Trail’s End

Winter is coming and the mountain trails Jonathan and I have been traversing are freezing  over. So, this blog marks the end of this season’s blog trail with Jonathan. Writing “Hiking with Jonathan” has been a rewarding experience because I’ve loved reflecting on what I’ve learned from and about Jonathan during our hikes together. I am confident many more hikes are in our future–opportunities for growing in my understanding of Jonathan, for learning to hear his voice more clearly, and for connecting with him on that human level where each person is seen, heard, and valued.

I’ve filmed a short documentary I call “Breaking the Silence” that reveals the importance of listening to others, especially those in the special needs community, and of valuing each person’s need to be heard. Please watch.

Group Hike

It was a perfect day for hiking–almost. We didn’t anticipate the snow on the trail. It made for a slippery climb and a cautious descent. But we all had fun nonetheless with our company of hikers–those game enough for a five and a half mile hike with Jonathan on that fall afternoon . As often happens in Colorado, the weather was warm enough for shirt sleeves even though we trudged through ice and snow. But who noticed? We were all enjoying the company, talking, laughing, and taking in the gorgeous views. There’s nothing quite like nature to lift the spirits and cause the cares of life to dissipate for awhile.

Jonathan seemed happy to be on a hike with friends, although I observed that he was pensive at times as he worked to establish his place within the group. Sometimes he would take lead; other times he drew close to me, always attentive to where I was positioned amid the group. I enjoyed watching him interact with others–and others reach out to him. These were friends who came along as a gesture of caring and support as well as for the fun of hiking as a group.

At the end of the trail, we all shared our thanks for time well spent. Jonathan’s good friend, whom we affectionately call Dr. Graham, offered a fitting thanks to Jonathan for the day: “If you hadn’t invited me, I wouldn’t have come. And I wouldn’t have had all this fun, or exercise, or fellowship, or talking–intellectual conversations. So I’m very pleased. Thank you very much.”

“Welcome!” Jonathan replied as he gestured to his group of hiking friends.

The Invitation

IMG_1090Jonathan is ready for change. Up until now his hikes have been primarily with me, although once he let his sister, Christy, come along and he let Dad fill in a time or two when I was out of town. But mostly it’s just been him and me, Jonathan and Mom, and I’ve enjoyed our quietly shared experiences. Now, however, he’s decided to expand his group of hiking associates. He wants to invite the church on a hike. It’s fall and the leaves are starting to turn from their illustrious oranges and golds to dulling browns. The temperatures are a little cooler. Frost covers the ground and ice laces the horses’ water trough in the early morning. The idea of a fall hike with friends actually sounds fun. We both realize we may not have many more opportunities for hiking this year.

So, last Sunday Jonathan asked if he could invite our congregation to join him for a hike. He told them to meet him at Spruce Mountain, one of his favorite hiking spots. The trail is five and a half miles long with a gradual winding climb up a small heavily treed mountain. Once on top, the views are spectacular. Jonathan and I have taken this hike five or six times and it’s created happy memories. Now he is willing to share the experience with others.

Jonathan’s invitation is short and sweet. He and Dad banter playfully behind the pulpit on the platform. Jonathan starts by making sure Dad gets his title right– Senior Pastor Jonathan. He then says, “Hike, next Saturday.” Dad misses his first word, so Jonathan explains–“walk.” Dad pokes him and asks with whom? . . . “For me,” Jonathan answers. Dad can’t let that slide, “Actually it is for him–he’s a control freak.” Jonathan catches the humor and laughs. Everyone laughs with him. Jonathan is a natural on the platform. He then points to specific people in the crowd that he wants to come along. We all enjoy his humor in the moment. Then, feeling his task is accomplished, he tells Dad he is done and hands him the mic and walks off the stage.

I am reminded of William Glasser’s book, Choice Theory, in which he writes that one of our five basic human needs relates to our personal power. We all need to feel we have some control over our lives and some opportunity to express our desires to others. I think standing on a platform and speaking to a crowd through a microphone somehow satisfies that need for Jonathan. He has the opportunity to share his desire when he invites others in the group to join him on a hike. And then of course, speaking of power, he gets to lead the hike.

Signs

Jonathan likes signs. When he was younger, he collected them. He displayed them all over his bedroom, and those that wouldn’t fit in his room, he stored in the barn. I am not talking about the paper signs found at Home Depot. No, Jonathan collected big metal street signs. Some were almost as tall as he was–stop signs, yield signs, road crossing signs. He even acquired a few road barricades with flashing yellow beacons and a couple of traffic lights.

