Category Archives: Social Issues

Watching Adam

Ever since the movie Adam came out on DVD, I’ve debated watching it. I was curious but skeptical. I wondered how realistic it could be, or how stereotypical, how formulaic, or how Hollywoodized. I feared that it might be contrived, either an Apergerized, Rainman-esque “autistic-people-are-savants” portrayal, or a glossy “people-with-Asperger’s-are-quirky-but-they’re-just-like-everyone-else” feel-good portrayal. And, having watched it last night, I must say that there were a few implausible things I noted, but I could have been wrong about them. After all, Neil does not have Asperger’s. Some areas of his development have differed from the characteristics of AS. But these days, there are plenty of similarities.

In any case, this is not a review of Adam. This is a post about what happened when I decided to watch it. With Neil. Yes, I took a leap. I’ve been taking a lot of them lately, trusting that I’m doing the right thing. When I rented it, it was with the intention of watching it alone, but given Neil’s interest in relationships, I thought it might be good for him to see the film, and then we could discuss it and how it relates to him.

And discuss it we did. My son said so many profound things that I was constantly choking on my emotional reactions, trying not to let him see how his words affected me. With the movie, he took it all in. At times, such as when the two main characters were in bed together, he would avert his eyes, and I told him that it was a PG-13 movie, and I didn’t think we needed to be concerned about things going too far on film. Neil said, “It’s not that. I’m just afraid that he’s going to do or say the wrong thing and mess it up.” And I died inside, thinking of all the times in my son’s everyday life that he must feel that way about himself.

Neil noticed what difficulty Adam had in a restaurant, and that prompted a discussion about Neil’s own sensory issues. He remembered how hard it was for him to go into public restrooms because of the air hand driers. “They were like screaming banshees,” he said. And I pointed out that he learned how to filter that sound. “Yeah. They’re still loud, but I can handle them. It seems like Adam couldn’t handle the sounds in the restaurant,” Neil said, and I could hear some self-confidence (or was it relief?) in his voice that he had progressed to a point where he could handle being in a restaurant. And, Neil was quick to point out, he’s an extrovert who wants to do social things, whereas Adam is definitely an introvert and experiences much anxiety about doing those things. Neil may share the lack of social skills, but at least he is motivated to be social, and this made him feel good about himself. He also commented on a scene in which Adam becomes angry and does not deal with it well, raising his voice and throwing things. Neil said that sometimes anger feels like “a nuclear bomb going off” and “it’s so hard to control it.” But he also realized that he is learning to control it, and that, at fifteen, he is doing a better job of it than Adam.

A couple of areas really seemed to hit home with Neil. One was the focused talking about “specialist subjects.” For Adam, it was telescope facts and local theater history. For Neil, it’s a range of all his favorite movies, military history, and his favorite authors (Jules Verne and H.G. Wells). In this area, he is much like Adam—not realizing when he’s going on too long or noticing that he’s monologuing and the person is bored. Neil believes that he’s got this area under control because, in his social skills class, he’s learned to ask the person if he should continue talking about something. “And if they say ‘yes,’ I do.” But he doesn’t have the awareness to realize when he’s been talking too long and the other person is just being polite.

Also, Neil totally identified with the big picture social issues. “Normal people usually don’t get different people,” he’d say. Of course, many times I’ve said to him that different people are normal too, but that doesn’t seem to make sense to him. However, toward the end of the movie, he did say, “Eventually, people learn to understand people like . . . us.” I wasn’t sure if he hesitated because he was trying to remember Adam’s name, or if he was processing the fact that he identified with him. It’s been very hard for him in the past, although recently he’s felt better about it.

Overall, I’m glad I watched Adam with Neil. It’s true that seeing some of the behavior on film was hard for him, but I think that makes him more aware of it. If he knows what the challenges are, he can face them armed with that knowledge. In addition to that, seeing this movie prompted a discussion about the importance of jobs, and that if you get tired of doing your job after just two hours, you can’t say, “I’m done” and then leave. “I have to stay at the job so that I get the paycheck and can support myself,” Neil said. Halle-freakin-luiah! This understanding is a long time in coming. A long time. For years, he’d say that when he grew up he wanted to be an inventor of time machines and didn’t want to do any other job because it would bore him. I would suggest to him that he might need to do another job while he was inventing the time machine so that he would have money to pay for his food, etc., and this concept was completely lost on him. I don’t know what it was about watching Adam that changed his thinking, but it did, and I’m very glad. I think both of us are a little more optimistic about his future now. And that’s saying a lot about a movie I wasn’t sure I wanted to see in the first place.

