Saltwater

Most of the trips we take these days are definitely not a result of our spontaneous desire to get in the car and go. We would probably never leave the house if we didn't receive invitations from our friends and family members to travel with them. I am coming to realize how important it is to say yes to these opportunities, even though we don't know how Erik will eat/sleep/cope with a change in scenery. What parent knows for sure how their kid will react to something new, anyway?

Friday we headed to the beach to meet my friend and her family. On the way, we stopped at Brian's parents' house for a quick visit. We had a beautiful lunch by their manmade waterfall and pond. Erik was encouraged to feed the koi, some of which have grown to the size of salmon in their roomy habitat. Their white, gold, and orange scales glistened in the sun but failed to really capture Erik's attention. Instead, he wanted to kick at the neat layer of pea gravel or run unfettered under the trees. Brian and I traded off the sweaty duty of chasing after him to prevent him from tripping and falling head first into the pond with the fish or destroying flowerbeds. Erik did stop moving long enough to devour an alarming amount of fruit and homemade muffins.

After lunch we said goodbye and drove across one more mountain range to the coast. We wouldn't see the sun for the rest of the weekend, but the air was fairly warm and pleasant. We located the beach house my friend had rented in a housing development striped with wide, soft drifts of sand. Rows of ranch-style houses surrounded by more sand and beach grass lined the streets, most of which were empty and/or for sale, but a few families milled about in driveways around vehicles bulging with suitcases and beach accessories.

Our two-bedroom, two-bath house was relatively new and full of soft light with an open kitchen. The guys set up two small barbecues in front of the open garage door, and oysters and slabs of steak were grilled for dinner. Shaena and I baked chicken breasts in the oven and fed the kids hot dogs and pasta. By the end of the day, Erik had briefly cried himself to sleep in his bunk in our room, and his friend Samantha had retired to her toddler mattress on the floor of her parents' room. We all poured ourselves cocktails and relaxed. The guys retired to the family room in front of the television/stereo, and Shaena and I found ourselves in chairs on the front deck underneath a relatively rare coastal lightning storm playing across the sky. We talked and drank until we were exhausted and could no longer keep our eyes open.

We tackled touring the aquarium up the highway the next morning. Erik seemed only slightly interested in the exhibits. He did enjoy the creatures that were available to touch. The place was crowded with strollers and noisy children, however, and it was soon apparent he was completely overstimulated, a phenomenon I assumed was history at his age. Brian finally resorted to carrying all 38 pounds of boy on his shoulders, something we do when Erik refuses to walk any further and begins completely melting down. We hastily found the exhibits we wanted to see, briefly separating from our friends and texting each other our locations, finally meeting up in large, plastic tubes surrounded by saltwater and marine life, including sharks. By now, Brian and I were both on edge, as Erik was in a full, defiant meltdown. He whined and whimpered. He refused to walk on his own. His limbs flailed spasmodically. He yanked on our arms and refused to hold our hands.

Against my better judgment, we drove on to lunch on the waterfront. Tourists crammed themselves in shops full of gifts and candy. One of the oldest, most popular restaurants we love had a long line snaking along the front. We decided to attempt waiting for a seat, which would take approximately 20 minutes. We stood on the sidewalk in front of the tiny restaurant with strangers for nearly half an hour. Erik found one woman with spiky, bright blond hair and an easy smile unusually irresistible, and she allowed him to hold her hand. Finally, we were led into the tiny, bustling dining room and seated at a long table in the middle of the crowd. I ordered a bay shrimp sandwich with an ice-cold beer for myself and a grilled cheese with apple juice for Erik. He devoured nearly the entire sandwich with gusto. We ended up having a really nice lunch before heading back to the house. As Erik had reached his limit long before lunch, we decided the brewery we thought about visiting was a no-go.

