Change is Good...Right?

The Greek philosopher Heraclitus proposed over two millenia ago that the only enduring thing in the universe is change. His theory has been reiterated thousands of times throughout the ages by Plato, Emerson, Tolstoy, Gandhi--even Bob Dylan crooned that "the times, they are a-changin'." And we as human beings do our best to embrace change a-la the adage, "Change is Good."

For Ben, however, change is not good. This was made clear to me about a week ago, when he lost his first tooth.

I knew the tooth had been loose--he showed it to me several days before and asked about nine dozen questions related to the process of tooth loss, tooth growth, and the whereabouts and lifestyle of the tooth fairy. I thought we had covered all necessary preparatory ground.

Still, one morning at breakfast last week, I looked over and saw Ben sitting still as a statue at the breakfast table, staring blankly ahead, "No Vacancy" emblazoned across his face. I was a bit startled. "Ben, what's wrong?" No response. "Ben, are you OK? What's wrong?"

His facial expression never changed, only tears began to roll down his cheeks. I hurried to take him in my arms as he unexpectedly sobbed, "My toof is yoose and it's going to fall out of my mouf and I don't want my toof to come out of my mouf!"

I assured him that everything would be OK, and inspected the "yoose toof" to discover that it was hanging by just a thread. I encouraged Ben to just jerk it out, but he refused--he wanted it to stay right where it was. So, I sent him to school, figuring that nature would take care of the extraction.

That afternoon I went to the school to pick up a cookie dough order, and figured I'd get the boys from school at the same time. When Ben reported to the office, the tooth was even less attached to his jaw than it was before school started, yet still it clung to his gums by the thinnest of filaments, and still Ben refused to pluck it out. Nor would he let me finish off the task. However, when a brave and compassionate school secretary offered to help, Ben was happy to stand in front of her, expose the dangling denticle, and not so much as blink as she counted, 1-2-3! And then plink! The tooth was out. We cheered, we applauded. Ben stood stoically, ne'er so much as a smile, just waiting for the tooth to be placed in a plastic bag, and that was that.

Change has a way of springing up around this time of year, though. For instance, Ben's Primary (his children's class at church) teacher mentioned a few weeks ago that at the beginning of the year, Ben really struggled in Primary. But now, he seems to have settled into the routine--the sameness--of it all. Tragically, the routine is about to change. Come January, Ben will be moved to a new class, a new teacher, a new meeting schedule...so buckle up: blasting zone ahead. Be prepared for the earth to shake for a while. Ben's behavior will deteriorate until he feels comfortable with the new routine. I'm not speculating: this is a time-proven fact.

I'm also noticing that his behavior at school has become more erratic of late: some good days, more bad days. Some good behaviors, more problems with pushing classmates, crawling under desks for large amounts of time, and avoiding class- and homework. Everything is in flux at this time of year: the weather is changing, the time zone is changing, and the daily schedules are changing as classes prepare for Thanksgiving feasts and Christmas programs. Even our home is changing as we begin to rearrange furniture in anticipation of a Christmas tree and holiday decorations. The very atmosphere of life is changing as we move into and through the festivities of winter.

For most of us, these changes make sense and we adapt quite quickly. For Ben, they represent chaos and confusion. Remember the title character in the old 1980's movie "Rain Man"? That character had to watch the same t.v. show every night, and purchase his underwear at the same K-Mart, in order to keep his world together. Ben's not so extreme--he won't bang his head and scream if we pick up some Underoos at Walmart--but routine is still critically important to him. When it changes, so does his behavior. And not in a good way.

So for us, change might be good. But for Ben, change is overwhelming. Unfortunately, Heraclitus had it right: change, for good or bad, is the only thing we can ultimately count on. How do I teach Ben that change IS routine? The irony will certainly be lost on him...it is on me, too.

You're Breaking Up

A few days ago during one of Ben's not-so-good days, I became quite frustrated with him. I lectured him for several minutes and then, noticing that he wasn't hearing a word I said, I asked, "Ben! Do you understand what I'm saying to you?" He looked up at me and replied, "Actually, no. You're breaking up. Sorry."

I laughed at first, but then realized that he might have been accurately describing his experience. James Ball, author of "Early Intervention & Autism," stresses that autistic children struggle to process verbal information--particularly in chaotic situations. I'd say that between my raised voice, the blaring television in the next room, and his siblings' nearby hooting (apparently I've given birth to a parliament of owls), Ben wasn't able to process much at all of my tirade. It may truly have sounded to him like I was breaking up, as the synapses in his brain fired on and off in an effort to process all the sounds around him.

