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

 

The Space In Between…

It is currently November 4, and I feel stuck in the space in between.

Last week was buzzing with excitement. The anticipation of Halloween was in the air! I was frantically working my fingers to the bone to sew four Halloween costumes for my littles (good Lord let me just tell you, when you have 4 kids, the last thing you should be doing is sewing all of their Halloween costumes! Lesson learned…). The neighborhood was breaking out their Halloween finest, my kids were daily shrieking with the excitement of seeing new decorations, and my oldest three were chattering nonstop about being Batman for Halloween, saying “trick-or-treat”, and getting candy! Halloween night was so fun this year; the older kids really understood the concept of trick-or-treating, and you could see the wonder in their eyes as their goodie bags continued to get more rotund with every stop that was made.

Next week (after Remembrance Day) is my absolute favorite time of the year! The Christmas festivities begin very early in our house, so that we get the most out of the season. Music, lights, decorations, traditions new and old, and the look on my children’s faces as they experience the holiday season. I am barely holding in my own excitement:)

But today? Today I feel stuck in the space in between.
It’s being in limbo.
It’s finishing one celebration and waiting for the next one to arrive.
It’s the let down after the excitement.

It’s also the space to catch your breath, the time to process, evaluate what has passed and look forward to what is ahead. The chance to relish the memories of the past, and dream about the possibilities of the future. The space in between is an important time.

I write this because I feel the strain of this space in between in life, but I feel it even more strongly when I think about my role as an advocate for Jake.

When we were just starting out on the journey, everything was new. I blogged like crazy, partially because I was processing things for myself and blogging was a good outlet for me, and partially because I was advocating in the best way I knew how. I documented everything – my thoughts, feelings, circumstances that arose, situations we encountered, milestones accomplished, conversations spoken, and so much more. And it was exciting, it was cathartic, it was good and purposeful and meaningful.

In this season of life, however, I feel like I’m the space in between.
I don’t always know what to blog about anymore. I don’t feel as much pressure to convince the world of Jake’s worth. (I think you all know how absolutely incredible and amazing he is, and you see his worth without me having to push my agenda on you!) The old season has passed, and the new season is coming. I’m not exactly sure what the new season of advocacy will hold, however, and so I feel in limbo.

And while I don’t love the feeling of being stuck, I am also grounding myself in it, processing what lies behind and what lies ahead, and waiting with eager anticipation to continue to see what this new season of advocacy will look like! I think the changes will be subtle, and I will continue to advocate for Jake and promote awareness and acceptance until the day I die! But I am excited to see the new forms it will take:)

 

Look at me, I’m growing…

Aren’t we all so lucky that we are on a journey?

That none of us can say we’ve arrived, we’ve made it, we’ve become the perfected version of ourselves that we’ve aspired to be all these years?

That’s the preface to my thoughts for tonight (which by the way have very little to do with Down syndrome, and instead have a lot to do with me), because by no means am I trying to portray that I have “arrived” in some way, or that I have made it and can now stop trying because I am perfect. Far. From. It.

But still,

I am growing.

I used to automatically think that everyone and everything in the world was out to get Jake. That every situation was against him, and that it was my job to defend him against every single person in life (there were no boundaries here, I even remember fighting with my hubby and having it come out that I even felt I had to defend Jake against him, which is ludicrous!). I fancied myself a scrappy little fighter, getting into the ring and going head-to-head with the world, all on behalf of my son, who couldn’t do it for himself. The defensive lens was the one through which I viewed every conversation, every interaction, every scenario that happened to Jake. You know, they say that once you build a worldview, everything is perceived through the lens of said viewpoint. And my view was that the world was out to get Jake, and I was the sole, staunch defender of my young son.

Can I tell you a secret?

It’s just not true.
The world is not out to get Jake.
I am not the lone soldier on the battlefield, going to war for the welfare and well-being of my kiddo.

