Erik Quinn: The Heart of a Family: October 2008

Tuesday, October 28, 2008


Erik and I have had two really good days together. We pressed our foreheads together and laughed at our own private jokes. We ate those junky fruit snacks from Costco together in the car and made rude yummy noises. I even slid down the stairs on my bum this morning when he asked me to (Note to self: Never do that again without rigging up some sort of an ass padding system).

I am flying high once again.

I am incredibly thankful for my son. I am also thankful for the girl who found me somehow on line and needed some words of encouragement that I was equipped to provide because of my experiences. I am thankful for the wonderful weather today that allowed Erik to ride his therapy horse outside. I am thankful for the unexpected warmth that washed over me when I told his grandparents of his latest accomplishments. I realized once again how incredibly proud of this son of mine I am. It is an honor to be his mother.

Giving myself permission to express my feelings here, no matter what they may be, has made me more aware of what is right in my life and let me let go of the bad. I hope that my doing this gives others encouragment to do the same. I know that it is sometimes hard to read. This is a total roller coaster, ain't it? I savor every bittersweet moment--tears, snorting laughter, heartache, woo hoo moments, and all.

Erik just ran into my office. He's half awake with his hair in a giant sleep-swirlie and talking nonsense. He made it up the stairs in this semiconscious condition and let me sweep him up in my lap, after which he said, "We're gonna have a BIG CHRISTMAS" and started singing "Oh Christmas Tree." He smells a little like cookies.

I can count my blessings today.


Sunday, October 26, 2008

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.

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Friday, October 24, 2008


Today I sat on the front porch steps by myself. The aspen tree standing guard in the center of a landscaped island heaped with river rocks is gigantic compared to a few years ago. We have a widening spot of cool, delicious shade on our lawn that wasn't there before to document its progress. The leaves quaked and hissed at me in the breeze that chilled the warm air and raised goosebumps on my arms. Robins scolded each other as they searched for worms, and their dorky, round bodies lurched over the grass. I looked for my lizard friend under the yellow, brittle leaves of the shriveled irises next to my feet, but he was gone.

I suddenly remembered moving our things into this house while Erik rested deathly still inside of my belly. I remember the dreams I had back then and how proud I was to tell our new neighbor that we had a bun in the oven (I have always detested that expression but was so delirious that I used it the first day I met them). God, I loved being pregnant. I have never been so utterly, ridiculously happy. People probably thought I was sniffing glue all of the time. Yeah, I was that happy.

What the hell happened to that girl?

Today I found myself wanting to shut the front door to the house and hide behind it. More than I already do these days.

Today was bad.

I tried so hard to get Erik to pick his coat off the floor at school when we arrived, but he couldn't seem to hear me around the other children. Seriously. Complete deafness. He still doesn't understand how to hang up his backpack. After school he staggered and fell off the bus, frightened of the noises the old-fashioned metal fan above the driver's head made. He had asked her to turn it on as he was leaving, and she did, not expecting his startled reaction. She saw his face and quickly promised him she would never, EVER turn it on again, but he was so scared he jumped off the chunky steps right into the air without a second thought. Like a frightened animal. I caught him in my arms, and he struggled to get out of my grip. I almost miss the days he used to let out a simple wail when he heard a noise. He began the repetitious, frantic chanting. "Turn on the fan. Turn on the fan. Turn on the fan." Even though that was the last thing he wanted. She then tried to strap his backpack on over his arms, but I know there is no point. At these moments, I feel like screaming. The bag will sag off his shoulders to the ground, and he will leave it behind without knowing it was even there in the first place.

We finally made it inside the house, and I chopped his peanut butter and jelly sandwich into tiny pieces. He crammed all of them in his mouth, anyway, before he started to gag on them and extracted them out with both hands, spitting them out on his placemat in a slimy, solid bolus for me to clean up. This was after I stood next to him and coached him for five minutes to take small bites. These days he insists on fighting me every step of the way, yelling NO at everything I suggest and asking me thousands of times if he gets to see his grandparents, no matter how many times I tell him the answer. I tried to play with him today, knowing I was only torturing myself. The little moments of connecting with him here and there are sometimes not enough for me. I tried to get him to lead me in the silliness of his choosing, knowing it would fail and leave me more depressed. Instead, he scattered the toys I offered to him all over the floor and left. He would much rather empty my candle cabinet and spin and roll votives around for hours at a time with bright red, wet streaks forming behind him from the toes that don't have normal skin on them to keep the blood on the inside where it belongs. On dark days, I pack frequently discarded toys into boxes and take them to Goodwill or to his school for the children who like them. I can't even bear to look at them.