Ball's comments also help explain Ben's urgent need to find signs and symbols that represent verbal words. For example, last summer Ben and I were attending one of Joey's (my 9-year-old) baseball games. I was so pleased to look over at one point and discover that Ben was standing among a few other children who were about his age, rather than wandering around by himself. Suddenly, though, he reappeared back at my side and said, "Mom, how do I say 'I don't know' in sign language?" I told him that I wasn't sure. He responded, "Oh. Maybe it's like this," and then he made a series of enigmatic hand motions, pointing to his head, then waving his fingers away from his body. Satisfied that he had figured it out, he ran off again toward his new friends and immediately repeated his signals as if everyone might take his meaning. He didn't seem to notice the blank look on the children's faces as they watched him and then turned back to their own games.

One evening several months ago, I instructed Ben to go upstairs and get his pajamas on. He turned to me, blew directly into my face, and then explained, "If I blow on you, it means yes." And then he trotted upstairs to change his clothes. For several days after that, he regularly blew in my and others' faces as a way to express his opinion--sometimes positively, and sometimes not.

It's hard to have a conversation with Ben, partly because he loses interest a few sentences into the effort, but also because if Ben's train of thought gets derailed midway through a sentence, he can't just pick up where he left off. He has to go back to the beginning of the sentence and start over again. Often Ben will begin a sentence four or five times before he can get all the way through it--and he and his listeners get frustrated after too much of that. Tonight, Ben was trying to tell me about something he learned in school. He started talking, but then stopped and said, "Wait. That was a mess up." He tried again, but again stopped mid-sentence and said, "No wait, that was another mess up." And then he started a third time, only to stop yet again to announce that he had made another "mess up." Finally, on the fourth try, he was able to verbally express his thought.

I know the frustration of talking to someone on a cell phone that cuts in and out. I wonder what it might feel like to have regular, face-to-face conversations cut in and out in the same way. Probably I'd do just what Ben does--I'd find new ways to communicate, preferably without using words, or I'd simply stop trying to listen. Because really, there's not much more frustrating than having to tell someone, "I can't hear you--you're breaking up!"

What's a Picture Worth?

Ben was the easiest baby born to human parents. He was docile, quiet (too quiet, really), and content to sit in one spot for hours, staring blankly at whatever parade of activity passed in front of him. He didn't roll over, as most infants eventually do, until he was six months old. He didn't crawl until he was almost one; he didn't walk for another five months after that. Did I worry? No. He was just moving at his own pace, I figured. He was meeting the developmental milestones--just not as quickly as other kids do. But he was my fourth child. He got lots of parental and sibling attention. I supposed that he just didn't see much need to change things up too quickly.

But once he got up and walked, my docile, quiet baby vanished and every waking, toddling moment was soon laced with some form of chaos: he pulled cereal boxes from the pantry to scatter millions of little oat circles across the kitchen floor; he dumped cups full of water or other accessible liquids (notably, my Diet Coke) into lakes and oceans on the carpet; he removed his poopy diapers to create fresco artwork on the walls and floor; he emptied full bottles of shampoo or dish soap onto beds or down the bathtub drain. Did I worry? No. I figured he was just an active kid. Maybe he was making up for lost time.

He was four when I sent him to preschool. He couldn't sit still, couldn't interact with other children in appropriate ways, couldn't control himself from hitting, kicking, or spitting on others, and often ran out of the classroom either into the hallway or else out the door into the parking lot when he spotted an opportunity (little jail breaker!). Did I worry? No. I figured he had ADHD, and took him to the doctor for a prescription that actually helped a lot.

I didn't worry when he started kindergarten, either, and couldn't tolerate sharing a table with other children. He never played with other kids on the playground. He often still pinched, pushed, and hit his classmates, but I figured that his meds needed some adjusting.

And then came Picture Day, which happened first thing in the morning for the kindergarten class. By 9:00 a.m., his whole class had smiled and said "cheese" for the strange guy with the rubber chicken. By 9:30, the school principal called me to say that Ben's behavior had escalated to a point where they could no longer keep him in school. I picked him up, drove him home, and finally started to worry--particularly after I began to cry and Ben punched me and said, "You're a big crybaby. You're a stupid crybaby!"

