The Trouble with Treatment: What Place Does Therapy Have in the Life of a PWD?

Hello readers,

As you know, I enjoy reading parenting magazines even though I’m still single. I like knowing what kids are going through, how they think, and what they need from grown-ups. The newest issue of Parents just hit Barnes & Noble, and I found an article that looked rather fascinating. It’s entitled “Your Child Has Cancer.” As expected, it’s about how that diagnosis affects a familyt and what they can do to stay sane when cancer occurs.

I didn’t get a chance to do much more than skim, but even that led to some new thoughts. For example, I thought about what cancer means–for example, the first thing people think of when it comes up. Often, the first thing they think about is treatment. Chemotherapy, radiation, how to get and keep the right doctors, how to deal with meds, how to balance hospital life with “real life,” and how to make sure their kids’ lives and futures don’t suddenly revolve around the cancer. And then I thought, well, despite everyone’s best intentions, life will revolve around cancer in some ways for quite awhile. So would it be better if the children didn’t undergo cancer treatment?

Of course not, we say–and in 99.999% of cases, that’s correct. Why? Because cancer treatment is life-saving. Now, what does this have to do with kids who have disabilities? I’ll tell you. The two are connected because some people think of cancer and disability as closely related. As in, “You would never deny a child cancer treatment, or let him or her tell you not to allow that treatment. So why are today’s advocates having debates about therapy for various disabilities? Should our “disability protocol” move away from therapy, or should we just tell our kids that’s life, like it or lump it?”

I’ve done a little bit of work with this topic before, way back when this blog was a baby. I also talk about therapy somewhat frequently, advocating a “natural” approach to it. But then again, what is a natural approach? How much is too much? How much should advocates, like me and others, agree with the people who say, “It’s similar to cancer–you’ve got to let therapy into a big part of your life or else your child won’t have the life he or she deserves?” It’s a tough question because I so want every PWD to have the best quality of life possible, and often, therapy does help there. I mean, if a child with cerebral palsy has very difficult-to-understand speech, and his parents are not able to improve that issue on their own, you’d think “treatment” through therapy would be part of the solution.

You would think correctly. You see, as much as I advocate a natural approach to disability, I realize there are some times where “experts” are needed. I also realize that as painful as it might be, children don’t have the maturity or the abstract thinking ability to dictate the length and parameters of their own therapies or treatments. Kids have rights, and kids need dignity and respect, but they aren’t equipped to make adult-size decisions. That’s what adults are for.

So essentially, I’m coming down as pro-therapy–with a few tips. And here they are:

1. Recognize that disability is not an illness like cancer. Yes, there are similarities involved. Disability greatly affects life, if not in one way, then in another. Disability needs guidance and help so that it becomes a part of the child’s life, not his or her whole life, and that means treatment. But it cannot be cured or put into remission. It is generally not life-threatening. It is not a reason to put a child into a “treatment bubble” (and neither is cancer, by the way, unless we’re talking about the most extreme and terminal types, in which cases parents can afford a bit of hyper-vigilance).

2. Make sure the treatments you have really help. Get real and stay real. Insist that therapists make treatments relevant to your child’s life. For example, sitting in a rehabilitation room working on posture exercises? Probably boring and not useful. Working on them while playing a favorite computer game? Relevant and useful, because what if you had to stop playing because your neck and back hurt?

3. Treatment and therapy should not be occasions for punishment or bribery. Self-explanatory. Also, don’t make natural gift-giving or opportunities for outings contingent only upon therapeutic success. Example: A trip to the ice cream parlor after therapy can remain a standing tradition–but maybe extra toppings are in fact contingent upon cooperation.

4. Thoroughly vet your therapists and physicians. Make sure they actually like kids (you’d be surprised at how many don’t) and that they see your child as a whole person. Also make sure that the treatment professional recognizes and even plays to your child’s strengths. For instance, if your child likes toy trucks or dinosaurs, those can be used as props for grip training.

5. Take a break. Your home is not a therapy clinic. Of course, some therapeutic things can be done at home, but make sure that this is something you, your spouse, and your family agrees upon. Then make sure you set some ground rules–X is therapy time. Y and Z is not. Do not let therapy interfere with family time or time with friends.


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