I hate toys.

I hate playgrounds.

I hate baby showers.

I hate birthday parties.

I hate classrooms.


I hate the fact I want more moments of normal. I also hate the fact I have no desire to get pregnant and do this all over again. But I don't. I simply don't have baby-related dreams anymore. They're history and have been for years. I don't want to pretend I'm not afraid of finding myself rolling around on an ultrasound table in agony experiencing yet one more miscarriage or delivering a child with another chromosomal abnormality. Of failing one more time as a woman to do what should come naturally.

Here's the thing, though: I just don't want to.

Even if I did, everything in my gut screams me to stop. Instead, I want to try to move on and find new dreams that will make ME happy. There is nothing more maddening to be immersed in people who tell you what you should want. What you should do. If you do not want the same things, eventually you begin to wonder what is defective in yourself. And that is not good. I'm tired of explaining myself to people who don't understand. Of defending myself.

I hate the hurt that this decision creates around me in people I love who must remember the girl that used to have traditional dreams. I turned 38 this summer. I hate aging, knowing I might someday be an old woman who might wonder "What if?" Will I hate myself for it later? I honestly doubt it. I am that certain about my instincts. Besides, my pockets are already crammed full of WHAT IFS, and they don't do anything but weigh me down and threaten to help me drown.

Sitting there on the steps, I began a weak attempt to list the good things that have come with the weird directions my life has gone. Nothing (and I mean NOTHING) turned out the way I thought it would, but it's not all bad, I guess. I'm lonely sometimes. I'm horribly depressed sometimes. I find myself incredibly angry sometimes. On days like today. But I can still count my blessings. I have lots of them. They are just more difficult to visualize when the pain in my heart has me doubled over and I'm looking at the ground. I want to curl up in a ball and tend to my wounds on days like today. Autumn is a hard season for me, anyway, because it reminds me of the end of my first pregnancy.

I can count my blessings. And I will do that tomorrow.

But right now I just don't want to.

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Thursday, October 23, 2008

Sweet Perseveration

Erik asks thousands of times each day if I am going to turn the mixer or the washing machine on. I admit that sometimes I feel like using earmuffs or earplugs to escape the repetitious questions after a few hours (the thought of me answering the door with furry earmuffs on is actually pretty funny, now that I think about it). He still adores appliances that spin. I now hoard piles of dirty laundry so I can pop them in while Erik is home to enjoy the machine. He continues to retrieve his fleece blanket and Stinky Dog before making himself comfortable in front of the little window in the washer. Sometimes I hear Stinky Dog and Erik having a discussion about the laundry.

Last night Brian was at a meeting, and Erik and I had the house to ourselves. One of us was a little on the grouchy side, and it wasn't me. I went through my recipe collection, desperately searching for muffins or cookies that don't contain butter or milk, and I finally found a recipe for gingersnaps. Score. Erik was pretty happy about that. He ran through the kitchen screaming, "Mommy's going to use the mixer! Yaaaaaay!" And the house smells lovely this morning. His fascination with my KitchenAid appliance overrules his sensitivity to sound, although he keeps his hands over his ears most of the time.

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Sunday, October 19, 2008

Sticks and Stones

I always wondered what would happen the first time someone called my kid a retard.

The movie Tropic Thunder stirred up a great deal of controversy because of the inappropriate and ridiculously excessive use of the slang form of the word retard. While I agree that this was an incredibly irresponsible, thoughtless decision on the part of the movie makers, I felt nothing more than numbness when I looked up exactly what was said in the film to measure my own reaction. I simply decided that I wouldn't find it funny and didn't buy a ticket. While I admire those who express their outrage about this movie, I didn't find I had much fire in my belly about it at all. If I felt anything at all, it was sadness and disappointment.

I have a long, strange relationship with the word. I likely heard it tossed around casually on the playground and perhaps used it myself, although I cannot remember with certainty. I learned the word "retarder" in high school French class, and I never really thought about anything but its root and correct usage. I just knew it meant "to slow." I can even conjugate it for you.

