Truths I Want My Special Needs Kid to Know- Part 3

Chapter 2. His Condition Does Not Define Him.   

While I was preparing for this chapter, I posted a research question onto Facebook.  I simply asked, “What defines you?”   Among adults without special needs, I received answers like, “Being a mom,” “The energy I put into the world,” and “My curious and adventurous spirit."  A friend who tragically lost her husband when she had three young children said, “I believe we are defined in life by what happens to us and how we respond to it.”   I found her response especially interesting because it reflected that what defined her was influenced by what she had experienced.   I remember growing up feeling defined at times by the fact that I did not have a mother so I understood how an event could shape how you define yourself.   Other than that one insightful response, the other responses felt pretty sterile and predictable without a real trend. 

So I took my poll to the next level and asked the same question of a group of adults with a degenerative neurological condition.  Their responses were encouraging but, like my friend who had lost her husband, also reflected what they had experienced.  For example, some of their responses were,  “Not what l look like but by what I do,” “My resilience,” “My strength,” “My sense of humor and stubbornness,” “Plowing through the obstacles and doing it with grace," and “My acceptance of what is happening to me.”   The trend in their responses encouraged me because it reflected a positive spirit of resilience.  There was one response that made me sad though and perhaps it was the most vulnerable.  One gentleman replied, “My ability to fake normalcy.”   The response that bubbled up inside of me was that I don’t want to raise a kid who has to fake a state of being in order to fit in or make others comfortable.  I so appreciated this man’s honesty but I want more than that for my child.   

My original question of how do people define themselves was now evolving more into what influences that definition.  I will be honest and say that I had a pretty narrow hypothesis on the front end.   While I hoped that some people would define themselves with some sense of purpose or calling, I expected the vast majority of people under 20 to be defined by what they were good at like basketball, school, art, etc.  I expected special needs kids to run the risk of defining themselves by what they couldn’t do.  I then expected people beyond high school age to define themselves by what role they played and how they performed at it such as exhausted college student, busy mom, successful lawyer, etc.  Can I just go ahead and say that I hypothesized flat wrong.  How we define ourselves is way more fascinating and complicated than what I expected to find.  The results from the next stage of my little survey made me want to change careers and go into legit psychosocial research. 

So after I saw the response about defining yourself by your ability to “fake it” and determined that was not what I wanted for my child, I decided to explore how teenagers from different backgrounds define themselves and look for trends for what influenced that.  I asked some friends of mine, who are teachers, to offer the prompt, “What defines you?” to their classes and then share the results with me.  

The first responses to come in were from a friend who teaches at a junior high in a Houston suburb where 94% of the students are on free and reduced lunch (a program for students who are considered to be living in poverty).   The school is 29% African American and 58% Hispanic.   She was kind enough to poll several of her classes and send me the results.  Several of the students reported identity markers that you would expect like being shy, happy, or good at a certain skill.   When I removed those and evaluated what was left, the first thing I noticed was the common theme of behavior-associated identity.  They had statements like, “I get angry easily,” “I act good and make good grades,” “I don’t think before I say something,” “I act normal so I don’t get in trouble,"  "I act nicely so no one gets mad,” and “I am a bad person who never gets anything done. I am told something and I do the opposite.”   I wondered if this was developmental because kids that age are learning what behavior is not appropriate or if it was environmental because I had been told that the kids in this school came from tough homes and tough economic conditions.  I would have to wait for my comparison groups to come in before I would know.  Several students also commented on how they are known for standing up to bullies or not being a bully.  I asked my friend about this and she said the district pushes anti-bullying heavily.  Finally, several of the students reported that what defined them was how well they played a certain video game.   I found this especially interesting because it came up several times with this group but not once with any of my other groups.   I don’t want you to think that all of the responses from that group were concerning.  The most encouraging response was “I love making people feel happy in their darkest moments” and perhaps the funniest was, “My belief in God, chicken, and ramen noodles”.   

