Floating in Space

Avoidance

2008-12-04T11:00:00.000-08:00

Because of the inherent struggles with communication, children with autism often rely on behavior to make their wants and needs known. In essence, behavior is communication. We autism parents become master detectives, constantly sifting through the clues our children give us. We analyze possible triggers for the behavior. We hypothesize the function of the behavior. And we respond accordingly to either reinforce the positive behavior or change the negative behavior.

When examining the function of the behavior, it is important to determine if the behavior is self-stimulatory in nature, if it is to gain access to a preferred task or object, if it is for attention, or if it is to escape/avoid a certain task or object. The majority of Kate's behaviors are related to her desire to escape or avoid situations that she finds aversive. Most aversive to Kate is pooping on the potty.

I will spare you the gory details of this ongoing struggle. It is downright ugly. In order to avoid sitting on the potty Kate will do one or more of the following, depending on her mood at that particular moment: throw a tantrum, cry, scream, throw herself on the ground, whine, argue, complain, kick, hit, line up her toys, or hide in her room. We ignore and/or redirect Kate when she exhibits the above behaviors and slather on the praise when she sits quietly on the toilet and goes about her business.

One recent night after a lengthy battle, Kate finally accepted her fate and sat on the toilet. She was exceptionally quiet. Too quiet. I gently knocked on the door. No answer. Was she even in there? I opened the door, which was fortunately unlocked. Perched on toilet, slightly askew, sat a sleeping Kate. That's right. Sleeping. On the toilet.

My daughter, master avoider of pooping.

Babies and Magic Markers- Part 2

2008-11-17T06:40:00.000-08:00

Apparently I did not learn my lesson the first time.

Ghosts

2008-11-14T23:30:00.000-08:00

I see them everywhere. Forever etched into my mind as adolescents, it is a bit of a shock when I see them in their adult form. Full-fledged grown-ups, just like me.

The woman behind me in line at the grocery store, an old friend from middle school. The friendship ended badly, over something petty that I no longer remember. We both avert our eyes, not wanting to call attention to the painful details of our shared past.

The gas station attendant who fixed my car, a boy mercilessly bullied throughout his teenage years. A speech impediment continues to plague him. I wonder if memories of being on the receiving end of countless wedgies in the boys' bathroom continue to haunt him. I thank him for his help and quickly leave.

The woman manning a craft table at our hometown fall festival, former arch rival from elementary school. I turn the other way and all but sprint in the opposite direction. A nasty child surely grown into a nasty adult, someone I do not care to associate with.

I see them everywhere. And I know they see me too. Yet, we say nothing. Maybe someday we will outgrow those old hurts and find the courage to start anew.

Realization

2008-11-12T19:00:00.000-08:00

It is not going away. The autism, that is. No matter how much progress she has made, or continues to make. No matter how much the expressive language gap is narrowed, or how reciprocal the conversations may be. It will always be there. The obsessions, the rituals. The rigidity, the inflexible thinking, the poor frustration tolerance, the emotional reactivity, the perseveration. These things will continue to impact her relationships with peers, people in the community, our family.

I have spent the last year of my life telling myself that if we give her an extra year in preschool she will be caught up. The issues will be resolved, the gaps filled in. I foolishly let myself believe the autism would simply disappear.

Let me be clear about something. I fully accept who my daughter is, autism and all. I respect her neurological differences and am so proud of how she has overcome the many challenges she has already faced in her young life. I love her silly sense of humor and the unique way she views the world. It is just so hard to see her struggle, to push people away, especially those who love her the most.

A New Course

2008-11-04T10:54:00.000-08:00

The 10K race was held at a local park, the scenic course winding its way around the lake like a ribbon. Back in the early days of autism this park, for me, was both a blessing and a curse. Situated halfway between my house and a friend's, the park was the perfect meeting place for an impromptu play date. Our late afternoon get-togethers served as a respite, time out of the house, away from the endless parade of therapists. Connecting with my friend punctuated those dark days with the tiniest speck of light. As much as I treasured our time together, those play dates stung. Watching my friend's children and Annie laugh and play with one another painfully highlighted Kate's deficits, leaving me defeated, without hope.

The first half of the race was a trip down memory lane of sorts, each landmark awakening a scene from a lifetime ago. The playground where Kate spun in endless circles, alone. The swing set where she threw herself to the ground, enraged that Annie occupied the swing on the right side instead of the left. The path where she bolted away from us, screaming at the top of her lungs. The spot at the edge of the lake where we threw rocks, Kate wading in the frigid water, oblivious. And finally, the bridge Kate attempted to scale only to be pulled to safety in the nick of time.

As I crossed the bridge I picked up my pace, leaving those memories behind. I rounded the bend into an area of the park I had never seen before. My legs burned as I made my way through this uncharted territory. With no memories attached to this path, I couldn't help but feel that we are on a new course, an opportunity for new memories, for new beginnings.

The Banker

2008-10-02T08:08:00.000-07:00

Words like financial crisis, bailout, money, billions, trillions, and dollars flow throughout our house these days, the drone of the TV an undercurrent. An empty piggy bank lay on Annie's floor. Its contents, a crumpled dollar bill and an assortment of coins, sit on her nightstand. The mention of a quick trip to the convenience store for milk causes her to spring into action. "Don't worry, Dad," she reassures. "If you need some money you can use mine."

My sweet, generous little girl.

A Fabulous Day

2008-09-06T16:39:00.000-07:00

The beginning of September marked a major milestone in Kate's educational career: the beginning of kindergarten. All summer long I harbored a great deal of anxiety over this transition. She would be leaving the safe haven that was preschool, the magical place that transformed her from a screaming, dysregulated toddler into the delightful child she is today. It was the place where everyone knew her, students and teachers alike. It was the place she loved.

So it was with great trepidation that I put her on the bus that first day and bid her farewell. For the 2 1/2 hours that she was gone I paced back and forth, waiting for the phone to ring telling me I needed to pick her up immediately. Surely she would be overwhelmed by the bus ride and the large building and the new teacher and the 19 new classmates. I was confident this kindergarten thing was a recipe for disaster.

So it was with great surprise at dismissal time that I was greeted by a smiling Kate coupled with an enthusiastic thumbs up from the teacher. "A fabulous day!" the teacher gushed. No time for elaboration, Kate was quickly deposited into the car and off we drove, leaving a million unanswered questions swirling around my head. A fabulous day? What did she mean? A fabulous day for a kid with issues? Or a fabulous day just like any kid might have? A fabulous day as in she didn't throw herself on the ground and scream? Or a fabulous day as in she talked to the other kids and played with them? A fabulous day as in she blended in with the rest of the class, the autism indiscernible?

I looked in the rear view mirror to gauge Kate's reaction to all of the newness. It was the smile that silenced all of my questions. She is happy and that is all that matters. A fabulous day indeed.

Where Babies Come From

2008-08-22T07:00:00.000-07:00

Annie: Hey, Dad. Do you remember when you comed to the hospital and picked me out?

Dad: eyes twinkling with amusement I sure do.

Annie: very serious Yeah and you picked me instead of the other babies because I was the best one there and you liked me the best.

Dad: That's right, honey.

As you can see we have yet to have THE TALK. I wonder how much longer we can get away with her version of the facts of life.

Wiipulsive

2008-08-21T09:38:00.000-07:00

The young twentysomething strode confidently through the crowd, a single word emblazoned across her chest.

Wiitarded

An obvious play on the R-word.

An internet search revealed the following:

Found on this site: "This funny t-shirt is meant to be worn with humor in mind. We all know that video gamer who just needs to express their inner self. Enjoy the lighter side of life just a little bit more in style and comfort."

And here: "Do you play with your wii all day? Wii do too! That's why we're wiitarded! Get this shirt today. Made of 100% cotton this tee will stand up to the most rigorous sitting down. Own this t-shirt and show everyone that you really are wiitarded."

And still another: "We are Wii-Tarded. That means we love our wiis to the point of being crazy. Let the gamer in you out and be wiitarded. This humorous spoof on the Nintendo wii will have the humor flowing at your next wii-kend party."

I don't know about you, but I fail to see the humor.

Gypsies

2008-08-16T13:57:00.000-07:00

Summer is our season. Combine a husband's flexible work schedule with a serious case of wanderlust and the result is endless summer fun all while living out of suitcases. Our travels took us to the beach with my husband's family, to Disney World to visit a dear friend, then to another beach with my family.

