Tuesday, March 11, 2014

A Victory for Noah!

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A few days ago, I received that anticipated letter in the mail... the Order regarding the outcome of Noah's equipment denial appeal.  It was right after we had dinner.  I took a deep breath and said to myself no matter what it said, we'd be okay.  That we'd continue to fight on for Noah no matter what, even if it was bad news.  I was internally coaching and bracing myself that I could be about to read some more bad news.  I couldn't find the letter opener, my fingers messily opened up the envelope.  I skimmed the first page... then the second, the third, then the fourth.  I just wanted to know the end result.  Page number five there it was.   "The State Department's denial of the PAR is REVERSED and the PAR shall be approved." 

I did a victory dance, right there on the kitchen floor.   Let's just say that it beat any touchdown jig you've ever seen from an NFL football player on their best day.   SCORE!

I of course went back and read the Order summary.  My favorite part (next to the part that says I won) about the Order: "The Court cannot help but wonder why the State Department believes the appeal process is more preferable to a more straightforward methods for developing information deemed relevant by its utilization contractor regarding medical necessity in cases like this." I would love to believe in some small way that I'm blazing a trail to make it easier for other parents not to have to appeal to help their children.  And that the State would realize that we wouldn't be asking for funding if it wasn't medically necessary or needed.  We are trying to offer our children the best quality of life we can give them, a chance to thrive, a chance to improve, a chance at joining their peers and participating in the world around them.   

I don't know how long it will take the DME to place the order for the Krabat Crawler, but I'd like to hope it will be sooner than later since Noah has been waiting on this request since last October.   It's time to get this crawling party started! 

This has been a good week for the mail.  I have been receiving Parents Magazine in the mail for a few months.  I have never had a paid subscription - it just shows up every month.  I remember expressing frustration with the receipt of last months issue.  I tour it quickly, realizing that the majority of the magazine doesn't apply to parents like me.  Advertisements, recipes, tips, a celebration of milestones.  It is like looking at a world in a magazine that you'll never be a part of.  Window shopping how your life *should* have been. 

But today the April edition of Parents Magazine arrived.  I wasn't even going to look at it.  Last month I remember telling my mother how awkward it made me feel and her advice was just to throw it away and not bother.  But I opened it and flipped through a few pages and came to page three.  My interest was peaked by a little red headed girl with down syndrome and it said to turn to page 63.  I turned to 63 expecting just to read about just this little girl, but instead, I found an entire 20 pages dedicated to articles on topics pertaining to special needs children and families.  And not one but two families discussed who have children with cerebral palsy.

I flipped back to the front and sure enough the headline reads "Life in a Special-Needs World."  I likely didn't even notice that headline because the children on the cover look typical in every way.  Thank goodness I gave this edition a glance.  These kinds of topics should routinely be in every parenting magazine.  We shouldn't be separated between this is a special needs magazine, and this is a typical parenting magazine.  After all we're all in this parenting gig together.   And many of us live in a mixture of both worlds, our family dynamic involves both a typical child and a child with special needs.  The first time I've opened up a magazine that you'd find on any newsstand that applies to me!   Way to go Parents Magazine, I'm glad I didn't give up on your content!

"Disability inclusion is about society changing to accommodate difference and to combat discrimination related to people with disabilities. It requires that disabling barriers are removed and personal needs relating to impairment are met, thus making possible the full involvement of people with disabilities and enabling them to benefit from services on an equal basis with others."  Buyie Masaku


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.