Tuesday, April 28, 2015

Little Bird: Part 1

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I sat at the window today for a really long time watching it rain trying to listen to the soft patter against the glass.  I was aching for something - anything to speak to me.  Send me a sign, send me something to tell me I am doing a good job.    I ached to see a rainbow but it never came.  Just heavy white and grey clouds looming in the distance.  Emails after email with bad, and complicated news.  Always another battle for me to fight, conquer and overcome.   It's never-ending.  It's heavy.  It's hard.   At the very center of it Noah completely dependent and relying on me to succeed.  And trying with every fiber of my being not to short-change my little sweet Luke at the same time. 

A bird perched on the feeder and stared at me.  With the feeder empty it nodded twice as if it understood and flew away.  They say that faith is a bird that feels dawn breaking and sings while it is still dark.   Was it my sign... the bird?  I certainly don't have it all figured out.  I'm searching just like the next person for all life's answers. 

The state has denied Noah's need for disposable pillowcases.  Something that in multiple emails were promised, I even jumped through all the hoops they told me to - obtaining a doctor's prescription and then yet another one because they found that one insufficiently documented, more documentation submitted proving that a non-traditional pillowcase of any kind would make the anti-suffocation pillow ineffective and dangerous.  Denied reason:  Caregiver Convenience.   Appeal they tell me.   More work, more time, more paperwork, more time taken away from caring for my boys because I am always waging war.  

After having worked in the legal profession and one my many college degrees being a legal degree I'm quite comfortable with the legal system, where many special needs parents simply aren't.  This process overwhelms them (understandably) so they retreat and don't often go on to pursue the appeals process.   There aren't many parents like me that know how to draft pleadings; motions, responses, replies, and know the timelines for due dates and court filings.   Yet, I can't say I enjoy the process any more even though it's a familiar one to me.  It's time consuming and rather exhausting to continually pursue this as my only recourse to obtain what Noah needs. 

And I can guarantee that any Administrative Law Judge that gets this appeal is going to really question why the State is wasting time with a pillowcase denial, something that isn't going to even likely cost the state more than $200 yearly for Noah.  And I can toast them so easily on this issue, I have all the indisputable documentation that supports the need for disposable pillowcase need for the anti-suffocation pillows they funded.   I did find an alternative option, a different anti-suffocation pillow that has it's own re-washable pillowcase - a differently designed anti-suffocation pillow with the same safety features.  It would likely cost the State about $76 dollars a pillow.  Noah needs 2 of them.  And obviously would save them money in the long run without having fund disposables.  They said they would consider it, but I fear another lie as they discouraged me from holding off on filing my appeal, but I know very well that I'm up against a deadline to file - one that I cannot miss while they lure me into not preserving my appellate rights.

And this all of course builds a tremendous distrust with the very caseworkers and professionals that claim to be on my side.  When all you do is deny what my child needs I see you as the enemy - not someone who is in my corner fighting to help my child.   The State received verification that a home-remodel upstairs for a modified bathroom would be $40,000-$60,000 from a local contractor and claim that is all they need to now resubmit the stair-lift request.  One shall see, it's a continual hoop that they make me jump through, we're in May I have to burn up Noah's funds by December.   Sounds like a long time but it's really not, I've been working on all of these current issues and requests since the beginning of January, and I'm no further along nearly half-way through the year.

And to add insult to injury I was at Noah's hippotherapy standing in my own little corner watching Noah ride, six other parents engaging and having a conversation together about their children who were all in a class together discussing how each of their children were on the CES waiver (Child Extensive Services Waiver) the same waiver that Noah is on, the same waiver handing me a handful of denial difficulties - bragging about how great their services were and all that they were getting.  Parents forthcoming with each other about diagnosis; children with a combination of high functioning Autism, Aspergers and Dyslexia.  And as hard as I tried I could only detect maybe one child with a slight behavioral challenge - otherwise you would never know there was anything "extensive needs" about any of these children.   No adaptive equipment needs, no speech concerns, no home modification needs.... yet they're all fairing out better than I am apparently with financial resources,  as one parent said she is allowed to use her entire $37,000 just on respite care.   Noah on the same program respite max is $14,999.  And last year as hard as I tried couldn't access over $18,000 of Noah's funds, and the State pocketed the rest of it.  I'm sure a double standard.  Aren't things typically that way in life?  While I'm happy that other parents are finding the financial help and resources that they need, I can't help but wish my child was too.

I just listened and then quietly left without being noticed (I'm pretty invisible to most anyway when you have a child as severely disabled as Noah).  Even amongst other parents who have special needs children if their children are better off than Noah, I'm typically not on their radar.  The sting from the overheard conversation was temporary as I was celebrating a miracle that I just witnessed...


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