Feb 21

What is this OCD of which you speak?

My husband and I came to parenthood late and after a great deal of angst about lifestyle change. We were a career couple who shared a weakness for designer clothing and sharp-angled furniture that could impale small children. But with seven years of marriage behind us, I hated working as a corporate marketing director, and Larry was tearing through his forties. Then he was offered a new job in a new state. We had the smarts—well, Larry had a PhD—and a strong marriage, and now we could afford for me to be a stay-at-home mom. The only dangers I saw ahead related to our furniture …  but I had never heard of obsessive-compulsive disorder.

Before television detective Adrian Monk turned OCD into a household name, obsessions and compulsions represented two words in a dictionary to me, not an anxiety disorder that’s an allergy to life. Sure, my family had its share of oddballs, addicts, depressives, one schizophrenic, and a great uncle who shot himself in the head, but I knew nothing about faulty brain wiring.

Actually, I knew nothing about babies, either.  I left my native England before my friends had children, and Larry’s friends’ kids were older. But the British war mentality flowed strong in my genes, and I never considered motherhood could defeat me.

We studied hard for Lamaze but kept the sense of humor that our younger classmates found irreverent. When our coach asked the dads-to-be what they hoped to experience from the miracle of childbirth, my husband replied, “I want all the great drugs she’s getting.” I cracked up. Nobody else even smiled. Possibly they were still recovering from Larry’s suggestion that someone provide popcorn for the C-section video.

We stumbled through the baby milestones without a support system and marveled at our ability to adapt to chaos. Our Gerber bundle of joy slept well, ate well, and cooed in all the right moments. Zach grew into a demonstrative, funny, smart toddler who impressed everyone with his eagerness to learn and his love of words. “Tell me a story, Mommy,” he said over and over. “Tell me a story.”

The twos came and went without a single tantrum; the threes were a blast of creativity. We experienced only one small upset during those years, which, with hindsight, was a red flag: Zach had severe separation anxiety. Then our happy-go-lucky little guy, who couldn’t be apart from me, turned four, and our world began to collapse. It would take ten years to put it back together.

Fear found Zach, doubt found me, and Larry and I no longer agreed on how to raise our child. Zach became increasingly anxious, and all the instincts I had as a new mother disintegrated. Even the benign Winnie the Pooh story I chose for bedtime scared him to tears. Other mothers I knew worried about picky eaters, biters, and head lice, while I was on a mission—clearly doomed—to edit fear from my son’s life. (Because really, if Winnie the Pooh freaks out your kid, you’re sunk on that one.)

Friends and doctors happily shared opinions and advice, but all of them were wrong. It was another four years before Zach was diagnosed with obsessive-compulsive disorder and another two before we hit rock bottom. But here’s what I learned as my life tanked: at some point you realize the only way left is up.

My turning point came after a disastrous family holiday. I cried myself empty and then regrouped. Step one: know thy enemy. I hit the Internet and the library and educated myself about OCD. The first shocking truth I uncovered? Our child psychologist had been giving me the wrong advice. My research led me to exposure therapy, a form of treatment that forces you to face your fears, and to the child psychologist of our dreams. I informed Larry that since I was the full-time parent, he must follow my lead on all things OCD. He agreed, which was a blessing. I could focus my energy on helping our son and not on arguing parenting techniques with my spouse. And so the hard work began.

There are no shortcuts for fighting obsessive-compulsive disorder, no instant cures, no magic pill, and there were days when Zach and I cried in defeat. The worst part was the bitter truth that no matter how often I dragged him through exposures, no matter how much I played the cheerleader or the clown to get him through another day, I could never take away the pain. Only he could do that. And teaching a ten-year-old to retrain his brain ain’t easy, my friends. But, like a pair of Energizer bunnies, Zach and I kept on trucking.

