Taking the A-Train, Part II (I Think)

This is a follow up post to Part I.  But I repeat some of that post here.  So maybe forget Part I.  But there is new stuff here so this is really Part 1.5. (Shut up and tell the story already!) If I “shut up,” though, I can’t technically tell the— (Really? This is how you talk to people?)

Okay then.

Aong the myriad changes to my life this summer, I began taking a new drug: Adderall.

After visiting a new ADHD specialist, I started on Adderall XR 20 once a day.  After a few days, the plan was to taper in Wellbutrin as well, after I described my depression as “severe” (with accompanying documentation)  The first day I took the Adderall, I felt relaxed and clear.  I took it in the morning and did my usual mental check.  How do I feel about finances?  Job? Mortality?  All topics returned positive thoughts.  It was a Saturday, and my wife and I had a good long talk about difficult topics: the finances, aging parents, our kids’ autism, our younger son’s cancer, etc.  I felt unburdened; I could send my thoughts anywhere without the automatic anxious responses. I could see my way to fixing many problems that have been ongoing, even those that I have always had trouble with since leaving home for college about a bazillion years ago (okay, it was 1989).  Those things being finances and getting things done in general.

But I cautioned myself.  Being on Adderall was a new project.  It was fun and untainted and full of possibility and lacking any failure suitcases.  After a second day of feeling good and getting some things done, I took a risk and had an antihistamine.  I have seasonal allergies, but I find that taking any kind of medicine for them gives me bad mood side effects (in that I seem to hate everyone and want to crawl under the bed) so I endure the allergies rather than experience those side effects.

English: Adderall

I slept well that night and started the Wellbutrin the next day. I felt confident about the anti-depressant because I had taken it years before and it had worked adequately. The idea of the new stimulant together with the antidepressant seemed like a potent combination to battle my sitting-around-ness.

However, something in that mix did not sit well with my brain.  My wife and I ended up in a big fight about nothing and I ended up taking a long walk around town to cool off. My wife called a friend over to stay with the kids and went looking for me in the car because I seemed too unpredictable.  I was sure it was the antihistamine and took another Wellbutrin the next day.

I didn’t have another tantrum, but I ended up with the same problem when I started Wellbutrin years ago: insomnia.  I wasn’t willing to wait it out this time, though, and felt like the depression had lifted with the Adderall anyway, so I chucked the Wellbutrin idea.

For the first two weeks, it felt like the positive change I was hoping for was just around the corner.  I saw clearly how to fix broken things in my life, and the steps were attainable.  There were so many of them, though, that I had made little actual progress.  That, and there is always the backdrop of my son’s cancer to consider.

I started to notice the first side effect of the Adderall: jaw tension. Adderall cuts me off from certain body signals. I can have a bad night’s sleep and still function okay and not have the crushing sense of fatigue that I’ve always felt. I am also less hungry.  Instead of stress affecting my whole being, stress seems only to affect my mouth.  My lips get tight and I have the urge to clamp my front teeth together.  From doing yoga and practicing mindfulness, I know I typically carry anxious tension in my body, but my normal jaw clenching is my back teeth.

tiny mouth

tiny mouth

On Adderall, when I start getting “tiny mouth,” I have to think to figure out what’s going on with my body.  Oh yeah, haven’t eaten in six hours. Or only got four hours of sleep last night.  The jaw tension also happens when the slope turns and the stimulant starts to wane. Normally hunger and fatigue would be right there without my having to think about them.

The Adderall effect feels different from the Ritalin.  On Ritalin, I’d upswing (which I hesitate to call a “high,” because that suggests a hopped-up feeling) for an hour or two.  I’d feel energized and calm and, on good days, have a sense of well being.  Then it would drop off and I’d feel like my baseline anxious mess of a self.  And then take the next pill.  I’d take as many as five a day and be up and down that roller coaster.

If you’re a coffee drinker, my Ritalin experience was like having that first good cup of coffee after you wake up and then within two hours going right back to just having got out of bed and everything sucks feeling. And doing that several times a day.

At the end of the day I’d feel exhausted from all the yo-yo feelings, and my depression would creep in there and make me feel hopeless.  God forbid I’d wake up in the middle of the night.  I would be so far away from Ritalin at that point that I would feel like I was dying. Some nights I was sure that I had completely stopped breathing in my sleep and only through some miracle had woken myself up and started breathing again.  Try going back to sleep with that thought in your head.

I had tried to remedy the roller coaster feeling with Concerta.  The timed release is supposed to give you a more steady feeling.  On straight Ritalin, I took 40 to 50 mg a day.  On Concerta I was up to 54 mg a day without the positive effect.  Also, with the Concerta, I had no options after it wore off. It was impossible to work in the evening.

English: Kirnu, a steel roller coaster in Linn...

The next option was to boost the Concerta, but I couldn’t understand why 54 mg of Ritalin inside the mechanism of Concerta did not work as well as 40 or even 30 mg of plain Ritalin.  My doctor was also concerned about my blood pressure which was testing at borderline high.  More Concerta could increase my blood pressure.

I now know that my family doctor was the wrong person to manage my ADHD meds.  The new doctor, the ADHD specialist, said several things about why my treatment wasn’t working.

  • First, some people respond more to the slope of the medicine rather than the level.  Concerta has a more gentle slope, so it’s not uncommon to need more of that than straight Ritalin to get the same effect. And plain Ritalin has a vicious down slope.
  • Second, if I was taking time release pills, I needed to have a “booster dose” of non-time-release stimulant on hand if I needed to work late.
  • Third, the way my family doctor measured my blood pressure was all wrong. I’d barely get into the office and after the nurse would ask me a stream of stress-inducing questions (when was your last physical [25 years ago] did you have your flu shot [no] why not [um . . .]). Then he or she would take my blood pressure while I sat uncomfortably on the edge of an exam table.

My new specialist waits until we’ve been talking awhile and lets me sit in a comfortable chair the whole time.  If I test high, he moves my arm to a more relaxed position, lets me breathe a couple times and then remeasures.

He said the other method virtually guarantees a wrong reading.  I bought a home blood pressure kit and thought it didn’t work because the readings were so different from in the family doctor’s office. (My other doctor was aware of this “lab coat syndrome,” but his solution was to get it monitored somewhere else on my own. To quote Bugs Bunny “He don’t know me very well, do he?”)

