Sharks, shoals, and unknown dangers await the Planet Spectrum travelers as they splash down into 2012.
The Planet Spectrum band of aliens has moved 950 miles North and has had six months to catch our breath. Aspies hate change. This makes everyone around Aspies dread change. Sterling and family will re-enter the atmosphere in early 2012. Tell everybody.
Muffled, bumpy crash landing on Planet Spectrum
Our arrival on Planet Spectrum had the eerie feel of a drawn-out crash landing in a spaceship surrounded by cotton and fog. Vague, scary shapes would appear and retreat, unfamiliar sounds and language came over the speakers, and friends, family, and teachers started looking at us differently.
Sterling and I had been home together since he was born. Literally. He was born at home during a full moon in August of 1997, two weeks after my thirty-fifth birthday. No drugs at all were used during the calm eight-hour labor and delivery. He smiled when he was one hour old. I had the luxury of staying home and being a mom while my partner worked. We were delerious. There is no need to detail the truly awesome experience of living with your new person. If you are reading this, you have had a little miracle or your mom has told you about how it felt to meet you for the first time. There is a popular quote, stunning in its simplicity and utter truth.
“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” ~Elizabeth Stone
Sterling was my first, so I had no base of comparison regarding development and behavior. I had read and memorized the “What to Expect” books, so I was pretty sure we had a basically healthy little mammal in our nest. No red flags waved over the pathway leading to the travels ahead.
I wish my Captain’s Log would have contained more detailed entries so I could go back and look at the past through my groovy Spectrum goggles. I was much too busy growing, steaming, and hand-milling baby food and watching “baby TV” (this consists of staring at the little miracle for hour after hour, marvelling about them breathing, wiggling, filling diapers, waving slobbery toys in the air.) Maybe I would have seen enough of a pattern to seek earlier intervention. Maybe some other smarter, more well-informed parent could have spotted something. These thoughts used to run around in my mind like a hamster in a wildly spinning exercise wheel as I lay in bed. Now that I live on PS full-time, I have let go of the useless review of should-haves.
I shall now whip out my super-duper, fog-clearing, past-decoding, Planet Spectrum goggles and check the red flags I can remember. From potty training, Sterling had a “letting go” issue. Nothing solid was allowed to leave his body. This resulted in some pretty serious bathroom scenes, in public and at home, that included 
screaming, thrashing, and utter meltdowns. Sterling’s play was very involved and detailed and we spent hours discussing and memorizing first dinosaurs, then trains, and the solar system. This is a common progression of interests for an American kid, but Sterling memorized, catalogued, and talked about everything related to the interest of the mon
th. He actually became Steve Irwin, the croc dude: The accent, the swagger, and “Crikey, there’s a naughty Sheila!”It became difficult to find the person named Sterling in there. We heard the constant wall of sound: lists of facts, repeated at length and to anyone within hearing range. Songs and bits of movie dialogue on an endless loop, a quiet, lisping narration of mysterious incantations. Of course, to me, it just meant that I was raising a genius (I still feel that way!)
When Sterling entered school, a friend who volunteered on a field trip noticed that he could not go down stairs foot-after-foot, and asked me if I was worried. (Who, me, worry?) We had noticed he chewed on everything, appropriate or not. Actually, chewing is kind of an understatement. He gnawed, mouthed, sucked on, and ingested a wide range of school supplies, toys, and clothing items including buttons. Huge dark patches of wetness were constant features of sleeves, shirt fronts, and jackets. Buttons lasted a week or two at best. Classmates were grossed out by the damp, limp spit-soaked wardrobe. After newsprint school paper and plastic of any kind, plants were especially delicious, so we trained him in botany. We had a gardener friend teach us about common local toxic plants. We ripped out a hedge full of oleander.
He leaned up against anything, people, desks, people, tables, people, and walls to know where his body was in space. We thought he was cute and snuggly until school started. Then it started to be “reported” to us that he couldn’t seem to find the torso tension needed to remain upright at his desk. Any nearby person, teacher, acquaintance or family member would find him draped across them like a boneless cat. His advanced vocabulary made adults interested in talking to him for a little while, until the so-called “little professor” act: the recitation of facts, endless details of whatever we were studying. Twitching, yawning, and interrupting by the listener were not noted as cues to bring it in for a landing, move along, or change the subject. In general, social cues like reading others’ facial expressions were absent.
The same parent who noticed the stair-climbing thing gave me a book about sensory integration disorder (which I did not even open). She had one kid with Aspberger’s and another with an attachment disorder, so I figured she wanted my kid to have a diagnosis, too. Then Sterling’s teacher suggested an Occupational Therapy evaluation. She noted that his attention wandered, and he seemed “out of his body” a lot. Although he was interested in telling adults all about Egypt, he was rarely on the same topic as others in any classroom conversation. I was certain that my genius was bored. How interesting can first grade be when you have memorized all the oceanography, literature, and baby level Chinese calligraphy on this semester’s curriculum? So what if he can’t tolerate echoes, look pushy people in the eye, or stand to have his hair brushed. The uninterruptible self talk at bedtime started seeming less sweet and cute and more uncontrollable. Oh yeah, and those screaming bathroom detonations were just stuff six-year-olds did, right? Right? Anybody?
