System Failure Imminent (#2)

About 10 of us went out for breakfast yesterday morning before the local boat and RV show. Erik did amazingly well, sitting between us for an extended period of time while we sipped coffee, talked, and laughed. It was incredibly relaxing. We shared our omelet, slabs of toast, and cinnamon roll with him. I eventually walked him down to the video arcade at the other end of the restaurant to get our pinball fix, and then we loaded in our cars to drive to the next town for the show.

The remainder of the day was a different flavor. At first, things were great. Brian and I briefly got to explore the massive collection of travel trailers parked in a field under the blazing sun. These ranged from the ridiculously expensive, including models with gas log fireplaces, flat screen televisions, ATV garages, and bars, to a bathroomless, lemon yellow, tear-shaped model that could be towed behind almost any vehicle. When we got to the lineup of more reasonable models, it was difficult for me not to think about the government trailers that materialized after Hurricane Katrina. Packs of salesmen roamed the grounds, popping up out of nowhere and frightening me from time to time as I examined cooktops and commodes.

Erik became increasingly difficult to control. I was horrified when he completely ignored my shouts to stop before he ran over an expanse of parking lot after spotting a forklift. The beginning of the end was when he discovered an open space studded with gleaming all-terrain vehicles of different sorts -- bucks, and quads, and motorcycles. Oh my. He sprinted toward them without a second thought. He then flitted from vehicle to vehicle at a ridiculously frantic pace. I tried to snap a decent photo of him, but he was in constant motion, making it impossible. Brian and I had to laugh at his obvious delight. For some reason, he would lie down on the grass and insert the top of his head into each recessed hubcap. He bent at the waist to inspect each tire. He talked to them as if they could understand him. I even overheard him mumble, "What a beautiful quad."

He was in absolute heaven.

I love to do special things for my son. Knowing there would be vehicles he would enjoy at the event was the major reason we attended this show. Lately we have put a lot of thought into things we can do with him to get him out and about. The problem is, however, we have to cease doing these things at some point and go home. This always results in a major Erik malfunction, and we were about to experience the worst one in history. Activities as simple as taking him outside in the yard always seem to end with one of us carrying or pushing a kicking, screaming boy through the front door, making me wonder if even our insignificant outings are really worth it. It may seem like a small price to pay, but after this occurs about three thousand times in a row, it gets really frustrating. You can't kneel down to his level and reason with him when he's this upset. I guess that all I can really do is ask the folks who don't wear our shoes to hesitate before they cluck their tongues and shake their heads in judgment seeing a parent carrying a kicking, screaming child to the car. They just might be doing the very best they can. There are some days I am just not up for his rage, and we remain inside the house. I fully admit it.

As Erik was forced to ride on Brian's shoulders away from his beloved ATVs, he bawled and screamed. When that didn't work, he tried manipulation, begging Brian, "Let go of me, please." When that failed, he went back to screaming and crying, making the remainder of our time browsing impossible to enjoy. Our voices both took on a raised, barking tone, which only seemed to upset Erik more. We were officially fresh out of reasonable ideas, and Erik was miles beyond reasoning at all. Brian carried Erik back to the Jeep, and I went to inform my friend that we were leaving. As we drove out of the fairgrounds, Brian and I calmly explained to Erik why we had to go home, but I can never determine if he really comprehends what we're saying or not. I would think that if he did, his behavior might change, but it doesn't seem to make any difference at all so far. However, we faithfully continue our explanations, hoping some of it will eventually sink in.

The rest of the day was slightly better, but Erik remained "off," screaming "NO" at us both with great gusto and refusing to do anything we asked him to do. He spent time alone in his room with each outburst. The whole outing just seemed to rock his world for the rest of the day. After Erik took a good nap, Brian decided to take him to the store for furnace filters in the evening. Erik did well, even without the confines of a shopping cart around him.

He was back to his old, Erik-y self.

I love doing special things for Erik and will continue planning them, but there is definitely a price we end up paying. We just make sure we're up for our punishment afterwards, which hurts my heart more than a little.

