Truths I Want My Special Needs (Well Any) Kid to Know- Part 6- Still on Faith...

Chapter 5-  Still on Faith-  

Facilitating a space for my children to grow in their faith.

In order for my children to make their identity in Christ something they are not a stranger to I have to give them the opportunities to study it and then the space to wrestle with it.  After all, it is NOT a three-way relationship that I am facilitating.  God does not need me to be a chaperone in His dance with my child or be a caddy keeping score in their round of golf.   If my kid hits his ball in the sand trap or needs a mulligan in life, the best thing I can do is let him work that out with God, the caddy.  This illustration is starting to get out of control in my head but I think it is fair to say that Christ created the course and paid the ultimate price for the round.  My goal is to give my son his own set of clubs, drive him to course, and then come around every so often with a bottle of water and club sandwich to help him keep going.  I am going to leave the course navigation to God. 

So how do I facilitate a space for my children to explore and wrestle with their faith?  I have a short list (non-exhaustive by any means) for you as to how that looks in our home.  You may want to read these slowly and give yourself time to do a little self-check before moving on. 

    1. We try to avoid resentment by monitoring our expectations. 

Just because he is the pastor’s kid does not mean he has to be at the church every time the door opens.  He was not hired for that position, his dad was.  He should be allowed to experience the church like any other kid in the building.  I try to find the balance in encouraging him to attend things that I believe he will find worth his time while avoiding the temptation to schedule his relationship with Christ.   

2.  We allow their Christian experience to be fun.  

We attend Pine Cove Christian Camp because, first, it helps us to keep our focus on things that matter and, second, because we want our kids to see that being Christian is both fun and cool.  We look for ways to connect our kids to the fun that comes with following Christ.   I don’t know about you but I grew up in a church that was incredibly boring.  It wasn’t until I was exposed to a youth group at another church that I discovered that following Jesus was really fun and that Christians were fun people.  I don’t want my kids to be 16 years old before they make that same discovery.   Being a Christian is heavy stuff and following Jesus is serious business, but it doesn’t have to heavy and serious all the time.  Joy is a real thing and laughter is a gift.

3.  We find a place for them to serve in the church as teenagers.  

Don’t let the church just be a place that serves them until adulthood.  We need to encourage our kids to find their roles.  When you think about that, be sure and make it unique to them.  In serving, they experience the functional side of the church and get to see God move through them to impact the Kingdom.   Also don’t be afraid to look into areas that might have previously been reserved only for adults.  There was a great book out 15+ years ago called Do Hard Things.  It looked at how we don’t expect enough out of teenagers or push them hard enough.  I tend to agree.  

4.  We expose them to other denominations without fear.  

Personally, I started out as Catholic, found Jesus in a Pentecostal church, and landed as a Baptist but I am probably more non-denominational at heart.   The freedom my dad gave me to explore my faith only made it more personal for me.  Go ahead and let them wrestle with their honest questions.  Then, don’t answer them with what someone told you was true or what you read on the internet.  Find solid truth and train them to do the same.   It is part of the dance (or golf round).  When my husband was on Sabbatical in 2019, we took our children to a Church of Christ and then two very different non-denomination churches because we wanted them to see how other people worship. 

5.  We teach them about God as Redeemer AND Restorer.  

As Christians, we love to see God redeem a situation.  Heck, most of us grew up knowing that God so loved the world that he gave His only Son (John 3.16) and that He also works all things for the good of those who love Him (Rom. 8.28).  He redeemed our lives and He redeems our circumstances.   Experiencing God as redeemer can be like watching your favorite team come from behind to win the game that others thought was surely lost. Redemption is exciting and beautiful but it is not everything.   Christ doesn’t just move to rewrite our stories.  He desires to engage us personally and that is where Restoration happens.  I don’t want them to become so focused watching the redemptive Jesus that they miss the loving hand of a restorative Jesus.  Redemption rights our circumstance.  Restoration heals our heart. 

