You are currently browsing the tag archive for the ‘Autism’ tag.

i-want-to-go-to-church

As he is often prone to do, Coleman woke up extremely early on Friday morning.  I know that the term “early” means different things to different people, but last Friday it meant 4:15 a.m.  I was already up for the day (don’t ask!) when I heard his bedroom door open and the distinctive “thump.. thump.. thump” of his bare feet coming down the stairs.  As we met at the base of the stairs, he signed “cereal,” which, in this case, clearly meant the Strawberry Frosted Mini Wheats that Kim had purchased for him at Reasor’s on Thursday.  When either of us returns home from grocery shopping, Coleman pilfers through all of the bags, taking inventory and making detailed mental notes.  He must have dreamed about Mini Wheats on Thursday night: a pleasant dream in which the healthy grains of the cereal were totally negated by the sugary syrups and artificial dyes that make up the frosting.  There’s no “real strawberry anything” in it.  Trust me.  I read the list of ingredients!

As I filled his bowl with cereal, Coleman picked up his iPad, touched the screen a couple of times, and, using the pleasant, young adult male, synthesized voice of his communication software, stated, “I want to go to church!”  In emphatic reiteration of the point, he patted his hand on his chest a couple of times, the part of his chest where “In His Image” appears on the church t-shirts that he wants to wear ALL the time!  Coleman regularly digs through my computer bag, retrieves my folio of paperwork, rifles through the pages until he finds a bulletin or a sheet of letterhead, and points to the word “church.”

Your attention, please:  Coleman loves to go to church!  “Oh, but Tim, you do realize, don’t you, that we really don’t go to church… we are the church; you see, the Greek word ekklesia means…”  Yeah, yeah, yeah!  Whatever!  You explain all that to Coleman while I keep writing, okay?  Coleman LOVES to go to church.  He loves seeing his sweet friends and the people who so lovingly interact with him, visit with him, and sit with him in the Caring Corner during services.  He thinks about it during the week.  He “talks” about it.  He anticipates it.  He can’t wait to get there.  It means that much to him.

Isn’t that the way it ought to be?

When Coleman was five months old, a neurologist at Vanderbilt University Medical Center in Nashville told us that he thought our son might be deaf, given his unresponsiveness to voices and the fact that he would not “startle” at the sound of loud noises.  Having already received diagnoses of neutropenia and Dubowitz Syndrome that week, we weren’t sure how much more bad news we could take.

The neurologist ordered an ABR (auditory brainstem response) in which electrodes are placed on the scalp to measure brain wave activity in response to the introduction of sound.  Results: Coleman’s hearing was near perfect!  He was just locked in his own little world and would respond (or not) if and when he chose to do so.  While many questions about Coleman’s future remained, hearing loss was removed as a variable in the equation, that is, until just a few months ago.

A word of counsel for you fellow husbands and fathers out there: never underestimate the power and the accuracy of a mother’s intuition.

Kim mentioned to me a few months back that she was afraid that Coleman was experiencing a decreasing ability to hear.  I had absolutely no idea what she was talking about.  How can you tell when a non-verbal child is losing his hearing?  Coleman’s behavior and responses seemed exactly the same as far as my perception was concerned.  He still chuckled when I whistled, and he laughed all over when I did my “insider routine” of rapidly saying, “One, two, three, four… Johnny Bravo… whut, whut, whut… bumpity, bumpity, bump… uhhh, uhhh, uhhh,” followed by a sustained whistle.  (That’s the best description I can offer right now.)  He also responded with appropriate signs or actions when I made requests or asked him questions.

Yet, Kim noticed that Coleman was confusing like-sounding words.  When she would say “bird,”  he would often sign “verb.”  You might be wondering why Coleman would have a sign for that particular part of speech.  It’s actually his sign for the song “Verb: That’s What’s Happenin'” in the Schoolhouse Rock! animated educational series which he watches over and over and over.

