Teen Autism

 My first official (almost) Wordless Wednesday offering:

The Terminator and his sidekick, The Angel of Doom.

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!

Aidan 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 . . .

For the past week, since my sons returned from visiting their father for seven weeks, I’ve had a new name. This happens every year, and I’m sure many people in joint custody situations experience something similar on a more frequent basis.

I am Dad-Mom.

Either of my sons will come up to me to say something and will address me as “Dad,” and then immediately correct themselves with “Mom” in the same tone. They do it so quickly, in the same breath, that it becomes one word: Dad-Mom. (The reverse is true when they first arrive at their father’s house for the summer visit; he is addressed as Mom-Dad for about a week.)

I love my transitional identity, and I love how the boys laugh when they say it. It only happens for a little while once or twice a year, so it’s special to me. And I guess it’s like payback for all the times I call them “Ni-Aidan” or “Ai-Nigel.” That happens all year long!

My sons returned late Saturday afternoon! The longest time of not seeing one another (seven weeks, two days) is over!  And now, Nigel and I stand eye to eye, nose to nose. Aidan, with his short hair and deep tan, I hardly recognize. But I know their scents, and their embraces.  It’s so good to have them home.

This was their seventh summer in LA with their dad. In previous years, they have also visited him for one- or two-week increments at Christmas or Spring Break. Usually I drive five and a half hours to a junction just north of Stockton, California, which is near the half-way point between my house and their dad’s house. Their dad meets us there for lunch, and then we transfer suitcases and bags, sometimes bikes and skates, into the other car. And then we transfer kids. I call it the 700-Mile Kid Swap. Then I turn around and drive five and a half hours back home. It’s a hell of a thing to do six times a year.

So my son’s young lives have been filled with many good-byes and as many reunions. It is a different way to grow up from what I experienced; my parents remained married throughout my childhood. I had friends whose parents were divorced, but in southern California, the other parent was never more than an hour’s drive away, not eleven hours. I often wonder about the emotional long-term effects of this arrangement on my kids. I know it’s hard on me, and I’m an adult. Aidan once said to me, when he was seven, “I feel like I have two lives.” Kids shouldn’t have to feel that way.

But it’s important that they maintain a good relationship with their father, and I think in the long run they’ll realize that we did the best we could to achieve that, given the circumstances. The 700-Mile Kid Swap has taught them flexibility and patience, two skills that are invaluable for autistic kids, and difficult to learn. They’ve had many great experiences in LA that have enriched their lives, and they’ve learned to appreciate and adapt to a different environment. It’s not the typical joint custody arrangement, but for the most part, it’s working.

As for me, I’m just glad they’re back. I’m going to get some more hugs right now . . .

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.

My younger son Aidan graduated from elementary school today! If I feel this much pride and emotion for elementary school, how much more will I feel for the bigger milestones? His Kindergarten teacher got up and said a few words about his class and I felt a little lump in my throat. Because not only did I feel that way about my own child, I did about so many children in his class. I have watched them grow up for the past six years, and they are such a wonderful, cohesive group of kids. Of course, I don’t know all of them, but I am glad to know the ones I do, and their parents.

I am so proud of Aidan! He did very well this year, worked hard and accomplished a lot, including the beginnings of a book! It’s called ETB: Experimental Tested Bomb, sort of a sci-fi novel with a solid main character and intriguing plot. Writer-Mom is thrilled about its potential! He had it with him at the graduation, the printed first chapter rolled up in his lap.

Big brother Nigel was also excited, and enjoyed sitting in the audience with his parents (their dad drove up from LA to be here), watching his younger brother do what he did two years ago, seeing his previous teacher (who also taught Aidan), and some of his friends who came with their younger siblings. In Nigel and Aidan’s classes all through elementary school there were five sets of siblings with the younger ones in Aidan’s class and the older ones in Nigel’s class. They’re a great group of kids, and I’m proud of all of them. I think that’s one of the many novelties of having kids: watching their friends grow up too, and caring for them. There’s so much room in the human heart.   

