Author Archives: Tanya Savko

About Tanya Savko

My name is Tanya Savko. I am a writer, teacher, and mother of two sons. The "writer" and "mother" elements have been part of my life for quite some time, but the "teacher" title is new this year. My older son, Nigel, was diagnosed with autism at age three, in 1997. Between the ages of three and six he received intensive ABA-based therapy, which I believe was essential to how well he is able to function today. Unfortunately, negative peer interaction in middle school has made it necessary for me to take the leap to homeschooling him. We began this journey in February, 2008. The Teen Autism blog is a way to explore and understand whatever happens next. My younger son, Aidan, is eleven. He is an avid gamer and wants to design video games when he grows up. He is imaginative, sensitive, and compassionate. His Kindergarten teacher remarked how Aidan would always be the first to comfort his classmates if they were hurt or upset. He has mentioned to me several times that he feels like he is the older brother, always looking out for Nigel. I am truly blessed with both of them. I decided at the age of four that I wanted to write books. I have written ever since (although I didn't limit myself to books). My poetry and articles about autism have been featured in several publications, and my novel about raising a child with autism is scheduled to be published later this year. I decided to start the Teen Autism blog as a way to connect with other parents of autistic teens, to gain insight from those who have been through the teen years, as well as to offer encouragement to those just entering them. I welcome your comments, suggestions, and questions. It's good to know we're not alone on this journey.

Bob for the Holidays

One love, one heart – let’s get together and feel all right. – Bob Marley

As many of you know, this family loves Bob. All three of us. In fact, it’s the only music that we all enjoy equally. It’s our go-to music for calming meltdowns, running errands, alleviating anxiety, and taking road trips. But now there’s something else that it’s good for, something only Neil, with his keen observation, could have noticed.

The three of us were out running errands yesterday, singing along to Bob in the car. Between songs, Neil commented, “This music is the perfect Christmas music – because it talks about peace and love.”

I couldn’t agree more. Beats the hell out of “Jingle Bells.”

From our house to yours, wishing all of you a beautiful holiday filled with the blessings of peace and abundant love.

Significant

“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

– Merriam-Webster’s Dictionary

My son, age 15, is in a major transitional year, having begun high school three months ago. He has a new case manager and new teachers who are all still getting to know him, his strengths, and his needs. He has a full load of classes and a couple of self-chosen extra-curricular activities, including being on the school’s wrestling team, which he dreamed of doing for many years. I am, of course, very proud that he achieved that, and of everything he’s accomplished. He has come so far from his non-verbal, sensory-agony days.

And fortunately, I like his new case manager. She quickly assessed my son’s needs and has worked hard to meet them. I am very appreciative of her work and her attention to my son. She recently emailed me to go over a few issues, including how to help him participate more during wrestling practice. Among other things, she wrote, “[The coach] does not have a lot of experience with students with significant disabilities.”

And it hit me hard. That phrase – “significant disabilities” – is heavy. It was, of course, not meant in a negative way. But it smacks a parent in the face. It’s a harsh reality check, even twelve years post-diagnosis. That phrase takes my recent hopes for a possible semi-independent adulthood for my son and dashes them to pieces. It takes me back to square one, when he was three years old and we received a diagnosis of classic autism, and again at age five, with a different doctor and two years of intensive therapy under our belts – same diagnosis. My head reeled again as it did so long ago. Significant disabilities, even at age 15, even after all the work he’s done, all the years of continuous therapy, all the parental heartache. “Significant” must be somewhere in between “moderate” and “severe.” And “significant disabilities” do not induce much hope.

Days pass. I have been walking around in a melancholy haze caused by two seemingly innocuous words. They are truthful, after all. I realize that his case manager sees a 15-year-old who needs constant one-on-one assistance in all of his classes, two periods a day in the resource room for help with in-class work and assignments, daily pull-outs from his mainstream classes, ongoing social skills and speech therapy, daily medication for his behavior, curriculum modification, and various other accommodations that I am constantly grateful are available to him. I can’t deny that all of that does, indeed, point to “significant disabilities,” just as how his needs when he was first diagnosed pointed to the same.

I know that my son’s case manager meant no harm in what she wrote; she merely stated a fact, and I certainly don’t hold it against her. But she doesn’t know his history. What she doesn’t see is a 15-year-old who, despite great difficulty in learning to talk and filter severe sensory issues, despite enduring years of bullying, among countless other challenges, has always gone to great lengths to learn to work with his autism and to function as well as he does. He always tries. He wants to live his best life as much as I want him to. I find that significant too.