On some days, it's just simply not worth sacrificing my sanity.

Heart-Hangover #1584

Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

-- "No Rain" (Blind Melon)

One of Erik's friends celebrated her 3rd birthday this weekend. We had a fabulous time with our friends at the party. I enjoyed getting a good dose of the sparkles, pastels, and glitter that come with having a little girl around. The snow came down in big, gorgeous flakes all afternoon, and it was very cozy inside. Erik sang "Happy Birthday" with as much emotion and energy as Whitney Houston singing the national anthem and clapped his hands together when the song concluded. He allowed me to steal frosting from his piece of cake, and in return I let him eat in peace without my fussing over him like I usually do. He is really enjoying his own friends now and asks about all of them. I no longer have to listen to him begging me to turn the car around when we are on the way to visit children his age. He was even interested in the opening of presents and was delighted to see a purple monster truck emerge from under layers of wrapping paper. He staged a miniature carjacking and took off with it for the nearest tile floor.

One day after the party, the familiar heart-hangover set in once again. Although it is much easier for me to attend children's birthday parties than it used to be, my response varies greatly these days. While I do just fine sometimes, on other occasions I feel like collapsing the next day. Some people are afraid of the dark. I just happen to be afraid of balloons, buttercream, and birthday candles. Last night I asked Brian if he had difficulty watching Erik interact with everyone, and he very quietly said yes.

That made me feel a little better.

Erik gets in faces, whether they are familiar to him or not. He knows no strangers. He says hello hundreds of times to everyone for at least an hour, which often generates slight irritation from other children. It shows on their faces, which I suddenly feel like slapping, although I suppose I can't blame them. This now keeps us from taking him to the adult functions we would have taken him to when he was younger. While everyone is generally very kind and seems to find Erik's personality delightful, it's hard for me to hear the laughter that goes with taking him anywhere. And I hear it EVERYWHERE. I know they aren't laughing AT Erik, really, but my mama bear protectiveness kicks in each and every time, and that's exhausting. I admit that sometimes I wish he could just blend in a bit. When he saw my friend's father come through the door at the party, he yelled, "HI, SANTA!" The room erupted in laughter, and I wanted to crawl under something and die.

Although we often have to intervene when he is completely inappropriate with a stranger or someone who might find his behavior uncomfortable or disruptive, it is now necessary to let him go in a safe environment and watch what happens, even if it makes me very nervous. It's incredibly difficult for me to do. I was a shy child. I did my best to blend in and not do anything to draw attention to myself unless I was completely at ease. Erik is my polar opposite that way, and it terrifies me. He is always completely comfortable around people. His personality is very unusual. His behavior is even more unusual. I guess "blending in" just isn't part of the plan for Erik.

It's obvious my kid couldn't hide his (halogen) light under a bushel if he tried.

So, after binging on cookies and opening a bottle of good wine by myself yesterday, I suppose I feel better. There's nothing like a sloppy, pathetic session of feeling sorry for myself and letting the emotions ebb and flow. Facing what I feel head on seems to make the next birthday party a little easier.

While I was writing today, I thought of the "Bee Girl" in this music video. I haven't seen it for years. I found it, and it was just what I needed. Watch the whole thing, dance, and enjoy.

Roller Coaster

Yesterday was a roller coaster ride. At five in the morning, Gracie-Cat screamed bloody murder for no apparent reason, as she tends to do, and Erik promptly awoke two hours early, pooping his pants in the process. I heard his voice and winced, hoping he would return to sleep, but he was soon lying on his side on his bedroom floor, putting his lips to the space between the bottom of his door and the carpet and talking as loudly as he could about nothing in particular so I would hear he was awake and retrieve him. He still waits in his bedroom for one of us to open his door in the morning, and this is how he prefers to get our attention.

Erik has two settings: Unconscious and hyperactive. After I changed his diaper, he bolted from the room. I tried to get him to settle down and lie between us in bed. He even took off and returned with his baby blanket and Stinky Dog as if he had entertained the same thought, but he just couldn't lie still. He laughed and rolled around on the bed instead, enjoying our groans of pain as he elbowed us in the eyes and sternums, finally giving up on the idea of a quiet moment of family closeness. Instead, he ran off to play with his collection of monster trucks.

