I’m getting to the bottom of this. I have an amazing son with ADHD…and the more I learn, the more I’m seeing the impact that food has been silently adding to his challenges — probably from the very beginning. I am now in a stronger position (read: way less overwhelmed than I was a year ago) than I’ve been in to start peeling back the many layers that I suspect have lead to some of his unpredictable and impulsive behaviors. I look at last year as the year which we got his ADHD under control, as his self esteem was rapidly plummeting and his interest in school was waning. I am currently staging a longer-term effort to address the nuanced and seemingly invisible pieces that continue to impede this fantastic kiddo.
I should say from the outset that in no way do I doubt that ADHD is a very real disorder. I know it is. We live with it. I have adult friends with it and friends with children who struggle daily. If you are of the camp that it’s a fake disorder, there are plenty of other places for you to share your thoughts. If you’re on the fence, maybe you want to stick around to learn a little before you decide to tell me that I’m just a bad parent. If you’re looking for ideas for your own life, maybe our little journey will help you see yours a little more clearly. Or maybe you’ve been through this all and can share your ideas.
The more I read, especially all of those anonymous online comments following ADHD articles (my husband still doesn’t understand why I continue to read them!), the more I realize that many (most?) people think that ADHD is made up and it’s just an excuse that lazy and/or bad parents use for not having control over their child. It is already challenging enough as a mom to try and address the needs of any of her kids. Trying to be one — or twelve — steps ahead of a child with ADHD is extra challenging. Then, combine that with the stigma associated with ADHD that doesn’t necessarily come with other disorders faced by children (and adults). Comments like, “Well, who doesn’t have ADHD these days?” or “We’re all a little ADHD, aren’t we?” “Maybe parents need to start spanking their kids again…parents are way too lenient these days.” “ADHD didn’t exist when I was a kid. We all survived.” “Parents are just too quick to drug their children before they look for real solutions.” “ADHD is a conspiracy of big pharma and doctors everywhere.” “French kids don’t have ADHD.” The comments go on and on and on. In the process, they erode the real issues that people actually living with ADHD face. Of course, we all lose our keys every now and then or forget why we went upstairs. We space out or get distracted. Life is busy and it’s easy to forget things. That’s not what I’m talking about here. This is all the time, on a regular basis, despite your best effort. And then on top of living that way, you’re often told that you need to try harder…or that you’re not trying at all. I know I used to say that to my son. What I’ve learned is that most of the time, he is trying harder just to live up to expectations (yet still falling short) than anyone else I know.
I’ve learned to ignore most of it, although I’d be lying if I said that it didn’t upset me that not only do I have to fight our insurance company for coverage of the only medication that has worked for my son (yes, we made that very hard decision to use medicine and I’m sure that a few of you have some herbal supplement and deep breathing exercise that you can suggest as an alternative, but I’ve read it all and have probably tried a lot of it), but to think that I also have to defend that my son’s ‘condition’ is actually something real is not an effort for which I have much energy.
If you live with someone who has it, you know that it is no joke, for real, a whirlwind spinning through your house and your life! And your job is to figure out how to support and nurture this mile-a-minute kid to glory in a culture that expects all kids to sit quietly.
I realize that there are many variations of what ADHD or ADD look like for different people. I am not an expert and my goal is not to talk about what they all look like (lots of resources out there to leaf through). This is about my experience with our own little personal tsunami child!
He is my third and he followed pretty quickly behind my twin daughters. I didn’t know I was pregnant with him until I was 10 weeks along. Partly because I went through 2.5 years of infertility for the first pregnancy — with the less than helpful diagnosis of Unexplained Infertility — then, when I was 4 months along with my twins, my husband was diagnosed with testicular cancer. Luckily it was stage one and treated with surgery and radiation…and while they suggested that this treatment might lead to permanent infertility, it wasn’t for certain. Plus, twin babies who didn’t sleep, me being touched-out by these little ladies, I honestly can’t even recall that my husband and I would have had the time or energy for me to have a surprise pregnancy, but it happened!
When I went in for my ultrasound to confirm how far along I was, the doctor had a hard time getting a good read on my son’s heart rate (to date the pregnancy)…not because he was hiding or anything, but because, “Whoa! I can’t seem to catch this baby! It won’t stop moving.” I look back and laugh. I guess he’s never been good at staying in one place for too long!
He crawled early. He walked at 9 months. Once he walked, he started running. He stopped napping younger than he should have. He talked sooner than I expected…in full sentences…and then never stopped. He was the last cousin to crash after long Thanksgiving celebrations and the first to turn little kid birthday parties into something John Belushi would be proud to attend. Then he’d escalate before passing out. He could spontaneously read in nursery school, but also spontaneously hit someone if his friend told him it was a good idea. He was the first kid to know the answer but also the first kid to yell it out…every single time. His enthusiasm for life has pulled in — and kept — some great friends and that same ‘enthusiasm’ led his kindergarten teacher to request a hearing check because of his sheer volume. (He can hear just fine). His confidence has always mirrored that of, say, Bill Clinton’s for no apparent reason. I think almost everyone in school, no matter what grade, for better or for worse, knows who he is. I overhear kids around town point to him and say his name. He wore an eye patch for 18 months with the same style that he now wears his gigantic Grumpy Cat sweatshirt or his hot pink unicorn knee socks.
