Teen Autism

First and foremost, thank you all so much for your thoughts, your prayers, and your love. Aidan’s surgery yesterday was successful, and he is already recovering remarkably well. I feel truly blessed to be a part of such a caring community of people. Aidan was in good hands yesterday, and even though I was relieved to see him after surgery, I knew that he would be all right.

Nigel, it would seem, was not as confident. I made it a point for him to not go to school yesterday so that he would be at the hospital with us for a few different reasons. One, I knew that he would be anxious all day long knowing that his brother was in surgery, and if I had him go to school, his behavior would have reflected that. In the past, he has not done well at school when Aidan was just home with an illness. Nigel would not have done well at school if I had sent him. Two, I wanted Nigel (and Aidan) to know that when family members go to have surgery, their family members go with them. We have to be there for each other. Lastly, I wanted him to experience being in a hospital for several hours and know what that’s like and learn to handle it.

We got to the hospital at 7 AM to check Aidan in, and his surgery began at 8:15. Shortly before that, his dad (who drove 700 miles to be here for the surgery) and I took turns leaning over Aidan to kiss him and tell him that we love him and we’d see him soon. Then Nigel walked up and leaned over Aidan, who immediately put up an arm to fend off any potential brother kisses. I think Nigel expected that. He held his position and just said, “Hang in there.” And that was when I wanted to cry. Because Nigel somehow figured out a way to let his brother know that he cared without alienating him. I put my arm around him and led him out to the waiting area and told him that he’d said the perfect thing to his brother.

To distract Nigel during the surgery, we went down to the hospital cafeteria to get some breakfast. Nigel had corn flakes and a bowl of watermelon chunks, and I had a somewhat rubbery omelette. We went back to the waiting area and Nigel watched a movie on his portable DVD player until we were paged that the surgery was finished. At that point we went back to Aidan’s room to talk with the surgeon, who assured us that everything had gone well and showed us photos of what had been removed. Twenty minutes later, Aidan was wheeled in, not only conscious but talking with the nurses as they were coming down the hall. It felt so good to see his sweet face. I kissed his forehead and he said, “Mom, could you kiss my lips?” Then he showed us his four incisions and told Nigel about the anesthetic. After a few minutes we all sat down and resumed reading/TV watching while Aidan dozed.

Nigel, however, was transfixed on the machine that read Aidan’s vitals. He would not take his eyes off of it and updated me on its status every minute or so. “It looks like he’s having a really crazy dream,” “What do those letters stand for?”, “It dropped below 90,” and even “Mom! It looked like he almost flat-lined for a second!” At the time, it seemed like Nigel was just entertained by the mechanical device. But last night, I started to wonder if he was truly concerned, if he really feared for his brother’s welfare. He kept his vigil the entire time Aidan was hooked up to the machines, as if he thought that Aidan was in critical condition. Even hours after we came home and Aidan was obviously fine, Nigel complained of a stomachache and had worked himself into such an anxious state that he threw up.

In recent years, Nigel has shown an increasing empathetic nature. Whether it’s for a nervous friend or a cat that was accidentally stepped on, he shows empathy. And so does he and so does she. And many others, I’m sure, collectively refuting the old “ASD people don’t show empathy” myth. Not only do they show it, they feel it so intensely that they become upset over it. So yes, there is definitely empathy. There is compassion and support. There is an older brother looking out for his younger brother. And there is love.

My son has memorized the dialogue of many movies. Star Wars, Indiana Jones, Jurassic Park, the old Pink Panther movies with Peter Sellers, various Scooby Doo adventures, Winnie the Pooh, and numerous other Disney films. Over the years I’ve often wondered if this ability to memorize movie dialogue crosses over into other areas of his memory. And it does, a bit. While it’s true that he can spell any word he’s ever read, and has an uncanny ability to remember dates and places of historical events, his memory for his own daily life generally isn’t as dependable.