By the time I needed to go to the grocery store and think about working later in the afternoon, Erik was rubbing his eyes and morphing into the personality I fondly call Psycho Baby. We made it to the store, but he kept grabbing at my sleeve and looking at me intently, seeming to silently plead we go home. He is usually happiest at any store full of people, but he was obviously miserable. He even stopped saying hello. Red flag. I knew I was in trouble.

By the time we arrived home and I was attempting to put away my purchases, Erik was spinning completely out of control. I knew his blood sugar was dipping and he needed food, but he was really raging. I managed to get him in his chair, but he flailed at everything in his reach and kicked the underside of his table with his incredibly long legs, growling and screaming, "No!" He kicked me. He hit me. He slapped me. He refused anything I suggested. Even cookies. I reminded myself that he was horribly tired and frustrated and that losing my cool would only fuel the fire. However, after a morning of time out after time out and being assaulted repeatedly as I tried to soothe him during similar episodes, I was plain exhausted.

He continued to yell, flap his hands wildly, and kick, shaking the table. He was absolutely inconsolable. He had returned to that distant place he was once trapped in when he was tiny. The place my words do not reach. The place he can no longer feel my touch. That place that sucks him in and leaves behind an empty, child-shaped shell.

It was then that I snapped.

If molten lava could flow from my mouth at this point, it would have. I was filled with rage myself. I was furious at the universe. How much could one person take? I had enough. A four million decibel high-pitched, scratchy screech suddenly came from my lips. It didn't even sound like my voice. My head snapped around from where I stood in front of my neatly stacked rows of canned diced tomatoes, and I looked at my child who seemed to be channeling the devil himself.

"ERIK! THAT'S ENOUGH!"

His eyes widened in shock. Wider than I have ever seen them. My sweet boy was instantly present, pouring into his own body like liquid soul and pushing the raging thing I saw moments before far beneath the surface. His face reddened. His bottom lip swelled from his face, and hot teardrops began to fall on his crumpled, tortured placemat, which, amazingly, was still atop the table. The cry was silent for a moment, and then he wailed as if I had just profoundly injured him. I suppose I had done just that. I felt two inches tall.

I successfully pulled my baby back from the place he goes, but I didn't feel good about it. I wanted to cry, too. Instead, I went to him and held him until the tears stopped. It didn't take long. I whispered to him that I was sorry I scared him and that I loved him. I rubbed the bumpy line of his spine with the palm of my hand and put my face in his soft hair. He was easily soothed, and I began to offer him a bowl of fruit and some crackers with peanut butter. He quietly devoured them as if nothing had happened, and I picked up the phone to call Brian to confess what I had just done.

After Erik's three-hour nap after lunch, he was a new boy. We played and cuddled. We were alone in the house for the evening. I made a pizza and turned on the first Oregon State game. After dinner, I placed Erik in his bathtub and hauled the vacuum out from the closet. Erik begged me to put the vacuum away, but I was easily able to assure him that it wouldn't be too loud and used it five minutes at a time, checking on how he was doing with it, turning on the bathroom fan and closing two doors between us. He did fine. When the floors were vacuumed and mopped and there was nothing to do but sit on the couch, enjoy the game, and listen to the happy boy noises coming from the bathtub, I did. I talked to Erik as he played. I kept asking him if he wanted to get out, and he told me "just a little longer" or "five more minutes." I laughed and told him that was okay.

Erik then had another surprise that would instantly erase the ugliness of the day.

His bright voice said, "Mama!"

I replied, "Yeah, Erik? Are you ready to dry off?"

Erik repeated, "Mama!" He then giggled, like he had a secret.

"Yes, Erik?"

He said, "Mama! Mama! Mama! Mama!" He continued to chuckle.

I found myself giggling and asked, "Yes, Erik? What do you need?"

He said, "Come here, Mama."

