From Autistic Parenting

Losing a Pet in an Autistic Household

When our beloved seventeen-year-old cat was dying, Tyoma, our autistic son, reacted thus:
“Oh. So, then we’ll get a new kitty.”
No emotional depth. No concern. No sadness.

This did not fool us.

Kitty Pearl filled our son’s daily imaginings. Wobbly scratching posts and sinister-looking grooming contraptions were built in her honor. He wrote her sentimental “I-love-you-kitty” letters and taped kitty-centric schedules near her water bowl. Homemade Kitty Forts stretched across rooms and cluttered staircases.

Kitty Portal

Then there were lists. Page after page of numbered instructions pertaining to the cat:

  1. Pet kitty gently.
  2. Add ice cubes to fresh water.
  3. Brush with the fur.
  4. No pestering.

Tyoma needed to organize his interactions with Pearl, not just to remind him of his duties but also to cope with the delicious and abhorrent impulse to pull her tail.

Pearl’s declining state preoccupied Tyoma later that evening. He spread inky equationed papers on the bed and announced that his calculations showed Pearl would live until August 4, 2014. Propelled with anxious, hyperkinetic energy, he expounded: “The next day (hop), Pearl will be cured (hop) and returned to live with us forever (hop, flap, twist, jump).” I nodded and replied, “I hope so.”

The Sunday before Pearl passed, Papa suggested something different for their weekly project. He asked Tyoma if he would like to build Pearl a casket. Tyoma’s face whitened. “No burial,” he said, “Cremation only.” Within ten minutes, an atomic autistic meltdown consumed him. Books and tears flew. A hole in the woods behind us was too dark and ugly for her, he howled.

After an hour of outcry, he vanished into the computer room, asking not to be disturbed. He resurfaced with the creation to the left.

This Boardmaker sheet is a window into his mind. It translated the enormity of Pearl’s kidney failure into something concrete and measurable.

Like other autistics, he needed to anchor to the tangible before venturing into the realm of emotion.

Every few hours, he filled out a new worksheet and tacked it to the refrigerator. He helped her the way he knew best—with discrete bits of information recorded on paper.

We held a vigil for Pearl on her final day. Tyoma read her his favorite stories as I stroked her. He addressed her in the same sing-songy voice I reserve for sick days and jarring injuries. His imitation of my soothing strategies struck me. Autistic children retain more than we realize.

Papa came home early to sit with Tyoma while I took Pearl to the vet.  We did not disclose the ultimate purpose of the trip, to keep departure subdued. None of us copes well with strong emotion.

An hour into the appointment, Papa told Tyoma.

My cell rang as I finished tucking a homemade blanket around Pearl’s inert form. Sorrow weighed upon me so heavily, answering required unexpected resolve.

Initially, I mistook Tyoma for a shrill, unhinged octogenarian who dialed a wrong number. His hysterical voice rattled my cheap crackly phone:

“I know about Pearl.  Are you going to cremate her or bring her home? Is she dead? Are you going to bring her home? Is she dead? Will I see her dead body? Will you burn her on the charcoal grill? Is she dead? “

He pleaded for details about the cremation: where would it be, how long would it take, and could he keep her ashes in his room?  I squeezed out appropriate answers and hung up.

The significance of cremation finally occurred to me. Remains in our home were less of a transition than burial, which held a sad and somber finality.

Tyoma continued to call for reassurance. My cell chimed cheery tunes as I exited the vet’s office. He left five more voice messages and sent six emails before I arrived home to hugs, tears, and many, many lists.

The day after Pearl died, I thought of her constantly. Her absence seemed inexplicably more powerful than her presence; like when I lost my watch weeks ago. I never realized how often I checked the time until my empty arm reminded me. How sad the stripe of skin on my wrist registered emptiness more than presence.

Tyoma processed his grief with questions. The first wave concerned the minutia of biological death, followed by a shower of spiritual inquiries. At last, he asked how I felt. A grief inquisition ensued.  As if he knew emotion collapses me inward, Tyoma tugged and pulled each word out of me, like an invasive, but beneficial medical procedure.

qs

He led me through sorrow as if he were an expert. Each question I answered took me closer to peace and acceptance.  Perhaps all little askers of questions are armed with the tools to heal. Great sadness can come from passing, but grief is not a monster to slay. Grief means a life changed yours.

