Life Goes On

Ob-la-di, ob-la-da,
Life goes on, brah
La la how the life goes on
Ob-la-di, ob-la-da
Life goes on, brah
La la how the life goes on

-- "Ob-La-Di, Ob-La-Da" (The Beatles)

We had yet another dentist appointment yesterday. I have been there so often that I feel like I should at least have my own coffee cup in the employee lounge. When we were first scheduled for what they call "fun visits" months ago, I was a complete skeptic. It seemed that for months Erik's anxiety about the dentist was only intensifying. Smack dab in the middle of the process, the wall of gleaming teeth that was Dr. Mike retired and was replaced by a comely 12-year-old named Dr. Brent, which only served to sour my attitude further. In the end, though, the efforts that originally seemed futile have actually worked wonders. Color me surprised.

Yesterday after Erik and Stinky-Dog rode the orange examination chair like a lame mechanical bull, Erik was allowed to play with the suction tube, which he considers one of his beloved vacuums. He ran it over Stinky-Dog's scruffy face and flaccid body, and the stuffed animal chuckled and begged Erik to stop in his throaty, pack-a-day grumble. By the time Dr. Brent joined us in the room, Erik easily opened his mouth wide for the first time and demonstrated that his teeth were completely free of cavities. I was informed that our brushing techniques were obviously much more effective than the ones typical children used on their own teeth (I allowed myself to feel a little smug, as this feeling is rare and quite precious). Erik even allowed a nasty-tasting fluoride solution to be swabbed over his teeth with a brush and successfully vacuumed out the excess on his own with the suction tube for the very first time, seeming to enjoy the juicy sound of it. He was rewarded with two balloons and a brief session of stimming/spinning on the wheels of the toys in the waiting room, where I discovered a Ms. Pac Man machine. Score.

This summer has been one of change. I have made some difficult decisions regarding my personal life and am striving to be a better friend, daughter, sister, aunt, mother, and wife. I desire to feel more connected with the outside world again and have sought help to sort things out. I was amazed at how intensely the emotions I felt a few years ago easily bubbled to the surface like new when I described my experiences out loud. Today I meet a part of my father's biological family that my parents recently discovered through their research over the years. From what I have heard, they are amazing. Ironically, I lost my grandmother last week, who was a very large part of my childhood. Our relationship over the past few years has been difficult, but her love for Erik seemed to smooth things over and brought us together one last time, which happened to be the day before she passed away. I have come to believe that one of Erik's jobs here on earth is to bridge the sometimes incredibly profound gaps between the people around him, and he is an absolute expert at it, even at the ripe old age of 4.

Today we attend our last IFSP (IEPs begin next year). We are hoping to say goodbye to diapers this year and are excited to witness more of the progress he has shown us every year.

I Cast All My Caries

I took Erik to the dentist today. Dr. Mike apparently retired, so Dr. Brent took over. After I got over the initial shock of having what appeared to be a sixth grader take care of my son, Erik made some comments under his breath about one of his favorite television shows. As it turns out, Dr. Brent does look an awful lot like Steve, the original host of Blue's Clues. He just needs that fruity striped shirt.

The hygienist was able to take Erik up and down in the chair, and he is now an expert at operating the plastic suction tube (or, as I call it, the little "vacuum"). He used this device on Stinky-Dog's snout and laughed maniacally.

Although Erik stayed in the chair and remained fairly calm, he was obviously annoyed by being touched by the staff. Getting Erik to open his mouth is still almost impossible without prying it open with torturous dental devices, but they gave it the old college try. He was eventually distracted by the ominous noises coming from the next chair and became limp and semi-compliant due to his anxiety. Because of this, Dr. Brent was able to get a better look at Erik's bottom teeth. He then asked me if Erik had chocolate for breakfast.

Uh oh. Not a good sign.

We have two more "happy visits" scheduled for the next month to try to get a better look at the suspicious tooth. The dentist was unable to see much of Erik's top teeth at all. He very gently mentioned the "S" word to me.

Sedation.

I have more research to do on this topic about what is required in a dental setting, but I would be lying if I said this didn't scare the dickens out of me. I was barely okay with it when he was in a cardiologist's office surrounded by crash carts.