Kim went with her hunch and scheduled an appointment at the Scholl Center in Tulsa.  An initial evaluation led to an ABR, the preliminary results of which indicated hearing loss, but of an indeterminate level due to Coleman’s activity during the procedure.  The most accurate assessment could only be made if he were under anesthesia and completely still.  As providence would have it, Coleman’s sedation dentistry procedure was coming up soon since it had been delayed due to the guardianship issue (see “Guardians“).  This allowed time for Meredith (our incredible, favorite audiologist!) to coordinate things with the dentist (Dr. Evan Clothier, another blessing from God) and the surgical center so that she could perform the ABR prior to the dental procedure, thus avoiding additional anesthesia.

The ABR under sedation confirmed an assessment of moderate hearing loss, right in middle of the scale between mild and severe, and a recommendation of hearing aids was made.  Kim and I took Coleman soon afterward to have impressions made for the earmold portion of the behind-the-ear (BTE) devices.  We were very apprehensive about how well Coleman would handle wearing hearing aids.  For many years, he has demonstrated a behavioral habit of pressing his index fingers into his ears, which has nothing to do with the volume of ambient noises.  Rather, it seems to be a comfort measure in which the pressure is soothing to him.

The big test came on Tuesday, December 18, when Kim, Hannah, and I accompanied Coleman to pick up the hearing aids and receive instruction on their use.  Meredith gave us a tutorial on the devices and explained that the volume had been preset and locked based on Coleman’s ABR results.  Then, she and I simultaneously placed the hearing aids in and behind Coleman’s ears, turned them on, and waited on the 10-second delay for them to power up.

The look on Coleman’s face changed immediately when the hearing aids came on.  His expression was one of contemplation and discovery.  After a minute or so, Meredith prompted Kim to ask Coleman who loved him.  This is a question that never fails to draw a response of the only sequential syllabic sounds that Coleman has ever been able to make, “Ma-ma.”  “Coleman, who loves you,” Kim asked.  For the first time in his life, Coleman whispered.  It was almost like a faint breath with his lips moving.  “Ma-ma.”  He instantly processed the fact that he was hearing things much more distinctly than he had been, and he was wading in ever so tentatively, not knowing exactly how his voice would sound.  Laughter and tears were shared around the room.

With only three school days left before the Christmas break, we decided not to send Coleman back to school with the hearing aids; better to let him adjust to them at home over the holidays, rather than risk him ditching them in a trash can, toilet, or some other place that he has been known to deposit his non-favorite things.  I will hold off for now on sharing the initial instances when Coleman stealthily and fluidly popped the hearing aids out as soon as our backs were turned, one time squirreling them away under our bed.  It took us 20 minutes to discover that particular hiding place.

However, since those first few trials and errors, Coleman has adjusted wonderfully to the hearing aids, far beyond our most optimistic expectations.  We’re still not out of the woods yet, but the battle that we feared has not materialized.  He seems to have embraced the ability to hear with greater clarity.  The snugness of the earmolds is apparently satisfying his sensory need for pressure, and he is consistently keeping his fingers away from his ears, reversing a behavior that I had just assumed would always be a part of his “Coleman-ness.”

Yet again, Coleman’s resilience and perseverance have amazed and inspired us.  God keeps blessing him in new and profound ways, and Coleman, in turn, keeps blessing us.

After Kim and the kids returned from a Spring Break trip this year to see family members in the Southeast, she said, “You know, you and Coleman should take a trip sometime, just the two of you.”  I had been quietly thinking the same thing for about two months.  I told Kim that I had been considering a father/son getaway to St. Louis in early May and had identified a weekend when the Cardinals would be playing at home on a Friday night.  “Book it,” she said!

An inaugural “man trip” was long overdue.  Don’t misunderstand.  I, along with Kim and Hannah, have been intimately involved in every aspect of Coleman’s life throughout the entirety of his 19-year journey.  And, in spite of all of the hospitalizations, diagnoses, specialists, therapies, and struggles, there have always been fun activities in which we have been engaged with Coleman as a family: Special Olympics, Dallas Mavericks games, therapeutic horseback riding, family vacations, and an annual pilgrimage to the beach for the last several years.  But, Coleman and I had never taken off on a long-haul, “just us guys” road trip as many fathers and sons do.  While Coleman’s developmental disabilities and autism would definitely have to be calculated into the equation, these realities wouldn’t be permitted to serve as barriers that had the power to hold us hostage at home. 

