ocdfleafighter

Raising a white flag

October 25, 2021 ocdfleafighter

Have a little mercy. That’s what I want to say to the OCD Flea. Is there not at least ONE SINGLE THING?!…One single moment where you don’t have to argue, distract and fight for my son’s attention?!?!

The day started off with a win. For the first time in his life, Wesley slept past 8AM. It makes sense now. OCD is a type of anxiety disorder. Once his brain started to fully process stories and full thoughts his sleep started to get increasingly more elusive. At one point, right before diagnosis, he would wake up at various intervals through the night and be ready to start each day at 4AM. He would come in to check and see if we were still in the house. Checking. Checking. Checking again. A classic “Just Right” OCD compulsion to seek assurance and make the uncomfortable ‘not just right’ feeling go away. And so, when he was still asleep minutes before our typical school departure time I let him sleep.

Nothing was right the rest of the day. The plain blue winter coat that he claimed no longer fit him and loved the year prior is no longer wearable. The tag on the inside of a pair of shorts he wore religiously almost once a week immediately needed to be cut out. The sweet little cardboard box monster he had labored over at school wasn’t just right. The nose was too long so he had to rip it off. He had to tinker and tinker and adjust that little box monster lovingly until it felt just right. He would talk sweetly to it as if it was a real infant. We went around the house gathering a little basket for its bassinet and one of his baby blankets. At one point he felt it needed something to protect him from the floor so I offered to glue cotton balls on the bottom for little feet. Happily, he sat it back in the bassinet and eventually was able to set it aside for dinner.

The OCD Flea was right there at dinner too. He jolted up in his seat and with wide eyes claimed he’d wet himself. Paul and I knowingly looked at each other with a look that comes from months of ‘checking’ and confirming the validity of that exact claim… and trying to rationalize with the OCD Flea that it’s all a lie; a trick forcing my son to pick sides. It’s us or the OCD Flea. This time our pleading seemed to work. Then he’d joke back and forth teasing us lovingly about whether he did or not. Then he admitted, he tried to but couldn’t find any extra undergarments. Sigh.

Surely the OCD Flea would give us a break for bedtime? NO. After stories had been read, that OCD Flea came back with a vengeance. He insisted on getting the box monster. He pretended to tickle it’s the tummy. He pretended that his monster tail stung me. We laughed. Then, those sweet little six-year-old boy lips turned down and those big brown eyes looked at me sadly. We had glued those little cotton balls on the wrong side and now his little monster baby’s smile was a frown. He was heartbroken. And, I tried to convince him that we can love things just the way they are they don’t have to be just right. After trying my best not to fix it and letting my son sit with this disappointment I did what I’m sure I’m not supposed to do – I helped him fix it.

Now, our little monster baby has a new face. After pondering for a minute together about what to do, I suggested he put some fresh new paper on his face right now. And he asked if I had colored paper. “You bet I do, honey.” I dug up the best piece of red paper I could find and glued that fresh clean paper over the sad face of his NOT just right monster baby. Then, he drew the sweetest little sleepy face complete with little curled eyelashes.

Sometimes I need it to be just right for him.

Peace & Victory

Little boy

October 19, 2021October 19, 2021 ocdfleafighter

“Although you walk alone I’m not far behind.”

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

Brain Gets Stuck

October 18, 2021 ocdfleafighter

October 18, 2021

We can do this. We’re doing it. These are the words that I try to find in those tough moments. And Saturday night was one of those tough moments. The kind that weighs on my chest so heavily. Makes the world stop. The kind that feel so unfair on the heels of a great day…or a great week of fighting the OCD Flea.

Wes and I had the best possible day on Saturday. At the beginning of the day we went to Costco. Before we went in I paused, kneeled down next to him and shared that, “Ok, we know the OCD flea doesn’t like shopping. Are you ready to go in the store and fight him?” He was ready. It was go-time. And, I asked that he tell me anytime the OCD Flea was trying to bother him.

It was the best shopping experience I have EVER had with Wes. It was as if acknowledging how he shows up when we’re in stores immediately gave him more confidence to overcome the discomfort. He cracked jokes. He was patient. He was helpful. Out of the corner of his eye at one point he saw a bottle of my probiotics and called my attention to it, sharing that I was out of it so needed to pick up a bottle. He unloaded the cart. He was AWESOME. He was himself.

