A few weeks ago, summer felt like fall. One sparkling afternoon Liev and I played with chalk in our pajamas. I drew long lines down our gritty asphalt drive while Liev marked off notches.
Every few minutes we took a break to wipe our hands on a damp washcloth. Neither one of us likes the dusty feel of chalk on our hands.
When our line reached 57 we became impatient to play our addition and subtraction game. We rolled a foamy die and hopped barefoot down the number line.
In between dice rolls, we enjoyed the pleasant day. Liev chatted and walked in circles, assigning meaning to various number positions on the line. I enjoyed a few open-armed spins when the neighbors weren’t about.
After twenty minutes of jumping and rulemaking we moved on to our next project–a giant bullseye. I fashioned lumpy concentric circles and T wrote the numbers. We colored rings together.
Liev decided to add a number platform (he’s drawing it here) for each player to throw stones from. He then proceeded to make up rules that would guarantee him the win.
We must have been a sight, talking to and at each other, making rules and walking around in circles.
Weeks before my son’s fourth birthday, we said goodbye to his pacifier. His souska* relieved anxiety and soothed him to sleep. His pacifier was a wonderful tool and improved the quality of everyone’s life. We were sad to see souska go, but Liev was developing a ghoulish open bite. Imagining a future of uncomfortable dental headgear, we decided to take the pacifier away.
When you take something away from a child with autism, a replacement will be found. Parents hope the replacement will be a wonderful, adaptive new behavior, but it usually isn’t. Autistic mental wiring means unusual problem solving. An individual’s needs will be met, often in unexpected ways.
My son substituted nose blowing for his beloved pacifier. He did not run around with a box of tissues, blasting away his stress. No, he had to blow his nose on me! On my arm, on my backside, on my tummy, and on any part he could mash his face against.
The nose blowing worsened when my mother in law came to visit. After a hard day in preschool, Liev would erupt in afternoon- long nose-blowing fits. I became a walking snot-rag. I didn’t dare wear black due to unsavory mucous smears around my bottom and bosom. I was exasperated. I understood why he sought me out—I am Mama. But nose blowing? Seriously? Ugh!
Utterly perplexed and disgusted by this behavior, I scoured the internet for advice. I bought and read books. I asked for help from his teachers. I tested sweet, sour, salty and crunchy treats. I tried fidgets to dissipate tension. Extra attention and affection did not lessen the behavior. Discipline and limit setting only aggravated the situation. Nothing stopped the behavior.
At last, I decided to ignore the behavior. What was the worst thing that would happen? Would he become an evil villain who planned world domination via snot? Nah. My choice did not diminish the nose-blowing, but ignoring the behavior helped me. I could focus on being calm instead of calculating what I should do next—an important thing for an Aspie.
Three months into the snot wars, I had an idea. I took a Panic Pete fidget and instructed Liev to blow his nose on “Snitty Pete” instead of me. I told him he would “really gross Pete out” and made “Ewwww!” sounds every time Liev used him. The hilarity appealed to Liev. Snitty Pete worked.
I wondered why I didn’t try something like this sooner. As I watched Liev crush Snitty Pete into his face, I had a realization. He was seeking a specific sensation to soothe himself. Snitty Pete had a squashy texture, not unlike my backside and tummy. This pressure on his nose and upper jaw provided him with the tension relief he desperately needed.
The nose-blowing didn’t go away that day, but it did get much better. Nowadays, we still have snotty interludes, particularly when Liev is ill or stressed, but I don’t freak out. It’s a secret code between the two of us, a distress signal. I know that my son needs a break and deep pressure soothing. We have a fine, albeit odd, understanding.
Last weekend, Egor and I enjoyed a few hour to ourselves. I parked my butt in front of my laptop to research Pre-Raphaelite and Symbolist paintings. Egor skulked off to dig around in the basement. Ten minutes later, I heard music. Egor had unearthed the harmonica.
I love harmonicas. They are the happiest, blingiest musical instruments ever invented. When I was a kid, my Grandmother played old country tunes on her harmonica. It was magic! How could anyone coax music out of a stubborn metal bar? I spent a childhood summer trying to teach myself. I could not figure it out.
So, when I heard my husband playing a song, a fiery joy bloomed in my heart. I hopped out of bed and clattered down the stairs, singing. In the kitchen, I did a tiny dance and fussed over the harmonica. It took ten minutes for the intense nostalgia and pleasure to subside enough for me to be calm.
I realized then that I had been celebrating the harmonica concert on tip toes. In fact, I toe walked non-stop as I enjoyed his playing. Huh. I never really thought about it before. Why do I do this? Well, it feels great. The combination of pressure and balance blends with the joy I feel.
And I do feel joy. Pure, mindless ecstasy. The sensation is so intense, it automatically triggers a physical reaction. This connection between mood and body certainly underlies the human desire to dance. Such a pity that this drive was installed in such a clumsy body.
Fortunately, my husband jovially puts up with my fits of rapture. He spent the rest of the day practicing harmonica, oddly playing “Twinkle, Twinkle Little Star” amidst blues riffs.
