Tuesday, September 27, 2016

Burnt Pancakes Becomes the Theme

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Our alpha dog has decided that in course of the last nine weeks that she's found the need to be distraught in the night.  Thankfully, this hasn't manifested into whines, cries or barks, but she exhibits anxiety panic-like attacks that can last for hours on end with panting and excessive banging, scratching at pens or crates, or if we let her free to roam she pretends she is a race car without a finish line.  With what little Noah does sleep, she disrupts any potential quality of sleep he gets and makes him stir.  The vet says this is common in older dogs that start to lose their vision - super, I think to myself as I calmly rush to the nearest holistic vet store and buy anti-anxiety drops and CBD treats in an effort to naturally cool her jets.  And overtired me thought a quick shower before a telephone conference and Noah's speech therapy sounded grand after even less sleep that Noah has accustomed me to. And by quick, like seven minutes tops. 

Sad, that special needs parents like myself relish even a quick shower as a treat in our day.  Things were going great, I managed not to get any soap in my eyes, and had a chance to squeegee the water off the glass doors even - until Luke rounded the corner and said slyly... "see what I did."  And I'm thinking oh yeah, like you lined up all your match box cars in a row, or colored a Dory picture in your room... "I turned on the oven" he whispers.  "I did it."

I sprint to kitchen like a cheetah, dripping with nothing more than a towel and a t-shirt, a sense of relief overcomes me when I see nothing at all on the stove's surface, until I look up and realize the smoke plume from the microwave above it.  The microwave still is counting down with over fifteen minutes left making me wonder how long this child actually set it for.  I yank it open fearful of what he decided to nuke, and find six silver dollar pancakes on a severely melted green plastic plate.  The stench quickly takes over the entire house and the smoke so incredible it's like a fog storm rolled through your living room.

All the mischievous and somewhat dangerous ideas that Noah was never able to accomplish.  Things that never crossed my mind all the naughty things that a child of age five would think to do in the seven peaceful moments his sleep deprived mother used for a shower.  All I can think of is the potential plastic fume toxins that could reach Noah - medically fragile Noah who already has enough problems to contend with.  I block Noah's door like that evil monster in the movie Poltergeist so no one can enter his bedroom until the smoke cleared and the windows relieved some of the burnt evidence, all while thinking this is the perfect theme to how my weeks have been going.  Burnt pancakes is really the perfect analogy.

I think I somehow thought the older Noah got the easier it would become for me to navigate his needs better.  Truth be told it feels much harder now. When he was a baby I could put a band-aid on the equipment needs with rigged baby strollers and toys, now that he's almost eight everything is customized, and complicated and costs thousands of dollars. And everything he needs to make his life better is met with such incredible resistance from the very programs promised and designed to help children with disabilities.  And I get up each day and fight - that is literally what I'm doing.  I'm fighting with Medicaid with waivers, with vendors with DME's - I feel like I'm fighting with the world to hear me and to help Noah.

And I have all these continual challenges that I can seem to find ways around.  Medicaid approved a new WinSlate AAC device for Noah, but since his last AAC device nearly three years ago, Medicaid has put in a mounting cap of $468.68, on the average AAC mounts cost between $1,400-$1,700 and Noah needs more than one.  Not all are universal and we are struggling wit the fact he currently has no table top mount, or manual wheelchair mount.  The only one that was approved was for his power wheelchair, and that is being repaired and altered and he can't even use it full time.  The same problem complication is really true with Noah's orthotic shoes - he needs Piedro shoes where the AFO is really built into the shoe, but because Medicaid's reimbursement rate is so low, vendors have decided they will not cover them, nor allow me to pay the difference because legally they cannot bill a family for an otherwise Medicaid covered benefit - even if Medicaid will not fund the entire purchase price.  So that leaves Noah with an appointment to be measured for shoes Thursday - but us having to fund customized shoes for him that will be around $300.  The hemorrhaging of money isn't a good time - at some point it really comes down to it simply not being possible.  So when a doctor asks me why Noah's middle toes arch or his foot bones are distorting I can kindly reply because Medicaid won't help him and we don't have the money for the hundreds it will cost out of pocket for a product that he can wear comfortably and that is not a sensory challenge for him.

