Teen Autism

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 . . . 

Betcha didn’t know! June is National Adopt-A-Cat Month!

Did I hear a ‘so what?’ I know. Many people are allergic to cats. Many people prefer dogs. Many people prefer fish, rodents, or reptiles. And that’s okay. Because any pet will teach a child responsibility, compassion, how to handle death, and more. Pets also bring comfort, amusement, and can present a calming influence. I know. Every day I see the benefits of having pets - with both of my boys.

Over the years, we’ve been the proud humans of five cats, a dog, a rat, a mouse, and several fish. Currently, we share our abode with three wonderful cats, two adopted from local shelters and one from a neighbor. There’s Midnight, our sleek black male shorthair, Sheba, our pretty black-and-tan tabby (see her here!), and our medium-haired little gray girl, which Nigel named Winter (see below). The boys love all of the cats, but Winter’s the newest, so she gets the most attention. Nigel will hold her and walk through the house, saying to anyone in earshot, “Look at her! Just look at her! Look at how cute she is! It’s like she jumped straight out of a painting.” Then he snuggles his face into hers and says, “If your parents could meet you now, they’d be so proud of you!” Aidan loves her just as much. He bursts through the front door when he gets home from school every day and says, “Where’s Winter? Where’s that little princess? I have to pet her!” And then he squeals when he finds her. They are in love with this cat.

And since she’s not their first cat, they’ve learned about death from the ones that came before her. We had one hit by a car a few years ago, and as sad as it was for the boys (and me), our cat’s death helped prepare them emotionally for their great-grandfather’s death several months later. And when Nigel’s very own pet mouse, that he kept in his room and was responsible for entirely, died last year, he handled it with more maturity than I would ever have expected.

Oh, yes, they grumble and complain about having to empty the litter box. They “forget” to do it. But then they see what happens when they “forget,” and they realize that their pets are dependent upon them for their care. And they learn about treating their pets with kindness and respect. Sometimes, this carries over into their dealings with people. At least, that’s the idea.

It’s also worth noting that people on the spectrum can often relate to animals easier than they can to people, such as Temple Grandin with cows or John Elder Robison and dogs. I definitely see this with Nigel. He was playing with Winter a few days ago, pulling a string through the house and laughing as she chased it. After some time, he put the string away and went to the kitchen to get a snack. Then he went to his bedroom to get something, and after that he went to the bathroom. Winter followed him closely the entire time, running right alongside him like a little gray shadow. After a minute of this I heard Nigel say to her, “There’s no way of escaping you, Winter, but I’m glad of it!” He said it in such a sweet, loving tone, with more inflection than he’s ever used when talking to people.

*sigh*  A boy and his cat. Love at first purr.

“You can go your own way” - Fleetwood Mac

Right after our highly successful trip to Oregon Caves this past weekend, we decided to drive another hour and a half that afternoon to Redwood National Park on the northern California coast. Apparently a scene from Walking With Dinosaurs had been filmed there, so Nigel had to act out the part with the sauropodlet (as Nigel calls baby sauropods) eating fern fronds.

At any rate, the boys and I loved roaming among the quiet, steadfast giants, and Nigel had fun climbing on the trunks of the fallen. Not wanting to violate any park rules, I checked for signs forbidding climbing. I didn’t see any, and Nigel was being careful, so we went on our way. At the end of the walk, we found some signs facing the other direction. I turned around and read one of them. “Stay on the trail,” it said.

At the end?! Why would they wait until the end of the trail to tell visitors that? I looked around and then it hit me. We had begun the trail loop on the wrong side. We went in through the out door. We finished where others started. But we started where others finished.

That’s how it is when autism is in your life, for the ASD kids trying to figure things out as well as for their parents. We do things differently. Our path is not the same as others’ paths. Sometimes we have to approach things differently to understand them. It may not be the expected way,

but somehow we get through it.

And sometimes it helps to just stop, take a breath, and look up.

For several of Nigel’s early years, both before and after his autism diagnosis, his dad and I thought that he was afraid of the vacuum cleaner. It wasn’t until we learned about sensory issues - and noticed that Nigel had the same “fear” of leaf blowers, blenders, food processors, and air hand driers in public restrooms - that we began to realize that he didn’t fear these objects. He could not filter the loud, invasive sounds they made. The sounds were so painful to him that he learned to run to a different room if he saw the things that produced them. And when he couldn’t run to a different room, he would scream. He wouldn’t even cover his ears because he didn’t know how. It actually took him a couple of years to learn that he could do that when he heard a loud sound.

As the years went by, covering his ears became second nature to him. And slowly he learned how to filter the sounds that were previously so agonizing for him. But as his sensory issues became more manageable, he developed real fears to take their place. I’ve mentioned before that he is afraid of bees and other flying insects, and a close second, also in the flying category, are bats. Yes, my son, the zombie movie aficionado, is afraid of bats. And this, in addition to Aidan’s mild claustrophobia, has prevented us for years from going as a family to nearby Oregon Caves National Monument, which I enjoyed as a child. But I am nothing if not determined. Every year for the past five years I’ve tried to chip away a little at the bat fear. One year I bought Stellaluna. Last year for homeschooling we studied bats on Wikipedia, something that Nigel likes to refer to. This year I found my old Oregon Caves pamphlet which distinctly says that the bat population “peaks in the fall when bats swarm to breed,” and told him that both times I had been to Oregon Caves, I had not seen a single bat. So this year, in the spring, he was finally ready. And Aidan decided that since Nigel was going to stare down a fear, he was game to do the same.

We arrived early so that we wouldn’t have to wait long for our tour, and started off with our Ranger tour guide and a group of fifteen other people. We spent over an hour inside the cave of amazing calcite formations, and both boys did really well. At one point, Nigel got a little nervous because the Ranger mentioned that there might be a bat in one of the rooms up ahead, and Nigel growled at another visitor to shut off his camera so that the flash would not upset the bat, causing it to fly into his face. But Nigel quickly regained his composure and proceeded into the room, and I was so proud of him that he went ahead in spite of his fear. Much to our relief, there were no visible bats, and Aidan was fine until the very end, when the cave started to get to him. But he stayed calm, and they both completed the tour. Yes, you read that correctly - they both completed the tour! No panic attacks! No screaming, yelling, or bolting! No whining even! I guess it was like teaching Nigel to cover his ears when he was little - it just took a few years of teaching and preparation. When he was ready, he was fine.

As a treat, I took them to get burgers for dinner at a restaurant. Right after our food arrived and we started digging in, the opening lyrics of a Queen song began. Nigel stopped and listened. “Hey - what’s this song?” he asked.

“‘Bohemian Rhapsody,’” Aidan answered.

“No,” Nigel said, still listening. Then he remembered. “It’s ‘We Are the Champions.’”

“Oh, yeah,” Aidan agreed. (I just discovered while writing this post that last week this song was performed on the season finale of American Idol. The boys and I do not watch this show, so they were trying to remember from hearing one of my old CDs years ago.)

Then Nigel looked at me, making full eye contact. “This is the perfect song for us to hear tonight. You know - because we are the champions of the cave.”

I just gazed into his gorgeous medium brown eyes that I seldom see directly and tried to choke down my burger. “Yes,” I said. “You guys are the champions of that cave.”

Then Nigel quietly sang, “We are the champions . . . of the cave.” And my heart swelled with pride.

 ”Paradise Lost” - the room where the bat was supposed to be.

Nigel and a new friend!

End of the tour - jacket and hood completely off!