My next friend to report her results works in a completely different environment from our Houston suburb kids. She teaches at a private Christian Classical school outside of San Antonio.   It was clear in the first few responses that the kids in this program defined themselves by a completely different standard.  Of course I had the responses like “I am good at gymnastics,” and “I make good grades,” but once I moved those aside, what was left to stand out was clearly a reflection of faith and teaching.  One response was, “Following Christ’s example of transforming people through loving them.”  That was certainly a far cry from saving the world on your PS4.  These kids also gave me, “That I believe in God and hold myself as close to him as possible,” “I try to honor Jesus by being the best form of myself,” and “My merit and my integrity.  It not the cards you are dealt but what you choose to do with them that matter.”  Perhaps the most honest response from this group was, “I should find my identity in Christ but I struggle and find it in my friends and achievement.”  Like the kids from Houston, how these kids defined themselves had clearly been influenced by their environment but in a completely different way.

The third response to come in was from the other side of the world.  A good friend of mine is a teacher at an International school in Dubai.  She teaches students from many different countries and cultures whose parents pay a lot of money for them to attend her school.  This vision for the school is reflected in a document that they call their Community of Practice.  In it they have learning principles for their students to help them maximize their learning through a common culture of independent thinking, self-awareness, risk taking, and reflection.   When the students of this school were asked what defines them, their answers were more much more intuitive.  They included responses like, “I am defined by my passion and positive attitude towards learning,” or “I am defined by my introverted personality and few close friendships," "I am defined by my creativity and interest in things others would pass over," and "I am defined by my inspirations, which can come from anything.”  I was impressed by the empowered thinking across the answers like from this student, “I am defined by my hard work to get what I want. When I really want to achieve something I'll work at it and do my best until I achieve it.”  Of course this school had answers that mirrored other schools and my expected responses of, “I am defined by my love of soccer” but my goal was to see what common themes set them apart and for this group it was their culture of higher-level intuitive thinking.  

My fourth and final response came from a group of kids who live in a small Texas town with a population of less than 20,000.  It is 75% Caucasian, 10% African American, and 15% Hispanic.  Only 10% of the city has bachelor’s degree or higher and the city ranked in the top 10 on the list of "Top 101 cities with the largest percentage of people in other types of correctional institutions (population 1,000+)."  My friend who teaches in this community reported that a large percentage of his students have at least one parent in jail due to drug-related crimes. I expected this group to look a lot like my students from the Houston suburb and while there were some similarities, there was also one difference that really stood out.  There were behavior-based responses like we saw in Houston but then there was an overarching theme of family and hope for the future.  Some examples include, “What defines me is my dad’s rough past.  It inspires me to keep going,”  “My mom gives me direction and my decisions define me,” “My future gives me direction and keeps me out of trouble,” and, “My mom and my idols give me direction. They make mistakes but that is okay because we all make mistakes.”    I am not a psychologist so I am not going to try and interpret these results except to observe that it appears someone is speaking into the lives of these kids and pointing them in a direction that it not determined by where they came from or what they have experienced.  When asked what defines them, they produce answers that suggest that positive teaching is working. 

So why are these findings significant and worth sharing here?  I believe they are significant because what they suggest should be encouragement to this parent of a special needs child who wrote, “Alex is 15 and it is hitting him hard.  He has always been a go-getter and sunshine child.  But when he hit the teens, things have changed as to how he sees himself.  Something shifted for Alex that influenced his identity and self-esteem.”  She is experiencing what I watch for in my children every day.   Their special need or life experience has the potential to affect their identity but it is not out of my ability to influence. After looking at the findings of my survey, I feel more empowered than ever with my ability to speak into what defines them.

Based on these results, there are 4 main influences to our identity: our obstacles or life experiences (that which we cannot control), our faith, our strengths, and our people.  Next I want to talk about each one of those a little more in depth and discuss how we as parents can influence them. 

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. 

Intentional Parenting: Truths I want my Special Needs Kid to Know - Post #1

 Preface to the Preface: 

Alright y’all this is a long time coming.  About 2 years ago, I sat down and made a list of things I want my special needs kid to know.  That list turned into research and that research led to chapters.  I played with the title and landed for a while on “Raising Jack in a world of Johns.”  I was pretty proud of that one because my oldest is named John but he goes by Jack and of course he is my parenting guinea pig original inspiration for my thoughts.  Then a good friend pointed out that there are other definitions for the word “John.” Well, I am definitely not writing a book about raising your kid in a world of prostitute customers, so strike that! Good idea now gone. 