One time, while we were living in Black Forest, he was out on a stroll by himself (unbeknownst to me, of course). He came across a stop sign, post and all, lying in a ditch beside the road. He was about eleven at the time, not quite five feet tall and slightly built. Nonetheless, he decided to drag the sign, which with its post was taller than he and weighed about 50-60 pounds. As the little guy tugged and pulled his new-found treasure down the dirt road, a police officer pulled alongside. He knew who Jonathan was and where he belonged. And because he didn’t have the heart to discourage Jonathan’s quest, he offered his assistance.

I still remember that day when the police officer pulled up to our house in the woods with a sign balancing precariously as it hung out one window of his patrol car with its pole sticking out the window on the opposite side. Jonathan jumped out of the the front seat smiling gleefully as the officer helped him pull his sign from the car.

“Here’s your little man,” he said to me. I smiled sheepishly, embarrassed that I’d been unaware of Jonathan’s absence and that Jonathan had been caught doing something I was sure was illegal.

The officer assured me that no one would be coming by for that old sign and that Jonathan had done everyone a favor. Then off he drove and into the barn Jonathan’s sign went.

IMG_0916Jonathan’s walls are no longer decorated with signs and traffic lights. And we’ve since cleaned out the barn of his awkward stash. But signs still get his attention. He knows they serve an important purpose. He checks them out as we come across them on our hiking trails. He studies them, and then signals their meaning to me, making sure I understand.

I’m glad Jonathan heeds the signs along the wayIMG_0981 in life. They protect him from unseen dangers. He encourages me to heed them as well. I think he is trying to protect me from harm and to keep me on the right path.

Finding Himself on the Map

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This past weekend Jonathan revealed that he could read a map. Unbeknownst to me, Dad had recently taught him this skill and as we began our hike, Jonathan nonchalantly displayed his new-found ability. He stopped at the trailhead and picked up a paper map, folded it, and stuck it in his pocket. From time to time, he would stop at a trail crossing or a point of interest and pull out his map to show me where we were on the map and then point to where we were going.

I found this map experience a poignant reminder of how Jonathan navigates his life.  After all, maps help us identify where we are presently, and then, show us which path we should take to get where we want to go. Most of us have a pretty good sense of where we are, but getting where we want to go is another matter. We plan, we hope, and sometimes we pray that the path we embark on will be a solid path that leads to a good outcome.

Jonathan knows where he is presently. In fact, he emphatically defends his present coordinates. He is IMG_0314quick to point out–this is my home, my family, my brothers, my sister, my mom, and my dad. He also identifies: my church, my barn, my office, and my Starbucks.

Jonathan also has his constants–what he does the same everyday and every week, what day-programs and activities he participates in, and when he’s going to be home to hang out, work in his office, IMG_0678or watch Sponge Bob Square Pants.

These are his locators. They help him know where he presently is in life and where he belongs. From this location on his map, he plans, he dreams, and he hopes about where he wants to go.

One day he IMG_1016plans to build a big church. He’s even drawn up sketches for expanding the barn for that purpose. He also dreams about having a sports complex where families and friends can play. He wants it to have a gym and outdoor sports fields, scoreboards, parking lots, big lights, and a sign at the entrance with his name on it.

Some day soon, he hopes our church will outgrow its present building. He has picked out a larger one that he thinks we should purchase. Almost weekly, he asks me to drive him over to the building which has a big “For Sale” sign in front. I drop him off by the front door and then wait in the car as he walks around the building praying. Initially, I can hear him say, “Jesus, hope, pray.” Then I watch as he begins his march. He stops periodically to place his hands on the building and to pray. I can read his lips as he repeats those words, “Jesus, hope, pray.”

Jonathan knows where he is today. He knows where he plans, dreams, and hopes to go. I’ll be watching to see what path he’ll take to get there.

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Senior Pastor Jonathan

Senior Pastor Jonathan IMG_0483

“Welcome to Barn Church!” Jonathan says haltingly but with a warm smile as he greets people gathered in our barn.

Jonathan began preparing for this meeting a month earlier when he asked my husband and me to find a date on the calendar for his next Barn Church meeting. Together we looked and settled on a Friday evening in early fall.

A few weeks later, he steps onto the platform to make an announcement during a Sunday church service, inviting friends and family in our congregation to: “Come to the barn this Friday night at seven–dot–dot–“o”–“o” (which is his way of saying 7:00). A-l-l-l-l come. Bring cookies.” Then he and my husband banter back and forth about who should come and what they should bring. And this is where Jonathan really shines. He laughs freely and slaps his hand on the podium as a humorous gesture and somehow he manages to charm the crowd every time. He owns the moment.