The upshot of all this was that I had plenty of room to go upwards on the Ritalin/Concerta route if I wanted to.  I was ready to be done with Ritalin, though, and he thought the slope of Adderall would work better for me anyway.

Adderall XR felt very good, but left me without much benefit after 4:00 p.m.  He told me to call if I needed a booster dose, so I did and left a message.

If you don’t know, ADHD stimulants are controlled substances because people abuse them.  My personal and unscientific opinion is that if Ritalin and Adderall were naturally occurring in coffee beans, they would be a regular part of our society, and if caffeine were only synthetic, it would be a controlled substance. I had plenty of friends who abused caffeine in school; No-Doz and Jolt were the study aids in my day.  Plenty of people are addicted to caffeine and use it daily as a “crutch.” Also I can’t make out why alcohol and tobacco are legal and marijuana is not. (Climbs down off soap box.)

Because stimulants are controlled, they are less convenient.  They can’t be called in, no refills are allowed, and there’s a limit to how many you can get at one time.  I have to physically take a paper prescription to the pharmacy and often have to show a driver’s license. I worried about how this might be a problem with my new specialist being an hour’s drive away.

I called and left a message and didn’t hear back and was feeling worried that maybe this was not the best place for me to be going after all.  I was thrilled to be proven wrong when a new prescription sheet arrived by mail within three days.  And it had a neon green sticky note attached with a reminder of my next appointment!  The significance of this cannot be overstated: not only are sticky notes important to my life, but neon colors are essential; pale yellow ones just don’t cut it.  This practice knows how to work with ADHD people.

Overall, the feeling of Adderall is more steady.  It is indeed a long slope and does not have that horrible drop off.  I do have the occasional what are you doing anxious thought at night, but without all that inconvenient existential dread.  I feel almost like a normal person sometimes.

On the downside, I am more blunt in my speech and say things that I intend to be funny that come out as mean.  I forget to eat sometimes and I eat less overall, but I can afford to miss a meal or two. (Dear Taco Bell: Fourthmeal?  I scoff at your paltry little number!)  I have to be careful not to take a booster dose too late or have too much caffeine or I have trouble sleeping. There is a slight decline in sexual response.  And the weird mouth tension thing.

But overall I felt much more positive and focused and less anxious and avoidant.  Until the end of my summer got messy.  But that’s for Part III.  Or maybe Part 2.25.  Can you do decimals in Roman numerals?

Taking the A Train, Part I

Two months since my last post, whaaaat?

Summer time is always busy, but geez. Being Cancer Dad will sap your time.  At the moment, I’m staying in the hospital with my son (we’re on day 5 now) so I’ve got to write or risk climbing the walls.

On the AD(H)D front, I went to see an ADHD specialist about six weeks ago.  He’s a physician who specializes in ADHD treatment.  I had a recommendation from a friend about a year ago to see this guy, but, ahem, ADHD.

I went to see him on a Thursday morning his office is in East Grand Rapids, a tony part of town (there’s a yacht club, for Pete’s sake!).   EGR is about an hour from my house, and I had taught a class the night before in Grand Rapids and decided to stay over with my brother who lives downtown GR.  I did not sleep well, unfortunately, and was quite tired that morning.

I found my way to the Sundance Grill for breakfast, had some fabulous breakfast tacos, but felt weird dining alone at a place with table service. I kept eavesdropping on all the business meetings going on all around me.  The best conversation was at the next table; a business man from Ecuador was being entertained by a local guy.  At first, I thought the local guy was being kind of rude, all he had to go on was stereotypes.   You like soccer down there, right?  But it turned out Mr. Ecuadorian returned those stereotypes right back. You all play baseball up here, yes? Mr. Grand Rapids said he actually didn’t like baseball all that much.

I got to Gaslight Village early, found the doctor’s office, then hit the Starbucks down the street to wait. My nerves were getting the better of me.  As I said, EGR is a tony part of town, and I was surrounded by very successful looking people in sailing, tennis, or yoga outfits, with the occasional hipster thrown in for seasoning.  I’m more at home in the university crowd with a bit of earthiness thrown in by going to my local Biggby’s in a college town, where someone wearing Carhartts might have just arrived from a construction site or an art history class (or both).  In all honesty, the pending appointment probably kicked up my hyperawareness a notch; my first meeting with a psychologist many years ago I started to question the choice of magazines and muzak in the waiting room.

I forced myself to wait long enough not to arrive too early, and then walked into the door of the doctor’s second-floor office at five minutes before my appointment.  The office was empty, not even a receptionist.  Knowing that this doctor himself has ADHD, I wondered if he forgot my appointment.

Instead, he appeared at the door and said “You’re early!  Remarkable!”  I guess not too many of us ADHDer’s show up on time.

I took a seat and he got ready for me.  I went in a few minutes later and we started the consultation.  I had very thorough testing before, so he didn’t see the need to re-test me, and instead we talked about why I had come.

I talked about being on Ritalin and that it was sort-of working sometimes.  I got about two hours of benefit from each 10mg pill and then felt terrible when it wore off.  I had filled out extensive paperwork ahead of time with medical history and self-reporting of symptoms and we went over that. (Another sign that they were used to dealing with ADHDer’s: the staff would not schedule an appointment for me until after I had filled out and returned the paperwork.)  I also talked about my son having cancer and my needing to have more executive function so as to be more reliable and available to support him and my family.

We talked about my issues, such as not being able to get things done on time, not being able to stop doing things that I get involved in, my unreliable performance, etc.  I also talked about how I couldn’t understand why Concerta didn’t work for me.  On straight Ritalin, about 40mg a day seemed right (four 10mg pills) but the constant roller coaster was exhausting.  I felt constantly fatigued and downright hopeless most of the time.  On Concerta, I never got the full feeling of benefit even though I was taking 54mg (Concerta is Ritalin with a time-release mechanism).  And I had been working with my GP who basically let me decide what to try (“sounds like the wrong person is driving that bus,” he said).

The doctor had the simple answer to this confusing problem: “Some people respond more to the slope than the level.”  Ritalin has a sharp up and down level in the bloodstream.  The dose of Concerta I took had had a higher overall level, but a relatively weak up slope.

Oh.