Traveling with 3 young children is a challenge. Add autism, a whining preschooler who insists she lost the ability to walk, and a newly-minted toddler whose sole purpose in life is to destroy everything in his path to the mix and it is downright exhausting. My husband and I often joke that we don't go on vacation but merely pack up the contents of our house and live somewhere else for a few weeks. Exhausting, yes. But totally worth it.

Old memories were relived, new memories made. Kate splashing in the ocean, riding the waves on her little boogie board like a pro, jumping into the pool and swimming under the water. Annie laughing with her cousins, singing songs from High School Musical at the top of her lungs, riding a roller coaster for the first time. Little Fella playing in the sand, taking his first steps, eyes wide while taking in the sights and sounds of Disney World. These are the things that I will remember.

Now all I need to do is lose the 5 pounds I gained from pigging out, give my liver time to repair from the alcohol consumption, catch up on some sleep, and dig myself out from under mountains of laundry. Then I think I will need a vacation.

The Inexplicable

2008-07-26T18:30:00.000-07:00

Each morning we walk past the row of stately sycamores, their trunks adorned with yellow ribbons. And each morning she turns to me and asks me the same question in her squeaky little voice, Mommy, why are there yellow ribbons on those trees?

My answer is always simple, always the same. They are for the men and women in the military, I tell her. They are for our troops who are fighting in a war very far from home. It means that we are thinking about them and praying they are safe.

And each time she utters, Oh, feigning understanding, but the question still lingers in her eyes. She clearly does not, nor will not, understand my explanation, no matter how simple. Words such as military, troops, and war are just not in her 4 year-old vocabulary.

This week we learned of the tragic loss of Vicki's son, Evan, who touched many lives. And although as adults we have the words in our vocabulary, the loss of a child is beyond comprehension. My thoughts and prayers go out to Vicki and her family. I wish peace and comfort to all.

Information about services for Evan can be found here.

A New Goal

2008-06-25T06:54:00.000-07:00

Running has been going fabulously well. So well, in fact, that it's become somewhat of an addiction. I just can't stop. Over the course of April and May I ran 4 5K races and improved my time by nearly 5 minutes from the first race to the most recent. And I am hungry to shave off even more time.

Now that I completed my goal of running a 5K, it is time to tackle something bigger. A 10K. It's not that the 3.1 miles have become too easy. It's just that I need to set a new goal, to move forward, to challenge myself, to continue growing.

Tonight's Plans

2008-06-19T14:59:00.000-07:00

To celebrate our first night of summer vacation we will be, in Annie's words, s'moring. What is s'moring, you ask?

The Dictionary of Preschool Language Quirks defines s'moring as "cooking marshmallows on the fire and get it on the stick then you hold it with 2 hands then you put it on a chocolate graham cracker sandwich".

After s'moring this evening I shall engage in beering.

beering- v. relaxing by the fire, sipping a cold beer, celebrating the start of summer

Wishing you all a wonderful summer!

Endings and Beginnings

2008-06-13T18:01:00.000-07:00

Three years ago I dropped Kate off kicking and screaming for her first day of preschool, anxiety clearly evident. Her delayed echolalia, a mantra, "You are a brave girl. It's okay to cry." Over and over.

Today marked Kate's last day of preschool. She bounced into the classroom and announced, "I'm here! I have presents for all of my teachers!" We handed out the gifts, exchanged hugs and tears, reminisced about those early days, and marveled at the progress she has made.

"I kept hoping this day would never come," I confessed to the owner of the preschool. "I don't want to say goodbye. I wish Kate could stay here forever."

"No," she gently corrected me. "This is the day you have been waiting for. Look how far she's come. Typical kindergarten next year. She is ready. She will be more than fine."

An ending. A beginning.

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The phone rang late yesterday afternoon. My brother. "Grandmom's not looking good," he told me. "You might want to get over there."

"I will go tomorrow," I promised. How many times had I uttered those words and not followed through? I always had an excuse for not going to visit her in the assisted living facility she now called home. The kids were sick...we had plans...there was a school event...I was just too busy.

My grandmother was a woman of few words. As a child I often did not know what to say to her. Our conversations were always brief. Awkward. In her later years our conversations focused on my career. She would ask me if I liked teaching. I would respond in the affirmative and say that it was fun but a lot of hard work. We would then have the same conversation a few minutes later.

The curtains were drawn, darkening her room. The drone of her roommate's TV, the hiss of the oxygen, the hum of the air conditioning threatened to drown out my voice as I greeted my grandmother. I wish I could say that she didn't respond because she didn't hear me, however that was not the case. Hospice had been called in the day before for the sole purpose of keeping her comfortable in her final days. She was much smaller than I remember her. Frail. Propped up on pillows, the bed seemed to swallow her.

My brother and I took our places at her side. He did the talking. I just sat in silence, old memories swirling around my head, regret planted firmly in my heart.

We sat this way for close to a half hour, until he needed to leave. I knew I needed to stay, to speak what was on my mind. Silent no more, I knew what I needed to say.

I told her I was sorry. I was sorry that I didn't visit her. That I didn't bring my kids to come see her. That this was a nice place, and we should have been there for her. I told her I was sorry I didn't talk to her more. That I didn't know her like the people at the home knew her. That I didn't take the time. That I was sorry.

I sat and watched her. She moved not a muscle, except for the rapid rise and fall of her chest. An infomercial squawked from the roommate's TV. Residents passed by the door. Some hobbled, others glided by in wheelchairs. A single picture stood on her nightstand. She and I on my wedding day.

I sat. Glued to the chair. Unable to move. An overwhelming desire to read the bible flooded me. My search through the nightstand drawers yielded nothing as my grandmother was not a religious woman. Not one to quote scripture, I recited the only verse I know.

"God so loved the world he gave his only Son so that whoever believes in him shall not perish but have eternal life." John 3:16

Those were the last words I spoke to my grandmother. Moments later her breathing slowed, became deeper. A deep breath in. Pause. Exhale. I glanced around the room, wondering if my grandfather was here, waiting for her. Did he recognize me? Did he know I have 3 kids now? That I'm all grown up? I thought about the music store they owned and about Sunday dinners at their house. Always roast beef, always good.

I sat there until her chest rose and fell one final time.

Inside my heart, joy.

An ending. A beginning.

A Never-Ending Expense

2008-06-01T18:44:00.000-07:00

There should be a sign at the dance studio that reads "Please surrender limbs for payment" because this little hobby is costing me an arm and a leg. Make that an arm and a leg times two. When I signed the girls up for dance lessons it was with the false misunderstanding that the only money I would be forking out would be for the monthly tuition.

Wrong.

If you want your child, make that children, to participate in the recital at the end of the year, you must fork out the recital fee that is not included in the aforementioned monthly tuition. Said recital fee covers the cost of costumes, rental of the facility, and liability insurance, just in case we crazy dance mothers go wild and trash the auditorium. The following items are not included in the recital fee: tights, tickets for we crazy dance mothers and fathers and every single relative in the family over the age of 3, trophies, Olympic-style dance medals, recital t-shirts, professional portraits, and video of the performance. Oh, and you can have your child's hair professionally styled at a local salon, too. We opted out of that one.

Excessive? A bit.

Someone once described the roller coaster of parenthood as the highest highs and the lowest lows. Today, watching my girls dance on stage, was one of those highs. Seeing smiling Kate wave to the audience when the curtain opened, dancing in sync with her classmates, Annie executing multiple ballerina twirls without toppling over, putting her heart and soul into her routine. These are the moments that make my heart sing.

Worth it? Every. single. penny.

Wordless Wednesday: Magic Markers and Babies- Not a Good Combination

2008-05-07T03:50:00.000-07:00

A Meme to Get Me Out of My Blogging Funk

2008-04-30T20:04:00.000-07:00

Niksmom so kindly tagged me for this meme, thus bringing to end my 7 week blog silence.

5 things found in your bag

1. A laminated card of Jesus- I was strolling through town one day about 8 years ago when I stumbled upon Jesus. He stared at me unwaveringly from a laminated card that had been propped up against the curb, as if waiting for me. I stared back, pondering my next move. I quickly glanced around and picked up the card. On the back, a quote: "Lord, Help me to remember that nothing is going to happen to me today that You and I together can't handle." The card has been with me everyday since I found it.