Shopping trip #2 of the day was the same. A few hours after getting home from Costco, he shared that he’d like to take me up on my offer to go to Target to get some Halloween decorations and supplies for Halloween goodie bags for the little kiddos on our street. Score! I LOVE TARGET. He picked out probably 20 little holiday knick-nacks like fake spiders and Halloween pencils. Then, he came across some candy eye-balls. He insisted we had to get them. I questioned it. When he was around four years old he’d gone to a children’s museum and seen a skeleton whose image was stuck in his head for at least a year. After seeing it, he had told horrific stories of skeletons incessantly and could barely sleep.

We are so far past that. Or so I want to believe. When we got home his urgency to unpack everything to see everything completely and line things up was difficult to navigate. At last we came to the eyeballs and we noticed he HAD to hold them. He needed to put them in his room. They were clearly an OCD trigger and to feel just right he HAD to have them, hold them. He went into that zoned out state I saw at the store and when we tried to take them away he started screaming as if we were trying to hurt him. We talked to him calmly and sweetly saying things like, “OCD really needs these to feel better” and, “We won’t let him bully you.” I grabbed the jar and hid them in the garage.

I watched my awesome sweet 6 year old writhing and screaming about those candy eyeballs for what felt like an hour. My husband held him in his arms in his rocking chair in his room until finally he was able to calm down. Once he was calm he shared that in some Nintendo game there is a cartoon whose eyes pop far out of their head in surprise. Something about them isn’t just right for him. It’s a trigger. And he has to look at them a certain way fully. Like bodies, like sharp objects, like everything in the world.

Thinking of that moment I remember the feeling of sadness, helplessness. There was a new feeling though. A sense of calmness and control that came from knowing that my only job was to love him through it. It wasn’t to fix it. It wasn’t full of doubt about being a bad parent. It wasn’t guilt. It was empathy and understanding. I can see these moments now for what they are, who they are: The OCD Flea.

Note to self: Never buy candy eyeballs again.

Peace & Victory

Trojan Horses

October 14, 2021 ocdfleafighter

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.

Peace & Victory

Come back to me

October 10, 2021 ocdfleafighter

Today in the store I felt like I had lost my son. He was there right in front of me. Yet, it was as if I didn’t exist to him in that moment. I pleaded. “Wesley, listen to me honey. You don’t have to look at everything. You don’t have to touch everything. OCD Flea is bullying you isn’t he?”

After a few hours at a pumpkin patch I brought Wesley to a home decor store. I wanted to stop in for a bit and browse around for a desk for Paul’s office. Painted Sofa is the kind of store that is a vintage shopper’s paradise: multiple floors, merchandise stocked high and all the way to the lighting on the ceiling for sale. There are millions of little trinkets. And it hit me that shopping is torture for my son. Not because he’s a boy and boys hate shopping but because he has Just Right OCD that manifests most deeply as fear and discomfort at not being able to see and experience things unless he can experience and see them top down and side to side – completely.

I wanted him to have some fun at the store too so suggested he pick out 4 Halloween decorations. He immediately started jetting from one table to the next touching, inspecting with a growing feverishness. I could barely keep my eye on him. I tried my best to keep him with me and on track with me as I went through the store. “Honey, let’s not pick up glass things. Honey, stay within my eye-sight, OK? Honey, Yes that’s the cutest. Yes, it’s very cute. Yes, I see it. Yup, I see that. Honey, OK now is mommy’s time to lead. We’re here to look for a desk for dad. Let’s find a desk for dad.” I couldn’t reach him. He was completely zoned out processing everything in sight.

The compulsion to see and inspect and touch every single holiday decor piece grew stronger with every step. At one point I sat down on a chair in a quiet corner and pleaded with him to come to me, to listen so we could come up with a plan to beat OCD for the rest of the trip. He could not. He simply couldn’t. The compulsions were too strong. And that’s when it really sunk in. THIS is what his preschool teachers were referencing having seen in him in moments when he’d destroy the kitchen set, throw chairs or whatever egregious preschool offense I was emailed and called about…that was recorded as poor behavior and misconduct. This experience was a terrible OCD trigger for him. The OCD Flea had taken over and was torturing my son.

