One of Ours

I’ve done a bit of traveling – certainly not as much as I’d like, but enough to know not to try to shove a huge carry-on into the overhead compartments of a smaller plane. For that matter, my trip last weekend was a mere overnighter, and my stuff wouldn’t even fill one of the smaller rollers with the telescoping handles. I had three planes to board on the way there, and two on the way back. Five planes in the space of 36 hours. As I boarded plane number three at 5:30 AM, having been on planes or in airports since 6:30 PM the previous evening, I was tired and not in the mood for unsolicited comments.

I stepped into the plane and began making my way down the aisle, looking for my row, which was near the front that time. It was one of the smaller planes, but I figured I should still be able to fit my pliable bag with a change of clothes and a couple of paperbacks up in the bin. I lifted it up and was surprised to find that I could not wedge it in. I turned it to the side and it still wouldn’t fit. What kind of carry-ons were they expecting people to put up there – fanny packs?

I heard a woman’s voice behind me say, “It seems to be oversized.”

Before I even turned around I knew what I wanted to say. My bag was well within the size limits for carry-on luggage. In fact, it was considerably smaller than any other carry-ons I had seen. It didn’t even have wheels! I wanted to say, “It’s not ‘oversized;’ this compartment is too small! My bag is definitely smaller than anyone else’s carry-on!”

I turned around and saw a woman who appeared to be in her fifties sitting in her seat across the small aisle from me. And then the non-confrontational tone of her observation hit me, and I somehow knew. It came to me in an instant. She was one of ours. There was nothing else about her that would have “given it away.” It was just her tone. My radar kicked in, and I realized that she was merely making an observation. She was not suggesting that I had ignored the size regulations for carry-on luggage. She was not passing any judgments. She was simply commenting on the situation as it appeared to her.

“I’ll just put it under the seat,” I said as I turned around and sat down. If she responded, I didn’t hear her.

I watched her a little bit during the flight. She read a book, got up and went to the lavatory once. (‘Lavatory’ always sounds funny to me.) Whenever I caught her profile, I didn’t see much emotion on her face, but that tends to be the norm with people traveling alone. There was nothing else about her that could confirm my theory about her neurological status. But her voice, her tone, her choice of words – that was enough.

So as I’m making dinner tonight, I call Nigel in the kitchen to do one of the chores that he alternates with Aidan – unloading the dishwasher. Usually he balks at it, but he’s compliant this time, probably because I had allowed him to buy a small cat figurine at the store this afternoon. He comes in, begins putting the dishes away, asks me where a strainer goes, and he remembers on his own before I can answer him. Then he holds up the serving spoon that matches the silverware set and turns to me.

“It seems to be oversized.”

Yes. He does. He says the same exact words in the same exact tone as the woman on the plane. I feel the hair stand up at the base of my neck. I quickly regain my composure and tell him what it is and where it goes. And then for the second time I am really glad that I hadn’t been argumentative with the woman on the plane. I am glad that I waited that split second for the recognition to dawn on me before I spoke. I am glad that I had just let her make her observation and left it at that. She’d probably had many negative experiences with people yelling at her and correcting her. I know because of my son. I have learned so much from him. Patience, for one. Open-mindedness.  Compassion. And I’ve learned that I don’t always have to be right. After all, if you look at it logically, my bag was oversized for that compartment. How could I have argued with that?!

New Year, New Behavior, Part 5

“Back to School” is in September on most people’s calendars. But for Nigel, it’s the second week of March. At least this year, anyway. That’s when he will be starting back at the middle school for the last three months of eighth grade. The details will be hammered out at his IEP meeting early next week, and I am already preparing my arsenal of points and questions for the team. Nigel had initially indicated some interest in attending his IEP meeting for the first time, but when I brought it up with him earlier this week, he had reconsidered. This got me wondering if he is indeed ready, even with the new medication.

When I picked him up from his social skills class on Monday, his behavioral therapist told me that he’s been doing really well. He walks around the school with her to pick up the other kids who attend the class, and he is comfortable doing that. Wait. This is Big News. Let me reiterate that. He is now comfortable walking around the school. He has come a long way from how he felt just a few months ago, when I wrote this post in October, which describes his fears and anxieties about being back on campus when his weekly social skills class first started.

