Updated: Jun 1, 2020
‘Low tone,’ ‘fast growing cells,’ ‘tumors,’ ‘developmental delay,’ 'rigid thinking patterns' ‘high arched palette’... the words kept tumbling out of the genetic doc's mouth. Would they ever stop? As he continued to rattle off the laundry list of characteristics attached to my son's syndrome, I realized that a diagnosis (this big scary thing that I feared) is nothing more than a group of letters that form a word which came to be attached to a list of symptoms. A collection of little realities. Put them all together and would you have a whole child? No. Even if you pasted them edge to edge in paper doll shape it wouldn't amount to even half a child. No. This guy's list did not include "quirky sense of humor", "killer crooked smile", "impossibly long lashes that women would die for", "gentle empathy", "take-it-to-the-mat stubbornness", "great listener"... In just under two years, I had come to know all these beautiful complexities in my child. No, the genetic doc’s litany of characteristics did not begin to capture MY child.
Before you were made aware of the word associated with your child's condition, there was a reality, a rhythm to life, a way of seeing your child in the world. The question now is, how does the diagnosis or label change that reality? How much weight do you give to that pronouncement? The answer: a diagnosis is important, but don't make it everything.
Parents, grandparents, caregivers, listen up here: The problem is not so much the diagnosis as it is the limitations that we come to assume in our child because of that diagnosis. It is precisely what changes (or doesn’t) within us as the most influential people in our children’s lives that can create seismic shifts over a lifespan.
The problem is not so much the diagnosis as it is the limitations that we come to assume in our child because of that diagnosis.
A realtor friend of mine reminds me that in her line of work it is all about “location, location, location.” In the same way, I would argue that the diagnosis game boils down to “information, information, information.” A diagnosis can inform, but never let it drive your beliefs and actions toward your child. To the extent that the diagnosis points you toward supports, treatment, or therapies that improve daily life for your child it is a useful thing.
On the other hand, if the diagnosis kicks you, full throttle, into “sheeple” mode, resolutely buying into each prognostication associated with the diagnosis, it is dangerous.
Use it for the information and services it provides, but NEVER give a diagnosis the power to control how you view your child or how you behave toward him.
If it causes you to become fearful, overly protective or limiting, the diagnosis has officially crossed the line that separates the productive from unproductive and is doing more harm than good. I am not suggesting that parents of diagnosed children should live in denial. However, you don’t have to swallow every characteristic, indication or limitation that is associated with the syndrome or condition.
When we "expect" to see the characteristics associated with a diagnosis, we treat our child differently. We find ourselves searching for signs of "disability" in what may be just typical developmental variation. For example, early on my son had difficulty with numbers. If I bought into the "cognitive delay" descriptor associated with his syndrome, then his mixing up numbers is sure sign of intellectual impairment. The real problem occurs if I begin thinking of my son as less than capable in that area which leads me to treating him differently. This is how a diagnosis can change us in subtle ways that can have devastating consequences over the course of a childhood.
Remember, our children are children first, with complicated personalities, interests, and developmental rhythms. They share more in common with other kids than they do with a collection of clinical attributes.
Ask yourself the following questions:
1. What are the characteristics or "attributes" of my child's diagnosis or label?
2. Which of these match up with what I know about my child? Which do not?
3. What specific information does the diagnosis provide that I can use to improve daily life for my child?
Try it on: Make a list of your child's personality traits, endearing (or not so endearing) characteristics, and uniquenesses. Keeping going and see how long you can make the list. See how much more your child is than her diagnosis. Note all the places where the diagnosis falls short of describing your child.
We will focus on how to build an environment for our kids with special needs that reinforce the idea that they are capable!