And he said to them, "Follow me and I will make you fishers of men." Matthew 4:19

Wednesday, October 27, 2010

1 in 110?* Nope. Not Clayton. He's One in a Million.

In honor of April being Autism Awareness Month....

*(The odds of a child being born with autism today.  It used to be 1 in 10,000....)
*( FURTHER UPDATE AS OF LATEST STATISTICS FROM THE CDC, March 2012:  1 in 88!  And we still don't know the cause, and still don't have a cure.) 

A husband and wife were flying overseas for a long-desired, hard-earned summer vacation.  They were going to go to Italy.  They had planned this for a long time, they had worked hard, and they were ready.  They had each learned basic Italian.  They had studied the Italian Renaissance Masters like Da Vinci, Michelangelo, Botticelli, Raphael, Donatello and Titian.  They had learned the history of the Roman Empire, as well as the various city/states of Sienna, Florence, Venice, and such.  And they were excited to sample the wonderful Italian wines and cuisine from across the country.  It was their dream trip.  They had their Fodor's Guide to Italy in hand, and they were almost there....

As the plane was crossing over into European airspace, however, the pilot came on the intercom and told the passengers that due to unfortunate, severe weather conditions, the plane would not be able to fly to Rome; it was being diverted to Amsterdam, instead.  There would be no later connecting flights.  He apologized, but Holland would be their final destination.

The couple looked at each other in shock.  All of their planning, studying, learning and hope and anticipation had been dashed in a moment that was not their fault.  What were they to do?  Well, they had two choices.

Their first option was to cry, feel sorry for themselves, complain to the powers that be, and stay in a hotel room until it was time to return home.  All of their ideals for their wonderful trip to Italy had been destroyed.  "It's not fair," they could say, and nobody would disagree.

Their other option was to land in Amsterdam, go to the airport gift shop and pick up a guide, a Dutch/English dictionary, and begin to learn all about the Dutch Master artists, such as Rembrandt, Vermeer, the Breugels and such.  They could tour the canals of the "Venice of the North", which is one of Amsterdam's nicknames, enjoy the beauty of the tulips and the windmills, and learn about the culture, foods and beers of Holland.  In other words, they could either be miserable, or make the most of an unfortunate situation that neither had wanted, but had now been given.

Which choice would they make?

I can't remember where I first heard that analogy more than 15 years ago, but it is one I cannot forget.  You see, 18 years ago, our second son Clayton was born.  And for the first year of his life, everything was fine and "normal".  Without getting in to all the pain and heartache we experienced during his early years after that, however, let's just suffice it to say that by the age of four he had been diagnosed with Autism.  All of our hopes and dreams we had had for our son to that point were dashed with that diagnosis.  Our plans for his future had drastically changed, due to no fault of our own.

Intensive "ABA" therapy, one on one training, paying special attention to dietary requirements, and constant attention to helping him learn the basic skills of life took over -- instead of ball games, playing with friends, eating "regular" foods and going to regular classes -- all the things "normal" kids do.

It wasn't easy... and the truth is, it's still not; because we're still not done.  I don't know if we ever will be.  But we have tried to do our best in appreciating our little "Dutch" boy for who he is, not who we had planned on him being.  And who Clayton is, is a very special, funny, talented, eclectic, and loving boy.

His taste for music is as diverse as music itself.  Johnny Cash, Elvis, Queen, Journey, Louis Armstrong, Lady Gaga, Earth Wind & Fire, Michael Jackson.  Do I need to keep going, or do you get the idea.

His taste in movies is primarily "slapstick", as he doesn't understand more verbal humor too well.  But Monty Python and the Three Stooges are some of his favorites.  He can recite endless scenes from either, verbatim.  And he is a whiz with anything electronic, from video games, to Ipods to the computer.  Everything else, however, is secondary to books.

Books are his sanctuary, his constant companion.  He takes one or several everywhere he goes.  He taught himself to read before the age of four, and his favorite place is the library.  We go there every few weeks to get six new books, exchanging the old ones.  It's even inspired me to read more.  He will plop down and be content to read books for hours.  He literally even sleeps with books piled around his bed.  His tastes in literature range from "Sonic the Hedgehog" comicbooks, to Dickens' A Christmas Carol, Melville's Moby Dick, Aesop's Fables, various African Folktales, and numerous Bible Stories.  Once again, I could go on, but I think you get the drift.  His taste is broad.

