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Thursday, January 28, 2010

Where The Broken Are Swift And The Weak Are Strong

I hear religious minded people say all the time, with good intentions, “God will never place a burden on you that you cannot carry.”


My experience is that God will place a burden on you so heavy that you cannot carry it...alone. He will break your strong back and crush your independent will. He will buckle your stubborn legs until you fall flat underneath the crushing weight of your load. And there on the ground, flat on your face you will find written on the pavement of your pain, “My grace is sufficient for you, My power is made perfect in your weakness.”

When Jake was small, he could not walk very well at all. He wore braces on his legs to help keep him steady, but still ended up more on his face than on his feet. He ran like a newborn colt looking as if every step might be his last. Jake's favorite mode of transportation has always been on the back or the shoulders of his dad.

Whether at the mall or on a neighborhood stroll, up the stairs or down the stairs, when Jake had exhausted all of his strength and began to get unstable, I would pick him up off the ground, lift him high in the air and place him on my shoulders. He would always squeal with a kind of victorious joy at his new powerful position.

I think this is what the apostle Paul meant when he said in 2 Corinthians 12:10 "When I am weak, then I am strong." Paul knew better than any of us that falling and failing always resulted in God picking him off the ground and placing him high upon the strongest shoulders in the universe.

The physical and mental demands of raising a special needs child may never get easier and the emotional load may never cease to take everything you have on any given day. But remember, God plans it that way in order to bring you to a place of true strength. High on the shoulders of our heavenly Father is a vantage point of fortitude where the broken are swift and the weak are strong.

Thursday, January 21, 2010

Unassuming Heroes Are Hard To Find

Perhaps the greatest heroes around us are those who go quietly throughout life doing great things with little or no self recognition. And they keep doing these things not because they want to be renowned or held in high esteem, but because they just couldn't imagine doing it any other way. I have a hero in my life that fits that description.

His Name is Noah and he is my gentle giant of a son. He is also a brother and a friend to my special son, Jake. Noah has shared his life, his space and his room with Jake for the past 12 years. Before you think this is no big deal for brothers to share a room together, consider life with Jake.

Most mornings are spent coaxing Jake out of bed, getting him changed and dressed, teeth brushed, fed, groomed and off to school.

After school Jake goes into his “at home routine” that if disturbed can get real ugly, real fast. He takes over the bedroom with his TV shows and a pile of smuggled snacks. Jake is also a little OCD and must have the room arranged and re-arranged several times a day to his specific guidelines. He has a fascination with certain clothing and must change shirts 5 to 6 times a day. Going through the drawers and closets looking for new shirts like a pirate plundering a treasure chest, he can sometimes cause considerable damage to the things around him.

The evening is filled with bath time, more changing, more grooming, medication and finally bedtime. Jake only sleeps about 5 hours a night and that sleep is not very peaceful. He rolls, grunts and kicks the wall with his feet almost the entire night.

Add to this the smells of dirty diapers, the messes of smuggled and secretly stashed food and the constant invasion of privacy and destruction of personal property, one could understand if a typical teenage boy got just a little frustrated and demanded things change to better fit his own living arrangements. But Noah is not a typical teenage boy.

For 12 years he has not only helped with these special needs of his brother, bathing, changing, feeding, grooming etc., he has done so without ever grumbling, complaining or arguing about it. Not one time in 12 years has he said, "Dad, mom, I'd really like to have my own room where Jake can't tear everything up and where I can sleep undisturbed through the night…maybe a room that doesn’t smell so much like a nursing home."

(We actually tried to give Noah his own room once, only to find Jake curled up in the bed beside him the next morning.)

So the next time you find yourself measuring heroes by their athletic skill, superior strength, marketed wealth or articulated self promotion, I’d like you to consider some of the real heroes around us. Those heroes who quietly go through life doing what is good and right, not because they want to be credited or recognized, but because they just couldn’t imagine doing it any other way.

Heroes like my son.

Monday, January 18, 2010

"I Love You...No Matter What"

Almost daily I have to physically restrain my son. It is a physical battle to change his diaper and clean his body. Many times while cleaning and changing him I have been kicked in the face, bitten, smacked, clawed, or hit with flying objects. It is not all that uncommon to come away from a cleanup with a bloody lip or a new scratch.

Jake is the size of a small man now…and stronger than most full sized men. It takes at least two people to bathe him—one to hold him down, the other to scrub. My wife and I (and now my biggest teenage son) have developed a system of strength in numbers as we attempt to get in, get the job done, and get out without too much damage.

