Tuesday, July 19, 2016

Telling My Heart To Keep Beating

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It's a strange thing how life can leave you feeling like you're been shattered in a million different pieces. And just when I glue myself back together, put imaginary band-aids on all the open wounds, something comes along again and just leaves me broken all over again.  Part of me so incredibly frustrated that I even allow others to impact and influence the direction of my days in such a powerful way.  I crave days without problems when nothing goes wrong, nothing for me to fix, nothing for me to fight for, a simpler existence. 

I have found myself in a purge mode, where I'm trying to cleanse my life from things I don't need, possessions that aren't essential that I can part with to create more room for Noah's needs.  In some ways it's a feeling of relief - like this giant epiphany that I've been searching for.  Perhaps it gives me a sense of influence over things that are often beyond my control. I sat down one afternoon and evaluated the roots of my frustration.  Certainly a large part lies in the daily fights for finding help for Noah and failing.  Empty promises a strong column on the chart - people reassuring me they'd help fundraise, or fund an item for Noah, but none ever had true intentions of following through.  Those who sent me words that they'd "pray" for us, when in reality that simply is a phrase people casually use to absolve themselves from any real involvement in your life.  If they pray then they don't need to physically be present, or send you a card, or call you, or bring you a gift certificate to the grocery store, to ask you to lunch, or to event think about you beyond the mere two minutes it takes them to type out an email message or social media comment that says "I'll pray for you."  And while I believe in the power of prayer people toss it around so casually now that it's become just words and not a real action.  I crave honesty; those who deliver in promises and are true to their word, those who don't leave me feeling stranded all the time.  And I've come to accept the only real person I can ever count on is myself.   Which means if Noah needs something, I'm going to have to find a way all on my own. 

Fighting and advocating can bring you to your knees if you aren't careful.  You can suffer significant burn-out from trying to be the world's hero.  You realize everyone has put you on the front lines, but they expect you to fight the battle all alone.  It's all I can do to fight just for Noah and even then I often lose more than I win.  I hate this perpetual feeling of a me versus you theme to my day.  I wake up prepared to fight with SSI, Medicaid, Medicaid Waivers, caseworkers, supervisors, managers, attend court appeals hearings in an attempt to reverse denial benefits for Noah. And outside problems are intensified when you are a parent with special needs - trying to find creative ways of apologizing to my neighbors who's yard was inadvertently sprayed with an organic weed killer from our yard service company that totaled their decorative plants growing in between their flag stone pathway that separates our property, dealing with contractors that lie to get a sale simply because they see you as an easy mark and they know you're desperate to replace a molded pained window that exists in your medically fragile child's bedroom, a security company who then wants to further take advantage of the situation and tells your contractor to permanently disable the window security so they can sell you on a digital more expensive system that is triple the cost, having a mortgage company conveniently losing your check in the mail and to avoid a late fee you hand out the details of your bank account over the phone and are forced to place a stop payment on a check that costs $45, only to have that company attempt to cash that cancelled check two days later. It's like a cluster of daily complicated problems I'll never escape from.   I have to keep telling my heart to keep beating - to keep going, to breathe.  Just breathe.  Just try to breathe.   It's easy for life to feel like it's suffocating you when you're dedicating all your positive energy and every ounce of yourself you pour into your child with special needs and everything that accompanies that.

