Teen Autism

It was like having your favorite storybook characters come to life. That’s the best way I can describe it.

This past weekend I attended a gathering of people, mostly autism bloggers, who had participated in helping to raise funds for a service dog for Riley, Michelle O’Neil‘s daughter. How powerful it was for me, someone who, less than a year ago, did not personally know anyone who had a child on the autism spectrum. To sit at a table with twelve other parents of ASD children, including bestselling author John Elder Robison, was an incredible experience. I could literally feel the strength and solidarity of purpose. We are connected, and not just the people at that table. We are all connected – fellow bloggers and autism advocates, readers of autism blogs, and all parents of ASD children, no matter where they live or if they have Internet access or not. We all have different journeys, but we share the same goal – to help our children.

And so I felt privileged to partake in a lovely meal with some remarkable people. Jess and Matt Wilson and their children, who opened their home to several of us who covered some ground to get there, including Mama Mara (who brought chocolate cow pies), Pixie Mama (who posted beautiful descriptions of everyone), Michelle O’Neil (who posted some photos!), Kyra of This Mom (who posted the play-by-play), and myself. I am also glad to have met Jeneil of Rhemashope, Jenn of Devin’s Journey (who posted my new favorite metaphor), Petra of Our Journey, and Kim Stagliano and her husband. John Elder Robison not only graced us with his presence, he gave each of us two of his stunning, artistic photographs, and I can’t wait to frame mine and hang them in my home.

But I came away from this weekend with even more than some spectacular JER photography and a chocolate cow pie.  I came away with a sense of completion, and belonging. When I started this blog almost a year ago, I felt so alone. I wanted so desperately to connect with other people in my shoes. I knew there had to be plenty of other parents of ASD kids out there (1 in 150, so they tell us!), but for ten years – ten years! – I didn’t know that I was already connected. Now I do. Not just with the ones I broke bread with this weekend – all of you. Those who read this blog, and those who don’t. Those who don’t even have access to computers. Whether we know each other or not, no matter where we live, we are part of this community.

I no longer feel alone. And I hope that in reading my words, all of you out there feel the same way.

I’ve never seen The Seven Year Itch (although at some point, I’d like to). The phrase, according to Wikipedia, “refers to a disinterest in a monogamous relationship after seven years of marriage, has entered the popular culture, and has even been used by psychologists.” And now it will be used by the mother of an autistic teen, with an entirely different meaning.

As my son entered his second year of teenhood, which was just a couple of months ago, I began noticing something. Over the course of a few weeks’ worth of seemingly isolated incidents, I realized that Nigel, who had always been notorious for the eternally flat tone in his voice (except when angry), was suddenly speaking with inflection. And not just random variations – he actually put appropriate emphasis on the right words. His tone was starting to sound conversational! It took another week or two of me pointedly observing him talk and noting the increase of his inflection before I allowed myself to believe it. This is truly a developmental coup. It’s a milestone for the five-year-old boy who, when a child psychiatrist asked, could not say his own name. It’s a milestone for the boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people. He has worked so hard to achieve this.

I know that much of the increase in voice inflection has to do with the weekly social skills class that he is enrolled in at the local middle school this year. It’s a very small class, with only two other students, but I know that the two instructors have been specifically working with Nigel on his conversational skills. Whatever they’re doing – it’s effective. And he’s responding to it, which tells me that he’s ready. It’s time.

What do I mean by that? That’s where my seven-year-itch theory comes into play. Over the years, I have noticed that every seven years Nigel seems to make a huge leap in various areas of his development. It’s like he has this really significant itch every seven years, and when he scratches it, he hits a milestone. For example, when he was two, his sensory issues were so severe that he had to wear a fitted hooded jacket whenever we left the house to muffle sounds and help him feel secure. When he was nine, he had a wonderful regular ed teacher (he was mainstreamed that year with an aide) who not only taught him a lot academically, he patiently encouraged Nigel to remove his hood for the first time. That was also the year that I could take Nigel into grocery stores and the occasional restaurant. Another example of his seven-year-itch is in the cognitive area. When he was three, he taught himself to read, but I was told that it was common for young children with hyperlexia to not comprehend most of what they read. Seven years later, when Nigel was ten and reading at a high school level, his comprehension was tested. It was estimated that he understood about 95% of what he was reading.

