Meeting Them “Where They Are”

When I was coordinating a Unified Theater program in North Carolina, there was one participant, whom I will call Katie, who, at first, really did not want to be there. She complained about the games, the snack, the skits… really whatever she could find to complain about. Each week, I was sure that she was not going to want to come back the following week. But alas, there she was. Katie happened to have autism, and she was very particular about how things needed to happen, or else she was thrown completely off.

There was another guy in the group, whom I will call Robert, who really got on Katie’s nerves. Robert tended towards self-stimulatory behaviors, typically using a pen cap to soothe himself. Katie really did not like that, and she would often yell, “Robert! Why are you always playing with that pen cap?!” It was interesting to me that Katie had difficulty understanding why Robert often had his pen cap with him, as I thought, “Well, Katie has autism, too. Doesn’t she get it?” (This was a few years ago, before I really understood that no individual is alike, and certain behaviors often exhibited by people with a disability are not exhibited by all people with that disability.)

Katie also had difficulty with our schedule. Rehearsal ended at 8:00 each night, and Katie was very aware of that time. She was constantly asking me what time it was, and at 7:55, she would always ask, “Isn’t it almost time for us to leave now?” I interpreted this as a dislike for our program, and I figured she was excited to leave. Later, I learned that her dependence on schedule was part of her nature, that she really would benefit from a posted agenda, and that she sometimes needed a gentle reminder that she still had five minutes to give us her attention and best performance she could.

About halfway through the season, the students spent a week on Spring Break. When they came back, things seemed to have changed. Robert had spent his week in India with his parents, visiting extended family who lived there. All of a sudden, Katie actually wanted to spend time with Robert, wanting to know all about the animals he saw in India, the places he visited, and the food he ate. Katie turned out to be quite the travel enthusiast! We had finally figured out a way to reach her.

Once we knew what Katie liked (as opposed to what she disliked), we were able to engage her in so many more exciting ways. We rewrote one of the skits to involve a tiger, her favorite animal. We included a travel theme to our plot. She was thrilled to be able to help plan it. Additionally, her artistic skills came in handy when she volunteered to produce the group’s t-shirt design.

As we reached the end of the program, our group was getting more and more excited for the final performance. Katie approached me and asked if I wouldn’t mind if she said a few words about her experience with Unified Theater. I was apprehensive, due to her rough start, so I asked her mom to please help her write a script to ensure that the speech would be positive and appropriate. When the end of the performance came, I introduced Katie to the audience and announced that she would like to tell them about her time with Unified Theater. Katie blew us all away– her speech described her difficulty at first, how she had needed help working out her difficulties with Robert, and how she had struggled with adjusting to a flexible rehearsal schedule. Katie went on to describe how she and Robert had become close friends, bonding over their interest in travel, art, and animals. It was at that moment that I realized that inclusion does not just facilitate relationships between children with disabilities and their typically-developing peers; it can also facilitate relationships between similarly-challenged kids. A culture around inclusion and acceptance gives everyone a place to belong, and friendships form between the most unlikely pairs.

–Written by Elise Hopkins, KIT Blog Writer/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.

To all the Moms Out There: THANK YOU!

As you likely know, Mother’s Day was this past weekend.  I am constantly reminded by how selfless so many of the world’s moms are. Last week was Teacher Appreciation Week at my school, and I cannot tell you how many mothers there were working tirelessly to cook, decorate, and greet us to thank us for the work we do for their kids. One morning, I took a moment to reflect on how lucky I am, as a teacher, to have the opportunity to work with some of the most amazing mothers to my students. They give their children everything they have, and then they try to find more. They also take their partnerships with our school very seriously. I see some of our school’s moms meeting with our principal as part of our Parent Advisory Council before 7:00 AM one day of every single week, volunteering to make copies for teachers weekly, and cheering at our soccer games (even when they don’t have kids of their own on the team). These mothers have absolutely shown all of the students and teachers at our school that they are here to help us, and that they care enough to spend their time, resources, and energy on providing whatever support to their children they can.

In addition to helping me feel supported at my job, these moms are here for their kids no matter what. When kids are struggling in school, their moms drive them to school early to get extra help from teachers. When they misbehave in school, I know I can trust that a phone call to mom will result in an apology the next day. I love being able to text my students’ moms to check in on the day and to make sure everything is going okay at home. Seeing the ways that my school’s moms support their students has reminded me of all of the amazing things my mom has done for me throughout my life. I am so lucky to have been able to lean on my mom anytime I needed a listening ear, someone to nurse me back to health, some excellent advice, someone to read my many papers and projects throughout schooling, or just a warm hug.

Especially in the disability world, many moms have given up so much to fight for everything their children need. It is the most honorable work, and I am in awe of the selflessness and humility that these mothers demonstrate when they do absolutely everything in their power to demand the best for their children. Moms, you know your children best. Continue to ask for what you know they need. Your voices matter, and we are so happy to have you by our sides to help your children reach success in all of their endeavors. Keep up the fight! Happy Mother’s Day!

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(Note: I am thrilled when I see how many dads are taking a more active role in their children’s lives, and I acknowledge that though these roles are most regularly filled by women, there are many families where dads take over a lot of child-raising duties. Thanks to all of you dads, too!)

 

–Written by Elise Hopkins, KIT Blog Writer and 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.

Laura Panetta, International Inclusion Advocate, age 7

Isn’t the universe cool? Recently here at Kids Included Together, we were notified that we have been granted special consultative status to the Economic and Social Council of the United Nations. This makes us part of a select group of non-governmental organizations (NGOs) that can contribute to information dissemination, awareness, policy advocacy, and development education, and we can contribute our technical expertise on an international level. We are pretty excited about this opportunity that will help us get closer to our vision: a world where children of all abilities are welcomed and accepted in their communities.

