Category Archives: Emotions

Summer Blues

                                                                        Crater Lake

Is summer over yet?

Don’t get me wrong. I’m a heat-seeker. I thrive on the warmth, crave it all year. So I love the weather. But I hate missing my kids.

This is their ninth summer in Los Angeles with their dad, 700 miles away from me. For nine summers I have sat at my desk and stared at their pictures and talked to them on the phone. My “conversations” with Nigel haven’t always been on track, but he’s gotten better as the years have gone by. And I’m just glad that he has the ability to talk on the phone in the first place. Because that wasn’t always the case. These nine years have brought so many changes.

So I sit here, looking at my desk photos, clicking through summer posts from 2008 and 2009, wondering what the heck I wrote about when my kids weren’t even here. I wrote about several phone conversations, and I did a series on Nigel’s early development. I wrote book reviews and posted about miscellaneous autism and special needs topics. Last summer I wrote about my incredible trip to Nepal for autism education.

But this summer I find myself at a loss for material. My main sources of inspiration are not in my presence to say funny or profound things. Our phone conversations consist of what-did-you-do-today and I-miss-you and the occasional movie idea/obsession monologue.

But the real reason is that I’m not at my emotional best right now. I’m disjointed without my boys, I’m disappointed that my moving plans aren’t coming together, and I’m disheartened in general. Plan B will go into effect soon, and it’s a letdown. I can dress it up and say that I’m hopeful, but it’s not at all what I had hoped for. It just doesn’t seem right – or fair – to have the blues in the summer. But I do.

Emotional Rescue

Emotionally, we take flight when the strength of our passion exceeds the strength of our blockages; the floodgates open and we are free to feel fully.   —Daily Om

It wouldn’t be stretching things to say that I’ve been an emotional wreck lately. I’ve been pushing myself to meet deadlines both at work and at home, and it frustrates me to no end to not be able to meet my goals. I try not to let the reality of my situation—being a full-time single parent—get in the way of what I want to achieve, but the undeniable fact is that it often does. Combine that with my increasing concern over Nigel’s academic/work challenges and his social vulnerability, and it’s no surprise that I’m overwhelmed.

So, everything has been on the surface lately, emotionally speaking. Every day has been like a marathon. This week could not end soon enough. The boys and I got home Friday afternoon, did a bunch of chores, ate dinner, and then Nigel and I went to our local grocery store for a few things. First, we recycled our bottles and cans at those machines that count and crush them and dispense receipts for the deposit refund. At one point, the plastic machine got stuck, and I took a leap of faith and instructed Nigel to go inside the store and tell an employee. Okay, he said, and he went and did it. I had never had him do that before, but he certainly knows how to ask for help while looking for a certain DVD at the video store, so I figured he could do this. Moments later he returned and said that someone would be out soon to fix it. My heart nearly burst. I had no idea how it actually went down in there, but the end result was that Nigel got his point across. A guy came out in a few minutes to fix the machine, and inside I felt like a kid on Christmas morning. Even now, I never take anything for granted. Even the simplest of things.

Afterward, we went inside to wash our hands and do our shopping. Nigel found the DVD he wanted to rent, and it was only fifty cents. Without my prior knowledge, everything I had already planned to get was on sale – the organic butter lettuce, the Virgil’s Black Cherry Cream Soda, the Haagen Dazs dark-chocolate-on-chocolate ice cream bars. I could see Nigel across the store picking out some candy for himself, and even at fifteen, he just looked so sweet. I reveled in feeling my mother-love. It was like this little trip to the grocery store was my gift for having such a tough week. But the best gift of all was yet to come.

