Adventures with Autism

Doors and Damage Control

2011-12-05T10:41:00.001-08:00

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.

To Medicate, or Not To Medicate?

2011-07-20T08:59:00.000-07:00

About three years ago, sometime during his Preschool year, Ben started a regimen of Adderall to help control his impulsivity, outbursts, and general inability to sit in a classroom without clubbing the skins off his neighboring classmates. The medication has worked really well for those things; I even blogged about trying to switch his medication right before first grade began and we quickly retreated to the Adderall because it was the most effective thing we'd tried so far.

In recent months, though, my husband (largely through his profession as a clinical psychologist) has been reading reports of serious harmful consequences arising from the long-term use of Adderall. Of course these reports come and go, and we both recognize that one or two studies do not constitute undeniable "proof" that Adderall is dangerous, but we nevertheless have been feeling concerned.

As the summer started, my husband said, "I just wish I could take two weeks off work, go away with Ben to a hotel somewhere, and wean him off the Adderall just to see what would happen." I glanced around at the hole-riddled walls, across at the outburst-scattered litter of toys on Ben's floor, down at the meltdown-induced scratches on my arms, and I said, "There is NO way, honey. This household could not survive Ben without meds."

And then a few days later, the impossible happened almost by itself. I overslept one morning, and so because I did not give Ben his meds on time, I skipped them. Since it's summer though, Ben slept in past noon anyway, and then got up and immediately logged onto his favorite computer game. He pretty much kept to himself all day, and seemed to do just fine without the medication. No screaming, yelling, or melting down of any kind. So I thought, "OK, let's try one more day." Day two without meds went pretty much like day 1--quiet as Ben kept to himself, but even when he emerged to eat or watch television, he had no major eruptions. Then we tried day 3, and day 4, and day 5, and suddenly two weeks had gone by without any serious outbursts, without any major meltdown, and without any medication.

Ben even came to me after about 10 days without medication and said, "Mom, did you ever notice how I am not getting so angry like I used to when I took that medicine?" I told him that I did notice, and that I was very proud of him.

Then we started experimenting with social activities sans medication. First was church. Granted, he had trouble sitting still in his chair for much of the meetings, but after church he reported that he had answered questions in his class and even been awarded an extra piece of candy for being very good. I'm choosing to believe this report. He's been to church several times now without meds, and unless I'm not getting the official brief, he seems to be handling the stimulation just fine.

Then we tried a movie, and he sat through the whole thing without incident. Last week we took a road trip from Utah to New Mexico and Ben announced, "Mom, THIS will be the real test of how I can do without my medicine!" Reflecting back on countless trips marked only by the blessed hours when Ben would finally fall asleep, I agreed with him. And because it's starting to seem like miracles really do happen, Ben had a calm, focused trip.

Now we face a conundrum. While 98.6% of the time Ben has been amazingly calm and well-behaved without medication this summer, we have nevertheless had a few moments of "provoked" frenzy that would really pose a dangerous situation for classmates should they occur at school. His very infrequent outbursts end up being explosions of kicking, punching, spitting, biting, screaming, and utter inability to self-soothe. Thus far these moments have only been inflicted upon family members. My husband and I are wondering if the school setting would provide enough structure and unfamiliarity that Ben would pull back from such outbursts, or if he would still lose control even among his classmates. It is an unknown for us that leaves us wondering what to do.

Off-meds-Ben is a charming, delightful, funny, wonderful boy who is not forced to endure the pharmaceutically induced highs and lows of changing brain chemistry. I absolutely do not want to place him back on Adderall, under any circumstances. But I am very anxious to see how he can perform in school without something to help him deal with provoking situations that cause him to feel mistreated.

So that's where we are: do we return to medications once school begins, or do we "give it a shot" and see how Ben can do in the classroom without any chemicals in his system? I suppose it might be a system of trial and error--but please don't let the error be too big.

Just Emotion That's Taking Me Over...

2011-05-07T12:30:00.000-07:00

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

2011-02-04T15:28:00.000-08:00

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.

Out with the Old...

2011-01-25T15:05:00.000-08:00

Before Christmas, we thought we'd encourage the children to purge their rooms of clutter by offering them a dollar per pound of old toys, books, and clothes that they could load into trash bags for donation or to discard. Each of our four children headed off to his or her own bedroom to begin the process of bankrupting us, and eventually three of the kids returned with bulging sacks, eagerly awaiting their payday. Ben, however, did not fill any trash bags and eventually slinked downstairs to watch television.

