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| They may have their problems, but they ain't no ugly kids. You can also see the genuine affection coming out between Alex and Miranda. Miranda is especially a ham for the camera. - August 2010 |
"Tumbling Sky"
Hello from New Jersey.
We hope this note finds you and your family well at this turning of the year. As always, we have a lot to report, and hope to hear from your family about all of your goings-on, too.
Sarah and I started the year fighting uphill through molasses with the kids. We spent much of the Winter and Spring having to constant re-tune Alex's medications to allow him to focus in class and suppress compulsive behavior so he could learn. Tuning these two medications is tricky work as the one that lets him focus also increases him emotional fragility which meant Alex spent much of his Kindergarten year as an emotionally fragile, explosive little boy. His academics continued to progress well, but his social skills didn't improve much. Autism sucks.
Miranda, on the other hand, suddenly took off socially like she was riding a rocket. Her language, which had been limited and her attention scattered (even for the three year old) suddenly clicked into some kind of groove and she raced ahead in her verbal and social skills which brought on a bout of newly empowered defiance and rage. The terrible twos, right on schedule: a year late. We've found that, except for her physical stature, she runs about a year behind in all skill sets. She has no formal classification other than 'developmentally delayed,' so services may be altered or discontinued by the school district 'at will.'
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| Alex loves to read to anyone he can get to hold still for it. In this case, my father, Rick Webber, and sister, Miranda. Alex memorizes recorded readings of books to the point where he can 'play-back' even the accent and cadence of the original reader. (Note Miranda's short hair; this is the fix from our talented hairdresser after she used her scissors on her own hair. - November 2010 |
By the time we reached the end of school in June, Miranda fell straight into a crack in the school system recently opened wide by our governor who slashed state education spending by 55%. Miranda has both a sensory disorder that causes her to be in constant movement and sufficient developmental delays that place her at least a year behind her typically developing peers. But she had also improved so much in a single year of special-ed preschool that we got the pyrrhic news: She had 'too good' an outlook to qualify for special-ed summer session, which needed to be reserved for students who needed much more assistance than she did, even though she remains a year behind.
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| Alex and Miranda get more mileage out of interactive play now than ever before. - October 2009. |
You never met a more miserable creature during a summer vacation than Miranda. She'd rather be in school where the structure is rigid and the routine is predictable. The summer was made more difficult by Sarah's time in California (more on that in a moment), an absence that Miranda took months to forgive Sarah for.
Having ground our way through the Winter, Spring and Summer, we started the kids back to school with a palpable sense of relief. I had projects that had been queueing up at home that needed long blocks of attention to address and Sarah longed to get back to mentoring her high school kids in the church. We were both worn thin by playing 'whack-a-mole' with our children's explosive and occasionally violent behaviors.
Then...without warning, the whole world pivoted.
Alex was upset about being moved to a new school with a new teacher and away from the school where he has attended since he was 35 months old. (He turned seven in October.) So he spent the first two weeks being mulish...and then settled into a groove and started making amazing progress with cognition, vastly better predictive thinking and a deepening sense of imaginative play.
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| When Alex isn't anxious or overstimulated, you actually see through the Autism to see the person he is under the disability. This is probably the most relaxed formal portrait ever taken of him and it represents a milestone in his ability to control himself in an overstimulating environment. - July 2010 |
Miranda, after three years of therapy and fifteen months of formal schooling, suddenly shifted from having random and idiosyncratic speech to speaking in full sentences, potty training herself in about ten days just after her fourth birthday (we took her teacher's advice and simply removed her pull-ups during the day, and after a messy week, she was cooperating) and even handling easily task sequences that would have been beyond her just weeks before.
So basically, we got two new kids for Thanksgiving.
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| Tom and Lorita came for a visit around Easter, so we all made sure to pose together before they had to fly home. Alex is bothered by flash photography, which explains the squinty smile he puts on every time he sees a camera come out. - April 2010 |
This isn't to say that everything (or even any thing) is 'fixed,' merely that temporarily, we are enjoying a glimpse of optimism. Both kids spend much more time playing with each other as playmates, rather than squabbling with each other as competitors or simply bouncing off the walls in rhythm with the television. There is now genuine affection between them that was merely tolerance before, which is a great relief. Miranda gets home about noon and spends the early afternoon repeatedly checking to see if Alex's bus has arrived. In turn, Alex plays scripted games with Miranda, reads to her and sits with her closely; their desire for social interaction is trumping their combined neurological handicaps.
Both kids have grown substantially. Miranda thunders through her class as one of the youngest neurologically, but the largest in stature. At age four, her athletic frame is almost entirely free of baby fat; she is all muscle and sinew and (painfully) elbows. I'm thinking of hiring her out to pull up tree stumps. Alex continues his narrow diet, yet continues to grow up...not out. He shows every sign of becoming a lanky giant, like his uncles.
