All Done IEP

When Neil was about six and seven and using some spontaneous speech, he would tell me when he wasn’t comfortable with a situation. “All done rafting,” he said when I took him rafting on a mild part of a local river. “All done doctor,” “All done wash face,” and “All done vacuum” were heard frequently, or just “All done” between hiccupping sobs when something really upset him. It is in this spirit that I attended his IEP meeting today.

I know they mean well, the IEP team. Of course they do. One of them has known and worked with Neil for ten years. But when I tell them the poignant story about Neil doing art therapy in his yearbook, drawing ape faces on all the faces of the kids who had bullied him at that school, and the IEP team tells me that “a lot” of it was Neil’s “perception” that the kids were bullying him, it makes me want to scream. It makes me want to knock a few skulls, okay? And then they suggest that maybe in a couple of months Neil might be able to come back part-time (since I am currently homeschooling him). So I try to diplomatically reply, “Neil really does not want to set foot in this school again. It’ll be all I can do to get him to agree to come to the once-a-week social skills class.”

IEP meetings tend to be the bane of every special needs parent’s existence. Until just a few years ago, I had two kids on IEPs. I thought I was tough. I thought I could do an IEP in my sleep. Seven years ago, my children’s father moved 700 miles away, and so I have attended these IEP meetings alone. And no matter what, no matter how many of these I have attended in the last eleven years, I still feel just as vulnerable. I still feel myself on the verge of tears, trying to hold it together, trying to convey to them No, it WASN’T just Neil’s PERCEPTION that he was being bullied. How could they say that to me? After all that my child has been through? After all the calls they made to me at work, telling me I had to pick him up because of some behavioral issue they couldn’t handle. Because the constant bullying had driven him to such an agitated state that he could not even function. He could not make it through the day. It was not just his “perception.” That much I knew, as I breathed in sharply and felt my heart rate increase and my blood race through my veins at 8:15 this morning. I just looked at the person who said it. And then I looked away.

After that, we discussed his IEP goals, we talked about the social skills class, they asked how he was doing (much better now that he doesn’t perceive himself to be bullied anymore, thank you!), and they provided some math and writing materials that will be helpful for homeschooling. We discussed the benchmark testing he will need to do in the spring. We touched on options for high school next year.  We signed the papers. Said Thank you for coming. Went through the motions.

But at the end of the hour, as I walked out to my car, I realized that even though I had been upset by someone’s insensitive remark, my mantra pulled me through. “In an hour this will be over, and Neil’s needs will be met.” This is what I say to myself before every IEP meeting. And somehow, no matter what happens, it works. All done IEP.

No More Heebie-Jeebies

Like many families with autism, we start planning for Halloween early. When Nigel was younger, it was to prepare him for the sensory issues that would come up. Eight years ago, the Halloween that he was six, while we carved pumpkins I played a cassette tape of “spooky” sounds: wind blowing, doors creaking, chains dragging, and an occasional howl or scream. Nigel was very disturbed by the tape, so I shut it off so that he could join us with the pumpkin carving. For the next hour, even though the music had remained off, Nigel would say every few minutes, “Music is off. Music is finished. No more music.” We didn’t hear much spontaneous speech from him in those days, but he was really motivated to tell me how he felt about that tape. Every time he said it, I assured him in a calm voice, “That’s right, no more music,” but he continued to make his statements until we were completely finished carving the pumpkins. (I realized that maybe because I left the tape player in the kitchen with us that he was afraid that the music would start again; I should have put it away, out of sight.) The following year, when Nigel was seven, I mentioned getting pumpkins to carve for Halloween, and the first thing out of his mouth was “And we will not play the Halloween music.” (His sentence structure improved greatly that year.) Then he said it a few more times that afternoon, and we hadn’t even bought the pumpkins yet.

But in recent years, the reason we start planning for Halloween early is because we love it so much, especially Nigel. We have many decorations to put up – both inside and outside, costumes to piece together, a party to plan (Nigel’s birthday is October 27), and movies to watch. Our all-time favorite is Disney’s The Legend of Sleepy Hollow, and we try to watch it only in October. Nigel couldn’t wait any longer and had it on the other day. I walked past him as he watched it in the living room, and he commented, “Brom Bones is a bully. He is an angry DNA strand.”

