Mystery Jam and Other Achievements

8 January 2008 at 3:10 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Dyscalculia, Dyslexia, Epidemiology, IEPs, Learning Disabilities, Special Education)

I lost a label. I don’t mean the sticky label missing from the jar of “mystery jam” in my pantry (the goo is yellow, so I’m pretty sure it’s last summer’s ginger-pear jam), but rather a diagnostic label. For many parents, one of the highlights or milestones in life is for their child to “lose the label”.

Once-upon-a-time the getting that label (or labels) was highly important, so everyone knew what the problem was (well, sorta) and so the child could get some kind of educational or therapeutic services. Getting the label was oft times a relief because it meant that Someone Official had recognised that the child’s problems were not due to bad parenting, moral failure, or general laziness on the child’s part. Usually parents suspected something was “off” for quite a while, so having that validated is a bit of a relief.

Of course, then once the suspicions are confirmed, there are often new kinds of feelings while adjusting to the new daily reality. Frequently there are skirmishes with school districts or other bureaucracies. Sometimes there’s a bit of a grieving process for not having the perfect little darlings imagined during pregnancy. Some families have issues with relatives not understanding, accepting or even “believing in” whatever problem with the child is dealing with. Nasty episodes can erupt in extended families if one of the parents is accused of “causing” the problem or bringing “bad blood” to the lineage.

And of course, a number of parents eventually realise that the child’s issues are echoes of some of their own issues. Going through these things is very complex, sometimes stressful, and often enlightening. Having a child with a disability does not automatically tear a family apart or make the siblings resentful; depending upon how the parents respond to the issues and to each other, it can strengthen the family members’ ties to each other, and lead people to be more compassionate and less judgmental.

So losing the label can mean that the family has (finally!) managed to get beyond a lot of those stresses. Or so it seems.

But what does it really mean to “lose the label”? It can mean a number of things.

“Losing the label” can mean that the child has matured and caught up with their age-peers. One of our children lost this kind of label. The formerly “speech-delayed” child is now a highly verbal English major. Developmental timetables are averages for populations, and there will always be some outliers to those averages. It’s good to remember that the skills of a toddler are not always indicators of adult achievement.

“Losing the label” can mean that the child’s problem has been “corrected” or “remediated”. The problem has been effectively overcome, to the point where it’s no longer a significant problem. The therapists, the school district that may have employed them, the family, and the child have all succeeded in the neatly-documented IEP goals. Dyslexic children are one example of this category, and they grow up to be dyslexic adults, some of whom have few problems, and some of whom have to work a bit harder to read and write.

This second category was the kind of label that I lost. After a few years of speech therapy, I no longer had a speech impediment. My diction was sufficiently clear and standardised, per the goals of the speech and language therapist. That doesn’t mean I’m “cured”, just that my speech is sufficiently normal. In truth, people have always asked me where I am from because of my “accent”. I have lived in a whopping two states; they asked me that in the state where I was born and spent my childhood, and they ask me that in the state where I now live, several miles from where my parents grew up. But the problem is not cured, just remediated. Some days I have difficulties enunciating, or intermittent stuttering. At those times I tend to over-compensate, which sometimes yields a kind of “Received Pronunciation” clarity that only adds to the accent-like quality. And yet I do a lot of public speaking, and have also recorded books for the blind and print-impaired.

“Losing the label” can also mean that the child has improved their skills or matured and no longer requires special services. People who learn to successfully cope with AD/HD and do not use medication would be an example of this category. They are doing sufficiently well on their own, and because are not using medication, are no longer under a physician’s care for the issue. Some children do seem to grow out of their AD/HD. Some just grow out of the more visible hyperactivity part, still retaining the “executive functioning” type issues. Others don’t grow out of the problems, but adapt and learn to compensate. In such cases, “losing the label” means they have slid out from under the umbrella of needing services. The original condition may still be there, but it’s not extremely problematic.

In any of these categories, the now label-free child is sufficiently able to function like most of their peers. They may even be (to use a horribly trite phrase) “indistinguishable from their peers”. I always find to be something of a humorous goal, as most people then spend years of effort trying to distinguish themselves from their peers. Sometimes “normalcy” is just mediocrity, and not nearly as exciting an achievement as we’d once thought. If you’re going to be not-normal, then you might as well get some enjoyment and distinction from it!

But you will also notice that in these categories, rarely is the original diagnostic condition completely cured, removed or gone. The child or adult is now a successful dyslexic, AD/HD, autistic or whatever child or adult. And yet, when a person is ill or stressed or overwhelmed, they may find that some of the condition re-asserts itself by creating little problems. Losing the label doesn’t always mean losing the condition, just losing the severity of the problems associated with the condition. Losing the label doesn’t mean that one doesn’t have to try a bit harder, or manage things a little bit differently to succeed. It is something of a foolishness to expect that if someone has lost their label that everything is peachy-keen fine, smooth sailing from now on.

Having lost the label means that one can also lose some of the support systems, and thus have lost some of the accommodations. Having lost the label means that one can also lose some of the acceptance and understanding that doing everything things requires a bit more effort, and that when stressed, doing everyday things requires even more effort.

They say you should label jars, not people. That can be a helpful attitude, insofar as people are more than the sum of their descriptors. But part of the reason we create labels is to describe things and to validate them, and without such labels others would frequently resort to other descriptors that are much less helpful. Labels are not bad unto themselves; it’s how we use them that matter.

One of my coworkers made home-made jellies for Christmas. She got the batches of different flavors mixed up, and apparently all the flavors were made with red juice. So everyone ended up with a jar labelled “Mystery Jelly”. I think mine might be cranberry-apple jelly. I’m not sure, but it really doesn’t matter. The jelly is yummy, and the effort to do all that canning is much appreciated.

Losing a label is often a highlight or milestone in a child’s life. But like my two jars of jam and jelly, whether or not there’s a label, it is what’s inside that counts. The label may describe the contents, but the presence or absence of the label doesn’t change what’s inside.