Truths I Want My Special Needs Kid to Know (Part 2): We Can Shape How Our Children Interact with the World.

Chapter 1 We Can Shape How Our Children Interact with the World.

Raising Jack in a World of Johns. 

My oldest son’s name is John Henderson.  We chose the name because his grandfather is a John, he has 2 great grandfathers named John and even his aunt is a Johnette.  We clearly like the name John in my family.  But when I was pregnant and picturing this child in my mind, he just didn’t feel like a John to me until we found out that there are Johns in the world who go by Jack.  The most famous of course is Jack/ John F. Kennedy.   So on that day, my John became a Jack.  I tell you this not to bore you but because I think it is a good illustration of what it looks like to raise a special needs kid.  Let me explain. 

In a world that is full of Johns (seemingly normal kids), some of us are handed Jacks.  Jacks are different.  They are created with a unique purpose that changes not only how we view the world but also how we engage it.  They may have most of the traits of your everyday “John” but something sets them apart and makes them a Jack.  Jacks are amazing. 

I am crazy about my Jack (literally and figuratively).  He is witty, kind, purposeful, focused, and walking around this planet with more maturity than most adults I know.  Being a “Jack” has forced him to discover his strengths and how to interact with the world through them when most kids were still sword fighting in their front yard. Jack’s challenges have not only affected how he interacts with the world but they have also called into question how my husband and I interact with the world.  They have laid out on the table of negotiation much of what we considered worthwhile.  I care less about things like a kid’s performance at a sporting event (unless it is a picture of overcoming) and more about things like how a child engages in conversation with a senior adult at the church.  I care less about an invitation to the coveted birthday party and more about my kid’s desire to serve at a local outreach.   I spend less time looking to the world for affirmation and more time looking to God for purpose. 

As I raise my “Jacks” in a world of “Johns” that is run by the priorities of “Johns,” I can only succeed if I trade my lenses of personal glory and selfish ambition for lenses of purpose and kindness.   Jacks don’t generally have the luxury of engaging the world through the route of selfish ambition.  I believe that their challenges place them on another path and that path ends in a much sweeter destination with greater personal fulfillment. 

But there is a catch.  Our Jacks are standing at a crossroads between what the world says they should pursue (and are insufficient for) and what we know is the harder but more rewarding path.  Our Jacks are looking to us for guidance.  Like all children, they are sponges soaking up the examples being played out before them.  Licensed professional counselor, Jaqueline Sussman says, “Fundamental to the formation of our child’s personality development is not simply our child rearing techniques, but who we are as a person. Our own behaviors and attitudes are the primary influences that shape our children’s sense of self, whether we are aware of these or not.”  In her article, Six Ways You Influence Your Child, she goes on to say, “Children are like sponges that daily absorb their parent’s overt and subtle expressions, attitudes, mannerisms and life perspectives, and these are the elements that deeply form their identity.”

How I view my child’s special need will likely carry over into how they view it and interact with it themself.  So that leads me to the conclusion that I must determine what is the truth regarding my child and and then interact with them and the world in light of that truth.  The first step though, is discovering that truth and making sure that I am incorporating it into my own reality now - as in, today.  For example, I cannot teach my kid that they are wonderfully made if I keep referring to their condition as a curse.  They won’t see themselves as a blessing if all they hear is how much their medical bills are costing me.  Does that make sense to you?  It sure does to me.  Parents who want to influence how their child engages the world for the better may have to change how they engage it themselves. 

There are some great historical examples of such parents.  I will start with the mothers.  Wilma Rudolph was the first American woman to win three track and field gold medals at a single Olympics.  What might surprise you is that she was born prematurely at just over four pounds.  In her childhood she contracted scarlet fever and polio. It weakened her enough that she had to wear a brace on her left leg and her mother learned massage therapy to help her recover.  When speaking of her mother, Rudolph said, “My doctors told me I would never walk again. My mother told me I would.  I believed my mother.” 