The State denied Noah's VocalID - a customized voice that would be a blend of his little brother's voice and his vocalizations for Noah's AAC device, I'm appealing, but I've lost track now of how many appeals I'm on - I think it's seven, but I'm so tired to think that it could be higher.  And while my batting average for Noah is really good, the State always comes in after a favorable ruling and files an Exception to Initial Decision and wipes out the appellate process. Leaving us back to square one after all of my fighting efforts.  While I think I have a good chance at over turning the VocalID denial, I expect the State will still block me.  I had asked Noah's waiver for PPod accessories for his PPod.  Earlier this year the State simply anticipated I might ask for them and entered a denial without me even submitting a request with required paperwork, citing SSA 6505, which prohibits the purchase of any adapted equipment where payment is sent directly out of the country for the item.  The PPod at that time existed solely in the UK.  Since that time Drive Medical who bought SOS in January of 2015, decided to distribute and sell the product in the US.  A move that happened in July of this year.  However they are primarily allowing an online vendor to distribute it, and the costs are a bit more challenging ironically than they would have been with a direct UK purchase.  Knowing that the State could no longer hide behind SSA 6505, I put in a formal written request for it.  I was home free for a half an hour when I got an email saying it had been approved and was being sent to billing for Noah, until I received another email saying they had made a mistake and were sending it on to the State panel for further determination and review.   I temporarily celebrated during that half hour, but I kind of already knew the other shoe was about to drop.  As really sad as it is, I've come to expect the bad news, and rarely know what to do with myself these days if anything is easy or uncomplicated.

And in my spare time, I do silly things like take on the idea that I can change federally funded programs into recognizing that families like ours need more help with TANF, SNAP, and family Medicaid, and that new IRS guidelines should be an influencing factor in policy making, or that I somehow can get Medicaid Caps eliminated for certain funding categories or find better justice for the disabled community and all these families who feel so defeated and don't have the fight drive that I have. I don't know what it is about my personality that just can't walk away from it all - I mean clearly I have my hands full just with Noah's needs that never come easy, for me to think I can take on the world almost feels like insanity. I think it just comes from deep down where I just don't want another parent to walk in my footsteps and have to fight the same battles I have had to or have shed the same tears in the name of helping their child.  I want to spare everyone from this bottomless feeling where hope gets lost.  I don't know that I can save anyone though from this pain, I want to, it's not easy to wake up every morning and know for every email you read that it's a problem you have to sort for your child, or to have the weight of the world on your shoulders to find a way to financially fund something he needs that isn't as simple as going to Target for.

So burnt pancakes it is...


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

Friday, September 9, 2016

ABC's New Sitcom Speechless Nails It!

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I won't try to minimize my growing excitement for the new ABC Sitcom Comedy, Speechless which makes its television debut September 21st.  It is incredibly rare when a television network takes on programming that doesn't just simply throw in a token disability in the plot but showcases the disability and makes the person the primary focus in the show.  The trailers have been a fantastic tease offering a realistic but hilarious glimpse into situations that are tremendously relatable if you have a child with special needs, - especially one who is both in a wheelchair and non-verbal like Noah.  ABC has done a great job with building anticipation and a developing a fan base that I think will not only appeal to special needs families but also to typical families who may not otherwise be familiar with many of the realistic challenges that we face daily.  Some situations so absurd one might think we are exaggerating for comedic effect - but oh how true it all is. 

