Teen Autism

Sometimes I think that the last sixteen years of my life have all been one big Plan B. One long divergent path. Sixteen years ago I graduated from college and, through no fault of my own, started having children long before Plan A had stipulated. Having two children with special needs was not in Plan A. Autism (although it starts with A!) was not in Plan A. Divorce - no. Single parenting? No way in hell was that part of Plan A.

And so I learned that I didn’t just need to have a Plan B, I was constantly living it. We all do to some extent - life takes different twists and turns, and we all must adapt to change, some of it completely unexpected. Plan B has to happen whether you planned for it or not, whether it was an actual plan or a split-second decision. You go into the grocery store, race around throwing a few things into your cart, hoping that your distressed autistic child can hold it together for just a few more minutes, and then someone turns on an electric coffee grinder and it all goes out the window. Your child shrieks and tries to bolt, and it’s time for Plan B. You leave the blasted cart in the blasted store and carry your hysterical child out to the blasted car, dragging your other reluctant child by the arm because you can’t leave him in the store because he’s a toddler for God’s sake and you’re a blasted single parent. Everybody’s either shrieking or crying or kicking you or pulling on you or staring or shaking their heads at you. And you still didn’t get the few groceries you needed. Plan B sucks. Sometimes, even, it’s the loss of a job, a home, or a loved one - and then Plan B takes on a whole different persona, a whole different significance. It’s no longer just a new plan. It’s a safety net. Those, of course, are the most life-altering Plan Bs of all.

But I’ve also learned that Plan B, whether big or small, doesn’t always have to suck. Sometimes Plan B can even offer some comfort in disguise. And even though it’s not what you wanted or hoped for, you can make it work. It’s not Plan A, but in most cases, you can live with it, sometimes because you have no other choice. Slowly you get used to it. And you might even warm up to some aspects of it. 

My latest Plan B, in a long string of Plan Bs (sixteen years’ worth), involved what to do after I’d moved my two teenage boys seven hundred miles away to live with their father in Los Angeles while I stayed in Oregon to sell the house. First, Nigel’s IEP wasn’t amended so that he could go to a special school for students with autism. So we came up with the Plan B of their father moving to a better school district in the L.A. area, one that had a good special education department. Meanwhile, I felt so confident with the timing of this major change in our lives that I was certain my house would sell before August. Surely one of those two things would work out. But neither one did.

So technically, we’ve moved onto Plan C at this point, or perhaps Plan Q by now. The boys are coming back to Oregon and will attend the same schools that they did last year. I have taken my house off the market. I’ll have to work extra hard to get Nigel’s team to meet his academic needs, which is the whole reason why I wanted him to go to the special school in the first place. But here’s the wait-a-minute moment, the half-the-battle factor - Nigel loves his school here in Oregon. He has friends here, he’s comfortable here, he’s safe, and he’s happy. Why would I want to mess with that?! Well, there are two reasons why - one, his father’s not here. Two, the school hasn’t yet figured out how to teach him to work independently. And those are pretty significant reasons.

In spite of that, every day I’m feeling better about this particular Plan B. The boys will be back at familiar schools in which they are comfortable. And I don’t have to find a new job (even the thought of that was a huge stress for me - those of you going through it, you have my deepest empathy). Those are pretty significant reasons too. And so, although Plan B isn’t what I’d hoped for (is it ever?), I can live with it. It might turn out just fine after all.

These photos are of our much-loved and oft-climbed tree, which split in half a few years ago during a storm. The stronger half is still standing in our front yard, and the firewood from the weaker half lasted a long time. 

What do you do when things don’t go the way you’d hoped?

Please join me at Hopeful Parents today.

I just finished reading an amazing book called Fearless Nest: Our Children As Our Greatest Teachers. So many of the beautiful stories in the collection resonated with me. And one thing the book really has going for it is that my friend Carrie is one of the contributors! In addition to that, it got me thinking about what I have learned from my children. What I’ve learned from Aidan deserves a post of its own, but for today, I’ll write about what I’ve learned from Nigel.

It’s the power of belief.