I must confess that on many mornings I leave Jake’s room dejected, hurt and emotionally drained. And many nights I find myself restraining the violent resistance of a struggling boy by wrapping him in my arms against his will and gently whispering, “I love you. I love you. I love you…no matter what.”

Most children are relational and have the ability to reciprocate affection. But what happens when the child cannot communicate love? How does the relationship between parent and child grow and thrive when the child is not relational? What bonds parent and child together when the child does not share in the affection? How do you care for someone that resists your care with violence and opposes your very presence even when your presence is for his good?

The only possible way to make any sense of this kind of relationship is to experience it through the truly unconditional love of God the Father. As I reflect on my seemingly one sided relationship with my son, I am forced to see how it is sometimes a portrait of my own relationship with God.

In the defiance of my son to be loved, cared for and washed clean, I am shown a portrait of the cross. The one-sided violence of love reveals a blurred vision of my own redemption, as a bloody, beaten, crucified Savior wraps me in His arms, subdues me with His affection and whispers in my ear, “I love you. I love you. I love you…no matter what.”

Saturday, January 16, 2010

Cleaning Up Crap and Preaching Hope

As a parent of a special needs child you have probably often seen yourself as a janitor. I know from experience that kids are messy, but special kids have special messes and some days it seems like we are spending our entire lives wiping butts, blowing noses, changing clothes, giving baths, brushing teeth and combing hair. Most parents go through a season of this and are able to graduate to a more independent child. However, some special needs children need a lifetime of basic care and even the basic tasks can become exhausting over the years.

Every parent rejoices when the baby is finally out of diapers, but imagine how tiring it is to change diapers several times a day for 16 years, knowing that there will be no graduation to independence.

As a parent of a special needs child, I have had to roll up my own sleeves and conquer smells and disasters that would make Mike Rowe’s “Dirty Jobs” look mild.

Once while at one of my youngest son’s Little League Baseball games Jake was sitting in the crowded stands between my wife and I when we simultaneously looked at each other with that panicked look of “Oh my goodness…what’s that smell?” (It has happened so many times that we don’t even verbally communicate it anymore. It just comes with a certain coded look we give each other).

We then looked at Jake, who was about 13 at the time—a fully grown teenage boy, and watched his face turn from beet red to ghost-rider pale. Knowing what was now in process I grabbed his hand and attempted to persuade him up and out of the stands. As he stood up, a soft, brown, rancid, liquid began pouring out the bottom of his shorts onto the bleachers.

(My mind instantly flashed back to the time at the crowded public swimming pool when I was trying to coax Jake down the slide into the water. Surrounded by about 20 preschoolers and soccer moms I watched in horror as the water coming down the slide into the pool turned brown. Like a scene straight from the movie “Jaws” mothers were grabbing their children and running from the water in hysterical panic. Not the first or the last swimming pool we have shut down.)

I tried my best to get his mind off of the “code brown” and onto evacuating the scene, but it was too late. As Jake’s sensory integration took over, the smell triggered his gag reflex and he began to gag and vomit. This only added to his embarrassment resulting in a fit of anger in which he began biting himself and screaming.

People began dispersing like it was a terrorist attack, some in anger not knowing my son had some underlying issues and some just out of uncomfortable fear. Finally in desperation I picked the boy up, threw him over my shoulder, and carried him out like a wounded soldier from the battlefield. I retreated to the car and then home for the cleanup while my wife stayed for the much tougher cleanup at the ball field.

Sometimes we are the janitor.

If you are the parent of a special needs child, or any child for that matter, then you know the role of the janitor. But I wonder if you have ever seen yourself as a pastor? By “pastor” I don’t mean leading a church and preaching to a congregation. In Matthew 18:12-14 Jesus teaches the disciples about the importance of the “little ones”.

What do you think? If a man has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray? And if he finds it, truly, I say to you, he rejoices over it more than over the ninety-nine that never went astray. So it is not the will of my Father who is in heaven that one of these little ones should perish.

The Greek word for “pastor” (poimen) literally means “shepherd” or one who watches over sheep. Pastors are called to shepherd the flock of God, the church. Jesus is also referred to as a shepherd or the “Chief Shepherd” in 1 Peter 5:4 and the “Good Shepherd that lays down his life for the sheep” in John 10:11.

