Monday, September 27, 2010

Falling Behind

Daddy and Amelia lounging in the jacuzzi...ahhhhh!

I am home today going through all the paperwork that I should have gone through about 3 weeks ago. Amelia's Medi-cal Waiver booklet -- which I've filled out mostly, but have to corner Nestor into sitting down and going through the last bit of financial's with me. Her IEP (Individualized Educational Program) letter -- which to be fair, just came home today, but had to call her Service Coordinator at the Regional Ctr. and make sure I signed it correctly and that he is on board for the big meeting next month. We are coming from NY with a really strong IEP -- more therapy than anyone around here has ever seen! I want so badly to do right by my girl, but feel a bit of a pit in my stomach regarding this piece of it. Yes, I can fight, fight, fight...and I will. But you can't squeeze blood from a stone. When we set up Amelia's NY IEP in NY, the school systems were in a different place financially. Services were still abundant and budgets weren't being sliced apart with a paring knife. A year and a half later, I'm pretty sure we're going to have to dig deeper and get creative. I know this move was the best thing for all of us -- for so many reasons, I just don't want to miss the boat on this one, ya know?

I also need to get down with CCS (California Children's Services) and get them the information they need to "determine Amelia's elegibility" for services. They're an agency set up for children who are medically fragile/critical care cases!!! WTF????? Who is more qualified than Amelia? Jeez! The thing that set me off was when I got a call from a Dr. there. I have sent all of the records requested by the nursing supervisor and case mgr. Then this Dr. calls and informs me that she's not sure if Amelia qualifies for the "type" of therapy they do there. For example, she says, our PT is more geared toward children who are "hypertonic"(high tone, spastic)...Amelia is "hypotonic" (low tone, floppy). WHAT????? Isn't therapy, by nature supposed to be individualized for each person's needs? Sounds like they have some lazy, uneducated therapists there, if that's true. But here's what really ticked me off. This Dr. is calling me out of the blue...with Amelia's file on her desk. She can pretty much tell me anything she wants to get CCS off the hook. She has the advantage because she knows everything about Amelia and as much as I've read and asked professionals/teachers/parents/therapists about CCS, everyone will tell you the same thing "Yeah, CCS is weird. They have their own set of criteria and it's really hard to figure whether or not your kid is going to qualify." Again, WHAT???? This is a Government Agency! Don't they answer to anybody? I asked what happens when a parent goes after them...I was told that as far as anyone knows, that hasn't happened. Well.....California, meet NY!

The other thing I have been truly slacking is getting the family photos up. I finally got Nestor to agree to give me the back hallway so I can jam it full of our loved ones! Hasn't happened yet. Because the hallway isn't that long, and we have soooooo maaaaannnnnnyyyyy photos, I have designed my master plan of going to Aaron Brothers and buying some of those multi-frames. I'll do it. Probably just before my folks come out at the end of Oct.

Any lastly, I feel horribly guilty because I have been very lazy and negligent in sending out thank you notes to all our wonderful family and friends who thought enough of us to send us off to California with gifts and giftcards. So wonderful! I started the thank you cards, but didn't want to send half and then the other half -- in case anyone from Group B saw the note from Group A and thought "how rude!" not knowing their's was coming soon. I truly meant to write the other half -- but the days slipped to weeks and so on! This is not to get out of writing the notes...just wanted to say sorry for not being more on top of it.

This has been the most challenging, exciting, scary, confusing, exhausting....exhausting, fun experience in a very long time. And, as always, I remain...a work in progress.


Jodi Michelle Cutler said...

"California meet New York City!!!"
You go get em, girrl!

Anonymous said...

You are definitely on overload, so drop the guilt and you'll get to everything ASAP. You are a force to be reckoned with, so I'm sure you will get Amelia everything for her, that is humanely possible. Keep up the good work--I'm so proud of you!

Sophia said...

Love love love the pic of Nestor and Amelia in the hot tub. Fun! And CCS doesn't know what they're in for - take no prisoners, Debbie!