Doors and Damage Control

The poets, dreamers, and optimists in general say that when one door closes, another opens. Maybe this is true, but sometimes a closed door isn't about new beginnings. Sometimes it just means, "Stay out. Don't go in there. Fair warning."

A few nights ago, Ben had a meltdown about something--could have been anything, really; I don't recall what started the incident--and to express his frustration he began opening and then slamming shut his bedroom door. Over, and over, and over: slam... slam... slam... slam... slam... slam... You get the idea. Most kids do this a few times and then move on to something else. Autistic kids (mine, anyway...) do this for hours if left to their own devices, until you feel you might spontaneously combust. In response to the relentless slamming, my husband did what he's done with all the kids when they behave inappropriately in their rooms: he went upstairs to Ben's room, extracted the pins from the door hinges, and removed the door entirely. He leaned it up against the wall outside Ben's room and then glanced at the disaster Ben had created behind it: an enormous tub of legos had been dumped upside down, clothes were pulled from the dresser and flung about the room, and a few other books and toys had been strewn across the top. As disasters go, this actually wasn't one of Ben's worst.

Until the door was removed. At that point Ben truly lost it, and in an instant was clearing off the top of his dresser by the armful, sweeping every single toy and tool and tchotchke onto the floor while intermittently screaming and then breathing like a Lamaze coach. Chris pulled Ben away and moved him into the doorless doorway just before Ben got to the tv and blueray player that sits on the far end of the dresser. Being physically touched and relocated did not go well with Ben either, and so he began swinging his fists and kicking out at anyone and anything nearby. There was no reaching him at that point--for the time being, he was no longer in the room with us.

The commotion brought my 16-year-old son Zach up from the basement, and as soon as Zach heard Ben's breathing pattern and saw his behaviors, he jumped into action. Zach quickly and very quietly wrapped his arms around Ben, drew him into the hall, slunk down against the wall with him, and began whispering: "Shhh. It's ok Ben. Shhh. It's ok. It's ok. Shhh." Eventually Ben stopped struggling enough that Zach could start talking to him about a computer game they like to play together sometimes, and within a few minutes Ben sighed deeply, laid his head back against Zach's shoulder and the storm was over.

I wish I were a painter, so I could capture that moment on canvas: a narrow, half-lit hallway, a teenage boy with a lost, struggling child in his arms, sitting next to a crooked door that leans askew against the wall--a door that is closed and open at the same time.

Both Zach and my 14-year-old daughter Izzy (and sometimes even my 11-year-old son Joey) have learned now that when Ben melts down, the only solution is a quiet and gentle one. As much as Ben's tantrums make us feel upset, and scared, and frustrated, and angry (especially when the meltdown involves punching and spitting on us, as it often does), the only way to bring Ben back is to do exactly what Zach did the other night. What I feel most grateful for is that my older kids have joined in on this solution. Because, when Ben is upset at me or my husband, we can no longer calm him--he simply won't respond to us. If we try to touch him, or speak to him, he reacts violently. But in these situations, he will often now (this is a relatively new development) allow one of his older siblings to draw him close and help bring him back.

Watching my older children as they learn to take care of Ben in moments of crisis is actually quite miraculous, and the journey to this place has been a long one. For many years, the older kids haven't understood why the rules seem to be different for Ben, and why he doesn't receive the same consequences and responses to his behaviors that they get. It's taken a long time for them to begin to see that as much as we all want Ben to be the same, he just isn't. And as a parent I feel a great deal of love and respect for my older children as they are learning to embrace their youngest brother in spite of his differences and his challenges.

Speaking of challenges, Christmas shopping for Ben this year has been one. Most parents (including me when I'm shopping for the older kids) ask themselves questions like, "Will my child like this present? Will he/she have fun with this present? Will he/she use this present for more than a couple days?" These are normal questions that normal parents of normal kids always ask before buying gifts.

This year, as I shop for Ben, I'm asking different questions:

"Will this present break when Ben gets angry and throws it down the stairs?" "Will someone be injured when Ben hurls this present at them?" "Will this be a present that helps Ben feel calm and focused, or will it agitate and upset him?" My questions as I shop for Ben are only partially about whether he will enjoy the things I get him, and are equally about how much damage control I will need to put into place when the inevitable meltdowns occur.