Fortunately, he is also a boy who loves to fish with Daddy.  From New York's Finger Lakes to North Carolina's Outer Banks, Clayton and I will spend some time together fishing when we can.... It is one activity that I learned we could share, as any father and son would.  He just needs a little more help and encouragement.  But the joy and the thrill of the catch is that much greater when it happens....
Fishing the Point of Buxton.  Catching fish is a matter of saying, "Here fishy, fishy," with Clayton....
Clayton has always loved the beach.  There is something peaceful, calming and entrancing about watching the waves, and he sits in their wash until the tide is ready to carry him away -- or we  tell him to come up the beach some more.  Once, while down in Ocracoke, we drove to the southern tip of the island in late summer.  The water was bathtub warm, and "gin clear".  The sand of Ocracoke is soft and white, and as we sat in a calm pool away from the surf, dozens of small pompano would come and peck at our legs and bodies.  It tickled, and Clayton was thrilled watching the little "nibble fish" swarm around him.  All of us joined him and shared a fun family moment, amazed at these small white, silver-dollar sized fish with no fear.  To this day, the memory of those nibble fish will make him laugh out loud.
Sitting in the surf as the sun gets low on the horizon  .... Entranced.  Susan and I watch him carefully, wondering what is going on in that special brain of his. 

Late summer is when the spot are running, and you can often catch them two at a time.  It's easy fishing.  It fun and exciting.  And almost every cast is productive.  That's the kind of fishing Clayton likes.  Of course, the fact that it is typically a warm, sunny day on the beach with the family probably helps.  But he likes action.  Otherwise, he's content to go back to sitting in the gentle waves and watching them roll in... and perhaps wait for more nibble fish to come tickle him.  And just enjoy being at the beach.  Who can blame him?  Being at the beach is good therapy for everyone.  Life's difficult issues just don't seem so important in contrast...  We all feel small and insignificant when we look at the ocean, and the sky.  And it allows us to marvel, to wonder, and to dream...  
A rare photo of Clayton with open eyes.  Enjoying the end of a perfect day at the beach a few years ago as a family, after fishing and sitting in the rolling waves.  Does it get any better than that?  

On our trips up to Cayuga Lake, Clayton would join us in our activities.  With no electronic games or television allowed for the week, when we all went down to the dock to sunbathe, swim or fish, he would be there with us.  And he absolutely loved going for boat rides.  He would sit next to his mother on the boat, and enjoy the wind in his face and the bumps when the boat would bounce over waves.
Motorboat or rowboat, Clayton loves to go for a ride.  Catching a fish was a bonus.  He's just not crazy about getting it off the hook....  His eyes are almost open for this photo -- something quite rare for him.

Parke, Sheldon and I would go down to the creek near the cottage and turn over rocks and dig up worms.  We'd put them in an old coffee can with some dirt, go back to the cottage, get Clayton and go down to the dock to go fishing.  We'd put a worm on the hook, attach a bobber, cast the rod out, and wait for the bobber to go down.  When it finally did, Clayton would squeal with delight as he reeled the fish in.  But when it came time to getting it off the hook -- well, he'd just as soon let me do it.  The "tactile" feel of a slimy fish was a little too much for him.  He'd touch it with his finger, and we'd praise him for that, but he wanted nothing to do with getting that fishy slime all over his hands.
Clayton doing his little happy dance, when he had brought the fish in.  Now Daddy needed to get it off the hook.
Through the years, as Clayton has grown up, we've exposed him to therapeutic horseback riding, "Challenger" baseball, the Special Olympics with swimming and track & field, and most recently, surfing through the "Surfers Healing" organization.  All of these are terrific organizations that we highly endorse and support.  But the truth is, when family can be involved with him for any of his activities, it's not just good therapy for him, it is for all of us.  We have learned that it is all about inclusion.

Sidenote regarding "Challenger Baseball":  Unlike his brother Parke, Clayton only had an interest in baseball for two or three years.  The Challenger team nearby played on Saturdays, on fields where all the other "normal" kids also played.  It was made up of about 20 kids with various special needs including autism, cerebral palsy, and Downs Syndrome.  The team ranged in age from six to 21.  I helped coach, and pitched to those that did not require a "T" to hit the ball.  The families would come and watch the kids play against each other every week.

But one of my family's favorite memories is when one drizzly day we were short by about 4 or 5 players.  Suddenly, Parke, Sheldon, Susan and her 70-something year old father were all out in the field playing with Clayton, the rest of the kids and me.  Parke later recounted how he noticed numerous other "normal" kids stopped by the field after their games on other diamonds, and sat on our bleachers and watched all of us playing with these special players, and all having a blast.  He said they actually looked jealous of the fun everybody was having.  I remember thinking that there probably aren't too many times in each of those children's lives when others would say they were envious of them.  That moment, alone as a family, made it all worth while.  And it's one more reason why we have such awesome kids, each with a very special heart for special needs -- and not just for their brother.