Later on in my life, the word and its medical meaning seemed to easily tumble out of our geneticist's mouth when Erik received his diagnosis. We were told that although our child would have strengths, he would be retarded. Slow. He explained the levels of what he kept calling "retardation" and where Erik would possibly be compared to other syndromes. It was a complete slap in the face for a fairly new parent who thought Erik's strange difficulties would fade with age, and perhaps the numbness began to set in back then. The word still echoes in my skull, even after all that time. Since then I have wondered when someone would use that word outside of a clinical setting to refer to Erik. I have secretly dreaded that day.

Recently I received an e-mail indicating that someone had left a comment on one of my You Tube videos. For the first time since November 6, 2006, the day I opened my account, I saw an ugly, negative comment underneath my favorite video. The one of Erik eating lunch.

It finally happened.

However, it did not happen the way I imagined. Not even close. There was no insult hurled at Erik on the playground. Instead, the word was quietly injected once again into my life on line.


In addition, it wasn't even the "R word." In fact, I had no earthly idea what the word in front of me on my screen meant at all. I actually had to look it up.


According to, this word means: A person with mental health problems, i.e. Down syndrome; or retard for the lay person.

The examples listed were: Hey why do all the water heads work at McDonald's; Someone stop this water head from humping my leg; That effing water head just pooped his pants.


I stared at the word and the horrible examples on the screen. Although I admit that I felt a wave of nausea wash over me for a split second, I didn't cry. I absorbed the word, got up from my computer, and went on with my day, feeling a tug on my heart now and then. In the coming days, I thought about it from time to time and shared my feelings with a couple people close to me. Did it hurt? Yes.

Did the world end?


To the jerk that left the comment: Thank you from the bottom of my heart. Although you have been blocked from my account and your comment has been deleted, the first time for me is over and done. I never again have to wonder when that horrible moment will come. If the word or one like it does come floating through the air from someone on a playground or in a mall, I will be that much more prepared. I feel as if I survived some sort of strange initiation and expect that although things may be more personal and more difficult next time, I am certain that I can and will survive. I'm not the sobbing heap of mother that left the children's hospital with her baby wearing a new, ugly label that rainy day two and one-half years ago.

Words are just words. But words hurt. They do. I have attempted to remove the ugly ones from my own aging dictionary of slang and encourage others to do the same. I don't want to give them any more power than they already have. And I have as many or more powerful words in my arsenal to counteract the nasty ones, attempt to make a small difference on this planet, and soothe the hurt that comes with the ugly as my son is exposed to more of this world. The good. The bad. And the very ugly.

And I know that no matter what happens, my world will not end.

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Wednesday, October 15, 2008

True Love

I owe it to myself to tell you that if you're taking the whole tribe cross-country, the Wagon Queen Family Truckster is the way to go. You think you hate it now, but just wait until you drive it.

-- Ed the Car Salesman (Vacation, 1983)

Work has been picking up nicely for me lately. Because of my increasingly crazy schedule during the week with Erik's school and physical therapy on top of my sometimes unpredictable work load, I have been trying to accomplish more without finding regular care for him. As he ages, this seems to get slightly easier, although he has learned the phrases, "Mama, come here, please" and "Mama, watch this," so things can be a bit challenging at times. Especially since naps are slowly becoming a thing of the past. Luckily, my work hours are extremely flexible!

Erik and I have been frequently taking trips to the eye clinic to pick up the medical reports on tape that I sometimes transcribe in the afternoon. It's a challenge taking him with me, but I am learning some tricks to get him in and out of the building without too much trouble, and, as hard as it is, the process doesn't depress me as much as it used to. The days of lugging a floppy baby into the building are gone. I have learned to carry as little as possible and one day found myself wondering aloud if purchasing some sort of sheep dog to herd my child in the direction we need to go in a timely matter would be out of the question. Erik and I are both out and about in the world a lot these days, and although the going is very slow and sometimes very frustrating at times with his awkward, distracted tripping/falling and need to formally greet each and every single-celled organism that flutters by, I do admit that I enjoy the heck out of it. No, it's not easy looking professional exchanging medical documents with clinical staff while my child is loudly proclaiming his love of monster trucks, but, for the most part, he seems to brighten every room we enter and leaves a wake of genuinely surprised smiles. As Erik ages, his differences are becoming very obvious to the outside world, and the most notable response has been an increase in the number of people in his fan club.