On a recent trip to the grocery store, I was curious if Nigel remembered how traumatic it was for him to be in them when he was younger, how his sensory issues were so extreme that all the noises of the grocery store were agonizing to him and he would scream and writhe on the floor. He did not remember a thing. It was as if his mind had mercifully blocked the painful memories. I thought perhaps he didn’t remember because the majority of those incidents occurred when he was mostly non-verbal, aside from his cries of “Go! Go!” mixed in with his screams.

Part of me was disappointed because I thought that his memories would be valuable for several reasons. For one, I think it would buoy his self-esteem to see how far he’s come. Also, it would be fascinating if he could shed some light on what made things so hard for him, how he felt, and what he was thinking. Of course, the answers to those questions are obvious (The sounds hurt his ears! He felt tortured! What was he thinking? That he needed to get out of there!), but I just know that there’s so much to be learned from him, from his experiences. And so I figured that if he couldn’t remember the difficult parts of his non-verbal days, he couldn’t remember the good parts either.

Enter Tigger. Tigger is pretty celebrated around here. I’ve mentioned before how Nigel’s stuffed Tigger (bought at Disneyland during my pregnancy) prompted him to write the first little note he’d ever written. The Tigger and Winnie the Pooh stories and videos have also taught Nigel about friendship. And Tigger is responsible for enabling Nigel to do the first imaginative thing he’d ever done. Nigel used to like eating frozen corn niblets. He wouldn’t eat them cooked, only frozen. I would pour them in a little bowl and he would eat them with his fingers. One night when he was four years old, I poured some in bowl and put it on the kitchen table for him to eat. While I prepared some toast for Aidan, Nigel got out of his chair and ran out of the kitchen. He came back a moment later with Tigger. He gently put Tigger’s face in the bowl of frozen corn niblets and said, “Eat” in his little voice, his voice that was actually forming a word, stoic even from the beginning. I was beside myself with joy.

Fast forward ten years. Nigel, now fourteen, still loves Tigger and sleeps with him on his bed. He came to me a couple of nights ago and told me that he wanted to feed Tigger some corn again, like he did when he was little. My spine tingled. “You remember that?” I asked incredulously. He confirmed that he did. He said that he remembered how he felt and what he thought back then, that it made him happy to feed Tigger, and that he believed that he was really eating the corn. He said that having Tigger around all these years helps him to remember something from so long ago.

“Maybe Tigger has a magical quality because he was a gift of love,” Nigel said. I told him that he was probably right. And then he said, “Love reveals its capabilities in unexpected ways.”

I had to turn away, not wanting him to see my eyes welling with tears. “Yes, Nigel, it certainly does.” And I realized that what he said might have been a line memorized from a movie. But so what if it was? He chose the perfect time to say it. And it was beautiful.

Lately I find myself vacillating between extremes of emotion – either blissfully happy or sobbing without reason. Infinitely patient or agitated beyond control. Supremely confident or a bundle of nerves. They’re not so much mood swings as what I call “outlook swings.”

Two weeks ago, I was on top of the world, and not because of any tangible thing. I was filled with a sense of gratitude for every aspect of my life – giddy, almost. It was like I was high on gratitude, just for living. It was nice, but it was also unnatural. It was an extreme positive outlook – so extreme that it had to swing back the other way. My sadness last week came on me like a truck. Granted, I had a lot on my plate with being nervous about Nigel going back to regular school and Aidan’s mystery ailment. But I allowed that anxiety to infect other areas of my life that I needn’t have, like my self-esteem. I suddenly found myself way more negative than I am ever comfortable being. It was the other extreme. Fortunately it subsided with a phone call to a friend.

