Teen Autism

Part of the big let-down for Nigel and Aidan not making their flight to LA on Christmas was that their dad had purchased tickets for them to see Avatar that night. He canceled those tickets and definitely planned to take them at some point during their visit, of course. However, knowing that it’s a three-hour movie, I questioned whether Nigel would be able to sit through all of it – he usually doesn’t make it all the way through movies in the theater. He often needs a break from the sensory bombardment of a movie theater and has to take a few walks during the film.

But something tells me that he’ll sit through all of this one. I know because I saw it tonight, and I was enraptured. I got off work early to go see a late afternoon show, and it was sold out on a Tuesday. So I purchased a ticket for the 7 PM show and came back later. I, meaning myself. Flying solo. I am uber-introvert, going to movies alone and enjoying it. (I’ve taken myself out to dinner before, too.) I show up at the theater an hour early to get a good seat, and there is already a huge line. Even so, I am able to sit near the center, about three-fourths of the way back, which is my favorite area. I sit down next to a guy in his twenties with a scruffy goatee and watch as the theater fills to capacity. Moments later, I realize that not only is he scruffy, he stinks. I am accosted by the low-grade, but unmistakable, scent of permeating old sweat. As soon as I make this distasteful realization, another guy in his twenties with a full beard sits in the empty seat on the other side of me. They appear to not know each other, but they both are clearly hygienically challenged. The bearded one stinks too.

Are you kidding me? I yell in my head. What are the freaking odds? This is what I get for going to the movies alone! I get boxed in by two guys who are taking some time off from bathing. My olfactory sense is completely assaulted, and I momentarily consider leaving. How am I going to enjoy the movie while constantly inhaling these noxious fumes? But I tell myself that feces and vomit would be far worse and decide to employ shallow breathing and “tune out” the BO surrounding me.

And, no, nothing magical happened during the movie with regard to the stench. I wasn’t so enraptured by the movie that I didn’t stop every ten minutes or so and still notice the air around me. But it was tolerable, if only because I enjoyed the movie so much. Without going into a whole commentary about its humanitarian/environmentalist theme, I will say that it really affected me. What struck me the most is how we, as a whole, are perilously close to losing our sense of connectedness. I drove home crying, and it wasn’t because I’d been smelling old sweat for three hours.

I got home too late to call the boys. For some reason, I desperately want to talk to them about this movie, get their take on it. It’s obvious – missing them, I yearn to connect with them. But then I realize that I don’t need the phone to be connected to them. I can feel it at my core – the constant connectedness I have with them. It is always there. I know that they are well and having fun with their dad, while I enjoy some time alone. And I’m breathing more deeply now, too.

The hardest part of waiting is not knowing how long you’ll have to wait. – Aidan, age 13

Come on, say it with me: “I will never spend Christmas in an airport.” That’s what I’d said all of my adult life and certainly believed that I never would. Then, after eight years of transporting my children 700 miles back and forth to LA to visit their father and dealing with harsh – and scary – winter driving conditions, we decided to take advantage of a new economy airline that offered non-stop flights to LAX from our little airport in Medford, Oregon. The boys were excited about their first solo flight, Nigel had been prepped about not loudly saying things like “Can’t these people just start moving?!” while waiting to de-plane, and not mentioning 9/11 to airport security, and I was thrilled at the prospect of avoiding the 700-mile drive during winter.  The only catch was that the economy airline only flew on Fridays and Mondays. The ticket cost for the Monday after Christmas was, for some reason, $100 higher (for each person) than for the flight on Christmas Day. At a little airport serviced by only four airlines, I thought, how bad could it be?

We sat there for six hours, dear reader, waiting for the fog to clear. We got there at 11:30 AM, an hour and a half before take-off, and did not leave that airport until 5:30 PM, when they finally announced that the flight had been canceled. The really maddening thing was that the three other airlines were all landing and taking off just fine, but the economy airline had stricter regulations than the other airlines. The officials kept telling us that “they’re circling,” “the pilot is waiting to attempt a landing,” and so on. For six hours. Six hours of watching other planes land, board new passengers, and take off. Six hours of crying toddlers (Nigel covered his ears a lot), monotonous recorded airport announcements about not leaving bags unattended and using hand sanitizers “during cold and flu season,” and even a boisterous youth minister who took it upon himself to try to engage everyone and loudly started singing Christmas carols right behind my head. And Nigel’s. Nigel actually handled it better than I did.