When It Hurts

Sometimes, when you’re the parent of an autistic teenager, you have to write letters like this:

Dear [Regional Autism Consultant] and [Neil’s speech therapist],

I hope this finds you both well. Neil continues to benefit from your social skills class, and I want to thank you both for doing it. I wanted to run something by you that I think would be an important addition to the regular social skills teaching. Today I had a meeting with [his case manager], and she mentioned that a student told her about a situation in which Neil was being taken advantage of and laughed at. During lunch, a group of students were encouraging Neil to tickle random people, and they would laugh when he did it. As you might remember, Neil has been targeted in this manner before, and it always pains me to hear of it.

I would be so grateful if you would work something into the social skills curriculum to help him learn to recognize these sorts of situations when people have fun at his expense by telling him to do something inappropriate. He doesn’t realize that it’s inappropriate or that he could get in trouble for touching other people. He thinks he is making friends this way, but the “friends” are laughing at someone with a developmental disability. They know that Neil lacks social awareness, and that’s why they target him. They are not innocent little kids anymore. And yes, Neil has been told before that real friends will not get him to do things that he shouldn’t do, and then laugh about it. But he needs constant reminders from people other than his mother. He needs to be taught how to recognize these sorts of situations. If a random student notices and takes the time to tell a staff member about it, then it’s pretty significant. And I’m sure it’s not the first time, even though it was the first time that was brought to our attention (that I know of).

So I think it would be helpful for Neil to have some reminders about what’s inappropriate at school, and that if someone tries to get him to do something and they are laughing about it, they probably don’t have his best interests at heart, and they should be avoided. I tell him these things, of course, but I think if he hears it from other adults (or peers who care) and is taught how to recognize those situations (perhaps through roll-play), then he might start to understand.

Thank you so much for your time and the work you do with my son.

Best regards,

Tanya Savko

And it breaks your heart, again and again. You believed that things were going well socially at the high school, that the other kids had matured since middle school, that these things weren’t happening any more. You hoped that no one would be insincere with him at his first dance, and you wonder if they were and your son just doesn’t have the social awareness to realize it.

Sometimes, as the parent of an autistic teenage, it really hurts. You’ve been advocating for over twelve years since the diagnosis, and you still have to do it. You still have to manage your pain and quell your anger. You have to keep moving, keep doing, keep hoping.

And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you.

The High School Dance

So I took a big chance at the high school dance . . . – Aerosmith

I remember what I wore to my first high school dance as a freshman: a pleated linen skirt, a black shaker-knit sweater (remember those?), and black high heels. I loved that outfit. I loved being at school at night, how different everything looked, how different I felt. A little nervous, but excited.

For the past two weeks, Neil has talked of his desire to attend his school’s winter formal. I’d pick him up from school, and he’d tell me about what they discussed in his social skills class, specifically how to ask a girl to a dance. I remembered the formal dances at my high school and voiced the concern to Neil that freshmen might not be allowed to attend. I mentioned that we might need to get him a tie. I posed the idea that they might be required to have dates at formal dances. Neil decided to find out.

Apparently, times have changed. Freshmen can attend, they don’t need to wear a tie, and they’re not required to have a date. So why, then, is it called a formal? Regardless, Neil was determined to go, and my nerves kicked into overdrive. What if the girls were insincere? What if they asked him to dance only to laugh at him? What if the guys tried to get him to do something that could get him in trouble? What if they talked him into going out to the parking lot or leaving? What if the music was too loud for him, or he got into a situation that he couldn’t handle? The worry was driving me insane, but I had to let him do this.

