Plan B

 

Sometimes I think that the last sixteen years of my life have all been one big Plan B. One long divergent path. Sixteen years ago I graduated from college and quickly found myself with two children long before Plan A had stipulated. Having two children with special needs was not in Plan A. Autism (although it starts with A!) was not in Plan A. Divorce – no. Single parenting? No way in hell was that part of Plan A.

And so I learned that I didn’t just need to have a Plan B, I was constantly living it. We all do to some extent – life takes different twists and turns, and we all must adapt to change, some of it completely unexpected. Plan B has to happen whether you planned for it or not, whether it was an actual plan or a split-second decision. You go into the grocery store, race around throwing a few things into your cart, hoping that your distressed autistic child can hold it together for just a few more minutes, and then someone turns on an electric coffee grinder and it all goes to hell. Your child shrieks and tries to bolt, and it’s time for Plan B. You leave the blasted cart in the blasted store and carry your hysterical child out to the blasted car, dragging your other reluctant child by the arm because you can’t leave him in the store because he’s a toddler for God’s sake and you’re a blasted single parent. Everybody’s either shrieking or crying or kicking you or pulling on you or staring or shaking their heads at you. And you still didn’t get the few groceries you needed. Plan B sucks. Sometimes, even, it’s the loss of a job, a home, or a loved one – and then Plan B takes on a whole different persona, a whole different significance. It’s no longer just a new plan. It’s a safety net. Those, of course, are the most life-altering Plan Bs of all.

But I’ve also learned that Plan B, whether big or small, doesn’t always have to suck. Sometimes Plan B can even offer some comfort in disguise. And even though it’s not what you wanted or hoped for, you can make it work. It’s not Plan A, but in most cases, you can live with it, sometimes because you have no other choice. Slowly you get used to it. And you might even warm up to some aspects of it.

My latest Plan B, in a long string of Plan Bs (sixteen years’ worth), involved what to do after I’d moved my two teenage boys seven hundred miles away to live with their father in Los Angeles while I stayed in Oregon to sell the house. First, Nigel’s IEP wasn’t amended so that he could go to a special school for students with autism. So we came up with the Plan B of their father moving to a better school district in the L.A. area, one that had a good special education department. Meanwhile, I felt so confident with the timing of this major change in our lives that I was certain my house would sell before August. Surely one of those two things would work out. But neither one did.

So technically, we’ve moved onto Plan C at this point, or perhaps Plan Q by now. The boys are coming back to Oregon and will attend the same schools that they did last year. I have taken my house off the market. I’ll have to work extra hard to get Neil’s team to meet his academic needs, which is the whole reason why I wanted him to go to the special school in the first place. But here’s the wait-a-minute moment, the half-the-battle factor – Neil loves his school here in Oregon. He has friends here, he’s comfortable here, he’s safe, and he’s happy. Why would I want to mess with that?! Well, there are two reasons why – one, his father’s not here. Two, the school hasn’t yet figured out how to teach him to work independently. And those are pretty significant reasons.

In spite of that, every day I’m feeling better about this particular Plan B. The boys will be back at familiar schools in which they are comfortable. And I don’t have to find a new job (even the thought of that was a huge stress for me – those of you going through it, you have my deepest empathy). Those are pretty significant reasons too. And so, although Plan B isn’t what I’d hoped for (is it ever?), I can live with it. It might turn out just fine after all.

This and the photo at the top are of our much-loved and oft-climbed tree, which split in half a few years ago during a storm. The stronger half is still standing in our front yard, and the firewood from the weaker half lasted a long time.

Thoughtfulness

One of Neil’s favorite conversation-starting scripts (when “What’s your favorite natural disaster?” doesn’t go over too well) is “What’s your favorite Disney movie?” He loves to ask people this and has asked me many times over the years, even though I’ve told him the same thing each time – The Rescuers.  I think I was seven or eight years old when it was released in theaters, and I just loved it. The story intrigued me, and I found the characters both touching and funny. When we got the LP record, I listened to it so much that I memorized many of the lines (um…I guess it runs in the family). Neil always seemed to forget after I told him that it was my favorite, but I didn’t think too much of it. It could be that it was just a comforting script for him, and the repeated asking (fortunately not daily!) didn’t bother me too much.

*

Several years ago, on one of my occasional trips to the bookstore to hunt for autism books (this was back in the days when Barnes & Noble did not have an autism section; the entire special needs category, in a large bookstore, encompassed a single shelf with maybe only one or two books on autism, if I was lucky), I happily discovered Exiting Nirvana by Clara Claiborne Park (who also wrote The Siege). Neil was seven or eight at the time, and this was the first book I’d read on autism that not only gave me hope, it was actually helpful. I highlighted many passages throughout the book (on almost every page!) because so much of what I read of the author’s daughter reminded me of my son.