Here’s the deal.  I want to encourage other parents who are raising special needs kids (or even kids who have endured loss or trauma, its own form of need) to consider certain truths as they shape the way their children process their stories and move forward.   The second part of this deal is I’m tired of procrastinating and I don’t want to wait to publish another book to share those thoughts with you.  I still don’t love the title, but I don’t want to wait to perfect that either.  If you have a better one, I am always open to suggestions. 

So here we go...  

Introduction:   Why do I get to Speak on the Topic of Raising Special Needs Kids

My goal in writing this is to encourage other parents who are on the journey of raising a special needs kid. I don’t have all of the answers, but I do have personal experience, professional experience, my faith, and access to good research as I navigate this road and share my insight.   If you are going to take this journey with me, I think it is good for you to know a little about me and how landed where I am. 

It was the late 80’s or early 90’s and I was a young teenager.   I wish I could remember the exact date, but I can’t.  What I do remember is that I was spending the week with my aunt because I was sick and my widower father had to work.   My Aunt Mary is a saint and she stepped in to play a mothering role for me after the passing of my own mother when I was nine.  I am confident that the seeds of my faith in Christ were planted in her home by her example and her teaching.  She was the first example that I saw of someone investing in another child (me) and loving them as their own. 

It is no surprise then that God placed His call on my life while I was resting in her home.  I remember clearly that I was lying in bed and watching a documentary on the orphan crisis in Romania.  I remember scenes of children sitting on the floor and splashing in their own urine.  The journalist told of how the parentless children were lined up and then scanned to determine if they would be placed in a better orphanage or in an institution to live out their days.  Those children who were clearly handicapped were separated out first to be institutionalized and then the line was scanned for anyone who had the slightest disability such as a lazy eye and then they too would join the others.   I was in tears.  In that moment, I told God that I wanted to give my life to serve children like that.  I wanted to be a part of the solution, wherever that path took me.  What I was seeing on that screen was NOT okay and even as a young kid, I knew that God was calling me to be a part of the solution.  

I spent the next several years and the first semester of my time at Baylor University on the path to being a pediatrician.  My plan was to go to medical school and then into foreign missions.  One day when I was in the thick of hating Chemistry and the talks of managed care were fueling the uncertainty of physician futures, a friend recommended physical therapy.   I have to confess that the initial hook was the realization that I could wear tennis shoes and comfortable pants to work every day.  I am just keeping it real.  My entire story is not one of heroism and faith but also has a little self-service worked in.   I shadowed some pediatric PTs and knew that God was opening the next door for the promise that I had made Him so many years before.  

Fast forward a few years that were lost in days of difficult classes and long nights in coffee houses and I was finally a licensed PT.   As a bonus, I was also now married to a man who shared my faith and was willing to embrace my passions.  I followed him to complete his schoolwork and practiced PT where the jobs were available. Don’t get me wrong; God opened some amazing doors during that time and never let me forget that when the season was right, He would open more doors to bring me back around to that promise. During those early years of marriage, Trent and I met a couple that had adopted a little girl from China.  We wondered if this was the direction that the Lord was leading us in.  When I was pregnant with my second son, Sam, I felt his tug on my heart that any future children would not come from my body but most certainly from overseas.  

When Sam was old enough for us to qualify, Trent and I completed our dossier to adopt a special needs girl from China.  We were matched with the most perfect little face that I had ever seen on a computer screen and we would go on to name her Ruthie after the verse in Ruth that says, “Where you go I will go. Where you stay I will stay.  Your people will be my people and your God my God.”  The Chinese diagnosed Ruthie with “both hands endoduction abnormality.”  Needless to say, that was Chinese for, “Something isn’t right with her hands but we have no idea what it is.”  Go ahead and Google “endoduction.”  You will get that prompt that starts with, “Did you mean: …”  With a little more research and the help of some American physicians, it appeared that she most likely had a condition called Arthrogryposis. 

Finding out your are pregnant with a child with a special need and saying yes to adopting a child with a special needs start out as two very different emotional journeys.   I say that because our story with Ruthie may not look like yours at the beginning.  I never grieved Ruthie’s condition because I never hoped for anything different.  Once Trent and I felt like we had a diagnosis, we were able to skip straight to preparation.  That said, I still understand the grief and fear that you may have experienced as a first response if your special needs child is your biological kiddo.    

