My son and I waited in line to go down a waterslide for his first time; he was excited. The employee at the top came over and picked him up. I thought she was going to measure him to make sure he was tall enough to go on the slide, but instead, she started saying, “He is special boy, he is special boy.” Then she said, “I will let you go down together one time because he is special boy.” I tried to put him on the slide on his own because I knew he could go independently, but she required us to go down together. Sadly, she saw he has Down syndrome and made assumptions about his abilities.
As I laid in bed that night, I replayed this event in my mind and tears filled my eyes. I felt like I had failed my son because I didn’t stand up for his right to go down the slide on his own, but I also didn’t completely regret the way in which I responded. I felt like I was in a no-win situation. I do wish I would have stood up for him so he could go down the slide independently and proven to that lady he could do it. But, because my son was completely content to go down with me, I was content with the way in which I responded.
The fierce, advocate mom in me wanted to say, “Yes, you are right, my son is extremely special, but you couldn’t know that just by looking at him. He is special because he has a smile that lights up any room and a laugh that is contagious. He is special because he knows when somebody he loves needs a hug. He is special because he has the best sense of humor and loves to make people laugh. He is special for a million reasons, but when a person calls him ‘special,’ just because he has Down syndrome, I don’t hear a compliment. I hear pity. Our family doesn’t need you to see our son’s diagnosis and feel sorry for him or make assumptions about his abilities. Our family needs more recognition of our son’s abilities and more inclusion. He is capable of going down this slide on his own, and he has the same right as everybody else to do it.”
But, I didn’t say any of that.
Advocating is a delicate balance of knowing when to speak up and when to take a deep breath and move on. I’m still working on that balance. I knew the waterslide lady thought she was doing the right thing. I could see her heart was in the right place even though her words and actions were so very wrong. From my son, I have learned to assume the best in people. To see a good intent and focus on that. I am still working on it, but on this day, I chose to see the best. But, I was also left ignited with an intense need to advocate stronger and harder for systematic and cultural changes.
Based on the waterslide worker’s age, I suspect she did not go to school with an individual with a different learning style than her own. I’d guess children receiving special education services were segregated from the rest of the students in the school or more likely, sent to a different “special” school altogether. Which, unfortunately, is still happening today. She and many others have been taught their whole lives that individuals like my son are different: “special.” That they have hard lives and were in need of charity and pity. That mentality is what needs to change and it starts with inclusion. Inclusion breaks down stigmas. Inclusion starts conversations and increases understanding. Inclusion celebrates everybody’s abilities.
I don’t want my son to receive special treatment. I want my son to receive fair treatment. In this case, being allowed to go down the waterslide on his own, same as the other kids. As the mom of a child with Down syndrome, I don’t need (or want) anybody’s pity or charity. Our family leads a fulfilling and happy life full of love. I don’t want special treatment or exceptions. And I certainly don’t want stranger’s outdated perceptions of his abilities. What our family does need is to feel included in our community and for our son to be given the same opportunities as other kids his age. We need people to focus on what my son can do and to not make assumptions based on his diagnosis. And if you aren’t sure of his abilities, it’s simple: assume he can do anything and everything!
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.
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!
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!
For our son’s first birthday he got a gift certificate for one of those toddler gyms. We ultimately used the gift certificate for the music class they offered because he loves music, but we also tried one of the mommy-and-me “gym” sessions. When we entered, I remember hearing a variety of mom voices, “I know you can do it, climb up.” “Ella, you just did this yesterday, you can do it.” “My son started walking when he was 10 months old, how about your son?”
I think we were both a bit overwhelmed by the slightly chaotic ambiance. My son wasn’t interested in climbing on anything or even crawling across the mat, a skill he had just learned. He was content to just watch. I encouraged him to try the fun things the place had to offer but he wasn’t interested so I backed off, put him on my lap and he simply soaked in his surroundings. I’ve learned that watching and listening is one of the ways he learns best and he was gaining a lot from just being there. This experience is a moment that would later be one of clarity for me; this was the child I needed. He teaches me to stop and enjoy the journey rather than trying to rush to the finish line.
I know, without a doubt, I would have been one of those parents that are constantly seeking the next milestone before enjoying the accomplishment of the previous. The ones that want to have the kid that can climb the highest, walk early, can master anything immediately. I would have turned parenting into a competition rather than enjoying our individual journey. I needed a break from my self-imposed pressure to pursue perfection. I needed a fresh perspective and a greater appreciation for the little joys in life. That is exactly what I got when our eldest son was born with Down syndrome. My perspective on what is truly important and meaningful has changed drastically. My definition of success had relied heavily on evaluations and standards. I didn’t know my own measure of joy, it was all dependent on what society deemed most valuable. Now I understand happiness comes from a deep appreciation of all the “little things” that make life special, genuine and full of purpose. My son taught me more in his life than I had learned in all the previous years of mine. He continues to teach me to celebrate every little step along the way and to soak in all the fun and uniqueness of our journey.
