Our Inclusion Journey: One Month Update

We are almost one month into full-inclusion kindergarten and to be honest, it’s been tough.  I know the mission of 321 Inclusion is to share the positive pursuit of inclusion and I always try to keep the blog inspiring and uplifting. And, I absolutely still believe in my heart that inclusion is best for my son regardless of how hard it gets. BUT, I also have the intention of keeping this blog honest and real so it’s relatable and hopefully inspiring. So here goes, our one month update…

These first few weeks of school have been one of the most stressful, emotionally and physically exhausting times in my life. When you are advocating for your child’s quality of life, not only now, but in the future, it gets intense quick and it can over shadow the joys of the kindergarten experience. I truly believe what happens now, will help Jackson to gain the confidence necessary to be his personal best and most importantly lead a happy and fulfilling life. But no pressure, right? Enter giant stress ball! Dun, Dun, Dun…

The mornings go quickly between the medicine that needs to be taken, sensory input that needs to happen, constant reminders to keep eating breakfast, and some times a wrestling match to get clothes on one or both boys. But those moments are in my control and are not nearly as stressful as drop-off when I have to leave Jackson at school, trusting that others will pursue what is in his best interest and his IEP will be followed.  And then there’s the daily communication log. Sometimes I question whether or not I even want to know about the day. Was asking for a communication log a bad idea? No. Of course, I do want and need to know. I have to know what is going on so we can celebrate Jackson for his successes and also be prepared to deal with the challenges. But, after one month of inclusive kindergarten, I can honestly say, I don’t know how I will possibly handle this whole year let alone the additional 11+years after.

I am proud to say Jackson is doing well in many areas and there has been only one unexpected challenge so far this year. Clearly, he is handling this transition better than I am. I obsess over the negative parts of the daily communication and desperately try to fix the challenges because I want so badly for inclusion to work for Jackson. As a family, we are in this for the long-haul but I can’t be so sure the school is, so challenges scare me. It’s like we are on a game show and the clock is ticking down and if we don’t come up with the right answers we will run out of time and lose the game.  I fear, we will lose inclusion. The thing is, we don’t know how much time we have left or if the school is even using clock at all but we have to be prepared for both.

The feeling that no matter how much I do or how hard I work, it will never be enough has been the most daunting part of this journey so far.

Logically, I know there is only so much I can do, but that is hard for me to accept. Maybe much of the self-induced stress isn’t necessary, but it’s in my personality to obsess and worry. Maybe I’m placing too much value on an inclusive education to get us to the end goal of Jackson leading an independent, fulfilling and happy life? I have so many self-doubting questions that run through my head each day.

Today, I found myself marking on our calendar the “no school” or “half-day” school days through the end of the year. It sounds silly, but for about 10 minutes, my stress levels went down looking at all the days off. Another way I deal with stress is reading motivational quotes. One that resonates with me in regards to this journey is, “Two of the most powerful words you can hear someone say are ‘me too’.”- Rob Bell.  As a mom of an awesome kid rocking an extra chromosome, it is those “me too” moments that have had the most calming effect on me. Parenting a child with Down syndrome can feel isolating and lonely but walking the path with other parents that understand your journey helps.  The outpouring of support that I have received from other moms has been so uplifting and I hope I can do the same for other moms through my writing. We are not alone. Membership into the Down syndrome community has been an unexpected gift that we were given the day Jackson was born and as a result, I have met many inspiring individuals.

One friend that I have shared many “me too” moments with and is one of the best moms I know, recently tagged me in a photo that read, “Just in case nobody told you today, you are an amazing mom.” It came after a day filled with doubt, frustration, and tears. I needed it then and I would bet if you are reading this, you might need it now or at some point in the future. So to all you rock star moms out there working 24/7 to do and be the best for your child, I say to you, “Just in case nobody told you today, you are an amazing mom!”  You are an AMAZING mom! You are doing enough and you are the best advocate for your child. Anytime you need a reminder, come re-read this or contact me and I will make sure you remember how amazing you truly are!