Erik's friend Sammy invited him to watch videos with her from time to time on the leather couch in the family room of our beach house. He really took a liking to the Pixar feature called Cars. He did very well inside the house or playing with sand on the deck without the extra stimulation of strangers and unexpected noise. He interacted with Sammy in new ways and was able to converse with her a little more than he had in the past. Brian took him to the beach, which apparently went well until it was time to go. When I met up with them on my way to the ocean after a trip to the grocery store, Erik was walking down the street with Brian. His toes were bleeding very characteristically from the beating of being exposed, and he was blubbering. He told me very dramatically that he loved me, and I had to giggle. His clothing and coat were soaked with seawater and covered in a thin layer of wet sand. Through his exhausted fit, I could tell he had loved every second of what he had just done. He had apparently splashed in the chilly water thigh deep and fallen at times, explaining his condition. He absolutely loved it. I spent a little time on the beach myself, feeling the sand erode under my soles as the waves rushed back into the ocean and felt my toes begin to lose feeling in the frigid water. I stood still, feeling the power of the ocean vibrate every cell in my body. I guess I had a little word or two with God while I was standing there, too.

Sunday we packed our things and vacated the house, which seemed to be hard for all of us to do. We drove to the valley and met at Wendy's for lunch, where Erik began the familiar signs of nuclear meltdown yet again when a family with noisy children seated themselves directly behind us. He put his head in my lap and covered his ears. His feet kicked. Finally, I asked him if he wanted to go for a walk. He said yes, and we amused ourselves in the parking lot next door in front of a Chinese restaurant, a Mexican bakery, and a dark barbershop. Erik walked atop the parking curbs, sometimes requiring my help to maintain his balance but becoming annoyed when I tried to help him. When everyone else exited the restaurant and it was time to go, he had another major malfunction. He stopped short of sitting down, but his legs became heavy and extra clumsy. He burst into tears. He yanked roughly on my hand when I tried to move him along. Losing my temper, I snapped at him with a raised, impatient voice. He cried even harder.

I got us both into the Jeep and felt my emotions seep through the exhaustion that comes with packing and traveling. Tears rolled down my face silently for a minute or two, and Brian patted my knee. I was tempted to give up and go home without our scheduled trip to the amusement park at this point, but we finally decided to press on.

Up the interstate we went.

I finally spotted the large sign in front of the familiar theme park, a place I have not been to since I was small. We parked in front of a castle wall and joined our friends. Erik seemed excited and held Sammy's hand. The guys paid our admission and tickets for the rides inside the park, our optimism bleeding through once again. My sense of humor spurred me on as I read the rules that were posted on a Medieval-looking sign at the start of the trail and added my own. No outside food or drink. No toplessness. No pooping in the moat. Shaena and I giggled ourselves silly.

We followed the trail into the darkness of the park under a gorgeous, green canopy of foliage. Brightly painted concrete buildings illustrated assorted fairy tales. I entered the ones that would accommodate my adult body, peeking through windows at ancient exhibits that sparked memories I thought were lost. The audio portions of many of the featured tales were garbled beyond recognition, even for my transcriptionist's ears, but the tales were easily recognizable. Erik reluctantly entered a large rabbit hole with his father, who was on all fours, and Shaena and I ran ahead, looking for the place where they would emerge.

By the time we had come to the portion of the park featuring rides, Erik was melting down yet again. He entered a wooden door labeled "saloon" in the Wild West section. Inside was a straight, dark hall, and the floor was soft and unstable, designed to make you feel like you were intoxicated. He ran back and forth, almost frantic. He began making the incessant engine noises he makes when he is in full freakout mode. Sammy was across the narrow street, patiently allowing a man who looked like Abe Lincoln to put period clothing over her own outfit for a photo opportunity. Brian wondered aloud if Erik would hold still long enough to do the same. We quickly came to the conclusion that he would not. Instead, we watched and let our kid run back and forth.