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| The 'Disney Princess' bug finally bit at our house. Miranda manages to look both delightful, dangerous, and like *trouble* all at the same time. When puberty hits, I'm buyin' a gun. - October 2010 |
After we removed egg from Alex's diet last year, all of his painful and distracting eczema has disappeared, which allowed other behaviors to resurface, like compulsive chewing. We're dealing with that by giving him things that are designed to be chewed on to spare furniture, clothing, erasers and anything else interesting or within reach.
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| Alex pauses before launching himself back into the Atlantic on his body board. He paddled so far out sometimes we though he was headed for international waters. - July 2010 |
Having had success with Alex's diet modification, and suspicious that Miranda was harboring some kind of similar issue, we had a panel run on her, only to find that she is allergic to cinnamon, blueberries, and coconut and palm oil along with all of their derivatives.
Do you know how much coconut or palm oil is in almost everything? Getting eggs out of Alex's diet was simple by comparison. Sarah's shopping takes her all over the region now, as Miranda is only slightly less picky than Alex about food, but is allergic to many more kinds of foods than he is. Processed foods make it almost impossible to avoid, so Sarah has gotten to be a wizard at making sure that Miranda has a perpetual stash of safe food. But she has yet to find a soft-serve ice cream anywhere that is safe. :( Both kids have shown substantially improved interactions with us, too. They are more self reliant, which brings new challenges as well as new benefits. (Benefit: They'll go scrounge for themselves when hungry or thirsty. Challenge: Miranda decided to be her own stylist in October and cut deep gouges out of her hair. We are very thankful to have a great stylist nearby who repaired it beautifully.) Both kids want to interact not only with each other, but with us, too. Both of them want us to engage with them as participants in recognizable adaptations of stories, scenarios or themes that they both know. If this all sounds excruciatingly average and unworthy of comment, that's because for other children, it would be. I never imagined that I would be looking up from the seabed below the surface and yearning for the breath of air that most everyone assumes is 'normal.' Sarah and I have spent our entire lives as outliers with one foot in the water, and most of the rest of us in the air. But at this moment, we are closer to experiencing a sea-level 'normal' in our children's relationship with the world and with us than we have ever known so far. This is both a blessing and a challenge to stay in the game and keep slugging, knowing that there are going to be other plunges ahead. We had other non-child related events bump through our world this year, some happy, some sad. Tom and Lorita Boyle have again been instrumental in keeping us from cracking up by coming out for multiple extended stays with us in March, August and November. This allowed Sarah and I to take a long weekend to Washington, D.C., to see the Terra Cotta Warriors of the First Chinese Emperor and stay in the Chester Arthur House B & B, which we highly recommend if you enjoy Victorian architecture as we do. In August, Tom and Lorita came and Tom and I started on a new shed that I completed in September, which bought us a hair more 'wiggle room' in terms of storage space. Sarah and I also went to the Pocono Mountains for several days before Tom and Lorita brought the kids up to join us. Alex and Miranda now have a definite idea of a 'vacation' as going somewhere else, and doing fun but unfamiliar things. And they like it, though I don't think they'd enjoy a continuous diet of 'new.' These respites give Sarah and I the brief chance to be both ourselves individually and as a couple, taking that momentary pause from being the parents. You savor every second when you know that your obligations have shrunk, even briefly, to a pinprick of their normal proportions. It makes you squint a little at the light and realize how long you've been in the shadows. I've learned that you can either cry at the necessity of returning from the mountain top, or you can affirm yourself for successfully survived the previous sprint through the valley. We're trying to do the latter for each other. We'll probably leave the Poconos behind for a while and do other interesting things, perhaps even rent a beach house next year. Speaking of the beach, Sarah made it a point to take almost weekly trips to Long Beach Island this summer with the kids. Neither Alex nor Miranda had shown much interest before in the beach, and we didn't thrill to the idea of trying to chase Miranda down a crowded beach. But LBI has some nicely low population beaches, and the kids were inclined to hang around because Sarah usually went in parallel with my sister Leah, and my nieces and nephew Grace (10) Collin (7) and Lily (3). Since Alex and Miranda think their cousins are cool, they stayed to play. Because of Alex's intense love of the water, both at the beach and the swimming pool, we are going to align him with the Special Olympics sometime this winter and try to take advantage of swimming lessons for special-ed as he comes up to the age where he can participate in competitions. We think Miranda would be a great candidate for Karate, with the repeated motions, and intense structure to the katas (practice forms) but we'll see how her continued development goes during 2011. Sarah was able to take a week off and go out to Southern California for a week in July and see her