From my first year in school, I was the kid in the class that loved school and worked really hard to achieve all “A’s.” My intense desire to conform to society’s standards of achievement continued through high school, into college and adulthood as I turned to marathon running as my outlet for challenging myself to achieve. But the pressure I placed on myself caused much stress and a life filled with more worry than bliss, more pressure than happiness.
Motherhood, no doubt would have been a continuation of my desires to meet the standards and have a child that was right on track, or better yet, ahead of the developmental milestones. But there I sat at a mommy-and-me class, with my son on my lap just soaking it all in with him. WOW! What a huge, albeit subtle, accomplishment. He showed me that he didn’t have anything to prove to this audience of his peers or their moms. He would do it all on his own time and he would do it for himself-not to meet developmental milestones. In that moment, my one-year-old son had already made me a more complete, peaceful person who enjoyed just sitting, watching and listening. Sitting there silent and still at a mommy-and-me class that was filled with movement and chatter made me feel a bit anxious and off balance but also oddly at peace. At the time, I didn’t realize the significance of that moment but looking back, it was pivotal. There are still plenty of moments that I feel uneasy and anxious in social situations because our son does things his way and that way isn’t always what’s expected nor does it match up with the developmental charts but he is filled from head-to-toe with a charisma and positive energy that is unmatched and I adore that about him.
He makes me so proud because he leads a genuine life; he isn’t afraid to show his joy or go at his pace. We celebrate BIG those things in life that might be insignificant to most, including the person I was before I had him. Some times the things most worth celebrating have nothing to do with an achievement at all.
As we prepare for kindergarten, our hope is that he will build friendships and gain more independence. Academics will take a back seat to what truly matters. This former straight “A” student, has learned from my son the importance of the things in life that can’t be measured on a test. Perfect report cards, elite marathon times and a slim frame are fleeting. But, the peace and strength that comes with doing things on one’s own terms and appreciating the things that make life worth living are lasting and bring joy daily. Loving relationships, kindness, and the positive mark a person leaves on the world are the true measures of success. Thanks to my son, I am learning how to be the best version of myself and I will continue to work hard to help him to be his personal best, fully-included, and on his own terms!
The first game of the NFL season was one day after Jackson was born. My husband had gone home for a quick shower leaving Jackson and me alone for the first time. Still overwhelmed, concerned about his health issues, (minor but at the time felt like a dark cloud hanging over us that at any time could become a huge thunderstorm) and trying to understand parenthood and our new journey, I fell back what was comfortable to me, football Sunday. I turned on the Cardinals’ game on in the hospital room and held Jackson explaining it to him. Arizona Cardinals games had become my families time together. We would attend the home games and watch the away games together. At only one day old, Jackson would become a part of this tradition and watch the first game of the season with me. Soon after that day, he would have a pint-sized Cardinals jersey, beanie, and matching socks; he was then and still is the cutest fan ever!
Fast forward a bit over a year, decked out in his full Cardinals ensemble, he attended his first football game and he loved it! Amazingly, he sat through the whole game and watched the field the whole time. As he has grown, his love of football has also grown and he has become a fan. He still loves going to the games and stays fully engaged the whole time. He loves yelling “third down,” cheering, and eating popcorn. And, it was football games on TV that would be the best motivator to get him to stand on his own. Initially, I was a bit nervous to take him because he was so young and because I always get a bit anxious in situations with crowds. It’s basic math, the more people (mixed with alcohol) the greater the chance of one ignorant person saying something stupid and tearing my heart out of my chest and likely, resulting in my whole family being escorted out of the stadium by security. But at the games he is just one of the Cardinals’ fans, yelling and cheering. Ok, so he is the cutest fan there and he has gained some fans of his own. Walking on the concourse with him is a bit like escorting a celebrity. He gets a ton of smiles, some high-fives and several “look how cute he is.”
Although the pursuit of inclusion discussed in this blog focusses primarily on school inclusion, inclusion is a way of life, not a school placement. School inclusion is just one piece of the puzzle and won’t work in isolation from other aspects of life. Inclusion at home and in the community is essential. Parents know their child best and should be able to decide how much their child will be included with their typically developing peers at school. For our family, we believe including Jackson in all aspects of life now is the precursor to him engaging with his community in adulthood i.e. having a job, living independently and/or attending college, whatever makes our son most happy. We want him to grow up in the same world he will live in for the rest of his life. 321 Inclusion celebrates inclusion at all levels: home, school and in the community because all pieces work in conjunction to create a beautiful picture.
