Thursday, May 01, 2008

Feeling A Little Optimistic

From my last post, one might conclude that I’m feeling a bit pessimistic these days. Instead, I’m actually feeling a little optimistic. The reason is related to the Bear’s education.

Just to get the point out of the way, if anyone has an issue with IBI, my thoughts on the Bear’s program are here. Read this before you raise points about all the negative IBI practices that I’ve previously stated that our IBI provider does not follow.

Longer term, I’m still more than a little worried about the Bear’s education. The powers that be will probably try to boot her out of her IBI program when she reaches Grade One. IBI support does not automatically expire at this point, but rumour has it that the criteria become more stringent, as the intent is to hand over responsibility to the school boards. I’m also more than a little concerned with the possible direction that the School Board may want to take. They may want to move her to an ASD program in a different school. Our preference is to keep her local and part of the community, but that also depends on the local resources that are available (will there be an EA for the full day? One-on-one or shared?) and whether the educational opportunities will be better at another location. As well, what happens in the summer? Does the school have a program? If not, is funding available for other programs, or do we have to pay?

But for the short term, things are actually looking okay. I just had the regular IEP meeting with the IBI provider, and the Bear is making some progress. This year she rated on ABBLLS-R in nearly half the categories, vs. last year’s assessment, when she did not show up on the grid. She is also showing improvement in self-help skills, responding, some imitation, requesting, gross and fine motor skills, and social interaction. She can also match on identical and non-identical objects, pictures, and colours when she chooses to. So far so good. But the real optimism comes from the progress to date and the goals for the Bear’s communication abilities.

The Bear is non-verbal. She does make a variety of sounds, a couple of which have meaning, but they appear to be more mood related than specific words that are used to communicate with us. Despite the absence of speech, she does a reasonable job of letting us know what she wants, often by taking our hand and walking us to whatever she wants. including walking us over to sit down and play with her. She is also able to make choices when we present her with two or more options, e.g. juice vs. ‘(rice) milk’, or different DVDs to watch.

The Bear had also demonstrated an ability to use PECS to communicate. We used to use this at home, with a few different pictures. We stopped when the Bear destroyed the pictures through twisting, folding, and chewing them. Both JK and IBI were also using a small range of pictures, but with no formal program in place.

I started pressing earlier this year for the Bear to start learning the alphabet and numbers, so that we could start to teach her to read. I also expressed a desire to move towards acquiring a Communications device, so that we could begin to teach her how to communicate vocally/electronically. Unfortunately, you can’t just buy a device and put it in front of her (well you can, but….), or we would have done that long ago. She also needs to know how to use it, which requires some specialized teaching. Our issue was that we no longer had access to an SLP, having slipped between the gap between the 0 – pre-JK years (under the auspices of the local ASD support agency) and Grade One and up (the school board). We discussed it with our IBI provider, but they appeared interested but non-committal at the time, given the issues the Bear appeared to be having with matching (capable but no consistency). For obvious reasons, matching could be considered a pre-requisite for PECS Stage 3 (discriminating between pictures) and above. I knew that the Bear could match, having seen this skill demonstrated regularly, but she also needed to be consistent.

What a difference a couple of months have made. The IBI program altered their teaching slightly, and it turned out that the Bear’s ‘errors’ were in fact non-attempts and getting side-tracked in manipulating the pictures or objects rather than applying them. When motivated, she is quite capable of matching at will. IBI also increased their use of PECS after a bit of a hiatus, and the Bear showed that she was quite capable of communicating this way.

The other difference was Carly Fleischman. For those who have not heard of her, Carly is a 13 year old non-verbal girl with autism who has learned to communicate by typing words into a laptop that the machine then ‘speaks’. Just as importantly, Carly has demonstrated that you can’t judge the potential of autistics only by the capabilities and behaviours that can be readily seen. To my mind her major contribution has been to change perceptions – at least among those who are open minded - of what autistics are potentially capable of, given the right support, environment, and assistance. I have long thought of the Bear as another ‘Carly’ in the making, even before I knew that Carly existed. But Carly’s very public demonstration of the ability of autistics to think, understand, show emotion, and communicate (all of which should have been apparent - or at least not easily dismissed – by those who were paying attention) reinforced both my desire to push harder for a communications strategy for the Bear, and made it much easier to make the case to others – if they weren’t already starting to move in this direction in response to Carly’s example.

The net result is that a major part of the Bear’s learning is now focusing on communications. The IBI school has bought a Talk Board (pictures that ‘speak’ when pressed) to enable them to teach her how to use this. They are also working on strengthening the Bear’s PECS skills, and she is doing quite well. On Tuesday, in over 600 communications with multiple cards requiring discrimination she required only two prompts – both were related to the Bear wanting to turn on a video without first using the PECS card to request this. Given that she never had to use the card in the past, this was understandable, and once she knew the card was required, she adapted to that as well. Since then she has been progressing very quickly, traveling to communicate and communicating with the correct person in changing situations. The next step is to make a PECS binder that she will keep with her in JK and home, as well as at IBI. As this is mastered the Bear will be taught to use the Talk Board, and when she is ready we can transition to other technologies and a keyboard. In the meantime there will also be more emphasis on teaching her the alphabet and other skills to get her ready for this.

JK is also very much in alignment with using PECS. The Bear’s EA has had PECS training in the past, and has asked to visit the IBI school to see how they are using PECS with the Bear, in order to use the same techniques in JK. She is now enthusiastically waiting for the binder to start using it, as are we to use it at home.

Finally, another cause for optimism is how well the Bear is fitting in at school. For a while she was off on her own with the EAs for significant periods of time, duplicating a lot of the work that the IBI program was doing in the morning, and reducing her interaction with the other children in her class. The IBI program head did a site visit to the school, and recommended that the Bear be more fully integrated with the rest of the class, and the teacher and EAs agreed. The Bear is now more involved, and even has a couple of girls who are friendly and interact with her. When she is at the computer many of the other children apparently gravitate over to watch and take an interest in what she is doing. She has been well received by the school as a whole, and when the IBI head did her site visit she was very impressed with how much the rest of the school knew and regarded her – “They just love [the Bear]”. At different times she interacts with children from other grades in various activities, and everyone apparently knows and likes her. This to me is more good news, as one of the goals of having the Bear enrolled in JK was that she would fit in early and be accepted, rather than join the school later and potentially be perceived as an outsider.

So, there appears to be progress, we have a clear direction to follow and alignment among all concerned, and the Bear is already adapting well to the new focus. As such, I am feeling a bit more optimistic these days.