At the Ballpark
The Webbers tour the Philadelphia Phillies ballpark - June 2011

"Mixed Nuts"

"Stress is when you wake up screaming, and realize you haven't fallen asleep yet."
--Edward Polish

Last year I wrote that we would wade into 2011 with our water wings on and hope we encountered mosquitoes, not alligators.

Well, we did not meet an alligator. But we met a couple of hundred piranhas, so we've spent most of the year performing miraculous 'walk on water' efforts to get to the turning of the year. It appears that we'll make it, but we might look like a denuded anatomy skeleton by the time the hoopla starts in Times Square.

While I won't whimper out every tough break of 2011, it really has been one of those 'keep laughing so you don't start crying' years. For those of you in the East, you probably already remember that it was a very long winter. The good news is that we know that Miranda doesn't have Seasonal Affective Disorder. (She loves winter.) We know this because she was the only one of us who wasn't hollow-eyed by March. (Alex, Sarah and I were all in emotional comas. Miranda was still happily bouncing off of the walls.) When the weather broke, Alex's behavior and school performance snapped back and he started to make forward progress again. This is in line with last year too, so we've come to just expect a bad winter now. He and I floundered through a swim class at the Y that became more about appropriate behavior in a public locker room than swimming. Then the first bud of spring came and I happened to be seen playing an online version of Super Mario Bros. Alex's eyes glimmered and we suddenly had leverage again. He went on to become a Mario maniac and later in the year, repeated the same enthusiastic embrace of Angry Birds. Both of these motivators have slowly cracked the throttle open at school again.

Seasonal Affective Disorder really ground Alex down this winter. -- February 2011

Alex spends a lot of time playing video games, thinking about video games, and drawing, drawing, drawing. The drawing isn't very good, but at this stage we see everything in terms of 'therapy' and while drawing might fall under 'fine motor skill,' I'm more interested in seeing him work to tell a coherent story through the pictures, rather than in the quality of art. And that's coming along. Alex spent the summer being drilled by his Summer School teacher on his penmanship (and now writes pretty nicely) and playing any Angry Birds related games (real or made up) at home. He is also drawing stacks of pages of scenarios and characters. Which is all extremely normal for a now eight year old boy. He's still about 4 years old emotionally, but he is very friendly and has been partly main-streamed at school so that he spends the first few hours each day with normally developing peers. Every year is an improvement, though every year leaves him farther behind his peers. But he is not losing any of the hard fought ground he has gained, either.

Miranda expresses her oversized personality. There are three introverts in our house...and then there's her.
-- August 2011

Miranda has been a very different kettle of fish this year. Her verbal skills have continued to head up and up from their slow start and while she is not reading yet (a fact that annoys her) she is making progress. After a few regressions, she is pretty reliably potty trained. We had a horrible scare in February when Miranda began coughing and wheezing...and couldn't stop. And we wound up in the ER. Miranda has got lousy lungs, but she refuses to let it slow her down. She has made a few girlfriends across the street and their tolerance for her full-blooded narcissism has been a help. By narcissism, I don't mean mere childish self-centeredness: Miranda is a master of defiance in the face of consequences i.e., "I don't know how to get dressed! I can't walk, my legs don't work. I can't put on my shoes: there are spiders in them!" Etc, and etc. What ever reason cited is untrue and immaterial; the excuse is just cloaked defiance of almost any expressed request or instruction merely because you wish it. Her teacher at school is performing a daily full-nelson on her will and Miranda often runs aground on the hard realities of her attention deficits and 'impulse control issues.' While much of this willfulness recalls Sarah at an earlier age, Miranda sports the type of blind oppositional rage that motivates a 98 pound weakling to snap a mad bull on the nose with no concern for the consequences.

We decided to try Vacation Bible School at our church this year,as it synchronized nicely with the dead week between the end of the school year, and Alex's Summer School. Most churches have nothing to offer for developmentally disabled or delayed children in any service or program, and consequently whole families stay away. Our church has supported families and children with special needs since it began and this program of 'buddies' for children has a program which has grown enormously since then. Thus, Alex and Miranda had aides during their time at VBS and the experience was a great success for them, opening up the world of the spiritual in language that they could resonate with. We continue to be generously blessed by our church family.

