Before or After the Fall
NEXT TO MY DESK at work, there is a picture of me with my three daughters standing in the Badlands’ stone ruins in South Dakota. Gracy, Mollie and I stand in straight-forward poses, smiling at the camera. Tess is off to our side, holding a giant dandelion puff, about to blow the seeds into the wind with a look of pure joy on her seven-year old face. She was our goofy, quirky kid who for a few years of her young childhood would only wear her one-piece spandex Spiderman suit or her velour Minnie Mouse coat. Being a twin, she could wear her sisters, and I’d wash hers to keep it in the rotation. By the time the picture was taken, she’d been diagnosed with sensory issues, motor and speech delays, ADHD and some social anxiety. Weekly occupational and speech therapy helped deal with these challenges. School wasn’t easy but none of these things were debilitating, or got in her way too much.
Three weeks after taking that adventurous trip and that snapshot, Tess would suffer a traumatic brain injury. She would be in the bathroom bathing Barbie dolls with her sister and climb up on the wet sink. She would lose her footing and fall backwards to the ground and hit her head on the side of the bathtub. The blow would cause a concussion and complex skull fracture. After some time in the hospital and weeks of brain rest, she would seem to recover. She’d go on to first, then second and third grade. But during the summer before the start of the fourth grade, she would begin to suffer debilitating anxiety and panic attacks. The joy she used to experience riding horses would cause distress. She’d physically shake when her anxiety grew to a fever pitch. School would become unbearable. She would regress in her behavior and baffle us all. Self-harm followed. Fairly benign at first with the cutting of her hair but she’d quickly graduate to making small cuts on her arm. And writing out suicide plans on her calendar, noting which kitchen knife she would use.
Our daily lives included shuffling between appointments with psychiatrists, her psychologist, a neurologist, and her private tutor; all while working a full-time job. We’d tweak meds and throw more meds at her, all with the hopes that some combination would help her, stabilize her, return her to her old self.
So what exactly happened to that happy girl from the picture? Looking at her exuberance, I wonder, was this current reality her destiny? Were the smaller symptoms back then destined to grow larger as she grew? Did she reach a developmental stage that allowed her to express the constant fear that imprisons her? Was it always there? Or did the blow to her head rattle things so severely that the injury is the true reason that the last three years have chipped away at and deflated her sweet soul?
I kept looking for answers. A neurologist explained that we would be treating her symptoms in the same manner even if we could point to the head injury as the culprit. The brain that existed before the fall is the brain we have to work with after the fall. There is no quick fix. There is no going back. There will never be a definitive answer. We just have to keep searching for the right combination and accept that she could always struggle. Home continued to be a safe haven but school continued to be a torture chamber where she was chastised for not being able to sit still, or attend to the teacher’s instruction or make any real academic gains. She shared that it was like everyone was speaking in Dutch and she just couldn’t figure out what anyone wanted, what anyone was saying or what she was supposed to be doing. It was too hard. She begged to be home schooled.
The ‘everyone was speaking in Dutch’ explanation stuck with me. I could no longer heed the school’s basic assertion that she was a problem child. I hired an educational advocate for guidance and she suggested we see an audiologist at The Ohio State University who was able to connect a few dots and diagnosed her with severe Central Auditory Processing Disorder. It turns out her actual hearing was intact but the transmission and interpretation of sounds from the ear to the brain was distorted and she couldn’t truly “hear” someone when they spoke when ambient sound was also present. The classroom was filled with noise; chairs scrapping across the floor, pencils being dropped, air conditioning or air from the heater blowing in the room. To her it was all sensory over load. The condition also caused her to confuse beginning sounds of words, which added to her constant confusion.
I fought the school to get an FM system in place that would amplify the teacher’s voice through a microphone she’d wear around her neck that piped her voice into hearing aids that Tess wore but because of her sensory issues, they made her ears itch and they were uncomfortable. She could hear what the teacher was saying but still couldn’t produce any real school work without assistance. We added more private speech and language therapy. The school stood by their take that she was fine academically and that her struggles were emotional in nature. Things came to a head when after months of asking for a true assessment of her reading and math function, we received confirmation that she had significant holes in her grasp of foundational concepts.
I took bold action and pulled her from her school. I rented an apartment in another school district where the advocate assured me her needs would be better met. Her twin stayed back at the home school with dad and again we shuffled back and forth through a new adventure. Tess’ Individual Education Plan was revamped to include some effective interventions and accommodations. This school had alternative seating options for kids who needed to move to learn and a school-wide FM system with built in speakers in each room so Tess didn’t have to wear her hearing aids. Her learning differences were accepted and embraced. Slowly, we got a bit of the old Tess back.
We moved her twin over to this school three months ago, and are settling into a new home in the district. Gone are the days of having two homes. Our family is reunited. The road ahead is still marked with potholes and speed bumps but it feels like we are moving forward.
What never leaves though is my wish to have my girl back. I’d settle for even just a little bit of her back. I’d settle for hearing her infectious giggle just once in a while. I’d settle for the incessant questions that she used to ask out of curiosity (or, at least I thought were out of curiosity, and not fear). I’d return to incessantly washing her Minnie Mouse coat. I’d return to a time when I didn’t know just how hard it was going to become.
Photograph by Allison McGinley