Category Archives: Therapy & Medication

Freestyle

About a year and a half ago, a fairly new friend of the family came over for a visit on a day that Nigel 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 Nigel 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 Risperidone, like most medications, has its drawbacks. In addition to Nigel’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 Risperidone. 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 Zoloft, and he did fine with that. Every week afterward, Nigel kept asking me when he could stop taking Risperidone, 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 of Risperidone 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, Nigel’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 Nigel’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. Nigel 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, Nigel 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 Nigel 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 Nigel again. I gazed into his beautiful eyes, absorbing his essence.

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

 

Re-Evaluating

I used to love Magic Slates when I was a kid – those black wax drawing boards with gray plastic sheets on top. Not so much because if I messed up, I could start over, but because I could adjust my drawing as I went along. If I started at the top and worked my way down, I could lift up the film a little bit to make changes. Nothing was set in stone.

And so it is with behavioral medication. If a certain type isn’t working, you can try another one. If the dose doesn’t seem right, you can increase or decrease it. And when you think you’ve reached a point where it’s no longer necessary, you can stop taking it. Or, you can ask your mom for six months until she agrees.

Nigel had an appointment with his psychiatrist on Friday afternoon. As we often do in that office, we waited for quite some time before she opened the door to the waiting area. And then she called in someone else whose appointment, we learned, had been scheduled forty-five minutes before ours. I looked at the doctor, and she suggested that we reschedule, which I got up to do. I was shocked to find that she had an opening just a few days later, and we took it.

We got back in the car to leave, and Nigel began his negotiating process. He’s been doing this with me since at least October – telling me that he wants to stop taking the medication, that he doesn’t think he needs it anymore. And I respond the same way, telling him that he feels this way because the medication is working. But this time was different. This time I thought about the fact that he has been on Risperidone for fourteen months, and in the last twelve months, we have not increased his very low dosage. During that time, his height has increased by five inches (!), and his weight accordingly. At this point, the medication is probably having minimal effect. And even though it helped him when he really needed it, I’ve never felt comfortable with him having it in his body, and I’ve looked forward to the time when he could discontinue taking it.

And I think that the time has come. He has enough medication left to gradually wean himself off of it for the next three weeks. Half of that time is Spring Break, so it will be a low-stress time for a transition. And we’ll be checking in with his doctor tomorrow to confirm our plans.  

What’s comforting is knowing that, as with my childhood toy, we can always start over. If it turns out that we were a bit premature and that Nigel still needs the Risperidone to help regulate his behavior, we can always have him start taking it again. But we wouldn’t know unless we tried, so we’re going for it. He thinks he’s ready, and now, so do I.  

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 Nigel possibly discontinuing Risperidone sooner than I’d thought. About him learning to regulate his behavior on his own. Yeah, about that.

First, a disclaimer: Nigel 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 Risperidone 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 Risperidone, especially on Tuesdays. 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 Nigel 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 – Zoloft. 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 OCD behavior he’d exhibited that made me realize he needed the medication (systematically pulling his hair out and eating it) is no longer present at all, and hasn’t been for a while.  The doctor concurred, and told us to halve the remainder of what Zoloft we had, and Nigel would be completely off of it in two weeks. The Risperidone, 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 Nigel 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 Zoloft, we are getting there. The fact is that, even at small doses, the Risperidone is something that needs to be watched. Nigel 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. Nigel needed it to stop pulling out his hair and eating it. Then he 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?” Nigel 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.

The Reason

Now we get to the heart of the matter – the reason the Knowledge for People team came to Nepal. We have taken some time to get over our jetlag, do some sightseeing, and acclimate a little. Now it’s time to work. And I have come to realize that, apart from raising my children, it is the most fulfilling work of my life.

AutismCare Nepal is a small, new, parent-founded center in Kathmandu. It is also entirely parent-funded. Most of the parents had to go to Delhi, India, to receive a diagnosis for their children and therapy/treatment suggestions. Imagine having to go to a different country for a diagnosis. They had absolutely no resources for autism families in Nepal. AutismCare Nepal is the first step to rectifying that.