The night of the dance, Neil watched movies in his room until it was time to get ready. Then he took a shower, brushed his teeth, and put on a ticking-striped button-up shirt, khakis, and a pair of old-school blue Vans with laces. “Because they’re stylish,” he told me. He came out to the living room and said that he was a little nervous, so he had watched some Winnie-the-Pooh movies to help calm himself. My heart felt like it was caught between my ribs – Winnie-the-Pooh at age 15. My sweet, innocent boy. And he’s flying solo – no aide – at a high school dance. Last year, he attended a middle school dance/event successfully without an aide, but there were other activities, such as an obstacle course and video games, that he could participate in. This would be a whole different ballgame.

I motioned for him to sit next to me on the couch, and he did. I told him that if the music was too loud for him, or if he felt uncomfortable for any reason, he could call me on his cell phone to come pick him up. It didn’t matter if he had only been there ten minutes. I told him that if anyone was being insincere while dancing with him, he could just say, “No thanks” and walk away. I told him that if anyone tried to get him to do anything or leave the dance that he could just say, “No thanks, I’ll just hang out here.” At this stage of his development, our social stories are usually verbal. I rarely have to write it down for him. As liberating for me as this is, it still does not alleviate my worry. I know how vulnerable he is.

He said that he understood everything I had told him and said that he thought he’d be okay. A larger part of me actually agreed. Then he said, “But I think it’s too dark to ride my bike.”

“Oh, honey! Of course I’m going to drive you!” Poor boy thought he would have to ride his bike to the dance!

I dropped him off, came home, and watched a movie with Adam, thankful for the opportunity to have some one-on-one time with him. Neil didn’t call, and I hoped all was well. I told him that I would pick him up ten minutes early to avoid the congestion, and when the time came, he was right there waiting, by himself, doing some sort of spinning dance. He got in the car, and before he had even closed the door, he announced, “Well, I danced with a lot of girls!”

He assured me that they were nice, they were sincere, and that he felt comfortable and had fun. I told him how glad I was to hear that. On the surface, I felt what I always feel after he does something successfully on his own – relief and gratitude. But there’s something else there, in my heart, some emotion that I cannot identify, even though I feel it every day of my life, and it makes me want to cry when I’m happy. Maybe it’s just love.

“This will be a fun high school memory for me,” Neil said as we got home and walked in the front door. I hugged him and felt that love surge through me again, immense and consuming.

A Little Boy’s Dream, Part 2

When Neil started wrestling two months ago at his high school, I was elated and optimistic. This, as I wrote previously, was something that he’d wanted for a very long time, and he made it happen. Surely that meant that this was the beginning of great things in his life, that this would be his niche, that by junior or senior year I’d be attending state championships and even nationals with him, filming him as he won matches, cheering, crying with joy that he achieved success on his own terms.  I could see it happening. I could almost feel it. I wanted it for my son. But I knew that his first season would be a time of learning, since he hadn’t wrestled before, and I had talked with him about not feeling bad if he lost a lot of matches his first season. I told him that I had heard from other parents that their sons lost a lot of matches their first season, but they just kept practicing, and by their second season, they were winning matches.

The season is now two-thirds of the way over, and he has not lost any matches. But that’s because he hasn’t been in any matches. He hasn’t been in any tournaments. The only time he gets to actually wrestle is during practice. At least, that’s what I thought.

I picked him up from practice last week, as I usually do. He got in the car, I asked him how his day had been, and he said, “Fine,” as he usually does. I pulled out of the parking lot and began driving home. And then he said something that made me want to sob.

“I think there must be an odd number of people on the team, because whenever it’s time to pair up for practice, I always end up without a partner.”

He had said it with trust and diplomacy, without blame, and without self-pity. But I could hear his underlying disappointment. I could hear the frustration he’d learned to suppress from years – a lifetime – of being left out. Of not being understood. Not being accepted.

A few weeks ago, it was proposed by his case manager and the coach that we reduce his time at daily practice because he was complaining of being too tired to do his school work, and I had agreed. But I didn’t know that he was being excluded during practice, and I wondered how long it had been going on. I took a deep breath.

“Have you talked to the coach about it?” I asked. As much as I want to jump in and be mama bear, I am trying to hold back and give him the support to advocate for himself.

“Yes. But I don’t remember what he said.”