Although I've really lost count I think it was Noah's fifth or sixth appeal hearing on May 20th of this year.  I was battling the denial of PPod Accessories for Noah's existing PPod that we paid out of pocket for, and an in-home personal chef to assist with the preparation and dietary needs of Noah's pureed foods.  Of course these denials I believe were very much retribution and retaliation for speaking to the news media and press about the financial circumstances surrounding Noah's denials and supporting transparency among all of Colorado's Community Centered Boards or also commonly referred to as CCB's.  I never even had the chance to formally request these benefits - the State simply anticipated I "might" ask for them based on some very lose conversations prompted by Noah's caseworker at the time.  The State certainly didn't deny that retaliation was the reason why Noah received these denials via a telephone message within a half an hour of being called for a public comment to accompany a broadcasted media story of CCB's getting their hands caught in the cookie jar stealing funds designated to go to children like Noah and being used for things like Costco memberships and private telephone bills.  CCB's fighting hard against transparency hiring lobbyists and spending hundreds of thousands of dollars to avoid having to be transparent.  But those who have nothing to hide - hide nothing at all.  While SB-38 passed, it didn't encompass everything that I wish it had - in a way it was a stripped down version.  And while it's a good start perhaps, we still need and deserve so much more.

The State was citing Social Security Act Section 6505 for the reason why they decided to suddenly deny Noah PPod accessories.  SSA Section 6505 was signed as Federal Law in 2011.  Five years later, they decide to use it against Noah.  Section 6505 prohibits the exchange of money to any out of country vendor for any Medicaid Waiver benefit.  This means that equipment that exists in places like Canada, the UK, and Northern Ireland can't be paid for with Medicaid or Waiver funding.  Leaving everything once again a completely out of pocket unassisted cost for already financially struggling families.  I think the original intent and my interpretation of SSA 6505 was to prevent Medicaid fraud; for instance someone on Medicaid traveling to Mexico for pharmaceuticals or treatment, and not necessarily to block a small child from life changing adaptive equipment that they need for their daily living needs and quality of life.  An Administrative Law Judge however found that his hands were tied as it is Federal Law, and all States are bound by it.  The Executive Team for Colorado Medicaid assures me in telephone conference calls that they will continue to explore the application of SSA 6505 but I suspect if they do it will be years from now and that there is no real hurry as SSA 6505 is beneficial for them - it allows them an outlet to prevent even more children from accessing paid category benefits, and in turn they will pocket even more.   The Administrative Law Judge felt that an in-home chef or person to assist with the preparation of Noah's meals was a covered benefit under EPSDT which isn't the case.  I likely didn't fully explain my intent of that request, because in all honesty I didn't even know the State was going to issue me a denial for a service that I was just tossing around in my mind.  EPSDT Medicaid only covers certain supplements and calorie drinks, it does not provide for a personal cook/chef, in-home dietician of sorts.  I might explore that at another time, I'm not really all that sure - it never was a front runner of things I was considering pursuing for Noah.  The State's only intent with that denial was just to provoke an angered response.

A few weeks later the State decided to decrease Noah's respite and sent me an 803 notice.  Because I am Noah's legal CNA, there is a provision that says because I am Noah's CNA that I need less respite hours than a mom that has paid private duty nursing and goes off to work each day or can come and go as she pleases because she has hired care for her child.  Backwards I know but I don't make this stuff up.  If anything the parent who dedicates their entire day to their child's 24/7 care needs more relief than the parent who has help.  In any case this means that Noah cannot exceed his category funding.  Other families can, but I'm penalized because I'm Noah's CNA. There isn't anything I can do about that regulation either.  I'd lose if I tried to appeal it - as a Judge would be bound to follow that rule. The only thing that I could dispute would be that his county takes a 3.5 percent fee out of Noah's yearly funding and pockets it on any category or benefit they approve which leaves Noah with even less than he would be afforded otherwise because these agencies are just making money off of an already bad situation. Here's all the help we'll dangle it like a carrot you'll never reach, and if you do reach it, they're going to snap 1/4 of that carrot and eat it themselves.