Jackson was our first born child so in addition to learning how to parent a child with Down syndrome, we were learning how to be parents in the first place. Because we didn’t have any prior parenting experience, we focused more on getting the parenting part right and less on how to parent a child with Down syndrome. Although we did research on how to help him achieve his personal best, we didn’t treat him differently than we do his younger brother. To us, Jackson wasn’t our son with Down syndrome he was just our son. Parenting him was all we knew about parenthood and for that I am grateful. We took him everywhere and he was fully included in our lives same as any other child would be. Like other parents, we took hundreds of pictures of our baby and he was the center of our universe. The full inclusion way of life easily became how we did things, without thinking about it. From birth, we have treated him the only way we knew how: fully included in all aspects of our lives so when it came time to discuss where he belonged during the school day, it only made sense to us that his school life should match up with his home life and we knew inclusion would be best for him.
Don’t get me wrong, I have had doubts about putting him in a general education classroom…lots of doubts. Even knowing in my heart it is best for him, I still question it. The battle that goes on between my heart and mind is the result of fear. My greatest fear, by far, is that the other kids will make fun of him or not include him. That’s when the thought of him being in a self-contained classroom where all of his classmates would also be delayed sounds pretty darn nice from time-to-time. But the reality is, Jackson lives in the same world as the rest of us and that world, unfortunately, includes a lot of bullies. It is impossible for me to protect him from that (as much as I’d like to live in a bubble or move to an island). So rather than worrying about how I can protect him from the world, I will focus my energy on how to best prepare him for living in it. Like in football, the offensive line can’t protect the quarterback 100% of the time so the quarterback has to work on ways to protect himself so he can stay standing long enough to throw the ball. I will protect Jackson when I can, but more importantly, I will help Jackson gain the skills necessary to thrive in this world on his own. At each step of the way, I will cheer as loudly for him as he cheers at football games. He is the biggest Arizona Cardinals fan and I am his biggest fan!
The following is a blog post I was asked to write for GiGi’s Playhouse. Networking with other parents at GiGi’s Playhouse has helped empower me to be a better mom and advocate for my son. I encourage everybody reading this blog to find his/her sources of empowerment and utilize them to fill your heart with the confidence you need to be the best parent/grandparent/sibling for your loved one. We are all enough! Become empowered and advocate on!
I remember when my son was a few weeks old and I was in the process of making phone calls to start early intervention, scheduling extra doctor’s visits and researching everything I could about Down syndrome. I was a first time mom, overwhelmed and at an emotional low. I remember saying to my husband, in tears, “I don’t know if I can do this.” I knew I could love our son (because I did; more than anything, I loved him from the moment he was born) but I didn’t feel I was adequate as a parent or person to take on the challenges and learn what I needed to know in order to help him. I did not think I was enough for this precious gift we had been given.
Nancy Gianni’s mission and vision 14 years ago when she started the first GiGi’s Playhouse, was simple but also revolutionary. It was the idea that families could be the best resources for other families navigating similar journeys and from that networking parents would become empowered to be and do the best for their child. All of the work that happens at GiGi’s programs leads to achievement which in turn changes outdated perceptions within the community, and thereby, also empowers with the community with knowledge leading to more inclusion and acceptance. At GiGi’s Playhouse, individuals attend purposeful programs where they can practice the skills they need to excel in their classrooms, jobs and the community. They and their parents become empowered and it spreads to the community. At every turn, there is empowerment happening.
For families that get the diagnosis of Trisomy 21 in the all too common grim way either prenatally or at birth, having a place that offers a warm welcome of congratulations, volunteers gooing over your baby, and photos of individuals with Down syndrome showcased and celebrated, GiGi’s Playhouse is essential. With one word, “Congratulations,” the magic of empowerment begins for families of newborns, many of whom are having their first interaction with the Down syndrome community when they walk through the doors at GiGi’s Playhouse. Taking that first step into the Down syndrome community is emotional but I have seen just one hour at GiGi’s change parents’ perspective of the journey they are on. Now that’s empowering!
