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One More Night With The Frogs

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photo credit museum.wa.gov.au 

 

The rhythmic croaking was strangely melodious.

 

I would mentally filter out all the other background noise that flowed out of the woods adjacent to our house. The birds, the crickets, all the other sounds would fade away until I could only hear the frogs.

 

They croaked in a harmonious symphony to a steady rhythmic beat. And I, for some reason, found it peaceful and soothing to my soul.

 

I would slip out the back door of our little house where I had just relocated us in a new town.

 

I’m from a small rural town in Tennessee and I married a “city girl” from Nashville. When Becky and I married she made me promise her that I would never move her out of the city and back to my hometown. I did what every prospective groom would do- I promised her I would never move her.

 

Four years later I moved us back to my hometown and changed careers.

 

Every night I would quietly sit on the back patio and pray that I had made the right decisions and choices. I would pray over my wife and I would pray over our unborn child. I would search my heart and seek God’s heart about what was going on in my life. I would pour out my worries, my concerns, and my doubts. I would pray for his wisdom and favor over us.

 

Somehow, the sound of those frogs singing in the background became a powerful, tangible reminder to me of God’s presence.

 

It would often seem like the breeze would get a little stronger, and the sound of the frogs a little louder as I sought God.

 

The whole thing reminds me of the great story in the Bible concerning Moses, Pharaoh, and the plague of the frogs.

 

God wanted to demonstrate his great power and presence to Egypt’s Pharaoh so he sent a massive influx of frogs across the lands of Egypt. There were frogs everywhere! On land, in the water, in their homes, in their clothes- there was no escaping the presence of the frogs.

 

Which showed there was no escaping the presence of God. He was like the frogs- he was everywhere. Every night when Pharaoh would go to bed, the sound of all those frogs would remind him of God’s great power.

 

This weekend we will be spending the weekend at Vanderbilt Children’s Hospital with our son. Jon Alex will be hooked up to machines all weekend in the Epilepsy Monitoring Unit as we try to get a better grasp on his seizure activity.

 

In all transparency, I dread this weekend.

 

It also happens to be one the busiest times ever for me professionally. Several projects are all colliding at the same time. Deadlines and obligations loom. Decisions need to be made and directions need to be given.

 

So last night, I prayed over Superman and tucked him into bed. I said goodnight to Wonder Woman as she went off to our bedroom.

 

Then I quietly slipped out on to our back deck, as I like to do after everyone has gone to bed. It’s been seventeen years since I started doing this, before Jon Alex was ever born. The breeze was stiff and warm and you could tell a thunderstorm lurked nearby.

 

I poured out my worries and anxieties to God. I prayed for wisdom in all things, and I prayed about our looming weekend in the hospital. I prayed over my family and I prayed for myself as the leader of my family. I ripped my heart open and bared it in front of God.

 

And then I lowered my head and became still in my chair. I sat in silence before my God and tried to block everything else out of my head.

 

That’s when I noticed them for the first time.

 

From the farmland behind our subdivision came that unique, calming sound.

 

I could hear the frogs. Steady, constant, rhythmic. The frogs chirped.

 

It was as if God was gently reminding me again of his power and presence. That he is still with me and always will be with me.

 

One more night with the presence of God guiding, directing, and ordering my life.

 

One more night with the frogs.

 

Goodnight Superman. Goodnight Wonder Woman. Goodnight Lord.

 

All is well.

A Letter to the Dad in the Red Cap

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If you haven’t seen the video of the father dancing with his wheelchair bound daughter at a pageant, you have to watch this clip here.

 

 

Dear dad in the red ball cap,

 

I just watched a video of you dancing with your daughter with special needs at a pageant. She was in a wheelchair so you did most of the movement in the dance.

 

Actually I had to watch it twice because the tears in my eyes made my vision too blurry at the end of watching it the first time.

 

 

I’ve never seen a more beautiful dance.

 

I too am a dad of a child with special needs. And I am speaking for a lot of your fellow special-needs dads.

 

I want you know sir that if we ever have a Hall of Fame for fathers of children with special needs, we are going to need your red cap and white t-shirt for your exhibit in the Hall of Fame. If you had a number on your shirt, we would have to retire it and hang your t-shirt from the rafters.

 

See, you think you just showed your undying love for your daughter by your incredibly moving and beautiful performance with her.

 

You did so much more than that sir.

 

You showed the world what a rare and treasured gift your child with special needs is to all of us.

 

You demonstrated that a child with special needs is God’s masterpiece and should be on display for the world to see.

 

You showed a generation of special-needs dads that unconditional love, courage, and sacrifices are the very definition of strength in a father.

 

You showed all the men, who just gave up on their children with special needs and walked out the door, that they have turned their backs on the greatest gift they have been given.

