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Spring 2019

Spring 2007 Table of Contents
Versión Español de este artículo (Spanish Version)

By The Bubel/Aiken Foundation and Kimberly Resh Reprinted with permission from Hand in Hand, the Pennsylvania Deafblind Project, Information Update, Fall, 2006 .

Abstract: Third grade students author and publish a book about friendship and acceptance after having a student with multiple disabilities, including deafblindness, in their classroom. Mikayla's mother includes a personal note about their experience with full inclusion.

Key words: family, deafblind, disability, inclusion, friendship, acceptance, children, parenting

The Bubel/Aiken Foundation (Clay Aiken's charity for the inclusion of children with disabilities) recently gave a grant so a group of third-grade authors could publish a book about friendship and acceptance. Our Friend Mikayla, the story of a child with severe developmental disabilities, who finds true friendship and connection with her typical peers, will be published this fall.

Written and illustrated by third-grade students at the Lower Nazareth Elementary School, Nazareth, PA., Our Friend Mikayla, is an honest portrayal of the children's first reactions to Mikayla, their barriers to acceptance and finally the deep friendship they formed with her. Mikayla, now 11, was born with profound brain damage resulting in spastic quadriplegic cerebral palsy, severe mental retardation, seizure disorder, legal blindness, hearing impairment, and numerous medical conditions related to her disabilities. Despite the severity of Mikayla's disabilities, her parents strive to give her as normal a life as possible. When they moved to Pennsylvania four years ago, the idea of full inclusion for a child with severe developmental disabilities was relatively new. Yet in keeping with their own personal philosophy, they requested that Mikayla be included in a regular first grade class.

Drawing from book, person in wheel chair reaching out to a person who is standing.What they found was that Mikayla's classmates accepted Mikayla and began to see her as just like them. Their relationship with Mikayla and their journey to acceptance inspired the book. Our Friend Mikayla became the class project, mainly because Mikayla's friends felt they had an important message to share with other children. Their goal was to teach other kids that, From Mikayla, we've learned that people with disabilities aren't really different. It doesn't matter if your friend is in a wheelchair. Their disabilities don't mean you cannot be friends. Having a friend with a disability is cool.

The children have dedicated Our Friend Mikayla to all people with disabilities and their friends. When they chose the dedication, one of the children realized that might mean they were dedicating the book to everyone in the world.

The book will be sold on The Bubel/ Aiken Foundation's website and all net proceeds will help support the Foundation's efforts towards full inclusion. The book will be available at this October.

The Bubel/Aiken Foundation provides services and financial assistance to promote the full integration of children with disabilities into the life environment of those without. The Foundation strives to create awareness about the diversity of individuals with disabilities and the possibilities that inclusion can bring. To learn more about The Bubel/ Aiken Foundation or ways to get involved visit the website at .

Personal Note from Mikayla's Mom, Kimberly Resh

While Mikayla doesn't have any immediate life threatening conditions, doctors have always predicted a decreased life expectancy for her. They warn that she will probably eventually suffer a severe aspiration event that will take her life. As a parent, it is impossible to prepare for the loss of your child. It's difficult to even think of. We can't help but worry about the eventuality and wonder how long we will have with our beautiful daughter. When asking a friend how long she thought Mikayla would live, she replied simply, as long as she has a purpose. Her words touched my heart, and often bring me comfort.

More children's drawing from the bookI also think most parents wonder why any child would be affected by a disability. My personal belief is that the world needs to be filled with different types of people with varying abilities. This diversity builds understanding, compassion and acceptance, making us all better human beings. While my theory may have started as a means by which to justify my own daughter's disabilities, her inclusion in a regular classroom has confirmed my thinking.

We have always favored the idea of inclusion, yet in the beginning we were afraid. Like all parents, whether their children have disabilities or not, we were scared that Mikayla would not be accepted. From time to time we still worry, but in every instance our fears are unfounded, as children are the most accepting of Mikayla's disabilities. They are innocent, pure and unbiased by society's perception.

Mikayla's friends invite her to roller-skating parties and push her around the rink in her wheelchair. At bowling parties they argue over whose turn it is to help her shove the ball down the adaptive ramp. I must admit we were greatly amused when Mikayla was invited to a rock climbing party. Still, I took her so she could be with her friends, particularly the birthday girl who wanted Mikayla at her party regardless of her inability to climb. Kids never cease to pleasantly amaze me. When one girl wanted to set-up a playdate with Mikayla and I asked her what she'd like them to do, she merely wanted to read to her. Now she's trying to get me to agree to a sleepover&I guess it'll be at our home!

As a parent, I truly understand and respect every family's decision regarding placement for their child. While inclusion is the right choice for Mikayla and our family and I'd encourage others to give it a try, I realize other children may need alternate educational settings to succeed. If this were the case, I'd hope their parents would seek out other opportunities for inclusion in their community. While children with disabilities benefit from these inclusive experiences, so do their non-disabled peers. Mikayla has silently taught her friends some of life's most important lessons.

I will always wish there were a way to repair the damage to Mikayla's brain and allow her to fully experience all life has to offer. Yet, she has a most important purpose. Despite her profound disabilities, my daughter couldn't make a greater contribution to this world. She is a gift we share with others. I hope all parents do the same.