Long As I Can See the Light

We have a well-loved concert venue here in southern Oregon called Britt Festivals. I’ve enjoyed seeing many shows there over the twenty years that I’ve lived in this area.  It’s an outdoor venue where patrons can bring their own picnic dinner, including beer and wine, and listen to great music on a hill under the stars. I try to go once every summer, and every time I go, I wish my boys could be with me. For most of the summer shows, they’re in LA with their dad, but that, of course, is not the only issue. How do you take a sound-sensitive autistic teen to a concert? Would ear plugs be enough? Could he handle the sensory bombardment for over two hours? Would he even enjoy himself?

Inspired by reading about C going to a nightclub (!) last year, I decided that I wanted to take Nigel to a concert at Britt. I figured that we had a better chance of success with this venue since it is outdoors, and the sound level would not be contained within walls. He could also lie down on a blanket on the grass, read books, and eat food from home to increase his comfort level. And then when I heard that one of his favorite bands, CCR, was coming to town the week after he and Aidan would return from LA, I knew that I had a recipe for success. I bought three tickets.

But I also knew that in order for it to be successful, I needed to prepare him. I called him while he was still in LA and told him about the upcoming concert we’d be attending, assuring him that we’d bring ear plugs. He was excited about seeing his first concert and that it would be CCR! He was mildly disappointed that John Fogarty would not be present (the band is now called Creedence Clearwater Revisited), but he was still very motivated to go. A few days before the concert, I showed him the website of the venue, with a map showing the grounds and the lawn area where we would be sitting. I explained to him that even though we had tickets, we still needed to wait in line for at least an hour to get good lawn seats, and that once we got our seats, we would need to wait an hour and a half before the concert started. Then I had to explain the concept of an “opening band” and field questions about why there would be one before CCR took the stage.

So we packed lots of food, beverages, books, National Geographics, and our magnetic portable chess game. Rain was forecasted for that one day of the week (damn!), so I packed umbrellas and jackets. And of course – the ear plugs. It rained just a little while we were waiting for our seats, and Nigel took it in stride under an umbrella. Finally we went inside, found a good spot, and spread out our blanket. We read for a while and relaxed, and when the music started, Nigel and I were in the middle of a chess game. His eyes grew huge, and he said, “Quick, Mom! The ear plugs!” He put them in and adjusted to the sound level. I was relieved.

But I was happiest when I saw how much Nigel enjoyed the concert. The vocalist, John Tristao, met with Nigel’s approval by doing an amazing job of recreating Fogarty’s distinctive voice. Nigel kept leaning over to me, making little comments like “They are using ‘60s graphics on the backdrop,” “I feel like I’m in the ‘70s,” and “I bet the aliens can see this concert from outer space.” I loved when they played “Hey Tonight,” and Nigel looked up and said to me, “The stars are perfect with this.” I had been worried that he would merely tolerate the concert, or that he wouldn’t engage. But he got up and danced, waved his arms in the air, cheered quietly, and even sang along. Seeing him mouth the words “I wanna know . . . have you ever seen the rain . . . comin’ down on a sunny day?” brought tears to my eyes. When the concert was over, I asked him, “What did you think of that?” and he said, “That was rockin’ awesome!!” with the most enthusiasm I’ve ever heard.

In the middle of their set, the band did some introductions, and the drummer, Doug Clifford, who was in the band at the beginning, told the story of how they met in seventh grade and dreamed of being in a rock band. He told of their success as musicians, eventually having two number one albums on the charts. And at the end of his short, inspirational talk, he urged the audience, “Hold onto your dream.” I really needed to hear that. I think we all do.

The Long-Distance Family

My boys, my two big teenagers, are home! I drove the long drive to pick them up, hugged them, laughed when they called me “Dad-Mom” for the millionth time, piled their suitcases, computer, pillows, books, movies, Xbox 360, and two bicycles and helmets into my small SUV, and drove back home. Whew. This was their eighth summer in LA.

Last year when they returned, I wrote about my anxiety concerning the long-term effects that this going-back-and-forth arrangement might have on them. I can’t help thinking about that. But then I realized that what we do is far better than the alternative – not spending time with their father. It’s not an easy situation, and we do the best we can with it. But this year I didn’t really dwell on that too much. This year, this pick-up, was all about reminiscing.

I remembered the first time we did the 700-Mile Kid Swap, nearly eight years ago. Nigel was seven and Aidan was five. It was for less than a week that first time, for a winter visit. I remember how we transferred all of their stuff out of my car into their dad’s car, hugged goodbye, and drove off in opposite directions. They got in the southbound lane to LA, and I got in the northbound lane to Oregon. I remember crying on the onramp as I realized that this would be the first of many times that I would drive home without my children. And they were so little.

That first summer, when Aidan turned six and Nigel was not yet eight, they were gone for six weeks, and I went to visit them at the three-week point. I think Nigel thought that I had come to take him back with me, and he cried when I said goodbye after the weekend visit, actually said “All done LA,” at a time when his speech was so limited. Broke. My. Heart. And then when they did come back to Oregon, Aidan had such a hard time transitioning and readjusting that he lashed out at me and told me he didn’t want to live with me anymore. I had thought we might go through that when he was a little older, but not at six. It took him a month to work through it. Broke. My. Heart.

