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.




Posts from ‘Processing Having a Child with Autism’

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…

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.

Apr
23
13

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).

Apr
14
13

peaceful anticipationI’ve been reminded again how much I need to journal as a processing tool as well as an invitation for God to speak. I never get started because I’m stuck on how little time I have for such a healthy endeavor. I just decided…if all I have time for is a single sentence per day. I guess that’s a start right? Here are my sentences from a few weeks ago:

Monday: I asked God to give you words that would stick around til tomorrow
Instead of fading away with the light of the sun. Continue Reading



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