2. Epi-Pen for Annie's mild walnut allergy, just in case.

3. 2 mismatched socks, courtesy of Little Fella's fondness for removing his socks and tossing them wherever he sees fit.

4. My calendar/planner that I would be lost without.

5. Crumbs.

5 favorite things in your room
(Right now I am in my family room.)

1. My new couch- Back in November we special-ordered a couch. What should have taken a maximum of 6 weeks ended up taking 11 weeks. Very long story short, our long awaited couch arrived covered in a hideous brown and green paisley material that no sane person would ever order. I refused the couch, had my money refunded, went to a different salesperson, and bought a different couch. 3 days later it was delivered, and it is fabulous.

2. My new laptop- My darling husband decided if I was going to spend so much time on the computer it might be a good idea to purchase a laptop so we could at least sit next to each other on said couch. So we sit here, side by side. He reads the paper, I read blogs.

3. My fireplace- The one thing we did not like about our house when we bought it was that it did not have a fireplace. We had a gas fireplace installed shortly after we moved in. My husband and my father-in-law built the mantle that surrounds the fireplace themselves.

4. Pictures I took of the girls at the beach.

5. A picture of Gonzo and I walking through the Virgin River on our cross-country trip 10 years ago.

5 things you have always wanted to do

1. Run a 5K.

2. Go to Hawaii.

3. Own a beach house.

4. Get organized.

5. Figure out what I want to be when I grow up.

5 things you are currently into

1. Running.

2. Reading blogs.

3. Lost.

4. Driving all over creation for playdates, dance class, school, etc.

5. Going out on dates with my husband.

5 people you'd like to tag

Amy, Lori, Kristen, Maddy, Tulipmom

Wordless Wednesday- Autism and Play Skills

2008-04-30T04:40:00.001-07:00

Coming Home

2008-03-12T08:22:00.001-07:00

Last night marked my return to the running world. Butterflies danced around my stomach with the thought of running again after a near 3 year hiatus. Any thoughts of self-doubt quickly dissapated the moment I laced up my too-new-looking shoes. Slipping into those shoes was like being enveloped in the familiar embrace of an old friend.

The class consisted of a diverse bunch ranging from non-runners to those who had a marathon or two under their belt. Most of us, though, were runners who, for various reasons, had fallen out of touch with running. The class was an opportunity to become reacquainted with the sport, a promise of new beginnings. Once a runner, always a runner.

My feet hit the pavement, surprisingly quick and light. I found my pace, lulled into a zone by the rhythmic cadence of my steps and breathing. 2 breaths in, 2 breaths out.

I can. Do this.
I can. Do this.
I can. Do this.

It was, in a word, exhilarating. Like coming home. And for the first time in my life, I felt like I was not running away from the demons that were chasing me, desperately trying to escape. For the first time in my life, I felt like I was running toward something.

The Things I See

2008-03-04T12:51:00.000-08:00

She bursts into the dance studio and sings at the top of her lungs, "Hi, Miss Teresa!" She only hears Miss Teresa's words, "Hi, Kate. Put your bag down and get in line." What she doesn't hear is the less-than-enthused tone of the reply, the annoyance in her voice.

But I do.

She needs to be reminded several times to pay attention, follow directions, stay with the group. She doesn't see the exasperated look on the teacher's face.

But I do.

She shows a coveted toy to the group during sharing time. Her words come out disjointed, fragmented. The teacher feigns interest and asks her a question she does not know how to answer. She doesn't see the look of disdain on the teacher's face.

But I do.

She patiently waits her turn to try a new step across the floor. She does it wrong, the entire way. She doesn't notice that the teacher doesn't bother to help her.

But I do.

She is the last one to emerge from the room, no doubt because the contents of her bag must be arranged in a particular order. She doesn't see the impatience in the teacher's hurried movements as she quickly brushes past her.

But I do.

And I wish I didn't.

Quarantine

2008-02-29T15:26:00.000-08:00

You do not want to come within a 5-mile radius of my house. It's not pretty, folks. Right now my best friend is a bottle of Lysol that I have obsessively sprayed on virtually every surface in this place in hopes that the vapors will kill off any stray viruses that might have seeped into my body after being vomited on 4 times between 3 children. It's only a matter of time before one of us big people joins the others. Wish us luck.

Snow Day

2008-02-22T14:48:00.000-08:00

I watch her from my position in the front door. She is a pile of pink punctuating the white blanket covering the ground. She lay motionless, on her back, eyes turned toward the heavens, arms and legs splayed from her body in neat 45 degree angles. She maintains her position for a minute or so before standing up to inspect her handiwork. Pleased with her creation, she dances several steps to the side and flops down again. This routine continues, unchanged. Eventually she spies me, waves, and calls out, "I makedid 25 snow angels!" Sure enough, 25 small body prints lined the yard, side-by-side. 25 snow angels created by my little angel.

A Goal

2008-02-17T15:30:00.000-08:00

I have been out of sorts lately, adrift. My days are filled with the rather mundane tasks of motherhood. Shuttling the kids to and from school, endless piles of laundry and dishes, cooking, wiping up crumbs, picking up toys, sitting in the waiting room at the dance studio. I am bored. I am restless. I pick up a book or a magazine, only to put it down again. I tackle a project around the house, only to stop in the middle, leaving it incomplete. Unfinished. I am treading water, going nowhere. Each day I am simply marking time, just trying to make it through the day without drowning.

This is no way to live a full, rich life. I need goals, things to accomplish. On my calendar is the date May 24th circled in red. It is the date I will run my first 5K. It is a goal, something that I will inch closer and closer to one baby step at a time. We all need goals. Something to set our sight on. Something to keep us moving. Something to give us strength.

The Wandering of the Three Year Old Mind

2008-02-06T17:13:00.000-08:00

Annie: Hey, Dad. I'm a smart cookie.

Gonzo: Yes, you are.

Annie: Hey, Dad. I like cookies.

Gonzo: Me too.

Annie: I don't like chocolate chip cookies though.

Gonzo: Oh, I do.

Annie: I like chocolate though. I like Hershey kisses.

Gonzo: So do I.

Annie: Hey, Dad. Maybe we could go to Hershey Park again.

She pops her thumb into her mouth and turns her eyes expectantly toward Gonzo, awaiting his answer.

Gonzo: Maybe we will go this summer.

Annie: Okay!

And with that she happily gallops off toward bed.

Watch Your Mouth

2008-02-03T07:35:00.000-08:00

Thoroughly frustrated with our ongoing bathroom struggles I vented to Gonzo, "I am so tired of wiping that five year old A-S-S!"

From the next room comes a tiny monotone voice, "Five year old A-S-S. Five year old A-S-S. Five year old A-S-S."

Moral of the story: Be careful what you say, or spell, in the presence of an echolalic child.

A Little Reminder

2008-01-29T10:55:00.000-08:00

The plume of thick, dark smoke rising on the horizon matched my mood that morning. Dark. It had been yet another rough start to the day. Little Fella screamed from his high chair while scattering Cherrios onto the already crumb-laden kitchen floor. Crunch. Annie incessantly whined that she was still hungry. Her requests for fruit snacks, gum, peanut butter on a plate, crackers, goldfish, a popsicle were met with an increasingly louder, "I said no." Amidst the cacophony Kate stole into the playroom to engage in repetitive play with her "kids", a random assortment of 22 small dolls that must be lined up and put away according to her own stringent standards. Any deviation from her particular routine is not allowed and will result in a full-blown tantrum.

We were running late that morning, and I quickly morphed into the wild-eyed, crazed Mean Mommy. "Hurry up! Put those away! We're going to be late, " Mean Mommy barked.

"Put kids to bed first," she responded firmly.

"Just leave them! Why do you have to put them back? Let's go!" Mean Mommy ranted, not understanding her insatiable desire for these nonfunctional, quirky routines.

Giving her a few extra moments, I loaded the other 2 into the car. However, the routine was still not complete when I returned. Not having any more time to spare, Mean Mommy picked her up and carried her kicking and screaming to the car, kids strewn about on the floor.

It was an ugly car ride that morning. Kate, red-faced with tears streaming down her cheeks, screamed at the top of her lungs, drowning out Little Fella's cries. Annie alternated between whining and sucking her thumb. My insides shook, and I cursed under my breath.

