Words have power; sometimes too much power.
I agree that the pen is mightier than the sword. I understand that words make the world go ‘round.
I get frustrated, however, that people like Jake live and die by the written words of others.
Recently, Jake and I lost our fight against the state regarding Section 28 services. We lost 10% of Jake’s hours because one of his goals “appeared custodial” to the reviewer. By the time we got to appeal, the second doctor (the one who ran the appeal) didn’t have all the information in front of him, which made it difficult for both sides to establish and defend their positions – and in the end we lost.
One man’s interpretation of another man’s words cost Jake 10% of services. The need is still there, the daunting diagnosis ever-present, but simply due to the way it was worded, we got ‘dinged.’
The new upcoming, government issued, proficiency-based diploma system will affect thousands of children after its 2018 implementation. The conference I went to reinforced that “just because” a kid has an IEP (individualized learning plan), there will be no special concessions given. The manner in which a child proves he meets the standard can be modified, but the standard must be met.
The rationale behind this thinking, they said, was the access kids with IEPs have to the general education curricula. Their success or failure seems to have everything to do with how the IEP is written. Careful word-smithing of the plan can give a child an advantage. This is yet another situation in how wording can make or break a kid’s chance at something.
It bothers me that it’s not the level of need that determines the level of service, it’s in how you ask. There seems like there’s such a potential for a disproportionate distribution of resources. There are no extra-fancy folks that sit around the tables where we write our goals. We’re just regular people doing the best we can for Jake.
Even the word autism has power. When we sat in the office of the first clinician to utter the word autism to us, we were given a choice. “Are you ready for this diagnosis?” We weren’t. Not so much that we were afraid to have autism, because frankly, the symptoms were still there no matter what label we attached. It was because we were so afraid of everything that comes with having a child with autism. The pitying looks, the condescension in everyone’s voice when talking to Jake, and most of all, the low bar of expectation that would be placed before him.
In Carly’s Voice, the BigCalfGuy Book Club book of the month for November, I read, “Barb and Howard never seemed to question whether Carly was capable – merely how to make the impossible possible…” There’s an example of someone looking beyond the label, and to the person themselves. The word autism prohibits so many people from doing that.
I’m also reminded that our kids, and by ‘our’ I mean those on the spectrum, are always listening, even if we adults don’t realize it. The definition and meaning behind the words we use in front of our kids isn’t always fully understood, but I believe their intention is.
To take the power of words concept to the other end of the argument, I think I have to mention the idea that when Jake was younger and his language still so very new and fragile, if he’d ask for something in a store, he was all but guaranteed to get it. There are those kids who ask for everything when shopping, but when my Jake would actually pull a word out of the air and use it to make a need known – it was powerful, and demanded reward.
“The limits of my language means the limits of my world” –Ludwid Wittgenstein
I’m not young or naïve enough to still think that language means “words,” but I think this quote by Mr. Wittgenstein is incredibly powerful. If we take the poetic license and change it to “the limits of my communication means the limits of my world,” think of the effect on people with ASD, and their inherent expressive/receptive communication disorder.
I guess that’s all for now. Sorry if I rambled, I just had to get some of that off my chest and out of my head.
If you have anything to add, or an example where the right words made the difference in your life (for better or worse), please share below in the comment section.