And then as if he has an innate sense that tells him he has accomplished his goal, he hands the microphone back to my husband and steps off the platform, confident a crowd will come.

IMG_0519What makes this event so unique is the fact that Jonathan is unable to speak intelligibly. He speaks, but only those who know him well are able to understand what he is saying. Those who come to the Barn Church understand this, yet they come eager to hear from Pastor Jonathan. They come because they love him and want to be supportive. They know Barn Church is his idea and that he wants to be a pastor.

Perhaps, it is because his dad is a pastor and he wants to be like him. Or maybe he feels his own spiritual calling. And then again, it could just be that he wants his life to count, and this is the world he knows best. Whatever the case, Jonathan serves in the role of senior pastor of the Barn Church and he takes his role seriously.

Now the day has arrived and it’s time to write his talk and prepare the barn. He spends the afternoon getting ready. First on his agenda is choosing his topic. Foremost on his mind is the recent shooting that took place on a college campus in Oregon. Jonathan is upset about this tragedy and he wants to talk about it. He wants to tell his Barn Church congregation that these shootings must stop.

When I ask him what he wants to speak about, he responds, “No more shootings!”

I suggest, “How about ‘What Do You Do When Bad Things Happen?'” We agree.

I go to work preparing his flip-chart which is laid out on our kitchen table.        Using IMG_0491big felt-tipped markers, I write out his outline. As I do, he passes by periodically to give his approval and make choices about Scripture verses and big ideas he wants to communicate.

Afterwards, he prepares the barn. Dad pitches in and they set up tables and chairs and wipe the dust that has accumulated since the last barn church meeting. The horses, munching on their hay, periodically look up to watch.

Once the barn is set, Jonathan returns to the kitchen for his flip-chart. He clips it to an easel and carries it out to the barn and sets it up in the front.

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As the time approaches, I can sense Jonathan’s anticipation. He doesn’t seem worried or anxious, just ready. He loves Barn Church. To him it serves a very important function and he is resolute in his pastoral duties.

Finally the hour arrives. After a rain-soaked day, the air feels cool and moist. The IMG_0588cloudy sky is now giving way to darkness. It’s 6:45 pm and people start arriving. They shuffle into the barn, all ages– children, adults, and elderly grandparents. They’re  dressed casually in jeans and tennis shoes, wearing light jackets, twenty-five in all. Some bring snacks to share, caramel apples, popcorn, and brownies and set them next to the steaming hot apple cider already on the food table. Then after helping themselves to a cup of hot cider, they make their way over to the tables to find a seat.

The atmosphere is warm and friendly. Folks greet friends and meet visitors. Once everyone is seated, the meeting begins.

Jonathan reads his title, “What Do You Do When Bad Things Happen?” I interrupt to explain the context for Jonathan’s talk–the recent shootings in Oregon.

IMG_0541Then he starts, carefully sounding out the words on each page of his flip-chart and pointing to them as we quietly read along.

People listen attentively, while horses nicker softly in the background. Jonathan reads from his outline, “What do you do when IMG_0567bad things happen?” He turns to the crowd gesturing the question and points to them one by one, expecting each to answer.

“I pray,” is the response of most.

One blurted out,”I hide,” which struck Jonathan as funny, so he laughed. And so did we.

IMG_0562Then one of the kids asked, “Jonathan, what do you do?”

“Pray,” he responds.

“And then what?”.

Jonathan pauses to think, and then acts out wrestling a bad guy to the ground and putting handcuffs on him. Everyone laughs, and I suggest he get back to his talk.

Jonathan meticulously reads his outline about prayer . . . cast your cares on God, knowing God cares for you; and stay steady in difficult times. He flexes his muscles as he encourages the small crowd to stay steady and strong.

He finishes his sermon with two final admonitions, “Go to church,” and “Stay close to family and friends.”

As he flips the final page of his outline, everyone applauds and offers up a hearty, “Amen!”

Then Jonathan puts his hands together, closes his eyes, and tilts his head toward heaven. IMG_0775And in language we can all understand, he prays, “Jesus, help the people who were hurt by the shooting. Help the people in surgery. Help there be no more shooting. A-a-a-men!”

