Ever have one of those moments that you freeze in your memory banks and play back at a later time and wonder “What was that?” When you have a couple of children on the spectrum, you have several or many of those times logged away that you ponder over later—usually when trying to desperately fall asleep to log some zzz’s before the crack of dawn. I had one of those surreal times that wasn’t horrific, earth shattering or desperate a couple of weeks ago. It has just stayed with me as I shake my head and wonder how anyone else could possibly step into my shoes and survive with any semblance of sanity.
This story is true. The names have been reduced to initials to protect those “identified” and even the one who should be. This isn’t for the faint of heart (like my mother or anyone else who just doesn’t “get it”). For those of you who live this life like I do, day in and day out, I hope that it is a funny story. You know, not funny ha-ha but funny in I have to laugh or I will cry until the make-up runs down to my knees way.
C. & B. had follow-up appointments with their developmental specialist in a place that is over an hour’s drive from our house. For many, the thought of being in a car with 2 kids on the spectrum is enough to scare them witless. They should stop reading now. For the rest of us, this may be a common occurrence that repeats itself with frightful regularity. Both boys were due to have “med checks” as well. (Read, are their current pharmaceutical interventions helping or do we need to change the doses?) You can guess what type of appointment this was going to be as I was going to be requesting increases for both. They are growing boys with growing “issues.”
Throw in the fact that we weren’t taking the van as the AC wasn’t working, so we are dealing with an issue before we even left the driveway. Even though both boys can pester each other with amazing abilities in the van, there is a bigger buffer zone between them. In the car, not so much. We planned on leaving early enough to account for the drive, traffic, having to find a parking lot in the labyrinth of a parking garage and to attempt lunch out. (Quit laughing!!) I had the toll $ ready, extra pull-ups, the portable DVD player charged, drinks and a snack (if necessary) and steeled myself for the journey with extra caffeine.
Planning does not take into account the barrage of conversations from 3 different voices all at once aimed—of course—at the driver. My husband, P., does not have an “official” diagnosis…but really should. He added to my headache by launching into his own observations about whatever sports story he was jabbering about while trying to include me in his conversation. C., my older son, kept interrupting and commenting and then branching out on his own tangents. B., my younger son and the bearer of the most diagnoses, was repeating lines from different DVD’s while yelling “cow!” every so often when he spotted a bovine group. We hadn’t even traveled 20 minutes before my nerves were getting frayed. Then P. and C. start the obsession about the time and asking “When are the appointments again?” I repeat my answer at least 3 times to satisfy both of them. B. screams when his brother starts whispering to him. Then screams again when he notices a deer. P. tries to change the radio channel to ESPN—not going to happen. C. starts the bet about how long it will take us to get to our destination. The bickering continues. How many of us deal with this on an ongoing basis? Seriously, I am less distracted if I was hooked up to a cell phone’s hands-free device, eating and trying to change the radio station all at once. (NOT that I do that…it is an analogy!!)
Skip ahead, to an hour into the journey and we are trying to navigate traffic for lunch. I will save that story for another time as eating out is always a challenge. Suffice it to say that the “chatter” from the car spilled into the restaurant booth with me trying to answer three questions simultaneously as I place our order with the wait staff. Hurry up and get through lunch to rush back to the AC since it was quite humid. Strap B. in his seat, remind C. through clenched teeth not to bother his brother. P. says we are going to be late. I consider stuffing him in the trunk.
Arrive at our destination after incessant bickering and failed attempts at distracting everyone by turning the music up to a lovely song. (At least I thought so.) Drive up 5 lousy decks to find a parking spot only to have P. and C. make a bet about the exact moment we will be at the reception desk. Grab B’s hand to prevent an automotive calamity as we race through the parking garage to one elevator to go down, through a hallway and foyer, to another elevator to go up to our floor. We race past the resin statue of a “Doctor Kangaroo” and other delightful items that can distract B. from moving 2 feet at a time to arrive at the reception desk. You can imagine how the appointments went after all of that. Fortunately, our doctor gets it, understands, and tries to accommodate as best as possible. After all, this is a typical Thursday for her. Over 90 minutes later, and we are heading back to the car, new medication orders in hand, a new diagnosis to add to B’s vegetable soup, and 2 packets to complete for both boys to be added to a research study. (And yes, I voluntarily agreed to that.)
Strapped back in the vehicle after bathroom stops, pushing the button on every drinking fountain in sight and walking the winding way back through the garage…I pause. I take a deep breath and rest my head on the steering wheel. There is a rare moment when everyone stops and just looks at me. I collect my patience from the deep well reserve within me hoping that it won’t run dry on the way home. I take another breath and turn the key. The moment of peace has passed and the barrage begins again. And to think, I get to have this drama almost every time I am behind the wheel. If I won the lotto…I would hire a chauffeur.
I have left out more details since this would turn into an epic work of bizarre stream of consciousness babbling that could rival my reading of a couple James Joyce works. Suffice it to say that we parents deal with far more than just diagnoses, advocacy, therapy and untold stress. Sometimes, getting from point A to point B is more involved than most people can possibly understand. Our normal is their Twilight Zone. For all of you special parents out there stay safe and may you arrive with some semblance of sanity intact. And if you know of a very cheap chauffeur…drop me a note.