Now my eyes became as big as saucers. I sat in absolute shock. I hadn't realized it before, but Erik has never in his almost four years asked me to "come here."

Not once.

I got up quickly and stood in the bathroom door. He smiled up at me and began to do a dorky little spin in the bathtub on his hands and knees. He was obiviously showing off, and he told me how fast he was. I hadn't realized it before, but he has never shown off for me. Not like this.

Not once.

It was a glorious moment of NORMAL. A smile spread over my face, and my heart ached at the same time. How could I feel happy and sad at this at one time? Seeing the pure joy on his face after such a trying day and realizing we had just reached another little milestone most people take for granted, though, I was pretty certain of one thing.

I was mostly happy.

Switchboard SNAFU

As I scooped up our lunch dishes from the kitchen table, Erik disappeared around the corner into the living room. I suddenly ceased what I was doing and noticed the house had taken on that deathly silence all parents know indicates that their child is in the middle of doing something irreversible and evil, like flushing the contents of your wallet down the toilet. In fact, the last time I experienced this stillness was when Erik uncapped a black permanent marker and decorated the rug in his bedroom with a series of gigantic squiggles that would have brought a tear to the eye of any talented contemporary artist. I'm no artist, but his work certainly threatened to bring tears to my own eyes. For different reasons, of course.

As I stepped into the room, I saw Erik sitting on the couch. He looked up at me and gave me that crooked, Dennis the Menace smirk at me that he does when he is doing something he knows he shouldn't. He held my cell phone in his palm, and it was open. He was pressing buttons on the keypad. I loosened the thing from his viselike hands, and he instantly began screaming "NO" and slapping my legs at the same time. The display read, "66666666666666." Of course. As I began to walk away with the thing trying to figure out just what he had done to lock up the display, I heard a wee voice yelling, barely audible under the bilious din emanating from my furious son, who followed me like a tiny, pissed off tornado. The voice was coming from my phone. Maybe he had dialed the devil after all.

"HELLO?"

"HELLO?!"

"MA'AM?!"

"HELLO!"

I placed the phone to my ear and found myself talking to a 911 dispatcher. Apparently, her knickers automatically bunch themselves into a giant, angry, crotch-splitting wad when you dial these three numbers in a row for no good reason. She bitched me out accordingly and instructed me to take the phone away from my son. Uh, okay. I felt my face flush and couldn't decide if I was more angry or embarrassed. On top of everything, Erik continued to scream at me, follow me around, and try to topple me over, so I could barely hear her. I just said I was sorry as loud as I could and snapped the damned thing closed, cutting off the leprechaun-like voice admonishing my parental stupidity. I'm surprised CSD didn't show up five minutes later.

Oh, sure, I bought Erik his own cell phone when he started stealing mine. It's really darling. It's red and blue and makes a funny camera sound if you push the correct button. However, it only dials Mickey Mouse, not real people, and Erik is beginning to suspect that he is talking to a recording. Erik doesn't even really know who Mickey Mouse is, as I consider Disney a tad too corporate for me these days. Besides, we kill mice around here. Actually, now I think about it, when emergency personnel get excited or agitated enough, their voices do reach that hilarious, sky high octave and almost sound like Mickey Mouse. However, I definitely did not hear adorable little things such as "Hot dog!" or "Would you like to come over to play with me?"

During my research after this embarrassing incident, I discovered that no matter how I set up my cell phone, there is a hot key that will connect me to the 911 dispatch center that is impossible to lock. What's ironic is that I couldn't tell you what it is, as they neglected to include that in the manual. I could be lying on the floor in a pool of my own blood the size of Lake Michigan and would have no idea how to use this "hot key" or where it is located. I would expire in a matter of seconds, but before I blacked out, I would likely get Erik's attention, point to the phone, and plead for his help. He would probably say, "No, mama, you said not to touch that phone, and I wouldn't dare disobey you."

A girl can dream, can't she?

Acid

Sometimes it seems as if my child is full of acid.

