Question
Lina Acosta Sandaal, today I feel a bit defeated and just want to cry.
One of my sons (age 12) is newly diagnosed with ASD Level 1. It’s been a journey, but we finally had honest and thorough testing to give us the answers we needed to get the right treatments for him.
Today, we tried our first OT session, at a center. He was not given prior notice as I typically like to do. He said, from leaving the house, he did not want to go but he got in the car.
We arrived and he still did not want to go. They sent a behaviorist and the OT to the car. The behaviorist used a high pitch inflected voice and started talking non stop at him. When he showed no interest she began exploring rewards/bribes. When he said no to that, she asked me if she could physically remove him (this conversation was outside of his presence). I said no, and explained that physical touch and/or restraint would likely result in fight or flight and he would be more inclined to never return if they did that. They convened with the director and agreed to go inside and wait. I sat silently with him for a bit, had a phone call outside of the car, and with only 15 minutes left, I asked him to come in, see what it was all about, I promised I would go with him, I promised him no one would “lock him inside” (his concern) and that I would stay with him while they explained the exercises they would be doing and why. The director subsequently reached out and said she was in contact the whole time and canceled tomorrow's OT because it is clear he needed behavioral intervention and a parenting coach!
I felt like throwing my hands in the air.
I felt frustrated beyond going through all this work and this was the response.
I felt like yelling at her that how could they not understand after knowing his diagnosis that this isn’t a behavior intervention! This is a neuro divergent child!
And then I was frustrated at how many parents this lady is making fall into this trap!?
I took a deep breath and had a zoom call planned for tomorrow, and emailed his dad to attend. I’m going in circles.
So my ask is, how do we know what our parenting choices are, how to draw those lines in the face of what we have, many cooks in the kitchen with advice and at the same time keep our ears and eyes open to make sure we aren’t in denial or falling into the trap of our own fears?
Answer
You handled that perfectly.
You kept in mind his nervous system and how to keep that space safe.
You are not "giving in".
You are building safety and rapport based on MANY hours in the past with therapists, including me, who have lost his trust.
Behavior interventions without the lens and understanding of an overstimulated nervous system is not the best option. At the end of the day the CHEF in the kitchen is YOU. The rest of us need to follow your lead, even if you're making a mistake or in denial. It is our job as professionals to understand and get to know your point of view at each step of the way after a diagnosis and while building rapport.
Tomorrow wonder with the director what you are balancing:
You want him to feel safe in her setting
How will they build safety and keep his nervous system as calm as possible?
See what the director says.