Day 11

Here's what my arm looks like now:




You can barely see the remnant of the old bruises. Looking good!

Nick is so very happy. The medicine seems to have calmed his over-active sensory system. Today I vacuumed and he didn't run to hide in his room. May seem like such a simple thing, but for Nick it is huge.

Next week I'm going to try outings to places that stressed Nick out just a few weeks ago, like the lobby of Noah's camp. I think he's ready. Here's to hoping that the medicine makes those unbearable places bearable!

Thank you, all of you, for your support as we've opened this new chapter. I'm humbled by the hundreds of you reading and encouraging us. You strengthen me.

Day Four

Here's my arm on Day Four. Noah used to say this collection of bruises looked like a smiley face because it had two big bruises for eyes, a big bruise for a nose, and several smaller bruises in a crescent shape for a mouth (compare to Day One picture). The mouth is gone!

Day Three

Today I slept in. Today I painted my toenails. Today I wrote three pages, finishing a chapter. Today I--most shocking of all--took a nap.

Freakish things like this just *don't* happen in my world. Ever.

Nick had a good day. A wonderfully uneventful day spent playing, sitting up against mom on the couch, reading books, and eating.

Ahhh.

Nick is calmer, more content. But he's still Nick. Retaining his "Nickness" is something I was thinking a lot about today when I was writing. I was working on a passage about Ari Ne’eman and the rhetoric of war in the autism debate. On one side we have Ne'eman speaking of his concern that "curing" autism is a form of genocide, and on the other side we have Jenny McCarthy and Autism Speaks waging war on autism. I know that by choosing to medicate Nicholas that I've jumped into a battlefield.


I don't want to erase who Nicholas is. His autism is part of him and it has a unique beauty. I love the way he gets things he's interested in right in front of his eyes and deeply examines them. I love that he wants to drink in every sensory experience far more deeply than most of us ever imagined possible.


But I also like that during the past two days it's been my eyes that he's been drawing close to his and absorbing every minute detail. I like that he'll squeeze me to get the sensory input that he needs, but not squeeze so hard that it hurts.  


Ne'eman says we should focus on quality of life instead of cure, and I hoping my choices will do just that for Nick, give him the quality of life he deserves. 

Day Two

It's the second day of resperidone, and again we have a dramatic decrease in behaviors. The only aggression I saw today was when Nick was looking over his brother's shoulder, excitedly watching him play a video game, and something set him off. Maybe Noah had shoved him away or something, which annoyed Nick--you know how brothers can be. Whatever caused, it, Nick tried to pinch his brother, but he did calm quickly after I intervened.

Waking up from his long summer's nap. 

What we did see today was a side-effect: drowsiness. Nick had his morning dose and about two hours later he climbed into bed.

He slept for almost five hours.

And this is a kid who never, ever naps.

I had to cancel two therapy session because I couldn't get him to wake up. I laid down with him on and off during the five hours, in part because I was keeping an eye on how he was doing and in part because, as Joe said when he came into the room to check on us, "You never get to do this." Nick loves to be on my lap, but   he's so squirmy that I never get to gently snuggle him like most moms get to snuggle their babies.

We'll see if he sleeps tonight--my guess is no!

Hope

As I wrote on Sunday, Nick has been falling apart. Of course, "falling apart" is putting it oh so mildly.

And so I scheduled an appointment with his pediatrician. We have, beyond a doubt, the most amazing pediatrician in the world. Our old pediatrician was afraid of the kids and would walk into the room, quickly do his exam, and run out. It would've been comical if it hadn't been so frustrating. But Dr. Miller, she adores the boys and understands them. Her face brightens during our appointments and she always tells me that seeing Nick makes her day. She's awesome.

I showed her my bruises. I cried a little and she gave me tissues. She was beyond reassuring. "You are an incredible mother. Every time I see you I'm amazed by you. You have so much to manage, and you do it all glamorously. I wouldn't be able to do what you do."

We talked about options for medications, and rather than just throwing a prescription at him, she wanted to research and ask doctors who specialized in autism what the best course of treatment would be. "I don't want to harm him by trying to help him," she said. I was grateful for that; our old pediatrician blindly wrote prescriptions, with some horrific consequences.