In a similar way every parent is a shepherd and every child is a sheep. And which one of you, if you had a house full of children, and one was lost, would not leave the whole house full to go and find the one that was missing? I like to look at special needs parenting as just that. We are shepherding little lambs, some are broken and some run away.

Another very important job of the pastor is to (obviously) preach. Most of us would not consider ourselves preachers, but the truth is we are all preaching something to someone. Just the way we live our lives and respond to our circumstances can be a mighty sermon to those around us.

As you shepherd your special child never forget that you are, at the same time, delivering a powerful message of God’s grace and strength to those watching you. Through trouble, trial, perseverance and pain, God has used my son to demonstrate His strength and grace to hundreds—if not thousands of people.

Yes, its true we are called to be janitors. We must roll up our sleeves, get down on our hands and knees and do the thankless cleaning of messes that no one else could imagine cleaning up. But we are also called to be pastors and preachers, shepherding these little lambs and sharing God’s message of hope in the midst of all that seems hopeless to a watching world. And believe it or not, being a good janitor makes us better pastors and preachers.

Our message to the world is not, “I have it all together and I can handle anything that comes my way”. The message that every parent of a special needs child should be, “I can do all things through Him who gives me strength”. We carry this message not only to make much of God, but in making much of God to allow people to experience His grace and love through us.

Special needs parenting is a mighty message of love, patience, servant-hood and humility. (Your child is often the actual preacher of this message and you sometimes become the translator to an audience that cannot understand the language of God.) But what an illustration of grace your family becomes to those silently watching.

God hates pride. He hates it because it is an attempt to steal His glory and shirk our reliance and dependence on Him. He hates it because it kills our mission and our message. But the real reason God hates our pride so much is because He loves us so deeply. He has so many better things in store for us. So the next time you find yourself cleaning up messes that you think you are too good to clean up, remember God has called you to be a humble janitor in order to make you a better pastor and preacher.

Friday, January 15, 2010

Finding Greatness in Humility

One of my favorite passages in the Bible comes from Matthew 18:1-4 where Jesus is teaching His disciples about true greatness. The disciples are thinking of greatness in the typical fashion of power, authority and position. I would have loved to have been there that day when Jesus defined true greatness.

… He called a child to Himself and set him before them, and said, “Truly I say to you, unless you are converted and become like children, you will not enter the kingdom of heaven.

I have a sneaking suspicion that if there happened to be a little child with Down Syndrome or Autism in the crowd that day, Jesus would have pick them. For even the most intellectual of us are all mentally handicapped in the shadow of the Almighty.

After choosing a child from the crowd, and probably placing the child on His lap, Jesus sets the example and definition of true greatness:

“Whoever then humbles himself as this child, he is the greatest in the kingdom of heaven."

Greatness is defined by humility; the humility of a child. And even though children are not always humble, they are very good teachers of humility. Nowhere is this more evident than in the life and family of a child with special needs.

I smile even now as I think about the time we visited a large church in Louisville, KY where I was attending seminary. We took Jake to the nursery with the other kids and settled into the pew for some good edification from the well known pastor and preacher, who also happened to be a Dean and Professor at the seminary.

About half way through the sermon I noticed the Nursery Director peeking through the doorway that led to the choir loft behind the pulpit. (This Nursery Director ended up being one of our best friends--Jake always had a gift for choosing some of our best friends.)

It soon became obvious that the Nursery Director was searching for something, or someone. As I scanned the empty choir loft I found what she was looking for. The soft red hair of my son slowly began to rise above the choir chairs centered right behind the pastor.

As Jake rose from the balcony like an angel in a Christmas pageant, every eye in the congregation became fixed on him. Jake, knowing that he had now fully captured the attention of the congregation, stood fully upright crossing his arms with a smile of victory. The Nursery Director began frantically trying to coax him towards the door with no success. He wasn’t giving up this spot for all the animal crackers in preschool.

What made the situation even more chaotic was the fact that Jake had positioned himself right behind the pastor and so it appeared to the pastor that all eyes were on the preacher and the sermon. However, it became rather confusing for the pastor when the entire congregation began to snicker at the antics of the nursery worker trying to persuade Jake.

The snicker turned into a steady rumbling laugh as the nursery worker got down on her hands and knees and low crawled like an army commando behind the chairs trying to capture Jake only to be thwarted as he ran down the isle to the next row of chairs. Finally, when Jake sternly crossed his arms in defiance and shook his head as if to say, “No way teach” the congregation broke out into a full belly laugh.

