Avoidance

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.

Realization

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

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.

A Fabulous Day

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.

Gypsies

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.

Wordless Wednesday- Autism and Play Skills

The Things I See

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.

Snow Day

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.

Watch Your Mouth

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

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

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.

A Walk Toward Hope

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.

A New Habit

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."

The Light at the End of the Tunnel

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

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

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.

A Memory from Long Ago

"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

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.

Friendship

"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

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.