What I wish we had been told before the referral
When my kids were first evaluated, the pediatrician handed us a referral to ABA before we had time to exhale. It was quick, it was covered, and it was pitched as the gold standard. What we were not told was that insurance often steers families toward the service that is easiest for them to fund at high hours, not necessarily the service that meets a child’s actual needs. We learned this the hard way.
ABA changed what my kids did in front of adults, but it did not change how they felt or what they could do for themselves.
Over time I saw the gap between behavior change and true growth. Behavior change looked tidy on a data sheet. Tokens went up, “problem behaviors” went down. But my kids were exhausted, masking, and melting later at home. True growth, which we eventually found through OT and ST, looked quieter at first. It was sensory regulation, communication, and self-advocacy skills that actually made life easier.
- Surface compliance is sitting in a chair. Deep progress is tolerating the chair because your body is regulated and you can ask for a movement break.
- Following a script is saying “hi” when prompted. Real communication is having tools, including AAC if needed, to express needs without a prompt.
- Generalization is not a checkbox. If a skill only appears at the therapy table, it is not functional.
Insurance made OT and ST feel like a privilege we had to beg for. We were offered unlimited ABA hours while OT and ST were capped, waitlisted, or denied as “educational.” Yet those were the services that built self-regulation, motor planning, and communication that lasted outside a clinic.
Medical fact: Occupational therapy targets participation in daily activities by addressing sensory processing, motor skills, and regulation strategies (AOTA).
My takeaway for any parent starting this journey: question the first recommendation that appears to be the path of least resistance. Ask providers to connect goals to function, not just to behaviors. Request trials of OT and ST, and measure outcomes at home and school, not just in a therapist’s notes. If your child is calmer, safer, and more able to communicate, that is progress that sticks. We lost years chasing compliance. We found our footing when we pursued growth.