Down Time

I am relieved to report that I am almost back to normal, after being sick for a full week. I haven’t been that sick in over eight years! In recent years, I’d been guilty of taking my health for granted – you know how when you’re well, you sort of forget what it’s like to be sick? Well, I do, since I’m not sick that often. Let me tell you, I will definitely be more conscious of my good health from now on.

But something else happened while I was sick, something I hadn’t expected. Included in all of the wonderful get-well wishes I received from my friends and family (thank you, everyone!) was a little advice in Carrie’s comment:  “. . . in the meantime, try to enjoy the down time!” It’s not something I’ve ever thought of doing while sick; it just either didn’t occur to me or wasn’t an option in the past, when the boys were younger. And granted, I still had to drag myself out of bed this week to get them off to school, pick them up, and make their dinner.  But aside from that, I actually took it easy. It’s sad how I have to get really sick before I force myself to slow down – because by then it’s not a choice. And so, I found myself with a little down time. I felt pretty lousy during it, but at one point I just sat on the couch, wrapped in my soft, warm robe with a down blanket over that. I drank a cup of tea. And I did nothing else. I just sat there. What an experience!

I just sat there and tried not to think about much of anything, like some of my sporadic attempts at meditating (which I haven’t done for a very long time). Thoughts would come, I would acknowledge them, and let them go. Thoughts of Neil’s future, of my own, and how intertwined they will be. But the great part was that I didn’t attach any emotions to the thoughts, which was very different for me. Usually all of my thoughts have emotions attached to them. I can easily get emotional about things that have never even happened, just by thinking about the possibility of them. But somehow the illness gave me a sense of distance – a bit of a novelty, I must say.

So I rested. I read. I drank a lot of herbal tea. I forced myself to stay away from the computer. For the first time ever, I read the current National Geographic issue before the new one arrived (barely – the new one arrived today and it looks amazing). I noticed that National Geographic does not use a hyphen in “email,” so now I feel justified in not doing so. Who knows if I would have noticed that had I not been sick? All these hidden benefits – down time, thoughts without emotion, proofreading insight. I’ve been missing out.

But now it’s back to the grind – and Christmas a week away, no less. Fortunately, because I had pushed myself prior to getting sick, I have nearly all of my shopping done. And although I’m not completely 100%, I feel calmer than I did a week ago. I feel sane. I feel like I’m ready for the busyness of having holiday guests, cooking and baking, and getting the boys ready to go to L.A. to visit their dad. A lot to do, but I am rested and ready. I didn’t see it coming (getting sick) and thought I would totally fall behind, but it turned out all right after all, as things often do when you don’t fight what is. Sometimes, you get the rest you need, and you might even learn something while you’re at it.

A Normal Man

Image credit: simon gray 

*

Sometimes, as a mom blogger, I get the feeling that my kids somehow tap into the wavelength of a post I’ve written – before I even post it. And then they come to me and totally disprove whatever I’ve written about them.

For instance, the night that I wrote “Polite Conversation,” about Neil using lengthy delayed echolalia at the dinner table one evening, he came into my office – minutes before I posted it – and began what was undoubtedly the most incredible conversation I’ve ever had with him.  I honestly didn’t realize that he was capable of a serious back-and-forth discussion regarding intangible ideas for over half an hour. And he revealed so much more about himself during the course of it.

He started off by running into my office, eyes wide. “Mom! Have you heard of something called ‘home births’? Because I think I want to have my children that way and I wanted to see what you thought of it.”

Definitely didn’t see that coming. “Yes, I’ve heard of them. But I think that you should talk to your wife about it first. And I don’t think you need to worry about that for a long time.”

“You mean when I’m 18?”

(!) “No, I think that’s a bit early. You need to have a good job and a home for your family before you start thinking about having children.”

“20?”

“I think that’s a bit early also.”

“Well, I need to be prepared.” That’s six years of Scouting talking.

Then he sat down on a chair that’s across from my desk, and the topic changed to dating. He mentioned, quite wisely, that he needed to have a girlfriend before he could have a wife, and that there didn’t seem to be any girls at the high school who really understood him. He said that some of them were nice to him, but he was worried that they might not be sincere. “What if they ask me out on a date, but they’re just trying to trick me? How will I know the difference?”