Another parent at school recommended an Occupational Therapist with whom her daughter had worked. (Her daughter, I noted, really had something wrong.) In utter honesty, my only exposure to OT was in a nursing home helping “residents” with crafts, and in a hospital helping paralyzed people learn to cook. What can I say? He didn’t need to learn to be creative. What, were they going to do art and crafts? Things started to feel scary and I was walking in a strange, misty land where unfamiliar words and images would materialize then float away if I looked too closely. How could anything be wrong with such a smart kid? It was impossibly difficult to even make sense of the idea of the presence of a pathology, disease, condition, or syndrome associated with this heart of mine that was quirking along outside my body.
Aboard the USS Quirk, (just made that up this instant) there was trouble brewing. The chief pilot, Captain Mommy, was at odds with the chief co-pilot, Captain OP (Other Parent). Captain and co-captain were not flying the same course. OP was of the opinion that we had a discipline problem requiring behavior modification and stricter parenting by Captain Mommy. Captain Mommy, denial notwithstanding, was beginning to think there may be something to all this alien sounding nonsense. While the bridge crew was engaged in the Power Struggle and Debate Society event, no one was actually flying the ship. Yellow Alert! Impact on PS is imminent. The sensors are detecting anomalies ahead. 
Let me bring this report of our Journey to Planet Spectrum to a screeching halt for a moment. I know each family flies their own craft along their own route to PS. I acknowledge that our roadmap contains less bumps, signposts, and shipwrecks than so many other crews. I don’t wanna play symptom Roulette with other PS aliens, okay? The jostling around ASD, HF, PDD-NOS, NLD, SID, and the rest of the alphabetic distinctions are not my focus here. This is the tale of one crew: mine. In the eight years since Sally gave me that damned book, “The Out-of-Sync Child” by Carol Stock Kranowitz, we have gone our way as best we can. The actual crash landing on Planet Spectrum lasted about two years. Stay tuned for more from the flight deck of the USS Quirk, Captain Mommy commanding.
I am not at all funny today. In fact, I am hopping mad. Pretty sure my hair is on fire. I have been working really hard with Sterling on using the ASD framework and vocabulary to cope with life on Planet Spectrum. Over the last twelve months, I have been dribbling out information and suggestions based on the recommended techniques to reduce stress, limit meltdowns, and establish reasonably functional routines with my Alien.
In an effort to begin re-framing my parenting technique, redefining my relationship with my resident Alien, and adjusting to single parenting on Planet Spectrum, I started looking at behavior-as-symptoms with Sterling. He was old enough to have questions and the sophistication to understand that he was very different from other kids. I started with a brief salvo about eighteen months ago. One of our early conversations consisted of me trying to explain that his brain processes information differently from other people’s. This difference made some of his behaviors and thoughts raw and rough at times. Some tasks and interactions could be problematic. I was scrupulously careful to use neutral words like “difference” “challenge” “adaptations” “brain wiring.” I carefully picked my way through the maze of words. I kept this a short conversation, knowing that the TMI button is pretty sensitive around my Alien Child. He started to fidget around the three-minute mark, so I got to the point: We would work it out because we are so smart and creative. We were absolutely going to make school, home, and public as easy squeezy as possible. Paaause. (Cricket sound effect here) Click. The moment arrived. Sterling geared up his Big Voice and shouted,
“Mom, just stop talking! You are making me feel DISABLED!”
I internally collapsed. I made him feel disabled. Utter failure. Rallying, I managed to say “Nope, you are not disabled. It is your cool brain wiring that makes you so great at building those intricate Star Wars Legos, and makes you a Dragonology encyclopedia, and lets you memorize everything you hear in school. All the other stuff goes along with it, but we are gonna go with the good stuff, and deal with the rest.” But he was gone, looking away, lost to whatever internal movie was playing. I knew he had gone to Planet Spectrum Innerspace. I trudged up the stairs to my own room. I flopped face down on my crumpled, unmade bed and had a good, hard, snot-flying cry. A real wail-into-the-bed-pillows sob-a-thon.
Sterling and Xavier’s Other Parent and I had broken up a year before. The change was terribly stressful for all of us, but for Sterling, it “ruined his life” as he reminded me frequently. You know how change is difficult for our kids? This was cataclysmic. One of the largest issues that ended the marriage was the Other Parent’s technique of managing Sterling’s vocal and physical outbursts by tackle-style “takedowns,” punitive restriction of privileges, and trapping or blocking him in a small space to yell at him. OP (Other Parent) believed that Sterling was willful, stubborn, disobedient, and out of control. These adjectives may be descriptive of the behaviors that were present, but there was an over-arching condition at the base. ASD. Extensive psychological testing, a SPECT scan, psychotherapy, and OT had been used with Sterling. It was very well documented. Plainly there was pathology involved here. Since the break-up, it seemed that we were in the same book if not on the same page regarding Sterling’s ASD.