But I’m not just talking about the belief I have in his potential, or that he would learn to talk, that he could be mainstreamed in school, that he would learn to regulate his behavior. All of that involved a tremendous amount of belief, and, for that matter, it still does. Because I truly believe, in spite of all his challenges both past and present, that he will be able to navigate adulthood with some degree of independence. Most of all, I believe he will find people who will appreciate him, and he will have friends and be happy. Even if his connections aren’t typical, I believe this with all my heart.

And I believe that he will follow his dreams in adulthood, because he already does. Since his early years he has been a huge Disney fan. He loves the characters so much that he thinks of them as friends. In fact, his stuffed Tigger prompted him to speak one of his first words and start showing some imaginative play. These days, he owns almost all of the Disney movies, animated and live-action, the older ones as well as the newer ones with Pixar, and he rotates watching them. These movies have taught him how to talk, how to interact with people, and how to tell a story, among many other skills. But mostly, they comfort and entertain him. They are a big part of his life and he loves them.

For a few years now, he has talked about a movie idea he has that combines all of his favorite animated Disney characters. I’m not clear on the plot details, but it involves him becoming an animated character and going into their world (a la Roger Rabbit, I suppose) to help save them from a new Disney villain, worse than all the Disney villains combined. A few weeks ago, he wrote a letter to the Disney Corporation outlining the plot and asking if they would be interested in his story idea for a future film. He typed it on his computer, printed it out, folded it up, put it in a #10 envelope, and addressed it by hand, which is no small feat with his dysgraphia. He sealed the envelope and came to ask me for a stamp. I mailed it the next day, not knowing what he had written, but hoping that it was coherent enough for them to at least send him a form letter thanking him for his interest. I told him that the Disney Corporation probably receives hundreds of pieces of mail daily and that it might take several weeks before he received a reply, if any. I tried to let him down easy, gently prepare him for disappointment.

But he believed.

My boy believed so strongly that he would receive a reply within two weeks. After the first week, he said to me, “It’s been a week now. My response from Disney should be arriving soon. Let me know when it comes in the mail, okay?” And I again reminded him that Disney may not be able to answer every letter they receive, etc. Still he believed. And I suppose I should not have been at all surprised when, on day eleven, a letter arrived from the Disney Corporation addressed to my son. He was shaking as he opened it, saying, “I knew they would reply!” And they did, within the timeframe that he believed they would. It was such a generous response - not a form letter at all. The kind soul who had opened my son’s letter had taken the time to write a personal response. She told him that they would probably be interested in his idea (he loved that part!), but diplomatically - gently - explained that due to legal restrictions, they could not pursue it. And Nigel handled it very well. He said that he understood and was okay with it. He got his response, addressed to him on Disney letterhead, and that was enough for now. His belief came to fruition.

And what do I believe? As we go forward with our out-of-state moving plans, I find myself faced with several huge unknowns, especially now that Nigel won’t be attending the special school we’d hoped for, at least not for a while. I don’t know where the boys will go to school. I don’t know when my house will sell. I don’t know where we’ll be living. I don’t know what job I’ll have. There is so much I don’t know. But Nigel has taught me to believe. And I believe that everything will work out as it should. I believe that all of our needs will be met. I believe that all that I seek is seeking me. I believe that all will be well. And that is enough for now.

Since the boys are gone this week for Spring Break (visiting their dad in L.A.) and I am feeling the usual disjointedness with them away, I figured it was time for another edition of Personal Posts. Because I’m sure you were all waiting for it with baited breath, right? No? Okay.

But surely you must be slightly curious about the raw food thing I wrote about last time. You might recall that I was pretty excited about it, and I still am, but I’ve had to slow waaaay down with it. I got a little overzealous and went 100% raw and lost weight that I didn’t need to lose (nor wanted to). While it’s true that many people go on a raw food diet specifically to lose weight and become healthier, I just wanted to become healthier and increase my energy. And I discovered that being underweight does not make one feel energetic. So I cut back to about 50% raw for the time being while I try to gain back the weight I lost. I know - that’s not something you usually hear - trying to gain back weight - but some of us unfortunately fit into that category. I am still having green smoothies for breakfast every morning, which I love. So, I’m not giving up on raw, but I have to find a way to do it without losing weight, and that may take me a while since I’m focusing on several other things.

