I don’t automatically check on therapy programs to verify the use of best practice for Tony the way I do for medications. Therapy programs don’t come with life-threatening interactions or anaphylaxis. I do tend to read a bit about any therapy type he needs because sometimes it can be hard to find providers where we live, waiting lists can be long, and not every provider feels comfortable working with our son. Sometimes I need to be able to step in when a service isn’t available so he doesn’t miss out on what he needs, and certainly I’ve learned a lot because I’ve needed to work with most of his therapists over the years owing to the nature of his challenges and deficits.

I’ve only ever challenged one of Tony’s therapy programs. And I assure you given how difficult it can be to find ABA services where I live, I absolutely wouldn’t have done so without feeling it was absolutely necessary. And my first preference would have been for us to all work together for a different outcome than what happened.

I know someone who was going to school for their NP and related that one of the instructors explained to the class that if they have pediatric patients with rare disorders or conditions, they need to listen to the parents, because most likely they’ve studied a great deal more about the specifics of those disorders than they as providers will have. I love that philosophy. But, that isn’t always what is experienced in real-world circumstances for parents.

As a parent, I think any provider should listen to what I say about the clinical history and my current observations about where our son is at and what he’s capable of (y’all, did you know he understands some Spanish and can find our car by himself in the fully-loaded phoenix zoo parking lot? That he can remember where the bathroom is in a store he’s not been to in over 4 years, and only ever visited twice?). But beyond that, there are certain situations I feel like make listening to my input imperative:

1) If a provider needs my help to manage the physical behaviors. If someone can’t handle our son by themselves there’s no judgment for that, but if I am needed to manage physical behaviors then I am part of the active team for that type of therapy (degree or not) and my thoughts should be treated as such.

2) If a provider needs guidance on how to help Tony adjust to working with them.

3) If regressions are happening that shouldn’t be.

If a provider doesn’t need me and progress of any kind is happening, I’m not in their business.

Because I am exhausted.

Because I need a break and often can’t get one.

Because sometimes I feel ripped apart inside by all of everything that’s been going on and I just want to be able to step away for a moment. But no matter how I feel on the inside, if any of our providers have needed my support, I have been there to give and do everything they have needed or asked. Because I’m the mom, and that ball will always be in my court.

We’re currently on two wait-lists and have had multiple rejections when it comes to finding a new ABA provider. Some families in our area of town have waited 2 years before finding a provider who had a placement for them on their schedules. This week, we had an ABA provider express interest in working with our family that may be able to start in 4-5 weeks. We discussed my concerns and observations about what has been effective with him, and I was told the BCBA would be comfortable giving it a shot. And I’m grateful. I felt like they listened to me about what is going on, and when providers do that, it’s a gift to everyone involved.