6. We teach them how to apply the principles of the Bible for everyday life, remembering that there are way more promises than warnings.  

I think Christian parents run the risk of only teaching the Bible as a historical document or a rules book.   As a child, my Christian upbringing focused on reverence toward a great historical document.   I memorized the Ten Commandments and a handful of prayers.  I even kissed a stone cold cross with the baby Jesus on it as part of my bedtime routine when staying at my grandmother’s house.  But I never used my own words to talk to God.   Fast-forward to 2019 and I fear that the God my children run the risk of seeing in the broader Christian picture today is the one who says:  “Don’t vape, don’t cuss, don’t be gay, and publicly profess the tenants of our conservative politics.”   There may be some everyday life in there, but it is not promises over warnings.  

One of my favorite lessons on relating to God came from the book Exodus in the story of Moses.  In Exodus 33:13 Moses asks God to teach him His ways so that Moses may know God and find favor with him.   I want my special needs child (well, any child) to know God’s ways and not just his rules.   Then in Exodus 33:15, Moses takes it a step farther and tells God that if He does not go with them, then don’t send them from there.  YES! I don’t want my kid to just know who God is but I also want him to desire the presence of God everywhere he goes.  Finally, in Exodus 33:18 Moses really gets it.  He says to God, “Now show me your glory.”  Some of us may be tempted to bypass that third statement because it sounds kind of confusing.  Like, what in the world is God’s glory such that He could show it to me?  Is it the sunrise?  I like sunrises.  One of the smartest pastors of our time, John Piper, defines God’s Glory as “the radiance of his holiness, the radiance of his manifold, infinitely worthy and valuable perfections.”  That’s still pretty packed I think.  I once heard God’s glory defined as the fullness of all of his attributes on display.  When I pray for God to show me His Glory, I usually follow it up with,  “Show me where you are moving today.  Let me see you at work and join you in your purposes.”  So to wrap this point up, I want my kids (special needs or not) to know God, walk with him, and see him at work around them.  More than history.  More than rules even though “not vaping” is still a good one to follow. 😀

7. We provide opportunities to expand their worldview and allow them to serve outside of their comfort zone.   
Our youth minister does a great job at this by taking our kids to work in urban  missions in a neighboring city. Another great way to do this is to become a respite home for foster care.   As part of our family vacation, we drove through the hills of Costa Rica and allowed our kids to see how families live there without running water or the convenience of automobiles.  We tell those stories and let them see it first hand.   You don’t have to travel far though.  One of the most impactful experiences for my kids was serving our community after Hurricane Harvey.   Be intentional and find their place.  They will see the Gospel there.  

8. We teach them what the Bible says about them.  
This point was inspired by a really cool video that was sent to me.  The video was of a special needs adult named Krista Hornig.  Krista was born with a genetic condition called Apert Syndrome that causes premature fusion of the skull bones causing facial abnormalities and other complications.  Krista wrote a book called, Just the Way I Am: God’s Design for Disability that I keep in the center of a table in my living room for my kids to pick up at any time.  In the YouTube video and the book, she tells of God’s grace and faithfulness in her life.  In the video she says, “Disability says ugly things to me.  It tells me I’m alone.  I’m different.  I’m worthless and weak.  It tells me my life is hopeless.  Disability lies to me and sometimes it’s easy to listen and believe.”  She then goes on to list the scriptural truths that God tells her.  She has an impressive list that includes examples like:
God tells me He has a special plan for my life
God tells me that He Created me and I am good
God tells me He has called me for His purpose
God tells me he is making me more like him
God tells me that he gave His son for my sins
God tells me that Jesus was crushed for iniquities on my behalf

At the end of the day (or the season of life called parenting) our goal would be to raise a child who filters the messages of the world through the truth of the Bible. Krista’s material is a great
tool to help your children process that. 

