The trip to the neurologist...

Heidi Roger

Is there such a thing as bloggers’ block? I’m pretty sure I’m suffering from it. I’ve written sections of a blog post in my head many times while driving to work but this is supposed to be about my life with Autism, not the team of 11 auditors from Dubai who are torturing me daily. It felt like I lost my superpowers.

Then this morning happened. The trip to the neurologist with Andrew. It’s been more than 2 years since all that testosterone started rolling in and Andrew had some small staring spell seizures at school. I tried to pretend the first one didn’t happen but after seizure #2, I rallied and went to see the NYC neurologist recommended by our DAN doctor. Let me warn anyone else with a child with autism who refuses to use elevators: The pediatric epilepsy ward at NYU Med Center is on the 9th floor. I think I saw the ghost of Sir Edmund Hillary during that climb. It took the promise of pizza with real cheese still on it and a very patient nurse to get those leads on Andrew’s head. Only 36 hours and one award for “grungiest mom in the hospital” later, Andrew was diagnosed with epilepsy on top of the autism and we left with our new medication prescription in hand. The medication worked well and he seems to be seizure free.

It seemed like he should have a follow up appointment so I started searching for a new LOCAL neurologist. One neuro had several glowing recommendations from parents and a well respected in the NJ autism community pediatrician. I called to find out they did not take insurance, cost $700 for the initial visit, only accepted cash or check, no credit cards and the first available appointment: Feb 21, 2011. Of course I said yes. But I knew I could not wait that long for a prescription renewal so picked another less celebrity-like neuro and appointment day was upon us. I had remembered to ask what floor the office was on. It never occurred to me to ask WHERE the stairs were.

After some searching, a receptionist explained that the maintenance man would have to UNLOCK the stairs and this locked door was on the edge of the building accessible only from the outside. When Ashton Kutchner did not magically appear, I went in search of the maintenance guy. I found the maintenance office but was told I had to go outside and search for the maintenance guy. “He’s wearing a white shirt”. Apparently they can’t afford a walkie for this guy. I found the white shirted guy a few minutes later but he turned out to be some very nice random construction worker and not The Maintenance Guy. I thought about helping him with the sheetrock instead of suffering through the appointment. A few minutes after that, the maintenance guy materialized. I explained where we had to go and he took us up the stairs into the wrong wing. And that is why he is a maintenance guy. Back down another flight of stairs and up a third flight connected to the correct building we needed to get into. Door at the top of the stairs: Locked. I suddenly had the overwhelming urge to cry. If only my son did not have autism, seizures and elevator-phobia, he and I would not be stuck in a stairwell late for a doctor’s appt. Sad quickly turned to mad and I made a phone call while I banged forcefully on the door and someone let us back into the civilized part of the building.

I restrained myself from unloading all this aggravation on the neuro during the actual doctor’s visit while Andrew was awesomely well behaved. One hour, one recommendation to do a follow up 30 minute EEG, a promise to refill the prescription when I needed it and some mixed feelings about the doctor later it was time for us to go. Andrew followed me out the door into the hallway. I turned to him to tell him we would look for the stairs and somehow, someway, he put his foot directly under my footstep. In one of those Kennedy assassination-like slow motion videos, my left foot just rolled off his sneaker sending my inner ankle and the rest of my body crashing in a jumbled heap on the floor.

I hated Big Pharma more in that moment than in the last 13 years of autism hell. I regained the upright position and begged Andrew to use the elevator. He did say “Ow, Ow” put his right hand over his heart and said “Love” and pulled me toward the end of the hallway where I soon found myself hobbling down the stairs with him and onto the rest of my “elevate it and ice it” kind of day.

Courtesy of Spectrum Publications

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