All six of us stood in line on wooden stairs for the little roller coaster in the trees, which would be Erik's first. It had been constructed in the late 1980s and was intended to look and feel as if its riders are in bobsleds. Shaena and I decided to ride together. We crammed ourselves in one capsule with Shaena sitting between my outstretched legs and me with my chin resting on her shoulder. An opaque plastic cover with large holes in it was snapped down over our heads. I couldn't help but think of Jim Carrey and Jeff Daniels on that moped in a scene from the movie Dumb and Dumber. She began discussing the sign she had happened to read about getting splashed with water on this ride and how interesting it was that I had chosen the seat in the back. I began giggling, wondering if I could possibly survive this experience without wetting my pants. The ride jerked to a start and we began screaming immediately, despite the fact our car had just begun to move. I was thankful Erik's car was in front, away from our gleeful hollering. We gained speed and rocketed through the forest for two and a half minutes, our screaming gaining new volume with every violent turn. When we all escaped at the end and made our way down another flight of wooden stairs, my knees were actually a little shaky. Brian reported that Erik emitted a "YEE HAW" or two but that he quieted down as the ride progressed. However, he protested and thew a fit as we walked away from the attraction. His defiance would only intensify. We came across a tiny Ferris wheel and debated on whether or not to trap Sammy in a cage with Erik on the thing. Brian wondered aloud regarding the worst thing that could happen, and we all laughed. Erik refused to ride, however, still upset about leaving the roller coaster and mumbling about the promise we had made about him seeing a train. We kept going until we saw the psychedelic-looking kiddie train, its lights merrily flashing in the rain. Erik agreed to ride with Sammy. Shaena and I took shelter from the weather by the bumper cars, where we could watch and snap photos. Erik and Sammy were seated in the first car shaped like the train's engine and patiently waited as other children found their way to their seats. Brian yelled over the fence to the kids to push the illuminated button in the dash, and when they did, various animal and train noises blared from speakers. Erik covered his ears but was interested. The ride finally began. Lights flashed, and the cars rocked gently as the train went a few times around an area decorated with giant toadstools and tiny village scenes.

When this was over, we gave our remaining tickets to our friends, and Brian carried a now hysterical Erik out of the park through the rain. I used Ye Olde Restroom on the way to the parking lot one more time and we found our Jeep. I was kicking myself for forgetting the cord to Erik's DVD player, a device we never seem to really need until the trip home. We listened to music for a while, but Erik finally snapped at me to turn it off. Erik never really falls asleep in the car, but he finally lost consciousness, surprising us, and the ride over the mountains was fairly pleasant. We feasted on coastal fudge and salt water taffy until I felt happy and more than a little sick.

In the end, the trip was enjoyable, but I wouldn't say we had time to completely relax. I was on edge a lot of the time. I told my friend that trying things with Erik is scary but always rewarding in some sense. Even a day afterwards the memory of the disastrous diaper blowout in the driveway and the tantrums are fading. After all, we will never know what will work and what won't if we don't make an attempt. Would I do it again? Of course.

There is, however, always a price to pay.

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.

Barbs

The children around us are growing up now. They have their own distinct personalities, and they are developing some clear interests in the world. This is amazing to watch. However, I have come to yet another realization about having a child who isn't so typical and still demonstrates a delay of a year or two.

Typical kids seem incredibly MEAN to me.

Sure, Erik's a pill to me and his father on a daily basis. However, he has quite obviously not yet developed the same assertiveness and aggressiveness that other children seem to have programmed in them for their survival. He doesn't know what it means to be competitive with his friends yet. He doesn't have a jealous bone in his body. His remarks about other children do not seem cruel like the ones I am hearing from other kids. This seems to have occurred overnight. Either I am incredibly deaf to what is coming from my son (a distinct possibility), or he just hasn't developed the sophistication required to sound like the others do. My money's on the latter.

It seems that lately I am shocked on a regular basis by what comes out of the mouths of typical children about Erik, especially now that his differences are becoming obvious to them. I don't believe all of these statements generated come from a mean spirit, but some of them seem to be taking on a distinctly nasty flavor. These things might not bother me at the time, but later I think about them and feel angry and sad for Erik. This probably stirs up memories of how difficult school was for me at times. I wonder what's to come in the future. A friend of mine reminded me that this is perfectly normal behavior from typical children.

