Thursday, April 9, 2009

Disappointment & An Ounce Of Hope

Sorry for not updating you all on yesterday's meeting before now. Thanks to everyone who wished me well both online and off.
Unfortunately, about 10 minutes into the 2 1/2 hour meeting, I was well aware that they were setting me up for the grand finale: They think the current placement, along with a bit more speech, occupational, and behavioral therapies added in, is a free and appropriate education for my little guy.

I respect and like each of the people that was in the room for this meeting. I understand that it is not their job to just 'give out' alternative placements to students, especially with all of the budget cuts that have severely impaired our education system. I also realize that sometimes people don't necessarily speak up for the best needs of a child even if they *might* feel differently from what they say on the record. It is unfortunate, but it is what it is.

There was quite a bit of talk about M's progress with all of his goals. Just two weeks ago I had a parent-teacher meeting with his special day teacher who showed me all of her personal goals that she'd set for him one month into this school year. She told me quite candidly, (but in a way that I appreciated), that M was likely not going to achieve any of his goals by the end of the school year. And then yesterday she and the others present went on and on about how great he was doing and how far he'd come from the beginning of the year. I know that he did make progress in occupational therapy...he is absolutely stronger in his core than he was before, and he can now pedal a tricycle for a few feet independently. And I also know that he made "progress" in areas of speech if you consider reacquiring a couple of skills, like saying 'hi' and 'bye' that he had lost since moving a year ago, as real, measurable progress that should be the main reason for thinking that you are providing an appropriate education for my son.

Listen, I totally get that progress is progress. I just wish all of the other stuff could be taken into account along with it. Why does my child get agitated and resist going into school EVERY DAY? I don't care that he snaps out of it as soon as he gets into the classroom. How is it appropriate for a child with autism to have THREE different one on one aides throughout the day, along with seeing three different teachers (two special day teachers and one regular kinder teacher), and then four different therapists. (occupational, speech, behavioral, adaptive physical education) Let's add to that the fact that his portable building is at the farthest point on the campus and he is constantly being shuttled via the outdoors to rooms for various therapies, other classrooms, bathrooms, lunch room, playground, etc. And then let's add on all of the visual and audible stimuli around him. These classrooms are small, jam packed with supplies, and have walls plastered with maps, artwork, etc. that wouldn't phase you or I. Their rebuttal to my concerns about the campus environment? They put up fabric barriers around his desk when they are doing one on one work to help block out noise and visuals. In regards to having to walk all over the place during the day, they said that he is such a compliant, happy little guy, and doesn't have any issues going from place to place. I believe that he is compliant and happy; but that is simply because that is the child he is. However, I know that if you talk to any autism specialist, they would tell you that this many transitions and changes throughout the day is just not good for him.
I held it together really well for the first two hours, but toward the end when the pit in my stomach had grown into a cantaloupe, I did tear up a bit. I told them that I know that they all care very much about M, but to please not confuse his compliance and mild mannerisms as everything being okay and as progress. I mentioned my sincere concern that he is flying under the radar because he is not disruptive to the classroom, or a behavioral threat. I pleaded with them to take note of the potential that I see in him if only he had a true, autism-specific education.
I could go on and on about all of this, but I won't. I did not sign the paperwork and will be writing a letter saying that it is not okay with me and that I will need to look for other options. We'll see what happens then. I'm not up for a legal battle, nor do we have the funds to go that route. Although I expected it to turn out this way, there was a part of me that hoped they'd see what I see and fess up to it. Parents of other children in this class have told me that it is so obvious he needs something's just a shame that money and bureaucracy fog the eyes of those who could make that happen for him.

On a positive note, I took M and B to the school I love that is 50 miles south of my home. This was my third visit there, but M's first to meet the director so she could see if he'd even be an appropriate fit for the classroom. As expected, she thinks that he would be. She was so smitten with my cute little guy, and he with her. It's amazing to see a child interact with someone who really gets them. M gets like this with his therapists, but I haven't really seen him get like this with his aides or teachers. Anyhow, though the grant money the school had hoped to have access to won't be available for two years, the director is going to speak with the school founders later this month about M to see if they can work out something for him to be able to go there. I offered to barter my services to help them in their office or with fund raising--that's how desperate I am! The director laughed and told me that she didn't want me to become an indentured servant to my son. Maybe that isn't ideal, but at this point, I'd do it if it meant a better place for him to learn and be happy.

This was quite rambled...I'm having trouble focusing this week with all that's going on. Next stop: Monday's genetics appointment. Stay tuned...

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