Growing Up

Growing up, we were very different.  She was outgoing and extraverted, I was shy and introverted.  She was more expressive, while I was more intense and analytical.  She loved to move and was the first to jump up and interact with her surroundings, while I was cautious, detail-oriented and reserved.  That is what seems so ironic about siblings, the person that you are genetically most similar to, you also have many undeniable differences.

As a child, I sensed many of our contrasting traits.  But these characteristics did not affect our connection to each other. Instead, I idolized my sister’s exuberant, social nature.  She was five years older; she was confident and likable.  She would initiate conversation where I froze up, and when we were in new situations without the guidance of our parents, I clung to her desperately because I knew I would be okay when I had her. We made a great team because her strengths made up for my weaknesses and vice versa. Whether it was setting up a tea party in our tree house, creating “bubble land” in our front yard, managing doll daycare, or putting on dance shows for my parents, we were able to use both of our strengths to our advantage. As a young child, I subconsciously recognized the differences in our personalities, but I didn’t notice that my sister had a developmental disability.

Some may say this is the lack of knowledge and the naivety of youth. I tend to disagree. I think it is a mind that has not been impacted by barriers created by society, by the stereotyping of a homogenous culture, by the isolation of people who differ from the social “norms”, by the stigmas of the often ill-educated and hateful language that we communicate with, by a world that says they can’t. I believe that the exposure to this is what caused me to notice the curious stares, the commentary about the little school bus and the “special” activities my sister was a part of. I didn’t think my sister was challenged or difficult, and I felt uncomfortable and confused when I was consistently being described as patient, an angel, and such a sweetheart for simply being a part of my family.

I can remember sitting in our basement with hundreds of pieces of candy, our child sized chalkboard and my 2nd grade double column addition homework.  Feeling uncertain as to why my sister didn’t know how to do double column addition as a middle schooler, I made it my mission to teach her.  In my mind this was a simple task that I was determined to complete. She was my big sister, and she was wiser, she was smarter, she could do it, I just had to show her how.

We drew pictures, we counted candies, started from simple to complex and over and over. Why couldn’t she understand? What was I doing wrong? What could I do to make her learn? I was insistent on my goal so we kept repeating each strategy again and again until we were both yelling and frustrated.  My sister sat with her head down staring at our array of supplies. She looked at me with discouraged eyes; she had failed. She stood up abruptly from our table, and walked away. At that moment, I was heartbroken. I wanted to be there for her, to help her, to teach her as she had often taught me, but I had failed.

This was the moment that I remember realizing that my sister was different, and there was nothing that I could do to change that. After a conversation with my mother, my realization was validated. I was confused about many things, and frankly I don’t think I could have or needed to understand all of the facets that our sibling relationship entailed at eight years old.  The one thing that I did know for sure was that I didn’t love her any less.

As I advanced into the jungle of the preteen years, I found that my sister looked to me more for leadership, that she needed more help from my mom than I did, and our milestones were frequently different.  I often felt embarrassed talking about her to my friends whose sixteen-year-old sisters were learning to drive and dancing on the varsity dance team.  I feared what other people thought of her, that they wouldn’t understand her, that they would make fun of her, view her as incapable, and put her down- I feared this the most.

Growing up with my sister, I have always felt things deeply.  Whether it be guilt, shame, sadness, joy, compassion, humility, anger, the list could continue for pages, but it always culminates with passion. I listen to my sister explain her job to our family friends, watch as she accepts the “Rising Star” award within her Special Recreation Association, or go to brunch together just us two, and I notice her expression of pride and independence. In these moments I feel she is forging through society’s barriers and proving that she can.

Fast forwarding to the present, growing up (and some college classes) has taught me to apply this passion that developed from my relationship with my sister to the Disability Community as a whole. I continue onward working toward a society that values every person as important.  I work daily to create small changes in my community, and I have to constantly remind myself that these changes will someday lead to a world that is free of barriers and includes individuals with differences of all kinds. Sometimes I think to myself, “If only every person could grow up the way I did.” I wish everyone could have a role model, a teacher, a friend, a student, a person, a sister like mine to show them all that life has to offer when you color outside the lines, take the time to learn in an innovative way, communicate through a medium other than words, move with an interesting gait, or express yourself in a manner that is completely distinct to you. Instead of the world perceiving any of these things as a deficiency, an issue, a problem or something to be “helped” or “fixed”, we will only see it as a variation that makes each person uniquely human.

