Tag Archives: behavior

Freestyle

About a year and a half ago, a fairly new friend of the family came over for a visit on a day that Neil had forgotten to take his medication. Behaviorally, he was difficult – highly agitated and unfocused.  At one point, when he was prevented from doing something that he wasn’t supposed to do, he went into full meltdown mode, growling and writhing on the floor, grabbing my legs and biting them.

Our friend tried to put a humorous spin on things. “Oh, he’s freestylin’!”

“Yeah,” I said, yanking a leg out of my son’s grip. At the time, it was painfully obvious that Neil very much needed his two types of medication to manage his behavior, both at home and at school. And it made a huge difference for him, enabling him to be mainstreamed with assistance and – unless a dose was forgotten – eliminating or subduing his meltdowns. I think both of us were relieved by it.

But, like most medications, his has its drawbacks. In addition to Neil’s excessively itchy scalp, it also caused noticeable joint stiffness for which he needed to see an orthopedist. And then there was something noticeable only to me – his eyes. I didn’t get to see much of them anyway, but I saw them enough to know them. Now when I looked in his eyes, there was a listlessness – a vacancy – caused by the medication. I wanted his behavior to change, not his countenance. Of course I welcomed the behavioral management, but his eyes were different. He didn’t look like himself, even when he smiled. I looked forward to the day when I could look into his eyes and see him again.

That day came last week.

This past November, we discontinued the antidepressant, and he did fine with that. Every week afterward, Neil kept asking me when he could stop taking the other medication, and as much as I also wanted him to stop taking it, I wanted to be sure that he was ready. If not, we could have him go back on it, but that would have been difficult after the six-week weaning process (cessation can cause withdrawal symptoms if not done gradually). In March, I felt that he was ready, and we began the process. There were a few times when I wondered if it was too soon, but we pulled through. In fact, Neil’s overall adjustment has been phenomenal. During that six-week period, we had two weeks of considerable upheaval while all of the flooring in our home was being replaced. Every room of the house, including Neil’s, had to be completely emptied and furniture had to be relocated, including pieces of our sectional couch being kept in the kitchen for three days. Neil was a bit on-edge during that time, and his medication was down to half-dose, but I am thrilled to report that he did not have a single meltdown. Not even close.

He became a little agitated at school during the weaning process, but he worked through it. This is huge progress for him! In the past, his agitation would lead to outbursts because he could not regulate his emotions or behavior. And now he can. The real test came last week when he was completely unmedicated and we attended his Court of Honor to receive a Scout rank advancement that he’d worked toward for two years. He had a new merit badge sash that he spent quite a bit of time applying his merit badges to, and he looked forward to wearing it. That night, we ate dinner and then got ready to go to the Court of Honor. After he dressed in his uniform, Neil built some Lego while I washed the dishes. When it was time to go, I grabbed my camera and my dessert contribution, and then we left. The meeting room, before the presentation started, was unstructured and loud with parents chatting and kids playing, and I looked to see how Neil was handling it. I could tell he was getting a little amped up, and then I noticed that he had forgotten to wear his new merit badge sash. I had to tell him before he discovered it during the presentation, which could have been disastrous.

I approached him quietly and broke the news. Angrily, he sucked in his breath and clenched his fists by his side. “It’s okay,” I told him. “Look – several of the other Scouts forgot their sashes too.” I could see him processing, regulating. Within ten seconds he had unclenched his jaw and fists and merely sighed in disappointment. “I was distracted by the Lego,” he muttered.

Sighing and muttering. This is freestyle now, and it’s a far cry from growling and writhing on the floor. In addition to that, he reported last week when he got home from school that for the first time ever he did not feel drowsy during second period, and he feels like he’s able to focus better. His scalp no longer itches. To top it all off, the next night at dinner he looked at me as he described a new movie idea, and he held eye contact for the longest I’ve ever experienced. It was incredible. And this time, the vacant look was completely gone. It was Neil again. I gazed into his beautiful eyes, absorbing his essence.