Halfway through our 20 minute journey, the plume of smoke began to dissapate, and the screaming and crying subsided. As I rounded the bend in the winding rural road, traffic came to a screeching halt. Police cars, fire trucks, and an ambulance barricaded the road. A single vehicle wrapped itself around a tree, fully engulfed in flames. The driver, extricated from the car just moments before it was too late.

The accident required me to turn my car around and find a new, albeit longer, route to school. During the drive I had a little extra time to think. Had Kate not played with her toys, had we not argued, had we not been running late, we might very well have been involved in that accident. The little annoyances that, at the time, I thought were going to ruin my day, were nothing compared to what the driver of that car endured, were nothing compared to what could have happened to us. Life can change in the blink of an eye. Let us celebrate the many blessings in our lives, today and every single day. Let us not take these things for granted. Ever.

The Dawning of Self-Awareness

2008-01-19T08:33:00.000-08:00

The scowl and furrowed brows warned me that trouble was afoot. The question came in fragments, indicative of her continued struggle with language, "Why I.... why doos... why have... a Mr. Joe at my school?" I answered this question easily enough, that Mr. Joe helped her learn how to talk, how to use her words. Her reply was blunt. "No. Need. Help."

The next question came in quick succession, so quickly that it caught me off-guard. "Why Annie not have a Mr. Joe at her school?" I faltered, stumbled over my words. Everyone is different, I told her. Everyone is good at something but may need help with another thing. You are a good reader and know how to count to 100. You just need a little bit of help with using your words. Annie is a good dancer, but she needs a little bit of help walking up the stairs.

She remained silent in response to my imperfect explanation, and I did not press the issue further. When the time is right, she will bring up the subject again. And I hope that next time I will find the words to tell her that despite our differences, we are all the same. And that differences are okay. Same but different, different but same.

Wordless Wednesday

2008-01-16T11:49:00.001-08:00

What being couch-ridden for a whole week with a 103 degree fever and ear infection will do to your hair.

A Walk Toward Hope

2008-01-14T10:34:00.000-08:00

Below is something I wrote over a year ago. I had planned to submit it in hopes that it would be included in this book. I chickened out. So now I am sharing it with all of you.

I will never forget the first time I heard the word autism and Kate spoken together in the same sentence. Those life-altering words were a punch in the gut, changing nothing, everything. Gone were the frilly fantasies of a childhood filled with giggling little girlfriends staying up all night at a sleep-over. Gone were the dreams of an all-star athlete, award-winning scholar, and class president. Such hopes and dreams were replaced with an exhausting array of therapies and appointments, support group meetings, behavior modification that never seemed to work, and a small mountain of paperwork stamped with the word autism, as if sealing the fate of life ahead.

When Kate was a baby, she could light up a room. Her musical laugh announced her arrival as her twinkling blue eyes scanned the room, eager to explore the marvels of the world. She was a charming baby who could captivate anyone with those eyes and that sweet smile. Kate sparkled and exuded life.

Then came what we thought were the terrible two’s. Tantrums, screaming at people, throwing herself on the ground, rigid routines, quirky obsessions. By age two-and-a-half it appeared that Kate’s terrible two’s had lasted longer than expected, and we decided to seek help.

Around the time of the diagnosis, my husband’s sister asked if Kate would participate in her wedding as the flower girl. Although I knew that Kate bouncing down the aisle in a quiet church in front of a few hundred family members in a fluffy dress and new shoes was a recipe for disaster, I accepted the invitation as my way of trying to hold onto a tiny shred of a typical childhood.

Over the next few months, flower girl practice consumed me. Each Sunday we drove a half hour to attend Mass at the church where the wedding would take place. During church we fed Kate an endless supply of praise and goodies for sitting quietly. After Mass we practiced walking, not bouncing, down the aisle. We took pictures of the church and wrote a social story about being a flower girl. That story became a bedtime favorite. We paraded around our house in the fancy dress and stiff new shoes, laughing at the tappity-tap sound they made on the kitchen floor.

The day of the wedding arrived with my stomach churning in anticipation. Would all of our practice finally pay off, or was my sister-in-law’s perfect day going to be ruined? Part of me just wanted to grab Kate, poofy dress and all, throw her in the car and drive away from everything and everybody.

Moments before it was time to begin the processional Kate was sprawled out on the floor, a mound of white tulle and curls. Rolling a toy car across the floor, back and forth, she clearly did not wish to be disturbed. Each attempt to get her to stand up was met with an increasingly louder scream that showed her displeasure.

The processional began, and Kate showed no signs of any desire to participate. One by one the bridesmaids glided down the aisle. Panicking, I told the ring bearer to walk without the flower girl. It wasn’t going to work.

In one final attempt, I gently picked Kate up and whispered calmly in her ear, "Kate, do you want Mommy to carry you or do you want to walk?" My sweet little flower girl looked into my eyes and said in a slow and halting voice, "Walk with Mommy." As she raised her dimpled, chubby hand toward mine, she gave me a shy smile. I grinned from ear to ear, took her hand in mine, and we began our journey together.

As I floated down the aisle with my beautiful daughter I said two prayers to God. The first was a prayer of thanks for giving us that perfect moment. The second was a prayer of hope that some day, some day, my husband would be given the same gift of walking Kate down the aisle.

That magical afternoon we walked together. We walked toward hope and acceptance. We walked toward the future, together.

An Elvis Fan

2008-01-09T11:56:00.000-08:00

Earlier this week Kate's school celebrated Elvis Presley's birthday. The festivities included birthday cake, guitar-making, and of course, lots of music and dancing. According to her teacher, Kate had a grand time and thoroughly enjoyed herself.

The highlight of the party? In Kate's words, "My favorite song beed 'Love Me Teacher'."

A New Habit

2008-01-05T06:59:00.000-08:00

A new sound can be heard echoing through my house these days. This sound is usually produced by a large, beer-guzzling man, not by a sweet girl at the tender age of 5. Apparently, Kate picked up this gem of a habit from spending time with her soda-chugging tween-age cousins.

Kate thought this belching thing looked, and sounded, like loads of fun, so she decided to give it a whirl. She pounded a cupful of milk, tilted her head back, and let loose. The belch that escaped her lips was incongruous to her diminutive stature. True to the principles of behavior, this act garnered such a reaction that it was immediately reinforced and thus has since been reproduced quite frequently.

Fortunately, I am teaching my children the virtue of good manners. Each time she produces an earth-rumbling belch, Kate, the little lady that she is, always says, " 'scuse me."

Fantasy World

2007-12-23T06:58:00.000-08:00

Annie: Hey, Mom. Can I have a popsicle?

Me: Not until after dinner.

Annie: whines But I want one now.

Me: I said no.

Annie: Hey, Mom. Pretend you say yes.

Oh, the workings of the three year-old mind! If only life were that simple.

The Light at the End of the Tunnel

2007-12-20T11:37:00.000-08:00

The purple spiral tunnel slide taunts her, its circular mouth open and inviting, ready to swallow her into twisting and turning darkness. She spends the better part of an hour up there, watching the kids disappear into the long tube, leaving behind only gleeful squeals and laughter. She peers into the slide and sees only the dark. She shouts into the slide and delights at the sound of her voice reverberating through the tunnel. She sticks her head into the opening, quickly withdrawing it, breathless. This dance between paralyzing anxiety and curiosity continues as I climb the structure and make my way toward her. I arrive at the top. She is surprised to see me. Stuffing myself into the small compartment, I spread my legs out into the mouth of the tunnel. She watches as they disappear. I thump my seemingly nonexistent legs against the slide. She smiles with relief. She sits down behind me. I am the engine, she, the caboose. We move ever so slightly into the dark. She panics and grabs the side of the opening. Gently tugging on her free hand, I pull her down into the darkness with me. In that instant before the light goes away, her fear transforms into pure joy. Down, down, down. Together. We emerge into the light. We celebrate. She leaves me at the bottom while she scampers to the top, eager to practice her new accomplishment. And we celebrate each time she reaches the light. Again and again and again.