My heart ached to hear him say it. He already knows that he is vulnerable to this. I told him that one thing that will help is to be friends with a girl before dating. And then, I pulled out my new copy of The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron. It had just arrived from Amazon mere days before, and I had been waiting for the perfect opportunity to tell Neil about it. I couldn’t have planned this better if I tried.

He seemed interested. I asked him if he wanted to read it himself or if he wanted us to read it together, and he opted to read it on his own. I was thrilled by his positive response! Somehow I had tapped into what he needed – before he even asked. But of course, we autism parents do that all the time, especially when our kids can’t ask.

We talked some more. We conversed. He made eye contact, he posed ideas and waited for my response, and then he responded to my ideas. Sometimes he added even more to his response. His voice inflection was perfectly appropriate, he tried new words and asked me if he used them correctly, he was fully engaged. My heart was bursting with joy, because for many years I didn’t know if such conversations could ever take place.

Then at one point he leaned forward in his chair and said, “I think I’m different from other autistics because I want to be a normal man and have a wife and family.”

I tried not to let my face show too much emotion, but lately my son has been causing me to tear up a lot. “Oh, honey. Yes, your autism makes you different and makes some things more difficult to achieve, but don’t ever think that you can’t be a normal man if you don’t have a wife and family. Whatever you do with your life, you will always be a normal man. In fact, better than normal.” I got up, walked over to him, and gave him a hug, which he stiffly accepted (the usual for him).

He left then, book in hand, and I couldn’t help but cry. I always think about my son’s future and how different things will be for him. But what I hadn’t thought about is the now unmistakable fact that he is also thinking about his future, his adulthood. And then I remembered something that I had forgotten to tell him. Something I wanted to make sure he knew. I dried my eyes and walked to his room.

“Neil, I just wanted to tell you that when you’re an adult, I’ll still be here to help you, to talk with you. I’ll always be there for you.”

He paused a moment, taking that in. Then he said, “Good, because I don’t know how to get grants for college.”

Oh, honey. I got you covered.

Another Moment of Grace

The Scene:  Interior of a small SUV. It is night. A mother is driving her teen son back to the video store where he had just rented a video game. They were half-way home when he discovered that the disc inside the case was not the correct game format. The mother thanked him for checking before they got all the way home. She found a place to turn the car around and started heading back. They are driving along, doing about 40, when suddenly the mother realizes that a pair of headlights is coming straight at them. They will collide in seconds. The mother slams on the brakes, praying that the other driver does the same. She hopes that the big truck behind them sees what is happening before it slams into them. The headlights slow; the driver has seen them. He or she stops, backs up, and turns into the nearest driveway. It seems to take an eternity. The truck behind the mother and son slows down and does not hit them. The mother, shaking, begins to drive again. A few moments pass.

Teen son (calmly observant): We are the luckiest family in the world.

Mother (choking back tears): Yes we are, honey. Yes, we are.

Image credit: kmccool 

Polite Conversation

‘What ho!’ I said.

‘What ho!’ said Motty.

‘What ho! What ho!’

‘What ho! What ho! What ho!’

After that it seemed rather difficult to go on with the conversation.

-P.G. Wodehouse, My Man Jeeves (1919) ‘Jeeves and the Unbidden Guest’

Yesterday, Adam’s best friend of seven years was visiting at our house. In the spring, he moved three and a half hours away, so the boys don’t get to see each other very often. They talk a lot on the phone, but Adam always looks forward to getting to spend some time with his friend when he’s in town. And yesterday, spur of the moment, he called right as Adam was getting home from school. “I’m in town visiting my dad,” K said to me on the phone. “Is it okay if I come over for a bit?”

So Adam and K had a blast hanging out and playing video games together. I threw in a pizza for dinner and called all three boys out to the table when it was ready. Neil came out last, fresh off a movie in his room. He knew that K was visiting and greeted him as he sat down. I sat about fifteen feet away in the living room, reading.