Alex printed out all of the planets and hung them from the star canopy in his loft bed. But he has moved on from planets and is presently concerned with finding all of the hidden 'golden eggs' in the Angry Birds game. - June 2011

Miranda's rocky year behaviorally led us to a reconsideration in June: The Doctor who originally diagnosed Alex with Autism in 2006 saw Miranda again in June and without much pencil chewing, placed Miranda on the Autism spectrum as well. Not with Alex's functional problems, but closer to the Asperger's range where raw intelligence is high but a working awareness of social behavior and the unspoken rules and information passing we do is just lost on them. Sarah and I walked out of the office in Philadelphia a little stunned. Two? We knew that Miranda had some general unspecified behavioral or neurological something-or-other but TWO on the Autism spectrum?!? That there were problems was obvious, but having gone two-for-two can knock you into the basement emotionally. So Sarah and I agreed that we were going to pull in another doctor to re-evaluate both Miranda and Alex.

In the meantime, we have changed nothing for Miranda in terms of therapy or schooling, because everything that she is presently getting is exactly what she needs to be getting. At her age, therapy would be the same regardless of the deficit, and we have an outstanding Child Study Team and relationship with the Special Education system in the Mount Laurel District. If I were offered my dream job at SpaceX in L.A. or at Pixar in Emeryville, Cal. or any number of fascinating places with dreamy weather and interesting work...we would not be moving. While we didn't intend to remain long term residents of New Jersey, it appears that we are now making multi-decade plans, whether we want to be or not.

A decade of restoration work, lots of dollars and patience and frustrations and pride and trophies later, the 1972 Super Beetle rides into the sunset. It is now held by a collector in Malvern, Pennsylvania. -- June 2011

So about the time we got the news that Miranda was 'on the spectrum' everything else went completely off the rails.

After a decade of restoration and some of the finest self-taught work I've ever done, I sold my 1972 VW Beetle. It wasn't quite like selling one of the children, but it was close. I watched it roll off down the street to a collector in Pennsylvania, and then went back inside and sighed to Sarah, "Well, its gone."

"Yes, dear" she said. "The refrigerator has gone, too. About twenty minutes ago."

The rest of the year could be summed up by Hamlet: "One woe doth tread upon another's heel, so fast they follow."

Exhibit A: A new boss at work. We've been reorganized so many times, we have 'reorg fatigue.' A new departmental honcho was brought in from Chicago, spent the first six weeks on a listening tour, and then started firing people. Old timers, newbies, competent, incompetent. I was shuffled over to support from engineering to plug a hole in an organization chart, and now I'm stuck here, so I've routinely been pulling sixty hour weeks since mid-year to keep my job. Every day on the way home I call Sarah and answer the most important question, "They want me to come back tomorrow."

So as the situation at work heated up and started ruining our sleep, we got the next wave before the first had receded: Bedbugs.

Miranda and her favorite subject...herself. - October 2011

It isn't just a 'sleep tight' children's rhyme. New York City is under siege from them. Some home owners literally empty their bank accounts trying to get rid of them. An un-earned social stigma surrounds them (they don't have anything to do with cleanliness nor do they carry disease) and they are intensely difficult to kill.

We're still trying to imagine how they came to our house, but as of Christmas, we still haven't quite gotten rid of all of them, despite having done everything in the book short of burning the house down. Now I understand why some people crack: you can feel them crawling on you at night even when they aren't there (a hallucinatory effect called 'formication.') We were already wound up pretty tight, from the new tourniquet of my work environment, and the normal level of stress at home with two special needs kids.

So in mid-August, we went on vacation. Which is kind of a weird thing to do in the middle of a war. Frankly, we had gotten to the point where we saw travel as just another opportunity for everything to go explosively wrong. Two children on the Autism spectrum travelling coach class 6000 miles round-trip to San Diego on 4 planes through 4 airports. What could possibly go wrong? (Have you read the papers lately?)

Ha. This is where there was nothing to do but pray for the best, but prepare for the worst. With our Year-to-date record at that point, praying for the best didn't look too promising.

Nothing went wrong AT ALL on our flights. Sarah and I had come loaded for bear: every possible special food-stuff, tranqualizers (for the kids AND for us) and enough laptop batteries to let them watch movies and tv programs for the entire flight if it fit their fancy....and so on. Enough diversions for an army.

Miranda mostly colored and talked about flying. Alex mostly played Angry Birds on a defunct iPhone I'd come by and read. Sarah and I arrived in San Diego perplexed about why we were still alive. (I think ministering angels were involved.)

What followed was the best vacation I've ever had, and mostly all we did was sit around with family or do short day trip items like go to the beach or the zoo. Sarah and I took a few days away and saw some great outdoor Shakespeare thetre performances downtown. Alex and Miranda got an entire year's worth of swimming in during the two week stay, and there were so many adults that there was always someone to watch them, or play with them, or take them places, etc. They truly had their own 'vacation.' And then we flew home. And it was also uneventful.

