Shut it down

Two weeks ago Jed and I took Cole to his pediatrician, at his kindergarten teacher’s suggestion after a particularly painful conference in which she asserted that his focus (or lack thereof) was well outside the realm of “normal.” Armed with two evaluations – one from his teacher and one from me – we went to talk about the possibility that the Kaiser has ADHD. His teacher’s evaluation matched mine nearly exactly. Our doctor talked to Cole for about five minutes, looked over the evals and suggested medicating. She was ready to write a prescription, right then and there. It shocked me, but I’m learning that’s the norm.

Jed refused. As I look back on the meeting, I think that there’s a strong possibility that I would have agreed to the medication. I want Cole to do well. I want him to feel happy and confident and I want him to love learning. I want him to be successful, and I think I’m willing to do just about anything to give him all the opportunities he should have to get wherever he wants to go. I hate that he has trouble with reading. I hate that he’s suggested, sadly, that the only way for him to stop talking is to “tape his mouth shut.” I hate that he feels different.

But Jed nixed it. He said he wanted a second opinion. He said it nicely, but he shot her down and left no room for doubt. For that, his willingness to say, “Hell no, but thanks anyway,” I’m incredibly thankful.

We were referred to a behavioural specialist with Greenville Hospital System. We’ve decided not to take that referral – at least not now. I’ve started some research on ADHD, and the amount of information out there is daunting. We’re taking steps to treat this without medication (and really, I hesitate to say “treat,” because I’m not really buying into this as a medical disorder that needs “treatment”) by changing Cole’s diet and working on a pretty stringent day-to-day structure. So far, so good. He continues to come home from school with less than perfect marks, but man – it’s ok.

Can he be a distraction to other children? Yes, and if our children are ever in class together, this is me pre-emptively apologizing. Do I think we should prescribe a stimulant to our child so that he’s easier for the teacher and less distracting for the others? Sorry, kids, it ain’t that bad.

I know his brain works differently. I do see that he has a difficult time focusing. I don’t, however, think that any of his… quirks are necessarily a bad thing. I see a really cool child who is obsessively excited about experiments and trains and weather. I see a mind constantly working on math and reasoning and logic. I see a kid who asks questions, who doubts, who pushes authoritarian bounds beyond what’s comfortable for most adults. As my mother wrote to me after I told her of this ongoing drama:

I’m sure you’re aware that there is much to value – it’s just that the world (and particularly the education system) doesn’t necessarily value “different.” But it’s not just different. In so many ways, it’s “better” from my perspective. I know through reading, consulting, and more experientially that these are the kids we all wish we had. They are creative and bright, think outside the box, and look at the world in a different way that appeals to me so much. 

I appreciated that. I needed to hear it. And if we’re being completely honest, let me say this: the symptoms that characterize ADHD seem to me to describe half of the population. And that… that seems like really good marketing. How do we explain the high incidence of this brain-chemical disease in the U.S. but not elsewhere? I asked the doctor about that, and I asked her about this disorder being unknown/non-existent a generation ago. She explained that in past, those ADHD kids were just labelled “bad,” or “troublemakers.” I don’t buy it. And she had no answer for the booming rate of diagnosis in this country. No answer.

And that’s where we are. Jed and I are working closely together to ensure his schedule is the same at both our houses. We’re looking at private schools to determine whether the kid might thrive better outside the public-school mire. We’re cutting dyes and high fructose corn syrup and preservatives. We’re working at it. But we’re not going to take a perfectly normal child, put a label on him, and turn him into a patient.

If you have experience with this, I’d love to hear it. Disagree with my perhaps overly paranoid assessment of big pharma and the ADHD explosion? Hit me.

Calvin and Hobbes

I can dig it.

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14 Comments

Filed under Mindful parenting

14 responses to “Shut it down

  1. Annette

    Sara-
    I work with a pediatric and adolescent medicine center who also has a sub -specialty in treating ADD and ADHD. I say that first because I want to say kudos to you and Jed! I believe that parents want a quick fix for kids school issues when most are just needing structure. Are their kids who really need pharmaceutical therapy? Absolutely, but those are ones who are off the charts. Continue to research non-pharmaceutical therapy. Reach out to other parents. Focus on your son and give him the dedicated structure you describe. If after you have done your best and he still struggles, then you can re-evaluate. If you eventually do have to see medications, you then know you have done all that you could before seeking that therapy. This is my opinion only, of course.