When Erik was an infant, long before we had heard of Williams syndrome or knew that stomach acid was constantly gurgling up his esophagus and burning him from the inside out, he always smelled like peppermint to me. He had red, splotchy burns around his mouth. He often pulled off my nipple, arched, and screamed in agony before he regurgitated everything I had labored to feed him. Everything was so difficult back then compared to the other mothers I knew, and in the dead of the night with my screaming infant, I couldn't help but wonder just what I was doing wrong.

For a week now, the skin on his bottom has broken down into wide, shallow ulcers from a bout of new intestinal problems. It looks as though he is burned once again. His symptoms are only now beginning to improve, and the nauseating scent of the greasy zinc oxide cream I smear in a thick, white layer over his skin seeps through his clothing and into the air around him. The boy simply can't seem to form a decent callus anywhere on his body. The skin itself does not seem to know how to thicken, and his toes still leave bright crimson stripes of blood all over the floor if he wears each layer of skin over them away by crawling after his toys. In fact, there is so much blood sometimes that when I moisten it with a mop, I can detect the faint scent of iron, and my stomach lurches.

This week he saw me cry for the very first time. He seemed surprised and a little frightened by my tears. This occurred after he kicked me in the chest for the fourteenth time that day as I struggled to hold him down in order to do the everyday things mothers do with tiny babies. However, he isn't a tiny baby anymore. Before I knew it, the sole of one of his large tennis shoes flew up and thumped me squarely in the breast, and the dull pain traveled all the way to the center of my heart. To an airless, dark space I no longer visit on a daily basis and have worked to seal off the majority of the time in order to dam up the river of the tears that used to come every day. We were on our fifth hour of nonstop tantrums, and I was worn down.

I am trying so very hard. I really am. Every little thing during the day is such a giant production. I constantly stand next to him and cheerfully coach him step by step how to pick up his toys, lie on the bed so I can change him, walk in 10-yard segments to the car, and even chew a sandwich. I celebrate every accomplishment, knowing that progress is snail slow but will come with time. He does very little voluntarily, regardless of the consequences, and I still must pick him up and carry him, ignoring the way he strikes out at me and trying to remain perfectly calm without losing my mind or throwing out my back. Hearing the word "no" sends him into angry orbit, no matter how softly it is spoken. He screams at me all day, even when he is not close to being upset, and continues to throw tantrums, which, admittedly, have only been intensified this week by his horrible discomfort.

This time I quietly turned away from him, closed his door, and walked around the corner into the kitchen. I sat down on the carpet, let myself slump over to rest my elbows on my legs, and began sobbing, covering my face with my trembling hands, feeling too exhausted to tread water in this ocean anymore. I finally picked up the phone and called Brian, not knowing what else to do. He came home early and confirmed my fears that things are definitely getting worse. We both know that it is important to be consistent and hold the course, and we know that time will bring us all some relief.

For now, though, sometimes it still seems as though my child is full of acid.

Make It Stop

CLOUD: Erik threw a series of rage-infused tantrums lasting a record-breaking two and one-half hours last night. He tried to break my things, flapped his hands in the air, hit us, and pushed his food off the table.

SILVER LINING: My boy is consistent and has stamina!

In fact, his behavior was so volatile that we put him in his room to avoid a volley of tiny but stinging bitch slaps and to calm him down. When it was time for Erik to go to bed a short time later, we quickly formulated a plan. I called it our own version of "shock and awe." Brian took one door to his room, and I took the other. We burst through each door at the same time, singing ridiculous songs, blowing bubbles, and providing more entertainment than Barnum and Bailey ever dreamed possible. Erik looked very confused, which cracked me up, but we had him in bed wearing pajamas with his teeth brushed before he knew what had happened. He was asleep shortly thereafter, so I am assuming exhaustion played a large role in his behavior.

Tantrum #1578

Random Thought of the Day: Movies I will never watch again include Forrest Gump and Happy Feet. My heart remains much too raw.

