After two weeks on the new medication, Dylan is showing signs that he isn’t capable of focusing on anything. He claims that he is paying attention but, as his algebra teacher pointed out, he is staring into space. When I ask him to do things, I ask and ask and ASK and ASK – and sometimes they still don’t get done.
It reminds me so much of Dylan in 4th grade. He was in the GT (gifted/talented) class, and was certainly capable of the high-level thinking in the class. His homework took four hours, though, and he was failing math by the third week of school. His work was coming home unfinished, yet he enjoyed the GT approach tremendously.
So I went into class to see what Dylan was doing. In a way, the entire class reminded me of Dylan. They were practically jumping out of their seats with answers to virtually any question. They all had their hands up, and wanted so badly to share what they knew.
The first day I observed, the class was in high gear – except for Dylan. He vascillated between being eager to answer – about 1/5 of the time – and staring blankly – or possibly intently – at the class pet, a blue Betta fish.
He just stared and stared at that fish. I couldn’t even imagine what he was thinking. The fish mesmerized him, as if nothing else were happening in the room. The other kids were jumping up and down in their seats, waving their hands, offering opinions. And Dylan was staring at a fish. The fish was barely moving, just its fins twitching. Betta fish are not known for their flamboyant behavior.
I watched him watch that fish for half an hour.
Later, the teacher assured me that he did, occasionally, stop watching the fish long enough to answer a question or do some paperwork. But mostly, he stared at that fish. When he came home, he asked if he could have a fish. He begged for a fish for four months. Eventually, he got one.
Meanwhile, I went back into his classroom to help with a science experiment. The class was excitedly measuring and recording and measuring and recording. They were pretty loud, so the teacher had installed a sound-activated stoplight in the room. When the light changed from green to yellow, the class was supposed to get quiet. If it got to red, that meant real trouble.
Mostly the light was on green. The class worked hard on the experiment. Everyone was talking, agreeing and disagreeing and trying to become a team. Everyone was writing down everything.
Dylan’s paper was blank. He was watching the stoplight.
He would stare at it until – FINALLY! – the light would change to yellow, and he would thrust up two fingers into the air – the school peace sign which meant be quiet. His fingers were in the air before anyone else in the class – because he wasn’t doing anything except watching the stoplight.
He was quite proud of himself, knowing when he had to be quieter. Kids would hush a bit, then the light would go back to being green. And Dylan would watch it again – doing nothing else – until it changed back to yellow. His eyes wide, he would thrust up that peace sign and start saying to his classmates, “be quiet! shhhh!”
This week, he’s acting like that again. He’s not doing anything he says he’ll do. The teachers have to remind him that he’s in class. He thinks he’s paying attention but he’s simply not there. So the new medication isn’t maybe doing all that well.
I called the doctor and she assured me that we couldn’t tell anything until a full month has passed.
Perhaps, while we wait, I could send him to school with a fish.
This morning, Dylan’s algebra grades included two A’s, a Z (missing homework), and an E (failed test). This averages out to a hefty D in the class.
Not bad for one week into the new quarter – and quite typical for a GT/LD kid.
So, since their school allows retakes, I asked him to retake the test after school.
“I can’t retake a summative!” Dylan wailed. “She told me that last time!”
There are summatives and formatives. Both mean TEST but I have no idea of the difference. So I printed out his grades and wrote a note to his teacher: “Please allow Dylan to retake the summative so that we know if he understands the material,” it said. “It doesn’t matter if it changes his grade.”
I handed him the paper. God only knows where he put it. He is supposed to meet with her after school. I sent her an email, so she can expect him. And also so she can tell me if he doesn’t show up. The last three times he was supposed to retake a test, he didn’t show up.
“I forgot,” he said.
Yesterday was a half-day of school. At lunchtime, he was supposed to retake his chorus test (which he missed last week because we went out of town). We talked about it, discussed the timing in great detail. In the afternoon, I asked him how it went.
“Oh, I didn’t take it today,” he said. “It was a half-day.”
“I know it was a half-day,” I said. “But the teacher was expecting you at lunchtime.”
“Well I didn’t think I could take a test if it was a half-day,” he countered.
There was some yelling. I am not doing well with not yelling.
I went on and on about how Dylan didn’t show up last week for the basketball team meeting, even though he’s wanted to try out for basketball since he was 10. Try-outs were finally coming, and he missed the meeting because he didn’t know it was happening. This, after two weeks of coaching from me, and a reminder for several days beforehand – and the day of the meeting. The meeting also allowed some time to play basketball, so I got Dylan some new gym clothes, so he would stand out in try-outs. We talked about that, too.
