We were cross-eyed, dumbstruck tired – craving an evening of sinking into our outdated furniture and staring at our oversized tube t.v. watching a VHS. the goose worked full-time with a couple of add-on jobs and I took in littles for next to nothing to help families like us who couldn’t afford daycare.
Bellies were full on happy meals, the tub was draining a mocha-swirl of a day’s dirt mixed with soap, stories had been read to the Irish twins while big sister read about Easter Island, and it was time for mom and dad…just mom and dad.
There we were, all settled in for a still evening without a breath of wind or whining, when we were hit yet again with an F5 sensory storm spinning out of control from our two year-old.
The repetitive screaming, turned into coughing…even gagging at times had become a part of our daily routine. This child could take all of his two year-old half-pint lungs into a full-blown same sentence tornado, gain powerful momentum, and destroy morning routines and coveted still evenings. These meltdowns often dropped on us out of nowhere and could be heard for hours… some might say miles, until his vocal chords wore themselves out like a leftover breeze of a raging storm.
Nothing I did could calm our son in the middle of these “sensory storms.” If something had invaded his spacial comfort, his routine, his ability to process through his overactive senses, we would be left in the messy trail of twisted information reeking havoc on his sweet tender soul, and the comfortable we craved.
In infancy, we all noticed it…the way he stiffened up while being rocked or cradled, or when we tried to comfort him in what we thought may be his “fussy time” like most babies have at certain times of the day. The way he startled so easily, and how the restriction of a car seat made trips longer than 10 minutes unbearable. He was my third child, and so I thought I had this mom thing down, but Carter came all wrapped up in something so wild with color and vastly different from my girls, that I didn’t know how blind I had been. The vibrant threads woven into this one, would train my eye to see the glory of a Holy knitting, spinning, forming together a child stamped in an Image, and marked masterpiece. He was unique, and his uniqueness made me different...cuz I needed to be different, so God gave me Carter.
As Carter grew, we as parents grew with him. We grew in grace. The grace to understand he couldn’t adapt to certain situations and that home was his sanctuary. So one of us would often stay put with Carter while the other attended another child’s event or other social activities we were involved with. When Carter was old enough to match words to feelings, we understood that too much stimulation caused migraines, throwing up, and sleeping 12 hours long.
We came to understand that tags in shirts, tight sleeves or pants, tube socks, underwear and shoes all “felt funny” and so daily, I would assist in the changing of clothes, and trying different articles of clothing until we found the right one, sometimes over the course of two hours. Often, out of anger and time limitations, I forced him to wear what I had chosen, not fully understanding the hours of torture he would have to endure.
For one whole year we gave up on underwear all together.
Carter not only had sensory issues, he also seemed to crave non-food items and I would often find bites and whole chunks eaten off of my deodorant. Toothpaste tubes would be found in his room, the minty paste sucked half-clean out. I started checking my laundry detergent, because I had remembered reading about kids like these. Pica kids.
Though Carter was delayed in speech, he was advanced in motor skills. He walked at nine months, learned to ride a bike before his older sister, and was ambidextrous in swinging bats and clubs, and all the while the question kept creeping in, “does my child have autism?”
I didn’t know anything about spectrum disorders. I just knew my child was different. Friends and family suggested ADHD, medication, spankings, and letting him know who was in control over his behavior issues. Some were convinced he was naughty and manipulative, strong-willed.
I listened and spanked. He was still in diapers and I was told to spank him with a spoon on his leg so his diaper didn’t cushion it, as punishment for not taking a nap. Carter didn’t sleep well, he wandered at night, and gave up afternoon naps far earlier than my other two children. I was exhausted, and at my emotional end I spanked angry with that spoon…and then I cried. I cried hard. I cried mad. I cried shame…and the One who skillfully weaved my Carter together, in all of his melt-downs, in all of his behavioral issues, in all of his robbing my routine and comfort, said in a shiver-whisper, “no more.”
