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When Words Finally Come

Jack drummingWe’ve been on this journey for quite some time now. Our boy Jackson is a big 9-year-old now, and life hasn’t slowed down yet. So this is a major catch-up post. Two years ago, we were still hoping for one word requests for tickles and waffles. Last summer we made great strides with 3 simple home goals that replaced sending him to Summer School: independently buckling his seat belt, riding a bike with training wheels, and treating everything as communication (including meltdowns and echolalia).

We had our first conversation via echolalia that went something like this:
Jack: Cars 2 or Lion King 1 & 1/2? (This is his prompt for me. He looks sideways, waiting for me to ask him.)
Me: Which one do you like better? Cars 2 or Lion King 1 & 1/2?
Jack: Cars 2
Me: I like Cars 2 better too.
Jack: Cars 2. Coming soon to theaters.
Me: Do you remember when we watched Cars 2 in the theater on the big screen?
Jack: (Huge smile.)
Me: That was really fun.
Jack: Lion King 1 & 1/2. Coming soon to theaters?
Me: Oh, man. I wish Lion King 1 & 1/2 was coming to theaters, but that’s an old movie. It’s not in the theaters anymore.
Jack: (sadly) Lion King 1 & 1/2 now available on Disney DVD and video.
Me: Yep. It’s only on DVD and video.

Decoding these cryptic conversations requires tons of filling in the blank, wild guessing, and studying what grabs his attention, but those scripted lines became our starting point for more conversations that also included independent speech. Like I said, it wasn’t one single method, it didn’t happen overnight, and we still have so far to go, but here are a few of the strategies that just seem to work for us:

1. I found a testimony of hope to squash the myth that Jackson had missed his golden window of opportunity for meaningful speech. The impetus to press through these hollow echoes of his favorite movie trailers and hope that we could connect in some meaningful way, the conviction that he was truly capable of more than just felt need requests and stimmy language, came from another parent of a child on the spectrum. One of the moms in our parent support group shared about her now 14-year-old daughter who didn’t begin talking until 3rd grade. The intense relief I felt after she shared this made me realize the unintentional pressure and discouragement I had placed on myself thinking that if Jack wasn’t speaking by the time he turned five, he wouldn’t. Ever. Thank God for plasticity and regeneration, and the ability to learn something new! I felt hope explode again. It had been too long since the last explosion. I used to hunt down testimonials of success, but I hadn’t done it in a long time. Besides, hearing it from a real live person who lives in my town was 99.9% more powerful than reading it online. Go find a parent support group, or start one. Ours has never been big, but it has meant a lot to the 3-6 people who come.

2. I started treating everything as communication. Last summer, after some previous bad experiences with our busing system as well as summer school, we opted out of ESY (Extended School Year) during the summer months. We chose to do schooling at home, but I really didn’t think bringing home a bunch of worksheets from school was the answer. So after choosing the three very practical goals I mentioned earlier, treating everything as communication became an all-day challenge (Echolalia, tantrums, sounds, flapping, the whole bit). First listen. Then decode. Then respond. Give him words to match his actions. Expand on his echoes. After Jackson flops on the ground and fusses, “I see you don’t want to brush your teeth. You can ask for one more minute.” When Jackson’s echoing, “Cars 2” over and over again, “Cars 2? That’s a great movie! I love how Mater gets rockets so he can fly!” Somehow I knew that all that echolalia was important, not a thing to be stopped, but practice for meaningful speech. His speech is often ten times clearer when he’s echoing in Finn McMissile’s British accent than when he’s asking for cookies (something he does every day). And in its own right, to Jackson, his echoed movie lines are incredibly meaningful. We’re exploring the depth of meaning in his echolalia now…but that’s for another post.

3. We ask Jackson to use “all his words.” Dude. That boy would be happy to only have to use one or two words to get what he wants or needs, but he can use more. It just takes a ton of effort to make his mouth say a full sentence. His amazing aide at school has been awesome at requesting “all of his words” consistently, and it inspired me to do the same. Now “Waffles” is magically transformed into, “Mommy, I want waffles please.” just by that simple prompt. And we thank and applaud him for going the extra mile every time because it requires so much concentration to get every word out.

4. Communication devices, PECS, and other visuals were all but replaced by a low-tech white board and marker. Last school year, his teacher started using an iPod with a communication app on it, and I think it helped Jackson see and hear the words exactly the same way for a while again, and to clearly see what was coming next and what his choices were. They still use a visual schedule and PECS to request food/break items at school, but I get the sense that Jackson is feeling too old for the visuals. He may still need them to remember his options, but he’s had them since preschool. Using the whiteboard was a strategy the inspiring parent I mentioned earlier had used and also Emily Colson in Dancing With Max. Now I’m a lousy artist, but the white board is super flexible. We can talk about everything under the sun and not have to fumble through app pages or the tiny square pictures that get lost in the couch and under the fridge. And we can draw the things he loves to talk about. Writing Disney movie titles is the current obsession, and he’s practicing fine motor control, spelling, and letters. Writing these titles repeatedly has been the majority of our summer school this year.