What Kindergartners Can Teach The World

Our first full week of kindergarten brought with it some growing pains as Jackson is still working to transition from his preschool day (2.5 hours) to his kindergarten schedule (6 hours) Yes, this is a challenge for any student but for a student with Down syndrome that is already working so much harder during the school day, the transition is even more of a challenge.  Along with the constant stress and worry about school, there were news stories that ripped my heart out.  Iceland is using prenatal testing to eradicate all births of babies with Down syndrome and other countries are following their lead. One day these countries will not have a single individual with Down syndrome in their country. Let that sink in, they are seeking to eliminate an entire group of people based on preconceived notions of worth.  It is out-dated perceptions, that by the way, hard-working self-advocates are proving false with every accomplishment, that are destroying future lives. These medical “advancements” that make it possible to detect Down syndrome earlier in pregnancies are leading us down a slippery slope. What’s next? Where does it end? And how can a test possibly predict a future or determine worth? It can’t! Compassion, empathy, and determination are characteristics that are often associated with individuals with Down syndrome. I think we all can agree, the world needs more individuals that embody these characteristics, not less.

Being a mom of a son with Down syndrome, headlines like these slap me in the face and stab me in the heart with the reality that there are millions of people in this world that view my son as unworthy of life, love or happiness. He and others like him are seen as a burden to society without anything to contribute. These ignorant opinions are out there and it is always so heartbreaking, but last week featured countless headlines celebrating the elimination of an entire group of people that are near and dear to my heart. I knew I needed to make my voice heard. You can read my response here.

The Cast of Born This Way is full of confidence and sharing their talents with the world.

Individuals with Down syndrome have the potential to do the same things we all do but they need resources and support to succeed. Every day these individuals are making valuable contributions to society and living full, productive and happy lives. Inclusion builds in individuals, like Jackson, confidence, independence and provides opportunities for meaningful experiences and relationships. The more confident individuals with Down syndrome are, the more likely they will be to engage with their community and share their full potential.

Secondly, inclusion teaches the other kids in the classroom that difference is ok, differences are something to be celebrated but in reality, individuals with Down syndrome are more alike than different.  When kids grow up understanding that, they are less likely to fear Down syndrome in adulthood.  And less fear equals more acceptance and inclusion.  Down syndrome isn’t something that prevents a meaningful life. In fact, it has brought meaning and purpose to my life. Individuals with Down syndrome should be celebrated and valued.

Needless to say, it had already been a stormy week but the rainbow was just around the corner. I was scheduled to give a short presentation to Jackson’s class about him. What happened that morning was the most vibrant rainbow after the rain showers of that first week of school.  My experience in his kindergarten classroom changed not only my outlook on this school year but also in the world and the future.  I needed this morning in a class of kindergarteners to find my hope for the future and re-energize me.

I read Giraffes Can’t Dance and talked a bit about Jackson and ultimately gave the message that we all have similarities and differences but we all do things in our own beautiful way. The reason I was there (I thought) was to help the kids understand Jackson better, but I was the one that got the most out of my time in his classroom. Right before I spoke, the class did a good morning activity that nearly left me in tears. It was in that moment that I saw the purity of the hearts in that room. This was exactly where I wanted Jackson to be. They would help him and he would open hearts and minds. Even though I have spoken about Down syndrome around 20 times, I was so nervous that my hands were shaking. My favorite part was when I hesitantly asked if there were any questions and a boy shot his hand right up. I called on him and he asked,

“What other things does Jackson like to do with his family?”

