How It Ended

It was seventh grade that really kicked our collective butts. The proverbial straw that broke my camel’s back. It started off with Nigel getting punched in the face on the third day of school and only got worse from there.

It was during lunch when three boys verbally ganged up on him, riling him up, probably trying to make him lash out so that he would get in trouble. He was getting very agitated, verbally defending himself, and stepped in really close to the lead boy to try to make his point. Apparently Nigel “touched” the other boy on the arm. That made it okay for the boy to sock Nigel’s cheekbone, because Nigel had “touched” him. The other boy was exempt from reproof. The school’s dean called to tell me what had happened, adding in a condescending voice that he explained to Nigel that he shouldn’t “touch” anyone. He might as well have said that Nigel asked for it. I was livid. Let’s blame the autistic kid! Yeah! He started it! I wanted to wring all of their necks, especially the dean’s.

During the second week I noticed that Nigel was having problems at the bus stop, just two houses over from our house. The bus would pick them up just before I left for work in the morning, and often I would be walking out to my car and hear what was going on. Usually it was an argument: Nigel wanted to talk about Leonardo da Vinci and some girl would tell him to shut up because she didn’t want to hear about it. I didn’t intervene in those situations; I thought it best that Nigel learn that he can’t expect everyone to be interested in what he’s interested in. But one morning as I walked out to the car, I heard laughter. I heard Nigel’s angry tone. I looked and saw seven kids (one from his Boy Scout troop!) standing in a semi-circle with their arms crossed, laughing at Nigel. That was unacceptable to me. As I walked over there, one of the kids started walking behind Nigel, mimicking prancing movements, to the other kids’ laughter. I told them how disrespectful and wrong it is to laugh at someone who has autism and communicates differently. I told them I was disappointed in them, especially the Scout. I wondered how many times this had happened before.

From that day on I drove Nigel to school in the mornings. He didn’t want me to (“Mom, I want to be just like everybody else”), but I could not subject him to that treatment. The bus company, when they’d heard of what happened, called me to suggest that they send a sped (special education) bus to pick him up in the mornings. I almost guffawed at that! Did they actually think that picking Nigel up in a sped bus, in front of his peers, would help his situation? That would make everything worse! I told them No, thank you. On top of the bus stop issue, the hallway jeers still occurred on a regular basis, and during lunch Nigel was “accidentally” hit in the forehead by a rock.

It was at that point that I seriously began to consider homeschooling my son, as I have written before. When I had discovered some options to make that happen, it was late October, and I wouldn’t be able to make the change until January, so I planned on pulling Nigel out of the middle school at Christmas break. He didn’t make it that far. By the end of November, he had been suspended for being disrespectful to a teacher after having a girl verbally bully him in the hallway before class. When he walked in, he was so agitated that he couldn’t sit down, so the teacher ordered him to, and he just couldn’t take any more. “You need to sit down!” he said, and was suspended for it. The suspension was just a day, but it angered me that an autistic student was being targeted for behavior that was out of his control, after he’d been verbally assaulted by another student, who went unreprimanded because no one had witnessed it.

The first week of December I got a call from another dean at the school. Nigel had made an inappropriate, sexually explicit comment to a girl. I almost had a panic attack. This was one of the things I had feared. I’d read stories about parents being taken to court over things their autistic children had said or done, and I begged the dean to explain to the girl’s parents, who were understandably upset, that Nigel is autistic and did not understand what he was saying. I knew before I even talked to Nigel what had happened. A group of boys had encouraged him to do it. They were all standing around laughing, talking about “Wouldn’t it be funny if you walked up to a girl and said such-and-such,” and got Nigel to think it was funny. Nigel, at 13, has the emotional maturity of a nine year old, if that, and probably didn’t even understand it to be a sexual comment. I tried explaining this to the dean, but they still suspended Nigel again. I told him that Nigel wouldn’t be back.

And that was the end of the bullying.

False Friends

Because of Nigel’s social, extroverted nature and his desire for kids to like him, he would do anything to have what he thought were friends. I suppose I should consider myself lucky that he wasn’t coerced into doing anything illegal, but after what happened last year, I could see that things could easily get to that point.