So as we drove home after class this week, I asked him, “Do you think you’re ready to go back there for two classes a day?”

And this is what he said, in his steady, beautiful voice: “I think I’m ready to go back for a full day.”

Had I not actually been driving the car, I would have had a much harder time regaining my composure. My son is so brave. And my heart leapt just thinking about his indomitable spirit, after all he has endured. But we’re going to start him off with two classes, just to see how it goes. I’m still so concerned about the bullying. He’ll be thrown in with the same kids, and while I’d like to think that in his fifteen-month absence they might have gained some maturity, I’m not betting on it. But I’m hopeful.

Knowledge for People

Every once in a while I think about the fact that, living in a developed country, we have so many autism resources available to us that are not available in developing countries. And not only resources, but the knowledge itself. The knowledge about autism. We know that it is not the mother’s fault. We know that the child is not possessed by demons. We know it is a neurological disorder and have the resources to obtain necessary therapy, treatment, and education. But others less fortunate do not.

And so I would like to highlight a very special organization, one that I am excited to have found out about, and one that I already feel so passionate about. Knowledge for People is a new non-profit whose focus is to provide  autism education to families and teachers in developing countries. This is their mission statement:

In many parts of the world, there is an extremely limited understanding of autism. Many communities and rural villages in developing countries lack adequate resources and are often unaware the disorder exists, even though it is occurring in children and adults around them. People see the symptoms and effects of autism, but often don’t know what is wrong or how to help.

Our goal is to provide these communities with a greater understanding of autism, its effects, and ways to manage its effects. Through outreach, education, and support, individuals with autism in developing countries around the world will be better understood, accepted, and integrated into their respective communities. Understanding of autism can positively affect families, schools, and the societies as a whole.

Knowledge for People’s first project is to do an outreach educational program in Nepal this summer. They will be working with parents and teachers to provide basic autism education and also to provide behavioral strategies, sensory ideas, etc. They will also be giving presentations, conducting individual case studies, and possibly doing a radio/TV broadcast. They are looking for volunteers who are knowledgeable about autism to go to Nepal with them, specifically speech and behavioral therapists. If you fall into this category and have the last two weeks of July open, please email: info @ knowledgeforpeople.org. They need your help!

Imagine having a child with autism but not knowing what autism is or how to help your child . . . Imagine not having services at school for your child . . . Imagine your child not being accepted into the community because people are unaware of autism . . . These are just a few reasons why Knowledge for People is so important. I hope you’ll join me in supporting them.

Connected

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.

I came away from this weekend 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.

If I Blogged 10 Years Ago

I confess. When it comes to blogging, I do a lot of lurking, especially when I first discover someone’s blog. I feel like I need to get a sense of the person before I reach out. But I also lurk because sometimes, like when I’m reading about someone who’s just beginning their journey with their autistic child, I become lost in my memories. It’s been nearly twelve years since I began my journey, when Nigel was two and a half and I thought, Hmm. He’s not talking. He often doesn’t react when people talk to him. He can’t seem to interact with peers. Autism was the farthest thing from my mind. The child development books I owned barely mentioned the A word. “Autistic children do not show emotion or affection,” they said. “They live in their own world.” That told me nothing.

Thus began a process of referrals and testing and ultimately a diagnosis that, at the time (1997), confounded me. I went back to Barnes & Noble and found a copy of the DSM IV (first edition), looked up autism, and realized that it was quite different than what I had thought it to be. And I knew then that my son had it. No question. He fit all of the criteria. Every single one. I put the book back on the shelf and went full throttle into his intensive ABA-based therapy. It was certainly gentler than full-on Lovaas (Nigel’s program did not use aversives), but the frequency at the center combined with the home visits proved to be effective and beneficial. Nigel improved, but he did not “recover.” I slowly realized that was not going to happen.

