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| Book cover for "Afraid of the Doctor." |
I recently read the book Afraid of the Doctor: Every Parent's Guide to Preventing and Managing Medical Trauma [affiliate link] by Meghan L. Marsac and Melissa J. Hogan. This post is my review.
So, the reason I was interested in this book is, I have medical trauma. In my case, it's because I'm autistic, so a lot of normal medical procedures are extremely invasive and unbearable to me (and that was even more true when I was a child). I have a little son now, and I hope I can help him to navigate this better than I did as a child. I am very interested in a framework for what consent should look like for children in a medical setting (as I wrote about in this post: Boundaries With Dentists).
It turned out that the focus of the book was on children with serious, long-term medical conditions. For example, a child who has cancer, a child who has diabetes, a child who was in a car accident and needs to go through months of treatment to recover, etc. These children are likely to develop medical trauma because they have to go to doctor's appointments so frequently that it kind of takes over their lives, and the treatments are much more intense than what the average healthy person typically experiences (for example, needing to have blood drawn every single time, having a portacath implanted in the skin, etc).
So, not really my situation, which is that I just do the normal medical things that healthy people do, but they are often overwhelming and invasive to me, because I'm autistic.
So there were parts of the book which weren't relevant to me at all, but would definitely be useful to parents who are in that situation. Like big-picture stuff about how to plan your family's life around your child's medical condition and all the appointments you have to take them to. And psychology stuff about how to take care of yourself and how to help the child's siblings cope with all the changes. All very useful, but not related to the reasons I was reading the book.
And the book didn't say anything about consent as it applies to the child. It did talk about how parents should gather information and take an active role in working with the doctors to make the treatment plan better fit the child's needs. So that was good, but that's just about the parents being able to advocate for their child and consent on behalf of their child. It didn't talk about how to teach your child to stand up for themself.
But anyway, when it talked about specific techniques to help your child handle medical treatments better, there was a lot of useful advice. Here are some of the things it talked about:
Working with the medical team to make things easier for the child: The book says that parents should not be afraid to ask questions, and if something is difficult for their child, the parent should ask if it's possible to do it in a different way. A lot of examples in this book were about timing. Maybe the doctor says that the child needs to wake up at 7 am and take medicine, but the child has a really hard time waking up so early. The parent can ask, does it really need to be 7 am, or could it be later? Some medicines really do have to be taken at certain times, but some can have a more flexible schedule. Definitely ask the doctor if it's possible to change the schedule, if that would make it easier for your child.
Don't just go along with whatever the doctor says- if something is difficult for your child, ask the doctor if there's any way to do it differently to make it easier.
Visual schedules: The book spends a lot of time talking about how to explain the process of doctor's appointments to the child in a way the child can understand. One way to do this is with a visual schedule, which has a sequence of pictures that represent the things that happen at the doctor's appointment. I really like how much emphasis there is on communicating this to the child and making sure they understand what's happening.
Some keywords you can search, to find examples of visual schedules and other things along those lines: visual schedule, teaching story, social story, social skill story.
Medical play: You can buy toy versions of medical equipment, so your child can play with them and become more familiar with them, and less scared. I think this is a great idea.
(Also, this doesn't seem to be an example of medical play, but could be useful: One of the authors of this book, Dr. Marsac, created Cellie Coping Kits, which include an odd-shaped stuffed animal named Cellie, and cards related to medical conditions, to help encourage kids.)
And there were some other good, practical ideas too, besides these. Basically, part 4 of the book was the part with the actual concrete strategies. That's the part that I felt was very useful. The other sections of the book were mainly about really big-picture stuff about how if your child is diagnosed with a really serious problem, this affects the whole family's life, and how do you face that? So, that's useful for people in that situation, but not relevant for me.