As much as people often assume he isn’t paying attention to anything, he, from what I know, is paying attention to everything. A clinician who has worked with him figures that he is probably taking in 4 times the amount of information at any given time than a typical person. Eye contact is hard because that requires him to take that in, also. All too much sometimes.
For a kid who is always assumed to be a bit aloof or too kinetic to notice things, he would come home from nursery school as a three-year old and tell me who he thought was having a bad day and what happened to him or her. After Running Club this fall, I watched him walk over to an older kid who was crying on the playground. A few boys were quietly making fun of him. Adults weren’t taking notice. My then 8-year old figured out that this boy was sad, why he sad, and walked over without fanfare, handed him his own little bouncy ball, patted him on the back and walked away. I guess the kid had thrown his ball on top of the school and stood there, knowing he’d never get it back. Nobody else seemed to pay attention. So, for all of the whirlwind and energy and noise created by my 9-year old, he also has this deeply empathetic space that is so often overlooked.
Rewind to the time before we started putting all of these pieces together. In all of this, and with 2 other kids, it was hard for me to notice many of the details and nuances along the way. I wish that I had that skill, but I think my role as mother went from crazy lady with newborn twins to that of triage nurse as soon as my son was born 20 months later. As long as they were fed, happy, generally injury-free, and sort of clean by the end of the day, I felt like I had done my job. Sounds easy enough….right? Now add in unexplained meltdowns, rages, and anger similar to that time you drank too much tequila in college, got in a fight with your roommate, stormed around campus with a vengeance and then collapsed into a heap with no recollection of why any of that happened. And now getting through the day had gotten exponentially harder.
I blamed myself. I wasn’t doing enough. Should I be better at timeouts? Or maybe I should be better at patience. Did he get enough sleep? Did something bad happen to him at school? Was something REALLY REALLY wrong with him? Was he going to get a neck tattoo and join a street gang of 5-year olds? I really had no idea. It was also hard to talk to friends because this behavior wasn’t something that should still be going on in kindergarten or first grade. I was embarrassed and ashamed and couldn’t begin to express how hard I was already trying. While always having all of the personality and energy that I already described, he had this unpredictable angry streak that seemed to come out of nowhere with no predictable pattern. And as quickly as it would arrive, it would fade away.
I lucked into a conversation with another mom one afternoon that changed everything for me. She was telling me about the daughter of one of her friends who had a one-on-one teacher’s aid at her private school. Her behavior was unpredictable and disruptive. I’m sure that she had some official diagnosis. They ended up doing a serious elimination diet and were able to miraculously pinpoint her behavior to the common preservative, BHT. Once it was removed, she no longer needed her teacher’s aid. This amazed me. I started reading more about that and then tripped upon food dye discussions. (Die, Food Dye has been an incredible resource for me). This was a phenomenal moment. All of a sudden, the unpredictable and escalated behaviors started making more sense. That time when he was 3 and was about to pee in the middle of my mom’s living room while laughing hysterically was preceded by a treat of a giant, bright blue scoop of ice cream. The long car rides of out of control behavior while snacking on Skittles or what other people labeled as his enthusiasm at birthday celebrations, but I saw as sheer insanity after grazing on brightly colored treats for the previous few hours.
I was skeptical of this connection and thought that I may just be looking for a scapegoat. The more I read, however, and the more I witnessed in our daily lives, the more I realized that his reaction was the real deal. We started removing all food dye and additives from his diet, shampoo, toothpastes and soaps. But it wasn’t 100% gone. We would give in and then we’d all spend the next day…or four…dealing with a madman. We then removed food dye almost entirely before we started down the path of an ADHD diagnosis.
We’ve gotten more stringent and he’s now self-regulating his intake because he knows how bad it makes him feel. He can say no thanks to random lollipops from the bus driver without too much regret and will stop eating something tasty mid-bite if he figures out it probably has food dye. While still a mile a minute, he is way more predictable, even, and pleasant than he was before we knew any of this. Discovering this correlation has changed so much.
Since having success going dye-free, I decided to explore this food/behavior connection more deeply and recently had him go through with the LEAP MRT food sensitivity testing, to see if there are other things that he eats regularly, which could be having the same impact. We may find nothing or we may figure out that, say potatoes (that he tested sensitive to) may trigger something in him just like that pile of yellow food dye!
We have just embarked on a 35-day personalized food elimination diet. I’ve spent the last week or so pulling together some sort of meal plan for our Phase One, which will last 8 days. This is the most restrictive phase, as I have only 25 ingredients to work with and a kid who is an incredibly picky eater. So far, I feel like I’m on a never-ending episode of Chopped, scratching my head over what to do with tapioca and turkey.