In fact, the longer I travel this journey of being touched by disability, the more apparent it is that my worldview is cracked, flawed, and being broken apart, piece by piece. Have we had some negative experiences in our journey so far? Of course we have. Nothing is perfect, everything is a work in process. But the response of others to our son Jake has been overwhelmingly positive. People are drawn to him. Friends and strangers alike welcome him with open arms and treat him as they would treat any other child. They love him with a fierceness that springs from places they didn’t even know existed in them. And as I grow and begin to let go of the worldview that I desperately clung to, despite its flawed nature, I have started to come to the realization that others in my world are with me in the desire to support and defend Jake. Slowly but surely, I am changing my tune. I am seeing the love and acceptance that runs deep in our circles. I am gradually, albeit imperceptibly at times, chiseling away at the chip on my shoulder to reveal a new worldview, one that is full of hope, promise, and positivity.

Look at me, I’m growing!
 

 

Canadian Down Syndrome Week…

On the heels of the States, in which the month of October is deemed Down syndrome awareness month, comes Canadian Down Syndrome week, from November 1-7 of each year. I used to blog every day in October (following our neighbors south of the border) but the pace of life these days does not leave enough room to write a blog entry every day for an entire month! I am, however, going to blog every day for Canadian Down Syndrome Week (which in the big picture makes more sense anyway, since I am Canadian, and proud of it!!)

5 1/2 years.

When I stop to think about it, I really just can’t even believe that we are already 5 1/2 years into this journey. In some ways it seems like just yesterday that I was holding my very first child, my teeny tiny sweet babe on my chest, sitting in the NICU hospital chair, mesmerized and terrified by the constant movement of the numbers on the monitor screen in front of me. And in other ways, it seems like an eternity has passed, like I am an old, wizened, hardened, and more resilient version of the young new mother that I was as my little boy was passed into my waiting arms for the first time.

We have come so far, our little family.
5 1/2 years ago, Curtis and I were barely 9 months into our marriage. We welcomed Jake into our family, and began to figure out not only what life looked like as new parents, but also what life looked like as new parents of a child with a disability. Now we are seasoned travelers down the road of parenting (okay, we recognize that we are still fairly new at this, but we at least feel like we have some inkling by this point in the journey!), we have four beautiful boys, and life is crazy, chaotic, and full of joy.

And Down syndrome? Well, of course it still plays a part in our lives, and it always will. There are days that are more challenging because of it. There are also days that are much more rewarding because of it. I can’t completely articulate the indelible mark it has left on our lives, because I can’t even begin to comprehend what our life would be like without its presence. What I do know, however, is that I will continue to share our story, to normalize our experience, to raise awareness and acceptance, and to advocate for my son from now until eternity. And that’s what this week is about:)

 

Overwhelmed…

There’s no good way to jump back into blogging, no good way to catch you up on the year (almost) that I missed, no good way to explain all the thoughts, emotions, and events that have occurred over the past year. So, I’ll just dive right into the here and now.

Today I feel overwhelmed.
Today I feel like I’m barely keeping my head above water when it comes to Jake.
Today I wish that I could just be. That Jake could just be.

I wish that I could just sign him up for a swimming class, drop him off, and sit on the bleachers like all the other parents. Instead, I perched nervously at the edge of the pool, ready to spring into action to stop him from launching himself into the deep water out of the sheer excitement of being in the swimming pool. The instructor has assured me that there is an extra person on hand for his class, and she will help Jake and make sure he doesn’t drown, but still…

I wish that I could just drop him off for Sunday school, and pick him up when it’s over. Instead, I get paged out of the service because he had to leave the Large Group, as it was too new, overwhelming, and over-stimulating for him. I get to work with some pretty fantastic volunteers and leaders to come up with a solution and to make it a great experience for Jake, which is so great, but still…

I wish that I could just kiss him goodbye when the bell rings at school, and watch him line up with his class to march into the building. Instead, I need to drag him off the playground, march him right up to the front of his class, and hand him off to the teacher, who takes his hand and leads him inside, for fear that otherwise he will run away. Jake’s teacher is amazing and after six days of school I already know that we are incredibly blessed to have her, but still…

Today I feel overwhelmed.
And what breaks my heart even more is thinking of how overwhelmed he must feel. Everything in his tiny life is new in the past week. New school, new teacher, new aide, new classroom, new routine, new speech therapist, new swimming instructor, new, new, new. Transition is hard for anyone, but when it takes that much longer to get used to routines, I can understand why he falls into bed at night from sheer exhaustion, barely getting out his little prayer before he passes out.

