Inclusion Spreads Hope

Recently, one of the moms from my son’s class reached out to me for advice on how to help her friend that had just received a prenatal diagnosis of Down syndrome.  As I read the message, I got goosebumps and my heart filled with joy. I was instantly happy for this mama-to-be that I had never met and likely never will. I also felt an instant connection to her and intense feelings of empathy. I knew immediately this was another example of the positive effects of inclusion.

I had not been in this mama-to-be shoes exactly, as we found out after his birth that our son had an extra chromosome, but I’m certain I experienced many of the same emotions and concerns. I did, however, have the benefit of having had my heart captured at the first glance of my son. I know this mama-to-be does not have the benefit of feeling love before all other emotions and that is why she needs extra support and encouragement.

Nevertheless, I knew I could help the mom from my son’s class. I know what this mama and all others receiving a diagnosis of Down syndrome need most. All these lucky few mamas-to-be need a friend that will listen to their worries and validate their feelings but will also take them out shopping for adorable newborn clothing and tiny diapers. These moms need a shoulder to cry on, and also a friend that will celebrate her baby and say, “congratulations!” when he/she is born. Mamas-to-be need a friend with real-life stories of Down syndrome to balance out negative doctors and inaccurate information on the internet. They need a friend that will be understanding and also uplifting.

Hopefully this mama-to-be will have many friends that will do these things for her, but unfortunately, she may not because her other friends simply may not know how to respond. That’s why inclusion is so powerful. This mom from my son’s class knows what Down syndrome really looks like and because of my son, has a connection to it. She also has somebody to go to for additional information and advice on how to be a supportive friend.

I encouraged the mom from my son’s class to share with her friend stories about my son. I even took the opportunity to brag about my son so she could tell her friend that he can read 17 sight words, knows and participates in the Pledge of Allegiance every morning and is friends will all his classmates. I think hearing these things just might be the hope this mama-to-be needs.

Inclusion spreads hope because it is real life. It isn’t the gloomy, outdated information parents-to-be read about on the internet or, sadly, hear from their doctors.

The positive effects of inclusion aren’t always tangible, nor can they be captured in reports or studies. Sometimes they are subtle, significant and life-changing.

I recently heard a story online about a kindergartener that had a friend in her class with Down syndrome. She came to school so excited to share the news that her cousin would also be born with Ds. This girl’s perceptions had been shaped by real life; having a classmate with Down syndrome, not misinformation.

Likely, this girl’s aunt was nervous maybe even terrified to have a baby with Down syndrome. Maybe the mom-to-be had never met a person with Down syndrome. And perhaps, her doctor preceded her baby’s diagnosis with the words, “I’m sorry.” She needed a glimmer of hope. She needed her niece’s excitement. She needed to hear her real experiences in an inclusive classroom.

That little girl’s excitement provided something the Google searches on “Down syndrome,” late at night done with tear-filled eyes couldn’t. Because she was in an inclusive classroom, she could provide hope, excitement, and love for her unborn cousin. Because of inclusion, a baby that otherwise might not have been given a chance at life may now be born into a loving family that sees all of his or her potentials.

Connections like these happen because of inclusion. Inclusion connects us all and reveals our commonalities, as well as, what makes us each unique. Both should be celebrated.

Often parents and school teams look to studies about whether or not inclusion is right. Every study that has ever been done on inclusion proves it is beneficial for not only the person being included but also for the teachers and classmates. Yes…  Every.  Single.  One.  Powerful, I know!

But it is the intangibles; the real-life stories that can’t be made into statistics, the changes in perceptions that naturally happen, and the ripple effect of knowing somebody with Down syndrome that results from inclusion that is most powerful.  Experiences in an inclusive classroom connect individuals with differences, shape positive perceptions and spread hope.

I grateful that the mom from my son’s class trusted me to help her. I know that she will be the friend that the mama-to-be and future member of the “lucky few” community needs in her life right now. All of the positive support, reassurance, and hope that this mom is able to provide her friend are the result of an inclusive classroom. Inclusion is powerful.

 

 

 

 

My Son Made Me A Believer

About a year before son with Down syndrome was born my best friend and I ran a half marathon together. It was a big deal because we live in different countries and don’t often get to see each other. I was determined to help her get her personal best time; she was more concerned about enjoying our time together. She stopped to take photos during the race and all I could think was, “we just lost 20 seconds on our pace, how are we going to make it up? “ I don’t remember the time on the board when we crossed the finish line, but thanks to my friend, we have photos to remember the fun we had along the way. It is those photos, not how long it took us to finish the race, that brings me happiness; they captured the most important moments of the race, our time together.