When Nigel was seven, seven years ago, he really started talking. He had some speech prior to that year, but it was mostly echolalia and scripting (a term which wasn’t used much then). He would occasionally string up to four words together to communicate, but he had trouble with syntax and pronouns, verb tenses, etc. When he was seven, something clicked. He got an itch. He started stringing together more than four words spontaneously, his syntax and verb tenses began improving, and his echolalia decreased. It was remarkable. Of course, his tone was characteristically flat and downright stoic, but that was okay. It was definitely okay with me.  I figured he would always talk that way, and that was fine.

And now, seven years later, the inflection surfaces. On appropriate words, even. I am so loving this – this unexpected gift. Some seven-year-itches can be good.

I now have a feather to put in my cap and a web badge to put on my site. NaNoWriMo is over (well, it’s officially over Sunday night, but I pushed myself to be finished by Thanksgiving), and I have a novel under my belt! Of course, I’d like to double its length (it’s only about 175 pages at this point), but I can take my time with that.

Writing under the gun like that is not entirely new to me; it’s just been a while. I worked three jobs while in college, and, as an English major, I wrote my fair share of papers at 4 AM. What was new about doing NaNoWriMo was that I didn’t go back and edit a single thing. I didn’t read over anything I had written. I just churned out words and forged ahead. I felt like it wasn’t fair – I labored over all of these words (often up to 2700 a night), and I just forced myself to click save and continue. I didn’t get to enjoy them, savor them, rearrange them until they were perfect. I’m not used to writing fiction that way – so unattached. It was difficult at first, but I realized that it was the only way to get all the words down in the time that I had.

Now that it’s over, I’m looking forward to the following:

• Catching up with Nigel and Aidan, who are glad to have their mom back
• Cleaning my house (the end result more than the actual cleaning, of course)
• Reading whatever it is that I wrote! I wrote so fast that I can’t remember!

An 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.

Day 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!

As I had written in a previous post, I believed that once Nigel learned to write, that would “liberate him to no end.” Last night I came across a description I wrote seven years ago about Nigel learning to write:

Near the end of the year, Nigel began printing his name. Just a month before, he refused to hold any writing utensil, as he had been doing since age three when we first tried to get him to scribble; he seemed to have an aversion to holding pens, pencils, crayons, and markers. But now, at six, he has begun. Being a bit of a perfectionist, he gets very frustrated with himself because he has trouble making the letter G, both big and small. But he perseveres, and now, just three months later, he writes full sentences, short “letters,” even. (“Dear mom, Mom get string cheese, Love mom” – I’ve tried to tell him that he needs to say “Love, Nigel” on his letters so that the people know they’re from him, but I guess he thinks, Why wouldn’t you know who it was from? I just handed this to you, so you must know it’s from ME.)

He has also started drawing for the first time, which is fabulous. The first things he drew were little cars with smiley faces. I will always remember how happy I was when he started writing and drawing. The first night he did, he came to me and asked me to “write a letter to Tigger.” I told him I was washing dishes and I would do it as soon as I was finished. A few minutes later, I turned around and there he was at the kitchen table, hunched over a piece of paper, writing diligently, struggling with the Gs in Tigger. I looked over his shoulder just as he was finishing, and saw that he had written, “Dear Tigger, jumps note, Piglet and Pooh.” He put it in an envelope because he wanted to mail it to him.

Since then, Nigel has been writing and drawing every day. He went through a sign-making phase. He put up signs all over the house saying things like, “Warning: Do not let mom out of the house” on the back door, “No children allowed” inside the front door of Aaron’s [his father's] house, “No smoking,” on Aaron’s closet door, “Reward: Do not let dogs out of the cage” on his and Aidan’s bedroom door, and several “Missing: Stuart Little” signs all over the living room when he couldn’t find his Stuart Little video. Currently, he has been drawing traffic lights and houses. He also recently drew an adult male lion and a lion cub, and when I asked him who it was, he said, “Simba and his dad.” I initially thought that Nigel’s writing and drawing would be a way to communicate his needs, but it has revealed more about his emotions and priorities than I ever would have imagined.

