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.
“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.
These words brought tears to my eyes when I heard them from the sweetest voice of Hannah Mowery. This OCD boy-mamma is pretty special. I ran into a post she had on an OCD mom’s Facebook group and it was as if she wrote my very own song for me, putting into words things that are so incredibly hard to explain.
She agreed to share with me a little about her story and the recording of her song, ‘Little Boy’ that I love so dearly and keep listening to on repeat. Each story makes me feel less lonely on our own journey. And we can all use a little opportunity here and there to lift each other up some.
Hannah, you’re a conqueror!
A little about Hannah’s journey:
My youngest son, Jude, was diagnosed last October with OCD and severe anxiety. I broke down and took him to a therapist when I had that “mom gut” feeling that something more was going on under the surface of my sweet baby’s mind. He battles several versions of OCD, the biggest one being “scrupulosity OCD” or the “moral OCD”, as well as intrusive thoughts. He is a “checker” which his anxiety exacerbates this. We have learned a LOT in one year of therapy. We love our therapist and where Jude receives support and good counsel.
It has not been easy. There are days where I want to scream and run away from my home. Some days are up, and some are down (like I say in the song!) and I try to take the wins where we get them. The hardest part is not being able to “fix” my boy when he is hurting and tormented. Teaching him to sit with the uncomfortable has been a learning curve for not just him, but for us as his parents, as well. We never want our children to hurt!
I wrote this song in a low moment last April. I felt like a worn out soldier that knew I would have to go into war again, even though I had fought the night before, and the night before, and the night before that. I wanted to wave a flag of surrender and say I can’t do it anymore. But somehow, as mothers, we get back up and do it again. And even on our worst days of yelling and tears, we go and kiss our baby’s at night and PRAY so hard that tomorrow will be a little easier, or we will somehow be a little stronger. –Hannah
It’s not fair. Fighting the Just Right OCD flea feels like a never-ending game of whack-a-mole where the stakes are my son’s happiness, acceptance, safety and future.
On Tuesday after Wes got home I noticed he was acting almost manic. He couldn’t barely look at me and when he did he was so alive it was if he was electrically charged. After his bath he puffed his chest out, dug his feet in the floor and stated as if announcing the start of a show at the theater that he wasn’t going to watch TV. Instead, he wanted to do exposures. He started calling OCD flea names and saying he was going to beat him. He ran into my office and started fidgeting around. He asked me immediately to set the timer and he was going to stare at the drawers in my desk for 59 minutes or something ridiculous like that.
His eyes darted around. Then, eventually he’d settle on the desk drawers with an intensity that exceeded any attempt at exposure therapy I’d seen from him. Drawers are a trigger, OCD screams at him to the point that he’s so uncomfortable and has to address the compulsion with such intensity that nothing else matters. Nothing.
Then I realized what I had done. Paul typically gives Wes his medication each morning. That morning he’d left early. And I forgot it.
After staring at drawers I convinced him to switch to something else which he decided was drawing pictures of the OCD Flea. He raced to my shelf and grabbed the entire stack of papers and started fidgeting through my drawer for a pencil. He had to find the ‘just right’ writing utencil. I coaxed and urged him to settle on one. Then, he started to draw this picture of OCD Flea in jail. He carefully drew bars on it and drew a picture of another creature outside of the jail cell at the ready to torture OCD flea.
It’s part of therapy to villainize OCD. Call him names. He’s a bully after all. So, I thought it was actually a good thing and part of his healing to see him drawing these pictures. He drew another one. It looked the same yet a little different. Then another one, again slightly different. Finally I had to convince him to stop. He wanted to wake up early the next day to do exposures and draw pictures of OCD flea. It was like a broken record. He was stuck. And, I felt terrible. On top of it, in those moments getting him to sleep and staying asleep can be almost impossible. We prepared for a very long night with no sleep.
A few days after this incident we were with his child psychologist for an exposure therapy session. I shared some of the recent challenges and she shared that I need to recognize that repeated drawing as another compulsion. He will not be allowed to draw that picture anymore. The picture. Another place OCD is showing up. Ugh.
The OCD Flea is everywhere. It bullies him on what he can put on in the morning, how the clothes need to fall on his body. It bullies him to ask the time repeatedly even when the answer has already been given repeatedly. On what breakfast foods he should eat. When he should eat. How things need to sit on the table. Responses of things I need to say when certain things happen. How things need to be picked up. How school worksheets need to be completed. How he needs to touch and look at certain things that he worries about on repeat in a certain way. Reading. Writing. Every. Single. Thing.
The OCD Flea is our Trojan Horse. It sneaks into our lives in some benign way, sometimes unbeknownst to us. It seeks to destroy our joy, our progress. And, slowly we’re building a taller, stronger gate to protect us, protect him.
His psychologist shared that he was severe OCD when we started ERP. Now, moderate. Now, we have walls. We’ll keep going, keep building and keep watching out for those trojan horses that sneak past.
Defeating the OCD Flea 