9. We combat cultural self-proclamation and self-reliance. 
We live in a culture that praises the self-sufficient.  The model we see in the Bible is quite  different.  In Exodus 4, Moses is telling God all of the reasons that he is insufficient for the task of leading the Jews out of Egypt.  What is important to see is that God does NOT tell Moses  “You’ve got this buddy.  You are a winner.  Everybody will love you.”  Nope.  Instead He said,  “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?”  God did not remind Moses of who Moses was.  God
reminded Moses of who God is.   I want my kid, special needs or not, to find their strength in who God is instead of some pumped up image of who they are or some deflated image they see because of their special need.   

Wow that was A LOT on the topic of faith as it relates to our child’s identity.  When I go to a course or read something where I feel like I have been hit over the head with 100 ideas, I choose one to move forward on.  When I feel like I have conquered that, however long that takes, then I pick another thing.  If you try to implement it all, it will be too overwhelming so just scan the list again and discern where God wants to move in your kid’s relationship with Him right now, and then take the steps to put that into motion and then sit back watch the greatest golf round you have ever seen as God coaches your kid through each hole.

Truths I Want My Special Needs (Well Any) Kid to Know- Part 5- Faith

CHAPTER 4: The 2^nd Identity Marker-  Faith

(photos from Ruthie's baptism in September because that was a pretty cool faith in action day for our family)

The next key marker from my survey on where kids find their identity is faith.  This influence was seen scattered throughout the groups but was overwhelmingly evident in the kids who attended a private Christian school.  While this may be my second chapter on identity markers, it is no way second in importance.  As a Christian, my greatest hope for my children is that they would find their identity in Christ first and then filter all of the other contributors through that reality.   

I have been thinking on this piece for months now as I personally evaluate how I am doing at applying these principles to my own parenting.  Our family is actively involved in the ministry of Pine Cove Christian Camps and we attend their family camp every summer.   One of our favorite things about Pine Cove is that they employee faith-filled college students as their counselors.  I had an interesting conversation with one of those students while sitting poolside at camp a few years ago.  She was telling me her story of her family leaving the church after her parents divorced and how she came back to the church on her own as a 17-year old.  I asked her what internally brought about the desire to own her faith, to make it hers, at that stage of life.  Her answer was as powerful as her testimony.  She said, “I realized that I was a stranger to the identity I had been portraying.”   Let me just write that one more time so it can possibly land on you like it landed on me.  This student, as a teenager, returned to the church on her own because she realized that she was a stranger to the Christian identity she had been taught to portray.  She claimed to be a Christian but she had no idea what that really meant. 

I would be willing to bet that her statement is true not only for a large percentage of other teens but probably a lot of adults as well.  How many people do we know who are strangers to the identity that they portray?  Unfortunately, helping our children authentically find their identity in Christ is not as simple as sending them to Sunday school or private Christian school.  The kids at the private school that I polled had all of the right language but what we have seen in the church is that the language of faith and identity can be learned but never truly personalized.  Like any other culture, speaking the language does not make us that nationality.   My son is learning Chinese and can speak it quite well but he is still the whitest kid in his class and a stranger to what it means to be Asian.   I am okay with that in his Chinese class, but I want something far more transformative for his identity as a Christian. 

 Did you know that 70% of kids drop out of church when they go off to college?  One might argue (and they have) that those kids did not truly personalize their faith but instead identified more with the activities surrounding it.  When the events and friend groups were no longer present, neither was their faith.  A 2017 study of Protestant churchgoers found that the single greatest predictor of if your child will stay in the church to adulthood is if they regularly read the Bible while growing up.  I believe we could take this information and apply it two different ways.  A potentially less rewarding way would be to require our children to read the Bible daily so that they would end up like the kids in this study – a cause and effect response.   A better, and I believe more fruitful way, to apply this finding is to see Bible reading not necessarily as much as a prescription for change but more as an indicator of authentic transformation that has already occurred and led to a genuine desire for spiritual growth.    So getting back to our kids, if I want to raise a Jack in a world of Johns, a kid who doesn’t walk away from his faith when he no longer has a weekly activity to practice it with, I have to have my own identity firmly rooted in a transformative relationship with Christ, instead of a performance-based relationship.  It is the only way I will be qualified to  help him do the same.   I can’t be on the bandwagon of those who claim Christianity but actually are a stranger to it.  That’s a lot to unpack but we have to start there because we cannot teach what we have not experienced.  I love lists so I made a short one for you on living a transformed life. 