“Well, maybe you could talk to him about it again, and suggest to him that if there is an odd-numbered amount of people, that perhaps a few could rotate. Since you leave early, you could work with someone first, and then when you leave, the other person would get their turn.”

“Hey, that’s a good idea,” he said with interest. “I think that would work.”

 *

Five days later, I ask Neil if he’d talked to the coach again, and if he’d been getting a partner at practice.

“Yes, for a little while,” he says. “But I’m starting to think that this being thrown around all the time is too hard on my body. Wrestling’s not how I thought it would be.”

This is new information, and part of me suspects that he’s trying to talk himself out of wrestling because he hasn’t been in any matches or tournaments. I remind him that the first season is a learning season for everyone, and ask him if he would like me to talk to the coach about making sure that he gets to do at least one match before the season is over. He declines my offer. I remind him that he’d been wanting to do this since he was a little kid.

“Yeah,” he says. “And I did it. I wanted to be on the high school wrestling team, and I am. That’s all I really wanted to do, besides inventing a time machine and being the first human on Mars.”

And it hits me – he just wanted to be on the team. That was his dream. Not finding his niche, or going to state championships or nationals – those were my dreams. And as long as he’s happy that he followed his dream, that’s all I really care about. I put my arm around him and tell him how proud I am of him. I ask him if he’d like to continue practicing the remaining four weeks of the season.

“No. I just don’t think wrestling’s my sport. It’s too painful. But I’m glad I tried it, despite the fact that it wasn’t what I thought it would be.”

I tell him that I’m glad that he tried it too, and then we go over what he should say when he calls the coach to tell him that he’s not going to do wrestling anymore. I remind Neil that he should tell the coach thank you for the opportunity to be on the team, and that it meant a lot to him.

It meant a lot to me, too.

The Little Things

Umbrellas for guests’ use in the lobby of the Hotel Country Villa, Nagarkot, Nepal, during monsoon season

Sometimes the little things* mean so much.

Yesterday, we participated in a day-long Scouting event that Neil’s troop organizes annually – Christmas tree recycling. The Scouts and their parents drive all over our town and the neighboring town, pick up Christmas trees from people’s homes, load them onto trucks and trailers, and take them to a local park where later they are turned into fish habitat and mulch. It’s a great program for the community, and the donations received from it help to fund the Scout Troop’s activities for the year.

Halfway through the day, we break for lunch, which is prepared and served by Scout parents and siblings at the local church where we have our weekly meetings. During lunch, one of the Scout’s sisters walked around the tables refilling drinks for people. Neil was seated at a table near me, and as she passed by, he held up his cup for her to refill. She did, and he said, “Thank you.” He said it perfectly, so naturally, like he’s been saying it all along. And he said it completely unprompted.

My heart raced, and I wanted to stand up and shout, “Did you hear what he just said?! On his own?!” For years, after he finally started talking, I have always had to prompt him to thank someone, whether it’s for a gift, a server bringing him something in a restaurant, me buying something that he wanted, or for anyone helping him in some way. I have repeatedly told him that whenever someone does something for him, even if it’s just holding a door open for him, he should say thank you. And, until yesterday, I had never heard him say it unprompted. The way autism affects him socially, it just doesn’t occur to him to thank people. I think that now, at this age, he understands why he should and that it’s expected, but he usually just doesn’t think of it at the time. He may be battling sensory issues in whatever environment he’s in, or preoccupied in some way that we don’t understand. It’s not because he’s rude and doesn’t have manners. And I know that he does the best that he can, and his family and friends know it too. We don’t hold it against him when he doesn’t thank us.

But the general public doesn’t know or understand, and that is why I have continued to drill into him to say thank you. And that’s also why I write and advocate about autism – so that the general public might start to know and understand, and he can meet them halfway. He won’t always say thank you when he should. He can’t always say thank you. But he tries. And when he does, it’s beautiful to hear. It’s a little thing, but it means so much.

*For more not-so-little things, check out my friend Jess‘s Community Brag Page! It’s a great space for any parent of a child (any age) with ASD, whether you are a blogger or not, to contribute to an ongoing celebration of our kids’ amazing progress. Cheers!

