Another Piece of the Inclusion Puzzle: Thank You, Parents

Many pieces must all fit together in order for inclusion to work well. The school team and their willingness to provide the supports necessary immediately come to mind. Then there is a child’s desire to be in a general education classroom and how well the general education classroom fosters their ability to achieve their goals. But, an equally important piece of the puzzle, is the other kids and their parents.

Recently, there was an ignorant letter circling the internet. A parent of a “typically developing” child didn’t want her child around a developmentally delayed friend and asked the parent to keep their child away from hers.

Anytime this type of ignorance is brought to light, run through the full gamut of negative emotions including anger, fear, and sadness. Ultimately, I end up with a  pit in my stomach and more questions than usual about the true feelings of the other parents in my son’s class. I start to question how they really feel about my son being in their child’s classroom and whether or not they see his immense value. I keep this in the back of my mind and use it as a reason to build a wall around my heart.

Fortunately, my son’s classmates and their parents continue to give me many reasons to break down that wall and trust that they genuinely appreciate my son and love him for the kind, charismatic, good friend that he is. Their attitudes and what they teach their children are a piece of the inclusion puzzle I don’t ever take for granted.

This weekend we attended our first birthday party for a classmate. It was for one of my son’s good friends that always makes sure he is included. Meeting this sweet friend’s mom reminded of the truly amazing parents that do exist. Words can’t do justice to the gratitude in my heart, but I will try to convey my appreciation because all hard-working, kind parents should be recognized. I see you; and I know that your caring parenting is making the world a more safe, positive place for my son.

I am grateful to parents that are raising children who refuse to let a classmate eat alone. To the parents whose daughter always watches out for her peers and makes sure everybody is included; thank you! To the parents raising a son who asks everybody to join the game so nobody will have to stand on the sidelines alone, I salute you! For all the parents that have kids that use kind and encouraging words with their peers and never put anybody down for their differences; high five. For the parents that don’t “shhhh” their kids when they point out differences, but instead take the time to talk with their kids and teach them that our differences are what make the world an interesting and better place, you are making a positive impact. And for all parents that understand your kids are watching and model inclusive, kind behavior, job well done! Thank you for taking the time and working hard to raise kids with kind hearts and open-minds.

From a parent that has to rely heavily on the jobs that other parents are doing in order for my child to be included and celebrated for his talents; from the bottom of my heart, I thank you!

Being the parent of a child with Down syndrome can be a vulnerable and lonely place. From this place, I have developed a deep appreciation for great parenting. I have to rely on the work of other parents so my child will be given the opportunities he deserves to reach his fullest potential and that can be terrifying (especially for a control freak like me). But quality parents help to ease my nerves and give me hope for the future.

In the new year and beyond, let’s all keep working hardest at our most important job; parents. It isn’t easy, but with our attentive and kind parenting today, we are changing the world for our kids and giving them a brighter future. I promise to always teach each of my children, kindness first. After all, we are all in this together!


What a Difference a Year Makes

It’s incredible the difference a year can make. At the beginning of last year, we had no idea where Jackson would be going to school in the fall, what our journey to inclusion would look like, or whether or not Jackson would even have the opportunity to participate in a general education classroom. Just thinking about kindergarten made my palms sweat and my heart race. I felt a constant sense of helplessness regarding our inclusion journey; regardless of how much we did, there was the possibility we would hear “no” and it wouldn’t be something we could change. I would remind myself, anything worth having isn’t easy. In my mind, it’s a simple equation, hard work + perseverance + passion= success. I knew that in the case of inclusion, there are many factors in play that were out of our control and that was the hardest part.

Looking back on last year, Jackson was unsure of his abilities. Today, he exudes a sense of confidence and seeks to do more things on his own. 2017 was a year of growth. Despite some ups and downs and bumps in the road, Jackson is exactly where he needs to be: at his home school, included. It seems there is always something new to learn or work with his school team to address, but we collaborate and find solutions together.

Best of all, Jackson is thriving! Of course, he has days where his participation is down or he says “all done” several times during the school day. There are still times when he and I feel overwhelmed. But each time he is a part of a classroom or school activity that I know he wouldn’t have the opportunity to participate in otherwise, my heart fills with joy. Those are the moments Jackson enjoys the most; being a part of the school community.