I was relieved and humbled. To these kids, Down syndrome wasn’t a big deal. Jackson was just another friend in their classroom. Kids get it. This was happening at the same time that countries are striving to eliminate all individuals with Down syndrome because of fear and ignorance. Adults are leading with ignorance and kids are lead with open hearts and open minds. Inclusion gives kids the opportunity to see first-hand that Down syndrome isn’t something to be afraid of.  Rather, it is just one part of who their new friend, Jackson, is.  This is a valuable lesson that they will carry into adulthood and perhaps one day one of Jackson’s classmates will celebrate their own child who happens to have an extra chromosome.

After a challenging week, I needed these kids to help me see the goodness in the world. I am so grateful to have had the opportunity to experience their pure hearts. I am filled with hope for this school year and for the future generations who will hopefully lead us all towards a kinder world where everybody will be included and celebrated for what makes them unique. We all could learn a lot from a room full of kindergartners!

 

 

 

 

When Full Inclusion Feels Like a Storm, Focus on Finding the Rainbows

When we got to school on the first day of kindergarten, my nerves were intense. Like constantly on the verge of tears, intense.  There was a storm of emotions brewing inside of me. The clouds were dark and ready to open up with a down pour at any moment, leaving me sobbing uncontrollably. These emotions would remain at bay and merely taunt me with the occasional sprinkle, tear-filled eyes. I tried desperately to keep it together and stay strong for Jackson (and I also hate to cry).  Spoiler Alert: Jackson would calm my fears.

Jackson seemed unsure he wanted to be at school and it took some coaxing to get him through the doors. The more he hesitated, the more nervous I got and the more nervous I got, the more he hesitated. It was a vicious cycle that had to end and one word did just that. “Playground.” I said to Jackson, “let’s go find the playground.” That was all he needed to hear. He walked (like he owned the place) down the hallway and through the door to the playground.  He saw a ladder and immediately climbed up it.  I had never seen him climb that well before and was in awe. It was like all of his physical therapy sessions had culminated in this moment. He wasn’t hesitant to join in. He knew he belonged here. He didn’t care who was looking at him, he was ready to participate. He told me loud and clear, without saying a word, “I’ve got this Mommy.” 

As I stood back, beaming with pride, a feeling of calm came over me. I knew in that moment, he does, in fact, have this. I took his lead and noticed my self-confidence rose as well. I was no longer on the defensive trying to prove my son belongs here…I belong here. Instead, I was captivated by him, my son who wasn’t afraid. He sucked me into his calm world and I was memorized. He was proud of himself and happy to be on the playground with his peers and I was so proud of him that everything else faded into the background. I had tunnel vision on Jackson and stayed back to let him interact on his own. It was like I was a spectator watching my son grow-up right before my eyes. This was his story and my role in it was watching from the sidelines, cheering him on. In the classroom, I knew I was fully exposed as the mom of the child with Down syndrome but I didn’t feel the heat of eyes on my son and I like I had feared.  I was too busy being Jackson’s proud mom and he is all I could focus on. Beaming with pride, the smile never left my face as he sat with his peers on his square on the carpet, doing exactly what was asked same as the other children. He was doing for me what nobody else in the world could; he was erasing the doubt in my mind and ease my nerves. He’s got this!

That morning, I had woken up early with my mind racing so I wrote down my thoughts into what I thought would be a blog about how our “bubble was about to burst.”  I wrote about how this was the end of the safe, happy life we had been leading. How long gone were the days of people telling us how cute Jackson is, teachers that would hug him, or kids that wouldn’t questions why he might not talk as much or can be hard to understand.  Gone was our choice to live in the naïve world where we only focused on what Jackson could do, not as much on the ways in which he is delayed.  As I wrote, I continued describing the bubble we have been living in these last five years filled with happiness, pride, and love…you know all rainbows and butterflies. Somehow, I forgot about the work and struggle that we had endured in those five years and in that moment I only remembered the positive. I was determined to describe a vast contrast to the scary world we were about to enter when we step into that school today. Did I really imagine our past was all light and the future would be so dark? How could that be right, wasn’t the best yet to come? I wrote about how I felt like our lives would always be under a microscope and people would be waiting for Jackson to make a mistake so they could add it to a list and use it against us at some point. 