Last month he visited Spain with his school and took three flights to get home. That, for me, was the equivalent of him winning a Nobel Prize. Ten years ago, coaxing Zach onto one short plane ride with us was akin to entering the ninth circle of hell. I could never have imagined a future in which he could take three planes, in the same day, without me as his OCD coach. But back then, I never imagined that at sixteen, he’d be an OCD success story.

He’s also a willful teenager with a good eight inches on me and an annoying habit of plugging in his electric guitar at 10:00 p.m. But after years of battling OCD, he’s compassionate, empathic, and more settled in himself than most adults I know. And he never lost his love of words. In fact, OCD has fuelled his writing and helped him become an award-winning poet.

Two Sundays ago, we spent the evening curled up together watching the GRAMMYs. We trashed people’s outfits, made inappropriate comments about certain performers, and screamed like crazed soccer fans when Muse won for best rock album. Larry was working, and it was just another mother-son evening in our house. And the best part? OCD had left the building.

Feb 17

boy, oh boy!

Luke’s first day of school two years ago — the straw that broke the camel’s back

When you set out to have children, you wish for a healthy, happy baby. You may hope for a girl or hope for a boy, but you know either is great as long as it is healthy. While you may have fleeting fears of illness or disability during pregnancy, you plan for a “normal” child unless someone tells you otherwise.

I, of course, was no different. With my first pregnancy, I was desperate to have a girl, and fortunate that I did. Three years later, I found myself pregnant again. I wasn’t so desperate to have a girl this time, although I was still terrified of having a son. I still had no idea what to do with a boy. But I knew early that he was a boy. Definitely a boy! He was already turning my world upside down.

My pregnancy with my son was difficult. Aside from the acne and heartburn, I had a chronic cough, shortness of breath (he was residing in my rib cage), and I ballooned before I was two months along. I was completely miserable just about every moment.

At 39 weeks I convinced my doctor to induce me with a little old-fashioned begging. I was physically suffering and fearing delivering a 10+ pound baby.

I should have known.

I was admitted to the hospital the following morning and began pitocin to induce labor. I was a very happy camper. The hours passed but I didn’t feel like anything was happening — it was still very slow going. It took many, many more hours before I was finally ready to push. By that time I was on oxygen, running a fever, had significant full-body shakes, and two Labor & Delivery nurses had been trying to find his heartbeat for what seemed like an eternity. People were rushing around me frantically — total chaos.

Then, as fate would have it, I began to vomit, and Luke was born. I don’t think I pushed once. I was never so happy to be sick to my stomach. And with all of that, my son made his very dramatic entrance into the world.

Okay Dr. Hill, I concede. You were so right — he was not ready to come out! To this day, my son still doesn’t like to be rushed.

Or maybe not.

He was a high-maintenance infant. He cried a lot and nursed every two hours at the very least. By the time he was two months old, he was spitting up most of what he was drinking and then immediately wanting more. An Upper GI scan confirmed nothing but significant acid reflux.

His toddlerhood and pre-K years were pretty uneventful after that as far as his health was concerned. He reached his milestones — rolling over, sitting up, crawling — a couple months later than the norm but not significant enough to worry.

Luke was a very quiet baby and toddler (once we treated the reflux). He was easy-going and spoke more with gentle actions and expressions than with words. I had always been grateful that I got a quiet child to balance for his loud and talkative sister, but one day I realized I had two very loud, active children. I assumed he just finally reached the age that he was taking cues from his big sister. I had no idea it was a sign of something more.

Through his toddler years, we never noticed anything more than toddler independence, defiance, and tantrums. Nothing that was out of the ordinary for a child that age. Nothing that was a cause for any sort of concern.

You don’t always learn everything you need in kindergarten.

When Luke entered Kindergarten in 2007, I thought he was a regular pre-K kiddo. He was so intelligent I knew he would do great in school, despite starting at a very young age.

His teacher called me for a conference on day two and said I needed to teach him to be more in control of his body and focused on the task at hand. Sure I can see a bright red flag waving in front of my face now. Then? I just thought her expectations were too high and he was just a normal, nearly 5-year-old, inquisitive little boy. I felt certain she hadn’t given the newness of school enough time to settle. But it settles and it only got worse.

