1. Parent Advocacy
Disability Inclusion
with Children in Six Steps
by Cindy McCombe Spindler
February 5, 2013
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:
1. Share an icebreaker.
2. Start the discussion.
3. Talk about “What’s the same.”
4. Talk about “What’s different.”
5. Humanize the disability.
6. Close the talk.
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.
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PROJECT BACKGROUND disability. I said, “of course.” This activity was officially
ine years ago, I became a disability advocate. added to Jillian’s plan at school. As with the follow-
It was not something that I had planned. A visit up on all of Jillian’s Individual Education Meetings, I
with my daughter Jillian’s first neurologist left had many to-do items. When the inclusion specialist
me thinking that “perhaps there was nothing amiss,” pressed me for a date when we could go talk to the
but the second opinion of another neurologist con- class, I stalled a bit. Not because I didn’t want to do
firmed that Jillian did have a disability. A year later, the talk. I just couldn’t figure out how to do the talk. It
the doctors settled on a cerebral palsy diagnosis. My is easy for me to talk about inclusion and the benefits
years of managing complex projects in the technology of it to an adult population – particularly people work-
world came to an abrupt end, and suddenly I switched ing in the field of inclusion. But I had never had this
roles to that of a case manager and full-time mother conversation with children.
to Jillian. I wanted not only to talk to Jillian’s classmates
As a team, the two of us have always pushed the about her disability with grace and appropriate lan-
limits. I have found clever ways to get Jillian into guage, but I wanted also to talk to her peers in a way
therapies when people said she was too young. Our where other parents of special needs children could
dance bill has been punched at endless physical, oc- use my talk as a blueprint to forge this conversation. I
cupational and speech therapy sessions, as well as thought long and hard about what I would say. I wish
horseback-riding therapy, special needs dance class, I could tell you that I read a book that gave me good
and yoga classes. We’ve been to naturopaths, and we advice. Instead, I will tell you that I woke up from
have even done cranial sacral and energy work. We a deep sleep one morning and somehow I knew I
have ridden the wave of new medical devices. needed to go to the bookstore to read the Dr. Seuss
I have always thought of my daughter as the poster book called “The Sneetches.”
child of inclusion, and I am the mother behind her I found my way to the local Barnes & Noble in the
making sure I am whacking away obstacles as they afternoon. I read the story, and knew it was appro-
come into our field of vision. priate. I finally called the inclusion specialist back, I
Then something happened this year. An inclusion scheduled our meeting with Jillian’s class, and we
specialist from the Poway School District in San Diego co-created the talk. The goal was to tell Jillian’s class-
asked if I wanted to talk to Jillian’s class about her mates about her cerebral palsy diagnosis – including

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seizures that happen very infrequently. In the last part ”WHAT”S THE SAME?” The inclusion
of our planning, I decided that Jillian would be in the specialist handed the microphone over to me. I
classroom during the talk. Some parents in the past proceeded to ask several questions of the class.
have opted not to do this. Personally, I think if you are “Before I get started, “ I asked, “I have some ques-
talking about inclusion you need to include everyone. tions. How many of you like strawberry ice cream?
When the morning of the talk came, Jillian told How many of you like pizza? How many of you like to
me she was a bit nervous. I told her, “I would never run? How many of you like cartoons?”
do anything to hurt you.” As she trusts me so much, For every question, almost every child’s hand went
this is all I needed to say. She was fine and ready to up in the air. They were interested. They were ready
embrace the day. to hear about Jillian’s story.
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The following section details how we talked to
Jillian’s class. I sincerely hope that others can learn ”WHAT’S DIFFERENT?”When it came to talk-
from this experience. If you end up doing something ing about Jillian’s disability, I have to admit that
similar, please let usknow how it goes. the words were a bit harder to say than I thought
they would be. I have talked about her disability to
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so many people, in the past, but the words seemed
THE ICEBREAKER. After Jillian’s class so new in this situation. I was very straightforward. I
settled in after their lunch recess, the inclusion made the decision before we talked that I would guide
specialist and I were waiting for them in their this section without input from the class. I didn’t want
classroom. After a brief introduction, the specialist anything hurtful to be said.
played the 12-minute illustrated video of “The “I wanted to tell you that while Jillian has many
Sneetches” off of YouTube. We decided watching the parts of her that are the same as you, she has some
video would be more engaging than reading the book. differences as well. Jillian has a disability called cere-
Not only did this provide the perfect backdrop to a rich bral palsy. You might see her walk a bit slower. She
discussion, but it also served as the perfect story as has an aide in the classroom. You might notice that
most of the children in the classroom were not familiar it takes her a bit longer to do the projects your class
with this story at all. 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.
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The conversation went on a bit further, but not too
A BRIEF DISCUSSION. After we watched “The much further. I wanted to get to the fun part of Jillian’s
Sneetches,” the inclusion specialist asked the differences.
following questions: “I have some more questions for you: How many of
“Do you think the stars were important? What did you have run in a race before?”
if feel like to have a star? What did it feel like not to Jillian was the only one raising her hand.
have a star? “ “How many of you have stood up on the back of
In a very short period of time, the children in the a horse before?” Jillian was the only one raising her
classroom were saying that the stars did not matter. hand.
All people are important and should be included – a Many of the children were ready to talk. They
person’s character is more important than anything wanted to talk about a grandparent who is using a
else. walker, or of a cousin who also has a disability.
© 2013 AbilityCatcher | www.abilitycatcher.com

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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 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!
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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-
Jillian is hiking with her grandmother in Zion National gate through this world to help create a place where
Park. One of her hobbies is hiking. 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.
© 2013 AbilityCatcher | www.abilitycatcher.com

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Topic: Perseverance – Doing Well in the Face of Adversity DISCUSSION IDEA
“ You are stronger than you know.
Who is JILLIAN AKERS?
(2003 – )
” HOW HAS JILLIAN SHOWN
PERSEVERANCE?
Jillian Akers is a multi-faceted 3rd grader who Jillian has never complained about having
was born with cerebral palsy. Early on, it was to work hard. She has participated in more
unknown if she would be able to walk. From than 800 various appointments, and she has
six months on, Jillian has attended numer- always done more than what is asked of her.
ous therapy appointments per week, working When Jillian asked if she could run a kids
on her fine motor, gross motor, and speech race, her family took her to a track to see how
skills. She also did therapeutic horseback far she could run. To their amazement, Jillian
riding. In January of 2012, Jillian transformed ran three laps – ¾ of a mile her first time out
from a patient into an athlete as she ran – and today runs an average of ½ mile per
the Carlsbad Kids Marathon Mile. She is day.
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: NEVER GIVE UP.
http://bit.ly/UiErV9 Perseverance is a character trait that allows people to do more than what they
ASK JILLIAN QUESTIONS: think they are capable of doing. What difficulties have you had? How do you
cindo_ma@yahoo.com 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.
© 2013 AbilityCatcher | www.abilitycatcher.com