As the evenings become cooler, I feel summer slowly drifting into our rearview. I’m not ready for it to be over. While I do love all the seasons, this summer was exceptionally sweet as we reunited with family states away that we haven’t seen during the pandemic. Like many families reuniting, our home became a place where we could gather again. It was a time of strengthening bonds, laughter, new experiences, remembering loved ones gone, and even a space for correction. One of my greatest joys was getting to spend time with my great nephew.
Ten years ago, Amar’e changed our lives as he entered the world. He suffered a stroke shortly after his birth. He shouldn’t be here, but the purpose of his life is greater than the initial reports assigned to him. The stroke impacted his neurodevelopment, ability to speak and walk, but it did not break his spirit. Amar’e is curious about the world around him. He loves to engage with family and friends, play with cars, and be read to. He has strong opinions about the clothes he likes to wear and loves a good compliment when he has a fresh haircut. His smile lights up a room. Like all children, he can be mischievous, a bit witty, and choose not to complete a task that he is able to when asked. Amar’e communicates with the world through the look in his eyes, his facial expression, the sound of his voice, and the movement of his body.
My children were young the last time they were with Amar’e. In preparation for his coming, we talked about his abilities and ways to play and connect with him. There were characteristics that I forgot to mention that became topics of discussion and learning opportunities in real time. My niece (his mother) helped them experience his world. She invited each of them to sit in his wheelchair and explain what it felt like to them. She taught them how to help with his g-tube feeds. Most of all, she taught them that he liked to do all the same things that they liked; it just looked a little different. During the week-long visit, they jumped on the trampoline, ran through splash pads, observed tigers at the zoo, and even took a trip to the museum with their cousin.
Creating a nurturing environment to be a curious learner while maintaining an emotional safe space for my niece and Amar’e was important to me. At first, the children were apprehensive. We had to teach them how to engage and ask questions when they wondered about a particular behavior, rather than stare. This called for honest communication and becoming a student of his experience. During our time together, I witnessed a small fraction of their daily routine in our travels from balancing his medical needs and encountering warm, helpful strangers, to navigating limited changing facilities and experiencing discrimination and unimaginable stares from adults.
We often think of diversity and inclusion through the lens of race, but it is much more. This includes differing abilities. To help our children connect to the individual in front of them, we must teach them how to engage with empathy while safely holding the heart of a new friend. This requires the adults in their lives to model this behavior, provide prompt correction when actions or words are hurtful, and in the case where an individual has limited expressive language, ask the parent or primary caregiver how to best engage with the child in front of us. Our eyes are drawn to what seems different, but for the person on the other side of our gaze, it is uncomfortable and often hurtful.
Each of us has a great and distinct sphere of influence. As our children get ready to return to school, let us use that influence to teach them how to be a friend to other children living with disabilities. Let us be intentional about teaching them that they are unique individuals and are worthy of love, empathy, accommodation, education, connection, play, dignity, advocacy, and respect. Let us rise to the challenge of sitting in awkward teachable moments. When we don’t know where to begin or need to reinforce positive character traits, let us utilize resources available at the library or the tip of our fingers. Most importantly, let us be worthy of imitation as we model for our children how to love our neighbor.
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About Jeane N. Liburd, MA, CCLS
Jeané Liburd has worked in the field of child Iife since 2005. She earned a master’s degree in marriage and family therapy and is trained in play therapy. She currently serves as an adjunct instructor for Liberty University. Throughout her career, she has provided services for children and families in various settings including hospitals, pediatric hospice, and community programs. The focus of her work is supporting children and families who have experienced illness, grief, and loss.