Beauty Beyond the Data

I stood in the bathroom clicking the keys in my sons ABA data program and for a split second everything went blurry. I looked up in the big mirror in front of me and wondered what life not measured by data would look like. In ABA they teach us to define behaviors objectively. They tell us to throw out emotion and write down only what is observable and measurable so as not to skew any data or to create any false pretense regarding functions of behavior but then isn’t all behavior in some way facilitated, at least in part, by emotion?

I have not written much these past few months as our summer came to a close I decided to make a job move to another ABA company that would offer both a chance for me to grow in my current job role and to help me advance to a higher qualification which has proven to be both exciting and overwhelming. I have learned a lot more about the field of Applied Behavioral Analysis and its inner workings. I now have had the opportunity to get my feet wet working center based ABA which has proven to be my biggest challenge.

It seems between working in ABA, receiving ABA services for my son and studying for the Registered Behavior Technician (RBT) exam my life has been run by data. Trial this, DTT that, Maintenance, behavior momentum, reward boards, preference assessments, DRI, DRO and as my head spins I cant help but wonder how long it will take for me to master this. (my fellow ABAers will chuckle at my word choice yes that was on purpose)

You see, I have never been a black and white type of person. In my eyes there is always another dimension that many cant see. Sure there is black and white some call it gray area I choose call it open space. Its that space that we all live in that is, in some way, separate from the rest of the world. It is in this space where our perceptions of our word are formed as they connect and bounce off both our emotion and all of our sensory input.

It is told that how we experience the world is how we place meaning to things. For instance, my grandfather always loved Harley Davidson motorcycles so to me, since his passing, everytime I see a Harley Davidson motorcycle my heart swells in missing him whereas the person sitting right next to me looking at the same motorcycle might be annoyed by the noise because they have a separate experience with motorcycles and may cover their ears as it approaches as I close my eyes enjoying the loud hum as it passes by.

Why am I talking about this? What does this have to do with ABA? It has to do with what I have experienced in my working with my sons treatment plan. There are days that I am able to separate myself and just do the data and talk objectively as he has a difficult behavior. Days that I am able to “be therapist not mommy” but then there are moments, like tonight as hes screaming and biting his hand and I stand frozen not sure which part of me should take over. Its this a job for mommy or is it a job for therapist? The past few weeks I find that line blurring as I become more and more immersed in the vocabulary and the culture of the center. Whats hard is to look at the children younger than my son and separate myself. If I am honest, Its one of the biggest challenges on this journey thus far. Looking at the little children that resemble my own bigger child and knowing what lies ahead for them and their families and while it brings me hope it also makes me sad knowing that they will have days where they will just want to give up and days that nothing could bring them down and I can’t help but feel helpless to a point.

Today, after arriving home from another day of training, I opened all my windows and just started cleaning. I took all my books off the bookshelf and surmised it a good idea to purge them. The less chaos the better. I got rid of every book I owned that was not about autism and still my five tiered bookshelf sat quite full and I couldn’t help but stand back arms crossed realizing just how much of my life has been taken over by Autism and its many splintered facets and decided to just set it all down. I opened the windows and the front door to let the light in and turned off the door alarms. I turned off the radio and listened to the hum of the neighbors lawnmower and breathed in the smell of fresh cut grass. I remembered how as a little girl I would listen to the sound of morning doves and wonder why I couldnt ever find the Owls in the trees. (I would be 23 years old before I would learn the true origin of the sound and laugh at myself)

Its strange how long I can go lost in a world of autism without realizing the emotional denial I am forced to live under. Really, it goes far beyond the emotional denial, its the denial of my senses to feel the sun through the windows, the sounds of life outside as the rest of the world continues spinning, the denial of social interaction that does not include the word autism or therapy, there is so much that even when I am alone I find myself still placed under the rules of its existence.

I wish I could paint the picture better. I fear that I am leaving a sour taste with my explaination though that is not my intention. I think that what I am trying to say is that I feel lost in this world somehow and I’m not really sure how to find peace with both of the worlds in my open space within. The chaos is no longer in the autism diagnosis its self for me the chaos is in realizing that the autism diagnosis is not all there is and maybe sometimes the mommy part of me is the best therapist and I need to stop denying myself and my son the beauty of life beyond the data.




2 thoughts on “Beauty Beyond the Data

  1. I, too, am a person who sees the gray and I loved your use of the term open space. Sometimes I can slide back and forth along the gradient from black to gray to white. Sometimes, though, seeing things in the middle for me feels more like bouncing off the walls, more in the image of your open space. Being mom and therapist seems to more more like the latter. Take time to open the windows.


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