Spread the Word to End the Word

Be the change you want to see in the world.

-- Mahatma Gandhi

Today is Special Olympics' "Spread the Word to End the Word" day. They are collecting pledges on their website from people who vow not to use the word "retard" in a demeaning, hurtful way.

If you haven't heard Soeren Palumbo's speech honoring his younger sister Olivia, today is the day to listen to it.

Obsessions 2009

Erik's current obsessions --

* Vacuum cleaners. The first thing he usually asks a stranger is whether or not they have a vacuum cleaner. If the answer is yes, which it most likely is, he will ask if there is a light on it. I'm surprised how many don't these days. I bought him his very own toy vacuum cleaner (with a light on it) and let him use mine from time to time.

* Lights. Especially lights on vehicles, my camera, and, of course, vacuum cleaners. He likes flashing lights, especially on emergency vehicles. Our neighbor is a policeman, and he stops occasionally in front of the house to turn on the red and blues for Erik. Many people who visit have learned Erik watches them back out of the driveway when they leave and will turn on their hazards or flash their headlights for him. His daycare provider even reminded me to do it the other day when I dropped him off, as Brian apparently does this as well when he takes Erik on a regular basis.

* Wheels. This used to be number one. He will still stim from time to time by spinning the wheels on toys, but not nearly as often as he used to. He inspects the wheels and tires of vehicles in parking lots and likes to say "lug nuts," which always makes me laugh for some reason.

* Fire alarms. I am unsure how he knows what a fire alarm is, but he does. He locates them in each new building we visit and points them out to me and anybody else who passes by. He seems to want reassurance from me that they will not make noise.

* Whether or not our vehicles will start. Yes, he is STILL obsessed with this. A friend of mine was helping me put him in the car the other day and was surprised when Erik freaked out as my key entered the ignition. He also closely watches the dome lights in my vehicle. They apparently flash on and off briefly when I start the engine, which is apparently an indicator of whether or not my Jeep has enough juice to run. He wakes up sometimes talking about my Jeep and if it will start.

* Sirens. This is also making its way down the list. While a siren used to send him into hysterics, making fire season hell on earth in our house on the edge of town, he usually only obesesses about whether a siren might sound when he is very tired or half asleep. He still wakes up from time to time speaking about sirens. I'll never forget the afternoon lightning was striking everywhere and all I could do is blast his stereo and hold him while he sobbed. Thankfully, that usually isn't the case anymore. Sometimes he even enjoys a siren that is far enough away that it doesn't hurt his ears.

There are other things he enjoys but that do not qualify as obsessions. Normal things like going outside, eating a nice, steaming bowl of Malt O Meal, holding Stinky-Dog, or visiting his grandparents. His obsession with tweaking doorstops has finally faded into history. He will occasionally tweak one on his way by, but this doesn't make the list anymore (Note to Self: Locate and replace missing doorstops).

I would bet that a lot of your children have had these same obsessions, diagnosis of WS or not. I find this fascinating. I wonder what Erik would have done before the invention of the wheel. I can just see him wearing a brontosaurus skin diaper, rolling the roundest river rocks he could find around over the ground in a stimmy trance.

Deep Blue

I am in a blue mood day. That frigid color the last blue layer of ocean is before slipping into the the blackness of outer space deep beneath the surface. I have remnants of dreams fluttering in my head like laundry drying in the breeze. Dreams I cannot remember but which make me feel paranoid and nervous.

I was brave yesterday and called a friend to meet me and Erik at McDonald's with her children. I was tired of being in the house watching the weather become more gloomy, and the outing actually sounded like fun. I risked the hangover that usually comes with activities with other children.

I always put on my happy face and pretend like it feels like we belong in a crowd of other families, but it still doesn't quite feel that way. I hate the way people look at me and Erik when I am in a vulnerable state like this. I find myself looking for reassurance, lamely asking my friends if Erik has improved since our last outing or nervously giggling at his antics when he approaches strangers with his seemingly helium-infused hellos when all I want to is snatch him up and and protect him up in my arms. He's getting too big for that now.

I purchased a small packet of french fries, which ended up being a very generous portion, and Erik ate them with gusto, growling wildly for effect and smiling at me as he did so. I hand fed him three-quarters of a hamburger that I tore into small pieces while the other children expertly consumed their lunches with little assistance. My friend and I spent some time standing outside the play structures supervising the children and catching up. Despite an invitation to play hide and seek by his friend, Erik refused to play inside any of the brightly-colored plastic tubes. By now, his friend is accustomed to this and continues playing without him. Erik did venture just inside the entrance of a couple of play tubes and sprawled out on his stomach on the floor, creating a living speed bump for the other children who entered and disappeared above him. At one point, Erik watched his friends playing inside through a window and joyfully rapped his fists against the plastic. I felt like he did, only much less happy about it.

