Teen Autism

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.

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!

Some of you might remember this photo from a year ago, when Nigel first said hello to his new cousin as he somersaulted in utero.

And here they are a year later! Nolan is just about ready to take off walking, and he and Nigel had fun laughing together in the back seat of the car this weekend, making silly noises. “He’s kind of humorous now,” Nigel said. “But he’s still a little drooly.”

This morning, like every other weekday morning, Nigel got on his bike to go to school, Aidan walked to the bus stop to be picked up to go to his school, and I got in my car to go to work. A few miles down the road, I pulled up to the intersection and into the left turn pocket that leads out to the freeway. I could barely see the signal because the sun was directly behind it, blinding me. I tilted my head so that most of my vision was shaded by the car’s visor, and the little red arrow was faintly visible in the thin space between the visor and my rear view mirror. A moment later I could barely make out the little arrow changing from red to green, and I blindly drove forward. I felt like I was driving into the sun.

And it struck me, as I got on the freeway, that for the past twelve years since my son’s diagnosis, that’s exactly how it’s been. That’s how it is for all of us. We are driving into the sun. There are no rules about raising a child with autism! No tried and true methods. What works for one child doesn’t work for another. Because I pursued intensive (but non-aversive) ABA treatments for my son so that we could increase his chances of learning to talk, and then medication to help regulate his behavior, does not mean that I do not accept him as he is. Because someone else does not pursue various therapies does not mean that they do not want to help their child. Because I say that my son “is autistic” does not by any means indicate that I don’t think that there is “so much more to him” than that. Because other parents prefer to say that their children “have autism” does not by any means indicate that they’re in denial. Both ways are valid - and appropriate. There are no rules with autism. We are all living with it the best way we can.

At work a while later, I received an e-mail with a link to this New York Times article. Here’s the crux of it: “Though it [Asperger's] became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.” How does that grab you? I knew that the DSM was up for revision, but I never thought that this was the way it would go. And you know what that tells me? It tells me that we parents aren’t the only ones driving into the sun. If the “experts” don’t know how to effectively define all of autism’s manifestations, where does that leave us?

It leaves us right where we’ve always been, doing what we’re doing, forging ahead even when we’re not sure if we can. Damning the torpedoes and hoping for the best. Trying everything - or not. Because the bottom line is that we have to do what feels right to us, not what neighbors or relatives think we should do. Certainly not what “experts” tell us to do. Instead, we network, we support each other and our different choices. We respect one another as parents of autistic children, and as parents of children with autism. Because whether some of us go to the left and some of us go to the right, we’re all just figuring it out as we go, trying to live our best lives. And if we all arrive at the same destination, does it matter how we get there?

It’s like with the boys and me this morning, every morning. We all go our separate ways, but at the end of the day, we are home, happy, together. We may do a little driving into the sun while we’re out there, but the day still passes, and we have the harbor of one another to see us through.

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!

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.

Nigel and Aidan come from a long line of national park enthusiasts. When I was a child, my family combed the western states, visiting nearly every national park from Yosemite to Mt. Rushmore (technically, that’s a national monument, but you get the idea). We went to the Grand Canyon three times. My mother has been a ranger at Lassen in California and is currently a ranger at Crater Lake National Park here in Oregon. For many years she was a tour guide in Yellowstone. I have taken Nigel and Aidan to all of those parks and several others.

And so, my sons were looking forward to our recent trip to the Grand Canyon (their first) as much as I was. Along the way, we stopped at Hoover Dam, per Nigel’s request. He insisted on walking half-way across the dam so that he could stand on the border of Nevada and Arizona, as you will see in the photo below. It was hideously hot, well into triple digits. We slid into our (mercifully air conditioned) rental car and connected with I-40 all the way to Flagstaff, where the boys were only too happy to leap into the hotel pool. We rose early the next morning to head to the busiest national park at the busiest time of year.

Having been to the GC before, I knew that the best way to experience it is to get down in it, even just a little. There are two trails along the South Rim that you can take. One, Bright Angel Trail, is more like a thoroughfare. You’ve got tons of people like me who want to hike into the canyon, and you’ve got the mule trains going forth and back. Not ideal conditions for two boys with sensory issues. So I took them on the Kaibab Trail, which is far less crowded and - according to a website that turned out to be wrong -not used by the mule trains.