We chose a new school, with a new teacher, for first grade the following year – I was confident Luke would find his stride and everything would be great. But just a couple weeks in I noticed a pattern of bad behavior reports coming home. Finally, I saw the red flag. I felt it in the sinking feeling in my gut too. That proved that it wasn’t the loose charter school atmosphere and it wasn’t the kindergarten teacher. Something was going on with Luke.

The teacher began making accommodations in the classroom for some of his learning needs and I took him straight to the pediatrician to talk about having him evaluated. At the time, I was convinced learning disabilities were causing his behavior problems. I read some about ADHD in books about learning disabilities but never gave it any serious thought as a possible diagnosis for Luke.

Nothing is as you expect it.

Luke has ADHD.

The signs were everywhere. From the long, difficult labor, the extra hours on pitocin, the delay in baby milestones, the sudden talkativeness, the difficulty controlling his body, the lack of focus in a busy classroom full of new activities to explore, the bad behavior from a very sweet and kind kid, the school failure from a highly intelligent mind… The signs really were everywhere but I didn’t know enough about ADHD to connect the dots. Each instance by itself can be something entirely different. But, dots connected, it is a clear picture of ADHD. It’s a clear picture of my son.

We’ve been living with the ADHD diagnosis for just over two years now. Over the months I’ve discovered Luke’s different-abilities run a lot deeper than just ADHD {as if that weren’t enough}. He also has Sensory Processing Disorder, some anxiety, and Dysgraphia (a learning disability that affects written expression and handwriting), as well as Gifted intelligence. It took two years to really get a clear picture of Luke’s differences and how to help him, and I’m sure there’s much more for us to still uncover. We take it one day at a time, one moment at a time really, to create the best life we can for our differently-abled son.

Pass it on.

While there are often many signs of developmental/behavioral/mental disorders from a young age, parental denial and societal scorn seems to bury them. In the future it will be easier to accept these differently-abled children and see them for their many gifts when our communities are educated enough not to judge. We must continue the conversation about our children’s differences so we can change their experience.

Join our conversation about ADHD and Learning Disabilities at  {a mom’s view of ADHD}.

Penny Williams is the creator of {a mom’s view of ADHD}, where she writes candidly about the everyday experiences of parenting her young ADHD son and her neglected-feeling, neurotypical tween daughter. She is the author of Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She’s also a real estate broker, freelance writer, mother of two, and wife. Read more of her essays on ADHD in ADDitude Magazine and on her website.
Feb 13

A Different Perspective

I see so many articles on children of elementary age. Been there, done that. My journey is a bit longer, lasting over 29 years for the most part. My AD/HD child, Cory, the subject of one of my books, is now all grown up and I am able to see what my mom efforts have brought forth. It is a wonderful time in life to sit back and say, “Yeah, you got it right.” At least, mostly right.
What helped? Practice, persistence, and listening to my gut about what my child needed, despite advice from friends, relatives and teachers. The pathways I pointed him to made a difference in the future. Keep on keepin’ on, always with a smile and a dash of perspective. One day at a time. Sometimes one minute at a time. And be as proactive as you possibly can.
“But, Mom, you never told me I couldn’t take my hockey stick to school!”

Feb 09

My child is easy to love, but boy oh boy, he is *hard* to raise

kissIt’s 6:00 in the morning, and my husband, Mark, and I stumble around the kitchen, groggy, waiting for the coffee to perk and the bagels to toast. Our 8-year old, Little J, stomps into the room. He doesn’t answer our good mornings, doesn’t make eye contact, and doesn’t return our smiles. Instead, he yells: “For breakfast I want macaroni and cheese from the day after yesterday and two eggs! Cooked sloppy!” He pauses for a moment, then blurts, “please!” and flits out of the room, off on a mission only he knows, but likely involving PVC pipe, permanent markers, and the dogs.