Here’s the cool part – the same day I received this special letter, I also came across a beautiful depiction of inclusion drawn by a 7-year old inclusion advocate named Laura. I found out that she drew the picture on a plane, on the way home from Geneva, where she was testifying at the United Nations as part of the discussion of Article 24 of the Convention on the Rights of Persons with Disabilities. I am told (by Laura’s mom) that 7-year olds are not the typical speakers at these events. Wanting to know about the UN hearings, I asked Laura if she would write a blog post about her experience there, so that I could learn from her. I can’t resist posting the actual writing she did, but since it’s not accessible that way, I am also transcribing it below the image.

I am grateful to Laura for sharing her experience with us, and proud of her for speaking in a foreign country (in front of a bunch of adults) and speaking her mind about the need to include everyone. I have a feeling that Laura thinks that adults are making this inclusion thing much harder than it needs to be, and I think I would have to agree with her.

~ Torrie Dunlap, CEO, Kids Included Together

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laura at UN

 

 

 

 

 

 

 

 

United Nations Geneva, Switzerland
By Laura Panetta, 7 years old

My mum and me travelled from Perth, Australia to Milan, Italy and then by train. The train went to Geneva. We went to the United Nations to listen to people talk about the right to learn with everybody else. This is called inclusion in education.

I heard a girl say that not feeling welcome at school was the hardest thing. I also heard a woman say that they lived in four different countries and it was hard to find a school for her daughter. In Switzerland the only option was to send her daughter to a special school because the other schools wouldn’t let her go there. Children with disability should be able to go to the same school as every-body else and learn and play together. The United Nations is an important place where countries decide how to do things better. All countries need to be better at including people with disability.

Laura drawing -2

Laura drew this picture of her and her brother playing with a toy car outside on a sunny day. Julius is 5, has Down syndrome, and wears cool orange glasses. The words in the photo say, “People with disabilities should have a right to be included.”

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.

Golden Moments

I have heard the stories from other families who tried to sign their child with a disability up for a class (gymnastics, music, dance, etc) or even preschool – and have been met with a deer-in-the-headlight look. They have been given a myriad of excuses of why they can’t accept their child in this class or that preschool. They have been turned down or made to feel like there is no way it could work.

I’m thankful that, knock on wood, to date this has not been our experience.

GoldenMoments3Kayla hasn’t done a lot of extra activities but for the few things we have done, there haven’t been any issues with me signing Kayla up for a typical class.

A few years ago Kayla took a ballet class at the YMCA with her best friend (who also has Down syndrome). It was a small class, I think only about 5 girls. But there was never any hesitation about Kayla and her friend having Down syndrome and being in this class.

GoldenMoments_dance4Last year I brought Kayla on base to participate in the Missoula Children’s Theater. We showed up for auditions like everyone else. I didn’t call ahead of time to ask if there would be any issues with Kayla having Down syndrome. The only thing I asked them to do after watching the first rehearsal was to slow down one of her sentences because her speech isn’t as fast as her peers. They had no problem with that.

I again brought her on base last week for another Missoula Children’s Theater production, and again, we just showed up with the intention of participating.

GoldenMoments_danceShe took a drama camp this summer with Creative Spark for the Arts and again, I had no problem signing her up for this camp. There wasn’t any hesitation on their part with having Kayla participate in the 2-week camp.

I think it’s important for Kayla to participate in a wide range of activities that involved her peers with and without disabilities. It’s important for her to attend the summer camps that are just for people with disabilities so she is amongst peers that are alike her in that way – and it is just as important for her to be accepted, included, and involved in events and camps and classes that aren’t disability-specific and to be with her peers who don’t have disabilities.

My Golden Moments have been watching her participate, flourish, and make friends in both of these types of environments … and to have something that I don’t have to advocate for her to be included in.

GoldenMoments_familyportraitShe’s just there – involved like anyone else. And that, to me, is a Golden Moment.

— Written by Michelle, author of Big Blueberry Eyes and parent of two. Michelle Helferich is mom to Kayla, 11, and Lucas, 7. Kayla has Trisomy 21 (Down syndrome), ADHD, and Celiac disease. She works part-time as a BabyNet Parent Connection with Family Connection of SC. Michelle’s been blogging at Big Blueberry Eyes since 2006 and was a 2013 finalist in About.com Readers’ Choice Favorite Special Needs Parenting Blog. See her original “Golden Moments” post here!

“Please, Spare Kids with Special Needs the Pity”

I recently came across a pretty old blog post written by Ellen Seidman from Love That Max. It was titled “Please, Spare Kids with Special Needs the Pity” and critiqued an Irish song called “Unlucky One,” written about a child with Cerebral Palsy. I love Ellen’s writing. She shares her perspective unapologetically and never stops advocating for her son. She is truly changing the landscape for children with special needs by sparking conversation about attitudes like this. My thoughts on this topic are as follows:

We need to stop seeing children with disabilities as people we should feel sorry for. Their disabilities are a part of who they are and how they see the world, but they are so much more than that. When we think of them as the “other,” the people we should feel sorry for, we lose the true human connection we could have had with them. As adults, we need to set a good example by respecting each other’s differences instead of thinking others’ differences are pathetic. True inclusion will happen once we see our peers with special needs as complete equals who do not need our pity. My favorite part of Ellen’s piece: “Our kids deserve respect and equal treatment, not pity.”

Please give Ellen’s post a read:

I have an allergic reaction to pity for Max. When people look at him as if he is pathetic (aka The Pity Stare), or cock their head and say “Awwwwww…” if I mention he has cerebral palsy—even as Max is standing there, looking perfectly happy—my face turns a little blotchy, I have to swallow hard, I get a bit prickly.

Read more here.