Months have passed. Pearl lives on in Tyoma, but not in a dark, sad way. She inhabits his imagination, her ghost flits by windows and lingers half-perceived in kitty-fictions and Tyoma-escapades. We welcome her as an addition to the family. To be spoken of and remembered.

Pearl may have died, but she’s in my heart.

She’ll go when I do. Do what I do.

Okay, she died, but she’s in my heart, yeah!

Pearl may have died, but she is in my shoe.

She’ll go when I do. Do what I do.

Okay she died, but she’s in my shoe, yeah!

Prosopagnosia and Asperger’s in the Family

Prosopagnosia

When an average person meets 10 strangers, they can recall at least six of the new faces in the future. Two percent of the population does not have this facial recognition skill–they have prosopagnosia, or face blindness. My father is one of many on the autism spectrum living with face blindness.

In 1975, prosopagnosia caused the only lingering conflict in my parent’s marriage.

Mom, who became frustrated with her long hair tangling in her scuba diving apparatus, decided to go for a hip white-girl afro.  Dad was supportive until she returned from the salon.

Her transformation confounded him.  Dad spent the next six weeks giving her the side-eye, trying to wrap his mind around her frizzy not-my-wife locks.

Mom Hairstyles

Dad could not articulate why the change disturbed  him, but it did. At night, I heard them deliberate through the heating ducts:

“You look beautiful, Meem.  But it’s just not…you… The long dark hair is you. ”

“It’s not about beauty; it’s about me being tired of ripping my hair out on those goddamned regulators. I’m done with it. And I’m not braiding my (expletive) hair. That’s ridiculous. Then I’m yanking a whole braid out of my (unprintable) regulator….”

Mom felt fabulous with her new carefree hair but eventually realized something was awry—it was out of character for Dad to oppose her personal style choices.  Two frizzy perms looks later, she begrudgingly twisted her hair into tight, Miley Cyrus buns.

Problem solved!

We know about Dad’s face blindness now. Years of experience plus an Asperger’s diagnosis sorted it out for us.  We grasp at last why certain movies are hard for him to follow (how can you understand what’s going on when you can’t tell people apart?) and why large crowds disorient him (all blondes are the same person!).

Dad’s experiences clued us in to our son’s struggles with prosopagnosia. Tyoma has no sinister intentions when he insists I wipe off my lipstick.  The lipstick simply renders me unrecognizable as “Mama.” To this day, my hair is never over-curled, lest the whole family revolt, griping and complaining until I straighten and smooth my locks.

Hooray

Prosopagnosia!

What a lovely excuse to remain forever unmade and unkempt!

Like my Dad and Tyoma, many on the autism spectrum are affected by face blindness.

In fact, those with moderate face blindness might not realize the extent of their inability to properly code and retrieve faces until they uncover the marvelous coping mechanisms they use to compensate.

If adults like my father and me stumble upon their facial recognition difficulties late in life, imagine the struggle children must face when they have prosopagnosia.

The sooner we identify prosopagnosia in children, the swifter we can offer supports and teach facial navigation skills. If your child is on the autism spectrum, these signs can help you recognize face blindness:

  1. Distress or aggression over changes in a family or friend’s appearance.
  2. Misidentifying people based clothing, hairstyle, height, or weight.
  3. A strong preference for cartoons or animal shows in conjunction with an aversion to live television programs/movies.
  4. Anxiety in daycare/school settings combined with a clinginess to teacher (children are the same age and size, whereas the adults are more recognizable).
  5. Fear of crowded areas.
  6. Confusing caretakers for others with similar hair or clothing.

Part two of this article will focus on coping strategies. Your stories and input are very welcome!

 
A silhouette of Mom before her haircut. If you look into the faint stream of bubbles rising from her air regulator, you can see her hair floating.

   

Taking the Famous Faces Test From Musings on an Aspie
Prosopagnosia–Face Blindness in Action From Autistic Aloha

Autistic Warriors

Warrior

We have no autism warriors in this house. We do, however, have Autistic Warriors.

As the neighborhood mothers and children gather at the bus stop two houses down, two Autistic Warriors wait for their bus.

Autistic Warrior the Younger runs in circles and cries “Wooo!”