Abraham Lincoln had two mothers to credit with his upbringing.  Losing his biological mother at the age of nine was just the start of his story.  It has also been reported that Abraham Lincoln suffered recurring lapses of depression and yet he went on to be one of our nations greatest leaders.  Fourteen months after the death of his mother, Lincoln’s father proposed to Sarah Bush Johnston.  Lincoln had a loving relationship with his stepmother.  It is said that she nurtured his intellectual development beyond her own personal ability.  Jeff Oppenheimer, author of That Nation Might Live, writes about Lincoln’s bond with his stepmother and says, “She recognized a boy of tremendous talent and saw the diamond when virtually everyone else around this gangly, awkward boy saw the rough.  That’s what mothers do.”

Have you ever heard of Lula Hardaway?  Lula Hardaway was born to a sharecropper and passed from home to home until she settled with a husband who abused her and forced her to work as a prostitute to feed the family.  She was also the mother of Stevie Wonder.  Lula escaped her abusive marriage and moved to Detroit where Stevie’s talents were discovered.  Her strength in overcoming continued into how she related to her blind son.  Lula Harding saw how talented Stevie was and how people gravitated to his outgoing personality.  She pursued opportunities for her son based on his strengths instead of his weaknesses but don’t be mistaken and think that she did not worry about him.  In the book Blind Faith, a conversation is recounted where she said to Stevie, “I worry because I can't always be there to watch after you. I worry that you won't be happy, because you'll always wish that you could see. And there's nothing Mama can do about it.”  How many of us can identify with this feeling for a special needs child?  I worry about how other kids will relate to my child or if they will grieve what they cannot do.  Lula Hardaway, I feel ya!  Thank you for reminding us not to let our worry keep us stuck where we are.  When Stevie won his first Grammy, he handed the statuette to his mother and said "Her strength has led us to this place."   

Lets talk about the great dads for a moment.  Meg Meeker, a pediatrician, wrote a book called, Strong Fathers, Strong Daughters (2007).  In it she says: “Fathers, more than anyone else, set the course for a daughter’s life,” and, “To become a strong, confident woman, a daughter needs her father’s attention, protection, courage, and wisdom.”  We may have started our examples with influential moms but don’t think for a second that dads aren’t influential too, especially with daughters. 

One of my favorite father/daughter examples is the relationship between Malala and her father, Ziauddin Yousafzai.  In case you aren’t familiar with this story, Malala was born in Pakistan to a community that was controlled by the Taliban under a teaching that did not believe girls should attend school.  Malala’s father encouraged his daughter’s education and her right to attend school. On Tuesday October 9, 2010, She was shot in the head while riding on her school bus.  She was not expected to survive, but she did and went on to be awarded the Nobel Peace Prize in 2014.  In his TED Talk, Malala’s father concluded with, “Don’t ask me what I did. Ask me what I did not do. I did not clip her wings, and that’s all.” 

            

Another great story is the tale of Team Hoyt. Dick Hoyt is the father of Rick Hoyt who was born with Cerebral Palsy in 1962.  Rick was diagnosed with Spastic Quadreplegia and was non-verbal.  His parents could tell from his interaction that he was intellectually capable and they advocated for Rick and had an interactive computer built for him so he could communicate with his parents.  Rick went on to attend public school and then Boston University.  His parent’s advocacy for him did not stop there.  In 1977, Rick told his father that he wanted to participate in a 5-mile benefit race for an injured Lacrosse player.  His father could have told him that was impossible, but instead he agreed to take up running so he could push Rick through race in his wheelchair. After the race, Rick told his dad, “When I’m running, it feels like I’m not handicapped.”    Rick and his father went on to compete in over 1000 events. Now that is an awesome dad who asks how can we make this happen instead of falling into the popular response that it can’t be done for this kid. 

My two daughters were born into a culture that did not value them.  They were placed in a facility so their basic needs could be met as the highest level of expectation for their lives.  By God’s grace they were adopted into a family who believes that they can achieve anything.  They are Jacks born into a world of Johns but they are amazing and I have great hopes for how their lives, and their brothers’ lives, will impact this world like Malala Yousafzai, Rick Hoyt, Abraham Lincoln, Stevie Wonder, and Wilma Rudolph, not in spite of their struggles but through them.