I have only been using words like Aspberger’s, NLD, Autism Spectrum, around the kids in the last few months. Allowing Sterling to read this blog has been liberating and instructive for both of us. 
I have boldly taken the ASD vocabulary into every IEP and school meetings. Since Sterling is HF, and looks like an adult, he is often perceived as stubborn and willful in the school setting, too. Public ignorance, prejudice, misunderstanding, and my own slow learning curve make me feel like I am walking slowly on coals most days, afraid of missteps, afraid to stop, afraid of going too fast.
Last week, the kids were on spring break. The OP took them to gold country in the Sierra foothills to a resort where we have stayed many times. The familiar resort, gold rush historical park, and nearby handmade candy store are favorites for the kids. When the kids travel with OP, I fret because I hate to be so far away from Sterling if when there is a detonation. The images of him being wrestled to the floor for shouting or disobeying a barked command make me worry when I am not in range for him to have an escape route. Nevertheless, the boys came back on Sunday, cheerful and chatty. Apparently the week went well, but Sterling stores experiences in memory folders that don’t cross-reference, unless specifically triggered. I don’t ever know what actually goes on with the OP unless Sterling calls me during the incident.
This morning, we made it through the Planet Spectrum Circus of Morning Routine (see prior posts) very nicely. I decided to brush the lion’s mane while he put his shoes on. I reminded him that he needs to hold still and tolerate the feeling of the brush on his scalp. Shoes on, he stood, got his backpack, moved towards the door and stopped to face me.
“OP says that the things you think are Aspberger’s traits aren’t really Aspberger’s traits. She disagrees with you on that stuff.”
FOOF! Can you hear the sound of my entire head of hair igniting? In one moment, my kid’s carefully constructed, non-judgemental, step-by-careful-step reframe gets sucker punched by a person who is supposed to be his protector and advocate. Dammit! My sensitive, painstaking progression of accommodation, behavior modifications, and self-esteem building efforts get a smackdown hard enough for him to remember and report. Thank the Fates that we had to rush off to middle school before I could open my mouth and breathe out the fire currently consuming my brain. I managed to remain quiet. Deadly quiet.
Hours later, my mind is still raging. I feel like OP is negating the validity of Sterlings diagnosis. Denying that our son exhibits behaviors secondary to processing differences. By reinserting the “stubborn, willful and disobedient” template, I feel he is being told that he is wrong and bad. That I am wrong. That his doctors, therapists, psychiatrist and teachers can’t be trusted. This is making me furious. I don’t give a big, fat #*@% what OP thinks, she did not need to open her mouth to a kid who is trying, really trying, to be okay.
I’m stuck right here, thinking that if I let this slide and just keep moving, it will go away. Hot coals. If I try to contradict OP, I will confuse him. Kids of divorced partents are harmed by contradictory parental messages. Hot coals. If I stop and do nothing, I will turn to cinders. Hot coals. If I run in circles screaming, I will fan the flames. I will try problem solving later, after I get my hair put out. Hand me the fire extinguisher.
Me. Today. Hair on fire and not amused.
It is another school morning on Planet Spectrum and the PS three-ring circus is still in full swing! In the last post, we had our Big Top opener: The death-defying “Waking the Sleeping Bear” Act. No mammals were harmed in the performance of Act One, although a Nerf gun was deployed early on. As you will remember, we got Sterling conscious, upright, completely dressed and down the stairs. Sterling has complained that I am a micromanager, but I prefer to think of myself as a ringmistress, providing helpful, directed prompts that propel us towards the ultimate goal of a timely launch towards middle school.
Today, we will break out the whip and chair for Act Two: “Feeding and Grooming the Recalcitrant Aspie.” Sterling requires a moderate level of background stimulation to bring his brain up to functioning level, so the Act Two soundtrack of Sterling and Xavier’s favorite music is thrumming in the background. No tootling flutes, flatulent tubas or chiming glockenspiels for this circus! Our Pandora© custom radio station plays Eagles, Queen, Elton John, Billy Joel and ZZ Top. (I have told the boys that they would make perfect men for 1979. Too bad it is 32 years later.)
Sterling stands at the foot of the stairs, leaning towards the music playing in the living room, drawn to the sounds, ready to belt out “Piano Man.” Before he can gather any momentum that may pull him off course, I gently prod my son towards the kitchen table, and begin the breakfast menu interview. He is still getting his focus and attention up to speed, so his responses are slow and contain long pauses.
“Okay, kid, what sounds great for breakfast this morning?”
“What sounds good for breakfast?”
I know lots of Spectrum kids will eat the same thing day after day, enjoying the dish each and every time. This is true for us right up until it stops, lasting anywhere from two to twelve days with no pattern. Most often, the lane change occurs after I have prepared the routine thing and have gotten ahead of schedule by having it on the table before the grand entrance. Several factors influence our culinary palette: Refined sugar makes him angry, cognitively disorganized, and undermines mood regulation and impulse control. (Sending a large, confused, angry, impulsive bear to middle school is frowned upon.) Citrus causes long-lasting oral lesions. Texture is much more important than taste, and the growing teenager factor sometimes requires a trough be used to serve adequate quantities. Wide-open choices do not work, so I offer a three item selection: 1) whatever he had yesterday 2) leftovers from last night’s dinner 3)instant rice. Odd, yes, But this beast from the PS menagerie likes something familiar, savory, or a bucket of carbs. I quickly deliver the preferred item along with a large glass of ice-cold water and a small pile of medication. He digs in and I sigh. Cue the music! Feeding scenario complete! I have lowered my expectations for breakfast table manners, but really, what wild-animal act includes napkins?
