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 in the nursery. 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 at home from church, Charlie plays outside for a bit. He’s learning to play in our yard. Usually, he wonders 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 is a fabulous morning despite the minor church set back 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, 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. This is a challenging feat, exploring the unknown, for Charlie. Sensing my hesitation, she assures me that 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 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, 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 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.
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 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 it hit 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 his condition, how I’m a prisoner in my own home, and this is my ticket to freedom, working on getting him to tolerate 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 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 t-ball mom acquaintances of mine were commenting about one of his epic meltdowns. It was so painful because they know about his Autism. 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 lays 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 new realm we reside in.
My sweet boy is not naughty; he is 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 are doing the best we know how.
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Please know that you are not alone! I know life can be painful:(
I have a 5 y.o ASD kiddo who is not easy. Let’s hope and work on them to get better. God bless your family
Thanks! You too! Life is getting easier, slowly but surely. Thanks for reading!
I have lived every detail of this day many, many times. Thank you so much for sharing and making me know I am not alone. Neither are you.
It always comforting to know this! Good luck with your sweet child, and thanks for reading. 🙂
This brings to my mind my 5 beautiful children who are premature, drug exposed,FASD, and autistic. The days of meltdowns, no family outings, all 5 had different sensory and overload reactions and none were pretty. The stares, the remarks about my beautiful child and myself. My heart hurts while I read this wishing I had known you or someone else besides a therapist to talk with who understood my pain for my children. Someone who gets it not someone who just listens and says”I Don’t know how you do it, God has a special place for you”. I cried while reading your blog remembering my feelings as you talked about yours. I get it, I’m you just somewhere else living the same daily life.I’M so glad I read your blog.
I am autistic. I understand the meltdowns and the routines because I went (and go) through it myself. I feel for Charlie. He is not alone in this. I will personally be available for him from the other side of the screen.
I’m crying Shelly, not through pity, but I know exactly what you are going through, because my son Connor is exactly the same. In fact I could have mistakin the discription as being for Connor. I cant get him diagnosed at autistic because he has sensory problems and learning difficulties too. Connor is 13 soon, in December. It is rare I take him shopping now, because, he may go into meltdown, and when he drops to the floor now, its getting more difficult to calm him, and keep him safe. You become almost immune to the stares and sniggering from some rude people. You do feel isolted, but, seeing the comments here, we are not alone in our struggle. Praise you Shelly, I wish you all the best
Thank you! I know about people in public they just stare. But i dont hold back with them and tell them about him and ASD. If they a rude then so am i. I know it dont make it right but sometime you just can’t hold back.
It’s good n reassuring I’m not alone that other mothers have experienced what I have so I totally know what Ur going through and uve helped me understand more about what’s going on with my 4 yr old that I didn’t know before I just wish his father understood it better but he just doesn’t want to hear it unless he’s hearing it the way he wants to hear it.
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