Patience

Don't worry, Mommy. Be patient.

-- Erik Quinn (June 5, 2009)

Erik is now allowing me to lead him to the bathroom and lift him up onto the toilet after he gets up some mornings. This occasionally requires me to sing, dance, and basically perform the world's dorkiest one-woman show, but the results are more than promising. If there's one thing I have learned about WS, it's that distraction is sometimes key while performing difficult tasks like this, as it wards off cranky fits. He has resisted the whole toilet training process with gusto up to this point.

He remains relatively passive in many activities of daily living, and this is no exception. His balance is not dependable, and his motor skills are lacking, making toileting extremely difficult for him. However, he will aim to avoid making a mess, flush the toilet once I lift him off of it, and place his hands in the sink to allow me to wash them. Strangely, he doesn't seem to understand how to perform the motion of rubbing both hands together to get them clean, although he moves his fingers around in the air a bit and attempts to go through the motions he knows he is supposed to do. No amount of coaxing, teaching, or encouragement seems to bring things like this into his realm of understanding, although I go through the motions I am expected to as a parent as well, hoping it will sink in. Only time seems to bring resolution to some of his most basic challenges.

In the meantime, I watch other children his age or younger use the bathroom completely independently, including easily manipulating their clothing. As the children around us grow, I realize how far we have yet to go.

I try not to let it get to me. I really do.

I am an expert at changing diapers now, as I have been doing this for almost five years. I would be lying, though, if I said that doing this isn't horribly depressing. It is for this reason that the little steps we take forward are very rewarding indeed. We will get there with time.

It all comes down to being patient.

Toilet Humor

Toilet training has come to a screeching halt here once again. Erik's child-size toilet seat has quietly found its way into the back of the cupboard under his bathroom counter. The other night he dug it out for old time's sake and brought it into the living room. He was holding it up and had poked his face through the hole in its center, resting his chin on the splash guard. He stared at us as we lounged in the living room and seemed to be waiting for some sort of reaction.

After a moment of silence, I said, "Oh, Erik. Why don't we put that back where it belongs?"

With a hopeful tone in his voice, he replied, "Am I the letter A?"

I paused and pondered what he had just asked. In my opinion, I thought he looked more like the letter "O" with the plastic bum gasket tightly framing his adorable, fair face.

And then it came to me.

His Sesame Street DVD. The one on the alphabet starring Nicole Sullivan and Stephen Colbert.

I burst out laughing.

Number One!

I tricked Erik into sitting on the toilet, explaining it was just easier for me to undress him for his bath that way. He was less than excited about sitting there and even said a little "no" under his breath, but he ultimately seemed to accept my explanation, letting me peel down his shorts and take off his shoes. I let him listen to the water run, and then it HAPPENED. He went! Horrified, he stopped midstream, but I cheered him on, and he finished emptying his bladder. I let him flush the toilet and made up a song for him on the spot, including "hoorays" and vigorous hand motions, which he found highly amusing and asked me to repeat.

I have never been so dang excited to see a man use the facilities. Seriously. It was one of the most beautiful things I have ever seen.

I immediately called my parents. My mother answered, and after my description of what had happened had been relayed on the other end of the phone, I could hear my father whoop with joy in the background.

Beautiful.

I'm Alive

Life has me in a headlock lately, and I'm exhausted. Although Erik finds himself in a sour humor by mid morning, he still refuses to nap. There is always a silver lining to everything, however. I am no longer trapped in the house until 1 p.m. when my work day begins. I am allowed to pick up work from the medical center anytime after 11 a.m. and often take him with me so that is out of the way for the day, sometimes hitting the grocery store on the way home.

Work has not been going well, to say the least. We are buried, and one doctor in particular is apparently very unhappy with us. My partner is at her breaking point, and the stress is palpable this week. We have been working as much as humanly possible. It is halfway through the month and I have done almost as much as I usually do in a month. I worked like a fiend yesterday afternoon and was able to enjoy the evening, which was wonderful. There is much more to do this weekend, but I hope to escape downtown for a bit this evening to have a margarita and some peace.

Last night Brian's friend Ben spent the night. He is some sort of automobile broker and was in town to deliver a truck. I barbecued teriyaki steak/vegetable kabobs and shrimp. Thankfully, I added the shrimp because Ben gave up beef months ago, being from Fiji and wanting to respect his Indian customs and beliefs. In my defense, the last I knew, he occasionally enjoyed a juicy hamburger. I had no time to bake yesterday with pool therapy, work, and errands and was forced to purchase a bag of sourdough rolls, which Erik thought were the nastiest things ever, and some sort of fluffy, swollen chocolate confection for dessert. I was quite surprised when Ben told me he did not eat chocolate, as it reminded him of a horribly traumatic childhood memory in Fiji. After hearing this story, I gave up chocolate as well. We really need to have our friends over more often so I get a feel for what to fix! Despite my culinary setbacks, we had a lovely dinner in the dining room by the light of the setting sun, and I eventually left the two old friends to chat into the night. As I am fighting a nasty cold, I took a shot of NyQuil and dreamed I was behind my counter at the drugstore again, advising a woman to consult the mall directory for a store that might carry an item she needed. Too real.

This morning Brian left for work and Ben began searching on the Internet and phone for another vehicle to purchase to take him back over the mountain. While he did that, I decided to work out. I have adopted a new fitness plan that has been going quite well for me lately without two days of headaches following each workout. In the middle of my workout I glanced into the kitchen and saw Erik dry retching with his hands covered in a mysterious orange substance. I pressed pause and ran to find Gracie-cat was ill and her bottom had overflowed on the rug in front of our house guest, who was obliviously professional on the phone but politely covered the mouthpiece and asked if he had spilled his coffee (Side Note: Do men smell anything at all?). This is a perfect illustration of how my life has been lately. I washed Erik off in the bathroom and returned to scrub the rug with Pine-Sol as Ben continued to wheel and deal. Sigh. I finished my workout and here I sit.

Speaking of housebreaking, I have gone through the stack of literature regarding toilet training. According to these handouts, our son is not remotely ready. However, I was quite amused to read information on toilet training pertaining specifically to Williams syndrome. Did you know that kids with WS often need to urinate more frequently than other children? Also of note was this:

...other methods may be needed. One such method is a pants alarm. This consists of a sensor which is attached to a pad that is inserted into the child's pants.

Uh...

That's just what Erik needs. A shrieking alarm emanating from his own crotch. I have enough trouble keeping up with the failing batteries in the toys and electronic devices already in this house, let alone in my own son's britches. The handout goes on to assure the reader many noise-sensitive Williams children are successfully trained this way. I can't help but wonder what kind of issues one would develop regarding bodily functions as an adult after that kind of childhood memory. On further thought, maybe it would create the opposite effect. Perhaps one would proudly and loudly announce from their office cubicle each time they wanted to use the restroom, much to the delight of their coworkers.

For the record, I am not going to find out.