The Cicada

It's strange to see the feelings you have experienced written down by someone else. To see your story told by another family. Many of the details may be different, but the women who have shared their stories with the world make me realize that parents like me have gone through almost exactly the same thing before me, and there are parents to be out there who are about to go through hell after me. We are all singing verses of the same song at different times, like singing rounds. It's horrifying and validating at the same time.

This is a beautifully written account of another story like mine. It is a heart-wrenching piece written by Jenny B. called The Cicada. Many of us seem to mourn the loss of the person we thought our babies would become, but I have learned that we also mourn the loss of who we used to be pre-diagnosis. That's exactly what I have been doing for the past couple of years.

Three Years

I found God on the corner of 1st and Amistad
Where the West was all but won
All alone, smoking his last cigarette
I said, "Where you been?" He said, "Ask anything"

Where were you when everything was falling apart?
All my days were spent by the telephone that never rang
And all I needed was a call that never came

-- "You Found Me" (The Fray)

Today marks the third anniversary of the day we drove to the children's hospital and made our way home through the rain with Erik's diagnosis. At the two-year mark, I felt a sense of triumph, but this year I mostly feel exhaustion. I suppose this day will feel a little bit different each and every year.

I knew we were about to receive a diagnosis that day. In my heart, I even knew which one. When the geneticist handed me a stack of papers identical to the one I had printed out at home, being correct didn't soften the blow a whole hell of a lot. I was just acutely aware of the fact I was about to be sucker punched in the gut. I saw the doctor's lips moving, but, quite honestly, all I heard after the words "mentally retarded" was hissing static. My life would never be the same.

Some of the sharpness of that afternoon has begun to fade, but the day will always feel dagger-sharp to me. The way the exam room smelled and felt. The pounding of my pulse in my ears. The sudden heat in my cheeks. The tears that began to spill and wash away my composure, despite my premeditated plan to contain them. The way my blood rushed from my limbs and poured into my core as if I had just sustained a life-threatening wound. The people who seemed to examine our family as if we were grainy pictures in textbooks. The scream of despair that lodged in my throat as we sunk into the hospital lobby on the elevator. The call I made to my mother as we drove out of the city. Each and every song that played on the radio. Most of all, I will never forget the way I couldn't shake the feeling that a filthy parasite had woven itself into my beautiful baby's body and the desire I had to rip it out of him and make him clean again. Crazy, I know.

There are some things I will never forget, no matter how hard I try.

I view each anniversary as an accomplishment, too. I have one more year under my belt. This time around, though, it's different. Looking back, the last three years feel like three hundred. I hate that I'm still a rookie at this and that I still have any grieving left to do. This year I didn't stop to grieve much on a daily basis, so I suppose this makes stopping to recognize my feelings more difficult than I had imagined it would be.

I am thankful the thick wall between me and Erik has finally begun to disintegrate. We have begun to mix with the rest of the world to the best of our abilities. We are beginning to talk to each other on a new level. We sing at the top of our lungs in the car to songs about tractors and drifters and girls. We laugh until our faces hurt at our own private, primitive jokes. He delights the people around him, and he is genuinely delighted by them. He has opened my eyes to the world in a new way. I want to see the world through his eyes.

However, this diagnosis is exhausting. There are the health problems that threaten to emerge around each and every corner. The cognitive difficulties that frustrate Erik and cause problems at home. The raw, unbridled emotions just beneath the surface of him that are triggered by the tiniest misunderstanding of how the world works. The days he is bent at the waist to examine the wheels of each vehicle in clinic parking lots as I try to rush us to appointments. The way he clamps his palms over his ears every time I pick up an unfamiliar object. The way he talks about vacuum cleaners, fire alarms, tractors, and all-terrain vehicles 24/7. The way he asks me twelve times a day if the car will start, even though it has been two months since the morning my Jeep's battery died.

Worst of all, there are now days I feel the weight of the stares of strangers. Some days I want to take him firmly by the shoulders, shake him, and scream, "ACT NORMAL!"

I sometimes hate what this diagnosis has done to me.

Would I change things if I could? I'm grateful I don't have that opportunity because I can't promise you I wouldn't. I will never be the person I hoped I would be. The woman that causes people to look at each other and whisper, "She is so amazing. She never complains and always has such an positive attitude." Williams syndrome has robbed me of what remained of my innocence and threatens to drain my already brackish reservoir of optimism. It has hardened my personality and softened my heart at the same time. I hate it, and yet I love the people it has brought into my life. I love the way it has helped shape my son's wonderful personality, and I hate the fact it will make his life incredibly difficult and invite ridicule from some.

Feeling two opposite things intensely on a daily basis is pretty damned exhausting.