And one of the things I’ve been focusing on is publishing my book. Like, really focusing, pushing myself. And I am thrilled to say that I’ve made significant progress! In fact, I hope to be sharing some exciting news very soon! Sorry no deets yet - that will be described in a post of its own, you can be sure.  But I promise I won’t leave you hanging for long!

In other news, we’ve lived in our current home for almost seven years, and the carpet is sporting seven years’ worth of stains and hard living (with two boys and various pets trampling it), so I’m having it replaced. I had hoped to have it done while the boys were away, but it turns out that the installers are on Spring Break as well. So it’s going to be done next week, and I’ve spent all of this week moving everything out of the rooms and closets - seven years’ worth of books, DVDs, papers, Lego, clothing, Nerf guns, action figures, cars, stuffed animals, and whatever else I stuffed in our back room, to be sorted later. Then I touched up the walls in the rooms that will get new carpet, and I used up a half gallon of paint just “touching up” the boys’ rooms!  Not to mention half a container of Spackle. God help me, boys are hard on a house!

But those boys are also the loves of my life, and I enjoyed talking to them on the phone yesterday. They are having a blast, spending time with their dad and visiting with L.A. friends, and they even got to go to Universal Studios! Nigel was ecstatic over the Jurassic Park ride, of course. Aidan, with his vestibular issues, preferred the Mummy ride. They had flown down again, their second solo flight, and everything went well. When it was time to board, I waited with them in line for a few minutes, and as they neared the ticket-taking agent, Aidan said gently, “Mom, I think we’ll be fine now. You don’t need to wait with us.” And Nigel chimed in, “Yeah.” So I tried not to cry and hugged them, saying, “Be safe and have a great time. I love you!” And as I stepped out of the line, an older lady a few feet behind us said good-naturedly, “You boys be good now!” And right then, at that moment in the airport, I felt like a regular parent. A regular parent saying goodbye to her teenage sons as they boarded a plane, trusting that everything would be fine.

I smiled and waved, watching them pull their carry-ons. And for the first time, I felt normal. I know - we shouldn’t use that word. I even discourage Nigel from using it when he describes non-autistic people, because I want him to think of himself as normal too. But the nonchalant way that woman said what she said, and the way I felt just knowing that I didn’t have to worry, I can’t think of another word for it. I guess the fact that I was aware of feeling that way negates the normalcy of it. But I don’t care. I felt normal, or what I assumed felt normal, and it was great, that little glimpse. And hard-won. I sat at the gate for a while longer, and then I watched the plane take off, taking my beautiful, almost-grown boys with it. And although I feel disjointed with them away, somehow it feels a little more manageable this time. A little more normal.

“If you’re one of these people considering giving up on blogging in exchange for paying more attention to Facebook, Twitter, YouTube and MySpace, or whatever else they throw at us mere mortals, bear in mind you are giving up on something rather unique and wonderful.”                —Hugh Macleod

The Teen Autism site description on Technorati says, “Life with an autistic teen and his younger brother . . . a parenting blog with an autism twist,” and that’s it in a nutshell. I write a lot about autism and my life with with my two boys. But what I haven’t written about here is my life as a blogger. And so when Corrie at Just Because My Pickle Talks approached me for an interview/guest post about my blogging experience, I happily obliged. That’s right - a hybrid interview/guest post! Corrie asked some great questions, and I wrote a post around them. Want to know how Teen Autism got started, what my future plans are for it, and how I incorporate blogging into my life? Please click here to read the answers to these and other intriguing questions!

You have to take the jump faster than you feel comfortable with.                                       - my younger sister, Macrina

Four years ago, two days after my 35^th birthday, my sister and brother-in-law took me snowboarding as their gift to me. At the time, I had snowboarded off and on for fifteen seasons, and they had skied for at least that long, if not longer. We all felt comfortable at our intermediate-to-advanced skill levels. As I recall, my sister had started doing some small jumps the previous season, and she wanted to practice a bit that day. I thought, Wow, I’ve been snowboarding a long time and I’ve never tried jumping. “I think I’ll try, too,” I said. I followed my younger sister down a few side runs and did some practice ollies, catching a little air off some bumps and landing solidly. It felt so exhilarating! There didn’t seem to be anything to it.  