We talked through various other things and then he said I had sat long enough for my blood pressure to calm down.  My blood pressure always measures as borderline, but I was just the high end of normal, even though I had been nervous.  “Perfectly normal for a stressed-out dad.” At my GP’s office, they take my BP as soon as I get there, so I always measured higher than when I measured at home.  He also took my weight and height and, demonstrating his ADHD, forgot what my weight was in the time it took to walk over to his computer to record it.

He went through a lot of PowerPoint slides on his computer, showing me the different slopes of different drugs and talking about brain scan studies.  He was careful to say that the brain scan stuff is easy to oversimplify and overdetermine, but (putting it simply and deterministic) my brain is inefficient because it tries to use emotional motivation for almost everything instead of more logical motivation when it is appropriate. (And that everyone is always a mix of emotional and logical motivation.)

That trend in my brain is both inefficient and exhausting.  It means I have to be “in the mood” for everything, even routine things that should not have an emotional investment, and that I spend my life trying to generate mood and feelings to motivate my work. I felt that was an apt description of what I feel going on in my head.  I told him that when I need to write, one trick I use is to Google Image search for writers, writing desks, writer’s studio, etc. Looking at those pictures gets me in the mood to do the work a lot of the time. He thought it was a great example of using creativity to work the problem.  One of the biggest problems I have is switching gears.

So I left with a prescription for Adderall XR and Wellbutrin. He had noted I was reporting depression symptoms and asked me to rate my depression on a scale of 1 to 10. My answer was 8.5, hence the Wellbutrin.  I was to start the Adderall first for four days, then start on a low dose of Wellbutrin.

I also had an appointment in a few weeks and a fat bill I had to pay up front.  This office does not bill insurance.  That’s something that made me put off getting my first appointment, until I read this in Jennifer Koretsky’s Odd One Out:

In the United States, most insurance companies reimburse health care providers so little that they are forced to see 4–5 patients an hour just to make a living. This is unfortunate. And it’s particularly dangerous when a healthcare provider who sees you for 10 minutes a visit is your psychiatrist, or other doctor prescribing your ADD medication! I always recommend that my clients see a psychiatrist for their ADD medication. And, due to the current state of the U.S. health insurance industry, it’s not uncommon for a psychiatrist to stop taking insurance once they have established a practice.

While this doctor is not a psychiatrist, the insurance bit seems to apply.  I have good insurance, so it will be paid for, but I have bad follow-through and may not get around to submitting my claims.

Next installment: All Aboard!

You must take the "A" Train ...

You must take the “A” Train … (Photo credit: keithcarver)

ADHD Cancer Dad

As I’ve written on the other blog, we’ve made it through the first rounds of chemo and are at home.  My son spent eight days in the hospital, and I spent quite a bit of time there alone with him.  My wife and I had to trade off.  We live an hour from the hospital, and since both our sons are autistic, one of us had to be home with the older son. We had no time to prepare.  We went from what was supposed to be a quick follow up appointment to being admitted to the hospital within a couple hours and started chemotherapy within 24 hours.

I used a lot of my ADHD coping techniques throughout the stay.  I kept a notebook with me at all times to write things down as they happened.  I brought sticky notes with me, and kept a wall of sticky notes for important things to remember or to tell my wife when we traded off.  Just like at home, she left notes for me as well.

I did have to explain more than once that I have ADHD.  There were so many doctors, nurses, and other staff that I could not remember names, of course, and had to explain to some people about my problems with name recall.  My son’s room had a whiteboard and they wrote in who was on staff each shift, which was very helpful. Also, everyone wore name tags, which would be helpful in the rest of my life.

I also could not turn off my observational/figuring things out mindset which sometimes proved to be an asset.  I noticed which nurses were more patient-advocate types and which were follow-the-rules type and was able to work that knowledge when I needed it.  For example, one of the follow-the-rules nurses asked me to tell the procedure room to change out the needle in my son’s port because it had been a week (a “port” is a device under the skin in his chest leading to a blood vessel that makes it easy to start an I.V. and it’s a lot easier to deal with than a wrist I.V. ).  It did not occur to her, however, that since he was going home the day, that the procedure would be pointless.  Also, even though he had the port going, the hospital wanted to keep an unconnected wrist I.V. installed for three days because of an upcoming CT scan (they could not inject the “contrast” into the port).  That would have meant having his hand all taped up and having to flush it every eight hours.

I asked that since he had the port installed and that they would be giving him the sedative before the CT that they could take out this I.V. now and just put in another after he was sedated. Since we were dealing with upstairs/downstairs bureaucracy, that hadn’t occurred to anyone.

I also thought that since there’s a computer in every room, there should be a screen for the parents to look at that showed the medication, procedures, and vital signs.  He was not eating for a time and losing weight, and I kept having to ask about his daily weight. I also lost track of all the medications he was taking, including the chemo and the medication to control the side effects, and they gave us a nice summary sheet at the end that I wished I had access to as it was going on.  The discharge nurse thought that was a great idea.

My affinity for video games helped out my son, too.  They brought us a Wii console, and we spent some of his happiest hours there playing Mario Karts and Mario Party. 923359_10200931456958005_1446469144_n

The Ritalin helped me a lot.  I knew when the doctors were coming, so I was sure to be properly dosed for them.  Also, it made it much easier overall to advocate for my son.  Although the hospital was excellent, there were still better nurses than others.  Most of the nurses piled up their work at night in as few room visits as possible so as not to keep waking us up.  One nurse, though, came in several times on her night shift and turned on some of the room lights each time.  After that, I made sure to talk to each nurse to make sure that didn’t happen again. I did not get a chance to talk to the resident, though, to tell her you’ve got to at least give a person thirty seconds to wake up before you start speaking at length about the forthcoming day.

Also, more than one person thought that if I was writing things down I wasn’t listening. They kept saying “I’ll give this to you so you don’t have to write it down.”  I had to explain that writing things down helps me process and focus on what’s happening.  I also thought it was silly to withhold the paper until after the conversation.  Why not just give me the papers first, so I could write on those?  I think they held myth about eye contact and paying attention. People assume that everyone processes and learns information the same way.  I am reminded of this when I encounter people who do not “get” charts and graphs.  I love a good visual model for complex information, but for a lot of people that’s just hieroglyphics.

