Category Archives: Travel

Hope on a River

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: You don’t give up.”  – Anne Lamott

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Sometimes I think that as much as I have defined my hopes over the years, it is they that have defined me. Hope is the thing that gets us from one day to the next. And those days turn into weeks and months and years, until finally we look back, exhausted but still hopeful, and see where those hopes have taken us.

My hopes have certainly changed over the years, evolving and developing as my son has. I remember hoping when he was six years old and learning to talk that someday we could have a conversation. I remember hoping that someday he would stop screaming and bolting away from me in parking lots or other public areas when a noise startled him. And I remember hoping, as he started talking more and bolting less, that someday I could take him on an international trip with me. That he would be safe, and that he might even enjoy it. Because I love to travel – my whole family does – and someday I wanted to share that with him. It’s a frivolous hope, I know – unimportant, and certainly nowhere near a matter of life or death. And in the grand scheme of things, in all of the hopes that I’ve had and still have for my son, I can assure you that international travel was low on the totem pole. But still, it was there.

Last month, after a year of planning, both of my sons (one with autism, one without) accompanied me to Thailand, where we met up with my father on his annual Thanksgiving in Thailand trip. We had purchased our plane tickets back in February, timing our departure with the school district’s break for the US holiday. What we didn’t know was that our arrival date coincided with the festival of Loi Krathong (pronounced loy krah-tong), a Thai holiday that takes place on the evening of the full moon of the twelfth month in the traditional Thai lunar calendar. In the western calendar this usually falls in November. And this year, it just happened to be on the day that we arrived.

It was night when we flew into Bangkok and checked into our hotel. We slept well and had continental breakfast before heading out for a stroll that morning. Everywhere we walked, people sat outside making and selling krathongs – handle-less baskets traditionally crafted from intricately folded banana leaves and loaded with flowers, incense sticks, candles, and other offerings. They are beautiful in and of themselves, but it’s what they symbolize that really hit home with me. The krathongs are released into waterways across Thailand as offerings of hope – an opportunity to wash away the past year’s misfortunes and let go of resentment or fear, so that one can start fresh, with hope for good fortune in the future. A festival about hope! How wonderful is that?

That night, after a lovely outdoor international banquet at our riverfront hotel, we watched as the locals picked up their krathongs and walked down to the dock when it was dark. There they stood, holding their krathongs in front of them, eyes closed and heads bowed for a moment as they meditated. Then they placed their krathongs in the river and watched them float away. Parents held their children by the hand as they walked to the dock, bent down, and, it appeared, instructed them about what to think of before they released their krathongs into the river. I watched in wonder; I was so moved by this beautiful tradition.

Then it was our turn. The hotel had provided pretty krathongs for its guests, and we each picked one out, lit our candles, and slowly walked to the dock. I thought about all the things I needed to let go of in my life – fear, resentment, stress, sadness. I thought about all the hopes and dreams I have for my children and myself and the fact that at that moment, where we stood there on the dock of a river in Thailand, one of my hopes had come to fruition. We were there; we had made it. I released my krathong, and then I looked out across the river and saw dozens of tiny candle flames floating down it, bobbing along in the water. And I watched as my family’s krathongs floated away together and bobbed along with the rest of them.

The remainder of our trip was just as magical. We had our challenges, of course, as my son (now 16) still has a tendency to wander and has a very limited palate. But overall we were blessed with safe travels and wonderful memories. And hope that continues to evolve.

Our Thanksgiving in Thailand

And…we’re back!

It was the kind of trip that made a day feel like a week because it was so full, everything in it so new. It was the kind of trip that left even the kids with no desire to watch TV in the hotel room at the end of the day. We tried to read and all three of us dozed off within ten minutes.  At 8:00 PM. Of course, that was probably the jetlag, but still. A full trip, indeed.

The boys did great on the planes, all 21 hours’ worth (just to get there). The three of us met my dad in Bangkok. He had been staying in the northern part of Thailand for a week and flew down the day before we arrived. Nigel’s only issue on the plane was not wanting to sit next to any “strangers,” and when it was his turn to do so, he started to have an anxiety attack. This was somewhat unexpected – he is usually so social (yeah, I know – autism and social sounds like an odd co-description, but it happens) that I didn’t think it would be a problem for him, or else I would have prepared him better.  I just didn’t think of it at all. Seeing the writing on the wall as Nigel started to escalate there on the plane, I quickly switched seats with him, much to Aidan’s chagrin. “Don’t give in to him, Mom;” I’ve heard it before.  I tried to explain to Aidan that it was not a good time for a teachable moment.  I always feel that I lose respect in his eyes when I have to do things like that. It comes with the territory, unfortunately.

Lots of things come with the territory when you travel with someone who has special needs, of course. The two that affected us the most were food preferences and wandering. I took a risk embarking on an international trip with a child who wanders, but it was a calculated risk. Nigel has a history of wandering in public places, even fairly recently. I would never have attempted a trip like this in his younger years, or even two years ago. But I felt confident that at this point the risk was manageable. And he did wander once – at the Ayutthaya ruins, the highlight of the trip for him – but I quickly noticed and found him within five minutes. Of course, I was beating myself up the entire five minutes (which felt like twenty), but it was really just my PTSD kicking in. My rational mind knows that he can pretty much hold his own these days.