We've come a long way since Picture Day last year. With a diagnosis and a treatment plan in place, Ben's making some slow but certain progress. So when yesterday--Picture Day--rolled around again, I thought for just a moment about sending a note to his teacher to warn her that Ben might have a tough day. And then I changed my mind. It seemed like he was having a good morning, so I decided not to worry about it after all. Still, I wasn't entirely surprised when the principal called me at lunch time to report that Ben was sitting there in his office with him, after spending lunch spitting on, kicking, and pushing other children.

I thought a lot last night about what Picture Day means to an autistic child, and realized that it must almost feel like a horrid personal violation to him. Ben doesn't make eye contact with anyone--not even me, and I'm his closest connection in the world. Imagine if every time you were asked to look someone in the eye, your brain began shooting off electrons in a frenzy that would rival the finale of a 4th of July fireworks show. I think that's what it's like for Ben when he's asked to make interpersonal connections. Yet on Picture Day, he's put on a stool--the center of attention--and commanded to look up, look here, smile, and say magical, grin-inducing words. His over-firing brain can't have much left by the time that ordeal is over. So of course, Picture Day is almost impossibly hard for him to survive without some level of emotional overload.

Is it worth it? Do I continue to force him through that level of over-stimulation every single year for the rest of his educational career? I love his school pictures, and I cherish the memories that each picture inspires. But what about him? I think I have to remember that on Picture Day, Ben will always need a chance to regain some kind of balance and quiet in his own mind once the photo has been taken.

The fact is, Ben needs me to worry a little more about Picture Day.

Doing This Stuff...

A couple nights ago, I sat down at the kitchen table next to Ben after having been gone all afternoon and evening with Izzy to her Nutcracker rehearsal in Salt Lake. Apparently, Ben and his brothers had been saving up questions with which to bombard me upon my return. Within moments of sitting down, the kids began competing for my attention, all talking at the same time, each word a little louder than the last, in an effort to be heard first. It was chaotic, and too much for Ben. So he communicated a different way: he pulled back his fist and punched me in the back as hard as he could. Chris (my dh) jumped up, picked up Ben, and hustled him upstairs to our bedroom, where he tucked him into our bed until Ben could calm down and fall asleep. I listened as Ben screamed and yelled, and when he finally quieted down, I went upstairs to talk to him.

I crawled up next to him on the bed and said, "Ben, it really hurt me when you hit me." He replied, "I don't care if it hurt you. Because you wouldn't listen to me." I explained that hitting is not the way to get attention, even if everyone else is talking and yelling. He responded "Oh," and then looked blankly toward the ceiling. That's usually my cue that he's done talking. But I wanted to finish our conversation with some praise so I added, "Ben, I'm really proud of you right now, because you are calm, and you are using your words, and being really good." He looked at me and said in a very matter-of-fact tone, "Well, I don't want to be good. I'm only doing this stuff so I don't be in trouble."

I give him double-points for being honest. But I wonder: is Ben's behavior, good and bad, always so utilitarian in nature? He had a terrific week at school last week; he earned every sticker he could on his "good behavior" chart and only got "Good Day!" and smiley faces in the comments section of the chart. Truthfully, I feared for a couple days that Ben had actually stolen his teacher's stickers and given himself such high praise, but I don't think he has mastered a perfect forgery of her handwriting. Yet.

On the topic of school, Ben is struggling with spelling tests. Such a verbal skill: hear a word, process the sounds mentally, convert them to their letter-referents, and then transcribe them onto paper. The first week, I tried studying spelling words with Ben the same way I've always done it with all my other kids: I say the word; Ben repeats the letters--an entirely verbal activity. I thought it worked well, until he missed every word on the test. And then the little light-bulb clicked on over my head (well, first it swung down and cracked me across the skull with a little "Duh!" sound). Ben can't process verbal information very well. His strength is in tactile, hands-on skills. So the next week, I spent one night having him write the words down on paper. The next night, we sat on the couch with imaginary chalk boards in front of us. I said a word, and then Ben "wrote" the word, letter by letter, on his chalk board. It became quite an elaborate activity--at least in Ben's creative mind. He was pulling boards down, sliding them over, scratching erasers over them, trading boards with me if mine seemed bigger than his, and at the end of the activity he carefully folded up our imaginary boards and tucked them under the coffee table. The next day when I suggested we use our imaginary boards to practice again, he ran upstairs to the living room, made a series of banging and clacking sounds, and returned with the invisible boards tucked under his arm. He hung each (mine and his) on imaginary hooks over our heads, and we went through the spelling list again. That week, he only missed one word on his test. Sweetest are the small victories, I think.