We got in line at the checkout counter and put our things on the belt. As we stood waiting, I heard a girl’s voice say, “Hey, Nigel, how are you?” This was not the first time someone had greeted him in the grocery store, and I quickly assessed her. Some kids make a show of saying hello to Nigel in a manner that indicates that they see him as a novelty. Some kids are nice enough, sincere even, but they don’t really understand him. And once in a great while, a kid will say hello to Nigel, and it’s real. I could tell instantly that this girl was real. She was genuine. Just lovely. Nigel said hi, accepted a hug from her (with his trademark stiffness, which didn’t faze her in the least), and then told her, “This is my mom.” She looked me in the eye, and in my ridiculous current emotional state, it was all I could do not to cry. I wanted to hug her. Because I knew. I just knew that she was the type of kid that we parents of ASD kids hope for. The angels that look out for our kids when we’re not there. I felt it with my entire being—she was definitely one of them. And so, suppressing my urge to throw my arms around her, I told her my name and shook her hand and smiled. And I hoped that my smile conveyed my deepest appreciation. Thank you, sweet girl. Thank you for caring about my son. For not only respecting him, but for including him. Thank you for being the wonderful person I know you are.

After our brief exchange, Nigel told her that he had rented The Time Machine. Not only did she say that it’s a good movie, but when he mentioned that it was based on a book, she knew who had written the book (H.G. Wells) and said that she’d read it and liked it! She totally gets him! Then she said a few more things to Nigel as I paid for our items, and she left. Nigel and I picked up our bags and walked outside. “She seems really nice,” I said. “Yeah,” Nigel said. “She’s in my theater class.”

The tears came then, and I was glad that it was now dark. I hoped that Nigel couldn’t see them, because they would be so hard to explain. Hell, I wasn’t even sure why I was crying. Was it happiness? Relief? Why do so many emotions—especially unidentifiable ones—drive me to tears?

In the end, I think I was just overcome with gratitude. Not just because she was so good to my son, but because, at that moment, she was unwittingly there for me, when I needed her most. At the end of a long, hard, emotional week, she was there. She’s not only Nigel’s angel, she’s mine, too.

Needs

I’m sure we’ve all done it at some point. We look through the photo albums, gaze at the images of our little ones and sit there, transfixed, in memory. We wonder – that thing he’s doing with clenching his fists – did that somehow point to autism? How he used to put his head back and say ‘aaahhh’ repetitively? The way he did the ‘5-point crawl,’ with his forehead on the floor? We just thought it was cute at the time, endearing. But he laughed! He smiled!

Of course he did, I remind myself. He still does. He was a happy kid then and he’s still, for the most part, a happy kid. School, high school, so far seems to be going well. Well in the sense that he’s getting where he’s supposed to be safely and on time, he’s not causing behavioral disturbances (to my knowledge), he’s not being bullied, and his new case manager is already working to meet his individual needs. Alas, his needs – that’s where the issues have come up.  

When we had our meeting in the spring, and Nigel made that comment about H.G. Wells and Jules Verne books, the special education coordinator had asked if weekly check-in meetings with him “would be fine.” She seemed to believe that because he is intelligent enough to read those books, he has fewer needs. I diplomatically explained that Nigel would need daily check-in meetings, that one of his areas of deficit is executive function. Last week, at the end of the first two weeks of school, his case manager emailed to gently suggest that she sensed that Nigel might need two daily check-in meetings, as well as aides in all classes. Oh, blessed email! Blessed case manager! I wanted to hug her through the Internet ether, even though it pained me to admit, readily, that she was right. He needs even more assistance than I had thought he would.

At his IEP meeting the next day, which Nigel attended, things went perfectly. I think it was one of the best IEP meetings ever. Nigel presented himself exactly how he needed to – instinctively, it would seem. There are times when he lets his best efforts propel him through a situation, but this was not necessarily one of those times. He answered questions, but he allowed himself to be himself – he spoke in his low, halting voice, with a lot of pauses and ‘eh’ and ‘hmm’ between words. He took extra time before answering, and he did not make eye contact. I know that at this point in his life, Nigel has the ability to communicate ‘better’ than this when he is motivated to. But the way that he communicated at that meeting was exactly how he needed to in order to communicate his needs. To show them that even though he is now ‘high-functioning,’ he has needs that must be met in order for him to function as well as he can.

And this school, which is in the same district as the terrible middle school that did not meet his needs, this school is going to meet his needs. They have already rearranged his schedule so that he can have two study periods a day with his case manager (love her). Not only that, they still allowed him to keep his electives and the same teachers for his academic classes, minimizing how much change he has to assimilate. In addition to this impressive scheduling feat, they have also assigned him full-time aides in all of his academic classes and a student aide in his electives. The really amazing thing is that I didn’t even have to ask for the aides.

