What I wish I had known before saying yes
I have two neurodivergent kids. We spent years in ABA because our doctor said it was the next step. It felt urgent. We were scared and tired. ABA was fast to approve. OT and Speech were “limited” or waitlisted. The message was clear. Take what insurance pays for.
We were told more hours equals more progress. It did not work that way for us.
Our kids learned to follow prompts in the clinic. At home they were exhausted. They masked. They melted down after holding it together all day. Rewards got bigger. So did the stress. The goals were about compliance, not comfort. No one asked how fluorescent lights, scratchy clothes, or hunger affected behavior. No one asked what our kids wanted.
Here is what I wish someone had told me before we started:
- Insurance is not neutral. ABA was preapproved for long hours. OT and ST were capped or delayed. That shaped our choice more than need.
- Sensory needs are not “behaviors.” If your child chews shirts or avoids noise, an OT can assess and help with real tools for daily life.
- Communication comes first. If your child is frustrated or shuts down, a Speech-Language Pathologist can explore AAC, social communication, and feeding needs.
- Generalization matters. Ask any provider to show how skills will work at home and school. If skills do not transfer, the plan needs to change.
- Hours are not a magic number. Start small. Set a short trial with clear goals you can see. Scale back if your child is wiped out.
- You can say no. You can decline goals that feel wrong. You can ask for an OT or ST evaluation first. You can appeal limits.
If your child has trouble staying focused in therapy, that is information. If sticker charts make your child anxious, that is information. If the team talks more about “compliance” than comfort or communication, pay attention. You are allowed to pivot.
For us, shifting to OT, ST, and later feeding therapy changed everything. We saw less masking and more real skills. Mealtimes got calmer. Play felt like play. Our kids were heard.
It can feel overwhelming. You are not alone. Your child’s dignity and energy matter. Ask hard questions. Choose the path that respects your child, even if insurance makes it harder. Your gut is a valid data point.