Now that we’re home and through the first stage, the next stage for me is dealing with the rest of my life, which was hard enough before.  This experience does help my focus in some ways.  I cut back on some projects.  Things have to be done on a schedule, which helps. There’s a daily meds schedule on the cabinet in the kitchen.  This semester ends today and my grades are due on Monday.  It’s going to be a challenge to meet that deadline, and deal with all the work piled up in all areas of my life as well.  Another positive result, though, is that I learned to ask for help more.  I’ve always had the mindset that I have to do things on my own, and that asking for help is some kind of weakness or failure.  It seems silly to write it, but that’s my brain at work.

The Umbrella Story

Since I had plenty of time to get ready this morning, I put off getting ready until the last minute.  My son went back to school today after a week of spring break. After he got on the van at 7:30 I had until 10:00 to get ready for my first class.

With that much time to get ready, I did the perfectly reasonable thing: I sat down, drank coffee, watched Morning Joe (which, despite my ranting, I still like as a morning news show) and did some writing.  At 9:30 I realized I was still wearing a bathrobe and my jeans were still wet in the washer, so I put the jeans in the dryer on high and then began my usual morning rush to get ready.

I got through my morning class and realized I had forgotten my power cord for my laptop.  Since I had a full day of conferences planned and I do all of my grading on the computer, power was a necessity. I had a break from 11:00 to 11:20, just enough time to walk home and get my cord.

At 10:58, rain began to pour down outside.

At first, I thought I could just grab a copy of the campus newspaper to get me home, but when I got to the door, I saw that the paper umbrella plan would last about thirty seconds. I went back to my office to ask around if anyone had an emergency umbrella.

My office neighbor said she did, rummaged around and gave me a bright yellow umbrella about the size of a hot dog bun.

“Wow, that’s small,” I said.

“Well, you’re a big guy and—“ she shrugged.  The shrug I understood to mean beggars can’t be choosers.

“I’m going to look like a circus monkey,” I said, grabbing the umbrella anyway. “Maybe I could get a tiny tricycle too?”

“I’ll try to hook you up with an organ grinder,” she said, and went back to work.

I went back outside and the umbrella proved to be just large enough to cover my shame.  My hair kept dry, but my pants, having only in the last few minutes gone fully dry after I had to pull them out of the dryer at the stage of dry-enough-to-wear-but-still-kinda-damp started to get wet again.

I arrived home, stuck my power cord in my pocket, got my giant golf umbrella (I do not play golf, but I like the umbrellas) and walked back carrying two umbrellas.

I didn’t know how to hold the now pointless small umbrella. I started to think of the picture I embodied, a giant red-and-black umbrella in one hand protecting me from the torrents of rain and a tiny, limp yellow umbrella held in the other, looking like a dead sunflower in my hand. Maybe people will think I need another umbrella for my feet because I am so tall I thought.  Maybe I could carry it opened, as if to cover an imaginary much shorter friend walking alongside me, a trained monkey perhaps.

I tried not to make eye contact with people.  How could you explain such a sight?  I kept the umbrella over my eyes until I passed another young man without an umbrella and then heard Sir? Sir?

Oh great, I thought.  Someone wants to make conversation.  Maybe I had him as a student and he wants to make this a reunion in the middle of the rain.

I tried to pretend I didn’t hear him and kept walking, but he was insistent.

“What’s that there?” he asked.  I turned around.

“Um . . . an umbrella,” I said, trying to make it sound self explanatory.

“No, I mean, can I buy it from you?”  He looked cold and wet.

“Sorry,” I said as nicely as possible.  “I borrowed this; it’s not mine to sell.”

The next logical question would be for him to offer to buy my big umbrella.  I could just give the big one to him.  But then how would I get it back?  Would it be my good deed of the day, or would it devolve into him wanting to bring it back and do you have a piece of paper so I can write down your address?  The potential conversations swirled in my head, fueled by coffee, Ritalin, and the fact that there were exactly three minutes to get back to my office.

“Oh, okay,” he said, smiled, and trudged on.

“Yeah, ah, thanks anyway!” I said.  Thanks anyway?

To avoid any further confrontation, I hid the little umbrella inside the big one when I got back to my office building.  It made my big umbrella look pregnant, but at least I would not have to explain two umbrellas.

“Raining out there, huh?” someone said in passing.

“Yes.  Yes it is.  Raining,” I said. What else is one to say?  Oh yes, and there’s oxygen too!

I got back to my office suite and delivered the large umbrella of its surrogate child and related the story back to my friend who loaned me the micro umbrella in the first place.

“Why didn’t you sell it?” she asked. “I could have used the money.”

I didn’t have an explanation, but I sat down with seconds to spare, just in time for my next student. Who never showed up.

Monkey School de Mae Rim

Gratitude Friday

Things I’m grateful for today:

  1. It’s week three for Gratitude Friday.  Two weeks longer than my track record would suggest.
  2. I sat working late in my basement office last night and heard my son sing “Somewhere Over the Rainbow” in his room above me as he was settling down to sleep.
  3. I got to take the kids to Chuck E. Cheese’s this week.  Ritalin made that fun instead of dysphoric. (Not such an easy feat with a child who is allergic to dairy.  The word cheese is on the door, for Chuck sake!)
  4. It has only snowed once so far this month.  Yay Michigan.
  5. This happened.  Consider me wussified. And entertained.

Go Rutgers!

Sick and tired of ADHD news . . .

. . . because so many people get it wrong.

Blogs are for complaining, so here goes.

Well-meaning people think that I want to be an ADHD advocate because I have it.  They have the idea that I would be waiting on pins and needles for any new news. Well I’m not.  In fact, I often dread it because all the old saws about ADHD resurface again.  I see ADHD ranking high on Google News and I sigh.

The news that ADHD diagnoses are on the rise is a non event.  It could mean so many things: more ADHD, better diagnosis, worse diagnosis, change in criteria for diagnosis, journalists misinterpreting scientific studies.

Morning Joe had their way with the story yesterday.  Joe Scarborough got going on his usual trope about overmedicated kids when that wasn’t even the news story. The panel discussion wound its way to prescription drug abuse and Joe’s contention that “they” tried to put “every kid” on medication at a certain time in history.  There was talk of stimulant medication as a gateway drug, how high school and college students use illegally obtained Ritalin to study or perform better on their SAT’s.

The subtext is clear: they think ADHD doesn’t exist.