It is somehow hard for me to go from not having any of Nigel’s educational needs met and fighting  – to having most of his needs met and not having to fight. I just can’t believe it. I’m stunned. I mean, of course I’m relieved and happy, but I don’t feel secure in it yet, which is sad. After being on the defensive for so long, it’s hard to let it go.

And it’s equally hard to let go of the questioning that goes along with the old family photo albums. The searching for signs, the wondering why, and how. The pain of seeing the birthdays without words. It’s all part of the experience of parenting a child with autism. But after a while, as I leafed through the albums, I noted that many of the pages were tattered, little rips here and there, some smudges. At first I was disappointed, but then I realized that those perceived defects were signs of enjoyment and appreciation. Our photo albums have been looked through a lot, and not just by me. My sons look at the photos and see the smiles, the good times, the birthday presents, the people who love them. They don’t dwell on their development or anyone’s diagnosis. They just enjoy the pictures, and, I hope, their memories.

I need to learn how to do that. And I also need to let go of the defensive parenting and not be skeptical of the long-awaited and hard-won positive educational setting. Oh, blessed school! My son has greater needs than we thought, but those needs are being acknowledged and met, and I don’t have to fight! Halleluiah!

With My Eyes Open

How many times have you heard “They grow so fast”? In my almost fifteen years of being a parent, I’ve heard it a lot. I’m sure most of us have. And all the times I heard it I would smile and nod; I wanted to seem wistful, like other parents. But inside I was thinking that it didn’t seem fast to me.

Looking back, I always wanted to get through my children’s various stages. When they were babies, I couldn’t wait for them to sit up, become mobile. I figured they would be happier when they could do those things. I figured they wouldn’t cry for hours on end. I figured I could get some sleep then. I figured things would be a little easier. Then I couldn’t wait for them to start talking. I figured they wouldn’t get so frustrated. I figured they would stop screaming. Of course, I had to wait many years for that (both the start of the talking and the end of the screaming).

Then there was all of the “extra” stuff. Two sets of IEP meetings, specialist doctor appointments, tests, and therapy sessions. I wanted to get through all of that, too. I was so busy trying to get through everything I perceived as stressful that I developed tunnel vision. And while tunnel vision is great for finishing college or being apart from loved ones for a long time, it’s not the best way to be a parent – whether you believe they grow fast or not.

And now my younger son is 13, in middle school. The older one, almost 15, just started high school. I catch myself thinking “if he can make it through this first year, he’ll be okay,” or “as soon as he’s finished with middle school, things will be easier.” But what about the time in between? Why do I still want to get through it? Some of it is still stressful, yes, but not all of it. And sometimes when I least expect it.

Take, for example, my son’s appointment with his psychiatrist today. I rushed home from work, picked him up, and rushed to the doctor’s office. On the way, I realized that I had forgotten the book I wanted to bring to read in the waiting room. Then I started thinking about what the blazes I would make for dinner, wondering whether the pharmacy would still be open after the appointment, and hoping that the DVDs that were due today were all in the cases that I had tossed on the back seat of the car. We arrived barely on time, signed in, and sat down to fill out the half-page form that must be filled out for all appointments. It requires a few checkmarks and about six written words. I have started having my son do it so that he learns these things. This is the third time I have instructed him to do it, and for the third time, he balks.  “Why do I have to do it?” he demands.  “I don’t like writing,” he growls, and then, when he is almost finished, he fumes, “Just because it says ‘signature’ doesn’t mean it has to be in cursive!” “Why are you being so argumentative?” I ask, trying not to smirk. “I’m not being argumentative!” he retorts. And then I start to laugh. I try to hide it, try to turn it into a cough, but he calls me on it. “You did that because you’re laughing,” he says in a low voice.

