Teen Autism

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

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

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

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

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

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

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

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

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

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 Nigel 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 Nigel’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 “Nigel 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 Nigel to his last Scout meeting, where they had a goodbye party for him. Being in this particular Scout troop has been so beneficial for Nigel, 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 Nigel’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 Nigel. When the party was over and it was time to leave, the Scoutmaster said some generous parting words about Nigel and his progress as a Scout, and then he asked Nigel 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, Nigel 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, Nigel.”

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 Nigel 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,” Nigel had written “many.” Even then, he believed that he had many friends. Even then.

Happy Father’s Day, everyone! I’m over at Hopeful Parents today, writing about - who else? My dad.

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 (keeping his eyes on the board): Mine are longer than yours.

It seemed like it came from out of nowhere, and in some ways, it did. But lately I’d been noticing ambulances around town, even those without their sirens and lights on. And three weeks ago I commented on my friend Elizabeth’s beautiful post that the only child I’d witnessed having a seizure was not my own.

A few days ago, Nigel had his first tonic-clonic (formerly grand mal) seizure. He had been on the couch in the living room watching a movie, and I was reading in my office. I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

I was terrified. My legs started shaking as hard as Nigel’s. I pulled them out from under the coffee table and placed them on the couch and shoved the blanket out of the way. With dread I realized that he was having great difficulty breathing and yelled out to Aidan to call 911 and bring me the phone. The dispatcher kept me calm while waiting for the ambulance to arrive. Nigel’s breathing alarmed me, but after the convulsions stopped, it seemed to come a little easier, although it was still ragged and rapid. The EMTs arrived, checked him out, and tried to insert an IV (which he fought off, even in his semi-conscious state).  Then they placed him on a gurney and wheeled him out to the ambulance.

I rode in the back with Nigel and Aidan rode up front. The EMT in the back asked Nigel questions and he answered them.  Later he would tell me that he had no memory of the ambulance ride or the first two hours in the hospital, even though he was conscious and speaking. I sat there behind my son as he spelled his name in the ambulance, berating myself for yelling about the banging when he was having a seizure. Of course, there would have to be some element of the experience for which I would feel guilt. How long had the seizure gone on before his legs got stuck under the table? Why was my first inclination to yell about it?

Three hours later, everything checked out clean at the hospital (the brilliant ER doctor said that because the CT scan was clear, he might not have had a seizure. Um, yeah, he really did. Guess you had to be there, eh, doc?), and after waiting almost an hour post-discharge for a cab, we arrived home past 2:00 AM. I put the boys to bed and tried for at least an hour to fall asleep, but each time I heard a noise (usually because of the cats), I jumped out of bed and went to check on Nigel.  My mind kept fixating on questions I had about seizures and how they would affect Nigel’s life. What does this mean for his future? What if he has one while riding his bike? Or in the shower? Where do we go from here?

I woke up exhausted and called the doctor’s office. His regular doctor was not in, so we saw another doctor in the practice who recommended a referral for an EEG and MRI. But, with Nigel moving to L.A. next week, there’s no point in receiving a referral here. We’re on our own to find one there as quickly as possible.

Except we’re not on our own. We’re part of this amazing and wonderful online community of families with special needs. So I contacted Elizabeth. And not only did she answer my questions and recommend her daughter’s specialist, she calmed my fears and provided empathy. And I am so grateful. I couldn’t help but remember a post I had written over two years ago about my fear that Nigel might develop seizures in his teens. It was only the third post I had written, so it didn’t receive any comments, but in it, I had asked for other parents’ experience and advice about seizures. And now, right when I need it most, I have it. We are truly blessed to be a part of this community.  

I still have many questions, most of which we won’t know the answers to until the testing is done, and even then, the results may be inconclusive. I still have a lot of anxiety. My legs are still sore from being so tense during the whole experience that night. I still have fears, but I’m trying not to focus on them. I’m trying to focus on the good and move forward, knowing that we’re not on our own.

Well, I finally read it - Cowboy & Wills. I’d put it off long enough. Not because I didn’t want to read it, but because I knew it would hit close to home. And some of that stuff is hard to relive. By “stuff,” I mean the younger years - when you can’t leave the house because your child’s sensory issues are so severe. The overwhelming years of constantly going to therapy and doctor appointments and special education team meetings. The difficulty of dealing with ignorant people. It was all there. But there was more “stuff” there that I hadn’t even realized.

Cowboy & Wills, by Monica Holloway, is the touching memoir of a boy with autism and his dog. When Holloway’s son, Wills, is diagnosed with autism, she finds comfort by acquiring various pets - fish, hamsters, hermit crabs, a turtle, a rabbit. I laughed aloud reading her descriptions of their antics! Before long, Wills indicates his desire for a dog, and Holloway starts researching. Cowboy makes her appearance, and the miracles start happening. Wills begins sleeping in his own bed (with Cowboy), becomes more comfortable and sociable at school and with new people, starts swimming in the backyard pool, and even says his first “I love you.” All because of Cowboy. It’s a book that’s both sweet and funny, sad and happy, and all about love and hope.

