After my son had his surgery, his doctor recommended that he have at least three to four hours per week of physical therapy focused on stretching and strengthening his left leg to improve his overall mobility. Physical therapy, or PT as it’s often called, is an interesting world to enter when you’re raising a child with special needs. Maybe you’ve traveled this path. For a lot of families, it’s not just PT – there’s also occupational therapy (OT) and speech therapy and other therapies, too, like equine and aquatic. It’s a world within a world if you really dig in on these treatments. Therapy can be an essential part of improving your child’s life, beyond all the M.D. visits and “hard” medical treatments, like surgeries.
With physical therapy, it can be hard to figure out whether your child is making actual progress or just constantly moving on the proverbial treadmill. While therapists are not medical doctors, understanding their work can be just as challenging as understanding the medical speak you get from the neurologists and other doctors. Try this on for size… one of my son’s therapists (who is excellent by the way) included this in a written assessment: “Dorsiflexion: weak, but active range to -5 degrees from plantar flexed foot”, and provided a number of scores (that were Greek to me) on an early childhood motor development program. Bottom line, it’s a lot to comprehend. I’ve often felt like I need a physician’s desk reference book at hand to converse with our PT. Especially for when I forget where the gastroc muscle is located. (It’s in the calf).
My family, like so many families, has invested hundreds of hours, a good deal of money in deductibles and copays, and all the energy in to PT hoping that therapy this year is going to lead to some sort of physical breakout. But it never feels like that breakout is at hand, and PT can be like a very slow burn of really small, incremental progress. Some doctors and therapists will even reveal that therapy can often be more about avoiding muscle atrophy or physical declines than making any measurable progress. All of it can be frustrating, but I have learned a few things along the way that I’d like to share.
The first important lesson I’ve learned is that PT is more an art than a science. I don’t mean to say that physical therapists aren’t highly educated medical professionals. They are, and their mastery of the body’s skeletal and muscular systems is vital and impressive. What I mean is that the actual practice of physical therapy seems to involve creatively designing individualized therapy programs to meet a specific patient’s needs. As far as I can tell, there’s no single therapy approach or formula that’s guaranteed to work. It’s not like surgery, where they repair something and then it’s done. Instead, they set goals for progress, or strengthening, or other measurable improvements. The therapy plan itself, and the physical activities they require, can change from therapist to therapist. It’s really hard to say if one therapist’s approach is better than another’s, especially if you’re not trained as a physical therapist yourself. I’ve seen at least four different therapists work with my son, each with their own style and approach. My instincts are — watch and go with your gut on what appropriately challenges your loved one and engages them to participate and work hard. I’m not sure if that’s the right approach, but I’ve used that non-scientific test as a guidepost for selecting and staying with certain therapists.
Another important lesson I’ve learned is to have more than one therapist. Each therapists’ approach can be so different, and the body’s muscles respond to being challenged in different ways (think cross-training, or running sprints even when training for a marathon). I believe that having different PT styles helping your loved one can pay dividends. I’ve currently got two different PTs working with my son, even though having only one would be better financially and in network for insurance. I believe this has led to gains and, for what it’s worth, our second therapist is excellent with kids. That matters quite a bit, because a lot of therapists won’t even work with kids. And those that do, the successful ones I’ve seen at least, turn therapy into a game and masterfully keep the kids engaged by making it mostly fun. That’s a real art and can be a huge boost if you’re looking for results.
I still feel, at times, that PT is just a treadmill and we’re not really getting anywhere for my son. But, then again, I see him every day and perhaps, because of that, I just cannot really see the changes and improvements he’s making. Even on a treadmill, you can cover a lot of ground.
– CP Dad
Read the next post in this series here!