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How Much Therapy Is Too Much?

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.

Living With It

The nurse for the second surgeon was kind and motherly. When I balked at the impossibility of our situation, she advised us to make the best decision we could with the information we had and then not look back.

Which is much easier said than done.

The most common question I've been asked since deciding not to do this hip surgery for Collin is: Are you relieved?

Yes, I'm relieved to have the decision behind us. I'm relieved that he will not have to endure the surgery. But we also went into this knowing that there were substantial risks either way and that with either route, we were choosing the set of risks we could live with. And that's exactly what we have to do with this decision: live with it.

Because the answer is also no: I'm not relieved. Every time Collin seems to be uncomfortable and I don't know why. Every time his right foot rolls worse than normal or his legs scissor while he's in the gait trainer. Every time the thought sneaks up on me. I worry that we made the wrong decision.

Of course, I would be second guessing our choice even if we had gone the other route. So the crucial part of living with this decision is using my doubts as an opportunity to remind myself. I remind myself not only of why we made the choice we made, but also of the things we were reminded of in making that decision: our big picture, our approach to Collin's childhood, the pattern we have laid out for ourselves with all of the decisions we've already made and lived with.

Deciding

Even if there are no good options, you still have to make the decision.

When we left our appointment with the surgeon, we went for ice cream and agreed not to talk about it until we had had some time to process. It took three full days.

We started off just saying some things out loud -- things we were afraid of, things that seemed so unfair. Eventually, details started to surface and shuffle around and settle down where we could see them. We felt ourselves leaning in one direction, but also saw the gaps in our knowledge. 

I did more research. I contacted doctors and therapists with more specific questions. And Kyle and I talked and talked and talked, first with each other and then with my sister and brother-in-law, who are Collin's guardians in our will. Here's what came out of those talks:

When Collin was a baby, we were new to impossible decisions and most of them pertained to Collin's survival. Since then, we've had years of practice making tough calls and when we looked back over them, we saw a pattern: we have aimed for maximum impact with minimal intervention. 

I call it a fortress of support. We build it around and under him with therapy and specialists, but also with down time and nutrition and lots of individualized attention. We try to give him every opportunity to go as far as he can and follow him as he goes (or stays), remodeling his fortress as needed.

With that in mind, we couldn't see doing an incredibly difficult and invasive surgery to prevent something that may never happen. If we lived in the land of trying to prevent scary things that might happen in Collin's future, not only would we constantly be subjecting him to procedures, but we would lose our minds with worry.

And so we decided not to do the surgery.

We are not afraid to do hard things. This is not a way to avoid difficulty. In either instance, we knew we would be accepting a set of major risks on Collin's behalf. These were the risks we could live with.

Relearning Lesson One

On the morning of my husband's first Father's Day, I sat hunched over my laptop, feeling something shift and desperately wishing I could stop it.

The video showed a baby doing the same jack-knife movements four-month-old Collin had been exhibiting. The video description advised packing up and going straight to the hospital. And the woman who posted the video wrote this:

"There are no more easy options for your child."

The words rang in my heart as unwelcome and true, though I didn't know the extent of it yet. It's a line that has both haunted me and provided a useful handle to grab onto when trying to explain what's so hard about this journey. 

But Collin has been thriving in recent months and years, so there haven't been many decisions to make. Consequently, I had forgotten the magnitude of that first lesson when we traveled to a reputable children's hospital for another surgeon's opinion on Collin's hip surgery. We went prepared to move forward, assuming the doctor would heartily back our first recommendation: do major surgery on both hips, and the sooner the better.

What we got, instead, was something much more nuanced and complicated. The doctor wasn't so sure this surgery would improve things for Collin in terms of function -- the sitting, standing, step-taking part of his life. Maybe it would, but maybe it wouldn't. This surgery was really about alleviating pain. But Collin is not in pain yet and we can't be certain he ever will be. If the pain comes more than 6-12 months from now, it will be too late to do this surgery. Then he might need a different surgery, one with a rougher recovery. There is no way to know for sure. With every question we asked, the answer seemed less clear.

When the doctor stepped out of the room to give us a chance to talk, I stared at my healthy, smiling, kicking boy. Then at my husband, also trying to wrap his mind around what we had just heard. Then at the nurse, her brow furrowed with compassion. 

I said out loud to the room, "So, we have to make an impossible decision and make it soon."

And as the words left my mouth, I flashed back to that moment seven years before, when I stood up from the wicker chair, clutching my laptop with its looping videos of seizing babies.  This was the same life I had been living all along, I told myself. Collin was the same as he had been yesterday, I told myself. But as I walked toward my waiting husband and son, I could feel myself stepping over a threshold I would never be able to cross again.

When Doing All of the Right Things Doesn't Work

The orthopedic surgeons have been sounding the alarm for years now: Collin is going to need hip surgery one day. His hip sockets are too shallow. His femur doesn't seat well. If we don't do surgery, his leg bone will lock in the wrong place and he'll be in terrible pain and unable to bear weight.

I don't do well with scare tactics. They feel like a challenge to me. So we set about researching and consulting and developing a multifaceted plan that would maximize Collin's hip health. We got a stander so he could bear weight on his legs everyday, putting pressure on the sockets to deepen them. We got an adapted tricycle so the motion of his legs would increase synovial fluid and improve overall joint health. We did special stretches and exercises and massages.

So, when I saw that x-ray last week, I felt confused before my heart dropped. There were no hip sockets. They had filled in. One femur head was floating off to the right somewhere it shouldn't have been and the other was barely catching the lip of the bone that is supposed to snugly cradle it. Surgery has to happen soon, said the doctor. Before it gets any worse, he said.

But there had to have been a mistake - that must be some other kid's x-ray. Because we had done all of the right things. Collin's x-ray would look better, not worse than before.

But the truth was undeniable and now we're in the midst of second and third and fourth opinions, each one confirming that major surgery is coming.

It's not your fault, everyone says. You're dealing with a neuromuscular condition - these things just happen. They're right, but it doesn't comfort me. It's a reminder no one welcomes: that your best efforts don't guarantee success. That competence and diligence aren't enough to protect a kid who has already faced so much from having to endure more.