One of the sections that really stood out to me was about her daughter’s development in thinking of others and doing thoughtful things for other people, keeping in mind their needs or preferences. The most memorable part of the book for me was an anecdote that illustrated how, in adulthood, she had finally mastered this. While walking on the beach with her father on a cold and windy day, she decided to go back to the house for a sweatshirt. When she returned, not only did she have her sweatshirt, she had also brought her father’s jacket, unasked. My heart soared just reading about it, thinking that someday my son might do the same.

*

My sons are 700 miles away, visiting their father as they do every summer, and I haven’t seen them for six weeks. We talk on the phone and occasionally exchange little emails, a new development since last year. A month ago, after they had been gone two weeks, Neil asked me to email him pictures of our cats, so I took some new ones and sent them. The next time we talked on the phone, I asked him if he received them, and he said yes and thanked me for them (!), and I thought that was the end of it. I was just happy about the unprompted thank you (a recent milestone for him)!

A few days ago, I received the following email from Nigel. It might have taken four weeks for a response, but it was worth it. Imagine my complete delight.

Hi mom, thanks for the photos. So I thought of a photo to send to you in return. It’s of two of the characters from your favorite Disney movie: The Rescuers.

I love and miss you and I hope to talk to you again sometime.

Love,
From your son, Nigel

 

Summer Blues

Is summer over yet?

Don’t get me wrong. I’m a heat-seeker. I thrive on the warmth, crave it all year. So I love the weather. But I hate missing my kids.

This is their ninth summer in Los Angeles with their dad, 700 miles away from me. For nine summers I have sat at my desk and stared at their pictures and talked to them on the phone. My “conversations” with Neil haven’t always been on track, but he’s gotten better as the years have gone by. And I’m just glad that he has the ability to talk on the phone in the first place. Because that wasn’t always the case. These nine years have brought so many changes.

So I sit here, looking at my desk photos, clicking through summer posts from 2008 and 2009, wondering what the heck I wrote about when my kids weren’t even here. I wrote about several phone conversations, and I did a series on Neil’s early development. I wrote book reviews and posted about miscellaneous autism and special needs topics. Last summer I wrote about my incredible trip to Nepal for autism education.

But this summer I find myself at a loss for material. My main sources of inspiration are not in my presence to say funny or profound things. Our phone conversations consist of what-did-you-do-today and I-miss-you and the occasional movie idea/obsession monologue.

But the real reason is that I’m not at my emotional best right now. I’m disjointed without my boys, I’m disappointed that my moving plans aren’t coming together, and I’m disheartened in general. Plan B will go into effect soon, and it’s a letdown. I can dress it up and say that I’m hopeful, but it’s not at all what I had hoped for. It just doesn’t seem right – or fair – to have the blues in the summer. But I do.

Photo: Late summer, Crater Lake, Oregon

The Different Card

As is common in many autism homes, we had PECS cards all over the place. We started using them when my son was three years old and sort of phased them out of use by the time he was ten or so. And they were a godsend. We could tell him when we were going somewhere, he could tell us what he wanted, or we could tell him what needed to be done instead. We could use them to make visual schedules so that he could anticipate what would happen when, to ease his anxiety. And one card that we used quite often was the Different Card. If the day’s plan deviated from the norm or what he was used to, we would show him the Different Card with the two arrows pointing in opposite directions, and he could process the change. Even in his non-verbal days, we’d show him the Different Card and once in a while he would just nod slightly in acknowledgement and then keep moving, seemingly unfazed (although usually the presentation of this card was met with howls of anxiety). He knew something would be different, and he mentally prepared himself the best he could.

We’re three weeks into July. I thought by now I’d be writing about how crazy-busy I am with packing my home, downsizing a four-bedroom house into a two-bedroom apartment. I thought by now my house would be sold. I thought by now I’d know where my children would be going to school in September. I thought by now at least some of the unknowns would have revealed themselves.

But really, I had only hoped. After all, how realistic were any of my thoughts? And hope, though fervent, is still wishing. Sometimes I feel foolish, sometimes resigned, often dejected. When things aren’t going the way you’d hoped, how else should you feel?

