Friday, January 6, 2017

Don't Be Mercurial

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It's a new year, where some people turn over a new leaf... and well others don't. 

It appears that it's going to continue to be the same song and dance from Noah's Medicaid and Children's Extensive Support Waiver (CES).  I do try to give them the benefit of the doubt - no correction - I have given them amble time to redeem themselves.  Yet the hole they dig and the divide they place on any type of functional parent/caseworker relationship just burns to the ground time and time again.   Eight years in to this - I'm just done being nice about it.  I'm no longer entertaining any more artificial interest in how my son is doing, fake chit chat to make me feel and think they're on my son's team, no more believing not one ounce of the fluff I'm fed to stall me in the pursuit of helping my child.  I don't do games and that is what this has become.

Right before Christmas I filed yet another appeal before the Administrative Law Courts.  That makes three hearings for me in the next forty-five days, and I have another 60 days to file the fourth.  And this is just the beginning of the year and all of these requests were from 2016.  Can you imagine the trail of denials and appeals hearings that I'm facing this year alone?

I filed the most recent appeal just prior to Christmas.  Really the documentation and exhibits so blaring obvious that Noah's Community Centered Board, either has no real understanding of the State's policies, rules and regulations, or they are simply being spiteful.  My guess is likely both, but perhaps more the latter.
December 27th, Noah's caseworker called to say after receiving my Motion that was submitted to the Court of Appeals that they had a change of heart and realized they entered the denial in error.  She asked a handful of questions; how did I fund these requests in the past for Noah on our own and why were these items requested over other potential options.

I answered in honesty because that's the only way I know how to be.  God made me a lot of things but a liar was never one of them.  I explained that all these years we've fundraised for help.  Noah's maternal grandmother has done all that she's been able to in order to help when she was employed, even giving her severance pay to help Noah at they very last of her available resources, we've looked for foundations and grants to assist. It's not like parents like us have any other choice other than to ask for help from foundations, grants, and fundrasisers.  The costs of raising a child like Noah out of pocket can be more than a mortgage payment each month - especially when the State is in cost savings mode and doing their very best to withhold funding from your child.

She said that was all that she needed and that one of the missing supervisors from the review team would be in the following day to sign off on the approval and reverse the previous denial.  She also was confident that Noah's approval for these requests would come out of the 2016 CES Cap.  I was rather relieved because let's face it appeals hearings take up a lot of my time, and the Court's time when it's really unnecessary to do so for something that should be easily approved.

Less than twenty-four ours later on December 28th, that same caseworker calls to say, that they had changed their minds again and were not going to reverse their denials on either item.  Kind of like the joke is on you...

Stunned I'm like dealing with a Bi-Polar agency - that just can't get it's shit together.  They have the rational that a floor protector that prevents urine, vomit, acid reflux and Noah's drool from soaking through to the carpet or pooling on tile or laminate flooring is considered "carpet" and thereby an uncovered benefit.   They clearly don't understand the definition of carpet.   Even after providing a detailed letter from the manufacturer on exactly how different his product is from carpet that is permanently fixated to the floor, that you can neither put in the washer or dryer and that doesn't repel things like vomit, drool, urine, acid-reflux.  

A $100 Wedge pillow was also requested.  Let's just focus on that price tag for a moment.  One-hundred dollars.  A lot - but not a lot when it comes to special needs price tags.  Most adaptive equipment for Noah starts in the thousands of dollar range and I'm not exaggerating.  Any special needs parent will confirm that awful prices that are attached to things our children need.  

