Like most Americans, until I was directly affected by a child with a disability, I didn’t know much about the subject.
Now it’s become a huge part of my life. It’s why I know October is both Down Syndrome Awareness Month and Disability Awareness Month.
I was thrust into this world when my son was born in 2010. My husband and I found out he had Down syndrome when he was just a few days old. Though devastating at the time, the diagnosis has changed my life in the most amazing ways.
I work in the field, I advocate, I volunteer, I study disability history and policy and philosophy. It consumes and enlightens me.
But rarely do I take time to appreciate it. All human beings are more alike than different. At the same time, much of what I admire about my son are his qualities that are different simply because he has an extra copy of the 21st chromosome.
All human beings are more alike than different.
In honor of October’s recognition of people such as my kid, here are some sweet, serious, silly, and wonderful things I treasure about my oldest child.
• He melts into me when I hold him. It’s like his whole body molds to mine. This is a rare perk of low muscle tone, one trademark of his condition.
• He still fits in a toddler bed at age 5. Money and space saver!
• He yells “Mom” in a sassy way when he needs something from me.
• He still sometimes calls me Mama.
• Celebrating Santa and the Easter Bunny lasts a bit longer in our house.
• His small stature means he can share clothes with his little brother.
Related: When a Child Dashes Off
• His small stature means he’s not outgrowing some of the activities his younger siblings are just starting to enjoy.
• His small stature also means he can pass as a younger child, allowing him to still get discounts at festivals and movies. (But we would never, ever do that.)
• His extra wide hands intertwine with mine.
• His speech delays mean I will never take for granted when he or his siblings are talking up a storm.
• He commands the room when he speaks.
• His body is chaotic yet controlled when he runs.
To live by meaningful inclusion in all aspects of life is critical. It’s not enough to pay lip service.
• He has put me in, and pulled me out of, the most painful, vulnerable time of my life and managed to make me a better, stronger, more compassionate person in the process.
• He has introduced me to amazing, lifelong friends I would never had met without him.
• He has taught me that to live by meaningful inclusion in all aspects of life is critical. It’s not enough to pay lip service.
• Through him, I’m learning what’s worth a fight and what I need to let go. If someone is mean to him, Mama Bear is out in full force. But if I’m working with his school to get him the services he needs, you really do catch more flies with honey.
• He has taught me to be patient.
• He has taught me that every person matters.
• He has taught me to embrace his differences; to make him better without making him conform. He has shown me that disability is natural.
[lz_ndn video=29798205]
Join the Discussion
Comments are currently closed.