The pastor grew more uncomfortable still not knowing what all the commotion was about, no doubt wondering if he had said something funny, done something wrong or his pants had just fallen down.

In the meantime I sank lower and lower in my seat looking for the nearest exit leading to anywhere but here, until my wife finally elbowed me and said, “Go get him!” In my humbled state, I rose from my pew walked to the front of the church, up into the choir loft, and led my son back to the nursery from which he had escaped, both of us waiving to the congregation in proud humiliation.

I’m not sure what the pastor was preaching on that morning. For the life of me I cannot remember a single word or verse from his message. But neither the pastor, the Nursery Director, nor I will never forget the message that Jake preached that day to about 600 people.

It was a sermon on humility--the humility of a child.

Thursday, January 14, 2010

At The End Of Your Rope...Waits Purpose and Hope

Shortly after Jakes first birthday came the day that our world and life as we knew it, and hoped for it to be, was forever changed. I was at work and Kim had placed Jake into a backpack carrier and had headed out the door to walk to her sister’s house just three blocks away.

When she arrived, Kim’s father noticed that Jake was sleeping and asked why his lips looked blue. Kim immediately in a mother’s panic turned to Jake to see him unresponsive, unconscious and not breathing. The nurse in her took over instinctively with choking drills and CPR. An ambulance was called and Jake was transported to the hospital. He came in and out of consciousness during this time but would continue to stop breathing, turning blue and appearing lifeless.

I received a call from 911 and rushed to the hospital in my police cruiser with lights and sirens blaring. After being stabilized and medicated, Jake was admitted to the pediatric unit for observation and testing. Kim, having an extensive medical background, knew exactly what it was. The doctors affirmed her diagnosis when they told us that Jake was suffering from apnea related seizures.

One minute he would be fine and then the next minute he would stop breathing, go limp, turn blue, stiffen out and then wake up again crying. There was absolutely nothing we could do to get him to breathe during the course of the seizure. It just had to run its course. In the hospital he was sedated and hooked up to every tube, wire, cord and machine imaginable. But even with all the medical technology available, the doctors still could not tell us what was causing the seizures or how they could be stopped.

They finally sent us home with a monitor to watch his heart rate and breathing along with some seizure medicine to hopefully control the seizures. For many nights thereafter we would be awakened in the middle of the night by the shrill sound of the breathing monitor (sounding something like a household smoke detector). Jumping out of bed from a deep sleep, we would run into his room, look into his crib and find Jake lifeless and blue as if he were dead.

It was a taxing time in our lives to say the least. The lack of sleep, stress of work and the distress of uncertainty eventually took its toll in breaking us down physically, mentally and emotionally. Even now as I look back I can feel the tightness in my chest and the pain of disappointment, hopelessness and stress. Kim and I were so young and the whole parenting role just kind of fell into our laps. We didn’t know what to expect. But we never expected this. We were both working opposite shifts in order that one of us could be home at all times. We were passing each other in the doorway with a glancing hug or kiss, too exhausted to make much sense out of anything. We loved this little boy so much and we were doing all we could to give him what he needed, but we felt so helpless.

Over the next year the seizures progressed along with our mental fatigue and growing hopelessness. We took Jake to every doctor and specialist we could find, in and out of hospitals and doctor’s offices. With every visit came a new drug, a new solution with anticipation followed by faded hope as the seizures continued. By this time Jake was in a perpetual stated of stupor. From the seizures to the drugs given to control the seizures, his happy, bubbly personality sunk to a dazed lethargic existence.

It was sometime in the midst of this dark season that we both came to the end of our rope and the bottom of our strength. And it was here in this pitch black pit of desperation that God showed up. Actually, we found out that He had been there all along patiently pursuing us with His enduring love. We both considered ourselves to be Christians at the time but there was little evidence to our professed faith.

We discovered that there is a time and place where faith is tested and made evident. Few comfortable, stable people find that place. It is reserved for those who truly come to the end of themselves and find that the hole in their soul stuffed with every solution the world has to offer can only be satisfied with the One thing that it was created for. Like the Apostle Paul we later understood that, “Indeed, we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead.”

From that point forward we approached life and our son’s illness with faith and hope, not that God would miraculously heal Jake, although we prayed He would, but more importantly that God would be our strength through this life He had so mysteriously planned for us. We were chosen by God for what appeared to be a lifelong mission. It was not our tragedy, it was our calling.

Wednesday, January 13, 2010

"What Do They Call Children Like This Today?"