Alphabet Soup

2007-12-06T06:45:00.000-08:00

Kate's official diagnoses include ASD/PDD-NOS, SPD, and anxiety with a strong OCD component. One of Kate's therapists would like to add a new flavor to the mix: ODD. It is true that Kate is stubborn, a personality trait that runs strong on both sides of the family tree. It is true that she is emotionally reactive, which can be attributed to her struggles with the modulation of sensory input. It is true that she is argumentative, but isn't that related to the poor social skills of children on the spectrum? It is true that she is negative and often complains. Again, a personality trait. Not everybody is a glass-is-half-full kind of person. It is true that Kate tests her limits, but what child doesn't?

Kate receives a variety of services and therapies that address her needs. Occupational therapy for fine motor issues and challenges related to sensory processing. Speech therapy to strengthen pragmatic language skills. Verbal behavior taught Kate how to "use her words". A social skills group to help her interact with her peers. Behavioral health rehabilitative services to teach play skills, flexibility, coping skills. RDI to help Kate become competent in dynamic systems.

So, my question is this- What is the purpose of saddling Kate with this ODD label? Should this label be stamped on her, it might very well change how people look at her. The acronym itself is stigmatizing. Who wants their child labeled "odd"? Also, I am afraid that kids labeled with ODD are perceived as "bad kids". Kate has some challenging behaviors at times, but she is not a "bad kid".

There is no reason to slap this label on Kate. It will not change her needs nor will it change the services she receives. More importantly, it will not change how we are raising her. It will not change how we love her.

The Third Commandment

2007-12-03T16:10:00.000-08:00

On Friday we had what we thought was, at the time, a major breakthrough in our ongoing pooping saga. Kate finally gave up her addiction to diapers, stopped the withholding, and pooped on the potty. Gonzo and I celebrated that night with wine. We were giddy with the success, finally able to see the light at the end of that long, dark tunnel.

Not so fast. Saturday brought back the withholding, stained panties, and accidents. Sunday, more of the same. A frustrated Gonzo said to Kate, "I don't understand. You pooped on the potty on Friday. Why can't you poop on the potty today?"

Her answer was, "It's not Friday. Today is Sunday. I don't poop on the potty on Sunday."

My daughter, the good Catholic, following the third commandment- Remember to keep holy the Lord's day.

Life According to Kate

2007-11-29T14:40:00.000-08:00

When I was 1, I didn't have no teeth.

When I was 2, Annie was zero.

When I was 3, I get a Honda Odyssey.

When I was 4, I goed to Disney.

When I 5, I get a lost tooth.

When I 6, I ride the bus.

When I 7, I will whistle.

When I 8, I will do ju-nastics. (translation-gymnastics)

When I 9, I will get a really lot of lost tooth.

When I 10, I will go on stage.

When I 11, I will play soccer.

When I 12, I climb a tree.

When I 13, I will wear a bra.

When I 14, I take a shower.

When I 15, I will climb on things.

When I 16, I will poop on the potty.

When I 17, I go on bigger rides.

When I 18, I get a bathroom in my room.

When I get a mommy, I ride in the front.

When I 98, Annie beed 96.

When I 100, I beed really big.

My First Meme

2007-11-26T04:55:00.000-08:00

Kristen from From Here to There and Back tagged me for my very first meme. I've been blogging for only 3 months, so this is a new experience for me.

Here are the rules:

1. Link back to the person who tagged you

2. Share 7 random facts about yourself

3. Tag 7 random people at the end of your post and include links to their blogs

4. Let each person know they've been tagged by leaving a comment on their blog

Here are 7 random facts about me:

1. Believe it or not but Delilah is not my real name nor is Gonzo my husband's. Delilah is a nickname that was bestowed upon me during college. Some guy I knew through a friend started calling me that because of my tongue-twister of an Italian last name. It stuck. Gonzo was derived from my husband's difficult to pronounce Polish surname, which I inherited when we married.

2. I was one of the founding members of my college soccer team. I scored the first goal ever in the team's NCAA history.

3. I was a special education teacher in my former life. I loved working with the kids. Their parents, not so much. I was quite intimidated by them and dreaded phone calls, conferences, IEP meetings. Funny how that job prepared me for life with Kate. Funny how being a special education parent will make me a better teacher when I return to the classroom some day. I now "get it".

4. I recently subscribed to this magazine in an effort to conquer my ongoing battle with clutter and disorganization.

5. I am a hobby enthusiast whose enthusiasm wanes rather quickly. My house is littered with remnants of hobbies gone by: scrapbooking supplies, stamps, yoga mat, rollerblades, tap shoes, photography equipment, musical instruments, crochet needles, yarn, cross country and downhill skis, cross stitching crap. You name it, I have tried it. I believe #4 and #5 are closely related.

6. At age 26 I went through what I refer to as a quarter-life crisis and pierced my belly button. It seemed like a good idea at the time, but after 3 kids, all that remains is a nasty scar. I was in the middle of Target one day when I overhead a young girl telling her friend she wanted a piercing. I shamelessly whipped up my shirt and made her look at my scar to give her something to think about.

7. The summer before my junior year of college, I was mirandized. Yep, as in "you have the right to remain silent," etc. Before you go and think I'm some kind of criminal, please let me explain. Two friends from high school, who are now ex-friends, came to visit me at school. After a night of partying they thought it would be funny to break into people's cars and steal their stuff. And bring it back to my apartment. Which is how I got involved. My ex-friends were arrested. The police called me in for questioning. I was read my rights and was told I could be charged with aiding and abetting stolen property. I told the truth, that I had no idea what my ex-friends had been doing that night, that I was asleep when this all happened. They let me go, and I never spoke to those ex-friends again.

I feel way out of my league with this whole tagging thing, so I am going to sit this one out!

My Daughter the Comedian

2007-11-25T14:53:00.000-08:00

In the weeks leading up to Thanksgiving Kate became enamoured with A Charlie Brown Thanksgiving and could be found scripting entire scenes at a time. Her favorite scene was the one in which Charlie Brown prepared a feast consisting of toast, popcorn, pretzel sticks, and jelly beans for his friends. Gonzo's mom heard about Kate's fondness for this particular scene and thought she would surprise Kate with a feast of those items.

Upon arriving at Grandmom's house, Kate announced that she was hungry. She made her way over to the table and eyed up the spread. Within earshot of the entire family Kate exclaimed in a startling accurate rendition of Peppermint Patty's voice, "What blockhead cooked all this?!"

The entire family, Grandmom the Blockhead included, roared, thus reinforcing the behavior. Therefore, "what blockhead cooked all this" has become a favorite phrase, uttered over and over and over.

Lies, Lies, Lies

2007-11-19T04:25:00.001-08:00

After the trauma of birthing a large baby, I took comfort in a comment I heard from everyone: Bigger babies sleep through the night sooner. I heard this little nugget of wisdom so many times I thought it was a irrefutable fact. Four months into this baby thing I can now say with confidence: You are all liars.

Bigger babies have bigger appetites and need to spend more time eating and less time sleeping is more accurate.

Little Fella wakes at least once, sometimes twice, during the night. He's not just hungry, he's ravenous. Now I'm hearing from those same people: Let him cry it out. He's big enough. He doesn't need to eat. Sounds great, but I don't think crying it out makes hunger go away.

So, here I am, four months into this baby thing, not sleeping much and lugging around an 18 pound giant baby. At this rate, I'm going to lose my mind from the lack of sleep, become addicted to caffeine, and need some serious physical therapy to correct the damage in my muscles and tendons.

Now, I'm off to pour my third cup of coffee for the day.

A Mortifying Playdate

2007-11-13T11:52:00.000-08:00

I arrived at Lori's this afternoon to retrieve Annie from a playdate with Jane. Immediately I noticed that Annie was wearing different pants than the ones she wore to school. Pants that were not her own. Oh. No. This could only mean one thing.

I turned my wondering gaze toward Lori. "Um, Annie had an accident," she said, answering my silent question. My heart skipped a beat.

"Pee?" I asked hopefully.

"Um, no," she answered.

Oh. No. So, poor Lori, who just finished writing about her pooping saga, poor Lori, who has been going through a difficult time, had to clean up the mess. I am so sorry, my friend. If it's any consolation, Annie peed all over my kitchen floor as soon as we got home.

Buckle Up

2007-11-08T10:25:00.000-08:00

For quite some time now Kate has been buckling herself into her car seat. Having expressed the desire to be a big girl and buckle herself in, I allowed her to do so. This skill was a source of pride for her, something she could do without my help. And so the routine of climbing into the car countless times each day and fastening her restraints became, well, routine. Automatic. Never a power struggle. Something she did as naturally as blinking. Until one day.