Enough of the negative stuff! We had clear skies the whole week, and all of our tours went off without a hitch. My dad treated me to no less than three (!) Thai massages, including one on the beach! Aidan’s stomach bothered him a little one night, but other than that, no one got sick. And other than a few mosquito bites, no one was injured. A successful trip on all counts! And without further ado, I give you…the pictures:

Aidan on the plane, right before I switched seats with Nigel.

Nigel on the balcony of our tenth-floor hotel room.

On a khlong boat on the Chao Phraya river, which flows through the middle of Bangkok and most of Thailand.

Along the river sits Buddhist temple Wat Arun, which means “Temple of the Dawn,” with its Khmer-style tower, approximately 80 feet high.

With Dad at the base of Wat Arun, photography by Aidan.

Guardians at Wat Arun

Climbing Wat Arun’s scary-steep stairs!

Aidan (in red shirt) at the bottom stair landing of Wat Arun.

 

Along one of the canals of the Chao Phraya river. Bangkok is nicknamed “Venice of the East.”

The famed Floating Market, where Aidan bought a cool wooden crossbow as a souvenir. Even with my suggestions, Nigel had great difficulty choosing a souvenir, saying, “Everything is so unfamiliar to me.” Finally he settled on a giant, one-inch-diameter pencil, stating that he could use it as a prop in his films. I guess it was the only thing that looked familiar to him! But still, his souvenir from Thailand is a pencil.

Dad purchased a coconut from a floating vendor who cut it right then and there and stuck in the straws for us (that’s the top of the coconut, not a drink umbrella). It doesn’t get much fresher than that!

Even Nigel drank it!

Ah, coconut palms…they were everywhere, and I loved seeing them.

At the Bridge on the River Kwai (about an hour from Bangkok). Nigel did some filming here. Not only did I have to keep my eye on him, I also had to make sure he didn’t set his video camera down anywhere. Can you imagine the meltdown if he’d lost it?

At the Tiger Temple (two hours north of Bangkok).

Nigel with a “real Tigger”!

Some of the many buddhas in Thailand.

Walking around Wat Po, aka Temple of the Reclining Buddha.

Nigel standing guard.

Aidan’s favorite (because of the top hat!)

Mealtimes were interesting! Nigel subsisted on fruit, rice, and the doughnuts served with the hotel’s continental breakfast. Aidan, the pickier eater, dove in and tried pad thai, among other things!

Chakri Mahaprasat Hall at the Grand Palace.

The boys at the Grand Palace.

At the beach at Pattaya – Nigel did not enjoy himself and remained in the beach chair the entire time – two whole hours! Both boys discovered on this trip that they were not fond of humidity.

Exhausted at the end of another full day.

At the ruins of Ayutthaya, the ancient capital of Siam. The boys said it was too hot to smile.

We declined taking the elephant tour around Ayutthaya. If it was too hot for us, we thought it would be too hot for them as well.

More ruins.

Aidan taking a breather.

 

Dad/Grandpa filming the ruins.

Thanksgiving dinner at our favorite restaurant in Bangkok – The Waterfront. Incredible food and ambiance – alfresco, and literally right over the river.

On our way home, we had an eleven-hour layover at LAX – perfect! Nigel and Aidan’s dad came and picked them up and spent the day with them, and one of my sisters came to get me. I freshened up at her apartment and then we went winetasting with our brother! It was such a treat to see both of them, and a wonderful end to the trip. Massages in Thailand and winetasting fresh off the plane – yep, that’s how we roll. I love my family!

The Lowdown, Vol. 4

Sometimes you’ve just got to get outta Dodge. And with the boys happily in L.A. for some time with their dad, that’s just what I did. I took a drive up to the Olympic Peninsula in Washington, jogged over to Rainier National Park (well, not literally), and then visited some friends in Portland on my way there and back. It was a great trip – a little retreat for myself. But when you take a trip alone, you often end up with some pictures that look like this:

And if you’re used to going to National Parks with your kids, you’re going to really miss them when you drive around one all day, and then again that night when you’re in the motel room by yourself. And since you were really looking forward to some time to yourself, it takes you by surprise that you’d rather have them with you instead. But then when you stop to think about it, you’re not that surprised at all. And you’re wishing that they were in this picture, standing on the bridge:

The rainforests are beautiful – lots of moss and ferns and old trees with pretty creeks gurgling by. Lush greenery and gorgeous wildflowers line every road, even the highways. This is what the Pacific Northwest is known for.

 

Next I headed over to the coast. Not being a reader of the books, I unwittingly found myself in Twilight territory. There is a rather large store in Forks, Washington, called Dazzled by Twilight, which I happened to drive by. I glanced at the life-size cardboard cut-outs of the characters lining the sidewalk, smiling as I thought of my sons and their disinterest. (Well, Nigel has disinterest. Aidan has disdain.) Closer to the coast, I saw “Welcome, Twilight Fans!” signs posted on little motels I passed and another souvenir shop devoted to the series. In fact, the photo below was taken a few yards away from the official “Twilight Tours” bus, which a young couple was waiting to board.

The next day, I drove to Mt. Rainier National Park, and at first I had no idea how lucky I was that it was a clear day. I later learned that the majestic mountain is often cloaked in clouds. As I rounded nearly every bend in the road I had to pull over to take a photo, gasping at this fourteener‘s beauty. This picture really doesn’t do it justice.