There seems to be a lot of concern these days about kids being re-educated not to use the word “retarded”, which has become one of the most used of all derogatory words aimed at describing someone or something that is really unintelligent.

I understand the argument against using this word, but if you are not going to label kids who are “behind the curve” with this word than why not use it for a descriptive word? One of the funniest (and intelligent) things I’ve ever heard was an autistic child calling a mainstream kid “retarded” when the kid said something really stupid.

Years ago an older lady, who was lost for an expressive phrase, referred to my son as "retarded". Then, nervously, she asked, "What is it they call children like this today?" This well meaning lady had lived in an era when the word “mentally retarded” was the universal label placed on everyone who had any type of learning disability. In her day if you were less than normal on the Bell curve you were “slow” and if you were too slow you were “retarded” (which is actually synonymously redundant). So back to her question, “What is it they call people like this today?”

I like the label “special needs”. Again, the argument against using the term is why I like it most. The argument against it says, “It’s too broad. All kids have special needs.” Having four of them, I couldn't agree more. And I think that’s why I like this label best. Instead of totally segregating these children, this term lets them be part of the group while allowing helpful consideration for their limitations. It also allows the rest of society to remain empathetically comfortable around these children. Everyone can relate to having special needs…we all have them. Again, let me stress that this whole game is just semantics and is only helpful if it is helpful to the parent and the child.

I can remember the panic that overtook me when the doctor diagnosed Jake as “developmentally delayed”. Later it became “developmentally disabled” then “Severely developmentally disabled”. When he stopped breathing he had an “apnea seizure disorder”. When he became extremely sensitive to touch and sounds he had “sensory integration disorder”. When he could not speak he was “ankyloglossitis non-verbal”. When his eyes crossed he had “strabismus”. When the bones in his legs began to bow he had “osteoporosis”. When he spent his entire day lining up objects, he had “obsessive compulsive disorder”. When he could not sit still for one moment, he had “attention deficit disorder.” When he received the diagnosis of “autistic” it had to be supplemented with “pervasive developmental disorder non-otherwise specified.” When we participated in Special Olympics I noticed their label of preference was “intellectually challenged”

Pretty soon, the labels and diagnosis became mundane and almost comical. So when someone would ask, “What’s wrong with your son?” I could either reply with, “He is severely developmentally delayed and intellectually challenged with a history of apnea seizure disorder mixed with sensory integration, ankylo-glossitis and a bit of strabismus added to his obsessive compulsive disorder and attention deficit disorder and a slight autistic bend into pervasive developmental disorder non-otherwise specified.” Or I could just say, “He has some special needs.” To which most people could comfortably reply, “Don’t they all honey.”

This is my son

My son’s name is Jacob, we call him Jake. He is named after the grandson of Abraham, the youngest son of Isaac in the Bible; the son who was born small, weak, and insignificant but who was nonetheless chosen by God to father a nation of great and mighty people. God works like that. The Bible says He often chooses the foolish to shame the wise; the weak to shame the strong. Or maybe He chooses the foolish and weak to teach the wise and strong that true wisdom and strength comes not in ability, but in reliability on something or Someone wiser and stronger than yourself.

Living with and raising my son over the past 16 years has taken everything from me. It has sapped my strength, scattered my brain, broken my heart and tested my faith. But it has also caused me to see that this is not just my son’s story, it is my story. It is the eternal story of God's grace with me.

In perspective, I am the handicapped one here. God is my Father, so gently and patiently caring for me and meeting my needs. He pursues me into the busy roadways when I run off uncontrolled and He holds my hand in the crowd so I won’t get lost. He feeds me, cleans me and dresses me. He understands my silence and speaks for me. He takes up for me and defends me. He cares for me. And even when I resist, even when I fight Him, even when I throw my fits of refusal, biting and screaming and kicking in disobedience, He holds me tight and gently whispers in my ear, "I love you, no matter what."

At the end of the day He puts me to bed, tells me His story in a way that I can understand it and softly kisses me goodnight. He has compassion on me because he knows how I am made.

This is my son...and this is me. I am raising him but he is teaching me. He is teaching me lessons of unconditional love and devotion. He is teaching me to look with perspective on my life. He is teaching me all about patience, forgiveness and fortitude. Most of all, through the life of a mentally challenged, physically disabled child, I am learning all about the grace of a sovereign, loving, forgiving and gloriously mighty God.

I hope these posts will help those who might be on this same kind of journey to find faith and strength to stay the course. There are many lessons to learn along the way.