I guess I wouldn't know.

Attempting Courage

I'm feeling nervous. I wrote the following letter to the pastor at our church. Hopefully I will not chicken out before I deposit it in the mailbox. I have enjoyed our anonymity in our congregation, but as time goes on it is clear that soon everyone will know who we are. The article I enclosed on integration in a church setting is no longer available on line, but I would be happy to share it with you upon request.

January 12, 2009

Dear Steven,

I attended a trivia/brainstorming session for parents last year with my husband Brian. Our son Erik was born with a genetic birth defect called Williams syndrome, and although we tried on a few occasions, we were unable to attend church because of his disabilities.

First of all, I would like to express how grateful we are for the help we received. Janet did a fabulous job of matching us up with Marla, and she has been lovingly caring for Erik during church services every other week. Erik’s brain does not process loud noises well, and they seem to cause him physical pain. For this reason, being in the nursery with crying babies was absolute torture to him. In fact, on one previous attempt to attend church, I left during the service sobbing with our agitated little boy, feeling like we did not fit in anywhere. Now that Marla is on our team, she has introduced Erik to the church experience, and he is thriving there. Lately he has been able to sit with his peers during the children’s moment with Marla. It is not often that things feel “normal” to me, but this simple thing has given me so much joy. I had tears running down my cheeks the first time the door opened and Erik was led to the front of the church. Just like the other children.

The purpose of this letter is twofold. First, I would like to make myself available in the event there are parents who are struggling with a disability in their child. I am concerned there may be others in our community who are feeling alone like we did. We were isolated for years until I finally spilled my heart to a deacon who called to ask how things were going. I am also now part of a local support group in town and consider myself an expert at having coffee with others.

Second, I would like to give you this article that beautifully illustrates the challenges we have been experiencing and will likely experience in the future. It even describes the behavior of a young boy with Williams syndrome. If you do not know Erik yet, he will definitely make his presence known to you in the future. Erik’s syndrome gives him what some have labeled a “cocktail party personality.” He knows no strangers and will approach anyone. If I do not intervene, he will approach people on the street, reach up to them, and hold their hands. While this is terrifying as a parent outside our home, I believe a church environment may be a safe, supportive place for our family to just BE without the constant fear. I do not look forward to the day he realizes he is different or hears someone call him a “retard.” That day will be very difficult for Erik, but it is coming, and his belonging to a group will be even more important. Not everyone believes his odd behavior and friendly mannerisms are charming, and that has been a painful realization over the past few months for me.

My hope is that one day Erik will be able to sit with us in the sanctuary and that the people around us will at least attempt to accept who he is, differences and all. I plan on teaching him to be a polite young man who is respectful and keeps disruptions to a minimum, but I know he will struggle. Only time will tell what is possible for our family. However, it is so much easier to dream knowing we have support from our church family.

Finally, that dark day I left the church crying my eyes out, there was a Christmas tree outside the front doors you had invited us to take a label from. The wind was whipping things around, but I managed to free one without letting it go. The word on it was “COURAGE.” I now unpack it from my box of Christmas decorations each year and place it on my own tree to remind myself how far we have come and what is possible if we dare to dream it.

There is nothing left to say but THANK YOU.

Very sincerely,


Nancy (Erik’s Mom)

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.