Autism is a door askew. Would I want to close it entirely? I don't think so. We all have challenges, and we all face various trials in our lives. Ben is no exception. His autism brings a fair share of complexity to our family, but at the same time, it brings wonderful things like unity, and love, and patience, and understanding that in some ways make our family unique. Maybe the door doesn't open and close at all. Maybe it leans against a wall, and we with it, while we hold Ben in our arms and whisper quietly, "Shhh. It's ok. Shhh." Maybe we could all use a door like that.

Just Emotion That's Taking Me Over...

I watched a movie this week called My Name is Khan. It's a foreign film following the life of the fictional character Khan, an Indian man with Asperger's. One of the fascinating aspects of the movie was Khan's ways of dealing with emotions. At one point he wrote in a journal that although he could not express emotions in language, he could write his feelings on a page, and in another scene in the movie he broke down and cried after being overwhelmed by the death of his son and his separation from his wife (another fascinating element of the movie--that he was able to court and marry a woman without ever verbally or physically expressing love or affection toward her in traditional ways).

Anyway, these explorations of feeling and expressing emotion brought to mind an experience that we had with Ben a few weeks ago. Ben had gone out into the backyard to play, when suddenly he came rushing back into the house, gulping in air while tears spilled down his cheeks. I asked him what happened, and he said, "Stockton [our oversized moose of a Labrador retriever] just jumped up on me and I hate when he jumps on me!"

I said, "Oh Ben--you're sad!" He immediately retorted, "No I'm not!" I then pointed out that he was crying. He quickly yelled, "I am not crying! My eyes just got all wet like this for no reason at all!"

No amount of negotiating could help him understand that when his eyes get all wet, it's because he's feeling an emotion that overcomes him in some way. And this isn't the first time something like this has happened. At other times, too, he has begun to cry over something and then exclaimed, "I hate when my eyes get all wet like this!" He recognizes the physical manifestation of his emotion, but he can't seem to associate an underlying feeling with it.

I'm wondering how this ties into empathy, and the challenges that Ben has both in identifying what other people might be feeling and also in responding empathetically. When Ben's great-grandfather and his grandfather both died within two weeks of each other last year, Ben's only response upon hearing that each had died was, "He did? Oh. Well at least we'll see him again when we go to heaven." That was it. He never cried, or seemed sad, or understood why people around him were crying. He did ask me during his grandpa's funeral if people were feeling sad, but when I told him they were he shrugged and said, "Anyway we'll just see him again in heaven so it isn't sad."

I went on a cruise a couple months ago, leaving my husband with the kids so my sister and I could enjoy a getaway together. Ben never cried, but he did kick out the plantation shutters in his room the first night I was gone, so I know he missed me. About halfway through the cruise, my husband was writing me an email [mostly to tell me about the new blinds he put up in Ben's window] and he asked Ben if he wanted to include a little message of his own. Ben said, "Um...sure." My husband asked him what he would like to say to me, and Ben replied, "Um...I don't know. Surprise me."


Is such emotional detachment a blessing, or a curse? I wonder often whether Ben will ever become someone who can understand what others are feeling, and want to have such deep connections with another human being that he seeks fulfilling relationships. Is marriage in his future? Will he ever have a girlfriend? Will he ever go to a school dance, or to Prom?

I find that I want these things for him--these impossible things--and my heart aches when I consider that he may never have them. At the same time, maybe he won't miss them. I just don't ever want the day to come when he feels lonely, and doesn't know what to do about it, and suddenly his eyes get all wet, for no reason at all. How do I protect him from that?

A Mile in My Shoes

I've recently become a fan of the television show Parenthood, which explores the interrelationships of three generations within a family. Most intriguing to me in that show is the storyline of "Max," a 10-year-old recently diagnosed with Asperger's Syndrome, and of the efforts of his immediate and extended family to understand and deal with Max's special needs.

This week on Parenthood, the family patriarch Zeke took his grandson Max on an overnight camping trip. Zeke had expected that the camping trip would be just like every other outing he had ever taken with his sons and other grandsons; however, as any parent of a child on the spectrum has already surmised, things didn't go very smoothly. Zeke eventually found himself frantically dialing his son's (Max's father's) cell phone for advice and help as Max kicked at the dirt and repeatedly screamed, "I want to go home! I want to go home"!