brother Brandon Boyle marry Piper Seeger and interleave their last names: Seelye. It was also Sarah's last chance to see her uncle, Mike Murphy, who died in November after an almost two year battle with pancreatic cancer. Mike had the opportunities that everyone wishes for: to not leave relationships undone, but to close them out properly before taking the ticket for the next leg of his journey where we look forward to eventually joining him. In June, my mother, MaryLee, began to have shortness of breathe and upon a full workup was told that she needed quadruple bypass. Her response? "Oh, rats." She went through the procedure in mid-September without even stopping the heart and was sent home for recovery early based on how well she was recovering. Two months after surgery, she was close to fighting strength again. Her summation: "Never again." The only fun part of the process was seeing the Intensive Care Unit's team's face when she said, "And here's my home care-giver...." and my father comes round the corner in his powered wheelchair with his trache in his throat and his skinny hands on the controls. Eyeballs bulged. Mom and Dad did fine, helped along by lots of assistive care from three churches: Hope UMC, where our family goes; Hope Moorestown, where Brian and Leah go; and the Orthodox Presbyterian Church where my mother is the organist. The OPC was worried sick that they would lose their organist, and since my mom isn't happy when she can't play, it is a mutually beneficial relationship. During the middle of Mike Murphy's death and my mother's quadrupal bypass, Sarah's mother, Lorita, was able to publish her first book, Bathsheba's Lament. Fans of her writing are a small but growing group and we continue to trust that God will use this book to bless the lives of many in the weeks and months to come. Come late August, the kids were sick of being at home, sick of being with mom, and generally just irritated by everything. Their wearing nature caused Sarah to realize that the shabby condition of our un-refinished Living Room was dragging her under emotionally. There aren't many physical things I can do to make Sarah's burden as full time mom more tolerable, but this was one I could make easier on her. So I spent September and early October planning and then tackled the project. What should have been a three week 'evenings and weekends' gig stretched to eight weeks as I was finally forced to address the weak joists under the house. (Four days working in a space the size of a coffin. Not recommended for claustrophobes. Well...not recommended...period.) Between that, and multiple illnesses sweeping through all four of us in the family, as well as forty year old wallboard that only demolition could have improved, it was an awfully big project to bite off just as the weather got cold. As of this writing, the room is habitable but not complete, as I have designed built-in bookcases that will finally let us consolidate our books from six free standing bookshelves down to two built-ins. Of course my shop used to build the bookshelves is presently occupied by the Beetle. Argh! Even unfinished, the living room is now a delightful haven of peace. But when the dining room needs done next year, I'm hiring someone to deal with the wallboard and popcorn ceiling while we leave town or something. Some projects exceed even my inflated belief in my own competence. Pretty much every change to this house since 2006 has been to consolidate space until we can move, which is still on hold pending bags of money falling out of the sky. In our house, every change or purchase has one of two justifications: therapy or respite. A house with one extra room over what we have now would provide just enough of each to merit moving, as the gridlock is getting worse faster than I can reconfigure the space to squeeze out more usable cubic feet. I should note that during the dark frigid hours of last winter, I performed a complete cosmetic refinish on the Beetle's engine, and again took Best in Class at the Litchfield, Connecticut Bug-In. It is amazing how easily the words 'complete cosmetic refinish' roll onto the page, but at the time, this project took well over 300 hours working 'as available' both in sourcing obscure parts (this is a historic restoration, not just a functional 'reconditioning') as well as teaching myself new finishing techniques that included designing and building my own media blasting cabinet. But as I mentioned last year, trophies demand trophy cases and we're out of room. All of these efforts are to raise the vehicle's value when we sell it in the Spring of 2011. My work environment is now quite tense: Another re-organization was announced mid-year, but then not enacted for four months, with everyone effected reverting to a sort of lawless 'Every man did what was right in his own eyes' in the meantime. This lag meant that when the other shoe dropped and the reorg became official, reporting lines had to straighten out, and responsibilities and authority recoupled. I keep waiting for a strategic direction and instead we keep getting committee meeting minutes...or silence. So I'm hanging on to the tiger's tail and trying to stay out of the way of the teeth at the other end. Normally I'm pretty enthusiastic about work. This year...not so much. Sarah I was very glad to have had a family membership to the Philadelphia Zoo this year and while the first few trips were with one child or both children and a helper, by spring we were able to go to the zoo, just the three of us, and have a lovely time. This fall we switched to the Adventure Aquarium in Camden because I felt the children were ready for a change and Marshall is so fond of sea creatures. I haven't yet tried an