Tuesday, July 31, 2007

People Make The Difference

This year will see some significant changes in the life of the Bear. She will be entering Junior Kindergarten in September, and June saw some activity associated with preparation for that event. The same month also saw the Bear reach the top of the waiting list for IBI funding from the provincial government. Either of these events could have gone well or not so well. But fortunately, good people have made a difference.

I'm looking forward to the Bear starting JK in September. The school has been good so far. The Bear and I had a meeting in early June with the principal and ASD coordinator. She didn’t get her own EA (there are two other ASD children and two EAs already - a lot for a small school that only goes up to grade 5), but they had arranged to front-load the other two children with EA-assisted activities in the morning and more inclusive activities in the afternoon, so that one of the EAs should always be available to work with her. I actually quite like this solution, as it reduces the risk that she becomes too dependent on one person. The principal and ASD coordinator also both later indicated - I asked - that responsibility for educating the Bear resided with the teacher, rather than the EAs, who are there to assist. This reduces the risk that the teacher and EAs each think it is the job of the other to educate my daughter. The Bear’s Kindergarten teacher is a former SpecEd teacher, so this too bodes well.

Plus, the school takes a very inclusive approach, where possible. As well as favouring integration in the classroom, when appropriate, they buddy-up special needs children with peers and older children. My neighbour’s children used to attend the school - the youngest one just finished there in June. She had earlier told me about this, saying that she played with one of the other ASD kids at recess, etc. The ASD coordinator was quite clear in describing the buddying-up that in selecting the children they were not looking for ‘little mothers’. Instead, they wanted to help the ASD children to fit in and find support.

After the meeting the ASD coordinator took the Bear and I for a tour of the school. At one point we walked into a Kindergarten class, and stood at the back. The teacher and children were in a circle on the floor, reading and acting out scenes from a book. The Bear took a quick look around, and then walked over and sat down in the circle with the other kids. I knew she was in the right place.

In the week following our visit the ASD coordinator conducted a workshop for the Kindergarten teacher and EAs. Afterwards the teacher called me to introduce herself and asked for permission for her and then the two EAs to visit the Bear at her IBI program, to see what she was doing there and to establish a connection with the IBI school. I thought this was pretty cool (no, actually I was flabbergasted - they actually approached the principal and volunteered to do this). They even sent the IBI program a thank-you card afterward.

The Bear handled her Kindergarten Orientation quite well too, despite it being considerably more lively than the classroom that we had visited earlier. One of the other parents came over during the orientation and noted that the Bear was handling the class and the noise very well. "Um, yes. (pause) Er, do you know that she has autism?" I asked. It turned out that the parent was an OT. Unfortunately, her son will be in the morning session – the Bear will be in the afternoon – so they won't be together until Grade 1. Still, a child with a parent who 'gets it' is not a bad thing. The OT parent also went over and spent some time with the Bear, which was nice. The other parents also seemed okay. A couple of parents said hi in the parking lot afterward, and no one appeared to act 'funny' about having an ASD kid in their child's class. I was (am) a bit worried that some parents might fear that the Bear will be disruptive, or that any negativity on the parents’ part might rub off on their kids, but I didn't perceive any issues.

The ASD coordinator and principal have also continued to try to help out. As well as conducting the workshop, they're trying to get the school bus to pick the Bear up at IBI (which would save me about two hours of traveling each day, going from work to IBI to home/school and back to work). So far they're having no luck with this (officially, the IBI school is "out of area"), but they're still trying, and they volunteered to do this - I didn't ask. They also made the Bear an orientation video welcoming her to the school (which unfortunately is locked up until mid-August, since the school had closed for the summer about half hour before I could pick it up, and the remaining teacher and caretaker could not find it).

Overall, while we (parents) are still a bit nervous, we’re quite looking forward to the start of the school year.

The other big news for us is that we now have IBI funding from the provincial government. That saves us a lot (I mean a lot) of money per year, and also adds some hours to the IBI program each week (now officially 21, vs. 15 before). The Bear will continue with IBI in the morning, attending Kindergarten in the afternoon. Both are supposed to be 'fun' (our IBI is not doctrinaire ABA), so hopefully she'll be able to handle the hours (6+ per day in total, plus traveling time). We'll have to monitor this carefully, but the Bear has a great disposition and actually likes/craves novelty and stimulation, so hopefully she'll be able to handle both.

What was especially nice was that the staff at the Ministry of Children and Youth Services (MCYS) went out of their way to be helpful. In an earlier post I lamented that funding required either the Direct Service Option (DSO), which was totally funded, but required the Bear had to be available from 9 to 5 every day, i.e. forgoing Kindergarten, or the Direct Funding Option (DFO), in which we received funding at the rate of $36 per hour (now $39) to select our own IBI provider, but the result would be a balance of approximately $20,000 per year that we would still have to pay ourselves. I explained this to the Program Supervisor from the MCYS while we were discussing the options. I indicated that we would probably prefer the DFO option because we wanted the Bear to go to Kindergarten, but that in effect this turned (public) Kindergarten into private school, since we had to pay a significant amount for the privilege of sending her there.

Later the same afternoon I phoned the Program Supervisor back with a couple of questions. She indicated that she and some of the others at the Ministry had been discussing our case, and that they would see what they could do. What they ultimately did was to negotiate changes with the current DSO provider, another local ASD support agency, and our IBI provider to get us both full coverage and the ability to send the Bear to Kindergarten. On their own initiative, without any prompting from me, the people at the MCYS ‘made it happen’, and probably at less cost than that had we selected the original DSO option.

Obviously we have been very lucky with the way that both Kindergarten and funding have worked out so far, and are also very appreciative. In both cases we have been fortunate to have dealt with people who have gone out of their way to help. I’ve read of many difficult encounters that parents of children with ASD have faced with school boards and securing government funding. In two recent examples, Shawn wrote about bullying by school administrators, and Wade Rankin wrote about the issues another family faced with their school district over a communications device. Some of these issues may be bureaucratic in origin, but even in bureaucracies - in the most pejorative sense of that word - people can sometimes find some room for discretion and maneuver, if they really search for it. Sometimes there is also an ability to cause changes to the rules if they cannot.

In our case it is good people who have made the difference.