After assuring him that I’m not laughing at him, I try to explain the concept of stress release, that sometimes I just start laughing when something’s not really that funny. What I feel like telling him, but can’t, is that I realize I’m also laughing in relief. I look at my beautiful, argumentative son and it hits me. He’s talking now. He’s not screaming. He’s not bolting away or writhing on the floor in sensory overload. All this time that I’d been trying to get through all of that, I never realized that I did get through it. Yes, more issues have come up. Different sources of stress. Just because he started talking and stopped screaming doesn’t mean that all of my stress is gone. But that stress is gone. The stress of dealing with a bolting, screaming, nonverbal child is now gone. We didn’t get here by magic, but still, we finally got here. For years I didn’t know if we could. And I am laughing, wondering why I hadn’t stopped to realize it before.

I need to turn off the tunnel vision, open my eyes, and look around at what’s happening now. I have a few years left with my children before they become adults. And even though at least one of them will still be home with me for an indefinite amount of time, things will not be the same. Even though, to me, they don’t grow fast, they still grow. And I don’t want to miss any of it because I’m too busy trying to get through it. 

Enough

And so, high school begins.

Inspired by my good friend Mama Edge, I prepared an information sheet about Nigel to give to all of his teachers. Why, with all the proactive things I do to ensure my son’s success, had I not thought of this before?! It’s such a basic, fundamental thing to do! Imagine how much better things might have gone in middle school had I thought of this then! *slaps forehead*

Alas, the idea had not graced me with its presence. I muddled through somehow. But I am happy to report that I am now on track, and this afternoon I presented all of Nigel’s teachers with an information sheet listing his background, his strengths and weaknesses, descriptions of his mannerisms and behavior, and tips for helping him to learn and function at his best. The teachers seemed interested and appreciative. Not all were there, but I brought extras to be given later to those who were unable to attend the meeting. The regional autism consultant, who had shadowed Nigel on his first day today, said that he seemed to do pretty well.

But afterward, as I walked through the halls on my way out to my car, the nagging doubt returned. The anxiety. I saw a wall display in one hallway that Nigel and I had walked through last week. The school mascot is the pirate, and the display cabinet held student artwork in it. Across the top of the display, in large letters, was written “Pirate allery.” Nigel laughed and pointed at it, saying in a loud voice, “‘Pirate allery!‘ The G is missing! Ha!” Then he laughed some more. “Yes,” I said, smiling. I continued in a quiet voice, trying to get him to tone down his loudness, “That’s funny.”

And really, it was pretty funny. But in that moment he reminded me of the fact that he has the emotional age of a 9- or 10-year-old. It’s not new to me, but sometimes it just hits me. And I’m mainstreaming him in high school. It’s like sending a 9- or 10-year-old to high school. *sigh* I walked out to my car, drained (this is the third time in a week that I’ve had to leave work early to go to the high school for a meeting), wanting to be hopeful, but so, so worried. So resigned to the reality, the uphill nature of parenting a child with autism, the constant wondering if I am doing enough. I have been at both ends of the spectrum with my son, and both are difficult. Some things were harder then, and some things are harder now. But if it’s hard on me, how must it be for him?

At least the high school support systems are now in place. In addition to the information sheets I gave to the teachers, I submitted a stack of print-outs of my post “Getting to Know an Autistic Teen” for Nigel’s peer advisory group, twenty kids he will be with all year long, some in other grades. The advisory teacher will give them out to the group sometime in the next few days. I said a quick prayer as I crossed the threshold of the school, hoping that this disclosure will lead to acceptance.

I got in my car and started it. Tired, lost in thought, I reminded myself that I needed to stop at the post office. As I pulled away from the curb, the car stereo came on automatically. And there it was – already. A response to my brief subconscious prayer. “Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right.” I sucked in my breath, overcome with emotion. I didn’t remember that I had Bob in there. But that song, those words – right at the moment that I needed them. Such a gift.

Thank you, I said, relief washing over me.

The Long-Distance Family

My boys, my two big teenagers, are home! I drove the long drive to pick them up, hugged them, laughed when they called me “Dad-Mom” for the millionth time, piled their suitcases, computer, pillows, books, movies, Xbox 360, and two bicycles and helmets into my small SUV, and drove back home. Whew. This was their eighth summer in LA.