 

You did something with your daughter that she will never forget. Most of the rest of us won’t forget it either.

 

A lot of men, most men, will say, “I could never do something like that.”

 

They are right. But you are a real man sir. 

 

Only a man who realizes that his daughter with special needs is the biggest joy in his life, and who is willing to do whatever it takes to make her smile, would do that.

 

Her body may be disabled, but her soul was dancing.

 

Well done, sir. Well done indeed.

 

We all needed to see that.

 

I don’t know what the crowd did at the end of your performance with your daughter.

 

I know I stood up right at my breakfast table and gave you a standing ovation.

 

I’m also pretty sure I heard all of heaven applauding with me.

 

 

Yielding My Pen to Greg Lucas

 

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On Thursday of this week, I make my debut as a writer for 1corinthians13parenting.com. This is an amazingly gifted team of folks who write from a variety of perspectives on parenting. I am joining the team to contribute from the perspective of a father of a son with special needs. Earlier this week, I posted a new piece over at comfortinthemidstofchaos.com where I am a contributing author, and last week I wrote a Father's Day piece on this blog.

 

As I sat in front of my computer this morning, in all honesty, I didn't feel any inspiration at all for a new piece. I became frustrated that I was fresh out of ideas for now, and didn't  feel like I had a new perspective in me at that moment.

 

And then I saw it. Beautiful. Powerful. Profound. Moving.

 

I read a piece by Greg Lucas, author of the awesome book, Wrestling with an Angel, A Story of Love, Disability, and the Lessons of Grace. Greg is a fellow dad of a son with special needs. The piece was entitled "Agents of Grace." If I'm honest, I was a little jealous of just how well-written it was.

 

NowI realize why I was struggling to find something to write about today. Because nothing I could write today could surpass the words that came from Greg. I have never, to this point, posted something from someone else or had a guest writer on my blog. But what Greg wrote moved me, and spoke to me. I think it will have the same effect on you. Every parent of a child with a disability or special need must read this. So I yield my pen today to Greg. I asked him if I could post this on my blog. I hope it inspires you as much as it did me!

 

Agents of Grace
June 10, 2014 by Greg Lucas 

 

We took our son to his annual dentist appointment a few days back. Not really exciting or extraordinary news in the schedule of a typical family. Then again, nothing is typical for our tribe.

 

Autism, PDD, and sensory integration disorder make the dentist office one of the most fearful places on the planet—and not just for Jake. We have emptied more than one dentist office in our many years of trying to do “normal” with the abnormalities of our son.

 

So now, under the advice of doctors, nurses, dentists and dental hygienists everywhere, we get Jake’s dental work done at the hospital, in outpatient surgery, under general anesthesia.

 

It is one of the most stressful days of the year for us, and him, and everyone else lucky enough to have made their hospital appointment on this day.

 

Every year I worry about the anxiety of my son, the labored concern of his mother, the general danger of anesthesia, the stares from the waiting room eyes, the thoughts of the doctors, nurses and health care providers (who are really going to earn their money on this day), not to mention the filling and pulling of teeth and the aftermath of recovery.

 

This year was no different from the rest. It began with trying to pre-medicate Jake just to get him in the front door of the hospital. The doctor prescribed one valium before leaving home, which had absolutely no affect on him whatsoever. In the pre-op waiting area Jake was given liquid versed (Midazolam), which would normally send a grown adult to the third heaven. This also had little to no affect.

 

Finally, in a last ditch effort to simply get our son onto the hospital bed, the doctor snuck up behind Jake like the Crocodile Hunter and hit him with a small tranquilizer dart in the arm. In what resembled this scene from the movie Madagascar, Jake was properly prepped for the annual visit to the dentist. 

 

Nearly three hours later the dentist met with us in the waiting room and gave us the bad news. “I had to do a lot of work in there this time. Pulled a couple teeth and filled most of the rest. It doesn’t look good for the future.” As if that wasn’t hard enough for worried parents to hear, he finished by saying, “You might want to take a lot of pictures of you son smiling this year, it wont be long till I have to take them all out.”

 

We didn’t have much time to sit and contemplate what the dentist had predicted. Just when we sat down again, the nurse came out and informed us that Jake was waking up.

 

This was the most dangerous time of the dentist visit. Sort of like the tranquilized lion waking up after the veterinarian finishes his work. You don’t want to be around for that. So, our mode of operation from years of experience is to go and get Jake while he is still slightly drugged, put him in a wheelchair and rush him out of the hospital before he comes completely unraveled.

 

An extremely nice, well-seasoned nurse helped me get Jake dressed. She was very gentle and soft-spoken. I was glad God chose her for this day.

