When the school’s number flashes on my phone screen, I can’t help but feel that familiar tightness in my chest. Five years of conditioning don’t fade easily. My mind automatically travels back to the day when my four-year-old son, in a burst of frustration, pulled out his friend’s cochlear implant. I can still feel the weight of those tears as I sat listening to yet another incident report. I was at a loss.
That was then.
Now, as I reach for my phone, I remind myself to breathe. The past five years have been a marathon of sorts – over 300 hours of therapy sessions, countless psychiatric appointments, and endless moments of focused determination. Slowly but surely, we’ve been rewriting our story.
These days, I get to see more of the real Wesley: a charismatic nine-year-old with an infectious laugh who can spend hours gaming, never turns down ice cream, and has mastered the art of making people laugh. It’s as if a fog has lifted this year.
When the latest email from school arrived, I braced myself out of habit. But instead of the usual concerns, I found myself reading and rereading words I never expected: Wesley had been nominated for the Proud Python award for safety, responsibility, and respectfulness.
Walking into the gymnasium for the ceremony felt surreal. I felt that at any moment someone would realize there had been a mistake.
Then came the best moment – Wesley was called up to stand next to the other award winners for the month. And halfway to the front of the gymnasium, my silly guy broke into the ‘gritty’ dance. The children in the audience cheered even louder.
And at that moment, watching my dancing boy and hearing the genuine delight of his peers, I felt such pride. The path ahead might not be perfect, but we’ve found our footing.
We’re going to be more than okay. He’s going to be extraordinary.
Third grade has been uniquely challenging for Wesley. His severe OCD and ADHD make it difficult to learn and operate the way a kiddo in 3rd grade is expected to.
Repeatedly through the year he has shared that he wishes he could do his life over again. This is why I’m really struggling to stomach what he shared with me this week. He finally admitted that he feels he can never measure up to his teacher’s expectations. He often wants help but has become hesitant to raise his hand. Then the bomb dropped on my heart. He shared that she makes him feel “Like…I’m not part of the world.” “Oh really, that’s terrible!” Do you think other kids feel that way too? No. Does she make you feel embarrassed? Yes, every day. On a scale of 10 how much does she make you feel weird, like you don’t fit in? “20.It’s just wrong.“
I’ve been waiting for this. The hard-nosed educator that drives hard on outcomes. The one that most kids can rise to the occasion for. I’ve been waiting for this because so much of this approach represents who I was with Wes before countless hours of training, learning and experiencing humbling moments facing the OCD flea. IF ONLY. It’s just not that easy. Logic doesn’t work. Only grace and love works.
As his mom, his protector, these experiences leave you feeling so incredibly helpless. Should I shift him to a special needs school? Hire an in-home teacher? Otherwise, I have to send my son into an environment that is slowly hardening his heart. After he shared his feelings with me he was adamant that discussing anything with the school was useless. It hurts me so deeply. Angers me. This teacher is getting the best version of my son so far. If only she could have seen my son with his eyes glazed over, manic and unreachable.
This educator is teaching us something. It’s just not what she thinks it is. We are learning to adapt, to cope, to advocate, to forgive. And, before bedtime each day for the forseeable future, you’ll find me pulling out a daily checklist I’ve created to check in with my son on the things that really matter – the things that weigh into his mental health.
“Wes had an incident today in Art class.” My heart instantly dropped and my chest tightened as I listened to the principal explain why Wes was in her office. I held my breath as I waited for the worst. Did he throw chairs? Rip something apart? Flashbacks of earlier years still occupy a ridiculously too readily available place in my mind, even after an official diagnosis and almost 2 years of exposure therapy and modern medicine.
I hate it. He’s been doing SO well.
I had noticed the last couple of weeks had been difficult for him. He seemed more agitated. It was harder and harder to get him to leave one task to move to another. He was making inappropriate jokes constantly and couldn’t seem to stop. He seemed more hyperactive and his sleep started to suffer. The night before the incident in art he stared at me with as much energy as a pro athlete ready for game time and said he couldn’t go to bed. He crawled into our bed at 2AM, wide awake. I tried multiple sleep stories and calming sounds to coax him back to sleep. Finally, I heard his breathing stabilize and his body relented to MUCH needed rest.