5 CHARACTERISTICS OF PEOPLE WHO LIVE OUT TRANSFORMED LIVES:

1.  RELATING TO OTHERS:  They are more grace-filled then performance-measured when relating to others.   They are more concerned about their children’s growth than their children’s performance.  They will not be angry when their child messes up and embarrasses them but instead thank God for the teaching opportunity that they have been given while their child is still under their roof.  I have a good friend whose son said something insensitive to a girl at his school.  The school responded rather aggressively and took action against him that kept him from receiving some honors that he otherwise would have been eligible for.  His mother was momentarily embarrassed but then quickly changed her view to the one I am referencing here.  She settled with great relief that he made that mistake as a teenager at school and under her roof instead of as an adult in the workplace.  It was not her kid’s job to make her look good with a spotless high school performance.  It was her job to grant him grace as she helped him navigate the rough waters of high school and learn the lessons that he needed in order to be more successful in later in life.   She modeled this so well for me that I will never forget it. 

I believe this concept of grace-filled v. performance-driven living is even more complicated for our children to walk out personally because of the messages that they encounter through social media.  They exist in a day where value gets measured in number of likes, follows, and virtual friends.  In order to achieve those, our children feel as though they have to portray a digital reality that is based more on perfection than authenticity.  When they stop writing their own script long enough to relate to someone else’s, it is near impossible to walk in biblical principles like grace and mercy.  It is our charge as their parents to help our children learn to see beyond the stories that people tell on social media and into the reality of their messed up lives.   This way our children can stand among the few who will be equipped to meet people where they truly are.  People who live transformed lives relate to people through authenticity and grace. 

2.     RELATING TO GOD:  Kids who are on the path to not being a stranger to the faith identity that they portray genuinely desire to have a personal relationship with God.   I remember the day when Jesus went from being a historical figure we paid homage to every Sunday to a person that I wanted to know.  My ninth grade Algebra teacher told me, “Our parents and our friends are only with us for a season but Jesus is the only one who will never leave you.”   It clicked for me in that moment.  I wanted to know that Guy who knew everything about me and would never leave.   I am not suggesting that we all sit down and try to craft the right sentence to reach that place in our child’s heart that convinces them to pursue God personally.  That’s not our job.  Our job is to model that relationship for them and help them understand that Jesus is not just a historical figure worth studying but personal being worth knowing.  

3.     RELATING TO THEMSELVES:  People who have a healthy identity in Christ, are self-aware enough to know their limitations and the priority of restful peace with God over exhausted service for him.  It’s the story from Luke 10 where Martha is slaving away to serve Jesus and Mary just wants to sit at his feet.   Service is good and needs to be done but knowing Jesus is better.  We need to help our kids appreciate that balance by modeling it for them.   Can I confess for a moment that this is where I struggle the most.   I’m not any more of a master at these than you are.  It’s a journey but one worth pursuing. 