The sun is shining, and it is almost hot outside. It is hard to believe we had an inch of snow on the ground less than a week ago. Erik spent quite some time outside today with both of us. As I sat under one of Brian's baseball caps behind a pair of dark sunglasses to shield me from the sun, I almost finished another book. If it were not for the threat of my fair flesh spontaneously combusting, I would have finished it. Erik's neck is already beginning to pick up a hint of a suntan. He didn't get that gene from me.

Erik had the worst tantrum yet last night. It lasted almost an hour. Of course, we were completely alone in the house. It included nonstop crying. Rivers of snot snaking down his face. Trying to topple my bar stools over. Slamming his door over and over, screaming, "No door!" Refusing anything he loves. Pushing me. Hitting me. Being completely inconsolable. This all stemmed from me telling him he could not have a bath until he had eaten dinner. He was fourteen kinds of pissed off. It became so completely ugly that I began to lose my temper. I felt myself slip. I had to shut myself in my own room to regain my composure. Finally, I stripped him of his clothes and placed him in a warm bath, wondering if perhaps he was coming down with something. I went around the corner and sat down on the couch, listening to his sniffles subside and his charming babbling begin. He talked about how nice the water felt and began speaking loud enough for me to hear, starting up a friendly conversation. While I felt like a heel for giving into his demands, I felt the only other option was me completely losing my temper and saying or doing something very inappropriate. I put a tray of french fries in the toaster oven, which we enjoyed after his soak in the tub. Finally, I crawled into bed with him to read a couple of books and cuddle, which delighted him to no end. I held him and told him that I loved him. He thanked me as if he had been happy all afternoon and asked me to give the glow-in-the-dark planets suspended from his ceiling by fishing line a tap so they would swing above his bed when I turned off the light.

I tapped each planet, rocking the entire solar system, blew him a kiss, turned off his light, and shut the door.

Softly.

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.

Stick a Fork in Me

Warning: The following is venting. I don't want to talk about it outside of this post. In fact, I may turn my comments off. If I do not vent, my head will explode like one of Gallagher's watermelons. This remains my online journal, and I have never nor will I ever keep anything from it that comes to my fingers as I type. If you feel like calling me or e-mailing me, please make sure you have a good diet cocktail recipe or hilarious joke ready. I love all of you. I'll be just fine. And thanks.

I refuse to lie to you. The last few days have been pure hell on earth. In fact, I am crying at this very moment, so you will have to excuse a possible lapse in my writing ability. We are snowed in today and have been all week. This will be at least the fourth day of school Erik has missed because of weather-related decisions that people living here for an entire eight minutes have made. Has anybody seen snow before or what? In fact, our city already spent the money allotted for snow removal this year on other things because we haven't had snow for a couple years, so they assumed we would not again this year. Freaking brilliant. Go home, you posers. All of you.

I am seeing some very disturbing things happening in terms of Erik's behavior. He is frustrated at being snowbound and today asked to leave the house, specifically in my car, so we could see my parents. I had to tell him no but that this might be possible tomorrow. I have been punished for this all day. I have been kicked in the stomach. I have been slapped. I have been pinched. I have been yelled at. He has thrown food that he likes all over the floor. He has destroyed his room. He has refused to do anything I have asked him to do. I had to hold him down kicking and screaming to get clothes on him and brush his teeth. He has again refused the things he loves just for the simple pleasure of telling me no. There is nothing I can do for him except take him to see anyone besides me, and he has made that very clear.

You know, this wouldn't be so terribly bad if it didn't happen hour after hour, day after day this week, but it has, and I am at officially at the end of my rope. I have read in the resources I have that this can be classified as typical WS behavior and that if I give Erik slack in terms of his outbursts that he will be "socially rejected" in the future (as if he isn't already, anyway). No pressure. In fact, I have read that a variety of studies have reported that 52% to 85% of WS children are classified as "potentially disturbed," although I am guessing there is another more politically correct term now. I have been warned about a "low tolerance for frustration," and I can see that very clearly now. I try to do the correct things as a mother, treating Erik like I would any other child and focusing on the positive, but I'm certainly not perfect, especially in this kind of uncharted territory. What sucks is that no matter how I respond to him, he continues the same behavior--kicking, slapping, and growling, punishing himself by refusing things he enjoys in order to hurt my feelings, although I try not to let it show. He yells all of the things I have said at himself within earshot and even seems to come up with things I have never said at all (Stop it! Right now! Don't touch that! Go to sleep! Don't do that!). All are negative things, despite the fact he consistently gets praise and love daily. I tell myself that I need to continue being consistent in love and discipline, even though it doesn't seem to be working at the moment, hoping that it will eventually set into his brain that I am not weak or kidding. But, God, I feel so weak. There are weeks where I have moments alone in which I find myself looking at the ceiling or the sky and saying, "PLEASE HELP ME!"

