In times of war, victories always come at a great cost. Loss of life, loss of property, and sometimes the loss of a way of life. The civil war was an extreme example of this, as every single casualty was an American. Every victory was bittersweet, as fathers fought sons, and relatives of every other kind were forced to take up arms against each other. So many victories were empty victories, that were necessary to keep the country united. Even Sherman’s march to the sea, that killed the least amount of people, still completely devastated a way of life, and broke down the south’s infrastructure so much it took decades to recover. None the less, it was a necessary change, the world could not continue doing things the way they were. The status quo was broken.
In many ways, having an autistic child is about fighting wars, that have bittersweet victories. There are all of these strategic moves that need to be made in order to achieve the support that our children require. It is an emotionally devastating process. One example is evaluations.
When our children are evaluated, we actually want them to perform poorly. I have heard of parents not feeding their children breakfast before an evaluation, so they perform especially poorly. I myself have smiled internally during an evaluation when Holden does show his true colors. Because we as parents are trying to convince the school, the county, the state, that our children need help beyond the norm. With the government trying to tighten its wallet any way it can, stricter guidelines for these services are enforced. At the same time, when we receive these evaluations after the fact, and we read how poorly our child did, it is a very empty victory. At the time of the evaluation we are elated that our children showed the need for help, but when it is written in a report, and expressed in such detail, it is sickening and depressing to read. It’s hard enough watching the neighbors child, who is two years younger then our child, be able to outperform our child in every social way possible. To read it in print, in a sterile voice, that is apathetic to our beautiful children, that we know to be so much more than they appear, is like a punch to the solar plexus.
I recently had one of these empty victories. Holden’s original diagnosis was made when he was four years old. The verbiage used was such that with the new tougher guidelines for services, I felt could potentially harm him. Anyone evaluating him now would certainly not debate his disability, but the diagnosis itself was suspect. Since we had moved and were under a new regional center, I asked that Holden’s case be looked at again, from the diagnostic standpoint. The regional center agreed, and made an addendum to his diagnosis that made his need for support much more clear. Certainly I am happy to have that security for his benefit, but it just further exemplifies his deficits. It is so very hard to feel any joy in this victory. Was it necessary? Yes! Do I enjoy reading it? NOT ONE BIT!
