Code Black

Mom, code black.

Those are the words that popped up on my phone a couple weeks ago on a Wednesday morning, just a week after the beginning of the new school year.

And here we go again, I thought. Let the games begin.

How long have I been keeping this blog? Six years? Seven? Maybe even eight (though admittedly, these past few years have been scant), and it seems like by now, I would have a copy of this mysterious code book. I mean, I watch enough television to know that "code blue" means someone has stopped breathing, and I'm pretty sure that we had a few "code browns" when Ben was two and learned how to take off his diapers and use the contents to finger paint all over the walls (sorry--should I have posted a trigger warning before saying that?)... But I wasn't quite ready for "code black," though it certainly seemed ominous.

What followed the cryptic warning was nothing short of a narrative straight out of a Laurel and Hardy script--except I couldn't decide whether I was supposed to laugh or cry. I reproduce it here only with small revisions to grammar (because, well, I can't help myself), but the vocabulary and structure is all Ben's own:

So here's what's happening right now. I'm in the counseling office, post-controlled meltdown. I was in Digital Literacy. I was picking at my lip (I get it--bad idea, shouldn't have done it, you don't need to mention it). It started to bleed intensely. I ran to the tissue box, but it wasn't enough. So the teacher sent me to the bathroom, where I was washing my hands and washing the scab on my lip (still bleeding a lot), and everything was all swell. I was just standing there by the sink while pressing a paper towel to my lip, waiting for it to clot. Then, out of ALL the days and ALL the times, a fire drill went off. In the bathroom, so small, plated with tile, the only opening being a door followed by another door, the screeching was MUCH louder than usual, not to mention that it echoed, A LOT. It basically put me into shock. I sprinted through the doors and back to my classroom, with my lip still bleeding, barely clotted at all, a paper towel still pressed against my lip. We headed out to the soccer field. I was wanting SO badly to break down on the ground sobbing, but I didn't want to make that kind of impression on my new classmates, so I held back the tears and kept standing. We kept standing out there for I would guess 10 minutes in the 90 degree heat. I was extremely sweaty. We finally went back inside. And now I'm here.

So. That is apparently a code black.

I asked him what he needed, and he said that a lunch break would help, and I said I would come down to the school and take him out. After lunch, he went back to his afternoon classes (yes, of course he suggested that since I was already there, maybe we should just go home, but when I said no, he didn't resist).

Here's what's remarkable about code black:

• It wasn't the end of the world. It was hard, and then it was over.
• It was a learning experience, for Ben and for me. Ben discovered that he could get through a few challenges and move forward; I gained new appreciation for Ben's strength, wit, and insight.
• It marked a milestone of progress and growth. Only a year ago the bleeding lip alone would have been enough to put Ben into a meltdown and require me to pick him up.

I'm liking Ben in black. He began to demonstrate this new maturity at the end of the last school year (8th grade) when, as we were driving home from school he commented, "Mom, I don't think I'm emotionally ready to begin high school yet. I think I should repeat 8th grade again next year."

It was like a light illuminated the whole car. I had spent the past month in turmoil, worrying about the widening social and emotional gap between Ben and his 8th grade peers. I knew that moving into 9th grade--high school transcripts that colleges would review in a few years--could be disastrous. But I just didn't know what to do about it. And suddenly, there was the answer. Let's repeat 8th grade, and take another year to catch up on skills Ben still needs to be successful.

So that's what we're doing this year. Ben is repeating 8th grade, though he doesn't have to take all the "core" classes again, because he passed those last year. So he is enjoying his classes, and learning to work in groups, and developing new study and organizational skills.

And apparently, amazingly, he's learning to manage a code black.

The Final Frontier

I'm waiting for the phone to ring; I fully expect that it will within the next hour. Why? Because Ben is on an overnight (I use that term loosely) Space Camp mission that began an hour-and-a-half ago and is supposed to run all night, and all day tomorrow, while the Space Camp folks rehearse the week-long missions they will run this summer. Ben, who is an avid participant in his school's "Astro Knight" program (i.e. Space Camp), is supposed to be flying this mission with all his classmates so they can work out the bugs.

I started getting texts about half an hour ago:  It's too dark. It's too stressful. It's too hard. I can't do it. I'm already crying.

I have offered him every bit of wisdom and counsel I know: Take a little break. Eat a little snack. Say a little prayer. Just have a little fun!  Apparently if he does any of these things in small doses, it makes a difference.

It won't work. He will call soon, and he will come home without actually participating in this activity that he insists he loves so much. And I will resist the ever-present urge to compare him to the other kids at the camp who won't be coming home tonight, and who will have the emotional and mental stamina to endure a little discomfort and stimulation.

So, this is where I struggle to separate fact from fiction. The truth is, Ben uses his autism as an excuse to avoid things he doesn't want to do. We have a bit of the "Little Boy Who Cried Wolf" syndrome going on, especially when he is supposed to be in a class he doesn't like, read a book that doesn't interest him, or fulfill a responsibility he'd rather not do. He knows the words that will send me reeling to his rescue (they are akin to "I can't breathe" in mother-speak), and darn if he isn't due an Academy Award for his ability to burst into tears when the words alone are not enough. 

The problem is, maybe he isn't faking it. Empirically, his autism does indeed mess with his wiring, and so it's altogether possible that he really can't do it. He's very possibly experiencing something like fireworks exploding inside his head while I encourage him to eat a cracker. What kind of mother does that?

Well, the kind that just desperately wants her child to be like other (neuro-typical) children. That's the bottom line.

The kind of mother who isn't willing yet to throw in the towel. 

The kind of mother who believes that her child has infinite potential.

The kind of mother who doesn't want her child to live with regrets.

The kind of mother who believes in enduring to the end.


And, the kind of mother who is struggling to acknowledge that her child does have limits, and...more and more often these days...seems to be reaching them.

I don't believe that Ben's autism should be a stumbling block for him. A challenge? Yes. Of course. Just like any other mental, physical, or emotional disability would present a challenge for any other human being. But I'm not willing to give up, and I'm not willing to let him give up--not without a fight.

He'll come home tonight--I'm certain of that. I'm equally certain that he'll try again, and again, and again until he flies a space mission all night long and into tomorrow. Autism is Ben's final frontier, and Ben's mission is to explore it, chart it, and embrace it for all the challenges and opportunities it offers.