After my cozy night’s stay at the lodge, I decided to stop at one last waterfall on my way out. Fortunately, there were others there at the same time, and I asked someone to take a photo:

But wait, there’s more for this Lowdown post! Months ago, my friend Jazzygal bestowed the Happy 101 award on me, and I’m finally listing the 10 Things that Make Me Happy. It’s something I always need to be reminded of, but I’m really needing it now, so thanks again, Jazzy!

  1. spending time with Nigel and Aidan – watching movies together at home, reading, playing games
  2. writing novels
  3. enjoying meals with friends
  4. reading an amazing novel
  5. sleeping in
  6. blogging
  7. winetasting
  8. traveling
  9. savoring a piece of chocolate
  10. being home when the boys are, but doing my own thing and just hearing their voices, happy doing their own things – Aidan on his X-Box Live and Nigel scripting the movie he’s watching – makes me so happy.

There you have it. I’m going to opt-out on the tagging this time, but if anyone feels like leaving a comment listing the things that make them happy, all the better! These days, with the boys gone and the stress of a big impending move hanging over me, I need all the happy I can get!

Flying Solo, Part 2

Please wait, an agent will be with you shortly.

Your chat session has started . . .

Micki: Thank you for contacting Economy Air. My name is Micki. How may I assist you today?

Tanya: I have downloaded the unaccompanied minor form for my two children, ages 13 and 15. My question is if the meeting party needs to sign where it says “signature of Party Accepting Custody” when they actually pick up the children, or does it need to be signed by the meeting party beforehand? Thanks.

Micki: 13 and 15 year olds traveling together are not considered unaccompanied minors. The 15 year old is considered an adult.

Tanya: My 15-year-old has autism, and their father still needs to go directly to the gate to pick them up.

Micki: [no response]

Tanya: He’ll be fine on the plane, but we don’t want him going through the airport unaccompanied.

Micki: That is fine. We will document the itinerary so that it’s understood by the agents. All the father needs to do is show his identification at the ticket counter and they will issue him a gate pass to meet the flight.

Those who happened to catch my post a few days ago know what transpired with the December 25th travel plans, and why the flight had to be scheduled that day. But since we had no way of knowing that it would be canceled, the boys were prepped for their first solo flight (!). We practiced lifting up their luggage to put it in the overhead bins. We talked about being patient while waiting to de-plane and not making comments about how people should “just move.” We talked about what to do if for some reason their father wasn’t at the gate when they landed. We went over what topics are not okay to talk about with airport security. Special needs were noted with the airline agent in an online chat that could be printed out for verification. Not surprisingly, there were many preparations for this huge milestone.

And although they ended up not flying that day, we still planned to have them return to Oregon by plane.  I got up that morning and prayed for a fogless arrival time, so that the boys’ plane could land safely. Their father called to let me know as soon as they boarded in LA. He sounded so proud, describing how he watched the boys get on the plane, and how they waited patiently for an elderly woman in front of them.

When the time came, I drove to our little airport to pick them up. The sky looked good, but as I neared the terminal, my body started gasping involuntarily. It wasn’t a panic attack, which I’ve had in the past. No, it was just a mom, overcome with emotion. I couldn’t help it. Nigel was doing something I never thought he’d be able to do! He has come so far, and he never ceases to amaze me.

I parked the car and pulled myself together. I went to the counter to request a gate pass. They hemmed and hawed a bit at first (I wanted to say, So what if they’re teenagers? They are my children, autistic or not, and I have every right to meet them at the gate!), but all I had to do was drop the A-word, and then they were accommodating. The flight was only a few minutes late, and I waited anxiously at the gate.

I was afraid that I would start crying again with their arrival, but as soon as I saw them, my face broke into a huge grin! Aidan ran past me, looking unwell. “Mom, I’m sick. I’m going to the bathroom,” he said as he handed me his luggage and took off. “What’s wrong?” I called after him, but he hurried away. I hugged Nigel and asked him what was wrong with Aidan. He said he didn’t know, and we walked over to the side to wait for him. Nigel said that the flight was fine, and then he proceeded to tell me about how, at the movie theater the night before, he threw up twice during the 3-D showing of Avatar. “That 3-D was too good, I guess!” he said with a chuckle. “I’m sorry that happened, honey,” I said. He told me that all the 3-D aerial scenes made him dizzy and sick. I hadn’t even thought of that as a movie-related sensory issue. If it’s not one thing, it’s another!

Aidan returned then, explaining that he’d felt a little airsick when they started descending, and then the stuffiness of the cabin and having so many people around him while waiting to de-plane just got to him. “At least I didn’t throw up in the plane,” he said. Yes, at least. Oh, my poor SPD boys! I felt so bad that they had both been sick, especially when I’d hoped that they would enjoy the movie, and later, take pride in their autonomy on the flight. But my concern took a back seat to my overall relief and exhilaration. They did it! Their first solo flight! After many years of effort in dealing with their challenges, it’s so validating to just let them fly.