Forever on the outside looking in.

After lunch, my friend treated all three children to towering vanilla ice cream cones. Erik can't hold an ice cream cone and eat it at the same time without dropping it like other children seem to be able to do. I held it while he scooped bites with a spoon and became slightly angry with me and the whole process. It seems he is beginning to compare himself with his friends for the first time. I'm sure this will speed his remaining developmental milestones, but I am watching the seeds of frustration and the falling away of the ignorance regarding his differences being planted. That frightens me.

I don't want him to know he is different. Ever.

I don't want him to feel the things I do when I walk into a room filled with children. There is nothing I can do, though. It's coming whether I want it to or not. If I'm lucky, I will always be there when he turns around for reassurance and strength. I know in my heart this is what I am supposed to do, and if I don't have the strength to do it, I will borrow, beg, and steal it from somewhere. It's my job, and although it is scary as hell, I am incredibly good at pretending I'm a lot stronger than I actually am. I always have been, even before Erik. I should have been an actress. I just know that sometimes when I pretend I'm okay, I actually begin to believe it after a while.

Over the last couple of years, I have watched the parents of other children with disabilities take their kids to parties and parks and schools. Through the sharing of their feelings, I understand that this sense of not belonging will never completely fade. We will always feel a little bit like we are rapping on a window from the outside. I now have evidence that it becomes more tolerable. This is in the phone call I made to my friend to initiate this outing. That's something I would not have easily done, even in the recent past. It's easier because my friends have proven that they will support me, no matter what. I will continue to paste on pink, lipsticky smiles and take away the precious memories I would not have dared to create for me and my son if I had never left the house. No matter how scary it feels. I am incredibly proud of myself for pretending to be that brave. Amazingly, I'm starting to believe it.

But the ache that resides in the deepest part of me will never completely fade.

And that makes me incredibly blue.

My Life in a Nutshell

This is a video of me and my guy hanging out in the living room. When your child has little to no interest in toys, you learn to make your own fun. The flaccid, taupe-colored item that looks like a wet rag is Stinky Dog. You can tell when Stinky is speaking or singing, as his voice is a few octaves below ours.

Erik loves all animals except for my Gracie-Cat. Seeing her when he comes home from school actually makes him agitated. They steer clear of each other, which works pretty well. However, Erik has decided that Gracie does not meow but emits a sound best described as "ROUNCH." For this reason, instead of using her name, he calls her "Rounchy." My cat is the only feline I have ever known that can be infuriated purely verbally. The ending of the video reminds me a bit of the tragic documentary Grizzly Man. However, there were no animals or children injured in the making of this film. Sadly, I am another story entirely. This is why I keep Bactine on hand.

"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.

I'm Climbing

We took Erik to the park yesterday. I could not believe my eyes. He did this over and over again by himself for the very first time. I can't believe he is playing around other children now.



Friday was very difficult for me, but everybody around me seemed extra nice, even without knowing I was having a hard day. Things that happened:

* After I dropped Erik off at school, I received a text message from my neighbor thanking me for working out with her during the week. She said I inspired her, that she loved me, and that she wished she had joined me sooner. I have to admit, I have never laughed so hard while exercising. The day we sat on exercise balls to work out was the day I almost ruptured my spleen laughing.

* After that text message, my cell phone rang. It was my friend with ALS. He successfully completed a stationary bike ride at the physical therapy office to qualify for an ALS study in Texas after two previous attempts fraught with exhaustion and gross error on the part of the medical staff. He was elated, and his spirits were finally up.

* The phone rang when I got home, and it was Erik's teacher. She was very excited and wanted to share a story with me. They had a little white and tan rabbit visit the classroom. I have witnessed the way animals react to Erik, and I smiled, knowing what was coming. Each child was allowed to hold the bunny. She said it was quite twitchy and nervous, but as soon as it got to Erik's lap, it became incredibly calm, even with Erik touching it exactly like the other children had. She was amazed and told me it seemed like the rabbit knew he was special. He then bent down and whispered, "I love you, too" to the creature. She said it was one of the sweetest things she had ever seen and that they all love my child so much.

* When the school bus came to drop Erik off, his backpack was MIA. I told the driver that it was probably still at school and not to worry. Twenty minutes later, the bus came rocketing back up my driveway. She had apparently found it and delivered it to my door.

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.

Blood Pressure Followup #1

I'm taking Erik in for a BP check today. Update to follow.