–Written by Sierra Shum, edited by KIT staff.

SierraandChelseaSierra Shum is a recent graduate of Miami University in Ohio.  She received a B.F.A in Painting with a minor in Disability Studies.  Sierra has been involved in many organizations throughout her life with the continual focus to use creativity to foster inclusive environments for individuals with disabilities.  Currently, Sierra serves as Outreach Coordinator at The Center for Enriched Living in the North Suburbs of Chicago.  The Center provides social and recreational opportunities for teens, adults and seniors with developmental disabilities.  Sierra plans to continue her activism through education, creativity and sharing her experiences with the community.

In this post, Sierra writes about her sister Chelsea.  Chelsea is 28 years old and has two jobs in the Northwest Suburbs of Chicago.  Chelsea is very active in her community and participates in a variety of different programs through Northern Illinois Special Recreation Association.  Chelsea enjoys singing in choir, acting on stage in her theater productions and meeting with her church group each Tuesday.  She continues to show others how truly wonderful it is to accept and respect people for their differences.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

It’s Testing Season…

… And there’s a lot of tension in the air. At least at my school, teachers are constantly talking about standards and data and rigor. Everyone is stressed out! I needed to take a break from the testing madness and get some thoughts out about why I do what I do and who exactly I do it for.

I teach in an urban school district that is consistently under-performing. (Chicago Public Schools famously reported that in 2006, only 6% of its incoming freshmen would graduate from college. To learn more, you can read this original article from the Chicago Tribune.) I am a strong believer in using quantitative data to inform my teaching, and I believe that we should absolutely measure our success in closing the achievement gap for our students. However, from what I’ve been hearing (and experiencing myself), teachers are so overwhelmed by the emphasis on testing and de-emphasis on the real live kids we teach every day.

Though I am absolutely proud when I see a student ace a classroom test, and I love seeing the numbers that demonstrate that my students are mastering curriculum standards, there is so much more to my students than their test scores. I want everyone to know about how kind Joseph is when he reminds me to pass out homework at the end of class (because I am notorious for forgetting that…), or how thoughtful Sean is when he helps me clean up the materials from class, even though the students have already been dismissed for lunch.

Test scores don’t show the astonishing growth in independence that I’ve seen in Lena when she comes early to school twice each week for extra study time in math, or the pride on her face when she recently got an A on a math test. (I passed the tests out at the beginning of the class period, and she kept it out on the side of her desk for the entire class, occasionally glancing at it and grinning.) The scores may not show that Matthew has finally started to understand the process of long division (after months of hard work), and when he gets it right, his smile extends across his entire face.

The pride my students see in their hard work paying off is not always noticeable on standardized tests, and I want everyone to know how much they have grown as independent thinkers and as citizens who contribute to our school community. To all of my fellow educators out there who are feeling weighed down by standardized testing, I feel your pain. I can only encourage you to see the good happening in your classroom every day, and to point it out to your students when they get frustrated by all of the tests coming their way. Continue to show them how much you care about them and believe in them. At the end of the day, when your students think of you years from now, they may not remember the test scores that you helped them achieve. They will, however, remember exactly how you made them feel, so make your moments with them count.

–Written by Elise Hopkins, KIT Blog Editor

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

In Honor of World Down Syndrome Day

“I’m a snowman, Torrie, and I. Am. Melting.” As I watched Devon, a 6th grader with a deep love of Broadway musical soundtracks, lying on a stage in a fully padded snowman costume during the middle of a performance on a warm San Diego evening, I could only laugh. He was surrounded by a cadre of children who were singing and dancing to “Frosty the Snowman” and they all happily stepped over him as he lie flat on the stage. Mind you, this was not a choreographed part of the routine. Devon, who happened to have Down syndrome, had begged to be “Frosty” in the performance, and the costume shop at the youth theater where I taught Devon and hundreds of other kids had hooked him up with a pretty incredible costume. He loved it… for about 15 minutes. However, as the reality of jumping around wearing, basically, a sleeping bag on a warm day under hot theater lights set in, he was over it. His way of showing me was to actually melt to the ground during the performance while I whispered to him from the wings, “Devon, get up! Get up!” His “melting” performance was just another reminder to me of how smart, funny and quick-witted this boy was.

Devon was my introduction to the world of inclusion, and I will never stop being grateful to him and his mom for giving me the opportunity to be his theater teacher.