Christmas in an Airport

The hardest part of waiting is not knowing how long you’ll have to wait. – Aidan, age 13

Come on, say it with me: “I will never spend Christmas in an airport.” That’s what I’d said all of my adult life and certainly believed that I never would. Then, after eight years of transporting my children 700 miles back and forth to LA to visit their father and dealing with harsh – and scary – winter driving conditions, we decided to take advantage of a new economy airline that offered non-stop flights to LAX from our little airport in Medford, Oregon. The boys were excited about their first solo flight, Nigel had been prepped about not loudly saying things like “Can’t these people just start moving?!” while waiting to de-plane, and not mentioning 9/11 to airport security, and I was thrilled at the prospect of avoiding the 700-mile drive during winter.  The only catch was that the economy airline only flew on Fridays and Mondays. The ticket cost for the Monday after Christmas was, for some reason, $100 higher (for each person) than for the flight on Christmas Day. At a little airport serviced by only four airlines, I thought, how bad could it be?

We sat there for six hours, dear reader, waiting for the fog to clear. We got there at 11:30 AM, an hour and a half before take-off, and did not leave that airport until 5:30 PM, when they finally announced that the flight had been canceled. The really maddening thing was that the three other airlines were all landing and taking off just fine, but the economy airline had stricter regulations than the other airlines. The officials kept telling us that “they’re circling,” “the pilot is waiting to attempt a landing,” and so on. For six hours. Six hours of watching other planes land, board new passengers, and take off. Six hours of crying toddlers (Nigel covered his ears a lot), monotonous recorded airport announcements about not leaving bags unattended and using hand sanitizers “during cold and flu season,” and even a boisterous youth minister who took it upon himself to try to engage everyone and loudly started singing Christmas carols right behind my head. And Nigel’s. Nigel actually handled it better than I did.

The next morning we trundled back to the airport. The fog was worse than the day before. When we stepped up to the counter we were told that they had already delayed the flight, and there was no guarantee that the fog would clear by the delayed time either. The forecast was for fog all day. We couldn’t spend another day in the airport, not even knowing how long we’d have to wait, or if they would even fly at all. We walked back to the car and I called their dad. We decided to drive and meet half-way, as we’ve done several times a year for eight years. Eleven hours in the car. No one, especially Nigel, was happy about it, but we braced ourselves and got on the road.

Of course, the day after Christmas is the worst day to drive. I-5 was two long streams of cars, northbound and southbound. Three hours into the drive, a minivan nearly merged into me. I braked, swerved to avoid it, and felt sick as fear and adrenaline coursed through me. We were inches away from being in the middle of a pile-up at 75 miles per hour. It was so hard to keep it together until the next off-ramp, where we stopped to refuel and get lunch. I sat in the restaurant calming myself, recuperating, relieved and grateful, trying to put the what-ifs out of my mind. We are truly, utterly blessed.

I called my mom, who lives near the airport, and she said that they were still socked in with fog, three hours after the boys were supposed to fly. She’d heard no planes coming or going. The thought that we would still be sitting in that airport for the second day in a row spurred me on. I felt much better knowing that we had done the right thing by driving. After we got back on the freeway, I saw a sign that made me want to joke with the boys. It was one of those green and white official highway mileage signs, and it read,  Sacramento 17, Los Angeles 391.

“Look, guys!” I said. “Only 391 more miles to LA!”

Aidan, seated next to me, did not skip a beat. “Yay! We’re almost there!”

Even Nigel chuckled in the back. “Yeah.” A year ago, he was just learning to recognize the humor in sarcasm. I think he’s got it now.

And at least, as I told Aidan, with driving they know how long they have to wait. They know exactly how many hours it takes to get from our house to Dad’s house (eleven, including a quick stop for lunch). They see the familiar landmarks along the way, they recognize the various gas stations we use. After eight years, they know every bend in the road, all 700 miles of it. And the best part of waiting, I tell them, is knowing who’s waiting for you when you get there.

The Roof of the World

Ed. note: I’m sure by now you’re all tired of hearing about my trip to Nepal, and thinking if-I-love-it-so-much-why-don’t-I-marry-it, but bear with me, please! I’ve got one more story to share.

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I am in one of the most incredible places on earth. The Knowledge for People team is taking a break from our intensive work with AutismCare Nepal in Kathmandu to take an overnight trip to Nagarkot, a mountain village two hours to the north. People flock here in trekking season to see the sunrise over the Himalayas, including Everest (which is called Sagarmatha in Nepal). Now it is monsoon season, so the big mountains are cloaked in clouds. We cannot see them at all, and we are told that we probably won’t be able to while we’re here. But from our hotel, we can still see the area below them, a lush green valley dotted by homes and etched with rice terraces.

Following our late afternoon arrival, some of us meet in the lobby area for drinks. We sit on a balcony overlooking the valley, and we order cocktails and crunchy, savory pekoda, a fried Nepalese hors d’oeuvre made with ground garbonzo beans and shredded vegetables. It’s my favorite Nepalese food, and I eat it nearly every day of the trip. After a while, it begins to rain lightly and then something appears that I never would have dreamed I’d see. It’s the most picturesque rainbow of my life, right over the beautiful Himalayan valley below us. We gasp – the entire scene is stunning, and we cannot believe our good fortune. We may not be able to see the Himalayas, but we know they are there, and this gorgeous rainbow, shared with some wonderful new friends, is enough.