4.     RELATING TO THEIR RESOURCES:  Perhaps the greatest test of if we are truly linked to the identity we portray is if we are willing to commit our resources to it.   People who find their identity in Christ prayerfully and sacrificially give of their resources to ministry because they truly see God as their provider.   We are training our children to hold their stuff with an open hand.  I don’t know about you, but I tend to find that generous adults raise generous kids and entitled adults raise entitled kids.  In my house, we have a saying:  “We are entitled to nothing.”  I think we need to raise our kids to be both generous and intentional.  Generosity flows from the heart and intentionality flows from good stewardship.   We do a lot of shopping from ministry fundraisers and fair-trade organizations.  It’s generous but even more, its intentional.   Intentionality is not just dropping $ toward the next envelope but determining which opportunities would yield the greatest benefit to the kingdom.   Several years ago, Trent and I started a giving fund (an idea we stole from another friend) that we could allocate from when we saw places were support was needed.  We then involve our kids in that opportunity and explain how we decide what to participate in and what not to.  I want to raise my kids to be both generous and intentional in their generosity.   

5.     RELATING TO ETERNITY:  People who have their identity in Christ and are not strangers to that identity and they live for an eternal impact over momentary satisfaction.  They truly get it – life on earth is not about life on earth.  Eternity begins for us the moment we decide to follow Jesus.   I want my kids to walk in light of eternity today and the reflection of that to be seen in how they sacrifice momentary security and comfort for eternal impact.  I want them to see their struggles as just a speck of time in light of the expanse of eternity.  I want them to desire to finish well and hear, “Well done my good and faithful servant.”

So to wrap this up, our children are growing up in an age where they are being taught how to superficially portray their identity through the help of organized religion and social media.  Our goal is to parent in a way that our kids see genuine faith in action, are equipped to understand it, and are challenged to live up to it.  Then maybe, they won’t find themselves a stranger to the identity that they portray. 

Truths I Want My Special Needs Kid to Know- Part 4

Taking Hold of That Which We Cannot Control.

I call the first identity marker or identity-shaping category, “that which we cannot control,” because our disabilities or life experiences are truly completely out of our hands and we have no power to go back and change them or rewrite that part of our story.    As a parent of a special needs child, I often wonder what I could have done differently to change the outcome for my child.   Before I knew Jack’s condition was genetic, I wondered if it was because I worried too much in my first trimester or was it because I painted my husbands office while I was pregnant.   When my youngest suffered 2 strokes that were caused by a strep infection, I would have given anything to go back in time and not have placed her in the YMCA childcare class where she most likely caught strep.  I couldn’t (and still can’t) wrap my brain around what that one workout class cost that child, but we can’t quarantine ourselves in our homes to protect ourselves from the unknown and we certainly can’t turn back time and keep “that which we cannot control” from ever happening.  

What we can do (and help our kids do) is take that life experience or circumstance and look at it through a different lens.  Instead of finding our identity in the existence of that circumstance, we can be defined by how we receive, interpret, and respond to it.  You can probably see by now that my favorite stories are of those people who allow “that which they cannot control” to push them to a greater purpose. 

When Steven Curtis Chapman lost his 5-year old daughter in a tragic accident, he and his family were understandably devastated.  I have never lost a child and so I am completely unqualified to even try to put into words the pain they must have felt.  Instead, I want to focus on what they did next because it was pretty incredible. In the midst of their grief, they opened an orphanage in China that has now served over 2000 special needs children while offering them quality medical care.  Maria’s Big House of Hope has also seen over 150 children placed into forever homes.  In the description on their website, it says, “That big blue house in Luoyang is proof of God’s redemption and of his ability to bring beauty from the ashes.”

Oh my goodness I could tell 100 stories like those but this is not about other people’s stories.  It is about helping your child, take their own circumstance, and write their own story.   So what are some practical ways to help them do that?   I have 4 categories to help us navigate those waters. 

1. Personal Strengths – We need to look for places where they can shine either through their challenge or in spite of it. 