The next morning we trundled back to the airport. The fog was worse than the day before. When we stepped up to the counter we were told that they had already delayed the flight, and there was no guarantee that the fog would clear by the delayed time either. The forecast was for fog all day. We couldn’t spend another day in the airport, not even knowing how long we’d have to wait, or if they would even fly at all. We walked back to the car and I called their dad. We decided to drive and meet half-way, as we’ve done several times a year for eight years. Eleven hours in the car. No one, especially Nigel, was happy about it, but we braced ourselves and got on the road.

Of course, the day after Christmas is the worst day to drive. I-5 was two long streams of cars, northbound and southbound. Three hours into the drive, a minivan nearly merged into me. I braked, swerved to avoid it, and felt sick as fear and adrenaline coursed through me. We were inches away from being in the middle of a pile-up at 75 miles per hour. It was so hard to keep it together until the next off-ramp, where we stopped to refuel and get lunch. I sat in the restaurant calming myself, recuperating, relieved and grateful, trying to put the what-ifs out of my mind. We are truly, utterly blessed.

I called my mom, who lives near the airport, and she said that they were still socked in with fog, three hours after the boys were supposed to fly. She’d heard no planes coming or going. The thought that we would still be sitting in that airport for the second day in a row spurred me on. I felt much better knowing that we had done the right thing by driving. After we got back on the freeway, I saw a sign that made me want to joke with the boys. It was one of those green and white official highway mileage signs, and it read,  Sacramento 17, Los Angeles 391.

“Look, guys!” I said. “Only 391 more miles to LA!”

Aidan, seated next to me, did not skip a beat. “Yay! We’re almost there!”

Even Nigel chuckled in the back. “Yeah.” A year ago, he was just learning to recognize the humor in sarcasm. I think he’s got it now.

And at least, as I told Aidan, with driving they know how long they have to wait. They know exactly how many hours it takes to get from our house to Dad’s house (eleven, including a quick stop for lunch). They see the familiar landmarks along the way, they recognize the various gas stations we use. After eight years, they know every bend in the road, all 700 miles of it. And the best part of waiting, I tell them, is knowing who’s waiting for you when you get there.

One love, one heart – let’s get together and feel all right. - Bob Marley

As many of you know, this family loves Bob. All three of us. In fact, it’s the only music that we all enjoy equally. It’s our go-to music for calming meltdowns, running errands, alleviating anxiety, and taking road trips. But now there’s something else that it’s good for, something only Nigel, with his keen observation, could have noticed.

The three of us were out running errands yesterday, singing along to Bob in the car. Between songs, Nigel commented, “This music is the perfect Christmas music – because it talks about peace and love.”

I couldn’t agree more. Beats the hell out of “Jingle Bells.”

From our house to yours, wishing all of you a beautiful holiday filled with the blessings of peace and abundant love.

“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

- Merriam-Webster’s Dictionary

Please join me at Hopeful Parents today to see what else that word means to me.

I am relieved to report that I am almost back to normal, after being sick for a full week. I haven’t been that sick in over eight years! In recent years, I’d been guilty of taking my health for granted – you know how when you’re well, you sort of forget what it’s like to be sick? Well, I do, since I’m not sick that often. Let me tell you, I will definitely be more conscious of my good health from now on.

But something else happened while I was sick, something I hadn’t expected. Included in all of the wonderful get-well wishes I received from my friends and family (thank you, everyone!) was a little advice in Carrie’s comment:  “. . . in the meantime, try to enjoy the down time!” It’s not something I’ve ever thought of doing while sick; it just either didn’t occur to me or wasn’t an option in the past, when the boys were younger. And granted, I still had to drag myself out of bed this week to get them off to school, pick them up, and make their dinner.  But aside from that, I actually took it easy. It’s sad how I have to get really sick before I force myself to slow down – because by then it’s not a choice. And so, I found myself with a little down time. I felt pretty lousy during it, but at one point I just sat on the couch, wrapped in my soft, warm robe with a down blanket over that. I drank a cup of tea. And I did nothing else. I just sat there. What an experience!