The Boyle-Wilson clan in San Diego: Tom & Lorita Boyle (with Miranda), Jon & Stephanie Boyle, Katie (Boyle) Wilson and Great-grandma Helen Boyle-Strauss, Brandon and Piper Seelye, Aaron Wilson, Alex, Sarah (Boyle) and Marshall Webber, Laura Wilson (front) Megan (Boyle) Olivas, Ryan Olivas and baby Dashiell. - August 2011.

So God decided to stay the four-horsemen of the apocalypse during our vacation and our children's ability to fly well may open up all kinds of decompression opportunities. Alex's 'behaviors' were in almost complete remission while there, which is how we could tell he was relaxed. Miranda could often be cajoled into what we wanted her to do. Everyone was in their happy place.

Then we got home and discovered that through a paperwork snafu, the school district was going to send Miranda to an different school, with a new, unknown teacher, and in a different inclusion class. (The form letter had come in during our absence.) And Sarah and I went right back into crisis response mode. We got it straightened out a few days into the school year, and it's good that we did: Miranda would have eaten that new teacher whole and spat out the bones. Thankfully, Miranda went properly back to her old class where her tough teacher knows how to deal with her malarkey.

There have been too many other crises to list, as they rear up without warning threatening to swallow you whole, and you just have to gun them down while you keep moving, as there is no slack in the system. We've taken to paying baby sitters, not so that we can go out and see a movie, but so that we can just go into the other room and work or just to talk for a few uninterrupted hours while the sun is up. Sarah's parents have been coming quarterly to let us recover for the next sprint, and my mother has assisted where she can. Most of the rest of my family here is either too distant or too overbooked to help. So what happens when there are simply more crises that there are waking hours to deal with them? And mis-judging JUST one will cause all of the dominoes to topple?

In November, Sarah's parents, Tom & Lorita Boyle, made a huge sacrifice and have moved to New Jersey from Madison, Wisconsin to help us with our children. This will give us enough slack so that if we need just ONE MORE adult to juggle the kids while we beat out a fire, they will be nearby in an emergency.

Alex and Miranda have the standard sibling relationship of uptight older brother and bossy, bratty little sister. But they also play together and actively seek to engage each other. The clock is running out on their childhood, a fact that motivates me to be around for more of it than I have been. Alex decided he would be Mario for Halloween, and Miranda accessorized her princess outfit with Fairy wings and a tiara. - October 2011

Tom & Lorita moved into their nearby apartment on November 19th. And on November 22nd, the insuperable emergency struck: I was in a serious car accident that totaled my Corolla and shattered my left collarbone into four pieces "and change." I have spent most of the last six weeks reclined and in a sling, and as of this writing, have only just returned to work. I am continuing recuperation from 3 hours of surgery to plate, glue, screw, mesh and stitch my collarbone back together. At this point, I'm mended enough to drive a used 1997 Tercel to work, though time spent sitting upright tires me quickly. I guess this proved the wisdom and value of Tom & Lorita moving here...right? But wait, there's more...

Prevenient Grace: If the strike had been 18 inches further foreward, Sarah might have been writing this letter solo. Thankfully, I was the only one in the car. - November 2011

Just as I started to get a little mobility back in my arm, Sarah fell badly and tore her Achilles tendon. Prognosis: Full three months. But driving (it would be her RIGHT foot) is extremely painful. So she can't use her right leg and I can't use my left arm for anything either. And here are Grandma and Grandpa Boyle, freshly arrived and still unpacking.

We knew we needed help. We just didn't expect to need ALL of this help beginning immediately after they landed!

So if you'd kindly say a prayer for us, here's all we'll ask:

"Would someone please turn life back down to 11?"

Here's hoping for a 'nothing to report' in 2012.

Sarah: I only have a few things to add, as Marshall has summed up our year pretty effectively. I still enjoy Sunday nights out of the house, working with the HS students at church. I write them lots of postcards and send them birthday cards and Valentines and anything else I can get the Youth Pastor to sign. (Actually, Dave is an excellent leader and my work with Youth Group is often a great source of joy.)
The final product of two years of effort.
I had a big happy dance this summer when I finished "White Lilies on Red" for my sister-in-law Stephanie. She and Jonathan recently had it framed, in the middle of preparing for a baby expected around Easter! My other brother and his wife are also expecting any day now! so my parents have the joy of doubling the number of grandchildren all in one year. I also joined Facebook last spring so if you want to find me there, look me up under "Sarah Webber." I also keep my blog updated at least once a week for those of you who like to read about the "play by play" events in our life. But I am so ready for an existence beyond crisis management and while I like the physical therapy office I'm currently visiting twice a week, I will be even happier if I never have to see them again.

Marshall & Sarah Webber
Alex and Miranda