I allowed Erik to play with the toys in the waiting room for a few minutes on the way out and tried to shake off the curious stares I received from the other father who was at the next station in the examination area. I have to laugh because we make a complete scene at each and every appointment in offices all over town. Erik is always behind the desk helping schedule his own appointment, rolling on the floor trying to get a better look at the wheels on clinical chairs and tables (and asking where the lugnuts are), or singing songs in his own language at the top of his lungs. And he doesn't open his mouth at all without making some sort of loud sound. When they ask him to open it wider, his volume just goes up. Erik also cracks everybody up with his quips, Stinky-Dog voice, and reactions to things. I am quite confident that nobody will ever forget us.

And if they do, we'll be back for another round in two weeks!

Crappy Visit

In every life we have some trouble
When you worry you make it double
Don't worry, be happy

-- "Don't Worry, Be Happy" (Bobby McFerrin)

Yesterday I had a message on my cell phone reminding me about Erik's "Happy Visit" (apparently we have graduated from the "Fun Visit") to the dentist scheduled for this morning. I could feel my face fall as I listened to the cheerful voice and felt my mood turn stormy. After our last appointment, I was ready to demand a copy of our records and make an angry exit today. I tried to keep an open mind, but I found myself a little more than tired of trips to that place. I have lost count of how many times I have been there just in this calendar year.

I made sure not to tell Erik where we were going until this morning at breakfast, and he seemed to take the news well. When we arrived, we were led into the private room with the big, orange chair once again, although the wide door was left ajar. Erik was already creating a lake of hot tears, telling us all, "I don't want to!" The hygienist gave Stinky Dog a ride in the chair, acting as if we were in the middle of the most magical place on earth, and pulled out the usual tricks that seem like a complete waste of time to me. The only thing Erik seemed thrilled about was the suction tube, which I previously told him was a little vacuum. He expertly used it on Stinky Dog's face and shook the stuffed animal, indicating that Stinky was quite ticklish.

The dentist made his entrance, upsetting Erik even more. He placed his large hand on my shoulder and greeted me warmly. He seemed more connected with Erik and less distracted than he did at our last visit. He talked to me through his conversation with Erik, telling him he would only do what I approved of doing, and this made me feel better. We ended up abandoning the large exam chair. Instead, the hygienist lowered a small chair on wheels, and I sat in it, holding Erik firmly on my lap. Erik was now hysterical. I put one hand on Erik's forehead and pressed the back of his head against my shoulder. His screams intensified. I smiled at the dentist to signal him it was okay to proceed, and he rolled his own chair closer to me. My knee pressed into the crotch of his expensive slacks, and I tried not to notice. We locked together like this, sandwiching one angry patient, and I held Erik's strong hands down. I decided it was just best to get this unplesantness over with.

It wasn't necessary to use the metal device to lock Erik's jaw open after all. It remained a silent, threatening presence atop the paper-covered tray. Instead, Erik cried so hard that his mouth automatically opened, allowing the dentist to paint the back teeth with the cream-colored fluoride varnish and wipe off the excess with gauze pads. The dentist soothed Erik and reminded him the world wasn't perfect.

This I know.

After the short but messy procedure, the dentist tenderly wiped the tears and snot running down Erik's face. Erik ceased sobbing and actually thanked the dentist on my cue, obviously not holding a grudge. In fact, when the dentist asked for a hug, Erik quickly gave him one, almost collapsing into his arms. We collected our balloon and toy car from the frog bucket, and I returned to my chair back in the waiting room as promised to let Erik stim on the spinning toys for five minutes. Another mother attempted to make eye contact with me, but I was feeling less than social and looked away. I'm sure Erik's screams were more than audible from any chair in the building, and I couldn't imagine what she was thinking when we emerged and my 4-year-old crawled around on the floor, giggling with delight and spinning everything that wasn't glued down. It's not embarrassment I feel but a sense of disconnect with the world on occasions like these. Erik looked at the other children in the room and brightly spouted, "Hola, amigos!" and "Hello!" The younger girls echoed a pleasant greeting on their way by. The older boy looked annoyed and ignored Erik altogether. Typical. It will be a miracle if I can get through Erik's childhood without slapping a stranger's child. So far, so good. But I'm not making any promises.