Zahida, Tanya, Ann-Marie, Nikki, Dori

And that sort of makes the Knowledge for People team the second step. Our team is comprised of Nikki (the director), Dori (speech therapist), Ann-Marie (ABA teacher), Zahida (behaviorist), Blaine (photo/videographer), and me (parent representative). We have prepared presentations on general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Our idea was to have two days at the beginning of the week to give the presentations, as a way to introduce the background knowledge about the therapies and strategies. Then we would spend the rest of the week working directly with the children (twelve of them, we were told) and their parents on an individual basis. Upon our arrival, we discover that things have been rearranged. The presentations are now scheduled for the end of the week, and individual sessions will be done first. Not only that, but due to a news article about our arrival that had been published the week prior, the number of children jumped from twelve to thirty. We never thought there would be so many. But then again, this is autism. The rapid increase in Kathmandu mirrors the increase in developed countries. I immediately saw the parallel.

So, we figured out a way to fit in 28 individual sessions with the families. We wish we could work with them all individually, but this was the best we could do. The two families we couldn’t fit in (and there were even more as the week went on!) agreed to attend the presentations at the end of the week and ask questions about their individual needs then. We set up stations in different rooms of the center, which is a two-story house that the parents rent (in addition to their regular living expenses). One room is for PECS and social story instruction, another room is for ABA/DIR Floortime instruction, and the third is for sensory integration. The parents and children rotate through each of the rooms, spending close to an hour in each one. Some of them have walked a great distance to be here. Some of them have taken various buses for over an hour. Some speak a little English, some none at all. By the time all of those scheduled for that day have gone through all of the rooms, the poor kids are past their limits. It is exhausting for everyone.  As an introvert, it is difficult for me to give a condensed version of my half-hour-long sensory integration presentation to each new parent. I have to do this otherwise they will not understand the reasoning for the sensory therapy techniques that Zahida (who is studying to be an OT) and I are suggesting for their children. I have to describe, among many other things, the vestibular and proprioceptive senses 28 separate times (29 if you count the presentation at the end of the week). I wish we could have done the presentations at the beginning of the week, so that everyone would have this information prior to the individual sessions, but I have to be flexible and focus on doing it differently than I expected. And here I see another parallel – learning to be flexible when plans change is something that my own son struggles with on a regular basis. Now I have some idea of just how exhausting it is for him.

Aside from adjusting to the change in plans and the increase in children, overall our individual sessions go very well. The children range in age from three to eleven, at different areas of the spectrum. Several of them are nonverbal, and some have limited verbal ability. Some are fearful, some are not. Some are quiet and complacent, others are loud and aggressive. Some throw sensory seeds all over the room, a few lie down and nap. Some put everything in their mouths, some categorize and line things up. But all of them, well, they are simply beautiful. I see so much of my son in many of them that it throws me back to the early days of his autism diagnosis, when we didn’t have the internet for information and support, and all the books I could find were archaic or otherwise not helpful. This is where those parents are. And they are wonderful – so dedicated to their children and eager to learn. My experience of having my son’s diagnosis twelve years ago helps me to have some idea of what they’re going through now. I look into these parents’ tired but yearning eyes and want to throw my arms around them.

And of course they have questions. Tons of questions. Questions about spitting, toilet training, masturbation, safety, eye contact, head-banging, you name it. They are sponges, for lack of a better metaphor, absorbing every suggestion, every piece of information I can give. But no one has all the answers, especially not me. And near the end of one of my individual sessions, when a five-year-old girl begins having a seizure, I freeze. Her mother is sitting cross-legged on the floor with her daughter lying in her lap. She does not speak English and the translator was needed elsewhere, so I have no way to communicate. But the mother, of course, knows what to do. She calmly holds her daughter as she seizes; I watch her little body twitch violently, and she moans with each spasm. I wonder if she is in pain, or afraid, but maybe her sounds are involuntary. I don’t know. I feel useless. I have no experience with seizures, and this one seems to be lasting a minute, but feels longer. Trying not to panic, I ask if she needs anything. The mother glances at me. I know she does not understand my words, but I think she senses the concern in my voice, and there is some sort of appreciation in her eyes.  Then she turns her attention back to her daughter, who soon stops convulsing. A moment later, the mother picks up her things and, with her daughter in her arms, says Namaste and leaves.

I take a break. I blot my face, drink some water, and go in the next room to observe the end of a PECS session. I know if I go somewhere alone, my emotions will overcome me, and now is not a good time for that. It is mentally and emotionally taxing, this work we are doing, but as I mentioned above, it is the most fulfilling of my life. I know that my suggestions cannot help everyone, like the parents whose children have seizures, but I also know that my presence here is making a difference. They know that people out there care. That we would come from half way across the world to try to help, to tell them they are not alone. Yes, that is the reason.

