After months and months of referrals and evaluations and paperwork and phone calls and meetings, we finally have some more information about what’s going on with Eleanor. Back in the beginning of summer we started working under a presumption of dyslexia being the cause of her challenges with learning to read. I took her to an occupational therapist who found she had deficits with certain left-right brain communication areas and something called “visual closure.” That’s the part of the brain that sees part of something (a shape, a letter, an object, etc) and fills in the missing information to tell you what the whole thing is even though you can only see part of it.
I spent the better part of the summer getting Eleanor’s paperwork sent in for Idaho’s Katie Beckett medicaid, only to receive back a denial of coverage last month. You need one of a very few diagnoses to qualify, and Ellie doesn’t have that. Which means no medicaid coverage to help us with ongoing occupational therapy.
I also marched into the elementary school on the first day the office opened in August and handed them a written request (okay, demand) for them to evaluate Eleanor for a learning disability and possible IEP. We met to discuss it in the beginning of September, and they spent the last two months putting her through a gamut of tests. Last Friday I sat down with the entire team (teacher, principal, psychologist, occupational therapist, school counselor, and another woman whose roll is unclear to me) to hear the results of all those evaluations. In short, Eleanor does not qualify for an IEP because her IQ is too high. Her reading scores show a lot of difficulty, and she’s “at risk” in some social-emotional areas but her IQ, her math abilities, her everything else fall in the “normal” range (because “normal” is defined as falling anywhere from the 16th percentile to the 84th percentile, which is a really wide range if you ask me). The one big outlier was that the school OT found the same thing that the previous OT had: Ellie has significant difficulties with visual closure. She found this really odd because those deficits are usually associated with deficits in other areas as well; she has never treated a kid with only visual closure issues.
The visual closure issues are likely what is behind Ellie’s difficulties with learning to read. She sees things as “parts” not “wholes.” For example, when trying to read a word, she is still stuck at sounding out each individual letter (the “parts”) and not seeing the word as a whole. When writing, she is thinking, “the letter N, the letter I, the letter G, the letter H, the letter T” instead of thinking “I’m writing the word NIGHT.” Her brain just isn’t putting the parts together to create a whole. She seems to do okay with math because it is more procedural. Two and two always equals four. She can just memorize that and move on, whereas with words there are an infinite number of letter combinations that can create an infinite number of words. She has some sight words, but she can’t just memorize every word that she ever sees. She has to find a way to make her brain see all the letters together and read them as a word.
On the plus side, the entire team agreed that, while Ellie looks fine on paper, they can also see that she is struggling. So we will be implementing a 504 plan for her. The OT is going to do some research into specific ways to help with visual closure and spend the next couple months seeing what works for Ellie. In January we’ll meet again to formalize a 504 plan with interventions that work. That way, when Ellie moves to third grade next year, she’ll already have in place the paperwork telling her new teacher what she needs. We won’t be starting over from square one again.
In the meantime, Eleanor has actually made some noticeable progress recently. We’ve been having her start over with the kindergarten curriculum of Handwriting Without Tears to learn to write her letters properly. I’m very strict with her about writing them all exactly right (close the top of every “a,” make your “f” and “t” and “d” the right height, make “p” and “q” and “g” go far enough below the line, etc) with the hope that building the muscle memory in forming the letters will help make writing easier in the future, and possibly help train her brain the recognize the letters easier. It’s slow progress, but it’s there.
For her part, Eleanor remains one-hundred percent committed to putting forth her best effort and attaining that goal of learning to read. She wants it so badly, and never gives up. I’ve told her what we know about why she’s struggling. I feel very strongly that she has a right to information about her own body, and I want her to know that she’s not stupid. Far from it. She’s facing challenges other kids don’t, challenges she has no control over, and she’s making progress. She is incredible, and I tell her that often.