Inclusion – Coffee and Inclusion

Tag: Inclusion

Raising Expectations: When Alex Performed in a Dance Competition

Alex loves a stage. He enjoys performing, he adores the attention, and he can usually find a willing audience. When my daughter joined the competition team at her dance studio, Alex was eager to follow suit. But, the company program is audition based and requires an intense rehearsal schedule, and Alex simply doesn’t have the stamina to participate in that type of program.

We are so fortunate to have a wonderful dance studio and a director who believes in inclusion. Realizing that there are students who aren’t quite ready to compete at the company level, yet have a desire to experience some of the privileges that come with company membership, she introduced an Ensemble Company. Dancers in this company are not required to audition, and they take two classes per week and learn a performance piece, which is performed at one competition in the season. To compare, dancers in our studio’s company program take at least three classes per week (and often many more!) and compete in 3-5 competitions throughout the season). I was especially excited to learn about this opportunity; I felt like Alex could definitely handle that commitment.

But, being the over thinker that I am, I decided to speak with the director before signing Alex up for the program. I opened with “Do you think this would be appropriate for Alex?” As much as he loves to dance, he has noticeable differences. His low muscle tone makes it nearly impossible for him to point his toes, and he’s typically a second or so behind his fellow dancers. I was worried that maybe I was just too excited to him to participate, and I wanted to be realistic. The director, however, didn’t miss a beat. “I can’t see any reason why Alex couldn’t do this,” she quickly responded after my initial question. That was it. I figured that if she wasn’t worried about it, then I definitely shouldn’t be. Sometimes, even our kids’ biggest advocates need reassurance from others in our communities, and she definitely provided this for me that day.

Alex became a proud member of the inaugural Ensemble Company at his dance studio. He learned a fun jazz piece, and he worked really hard. Parents in our dance studio are invited to record their dancers’ progress at the end of rehearsals, in order to facilitate practice at home. This is such a huge asset for my visual learner! I text those videos to him, and he watches them, over and over, until his choreography is memorized. His teacher has commented that Alex is a student on whom she can always rely on knowing his choreography. Before we knew it, it was April and time for the Ensemble Company to join the other company dancers from our studio at competition.

I think I was more nervous than my dancers. I pride myself on being a low-key dance mom; I’m there to pay the bill and offer encouragement, but everything else is on them. But, knowing that Alex was going to be on stage, dancing in front of so many people who don’t get to see how hard he works, terrified me. I considered writing a letter and asking the studio director to send it to the competition organizers, to give the judges a heads up about Alex and his Down syndrome. I just didn’t want them to be mean in their comments; I didn’t want to risk killing his excitement for dance because a stranger too harshly judged him. After a lot of thought, and more reassurance from our studio’s director that it would all be just fine, I let it go. In the end, I realized that I didn’t want them to set their expectations too low, before even having a chance to see the performance.

Alex was so proud that day to spend time with all of the company dancers from our studio, and to cheer them on in their performances. Eventually, it was his group’s turn, and he received tremendous support from his dance friends. They showed him just as much enthusiasm as he’d shown them, and it was fantastic. I nervously stood in the audience (there was no way I could sit still in a chair!) and watched as he took the stage. Once the music started, and he began performing his choreography, the crowd began to cheer for him. I will never forget the moment he realized they were cheering for him and his group; his whole face lit up.

While their performance was amazing, and it was so fun to hear their scores, one of the best moments came as we were preparing to leave the competition for the day. We were walking through the building, on our way to pack up to leave, and Alex was carrying his award. Still in his costume and beaming from his latest accomplishment, Al was stopped by another dancer at the competition. She gave him a big hug, exclaiming “You did a great job!” She then quickly went on her way, and I asked Alex if he knew her from school. He had no idea who she was. How remarkable, in such a competitive environment, for another young dancer to stop and offer encouragement to Alex!

Advocacy can truly be absolutely exhausting; ensuring that Alex has every opportunity he deserves as he grows up is a lot of work. As tiring as it can be, though, these little moments of pure awesomeness really make it worth all the stress. Not only are these experiences good for Alex and our family, they are also great for everyone else who gets to witness them. We are raising awareness that people with Down syndrome are capable of so much, and in turn, we are raising expectations. These instances are exactly why inclusion matters.