In an ocean of tears and shame I swooped up this
and in between heave-sobs said, “mama will never hurt you again…I promise.”
Grace wasn’t something we were instinctive to. No one is. It often comes with an angry fistful of prayer, a fizzled out joy, a sudden realization that as convinced as we are that we have a measure of control over our kids, when chaos wildly spins through your home, we finally crash in the dizziness of it…sick, and then crawl to the cross. We had to learn grace for Carter, we had to learn the cross. We had to study Jesus and let Him fill us with grace to be safe parents for our Carter. To reflect God’s image and rescue him when he needed rescuing, to protect him when he needed protecting, to hide him under our wing when he needed security and familiar, and so we became so we could watch our–boy-become.
When Carter went to kindergarten, his teacher wanted to get his hearing checked, she was convinced he couldn’t hear. She repeatedly would ask him to do things, or say his name, calling him to join the rest of the class, and get no response as he continued to play with the same familiar toy.
Since the time Carter could form three words together, he would get stuck on something. When he was little and wanted his blankie, “he would repeat over and over until his voice frayed itself into a whisper, “I want my dee-tee! I want my dee-tee!” The record kept skipping even after he had been given his blanket.
Does my child have autism?
Two- hour meltdowns were our normal. These were out of control, kick the wall to the rhythm of his skipping record sentence, “I (kick), want, (kick), my (kick), dee-tee! (kick-kick). His older sister learned to fall asleep to them if they happened at night.
Bright lights caused migraines. Loud noises, tantrums. We forced him to stay at a firework display one night out of selfishness and a desire for our child to be like every other child.
Carter often went off alone to play and line things up like matchbox cars, plastic action figures, potatoes…
Does my child have autism…?
It was hard for him to look you in the eye. He was painfully embarrassed over the simplest of things.
Learning to read was excruciating, trying to understand math was like awaiting death row.
He took everything literally and jokes often settled in think-clouds outlining a constant question mark above his head and left him wondering why everyone was laughing.
We took him to Nickelodeon Universe and had to ask the person controlling the ride we had unawaringly propped him on, to stop it. The terror in his eyes, from the sudden unexpected motion he was experiencing, frightened me. He hated it. We left early.
At ten years old we put a guitar in his hands and that very night he came down the stairs and effortlessly plucked out a song he had just listened to on the radio. Music became his safety, his past-time, his obsession.
Music was spun into him on that crazy spectrum! Music made sense. He couldn’t read notes, even though he took lessons, but there was an instinctual rhythmic composition in his soul, writing itself out in song.
Much of the time we had fought against that heavenly composing that graced our major falls with Carter and strengthened our minor lifts. Often we were too sharp, and stubbornly flat, unwilling to move with his rhythm, But God was writing our family song and the end result was sure to set us all free in a holy dance.
When Carter was 16 I finally took him to a specialist who diagnosed him with Severe Sensory Processing Disorder, though most people wouldn’t know it. She said he was brilliant because he had learned to adapt to his uncomfortable environment.
in 2011-2013, I had went back to school and finished my Bachelor’s in Marriage and Family Psychology. I learned about spectrum disorders. I learned that for high-functioning kids, diagnoses aren’t all that important, but what’s important is that you don’t try and reshape what God was spinning into motion with all the wild colors in the spectrum. That you learn the repetitive steps of their dance. That you sacrifice your normal and enter into an unfamiliar world of routine, repetition, familiarity, and embrace the intense joy you get with a spectrum kid.
Spectrum kids force you to slow down and enter in. Spectrum kids demand your attention. Spectrum kids make you parent.
If you parent them well, by looking to Christ and His Father’s heart, surrendering your agenda to the one who writes our days, it will stop being a battle of the wills and you will both win this side of heaven.
What about you? Share your comments, your pervasive questions that keep haunting you. Ask me more, because there is still so much to tell! Join the conversation!
I plan to add part 2 to this later in the week and share his food issues, touch issues, things I learned to do to maintain routine and peace.