I’ve got my son back. And he’s better than ever.

 

Image credit:  Dalibor Ogrizovic

Counting My Chickens

So you know how when you blog about how well your child has been doing lately, very soon after that something happens just to keep you in check? Just to tell you don’t-be-counting-your-chickens and such? Yeah, that’s what happens. Apparently I forgot to knock on some wood (does my particle-board desk count?) when I wrote a few days ago about Neil possibly discontinuing his medication sooner than I’d thought. About him learning to regulate his behavior on his own. Yeah, about that.

First, a disclaimer: Neil has a really full plate right now (sort of like the one who gave birth to him). He’s enrolled in a full day of classes, in a transitional year (adjusting to a new school as well as a new level of school). And although he’s not experiencing the bullying of middle school (a huge relief), he is experiencing some stress in keeping up with assignments. Add to that the time spent in wrestling practice (Monday through Friday, right after school until 6:00 PM), and he doesn’t have much down time, which he sorely needs. He needs to have his time to watch movies, build Lego, and read. But he also loves wrestling and doesn’t want to give it up.

Any given day of the week is full. But Tuesdays are too much even for me. On Tuesday, he has school all day, then wrestling practice. I pick him up around six, we rush home, wolf down our dinner, he throws on his uniform, and we run out the door to his Boy Scout meeting. Boy Scouts is another thing that he loves and has been doing for several years. I sit off on the sidelines with some of the other parents while he participates in the meeting. Afterward, we go home, he showers, brushes his teeth, and has a little time to read before bed. It’s a long day for any kid, and especially for an autistic one.

But this week, this Tuesday, was like nothing I’d seen in a long time. Someone gave him a stick of gum when we arrived at the Scout meeting, and it was all downhill from there. His behavior was through the roof. No screaming (fortunately he seems to be well past that), but he was all over the place. Running around, acting like a little kid at a playground, disrupting others, bouncing off walls. It was like he had ADHD and was in a manic episode at the same time (for four years, I lived with someone who had ADHD and bipolar disorder, so I have some experience with this combo). I tried to discreetly redirect him, calm him down, but he exploded at me in response, making a scene. I kept watching the clock until the meeting was over. (In the past, I’d tried giving him his evening dose of medication before the meeting, but then he literally had his head on the table the entire meeting and was falling asleep.)

As soon as we got home, I went directly to his pill organizer to get out his evening dose for him. It was then that I discovered that he had not even taken his morning dose. And I was relieved. I was so relieved to have an explanation for his behavior, having spent the entire meeting wondering what the hell was going on with him. Any other day of the week, a missed morning dose would have gone unnoticed. I know this because I don’t get any calls from the high school as I did regularly when he was at the middle school. And it was the same with this particular Tuesday – no calls regarding any behavioral disturbances. Amazing. He missed his morning medication and went through a full day of classes, a two-and-a-half-hour wrestling practice, and a rushed dinner without a single issue. That, my friends, is rather impressive.

But that last push with the evening Scout meeting was just too much for him. So, now I have my answer. He does still need the medication. But he really is learning to regulate his behavior at school, which had previously been a big concern. All things considered, he’s doing pretty well with his full schedule. Even better than the one who gave birth to him.

The Regulator

“Did you refill your pill organizer for next week?” I ask Neil as he walks into the kitchen.

“Not yet.” He walks over to the cupboard where we keep his bottles of medication, takes a bottle out, and proceeds to shake it vigorously as he walks to the kitchen table. It sounds like he’s got a maraca in his hand. Then he puts the bottle down, opens it, and begins filling his weekly pill container.