I find the Morning Joe show’s critique of stimulant medication quite entertaining given that their show is a daily three-hour advertisement for Starbucks, and as they make these critiques, they are literally sitting at an altar of coffee beans.   It’d be like sitting around a hookah taking drags while complaining that people need to start taking better care of their health to reduce cancer rates.

Guess what? People use coffee to perform better. People take it to do better on tests, and it doesn’t stop there.  Coffee is a gateway drug.  Alcohol is next.  If there ever was an American way of life, it is uppers in the morning, and downers in the evening.  Once you’re into drinking, well, you know where that goes.  It all starts by getting hopped up on coffee.

So, some more myths about ADHD and medication:

1. Read this carefully and understand it.  It’s the one thing I want people to know. ADHD is difficult to diagnose and treat properly. A lot of wrong diagnoses probably happened in the world.  Children should not be casually be given medication for ADHD like they might be given a pain reliever for a fever or a piece of candy for cleaning their rooms.  A teacher should not be making medical and psychiatric decisions.

All true statements, but none of these things has any bearing on whether ADHD is real or not.

2. For people with ADHD, taking stimulants does not make you “hopped up.”  That’s what happens when you take stimulant medication and do not have ADHD (or have the wrong dose).  Ritalin makes me calm and clear headed, unlike coffee, which makes me manic and jumpy (read: hopped up).  Ritalin stimulates the executive function so all that other craziness settles down.

3. The fact that people without ADHD abuse stimulants has no bearing on the reality of the disorder.  The premise of the story is that these people do not have it.

4. Everyone is not “a little ADHD.”  That’s insulting.  If you’re saying that, you’re saying that those of us with ADHD are just not trying hard enough, that we are moral failures for our disorder.  We’ve been hearing that most of our lives. That’s long enough.  Everyone responds to stimulus differently. Everyone.  That means that plenty of people experience the world differently from you and me.  I see a roller coaster and I think “fun!”  Other people see the same roller coaster and think “death train of fear and vomiting.”  Still others see “kiddie ride: boring.”

5. Medication is not “just a crutch.” It may be a crutch, but not “just.” And what’s wrong with crutches? Are you going to deny crutches to, say, a person with spinal bifida? (I know that he was deformed from birth, but if he just tried harder he could feel his legs.)    Doesn’t everyone need support in doing difficult things?  If you say this to me, you’re saying my choices are either to flounder around miserably or do my work but feel like it’s not “real” work, that it is somehow diminished because I took Ritalin first.  Is my work any less real than someone who drinks Red Bull first? Or eats chocolate while working?  Or takes smoke breaks?

The end.  I feel better. Back to our regularly scheduled content.  Here’s a funny picture.

just funny dogs

just funny dogs (Photo credit: Kemal Y.)

Gratitude Friday

Five things I’m grateful for:

  1. I remembered to post something on Friday.  I started a trend. Two for two.
  2. We ran out of chicken-and-waffles flavored potato chips.  Too much of a good thing.
  3. Ritalin.
  4. The procrastination police have not yet arrested me and sent me to a productivity retraining camp.
  5. The First Amendment of the U.S. Constitution.  Specifically that thing about speech.

English: Fried chicken and waffles with maple ...

Review of _Square Peg_ by L. Todd Rose

squarepeg-8-8-VER-8-198x300Square Peg

L. Todd Rose

with Katherine Ellison

Hyperion

http://www.amazon.com/Square-Peg-Visionaries-Out-Box/dp/1401324274/ref=tmm_hrd_title_0

Book drawing here.

 

ADHDer’s have trouble fitting into an executive functioning world. L. Todd Rose makes this point throughout his book Square Peg: My Story and What it Means for Raising Innovators, Visionaries, & Out-of-the-Box Thinkers. Readers of this blog will know my own experience in illfittedness. But, being it’s my blog and all, I shall explicate.

How about a top ten list? Too many? Five, then.

1. I grade papers well sitting down with a student. On my own: procrastination followed by panicked overwork.

2. Bills never get paid on time if I have to write a check and mail something.  Even when there’s plenty of money.

3. I am good at developing basic competence in many new endeavors.  I am terrible at actually accomplishing anything with said competence.

4. I am extremely good at finding time to work, performing maintenance, and managing money and possessions . . . in a video game. My executive function is legion in Borderlands. (Photo below)

5. Being successful in the line of work and life I’ve chosen requires steady effort over the long term.  My work habits are cyclical, intensive, and frequently abortive.

Rose’s book is framed around his story of a rise from a near-dropout to a Harvard professor. Yep, Harvard, it’s true: http://www.gse.harvard.edu/directory/faculty/faculty-detail/?fc=81464&flt=r&sub=all.  I had to check, I’ve been duped before, like that one time with that job offer from Havrad Univresity (Nigerian emails are so creative).

Like many people who work in the ADHD field, Rose has lived with it himself (even his ghostwriter/cowriter Katherine Ellison has ADHD; I can only imagine the Hyperion editors pulling their hair out [it’s really hard to write a book when you have ADHD; I’ve tried at least a dozen times]).  I used to wonder about ADHD coaches who themselves live with ADHD, but then I remembered my own writing practice;  I am good at helping students with writing processes, with talking through different strategies, with coaching them, so to speak.  My own practice? See #5 above.

Rose’s research, practice, and theory stem from the idea of “complex systems.”  When applied to behavior, the theory is that “all behavior emerges from the constant interaction between a person’s biology, past experiences, and the immediate environment, or context.”  His advice (for parents and/or adults dealing with ADHD) echoes my own concept about the disorder, which goes like this:  if a person is languishing and can’t perform, there are three things that can be altered: change the person, change the task, or change the environment.  They can be altered in combination, of course. In fact, I think that a good program of therapy addresses all of them.

My own plan of attack, for example, is

  • Medication, supplements, and nutrition
  • Yoga, meditation, and exercise
  • Picking projects that increase the chances of my success (lots of face time and accountability)
  • Creative outlet (defined broadly: can be anything from poetry to gaming)

When I can get all these things going and when the creative output happens to coincide with something that I honestly feel is productive, especially in a professional sense, I perform very well and have peace of mind and fulfillment.  When some things start to slip, then my life tends to get stuck. I completely agree with Rose’s position on medication—used carefully it can be a tool to help. Ritalin has helped me in many regards, but without the other pieces of my plan, I might as well be downing Tic Tacs.  The surest sign of a downward trend is when I get preoccupied (okay, obsessed) with my “creative outlet” of the moment (which has included guitar playing, woodworking, cartooning, blogging, writing, gaming, running, bike-building, reading, photography, job hunting) and start to neglect basic responsibilities (sleeping, eating, email, being a father in any sense beyond legal).  To use Buddhist terms, I start to “take refuge” in my hobby of the moment because all the regular stuff of life is either too boring or too stressful.

