Walking with Devan: An Unexpected Journey

As we hopefully come to the end of one of the most difficult couple of months that we've ever had with Devan, I find myself exhausted, bewildered and struggling to make sense of it all.  I beg God for answers and bury my head in my hands as the answer is the same as it's always been.  KEEP GOING FORWARD. 

When I come to these points in our journey, I regularly revisit a poem that we came across shortly after Devan's diagnosis of autism.  Yes, our journey looks different than many, but it doesn't mean it's not beautiful, exciting and exactly how God planned it to be.  KEEP GOING FORWARD we will and slowly unwrap the magnificent gift that God blessed us with almost 8 years ago.

The poem is called WELCOME TO HOLLAND.  I hope you enjoy it.

Welcome to Holland

by
Emily Perl Kingsley.

 

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Progress Not Perfection: The Destructive Nature of Perfectionism

I know that it may not seem like it, as my weaknesses can be glaringly obvious most of the time, but perfectionism is woven through every thread of my life and can become a destructive force if I'm not careful.

After trying unsuccessfully many times to perfectly follow a diet and exercise plan, I finally accepted my imperfections going in and walked through the challenges to reach my goal of 30 pounds of weight loss in 12 Weeks.  So, once I gave up perfection, I had success.  It seems counter-intuitive but it really works that way.

The Problem

Deep down, I expect myself to be perfect in every area of  my life.  I expect to be the perfect husband, the perfect son, the perfect brother, the perfect father, the perfect supervisor and the perfect employee.  With these perfectionistic aspirations, I refuse to accept myself when I make mistakes and beat myself up continuously when I do make them.  I develop completely unrealistic expectations of myself and wallow in frustration as I can't reach my own expectations.  I become paralyzed in my frustrations and fears of not measuring up.  The ironic thing is, as my frustration increases, my expectations become even greater, and my actual growth and success stops or goes backwards.

I see this perfection glowing in other people's lives and see how it negatively affects them as well.  We all have a gap between who we really are and who we want to be.  As realistic expectations border on unrealistic expectations and our aspirations become perfectionistic, we actually achieve less and this gap between who we are and who we want to be become widens.

The Solution

When we expect perfection from ourselves, we are really playing God.  We are saying that his GRACE is not enough to make up for our weaknesses.  We refuse to accept that we are human and humans make mistakes.  I think there's an underlying pride in many, if not all of us that says we can and should be perfect.

Slowly, but surely, I'm finally accepting that I'm not perfect, but PERFECTLY HUMAN.  Perfectly Human means that I will make mistakes, but can learn and grow from them along the journey.  God's Grace, through Jesus, is enough to make up for my mistakes and through Jesus, I have the right to be wrong sometimes.  Wow, doesn't that take off the pressure a little bit. 

Facing any challenge with this attitude, accepting challenges and mistakes along the way as part of being human, will allow you to face the challenge with calmness, confidence and strength.

What About You?

Does expecting perfection prevent growth and progress in your life sometimes?

Through Devan's Eyes - Part 1

In raising a child with autism,  one of our main goals is to teach Devan how to interact with other people.  We work on this all of the time.  Another goal, that is often overlooked, is to teach other people how to interact with Devan.  Although it's often overlooked, it may be just as important as the first one.

This morning in Church, we had the privilege of sharing a little bit about Devan in hopes that it would help people better understand how to interact with him.  I decided to post it here on my blog so that others who associate with Devan could learn as well if they would like to.  The following was adapted from 10 Things Every Child with Autism Wishes You Knew by Ellen Notbohm.  Since it is long, I decided to break it into three pieces.  So here is Part 1:


                                            




                                                 THROUGH DEVAN'S EYES

 

1.  I am first and foremost a little boy.  I have autism but I am not defined by Autism

*My birth was the same as any other.  I was born on March 16^th of 2013 in Omaha.  My mom had a C-Section and I arrived about 3 weeks early.

*I was a normally developing little boy up to about 18 months.  I began to use small words, began interacting with others, and began smiling and giggling.  At 18 Months, my brain changed and everything changed.  My mom and dad had a lot going on at that time so they have trouble remembering how it all happened, but one night my fever spiked up to about 104 degrees and my body became limp. 

*Since then, I’ve never been the same.  I completely lost all of my limited vocabulary, I quit looking at people in the eyes and becam. fascinated with letters, shapes and patterns. I quit acknowledging when people called my name and wouldn’t respond if somebody was talking to me.

