Polished

My meeting at the church went well. The two ladies were already there when I arrived, and the one I am less than comfortable with took Erik by the hand and left me alone with Marla, the woman who volunteered to assist our family on Sunday mornings. She was a middle-aged woman with kind eyes and blond hair that threatened to touch her shoulders but flipped up at the ends instead. She listened to all that I had to say about my concerns and frustrations, looking at me thoughtfully through her glasses and nodding when appropriate. I told her that I would like Erik to attend the class with the other children his age if possible. My new author-friend Barbara told me to share the 60 Minutes DVD on Williams syndrome with others to explain our situation, so I produced it from my purse and handed it to her. I expressed our desire to attend church just every other week to start, and she instructed me to call her on Saturday nights to make arrangements. After our meeting, the three of us walked Erik down to the nursery, which was empty, and Erik played with some toys, placing his hands over his ears from time to time when encountering something unfamiliar that could potentially emit a loud noise. When it was time to go, he melted down in the hallway once the ladies rounded the corner. I was forced to carry my kicking, protesting boy out the front doors over a sheet of ice to the car.

I would be lying if I said Erik's behavior was improving. His tolerance for frustration or being told no is virtually nonexistent. Toilet training is practically impossible, as he refuses almost everything I offer him or suggest. By Friday of this week, I was millimeters from tears all day. Brian and I have talked about our reaction to his actions, and we both agree that using time outs and/or ignoring inappropriate behaviors, depending on the situation, seems to work best, as he is simply seeking attention. The time I spent with him Friday consisted of mostly one consecutive tantrum. He has even begun slapping himself when he is frustrated, and watching him do this saddens me beyond belief. Telling him to stop, of course, only intensifies the behavior, as he wants a reaction from me.

This morning I awoke with a headache. I called Lisa, my neighbor, and took her up on a previous offer to visit a nearby salon for a pedicure and eyebrow waxing, even though my heart wasn't completely in it. By the time I prepared to leave, I found myself more enthusiastic about our outing. We arrived as the place opened. This was a pleasant turn of events, as wearing flip flops in 40-degree weather is not one of my favorite pastimes. We ordered deluxe pedicures with leg massage, choice of aromatherapy, and hot towel wrap, although I was concerned that going from such an incredibly tense state to one of pure relaxation could potentially cause me to wet my pants in a public setting. Unfortunately, I am so horribly tense that I didn't come close to achieving the level of relaxation I was anticipating. It was quite pleasant, however. I chose orange-scented bath salts for my feet, as the scent of citrus always lifts my spirits. We turned our massage chairs on high, and the short man with bulldog-like features waiting on me began massaging my feet. I enjoyed his friendly banter but was horrified by his complete and total honesty. My pedicure ended up costing an additional five dollars because he strongly suggested some sort of acid peel for the calluses on my feet. When he saw my fingernails, which I eventually forgot about hiding, he recoiled, suggested a manicure, and then changed his mind, stating that perhaps acrylic nails were the way to go for me. I told him I would let him take care of my hands at a later date, as the top of my thumb is currently missing as the result of an unfortunate onion slicing accident. This is what happens when one is half tomboy, half girly-girl, I suppose. Lisa, of course, giggled with glee at his observations about me. I received a minor chemical burn from acid splatter on the back of my right calf, but my feet are now softer than a baby's buttocks. I requested the usual crimson polish for my toes, and he carefully slid my flip flops back onto my feet over my glossy nails.

We were then escorted by a tiny woman wearing pink sweatpants and plastic, leopard print heels into a very messy back room in which there was a massage table with some less than clean towels lying across it. Lisa, a veteran at this particular establishment, stretched out on the table, and I stood behind the woman in the tiny space while she applied wax, pressed on strips of muslin, and ripped them off with glee. In fact, she turned to display what she had removed from Lisa's face and said, "OOOOOH! So hairy!" Lisa, not a quiet woman by any means, huffed and said that half of what was smeared across the strip was eye makeup, not hair. The woman giggled and shook her head. I laughed loudly. Revenge is sweet. When my turn came, the woman went to work, efficiently ripping the excess hair from above my eyebrows. I was thankful I had taken Excedrin for my headache before leaving the house, as the last time I had my eyebrows done, I looked like Rocky Balboa after a nasty fight within an hour of leaving another salon. We finished the afternoon at a seafood restaurant. I sat in front of a plate of fish and chips, not caring how many points I was consuming because my pounding head demanded something greasy tout de suite, and a cold, sweating glass of chardonnay poured from a box behind the bar.

Tomorrow's adventure: Church.

Slice of Life

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

-- "Halleujah" Leonard Cohen (sung by K.D. Lang)

Yesterday went fairly well, although I collapsed at the end of it and was in bed by 7:30 with a headache and apparent exhaustion, as I couldn't keep my eyes open anymore. Does anybody know who was voted off the Biggest Loser last night?

Erik attempted to refuse to go to school yesterday. He yelled, "No school! No backpack! No!" I gave up on brushing his teeth, and he stomped his feet, slammed doors, and followed me around hitting me as hard as he dared. I couldn't help but think this was like spending a morning with Helen Keller at the beginning of her education, except Erik did a much better job of locating me and cursing at me than she probably ever could. After a time out failed to work, I began ignoring him at the point where I thought I was going to snap and stuff him into Gracie's car carrier in order to transport him to school. I took a deep breath and turned on the Today Show. In the middle of his outburst, K.D. Lang began to sing one of the most beautiful songs I have ever heard, an older song by Leonard Cohen called "Hallelujah," and Erik stopped in his tracks. He stared at her performance and was frozen the entire song. He was in a complete trance. I stopped what I was doing and sat on the floor behind him, putting my hand on his back to let him know I was there. He very slowly backed up without breaking his gaze and lowered himself onto my lap. It was a little moment of peace in our house, and it was wonderful.