Those who’ve known me for a while know that I’ve always loved mountains. At heart, I consider myself a “beach person,” but I love traveling to view mountains and often climb them. Last summer, my sister and I climbed Mt. Shasta, a fourteener in California, and last September, Nigel and I climbed ten-and-a-half-thousand-foot Mt. Lassen. But my love for Nepal and the Himalayas goes back thirty years. Last year, I wrote about how as a child I would sit and read my parents’ 25-volume Encyclopaedia Britannica set, learning many things. The year that I was eight, I learned about autism and I learned about Nepal. From that young age I knew that I wanted to travel to Nepal someday, but never at any point could I have foreseen that these two things I had first learned about so long ago would manifest themselves together in this wondrous experience. Who would have thought? Yet here I am, thirty years later, traveling to Nepal to teach about autism.

Back at the hotel, I have made it eight days remembering not to rinse my toothbrush in tap water. Tonight, thinking about the Himalayas, I finish brushing my teeth and immediately stick it under the faucet to rinse it. I realize right away what I have done and throw the toothbrush in the trash. I’ll get a new one back in Kathmandu tomorrow afternoon. While I sleep, I dream of seeing the elusive Himalayas with the sunrise, although in my dream we had to hike a mile to get to a point where we could see them.

I wake shortly after 5:30 and bolt out of bed. The clouds have dissipated slightly and I can see the lower parts of the mountains! Not much, but at least it’s something, in addition to the glimpse from the plane. I wash up, dress, and visit with my friends. The cloud cover is blocking the solar eclipse that is going on (yes, I was in Nepal for the 2009 eclipse!), but we definitely notice the sky darken slightly as it happens. Afterward, I go downstairs to have my massage (my first one in years!), and then come back to the room to shower.

I meet up with Dori, the speech therapist on the team, and we go have breakfast in the hotel restaurant. We sit outdoors because – wonder of wonders – the clouds have cleared! We can see the majestic Himalayas! We can stare at them while we eat breakfast! My thirty years of wanting to see the Himalayas with my own eyes has come to fruition. While waiting for my food, I walk over to a diagram placed on a wooden sign showing the names of each of the Himalayan peaks from that viewpoint. I find Everest on the diagram and squint to try to find it in the mountain range laid out before me.  I find where it is supposed to be, having determined the mountains on either side of it. And then I see what I believe to be its base, but I can’t see the top. And that’s okay. This dazzling display is more than I had hoped for during this off-season trip, and I am sated. Moments later, the clouds roll in again, and we can no longer see the mountains or even the valley.

Besides, I have to save something for next time.

the base of Mt. Everest is right in the middle of this photo

*For more fantastic pics and Nikki’s description of our time in Nagarkot, click here. 

Pillars of Hope

As some reading this post already know, I recently returned from a trip to Nepal. I was part of a team of therapists and teachers from Knowledge for People, a non-profit organization that helps with autism education and outreach in developing countries. We spent two weeks in this beautiful, diverse country, working with wonderful people. It was simply an incredible experience overall, but nothing could have prepared me for the emotional impact it had on me at the end.

We spent the first few days getting over our jetlag, doing a bit of sightseeing, and acclimating to the culture. Then we worked directly with 28 families in individual sessions (which I described in this previous post). With the help of translators, we taught them the basics of PECS (Picture Exchange Communication System), ABA (Applied Behavior Analysis) therapy, and sensory integration. The parents were so appreciative, and we could see the children benefitting from just the couple of hours they spent with us. Many were nonverbal, and some of them took to PECS right away, which was so exciting to see and experience.

The parents we met and worked with are truly dedicated to their children and doing all they can to help them. Both mothers and fathers are heavily involved, and in many cases, so is the extended family. We worked with grandparents, aunts and uncles, and older siblings. It was so positive to see such dedication in a country that has little information about autism available. They try so hard, and I could see the worry and exhaustion on their faces. But I could also see the love. It was there every minute.

At the end of the week of individual sessions came the two-day presentation workshop. Sixty to seventy people filled the festive, tented area that was set up in the courtyard of the small center called AutismCare Nepal. Chairs were rented, banners were posted, lunch was catered. It was definitely a big event. Many of the parents and extended families we’d worked with attended, but so did teachers, reporters, pediatricians, and other doctors. We were thrilled with the turnout, even given the fact that Kathmandu’s public transportation system was on strike that weekend.

We prepared presentations on the following topics: general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Before the presentations began, we met with our translators to go over the material and see if they had any questions. I sat down with my translator, a doctor whom I’d already met a few days before when we had the individual session with her family – her husband, their three-year-old son, and his grandmother. She looked over the outline of my presentation about my experience with my now-14-year-old son, from the early days of being nonverbal and having agonizing sensory issues to slowly, painstakingly learning to talk and cope with sensory integration. I mentioned the difficulties we had later with mainstreaming, how he was so tortured by bullying. My voice broke as I talked with her, and we cried together as she told me that she has the same fears for her son. I was awed by the depth of feeling I could share with someone living on the other side of the world.

Moments later, we composed ourselves and went out to the presentation area. Fortunately we were not the first to speak that day. But when the time did come, and we stood in front of all the parents, teachers, doctors, and other attendees, we weren’t the only emotional ones. After I introduced myself and talked about my experience with my son, pausing often for translation, I said this to them:

We live far away; our lives, jobs, and cultures are very different. But we have one thing in common – our children. No matter where we live, we understand that part of each other’s lives. In the United States we like to say, ‘It takes a village to raise a child,’ meaning that many people are involved in caring for a child and teaching him or her. When a child has autism, that statement is doubly true. It takes more than a village. That is why we are here, from another country, to talk about our experiences and strategies that have worked for our children. Having a child with autism is a tremendous challenge, the biggest of my life. You have other challenges in your life that I do not understand. But in this challenge – autism – we are connected. You are not alone.”