She called later and told me that after conferring with colleagues she thought the best course of action was to get me into see a developmental pediatrician at the Melmed Center.

The Melmed Center is one of the premiere autism treatment centers in the nation. When Nick was two and we were living in Tucson, I drove the two hours to get Nick his initial diagnosis from the Melmed Center. They are incredible at what they do, which means they are busy.

Their first available appointments are in November.

Our awesome pediatrician called them and was able to get us an appointment for Monday.

The doctor at the Melmed Center was in awe: "I see mothers with bruises all the time, but in my ten years here I've never seen anything like that before." Randomly throughout the appointment she would stop and say things like, "he did all of that?" Do I get a trophy for Most Astounding Bruises? Because that would rule.

A thorough two hour appointment, and the result was this: a prescription for risperidone.

Risperidone, a medicine long-used for other illnesses, was approved as a treatment for tantrums, aggression, or self-injurious behavior in children with autism in 2007. Our doctor at the Melmed Center was part of the trial conducted by SAARC that led to its approval as a treatment for autism, so she really knows her stuff when it comes to this drug. Research shows a 69% improvement in irritability and aggression. There are some side effects, but the main one--weight gain--is something Nick really, really needs, so it's actually a bonus.

Nick had his first dose today, and even with that first dose, he's changed. Calm. Happy. He's not zoned out, as I was afraid he would be, but rather he is alert and engaged. Not a single pinch since he took the first dose, and that after a morning where he was so agitated that I called to cancel his speech appointment because I didn't want him to maul his therapist. There's an almost eerie silence--I'm so used to screams that it seems wrong when I don't hear them.


Medicating Nick was not something I did lightly. It's taken me a long time to get this point. I did not do it for me--I did it for Nick's quality of life. His fears, and the aggression that stems from them, are limiting his happiness and what he can do in life. I want to see him be able to go to a camp for children with disabilities and not get kicked out the first day because the staff can't handle him. I want him to be able to go to the store and not be petrified of the loud burst of air-conditioned cool that hits him as soon at the automatic doors slide open. I want him to have a full life. I know it's not a panacea, and I know that research says behaviors return as soon as the child stops taking risperidone, but it will give him a chance to feel at peace right now, for the first time since toddlerhood. 


I want to track the effectiveness of the medication, and I figured the best indicator would be my arms. So I'm going to take pictures of them every day so that I can see, literally, how effective the medicine is over time. Here's our baseline, Day 1:

    

Nick's Day 1 smile 

Summer, Summer, Summer, It's Like a Merry-Go-Round that Spins So Erratically You Get Motion Sick

I was sobbing at the boys' therapy clinic Thursday. Sobbing so much that I kept making these snorting sounds through my nose, noises that were so loud and silly-sounding that I wanted to laugh at my hysterical cry-style.

In high school I was taken with Longfellow's verses. I still remember sitting in my American Studies class in Nevada, feeling the spark of awe as we studied his poems. Such simplicity, yet such poignancy.

One of my favorites was "The Tide Rises, The Tide Falls." I felt the rhythm of the waves as I read the poem (but in a good way--not in the awful way you feel the waves in Crane's "The Open Boat" and eventually want to stab yourself in the eyes because you don't want to read another sentence about the painfully repetitive tide). Longfellow captures the ebb and flow that is life:

The tide rises, the tide falls,
The twilight darkens, the curlew calls;
Along the sea-sands damp and brown
The traveler hastens toward the town,
And the tide rises, the tide falls.
Darkness settles on roofs and walls,
But the sea, the sea in darkness calls;
The little waves, with their soft, white hands
Efface the footprints in the sands,
And the tide rises, the tide falls.
The morning breaks; the steeds in their stalls
Stamp and neigh, as the hostler calls;
The day returns, but nevermore
Returns the traveler to the shore.
And the tide rises, the tide falls.



