EXECUTIVE OVERVIEW

During a recent Individualized Education Program meeting, I was asked to give a talk about my daugh-ter Jillian’s cerebral palsy diagnosis to her classmates. I eagerly signed up to do so, but found myself struggling to find the right approach. Inclusion is so much easier to talk about with fellow advocates and adults. I found myself a bit more challenged when it came to preparing for my first talk to children about this important subject. With the help of an inclusion specialist, we crafted a talk that can be replicated to suit the needs of other children. I encourage parents to follow these steps when crafting a talk:

Share an icebreaker.1. Start the discussion.2. Talk about “What’s the same.”3. Talk about “What’s different.”4. Humanize the disability. 5. Close the talk. 6.

In this report, I go over the material I used to prepare for the talk. Please share your thoughts with me at cindy@abilitycatcher.com.

PROJECT BACKGROUND

Nine years ago, I became a disability advocate. It was not something that I had planned. A visit with my daughter Jillian’s first neurologist left

me thinking that “perhaps there was nothing amiss,” but the second opinion of another neurologist con-firmed that Jillian did have a disability. A year later, the doctors settled on a cerebral palsy diagnosis. My years of managing complex projects in the technology world came to an abrupt end, and suddenly I switched roles to that of a case manager and full-time mother to Jillian.

As a team, the two of us have always pushed the limits. I have found clever ways to get Jillian into therapies when people said she was too young. Our dance bill has been punched at endless physical, oc-cupational and speech therapy sessions, as well as horseback-riding therapy, special needs dance class, and yoga classes. We’ve been to naturopaths, and we have even done cranial sacral and energy work. We have ridden the wave of new medical devices.

I have always thought of my daughter as the poster child of inclusion, and I am the mother behind her making sure I am whacking away obstacles as they come into our field of vision.

Then something happened this year. An inclusion specialist from the Poway School District in San Diego asked if I wanted to talk to Jillian’s class about her

disability. I said, “of course.” This activity was officially added to Jillian’s plan at school. As with the follow-up on all of Jillian’s Individual Education Meetings, I had many to-do items. When the inclusion specialist pressed me for a date when we could go talk to the class, I stalled a bit. Not because I didn’t want to do the talk. I just couldn’t figure out how to do the talk. It is easy for me to talk about inclusion and the benefits of it to an adult population – particularly people work-ing in the field of inclusion. But I had never had this conversation with children.

I wanted not only to talk to Jillian’s classmates about her disability with grace and appropriate lan-guage, but I wanted also to talk to her peers in a way where other parents of special needs children could use my talk as a blueprint to forge this conversation. I thought long and hard about what I would say. I wish I could tell you that I read a book that gave me good advice. Instead, I will tell you that I woke up from a deep sleep one morning and somehow I knew I needed to go to the bookstore to read the Dr. Seuss book called “The Sneetches.”

I found my way to the local Barnes & Noble in the afternoon. I read the story, and knew it was appro-priate. I finally called the inclusion specialist back, I scheduled our meeting with Jillian’s class, and we co-created the talk. The goal was to tell Jillian’s class-mates about her cerebral palsy diagnosis – including

Disability Inclusion with Children in Six Stepsby Cindy McCombe SpindlerFebruary 5, 2013

Parent Advocacy

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seizures that happen very infrequently. In the last part of our planning, I decided that Jillian would be in the classroom during the talk. Some parents in the past have opted not to do this. Personally, I think if you are talking about inclusion you need to include everyone.

When the morning of the talk came, Jillian told me she was a bit nervous. I told her, “I would never do anything to hurt you.” As she trusts me so much, this is all I needed to say. She was fine and ready to embrace the day.

The following section details how we talked to Jillian’s class. I sincerely hope that others can learn from this experience. If you end up doing something similar, please let usknow how it goes.

1THE ICEBREAKER. After Jillian’s class settled in after their lunch recess, the inclusion specialist and I were waiting for them in their

classroom. After a brief introduction, the specialist played the 12-minute illustrated video of “The Sneetches” off of YouTube. We decided watching the video would be more engaging than reading the book. Not only did this provide the perfect backdrop to a rich discussion, but it also served as the perfect story as most of the children in the classroom were not familiar with this story at all.

2 A BRIEF DISCUSSION. After we watched “The Sneetches,” the inclusion specialist asked the following questions:

“Do you think the stars were important? What did if feel like to have a star? What did it feel like not to have a star? “

In a very short period of time, the children in the classroom were saying that the stars did not matter. All people are important and should be included – a person’s character is more important than anything else.

3 ”WHAT”S THE SAME?” The inclusion specialist handed the microphone over to me. I proceeded to ask several questions of the class.

“Before I get started, “ I asked, “I have some ques-tions. How many of you like strawberry ice cream? How many of you like pizza? How many of you like to run? How many of you like cartoons?”

For every question, almost every child’s hand went up in the air. They were interested. They were ready to hear about Jillian’s story.

4 ”WHAT’S DIFFERENT?”When it came to talk-ing about Jillian’s disability, I have to admit that the words were a bit harder to say than I thought

they would be. I have talked about her disability to so many people, in the past, but the words seemed so new in this situation. I was very straightforward. I made the decision before we talked that I would guide this section without input from the class. I didn’t want anything hurtful to be said.