Every now and then, especially in the Spring when the fishing has first started picking up, I'll take Clayton down the street to fish the lake in the evening.  We grab a couple rods, and walk down together, just father and son.  Clayton and I decided when he was very young, that we need to say "Here fishy, fishy", to attract the fish to our hooks; so that has become part of the conversation we have, while waiting for a fish to bite.  In his way, quite simply and easily, we talk about his day.  Who did he flirt with?  (He is known as the "Big Flirt").  What did he do in P.E.  (Flirt -- and play basketball, kickball, tennis, whatever.)  And did he learn anything?  (No.  Just like my other two kids would say.)  And when a fish finally does strike, the smile comes forth on his face as he reels it in -- and he gives it to me to get off the hook.

One of my favorite stories that amplifies his curious sense of sensibility, is when one spring I took him down to the lake for some fishing.  Clayton caught a nice big crappie and reeled it in.  As always, he refused to touch it, let alone take it off the hook.  I tried and tried to convince him to at least touch it's silvery sides -- with just one finger tip -- and he refused.  I finally turned and knelt down to gently release the fish back to the lake.  While I was still squatting, I felt a smattering of something hitting my back.  I stood and turned around, only to see Clayton getting ready to throw another handful of goose poop he had found on the lake's bank.  In his mind, it was okay to pick that up, but not okay to touch the fish.  I laughed and walked over to him.  We rinsed his hands off in the lake, and then I told him that wasn't good enough.  We had to go home to do a better job.  When I explained to him what he had done, (picking up poop) he laughed.  Of course, he is the boy that once thought that his own feces was a totally acceptable art medium to be spread on the television, computer screen and stair railing... among other places.  Oh, the things a parent of a special child experiences....
Clayton and his crappie....  Little did I know I was about to become crappy, too.  :)
Do I worry about what's going to happen later on in Clayton's life?  Yes.  Sure.  All parents worry about their kids, though.  But what will he truly be capable of?  Will he be able to live independently, and maybe be a librarian?  Will there ever be any kind of cure for autism?  What kind of life will he have -- especially after I'm gone.  All I can do is prepare him and his future as best I can, love him now, and leave it all truly in God's hands.  But for the moments we are fishing, that is all that matters.  That moment.  And for that moment, we are both the same -- just a couple of fishermen, father and son, waiting for the next bite, sharing some time together in a very special way.  And we are content.

"Forrest Gump", with his eyes closed for yet another photo -- but still very happy with the yellow perch he just caught.  Now I just have to get it off the hook.
Now if I could just get him to keep his eyes open for a photo....

Until next time,

Fish on.


Update:  February, 2014.

Clayton has had a busy couple of years since I wrote this a few years ago.  During the Christmas Eve service of 2011, in front of over 800 people, he was one of our church's speakers and read the passage from Genesis 22, where Abraham is asked to sacrifice Isaac.  He blew everyone, including myself, away with his poise and the fact that he had the whole chapter memorized.  For the next year, I heard what an incredible blessing it was to see him speak to the church like that.

Then last year, he gave a credible testimony before the elders and the church so that he could receive communion, as a "communing member" of our church.  Again, he blew everyone away with his biblical knowledge and poise.  And to this day, he is the only person to receive a standing ovation in front of our church, for his testimony.  There wasn't a dry eye in the House.
Clayton being congratulated, as people stood -- and wept -- at such an amazing testimony.  God is great, indeed!
He participated in Surfer's Healing one last time in 2012, and had another wonderful experience.  I encourage anyone to read my blog post about that. A Tribute to Surfer's Healing  But here's a photo from his last time there.  I can't recommend it enough.
The smile says it all.  He's come a long way....
As my own father has suffered a serious decline in his mental health and abilities, it is Clayton who has had a special sensitivity to him.  And they seem to share a special bond now.  And those of us who have learned to handle Clayton's special circumstances, are also able to handle my father's special circumstances better, too.
Clayton and Opa, relaxing poolside at my brother's.  It was a wonderful visit.
And finally, he has become part of an innovative program called Project SEARCH, where young adults on the "spectrum" are taught to work under supervised conditions, in a local hospital.  It is true job training skills, and he has blown away everyone's expectations with what he has accomplished in such a short time.  I look forward to seeing what the future brings, and where he goes next.  No, he may never be independent and on his own the way most may live; but I am far more hopeful and encouraged with the steps and progress he has made in the last few years.  I am so proud of all that he is and does, and continue to be very grateful to all those who have helped him achieve what he has.  He has made all of our lives, special in every way.
Clayton and his constant companion -- his books -- on his way to "work" at the hospital.  He has come so far... and there's still so far to go.  But he continues to be an inspiration to me and so many others.  He is, indeed, a very special young man....
***UPDATE APRIL 1, 2015

Clayton excelled in Project SEARCH last year.  He learned all kinds of important job skills -- in addition to some big life skills, too.  And before we knew it, it was the end of the school year and it was time to graduate.  I could go on and sing the praises of this program for an entire blog post, but it would probably be easier for me to just link you to their website, Project SEARCH, and encourage you to learn more about this great program teaching our special young adults how to be productive members of society.