I had the opportunity to view the first episode today, via an Amazon invitation.  Wasn't about to pass that up on a Friday.  Nope this special needs mom spent nearly 22 minutes (commercial free) laughing and relating to a day in a life that resembles my own.  And then I spent another nearly twenty-two minutes watching it again with Noah, his grandmother and Luke.  They all were glued to it just as much as I was - Noah uniquely so.  He has never in his life seen a family dynamic that resembles our own.  He laughed and was engrossed in the show.

*** Spoil Alert ***
Speechless opens as the family moves in order to provide more resources for their disabled oldest son, JJ DiMeo, played by Micah Fowler, who also in real life has cerebral palsy.  The house is less than ideal.  It's doors are falling off the frames, the deck is missing, they have a cell tower camouflaged as a tree in the backyard, and their home backs up to a very busy street and train tracks.  Yet in the name in the spirit of giving their special needs child all the opportunities that he deserves the entire family bites the bullet and pulls together to do the best they can with these sets of homestead circumstances.

Minnie Driver plays Maya DiMeo.  She is extraordinary in her role.  It is as if she literally shadowed a special needs mother for months on end, or had her own special needs child herself.  Her firm and unique understanding of her character is quite amazing.  She accurately depicts the fierce advocate drive that you find in most special needs mothers, mixed with a dash of humor, and sense of authenticity that makes her feel as if she is you.  Minnie was an excellent choice, and I'm going to look forward to watching her speed from place to place during each episode rooting her on as she continues to avoid countless and likely well deserving speeding tickets all in the name of awareness, disability rights, and unconditional love for her entire family.

Minnie's character without so much batting an eye cares very little about her reputation of being "that aggressive and difficult mom," but instead embraces it and wears the title proudly on her sleeve.  I enjoyed how she depicted our drive for change out there on the lawn of the school with her paper petition scouting for signatures all the while showing no remorse for stepping on the schools freshly planted flowers after realizing that her son's only way of entering the school building was by way of a trash ramp that the school district found was "acceptable alternative access."  Minnie's "schooling" of the staff became a comical scene that not only does a great job of demonstrating many of the illogical and unfair challenges we face as parents of children with disabilities, but does a great job of giving all viewers regardless of their family dynamic something to really think about and digest.  And that is the biggest thing the disability community could ever hope for with a sitcom like this.  It is a teaching tool for people.  I hope that it gives all viewers a half hour of entertainment mixed with food for thought so the next time they walk into someone like us they know what walking in our shoes really is all about.

John Ross Bowie, who plays Jimmy DiMeo - JJ's Dad does a great job of being Minnie's parental sidekick.  You can tell his character is quite familiar with what will push his wife's buttons like the use of the word "cripple."  You can see him roll his eyes and his body language says you just dug your own grave because my wife is about to have a field day with you.   A strong family man who stands proudly behind his wife's efforts and knows that no matter her choices that at the heart of it all she's doing the best she can.

In the first episode we get to see the classic nut case therapist.  We've all been there.  I've been there way too many times I'm not even sure how I have survived some of them or Noah either... It is good to see that the show is incorporating all real elements to things that we face daily - including a batty, overexcited therapist that would love nothing more than to be fired because she just isn't in to her job - your kid - or your family. 

The show also pokes fun at the classic "you are an inspiration," and "pretending to be inclusive" themes.  On JJ's first day of school the family is greeted by the school principal who thinks that comparing the school's change of mascot is the equivalent to representing inclusion.  The mascot has been changed from a Viking with its connotations of male aggression to a sea slug which has both male and female genitalia.  The awkwardness in Minnie's expression and her quick change of topic classic of how a special needs parent would react to the strange insinuation that inclusion was in any way related to a sea slug that possessed both genders.

The first episode also explores secondary challenges to special needs parenting.  I always say when you have a child with a disability the entire family has a disability and it will undoubtedly effect each family member differently.  Sibling feelings and emotions are explored, bonds are shown to be powerful within the family unit, and an overall showing of support makes the family strong. 