Thankfully, tomorrow is a new day:)

 

 

We Are On Vacation…But Not The Kind You’re Expecting!

Tuesday mornings in my world are initiated with a whirlwind rush of activity, noise, and stress as I round up three munchkins who all have minds of their own and do not like to do things on a schedule, and try and get them out the door and into the car in time to make it to preschool. I often feel harried, haggard, and can feel my frustration levels rising as I am trying to wrangle all the kids into coats, shoes, hats, car seats, you name it.

With coffee in hand, however, the day slowly improves, my heart rate drops back down to the normal range, and my stress meter normalizes again as children are hugged and kissed goodbye, and the morning becomes a time I have come to cherish with just Noah to keep me company.

This morning Noah and I were taking a jaunt around Costco. We were lazily meandering through the aisles, looking at all the toys, perusing the book selection, and chatting away to each other, when the phone rang.

I looked down to see who it was, and it was the number that always comes up when someone calls from the Alberta Children’s Hospital. I answered the phone, and was greeted by someone from Sleep Services, calling to follow up regarding Jake’s last sleep study (which was at the end of September).

{SIDE NOTE: At the last appointment I had with the Sleep Clinic, they warned me that Jake’s carbon dioxide levels had been elevated for the past couple of sleep studies, and that they were going to use the study in September to decide whether or not they should switch him from a CPAP to a BiPAP. Basically a CPAP is one continuous pressure, where a biPAP is a mixture of two pressures, essentially doing the work of breathing in and out, and therefore helping to eliminate more of the carbon dioxide that needs to be eliminated while sleeping.}

It was this context that was forefront in my mind when I answered the phone.

Imagine my utter shock and surprise, then, when I was greeted with a very different conversation.

“Jake is going on vacation”, she told me. “He’s going on a CPAP vacation”!

She then went on to explain that Jake’s last sleep study had been normal! Not “normal for kiddos with Down syndrome”, not “normal for Jake but still severe for the general population”, just simply normal!

His AHI (number of times he stops breathing in one hour) was 1.2. A typical AHI is approximately 1.5!! (and just as a measure of how incredibly amazing 1.2 is, remember that the first sleep study he ever had done his AHI was 94!!)

His oxygen levels were good. His carbon dioxide levels were good. His AHI was actually higher (1.8) for the part of the night when he was wearing the CPAP machine then for the part of the night when he was just sleeping normally!!

So, Jake gets to go on a vacation from the CPAP machine for 6 whole months!!!

They are going to do a repeat study in 6 months, to follow up. They said that sometimes CPAP therapy actually helps bring down inflammation in the airways, and so they don’t know what will happen in these next 6 months. Perhaps without the use of the CPAP machine, his airways will become re-inflamed and he’ll have to start back on the CPAP again. Or perhaps he has grown to the point where he won’t need it for the foreseeable future. What lies ahead is uncertain, but one thing is certain for now…

We are on vacation baby!!

Seriously the best news I’ve heard in a long time:)
This is us, celebrating with ice cream after preschool!

 

[31 for 21] ~ A Lot Can Happen In a Year…

A lot can happen in a year.

Just one of the unforgettable kiddos I had the pleasure of meeting in Guatemala.

Last year in October I wrote a two-part post series.

The first post (which was titled “Begging For Dignity”) was about a school for children with disabilities, located in Guatemala. In this post, I talked about how I have visited this school, how I have wept at the plight of those with disabilities in Guatemala, and how I left a piece of my heart with the students and teachers there when I visited 2 1/2 years ago (Just as an update, I had the opportunity to go back there this past March and spend a week working in the school, and once again, it was inspiring, heartbreaking, passion-renewing, and life-changing).

One of the first two items I ever sold in my store, “321 Joy”!

The second post (which was titled “Here’s Me, Leaping!!”) was about what I hoped to contribute to this school. In this post, I explained that I had started an Etsy store, and at the time of the post, I had 2 items for sale in my store! They were “321” shirts, in honor of Down syndrome awareness (3 copies of the 21st chromosome), and I was planning on donating a portion of the proceeds from the shirts to the school in rural Guatemala.