My mother and I found it by chance at Bed Bath & Beyond.  We felt it in the store, seen the height of it, and said I think this would just work for Noah beautifully.  We came home consulted with Noah's therapist who also agreed it was perfect for his needs.  Because Noah has a lot of sensory issues good adaptive equipment matches can be a challenge. It was a win finding a typical item that would work for Noah.  Since typical items neither have a DME distributor or a Medicaid Code they have to be sought out through Noah's Medicaid CES Waiver.  The Waiver covers items that Medicaid doesn't (or so is the theory behind the Waiver).  His CCB/Waiver denied it on the basis that it has a Medicaid code.  Even though I provided a letter from his DME representative that states otherwise and confirms what I am telling them to be true.  They insist they want to provide a medical grade wedge pillow, that will be hundreds of dollars more, have me seek that through traditional Medicaid, and then the Waiver will hire someone - a personal seamstress to make a custom cover for it that might be agreeable for Noah's sensory challenges.  Because that all sounds so much more inexpensive and uncomplicated than just purchasing a simple one-hundred dollar wedge pillow off of Amazon right? 

So, after telling me they hadn't changed their minds at afterall, they said they needed more time to investigate their options based upon me telling them that I had received past fundraising and foundation help for items such as these in the past and then maybe they'd reconsider once again.  Perhaps they were trying to find a foundation that would assist Noah so the State wasn't obligated to.  They after all do their very best to retain as much funding as they can rather than allow it to assist the very children it's designed to.  They also wanted to do research and call around and see how other CCB's handled requests of a similar nature.  

Today I received another email that they are certain now that they won't change their minds and that the denial is firm.  I suppose this is their declaration that their wishy-washy behavior has come to an end.  So now we face an appeal on these two items, with a warning that should I win, they'll simply continue to file Exception to Initial Decisions which makes the Appellate process moot.  

Yes - can you believe it that the very agency that has the power to deny something also has the power to reverse anything a Judge says?  True.  It doesn't go back before a Supreme Court Judge or stay in the Judicial System in some way.  It goes back to the State Department of Health Care Policy and Financing and they can say so what the Judge reversed the denial - we want it to remain a denial - and when that happens my friends - it's pretty much game over. 

With the exception that a family can file the matter into District Court and re-challenge the State.  Something I think they aren't prepared for me to do - but I'm so tired of being jacked around that it's likely time to do just that. Until they are penalized for their naughty behavior and called out for their incredibly unfair practices and tactics then this type of thing is going to go on and on until the end of time. 

Who knows why they can't pick a side of the fence and stay on it.  It could be that I talk a lot about my grievances quite openly and in this circle of advocacy you never really know who's team anyone is on.  You may think you've got someone in your corner and confide in them only to realize that they're playing devil's advocate instead.  It's also likely a combination of continued retribution and retaliation for me calling them put publicly on local television and trying to draw everyone's attention to the blatant mishandling of State funding that is supposed to be set aside for children like Noah.  The world will only turn the other cheek for so long.  And as more parents bravely and courageously step up and speak up about what is happening the more it points the finger right at them for literally stealing from these children.

And let's not forget Conflict-Free Management.  If you haven't heard of it:

"Pursuant to authority provided by 1915(c) of the Social Security Act, the Department has established contractual agreements about services and supports provided to eligible individuals with Intellectual and/or Developmental Disabilities. Commonly called Medicaid Waivers, the federal government, through the federal Centers for Medicare and Medicaid Services (CMS), provides approximately 50% of the total funding for these Medicaid Waiver services. The federal Centers for Medicare & Medicaid Services passed a final rule (42 CFR § 441.301(c)(1)(vi)) in March 2014 requiring separation of case management and direct services.  Colorado must comply with this rule to continue receiving these funds."  It's 2017 and they are still not compliant with Federal Law.

Self-policing is a conflict of interest, as well as well as holding true to the definition: “real or seeming incompatibility between one's private interests and one's public or fiduciary duties."

The State hides behind their lack of compliance saying it would be too disruptive to comply. They instead think that they can stay out of compliance by offering what they refer to as "extensive conflict of interest mitigation controls," like giving families "person centered" control over providers.  But let's be clear that the providers they offer to us are still contracted, limited and very much under CCB control.

