I’ve signed up to attend TACA‘s Special Education Law Day this Saturday, March 1. This is one area in which I definitely haven’t done enough research, but I want to feel prepared for and knowledgeable about Nate’s IEP process with the school district. I know we have the right to implement a special diet for him at the school, to be happy with and agree with the assessments they make of him, and to be satisfied with how they place him, but I want to know how to go about ensuring those things will happen. I’m really looking forward to the sessions on Saturday, and I will be sure to report back on what I learn.
I talked to a mom at the park today; we’ve seen each other there three or four times before and always speak. She has twin boys who are not yet two, and today she told me that one of them has been evaluated through regional center and is starting in-home ABA tomorrow. So of course we talked for a long time about it and Nate (I hadn’t mentioned his autism before, though I have no problem telling people about it, especially now that I am so proud of how far he has come). I told her briefly about the diet and also mentioned enzymes. I remember how completely overwhelming it was at first with Nate, so I don’t want to explode information all over her, but I think now she knows I’m here with information if she wants it.
Last week, I finished reading Seeing through new eyes: Changing the lives of children with autism, Asperger syndrome and other developmental disabilities through vision therapy by Melvin Kaplan. Dr. Van Dyke at the Rimland Center tipped us off to this book and the work this author/doctor does. I had never heard of anything like it.
Kaplan uses prism lenses (special glasses) and vision therapy to alter how people see and perceive their world. He posits that many “undesired” behaviors we see in autism — toe-walking, hand-flapping, dragging hands along walls, stimming, staring at spinning objects (like Nate does) — are children’s coping mechanisms, their “logical strategies for adapting to sensory disturbances” (p. 45). These children are “seeing” 20/20 but are not perceiving correctly. He writes that these behaviors are not the problem; they are the solution! They show us what is going wrong perceptually.
He writes that children’s toe-walking, stimming with their hands, touching walls when they move “stem from their inability to handle both themselves and space simultaneously. To orient themselves, they flap their hands or touch objects, providing sensory input that tells them where they are in space” (p. 18). Many people with autism have problems with orientation of self (where am I?) and/or organization of space (where is it?).
The purpose of ambient prism lenses is “to actually alter perception in ways that cause patients to reoganize their visual processes[…]. The behavioral changes caused by this alteration of perception often are instantaneous and dramatic. Patients with autism or related disabilities have spent a lifetime developing strategies to compensate for their visual deficits. By the time they arrive at the optometrist’s office, these strategies — eye turns, postural warps, self-stimulating behaviors, etc. — are habitual and ingrained. Ambient prism lenses instantly create a new visual world, in which those adaptive mechanisms are no longer either necessary or relevant. As a result, patients must rapidly re-awaken previously suppressed visual processes, in order to make sense of their altered surroundings” (p. 34). Kaplan believes that altering these patients’ perception can level the playing field in a way, making it possible for other therapies to be even more effective.
Kaplan includes many interesting and relevant case studies in addition to descriptions of the tests he uses in his practice (including tests for non-verbal patients).
This book was a page turner for me, not only because I found the case studies so interesting, but also because I saw so many children I know reflected in the pages. I see many children at Nate’s therapy center walking on their toes while dragging one hand along a wall while a therapist leads them by the other hand. Though I’ve read of other explanations of some of the behaviors (e.g., toe-walking is the body’s response to painful GI tract problems), many of Kaplan’s explanations really resonated with me.
I’m not sure if Nate is an excellent candidate for vision therapy, as he doesn’t display some of the markers Kaplan mentions multiple times. Nate doesn’t toe walk. He doesn’t drag his hands along walls. He doesn’t flap his hands regularly. However, here are the tidbits in the book I did highlight that describe Nate:
“[Individuals with autism] display a fetish for numbers and letters, as well as spinning objects […]. Higher visual development, in contrast, involves smooth eye movements and visual search patterns. The autistic pattern is marked by static attention, which is unsustainable, where the latter involves dynamic attention and is sustainable. Dynamic attention requires a concentration of internal energy, and patients who cannot coordinate their eyes are unable to achieve this level of concentration” (p. 55).
“Sometimes children will be comfortable watching certain sections of a video, but cover their ears, scream, or turn their eyes away during other sections. Such behaviors provide valuable insights into the type and amount of visual and sensory input a patient is capable of handling” (p. 61).
There are other times when Nate seems to completely zone out/stare into space when a question is asked, and I’ve often interpreted it as sensory overload, which may include visual/perceptual components.
I plan on recommending this book to anyone who asks for my “long list” of autism treatment information.
We’ve been giving Nate the at-home methyl-B12 shots for two weeks now. His sleep is back to acceptable levels (not great, but acceptable)–he’s going to bed at a regular 8:00 and getting up usually between 6:00 and 7:00, with night wakings still common. We put a gate on his door, which is helping.
At the end of every day this past week (Monday-Friday), I sat down and thought, “Wow, today was a pretty good day.” No major meltdowns, generally good cooperation, good language. Nate has also started asking a few questions in the last week to 10 days, including, “Who it is?” when I answered the door and he couldn’t see who it was, and “Mama, where are you?” a couple of times (he seemed to be saying that one more to himself than actually calling out to me, but still, it’s a great step). He has never asked questions before.
In general, Nate just looks healthier: his complexion is smoother and brighter, and the bumps on his legs are better. I attribute these changes to the diet but also recognize that m-B12 could be contributing.
The actual shot-giving is not too fun. It requires two of us (one to hold down, one to give), and Nate doesn’t like it at all. He still cried this last time, but he didn’t act like the shot hurt him, so that’s good. I’m planning on asking the doctor this week for some EMLA (numbing) cream.
Overall, I’m pleased with the lessening of bad side effects and am excited to see what other positive changes occur.
I wasn’t going to post about this, but I’ve been thinking about it all morning, so I’m at least going to write about it and then might or might not publish the post.
Last night, I went early to our Cubbies classroom at church to set up for AWANA. The school teacher was still in there, so she and I talked while I set up. I had Nate and Lucy with me, so Lucy sat in the stroller and I set up some crayons and coloring sheet to occupy Nate. (It was quite cute: the sheet was a picture of Noah and the ark, and after I told Nate that, he started singing the “Who built the ark?” song, which we haven’t sung together in some time.)
Nate’s autism came up. The first thing the teacher said was, “Oh, I had two boys in my class last year with autism,” and she raised her eyebrows and cocked her head in an expression of “can you believe that? Just my terrible luck.” She talked about how some days were OK, but other times one or both of the boys would just be unmanageable, and she’d “finally just have to send one home.”
I’m sure I’m a little hyper-sensitive right now as I’m running on way less sleep than I need, but still, come on lady! I’m a mom to one of those boys!
My first thought was, “Well, I just hope Nate doesn’t end up with a teacher like her one day.” But he probably will. I’d like to prepare myself for it now, not be blindsided or shocked when it happens. Even teachers who may end up loving Nate would not choose to have “someone like him” in their classrooms, because it means more work for them. And when they read the piece of paper that says they’re teaching a boy with autism this year, they don’t see the cute, funny, aiming to please, smart boy they’ll be teaching; they see a piece of paper, words, AUTISM.
Just like many parents begin praying for their children’s future spouses years ahead of time, I can begin praying for Nate’s future teachers–that God would prepare their hearts and pave the way for Nate, placing him in the right classrooms with the right teachers and classmates.
There, I feel better! 🙂