Every Morning

Saying goodbye doesn’t mean anything. It’s the time we spent together that matters, not how we left it.          -Trey Parker and Matt Stone, South Park, Tweek Vs. Craig, 1999

I have pulled up in front of the high school and am dropping Neil off in the morning as I have done since he started wrestling two months ago.

“Bye, honey – I love you; hope you have a good day!”

He picks up his backpack and bag of wrestling gear, opens the door and climbs out, shuts the door, and walks into the school without a word, without a glance. This happens every day. And this morning it struck me that even though my son has changed so much in the past ten years, this one thing is still the same. When it’s time to go to school, he doesn’t say goodbye.

When he was five (and for two years before and after), every morning I would walk outside with him when the SPED bus pulled up to the house. I would follow him up the steps of the little bus, greet the driver, and buckle Neil in his seat. I would kiss his head, tell him I’d see him when he got home, bid the bus driver a good day, and step off the bus. Then I would stand in the front yard, smile, and wave goodbye to my son as the bus pulled away. And every day, Neil would stare straight ahead. He would not smile; he would not wave. This went on for five years.

As time passed, he learned to say goodbye in certain situations. For the past two years, I have been able to leave him home alone for short periods of time, and he will respond, “Bye, Mom” when I say goodbye to him. When someone has been visiting our home, he will say “Bye” upon their departure, with prompting. It is never initiated.

As a parent, I’ve learned to just accept it. I’m sure that they continue to work on it in his social skills class. But the fact is that his hard-won ability to talk does not guarantee the ability or the desire to say what society expects. This is one of the many facets of autism. In his mind, perhaps, it is unnecessary to say a parting word upon leaving someone’s presence, especially when it happens the same way every single morning. Or, perhaps, as he gathers his things, steps out of the car, and readies himself to enter a loud, bustling building and function in an unpredictable environment, he doesn’t have the reserves to say anything, to acknowledge me, to be polite. He is too focused on preparing to begin his day at a place that he would rather not be. Even when he is not being bullied, his sensory filters are in overdrive, and his stress level is high. He has to regulate his behavior with both peers and teachers for almost nine hours. And that ain’t easy. I don’t have the heart to tell him yet again that it would be “polite” to say goodbye to the person who drops him off.

And so, tomorrow morning, I will pull up to the front curb of the high school and tell my son that I’ll see him when I pick him up after wrestling practice. I’ll say goodbye and tell him that I love him. And he will pick up his things, get out of the car, shut the door, and continue on into the school without responding. And I will drive off to work and be thankful that, at this point, he does as well as he does. As much as I would love to hear him say goodbye, I don’t need to. I’ll just look forward to the smile he gives me when I pick him up from wrestling practice. That’s worth a million forced goodbyes.

A Little Boy’s Dream

What kind of shoes are these and what’s the seven-year story behind them?

*

Picture a little boy, four years old, with wavy, light brown hair and captivating hazel eyes, who cannot talk. He tries to play with other children by bumping into them and laughing. He doesn’t know how to play, but he tries. He sees children laughing and playing together as a group, so in his mind, he thinks they are bumping into each other, and he believes that this is the way to play. The other children don’t understand. They think that he is being mean, that he is pushing them and laughing at them. All he wants is to join in. And he craves physical contact to meet his proprioceptive needs.

Picture the same little boy, now in second grade. He is talking, although he still exhibits echolalia and mixes up pronouns and word order. This, along with his sensory issues and behavioral challenges, makes it rather difficult to have friends, but he still tries, usually by initiating physical contact. One day, while on a class field trip (accompanied by his one-on-one aide) to the local high school, he visits the Wrestling Room. He is entranced. Though not able to verbalize it yet, he consciously vows that he will attend this high school and be on the wrestling team.