But tonight, right now, he'll come home--and I'll try to be okay with that. Autism is my final frontier, too, and I'm a weary traveler sometimes.

Have at Thee...

You know how sometimes you think, "Well, at least it can't get worse"?  Never, ever say something like that. It's like taunting, "Have at thee!" to the universe and then being surprised when the Sword of Attila comes hurtling out of nowhere and lops off your hand. The universe is just full of little surprises like that.

So, I really hadn't realized how dependent we have become on pharmaceuticals to manage the highs and lows (mostly lows---abysmal, black-hole lows) of Ben's autism until this weekend, when I stupidly, absent-mindedly, possibly just lazily let the prescription run out.  In my defense, Ben takes his own medications now and I don't see when the bottle is getting empty, but in his defense, he did tell me when he only had one pill left.  And I forgot.  On a Saturday. Saturday evening. After the pharmacy was closed.

And then, because I hadn't realized that life as we know it only exists because Ben takes that particular prescription, I thought, "Well, he'll be OK for a day without them." 

Have at thee, universe.

Saturday night, Ben couldn't get to sleep. Apparently these tiny little pills open a magical portal to that world where Hypnos and Morpheus--those wondrous Greek gods of sleep and dreams--await. No wonder they cost so much, right?

And I thought, well, that's frustrating. Now he's going to be tired in the morning.

He wasn't tired in the morning. Tired is what you feel when you get into bed at 2:00 am and have to get up at 7. Tired is what you feel after you mow the lawn in 100-degree heat and need to sit down for a while.

Ben was utterly debilitated. I tried to rouse him at the crack of 10 to get ready for church.  He moaned from atop his loft bed (the building of which was a major miscalculation on our part not only because it has given him the ability to kick through the ceiling in moments of rage, but also because I can't reach him without the assistance of a ladder).  I ignored the moans and became more insistent--"Ben, get up!"  Moans became cries.  Cries made me irritated.  "Ben--if you don't get up I will take away your iPod and laptop for the entire week!"  Cries became screams.

I told Ben I wouldn't fight with him, and I informed him that I had to take his brother over to the church and that when I got back, he'd better be up. I left. I came back. Ben was up.  Well, technically he was down. Down from the loft bed, down on the floor, curled up in the fetal position, screaming, panting, crying.  I was unimpressed (let's add cold-hearted to my list of qualities) and told him that this wasn't working, and he needed to put clothes on.

He did his best. In retrospect, he really did better than I could have expected considering he was exhausted and devoid of the medication that helps him stay so calm and focused.  His face was covered in red blotches, he couldn't stop crying, couldn't catch his breath from the uncontrolled sobs, but he was dressed.  And I thought, "It won't get worse than this."

Have at thee...

I had placed a bottle of Instant Breakfast on the counter for Ben, thoughtfully loosening the lid for him first, and instructed Ben to go drink it.  I assured him that he would feel better once he had. Ben went to the counter, grabbed the bottle, and proceeded to shake it.

The lid flew off, and in one of those moments where everything suddenly moves in slow-motion, Instant Breakfast was flying everywhere, and suddenly Ben was dripping in the sticky stuff--as were the counters, cupboards, and floor. I'm not sure "scream" accurately describes the sound he emitted at that point.   He was wet, he was sticky, he was exhausted, and his emotional regulator had definitely and entirely shut off at this point.

I did manage to strip off all his clothes, wipe him down with a wet towel (that went well...), replace the clothes with fresh ones, and still coax him out the door to church, but he only stayed for the first meeting and mostly with his head buried in my arms so I could cover his ears and eyes and shut out all stimuli.

At least we survived, right?  Except that I didn't refill his prescription yesterday, either, because it was Sunday. The ox was in the mire--I certainly should have run to Walmart to get more meds--but as I said earlier, I'm stupid, absent-minded, and lazy.   And cold-hearted. So, universe, have at thee.

Ben's home today from school. Drive by the house and get a good look at the Sword of Attila, embedded to the hilt in our roof.  I'm on my way to the pharmacy.

Adjustment and Perspective

Remember the "good old days," when all I had to worry about was whether Ben would have a catastrophic meltdown, punching, kicking, and screaming for an hour, or have to come home from school because he leapt out of his seat without provocation and punched a kid in the stomach?  Ah, how I miss those days.

This year has been exhausting. Maybe it's the change from elementary school to junior high. Maybe it's the new surge of testosterone that suddenly rages through every 12-year-old boy's body. I just don't know.  When the school year began, I got a phone call at least once or twice a day to report that Ben was in the office in the throes of misery which he could not define nor explain. He just cried, buried himself under pillows in the Special Ed Director's office, and demanded that I come and pick him up.  I didn't often go get him, but he also didn't often go back to class.

Now that the teachers and staff know him better, he spends more time in class (though once a day, at least, he is still in the office complaining about something), but often it is with his hood over his head, or his head buried in his arms on his desk, frequently still crying.  Today, Sunday, he was seated with the other young men at the front of the chapel getting ready to pass the Sacrament to the congregation when suddenly he stood up, returned to our pew, buried his head in my arms and cried for 20 minutes. His explanation?  He just suddenly felt upset.

And the tics are tougher to deal with, too.  Here's a new one: He is compelled to "mock lick" everything he picks up.  Well, I take that back. I think the "mock licking" is limited only to hard surfaces, like phones, tablets, books, dishes, rocks...  and what is "mock licking"? It is where he draws the object close to his lips, flicks his tongue in and out of his mouth a few times, and "almost" licks the object without actually touching it. I think sometimes he misjudges the distance and really does lick it, but usually it's only a close call.  A gross, close call.

Fairly recently, though--a couple months ago--I think he may have licked something he shouldn't have (feel free to say "ew..."), and he got a large canker sore on his tongue.  That wouldn't have been a problem for most people, but Ben turned that canker sore into a new tic:  tongue biting.  For almost two months straight he bit his tongue so hard and so often that it was a bleeding, cankered mess. Quite literally, the entire tip of his tongue was just a gaping, white hole, and the rest of it looked like an exploded minefield.  I took him to the doctor, who prescribed a mouthwash that he said might help (it didn't), but recommended I take him to the dentist.  I took him to the dentist who said he had heard of tongue-biting among Autistic children, but had no experience with it. He recommended I take Ben to an orthodontist to talk about making some kind of appliance that would stop him from making contact between his teeth and his tongue.  And all this time, Ben was in agony from the pain, and yet he couldn't stop biting. He cried every time he tried to eat, sleep, talk, or (not surprisingly) go to school.  Those were a miserable couple of months which finally resolved when I purchased him a nighttime mouthguard, and he wore it day and night, and bit down on it instead of on his tongue, which finally healed and then Ben didn't feel compelled to bite it anymore.