In preparation for the grooming phase about to commence, I recite the litany of tasks to be performed. “Okay, as soon as you are done eating, you need to bus your dishes, brush your hair and teeth, check your fingernails, and get your backpack ready. Got it?” Transitions are a challenge for us. Sterling is capable of doing all of the things necessary for getting ready to go. He even knows exactly what is to be done, and in what general order. The missing piece seems to be momentum. If he is not moving, it requires prompting to get him moving. After one task is complete, he sort of runs out of steam and needs a push, verbal or physical, in order to jumpstart his attention enough to get the next thing done.
This is where my finely honed ringmistress skills really shine. (Did I mention the whip and chair?) You see, I know if I push too hard, the boy will balk, turn into cranky cement, and refuse to budge. If I am too cheerful, he will be annoyed by the false ring of my voice and get angry at my insincerity, as he perceives it. Too loud or impatient, and he matches my energy, roaring back and posturing. Sometimes, I drop my voice to a whisper and the abrupt change grabs his full attention. Other times, I straighten my shoulders, rise to my impressive five feet three inches and peer up, way up, into the his brown eyes and hold us in stillness. This energetic respite, this small pause for a breath, can slide the show forward. I am the absolute queen of vocal inflection, having mastered the perfect blend of roar and purr, command and request, to get the act rolling.
For the longest time, I could not figure out why brushing hair and teeth was such dramatic and hated torture. I’m still not entirely certain, but, again, I think it has to do with transition coupled with sensory quirks. Brushing his full mane of chestnut hair requires holding the brush, reaching all around the head, applying pressure, and drawing the brush through a resistant matrix. This confusing bunch of input is often accompanied by the pain of tangles, so it lights up “overwhelm” alerts across the board. When performed in front of a mirror, aiming the brush is nearly impossible. The reversed image is hard to decode. Brushing teeth includes drippy water, adds toothpaste taste, (the “cooling” mint sensation feels just like burning coals to Sterling) and requires leaning over and spitting. As a bonus, we often have to brush under his fingernails, which are very healthy and fast-growing. Filtered through the screen of even high functioning ASD, all this brushing sounds like a sensory nightmare. Many resounding bathroom growling sessions have been featured as extra spectacular highlights in the big top! On the best days, we get the mane, fangs and claws shined and polished, and the center ring is once again the scene of triumph!
This is an accusation that flies my way often. Some time ago, Sterling’s Other Parent, with whom the kids stay one week per month, expressed this opinion about me in front of them. Since then, this fun new word is batted my way like a weaponized shuttlecock in the badminton-for-blood tournament between my ex-partner and I. Generally this triggers one of two reactions: Guilt or fury. About half the time, I immediately feel guilty, and am prepared to accept the judgement, concede the point, and slink away from the power struggle of the moment. The rest of the time, I get fired up and stoke the engine of resentment about my ex, single parenting, ASD, and how damned hard normal routine tasks are to manage with my son. Then I yell. Or cry.
In the next few posts, I am going to examine the difference between “micromanaging” and the cavalcade of “prompting” required in my corner of Planet Spectrum.
The cast: My splendidly disheveled self, Xavier (my NT 11 year-old), and, in the center ring, the star attraction, Sterling. We have a pretty well-rehearsed show in three acts. Act One-Get up and dressed, Act Two-get breakfast, and Act Three-get out the door.
I’ve heard from many families on Planet Spectrum that their little stars hop up, active and alert, ready to stim, quirk, and burble right out of the chute. Not in my world! Sterling requires a multi-step wake-up, consisting of multiple prompts of increasing volume and energy. Recently, Xavier has taken over the task, finding that shooting Sterling with a Nerf gun allows him to poke the sleeping bear while staying safely out of mauling range. Being the ringmistress, I direct the show from the kitchen, so all prompts in Act One are shouted towards the stairs in our narrow townhouse. When I hear the snuffles, grunts, yawns and groans emanating from the boy cave, I begin my well rehearsed patter.
“Sit up. Sterling, sit up. Now!” Minutes pass. “Stand up. Are you standing up?” Groaning sounds rumble down to me. “I need you dressed and downstairs in ten minutes.”
Many moms with NT pre-teen and teen morning zombies will recognize this routine. My son is not neurotypical. He dwells in the so-called high functioning corner of our planet. For us, this translates into solid resistance and difficulty moving from one task to another. Transitions from undressed to dressed, upstairs to downstairs, laxity to activity take effort, energy and prodding from outside. Like NT kids, he is physically capable of accomplishing all of the necessary tasks and behaviors in the morning scramble. Unlike NT kids, he is slogging through the sawdust in his own head space, impeded by all of the jumbled input and scrambled processing. As he is sits groggily on the edge of the bed, Sterling seems disassociated and floaty, almost out of range. If left alone, he stops completely, dreamily and blankly staring onto the air or randomly sorting through the detritus littering every flat surface within reach. Since I am not hearing any movement, knowing he needs a poke to come back to his body, I crack the whip.