The day before he graduated, I asked his instructor what he should wear.  She informed me that the other boys would be wearing ties, but that it would be okay if Clayton just wore a nice dress shirt.  At this point, however, I wasn't willing to settle for less....

The boy who had refused to wear 2 shirts layered, had learned to wear a shirt under his scrubs -- because of Project SEARCH.
The boy who hated to wear name tags or stickers on his shirt, had learned to wear a plastic name badge clipped to his scrubs -- because of Project SEARCH.
He had lived 21 years without ever wearing a tie.  He refused to wear one to church -- and even to weddings and funerals had never been willing to do it.  Could this day be different?

I told him that his fellow graduates would be wearing a tie, and asked if he would be willing to put one on, as well....  Well, the photos show the answer to that.  Our boy had truly become a young man in many ways....
Clayton was very proud to wear his bright blue tie on his Graduation Day!  After all, he was now a "Gradulate!", as he called himself.  A graduate to be congratulated!  Ha ha.
 When Clayton received his diploma, he shook hands with the mayor of Portsmouth, and the two of them shared a moment, talking about their favorite book -- the Bible.  It was quite a testimony for all who witnessed it.
Clayton was so proud to receive his diploma, he had to stop and read it before being congratulated by the mayor who was patiently waiting to shake his hand.  It was a touching moment for us all.  And I'm not ashamed to say I was crying much of the day.
The staff that worked with Clayton throughout the year had become like family, and with this -- the inaugural class for Project SEARCH for Hampton Roads, they too, were very emotional that day.  But they had done a tremendous job, and all the graduates were ready for their next step in life.
Clayton with the staff of Project SEARCH.  A great group of people who truly care for their students!
Clayton showing off his diploma with his favorite assistant, Janae.  She still has a special place in his heart -- and I suspect he is in hers, as well....
When the ceremony was over, we had a nice family celebration with his favorite food -- PIZZA!  It was a wonderful day, that gave us great hope.
It must be noted that Clayton wasn't the only one who graduated last year.  His sister graduated from high school and his brother graduated from community college, and all three were ready and prepared to go to the next level.  It was a wonderful and busy summer for us all....

But there still was the question of whether or not he could actually find a job that paid him a decent wage....  Otherwise, what would he do every day?

Well after a couple months of "summer vacation", Clayton had not just one, but two job offers... and both paid more than minimum wage.  We weighed the pros and cons of both, and in the fall, Clayton started working in the warehouse of a local business, doing the skills he had learned through the previous year, and with the help and encouragement of his job coach -- and staff who understood his unique abilities.
Working in a warehouse involves vacuuming, dusting, stocking shelves, emptying trash cans, and cleaning -- among other things.  And his job coach is wonderful at keeping him motivated and working hard.  And Clayton is very proud of the job he does.  She only needs to check in on him occasionally now... He's gotten pretty independent, and only needs some encouragement now and again.
Of course after he worked that first week, he received that wonderful thing that all employees look forward to receiving -- a paycheck!  And so we promptly went to his favorite store in the world, and spent half his paycheck!  Woohoo!!
Clayton showing off his prize after his first week of work.  In the many months since, we have become fairly regular customers of both Barnes and Noble, as well as  Clayton loves his books, and he is very proud of the fact that he can now buy whatever he wants, and how ever many he wants -- with his own money....
So, as we enter Autism Awareness Month, I encourage all of you who know a loved one who is somewhere on the "Spectrum", that there is hope.  And there is a future.  And while I'm not sure that Clayton has found his ultimate career -- he's in a place where just a few years ago, I wasn't sure he'd ever reach.  And so that's the good news.  The goals I now have for him have only gotten higher, because of the growth I've seen in him... because of the love and care he's received from so many.

Do I still hope for a "cure" for autism?  Absolutely!  But I also appreciate all that our very special boy  -- I'm sorry, young MAN -- has accomplished, and how he has grown and continues to grow.
What he has learned, and what he continues to teach us all... is priceless.  Oh, and as you can see by these most recent photos,... he's even learning to open his eyes for photographs... sometimes.......  :)

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