I remember distinctly writing this phrase in that post:

“This could flop. I am well aware of it. I mean, I think the shirts are adorbs, but come on, I made them for heaven’s sake, so I am a wee bit biased! Regardless of the outcome, however, I really felt as though this was something I needed to do, to step out of my comfort zone and take a leap of faith. So, here’s me, leaping!!”

A year later, I am so pleased to let you all know that it has not been a flop!

In fact, my Etsy store, which I have named “321 Joy” (click HERE for the link to the store or HERE for a link to 321 Joy’s Facebook page) has been a great success (at least in my books!)
I have sold close to 150 items. I have had 73 different items go through my shop, and currently have 49 items for sale. I am getting the chance to use some of my creative abilities, and am really enjoying the outlet (and the change of pace from changing diapers and cleaning up messes all day!). And most importantly, I am donating 10% of every order I get right back into the school in Guatemala. Some days it doesn’t feel like much of a contribution, but I am doing what I can with what I have been given, and I know that for the kiddos in the school who are on the receiving end, even a little bit is better than nothing.

So here’s my shameless plug…I am sorry for it, but kind of not at the same time:)

Buy my stuff!
Support this school in Guatemala, and these precious kiddos, who so desperately need more than they will ever be afforded the opportunity to have, solely because of the system they happened to be born into.
Get your friends on board.
Support not only this school for kiddos with disabilities, but also raise awareness of Down syndrome with the “321” shirts.
“Like” my Facebook page (“321 Joy”) for more updates, new listings, and better communication!

*These are just a few pics of some items I am selling right now*

It sure is true that a lot can happen in a year:)

 

[31 for 21] ~ The Parentals…

In keeping with the theme of Fridays, I am so excited this morning to have another guest blogger who is willing to share her heart with you, and present a different and fresh perspective!

Merissa and I have been friends for ages, truly too long to remember!! (dont you just love friends like that? The ones where you can remember the beginning of the friendship if you try really hard and count back dates, but really it just seems like they’ve always been a part of your life and that’s the way you like it!) Like my friend Julie from last week, Merissa has walked with me (and I with her) through many of the ups and downs of life. I am so blessed by her presence and influence in my life, and in my family’s life. Thank you Mer for agreeing to do this for me…you rock!!

The Parentals

We don’t get to pick our parents. When we come into this world, we come in completely vulnerable. We can’t feed ourselves. We can’t clean ourselves. And we certainly can’t do anything to ensure our own survival.
We enter the world bloody and screaming, healthy or unhealthy… and two human beings (or sometimes just one) are responsible for our entire wellbeing. We get no say in the matter.

But I truly believe that there is a God who does.

I remember getting the phone call from Karyn the evening after Jake was born. We had walked through 8 years of friendship at that point and as she had become one of my best friends (she still is!), I couldn’t wait to hear how her first labour went. I was so excited to hear her voice.

Her voice was quiet: “Merissa, Jake has Down syndrome”.

For the next while on the phone, we cried together. We were silent together.

A week or so later, the women in the Slaters’ life came together and held a beautiful baby shower for Jake. I watched as a couple dozen women spoke into Karyn’s life. The predominant message was this: God did not make a mistake in blessing this tiny little boy with Karyn and Curtis as his parents. They are a special couple, chosen by God to guard, protect, nurture and grow this beautiful little son of theirs.

I got to hold Jake for the first time 6 weeks after his birth, when he finally came home from the NICU. As I held that little guy in my arms – his little head no bigger than a small orange, and his little hand barely wrapped around my finger – I couldn’t help but weep.

I cried not because I was sad, but because I knew I was holding a promise in my arms. A promise from God that He had provided Jake with everything he needs in this world. I also felt so blessed to meet Jake.

Karyn and Curtis love their kids – not just the feeling, but in the way that they live. In the four years since, I have seen Karyn, a lover of justice, advocate on behalf of her son in his vulnerability. I have seen her grow greatly as a mother. She possesses a love that is fierce and encompassing. And it shows.

