We Made It: I missed an exit leaving the Cape, no surprise as I was super sleepy. Sharing a bed with our daughter in an Inn she disliked (my mistake) left me super drained and groggy. Probably stirred up by the prospect of the following morning’s memorial service and reunion with former classmates, teachers, and dorm staff, our daughter rose from our shared bed seven times before finally falling asleep, having startled-awakened me six times in the process. That was enough to bolt me upright and sleepless so I turned to one of those teeny tablets that smooth the journey to Mr. Sandman land, it now being 12:50 a.m. Early rising, emotional outpouring and post-memorial mall crawling left me rattled and ready to head south. Oops, missed the exit toward Providence, got off on way to Plymouth, turned around in housing development with granite curbs (yes, you heard it) and poof, puncture.

Meltdown Memory Lane: By now it is near four P.M. AAA took forty-five minutes to get to this slightly rural suburban street where I am parked with my puncture, daughter and iPad whose cellular access ran out as I was typing yesterday’s post awaiting Mr. Triple A. Here is where special needs kicks in. Our daughter, tired, eager to get home, looking forward to her Saturday of horseback riding with Pegasus, and attending Ridgefield Park and Recreation’s “Out and About Club” visit to the Irish Festival in Danbury, began to melt…down, down, down. “Where is that man? This is terrible. I have to get home. What about Pegasus? Oh this is just great.” And so it continued.

Did I try to explain, reason? Yes. Poor kid, it was a tough day. Earlier we had talked “feelings”; she was clear, no regrets leaving her school for life back in Connecticut. But she did miss her apartment-mate a lot (transitions) and her new home and wanted to get back there soon. When the man arrived, and replaced the tire with the donut, he told me either to drive no more than fifty miles per hour, or just fifty miles period. I wasn’t sure which but armed with my Garmin, I went to a Wareham, Massachusetts tire store certain to get a new tire and head home. No such luck. Apparently my tires are huge (who knew, bought the car off the lot) and would have to be ordered, and delivered, maybe by Monday, possibly Tuesday. Excuse me?

Swarm Of Wasps: Now our daughter is furious, as stormy as the darkened sky with its buckets of rain pouring down on us, and oblivious to the kindly efforts of three lovely local gentlemen whose empathy for our plight lead them to busily search their iPhones for open tire shops in the area with mega tires. One gentleman recognized my daughter, as he is part of the maintenance crew at her school (Riverview is one of the largest employers on Cape Cod), but this connection offered no solace for our daughter at all. For me, it is deja vu. I am caught in that miserable space of needing my daughter’s understanding and finding only anger and cognitive disconnect. Memory Lane. Years of it. So I drove home. Two hundred and probably twenty miles all totaled between the backtracking and such. Never surpassing fifty miles per hour, but quadrupling the fifty-mile limit of total miles traveled. Crazy? Choose your poisons.

Frazzled But Safe: Despite the rain, the glare, the trucks and their spray and with my dear hubby driving two hours north and meeting us in Mystic at Friendly’s (where we dined on junk and sucked down two sundaes) to shadow us the rest of the way home, in fact we all made it, arriving home frayed and frazzled yet safe, the midnight hour upon us.

 An Awful Powerlessness: Reminders of decades of scenes at airports, supermarkets, movie theaters, wherever and whenever something went wrong that disappointed, frightened or inconvenienced our daughter weighed on me as did the image on this week’s cover of the New Yorker Magazine, a clever black and white rendition of a bedroom scene, little girl in her undies, piles of clothes stacked near a window revealing a bus waiting outside, and a mom, with that familiar look, a bit desperate, a little pained while the pint-sized powerhouse tried one outfit on after another, reality or a bus honking, irrelevant. With cognitive disabilities, these scenes don’t age out, hopefully they mellow out but with the perfect storm, they swarm back in, just like wasps, bearing down on your head, your exposed places, your sanity. Sound dramatic? I am sorry for that. It is all a matter of numbers. Accrued. As I tell couples I work with, it isn’t simple hurt that takes a marriage down. We all hurt the people we love. It is accrued hurt, how much hurt over how many years, that topples the love. With a special needs child whose cognitive disabilities lead to challenging behaviors, it is the accrued meltdowns day after day over years; though love is never toppled, the spirit can be for periods of time, that’s for sure.

From Their Perspective: Clearly my daughter felt powerless too. Anxious, tired, overwrought (I love that word) and angry that her mom wasn’t doing something to alleviate her situation. The details of tires never mattered. Why the puncture, why it took Mr. Triple A so long to get to us, why we were standing in the rain and not heading home, did not compute. Is this disability? I think so. And how awful that must be, not to really understand something and yet be so sidetracked by it. That is why so-called “intellectual challenges” create havoc and fear. She and I argued a bit, not much. But for a moment it went something like, “Its all about you Mom.” And crazy me again, I even tried to explain how her attitude was all about her. If ever there were a conversation that two people of any age, relationship or gender, should never have, it is this one. I was deteriorating on the spot. Yet, sometimes I do worry that this blog is all about me. And that is an awful perspective.

Apology: This morning, while our daughter prepared her breakfast, about to go off to riding with her staff person who was kind enough to meet us at our house, she said, “I am sorry for being grouchy yesterday. I was tired.” Thank you my love. “Do you forgive me?” You bet. Always have. Always will. Do you forgive me for being a mom who sometimes doesn’t get it either? But when we signed off on the weekend, though I love every inch of that gal, I felt such relief. She behaves better for everyone else anyway. They won’t get the same “stormin” around that we do. And that is a good thing. And for me, I behave better too. You bet.

©Jill Edelman, M.S.W., L.C.S.W. 2011