Brom Bones I told him that was a good way to put it.

Then a few minutes later, after the scene in which Brom Bones sings his spooky song at the end of the party, Nigel said, “I remember when those kinds of sounds scared me. They really gave me the heebie-jeebies – when I was a little kid. But I’m not afraid anymore. You know that music you played while we used to carve pumpkins? I don’t mind it now. Because I’m a little older.”

Halloween? Scary? What scares me is Nigel’s memory.

Dinner at Our House

The following uncensored conversation took place in our dining room tonight:

Nigel (seated at table): I don’t want hot dogs tonight. I want to choose what I want for dinner.

Aidan (seated at table): What’s with the whole wheat buns? You know I hate these.

Me (a few feet away in the kitchen): I have work to do tonight, so I made something quick for dinner. [I start grating cheese on the nachos I am throwing together making for myself. The boys are silent for a few minutes as they eat.]

Aidan: Stop staring at me!

Nigel (matter-of-factly): I’m going to say something to you. I’m making eye contact.

Aidan: Well you don’t have to look at me!

Nigel: I’m going to build a time machine and go back in time to stop JFK from being assassinated.

Aidan: Time machines don’t exist.

Nigel: I’m going to invent one.

Aidan: It won’t work.

Nigel: I’ll go back to November 22, 1963 . . .

Aidan: I don’t even care, Nigel.

Nigel:  . . . and I will save him.

Aidan: Stop staring at me!

Nigel: I’m making eye contact because I’m talking to you. It’s a social skill.

Me: Aidan, if he’s talking to you, it’s okay for him to look at you.

Aidan: Well, it’s rude! [He stands up and walks over to the kitchen counter where he deposits his dinner plate with the untouched wheat buns still on it and goes to his room. Nigel, meanwhile, continues laying out his plans for thwarting the JFK assassination.]

I take my nachos out of the oven and sit down next to Nigel, who has eaten his whole wheat buns. He tells me his ideas, like suggesting to JFK that he use a “decoy” in the car. I suggest having him re-route the motorcade. “That would make the assassins suspicious, Mom.” I suggest that an inflatable President in the car would as well. “It could be mechanized so it would wave.” All this time he is making perfectly appropriate eye contact with me. He is conversing. And I’m trying not to dwell on the fact that my other son stormed out of the room (thanks, puberty) yelling about the very thing that Nigel has so diligently been trying to accomplish.

Someday, we will all sit around this table at the same time, all with the same food, and we will converse, and we will not have accusations of staring and rudeness flying around. It will probably happen right around the time that Nigel invents his time machine.

The Calendar and the Rebel

The calendar is sacrosanct to Nigel. It helps him to organize the vague concept of time, helps him to mentally prepare for upcoming events, and it even helps him to decide what to wear. He takes the concept of seasons very seriously and dresses according to the calendar, not the weather. Spring means short-sleeved shirts, even if it’s still snowing. If we’re having a really hot day in May and I suggest to him to wear shorts, he maintains, “It’s not summer yet.” Summer means shorts, no matter what the forecast. But no shorts before it’s officially summer. And by God, no pants before fall.

This morning as we were beginning homeschool, it was a bit chilly in the house, so I put on jeans and a sweatshirt. I suggested to Nigel that he might be more comfortable in pants rather than the shorts he had slept in. His reply was automatic. “It’s not fall yet.” I jumped up and ran to the calendar.

“But it IS fall!” I said, gesturing wildly to the calendar. “Today is the first day of fall! It’s printed right on the calendar!” The thought occurred to me that I was enjoying this just a little too much.

Nigel got up off the couch and came over to check. His eyes got a little wide when he looked at the calendar, then quickly narrowed. “Well, I’m fine,” he said, not looking at me. “I’m warm enough. I don’t need pants. I’m keeping the shorts,” and he marched back over to the couch and sat down.