Fourteen years ago I celebrated my first Mother’s Day as a mother-to-be. My then-husband gave me a card saying what a wonderful mom he knew I’d be, and my own mom gave me a card with the same sentiment. I think back to the person I was then, not having any idea of the depth of emotion I would experience because of the little person in my belly and the one who would come after him.

Being a mother, autism or no autism, has taught me more about life than anything else I’ve experienced. Just the knowledge that it’s my job, my responsibility, to give these guys all the tools they need to lead a successful, happy life is enough to blow my mind. There are plenty of articles and books out there about how to raise good kids, how to be a better parent, but nothing can really prepare you. You have to jump in with both feet and just trust that you’ll be okay. That you’re going to make a few mistakes, and you’ll run into a few rough spots, but you’ll handle them. You’ll get through it and keep going.

As we moms know, being a mother isn’t always easy but it’s always worth it. We live for the days when we take our kids somewhere that they thought would be boring, and then not only can we tell that they really like it (as we knew they would), but they come up to us and hug us and say, “I really like this place, Mom. Thanks for taking me.” (That was Aidan at a museum last weekend.) And we live for the days when our children receive special awards or when, for the first time, they apologize for their behavior on their own instead of us having to do it (that was Nigel recently). We savor the triumphs, be they large or small, and think We’re getting there. I must be doing something right.

And the day will come when they are on their own. Even those of us with differently-abled kids will go through this change, on some level. I often wonder how I will feel when that time comes. How hard will it be to let go? It’s hard enough for me to let them ride their bikes to the grocery store! But I take comfort in the idea that it will happen little by little, just like how Nigel learned to talk, how he’s learning to be responsible for himself. I also take comfort in knowing that I will always be their mom. Nothing will change that.

So, here’s to all the good moms, like my own (love you, Mom!), and my friends who keep me sane. We need all the support we can get, in all the mothering stages of our lives.

We have a new little girl in our family! She is so sweet, inquisitive, and pretty! We are all in love with her already. She came with the name (from the local animal shelter), and we decided to keep it because she answers to that. She curled up for a nap after exploring the house for four hours. Nigel was quick to point out, “She’s our own Queen of Sheba.” Midnight, our other cat, is not yet convinced.

Tonight is movie night with the boys; we are making raspberry snowcones and watching Best in Show, one of our favorites. TGIF!

Aidan: Why the heck, Nigel, is your stick in my room?

I overheard Aidan say this last night as I was walking down the hall, and I empathized. I, too, have found Nigel’s sticks in many places throughout the house, including the kitchen, the living room, the car, my desk, and my bed. Nigel’s stick obsession has probably been lifelong, and to the best of my knowledge, neither he nor anyone around him has ever lost an eye, thank God. I’m not sure where this obsession stemmed from, but it’s most assuredly not abating any time soon. And I bet one of the things he loves about Scouts is being able to handle sticks on a regular basis.

But the real reason I’m writing this post tonight is to highlight Aidan. He’s been feeling a little like second fiddle lately, aware of all the writing I’ve been doing about Nigel on this site, even though I’m careful to minimize the screen when he (Aidan) comes in the room. He’s been pretty verbal about his feelings, too, accusing me of going easy on Nigel and not being fair, playing favorites. I try to spend as much alone-time with Aidan as possible, let him know how loved and important he is, but I can imagine it must be so hard for him. What’s not fair is that he’s the younger brother and he always feels like the older brother. What’s not fair is that as much as I try to ease the burden of him having an autistic brother, it’s still there. And it always will be.

Siblings are the unsung heroes of autism. Parents, therapists, caregivers, and teachers are openly praised – and deservedly so – for all their efforts with the autistic people they work with and care for. But the siblings are not often highlighted, and they should be. Some siblings have had to share a room for years and learned to tolerate the noises and habits of someone who doesn’t talk, or whose speech is echolalic. Some siblings have gone to the same school and had kids come up to them, many times, to say, “Did you hear what your brother did today?” And in spite of all that and so much more, they take it in stride and learn to love this person who seems so different and strange and often annoying. The siblings know that even if they’d like to poke their autistic brothers in the eye with the very sticks they leave in their rooms, it’s just another thing they’ll have to live with, and they do. Maybe not without exasperation, but with acceptance nonetheless.

Aidan, I’m so proud of you.