Autistic Warrior the Elder smiles. “Ahhhh, such ferocity! He fights a brave battle against the anxiety of imminent school bus arrival!”

At the craft store, Autistic Warrior the Younger dons fearsome headphones to shield himself from the horrifying banalities of cashier-induced platitudes.

He fights a more formidable battle another day. The sour faces of judgmental and prejudiced shoppers sneer. They expect silence and order as they purchase their bananas and frozen Celeste Pizzas. To defeat them, Autistic Warrior the Younger unleashes his greatest weapon:

“Hello! My name is Tyoma. Would you like to know a bit about me? I have autism, Tourette’s and OCD. I could read before I was two and I am profoundly gifted. Sometimes my Tourette’s makes me jumpy so I can’t be still. Thank you and nice to meet you.”

These are the Younger’s words–a script he wrote to relieve the inexorable internal pressure of not knowing what to say. He chooses when and where to use it.  More than one pretty brunette at Target has been startled by his impromptu delivery.  Scowling cashiers, previously confounded by chirps and defiant hops, soften their features.

His introduction often evolves into pleasant conversations about numbers or merchandise.  We hear, “My xxx has autism, too!” more frequently than you would predict. Once, a cashier with dangly earrings and sparkly eyes leaned forward and beamed, “My son is autistic, too.” I took a second glance, and noticed the warrior horns of a True Ally emerge, pointed and imposing.

Self-advocacy is potent weapon against Autistic Warrior’s foes, stigma and ignorance. And when the Younger Warrior is weary of the battle and chooses not to engage, I remember. People imbibe auras.  Emit calmness and confidence, I remind myself, never shame or exasperation.

Self-advocates and allies speak in many voices; some soft and peaceable, others loud and ferocious. Regardless of volume or style, connecting personhood to autism wins every battle.

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Compulsive Behavior: A Plan For Us All

Summer Curses

Tourette’s season is here.

The hottest, heaviest weeks of the year amplify tics to unprecedented levels. Clouds of stupids, shut ups, and other unmentionables thicken the air.

Such is the pressure to expel offending words, my son must do more than speak them: he must type them, scrawl them, and even print them out on our label-maker.

We are cool with this.

Tics are neurological. Time-outs, scolding, and other intuitive interventions not only don’t work, they actually exacerbate tics. To decriminalize forbidden words is to diminish their frequency.

So, Tyoma can sing a thousand foul verses and print innumerable rude remarks. We blithely ignore him.

Some tics are easier to disregard than others. For example, I cannot bear touching tics. On long rainy afternoons I find myself entertaining a child compelled to touch me a hundred times an hour.  Last year, he hinked my boozle, this year he’s punching me.

Little Punchies

I don’t mean painful, aggressive punches, I mean soft little fist taps, 10,000 times a day. We call them “little punchies.”

As accepting as I am to Tyoma’s neurology, I struggle with this particular tic. Unexpected touch sets off a four alarm fire in my head. I jerk, jolt, and avert my own impulses to misbehave. This involuntary dramatic, negative response ensured a plethora of future little punchies. We were stuck in a loop.

Self-pity was my first choice. Summer is inherently miserable for me, so resigning myself to punchies with a mournful sigh seemed the way to go. Within a few days, little punchie nightmares took over my sleeping world. Without a reprieve from insistent little fist taps, I woke frazzled and depressed to the core.

I needed to take action. I needed to find a way to de-criminalize punchies since ignoring them was not working.

The solution was so obvious; I can’t believe I didn’t think of it.

One day as I picked Tyoma up from swimming, our respite worker Danielle asked, “Have you ever considered getting him a punching bag?”

No, actually, I hadn’t. The elegance of this solution made me want to shout “D’oh!” to the heavens.

The next day, we picked up a mixed martial arts bop bag. The company who manufactures the bag could never appreciate the wonderful favor they did for us by emblazoning it with numbered strike zones. More attractive than my backside or torso, the target-styled numbers invited infinite little punchies (and some big punchies, too!).

Little Punchies

Our new bop bag accomplished two delightful things. First, it gave me control over the little punchies, so I did not spend my afternoons engulfed in adrenal hyper-vigilance.  Second, it gave Tyoma an outlet for his prodigious energy.   Any suggested number sequence redirected volleys of dopamine-fueled punchies to “Bopping Billy.” Hooray!

