Sep 06

OCD goes to college; Mom stays home

I have just transitioned from being a full-time mother to being the long-distance parent of an undergrad. Just another college mom mailing off care packages, right? Wrong.

My eighteen-year-old has battled obsessive-compulsive disorder (OCD) for most of his life. It waxes and IMG_1762wanes, but it’s always there. Lurking. OCD is a crippling anxiety disorder that loves to hide in the shadows. If you met my son, you would describe him as smart, funny, charismatic, empathetic, drop-dead gorgeous. An award-winning poet and musician, he’s a straight A student with tattoos, rock star hair, and a killer smile. You would never guess he manages an invisible disability.

A week ago we waved goodbye outside his dorm room, and my husband and I started the ten-hour drive home—in silence and tears, followed by my strange desire to listen to The Monkees. (Some weird throwback to Shrek?) I’ll be honest, the next few days sucked. Continue reading

Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

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Oct 11

OCD Awareness Week

By Barbara Claypole White

Every OCD Awareness Week, I hug my obsessive-compulsive son—also called the Beloved Teenage Delinquent—and remind myself how hard my family has worked to defeat the anxiety monster. This year is a little different. OCD Awareness Week 2012 is a bitter reminder that OCD returns.

Writing has always been my therapy and my escape from a life framed with obsessive-compulsive disorder. When my son was little and struggling with undiagnosed OCD, I retreated into a manuscript that evolved into my debut novel, a love story with an obsessive-compulsive hero. Last year when I signed a publishing contract for The Unfinished Garden, my son was OCD-free. As my book baby launched into the world, the OCD was back after a three-year hiatus.

OCD round two has been easier and harder. Yes, we have the hope that comes from understanding our enemy. Been there, done that, the T-shirt still fits. But the emotional lessons are tough. We’ve cycled through denial and anger and acceptance.

This OCD Awareness Week, I want to remind myself of the following:

I will never be ashamed that my son has an anxiety disorder. The stigma of mental illness is so last century. 

I will celebrate each appointment with the child psychologist and feel blessed that she is part of our lives.

I will accept that some days my son is too overwhelmed to fight OCD. Even professional soldiers know when to retreat. Regrouping is not surrender.

I will never hesitate to lock myself in the bathroom and cry. Crash and burn, baby. It’s okay to fail.

I will take a mental health day when I need one—away from the people I love.

I will never hide the truth that my son needs medication. If he were a diabetic, he’d take insulin. Why is swallowing an SSRI to boost his serotonin levels any different?

I will never cringe when OCD rears up in public. My son has an invisible disability. Some people will understand; most will not. The ones who won’t? That’s their problem, not mine.

I will never make excuses if my house is in OCD crisis mode. Triage living comes with the territory.

I will always shout to the world that my son is my hero. A brilliant student, an award-winning poet, and a gifted musician, he refuses to let OCD hold him back or define him. It’s his inspiration.

When people ask what it means to be obsessive-compulsive, I will say: Take a fear, any fear, and amplify it to the point to debilitating anxiety. Imagine that fear in your chest, in your throat, in the fingernails that want to claw off your skin. Now imagine living with that fear every second, of every minute, of every hour, of every day. Sometimes it’s background static, sometimes it’s stereo surround sound, but it’s always there, waiting—an allergy to life. Now imagine the courage it takes to fight that fear.

Every day I will recite my son’s mantra, “OCD will never win.”

To mark OCD Awareness Week, I will be giving away a signed copy of The Unfinished Garden. For a chance to win, please enter a comment below with your email address.The winner will be picked at random on Sunday October 14th and notified via email.

Jul 31

OCD on Island Time

The annual beach holiday for the obsessive-compulsive family is the best of times and the worst of times. It can be a calming cocktail, and it can trigger specific fears. It can be a time to go with the flow and a time to cling to habits honed after years of taking the same vacation to the same spot—with the same set of worries.