Two weeks ago, we saw his psychiatrist and discussed weaning him off of one of his medications. He had been taking it for almost two years, and had been at the same dosage for over a year, in spite of the fact that he’d grown a lot in that time. The behavior he’d been taking it for had abated long ago. The doctor concurred, and told us to halve the remainder of what we had left, and Neil would be completely off of it in two weeks. His mood stabilizer, which he has been on for almost a year, he will continue to take for several more months at least. I figured that it would take him about two years to learn to regulate his behavior himself, which is why he started taking it.

Before leaving, we stopped by the front desk to schedule our next appointment two months out, as instructed by the doctor. The scheduler, a friendly but disheveled-looking woman with erratic movements (tics, possibly?), gave a little “Yay!” and started looking through her agenda. I recalled her reaction six months previously, when the doctor told us to schedule the next appointment in three months, how the scheduler actually whooted and did a little happy dance. I politely smiled in response, not sure what the celebration was about. Yay, we don’t have to come back for three whole months to a place that Neil despises? Yay, you don’t have to see us again for three whole months? Or Yay, we’ve reached a positive point with the meds and they don’t need to be tinkered with for a while? I’m guessing it was the latter. But still. My day of celebration will come when he no longer needs the medication at all.

And with the successful departure of one med, we are getting there. The fact is that, even at small doses, the mood stabilizer is something that needs to be watched. Neil was required to have blood drawn last week for several routine tests and had to see a specialist to make sure the drug is not affecting his joints, among other things. The fact that he developed a trigger finger on one hand and a sore joint in one foot, both in the past year, disturbs me. I don’t like this stuff. I don’t like pumping his growing body with chemicals.

I’m certainly not against medication; it is integral to the functioning of those who need it. I have seen how much it helps, and I know that some children truly need it for their conditions. Currently, Neil needed it to help with his behavior regulation, since his autism prevented him from regulating it on his own. But he’s learning how. And, as he says, he learns by doing. Each time he demonstrates appropriate management of his behavior, he learns from it. Yes, for now it’s facilitated by his medication. But as he learns (and as his dosage is not increased with his growth), his behavior regulation is going to become more and more his own doing, not that of the medication.

“How much longer do I have to keep taking this?” Neil asks after he swallows his morning dose. He knew that he needed it a year ago and requested it, but he believes that it makes his scalp itch and wants to stop taking it. “Because even on days when I forget to take it, I’m still calm at school.”

“Well, that could be because it’s still in your system. But I also think it’s because you’re learning to regulate your behavior yourself.”

“Yeah. I am. I don’t get angry like I used to.”

I tell him that we’ll talk to his doctor about it at our appointment in January and see what she thinks. And maybe I’ll have my day of celebration sooner than I’d originally thought.

To Med or Not to Med

The term “self-medicate” has a negative connotation.  It makes me think of alcoholics or drug addicts, both prescription and illegal. Yet, taken literally, the two words simply mean to administer medicine to oneself. Or to want to.

Nigel and I saw his doctor – his psychiatrist – today. He goes in every couple of months for his “med-management” appointment. He doesn’t like these appointments because he doesn’t like answering questions about himself (really, he only likes answering questions about Indiana Jones, or Lego, or the JFK assassination, or either of the World Wars). And even though I prepared him ahead of time, reminding him that the doctor is required to ask these questions and that he could write the answers down if he didn’t want to say them (“Why would I want to write anything, which would cause pain to my hand?!!”), he still got impatient with the questions and often sneered his answers. Or instead of actual answers, he would sneer – in reply to “How would you rate your mood today?” – “Same as it was last time!!”

This level of verbal hostility probably encouraged the doctor to nod in agreement when I indicated to her Nigel’s desire for some medication that would help him to not blow up at certain peers of his who think that it’s fun to antagonize him. He wants something to control his tendency to respond in anger because he wants to go back to being mainstreamed. And he knows that that is his most difficult hurdle. Not because anyone told him, but because he actually has the self-awareness to see it. Yet, he does not have the ability to control his reactions to people when they upset him. So, he wants medication. He knows that medication helped him to stop habitually pulling out his hair and eating it, so he figures that medication can help with his behavioral issues. He wants to self-medicate.