Soon I dragged Erik from where he was sprawled on the floor, and I made it to the car with just minor protests. As I buckled him into his car seat and deposited the putrid pile that is Stinky Dog on his lap, I took my palms and placed them on each side of his face. I paused for a moment and looked into his eyes, holding him there almost too firmly, and I kissed him very hard on the forehead before I shut the door and walked around the Jeep.

Our next "Happy Visit" is a whole three months away this time.

Boulyah!

Anti-Dentite

I continue taking Erik to the dentist every two to four weeks. The photo above is of Erik using the suction tube on Stinky Dog. I tell Erik this piece of equipment is a miniature vacuum, and he enjoys playing with it.

The dentist no longer amuses me much, as I feel like he views us both as a gargantuan inconvenience because of our requirements for a private room and extra attention. Even his pimp-like, leather-inset pants and freshly-pressed shirt quietly irritated the crap out of me. I was informed that "Ms. Nikki," the woman half my size who insisted we deal only with her for Erik's special needs, is no longer employed at that office. Our new technician was able to sit Erik in a chair and eventually convince him to open his mouth so the dentist could paint foul-tasting fluoride lacquer on a couple of his teeth. Of course, I was required to explain hyperacusis all over again to the new technician. The dentist repeatedly instructed Erik to "calm down" and "stay still," and not in the kindest tone, but Erik seemed almost shocked into obeying. As he peeled off his orange gloves and got up to leave the room, Dr. Mike gruffly told his assistant they would be using the device to pry Erik's mouth open for an extended period of time at our next visit. Knowing Erik, this likely will traumatize him all over again, erasing any progress I had made with the whole desensitization process. Weeks of work down the drain.

I then took Erik to the main waiting room the office shares with a pediatric medical clinic and let him spin some wooden wheels on a bus-shaped play structure while I gathered my thoughts. I noted how strange it was to feel angry and disappointed while wearing a bobbing helium balloon tied to my wrist. Erik looked up at me and laughed, obviously delighted to indulge in some good, old-fashioned stimming. When it was time to go, he protested and began to cry, telling me he wanted to keep spinning the wheels. I practically dragged him out the front door, as he is too heavy to carry anymore.

Fun visit, my ass.

"Fun" Visit to the Dentist #1

We went to the dentist yesterday for his first special needs "fun" visit to attempt to take the trauma out of the obviously upsetting experience for Erik. We arrived before any other patients and met Erik's hygienist. We were able to get him to sit in the chair briefly and showed him the equipment used to clean teeth once again. The hygienist spent a lot of time polishing my hand with her tools to demonstrate the process to Erik. We spent a total of approximately 20 minutes there, and she was able to get Erik's jaws to open just enough to brush one of Erik's teeth with berry-flavored fluoride. We were provided a toothbrush and a toy with wheels before I took Erik back out to the waiting room to allow him to spin the brightly-colored wheels on the wooden play structure for a few minutes. We go back yet again in two more weeks.

I guess we'll get his teeth clean after all. One at a time.

Putting the "F" in Fun

I took Erik to the dentist yesterday. He seemed perfectly comfortable with the idea and talked about the toys he remembered in the waiting room. He was quiet and calm from the time I unloaded him from the Jeep to the time we walked past the receptionist's desk. When we were escorted to the examination area and he was asked to hop up onto the blue dental chair, however, anything resembling calmness in him instantly evaporated. Apparently our prior visits to this office did nothing to lessen his anxiety. His face turned tomato-red, and tears began to squirt from his eyes. He begged us to let him get down.

I looked up at the hygienist, who wore a glazed-over expression of alarm, and I quietly explained to her that Williams syndrome tends to pretty much erase the gene that controls anxiety. She nodded and asked Erik a series of maddeningly perky questions. He continued to bawl and answered no to all of them. I reassured her that it was okay to start polishing, but she ceased her attempts and just sadly repeated, "Oh, he's so cute," like she was apologizing. I kept lamely patting Erik, not knowing what else to do. By this time, a couple of other staff members began dodging each other as they darted back and forth in an apparent attempt to ready a private room for Erik. By this time, we had likely frightened every child in a five-mile radius. As the staff's attention was directed away from Erik and towards a new battle plan, Erik managed to slip off of the shiny chair and wander over to the other side of the room, where a pretty young mother sat with a perfectly quiet toddler on her lap next to a dentist's chair containing a little boy getting his teeth polished by another hygienist. The mother smiled politely at me, and I smiled back and shrugged. I was suddenly aware of the waistband of Erik's diaper and the way he moved in his orthotics. She was very successfully attempting not to stare, but I detected a touch of curiosity. I noted how depressing the situation was for me but marveled at how desensitized I have become. What would have sent me to the car in tears before now just makes me tired. Plain and simple.