After the second hour, of “Twinkle,” I almost asked him to choose another song. But, he has his thing, and I have mine. For revenge, I planned to ambush him with a lecture on French Symbolist painters.
I decorated my room like the prom I never went to.
Ropes of glass, clay, and metal beads. Fuzzy yarn, silky ribbon, and glittery strings. So many sequins on surfaces! Metallic spray paint accents and ample fairy lights. A festive delight for the eyes and fingers. My sensory haven. My sanctuary to stare into, hypnotically, serenely, thoughtfully.
I’ve plumbed for treasures from the depths of dusty bargain bins and crowded close-out sales. A bagful of oversized fuchsia beads? Hurrah! Fauvist yarn portraits of young women? Bliss! I’ve scoured flea markets and secondhand stores to dig up primitive animal masks and amply sequined mid-century souvenir dolls. I live in a kindergartner’s overambitious glitter jar. And I am delighted!
Okay. Deep breath. I hope I can explain this well.
Observing my son, I have cataloged his quirks and oddities. In videos, photographs, and pages of text, I captured his essence. Suddenly, an astounding revelation occurred. I too, have pages of quirks and oddities to catalog and disclose.
It began with a link of characteristics of female Asperger’s traits. This list has been the single most awakening moment of my life. I was very anxious over my fit with the male traits, many of which I do have, but some differences threw me. It did not fit. That’s why I sought out help. My brand-new therapist told me that women present differently, but I had never thought to have checked.
So, I googled. And here it is. This chart is me. Perhaps, for accuracy’s sake, I might not fit a sentence of two, but here I am. Bless you, bless you, Rudy Simone.
I started reading the chart, saying, “Uh-huh uh huh uh huh,” again and again. And then, I reached the third column. Midway down it stated:
“stims to sooth self when sad or agitated: rocking face rubbing, humming, finger flicking, leg bouncing, finger or foot bouncing”
“Similarly, physical when happy. Hand flapping, clapping, singing, jumping, running dancing, bouncing around.”
OMG. Nothing I was so accurate.
People who know me socially might not see or notice. I pace, rock, and flick, snap, flap, and clap. Many have commented on my leg bouncing. “Spazz” was a school nickname and an accurate descriptor. I could never understand why people were not as jazzed about the things that made me happy. If I got an A+ on an exam, I’d whoop and rattle my paper and look for someone to celebrate with me. A classmate and former best friend who also did well would look away and tell me to “Calm down.”
Nowadays, I still burst into song and make odd sounds when I am happy. As I think about it, I don’t see others or even imagine others behaving this way. As a child, I continuously made odd sounds. I asked myself “why” for the first time today. I savor the feel of the pressure and vibration in my mouth. It is profoundly pleasing and soothing.
My husband has grown accustomed to my happy dances and hand-clapping frenzies, even when an outburst of joyous expression lasts for ten or twenty minutes–that’s twenty minutes of “Blue-DUDE-blue-DUDE-DUDE-blue-DUDE DUDE!!!” with a few raspberries and vigorous thigh-slapping. I am the only one I know who does this. And I do it all the time.
I can’t imagine any of our neighbors doing this, nor can I imagine them doing the finger dances I do when trying to organize my thoughts. At home and school, my leg wiggling, which can reach a startling amplitude, makes people flinch and stare.
At Southwest Counseling Center, my job was to help mental health consumers manage severe psychiatric illness. I did well, but I fit in better with the consumers than the regular staff. They valued me for my accurate notetaking and ability to detect patterns in people’s behavior.
Once I attended a treatment plan of a favorite client, Diana. Her therapist had a disagreeable aura about him. Imagine a stony-faced, musty 1970’s Sears catalog model with an attitude from a 1949 men’s magazine. His oblique criticism of Diana flustered her. He spewed the passive-aggressive observations too ill-tempered to be therapeutic. I became distressed. I did not want to be there.
My agitation escalated. Overwhelmed, I started rocking slightly, and then I flopped over on the conference table, smooshing and rubbing my cheek against the cool melamine. As if my splayed-out torso was not enough, my bouncing legs audibly rattled the table. At some point, I resumed protocol, and I sat bolt upright. My stillness was brief. I bounced vigorously in my chair for the rest of the meeting.
Both therapist and client ignored what must have been a bizarre display. Diana, however, softened her tirade as if she understood my distress. She agreed to whatever he said, and the meeting was over quickly. She never said a word about my “moment.” The therapist acted oblivious and aloof. I took a disliking to him that has never dissipated. I retired from SWCC six months later.
What happened at that meeting? I had no idea. I’ve scratched my head over this for years. Today, I know what happened. The overpowering emotions got to me. I liked the patient; I identified with her. I knew she was off-kilter but this therapist was not acknowledging her strengths, and I’d had quite enough of that in my life, thank you. Torn between outrage and duty, my emotions rebelled with movement. The social brakes that keep me from singing loudly at JC Penney failed, and I had a little meltdown.
I have experienced variations of this episode for years. Now I know it is neurological. What sweet, sweet relief! I can finally answer the question that buzzes my embarrassed brain: “Why am I like this?” I am like this because I am made this way. Others are like me too, and we are all worthy.