Then we decided to try the real jump in the terrain park. We stood about a hundred feet behind the ramp, watching the person before us approach, jump, and land. It looked easy enough. It looked fun. I was game. My brother-in-law went next, executing a smooth take-off and solid landing. Macrina readied herself, and then she gave me her little tip about needing to go faster than I felt comfortable with. She took the jump the same as her husband, and then waited off to the side with him.

I can do this, I thought. I jumped out of an airplane and landed that jump just fine, so I can do this one. 

I readied myself and took off, keeping my eye on the ramp. I was certainly going faster than I felt comfortable with. In fact, as I quickly approached the base of the ramp, I realized that I was going faster than anyone would feel comfortable with. I suddenly knew that there was no way I could land this jump. That if I tried to land it, I would probably end up breaking both of my wrists, and do some severe ankle and knee damage while I was at it. In that instant, I remembered that people in accidents usually fare better if they relax their bodies rather than tensing up. I knew that my entire body would be ultra tense if I tried to land the jump. So, I made a split-second decision to pass out. As I hit the ramp and literally launched myself into the air, I willed myself to lose consciousness - right at that second. And that’s all I remember of the jump.

My sister and brother in law later told me that I even looked unconscious as I flew horizontally with my board in front of me, about ten feet up and forty feet across. I landed on my right shoulder, but I didn’t feel it. Thank God I was wearing my helmet, because I’m sure my head hit the ground just as hard. The first thing I remember as I was coming to was my brother-in-law leaning over me saying, “Did you get the wind knocked out of you?” I opened my eyes then, not remembering the jump and wondering what I was doing lying on my back in the snow. Moments later, as the Ski Patrol arrived, it started coming back to me. They asked me my name and my age, and I said 34. Then, either Macrina corrected me or I corrected myself, and we laughed that I had forgotten my age.

I ended up being snowmobiled out on a stretcher, as the Ski Patrol, who called a week later to check on me, were certain that I had broken my collar bone. I could not move my right arm at all. My sister and brother in law loaded me into the car and drove to the hospital for x-rays. My shoulder and chest were purple, and they would turn blue, green, and yellow as the weeks went on. I would later learn that my shoulder was separated in two places, but I did not break my collar bone. I was bruised and sprained in several areas and would need three months of physical therapy, but I did not break a single bone in my body.

For the first two weeks I was in constant pain and on Vicodin, but not enough to really dull the pain because I still had to drive and work, take care of kids, and pilot this life of mine. That’s what I feel like sometimes. Like I own an airline and not only am I the pilot but also the flight attendant, mechanic, customer service, ground crew, and the engineer. With my right arm in a sling, Nigel learned to scrape ice off the windshield in the mornings, Aidan learned how to work the microwave, and I learned to do a lot with my left arm. We managed. The bruising on my right shoulder and other areas of my body was like nothing I’ve ever seen before. Because I was going so fast, I think that it must have been a bit like being thrown from a vehicle, except I had a helmet on. So even though I did something stupid, something I had no business doing, at least I was wearing my helmet. I cried the first night, alone in my bed, in pain, angry at myself, not wanting to think about how bad it would have been if, instead of my shoulder, I had landed six inches to my left, on my neck. The helmet would not have helped.

So, after three months of physical therapy and three years of not being able to sleep on my right side, my shoulder has healed. I even went snowboarding again the next season! But I avoided the jumps, happy to just cruise around and carve my way down. Fortunately, my birthdays since have been much less eventful. And forgetting my age? That probably wasn’t the last time. In fact, I’m sure there will be plenty more opportunities for that in the future. But today, I’m definitely 39. 39 and feelin’ fine.

It’s time once again for another edition of Personal Posts! Some might recall that I started this series of posts back in November and, well, I started it. I haven’t written any additional posts on it since, and I figured it was time. Because, you know, I have such an exciting life and all.

When we last left off, I was not dating, and that is still the case. My co-workers and I recently had a good laugh over some headline we read that Kate Gosselin, with her new long ‘do, wants to start dating again, and I was like, “I don’t have time to date with two kids; how is she going to date with eight?!” But I’m thinking that summer might be a good time for me to try. That gives me ample time to finish up some projects and grow my hair back out. I had my hair cut a couple of weeks ago, and even though I went to the same stylist who’s been doing my hair for about five years, and even though I brought a photo of myself with the cut that she did last time that I loved, she wasn’t able to replicate it. It turned out completely different, and way shorter than what I asked for. And since, unlike Kate, I’m not into hair extensions, I’ll just have to wait a few months for it to grow out.