And so, if I had blogged ten years ago, when Nigel was four and a half, I would have written on a daily basis about things very different than what I write now. There would be no Boy Scouts, no Nigelisms. No posts about how well he now does in grocery stores. Ten years ago I would have written about the veritable riots he had in grocery stores, malls, restaurants, while having his hair cut (even at home), and going to the doctor’s office. I would write about how he shrieked and writhed on the floor when I had to take him into public restrooms. How he wailed if anyone even walked past the door where the vacuum cleaner was kept. I would write about how fearful he was of hearing tests, even though I held him on my lap the entire time he screamed, and his traumatic lead testing experience. I would write about my frustration explaining to friends and relatives why he did the things he did. I would write about my joy if I found a helpful autism book, because there were so few then. I would write about Nigel’s rampant echolalia at age four and a half, how he often tried to use memorized lines from movies and fit them within the context of the real situation. I would write about his hyperlexia, teaching himself to read at age three and a half, before he could talk. I would write about how he greeted visiting relatives by reciting their license plate numbers instead of saying hello. I would write about PECS cards, visual schedules, home visits, and the dedicated therapists who tirelessly worked with him. There would be talk of the precursor to IEPs, the IFSP (Individualized Family Service Plan) meetings, which we attended every few months.  

If I blogged ten years ago, I would mention my fears that two-and-a-half-year-old Aidan also had autism. He exhibited the same extreme sensory issues as Nigel, and also had a significant language delay. But Aidan made eye contact. He didn’t line up the Hot Wheels cars along the back of the couch and tilt his head while staring at them, as Nigel did. I figured maybe Aidan had a touch of PDD, but I could see the difference between my boys. Even so, some of Aidan’s sensory issues turned out to be worse than Nigel’s, particularly his oral defensiveness and proprioception. I enrolled him in the same center where Nigel received his therapy, and Aidan received some OT and speech. (He was in speech until he was almost ten, and also had an IEP until then.)

Ten years ago, I would write about just trying to get through the day. At that point, I couldn’t even think about the future. I couldn’t imagine what my boys would be like at twelve and fourteen. I was just so preoccupied with helping them to be as comfortable as possible in this world. And trying to keep my sanity because I was so isolated.

And so, when I read those blogs written by parents of children much younger than mine, I don’t want to come off as a know-it-all when I say this, but I say it with true empathy and understanding: I know what you’re going through. I’m there with you. I remember it all. You will get through it and your child will improve. He or she may not be able to do what Nigel or others can do now, but in many ways he or she will progress. Your child will not be the same ten years from now. And neither will you. (And I mean that in a good way!)

Obsessions: The Good, the Bad, and the Ugly

I loved tigers when I was a child. I collected tiger stickers and books about tigers; I lived for Wild Kingdom episodes about tigers. In fact, I still love tigers. In adulthood I’ve acquired two four-foot-long stuffed tigers, various tiger photographs and wall art, and even a tiger tattoo. It’s really the only obsession that’s stayed with me into adulthood. During childhood, I went through various flash-in-the-pan obsessions. I had my rainbow phase, my unicorn phase, my I-must-be-adopted-and-I’m-really-a-long-lost-princess phase. When I was interested in those things, I lived, ate, slept, and breathed them until they ran their course.  

Because of this, I completely understand my son’s Obsessions of the Week. Unlike his lifelong Lego obsession, the Obsessions of the Week don’t last too long and then fade into the background. They are often revived, and never completely abandoned, but they also never exist with the same intensity as their initial flare. Some are all-but abandoned, meaning that even though Nigel is no longer obsessed with them, he refuses to part with their physical manifestations. Take, for example, his popsicle stick obsession. I always thought that he was keeping them for one of his projects, and when he never made anything, I asked him if we could get rid of them. Noooo! He was saving them because he likes the riddles printed on them. Then there was his acorn obsession. Living in a suburban area and taking many camping and hiking trips on top of that, he accumulated an entire dresser drawer full of acorns over the course of about a year, thanks to a love of Scrat from Ice Age.

His other old Obsessions of the Week fall into various categories. He became obsessed with making things that (fortunately in most cases) never materialized: his own Rube Goldberg maze, his own Jurassic Park, a homemade spacecraft, a bomb shelter, and a covered wagon. Many of his obsessions are movie-related: The Goonies, The Terminator, Indiana Jones, Star Wars, Dare Devil, Spiderman and Superman, King Kong, Back to the Future. And many others are history-related: World War I and II, the Civil and Revolutionary Wars, the Cold War, Vietnam, Titanic, the Oregon Trail, Clovis people, Ancient Greece, and various natural disasters, especially involving tornados and volcanoes.