When autism entered out scene, I was reminded of the Longfellow couplets that had captured my interest so many years ago. Early on in our autism journey I learned that it was all about ebb and flow. I will say my first teacher could have been a bit softer. I'd joined an autism group on MySpace (back when people actually used MySpace) and became a participant in the group's message board discussions. Nick had made some gains . . . and then regressed, and I was floundered by it. I posted a question about the regression on the message board, and one of the "old timers" of the group who had a 20-year-old daughter with autism laughed at me. She laughed because autism is gains and regressions, over and over again, and it was foolish of me to be surprised by that. With autism, the tide rises, the tide falls, but in the morning the waves have wiped away the evidence of the gain that had traveled into the child's life the day before.

That's how it's been with Nick. Awesome gains--you've read about those gains here. Shocking losses--I'm astounded by them when I read back through my blog posts and realize, "Wow, Nick used to be able to do that?!"

The tide rises, the tide falls.

The past six months have been met with tsunami-sized waves. Nick had AMAZING gains. Language bursting, full sentences galore. The the tidal wave receded back into the ocean, leaving a gaping emptiness on the shore. His words disappeared. His behaviors increased.

"Behaviors." That's the nice-sounding autism speak for the simply awful things kids with autism can do when they're upset. It's so neutral--I mean, "behavior" is the appropriate word for any action, good or bad--but in Autismworld it definitely refers to the bad.

So, the behaviors have been increasing. And Nick is seven now, getting bigger and stronger, so managing the behaviors is more difficult. I can't just pick him up like I used to and carry him away.

I've been writing a section of a chapter this week that focuses on Intense World Syndrome, which posits that since individuals with autism have hyperactive amygdalae, the emotions and fears they experience are extremely intensified. On a cognitive level I completely understand why Nick's behaviors are increasing. He's scared, really scared, of the new things the summer brings. He's emotional, intensely emotional. I understand.

But when someone you love leaves you black and blue, it's really hard to focus the neuroscience behind the behavior.

It's been a tough few weeks. For the most part I've sequestered Nick and myself to home because leaving the house leads to more behaviors. It's been a bit like sitting in a prison. I realized that I spent four days in a row last week without stepping out my door even a single time, not even to walk to the mailbox. Every second of those days spent in the house were work. How do I keep Nick happy? I'll bring out this toy. I'll blow these bubbles. I'll say, "Mommy tickle Nicholas" when he starts to lose it so that he perhaps forgets he is angry and begins to laugh. Hours on end of metaphorically dangling marionettes to keep him calm.

Of course, life comes up and you do have to leave the house. When days where I knew I'd have to take Nick out of the house with me approached, I couldn't sleep the night before because I was so stressed about  how I would manage to keep him happy and avoid any meltdowns.

Nick had a lot of meltdowns last week, and by Wednesday they were getting more extreme. That afternoon I took Nick to his OT appointment, and as he worked in back with his therapist a couple of kids who were waiting for their appointments chatted with me, chatted with the owner of the clinic. Chatted. I was indignant at how unfair it was (irrational as that feeling was). Here were these kids with autism chatting with me. There's no way Nick could do that. He's not just different from other kids; he's different from other kids with autism. His autism is so severe that he's worlds away from being like other kids with autism.

I heard the scream from the therapy room. "That's loud!" one of the children complained.

"Yes," I said with a smile, "he can scream pretty loudly."

More screams and more screams and the therapist was bringing Nick back to the lobby. Or trying to. She was having a very difficult time maneuvering him as he screamed and flailed and grabbed. I helped her finally get him through the door and into the waiting room. Usually the children put their shoes on before leaving the therapy area, but there's no way she could have gotten him to do that on this day, so she and I sat on the floor with Nick, trying to get his shoes on as she gave me the rundown on the session.

