Today we had and IFSP (Individual Family Service Plan) meeting for Ruby. We met with her community preschool teacher, her service coordinator, her other preschool teacher and the speech and occupational therapists (that haven't had time to work with ru yet, since it was a short summer session, and she was sick all last week.)
Unfortunately the meeting started with a bomb. They are closing the program at Edwards Elementary, and all of these kids are being shuffled around. WTF? It feels like every time we turn around, we get told "well we're changing the program" or "people are being shuffled around". I knew going into the educational system with a special needs kid would mean I was going to have to stand my ground, be an advocate and occasionally get loud, but from day one? I feel like I've already had to fight for services (speech and occupational therapy) that never really materialized in the end anyway. I feel like I've already had to stand up to 'specialist' who weren't stopping to hear and see who and what we are about before trying to 'help' my kid.
In the end, this past year has been a HUGE growth year for Ru, her language has expanded (mostly because I paid a ton of money for speech therapy, and our insurance for all adjunctive therapies ran out in June) her social skills have increased tenfold, she's learning how to play with friends, how to communicate her needs and how to get her needs met. How much of this is due to the 'services' we've received from PPS? I can't say much, but I'm not completely ready to give up on them. Shit, I pay my taxes and would like to see some sort of benefit come from what the public system is supposed to offer my child with a disability.
One of our choices is to go back to the class from hell or check out another classroom at Lewis Elementary which is a k-5 and from what i was told, the preschool classroom is run by a much different teacher than H is at Edwards. The reason Edwards worked was because it was small, quiet, contained, perfect for kids with sensory and special needs. Putting her into a bustling school with BIG kids running around? NOT READY. Our service coordinator (MB) who's worked with Ruby for a year, and has seen Ruby in action at our community preschool (MVCS) and who knows me and what I will and won't like, made it pretty clear that she didn't think I'd like the other teacher/classroom, that it was much more restrictive. Clearly, not really an option. (also, they start at 8 am. too effing early)
Our other option is to choose community placement (ie: have her at MVCS) and have H and the speech and OT come to Ruby. Because of the changes they are making to the program this year (i am guessing they change stuff constantly, cause last summer during the eval part, the evaluators seemed to have no clue what was really going to happen after the eval, just that ruby would qualify for services. Shit, it seems like no one really knows who is scratching who's ass in this whole effed up system) they will offer much more to kids in community placement. Apparently the goal is to move kids into community schools and have all services come to them. Is this better? maybe? but guess what? You have to pay out of pocket for a community school. The program at Edwards was a class that (because Ruby qualified) didn't cost us anything.
So what? you say... ruby is already in a community school, we were already paying for it, what is the difference? Well, the difference is that in the past few weeks, having school or class every day, has been brilliant for ruby. Mornings have been a breeze, 4 days a week we get up, have some quiet time around the house and bustle off to class. Like every other kid on the spectrum, she seems to thrive on a routine and a regular schedule. So... if we don't choose the Lewis program, and we do want to have her in class 4 days a week, I have to find and pay for another preschool program. Of course this second program will be short, like 2 hours just to give her ample opportunity at social skill practice and interaction with other kids/adults. On top of this, we're also hiring a (fabulous!) professional to intern at MVCS and then to spend 3-4 hours a week one on one with Ruby on the afternoon that I see patients. AND, we're out of insurance money to cover speech therapy, so when we return to it in august, every penny has to come out of our pockets, and occupational therapy? ante up, buddy, cause we're paying for that too.
In the end, I feel like this plan will work out, assuming we find another fabulous preschool that has an opening for 2 mornings a week and that I start shooting money out of my ass. I'll get to work on that.