Alex is looking forward to starting the new dance season soon, where he’ll once again be a member of the Ensemble Company. We can’t wait to see him shine, both on the stage and off.

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When Kindness Isn’t Enough

In our current culture, we cannot underestimate the importance of being kind. “Kind Is the New Cool” is the motto that my 11-year-old daughter has adopted in her advocacy efforts, and I hear myself constantly reminding all three of my kids that kindness counts.

But for my teenage son with Down syndrome, sometimes kindness just isn’t enough.

Alex is a fortunate kid, in that he has many acquaintances at school and in our community. He receives plenty of high fives in the school hallways, and he hears many enthusiastic “hellos” when he passes a familiar face in the grocery store. He is constantly met with kindness, and for that, we are very grateful.

While we teach our children to be kind, how often are we teaching them to actually be a friend? To invite a peer to hang out after school, or join their “friend group” for ice cream? To respectfully speak to their peers with dignity? Not long ago, we ran into a schoolmate while we were out running errands. This young person cheerfully greeted my daughter, and then also spoke to Alex. With my daughter, she used her typical tone of voice, but with my son, she spoke in a high-pitched tone. She talked to him like he was a two year old, even though he’s actually two years older than her. In the middle of her conversation, he shot me a look that clearly said “Really?!” My daughter was visibly troubled by the exchange, as well. It can be somewhat exasperating for all of us because we know that people have the best intentions, but we do wonder when the realization will hit that Alex is just a kid who wants to be treated like everyone else.

It’s a tricky situation.

Alex enjoys those cheerful greetings and generous high fives, but just like any kid does, he longs for the day when there will be a knock at the front door from one of his friends, asking him to play. He looks forward to the time when he’ll bring home a birthday party invitation. He dreams of having a group of friends that include him because he’s a loyal, fun, genuine kid. As his mother, I spend a lot of time agonizing over how we can help him make these authentic connections, without embarrassing him (he is a teenager, after all!), and without seeming like a creepy, helicopter parent for trying to set up friendships for my teen.

While I continue to chew on that quandary, here’s what parents can do to help families like mine: encourage your kids to not only be kind to everyone, but to also truly include everyone. Help them reach out to kids like Alex, to build true friendships. Teach them to be just as loyal a friend that Alex would be, and urge them to do it because Alex is worthy of having friends, not because it would make a great viral story on social media.

When we can master awareness and kindness, and move beyond those essential elements, we can enjoy true inclusion. How magical that would be!

Alex and Addie – siblings and BFFs

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Why I Advocate

I’ve always been a quiet person (until you get to know me, I suppose), someone who would rather avoid confrontation than speak up and “cause trouble.”

This all changed when I became part of the disability community 13 years ago, as the mother of an awesome kid with Down syndrome. With the birth of my son also came the birth of an advocate: me.

It wasn’t an immediate change, as I still struggle of when and how to speak up, but in the last year I’ve definitely found myself more determined to have my voice heard. Not only have I advocated for my son, but I’ve gone beyond that to also share my concerns with elected officials in terms of federal and state issues that affect the Down syndrome community and the larger disability community. For the woman who hates phone calls, this was a huge leap outside of my comfort zone, but I did it anyway.

Calling my Senator to share my thoughts about the proposed repeal of the ACHA, June 2017

I fought through nerves and feeling like I was too inexperienced to make a difference to call, email, fax (thanks, ResistBot!), and tag my elected officials on social media in order to be heard. Why, though? Why would this introverted mess put herself through all of this? How did this stressed out mother of three become an advocate?

Because…

My head nearly explodes every time I hear someone drop the R-word.

Seriously, folks. It’s 2018! Let’s get it together. There are other words you can substitute instead of labeling something or someone as “retarded” when you truly mean “ridiculous.” Fix it, please, but until you do, I will be here to correct you and let you know why your word choices are inappropriate.

Others in my community don’t understand.

