Hi, I'm Sara. When my son was two, he went into a fog called Autism. He is seven now, and my family is on a mission to bring him back. Together, we are Finding Jackson.

Archive for August, 2013


Jackson, age 2So Monday we had Jackson’s second psychological evaluation required at age 7 to…uh…make sure he still has Autism and how severe, I guess? After our first Psych evaluation when Jackson was 3, I was prepared for the worst…I flashed back 4 years:

“Untestable” the grouchy old man muttered as Jackson bounced around his small, stale, but professional-looking office, and I tried to make sense of why THIS little, unfamiliar man was the one who got to decide my son’s intelligence, identity, educational choices, and life’s path. Jackson, like a caged chicken asked to do meaningless circus tricks, utterly ignored the balding man’s monotone instructions, the 3 stacked blocks and the other 3 vainly waiting in a pile next to it. Jackson’s eyes and fingers flitted past the frustrated, gruff man to find something he could relate to, something to hide in, something less demanding to be absorbed by: doinking the shiny stapler up and down, grabbing for some flashy metal desk decor, crawling under the desk and behind the man, and poking his pudgy fingers at computer keys. As I scrambled to contain the miniature whirlwind, I knew we were both doomed…

This Monday was bound to be different. I had done my homework on THIS guy. This time I have a team…a group of moms, teachers, and professionals whom I could grill. “Anyone know Dr. Bill?” After a string of positive replies, I felt relieved. This guy understands, he knows what he’s doing. Autism doesn’t befuddle or scare him. And he’s coming to our house at 9am…

Less than 30 seconds after Dr. Bill walks through our door, Jackson enters the front room, not looking at him, but sizing him up all the same. Within minutes, he discovers that Dr. Bill speaks his love language: Jackson squeals a request for “tickles!” His utter disregard for personal space doesn’t deter the Dear Doctor, and since Jackson is engaged, Dr. Bill asks if he can just jump right into his evaluation. Jackson gleefully gazes at his nose from 3 inches away and flops his legs across Dr. Bill’s lap.

Pulling knowledge from a child with autism looks like charming snakes to me…guessing from the slightest sideways eye glance and body proximity if this is the right moment to see if Jackson will identify 3 body parts, or tell you his name. Jackson pretty much just echoes everything Dr. Bill asks, “What is your name?” “What is your name?” “How old are you?” “How old are you?” “Where’s your nose?” (Points to nose.) “Where’s your nose?” (Points to nose.) But he does it with a huge “I-am-saying-what-I-think-you-want-me to-only-because-I-think-I-like-you-and-I’d-like-to-be-friends” kind of smile.

All this was fine, relieving even. Then Dr. Bill says, “Ok. I need to make some notes, and then the next part is more questions for you as a parent, so I’m going to turn off the “Fun” Dr. Bill for now.” And he does, turning to make notes. I entice Jackson’s big sisters to play “chase and tickle” outside to keep Jackson and his brothers out of our hair so we can talk, less interrupted.

As Dr. Bill briefly reviews the previous notes from Jackson’s first evaluations at 3 years detailing family medical history, his initial regression and withdrawal, loss of speech, eye contact, play and social skills, I catch myself cringing again. Before launching into questions, Dr. Bill gently reminds me that these paper tests see only what they were made to see, numbers, data, and “real world” testable results, not actual intelligence or the value of the individual. What a nice man, that Dr. Bill.

Response sheet
He hands me a laminated yellow sheet with prompted answers printed on it in sections. I wonder how many mothers and fathers have held this sheet and the fate of their children in their hands. He warns me that we’ll go through a lot of questions, not to over think them, and to answer as accurately as I can. Many of them he’s already ascertained enough information from his brief encounter with Jackson to answer himself. I find myself breathing out a steady long breath before we plunge in.

Does Jackson respond when his name is called?
Does Jackson turn toward a familiar voice?
Does Jackson identify 10 objects?
…Does Jackson stop when told?
…Does Jackson understand what “No” means?

Dr. Bill seems impressed by my insightful answers and scribbles notes beside many.

…Does Jackson read 30 words?
…Does Jackson recognize 10 letters? Identify 20 sounds? Count to 10? 30? Count 10 objects?
…Does Jackson identify 100 objects?
…Complete self-care routines independently?

…on and on and on…I feel a gash in my emotional armor…This nice, smiling man sees. He notices. My responses falter. So many of these things he COULD say, COULD do or almost do…one time…for a week. A month. In preschool. Then they were lost. Gone with the next regression. Replaced by a string of his latest favorite movie lines. My responses start to sound the same now: “He could…before, but…not now.” “Not now.” “Not now.” “Not now.”

Dr. Bill gives a disclaimer before continuing. “These sections progress in difficulty and are written for a progressively higher developmental level.

…Does Jackson seek out playful interaction with other kids his age?
…Does Jackson say his last name? Address? Phone number?
…Does Jackson respond reasonably to transitions from one activity to another?
…Does Jackson respond appropriately to other people’s emotions?
…Does Jackson show awareness of dangerous situations?

My answers sound wooden and cold. I don’t mean them to be. Dr. Bill is still a nice man. It’s not his fault I have to answer, “No.” My bottom lip juts out slightly, and I stubbornly refuse to say “Never.” My external monitor tells me I am sighing way too much.

Dr. Bill glances up from his questions and kindly says, “That should be enough. If we get so many in a row, we do not have to continue the assessment. This should be plenty of information for them to see what they need to see.” He makes a funny, not unkind observation about his typical 24 year old son’s hygienic skills, and asks how many 7 year olds would ask for a tissue for their nose. I think I laugh and smile with a grimace.