As I described in yesterday’s post, the hallway torment resumed, and now it included more kids, even girls. They knew better than to try anything in class, since the teachers were now aware of what had been going on, but it was open season in the hallways. Nigel became so anxious in class just anticipating being harassed after class that he couldn’t focus and would become disruptive and get in trouble. I didn’t know what to do for him, so I thought I’d discuss options with his teachers and the special education coordinator at his upcoming IEP.

It was there that I learned of something else that made my blood boil, something I had been completely in the dark about. Apparently Nigel’s teachers in the classes he had after lunch had been wondering why he would come in the classroom hot, sweaty, and complaining of being tired. It was spring, but not yet hot. He would lay his head on his desk and not be able to get any work done, or refused to do any, claiming that he was “too tired.” Not one teacher had contacted me to discuss this. Finally, after a few weeks, one of the aids witnessed him running laps around the field at lunch. When asked why, he said, “My friends told me to do it. I have to prove to them that I’m strong enough.” These “friends” turned out to be a group of kids who would tell Nigel to run laps or perform various tricks and then laugh at his expense. But what was even worse was that when the adults at the meeting told me about it, they were laughing. They were jovial, as if my son was there for everyone’s amusement. As if it was funny that Nigel wanted to do these things. When they saw my face and realized that I did not find it to be the least bit humorous, they immediately became serious and assured me that they explained to Nigel that he doesn’t have to run laps and do tricks just because the kids told him to. That’s when I lowered my voice and said, “That’s not what is upsetting to me. Those kids need to be told that it’s NOT okay to get the autistic kid to do something and then laugh about it. They’re taking advantage of someone with a disability.” Why do educators only focus on “fixing” the autistic kids? Yes, the autistic kids need to work on inappropriate behavior. But so do a lot of the NT kids. What they were doing to Nigel was highly inappropriate, to say the least.

That’s when I remembered stories about autistic kids who’d had drugs or weapons planted on them by “friends” just to get them in trouble. I talked to Nigel that night, tried to gently explain to him that real friends don’t tell you to do anything. “But I wanted to do it. It’s okay because I’m strong enough.” “I know you’re strong enough. You’re stronger than anyone realizes. But if someone wants to be your friend, it will be because they like you for who you are, not because you can run laps or do tricks.” I saw the realization dawn on his trusting face. “Okay,” he said quietly. I hugged him tight and hoped that things would be better for him in seventh grade.   

When the Cat’s Away

Even before fifth grade had ended, when we had Nigel’s IEP meeting prior to the start of middle school, I had serious doubts. He would go from having had a full-time educational assistant in one classroom to navigating six classes without an assistant. How could he possibly have any hope of success?

I actually had very few concerns about Nigel being able to make it to his classes – he loved schedules and could easily follow maps. Getting used to a locker would be no problem – he loved mechanical stuff like that. What I worried about was how all the kids who didn’t know him would respond to him. I worried about how there would be no assistant to model positive interaction with peers, and to intervene when things went negative.

Nigel was never late to class, which astounds me considering what he had to endure, day after day. With no educational assistant around, the bullies had a field day. The worst of it was in math class, which was difficult enough for him without having kids make faces at him and hiss his name, which they discovered produced the response they obviously wanted. The hissing was hard on Nigel’s ears, distracting, and demoralizing. The faces enraged him, and he could not control his reactions. Of course, the kids only did this when the teacher’s back was turned, so there was no evidence against them. Only against Nigel, who was trying to get them to stop. But they would continue their attack as he walked to his next class, walking close behind him, hissing in his ear, calling him a “freak,” and I don’t know what else, since that’s all Nigel would tell me. Some of the boys were also in his Language Arts class, and they tormented him there, too. How much fun they must have had riling up the autistic kid, making him lash out so that he would then get in trouble.

Again, as in elementary school, I contacted the teacher (this time two). They said that they were unaware that it was going on, so they would have to bring in an aid or student teacher to watch the kids who were doing it and catch them. Wasn’t Nigel’s word enough? Wasn’t my word as a parent enough? Nigel’s rights as a student and a person were being violated, but it wouldn’t be “fair” to confront his attackers without an adult witness? I tried to suppress my anger and just work with the flawed system that protects the wrong kids.

