Monday, October 15, 2012

31 for 21: It Is Better Than It Looks

There is a movie that I have fallen in love with's my go-to folding laundry movie...up until lately, it was either Harry Potter or Jane Austen...but I LOVE "The Decoy Bride"!!

It is British and everything that that entails:  situational comedy, witty snarks, and beautiful to look at.  An absolute pleasure.
There is a part, where she tells the guy, "I'm a lot hotter than I look."  And somehow that resonates with me at a deep level.  Funnily enough, it came to mind when I started writing this post...
I write most of my posts in my mind, in the car, before I ever open my computer.  I had this one almost done, when I opened a bloggy friend's post This Morning, which tied me in nicely, too.  Which sets me up...
My life is better than it looks.
I am dead serious.  My kids are great.  All FOUR of them.  Including my not-so-typical-one.  She is beautiful and spunky.  She has come leaps-and-bounds-forward over the last year...and for all I seem to write about the "Off" parts of life, I really don't feel it most of the time...I write because that's what's going on...but I don't think to compare it until something big happens or I'm filling out the Deeming Waiver packet...It's just my life, and, frankly, I'm enjoying it.
Once a year, I have to fill out paperwork for the Katie Beckett Deeming Waiver.  It allows kids with profound issues to get Medicaid as a secondary insurance.  So if you have stinky insurance, your kid can get the intervention they desperately need without putting you in the poor house.  For example, Elise blows through ALL of our insurance's allowed therapies in 4 days, the first week of January, she has met her quota for the year.  Everything else is out of pocket.  And that's just the beginning...
The Deeming Waiver is a blessing.  Which is why I fill it out every year.  But the paperwork, while an astounding load, is also an emotional battery.  I have to say, over and over...and give examples and proof, that my child is "profound" and "mentally retarded" and would qualify easily for a "Mentally Impaired"  facility.  I have to prove where she is behind...and it is ground into my psyche with a battering ram for a month every year.  This year, I filled out all my papers, collected our psychological evaluation, therapy notes, and so on...for a grand total of 95 pages.  No lie.  I just copied them and sent them this morning.
I am raw and hyper aware just how behind her peers she is.  And the thing is, this won't be changing much by next year.  The Down Syndrome and secondary diagnoses will not be going away.  The bonus 21st will not be dropping out the car door at some point...  So why am I forced to reiterate this every she can get interventions that will help her to improve from her current beyond me...unless they are just masochistic and mean...
And to top it off with a cherry, I got her school photos on Friday.  I took them out of her bag this morning.  And in all the years of school pictures, in all the years of off the cuff photos, in all the years of candids, we've never gotten one this bad.  She LOOKS like what the Deeming Waiver wants me to prove she is to them.
I called up the photo group and told them what I thought of it.  I told them that it was the worst picture that has ever been taken of her.  I told them that the photographer HAD to have known that it was bad.  I said that I felt like it was a kick in the teeth, that the photographer saw just a kid with special needs and didn't bother trying...  The customer service guy, responded.  "Woah.  Yes.  I agree.  They had to a matter of fact, this was the retake, from one almost as bad...but her eyes were closed."  He then told me how to get retakes and my package would be changed over to the new photo, free of charge... 
'Member when I said, some people just don't care?  Yeah.  This would be proof.
Last year, I was just bragging that she took fabulous school pictures...See Here...and the years before that were even more spectacular!!  But how can you see *THIS* child: 
And take the previous picture?????  I just don't get it.  And it makes me REALLY Mama Bear Mad.
SO.  PLEASE see my girl the way I do.  Celebrate with me the crazy milestones.  Hear the truth in your mother's words, "It tastes better than it looks, I promise!"  See my life for the joy and fun we have.  Feel Elise's joy roll off you in waves.
Because my life is pretty darn good.  And that's the truth.  And I'll prove it tomorrow...!


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