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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.

Do Special Things

I had a cookie for breakfast today. I don't usually. I'm more of an eggs-for-breakfast kind of girl. And plus, cookies are for dessert, not for breakfast, right?

Except that these perfectly crunchy and buttery gluten-free shortbread cookies I made yesterday were calling my name this morning. They were saying Do something special.

I've learned that this is a key for me. The days get so, so long sometimes with the therapy and the phone calls and the meeting of the many physical needs. But a special thing has the power to break up the monotony and break the spell of discouragement.

Some special things I work into my daily routine: I make myself a fancy pour-over cup of excellent coffee in the morning; I turn on my desk fountain when I work; I light a candle while I read.

Other special things, like cookies for breakfast, are special precisely because they don't happen everyday. When they present themselves, you just have to be brave enough to receive them. That means no guilt and no scarfing, only enjoyment and gratitude.

 

Caregiving 102

Let's say you think you have passing grades in Caregiving 101. Your self-care is fairly consistent and you have a good idea of how to get back on track when things inevitably veer off course. High five, friend. That's a big deal.

BUT. You're not quite caught up yet. Because when you're caring for someone for the long haul, you can't do it well without thinking hard about priorities.

I like to call it The Big Picture. It's a vision for your life and your family's life together  - a vision you can see better when you take a big step back. The Big Picture requires the knowledge you picked up in Caregiving 101. What is important to you and your family members? What are your personalities? What do you want to make time for every day? Every year? What would you like your child's experience of childhood to be like? 

Now look, I realize that these can feel like very loaded questions when you're living in the land of developmental disabilities and/or medical complexities. For me, the reaction goes something like this: Sure, I would LIKE for Collin's childhood to not include an endless parade of therapies and medical appointments and social stress. But I don't have that choice, do I? I encourage you, though, not to stop that line of thinking, but to push it further. WHY do I want those particular things for Collin? Because I want his childhood to be happy and carefree, full of free time and adventures. Why?

I want him to be a kid, not just a patient or a client. Now we're getting somewhere. That sounds like a Big Picture. 

How does having this kind of vision impact your life as a caregiver? Well, let's take the example we just explored. Part of my family's Big Picture is that Collin have a full childhood with lots of opportunities to just be a kid. So, when the opportunity for a new kind of therapy arises, I have a metric against which to measure the pros and cons of the opportunity. Will this therapy enhance Collin's experience of his childhood? How so? In what ways might it detract?

Don't forget: your Big Picture includes everyone in your family, not just the person receiving extra care. Because a healthy family must function as a unit, everyone's needs are important. Does this mean you don't have to take your child to a doctor's appointment because you're tired? Of course not. But it also doesn't mean you should set aside your passions so you can do at-home therapy with him every waking moment.

The alternative to determining your Big Picture is being run ragged by other people's expectations. There will always be someone who thinks they know what's best for your child, how to fix things. But ultimately, you're not trying to fix anything. You're trying to live a life. And any specialist, regardless of expertise, lacks the one piece of information vital to truly making the best decision for your child: they cannot see the Big Picture. 

Only you can see the Big Picture for your child and your family. Armed with the strength and creativity and energy that come from self-care, you can live out that Big Picture day by day. And that is real caregiving.

Caregiving 101

Caregiving 101-.jpg

On the surface, I'm an ace caregiver. I have a spidey-sense mama instinct for Collin's needs, wants, and feelings. Try to keep me from fulfilling one of those needs and see what happens.

I slowly realized over the past few years, though, that I was missing something foundational. It felt like I was muscling through my life as a caregiver. Like I was doing advanced course work without having a good understanding of the basics. Like I had skipped Caregiving 101. 

Now I know that Caregiving 101 is called Self-Care. And it's not for extra credit.

Despite what you might think - what you may have been told - you do not test out of Caregiving 101 by becoming a parent. Just because you're keeping all the wheels on your wagon doesn't mean you passed Caregiving 101. However much you'd like to just move on and forget about it, you're going to have to go back and take that class eventually.

Because I am not naturally skilled at self-care and I can pretty much guarantee you're not very good at it, either.

Now, this is not where I tell you how to care for yourself. Sorry. This is where I tell you that you must learn how to care for yourself and then - here's the kicker - do it. 

I will give you some suggestions of where to start, though. Based on my own clumsy, halting journey, here are some jumping-off points.

1. Take an honest look at your basic physical needs: food, water, movement, sleep, clothing. Are you meeting those needs? This is not a joke. It's very, very common for caregivers to neglect their body in a shocking manner. Are you eating regularly? Are you eating something other than junk? Do you use your muscles for something other than working and stressing out? Are you getting anywhere near the amount of sleep your body is asking for? Do you have some clothes you don't mind leaving the house in? I'm not talking about overhauling your life to achieve a goal weight. Screw that. I'm talking about treating yourself like a human being.

2. Once you have learned how to meet your basic needs, try to figure out your emotional needs. This is going to vary widely, of course. Spend some time figuring out your personality: what makes you tick, what makes you want to run screaming in the other direction. Think about your relationships and your alone time. I've been working on this one for years and I only recently learned that I'm a highly sensitive person (HSP). Talk about a game changer. There are many good books and tests you can use to help you figure out this aspect of your needs. There are skilled counselors to guide you through the process one-on-one. Modern Mrs. Darcy is a blog that has some great resources on this topic. 

3. Identify your creative needs. Yes, this is a thing. And it's a much bigger deal than many of us know. Maybe your creative expression is cooking or painting or growing things or organizing (people? ideas?). I love to write and edit and knit and make cocktails, so I try to make sure I do a little bit of some of those every day. Meeting your creative needs will bring you life and energy; it will tune you in to beauty and hope. Which puts you in a pretty good position to be an effective caregiver.

CAUTION: This is where many of us tend to laugh in an unfunny way. We roll our eyes or make martyr-ish comments about the impossibility of self-care at this stage in our lives. I'm going to go ahead and call you on that one if you find yourself headed there. I know it's a cover up for overwhelm and heartache. At least, that's what it was for me.

But hear me: you don't have to do this all at once and you don't have to worry about getting it right. Just pick one thing. And that one small thing will make the next one easier and more desirable. 

Everyone you love needs you to be good at self-care. It may seem like just drinking enough water or protecting your quiet time or reading a poem, but in fact it's a powerful and necessary gift to them and to yourself.