I talked to them for a while, feeling the bond grow deeper with each word that my equally emotional translator conveyed to them. At the end of the day, those who could speak some English came up to me to thank me personally. I was so moved by their gratitude, and their love.

On one of the nights during the week, we had dinner at the lovely home of the parent-founders of the center. In Kathmandu, it is common to see homes with rebar cable sticking up out of the top, as pictured below. Embedded in the foundation, the cables provide the structure for the pillars of each floor of the home. Often, the owners stop building at two floors, but the rebar cables still stick up from the roof, exposed, in case they are able to build another floor in the future. “We call them pillars of hope,” Hem, the father, said with a smile.

I’d like to think of the work that we did in Nepal as a pillar of hope. “You are not only helping our families, you are helping our country,” Hem also said. We weren’t able to be there long enough to build a new floor, but the hope is definitely there.

The Reason

Now we get to the heart of the matter – the reason the Knowledge for People team came to Nepal. We have taken some time to get over our jetlag, do some sightseeing, and acclimate a little. Now it’s time to work. And I have come to realize that, apart from raising my children, it is the most fulfilling work of my life.

AutismCare Nepal is a small, new, parent-founded center in Kathmandu. It is also entirely parent-funded. Most of the parents had to go to Delhi, India, to receive a diagnosis for their children and therapy/treatment suggestions. Imagine having to go to a different country for a diagnosis. They had absolutely no resources for autism families in Nepal. AutismCare Nepal is the first step to rectifying that.

Zahida, Tanya, Ann-Marie, Nikki, Dori

And that sort of makes the Knowledge for People team the second step. Our team is comprised of Nikki (the director), Dori (speech therapist), Ann-Marie (ABA teacher), Zahida (behaviorist), Blaine (photo/videographer), and me (parent representative). We have prepared presentations on general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Our idea was to have two days at the beginning of the week to give the presentations, as a way to introduce the background knowledge about the therapies and strategies. Then we would spend the rest of the week working directly with the children (twelve of them, we were told) and their parents on an individual basis. Upon our arrival, we discover that things have been rearranged. The presentations are now scheduled for the end of the week, and individual sessions will be done first. Not only that, but due to a news article about our arrival that had been published the week prior, the number of children jumped from twelve to thirty. We never thought there would be so many. But then again, this is autism. The rapid increase in Kathmandu mirrors the increase in developed countries. I immediately saw the parallel.

So, we figured out a way to fit in 28 individual sessions with the families. We wish we could work with them all individually, but this was the best we could do. The two families we couldn’t fit in (and there were even more as the week went on!) agreed to attend the presentations at the end of the week and ask questions about their individual needs then. We set up stations in different rooms of the center, which is a two-story house that the parents rent (in addition to their regular living expenses). One room is for PECS and social story instruction, another room is for ABA/DIR Floortime instruction, and the third is for sensory integration. The parents and children rotate through each of the rooms, spending close to an hour in each one. Some of them have walked a great distance to be here. Some of them have taken various buses for over an hour. Some speak a little English, some none at all. By the time all of those scheduled for that day have gone through all of the rooms, the poor kids are past their limits. It is exhausting for everyone.  As an introvert, it is difficult for me to give a condensed version of my half-hour-long sensory integration presentation to each new parent. I have to do this otherwise they will not understand the reasoning for the sensory therapy techniques that Zahida (who is studying to be an OT) and I are suggesting for their children. I have to describe, among many other things, the vestibular and proprioceptive senses 28 separate times (29 if you count the presentation at the end of the week). I wish we could have done the presentations at the beginning of the week, so that everyone would have this information prior to the individual sessions, but I have to be flexible and focus on doing it differently than I expected. And here I see another parallel – learning to be flexible when plans change is something that my own son struggles with on a regular basis. Now I have some idea of just how exhausting it is for him.

Aside from adjusting to the change in plans and the increase in children, overall our individual sessions go very well. The children range in age from three to eleven, at different areas of the spectrum. Several of them are nonverbal, and some have limited verbal ability. Some are fearful, some are not. Some are quiet and complacent, others are loud and aggressive. Some throw sensory seeds all over the room, a few lie down and nap. Some put everything in their mouths, some categorize and line things up. But all of them, well, they are simply beautiful. I see so much of my son in many of them that it throws me back to the early days of his autism diagnosis, when we didn’t have the internet for information and support, and all the books I could find were archaic or otherwise not helpful. This is where those parents are. And they are wonderful – so dedicated to their children and eager to learn. My experience of having my son’s diagnosis twelve years ago helps me to have some idea of what they’re going through now. I look into these parents’ tired but yearning eyes and want to throw my arms around them.