1)   The luggage is going to get lost. This starts from the moment we wave goodbye to our checked bags, and is the reason I insist everyone packs a bathing suit, a beach tee, and clean underwear in his carryon. (Plus those 1oz tubes of suntan lotion that fit nicely into little Ziplocs of toiletries.) Is this pandering to OCD or being a smart traveller? Who cares, because once you arrive at your destination, you’re too exhausted to share the remnants of your sanity with OCD. If being prepared expands your comfort zone and ensures one stress-free beach day while your luggage takes the slow boat via Borneo, go for it.

2)   Summer’s almost over. From day one of our family vacation, my son’s OCD bats around an endless loop of, “The summer’s nearly over.” This sucks, because the last thing a burned-out parent wants to think about is a holiday finishing before it’s begun.  My instinct is to sing, “La, la, la, la, la, I can’t hear you,” and fix a rum and coke, which isn’t terribly helpful. But trying to encourage an obsessive-compulsive to focus on something else, such as the beauty of the ocean, can lead to number three.

3)   Fear of tsunamis. This is a difficult fear to out-argue, since we’ve all seen footage of the 2004 tsunamis on YouTube. I opt for good old-fashioned logic—what are the chances?—and point out we’re on the top floor. We’re always on the top floor…

4)   Jellyfish stings are fatal.  My son’s first jellyfish sting freaked us both out. Since then, we have learned to carry meat tenderizer in the beach bag and research poisonous jellyfish. Did you know that a Portuguese Man O’ War isn’t really a jellyfish? No shit.

5)   A hurricane’s coming.  We live in North Carolina and rode out Hurricane Fran in our basement. Again—where do you draw the line between a logical fear and OCD? Yes, we’re plum in the middle of the hurricane season, but every cloud does not contain a hurricane. And what are tropical storms, if not an excuse to stay inside and read? Or watch Love Actually on DVD.

6)   The swimming pool is dirty. This is a classic contamination fear. And yes, I can argue I have no desire to swim in a dirty pool, either. But I used to swim competitively; I saw what chlorine did to my bathing suit.  Personally, I’d worry far more about the chemicals…

7)   I’m going to catch a deadly tropical disease. I’m pretty sure there’s never been an outbreak of Ebola here, but I may need to Google that…

8)   Grease and grit, aka suntan lotion and sand. I have no idea whether this is a sensory issue or an OCD thing, but I have learned expensive UV shirts are a waste of money. Yes, they do a grand job of blocking powerful rays, but no matter how many times you wash them, you cannot remove all the sand particles. End of story. And we all hate suntan lotion. Get over it.

9)   Sea monsters lurk in the deep. Jaws may be the reason I swim very, very fast when coming back from the buoys, but Krakens are mythical creatures. That’s just plain fact.

10)   Our flight’s going to be delayed. Yeah, you’ve got me on that one. But it’s irrelevant since the plane’s going to crash on the way home and we’re all going to die. Right?

www.barbaraclaypolewhite.com

 

 

 

May 03

OCD and Seasonal Exam Hell

My garden is exploding into color; the hummingbirds are buzzing; and my son is in full-blown test anxiety. ‘Tis the season I hate.

As an obsessive-compulsive, my teenager operates from a high base line of anxiety. Yes, one of his favorite authors is Stephen King, and yes, he and his buddy enjoy screaming through horror movies like a pair of preschoolers on a sugar rush. But one “study for math test” scrawled in his assignment notebook, and I’m handing him Klonopin before we’ve pulled out of the school parking lot.  More often than not, I’m thinking, “Damn, if I weren’t driving, I could have a happy pill, too.”

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Apr 04

Someone Has Some Explaining To Do

Another parent-teacher conference has come and gone and this year, I find myself a changed woman. You see, in years past, I have always seen conference time as an opportunity to advocate for my children. It’s been my time to check in to make sure their teachers understand what makes them tick. I’ve enthusiastically shared tips for reading the body language of anxiety, patiently tried to explain how OCD can look like ADD, and pleaded for an email at the first sign of any behavior changes (which for my kids can mean a PANDAS relapse is on the horizon). Over four years, my audience has sometimes indulged me and sometimes even been genuinely interested in learning and sharing. Sometimes, I’ve been met by that polite yet pained smile that tells me I’ve just been labeled “the neurotic mom who clearly needs a valium.”