They had barely taken two bites, presumably, when Neil launched into some lengthy delayed echolalia. (Technically, these days it’s called ‘scripting,’ but ten years ago, when it was his primary means of communication, we didn’t have that terminology yet. Or at least I didn’t. His therapists called it ‘delayed echolalia,’ a term which has stuck with me.) I had no idea what was going on with him. He kept going on, rapidly reciting something in a strange tone of voice. Adam and I, glancing at each other, were stunned by this monologue. Neil often still says single lines from movies, or a couple lines of dialogue run together, but nothing this lengthy. Poor K was trying to nicely respond, to acknowledge Neil and converse with him. He’s been at our house so many times over the years that he’s quite used to Neil’s different way of communicating, but he wasn’t sure what to make of this. I decided to gently intervene.

“Neil? What are you saying? Can you use your own words?”

“I’m just making polite conversation!” he shot back. I’d be willing to bet money that this was also a line from something, just by the way he said it.

“When you’re having a conversation, it’s best to use your own words so that people know what you’re talking about.”

“You don’t need to say things from movies,” Adam added gently.

“It’s not from a movie! It’s from a book! Alice’s Adventures in Wonderland!” Neil growled.

“Okay, well, how about if you just eat now?” I suggested. I really didn’t know what else to say. I knew he’d been reading that book (the original) for several weeks, but I had no idea he’d been memorizing it. And why the sudden inappropriate monologue? He’s done much shorter versions (of delayed echolalia) in the past when we’ve had multiple people at our house, or in unfamiliar situations, but I couldn’t figure out why he needed to do it last night. Was it a sign of a mini-regression? A conversational test on someone familiar? What gives?

I gave it a lot of thought, and then it hit me. It’s because he’s autistic, of course. His language development was extremely late and labored. The art of conversation is something that may always be out of his reach. Yes, he can communicate. At this point in his life, he usually does it fairly well. But communicating and conversing are two different skills, and the skill of conversing is something with which he will most likely continue to struggle.

We often say, “Two steps forward, one step back,” or a variation thereof.  I could choose to look at last night’s conversation attempt as a step back. But in reality I think it was sort of a side step, a lateral move. He was testing the waters. In fact, I talked to him about it later when we were alone, and he confirmed my theory.

“I just wanted to try something new. I thought it would be fun. K seemed to handle it fine.”

“Yes. That’s because he knows you really well. But it’s probably not a good idea to do that with people who don’t know you very well, because they won’t understand.”

“I just don’t feel like I could give it up.”

“You don’t have to give it up. Just try to only do it around people who know you well. Okay?”

“Okay.”

I think maybe it was a step forward after all.

Image credit:  ‘Robert Owen-Wahl’

The Lights Are On

“Mom!” Neil calls from inside the house. “Don’t forget we have to go to the animal shelter!”

“I won’t – I’ll be in in a minute!” I am hanging up the last strand of Christmas lights around the front roofline of our home and can barely feel my fingers. It is late afternoon, and there is still frost from this morning on all of the vegetation in our neighborhood. Baby, it’s cold outside. Cold and dry.

I climb down from the ladder, put it away, and plug in the lights. Then I step back a bit to view my handiwork. Hmm. Strange how those eight bulbs worked just fine when I tested the lights forty-five minutes earlier, before stringing them up. Oh, for crying out loud. Sometimes I wonder why I bother.

I run in the house and wash up, calling out to Neil to see if he’s ready to go. Every Sunday afternoon for the past several weeks, we’ve volunteered at our local animal shelter as part of a community service requirement for his next level of Boy Scouts. The animal shelter welcomes under-18 volunteers as long as their parents accompany them. And so, we both go.

Initially, I resisted this time taken out of my much-needed and usually full weekends. How could we – I – possibly fit it yet another activity? How could I possibly get everything done? When was I going to squeeze in some down time? I already volunteer for the Autism Society of Oregon and various other Scout activities. Furthermore, we have pets at home to take care of! I didn’t have time to volunteer to take care of more animals! I did realize, of course, that this was the perfect opportunity for Neil to get in his community service time for Scouts. The animal shelter is only a five-minute drive away, and Neil loves animals. I decided to grin and bear it.

We get in the car and drive to the shelter. I laid down the law before we even started there four weeks ago: No new pets. No matter how cute they are, no matter how much you love them, no matter how long they’ve been at the shelter. Neil had agreed. But after a month of being surrounded by cute kitties in need, Neil starts saying things like, “I wish we could afford to take you home with us” when he’s holding a cat and I’m in earshot. I remind him of his irritation with cleaning the cat litter for the cats that we already have. He considers this a moment.