A few months ago, when I was picking up one of my kids from school, another parent came flying in, irritated, and loudly proclaimed “Sorry I’m late, but a handicap bus took six freakin’ minutes to unload and I was stuck there behind them!” Had I not been so busy biting my tongue to keep my initial reactions in check, I would have thanked that parent for their patience in allowing a student with a disability to safely get off their bus. But, I stood there, my left eyebrow grazing the ceiling, incredulous that someone would be that ignorant. In this instance, something that allows a child with a disability to safely travel to school was simply dismissed as a burden. So many times the disability community is overlooked because something that helps them could potentially be seen as an inconvenience to everyone else. I’ve seen this in education and workplace settings, and I’m sure it exists otherwise. It needs to stop, but until others realize that this type of behavior is not acceptable, it won’t. Next time I find myself in this situation, I hope I will have enough grace and courage to politely engage and raise awareness.

My son has the same rights as everyone else.

Until recently, most of my advocacy has centered around my own son and his inclusion at school. Inclusion is a tricky thing, as there is no “one size fits all” formula to enact it in our schools, churches, and workplaces. I am constantly striving to learn how to be a better advocate for my son so that he has the same opportunities as his non-disabled peers. Once his school years are complete, he has the right to to work and participate in his community as an adult, and lately, it seems that some of the supports that will aide him in this have been jeopardized. Although I had very little experience calling my congressmen, I picked up my phone and called to express my concern about this. I am very fortunate to have fantastic mentors so I can continue to learn how to be the best advocate I can be for my son. It is definitely a learning experience, all around, and I am thankful that I have the chance to learn as I go.

My kids need a strong example to follow.

More than anything, I want my kids to grow up to be confident participants in their communities. They have watched and listened to me make phone calls to Senators, they have asked about the countless emails I have sent, and they have participated in our video messages to our elected officials whom we tag on my social media profiles. I want them to know that their voices can make a difference, no matter what the issue is, and that it is their responsibility and privilege to speak up. They are already on their way to becoming awesome advocates, and I could not be more excited and proud.

Advocacy, no matter how big or small, can be stressful and tiring. Often times, I am tempted to put off an email to my son’s school or a call to my Senator because I am exhausted. But, knowing the impact that can be made, I trudge on, hoping that my quiet, non-confrontational self can make a difference. If nothing else, I have a story to tell, a story that continues to unfold, day after day. Perhaps by sharing a bit of this story, others will be inspired to speak up for those who can’t yet speak up for themselves.

This is how change is made. Change is the ultimate goal of advocacy, and it is also the reward.

Why I Advocate

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Alex and His Soccer Pals

Sports are an important part of our culture. They provide entertainment, build communities, encourage strength (mental and physical) and teamwork. There are many benefits to having sports programs, from little leagues clear up to the professional ranks. As with anything, the fascination with athletics varies from person to person, from sport to sport. I’ll admit, I’m not a big fan of any one sport. I like to watch certain teams (go Bucks!), and I love the Olympics, but mostly, I can take it or leave it. I do always enjoy the human interest type stories that evolve from the athletes’ experiences; often, I think those stories entertain me more than the games themselves.

Five years ago, our very own story began with a local sports team.

In the summer of 2012, I received information about a soccer camp that was being hosted by a nearby high school soccer team. At that point, Alex was the only one of my kids who was old enough to participate, so I asked the organizers how they felt about having a camper with Down syndrome (that was back when I asked; now I typically don’t give a heads up and just expect that he will be accepted into community programs). They enthusiastically welcomed him, and one hot summer evening, an almost eight year old Alex showed up to camp.

He promptly refused to play, and we left shortly after that.

The next night, though, we tried again; this time, a high school player took Alex aside and passed a ball back and forth with him. That passing drill somehow evolved into a game of Duck, Duck, Goose. I nervously watched, worried that Alex was distracting the high school player or the other campers, but the coach assured me that he was fine and that as long as he was having fun, that’s all that mattered.

He had an absolute blast.

Alex finished that week of camp with a big group of new high school friends. He had a great time, and while he didn’t develop many new soccer skills (by his own choice, not because of a lack of effort by the team!), he found something perhaps more important: inclusion and friendship.