After school, Erik was dropped off in our snowy driveway, and we made complete dorks of ourselves waving wildly at Jeff, the bus driver. We ate lunch and headed to the orthopedic building at the hospital. I drove there a few minutes early to catch my neighbor Lisa working at her coffee cart in the lobby. She dropped everything she was doing and gave Erik a tour of the lobby, including the impressive but silly manmade stream that begins with a waterfall cascading over a collection of manufactured boulders and travels the length of the registration area in a long, rocklike enclosure. The scent of wet pocket change and struggling algae brought back memories of a fountain in a mall we used to visit in the valley when I was a child.

Erik refused to ride the elevator to the second floor, so the three of us went up the stairs and found the orthotics office. Three men emerged from the back workshop as we entered to make small talk, and Lisa introduced Erik to the ones that don't know us, beaming with pride. She marveled at the wall lined with various orthotics, most of which look as if they are for sports injuries. The bottom shelf housed a collection of braces identical to Erik's with foam pads and straps in cheerful colors.

Lisa left us to tend to her customers, and Erik carjacked a toy monster truck from the waiting room to take into the back room with Jeff, the orthotist. Erik has not been in this room for almost a year and a half but knew exactly what had occurred here with the screaming saw used to remove the materials they used to cast his legs. He began to panic, but we convinced him to join us, and I pulled the legs of his sweats up and took his shoes off so Jeff could see how tiny his braces have become. I'm no expert, I told him, but I do believe Erik has outgrown his orthotics.

If there was any doubt in Jeff's mind that I was telling the truth, one look at Erik's long legs capped with the tiny, toddler-sized orthotics took care of that. He called Erik's PT to see if he still needs them, and she told him she would reevaluate him at our next session. In the meantime, Jeff replaced the Velcro enclosures around Erik's legs so they no longer come undone every 30 seconds, and we were free to go. I made Erik ride the elevator but held him in my arms and soothed him through the rude mechanical buzzes and dings that made him jump and bury his face in my shoulder.

Possession

Williams syndrome (also Williams-Beuren syndrome) is a rare genetic disorder, occurring in fewer than 1 in 7,500 live births. It is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers, coupled with unpredictably occurring negative outbursts; mental retardation coupled with unusual (for persons who are diagnosed as mentally retarded) language skills; a love for music; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia. The syndrome was first identified in 1961 by Dr. J. C. P. Williams of New Zealand.

(From Wikipedia)

The beautiful photo of my baby above was taken by my mother last weekend while Brian and I were away. Brian and I were talking last night, and we both seem to be on the same page regarding Erik's rapidly changing behavior and his frightening angry outbursts that seemed to begin overnight. For example, if I ask Erik to do almost anything at all, there is often a fierce battle that follows. Yesterday I was kicked in the stomach while I tried to brush his teeth and then later (twice) while changing his diaper. He looks directly into my eyes and almost smiles at me when he strikes at me and these outbursts occur. This behavior is very definitely not Erik-like, and I find it extremely upsetting. I have adopted a deliberately cool demeanor when it occurs and simply put him in his room for five minutes when it happens, but I'm not sure if this is the right thing to do or not. Yesterday when he was asked to find the car at the stables, he went face down in the parking lot and refused to move in front of everyone. Unfortunately, he becoming too heavy to carry very far! Luckily, most of that particular incident came out of being stubborn, not angry, and had a very normal (albeit frustrating) feel to it. His behavior became more aggressive after I carried him to the car. I worry about days when he suddenly seems very angry at me and the world without any warning at all. You may ask why I need to sort out what behaviors are related to my child's syndrome and what are of the normal 2-year-old variety. My answer to this question would be that I need to confirm that these outbursts are WS related because they are heartbreaking. I need to know my own child doesn't really hate my guts. I need to confirm that these are common WS issues that can be successfully dealt with and are not the result of something I did or didn't do. I need hope and reassurance. Pretty simple.

We agreed we need some new techniques and tools to help us cope with this worsening problem, and I found the book Understanding Williams Syndrome: Behavioral Patterns and Interventions by Eleanor Semel and Sue R. Rosner on line. Hopefully, it will answer most of our questions and promises solutions to behavioral problems common in children with WS. I'll post my input on it when I'm finished. The following is taken from what Ursula Bellugi had to say in the foreword in the book. That was the most compelling selling point for me, as I have great respect for the woman.

...the first comprehensive source book on the behavioral patterns of individuals with Williams syndrome. Not only does it summarize and analyze the research literature, it...provides problem-specific interventions, general guidelines for addressing problems...and innovative techniques for developing the potential of many individuals with Williams syndrome....combining research findings with real-life examples, clinical observations, and anecdotal reports...[it] goes beyond generalities by describing variation among individuals with the syndrome...as well as subgroups...[The authors]...are the ideal people to pull these strands together, both with respect to research and to intervention...

—Ursula Bellugi
Cognitive Neuroscience Laboratory, The Salk Institute