I don’t know which shocked me more – his nonchalant, rebellious response or the fact that it really was the first day of fall, and it just so happened that I could point it out to him on a day that I suggested that he wear pants. I admit I had a little fun with that. But I’m glad that his effort to rebel against my suggestion has made him less rigid about adhering to his self-imposed seasonal dress code. This is definitely a step in the right direction, an openness to change. Never mind the emerging need for rebellion! We’ll just ignore that issue for now. After all, a little flexibility goes a long way – for both of us.

Lost and Found

I have often said that I have a gray hair on my head for each time the school called me about some behavioral issue, each IEP meeting, and each public debacle we have survived. But I have more gray hairs that were caused by my son getting lost than by everything else combined.

Nigel is a wanderer. Up until he was about seven I had to have a lock high up on the front door or he would just run out and take off down the street. I wondered how I would handle it when he got older and could reach the lock. Implant one of those tracking devices? He was a runner, and it worried me. But something happened when he started to talk. He seemed to have less of an inclination to want to escape, and saying, “Stay in the house” was something he could understand. I felt like I could breathe a little bit more.

But the wandering nature is inherent. Whenever we are away from home, his exploratory urge kicks in, and he takes off if I’m not constantly watching him. Sometimes, in recent years, he tells me where he is going, but the odds are that he will not still be there when I come to collect him. Something else will have caught his attention, and he will have moved on. And I will spend the next half an hour running around looking for him, wringing my hands, imagining someone taking him, considering notifying the police, and basically driving myself into near-hysteria.  And it just happened yesterday. Again.

We had gone to a large park in a nearby city where an international fair was being held with lots of booths, exhibits, musicians, dancers, and food and craft purveyors. Nigel informed me that he wanted to go to the playground. I said okay, later wishing I had added, “and wait there for me.” After about ten minutes, we made our way toward the playground, and as we neared it, I glanced around for Nigel. I saw him scaling a mini climbing wall and started walking in that direction, briefly looking at some traditional Mexican dancers off to the side.  A moment later I reached the climbing wall, and there was no sign of Nigel. I went around the back of it. Not there. I looked at every playground feature. No Nigel.  Not again! I wanted to yell. How does he continue to do this to me?! He was just here!

I looked at the surrounding area, up in trees, around bushes (in case he had followed a bird or squirrel), all around. No sign of him. I informed the rest of our party (Aidan and my boyfriend) that Nigel had taken off, and they joined in the search. We walked through all the booths, went beyond the playground where there was an inflatable jumping/ball-pit thing attracting lots of kids, and even checked the belly dancing show going on. No Nigel. Then I retraced our steps back to the band we watched when we first arrived. Then I went back to the playground. I ran into my boyfriend and he suggested notifying the police. I said I wanted to make one more sweep first. I went beyond the playground, past the inflatable jumping/ball pit thing, past the belly dancing, and there, there, around the other side of all of that, was a fire engine. I saw Nigel’s head in the side window of the fire engine. He was seated with a bunch of little kids less than half his age, smiling and excited to be sitting in a fire engine. Oh, my son.

So many times have I felt this emotion without a name. It is a combination of intense relief, but also frustration, a little anger, and exasperation. The relief, of course, overpowers everything else. But how many times must we go through this? How many times must Aidan help look for his older brother? How many times must our plans be disrupted? How many times must I fear that he’s been taken? It is still so hard to bear, that sense of dread. The hysterical fear that he has been taken.

And yet, somehow I bear it. I must and I do. I say to myself when I find him, He’s okay, and that’s all that matters. And I admonish him for not staying where he said he’d be, and he apologizes, and we go on our not-as-merry way. And I think some more about implanting a tracking device in him. Or getting walkie-talkies. That is, if his could be strapped on to him somehow. Otherwise, I’d have a lost son and a lost walkie-talkie. Not to mention more gray hair.

The Mind Tree: A Review

The Mind TreeThis astounding book was written by Tito Rajarshi Mukhopadhyay, a non-verbal autistic boy whose mother taught him to write at the age of five. He wrote The Mind Tree between the ages of eight and eleven, and it is nothing short of amazing.

