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.
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.
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.
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.
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.