So one of the things we get to do with Connor and his teachers each year is develop an IEP, or Individualized Education Plan. Our meeting for his annual IEP is tomorrow morning, and it always makes me nervous. The educators and therapists spend more waking time with Connor than me, and it's easy to lapse into a clinical relationship, where they make recommendations and we blindly agree to them. I'm going to fight that tendency tomorrow.
Connor has not been doing so well this year at school. He is being picky about eating, and his weight is a constant concern of ours. I want to make a specific eating and a specific drinking goal for him, but we have to balance that with what they can accomplish at school each day. It's not like he is the only student in the class, after all.
Basically, it comes down to this - when he is at home, there is only one choice that Lee and I have, and that's to make what needs to happen for him happen. For example, if he didn't eat well at school, he HAS to eat well at home. We have no other choice. And while the IEP gives the educational team signposts and milestones, they cannot force him to accomplish them. It's not possible.
It'a a careful balance to be the dogged advocate and not alienate all the other magnificent people who help him every day.
Monday, December 10, 2012
Rededication. I found out when it started last week that there is an Infantile Spasms Awareness Week. I have been much quieter lately about Connor and his illness, it's attendant issues, and life in general. So I took to the week, deciding to post daily on facebook about IS and it's impact on our family and Connor, and the things I have learned because of it. And I received an overwhelming and incredibly loving response. I did not post these things to make people say such nice things. It made me think that maybe I've been TOO quiet, and that there was a lot of curiosity about Connor out there, and that maybe it is time for me to talk about it again. So I'm reopening Chunkin's Blog, started when he was so little, to post about his life, our life, and interesting (read: usually infuriating) things I/we are dealing with due to IS being part of our lives. Since I'm ALSO starting a new business, I will promise to blog at least once a week. It may end up being more, but I will blog once a week without fail. It's time for me to be open again. I hope you enjoy my posts, or learn something, or even better, both. Colleen