Here’s a riddle:

What’s both beautiful and exhausting at the same time?

Answer: autism and climbing mountains

I suppose that giving birth could also be a fitting answer to the riddle, running a marathon and stuff like that. But autism is a part of my daily life, and I just climbed a mountain yesterday, so that is what I’m going to write about.

Early Saturday morning, my sister Macrina and I met up with my friend and excellent guide, Tom Prescott (a big shout-out to Tom, without whom we couldn’t have done this), and drove an hour and a half to the trailhead for Mt. Shasta in northern California. We then strapped on our 50-pound frame packs and proceeded to hike five miles to base camp at 10,400 feet. It was brutal! I can hike forever, but I hadn’t thought to train with a heavy pack on, and I wish I had! We got up at 3 AM on Sunday and put on lots of warm layers, crampons, helmets, and smaller day packs with water, our camera, and Power Bars. Then we started up the remaining two miles to the summit. Parts were very scary, like when we were climbing up a crazy-steep (about 60-degree) slope of snow and ice, literally clinging to the mountain with crampons and ice axes. For someone with a fear of falling (me), it required an intense amount of focus and trust. In what do you trust? Your equipment, your technique (I did some mountaineering research last week, but it was my first time trying it out!), and whatever higher power works for you.

At 11:11 AM we reached the summit! Most sources list the elevation as 14,162 feet, but according to Wikipedia, the most current and accurate height per the National Geodetic Survey is 14,179. Here I am with my slightly shorter (but hardier) sister:

As I marveled at our accomplishment, I thought about how often the difficulties we face in life are likened to climbing a mountain (“Climb every mountain . . .” from the Sound of Music, “I have climbed highest mountains . . .” from “I Still Haven’t Found What I’m Looking For” by U2). Raising an autistic child has often been like climbing a mountain for me. I don’t know if a summit even exists, but I will keep climbing, I will focus, and I will trust. Life with autism, though sometimes daunting, is not insurmountable.

Upon returning home, I went to Climbingmtshasta.org to read the Summit Log (unfortunately it had to be disabled due to spam, so I was not able to contribute). I was moved by the number of entries from people who said that climbing it changed their lives, and that the spirit of Mt. Shasta will always be with them. I find myself in that category as well. It is a mystical mountain, majestically standing alone, one that I have loved since first seeing it at age seven. Now, exactly thirty years later, I faced my fear and made it to the top.

Last night was an important night for Nigel! After being involved in his Boy Scout troop for two years, he has advanced to First Class rank, the mid-point on the way to Eagle.

As I have written before, our family has been involved with Boy Scouts for almost four years, and we’ve been fortunate to have gotten to know some really great Scout families during that time. All the kids just let Nigel be Nigel; they tolerate his “fake laugh” (sort of an exaggerated, cackly rendition of the laugh track on old sit-coms), they hold up his end of the flag when he can’t figure out how to hold it during the Court of Honor, and they don’t pick him to recite the Scout Law because he’s uncomfortable getting up in front of everyone. They accept him and for that I am so appreciative. (I guess they wouldn’t be very good Boy Scouts if they didn’t!)

So, he feels like he belongs, and he is slowly but surely working his way towards Eagle Scout. I don’t know if he’ll get all the way there, but he’s definitely learning and enjoying himself. And that’s the whole point.

One of the most difficult things to teach an autistic person is empathy. It can require years of repetition, and even then reminders are needed; rarely is an empathetic act spontaneous, at least in my experience. It’s just due to the nature of autism – inherent in the “aut” (self) part of it. And so, we have to teach them to care, and we hope that one of these days they’ll do it on their own.

This past weekend Nigel went on a two-night backpacking trip with his Boy Scout troop, and I stayed home with Aidan. Nigel usually does very well with the troop, provided they’re not doing the type of gift exchange where everyone picks a number, and the higher number-holders get to “trade” gifts with the lower number-holders, whether they want to or not. No, Nigel didn’t do well with that. He lost a giant chocolate bar that way, and he’ll never forget it (I’m sure no one else from the troop who attended that gift exchange will forget it either). But other than that, most of his outings with the troop are problem-free. I asked the scoutmaster to remind Nigel to take his medication, and off they went on a 13-mile backpacking trip.