But most importantly, I finally started to get it into my own head that Ben's world operates by "doing"--not "saying." He disassembles his toys, screw by screw, as his way of deriving joy from them. His favorite television show is "How It's Made"--a show on the Science Channel which details the mechanical process of creating various objects such as radios, gloves, hockey helmets, and compact discs. He can watch several episodes of that show in a single sitting and never get bored. By contrast, I am a student and teacher of English; I love and live in a world of words and language. I struggle to understand Ben's daily experiences as clusters of motion and action, rather than verbal expression. And yet, whether he's behaving or not, and whether he wants praise or just wants to avoid getting in trouble, Ben is "doing this stuff" because that's how his mind makes sense of his environment: Doing, doing, doing.

Feewing Nuffing

Last weekend as part of the weekly "give dead trees to those you love" ritual, wherein all classwork completed during the week is dragged home and piled on my bed, Ben handed me a "feelings" worksheet that his classmates had completed. I say "his classmates completed" because Ben's own copy was blank.

The assignment had been to draw a picture of himself looking "happy" in the top box on the page, and then in the bottom box, to draw himself feeling any other emotion that he might have also felt that day. Suggestions beneath the box included sad, anxious, embarrassed, disappointed, excited, etc. I took the bait. "Ben," I asked, "why didn't you draw any picture on this worksheet?" He shrugged. "I don't know." Undeterred, I tried again: "Ben, how about the bottom box? What kinds of feelings did you have that you could draw here?" Another shrug. Now, the definition of insanity is repeating the same action while expecting a different result. I'm obviously insane. "Ben," I asked a third time, "Didn't you feel happy, or maybe you were worried about your spelling test? Or something?"

That was enough for Ben. He looked away and shouted, "I was feewing nuffing!"

Yes, he'll work on "l" and "th" sounds with the speech therapist this year. More troubling to me is that this isn't the first time he has said that he "feews nuffing." A couple weeks ago, when he was having trouble with impulsively hitting his peers, I tried to understand what motivated that behavior. I asked him then what he was feeling when he hit his classmates: "Nuffing." I thought he might just need some words, so I offered some. "Ben, were you feeling busy inside, or all crazy inside, and it just made you hit somebody?" Another shout: "No! I don't feew nuffing."

Is it possible that he really doesn't feel anything? I don't think so. I've seen him when he's sad. I've seen him when he's excited. I've seen him when he's worried. The emotion is in his eyes and in his voice. He feels things. I think it's just really hard for him to process the emotion, analyze what it is, and give a name to it. That's a complex cognitive process--many "normal" adults struggle sometimes to identify what they're feeling at any given moment. I don't know what is fair to expect from him, and what is beyond the reach of any 6-year-old child.

I wish I knew how to help him make those connections. But I don't. His IEP goal, which he's working on with the school psychologist, is to be able to identify and express his emotions. But so far, when I ask him what he does when he visits Mr. Gallacher, he says, "We just watched a movie." When I press him to find out what the movie was about, I get the perfunctory "I don't know" response. I guess that means "nuffing."

We were feeling hopeful that Ben was connecting with some of his peers when he was successfully interacting with his math partner for a week or two. As of last week, however, he regularly hits his math partner, because the partner "doesn't obey the rules." Now, I hate it when people don't follow the rules, too. I don't need to hit them (well, let's be honest--sometimes I'd like to hit the guy who drives too slow in the left lane on the freeway), but I guess Ben doesn't have any other way yet to express his frustration. His teacher indicated yesterday that she was going to switch him to a new partner. I'm hoping it's a really rule-bound kid, for his own safety. After all, Ben may be feewing nuffing, but he's got a heck of a right hook.

Making Me Sick!

A few days ago, Ben rushed upstairs from the family room to where I was standing in the kitchen. He said, "Mom, come here--quick!" with the same urgency that he might have said, "The basement is flooding," or "There's a giant spider crawling up my leg!" As I followed him back down the stairs I asked him what was upsetting him. He replied, "Two pictures on the wall are crooked and it's making me sick!" Sure enough, two pictures in the family room were hanging slightly off-center (well, only one was really off, but it made the other one look crooked, too), and he was feeling anxious and unsettled by the lack of symmetry and order.