So here I am. Who knows where I'll be next year.

Shoes and Socks

Let it go
Let it roll right off your shoulder
Don’t you know
The hardest part is over
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

-- Rob Thomas "Little Wonders"

I went to Payless Shoe Source yesterday and explained my orthotic-related plight to the salesperson there. She nodded at me and went on to explain that they used to make shoes parents like me bought that accommodated the bulk of orthotics beautifully, but they were no longer available. After trying several pairs (I couldn't help but notice the boys' section paled in comparison to the gigantic display of princess-pink shoes for girls), we found one last pair of Air Walks, the shoes she had referred to. They were white with awful, goose poop-colored camouflage strips across the midfoot and two sizes to big for him in order to accommodate the hardware I would place inside. Camouflage on a 3-year-old. How appropriate. Would this little detail make his orthotics invisible? My high school marching band shoes were delightfully dainty compared to these. Six dollars. I accepted the shoes and drowned my disgust in purchasing a pair of black and tan slingback heels with bows on the toes for myself.

From there, I went next door to the sporting goods store. It wasn't open, so I sat in my Jeep and watched an employee come out with a push broom, running the bristles over the sidewalk and pretending a girl sitting in her vehicle staring at him was the most comfortable thing in the world. When the doors were unlocked, I gathered my plastic bag containing Erik's braces and hunted down another employee to assist me in locating children's soccer and baseball socks, the only socks that seem to have the length to protect Erik's skin from the plastic on his legs. I would have tried them before, but apparently infants don't normally suit up in team uniforms (like I would know). They were not previously available in Erik's size. I ended up with two pairs of all-purpose athletic socks in white.

As it turns out, the socks look a lot like thigh-high stockings on Erik, but they seem to stay up. He wore his new orthotics for an hour yesterday. I crammed his feet into the new pair of giant shoes, trying not to curse under my breath, fastened them as best I could, and set him in a standing position on the ground.

I began to laugh.

He just stood there with his legs slightly bent, looking up at me as if he was afraid he was going to float away. I reassured him that he would get used to them eventually. He tentatively put one foot in front of the other and made it across the living room two inches at a time. I couldn't help but think of the time I put a sweater on my cat and watched her try to walk in it. Erik stooped to pick up a toy successfully and seemed to be as comfortable as anyone would be with sections of stovepipe around the legs.

Mission accomplished.

I was alone for most of the day yesterday. After dropping Erik off at school, I found myself with a sloshing bottle of Windex in one hand and a rag in the other. When I'm emotional, I clean. If you see me spritzing things with Windex, it's a positive sign. It's levels below angry vacuuming in terms of emotional distress. My roommate in college knew to stay miles out of my way when I was using a vacuum cleaner.

I was yanking food from the glass shelves of our refrigerator to make way for my mad cleaning spree when a Rob Thomas song came on the radio. I have heard this song a thousand times, but I never really listened to the words before. On Diagnosis Day, however, the words sunk right into my heart, and I smiled. I realize there is meaning in all of this, and sometimes I can catch a glimpse of it before it all fades into a big, dark mystery again. Once in a while, I can hear whispers that seem to be meant for me and me alone. Maybe I am going nuts.

You are doing the best you can. What you are doing is important.

Now that's what I call progress.

Two Years

Two years ago today my life without Williams syndrome took one last dying gasp and faded into my personal history. Time of death: 2:15 p.m. I was absolutely devastated, and the tears began to fall. I continued to cry for nearly an entire year. This past year was much easier than the first, and I am thankful for that.

It's funny. I can't really remember exactly how life felt before that rainy afternoon in a stuffy examination room at the children's hospital.

WS makes its presence known to me daily, whether I want it to or not. Because of it, we struggle in so many different ways, but I notice I smile through a lot of it now, even when things are extremely unpleasant or difficult. Either I can handle it, or I'm going completely crazy. Either one is okay with me. For example, I noticed yesterday the way I loudly announced each and every time I blew my nose or flipped on a noisy appliance, whether Erik was visible in the room or not. This habit apparently developed unnoticed over the last few months. I previously avoided making much noise around Erik at all, but now that he is adjusting to how noisy life can be, I simply give him a courtesy warning, as if I am yelling "fore" before chopping at a golf ball with a long iron. This practice may seem bizarre to others, especially if Erik isn't even home, but I seem to have forgotten to care anymore. I do believe that's what we call progress.

If you visit our home, you may hear me yell --

"I'm going to blow my nose now!"

"I'm brushing my teeth now!"

"I'm turning on the garbage disposal now!"

"I'm chopping walnuts with the food processor now!"

If Erik is near, he will react by turning my direction, dropping what he has in his hands, and immediately covering ears with his palms.