The next morning, Zeke returned home with Max. In that poignant scene, Max went inside with his mother while Zeke stayed outside and spoke to his son about his camping experience with Max. He commented to his son that before the camping trip, he hadn't really understood what it was like for his son and daughter-in-law as they struggled every day to help Max feel safe and connected, but having had this experience, he had a whole new appreciation for what it was like to raise an autistic child.

I suddenly found myself welling with emotion, longing to have friends or family members in my own life who understand what it's like--every day, every hour--to raise a child with autism.

A week or two ago, I thought I'd motivate Ben and his older brother to behave by offering them the chance to go to Walmart and pick out a video game together. They did well throughout the day with the expectations I had set, and so we went to the store. As I should have predicted, though, the boys could not agree on a video game, and as the tension outside the glass video case became palpable, I eventually chose one myself that I thought they could both enjoy, and herded them toward the checkout. Ben began to shout, "No! You said we could pick the game! You said we could choose, but you chose the game! But you said we could choose! That's not fair, mom! It's not fair!" And suddenly we were in a meltdown of Vesuvian proportions. Ben went after his brother first, pushing, punching, kicking. Then he started spitting at him, and then at me, still screaming and flailing.

What was most upsetting to me during those eons that it took me to get the game purchased and get Ben outside to the car wasn't the meltdown itself--I've been through hundreds of those. What hurt was the looks of the other people in the store. They stared at Ben in shock, and then turned their glares to me. From every gaping mouth I could almost hear them whisper, "What kind of mother raises a child like that?" I could see the words "Failure--Terrible--Shameful" etched across every judgmental face. I just wanted to scream, "He's autistic! I'm doing the best I can! Stop judging me!"

But of course, that's not reasonable. All I could do was finish my business and flee as quickly as possible. I desperately needed to find just one person who understood, so I went home and posted an update on Facebook about my experience. When the mother of another autistic child posted, "Been there, done that" on my profile, I was overcome with gratitude--four simple words that assured me that I was not alone, and that someone else understood.

I am surrounded by family and friends who support me, and who love me and my family. But most of them don't get it--no matter how much they want to, or how willing they are to commiserate with me when days are difficult. Because, even when they know on a cognitive level that I cannot work with Ben like I do with my other kids, they still can't mask the look that eases onto their faces when Ben walks naked through the living room in front of visitors, or when he begins a litany of swearing and spitting, and I can see in their eyes that they think I am a bit too permissive, or that I'm not disciplining appropriately. They don't mean to feel that way, I know. But they cannot understand what every day is like, and how every moment I am doing everything in my power to unlock the mysteries of my son's mind enough that I can engage with him in some kind of meaningful way.

Ben is an enormous blessing in our family's life. I adore him, and admire him, and appreciate every quirky, unexpected insight that he shares with us. Nevertheless, during those meltdown moments, I would not wish his challenges on any set of parents. Most days, parenting an autistic child is a lonely, uncharted journey. And sometimes I think I'd give almost anything to have someone--anyone--walk a mile in my shoes, and finally understand the challenges of raising a child on the autism spectrum.

Crying over Spilt Milk

I really blew it tonight.

I thought that some cookies and milk before bed sounded like a nice snack for the kids, so I baked up a batch of chocolate chunk cookies and poured cold milk into paper cups for each of my four children. As I distributed treats to the older kids, Ben retrieved a giant tumbler from the cupboard and poured himself some milk--somewhere around two quarts of it. I knew Ben would not only not drink that much milk, but that he'd most likely spill it. So I took the cup from him, poured the contents back into the milk container, and then handed him a paper cup of milk as I had given to the other children.

And he lost it.

He slammed the cup to the ground, splattering milk all over the newly cleaned floor, cabinets, refrigerator, and range. He fired off a round of the most terrible yet nonsensical language you'd ever hear come from the mouth of a seven year old, and stomped upstairs where he proceeded to kick the walls, punch and abuse the long-ago-destroyed plantation shutters in his window, throw toys and books out of his closet and all over the freshly vacuumed bedroom and hallway floors, and once I finished mopping up the milk, I broke the cardinal rule of parenting an autistic child.

I lost it, too.