Last year when they returned, I wrote about my anxiety concerning the long-term effects that this going-back-and-forth arrangement might have on them. I can’t help thinking about that. But then I realized that what we do is far better than the alternative – not spending time with their father. It’s not an easy situation, and we do the best we can with it. But this year I didn’t really dwell on that too much. This year, this pick-up, was all about reminiscing.

I remembered the first time we did the 700-Mile Kid Swap, nearly eight years ago. Nigel was seven and Aidan was five. It was for less than a week that first time, for a winter visit. I remember how we transferred all of their stuff out of my car into their dad’s car, hugged goodbye, and drove off in opposite directions. They got in the southbound lane to LA, and I got in the northbound lane to Oregon. I remember crying on the onramp as I realized that this would be the first of many times that I would drive home without my children. And they were so little.

That first summer, when Aidan turned six and Nigel was not yet eight, they were gone for six weeks, and I went to visit them at the three-week point. I think Nigel thought that I had come to take him back with me, and he cried when I said goodbye after the weekend visit, actually said “All done LA,” at a time when his speech was so limited. Broke. My. Heart. And then when they did come back to Oregon, Aidan had such a hard time transitioning and readjusting that he lashed out at me and told me he didn’t want to live with me anymore. I had thought we might go through that when he was a little older, but not at six. It took him a month to work through it. Broke. My. Heart.

So it’s been hard – on all of us. And though we still miss each other when we’re apart, we’ve come a long way in dealing with our reality. We all have hard parts of our lives – autism, divorce, money or health issues – and we do the best we can with them. That’s all we can do. We have to work with what is. And I think that, over the years, my boys and I have done pretty well with our “what is.” We might feel, as Aidan said at age seven, like we have two lives, but we’ve learned how to blend them seamlessly. We’ve adapted. And we’ve thrived.

It may not be what I would have wished for or expected when I started my family, but that’s okay. It may not be ideal, but we’ve made it work for us, and I’m rather proud of that. We’re, like, pros in the long-distance family department. We have absolutely no transitioning problems now. And I only got called “Dad-Mom” twice!

Pillars of Hope

As some reading this post already know, I recently returned from a trip to Nepal. I was part of a team of therapists and teachers from Knowledge for People, a non-profit organization that helps with autism education and outreach in developing countries. We spent two weeks in this beautiful, diverse country, working with wonderful people. It was simply an incredible experience overall, but nothing could have prepared me for the emotional impact it had on me at the end.

We spent the first few days getting over our jetlag, doing a bit of sightseeing, and acclimating to the culture. Then we worked directly with 28 families in individual sessions (which I described in this previous post). With the help of translators, we taught them the basics of PECS (Picture Exchange Communication System), ABA (Applied Behavior Analysis) therapy, and sensory integration. The parents were so appreciative, and we could see the children benefitting from just the couple of hours they spent with us. Many were nonverbal, and some of them took to PECS right away, which was so exciting to see and experience.

The parents we met and worked with are truly dedicated to their children and doing all they can to help them. Both mothers and fathers are heavily involved, and in many cases, so is the extended family. We worked with grandparents, aunts and uncles, and older siblings. It was so positive to see such dedication in a country that has little information about autism available. They try so hard, and I could see the worry and exhaustion on their faces. But I could also see the love. It was there every minute.

At the end of the week of individual sessions came the two-day presentation workshop. Sixty to seventy people filled the festive, tented area that was set up in the courtyard of the small center called AutismCare Nepal. Chairs were rented, banners were posted, lunch was catered. It was definitely a big event. Many of the parents and extended families we’d worked with attended, but so did teachers, reporters, pediatricians, and other doctors. We were thrilled with the turnout, even given the fact that Kathmandu’s public transportation system was on strike that weekend.