The awful night led to an even more awful next day. He had jetted into the class straight out of the gate and couldn’t calm down. He was digging holes into his journal, re-sharpening the same pencils and struggling to focus on the task at hand. OCD was staging a counter-attack right under our noses.
In Art, Wes raised the S.O.S. signal in the only way he knew how: Losing control. The whole class was working on a picture for an art fair. When Wes explained the project his eyes bugged out as he exclaimed, “It’s a BIG DEAL.” That day, they were adding a tree to the picture and Wes shared he was struggling to attach it when the teacher announced they had only three minutes to complete it. He was panicking inside and trying to work through it by being silly. One thing led to another and story went that he was running around with scissors in his hand and ended up in time out make inappropriate noises and making inappropriate gestures. UGH.
I wish this was as little of a deal as what it would be for other kids. It’s not for us. Wes has Just Right OCD and these small signals tell us only a fraction of what’s really going on inside his brain. OCD is invisible. And, one of the manifestations for Wes is extreme anxiety when something is left incomplete – an assignment, a project, a piece of art. It’s a life or death situation for him. Imagine if you didn’t put a tree on your page feeling like you’d receive a prison sentence for example. He is unable to process leaving things incomplete in the same way a normal kid can. To help him, we’ve done several exposure therapies over the last year where he leaves things incomplete and has to just stare at it repeatedly so he can get use to the terrible looming feeling he experiences. He has to learn to desensitize himself to it. And, that sucks.
One of Wes’ default coping mechanisms when he is feeling anxious is what I’d call ‘extreme’ humor. He’s 7 so it’s boy humor on steroids – filled with potty words and fart noises. When you add the ‘extreme’ part to it, these behaviors are also I think easy to see on the outside and conclude there must be some bad parenting and exposure to inappropriate things at home. It’s the kind of thing you see and you might think, “That kid needs more discipline.” I wish to God that was the case. That would be easy. Instead, Wes came home from school defeated. Without a single mention of the call, he admitted to his Dad that, “OCD won today.”
We’re desperate to stay one step ahead of this OCD devil. We hadn’t been to Wes’ psychologist in a few weeks so we immediately scheduled an emergency visit. She did what only a psychologist specializing in OCD can and surfaced the challenges he was having. He calmly shared with her that he’s struggling all day with leaving assignments incomplete. And at night to top it off he’s seeing intrusive scary images he is unwilling to talk about or share any details of. OCD is after him both day and night. I guess I’d be pretty agitated too.
I feel way better. That’s what he said to me after going to Dr. Jennie. It gives credence to his struggles. He feels understood – not bad, not less-than. He needs the help. And, she gives him confidence he can do hard things. I’m so grateful to have a team to work with. It doesn’t just take a village…it takes a group of superstars who are bringing the best to the table to help our son.
We can do hard things. Through the ups and the downs. The steps forward and the stumbles backwards. We just have to keep looking forward.
“OCD is mean.” Those were the first words that came to mind for my son when I asked him how he would describe himself. My heart sunk. I have so much more work to do as this little boy’s mamma.
Battling the OCD flea has taken center stage in the first 7 years of my son’s life. The two years since his diagnosis have been filled with trips to therapy, psychiatrist visits, daily and sometimes multiple-time-a-day exposure therapies and ongoing cognitive behavioral coaching around specific daily behaviors.
We’ve reached a bittersweet point of acceptance with OCD. We have our son back. Yet, we’re armed and ready to strike at the next assault. One of those recently was checking for spiders. Yes. It’s normal for a kid to be creeped out at spiders. What’s NOT normal is waking up at 3:30 AM and refusing to fall back asleep out of fear and ransacking the house with the vacuum in one hand and with spider spray in the other, looking under rugs and re-visiting the same spots over and over again unnecessarily. I knew it was OCD when he paused on our way out of school to inspect a tidy and perfectly spider-free corner outside the school. He crouched down close to it and shared matter-of-factly that there were probably spiders there. He then looke to state that there were probably spiders there and pointed to a drain pipe to ask if I thought they came from there. That is NOT normal.