I suppose that's a bizarre kind of progress.

What happened next almost sent me into hysterics. Erik approached the defenseless, immobilized boy in the examination chair. The youngster's eyes slowly turned toward my son's approaching face, and their noses threatened to touch. Erik tilted his head to get a better look at the pneumatic polisher and all that was occurring in this stranger's mouth. His neck craned, and he drew himself even closer. The boy looked slightly horrified at Erik's scrutinous stare, and his eyes darted back to his mother for reassurance. After I stifled a giggle and told Erik to back off, the hygienist assured me that my son was doing just fine.

It was at this time that I was approached by a woman half my size with a confident, authoritarian tone. I was slightly put off by what she said next, but I was glad to hear she wanted to try a new approach instead of asking me for the next step. Apparently the private room idea had been mothballed. Dr. Mike bobbed by on the other side of the room divider and waved at me, simultaneously flashing his generous wall of white teeth, looking like a celebrity on the cover of a glossy tabloid. He disappeared into an exam room.

The woman told me that their office schedules "fun visits" for children with special needs. I cringed at this entire phrase but couldn't put my finger on why. Maybe the word "fun" wasn't the F word that automatically came to mind when I had to take Erik to the dentist. Unless there is a margarita machine in the lobby, "fun" wouldn't be my first choice of adjectives. She explained that it would be necessary for us to return more frequently than every six months in order to get Erik accustomed to the environment. My cynicism kicked into overdrive, and I began to daydream about being placed in a sealed crate with a family of rabid raccoons on a daily basis. I can't imagine my hatred of the animals would lessen with repeated exposure, but, then again, I'm not a psychologist. Thankfully, I recalled some of the information I had read years ago about dental visits for people with WS and how a technique like this might help. I attempted to adjust my deteriorating attitude. The woman instructed me she would need to be informed each time we came in, as Erik would need special attention, and that she would handle it herself. She said that she would come in early if necessary. Her confidence began to feel condescending, and I realized that I was probably being a bit defensive.

Erik was invited to choose a plastic toy from a box, which I did for him, as I usually do. I chose a sparkly rubber ball, showed it to him, and stuffed it into the bowels of my purse to join the assortment of toys and stickers Erik shows little to no interest in at each of our appointments. The receptionist scheduled us for a "fun visit" in two weeks, and we said our goodbyes. Erik asked me once again if he could spin the wheels on the wooden bus in the waiting room. Knowing this is something that calms him, I took a seat across from another mother and let Erik go to town. After about 10 minutes, I collected our things and told him it was time to go.

Dental Damn

Erik and I went to Dr. Mike, the children's dentist, yesterday. When I previously scheduled the appointment, the receptionist asked if Erik needed a routine cleaning. I hesitated and answered yes. We never had a real cleaning before. Just an exam. Is anything really routine in a medical office with Erik? I knew that they would review the chart before they saw us. Right?

When we arrived, Erik and I were instructed to sit in a large waiting room flanked by doors leading to our dental office and to another pediatric clinic. I stared at the door in front of me. It had a translucent panel of glass in it, making me think of old black and white movies for some reason. I suppose it seemed to me like every good detective or private eye had a door like that with their name stenciled on it. This door, however, had a cheerful-looking giraffe painted on it. The advertisements for the office repeated the phrase, "Kids...that's all we do." I hate that. It sounds...well, like something one shouldn't announce. I bounced my knee up and down as Erik crawled under my chair to get to the wheel on a piece of play equipment that was pressed up against the furniture as the other children played with it very appropriately, pushing little wooden cars around a series of tracks cut into a brightly-painted board. I heard the wooden circle beneath me begin to spin, and Erik's stiff, long legs stuck out from beneath my chair as other patients and their parents walked by to get to the pediatric clinic. The glass door opened a few times and revealed children holding yellow balloons printed with the name of the place on them tied to little plastic bags containing cheap toys and toothbrushes. When the little girl who played next to me left to find her mother, I noticed all of the wooden vehicles she touched were left neatly in tiny parking spaces lined with white paint.