Within days the aid had witnessed the bullying behavior while the teacher’s back was turned. That teacher notified the math teacher, and the bullies were lectured and told to write letters of apology to Nigel. And the hallway attacks abated, for a time. But they resumed within a few weeks, along with other issues.

Because of Bullies

That’s part of Nigel’s statement when he tells people that he’s being homeschooled. “I’m doing homeschool because of bully problems.”

When he was seven, I witnessed a neighbor boy call Nigel a “retard,” as I have written about previously. It’s possible that there may have been some of that going on at school as well, but to the best of my knowledge, and from what I was able to extract from him at the time, most of the bullying started in fourth grade. I don’t remember how it came up, but we were sitting around the dinner table, that hallowed place of family meetings, and he mentioned something about a kid spitting on his jacket. He didn’t want to tell me about it, he said, because he didn’t want me to worry. But I was able to drag out of him that two kids in his class had been cornering him at lunch and spitting on him. And Mama Bear was pissed.

I called his teacher and told her about it, and she assured me that she would have an aid watch them at lunch. Six weeks later, I noticed that Nigel had been pulling out his hair, so I asked him if the kids were still bothering him. He said yes. I immediately contacted the teacher, this time mentioning that I would call the boys’ parents if this wasn’t resolved quickly. The teacher told me that she would personally make sure it wouldn’t happen again. About two months went by, with me blithely assuming that surely now everything would be okay. Then I noticed another one of Nigel’s old stress indicators: severely chapped lips and mouth. He confirmed that he was still being bullied.

At that point I was so angry I was ready to take the school to court. This is discrimination against someone with a disability. My blood was boiling. I asked the teacher to set up a meeting with the principal and both of those boys’ parents. This ends now, I said. The teacher convinced me that she should have a meeting with the boys’ parents first, since they had not yet been notified, and after I calmed down, I conceded. I must have finally gotten my point across, because two weeks later when I asked Nigel if the boys were still bullying him, he said no. He said that the boys had apologized to him and that they were now “friends.”

Well, I guess a state of forced “friends” is better than ritual bullying. It just burned me to know that I had to throw my “Mama Bear” weight around to have them take me seriously. I shouldn’t have had to resort to threatening with litigation. Aside from the bullying issue, both of my kids did really well at that elementary school, and most of the teachers really cared about them. But I would have done whatever was necessary to get that situation resolved. I think they realized that, and that’s why, as far as I know, there were no more bullying issues the remainder of the time (one year) that Nigel attended that school.

Unfortunately, middle school was much worse.

Ask and You Shall Receive

Something . . . strange, but amazing, happened today. I am still in a sort of daze about it.

I took the boys to see a movie this afternoon, as promised for cleaning their rooms. They wanted to see Ironman, and I wanted to see Prince Caspian, so I decided to try letting them be by themselves. Another exercise for me in trusting and letting go. There have been previous times when we’ve gone to see a movie together and the boys have sat on the opposite side of the theater from me, and there had been no problems, so I thought they would be okay this time with me in a different movie. I bought them a few snacks, walked them into their theater, instructed them not to leave the theater unless they had to go to the bathroom, told them to wait for me in the arcade if their movie finished first, gave them a few dollars for the arcade, and told them I’d be in theater 2 if there was an emergency.

About half-way through Prince Caspian, I became aware of two people standing at the foot of the theater stairs, looking up into the audience for someone. One of them, I realized as my heart jumped into my throat, was Nigel. The other appeared to be a theater manager. Adrenaline coursed through me and I began to shake, thinking that either something had happened to Aidan, or Nigel had done something to cause a problem. Why me? Why now? Why? I dreaded whatever that manager had to tell me.

I don’t know what my face must have looked like as we stepped into the foyer and I tried to ascertain the mood of the manager. I was full of fear. The manager introduced himself as Mr. Bitteck (I believe) and told me that Nigel had requested a tour of the theater, and that it was fine, but that he needed a parent to come with him. I was in shock. I had braced myself for either horrible news about Aidan or a confrontation about something Nigel had done. I felt a bizarre combination of relief that no one was hurt or causing problems and exasperation that Nigel had not followed my instructions about staying in the theater with Aidan. I asked the manager if we could do the tour after the movies were over, and he said of course. So I thanked him, told Nigel to go back to Ironman and to stay with Aidan, and I wobbled on rubbery legs back to my seat.