I don’t think my experience of feeling like I wasn’t enough for my one month old baby is unique and that is why empowerment is so important. And the empowerment at GiGi’s Playhouse does not just happen for parents of newborns. Raising my five year old son, I am constantly empowered by the other parents I network. The other parents, my friends, are constantly empowering me to be the best mom I can. We work as a team to help, comfort and celebrate each other and our kids. I always leave my interactions with these parents with a positive perspective and a feeling that I can do this; I can be the best mom for my son. I’m empowered to face the next challenge and advocate for my son.
In addition to my own experience, I have been fortunate to see so many kids, teenagers and adults become empowered to “have a voice,” and share it, become more independent and know that they can achieve their dreams. The increased self-confidence that happens at every program at GiGi’s is a shining example of empowerment at work. GiGi’s is a place to learn and grow. It is a safe place for the participants to try new things, to succeed and to keep trying until they achieve! Empowerment and achievement go hand-in-hand; GiGi’s offers a place for both to happen.
Thank you, Nancy Gianni, for your vision and belief that our children should be celebrated and are capable of achievement. Empowerment is the single greatest tool for any parent, advocate or individual with Down syndrome and it is provided daily at GiGi’s Playhouses.
GiGi’s Playhouse is a network of Down Syndrome Achievement Centers located throughout the country. (and one location in Mexico) To learn more about the free programs offered and to find a location near you, check www.gigisplayhouse.org.
As I came around the final turn, 26 miles down .2 to go, I saw the finish line of the Boston Marathon and I started to get goosebumps. The noise of the crowd was deafening but in that final moment I couldn’t hear anything. I had tunnel vision and the finish line where one of my biggest accomplishments was about to happen. Back in my twenties, running was my passion. I would wake up at 4:30am every morning and run 10 miles on my treadmill before work. On weekends, I would do my long runs of 18-22 miles. One year, I did so much running that 80 mile weeks became the norm for me and something that I would without exception accomplish each week. The thing about running marathons is that 99% of the work isn’t done in front of a group of cheering fans on a stage like the Boston Marathon. The work is done day-in and day-out before the sun rises and after it sets. It is done while nobody is watching, without recognition, on days when I just wanted to sleep in but knew that I couldn’t because I would be letting myself down. Much of the same can be said for parenting a child with Down syndrome, the big stage being the dreaded IEP meeting.
“I am so happy with this IEP. This is the most proud I have been since finishing the Boston Marathon!” I exclaimed to my husband the day we got the final copy our son’s kindergarten IEP. With marathons, runners can’t show up to the start line without the proper preparation, hard work and dedication. Likewise, we didn’t start prepping for our IEP meeting a couple of days before. We started the process of getting our son full-inclusion at the fall parent teacher conference, 6 months before his IEP meeting.
I remember well the formal start of our process for full inclusion; it was our fall parent-teacher conference. His preschool teacher told us how well he was doing and how transitions and academics were his strengths (YES! transitions and academics! He is breaking down outdated perceptions every day) with happy tears in my eyes, I asked what he struggled with. The teacher didn’t have an answer and kept the conversation rainbows and butterflies. I knew she didn’t understand where I was coming from or why I was asking the question. So I tried again, this time more direct, “We want our son to be in a general education classroom at his home school. What can we do to prepare him to do that?” The smile on her face, as well as the two therapists in the room, turned to a serious expression that matched the new tone in her voice. We had quickly taken a turn in this meeting. I don’t remember the details of her response but I do remember her saying, there were a variety of options that the school district offered.
My husband and I left the meeting discouraged but I am so glad we had this conversation early because it was the first step to getting us all to the same vision. His school team now knew what we thought was best for our son and we knew we had some work ahead of us to get him the placement that he needed to thrive in kindergarten. It is easy to fall back on an “us” vs. “them” mentality in school meetings rather than focusing on how the “team” can work towards the same vision. An “us” vs. “them” approach was my initial reaction, but I’m glad I didn’t let those feelings overshadow the work that was needed get to the goal together, as a team. His preschool teacher would become the best advocate for our son, but had we not shared our vision with her early she couldn’t have known what we thought was best for him. Like in running, a vision (goal) is essential and guides the day-to-day work/training.
Much like running every single day to prep for a marathon, I worked every day to help our son get into the placement he deserved. Some days I would research education law or kindergarten standards, other days I reached out to other moms that had been on a similar journey and had children who were fully included in a general education classroom. From each of these moms, I learned so much and was encouraged. Those were the days that reminded me of runs where my legs felt light and my pace was quick. Those are the runs and days that are the biggest motivators to get to the coveted finish line in a race or a “perfect” IEP.