This time was different. After asking me the question about whether I thought they were coming out of the drain pipe I simply said, “That sounds like an OCD question,” – refusing to answer. I prayed he’d recognized it for what it was. His long term management of this means he needs to be able to identify OCD on his own and fight back on his own volition. Without skipping a beat he piped up in response. “Yeah, OCD REAAAALLLLLY wants to know that!” BINGO. Hallelujah, a sweet victory that melted my heart and put the best smile on my face. We can do it. HE can do it.
Maybe his identity will be in conquering hard things. Maybe it will be in the empathy he has developed or the sense of humor that helps make hard and awkward things more palatable. Whatever it is, I’m grateful to get the opportunity to with each victory give us space to focus on other things to nurture his identity – not just OCD.
“I can’t breathe.” Over and over again tonight my sweet son would say this as his chest rose dramatically up and down taking deep breaths every so often. And, nothing I could do would help. Not snuggles during a movie. Not a foot and back messages. Not books, distractions, crafts, deep breathing or grounding techniques.
The summer started off great. Wes was happy. No new concerns or compulsions. I even felt he didn’t need to keep taking the ADHD medicine he was on after skipping a week-end. He seemed to be calm, highly focused and happy. Until he wasn’t.
The OCD Flea has successfully regained some hard-won territory. It starts small. This year it started with heightened sensory issues. He’d been bitten by a few mosquitos and he began compulsively attending to them with salve repeatedly. Then, he pushed back on us for asking him to wear his life jacket. He hated the feeling of anything damp on his skin. That led to an outright refusal to wear swimshorts unless he was swimming. He’d request dry clothes almost immediately after getting in the water. He was desperate to feel ‘Just Right.’
This season peaked last night when in an almost manic state he argued with me that self-harm made him feel better. In desperation, he screamed into his pillow. “You just don’t understand! When I do it, it helps. It helped!” Yup, that’s the trick the OCD flea plays. If you do what I want you to do then you’ll feel ‘Just Right’…you’ll feel better. I gently, carefully shared that we can’t let the OCD Flea win. Hurting yourself is a recently designated “unacceptable” behavior. It results in lost privileges. The consequence feels so unfair to dole out to a child facing something so tough. Isn’t life so unfair already?
I did it anyway. And, today when my son got home from camp he had to miss out on going to the pool with his friends and playing with his favorite toys. He was sad, but he never questioned it. Instead, he looked absolutely drained and tired. I could feel his anxiety from a floor away. I set him up with an audiobook and crafts to make for one of his favorite people. He labored away making every detail just so. Did it help? Yes….no….maybe? I don’t know! He made beautiful work. He focused for a long time on creating his best creation.
The gasping for breath never stopped though. Eventually, he said he wanted to see one of his favorite people he hadn’t seen since school ended a month and a half ago – his blessing of a 1st grade teacher. And by the grace of God she was open to us dropping his gifts off and chatting. I never got in a car so fast in my life. It was 7PM and an hour from my son’s bedtime but I would have done anything to help him. We jumped in the car and drove 15 minutes away.
His breathing finally slowed when he saw her. She was so excited to see him, asking about his summer and commenting on how he was growing. It meant absolutely everything to him. She showed him around her new place and patiently made sure he could see their sweet cat. She talked openly with him about taking deep breaths and he shyly asked if she had any other ‘anxiety things’ she could show him.
“I had the best night ever,” were the first words out of my son’s mouth as we walked back to the car. And, I’m so grateful to have angels like her to help smooth our path.
“If you hadn’t have told me, I’d never have known.” This is how everyone feels when they meet my sweet, funny, clever son. So of course I find myself feeling silly as I go out of my way to proactively explain something that others largely see as undetectable. Obsessive Compulsive Dissorder is invisible. So, why make a big deal of it at all?
You see my son as a stereotypical boy. He’s full of energy. He wants to wrestle with his Dad. He doesn’t want to go to bed and dawdles to get his things together to get out the door before school. He loves to play on his Nintendo Switch, play with our puppy and run around the neighborhood with his friends.
