Our son Ezra was born missing his left knee and fibula and fingers on his left hand. Amputation and prosthetics were the path his mother and I clearly felt we should take. Now 9, Ezra has become a confident boy and a spokesperson for people with disabilities, sharing his message that “being different is okay.” He was a finalist for the 2014 Sports Illustrated Kids SportsKid of the Year and was recently on The Ellen DeGeneres Show. Following are some principles for parenting a child with physical disabilities that we learned or developed along the way.
Accept your reality as quickly as possible. Your world has changed. Life will not be what you expected. But your ultimate job as a parent is unchanged—to help your child get the absolute most out of his or her life. Only after you accept your family’s new situation will you be able to move forward and work on solutions. Remember, you are far from alone and have joined an amazing community of physically challenged children, adults, wounded warriors, and their families.
Build your story, and stick to it. Write a matter-of-fact, age-appropriate, and positive script for how you will talk about your child’s differences. Get your community of friends, family, teachers, coaches, and classmates to use the same language. Over time, by hearing these words, your child will learn the script and will have a way to explain his or her differences to others. Offer to take the lead when your child is being questioned by other kids, especially when he or she is young. We still offer to handle unsolicited questions if Ezra doesn’t have the energy to do so. This simple alignment with language will go a long way toward building a confident young person.
Cast a positive shadow, always. Model positive, optimistic behavior. Your attitude, demeanor, body language, and words are powerful signals of your feelings and expectations to your child. In my mind, there should be no limits set for our children and no negativity regarding their situation. I learned this lesson the hard way when Ezra wanted to learn how to skateboard. It seemed impossible for an above-knee amputee to skateboard. Through trial and error, Ezra proved me wrong. My lesson? Bury the doubts, think positively, and see what happens.
Deal with your big decisions with ferocity. All decisions regarding your child should not be treated equally. Most of your time and energy should go toward decisions that are hard to reverse and that could significantly impact your child. Medical treatments, surgery, and physicians must be researched thoroughly. My wife and I met more than a dozen surgeons before finding the right doctor for Ezra’s toe-to-hand transplantation surgery, a very complex and life-altering procedure. There is a simple matrix on this page to help map out decisions you are facing.
Enforce balance between mainstream and adaptive activities. When Ezra was barely a day old, one of our doctors said, “Go to Shriners for prosthetics and to be around other kids and families facing similar challenges.” We took his advice to heart and have been involved with many organizations where Ezra can be around other child amputees. Fitting in can be difficult for these children, and it is our responsibility to give them moments where being different is normal and where they can truly be themselves. However, Ezra also plays many sports with able-bodied kids.
Focus on their passions and abilities. Help your child become an expert at something—art, music, writing, sports, singing, etc. Ezra thinks of himself as an athlete, not a child with a disability. Malcolm Gladwell, in his book Outliers, makes the case that people need to spend about 10,000 hours working on a skill before they become an expert. Ezra has logged thousands of hours on the court already, and his obsession with basketball is invaluable to his sense of self and confidence.
Get involved, and advocate for your child. Referees and coaches sometimes question whether Ezra should play alongside able-bodied children. We say, “Absolutely. He’s been playing these sports as long as any of these kids and has every right to be out there with them.” Usually this is all it takes. As children get older, they will become better at advocating for themselves, especially if they have watched their parents do so in a positive, polite, but firm manner. Importantly, public schools have been issued federal guidance to provide the same athletic opportunities to children with physical challenges as they do for able-bodied children. Know the rules. Advocate.
Help expose them to the world. Expand your child’s horizons; introduce things that he or she may never have seen or thought about doing. Sports examples include kayaking, rock climbing, surfing, skateboarding, and Paralympic sports like track and field, swimming, and archery. When Ezra was 7, he started training for track and field, which we knew nothing about. As it turns out, Ezra really enjoys being out on the track and set seven national records at the National Junior Disability Championships last summer.
Clayton Frech (info@teamezra.com) is a regional vice president at Safelite AutoGlass. He is also the founder of the Angel City Games (www.angelcitygames.org), a track and field event for physically challenged children, adults, and wounded warriors to be hosted at the University of California, Los Angeles (UCLA), June 19-20; and Team Ezra, an advocacy and fundraising organization that supports various disability-related organizations (www.teamezra.com).
For more links and resources, visit www.teamezra.com/abcs.
By Clayton Frech
RESOURCES FOR DEALING WITH CHANGE:
Who Moved My Cheese? by Spencer Johnson
FOR WRITING YOUR SCRIPT:
www.teamezra.com/abcs
FOR POSITIVE LEADERSHIP:
Be the Hero by Noah Blumenthal
FOR EXPLORING K-12 PRIVATE SCHOOLS AND SCHOLARSHIPS FOR CHILDREN WITH DISABILITIES:
www.antonioglassbergfoundation.org
TO CONNECT WITH OTHER AMPUTEES:
www.shrinershospitalsforchildren.org (healthcare)
www.challengedathletes.org (financial support for adaptive athletes)
www.nolimitsfoundation.org (amputee kids camp)
FOR UNDERSTANDING HOW EXPERTISE IS DEVELOPED:
Outliers by Malcolm Gladwell
FOR U.S. DEPARTMENT OF EDUCATION CLARIFICATION OF SECTION 504:
www.teamezra.com/abcs
FOR ADAPTIVE SPORTS:
Wheelchair & Ambulatory Sports, USA at www.wasusa.org. Also, visit livingwithamplitude.com, and click on the Resources tab for a listing of many other adaptive sports programs.