Odd, of course, that a child who demands such order still creates such chaos in our home. I am sure that if I could keep our house in spotless, everything-in-its-place condition, he might experience less internal anxiety and confusion. But truly, I cannot catch up with him. I have never been able to keep up with him. When he was a toddler, the schedule typically went something like this: (1:15 p.m.) I catch Ben dumping some kind of shampoo / toothpaste / maple syrup concoction on his brother's bed, and while I am mopping that up, (1:19 p.m.) Ben is in the living room coloring on the sofa with ball point pens. When I move to clean the sofa (1:34 p.m.) he scatters the day's mail, newspaper, and any other papers left on the table all over the floor while heading to the family room to pour cups of water onto the carpet. When I finally get to that mess (1:47 p.m.), he's already back upstairs peeling paint off the walls or shorting out the entire top floor of the house with a spoon inserted into an electrical outlet (HOW he didn't get hurt while blacking out the upstairs, I still can't understand). I wish I could say that I'm exaggerating a bit for dramatic effect, but those of you who ever spent much time with us during those years know that this is exactly how things went, from the time Ben woke up every morning until the time he went to bed at night. It was overwhelming.

Is it better now that he's six? Sometimes. There is less incidence of shampoo and syrup joining together in unlikely combinations, and after I explained to Ben that pouring water onto the carpet was damaging our house (leading to an unexpected outburst of sadness and tears), he hasn't done so much of that lately. But the paint on the walls seems to peel off far too easily to resist (there must be something therapeutic in that motion), and every paper stacked on a table seems to demand relocation to the floor. Toys are dragged out from every room to be stacked, combined, and aligned or else dismantled via screwdriver and hammer (rarely are toys played with like actual toys), but they never seem to make their way back to their original locations. Folding clothes is a skill he hasn't learned yet (yes, we've tried. Some autistic kids aren't even dressing themselves yet at age six, so I think we're actually advanced on the occupational tasks), so clothes are strewn all over the house--whenever he gets hot, or can't stand the feeling of the fabric on his skin, he peels them off wherever he is and drops them on the floor. On a positive note, when given freshly folded clothes to put away, they do go into drawers. Well, drawer. Singular. Everything in one drawer. But I'll take it.

So you're wondering why I don't make him clean up after himself? Why don't I teach him to be tidy? Believe me, I try--continually we work on cleaning skills. But the task is akin to teaching apple trees to grow oranges. While I try to get him to put puzzle pieces away, he blows in my face and asks if we have more otter pops. I refocus him on the puzzle pieces, but he needs to know why some people have secret rooms in their houses. I make one more effort to focus on the puzzle pieces, but he's wondering why Utah doesn't have potatoes (translation: "tornadoes") like other places. Cleaning is a complex series of tasks that his mind simply cannot process. At least, not all at once. If I can find ways to break his jobs into one or two very simple steps, he does better...but not all cleaning jobs lend themselves to that kind of patience (mine) or focus (his). We're working on it...

By way of school update, the speech therapist finished all her testing and the results were actually hopeful. In most social contexts, Ben can understand what's going on at least at an average level (sometimes on the low side of average, but still average). That means that Ben has the ability to interact with his environment in appropriate ways. It doesn't mean he has any interest in doing it, but having the skills is a big chunk of the battle. Aside from that, his speech is problematic--there are six or seven letters that he cannot pronounce in any position (beginning, medial, or final), which is why we often think he's speaking Mandarin, Klingon, or a unique dialect of Manda-Klingon.

But here's the big news: drum roll... We finally have an IEP in place!

On his current medication, Ben has been having very good days at school. His impulsive moments (randomly hitting or pushing another child) are limited to once or twice a week, and for the most part he's getting his work done in school...sort of. So his current IEP doesn't include much of a behavioral or academic component right now. If we have to modify it to add some behavioral or academic strategies down the line, we will. For now, he's working with the speech therapist twice a week on articulation, and once a week he's pulled out by the school psychologist to work on social skills. His IEP goals in that area include learning to identify his own feelings, and then express those feelings in appropriate ways. How interesting it would be to see that happen. He's also supposed to learn how to ask other children to play with him, and then how to play in socially acceptable ways. Again, he might learn the skills, but he won't necessarily want to use them.

So that's where we are this week, and that's where I'll leave off. After all, there are papers and toys all over the floor, and I need to go clean them up--they're making me a little bit sick, too.

Fruit Blood

Yesterday, Ben bit into a plum, gasped, and cried out, "Oh no! Fruit blood!" He was genuinely disturbed to think that his plum (which he always just calls 'fruit') might have been injured when he bit into it. Or maybe he was just disgusted that said fruit had blood.