So, Coleman and I hit the road on the morning of Thursday, May 10.  It’s a 400-mile, 6-hour drive from Tulsa to St. Louis.  Coleman is about the best traveler you could ever hope to have riding shotgun with you.  He never complains about the temperature in the car, the music (or, in our case, the lack thereof), the glare of the sun, the traffic, or the road conditions.  He has never once asked, “How much longer until we get there?”  His only (but rather frequent) request was to sign “hamburger” and “soda” (meaning Dr. Pepper).  He brought that subject up about every 30 or 45 minutes just to make sure that I hadn’t forgotten his favorite meal of choice.  Coleman would periodically reach over and hold my hand for a few miles, but was perfectly content to just take in the scenery and enjoy the ride.  Since Coleman is non-verbal, a friend asked me after the trip if I would talk to Coleman as we traveled.  Good question!  I would occasionally tell him how much I loved him, what a good boy he was, and how proud I was of him; but, mostly we just rode along in refreshing silence.  Oh, right!  “Hamburger” and “soda.”  Got it!  Again! 

We arrived in St. Louis in the middle of the afternoon and got checked in to our hotel downtown, which was right across from the Gateway Arch and just a couple of blocks from Busch Stadium.  We took an evening stroll over to the Arch, and I allowed Coleman the freedom to just wander around the expansive, grassy grounds.  The design, engineering, and beauty of the Arch still fascinates and astounds me; if Coleman was impressed, it wasn’t noticeably evident. 

On Friday morning, we headed to the St. Louis Zoo.  We arrived to find what looked like a mile-long line of yellow school buses.  With the summer break approaching fast, it was apparently one of the last, best chances for end-of-the-school-year field trips.  We shared the zoo that morning with approximately 20,000 (only an estimate!) elementary-age children.  I had brought Coleman’s wheelchair just because he tends to fatigue rather quickly when a lot of walking is involved.  While his AFO braces help greatly with stability and support, covering 90 acres on foot would definitely be too much for him.  It was perfect “zoo weather,” and we took our time, seeing the exhibits at a leisurely pace and occasionally wheeling off into a safe harbor as periodic “storms” of giddy, screaming school kids passed by.  The only animal that really got Coleman’s attention was a giraffe that we encountered in a tall, indoor shelter.  The giraffe was only a few feet away from us, just on the other side of the enclosure’s steel bars.  Coleman caught sight of its feet, then began looking upward to find the rest of it, ultimately craning his neck to get a glimpse of its head about 18 feet in the air.  I would love to know what Coleman was thinking!  After a full three hours at the zoo, we headed to Imo’s for lunch, which lived up to its recommendation for fantastic local pizza.

We walked to Busch Stadium on Friday evening for the Cardinals vs. Braves game.  When I bought the tickets I had no idea that the Cardinals would be retiring Tony La Russa’s number (#10) in a pre-game ceremony.  Bonus!  It was a fitting honor for La Russa, who had managed the Cards for 16 years and led them to two World Series titles, in addition to many other notable achievements.  An incredible group of baseball greats (including Lou Brock, Tom Seaver, Bob Gibson, Dennis Eckersley, Dave Stewart, Mark McGwire, and Joe Torre) was seated with him in front of home plate, and La Russa’s speech was filled with humility and appreciation.  The home crowd also showed a lot of class that night in giving the Braves’ Chipper Jones a standing ovation when he was introduced.  Jones, playing in his farewell season, was similarly cheered before each at bat in recognition of his stellar career. 

While Coleman prefers sports like football and basketball in which the officials blow whistles, he is quite happy in the open-air setting of a baseball park.  He had been to a few Frisco RoughRiders and Tulsa Drillers games, but this was his first visit to a major league ballpark.  We had great seats in the middle tier overlooking third base.  Hotdogs, peanuts, and a couple of Dr. Peppers kept Coleman satisfied, and he was blessed to sit next to a sweet older lady who didn’t seem to mind at all when he occasionally reached out and held her hand.  The Cardinals were ultimately out-dueled by the Braves 9-7 in 12 innings.  We stayed until the last out, let the crowd clear for about 15 minutes, and then made a sleepy walk back to the hotel about midnight.  

