Here we are at the final part of Frances's story. Catch up on [Part 1], [Part 2], and [Part 3] if you're just joining us.
Today we’re going to talk about all the different paths Melissa went down to try to get the right support for Frances.
Here's the trail
When she brought up the behavior with her pediatrician, he basically brushed her off and said that this was more or less expected of kids and that she’d grow out of it. That was the full extent of the guidance.
She took matters into her own hands and paid out of pocket for two months of private OT. This one stings a little because it should have been the most helpful. But the sessions focused almost entirely on handwriting and fine motor skills, and Melissa left feeling like nobody was addressing what she actually came in for (the sensory regulation stuff, the meltdowns, the routine rigidity).
The neuro-developmental evaluation did get them a Tourette's diagnosis ( her repetitive stimming behavior was seen more as tics by the evaluator, which led to the TD diagnosis over ASD). The next recommended step was Cognitive Behavioral Therapy (CBT) with a psychologist, but Melissa wanted to save that for a few years later. She was then offered ABA as a stepping stone to CBT, but Melissa felt like the ABA options would create bigger problems.
And through all of this, Melissa was going through a divorce, parenting an infant, and trying to convince a skeptical co-parent that any of this was even necessary. I just wanted to give this mama a big hug.
So when we talked, she had a diagnosis, a lot of unanswered questions, and no clear next step.
Top-down vs. bottom-up support
Most behavioral approaches for kids work top-down. They explicitly train the sequence of the skill. They might also give them a strategy to try or help them think through a situation differently. CBT is top-down. Reward charts are top-down. Many first response solutions that are suggested when a kid is struggling behaviorally are top-down.
There's nothing wrong with top-down approaches, but the problem is that theyneed to access the cortex — the thinking, reflecting, reasoning part of the brain — to be online. They need a child who is calm enough to learn, absorb, and apply something. More importantly, these approaches don’t always lead to sustainable, long term change.
I think Frances needed an approach focusing on bottom-up support first, while using some top-down approaches to help teach some other skills. I wanted her to have a therapist who would prioritize the body and the nervous system, before talking through social emotional scenarios and other cognitive heavy curriculum.