What behavior is "normal" and what behavior stems from WS? I have learned that it is impossible to find much that isn't affected by WS in some way. The low tolerance for frustration. The impulsivity. The anger. I have been told by other parents that what Erik is doing is completely normal, yet in my eyes it has an underlying flavor that is DEFINITELY NOT NORMAL. This is also completely new in Erik's personality when there was no hint of it before. Of course, he doesn't do any these things to this degree unless we are alone, so I suppose most people think I am either nuts or full of shit. I heard on the news today that Britney Spears was held on a 5150 at a psych ward, and I actually felt myself drift into a jealous little daydream. I can't help but remember when my concerns were dismissed by everybody and their dog when Erik was born, including his doctor, when I knew something was terribly wrong. Oh sure, he failed numerous hearing tests, screamed all of the time, and never smiled, but he was just colicky. There are actually people who have admitted to me that they initially doubted my ability as a mother and wondered why I couldn't hack it. I have heard this from several people, and I love their honesty (and their typical children). However, my heart hurts more than just a little bit when I hear this.

I just know that when I was a child I would never walk up to either of my parents and pinch them or slap them on the back of the head as they sat in a chair. Hearing stories from the parents of older children with WS, I relate to everything they are saying. I just know I'm not nuts.

Today I tried so hard. We read books, most of which Erik insisted he disliked and wrestled with me in order to close, destroying some of them in the process, finger painted, played with water in the kitchen sink, and made a sorry attempt to play with toys, most of which he has no interest in at all. He made it quite clear that absolutely nothing I did or tried was acceptable to him or made him happy, throwing ugly fits all the way. What makes this worse is the fact that he does not seem to enjoy typical things, so I have to think outside the box. There isn't much outside the box at the moment. Erik, I'm trying so hard, baby, but I can only do so much. I'm sorry.

Yeah, yeah, I know. Perfectly normal. Typical childhood behavior. Late terrible 2s. Ha ha. Oh, I am in for it now. Oh, yes, I have heard it all. I'll certainly try to deal with it like most mothers. I'll get right on that and try to nut up like the rest of the women around me do. Oh, and can someone tell me what I am supposed to say when I am out with a group of women, they are bragging about their children, and I feel like disappearing into the floor because I don't know how to talk about my own kid without making anyone feel uncomfortable? Yeah, the last time I tried to talk about Erik and how amazing he was, I got this: "That's so sad." I can't even talk about my own kid.

Oh yeah. I almost forgot.

Still no phone call from church. I'm not finding comfort in much of anything associated with religion anymore. After this week, I probably get to tell the church that I once loved, where I learned Bible verses as a child, where I sat in a pew with my folks over the years, where I was baptized, and where I was married at age 30, to go fuck itself with great gusto. I suppose it's time. After all, I reached out for help just a mere two years ago.

