Look Who’s Still My Hero!

While pulling off a bit of spring cleaning, I came across two file boxes filled with programs that I had created for my daughter’s home behavioral therapy program in the 90s. These directives are about twenty-five years old, and as I pull out random cards, I am taken back to a time when my daughter could barely put two words together. Could not sit still for thirty seconds. Could not understand one-step directives (e.g., pick up the ball).

When she finally could put two words together easily (e.g., brown dog, pink pig) and, finally, when she started to use echolalic language (i.e., the repetition of vocalization made by another person), I knew I would be able to teach her anything. And I would have to teach her behaviorally.

When I set up my daughter’s home program, there were no autism websites to peruse for ideas, no BCBAs (Board Certified Behavior Analysts), no database of therapists (today called Registered Behavior Technicians—RBTs). What I did have at my disposal were a few autism research papers and a handful of behavioral psychology students from a nearby university who were willing to be paid to administer ABA (Applied Behavior Analysis) methodology. I was the “BCBA,” and many times I simultaneously wore the “RBT” hat. I hired the therapists, I trained the therapists and, more times than I care to count, I fired them.

When I was picked to be playground supervisor, I would
listen to what the kids would say and create programs.

I was and still am grateful to a couple of parents who generously offered copies of their programs, and therapists would often suggest concepts that were being used with other families they had worked for. From there I created the rest. Many of my ideas came from listening to “neurotypical” kids, and the sophistication of their language always amazed me. I remember how discouraged I felt knowing she had such a long way to go, but I also remember my elation when she could master a concept across many environments and naturally use language expressively and receptively.

I longed for the day when I would not have to teach her “discretely” (teaching concepts in small, step-by-step increments before putting them together), and many years would pass before I was certain she was able to learn on her own. I was practically giddy when my daughter decided that she would start reading on a regular basis, and I relish the times when she tells me what she has just read.

I wanted my daughter to experience what other young women do, and I know her behavioral training has helped her with that. Her relationship with her boyfriend of almost a year and a half has given her much joy, and I am so happy that she has the opportunity to live with these feelings of love and empathy and understanding.

I have made many mistakes over the years, and there are probably many more that I am not aware of. I did my best, I know, but even now I lie in bed at night, unable to sleep, wondering if I could have done more. Wondering if I should have taken another road. Wondering where she would be now had I started her program earlier. I try to tuck these feelings away, but their leave is temporary. Maybe someday.

So, this Sunday my daughter turns twenty-nine, and I couldn’t be more terrified. Why? Next year she will be leaving the safety of the “twenties,” which means I have one more year (in my mind, of course) to consider her a “young adult.” In my mind, the age of thirty is a maturity milestone, one that is almost as important as a teenager reaching eighteen. Silly or not, the trope I’ve embraced is there, and sans familial intervention, it will stay. I am sure of it.

Conversely, I know that she has to catch up, that her emotional intelligence is a bit behind. I don’t know exactly what I expected of my daughter so many years ago when I sat at the kitchen table organizing her home program, but I am grateful that she is a lovely adult young woman who is curious, kind and thoughtful.

As I have written before, my daughter is my hero. She plays a starring role in my life and is inherently intelligent and clever. Those wonderful qualities have only intensified over the years, and I am grateful that I am able to witness them. Each and every day.