The auction I put together ended up raising over $30,000 and the event it was a part of raised over $700k – 96% of that goes directly to fund research. That’s a spectacular number and I’m so honored to be a part of something that’s giving so much back. Unfortunately, it’s still just the tip of the iceberg, but the iceberg looks a little smaller today.
I’m so glad we were able to raise as much as we did, because there are a lot of very promising and exciting scientific discoveries happening every day. If you have a google alert for Rett Syndrome…anyone?…just me…?..ok. Well, if you have one of those google alerts you’d know. It’s literally every week that there’s a new something that they tested in Rett mice and it’s showing some promise. We’re really getting there and it’s exciting.
I have to figure out what the next thing I’m going to do to help is. I have some ideas, but this auction took a lot. I’ll get back into trying to solve the larger problem in a week or so, but in the meantime, I have to tackle some of our own problems:
Maggie’s IEP is today. I didn’t know what an IEP was before she needed to get one, and I’m still not sure I know what the point is – but it stands for Individualized Education Program. She gets assessed in a number of different fields via testing and observation over the course of a few hours and that’s how the school district determines what they’re willing to pay for.
Ultimately they do want to help and they do want to give her the services they feel she’d benefit most from. However, their perspective of what would help the most and our perspective is likely to be different.
A communication expert put it to us best – if a kid was deaf, they would have a sign language interpreter, no questions asked. For Maggie, a non-verbal kid who has the language, she just can’t get it out, she needs the equivalent in order to effectively access her education. She also would greatly benefit from an Augmentative Alternative Communication device like an eye gaze computer, so that her handicaps with her hands wouldn’t prevent her from requesting basic things.
She also needs therapy. All the time. Without it, she will lose the skills we’ve worked so hard to save and learn.
To a school district, all of that sounds expensive. To us, it’s the barest of necessities. And this IEP? Just another iceberg.