One gorgeous fall day not long ago, Erik and I were pulling into the medical center parking lot, and I heard him emit one of his breathy, high-pitched gasps. The kind that make me whirl around to see if he has something becoming lodged in his throat. I turned my head as our Jeep rolled into our parking spot and saw what he was admiring not far from us. I blinked and scanned the immediate area before glancing into the back seat to confirm he was looking the same direction. And he was. What he was reacting to sat there. It was a glorious tribute to the 1970s.

It was a Ford Torino station wagon, much like this one:

Not the bitchin' GRAN Torino, like Starsky and Hutch had, but a giant, green station wagon. I have never seen my son react to any vehicle other than ones adorned with lights and sirens in this manner before. He began to chant, "Go look at it! Go look at it!" Slightly confused, I gathered my things, and we made our way towards it.

It was even more massive than it looked from across the parking lot. It was a real boat. I firmly believe that a car like this should automatically play its own theme song. It dwarfed the sleek, fuel-efficient four-wheel drive models that filled the rest of the parking lot, and it wasn't about to begin to apologize for doing so. The metallic pea-colored paint was oxidizing to an almost lovely opalescent sheen of decay before our eyes, and a piece of the metal trim had separated itself from the body of the car like an errant whisker. Unable to control my curiosity, I peeked inside the cavernous interior and instantly remembered the time my little brother and I rode down the Southern California freeways years ago sprawled in the back of my great-uncle's Country Squire station wagon on the way to Disneyland. Air bags were unheard of back then. If you had an accident, you were very efficiently ejected through massive windshields. In fact, I still have a puffy scar on my knee from cutting it open on the underside of a dashboard as I opened a door to get out of a vehicle manufactured in the 1970s. You can't cut yourself on a car these days if you tried. This particular station wagon looked as if it required a tetanus shot to ride in, and I felt wistfully nostalgic. This car was missing the charm of the faux wood paneling I remembered, but it had drawn Erik into its glory, anyway. I looked down and saw him bending at the waist to carefully inspect the tires, which were mounted on wheels painted the same shade of pea green.

My boy was in love.

He threw an absolute hissy fit when I told him it was time for us to head inside to pick up work, but by the time he saw the women behind the desk in one of the offices, he was happily announcing his passionate feelings for the ominous slab of Detroit steel sitting outside waiting for its owner.


I sheepishly giggled and explained what we had seen in the parking lot. The girl at the front window turned scarlet and muttered that it belonged to a friend of hers but that she drives it to work sometimes.

This week I noted she has driven it almost every day and parks it right in front to greet us as we pull into the lot. I leave the house five minutes early these days in case it is there. Each and every time we spot it, I gather my things and walk towards it to pay it a visit with my boy.

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Monday, October 13, 2008

Big Annoucement

I just removed the last of the plastic toilet lid locks from the upstairs commode. This means the end of our elderly relatives trapped in our bathrooms, pants pooled around their ankles, crying for help, and the awkward queries from desperate guests at parties. Erik finally seems to have ceased his obsession with self-inflicted swirlies.

As long as Erik continues to stim/spin, however, the toilet paper rolls will remain under spring loaded guards for likely the next decade. And I'm okay with that. Because, by now, I'm used to screaming "Lift the tab!" through closed doors. Beyond that, you're on your own around here.

This is a momentous occasion, indeed.

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Partied Out

(Erik and Sophie)

Erik had a great Sunday. Over the course of the day, we had six children come to visit. Sophie, one of his friends who also has WS, came to visit, as they were vacationing here in town. Erik played with Sophie and her little sister Ava and seemed to have a great time. Ace, the family's new baby boy, caused him to stop in his tracks briefly from time to time as he waited for the frightening infant noises that never came, but he seemed to enjoy his company, anyway. Erik even doled out (manly and casual) kisses when the kids left.