Before my son changed my perspective, I was a self-proclaimed “realist.” I always tried to see the positive first, but the loud realist inside of me always quieted the optimist. I tended to find the worst case scenario quickly and focus on it until it became a self-fulfilling prophecy. I set personal goals and worked hard until I achieved them but few carried meaning beyond my own life. I didn’t tend to look at my place in the world for the greater impact I could have; but rather focused inward on what I could do to achieve my own personal best, for me.

My son’s life has given me more true happiness and fulfillment than any of my personal accomplishments ever brought me. I advocate for his quality of life and that brings purpose to mine. Additionally, I have been ignited with a passion to make a difference in not only my son’s life but also the lives of others in the Down syndrome community. Now, I find myself being a full-fledged believer in a world of possibilities. I would even say on certain matters, inclusion being one, I’m a rainbow, gumdrops and lollipops kind of girl. The kind of person my previous realist self would have rolled her eyes at.  I believe inclusion can change the world.

I have heard “nothing makes you happy,” more than once in my life. In those moments, I never considered myself unhappy. I was satisfied with my life, but always chasing something better. I never stopped to appreciate the journey; the finish line was all that mattered. Achieving my goals consumed all my energy and none was left for enjoying the journey.

But now, as crazy as it sounds, I actually believe that I can help to change the world. I am humbled by the opportunity to have my voice heard through my writing and hopefully be an agent for change. And that, that makes me happier than I have ever been in my life!

I catch myself dreaming of a future for my son that is fully-inclusive, where he will be celebrated and welcomed into his community with open arms. Where the school placement for all kids will be inclusive not segregated. Where all kids play on baseball teams together and celebrate each other. Where parents will celebrate the birth of a child with Down syndrome because they grew up knowing an amazing person that happened to have an extra chromosome.  I believe it can happen.

When it comes to my son and the impact of inclusion, I am an idealist; and I have never been happier. My son has given me a purpose outside of myself. I no longer chase happiness and view it as a destination. I let the happiness in little everyday moments capture my heart and fill it up.

My son has taught me patience and appreciation for the moments that make life worth living. I’ve learned that the finish line is something to celebrate, but without taking the time to savor the special moments along the way, I was missing out on everything that was most meaningful. These are the moments that will grab my heart and never let go. Moments that make my heart jump for joy are an unsolicited hug, listening to him sing “Happy birthday” at a party, and tickling him to hear the sweetest sound in the world, his joyous laugh. Without my son, I wouldn’t have appreciated little moments like these as much as I do. I would have missed out on so much happiness.

While I was writing this story, I ran across a quote by Alice Meynell. “Happiness is not a matter of events; it depends upon the tides of the mind.” I know it is my son that has shifted the tides of my mind. He has given me the happiness that I had been searching for. He changed me from a realist to a believer. He gives my life purpose.

Because of my son, I will continue to believe an inclusive world will happen. I will keep using my voice to spread rainbows and lollipops, and I will never stop advocating for the change I wish to see in the world because the future I desperately want for our all of our kids depends on it.

The Ripple Effects of Inclusion

As a kid, I did not know one person with Down syndrome, not one person. By the time I was an adult, I had had zero interactions with a person with Down syndrome. I had heard about Down syndrome, but I had no idea what it was or what it meant. My son was the first person I knew with Down syndrome.

During my son’s first week of kindergarten, I nervously went into his classroom to talk about Down syndrome and how he may do some things differently, but most importantly how he was more alike than different. Those kindergarteners showed me that day, and every day since that they see my son as a friend, plain and simple.

When kids grow up understanding difference is something to be celebrated, but that we are all more alike than different, they are less likely to fear people different from themselves. Less fear equals more acceptance and inclusion for all. Down syndrome isn’t something that prevents a meaningful life. In fact, I’d argue that Down syndrome makes life more meaningful. I know it has for my family.

