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I recently read a thought-provoking article that provided wonderful "food for thought" that I felt was very worthy of sharing.  The article was titled "My daughter's disabled.  Please don't look away from her" written by Esprit's dad, Daniel T. Willingham.

Esprit has Trisomy-18; a rare chromosomal disorder that leaves children with profound physical and mental disabilities, and dramatically decreases a child's life expectancy.  Ninety percent of children who have this disorder don't live to see their first birthday.  Esprit is almost 15!

Written from his own unique perspective, her Dad shares a lot of thoughts and wisdom when it comes to typical reactions often invoked when children (and others) see Esprit in her wheelchair with very noticable braces on her legs and midsection, and facial features that make her stand out from other children in a crowd.  Reactions from others range from blatant gaping, not-so-discreet stares, and embarrassed parents trying to distract or prevent their kids from looking too long, making insensitive comments, or from blurting out uncensored questions like curious kids so often do.

Esprit's dad is actually fine with these things and encourages children to stare – but to smile or wave while doing so.  His belief is "staring isn't staring if you're smiling or waving or if you say Hi!"  According to her dad, trying to stop kids from staring at Esprit may mistakenly mislead kids to think there's something dreadful or forbidden about her.  Her parents welcome those awkward questions about their daughter; viewing them as an opportunity to introduce their daughter.  Dad offered some thoughtful advice to adults who sympathetically acknowledge issues that result from Esprit's disability:  It's fine to do so, but please don't overdo it so it sounds tragic... Avoid saying things like "I don't know how you do it."  He recommends focusing more on general comments if you're not quite sure what to say (but also know that sometimes it may be best to just smile or wave, and not say anything at all – listen to what your heart is telling you).  Parents of kids who have special needs are used to accommodating their child's disabilities and are happy just to have their child around.  This wise dad suggested not making a big deal out of simple "annoyances" that, in his mind, are "just the background noise of life."

In this OT's eyes, there can never be enough kindness, compassion, and sensitivity in the world, especially when it comes to special needs and celebrating every child's unique gifts.  As Mahatma Gandhi so eloquently said "... be the change you want to see in the world.."  Teach your children and students about unconditional love, empathy, compassion, and celebrating differences by example through little acts of kindness and acceptance.  Show them it's okay to smile, wave, and to go up and say hello to children like Esprit by doing so yourself.  Talk to children about everyone having different needs:  some of us need glasses to help us see, some of us need to use crutches to walk, and some of us need wheelchairs to be able to get around...

Like most children, kids like Esprit want to socialize even if they can't participate as fully or in the exact same ways as other kids.  Consider inviting and including a differently-abled child for a playdate or to a birthday party – or help create a peer-to-peer buddy program at your school.  These precious children have an unexpected way of teaching others invaluable lessons about acceptance, kindness, and unconditional love. 

Gandhi believed if you change how you think, then you will change how you feel and the actions you take.  Isolation and loneliness too often go hand-in-hand with children who have unique needs.  Let's all do our small part to help start a movement to change that.

Read the complete article here:  http://www.latimes.com/opinion/op-ed/la-oe-willingham-how-to-interact-with-a-disabled-child-20180322-story.html

– Therapy Shoppe® OT Mom, April 8, 2018 

 

References: 

Edberg, Henrik (2008, May 8).  "Gandhi's Top 10 Fundamentals for Changing the World."  Article retrieved from The Positivity Blog:  https://www.positivityblog.com/gandhis-top-10-fundamentals-for-changing-the-world/

Willingham, Daniel T. (2018, March 22).  "My Daughter's Disabled. Please don't look away from her." Article retrieved from an online copy of the Los Angeles Times.

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