*Since that time, I have made leeps and bounds in my recovery.  I love to tease my sister, tickle my little brother, and to wrestle with my dad.  I am very ornery sometimes and love to push my mom’s buttons. 

*Every weekday, I grab my bag, ipad and lunch and run to the school van.  I love school. I love my friends there, my teachers and my routine. 

* I was a little later than most kids, but at the age of 6, I learned how to go potty in the toilet and began to wear big boy underwear.  Frankly, if it was up to me, I would  run around in only big boy underwear all of the time.

*My interests change but I always have one main interest at a time that I spend most of my free time on.

*I used to be scared when mom and dad left me with Grandma and Grandpa Stutzman and Grandma and Grandpa Velder, but now I’m not scared at all.  I love to go visit my grandparents.  I actually let out a holler when we go near their houses and don’t stop.

*Although, it used to be hard for me to look at people in the eyes, it’s really not a problem anymore.  I love to look in people’s eyes and giggle with them.

*I used to like to spend most of my time in a separate room from everybody else, but now I like to be where the action is.  Every once in a while, when I became overwhelmed, I like to go to a different room myself, but most of the time, I like to be with everybody else.

*I have an endless supply of energy.  I never get tired and fall asleep in the car or take naps.  I go and go and go 100 mph all day long.

2. My sensory perceptions are disordered so my 5 senses interpret things differently than most people.

*Loud, screaming noises completely overwhelm me.  If I hear a baby cry, I lose my composure and would do anything to make that noise go away. 

*Sometimes I make loud noises myself to drain out all the noises around me.  If I am making noises please don’t think that I am trying to be disruptive.  Just know that this is my way of coping with all of the noises around me.

*I hate to go to loud events in enclosed areas like basketball games, wedding dances or other social events.  I would much rather stay outside and play where it’s quiet.

*My visual senses are under-stimulated, so I seek out bright, colorful, pictures, and objects.   I love to look through pictures of all of my friends, teachers, and family on my Ipad.

*My sense of taste is also under- sensitive so I love to eat things that are spicy, salty and have a lot of texture.  I don’t like bland foods.  My favorite foods are pepperoni pizza, chips and salsa, and peanut butter and jelly sandwiches.

*I have a very high tolerance for pain.  When I fall down, I usually don’t cry but jump back up and keep going.  I also love to jump off high things, because I love the pressure in my legs that the landing causes.                

3. Autism does cause limitations in my life.  Please distinguish between what I won’t do and what I can’t do.

*Like any other little boy, sometimes I get lazy, un-motivated and ornery.  There are things that I won’t do because I don’t want to do them.  There are things, though, that I really can’t do.  If I won’t do something, please don’t just assume that I am refusing to do them.

The Headlight: A Lesson in False Pride

I've never been particularly handy when it comes to car repairs.  In fact, you could probably say that I am more destructive than handy.  A few of Saturdays ago, though, I was feeling pretty confident.  My biggest problem, I was thinking, was confidence in my ability.  If I could be confident to tear into an auto repair project, then I could handle it.  When I realized that my first project was going to be changing a headlight, I was thrilled with my chance of success.

"How hard can it be?" I thought.

I picked up the replacement bulb from the Auto Parts Store and headed home with a single warning from the Sales Associate:

"Don't touch the bulb," he said.

I wasn't sure I understood what he meant, but figured I would get it by the end.

When I got home, I pulled out the Owner's Manual of my Nissan Altima and turned to the section about changing the bulb in a burned out headlight.  I was frustrated when all it said was: Please see your nearest Nissan Dealership.

"No Instructions?", I thought.  "They just want my money.  I'm going to just have to figure it out, myself."

When the Owner's Manual lists instructions for all kinds of car maintenance and repairs, you would think that I would figure out that if it said, Don't try this yourself, I would heed to that advice.  Most days I would have, but I was going to do this one way or another.

After about an hour, and moving from bolt to bolt, I had the entire front, left corner of my car apart and in pieces.  I had every part on the left and right side of the headlight either laying on the ground or pulled back away from the car.  The plastic piece of the car body, that sits right outside the headlight was flapping in the wind with a 1/2 inch crack from me bending it to get to more bolts.

With all of this apart and nothing to the right and left of the actual headlight box, I still couldn't pull the box out to replace the bulb.  I finally gave up after about an hour and 1/2 in frustration and defeat and slowly put all of the pieces back together as I had taken them apart. 