Now picture that same boy at age fifteen. His darker brown hair has developed more pronounced curls, and his eyes are still as captivating. He has learned, through social skills classes and personal experience, that physical contact is best reserved for roughhousing with friends that he’s known for a long time. Then the day comes, two months into his freshman year, when he signs up for the wrestling team. He comes home from school and tells his mother, using perfect sentence structure, that he needs to get a physical done as soon as possible so that he will be allowed to “get on the mats” at practice. He reminds her of how he’s waited seven years to be on the high school wrestling team, and she tells him that she remembers. She remembers that day so long ago when she picked him up from school and his aide told her about the field trip and how much he loved the Wrestling Room. She remembers the various elementary school Christmas Programs that were held at the high school over the years and how, even though her son couldn’t be in the program because of his sensory issues, they would walk by the Wrestling Room and he would tell her “That’s what I am going to do when I go to this high school.” And his mother, not sure if he could ever comprehend the rules of a sport and actually be on a team, but wanting to be supportive, would say in a positive tone, “We’ll see!”

They get the physical done, they buy the wrestling shoes, and the son starts diligently attending practice every day after school. They go to the Parent Night, and the mother approaches the coach at the end of the meeting to introduce herself. She is already impressed by the fact that, during the meeting, when her son asked a question that was a bit self-explanatory, the coach had answered him with genuine respect and patience. So she goes up later and shakes his hand and asks if he is familiar with her son’s IEP for his autism. And the coach assures her that, yes, he has spoken with her son’s case manager and is aware of his challenges. Then he tells her with such sincerity how well her son is doing. And the mother fights a lump in her throat as she tells the coach, “He’s been wanting to do this for a long time,” and thanks him, very much.

Now picture the little boy’s mother picking him up from wrestling practice the next evening. She pulls into the parking lot and sees his lean frame striding toward the car, wrestling shoes in hand. It strikes her that her son is on a sports team for the first time ever. And now she is picking him up from practice, just like all the other parents do with their sons. She sees a huge smile on her son’s face as he nears the car. The lump returns and her eyes sparkle with tears. He has followed his dream and achieved his goal. He is on the high school wrestling team, and he loves it.

He gets in the car and excitedly tells his mother about the techniques he is learning and how he’s already pinned two people at practice! The mother, hoping that the darkness is hiding her watery eyes, tells him how proud she is of him. She asks him if wrestling is everything he thought it would be. “Well,” he says, “I didn’t know we would have to learn tactics. But I like learning by doing.” She asks him what his favorite part is about wrestling. “That I get to meet new friends. And they understand me.” The mother, hoping that her voice isn’t shaking too much, tells him how great that is. And how glad she is to hear it. All those years ago, he knew exactly what he needed.

A Good Soldier

Seven years ago, Neil started a tradition at age eight that we still observe today. Every Veterans Day, when I get home from work (because I don’t work for the postal service), we go to our local cemetery “to pay our respects,” Neil says. He didn’t say that the first few years we went (because he couldn’t), but I’m sure the sentiment was always there. It was his idea, after all.

From a young age, Neil has been interested in military history. He has books on at least eight major wars, does research online, and watches the History Channel. It’s become somewhat of an obsession. But even before he got his books and computer, he had a deep, abiding respect for soldiers. He knows that his father was in the Army, as well as his grandfather. Two of his great-grandfathers were Marines who served in World War II. And he had two great-great-grandfathers who fought in World War I. But long before he knew any of this, he came to me on Veterans Day and asked if we could go to the cemetery.

I remember that day, sunny, but cool. I marveled at his request – “Can we go to the cemetery?” – worded so well at a time when he still had great difficulty with sentence structure and correct pronoun usage. Ordinarily, he might have asked, “You go to the cemetery?” because he constantly said “you” when he meant “I.” But this was clearly to be a joint venture.

“Sure,” I told him, wondering what he had in mind. “Go get your jacket on.” And he ran off to do so.

Our little town is one of the older towns in southern Oregon, and our cemetery has tombstones from the 1800s in it. As we strolled through the entrance gate, I glanced up at the sunlight filtering through the trees, took a deep breath, and began leisurely browsing the grave sites. Neil’s gait, however, was more purposeful. He strode down the main walkway and made a beeline for the military marker closer to the rear of the cemetery. I quickened my pace to keep up.

As we neared the stone and metal memorial marker, I noticed two men seated on a bench next to it. I hoped that Neil wouldn’t start climbing on the five-foot-high marker. In those days, I had no idea what to expect from him. But I needn’t have worried.

He stood in front of it and saluted.