After the hygienist came to get us, we followed her back through a cramped maze of hallways and exam rooms to an open area with bright blue dentist chairs in it. Stuffed animals stared at us with unblinking eyes from the corners of the room, and Erik asked for the one that resembled Cookie Monster. We waited for the hygienist to arrange her tools on a tray, and I winced when Erik pressed Cookie Monster's stomach and the toy began to laugh, shake, and talk. Erik jumped but laughed in response. I noted that the voice wasn't right at all. He sounded more like Krusty the Clown than a proper muppet. As Erik ran his fingers over his belly, the blue creature chuckled through a voice that sounded wounded by a three pack a day habit. I shuddered. Boy, this place really tended to give me a case of the freakies.

The hygienist, a very attractive, young woman began to talk to Erik. His anxiety visibly ramped up, and he asked to go play. She yarded a length of hose towards her, and at the end of it was a rotary cleaning tool. I felt my own anxiety level spike. I felt like blurting out that we had never used these tools before, but I refrained. There's a first time for everything. Instead, I asked her if it was loud. She said it was not, like all well-meaning people do before firing up power tools and other construction equipment in small rooms with us. She used my hand to show Erik it was harmless, pressing it into my index finger (Note to self: Get manicure before seeing Dr. Mike and his staff). Although Erik did remarkably well, I began to suspect she had not seen the notes in the chart and was unaware of Erik's noise sensitivity or his syndrome. I'm not sure if it was Erik or my reaction that caused her to put the cleaning tool away, but she soon tucked it back into its holder and moved on. She let Erik drink from the little tool that dispensed water and showed him the vacuum I call "Mr. Thirsty." He was mildly amused but still squirmed in his seat, asking for wheels to spin. She held up about 14 colorful toothbrushes and asked him to pick one. He simply sat in his chair and stared at her. She said something about Spongebob, and he repeated what she said, not seeming to know what else to do. She selected two with Spongebob on the handles, and I asked Erik to point to the one he wanted. Again, he sat there quietly without moving, and I silently cursed this whole ridiculous process. My patience was waning. I wanted to scream, "Just give him the f*cking toothbrush, lady. Erik doesn't even know who Spongebob is!" But, as I am generally very polite, I did not. I smiled and quickly selected one myself. She then asked Erik if he took vitamins, and I calmly explained that I was not to give him vitamins because of the syndrome he has. I did tell her he took fluoride. She then "cleaned" his teeth with his new toothbrush and regular children's toothpaste, which Erik has also never had before. I could read his mind as he smacked his lips and tried to politely hide his disgust. As he looked up at me, I could see his thoughts very clearly (Spicy!). The hygienist finished up, examined Erik's chart, and passed Dr. Mike, who was emerging from an exam room containing a boy lying flat with a nozzle dispensing gas affixed to his nose, making him look like a suckling pig atop a dinner table. The people around the boy cheered him on enthusiastically, as if he was playing a contact sport.

The hygienist let out a whisper-hiss to Dr. Mike as she went by.

"HE HAS WILLIAMS SYNDROME."

Dr. Mike approached us next. My enthusiasm for his technique has dwindled a bit. He tends to be quite rough, although he is efficient, and uses the word "pretty" to describe everything: My hand. Erik's head. Erik's teeth. His hygienist. Hella creepy. However, he seems to know his stuff, even related to Williams. He talked through his giant, gleaming grill of white choppers, as usual, and examined my "pretty" hand for Erik with his tiny mirror on a stick. I again kicked myself for not at least trimming my chipped nails. Erik was not impressed with this dog and pony show but for the first time opened his mouth as instructed and let Dr. Mike count his teeth and examine the enamel. He said, "Wow. Good job, mom and dad." When it was finished, I couldn't have asked for a better outcome.

The dental hygienist asked if it would be okay if Erik got a balloon, and I said yes. She gave him a rubber duckie, too, and he said, "Put it away, Mama?" This amused me greatly, and I tucked it in his little plastic bag she handed me. After scheduling another Dr. Mike experience in six more months, we emerged back out into the waiting room, and I shuddered, feeling slightly physically violated for some odd reason. I said, "Erik, let's get the heck outta this place."

