Sleeping Bag Talks

I’ve reached four summits this summer: Shasta, Thielsen, Wizard Island, and Lassen. I definitely felt a need to stretch my legs for various reasons. But my handy desk dictionary lists another definition for summit: “a meeting among heads of state.” These meetings are often referred to as summit talks, and I just had one a few days ago. Except in our family they’re now called “sleeping bag talks.”

I think of my sons as heads of states. They are the heads of themselves, and so I need to check in with them every now and then, to regroup, and to just talk. I used to have lofty ideas of holding monthly “family meetings” about what was going on in our lives, what we need to work on, what we’d like to do, etc. Of course, nothing that structured could actually materialize. If I were to walk into their rooms on a Sunday afternoon (which my delusional self always thought would be a good time for a talk) and say, “Hey, guys, let’s have a family meeting!” they would be all, Are you serious? That’s so Brady Bunch, Mom. No, they’d be much too busy building Lego/playing Halo/Googling Everything. And so, I have to sneak in my family summit talks. I’ve learned to strategize.

Take our recent camping trip, for example. What else do you do in an 8 x 9 tent with your sons on either side of you and one of them can’t sleep because you forgot to give him his medication until late in the afternoon and it’s keeping him up? That’s right, you talk. When autistic/ND kids want to talk, you go with it. Carpe diem.

I can’t remember when I’ve had more fun talking with my boys! Nigel started off with a discussion about time travel, influenced by having watched Back to the Future for probably the fifty-eighth time. But, unlike his usual one-sided talk about how he was going to make his own time machine and what he would do with it, he wanted to converse. He asked both Aidan and me what we would do if we had a time machine. After talking about famous people we wanted to meet (Abraham Lincoln and Charles Dickens), and then talking about all the presidents who were assassinated and possible reasons why, I came up with the suggestion of going back a hundred years and buying stock in Coca Cola.  The boys yelled “Genius!” and high-fived me in the dark. Then we talked about what we would do with the money. I must admit that, aside from saying we’d use some of the money to help out friends and family, we’re not the most altruistic bunch. Aidan wanted to start his own company (now it was my turn to high-five him), Nigel wanted a room full of Lego (which, in my opinion, he already has), and I wanted to travel more and be able to take the boys with me.

And after a while, Aidan fell asleep, and then Nigel turned to me, as if he had been waiting, and asked, “When did you first see signs that I had autism?” And I told him that when he was about two and a half I realized that he wasn’t trying to talk or interact, and that by the time he was three, after some evaluations by doctors and therapists, it was determined that he had autism. I couldn’t discuss – yet – the complexities of his sensory issues, the way he screamed and writhed on the floor of grocery stores and restaurants, not because he was having a tantrum, but because someone had turned on an electric coffee grinder. I couldn’t tell him – yet – about how he lined up his toy cars along the back of the couch and laid his head to one side and stared at them while he sucked his fingers instead of driving them around on the floor making engine noises. I don’t know if he’s ready to hear about all that yet. But I knew that he could understand the not-talking part. As soon as I mentioned it, he said, “Probably I was just taking my time.”

And since it was dark, I did not wipe away the tears streaming down the sides of my head. I said, “Yes, Nigel, I’m sure you were. And I’m glad that you learned to talk. But if you didn’t, that would be okay, too.”

And then he said, “Mom? With that money we get from time traveling, how about if we give some of it to other kids who have autism so they can have speech therapy to learn to talk?”

I hugged him and told him we could certainly do that.

Next time we go camping, I better bring a whole box of tissues.

Mountains and Milestones

Nigel at Mt. Lassen summitAn adventurous spirit runs through Nigel’s blood from both sides of the family. In spite of his fear of bees and other flying insects, he tackled Mt. Lassen with a fervor usually reserved for Lego-building. I, having climbed Mt. Shasta earlier this summer, was impressed and proud.

He was often ahead of me on the 5-mile round-trip trail, which isn’t long compared to the 14 miles for Mt. Shasta, but for a 13-year-old climbing his first mountain, it was quite an accomplishment. He noted with excitement that this, at 10,457 feet, was the highest he’d ever been on land.

Meanwhile, Aidan had a fun time kayaking with Grandma around the lake. She said that he followed her instructions and they made a great team.

Day 2:

Nigel, sore from yesterday’s climb, has a bee-induced meltdown while on an interpretive trail in a section of the park called the Devastated Area. I’m not joking; it’s really called that. I can laugh about it now. On the way back to camp, I realize that I deserve the Slacker Mom of the Year Award for not reminding Nigel to take his medication. We had packed it, but he had forgotten to take it. I note once more, after the meltdown, that the medication really does help, because of how his behavior is affected when he doesn’t take it.

