Tag Archives: hope

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 sons have. I remember hoping when Neil 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 both of my sons. In the grand scheme of things, in all of the hopes that I’ve had and still have for my sons, 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 autistic son (at 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.

The Second Time Around

I feel honored to have my monthly post [originally at Hopeful Parents] fall on Father’s Day! I would love to take this opportunity to share a little bit about my dad, and why he inspires such hope in me.

With Dad in China, 2005

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My father’s parents emigrated from Czechoslovakia in the 1920s and settled in New York. Two decades later, the desire for new surroundings struck again and they drove across the continent to live in Los Angeles. My father was twelve years old at the time, and the experience must have ignited in him a passion for travel. So strong is it at this point that I don’t even know how many countries he has visited, but I think it’s over forty. And he has set foot on every continent except Antarctica.

It’s quite likely that he might have had time to travel to even more countries, but on many trips he likes to return to places that he’s already been, and loves. He’s been to Greece at least a dozen times. Same with Thailand. And there are several other countries he’s returned to more than once, just because he liked it there and wanted to go back – or maybe he missed something the first time around. Or he wanted to return to certain countries to share the experience with any of his four children. Whatever the reason, he is a seasoned world traveler who enjoys planning his trips as much as he enjoys taking them. It’s what he lives for.

Just over two years ago, my dad was diagnosed with colon cancer. Surgery was rapidly scheduled to remove the large tumor that had been growing for several years. Dad pulled through and started chemotherapy. The oncologist said that it looked like he got it all, and Dad felt tired but good. He flew to Peru and climbed Macchu Pichu, and then visited some out-of-state family members. We all felt confident that the cancer was gone. But about a year later, it returned, and this time it had spread to a lymph node outside the colon, so Dad’s doctor placed him between stages III and IV. It was worse than the first time, and we were scared. He had surgery again, and this time, the surgeon accidentally cut his ureter. A stent had to be placed on the ureter for several weeks, causing considerable pain, in addition to the usual post-op discomfort. All the while, Dad kept a very positive and hopeful outlook and continued to plan his trips.

But he worried us, saying things like he wanted to take his teenage grandsons to Thailand now rather than when they graduated, since he wasn’t sure how much longer he’d be around. I told him he couldn’t think like that. Dad soon started his second round of chemotherapy, more aggressive this time (twice monthly IV treatments plus daily pills), which caused significant fatigue and cold sensitivity. Finally, when the treatments were over, Dad’s bloodwork showed that the cancer indicators had dropped. Feeling relieved and optimistic but not wanting another repeat, Dad decided to become proactive. He researched types of alternative cancer treatment and prevention and dramatically changed his diet to bolster his immune system post-chemo. He started drinking daily green smoothies and taking various supplements, determined to retain his health, to do everything possible to keep the cancer at bay.

And so far, so good. His latest tests taken just one month ago look promising. He continues to make his health a priority and maintain his positive outlook. I can’t put into words how inspired I am by his hopefulness throughout this whole experience. And I am hopeful too. I’m hopeful that this time he’s beat it, that he’s going to be around for much longer than he’d thought last year. No, Dad’s not going anywhere soon.

Except Thailand, of course. And Greece. Or maybe Peru again . . .

Wishing everyone a very Happy Father’s Day!

**UPDATE** It is with deepest sorrow that I must write that my father did indeed lose his battle with cancer, less than a year after this post was written. He was 67. He had traveled to 55 different countries. I wrote a post at my author site about caring for him in his last days: What My Father Taught Me.

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.

A Little Hope

Yesterday I attended the first family-centered support group meeting for ASD families in southern Oregon. I’ve previously attended other support groups for parents, and they were always welcoming, but I felt like something was missing. I would leave without feeling better than when I had arrived. It wasn’t the type of support group I was looking for.

This one yesterday was different. It was so affirming to have the kids there. The parents, the ASD kids, and the siblings all there, all interacting – it just felt right. I met other parents also at the teen stage as well as others just starting out. The level of understanding was inherent, as was the bond. I saw tiredness on some of their faces, and stress. But I also saw hope.

And the hope was there because the older kids were there. I saw some young parents watching Nigel, and that gave me a sense of pride. Because I know how far he’s come. I still have many concerns about the future, of course. But if Nigel, just as he is, can give some young parents hope for their child’s development, that’s something. That’s really something.

I did the same thing when I went to the autism and puberty seminar that I attended in October. One of the presenters at the seminar was a higher-functioning autistic adult. All the parents were rapt as we listened to her, watched her, absorbed her. She was hope to us, those of us with teens. She patiently answered questions, related stories of her childhood and teenage years, what she had been like. We all wanted to know when she had started talking so that we could compare that to our own children’s past development, and look ahead to how far she progressed, thinking that the potential was there for our kids. Of course, there are no guarantees, and we know that. But still. We hope.

If you ever have the opportunity to attend a seminar where an autistic adult will be presenting, I encourage you to do so. You will come away with a sense of understanding that you couldn’t possibly get from reading a book. You can’t look at that person and think, That’s what my kid could be like. But looking at them and just experiencing their presence will give you hope. And we could all use a little more of that.