Torrie DSAD PictureBefore Devon’s mom, Linda, called me to sign her son up for an acting class, I had no experience with individuals with disabilities. When she told me that her son had Down syndrome, I had almost no idea what that meant. I remember being afraid. I was afraid of failing him as a teacher and afraid of not knowing what do. I told Linda, “I want your son to have a great experience in my class, but I have to admit that I don’t know anything about Down syndrome. I am going to need your help.” She said, “I will definitely help, and there is a small non-profit in town called Kids Included Together, and if you call them, I know they will help, too.”

I did not know it at the time, but that phone call would change my life. Working with Devon and his mom forever changed the way I see the world. They taught me to see people for their strengths and abilities, and not their perceived deficits. I learned to check my own assumptions and to try, in every way possible, to overcome my biases. I learned that by making creative accommodations, my teaching became more responsive for every student, not just those with diagnosed disabilities. If it weren’t for Devon, I would not get to fulfill my purpose every single day working for Kids Included Together.

Torrie with DevonAs we celebrate the 10th Anniversary of World Down Syndrome Day, I want to formally thank Devon, Linda, and the many children and families that I have had the pleasure of learning from since my journey to inclusion began almost twenty years ago. To me, inclusion is the promise of a better world, where children like Devon are respected, welcomed and supported in their communities – even on stages melting away in sweat-inducing snowman costumes, if that’s what they want to do.

— Written by Torrie Dunlap, CEO of Kids Included Together

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

Introducing… March’s Advo-KIT of the Month, Brooke Boswell!

brooke_boswellThis month, we are celebrating the accomplishments of Brooke Boswell, March’s Advo-KIT of the Month! Brooke works as a Child, Youth, and School Services Administrator at US Army-Child, Youth and School Services in Germany! Brooke, thank you for spreading the word about inclusion across the world, and congratulations on being recognized as Advo-KIT of the Month!

When were you first introduced to inclusion? Why did you choose to become a champion for inclusion?

I was first introduced to the concept of inclusion during college when I was taking education courses focused on working with children with special needs. I made the commitment to become a champion for inclusion when I began working with children with autism while I was a camp counselor at a camp that facilitated ropes course experiences for children with special needs. It was and still remains one of the most important commitments of my life.

What do you love about inclusion?

There are many things I love about inclusion. I love the sense of community that is inherent in inclusive environments and how children grow to care and respect each other. I love that children learn from each other’s differences. I love that children learn that it is okay to be different and that being different is a great thing that makes each of us so groovy!

What is your vision for an inclusive world?

My vision for an inclusive world is very simple: no more discrimination of any kind.

Did you overcome a barrier or roadblock regarding exclusion/inclusion?

I have been extremely fortunate that I have not had to overcome barriers or roadblocks regarding inclusion.

What is one of your most memorable inclusion experiences?

One of my most memorable inclusion experiences involves a group of fourth grade girls that I was working with to help improve their skills in mathematics. It was a group of 9 girls from 3 different classrooms and we met twice a week for 30 minutes during the course of 8 weeks. One of the girls was new to the school, and she wore leg braces and used forearm crutches due to Blount disease. On the first day of our group meeting, it was obvious that the girls were curious about our new classmate but did not know how to approach or interact with her, so they tended to exclude her from their conversations. During our second meeting, I informed the girls that we would start our sessions with a quick show-and-tell type of activity. At the end of this meeting, I encouraged our new friend to talk about her braces and crutches—if she was comfortable. She was immediately excited to share these pieces of herself with the group, and she volunteered to go first during the next session. It was amazing! The other girls listened with rapt attention and asked lots of questions at the end. Needless to say, that day’s session had very little to do with math skills but had everything to do with human compassion. After that day, it was as if a switch had been flipped and all of the girls worked together during the remainder of our sessions. I even noticed most of them playing together during recess! I learned a great lesson through this experience about the power of educating children about our differences and that the impact is even greater if the education comes from another child.

What is your top tip that you would give to someone working with children?