I put a stock pot full of beef stew in the oven in the afternoon and baked a berry cobbler. Friends of ours came to celebrate Brian's 40th birthday, and the house was once again full of children. Brian and I both agreed that Erik has turned the corner as far as playing with children goes. As I have said before, the most disabling facet of WS has been Erik's sensitive hearing. It isolated us from the world to various degrees for years now. While it is still an issue we struggle with, we are now able to enjoy the company of other adults for the first time while Erik plays independently with his friends. I noticed this happened a couple of weeks ago at Kathy's, when Erik stayed in the play room with Dominick for quite some time and I was able to enjoy a glass of wine without a child hanging from my neck. Truthfully, over the past four years, Erik has been less like a child and more like some sort of a fashion accessory I have worn to social gatherings. Without my lanky boy draped over me, I almost didn't know what to do with myself. I imagine this is a combination of Erik's friends maturing and becoming less unpredictable as far as noise and crying goes and Erik adapting to the noise of the outside world. Watching him adapt to compensate for and even overcome portions of his disability, sometimes so efficiently that it is difficult to remember particular struggles, is a beautiful thing to witness. He is amazing. I am also comforted by the fact that he has a high-quality group of friends who will grow up with him. Just like his parents grew up with me over the years.

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Sunday, October 12, 2008


I think there are spider webs in my head.

If you crawl underneath our house on the dusty high desert, you will find yourself covered in a mesh as fine as silk. As you propel yourself through it, there is a sound like the whisper of rupturing bath bubbles. This sticky material is left behind by the black widow. The female is a vicious-appearing, glossy arachnid with a red hourglass on her black abdomen. While most spiders build beautiful, symmetrical webs, the web of the black widow is a haphazard, tangled, irregular mess. I'm sure there are thousands of these spiders under my feet, although they stay hidden in the shadows and rarely make an appearance. They are venomous and can make a person very ill, so I never reach blindly into the dark coils of a garden hose or leave my shoes outside for long.

These days I wake up feeling strange. My brain is working, yet I can't seem to make it do what I want it to, like organize my schedule or steer my body in the direction I desire to go like I used to do. I often forget things.

This is not entirely new.

I have felt this way for a couple of months now. I'm distracted and irritable. There seems to be a sticky, thickening web inside my skull, and the familiar fear of blindly feeling for something in a dark space prevents me from reaching inside to discover just what is there to keep me in this suspended state of being.

Maybe I don't want to know.

Things are generally going well. I have nothing to complain about. Erik is healthy. I take him to therapies and school. While he still weakly protests going to these places, I know he enjoys them once he arrives. I follow the examples set around me when being an excellent mother doesn't seem to come naturally and hope I meet the standards I desire to achieve. Although Erik is challenging enough to create an exhaustion that sinks into my core, I know that he is a generally happy boy, and I feel satisified with that.

Am I happy?

I'm honestly not sure. At the moment, that is simply not a priority. I worry that this is the numbness people experience before they begin insisting on having breakfast in their wedding dress every day, knitting sweaters for various household appliances, urinating in the office coffee pot, or covering themselves in paper mache for no good reason at all. You know. The one thing that triggers a phone call to the authorities by a concerned neighbor or relative. Maybe I would do these things if I had more energy.

But I don't.

Last week I was overtaken by a migraine that just wouldn't die. I am beginning to develop a familiar, painless aura before a headache hits me full force. This is new. Sometimes the aura lasts for a couple of days. I sit staring into space and find it hard to bring the thoughts I want to the surface. I have trouble concentrating. People around me eventually begin to ask me if I am okay. Words seem to slowly drip from me when I feel talkative. I feel like I have just taken the world's biggest bong hit.

Before my support group meeting last week, the pain hit me full force. I felt a need to attend group, however, and ignored the agonizing ache that concentrated itself to pulse inside my left eyeball, practically blinding me. I bundled myself up and got into my Jeep against my better judgment, pulling into a parking spot a block away on a street in my old neighborhood lined with deciduous trees and ancient homes with welcoming, boxy porches collecting bright leaves. I walked through the gloomy chill to the remodeled corner store/deli. The heat inside emanating from the pizza ovens seemed to suck the oxygen from my lungs but began to bake the pain out of my head. I found the last vacant table and waited for the rest of the group, trying not to look as desperate as I felt. I was not alone for long. There were soon four of us.

