Monthly Archives: May 2008

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.

Comes the Dawn

Recently I wrote about experiencing setbacks with Nigel’s development and how it gets me down. It seems like I’ll never get a break. But what I didn’t remember is that usually when setbacks occur, soon afterward something happens that’s positive, a step in the right direction. And that’s exactly what happened today.

The school subject that Nigel has the most trouble with is math. Yes, math. Is that “anti-autistic?” I seem to read so much about how math appeals to autistic people because of the formulas, the predictability of working with numbers, and I don’t know why else because I’ve never liked math, so trying to come up with reasons to like it is a stretch for me. But I’ve always done okay with it, learned the basics, use them regularly, and identify the importance of mathematical knowledge as I’m trying to teach Nigel. But he has so much trouble with it (and no interest – must be genetic), that even when we go over the same problems and I walk him through so many and do them with him, he still doesn’t get it. After working on multiplying fractions for close to two weeks with no hope of him retaining any of it, I wasn’t sure what to do.

Then I remembered: break it down into written steps. That’s the only way I’ve been able to get him to pick up his room. That’s how some of his classroom teachers got him to work on activities and follow directions. And that’s how he was able to just get through the day when he was younger: having a schedule broken down into steps. I decided to break down the steps of what he was having the most trouble with – changing improper fractions into mixed numbers. Here is what I wrote for him:

Steps to convert improper fractions to mixed numbers:

1) Divide the numerator (# on top) by the denominator (# on bottom)

2) Write down the whole #

3) Multiply the whole # by the denominator

4) Subtract that # from the numerator

5) Answer is the new numerator for mixed #, placed over same denominator

He did the next problem completely unassisted in less than two minutes. I have to remember to break things down into written steps more often. Why do I forget? It should be common sense to me by now! Maybe I’ll remember better now, since I’ve written about it here. I think that’s something that works for both of us. 

Before Paragraphs: Typing

Because of Nigel’s aversion to holding a writing instrument, and his earlier difficulty with acquiring verbal skills, I had always thought that learning to type would liberate him to no end. He had taught himself to read at three and a half, so I didn’t think it was too much of a stretch.

I had purchased a kids’ learn-to-type CD-Rom program years ago, when he was about seven, but he had been resistent to working with it until we started homeschooling three months ago. Maybe it seemed academic to him and he didn’t want to do “work” outside of school. When school became something he did at home, he was only too happy to work with the typing CD-Rom during the designated time for electives. And he loves it.

That probably has something to do with the fact that the CD-Rom is by Disney – Adventures in Typing with Timon and Pumbaa. The Lion King was the first Disney movie he saw that motivated him to try to quote single words, his first attempts at echolalia. And I had seen it on the big screen when I was pregnant with him, so it’s always been a special movie for me as well. But now I love it because it has motivated Nigel to learn to type, and he’s enjoying it. He typed the horse video summary by himself, as well as several others. He says he’s going to type up a list of all his invention ideas.

So, typing, paragraphs . . . maybe next a mini-essay? A blog post? Not quite yet, but someday, quite possibly soon.

Paragraph Practice

As part of our homeschool program, I am trying, ambitiously, to teach Nigel how to write essays, since he will need this skill to achieve any success in his future academic career. It is proving to be difficult, needless to say. In his mind, an essay is a pasted-together document of sections of text written about a subject (usually found on Wikipedia). He cuts and pastes a paragraph at a time, until he has cut and pasted six paragraphs, clicks save, and triumphantly announces that he is finished with his essay.

After I explained to him the concept of plagiarism, and he got mad because his easy essay-writing method had been thwarted, I decided that we should back up a bit and focus first on paragraph writing. I had him watch an educational video about horses and had him write a one-paragraph summary. I had told him that the paragraph needed to have 5-7 sentences, but he claimed that if he combined two sentences that they should still count as two sentences. So his paragraph consisted of two compound sentences and one concluding sentence. Below is his paragraph, written in his own words, titled “The Horse.”

The first horse came to be 5.5 million years ago, but had 3 toes on each hind leg and 4 toes on each front leg. As time passed, the forests turned into grasslands and the horse lost all but one toe on each leg and those turned into hooves. The reason why a horse wins the Kentucky Derby is because it is just following it’s gut instinct.

Aside from that apostrophe, the paragraph is grammatically correct. But what impresses me the most is the complex idea that he takes as a given: a horse’s “gut instinct.” What is a horse’s gut instinct? Running? Feeling its hooves hit the ground? Trying to find its toes? I like the fact that his writing makes me contemplate different ideas. It also gives me a little insight as to how his mind works, and that is something I value and enjoy.

Setbacks

I suppose this is what it means to be the parent of an autistic teen. I start thinking Wow, he’s been doing really well lately, functioning, talking, responding well to the medication, being more independent. This is great! And then Blam! The phone rings, or I go to pick him up from somewhere, and someone starts to tell me that it’s really not great, that there have been problems. And then I get that brick in my gut and go into apology mode and why me? mode and I just wonder how much more I can take of this.

I went to pick Nigel up yesterday afternoon after the Scout camping trip he had been on. It was Friday night, Saturday all day, Saturday night, and they came home Sunday morning. He’s done so much with his troop that I figured he’d be fine for two nights and one full day. It had been hot there, and he didn’t just withdraw, he got mean. He complained endlessly, he told his patient Scoutmaster that he wouldn’t help clean or do any of his duties unless he would be taken home. He made everyone miserable and acted inappropriately.

I think the problem is that he just doesn’t realize when his behavior is inappropriate. He can’t regulate himself very well. The autism makes him think of himself and so he doesn’t sensor his reaction to things. He doesn’t care what anyone thinks of his whining and complaining, or care that a 13-year-old shouldn’t act that way.

And so I try to tell him. Again. And again. But I think what will do me the most good is to realize that this is how it is. Just because he’s doing well for a few weeks unfortunately does not mean that we’re in the clear. I need to accept that there will always be setbacks. I try not to think of my apprehension about his behavior as he gets older. He wants to attend the local public high school in a little over a year. He wants to go to college. All I can do is hope that he will continue to mature, to develop. We’ll cross those bridges when we come to them.