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.


kyra said...

i am SO GLAD to read all this. it's so exciting to hear about the bear getting closer to learning how to use the devices that will one day give her a way to communicate her thoughts, feelings, ideas, and plans and anything else she has to 'say' which, i'm quite sure, is A LOT.

Wade Rankin said...

Struggles with school officials seem to be the same on both sides of the border. When our kids improve in spite of the schools, the educational administrators will take credit, and then say that help and accomodations are no longer needed. Fortunately, the Bear has parents who are up to the task and the fight.

rm said...

Hearing about the Bear's emerging abilities (especially in communication) gives me that warm fuzzy glow. My little one is only 18 months and was diagnosed with ASD 3 months ago. I know she has skills she can't demonstrate consistently, but I see flashes of them from time to time. I am hoping she will pick up the sign language that we have been teaching her for the past month. Too early to know if she will be verbal. Have you used any sign with the Bear? And did you use an ABA approach primarily? We are working with Floortime at the moment.

Ian Parker said...

Hi Kyra, Wade, and RM,

Thanks all for stopping by and your comments. Kyra, we are definitely expecting that the Bear will be successful with this, and I fully expect that she will be quite 'vocal'. I can hardly wait.

Wade, I really hope that the school system is cooperative, but I'm not overly optimistic. Our local school and the staff have been great, but they operate in the same budgetary environment as everyone else, and school boards are being squeezed and squeezing in return. Our school has already lost a teacher next year, and I'm worried about whether it will be able to keep the two EAs. At some point they may consider it easier to move the Bear than the EAs, regardless of what is best for her (sigh).

Hi RM, I'm glad that you have taken some comfort from this. If there's one thing I can say so far on the Bear's journey, it is that our children are constantly underestimated and are capable of far more than anyone gives them credit for.

We never taught the Bear any sign language, but I know that JK and IBI have at different times tried to teach some signs. Unfortunately we did not know that she was signing - e.g. we thought her 'more' (she has it half right, tapping the other palm) was a stim (stupid parents). While not all ASD kids have the fine motor skills required for signing, I take the view that all communication is good communication, and if it works for your daughter then great!

Regarding approaches, the Bear has been in IBI since she was 23 months old, but she has been doing more there than just ABA. At home we didn't do any formal ABA, but we did focus on trying to build communications skills (I recommend the Hanen Centre's More Than Words), as well as keeping her engaged, interested, entertained, and constantly interacting. If you take the view that a lot of autistic 'behaviour issues' may be related to the frustrations of being unable to communicate, then this approach may lead to a happier and cooperative Bear.

We also took the approach that the Bear had to get out into the world, and we take her everywhere. How can a child learn unless they get to go out and experience things? I also think that this can have a positive effect in terms of societal acceptance. This works for us as the Bear is very well behaved and is a sensory seeker, but I readily admit that it may be significantly more challenging for those with children who are sensory avoiders.

farmwifetwo said...

"your child will be a failure if you don't do what we tell you".

I still HATE those people... they still make me edgy and upset when I think about them.

My 6yr old is still severe, non-verbal. His PEC's are only used now when he's upset and he is now able to communicate that "upset" to his EA/Teacher. He takes part in carpet time, special helper day (read them "Russell the Sheep" last week for his turn), puts his hand up to take his turn. Uses Writing w/ Symbols (bought a copy for the house) for his journal entries and anything over a couple of words or math. He is learning to keyboard correctly. Uses the PICS from W w/ S to answer reading comp/science/social studies questions. EA leaves him a bunch of PICS he sorts and glues the answer to the question. Spell's 28/30 at their mth end test, independant w/ his weighted pencil. Reading, math (uses counters), spelling all at a Gr 1 level.

Speech, delayed only talks if he wishes or needs. Comprehension delayed but jumping quickly.

Edmark Exercises level 1 we have started - reading comp, his decoding is Gr 2 level. I thought it would be better to start at the beginning. Will finish over the summer and start Level 2 in the fall.

His school OT is AMAZING. He only gets consult for speech this year - b/c the school board put a speech teacher not an SLP into the school. So I purchased private speech $50/30min, every other Wed and she comes here.

He was very upset to see her (started in Jan). For 3 sessions wouldn't let me leave the table when they were working. She does "work" for 15min and then they play a game for the rest - turn taking, situation (in, out, before etc) and conversation. She inserted "work" in the middle of the game the 2nd week she was here and he shut down. Didn't freak, just shut down. I told her "that's an IBI trick", she knows about IBI and that mess... she's never done it again.

He loves her now, she's WONDERFUL. But he should never have been suspicious of her... I still haven't forgiven those Therapists for making him suspicious like that.

He's also routine toilet trained. Either the EA or I have to put him on the toilet at regular intervals. We've now gone 2 weeks without a pull-up except at night-time. We only use them for long trips or long outings, b/c except for gymnastics (Sat afternoons) we haven't mastered public bathrooms.

When done correctly a child with ASD will thrive. It hasn't been a smooth trip through the school system but, it's better than most and he will remain mainstreamed.

We went to the Butterfly Conservatory on Fri... pulled both kids out of school. Eldest is another mess, but I got the rest of the psychometric testing (July - school board)... this crap should be easy but it's always a fight.

Stand up for yourself... she'll be fine.

Shawn said...

Hi Ian,

I'm glad to hear of the optimism. For SJ, kindergarten set the stage for the rest of elementary school (so far). One of the positive things about kindergarten is that other children are so much more supportive, and non-judgmental than they are when they get older. It's great to build a foundation with peers at this age. It would be good to be able to stay with the same students, but there's lots of other factors and a move to a different school may be best.

I read your last post and can relate. In addition to the family challenges, I'm just coming off a huge 24 month project that first got underway three years ago. And it's never done!

Good to hear from hou

Ian Parker said...

Hi Farmwifetwo and Shawn,

A belated thanks for stopping by.

Farmwifetwo, glad to hear that your youngest is doing well. Re: "When done correctly a child with ASD will thrive.", I couldn't agree more. I wish more people would see things that way.

Shawn, I also agree with your comment about Kindergarten kids, although all the kids in the Bear's school appear to be quite supportive. It probably has something to do with being in a small and tight knit community, of which the Bear is seen as being a part. I would love for the Bear to be able to stay with the same group throughout her school years, but you're right that we will have to weigh what is best for her.

I love the "I'm just coming off a huge 24 month project that first got underway three years ago" comment. ;-) I definitely know how that works.