Off

Erik has been off for the last couple days. His behavior consists of alternating moments of cuddling, high frequency whining, following me around the house pleading "no" for no reason whatsoever for hours at a time, crying at the drop of a hat, and a handful of his infamous tantrums/slapping/freaking out. By the end of yesterday, I was completely losing my mind. He asked me a thousand times where his father was but only seemed angry at him when he arrived. Besides me having to wipe his nose free of some clear discharge maybe once a day this week, likely because the air is laden with pollen, there are no symptoms of sickness. I sent him outside to play yesterday while I cleaned up around the garage and then took my place in my chaise lounge on the porch with some books. We both enjoyed hours of that. A neighbor came down the driveway with a 2-year-old grandchild, and we went out to chat with them. The girl was a seemingly gigantic, gorgeous child who was nearly as tall as Erik. She quietly offered him rocks she plucked from the ground. Erik was fascinated by her but soon decided she was frightening and climbed me like a koala bear scales a eucalyptus tree, acting as if the ground was molten lava and refusing to detach himself from my body. This little trick of his becomes much less adorable with each pound he gains.

Erik can say, "Where'd Daddy go?" and "Let's go read some books" now. He tried guacamole this week and thought it was the sweat of the devil, making one of his familiar smacky-lip fish faces. Between the Williams and the genes he received from me, his lips are quite generous and expressive, putting Mick Jagger's to shame. He has been making his stuffed animal, Stinky Dog, talk more and more in a deep, gravelly voice. When I can't seem to get Erik to do something, I ask Stinky if he would like to participate in whatever activity I am proposing. Stinky is often in a better mood and can talk Erik into it.

Tomorrow is the fundraiser for my friend's daughter with 22q13 syndrome. This means an afternoon of chair massages, live music, mini-pedicures, silent auction, and amazing food in a gorgeous location nestled in the woods. Men are not allowed unless they are waiting on us hand and foot. Perhaps I'll bring my camera.

Knock on Wood

Have you ever been close to tragedy
Or been close to folks who have
Have you ever felt a pain so powerful
So heavy you collapse
I've never had to knock on wood
But I know someone who has
Which makes me wonder if I could

-- "The Impression That I Get" (Mighty Mighty Bosstones)

This week I feel incredibly heavy. I have battled depression on and off in the past, but it's back with a vengeance. I feel worse than I ever have in my life and am considering calling my doctor. It does not rain much in this area normally, but the sky opened days ago and has not let up since. Our Memorial Day weekend was spent mostly inside doing a lot of nothing. Supposedly, things will begin to clear tomorrow. I normally love the rain, but this is a bit much.

Erik is vacillating between being a delightful angel and throwing fits straight from the depths of hell. We had a good morning yesterday before work. I constructed a rather shoddy fort out of couch cushions and a blanket, and he dove into it, hitting his head loudly on the door that served as one of its walls. He came out holding his head, and when I made a big fuss over him and planted my lips over the spot where his hand had been, he said, "That's better," and went back to playing. By the time my parents brought him back in the afternoon, he had decided he was furious at the cat for no reason and flailed his limbs around, slapped the air, growled, attempted to slam furniture and toys into the floor, and generally had a giant cow. After dinner, the three of us walked up the gravel drive to the neighbors in the drizzle and enjoyed cocktails together. It did Erik a world of good. He was offered some orange juice, which he politely accepted. He sipped from his glass and told my friend, "This is very good. Thank you." He was excited to play with Max and Maggie, the two daschunds there. He gently held their long faces in his hands and talked to them in a funny voice that sounded an awful lot like one of the funny voices I use frequently (yeah, I'm insane). He said, "Whatchoo doin dere, Maggie?" Too funny.

I purchased noise-cancelling headphones for the flight to the convention this summer. They cost approximately the same as a small sports utility vehicle, but the little airplane we will be flying on is extremely noisy. I worried aloud that Erik won't even wear the headphones, but Brian suggested that if Erik won't wear them, we can wear them instead so we won't have to listen to him screaming. I laughed and imagined myself strapped into my seat holding a glass of wine and watching my Will and Grace box set on Erik's DVD player, smiling pleasantly while he screams bloody murder with his hands clamped over his ears. I think part of the reason I am a little (okay, a lot) off is the upcoming convention. Because we are geographically isolated from the families we know, this is a huge deal for my family. While I am looking forward to going, I will be relieved when it's a memory. I know this year will be the hardest, and once I get it under my belt, I'll be fine. My parents are going to be there, and I will likely get to see my brother and his wife as well. Still, I plan on firing up my margarita machine when I get back and throwing a giant barbecue party. My support group is next Thursday, and I feel a little sick to my stomach about actually talking this time but know it would be good for me.