“Oh,” he said when I didn’t see him coming out of the gym, “I thought it was next week.”
So when he also didn’t retake the chorus test at lunchtime, I completely lost it.
I called my husband, who has a touch of the ADHD himself.
“I can walk into the kitchen for a glass of water,” said Bill, “and end up fixing the car. I’m not sure this is the time to bring down the hammer on Dylan.”
He was right, of course. I knew I married him for some reason. He adds balance to my insanity.
So we have decided that notes in the lunchbox will be very helpful. “GO TO CHORUS,” says today’s note. And then after school, he is supposed to go to algebra.
We’ll see what he actually does.
We went away for the weekend – and got stuck. On our way home, something weird happened to the car and it stopped working. It’s a fairly new (2012) minivan, and the problem turned out to be minor, but it happened on a Sunday in Middle-of-Nowhere, Pennsylvania – so we ended up stranded for the night (in a cushy hotel with a pool).
The original plan was to stop at some caverns and enjoy a quick visit at the halfway point of our 8-hour trip. But a few miles from the caverns, on a curvy mountain road, the car just lost power. We crawled to the caverns, called for help, and ended up skipping the cave tour altogether in favor of crawling 20 miles to the nearest car fix-it place. Being late in the day on Sunday, they couldn’t even look at it until Monday, so we crawled to a nearby hotel (with a little help from Yelp) and hunkered down for the night. My parents were traveling with us, and were immensely helpful in the entire Save-the-Car process.
The caverns were supposed to be the highlight of our trip. Instead, the boys played in the fitness center. They went swimming (twice, with some inventive suits). We had pizza delivered, and they watched TV for two hours (NOT allowed at home) before finally going to bed … and missing school the next day.
At breakfast, Shane drew on the table with his finger. “This is how good it can be,” he said, drawing a line up above his plate, “and this is how bad it can be.” He drew another line well below his plate.
“And this is how our trip has been,” he said – making sharp roller-coaster-like marks on the table, showing that the trip had fluctuated from very high to very low and back again – several times. He explained that missing the caves was very sad, but having fun in the hotel was unexpectedly good.
I wanted to tell him: Yes, Son, this is LIFE! Life is always exactly like this. There are highs and lows. Things are good and bad. One minute you’re up, high as a kite, and next minute you’ve plummeted to the ground – but you always get back up again.
The line he drew reminded me of a heartbeat monitor, keeping track of a beating heart on a machine in a hospital somewhere. It’s a scary thing watching that line. When it goes up, you know everything’s going to be okay. When it goes back down, you just pray that it goes back up again. The dreaded flatline means there is no more hope.
Same as life. Without the ups and downs, there’d be only the dreaded flatline.
I wanted to tell him this, to prepare him that a car emergency and a swimming pool are only the tips of the iceberg for what will follow in his lifetime: the rest of fourth grade, middle school, high school, college, work, family, kids, grandkids – LIFE.
Instead, I laughed and said, “Yep.” That’s just how this Trip has been.
Dylan is back. After one week on the medication, we don’t know much about its effects on his school work, but it’s like having the “old” Dylan back again.
He’s kind and fun and funny. He’s sweet and caring and wild. He’s cool and brilliant and wonderful. And for so many months, I thought the teenager was taking over. The PILLS were taking over!
Dylan has always been a happy, enthusiastic boy. He smiled – quite literally – when he was 3 weeks old, and he never stopped smiling. A few months ago – maybe even a year ago – I realized he had stopped. He wouldn’t smile for pictures. I assumed it was his self-consciousness taking over. Along with his late brain development, he’s also late in getting his adult teeth – so braces aren’t a possibility yet. I thought he was trying to hide his teeth.
I almost hope he doesn’t read this blog, because I don’t want him to go back to not smiling. But in the past week, since taking him off stimulants, he’s been happier than ever. Yesterday I yelled at him (yeah, I did) and instead of it turning into a knock-down, drag-out, hours-long battle to the death, I said my piece and shut up. He said his piece and shut up. It was awesome. I mean, the yelling wasn’t awesome. But a small thing was just that – a small thing.
So tomorrow we up the dosage of the new medication to see if he can stay awake through it. I sure hope he can. We’re going away for the weekend and I’m thrilled to be taking “old” Dylan along – the one I remember from birth and toddlerhood. The one who isn’t agonizing over life.