For photos of us “in action” working with the kids and parents, click here.

A Soothing Routine

We’re all well aware of the importance – nay, the necessity – of routines for people on the spectrum. Some of them can be quite involved, restrictive, and difficult to follow on a daily basis, while some aren’t quite so limiting. All of them serve a purpose for the autistic person: to establish order, a little predictability in an unpredictable world. They don’t know what kids at school will say to them from one minute to the next, or if an insect will fly near them at any given time, or if a sudden loud sound will torment them in the grocery store, or if they have to go somewhere unfamiliar. But they do know that when they get home, they can somersault down the hallway, they can eat their snacks in the exact order that they choose, and they can watch a movie they’ve seen dozens of times and repeat all the lines while they watch it. And the stress of the day will be lifted.

So, as we can see, routines are also calming. That’s why one of the most important routines of all is the bedtime routine. For many, it involves bathing, a snack, reading a book, setting out clothes and preparing a sack lunch for the next day, brushing teeth, etc. Nigel does most of those things, but his favorite part of the evening ritual is listening to Music to Relax.

Every night we play it while he is getting ready for bed in his room. We turn on a softer light, we turn off the computer and TV, and the soothing classical music of this wonderful CD helps Nigel to slow his mind down and prepare for a restful night’s sleep. I tell you, it’s amazing. Nigel has listened to other CDs designed to be listened to while going to sleep, and they were quite helpful for a time. But the important difference is listening to Music to Relax for a half an hour before he even climbs into bed. Then he listens to the rest of the CD after I come and say goodnight to him and indulge him in his quick sunglasses ritual. And then he falls asleep quicker than he ever has before.

This is the second Advanced Brain Technologies CD that I’ve tried and reviewed, and I am once again thoroughly impressed with the results. To recommend them is an understatement – I implore you to try these CDs! They are truly beneficial.

Suspended Reality

I sit in my quiet house watching snow falling on branches of trees that had already started blooming again. But the really unusual part of that sentence is that one word – “quiet.” That’s right – my sons are not home this week.

They visit their father in LA for several weeks every summer, as well as Spring Break and Christmas. I’ve mentioned The 700-Mile Kid Swap before, as well as what happened the last time we did it. But this time was by far the most beautiful (scenery-wise). We took a little detour into north-central California to meet up with their dad at a different spot, since he wanted to take the boys to visit his mother for a few days. And the drive there was simply incredible. At one point we drove through seven miles of orchards. Yes – seven miles of orchards one right after another! And through the trees we could see views of beautiful Mt. Lassen, which Nigel and I climbed last summer. Nigel liked seeing Mt. Lassen, but Aidan was enamored with the orchards. “I would love to live here,” he said in a dreamy voice.

So now they are away this week, and my home is quiet. And I have tons of things to do to fill that time, but I feel like I’m missing an arm and a leg with the boys gone, and it’s hard to get anything done that way. I don’t feel like myself when they’re not here. I’m living in a suspended reality.

I sometimes wonder if that’s what life is like for Nigel – he has his way of viewing the world, and a lot of it is very different from how others view it. And I especially wonder how it is for him being on Risperidone. He is calmer, yes, and can regulate his behavior a bit better, but he is not himself. It is a subdued version of him, a suspended reality.  His eyes – and his demeanor – are different. I know – this was what we wanted. He wanted it, too. We wanted the change in behavior. But I didn’t know there would be a change in him, in his countenance.  

Again I remind myself that he doesn’t need to be on it forever – just a couple of years, I hope, until he learns to regulate his behavior himself. And eventually he will, of that I am sure. He says he can feel the difference in himself, and he is satisfied with the results, which is most important. But I’m looking forward to the day when he no longer needs to take it, and I can have the real Nigel back. For now, though, I know that I’ll still enjoy the company of the modified Nigel. He may not appear to be himself right now, but he’s still unequivocally Nigel.  And I’ll smile as I think of him at the sunny beach this week, while I watch the snow fall.

New Year, New Behavior, Part 4

There are times when we wonder why we waited so long to do something. Why we fretted, why we were hesitant. This is one of those times.

My family’s sensitive genetic makeup is such that we respond almost immediately to anything in our systems, whether it’s ibuprofen, caffeine, cold medicine, or stronger stuff. With prescriptions, doctors warn us that it may take two to three weeks to see any differences. With us, it’s often by the end of the second day. For instance, eleven years ago when I was on Zoloft for OCD and anxiety, I felt noticeably better on the second day after starting it. I felt so much better that I wished I had started sooner, that I hadn’t kept putting it off.