 This year, spring conference found me jaded. Whether it’s me who’s changed or just an unfortunate failure to connect, I haven’t been able to click with my kids’ teachers. Instead of wanting to use my fifteen minutes to foster understanding, I just followed the typical script, heard how my kids were making progress and made a timely exit.

Where did that naïve, driven, committed mother go? Could my passion for wanting to change hearts and minds really dry up in only four short years? Or am I just past the point of having the energy to re-explain everything year after year? When I first learned about OCD, I was eager to share what I knew. Now, after so many failures to reach my audience, when I hear “Gee, he doesn’t seem to wash his hands any more than the other kids. I really don’t see any OCD,” I should realize that this isn’t said to be hurtful. It’s a sign that OCD remains poorly understood and that teachers aren’t being given the training that could help. But in that moment, after being on the receiving end of so many similar comments, I just want to stand on top of the desk and shout “You ninny – not everyone with OCD washes their hands!” How I wish I could find a way to explain that long goodbyes in the school lobby do not make me a helicopter mom but instead allow my child to slowly disengage at her own pace; give her the power to start the day with a small sense of control instead of having the noise and chaos of a bus trip overwhelm her before she’s even set foot in the building. I guess I’m not losing my passion so much as I’m getting discouraged. Continue reading

Mar 23

Shit, the OCD’s back

As a writer, I get to create characters I love and torture them. As a mother, I get to watch anxiety and irrational fear play mindfuck games with my brilliant obsessive-compulsive teen, while I try not to feel helpless.

I never used to swear—I have OCD to thank for that. (At fourteen, I accidentally let slip one goddamn and was reprimanded with a “Listen here, young lady” tirade I remember verbatim.) But once OCD slithers into your home, you learn to play dirty.

Know thy enemy is the first rule of sharing your child with an anxiety disorder. After I learned that lesson, I jumped into the OCD arena, fists swinging. Which brings me back to profanity….

One of my son’s earliest OCD fears was that he would accidentally swear at me and I would die some horrible death as a result. When we entered into exposure therapy, it became clear my role as OCD coach would include persuading my nine-year-old to bad-mouth me. The day he found the courage to call me an asshole, I glowed with maternal pride.

(I know, living with OCD changes the ground rules of parenting.)

By the time our child psychologist suggested diffusing anxiety with a calming sentence, we were proudly creating fragments of expletives. So we upped the ante. And stole our Om phase from Billy Mack, the aging rock star in Love Actually, who speaks the immortal movie line: “Fuck, wank, bugger, shitting arse, head in the hole.”

I dare you to say that when you’re fearful. Works like a shot of beefed-up chamomile tea.

After we expanded our vocabulary of obscenities and became well-voiced in cognitive-behavioral therapy, we marched through years of exposure therapy and signed up for what Marian Keyes—the fabulous Irish author—calls anti-mad pills.

I refused to quit and I refused to let my son quit. I mapped out exposures like battle strategies, took endless notes in meetings with mental health care professionals, and connived to steal alone time with the psychologist. Eventually, our hard work paid off. OCD slunk into the shadows, my son plowed through a brave new world of firsts—first international school trip, first solo plane ride, and I forgot the shortcut to the psychiatrist’s office.

Then junior year of high school slammed into us with the force of a rogue wave. It’s hard to explain to the outside world what OCD looks like. Certainly not my charismatic son with the kilowatt smile, GPA off the charts, numerous awards, and a perfect score on one section of his SAT. But OCD is like a character in More, More, Said The Baby. Enough is never enough. And the buzzword for junior year is more: more AP courses, more achievements, more college visits.

As the pressure piled up, I found myself scrabbling to manage my son’s stress in the same way I had done when he was younger. (You don’t need a Ph.D. to figure out stress triggers anxiety, right?) But this time he was older, wiser, and more articulate—with a dazzling array of cuss words and a good eight inches on me. And I had to master the hardest parental lesson of all: backing off.

No more fist swinging. In fact, the opposite. I had to accept that I could no longer coerce him into exposures or guilt him into practicing the CBT techniques that were branded into his subconscious. What I could do was listen and understand, and offer unconditional support when he said, “I’m not strong enough to fight back today.” I learned that my son didn’t need to win every time—in life or against OCD. Pulling back to regroup isn’t quitting. It’s accepting limitations and knowing that sometimes less, not more, is the answer.