I Hate You, Mom

We made a trip to see Dr. Mike, the silver fox with a DDS, yesterday. Erik and I arrived early, of course, as I am pathologically early to everything, and he amused himself with the spinning wheels of a giant wooden bus in the matchbox-sized waiting room. Two female assistants who seemed to despise each other led us back through a short maze of tiny hallways to an open room containing two reclining examination chairs, a few matching chairs on caster wheels, and a craptastic collection of dolls, stuffed animals, balls, books, and Magnadoodles. One assistant closed a nearby examining room door to prevent any shrill noises from upsetting Erik following the short version of my speech regarding hyperacusis. They asked me questions, which I answered halfassedly as I chased my crawling son, who found a metal cart of dental tools and suctioning equipment much more enticing than any toy or book available. As I maneuvered around the brightly colored clutter in the office pursuing Erik, I caught the tip of my pointy-toed boot on a large wooden play center that was apparently screwed to the floor at a jaunty angle. I tripped, of course, and recovered by following up with a spectacular hop-hop-hop-hop-hop type of maneuver on one leg while one assistant looked up from Erik's chart with a dryly amused look on her face. As I was on edge anyway, I only narrowly avoided screaming, "There's your lawsuit, bitches!" I regained my balance and composure and sat with Erik in my lap as Dr. Mike emerged from his work on a small patient with a rather impressive, bass-like gape.

Dr. Mike's routine makes my skin crawl. He is kind but barks sharp yet barely audible orders through a wall of white teeth to his assistants, and they obey, jumping as if the floor is suddenly one thousand degrees. Dr. Mike began by examining a doughy-faced Cabbage Patch-type doll with a small, plastic mirror. He then announced to Erik that he was going to examine my "pretty finger" and, to my horror, took one of my man hands in his own, making it readily apparent to all I am in desperate need of a manicure. Nice. He then asked me to hold Erik down as he forced his mouth open and examined Erik's teeth, never letting his own wide smile falter in the slightest. Tears squirted from Erik's eyes, and his face became a deep scarlet. His strange infant cry began and intensified, breaking my heart into a million pieces. Thankfully, as I am a veteran parent of many of these types of pediatric examinations, I smiled my own plastic smile and cooed reassuringly, knowing Erik was far away in that place where he can no longer hear my voice. I went through the motions, anyway, like any good parent should.

The exam was over before I knew it. Dr. Mike said no lacquer was necessary, despite the fact the assistants had it ready and insisted Erik received it before (he has not). Dr. Mike made it quite clear I was taking perfect care of Erik's choppers, and, amazingly, his permasmile widened a little as he patted me firmly on the shoulder and made his exit. We were handed a bright blue balloon with the name of the office printed on it and asked to schedule our next appointment for the summer. The girl at the desk, obviously a meteorologist in her spare time, informed me it would be warm and sunny the next time we came to see Dr. Mike in July. I said that I hoped it would, giggled vapidly along with her, and led Erik out into the main lobby. He smiled at everyone as we left and charmed them all.

Seconds later, Erik's smile faded completely. He glared up at me and began to demonstrate the strange hand flapping I have read about in all of my WS literature but had never witnessed. His face reddened once again, and angry, hurt noises came out of his mouth and throat. Words were no longer adequate or necessary.

No doubt about it. He was PISSED.

It was quite apparent that he was angry at me and me alone for bringing him to this awful place of Nazi medical techniques festooned in primary colors and bobbing helium balloons. My boy may have his challenges, but he's far from an idiot. He knows a medical facility when he sees one. I next attempted to coax him out the door into the parking lot, but he stood there raging at me, hands flapping wildly as if he was planning on taking off into the air. When I approached him, his hands began slapping against any part of me he could get his hands on. He continued his miniature slap assault, some of which actually hurt, as I stooped down to his level to whisper that he needed to calm down. Instead, he shoved me and actually growled. I freed the helium balloon from my sweaty palm to settle against a scratchy panel of acoustical tile in the ceiling and picked him up under one arm, attempting to balance my purse and the ridiculous, Barbie-sized bag of crap pediatric dentists hand out in my other arm, readying my car keys. I very calmly carried the screaming, kicking 35-plus pounds of livid boy into the slushy parking lot, where I held him down to strap him into his seat and made it to my place behind the steering wheel without spilling a tear, even though my heart was injured. I found my iPod and pressed play, turning up the volume and trying to ignore the flailing soles of the little tennis shoes behind me wreaking havoc on the seat in front of them.

By the time we completed our five-minute drive to his grandparents' house, he was a singing, giggling, delighted angel, ready to charm the world again.