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.

My Nightmare

Visit msnbc.com for breaking news, world news, and news about the economy

Potty Post!

 Amelia relaxing on the deck 

It has finally happened..Amelia has now gone #1 on the potty -- averaging about 2x's/day since she started school on Monday.  Woo hoo!!!!!  Her healthcare attendant, who we really like, informed me on Amelia's first day of school that she will be putting her on the potty 2x's each day at school.  So Nestor and I ran out on Monday afternoon and bought a little potty for home.  She went #1 for the first time at school and the first time at home was yesterday afternoon.  Both Mommy and Daddy were present and you would have thought we had just won the lottery with the hooting an hollering we did!  Amelia was very proud of herself too!

It's weird too because I just had a conversation with another special mom last week about how she's been toileting her son -- who is very similar to Amelia.  I was surprised because I hadn't really thought of it as a possibility for Amelia until much further down the road.  My friend told me to start making a log of when (more or less) Amelia goes, throughout the day.  Then try to put her on the potty when you think it might be the right time.  I haven't started the official "log" but I'm trying to feel her diaper and if it's been dry for awhile, putting her on the potty. 

Another thing I haven't done yet, which my friend recommended, is to get her big girl undies and put them under the diaper so she can feel when she gets wet (our kids have enough issues with sensory stuff and diapers these days wick the moisture away, so much so, that typical kids have problems feeling when they're wet) -- so I guess that's next.  It just sounds like such a huge commitment and mess!

No #2's yet...but the day is young!

9 Years After

I can't believe it's been 9 years since we were attacked on American soil.  Nestor and I stood at the windows in our little apartment on 10th and Hudson St. and watched the unimaginable.  I remember the sheer terror and panic I felt.  I couldn't believe what I was seeing...there in front of me...not on TV but in front of my face!!!!  I kept saying, through the black smoke, as the first tower went down "it's not there anymore.  OH MY GOD IT'S FALLEN DOWN!!!"  We didn't know what to do with ourselves.

We took our dogs, Blackie and Elvis out for a walk.  Everyone was walking around in a haze.  There were throngs of people walking up Hudson Street covered in black soot -- dazed and confused, silent, crying, weeping.  They looked like the walking dead.  No traffic, just Emergency Service Vehicles.  Nestor was desperately trying to look for his sister, Evelyn, who worked in the American Express building adjacent to the Twin Towers.  We found out later that she had come directly to our apartment, but in her confusion couldn't find our correct apartment buzzer, so she went around the corner to the PATH station and got the last PATH train back to NJ where she lives.  But Evelyn didn't reach us for some time later and until then we were panicked to know what had happened to her. 

We lived on 10th Street where the 6th Precinct is located.  You couldn't even get onto our block without a photo ID with your address on it.  For weeks, vehicles couldn't get in below 14th Street, including groceries, papers, everything.  There was price gauging on milk (altho in NYC, how can you really tell), the gyms were closed, we just sat in our apartment with the TV on, day and night.  It was so somber and dark where we lived.  The black soot kept settling on the window sills. 

Time ticked by so slowly.  One day we decided to go for a walk and head east.  The strangest thing happened -- the farther east we went, the livelier things became.  By the time we hit Alphabet City -- life was happening.  The outdoor cafes and bars were spilling over with chatter and laughter.  Sounds of dishes and cutlery, cars, traffic....LIFE.  We had been living in a war zone in the West Village -- literally.  It felt so good to get out, have a drink, some food and actually smile again. 

Those were such black days -- for the entire nation.  I am grateful that I was there to see it firsthand.    As horrific as it was, it was an event that I will sadly hold in my heart forever. 

In the weeks after, there were hundreds of people camped out on the West Side Highway with food and water for workers in Emergency Service Vehicles.  We all learned to look at Policemen and Firemen in the eye as we walked by them on the streets and give them a solid "hello" and "thank you."  Seeing the out pouring of love and support to our nation's first responders -- firefighters, police, EMS and all the other people that pitched in their efforts -- they are our heroes. And of course, remembering all the people we lost 9 years ago...who will never be forgotten.