In the meantime, Ben barely passed his classes this semester (because he spends more time in the office or with his head down than actually engaged in class), and he passed those classes really only because his resource teachers have exerted Herculean effort to accommodate him while he "adjusts" to junior high life.

How long, exactly, does this "adjustment" take? Because I'm pretty sure that most adults are still trying to "adjust" to junior high. Heck--I'm still traumatized by junior high. There is no such thing as "adjusting" to junior high for even the most emotionally stable kids (not that I count myself among the emotionally stable, mind you), let alone a child with Autism.

I'm a problem-solver. I'm a fixer. It's a rare thing when I just don't know what to do. But I'll admit it: I'm at a loss.  It's tempting to just call it quits and homeschool him, except that neither Ben's nor my sanity will allow that, and I can't even get Ben to do 20 minutes of homework most days, let alone complete all his courses independently.

A friend of mine whose son also has Autism (and who also started junior high this year) has had to embrace a hard, painful reality this year that her son will likely not graduate from high school, will not go to college, and will not move into some lifelong professional career. He has not thrived in the mainstream junior high environment, and is now on a track that will allow him to obtain just a certificate of completion from high school (not graduation). His future probably includes learning some occupational skills and gaining basic employment down the road.  It has been a painful recognition for my friend, who has done everything humanly possible over these past 12 years for her son in terms of his education and skill development. Yet in the end, she is having to acknowledge that there are limits to the heights her son will reach.

Am I being naive in refusing to raise my own white flag? Am I setting Ben or myself up for failure and disappointment? Admittedly I lack any objectivity here, and I am not asserting some Galaxy Quest-like battle cry ("Never give up; never surrender!").  I won't even echo that revolutionary declaration that I have not yet begun to fight; I began to fight years ago.  But I'm battle-weary, and wondering how much longer this skirmish will last. I believe in him, and in the intellect and talent that lie within him. I believe we can weather this storm (apologies for the mixed metaphor there).  At what point do I surrender to limitations? Not yet, not here, not now.

All the same, I never thought I'd miss the days when adding a few new bruises to my collection was as hard as it ever really got.  I never thought I'd reflect fondly on days of drawers overturned in a furious rage amidst a squalor of swearing. Yet now those seem like the simple moments of raising a child with Autism.  And so, sweet perspective, I welcome thee.

Autism is Ruining My Life

I've never believed that my boys' autism was some kind of cosmic disaster. I don't think it is, and I've spent their lives trying to teach them that first, everyone has "stuff" to deal with, and that second, their particular set of challenges also comes with some advantages that we don't all have.

Joey, for example, has a gift for music that is rare and unique. It serves him well now that he's a member of the Lyceum Philharmonic Orchestra, and I think it brings him a great deal of personal satisfaction to boot.  Ben has an enviable memory, an acuity for understanding the inner workings of things, and a rare perspective on mortality that allows him to not get stuck in the moment-to-moment issues that arise.  I thought I'd done a pretty good job of helping them both feel confident in their strengths without getting mired down too much by their developmental, social, and emotional challenges.

And then as we were driving home from school yesterday, Ben uttered the sentence I never wanted to hear:  "Autism is ruining my life."

We recently "adopted" a foreign exchange student from Japan. He's living with us through the school year, and brings stories of exotic culture and food. Our oldest son Zach is currently serving a church mission in Japan, and our daughter is working towards leaving on a mission herself next summer to someplace that she hopes is more foreign and interesting than, say, Kansas.  Then again, it might be hard to be more strange than Kansas.

So Ben has been thinking about travel, and about doing something different and new. As we were driving, he asked me if I thought that when he turned 16 or 17, might he be able to be a foreign exchange student to another country, because he really wants to?

Honesty is the best policy, right?  I thought so when I replied, "Probably not, Ben. I think your autism would make it hard for you to go live in a different place, with food and customs you don't know, among strangers who don't know about some of the things you struggle with."

Cue the outburst:  Autism is ruining my life.

I went into my typical rhetoric about how his autism was a challenge sometimes, but that it was also a strength. I reminded him that we all have problems that we are working to overcome, and that his life didn't need to look like everyone else's life to be meaningful.

And then he told me that my problems weren't keeping me from living the life I wanted. He lamented that his admittedly deficit social skills prevented him from having friends, and his inability to adjust to change restricted his opportunities to try new things--to go out and embrace all the adventures that life has to offer.  I didn't know he was so self-aware. This is new.

And for the first time in 12 years, I really didn't know what to say.  He's absolutely right on all counts. Those are big problems, and he may or may not ever overcome them. My platitudes about universal struggle or compensating for the trials with an extra dose of strengths paled in comparison to the frustration and hurt that I heard in his voice as he expressed that it really wasn't fair that he couldn't be like "everyone else."

Most people see the world as their oyster, peeking open and offering untold treasures to whomever is willing to reach for them.  Yesterday I discovered that Ben's oyster is clamped tightly shut--at least, he feels like it is.

In some ways, I have to acknowledge that he's right, and that breaks my heart.  But I promise you this: we're going to use every knife, screwdriver, hammer, and explosive that we can lay our hands on to get Ben his pearl. If the world isn't opening to him as he wants, we'll open it for him.

Autism is not going to ruin his life.

And Then There Were Two.

The signs have always been there: Unusual, long-term obsessions with things like men with beards, vacuums, trains, the Titanic, Spiderman, Iron Man, and most recently, Freddie Mercury; extremely limited (and sometimes strange) food interests (for example, hot dogs with jelly, or subsisting almost solely on chicken nuggets and Ramen noodles for years); extreme difficulty connecting to his peers even in preschool and throughout elementary school. A rare acuity for recognizing music, and for hearing even the most subtle instrumental voices and harmonies buried within complex orchestral scores, being brought to tears by certain musical pieces even in infancy.  Tics, speech delays...it was all there.

Yet, in spite of the flashing red lights and every warning sign short of a billboard appearing in the front yard, in spite of having a second son who has had an Autism diagnosis since the age of 5, we missed the mark, and Joey carried a mishmash of other diagnoses throughout all of elementary school and junior high, ranging from anxiety, to Tourette Syndrome, to ADHD, to depression.