I am glad that I had the remainder of a movie to sit through to be able to sort out my thoughts and feelings. If I didn’t, I might have chastised Nigel for not following my instructions, and I can see now that it would not have been the right time to make an issue out of it. I realized, as tears formed in my eyes during a battle scene of Prince Caspian, that Nigel had actually done something amazing. He went after a dream. He thought of something that he really wanted to do, and on his own he asked around to find someone who could help him. He has always loved movies. I just didn’t realize how much.

After the movie ended, I came out to the lobby and found the boys waiting for me. We asked the ticket taker to page the manager, and he came out and led us on an incredible tour of the projection rooms of the 15-screen movie theater (Cinemark Tinseltown). It was phenomenal. Apparently they only do this when certain individuals request it, and it had been a while since the last time anyone had. I was so impressed by Mr. Bitteck’s professionalism and his acceptance of Nigel as Nigel interjected the tour with trivia about film history involving Thomas Edison and the kinetoscope, the Lumiere brothers, and even the role of Nichola Tesla‘s work. Occasionally I would gently remind him, discreetly near his ear, “Let’s listen to Mr. Bitteck,” and he did. Nigel commented that he was excited to see a “piece of history,” and Mr. Bitteck confirmed that it was indeed just that. Within two years, the theater would be going completely digital. He also took us to an area where they splice the film and, at Nigel’s request, demonstrated how the machine worked. Nigel asked for a sample of the film and Mr. Bitteck offered to give him the spool of film for an entire trailer!! Nigel said, “I feel like I won the Kentucky Derby!” I tried not to cry.

We came out of the theater to a gorgeous sunset of purple, orange, and pink. Like the heavens were smiling with us. I drove home almost in a trance. I reveled in the wonder of what my son had accomplished, and what I had experienced because of him. I wished I could remember all the things I learned and all the things Mr. Bitteck had told us. Later, after dinner, I told Nigel that I was proud of him for doing something that was important to him. But then I quietly described to him how afraid I was in the middle of the movie when I saw him with the manager and I didn’t know what it was about. I think Nigel understood. He looked at me, and in the most sincere voice said, “Sorry.” And I hugged him and thanked him. Then he gave me a five-inch length of the film from his trailer. I will keep it forever, probably even frame it.

Last weekend I saw a really good local R & B band called Annie Mac, and in one of their songs, the vocalist sings, “If you want something, you gotta ask.” Nigel asked for something that he wanted. At one point during the tour, he turned to Mr. Bitteck and said, “This is the greatest moment of my life!” I hadn’t told Mr. Bitteck that Nigel had autism because I didn’t think it needed to be mentioned. But I believe he knew that he was in the presence of an exceptional kid. I couldn’t thank him enough.

C.A.C.U.R.

The room cleaning saga continues . . .

Last night Nigel came up with a couple of things he wanted to look up on my computer (his – the one he shares with Aidan – is now defunct, due to an “accidental” yes click on a spyware pop-up) and I came up with another way to motivate him to clean his room. No computer use until the room is clean. That idea did not meet with much enthusiasm. He growled, rolled around on the living room floor, then grabbed a pen and a half-sheet of paper and went back to his room. A moment later he reappeared, marching into the living room holding a hand-printed sign at arm’s length:

C.A.C.U.R.

                                             Children Against Cleaning Up Rooms

I tried to hide my smile, and then I made my own sign:

M.A.M.R.

Mothers Against Messy Rooms

And then Nigel tried to hide his own smile. We picketed each other around the living room, marching and smiling, holding our signs out in front of us.

Aidan, entering: What the heck is this about?

Open warfare, my love. This is how we roll. And Nigel was in such a good mood afterward that he spent a half an hour picking up his room. Looks like laughter is the best offense.

 

Evolution as a Defense

I am fighting a losing battle. Nigel’s room needs to be cleaned.

I have heard of some autistic people who need to have everything in its place and can’t stand if anything is out of place. Nigel is not one of those. If something other than his bed is in the same place twice, it is purely coincidental. I think he just has too much going on in his head for him to put something back where it belongs. I have also considered the possibility of laziness, which may or may not be fair, but this is getting ridiculous! You can’t even see the floor in there!