We prepared presentations on the following topics: general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Before the presentations began, we met with our translators to go over the material and see if they had any questions. I sat down with my translator, a doctor whom I’d already met a few days before when we had the individual session with her family – her husband, their three-year-old son, and his grandmother. She looked over the outline of my presentation about my experience with my now-14-year-old son, from the early days of being nonverbal and having agonizing sensory issues to slowly, painstakingly learning to talk and cope with sensory integration. I mentioned the difficulties we had later with mainstreaming, how he was so tortured by bullying. My voice broke as I talked with her, and we cried together as she told me that she has the same fears for her son. I was awed by the depth of feeling I could share with someone living on the other side of the world.

Moments later, we composed ourselves and went out to the presentation area. Fortunately we were not the first to speak that day. But when the time did come, and we stood in front of all the parents, teachers, doctors, and other attendees, we weren’t the only emotional ones. After I introduced myself and talked about my experience with my son, pausing often for translation, I said this to them:

We live far away; our lives, jobs, and cultures are very different. But we have one thing in common – our children. No matter where we live, we understand that part of each other’s lives. In the United States we like to say, ‘It takes a village to raise a child,’ meaning that many people are involved in caring for a child and teaching him or her. When a child has autism, that statement is doubly true. It takes more than a village. That is why we are here, from another country, to talk about our experiences and strategies that have worked for our children. Having a child with autism is a tremendous challenge, the biggest of my life. You have other challenges in your life that I do not understand. But in this challenge – autism – we are connected. You are not alone.”

I talked to them for a while, feeling the bond grow deeper with each word that my equally emotional translator conveyed to them. At the end of the day, those who could speak some English came up to me to thank me personally. I was so moved by their gratitude, and their love.

On one of the nights during the week, we had dinner at the lovely home of the parent-founders of the center. In Kathmandu, it is common to see homes with rebar cable sticking up out of the top, as pictured below. Embedded in the foundation, the cables provide the structure for the pillars of each floor of the home. Often, the owners stop building at two floors, but the rebar cables still stick up from the roof, exposed, in case they are able to build another floor in the future. “We call them pillars of hope,” Hem, the father, said with a smile.

I’d like to think of the work that we did in Nepal as a pillar of hope. “You are not only helping our families, you are helping our country,” Hem also said. We weren’t able to be there long enough to build a new floor, but the hope is definitely there.

About Face

Clenched teeth and narrow eyes? Angry. Tears streaming down face? Sad. Smile? Happy. Open mouth and wide eyes? Scared. Furrowed brow and tight lips? Not sure.

Over the years, Nigel has learned to read the cues of basic emotions and identify them, but he has yet to do the same for emotions that are less easily recognized, such as worry, relief, disinterest, embarrassment, confusion, and disappointment. They talk about these in his social skills class, and we talk about them at home, of course, but it’s hard for him to catch on. And it’s always difficult to apply the situations of Social Skills Class to the real world, although it’s certainly worth trying. Today, however, I stumbled across a more effective method.

It’s Disaster Movie Weekend here at Chez Nigel, during which he watches everything but the 2008 parody/spoof called Disaster Movie, which, he says, is not a real disaster movie. After cleaning his room more thoroughly than ever before, he was rewarded with a full movie weekend while Mom works (mostly) unhindered in her office, appearing only to make dinner (that was the plan, anyway). Nigel began with various Godzilla flicks, moved on to Deep Impact, Core, Volcano, and finished with his favorites, Twister and The Day After Tomorrow.

I’ve never been able to figure out why he enjoys these types of movies so much, but he has for a long time. He first saw Twister at the age of five, and has loved it ever since. He’ll rarely go more than a few weeks without watching it. Then a few years ago came The Day After Tomorrow, and all I can say is at least we now have an alternative to Twister. DAT has everything he loves about disaster movies – imminent destruction and earnest people trying to either stop it from happening or survive it. He doesn’t care about the writing or the acting. He doesn’t care if the movie got bad reviews. He’s just concerned with the main idea and the special effects (although he lets that slide for the old Godzilla movies he holds so dear).

So he’s watching The Day After Tomorrow out in the living room, and I venture out of my office in the early afternoon to facilitate lunch. I come and stand beside the couch, watching a scene near the end in which the father is reunited with his teenage son, for whom he had been searching. I’ve unwillingly watched this scene (and the whole movie) several times before, but something – my frame of mind, the loving energy that filled our home this weekend, something – makes it affect me differently this time. I stand there watching the scene, feeling emotional and trying to fight it. I think that I’m keeping it low-key and don’t think my appearance is that noticeable.