I yelled. He yelled back. I took him into a "basket hold" to prevent more damage to his room. He craned his head around and spit into my face. I held him tighter. He squirmed free and landed several punches and kicks on my arms and back. I threatened him with a cold shower. He screamed at the top of his lungs. I mustered all my emotional resources and left him in his room with a warning that if he didn't stop, I'd be back. He resumed his destruction of the walls and windows. I returned. And so it went for nearly 40 minutes.

I couldn't stay in the room with him because he continued to hurt me. I couldn't leave him in the room alone because he was literally destroying it.

All I could do was ask him, over and over, to use words. "Ben! Use words to tell me what you want! Just ask for what you want! PLEASE just tell me what you want--tell me in words!!"

At long last, when I had just begun to think that I really could not survive one more minute, he yelled, "Fine! Mom-will-you-PLEASE-get-me-some-milk?!" So, I did. As quickly and quietly as I could, I retrieved a paper cup of milk and a cookie, and brought them to him in his bed. I watched him in a haze of fatigue, heartache, and relief as he calmly dipped his cookie into his milk and consumed both with the gentle slurping sounds of contented childhood, as if nothing at all had interrupted a serene bedtime ritual. Three minutes later he was buried under his blankets, sound asleep.

For the past few weeks, I've caught myself watching internet video clips, t.v. shows, and movies about autistic children (The Temple Grandin Story is a particularly lovely movie, by the way, if you haven't seen it yet). Secretly, I've been hoping that the children in those clips and shows would not be anything like Ben. I've caught myself hoping that the language, coping skills, and behaviors of those other children would seem totally foreign to me. However, everything I've seen only reinforces to me that Ben is autistic, and my heart hurts.

So tonight I find myself sitting alone at the kitchen table, my arms and back aching from Ben's earlier blows, my hands still stinging from his fingernail scratches, and I can't seem to stop crying. I'm crying because I can't always understand him. I'm crying because I don't know how to "fix" him. I'm crying because I don't know how to reach him.

And tonight, when I trace the uproar of the evening back to its genesis, I'm crying over a paper cup of spilt milk.

The Tilted House

Last week, Ben came into my room and asked, "Mom, did you ever recognize that our house is tilted?" And then, with a flourish of hand motions, and speaking at a pace slightly faster than presto, he began to hypothesize that it's only tilted a little bit, that way (toward the backyard), but it's probably because the house is built on a hill and that's why it's tilted but just a little bit--did I ever recognize that it was tilted?

I had two reactions to Ben's announcement. First, I felt certain that if I were to drop a plumb line and hold up a contractor's level, I'd certainly confirm that the house is, indeed, tilted a little bit toward the backyard. That would explain why the door frames leading out to our back porch are cracked all the way around, and why the doors stick. Ben's mind works mechanically and geometrically--he sees shapes, angles, and connections differently from how most of us see them. If he says the house is tilted, then it most likely is.

My second thought was that the house is tilted, too, in ways that Ben never recognized, either. That is, our house is tilted toward him.

Not too long ago, as we drove home from church, my husband, children, and I chatted casually but loudly about things we had heard and learned during the meetings. Suddenly Ben said, "Mom--Mom! My teacher...." and the car fell into absolute silence while Ben shared his experience. When he finished, and after I issued the standard, "Cool, Ben..." in response to his statement, my daughter said, "Isn't it funny how we all just get quiet when Ben wants to talk, so that he doesn't have to keep starting over and over?" And I realized that she was right.

An old stock broker commercial used the slogan, "When E.F. Hutton talks, people listen." The same slogan could be applied to our house: When Ben talks, people listen. However, unlike the hushed reverence that E.F. Hutton commanded, Ben gets our undivided attention because if he doesn't, the house doesn't just tilt anymore--it begins to crumble. I've written previously about Ben's struggles to complete a thought without starting the sentence over half a dozen times. If he gets interrupted at all while he's trying to speak a sentence, he has to start over, and each time that happens he becomes a little more frustrated until finally he loses track of his thought altogether and descends into a flurry of shouting, spitting, hitting, and throwing objects. By then we've reached a point of no return--and everyone in this house has learned that it's much, much better just to make sure Ben can speak without interference of any kind.