Today I was able to look back at Wesley’s behavior on shopping trips and see it for what it REALLY was – a neurological condition. And as I searched online tonight it didn’t take long to come across an article mentioning this ‘spacing out‘ phenomenon that can often occur during an OCD compulsion.

He wanted to fight him but he was simply too tired after a few hours in the sun. And, the Painted Sofa was far too much for him. All he wanted to do was to go home. And now I get it. And I hate myself for taking him there.

The good news is that now I’ve spotted you, OCD Flea. You might be able to hide from Wesley but you can’t hide from me. We will get you. And I have these two holiday decorations to remind me.

Peace & Victory

Lotus Flowers

September 26, 2021October 14, 2021 ocdfleafighter

I’ll never look at a lotus flower the same way again after this week. I was looking for an image that I could use to symbolize what we’re going through with Wes. It was silly really but I wanted to scout out an image for the top of the popsocket that had personal meaning to me.

I flagged an image (above) that I liked on the Popsocket website that looked pretty as a potential option to buy. Then, I decided at that moment to shift gears and search for something with more personal meaning. I started searching using terms like ‘OCD awareness’ and ‘mental health awareness’ online. One article had a list of OCD-related tattoos other OCD-sufferers had gotten.

Several tattoos down the list of ‘top picks,’ I ran across an image of a lotus flower with it’s big, beautiful, ballooning leaves. The text below the image was a quote from the girl who had the tattoo. It shared how she picked it because the lotus flower grows in mud. For her, it symbolized how the most beautiful things can come from the most ugly and unexpected situations.

That lotus flower tattoo story struck a deep chord for me. And not long after running across it, it struck me that I recognized those billowing leaves from earlier in my search. I flipped back to the first tab in my search bar and realized that the ‘pretty’ Popsocket I’d first landed on was really just a pattern of lotus flowers!!! I guess it was finding me more than I was finding that lotus flower symbol.

Our journey has been muddy. I feel like I’m trudging through wet concrete more so than mud some days and just trying to keep taking the next step because the mud is so thick. Yet, some days I realize we have some better boots, maybe all the rain has loosened the steps and each one gets just a tiny bit easier.

Last night was muddy but maybe a little less so. When I put him to bed he couldn’t relax. He was trance-like as he insisted on having to turn over repeatedly to look at the clock. As he did so he would announce the time. “It’s 9:05…9:06…I bet it’s 9:10…” I said, “OCD is really bulling you. He really needs to know the time. Let’s not let him bully you. Do you need me to move the clock?” I suggested we tackle it in a therapy session. I held my breath for his pushback. There was none. The mud got a little looser. He even corrected me that we should do an exposure therapy on not looking at the clock but on not SAYING the time out loud. Some more rain to loosen the mud.

Update: 10/14/21 – Sometimes you get to see a big rainbow after a storm. Yesterday, Wes looked at that intricate image of the lotus flowers and pointing to each of the flowers one at a time said, “Mom! This one is you. This one is dad. This one is me. And, this one is King. And this in the middle is Kirby (our puppy who passed away this year).” I never mentioned a thing to him about the meaning this image had for me.

Peace & Victory

Little houses

September 21, 2021 ocdfleafighter

From the time Wes was old enough to draw I’ve watched him draw house after house after house. He started drawing them maybe around the time he was three. Each one would look largely the same with a few small differences. He’d draw the square or rectangle base, a triangle roof and a window with a single cross through it to make four panes. And, one plain door with a dot for a door-handle.

After that first burst of drawing creativity and ownership it’s as if he got stuck. Permanently stuck. He couldn’t draw a single thing more. It seemed to me he simply lost interest and didn’t want to. Maybe every so often he’d venture outside his comfort zone of those small little houses but for the most part he would turn to that same image each time his pen hit paper and he was asked to draw something. This has been like so many things. Rapid progress then groundhogs day. Whatever it is freezes in time. His brain gets stuck.

Last night in Exposure Response Therapy (ERP) I was able to see behind one of those doors of those little houses and into Wes’ mind just for a moment. We were planning to focus the session on exposing him to the discomfort of partially completing something – a spelling test or in this case a drawing.