Nigel looks at me and says, “Your face. It’s making some sort of expression.”

And then I about lose it. My breath catches in my throat, and I have to turn away as tears pool in my eyes. He noticed! He didn’t know what the expression was for, but he noticed a subtle facial cue! I dab my eyes and compose myself, then turn back to my son.

“Yes, Nigel, it’s an expression of emotion. I was just feeling how the father felt in the movie when he found his son and hugged him. He was happy, but all the anxiety that he felt while looking for him just built up in that moment and made him emotional. Does that make sense to you?”

“I think so.”

I tell him how great it is that he’s starting to notice the subtle expressions of emotion that people show, not just the more obvious ones of anger, sadness, happiness, or fear. Like talking, like writing, like learning to be polite, this is probably something that will take him a long time to develop. But the fledgling ability is there, and I am pleasantly surprised.

I am equally surprised that I got choked up over The Day After Tomorrow. Next thing you know, I’ll be crying at life insurance commercials. I may have a harder time explaining that!

Autism and Fears

For several of Nigel’s early years, both before and after his autism diagnosis, his dad and I thought that he was afraid of the vacuum cleaner. It wasn’t until we learned about sensory issues – and noticed that Nigel had the same “fear” of leaf blowers, blenders, food processors, and air hand driers in public restrooms – that we began to realize that he didn’t fear these objects. He could not filter the loud, invasive sounds they made. The sounds were so painful to him that he learned to run to a different room if he saw the things that produced them. And when he couldn’t run to a different room, he would scream. He wouldn’t even cover his ears because he didn’t know how. It actually took him a couple of years to learn that he could do that when he heard a loud sound.

As the years went by, covering his ears became second nature to him. And slowly he learned how to filter the sounds that were previously so agonizing for him. But as his sensory issues became more manageable, he developed real fears to take their place. I’ve mentioned before that he is afraid of bees and other flying insects, and a close second, also in the flying category, are bats. Yes, my son, the zombie movie aficionado, is afraid of bats. And this, in addition to Aidan’s mild claustrophobia, has prevented us for years from going as a family to nearby Oregon Caves National Monument, which I enjoyed as a child. But I am nothing if not determined. Every year for the past five years I’ve tried to chip away a little at the bat fear. One year I bought Stellaluna. Last year for homeschooling we studied bats on Wikipedia, something that Nigel likes to refer to. This year I found my old Oregon Caves pamphlet which distinctly says that the bat population “peaks in the fall when bats swarm to breed,” and told him that both times I had been to Oregon Caves, I had not seen a single bat. So this year, in the spring, he was finally ready. And Aidan decided that since Nigel was going to stare down a fear, he was game to do the same.

We arrived early so that we wouldn’t have to wait long for our tour, and started off with our Ranger tour guide and a group of fifteen other people. We spent over an hour inside the cave of amazing calcite formations, and both boys did really well. At one point, Nigel got a little nervous because the Ranger mentioned that there might be a bat in one of the rooms up ahead, and Nigel growled at another visitor to shut off his camera so that the flash would not upset the bat, causing it to fly into his face. But Nigel quickly regained his composure and proceeded into the room, and I was so proud of him that he went ahead in spite of his fear. Much to our relief, there were no visible bats, and Aidan was fine until the very end, when the cave started to get to him. But he stayed calm, and they both completed the tour. Yes, you read that correctly – they both completed the tour! No panic attacks! No screaming, yelling, or bolting! No whining even! I guess it was like teaching Nigel to cover his ears when he was little – it just took a few years of teaching and preparation. When he was ready, he was fine.

As a treat, I took them to get burgers for dinner at a restaurant. Right after our food arrived and we started digging in, the opening lyrics of a Queen song began. Nigel stopped and listened. “Hey – what’s this song?” he asked.

“‘Bohemian Rhapsody,'” Aidan answered.