 

Kim stayed behind to sign all the necessary paper work and I accompanied the nurse as she pushed the wheelchair and our sedated son down the hallway, past the waiting room, toward the elevator.

 

We were almost there.

 

The plan was going well until I made the mistake of thinking Jake was groggy enough to take the elevator. Note: Jake doesn’t do elevators (a story for another time). So as soon as I pushed the elevator button and the door opened, Jake fully awoke, flung himself out of the wheelchair and into the floor, screaming and thrashing like he was on fire.

 

He was too drugged to walk, but not drugged enough to get on the elevator. He was bleeding from his mouth where the teeth had been pulled so there was blood spilling all over the white hospital floor as I was struggling to coax him back into the chair and onto the elevator.

 

The screams grew louder and the blood flowed brighter.

 

Gentle, soft-spoken nurse struggled to lift Jake’s deadweight body off the floor as I struggled to figure out how to lock the wheels on the wheelchair. Beads of sweat formed on my forehead and my face began to flush as I imagined what was going through the minds of the nearly full waiting room behind us.

 

Then the longsuffering nurse looked at Jake and asked, “Do you want us to help you take the stairs?”

 

Magic words.

 

Jake immediately jumped up from the floor and headed unsteadily for the stairway exit with me supporting one arm and the nurse supporting the other. He was overjoyed that he didn’t have to take the elevator. He was so overjoyed that he stopped every two or three steps and kissed the nurse right on the cheek—big, sloppy, drunken, bloody kisses.

 

I apologized for the muddled morning this poor lady had to endure. She just smiled and didn’t even wipe her face.

 

There were about three hundred steps between the elevator and the exit doors two flights down. That translated into about one hundred kisses for the nurse, and probably fifty or so apologies from me. And, as usual, I was so caught up in my own pride, that I didn’t see what God was actually accomplishing in the hospital this day.

 

Nearly twenty minutes later we reached the bottom of the stairway. Ten minutes after that we walked out the exit doors of the hospital where Kim was waiting with the car. As we exited the hospital, Jake leaned back and gave the nurse one last kiss on the cheek. And I gave one final apology. I was sure she drew the short straw for work today.

 

And that’s when it happened. The gentle, soft-spoken nurse looked me in the eyes and said, “Will you stop apologizing! I needed every one of those kisses today!”

 

I thanked her again, put Jake in the car, and we were on our way.

 

Not until later, after the adrenaline dump, after the stress-headache was gone, after I was back at my office staring at my computer screen wondering what it was going to be like having a toothless son, did the words of the gentle nurse get past my ears and sink into my heart.

 

“Will you stop apologizing! I needed every one of those kisses today!”

 

Stop apologizing; people need your son! Stop worrying about the stares; people need to see the hard days of your life.

 

On the most stressful day of the year, God makes your son an agent of grace, and your life is on display to a world that does not understand the strength of true weakness—a people that cannot comprehend bloodstained kisses or muddled love.

 

But they need to understand.

 

And so God sends a broken boy into their midst, and into the life of a weary nurse. And He puts your whole messy life on display. And no matter how many steps it takes to get you to where you need to go, He takes them all with compassion—one step—one kiss at a time. And no matter how many times you apologize for the inconvenience, the weary, watching world accepts each kiss as being straight from God.

 

“But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ ” (2 Corinthians 12:9-10)

--Greg Lucas

 

Greg Lucas is a police officer in West Virginia, a graduate of Boyce college, and a Bible teacher and advisor for The Elisha Foundation, which encourages families experiencing disability toward a more intimate faith in Christ. He is also the author of Wrestling with an Angel: A Story of Love, Disability and the Lessons of Grace. Greg blogs at sheepdogger.blogspot.com.

 

 

Help Wanted

 

jeff and ja

 

Next week another Father’s Day arrives. This will be my 16th as the father of a son with special needs.

I was thinking today about all the new dads of children with special needs who will be celebrating their very first Father’s Day this year, and the ones who just received a diagnosis this year.

On a typical day, approximately 159 dads in the United States learn for the first time that their child has autism. That means that over 58,000 dads are observing their first Father’s Day as dads of children with autism this year.

 And that’s just one of many special needs.

Search engines will be fired up. Appointments will be made with Dr. Google. Questions will profoundly outnumber answers. Emotions will range from confusion, anger, disappointment, blame, and denial, to just feeling overwhelmed.

The worst part to me is that in about three years, too many of those dads won’t even be around at all. They’re gone. Checked out. Cut and ran.

Many of the ones who will stay are going to hang around in body only. They’ve checked out mentally and relationally. They aren’t really involved or engaged with their kids.

Vacant dads.

