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

 

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] ~ Out of the Shadow to Shine…

I am super excited today, as I have a guest blogger on my blog to share her heart with you:)
I will be short and sweet, I just want to introduce her and her story to you.

Her name is Carrie.
I know Carrie because we used to go to the same church.
I also know Carrie because when I was pregnant with Jake, she was pregnant with her twins!
It ended up that because of medical complications with Jake, and because twins often arrive prematurely, we were in the same hospital, delivering our babies within a couple of days of each other!
It also ended up that all three of our babies were in the same NICU for a few weeks after birth, and so Carrie and I formed a bond that many people will never get to experience. I value that bond significantly and treasure those times with her, and although we don’t see each other very often anymore, I am forever grateful for the partner in the journey during those early weeks of Jake’s life.

Carrie has also worked in the school system with children with disabilities, which makes her the perfect person to blog for me!
I so appreciate the perspective that she carries; the perspective of exposure to the world of disabilities, but not from the angle of having her own child with a disability. She has much wisdom to offer because of her experiences, and she gives me a ton of hope for Jake’s future in the school system, as her heart shines through her stories.

So, without further ado, here is Carrie’s story! Enjoy! And Carrie, thanks a million:) I hope and pray that when Jake arrives on the Kindergarten scene next year, he gets an Education Assistant like you!

OUT OF THE SHADOW TO SHINE

I was excited to have received and accepted my first position with the Rocky View School Division as a PUF Assistant (an assistant in the classroom to help children with disabilities).  My first day on the job had arrived and I would be meeting Ty, the little boy whom I would be assisting, and his Mom.  My first impression of Ty was that he was completely adorable.  He stood there with a big welcoming grin, waving to me as I walked toward him and his Mom.  This feeling of warmth soon changed as I introduced myself and shook hands with his Mom, she looked me square in the eye and boldly stated, “The first time I see bruises on my son I will have you fired!”  I had first day jitters as it was, and through a rising lump in my throat I choked out, “I will care for and treat your son as if he were my own.”   The words just tumbled out, but I meant those words with conviction. I would sincerely respect, protect, and care for Ty as I would my own child and never deliberately harm him.  Her defensive expression changed as she smiled and hugged Ty and wished him a good day at Kindergarten.  With her departure, this little blonde cutie took my hand and we entered the Kindergarten class together.  Together we would venture on a path of learning and growth that would alter my naive outlook on children with disabilities, and in particular children with Down syndrome.

The harsh words echoed in my mind and I realized his mom’s warning came from a “mamma bear’s” sense of protection.  After all I was a complete stranger being entrusted with her precious son.  He was a part of a vulnerable sector of society, as are all children, and was partially nonverbal at this point in time.  I no longer felt threatened, but her sentiments magnified the feelings of over protectiveness that I felt toward Ty. I hovered over him, with the thought of protecting him from anything and everybody.  The supervisor of the Special Education team told me that I would have to stop smothering him if he was to grow and learn.  It became apparent that I was not treating him like I would my own child; I was standing in the way of his potential. He also had unique challenges and learned differently than my own child.

As I stopped shadowing over Ty, he began to shine and we all gained a better understanding of his competencies.  Each day Ty would choose other children to partner with him in all aspects of his learning and therapy. From October to December he learned all of the children’s names in the class, learned classroom routines, stopped holding my hand as much, and made friendships, especially with the girls who loved his hugs.  He had many IPP goals (Individualized Program Plan) and with the classroom teachers direction I worked on a few at a time. Ty and I had been working on printing his name.  Like my own child, he responded best to a play and pretend approach, so with the use of his favorite plastic monkey from the toy bin, he drew vertical lines on a white board to represent a cage.  Then he worked on horizontal lines the next week to” fence” in his monkey.  This was not an easy task for him, as gripping the marker was challenging.  Finally the day had arrived that he would put a vertical line together with a horizontal line to form the letter T.  He glanced at his name printed at the top of the white board and with much determination printed the letter T!  I felt an overwhelming sense of joy for him, exclaiming, “Way to go, you did it!”  Some of his classmates came over to see what we were so excited about.  They cheered as well and Ty celebrated this monumental occasion with his best buddies.  He looked so proud and jumped up and down, smiling and saying, “The letter T for Ty.”