One thing that I found kind of, uh, disturbing, was the term "therapeutic hold." This is when you physically hold the child to physically force medical treatment on them. I do think it's sometimes necessary, but isn't that a f***ed-up name for it? When my son gets a vaccine, I hold him forcefully because he does not consent to the vaccine, and it sucks, but it's because he's too little to understand the benefits of, you know, not dying of measles.
It's better if I don't have to do that, but as I said in my post Boundaries With Dentists, even if I use some strategy to convince my son to accept a vaccine, it's still non-consensual. It's definitely better if I don't have to physically force him, but still, either way, he doesn't have a choice. And it has to be that way, because he's a child, but I don't want him to internalize the idea that people have the right to do things to his body as long as they are being "nice" and "reasonable" about it.
If I have to physically force him to get a vaccine, that's nonconsensual. If I have a long conversation with him about how he needs to "be good" and how he has to do this and I don't give him any other options, and finally he agrees to it and allows the nurse to give him the vaccine, that's also nonconsensual. If it happened to an adult, we would call it coercion. I need to make sure he knows that just because someone has a long conversation with you, very kindly explaining why you have to let them do things to your body, and how you need to "be good" and agree to it- NO, that doesn't mean you owe them ANYTHING.
I've seen a few books for children about consent, and they are very much like "your body belongs to you, no one can do things to you without your consent" and I can't get behind that because it's just SIMPLY NOT TRUE. For children, they really DON'T have the right to own their own body, and they really CAN'T, because, like I said, it's very important to me that my child doesn't die of measles or whatever, but he's too little to understand that.
And, I don't know, maybe somebody will make the argument that medical situations are an *exception* to the teaching about consent. And maybe someone will say that actually the real goal of teaching children about consent is to protect them from sexual abuse. All the "your body belongs to you" stuff is a lie, and what we actually want to teach is "if someone sexually abuses you, that's wrong and it's not your fault", nothing more, nothing less. I'm autistic, and when I was a child, there were always people touching me in ways that I didn't like, and I understood that I was the one who was being "too sensitive" and unreasonable. I understood that when adults said "if someone touches you in a way you don't like, tell your parents" they didn't actually mean that; they actually meant if someone touches your "private parts." It had ABSOLUTELY NOTHING to do with whether *I* didn't like the way someone was touching me. No, that was me being unreasonable, and nobody was obligated to care about that or respect my boundaries, because it wasn't sexual so it didn't matter.
So I very much disagree with the idea that teaching kids about consent is mainly about protecting them from sexual abuse. No, I believe that if someone is doing non-sexual things to you that you don't like, that is bad in and of itself. It's not "oh if you force your kid to hug grandma, that's bad because then what if they apply that same logic when someone tries to sexually abuse them, and they don't realize it's wrong"- no, forcing the child to hug grandma is bad in and of itself, not because of its potential to make the child more vulnerable to sexual abuse.
And as an adult, medical situations are the area of my life where consent is THE MOST important. This isn't an "exception" where the normal concepts of consent shouldn't apply- this is where they should apply THE MOST. And I believe this is also very important for children. But how do you define consent for children, when they actually don't have the right to say no to medical procedures that their parents want them to have?
Yeah, those are the questions I really want to talk about it. I think there's A LOT to be said about the link between childhood medical trauma and nonconsensual medical treatment. This book wasn't about that though.
Anyway, that's my take on this book. I think the most useful idea is that the parent should take initiative to gather information, ask questions, and ask for things to be done differently, if the standard process doesn't work well for their child. Advocate for yourself and your child, instead of just doing whatever the doctor says. Also, there were many useful, practical strategies for helping children feel safer and less scared about medical procedures. (I feel these are helpful, as an autistic person, even though overall the book is targeted at parents whose children have very serious diagnoses like cancer.) What I really want to talk about, though, is what consent could look like for kids in a medical context, and the book wasn't about that.
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Related:
Doctors (part 3 of Autism & Teaching Kids to Protect Themselves)
On Gynecologists and Angry Turtles
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