I wish the 30-year old dad of the newborn son I once was could have known the 47-year old dad of a sixteen year old son with special needs that I am now. I could say, “Listen I’ve been where you are. Your life didn’t just end. In fact, this is only the beginning of the most amazing ride of your life. God is going to teach you and reveal things to you that you can’t even imagine.” 

“Sit down, strap in and buckle up. If you want to soar and fly as a special needs dad, you’ve got to survive the takeoff and expect some turbulence along the way."

“You will soar to heights as a dad, a husband, and a man that you can’t imagine. What a gift God has given you! You are one blessed man.”

That’s what  the older me would have told myself when I first started down this path. That’s what I wish an older dad would have said to me.

It’s time for those of us dads who do “get it” to step up to the plate. It’s time for us to quit lamenting and just talking about the dads who leave, or who might as well have left. It’s time for us to try to do something about the problem my friends.

It’s time for special needs dads to step up and mentor new dads. It’s time we quit talking, and instead show them how to be fathers to our children with special needs. Teach them, model for them, and pour into other dad's lives.

It’s time we taught them, encouraged them, and inspired them. It’s time we take responsibility for a generation of kids with special needs growing up fatherless and we say, “That’s enough!”

“In the same way, encourage the young men to live wisely. And you yourself must be an example to them by doing good works of every kind. Let everything you do reflect the integrity and seriousness of your teaching.” (Titus 2:6-7, NLT)

It’s time we volunteered to mentor single mom’s kids who have no father figure in their lives either.

The gift we have been given is too valuable not to share. My son with special needs has been the most amazing blessing in my life. I have an obligation to share that blessing with other dads.

You don’t hide a Picasso in the garage. You don’t keep Michelangelo’s David sculpture in the basement.

You’ve been given a treasure. Share it with everyone else.

 

 

Sometimes Better Follows Worse

Twenty-three years ago

Twenty-three years ago

 

 

“No deposit, no return.”

My father-in-law whispered those words to me as he gave me his daughter’s hand at our wedding.

This Sunday will be our 23nd wedding anniversary.

Ironically we will spend it leading a marriage retreat for couples raising children with special needs.

I don’t know if I believe in love at first sight, but I do believe in love at two weeks. We had only been dating for two weeks and I knew Becky and I were going to get married. I tested the waters by whispering; “I think I’m falling in love with you.”

I threw that, “I think” in there to give myself a little wiggle room, an escape route if necessary, but I knew.

We went to a fireworks show casually with a group of friends one night right after we met. They tell me the show was spectacular. I don’t remember anything about the show. The fireworks in my head and heart drowned out the fireworks show.

We got engaged in three months. I kind of failed to tell my parents I was dating anyone until we took them out for dinner and I introduced them to her and said we were getting married.

Probably should have thought that one through a little more.

Twenty-three years.

A lot has happened since that Saturday afternoon on May 18, 1991.

When we got married we planned on me having a successful business career climbing the corporate ladder. Becky was going to teach school for a while. Then when the time was right, she would stay home to raise our children and we would live in a big house in the suburbs. We would lead a perfect life in a perfect world as the perfect family and she would be the PTO president.

It was, in fact, a perfect plan in my eyes, because I came up with the plan.

I had written the story of my life, but I didn’t realize at the time that the story to be told wasn’t about me.

When you recite traditional wedding vows, there is always that phrase, “for better or worse.” We took that vow as part of our wedding ceremony. Like everyone else though, we only focused and assumed on the “better.”

Have you ever noticed the “better” always gets mentioned first?

The “worse” is almost thrown on like an afterthought.

Since that day 23 years ago, my plan has been totally thrown upside down.

We lost our first child.

I was across the country on a business trip when it happened and unable to be home when my wife needed me the most.

Our second child Jon Alex has profound special needs. His cerebral palsy, seizures, and autism have let him as a now 16 year old boy completely non-verbal, unable to walk, and utterly dependent upon us 24/7 young man.

He requires our absolute constant attention and care for everything. Over the course of his life, he has never been able to say even one word.

No one can prepare you for the grueling, exhausting, draining task of caring for a child with profound special needs. You will never attempt anything harder in your life. And it will affect everything about your life- emotionally, financially, spiritually, relationally and mentally.

The toil it takes on your marriage is staggering. It’s intense and even brutal. But we had taken a vow. Our marriage was based on a covenant, not a contract.

We learned a whole new vocabulary- sensory processing disorder, occupational therapy, physical therapy, quadriplegia, and so forth. We learned a whole lot of new acronyms as well like, IEP, AFO, and CFGF.

Then there was the night I died.

Five year ago I stopped breathing. A health incident left me in a coma on life support for several days with only a slim chance of a full recovery. I spent months in a wheelchair requiring 24/7 care myself now. I had to have help bathing, eating, moving around, and learning to walk again.