After a long battle that reached more than eighteen months from start to finish came to a final conclusion.  The fight for adaptive sensory clothing for Noah was finally fully won even after the State filing an Exception to Initial Decision and then taking nearly another five months for a determination.  No parental portion of responsibility which I knew was the case all along.  The State did require I obtain another PAR, which had already been done having Noah's treating physician sign off on how many articles of clothing he'd need seasonally.  While it felt redundant I jumped through the required hoops and I coordinated and picked out some clothing to get Noah into the upcoming fall season.  I wish the victory had been easier, I wish that no parent had to fight as hard as I have fought.  It feels so cruel and unnecessary in all that we experience in a day that someone would intentionally add to our stress and heavy heart.  It feels so bittersweet - a strong fight won, but I know so much more still lays ahead of me.  But as a portion of Noah's allotted clothing lays before me ready for me to hang up a feel a huge sense of relief and as a look at this small pile of clothing as if its a symbol of my unwavering efforts and promise to Noah that I will never ever give up.

Even without a heavy dose of evening caffeine to keep me alert for Noah's needs in the night, my thoughts keep me up at night trying to out-think the situation.  Where the money will come from? How to fund a wheelchair, an activity sitter, a floor sitter, a Mygo Leckey Tour Base, a seating system for Noah's Zippie chair, what to do with Noah's Convaid models that I love but that are giving him pressure sores.  Medicaid of course "kicked back" three of Noah's requests.  A "kick-back" is one step away from a denial.  They do a "kick back" to gain additional information to determine if they should approve it or deny it - you have to answer additional questions and justify the need.  Sometimes they'll approve it, sometimes after the "kick-back" they'll deny it.  I'm always so prepared for a denial that since the "kick-back," my mind has been racing to how fast could I fundraise for these things, what could I sell in my house to make sure Noah gets them, appealing feels endless and drags out things Noah needs sometimes longer than a year when he needs something now, not a year from now, knowing that some things his waiver might fund, knowing that since that too is a Medicaid program I'd likely face a denial there too.   Noah has outgrown all equipment he currently has from his toddler years.  He is seven years old - quickly headed for eight and I worked so hard to acquire him all that he needed, and I can't just start over.  I can't just find another foundation to buy him a bigger floor sitter, or a new wheelchair seat, or a mobile base for an already existing device - I can't just find these avenues of support anymore.  The resources have dwindled.   Many of the pieces of equipment Noah currently has didn't even have a Medicaid code for funding when he was little and I was forced to put so much of it on credit cards to obtain it.  Years later there is no safety net, and nothing to fall back on.

The really tragic aspect about being so dependent on a broken government system for children with disabilities is that I'm doing my job.  I'm being this incredible parent to Noah.  I search the ends of the earth to make his quality of life and happiness the best that if can be, I am devoted and offer him every part of my being and spiritual self, I love him beyond all measure and have had to even alter my personality over the years to do combat and battle on his behalf when that's not at all who I was before he was born.  And I can't just absolve those standing in the way of the benefits that Noah is entitled to.  And when I say entitled I mean benefits that are regulated under rules, regulations and laws that are being withheld from him.  And it's not just Noah - it's all children like him, it's happening to so many of them - especially if their parents step outside of the compliant box to appeal a denial or challenge an injustice or promote change through legislative efforts.  Doing the right thing by your child and the special needs community doesn't at all make you very popular with certain agencies. 

- Investing in a child with special needs in no way a luxury, but should be considered a national necessity. - A variation of thoughts by Marian Wright Edelman