I'd like to climb inside Ben's brain for a day or two and see how it feels to be him. There are times when I watch him and I'm overcome with grief and sadness--until I look a little more closely and recognize that my values, my joys, my comforts are not his. His peace comes in different ways. For example, last summer I took Joey to one of his baseball games and Ben was with me. Joey's was the first game of the day, and we had arrived especially early to the ball field. No other parents or spectators had yet arrived. Joey ran off with his team to some remote spot to warm up, and Ben hopped out of the car and headed toward the still-deserted bleachers. I was reading my book in the car, which happened to be parked just beyond the outfield, looking straight toward those bleachers.

When I looked up, I saw Ben sitting in the center of the top bench of the bleachers, silhouetted in the setting sun behind him, completely alone, and my eyes filled with tears. It was such a poignant scene--my little blond-headed boy, all alone, staring at an empty baseball field. I felt an overwhelming sense of isolation and sadness for him.

But then I looked closer, and my perspective suddenly shifted. I realized that Ben felt neither alone nor isolated. Sitting there in the summer quiet with hands folded on his lap, the sun warming his back, the breeze brushing his face, he was entirely peaceful. And that's when I realized that my own experience is not an accurate way to measure his. Where I might feel lonely, he feels safe. Where I might feel rejected, he feels content.

But all things have their opposite, and I'm trying to keep a perspective on that as well. So, in busy, high-energy situations where I might feel energized, Ben feels confused and chaotic. Where I might feel curious to explore a new environment, Ben feels overwhelmed.

I find that if I can remember how different Ben's experience is from mine, even in identical circumstances, it makes it easier to understand his behaviors. I've been reading a great book called "Early Intervention & Autism" (James Ball), and Ball says that parents of autistic children should hang a sign on their wall that reads: "Behavior is communication. Behavior is communication. Behavior is communication. Get the point?" I'm slowly getting the point.

The trick is learning to translate what the behavior is trying to communicate. When Ben melts down and all I can do is try to hold him while he scratches, bites, kicks, and spits on me, I desperately need to know what he's trying to say. Maybe someday I'll become a master translator. For now, it's one melt down at a time and we don't always communicate very well at all.

The speech therapist at the school called me today and reported that the testing is all complete. She didn't give me any indication of the results, but we've set up a meeting for next Wednesday to discuss them. And THEN we'll set up an IEP meeting. In the meantime, Ben's been doing well in school. Generally focused, generally able to control his impulsivity. Not putting much effort into his assignments yet, but...we'll get there. We can only handle so much fruit blood at a time.

Roller Coaster to Tightrope

Last week was a roller coaster of behavior and emotion--from some of the worst days Ben has ever had (see my last post), to some of his best as the week finished out. The catalyst for such dramatic change was pharmaceutical in nature--I finally followed my gut, made an executive, maternal decision, and pulled Ben off his then-current medicine in favor of the ADHD medication he was taking last year. And wonderfully, miracles do happen.

I made this switch on Wednesday morning, after Tuesday left both me and Ben's teacher wondering if Ben was going to be able to succeed in a mainstream classroom. Around 10:30 Wednesday morning I got a short email from Ben's teacher that said he was working well, staying on task, and had not hit, kicked, or spit on another person yet. That afternoon I got another short note simply stating, "So far, so good!!" And as the pinnacle of the day, when I went to his classroom to pick him up after school, his teacher said that the change in Ben was "night and day." With tears in her eyes, she said, "He can learn if he's like this. He can do it."

There's always a catch, though, and here it is: The reason (well, one of them) we pulled Ben off the Adderall in the first place is because it doesn't always work very consistently. It may be a week, or a month, or maybe more, but sooner or later, it will stop working. And then we'll have to start playing with his dosages, shifting him up and up until he can't take anything higher. In the meantime, he'll have good days and bad days, and days that start good but go bad before they're over... And then it will be time to try a "cousin" medicine, hopefully getting the same good result that we had with the Adderall. Again, after a while that medication will stop working, and we'll have to adjust, and adjust, and eventually switch back... So maybe we've exited the roller coaster, but making this medication work effectively will be a tightrope act. Less action; same knot in my stomach.

Progress is being made toward getting an IEP in place. The speech therapist did some testing last week, and then called me to say that she has a bit more to do--hopefully this week. The principal also called me to say that he's asking her to make Ben her top priority (problem is, she has to conduct hearing screenings at a couple schools this week, so her schedule's tight). On his initial testing though, Ben demonstrated a pretty clear deficit in understanding emotional signals. He could identify when a picture depicted someone who was happy (smiling, laughing, etc.) But anything that wasn't happy was relegated to the category of "sad" for Ben. He couldn't identify angry, embarrassed, surprised, etc. All those were simply "sad." Hopefully the rest of the testing will be done this week and an IEP will follow shortly.

