Tuesday, May 10, 2011
Life has been crazy busy as usual around our house.
Last weekend we attended the Grand Opening for the Randol Mill No Barriers Playground. It was a beautiful morning for visiting with our friends, playing, swinging, merry-go-rounding, and see-sawing. We also cheered on our friend as he coached a Miracle League game. After that, Kendall spent the night with her Nonnie and Poppy and Justin, Kamden, and I had a wonderful afternoon sitting by the pool and going out to dinner. But, of course, it wasn't at all the same without Kendall :) Justin and I would have enjoyed a full night of sleep if it weren't for our Lab Chloe knocking over the smoker and carrying our brisket for Mother's Day lunch across the yard.
Kendall has had a great week at school so far. She loves going. Her afternoon naps are phasing out, and she is wiped out after dinner. I like that added benefit of school!
The latest broken record I'm hearing (or, rather, reading....on District Letterhead attached to an e-mail and cc'ing each and every decision maker in the District) is that our school District is required to provide Kendall a Free and Appropriate Public Education. (no freaking kidding?!?!) Somehow that translates to some people that the only option is to provide Kendall with traveling nurses and not use an agency the District is contracted with. Whatever. I know I heard (and others in our meeting heard) her say there was a District Policy that reads it isn't allowed. Through a lot of research, I am now armed with a plethora of examples and information that will be attached to my grievance. I spoke with 2 board members off the record who think this is worth looking into. Everyone is concerned with budgets right now. I'm not afraid to keep on until I have decent continuity of care for Kendall. IF the District could offer that, there wouldn't be a problem.
I learned from here on out, I WILL be bringing a tape recorder to meetings, since some people have selective memories. And apparently our District has a CYA mentality, so I guess I'll join in. Game on.
I also learned how frustrating it is to watch someone talk out of both sides of their mouths. If accepting private related services and equipment puts FAPE in jeopardy...how is it OK to do it for 45 days with our nurses, and bring the iPad we own for communication evaluations, and floor chairs so Kendall can participate, and her stander (which we haven't brought yet, but plan to) In an ideal world, we would not worry so much about the laws, and focus more on what is best for Kendall, her teachers, and the rest of the classroom. But I get that we don't live in an ideal world...and our District is way better than most.
I learned this week that when I get back into Education (like when the stars align with Kendall's life and I finish my Master's Program...hopefully in the next 3 years) I will not treat parents condescendingly. I will not use the "learned" dialogue. You know, where you repeat their concerns by saying "what I hear you saying is..." then turn it around and say something completely different. And I definitely won't comment on how young they look.
Ugh..sorry for another rant. I promise I'm finished going public with these things...
Today we went to the Neurologist. He went over her EEG again and said how good it looked. He said there is definitely much more "good" brain activity than there was before. He doesn't think we need to change any meds or get back on the Ketogenic Diet. Thank goodness. He was concerned about the increase in her UTI's, and since she was on the Ketogenic Diet for so long, has ordered another Renal Ultrasound. I'm sure everything will be fine.
So that's all. Still working on taking it one day at a time :)
Posted by jocalyn at 3:16 PM