The problem is that he was just too smart. He was too good at coping, and adapting, and compensating for his struggles just enough that even when we had him tested during the 6th grade for psychological challenges, he dodged the "Autism" diagnosis somehow (I'll tell you how in a minute) and ended up with a list of other diagnoses instead.  But it couldn't last forever.  Finally, last spring, as school got harder and bullies got meaner, Joey couldn't cope and adapt his way out of his challenges any longer, and things fell apart for him, so severely and dangerously that we had to send him away to a wilderness treatment program, where he ended up staying for 101 days.

While he was there, we sent another psychologist up to do a new battery of testing, and finally embraced an accurate diagnosis:  Joey, like his younger brother Ben, has Autism.

So why did it take us 15 years to get Joey diagnosed?  In the years since Ben was diagnosed, I've talked to dozens of parents, and friends of parents, who have been told that their child (or their friend's child, or their grandchild...) might have autism, and invariably I hear this response:  We (or "our friends," or whoever it is...) don't want to have our child diagnosed with Autism, because we don't want our child to be labeled.

I think that is a noble sentiment. I really do.  But forgive me for being blunt and a bit harsh when I say this: it is also garbage. Here's why:

First, any child who truly has autism is already struggling.  The diagnosis won't suddenly cause a new problem; it will explain an ongoing one. If your child is in school, then I guarantee that he/she is not getting along with peers, is not succeeding in the traditional classroom, is experiencing some kind of academic deficits, is probably disrupting the learning environment in some way. If he/she is not in school yet, then the problem is happening in play group, or at church, or just among family members. But the problems are already emerging.  If you think your child is not already being labeled, you are delusional (again, I apologize for being harsh. This is intended to be a wake-up call).  And that label is being whispered among classmates, across dinner tables, to other mothers at playgroups, and during faculty meetings. That label may (sadly, tragically, but truly) include words like "Trouble-Maker," and "Problem-Child."

When Joey was in the 3rd or 4th grade, he came home sobbing one day because a couple of his so-called (and only) "friends" told him that their moms had said that they couldn't play with him anymore. I called one of these moms to see if this was true, and she told me that they had decided that they weren't going to let their kids play with Joey anymore because they just didn't think he was a very good kid. She wouldn't even explain to me why, or tell me if anything specific had happened that I could talk to Joey about. They had just unilaterally decided that my child was "bad," and that their "good" children shouldn't be unduly influenced by him.  My child wasn't bad. He had autism. How sad that I couldn't explain this then (and yes, I still whisper unkind words in her general direction whenever I see her at community functions or drive past her house. What kind of judgmental-self-righteous-waste-of-human-flesh does that to a little child?? I really need to work on forgiveness. Maybe tomorrow).

Today, where 1 in 68 children across the United States (and that number is 1 in 54 in Utah) are diagnosed with Autism, and where extraordinary people like Temple Grandin and Carly Fleischmann have helped to make such advances in Autism awareness;  where the diagnostic criteria for Autism really do make it clear that Autism is a broad spectrum of both struggles AND strengths, the "label" of Autism is far different from what is was 50, 30, or even 15 years ago. Today it is a "label" that invites compassion, patience, and understanding.

Second, that diagnosis of Autism is the key to services that your child desperately needs. Without it, you may get some help in the form of a 504 plan (a few educational accommodations for extra time on tests, or sitting closer to the teacher) if you can get someone to slap together some other diagnosis for ADHD or whatever else you think might be better than having Autism.  But that won't help your child. My heart sinks when I consider that with a proper diagnosis in 6th grade (or even earlier), Joey could have accessed resources for social skills, behavioral skills, psychological support, and anything else that popped up over the years. Instead, he was on his own. And eventually he crashed.

Let me tell you this: You don't EVER want to get to the point where you are so desperate to save your child's life that you have to send him away to a wilderness treatment program. That first night, when you know he is on a dark, cold mountain, crawling into a sleeping bag, not filling his tummy with the snack he has eaten every single night since he was five (because routine is everything to him), not being kissed goodnight, frightened and alone among strangers, that night, you will not be able to get into your own warm bed. You won't get into your own bed for days.  You will ache with worry, wondering what you could have done differently to save him from being sent away. In Joey's case, maybe we could have gotten him diagnosed earlier so that he could have gotten the support and help he really needed.

Third, if you avoid the "label" of Autism, you are sending a message to your child that Autism is something you are ashamed of, and something you are trying to avoid. Look: If your child has Autism, then he/she has Autism. Avoiding it won't change it.  If you see a cancer growing on your skin, you can avoid going to the doctor for as long as you want, telling yourself that as long as you don't go, then you don't have to know that you have cancer. But guess what? You still have cancer, and eventually you are going to have to treat it.

If your child has the signs and symptoms of Autism, then the time will come, sooner or later, that he/she is going to be diagnosed. My husband--a clinical psychologist who specializes in psychological testing--has diagnosed many, many adolescents and even adults with Autism much later in life than they should have been diagnosed.  Why? There are plenty of reasons. Some slip through the proverbial cracks as children. Some have been misdiagnosed earlier in life. And some had parents who just didn't want to know. But eventually the diagnosis always comes.  Do you really want to plant a message that when that diagnosis comes, you will be disappointed and ashamed?

Here's a thought: Face it head-on. Embrace it for what it is. The sooner you do, and the sooner you access help and services, the better your child will adjust, and adapt, and thrive.

And here is where I become the proverbial pot calling the kettle black. Here is where I speak from experience, as one who knows too well.  Why wasn't Joey diagnosed when he should have been? Primarily because we didn't want to know. We didn't want two sons with Autism. We couldn't believe that was possible. And so we convinced the first psychologist who tested Joey that Joey was much different from our other son who did have Autism, and therefore Joey must have something different. In fact, we convinced ourselves that he must have something different. It couldn't be true. We could not have been more closed-minded.

It's true that our boys are different. They have different deficits and different strengths. Autism is a spectrum. It looks different for every child.  But the facts are irrefutable, and knowing is so much better than wishing for something different.  Finally Joey is getting the help and support he has always needed.

Autism is not his label. It is how he is learning to finally live his life. And after 15 years, it's a wonderful thing to see.