Was Annie Right?

Little red-headed Annie sings that the sun will come out tomorrow. I hope she's right, because there's a heck of a storm blowing today.

Ben's "great" first day has rapidly descended into disaster. On day two, Friday, his teacher walked him out to the car and said that from lunch on, Ben couldn't seem to stop punching and kicking other kids, completely unprovoked. We wondered if the stimulation of the lunch room was too much for him. Yesterday, Monday, I sent a behavior chart to school, offering Ben the chance to earn stickers for good behavior and later convert those stickers into prizes from me. He came home with three stickers, and a small note saying that he had some trouble with hitting other kids, particularly in the afternoon, but generally he was OK.

Today Ben said that he forgot to take his chart to school (he didn't; it was in his backpack, just where I showed him), but he announced when he got into the car after school that he had a "bad" day. When I took him to the library this afternoon he proved it by clawing gouges into my arms, kicking bruises onto my legs, and pushing dozens of books off the shelves while I tried to hold him. And an hour ago I received an email from his teacher, who wanted to know what to do. As if I might know.

She is alone in a classroom full--FULL--of six-year-olds, and she simply doesn't have the time to devote to Ben alone. Today was apparently the worst day yet: hitting, kicking, spitting until she feared for the safety of his classmates. He needs one-on-one help; he needs people who can take him out of the classroom when he falls apart and help him get calmed and centered again. He needs more than his teacher can offer, and I don't know what to do about that.

I'm wavering between crying and punching something. I'm angry that we're a week into school, and despite all my insistence that Ben have an IEP in place before school began, we are still waiting for the speech therapist to come to the school and do her testing so that her parts of the plan can be included. In the meantime, he's falling fast, and no one seems to be able to catch him. And I'm starting to question whether he's going to be able to succeed in a mainstream classroom.

Tomorrow, I'm rebelling against the psychiatrist who put Ben on new meds two weeks ago. I told him that I thought they were making Ben more difficult and impulsive than ever; he warned me that it will take a long time to find a medication, or combination of medications, that will work for Ben. But, guess what, doc? Ben doesn't have a lot of time. He doesn't even have a little time. So, even though you don't want to, I'm taking Ben off your meds and putting him back on the ADHD meds that he took last year. Were they perfect? No. But they worked far better than what he's on now, and we're in a crisis. We've only been in school for four days, and we're already in a crisis. So I'm taking charge. Next summer, we'll explore other options.

Tomorrow, I'm calling the school and making sure that Ben's testing is complete this week, and that his IEP is scheduled for next week. Tomorrow, I'm calling the school district and perhaps the state to find out exactly what resources are available if I'm willing to make enough noise to get them. Tomorrow, I'm calling an end to the storm. I sure hope Annie was right, because tomorrow, I need the sun to come out again. And so does Ben. Tomorrow.

Funny and Crazy!

It's official--the school year has begun. I spent the entire day with my phone in my hand and my stomach in my throat, wondering how Ben was going to do and whether I was going to get a call from the school.

I had another meeting with the school psychologist, the principal, and Ben's teacher earlier this week. It was the first time I'd met with his teacher, and so after the psychologist told her that Ben was going to have an IEP for Autism, I started to explain to her some of the struggles that Ben had last year (and the year before). Before I'd gotten through my list, this wonderful teacher stopped me and said, "Now, I don't know if you already know this, but my second son [who is now grown] has Asperger's [a form of Autism, for those of you who don't know]." She continued, "So, I know that every child is unique and Ben's situation won't be exactly like my son's, but I just wanted you to know that I understand." I could have started crying right there. Fortunately, I'm not much of a crier, but you have to imagine the wave of relief that rolled over me when I realized that she's not going to think Ben is just a strange, difficult, "bad" little boy. Better yet, she understands that when he's acting out, he's just trying to communicate that he's in overload mode. Over the course of about 1/2 hour, we strategized all kinds of interventions that we think will help Ben when he's struggling, and as the meeting ended, she encouraged me to bring Ben in early to the school Open House the next day, so she could show him around without the extra chaos of other parents and children.