And of course they have questions. Tons of questions. Questions about spitting, toilet training, masturbation, safety, eye contact, head-banging, you name it. They are sponges, for lack of a better metaphor, absorbing every suggestion, every piece of information I can give. But no one has all the answers, especially not me. And near the end of one of my individual sessions, when a five-year-old girl begins having a seizure, I freeze. Her mother is sitting cross-legged on the floor with her daughter lying in her lap. She does not speak English and the translator was needed elsewhere, so I have no way to communicate. But the mother, of course, knows what to do. She calmly holds her daughter as she seizes; I watch her little body twitch violently, and she moans with each spasm. I wonder if she is in pain, or afraid, but maybe her sounds are involuntary. I don’t know. I feel useless. I have no experience with seizures, and this one seems to be lasting a minute, but feels longer. Trying not to panic, I ask if she needs anything. The mother glances at me. I know she does not understand my words, but I think she senses the concern in my voice, and there is some sort of appreciation in her eyes.  Then she turns her attention back to her daughter, who soon stops convulsing. A moment later, the mother picks up her things and, with her daughter in her arms, says Namaste and leaves.

I take a break. I blot my face, drink some water, and go in the next room to observe the end of a PECS session. I know if I go somewhere alone, my emotions will overcome me, and now is not a good time for that. It is mentally and emotionally taxing, this work we are doing, but as I mentioned above, it is the most fulfilling of my life. I know that my suggestions cannot help everyone, like the parents whose children have seizures, but I also know that my presence here is making a difference. They know that people out there care. That we would come from half way across the world to try to help, to tell them they are not alone. Yes, that is the reason.

For photos of us “in action” working with the kids and parents, click here.

Symbiosis

I’ve never gone swimming with dolphins. But bathing with elephants has got to be at least as amazing.

We are in Chitwan National Park in southern Nepal for two days – a little side trip before working with Autism Care Nepal – as a way to become familiar with the people and culture. Chitwan means “heart of the jungle,” and with the humidity at 87%, temps in the 90s, that’s just what this is.

terraced rice farming south of Kathmandu

We arrived yesterday after a five-hour drive from Kathmandu down, down, down through winding mountain passes to this sub-tropical zone. I saw buses with passengers crouching on top and hanging off the sides. I saw roadside homes with corrugated metal roofs weighted down with stones. I saw poverty, but I did not see starvation. I saw terraced rice farming, cows, goats, and water buffalo, from which families obtain milk. I saw chickens and ducks, even a few pigs. Most of the Nepalese people get their needs met, just in a simpler way.

Our hotel in Chitwan is lushly landscaped with jungly trees, flowers, and plants, including cannabis. Apparently, smoking pot is only legal one day a year in Nepal, like a holiday or something. The rest of the year it’s illegal with harsh penalties, but that doesn’t seem to deter them from using it as a landscaping element.

the cannabis plant on our balcony

My room is magical. The floor has one-foot square tiles with brown and tan mandalas printed on them. The walls are brick painted a light salmon color. There are yellow-gold curtains, a ceiling fan, and even a mosquito-net canopy over the bed. I have my own white-tiled bathroom and a shared balcony overlooking the beautiful gardens. All that plus three meals a day, guided tours, and an elephant safari for $91 US dollars total. If it weren’t for the sweltering humidity, I’d swear this was paradise.

We wake with the sun and have breakfast of scrambled eggs, toast, and orange juice, then we ride in a Jeep to the nearby river where we will embark on our morning canoe trip. There are five of us, plus our guide in front and the navigator in the rear, all in the same dugout canoe (pictured above). With all of us inside, the sides of the canoe rise merely five inches above the water, and it bobs in a way that makes a couple of us uncomfortable, fearing our cameras getting submerged. And then concern for the cameras moves to the backs of our minds as the guide points out a crocodile. Yes, a full-grown crocodile, a mere fifteen feet away. We snap photos and continue on. We see many exotic birds, including kingfishers and peacocks. We see two more crocodiles, including one with just its eyes poking out of the water. Jungle, indeed.

the first croc – this close without zooming in!

Finally the navigator expertly steers us to shore and we shakily climb out and begin our walk through the jungle to the elephant breeding station. On the way we see foot-long orange millipedes, a six-foot high termite hill, and more birds. We hear their calls and the insects’ buzzing and all the other jungle sounds. It’s like Disneyland’s Jungle Cruise ride, except real. We get to interact with baby elephants – two eight-month-old twins, the only Indian elephant twins born in captivity, and a boisterous yearling. Their trunks are soft and inquisitive, and their eyes are soulful yet playful.

We go to the interpretive center at Chitwan National Park, where wild geckos skitter across the walls. Our guide points out one display in particular which describes the symbiosis between the monkeys and deer of the park. They have an interdependent relationship in which the monkeys, who sit high in the jungle treetops, toss down nuts and fruit for the deer to eat and warn them of approaching predators. The deer, in turn, carry the monkeys on their backs when they want to cross the river. In a similar light, elephants and people share a level of symbiosis. In southern Nepal, people train elephants as beasts of burden, and in turn, the people care for the elephants and bathe them in a way that the elephants cannot do for themselves. And so, my fellow travelers and I had the powerful emotional experience of bathing an elephant. Not by standing and using buckets and scrub brushes on poles as in the old circus cartoons, but by going into the river and bathing the elephants by hand. It was nothing short of amazing.

First, the elephants douse themselves using their trunk. The person(s) bathing them climb onto the elephants’ bare backs, and then the elephants fill their trunks with water and spray themselves and their bathers (I’m the one in front, pictured above). This goes on for a full five minutes. Then the bathers dismount the elephant and she (ours is female) lies down on the river banks so that one side of her body is exposed while still in the water. The human bathers then pick up a palm-sized stone and scrub the elephant’s thick skin, all the while rinsing her with handfuls of water. Then, the elephant slowly and carefully turns over to have her other side scrubbed and rinsed.