Several weeks after the camp, I received an email from the coach, checking in on Alex and asking if there was a way that the team could remain involved with him. We were so touched that they were still thinking about Alex, and we invited the soccer team to join us at the Columbus Buddy Walk that year. We were blown away by their response: the coaches, players, and their family members supported our team, walked with us, posed for photos, and once again illustrated how great inclusion can be. Alex was thrilled to see his new friends again, and the following summer, he returned to camp.

Like the first year, he didn’t care for many of the soccer drills, but he had a ton of fun and continued to make new friends, and those new friends once again showed up to support Team Alex at the Buddy Walk. Soon after that, the team decided to host another camp, just for individuals with Down syndrome. This pattern has continued ever since that first year, and as Alex gets older, those friendships grow stronger. Alex’s original friends from the team are now college students, but they still make a point to visit with him and exchange hugs and high fives. He feels like he’s part of that team, and that’s how he’s regarded by the players and coaches. It’s a remarkable thing to see.

This past summer, as we drove to the first night of soccer camp, I suggested to Alex that maybe he should run the soccer drills rather than play Duck, Duck, Goose. “No, Mom!” he replied. “They like to play Duck, Duck, Goose! That’s how they include me.” After realizing that he was right, I stayed out of it. These kids get it. Alex is treated like any other kid, but they know when he needs a break or when something needs to be modified (or changed completely!) to suit him. They look after him, and he looks up to them.

Alex started attending the high school soccer games a few years ago, where he sometimes finagles his way to a seat on the bench, to fiercely support each and every player. Perched on that bench with his soccer pals is one of his most favorite places to be. He gives pep talks, he encourages players as they come on and off the field, and he cracks jokes to make his friends laugh.

Last night, we took Alex to see his friends play their last home game of the season, and it was Senior Night. Alex has been around the program as long as this group of seniors has, and he was really excited to celebrate them. He was invited out on the field with the team before the game started, to line up with them as the seniors were recognized, and he gave high fives to everyone as they passed by him. Admittedly, I’m a big cry baby any more, and it doesn’t take much to make me cry; I was teary eyed as the tributes the players wrote to their families, teammates, and coaches were read as they walked across the field with their parents. When one of the seniors stopped to give Alex a huge hug, I may have choked back an ugly cry right there in the bleachers. It was such an amazing demonstration of the friendships Alex has developed with the team over the years.

It’s our hope that these high school kids, their coaches, and their families know how truly grateful we are for them. Inclusion is not always an easy thing to accomplish, but they pull it off so effortlessly, making Alex feel like part of their soccer family. We look forward to continuing the tradition, and while Al may not attend that particular high school, he will always be one of the biggest fans of that soccer team.

After spending this many years observing at soccer camp, watching my younger son play on his teams, and attending these high school games, I still can’t claim to know much about the sport of soccer. What I do know, though, is that it brought my family a beautiful gift of inclusion, and for that, it might just be my very favorite sport.

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What I’ve Learned in My First 13 Years As…

My oldest son Alex recently celebrated his 13th birthday. Thirteen! Now officially a teenager, we’ve opened a new chapter in that non-existent parenting guide that we all think we should have. To commemorate our entrance into the teen years, here are 13 things I’ve learned in my first 13 years of parenting:

1. There are few guarantees in life.

After Alex was born and I was released from the hospital to visit him in the NICU at a different hospital, I was given time alone at his bedside to bond. I almost immediately became overwhelmed with sadness. I felt sorry for him and for us, envisioning what I thought his future would be: no prom, no driving, no college graduation…all because of his Down syndrome diagnosis and the misinformation I had received. Then, it sharply occurred to me that there are no guarantees in life. None. It is what we make of it. And with that, I became an advocate. We’ve learned the importance of flexibility and celebrating every little milestone. It’s my goal to help him achieve whatever it is that he wants to do. He’ll get there, eventually, with the proper support and encouragement. That is something I will guarantee.

2. I am an excellent hoop-jumper.

From the time that Alex was just months old, and for now and probably forever, I’ve been jumping through hoops to get what Alex needs. I’ve learned that an initial “no” does not always remain a “no”. To get it to a “yes”, though, sometimes requires jumping through endless hoops. Fortunately for Alex, his mother is pretty stubborn, and someday I do expect to earn a gold medal in Hoop Jumping from the Disability Parenting Hall of Fame. (If not that, then perhaps a bronze in Sarcastic Blogging?)

