While Christopher and I were settling into our new relationship, I had a tough decision to make. After fighting for 18 months to secure applied behavioral analysis (ABA) therapy for my daughter, Katie, I was now struggling with how to proceed.
Our previous ABA team had been invaluable—helping to curb much of Katie’s negative behavior and solving countless autism “mysteries.” But we lost Mia, Brad, Juan, and the other team members when Katie’s insurance changed. (Yet another reason for single-payer health insurance. Disabled kids shouldn’t lose services for huge chunks of time simply because of a change in insurance.)
After an 18-month lapse in services and a child in the throes of puberty, I was eager to hand things over to the new team. I assumed we would brainstorm goals and then they would develop a plan to meet those goals. I’d be assigned “homework” as the previous team had done. In short, I had high hopes that the new ABA team would help me tackle the problems that had come with puberty.
It didn’t work out that way.
For starters, it often felt as if I knew more about autism than the new ABA team. Plus the supervisor kept calling Katie “Cat,” despite my constant corrections. And why were they treating teenage Katie like a preschooler? It would be one thing if she didn’t know her colors, but Katie did—had known them for years.
Katie had a meltdown at the social skills group due to an inexperienced aide combined with far too many people packed into a tiny space and no sensory equipment. As a result, they postponed Katie’s participation in the social skills group. When she lost it at a park due to sensory overload and a different inexperienced aide, they banned community outings. Stuck at the kitchen table for three hours straight, coloring as instructed, Katie began to rebel. And my home, once again, bore the brunt of her wrath.
For several months I debated what to do. It seemed wrong to drop the one therapy “proven” to help those on the autism spectrum. Plus Katie desperately needed a social skills group, and unlike our previous team, this provider had one. And yet, ABA now seemed to increase Katie’s negative behaviors rather than decrease them. Was I making excuses? Mom insisted I was. But I couldn’t shake the feeling that ABA was making things worse, not better.
I kept going around and around in my head, unsure what to do.
When the supervisor asked me to repurchase Candy Land and Chutes & Ladders—well-used toddler games I’d recently donated to Goodwill—I refused. I asked for alternatives, and they sent me a list of other toddler games. Were they kidding? Why would any 13-year-old want to play toddler games?
I asked my college girlfriends over lunch in Truckee, and within five minutes these non-experts had brainstormed a list of age-appropriate games with simple rules that didn’t require much talking. Why hadn’t the so-called autism experts been able to do that?
But more importantly, what was I going to do? Where could I find the answers I needed?
To be continued…
Until next time,
Cynthia
