Passionate About Fort Worth
and the Moms Who Live Here

The Hidden War :: Facing School with Pediatric OCD

OCD Text

It’s 5:01 a.m. on Monday morning as I blink my son’s face into focus, trying to pull myself into the present fast enough to catch the rest of his sentence. It’s still middle-of-the-night dark in my bedroom, and he’s dressed from head to toe in police gear, rapid firing desperate pleas to find his badge that says “FBI” instead of “Special Agent.” I motion for silence as I try to slip out from under the three year old resting squarely on my chest. Pushing the hair out of my face, I step into the bright hallway and turn my attention to the diatribe already well underway.  

I don’t have to pay much attention because it’s the same conversation we had last night before bed, and the same one that we will have again in an hour.

Obsession

He needs his badge. He can’t find his badge. Yes, that one looks just like it, but he needs the newer one. No, he can’t just use that one. That one is WRONG. He must have the right one. He will make another one if he can’t find it right now.  

There is only one page left of the labels that he prints his badge designs on. Do I have more somewhere? When will I order more? Can I turn on the laminator?  

Yes, he already looked in the three drawers downstairs where I keep the badges. No, he didn’t look upstairs because he can’t go up there by himself once he’s down here. Yes, it’s early, but he can’t go back to sleep and he needs his badge right this very moment. His eyes are wild and unblinking as his fear mounts. Color is high on his cheeks, and he’s flapping his hands, desperate to put eyes on what he seeks.

Compulsion  

Badges badges badges badges. They are everything. Common sense with a side of therapy tells us that he is obsessed with role playing games because he is not comfortable in his own skin. He must pretend to be someone successful, strong, and brave. He designs their badges to keep the panic at bay.  

In three hours, this little boy will be sitting in his third grade classroom. Behind his impossibly long eyelashes and sweet smile, he will be at war.

OCD and Generalized Anxiety are the evil monsters that live inside my nine year old. He doesn’t wear his disorders on the outside, but they lurk in every crevice and shadow of his brain, ready to wrap their sinister ideas into all of his thoughts. We are doing everything we can to help, but this battle is epic, and the demons don’t play to lose.

Teaching Teachers

With each passing year, my respect and admiration for teachers exponentially increases. They are the heroes tasked with teaching all the children. Regardless of their monsters.  

I can’t package and distribute my mother’s knowledge about this precious boy, though I would give anything to do so. Instead, I will sit twice a year in the cheerful front office of the school and wait for his 504 meeting to begin — my heart thumping against my chest while I try to act normal and smile when spoken to.  

This is the meeting where I will desperately try to explain my son’s illness to administrators, counselors, and teachers, and set up the plan to help him succeed. I will chew at the inside of my cheek while my brain trips over the things I want them to know — the triggers, pitfalls, fears, obsessions, compulsions, things that help, and things that don’t. The battles we’ve lost, moments we’ve won, doctors we’ve seen, hospitals he’s stayed in, therapists that didn’t help, and what his facial expressions mean. I will sit in the meeting and spend the entire half hour fighting the urge to stand on the table and shout, “Please don’t rush me! This is IMPORTANT! He doesn’t look sick, and he can fly under your radar, and I need you to UNDERSTAND that we can lose him!!!”  

The fear that someone will leave him stranded in his darkness follows me around like a villain lurking in the shadows.      

It’s a daunting task to understand mental illness when you don’t live it. There are going to be epic fails from well meaning people who just don’t know. As the parent, advocate, and voice of my little boy, I have to face uncomfortable situations. I used to wring my hands and hold my tongue because I was so desperate not to become “that mom.” My own mother is an incredibly gifted teacher, and I was literally raised to let the experts do their job and back them up at home.  

Boy Shadow

The Time to Speak Up

The most valuable lesson I’ve learned is not to discount my expertise or muzzle it. I’m the only person qualified to explain what OCD and Anxiety do inside my child, and I made peace long ago with losing my status of “people pleaser” in order to save him. His daddy and I are the ONLY ones with enough knowledge to give these wonderful teachers a fighting chance to make a difference. There are going to be people who don’t get it. I’ve already had the misfortune of meeting those who think that because my son is silly, handsome, and boisterous, he can’t be suffering. This is the Achilles heel of anyone with invisible disabilities. I use my voice to slay this dragon and will continue to do so for as long as I live.

Standing up for your child, even when it’s not pleasant, might make you a few enemies. It might make you “that mom” in certain circles. But, that’s okay because those are not your people. What they are is the very reason you have to speak up in the first place.

I am his voice and his advocate. I am the only armor he’s got in the fight to keep mental illness from stealing his education. It’s my job to save his future.  

The good guys will understand why you just asked for your third meeting during the first six weeks. They will forgive you when you are a little overzealous. They will see you are a weary soldier fighting a war that doesn’t end and just might show you some grace. If they are anything like the teacher currently in charge of my boy — they will join you in battle. Fighting pediatric mental illness takes an army. I am thankful I broke the silence and started gathering mine.  

The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.

, , , , , ,

8 Responses to The Hidden War :: Facing School with Pediatric OCD

  1. Emily S. August 20, 2017 at 8:02 am #

    What an amazing strong message of encouragement! be your kid’s advocate!! Praying for your family to have a great school year!