Out came the house. She asked him to draw it just the way he typically draws it first. He quickly sketched it on the paper sloppily looking annoyed and disgusted with the whole activity. “OCD really doesn’t want us to do this activity does he,” the doctor would say to Wes. He seemed only to get more annoyed as he messed up the paper and drew all sorts of crazy scribbles. She coaxed him into the activity over and over again saying things like, “We do hard work in here. I understand that OCD doesn’t want to be here in this office.” He sarcastically snapped back under his breath that it’s not an office it’s a building or something like that. She was patient. She needed to be.

“Wesley, go ahead and take another paper and do your best to draw a good house. The plan this time will be to leave something unfinished. Can you do that?” He barely agreed but continued anyways. It’s as if you can see the struggle between OCD Flea and Wesley there in front of you although Wes is only a small sliver. “What part can we leave off the house?” “The door,” he responded. “Yes, you can even leave the door knob if you want but leave the square door off.”

Wes started to draw every version of the house except his ‘normal’ one. He drew a circle house with no door…then a square house with a round door. “OCD really doesn’t like this activity. We want to make him mad. How mad is he right now?” “Nine thousand….I mean 90.” He’d waffle back and forth on high numbers he can recite then eventually the doctor would ask what number through 10 and he’d hold up 10 fingers. She’d ask him to stare at the pictures where he’d finally drawn a proper house with no door. Then, after waiting she’d have him draw another one and stare at it again.

Every so often I’d see him reach for the paper and put it in his lap so he could stare at that thing front and center, confronting it. Confronting OCD Flea. He did it. He can do it. And, it’s a far more challenging opponent than I can fully grasp.

Peace & Victory

I’m sorry to say this

September 8, 2021 ocdfleafighter

September 8, 2021. – My favorite moments as a mamma are snuggled next to my six-year old son after teeth are brushed and stories are read. Every so often at this most precious time of day he’ll share his life with me. He’ll share secrets, silly jokes and pranks, stories… and sometimes fears and insecurities that have been expertly bottled up and buried deep inside. Tonight, the latter left me feeling broken and defeated by the demon we’re always fighting – the OCD Flea.

As I lay snuggling beside my son he looked at me and nonchalantly shared, “I’m sorry to say this, but I’d like to be an army guy.” How unusual, I thought. It wasn’t like him at all. Then, reflecting I shared that I’d support whatever he chose to do yet I didn’t love the idea of him ever getting hurt. I asked him what made him decide that might be something he’d like to do. In defense, he declared, “Well, I’d save the world.” A noble cause indeed. Who could argue!

After that peculiar proclamation he admitted out of the blue that he just doesn’t want to fight OCD anymore. He sighed and shared ‘I’m bored all the time. I just want to let OCD win.” Knowing the importance of the conversation I put our little nipping yipping puppy in his kennel and came back to his bedside. He sighed again and shared that he hates having O.C.D. Then, he said something that hit me like a two by four to the chest. “I’d walk right up to the other army guy and I’d SHOOT HIM IN THE FACE. Then, he’d shoot me STRAIGHT BACK in the face. And, I’d be dead. I wouldn’t have to deal with OCD anymore.

I knew this was a moment to strengthen that bond with my son. To be there for him even though I can’t take his burden from him. Thanks to my latest binge-learning from the Happy Child Parenting app, I listened as intently as I could with no judgement when all I wanted to say was “You’re so wrong, don’t give up. This is silly, it’s all going to be OK. Not a big deal.” Instead I dug up the best emotional labels I could for the situation to try to name how he was feeling. You must feel so bullied? Yes. So exhausted from fighting OCD Flea all day. Yes. Frustrated and helpless. Yes. He rolled over to me eventually. After I hugged him and kissed his face he fell to sleep as I whispered that we will not let OCD win, I won’t let him win and he doesn’t have to fight him alone. I was sorry he had to deal with OCD Flea and these intrusive thoughts.

There are dozens of things I could have said. Nothing feels like it could have been enough for that moment. That’s my own exposure therapy exercise. Overcoming discomfort that I will never be able to fix it. Overcoming the fear that at some moment life won’t be worth living. Yet, he’s just beginning.

Victory & Peace

-JM