My breath caught in my throat, but I had to quickly regain my composure because one of the men had asked Neil a question, something about having family in the military. And Neil, characteristically of that time period, was not responding. I walked over and briefly laid out the family history.

“I was in Vietnam,” the man said.

Neil immediately turned to him. He made eye contact with a complete stranger, and then Neil began to slowly unzip his own jacket. Again, I wondered what to expect. I stood at the ready, not sure if I’d be translating or intervening or explaining. I’ve had to do so much of that over the years, in so many situations.

Neil unzipped his jacket down to his abdomen, and then slowly, deliberately, using both hands he pulled his jacket to the sides of his chest, a la Superman, to reveal his shirt. It was green camouflage. When I had sent him to get his jacket before leaving the house, unbeknownst to me, he had changed shirts. And he reverently showed it to the veteran in his presence.

“Ohh!” the man exclaimed, chuckling. “You wanna be a soldier too?”

Neil nodded.

“Well, I bet you’ll be a good one.”

I thanked the man and bid him a good day, and Neil and I began to walk home through the filtered sunlight, fallen leaves crunching beneath our feet. I put my arm around him and told him that I was proud of him for being so respectful. And I knew, without a doubt, that whether he ever enters the military or not, Neil would always be a good soldier.

A Drop in the Bucket

Remember that post I wrote shortly before school started – the one about the three girls I had talked to one afternoon? No? That’s okay. Go ahead and read it here. We have time. And then read this…

Over the past twelve years, I’ve talked to a great number of people about autism. I’ve talked to relatives, friends, neighbors, teachers, and complete strangers. I’ve talked to parents at playgrounds, ice cream store employees, grocery checkers, and kids at bus stops. I’ve even gone to a different country to talk about autism. And regardless of where or how or to whom, I always wonder if I’ve said too much, if I haven’t said enough, or if what I’ve said made any difference.

Sometimes it does when I least expect it.

About six weeks ago, my son started high school with a self-imposed vow to ride his bike to and from school every day. He had been practicing around the neighborhood for a few years, and I believed he was ready to do it, even though the idea made my heart race. The day before school started, we did a dry run with him riding his bike to school and me following in my car, about a hundred yards behind. In a previous post, I described how I saw him ride past three teenage girls, and how I saw the girls mimic him with exaggerated gestures, laughing. I quelled my anger and made a split-second decision to pull up to them, roll down the window, and politely, diplomatically let them know that my son has autism. The girls seemed receptive, albeit embarrassed. I didn’t really say much, and I wasn’t sure what good it would do. In fact, I just thought, Three people – a drop in the bucket. But I also realized that getting those three people on our side might make even a slight difference.

Weeks pass. Things are mostly okay at school and the bike-riding is going well, to my ultimate relief. I come home from work on a hectic Wednesday and rush around to get a few things done before my two boys get home from school. Minutes later, my younger son waltzes through the front door, his bus on time. He hurries to remove his confining shoes and greets me. He goes to the kitchen to get a snack. I look at the shed in the backyard to see if my firstborn is putting his bike away yet, since the boys usually get home within minutes of each other. Not yet. I sit on the couch and pretend to nonchalantly read a magazine. Fifteen minutes pass, and my anxiety continues to rise. I get up and decide to go look for him. I jump as the phone rings, pounce on it. Thank God, thank God, it is my son. He has remembered to use the new pre-paid cell phone that is in his backpack. He tells me in his flat voice that there is a problem with his bike. “Did a car hit you?” I gasp.

“No. The rear tube and tire are falling off. Could you come and pick me up?”

Oh, wonderful words. Beautiful sentence structure. Impressive problem-solving. Blessed safety!

“Yes, yes, of course. Where are you?”

“In front of the elementary school.”

“Okay, I’m getting in the car right now. I’ll be there in just a few minutes.”

A block from the elementary school, I see him, walking his bike while holding the handle bars. And then I realize that there is a girl walking beside him. I do not know her name, but I instantly recognize her. She is one of the three girls. Yes. I almost don’t believe it. Awareness in action.