In many ways, I’m thankful the OCD resurfaced now, in junior year. Because here’s the thing: shit happens. (Really, I didn’t use to swear; I’m a minister’s daughter.) And when shit happens, OCD is waiting to pounce. It’s a fact of my son’s life, and in a year and a half, he’ll be dealing with all kinds of crap by himself in some grotty student accommodation. Thanks to the hell of junior year, he’ll be prepared for that future to include OCD.

Eight years ago, I was the parent hovering in every session with his psychologist; now I’m the person in the waiting room. Before long, I’ll be the voice at the end of a phone line. But that’s the way it should be, because even ELT kids have to leave the nest. For the first time, he’s taking responsibility for managing his own mental health. Me? I’m as proud of him as I was the first time he called me asshole.

 

 

Mar 12

Diagnosis: Bane or Blessing?

In the Huffington Post article, Is Sensory Processing Disorder the New Black?, the story of mom Samantha and how she handled identification, diagnosis, and treatment of her daughter Lucy’s neurobehavioral disorder matches closely my own experience with my twins who struggle with Sensory Processing Disorder (SPD) and pyroluria, and echoes the voices of many of the parents whose essays appear in Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories.

Like Lucy, my boys presented with a wide variety of symptoms, each of which could be connected with a handful of potential diagnoses including Aspergers, Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD), but no disorder on the books described our children completely. Also like Lucy, when we turned to our naturopathic physician and modified their diet and nutritional supplements, we began to see dramatic improvements. Those around us said, “Perhaps they’re growing out of it,” but we knew that behind the improvement were desperate, hard-working parents searching for a solution, unsatisfied by a band-aid.

Next year, my 8-year-old boys will likely test out of their public school special education status. Our lives look drastically different than when we entered preschool three years ago. We wouldn’t be where we are now if we hadn’t found our SPD diagnosis and opened our minds and homes to changes in diet and supplements with help from our naturopathic physician, Jean McFadden Layton, nor would we have maintained our sanity in the process without the supportive community here at Easy to Love….

Article authors Heidi Brod and Kelly Dorfman, MS, LND seemed to be writing about us all,

“Samantha stopped blaming herself for a child overwhelmed by anxiety and mood issues. She also started to realize the depth of a mother’s guilt. It sapped all of her energy, leaving her tired and depleted. I think of Samantha’s story and I’m reminded as a woman and a mother, that at some point, we need to be detectives, follow our own hearts and instincts. Nobody knows our children better than we do. We also need to give ourselves a break.”

So here’s to all you tired parents reading this blog and the HuffPo article, seeing some part of your life or your children there. Brod and Dorfman are right, you deserve a break, so give and take it freely.

Jan 30

The Label of Mental Illness

Hello my name is stickerI have diabetes. I’m an alcoholic. I have cancer. I’m bi-polar.

A label can speak volumes. We use them all the time. But why do you have diabetes but you are an alcoholic? Why do you have cancer but you are bi-polar? All four are physical diseases. Yet the diseases that impact our below-the-skull body are things we unwillingly have while the diseases that affect our minds are things we are. Implicitly, a disease that attacks your tissues is beyond our control, while a disease that influences our thoughts and actions is somehow a deliberate choice; a part of our essence, as if we’ve decided to have mood swings for the fun of it or could control our inattentiveness if only we wanted to badly enough.

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Jan 26

Crazy Little Thing Called OCD

OCD is a slimy little bastard. It mutates faster than a shape shifter in a fantasy novel, and just when you think you’ve got it in your sights, it morphs into something uglier, meaner … better gunned. It’s also the reason I’m taking my fifth Imitrex of the week—to combat the migraine that just keeps on giving.

At this point in my blogs, I normally brag about my son being an OCD success story, which he is. But OCD has no cure, no expiration date, and, as with diabetes, has to be monitored and managed. Old triggers have a nasty habit of popping up when your kid is stressed or sleep deprived and unable to fight back. Last week, this happened to my son.

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