3. I will make mistakes, I will stumble, I will lose, but I will never give up.

I’m constantly learning how to be a better parent for all three of my kids. Parenting Alex, so far anyway, has proven to be the most challenging. Fortunately, we have a lot of support and resources to help us along the way. That said, I am far from perfect, and I will screw up along the way. It has happened, and will happen again. The most important lesson I can take from that is to not give up.

4. The opportunities to educate others are endless.

Not many people know a lot about Down syndrome, or the disability community in general. I didn’t, before Alex was born. I will ashamedly admit that I was an ignorant user of the “r-word”, and I wish that someone had called me out. I should have known better, but I didn’t, and I contributed to the problem. There are so many opportunities to teach our peers about Down syndrome and inclusion, and while finding the best technique to do so is tricky, it’s worth it in the end.

5. Finding your tribe is important.

Parenting takes up a lot of time, and often, we find ourselves distanced from our friends just because there aren’t enough hours in the day. This is especially difficult for parents in the disability community, as we endure extra challenges on a daily basis. Having someone, or even a group of people, who truly understand why it takes four days to return a text, are supportive when you have to cancel plans at the last minute, and who don’t judge you when you look like a zombie more often than not are so important to have in your corner. If you have a tribe, be thankful. If you can bring someone into your tribe, do it. We need each other.

6. Introverts make pretty good advocates.

I am an introvert: I do not like confrontations, speaking in front of people, or being the center of attention. I’ve learned, though, that when I do have to do any of these things, I can handle it. I never thought I would have to speak up the way I have, and I know I have a lot to learn, but I’m proud of the advocate I’m becoming.

7. Not everyone advocates the same way, and that’s ok.

Just like we all have different parenting styles, parents in the disability community have different advocacy styles. I often feel like I’m falling short as an advocate, and catch myself comparing my actions and philosophies against others’. We are the experts on our own kids, though, and we’re just trying to do the best we can. I am trying to remember that as I continue to learn the best ways to advocate for my son.

8. Siblings are awesome.

Alex is lucky to have two younger siblings, both of whom are becoming terrific advocates for their brother. I am always impressed to hear them stand up for their brother when he’s not being included, and they are confident enough to do this without prompting. While it’s not always easy being the sibling of someone with disabilities, they do know the importance of advocacy and inclusion. They are both amazing kids, and I am very proud of them.

9. Nothing is as picture-perfect as it seems.

With social media being such a driving force in our daily lives, it’s difficult to avoid feeling the pressure of presenting the “perfect family”. While I’ll be the first to tell you that my household is a hot mess, I feel bad that my photos and posts on social media give an illusion that everything is sunshine and unicorns. That is just not true. Each day brings many challenges, and I’m just trying to get through it all with a little humor and grace.

10. Kids are gross.

This has nothing to do with disability parenting; it’s just a fact. If I never find a booger smeared on a window again, I would be a happy lady.

11. Rest is important, and that is annoying.

Caregiver fatigue is a real thing. Parents of kids with disabilities are often running on high levels of stress and exhaustion. I can’t tell you how many times, in the last 13 years, that I’ve been encouraged to “relax” or “just breathe”. Sorry, but it doesn’t work like that. Even if I had the time, I don’t have the staff to cover all of the daily responsibilities, which would allow me the relaxation I deserve. Although he is 13 years old and is growing to be more independent each day, I still can’t leave Alex unattended as I would a typical 13 year old. It is what it is. That said, I can always tell when I’m ready to hit a wall. Aside from the obvious crankiness and exhaustion, I will earn myself a nice migraine when I’m not careful to take a break. This is also something I need to work on: more breaks, and not feeling guilty for taking them.

12. The laundry will never be done, so don’t even try.

I’m constantly trying to conquer Mount Washmore, and it just never gets any smaller. At this point, as long as everyone has clean underwear for the next day, I consider it a success.