The house tilts again toward Ben whenever he gets upset. Because "upset" for Ben doesn't look anything like "upset" for me, or Chris, or the other kids, or anyone else I know, really. "Upset" for Ben looks like a tornado in the middle of a hurricane during an earthquake. If he forgets what he wanted to say, or if he feels like he has been treated unfairly, or if he can't beat a level on his computer or Nintendo DS game, Ben screams--sometimes obscenities--, punches and kicks people or objects, upends furniture, tears books and papers, and throws anything within reach...and I do mean, anything: dishes, tools, toys, cats, etc.

And what do we do? We take cover, usually. If I can get him into his room, he'll spend several minutes throwing heavy objects at his door, but on the best days he'll eventually climb into his bed, pull the blankets and pillow over his head, and just stay there for up to an hour until he feels back in control of himself. The quieter and darker, the better. I have to resist the urge to go into the room with him to try to talk it out--that never works, and only stirs up more agitation. He just needs quiet.

The other solution when he's raging is to coax him into the shower, where he finds sanctuary in the solitude of the location and comfort in the regular patter-patter-patter of the warm water over his body. He will spend hours in the shower--long after the water has gone cold, actually--creating machines and contraptions out of his collection of shower toys that grows bigger with each new shower. Sometimes we enter our shower to find it six inches deep with buckets, dump trucks, cups, toy cars, plastic tools, balls, bowls, and various other toys and receptacles that Ben has been using as part of his creative--and soothing--process.

A couple times, I've gone in to retrieve him from the shower to find the water cold and Ben's body bluish, and I've said, "Oh, Ben--why didn't you get out? You are so cold!" He just responds, "I'm not cold. I don't feel cold. Do I have to get out?" Fortunately, he rarely resists a warm, fluffy towel in those moments, and most importantly, the rage that propelled him into the shower in the first place has long since passed.

Yes--the house is tilted. Physically, probably. Emotionally, definitely. We tilt toward Ben, when he talks, when he's angry, and when he's doing well, too...just to make sure he stays that way. After all, a tilted house is much better than one that's falling over entirely.

Reading and Rules

Ben's reading skills really blossomed at the end of first grade--he went from one of the lowest reading groups to one of the higher (not highEST, but highER) ones in a matter of weeks. This is typical development for Ben--all progress for him comes as a series of leaps and plateaus. For example, when he learned to walk, he didn't do it progressively, a few steps and then a few more, until finally he stumbled toddler-like across the living room. That's how "normal" kids learn to walk. Ben,though, just waited until long after most kids start walking, and then he got up and ran away without any warning at all. He didn't learn to talk by verbalizing first a few words, and then simple sentences, and finally more complex language. He just waited until we were sure that he would only say "Bah, bah, bah!" for his entire life, and then he spoke in full sentences. Not necessarily comprehensible sentences (hence the speech therapy), but grammatically correct sentences all the same. Just like that. It's been the same for all developmental milestones thus far. So I did not worry when Ben could not read at the beginning of first grade, and I was not worried when he seemed to make no progress throughout the year, because I knew that it was coming. And sure enough, sometime in March or April, he just started to read.

But reading has brought with it some unexpected changes in Ben's personality. Because, now he can read the rules--and rules are a very important part of Ben's life. For example, we went to the public pool a few weeks ago and Ben immediately spotted the "Pool Rules" sign hanging from the locker room wall. He read it from top to bottom, and then he turned to observe the application of the rules around the pool. Not surprisingly, several violations were in progress. Ben became upset quite quickly. He demanded, "Mom, WHY is that kid running? The rules say, 'No running.' But that kid is running. Why is he running?" I tried to explain that not everyone reads and follows the rules, but Ben spent the rest of our time at the pool pointing out running children, until he became sufficiently aggravated that we had to head home. We've returned to the pool a couple times since then, and each time Ben is careful to point out the rule-breakers to me. All of them.

Reading has its perks, though, too. For example, Chris (my dh) created signs for all Ben's dresser drawers, and now Ben is able to put away his laundry in separate drawers instead of shoving all garments into a single drawer. I can create chore lists, and menus, and Ben derives a significant sense of control by knowing the established expectations. But I wonder how this school year, which begins in just two weeks, will be different for Ben now that he can read the rules of his environment. I think it could go one of two ways: either he will feel safe and comfortable, or he will feel continually irritated as those around him violate the sacrosanct class rules. Time will tell.