“I know!” Neil exclaims. “I want to start my own animal shelter! That way, I can have lots of cats and have employees and volunteers to help take care of them.”

So. We’ll just add that to the list of potential careers for my son, right up there with inventor and astronaut.  But then I realize that he’s absolutely right. He loves animals and wants to help those in need. And that’s exactly what he told me when I asked him why he wanted to start an animal shelter. I said that we could certainly look into it.

Meanwhile, my grin-and-bear-it time has turned out differently than I thought it would. I find that while I’m holding and petting the adult cats and playing with the kittens, I’m not thinking about anything else. I’m not stressing about the things that I’m not getting done and the time that I’m losing. I know! Can you believe it?! I just sit there and relax! There’s no computer, no phone, no calendar, no errands. It’s actually just what I needed.

The hour passes quickly, and we sign out and go home. When we pull up to the house, Neil comments in a dry tone, “It seems like some bulbs aren’t working.”

And the best part is that it doesn’t even bother me.

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.

Vague Catharsis

Ed. note: Apologies for the cryptic nature of this post. And thanks for reading it anyway.

There are times when I think it would have been advantageous to have made this an anonymous blog. Times when I wish I could tap into the cathartic quality of blogging, write about what happens, what I struggle with as a parent. But sometimes I can’t. And this is one of those times.

It was discovered this morning that one of my sons committed an infraction against my other son, sight unseen. It was the type of thing to which some people would just say, “Oh, that’s what siblings do,” but that’s not what I say. It was the type of thing where the guilty party could blame it on certain organizational deficits instead of admitting fault. It was the type of thing that, if not stopped now, could easily grow into a problem that would later involve others besides his sibling. And it’s the type of thing that I will not specify because I don’t want to violate his privacy.

Of course, the morning rush is not the time to handle such infractions. Not only that, I needed a plan. What I wish I had was someone to bounce strategies off of, someone to whom I could say, “How do you think we should handle this?” That would entail there being a “we” involved, and since there is not, I somehow got though a busy day at work while bouncing ideas off of myself.  I allowed myself a quick moment of self-pity while checking my e-mail. And then I got my answer – at least part of it. It was the day’s post from Daily OM, and it was exactly what I needed. It was a way for me to start off by telling my son that even if something he does seems insignificant, it’s not. “Everything You Do Matters,” the title said, and the post described how our actions, both positive and negative, cause a ripple effect that spreads to many more people than we can ever realize. I printed it out to read to my son when we got home, and I spent the rest of the day coming up with ways to expand on it.

At home, the plan, which I had gone over in my head all day long, backfired. My son was defensive and vehemently denied doing what he’d been accused of, even in the face of overwhelming evidence, even though I’d approached the subject in a calm, diplomatic manner. I was not pleased. It was bad enough that he had done it, but then to deny it? Not cool. However, in a moment of what could only have been divine inspiration, I told him that we would be spending the next few days doing a certain thing that would either disprove his alibi or vindicate him. (I did not use those words while speaking to him, of course; I reserve all the fancy wording for the blog.) But what I said next was – I think – what made all the difference. I told him, sincerely, that if it turned out that he did not do what he’d been accused of, I would be the first to apologize for not trusting him. And then I left the room.

I sat at my computer, logging back in to do more work. I tried not to fume. I tried to let it go. The confrontation was over; I had done my parental best. But what if this was the beginning of a terrible habit? What if, in not wanting to be a Gestapo parent, I hadn’t done enough to stop it? Parental guilt gets me either way. I sat there in its grip, unable to reason, unable to see past the moment.

Fifteen minutes later, the son in question walked into my office. He sat on the floor for a few minutes, petting the cats and sighing audibly. “Are you all right?” I asked, still going for diplomacy. And then, I heard the magic words. “I have something to tell you. I’m just afraid you’ll be mad at me.”

Relief washed over me as I realized that maybe, just maybe, I’m getting through to him. We talked, and it was good. We talked about what it means to have integrity. We talked about doing the right thing. We both shed a few tears. Later, he apologized to his brother, and although I didn’t hear the exchange, I was told separately by both parties that it was positive. You know that saying about parenting being the toughest job you’ll ever love? Every day is a testament to how true that is. And if your wording is vague enough, you can blog about it anyway.

Image credit: B Cleary

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.