That Christmas Ty’s Mom had him print the letter T in all of their cards; she wanted to show everyone what he had accomplished.  All of her initial apprehension was replaced with a trust in me and a cooperative sense that we were in this together.  Together we believed in Ty and wanted to see him reach his goals.  She even hugged and thanked me, as I stood sheepishly explaining, the day he actually did get a bruise on his head in gym class.  That bruise meant he was taking risks, participating and learning just like the other kids.

 

[31 for 21] ~ I Had a Feeling…

It’s quiet time in my house.
Quiet time. You know, that time when all your kiddos are (supposedly) napping or being restful and quiet?
Quiet time. You know, that time when you get to unwind, rest, and relax? (who am I kidding, more like that time when you frantically run around the house trying to get stuff done, because you know in two hours the kids are going to be done with quiet time and ready to mess up everything you have just worked so hard to clean!)

Who would think that these three could create such disasters in my house?!

I mean, come on! Don’t they look so sweet and innocent?? 🙂

Anyway, today during quiet time I am choosing to blog! And as I lie on my bed, computer on my lap, and look down at my almost-18-week belly, flashes come back to me. Memories of the first 18-week belly that I was privileged to have. Snippets of conversations, of thoughts and emotions, of certainty that foreshadowed reality. As I look back on it now, the best way to describe it is to say that I had a feeling…

It was a chilly winter weekend, and Curtis and I were on our way to visit some friends who lived just out of the city. I was 18 weeks pregnant with our first baby, and the friends we were going to visit were also pregnant with their first, so it seemed that whenever we got together, there was lots to talk about!

As we were on our way to their house, our conversation flitted from one thing to another, generally lighthearted, simple conversation that was our way of catching up on the details of life. In the back of my head, however, thoughts were nagging. Voices were beginning to battle inside of me, one side telling me I should speak up about my fears, and the other side telling me I was being ridiculous. After a few minutes of silence, Curtis could sense that I had something that I wanted to talk about, and so he prompted me to share. Hesitant at first, I began to voice my concerns, timid at first, but then slowly picking up velocity like a snowball that starts out small, but grows and grows as it is propelled into existence.

“What if…our baby…has…Down syndrome” I haltingly sputtered.

Of course Curtis’ initial reaction, much like any other person would have reacted, was to try and diffuse the situation. I don’t remember the exact words he used, but they were something to the effect of “You’re crazy! Of course our baby doesn’t have Down syndrome!”. Being the amazing husband he is, however, he let me voice my concerns.

At this point, we were getting close to arriving at our destination, but I was in full panic mode. I had been feeling like this for weeks, but had been too scared to say anything to anyone, for fear of being dismissed or ridiculed. But now, the floodgates had opened. I was a bawling, sobbing mess. Every fear that I had about our baby came out in that conversation, but at the end of it all, I just could not shake the feeling that our baby had Down syndrome.

Thankfully, my husband is amazing. After listening to how panicked I was, and how much of a real issue this was for me, he reacted perfectly by saying:

“So what? So what if our baby does have Down syndrome? Is that going to change anything? Are we going to love the baby any less?”.

And I remember. I remember we had a very hard, open and honest conversation about what that would look like. We both decided that it would be okay, that we would adjust, that we would be able to handle whatever came our way. We both chose love in that moment. We made the decision to love our baby. End of discussion.

I am sure that Curtis didn’t think twice about that conversation. In his mind, it was the ranting of an overly hormonal, pregnant, emotional woman who throughout the pregnancy had experienced more than one hypochondriac-type moment. For me, however, that conversation replayed almost daily in my mind. Throughout the rest of my pregnancy, that feeling, that foreboding, never went away.

I would mention it to those closest to me, and they did ridicule me for it. (again, I don’t blame them in the least! I think I would have done the same thing in their shoes). I remember developing thick skin, as it because a regular occurrence around the table at dinner with my extended family to poke fun at my hypochondriac ways. I was told that I was imagining things so many times that I truly began to wonder what was wrong with me. If I was the only person who had a feeling, was that just me being paranoid? If I was the only person who had a feeling, was that just me being over-emotional and imagining all the worst-case scenarios? If I was the only person who had a feeling, was I just crazy?

Looking back now, I know.
I know I wasn’t crazy. I know I wasn’t imagining things.