We took a huge leap of faith. We listened to our guts and what Jackson had been showing us his whole life; he loves to be a part of the action. He wants to be involved. He won’t choose to be challenged but when he is, he rises to the occasion every time.


Prior to this year, we haven’t been able to put our finger on exactly what it is that makes Jackson work so hard for some people and refuse to do anything for others. We finally realized the magic ingredient that a person must possess to motivate Jackson to give his best. I can’t believe we didn’t realize it before, it was always right there in front of us the whole time: BELIEF. Anybody working with Jackson must BELIEVE in him, BELIEVE in what he can achieve and BELIEVE that he will accomplish his goals.

We are fortunate to have a team of people around Jackson that do believe in the world of possibilities that exists for him. Every day, they challenge him because they know he can do it! All that BELIEF has rubbed off on Jackson and he has started to believe more in himself. As a result, his confidence, independence, and abilities have soared. In 2018, I resolve to continue to push those boundaries for Jackson. We will more fully engage with his school family. I will stop thinking about what is out of my control and look for ways to best handle what is in our control.

Last year, I was told that I couldn’t do it alone. Basically, that I wasn’t the best advocate for my own son and that I needed to hire a formal “advocate.” Initially, those words scared me, but then they motivated me.

Through the course this year, I have realized that with additional education, the help of other parents in the Down syndrome community, research, time, dedication and a collaborative approach, I am the best advocate for Jackson. I needed to BELIEVE in myself. I have always believed in Jackson but in order to be the best mom (and advocate for him), I had to believe in myself.

And, I BELIEVE in each of you to be the best advocates for your child (until they become their own best advocates, self-advocates are the BEST!) We know our kids best and we know what they need. That’s our superpower. We can do this!

Here’s to a Happy, healthy New Year for all filled with more inclusion, goals achieved and collaboration!

Inclusion is a Family Affair

As we walked down the hall towards my son’s classroom I had butterflies in my stomach and my palms were starting to sweat. Today I was a chaperone on his first field trip and mine as a parent. I was nervous about my responsibilities, how Jackson would respond to a change in routine and all the walking and also how I would fit in with the other parents.

As I stood in the classroom with the other parents, I flashed back to last spring before we knew whether or not Jackson would be welcomed into this kindergarten classroom. My nerves now are much more in check than they were when I stepped into this kindergarten classroom for the first time, but the feelings of being an outsider are still present.

Each time I revert back to my initial feelings of being an outsider, it prevents me from moving forward on this inclusion journey. Something I would realize after today’s field trip.

Having heard some horror stories, I can’t help but worry that some of the parents of kids in his class may think Jackson doesn’t belong in their child’s classroom and that he is taking away from their child’s learning. Both are HUGE myths that Jackson and every study that was ever done on inclusion have proven wrong.  But I am a “realist” (that’s what I prefer to call myself when I’m being pessimistic) and I know that these thoughts do exist in some parent’s minds. I don’t have any reason to believe any of the parents in his class feel this way but my irrational fears are usually the loudest so I am on-guard and ready to protect Jackson from the judgment that may not even exist.

When we first got to the classroom, we walked into a conversation that fed my feeling of being an outsider. There were a limited number of slots for parents to attend the field trip so all of the interested parents were put into a lottery. The other parent chaperones were joking about how they knew that they would be the “lucky” ones that would get chosen and have to go on the field trip.

With this being my first field trip, I immediately thought, I just can’t relate. As I have written before, I seldom feel comfortable among parents of “typical” kids (even though Jackson’s brother makes me one) because often, I just can’t relate. But I knew that I owed it to Jackson to try my best to relate and be a part of his classroom, in the same way, that I am asking him to participate. I found common and was able to join the conversation.

For me, this field trip was an opportunity to peek into Jackson’s daily interactions with the other kids in his class and to evaluate how happy he was. The “realist” in me couldn’t  be entirely sure how the other kids are treating him until I saw it first-hand. Turns out in addition to witnessing Jackson’s inclusion journey, I learned something about mine.

That morning, I heard “Good morning, Jackson!” several times from little voices. My heart filled with pride as I watched Jackson complete the morning routine of his classroom which included unzipping and getting his things out of his backpack and sitting on the carpet.