And I had done my research and knew what the doctor would suggest: antipsychotics. There’s another negative connotation. Is that really what he needs? Are the occasional times that he blows up worth putting him on a daily medication with significant side effects? I asked him, there in the doctor’s office, gently, “I know that some of the kids bothered you every day, but did you respond with anger every day?”

“Yes. Every day.”

I took a deep breath and tried to let what he’d said sink in. It was too difficult to imagine, again, what he went through at school, day after day, and to think that in spite of that, he still wants to go back. He wants to be like everybody else.  It means that much to him. But I still wasn’t ready to say yes to antipsychotics. So I suggested that he try behavioral therapy to learn different responses when his peers anger him.

“I don’t want to see more psychiatrists,” he said, right there in the doctor’s office. “They’ll do the same kind of treatment!”

His psychiatrist smirked as she wrote that down. I asked, “What kind of treatment are you expecting from the psychiatrists?”

“Asking me questions!” And, of course, the psychiatrist politely laughed.

But the issue was still hanging over my head. He wants to change his behavior but he can’t handle therapy sessions. So, the doctor went and got several pages’ worth of printed material for me on the two medications she suggested as possibilities (Risperdal and Abilify). She gave me her cell number if I wanted to discuss anything with her. And I left feeling just as unsure and melancholic as when I’d arrived.

Right now Nigel is sitting on the couch in the living room, watching The Never-Ending Story III, which he was excited to rent tonight. Most of the time, I hear the faint sounds of the TV, which he keeps at a low volume, but once in a while he makes stim-type sounds or repeats one of the lines of the movie. He is happy; he is doing his thing. And he is not on antipsychotics. I wish it could always be that way.

New Year, New Behavior

Often at the start of a new year, we note things that we would like to change about ourselves or our lives. We make resolutions and take steps to lose weight, be healthier, save money, or achieve a goal.  We are determined to improve.

Yesterday, I began preparing Nigel for his doctor appointment at the end of this week. He tends to detest these medication-management appointments, being asked to rate his mood, and answer other questions that he would rather not. So I thought that I’d prepare him a few days ahead of time, asking him some of the questions that I recall the doctor asking previously, so that Nigel can start thinking about his answers. “How would you rate your mood?” I asked.

“Fine,” he answered as usual. Then he added, “But I don’t see any changes.”

Surprised and intrigued at this part about “changes,” I pressed further. “What changes are you hoping to see?”

“My behavior. I want to not get angry so much so that I can go back to regular school.”

And my heart thumped as I understood what I had always wondered. Even though Nigel is much calmer with homeschooling than with mainstreaming, he is an extroverted autist, and he misses being in a more social environment. Even though he is regularly involved in Boy Scouts and attends a weekly social skills class, it’s not enough for him. He craves more. The sad part in all of this is that, because of his autism, he usually can’t handle more. It is very difficult for him to regulate his behavior and emotions. He is learning, but I’m hoping there is some medication that can help him with this. He has been on Zoloft to help with his OCD symptoms and anxiety, and that has been beneficial. I explained to him that the medication that he’s been on is not designed to help with behavior modification, but that there might be medication available that can help with that. One of his problems is that when kids do or say something to purposely agitate or upset him, he blows up, and he’s not able to regulate himself. Then he ends up getting in trouble, and it becomes a vicious cycle, because it’s fun for the bullies to upset him. Suggesting to him that he “ignore” them does not work for him. He is not able to ignore them (in my opinion, they should not be doing it in the first place, but that is another issue).

I don’t know if there is a type of medication that can help him with his behavior. We’ll be discussing it with his doctor, but if any readers have any suggestions, please let me know. I’d love to have Nigel be able to attend the local public school, at least part-time, because it would mean so much to him. His new year’s resolution is to go back, and I want to help him achieve that goal.

