The Lily Pad

By froggy (not a member of the author's guild)

froggy

froggy
Location
Portland, Oregon, USA
Birthday
June 07
Title
She Who Must Be Obeyed
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Yes please! Come on over. We'll have tea.
Bio
Mom, editor, writer, wife, traveler, dog owner, laundry wrangler, and superintendent of homework.

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Salon.com
JANUARY 30, 2010 3:14AM

My Son and ADHD

Rate: 20 Flag

It seems that almost every day, I come across someone, in a blog, in a news report, in an overheard conversation in the grocery store, who thinks that kids on ADHD meds are the embodiment of everything wrong with America. The parents are lazy. The schools are lazy. The teachers are lazy. The kids eat too much sugar. The kids watch too much TV. It's all due to video games. If only the mothers breastfed longer. The parents don't give enough discipline. It's all due to food coloring. Kids spend too much time in daycare. If only the class sizes were smaller. If they'd only give up dairy/gluten/junk food/ingredient-of-the-week, they could just fix this. And, my favorite, it's all a scam from Big Pharma to sell drugs.

My son is 12. My son has ADHD. He was diagnosed at age 6. And yes, he's been taking medications since that time.

(I heard that gasp. I must be one of those parents.)

Come along with me. Walk a mile in my shoes. Welcome to armchair parenting at its best.

We knew all the way back in preschool that he was not like the other kids. This was half-day preschool, and he was home the other half of the day with a parent and his sister, and very little TV. In a room of fifteen three-year-olds, he's the one who can't sit still. He's the one who doesn't know how to make friends. He body-slammed his best friend on the playground because he didn't know it would hurt. We knew he was smart, he had an incredible vocabulary, but couldn't, wouldn't sit still. Ever.

OK. He's only three. Then four. Then five. It starts to hurt, after a while, when we knew that our kid was the weird one, the outlier, the one off the edge of the bell curve. Whatever it was they expected kids of his age to do, in any way academically, he didn't. By contrast, he could talk a blue streak. He remembered everything from documentaries on dinosaurs. He could explain the life cycle of a nudibranch. He could ride a razor scooter, a bike, and a skateboard. But at age five, when kids were expected to start writing on that three-lined paper, fuggeddaboudit. He climbed the walls.

When his public school kindergarten teacher mentioned ADHD in the first week, I panicked. We pulled him out, put him in a private, full-day kindergarten, with fifteen kids and a teacher and an aide... about the best situation we could afford. He floundered. We pursued ADHD testing on our own, with our own physician. Conner's Behavioral Index, if you've never seen it, is a detailed questionnaire for parents, teachers, and caregivers to fill out. He had every indicator in the book.

We agonized. What were we thinking? Medication for a six-year-old? But how long do we wait? Until he's missed all of kindergarten? All of first grade? All of second grade? We went to a parents class that our pediatrics office offered. And there we heard the heartbreaking stories from the parents with kids in 3rd, 4th, and 5th grades, middle school, high school. The kids thought they were stupid. They thought they were losers. Many had repeated grades. They had no friends. They didn't know how to slow down enough to read social cues from other kids. They were miles behind in school. So they acted out. Got sent to the principal's office. Hated everything and everyone. We saw more than one parent cry in that class, telling their stories. One dad said, "It must be like going to work every day for your whole life when your boss and everyone there hates you."

We decided to try. Ritalin, the most common medication, is a lot like caffeine. It's in and out. And it has 40+ years of data about its use. If it didn't work, we'd stop.

The effect, once we got the dosage right, was remarkable. This kid, who'd always had a built-in motor and a mouth that never stopped, went quiet one afternoon. I went up to his room, and there he was on his floor, with an entire city built out of blocks, books, and Matchbox cars. He was so excited to tell me all about it. I watched, stunned, while he explained. "This is a ferry boat over here, mom, and the cars are going across this river. Then they get out, and they go over there..."

He had never, ever had the patience to build anything that detailed before. He was happy in his imaginary world, and productive in his six-year-old way.

But that's not the end. Not by a long shot. The medicines are a moving target. For some kids, they stay on the same medicine for years. Not mine. As he grew, the dosages went up. We tried other meds with no luck at all. His patient and fantastic teachers gritted their teeth through every trial, gave us daily reports of his wall-climbing at school, and cheered with us when we got it right again. We fought the side effects--the sleeplessness, the lack of appetite.