On the bus ride to the farm, Jackson had a huge smile on his face and when the choir of kindergarten voices broke out into song, he joined in happily. Its little moments like this that put my mind and heart at peace, Jackson is happy and feels apart from his class.

From the start, one friend was eager to be Jackson’s partner for the day. The first activity was a train ride. He and his partner got in their barrel together and each took a turn “steering.” The smile on his face told the whole story. 

There was a lot of walking and the pace of the field trip was quick for Jackson and me but we kept up fairly well. As the day progressed, I found it easier to relate to the other parents as we all shared the stress of making sure the kids in our groups were accounted for and well-hydrated. When the field trip was coming to an end, I, like the other parents, shared a feeling of relief and the intense desire for a nap.

I understood now what the parents were talking about that morning. I had failed to realize before that they were veteran parents and had been on several field trips. I, the rookie, had no idea how exhausting being a chaperone is. I now understood entirely the love/hate relationship these veteran parents, had with going and I felt the exact same way.

When I went into Jackson’s class at the beginning of the school year to teach his classmates about him, my lesson centered around the idea that he was more like each of them than different. For them, it made sense and today, I got to see how they do think of Jackson as more alike than different. These kindergarteners get it!

I, however, realized that I am lagging behind in my thinking. I need to shift my own mindset and start practicing what I communicated to his class. I fully believe Jackson is more like his peers than different, but I have never considered myself like parents of “typically developing” kids. (even though Jackson’s brother makes me one) Rather, I focus on how my parenting journey is different.

I am holding myself and Jackson back by continuing to focus on my differences as a parent. I  admit that sometimes I feel resentful that we had to work harder to ensure our son got into a class at his home school when the other parents just filled out the registration paperwork. However, I need to stop thinking about how we got here and focus on the fact that we are all on the same team, parenting our kids to be kind classmates.

No doubt, my comfort zone is with my fellow moms of kids with Down syndrome and I am so grateful for those friendships. BUT, reflecting on this field trip, I realized I need to change my perspective. I need to participate in inclusion too, not just cheer Jackson on. I can’t just work with the school team and not try to be apart of the parents too. I can’t continue to hide behind the ways in which my parenting journey is different than the other parents in his class.  I can’t let my fears of not fitting into the world of inclusion hold me back from participating. The journey of inclusion is one we travel as a family. It is hard work and pushes us outside of our comfort zone. It’s not easy, but it is SO worth it!

Jackson continues to lead the way, working hard and participating. Now, it’s time for me to step up, find my confidence and participate alongside him. After all, our family is more alike than different.

Our Inclusion Dreams Are Starting to Become a Reality

Today I had the opportunity to volunteer in my son’s classroom. This was my third time in the classroom and each time I am nervous to go (apparently kindergarteners scare me) but I’m so grateful when I leave. Seriously, kindergarteners are the best therapists in the world!

I was able to witness first-hand inclusion working for our son. He was an equal and valued part of his classroom. 

It was like seeing my dreams for my son’s kindergarten experience played out in real life. My heart was filled with joy!

Any of you that follow this blog know this has not always been the case. At the beginning of the school year, I found myself caught in a constant rainstorm just hoping for a rainbow to magically appear.  I was in a constant state of bracing myself for the next storm without the time or energy to dream about the future. But lately, thanks to one key change, our days have been full of sunshine and no rain. Rather than being so weighed down by the stress of what the daily report would say, our son’s successes have lighted my mind. I have even allowed myself to dream BIG thoughts of inclusion working for him well into the future.

Now each day at pick-up we bust into his backpack like it is Christmas morning, looking for the gifts of the day. Finished work, notes from the teacher that are positive and include words we have dreamed of hearing like, “participated,” “laughed,” and “knew.” He is doing it! He is a part of a kindergarten classroom with friends that engage in conversation with him; want to play with him and where he is celebrated!

One day just prior to pick-up, his class was walking back from P.E. and our son was leading the line. All of the other kids naturally slowed their pace and walked behind him content to let him lead, at his pace. My heart burst. This is inclusion. He has the power to be himself and the other kids are becoming kinder and more patient (without even realizing it). But, the beauty of it all is how naturally it happens. The kids adjust to his slower pace without giving it a second thought because he is a valued member of their class. Everybody benefits from an inclusive classroom.