His designated room cleaning day is Friday, and something always comes up that makes me unable to enforce it. (Note to self: change room cleaning day on the schedule to a different day.) If I tell him that he cannot watch a movie until he has cleaned his room, then a friend will invite me out to dinner, and the safest, most reliable way to occupy Nigel while I am gone is to have him watch a movie. I have told him that he will not receive his allowance if he does not clean his room, and he doesn’t care. I have offered the reward of taking him to see the new Indiana Jones movie (which I know he wants to see), and even that does not motivate him. I have written down the steps to clean his room, broken them down visually for him: 1) pick up clothes, put in laundry; 2) pick up books, put on bookshelf; 3) pick up trash, put in trashcan; 4) pick up Lego, put in container . . .  all to no avail. And then I have to deal with this line of reasoning:

Nigel: But why do we have to pick up everything all the time?

Me: Because we are not animals.

Nigel: But we descended from apes!

Room 2

My first experience with disabilities was Room 2 at Los Molinos Elementary School in Hacienda Heights, California. Mrs. Lu, who in my memory did not appear to have any teacher aids or assistants, taught this class of approximately twelve children with various disabilities. That was “mainstreaming” in the 1970s. The kids in her class (ages 6 to 12 or so) had their own lunch table in the cafeteria; no one from another class dared to sit there for fear of being ridiculed by the rest of the school. The Room 2 kids all played together at recess. Occasionally one of them (I remember Stacy, a tall girl with long brown hair and large, thick glasses) would try to join in our games and would immediately be excluded, sometimes even chased away. It was taboo to even talk to “them.”

The rest of us were told that they were “mentally retarded.” That was all. Autism was not mentioned, nor Down’s Syndrome. No one explained what “retarded” really meant, and that not all of those children were retarded. No one tried to teach the rest of us to integrate them, to accept them, to think of them as kids. No teacher suggested that they had feelings like the rest of us. So we recoiled from them. I didn’t feel right about it, but at age eight I didn’t have the strength to stand up to other kids and say, “There’s nothing wrong with them! They want to have friends too!” I certainly couldn’t bring myself to taunt them with shouts of “Retard!” like many of my classmates did, but neither could I bring myself to stop the taunting. I just walked on by, pretending it didn’t concern me.

And now I have a child with autism. I remember when he was seven, hearing someone shout “Retard!” at him in my own front yard. I dashed out the front door and yelled at the boy who said it, “Don’t you dare call my son that! You need to leave now!” I wish I could have slapped that boy across the face. He must have come over because he wanted to use Nigel’s wagon. Or else he was just bored. I didn’t know what to make of it. Too many thoughts rushed through my mind. I wondered how many times Nigel had been called “retard” that I hadn’t heard, like at school.

Room 2 still stands out in my memory. I wonder about the school district’s protocol back then. Why the segregation? Was it fear? Laziness? I am glad that their ideas about students with disabilities have changed, but they have much farther to go for mainstreaming to be successful. Teach acceptance. Teach empathy. Is that so hard? Kids these days are taught about internet safety, recycling, birth control, and plenty of other non-academic subjects. Surely teaching them how to have respect for others, especially those who have disabilities, is at least as important. If we’re going to have more and more autistic kids mainstreamed into the public school system, they need to have the “free and appropriate education” that has been promised to them. Being excluded and called a retard is in no way appropriate. It’s time to retire the Room 2 mentality and make some real progress.

Metalman

We spent most of Memorial Day weekend at home, with Nigel a bit sick, camped out on the couch having a Star Wars marathon. His OW (Obsession of the Week) this week is metal, including anything in Star Wars that is metal, such as droids, and how he might build his own that will clean his room and do the cat litter.

He is also coming up with his own metallic phrases. This morning I poured us each a bowl of cereal and milk (our usual breakfast) and opened up the silverware drawer for spoons.

Nigel: Uh, plastic, because this – [holds up metal spoon] – makes bacterial galvanization.

