Knowing what he knows

Recently, we had a parent-teacher conference for Elias. It was a good meeting since Elias has been exhibiting some very encouraging progress as I've documented in snippets both here and on Facebook (as well as in person if I've seen you recently!). One thing that I said at the very end of the meeting was that it was difficult for me to know what he knows and what he doesn't know, which is a common difficulty among those parents who have children with communication deficits. With my other two it was easy because they never stop talking; with him it's clear to me that he knows exponentially more than he can communicate, which is seen through his receptive language but also every once in awhile it will come out when we least expect it. Case in point: on the way home from this very same conference, we were stopped at a stop sign and Elias said "O. Octagon. O. Octopus." Yes, indeed.

However, it makes me question at what level I should be teaching him and at what level he's comprehending what I'm teaching him. One of the blogs I follow (and subsequently FB page), Rhemashope, posted a link to this story with video about this method called Rapid Prompting Method, or RPM. Here's a link to the article and the video, which is well worth the 9 minutes it takes to watch it.

This video profiles two 12-year old non-speaking autistic kids who have learned RPM and are now able to type their words onto an assistive technology device that will then speak for them. Around 5:15 in the video they talk about how Kaylie's special needs school that specialized in ABA was "teaching" them where their nose was on their face and wanting them to touch it over and over again. Kaylie's mom talks about how Kaylie was frustrated by that lesson and typed to them "Nose not hard to find." This segment is so eye-opening to me about how we treat and teach disabled children by making assumptions that they are not paying attention or able to learn when in reality many of them are soaking information in like a sponge.

The scenario that Kaylie was in is my nightmare for Elias, that his IEP and instructors will expect very little from him because according to their evaluation metrics, he is not complying with what they want him to do. I have seen this over and over again in the number of evaluations he's had to endure. The person evaluating him will ask him to do something and he won't do it, so they will check "No" or whatever the lowest metric is on their evaluation tool and he will score low for that particular criteria. For example, he has been diagnosed with an expressive-receptive speech delay. I disagree with the receptive speech delay diagnosis because I know that he understands almost everything I say that is directed towards him and probably much that isn't. I sit in on his speech therapy sessions every Thursday afternoon and last week his therapist wanted him to point to the heart shape out of three other shapes. He refused to do it and continued playing with the Play-Doh. I 100% know that he knows what a heart shape is. I believe that he just had no interest in pointing it out and therefore didn't, but from a diagnostic standpoint, since he didn't show comprehension they have to assume that he doesn't know what a heart shape is. I completely understand why they do that because that's the way the practice is structured. I do wonder if there should be a better tool that reflects the autistic experience.

I want to teach Elias. It's hard when he is wandering around or scribbling all over a paper that I am trying to use to help him write the alphabet. Another illustration of this is yesterday: Chris, Ben & I were playing a game and he was sitting on my lap throwing cards around (per usual). To keep him busy (and not messing up our game), I gave him a piece of paper to write on. He was scribbling, but then I wrote an E and told him to trace it. Well, he didn't trace it and he wrote this completely independently while saying each letter as he wrote it:

I tried to get him to do it again on another piece of paper and he needed hand-over-hand assistance from me and it still didn't look as good as this one.

At this point, I don't really have a game plan for teaching him. I am just going to continue to talk to him and read to him and point things out in the environment and just wait for his expressive language to catch up. But I'm also going to make sure as we move forward that we are able to get him the education that he deserves in a school with teachers and administrators who believe that he is capable of learning and that he has potential just like any other child.