Thinking Ahead

My younger son Adam, who is twelve, has recently discovered Bob Marley. He found one of my CDs from my college days (when I first discovered Bob) and it was love at first listen. Adam plays it day and night. He tells me that he likes the music, but also the lyrics. And I’ve noticed that, too. Adam seems even calmer and more introspective than usual. What I hadn’t noticed was that Neil had also started listening.

Last weekend the boys were very excited because The Day the Earth Stood Still was opening. They had recently seen the original and looked forward to comparing the new one to it. I told them that we’d wait until the following weekend so it wouldn’t be so crowded. Then I made the fatal mistake of writing on the calendar the day and time I hoped that I could take them to see it.  If it’s on the calendar, it’s in stone as far as Neil is concerned. It’s going to happen. And usually, it does. But that morning the schools had scheduled an emergency 2-hour late start due to bad road conditions, and that threw everything off for the day. Because Adam started school two hours later, I couldn’t go into work until two hours later. Consequently, I didn’t finish my work until two hours later than I normally do. By the time I got home, I could not do all I needed to do in time to go to the movies that evening, and we would go the following day, I announced.

Neil got upset. “But it’s on the calendar!” he yelled and began breathing heavily through clenched teeth, eyes wild as he quickly went into meltdown mode. This was not good. I had plans with a friend later that evening (something I had planned to do after the movie), and if Neil didn’t calm down, I wouldn’t be able to leave him. I tried reminding him about “Old Plan, New Plan.”  “That doesn’t work!” he yelled. He then took a wooden ruler and mutilated a piece of pizza with it. I could tell he was escalating. He went to the living room and broke one of my hand-painted pysanky eggs from relatives in Slovakia. I knew that my response was crucial – he wanted a reaction out of me, so I did not react. I calmly said, “Neil, pick up those broken pieces and put them in the trash.” And I think he was a little surprised that I didn’t yell at him about the egg, so he actually cleaned it up. He resumed his verbal tirade, but at least he stopped being destructive. Then I had an idea. An alternative for him. It was a “New Plan,” but I didn’t want to call it that.

It was risky, because I didn’t want him to think that I was rewarding him for his behavior. But what I hoped to accomplish was to help motivate him to regulate his behavior himself. Some would call it a bribe. But God knows that when you have to change plans on an autistic teen, you better have an acceptable back-up plan.

I sat him down and tried to look into his wild eyes. “Neil, here are your choices. You can be mad about not going to see the movie tonight, but that’s not going to make it happen. Or, you can calm down and come with me to the store to pick out a video rental and get some ice cream, and we’ll see The Day the Earth Stood Still tomorrow.” Then I got up and went to my room to get my boots and coat.

Adam followed me into my room. He looked at me. “Why does he act that way?” he asked with concern and sadness in his voice. “Honey, it’s because the autism makes it hard for him to regulate his emotions and his behavior.”

“Then how is he going to take care of himself when he’s an adult?” Adam asked in a sincere voice.

A chill ran through my body. I looked at him. “We don’t know if he will. But he’s learning; he’s trying. I think he’ll figure it out. And he can live with me as long as he needs to. So can you.”

I put my arm around him and we walked out into the hallway. Neil was standing by the front door, with his shoes and coat on. I looked at his face, and the wildness was gone, replaced by a look that I couldn’t determine. Remorse? Gratitude? Maybe both. “I’m ready,” he said. “Okay, I’ll get my purse and keys,” I said. As I walked off, I heard Adam quietly say to him, “I’m glad you were able to calm down.” And my heart filled with far too many emotions to identify.

A moment later, as I started the car, Neil asked from the back seat, “Can we listen to ‘Don’t Worry About a Thing’?”

“It’s called ‘Three Little Birds,'” Adam said.

“Sure,” I said, inserting the CD. And then we all sang, even Neil:

Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right . . .