As she told me about how they started with X, then did Y, then Nick got upset when she unexpectedly left the room to get an eraser, I struggled with Nick. I sat behind him, his back up against my stomach, and fought to get his socks on. He was screaming and fighting. I got one sock on, and he ripped it off. The therapist was still going through her debriefing and Nick escaped from me. He ran for the door to the therapy area and I bolted after him. He got the door open and was trying to get over to the therapy gym. I wrapped my arms around his torso and tried to pull him back. He's getting so heavy, so strong.  I got him out of the therapy area but couldn't get the door closed with my foot because Nick had grabbed the handle with both hands and was gripping it as if his life depended on it. I unwrapped one arm from around his torso and lifted up one knee to support the weight of his bottom--he's getting too heavy now for me to hold him when he's tantruming with just one arm--and used my free hand to ply his fingers from the knob. I somehow got the door closed and then Nick was on the floor, lying on his back, screaming a deafening scream. I used to be able to just reach down, put my hands under his arms, and lift him up, but his legs are too long now and he can kick me away with them before my short arms can get to his armpits. I tried to get behind him, thinking I could lift his back up just enough that I could get my hands underneath his arms and  pick him up. He flailed away and I had a handful of his shirt instead. I grabbed at him, being as careful as possible because I didn't want to hurt him. He dropped to the floor again, being the dead weight that my self-defense teacher told us we should be if someone ever tried to kidnap us. Man, was he right; I could not lift this seven-year-old.

That's when I realized that everyone was staring at us. Everyone. The parents. Their kids with autism. They were staring in horror at the freak show. Because Nick was horrifying even to autism parents. I felt my face flush in burning embarrassment as their eyes stabbed me.

I got Nick calm enough that I could get him back over to my bag and the waiting therapist. She picked up right where she'd left off, trying to get Nick to get his shoes on and trying to tell me about how the session went. Nick started to freak out again, and all I wanted to do was tell her to shut up and let us go because the screaming squirming child was about to explode again. I threw his shoes in my bag and picked up Nick. He pinched my biceps so hard that I wanted to scream, but I couldn't do much about it because if I wanted to remove the hands digging into my flesh I'd have to set him down again, which would just put me back where I started.

Somehow, I don't know how, we made it to the car, and I was drenched in sweaty exhaustion.

The next morning was a Thursday and Noah's camp (it was supposed to be Nick's too, but they cordially disinvited him after the first day) was going on a field trip he'd so been looking forward to. I couldn't keep him home. Unfortunate, because Thursdays are the dreadful day. They are the only day that Joe goes into the office so there's no kindly soul to watch Nick while I run out for ten minutes to take Noah to camp. I had to take Nick with me. There was no way around it.

I was smart and brought along the stroller. That would keep him calm and contained during the five minutes we'd need to spend in the lobby checking Noah in. I explained to him over and over again as we drove to the camp that he wasn't going to have to stay, that we were just dropping off Noah, that we'd go in for just a few minutes then be all done.

It didn't go so well. Nick flipped out. Screaming, flailing. It was a repeat of the day before. But this time . . .

He'd figured out that his legs were long enough that he could stand up while in the stroller.

It was hard to pick him up the previous day and get him to the car, but this day I was trying to pick up a tantruming kid stomping around with a stroller on his ass.

I got him out, with the help of the center director who was oh so glad that he wasn't in her program anymore. Because even though the camp was for children with disabilities, Nick's more autistic than the other autistic kids, just like the ones at OT, so they didn't know what to do with him.

I didn't know what to do with him. I knew that if we went home there would probably be another tantrum when it was time to get out of the car, and I knew that if we went somewhere else there would probably be another tantrum when he encountered a sight/sound/smell/taste that was unfamiliar. So we drove. For a hour. The motion of the car kept Nick soothed, allowing me to keep company with my anger for a rare bit. It wasn't fair. That doctor who'd evaluated him when he was three said he'd be okay, that he'd probably grow up to be a socially-awkward computer engineer, but that his prognosis was good. I'd been a great mom; I'd done everything, and more, to make that prognosis even better. I took him to every therapy under the sun. I had habilitators come to the house to work with him. I tried every diet, every supplement, every B-6 shot that specialists said would help him. I did everything, and here were the experts, clueless, asking me how to provide therapies for him because they didn't have a clue how to help him. I was angry with every one of them.

After an hour I decided say goodbye to my anger and take Nick home. He was so calmed by the drive; we'd made it past the behaviors.

Except when I pulled into the garage he had a meltdown because he didn't want to get out of the car. I won't describe it; just replay the OT and camp scenes and you've pretty much got it.