So we get to the trailhead, strap on our hydration pack, and head out, or down, I should say. Nothing like a good hike to get the blood flowing! We have barely begun, are only fifty feet from the trailhead, and Aidan, with his vestibular hypersensitivity, stops short. “I don’t think I can do this, Mom,” he tells me. “It’s okay, honey,” I assure him. “We’re not going to be near any cliffs.” I put my arm around him and try to gently lead him forward. He does not budge. “I can’t do it, Mom!” We are five feet below the rim, and he is having an attack of acrophobia. This I had not planned for. Nigel is barreling on ahead, and I call out to him to slow down for Aidan. “Can’t I just wait at the trailhead for you?” Aidan asks. I tell him I don’t want him waiting alone for an hour and a half. Then I put him on the inside of the trail, and I explain to him that we will walk together slowly and that I will switch places with him whenever the trail switches direction. He reluctantly complies.

At every switchback, Aidan complains a bit, but he walks with me, staring down his fear. I tell him how well he’s doing and how proud I am of him as we catch up to Nigel. We are five minutes into the Grand Canyon, and Nigel has the mother of all bloody noses. As he usually does whenever he gets a bloody nose, he has smeared it all over his face. We have been on countless family hikes, Nigel has been hiking with Scouts for almost five years, and he’s never had a bloody nose on a hike. Of course now I don’t have any tissues. Of course. One small stroke of luck is that Nigel is wearing a navy blue shirt, so the blood will not glare as much, and I tell him to use his shirt to wipe his face. The blood is pouring out of his nose, it’s a proverbial faucet, so I sit him down and instruct him to pinch the sides of it. Aidan sits down next to him. I try to wipe more blood with the blue shirt.

At this point, people -other hikers - have started stopping and asking if Nigel’s okay. I mean, it looks like a rock landed on his face. I tell them he’s fine, it’s just a bloody nose. Two different parties of people stop to offer us tissues, and I couldn’t thank them enough. Who goes on a hike and doesn’t bring tissues?! Good grief, you’d think I’d never been on a hike before. So we lost about a half an hour with that. Nigel would get antsy from sitting, say, “I think the bleeding has stopped,” and we would start walking. Seconds later he’d be bleeding again, so we’d stop and sit and blot and pinch. Then we’d get up and keep walking and sit down again when he needed to. Finally the bleeding stopped for good.

And Aidan, acrophobic Aidan, continued on alone up front. I guess he realized that the trail was actually pretty safe, or maybe he just got used to it. I was shocked but knew better than to make a big deal out of it. We met up with him at Oo-Ah Point (yes, it’s called that because of the view), which he quickly surveyed, unimpressed, and then turned around to head back up. I snapped a few photos and headed back with Nigel, pacing ourselves. Aidan must have felt much more confident going up, and he was quickly out of sight.

Aidan at Oo-Ah Point

Nigel at Oo-Ah Point, with his blood-soaked shirt and tissue-stuffed nostril

About half-way up, we ran into a mule train coming down, maybe eight of them. They were in training, with blocks of wood on their backs. We stepped to the side as they passed, and I hoped that Aidan had managed okay. Soon, we reached the top and found him waiting at the trailhead. I couldn’t wait to praise him again for being so brave in the Canyon, but before I could, he said, “I thought you said there would be no mules on this trail!” I told him that I had been misinformed, and then we headed straight to the lodge for ice cream. Because really, that’s our favorite part about national parks. Bring on the heat, acrophobia, bloody noses, and mule trains. Just don’t forget the ice cream.

After ice cream, Nigel meets a new friend

at Wupatki Indian Ruins the next day

a centuries-old ball court

Boys and sticks in the desert

As an autism parent nearly twelve years post diagnosis, I (and, I’m sure, many other parents) have developed what is often referred to as “A-dar,” short for autism radar. It’s the awareness of a possible autism diagnosis through observing the behavior and facial cues of children and adults with whom we happen to come in contact. It’s not something I ever make an effort to do - it just happens. I’ll be in a public place, or a gathering of some sort, and I happen to notice something different, but all too familiar. My spine sort of tingles, and I know. Or I think I know.

A week before going to Nepal, I spent a couple of days visiting with my extended family that lives in Los Angeles County, where I grew up. My brother and sister-in-law hosted a barbeque on the Fourth of July, and, in addition to everyone’s company, I enjoyed lounging around their pool and watching the fireworks from it. We could see about a dozen different fireworks shows in the surrounding communities, all going off intermittently. It was really cool to watch, and I was happy to be there.