Thank you, GOD, for helping me to realize that the pills were the problem. If I’d left him on them for much longer, I can only imagine what would have happened.
School conferences are always an eye-opener. There are those things I think about my kids, and how they are at school. And then there are those things that are true.
At 4 a.m., I woke up and went downstairs to send a letter to the principal. “It’s November,” I said, reminding him that I’d called last May to get a meeting set up for Shane. The issues aren’t as pressing as Dylan’s but still, he has dysgraphia, and he needs serious help with his handwriting and spelling issues. I didn’t want to forget him for even one moment longer. The school counselor called less than 8 hours later to set up the meeting.
Then I went to talk to his teachers for our annual conference.
First, I met with Shane’s math teacher. Shane is getting ES’s in math – the equivalent of A+++’s – and he’s in the advanced class. He’s not only answering the challenge questions correctly, he’s also asking for more challenging questions. He’s asking for help when he needs it – self-advocating like a pro – and his teacher sees him as a hard worker with a great deal of competence in the subject.
In other words, Shane is doing great in math. I asked if she had any trouble reading his writing and – as I could see quite clearly – she had none. Neither did I. His math problems were figured out rather neatly, actually.
So I went to meet with Shane’s other teacher – who teaches him reading, writing, science and social studies. I explained to her that I was worried about Shane’s writing and spelling. She showed me samples of his work and I asked several times, astounded, “Can you really read this?”
“Yes,” she said, laughing. “I can.”
I asked about his spelling and she showed me a spelling dictionary, which maybe Shane can use. She assured me that his spelling is not a big problem – and she said it in a way that made me believe it. I’m not nearly as worried about his handwriting or his spelling as I was at 4 a.m.
She said he’s getting an ES in vocabulary – again, a grade that requires exceptional work. She showed me samples of his writing and his wonderful word choices and the creative ways he structured his sentences. She sent me home with a stack of papers that are so fun to read, I’m practically giddy with anticipation.
The teacher said he took a big test to measure his reading ability. Fourth graders should have a 201 to be proficient. Shane scored a 220. He’s reading at a sixth grade level. His lexile reading level is over 1,000 – which is awesome. It’s particularly awesome because Shane loves numbers, and takes his lexile progression very seriously.
As a matter of fact, no one said anything bad about Shane. All of my worries appear to have been for naught.
Of course, I didn’t ask about his social life. But he seems perfectly content with his handful of close friends, even if he only spends time with them one at a time.
So when I picked up Shane after the conferences, he wanted to tell me about his school day – most notably, P.E., where he was tested in some kind of running/endurance test. While many kids in his class ran 13 or 18 times across the gym, Shane ran 31. So he’s not only brilliant, but also athletic – and apparently has some speed and endurance, too.
Of course, I knew this. Deep down, I knew it all along.
I’m only a parent so I can beg constantly for reassurance.
Dylan went to school this morning on a new medication which, as far as I can tell, doesn’t alter his appetite, sleep cycle or (best of all) personality.
On weekends, we are accustomed to him being himself because he didn’t take pills on weekends. But this new medication has to stay in his bloodstream to work. It’s actually designed to help high blood pressure – but is also supposed to help him focus. He takes it every night. So this blessedly long weekend (three days) gave us a chance to see the new med’s in action.
It didn’t do anything.
The first time he took a stimulant, back in fourth grade, the effects were instant. The pill gave him memory recall that he’d never had before – and it happened within 20 minutes. He went to the bathroom at the nurse’s office and came out having memorized a 12-digit number.
He’d never memorized anything before, except how to spell his name and the alphabet, which we taught him via song. He can memorize anything if it’s by song. Too bad the teachers don’t sing.
We also sent him off today with a new routine, which he detests. He will be staying after school four days a week, in the media center or a teacher’s classroom, so that he can keep up with his work, his homework, and getting things turned in on time. There’s also an algebra teacher who helps kids with algebra – and has offered that assistance to the whole school.
Last night, I had a dream that Dylan met with the algebra teacher after school and learned all he needed to know about algebra. He had so much fun with the new teacher, he went back every day.
This is the kind of dream I have.
Then I woke up at 5 a.m., unable to get back to sleep thinking about the new routine and hoping it will help. So I’ve been up since 5:00 hoping we’re doing the right thing. Change is so hard.
