Take action

So, I seem to get some amount of traffic on this blog. I'm not sure who comes to this site or if they actually read what I post, but in a sense of optimism I've added a widget in the top right corner that lets anyone who is interested follow a link to a petition on Change.org

As actions come and go I'll change the widget, but for now it has to do with restoring fairness to IDEA funding. If a parent is in conflict with a school system and has to go all the way to court there are a lot of expenses that they will incur. One is the cost of expert witnesses - for example speech assessments followed by testimony on the results. The bill in question specifies that the school system is responsible for these costs.

We've never had to go to court to get the special one a Free Appropriate Public Education, but we have had some disagreements and we have paid out of pocket for some tests and reports to back our argument. I'm happy that we could manage the finances of doing this, but it seems unfair to make having this amount of money a requirement for getting your child a decent education.

Question

With school out it's ESY time for those of us with special needs kids in school systems. Looking around the aut-rent blogs on the web I can see that I'm not alone in feeling that ESY services are a little thin and that it's up to creative parenting, finding money and juggling to make something that will keep my special one together (i.e. "not regressing" as they say in IEP lingo) over the break.

My question is this - why are the rights and services and accommodations that were worked for over the school year, suddenly up for renegotiation (or actually thrown out the window) when it's the month of June?

I realize there are different teachers involved, but it is the same school system. If over the school year the definition of least restrictive placement is full inclusion with typical peers you would think the same thing would be true in the summer. If the team thinks that more than a week without structured activities would be a problem, you'd hopethat the idea of only four weeks out of ten for ESY would not be an option.

I know that across the US that poor ESY is the norm and honestly I haven't found anyone talking about a school system supporting a kid in the summer in the same way they do in the school year. All the blog posts (here, here and here for example) are about figuring out how to fight for ESY or how to manage on your own with creative solutions and they are inspiring. My question is more about why are we left so on our own over the summer and why is the law, that really doesn't differentiate between school year and summer, being so totally ignored.

I'd love to tell you in detail about the faceless bureaucrat at school headquarters who explained to me that he/she could figure out what's appropriate for my kid without ever talking to anyone on our IEP team (much less me), based unilaterally on what the system has done in the past and the funding they now have and an unstated feeling that IEP kids can't be included with "normal" kids over the summer. As cleansing as that story would be for me, I understand that names and details are things I don't put up on this blog. Let me just say that I couldn't tell the story without nasty words and anger to the point of tears on my part.

These were problems we didn't face when we were in a much more restrictive (and costly to the system by the way) full year program. If we didn't have the resources to manage our creative summer plans I'm not sure that it wouldn't be a better idea to switch back to that setting. Regardless, we have the resources and we'll manage, but that doesn't make it any less messed up as far as I'm concerned.

Calendar review = panic attack

Agenda output from Google Calendar:

Wed:
Meet #2 at school #2 @ 4:50 (leave work early)
Awards ceremony @ 5:00
Take #2 home for dinner with #1 & #3
Meet hubbie at school #3 for volunteer award dinner @ 6:30

Thurs:
Hubbie picks up child #2 and take to school #1
Hubbie @ school #1 for SFC meeting @3:30
Rush home to clean @ 5:00 (leave work on time)
Meet #3 and autism workers and hubbie @ 5:30 for monthly meeting
Go shopping for 3x birthday presents
Take #2 to Urgent care clinic for “surprise” earache
Pack #3’s bag for camping trip

Fri:
Training session for 3 new hires @ work 10:00 – 2:00
Hubbie on field trip then camping trip with #3
Rush home to take #1 to movie theatre B-day party @ 4:00 (leave work early)
Go to grocery store for supplies for bake sale items
Dinner with still sick #2
Bake brownies etc for bake sale
Pick up #1 at B-day party @ 9:00

Sat:
Take #1 to SAT II @ 7:30
Take #1 home to pick up bake sale goods & go to carwash bake sale @ 10:00
Go home to pick up now recovering #2 to take to D&D @ 1:00 - 3:30
#1 & #2 go to sleepover B-day party @ 3:30
Meet #3 and get bathing suits on @ 5:30
Go to Swimming B-day party with #3 @ 6:00 - 8:30

Please tell me school is almost over...