I’ll admit it; that morning was full of anxiety and doubt. (I know, that isn’t hard to figure out) I have a talent for creating in my mind the worst case scenario. It’s funny because I also constantly find myself visualizing the last day of kindergarten when Jackson will be full of confidence, independence with increased speech that he is using to talk with his new friends.  Fortunately, after being at school with Jackson that first morning, I didn’t feel compelled to finish the blog I had started. My thoughts on this year changed. I realized although the world we were about to enter was much different than the safety pre school provided; there was still plenty of love because to know Jackson is to love him.  How could I have forgotten the constant in both scenarios is Jackson and he will succeed on his own accord? Once again, I was the student and Jackson the teacher. He taught me a lesson that morning when he climbed right up onto the playground with confidence that reminded me he’s got this!

Although our world is different now that we are in what can feel like a storm, full-inclusion, there were certainly moments on the first day of school that reminded me there will still be plenty of rainbows along the way. Jackson is confident in himself and he is going to thrive! He is ready to take the huge leap into kindergarten. Yes, we will have to endure some cloudy days and some rain showers, maybe even downpours but those will all lead to rainbows. Rainbows: the magic that happens after enduring the storms. Without the extra work it takes to accomplish every milestone, without the days of self-doubt and low confidence, and without criticism, we would not appreciate the beautiful moments of growth, increased independence or friendship that this year has in store for Jackson.  Rainbows are one of the most beautiful wonders of nature. Their beauty is a reminder to keep pushing through the storm because there is something special waiting. For anything that is worth it, in the end, isn’t easy. This journey won’t be easy (it is already hard) but it will without a doubt be worth it (and full of rainbows too) Jackson’s got this!

 

 

Thoughts As Kindergarten Approaches

Yesterday was our first “practice day” for completing our morning routine and getting to school on time.  On the drive over, I felt weirdly at ease. I was so excited and thinking about what a great school year this will be that I didn’t feel even the slightest tinge of nerves. The logical part of my brain has partnered with my heart and are currently winning the battle with the “creative” part of my brain that can draw up some concerning “what if” scenarios. For our practice run, we broke out his brand new Arizona Cardinals backpack for the first time and it was the final piece that made everything click for Jackson. He smiled and was excited when we got there on as we walked up to the kindergarten entrance.  On the way home, he said, “I want school today” and I said to myself, “we are going to be fine.”

With school starting in one week (YIKES!) here are some of the worries  (no wait, positive vibes only) let’s say, “thoughts” instead, I have about my son starting kindergarten in a general education classroom.

What if he doesn’t click with his teacher and/or paraprofessional?

I understand this isn’t a concern unique to me and other parents of a child with Down syndrome. All parents, especially those of kindergarteners, want their child to love their first elementary school teacher.  I still remember my kindergarten teacher, Mrs. Brewer. She was the stereotypical kindergarten teacher with a soft, cheerful voice, reassuring smile and positivity oozing out of her head-to-toe. I desperately want Jackson to click with his teacher and para but not just because that makes for a happier kindergarten year and warm, fuzzy memories, but because it is necessary for him to succeed.  For us, the “click” is imperative because with it, he will work super hard for that person and he will accomplish goals left and right. Without it, things will not go as smoothly.

Will his teacher want to have him in her classroom?

I believe the vast majority of kindergarten teachers truly want to be there every day to help shape young minds (and hearts) because let’s be honest dealing with a room of energetic 5-year-olds all day CANNOT be easy! Beyond wanting to be there each day and bringing a positive energy, we need Jackson’s teacher to want to have him (and his para) in her classroom.  I understand that having an inclusive classroom carries complexities and extra work that would not otherwise be present. My hope is that he will have a teacher that will see past his diagnosis straight into his heart, wonderful sense of humor and intelligent mind. I hope for a teacher that will be excited by the world of possibilities for not only Jackson but also the rest of the students too.  I hope she is motivated by his potential to grow academically and personally and truly includes him in all classroom activities. I hope she also realizes that the way she treats him is a model for her students to follow. The more she treats Jackson like the rest of the students in her classroom, the more the other students will treat him same as all their other classmates.