“Five more minutes! Are you dressed?”
“No.”
Clean underwear?”
“In a minute”
“Now! What have you been doing?”
“Whut?”
“Are you standing up?”
“Whut?” (I will note here that his hearing is not impaired.)
“Put your clothes on! You have clean underwear, shirts, and pants on your shelves. Put your clothing on right now!”
I have arranged his clothing so he can see all of it. If Sterling cannot see something, it does not exist. After hundreds of dresser detonations, every garment flung about in the search of THE shirt, I stopped hiding the clothes. Short piles of plain shirts, solid-color sweatshirts, and cargo pants are arranged on low open shelves, stacked so the colors show. (For some Aspie reason, stripes, prints, and patterns are evil.) I figure short stacks are easier to reassemble when they are tossed about. This stroke of organizing brilliance on my part has cut down the length of Act One. Picking through ankle-deep drifts of cotton was time consuming. Minutes pass. I am hearing some rustling and a few thumping footsteps. I increase the volume, pitch and tempo of my prompts.
“Are you dressed?”
“Almost.”
“Walk down the stairs right now! Make sure you have clean socks on your feet.”
“Can I still come down if they’re not on my feet?” (Aspie literalism)
“Your job is to Get. Down. The. Stairs. Now.”
Thud, thud, clomp. Pause. Silence.
“Keep coming!”
“I got distracted.” (what the hell can be distracting about a stairwell, white walls, and a handrail?) Thud, thud, clomp.
“Hi Mom.” The flat voiced, neutral facial expression, and loose body lines show me that my sweet boy is neither upset nor agitated, just present and accounted for. As for me, it feels like this:
Hand me my top hat and whip! That was not micromanaging, that was show business. Stay tuned for Act Two!
I recently completed a research interview given to me by an educator who is working towards an advanced degree. Her focus is Autism Studies. In the last two posts, I’ve reprinted and commented on the first and second sections. Today, we will complete the set with the final round of questions in “The Lonely Planet Quiz Show.” When I read through these questions, I was struck by the realization that no one had ever asked me these particular questions, and I heard the tinkling echo of a penny-wish as it tumbled into the well of loneliness that is inside my head.
Here is the complete transcript of how I answered the questions about how I want the people of Neurotypical Land to deal with the Aliens from Planet Spectrum. These answers are necessarily short, due to the nature of the interview form, but these are my true responses. When I couldn’t resist editorializing or expanding, I added parenthetical remarks, usually snide ones.
My child is on the Autism Spectrum. It is a spectrum because a huge range of factors influence every facet of our lives. His needs, characteristics, and behaviors are inconsistent, baffling, frustrating and very real. Please understand he is not showing you disrespect by avoiding eye contact. Please do not try to force or coerce or chide or shame him into looking at you while you speak. Please understand that he needs to know why he is being asked to do things. He may need his “why” to be addressed often. Please believe me when I say he does not understand sarcasm, irony, or common mixed expressions like, “Get outta here!” “That really kills me”, “You have a hollow leg”, and a million other idiosyncratic English expressions.
He is very, very literal. If he has done two out of ten problems, do not say “You haven’t done a thing all class,” because to him this is a lie. (He will most likely stop everything until the “lie” is corrected or withdrawn, unable to move forward until it is settled.) He is not purposefully trying to “get your goat” “yank your chain” “pull your leg” or “blow smoke”.
Generally, good public manners are the guideline for how we like to be treated
My kid often looks and sounds very mature, grown-up and has a very sophisticated vocabulary. (By age 12, he was 5′ 6″ with baby-soft dark moustache and strapping build) Coupled with enormous quantities of specialized information that he can spout at length, he can appear to be a brilliant near-adult. Most strangers and acquaintances treat him as a normal, or Neurotypical (NT) kid. However, the truth that I am aware of every second of every outing is that suddenly, for no apparent reason to an outside person, he can decompensate into a loud, stubborn, upset, tearful or angry man-child. When he blasts off for Planet Spectrum, people react in various ways. Generally, folks stare for a moment then look quickly away. That is the best-case scenario. If we can’t get his orbit stabilized fairly quickly, folks can get irritable, cranky, or impatient.
Often, some adult with some type of real or perceived “authority’ strides in and tries to control the situation using posturing, voice, verbal directives, or other power techniques. This is a fatal mistake. (It assumes I am doing or not doing something that “should” be done.) It is essential to not touch, crowd, or yell at him during an activated time. He needs to be directed to a cooling off place, preferably one set up in advance where he can limit sensory input and get quiet and calm. He needs to be spoken to quietly and calmly. He must not be or feel trapped or cornered. (Attempting to herd us into a place where we will be less noticeable is a very bad idea. Herding is for sheep.)