You would think that Saturday's defeat would have taught me my lesson but when my brother, another handy-man with his own little case of false pride, suggested that we try again on Sunday, I went for it.  Lee had his brother-in-law with him also, so this time we had three minds to get this thing done.

After watching a tutorial on YouTube and realizing that you don't actual pull the headlight box out to change the bulb, I was feeling like our prospects were pretty good.  Three hours later, with pieces laying out on the ground again and one lost spring directly involved in holding the bulb in place, we gave up in defeat again.

So, after about 4 and 1/2 hours, a crack in the left panel, and a lost piece, I think next time when the Owner's Manual gives me no directions and asks me to let a mechanic look at it, I think I will let a mechanic look at it.  I will stick to projects that have directions printed..

What about you?

Does False Pride ever cause you to tear into projects that you have no business doing?

Why Does GOD Feel Distant Sometimes?

A few months ago, while talking to a close friend, this question popped up.

He said, "Nearly every morning, soon after waking up, I sit down and read my Bible and spend some time with God in prayer.  Sometimes, he seems so close, like he is sitting next to me, and other times it feels like I might as well be talking to the wall.  Why does God do that?  Why does he step away sometimes?  It just doesn't make sense."

These questions really hit me that day.  They are questions that I have asked myself many times but I hadn't really talked to anyone about.  Growing up, I was always taught that the God of the universe wants to know me personally.  That if I seek him, I will find him.  In my experience, however, and I think in the experience of all humans, God doesn't always present himself close and within reach.

 Sometimes God's spirit will come out of nowhere and lift the hairs on my body and cause goosebumps to ripple across my skin and give me a sense of peace that is beyond understanding.  But sometimes, even when I am truly seeking him, it is as if there is nobody there. In these times, I often falter and begin questioning if he exists at all.

I am not a theologian and I don't think becoming one is my calling, but after pondering this question for a few months and talking to another friend about it, I think I have stumbled upon at least an inkling of an idea why God steps away sometimes.

God doesn't want the feelings of peace that he provides or our Quiet Time with Him to become an IDOL

As human beings, we are made to worship.  One way or another by choice or by pressure, we will worship something or someone.  If every time we pray, God instantly filled us with his peace and presence, we would Idolize those feelings that he gave us or would Idolize our Quiet Time with Him.  We would no longer seek after him. but would seek after that feeling.  God would basically become a drug to get a fix from.  No longer would God be in control, but we would.  He would basically be a genie in a bottle that we could make appear and give us what we wanted.  Although, we might think this is what we want, it was never supposed to work this way.

God does provide a peace beyond our understanding, but he does it on his time and when he knows it's what we need.  He is in control.  He is God and we are not.  Also, although he provides this peace, he is so much more than just a feeling.  He is way too big for us to put in a box.  Those feelings of peace are just PART of who he is.

I think it's related to why human eyes cannot see God.  If we could see God, we would worship his physical image and not who he actually is.  We would gather gold and make a sculpture of his image so we could bow down to it.   Again, we would try to put him in a box and we wouldn't respect that he is so much bigger and so much more than his physical image.  Many eyes did see Jesus, but he went away and sent his spirit instead, maybe for this very reason.

Instead, he wants us to seek after him and by Faith know that he will comfort us when we need it and will fill us with his peace when the time is right.  HE is in control and we are not.

I believe in Heaven and believe that the time will come when we will never have to feel this distance again.  But, for the time being, we can rest assured that if we seek after him, he will fill us with his presence, when we need it, not when we think we would like it.

What About You?

Have you ever wondered why God feels so close sometimes, but so far away other times?  Why do you think he keeps this distance?

Devan Joe: I'm SO Proud of MY Boy

"The van is here", Missy yelled as she peeked out our main door.

Devan's eyes instantly glimmered and a smile swelled across his face.  He grabbed his bookbag and took off out the door at a full sprint squealing with excitement all of the way to the school van.  Missy chased after him, buckled him up in the backseat and slid him a kiss goodbye. 

Just a few years ago, when Devan was first diagnosed with Autism Spectrum Disorder, uncertainty and fear filled our minds.  Flashes of dreams that we had for our little boy and had had since the beginning of Missy's pregnancy came crashing down like broken mirrors on the concrete sidewalk.

My son was going to love football.  My son, with his agile movements and quick bursts of speed was going to excel at football.  His adorable little face and handsome little body was going to have the girls knocking down our doors. 