This is the kind of life I have.
Halloween at our house meant a trip to the neurologist. Ever since I realized that Dylan’s pills were causing much of his angst (and mine), I’ve been desperate to get him to the doctor and do something. So we went.
Of course, like any good parent who thinks she knows more than the doctor, I got out a library book called Straight Talk About Psychiatric Medications for Kids. I studied it until the morning of the appointment, making mental notes about the best medications for ADHD. I had two suggestions for the doctor based on what I read – although we have a doctor with whom I feel infinitely comfortable. She not only knows her stuff, I trust that she takes seriously the care of my son. I think she cares about him, which is really what matters.
When medicating him for the first time, we met plenty of the other kind of doctor. But that’s another story.
So I went in armed with my book. We talked about Dylan’s issues and after taking copious notes, she gave us two suggestions: my first choice (based on my book) was one that was once used to combat high blood pressure. So far, all I know is that it might make him sleepy and occasionally dizzy. It should not (thank God) change his appetite. Tonight, my job will be to read that chapter in the book. It’s also used to treat tics and other disorders.
Meanwhile, Dylan took his first pill late last night, after trick-or-treating. Then he slept until 10:10 in the morning – the longest he’s slept since the day he was sick last year. So far, as a result, we know nothing because he went to bed so late, I can’t tell if he’s extra sleepy or not.
His behavior today has been spectacular. He’s like his old self. He’s insane, as always, and totally bouncy – but he’s kept himself busy with projects and such all day long. He’s doing great.
I just hope it lasts.
Shane had an all-day field trip to the Chesapeake Bay, and I chaperoned. He’s been talking for a week about sitting with Andrew on the bus, but when we arrived, I could tell that Andrew wasn’t an option as a seat partner. Shane hung back, way at the end of the line – mainly because I was so late in getting him there, but also because that’s how he is. He would never just walk up and stand next to his friend. Shane is a rules follower. He goes to the end of the line.
The ride was 2 hours long. When we arrived, I asked Shane, “How was the bus ride?”
“Good,” he said.
“Did you read Harry Potter?” I asked.
“Yeah,” he said. “I didn’t sit with anybody.”
“You got the whole seat to yourself?” I asked. “That’s good.”
“I didn’t want that,” he said. Tears sprang to his eyes. He immediately choked them down and stopped talking about it.
He’d spent two hours wishing he had someone to sit with – and no one sat with him. He’s a sweet, lovable kid – but he would never sit near someone and talk across the aisle. He wouldn’t sit on his knees and talk to the people in the seat behind him. He’s an introvert and a loner. We know this.
So when I watched him at the field trip, it was no surprise. There were four boys in our group, none of them his intellectual equal. One of them was in my math group last year, when I volunteered to help teach third grade math. I was teaching him to count by 2’s and 3’s – a skill Shane mastered when he was in preschool.
Still, I tried to get them together, because they were partners for some activities. They did their activities together, and then the boy ran to be with his friends. Shane walked by himself, sometimes with me, sometimes spinning in circles as he went. He had not a care in the world – but I was crushed. Why didn’t he talk to anyone? If he wanted someone to be with him, why didn’t he get out of his comfort zone a bit and talk to someone?
After more than an hour, Celeste – a girl he’s known since 2nd grade – started talking to him. They talked and talked and talked. They compared shell collections and discussed their field trip activities. They were in synch, in tune, able to communicate. They ate lunch together and alone, still talking, while the other kids bunched together in their groups at tables of six or eight.
Celeste is smart, sweet and fun. Shane has been begging me for a playdate with her for two months. And I told him to find a boy instead.
This is why I chaperone. Sure, I like to go places and see the things they do. But mostly, I get to see my child in action, in his social group, with his peers. I learn more about him in one day than I can learn in a whole week of asking questions about his day.
Today, I will email Celeste’s mom with one of the many pictures I took, and invite her over for a playdate. And I’ll wonder all day long why I couldn’t just listen to my son.
The kids had a three-day weekend, meaning no medication for Dylan. Since I am now convinced that the medication is the root of all evil, I paid close attention to Dylan’s behavior.
First, and best, there was not even a minor incident with his becoming irritable, crabby, despondent, despairing, morose or even sad. He was happy all the time – just like he was when he was a toddler. He smiled constantly. He wanted to do everything. He didn’t have even a moment of depression. And this was over the course of THREE DAYS.