We may occasionally ask a person in the area to refrain from doing something triggering, or for someplace quieter. (People smoking cigarettes or breaking rules like “Stay Off the Grass.” Places that echo have been known to instantly transit us from Mellow Yellow to Screaming Yellow Zonkers in a split second.).
If your student were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way?
This is a really super question! (This is the Million Dollar Bonus Round Triple Jackpot Question)
Kind tolerance is the very best response.
Being approached by strangers, no matter how well-meaning, can be disastrous for kids on the spectrum. As parents, we know our kids behave in unexpected and often awkward or socially odd ways. It is essential to not touch, crowd, or yell at him when this occurs. He needs to be directed to a cooling off place, preferably one set up in advance where he can limit sensory input and get quiet and calm. We may occasionally ask a person in the area to refrain from doing something triggering, or for someplace quieter. (I repeated this from the previous question because it is worth repeating. I may repeat it in every survey I ever do.)
If anything, I would be delighted if a stranger would chase away, I mean re-direct, anyone trying to “help” and let me manage. (Try this: “I’m sure she knows how best to handle this. Let’s give them some room, okay?” If they don’t respond, feel free to haul them away by the arm. It will save me from piercing them with my Icy Green Stare of Death.)
During one rather trying December grocery shopping trip, I actually had a man loom up into my then five-year-old son’s face and say loudly, “Do you expect Santa to visit a kid that acts like this?” This launched the mother of all Safeway meltdowns! (This particular launch into orbit ended with me leaving a week’s worth of groceries abandoned on aisle five and dragging a kicking and screaming child by the armpits into the sheeting rain. By that time, he was not the only one crying. Thank-you Mr. Helpful Bystander.) Of course, that was one isolated incident.
If my kid acts out, I need to be the one to handle it. It may appear that I am allowing or ignoring inappropriate behavior, but I do know that to attempt a powerful intervention could escalate the scenario. If anyone truly feels endangered, I insist they run away immediately. Save themselves, and let the expert, me, deal with my child. I promise I will yell for help when I actually need it.
“The Lonely Planet Quiz Show” was brought to you by the kind citizens of Planet Spectrum.
Again, I must thank the researcher for her graceful permission to use her questions. Being invited to take part in her study opened the door to more of my truth. Any humor or irony on my part is just my way of articulating my experience on Planet Spectrum. No disrespect is intended.
I recently filled out a parent interview form for an educator who is working on an advanced degree. Her focus is Autism Studies, and she wanted to get input from families on the spectrum. I was delighted to be asked. In my last post, “The Lonely Planet Quiz Show,” I expressed how lonely and isolated I felt, realizing no one had asked me these questions before. It seemed like a quiz show in a nightmare where my child’s future rested on each answer, or that I was answering as the Ambassador from Planet Spectrum, giving voice to the citizenry’s feelings and opinions. No pressure, really.
I will share the questions and my answers over the next few posts. After the first round of basic, if baffling, demographic questions, there was a set of questions about school. I call it ‘Middle School Hell for Tweens on the Spectrum.’ Several questions centered on my perception of the collaboration between school staff, the student, and myself. We have had an ongoing dialogue with our school district since Sterling was in the second grade. We have worked out an IEP and accommodations for the last five and a half years with up and down results. The responses below are just focused on the present-time situation at my son’s current school. I have reprinted my responses intact except for any identifying references to the school, teachers, staffers or other students.
My son is basically fully integrated in the school environment. He perceives that his math pull-out is not mainstreamed, bit I feel it is appropriate.
I collaborate through email, check-in meetings with the case manager, and RSP specialist. I am able to ask for a meeting at any time. Individual classroom teachers have varying levels of contact/availability. Teachers seem to have various responses to my son’s admittedly complex needs.
Several of my son’s teachers have taken the time to try to understand NLD, have looked at the report materials I have provided, and are willing to allow generous accommodations as outlined in our IEP.
I strongly feel that the tiny school district limits the resources available to my son. Realizing this is a political feature in our little pocket of the West Coast, I can only hope that some unification and streamlining can be workable in the future.
I would like to see better qualified aides rather than play yard volunteers that have been around long enough to have worked their way into classroom positions. I would like to see documentation of staff in-service training in Autism Spectrum Disorder characteristics and a clear checklist of strategies, things to try, and things to avoid (“Look me in the eye!”)
The most important improvement would be to have fully funded, well-equipped schools where we pay our educators a true salary that reflects their training and skills. A budget that allows for full ADA approved services and resources. A country where the publishing companies’ political stance does not drive the material in the curriculum.
That is the end of this section of the questions. Yes, I got on my soap box about school funding and classroom deficits. I had some concerns about these particular questions because the researcher is an educator who is currently working directly with my son. I was somewhat restrained. Our complete, tri-annual IEP meeting is next week, and we will all get down and dirty with the specifics of how my differently-abled son is to receive his public education. I did not see it s essential that I outline my entire opinion on the research interview.
Those few school related questions triggered a barrage of thoughts spinning around in my head, raising their hands and bouncing in their seats, “Pick me! Pick me!” I’m trying to find the answers, one at a time.