It broke our hearts, as we went to social gatherings and saw all of the other kids playing together and Devan off in the corner by himself.  We screamed inside as our sorrow for him turned into sorrow for ourselves.  Why was he dealt this deck of cards?  Why was our family?

Slowly, over four challenging years, the dreams of who we THOUGHT our son was going to be have withered away and died like a flower after the first Fall freeze, as new dreams of who our son ACTUALLY is have blossomed like the most beautiful rose in the Spring.

In First Grade now, he absolutely loves school.  He writes, he spells, and he's begun to read.  He sits down and eats with the other kids and spends a large portion of his day in the regular First Grade Classroom.  We have been amazingly blessed with a great Teacher and helpers that really care about Devan and challenge him to succeed.

At home, he plays, he wrestles, he gets into trouble and gets arnery.  He teases his sister and picks on Mom and Dad.  Not always wanting to be alone, like in the past, he LOVES being in the same room as the rest of us and looks intently into our eyes as we speak to him.  He has started to say a few words here and there, but communication still is a big challenge for him.  His receptive language, however, seems to be as clear as day.  This Summer, after a few failed attempts and finally a one-day workshop, Devan has moved out of pull-ups into big boy underwear.  I honestly didn't think it was possible for Devan to get potty-trained without being able to tell us when he has to go, but he has done remarkable.

And as for the Football, I couldn't care less.  As his Dad, one of my goals is to find some activity that he really enjoys.  Once we find that, no matter what it is, that's what we will work on.  If he grows an interest for Football, so be it, but I'm not going to push that.  Whether it's swimming, taekwondo, or gymnastics, if Devan enjoys it, I will be there right beside him. 

I know that we have many challenges ahead, but I feel like we have reached a good spot for a sigh and to embrace the progress we have made so far on our journey.

What About You?

Do your expectations of how you think things should be get in the way of the beauty of how things are?  Let the old wither away and embrace the beauty of what God has planned with the new.



 

Sinner's Creed: A memoir by Creed frontman, Scott Stapp

The lead singer of multi-platinum, award-winning band, Creed, shares his personal story of an abusive Fundamentalist Christian upbringing, the self-destructive lifestyle of a Rock Star, and the healing power of God's Grace in his explosive, brutally honest, new memoir: Sinner's Creed.

In 1997, a little-known band of college students on the campus of Florida State University took the world by storm with such hits as My Own Prison, Higher, My Sacrifice, One Last Breath and their super hit With Arms Wide Open.  By 2003, after recording 3 studio albums, touring around the world, and selling millions of records, the band abruptly fell apart in embarrassment as massive egos collided and the lead singer, Scott Stapp, found himself buried deeply in alcohol and drug addiction.

In the years following, Scott Stapp quietly began a solo music career as the other band members formed a new band without Stapp.  Walking through much-publicized suicide attempts, severe depression and drug and alcohol addiction in the years to follow, Stapp finally surrendered his will to God and began to find healing. In 2008, after both Scott and his former bandmates stated that they would never work together again, Creed reunited with a new album and a National Tour across the United States. 

In this memoir, released on October 2nd, 2012, Scott Stapp walks us through his life as a child deeply scarred by learning about a God of punishment and impossible expectations from his stepfather.  These scars followed him throughout adolescense and adulthood finally reaching the surface as his band reached the top of the world.  Stapp walks us through the band's greatest success and biggest falls and how he found a life of sobriety through the 12 Steps of Recovery and the transforming love of Jesus Christ.  In his usual honest way, Stapp shares how that life of sobriety hasn't been a bed of roses but day by day he has begun to find the serenity and purpose that he has always reached for but could never find.

This was the best book that I've read this year.  I think any Creed fan would enjoy reading this memoir, particularly because throughout the book, Stapp describes the setting and the meaning behind many of the songs that he has written with Creed and on his solo projects.  Many Christians reading this book will also relate to the Fundamental viewpoints that Stapp was taught as a child and how those affected him as he grew up. 

If you are looking for a book full of graphic descriptions of the partying, drugs and sex that are part of the rock star lifestyle, you will not find that here.  Stapp does a great job of sharing what happened, even in a brutally honest way, but not glorifying the past sins in his life.  I particularly enjoyed this book for that very reason.

Overall, I would definitely recommend this book to anyone looking for a good story of healing and redemption through Jesus Christ.

Tyndale House Publishers provided me with a free copy of this book for use in a Book Review.  I was under no obligation, however, to give the book a positive review.