My top tip for people working with children: it is all about compassion and connection. The more compassionate we are about the children we work with, the greater our understanding will be of the situations they face. This compassion and understanding will lead us to better and stronger connections. It is this connection that will enable us to truly make the difference we seek in the lives of the children with which we work.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

 

Confessions of a Special Needs Parent: Please Don’t Praise Your Kid for Playing with Mine

The following post speaks to why inclusion matters. Thank you so much to Ellen Stumbo for allowing us to share her beautifully-written post. She teaches us to be intentional about how we discuss choosing diverse playmates with our kids. Playing or interacting with people with disabilities is not community service. It’s not something we do to be nice to people who are less fortunate. It is a celebration of diversity and an opportunity to learn about people who are different in some ways, but also similar in others. What we say, and how we say it, matters. It sends a message to children. Please make sure you are sending the right message.

It happens, a kid plays with a child with a disability and the parents are proud. They want to praise that friendship, and you might hear statements like, “Oh honey, you are so wonderful!” “You are the kindest person I know!” “You are the sweetest thing!” “You have a heart of gold!” “I’m so proud of you!” 

friendship and disability

Yes, it’s true, not every child takes the time to slow down and play with kids like mine (I have a child with Down syndrome and one with cerebral palsy), I’m aware of that, so when your kid plays with mine it makes me smile. I’m so thankful for your son or daughter. And I want to encourage that friendship. I think you do, too.

But can I be honest with you? I don’t want you to feel bad here, but I hope you can see what some of those statements say to me, as the parent of a child with a disability. When you say your kid is great because he/she chose to play with mine, at that very moment, your child went from seeing just another friend, to seeing kids like mine as different. They become someone defined by their disability, as someone who is somehow flawed, and only an exceptional person plays with them or becomes their friend. I know that is not what you are trying to communicate, I know that, but unfortunately, it does.

You encourage your children to be friends with everyone and to embrace differences, thank you! Unfortunately, with statements of praise of how exceptional they are for playing with my kid, you might be communicating two things:

1. The friendship is all about your child and how wonderful they are. The friend with the disability becomes the outward display of that greatness.

2. It teaches a mentality that separates and makes those with a disability appear as less than those without disabilities. “They are the disabled, they are different, poor them, we should help them.”

Suddenly, I feel as if your child playing with mine is more about pity rather than a real friendship.

Would you praise your child like that for playing with a typically developing kid? Probably not.

Our words are so powerful. They shape our kids, their attitudes, their perceptions.

We all want to show our kids we’re proud, we want to encourage them when we see positive traits in them. But playing with a child who has a disability should not be seen as heroic or exceptional. Be proud because they see a friend first and not the disability; please help them to keep it that way. You can do that by avoiding the praise and instead asking questions about their friendship, questions that sound more like, “I saw you playing with Nichole, what were the two of you playing?” “Hey, you were making Carlos laugh, were you telling him your new knock-knock jokes?” “What was your favorite thing about playing with Micah?”

Is it okay to ever bring up the differences? If appropriate, yes! For example, your child might even ask you why my daughter, who has Down syndrome, is hard to understand when she talks. Believe me, if your kids have questions, they’ll ask! But it’s very different for a parent to say, “You are so wonderful for playing with Nina because she has cerebral palsy,” as opposed to saying, “Hey buddy, did you ask Nina if she wanted to play tag again? I noticed she was really tired and having a hard time keeping up.”

Let’s teach our kids that playing with other kids, even those with a disability, is about friendship. Genuine friendship. If you want to praise your kid for being a good friend, then praise them for the same reasons you would praise them for positive interactions with a friend of any ability.

“You are the kindest person I know, you gave Charlie your last piece of candy!”

“Oh honey, you’re so wonderful, I loved that song you were singing for Tina. You made her smile and you made me smile even bigger! Will you sing that for me again?”

“You are the sweetest thing, you know? I love how you treat all your friends with kindness.”

“You have a heart of gold. I would have been mad if my friend had laughed at me, but you just laughed it off and kept on playing.”

These are the qualities we need to be cultivating in our kids.

And follow in your child’s lead, make a new friend, maybe even someone with a disability. No, you will not be an exceptional person for doing that, you will just be a little bit richer for having a new friend.

–Written by Ellen Stumbo, edited by KIT staff.

Ellen Stumbo is the founder of Disability Matters. She is a writer and speaker who focuses on sharing the real -sometimes beautiful and sometimes ugly – aspects of faith, church, disability, parenting, and adoption. Ellen’s writing has appeared on Focus on the FamilyLifeWayMomSenseNot Alone, Mamapedia and the Huffington Post.  Ellen blogs at ellenstumbo.com and you can also find her on twitter and Facebook.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.