Unexpected Storms and a Tic-ing Time Bomb

Stardate 2015.7 (or in the American calendar, that would be July, 2015). We're supposed to be having a drought. Not enough snow last winter, they say. And yet all through May, it never stopped raining. It seemed like every week there was another storm, and another, and don't get me wrong; I don't mind the rain at all. At least, not the stuff falling from the sky onto the grass outside.

But the storms of life are wearing us a little thin around our home these days.  Ben is feeling the brunt of them.  Here's how I know:

Every week, I take him to cello lessons.  He's been playing since last October, and though admittedly I'm a biased observer, I think he's pretty good. His teacher tells me he has a gift--an ear for the sound of the cello, and an unique ability to remember the music and reproduce it. Besides that, Ben will tell you he was born with "cello hands"--long, strong fingers perfectly constructed to press down the strings on the cello's fingerboard.  Look--I don't care if he has a gift or if he has natural "cello hands." I only care that he is holding a musical instrument and producing music, which affords him an opportunity to express emotion.  Anytime he gets that opportunity, we're going to take it.

So a few weeks ago, right in the middle of his lesson, doing nothing in particular except fiddling through the middle of a relatively benign new song, Ben suddenly slumped back in his chair, dropped his cello down against his chest with one hand, dangled his bow down to the floor with his other hand, and burst into tears.  I was sitting on the couch across from him, and at first I wasn't quite sure what was happening, so I said, "Ben, what's going on, Buddy?"  He just looked at me with the most perplexed expression on his face, while tears streamed down his cheeks. His teacher was as confused as I was.

I hurried to his side and lifted his cello off him, which his teacher immediately took from me in turn. I cradled Ben's head in my hands and just held him for a minute, and then the moment passed and he was fine again. He took his cello back, gave me a quick upward twist of his mouth that resembled something like a smile, and went right back to the song he had been learning.

Okay....

Yesterday we went to a movie as a family, and the tics started up. This has been a recurrent theme for the past couple months...every time we take Ben to a movie, he gets into that theater, sits down, and begins this terrible, awful, really unsettling snorting sound--something between a sniff and a snore (more on the snore side).  When the theater is relatively empty, this is not much of a problem except that it drives the family crazy. But yesterday the theater was completely full--every last seat filled with moviegoers excited to watch the adventures of Ant Man unfold.  And it began.  One loud snort, then again, and again, and again. Soon the guy in front of us was turning around, glaring at me (as if I was supposed to control my child, and as irritated as I was at his intolerance, I couldn't blame him). I whispered to Ben to stop, and he let out this [not quiet] whimper, buried his head in his hands, and emitted several more snorts.

"Ben!" I whispered, even more urgently as the man ahead of us shot us yet another even less patient glare. This time Ben turned completely backwards in his seat and began crying, all the while snorting and sniffing. The impatient man and his wife rose and moved to unoccupied seats at the front of the theater. Another snort. A man two rows ahead of us gave me a look. I'm a little embarrassed that I tried to coax Ben through almost an hour of the movie, distracting him with whispered conversation, pulling him onto my lap...nothing worked and the snorting continued to escalate until Ben begged to leave, crying and pleading that he couldn't control what was happening. I told my husband that I was taking Ben home, scooped up our things and left.  I'm surprised we didn't receive some applause from our surrounding seatmates upon our departure.

As soon as we were in the lobby, the snorting stopped, as if it had never happened.  As we walked to the car, I asked Ben what was going on. He doesn't know. The theater is loud, and the screen is bright and overwhelming, I guess. It's too much stimulation.  But this tic is relatively recent and getting worse every time we go to the theater now.  Ben really wants to figure out a solution before Star Wars comes out in December. Until then, I think our movie days are over.

I guess some of this is just about all the change that Ben is experiencing. I haven't mentioned that he didn't get into American Heritage Academy, but we found a school about 20 minute away--a charter school with a Space Center (one of Ben's "things") that has a heavy emphasis on technology and fine arts. We feel like this is a great fit for Ben, and as it is a 7th - 12th grade school, Ben's brother Joey will also be attending.  So, new school, birthday (Ben turned 12 last week, which means some big changes for him within our religion as he became a "Deacon" and will take on some responsibilities within the church now), Ben's oldest brother away on a church mission, Ben's sister leaving for college in a few weeks...everything is unsettled.

It's storming, and all the change and uncertainty is frightening and confusing--hard to make sense of for most of us, really. But the chaos turns Ben into a tic-ing time bomb, I guess.  And I need to figure out how to diffuse him...and soon.

Stripping Down and Starting Over

It's been more than a year since I posted on Ben's blog. We've been doing fine. There hasn't been much to report. Once you get into a rhythm, you just stick with it, and that's where we've been for the last year or so. During the school year, it looks exactly (and I mean, exactly) like this: I get Ben up, he takes a shower, puts on all clothing except pants and shoes, drinks a Strawberry Instant Breakfast and takes his medication, watches t.v. for 1/2 hour, puts on his pants and shoes, slings his book bag over his shoulder, and off he goes to school. Even dropping him off includes certain procedures and rituals of stopping, saying routine words, and waving at just the right moment.  After school, every day has its own routine, too, but there is a routine. And so long as we stick to it, life is pretty normal.

But things are changing now.  For starters, we are a month away from finishing elementary school, and figuring out where Ben will go to Junior High.  The very term "Junior High" churns my stomach. For "normal" children..."neuro-typical" children...Junior High is essentially just a cesspool of raging hormones, social turmoil, and interpersonal drama. Throw in a kid with autism, and while there will be some children who stick up for him, there will be plenty of others who, because of their own limited and seriously lacking self-identify and self-esteem, will see him as easy prey. I have no doubt that he will be bullied and mocked. And I know how Ben handles being bullied and mocked: It typically involves swear words, physical retaliation, and once home, an immediate emotional meltdown accompanied by a strip down to nakedness so that he can climb into bed under his autism blanket and spend the rest of the day with his headphones on watching something on his iPod.  Granted, this coping strategy is considerably better than emptying all his drawers onto his floor, shattering dishes, and spitting and punching me or anyone else who comes into the room to intervene...I am counting my blessings for the improvements he's made in that regard.  But that would still be a pretty hard way to spend the next three years.