Meanwhile, Aidan stayed in the car.

Ranger MadelineDay 3:

We got to see my mom in action doing one of her Ranger programs! Here she is holding a bobcat skull. It has been her dream since childhood to be a Ranger at Lassen National Park, and this summer she achieved it! Way to go, Mom! 

After the program, we started on our drive home, stopping at Burney Falls State Park in northern California. I had been here over twenty years ago, and the falls are just as beautiful as I remembered them. I was happy to be able to share the experience with my sons.

Meanwhile, Aidan refused to be in the photo. But he agreed that the falls were pretty!Nigel at Burney Falls

 

One Last Trip

We are off to Lassen National Park, getting in one last camping trip before summer’s over! Nigel will be hiking up the 10,457-foot peak with me while Aidan (not into hiking so much) joins Grandma for a canoe ride on Manzanita Lake. My mom works as an interpretive ranger at the park, so it will be fun to see her lead one of her ranger programs. We’ll return Thursday with a full report! 

A Complex Thing

Last night as I was saying good night to Nigel, I noticed that all of his fingernails were edged in black, as if he had taken a Sharpie and drawn under the nail tips and around the cuticles. “Is that paint on your fingernails?” I asked. He breathed in sharply and froze, alarmed because I had noticed. “It’s from the Magic 8-Ball,” he said.

Then I froze. “You took it apart?”

“I tried to get the fortune thingy out.”

I did not respond because I was wondering what happened to the inky, chemical-filled liquid inside the Magic 8-Ball. I was also remembering other things Nigel has taken apart. Finally I decided that since I didn’t see any stained towels or patches of carpet anywhere, he must have dumped the liquid down the drain and must not have ingested any or else he’d be very sick. So I decided not to stress about it.

Nigel: I wanted to know if it was a simple pyramid or a more complex thing.

Me: So which was it?

Nigel: It was not a pyramid. It was like a prism-pentagon.

So there we have it. I, for one, have always wondered about those things. Mystery solved, and in such a metaphorical way. It had to be a more complex shape. How else could it have answered so many of life’s big questions?

The Dragons of Autism: A Review

The Dragons of Autism 

The subtitle of this insightful yet practical book is “Autism as a Source of Wisdom,” and author Olga Holland offers that and more. Many autism-parent memoirs are beautifully thought-provoking, and enjoyable to read, but don’t present much in the hands-on, getting-through-the-day department. The Dragons of Autism eloquently and effectively addresses both of these areas.

Holland possesses an analytical mind which enables her to invent and apply various approaches to managing her son’s behavior and helping him adapt to situations that aggravate his sensory issues. She is no stranger to meltdowns (called tantrums in the book), having dealt with her son’s episodes that occurred several times a day. A large portion of the book is devoted to damage control strategies as well as possible prevention techniques. She discusses the technique of Buying Time as a long-term method of re-training problematic behavior or enforcing house rules (such as bedtime). Holland goes on to describe the importance of schedules and having rituals to enforce them. She empathizes that yes, it is time-consuming for parents of autistic children to organize and maintain a schedule in written form, but she advises, “Look at it as a craft – a part of the craft of raising an autistic child.” I think that’s the perfect way to describe it – a craft that we become better at as the years go by.

Holland includes plenty of descriptions of her son’s characteristics and behavior, and I found it both engaging and affirming to recognize so many of them in my own son, as I’m sure many parents would. This book is helpful not only for parents of younger autistic children looking for ways to manage meltdowns/tantrums, but also for parents of older autistic children. Most of us still have to deal with meltdowns, even though now they may occur for different reasons than when our children were younger. Holland provides effective strategies using empathy and creativity that are both helpful and humane. I’ve referred back to this book many times in the five years that I’ve owned it, and will continue to. It’s a good read.

The Time That We Have

Today I couldn’t wait to get home from work and hug my kids. I do that every day, of course, but today I was reminded of the unfortunate truth that all humanity shares: we never know how much time we have.

The son-in-law of one of my friends had a massive stroke and died today. He was thirty-three years old. Thirty-three! He leaves behind his wife (my friend’s daughter), their five-year-old daughter, three-year-old son, and unborn third child. I can’t even imagine their grief. All I can do is remember, as I do when I hear about a sudden death or drive by the scene of a horrible accident, that our time with those we love could end at any moment. Morbid, yes, but also motivating. It’s the kind of thing that makes you want to hold your kids (if they’ll let you), call up your parents and siblings, and tell everyone who matters in your life how much you appreciate them.