For months my wife had two special needs individuals requiring her constant care and attention, as she took care our son while nursing me back to health.

That’s when I realized I had married Wonder Woman. And I wonder every day why God chose to bless me with her as my wife.

I am not the easiest man to love even under the best of circumstances. I’ve got my quirks, my hang-ups, and my character flaws.

I’m not exactly a “ off the rack” type of guy. I’m a high maintenance custom job type of guy who deep down struggles with insecurity and pride at the same time. Do you see what I mean?

Without the grace of God in my life I would be a train wreck.

At the age of 40 a lot of men realize half of their life is over and begin to take stock of their life. I did that too.

But instead of buying a convertible, a boat, or dying my hair- I did something more drastic.

I quit my six-figure income job.

I made us sell our 4,000 square foot home, both our SUVS and half a house full of furniture.

I took a 75% pay cut, cashed in my paltry savings, moved us out in the country, and changed my life’s vocation.

Most importantly I changed how I kept score.

I told Becky God was calling me to leave the corporate world, and start a ministry for special needs families. She asked when we could start.

She could have called me “crazy.” Instead she called me “chosen.”

She could have said you can’t do that to our family. Instead she said, we would do this together.

Nothing has gone according to my plan. But everything has gone according to God’s plan.

Our 23 years of experiences, 16 with our special needs son, have been richly rewarding, richly enriching, and left us richly blessed.

We are stronger, more determined, more together, and more incredibly blessed through our life than we can imagine.

What should have divided us has instead united us.

What was intended to harm us, has once again by God’s grace and plan, been redeemed and reclaimed for good according to His purposes.

Turns out that God’s plan was the perfect one. He's just using us to tell his story.

For all of you in the midst of the struggle…for all you special needs moms and dads about to throw in the towel and quit…for all of you ready to just give up and walk away…for all of you wondering if it ever gets better…for all of you struggling to find anything good about your circumstances…

Sometimes “better” follows “worse.”

 

(This post was originally written on our 22nd anniversary last year. Now it’s ben revised and updated for this year as we celebrate our 23rd anniversary.)

Because Every Day

Each other's hero

Superman and Wonder Woman (aka Jon Alex and his mom)

 

My son doesn’t even know that this Sunday is Mother’s Day.

His cognitive challenges and developmental disabilities preclude him from even understanding what Mother’s Day is all about.

So, by himself, there won’t be any presentation of gifts to his mom. There won’t be any special card he picked out for the occasion. There won’t be a handmade present or even a “Happy Mother’s Day" comment, since he is non-verbal as well.

Mother’s Day to him will just be like every other day.

He will wake up at 4:00am as usual because he has no concept of time and thinks that since he woke up, it’s time for everyone to rise. So his mom will get up with him to change him, take him a favorite toy or start a favorite video.

Many times she will also have to change his sheets in the night as well.

He is on a very special diet with no casein, no glutens, no soy, and no processed foods at all. So she will begin the process of not just cooking his breakfast, but also cooking his lunch and dinner as well.

She prepares his medications for the day. She has to put his pills into tiny capsules for him, because he won’t swallow pills. Then she pulls out clothes for him, cleans him up, and dresses him.

As she feeds him breakfast, she will pray over him and their day. It’s a holy moment. They pray for protection, blessing, safety and God’s favor on his life. They pray for his teachers, his classroom helpers and therapists, family members, and a long list of people who haven’t been introduced to Jesus yet.

She speaks affirmation and encouragement over Jon Alex telling him how proud she is of him, and how glad she is that he is her son.

Next she drives him to school and goes to work herself, ministering to and encouraging other moms of special needs children like herself all day long.

Afternoons after school are full of doctor’s appointments, therapies, laundry, household chores, ministry obligations, and tending to his every need.

He requires 24/7 care in all things so he can’t just be left to entertain himself for very long at all. He constantly needs her attention for even the smallest things.

She swings him in his platform swing, prepares our dinner, and holds everything together until I get home from work to help.

While I feed him his dinner, she eats hers standing up because she is multi-tasking, simultaneously doing other things. Tonight she is trying to find shoes that will fit over his braces online and working on an upcoming event at the same time. Her allotted dinnertime is about 7-8 minutes.

As I do his nighttime swinging time with him, she does the dishes and cleans the kitchen.

Next she runs his bath (his favorite activity of the day), makes sure the bath lift is in working order, and gets his clothes ready for the next day.

For the next 45 minutes, as he lays in the bath, she will sing to him. Over and over she will sing his favorite songs, as he lies there with the most content happiest smile on his face.

She dresses him for bed and walks him to the edge of his bed, praying softly over him the whole time.

That’s when it happens.

That’s the moment you just can’t miss.

That’s the moment when God smiles, and I tear up.