So how real is Speechless in representing the special needs community?  I'd say it nailed it - at least for me.
  • The DiMeo's move because they are trying to offer their child with special needs better resources and opportunities - we moved to for the same reasons.
  • They move into maybe a less than ideal house - needs work, off a busy street and has a camoflaughed cell tower - well isn't that a coincidence - we bought a house that needed a little bit of work, we live off a busy street and my City Council gifted us with a cell tower camoflaughed as a church bell tower just a short few weeks ago (note the sarcasm in my cell tower joy) and I'm not at all as excited about how many bars may now be on my cell phone like Mr. DiMeo is.
  • The Dimeyo's have a marriage dynamic similar to ours - I'm the mommy pit bull the daddy backs up the mommy at all times and can see the volcano about to erupt when you use words like cripple or retard... or deny our child basic rights to access.  We also bounce things off each other and provide a united front because we know our child's quality of life is dependent upon it.
  • We have a sibling dynamic which sometimes is challenging when you must devote so much time and energy to the child that needs you the most that your other child(ren) equally deserving of extra attention can feel short changed.
  • While I do certainly have a need for speed I've only been pulled over once (and ticketed) coming home from Noah's hippotherapy.  *Note to self * The next time a police offer asks if you if you can financially afford the ticket he's about to give you - say NO, not yes!"  * In all honesty I'm usually aware of the speed limit - but have bumped up my clock in my car to be 15 minutes ahead to keep me "on time."
  • I've been known to start a petition or two, or three, or four.  Or go on public television... or give interviews to papers... or well whatever needs to be done in the name of advocating for my child.  Although I don't think I've crushed any flowers in the process, but I likely wouldn't feel guilty about it either if I had.  (Way to go Minnie!)
  • I'm not perfect and I'm still balancing parenting two children with very two differently physical abilities and needs.  I don't always get it right, but I'm trying hard and so is JJ's mother on Speechless.
  • Noah is cognitively aware and just because he uses an AAC device for his communication does not mean he doesn't have a voice.  Noah recently got a new speech therapist Ben, who we both really like.  Ben is really cool - even when I couldn't understand one day what Luke was saying and I asked Ben if he happened to make sense of what Noah's little brother was trying to say.  And he sweetly replied with a smile on his face.  "He is saying God Damn."  Rather than pointing fingers at the parent Ben seemed understanding - I've since found the source of that phrase in a children's show Luke has on DVD titled Aussie and Ted's Great Australian Adventure.   But Ben had little hesitation in interpreting for me, so if Noah decided he wanted to say the word "shit," I doubt Ben would purposefully sensor him as JJ's therapist chose to on the first day of class.
  • Just because Noah is in a wheelchair doesn't' mean you have to treat him like he's a superstar.  He's not a celebrity and like JJ you don't have to vote for him as president.  (Although JJ does certainly get creative with that suggestion in order to rescue his little brother from a problematic situation on an amusement ride).
  • We go lots of places that don't have accessible ramps or rides or anything that is disability friendly... and like Minnie's character I'm always quick to point out the shortcomings of any establishment that fails to meet those needs.
The show will be a big win with special needs families and something like this is so overdue in television programming.  I hope to see this sitcom have a long run on the network.  Don't forget to tune in September 21st, and for those of you who can't wait.. you can watch it at this link. You won't be disappointed.


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

Thursday, September 8, 2016

Miracles from Heaven (Can Look Differently)