Sterling Walks Alone
I had a moment of acute, echoing, empty loneliness around midnight last night. It was like that moment of being in a spotlight, alone and unarmed as a maniacally grinning quiz show host asks the one question for which you did not prepare.
I was filling out a parent interview questionnaire given to me by Sterling’s case manager from his middle school. (Sterling is thirteen, and struggling through middle school. His current diagnosis is Non-verbal Learning Disorder (NLD). This is a flavor of Aspberger’s that mixes up an inconsistent, varied and confusing set of symptoms, processing challenges and behaviors. This particular diagnosis is commonly described as “high functioning” on the Autism Spectrum.)
This educator was doing research for an advanced degree, specializing in Autism Studies. I had been excited to be asked to participate, to give voice to our family.
Round One category:
“Simple Sounding Demographic Trick Questions”
Your Name: Deb
Age of Student: 13
Grade: 7
Categorical Description (e.g. AUT, SLD, pragmatic): Uh oh!
We had been through so much testing, so many evaluations, and gone through an alphabet soup of acronyms. I was completely stopped by this simple question. Breathe, Deb, it’s just a quick survey thingy. He will not be labeled for life by the letters you type here. Okay?
Categorical Description (e.g. AUT, SLD, pragmatic): NLD
School Placement (e.g., SDC, RSP): Uh, Um ? What the….? Damn, I’m going to wash out in Round One, no chance of the Caribbean Vacation, because I don’t know what these letters mean.)
I read my way through the rest of the interview, fervently hoping the questions would get more essay-ish. I’m good at essay questions. I started feeling overwhelmed and sad. In my first post, (Welcome to Planet Spectrum) I mentioned opening the over-stuffed hall closet door and having all the Planet Spectrum thoughts, fears, feelings and experiences tumble around my feet. I instantly closed the survey, and that pesky closet door, and found something else to do. Anything else to do. This contestant will not be advancing to Round Two today.
After a day or two, feeling time passing, I reopened the page and continued reading. Round Two category:
“Alien Integration into Public School.”
Crap! Now I have to try to quantify our experience in our tiny two-school district in a small town. I have to figure out how to reply honestly, yet in a constructive way that will enhance the researcher’s understanding of my perspective while not offending or insulting the system. “Can I try ‘Middle School Hell for Tweens on the Spectrum’ for $200, please?”
And the final round is coming up right after a word from our sponsors. Final Round Category:
“Your Personal Anecdotal Advice for the Rest of Us”
I was seriously appreciative of these deep questions. Not only were they essay-type (finally!), they were practical, personal, and very welcome. I noticed that no one had ever asked me these questions. That’s when the loneliness struck. I had never been asked how I would like people to respond when we had a pre-launch countdown. I had plenty of experience fighting with the Other Parent over how not to handle the different stages of the process. Plenty of classmate’s parents walking away after one play date, too. Attending meeting after meeting at the school explaining the difference between stubbornness and symptoms, dysgraphia and poor handwriting, lack of cooperation and inability to read group dynamics.
This was like someone was actually asking, “How can I help?” I felt the weight of the responsibility for giving a voice to my experience, knowing these words would be used to inform and instruct, even represent others on our planet. I noticed I was forming humorous, entertaining answers because that’s how I like to tell our stories. I was deeply alone, staring at the glaring lights, but ready to tackle this round. I wanted the cameras in studio to record for posterity a how-to on ‘Witnessing an Autism Meltdown in Public.’ I was ready for my close-up!
“I’ll take ‘Costco on a Saturday Afternoon’ for a thousand, Alex'”
In upcoming posts, I will share my actual answers to some of these questions, For today, the interview is sent and received, my contribution to the pool of Planet Autism experience recorded and aired for viewing at a later date. The spot lights are off, the studio audience dispersed. I don’t think I got the Grand Prize, but I did okay.
I sure hope they have some lovely parting gifts for me.
(My sincerest thanks to the researcher who so gracefully invited me to participate in this study, plus my fervent gratitude to her for allowing me to quote her interview questions in this post. Thank you for working to spread understanding of the ASD experience.)
Sterling walking alone.
Remember those first few times you left the baby at daycare, tiptoeing quietly away when they got interested in their friend, a toy, or were artfully diverted by a staffer? Or the wrenching guilt of closing the door on the red-faced wailing darling you were abandoning in the sitter’s strong embrace? We knew it was good to show our kids that when we left, we always came back. Always. Our NT kids eventually got this, and we saw them running away from us as soon as they hit the daycare door, or not even looking up from Teletubbies as we left for the meeting or (gasp) date night.
For my son with ASD, it seems like all the leavings and returnings, goodbyes and hellos, are unconnected in time, each one a new event. If he is engaged in something that holds his interest, he barely notices anything around him, much less my comings and goings. Until he notices that he can’t see me, that is. If he can’t see something, it does not exist. Therefore, if he can’t see me, I may have dropped off the planet, been abducted by aliens, or slipped into a different rift in the space-time continuum. On Planet Spectrum, these things all seem reasonable and possible. When it appears that I have left the biosphere, Sterling bellows my name, sounding like a baritone in a silo until I respond and he can come see me.