In light of that potential outcome, we are desperately trying to get Ben into a private school next year called "American Heritage Academy."  It's expensive, but a cost I will willingly pay if they will accept him.  Here are the caveats:  First, he has to demonstrate that he can function within the mainstream classrooms, because they don't offer resource or special education classes.  The teachers at the elementary school tell me that Ben is perfectly capable of succeeding--academically, at least--in mainstream environments. In fact, I got a phone call from the resource teacher just two days ago who said that she just completed Ben's final testing, and he tested "off the charts" in both math and writing--both areas where he had been working in the resource room on his IEP. She suggested that we talk about dropping his IEP as we move into Junior High and consider just giving Ben a 504 instead.  [For those of you don't know the difference, an IEP is a state-funded plan that provides for resources such as speech therapy, counseling, resource and special education help, etc., where a 504 includes no funding but allows a child to receive some accommodations such as extra time on tests, sitting closer to the teacher, and so forth. Both are technically "legally binding," though a 504 has very little "bite" when compared to an IEP. Children with certain diagnoses are given an IEP (including autism and other learning disabilities); children with other diagnoses (like ADD, for example) are usually only given a 504.]

Let me digress for a minute to explode about that suggestion.  ARE YOU KIDDING ME???  She wants to strip away the only safety net that we have for this autistic child--the only thing that gives us access to services that allow him to have small classes, to work with the psychologist, to get extra help--and move him to a 504 where he essentially will get NO services whatsoever, but could get a few little accommodations if he needed them?  The only reason he has finally begun to succeed after all these years is because of his IEP. Now, moving into the cesspool, she wants to yank that out from beneath him with a pat on the head and a "Good luck--go get 'em, Tiger!"? Look. I can understand that he doesn't need to be in resource for math and writing. Great. But he is still far below his peers socially and behaviorally. He still needs an IEP. He still needs access to other services (social skills support, small group environments, etc.), even if they aren't academic. I will fight all the way to the White House to hold onto his IEP as we move into Junior High if that is necessary.  What in the high holy heavens could she possibly be thinking?  Ok. End of rant. Deep breath.

At any rate, if we get into American Heritage, whether he has an IEP or a 504 becomes a moot point (since they don't offer special education anyway), except that if he has an IEP, there is state funding allocated for the IEP that we can access and apply to his tuition at American Heritage. It's not much...a pittance, really...but every bit helps, right?  Besides, it takes more than Valley View saying Ben could keep up in the mainstream classroom. He actually has to prove it by doing some testing and by demonstrating that he is academically qualified to perform at a 7th grade level.  So here's the big question: does the public school system version of 6th/7th grade readiness match what American Heritage is going to test him at and expect him to be at? I'm really anxious about that, especially since he does need a few accommodations still for handwriting (he has a diagnosed dysgraphia--handwriting disability) and math facts to keep up.  Testing is on May 8th. Fingers and toes crossed.

The bigger issue, and the one that really scares me, is that even if Ben passes the testing, American Heritage still has to decide that Ben is a "good fit" for the school. We filled out all kinds of paperwork, including a long series of paragraphs that Ben had to write himself, and Ben had to go in for an interview that I thought he did a good job with, except that...well...he has autism. So he talks with a unique affect, and he has unique tics that he does with his throat and his face. It's clear that he would be "different" from the kids there who don't have autism.  Will they discriminate against him because of his autism? Will they not want him because he's different? Will they feel like he is just too much work for their teachers, or that he might be too distracting for the other students? These aren't issues we've ever had to face before.

It's probably not the last time we'll have to face them, though. Ben will come up against these kinds of questions every time he applies for a job, or asks a girl out on a date when he gets older. So times are a-changing. As Ben gets older, some of the more real and long-term implications of having autism are becoming evident, and while we don't have to cross any bridges just yet, it's a little strange to see them begin to dot the horizon.  Ben isn't the only one who likes the routine. I like it, too. I don't want it to change.

Great. Now I Have Guilt!

Toy Story fans everywhere will remember that iconic film moment when Rex the toy dinosaur, upon finding out that he has falsely accused Woody of trying to get rid of Buzz Lightyear, cries out, "Great. Now I have guilt!"  I've been relating to that sentiment a lot lately, and I'm not sure what to do about it.


Several months ago, my husband Chris took a position with a therapeutic wilderness program for troubled youth.  I'm sure most people know about these programs where youth who just can't function safely in their own home environments (due to drug abuse and other adolescent stupidity) are taken to a kind of long-term camping experience, stripped of all their personal belongings and entitlements, and taught to value the blessings they have in their lives.

Well, one or two months ago, Ben had fallen into one of his catastrophic, hurricane-force meltdowns about who-knows-what.  The meltdown began in the living room where siblings and friends-of-siblings were watching t.v.  That meant that my first order of business was to get Ben out of that room, so that no one would be punched, kicked, spat upon, or showered with a torrent of obscenities that only Ben can spew when he is completely out of control.

Unfortunately, Ben is much bigger now than he used to be.  Where I used to be able to easily pick him up and haul his flailing body anywhere I needed him to be, I quickly discovered that getting him up the stairs and into his own bedroom required a certain Herculean strength that I simply don't possess.  And so the process of "escorting" Ben up the stairs involved more of a lift-and-push process that left Ben free to kick and punch with terrible violence.  By the time I got him up two sets of stairs and into his room, I was dripping with spit and sweat, bleeding from scratches down my hands and arms, and aching from the dozens of punches that would eventually become bruises all over my body.

As I heaved and hauled Ben up those stairs, I warned him that he had to stop hurting me.  I warned him that if he continued to hurt people in our family, then he would no longer be able to live in our home because it would be too dangerous.  I reminded him that dad works in one such place, and that it would not be hard to take him there at any time.  I said these things for two reasons.  The first was that I was desperate to make him stop hurting me, and at that moment I would have said anything I needed to.  The second reason was that I was serious.  I have heard many, many stories of autistic children who eventually have to live in treatment facilities of various kinds because the meltdowns have become too violent and too dangerous for that child to continue living at home.

At the time of the meltdown and these threats, I didn't think I was getting through.  He didn't respond to me (he was too busy screaming in a high-pitched, primitive shriek peppered with very coherent swear words) and he didn't stop his violence.  Once in his room (where I held the door closed for several minutes while he emptied his closet of all his belongings and threw them at the door), the meltdown continued in spite of my continued warnings that he would not be able to stay if he kept up this behavior.

Eventually (when objects stopped hitting the door) I sat down on the top steps of the hallway, put my head down in my arms, and just waited until all the screaming and noises from his room subsided.  They always eventually do.