Rose heavily emphasizes context.  I’ve seen it in my own work and could never understand why I could work brilliantly and with ease one day and like a drooling inebriated cowering fool the next.  But it’s easy to understand with my own “plank” example (I really should write about the book more in a book review . . . sigh).

Take a plank of wood.  Say it is twelve feet long and a foot wide.  Put it on the ground.  Walk from one end to the other, without stepping off.  Easy, right?  Now, string that plank between two adjacent buildings, say, fifty stories up.  I’ll even give you a nice, calm day.  Okay, now walk. Go ahead, just toodle across there.  What’s wrong with you?  You did the same exact task down there on the ground!  You’re just not trying hard enough.

Back to the book, another key concept from Rose is “variability,” meaning the many variations in human brains.  A prime example: the relationship between stress and learning: “A little stress can help someone learn, while too much stress prevents it. The optimal amount of stress varies from person to person.”

It’s a simple idea, but what great insight!  In my many years as a college professor (yes, I managed to hang on to this job, despite my significant deficits) I have seen this in action.  Many students respond well to the “stress” of the traditional classroom: due dates, having to show up and explain yourself if you don’t perform, the pressure of grades and such.  But by “many” I’m not even sure I mean “most.”  I’ve often taught people on the fringes.  I started by teaching “remedial” writing at a time when our institution was flagging and we had open admissions.  Most of my students were struggling, not just as writers, but as college students.  As such, they had widely varied responses to stress: ignore it, resent it, negotiate, panic.  I had bad advice from a former colleague: you’ve got to show them who’s boss and lay down the law. After two months of trying that and meeting chaos in return, I started just to listen and talk honestly.  World of difference!  Even though they all struggled, they all struggled differently.  Understanding them as individuals helped enormously.

Likewise, today I teach a literature class for students whose primary interest is definitely not literature.  After trying many things, the simple solution was to learn about them, take their concerns and points of view seriously, and help them figure out how to meet the course goals in their own way.

Through all my trials of different ways of going about teaching (mostly because I was never satisfied with my own performance) I’ve seen students respond to varying policies.  Hard and fast due dates with severe penalties makes some students successful, some resentful, and some doomed from the start.  Extremely flexible or even self-made due dates makes, well, some students successful, some resentful, and some doomed from the start, just different students in each model.  A successful learning environment strikes a balance between what students want and what they need.  It’s different for everybody, which is why I like doing as much one-on-one teaching as possible.

In the book I especially like the epilogue, where Rose explores the changing role of technology in education and advocates for using such technology in a meaningful, individualized way, and not for more standardization and cost savings.

Overall, though, I have to admit feeling lukewarm about this book.  Usually I can plow through a book in a day or two, but this one has been sitting around for awhile.  I think it’s that much of this I’ve encountered before.  Had I read it not knowing anything about my ADHD, though, I would have probably read it in a single sitting.

It’s also part of this genre of self help/memoir mashup.  Again, probably my standards are too high on the memoir side being a teacher of writing (and having read thousands of personal essays over the years).  The help part is good, and each chapter ends with a summary both of main points and action items, which seems a plus.

I guess my personal issue is with the subtitle.  I feel like a square peg in a round hole world, but I do not want to be a visionary, out-of-the-box thinker.  I have plenty of visions.  My thinking could benefit from some containment in a box or box-like container.  I just want to settle down and get my work done.

hunter

Professor Pain: master of marksmanship and falconry.
“If I had email, I’d kick its arse.”

Review of “Pills Are Not for Preschoolers” by Marilyn Wedge

My point of view on disorder is eclectic.  I am not a professional, but I am an academic (I teach writing), trained in evaluation of claims and evidence.  After more than a decade of reading about my different diagnoses and trying different strategies, I think that a person’s state of mind results from biology (genetics/physiology/“wiring”), conditioning (past experiences, relationships, internalized ideas), and context (current relationships, environment, and habits of thought).

For me, this all implies that when there is a disorder, there are a lot of levers to pull in many different possible combinations to make things better.  In my own case (ADHD/depression/anxiety) the successful mix seems to be drugs, supplements, exercise, meditation, diet, creative output, more face time, visual organizing, working memory aids, and undoing rigid thinking. (Phew!)

So when it comes to the question of drugs, I’ve had some success. I took Wellbutrin for many years which kept me out of the deeper pits of depression and I currently take Concerta, which helps manage my symptoms.  But I took them cautiously with close supervision and consultation with doctors, psychiatrists, and psychologists.  My view is that they are one tool in a comprehensive strategy to deal with my overall funk. I’ve found no magic bullet, and every day is a step in the process, and medication is one part of that.  And I am wary of putting my own children on these same kind of drugs.

The category of “drugs” is not a neat division either. I get therapeutic benefits from supplements, but for various reasons, they are not given much credence in the medial community.  The result is a lot of wild claims from vitamin hucksters, and stigma in the medical community. In fact, when it comes to my own doctor, he is not very knowledgable about ADHD drugs and took the “let’s see if this works” approach.  Although I had the same experience with my psychiatrist when I took anti depressants.  He took my tendency toward hyperfocus as a possible indicator of bipolar disorder.  His approach: “we’ll try Wellbutrin and if you turn manic and go running through the streets saying that you’re Jesus, we’ll know you’re bipolar.”  I put caffeine in the same category as my Concerta: a stimulant that helps me focus. Here’s an article on caffeine from PubMed, for example: “The most widely used psychoactive substance in the world affects same parts of the brain as cocaine” http://www.ncbi.nlm.nih.gov/pubmed/9889511.  There’s not an entirely clear answer why methylphenidate, the drug in Ritalin and Concerta, is a controlled substance and why caffeine is not, other than force of history.

Furthermore, when it comes the question of kids and drugs, the situation grows even more complex.  My background in critical pedagogy tells me that sometimes schools are more interested in maintaing control, order, and standards, and less in the individual experiences of children. Government bureaucracy also comes into play.