So how else do we deal with the unavoidable weepy bug? How can we regain our positive outlook when we feel like we have to take on the world (or that the world is taking us on)? My outlook swings have finally normalized (for the time being), and I think it’s because I did all of these things:

• I realized that the kids are all right. Yes, one is adjusting to an environment that used to be very difficult for him, but at this moment he is happily watching Winnie the Pooh in his room. And yes, the other one has some unknown health issues that I’m very worried about, but at this moment he is not in pain and he is listening to Bob Marley in his room. These boys are my world. And as long as they’re okay, I can handle whatever is thrown at me.
• I’ve got a job and a home and good health. Yes, this smacks of being told to be thankful for your dinner because there are kids starving in other parts of the world, but sometimes I have to remind myself that my life could be worse.
• I let myself be sad for awhile. There IS a reason for it, even if I can’t see it. And even though my life “could be worse,” sometimes it’s tough enough to warrant a few frustrated tears.  And everyone always has a right to feel the way they do. So if you’re sad, own it. You do have a reason, and it is valid.
• I called a friend. Let me say that again, because it’s not something I normally do. I called a friend. Usually I’m a go-it-alone person. I often have to force myself to ask for help. I don’t know why; it’s just the way I am. Maybe because I’ve been on my own for so long, I’ve had to be that way, even when the chips were down. But not this time. I felt the need to talk it out, and it helped immensely.
• I recited affirmations. Nigel is calm and comfortable at school. Aidan’s body is healing. I am working toward my goals. My life is right on schedule. I enjoy life. I am where I am supposed to be.* I recite these in my mind throughout my day, and before I go to sleep. It’s also helpful to write them on Post-It notes and stick them around the house where you will see them periodically (bathroom mirror, refrigerator, wine rack).

*Note: Affirmations are generally not as effective when you’re in the middle of a crying jag.

Six months ago, Aidan graduated from elementary school.  On that day, I realized that not only was I proud of my own son for his accomplishments, I was also proud of his classmates. I had watched those kids grow up for the past six years, cared about them, and I shared with their parents the emotion of that special day.

Now, as we celebrate the holidays and this year comes to a close, I realize that I feel the same way about a different group of kids and their parents. I have been fortunate to get to know many families who live with autism. And I appreciate this connection so much. I love how happy I feel when I read about a non-verbal child who finds a way to communicate, or a teen attending his own IEP, or a child who is able to show empathy. I am awed by a teen’s insight in processing something emotionally difficult. And I feel triumphant when our children, no matter what age, are able to overcome sensory issues so that they can attend a huge birthday party, or even go to a nightclub! I feel as strongly about their accomplishments as I do about those of my own children.

These are the gifts that we share. I feel so blessed to have come to know all of you – those I mentioned in this post and many more. I wish all of you a beautiful holiday. However you celebrate the season, I hope it is filled with peace, love, and abundant joy.

My younger son Aidan, who is twelve, has recently discovered Bob Marley. He found one of my CDs from my college days (when I first discovered Bob) and it was love at first listen. Aidan plays it day and night. He tells me that he likes the music, but also the lyrics. And I’ve noticed that, too. Aidan seems even calmer and more introspective than usual. What I hadn’t noticed was that Nigel had also started listening.

Last weekend the boys were very excited because The Day the Earth Stood Still was opening. They had recently seen the original and looked forward to comparing the new one to it. I told them that we’d wait until the following weekend so it wouldn’t be so crowded. Then I made the fatal mistake of writing on the calendar the day and time I hoped that I could take them to see it.  If it’s on the calendar, it’s in stone as far as Nigel is concerned. It’s going to happen. And usually, it does. But that morning the schools had scheduled an emergency 2-hour late start due to bad road conditions, and that threw everything off for the day. Because Aidan started school two hours later, I couldn’t go into work until two hours later. Consequently, I didn’t finish my work until two hours later than I normally do. By the time I got home, I could not do all I needed to do in time to go to the movies that evening, and we would go the following day, I announced.

Nigel got upset. “But it’s on the calendar!” he yelled and began breathing heavily through clenched teeth, eyes wild as he quickly went into meltdown mode. This was not good. I had plans with a friend later that evening (something I had planned to do after the movie), and if Nigel didn’t calm down, I wouldn’t be able to leave him. I tried reminding him about “Old Plan, New Plan.”  “That doesn’t work!” he yelled. He then took a wooden ruler and mutilated a piece of pizza with it. I could tell he was escalating. He went to the living room and broke one of my hand-painted pysanky eggs from relatives in Slovakia. I knew that my response was crucial – he wanted a reaction out of me, so I did not react. I calmly said, “Nigel, pick up those broken pieces and put them in the trash.” And I think he was a little surprised that I didn’t yell at him about the egg, so he actually cleaned it up. He resumed his verbal tirade, but at least he stopped being destructive. Then I had an idea. An alternative for him. It was a “New Plan,” but I didn’t want to call it that.