We emptied ourselves of what was inside of us, although a lot of what ails me stuck in the widening trap built by the silent parasite inside, unwilling to be exposed to the cheerful lighting inside the building. I found myself chattering too much about nothing but found absorbing the words that were used to sketch the struggles around me comforting. Cars made their way down the narrow street outside the plate glass window, and the cones of the light spilling out from their headlights revealed giant, wet snowflakes wildly spinning to the pavement. One woman in our group inhaled sharply in surprise, and when we turned to see the wintry spectacle, we let out a collective groan. A delicious dessert of some kind topped with a merrily blazing candle was brought to a large table in the corner and set in front of a sour-looking gentleman surrounded by a group of middle-aged friends. He muttered a string of words, one of which was an obscenity. We went back to the strange business of being a support group.

Over the course of the evening, my head miraculously ceased throbbing in the presence of the other women warriors. As we left the building, the night air was filled with the sterile, indescribable scent of snow, and I felt even better taking it into my lungs. I was once again a bad ass warrior, ready to take on the world. I thanked my new friends and wished I had more words to tell them what it was that they had given me to carry home inside of me. I made my way home through the snow.

In the morning, though, the web was again present, this time conducting bolts of sickening physical pain in my skull and gumming up my synapses with dirty, spider-generated gobs of silk, rendering me slow once more.

Yeah, I think there are spiderwebs in my head.

But I'm not ready to reach into the darkness to find out.

Not yet.

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Saturday, October 11, 2008


Sunday, October 05, 2008

Emergency Celebration

Erik turns 4 on Tuesday, but we celebrated his birthday yesterday. I have thoroughly enjoyed being able to count down the days with Erik, as he truly understands what birthdays are this year and was excited about who was coming to visit. The theme for this year's party was emergency vehicles. We had a full house, even though some of Erik's biggest fans were unable to attend. I find myself daring to invite more children with each passing year, as Erik handles the extra activity and noise with more and more grace. He did beautifully, and many people commented on how much he has matured. I certainly felt as if everyone here was celebrating all of our hard work over the last year with us. I was incredibly excited to see Bev, the woman who worked with Erik in our home those dark first months, at our door. She misses Erik immensely now that he has moved on to preschool and was able to stay for most of the party. The cake was yet another incredible confection sculpted with love by my parents. It was shaped like a bright red ambulance, complete with working lights and siren. Erik was absolutely thrilled. It soon became mildly dimpled with fingerprints from Erik and the other partygoers of shorter stature who admired it on their way by.

One of my friends from my old job at the clinic offered to arrange for an ambulance to come to the house. I received a text message providing a heads up that they were blocks away, and I quickly told everyone inside to gather on the front porch. There is nothing quite like a group of adults holding wine glasses cheering on an approaching ambulance. We giggled and hoorayed with gusto as it approached with its spasmodic lights piercing the slightly gloomy afternoon. The neighbors probably thought that one of my wild parties had finally claimed a life. The kids were amazed and ran without hesitation to greet my friend and the slightly bashful EMT driving. The back doors were opened wide, and Erik was coaxed inside. Erik stood next to the stretcher and said, "Look at YOU on that ambulance!" He cautiously inspected everything, including the vehicle's undercarriage, by the time we headed back inside to feast on pizza. It was a very surreal and oddly festive sight to behold.

We then sliced into the cake. The candles were no match for Erik's lung power. He unwrapped presents for the first time, encouraged and guided a little by Brian this year. It was good to see him actually tearing wrapping paper and being interested in what was inside the boxes, not just the boxes themselves. He enjoyed the kids and adults around him and understood that it was his day. Towards the end of the party he played with the other children in his bedroom, although they mostly played around him and asked him to join them in their very imaginative games. Erik said goodbye as each of them left, and the sweet, strange formality of his words made us smile.

I was a little emotional today. After some of the stress that comes with planning an event like this finally lifted and all was said and done, I realized we had been given the best gift of all: A rare day of feeling almost completely NORMAL.


(Videos and slide show coming soon)

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Thursday, October 02, 2008


Thankfully, I no longer feel like WS is a wall that separates me from Erik. The distinct, autism-like traits he had have gradually fallen away, although some still remain, subtle and strange. He seems to really hear me now, at least most of the time, and seems to understand most of what I say. He even thinks I am somewhat funny at times. Instead of mostly parroting back my words, he responds appropriately, and we are beginning to have real conversations, which I enjoy immensely. He loves new words and phrases, and he tries them out before committing them to memory for future use. His language is organized and meaningful.