Later in the day, I asked Ben to join me in his room while I helped him earn some Christmas money by getting rid of old, unused things. First I picked up a small plastic Happy Meal toy from his floor. I said, "Look, Ben--you don't need this old McDonald's toy--let's put it into the bag!"

Ben shrieked. "No! I like that toy! I don't want to get rid of that!"

So, I rummaged around in Ben's overflowing toy basket and found some small plastic pieces in the bottom. I was certain that Ben hadn't even seen these pieces for many, many months. I said, "OK. How about these. Let's just put these into the bag..."

Another shriek, and now Ben was in tears. He cried, "I need those things--I love them! Don't throw them away!"

And so it went a few more times, as I'd find something I was sure Ben no longer used or needed, and he'd insist that the piece was very special to him and he could not part with it.

I tried to reason with him that Christmas was coming, and that he was going to get all kinds of new toys to play with, and then I thought I'd just see what happened if I dropped something into the trash bag--maybe once the deed was done, Ben would see that it wasn't such a big deal.

I was wrong. As I tossed the first Happy Meal toy into the trash bag, Ben went berserk. Sobbing uncontrollably, he picked up the nearest object (a plastic tube from a trophy he had recently disassembled) and hurled it at me. I shielded my face from the blow and ended up with a nasty cut on my wrist as the edge of the tube bounced against my arm. And that was the end of my interest in helping Ben earn some Christmas money. I left the room for a quick time out while he sat on his bed sobbing.

After a few minutes I returned and took Ben onto my lap. He pushed me away and curled into a ball at the foot of his bed. "Ben, what happened?" I asked.

"I had to throw that at you because it was the only way to make you stop putting my things in the trash bag!" he yelled.

My first response was to be glad that he had the insight to explain his behavior--that was a significant milestone for him! My second response, though, was a sudden realization that Ben's objects provide him with an immense sense of safety and control. Throwing away his things--even the ones that he never plays with or even sees--felt to him like I was throwing away the underpinnings of his environment.

This is the child who walks into a home he hasn't been inside for three months, and immediately notices that a light fixture has been changed, or a piece of furniture has been relocated. I don't know how he "sees" things around him, but certainly every object has a place and a purpose, and throwing away some of his things must have felt very frightening and confusing for him. When I realized what the process was like for him, I felt terrible that I had forged ahead so callously.

I'm glad to report that eventually, Ben and I together did find some books and clothes that he decided he no longer needed, and we even identified just a few toys that he agreed were no longer necessary to his schema.

But what I learned most of all is just how important physical objects are to Ben's sense of control and peace.

"In with the new"...absolutely.
"Out with the old"...not so much.

He's Holding the Moon

2010-11-27T11:47:00.000-08:00

Last week we traveled to California to spend the Thanksgiving holiday with family. As we loaded the car with luggage, snacks, and movies, I instructed all the children to take their backpacks to their rooms and fill them with activities for the road--books, crayons and paper, small toys, etc. We've been on two other road trips recently, so I felt confident that each child would be able to retrieve appropriate items. Soon the children reemerged with bulging backpacks. We tucked everyone into the car, and set off.

Ben (seven years old) immediately extracted his Nintendo DS from his backpack, and between that and the movies playing in the Suburban's tv/dvd machine, he was content for the first three hours of the drive. Then, as the dark of night crept over us, the car's interior was suddenly illuminated with a soft blue-white glow. My husband glanced at the seat behind me where Ben was sitting, chuckled, and whispered, "Oh--he's holding the moon."

From his backpack Ben had withdrawn the glowing moon that normally hangs on his wall. It's about 15-inches in diameter, concave, and filled with LED lights that illuminate intermittently to resemble the lunar phases.

Using the light of the moon, Ben reached into his backpack again and this time, in true Cat-in-the-Hat fashion, withdrew a full-sized dvd player and assorted cabling, and proceeded to connect his device to the car's existing dvd player--directing me as to the proper hookup of the cables into our vehicle's ceiling-mounted system while he handled the cabling in the back of his own machine. "Why?" I asked him? "Oh, in case the room I stay in doesn't have a dvd player," he said. "But why are we hooking this up to our car right now?" I continued. "Um...I just want to," he answered.