Saturday morning gave us the opportunity to sleep in a little late and then meet my college roommate, Charlie Fike, for breakfast at the hotel.  Although Charlie and I have talked by phone periodically over the years, I had not seen him since the day of my wedding to Kim in March of 1988.  Charlie is the kind of friend with whom you can just pick up where you left off, even if it has been several years since your last conversation.  No one can make me laugh like Charlie Fike!  Coleman happily watched movies on his portable DVD player while Charlie and I spent a couple of hours catching up on life, family, and faith.

After that, it was check-out time at the hotel and then an enjoyable drive back to Tulsa. 

Thanks, Coleman!  I couldn’t be prouder of you or more grateful to have shared this “man trip.”  I hope and pray that there will be many more to come.   

His name is Nikita, and he made an indelible impression on my heart.  I don’t have a photograph of him, but I can see his face so clearly in my mind.  

I met Nikita two years ago on my first trip to Ukraine.  Our mission team had already enjoyed a successful week of VBS/Bible Camp in Yasinovataya, and it was Day One of working with a new group of children in Gorlovka.  I was teaching the oldest group of kids, those in their early to mid-teens.  Nikita, a tall, slender young man with dark hair, first caught my attention as we were getting our morning session started by making name tags to wear on lanyards.  Through my translator, Dima, I had asked the children to write their names in Russian and English (with assistance, if needed).  Nikita just fumbled with the materials for several minutes until someone thoughtfully wrote his name for him, slid the name card into the plastic sleeve, clipped it to the lanyard, and placed it around his neck.  It was then that I began to perceive “shades of Coleman” and indications of autism.

When Nikita spoke, his voice was rather loud, he stuttered, and he often blurted things out at unexpected moments.  His hands were in near-constant motion, sometimes just moving about, and at other times intensely focused on some object.  By mid-morning, he had completely dismantled his name tag, shredding both the paper and the plastic sleeve.  We made him another.  After he dispensed with three of them on the first day, we decided that Nikita really didn’t need a name tag.  

I moved Nikita’s chair next to mine at the table and gave him some blank sheets of paper and some markers.  It kept him happily occupied while we had our class discussions.  His kinesthetic activities and self-stimulatory behaviors, however, were in no way indicative of a lack of interest or comprehension of what was going on around him.  He would frequently respond to questions that I asked.  Sometimes Dima would translate Nikita’s answers for me, but I needed no help in understanding when he quickly replied with a repetitive “da” or “nyet.” 

Nikita’s mother had stayed nearby throughout the morning and approached me at the beginning our lunch break.  Through Dima, she expressed concerns that Nikita might be a distraction and wanted assurances that it was alright for him to remain with the others in the class.  That gave me an opportunity to briefly tell her about my son Coleman.  I explained to her that I, too, had an autistic son.  Like Nikita, he had dark hair and dark eyes that danced when he smiled.  Her eyes began to fill with tears, and she gave me a long embrace.  I assured her that I understood, that I had so much respect and admiration for her and the love and care that she provided for her son, and that Nikita would be fine.

Nearly every day that week I sat at the table with Nikita and his mother during lunch.  She lovingly assisted him with his meals, as we still do with Coleman.  One day Nikita was wearing flip-flops that were glaringly much too small for his long feet, the entire length of his heels dragging the ground behind them.  Members of our team expressed concern to Nikita’s mother, along with an offer to provide money for new shoes.  She smiled and explained that the flip-flops were hers, but that Nikita had chosen them that morning before they left their apartment and was insistent on wearing them.  Been there, done that!  You choose your battles carefully with autistic children, and “appearances” soon slide way down the list of things that are worth fretting over.

Nikita and his mother presented me with a box of chocolates on Thursday evening after our closing Family Night presentations and activities.  Nikita gave me a tight hug before they left for their home.  I was hopeful that they would stay connected with the church in Gorlovka in the weeks and months that followed, but apparently they did not.  When a team from our church returned there last year, they were told that Nikita had not been seen again and that no one had an address for them. 

Nikita and his mother have stayed on my mind and heart over the last two years.  I held out hope that they would show up at the church in Gorlovka on Monday morning three weeks ago when our group was starting this year’s VBS, but they didn’t.