Upon their return, I asked the scoutmaster how things went, and he said that Nigel did really well. He only took issue with having to get into a wet tent after it had rained. But then the scoutmaster told me that one of the nights he woke up to what he thought was a coyote, then he realized it was one of the kids crying. He got up to investigate and realized it was coming from Nigel’s tent, which he shared with another boy. The scoutmaster stood and listened as he heard Nigel consoling the other boy whose stomach was hurting. When the other boy said he wanted to go home, Nigel calmly stated that there were no motorized vehicles to take them home and that he should try to relax. The next morning the scoutmaster thanked Nigel for helping the other boy.

It has taken many years, with many setbacks along the way, but Nigel has reached a very important milestone: showing empathy (in a leaky tent, no less). I’m certainly not deluding myself into thinking that it will always be like this from now on, but it’s an encouraging start. It’s more than encouraging; it’s truly wonderful. He’s applying life skills without reminders, and I am thrilled.

It’s a gorgeous spring day here in southern Oregon, and, after we finished with homeschool, Nigel wanted to ride his bike, alone, to a store a mile and a half away on a busy street. I blanched at the thought.

As I have mentioned before, I feel semi-comfortable with him riding alone around the suburban neighborhood in which we live. I know, I know. He’s thirteen years old, for God’s sake. Let the kid ride his bike. But this particular thirteen-year-old kid, even though he can talk now, still has sensory issues which can compromise his safety (and possibly the safety of others). What happens if a commercial truck drives right next to him and the rumbling (roaring, to him) of it jars him enough to make him wobble, hit the curb, and fall into the path of the truck? Or, if he appears to not be paying attention, the driver of the truck, or any vehicle, could sound their loud horn to alert him, and it would startle him enough to make him lose control of his bike and veer into traffic.

Then there are the flying insects. At any time while walking, if any flying insect, from a tiny gnat to a huge moth, happens to come near Nigel, he immediately begins violently shaking his head, flinging his arms around, and running away. This cannot happen on a bike on a busy street.

So I talked to Nigel about my truck concerns, about holding his line so that he does not wobble too close to traffic (“I hold my line,” he said in his deadpan voice), and about insects flying in his face. That sobered him for a moment, and I could see the wheels turning. Then he said, “We just need to extinguish bees with stingers. Or make flightless bees.” Flightless bees. Time to do a homeschool unit on pollination.

In the end I realized that, safety concerns aside, I have to get him a bike lock before he can ride his bike to the store anyway. So I’ve successfully put off the bikeriding-on-a-busy-street milestone for another day.

Nigel has a friend over today, whom I’ll call Riley. Riley has been Nigel’s friend for about five years, and while Riley has several other good friends he would probably rather hang with on a Saturday, he always makes time for Nigel and accepts him, autism notwithstanding.

Nigel has always been a social person, which I think is what propelled him to step outside of himself and learn to talk. When he was about five and not functionally verbal, he would approach NT kids at the playground and try to engage them the only way he knew how: laughter. The problem was that the kids would think that he was laughing AT them, of course, which caused a slew of problems necessitating me to intervene. I think it was because of these unsuccessful experiments in the social realm that Nigel decided if he wanted to have friends, he needed to learn to talk.

One of my favorite sites for autism information is Natural Learning Concepts, which recently posted an in-depth interview with Stephen Shore that I really enjoyed reading. Here is what he says about friendship: “It is my sense that people with autism don’t want to have friends is a myth.  What seems more accurate is that those of us on the autism spectrum have a different way of making friends.”  So profound and yet so simple. I wholeheartedly agree.

Making a friend was a huge milestone for Nigel. And learning how to keep that friend has also been a milestone. It hasn’t always been easy: over the years, Nigel has had outbursts at school, including some resulting in injury to Riley, that I’m sure have caused Riley to reevaluate if it would be advantageous to continue being Nigel’s friend. But Riley does and he is. His presence and his loyalty encourage Nigel’s self-esteem more than anything else, I think. 

God bless the Rileys of the world, and bless their parents for raising them to be such patient, understanding kids. We need a few more Rileys around.