Kate climbed into the car after school and dutifully arranged herself in her car seat. I proceeded to pull away, assuming she was properly restrained. I glanced in the rear view mirror only to see her sprawled across her seat sideways. Unable to pull over, I demanded that she buckle herself in at once.

"What will happen?" she asked curiously.

Well, honey, if I were to slam into another vehicle, the simple laws of physics dictate that you would continue to move at the rate of speed at which I was traveling, at which point you would be ejected from our vehicle through the glass windshield, causing catastrophic, most likely fatal damage. Basically, you would be killed upon impact.

"You would get very hurt," I answered, without going into any detail.

My answer further piqued her interest. "Will my eyeballs fall out?" she asked breathlessly.

"Yes."

Click.

No problems since that conversation.

A Memory from Long Ago

2007-11-07T10:20:00.000-08:00

"Remember I was 3, and I cry at Miss Marci's?" Kate said to me recently while driving to school.

Do I remember? How could I forget?

The summer before Kate was to start preschool, we enrolled her in a social skills group for children on the spectrum with the hope of combating her habit of screaming and throwing herself on the floor. The group was run by Marci, a licensed psychologist and movement therapist. Every Wednesday evening that summer we would drive 45 minutes for Kate to "participate" in this group. I say "participate" because Kate would spend the entire session rolling around on the floor, alternating between screaming and crying. Eventually, though, Marci was able to woo Kate through music and dance. By the end of that summer, Kate was a willing and happy participant, following Marci's directions and interacting a little bit with the other children.

"Yes, I remember," I replied.

"I cry a lot," she added.

Sensing that Kate was interested in having this conversation, I probed a bit further, hoping she wouldn't shut down, which often happens when she feels pressured. "You did cry a lot. Why did you cry at Miss Marci's?"

"I wanted you, Mom."

Those words made me want to turn the clock back two years, pick up that screaming toddler, and hold her close to my heart. Those screams weren't about non-compliance or defiance. Those screams were simply a little girl telling everyone she just wanted her mommy.

The Joys of Traveling

2007-11-05T06:53:00.000-08:00

Traveling with a child on the autism spectrum can be a challenge. Traveling with a child on the autism spectrum who has a dreadful fear of the toilet can be a nightmare.

To prepare Kate for a weekend getaway in the mountains, we essentially outlined the entire trip for her. School first, then lunch, then long car ride, then check-in at front desk at mountain hotel, then go to mountain hotel room, then unpack, then go swimming... and so on. You get the idea. We showed Kate pictures of the resort we were staying at and talked about the activities we would be doing. We brought some of her favorite toys from home, and of course, her potty seat.

It should be noted that Kate is quite particular when it comes to toilets. To date she has used only five different toilets. Our powder room toilet, the toilet in Grandma's powder room, the toilet in Grandmom's powder room, the toilet in Jane's powder room, and the toilet in the right-hand stall at school. She has never used a toilet in a public restroom, which presents obvious problems when leaving the 2-mile radius around our house. In Kate's world, toilets must meet certain standards- they must have lids, they must have "big water" (meaning a full bowl of water), the water must stay up, and the flush must not be loud. If those criteria are not met, anxiety abounds, and a full-blown tantrum and wet pants result.

It should also be noted that Kate has yet to have a bowel movement in the toilet. Even the mere suggestion of using the toilet for that function instead of a diaper further ratchets up the anxiety level, causing her to withhold her bowel movements for up to a week at a time. That, however, is a story in and of itself and worthy of its own special post.

Fortunately, the toilet in our mountain hotel room met all of the necessary criteria. However, Kate had a great deal of anxiety using it the first time. For over a half hour Kate danced and twirled and flapped around the bathroom, repeatedly asking if the toilet had a lid, if it had "big water", if the water would stay up, if the flush would be loud. Yes. Yes. Yes. No. Finally, the desire to go swimming beat out the toilet anxiety, and we had success. Kate's peeing repertoire has now been expanded to six toilets.

It was hit or miss the rest of the weekend. By Sunday afternoon, our hotel bathroom was littered with eight pairs of wet and/or soiled princess panties, two pairs of pants, one pair of tights, one pair of pajamas, one pair of socks, and one pair of shoes. Needless to say, I am glad to be home. Home is where Kate's favorite toilet is. And that means a happy, dry little girl.

Surrounded by Affluence

2007-10-26T06:33:00.001-07:00

My scratched minivan waits in line every morning in front of Kate's school amid the Lexuses, BMWs, and Hummers, an outcast. I do not mind. It is reliable and accepts the fifty-plus miles I put on it each day without complaint. We are an average, middle-class family. We live in a nice neighborhood, in a nice house that feels a little cramped at times. We do not mind. Luxury vehicles, second homes, exotic vacations, and black tie cocktail parties are foreign to me. I do not mind. We are happy and healthy. That is all we ask for.

One day a letter came home from Kate's school. It explained a wonderful program for preschoolers who are at risk for academic failure due to low income. The program is funded through the state, and children whose families meet the requirements are eligible to attend preschool for free. I read the letter, then tossed it, as it did not pertain to us.

The next day when I pulled up to Kate's school, the office manager flagged me down. "Did you get the letter I sent home yesterday?" she asked cheerfully. "Yes, I did," I answered somewhat quizzically, not fully understanding why she was asking me. "You can send Annie here. For free!" Free? Why would I be able to send her here for free? And then it dawns on me. She thinks we are a low-income family. She thinks we cannot afford to send Annie to preschool. She thinks that my child is destined for failure because we are poor.

Flustered, I stumbled over my answer, "Oh, no, we don't qualify for that program." I failed to mention that Annie is enrolled in a different preschool, one that is around the corner from our house. That we send her there because it's close to home, so she will make friends in the neighborhood. So we can carpool. Because the twenty minute drive each way to Kate's school really sucks, and I won't be able to do it next year once Kate starts kindergarten. That I wanted Annie to attend the same school for two years instead of having to move her next year. That if Kate didn't have an IEP she would have gone to the school close to home. That this is really none of her business. "Oh? You were one of the families we were thinking of. You know, that could use a little help." This time my answer was more firm, "No, we don't meet the criteria. We are doing just fine, but thank you for thinking of us." I drove away, leaving her red-faced and speechless.

I hope she learned a lesson that morning, that it is wrong to make assumptions about people. That driving a minivan does not mean that someone requires financial assisstance. That being surrounded by people who have too much, does not make a person poor. That there are families out there who need help, but we are not one of them.

Friendship

2007-10-16T11:51:00.000-07:00

"Kate, are you my friend?" asked a little girl in Kate's prekindergarten class.

"Yes," Kate responded promptly.

"Kate, are you my friend?" the little girl persisted.

"Yes," Kate repeated.

"Kate, are you my friend and nobody else's friend? My best friend?" the little girl asked.

Kate gave her a puzzled look, not understanding the exclusion that goes along with being a best friend. "I friends with everybody. All everybody are friends," Kate answered.

Satisfied with her answer, the little girl took Kate's hand and the two of them bounced toward the playground. Friends.

Dancing Queen

2007-10-09T13:35:00.000-07:00

Each day she asks if it is Tuesday. Tuesday is Dance Class Day. Dance Class Day is a special day. A holiday. Every Tuesday she dresses herself in pink from head to toe. Clutching her pink bag, she bounces into the dance studio, pony tail bobbing.

I watch from afar. She does not speak to the other girls as she takes her place at the very end of the row. She stands a little too close to the girl on her right. The music starts. She bumps into the girl. The girl does not seem to mind. Her eyes burn with intensity as she watches the teacher. Shuffle-hop-step. It takes her a moment to process the move and execute it, but she does it. The rest of the class has already moved on to the next foot, then on to the next step.

I watch from afar, and I fret. Her processing and motor planning issues are evident. It is difficult for her to coordinate her arms and legs. She is always behind.

Then I see it. That smile. Stretched from ear to ear. And I relax. Keep dancing, sweet girl.

A Walk in My Shoes

2007-10-02T07:16:00.000-07:00

Last night I came home to two orange girls. Orange ink from a stamp pad covered their hands, feet, and faces. Handprints covered the kitchen table and chairs. Footprints danced around the kitchen floor. A sheepish looking husband was found on the couch, not moving a muscle for fear of waking a slumbering Little Fella on his chest. "Sorry," he managed apologetically. I shot him a dirty look, let out a loud sigh, and quickly busied myself in the clean-up process before the girls inflicted any more damage. "I don't know how you do it," he said.

