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.

On the Days You Just Can't

Today, I just can't. I don't have any of the anything I need to do this job well. Forces collided - some I maybe could have done something about and some I couldn't possibly control - and now I'm flat and empty. The very thought of making the necessities happen this afternoon makes me want to crawl in a hole.

The thing is, life keeps happening. Collin still needs me. So how am I supposed to give him what he needs when I don't have any of it to give?

I charge up between uses. It doesn't matter how bad you need your phone - if the battery is dead, it's dead. Wanting and even needing won't charge it back up. The only thing that works is plugging it in.

So how does a caregiver plug in when her battery is dead but the needs keep coming?

Step 1: Axe everything that isn't absolutely necessary.

Step 2: Charge

Step 3: Use

Repeat steps 2 and 3 until reinforcements or bedtime arrive, giving you a shot at a more prolonged charging session.

For me, it might look something like this:

Read a few pages of a book (charge). Do Collin's water bolus and set him up with an audiobook (use). Make myself a chai and stare out the window at my neighbor's holly tree (charge). Take Collin to the bathroom and prepare his next ketogenic blended meal; feed him while he watches a video and skip oral eating practice (use). Do some knitting during his meal (charge). Another trip to the bathroom and set Collin up in the wheelchair with an iPad app (use). Do some journaling or other writing (charge).

So yes, this does mean that Collin isn't getting therapy or participating in crafts or experiments or music time during my charging sessions. (See Step 1.) But he is safe. He is loved. And he's not even bored out of his skull most of the time. Sometimes I think he actually likes these days when I'm not up in his business all of the time. But even if he doesn't enjoy this particular day, the more important thing is that, at the end of it, there will still be some Mama left.


Sweet Ride

I've never been into cars. I don't even remember what kind of vehicles other people drive, much less feel impressed by them.

But I'm kind of in love with this one.

If it looks like light is shining down from heaven, that's because it is.

If it looks like light is shining down from heaven, that's because it is.

Collin is a huge fan of the ramp van.

Collin is a huge fan of the ramp van.

As with the wheelchair, we had to wait until we were mentally and emotionally ready for a ramp van. However, the physical component sped up the process when my joints started falling apart from lifting Collin in and out of our old van. 

So, we applied for a grant to cover the conversion (and got it!) and waited for the perfect used-but-new-to-us van to come along.

OK, Mama, can I get out now?

OK, Mama, can I get out now?

It's a game changer. I can get Collin and his wheelchair in the van and ready to go in about one minute. With no lifting. That means several things: much less wear and tear on my body, more chances to have outings just the two of us, and access to more places in the community.

Plus, not many kids get a new car for their first day of first grade. How's that for impressive?

The Essentials: Part 2

Collin chasing his cousin, backpack in tow.

Collin chasing his cousin, backpack in tow.

Collin has a backpack. It is red and black with wide straps and lots of compartments. He carries it on the back of his wheelchair; or, if we're going somewhere without the wheelchair, on the back of one of his parents. 

The contents are nothing like what I imagined my six year-old packing up and lugging around. 

The backpack carries our second tier essentials - items that are half a step away from being nonnegotiable.

- Noise canceling headphones. Collin's uncle picked these out as a Christmas gift one year and they are one of our best and most-used tools. Because he can slip into sensory overload depending on the size/acoustics/vibe of a public place, these provide the perfect way for Collin to continue enjoying himself in a place that would otherwise bother him. And he looks really good in them.

- Extras. Extra g-tube. Extra syringe and extension. Extra gauze.

- Venting syringe. Everybody burps. Even people whose esophagus has been turned into a one-way valve via Nissen wrap. Collin burps by hooking a short extension with a smallish syringe minus its plunger to his g-tube and letting the air out. Just opening the tube port doesn't work because it is also a one way valve. Let too much air accumulate in that tummy, and you have a problem on your hands.

- Pullups and wipes. Collin is potty trained, but accidents do happen.

- iPad. Our portal to all things good. The iPad is a life saver in so many situations. It is the workhorse of our daily life. It is in use probably ten hours a day, whether for videos, audiobooks, music, vision exercises, or hand use practice. Paired with the noise canceling headphones, it can fix virtually any problem.

- Food and meds. Because of Collin's diet, we can't pick up food for him while we're out. So we need to know how long we will be gone - or more specifically, how many mealtimes that will span - and bring that many jars of precisely calculated and measured food, along with accompanying supplements.

- Norwex cloth. Collin's drooling (or 'drizzling', as his cousin calls it) has gotten SO MUCH BETTER over recent years, but some positions still make it hard to control. These cloths are super absorbent and anti-microbial, which is good considering how rarely I remember to put them in the laundry.

- Some normal things. Lotion. Glasses cleaner and case. A deer or duck call. (What?! You don't carry animal noisemakers in your bag?!)

When we were little, my sister and cousins and I always packed bags for our adventures. Toys, books, snacks, a picnic blanket that could double as a cape or a tent in a pinch. There is part of me that aches at how different Collin's bag is from ours. 

But there is another, steadily growing part of me that sees that Collin's backpack IS packed for adventure. Because of what's in that bag, we can go to the park, to restaurants, to the zoo and the orchestra. Because of that bag of items, we are free to venture out our door and into the world.

It's the Little Things: Zote Soap

There is enough mess in this life that can't be fixed. So when you find a little something that crosses even one item off your list of burdens, condundrums, or annoyances, it's kind of a big deal.

One of the not-so-fun byproducts of Collin's phenomenal diet is that all of our messes are oily in nature. Since his food is primarily fat, there is no window of time in which you can wipe it off and save yourself from a stain. If Collin's food or any of its components touch a piece of fabric, you can count on the dark shadow of a stain when it comes out of the wash.

I tried soaking, washing with white vinegar, switching to various detergents. Not even dish soap worked. Finally, I gave up and tried to just be okay with the discolored blotches at g-tube level on all of Collin's shirts. I started wearing an apron when making his food to try to save my own clothes.

But one year, as a fun Christmas gift, I got a bar of Zote soap with a little scrub brush in a cute container. Little did this person know that she was handing me magic in a tupperware.

Because Zote soap gets everything out. I mean EVERYTHING. All of a sudden, with fairly minimal Zote and water scrubbing, all of the stains came out of Collin's shirts. Even the ones that had been washed and dried many times since the time of staining. One time, I accidentally put a favorite hooded sweatshirt through the wash with a fish oil gel cap in its pocket. Ew. Between the smell and the texture, I choked down a little gag the first time I accidentally stuck my hands in the pockets. But I just turned them inside out, busted out the Zote, and had many wonderful non-fishy years with that hoodie.

On top of its effectiveness, Zote lasts FOREVER. I've had the same bar for over four years. At one point, I took a screw driver to it and split it with my sister. I still have plenty left. It's like a little, wonderful-smelling, pink miracle.

I know I sound like a commercial, but I have no connection with Zote. That is, other than the warmth in my heart toward them. I just know a good thing when I see it and I want to share it with those of you who might have anything laundry-related - ketogenic or otherwise - on your black list. Apply some Zote to that sucker and cross it off.