I turn up the block before them and park the car. I get out, wanting to thank her for walking with my son, but as soon as she sees my car, she immediately gets on her cell phone and crosses the street. I get the awkward vibe – she wants to help, but she is still a little embarrassed by her previous behavior. I don’t want to make her feel uncomfortable, so I let it go. I thank her in my mind, send her the appreciation vibe.

I open up the back of my small SUV, and my son walks over with his bike. I praise him for remembering to call me, and together we remove one of the bike’s wheels so that we can fit it in the car. Afterward, we get in and I ask him if the girl had been walking with him long. “Not too long,” he says. “But she was nice.”

Oh, yes. When you least expect it. Even drops in the bucket make a difference.

Uphill

In addition to meeting with Neil’s new case manager last week and doing a walk-through at the high school, we had another reason for going there. Neil needed to do a dry run of riding his bike to school.

Yes, despite past reactions to insects flying in his face, he wants to do this. And I need to let him. He has a fiercely independent spirit, which I think has served him well and will continue to. We have gone over safety concerns ad nauseam, and I think he’s ready. I have to trust that he can do this.

So, that afternoon on the way to the high school, he rode his bike and I waited a few minutes before following in the car. It’s only a mile to the school, but there are several stop signs and intersections along the way, and his job was to time himself so we would know what time he needs to leave the house in the mornings. I told him to ride at a normal pace, to stop at all the stop signs, and not try to hurry up if I passed him.

I pulled out of our driveway and drove to the first intersection and turned. There, about a hundred yards ahead of me, was Neil on his bike, gesturing to three teenage girls as he rode past them. It looked like he was either giving them a thumbs-up or pointing ahead in the direction of the high school. I couldn’t tell what he was doing. But after he passed them and continued on, I could tell what they were doing. They were mimicking his gestures in an exaggerated manner. And laughing.

Unfortunately I have witnessed my son being laughed at many times. But because of that, I have learned how to respond in the most results-oriented way. I have lectured other kids, I have spoken angrily to them, I have glared at them. These reactions are instinctive. Of course, as parents, we are angry, we are incensed, at seeing our children disrespected in this manner. We want to lash out and make it right, even if our children weren’t aware of what happened at their expense. But what I have learned over the years is that if I approach the kids in an open, positive manner, most will respond much better than if I approach them with anger.

Neil was at least 50 yards ahead and didn’t notice me pull up to the three girls. I rolled down my window, smiled, and asked if I could talk to them for a minute. “Do you know that boy on the bike who just rode by?” Two didn’t, one said she had seen him when she was at the middle school two years ago. I continued in a pleasant voice. “Well, I just thought you should know that he has autism, and he’s my son.” I could see a little embarrassment on their faces. “Ohhh,” they said, “he has autism? We didn’t know.” I was glad that they seemed to know what autism was. Years ago, when he was younger, people didn’t. “Yes,” I continued. “Most people don’t realize that, so I wanted to mention that to you. He’s going to be starting at the high school next week, so I just wanted to let you know in case you see him around. Sometimes people with autism have behavior that’s a little different; thanks for understanding.” “Okay,” they all said, and the older girl said, “Thanks for telling us.” I thanked them again and drove off.

On my last post, M had mentioned the following in his comment:

I think the one thing people tend not to get (the general public, people not connected into autism issues) is the fact that every single step is uphill. There are no days you get to relax, not worry about it, coast on autopilot. If Neil is in a public setting…and especially a highly social environment like school…every day requires vigilance, effort…it’s all uphill.

Even when we have successful meetings, when Neil participates and advocates for himself, we never get to sit back and relax. Every day we contend with people who don’t understand, who might laugh at him, who might egg him on purposefully until he reacts in anger. These incidents will contribute to stress, self-esteem issues, and will definitely affect how well he does in school. It’s a constant battle. All uphill, just like M said.

And that’s why I talk to people every chance I get. It’s not easy for me, being an introvert, but it’s what must be done. That day, I talked to three girls. Three people. A drop in the bucket. But getting those three people on our side might make even a slight difference. And I’ll take it.

A few minutes later, I parked at the school near the bike rack. Neil soon rode up, dismounted, and began locking his bike on the rack. I walked over. “Did you know those three girls back there?” I asked him. “No,” he said. “But they seemed nice.” “Yes,” I said. “I think they will be.”