Looking back now, I truly believe that I was being prepared.
That the feeling I carried deep within my soul was, in some way, preparing me for the journey to come.
And so, at the end of it all, I am thankful for the feeling…

 

[31 for 21] ~ Introducing… (trust me, you want to read this one!)

After Jake was born, we went through a process.

We went through the process of grieving the loss of what we had thought our lives would be like, and coming to terms with the reality of what our lives were going to look like. At the end of this process, after a time of assimilation, we realized that we were still going to have a pretty amazing life, and what was more, our kiddo was also going to have an amazing life.

During the process of grieving, however, I remember having the conversation with my husband about whether or not we were going to have more kids. For him, it was a no-brainer that of course we were going to have more kids! That had been the plan from the beginning, and he didn’t think for one second that we should change course. For me, I think I needed a little longer to adjust. The shock of the diagnosis had not fully worn off, and as we were very new on the journey I was more afraid, more uncertain, and more hesitant.

Ultimately though, we both wanted a big family, and no diagnosis was enough to keep us from pursuing that.
So, when Jake was a mere 14 months old, our second baby boy Cole made his appearance in the world!

About 20 months after Cole was born, our third baby boy Noah came on the scene in full force! (if anyone was actually keeping track of timelines here, you would notice that when we had Noah, Jake wasn’t even three years old yet! So we had our hands full with a 2 year old, a 1 year old, and a newborn!!)

And today, we are proud to announce, that almost exactly 24 months to the day after Noah arrived on the scene, we will be adding to our family one more time! Baby Slater #4 is scheduled to arrive in March 2016!! And we couldn’t be more thrilled:) We will have more info and pictures to come in the next little while, but for now, let me introduce you to the newest member of our family!

 

[31 for 21] ~ Presume Competence…

Dear: (insert your name here)…

(Preschool Teacher, Swimming Instructor, Sunday School Teacher, Classroom Aide, Gymnastics Coach, Medical Professional, Therapist of any sort, Friends, Family, Acquaintances, and anyone else I may possibly have missed)

I. Appreciate. You.

I believe I regularly forget to tell you that.
Whether I am breathlessly rushing in or out the door to drop off or pick up Jake from something, whether I am busy wrangling my other kids while trying to make sure not to lose Jake in the process, or whether I am just totally distracted, lost in a moment of thought, I often forget to express my appreciation to you, the village who is helping me raise Jake. This is me, thanking you.

I appreciate how much you care, really care, about my son. I know this because I see the way you look at him, the way you speak about him, the interactions that you have with him. I know this because in my conversations with you it is glaringly obvious. I know this because of your willingness to openly dialogue with me about how Jake is doing, and what we can be doing to help him reach his potential in whatever sphere of influence you have in his life. This is me, thanking you.

You often ask me, whether directly or indirectly, what you need to know about Jake. I could go on for hours about how he has an amazing little personality, about how he draws people to himself, about his wicked sense of humor, about his desperate desire for communication, or about his ability to enjoy life. The biggest piece of advice I have for you about my son, however, is this:

Presume Competence.

So often visible disabilities develop a bad reputation. I am well aware of this. I most likely perpetuated it before I knew better. But I want to let you in on a little secret regarding Jake: he is very competent. He knows how to work you! He understands amazingly more than he can respond to. He is constantly taking in and evaluating the world around him. He is a quick learner when motivated. And although he may be moving at a slower rate than his typically-developing peers, he is constantly reaching milestones, pushing forward, and adding to his understanding.

Presume Competence.
Hold him to a high standard.
Set the bar high, and then help him reach for it.

This is me, thanking you in advance.
I promise you will be amazed.

Sincerely,

This thankful momma.

“I can do this”!!

 

[31 for 21] ~ #howjakesleeps…

Today is Sunday, a day of rest.

So, instead of posting about all my thoughts on disability, I thought I’d lighten things up for you today!

Many of you will have already seen some, if not all, of this series of pictures. For those of you who have, I’m sorry that this is a repeat, but I’m sure you will still find the hilarity in seeing them again! For those of you who are new to this series, it is a running series that I have going on Instagram called #howjakesleeps. The impetus for this series is just that Jake falls asleep in the craziest places and most interesting positions, and so I decided that it would be fun to document it!