Noah had speech that afternoon. Nick wasn't going to make it through an hour of waiting in a lobby with me. I reached out to his dad, hoping, praying he would hang with Nick while I took Noah to his appointment. He was too busy. Joe was at the store, and I couldn't wait any longer for him to get back. I had to take Nick with us.

I pulled out all my best marionettes, and Nick was doing a fantastic job. Amazing. He was nothing like the child who'd been uncontrollable that morning. We sat in the back hallway of the clinic next to the cabinet where they store all the therapy toys and Nick pulled out a couple he wanted to play with. He was doing SO. WELL. I finally exhaled, something I hadn't done all day.

And then the son of the office manager opened up the clinic door and ran down the hallway, yelling to his mother, "Mom! Mom! I just saw so-and-so's car! They're going to our house we have to leave!" It was that naive sort of imploring that children claim because every little thing is the most important thing when you are young.

The emphatic child scared Nick and . . . meltdown.

He tried to run out of the clinic. I had to scoop the fighting child up so that he couldn't get out the door. He tried to run into the room where his brother's social group was meeting--I guess it seemed like a safe place because he'd had a great session there with his speech therapist on Monday. I closed the door that he'd partially opened and steered him toward the back hallway again. Since flight didn't work, his fight impulse kicked in.

Nick ran at the desperately strident child who had scared him and thrown his world into chaos. I fear to think what would have happened if I hadn't been there to unclench the one hand Nick had already started to dig into the noisy child's arm.

I picked him up and sprinted us into an empty therapy room, quickly closing the door behind us. I tried the one thing that always works, saying "Mommy tickle Nicholas," but he wasn't assuaged. Replay footage from OT and camp scenes. But it was OK; I'd take his painful pinches until he calmed because we were safe in a room where he couldn't hurt anyone else, where no one would stare at the horrifying show.

Ugh, but then I realized that he'd soiled himself. Oh no. I had to somehow get to my bag in the hallway and get Nick into the bathroom. But it would be OK, right?, because he always likes going into the clinic's bathroom since the sink is fun to play with.

It wasn't OK. He fought me like a caged animal. In sensory overload, the lights freaked him out and he turned them off. Feet kicked me and fingers pinched me in the pitch black. To have someone you love, so much, hurt you . . . there aren't words.

Eventually he let me turn the light back on and I got him cleaned up, but he didn't want me to redress him. He was fighting as if he feared the diaper in my hand.

It was the wrong brand.

I dug into my bag and found one that was the right brand and eventually he was dressed again. After ten long, scream-filled minutes in the bathroom, Nick was maybe, I hoped?, ready to go back into the hallway.

I showed him the toys he'd chosen earlier, trying to re-spark his interest, and when it seemed like he was on the verge of another meltdown I pulled some bubbles out of my magical mommy bag and blew them. Every time his face started to turn red like he was on the verge of exploding, I blew the bubbles to distract him from what was boiling inside him. Eventually he calmed.

My arm, post-speech clinic

That's when I started to cry. Sob. Whatever. Once it started I couldn't stop it; it just kept going and going. At first it was a silent cry, but then eventually there were the sounds. I was so embarrassed, humiliated, to think of the parents sitting in the waiting room at the front of the clinic hearing my sobs filter down the hall. Yet I couldn't stop it. I cried, and I texted Joe to see if he could come take Nick for me. The very, very sweet receptionist, a girl who reminds me of the person I used to be when I was young, came to my side. She asked if I was okay, and not knowing how to put into words the heartbreak of having a son who is so traumatized by the world that he hurts you incessantly, I choked out, "It's just a really bad day." She put her arm around me, which just made me cry more even though it was exactly what my embarrassment didn't want me to do. She gave me tissues and brought me water until Joe came to rescue me.

That night I couldn't sleep; my brain was still too active from the day's events. I got up to watch TV in hopes of distracting my mind into sleep. As I poured myself a glass of water, I felt a strong sense of . . . relief. We'd made it. It was an awful day, but we'd made it. We'd gotten through. We were going to be okay.

We are going to be okay. Tomorrow we'll go to see a new specialist and we'll see where this road takes us. For now we have the gently quiet beach, and if it is for but a moment before the next wave comes--which it will--we have it.