Just before he lies down, he will throw his arms around her neck. He will tilt his head to the side. And very gently, with a toothy grin on his face, he leans in and he kisses his mother on the cheek.

Every night.

Always.

Every night ends with a kiss on her cheek.

Because every day is Mother’s Day to my son Jon Alex

Neither one of them needs a card to prove it.

Special Edition- Teacher Appreciation Week

jateacherphoto

 

My parents were my educational bookends. My mother was my Kindergarten teacher and later when I was in high school, my dad was one of my teachers as well as my basketball coach.

That’s why I say they were my educational bookends. I started down the road of my education with one, and concluded high school with the other.

Education was non-negotiable in our house. It was never “if” I went to college, it was always “when” I went to college.

So four years after I graduated high school, I graduated college with my degree as well.

I even married a schoolteacher for crying out loud.

I’ve seen the long hours. I’ve seen all the after hours, nighttime, and weekend work that goes into being a teacher or working at a school too. I have first hand witnessed the frustrations, the trying to make do with what little resources are available, and the stresses of being an educator.

If you think it’s just some cushy 8-3 job, you have no clue what these professionals really do, or the impact they make in our children’s lives.

You would not be reading this blog today if weren't for six teachers I had over the course of my educational life.

Ms. Allison and the late Mr. Bennett were two elementary school teachers of mine who found a way to foster the imagination and creativity of a young boy who wouldn’t sit still and was always up to something.

Hal Denton in middle school unearthed and then fostered my love for the written word and in particular my own writing.

When I was in high school Jack Sallee and Jean Jones continued to fuel my passion for history, reading, writing, and organizational thinking.

And even in college, Dr. Albert Wilhelm fueled my fervor for literature, for reading, and for using written words to express ideas.

The man I am today is an amalgamation of the ideas, lessons, and practices that the teachers in my life fostered within me all those years ago.

Now I have a son in special education. He doesn’t just have a teacher; he has a team.

He has a team of teachers, classroom assistants, therapists, and other service providers.

Or as we like to call them, Team JA. Over the years, they have become like family.

Are they perfect? No.

But neither am I.

Do we sometimes disagree with his team on things concerning our child? Yes.

Do Becky and I sometimes disagree on things concerning our child? Yes.

Do they have our son’s best interests at heart? Absolutely.

Do they pour themselves into our son every day? Absolutely.

Do they genuinely care for my son? Absolutely.

A lot of special needs parents feel like IEP is a four-letter word. And I’m truly sorry for those of you who have had or feel you have had bad experiences.

By the way dads, if you have the ability to get off work and go to your child’s IEP meeting, but you choose not to go, you just forfeited your right to ever complain.

I want you to stop and think about this for a moment with me. These people made a CHOICE to go into special education. They work in an imperfect system with limited resources to go around. They spend their days tending to our special needs children. Not just one or two kids- but an entire room full of kids all with individualized needs.

Imagine your child.

Now imagine a room full of your child.

Now imagine a room full of your child…for 7 hours a day, five days a week.

Then they go home, take care of their own families, and try to find some sense of balance with their own life and the needs of their families.

They deserve honor, respect, grace, and our thanks for what they have chosen to do with their lives. I think they are heroes.

I have a fairly high opinion of my own abilities, and I know I couldn’t and wouldn’t do what they do for any amount of money. And I certainly wouldn’t do it for the pittance they get paid.

I’m so thankful for our local special education department. In fact, I’m so grateful that I decided Rising Above Ministries would adopt our county’s entire special education department.

So I guess now they really are family.

This is Teacher Appreciation Week.

You know how there are days when you could really benefit from a little encouragement and affirmation yourself?

Go out of your way this week to thank the educators in your child’s life and express gratitude for all that they do for your child. Speak an encouraging word or take them a little gift.

They are a blessing. Now it’s our turn to bless them back.

The Fig Tree

Photo Credit crosswalk.com

Photo Credit crosswalk.com

 

He was shuffling around in the parking lot as I pulled into the office early one morning this week.

Before I had even got out of the car, he had wandered over and was standing by my car, obviously waiting for me to get out.

I nodded to him and said hello as I headed to our office’s front door. He followed me curiously and noticed our name on the door. He asked me “What is Rising Above Ministries?”

I invited him to join me inside where he explained he was waiting for the office next door to open for business. I briefly described who we are and what we do for the special needs community.

I was in a hurry to get started on my tasks for the day, but he was a talkative older man, and so I listened politely.

Over the next five or ten minutes as we talked, he mentioned that he had an adult son with special needs himself.

Only he didn’t use the words “special needs.”

He called his own son retarded. In fact, he used the word retarded 5-6 times in the brief few moments he was in my office.

Over and over, the word rolled off his tongue.

