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I feel like I am in an episode of “24” and the clock is ticking, just not in a good way

March 10, 2009

Editors note – if this post feels a bit confusing, it’s because you don’t have a special needs kid. Sorry to use the lingo without a lot of translation.

I thought we were getting a head start on the search for IT Boy’s preschool.  He’s transitioning from an EI only program where he ages out at 3 years, to a CPSE administered program that runs from ages 3-5.

Since he has a September birthday, we are entitled to start the process when his paperwork goes to our school district, which was supposed to be late this month.  However, when you are looking to start a program in September, that feels awfully late, doesn’t it?  I decided to self refer him into CPSE, which is legit, and start the process a bit early.

It really bugs me that kids with birthdays from Jan to August can start their transition planning months earlier, and can obstensibly get into programs that kids with birthdays that fall between September and December might get shut out of.  But I’m dealing with it.

When we went for our meeting with our CPSE chair, I thought Mr IT and I would totally freak out when he heard there might not be openings in some programs.  “But you (meaning me) said we WERE starting early!!”   Well, we were, it’s just how the system works.  Thankfully, our chair is aware of the system and truly wants to help us navigate it in order to find what will work for the Boy.

So I saw my first school today.  They offer tours in groups where you see the facility and observe, however briefly, the classrooms.  It’s a program that has mostly kids with language and developmental delays, like the boy.  They have inclusion classes and self contained classes.

I was struck by a number of things.  First, most of the parents there really wanted inclusion classes.  I certainly don’t know their kids, but when they told me the schools that they were at and the programs they were in, it seemed the wrong move for the kids.  One mom has her kid in a heavy ABA based program – no way could that kid go right into an inclusion class and not be lost.  I know with IT Boy that he needs a lot of support, so I’m looking for a smaller self-contained class – better to help him when he needs it.  If he makes progress, I’m happy to look at putting him in inclusion.  Later.  Not now.

Second, some parents come into this process with unrealistic expectations.  My favorite was the parent saying that he wanted his kid to go only 2 days a week, because she was in a nursery school they really liked.  The woman giving the tour was a bit perplexed.  She said they could send the girl 2 days a week, but that would be a private (aka YOU pay) program rather than a state-funded one.  So the dad then asked if they could get the CPSE program, but then only send her 2 days a week.  Oh yeah, be sure to do that so you can take a space from a kid who really needs it.  Either they are in denial about their kid’s condition, or they fell into a diagnosis and don’t know what to do with it.  I certainly hope that someone sits them down and talks to them straight about how the system works – methinks they could use the info!

Third, everyone keeps asking me if we have a diagnosis.  Outside of hypotonia, we do not.  I wonder if some parents secretly think I’m milking the system!  Doubt it, but it is hard to explain that there is a delay, without being able to say what caused it.

Most of the parents, me included, asked a bunch of questions.  Of course, she handed out a fact sheet at the beginning, so I started getting really pissy when people would ask questions that were already covered on the fact sheet.   I’m sure that’s also a function of “I’m not really sure WHAT to ask here” so maybe it’s to be expected.

Anyone have suggestions for thoughtful questions that I should be asking as I visit these programs?   I sure can use all the help I can get here.   I’ve got 2 more program visits set up, and have to make 3 more appointments.  As I said, tick tock tick tock.

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