So where does all this leave Noah?  Kind of stranded.  He has a list of things he needs and I mean the list is growing longer.  I don't really know where to go from here.  The first line of financial defense should be his Medicaid and Waiver funding.  But they are putting families like ours in a position of tremendous financial debt for out of pocket medical, therapy and equipment costs that they continue to deny.  And then when they're questioned about where all the unused money goes they say quick look over there it's a bird flying... look at the bird it's so much more interesting than anything that we're doing under the table.

I continue to file appeals, because that is the only way to document the absurdity of what is happening and can only hope that eventually someone in a position of power takes notice.

Love,

 


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

Saturday, December 31, 2016

One Word For The New Year

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There is something that about a new year that is a sense of starting fresh and a hope for something better to come.  A closure of past problems and complications with renewed faith that tomorrow promises greatness. I stumbled on this book called My One Word by Michael Ashcraft and Rachel Olsen.
Most of us make these lists - perhaps not on paper, or even out loud - but internally in our minds of things we wish to accomplish, change or even things we wish for in the new year.  Personal goals, silent prayers, hopes, dreams and wishes all wrapped up into what we label as New Year's Resolutions.  What we really fail at remembering is that there is so much about our lives that can be out of our control.  While we have power to some extent over our destinies there are things in life that we cannot stop or change, but how we rise to the challenges set before us,  is indeed up to each of us.  How will we process our grief, celebrate our joys, feel the sadness but not so deeply that it paralyzes us, how we make it our missions to leave this world with goodness and light and the legacy that we were once here even so ever briefly.

Disappointment comes all too frequently when we have these expectations and goals in mind without a concrete understanding that we can't just wave a magic wand and fix everything that we wish to.  We've got to work with what we've been given and go from there.  The concept of One Word is really simple.  You pick a word - any word that you hope God will work into your life all year long.

By picking just one word you never have to worry about falling off the New Year's Resolution wagon.  You don't have set yourself up for that inevitable feeling of failure or disappointment.  You get to focus on just one word the entire year.  When you're happy the word is there, when you are sad the word is still there, when you ask God for help that word is still there.  It's there always.  It's one word that won't let you down.  It's one word that you can use for comfort and guidance when all else feels lost. 

Eight years into the special needs journey with Noah, with each new year in some small way I've hoped the New Year would bring about new blessings and miracles for him.  This will be the year he sits, or walks, or self-feeds, or talks... or that I can do more to make that happen - that I'll be able to somehow find the rehabilitation he needs to make those goals possible for him.  But I forget that I'm not in the driver's seat of Noah's life.  And as much as I want those things for him, and all the New Years Resolutions that I attach to those thoughts and feeling can be so destructive to the joy, happiness and the acceptance of what is in front of us.  We're chasing a rabbit we may never reach, and fail to soak in what we have in this moment. 

I don't want to look back with regret and say I spent years chasing a rabbit that I could never catch.  You have to trust and be still and be confident that holding that carrot is good enough.  If the rabbit comes to you it will on it's own.  Don't chase it - just offer the carrot.

Thinking about what my One Word would be was hard.  I already feel like God has given me Hope.  He's given me Faith in the impossible.  He's given me this profound love that I never would have known existed without Noah. H'e given me a miracle.  He's given me humility, peace, joy and strength.  So I sat and reflected on what do I really need this year.   And the word "Relief" came to mind.

I need so much relief from these brick walls I keep hitting in my attempts to help and care for Noah in all the best ways that I know how.  I need relief from all the Medicaid and Waiver denials.  I need relief from the endless appeals hearings.  I need relief from the heavy weight of feeling like I'm failing Noah when it's the system that is.  I need relief from the financial strain of all of Noah's out of pocket medical, therapy and equipment costs. I need relief from idiotic caseworkers and inept government agencies.  I need Relief.  Perhaps more than I've ever needed it.  I've fought for long eight years for this precious human being to make sure all of his needs are met.  I fight harder than most parents are able to fight.  But it doesn't come without consequence.  I know that it is taking it's toll on my health and well-being.  I know that it depleting and draining my own personal battery.  I feel it happening to my body and my soul. I could use a little relief.    So that's my word going into the New Year.  And each time things get hard, I'm going to focus on that word.  The power of intention is real.  You can will so many things in your life to happen if you focus all of positive energy into a certain direction. 