13. Being a mom is by far the best thing I have done in my life.

As frustrating and exhausting as it may be, there is always a joyous moment in my day. I wouldn’t trade being my kids’ mom for anything, not even for someone who could contain Mount Washmore. And that says a lot.

As my kids continue to learn and grow, I will do the same as a parent. They are teaching me far more than I could ever teach them. Here’s to the next 13 years!

Happy birthday, dear Alex!

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My Son with Down Syndrome Ran for Student Council…

To say that I am a passionate advocate for inclusion may be an understatement. Having a son with Down syndrome has taught me many things, but perhaps the most important lesson is that we must see beyond labels and afford everyone the opportunities they need to truly be included in their communities.

A couple of weeks ago, I noticed in the school’s daily email blast that it was time for Student Council elections. I will admit it: I geeked out. I was a Student Council representative in middle school, and held office in high school, and I loved it. You really don’t need any special talents or abilities to serve your school as a member of Student Council, so it allows everyone – from the most shy, to the most popular; from the introverted book worm to the star athlete – to feel like they can contribute. Typically, Student Council reps and officers are voted in by their peers, and because everyone gets a vote, everyone gets to participate in the process.

The ever-determined advocate in me decided to pitch the idea to Alex; what a great way for him to get involved at school! After I explained to Al what it was, and what he would do if elected, he decided that he would like to throw his hat in the race. We requested an application packet, and when he brought it home, we got to work. He dictated his answers to the student questionnaire, I wrote them down for him. He selected three teachers to whom he would give the teacher recommendation form; I sent an email alerting them that he would be bringing the form.

Preparing his “campaign speech” was a bit more challenging. He has performed in many school plays and church programs, and has no problem speaking in front of groups of people. However, reading scripts has occasionally proven difficult in the past, so someone has stood by to prompt him through his lines. I requested that either a peer buddy or an aide prompt him during his speech, and we practiced and practiced at home. The morning of the election, I received this photo, showing that he did indeed deliver his speech to persuade his homeroom classmates to vote for him.

Elections results were supposed to be announced today, but I didn’t hear an official announcement of the outcome. I can gather, though, that Alex was not elected as his homeroom’s Student Council representative. While it would have been incredibly cool to have a student with Down syndrome elected to represent his peers, I’m still very proud of Alex. He accomplished so much just by trying! He showed his peers that he is, indeed, an equal and able member of their class. He demonstrated that all students can easily be included, when modifications are made. He proved, again, that we should constantly be seeking out the abilities of those around us, and not shortchanging them because we don’t think they are capable.

Well done, Alex. And don’t worry…you can try again next year. #InclusionMatters

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To My Alex, as Elementary School Ends

Dear Alex,

Here it is, the week I’ve been anticipating since the first day of school. Tomorrow, you begin your very last week of elementary school. Wow. How quickly it arrived, and what a journey it’s been.

When you started Kindergarten, six years ago, it was a new experience for both of us. You were excited, probably because it meant a bus ride to and from school and daily access to the school playground. I was optimistic that you would be a rock star, that you would have an awesome time in elementary school. What I didn’t realize was how much noise I would have to make in order for you to have the experience that your dad and I envisioned. (You were, and always will be, a total rock star. No worries there.)

Al, your mom doesn’t like confrontations. While I may have been blessed with a passion for writing, speaking up is just not my thing. Before you even started Kindergarten, I began to realize that I would just have to get over my reluctance to do that, and fast. Our society tends to operate with the “but we’ve always done it this way” philosophy, and when someone shows up to change that, it’s not always well received. That explains my last six years, in a nutshell. You were not invited to Kindergarten orientation, you were not assigned a “job” in your Kindergarten class, and you did not even have lunch with your Kindergarten classmates. It seems those two words that are repeated throughout all the paperwork that preceded you to school, “Down syndrome”, defined your path before you even stepped foot in your school. It wasn’t done intentionally to leave you out; this is just how it worked back then.

I was flabbergasted. I had heard stories of children with disabilities not being included, of parents who spent a fortune on special needs attorneys so that their children would have the same opportunities. I blew it all off; we are in an excellent school district, and I refused to believe that we would have to make a fuss just so you could have a turn being “Line Leader” in your Kindergarten class. Yet, there we were. I have always been your advocate, Alex, but it was then that I knew I was going to have to turn up my efforts to make sure we were heard.