At the Open House, Ben took to her like chocolate to milk--he immediately asked her to show him all the things in the room that she could. She had the lights at about 3/4 brightness in the room so that the atmosphere was calm. She had created a special spot on the story rug for him that would allow him to have some space away from the other kids if he needed it during rug time; she had his desk set up at the end of the row, nearest her desk, and away from all but one other child on his left--a child she knew would be relatively easy to get along with. She showed him how he can slide his desk to another spot away from the other kids if he starts to feel upset by them. She showed him his special spot to stand (on the top step, in front of the other kids) when lining up in the morning after recess. He heard every word and it was awesome.

And then we went down to my other son Joey's classroom. Bright florescent lights, echoing walls, and loads of other people. Ben sat in the corner with some blocks for about 5 minutes, and then he began throwing chairs onto their backs, slapping strangers on their bottoms and laughing, spinning the teacher's big desk chair, pushing papers off her desk, blowing and spitting in my face when I tried to hold him--total, complete meltdown. And all my euphoria and hopefulness that we'd make it through this year vanished like dew from a too-warmed lawn.

And then it was today. I made sure Ben got his meds, which sometimes work and sometimes don't, plenty early this morning. I got Ben dressed and made his breakfast--the wrong breakfast, he yelled--and then I made the right breakfast (some battles are not worth fighting--not on the first day of school). He shouldered his backpack and dad drove them to school. And I waited, and waited, and waited... and when the school's number showed up on my caller ID about an hour before the school day ended, my heart sank. False alarm--the principal needed some help with the website. To his knowledge, Ben was doing fine.

My dh Chris (who doesn't work on Thursdays) and I drove over to the school and waited for Ben outside when the final bell rang. He appeared, ran into my arms, and exclaimed, "My teacher is funny and crazy!" We went inside and his teacher confirmed that Ben had a great day.

One down, too many to count to go.

Starting Somewhere

Well, this is where it begins--for this blog, anyway! My son Ben was diagnosed with Autism about a month ago. It was a late diagnosis, really; he's six years old and moving into first grade. We had originally thought he had a serious ADHD problem when every day of preschool included some incident of running out of the classroom into the parking lot or hall, punching another child in the nose, and/or any number of assorted problem behaviors. Unpleasant mothers of other preschool children glared unkindly at me every day, wondering what kind of mother I was to be raising such a terrible child. I wished plagues of locusts upon those "perfect" moms with their "perfect" little children.

Last year, kindergarten, we noticed that Ben couldn't stand to have other kids in his "space." He didn't play with the other children at recess, couldn't tolerate changes to the normal school routine (for example, picture day or an assembly), and continued to exhibit impulsive, destructive behaviors. We started looking at the possibility of an autism spectrum disorder by mid-year, thinking that since Ben had pretty good language skills, he might be facing Asperger's Disorder. By the end of kindergarten, we had gotten the school psychologist involved who completed his testing on the very last day of school, and preliminary results supported our suspicions.

This summer we finally sought out the help of a Child and Adolescent Psychiatrist who, after an extensive clinical interview, told us that Ben met 9 of the 12 DSM-IV criteria for Autism (6 are necessary for the diagnosis). And there it is. Our son is Autistic.

Most people are given this news when their child is two or three years old. The "system" failed us, I guess. Ben missed all his developmental milestones, but our pediatricians just said, "Well, he's a little behind, but some kids just do things at their own pace." The preschool teacher might have suggested that we ask our pediatrician about autism, but state laws prohibited her from saying anything about Ben having a problem of any kind. And I thought Autism meant a child who spends all day quietly rocking, never speaking a word, resisting all human contact.

Turns out, the faces of Autism are as varied as stars in the sky. Some kids lack all language; others face serious social deficits but never seem to stop talking. Some have academic and intellectual problems; others excel in certain areas beyond what any of their peers can do. Ben speaks--constantly--but he isn't necessarily communicating. He lacks an ability to connect with others. He needs routine and order to feel comfortable, and discomfort is manifested as impulsivity.

So here comes first grade. I've been meeting with the "team" at school to get an IEP in place, and the psychiatrist has put Ben on a medication that seems to control his impulsivity. It also has the unfortunate side-effect of putting him to sleep, which obviously won't work in school. And school starts on Thursday. Today is Monday.

This blog is partly for me--to mark progress, remember milestones, and celebrate Ben for the unique person that he is. It is also for you, whoever you are. Maybe you are one of my relatives, and you want to keep track of Ben's progress. Maybe you are a friend and you want to see what's new in our continuing saga. Maybe you don't know me at all, and either have an Autistic child or are just curious about what Autism looks like. Whoever you are, welcome. You keep reading; I'll keep writing, and we'll just take this "adventure" one day at a time.