“The hardest thing about having an intellectual disability is the loneliness.” – John Franklin Stephens
Over the past 12 years, I have learned this is true for many of our kids with intellectual and developmental disabilities– and even for their parents. When my daughter, Samantha, began kindergarten, I didn’t know anyone at her school. I sort of muddled through the year and wondered how our family would ever fit in. Sam was different, which made me different, and with the challenges of having a child with special needs, I wondered how or if I could ever be an active part of the PTA and I wondered if and how Sam would ever have any friends.
As a parent of a child who needs special education services, you attend several meetings about your child and you are bombarded by so many things you never dreamed about. The last thing you want to see is your child sitting alone on the playground, but this is exactly what Sam was doing. She was alone in her own world.
When Sam entered 1st grade LIFE Skills, the school year began like her kindergarten year. She and her classmates were still alone. No one ever approached them, and they were feared and misunderstood. This observation became real one day when I was volunteering at school and I overheard a child say, “She looks mean. She looks weird.” Sam couldn’t hear what her peer had said about her– but I did, and it really bothered me.
My feelings were hurt, and this is when I decided that something needed to be done to change this view of my child. At first, I struggled to find a way to reach out. I cried and felt angry, wondering why Sam was meant to be different. It wasn’t fair that she had no voice, and all I wanted was a chance to show others what gifts she had to offer. Samantha was born with multiple disabilities as a result of a chromosome 18q- deletion. Sam was born with a cleft lip and palate.
She is deaf, nonverbal, has ADHD, autism and is cognitively and motor delayed; however, Sam is so much more! Sam is sweet, funny and loves to swim, surf, swing and ride horses. She also loves music and books and manages to inspire anyone who takes the time to know her. No one would know this by just looking at her.
Finally, I decided to create a friendship program called Special Buddies. In this program: kids wouldn’t be afraid of kids with disabilities anymore! They would be encouraged to play together on the playground, visit with each other weekly during free time, create arts and crafts and attend special monthly events together.
I had developed a vision, mission and goals, contacted our Special Education Director and our school PTA President who spoke to our school principal. After a few weeks my program had been approved!
The next step was to send out registration forms to our entire elementary school. We did so, and received a response from 86 students. Our first year we had a ratio of one child with special needs to four typically developing children.
By our second year, the program became so popular, we grew to 286 interested students. The only problem we had was that there weren’t enough children with disabilities in our school to meet the demand.
Year after year, the program blossomed and became a positive learning experience for not only the children who were buddies but for their parents as well. The best thing about the program was that my vision, mission and goals were being met. Kids weren’t afraid of our kids with disabilities anymore! The students learned respect, acceptance, leadership, unity and the value of each other’s gifts.
If your child has special needs, you might consider starting a similar program at their school. On a personal level, the program gave my Sam an opportunity to be understood, interact with typically developing peers, become more engaged with others in play and gain a very true friend.
About the Author
Monica is married to her best friend, John, and is a proud mommy to her sweet, beautiful 12 year-old daughter, Samantha. Samantha was born with multiple disabilities as a result of a chromosome 18q- deletion. Samantha is Monica’s inspiration for the many volunteer projects that she participates in for children and adults with disabilities. Monica has a background in ER Nursing and Cardiology Research Nursing, and she is honored to be a contributor to Global Genes | RARE Project.