But like long runs that wore me down and left me with soreness, there were days that I would cry, because I was emotionally worn down by the challenge ahead of us. I was told it would be insurmountable and we couldn’t do it alone. There were days that I questioned what we were fighting for. Would a slower pace be better for our son? Was this all too much to ask of him? But, I would always go back to knowing in my heart that he can do it, he will do it and it was not only the best option for him, it was the only option for him to thrive, and the one that would make him most happy. Everyday, there would be another sign that an inclusive education was best for him.
For me, hardest situations are those that are out of my control. Every time that I would line up on the start line of a marathon, I would get nervous and hope to just finish. Regardless of the amount of work I had put in, things can happen. I could sprain my ankle or get leg cramps so intense I simply couldn’t walk another step and not finish after putting in so much work. I knew that like marathon running, regardless of the amount of work we put in, there was the chance that we would hear “no” from the school district and there would be nothing that we could do about it. Despite the challenges ahead of us, I knew we needed to win the little victories and dedicate the time and work required to cross that finish line. I was passionate and willing to work hard in order for my son to have the opportunity to excel in kindergarten.
Parenting a child with special needs, much like a marathon, takes doing the little things, done day-in and day-out to get to the finish line. Like the countless runs done without an audience, nobody sees the work that parents do with their child at home, on weekends when we just want to have fun but know there has to be some therapy in every day. Nobody is watching during the late night hours when research on education law takes place. People that have never traveled the journey can’t understand the overwhelming amount of responsibility a parent feels for their child’s quality of life. Successful marathons like IEPs worth framing don’t happen overnight. These grand achievements are the result of hours and hours and hours of hard work and dedication to a vision that sometimes only you can see. These achievements require a vision that others may not share and an unwavering (ok, so there is going to be some wavering from time to time) belief it will happen. I have experienced in running as well as parenting, there are doubters and sometimes that doubter is me BUT, I know if I keep my eye on the prize and keep running through those moments, I will cross that finish line.
We did, ultimately, receive a placement and IEP that pretty much matched the ideal scenario we had mapped out in our minds thanks in large part to his preschool teacher who became an advocate for our son. Although I have compared this placement and IEP to finishing the Boston Marathon, I know that this is merely the beginning of our journey and is just day one of training for another marathon. We will continue to put in the work every day knowing that there will be days, like with some runs, just finishing will be enough. We look forward to watching Jackson achieve his goals and make friends in an inclusive setting that will offer him the best opportunity to be his personal best.
My mind was a constant flow of worry, my heart overflowing with hope, excitement and pride. Tears were intent on filling my eyes but I battled to hold it together. As I walked through each classroom, I imagined my son sitting at one of the small desks. On the outside, I was just like all the other parents, here touring kindergarten classrooms and meeting the teachers but on the inside, I felt like an outsider that snuck into an event that I didn’t yet officially and may never belong at. I took a leap of faith attending because in reality I was looking at classrooms my son may never even be a part of at a school he may not go to. As the emotions inside of me battled it out, I overheard a parent ask, “Can we request that friends are in the same class?” I stopped immediately and looked at the parent who had asked the seemingly innocent question to one of the teachers. It must be hard that your biggest concern is that your child will have their friends in their class. I thought to myself sarcastically. It is in these moments that I find it difficult to relate to parents of typically developing children. They can’t understand how lucky they are to know their son/daughter will be included in a classroom at his/her home school because, of course, they would go to the school in their neighborhood. They can’t know what it is like to do hours and hours of research on education law, to work your hardest to change outdated perceptions or to challenge the placement that usually goes with my son’s diagnosis all to get him into any classroom at that school, with friends or without. They just can’t possibly understand.
About 321 Inclusion
This blog is my place to express my feelings and share my family’s experiences related to inclusion. I hope it will foster a community where like-minded, positive parents on a similar journey can connect with other parents that just “get it.” I believe parents of children with Down syndrome belong to an elite club that only us “lucky few” can understand and appreciate; a stark contrast to the feeling of being an outsider among other parents. We need each other for support and encouragement. I am thankful for the special friendships I have developed as a result of being one of the “lucky few” parents and I hope this blog will foster connections among the readers.
We look forward to sharing our journey of inclusion for our bright, funny, expressive son who happens to have Down syndrome. I am proud to say that he will be entering kindergarten this fall at his home school in a general education classroom! I am by no means an expert on inclusion but I hope to provide a parent’s perspective and share the successes and challenges in a way others can relate to. Having benefited greatly from the power of parent networking, I hope this blog will provide you with ideas or simply a place to come for reassurance and to find other parents are on a similar journey. So here we go, 3…2…1…the official start to our family’s inclusion journey is just around the corner. Kindergarten: here comes Jackson.