Concrete Thinking and a Bit of Golf

Earlier this spring, in anticipation of the impending "I'm bored!!" complaints of summer, I started looking for some activities for the kids. Ben presented a conundrum. After last year's baseball debacle, which consisted largely of twelve post-toddler children moving in a herd toward a lightly swatted baseball while Ben rolled around in the grass behind them, rising only occasionally either to throw handfuls of grass on someone's head or else to make a mad dash toward an adjoining baseball field, I felt like we needed to try something new. Since Ben's oldest brother Zach is a pretty good golfer, and since I was already looking at some golf instruction for Zach, I asked Ben if he would like to try golfing this summer, too. "Sure." Why not. So I signed him up for the "7 and under" class at Fox Hollow golf course.

He's been to two lessons now. The first lesson taught Ben how to set up for his swing--proper stance, grip, etc. I thought he did pretty well, except that large portions of the class were spent asking me and the class instructors why he couldn't use the tees that were scattered and splintered around the driving range, and the more persistent question: "How long or more until this is over?" I really don't know when he decided that the "or more" part belongs in that question, but he always uses that phrase when he wants to know about time: "How long or more until we're there?" "How long or more until I can use the computer?" "How long or more until until my 15 minutes is over?"

At golf class, he wasn't asking about the time because he was bored (I told him he could stop if he didn't want to hit balls anymore and he said he wanted to keep going); he just wanted to keep track of the time. I probably should get him a watch...

Yesterday, he got to use the tees. So he spent about half of his hour-long class hitting balls, and the other half counting the remaining balls in his pile, and assessing the length and quantity of broken and remaining tees that were spread around the grass. And of course the question: "How long or more until this class is done?"

After class, as we walked toward the car, he was particularly quiet. I assumed he was thinking about the class--the sand trap that had caught his attention, the tees, the machine that scoops up balls from the range. Finally he asked the question that was on his mind:

"Mom, why did Heavenly Father choose to make all the people out of meat?"

I really wasn't prepared for that one, but it reminded me of a question he asked a few weeks ago as we sat down to dinner. That night, he had put a piece of chicken into his mouth and then asked, "What kind of animal did they kill for this meat?"

He has asked a lot of questions lately that have demonstrated his very concrete way of perceiving the world around him. For example, Chris (Ben's dad) has sported a beard for the better part of this year, until a month or so ago when he shaved it off. Ben took one look at his newly shaved dad coming down the stairs and said quite matter-of-factly, "It's weird that you don't have a beard and you have a chin. Where is your beard now?"

Not long ago, Ben asked me to make some popcorn for him. I said, "Ben, I'll do it in a second--just wait." He left, and then came back a few minutes later to repeat his request. I still wasn't ready to make popcorn, so then I said, "Just a minute, Ben, and I'll do it." Again Ben walked away, and then, about three minutes later, he came back and repeated his request a third time. As I started to tell him to wait, he stomped his foot and exclaimed, "Mom! It's been WAY past a second AND a minute!" He was right--it literally had. I made popcorn.

And on another night, as I was washing dishes in the kitchen, Ben and his older brother Joey were playing in the family room. Joey said, "Mom--look at this!" I responded, "Joey, I can't see into the living room; I haven't turned on my x-ray vision today!" After a moment of silence, Ben's voice quietly and hopefully called out: "Can you turn your x-ray vision on, then?" And that same evening, as Chris sat at his computer, I said something that made him chuckle. Ben came over to the computer and said, "What are you laughing at?" Chris replied, "Oh, nothing. I'm just laughing at your mom's logic." Ben said, "Well, can I see mom's logic?"

It's hard for Ben to distinguish sarcasm from truth. Often when I tease him he'll ask, "Are you being serious about that?" He needs me to tell him when my words mean exactly what they say, and when they have a veiled meaning. I suppose it's hard for him to be in groups of people when he's always struggling to assess meanings of words and behavior. No wonder he didn't do well in baseball, I suppose--it's not surprising that a more solitary sport would better suit him.

He's only got one golf class left this summer, and I don't know what he'll be doing. But I'm pretty sure I know what question he'll be asking when it's over: "How long or more until I take another golf class?"