“No,” Nigel said, still listening. Then he remembered. “It’s ‘We Are the Champions.'”

“Oh, yeah,” Aidan agreed. (I just discovered while writing this post that last week this song was performed on the season finale of American Idol. The boys and I do not watch this show, so they were trying to remember from hearing one of my old CDs years ago.)

Then Nigel looked at me, making full eye contact. “This is the perfect song for us to hear tonight. You know – because we are the champions of the cave.”

I just gazed into his gorgeous medium brown eyes that I seldom see directly and tried to choke down my burger. “Yes,” I said. “You guys are the champions of that cave.”

Then Nigel quietly sang, “We are the champions . . . of the cave.” And my heart swelled with pride.

 “Paradise Lost” – the room where the bat was supposed to be.

Nigel and a new friend!

End of the tour – jacket and hood completely off!

The Hood

When Nigel was very little, about two years old, he had a cute little fleece jacket with a “varsity” number on it. It also had a hood on it, and we noticed that he preferred to have the hood up whenever we left the house. When I learned that he had autism and that most of his meltdowns were sensory-related, I came to realize that the hood on his jacket helped to muffle many sounds that he was unable to filter. So as he got bigger, I bought him new fleece jackets with snug-fitting hoods. The one in the photo above is probably his third such jacket, and he was five years old.

He continued to wear his hooded jacket – always with the hood up – when he was in elementary school. The teachers allowed him to, although they encouraged him to remove it while he was in class. It didn’t really matter to me that he had the hood up inside; if it helped to muffle sounds that bothered him, then I felt he should be allowed to have it up. What I didn’t realize was that the elementary teachers were trying to prepare him for middle school.

At Nigel’s middle school, it is against school policy for any student to have their hood up or wear a hat on school grounds. And the noisy halls of that school is where a sound-muffler would be most needed. Whenever I go to pick him up from school, I sit in the foyer near the office to wait for him, and as soon as the bell rings and students begin pouring into the halls, the din is at such an intense level that I have no idea how Nigel manages it. I have suggested to him that he wear ear plugs or headphones in the halls, but he nixes that idea with his “I want to be like everybody else” refrain.

So he abides by the school rule and, every morning when I drop him off, as soon as he steps onto the school grounds, he sheds his hood and bravely walks into the building. I always like to look in my rear view mirror as I drive away, checking to see if anyone follows him to bother him. I used to see kids walk behind him and mimic him or flick him in the back of his neck to get a reaction out of him. He tells me that no one bothers him anymore, but I’m never sure because he has withheld information before because he doesn’t want me to worry. So I watch.

One day last week, I dropped him off and he got out of the car with his hood up, because he likes to wear it when we leave the house in the morning. As usual, he walked toward the entrance, and as soon as he was officially on school grounds, he slipped off his hood and continued on into the building. As I pulled away, I noticed three boys standing off to the side, watching him. They pointed at him and laughed. And then, as I slowly drove by them, one of them actually had the gall to look at my face while he was still laughing. He saw which car Nigel got out of, day after day. He knew damn well who he was looking at. And so, with adrenaline pumping through my veins and a lump stuck in my throat, I glared at him. I glared at that boy who dared to laugh at someone just because he wears a hood every morning, just because he does things a little differently.

And I drove to work with sobs catching in my throat because I realized that no matter what I do, no matter how many Circles of Friends I try to start, no matter how much I write about autism, no matter how much advocacy I do, there will always be people who will laugh at my son and his different ways. This is one of the things I grieve for – knowing that ignorant people won’t give my son the respect and dignity he deserves; they’ll laugh, or worse – harass him. And it burns me. I can be Zen-like about receiving the wrong school book, but not this. This is hurtful. And there is nothing I can do about it, nothing more than what I already do.    

This is one of the hard things about being the parent of a special needs child. No one wants their child, typical or not, to be laughed at. But we parents of special needs children deal with it on a regular basis. We do all we can to stop it, but it still happens. And we know it will continue to. I guess we just need to have the strength to do all we can – and the grace to realize that that’s all we can do. I don’t know. I’m not there yet. It still makes me angry and sad. And I think it always will.