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.




Author Archive

Nov
27
15

IMG_5537“Onomatopoeia! Onomatopoeia” Sam sing-songs excitedly, and Jackson giggles hysterically while holding Sam’s mouth close to his ear so he can take in every syllable of his current favorite word. The 7-year-old, younger brother briefly runs into the kitchen to earnestly ask, “Mom, do you think if I keep saying the things Jack likes to hear, he’ll know that I want to take care of him, and he’ll always want to stay close to me?” Continue Reading

Aug
22
13

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…

Aug
09
13

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.

Jul
05
13

FlagWell…we lasted an hour at the Independence Day Gala at a friend’s house. Now 2 boys and I are contemplating Independence Day and Fireman Sam instead of fireworks, friends, and patriotic recitations. That hour was frightfully frantic: Pulling Jackson away from our friend’s pantry freshly stocked with a Costco-sized package of Jack’s beloved beans; looking up in horror from my rummaging for a swim suit as his stark naked body streaks toward a pool of screaming kids; driving home to find his swim suit and some allergy medicine to pre-emtively avoid the last visit’s fiasco of red eyes and wails; guarding the non-GF crackers and cookies from a determined boy who had already successfully tasted both kinds of the forbidden fruit. I was done. Treasured holiday or not, my allegiance to this celebration was squashed.

On the way home, images of my own fondly remembered Fourth of July celebrations as a kid tauntingly trailed through my mind: parades, fireworks, picnics, patriotic songs, friends, games, family. I admit, I shed a tear or two out of self-pity. And here’s an ugly truth, but I found myself wishing on this Independence Day that our dear seven-year old boy could be at least as independent as his four-year old brother, Sam. Wishing I could have a conversation that lasted longer than 30 seconds. Wishing I could casually smile and nod as the other parents do, glancing confidently at my little ones playing contentedly, not running about like a caged wildcat bouncing from pool, to plate, to forbidden fruit and out the gate. But that’s enough self-pity for this Fourth of July party.

The ridiculousness of my whining hit me in the face like a wet rag. Tonight’s celebration would include a ceremony to remind our precious rug-rats what all this party-fare is about: the birth of our country, the price of freedom, and the great privilege we have to wear that freedom properly as citizens of the United States of America. If not for the 56 brave signers who risked their property, fortune, families, and lives to become known traitors to England and founders of this great country, we would not enjoy freedoms so enormous, that we rarely give them a second thought. How utterly selfish of me to pout about childhood traditions when thousands of courageous men and woman have given everything to protect and preserve that sweet independence.

I love this God-breathed country where my son’s life is counted as precious, his education is considered worth pursuing, and his identity is considered a privilege to protect as well as celebrate. This great country holds dear an earnest pursuit of life, liberty, and happiness for all Americans no matter their qualifications, country of origin, socio-economic status, or IQ. This great country, though not perfect, counts my son’s happiness, freedom, and independence worth pursuing as well as protecting. And so do I. So on this Independence day, I thank God and brave patriots for permitting me to pursue Jackson’s total freedom to be all that God has breathed in him to be, and to know Heaven-come-to-Earth kind of freedom that blows all other freedoms out of the water. I am so thankful to celebrate this Independence Day with my blown-to-Kingdom-Come new perspective, my precious Jackson, my gracious God…and Fireman Sam.

Jun
07
13

Jack on the run againI’ve been avoiding writing this for over a month, because it is about one of my most paralyzing fears: Losing Jackson. Just the other day, I forced myself to close the computer after catching the headline about the boy with autism whose body was found on the beach. I cannot fathom, and I do not wish to imagine.

Imagination is not required since my boy is set on breaking out and running again. He has been perfectly content to flap around the yard and beat a muddy path through the middle of the grass by pushing his little brother’s ride-on truck back and forth, but the blissful enjoyment (for him and me) can’t last forever, I guess. He peers through the fence, and sees…what? The neighbors’ playhouse? Their open back door? A low, free-swinging gate? A longing grows day after day until finally, he HAS to get out. HAS to run. He sneaks behind the shed, kicks out a board, and is gone.

Those seconds of panic when I realize he’s kicked out a board and escaped through the privacy fence into the neighbors’ yard, and I can’t fit through…I rush to the street looking four ways at the corner and only seeing a man walking his dog a few blocks down. Maybe he ducked into the neighbors’ house to explore?

As I careen around the corner to barge through their front door and hopefully retrieve my escapee, a lady a few houses down the busy street steps out of her car and asks, “You looking for a little boy, red shorts?” “YES!” “Way past that man walking his dog.” What?!? The tiny figure four eternally long blocks down? How the heck did he get so far so fast? I’m already shouting “Jack!” and clomping down the sidewalk in horrible garden shoes wishing I had my running shoes on, and wondering if he’s suddenly turned into Dash from the Incredibles, and if he’ll stay on the side walk or jump out to greet a passing car, and if he’ll look before he crosses that next intersection….After shouting “Jack, stop!” repeatedly, I realize that the red shorts are actually running back toward me. I don’t slow until he’s firmly in my arms.

“Why–? Where–? What–? You can’t just run off by yourself! That’s not safe!” Stop. Slow down. Choose your words. “What do you want?” (Wait…) “Go to Miss Janae’s house.” He was heading back to our old house, but he knows it’s not “home” anymore. It’s our dear friend’s home and the place where his favorite flapping trees live. My voice cracks as I try to speak slowly and calmly, “I–Mama can drive to Miss Janae’s house. No running to Miss Janae’s house. That’s not safe! You have to stop and get your grown up.”

So we slog back to the house in our horrible running shoes, me babbling and crying, searching for the right words, wondering how to explain, how to prevent, how to protect. Jack, hand in mine, not fighting, somehow resigned that his solo adventure is over.

So now here I am researching identification bracelets, tracking devices, fences, monitoring systems, door and window alarms, wondering why I have waited this long. Wondering how many times my son has been deterred, caught, or distracted from an escape that may not have turned out this way. I wonder if little ones like him are assigned specially trained guardian angels. I ought to request one while I’m ordering.



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