If his teacher doesn’t wholeheartedly believe that Jackson is an asset to her classroom and want to learn from him, I worry how well this placement will work. Will she be too easy on him and turn him into a class mascot that doesn’t have to play by the rules and won’t meet his goals?  Or, will she be too hard on him and expect that he complete the work without the necessary supports and modifications to the curriculum forcing him to shut down completely.  Will her expectations help to push him towards his greatest potential or make him complacent?  I am grateful for all the teachers that see the ability in ALL their students and understand the importance of full-inclusion; I hope Jackson will have one of these caring individuals as his teacher.

How will his classmates respond to him?

In preschool, Jackson had a friend that adored him. She would run to the car every day to give him a hug and take his hand to walk with him into school.  During playdates, I’ve watched the two of them have full conversations, Jackson is mostly the listening side of the conversation 🙂 but he is engaged and I can see in his eyes that his friend make him happy and confident. I hope more than anything that Jackson will have many classmates this year that will want to be his friend. Not a mommy figure to him or a kid to whom they think they should be nice but don’t really include. I hope for kids that truly want to be his friends because they realize how awesome he is, real friends! But more than whether or not he will have real friendships, I worry that his classmates will make fun of him. But, having witnessed the pure eyes with which his pre school classmates saw him, I am optimistic he will be surrounded by caring classmates. I know having Jackson in their classroom will help them to be more accepting and understanding of all individuals. My hope is that Jackson will share many years of elementary school with his kindergarten classmates and they will always just think of him as Jackson, a great friend who is really fun to be around.

All the standard kindergarten worries and more

I understand kindergarten is a BIG deal and it is hard for almost all parents. For me, and other parents of a child with Down syndrome that I’ve talked to, our worries extend far past where most parents stop stressing. Like an ocean at high-tide countless waves of worry flow into our minds. I like to joke that the “Top 5 List of Worries” other parents have likely wouldn’t even make the “Top 20 List of Worries” that a parent of a child with Down syndrome has. For example, when it comes to lunch, my immediate concern is not will Jackson have a friend to sit with him in the cafeteria (I, of course, hope he does) but when I think about lunch my heart races and my mind fills with many “what if” scenarios like: “what if” he won’t walk all the way to the cafeteria, “what if” he can’t get his lunch box open, “what if” he doesn’t have enough time to finish his lunch (eating quickly has never been Jackson’s way), “what if” he won’t sit the whole lunch period. I could go on and on with other scenarios that play out in my mind daily like will he be safe on the playground, all things related to the potty, how will he respond to the lockdown and fire drills and what would happen in the case of a real emergency? I’ll stop there but I think you get the picture; the worries of a parent of a child with Down syndrome are far more basic and more complex all at the same time.

This is a BIG year!

I worry, of course, how could a chronic worrier not worry about the biggest event to-date in her child’s life. But, the many worries I’ve had about kindergarten have been hushed on several occasions by a heart that knows he is going to grow so much this year and hopefully, love school!

Kindergarten ready

My excitement outweighs my concern. Thinking about the opportunity for him to grow academically and personally outweighs my worries about whether or not he will stay on task and do his work every day. Kindergarten will without a doubt be a year where he talks more, gains more independence and most importantly more self-confidence. I know he will thrive in an environment where he is fully included and valued for the wonderful things he brings. I hope he will come out of his kindergarten year with friendships that will last through his years in elementary school and beyond. I hope he feels a part of the class and is free to express himself. There will be bumps in the road but that is nothing new for us, we can get over bumps, we are used to 4-wheeling through life. So bring on kindergarten, we are ready!