This time, after they stopped, Ben came out of his room, sat down next  to me, and very quietly asked, "So, do I have to leave the family tonight?" And then he erupted into the most heart-wrenching sobs I have ever heard from him.  And my heart broke.

A few weeks ago he was listening to me relate this experience to my sisters, and he broke into tears again and said, "I feel sad about that even if we talk about it!"

So here's where the guilt comes in:  Since that day that this meltdown happened and I made that threat, Ben has had almost NO meltdowns.  At least, none at that Pompeian level of violence that scares me so much.  It's almost like that terrible, horrible, gut-wrenching threat that still brings him to tears actually got through to him.  But how on earth could I ever play that card again, knowing that it reduces him to sobs of sorrow?

On the other hand, isn't this exactly what I wanted?  Didn't I want to do whatever I had to do to keep him from hurting us so that he can continue to live here and be a daily part of our family?  I can say with certainty that it would take an awful lot for me to send him away to a treatment facility.  I will tolerate bruises and broken bones if by so doing, he continues to live and grow in our family.  But at some point, whatever that point ends up being, I would have to say that it was too much.

So...did I win, or did I lose?  Did he win or lose?  I just don't know.  I don't know if the means justified the end in this scenario.

All I know is that I have guilt.

Too Much of a Good Thing?

It's Wednesday, which I only remember because today was Autism Social Skills group--or do I remember that Social Skills group is today because it's Wednesday? The chicken and the egg are often confused these days....

Ben emerged from group today with a green left hand, from wrist to fingertips.  Green and glittered, with a feather glued thickly to the center of his palm. He claimed it was his Epic Zombie Mini-Sword hand. In response, I raised my eyebrows momentarily, sighed, and shook my head while wondering whether all that green paint would come off his hand, shirt, and jeans when we got home...or whether it might instead be smeared all over the leather seats of the Suburban ere we ever got out of the parking lot.

Before my Zombie-handed autistic child bounded out of the group play room, I had just been discussing summer plans with a couple of the other moms.  The options for therapeutic interventions are apparently limitless:  Therapeutic horseback riding, social skills, functional skills, adaptive sports, ABA therapy groups...not to mention the "usual" summer things like swimming lessons, sports, and music.  A few of the moms are doing many--most--of these things: Something (or some things--plural) every day.

Here's what I want to do this summer:  nothing. I am tired. Just dragging Ben through the school year with its attendant challenges of homework, behavioral programs, IEP meetings, horseback riding, and social skills group, has been exhausting.  I gave up on Cub Scouts months ago. Ben doesn't want to go anywhere, ever. If he could ensconce himself in the computer room 24-hours a day without ever speaking to another soul, he'd be happy. Nevertheless, all year long, in the name of looking out for Ben's best interests, I have waged the daily battles to get him out the door.

I don't know if I can muster enough energy to do it all summer long, too.

But one of the other moms I was talking to this afternoon said, "I just feel guilty about not signing [her child] up for as many programs as I can. I mean, I have to do everything I can to help him, right?"

Right.  Yes.  Leave no stone unturned. Make hay while the sun shines.  Grab the tiger by the tail. Stand and deliver. Scooby-Dooby-Doo, where are you? (Yeah...that one doesn't work here, but I was on a roll...)

But this seems like a fair question: how much is enough? Is there such a thing as "too much" of a good thing?

I am not taking the boys to horseback riding this summer. That was decided the moment I suggested to Ben that I was thinking about not doing horseback riding this summer. Expressing my thought process to Ben is apparently the moral equivalent of making a promise.

I'm leaning toward the functional skills group, where the kids will purportedly be taught such things as folding and putting away clothing, making a sandwich, crossing a street safely, and vacuuming. I'll fight the battle to get Ben out the door for skills like that.

But maybe that's enough, huh? Just one thing? I might throw some swimming lessons in there, or maybe not.  I just peeked into a few bedrooms in the house, and it turns out I have three other kids who also have some plans for the summer. They might hope that mom is around once in a while to drive the taxi, make a few lunches, and apply sunscreen.

When we get to the end of time, will I look back on this summer and think, "If only I had taken Ben to a few more groups, would he have lived a better life?" I just don't know.

Maybe the Epic-Zombie-Mini-Sword hand has magical future-predicting powers.  Before we wash off the green and glitter, I may request a reading. Go out on a limb. Carpe Diem. Insert other relevant idiom here.

Raising the White Flag

I love writing about Ben, and about our experiences with him. I love the funny things he says and does, like when he told me that he had two nightmares that were the same, except "the graphics were different" in the second version. I love that he always asks, "How much did that cost?" when someone shows him something new. I love his fascination for the mechanics of things, and his unabashed conversations, such as the one he had with my sister a year or so ago when shortly after I had a hysterectomy, he spontaneously asked her, "So Auntie Jen, have you also had your uterus removed?"

And yet, no matter how much I love him, there are times (today is one) when I want to hoist a white flag over my head, drag myself up and over the hilly battlefield upon which the ceaseless scuffles of Autism are fought every day, and collapse at the feet of whoever might actually have the power to accept my unconditional surrender and plea for mercy.

There are times (today is one) where I just don't think I can do this anymore. Lately I've been envying parents who never wake up in the morning wondering how many times their child will melt into uncontrollable fits of screaming, kicking, punching, and spitting. They never have to decide when might be the appropriate time to sit down with the cub scout troop and explain that their fellow Wolf isn't just a weird, impatient, socially awkward person but that he has a disability.  There are parents who don't think twice about loading the kids into the car for an outing to a park, store, or restaurant. 

There are times (today is one) where I wonder if I am really just not doing this parenting thing right at all.  Those same parents who don't think twice about taking their kids to church or swimming lessons are also generally respected as the final authority in the home. Sure, other kids backtalk and argue; of course other kids fight with each other and even with their parents.  But most of those kids don't leave bruises and bite marks.  I've tried every trick in the book: consequences, punishments, rewards, sticker charts, money in the jar, and outright begging for better behavior.  Nothing works...nothing.  When Ben gets upset, nothing matters.  He just explodes.  And I can either put him in his room and hope he doesn't punch too many holes in walls or kick out the window, or I can try to physically hold onto him and brace myself for the fury.

