Parenting a Complex Kiddo — Seeking OT Perspectives on Documentation, PDA Profile, and Wilbarger Brushing Protocol
I’m a parent to an 8-year-old girl with a very complex profile — multiple diagnoses including ASD (with a PDA profile), dysgraphia, anxiety, significant sensory issues and medical DXs to include Interstitial Cystitis, etc. We homeschool because her needs are high and public school just hasn’t been sustainable for her.
We’ve had a consistent care team for years — GP, behavioral therapist, mental health provider — all of whom have been supportive of her challenges and respectful toward me as a parent. Recently, we added OT to her care team (October–February), and this is where I’ve hit a bit of a wall.
After reviewing her chart for an SSI application, I noticed a shift in tone and language in the OT notes — things that raised red flags for me. For example:
- The OT questioned whether her ASD and dysgraphia diagnoses were “accurate” or possibly an “accident.” (asked me directly - nothing in her chart)
- There seemed to be an emphasis on her "ignoring" physical challenges — implying she could push through or that public school might "provide the structure" to eliminate those issues. (she should ignore bladder urge and not use restroom - they feel pubic school will force her to "wait")
- The documentation included what felt like subtle judgment around parenting and homeschooling.
This surprised me, as these concerns hadn’t been raised by any other long-term providers — and it left me wondering if my child’s PDA profile (which can be very counterintuitive behaviorally) is being misunderstood as oppositional or parenting-related.
Initially - wondering if PDA was the issue - I brought them information on it, to help their understanding (it's hard for me and I live it 24/7 - so I understand). I even had therapist/lic. school psych contact and see if they had questions. Nothing changed and....
We stopped all services about a month ago to regroup. Her anxiety has dropped significantly, but I’m second-guessing myself — especially when it comes to documentation that might follow her or influence how future providers, or SSA reviewers, see her. Do I need "thicker skin?". Waitlists here are LONG - she could go months before we find another set of OTs able to handle her PT/OT/speech etc.
So I’m looking for honest input:
- How do OTs typically approach documentation when family dynamics are involved?
- Is it common to see this kind of interpretation — and how can families navigate this without burning bridges?
- How can I be a better advocate in situations where neurodivergent behavior might be misinterpreted?
And one more thing:
Wilbarger Brushing Protocol — realistic or outdated?
This came up a few times in our OT sessions, but I’m having trouble finding strong evidence for its long-term efficacy. From their instructions: It needs to be done every 90 minutes to 2 hours for several months (2-4minimum) to be effective — is that still the consensus? Has this protocol evolved, or is it considered outdated in most practices?
Thanks in advance for your insights. I'm not here to bash anyone — just trying to learn and do better for my kid.