It was risky, because I didn’t want him to think that I was rewarding him for his behavior. But what I hoped to accomplish was to help motivate him to regulate his behavior himself. Some would call it a bribe. But God knows that when you have to change plans on an autistic teen, you better have an acceptable back-up plan.

I sat him down and tried to look into his wild eyes. “Nigel, here are your choices. You can be mad about not going to see the movie tonight, but that’s not going to make it happen. Or, you can calm down and come with me to the store to pick out a video rental and get some ice cream, and we’ll see The Day the Earth Stood Still tomorrow.” Then I got up and went to my room to get my boots and coat.

Aidan followed me into my room. He looked at me. “Why does he act that way?” he asked with concern and sadness in his voice. “Honey, it’s because the autism makes it hard for him to regulate his emotions and his behavior.”

“Then how is he going to take care of himself when he’s an adult?” Aidan asked in a sincere voice.

A chill ran through my body. I looked at him. “We don’t know if he will. But he’s learning; he’s trying. I think he’ll figure it out. And he can live with me as long as he needs to. So can you.”

I put my arm around him and we walked out into the hallway. Nigel was standing by the front door, with his shoes and coat on. I looked at his face, and the wildness was gone, replaced by a look that I couldn’t determine. Remorse? Gratitude? Maybe both. “I’m ready,” he said. “Okay, I’ll get my purse and keys,” I said. As I walked off, I heard Aidan quietly say to him, “I’m glad you were able to calm down.” And my heart filled with far too many emotions to identify.

A moment later, as I started the car, Nigel asked from the back seat, “Can we listen to ‘Don’t Worry About a Thing’?”

“It’s called ‘Three Little Birds,’” Aidan said.

“Sure,” I said, inserting the CD. And then we all sang, even Nigel:

Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right . . .

The year that I was six, I was sick on my birthday, it rained when we went to Disneyland, and I didn’t get the Baby Alive doll for Christmas. That was disappointing. The year that I was twenty-six, I didn’t get a big job I applied for, my son was diagnosed with autism, and my then-husband announced that he wanted to be separated. All rather disappointing (at least at the time).

We all have our own ways of dealing with disappointment. Some indulge in retail therapy, some take a hot bath, some tell themselves that something wasn’t meant to be. Some get angry and frustrated, or sad. Some take it out on themselves. Disappointment is another emotion that autistic teens are faced with learning how to manage. Of course, all people must, but for someone who has trouble identifying and dealing with difficult emotions, it’s that much harder.

Nigel’s NT friend Riley was supposed to spend the night last night as a positive reinforcement for Nigel cleaning his room. He earned it, and he was really looking forward to it. Then Riley called to say that he hadn’t fully recovered from an illness yet and couldn’t make it. Nigel seemed okay at first and retained his composure on the phone, which impressed me, but afterward I could tell that he was definitely upset. He yanked his hair in his fists and shut himself in his room, where he proceeded to knock a bunch of stuff on the floor he had worked so hard to clean. “I cleaned my room for nothing,” he sneered.

After a few minutes, I went in and sat with him on his bed. I acknowledged his disappointment. Then I gently reminded him of the exercise he had recently done in his social skills workbook called When Plans Change. In it, he learned to create a visual image of changing the plan in his head by removing the old plan, represented by a Post-It note with “Old Plan” written on it and stuck to his forehead, and applying a new plan (a Post-It note with “New Plan” written on it). The new plan consisted of dinner out at his favorite Mexican restaurant, going out to get ice cream, and renting a movie of his choice. And the assurance that Riley would spend the night on a future weekend.