Let's try this one word together.  Let's make this New Year's Resolution simple.  What will your word be?

Here are some options that might be a good fit for your life:

Reassurance
Consolation
Comfort
Recovery
Solace
Light
Hope
Faith
Rest
Strength
Courage
Devotion
Compassion
Kindness
Forgiveness

Find that word that speaks to you all year long.

May your New Year's be filled with warmth, camaraderie and kindness that touches the heart of all those you come in contact with.

Love,



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

All I Wanted For Christmas

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If you asked Noah, this year it would ring true that all he wanted was his two front teeth.   Seven was the year of six teeth that all were lost in a very short amount of time.  Our score was 5 of 6.  There was one tooth despite our best efforts that was never recovered.  Three of Noah's adult teeth came in very fast - like almost overnight he had new teeth.  The other three oddly have been missing for months.  In true special needs mom style, the Internet became my source of reassurance.  I quickly Googled how long it takes adult teeth to come in, as I perhaps was growing more impatient than Noah.

I was relieved to read that it can often take up to six months for adult teeth to sprout.  Although I should already know better that everything including Noah's teeth happen in "Noah Time."  Christmas morning Noah's three missing little teeth peaked through his gums all at the same time.  Kind of fitting for my Christmas time child.
This was probably the leanest gift giving Christmas that we've given the boys, but neither seemed to notice the quantity of presents to open.  I'm really blessed that the boys don't measure their worth up against other children who are fortunate to be gifted with high end toys, and dozens of gifts from Santa - I suppose that is one of the benefits to homeschooling there is no comparison or competition of other children in relation to themselves.  I didn't even have to worry about either boy even knowing what a Hatchimal was and worried if their peers got one and they didn't.  They are so easy to please, and I love that they light up with small treasures.  I'm really lucky that life hasn't told them that they aren't enough or that you're lesser because there are only a few gifts.  I think we pulled off what the heart of Christmas is about with what was within our means to provide.
Noah and Luke had a Christmas sprinkled with lots of magic.  Santa's visit certainly was a highlight.  Each year Noah get more proficient with unwrapping gifts.  It's all of his coloring book shredding that has really helped.  Although it seems like a messy activity for me to pick up endless little pieces of paper off the floor, it's really a fantastic therapy exercise for Noah and is making him work really hard at using his hands.   Therapy comes in all forms - including a child's way of play.
Noah seems most excited about his season four and five of Night Court DVD's and his adapted switch Monkey from Santa's Little Hackers.  Luke's was his five dollar sled I found on clearance and a giant orca whale that he made as his sled team.  He also like to lay on his new quilt from The Butterfly Fund.  It's amazing how much both of the boys love their homemade quilts.  I kind of figured their novelty would wear off quickly but Luke carries his around and snuggles with his and Noah's is always close by.  Just goes to show you the best gifts are the ones that come with the most love.
Christmas as always just files by in blink of an eye and becomes a memory that you file in your heart and mind.

"Blessed is the season which engages the whole world in a conspiracy of love." -Hamilton Wright Mabie



Love,


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

Monday, December 26, 2016

Noah's 8th Birthday

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My whole world can be summed up in three letters...  Son  

My son… who's eyes give me the will to fight back, even when everything goes off-track. The tenderness in your hugs give me a reason to smile, even when our problems pile. Your love is the fuel that keeps me going, and my heart beating. The happiest 8th birthday my sweet boy. 
Noah had a Buddy the Elf themed Birthday party.  Very suiting given he starts watching Christmas movies in July.  He's never been one for much of a break from Christmas.  It brings him pleasure for a big part of the year. We ordered his Elf decorated cheesecake from the same bakery that has been doing his cheesecakes since his first birthday.  I think both the bakery and us feel this sense of mutual celebration each year.  They always do such a sweet and detailed job.  And a crust-less cheesecake just for Noah.   I also splurged on two large balloons for Noah - an elf and a candy cane.  Noah adores balloons and these two are likely as big as he is.  I suppose that is the only good thing about having unnecessary eighteen foot ceilings in a ranch home.