From the time he turned 2 years old he was ‘hard.’ Shortly after his 2nd birthday I’d taken him solo on a trip to Canada. It was a rude awakening. I didn’t even recognize him. He punched at me on the plane, woke up multiple times each night asking to be taken home. He was inconsolable. His persistence to do nothing of what you were trying to get him to do was herculean. A year later when I put him in preschool for the first time, I received an almost daily incident report of egregious behaviors. One day, he was so triggered that he started throwing chairs and toys. They took pictures of the scene and left it intact so we could witness firsthand the gravity of it. Talk about the walk of shame! They might as well of made us wear a scarlet letter in and out of the building. Not surprisingly, I found a parenting flier selectively placed in his cubby for me to consider; offered by a local church. It was like a punch to the gut. I’d never seen that level of intensity at home.
Over the next couple of years, we continued to struggle with school. By the time he got to kindergarten we’d tried everything, including doing 20 weeks of a parent-child interaction therapy program that helped immensely but simply wasn’t enough. And the school was ill-equipped to effectively manage special needs. One day Wes came home and shared that he often went to a teacher. “But she’s not REALLY a teacher. She teaches kids how to be good.” Another punch in the gut. My son thinks he is a bad person. He kept hearing that message for so long I was terrified he’d actually start believing it.
During a follow-up therapy appointment, I remember asking in tears if Wes could be evaluated for OCD. They didn’t pursue a formal diagnosis and the therapist shared that she felt based on a simple questionnaire or two that he was just a ‘rigid’ child on the ‘bright path’. OCD is rarely diagnosed that young based on what I now understand (and I don’t fault anyone for this).
Adults don’t respond well to ‘rigid’ children. During a meeting with his first preschool teacher she sat with her arms crossed with an expression of utter dismay over finding his overreaction to hearing the toilet flush ridiculous and disruptive. Sensory sensitivity is part of the OCD experience for many people. His was so bad that a loud train horn once triggered a pure, blood-curdling trauma response. We didn’t do fireworks or use the blender. Public restrooms were a minefield. Even my own family wasn’t accepting of his rigidity. My stepdad felt by ruining a police lego station they had made together he’d learn that life isn’t fair. He simply needed to learn he can’t get his way all the time. If only it were that simple!
I know there absolutely could be things you see in my son that concern you or unnerve you. And, I’m confident those things are OCD. I also don’t want you to see those things and come to your own conclusions. I say this because at one point when were just past the diagnoses and just steps away from our first exposure therapy a friend vehemently stammered to me that she saw him PLAYING with a knife. “Jacqui, he was PLAYING WITH IT!!!,” she repeated to me as if I just wasn’t getting it and repeating it would help. She had walked in on him in my kitchen taking a plastic sheath on and off of a large chopping knife. She was so upset when he responded insistently that I let him play with knives (clearly NOT the case) and left the house without saying anything – terrified.
“Let me talk to Wesley about it,” the psychologist said after I shared the situation and asked for guidance. After a series of questions she was able to confirm with absolute certainty there was absolutely zero intention to harm or hurt. He has harm OCD and is terrified of something happening to me. To deal with the fear of dangerous things harming me he exercises compulsions because OCD tricks him into thinking if he does those compulsions nothing bad will happen. As part of his ‘Just Right’ OCD he needs to see things completely (I’m talking like every side of it up, down, sideways etc) so he was exercising a compulsion to see the full blade repeatedly. Two weeks later when we finally learned of the situation we immediately installed a child lock and designed exposure therapy that lasted months to help him work through it.
I don’t want you to jump to your own conclusions. That’s the reason I talk about OCD. And, Wes doesn’t want you to either. I asked him this week if he wanted me to share with the summer school program about OCD and he quickly responded YES absolutely. He feels validated and understood, something everyone deserves. When he gets stuck it’s helpful to have a village of encouraging people ready to empathize and understand instead of judge.
I am so thankful for those people who have made Wesley feel seen and heard – his amazing team at school, us, his psychologist, and our friends who support him every day on his journey to battle the ‘OCD Flea’.
When the school’s number flashes on my phone screen, I can’t help but feel that familiar tightness in my chest. Five years of conditioning don’t fade easily. My mind automatically travels back to the day when my four-year-old son, in a burst of frustration, pulled out his friend’s cochlear implant. I can still feel the…
Third grade has been uniquely challenging for Wesley. His severe OCD and ADHD make it difficult to learn and operate the way a kiddo in 3rd grade is expected to. Repeatedly through the year he has shared that he wishes he could do his life over again. This is why I’m really struggling to stomach…
“Wes had an incident today in Art class.” My heart instantly dropped and my chest tightened as I listened to the principal explain why Wes was in her office. I held my breath as I waited for the worst. Did he throw chairs? Rip something apart? Flashbacks of earlier years still occupy a ridiculously too…
There will be people on Wes’ journey that watch out for him. It doesn’t always have to be you. Those words couldn’t be more true.
