JAY’S DIARY:

ON PARENTING A CHILD WITH A DISABILITY

PODCASTS: ITUNES · GOOGLE
PRODUCED BY GRACE GREGORY
In her work as a creative producer for ENDPAIN, Grace draws on her degree in American Studies as well as her experience writing, acting, photographing, and working in radio. She strives to bring compassion, empathy, and thoughtfulness to each ENDPAIN project she works on.
Music By Henry Hall
Henry Hall is a musician and performer based in Los Angeles, California. Listen to him on Spotify, Apple Music or any online music platform.
Featuring Jay Dean
Jay Dean is a husband and father-of-two currently living and working in Minneapolis, MN. He is a passionate middle school-level educator and has worked in both public and private schools on the East Coast, West Coast, and Midwest. Right now, he is the Middle School Assistant Director at The Blake School in Hopkins, MN. He loves long-distance running, reading, watching good films, listening to music and, especially hanging out with his wife and kids.
Jay Dean
Jay Dean is a husband and father-of-two currently living and working in Minneapolis, MN. He is a passionate middle school-level educator and has worked in both public and private schools on the East Coast, West Coast, and Midwest. Right now, he is the Middle School Assistant Director at The Blake School in Hopkins, MN. He loves long-distance running, reading, watching good films, listening to music and, especially hanging out with his wife and kids.
Jay's Diary

SOUNDCLOUD | TRANSCRIPT

When Jay and Karen Dean were pregnant with their first child, they took a standard prenatal test to determine if the baby would be born with spina bifida, and the results were negative. But in January of 2010, Lucas Dean was born with a hole in his back where his spinal cord had not fused together completely—a condition called spina bifida. Because of this neural tube defect, Lucas doesn’t have feeling in his legs and mostly gets around in a wheelchair, but he does not let that limit him; he skateboards, skis, plays basketball, takes swimming lessons, acting classes, and plays piano.

Lucas just turned eight, and as he approaches his teenage years, he is beginning to vocalize frustration that his body doesn’t work the way his able-bodied friends’ do. As parents, how do Jay and Karen support Lucas through this transitional moment? How do they nurture his joyful and fearless spirit, while honoring his frustration and pain? This diary explores those questions.

RESOURCES:

Courage Kenny Rehabilitation Institute: This is where Lucas plays basketball and takes swimming lessons. This is also the place through which he skis. 

HopeKids: This organization is aimed at providing fun experiences for families of kids with disabilities. I'll be running a 10k in June to raise money for this organization.

Gillette Children's Specialty Healthcare: This is where Lucas gets all of his care. We go to appointments with his neurosurgeon, orthopedic surgeon, urologist, etc. He also does his physical therapy through Gillette.

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