I just sat there and tried not to think about much of anything, like some of my sporadic attempts at meditating (which I haven’t done for a very long time). Thoughts would come, I would acknowledge them, and let them go. Thoughts of Nigel’s future, of my own, and how intertwined they will be. But the great part was that I didn’t attach any emotions to the thoughts, which was very different for me. Usually all of my thoughts have emotions attached to them. I can easily get emotional about things that have never even happened, just by thinking about the possibility of them. But somehow the illness gave me a sense of distance – a bit of a novelty, I must say.

So I rested. I read. I drank a lot of herbal tea. I forced myself to stay away from the computer. For the first time ever, I read the current National Geographic issue before the new one arrived (barely – the new one arrived today and it looks amazing). I noticed that National Geographic does not use a hyphen in “email,” so now I feel justified in not doing so. Who knows if I would have noticed that had I not been sick? All these hidden benefits – down time, thoughts without emotion, proofreading insight. I’ve been missing out.

But now it’s back to the grind – and Christmas a week away, no less. Fortunately, because I had pushed myself prior to getting sick, I have nearly all of my shopping done. And although I’m not completely 100%, I feel calmer than I did a week ago. I feel sane. I feel like I’m ready for the busyness of having holiday guests, cooking and baking, and getting the boys ready to go to LA to visit their dad. A lot to do, but I am rested and ready. I didn’t see it coming (getting sick) and thought I would totally fall behind, but it turned out all right after all, as things often do when you don’t fight what is. Sometimes, you get the rest you need, and you might even learn something while you’re at it.

Ugh. Sorry, gang, but I am sick. I usually go a year or more without getting sick, and when I do, it’s brief and relatively painless. I credit that to a mostly organic diet. But this time the bug really got me, probably from burning the midnight oil too much lately. In any case, it’s definitely going to be a few days until I feel human again!

And what’s the meaning behind the phrase “under the weather” anyway? I know I could Google it, but I’m too sick. Meh. Hope all is well with you and yours!

Sometimes, as a mom blogger, I get the feeling that my kids somehow tap into the wavelength of a post I’ve written – before I even post it. And then they come to me and totally disprove whatever I’ve written about them.

For instance, the night that I wrote “Polite Conversation,” about Nigel using lengthy delayed echolalia at the dinner table one evening, he came into my office – minutes before I posted it – and began what was undoubtedly the most incredible conversation I’ve ever had with him.  I honestly didn’t realize that he was capable of a serious back-and-forth discussion regarding intangible ideas for over half an hour. And he revealed so much more about himself during the course of it.

He started off by running into my office, eyes wide. “Mom! Have you heard of something called ‘home births’? Because I think I want to have my children that way and I wanted to see what you thought of it.”

Definitely didn’t see that coming. “Yes, I’ve heard of them. But I think that you should talk to your wife about it first. And I don’t think you need to worry about that for a long time.”

“You mean when I’m 18?”

(!) “No, I think that’s a bit early. You need to have a good job and a home for your family before you start thinking about having children.”

“20?”

“I think that’s a bit early also.”

“Well, I need to be prepared.” That’s six years of Scouting talking.

Then he sat down on a chair that’s across from my desk, and the topic changed to dating. He mentioned, quite wisely, that he needed to have a girlfriend before he could have a wife, and that there didn’t seem to be any girls at the high school who really understood him. He said that some of them were nice to him, but he was worried that they might not be sincere. “What if they ask me out on a date, but they’re just trying to trick me? How will I know the difference?”

My heart ached to hear him say it. He already knows that he is vulnerable to this. I told him that one thing that will help is to be friends with a girl before dating. And then, I pulled out my new copy of The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron. It had just arrived from Amazon mere days before, and I had been waiting for the perfect opportunity to tell Nigel about it. I couldn’t have planned this better if I tried.

He seemed interested. I asked him if he wanted to read it himself or if he wanted us to read it together, and he opted to read it on his own. I was thrilled by his positive response! Somehow I had tapped into what he needed – before he even asked. But of course, we autism parents do that all the time, especially when our kids can’t ask.  

We talked some more. We conversed. He made eye contact, he posed ideas and waited for my response, and then he responded to my ideas. Sometimes he added even more to his response. His voice inflection was perfectly appropriate, he tried new words and asked me if he used them correctly, he was fully engaged. My heart was bursting with joy, because for many years I didn’t know if such conversations could ever take place.