With those words, my irritation vanished. During the hour or so I was out of the house, he got a glimpse of what my life is like on a daily basis. And now he understands.

So, dear husband, now you understand the mountain of laundry, the unmade bed, the empty refrigerator, the stack of unopened mail, messy rooms, my short fuse, uncooked dinners, why I fall asleep on the couch at 8:30, why sometimes I just need to sit next to you without saying a word and just enjoy the quiet. Thank you for taking this walk in my shoes. And thank you for understanding.

Pheel the Magic

2007-09-30T14:20:00.000-07:00

162 nights spent with eyes glued to the TV.

73 heartbreaking losses.

219 beers to drown the pain.

730 curses muttered.

89 sweet victories.

89 prayers answered.

14 years in the making.

1 ecstatic husband.

Priceless.

Go Phils.

Sweet 16

2007-09-25T11:21:00.000-07:00

"When I'm sixteen I will poop on the potty," she said to me today, out of the blue.

I laughed out loud at the sheer absurdity of her statement, but on the inside I cried, for when Kate gets an idea stuck inside her head very little can be done to change it. So, I'm trying to look at the bright side. Only eleven more years...

A First First Day

2007-09-20T10:32:00.000-07:00

Last week marked an important milestone in Annie's young life- her very first first day of school. We enrolled her in a nursery school in town that touts its program to be "a loving and gentle first school experience for three year-olds". It is your typical nursery school, complete with cheerful, sweet women who just ooze enthusiasm and speak in the same lilting sing-songy voice to children and adults alike. It really is lovely.

Annie was all smiles on her very first first day, excited to be a big girl like her Kate. I, on the other hand, was a nervous wreck. Would she miss me? Would she cry? Would I sob unabashedly right in front of her? Will she make friends? Will she pee her pants? Will she know to ask a teacher if she needs help?

However, when it came time to drop her off, I was remarkably calm. So much so that when a teacher swooped over to the car and plucked Annie out of her car seat, I simply smiled at her excited smile and wished her lots of fun. And as I drove away, I teared up a little bit, for that tiny sprite just took another step toward growing up.

That brief flash of sadness was quickly replaced by something else. Excitement. As much as I will miss having her here with me, I truly am excited for her. Excited for her to learn new things, meet new kids, discover who she is. In school she will not be the middle child, the girl who has a big sister with autism, the girl with the baby brother. She will simply be Annie.

Magic Shoes

2007-09-17T06:19:00.000-07:00

Over this past weekend we celebrated Gonzo's grandmother's 85th birthday. Four generations crammed into her small rowhome for the festivities. Small children ran amok, jumping on beds and twirling in circles on the postage stamp-sized deck out back. Tweens and teens sprawled out on the floor text messaging their friends, together, yet each in their own separate world. The men congregated around the television to cheer on their favorite team in the midst of a pennant race. The women hustled and bustled around the kitchen, preparing food for the masses and reliving memories of the past. A good time was had by all.

As the celebration began to wind down, I made the necessary preparations for the long car ride home. Gave the standard 5 minute warning, nursed Little Fella, changed his diaper, put the girls on the potty, gathered blankies and loveys, put jackets on, re-packed the diaper bag that somebody had rifled through looking for snacks, said our goodbyes.

"Oh, no!" wailed Kate. "My shoes!" I glanced down at her bare feet. Damn that child and her missing shoes.

"Do you remember where you took them off?" I asked hopefully. She wandered toward the deck, where she had spent much of the afternoon. The shoes were not there. Instead, Kate became enthralled, yet again, with watching the traffic light a few blocks away. I knew that tearing her away from the glorious traffic light would be next to impossible, so I continued the quest on my own.

Every nook and cranny of the house was searched. The shoes were hiding in a remote corner under the bed in one of the three bedrooms. With a sigh of relief, I gathered them together and presented them to their rightful owner who exclaimed, "They found me!"

"They found you? Oh, they must be magic, " I replied with a tiny bit if sarcasm.

Kate's eyes grew wide. "Magic shoes, " she breathed and put them on. Bidding farewell to the traffic light, she turned and walked into the house, to the front door. Magic shoes, indeed.

Your Voice

2007-09-14T04:24:00.000-07:00

Little Fella's melodic cooing filled the air. Annie turned to me, a question in her eyes. "What's Little Fella doing?"

"He's just practicing his voice," I answered.

"He doesn't have a voice. He can't talk yet!"

"You're right, he doesn't say any words yet, but he still has a voice."

Annie thought this over, carefully. "Where does you voice come from, Mama?"

The immediate thought that popped into my head was a logical explanation, your voice comes from your throat, from your vocal cords. Meeting her expectant gaze, the real answer became clear. "Your voice comes from your heart."

Not Welcome

2007-09-10T06:21:00.000-07:00

"We don't deal with kids with IEPs," the new Pre-Kindergarten teacher was told. "Once the evaluation report is complete, he will be asked to leave," explained the principal of a small Catholic school in a small community not far from ours. The little boy is "just like Kate", meaning he has a mild form of autism.

Oh. My. I could say nothing, paralyzed by confusion and sadness and anger. And so those words swirled around in my head last night. And all day today. Those words came to rest on my heart, leaving behind a heavy ache.

If I had the words, this is what I would have said to that new teacher: You will love having this little boy in your classroom. He needs structure. He needs understanding. Take the time to know him. Each interaction makes a deeper connection. He is a visual learner. Teach him through pictures. Have a picture schedule for him and review it with him each morning. Warn him in advance of transitions. Expand his play. Engage him by being silly. Provide him with lots of opportunities to interact with his peers. Show him how. Have a quiet spot in the room filled with lots of fidget toys and pillows and lotion and soft music in case he gets overwhelmed and needs to regroup. He is a really neat kid. Take the time to look at life through his eyes. It really is beautiful. Oh please, just give him a chance. Please, please, make this work. Take care of this gentle soul.

If I had the words, this is what I would have said to the principal: This little boy is a child, not a label. He likes to run and play and laugh just like any other child. He is different, not broken. It is your school and your ignorance that need to be fixed, not him. He is a child, not something to be discarded because he is deemed to be unworthy. You owe it to him and to yourself to make this work. He is a part of this community, just like you and me. His strengths and uniqueness cannot be expressed in the confines of a fifteen page document. Help him and he will show you the beauty of life.

Our children are here for a reason. They are here to teach others about tolerance, about acceptance, about unconditional love.

And So It Goes

2007-09-05T04:47:00.000-07:00

I was in the process of drafting a sentimental post about the first day of school being a new beginning, a whole new world of possibilities, blah, blah, blah. Instead, reality hit today, and it hit hard. My first feat on this first day of school was getting three children five and under out the door, fully dressed, fed, and properly groomed. Anxious to make a good first impression, I fretted over Kate's decision to wear the strappy neon blue sundress that, if she so much as breathes, out pops a nipple (am I allowed to say that?). Paired with that lovely outfit are her purple Crocs, or should I say Croc in the singular form. The child has a knack for widowing shoes, losing one and leaving the other behind to grieve the loss of its partner. I considered bribing her to wear another pair but decided it would be easier to rip apart my already disorganized house in search of the Croc's missing mate. Turns out it was hiding in the dreaded bathroom.

Ah, the bathroom, where most of my battles are fought these days. Kate has a picture schedule of her morning routine to increase her independence and to stave off any battles that might ensue. And on that schedule is a picture of a toilet to remind Kate to, that's right, use it. However, Kate enjoys just looking at the picture and prattling on about how big girls use the potty. All talk, no action. Each of my gentle reminders to sit on the potty was met with an increasingly louder, "No." Knowing that she has a bladder of steel and can hold it until the mid-morning trip to the bathroom at school, I decided to forgo any more arguing. Annie, on the other hand, will have an accident if she is not placed upon the toilet the minute her eyes open. Although she insisted, kicking and screaming, that she did not need to go, she did. Thankfully, a large puddle on the floor was averted.