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

Wednesday, July 6, 2016

4th of July: Smile Gratefully

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Blazing summer heat intensified the smell looming from neighborhood bar-b-ques and July wild raspberries ready for picking.  Classic signs of impending Independence Day celebrations to come.  I never fully know how far to plan our Fourth of July activities since Noah's sensory challenges vary and can be unpredictable.  Yet, with summer in full swing, I can't help but want to absorb that feeling of bar-b-ques, picnics and evening fireworks.  I decorated the kitchen table with a disposable stars and stripes tablecloth and adorned with a handful of red, white and blue napkins and paper plates.  Luke and Noah in matching flag shirts, ready to celebrate the day.
Ironically Noah lost his fourth tooth the evening of July 2nd, just in time for the 4th of July.  He went to reach for a toy and his strong athetoid movements caused his arm to jerk back and he hit himself in the face knocking it out.  It had been very lose but not lose enough for us to pull.  We both were relieved that Noah didn't swallow this tooth.  The search for his 3rd and swallowed tooth was called off after seven whole days of searching.  I never imagined that I'd be mashing feces in an attempt to locate it, yet the mother in me really wanted a full collection of my child's baby teeth.  I suppose I would have made a terrible gold miner as I failed to locate that teeny speck of white.
Given the track record of special need children who frequently swallow their teeth, I have to accept that three out of four isn't bad considering the challenge of a child who cannot put their hands in their mouth to wiggle out their own teeth.  Noah left a tooth fairy note to explain the loss of his third tooth and the tooth fairy still left him money.  She must have been feeling particularly bad for him as she increased the amount for his 4th tooth to two dollars.  Noah beamed with delight over the financial increase.  Let's hope this is motivation to prevent him from swallowing any more.

It certainly is different looking at Noah with a new smile.  His smile always particularly precious, now has a new character about it.  And it feels like a piece of his childhood is fleeing and I miss the days of yesterday.  Common feelings of motherhood for all mothers.   Yet, we can't remain frozen in time and while Noah doesn't blossom in milestones, he certainly grows and thrives in a variety of other ways that tells my heart he's growing up.

Noah's grandparents smoked brisket and ribs, and I attempted my own smoking of salmon for the first time.  I'm trying to branch out and try new things.  I often get so comfortable in this comfort zone I create for myself that I never leave the boundaries of what I've familiarized myself with.  The salmon was a good first effort, but perhaps I added too much salt for the brine and I certainly will consider that more brown sugar the next go round is essential.  Noah found his blend of smoked bar-b-que and potato salad delicious and was only moderately found of his pureed fruit salad.  Of course he loved his cheesecake finale.  The child with a perpetual sweet tooth. 

Noah doesn't do well in regulating body temperature.  Extreme heat and cold is problematic and always has been.  Upon the recommendation of other special needs parents we purchased Noah a Water Mat from Walmart for $19.  Was probably the best $19 I've spent all summer.  It's like having an 8x5 play waterbed type area for Noah to roll around in and offers the a cool soothing comfort from the cold hose water.  And the really great part is both children like being together which gives them an opportunity and way to play together.  It's really a super cool product that I wish I would have found years ago for Noah.  Now I have to hope it doesn't spring a leak as he's grown quite attached to it.
Noah also geared up in the Upsee to help his daddy water the flowers that were destined to suffer a demise due to heat stroke without a much needed drink.  I had hoped to walk Noah in the Upsee, however once we were suited up together it was apparent that Noah has simply grown too tall in comparison to my short height.  I think we will have to pass the Upsee activity on to him and his daddy.  I wish there was another product similar to the Upsee for older, growing children.  The entire family will be sad when we have to retire the Upsee due to growth.
We walked to the city's Fourth of July celebration which they hold in front of our house at the park each year.  We always walk down and then walk back.  They have small activities like inflatable bounce houses, live music, and free cupcakes.  We never really participate in anything, our family dynamic is so different that even in a crowd we still stand out.  It's really a quick walk there and a quick walk back - really simply to say we checked it out.  We didn't realize when we moved into this house that the city's fireworks were nearly overhead our house.   Not the best for a child with a severe sensory processing disorder.  Noah is always a gamble on how he'll react.

Surprisingly, there was no big meltdown or hysterical crying this year.  He was very jumpy with each pounding loud boom, and I am not sure he loved that feeling.  He did however tolerate the situation to get through it, and seemed to use his grandmother and her assistance with an umbrella to prevent any rain sprinkles from touching his legs a security blanket, but I assume he was likely very relieved when the firework show had concluded.  Despite neighborhood lingering fireworks he fell asleep relatively quickly. 

"When all your attention is focused on fireworks you forget there is an empty sky in which the fireworks appear." Michael Jeffreys


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