My blood pressure went up twenty points every time the word came out of his mouth.

He even shared with me a story where his own son was struggling to do a task, and he told his son to give up, saying, “You can’t do it because you’re retarded.”

Just as I was beginning to consider a Jedi mind trick to try to blow up him up right in front of me, the Holy Spirit calmed me down.

He was an older man, and in his generation, the word was commonly used and socially acceptable those many years ago.

For those reasons, I decided this time I would give grace.

But all week long now, I can’t stop thinking about that poor son. Having you own dad tell you to give up because you are retarded. Telling you that you cannot do something because “you’re retarded.”

Your words that you speak over your child or about your child have the power of life and death. I am constantly, with every opportunity I have, speaking positive words of affirmation and life over my son. I am always telling him how proud I am to be his dad and how honored I am that God chose him to be my son.

And we have a rule to never speak negatively about him to others either. I constantly tell him how much I love him the way he is and I wouldn’t wish for any other boy but him.

There’s an interesting passage in scripture. In the Book of Matthew chapter 21, verses 18-20 Jesus has a weird encounter with a fig tree.

“Now in the morning, as He returned to the city, He was hungry. And seeing a fig tree by the road, He came to it and found nothing on it but leaves, and said to it, “Let no fruit grow on you ever again.” Immediately the fig tree withered away.”

And when the disciples saw it, they marveled, saying, “How did the fig tree wither away so soon?”

Jesus spoke death over the fig tree and it never bore fruit again. The tree simply withered and died. His words had the power of life and death.

So do your words.

Your child with special needs is your fig tree. Every time you pass by or encounter your child, you need to speak words of life, love, and affirmation over your child or children.

Your spouse is a fig tree. Every time you pass by your spouse is an opportunity to speak life into your spouse as well.

Water the trees in your life. Nourish your trees in your life. Speak life over your trees.

Your words will be the difference between life and death.

My Letter to Autism

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Dear Autism,

I’ve been meaning to write to you for quite some time but thanks to you, I’ve been pretty busy as you can imagine.

Today is World Autism Awareness Day so it seemed a good time to finally write this letter. Of course as the parent of a son with autism, every day is autism awareness day in our house.

Over the years I have cursed at you, yelled at you, cried at you, and tried my best to understand you. The more I have learned about you, the more I realize how little I know about you.

But there is one thing I haven’t done.

I have never stopped to thank you.

That’s right. I need to stop and thank you for a few things today especially since this is your big day.

You probably don’t get a lot of thank you notes mixed in with all your hate mail; so let me try to explain why I’m writing.

You see you robbed my son of his speech. Because of you he is non-verbal and has no language.

But when you robbed my son of his speech, God decided to give him a voice and a platform.

He may not speak, but God used his life to inspire, bless, and teach others around him. He inspired my wife and I so much we started a special needs ministry and now we are helping encourage other families like ours on the same journey.

Hey Autism, do you remember that cave you tried to lure us and other autistic families into for the rest of their lives? You know, the isolated dreary cave where you want all autistic families to live in without hope?

We tried it. It just wasn’t for us. So now we do search and rescue, returning to the cave over and over to show others the way out of the cave and to a better place.

Autism, there are so many other things you’ve robbed us from for which I need to thank you.

You’ve robbed me from my own pride, selfishness, and greed.

You’ve robbed me from my tendency to put my work above my family.

You’ve robbed me from living for myself instead of in service to others.

You’ve robbed me of only caring about those who are just like me.

You’ve robbed me of believing there are some struggles just too big for us.

You’ve robbed me of never finding out what God’s plan and purpose is for my life.

I know you don’t like to talk about God much since you know what he plans to do to you someday. Ever read Revelation? But I do need to talk about Him for a minute.

He made a couple of promises in a book he wrote. He promised to take what was intended to harm us, and use it for good. Then he promised to make all things work together for good to accomplish his purposes.

I don’t know that I ever fully believed him until we met you and you came into our lives.

Speaking of coming into my life, I have met some amazing people because of our common association with you. Therapists, teachers, assistants, service providers—dedicated and passionate people who have crossed our path and have become part of our story—people I never might have met if it weren't for you. Thanks to you I've also met some amazing parents raising their own heroes with autism, who inspire and encourage me.

What you don’t know Autism is that God didn’t take away the struggles, the pain, the challenges- he just simply used them in ways I never dreamed or you never expected.

He has used them to teach me unconditional love

He has used them to teach me the essence of grace.

He has used them to teach me to find joy in all things.

He has used them to show me how to be content in the little things.

Really you can say he has simply used them to draw me closer to him, help me understand him, and make me stronger through him.

In trying to destroy us, all you did was prepare a stage for God to show his glory.