“New Plan” seemed to be an acceptable consolation prize, even though I could tell he was still having a tough time, still wishing his friend could be here. Last night he kept coming out of his room spouting random movie echolalia, which he usually does when stressed. Later, he started coming out of his room talking about bully revenge plans. I think he was displacing his disappointment about his friend not coming over onto a scapegoat of sorts, which seemed to help him. I was glad he found something that worked. Whatever way it rains on our proverbial parades, we all learn to deal with disappointment, whether it’s by doing something to make ourselves feel better or by visualizing Post-It notes on our foreheads. And sometimes a little note helps more than we realize. It might even help us get what we want for Christmas.

Autism and anger – two A-words that don’t go together well. The combination ain’t pretty.

Last night, Nigel was angry. I had given him an ultimatum: You must clean your room or you can’t have your friend spend the night this weekend as planned. This last resort came after a series of interventions on my part to make the room cleaning as easy as possible. I wrote instructions, broken down into steps, for him to refer to while cleaning. I offered the positive reinforcement of having his friend spend the night this weekend. He called the friend on Monday to invite him to spend Friday night, and as of Wednesday night, he had not lifted a finger to pick up his room. Urging him to get started was met with indifference. I mentioned that he would not receive his allowance until the room was clean. Not motivating enough. I removed the DVD player from his room. No worries. So, faced with letting it slide or hitting him where it hurts, I gave him the ultimatum. And I think the real reason he became angry is because he knows that I’ll follow through with it.

Nigel has two ways of expressing anger – he destroys things in his room or becomes a mad dog. The fact that he chose not to destroy anything in his room last night told me that he didn’t want to make the situation worse because, deep down, he knew that at some point he would have to actually clean his room. So, on some level, he still had control of himself. He just wanted to act like he didn’t.

The first time Mad Dog entered our home, I was quite scared. Nigel, heading into adolescence, was having a lot of trouble filtering the sensations caused by his new hormones. I didn’t know what to expect from him. He was hissing, growling, biting, and making death threats. I don’t even remember how I got him to calm down – I think I just waited it out, holding my breath. Mad Dog has reared his head a few other times in the last couple of years. The death threats have subsided, but the rest of it is no picnic.

After I told Nigel that he would have to cancel his sleepover unless he cleaned his room, Mad Dog came bounding out. He leaped around the living room, growling and hissing, jumping on the back of the couch where my boyfriend Rick and I were trying to watch a movie. I was not pleased. I tried herding him back to his room, at which point he threw himself on the floor and began biting my legs. My patience wearing thin, I left him there in the hallway and went to the bathroom to regroup.

I came out a moment later to the sound of laughter. Apparently, Mad Dog had gone back out to the living room to jump on the back of the couch, and Rick deftly infused some humor into the situation. He grabbed Nigel and gave him a wedgie. That startled Mad Dog right out of him! Nigel went back to his room for a few minutes, and then he came out with a plan. He knew that shoving everything into the closet wouldn’t fly, so he offered to bundle it in an old sheet and drag it into the storage room. I came up with a plan of my own. I told him that first he should put away all the clothing that was on the floor, and then we’d consider using his sheet method. He said okay. After he’d put away all the clothing, I went in and surveyed his room and said, “Why don’t you just put all the stuffed animals back on your bed?” By the time he had done that, the piles on the floor looked much more manageable. I suggested he pick up all the DVDs. “Just the DVDs,” I said. Then, since it was bedtime, I suggested that he could do his sheet plan tomorrow, after he had picked up the books. He said okay.

And so we managed to learn a few important things here at Teen Autism:

1. Humor is a significant tool for diffusing anger.

2. Allowing Nigel to come up with his own plan is an effective motivator.

3. Compromise might actually be possible.

4. Bargaining is very productive.

5. Mad Dog is vulnerable to surprise wedgie attacks.

So often with ASD in the house (and especially away from the house), we focus on damage control and looking for signs of anger, frustration, and sensory overload, trying to cut them off at the pass before they mushroom into a complete meltdown. We instinctively watch for signs of escalation in our children and have learned their triggers, how to avoid them if possible and how to manage them if not. We are attuned to their body language, their sounds, their facial cues. We’ve got it down to a science.