But for me, it was more than just a good read. It struck a chord with me in a way that I never expected. In a scene when Holloway is taking her son to his first OT appointment, out of the blue he asks her, “What’s wrong with me?” He asks it in the same way and at the same age that my son asked me the exact same question. It threw me back to that heartbreaking moment, back to being shocked that he could formulate the words to ask and trying in a split second to figure out how to answer him. But it was also the moment of my calling - when I first decided that I would write about autism. It was good to be reminded of that.

I cried at the ending, of course, but at some point I realized that I was also crying about something else. It finally dawned on me that I never acknowledged my feelings and my fears all those years ago when my own son was diagnosed. I just accepted it and got down to the business and busyness of pursuing his therapies and just getting through the day. I suppose it was mainly because I also had a second child with special needs and didn’t have the time or energy to pay attention to my own emotions. It’s amazing how you can shove those things down for so long and then they just surface at unexpected times, sometimes years later.  It was definitely something I needed, without even realizing it. A lovely story and on-the-fly therapy - together in one good book!

This isn’t the first time I’ve moved out of state. And it’s not the first time I’ve had to downsize either. But something about this time is so daunting that I haven’t even begun to pack. The boys are leaving in less than two weeks to be with their dad in Los Angeles, and I’m leaving in less than two months to move to Not-Sure-Yet. Now that Nigel won’t be able to go to the special school we wanted him to attend (at least not in the foreseeable future), I have to get to L.A. sooner than originally planned so that I can get him set up at his new school, which is called Not-Sure-Yet High. At least we have it narrowed down to a couple, and the one we choose will of course determine where I get an apartment. Yes, that’s right - apartment. I haven’t lived in an apartment for ten years. The boys were much smaller then and had fewer things! And I’m downsizing a four-bedroom house into a two-bedroom apartment. That should be fun. Time for creative packing! Ever played the “I don’t know, honey, it must have gotten lost in the move” game? And no, the house hasn’t sold yet. This - this planning and packing and changing our lives - is truly an exercise in belief.  

So, due to our impending move, for the past few weeks the boys and I have been the honored recipients of various invitations for get-togethers, barbeques, and goodbye parties. Last month, we had lunch with my 92-year-old grandmother, the boys’ only living great-grandparent. Last weekend, we went with my mom, sister and brother-in-law, and my little nephew to our spot on the coast where we’ve been going every year for nine years. It’s been bittersweet, of course. On the one hand, I am excited to get going, to get a move on (ha! So that’s where he gets it!) and finish the process I’d begun six months ago, when we were fogged in all day at our local airport and I said, That’s it! I’m done! This was also after an extremely cold December, complete with daytime temperatures in single digits, which I’d never experienced in my twenty years of living in southern Oregon. But it wasn’t just the weather, of course. It was a combination of factors, all of which carried far more weight than the weather. And it’s time for those factors to change. On the other hand, it’s so hard to leave our life here behind, and the people in it.

Last night, the boys had their long-time friends over for one last sleepover. I bought two huge pizzas, soda, ice cream, chips, and stuff for homemade waffles in the morning. The boys walked through my front door, all of them now much taller than I am, greeted me in their deep voices, and loped out to our game room, where we’ve had sleepovers for the past seven years. I have watched these little boys become young men!!  (Okay, must not cry on the keyboard now.) And such wonderful young men they are. These friends of Nigel’s have stuck by him through unnerving meltdowns and endless movie echolalia. They were there for him when I had to homeschool him and they were there for him when he returned to regular school. They have given him the gift that every person needs and deserves - friendship. Words cannot express my gratitude. I love these boys.

There are more goodbye parties to come - Tuesday at Boy Scouts and next week at Nigel’s special education classroom. Nigel’s Scoutmaster, who’s known him for over six years, has more patience than anyone I’ve ever met, and Nigel’s special education teacher has put forth every effort to meet his needs, just in the nine months that she’s known him. The facilitator of his social skills class, who has known him since his non-verbal days, actually created the class two years ago just for him. Just for my son, because that’s what he needed. And there are so many others. I sit here tallying up all the people who have touched our lives, who have shown so much kindness to us, even those online whom we have not yet met. It overwhelms me, this downpour of love. We have been truly blessed.

The best part is that, in thinking of all the wonderful friends and family members we will miss, I have been reminded of what’s really important. It’s the people in our lives. It’s not where I’ll live, where I’ll work, where my kids will go to school, and making sure that everything is planned, that we know where every step takes us.  The Not-Sure-Yets will become certainties soon enough. The packing will get done when needed. Somehow it all works out. What really matters is how we love, and how we are loved. We will go forward into our new environment surrounded by the warmth of those who have cared for us, and will continue to from across the miles. And I’m certain that their warmth - their love - will see us through.

Christmas ‘08: my sister (and nephew on-the-way!), brother-in-law, Nigel, me, my grandmother, my two aunts, and my mom. Photography by Aidan!

As some of you already know, Carrie Wilson Link often interviews authors about their books and the personal experiences behind them. She always asks thought-provoking questions that reveal more about the authors than we would otherwise know. As an avid book reader, I’ve always loved her interviews. And I’m thrilled to announce that I am today’s interviewee! Carrie asked some probing questions about Slip, my novel that was recently published, and how my personal experience fits in with both the subject matter and the writing of it. I feel honored to have been interviewed by her, and I invite you to take a look by clicking here. Enjoy! And thank you, Carrie!

