Sunday was World Autism Day, a day of events and advocacy worldwide to celebrate the lives of those with autism and raise awareness. As with many other disabilities, autism awareness is very limited in Tanzania and therefore people who have autism are often isolated, misunderstood and excluded from activities inside and outside of their homes.
For the past few years on World Autism Day, Mosaic fellows have shared updates about a boy named Sheddie who attends BCC’s Moshi 2 center. He has complex sensory needs and when he first came to BCC, he was non-verbal and had no method of communicating his wants and needs. When Meritt Buyer wrote about him last year, Sheddie was learning to speak and would utter a soft and endearing “Bye!” as a visitor left the center. Now Sheddie can communicate when he is hungry, thirsty or needs to use the restroom. He has learned to sing songs with his friends in the center and to say the morning prayer. Through the patience, encouragement and dedication of BCC staff, Sheddie has continued learning to express himself and has made life-changing progress since he was non-verbal three years ago.
This progress that Sheddie has made at the center is keenly felt by his family at home. Before Sheddie began attending BCC, his family did not know anything about autism or how to interact with Sheddie in a way that is meaningful for him. His father has told me that he doesn’t think he was treating Sheddie well enough before because he would scold Sheddie for some of the behaviors that were foreign to him. Now, his father said, “At home we do small exercises with him that we learn from the center. We play together and talk together as a family. Before BCC, Sheddie was hiding himself and didn’t want to interact with others. He was living a lonely life. But now he is not.”
Sheddie looks forward to coming to the center to learn and connect with the community there each day. “Now Sheddie knows that there is school,” his father explained. “In the morning when he wakes up, he bathes and has breakfast and knows that he is going to school. Even on Saturdays and Sundays when Sheddie wakes up, he wants us to bring him to school.”
Sheddie’s family has learned to understand Sheddie in a completely new way and continue to witness Sheddie flourish. Thanks to the love of those around him, Sheddie is no longer living a lonely life, but one filled with hope and possibility.
One day last year, my aunt called me excitedly and implored me to read a book that she had just finished. It’s called The Reason I Jump and was written by a thirteen year old boy with autism named Naoki Higashida. It is a window into his thoughts, and in turn provided a window for my aunt into my cousin’s thoughts, who also has autism. One of my favorite quotes from the book is
On our own we simply don’t know how to get things done the same way you do things. But, like everyone else, we want to do the best we possibly can. When we sense you’ve given up on us, it makes us feel miserable. So please keep helping us, through to the end.
It offers a message of hope and potential, and reminds me that although there is a large amount of stigma surrounding disability in Tanzania and there are many challenges that accompany working with people with disabilities in this country, the staff of BCC will continue helping the children and young adults we serve, through to the end. We will continue celebrating victories like Sheddie learning to sing and catching a ball. We will never stop advocating for the people we serve, educating families and communities, and helping each and every child to do the best he or she possibly can. And that is definitely something to celebrate!
By Alex Bailey