“I wanted to tell you that while Jillian has many parts of her that are the same as you, she has some differences as well. Jillian has a disability called cere-bral palsy. You might see her walk a bit slower. She has an aide in the classroom. You might notice that it takes her a bit longer to do the projects your class is doing. How many of you have seen her write on a keyboard?” The entire class raised their hands.

The hardest part of my conversation was quickly approaching. I knew that I had to do this part in par-ticular with care. “How many of you have been dizzy before?”

The entire class raised their hands.“Because Jillian has cerebral palsy, she can have

seizures. What happens when she has seizures is that her body shakes. She needs to be put on her side, and an adult needs to be with her. If you ever see anything like this, can you make sure she gets help?”

The entire class nodded their heads. “It probably won’t happen, but I just want you to be

aware of it in case it does.”“If you feel down, would you want people to stand

around you and look at you, or would you want some space?” The whole class said they would want space.

The conversation went on a bit further, but not too much further. I wanted to get to the fun part of Jillian’s differences.

“I have some more questions for you: How many of you have run in a race before?”

Jillian was the only one raising her hand.“How many of you have stood up on the back of

a horse before?” Jillian was the only one raising her hand.

Many of the children were ready to talk. They wanted to talk about a grandparent who is using a walker, or of a cousin who also has a disability.

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5 HUMANIZE THE DISABILITY. For the final part of my talk, I brought in some pictures to share with Jillian’s class. I know that for several

months now, they have seen Jillian do things differ-ently than they do. I wanted to show them how rich her life is outside of school.

I put pictures up on a projector. I showed Jillian running, hiking in canyons, and playing with friends. I showed her meeting some famous people with cere-bral palsy. I invited Jillian up to be in front of the class and she was delighted.

You read that right! Jillian was delighted. It sudden-ly dawned on me that Jillian not only has been accept-ing of her disability, but she is proud of it. I was really touched at I watched her eyes sparkle as we painted a much richer landscape of her life than others in her class knew she has lived.

Jillian is hiking with her grandmother in Zion National Park. One of her hobbies is hiking.

Jillian poses for a photo with her mentors Bailey and Quinn Waitley, and her friend John Quinn. All four have cerebral palsy and are enjoying life!

6 CLOSE THE TALK. It was time to end the dis-cussion. I asked the class if they realized what was on Jillian’s shirt.

“A star,” a little girl said.I had them think about the stars in “The Sneetches”

again. Jillian got up, and then passed out large star stickers for her classmates to have. It really wasn’t necessary at that point. Our talk had been successful. I also gave a little sheet of paper out that talked about Jillian’s disabilitiy for the children to share with their parents.

I told Jillian’s classmates that they could always ask me questions about her disability if they had any. The next day, a little girl who sits close to Jillian asked me, “Can other people get cerebral palsy by being around Jillian?” I said, “No, but thanks for asking.”

Jillian’s disability is not hidden. Her classmates see it everyday. But we somehow took away any stigma or question that surrounded it now that she attends school with a classroom of young inclusion ambassadors. My dream is that they will continue to embrace differences beyond the classroom and navi-gate through this world to help create a place where everyone is truly accepted. Someday, when a family member in the future gets diagnosed with a disability, one of these children will no doubt reflect back to the time when they were in a class with Jillian. I am sure they will have kind words of support to offer, and they will certainly know that a person can be happy regard-less of their ability.

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DISCUSSION IDEATopic: Perseverance – Doing Well in the Face of Adversity

You are stronger than you know.“ ”Who is JILLIAN AKERS?(2003 – )Jillian Akers is a multi-faceted 3rd grader who was born with cerebral palsy. Early on, it was unknown if she would be able to walk. From six months on, Jillian has attended numer-ous therapy appointments per week, working on her fine motor, gross motor, and speech skills. She also did therapeutic horseback riding. In January of 2012, Jillian transformed from a patient into an athlete as she ran the Carlsbad Kids Marathon Mile. She is now involved with the Challenged Athletes Foundation. In addition to running, she also enjoys yoga, riding her handcycle, listening to music, and dancing. ABOUT CEREBRAL PALSY:http://bit.ly/UiErV9ASK JILLIAN QUESTIONS:cindo_ma@yahoo.com

HOW HAS JILLIAN SHOWN PERSEVERANCE?Jillian has never complained about having to work hard. She has participated in more than 800 various appointments, and she has always done more than what is asked of her. When Jillian asked if she could run a kids race, her family took her to a track to see how far she could run. To their amazement, Jillian ran three laps – ¾ of a mile her first time out – and today runs an average of ½ mile per day.

NEVER GIVE UP. Perseverance is a character trait that allows people to do more than what they think they are capable of doing. What difficulties have you had? How do you think you could push through these difficulties?

This is the parent piece that I made for Jillian’s classmates. They have a notebook that has similar notes in it about people throughout history.

Cindy McCombe Spindler is the founder and president of AbilityCatcher, a company with the goal of humanizing the way the world thinks and treats individuals with differing abilities. She lives in San Diego with her husband and two children. Her daughter Jillian has cerebral palsy.