The Scene:  Sunny but cool day on the Oregon coast. Waves crash on the shore, birds call as they fly overhead, and a few people walk by with their dogs. A small waterfall rushes out of a fern-covered hill at the back of the beach. The water gurgles over a rocky area and forms a little creek that meanders out to the sea. Two teenage boys, their uncle, and a friend of one of the boys are building a dam out of logs, dried grass, and sand. Nearby, a woman watches as she reclines against a large driftwood log and enjoys the sun.  She is glad that the boys are outside instead of sitting around in the cabin they had rented for the weekend, watching more DVDs than most people could watch in a fortnight. The dam is working; a pond forms as the water collects, and the eldest teen boy stands in it while pouring sand out of a bucket.

Teen boy (calm, even voice):  This water is damn cold.

The woman, his mother, thinks it is probably a line from one of the movies he had watched the previous night  - The Abyss - which involves a lot of cold water. Her son repeats the line a few times, and the mother realizes that he is most likely expecting a response from her.

Teen boy (fourth time, in same tone): This water is damn cold.

Mother: Yes, I’m sure it’s pretty cold.

Teen boy (same tone as before): This water is damn cold [gestures to the dam wall, then smirks]. Get it? ‘Dam cold’?

I just finished reading an amazing book called Fearless Nest: Our Children As Our Greatest Teachers. So many of the beautiful stories in the collection resonated with me. And one thing the book really has going for it is that my friend Carrie is one of the contributors! In addition to that, it got me thinking about what I have learned from my children. What I’ve learned from Aidan deserves a post of its own, but for today, I’ll write about what I’ve learned from Nigel.

It’s the power of belief.

But I’m not just talking about the belief I have in his potential, or that he would learn to talk, that he could be mainstreamed in school, that he would learn to regulate his behavior. All of that involved a tremendous amount of belief, and, for that matter, it still does. Because I truly believe, in spite of all his challenges both past and present, that he will be able to navigate adulthood with some degree of independence. Most of all, I believe he will find people who will appreciate him, and he will have friends and be happy. Even if his connections aren’t typical, I believe this with all my heart.

And I believe that he will follow his dreams in adulthood, because he already does. Since his early years he has been a huge Disney fan. He loves the characters so much that he thinks of them as friends. In fact, his stuffed Tigger prompted him to speak one of his first words and start showing some imaginative play. These days, he owns almost all of the Disney movies, animated and live-action, the older ones as well as the newer ones with Pixar, and he rotates watching them. These movies have taught him how to talk, how to interact with people, and how to tell a story, among many other skills. But mostly, they comfort and entertain him. They are a big part of his life and he loves them.

For a few years now, he has talked about a movie idea he has that combines all of his favorite animated Disney characters. I’m not clear on the plot details, but it involves him becoming an animated character and going into their world (a la Roger Rabbit, I suppose) to help save them from a new Disney villain, worse than all the Disney villains combined. A few weeks ago, he wrote a letter to the Disney Corporation outlining the plot and asking if they would be interested in his story idea for a future film. He typed it on his computer, printed it out, folded it up, put it in a #10 envelope, and addressed it by hand, which is no small feat with his dysgraphia. He sealed the envelope and came to ask me for a stamp. I mailed it the next day, not knowing what he had written, but hoping that it was coherent enough for them to at least send him a form letter thanking him for his interest. I told him that the Disney Corporation probably receives hundreds of pieces of mail daily and that it might take several weeks before he received a reply, if any. I tried to let him down easy, gently prepare him for disappointment.

But he believed.

My boy believed so strongly that he would receive a reply within two weeks. After the first week, he said to me, “It’s been a week now. My response from Disney should be arriving soon. Let me know when it comes in the mail, okay?” And I again reminded him that Disney may not be able to answer every letter they receive, etc. Still he believed. And I suppose I should not have been at all surprised when, on day eleven, a letter arrived from the Disney Corporation addressed to my son. He was shaking as he opened it, saying, “I knew they would reply!” And they did, within the timeframe that he believed they would. It was such a generous response - not a form letter at all. The kind soul who had opened my son’s letter had taken the time to write a personal response. She told him that they would probably be interested in his idea (he loved that part!), but diplomatically - gently - explained that due to legal restrictions, they could not pursue it. And Nigel handled it very well. He said that he understood and was okay with it. He got his response, addressed to him on Disney letterhead, and that was enough for now. His belief came to fruition.

And what do I believe? As we go forward with our out-of-state moving plans, I find myself faced with several huge unknowns, especially now that Nigel won’t be attending the special school we’d hoped for, at least not for a while. I don’t know where the boys will go to school. I don’t know when my house will sell. I don’t know where we’ll be living. I don’t know what job I’ll have. There is so much I don’t know. But Nigel has taught me to believe. And I believe that everything will work out as it should. I believe that all of our needs will be met. I believe that all that I seek is seeking me. I believe that all will be well. And that is enough for now.