#InclusionMatters – Coffee and Inclusion

Tag: #InclusionMatters

I Am Aware: Thoughts on Down Syndrome Awareness Month

October is an important month in the Down syndrome community,
a time to promote awareness and acceptance by educating our peers and sharing
our stories about our loved ones with Down syndrome. I’ve seen many essays and
social media posts dedicated to Down Syndrome Awareness Month; so many friends
and fellow advocates are doing a wonderful job informing their greater
communities about what Down syndrome is. Having celebrated DSAM for many years
now, I was struggling with how to promote awareness this month. After much
consideration, I discovered that I am very aware of Down syndrome. I mean
really, really aware. Because so many facts and advocacy tips are already
circulating, I’ve decided that my contribution to Down Syndrome Awareness Month
lies somewhere in my own personal experiences.

I am aware that
building awareness and acceptance of Down syndrome is a responsibility 365 days
a year, not just 31 days in the month of October. Many people have shared
that they celebrate their loved ones with Down syndrome every day of the year, so
they don’t see the importance of doing it just one month, and I agree with that…to
a point. It takes a conscious effort to carefully and consistently educate our
families, friends, educators, and community members year round so that this
information becomes second nature, and not just something that is pointed out
one month a year. However, upping our game during October is a great way to
increase our advocacy skills and highlight some major elements and key concepts
that we want to share.

I am aware that
inclusion is not a “one size fits all” concept. When I advocate for inclusive
opportunities for my son, Alex, or share my thoughts about inclusion, I
inevitably hear something along the lines of “that would never work for my
child.” And I have experienced that, too; after reading about different
circumstances, I’ve often thought “that’s amazing…but it would never work for
Alex.” And that’s ok! I wouldn’t want an opportunity to not be available for
someone else because it wouldn’t work for my family, nor would I want to see
something forced on someone else if it wouldn’t be appropriate. Inclusion
should be a fluid, customizable concept that benefits an individual, and I
think that special education would best function in this manner as well. Supports
should look different, because they are serving different individuals, but the
big picture should be the same. It is challenging at times, but most certainly
worth it.

I am aware that many
people have good intentions, yet low expectations. My son has met many
wonderful people in his life, most of whom only wish the best for him. I’ve
noticed, though, that many of us need to raise our expectations in regards to
individuals with disabilities. These individuals can and will accomplish
extraordinary feats, but we may never know exactly what they can do until they
are encouraged to try and then fully supported.

I am aware that all
of my kids are awesome. Our family dynamic is different, and because of
that, I’m watching my kids become amazing people. They began learning, at very
young ages, that they can advocate for their brother, and other individuals,
with Down syndrome…and that their voices matter. I believe that they will only
continue to grow as advocates, and that this will benefit them (and all those
around them) for the rest of their lives.

I am aware that I am
stronger than I ever thought possible, and I have Alex to thank for that. Like
my younger kids, I am finding my voice as an advocate, and realizing that my
part in this story is a powerful one that can help others. Learning how to
advocate is empowering, and knowing that I am making a difference is rewarding.

I am aware that there
is a lot of work to do. Advocacy doesn’t end. I don’t think there will ever be a time when
I will sit back and say “Yep. I’ve done all I can for my son, and there’s
nothing left to learn.” It just won’t happen. We can all do so much to help our
loved ones with Down syndrome flourish, and we can always find ways to help
build awareness and acceptance in our communities.

I hope you’ll join me in taking the time to build awareness and
acceptance of Down syndrome this month, and also learn how to best educate,
support, and include individuals with Down syndrome well after the calendar
flips to November.

My reason to celebrate #DSAM

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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 the Ordinary is Extraordinary

Last week, Alex overslept (the time change is hard!) and missed his bus, so I drove him to school. We pulled into the designated car drop off line, and when it was our turn, he gave me a quick “Bye, Mom!” and then jumped out of the car and hurried into the school. I watched him walk into the building before I drove away, but knew that he would go straight to his locker, put away his coat and gather his supplies, and then report to his homeroom.

All on his own.

Without me hovering.

He did what most every other middle schooler did that morning.

