Making Up With Chaos

Truth is, I planned on writing about a different topic this week. But at this point, I’ve tried to drown my frazzled in about half a cup of Cherry Garcia and not quite managed to fully find, rescue, or resuscitate my tranquil…so I figured this was as good a week as any.

Even when I put up an entire picture, that’s just part of a moment on display, never even the full scene and certainly not the entire story. Roughly half of the year, I get up early enough to put on my make up before heading out with Tony to do his first community safety walk of the day. But this time of year, when the sun is set to boil and the concrete quickly sears, we head out quickly to start our walk during that short window of the early morning hours where the temperature is still in the 80’s, returning home often in the low 90’s.

Once we are home, I make him a protein and spinach smoothie and then we head up to my bedroom so that I can do my makeup while giving him his morning bath. The story that follows here is nothing new, though it may be new to you…many moments like this have been what is behind the reality of every success and every scene each of you has read about on these pages.

After Tony tells me on his AAC device that he needs help taking a bath, we wait at my door for him to ask to open it. Usually he picks the more blunt “move please,” and I have to prompt him to ask more politely. I might get a “no,” “I don’t like it,” or another “move please!” After I refuse to open the door until he asks in a manner generally deemed to be more respectful, eventually we get down to a more polite “Can we go this way?” or “I need help opening the door.” I have to keep it locked because otherwise he’d try to push past me and open it himself to skip the communication component.

Once in my room, he proceeds to run to our closet and pull out every clean blanket. Their fibers are gummed up like felt with the memory of every “stop,” “no,” “don’t do that,” and “leave those in the closet” that has ever spun out of my lips. Today, I couldn’t even get them folded between the attempts, and I made at least four trips back into my closet. Some mornings it is more.

As he walks towards the bathtub, he tries to grab a comb he shouldn’t have. I take it from his hands. He grabs a bottle of shampoo and puts it in his mouth. I pull it from his hands. He grabs another comb. I pull it from his mouth. He grabs Andy’s dandruff shampoo and puts the top of the bottle in his mouth. I take it from his mouth and hands. He grabs a water bottle, dumps the water in the tub, and puts it in his mouth. I take this, and he grabs a tooth brush…each of these actions is punctuated and separated by varied forms of unrequited “do not’s.”

This continues once the bath is underway, with him getting out of the tub to repeatedly grab items he’s been told he shouldn’t have. He gets back in the tub and I rub a primer on my skin. He gets out and grabs my phone. I pull it out of his hands. He gets back in the tub and I prep my eyes. He gets out of the tub and grabs one of my eye shadow palettes and puts it in his mouth. I pull it out of his mouth. He gets back in the tub and I get a transition shade on one crease. “No” has become our soundtrack, long forgotten are the more care-free moments of the early morning hours where I danced to “levitating” while brushing my teeth.

Instead I have made up with chaos and I am once again trying not to slip on the tile as we dance our way through an attempt to sparkle up my day and clean the sweat of the morning walk off of our son. Because usually the floor is pretty flooded by the time Tony’s done because he never tries to dry off before he jumps out of the bathtub to try and grab something he’s been told is off limits.

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This is just 40 minutes in the day of a family with a loved one who has Oppositional Defiant Disorder (ODD). For our little man, this is how he has been ever since he was about two. ODD is common in kiddos with ADHD, Autism, and Sotos Syndrome.

I have had more than one therapist ask over the years why I hadn’t had Tony officially diagnosed with that. “Doesn’t he have enough diagnoses?” I would say. Besides, the only accepted treatment for ODD is ABA, and he’s already getting that. And, then he will have people who will look at him and just automatically refuse to give him any sort of chance to see good in him. And people will look at me and automatically say he’s got to be this way because of something we as his parents did. Hopkins medicine still lists parenting techniques as a possible cause of ODD…and I find that particular theory so offensive and not rooted in the reality of what is going on with individuals with neurodevelopmental disabilities that we’re just going to have to leave it there for now.

Recently we asked Tony’s developmental pediatrician to make sure his medical records were documented in regards to the ODD symptoms for the sake of ensuring adequate documentation for ongoing medical necessity for ABA when it comes to his insurance benefits. Tony of necessity has been receiving therapy services since he was 15 months old, and he will undoubtedly need years more of that kind of support.

Making sure this was documented last month didn’t re-write what has already been, because this was there all along and everyone who has worked with our son has experienced these types of behaviors. If anything, I would hope it gives each of you a more complete picture of how hard everyone involved with our son has had to work for him to be where he currently is in terms of his skills. And perhaps it might give you the story behind why even my most enjoyed pursuits can’t ever be moments that are completely relaxed.