But, like me with the tigers, Nigel also has obsessions – besides Lego – that have stayed with him a remarkably long time. He is a rock collector. We have baskets of rocks of diverse sizes and types all over the house. And sticks. Nigel has a fascination for sticks that I’ve never understood. That and the trash hoarding. He has drawer-fulls of trash in his room. Food wrappers, papers, pieces of plastic, bottles, lids, cans, packaging – the list goes on. I’m not sure how to deal with this situation. I think that it’s part of his OCD symptoms, but I’ll need to look into it further and discuss it with his doctor. In any case it falls outside of the cute and manageable Obsession of the Week criteria. He also exhibits other compulsions and rituals, like having to do some things in a certain order and needing to somersault down the hallways of the house to get from room to room. Those things don’t concern me too much, but the trash does.

And so I love the easy Obsessions of the Week. Aside from having to put up with a few one-sided, rapid-fire monologues and talk down some unrealistic notions, they are cute and manageable. This week’s obsession can easily be identified by walking through the house and noting things that Nigel has left out in various rooms – pincushion, scissors, thread. He has been sewing again. He had some leftover pelts from his Chimera project and turned one of them into a furry wallet. He also made a hat for Mrs. Brisby. I always thought she looked cold in that movie. Maybe Nigel thought that too, animal lover that he is. I just thank my lucky stars he’s not one of those kids that brings home all the strays!

Our Jetson Life

It was back-to-the-grind today, after a 3-day-weekend suspension of reality. Back to school (for Aidan), work (for me), and homeschool (for Nigel and me). And back to Nigel’s hourly teenage lament: Why me?

It’s not, as I initially thought, concerning his disdain of having autism/being autistic. At least not yet – I’m sure that will come up in another year or so. His “why me?” does not extend to big-picture malaise at this point. Right now he’s more put out by two things: getting a problem wrong on his schoolwork and having to pick up after himself. And I’ve heard “why me” enough times to wonder if it’s simply echolalia. He heard it somewhere and he keeps repeating it.

In a sense, why me? is typical – a declaration of universal teenage angst. I distinctly recall moaning it as a teenager when I had to switch high schools in the middle of junior year. Or when I felt a big zit forming (which was far too often). But I wouldn’t question why me? if I missed a homework problem, and especially not about picking up after myself. What is up with that? The schoolwork I can understand. It’s not a self-esteem issue with him. He’s not saying “Why me?” because he thinks he’s not smart enough. He’s saying “Why me?” because he doesn’t want to do the work over again. He already did it. He hated it the first time. His hand still hurts, and he doesn’t want to do it again.

We get the why-me?s in adulthood too, of course. When we get in a car accident or get a speeding ticket. When we lose our job. When a spouse leaves, can’t deal, or dies and we have to raise children alone. When we get cancer. When our child is diagnosed with autism. When we think we’ve accepted the autism but our child’s school has called us at work three times in one week to tell us that our child needs to be picked up because of behavioral issues and so we ask, why me? Why me?

I’m sure that in the mind of an autistic fourteen-year-old, his why-me?s are just as valid as an adult’s. Picking up after himself on a daily basis is just like having to do schoolwork over again. He just did it, and now he has to do it again. Why me becomes a refrain, a battle cry even. His autistic mind cannot accept the fact that picking up after ourselves is part of daily life. It is a life in which he craves social interaction, but not society. Not with its standards and expectations. He doesn’t understand why these things must be so, nor does he care. When I maintain that we pick up after ourselves because we are not animals, he retorts, “But we descended from apes!” I don’t see a way out of this one, even after I point out that not everyone agrees with that theory.

“Then we should have robots do the picking up,” he says with certainty, convinced that this straightforward idea solves everything and should be implemented immediately. As if it were feasible.  As if we had a robot just taking up space in the hall closet, and it was a simple matter of just taking it out and turning it on, and it would be programmed to pick things up and put them where they belong. Who are we, the Jetsons? Are we living on the Sci-Fi Channel? Is it 2409?

I just have one more question. Why me?