Second, he was bouncy. I mean, he was everywhere. He is BIG – taller than me already, with enormous feet – but he was climbing on things, hanging on people and touching, Touching, TOUCHING everything he could see! It drove me crazy. It always drives me crazy. Again, this is how he has been since he was a toddler.
Third, he couldn’t keep his hands off of Shane. Because Shane is smaller, Dylan has no trouble forcing Shane into submission for whatever he wants to do. He grabs Shane by the shoulders, pushes him into things, head butts him and tackles him. He constantly HUGS Shane – although they are not comfortable hugs. So this weekend, I took it upon myself to stop yelling at Dylan about his brother, and I started hugging Dylan instead.
This worked BEAUTIFULLY. He stayed off of his brother (more), and he was able to get that physical stimulation. AND I was able to hug my son! Woo-hoo! He may be almost a teenager, but he’s not gone yet. Double bonus.
Meanwhile, I emailed some of my lists about possible medication changes. Apparently this is not an uncommon problem. Parents who have lived through this say that medication works differently as the hormones start raging through our kids’ bodies. So we are going to either have to find a new medication or – as some moms did – take away medication completely.
This morning, I gave Dylan the choice – at least until our appointment with the neurologist next week. He opted to take the pills. He also told me I shouldn’t start arguments with him. This is so laughable, I can’t even go into the details – but Dylan debates every single word that comes out of my mouth (especially when he’s taking those pills).
So we’ll just hang in there and see how it goes…!
I’m no stranger to drugs. I know things. I know people. I was aware, when I put my son on stimulants, that there could be side effects.
But it never occurred to me that those side effects would include depression. My son, the enthusiastic, fun-loving optimist, is depressed. He hates his life. He feels unloved and unliked and unappreciated.
For weeks now – maybe months – I’ve believed that this was just a symptom of being a teenager. His hormones are raging, I thought. There’s nothing I can do. We’ve had some pretty rough days, evenings, nights. He’s spent time crying when I wouldn’t have expected him to cry. The things he said were so morose, so incredibly sad.
And I could relate to those things. I felt awful for most of my life. I recognized the feelings as similar to mine. But I forgot that, for most of that time, I was severely depressed. I hated myself, my life, my unapparent reason for existing. So when these words came out of my son’s mouth – followed immediately by the comment that he would never, ever commit suicide though – I just figured he’d have to get through it, like I did.
Then tonight, after dinner – after yesterday’s drawn out, emotionally draining, six-hour moan, whine, sob session… Tonight we noticed that he was 100% normal and happy. Unlike many, many days when he comes home from school, tonight he was happy.
He had a field trip today. He doesn’t take medication when he goes on field trips, because he doesn’t need it to focus on the teacher.
And for the first time – in all these months, in all this time, even with all the warnings – the things he would say about not feeling like himself … Tonight, for the first time, I realized that my enthusiastic, optimistic son is having a reaction to the drugs.
OF COURSE he is having a reaction to the drugs! They are stimulants, which eventually cause a crash. And the longer one takes the stimulants, the harder that crash can be. He is having a reaction to the drugs.
I can’t believe I didn’t see it before. He’s been on the same drug – in an increasing dosage – for two years and two months. He doesn’t take it on weekends, or in the summer. And we’ve never, ever had a knock-down, drag-out horror session like the one we had last night unless he was taking medication. We haven’t had one because without the drugs, he feels fine.
Later, I’ll rehash everything we tried – for years and years and years – before we tried medicine. I’ll tell the story of the miracle drug that changed his life.
But for now, we have to get off this drug. I am calling the neurologist in the morning to see if we can get an appointment and discuss our options. Maybe we can try a new drug. Maybe it will be better. Maybe we can try the Feingold Diet (the only natural cure we haven’t tried yet). Maybe we will just send him to school with his under-focusing brain and let him be himself – and miserable with school, instead of inside himself.
Funny thing is, we decided to medicate him the day we learned that unmedicated kids with ADHD are 80% more likely to become addicted to drugs as teenagers – while trying to medicate themselves. At least, that’s the statistic we heard.
What if we work on his self-esteem, stay vigilant about positive reinforcements, and pump him up instead of making him feel like he needs drugs to keep up? What if we let him try 7th grade his way?
And why am I so afraid for him to fail, as long as he is happy, healthy and brilliant? Einstein was one of school’s biggest failures ever. Maybe Dylan – honestly – is okay being like Albert Einstein. And why on earth am I concerned about that?
