Monday, December 5, 2011

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.

Wednesday, July 20, 2011

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.

Saturday, May 7, 2011

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?

Friday, February 4, 2011

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.

Tuesday, January 25, 2011

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.