While we were waiting to travel to China, my oldest son, who was four at the time, started standing up from the ground by walking his hands up his thighs or the wall.  There is a name for that (unlike endoduction) and it is called a Gower’s Sign.  It indicates muscular weakness and is most often the first sign of Muscular Dystrophy. We took him to Texas Children’s Neurology Clinic and they ran a battery of tests and came back with a diagnosis so rare that few had ever heard of it.  Those of you with biological special needs kids will appreciate this next detail. Apparently I must have been hard to reach on the day his tests came back because the Neurologist called and left me voicemail that said that he wanted to let me know that my son’s tests had come back and he was diagnosed with an extremely rare condition called Hereditary Spastic Paraplegia which means that he is going to become a paraplegic and there is no treatment.   So bio moms, I get it.  We grieved for the unknown and the change in script that had been handed to us.  We had one motion picture in our head for this child and suddenly there had been a rewrite that we did not get to vote on.  

We now faced the reality that we were bringing home a child with special needs while one of our children already at home was progressing in a special need of his own.  I believe this is the point when Trent and I really started the conversation on how we wanted to raise these kids and what we wanted them to know.  Like you, we talked about our fears of how the world would treat them and how that would affect them emotionally.  What we knew most to be true is that how they perceived themselves would be most influenced by how we perceived them and that had to be grounded in how the Lord viewed them.   We would have to fight back competing motivations like fear, anger, hurry, and even sympathy.  

In July of 2013, my passion for special needs kids overseas took me to Boaji, China to work with nannies in an orphanage there.  My initial instruction was to offer training but, in God’s perfect timing, the agency that sent me received a large group of referrals on kids from that orphanage the day we arrived.  They now needed me to evaluate those kids from a developmental standpoint so I could help advocate for their adoption when I returned.  Most of the assigned children were in the toddler room.  That is where I fell in love with the cutest dimples and sweetest smile that I had ever seen.  That entire story, along with the medical challenges that followed, are detailed in my book, Conquering Mountains.  To sum it up, 6 months after returning from that trip to China, I went back to adopt that dimple faced beauty.  We named her Maggie and strapped in for the roller coaster that came next.  

Maggie has a single ventricle and single atrium heart defect.  In plain English, that means she has half of a heart.  Three months after joining our family, Maggie had 2 massive strokes that made us long-term residents of Texas Children’s hospital (TCH).  A year after she came home from the strokes, she had a single-stage Fontan procedure and suffered multiple complications which renewed our “lease” at TCH. She is thankfully stable now with just a handful of residual complications from her strokes and heart condition.  Her life expectancy is unknown so we approach our days probably like most of the audience reading this.  We cherish our moments with her, try as much as possible to slow down and appreciate the little things, give lots of grace for her behavior in light of the neurological component, and do our best to live by the motto, “You can’t put a price on a good time.”  We adopted that phrase from my late cousin who loved life and unfortunately passed unexpectedly in his 30s.   We don’t know how many days we will get with Maggie so we try to embrace and live each one we have to the fullest.  

Finally, it turns out that while Jack is the first to be diagnosed (and at the time, the 16^thperson in the nation with his diagnosis), he is not the first member of our family with HSP.  Shortly after Jack’s diagnosis, we began recognizing the symptoms all around us. My father and my brother are both significantly affected by the condition too.  My sister and I are carriers and will display the symptoms to a lesser degree as we age.  

I share all of this because I want you to know that I approach this subject from myriad of directions.  While I started this journey as a called and compassionate believer, I have now approached it as a pediatric physical therapist, a biological parent, an adoptive parent, a daughter, a sister, and a patient.  I am some version of most of you and I would imagine that if you were sent here, you can see yourself in some part of my story.   I am not just looking at disability but it is also looking back at me at every turn. Like you, I have hopes for my child as they encounter this world with the challenges that have been placed before them.  Some of those hopes are motivated by Scripture, some are motivated by experience, and some are motivated by research.   My plan is to outline that for you and give you some tangible framework for thought and application. 

I see the world in layers and I tend to relate to it by digging deeper for greater understanding.  In this book, I am hoping to flatten those layers and bring the foundation to the surface so we don’t just consider what we currently see but relate to the entire picture.  If you are a photography junkie (like I am), you are appreciating my Photoshop illustration. 😀

So let’s get started…