It’s hard to keep at it, to remain hopeful. But I’m a long-time special-needs parent. My son has taught me to believe, and I am a champion of hope. It’s what I do, what I’ve done all along. My major moving plans are not going the way I’d hoped, but regardless, I know that life will work out the way it should. It always does, whether I worried or not. Whether I planned or not.

And that’s when the other thing that we do best comes into play – when things don’t turn out as we hoped they would, we adapt. We go with Plan B (or come up with one on the fly) and keep moving, because that’s what we’ve always had to do. That’s our life. And whether it feels that way or not, I think that’s actually pretty hopeful.

As for my situation, what will be, will be. It will be different than how I’d thought, but that’s okay. I know different; I can handle different. My son has trouble handling different, but we’ll get through it. I’m not sure if the Different Card will work as well this time (or if I even still have it), but he’s come a long way since his non-verbal days, and maybe he’ll just nod his head and keep moving, like he did all those years ago.

I’m hoping.

Surrender

It would be almost impossible to enumerate the many things we learn from our children, particularly those who have special needs. Infinite patience, for one. Hope. Perspective. Appreciation. Acceptance. Love. And maybe a thing or two about dinosaurs or natural disasters.

But with each of our children, special needs or not, if we really stop to think about it, we might find that one thing stands out above all else. The one thing that we really needed to learn from them, and from them alone. I wrote recently that what I have learned from Neil is the power of belief.  More than anything else, every day of his life, Neil has taught me to believe. But what I have learned from Adam is just as valuable.

In a word – surrender.

We’re not conditioned to view surrender as a good thing. To most of us, it means giving up. But to me, surrender means letting go. It means letting go of that which I cannot control. It means letting go of expectations. It means accepting What Is. And it’s something that Adam, even more than Neil, has taught me every day.

*

Unfortunately, I don’t write as much about Adam. This website is called Teen Autism, and Adam was never officially diagnosed on the spectrum. He did, however, experience a significant delay in language development, necessitating speech therapy until almost age ten. But what really affected him – and still does – is his sensory processing disorder. He must have been miserable as an infant, toddler, and even a preschooler. It wasn’t until age five that he seemed to be somewhat at home in his body; he was finally talking and smiling more often than crying and yelling.

But his eating issues continued to get worse. Whereas I would call Neil a picky eater, Adam is a limited eater. A year ago, as he was nearing 13, I started to realize that it seemed to be a control issue with him – not to control me, but to have some control in his life. He couldn’t control that his dad, whom he idolized, lived 700 miles away. He couldn’t control that he had an autistic brother. But he could control the food that he decided to eat. So what started off as a sensory issue developed into something even more involved.

And it bothered me greatly, not just because I worried about his health and his growth. It bothered me that I couldn’t just cook dinner for my child and he would eat it. Even at age 13! It bothered me that he was a teenager and, like his brother, should have been eating me out of house and home (even though Neil is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Adam would eat more food when he was with his father. I took him to see a counselor, and he fought me, saying, “You’re making me do something against my will!” I compromised, telling him that if he increased his dinner choices to seven things, one to rotate each day of the week, that we would stop going to the counselor. He reached that point within three weekly sessions, and although I followed through, he has since lapsed to five or six items on the rotating dinner menu.

So I surrendered.

I let go of my expectations about Adam’s eating habits. I let go of my expectations about how he responds to having an autistic brother (hint: it’s not always noble or gracious; in fact, usually not). I had to surrender. I had to. And I thought that if he could spend more time year-round with his dad that he might start eating better when he’s with me, too.

*

He has been with his dad for over three weeks now. I’ve talked to him several times, and the last time I did he told me, with excitement and pride in his voice, “I’ve been trying lots of new foods, Mom! I’ve been eating a lot.” And I told him, choking back tears, that I was so glad to hear it.

And someday soon I will tell him that there is nothing I wouldn’t have done to help him to be as happy and healthy as possible. I will tell him that it’s okay that he’s not always glad to have an autistic brother, that I honor his feelings. I will tell him that I accept the fact that he eats differently. And I will tell him that I have become a more balanced person because of it, because of learning to surrender.

Adam, age 9, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

Ninth Grade: A Review

I had this great idea many years ago. At the end of every school year, I would write a review of how that year was for my two sons, a separate entry for each, describing not only their progress but also their personality, their likes and dislikes, and things they said or did. As a writer, I figured that was the least I could do.

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Neil starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Neil advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Neil turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Neil, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Neil’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Neil (with Adam) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Neil attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Neil and I watched the movie Adam together and had a great discussion about it, and Neil found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Neil attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Neil started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Neil went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Neil had a major seizure, his first.