  2. Hoo boy. Does this take me back some. First and foremost, let me say this – whatever you decide to do for your kid is YOUR business, no one else’s. You have to do what is right for YOUR family. What worked for me and mine might not work for yours and vice versa. IOW, there is no right or wrong here.

    Our oldest has ADD. We actually went through a pretty thorough screening process with a neurologist and pediatric psychiatrist, in addition to evaluations from school and home.

    I chose medication, and I’ll be honest about why – while I completely and totally admire the parents who scour their homes for cleaning products that might aggravate the condition, who read labels to make sure their kid isn’t getting any trigger foods, etc, I am not that parent.

    I am not going to pretend that I’m going to make a job of making sure there isn’t anything in the house that might exacerbate ADD, at least not when there’s medication available. I chose medication because I felt like that was what was most doable for our family.

    We found it to be a Godsend. Matthew was able to focus better both at school and home, and I didn’t see any personality changes. (I was concerned that he’d be a medicated little zombie, so I was super paranoid for the first six months or so.) He was still Matty – he was just Matty who could do homework or read a book.

    We’ve always given him the option of taking the meds or not taking the meds. It’s HIS body. If he doesn’t like or want it, that should be his choice. Until he started his junior year, he wanted the meds. His junior year, he decided to give school a shot without meds.

    Because of my own untreated ADD, I’ve been able to help him find coping mechanisms, and so far, so good. (He’s about to graduate in May.) My only regret is that I didn’t treat Matt’s ADD sooner than I did. He missed some fundamentals in math that we just can’t seem to get into his head.

    So, I guess my advice is – whatever you decide to do, do it quickly. The sooner the little dude learns how to cope with the requirements of school, the less chance there is that he’ll miss something crucial and have to work that much harder later, KWIM?

  3. Tina

    The first time someone suggested that Daniel might have Adhd was when he was in Preschool. He was 3! So he kept getting up from the table at lunch time…like I said, he was 3! It was ridiculous to me that a teacher would suggest that at his age. I worked with toddlers for a long time, they could all be put in the Adhd category at some point. Fast forward to Elementary School. He had a very hard time focusing, remaining quiet, staying seated and paying attention. We knew he was smart, but his grades weren’t great. I kept close tabs on him in school, and had daily contact with his teachers. At home, getting him to do the smallest task was hard

  4. Tina

    Ugh….sorry. Typing from my phone is a pain. Anyway…even brushing his teeth took 10 minutes, he was constantly distracted. Now, I do think that schools are a little extreme in their expectations of boys, how can they be expected to sit down and stay quiet for so many hours with just a 20 minute recess? That really pisses me off, but that is the way the world works. We looked into Montessori school, but couldn’t afford it. I did not want to put him on medication, but like Steph, I was overwhelmed by all of the dietary changes that were suggested. We finally consulted his pediatrician and went through a pretty through

  5. Karen

    Of course you know how many times we have discussed this. I love this blog and your whole outlook on the situation. I have compiled all of Hayden’s history, evaluations, and daycare/school assessments and sent the pack to GHS behav/dev program. Although his dr didn’t reccomend drugs, he did give referral. With the genourous help of his teacher, we have set forth the changes at school and in all aspects of his life. It breaks my heart knowing that he sits in a separate chair from the other children on the carpet -and that he carries a clipboard with him all day jotting smileys and X’s per his behavior for each lesson… BUT Even with the (what we call “extra special” changes, he is proud of himself for every smile he earns and has learned to respect and a little more awareness of his emotions. We have a long way to go and I will go through with the GHS evaluation, but I applaud your homeopathic plan to let cole thrive as we know he most absolutely will. I love you and I believe CT will truly play a significantly positive role to others and himself throughout his future.