Rain or Shine

As with most much-needed, much-enjoyed mini-vacations, it was over too soon. It rained half the time and was a bit cold, but we loved every relaxing, silly minute of it. When it wasn’t raining, we walked, beachcombed, built dams, and hot tubbed. And when it rained, we played games (Clue, Jenga, Pass the Pigs, Sorry, and Scrabble), cooked together and ate (a lot), watched movies, laughed, talked, read, popped corn, and listened to music. We communed. In a word, it was restorative. Here are some highlights . . .

“Our” beach, a quarter-mile from the California-Oregon border:

Nigel builds a dam with his uncle as Baxter the dog approaches.

Aidan and Nigel goof off in the cabin:

And, my favorite: Nigel bonds with his new cousin. “He somersaults like I do!”

New Year, New Behavior, Part 4

There are times when we wonder why we waited so long to do something. Why we fretted, why we were hesitant. This is one of those times.

My family’s sensitive genetic makeup is such that we respond almost immediately to anything in our systems, whether it’s ibuprofen, caffeine, cold medicine, or stronger stuff. With prescriptions, doctors warn us that it may take two to three weeks to see any differences. With us, it’s often by the end of the second day. For instance, eleven years ago when I was on Zoloft for OCD and anxiety, I felt noticeably better on the second day after starting it. I felt so much better that I wished I had started sooner, that I hadn’t kept putting it off.

Last weekend, Nigel began his experience with Risperidone. His doctor started him on a very low dosage, and the literature included with the prescription mentioned that we probably wouldn’t see any behavioral changes for about two weeks. At the end of the second day, I could already see a difference. He was not argumentative. He was more complacent, relaxed. He was agreeable. His behavioral therapist also noticed it at his social skills class the next day. This is the kind of improvement we need for him to be able to go back to regular school. Of course, now that his body has adjusted to the very low dosage, he is no longer as agreeable as he was for the first few days, which I expected. We see the doctor in two weeks whereupon the dosage will be increased. But the process has begun. And it’s working.

And so, since I can already see how much this medication will help Nigel with his socialization goals, I can’t help but wonder why I was so reluctant to get him started. Why didn’t we do this before? Why did we constantly bang our heads into the wall (literally) in frustration, when we had options? Why was I so fearful of going this route? I don’t really know, but it’s not worth it to me to obsess about it any longer. Life is about learning. We learn and then we continue on. We make adjustments and we move forward.

Part of moving forward for me is recognizing when I need to take a break and then actually doing it. We tell our kids to let us know when they need a break, but we tend to ignore our own needs. When you have a lot of plates up in the air, it’s hard to justify walking away from them to take a break. But I know I need one, and I know my boys do too. So we’re packing up and heading out. This little clan is going to the coast for the weekend. We’ve rented a small cabin right on the beach, and my sister and brother-in-law are joining us. It’s a place we’ve been to before, one we all love, but we haven’t been there for three years. And that’s just too long. Nigel came to me last night at midnight, red-eyed, asking, “Mom, are you sure you remember how to get there?” He is so excited; he’s beside himself. This morning he actually said, “I am overzealous about going to White Rock.” He and Aidan have been counting down the days. So that’s how I know – we all need this. And I shouldn’t have waited so long to do it. So whether it’s trying new medication or taking a break when we need to, I’ve learned not to put it off. I’ve learned not to be afraid. I’m letting the plates fall where they may, and we’re taking off for a few days. Ciao!

The Great Debate

I get a lot of page views as a result of some head-scratching search topics, as most bloggers do. Some of the searches have absolutely no relevance to what I write about, and some are quite funny. But here’s one that’s funny and relevant. In fact, I’d have to say that this one wins the prize for Funniest Search Topic of the Month, although I get the impression that it wasn’t necessarily supposed to be funny. Okay, here it is –

“autistic teens wear boxers” and “autistic teens wear briefs”

For what purpose would one need to know this? A survey? A parent checking on the general consensus before heading out to Target? After my laughter subsided, I was intrigued. I guess it could be a valid concern. It just looked funny in my list of searches.

And for the record, the autistic teen who resides here wears boxer briefs. Has for years and loves them. Now you know. Just in case the person who typed that search decided to check back.  And I’m not laughing at you, I’m laughing – oh, you know.