Next up is something I’m truly excited about - my plans to gradually switch to what’s called a raw vegan diet, or simply, raw foods. Back in September, I realized that I never felt that great. I felt like every morning I had to drag myself out of bed and had so little mental and emotional energy. I wasn’t sick, but I didn’t feel completely well. I had found out about the raw food diet through one of my clients at work, Raw Family Publishing, a year and a half ago, but at the time it wasn’t something I felt compelled to pursue. In September, I felt drawn to research raw foods due to my low energy level, and I read 12 Steps to Raw Foods. An entire chapter was dedicated to the subject of increased energy as a result of eating raw foods, along with many other positive effects. This is it! I thought. This is what I need to do!

But I knew that such a huge lifestyle change would need to be gradual for me. There are people who go 100% raw all at once, but I knew that wouldn’t work for me since I have two teenagers for whom I still need to cook. So I decided to start off with my breakfast and make that completely raw by drinking green smoothies every morning. I bought a Vita-Mix high speed blender (an investment, but worth it), and since the first week of November, I’ve had them every day. I’m convinced that when I was sick last month it would have been much worse if I’d not had my daily green smoothies. I’m addicted to them and cannot start my day without them! Since I asked Nigel and Aidan to be supportive, they humor me and refrain from making comments (especially the one who thought it would be a good idea to make a pizza smoothie). So I’ve got the raw breakfast down pat, and I’m slowly working my way toward a raw lunch, which I hope to accomplish in the next couple of weeks. Eventually, when I’m 100% raw, I’m excited to see if the amazing results I’ve read about will happen for me, like increased energy and time, two rare commodities around here.

The progress on publishing my book came to a grinding halt when the holidays hit, and if I don’t get back to it soon I won’t be able to live with myself. Unfortunately, this time of year is my busiest with my second job, which is seasonal. For my primary job, I am an account manager for a fulfillment company. One of my accounts is a music label with about 50 artists, and for my second job, I do their semesterly royalty calculations and statements. I’m about neck-deep in spreadsheets now. So, my friends, I’m afraid I’m going to have to cut back on posting and blogging (wah!) for a bit until I meet my deadline (meh).

If I can, I’ll pop in every now and then with a Nigelism or something, like yesterday when he got home from school and decided to take inventory of all the clocks in the house - his watch, everybody’s alarm clocks, the living room clock, the microwave clock, and whichever ones I’m forgetting. He then came into my office and announced, “Looks like all our clocks are out of order. But mine is the right time.”

Ba-da-bum. Cheers!

Part of the big let-down for Nigel and Aidan not making their flight to LA on Christmas was that their dad had purchased tickets for them to see Avatar that night. He canceled those tickets and definitely planned to take them at some point during their visit, of course. However, knowing that it’s a three-hour movie, I questioned whether Nigel would be able to sit through all of it - he usually doesn’t make it all the way through movies in the theater. He often needs a break from the sensory bombardment of a movie theater and has to take a few walks during the film.

But something tells me that he’ll sit through all of this one. I know because I saw it tonight, and I was enraptured. I got off work early to go see a late afternoon show, and it was sold out on a Tuesday. So I purchased a ticket for the 7 PM show and came back later. I, meaning myself. Flying solo. I am uber-introvert, going to movies alone and enjoying it. (I’ve taken myself out to dinner before, too.) I show up at the theater an hour early to get a good seat, and there is already a huge line. Even so, I am able to sit near the center, about three-fourths of the way back, which is my favorite area. I sit down next to a guy in his twenties with a scruffy goatee and watch as the theater fills to capacity. Moments later, I realize that not only is he scruffy, he stinks. I am accosted by the low-grade, but unmistakable, scent of permeating old sweat. As soon as I make this distasteful realization, another guy in his twenties with a full beard sits in the empty seat on the other side of me. They appear to not know each other, but they both are clearly hygienically challenged. The bearded one stinks too.