So it’s been hard – on all of us. And though we still miss each other when we’re apart, we’ve come a long way in dealing with our reality. We all have hard parts of our lives – autism, divorce, money or health issues – and we do the best we can with them. That’s all we can do. We have to work with what is. And I think that, over the years, my boys and I have done pretty well with our “what is.” We might feel, as Aidan said at age seven, like we have two lives, but we’ve learned how to blend them seamlessly. We’ve adapted. And we’ve thrived.

It may not be what I would have wished for or expected when I started my family, but that’s okay. It may not be ideal, but we’ve made it work for us, and I’m rather proud of that. We’re, like, pros in the long-distance family department. We have absolutely no transitioning problems now. And I only got called “Dad-Mom” twice!

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.

*          *          *

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.

A Letter to My Son on His 13th Birthday

We interrupt the Nepal travelogue to bring you this shocking news: I am now the mother of two teens! How is that possible?

photo taken March ’08, at Great-Grandma’s 90th Birthday Party

Dear Aidan,

Some parents will tell their teenagers that “it seems like only yesterday” that they were born, that they were learning to sit up or walk. And I’m sure it’s true for them – I’m not knocking it. But you and I both know that it’s been a long road in this family. And while I can’t believe you’re 13 (!), it doesn’t feel like yesterday that you were little.

Of course I remember holding you, rocking you, singing to you. But I also remember that soon after you were born, Nigel began exhibiting signs of autism, which we didn’t know at the time. And then both of you exhibited extreme sensory distress and significant language delays. For a while, I thought I had two boys with autism. And while you were never officially diagnosed, you also had special needs that had to be addressed.

But whether you had special needs or not, you have always been special to me, and important. I just want to make sure you know that. Because in spite of having your own needs, you have often had to take a back seat to someone whose needs overrode yours. And you have always done so with love and acceptance. I know you often felt like you were the older brother, having to look out for Nigel. When you were younger, you wondered why your brother acted the way he did. I know you still do. And I know it’s been hard for you, especially at school, to carve out your own identity separate from your brother’s and to deal with the comments of small-minded peers.

I so admire you for your perseverance, and your courage. You faced a scary health problem earlier this year, and I know how that worried you. I was worried too. I’m so relieved that the surgery was successful and that you’ve recovered. Your best friend moved away a few months ago, and that’s been hard for you too. But you started hanging out with other kids and made the best of it, and I’m so proud of you. You’ve even started eating new foods. You are resilient, responsible, and resourceful.

I love your amazing, intelligent, creative mind. I’m in awe of the questions you pose and the deep, philosophical discussions we’ve had. I enjoy curling up on the couch with you and watching movies. I’ve missed that so much this summer! And I’ve missed you. I’m sorry I can’t be with you on your birthday, but you’ll be home soon, and we’ll make up for it. I’m glad you’re having this time with your dad, because that’s important too. I know you miss him a lot during the school year, and you do the best you can with that. Like I said, it’s been a long road in this family.

Happy Birthday, Aidan. I’m so happy that you’re my son, for so many reasons. I hope that your first year of your teens is way cool!

All my love,

Mom

P.S. Being a teen has its privileges. You’ll be happy to know that I’m finally getting you a cell phone.

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.

Getting There

I love to travel, and I’ve been to several different countries and parts of this one. And though I always enjoy exploring the new places once I arrive, I enjoy the process of getting there as well. You know, ‘getting there is half the fun’ and all that. Well, I don’t know about half, but I always enjoy something along the way.  And with approximately 27 hours of travel time from LAX to Kathmandu, I knew I’d have fun people-watching and eavesdropping.

Take, for example, the very young family I heard behind me on the shuttle bus to LAX. I couldn’t see them, but from hearing them talk about which friends hooked up at which bars and then bicker about holding their baby the right way, I deduced that they were fairly young. At one point, the girl, whose voice was much louder, declared, “I’m so mad at you! You didn’t tell me that!” The guy answered, “I just now remembered.” And she responded, “You have to take care of the baby the rest of the night!” But my favorite, a moment later, was her response to his foolish statement, “I don’t get why you’re mad.” She said, “What don’t you understand? I’m wearing braces and I’m pregnant!” Classic. I doubt I’d hear that in most other countries.

On the flight to Bangkok, there is no one next to me, so not only can I avoid annoying flight chit-chat, I can also turn to my side and put my feet up while I sleep. I read, I watch movies, I am served three full meals, including wine that’s semi-decent. It’s probably the most enjoyable international flight I’ve ever had. Then I have four hours in Bangkok before the flight to Kathmandu. I walk around for about an hour, then sit and read, then walk some more. My ankles and feet are swollen with edema, and I massage my calves to help my circulation. I am allowed to go through security about an hour before boarding time, and I go to the gate and sit down amid a group of fellow travelers.

