Advocacy for Dummies

Advocacy for Dummies or Advocacy 101, however you want to call it. I think I am failing...
It is so hard to keep fighting and to be upbeat when all doors seem to close in front of you. Today was one of those days, when Zoé's PT told me he wouldn't write a report to further support her case in front of a medical insurance denial.

I felt betrayed. It really did hurt, because after so many months of battling the system, it touched a very sore spot.

You think you can trust people, but at the end of the day, you are on your own, trail blazing the path...for some better future outcome.

Zoé is part of the equation, and when your child becomes a case that seems unable to be resolved, you don't think twice. You simply have to keep the fight.

It's just hard.

I am so happy to have this blog to vent my angers and frustrations.

I am so sorry.
Irina, a longtime friend sent me an email today to tell me what an inspiration this blog was, and I am trying to keep it that way, but the fight takes a lot out of you, trust me...

We got our 20-month questionnaire and evaluation last Friday, to validate Zoé's eligibility with the Regional Center, a bureaucratic machine that decides, according to 5 criteria, whether your child can be on board or not.

The day before they told me that "as of September 31st, Zoé will no longer be part of the system." What a blow! Well, the next day her file had been reviewed and we were told that Zoé had been moved from "high Risk" to "global delay", whatever that means...

Then, some of the questions blew my mind:
-Can Zoé stack 8 cubes to make a tower? Who does that, at 20 months???
-When you draw a straight line with Zoé, does she copy you? uh, yeah, but it's not that straight.
-When Zoé paints, does she paint over the border of the paper? Yeah, she paints on the floor, her chair, her hair and my pants!

Well I'll spare you the rest of the questions. Questions which make your child "qualify" or not, for what? I am not quite sure.Maybe it will stay in her file for her college applications!

Sorry for the ranting. Thank you for your support, dear blog readers.
I'll try to be more positive next time around. I have to keep smiling, for at the end of the day, Zoé brings joy to my life and paint to my laundry basket.

Caught Red-Handed

In possession of self-incriminating evidence: Zoé loves Ikea kiddie pasta!

Daycare Dreamin'

I took Zoé to her first day care. Wow, she cried 2 minutes as my heart was broken, but Pam, her new "teacher" called me right away to tell me that all was good.It felt great to have a bit of time off, despite the mountain of paper work I had to sort out.

Unfortuantely, after our trip to France,where Zoé enjoyed many playdates!!! we are now back to reality: insurance nightmares, denials for coverage, battles and letters of appeal. The quagmire is never ending...

Zoé is supposed to start serial casting, a 6-week session of fiberglass and plaster casts on both legs. Which means no baths (only sponge rubs), no water tables, no water play, but much frustration. However, I know that our resilient Zoé will still find a way to climb, stand, cruise and walk...yes, for she now speeds along with her walker. On Monday, she left the building after her PT session, crossed the entire playground and all the way to the car parked on the street. I was simply flabbergasted.

French Frog

We've been in France for about two weeks already and Zoé has been exploring her new surroundings at lightning speed. Nothing stops her:
-climbing stairs, up and down
-sitting on tables, high tables!!!
-rushing to grab someone's beach toy or ball
-crawling down to the shore
-toppling in waves, helmet and all
-cruising and making turns with her walker, into the kitchen from the living room, onto the patio
-drawing
-dancing
-devouring French cheeses and other delicacies: crepes and BBQ sausages.

I had meant to post this from Brittany, but we are now back in California after a long deserved break from all therapy sessions.

We did see an osteopath, who was simply amazing! Unfortuantely he could only see Zoé for a one-hour session as he was leaving on holiday the next day. I do believe it's almost worth going back to France regularly to see him. He had never seen a helmet. Plagiocephalies are not corrected with helmets in France, osteopaths do it, by molding the head back into shape, through gentle manipulation.