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.