The gorgeous Southern California 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 and 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,” the message reads. He does not tolerate the nursery well, so this is expected—not a big deal. I am determined to have a great day, and the morning is shaping this wonderful day I’ve envisioned.
After we arrive home from church, 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 going down the slide and swinging for an entire minute. This sounds ridiculous, but we worked hard to get here.
It is a fabulous morning despite the minor church setback with Michael. 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, so as to avoid the stares of curious on lookers 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. Exploring the unknown is a challenging feat for Charlie. Sensing my hesitation, his therapist assures me that it will work out.
It begins so wonderfully that I actually feel a sense of relief. I’m out shopping at a new store with my son, and he is 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 is the skewed lighting, the plethora of colorful items, a smell that invades his nose or 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 into 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 and pierces my anxious soul. There is 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 of me. Customers gasp as they walk by, looking at me, diminishing every good mothering deed I have 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 from the event that has just unfolded. Escape feels like my only option, but his therapist insists that 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 so insecure. Why did I go alone? I want my husband. He is 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 are almost in a safe, clear space where I can cry and pretend I know how to comfort him without prying eyes. Then something 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! I think to myself. Frozen and breathless, I dream of melting all over the floor into a heap of my own tears. I want to explain to her all about his condition, how I’m a prisoner in my own home, and this is my ticket to freedom, working on getting him to tolerate these outings. I can’t though. I continue to the car and move on.
When we are 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 am always on guard for adoring strangers who try to get too close. If a stranger says hi, he screams at them. He is not a bad kid; he has autism, which makes living in this overwhelming world a challenge that we are conquering together.
When we first started applied behavior analysis, or 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. The most painful experience was when some tee-ball mom acquaintances of mine were commenting about one of his epic meltdowns. It was so painful because they know about his autism, but 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 as 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 lies on the ground silently, absorbing his strange new surroundings. He also has sensory issues. He’s a sensory seeker, so often times 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 realm we reside it.
My sweet boy is not naughty; he is struggling to find balance in this unpredictable world. Please don’t judge him or me. Move on about your day. We don’t need your detrimental input. We are doing the best we know how.
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