The gorgeous SoCal sun shone its bright face on the day, so my husband and the two older boys drive to the local lagoon for some water sports with friends. Charlie’s therapy schedule today won’t allow me to join, so it’s just me and the two little guys.
We continue on our usual Sunday morning routine: church then playing at home. Charlie’s therapist shows up surprisingly on time, so we head off to church.
About 15 minutes into service, I receive a text from the nursery: “Come get Michael.” He doesn’t tolerate the nursery well, so this is expected. Not a big deal. I’m determined to have a great day.
After we arrive home, Charlie plays outside for a bit. He’s learning to play in our yard. Usually, he wanders about, never actually playing with anything, so the therapist and I coerce him into sliding down the slide and swinging for a whopping minute. This sounds ridiculous, but we worked hard to get here.
It’s a fabulous morning despite the minor church setback. I know the afternoon is going to bring great things. Charlie has a two-hour break before his next therapy session. We reserve the next session for eating out with the family, usually at a fast food place during off hours, to avoid stares of curious onlookers if he has a meltdown.
His therapist arrives in her brightly colored, bold patterned pants. She’s as eager as I am to get going. We decide to try a new store. This is a challenging feat for Charlie — exploring the unknown. Sensing my hesitation, the therapist assures me it will work out.
It begins so wonderfully. I actually feel a sense of relief. I’m out shopping at a new store with my son, and he’s functioning just fine. Usually, I’d be anxiously waiting for the ball to drop, but not today. Then it happens without warning.
I don’t know if it’s the skewed lighting, the plethora of colorful items, a smell that invades his nose, a stranger peering into his space, but this meltdown is of epic proportions. I still cry thinking about it.
My sweet baby boy is on the ground, out of control, screaming and banging his head on the cold, hard tile. The therapist pushes me aside and tells me to move out of the way. My heart jumps in my throat. No. I can’t leave him. He needs me, but I know he doesn’t really want or need me in that moment.
This realization sinks deep, piercing my anxious soul. There’s absolutely nothing I can do when this happens. It’s always a waiting game. I stand back and watch his therapist protect his head from crashing on the ground as tears well up inside.
Customers gasp as they walk by, looking at me, diminishing every good mothering deed I’ve ever accomplished. Snickering rings in my ears. The beats of my heart grow louder and louder. I want to pick up my baby and rescue him from this scary place he’s in, but it doesn’t work that way. He doesn’t work that way.
Touching him or moving him only makes things worse. It feels like an eternity; the seconds tick into minutes. Once he regains his composure, I’m worn thin and exhausted. Escape feels like my only option, but his therapist insists we check out and continue.
My eyes grow large as she explains the clinical reasoning behind us staying. Her words fade into oblivion. I quickly, painfully unload my few items onto the conveyor belt. Charlie sits as calmly as he can, acting as if nothing ever happened. I, on the other hand, feel ragged and insecure. Why did I go alone? I want my husband. He’s always so calm.
We pay without incident, just a few normal toddler protests, nothing unusual, until we pass the front. Again, I have no idea what sets him off, but Charlie returns to meltdown mode. This time we’re almost in a safe, clear space where I can cry and pretend I know how to comfort him. Then it hits me like a punch to the gut.
“Take him home already!” a crass, older woman yells directly at me. I can’t do this! Frozen and breathless, I dream of melting all over the floor in a heap of my own tears. I want to explain to her all about him, how we’re working on getting him to tolerate outings. I can’t though. I continue to the car and move on.
When we’re out in public, it looks like my son is a naughty child. He flails in the shopping cart, kicks, hits and head-butts. If strangers get too close to him, he tries to slap them in the face. This may sound like a joke, but it’s our reality. I’m always on guard for adoring strangers. If a new person says hi, he screams at them. He’s not a bad kid; he has autism, which makes living in this overwhelming world a challenge that we’re conquering together.
When we first started ABA therapy, he wouldn’t sit in the grocery cart for longer than a few minutes. Sometimes we couldn’t even make it into the store. I was limited to shopping only at Target and only if I walked the same route every time, never changing the routine, always buying popcorn first.
You wouldn’t believe the comments, looks and remarks I’ve battled. I’ve even had people laugh at his antics. I do my best to keep my head up and focus only on my kids, ignoring the daggers of others.
What they don’t know is that Charlie’s mind is different than yours and mine. He sees the world differently and processes everything in a different way. He can’t communicate these needs and feelings; his language is limited, so it’s all foreign to me. I do my best to anticipate his needs, always actively avoiding a meltdown.
He loves order, routine and rigidity. New places and new people overwhelm him. Often times, he lays on the ground silently, absorbing his strange new surroundings. He’s a sensory seeker, so he needs to move to feel his own body. I’ve heard it explained that his brain can’t feel his body, so he needs to move his limbs to know they exist. It all sounds so bizarre, but this is the new realm we reside in.
My sweet boy is not naughty; he’s struggling to find balance in this unpredictable world. Please don’t judge; move on about your day. We don’t need your detrimental input. We’re doing the best we know how.
Follow this journey on Crazy With a Side of Autism.