I’m starting to see all the different things that could make friendships challenging for Wes. He simply doesn’t want to do the things other kids want to do at 6 years old. For Wes, the anxiety is worse than punishments, ultimatums and/or the excitement of doing something fun. For instance, I’m trying to adopt Christmas traditions that we loved growing up. What’s the most obvious? Christmas lights. “Wes, let’s get some hot chocolate ready and hit the road to see some cool Christmas lights!” “No, maybe later.” Hard pass. Seriously?! .”..but….HOT CHOCOLATE!” Still no. After a comprehensive debate and full-on bribery using every ounce of creativity, I finally convinced him.
“Want to play outside?” Wes’ friend pleaded. His response? You guessed it. No thanks. However, this particular friend is a little different than all the rest. One day out of the blue Wes had shared with him that he has OCD. From the other room, I leaned forward to pick up more of the conversation. He explained how sometimes his brain gets stuck. And things have to be just right all the time. While I was proud of him for so confidently sharing this I also worried about him getting made fun of for being different. Kids can be mean.
Wow is this kid proving me wrong. Yes, kids can be mean. They can also empathize and protect in ways I never thought possible. Not too long after Wes shared his challenges with his buddy a cool thing happened. They were debating what to watch on TV and Wes was stuck on a particular type of show that he always watches. “Wes, now’s your chance! You can fight OCD! You don’t HAVE to watch that, you can watch something different!” This epiphany came from the purest and most genuine caring places. And, Wes flipped the channel. On another occasion, this same little buddy pleaded for Wes to come play outside. “I know it’s harder for you, Wes.” Wow, just wow. His buddy was patient yet persistent and sure enough he finally broke down in agreement and had fun.
Even adults find it hard to stand up for what they believe in and for other people. And, Wes has a friend that’s strong enough to do just that. The other day on the playground, Wes was lazing around in a swing that’s shaped like a little saucer. Some bigger kids started to push it around and Wes didn’t want to be pushed around. His buddy picked up on what was happening, seeing his friend in distress. Rather than join in jokingly or walk away his little buddy stood up for Wes and asked them to stop. WOW.
There’s a choice we make when people are different than us. We can protect and watch out for them or ostracize them. Appreciate their differences or make them feel like they don’t belong. Empathize or judge. And, I’m so incredibly inspired by Wes’ little buddy; that such a small person can think so BIG.
My friend was right. There ARE guardian angels that will watch out for him. I don’t have to be there every minute.
No, nope, not today, we’re not going to do that, honey please, come on….AAARGH! I get it OCD! You don’t like to try new things, you don’t like to travel and you don’t care what I think.
I was nervous to go to Canada with Wesley again. When he was just a little over two years old we had attempted a trip that tripped every single OCD trigger imaginable. He was so angry on the plane ride there that he hit me for the first time, upset that dad didn’t come with us. When we arrived at our hotel, he immediately wanted to leave. The next morning, flailing around he ended up spilling an entire coffee on me before a business meeting and I wasn’t sure whether to laugh or cry.
It’s a miracle I didn’t have to be committed on that trip. Just two days into it I woke up to his tiny little face hovering directly over mine asking me assertively if he could go home. I responded by buying any toy with wheels I could find in my small hometown to no avail. Finally, around five days later we left Canada in grand fashion. After fighting to hold my passports out of his reach and corral the luggage we finally made it to security. I asked as politely as possible if he could just keep his blanky in his hand and was met with a firm NO… and another fit. Somewhere in that crazy I also accidentally bonked his head with the security bin. Of course, that propelled the temper tantrum that followed. Having to get from gave 1 to, you guessed it, gate #88 I ended up having to strap him into the umbrella stroller which prompted an epic scene where he arched his back against the stroller as if he was hulking out and screamed at the top of his lungs the entire way to the gate.