Next came scarfing down breakfast, brushing teeth, and combing hair. For the most part, these activities were uneventful, except for a little screaming while brushing Kate's bedhead hair. We flew out the door and tucked ourselves neatly into the trusted minivan. Miraculously, we made it to school right on time. And so it goes, each weekday morning until June, a new school year, a new beginning.

My Personal Hell

2007-09-01T13:47:00.000-07:00

Being raised in the Catholic faith, I was led to believe that if one dies with a mortal sin on one's soul, one goes straight to Hell. Because we are inherently flawed humans and engage in sinning on a regular basis, the only way to avoid a trip to Hell is to cleanse your soul by going to Confession. Unfortunately, my last confession was nineteen years ago.

So, what would Hell be like? I tend to think that it is different for everyone. Individualized. My personal Hell would be a small room, roughly the size of, say, a powder room. And in that small room I would be trapped with two small girls. The bigger girl would have a wicked case of encopresis and a dreadful fear of having a bowel movement in the toilet. The smaller girl would sit on the toilet only to get right off and urinate in a big puddle all over the floor. Add to this lovely scene that I would be required to read Once Upon a Potty eighty million times.

This is what it would be like for me, if you believe in this sort of thing, of course.

Little Fella

2007-08-31T09:18:00.000-07:00

Little Fella is somewhat of a misnomer for our third child, who tipped the scales weighing in at a whopping 9 pounds 7 ounces at birth. Needless to say, I am glad he no longer occupies my body. At the time of Little Fella's arrival, Kate's favorite movie was Finding Nemo, with her favorite scene being the one in which Dory attempts to speak whale to what she thought was a little sea creature, which ended up being a giant whale. Anyway, Kate committed this scene to memory and could be found scripting it throughout the day. As soon as we brought the baby home, she began referring to him not by his given name, but as Little Fella. And it stuck.

I am still getting to know Little Fella, this newest member of our family. I know that he likes to be held all day, and I know that he is amused by the antics of his older sisters. He likes to take naps on his dad's chest but not in his crib. He likes to snuggle against my neck as he falls asleep at night, and I like hearing the soft whisper of his breath. He recently learned how to smile, and every time I see that smile it makes my heart sing.

Kate and Annie

2007-08-30T08:41:00.000-07:00

Though two separate beings, it is impossible to write about one without mentioning the other. Two sisters, spaced two years apart, so intertwined. Much like twins, they share their own secret language and are best friends or worst enemies.

Their relationship got off to a bit of a rocky start, with Kate throwing herself to the ground and screaming, "PUT BACK!" the second we brought Annie home from the hospital. Not bad for a toddler who was quite echolalic and did not have a whole lot of spontaneous language in her repertoire. After a few days of the screaming, curiosity set in. During Annie's first year of life, she was subjected to the constant poking and prodding of her older and not so gentle sister. Kate enjoyed poking Annie's eyes, pulling apart her toes, sniffing her, and Kate's favorite, laying on top of her. Fortunately, Annie was a content baby and tolerated, and was even amused, with these intrusions. When Annie reached toddlerhood, though, she started fighting back. No longer did she enjoy being man-handled constantly. So, Annie began hitting, or pulling Kate's hair, or knocking over the line of toys that could not be moved out of place for any reason. Annie became very in-tune to Kate and knew how to push her buttons, and she did. And when Kate's buttons are pushed, look out.

Needless to say, the first two years of having two children were very trying. Their relationship began to improve when Kate was 4 and Annie was 2. Therapists came to our home and included Annie in Kate's therapy sessions. They worked on social interaction, sharing, play skills, language development. At first, Kate resisted and tantrummed. Annie was a willing participant, eager to play and learn with her sister. Slowly, Kate's resistance subsided. She began to play next to Annie, and eventually, with her.

Kate is on the autism spectrum but is not shy. She is the first to greet her classmates and wave to strangers on the street. Maintaining conversations and sustaining social interactions are still difficult for her, but improving. Kate is passionate, strong-willed, fun-loving. She is active and uses all of her senses to experience life to the fullest. Annie is not on the autism spectrum. She can be shy, slow to warm, but once she is comfortable, becomes quite the little chatterbox. Annie is sweet, kind, and inquisitive. She is helpful and will stand up for herself when necessary. Both girls love playing on the playground, dressing up as princesses, and both girls have a quick smile and infectious laugh. They have become who they are because of each other. Two sisters, best friends.

Happy Medium

2007-08-29T05:13:00.000-07:00

Sophomore year of college was one big party. Large amounts of alcohol were consumed for any reason at all. Dining food suck? No problem, half a bottle of Mad Dog and you won't even taste it. Ex-boyfriend going to be at the same party? Poor dear, let's do some lemon drops, that'll make you forget him. Blizzard coming? Nothing else to do, better stock up on some So Co. By the end of that year it was a miracle my liver was still functioning, although I may have lost a few IQ points.

As the spring semester came to a close, it was with a bit of relief that I packed the contents of my life into my trusty 1989 Pontiac Grand Am and headed home. Home, to a blissfully sweet, boring, alcohol-free summer. The only plans I had were to work at my aunt's nursery school. Couldn't get into much trouble with a bunch of toddlers.

After a few weeks of summer break, a friend I had met earlier that year called. Lauren lived a few miles from where I grew up and was calling to see if I wanted to hang out with her and some of her friends from high school. I did and that's how I met him.

The minute I met Gonzo I knew he was going to be my future husband. I know that sounds cheesy, but we clicked immediately. He was easy to talk to and made me laugh. Suddenly, my boring summer was filled with him. Trips to the beach, baseball games, camping, spending time together with friends, just plain fun. An unexpected summer romance. My new best friend.

But alas, we were young and carefree, and while we had a blast that summer, we were unsure what the fall semester and distance would do to us. So we agreed that what we had was a happy medium. More than a summer fling, not official relationship material. School began, and we kept in touch the old-fashioned way before the advent of the internet and email. We wrote letters, sent cards, talked on the phone. We visited each other at our respective schools, saw each other over breaks. Our happy medium had indeed blossomed into a real relationship.

Fast forward 13 years. Gonzo and I have been married for 8 of those years, have 3 kids, own a house. We stood by each other through the death of grandparents, uncles, a friend, students, through the serious illness of a sibling. Friends married, divorced, had kids, moved away. Our family has grown to include 5 nieces and 2 nephews. We've laughed at the silly, endearing things our children do, and we've cried through frustrating moments and scary unknowns. We are bread and butter, milk and cookies, macaroni and cheese. A true partnership. Side by side we stand to face whatever comes our way.

Floating in Space

2007-08-14T12:01:00.000-07:00

Kate announced her arrival into this world with a lusty scream and flailing limbs. From the beginning she was in constant motion. Her tiny baby feet twirled like the propellers on a helicopter ready for take-off.

The bigger Kate grew, the more her body moved. Arms flapped, head shook, body twisted. By age 2 1/2, she could be found spinning in endless circles or running aimlessly back and forth across the room. She threw herself forcefully onto the ground whenever someone came into our house, and she developed a fondness for dragging her head across the floor.

It was at this time that we became concerned that something more might be going on instead of Kate just being an active little girl. Language development plateaued and did not progress beyond simple labelling of objects. Letters, numbers, colors, and cars were an intense obsession. Kate could walk through a parking lot and rattle off the make and model of every car, but she could not answer a yes or no question. Tantrums occurred with small changes in her environment, such as a chair being moved out of place. Instead of playing with toys, she lined them up or repeatedly put them into and took them out of a basket. Kate was evaluated by the county early intervention team and qualified for special education services for delays in all areas. A developmental pediatrician diagnosed her with autism and sensory processing disorder shortly after her third birthday.

Kate's first occupational therapist, Jo, was a sensory-trained OT who had a deep understanding of the autism spectrum and sensory processing disorder. Jo helped me understand the reasons behind Kate's constant movement and showed me how to help her. One of the greatest insights Jo gave me was the reason behind Kate's need to slam her body into things. To Kate, Jo explained, it might feel as though her body is floating in space. That feeling of being untethered, Jo continued, is the reason she seeks out that deep pressure; she needs to feel connected to something; this is how she experiences her world; this is how she figures out where she begins and ends.

Two years later, the floating in space analogy stays with me. It allows me to see life through Kate's eyes. That two people might experience the same thing in a totally different way and there's nothing wrong with that. That when we look through another's eyes, we understand them better. That we are all floating in space through this life and need to be connected to one another to help us find our way.