We started asking for meetings. I began challenging the standards; with just a few days left, I haven’t let up! It is not always received well, and quite often we get the impression that our inquiries are not appreciated and are taken personally. We forged on; if Hoop Jumping was an Olympic sport, I’d be a gold medal contender. We made a lot of progress! You went from a Kindergartner who only joined your peers for a short time each day to a fifth grader who spends most of your day with your peers (as it should be).

It hasn’t always been perfect, Alex. There have been many, many bumps along the way. But the beauty of this whole situation is that you love school. You have wonderful friends, and you like your teachers. You have no idea how much of a pain in the butt I’ve been to the school district. You don’t know how often I’ve (sometimes literally) banged my head on my desk, cried in frustration after reading your assignments that weren’t properly modified, or exchanged tense emails with people in the school district. You have no idea how often I’ve felt discouraged, how I’ve doubted my advocacy efforts, or how some days I just feel like giving up. But I won’t give up, not ever, because of the other things you haven’t yet realized. You haven’t noticed that although you are learning a ton from your peers, just by being in class with them, they are also learning from you. You have yet to discover that you are teaching people that it’s ok to be different. You are unknowingly showing everyone that if we stop to see the ability in all people, great things can happen across the board. Together, we are proving that #InclusionMatters.

There is still a lot of work ahead of us, Buddy. It will continue to be a challenge for me to speak up to ensure you get the education to which you are entitled. Your dad and I will do it, though; we will continue to work hard, behind the scenes, to make sure that you are seen as Alex and not an “SLC kid” or “Downs boy” (we have heard both of those labels, many times, and both make me cringe). You deserve better than that, and I will continue to demand it.

So as you walk the halls on Friday for the Fifth Grade “Clap Out”, I will beam with joy and probably fight back some tears, but I won’t be sad that you’re leaving that building. I am proud of the work we’ve done there, but it’s time to look ahead to the next milestone. We will certainly celebrate your accomplishments of the last six years, but I’ve already turned my attention to the adventure that is middle school.

Congratulations, Alex. We survived elementary school, you are absolutely a rock star, and I couldn’t be prouder. Cheers to you!!

Love, Mom

Oh, how you’ve grown!!

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Battles

I got a lot of advice after my son was born and we learned of his Down syndrome. Suddenly, there were experts (“experts”?) at every turn, offering words of advice on everything from what to feed him, which therapies to start, and even tips for hiring a special needs attorney.

I remember bristling at that suggestion, thinking that if it ever came to the point where we thought we needed an attorney, then the situation would be so off base that we would just remove him from whatever was causing the problem.

Alas, first time mothers often make mistakes on which they later reflect in amazement.

I never imagined that I would have to spend hours revising IEPs, or that I would worry incessantly about the words I chose, so as to not affect the reputation of my family and negatively impact a situation for my other children. I never thought I would have to nitpick every last detail about my son’s schedule, both at school and for extracurricular activities, to ensure the highest level of inclusion. Some days (years!) I worry more than others; some activities cause more stress than others, while still other situations leave me banging my head against the wall. And, on the flip side, sometimes I find myself in a complete state of astonishment because I don’t have to work at all to find the right balance for Alex because the party on the other side of the scenario just gets it (church programs and dance studio, I’m referring to you here…). That situation doesn’t occur often, but when it does, I find myself happy but also frustrated, because shouldn’t it be that “easy” all the time?!?

Beggars can’t be choosers, though. I’ll enjoy these rare occurrences whenever they arise.

I’ve seen the term “Warrior Mom” applied to mothers of children on the autism spectrum, but I think it is fitting for all mothers who are fighting for their children. While mothers of children with special needs might find themselves with more cause to battle schools, government institutions, healthcare companies (the list could go on and on, I’m sure), all moms who advocate for their children are Warrior Moms. Our armor? The tough skin that you have to develop to take all the nonsense, set backs, and other struggles that come with this territory.