Those meltdowns are unbearable, largely because they are completely void of all reason and logic.  I can't talk Ben off the ledge, so to speak, while he's in the first phases of the meltdown.  All I can do is wait until finally, in spite of the ongoing punches and kicks, the bites and screams and spit, I see the look in Ben's eyes change from fury to terror.  There always comes a point where he realizes that he is out of control but just can't stop.  And when that moment comes (and sometimes it takes hours to get there), I can finally scoop him into my arms and start rocking him and whispering while the punches get softer and softer and finally subside altogether and the Ben I adore comes back to me.

But he's nine years old now.  And this has been the worst summer of meltdowns he's ever had.  He's bigger and stronger than ever, and there are times (today is one) when I wonder what the future holds for this child.  Will he ever gain more appropriate coping skills?  Will he ever have the ability to move away to college or to a job?  Will he be able to continue living in the house if he doesn't learn to somehow mitigate those outbursts so that they aren't scary and harmful to people around him? 

I'm driving myself crazy with the questions, and with the lack of answers.

And today, bruised and exhausted, I surrender.

On Friendship

Throughout his life, when asked, Ben has always said that he has friends. But that is only because he doesn't really understand the difference between knowing people, and being friends with people.  I think he has always assumed that if he knows someone's name, that means he is friends with that person.  However, he has never been invited to another child's house to play, never been invited to a birthday party, and never had any interest in inviting anyone over to our house for a play date, either.  In fact, he has always been quite content to play alone in his room or at the computer (except for the occasional joint activity with a sibling, and only if the sibling is doing something that Ben really wants to do).

But suddenly, something has changed.  Ben got into the car last week after school and as we were driving home he said, "Mom, me and Ozzie kind of made a deal that I can go to his house to play at 3:30."  Not sure I had heard him correctly, I repeated what he had said and then asked, "Did Ozzie ask his mom or dad if it's OK for you to come over and play?"  The answer was no, so I explained that usually moms and dads must be consulted before arranging a play date.  Ben responded, "Oh," and then didn't say another word on the rest of the drive home.

Clutching hopefully at this opportunity, though, when we got home I told Ben he should call Ozzie and have him check with his parents about playing together.  I coached Ben as to what he should say when someone answered the phone, then dialed the number, handed him the phone, and held my breath.  In a matter of seconds I could hear Ozzie's dad pick up on the other end of the line.  Ben asked if Ozzie was home, to which his dad responded that he was not.  Ben said, "Oh."  And nothing more. After all, this wasn't the script we had rehearsed. Just when I was sure that the conversation would end rather abruptly, Ozzie's dad took the lead, told Ben that Ozzie would be home at 4:30, and then instructed him to come over at that time.  Ben said OK, hung up the phone, and ran downstairs to play on the computer while the enormity of what had just happened washed over me.  Ben was going to play with a friend!

Then the questions started: Should I call the dad back and let him know that Ben has autism?  Does he already know? Will Ben know how to play with another child appropriately?  What happens if Ben gets upset?  What if Ben has a meltdown there at the friend's house?

In the end, I decided to not make too big a deal out of the play date.  I drove Ben to Ozzie's house, told him I'd be back in about an hour, and then encouraged him to get out of the car and go ring the doorbell.  Ben hesitated for only a second, and then as he emerged from the car, Ozzie opened the front door and Ben ran inside. As the door closed behind the two boys I looked over at my daughter, who had come along just to witness the miracle with me, and she said with a mix of amazement and reverence, "Ben is playing at a friend's house!"

The play date went just fine: no meltdowns, and Ben said he had a good time.  The next day, Ben got into the car and said, "Ozzie wants me to come over and play again, but I really don't feel like it."  I was disappointed and feared that the "friend" phase had ended as quickly as it had begun.  But there have been two additional play dates since that time--another at Ozzie's house that migrated to our house before the evening was over, and today, a third encounter.

I can't help but wonder:  What does the future hold for my little boy?  Will he continue to be friends with Ozzie? Will he develop other friendships that are mutually satisfying for both Ben and his friends?  Last week, my daughter Izzy told me that a boy at her junior high school--a boy with autism--had invited several people to his birthday party.  On the appointed night, no one showed up and the boy and his mom ate the cake together, alone.  My heart broke for that family.

But then my daughter told me that because they all felt so bad about what happened, they had planned a big surprise party at the park for the boy, wherein a couple dozen kids from the junior high met at the park and then began singing "Happy Birthday" as loudly as they could when the boy arrived and got out of his car.  Izzy reported that he had an enormous smile on his face as he ran across the field toward the singing teens, excited to be remembered and included.  I can just picture it, and I swell with emotion at the image.

Will Ben have true friends as he gets older--the kind that show up for parties and invite Ben to be a part of their activities?  And if not, will he have peers who support him and love him enough to reach out to him when he is disappointed and alone?  I'm so proud of my daughter and of her friends who went out of their way to embrace their classmate.  I think there is a special place in heaven for kids like that.  And, as the mother of a child who might be alone someday, there is a tender place in my heart for those kids, too.

What If...and What Is

We've been giving a lot of thought lately to Ben's future. I don't mean the long-term dreams of most parents for their kids, such as dating, driving, college, and marriage; what is on our minds is elementary school, and then junior high, and Ben's ability to successfully navigate both. He is still doing well in a mainstream 3rd grade classroom, except for a few issues with spelling and handwriting, but as classes get harder and expectations get higher, we are trying to plan ahead to accommodate his needs.

Plan one was some therapeutic horseback riding lessons. He's been going to a place called "Courage Reins" for about three months now, and the program is impressive. With the help of volunteers (Ben's big sister Izzy is a volunteer) and staff who have training in working with special needs kids, Ben grooms his horse every week (brushes his horse down and picks the hooves), saddles him, and then leads him into the arena to ride. In the process he is learning how to follow instructions, develop gross and fine motor skills, build core body strength, and gain confidence. I'm including some pictures on this blog that I took during a lesson.

One day the teacher asked the kids to let go of the reins and stand in their stirrups while the "lead walkers" led the horses around the arena. She asked the kids if this was hard, and Ben called back, "It's a little bit scary AND a little bit fun!" That sounds about right.

Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).

Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.

I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.

And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was so...final. I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.

Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.

But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.

Doors and Damage Control

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

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

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

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

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

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

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

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

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

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

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

To Medicate, or Not To Medicate?

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...

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

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

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

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

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

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


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

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

A Mile in My Shoes

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

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

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

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

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

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

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

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

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

Out with the Old...

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

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.