Having said that, though, simple tasks continue to be incredibly difficult. Erik was a completely passive boy when he entered early intervention. Not long ago, he would stand there, drool stringing off his chin, and patiently allow us all to care for him and gently guide his body through the motions of daily life. When things got to be overwhelming for him, he would just slump over and tune out.

Things have improved a lot. However, I am now encountering a frustrating mixture of extremely poor motor skills, some remaining lack of understanding, and the normal pediatric rebellion that comes with being almost 4 years old. While I still get a lot of reassurance from the people around me gently indicating Erik's behavior is perfectly normal for a 4-year-old, I wonder if they truly understand that it is still necessary to hover over Erik to get him to perform even simple tasks. I am beginning to notice that they don't seem to have to with their children. At this time, Erik cannot even consistently complete two-step instructions. He will sporadically do one-step instructions when asked now. I can physically steer him where I want him to go to accomplish something that needs to be done, like brushing his teeth or taking a bath, but he rarely will volunteer to follow instructions to accomplish daily tasks without becoming furious at me and throwing a sometimes violent fit. I am kicked and slapped many times a day. He is too heavy to carry like I used to, although I now find myself doing it anyway when we are short on time and he is raging or just sitting on the floor being happily defiant. Most of the time it does me no good to repeat myself over and over. Consequences for behavior seem to only make things worse and are now sparking some obsessive rumination, and I have resorted to simply shutting him in his room when he tries to destroy things until he is able to calm himself down. This usually doesn't take terribly long. I just don't have the time or the energy to beat a dead horse.

Do they understand that Erik doesn't understand the simple concept of rubbing his hands together to wash them, no matter how hard I try to explain how or demonstrate it for him? Do they understand what it's like to have a child who still doesn't seem to grasp the concept of holding a freaking crayon? Do they understand how tired I am after changing nearly four years of diapers? Do they see the pain in my eyes when I see tiny children moving so easily without falling and performing tasks that I am still waiting for Erik to do someday? Do they know how ridiculously simple my dreams for the future are? Do they understand that some days feel as if I am trying to run uphill? Do they know how exhausting this is?

I don't think they do.

Maybe because it's because I normally try not to sound like I am complaining and just smile and nod back. Honestly, though, I just need to talk about how tired I am sometimes. I didn't realize there were nerves in a person's soul, but, as it turns out, it is possible to ache there.

The last couple of times I walked Erik to his classroom we have been intercepted by my former parent group moderator in the hall. Despite her having nothing to do with Erik or his program any longer, she seems to have made it her personal mission to accept Erik's hand in hers and walk him to his classroom before giving him instructions to show her his locker and hang his backpack and jacket on the little hooks inside. The trouble is, Erik, of course, wants no part of any of this, and she must force him to do it. This apparently requires talking to him like he doesn't have two brain cells to rub together. Her words almost have a Nurse Ratched quality to them. Horrified, I wonder if I sound anything like this to outsiders. I'm hoping it's just her. I still have a bad taste in my mouth after the day she labeled him "severe" during parent group. It is quite obvious to me that she still believes that is true. I know things are difficult, but I never believed Erik was actually severe. Maybe he is. Maybe I just can't see it. I don't know what's worse. People calling my kid a "retard" or treating him like the word sounds.

This whole procedure really rubs me the wrong way, but I am unable to find a socially acceptable, kind way to tell her to get the hell away from my child. Instead, I humor her, as Erik does not notice her tone and she seems to be trying to help, and I let her go through the maddening motions I would be required to in order to get him to perform these tasks. Erik inevitably can't seem to see the connection between the metal hook and the loop on the top of his backpack, drops his things, and walks away, distracted by the noise and the plastic bins full of toy cars and trucks. Unable to take his coat off by himself, she helps him off with it, and he drops it on the floor. Sometimes he still drools, indicating to my experienced eye that this whole production has now crossed the border into not-a-chance-in-hellsville. I stifle the giant scream that is assembling itself in my lungs and smile sweetly. She then instructs the adults around us that Erik is to do these things by himself, and we are to not distract him.

Yeah, right.

Today I was being kicked in the chest once again by my furious, ever growing boy as I tried to change a ruined diaper packed full of the rotten products from the combination of last night's first attempt at mac and cheese and his sensitive stomach, and I almost lost it. Everything began crashing down on me inside, and I had to finish quickly and walk away.

I guess I'm just tired of running uphill each and every day.

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