Last night I heard Nigel’s laughter while he watched a funny movie, his hearty, sincere belly laugh.  And I smiled, enjoying his happiness. He also hums when he’s happy, a soothing little six- or seven-note tune that he repeats over and over again. Often I will walk by his bedroom as he is working on his computer, building Lego, or reading, and I hear his happy humming. And I remember when he was a baby how I used to hum while rocking him in the rocking chair, my humming reverberating near his head as we both rested. His current hum is not the same tune, but when I hear it I get the same feeling, the same serenity, as I did with my humming from his babyhood – ethereal, calming, and restorative.

The signs of contentment are just as important as the signs of distress. We may not need to attend to them, but we appreciate them, fleeting as they may be. Sometimes I think we need to pay as much attention to those moments as we do to the others.

Happy humming, everyone.

Being a movie lover, Nigel considers himself lucky to have a father and stepmother who work in the movie industry. Through his father, he met Nicolas Cage (Raising Arizona and National Treasure get played a lot in our house) and watched him do an impromptu puppet show.  Nigel said he was very funny and nice.

Nigel has also been a long-time fan of Robin Williams. In fact, it was Mr. Williams’ performance as Genie in Aladdin that encouraged Nigel’s beginning communication through echolalia. Nigel went on to enjoy other Robin Williams movies, such as Popeye, Flubber, Hook, Toys, Mrs. Doubtfire, Robots, and Night at the Museum, which he has a poster of in his room. His all-time favorite, however, is Jumanji. So when his stepmother came home from work last week and announced that she was working on a film starring Robin Williams, Nigel, eyes wide, said, “Tell him I’m his biggest fan.” She did, and Mr. Williams, who has probably heard that a few times before, quipped, “Oh, did he take a poll?” and proceeded to personally autograph Nigel’s Jumanji DVD. When his stepmother brought it home for him, his dad said that Nigel’s eyes actually watered, and when I spoke to him about it on the phone today and asked Nigel how he felt to receive the autograph, he immediately said, “Ecstatic!” To me, that’s the best part about movies: helping autistic kids to try to communicate, and later, to identify their emotions. How great is that?

It’s so quiet that it feels like the house is holding its breath. Today marks the half-way point of my sons’ summer visit with their father for seven weeks.  They return on August 1, and I am longing to hear their voices and footsteps fill the house again.

I remember when I was growing up in the seventies I would read books and see movies from the fifties and sixties about kids going away to camp for the summer. It was for much longer than one or two weeks; it was like, two months. Remember the original Parent Trap? They were gone for so long they were able to fool their parents when they got back! It just seems like that was the thing to do then – go to camp for the summer. I never did as a child. And although I wondered about it, I was glad that I didn’t have to go. I like the outdoors, but I would miss home. And what about the parents? Did they want to send their kids to camp, or did they do it because it was the socially acceptable thing to do? I try to imagine what that was like.

So I pretend that my boys are away at camp. They’re at Beach Camp. I just talked to them last night, and it sounds like that’s what they’re doing the most, what they enjoy – going to the beach. They both like to boogie-board, which is amazing to watch. I saw them do it when I visited them in LA three and four summers ago.  It is wonderful to watch your autistic child excel at something. It’s wonderful to watch any child excel at something, autistic or not, but there’s more gratitude concerning the autistic child. Because not too many years ago I wondered if mine would enjoy doing things like that, would enjoy anything other than watching Disney videos and lining up Hot Wheels cars end to end along the back of the couch and leaning his head to one side to stare at them. Yes, I am grateful that my autistic child has learned to boogie-board, and he likes it.

I have much to be grateful for. I think that is the key to getting through the next three and a half weeks of missing my sons. I’ll keep in mind all the things I appreciate about them, what makes them special as individuals. Just like the twins in The Parent Trap. Their parents were happy when they came home from camp, too. But at least I’m able to tell my kids apart!