Karyn and Curtis have taught Jake how to communicate his feelings and needs. Curtis works extremely hard to provide for Jake and the rest of the Slater family. He is so loved and respected by his little boys. When I am at the Slater’s when Curtis comes home from work, every time – without fail – all three boys will run full-speed to hug their dad as he walks through the door, yelling “DADDY!” It brings a smile to my face every time.

Together Curtis and Karyn have also sought out resources for Jake’s growth and development that I never even knew existed! They have spent countless sleepless nights making sure Jake feels safe while he is in the hospital with breathing troubles, or at home when he is pulling off that uncomfortable c-pap mask (or eating it).

I can only thank God for how He has gifted Jake with Curtis and Karyn as parents. He has scored big-time!

And I have scored big-time too. God has given me the chance to be part of the journey with them.

 

[31 for 21] ~ Today, I Wept…

I have always appreciated how where we live in Canada there are four distinct seasons.
About half the time, I am all on board for the changing of the seasons. Okay, let’s be honest here, I am fully committed when we are changing from Winter to Spring, and from Spring to Summer. The other half of the time however (obviously I am talking about from Summer to Fall, and even worse, Fall to Winter) I dread. I drag my heels, I complain, I pout that the warm weather is leaving and the advent of what seems like the eternal winter is upon us once more. Throughout the entire winter, I find that I constantly need to remind myself that it is just a season. That this too, shall pass.

This morning Jake and I were in his weekly Speech session at PREP, the preschool he attends twice a week for children with Down syndrome. We had just finished what I thought was a really fantastic speech session. He was engaged and involved during activities that are typically non-preferred for him, and he pushed through an activity that he was not interested in at all, and completed it. I was so proud of him and the progress that he is making with his new Speech Therapist.

We left her office, and were standing at the door to go downstairs to his preschool room. Before opening the door, however, I stopped to chat with a friend, who was there for a different class with her little guy. In the middle of my conversation with her, there was a commotion. I stopped talking and looked over, just in time to see Jake pushing another little one down to the ground, and standing over him pulling on his hair. I immediately stopped him, scolded him, and made him apologize to the poor little boy. Compliantly, he did apologize, I apologized profusely to the mother, and, full of shame and embarrassment, I quickly excused myself and took Jake down to school.

I came back upstairs after dropping him off, got into my car, and wept. I bawled like a baby for a good half an hour. Huge, heaving, ugly sobs of frustration and disappointment and embarrassment and inadequacy.

I wept because this was not an isolated incident. There was that time at the park last week, where he went up to a random kid and pushed him over for no reason. There was that time a few days ago that he bit his cousin on the cheek, completely unprovoked. There was that time today, after preschool, where his gymnastics instructor told me very gently, that he has developed a new behavior in the class of attempting to bite people who get in his way. There was that time yesterday at his typical preschool where his aide stopped him as he was reaching out to pinch a peer. And the list goes on…

I wept because I don’t understand. There have been no changes in our schedule or routine, there have been no major life transitions that have occurred lately, there has been nothing to suggest that he should be acting out in this way. I do not understand why the sudden change in my once easy-going child.

I wept because I want more for Jake. I want him to have friends, not drive his peers away with his erratic behavior. I want to be able to trust him around other kids. I want to continue to provide him with more opportunities for independence and growth, not feel as though I have to monitor his actions more closely. I want him to be a healthy, well-rounded child, capable of understanding and controlling his impulses.

I wept because I feel like a failure. Like I am somehow not providing him with the tools and resources he needs to be able to function in appropriate ways. Like I am failing Jake in the moments he needs me the most.

I don’t understand this new phase. I don’t know where it came from, why it exists, or how to navigate through it.
I know it is just a season. I know that this, too, shall pass.

But today, I wept.

Look at this cuteness! Why does it seem like this stage is like Dr. Jekyll and Mr. Hyde? One second, cute! The other second, pushing people over and biting. Grrr…

 

[31 for 21] ~ Wordless Wednesday…

First day of swimming lessons for this guy:) Nervous but excited!

#whatjakewears

#howjakesleeps

Me and the babe.

And this. Not wordless. Actually learning how to use words and read words! (a VERY SLOW work, despite the apparent success of the video…I just caught him on a good day!)