The first half of the book is a detailed autobiographical account from age two to eleven. Tito writes in the first person point of view, but uses the third person when referring to his younger self (for instance, “It was a worse show when he was three and a half years old.”) He also describes the thoughts and feelings of his parents in many situations, exhibiting a surprisingly advanced theory of mind. One of the delights of this book is Tito’s insight and his ability to explain some of his autistic behavior, such as analyzing why he spins. He says that his body felt “scattered and it was difficult to collect it together. He saw himself as a hand or as a leg and would turn himself around to assemble his parts to a whole.” And “He got the idea of spinning from the fan as he saw that its blades were otherwise separate joined together to a complete circle, when they turned in speed.” Tito also describes the “distorted . . . meaningless babblings” that he made, and suggests to “guardians” of other autistics that they discourage those sounds, claiming, “Being mute is better than distortion.” Later, he tells about how his mother helped him to “find” his voice by physically forcing it out of him via pushing on his back as he attempted to verbalize sounds. I found all of Tito’s detailed descriptions of his childhood to be intensely fascinating.

Equally wonderful are the remaining parts of the book, including a section of essays written about his interpretations of color and how they manifest themselves in his autistic mind. Tito also writes beautifully crafted, evocative poetry, such as “All the world was a busy place, And I was an idle kind, Disqualified in the human race, A different form of mind.” We readers are also treated to the lovely imagery of his short story called “The Mind Tree,” which is a touching tale told from the point of view of a tree.  Tito is truly a gifted writer.

This book is quite a find. I stumbled upon it in a bookstore a few years ago, and I am drawn in each time I read it. Tito’s message of hope is evident in every word he writes, but especially in the ending to his first biographical section, which he wrote at age eight: “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being – ready to grow together.” His words certainly prove the maxim that not being able to talk does not mean the same as not having anything to say.

When Talking on the Sidewalk Isn’t Enough

Nigel: Can eighth-graders have dates?

Me: What did you have in mind?

Nigel: Stephanie.

Me: No; what did you have in mind for what you wanted to do for the date?

Nigel: A movie date. But I have to decide what movie.

Me: Maybe you should let your date decide.

Nigel, eyes wide, smiling, high-fives me: Genius! I can learn about dating from you!

Me: I think that’s an excellent idea. Many parents don’t feel comfortable with their kids dating until high school, so you can spend the next year learning about dating, and then you’ll be ready.

Nigel: Well, I have another idea. [Leaves my office, runs down the hall to his room, returns in a moment brandishing a 2 x 3 school photo from last year, which was taken without my knowledge that it was Picture Day, and he had left the house that morning in a dirty old T-shirt that said “Baseball” across the front.]Next time I talk to Stephanie on the sidewalk, I can give this to her to show her parents so that they can have a visualization of me.

Me: Well, they’d probably want to meet you first, anyway. And me [the mother who lets her son have school pictures taken in a ratty T-shirt]. But let’s wait until high school, okay? I’m sure Stephanie’s parents would feel better about that, too.

Nigel: But what if they don’t?

Me: We’ll cross that bridge when we come to it.

Nigel: You mean like in The Emperor’s New Groove?

Me: Yes. With sharp rocks at the bottom.

Nigel: Uh, Mom, the scene with that line was when they were going over the waterfall, not the bridge.

Me: Oh. Right.

Yearbooks As Art Therapy

Those of us who have ever had some type of counseling or psychotherapy know how beneficial it is to be able to talk with a professional about what’s going on in our lives and how we’re handling it (or not). Therapy is also helpful for discussing past events, especially traumatic ones, how they affected us, and how we can work through them. But what if talking is difficult for you? Or impossible? What if you don’t process events and emotions verbally? ASD people encounter just as much, if not more, stress and difficulty while trying to function in an NT world, and many of them have past issues they need to work through as well.

Enter art therapy for autism. When thoughts and feelings cannot be discussed verbally, art therapy works wonders. It helps to stimulate imagination, regulate sensory issues, encourage hand-eye coordination, and express emotions (including stress). Other long-term benefits include developmental growth, recreation, and self-expression. But there can even be profound benefits from just a single session of art therapy. I witnessed this last night with my autistic son.