Update: Erik's blood pressure was 106/64, which is a much less frightening value than the last check. I can even find this on the normal pediatric chart, which is a vast improvement from last time. Erik was much calmer during the process, although he was clearly not happy with it, and that seemed to help his numbers. His extensive blood work, including calcium, came back completely normal.

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.

Visiting Darkness

I love Erik so very much, but he is sometimes replaced for days or weeks at a time by someone I don't know. An unpleasant little tyke who argues with everything I say out of pure spite and rages when he discovers he will not get his way. Which is quite often. In the last week, we have gone from one time-out a day to 10 or 12. I have observed that this insanity usually is paired with a jump in his development and/or a growth spurt. While much of his intensely angry behavior is borderline typical, we have concluded that his reactions to our discipline or even our comments to him are definitely not. This is where things become frustrating and wear me down over the course of an afternoon. My state of mind takes me back to when he was an infant and cried nonstop. This is apples and oranges, I know, but I find myself in the same dark place I was before. Because I now am a veteran of this, I either turn myself off emotionally or further immerse myself in the mindless distractions I indulge in regularly to keep myself sane. This sometimes injures my personal relationships, so I try to keep it to a minimum. However, I admit that some of this damage is permanent.

Erik continues to toe walk to the extreme, although we have been unable to measure any increase in his height because he refuses to let us. With his growth spurt, his language has improved to the point where he can come to me and tell me what's going on in another room. That's new. Yesterday he told me the cat was scratching at the garage door. I told him he could let her in if he wanted to, and he disappeared. I waited a couple of minutes and then went to check on him. He actually accomplished this task (which surprised me, as he detests my cat). He is still generally unable to follow two-step instructions. He has also informed me his diaper is wet after a leak, which is promising, as I am hoping he will eventually submit to using the bathroom. It is refreshing being able to communicate this way. Having a two-way conversation is not only handy, it may actually save one of our lives at some point.

Amazingly, he continues to obsess about the day my car wouldn't start and is visibly anxious every time one of us turns a key in the ignition. He rages at Brian when he cannot watch You Tube videos of tractors, vacuum cleaners, ATVs, or washing machines. As soon as Brian steps across the threshold at the end of the day, Erik is on top of him and won't take no for an answer. He will continue to bombard Brian for hours with the same question and will throw a fit every time, as if he has never heard the word "no" before, after which he is placed in his room to rage without the benefit of witnesses. We do this over and over. And over. And over. And over. And over. Once in a while, he will change things up and ask if I am going to start the Jeep. I stifle a scream when I hear this question for the 50th time each and every day. There doesn't seem to be a solution in sight. Ignoring him or changing the subject doesn't seem to help much, although I usually distract him or ask him questions about something else to get us off the same tired topic. No, Erik, you can't watch tractor videos. Yes, Erik, we will start the Jeep at some point today. Would you like to play with trucks? This usually goes over like a lead balloon with Erik, and we begin the whole process over again.

Urgh.

Last night I watched the Discovery Health special on Kay and Flo, autistic savants. They have the amazing ability to tell you what day of the week it was for any date you provide. They are obsessed with Dick Clark and have met him twice. Just peering into their shared world was amazing and fascinating. On the flip side, however, the family members they live with are worn down and about to snap. Kay and Flo function on an elementary school level and are unable to live independently. They were teased so much that their mother kept them hidden from the world for years. The day Dick Clark's $100,000 Pyramid was taken off the air, their lives were completely disrupted. Worst of all, years ago, their other sister came home one day to find their mother had inserted all three of their heads in the oven and asked for the gas to be turned on. The girl cried and begged her mother to stop, and, thankfully, she did, promising it would never happen again. And it didn't. However, she obviously never left the darkness I visit from time to time. There was nobody to pull her out of this extreme situation. No diagnosis. No services. No relief. While her family members described how depressed, mean, impatient, and alcoholic she was before she eventually died, my heart quietly broke for her. I am not so quick to judge anymore.

I have support for the one child with challenges I have. I'm grateful for a diagnosis, services, and my support group. I'm grateful for trashy movies, my exercise DVDs, cooking, beauty salons, friends, and cheap wine. I'm thankful that putting my head in the oven has never been an option (we have an electric one, anyway), but I admit that there are times when I wonder just how much more I can physically and mentally take. I'm pushed to my limit like never before.

At the end of the day, though, the fits stop. My little boy looks up at me and says, "Cuddle, Mama." I turn on his CD player and crawl into bed next to him for a few minutes. He looks into my eyes and giggles, which is contagious. He seems amazed and incredibly overjoyed that I am there with him, which makes me feel like the most amazing mother in the world, despite all of my profound shortcomings and that dark place waiting for me just around the corner.