Travel is traumatic for Just Right OCD. Travel is all about experiencing new things. Schedules are unpredictable. New people are involved. New physical environments. And all that new stuff royally peeves off OCD as the OCD Flea fights back about every single little thing to attempt to regain control. It ends up coming out as a kid that seems irritable, impossible to please, disagreeable, not prone to listening and generally spoiled.
I wish it were that simple, that he was just spoiled and by just being more strict it would be better. Instead I know that the OCD Flea is the most amazingly sneaky and tricky thing in our lives. He makes Wes ask reassurance questions repeatedly to make himself feel better. OCD Flea HAS to know the time, all the time. OCD Flea all of sudden also has to know how many months until his birthday and despite answering he would ask again and again and again the same questions. Wesley doesn’t know when OCD Flea may pop up so once we settled at one place he battled for the first couple days about going to my dad’s house to spend the time. He didn’t want to leave my aunt’s. He was anxious and irritable when we were out later with another aunt. She had handed him a bag of gifts and got a deadpan response with a long face and barely a smile. I felt beyond guilty for his reaction and wished I could explain it better.
It was as if OCD Flea was causing his brain to short circuit every few hours. He started constantly moving his head and shoulders repeatedly in the same way, a sort of tick-like motion I’d noticed only occasionally in the past. It looks like the collar on his shirt is bothering him. He started switching lights on and off throughout the house repeatedly and at one point lifted some small little metal pieces on each stair rail up and down repeatedly until I intervened. One night he could not sleep despite every attempt and effort finally crashing at midnight. It’s like he didn’t want to be in his own skin. And no amount of gifts, ice cream or time spent would do the trick. It’s exhausting.
I can’t say I conquered OCD Flea on this trip. I feel like OCD Flea schooled us. Yet, maybe not as much as the very first trip there. There were more happy moments than before. We were more equipped.
Last time I wasn’t even keeping my head above the quicksand. At least now we’re sinking a little less deeply into it.
“So, there’s hope,” my friend joked, glancing between my six-year-old son calmly playing by himself and her sweet little two-year-old boy running around the play place wreaking havoc (as he should!). YES. In Wesley’s words, I agree ‘ten thousand.’
We’d met at a little cafe that had opened just a few days prior called ‘Inspired Play Cafe.’ I learned later that the woman working the counter, Bianca, had opened the cafe literally for me and my girlfriend, so to speak. She designed it to give moms like us a place to get yummy food and coffee while entertaining our kids with stuff that promotes creative thinking and exploration. Score! Yes, please, sign me up!
That little cafe experience caught me completely off-guard. I enjoyed the yummy food and fun environment. I enjoyed the coffee with whip cream on top. What I didn’t expect was to see the breakthrough my son had that day as I watched him in awe, mesmerized. He invented one thing after another in rapid-fire succession. Sitting at the cafe’s craft table for several hours he built stick creatures; block mansions and towers; houses on stilts; you name it, he built it. So unlike his typical reaction to places like this where he may push a few things around then ask to go home. His psychologist shared that it’s often easier to opt-out of things and stay home instead of taking a risk OCD will show up and bother him. I was the one inspired.
The OCD Flea only reared his ugly head once when Bianca brought over a magnetized building set just for him. He glanced quickly at it. Then he ignored her attempts to teach him what to do with it and relocated to the opposite side of the table further away from us. Confused and feeling guilty about Wesley’s reaction, I took one of the tiny cylinder magnetic pieces and held it up to Wesley. “How much does OCD not like this on a scale from zero to ten?” “Zero.” OK. Still puzzled. “What about this one?” I asked, holding up a shiny silver magnetic sphere. Immediate rejection. “OCD REALLY doesn’t like that.” There’s something about circles! Ack. Sitting at the Inspired Cafe craft table is definitely not the time for a new exposure therapy exercise.
Wesley was able to move on and build a series of other great things with ease after I returned the magnetic set. Earlier in the week, we had started him on a low dose of an ADHD medicine to complement his Prozac. The doctors have been hesitant to do it out of concern that stimulants could exacerbate his OCD symptoms which is the tougher opponent for us. The advice to hold off had been firm until a recent counting and math compulsion surfaced. I don’t know to expect longer-term with this combination. However, what I DO know with absolute certainty however is that I felt like I won a little more of my son back sitting there at Inspired Play Cafe.