And so, I give you #howjakesleeps…

 

[31 for 21] ~ He Leaves an Impression…

Scene 1:

Jake and Cole are at their weekly gymnastics class (more on gymnastics and inclusion in another post…). It is the middle of the afternoon. I am standing in the waiting area, trying to keep Noah occupied. Noah is only 18 months old, and gymnastics falls smack dab in the middle of nap time, so keeping Noah entertained and happy is a chore! I am simultaneously trying to make sure Noah doesn’t get his hand stuck in the vending machine (which I believe he stole money out of, since I found a quarter in his hand as he was playing!) and trying to keep an eye on the class in an effort to make sure Jake is following instructions and not jumping into the foam pit without supervision (hypothetically speaking of course!). As my brain is firing in ten different directions, I hear a voice behind me:

“Are you Jake’s mom?”

“Yes!” I reply. “How do you know Jake?”

“I am a nurse at the Children’s Hospital, and I remember being his nurse one time when he was admitted. He is such a great kid!”

Jake hasn’t been admitted to the hospital for a year and a half! Talk about leaving a good impression…:)

Scene 2:

We arrived at the Children’s Hospital a week ago for a routine overnight sleep study for Jake. We were ushered upstairs with the other sleep study participants, and showed to our room for the evening. Two technicians came into the room together. One introduced herself as the person who would be our technician for the night, and I remembered her from a previous sleep study. The other one just came in to talk to Jake and say hi to him, and I remembered her as being a technician from an even older sleep study. They were both so excited to see Jake, and their comment to me was this:

“We fought over who was going to get to be Jake’s technician tonight”!

Impression left…

Scene 3:

This morning Jake had an ultrasound before school. He played happily in the waiting room until it was our turn to go in. As we were following our ultrasound technician into the room, another employee looked at me and said that she recognized Jake, but she couldn’t place from where. I suggested that we had been to the ultrasound place before, and perhaps she had seen him then. As we were coming out of our appointment, she was waiting for us.

“I know!” she exclaimed. “Were you guys at the Ups and Downs Walk this summer?”.

(Ups and Downs is an organization in Calgary that runs events for the Down syndrome community, and every year they do a family 3K run/walk to raise money and awareness.)

I replied that we were at the walk, and she excitedly exclaimed that she too had attended the walk with her little one!

There were hundreds of people at this walk, and this was a family that I was not familiar with. But still…Jake left an impression…

So far in his little life, all of the impressions that I have heard about have been positive. Oh how I hope that this trajectory continues. My prayer for Jake is that his impression comes not through his diagnosis of Down syndrome, but rather through the impact that he makes on the world, and the influence he is on those around him.

I’d love love love to hear what impression Jake has left on you! Comment, message me, email me, or let me know somehow! Maybe I’ll try and compile all the responses into a post…that’d be kinda cool!

 

[31 for 21] ~ Wave Your “Awesome” Flag High…

Much of my experience of having a child with a disability thus far has been the seemingly unlikely fusion of joy and pain. Yes, sometimes they can be picked apart, separated, seen as individual entities. Events occur which invoke joy. Other events elicit a response of pain. But often in my own limited experience, the two are fused together, occurring simultaneously.A friend sent me the link to a blog post the other day, and it expressed my emotions so well that I decided that instead of trying to recreate the same feelings and emotions with different words, I would let this author speak for me today. To me, she emulates the struggle of joy and pain co-existing, as on the one hand she speaks with such overwhelming joy about the gift that her daughter is, while on the other hand she expresses the pain of wanting other people to view her daughter through the same lens that she does.It could literally be me writing these thoughts, word for word (though probably less eloquently!!). So as you read, please think of me, think of Jake, and challenge yourself to wrestle with this profound question that the author poses at the end of the article:In what ways do I need to become uncomfortable, think differently, and change so that others can wave their “awesome” flag high?

I would love to be able to dialogue with you about the article, and would be thrilled to hear thoughts, responses, etc…
She is a phenomenal writer…so enjoy!!

This kid. Pretty awesome.

And as his mom, I will never stop figuring out how to help him wave his “awesome” flag.

I will never stop advocating.

But I will also ask myself how I can change to help someone else succeed.

What to Do With the Pain of Wanting Somebody Else to Change

by Heather Avis

My eldest daughter started first grade this year. As the school year began and we stepped onto her new campus, I knew our journey would be much different than the majority of the kids on campus.