We planned Noah's favorite dinner Chick-Fil-A.  And when Chick-Fil-A heard it was Noah's birthday they were so kind and dinner was accompanied by a Santa Cow.  Noah really enjoyed having dinner side by side with his stuffed cow.  It made him feel very special.  Noah rather purposefully rushed through dinner - because we told him that Santa was coming afterwards to say Happy Birthday.  I could tell Noah couldn't think of anything else the entire day except that Santa was coming.  He adores Santa.  Santa is everything. 
Noah had another commitment on the day he was originally scheduled to see Santa, but was blessed that North Metro Fire & Rescue rescheduled for him and offered to come on his birthday.  I can't even really put into to words how incredible it is to hear those sirens down the street and seeing Santa is arriving and watching the joy not only in Noah's face, but Luke's as well.  I wish I could box that magic - that beautiful magic into a box and just open that feeling up each and every single day.  A reminder of the pure bliss that exists in tiny precious moments.


Santa and his fire crew elves are so special to us.  Since the moment Noah moved into this home, they've always been there for him and our family.  They've given us four years of treasured holiday memories. Their love so genuine, tender and filled with understanding for Noah's unique situation and fragile medical needs.  Santa brought Noah some birthday gifts and remembered his little brother too, which was the ultimate finale to Noah's birthday celebration.  Noah just lights up when he sees Santa.  It's his most cherished yearly experience. 

Eight years has gone by so fast.  Like a blink.  Each night I look at the framed collection of pictures that we thought would be our last pictures of Noah in the NICU as I snuggle with him in our bed after his evening juice.  Noah looks at them often too as I tell him that's "Baby Noah."  And he laughs and arches out of my arms as if he's itching to physically get up and touch those photos.  Those pictures speak to Noah perhaps more than they do us.  It is as if he remembers that exact moment in time and wishes to show us the excitement over the miracle of his life.  His daily exuberance certainly lessens the pain of what once could have been for his life.  He does us very best to remind us of what is important and where to maintain our focus. 

Noah laughed into the late night hours.  I'm not sure where that child gets his energy from or his ability to sleep only a handful of hours. But secretly even though I'm often very exhausted I adore the sound of his laughter and squeals and even the sound of him kicking his side rails of his bed and me needing to flip him over multiple times because he gets stuck, it is just so mushy and joyful to listen to him even if he goes on and on for hours on end.   And tending to him all night in some way makes me feel needed and loved.  He will always need me, and I will always need him.

May year eight be filled with great things to come.



Love,




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

Sunday, December 18, 2016

The Splendor of Safe Place Bedding

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There are lots of specialty beds that are now on the market for children with special needs.  Many ranging from high-end, medical grade, residential safety beds that are aesthetically pleasing, to special needs travel beds that offer safe and secure places to sleep while away from home.  Special needs beds are one of the greatest investments of equipment that a family with a child with special needs will need for the care and safety of their child.  And often times a lot of careful consideration must be made in choosing the right bed product. 
 A new travel bed design hit my field of vision this year called Safe Place Bedding.  In pictures I was instantly intrigued with it's simple, yet clever design.  After hunting down a handful of videos about the product I was even further sold on the idea of not only how safe this product was, but how fast and convenient it was to travel with.  Our family has been blessed with invitations to travel worldwide and guest speak about our lives, share our experiences, and participate in product launches but one of the greatest worries we face every time we travel is how we're going to keep Noah safe in a hotel bed when he's away from his Sleep Safe Bed at home.   We've been fortunate that every time we've traveled for special needs engagements our hosts have taken care of that worry for us, but that wouldn't be the case if we were to travel on our own without help and coordination of the sleeping arrangements for Noah.  And it's always hard to be extended an invitation and then have to gently say you have a list of things that you need help with in order to travel. 

