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Where Passion Can Be Found

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Where Passion Can Be Found

February 4, 2016, Marilyn Lord

That hard-to-find yellow boy's outfit was courtesy of my best friend who understood completely.
That hard-to-find yellow boy's outfit was courtesy of my best friend who understood completely.
Even before I became a parent, my pull-yourself-up-by-the-bootstraps urban upbringing ignited my passion for a safe, stereotypical suburban life. I wanted a life where a mother’s greatest concern was getting her kids into the right school, the right extracurriculars, and the right coordinating outfits for the annual family photo. My passion, then, was about making life predictable and easy.

All was going according to plan except for the thing that sneaks up on you - autism. It was easy to funnel my passion into ABA therapy. The benefits were obvious. The way I looked at it, if I go all in, then my daughter would be OK. Her future, and the life I imagined for our family, would not be lost.

These high stakes meant that everyone who came to work with Sarah was under my microscope. I was always silently assessing the Behavior Interventionists. Did they have what it takes? Did they have passion like mine to make the difference?

In our first group of 3 BIs, Amy emerged as the model of what I was seeking. A young, energetic, athletic college graduate with an education degree. Amy even looked like Sarah with their matching blond bobs and Polish heritage showing through. In fact, they could have passed for mother and daughter. But unlike Sarah’s real mother, Amy was comfortable in her own skin, and Sarah loved her rough and tumble ways.

Megan was a BI for both of my children before becoming a supervisor at ACES. Here she is ready to help Sarah through her first middle school dance -- a Hawaiian luau.
Megan was a BI for both of my children before becoming a supervisor at ACES. Here she is ready to help Sarah through her first middle school dance -- a Hawaiian luau.
Right there on the front lawn, Amy would lie on the grass and lift Sarah up with her feet for her own version of airplane -- Sarah’s favorite reinforcer. It reminded me of an acrobatic parent foot juggling their tiny child in a circus. Today, this wouldn’t “fly” in our safety conscious company, but in the years of freelance ABA, it did. They did.

Unfortunately, this match-made-in-heaven blinded me to the gifts that others would offer once Amy moved on. BIs would finish a session with Sarah feeling pleased about their breakthroughs, however, my summation often started with: “That was good, but . . . “. In my quest for a cure, and worried that time was ticking too fast, I looked for perfection. I only vaguely noticed how my comments could erase smiles and cause shoulders to drop. At one point a BI said to me: “I can’t work for you, you’re too intense”. Then, she quit.

Dr. Phil once said that the word “but” means: “Forget what I just told you, now I’m going to tell you what I really think.” I finally saw myself. That BI’s searing statement woke me up to the fact that Sarah was not the only important person in the room.

Grateful for my early lesson in appreciating our staff, gatherings like these became a priority.
Grateful for my early lesson in appreciating our staff, gatherings like these became a priority.
By our third year of ABA, the reality was setting in that autism treatment takes time. Adam had just been born, and his ABA therapy would begin 3 years later. The number of BIs entering our lives would be many. Each would be unique and not fit my mold. Each would bring something new for Sarah and Adam to learn from and adjust to -- just like the real world.

In my increasing acceptance, I began to see what the BIs could teach me through their example. “I learn so much from her” is something I heard many times, yet for years I struggled to understand what they were talking about. From my vantage point, Sarah didn’t give a lot in return for all the effort being placed in her. I kept a mental scorecard. How many returned greetings? How many times following directions? Never enough for me. So often, it was the BIs who had the ability to see something deeper: Sarah’s determination, resiliency, industry, and ability to make herself happy regardless of what other people were expecting.

I celebrated our BIs successes even when it meant they would be leaving us.
I celebrated our BIs successes even when it meant they would be leaving us.
My greatest lesson came the day I broke a cardinal rule of ABA: don’t interrupt a session and put your attention on an unwanted behavior. Adam was 6 years old and in his room with his BI, Laura. I heard him throwing toys and destroying the room in a familiar tirade aimed at ending all non-preferred activities pronto. Laura had a delicate, ballerina-like appearance and I seriously worried about her safety. So, I came in the room, uninvited, in the hopes of stopping the momentum. As I attempted to gain his compliance, Adam turned on me, spat in my face -- and laughed. I was crushed. Devastated. The great holding-it-all-together came crashing down and poured out of me in uncontrollable heaving sobs.

That is when Laura stepped forward. She put her arms around me while I cried like life was not worth living. Her presence was serene. She was completely silent. Yet, I felt she was as deeply in the moment as I was. In time, I recognized something valuable. Laura was showing me how to not make a moment wrong, I felt her non-judgement of Adam, and her compassion for me and what I’d brought upon myself. Later, a wise person told me to consider troubling behaviors as “information”. With information, something constructive could follow, and emotions would not derail us.

ACES recently gave me an award for demonstrating one of our 7 values: “Passion in Action”. The truth is, my adult life started with an aspiration that would seem unimportant to anyone but me. As the saying goes, I didn’t sign up for this, however, our behavior interventionists do. Like parents, the reality slowly descends on them about what they’ve taken on.

In 2014, Sarah and Adam were reunited with their last BIs, Denise and Kelly, who each worked with them for 2 years.
In 2014, Sarah and Adam were reunited with their last BIs, Denise and Kelly, who each worked with them for 2 years.
They have the option not to stay, but the ones who do find that the core of their passion, their caring for the child, take root and allow them to weather the behavioral storms, the deflating statements of desperate parents, and still do their best anyway.

Nearly 40 Behavior Interventionists served Sarah and Adam over the course of 17 years of ABA. Our BIs were the engine of their programs and delivered thousands of hours of growth opportunities for my children. They shared in the fun, the serious, the ridiculous, the dangerous, the embarrassing, and the heartwarming. Our family owes them so much.