I will always remember what it is like to look deep into the eye of an elephant looking at me appreciatively as I gently wash her face. I am fully clothed, in river water up to my thighs, my bare feet are sunk in silty mud, and all I can think about is her gorgeous hazel eye looking up at me from beneath inch-long eyelashes. Four other people are bathing this beautiful creature, rinsing and scrubbing as a team. Tomorrow, she will give some of us a ride through the jungle.

wild rhino viewed during our elephant safari

In many ways I see this trip to Nepal as a symbiotic journey. We from the US are going to impart autism awareness and strategies for the Nepalese parents to help their children with autism through the use of PECS, ABA basics, and sensory integration. But we are not the only ones with knowledge. The Nepalese people have much to teach us about the importance of caring for others – including elephants – and the value of living simply. Our guide at Chitwan National Park told us that Nepal as an acronym means “never-ending peace and love.” We could stand to learn about that, too.

sunset along the river in Chitwan

*For more photos and Nikki’s description of our time in Chitwan, click here.

Kathmandu in the Morning

I have made it 24 hours remembering not to consume a drop of tap water. In Nepal, the tap water is not processed as ours is. Nepalese people have developed anti-bodies, so they are fine with it. But we cannot even brush our teeth with it. I like to wet my toothbrush before putting the toothpaste on it, and here I must do that, as well as rinsing afterward, using bottled water. I’m so afraid I’ll forget out of habit. I also have to be very careful not to allow water to get in my mouth when washing my face and showering.

We are staying in a charming hotel called the International Guest House and have air conditioning in our room as long as the power stays on. (In Nepal, power is often arbitrarily shut off for several hours at a time, any time of day. Some businesses – and especially hospitals – have generators.) Our room is lovely. Nepal’s main religion is a blend of Hinduism and Buddhism, so our room has a beautiful print of Hindu gods and goddesses on one wall and across from it is a gorgeous print of Buddha. Our room key is an old fashioned skeleton key, which I love. We have brown-gold shantung curtains on the windows and wooden screens with honeycomb cut-outs as room partitions. We have a private balcony overlooking a slate courtyard bordered by lush bushes and small potted trees and flowers. It is enchanting.

In the courtyard entrance of our hotel

In Kathmandu, at least in the touristy part called Thamel, many people speak a few words of English, some speak many, and I am again humbled. Everyone is friendly, and the children look so cute on their way to school, with their uniforms of a white button-up shirt, ties (both boys and girls), and pants or skirts that match their ties. Some of the little ones break into huge grins when they see us and say “Hello! Hello!” and we do the same.

We are on our way to the Monkey Temple, and after a while, Nikki (the director of Knowledge for People) and I aren’t sure if we’re going the right way. We can see it up on a hill top (in the above photo, top-center-right), but we’re not sure how to get to it. Nikki asks for directions. Some people, especially women, politely decline, but the men are more than happy to assist. We walk through residential areas, noting laundry being hung out to dry, many stray dogs roaming around, lots of brick apartment buildings, motorcycles, a few cows and a pig with piglets, and piles of trash everywhere. Kathmandu does not appear to have a waste management system. Then I remember that we are in the most industrialized part of a developing country. Most streets are narrow, some only partially paved, and everyone drives as fast as they can, honking horns wildly, especially around corners. When there is a near collision, there is no road rage. Both cars slam on their brakes, the drivers look at each other, both back up a bit, and then whoever has the right of way goes first. I have no idea who has the right of way. I just know that pedestrians don’t. We learn to stay out of the way, which is difficult without sidewalks. Crossing the street is a nightmare. I don’t know how people do it.

at the base of the Monkey Temple

The Monkey Temple, which we finally reach, is aptly named. They look like miniature brown baboons – crossing the walkways, climbing the trees, eating grass, grooming each other. I have to restrain myself from taking too many photos. This is amazing! They are so close! There are babies!

Being monsoon season, the humidity is super high, and my face feels as if it is melting off. Sweat pours down my back, chest, and legs. We drink (bottled) water as fast as we can sweat it out. After lying down and sleeping twelve hours straight last night, my ankles and feet are not as swollen, but they are not yet back to normal. I look ahead at the steep stairway up to the actual temple at the top of the hill and pace myself as we begin the climb.    

We are accosted by a mother and children begging. They will not leave us alone, especially one girl around age ten who follows us half-way up the stairs, saying, “M-m-m-m-hospital-m-m-m-broken arm-m-m-m.” I glance at her arm, elevated by a thin scarf tied around her neck. I can see all of her arm and it is clearly fine. We have been told not to continue the cycle by giving in. I gently say no about six times, even as her eyes penetrate me.

We reach the top of the beautiful, albeit touristy temple and proceed in a clockwise motion around it. We take in the view of the city, buy some prayer flags, and slowly head back down the steep stairway. Not wanting to get lost on the way back to the hotel, we take a cab, with Nikki deftly bargaining the driver to less than half the fare he originally proposed. (According to her guide book, he was really trying to rip us off.) He darts through traffic, weaving all over the place, probably mad that he couldn’t fool us, but he gets us back to the hotel okay. We go in to cool off and rest, exhausted from the morning’s excursion. Then we will head out in search of lunch and more bottled water!

For more photos and Nikki’s description of our day, click here.