Finding Balance

Well, it's been a while since I've added updates, mainly because Ben's life has been pretty smooth for the last couple months. We had to adjust his medications a while back, but he seems to be doing well on the new dose. And after he went a bit crazy and attacked a classmate right after school one day, we seem to have him on a balanced recess vs. quiet time schedule that keeps him pretty focused.

Huh? I haven't told that story? Sorry about that...here it is:

A few months ago, I drove to the school and then sat in my car, in line behind somewhere around a zillion other parents, at the top of the circular drive that is supposed to be used for dropping off and picking up kids in front of the elementary school (you'd think all the parents would be clear about this system, but there continue to be some who think it's a "put it in park and have a picnic" lane...but that's for another time and another blog...), waiting for my turn to pull down and gather my offspring. As I sat there, I spotted Ben standing near the kindergarten equipment, pummeling the heck out of another child. And not just any other child, but the one he'd had the most trouble with from the time we started preschool--the one who has a mother who already thinks I'm incompetently raising an antisocial child (as if there might be a way to competently raise an antisocial child...). The one whose mother thinks we have family meetings about the best way to attack an unsuspecting innocent from behind.

Because that's what happened. This child (whom I will refer to as "Billy" in order to preserve his privacy) stood waiting for his mother, and as I helplessly watched from the top of the hill, Ben approached Billy from the rear and laid into him--hitting, scratching, kicking--completely unprovoked. I saw the whole thing. So did Billy's mom, who was also trapped among the pressing auto throng, and she was not happy. Not at all. When we finally reached the children, this mother "invited" me to join her in the Principal's office. I found a parking spot (resisting the incomprehensible custom of parking right there in the circular drive, but again I digress...), took hold of Ben's hand, and for the first time in my life, reported to the Principal for reprimand.

The first thing I discovered was that Ben had already been involved in a problem at recess earlier in the day involving Billy and a couple other boys, too. In that situation, Ben had decided that the other boys were doing something inappropriate, and so he announced that he was going to get a teacher. These boys knocked him down to keep him from reporting their wrongdoings. Billy's role (because he happened to be standing nearby at the time and witnessed the event) was simply to defend Ben when the Principal was trying to sort out the reports. Billy took Ben's side.

In the Principal's office, Ben explained that after school, an older boy had made a loud noise and scared him. The Principal asked him, "Ben, if another boy scared you, then why did you attack Billy?" Ben explained, "I was going to get the other boy, but then I saw Billy, so I attacked him instead."

Oh, gentle readers, I know that right now you are plumbing the depths of your psychological knowledge to make some kind of sense of that response. You are thinking that surely there must be a connection--something to do with Billy's familiarity, or with finding some sense of safety in attacking someone who had just championed Ben's cause an hour earlier. But here's a small insight that I gathered years ago about Ben:

Don't try to make sense of anything. Ben does not live in the same world that we do--he does not process social expectations like you or me, and he does not act in logical, rational ways when he is pushed into a state of alarm or intense emotion. He just reacts, usually violently, and that's all there is to it. But back to the story:

After Billy's mom completed her quite justified torrent of tears and frustration that her son was not being protected adequately from mine, the Principal assured her that we would make some changes, and then he excused her and turned to me. He made some suggestions that I agreed with. First, we decided that Ben should not go outside for recess for a while. Instead, we decided that I would put together a recess bag filled with legos, and playdough, and art supplies, and Ben would spend recess times in the office adjacent to the Principal's office, doing projects on his own. Second, we agreed that from then on, his teacher would walk him to a specific door after school where I would be waiting to meet him, so as to minimize his contact with other children and limit his exposure to the noise and chaos that floods the school grounds after the final bell.

I know--it seems cruel to tell a child that he cannot go outside and play during recess time. But to Ben, this was a slice of heaven. For two weeks, he quite happily reported to the Principal's office during each recess break and played quietly on his own. Not surprisingly, his behavior and performance in class quickly improved--especially in the afternoons when he had previously been having a difficult time with his behavior. After two weeks, the Principal thought it would be best for Ben to go outside for at least one recess. Ben met this suggestion with resistance, insisting that he would much rather be alone with his toys, but wisely the Principal suggested that just because Ben is more comfortable being alone, that does not mean that it's in Ben's best interest to spend so much time away from other children.