Still in a halo of artificial moonlight, Ben next withdrew a six-inch raw speaker woofer which he had recently extricated from an old karaoke machine. He explained that he needed this for the magnetic properties of the back plate. I asked him why, to which he replied, "Um...I don't know. I just do."

My daughter took Ben's backpack to investigate the remainder of its contents. All that remained were a laser-pen and two screwdrivers--a Phillips, and a flat head. "Why did you bring screwdrivers, Ben?" I asked? "Oh...just in case," he replied. A worried curiosity washed over me: Just in case what?

Turns out, those screwdrivers came in handy over the next week as Ben deftly removed all the hat hooks from his cousin's bedroom wall, disassembled a spin-art toy in order to examine the interior spinning mechanisms, and made an internal repair to one of his cousin's light-up vehicles. None of these things were done with permission or supervision, but none surprised us. Ben's favorite Christmas present last year was a carton of used, broken appliances that I picked up from the local thrift store, along with a new bag of tools. And whenever a replacement appliance or toy appears at our home, Ben's first request is that he be given the old one so that he can take it apart and examine the internal mechanisms. His room is littered with little screws, wires, cables, plastic and metal components of varying shapes and sizes...Sometimes I feel like a street performer who gingerly picks her way barefoot over a path of broken glass as I try to get to Ben's bed at night to tuck him in.

As I've reflected on Ben's choice of "good activities" for the trip, it occurs to me that he chose exactly the right things for himself--he brought the tools and supplies that helped him feel like he was in a comfortable, familiar environment. He doesn't love coloring or reading. He loves building and wiring, and figuring out how the world around him works. So he chose to pack things that allowed him to do exactly that.

As for the moon, I'm sure he had practical reasons for bringing it, too. Most likely he was anticipating needing a source of light once night had fallen, but there may have been an element of familiarity tied to it as well.

But I find myself reflecting on his lighting choice a little more philosophically than he might. Sometimes I think that Ben's mind, and his comprehension of things, is as mysterious as the universe itself. And yet, like a galaxy of stars, he brings a unique and gentle light to our lives. In his hands on the night that we drove to California, and in the center of his soul, Ben is holding the moon.

Crying over Spilt Milk

2010-11-11T21:51:00.000-08:00

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

2010-11-06T11:16:00.000-07:00

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.

The Club of Boys Who Are Awesome

2010-09-12T22:14:00.000-07:00

Second grade is officially underway, and so far, so good. I'm skeptically optimistic that this might shape up to be a pretty good year for Ben. How's that for motherly thinking?

Before the year began, I sat down with Ben's new teacher and described some of my concerns for the year--things that I thought we'd better get a jump on before Ben's behavior spiraled out of control. I suggested that Ben continue his routine of spending one recess outside, and one recess working puzzles in the office so that he could emotionally "reset" for the afternoon. I warned that Ben might need a special spot on the rug where he would be away from the kids and out of the general noise and touching that goes on in the heart of the rug. I noted that Ben struggles with spelling and would probably need some special accommodations if he was going to succeed in that particular academic discipline.

And I'm wondering if Ben's teacher thinks I'm crazy now, because Ben has been the poster child for well-behaved students this year (at least, that is what I'm seeing on his end-of-week report cards, and that's what he's reporting when I pick him up after school). Here's a typical after-school conversation:

Me: How was school today, Ben?
Ben: Um...good.
Me: Did you have any problems?
Ben: Um...I don't fink I did.
Me: Good! Did you play outside today?
Ben: Um...yes. I did play outside.
Me: Did you play with any kids?
Ben: Well, I fink I did. At one recess I did.

But my favorite conversation of the year continued when I asked him what he did during recess. I expected the same answer I've gotten since Kindergarten ("I don't really remember. I don't know."), but I nearly cried for joy when one day he said, "Um, well, I played soccer."

Now, mothers of normally social children won't think much of this response. Why wouldn't a child play soccer at recess? But Ben has never played a social sport in his life (not willingly, anyway--and I hardly think the things he did on the t-ball field count as "playing a social sport"). He has never had much interest in playing with other kids at any time. So when he announced that he had played soccer "on the field with the big kids" one afternoon, I couldn't have been more surprised if he had announced that he had built a particle accelerator and successfully split an atom. Frankly, the atom-splitting seems more likely.