Imagine this: In a hospital room, parents of a newborn baby with the most adorable smile and squishy arms and legs just received a diagnosis of Down syndrome. The father of the baby immediately recalls his friend from elementary school who also had Down syndrome. He remembers he was kind, worked hard, had the best sense of humor, and loved to make his friends laugh. The father’s heart immediately fills with joy and he tells his wife, “Our little boy is going to be great; he is something to celebrate! We are lucky to have him in our lives.” Those parents will believe in their son and raise him with high expectations and a lot of love. The boy will, in fact, be great!

This is the ripple effect of inclusion. I believe that if a peer in my son’s class has a child with Down syndrome or knows somebody that has a baby with Down syndrome, they will see that baby as capable and the gift that they are. My son is changing the future of the world just by working hard and teaching his peers that Down syndrome isn’t something to be feared. Differences are a beautiful part of life and all individuals have their own unique talents and gifts.

When we first started on our inclusion journey, we wanted inclusion for our son because we knew it was best for him. I also knew it would be a good thing for his peers, but I didn’t understand the magnitude of what my son is doing for his peers and the world. Many times this year, I have seen his classmates show kindness, empathy, and understanding. They natural slow their pace to accommodate his slower pace, they talk to him same as they do all their other friends, regardless of how he responds, and they help and include him.

Inclusion is truly a win-win. When my son started the school year, my son was unsure of his abilities. Recently, he read his sight words in front of his class, loud and clear. This accomplishment is the result of increased self-confidence, pride in his work and that he feels included in his class. The more confident individuals with Down syndrome are, the more likely they will be to engage with their community and share their full potential.

An inclusive world begins with inclusive experiences now. Inclusion creates a ripple effect that benefits not only the person being included but also shapes the perceptions of their peers now and in the future.

Moments like these

I can’t remember much of what I learned in school, I don’t know what I ate yesterday for lunch, and some days I forget my age, but some moments stay etched in my mind with perfect detail. Do you know the moments I am talking about? The moments that overtake your whole body with head-to-toe emotion and take you right back to a significant moment so you can relive it. Those are the moments I live for.

I still remember vividly tiny baby Jackson banging the floor and crying. He would get very mad about tummy time but we pushed him because when he rolled over, he would have the biggest pride-filled smile on his face. Ahhh.

Fast forward about three years to the day he came down the hall and spelled his whole name on his own.  There was that same smile filled with pride.

Then there was his pre K graduation when he walked down the “red carpet” with his fellow preK graduates smiling his signature smile of pride.

There have been many times we have been able to see Jackson’s “I’m so proud of myself” smile of accomplishment and each time it makes my heart jump for joy. Today, that smile and the reason behind it might be my favorite to date.

In front of his class, Jackson read his sight words loud and clear and all his classmates were so happy for him and cheered loudly.

Lately, we have been working extra hard at home with flashcards to practice the sight words he is working on in class. We know he knows his words but Jackson tends to want to keep what he knows a secret from the world. Maybe it’s because he has so much self-confidence he doesn’t care what others think he knows or maybe it is because he is afraid of failing and doesn’t have the self-confidence to take a chance. I think it is the latter of the two, so for him to take that chance in front of his whole class was magical.

An increase in self-confidence is one of the reasons why we continue to push him and one of the reasons we knew an inclusive placement was best for him. We know that although he doesn’t like to be pushed, he will rise to the occasion and most importantly, he will be proud of himself when he accomplishes a goal. For him to stand in front of his class with confidence and read his sight words takes the self-confidence we have wanted for him so badly. He is AMAZING and we have been proud of him from the day that he was born, but to know his self-confidence is growing and he is proud of himself too, is the best.

Even more special is knowing he has a safe, inclusive and supportive school environment. Having friends that are excited and so happy for him, as well as, a teacher and paraprofessional that celebrated his big accomplishment as if he was their own son are special.

This moment, this is the moment I have dreamed of since we started working towards an inclusive placement. I’ve heard stories like these of inclusion working so well. Of students being embraced by their peers and celebrated for their abilities. Of classmates that were truly friends. I’ve been visualizing this type of moment since we started the transition into kindergarten because I knew that if we were patient, it would happen for Jackson and it would make all the hard work worth it.

Jackson walking out of school with his teacher at pick-up smiling his “I’m proud of myself smile” and what I imagine his classroom of excited happy kids cheering for him looked like today will be one of the moments that I will be able to relive in my mind for years to come. Moments like these make it all worth it. Moments like these are what I live for.

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.

THE MAGIC INGREDIENT FOR SUCCESS

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!)