We recently participated in a research study about how children with intellectual and developmental disabilities and their families experience feeding and mealtime issues. To be eligible for participation in the study, the child must meet the criteria for ID (intellectual disability, formerly known as mental retardation). Along with his ASD diagnosis, R carries a DSM-V diagnosis of GDD (Global Developmental Delay), which is the DSM equivalent of ID for children under the age of 5. We signed up for the research study knowing he would qualify.
At the first meeting with the research team, they had their own clinical psychologist confirm his eligibility by conducting several cognitive tests (the same kinds of tests R has had administered countless times in the past, and through which his original GDD diagnosis was ascertained).
When the psychologist and her assistant finished, there was much whispering about the final scores and furtive glances my way. I caught the occasional ominous sounding word and gathered that he had obviously met criteria by a large margin. The psychologist and her assistant clearly did not want me to overhear how “bad” his scores were. After finishing up the paperwork from the testing portion the psychologist gave me an apologetic face as she quickly confirmed “so yes he meets criteria,” then awkwardly excused herself and left our home, as her part was finished. Her entire demeanor was strained, apologetic, and awkward. She practically screamed non-verbally “Please don’t ask me for a copy of his scores! I do not want to see your reaction to them!” The assistant quickly squirreled away the cognitive testing packet and scores and hurriedly moved on to explaining how the study itself would be conducted.
This is not the first time we have seen this type of reaction from professionals in the field. It angers and insults me every time. Do they think we are unaware of our son’s delays? Given his slew of diagnoses, doesn’t it occur to them that we’ve been looking at scores and reports for 2 years now and there is nothing new about it? Yes, we know our son tests below the first percentile in every single developmental category. Yes, we know his cognitive skills are estimated at about a 9 month old level. Yes we know that he has no measurable (key word measurable) receptive language, no consistent words, and few functional communication skills. Yes we know that he still cannot use a utensil, or roll a ball, let alone throw, kick, or catch one. We know all of this. Much of it is burned into my brain, an utterly useless list of taunting “can’t”s, a litany ground into us every 6 months or so when yet another evaluation is proposed for one thing or another.
It is insulting that these people think to spare us. Not only because of the implied ignorance on our part, but because it also implies that there is something very sad about our child, that surely we couldn’t handle these facts emotionally as his parents. Sometimes it is sad. Sometimes it does hurt. But our son is just another kind of human. As I tell my children, there are so many ways to be a human. This is his way. It does not make him less. It does not make him a tragedy. It does not make his future any less bright. Like all children, and I will say again ALL CHILDREN, he has limitless potential. Limitless.
I like a psychologist, doctor, teacher, or therapist that can look me straight in the eye and tell me matter-of-factly what the results of the evaluation are. Then move on to what that means for how we are going to tweak our plan of care and educational goals for R. These tests aren’t about defining R. These tests are simply point-in-time macro-scale snapshots of his development. That is it. There is no reason to tip-toe around me when you evaluate my child and behave as if this silly piece of paper in your hand has doomed him for life.
You know what that piece of paper does not show? All the things he will do in a more comfortable environment among familiar people. All the functional things he does, in his own unique unorthodox way, that you would not be able to translate but those who know him closely could. All the things he understands but cannot show his understanding of. All the things he is learning slowly in a particular way, but which he cannot yet generalize to you and your slightly different testing materials. All the things he does spectacularly well that the test-makers never thought to include as a skill– such as unscrewing light bulbs, scaling refrigerators, and carefully blowing extraordinarily long strings of spit bubbles that don’t fall apart. I mean really, imagine if the test read “Can your child unscrew 3 light bulbs?” Instead of “Can your child stack 3 blocks?” And really, the light bulb thing is a major feat, the product of almost 2 years of OT for fine motor. There was a time, just 6 months ago, when our boy could not unscrew a simple child-friendly top on an infant/toddler toy, let alone a light bulb from a fixture!
That piece of paper also does not show the laughter. The smiles. The adorable dimples. The joy; my God the joy! This is a joyful child. This child is going places. We don’t know where, and it is sure to be somewhere unconventional, but we believe in him and we know when he gets there it’s going to be amazing.