It is so humbling, to me, to hear people from different countries conversing in English. It surprises me at the Bangkok airport to hear a Philippine woman telling a Nepalese man about the internship she is completing for her Master’s program. They both speak in flawless English. Humbling. All I know in Nepali is “Namaste.”

So far there are five Caucasians waiting for this flight. A young couple, a lone man, and two lone women – including myself. There are a few Japanese and one Korean (who is also speaking English). Many travelers wear surgical masks for airborne disease protection. For this trip, I have been vaccinated against typhoid fever, tetanus, diphtheria, and hepatitis. I brought Deet spray, probiotic pills, and most of my medicine cabinet. I hope I stay healthy.

Another Caucasian man saunters down the steps to the gate. The Philippine woman is asking the Nepalese man how to say “nice to meet you” in Nepali. The Nepalese man tells her a very long phrase and she repeats it. He smiles and says that she can just say “Namaste.” Then she practices “thank you” and “you’re welcome” in Nepali, and I feel that I should have learned a little Nepali before this trip. I really wish I knew how to say “excuse me” for when I bump someone or commit some social faux pas, which is highly likely. I could ask the lovely Nepalese man who is talking with the Philippine woman, but I’m too introverted to join in. Not for the first time, feeling at a great disadvantage, I question the wisdom of taking this trip. Then another Caucasian man strolls to the gate, perhaps a clueless American like me. I try again to listen in to the conversation between the Philippine woman and Nepalese man and try to absorb something. It’s the least I can do. The Korean woman joins them and I feel simply ridiculous that I cannot bring myself to do so.

Moments later, I find myself behind the Nepalese man as we are in line waiting to board. His wife, an absolutely beautiful woman, turns and smiles at me, and I smile back. Her husband picks up a Wall Street Journal – in English – as we board the plane. Again I feel like the ignorant American. The plane is even bigger than the one I took on the 16-hour flight here (16 hours!) and appears to be fuller. I cannot put my feet up on this flight, and my ankles have swollen to twice their size with edema. It feels like the skin on them will split. I have endured this sensation now for at least eight hours. Fortunately this flight is only about three hours. But I’m disappointed to find that, although I have a window seat, it is not only directly over the huge wing, but it is on the left side of the plane. According to my online research, if you’re on the right side of the plane when approaching Nepal from the east, you can see the Himalayas.

We take off, and I catch my first glimpse of Thailand, having been in the airport for four hours. It is lushly green due to the monsoon season, which Nepal is also having. Not many tourists this time of year; I fear I will stand out too much, me and my blond, American “Namaste.”

After viewing a movie, a map popped up on the screen to show the flight’s progress. We are half-way to Kathmandu, looks like. And my swollen ankles and feet are sca-reaming. This has happened before on a trip – two years ago when I went to Greece and it was 122 degrees on Crete as we made our way to the airport to fly back to Athens. But now, I can’t put my feet up on this flight, and it scares me to even look at my ankles.

Clouds all across Myanmar and Bangladesh. We are above them. Ah! An announcement. We are beginning our descent and will land in twenty minutes! Relief for my ankles sooner than I’d thought. And the flight attendants come by with gorgeous purple and white orchid boutonnieres for each passenger. I put mine on and happen to glance out the windows on the opposite side of the plane. I see small, white pointy peaks, and for a second I think they are just the clouds. Another passenger’s head blocks my already limited view from all the way across the plane. And he is looking because – yes – it’s the Himalayas. The man next to him takes a photo. I strain to see again, and I catch a tease of a glimpse. But then the plane turns and, ohGodinheaven, I see them. I see the beautiful snow-covered peaks poking up through the clouds. I see them out my own window. They are truly magnificent. We turn again and descend lower and I can no longer see them. But I did. I saw the tips of the incredible Himalayas with my own eyes.

I am breathless now, not even thinking about my ankles, or the fact that I only know one word in Nepali. Namaste. Yes, I am here. And Namaste again.

Quite Warm

The Scene: A family of three – a mother and her two teenage sons – strolls into the gated outdoor pool area of a hotel. It is early evening; the desert sun is low. The mother settles into a chaise lounge near the pool, and her sons drop off their towels on chairs near her. They walk around to the deep end of the pool as the mother opens up a book. The older brother dips his toe into the water.

Older brother: It’s quite warm.

He backs up, and then strides quickly toward the pool as he jumps and pulls himself into a perfect-form cannonball. Perfect. The mother, impressed, didn’t know that her son could do that so well. Seconds later, he calmly surfaces.

Older brother (in the same tone): It’s quite warm.

Mother: Good!

She smiles at her son, wondering what movie he is quoting. Usually when he repeats himself, it’s because he’s either employing echolalia or is expecting a response. He is satisfied with her acknowledgement and glides over to the far corner of the pool. The younger brother then readies himself: he backs up, strides toward the edge, and jumps. He does not exhibit the cannonball form of his brother, but his long hair flies impressively. The mother wishes she had filmed it. He surfaces, spluttering.

Younger brother, sneering: You LIE!!

He lunges through the water toward his older brother, who laughs as he evades him. The mother hides her smile behind her book. So that’s what he was up to, she muses.