I think of all the bad days I’ve had in the past year alone, the frustrated helplessness of dealing with meltdowns, school districts, doctor appointments, insurance, finances, and everything else about life that’s stressful, everything that makes me loathe my day. But then I remember: I’m here. I’m alive, I’m usually well, and so are those to whom I’m closest. I can come home from work and hug my kids. I don’t ever want to take that for granted.

The time that we have is the only time that we have. It may be filled with some unpleasant or challenging aspects, but it’s also filled with the company of those we love. And that makes every day worthwhile.

Toy Envy

We have been waist-deep in Birthday-Induced Toy Envy and Younger Brother Control Issues. Far be it for me to think that this problem might have abated by now, but apparently twelve- and thirteen-year-olds are just as susceptible. Only now they are bigger and hormonal. And they’re not embarrassed bickering in front of their friends.

For his birthday this past weekend, Aidan received a toy that has flown off the local toy store shelves: Transforming Wall-E. His father had purchased it a month earlier in LA and brought it up to Oregon for the party. Nigel fell in love with it, and Aidan exploited that by not letting Nigel hold it. This is difficult territory for me for several reasons.

  • I want Aidan to share, but I don’t want it to be forced.
  • He already accuses me of favoring Nigel.
  • Nigel can learn patience about getting to hold his brother’s new things, but I certainly can’t expect commendable behavior from him in the same sensory-overloaded situation.

So Nigel kept nagging and Aidan kept refusing and Nigel’s behavior was escalating, but I was distracted getting dinner ready for a bunch of adolescent boys and couldn’t intervene. Finally, I had them all sit at the kitchen table, hoping the pizza and root beer would be enough to distract Nigel, but it was too late. He was in meltdown mode, clenching his fists, gritting his teeth, and growling. “Nigel, relax and eat your pizza,” I calmly suggested. “RRRRRRAAAOORRRR!!!” he growled in the face of the boy seated next to him. Fortunately, I was nearby and was able to grab Nigel as he lunged at the poor boy (a wonderful family friend who has witnessed Nigel’s meltdowns before and still agrees to come to our home). I managed to walk Nigel to his room as he growled, hissed, and clawed at me, his eyes wide with a combination of rage and fear. I reminded him that he needed to calm himself before he could finish eating and hang with his friends, and then I went back to the kitchen to apologize.

The friend whom Nigel had roared and lunged at asked if Nigel was okay, bless his compassionate heart. I thanked him for being so understanding. When I went to check on Nigel about fifteen minutes later, he had shredded a file folder, but he was de-escalating. I could tell he wanted to rejoin his friends because he was lying on the floor on his back, with most of his body outside of his bedroom door, and he was quietly talking to himself. Five minutes later, he was running around with his friends, laughing.

The next day, he came to me and asked if I would buy him his own Wall-E toy. I told him that he could use his allowance to buy it, but that all the local stores were sold out, so we would need to order it online. He flopped down on the chair in my office and said, “They’re like a flying pack of locusts, taking everything they can get! If only they could let me have a chance!” This was said with much more emotion than his usual flat tone. “Who?” I asked. “The store customers?” “Yes!” said my son, victim of consumerism.

And Aidan, I’m happy to say, finally relented. Last night, the three of us were relaxing on the couch watching a movie. Nigel diplomatically requested to hold Wall-E for “only a minute.” Aidan gave him three. And all was well in my little corner of the universe.

Assisted Wooing

Nigel: Those two look attractive.

Thus begins a new category here at Teen Autism: Dating. Now that he is nearing fourteen, Nigel has adjusted to the hormones that began coursing through his body last year. He no longer growls at me (unless he’s having a meltdown). Now he has discovered that these hormones can be channeled into something more productive: obsessing about girls. In fact, perhaps I should re-categorize this post under Obsessions.

But no, this is no ordinary Obsession of the Week. This is Nature Running Its Course. And I am glad I had already registered to attend this upcoming seminar.

We have some friends visiting from out of state this week who are staying at a local motel with a pool, which was good planning on their part since it got up to 108 degrees. I took the boys over to visit them at the pool, where they had fun with their friend who is Aidan’s age. At one point, two girls about Nigel’s age entered the pool, and that was it. While Aidan and friend blithely continued their goggle-clad shenanigans, Nigel made it a point to remove himself from their presence and began showing off diving near the two girls. He would come up for air near them, and I, Mama Bear, became incensed when the girls rolled their eyes and turned away. Be nice! I wanted to yell. Give him a chance!