5. We became intentional about spending one-on-one time with Jackson. Again based on the testimony of friends, we were inspired to look at the Son Rise Program. This gentle, follow-his-lead kind of program which holds personal connection above academic performance just feels…right. So six mornings a week, Jason or I join him upstairs to give foot messages, write movie titles, draw Mike and Sully, talk about all things Pixar, and make silly faces in the mirror. Joining him in his world and slowly, gently asking him to join ours. His smile, eye contact, and yes, some words tell us this time is well worth it…that and the fact that after two hours, he doesn’t want to leave that room.

There are many things that have happened these last two years, but the highlight has been telling my hubby, “You know you can’t call him ‘nonverbal’ anymore.” That and my own renewed hope. We could all use some of that, right?

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Psychological Evaluations Disturb My Psyche but Renew my Resolve

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…

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Rebuilding the Sanctuary

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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On the Run Again

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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We Were Made for Relationship

Jackson and NathanBlood gushed from my 18 month-old’s nose after he kissed the pavement outside in the backyard. While I tried my best to curb the tide and determine whether stitches were in order, Jackson stepped inside after me and did something I had never seen him do before: He stepped closer and leaned in to look at his wailing brother. A puzzled look flashed momentarily, then…what was that??? Concern? Maybe even COMPASSION? His bottom lip quivered before his eyes screwed shut tightly, and he burst into tears.

Unfortunately, but also fortunately, I’ve had several opportunities to see this reaction to his brother’s injuries lately. He is definitely showing concern when his baby brother gets hurt, even reaching out to touch him, to comfort him. For a kid who defines classic autism descriptors like, “Incapable of seeing another’s perspective,” or “Unable to feel empathy for another” this show of emotion on behalf of his brother’s pain is epic. This is the other awareness that has seemed to be lost on Jackson most of the time. In the past, he might have left the room, complained in annoyance at the loud crying, or even LOL-ed. If I am able to multitask, I usually try to vocalize and encourage empathy (take Jack’s hand and touch his brother, explain that his brother hurts, model, “Are you okay?” and hugs). I was beginning to think it was all for nothing, but we just had an “Eureka!” Moment I will cherish.

I’ve read so many “takes” on Autism, especially the adamant arguments for and against Autism being a blessing, just part of who a person is, or a disorder to be fought. I absolutely think Jackson is a tremendous blessing in our lives and will continue to be whether he remains as he is or is completely healed. Obviously I have a hard time accepting that Autism defines Jackson, that it is just a part of who he is, who God designed him to be. We saw him develop as a typical kid for the first two years of his life, and then he withdrew, lost language, and lost skills. That was hard to swallow…I saw Jackson…and then I couldn’t see him so well past that glassy-eyed stare that preferred the tree tops outside our window to his mommy’s face.

I think it was the loss of relationship, the ability to connect, to know his mind, to really know him that hurt the most. I believe we were designed for relationship, so anything that attacks relational abilities seems to be an attack on Jackson’s design, and not what God intended for him or for our family.

It’s true, Jackson is primarily a happy little guy, and for this I am constantly thankful, but there are too many times when the words he wants desert him, inflicting huge frustration and isolation. The joy of being with friends and family is overshadowed by the overwhelming stimuli or too many peers invading his space. His inability to control emotions, transition, or let go of obsessions many times cannot be overcome with hugs, games, and cuddles. In these daily occurences, Jackson’s autism is anything BUT a blessing.

Yeah, yeah, I know the longer we go, the harder it is to know…what is his autism, and what is Jackson? Are they so entangled? Are they one and the same? I know his Autism has shaped him as well as us, no question. He’s a fierce overcomer, and so are we. We fight to know more, to see more little pieces of our boy. Jackson is emerging s-l-o-w-l-y, but still, he’s making a comeback. Discovering each new tiny piece is truly like, “Oh yeah! There you are! Welcome back, Buddy!” I love those moments. I live for those moments.

So this recent show of compassion is one of those pieces that seems so small, but in my eyes is a huge advancement in Jackson’s cognitive, social, and spiritual growth and our connection with him. To empathize. To see pain in someone else. To be touched by how someone else feels and respond appropriately. So now when lips meet pavement, I have two boys to console, but I am SOI (Smiling On the Inside).