As you can probably gather, Neil’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Neil, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

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 and you have an old camera, 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.

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:

What are your summer vacation plans?

What Really Matters, Part 2

These goodbyes are just about killing me. Since school is out, I did what I usually do at the end of every school year – I write a thank you note to those who had worked with my son, telling them how much I appreciate all they’ve done. Only this time, it wasn’t a thank-you-for-the-great-year. It was an I-can’t-thank-you-enough-for-the-difference-you-have-made-in-my-son’s-life.

A few days ago I sent an e-mail to the Regional Autism Consultant for southern Oregon, who has known Neil since his non-verbal days and worked one-on-one with him years before she took her current position. I think she has worked with my son for twelve years. So I began with, “You’ve been in the picture so long that it’s hard to come up with an adequate way to thank you” and proceeded to express my gratitude for all that she has done, including designing Neil’s weekly social skills class (and recruiting other students to be in it) specifically for him. Her gracious response made me cry, of course, especially when I read “Neil brought such wonderful perspective to the social skills group, he was so very open and honest and a very active participant which really made the group successful – I will miss him so very much.”

*

Last week, I took Neil to his last Scout meeting, where they had a goodbye party for him. Being in this particular Scout troop has been so beneficial for Neil, for many reasons. As can well be expected (due to terrible news stories about abuse in some Scout troops), a Scout troop is only as successful – and as good – as its leader. And I don’t see how there could possibly be a better Scoutmaster out there. We are so blessed with the troop that Neil’s been part of for almost six years. Our Scoutmaster is by far the most patient person I’ve ever known. He also truly cares for Neil. When the party was over and it was time to leave, the Scoutmaster said some generous parting words about Neil and his progress as a Scout, and then he asked Neil to stand at the door so that every Scout could shake his hand on their way out. I was so touched, so emotional, that I couldn’t even watch.

Our main consolation, which I keep reminding myself, is that we have close family that we will be able to see much more often in L.A. The boys can spend unlimited time with their father, who has lived there for over eight years. They have an uncle and two aunts there who adore them. And then there is their grandfather, who plans to take them to Thailand later this year. I have missed all of them tremendously over the years that we’ve been apart, and I’m so looking forward to sharing more of our lives with them. But as important as family is, kids – especially teenagers – need their friends.

As we drove home from the Scout party that night, Neil said to me, “I don’t know if I’ll be able to find such good friends ever again.” And of course that really did me in. I croaked, “Oh, honey. I know that your friends here mean a lot to you, and you’ll miss them so much. But you’ll be able to find new good friends in L.A. And they will find you. Because you are a very friendly, caring person, and good people will always want to be friends with you. I really believe that, Neil.”

He simply said, “Yeah.” But there was hope in his voice.

*

The boys have gone now. They are in L.A., barbequing and bodysurfing with their dad, while I remain in Oregon (for now) to sell the house. I have started sorting through things and packing, slowly but purposefully. Over the weekend I came across an assignment that Neil had done in middle school, during a time when he was being bullied relentlessly. It was from around the time that he had taken his yearbook and scribbled on all the faces of the kids who had bullied him, and when I looked at it later I cried because there had been so many scribbled faces. This assignment that I found was a “time capsule” that the teacher said she sends to all the students when they graduate from high school, so that they can remember what middle school was like for them. It had items like “My favorite foods” and “My pets” listed next to a blank line. It listed “Friends” with a blank line after it to write your friends’ names on.

But instead of listing his friends’ names on the line, like most kids would have done, next to the word “Friends,” Neil had written “many.” Even then, he believed that he had many friends. Even then.

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

~

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.

Everything’s a Competition

The Scene:  Interior suburban family home. A mother and her two teenage sons are seated around a wooden coffee table in the living room, playing the board game Risk. Her older son, who loves military history and geography, is rapidly gaining control of the Western Hemisphere. The mother marvels at the fact that he now has the patience to handle long, strategic board games. Her younger son, influenced by his Eastern European ethnicity and a recent interest in dictatorships, sets up Moscow as his home base and systematically conquers Asia. The mother hangs out in Africa and Australia as the two brothers conspicuously gang up on her. Secretly, she loves the fact that they are working together and considers it a bonus that the tediously long game appears to be winding down (or at least her role in it), although she has enjoyed the family time and hopes that her sons have as well. She smiles contentedly as she surrenders another territory.

Younger son: This may not be the appropriate time to mention this, but I can feel my first armpit hairs growing.

Older son (in a flat tone, keeping his eyes on the board): Mine are longer than yours.

Image credit:  virag virag