Bacterial galvanization. I actually tried looking that up on Wikipedia to see if I could find anything about it, but the two words do not appear together under any configuration. It reminded me of when he was six and started combining words to communicate. He would say “balling snow throwing” to describe a snowball fight. “Circle chocolate cookie” was how he requested Girl Scout Thin Mint cookies. And now, at 13, he has created the phrase “bacterial galvanization.” I have given its potential meaning careful deliberation. Does it refer to bacteria in the mouth interacting with metal to form a nasty aftertaste? That’s what I’m going to go with, although I don’t notice any metallic taste from my silverware. But Nigel might.

So there you go. “Bacterial galvanization” is the aftertaste you get when you eat off cheap silverware. I’ll notify the Merriam-Webster people, but you heard it here first.

Little Transitions

Those who live or work with autistic individuals know that transitions can be difficult. There are the big transitions, like starting a different school, moving to a new house, dealing with major schedule changes due to divorce, etc., or some other big change. They are the mountains that we sometimes have to climb. And they often feel insurmountable.

But what about the little transitions? The daily hurdles that for some autistic people cause such an upheaval? The minor changes that sometimes come up due to a cancellation? Even the regular transitions between daily activities can be difficult to navigate. A small part of me understands because of the way I feel about bathing and swimming. I love to be in the water, but I’d rather not experience the transitions involved in getting in and getting out. I’m cold when I first get in the shower, cold when I get out, and then I have to deal with wet hair and skin. My own little sensory issue? Probably. Of course after I’ve dried off and gotten dressed, I always love feeling clean and relaxed. But I take that feeling of not liking the transition and I apply that to how I deal with Nigel when he’s having trouble with a small transition. A little empathy goes a long way.

When he attended the middle school, he had trouble with transitioning from class to class. It wasn’t because he would forget where to go. It was because the halls were noisy and kids would come up to him and harass him and he’d get to his next class angry and the teacher would tell him to sit down and that only added to his negative frame of mind. It wasn’t because he didn’t want to change classes. He just had trouble with the transition. And the school wasn’t willing to let him leave class three minutes early to avoid that. Yet another reason why I decided to homeschool him.

Now that he’s home, he no longer has difficulty transitioning to different school subjects. But we still experience some trouble with transitioning between activities, especially if the new activity takes him away from Lego building, YouTube surfing, or movie watching. You would think that a teenage boy who eats non-stop would be happy to hear the phrase “Dinner’s ready!” and come running. Not so. His typical response is “That fast?!” in a disappointed tone. I have tried modeling more appropriate responses for him, such as “Thanks, Mom” or even “In a minute,” but it has become such a habit for him to say “That fast?!” that I can’t seem to break him of it.

But I often forget the all-important warnings. “Dinner is in 15 minutes,” and then “Dinner is in 5 minutes” to ease him into it. It’s hard to remember all the enabling things you have to do as a parent of a child with a disability, just so that things run smoothly. Even when you do them for so many years, you can sometimes forget. And I try not to think about the fact that he probably says “That fast?!” when he’s visiting a friend’s house and the friend’s parent says “Dinner’s ready!” Maybe next time he goes to a friend’s house, I’ll email the parent the link to this post. And they can read about how to manage their child’s high-maintenance, sometimes inappropriate friend! Or I’ll just apologize in advance for his apparent rudeness. 

I used to try to enforce a rule at the dinner table: no toys allowed after age 6. “Only little kids need toys at the table,” I’d say. But Nigel always had to bring a piece of whatever occupied him before dinner to the table: an action figure, a Lego creation, a stuffed animal, a magazine. It seemed to be the only way he could transition. And whenever we left the house, he did the same thing. He would keep a little something from home in his pocket and hold it periodically. Like his own way of saying, You can take it with you. So I finally realized, okay, this is what he needs. And I changed the no-toys-at-the-dinner-table rule to “No toys bigger than an apple at the dinner table,” and everyone’s a lot happier.

I think the bottom line is figuring out how to work with the little transitions. The big ones are a different story, but the little ones can be more manageable provided that you’re willing to act like an enabler. Let them bring something in the car or to the dinner table. Give notice when it’s nearing time for a change of activity, even dinner. Yeah, I wish I didn’t have to do that with a teenager. But when the goal is to make a transition smoother, and I find a way to do that, I’m just going to go with it and not worry about how much of an enabler that makes me.  The day will come when we’ll have to transition out of that mode, and I’ll deal with it then. I’m sure I’ll come up with something that works.