The crowd sits a moment letting the significance of Jonathan’s prayer settle over them. Then slowly, they get up and make their way to the food table where they stand around eating, talking, and enjoying the shared experience. Jonathan gathers up his easel and flip-chart and carries them up to his office–a room built in the loft of the barn with a nameplate on the door which simply reads, Senior Pastor Jonathan.

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Fire Hydrants and Skinned Knees

There it was, a red fire hydrant in the middle of nowhere. Jonathan and I had decided to hike a portion of the Santa Fe Trail that Sunday afternoon. Along the IMG_0721way, Jonathan spotted a side trail leading up to some red rock cliffs and wanted to take it. Upward we trudged and before long we found a red fire hydrant nestled up against a thicket of scrub oak. Jonathan gasped and plunged ahead until he reached it.

How does this happen? How does Jonathan manage to find unexpected fire hydrants (among his favorite objects) along his way in life? Of course I explained to him that some developer must have high hopes of building in the area some day. Nonetheless, for Jonathan, this was one more spectacular find.

This event reminded me of several years ago when Jonathan communicated to me that he wanted to go to a different school than our neighborhood high school. This surprised me because he had always loved school. When he made this request, I remembered that years earlier I had jotted down information about a special residential school in a different state. I had placed it in a drawer and forgotten about it until that moment when Jonathan started communicating he wanted a change. After digging through the drawer, I found the information and called the school to find out more. Everything the school director told me sounded perfect for Jonathan.

So my husband and I took him to visit the school. At that time Jonathan had developed a fascination with fire hydrants and he had been begging all summer to open one. On the trip there, he kept asking us if the school would have them. Once we arrived, the first things we noticed as we drove onto the school grounds were several big green fire hydrants. We stopped the car, and Jonathan got out and started running around and jumping up and down in his excitement over them. When we met with the school director, Jonathan grabbed her hand and pulled her over to a fire hydrant. She smiled and asked, “Jonathan, do you like fire hydrants?” He squealed, “Yes!” Then she said, “Well, we use our fire hydrants to water our lawns, and we are in need of a man to open them for us.”

Jonathan errupted with excitement–and I cried. He was so happy. God had answered his prayers for fire hydrants. And my husband and I, who had been feeling emotionally torn about the thought of him moving away from home, finally knew he was in the right place.

After spending a few years at the school, Jonathan returned home.

He is older now.

IMG_0290IMG_1139He understands he can’t bring randomly found fire hydrants home with him or open them up to let the water spray at will (although he has recently visited a couple of fire stations where firemen let him hold the firehoses as they spewed their powerful blasts of water). But fire hydrants still get his attention. I think for Jonathan they represent those who can mitigate difficult situations and emergencies, people Jonathan would like most to emulate–along with doctors and pastors.

As we descended down the trail that Sunday afternoon, I found the sandy slope a bit slippery. And wouldn’t you know it, my shoes gave way and I tumbled, scraping my knee pretty badly. (I had hoped my days of scraped knees were long past). But as I rolled around on the ground moaning and holding my knee, Jonathan reached out for my hand and helped me back up.

IMG_0726I was touched by his gentle sympathy to my plight. It may seem a small thing–but it’s those small things that I’m noticing these days. Jonathan’s take away from the hike was his memory of finding the fire hydrant. Mine was discovering once again that Jonathan is a gentleman. And then, of course, there’s a small scar from my scraped knee.

Jonathan Takes Lead

“It’s not fair.” Jonathan says this a lot these days. He has watched his siblings grow up, learn to drive, get their first cars, go off to college, get married, and determine the courses of their lives while he experiences stricter boundaries. We take pains to allow Jonathan to do what he can. But some things he cannot do. He can drive the lawn tractor and the ATV’s, but he can’t drive a car, at least not on the road. (Although his older brother did let him drive on the road a few years ago—an experience Jonathan never lets us forget.) He can’t go away to college, yet he did get to go away to a special residential school for a few years—and we refer to that as his college experience. He probably will never marry. And what is most difficult for him is that he seems to have so little say about the course of his life.

We try to let him make choices when he can—what he wears, how he spends his day (for the most part), what activities he wants to participate in. We even let him hold his own monthly services in our barn where he claims Senior Pastor as his title. But he can’t rewire the barn, or buy scoreboards, or put up signs at will, which are all things he would like very much to do. Nor can he be on the nightly news (although he has managed to do this four or five times now) or invite police and firemen to our home, or send letters to public officials containing our bills, insurance cards, and other personal information. He also can’t drive across the country to comfort victims of shootings or disasters. (He has tried to get someone to drive him to Newtown, Connecticut, so he can comfort and help those involved in the Sandy Hook Shooting that took place a few years ago.) A noble desire, yes; realistic, no. But these are the kinds of things Jonathan wants to do.