You really helped me take my relationship with God to a much higher and deeper level; so thank you so much! I’m so grateful! Now I rely and lean on him now more than ever.

I also want to thank you for drawing my wife and I closer together in our relationship. We have learned to cry together, laugh together, grief together, and stand strong together because of you.

So you see Autism, I have quite a bit of gratitude for you. Of all the things I’ve said to you and about you, I’ve never thanked you.

Who knew that out of my seeds of hate for you, could grow such love for my son!

I know you will keep trying to harm us and other families. That’s just who you are and your style.

And my God will continue to redeem all of your evil and harm for his glory. That’s just who he is and his style.

So consider this my thanks to you. But let’s be clear just so you know, I still loathe and despise you with everything in me.

Regards,

Jeff Davidson

 

The 43 Hour Vacation

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Photo credit gatlingburg.qsmvrq.com

“I think I will move to Australia.”

So says the young boy Alexander in Judith Viorst’s award winning children’s book, “Alexander and the Terrible, Horrible, No Good, Very Bad Day.” That was one of my personal favorite books as a child. Now here I was, sitting on the edge of the bed at 2:16am tempted to check the flight schedules to Sydney myself.

Five years had passed since the last time we had attempted to take a family trip together. That one ended with me in a coma.

Those were the “good ole’ days compared to this family vacation.

With Jon Alex’s profound special needs, coupled with his autistic demand for routine and structure, we knew it would be a challenge to slip off for a few days together. However the cabin was free, the drive less than three hours, and the timing seemed right, so we went for it.

Out of concern for overflowing bathtubs onto the hardwood floors, the cabin owners had made sure there was no way to stop up the tub for a bath. Baths just happen to be our son’s favorite activity and part of his nightly routine. So baths were out for the duration of the trip.

There was no chair safe enough to leave him unattended, so he was forced to stay in in his wheelchair for a great portion of the time in the cabin. The television set was mounted up high which, when coupled with his vision issues, prevented him from watching his favorite videos. So quite simply there was nothing for him to do, and his routine was getting out of sorts by the minute.

During the cold war, the United States used a scale called DEFCON to determine our state of alertness. DEFCON 5 meant we were at peace while DEFCON 1 meant nuclear war was imminent.

At 4pm that first day, I took our family’s status to Defcon 3.

Jon Alex’s mobility issues put a severe limit on what he could physically do outside of the cabin environment. So going into town to find things to entertain him with was not really a viable option either.

Meanwhile tensions were escalating rapidly inside the cabin. Our conversations were getting terse, our words sharp, and our tempers brief. Bedtime came and brought a new round of problems. The cabin only had one bedroom on the main level. With Jon Alex’s cerebral palsy and my handicapped feet, we would have to find a way for all of us to sleep on the main level.

We decided to blow up a double high air mattress to put on the floor for Jon Alex to prevent him from rolling off of a regular bed in the night. Despite being non-verbal, Jon Alex expressed his delight with the arrangements by turning the air mattress into his own personal trampoline. He bounced and he bounced, and he bounced.

Did I mention he bounced?  Not for a minute, not for a moment, not for an hour- but for the whole night!!He would not go to sleep.

The air mattress would lose air from all the bouncing, and he would sink towards the floor. We would have to lift him up and re-inflate the mattress over and over. Here we were now at 2:16am, everyone wide-awake, yet utterly exhausted.

As Alexander had said, “It had been a terrible, horrible, no good, very bad day.” I took our family’s status to DEFCON 2, and downloaded a Visit Australia app for my smartphone.

The sun came up on Day 2 of our unfortunate incarceration.

The second day was a repeat of the first day in many ways. Tensions escalated at an alarming rate. We were beyond tired, bored, and the thought of staying there the rest of the week was unbearable. Becky and I began throwing out trial balloons to each other about ending the vacation earlier than we had planned and just returning home. I was secretly looking at the Qantas Airlines flight schedule.

Once again we put the air mattress down after once again forgoing the nightly bath. And once again, Jon Alex was thrilled to have his indoor trampoline back. No sleep for anyone the entire night, yet again.

I channeled Barry Corbin as General Beringer in the movie “War Games” as he said, “Flush the bombers, get the subs in launch mode, we’re at DEFCON 1.”

At 10pm we decided to leave the following afternoon and return home.

At midnight we decided to move up our departure time to noon.

At 2:00am we decided to leave after breakfast.

At 4:00am under the cover of darkness, and pouring rain, we loaded up and made our move. Who needs breakfast anyway?

At 7:45am we pulled into the driveway of home sweet home. Jon Alex soaked in the bathtub with a huge grin on his face, and I crawled under a blanket in my favorite recliner. I clicked my heels as I slipped my shoes off and said, “There’s no place like home.”