 Last year our furnace went out during a snow storm.  Noah can't regulate body temperature and bundling him up in blankets wasn't an option because he's a suffocation risk with pillows and blankets.  Our only option was to retreat to a hotel and ride out this snowstorm until we could have the furnace replaced.  We sought out the nearest hotel we could knowing we didn't have anything that we could take along with us in the moment to keep Noah safe in a hotel bed.  While some hotels have bed rails they can offer, Noah needs a bed that is fully enclosed or he can get trapped.  We always try to push a bed up against a wall and hope that we have a room with a bed that has a headboard so we're only trying to enclose two remaining sides, but that isn't always easy and in some respects a bit nerve wracking when we have to use pillow to fill in the gaps of the sides - knowing that pillows could pose a risk to Noah should he knock them out of place and onto his head.  What is an easy overnight stay at a hotel for a typical family starts out immediately stressful for a special needs family like ourselves just because the bed is the first problem we have to troubleshoot.

When I seen a picture of the Safe Place Bedding - I just knew instantly that it was rather perfect.  Some other competing models I always worried about as they never looked particularly convenient to me, and for some reason I was always worried about metal framing around my child while he was sleeping should it collapse for any reason.  And not to mention price points on bedding also plays a significant factor of consideration.  The Safe Place Bedding is priced modestly at $462.95 - and it comes with everything you need right down to this amazing travel bag that it is stored in.  And this isn't just like a cheap storage bag - this bag feels and looks like luxury luggage. 
 The Safe Place Bedding also holds true to all of it's claims.  It absolutely goes together in under five minutes from start to finish and is so easy that you could skip reading any instructions and know what to do (which is great when you're a special needs parent who doesn't have a lot of time to fiddle with a device to get it going).  Likewise it comes down just as easy and fast.  I like that it encases the child entirely, so it works for children who cannot sit up and roll in bed, from those who could escape from a sleeping situation and need a bed to enclose them during the night.  The bed also can be accessed and opened from either side. It covers all the bases.
And perhaps the detail that I love the most is that it is designed by special needs parents who were aiming to help their own son, and wound up creating something that helps the special needs community.   You will find the very best products on the market are designed by parents who know what their child's needs are and can translate that idea into a workable concept and design.   The passion that the founders Jon and Amara Smith have for this product is evident in investment of their time and commitment to providing a safe yet universally needed product to meet the travel needs of special needs families.

We put up Noah's Safe Place Bedding this weekend for the first time for it's trial run.  Noah enjoyed it so much he didn't want to come out.  It became like a safe cave for him.  He wanted to lay on the floor and watch TV in it, you could tell he felt safe and secure in it.  Never once did it trigger a sensory issue for him,  he had good use of space to move around and still remained secure in it.  It was a breeze to put up and take down, and something that would even be easy for Grandma to set up if Noah needed a sleep over.  And that's huge.  He now has a safe place he can sleep in besides being home bound.  I feel this huge sense of relief, as when you have a child like Noah that requires a specialized hospital bed or safety bed of some kind to sleep in, and you worry should you ever have to leave home for any reason, a vacation, an overnight stay at friends or family, or to retreat to a hotel during an emergency situation that you have a bed you can take with you.  It is something every special needs parent needs who has a child that requires specialized bedding and will inevitably use at some point in time.  And I love that the Smith's have aimed to keep their product within financial reach for families and offer resources of funding suggestions on their website.
Noah had a really good time in it.  And I can tell that he would be not only safe but very comfortable in it if we left home and it was placed on top of a hotel bed.  It hits all my check marks of a product that easy to fall in love with.  Perhaps the only thing I would have wanted on my wish list would be a waterproof removable and washable pad for the bottom, but is something that I easily could find at a retail store to place at the bottom myself - but I always love it when additional accessories roll out later on too.

