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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.

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.

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.

 

This is Happening

THIS.jpg

Once, I showed some friends a picture of Collin doing something that seemed amazing to me. But I could immediately see from their faces that they weren't sure what they were supposed to be excited about.

So, let me help you out. This contraption is called a gait trainer and here are all of the big deals in this video: upright trunk, head looking straight ahead, arms swinging by his side, and most importantly RECIPROCAL STEPS. That means left-right-left-right and it's a small miracle. He really is bearing weight with his feet. He really is helping to move himself. He is coordinated and determined. And he will be getting his very own gait trainer any day now. Watch out, world.

Throwback

I love looking back to earlier points in our journey, both what Collin was doing and what I was thinking. While working on two upcoming series for this blog - one on caregiving fundamentals and one on managing therapy schedules - I delved into the Collin the Champ archives and came across this little gem called "Childhood: Where Does Therapy Fit?". It's good preparation for where we will be heading in the next few weeks at This Rare Day. 

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A picture of three year-old Collin around the time this post was written. You're welcome.

A picture of three year-old Collin around the time this post was written. You're welcome.

As summer winds down, we're nearing the end of a blissful hiatus from most of Collin's therapies. It wasn't my choice, I'm sad to say. Therapist vacations and therapy center breaks just aligned favorably and we found ourselves in a 3-week therapy lull. Interestingly (and in large part due to how well Collin does during less busy times), it seems that it is always during these breaks that I end up thinking through things differently. And though the past couple of weeks have been a blur of BiPap troubleshooting, I have still found myself stepping back from the daily minutia and daydreaming on Collin's behalf.

I say 'daydreaming' because this is not the summer I would have chosen for a 3 year-old. With a minimum of one therapy session a day, not including travel time, doctor's appointments, the hours of therapy we do at home, and the 101 trips to the potty Collin takes daily, there wasn't room for much else. He's been swimming at our amazing neighborhood pool no more than a handful of times since it opened. I took him to the zoo yesterday morning for the first time all summer. We had a wonderful time together and Collin interacted more than during any other zoo trip ever. I thought Why don't I do this more often? And I answered myself, Because there is no time for it.

I want Collin to be as independent as possible. I want him to learn to move himself, to eat, to communicate - in whatever way each of those things can come to pass. I want to equip him to have the fullest, richest future possible. That's why we search out the best therapies and commit to them.

But what about the therapeutic benefit of a free, secure childhood? One that is swathed in love and buoyed by creative enthusiasm?

Soon after Collin was diagnosed with Infantile Spasms and my heart and mind were trying to adapt to our new reality, my mom gave me Cushla and Her Books, which she had read in grad school. It's a study of a couple whose daughter (Cushla) was born with significant medical and developmental disabilities and the path they took to giving her the best life possible. (I actually wrote to Cushla herself right from Collin's hospital room and later ended up getting a lovely email from her and her dad. I was star struck.) What I remember most from the book, even more than the huge impact reading had on Cushla's development, was something that happened toward the end. The family decided to leave their home and move somewhere more rural. I remember it being near a body of water. And Cushla flourished. She just took off. I interpreted this to mean that the free, easy lifestyle and the increased time spent outdoors provided an ideal environment for Cushla's development.  Her best therapy was spending more quality time simply being a kid.

It makes me think of my own childhood, which I think I can safely call ideal: raised on a farm, surrounded by loving family, very little structure outside of chores and basic rules for safety and respect. I still remember almost viscerally the exhilaration of having a whole morning free to run and swing and 'play pretend' with my sister. Sometimes we just hauled our stuffed animals out under the tree or read books in bed.

And even though Collin is a very different 3 year old than I was, I don't think it is unreasonable for me to want the same childhood for him. Just because he can't run and jump doesn't mean summers shouldn't be golden for him. Just because he can't see well doesn't mean he shouldn't get swept up in the world of books. Just because he needs help with every aspect of his life doesn't mean he shouldn't enjoy the pleasure of simply being.

We've made steps in that direction. I've taken his home therapy routine and wrestled it into something resembling a preschool schedule, in which his eye and hand therapies lead up to an art project or his listening therapies lead up to music time. But even though it brings some purpose and beauty to a long list of tasks, it's still more and more structure. More and more tasks.

I don't have any easy answers. The hard truth is that therapy must be a part of Collin's life, and likely always will be. I should clarify that I am incredibly thankful for all of the therapies we've found, that I love his therapists and the benefits he gets from his time with them. And trust me, I'm very okay with asking him to work hard myself. But I'm reaching the point where I want to think more seriously about the assumption that more therapy is better, no matter how extensive the needs. And I want to be more intentional about creating time in Collin's life for freedom and fun, more space for the plain old magical breathing and growing of childhood.