So for the last month or so, Ben has been spending the lunch recess outside. The Principal has an aide keeping a close eye on him, and honestly, I have no idea what he does when he's out there. Sometimes I ask him if he has friends that he plays with, but the answer is always the same: no. When I ask him to tell me the names of some of his friends, he always says, "I don't really know." When I ask him to tell me the names of some of the kids in his class, the response is usually also the same: "Um...I'm not really sure." Occasionally he comes up with a name or two, but usually not.

Still, we seem to have struck a balance that works. Ben spends one recess outside, and then he spends the afternoon recess in the Principal's office. The Principal has supplied several puzzles--Ben's favorite activity--and Ben works those puzzles each afternoon. His teacher reported that when Ben comes back to class after he's been working on his puzzles, it's like he has been reset, and he can focus on his work just as well as he does when he gets to school in the morning.

I find myself thinking about next year already. It's time to request teachers for the coming school year, and I'm at a loss. I fear that no one will have the skills and the patience that Ben's current teacher has. No one will understand him quite so well, or accommodate his challenges quite so adeptly. I'm sure I'm wrong--certainly there are 2nd grade teachers who will help Ben succeed. But I worry. Balance is a precarious achievement at best, and I just don't want to lose it--not when we finally seem to have found it.

Christmas Craziness

Ho, ho, ho! Ho, ho, ho! These little syllables blurted out in quick succession can make anyone seem a little...well...nutty. Justifiably so. Christmas is one of those times of year that, for all the joy and excitement of the season, nevertheless always seems inescapably emotional, intense, and stressful.

A few days before school ended for the holiday, I was over at the school as the first graders were returning from a rehearsal for their Christmas program. Ben's teacher stopped in the hall to chat with me for a moment as the kids headed outside for some much-needed fresh air. I asked her, "So, how is it going?" She replied, "Well, it's definitely Christmas."

She went on to explain that Ben was having a hard time dealing with the changes in his class schedule, and with the heightened energy that electrified the school as hundreds of children anxiously anticipated school vacation and holiday gifting. It seems he wasn't able to get up from his desk for any reason without feeling compelled to rush over to any random nearby classmate and issue a push, or a hit, or some other intrusive form of touching. I wasn't sure if he'd make it to the last day of school or not, but he seems to have gotten through (much to the credit of a very patient, caring teacher).

Yet out of chaos, Ben managed to create order. As he came home from school on the last day before Christmas break, he produced from his backpack two pages of very intricate pin-hole art. I can't imagine how many hours he had spent at school carefully poking hundreds or maybe thousands (I am not exaggerating--I would not have had the attention span required to accomplish this project) of evenly spaced holes into his construction paper with a push pin, following complex patterns to create images of candles, holly, and candy canes. I could sense from his short demonstration of the process that the project had soothed him, offering him a chance to focus his mind on a single, simple task while simultaneously shutting out external stimuli. Once home, he located more construction paper and spent a few more hours sprawled out on our living room carpet punching patterns into the colored paper with a small push pin. I suppose it's the same rhythm and motion that calms him when he works puzzles or creates mosaic art with small foam shapes--both good "go to" activities when he's uncontrollably upset.

I was humorously reminded of Ben's need for order when he discovered one evening that I had wrapped a gift for myself and placed it under the tree--a clear violation of the gift-giving custom. He read the package: "To mom...from...mom?" Then he called out to me: "Mom! Why does this present say 'to mom, from mom'?" I explained that I had given myself a present. "You gave a present to you?" he repeated. He thought about this for a moment, puzzlement lining his scrunched up face, and finally said, "Oh. Well...do you know what it is?"

Ben loves Christmas. He is delighted when we extricate the tree and decorations from the attic and set them up throughout the house every season. He looks forward to "Christmas milk" (his title for egg nog) all year long, and drinks gallons of it by himself as long as we bring it home. And yet, I think that in some ways, like all of us, Ben likes to put Christmas away when the season has ended. He won't admit that he does (quite the opposite, actually), but I sense the calm that comes over him when our home is restored to its original decor, and when the routines of school and family are reintroduced. Out of chaos comes order; out of Christmas comes a new year. I wonder what this one will bring...

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.

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.