Are you kidding me? I yell in my head. What are the freaking odds? This is what I get for going to the movies alone! I get boxed in by two guys who are taking some time off from bathing. My olfactory sense is completely assaulted, and I momentarily consider leaving. How am I going to enjoy the movie while constantly inhaling these noxious fumes? But I tell myself that feces and vomit would be far worse and decide to employ shallow breathing and “tune out” the BO surrounding me.

And, no, nothing magical happened during the movie with regard to the stench. I wasn’t so enraptured by the movie that I didn’t stop every ten minutes or so and still notice the air around me. But it was tolerable, if only because I enjoyed the movie so much. Without going into a whole commentary about its humanitarian/environmentalist theme, I will say that it really affected me. What struck me the most is how we, as a whole, are perilously close to losing our sense of connectedness. I drove home crying, and it wasn’t because I’d been smelling old sweat for three hours.

I got home too late to call the boys. For some reason, I desperately want to talk to them about this movie, get their take on it. It’s obvious - missing them, I yearn to connect with them. But then I realize that I don’t need the phone to be connected to them. I can feel it at my core - the constant connectedness I have with them. It is always there. I know that they are well and having fun with their dad, while I enjoy some time alone. And I’m breathing more deeply now, too.

I am relieved to report that I am almost back to normal, after being sick for a full week. I haven’t been that sick in over eight years! In recent years, I’d been guilty of taking my health for granted - you know how when you’re well, you sort of forget what it’s like to be sick? Well, I do, since I’m not sick that often. Let me tell you, I will definitely be more conscious of my good health from now on.

But something else happened while I was sick, something I hadn’t expected. Included in all of the wonderful get-well wishes I received from my friends and family (thank you, everyone!) was a little advice in Carrie’s comment:  “. . . in the meantime, try to enjoy the down time!” It’s not something I’ve ever thought of doing while sick; it just either didn’t occur to me or wasn’t an option in the past, when the boys were younger. And granted, I still had to drag myself out of bed this week to get them off to school, pick them up, and make their dinner.  But aside from that, I actually took it easy. It’s sad how I have to get really sick before I force myself to slow down - because by then it’s not a choice. And so, I found myself with a little down time. I felt pretty lousy during it, but at one point I just sat on the couch, wrapped in my soft, warm robe with a down blanket over that. I drank a cup of tea. And I did nothing else. I just sat there. What an experience!

I just sat there and tried not to think about much of anything, like some of my sporadic attempts at meditating (which I haven’t done for a very long time). Thoughts would come, I would acknowledge them, and let them go. Thoughts of Nigel’s future, of my own, and how intertwined they will be. But the great part was that I didn’t attach any emotions to the thoughts, which was very different for me. Usually all of my thoughts have emotions attached to them. I can easily get emotional about things that have never even happened, just by thinking about the possibility of them. But somehow the illness gave me a sense of distance - a bit of a novelty, I must say.

So I rested. I read. I drank a lot of herbal tea. I forced myself to stay away from the computer. For the first time ever, I read the current National Geographic issue before the new one arrived (barely - the new one arrived today and it looks amazing). I noticed that National Geographic does not use a hyphen in “email,” so now I feel justified in not doing so. Who knows if I would have noticed that had I not been sick? All these hidden benefits - down time, thoughts without emotion, proofreading insight. I’ve been missing out.

But now it’s back to the grind - and Christmas a week away, no less. Fortunately, because I had pushed myself prior to getting sick, I have nearly all of my shopping done. And although I’m not completely 100%, I feel calmer than I did a week ago. I feel sane. I feel like I’m ready for the busyness of having holiday guests, cooking and baking, and getting the boys ready to go to LA to visit their dad. A lot to do, but I am rested and ready. I didn’t see it coming (getting sick) and thought I would totally fall behind, but it turned out all right after all, as things often do when you don’t fight what is. Sometimes, you get the rest you need, and you might even learn something while you’re at it.

Ugh. Sorry, gang, but I am sick. I usually go a year or more without getting sick, and when I do, it’s brief and relatively painless. I credit that to a mostly organic diet. But this time the bug really got me, probably from burning the midnight oil too much lately. In any case, it’s definitely going to be a few days until I feel human again!

And what’s the meaning behind the phrase “under the weather” anyway? I know I could Google it, but I’m too sick. Meh. Hope all is well with you and yours!