My overall experience with my own children (my 11-year old is clearly autistic, my 6 year old has some mix of autism and ADHD symptoms) in the schools has been very positive.  We’ve worked closely with a team of educators and professionals, we’ve had long-term relationships with capable educators and professionals, but we’ve also had bumps in the road; a highly incompetent special ed teacher, who happened to be the wife of the superintendent, created a preschool classroom with such rigid structure that I suspect most preschoolers—not just the special ed students she had—would have foundered.  Imagine art time being that all kids had to draw the same picture at the same time in the same order; that’s what we observed first hand.  We’ve experienced the pressure to establish a diagnosis in order to meet government guidelines for eligibility of accommodations.  We’ve experienced pressure to medicate.

As I’ve said, we’ve been fortunate with competent, caring professionals across the board. The “pressure” was light, and we’ve been able to cooperatively address our kids’ challenges. But it is not difficult to imagine things going much, much worse. In a large school system, or a system experiencing drastic budget changes, I can imagine a revolving door of professionals.  I can imagine what damage even a few incompetent people can do.

Marilyn Wedge’s book, Pills are not for Preschoolers addresses this milieu.

 

[Enter a drawing for a free copy here.]

The problem with much “anti-” literature is that the topic argued against becomes what rhetorician Kenneth Burke described as an “ultimate” term. Borrowing from Christianity, Burke described the use of “god” and “devil” terms.  A “god” term becomes a stand-in for all that is good, and a “devil” term, all that is evil.  This is an oft-used method for books written by politicians and pundits; think of how often “socialism” is used in the public discourse as a devil term, and how often it is used in a historically wrong way. Regardless of one’s point of view on capitalism for example, increasing taxes rich people is not “socialism”; nationalizing their businesses would be.  The problem is that these ultimate terms become unhooked from concrete definition and rationality.  Ultimate terms are heavy on connotation, but light on denotation. The god terms in much of the anti- genre usually turn out to be something that benefits the writer directly, even if it is just book sales.

Fortunately, that is not the case here.  Wedge is careful to state that family therapy is “no magic bullet,” and in fact one of her first anecdotes was how she was duped by a school diagnosis of ADHD when it turned out the boy just needed glasses.  (Her borderline devil term, however, is Big Pharma.)

What she’s arguing against is the disturbing trend of teachers making diagnoses resulting in children taking psychiatric drugs. The difficulty with ADHD is that there is no simple diagnostic test to definitively make the diagnosis.  The symptoms of childhood ADHD are also the symptoms of being a child, and disorder is a matter of degree. That is not to say that ADHD does not exist; there is brain research to show that ADHD brains function differently.  Instead, the point is that the symptoms are so broad that it is easy to diagnose any resistant kid with it. If a school is particularly rigid and controlling, then there will be a lot of resistant kids. The same is true for Oppositional Defiant Disorder; another psychologist told me she didn’t believe ODD exists, and that it was just a matter of the right context; however, I have a friend with a child who would change her mind!

The problem is that when disorders are trendy and are over-diagnosed and are casually diagnosed without ruling out other problems, children wind up with inappropriate treatments and in the public discourse the idea that these disorders aren’t real gains traction.  It’s that age-old problem of “a little learning is a dangerous thing” or in more recent leadership research, the issue of solutions walking around looking for problems to fix. (How many times have I read “magic bullet” articles on teaching, for example?)

Wedge’s book is filled with anecdotal evidence from her own practice, which may be helpful to parents and educators, and she tends to be anti-meds and anti-diagnosis.  She writes

Narrative therapists view psychiatric diagnoses as “trends”—such as assigning psychiatric labels to children—that take on a life of their own. These trends become the prevalent ways that people in a particular society ascribe meaning to behaviors, feelings, and events.  Narrative therapists encourage therapists to keep an open mind and look beyond the dominant narratives.  They suggest that therapists try to discover alternative stories so that therapy can produce “unique outcomes”

I am sometimes put off by her putting the words autism and ADHD in quotes as if to say they doesn’t exist, but I think she intends to create distance between the conventional (over)diagnosis and the people involved in her stories.

In her work with families, she tries to see the whole picture, which is refreshing; few people directly involved in children’s health and well being do so.  The medical community (which includes psychiatry) tends toward a treat-the-symptoms approach, which bleeds over into schools in the case of children. Her approach is from the therapist/psychologist perspective, so that informs her choice of levers to pull (the relationships/context sort). Still, she is careful to maintain perspective, which is refreshing in a book whose cover and selling points lean more toward “anti-“ literature.  Her view can be summarized by the statement above on narrative therapy; be careful accepting god and devil terms about children’s lives, especially when those terms lead down the path of medication.

Movers, Dreamers, and Risk-Takers: a long and winding book review that ends up being mostly about me.

http://amzn.com/161649204X

Also see my interview with Kevin and enter a drawing for a free copy.

Short Version:

I like it.  Book is fun.

Long Version:

I was contacted by a promoter about doing a review of this book and I agreed.  I like reading and writing, so why not?  When I got the book, though, I remembered that book recommendations from other people are a complicated business.  You see, being a writer and writing teacher, having degrees in creative writing, I’ve developed a sensitive aesthetic when it comes to books.  Sort of the way my wife, a musician with a highly trained hear cannot stand the blues because of all the note bending, so do I have a sensitive ear for language—the other night at the poetry workshop I go to, for instance, I had to explain at length why I loved a poem except for the word “imaginary” that stuck out like a wrong note and ruined the whole effect for me. Yep.  I’m that guy.

So this business of “oh, here’s a book you might like” is a precarious situation.  I read many many books, but I cannot read every book I start.  If something in the writing puts me off, then I’m done.  It’s like being set up on a date by your parents.  Or when my wife’s uncle and I first met; we’re both English professors, so people assumed we would hit it off (we did, eventually; I can almost get past his specialty in 18th century British literature, when everyone knows the 19th century is where it’s at).

So I received Kevin Roberts’ book Movers, Dreamers, and Risk-Takers: Unlocking the Power of ADHD with this trepidation.  Roberts is a writer and stand-up comedian and ADHD coach, and I automatically think hmm, too many job titles, a jack of all trades and master of none.  Even though I fancy myself an English professor, blues guitarist, poet, blogger, publisher, woodworker, yoga-meditation-contemplative educator, and, well, okay, maybe three isn’t so many.