    • Chalna
      Chalna August 20, 2017 at 3:13 pm #

      Thank you SO MUCH, Emily!!!!!!

  2. Sandra August 20, 2017 at 12:32 pm #

    You are an amazing Mom! You have perfectly summarized what it is to be THAT mom and I am forever thankful to my son for teaching me to be one also.

    • Chalna
      Chalna August 20, 2017 at 3:16 pm #

      Sandra, you made my day!!! THANK YOU!!! We may be weary, but warriors can handle anything! I’ve decided that being THAT mom is actually my secret super power. LOL!!!

  3. Mary August 20, 2017 at 10:05 pm #

    I have tears in my eyes … my anxiety/OCD child starts kindergarten next week, I SO needed to read this. Thank you!!!

    • Chalna
      Chalna August 21, 2017 at 2:50 pm #

      Thank you SO MUCH for this, Mary! I began writing openly about our struggles for two reasons. The first was to help break down the stigma of mental illness and promote understanding. The second was to help families not feel so alone!!!! My son was first diagnosed with GAD right before his 3rd birthday and there were so many years when I felt utterly and completely alone. Unfortunately, I still have tough days when I feel that particular pain immensely, but then I remember that I’ve connected with lots of mamas just like YOU!

      As I write this, I’m firmly rooted in the hard days of back to school. While this piece was just published yesterday, I physically wrote it a few months ago. We are back at the VERY beginning now with a new teacher, new room, and new faces. And it is so so scary every. single. year. Reading your words gave me a much needed smile and reminded me EXACTLY why I keep writing about these things! So thank YOU, fellow warrior mama!

  4. Kim August 21, 2017 at 12:11 am #

    Thank you for sharing! I am entering this world of diagnosis with my 11 year old for the first time. It’s a scary and overwhelming place to be.

    It sounds like you have used a lot of resources, but I’m wondering if your son was tested for high functioning ASD. That is what I am expecting my son’s diagnosis might be, so I’m neck deep in research to learn about it. A few of the things you described sounded similar.

    • Chalna
      Chalna August 21, 2017 at 2:30 pm #

      Kim, you are SO WELCOME!!! I won’t sugar coat it, this particular road can most definitely be a scary, isolating one. The good news is that truly amazing people always seem to come out of the woodwork! 😍

      My kiddo has been tested for all the things at one point or another. 😂 I knew something was wrong from almost the very beginning, honestly. He went through his first complete round of psychological testing just before his third birthday and we got the results soon thereafter. Back then, it was PDD (Pervasive Developmental Disorder, under the ASD umbrella), Generalized Anxiety Disorder and Sensory Processing Disorder. The main focus was always on his anxiety, which was incredibly severe for such a very young child. PDD was changed to “probable Aspbergers” before that dx was dropped from use altogether in 2015, and then ASD disorders of any kind were dropped and OCD was added about 18 months ago. The hardest part is that he doesn’t fit completely in any one box and this has always been a huge work in progress.

      The biggest lesson I’ve learned is that as he’s growing and maturing, everything is constantly changing. Meds that once helped will stop working, doses of new ones constantly need tweaking, types of therapy have to be swapped as his needs shift and symptoms that are debilitating in one season of his life change into something entirely different in another. It’s hard to keep up with FOR SURE. I feel like we are forever trying to pin down “THE ANSWER” when I don’t think anyone is ever going to be completely sure. There’s no definitive blood test for these disorders. No swab or biopsy or any way to say, “YES. THIS. 100%”. There is a constant ebb and flow to treatment and we live on a roller coaster that goes from relatively easy hills and valleys to one steep drop after another without much warning. This is why I’m so passionate about helping those around him, like his teachers and friends, understand what’s going on.

      Psychologists and psychiatrists have had different theories over the years. He MOST DEFINITELY has autistic symptoms, but he doesn’t have problems with eye contact or communication at all, which usually takes ASD out of the running. We tested in the school district during his pre-K year and he was well on the way to receiving Autism services, until they observed him in his preschool environment. While he hid under a table and didn’t speak during the testing with strangers, he was open, laughing and happy while nestled in his safe zone of the church preschool. And so we moved on. In his last complete psychological evaluation, the psychologist attributed his autistic-like symptoms to his anxiety disorder, explaining that the two different disorders can look very much alike. But when he’s misunderstanding everything I say due to his black and white thinking, assuming that a teacher using a stern voice in the classroom hates children, and losing friends because of his rigid ideas about what to play, I wonder if we are wrong. Then I remember that regardless of what we are calling it, we are treating it the very best we can!

      PLEASE stay in touch and don’t hesitate to contact me with questions or even just a vent session to someone who UNDERSTANDS! It’s lonely out here very often and the simple knowledge that I’m not alone can be everything!!! The best way to get in touch with me directly is to message me on one of my Facebook pages – @SheShinesHerLight is my anxiety blog FB page and @ChalnaWrites is my business page. I’ll get messages there quickly! BIG HUGS!!!!! Thank you for commenting!!!!!

Leave a Reply