There is most definitely hope. It might not mean it will ‘get easier,’ but there IS hope.
“He’s still awake. I don’t know what’s going on with him. He’s all over the place.” My husband looked at me with a helpless, concerned look in his eyes. Tag, you’re it. I need help. You have to take this over for me.
I still don’t know if this manic-type OCD episode was my fault. After a long day in the office, I jetted over to a friend’s place to catch up and unwind. It was so nice to spend the time that I decided to stay through Wes’ bedtime. “Good night honey, I’ll see you in the morning,” I said when I called him to say good-night over the phone. He was so sweet on the phone and seemed A-OK.
He wasn’t OK. By the time I got home and walked into his room, he was in a fetal position in bed and writhing around as if in pain. It looked like he couldn’t stand to even be in his own skin. He avoided my touch and ignored my questions about what was making OCD mad. Not having a clue what to do, I suggested that we do some exposures in my office (even though it was already almost 2 hours past his bedtime!). He perked up at the idea and almost ran to my office. Inside the room, I pleaded for him to focus on me so I could talk to him. He ignored me as he ping-ponged from one object to another in my office touching and exploring things. “Sweetheart. Sweetheart, hey sweetheart. Come here, sit down.”
Finally, he settled into my wingback chair and brought his legs to his chest. Grimacing and moaning as if in pain he begged, “Mom it’s just SO hard. He (the OCD flea) wants to do math problems. He wants to do math problems. It’s so hard. Just let him do it. It’s so haaaaaard.” “Ok, let’s do it! We can do some of them wrong (to beat OCD)! Maybe one right then two wrong?” “I want to do it in a math book. It’s on the table. But mamma, can we get them correct? I just want them to be correct. It’s SO HAAARD. Just let them be correct!” he asked, wincing.
He raced to retrieve the math book and sat down with it in the chair. His body relaxed. He made eye contact. His big brown eyes sparkled at me. “Mom, four times four is sixteen.” It’s as if he’d forgotten what had just happened. And I felt guilty. Giving OCD what it wants is like giving an addict their choice of drug. The drug in this scenario was clearly the multiplication book. So, I encouraged him to write things incorrectly in the book. And finally, I was able to convince him to go back to his bedroom to try sleeping again.
At 12PM I laid in bed relieved that I finally got Wes to bed after another hour of coaxing. I was exhausted. And I was wide awake. The week had felt like a half marathon with only one day to go. Then, when I got home it was like someone had pulled me off course a mile before the finish and thrown me onto the blocks for a 400-meter sprint just as the gun was going off. No ‘ready, set’. Just GO. My chest tightened just thinking about how hard it was and how long it takes just to get an appointment to increase his Prozac; how OCD will impact his future; how hard it is to address this recent new trigger of counting and solving math problems on repeat in his head; how I can’t imagine having to get on the road for business travel again and leave my husband and son to figure these moments out on their own; how it’s so unfair. And how we’re so alone in this. No one understands it.
No one understands it because we’re in Holland and most everyone else is in Italy. It’s the best analogy for how I feel. I came across it in this book: Freeing Your Child from Obsessive-Compulsive Disorder. I planned this amazing trip to Italy when I finally got pregnant through IVF after almost five years of trying. I bought the tickets to Rome. I bought all the clothes to wear to tour the Coliseum and explore the Italian Riviera. I planned all the sights to see and booked all the hotels. I brushed up on some basic Italian. I got on the plane.
Instead of landing in Rome, I ended up in Holland. Huh? “Um…excuse me? I’m supposed to meet up with my friends in Rome. We have plans!” This isn’t where I’m supposed to be. I don’t have any maps or plans for Holland. I don’t know the language and am completely ill-prepared. I have to get off the plane. I reluctantly get off and try to rebook for Italy.
No such luck sister. As it turns out, we’re supposed to be Dutch. We’re learning the language. We’re trying to stay connected to friends back home and in Italy. While well-intended, they’re not really interested in really learning Dutch culture. They don’t have to. We try to visit when we can but we wear funny clothes and have funny traditions they might not understand. However, Holland is our ‘Just right’ destination.
Defeating the OCD Flea 