Definitely put this on your list of things you need for your child with special needs.  Even if you don't anticipate traveling you never know when you'd need something like this in case of a rainy day or an emergency.  To learn more about how you can order yours click here.

Love,



  
 
 
 

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

Tuesday, December 13, 2016

I'll Hold Your Hands & Pray

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Sibling bonding is a really unique dynamic when you have one child that is severely disabled and another child that is typical.  While all sibling relationships have  hierarchical and reciprocal elements, that looks a bit differently in a special needs family dynamic.  The attachment theory very much becomes applicable between siblings, and you quickly find that a very emotional and physical development happens that has nothing at all to do with the encouragement and push from either parent for them to love, like and get along.

Although Noah is the older sibling, he has always been the one to seek comfort from Luke.  It's a beautiful kind of role reversal and a flip flop of birth order almost to compensate for the physical challenges that Noah possesses.  Luke has assumed the role of protector, best friends, advisor, entertainer, and caregiver in training.  He has mastered the art of paying close attention to Noah's laughter triggers, his anger responses, his expressions, and his vocal sounds in order to become a fast and accurate interpreter of all of Noah's needs.  Sometimes he's quicker then even I am to just "know" what Noah needs in the moment.
The older he gets the more tenderness and attention to detail I see.  When he thinks I'm busy or needing to tend to making dinner or doing laundry Luke will quietly get on the floor with Noah, thinking I'm completely unaware, and plays with him.  I can catch him whispering secrets into Noah's ear and Noah giggling with delight, he'll repeat phrases that he knows will make Noah laugh, he'll mimic Noah intentionally so that he feels the same and not different.  I can't help but take great pause and watch unnoticed from a distance at this beautiful thing they do together.  It's so pure, innocent and oh so heavenly.

Of course there are still very apparent episodes of sibling rivalry.  Luke will have moments where he is possessive of toys he claims as only his, and likewise Noah does the same.  They exhibit this by purposefully trying to keep each other toys away from the other.   And while those moments don't generally last for a significant amount of time, they intentionally do it to each other in a way as to establish dominance over the other - really like a checks and balance of their relationship.  I rarely intervene as it never escalates to a point of parental involvement and I let the two of them work out their minor disagreements which in the end always winds up with one or the other conceding and extending an invitation of play.

By far one of my most favorite things to watch is when Luke goes over to Noah in his feeding chair before each meal and holds both of his hands together.  And says "Thank you Lord for the food we're about to receive.  Amen."  And then goes and find his place at the table to eat.  To watch a little brother hold his big brother's hands together so he can pray... well that kind of makes a mom's heart reach places that you didn't even know existed.
There is so much grace to sweet moments that happen in our household.  It's an extraordinary relationship that Noah and Luke have, and I hope and pray that their bond will be forever and lasting well into adulthood.  That Noah will never ever be alone and Luke forever and always be there to hold his brother's hands and help him pray.

He's such a great little sidekick for Noah.  Even as I write this, Luke is singing a goodnight song to Noah and telling him not to party too long.

Being a Brother is Better than Being a Superhero. 

Love,
 


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

Monday, December 12, 2016

Where We Are Now

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My blog posts on Noah's blog have slowed down a bit over the last few months.  There are a handful of reasons for this.  I've taken on even more guest blogger commitments, I've immersed myself in advocacy endeavors, I'm homeschooling, and sometimes there is so much to say that it's hard to put it all into proper words so I purposefully avoid doing so altogether.  Silence is sometimes comforting.  It offers you no advice, no criticism, no false expectation of support, no artificial forms of caring, or unfulfilled promises or gestures.
The holidays - oh gosh the holiday season.  It sneaks up on me every year even though I start preparing in September and am often in full bloom by the first of October in rescue attempts to aid other special needs parents during the holiday season through various personal projects. I still can't catch my breath no matter how hard I try to prepare for all that it entails.  And Noah's birthday - always a complicated mixture of delight and emotion mixed in.  It's hard to believe we've been celebrating our Miracle eight years this year.  So much has happened in those eight years that I feel like it could have been spread over ten lifetimes.  But for better or for worse it has brought us to where we are now.  