excursion with just me and the children there, but I have a lot more confidence about trying new things, just the three of us, than I did a year ago. I owe a great debt of gratitude to our dear family and friends (MaryLee, Leah, Tammy, Susan Hric, and Tom & Lorita) who made our frequent trips to the beach this summer possible. Alex and I are never happier than when we're swimming in the ocean, and Miranda has a deep affection for digging in the sand with her cousin Lilly or her buddy Ben, so we all go home blissfully happy. This kind of sustained parallel play, developing into interactive play, that was a watershed step for all of us. I did have a glorious week of vacation in California with my family to celebrate the occasion of my brother's wedding in July. I slept uninterrupted, I read a few books, I watched a lot of World Cup soccer and thoroughly enjoyed myself. I am so thankful to have a husband willing to give a week of his vacation so that I could take a week of vacation and have a fabulous time. It did make the decision to stay home for Christmas (instead of joining the rest of the family in San Diego) a lot easier to make. (Our theory is, that if we don't want to spend all day on an airplane with Miranda, no one else would either.) If you haven't yet noticed, I became a part of the FaceBook Family in April (ostensibly to keep up with my favorite High School students) and have enjoyed reconnecting with family and long-lost friends. I have also continued weekly updates on blog http://sarahboylewebber.blogspot.com/ inspired by Jen at Conversion Diary) and have almost reached the halfway point on the largest cross stitch project I've ever attempted. Since it is a gift for my sister-in-law, Stephanie, I may actually be able to hand-carry the finished project with me to California next Christmas, supposing we are able to go. Here's hoping. Remember, you can always see regularly updated photos of us on our web album: webwrench.smugmug.com. I continue to spend Sunday nights with the High School students at our church and love my work with them. They are a constant encouragement to me, even when, officially, I am there to encourage them. I love writing them postcards during the week, although Miranda often tries to "help," and my promise to pray for them daily is a great motivator for me to spend my days in constant prayer. At least, that continues to be my goal. Marshall: We're emphasizing a push toward stepped up evangelism (in the Wesleyan, osmotic model) and growth running five worship services on Sunday morning. (Two for children, three for adults, with three running at 10:30 concurrently.) The building isn't any bigger, but we've broken the 500 barrier in worship on a Sunday and are out of parking space. You can really feel things crackle and I am thrilled that our family gets to play a part in this amazing outreach, both as servers, and as those being served. Can 2011 top 2010 for lurching change? The only way to find out is to wade into the swamp with your water-wings on and hope for mosquitos...not alligators. Peace,
Miranda and her cousin Lilly Rykaczewski hang out on Long Beach Island. (Their relative sizes are pronounced in this picture; they're only a nine months apart, but Miranda is a giant and Lilly is petite.) - July 2010
Miranda and I (along with the rest of the family) take in the Bushkill Falls while on vacation in the Delaware Water Gap National Park. - August 2010.
Miranda seems to have the natural Webber gift for posing. Would you believe I took this picture at Tamiment Lake just minutes before sunset with my cell phone? Yea. Me neither. - August 2010
The Beetle's now sanitary engine compartment, finished during winter/spring. It is not enough to just 'work,' it has to be 'correct and complete.' Examples include the computer diagnostics port (seen top left) which was added in 1972, the first of its kind. Even items like the steel intake manifold clamps were aluminum oxide blasted to remove corrosion and rust and then hand polished. You can even see the little VW logos on them now. In November, I competed in a Corvette sponsored show and took 6th in a field of 50. There were some very angry muscle car owners at the end. - November 2010
I am having a hard time believing 2010 is coming to an end. It seems only yesterday I was marveling at how strange the date looked when I wrote it down and now I have to start thinking of 2011. As life always is with young children, it was a very full year. Most weeks, my life is swallowed up with managing the household and keeping the children going to and from school and various medical appointments. Most Friday nights, we sit around at home recovering and planning even fuller weekends, trying to cram the unfinished week into the only two days when there are two adults in residence.
Grandpa Tom and Alex try to boost my vintage VW. - August 2010.
Alex and Miranda as The Cat in the Hat and 'A Princess' (species unknown.) - July 2009
We're still here. Barely. - July 2009
We've also seen some fantastic changes at Church, culminating in the 20 Ways in 20 Days campaign that we started. The church's 20th anniversary was on November 20th and it is always tempting to throw yourself a party. We decided that this was contrary to our mission: "Following Christ for the Sake of Others." So instead, we encouraged everyone to do things for others, both in organized groups (an army of leaf rakers descend on a housing development) and also in individual ways. The capstone of the program was to raise $20,000, not for the church, but for other missions that we support in the region. We must have done something right: with matching grants, we came in at $31,000 toward other missions.
Marshall & Sarah Webber
Alex and Miranda