Sunday, April 28, 2013

Reading and writing

Sharp as we know he is, Jordan does not perform well at school in either reading or writing. On his recent report card, his teacher referred to him as a “reluctant reader” who will avoid reading when he can. When he reads, he chooses books below his grade level. When he reads aloud, he reads expressively, but inaccurately: he often misses words or substitutes one word for another, and appears not to notice. Writing is an area of even more difficulty. In the time that other kids write a page or more, he ekes out a sentence. He can have neat handwriting when he takes the time, but he has little stamina for writing, and his regular writing is messy. He can learn spelling words for a quiz, but they often don’t stick. In first grade, he said he didn't like spelling or writing words. In second grade, his teacher said he did more letter reversals than she had ever seen in a second grader, and his writing homework was miserable for all of us. Over the years, his reading and writing have both progressed (we hardly see the reversals anymore), but does not seem to be catching up.

As more and more reading and writing is expected of him, the stress is building up. He says he has plenty of ideas for what to write, but he can’t really get them out. He is distracted by noise in the classroom and by his teacher constantly telling him to get to work. He is stressed out by her saying that no one can leave for recess until everyone is finished with their work. Book reports and other writing-oriented homework take forever, and he has to do more at home because of what he’s not getting done in class. His teacher’s position seems to be that he needs to buckle down and get to work: she says he is “more interested in wandering the room and reading with friends than in reading” and “needs to take his work more seriously.” This had mostly been my attitude, too: he’s an eight-year-old boy, school is kind of boring, he is an independent-minded kid, and he doesn’t want to do her lame assignments.

But as time goes on and the situation doesn’t really improve, we’re starting to wonder. A few days ago I had a (free) half-hour consultation on the phone with a (very expensive) learning assessment specialist. After I described Jordan's behaviors and performance to her, she asked me some surprising questions, such as: "Do you see any bottom-to-top letter formation?" Why yes, we do, actually, and how did you know that? "You said he had an odd pencil grip: is it a sort of a fist, with the thumb over the fingers?" Um, yes, it is, now that I think about it. These things, along with the general slowness and difficulty and illegibility and so on, suggests possible "dysgraphia," which I had never heard of. It’s the writing version of dyslexia. They often go together. The idea is that reading and writing are both complex processes in which you have ideas in language form, those language-ideas are translated into symbols like letters and phonemes and words, and then the hand and eyes have to produce those letters and words that go with the ideas. (Reading involves many of the same processes but reversed.) There can be difficulty at any one (or all) of those translation points. The weird pencil grip is a sign of difficulty with "grapho-motor function" (the mechanical process by which the hands direct the pencil to make the words), and then there is another technical term called "orthographic coding" for the part where you translate ideas into symbols.

(The theory of dyslexia and dysgraphia is that they are biologically-based disorders that have to do with disrupted neural connections among the different brain regions needed for writing (audio-visual, linguistic, and motor). I think this theory is based on observations of adults that have certain known kinds of brain damage displaying symptoms that remind them of kids with dyslexia, so they theorize that the kids have similar brain issues as the injured adults. My guess is that in fact we know very little about it. But I’m more than willing to learn the terminology that the psychologists, schools, etc use for the kinds of difficulties Jordan has, so that we can get them to help him out more effectively.)

Something I appreciated about this specialist was that she gave me a vivid sense of what it's like to read and write under these circumstances. Basically it's totally exhausting. You are working so hard to just coordinate your hand, or whatever, that whatever idea you were trying to write down is long gone. Like writing upside down with your left hand, or reading a scientific article in a foreign language. She said it's frustrating and tiring and "kids will do anything to avoid it." Classically, dyslexics have been often seen as lazy, because since they're perfectly likely to be smart, people thought they just lacked motivation. It seems kind of tragic to me, that kids who are exerting such painful effort would be seen as slackers. And now I wonder if we have been doing that to Jordan. What if writing is just as hard for him as he says it is?

Just on the basis of what we've observed, one option would be to just go straight to some interventions. Keyboarding can be good for some kids with problems like his, though others have just as bad a time with that as with anything else, if the difficulty is in the orthographic coding. The appropriate professionals are handwriting specialists and occupational therapists.

The next-level option would be to do targeted testing of his reading and writing abilities and achievement. This would assess him for dysgraphia and dyslexia and would inform recommendations for intervention. However, that kind of testing would not produce a diagnosis.

The most comprehensive testing would include not only reading and writing, but also cognitive function broadly speaking, including IQ, executive function, and I forget what else. This gives the fullest picture of what all is going on for him in the context of all of his abilities and also produces a diagnosis. This is valuable because it might affect what treatment people are willing to provide -- either the school system, or our insurance.

In any case, an important part of the package is to request that the school call a “student intervention team” (“SIT”) meeting. This is a meeting of the parents, the teacher, the principal, the school psychologist, the nurse, and the special ed teacher. The purpose of the meeting is to communicate about what’s going on for Jordan and plan possible interventions. The school may or may not have anything to offer at this stage (or any stage): though federal law requires them to provide “free and appropriate” education for all children with special needs, he may or may not meet their definition of having special needs, and even if they agree that he needs something they are very likely to be understaffed and under-resourced. However, it’s worth doing even if they don't offer anything: a meeting like this kind of opens a file on him, so that anything that happens later can then happen more efficiently.

Wednesday, April 3, 2013

Chocolate seder

We've been anticipating this chocolate seder for a week and a half! (We were going to have it earlier, but Jordan had a sick day that messed with the schedule.) Chocolate milk instead of wine; chocolate eggs; chocolate matzo; a Toblerone bar for the shankbone; instead of greens dipped in salt water, strawberries dipped in chocolate; instead of horseradish, shaved chocolate with cayenne; and for the charoset, chocolate chips and peanuts mixed into peanut butter. The children were agog.