You see, my daughter has Down syndrome.

And with that extra chromosome comes a whole lot of awesome.

She’s basically one of the coolest people I know. But with that extra chromosome comes a whole lot of junk. The junk we deal with because of her extra chromosome has nothing to do with her, but rather everything to do with the way she is perceived by the people around her.

It’s as though she popped out of the womb waving her “awesome” flag and as she encounters the world, the people in it, the ones who have chosen not to get to know someone like my daughter, are splattering her “awesome” flag with their ideas and agendas and ignorance and trying to cover up her awesome.

As my daughter began school I wished people saw all the awesome.

I wished when the kids and the teachers and parents saw her march in, waving her awesome flag, they would have lined up to see who would get to sit next to her in class, or be her teacher, or invite her over to play.

But by the time she enters first grade, her flag is already tarnished by the paint those who don’t understand have splattered on it.

As the mother of a child with Down syndrome I see, know and live the reality that something has got to change. And honestly, I have done almost all I can do on my end. I find myself up in the middle of the night wondering how I am going to make things change for my daughter when the change she needs is hinging on the people around her making a change.

I can’t tell you how miserable it is—waiting on other people to change.

And it’s almost impossible to make someone understand something they are choosing to ignore.
It’s impossible to ask someone to change their thinking when they are not even aware they are having such thoughts.

So while I dream of a time when the people around me make the changes needed for my daughter and all people with Down syndrome to be seen for the awesome people they are, I have to stop and ask myself: whose flag am I tarnishing with my ignorance and thoughtlessness?

Who’s very humanity is contingent on my ability to change?

Who am I standing in the way of?

Because I can sit here and point to the thousands of people standing in the way of my daughter, but if I do that then I have to stop and ask myself the same question.

Friends, who are we standing in the way of? Who is desperate to be seen as awesome but the only way that can happen is if you and I make a change?

When I ask others to join me as I fight for the changes needed for my daughter to wave her “awesome” flag free of splatters and blemishes, I am asking them to get uncomfortable, I am asking them to think differently, I am asking them to make a change.

While I stand up and at times beg for others to be the change my daughter needs, it is my hope that I too can look around me and see what kind of changes I need to make. In what ways do I need to become uncomfortable, think differently, and change so that others can wave their “awesome” flag high?

*This blog post originally appeared on the “Storyline” blog site. To see the whole article, click on this link

 

[31 for 21] ~ Joy and Pain…

October 1.
Today marks the beginning of October, which is Down Syndrome Awareness Month.
Okay, technically, in Canada, we celebrate Down Syndrome Awareness at the beginning of November, but in the States it is for the whole month of October, which we think is kinda cool, so we are jumping on board!

October 1 also marks the first day of something known as the “31 for 21” challenge.
This is my fourth year participating in this challenge, but just as a brief refresher for those of you who may not be familiar with “31 for 21”, here are the basics:

~ There are 31 days in October
~ The medical term for Down syndrome is Trisomy 21 (T21), because individuals with Down syndrome have a 3rd copy of the 21st chromosome.
~ So, for 31 days, the challenge is to blog every day, in order to raise awareness for T21.
~ Hence, “31 for 21”.

This year I’m keeping it simple. Like, really simple.

Joy and Pain.

Two words. Two themes. Two perspectives.

Much of life can be viewed through the lens of these words.
They are words that connect people, forming bonds that supersede individual circumstances and knit people together within the fabric of the larger human experience. My hope for the next 31 days is to share something each day that pertains to one of these words, and in so doing, to connect my own humble story to a stronger narrative that far exceeds the bounds of Down syndrome or disability, but rather encompasses all of humanity in one way or another.

Sometimes I forget that I am very knowledgeable when it comes to the topic of Down syndrome.
I don’t have the education to prove my knowledge. I don’t have the piece of paper or the letters behind my name.
What I do have, however, are credentials that look like this:

I debated whether or not I would participate this year. I am busy. I am tired. I am worn out. I am weary.
At the end of the day, however, I want to continue to spread awareness about Down syndrome.
At the end of the day, I desire to see perspective changes, to see new attitudes and awareness toward disability.
At the end of the day, I will continue to strive to create a world in which my son is accepted, loved, and respected.

So, let’s journey together over the next 31 days.