Erik looked toward the front door and smiled, cheerfully greeting Dr. Mike's next victims as they made their way in from the parking lot.

The Dentist

I imagine that going to the dentist for the first time with your child is a challenge for anyone. When your kid has WS, however, it puts a different spin on things. You are frightened of hearing what the dentist has to say about your child's teeth. You don't know if he will mention words like microdontia, enamel hypoplasia, or hypodontia. There are frightening photographs on line of anonymous children with teeth that look monstrously abnormal. Not only are you afraid of what the dentist will see, you are afraid your kid's permanent teeth might simply not exist beneath the surface. Not only do the medical issues bring great anxiety, there is also the fact that you are exposing your child to a new environment filled with crying children, an obscene amount of overstimulation, and shrill noises you would normally avoid at all costs in the Williams world.

Brian met me at Erik's school, and we left Erik's class early this morning. I found myself in a horribly surly mood in parent group, anyway, and the less I said, the better. I was feeling anxious and angry. When we arrived at the dental office, we sat in a small waiting room that was obviously once intended to be an exam room filled with magnetic sketch boards, stuffed animals, books, and tiny padded chairs in primary colors. Everything looked impossibly clean to me. Erik had long ago lost the will to focus on anything for more than five seconds at at time by now. He was squirmy and agitated from his lack of nap. The two dental assistants helped with paperwork and led us to an examination area where oldies music blared and another army of stuffed creatures and glassy-eyed dolls lined the walls. Dr. Mike soon made his appearance.

I find it necessary at this point to identify two things that bug the dickens out of me:

(1) People who call themselves "Doctor" followed by their first name. I find this exceptionally pervy, even in a pediatric setting.

(2) The fact that any given dental office can't seem to effectively function without "Hang on Sloopy" blaring at full volume.

Okay, I'm done venting now.

I expected "Dr. Mike" to be 12, maybe 13 years old by the sound of his name. My first thoughts when I saw him: Ah, crap, he's old. What if I like him? Is one more person in my life going to leave me hanging and let me down? I reassured myself I would detest the man, who would know nothing about WS and talk to Brian about golf instead. He was a strikingly handsome man in professional attire, including an actual tie, and an unnaturally white, straight set of choppers. Silver fox, indeed. But I digress. He talked to us about five prior WS patients of his, and Brian and I bit our tongues trying not to bombard him with questions about where they lived, how old they were, etc. We hear about people with WS as if they were mythical, like unicorns. We have yet to see one who lives here. We talked about acid reflux and its devastating effect on enamel. Dr. Mike explained there was no guarantee Erik's permanent teeth exist under the surface but that at least the front teeth likely would come in when his baby teeth fell out. He said that x-rays to find out which teeth were going to come in would not be of much use, as they wouldn't create teeth that weren't there. Time would tell. He said that there have been great advances in porcelain veneers and that most cosmetic issues were fairly easily rectified.

He had Erik lie back on Brian's lap, and he showed Erik on a doll how he would examine his teeth, which seemed utterly ridiculous until Erik seemed to be watching and said, "Teeth." Erik whined and cried a bit as Dr. Mike pried his mouth open with gloved fingers and looked inside on two separate occasions with a breather for Erik in between.

At the end of the exam, he said he was "thrilled" about Erik's teeth. They were in great alignment and were not decayed. Erik will likely need braces as a teen, but he explained his WS patients in the past had been eager to achieve a perfect smile. We will have to go to the dentist every four months for now to coat Erik's teeth with a special fluoride lacquer of sorts to fill in weak spots and protect them from damage. He gave us a printout of the WSF website page on dental anomalies and went through each of them with me, explaining that Erik looked extraordinarily better than the examples provided.

Erik was given a small, stuffed baseball, an orange balloon, and a photo of himself enthusiastically labeled "Erik's First Dental Appointment!" by the assistant. We were given terrycloth finger cots to clean Erik's gums, some plastic mirrors to examine his mouth, and a Blue's Clues toothbrush. He said that Brian and I were doing everything just right, and I shook his hand at least three times, although I felt like grabbing him and kissing him directly on the mouth. With tongue.

Most of my fears had evaporated by the time we made it to the parking lot.