And let’s not forget the dads! I so rarely hear about the fathers of children with special needs and their advocacy efforts. They may not be the vocal parent at the conference table, but they are just as involved in the process. Advocacy is definitely not a one-person show.

While Alex has been blessed with many great teachers, therapists, and cheerleaders, we still spend a lot of time making certain that he has every opportunity available. I tend to be a “pick your battles” kind of mom, except when it comes to matters of inclusion. I don’t mess around there. I’m trying to relax this summer, and take a break from the constant looking-over-shoulders that I find myself doing during the school year. So far, it’s been difficult to step away; it’s now to the point that I feel that I’ll miss something if I let my guard down for even a few weeks in the summer. It’s pathetic to think that, right?

I’ll always feel that way, though. I suppose it’s just one of the many pieces of this big advocacy puzzle that we’re still trying to put together.

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#InclusionMatters

You may have seen me use this hashtag before, on Twitter, when I share a link or express my thanks to a public figure for drawing positive attention to a situation which involves an individual with Down syndrome.

@jamesmaslow Thank you for being a great advocate for #DownSyndrome. I’m so excited for Hannah! #inclusionmatters
— Jen Franklin Kearns (@jnfranklin) April 15, 2014

This is something that I do to try and share the importance of inclusion with everyone, as many people just don’t have cause to think about it. It is my hope that someone sees the hashtag and puts a little thought into why inclusion is such a beneficial element.

Today, I was fortunate to see inclusion in action. Alex went to a birthday party for one of his third grade classmates. For the last couple of years, this has not been a standard occurrence. For some reason, the party invites stopped arriving; we feel as though this has coincided with the decline in classroom inclusion in previous years. The kids just haven’t been given an opportunity to see Alex as their peer. However, we (Mark, Al’s third grade teacher, and myself) have worked hard this year to increase Alex’s inclusion time. When Mark spoke to Al’s class on World Down Syndrome Day, he made sure to point out all the similarities between Alex and typical third graders. We sent home an information sheet about Down syndrome to the class, and Mark felt like he really got through to the kids. I would have to agree.

When we arrived at the party this afternoon, he was greeted with the usual enthusiasm, and after that, he chose to shoot baskets on his own for a bit (the party was held at an indoor play area). This is what we typically do. The kids are always happy to see Al, but then they get caught up in their own activities. This doesn’t usually bother Alex, as he still gets to see his friends, so I just followed Al around as he explored all the different play areas.

Then, something remarkable happened after Al happened to catch up to some classmates. They decided they were going to play on something else shortly after Al joined them, but instead of taking off, they stopped and waited.

“C’mon, Alex!” one boy said, and then another repeated “Yeah! Alex, c’mon, with us!”

Alex beamed. I beamed. It was wonderful.

They all stampeded toward a trampoline, where they bounced and shot baskets into an attached hoop. Al has a pretty good shot, and could keep up fairly easily with his peers as they all jumped around, playing basketball.

My amazement didn’t stop there. “Mrs Kearns! Did you hear that Alex read to our class today? It was awesome!!”, one of the boys yelled.

There were no other adults involved in this conversation; nobody was prompting them to make conversation about my kid. They seemed genuinely proud of their friend and his accomplishment, and they wanted to make sure I knew about it (I did know, as his teacher had sent me a note to tell me). Again, Alex beamed.

Then, the pizza arrived and it was time for the kids to eat, but Al decided he was too hot and he asked to leave. He said goodbye to his friends (and even got a couple more hugs), and we thanked the birthday boy’s family for the invitation.

I hope this is the beginning of a new trend. The more his peers see that Alex can do what they can do, I feel like they will include him more in their activities outside of school. This is just one way that inclusion benefits everyone, and hopefully, with time, we will be able to spread the word even further.

Inclusion matters. It really, really does.

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Vote!

No time to write tonight, friends! I’m too excited to see the lovely Hannah tonight, getting her wish granted on Dancing with the Stars.

It’s great fun to see a member of our very own Down syndrome community getting an opportunity like this. I’ve never met Hannah, but I couldn’t be more excited for her.

If you watch the show, please vote for James tonight!

And now, back to the show!