We shake hands, and he is out the door before I realize he’s left his yellow cheat sheet behind full of answer prompts. The word “NEVER” bounces off the page and smacks me. I whap it back into place as I fling the paper onto the kitchen counter.

I wonder if I came off as rude or upset to that nice guy. I reach for my phone and call before I think of how silly it is to ask if he wants me to mail a laminated paper to his office, but I do it anyway. He thanks me and says, “It’s not worth a stamp. You keep it. You know what that would be perfect for? If you cut it up into smaller strips, it would make the perfect “flappers!” we both say at the same time with a laugh. Jack will love it. I thank Dr. Bill for being so understanding and hang up, considering the yellow paper on the counter before me.

“No Opportunity Given” rises up like a challenge, and with a half-crazed smile, I laughingly declare, “Let’s go deliver flowers to the teachers…all of us. It may not work, but let’s just try.” I envision myself and 5 kids pulling a wagon full of cheery yellow pansies and cards to each classroom, with Jack flapping happily down his school’s halls. Today WILL be a good Monday. I’ve got a boy who loves to laugh, likes to be with us, and can dance a mean “Big Fish, Little Fish, Cardboard Box.” I’m not gonna waste that on a million “what-could-have-been” thoughts. We are moving on together today…and tomorrow, too, if today doesn’t go as planned…


photoHow can a happy-go-lucky, hakuna-matata-loving, chill, tip-toe-running, cheesy-grinning, giggle bucket transform into a wailing, my-heart-is-being-wrenched-from-my-body screeching child? The mystery of what stimuli or combination of stimuli and sensitivities tips the balance in Jackson’s mind still eludes me, but I feel responsible somehow for dragging him into it today.

Shoving a double sit-stand stroller crammed with three boys like prisoners on Alcatraz, I sport my red cape and my I-am-wonder-woman-and-will-try-anything-once attitude. I walk fast so Jackson cannot step off and escape. A momentary pause to wave at our girls in the small town walking parade sends him ducking under the handlebar to yank a thick grassy stem off a resident’s front lawn…perfect for flapping. Maybe the frantic grab for a flapper should have been my first clue that Jackson was not as excited as the rest of the town about celebrating our heritage.

Weaving through bodies like Dale Earnhardt (driving an stretch SUV), I apologize brusquely when our stroller grazes a munching man’s heal. I concentrate on continuous forward movement now. The whole outing is endangered by a 45-second pause in momentum as we wait for the dance troop to pass. Agitated sounds errupt from Mt. Jackson, and with a jerk of my head, I yank a daughter from the procession. She’s already shot me a questioning look, based on the noises. We confer briefly, and I bark directions over my shoulder while I rudely push forward past the scurrying viewers. Must keep this vehicle moving.

Too late. Jackson’s eyes compress angry tears into rivers which careen down cherry-red cheeks. His upset squawking competes with the blaring speakers. We wheel wildly around corners, attempting to find emptier streets and a faster way home.

Stares follow us across the main street. His arm is raised now, harshly pointed finger demanding beans from the nearest familiar house, whose pantry was observed to hold a can which evidently had his name on it. The litany of upset fall-back words that express nothing meaningful, except emotion and a desire for comfort, tumble out smashed together like one new word invented in this moment just to let mama, brothers, and all of 6th Street know just how cruel the world is to my boy: “waffleourhousebobthebuilderpandashower-beeeeeans!!!”

The litany continues for 14 blocks. I am glancing over my shoulder for a local patrol car or random CPS van to sidle up to us and investigate the disturbance. I say calm, soothing nothing’s for the sake of the younger brothers…but mostly for my own. The inner sanctuary must remain for another few blocks, for another few frantic moments as I fumble the lock, mind already blocks ahead trying to grope for the key, the magic distraction, that will break through Jackson’s mysterious inner hurricane and hush the turmoil before my own sanctuary crumbles…I feel it shake and shift already as I force myself to rationalize who is the most likely to win the Nobel Peace Prize at our house today: “Which music? What song? Bob the Builder or Po the Panda? Swing or shower?”

Quickly now…walk faster…youngest brother’s sanctuary has tumbled down, and his wails join Jackson’s. Their dueling screams rise and swell reaching unbelievable heights, feeding the crescendo.

My blood pressure finally pushes past the calm roof, I choke as I try to answer the older, wiser little brother’s “Why, mommy? Why is Jack so upset? He wants his beans?” Ignoring my unintelligible failed attempt to answer, he acknowledges his own more reasonable one, “Oh, I know, Mommy; he doesn’t like the Festival.”

My own eyes turn traitor and let steamy tears escape. They race down to wipe out all peaceful facades. I open the door and point inside. “Go.” I choke out. Gathering the wailing toddler I quickly calculate a simple list of guaranteed solutions that will ease his wilting spirit: food and a nap.

While settling little brother into his high chair, I realize Jackson has taken his survival into his own hands, retreating to his own world to re-enact his favorite 30 seconds of a 1990’s, low-budget, self-care DVD…over and over: “Why do we take a shower?” (Shower turns on, muffled lines, scripted singing, shower turns off, splat, splat, splat) “Why do we need to use the potty?” (Flush, more unintelligible lines, splat, splat, splat…line, shower, line, toilet routine X10).

Normally I’d stop him. Help him not get stuck. Enforce ONE shower today, but I’m not. Today, I’m throwing good-parent-ology out the window. Right now my boy needs to retreat, withdraw, leave this cruel, heartless, upsetting, demanding world and take ten showers. He’s rebuilding his sanctuary. I sigh, turn my back on the bathroom door and the frustrating mysteries, the what-could-I-have-done-differently’s. I’ve got ten 30-second scripts to get myself together, I’d best get on with rebuilding my sanctuary too.

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