I just don't think about how I felt before D-Day much anymore.

There's no point.

Because life should and does go on, even if we clamp our hands tightly over our ears.

New Diagnosis

GRACIE UPDATE: The blood test results are in. My half-feral, clinically obese cat has HYPERTHYROIDISM. Hyper. How this happens in a cat her size is beyond me (and even the veterinarian). I am now required to administer medication to my pet just as many times daily as I am to my own son with special needs.

Oh, sure, I was in need of a good distraction from my problems this holiday season, but figuring out how to give this nasty beast a pill twice a day is a bit much. I tried canned food yesterday, and she wasn't having it. She hates meat. She loves margaritas, but somehow I think that might create more problems.

Hopefully, her daily diarrhea will cease now and she will be more comfortable. I'm half-afraid she will become pleasant and agreeable, as we all have endured 10 years of feline freak show at this point. Time will tell. If I didn't love her so darned much, I wouldn't go through all of this. But I do. She is a reminder of much simpler times and doesn't mind being crammed in my armpit at night for a good cuddle.

Wish me luck.

Autism Awareness Month

The whole "autism spectrum" thing has proved to be confusing to me. According to the Autism Society of Canada, the word "autism" refers to autistic disorder AND all autism spectrum disorders (ASDs). By this definition, Erik would be classified as autistic. Unfortunately, it's not that simple. I have been told by several people that WS falls into the autism spectrum, and I can clearly see Erik has autistic behaviors/tendencies, some of which are virtually debilitating at times. It is also clear the word "autism" covers a wide variety of diagnoses, from Rett's syndrome to Asperger's syndrome. However, WS does not fit into the five pervasive developmental disorders (PDDs) listed by the Autism Society of Canada, including childhood disintegrative disorder, Rett's syndrome, autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome, although we were initially given a diagnosis of PDD-NOS (the FISH test eliminated us from this category). The definition below seems to kick us out of the ASD category completely, as ASDs are classified as PDDs, which, as I stated above, this particular resource does not seem to consider Williams syndrome to be. I guess it depends on whom you ask. I can see there are some autism-flavored quirks in my son and am comfortable stating Williams syndrome is an ASD. It is pretty obvious to me.

To make a long story short (too late), I feel like we don't truly fit anywhere with this damned diagnosis. Or, even worse, sometimes I feel like we fit to a small degree everywhere. Will Erik be mentally retarded? According to what I read, it's almost guaranteed. The severity of his disability remains to be seen, which is part of the special torture of being a WS parent. Time will tell. But wait -- not only do we have a child who isn't "typical," his mental retardation will prove to be out of the ordinary as well. He will likely have grossly asymmetric cognitive skills. Some people may never guess his brain doesn't work like it should, as he might seem even more intelligent than a typical child when he speaks using an incredible vocabulary and demonstrates an unusual interest in people. On the other hand, one might at first glance consider him severely retarded, as he may have difficulty tying his shoe or doing something we all take for granted. He will likely be neither of these things. In addition, Erik will likely require and desire more than special ed classes but more assistance than would be normally provided in the mainstream classroom. At this early point, I'm not sure where we are going to fit, so I am forced to conclude we will need to blaze our own trail. I'm okay with that, but I can see a very long road ahead of us.

Where does that leave us on the autism spectrum? I do believe we belong on the spectrum becauase of certain behavioral characteristics Erik has clearly demonstrated. However, with time these seem to be disappearing. Will these be replaced by other more mature tendencies? It will be interesting to see if he demonstrates any new autistic tendencies with time. Williams is one bizarre syndrome.

Erik's Aunt Dawnita reminded me it is Autism Awareness Month, and I feel it is important to take notice of this mysterious diagnosis and the millions of children on the spectrum. A big thank you to our families for keeping up to date on WS by keeping your eyes and ears open for information on WS and all ASDs. Most importantly, thank you for talking to others about WS and providing education about this diagnosis in our communities.

From Wikipedia: The autistic spectrum (sometimes referred to as the autism spectrum) is a developmental and behavioral syndrome that results from certain combinations of characteristically autistic traits. Although these traits may be normally distributed in the population, some individuals inherit or otherwise manifest more autistic traits. At the severe end of the spectrum is low-functioning autism which has profound impairments in many areas, to Asperger's syndrome, and high-functioning autism, to "normal" behaviour and perhaps hypersocialization on the high end of the spectrum.

In the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and the International Statistical Classification of Diseases and Related Health Problems (ICD-10), autism spectrum disorders (ASD) are classified as pervasive developmental disorders (PDD), as opposed to specific developmental disorders like dyslexia, dysgraphia, dyscalculia, or dyspraxia.