My daughter Ruthie, who has arthrogryposis of her arms and hands, spent the first 2 ½ years of her life in an orphanage doing everything with her feet.   Her feet were basically her hands and so what was meant to limit her actually gave her crazy foot skills.  So when she was 4, we enrolled her in soccer.  From the first game, Ruthie was that kid kicking the ball down the field while everyone else was picking flowers.  Today, I love watching her in a one-on-one scenario where she gets to move the ball with her feet in ways that others might only be able to do with their hands.  She loves soccer and it has given me the opportunity to point out to her that arthrogryposis just might have helped her in soccer as much as someone would have expected it to limit her.  

In the spring of 2016, I attended a conference for parents of children with Hereditary Spastic Paraplegia.  One of the speakers at the conference was Rebecca Hart, a Paralympic athlete with HSP.  Rebecca is an equestrian.  She reports that horses allowed her to turn her anger into passion.  She says that, “Horses were her equalizer.”  Rebecca found her passion through her condition and then found success in spite of it.   I don’t know Rebecca’s parents, but I rejoice with them in my heart because I know the joy they must feel to see their special needs daughter, whose trajectory was at one point concerning, to now be living her passion. 

We will talk more about discovering your child’s individual strengths in another chapter.  Here I hope to open your eyes to the possibility that your child’s experience or special need may set them up for success in an area that you never anticipated and it is worth your time and energy to explore that. 

2. Positive Action – It is an awesome moment when you can help your child to see the world apart from their personal struggle and then step outside of their pain to serve someone else in theirs.   

A friend of mine went through a divorce just a few months before Hurricane Harvey hit our city.  She had just moved her children out of their family home and into a much smaller rental to settle into their new reality when the floodwaters came.  Here is her testimony from those days and her parenting win:  “When we flooded in Harvey, I made sure that the kids thanked each person who helped us, donated stuff, etc. so they could see where their new ‘stuff’ came from.  We also have been going to a homeless shelter once a month for the last several years to throw birthday parties for homeless kids, so after Harvey when we went and they realized that the kids there lived like we had after Harvey, but they did it EVERY day; it had a huge impact on their frame of mind.  They all were much more appreciative of the kids circumstances then than they had ever been before.  It was very eye-opening, and has stuck with them.  Now when we go each month they insist on taking toys, books, clothes, etc. to the kids there so they can be blessed like we were.”  Her kids came out of a terrible year of tragedy heaped upon disappointment with a lesson on gratitude and perspective.   I think it is important to note that she was taking her children to the homeless shelter before her divorce and Hurricane Harvey.  She made an intentional effort of instilling a heart of service and gratitude into her children before it became critically necessary.  

Service for your child may initially look and feel to them like forced labor.   That is perfectly okay.  They can’t feel compassion for what they have not seen or experienced.  Your goal, however, is for them to transition (like my friends whose house flooded in Harvey) from kids who participate out of duty or personal entertainment to kids who participate out of compassion and a deeply rooted desire to serve. 

One final note, when looking for a place for your child to serve, consider your child’s passions, giftings, and own life experience.   Signing my 17-year old up to serve in an inner city football league would be a total failure.  The kid hates sports.  However, he found his passion through serving in a different inner-city ministry.   Seeing how God was shaping his heart for service, I recently pulled him out of school to take him to China for a week to work with special needs orphans there.   Most adults would not have been as useful and servant-hearted on that trip as he was.   If you guys grabbed coffee next week, I am fairly certain that he would tell you that his opportunities to give back have not only shaped how he views his own struggles but have been the vehicle through which God has captured his heart for service after he finishes high school.   

3. Ongoing Purpose – The third suggestion for helping your child have a healthy perspective of their own circumstance is to enable them see that they have an ongoing purpose even in midst of their suffering.

I have a friend who lost her husband to cancer 10+ years ago.  Her daughter was in elementary school at the time and wrote this regarding her experience:  “Even though my brother and I lost my dad at a young age, our mom never let us use that as an excuse.  She would continually push us to give 110% in everything we did because that’s how our father raised us.  We weren’t allowed to become bratty-kids (although I definitely had my moments/phases) because she would always remind us that she and dad had raised us better than that.  Basically, she did a really phenomenal job of instilling in us the fact that just because Dad was gone doesn’t mean everything he ever taught us was gone with him, and that we should always try to honor his memory and make him proud. I feel like this really pushed me to get to where I am today, and I know I’m not done with school and in the real world yet, but I’m almost there.”  My friend did an awesome job at teaching her children that the hope and purpose for their lives was bigger than their loss.