  6. Tina

    So sorry. Anyway, we went through a pretty thorough questionnaire, as did his teachers. He hit nearly all the marks for Adhd and we decided to give meds a try. The first one did nothing. The second one-bam!-the first day, there was a huge change in his behavior. Too huge. I gave it a month or so, during which his grades improved dramatically and his teaches were thrilled with the change in his behavior, but my exuberant child was gone. I couldn’t take it. On top of that, I could tell when the meds wore off, around 4pm. He would be very irritable and emotional. So, we tried med number 3. It worked great, no zombie, no emotional let-down, grades and behavior were good, but he began to have VERY vivid nightmares. And then it just quit working. So then we took him to a specialist, and he prescribed the only non-stimulant med on the market, Strattera. It really helped a lot at first. His grades were better and it did not change his personality at all. No afternoon let-down, no nightmares, no zombie child. He became more organized and fell in love with reading, something he could not focus on for long periods before. That being said, the longer he is on it, the less of a difference it seems to make. He is back to sitting in the front of the class so he does not distract other kids. His grades are starting to go up and down again, and I am getting more notes from his teacher. This is the last medication we are willing to try, and he is maxed out on the dosage. So now we are taking the plunge into the dietary changes, and not just making him do it, we are all doing it. I don’t regret trying the medication, because at the time it seemed like the only realistic and doable option for us, but I wish we had tried the diet changes first.

    • That was our experience with Strattera, too! We’d had him on Concerta for years and years (it was great for us), but you know what a freaking HASSLE it is with those scrips. You can only get three scrips at a go before you have to do yet another office visit, you can only fill one scrip every 30 days, etc. So we went with Strattera. Initially, it was okay, but then? Ugh. Side effects out the wazoo. The switch to Strattera was what prompted Matt to try life without meds. (By the way, the dietary changes get a LOT easier as they get older and are more able to have input about how to implement the changes.)

      • Tina

        Isn’t it crazy how the medication can effect people so differently? And yes, getting the meds was a pain, and expensive. I am so glad that your son is doing great without the meds. I am really looking forward to the diet changes to see if it helps him.

  7. Dan

    I have no kids (that I know of) so no experience to share. However, I was a kid who a generation or so ago would likely have been tagged with the disorder. According to my elementary school report cards, I “did not excersize self control”, “likes to visit too much with his neighbors”, etc. I wasn’t a “trouble maker”, but I was the class clown which I imagine is just a different path. As a teen, I was in trouble, not huge….but could have easily gotten worse. The answer was two loving caring parents. Do I think they did everything right? How the hell should I know. What I do know is they never quit being my parents (My father to this day thinks he should still be raising me…not kidding, actual conversation….I’m 49). As an adult I have a life that I worked hard for, but was able to get here because my parents created the good base. I share this only to say whether you choose to medicate or not, I believe you’ve already accomplished the most important part….involvement. You and Jed are in the game. You’re loveling involved, what child could ask for more?

  8. sarafraser

    Thanks to you all for your insight and your thoughts. No resolution, but we’re happy with what we’ve decided and I feel like the right things are being done. Anyway, yeah. More to come.

  9. Rich

    Fish oil. No kidding. I know it sounds essentially the same as recommending snake oil, but I’ve seen it work in our 4 year old foster son. I know that my “evidence” is anectdotal at best, but our little man has been through the proverbial ringer physically and emotionally in his few short years…and we saw many signs of possible ADHD this year when he entered preschool. He was a whirlwind of manic activity, and he would never focus on you long enough to look at you when you talked to him. We began the testing process for ADHD, mainly because some of the things we were noticing also were listed on the list of red flags for autism. Realizing that it’s tough to determine what is ADHD and what is a 4 year old being a 4 year old, we didn’t want to medicate at this point even if it was prescribed. While my wife & I were doing research, we came across some preliminary studies that mentioned fish oil (and the omega 3 & 6 fatty acids) may help reduce some of the symptoms of ADHD. We figured we didn’t have anything to lose, so on a whim we bought a bottle of Disney’s Nemo Omega 3 gummi chews. (Speaking of a ready-made marketing opportunity–good on ya, Disney) My wife & I are both skeptical of most things, but after a week we noticed he wasn’t as on edge as normal. After 2 weeks, his teachers started commenting on the fact that he was sitting still for story time–something that had NEVER happened. Now after a month, I promise you he is a different child. He’s still a crazy, fun-loving 4 year old who tears around making airplane & train noises….but that’s NORMAL. I don’t claim that it’s a miracle cure by any stretch, and I know every situation is different. But honestly, it’s worth a shot (in my opinion). The worst that could happen is your little man takes a multi-vitamin which is good for him anyway. That’s my nickle’s worth.

    • sarafraser

      Thank you. Actually, the Montessori school we were looking at also suggested fish oil. I didn’t act upon it, but now I will. Again, thanks.

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