I am ashamed to admit that in the first few weeks of school I would catch myself thinking of ways to help our son to “fit” into his classroom. That isn’t inclusion. Inclusion is making his classroom the best for him and his classmates so they all can succeed together. Inclusion is our son having the power to be himself and have meaningful experiences that will increase his confidence and help prepare him for the future; to live in the one world we all share.

Inclusion has been an investment. It requires a lot of time, knowledge and energy to ensure our son has all the resources he needs to succeed. It requires knowing what is best for him and not settling for anything less.  But in return, there are days like today when I had the privilege of watching my dreams play out in real life. I got share my gratitude by writing an email to the principal just to say, “Thank you,” and praise the work of her team.

There is always going to be bad days, more work to be done, and improvements that can be made to make the inclusion more valuable, but days like today, feel pretty darn good.

If you feel like you are caught in a rainstorm right now, I’ve been there too.  I understand the pressure you feel to do and be the best for your child. I understand the anxiety that comes with each day and the feeling that you are failing your child when things aren’t working out. I’ve been there, and I’m sure I will be there again a million times more. It’s hard and it’s tiring, but stay strong, stay confident and never give up on your child or your vision of what the future holds. Our kids WILL achieve their goals!

Life Under a Microscope

Quick survey. Do you like talking about your weaknesses? Nobody? How about when other people constantly analyze your every move? Silly question, right? Or worse yet, how about your child’s weaknesses being the topic of conversation at meetings and magnified constantly? Doesn’t sound like something any parent should have to endure, right? Well, any parent that has had their child evaluated for services or been in an IEP meeting can relate. It has always felt like Jackson lives his life under a microscope. At an IEP meeting recently, I was reminded several times about the dreaded microscope that magnifies and distorts. Jackson will never escape his every action and personality trait being over-analyzed and connected to his diagnosis.

Everybody has their strengths and weaknesses but most of us don’t have our weaknesses magnified, brought to the attention of teams of specialists and tracked with data. It’s human nature to focus on our individual strengths while working on our weaknesses behind the scenes; we never lead with our weaknesses. As a parent of a child with Down syndrome, my son’s weaknesses are always discussed. And then there are parts of his personality that are talked about as if they are a weakness but in reality are just part of who he is.

Jackson happens to be very introverted until he feels comfortable. If he did not have Down syndrome, I bet he would be considered shy like I’m sure several kids in his class. Instead, Jackson being shy can be perceived by people that don’t know him, as he can’t talk, he lives in his own world and he isn’t social. None of which are true, by the way.

You might have heard the stereotype that individuals with Down syndrome are always happy. Jackson is a happy boy, but he is not always happy. (Nor are any of the individuals with Down syndrome that I know) He has a full range of emotions that include: frustration, being overwhelmed, and anger. Those emotions are brought on by his environment, stress or tiredness. He, like the rest of us, should be allowed to have a bad minute, hour or day.

Raising a son with Down syndrome feels like a constant tug-of-war. The world focuses on and dissects his weaknesses and we magnify and celebrate his strengths.  

Don’t get me wrong, I understand evaluations are necessary and weaknesses must be discussed, but life under the dreaded microscope can be daunting.

One of my favorite quotes is from Alvin Price, “Parents need to fill a child’s bucket of self-esteem so high that the rest of the world can’t poke enough holes to drain it dry.” This is a part of my job as a Mom that I take very seriously. For our kids with Down syndrome, I think it is even more crucial because they are much more susceptible to people and situations that make holes in their buckets.

We know Jackson is delayed, but we choose to focus on all the amazing things he accomplishes. Every day we take advantage of the many opportunities to fill his bucket of self-esteem. We will continue to put his successes under our microscope and focus on those!