Then Nigel got smart. He enlisted the help of someone who had once been a girl. That’s when he came over to me in my corner of the pool and said, pointing, “Those two look attractive.” He continued with, “I feel a little anxious. Is it common for males to feel anxious about mating?” Oh, my son. “Try not to point, honey. Yes, it’s common for boys to feel anxious about meeting girls. But the term ‘mating’ usually refers to animals.”

Nigel: Oh. [makes a swimming motion] Maybe I should show them my moves.

Me: Usually girls just like it better if you talk to them. You can tell them your name, and then say, ‘I just wanted to say hi.’

And then, oh, this was so sweet, he went over to them and said, “Hi. Name’s Nigel.” (That’s exactly how he said it!) The girls said hi and introduced themselves, and then Nigel said, “That’s my mom over there,” and pointed at me! The girls waved to me and I waved back. Part of me wonders if Nigel has learned that if he lets kids know that his mom is nearby, they will be nicer to him. And that is usually what happens. But maybe he couldn’t think of anything else to say to them right then. Maybe he did it for some other reason. I’ll probably never know, but that’s okay.

What matters is that for the remainder of the afternoon, whenever I saw Nigel near the girls, it appeared that they were being nice to him. Thanks, girls! Whether my presence motivated them or not, at least they learned that if at first someone seems a little different, they might not be so bad. A little patience goes a long way, especially in the beginning stages of dating (or “mating,” as Nigel would say).

Happy Birthday, Aidan!

Aidan\'s BirthdayAidan turned 12 on Friday, and we had his party yesterday, complete with a trip to the local water slides. Let’s hear it for summer birthdays! Then we came back home for pizza and a 5-kid sleepover. Needless to say, we’re all a little tired today!

Every year Aidan’s birthday is our kick-off for getting ready to go back to school. After his party, we have two weeks to buy school supplies and clothes, get in one last camping trip, and get our collective brains in gear. And that last part applies just as much to me as it does to the kids because I’ve got to plan Nigel’s homeschooling for the year and get back into academic mode.

So we’re enjoying this birthday weekend as much as we can, because we all know what it ultimately means: Back to the grind!

I can hear the groans already . . .

Blood and Noses

Last night when I went to Nigel’s room to say goodnight to him, I noticed that he had dried blood smeared on his cheeks. “Did you have a bloody nose?” I asked. “Yes,” he said with nonchalance. “I took care of it.”

That’s what I was afraid of.

During warmer weather, Nigel gets bloody noses as often as once or twice a week. This has not been a lifelong occurrence, fortunately; it’s only been for the last few years. He doesn’t seem bothered by them, but he insists on handling them himself. Meaning, he doesn’t tell me until after the fact. Or he doesn’t tell me at all, and I happen to discover it.

I went to the bathroom and it looked like someone had been murdered in there. Drops of blood splattered up to the ceiling, blood was smeared all over the mirror, sink, and floor, blood-soaked tissues filled the trashcan and spilled onto the floor, and wadded up towels encrusted with blood were wedged into the space between the towel bar and the wall. How on earth is this level of carnage caused by a simple bloody nose?

I know I need to teach him to clean it up, but it is late, I am sick with the flu, and I decide to deal with it tomorrow. I go to bed wondering why he does this with his blood. I’ve read articles written by parents whose autistic children handle their feces this way, and so I’m glad that it’s blood, and I’m glad it’s usually confined to the bathroom (the living room couch was stained once or twice). But why does he do it?

I think blood fascinates him. During one of his bloody noses last year, Nigel stuck a small test tube up his nostril in an effort to collect his blood (and he was successful, apart from the mess). He said he wanted to test his DNA. For what, I have no clue. He was going through a Hulk movie-watching phase, watching the DVD every day for a week, so the test tube incident might have been motivated by that. Maybe he figures if he has such a profuse amount of blood on hand, he might as well do something with it.

I need to buy stock in Spray ‘n Wash, considering the amount of Stain Sticks that I go through, what with the bloody towels, clothes, and couch. Such is my life. With that sense of resignation, I took some Nyquil and crawled into bed. I slept well, random dreams of blood splatters notwithstanding. I got up late this morning and, noting the empty house, remembered that the boys’ dad was taking them river rafting today. I still felt weak with flu as I trudged passed the bathroom and peeked in. It was clean.

Most likely, their father had cleaned it, even though he doesn’t live here. But he knew I was sick, so that was thoughtful of him. I still need to teach Nigel how to clean up his own bloody-nose carnage, but there will be plenty of other opportunities for that, I’m sure. For now, I better get out the Stain Stick. The towels got it pretty bad this time.