His least favorite word is “no.” He longs to hear more “yeses” in his life. And try as we might, we never seem to produce enough of them.

One day last summer, he brought me a note that said: “not fun special need—–upset me.”

He knows . . . and to him “it’s not fair.”

Something else he finds “not fair” is that he rarely gets to lead. As I said, he lays claim to the title of “Senior Pastor” at his barn church meetings. He even signs his name, Senior Pastor Jonathan. Perhaps he wants to be more like his dad. But I also think he wants to lead.

All limitations change, however, when we hike. When we are out on the trail, Jonathan gets to be in charge. So, as we begin our journey, he takes lead. He simply moves out front, and I let him. If I inadvertently get ahead of him, he gently takes my arm to get my attention, points to himself and says, “Leader.” Then I step aside, and as I do, I feel a sense of pride. This is Jonathan, full of purpose and dignity, being who he wants to be. I am discovering that he is capable of leading and that I actually enjoy following him.

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The Trailhead

Every hike has a starting point. Many are marked with signs inscribed with the word, “Trailhead.”

Jonathan’s trailhead, at least the one I am cognizant of, was somewhat rocky at the outset. He came into the world after a long and arduous labor and delivery. From his first breath the attending nurses looked concerned. He had low muscle-tone, which was the reason his delivery was so difficult, and his doctor and nurses weren’t sure what else might be wrong.

By the time we were ready to leave the hospital, his doctor explained to my husband and me that no one knew what challenges Jonathan might face, but what we needed to focus on was not what might be wrong with Jonathan, but on how much was right.

We took him home from the hospital with one aim—to love him. We cared for him the best we knew how, and we prayed he would surpass his doctor’s prognosis. During his first year, Jonathan endured a barrage of tests to find out if there was a diagnosis that would fit his condition. Nothing concrete emerged. He was simply labeled with “pervasive developmental delays.” We were told Jonathan may never walk, or talk, or even grow for that matter. After all, he was only twelve pounds at one year.

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But Jonathan did grow.

And eventually he learned to walk, and even to run.

And now, he hikes—long distances, almost every weekend.

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His trailhead started out rocky. But eventually it lent itself to Jonathan’s uphill stride. He walks without a hitch. His gait is steady and confident. He never seems to have a misstep. He is cautious, but not slow or fearful, at least not as long as his feet are firmly planted on solid ground (but that’s for a later blog).

For now, suffice it to say, Jonathan has gone well beyond some of his doctor’s early predictions. He has traversed farther than some thought possible.

And, about him never learning to talk—he does talk. I am just learning to listen.

Why We Hike

Hiking is defined as walking for a long distance, particularly in the woods or countryside.

Jonathan loves to hike.

He likes the quiet of being out in nature apart from the noises of a bustling household, a crowded car, and talkative people.

He especially wants to escape talkative people.

You see, Jonathan’s biggest challenge is talking. He has other challenges. He was diagnosed with pervasive developmental disorder as a young child and he has experienced learning delays throughout his lifetime. But the challenge he struggles with most is not being able to speak clearly. That is what he wishes he could do like everyone else.

But because he can’t, at least not intelligibly enough for most to understand, he enjoys the quiet of walking.

Every Saturday he lets me know he’s ready for a hike. I know what he is saying. I know him well enough to understand. He wants some time alone with me, time when I’m not distracted with talking to anyone else, time when he won’t have to compete with talkers for my attention, time when I will just be with him.

So, we hike.

I go willingly, almost eagerly these days, because I want to spend this time with him. My life, although full, has a little more room in it now that my other children have launched into their adult lives. Now, I have more time for Jonathan.

Now, he can have more of my undivided attention.

And now I am ready to find out what he is thinking. I want to learn by watching him as he thinks and feels and engages with his environment.

What is he thinking about? What does it feel like to be Jonathan? What makes him happy; what makes him sad; what makes him feel alive? Why does he laugh, cry, or get angry?

In this blog series I hope to find answers to these questions. I will begin with what I know about Jonathan’s story from my perspective, the things I remember from his earliest days. But Jonathan is not a child anymore. He is an adult, a young man. He no longer needs or wants me to define his life. He defines it for himself. I hope to discover more about who he is and what he wants out of life from his perspective.

This is my aim as I hike with Jonathan.

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We live in a fast paced society. Walking slows us down. Robert Sweetgall