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Kids Like You And Me: Megalencephaly

Kate Ter Haar

"The Pea Green Boat" provides a unique and nurturing place to hear stories about how it feels to be excluded, mocked, and bullied because you’re different, in color or ability – or how it feels to be accepted despite those differences. This week, Annie facilitates a conversation about megalencephaly.

What does Montana’s limited ethnic and cultural diversity mean to the social development of the state’s children? Nearly 90 per cent of Montana’s children have little reason to learn, to think, or to act beyond their individual experience as a member of the majority.

Fifteen-year-old Kaylor has megalencephaly. He sits in a wheelchair and uses technology (an app on his iPhone), gestures, and sign-language to communicate. Annie met him at Missoula's Child Development Center. In between audio fist bumps and a few vigorous knee slaps, she talked to Kaylor, his siblings, and staff members at CDC. She learned about megalencephaly. She also found out that, although Kaylor needs extra support (to understand and navigate tasks at school, at home and in the community), he is a person who wants to be included and receive hugs, just like you and me.

Megalencephaly - Capillary malformation:  Individuals with this diagnosis have growth abnormalities that result in an unusually large head, disproportionate with the size of the person’s body. This also affects the person’s brain, which leads the diagnosis to be categorized as multiple disabilities, because it can cause delays across all areas of development, including physical, communication, and cognitive or “thinking” skills. 

Programs in the Kids Like You and Me series can help build empathy and teach compassion and acceptance. The programs can also be a resource for parents, caregivers, and teachers to help begin and moderate relevant conversations.

Greater Montana Foundation

Support for MTPR is provided by the Greater Montana Foundation – encouraging communication on issues, trends and values of importance to Montanans.

Chérie Newman is an arts and humanities producer and on-air host for Montana Public Radio, and a freelance writer. Her weekly literary program, The Write Question, is broadcast on several public radio stations, and available online at PRX.org and MTPR.org.
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