You think you’re doing so well. You think you’ve made vast amounts of progress. You cannot say enough good things about how your child is improving, evolving, advancing… You have been feeling pretty darned good about yourself and all the work you put in, and let’s not even start on how much praise you’ve been heaping on your little warrior, your trouper, the light of your life…
And then all those zeros start getting circled. And then you start asking yourself the really difficult questions: how much of what your child does is unprompted? How much of what your child does is spontaneous? How much of what your child does is meaningful? The section on Communication had a whole lot of zeros on it, and then there were the Community Use and Functional Academics sections. When it comes to Home Living and Self-Care, J is aces…the rest of the time he tiptoes along the line of “hmmm…no, not really!”
Of course, you are given the option to check the Comment section and make a brief note in page 10, but what you really want to do is write a testimonial that says “this doesn’t sum up my son,” and then proceed to explain that he doesn’t laugh at jokes, but that his sense of humor is definitely intact and functional. You want to write down all the wonderful things he does to document how well he is doing, but you can’t because that’s not the way this works.
After J’s recent psych appointments, his willingness to change the very core of his routine, the reduction in medication over the past year, and his IEP, we were feeling pretty fancy and smug about how well he’s doing. Let’s face it, J is a rock star. J is a badass.
Except on paper. On paper, J is a hot mess. J is a dithering, blundering mess. I like the flesh and blood J a whole lot better because he is more real than the on-paper J. When a questionnaire (assessment…a rose by any other name…) tries to reduce J to an essence of skills, abilities, achievements and hot-button issues that identify him as “in need” (or not) of services. On-paper J has to fit a typical picture that doesn’t quite match the person that he is in the flesh.
As a parent and caregiver, you feel somewhat crumpled by the realization that your child is a sketch of himself on paper. J is a stickman version of himself when I fill out these questionnaires, and I end up walking around asking myself (often quite insistently) if I’m imagining all that J can do, and does!, in his everyday life. I spent a good deal of time this morning going over the questions and trying to, by glaring at them insistently, imbue the circles I’d drawn around the answers with intelligence that -hopefully- will be picked up by the assessor.
I know: fat chance.
J as a series of signs and symptoms, characteristics and markers, inabilities and faults is what they need to measure to determine if he qualifies for certain things. There is no malice in the process (except when they ponder if we’re exaggerating his lack of prowess to see what we can get for it,) and there is also very little interpersonal warmth involved. It is not that they do not care on a human level, but they can’t get involved because seeing -day in and day out- waves of humanity with their frailties and needs exposed would cause sufficient damage to provoke early retirement for many. TGG has learned this; he still needs to withdraw for a while when a patient he’s developed a bond with takes a turn for the worse, or dies. You see suffering, he says, and you want to fix it, but you can’t always fix it, and so you have to go into “clinical mode” and address the issue from that angle. You care, but you are aware of the limitations of your abilities and of the patient’s situation.
I do the same thing. I want to send every vibe about how amazing J is into the pieces of paper that pass my hands and require my attention, but I have to be brutally honest. No, he doesn’t always spontaneously say hello and goodbye, and I have to remind him to move out of people’s way. He doesn’t know how to use the phone, and all he does is hand it to me when it rings and I point at it with my chin because my hands are covered in soap from the dishes. No, J doesn’t leave the house unsupervised, and he wouldn’t know to call and tell us he’s going to be late if he did. J also doesn’t have a circle of friends, or spontaneously seek people out. J doesn’t know how much change is correct change, and he doesn’t always remember to look when it’s time to cross the street. He is neat, helpful, smart, proactive, energetic, focused, amenable…but…
On paper he’s a lot of zeros, a bunch of ones, quite a few twos, and a solid amount of threes that, ultimately, don’t add up to a big number that will impress anyone who’ll say “he’s got a bright future ahead of him.” He adds up to a lot of “needs” and “requires.” It’s a lot to chew on, isn’t it? Wonderful though he is, amazing though he is, impressive though his progress and evolution have been…on paper J’s just not all that, is he?
It’s all part of the process, and it reduces one’s son to an essence that says very little of who he really is, and what you’ve put into getting him to the point where he’s at, but that’s the way it works. The same sinking feeling one gets when, upon arrival at any university, one stops being a person and becomes a student number is repeated in this case: J is a portrait of his disability, not really everything else that is oh-so-very-J.
I’ll live…I’ll need chocolate, but I’ll live. 🙂