Last weekend, Nigel began his experience with Risperidone. His doctor started him on a very low dosage, and the literature included with the prescription mentioned that we probably wouldn’t see any behavioral changes for about two weeks. At the end of the second day, I could already see a difference. He was not argumentative. He was more complacent, relaxed. He was agreeable. His behavioral therapist also noticed it at his social skills class the next day. This is the kind of improvement we need for him to be able to go back to regular school. Of course, now that his body has adjusted to the very low dosage, he is no longer as agreeable as he was for the first few days, which I expected. We see the doctor in two weeks whereupon the dosage will be increased. But the process has begun. And it’s working.

And so, since I can already see how much this medication will help Nigel with his socialization goals, I can’t help but wonder why I was so reluctant to get him started. Why didn’t we do this before? Why did we constantly bang our heads into the wall (literally) in frustration, when we had options? Why was I so fearful of going this route? I don’t really know, but it’s not worth it to me to obsess about it any longer. Life is about learning. We learn and then we continue on. We make adjustments and we move forward.

Part of moving forward for me is recognizing when I need to take a break and then actually doing it. We tell our kids to let us know when they need a break, but we tend to ignore our own needs. When you have a lot of plates up in the air, it’s hard to justify walking away from them to take a break. But I know I need one, and I know my boys do too. So we’re packing up and heading out. This little clan is going to the coast for the weekend. We’ve rented a small cabin right on the beach, and my sister and brother-in-law are joining us. It’s a place we’ve been to before, one we all love, but we haven’t been there for three years. And that’s just too long. Nigel came to me last night at midnight, red-eyed, asking, “Mom, are you sure you remember how to get there?” He is so excited; he’s beside himself. This morning he actually said, “I am overzealous about going to White Rock.” He and Aidan have been counting down the days. So that’s how I know – we all need this. And I shouldn’t have waited so long to do it. So whether it’s trying new medication or taking a break when we need to, I’ve learned not to put it off. I’ve learned not to be afraid. I’m letting the plates fall where they may, and we’re taking off for a few days. Ciao!

Music for Thinking

We all know that music soothes the so-called savage beast, but it can do much more than that.  I have written before about how beneficial music has been for Nigel, including helping him to sleep better. So in December, for Autism Twitter Day (organized by Bonnie of Autism Family Adventures), I was excited to win a new therapeutic music CD. And the results of listening to it have been pretty wonderful.

Advanced Brain Technologies has created The Listening Program as a type of Auditory Integration Training/therapy. The program, first available in 1999, consists of audio CDs containing psychoacoustically modified classical music designed to stimulate the different functions of the auditory processing system. This is accomplished by carefully selecting compositions which include varied orchestration, tempo, octave, meter, etc. Post-production techniques involve filtration, audio bursting, blending, spatial dynamics, audio morphing, and more. Case studies demonstrating the positive outcomes with ASD kids using this program are available here.

Or, you can just read this case study: In the past two weeks since Nigel began listening to Music for Thinking before going to bed, not only has he slept better, I have seen noticeable improvement in two other areas. According to Advanced Brain, researchers have made a link between the middle ear and social engagement that provides insight into why some ASD individuals may demonstrate behaviors and communication difficulties in certain situations and environments. I hadn’t yet made that connection when I wrote about Nigel recently wanting to go back to regular school to be with his peers and the fact that he did so well at a Boy Scout function last week. But it makes sense now, after reading the detailed literature included with the CD.

The other area in which I notice improvement is in his schoolwork. He is frustrated because he wants to go back to regular school, and his attitude reflects that. However, the quality of his work has improved, as well as his ability to organize his thoughts. Just last week he wrote a three-paragraph essay about one of his Scout camping trips. It was well-organized, full of wonderful details, and included a conclusion listing all the things he learned on the trip. We had worked so long and painstakingly on his writing skills, starting less than a year ago with his first fledgling paragraph. To see him go from a labored few sentences to a beautiful, well-planned and well-written three-paragraph essay, well, I’m filled with such pride and emotion that I can’t even describe it.  I don’t think it’s a coincidence that he was able to do this after listening to Music for Thinking for two weeks. I’m a firm believer, and we’ll definitely be trying more CDs!

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.