This is where we teach our children that God created them for a purpose and that He was not taken off guard or surprised when they came against this challenge they now face.  Instead, God is likely using this experience to help shape them into the person they need to be so they can better walk in their created purpose.   

4. Lasting Perspective – Finally when it comes to helping our children have a right relationship with their circumstance, we need to give them lasting perspective.  When Corrie Ten Boom, who wrote The Hiding Place, was placed in the back room of a Nazi prison camp that was so infested with fleas that the guards would not even enter, she started a Bible study.  That flea-infested location, which felt like torture placed upon torture, turned out to be the safest place to teach others about Jesus because the guards wanted nothing to do with it.   When she realized the blessing of her location instead of the curse of it, she was granted perspective. 

This next idea is so important to me that it was originally slated to be it’s own chapter.  One way we can give our children lasting perspective is to help them see that everyone has something that they are dealing with.  My brother has a great statement that really brought this home for me.  He says, “If we all took our ‘something’ and threw it into a pile to be redistributed randomly, we would jump into that pile and fight like hell to get our own ‘something’ back.”  I think it’s true but we can’t appreciate that until we stop looking at our own circumstance long enough to appreciate the significance of someone else’s.  When we truly appreciate another’s struggle, our own becomes less burdensome and we are suddenly not alone.   

One day, while driving in the car, Jack and I had the pile redistributing conversation.  I would have him name someone who he thought had no issues and then I trusted him with the insight of what they were actually battling.  Boy A, who seems to have it all together, he is dyslexic and struggles every day to get through school.  Boy B, who was mean to you in class, has a parent battling cancer.  Boy C, who you see playing outside physically uninhibited, his parents are going through a divorce and his father is moving out.   Everybody has something and the sooner we can help our kids appreciate that, the sooner they can move from a state of feeling cheated by life to feeling compassion for others who are also struggling through it. 

 This last example is raw but honest.  I only share it because there are some of you who I am confident want to shoot me the middle finger when I suggest something like perspective in your unimaginable circumstance.  I get it. Maybe I even deserve it.  When my mom died, the wife of her first cousin stepped in to play a significant role in my life.  I affectionately called her “Aunt Mary” even though she really wasn’t my aunt at all.   You might remember that I mentioned her in the introduction.  She is significant here because she invited me to church, bought me a Bible, and told me about Jesus in a personal way that my previous church upbringing full of rituals had not.  My life was shaped by my Aunt Mary’s influence and I have my faith because of her investment in me after the loss of my mother.  If my mother had not passed away, the God fearing wife of her first cousin would not have stepped in and introduced me to the Author of my faith.  I miss my mother dearly and not a day goes by when I don’t wish that she were in my life and the life of my children.  I also have the raw and eternal perspective that her passing put into motion a chain of events that led me to Jesus.   Perspective is both hard and beautiful sometimes.

So to wrap up this chapter and attempt to pull it all together, let’s travel back for a moment to where we started.   Our children have the potential to find their identity in “that which they cannot control” like a disability, divorce, death of parent, or another life-changing event that they did not get a vote on.  What we can conclude from those who have walked this road ahead of us is that we as parents have the ability to speak into how they interpret and incorporate those realities into their story.   A few of the tools at our disposal include the opportunity to focus on their personal strengths, help them take practical steps toward service and positive action, enable them to see their ongoing purpose, and give them the gift of lasting perspective. 

Thanks to those of you who are following along as I post these chapters.  My sincere prayer is that you feel both encouraged and equipped. 

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.