Then at one point he leaned forward in his chair and said, “I think I’m different from other autistics because I want to be a normal man and have a wife and family.”

I tried not to let my face show too much emotion, but lately my son has been causing me to tear up a lot. “Oh, honey. Yes, your autism makes you different and makes some things more difficult to achieve, but don’t ever think that you can’t be a normal man if you don’t have a wife and family. Whatever you do with your life, you will always be a normal man. In fact, better than normal.” I got up, walked over to him, and gave him a hug, which he stiffly accepted (the usual for him).  

He left then, book in hand, and I couldn’t help but cry. I always think about my son’s future and how different things will be for him. But what I hadn’t thought about is the now unmistakable fact that he is also thinking about his future, his adulthood. And then I remembered something that I had forgotten to tell him. Something I wanted to make sure he knew. I dried my eyes and walked to his room.

“Nigel, I just wanted to tell you that when you’re an adult, I’ll still be here to help you, to talk with you. I’ll always be there for you.”

He paused a moment, taking that in. Then he said, “Good, because I don’t know how to get grants for college.”

Oh, honey. I got you covered.                                                                                

The Scene:  Interior of a small SUV. It is night. A mother is driving her teen son back to the video store where he had just rented a video game. They were half-way home when he discovered that the disc inside the case was not the correct game format. The mother thanked him for checking before they got all the way home. She found a place to turn the car around and started heading back. They are driving along, doing about 40, when suddenly the mother realizes that a pair of headlights is coming straight at them. They will collide in seconds. The mother slams on the brakes, praying that the other driver does the same. She hopes that the big truck behind them sees what is happening before it slams into them. The headlights slow; the driver has seen them. He or she stops, backs up, and turns into the nearest driveway. It seems to take an eternity. The truck behind the mother and son slows down and does not hit them. The mother, shaking, begins to drive again. A few moments pass.

Teen son (calmly observant): We are the luckiest family in the world.

Mother (choking back tears): Yes we are, honey. Yes, we are.

‘What ho!’ I said.

‘What ho!’ said Motty.

‘What ho! What ho!’

‘What ho! What ho! What ho!’

After that it seemed rather difficult to go on with the conversation.

-P.G. Wodehouse, My Man Jeeves (1919) ‘Jeeves and the Unbidden Guest’

Yesterday, Aidan’s best friend of seven years was visiting at our house. In the spring, he moved three and a half hours away, so the boys don’t get to see each other very often. They talk a lot on the phone, but Aidan always looks forward to getting to spend some time with his friend when he’s in town. And yesterday, spur of the moment, he called right as Aidan was getting home from school. “I’m in town visiting my dad,” K said to me on the phone. “Is it okay if I come over for a bit?”

So Aidan and K had a blast hanging out and playing video games together. I threw in a pizza for dinner and called all three boys out to the table when it was ready. Nigel came out last, fresh off a movie in his room. He knew that K was visiting and greeted him as he sat down. I sat about fifteen feet away in the living room, reading.

They had barely taken two bites, presumably, when Nigel launched into some lengthy delayed echolalia. (Technically, these days it’s called ‘scripting,’ but ten years ago, when it was his primary means of communication, we didn’t have that terminology yet. Or at least I didn’t. His therapists called it ‘delayed echolalia,’ a term which has stuck with me.) I had no idea what was going on with him. He kept going on, rapidly reciting something in a strange tone of voice. Aidan and I, glancing at each other, were stunned by this monologue. Nigel often still says single lines from movies, or a couple lines of dialogue run together, but nothing this lengthy. Poor K was trying to nicely respond, to acknowledge Nigel and converse with him. He’s been at our house so many times over the years that he’s quite used to Nigel’s different way of communicating, but he wasn’t sure what to make of this. I decided to gently intervene.

“Nigel? What are you saying? You need to use your own words, okay?”

“I’m just making polite conversation!” he shot back. I’d be willing to bet money that this was also a line from something, just by the way he said it.

“When you’re having a conversation, it’s best to use your own words so that people know what you’re talking about.”

“You don’t need to say things from movies,” Aidan added gently.

“It’s not from a movie! It’s from a book! Alice’s Adventures in Wonderland!” he growled.