It was so simple, yet so remarkable, all at the same time. I’d be lying if I said I didn’t tear up when I drove away. Not because he doesn’t need me anymore, but because so many people have doubted him, from the second he was born, but there he was…being a typical teenage kid, going to school, just like his peers. Down syndrome isn’t holding him back like we once worried it would. Sure, he needs extra time and support, but he has proved time and time again that he is capable. He can do hard things, just like the rest of us.

This World Down Syndrome Day (3.21.18), I hope for even more ordinary moments. I want to see him accomplishing all of the plain, boring things that teenagers and young adults do. School work, sports, clubs, friends; I want to see him be included in all of the mundane activities that most of us take for granted.

I want to see him continue to exceed expectations.

All on his own.

Without me hovering.

I’ll just have to remember to keep extra tissues in my bag.

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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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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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First Sleepover

Alex has been dying to have his friend sleep over since they became good friends last year in third grade. He had never had a sleep over with friends, and because bedtime battles are so awful, we’ve put it off.

Until now.

Alex was talking about a sleep over again, at the beginning of this week, so I decided to give it a shot. His friend accepted the invitation, and they have spent the evening playing basketball, eating pizza, watching tv, and playing games. Al’s friend is a sweet and patient kid that really makes an effort to understand and help Alex, without making it seem obvious that he’s helping. Does that even make sense? They definitely have a special bond, and they both seem to be having a great time.

#InclusionMatters

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Best Shirt Ever

If you’re a regular follower of this blog, you’ve read about our #InclusionMatters campaign, which included two rounds of fabulous t-shirts from I Heart Garments. Our shirts started arriving this week, and I am completely in love with my hoody. Seriously, I may never take it off.

I will proudly wear this hoody (and the t-shirt, because I couldn’t resist and needed to have both!) because of the beautiful message it promotes. #InclusionMatters. Everywhere, for everyone.

I will also continue to watch for upcoming campaigns from I Heart Garments. When you can score comfortable shirts that support important causes, it is most definitely a win win.

Check out their site. Think about how #InclusionMatters to you.

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Very Important!

This.

It’s very important, so I’m posting it again. We only have one more day, you guys. ONE. More. Day.

Please show Addie that you support her vision of #InclusionMatters. She’s eight years old and trying to make a difference in this crazy world.

Thanks!

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Top Ten Reasons to Support #InclusionMatters

With less than a week left in our I Heart Garments fundraising campaign, it’s time to kick our efforts into high gear! If you don’t order your tshirt/hoodie by 7/21, you will not be the proud owner of this limited edition item. That would be sad, but even worse, you won’t get to show your support for the awesome idea my (almost) eight year old daughter wants to share with the world.

So, to help motivate everyone to order in time, I present to you:

The Top 10 Reasons to Support #InclusionMatters:

10. This is an awesome shirt. It’s super soft, way comfy, and ultra cool.

9. This video.

8. Inclusion goes well beyond the special needs community. It’s important to teach our children, as well as our peers, that everyone should be loved and accepted for who they are.

7. The design! The real hand prints illustrate real people joining hands to represent inclusion, while the thumbs come together to form a heart to represent Addie’s vision of sharing a message of inclusion via her foundation, Giving Hearts.

6. In a world which values potato salad fundraisers, this is a genuine fundraising campaign which is also trying to spread kindness. #InclusionMatters really should get more support than a picnic side dish, wouldn’t you agree?

5. How often do your clothes make an awesome statement but also support a fantastic organization?

4. This video.

3. These super cute kids are way excited to share this campaign with you. Don’t disappoint them. Share, share, share! Share this blog post, post my Facebook updates on your own page, retweet my reminders.

Alex and Addie crack each other up!

2. WE ONLY HAVE UNTIL MONDAY, 7/21, TO SELL THESE AMAZING SHIRTS AND SHARE THIS VERY IMPORTANT MESSAGE!!

1. A little girl with a heart of gold wants all of us to be included, all the time, no matter who we are. This is the essence of the campaign. In her own words, “please show the world that inclusion matters to you, too.”

Buy the shirt. Share our message. #InclusionMatters. It really, truly does.