Things continue to be challenging obtaining Noah's needs.  He is met with more denials than approvals.  I have four current pending appeals hearings lined up in the new year for Noah.   One: A VocalID denial because the State doesn't think it's necessary that Noah have a personalized voice.  Two: Mygo Leckey Tour Base denial because the State thinks it is a caregiver convenience to convert Noah's feeder chair to a transit ready wheelchair and they suggest I simply ask them for a much more expensive Hoyer Lift instead (which mind you had a completely different purpose).  Three: CarpetSaver denial because Noah's Waiver doesn't know the difference between a floor protective cover product that is machine wash and dry friendly and real actual carpet that is permanently attached to the floor.   Four: A Wedge Pillow from Bed, Bath & Beyond, because his Waiver is certain there is an insurance code for it through EPSDT Medicaid, when no such code exists for a typical item you find a local retail store and has no Medicaid contract or vendor for.  Noah also has other requests in that have gone for weeks and months with no determination or decision and the State says they have no deadline that they can take as much time as they wish.  One has to wonder if I'm supposed to interpret that as years at this rate. 

Yet, families like ours seem to be really at the mercy of a "mother may I system," that is designed largely to conserve funding or pocket it (who really knows without true transparency in the form of public audits) what happens to this money that is supposed to be set aside to help children with disabilities.  It is exhausting however to continually have to pursue benefits that should be covered for Noah in the form of continual appeals through an Administrative Law Judge.  Thankfully, the judicial system is one that I made a career out of prior to Noah's birth and an arena that I'm familiar with.  For most parents they feel defeated and lost before they've even begun.  For them fighting it through an appeal isn't always a realistic option as the process is intimidating, and in most cases fruitless given the State can reverse any ruling by an Administrative Judge with a simple filing of an Exception to Initial Decision which simply renders the appellate process moot.   And if you look back on any December blog post in the last eight years you'll find this time of year is quite popular for denials and appeals in Noah's direction.  End of year funding conservation perhaps?  One always wonders, but there is a curious pattern to my December posts.

This is the first year I'm essentially winging the holiday without a hand up.  Meaning there were no foundations or grants or charities that I haven't trail blazed through the last eight years to carry us into this year's Christmas season.  I look at Noah's Santa stash and think will it all be okay?  Naturally shopping for Noah is complicated when special needs toys cost just as much as a medical equipment these days - and you have to tenderly balance out shopping in newborn to 36 months of age isles at the toy store.  Noah cognitively is eight, even if his body hasn't been physically able to catch up with his mind - he still craves what a typical eight year old does.  His tastes in movies are age appropriate, likewise his desires in toys are the also yearning to be age appropriate.  And making the holiday season work for Noah takes a whole lot of creativity and would require more financial resources than we happen to have at our finger tips.  For most families this can spiral them into a host of various forms of depression and despair at the holiday season.  And I've always known that so I work towards helping others in order to escape perhaps that realization for own set of circumstances.  It's always been my philosophy that if you are so engulfed in helping others that your soul has little time to dwell on such things. 

But as hard as the challenges continue to be, there are still moments of pure bliss and joy that comes along with special needs parenting.  Those moments are also often hard to put into words unless you walk a similar journey.  The things that give me great pause and fill my heart are often the little things that most simply take for granted.  And I eat up those blissful moments as the fuel I need to help Noah in all the ways I can.  He's just simply a magical human being and I continue to feel so blessed to be his mother.

Love,




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