But it gets better. Because when I pushed him to tell me about playing soccer on the field with the big kids, he announced in his characteristically nonchalant manner, "Oh, we all did. Because I'm in the Club of Boys Who Are Awesome, and Logan is in our club and he wanted to play soccer so we all played soccer." I don't know Logan, but I hope Santa Clause visits him weekly and showers gifts and glory upon him regularly. Because Logan is also in the Club of Boys Who Are Awesome. He may be the only other one in the club, of course--I don't know, because Ben can't say who else is in the club, or how he came to be in the club, or any other of a number of questions I tried to pepper him with upon hearing this unexpected news, but frankly, I don't care. Ben feels like he belongs to a group of children. And this is a miracle of unexpected proportion.

Ben's new interest in some social connections has raised another interesting issue, though, and that is Ben's inability to remain clothed for an entire day. I haven't officially timed him, but I'm pretty sure that it takes him somewhere around 6.7 seconds to come in the door after school, and immediately strip down to his underwear. Growing weary of the "tighty-whitey" look, we recently bought him some boxer briefs that at least marginally create some semblance of decency, but even when he's wearing briefs, Ben can't wait to get out of his clothes. I've asked him why he insists on introducing near-nudism to our home, and he always says something about how his clothes make him hot, or how the tag itches his neck (even though I've removed every single tag from every single shirt), or how the collars of his shirts (even t-shirts) feel uncomfortable touching his neck. The bottom line is that he can't stand the feeling of the fabric against his skin, and he just feels better without any clothes at all.

Some of his anxieties at school are being taken out on his shirts this year (which is infinitely better than taking them out on his peers). Every day, he comes home from school having chewed through the collar of his shirt. His t-shirts are soaking wet from neck to mid-chest; they are twisted and often riddled with holes and rips. On his end-of-week report this week, his teacher noted that she has been working on the chewing with him during school, and sometimes she can get him all the way until about 2:00 before he can't hold off anymore. I've done some research on shirt-chewing, because I know that it's not unique to autistic kids. However, most children apparently outgrow the habit by age 4 or 5, and those who don't often need the help of an occupational therapist to overcome. In autistic kids, chewing is a fairly common way to express anxiety or stress, so it makes sense that Ben is chewing his clothes in the afternoon every day--I suspect that he just reaches a point where he starts to get overloaded, and chewing is one outlet for that. I've read that I can get special necklaces that are made for chewing, but I don't know if Ben would like that or not. If the behavior continues, I'll have to check into them.

I have noticed lately, though, that Ben has begun to understand that certain social situations demand clothing. For example, when he hears that the babysitter is coming over, he occasionally will slip upstairs and reemerge wearing clothes. He did the same thing when he heard that his grandpa was coming over one afternoon. However, as we urged him to get dressed so that we could go over to his aunt's house one day, he demanded, "Why can't I stay in my underwear? Everybody knows that this is how I like to be comfortable!"

And one morning last week, as I was trying to get him dressed before school, he announced that he did not want to wear pants to school. Playing on his new social connections, I asked, "Ben, what would the Club of Boys Who Are Awesome say if you showed up to school wearing no pants?" He thought for only a second before responding, "Oh, they would say, 'You're fired!'" And then he put on pants and went to school.

Wonder of wonders, miracle of miracles.

Reading and Rules

2010-08-03T15:38:00.000-07:00

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

2010-06-09T14:57:00.000-07:00

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

2010-04-14T23:39:00.000-07:00

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

2010-01-04T15:51:00.000-08:00

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...

Change is Good...Right?

2009-11-22T08:32:00.000-08:00

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

2009-10-30T22:23:00.000-07:00

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?

2009-10-14T09:48:00.000-07:00

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...

2009-10-03T15:50:00.000-07:00

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

2009-09-24T13:27:00.000-07:00

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!

2009-09-13T18:12:00.000-07:00

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

2009-09-04T20:28:00.001-07:00

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

2009-08-30T19:34:00.000-07:00

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?

2009-08-25T23:25:00.000-07:00

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!

2009-08-20T22:16:00.000-07:00

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

2009-08-17T12:02:00.000-07:00

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.