Erik's physical therapist told my mother that Erik's body was tight this week in the pool. I hate hearing that because it makes me worry. Any physical change in him frightens me. I'm thankful he has PT every week to keep mobile and stretch his body out, but I still fret. I suspect he is growing at light speed again. He doesn't have to stand on his toes to see out my office window anymore. That's new.

Oh, yeah -- The porch is officially open for the season! Even in the rain, there's a dry, relatively dust-free seat ready for you if you want to stop by. I sure could use the company.

That's it for now.

Macho Mom

Yesterday Erik decided that going to school was the worst fate possible. I concluded that because I had applied sunscreen all over his exposed skin, he was under the impression we were headed out to play in our own yard, not go to school. He then threw one of his famous fits while I located my keys and purse and tried to herd him out the door. He stiffened his body, growled, and flailed his arms and legs about like a Solid Gold dancer, making it very challenging to corral him in his car seat. I backed out of the driveway and frantically clawed around the Jeep for my iPod. I scrolled down the display until I found a song that might calm him down, a technique that usually works. There's nothing quite like blasting a Village People song while listening to a child scream at me at 9 a.m. It almost made me laugh. Almost. As we made our way across town, Erik stopped struggling in his seat and realized he was done for and that I was not going to fall for his little antics. I told him that he would play on the playground at school, after which he frantically scanned the landscape zooming past his window for anything resembling a park. He saw one and said, "There's a playground!" He continued pointing out anything that remotely resembled play equipment, including rows of horseshoe pits, telling he he didn't want to go to school the entire way. Even after almost a whole school year, he does not completely enjoy being around other children. He likes them just fine, but they are just too noisy, and he endures this only because he has to.

As it turns out, he apparently did fine once he was there. His teacher kicked me out of the classroom relatively quickly when I explained Erik was having an off day. I then headed to the salon to get my hair cut and hoped for the best. When the bus came up the driveway later in the day, Erik was in his seat smiling like the grand marshall of a ticker tape parade.

We had just one more major meltdown before the day was over. He loves the outdoors and detests coming back inside. Fortunately, however, I have figured out how to cope with this situation. I fed him, brushed his teeth, dressed him for our 85-degree weather, and gathered the work I had to do so I could complete it during his nap. We spent an hour outside in the glorious weather. Erik pushed his stroller around the property, as usual, and I sat in my lawn chair. At one point, he climbed onto his tricycle and pedaled a bit with my help. When it was time for me to work, I began putting things away, and he began screaming. I picked him up, dusted him off, and took him inside under my arm. I placed him flailing about in bed and screaming at me and shut his door. Having a gigantic hissy fit tends to tire a boy out. He slept, and I worked, finishing all of my rheumatology progress notes and sending them off electronically before dinnertime. Oh, I'm getting good at this.

My bright spot of the day was when Erik woke up and came out to cuddle with me as I enjoyed a cocktail and the evening news. He was in good spirits, having slept his usual three hours, and asked if we would go on a walk. I hugged him tight and said that his Boppa and Gua would probably take him on a walk the next day. I said, "Don't worry, Erik. You'll go on a walk soon."

He smiled and replied, "Eventually."

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.

Clean Slate

I get to leave the house today, even if it is only to take Erik to physical therapy south of town. My parents will pick him up this afternoon, and he will be excited to see them both. If I don't have work, I will have time alone this afternoon.

I am off to work out and look forward to Erik running around me in his PJs saying "Ring around mommy!" in his sing-song voice. I will then get myself together, load Erik in the car, and put on a protective layer of Cover Girl Almost Nude lipstick so I can face the world.

I'm thankful for one more day to try this all over again.

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.

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