A Very Special “Happy Birthday” Song

This school year has been a rollercoaster ride; scary, exhilarating, and there have been moments I’ve felt like I was going to puke. But at the end of this school year, as with every rollercoaster I’ve ever ridden, I will appreciate the ride, feel a sense of pride for accomplishing it and, I won’t be as scared for our next rollercoaster ride (1st grade)

Last week we had some low moments. The lowest of which was a comment from one of the individuals that work with Jackson. She said, “Jackson is around the other kids, he isn’t with them.” Those words still sting as I type them, but hearing them for the first time it felt like I had been stabbed in the heart. I anticipate the joyful day when I hear about one of his friends at school and hope and pray for friends that will be with him for the rest of his life. Just because Jackson is shy and content to play on his own, that does not mean he does not know what is going on around him. And just because Jackson talks less than other kids, doesn’t mean he isn’t listening. In fact, Jackson is the best judge of character I have ever met. He also has a keen awareness of non-verbal communication and tone of voice.

As with other moments on this journey, our rain storm this week was followed by a rainbow. Jackson, along with other kids that participate in programs at GiGi’s and would later use the toys, was invited to GiGi’s Playhouse to accept the gifts that a seven-year-old girl was donating. She had asked her guests at her birthday party to bring gifts for the Playhouse instead of birthday gifts for herself. Just being a part of this event was magical. She was so generous at such a young age.

Of course, pictures of this sweet moment were a must. All the kids and the young girl were on the stage with the beautiful blue gift bags filled with toys and games that would be donated to the Playhouse. I was a bit nervous because Jackson loves to unwrap gift bags but, I stepped away and just watched. I wish I was better about having my camera at the ready, but I seldom do, and this was no exception so I wasn’t actively involved in taking photos. (Thanks to another mom for capturing the sweet moment) I will admit, I was a bit of a stage mom telling Jackson to “say cheese.” After a few minutes of photo-taking, the most special moment happened.

As cameras were still going, Jackson spontaneously turned around to the girl that had brought the gifts and confidently started singing “Happy Birthday” directly to her.

Singing “Happy Birthday”

In the midst of all the hoopla over the gifts and getting the perfect photo, Jackson brought it all back to what was most important, wishing this generous girl a happy birthday.

We weren’t there to celebrate the toys or for photos. We were there to celebrate this girl who was so generous to donate all of her birthday presents. Jackson understood that perfectly and brought the focus to her.

Reliving the moment back in my mind, my heart bursts with pride at how Jackson never once turned around during the “Happy Birthday” song. He wasn’t putting on a performance. He was genuinely wishing his new friend a happy birthday. He understood fully why we were there and was reminding all of the adults that got caught up in taking photos and talking about all the amazing gifts of the real reason. And in true Jackson fashion, as he has done before, he was showing me that inclusion is working for him. He is building his confidence and independence to participate fully in his life.  And, it was as if he knew what had been said of him earlier that week and he was trying to heal my heart. I could not be more proud of Jackson for his many accomplishments, but most importantly for his heart of pure gold! I love having a front row seat to watch his confidence and independence grow. (and to prove all those doubters out there wrong!)

You Are One of The Lucky Few Whose Life is Better With Your Child If:

In your child’s eyes, you see a world of possibilities, not a diagnosis.
You wish things were easier for your child but,
Wouldn’t change one single thing about them.
You overlook weaknesses and celebrate successes, big and small!
Negative remarks from an IEP meeting replay in your head and rip your heart apart, piece by piece.
You hold back tears as teams of specialist discuss your child’s weaknesses, but refuse to stay silent because,
You are your child’s voice, a passionate advocate, and their biggest cheerleader!
You constantly doubt yourself and the decisions you make for your child but,
You are strong, confident, assertive and refuse nothing less than the best for your child.
You’d do anything to see your child smile,
And wish you could take away all the ignorance in this cruel world.
Your child has made you a more caring, open-minded and accepting person.
You constantly second-guess your words or actions on behalf of your child and
Ask yourself daily, “what more can I do to help my child?”
You want your child to have the high quality of life they deserve so badly it hurts.
You visualize the best case scenario but,
Prepare for the worst possible outcome.
Your heart bursts with joy with every spontaneous hug or kiss.
To your ears, you child’s voice is the sweetest sound in the world and,
You waited longer or are still waiting to hear their first word.
Your child says everything without saying a single word.
You have experienced higher highs and lower lows than other parents.
You know you are one of the lucky few,
and you know that without a doubt that your life is better with your child.


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!