Today, I left the kids home alone. I do this occaisionally since they are eleven and thirteen, fully capable of running away from a burning building, applying pressure to major bleeding, or calling 911. These are the skills I consider criteria for being left alone for a few minutes. As I was leaving, I very clearly told them I would be gone for 45 minutes. I would be back at 2:30. I was going to the bank to make a deposit that would avert the sudden and dramatic collapse of my financial house of cards (a weeky event). My friend was coming with me and we were planning on 35 minutes or so of uninterrupted adult conversation.
When I got to the bank, I noticed that my cell phone was not in my pocket. No problem. My friend’s phone was available in case something urgent came up. After about 30 minutes, I felt antsy, repeatedly checking my pocket for the phone I knew was not there. Call it Planet Spectrum radar, because as we rolled up to the curb, my friend’s phone rang. It was Sterling, upset, demanding “Come home right now! Where are you? You have to come home now!” It took me about sixty seconds to vault into the house, knowing he would settle down if he could see me.
He had panicked when he saw my cell phone had been left behind. In the fifteen minutes between that discovery and my entrance, he had called his grandmother, a family friend 60 miles away, my brother on Long island, and my friend’s phone twice. When I got in the door, he told me he had panicked when he saw my phone had been left, and he was afraid I was never coming back, so he started calling around. Fortunately, all of the support people he had called were familiar with the process; they had neither called the police to report my disappearance nor CPS to report me for child abandonment.
This abandonment panic differs from NT abandonment anxiety. The lack of ability to draw a conclusion from prior experience is a feature of ASD that I keep expecting to disappear. I am not sure why. I keep thinking there is a certain number of repetitions of leave/return that will trip the switch, permanently ending the panic cycle. I haven’t found the rescource book with the algorithms for calculating how many times I have to reappear before he believes I will always reappear. It is probably in the same book with the algorithm for how to balance my check book or how much chocolate is enough.
For now, I’ll just keep coming back.
Welcome to Planet Spectrum!
I am thinking of you, the reader, as I would any friend or acquaintance whose life has been touched by Autism Spectrum Disorder (ASD). I want to open with a Facebook message I sent to my friend Karen who provided the final shove that prodded me into blogging. She asked me to read her new blog: solodialogue.wordpress.com. She was eager to hear my feedback since we both had kids on the spectrum. I could not bring myself to read any farther than the first paragraph of her first post. I couldn’t write a word to this brave, talented woman. Weeks went by, and I was embarrassed by my inability to give her even the smallest acknowledgement of her effort. I finally sat down to dash off a few words to just make myself feel less guilty. When a torrent of words flew out, tears poured down my face, and a version of the following message finally got sent.
“Dear Karen,
I think about you every day when I see your posts on my Facebook page. I imagine talking to you, sharing our experiences with our amazing sons. I promised to comment on your blog and did not, and wanted to briefly and candidly explain.
My journey with my son has been and continues to be a challenge that is fraught with worry over the thousands of decisions, mini to enormous, I’ve had to make as I parent both of my kids, one neurotypical (NT), one with an alphabet of diagnoses. I’m certain you understand the second-guessing, the wondering if a different response would have been better, the fear that they will take some harm into adulthood because of my unpreparedness to choose the “best” course of action. Although I know that moms of NT kids face the same worries, the weight of this responsibility can get crushing. Since the dissolution of my partnered relationship, I have been going it alone for 18 months. With each passing day, I wonder what I have let slip or go by unaddressed.
Opening the lid on telling the story of my travels in the land of Aspberger’s is like opening the hall closet in a house where a large family has lived for 15 years. Everything tumbles out in a bouncing, jumbled, sharp-cornered tangle and lies piled up to my knees, leaving me overwhelmed and rooted to the spot. My fear of opening that door has stopped me from even beginning a conversation with you.
I commend and wholeheartedly support the way you are seeking early intervention, grabbing support from everywhere you can, and sharing your experiences so generously, gracefully, and openly. You are doing the right stuff, taking the steps you can, talking your experience to a circle of loving hearts. Thank you for your example.”
I had planned on starting my own blog, and maybe now is the time to implement that dream. But today, my feet are immobilized by the pile of shoulds, what-ifs, remember that time, why did I say that, why didn’t I study harder or read more or, or, or….Choosing a place to start is even too much of a decision. If only I could shove everything back into the closet and take out one or two items at a time. Honestly, I’d much rather go make some French press coffee and retreat into Netflix reruns of “The X-Files.” What would Scully do?
As I face the scary pile of thoughts and feelings, facts and myths, I think I am reflecting the underbelly of the beast. That dark, helpless, fearful place that can trap and freeze. I recognize and witness this place for myself. Maybe by shining a light on this side of my ASD experience, the whole picture will become clearer. Maybe other parents are hurriedly walking past that door, head down and eyes averted, afraid to open it. There could be monsters mixed in with the broken umbrellas and pee-wee soccer shoes.
With this blog, Planet Spectrum, I am opening the door.
Sterling Walks Alone
planetspectrum 