And he made some progress in school. Some. For years, I've been a part-time homeschooler, doing every blessed project at home with him that ought to be done in school (but guess who didn't get it done when all the other kids did). I still do. I rock at "Are You Smarter Than a Fifth Grader" because I live it.

In third grade, after two and a half frustrating years getting extra help from the school resource room, we took him to a private clinic for more testing. In addition to ADHD, he has dyslexia and dysgraphia, and an IQ of 140. He's smart as a whip. But the part of his brain that deals with written symbols is completely miswired.

These are common comorbid disorders with ADHD. Textbook, in fact. So now we have a tutor who comes to our house three days a week, to give him what the public school is too underfunded to. And we did a year of weekly lessons with an occupational therapist to help with handwriting. It helped a little. Not much.

He's 12 now, and in middle school. It's been a hellish year. He went from fifth grade, where he'd finally come into his own with friends and a great teacher, to a new school, new teachers, new friends. To say he doesn't do transitions well would be an understatement. He feels singled out and weird at school, which is the kiss of death socially. He uses a portable keyboard. He goes to the resource room. He has an aide that helps in some classes, and the kids pick on him. "Who's that, your grandma?" they ask. I contact every teacher once a week, and I help him keep track of assignments. I still feel like a homeschooler, now that the expectations of middle school are higher. Every weekend is filled with catch-up work that he didn't get done in class. He has extremely limited video game time, and he earns extra time, in five-minute increments, for all the behaviors we're trying to encourage--writing down assignments, turning them in, keeping track of possessions. I could get my very own CPA in video game scheduling.

We continue to search for the right combination of medications. The pediatrician recently ran out of ideas and referred us to a specialist. We hope things will get better. The medications are sort of effective. Kind of. Certainly better than nothing. But not a magic bullet. They don't fix dyslexia. They don't make the other kids be nice to him.

There's the ADHD secret handshake that other parents have--when we start swapping war stories, doctor's names, things we've tried. I have never, ever, in six years of this, met anyone who gave their kid medication lightly.

We've gone to behavior therapy, for him and the whole family. It helps. A little. He does all kinds of sports. He gets lots of exercise.  We don't eat a diet loaded with crap. There are none of the landmines in our family that tend to cause behavior problems in kids--divorce, moves, deaths, etc. We're happily married, we're in the same house we've been in since he was born.

When I read about the diet-of-the-week cure for ADHD, I want to know where the outcomes research is. "My kid got better" is not data. Several hundred kids with a control group and a double-blind study is data, and there's very little data to show that diet has a thing to do with it. I wish it did. If it did, then medical clinics would be having ADHD diet classes, just like they have diabetes cooking classes, or classes for people with celiac disease, or weight loss classes. Show me the Mayo Clinic ADHD Diet class, and I'll be all over it.

If my son needed glasses, insulin, allergy shots, crutches, or orthopedic shoes, of course I'd do it. I'd never question it. But psychiatric medications? For a child? There must be something wrong with those parents.

The truth is, my husband and I are busting our butts for our son. He's working harder and longer than any other sixth grader I know. And yes, he takes ADHD medications.

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Comments

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He has gifts. It is unfortunate he has to fit into the box of normalcy.
Thank you. I'm getting a bit tired of people telling me I have a condition that doesn't exist.
Great post!!!

Hopefully it will reach the right people, the ones in the same boat, and they too can get the help they need, both the parents and the children.

Rated.
Drew--I agree. He has gifts. Amazing gifts. He can build the Taj Mahal out of LEGOs, but that doesn't count for much in school. The box we all have to fit into to realize those gifts, school, is hellish for him. He wants so badly to fit. Sometimes I wonder if those parents with the super-smart honors kids, whose brains just fit into school, really appreciate what they have.

Norwonk-- I know. It exists. The world would like to tell you it's a personality flaw that can be fixed with hard work, bootstrap style.

Tinkertink--thanks! I also hope I can find some fellow travelers in this boat.
It exists. Our son has battled it, and we with him. He's 16 now, and much more able to control his behaviors, as far as we can tell (he's 16, and doesn't want to talk about it, most of the time . . . so, as far as we can tell.). I do so wish there were a way to quit making kids fit in boxes . . .

