Omnibus 2012-2013 Webber Christmas Letter
Those of you who follow our doings from afar may have noticed (or not) that there was no 2012 Christmas letter. There was a simple reason for that: Sarah was struck head-on by another car in a severe accident during the first week of December 2012 that totalled her Scion Xb. I even had most of that Christmas letter written, but between getting Sarah into Physical Therapy, selecting and buying a new car for her and various other expediencies, we went into 2013 already behind the 8-ball. The Christmas letter, not being a life-or-death matter, was one of many things jettisoned. We've spent much of 2013 bailing.
Sarah is now mended as well as can be expected, though she still does regular self-administered PT to continue the healing process of her tendons in the right leg. Her PT should have taken a few months, but stretched more than half of the year due to conflicts with our own insurance company's subcontractor which kept cutting off payments. Miranda (who was in the accident, too) learned first-hand why you wear your seat-belt. She now goes into a panic if a car she is in starts to move before she is belted. Which is good. Both girls walked away from the destroyed car, so call that Grace and move on.
Sarah continues to volunteer with the High School Group at Hope Church, and spends time nearly every day writing postcards to 'her girls,' a job that she takes very seriously. This is not merely playing traffic cop for high school mayhem or giving stern lectures: Her role is principally as a mentor and leader of a spiritual and emotional 'safe house' where a small group (our whole church is now built around a federated small group model) can unpack their stuff in safety. The dividends are hard to see in the short run, but are always in evidence looking back over time.
Keeping all of the balls in the air in terms of household management is the whole of the rest of Sarah's responsibilities, and it is an extraordinary juggling act. We use the color-coded Google calendar for the entire family to keep track of who's going where and when they need to be there, which helps with reminders, but Sarah prefers a regular schedule. When Alex switched schools in September (more on that in a moment), which necessitated moving the morning alarm clock back to 6:10am since Alex's bus now comes at 7:20am and he needs nearly an hour to eat and goof around and dress before he's ready to meet the world. Anyone with children on the Autism Spectrum knows that regular routines help give a feeling of security when life feels out of control, but Sarah finds it helps her as well, especially when the sun is still abed that early in the morning.
Alex's third grade year (2012-2013) was pretty much a wipe-out. He had done relatively well in second grade, splitting time between an inclusion class and his self-contained Autistic class. Always desiring to move toward the mainstream, we tried to move him up with more time in the inclusion class for third grade. What we did not understand is that third grade is when the pace and complexity doubles all on its own.
Alex had a complete blow-out in his inclusion class, having to be restrained and removed most days; eventually he was returned 100% to his self-contained class, and even there, spent more time biting and taking the room apart than learning for the rest of the year. It was with a lot of tears (his teacher's and case worker's, and ours too) that we decided to separate him from his school and move him to a different facility, different teachers, etc. for his fourth grade year. A completely cold restart. Since the problem was behavioural, not academic, he was moved into the lowest functioning class possible with the highest ratio of teachers/aides to students. This was essentially the Last Chance Hotel before he would have to leave the district schools as a behaviour disorder case and be outsourced to one of the special-education institutions.
Two things happened to turn things around in 2013: Alex began using a new ADHD medication that caused his attention to sharpen. (He can't stay on it much longer because he's losing weight too fast, but for the seven hours at school, he has been much more tuned-in.) Suddenly, Alex was very much present in his world. This coincided with meeting his new teacher at the new school. She gets him, and gave him the false-freedom to write his own behavioural rules (within the confines of normal rules.) Suddenly, Alex felt like he was more in control of his world and himself. Many of the conduct disorders stopped, especially since his teacher wouldn't try to stop it...she'd just explain that if he took the room apart now, he'd just have to put it together again later. So go ahead and take it apart. This really took the wind out of his sails.
So now he's cruising along, still acquiring skills (math seems to be very easy, reading comprehension, very hard, but visual decoding very good) and all of that is great. But we're still camped out here at the 'Last Chance Hotel.' His academic and social skills cannot flourish here, not in the long term.
So it wasn't a surprise when we started getting reports from school that Alex was NOT socially engaged with his peers. He would read to them (he'll read to anyone he can outrun) but didn't really want to interact with them. When asked about it his complaint was, "They don't talk." That's true: All of his other classmates are non-verbal Autistic. He's tired of only talking to the adults. His case worker leapt into action at this: "Ya need some friends, kid? We'll find some friends!" His teacher and therapists are now scouring his school to find neurotypical peers who will tolerate his behaviours and are willing to be-friend him.
Alex is (for good or ill) beginning to perceive that he's different from everyone else. He is not like his silent peers, and he is not like his neurotypical peers, he is not a 'little boy,' and he is not an adult. Which leaves him as a demographic of one. Still, the direction so far this year has been good, and we don't appear to be headed out-of-district, for which we're very relieved. Let's hope there is yet more positive news to report in 2014.