Ten months ago, I removed Nigel from the middle school where he had been mainstreamed. He had endured daily bullying, both physical and verbal (and, of course, emotional). This put him in a constant state of anxiety and agitation, making him unable to focus and learn, unable even to function. Soon after removing him from that environment, he became much calmer and was able to focus while being homeschooled. On a weekly basis, even though months have gone by since he attended that school, he mentions how much bullying angers him or mentions something in general about bullies. I’ve always assured him that he wouldn’t have to deal with that anymore. But what I didn’t realize was that Nigel had not yet worked through the trauma of his ordeal. He couldn’t really talk about it, other than his occasional comments, and that wasn’t enough. The memories were still painful for him.

Then last night Nigel brought out his yearbook. He showed my boyfriend a picture of a girl he liked, and my boyfriend joked about how he used to draw moustaches on yearbook photos. Nigel laughed and went back to his room. He came out an hour or so later with a Calvin and Hobbes book and showed us a series of cartoons about Calvin’s bully, Moe. In one cartoon, Calvin mimics an ape as he quietly walks behind Moe. Moe and CalvinNigel couldn’t stop laughing at the cartoon. He went back to his room and came out a few minutes later with his yearbook, showing us how he had used a ballpoint pen to make the face of his worst bully into an ape face. He laughed some more and went back to his room, where he proceeded to laugh non-stop for over an hour. Finally, his laughter subsided, and I went to him to suggest that he get some sleep. He proudly showed me his yearbook. Each page of every grade level had several ape faces drawn over the bullies, both boys and girls, who had tormented him. I fought back tears and didn’t want to count how many faces he had drawn on; there were many. I couldn’t bear to think of how horrible it really had been for my son, day after day. I’ve always known that the decision to homeschool him was the right one, but now I had validation. And it sickened and angered me.

But Nigel had found a way to work through his anger. He devised his own art therapy. He scribbled out his anger while eliminating the bullies’ facial features, and then he laughed while adding humiliating details like hairy necks and stupid grins. And he felt better. As I said good night to him, he told me, “Now I can sleep without thinking about the bullies.”

I’ll try to do the same.

Echolalia Strikes Again

The scene:  It is a beautiful sunny day. A group of four is having an early dinner at a bistro-style restaurant with outside seating. They are seated at a table near a walkway that borders a pretty creek framed by lush trees and foliage.  People are strolling by, looking at craft booths set up farther along the walkway. A young couple walks past the table of the four people, glancing at the teenage boy who is maniacally waving his arms around, yelling about bees. He gets up and runs off about twenty feet. The woman in the group of four, presumably his mother, coaxes him back to the table with a glass of soda, assuring him that the bee is gone. The boy reluctantly returns.

The young couple surveys the pretty, burbling creek. Their arms are around each other; they are enjoying the romantic setting.  They begin to kiss.

Teen boy at table says in loud voice:  Looks like we’re about to encounter a saliva exchange.

The other occupants of the table try to stifle their laughter, and the boy smirks and says, “That’s from My Favorite Martian.”

The mother doesn’t dare look at the young couple behind her. Signaling her son to keep his voice down, she holds her finger to her still-smiling lips and hopes that the food will arrive soon.

3 Steps to Ending Chore Wars

As the eldest of four children, I had a lot of household chores and responsibilities while growing up. I didn’t like it, of course, but I did what was expected of me. I had read stories about kids growing up in the country having many more chores than I, so I figured my lot wasn’t so bad.

Nigel sees it differently. He balks at the few chores I have him do, complaining about slave labor and communism. “Cleaning rooms is for nerds,” he says. Cajoling, begging, and trying to reason with him (“Everyone has responsibilities,” I say) is usually unsuccessful. So I came up with a plan:

1) Create a chart – a visible reference, like the schedules used in his early intervention classes. It lists what he does when, each day. It has spaces for star stickers or checkmarks to indicate when chores are completed.

2) Offer rewards – positive reinforcement for completing chores. He’s a teen, so it has to be something that will really motivate him. Two things he loves the most: renting movies and having friends spend the night. So when he receives a certain number of star stickers, he can rent a movie or have a sleepover.

3) Withdraw privileges – negative consequences for not completing chores. Two things he would miss: watching movies in his room every day and having computer time. For each day a chore is not completed, he will lose time doing what he enjoys.

This is an experiment – I’ll report back with how it goes! Unlike communism, I think it will work.