The next day, my brother and I got together with our youngest sister and drove out to Hacienda Heights, a city in LA County where we had spent most of our childhood. We drove by three of the homes we’d lived in, stopping to take photos of two of them. They’d both been redecorated, of course, and we were relieved that they were not in disrepair. One had had a tree in the front yard that my brother and I used to climb regularly, and it had been taken out, we noted with disappointment.  One had been a brand new home when we moved into it in 1976, and so the baby trees that our parents had planted had grown up all these years later, towering over the house.  The fact that we had now grown up, too, was not lost on us.

Then we went to the local ice cream store where I had worked during high school. It was still there! It felt weird to be buying cones from the other side of the counter, noting all the changes in the place since I’d been gone for twenty years. The chain grocery store that had anchored the shopping center was empty, out of business. But the ice cream store was still there, a little oasis on a hot day. Then we drove out to the mall where we used to buy all our school clothes while growing up, and we stopped for lunch at a Mexican restaurant that we’d loved as kids. This time, though, we had margaritas.

After lunch, we drove out to the cemetery where one of our grandfathers is buried. We couldn’t remember where it was, but we had a hunch and were able to find it. The three of us sat under a tree on a bench next to his grave and talked about our memories of him. My brother noticed a cigarette butt on the grave marker and got up to flick it away. Then we laughed as we realized that Grandpa probably liked having it there, since he was a smoker who always tried to hide it from everyone.  

When it was time to drive back to my brother’s house, he stopped for gas and got out to pump it. Sitting in the passenger seat, I began to hear some type of vocal stimming coming from the SUV filling up next to us. “Kava, kava, kava, kava,” it sounded like. A few seconds went by, then “Kava, kava, kava,” again. It was a masculine voice, maybe an older teen. I wanted to see him, wanted to see if my interpretation of what I was hearing was correct. But the windows of the SUV were dark, and I could not see in. After another minute, the SUV pulled away, and I silently wished them well.  

Seconds later, I heard it again. “Kava, kava, kava.” Obviously, it had not been from an occupant of the SUV. I turned around and looked. “Kava, kava, kava.” It was a young man selling flowers. What? I thought. What is he saying? I strained to decipher it and decided that he must be saying “Flowah, flowah, flowah.” But he was saying it so quickly and run-together, with a non-native-English-speaker accent, that I thought I had been hearing vocal stimming. I had been convinced that that’s what it was. I laughed inwardly at myself, my certainty, and my mistake. Sometimes things are not always as they appear to be. Houses are repainted, trees grow bigger or get removed, and sometimes a guy is just selling flowers.

My brother and I in front of one of our childhood homes

Like many autistic people, Nigel’s always had a hard time being around babies. He just can’t filter the crying. It’s one of the only sounds that he still hasn’t been able to filter very well because of the unpredictable nature of it. That, and he just doesn’t understand why they can’t stop. It’s hard for him to be patient or understanding because his ears are killing him. “Can’t that baby stop crying?” he’ll say when he hears one in a store. Telling him that the baby can’t help it - or that he cried when he was a baby too - doesn’t help at all. It’s not about trying to develop understanding and patience. It’s about needing relief for his sensitive hearing.

And it started early on, too. Nigel was not yet two when Aidan was born, and Aidan had an even harder time with SPD than Nigel did. Poor Aidan spent about 80% of his waking life crying, and poor Nigel literally climbed the walls while Aidan did it. In fact, one of Nigel’s first words - “cying” - was said to describe his brother. Cying = crying without the “r”. He couldn’t say Mom or Dad, but he could say cying. “Yes, Aidan is crying,” I would say, and Nigel would run out of the room.

Nigel has no memory of those days, but he still can’t handle babies crying. He knows they can’t help it, he now understands that, but he wishes they didn’t have to do it. I told him that I’m sure their parents feel the same way!

But, despite how he feels about babies, Nigel is excited to have a baby cousin. He went to see Nolan shortly after he was born, and Nigel was a little nervous, but quite receptive. Now, Nolan is two months old, and we were very happy to have him (and his mom!) come to Nigel’s graduation party this week.  Nolan was very willing to accommodate his cousin and only cried while his diaper was being changed. After Nolan was fed and happy, Nigel came over, smiled at him, and said, “Hi, Nolan. Hey, little guy.” Nolan broke into a sweet grin and Nigel exclaimed, “He likes me!” Then he said, “But I’m pretty sure he’s not ready for some Godzilla action.”

Just yawning, fortunately . . .