When your child is living with a rare disease, therapy is most likely a necessity. Collin started feeding therapy at three months old and over the next few months we added physical therapy, occupational therapy, vision therapy, and nutritionist services. For the first few years, we had a therapist in our home almost every day. When Collin aged out of Early Intervention at three years old, we started spending our days driving all over the region to therapies galore.
Somewhere along the way, I made a shocking realization: there is such a thing as too much therapy.
I remember racing cross-county from one therapy to another one fall day, chewing my lip in anxiety because Collin didn't seem to be making any progress. He might have even been regressing. What was I missing? Did we need to add something new? Do an intensive program?
But then the holidays came and people's schedules collided and we ended up missing every therapy for almost a full month. We did his exercises and stretches, but mostly we played and cuddled and watched Christmas movies. And Collin lifted his head while laying on his tummy for the first time ever.
Collin has always been my best teacher. Here's what he taught me: therapy is a tool. One tool in the big, big toolbox we draw from to build happy, healthy childhoods for our kids. Like doctors, therapists are resources. Their expertise is so valuable, but our job as parents is to gather their insights and instructions and take them back to be integrated into our daily life. The measure of therapeutic success isn't how many times we attend therapy, it's what kind of a difference it is making in our child's quality of life. So, while sometimes a therapy has to happen at a certain frequency, in most situations you have much more flexibility than you might think.
Here are some questions to ask yourself to help determine whether there is too much therapy in your life. Ask yourself these questions every so often because, you know, life happens.
1. Is my kid stalling out? Of course, lack of progress and regression can be due to lots of things, but this is an easy place to start in figuring out the source. Kids need time to integrate what they've learned in therapy, which can't happen if they're going all the dang time. You might be amazed at what develops when your child has down time to play and explore. But my kid doesn't play and explore, you say? Well neither does mine. At least, not in the typical way. But he sure can listen to an audio book or watch a video or get set up with a toy or just be left alone for a few blessed minutes.
2.Do I or my kid dread going? OK, somebody is always going to whine (even if it's internally) about going to therapy. It's work. But there's a difference between not wanting to go and dreading it. My clue from Collin was when he started shutting down every time we walked in the door. My clue from myself was a clenched stomach and way more Starbucks detours.
3. Is it interfering with our Big Picture? You know how I feel about having a Big Picture for your kid's childhood and for your family as a whole. It helps you to prioritize when you're trying to make decisions to keep things happy and healthy. If therapy is interfering with that, something has to change. Period.
If you determine that there is too much therapy in your life right now, here are some things to try:
1. Back Off. This seems like a no brainer, but it is HARD to back away from something you have always been told is vital to your child's well being. Maybe go from once a week to once every other week. Try it in one therapy or in all of them. See what happens.
2. Take a Short Break. Skipping one session is not a short break. Think a month. Short breaks are easy to orchestrate around holidays. Nothing bad is going to happen if you take four weeks off, but you might be surprised at how your outlook changes during that time.
3. Take a Long Break. What if you took the summer off? Either from one therapy or - GASP - from everything? Once, I decided to take a year off from a therapy that was stressing me the heck out. It was a gut wrenching decision and I made it with the understanding that if Collin started to tank, I could start back up at any time. Big surprise: he did awesome and while I still employ a lot of the things I learned from that therapy, we haven't gone back.
The world of disability and rare disease has so little in the way of guidelines or norms. You might feel like you're flying by the seat of your pants all of the time, or like you're just trying to hang on to your sanity. So, it can be very tempting to just put therapies on autopilot and let them be something to check off The List. I really do get it. But just know that you have options. You get to make the call.