"Cherish your visions and your dreams as they are the children of your soul, the blueprints of your ultimate achievements."
~ Napoleon Hill

Thursday, September 30, 2010

If I Had My Druthers ...

A bit of a personal missive this evening - some of my readers will know that I have two children with special needs.  Two teenage children, to be exact.  My oldest daughter has a laundry list of labels and diagnoses - mentally challenged, PPD, speech/language disorder ... none of which accurately describe her - and my youngest has a learning disability.

As I walked out of my oldest daughter's IPP meeting today and into the bright sunshine, it struck me that many days it really doesn't seem to matter how much or how well you think you know the law or which government entity is responsible for this or that - creating something meaningful and functional for our children seems nearly an impossibility.  The key words here are, of course, meaningful and functional.

It I had my druthers, Nova Scotia's Canada's education law would be very similar to that in the US.  We would have legislation similar to IDEA (Individuals with Disabilities Education Act) - which, admittedly, would be somewhat difficult given that IDEA is a federal law whereas, in Canada, education is a provincial responsibility - which actually had some teeth in it, which actually gave parents meaningful rights and a process to challenge a school or school board's actions (or inaction). 

Yes, that's what we would have as opposed to the current namby pamby wishy washy excuse we have for legislation - legislation which uses much of the language in IDEA (such as guaranteeing our children an "appropriate education") but lacks both the process and the teeth to back it up.

I have definitely discovered that high school is a whole new ball game when it comes to IPPs.  From everything from the way they are created to the way they are reviewed and implemented, it is, quite simply, different.  And much harder, from a parent's point of view (or at least from my point of view) to meaningfully participate, to offer meaningful input that is actually included in the IPP and to get information as to how well the goals, once they are finally created, are (or are not) being met (and no, I don't mean the pathetic excuse for "reporting" that is passed off as report cards).

Although it took a long time for IDEA (as it exists today) to emerge, it also took a lot of parental involvement and advocacy.  And I can't help but think that's the only thing that is going to move Canada's educational systems for children with special needs forward.

In the meantime, I suppose we will all just keep putting one foot in front of another.  And keep hoping that somehow, through it all, we can manage to actually obtain an appropriate education for our children.

There's only one problem with that, of course.

Hope isn't actually a strategy.


david said...

We have a 4 year old son with autism and a 2 year old with ADHD. Both boys are not potty trained. They both have a tendency to disrobe and worse yet they play in their poop! We invented a sleeper that zips in the back and keeps them out of their diaper. www.ikidsfashion.com Thanks a lot!

mendenise said...

I feel for you. Our son just started grade 10 (you may remember my questions about IPP French last year). Because we knew that he would not be able to navigate the system at our local high school without help, and because toward the end of grade nine a notice came home in his backpack explaining that whether or not the resource teacher applied for him to have learning center time it would only be given on a first come first served basis and not every child would get it, and because way back in grade eight we were told on the sly that if he wanted to take academic courses he would not get EA support in high school ("it's not right but that's the way it is" was the gist), and because we couldn't bear to have him sit at the back of the room doing nothing for another year while the part time EA support that he did have told him they weren't going to baby him (meaning, in his case, help him), we decided to apply to Bridgeway Academy. He started in September. It bothers me only because it doesn't solve the bigger problem. But it does give him a chance, and he deserves that. For that reason I wish I had done it two years ago when Bridgeway came to Truro. I just wish he could take all the other differently abled kids with him.

So you can see I am torn about our decision but I agree wholeheartedly that a large number of parents' voices make waves. Didn't I hear that legislation had been passed to allow class action lawsuits in Nova Scotia?

MMC said...

Passed in December, 2007, it was proclaimed (came into force) in June of 2008 so it's actually been around for a little while now.

The trouble with the Class Proceedings Act though is that not only do all of the represented class have to have an action against the same defendant(s) - which pretty much means your class could only include students under the jurisdiction of the same school board - but, given the diversity of our kids' needs and situations, it makes it a little more difficult to craft a good cause of action.

Not that it couldn't be done (and not that I'm not very happy to finally see Nova Scotia get this legislation because I really am) but it just makes it a little more challenging. Then there's also that whole finding one (or two) families willing to take the plunge thing, which really (in this province) is no small matter.

You're very lucky you could afford Bridgeway for your son. I really hope he does well there. And that's a dilemna many families face - do I take the step that I think will help my own child or am I suppose to hold out/fight for something better for everyone else? I try to see it that everything I do to help someone else, I am doing to help my own kids and everything I do for my own kids, I'm also doing to help everyone else. It's a tough place to be, though, no doubt about it.

mendenise said...

It's true the kids needs are diverse. I think sometimes parents get divided by that. I have had parents upset with me because in my advocacy for my son they have somehow come to believe that their child would not get help - that I had somehow taken it all.

What if the action were simply that the children regressed? I was told a long time ago that my son may not actually be moving backward in terms of skills but because other children his age were moving forward far more quickly than he was, he was actually considered to be regressing.

When our son hit the end of grade four we finally called an attorney. We had no choice. The school was presenting a service plan to us as an alternative to suspending him (after telling me for months that everything was going very well). They actually wrote us a letter spelling it out. They gave up the idea (put it on the back burner really) for a while but it surfaced again in grade six and he went part days for two years (with no medical- or legal - reason). I insisted in grade eight that he start attending full time but his support was never increased to accomodate the extra hours. His anxiety increased and he started missing time because of this. The school felt he wasn't doing well (because he was missing time) and although a number of very qualified (saviours to us really!) doctors went out of their way to help them, they weren't able to comprehend the situation. When we decided to apply for tuition support I had never felt so defeated about his education before.

We really didn't afford Bridgeway. There is tuition support, which this year was 7100.00$ (allocation for per pupil funding) plus we qualified for supplemental funding from the dear old Dept of Ed. Out of pocket for us will be around 1800.00$ which is about half what we ended up paying for a reading program for him in Grade one, and a lot less than hockey I think. I know money is supposed to be a taboo but I wish I had known about this before.