh our options, and go from there.  For now, however, based on what we know about Jake so far, the direction we are heading is towards inclusion.

Thank goodness that day is far off:)  Today I can just enjoy my tiny two-year old toddler, and breathe easy!

 

[31 for 21] ~ Explanation Promotes Acceptance

How do I best explain Ds to my kids?  I want them to ask questions, but don’t want them to “stare”.  Is it appropriate for me to say hello to a stranger, or smile at their child, when we meet in passing in public?

I had a tough time with this question!  Mainly because I know there are better answers out there for how to best explain Down syndrome to kids.  My answer is still, in large part, coming from a place of inexperience.  Since Jake is still so young, as are his contemporaries, they do not notice (or are too young to understand) that there are any differences at all.  I am sure as Jake grows, I will refine my answer to this question, but here’s my initial stab at it!

First, the easy part!
It is totally appropriate (in my opinion) to say hello to a stranger, or smile at their child!  With one proviso: that it is not a pity smile.  I regularly have people smile, nod, or say hello to me when I am out with Jake.  He is like a tiny little people magnet!  Some people may just have a soft spot in their heart when they see him, others I’m sure are giving me a nod of understanding, as their lives have most likely been touched by someone with a disability, and still others may just appreciate the journey we are on.  For me personally, I am never bothered or offended by people “reaching out” in this small way; as long as the interactions are positive and uplifting.

Second, the hard part!
I have had several opportunities to begin to explain some things to my older nephews.  It seems to be an ongoing conversation with them; it’s not like I sat down once, outlined everything, and then they “got it”.  It has evolved into somewhat of a fluid discussion, and is actually pretty cool.
The first time I ever talked to my oldest nephew, Elijah, about it, this is how the conversation went:

We were driving in the car, and Elijah, out of the blue, asked me why Jake’s eyes looked like his own (as a point of context, my sister is married to someone of Korean descent, so her children have very almond-shaped eyes).  I then got to explain that Jake has something called Down syndrome, which is when every single cell in Jake’s body has something extra in it that most people’s cells don’t have.  I said that this makes Jake really special and unique.  I said that this extra “stuff” causes some differences in Jake, like his eyes looking a little different than mine, or his ears being extra small.  I said that this extra “stuff” will cause Jake to always need a little extra time and a little extra help to learn how to do things.  I said that Jake was super lucky to have a cousin as great as Elijah to teach him.  Elijah took in all the information, said “cool”, and that was the end of that!

Since then, we have gone back to the subject whenever it comes up naturally.  If Jake is having a very difficult time doing something, or if my nephews notice that other children his age are already learning how to do things that Jake cannot do yet, like speak, then we talk about it again.  I remind them that because Jake has Down syndrome, he will always have a harder time learning things, and it will always take him a little bit longer.  Then I remind them that we can help Jake, encourage him, and be there to teach him.  I also try and tell them that Jake is also really great at some things too.  He has a great sense of humor, he likes to make people laugh, he is very social, etc…

I don’t take offense when my nephews ask questions.  Even if they sometimes come across the wrong way.  Kids are inquisitive, and they are legitimately just trying to learn more about why things are the way they are.  I welcome questions, even ones that sound rude, because to me, they are the open door to discussion, and ultimately to understanding and acceptance.

Like I said, I’m sure there are better answers out there.  I’m still new at this!  I’m still learning.  But I think the most important piece, when talking to kids or adults alike, is to explain that the similarities outweigh the differences, and to explain the differences in such a way that it promotes inclusion, respect, and acceptance.

Totally random, I know! Just experimenting with filters, and this one is kind of cool!!