I was also wary of the cover.  It seems like the other 1,001 self-help books out there, promising hope that only if you read this book, you will fix everything in our lives.  My Buddha self bristles at that; the only real problem (that voice says) is our own desires, created by the same media-advertising complex that created the self-help industry in the first place, and that little (or great) feeling of unease that we all have is called suffering and the Buddha says through meditation and mindfulness we take on the desire directly, rather than the impediments to fulfilment. Were he alive today, his book would be The Buddha:  How to Eliminate the Self and Achieve Nirvana in Eight Easy Steps.

Anyway, I start reading, and my English professor/literary self starts to get a bit critical.  Too many linking verbs; cut the word count by 5%.   I read a lot of memoir as well and am a humor addict, so I have a high standard there (like, David Sedaris).  So some of the humor’s not working for me at first.

But then I read the most apt description of my own experience with ADHD I’ve ever read:

Procrastination, although an often annoying and self-sabotaging behavior, can serve to increase cerebral arousal. ADHDers often talk about needing intensity in order to get motivated to work.  While it may always seem like an unproductive behavior, leaving things until the last minute creates a crisis, which then creates the level of neurotransmitters and cerebral arousal needed to stimulate the brain enough to focus on the task.  This is why many ADHDers function well in jobs that require crisis and intensity.

This quote puts together what I’ve read about ADHD neurospychlogy with my experience.  If I had this explanation ten years ago then maybe . . . . It also explains that although I started this review a month ago, I only really got going last night.  Okay, early this morning.  Okay, like 10:00 this morning.

This book is, like most ADHDers, a combination of many things: memoir, humor, psychology, and self help.  There are bits of science intertwined with stories of therapies gone well (and wrong) as well as the adventures of growing up with undiagnosed ADHD in a house full of similar minds: “my family made me seem normal, despite a stream of negative messages from the outside world.”

For instance, here’s my favorite joke from the book:

If, when you ask your kid, “How many times do I have to tell you,” she answers, “Forty-five,” she might be ADHD . . . and a smart aleck.  And, by the way, she is actually correct.

I am reminded of the number of times my wife has told me not to leave the freezer lid open downstairs . . . I better go check it now.

I am also frequtenlty reminded of myself reading this book.  For instance, he writes that ADHDers are attracted by get-rich-quick schemes “because we value our independence and bristle at authority . . . . We prefer to be on our own, but often lack the skills that we need to be independently successful.”   This week I am on my own with the kids because my wife is visiting her mom on the East Coast, and I encouraged her to go and looked forward to the opportunity to get some solitude (after the kids go to bed).  I imagined all the things I would get done!

Instead I am reminded how difficult it is to stay on schedule without another grownup around (I just get done with the dishes with the last meal—after stretching out the task taking too many Law and Order breaks—and these kids want to eat again!) and I have wasted my “alone” time playing Bioshock.  Another quote: “I, like many ADHD adults, used to hide in front of my computer screen, playing games, not answering my phone for hours on end, and disengaging from the world.”  HAVE YOU BEEN SECRETLY FOLLOWING ME AROUND, KEVIN ROBERTS???  No, that’s first-person-shooter paranoia.  (Have you seen Bioshock, though?  It’s Art-Deco meets The Fountainhead meets Night of the Living Dead.  Three of my favorite things: aesthetics, overconfident philosophers getting their comeuppance, and zombies.)

So I realize that my initial reaction of, eh, too many things going on in this book was actually rooted in jealousy, in that I wanted more of it to be about me.  He offers advice to parents, spouses, and teachers of children and adults with ADHD.   Some of it seems radically simple, but good.  For instance, he has a chapter titled “Do The Opposite” which begins thusly:

Trying to help an ADHDer create lasting change can be a thankless task, if not an exercise in futility. . . . The first mistake most people make is thinking ADHD folks are just like them.  If ADHDers could conform to accepted behavioral standards, armchair wisdom holds, their troubles would be over.  Many of the choices we ADHDers make seem counter to logic and reason . . . . Often, the more [people] try to help the ADHDer, the more they succeed in pushing that person away.

The result of a long conversation I had last week with my wife—rather, a long argument—was a brilliant solution she came up with.  When she wants me to get something done, rather than ask me to do it, and then reminding me later that I agreed to do it, and then getting fed up with my excuses and further promises, she decided instead that she will “hire” me for jobs, just say “can you work for me from one to three on Saturday,” and she will tell me what to do then.  I actually get a lot done when I can focus on something, such as pulling weeds from the side bed.  I need to get started.  When I go outside I see the weeds, and the brush pile that needs to go to recycling, and the old television antenna that needs to come down, and paint that needs to be repaired, and the driveway that needs to be replaced, and the stump that needs to be pulled, and the garage that needs to be cleaned out, and, and, and.  So although I seem to resist being told what to do, I instead resist piling a job on the could-you-get-this-done-soon stack.  Just having time set aside to focus on a task (with another grownup around) is relief.

I’ve also tried the “do the opposite” strategy with my kindergarten son who shows signs of ADHD.   I realized, after reading this chapter, that no matter how hard I try, I cannot make him hurry, unless I physically move him or get him dressed or whatever.  And, he resists changing activities most of the time; every night, he resists going to bath time, even though he loves to have a bath.  So, this opposite strategy means that in order to make him move, I have to make things a game, a joke, silly fun time.  For the attention-typical world, that would be a delaying strategy, but it makes things go faster and smoother with him.

Furthermore, one of his pieces of advice is to create the sort of intensity ADHDers need to get going.  There are many strategies for this, but they are less crazymaking than the usual procrastination/crisis strategies ADHDers seek.  In order to finish this review, for example, I created all sorts of bad mojo in my life, but here I am cranking it out, getting juiced by the creative energy, the sparking assoications (I have a friend named Mojo and he’s a nice guy), feeling energized and a sort of calm even though I felt raving and stuck last night.  He has strategies for creating that creative intensity without all the self-flagellation and constant disappointment.

So, in order not to risk giving away the whole movie in the preview, I’ll stop there. And I’ll go re-read this book.  In fact, even though I got the free copy, I’m buying it for my Kindle, so I can re-read and re-highlight it.  And stop spying on me, Kevin Roberts!

Come now, Mr. Bubbles. Time to go answer your e-mail.