As I reflected on the success of Danielle’s suggestion, I recognized the existential issue of little punchies. Pointing my son to a punching bag is no different from me directing myself to a canvas or notebook. Our family experience of Asperger’s and Tourette’s includes such a superfluity of mental and physical energy that we must continually channel the excess or drown in the overflow. To master ourselves,  we must uncover new outlets, so energies blossom outward in useful, healthy ways.

Summer Break Projects with #Autism and #Tourettes

Summer Break

Summer break lurks. I am anxious in advance.

The unstructured days of summer challenge my son and me. We crave stimulation, yet our uneven executive skills leave us either aimless and bored or agitated and disturbed. Without advanced and detailed planning, summer will be miserable.

Over past school breaks and summers, I learned how to make time pass more agreeably.  I hope what brings us, a mother and child on the autism spectrum, brings you a full and happy summer.

stamps

Fun is Subjective

The key to a successful project is organization. No, I don’t mean being organized ahead of time (though it helps). The key is to let your little one organize! Do you remember when your child loved lining up toys? This is the exact same thing.  Fun is subjective. Smeary blobs of paint are yucky. Tidy rows of crayons are delightful.  Art can be chaotic but giving your child control over their supplies not only reduces anxiety, it is a fun activity itself.

Above, my son arranged his ink pads in a pleasing fashion. He similarly ordered his rubber stamps and ran off to get the label maker to identify the stations where the ink, stamps, and paper will be. His process took 45 minutes. On this day he only stamped for five minutes, but on others we spend hours stamping.

colors

Accommodate for Needs

Tyoma and I love colors and patterns. Potholder making is a favorite activity, but it has pitfalls. Looms require both a fleetness of fingers and a tedium tolerance that eludes most six-year-old boys. We tackle the loom together. To nix anxiety, we list Tyoma Jobs and Mama Jobs.

Clarifying who does what and when visually is essential to all our activities. T sorts the colors into piles, selects a pattern, hands me loops, and straightens each row I weave. I set up the loom and do the actual weaving.

This is an excellent activity for a young touretter. I wove while he hopped, chirped, and bounded. My hyperactive son shared in the process of making something and got the movement his body craves.

Anticipate and Redirect

Tie Dyed TWhen I told my mom that Tyoma and I made tie-dyed shirts, she gasped. When I told her we did it at the kitchen table instead of outdoors, she gasped even louder.  We used a delightful kit with dye squeeze bottles instead of buckets. Not only was the tie-dye easy, it was tidy!

Imaginative and impulsive brains may make art dazzling, but eight ounces of concentrated dye in a squeeze bottle is a terrible temptation.  As I shook up the pink dye, our kitty strolled by. I was seized by an almost irresistible urge to squirt her with dye. I resisted and put kitty away, covering visible carpet and furniture with blankets and plastic.

Anticipating potential catastrophes is easy because I think like my son. If you are not pre-wired with autism, imagine the biggest, most indelible mess and plan accordingly. Better yet, know what to do at the cusp of disaster: redirect.

Midway through our second shirt, Tyoma confessed to a compulsion to “make a fountain with the green dye.” I nodded, asked for the dye, and suggested he find a squishy ball. We set the ball on the table for “compulsive squishing.”

Sensory options like squeeze toys or something unexpected (such as making a green fountain in the sink) are great redirectors. Composure is essential as well. Emotion stokes compulsion fires and ignites meltdowns. Say, my son flipped over a jar of apple cider on the counter, I would serenely ask for towels and we clean up like it’s no big deal. Parental irritation and potential meltdown avoided.  It’s neurology, not personal!

Making Applesauce

Final Words

My son’s growing mind needs stimulation—but not too much!  Every successful activity is a discrete dose of the right stimulation at the right time. I enjoy our special projects but they exhaust me. I cut myself liberal slack–especially since I am on the autism spectrum. I don’t always have the abundant mental reserves to introduce new activities, so we tackle new projects once a week.

Whether or not you are on the spectrum, your child will still need structure, accommodations and something enjoyable in every project. I wish you luck as you embark on your summer vacation and would love to hear what activities are successful (and why!) in your household.

 

 

Entertaining Others With Your Aspie Gifts
Should I Indulge My Asperger Child?
Embrace Neurodiversity!
Excitability, Asperger’s and Tadpoles