Miranda is a completely different challenge: She is by turns, spitefully disrespectful, cuddly, vicious, kind, arrogant, polite, and intentionally rude beyond imagining. "The little girl, with the little curl" and following, except cubed and squared. She is not horrid to those younger or more vulnerable than herself: she doesn't kick dogs or pinch babies, which is good because she is enormous, strong, and as tall as her brother who is three years her elder. Thankfully, Miranda's current teacher knows what motivates her, and is doing a great job keeping 'our little narcissist' on track. The whole school district is working on Spanish as a Second Language and Miranda is eating it up, refusing to use an English word once she knows the Spanish equivalent. I expect that this will stop being fun about the time they start enforcing grammar and tense rules.
Miranda is a fascinating little girl in the 'if I didn't love her, I'd kill her' mold. So far her Autism Spectrum Disorder is on the mild side. (Oppositional-Defiance Disorder? The jury is still out.) It shows up most distinctly in strong memory for concrete facts: What is the top speed of a Peregrine Falcon? How do giraffes fight? What is the largest continent? All facts with concrete answers. She is complete perplexed by problems that cannot be solved without a pre-baked answer or require her to make simple predictions based on speculative data, a key trait in social intelligence. So she's going to rocket through elementary school and possibly middle school until she gets to questions about 'why' someone did something; That horrid type of question which require you to put yourself in someone else's shoes to see the world their way. We are waiting with a shovel at that wall so we can scrape her off it when she hit it in a few years.
Miranda has big plans for Daddy. I am to finish 'her Bus-bus.' (Aka, My 1977 VW Bus, a barn find which I bought for a song in 2012.) After discovering that the parts pipeline for this model had dried up completely, I switched gears(pun intended) and am adapting a modern Subaru engine in its place, which should make for driving that is much more enjoyable, quieter, and with *heat.* Miranda retains the delusion that this is her car. Pretty much all of my not-work, not-parenting time is spent on the bus which my Doctor describes as 'good therapy.' I hope to have it roadable by June, but all of my plans are held loosely and subject to 'the slings and arrows of outrageous fortune.' I thought my 72 Beetle would take me two years to restore. It took eight years. Like an over-compensating marksman, I'm aiming at the hat hoping I'll at least hit a knee-cap.
I've been churning hard at my job during the last two years: In 2012, I submitted a white paper titled 'Mass Provisioning in a Heterogeneous Co-Located Environment' for presentation at a Systems Administration conference in New Brunswick, New Jersey. (Yes, it is exactly as obscure and geeky as it sounds. The nominating committee loved it.) My management put me through the wringer though, first by asserting that I couldn't accept the invitation, then I could accept, as long as they pre-approved what I said, then at the last moment wanted to sponsor the conference. By the time I was back in town, the situation had turned 180* again and I was told that this two day event *was* my training for this year, so don't ask for any more. (As one of the presenters, this conference was free to me, and them.) I made it to the Large Installation System Administrator's conference as an attendee in D.C. this year, my first 'paid' education since 2007. Still, I don't think I'll pitch to speak again while I work here, though. They make it too much trouble.
A bright light for 2014 is that my employer has decided to revive my Linux Administration class, which I've taught twice yearly for eight years. There was one hiatus in 2013, but I've been given to go-ahead to bring the syllabus & curriculum up to date and then run the class again for three sessions in early 2014. This is always good for my group, because it shoots up sparklers of attention that there are 5 critical Administrators without which the whole company grinds to a halt, falls out of the market, and stops making money. It makes us look good, for a whole week at least.
I've given up trying to predict or plan for 'next year,' since none of the plans I've ever made even on the shortest of scales have come to pass with any regularity. It just reiterates the fact that I have no idea what's coming next, famine or feast. In some ways, it enormously simplifies my life, not having to plan for a future beyond today. Some people call this, "Living in the moment."
There was a blog post that I found earlier in the year which resonated with both of Sarah and I because it provided an accurately calibrated phrase to describe life with Alex in 2013. The whole blog entry is at http://momnos.blogspot.com/2011/02/asd-and-ptsd.html (read the comments, too.)
The phrase we latched onto was "Ongoing Traumatic Stress Disorder." Parenting a child or children with an Autism Spectrum Disorder can't be described as Post-Traumatic Stress Disorder because there's no "Post" of any kind. Alex had a really bad third grade year and even though the past two months have been better, we still feel numb and shell-shocked and traumas are 'Ongoing.' We are incredibly grateful for the support of family and friends and our church. We've been especially blessed by Sarah's parents who moved to NJ two years ago to be more on-the-scene help.
Still, if you'd noticed a lack of blog posts or correspondence recently, our "OTSD" would explain why. Sarah hopes to be blogging more in 2014 at Passing For Normal, and or follow what she's reading on Goodreads, even if she spends a lot more time on Facebook than anywhere else. And you can read about Marshall's current jackleg automotive engineering at DIY-BusAru (He's also documenting his conversion for other's benefit on a not yet launched website: The VolksarU Project.)
Marshall & Sarah Webber