Two minutes later he returns. “I forgot. Good morning, daddy,” he says, his voice a monotone drone, an octave lower than most boys his age.

“Good morning,” Mark says. “For breakfast do you want mac and cheese and eggs?” We’ve learned that it’s safer to try to get confirmation of Little J’s wants before cooking. That way when he refuses it, cries, screams, or even throws it – which experience has taught us are all possibilities – we can remind him that he not only said what he wanted once, but twice.

Little J hesitates. “Yes,” he says, but his head is shaking no. No. No. No. “Just a minute,” he says, like we’ve been practicing. He looks Mark in the eye and holds his head still. “Yes. I mean yes.”

“Awesome job asking for what you want,” I say. And I mean it. I can’t take things for granted with this child that I would with any other child. Knowing what he wants and asking for it appropriately does not always happen. Some days, yes. But not every day. His sheer unpredictability is highly predictable.

Little J is 8, and this “yes,” even accompanied with the no-shaking head, has been a long time coming. Six years and three months, to be exact. Six years and three months of toddler-like behavior from a child whose growing body and intelligence have often been at odds with his emotions and self-control.

I can’t take things for granted with this child that I would with any other child. Knowing what he wants and asking for it appropriately does not always happen. Some days, yes. But not every day. His sheer unpredictability is highly predictable.

When Little J came to us he was 15 months old, a gorgeous, affectionate boy who sat in my lap for seven hours on the airplane ride home, drooling on my hand, kissing my face with the open-mouth kisses that babies do best, and staring at me and my husband with eyes framed with the longest eyelashes I’d ever seen on a baby. Two days before, a judge had granted our adoption in a small courtroom in Voronezh, Russia, and three hours later the babushkas were handing him to my husband and me, calling me ‘mama’ and commenting on the confident way I handled the baby. He couldn’t walk, had no language, was pale as a mushroom, and ate as if starving, but the international adoption doctor who reviewed the videos we sent said he was one of the healthiest children he’d ever seen from Russia. An excellent referral.

He was, and is, excellent. Excellent but different. Excellent, but challenging. Excellent, but hard to handle.

Within a day he was walking, probably held back because of lack of encouragement and modeling, and within three days he was using baby signs like a pro, especially when it came to food. He ate and ate and ate until he vomited, then he ate some more. He was malnourished and anemic and severely underweight but within 3 weeks he had gone up 2 sizes in clothing and by 3 months he had gained fifteen pounds, nearly doubling his weight. Hi head grew 3 centimeters in 3 months. He hit all his milestones in his toddler years like a champ: he quickly became self-sufficient, inquisitive, spirited, independent. He developed the all-important will that makes children of two say “no” to everything…but as he turned 3, and 4, and 5, and now 8…it never left.

That, plus his speed-demon, sensory-seeking behavior, his fearlessness, his rages and tantrums and destructiveness, his teeny-tiny attention span, took us from pediatrician to therapist to psychologist to psychiatrist. The diagnoses flew: ADHD, SPD, ODD, PDD, ups and downs of a cyclical nature (hmm…). Medications were prescribed, tried, failed, and prescribed some more. I read every parenting book, every book about ADHD, SPD, ODD, explosive children, nurturing hearts, love and logic, challenging children – you name it! Through every medication, diagnosis, book, and expert we learned something, used something, and discarded others, until finally we came onto the final diagnosis that made sense: fetal alcohol spectrum disorder.

Finally, we seem to be at a truce. His behavior has been stable for about a year and as parents we’re starting to wrap our heads around what we need to do to have peace in our home. Maybe we’re in a place of acceptance? More likely, we’ve grown tired and need a break. It’s so hard fighting the battle!

In any case, maybe by reading this you can understand why I say my child is easy to love, but so, so hard to raise. And perhaps because you’re reading this, you have your own easy to love, hard to raise child as well.