Sunday, April 20, 2008

I'm Done ...

As much as I've tried to ignore my loathing of the school district since Jack's IEP in March ... I've now had it. The fact that no less than 7 people are re-arranging their schedules to attend the training session on the eye-gaze system this week except for the therapists from the school district was the straw that broke the camel's back. Jack's IEP is a joke and it's clear to me that the school district doesn't have any interest in helping Jack achieve his full potential. I'm tired of getting the school therapists up to speed. It's all backwards -- they are the ones who are supposed to be the experts. Jack has great therapists through our Department of Developmental Disabilities and he will be eligible for therapies through DDD at least until he is 18 - maybe longer. I'm just not sure if there will be an issue if I tell the school district to take a hike. I'd like to see them claim that Jack must attend "school" -- the two whole hours of "instruction" they give him a week (when they don't decide to cancel because something more important comes up.) Maybe we'll just take the position that we are home schooling Jack ... but, whatever you do, don't tell Eric that :-)

Then there is Hilary. She is supposed to get a half hour of speech therapy a week which she hasn't had on a consistent basis the entire school year. I got a message to call and set up a time for her IEP for next year. I think I'll tell the high school special ed coordinator to take a hike as well.

What I've experienced with both Jack and Hilary and our school district just confirms that we made the right decision 12 years ago when we picked up and moved to St. Louis. I can't even imagine how Hilary would be doing today if we had stayed here in Arizona, but I have no doubt she wouldn't be fully mainstreamed in high school with no support services. No interpreter, no resource classroom and no special accommodations. All of which is remarkable for a deaf kid!

I've been stewing about this all weekend. I'm tired of the charade and I'm not going to play anymore. As you can see, my way of dealing with conflict is to avoid it. I'd rather cut the school district completely out than fight for what Jack is entitled to. I actually prefer to look at it as choosing my battles wisely. I realized years ago that I can't take on every system I encounter as the parent of a chronically ill/medical complex/special needs child. If I really believe something is worth fighting for, I'll do it. I just don't think the services the school district (should) provide are worth fighting for in Jack's case. In any event, it should be an interesting week. I should add that our school district has a reputation of being one of the worst when it comes to meeting the needs of its special ed students, so it's not just my kids who are being short changed.

We did have a GOOD weekend with Jack. He is tolerating being in his wheelchair again and he really enjoyed getting outside for a walk yesterday. I don't know if I mentioned that he was positive for pseudomonas (which shows up as a lovely bright green slim in his vent circuits). He will be on an inhaled antibiotic for a month. I'm really not liking this road we are heading down because Jack had issues with pseudomonas the entire year leading up to his spinal fusion surgery and we could never get rid of it. It was only after being on all the IV antibiotics from his surgery that he finally kicked the pseudomonas. However, I'm not "going there" in my mind just yet.

I'll leave you with a picture of Eric from when we went shopping today. He grabbed the dummy out of the display window and sat down with it for a friendly chat. What a goof!



Have a great week!

4 comments:

Karen said...

I'm bummed you are having such difficulty with the school therapists....just remember we school people are not ALL that bad... :)
Karen

Anonymous said...

I feel your pain on the school district issues. It makes you crazy. I hope things go as well as they can this week as you deal with them for Jack and Hilary. Eric is a funny guy!

Cindy said...

First, it goes without saying that the school district should be ashamed of themselves. In fact, we as Americans should be ashamed of our public education system, but I will spare you that speech. Ann, rather than telling the school to take a hike - which is tempting - I would just avoid them as much as possible. Sounds like they will be fine with that. My concern is that if you tell them off, someone in the district might decide to call DSS. This happens sometimes with sped kids who are home schooled and you sure don't want that hassle. You are lucky that you have the DDD to fall back on; think of the poor kids who happen to live in a state with lousy schools and lousy disability services too...

julie w said...

That just sucks about the school therapists. I would just politely point out to them that 7 other people managed to arrange THEIR schedules so that they could be there, and would simply make sure that they are kept informed, so they can't suddenly turn around and start blaming you for not keeping them in the loop. Hope you can resolve the issues for Hilary too. THIS hassle you could definitely do without.

I hate pseudomonas, Sam seems to have had them all the time since last October - I've never seen such a bright green - there's no missing it! Hope the inhaled antibiotic does the trick.

Eric is such a ham, I just love hearing what he's been up to!