Yet, Wednesday of that week provided a brief, but joyful, reunion!  We had taken our class to a park across the street to play a water balloon tossing game that was a huge hit with kids in the heat and humidity of a Ukrainian summer.  That’s when I noticed Nikita and his mother walking toward our group.  I caught sight of them about the same time they saw me.  There were smiles and hugs shared, but only a brief conversation as they explained that they were in a hurry to get to the nearby supermarket to buy a few food items and were pressed for time to reach some scheduled activity.  About 15 minutes later, they walked back by us.  Nikita ran to me, presented me with a chocolate bar, gave me a firm kiss on my cheek, and then quickly caught up with his mother.  No words were exchanged, but it made my day, my week, and my trip!

I hope that I can connect with Nikita and his mother again on a future trip to Gorlovka or through Christian friends who live there.  Coleman has access to so many resources, assistive devices, and a large, loving support network that make his life and circumstances (and ours) so much easier to bear.  We are blessed; I know we are; and it weighs on my heart heavily when I consider how little of those things Nikita and his mother may have.

But, one thing I know.  I know where I will find Nikita in eternity.  I will find him living joyfully and freely in the presence of his Creator, released from limitations, perfected and whole, and occupying a prominent place of honor in the Blessed Order of the Least of These.

On February 19, 1993, Kim and I were blessed with the arrival of our second child, a son, Coleman Bradford Pyles.   Hannah, who was 2 1/2 years-old at the time, was thrilled to welcome a baby brother into our family.  Hannah had already been such an incredible blessing in our lives and had brought us so much joy; having a “matched set”  was almost too good to be true.  We imagined a future with a house filled with the noise, activity, and laughter of the four or five children we hoped to have.

Coleman’s diagnosis with Dubowitz Syndrome at the age of five months and an additional diagnosis of autism a few years later significantly changed our hopes and expectations for the future.  I think that Kim and I both began making the necessary mental adjustments immediately, although I would unfortunately be about a decade and a half behind her in emotionally processing what this meant for him and for our family.  Hannah was a sharp little girl, and it didn’t take her long to realize that her little brother was different from most; she quickly took on roles far beyond her years as a tender guardian and fearless defender of Baby Coleman.    

I’ll spare you the details of the struggles, heartaches, advances, and setbacks of the early years:  more hospitalizations and pneumonias than I can count, trips to NIH, bone marrow aspirations, years of Neupogen injections, Cerebral Palsy Center, Easter Seals Center, orthotics, physical therapy, occupational therapy, speech therapy, and special education.

We have weathered many storms over the years, but, even through the worst of it, there was always plenty for which we could be grateful.  We were a family; as odd and irregular as we were, we were still a family.  While others cannot fully understand our circumstances unless they have walked this particular, peculiar road, we have always been blessed with friends and a church family who were sensitive to Coleman’s needs, as well as to those of our family.

I have watched in amazement for 19 years as Coleman has softened and stolen hearts, broken down barriers, loosened people up (who seriously needed loosening up!), and became a perennial teacher’s pet.  He has trained and entrapped countless people into doing his bidding, whether it was whistling or producing other sound effects for him, quoting movie lines, or supplying him with hamburgers, Dr. Pepper, Skittles, and Lucky Charms. 

Coleman has accomplished all of this without saying a word; “Mama” remains the only word he has ever spoken.  If my “accomplishments per word” ratio were as great as Coleman’s, I would be the recipient of several Nobel and Pulitzer Prizes by now.  I’ve talked a lot

Coleman is the happiest person I know.  His laughter is infectious.  His cleverness and ingenuity are amazing.  His perseverance is inspiring.  He is sweet.  He is gentle.  He is affectionate.  He has overcome the fear of simple things (but extremely terrifying things to him) like hair dryers, vacuum cleaners, electric clippers, escalators, and horses, although he remains very uncomfortable around dogs and cats.  I’m with him on the cats!  

He has been blessed with the best mother and the best big sister God could have ever given him. 

Happy birthday, Coleman!  Your Dad is so proud of you!

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 170 other followers

Archives

June 2017
S M T W T F S
« Dec    
 123
45678910
11121314151617
18192021222324
252627282930