Elimination Communication and Tethered Cord Syndrome

Ultimately, Elimination Communication is about the communication, not the eliminating. While Western, and specifically American, society has gradually been cluing into communicating with babies at the beginning of the 21st century, in regards to communicating about elimination it's still a radical idea. It's now not shocking at all to see a mother use ESL or read to a five-month-old. Taking the same five-month-old to the potty? That raises eyebrows. Pediatricians will insist that the child can't possible feel the elimination, much less control it. These, of course, are the same pediatricians that insisted 25 years ago that neonates can't feel pain, such that open-heart surgery on newborns was done without anesthetic. Fortunately, my son's pediatrician is Indian, and doesn't have the American social bias. Russian, Scandinavian, Chinese and even pre-disposable diaper American ideas vary about when babies can, or should, start eliminating in the "potty." It doesn't really matter what the arbitrary time frame is. At some point, people start communication to their children where they'd like the child to eliminate, and the child follows the parents' guide.

Now, that's all well and good for healthy, normal children, right? Once a child crosses over into physical disability that all goes out the window, right? Of course, "those" children can't feel anything, and potty training them is very difficult, if not impossible. I agree that for some children, the potty will never be part of their experience. However, that merely means that conventional potty training goes, too. It doesn't apply to EC. Why? Well, back to the beginning - it's about the communication, not the elimination. Even if a child is 100% disabled, a parent can communicate about what's going on and why. If the disability is of a lesser degree, then a child deserves the opportunity to communicate as much of his experience as he can. He may surprise the so-called experts, with their MRIs, VCUGs and UDs. Even without physical elimination, the social experience of potty can be rewarding, even to infants. Babies know more than 20th century parents or experts gave them credit, even disabled babies.

From the EC point of view, diapered babies are trained to eliminate in the diaper for the first years of life, then a second phase of training kicks in: the potty training. Conventional wisdom denies this. Babies just eliminate wherever, whenever, is that point of view. Then, magically, at some future point, they develop muscle control and awareness of elimination. Thus begins conventional training. From the EC point of view, ec'd babies are ready to learn where they should go, and will go in the potty, over an open diaper, in a sink. They'll communicate and learn to recognize the parent's communication about elimination. However, most practitioners of EC know little or nothing about physical disabilities in regards to elimination. Professionals who do know about the conditions generally don't know about the existence of EC, (unless they're not American, and they're not educating their American peers.) Therefore, from the EC point of view, a physically disabled ec'd baby is eager to learn where to go, even if they can't follow through. They're eager to communicate about elimination, even if that communication means learning to sign "catheterization" before learning to sign "potty".

All babies deserve the dignity of having their elimination needs cared for - ultimately, that's what it's all about. It really doesn't matter what form it takes. The possible need not become the should-or-should-nots. All children can learn to sink to low expectations of themselves, whether it be about elimination or dignity or communication or anything. That's why it's worth it.

Why Untethered? How Untethered?

Why are my adventured untethered? Because for the past three years (spring 2006), my son's congenital tethered spinal cord syndrome has colored my life. He was tethered for over a year (most of that before birth,) and then had a detethering surgery at six months of age. But it's more: I've always marched to the beat of my own drummer; I've always seen the world from a slightly different perspective. Thinking that he's now experiencing the world detethered makes me realize that I've always been untethered: untethered by social conventions. Our experiences effect who we are, and in our case, tethering and untethering are paramount to our experiences.

Now, wait, how did that detethering occur, again? He underwent major spinal surgery at six months. Yes, that's right, as an infant. Pediatric neurosurgery is never fun, but we got through it. Imagine a six month old getting hit by a bus; that's what he looked like. It was a four inch scar then, and will grow with him as he grows. Eventually he'll have a ten inch scar along his spine as an adult. Just to clarify: he did not have Spina Bifida. He has a closed cord defect. Meaning, the tethering occurred well after his neural tube closed at conception. Even so, it is a neural tube defect, and he will always have the syndrome from the tethering.