The ABCs of Raising a Child with Physical Disabilities, Amplitude Magazine 2015

By Clayton Frech 

Item 1:  Department of Education Clarification Memo on 504:

http://www2.ed.gov/about/offices/list/ocr/letters/colleague-201301-504.pdf 

Item 2: Popular Videos Featuring Ezra 

The Ellen DeGeneres Show (December 2014)  

Good Morning America (April 2010) 

Kids in the House (October 2014) 

 Learning to Walk (2006) 

Speaking at Skyline Elementary School in Solana Beach, CA (January 2015) 

Item 2:  Sample Script to Communicate Your Child's Differences to Your Community 

Clearly, you would want to tailor the script to your situation and properly introduce your child and explain their specific differences before launching into the script to be used with children.  Even though this script was originally geared towards fellow kindergarten parents, it is still extremely relevant many years after.  

Script for Discussing Ezra with Young Children

 

“When kids see something different, they think it’s ‘yucky,' you are probably wondering  about Ezra’s leg (and/or hand).”

“Usually when children are born they have five fingers on each hand.   And they have two legs that are the same.  Once in a long while some kids are born different. Ezra was born different.  He was born with one smaller leg.  And he was born with two fingers instead of five on his left hand. But everything else about Ezra is just like you or any other child.”

“What do have just like Ezra? Ezra has two eyes; do you have two eyes?  He has one nose; do you have one nose? Two ears; do you have two ears?  You have lots of things that are the same as Ezra, and some things that are different. What do you have that is different? Ezra has a different hand and a different leg.”

“Even though Ezra’s hand and leg look different, he has the same feelings as you do. When you say ‘Yucky’ it hurts Ezra’s feelings. It’s never okay to hurt someone’s feelings. Just like we don’t hurt people’s bodies, we don’t hurt their feelings.”

Additional things to say:

His prosthetic leg (“Helper Leg”):  “Ezra has one shorter leg.  He uses a helper leg called a prosthetic to help him walk.  His helper leg didn’t grow on his body, and therefore it can be taken on and off.”

His limb deficient hand (“Left Hand”):  “Ezra’s left hand has only two fingers.  He can do the same things you can, only he finds other ways of doing them.”

Script for children who may be frightened or worry:  Ezra was BORN this way.   Most children are born with all of their body parts like you.  It’s not going to happen to you.  You are already born just the way you are.  Isn’t it great that Ezra’s body is different, and he can still do so many amazing things (Show “Good Morning America” clip) 

Below are words and actions that we feel are either encouraging or harmful to Ezra’s well-being.  We would greatly appreciate if you would attempt to use the below guidance when talking to Ezra or discussing him with your children.

Encouraging words and actions:

·       “Helper Leg” for his prosthetic leg (This is what we called it in nursery school.  Older children and adults call it a prosthetic leg)

·       “Left Hand” for his limb deficient hand

·       “Different” for his condition. “Ezra was born different”

·       Give him the choice “How do you want to climb those stairs?”

·       Ask him IF he needs help “Do you need my help?” or “Can I help you?” (FYI: Ezra is proud of his ability to help himself)

Discouraging words and actions:  

·       Sick, ill “He’s ill, or sick.” On the contrary, Ezra is a perfectly healthy young boy.

·       Bad “A bad thing happened.” -  Clearly, we don’t believe anything “bad” happened.

·       Sorry, pity “I feel sorry for him” or “poor thing” or “Tsk, Tsk” Again, we are choosing to have a positive outlook.

·       Problem Take care not to say: “Ezra has a problem.”  Ezra doesn’t have a problem; it’s just that his “body is different.”  This is Ezra’s “condition” not his “problem.”

·       Don’t assume he needs help “Let me help you.” Instead, ask him IF he needs help

·       Don’t set limits for him “You can’t climb up the stairs.” Instead, encourage and support him in pursuit of his own limits.