Hang in there froggy. As to the doubters and judgement-slingers - fuck 'em.
Thanks Owl. I appreciate it. We're looking now at a frightfully expensive private high school specifically for kids with ADHD, dyslexia, and related disorders. I have no idea how we'll pay for it. Sell the dog, maybe. But I would do anything to help him realize his gifts and live up to his potential.

(and yes. The judgment slingers can eff off.)
You are parents who want the best for their child. And it is paying off. It continues to amaze me how callous others can be, and how judgmental--as is we'd 'do anything just to keep that kid quiet!' (yeah, because doctor visits and clinic appointments and watching my kid feel weird and different is easy, yeah) I'm on your side here and I know how much work it takes to get a kid thru...He's one of the lucky ones.
Thanks for this. Prayers for your struggles.
Your story gives an amazing and yet painful account of what it looks like to parent a child with ADHD. Why do people think that medication is the last resort or the easy way out?
I wish you and your son the best.
r
mypsyche--thanks for understanding. I appreciate it very much.

Trig-- thanks.

Joan H.--I think that's what irritates me the most, people assuming that this was the first thing, or the only thing, that we do for our child. I wish it was that easy. It's not.
You have done an excellent job of detailing this journey. You are clearly a mom who loves, and knows her son. Congratulations.
nextplease--thanks for understanding. It means a lot.
I'm really glad to hear this side of ADHD, Froggy. Not that you or your son are having to deal with these issues. But, it's always nice to change my automatic impulse of thinking that parents or teachers or shrinks just put kids with difficulties on meds. It's unfortunate, but it sounds like you are on the right track and luckily for your son, you have been from the start. He's a lucky kid.
I have ADD and I'm in my late 30's. I take 40 of Adderall twice daily. Not pretty, but I'm finally able to live a "normal" and satisfying life.
Thank you for this explanation. I admit, I've been one of those parents who thinks kids with "ADHD" wouldn't have that diagnosis if they were working on the family farm 12 hours a day. But you've shown me the other side and it gives me thought. My son's best friend has been on drugs for years, that's the choice his parents made. Rated.
Bravo to you, your husband and your son. I work with children and youth and have seen the results of medications that work. Sadly, as you have stated, their effectiveness is often temporary. Thank you for your honest sharing. My best to you and your family.
As a teacher of middle school gifted kids for 21 years, including many students who had the same issues your son struggles with, you are a dream parent. There are good ways to engage these kids and let them shine - experiential learning, hands-on projects, teaching kids about group dynamics and leadership skills, etc. And they are the most fun for teachers and the rest of the kids too.
Julie Tarp--thanks so much for your honesty. I know there are a lot of people who are well meaning but have erroneous ideas about this disorder. Thank you so much for being willing to listen.

nightlyscribe--thanks for finding a way to control it as an adult. It's hard for kids and adults to manage the meds and find something that works.

Deborah--also thanks for being willing to listen and perhaps change your views. I appreciate it more than you know.

Lady Dove--thanks for understanding! Yes, the medicines don't always work, and they don't stay working.

Susan--Thank you for what you do! Can I get my son into your class?
Yup, yup, yup, to all of it. For those who manage their kids' ADHD or autism with gluten-free diets, more power to them. I think kids who benefit from that are the one-in-a-million. I can't STAND the judgment about giving kids meds. What is one to do with a child who simply isn't functioning in home or school? Let them flame out? As for stimulants -- they are one of the safest meds around.
Thanks so much, pauline and neilpaul. My son is doing a little better than when I wrote this post. A few changes--mostly settling into the hormonal stew that is middle school. We were able to get our (wonderful) dyslexia tutor to meet with him during the school day, so instead of a wasted hour in study hall he has tutoring... and more time after school to hang out and be a kid.

I wrote this after seeing one too many comments about how ADHD isn't real, and parents who use meds for their kids must be lazy and incompetent. I get very tired of that, and some days enough is enough.

Fencing has helped a lot too. Something he really likes, that involves moving and uses his quick reactions.

Anyway, thanks for reading! I appreciate it.
What an ordeal. But good for you and him for persevering.