“Okay, well, how about if you just eat now?” I suggested. I really didn’t know what else to say. I knew he’d been reading that book (the original) for several weeks, but I had no idea he’d been memorizing it. And why the sudden inappropriate monologue? He’s done much shorter versions (of delayed echolalia) in the past when we’ve had multiple people at our house, or in unfamiliar situations, but I couldn’t figure out why he needed to do it last night. Was it a sign of a mini-regression? A conversational test on someone familiar? What gives?

I gave it a lot of thought, and then it hit me. It’s because he’s autistic, of course. His language development was extremely late and labored. The art of conversation is something that may always be out of his reach. Yes, he can communicate. At this point in his life, he usually does it fairly well. But communicating and conversing are two different skills, and the skill of conversing is something with which he will most likely continue to struggle.

We often say, “Two steps forward, one step back,” or a variation thereof.  I could choose to look at last night’s conversation attempt as a step back. But in reality I think it was sort of a side step, a lateral move. He was testing the waters. In fact, I talked to him about it later when we were alone, and he confirmed my theory.

“I just wanted to try something new. I thought it would be fun. K seemed to handle it fine.”

“Yes. That’s because he knows you really well. But it’s probably not a good idea to do that with people who don’t know you very well, because they won’t understand.”

“I just don’t feel like I could give it up.”

“You don’t have to give it up. Just try to only do it around people who know you well. Okay?”

“Okay.”

I think maybe it was a step forward after all.

“Mom!” Nigel calls from inside the house. “Don’t forget we have to go to the animal shelter!”

“I won’t – I’ll be in in a minute!” I am hanging up the last strand of Christmas lights around the front roofline of our home and can barely feel my fingers. It is late afternoon, and there is still frost from this morning on all of the vegetation in our neighborhood. Baby, it’s cold outside. Cold and dry.

I climb down from the ladder, put it away, and plug in the lights. Then I step back a bit to view my handiwork. Hmm. Strange how those eight bulbs worked just fine when I tested the lights forty-five minutes earlier, before stringing them up. Oh, for crying out loud. Sometimes I wonder why I bother.

I run in the house and wash up, calling out to Nigel to see if he’s ready to go. Every Sunday afternoon for the past several weeks, we’ve volunteered at our local animal shelter as part of a community service requirement for his next level of Boy Scouts. The animal shelter welcomes under-18 volunteers as long as their parents accompany them. And so, we both go.

Initially, I resisted this time taken out of my much-needed and usually full weekends. How could we – I - possibly fit it yet another activity? How could I possibly get everything done? When was I going to squeeze in some down time? I already volunteer for the Autism Society of Oregon and various other Scout activities. Furthermore, we have pets at home to take care of! I didn’t have time to volunteer to take care of more animals! I did realize, of course, that this was the perfect opportunity for Nigel to get in his community service time for Scouts. The animal shelter is only a five-minute drive away, and Nigel loves animals. I decided to grin and bear it.

We get in the car and drive to the shelter. I laid down the law before we even started there four weeks ago: no new pets. No matter how cute they are, no matter how much you love them, no matter how long they’ve been at the shelter. Nigel had agreed. But after a month of being surrounded by cute kitties in need, Nigel starts saying things like, “I wish we could afford to take you home with us” when he’s holding a cat and I’m in earshot. I remind him of his irritation with cleaning the cat litter for the cats that we already have. He considers this a moment.

“I know!” Nigel exclaims. “I want to start my own animal shelter! That way, I can have lots of cats and have employees and volunteers to help take care of them.”

 So. We’ll just add that to the list of potential careers for my son, right up there with inventor and astronaut.  But then I realize that he’s absolutely right. He loves animals and wants to help those in need. And that’s exactly what he told me when I asked him why he wanted to start an animal shelter. I said that we could certainly look into it.

Meanwhile, my grin-and-bear-it time has turned out differently than I thought it would. I find that while I’m holding and petting the adult cats and playing with the kittens, I’m not thinking about anything else. I’m not stressing about the things that I’m not getting done and the time that I’m losing. I know! Can you believe it?! I just sit there and relax! There’s no computer, no phone, no calendar, no errands. It’s actually just what I needed.

The hour passes quickly, and we sign out and go home. When we pull up to the house, Nigel comments in a dry tone, “It seems like some bulbs aren’t working.”

And the best part is that it doesn’t even bother me.