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I gave great pause to the Netflix movie that recently arrived in my mailbox; Miracles from Heaven.  It's not so much I was intentionally avoiding it, as finding the right moment in time to put myself in the proper frame of mind to watch it.  I was already was privy to reactions from other parents in the special needs community to it, perhaps I wasn't sure how I would feel myself after watching in it comparison to their feelings.  Without question if you have a child that is facing a life-threatening illness or condition, or a severe life long disability that also poses it's own set of life-threatening risks naturally as parents we pray and hope for a complete cure.  Not a temporary band-aid, not a little bit improved - but that total and complete healing miracle.
Book by Marji Jackson
The difficulty really becomes when you start comparing your miracles to the miracles of others and then you start asking yourself really detrimental questions:  "Why was their child spared and healed and not mine?"  "Why did that treatment work for another child but not mine?"  "Why did God allow that baby to go without oxygen 45 minutes and mine was only without 13, and he's profoundly disabled and the baby that 45 minutes without life and oxygen is living a normal life?"  (That last one really a true thing for me).  Early on a really wonderful lady that I've lost touch with over the years reached out to me.  A news reporter for channel 9 had given her our story when Noah was just days old in the NICU and she contacted me via email.  Her daughter, twenty years older than Noah, had survived after birth with no heart beat of breathing for the first 45 minutes of life - a miracle indeed that not only did her daughter survive, but went on to lead a normal life, talks - walks... holds down a job - even got married. Sure she had some stumbling blocks and had a portion of her brain removed to control seizure activity, but otherwise is a living miracle.  I should emphasize I expected the same would hold true for Noah.  He was born a fighter his mom equally a fighter in her own right, the odds were in his favor.  Sure they were.  How could they not be?  Months went by and even when milestones weren't being met I still convinced myself things would happen at 10 months, 18 months, 24 months, even five years later.  Because after all the possibility of a miracle can happen everyday.  In fact, sometimes I'll wake up in the morning after an incredible dream where Noah is typical in every way, talking to me and running and playing.  And for a moment I forget it's just a dream because it feels so real.

The thing is though God gave me my miracle in the days and weeks after Noah's birth.  Against all odds, with the belief that Noah didn't even have a functioning brain stem as a result of his severe anoxic brain injury, he survived when we removed him from life support.  I prayed so hard that God would spare him, and I even told God I'd take him any way that I could have him.  In my heart I accepted that I'd be okay with anything that came along with Noah if I could just please have his life - no matter how that looked.  My simple prayer was answered. Not all prayers are and I'm really blessed, so blessed that my cries for my son were heard.

Through the years I've come to accept that miracles are going to look differently for everyone.  People don't really acknowledge a miracle unless it represents full healing or a cure.  In fact many times in the past people have called me out on even titling Noah's blog Noah's Miracle since he is severely disabled and never found healing that left him fully restored and a typical child.  It is hard for others to understand and accept that Noah's Miracle came from the fact that he survived -when no one believed he had a chance.  He's still here. 

A mom still battling her own grief, challenged what about the child she lost?  Why are some granted a miracle of surviving just like Noah?  When she did not pray any less than I did, didn't beg God any less than I did.  There is no secret recipe to receiving a Miracle.  I wish there was, can you imagine how much pain it would spare all of us? Her child no less precious, no less deserving of a beautiful and full life, and cancer won.  Whether we are gifted with three minutes of life, ten years, or fifty decades, I want to believe each individual story and impact we have while we are here means something, and perhaps sometimes we've accomplished what God intended us to do with the amount of time we're given and maybe that's the real miracle.

So, I was able to watch Miracles From Heaven, without a heavy heart.  Without resentment that a family received full healing when my child did not.  I am able to find peace with the fact that miracles come in different forms.  And my miracle and your miracle aren't always going to look identical to each other.  And each day I surround myself gifts Noah has been given that serve as gentle reminders Noah's Miracle; a book re-purposed and folded to say Miracles made by a sweet friend Marji Jackson, Noah's Miracle badge that he received from a loving heart in Australia and her business called Heavenly Trimmings.  God never fails to send me reminders so that I never ever forget the incredible miracle that I have been given.
Noah's Heavenly Trimmings Miracle Badge

Many blessings and love,

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

Sunday, August 21, 2016

Racing Dreams

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The moment that those doctors sat Chris and I down in a room with a couch and two chairs, I knew before they even said it.  I could tell just by the look in Noah's nurse's eyes and their intentional avoidance of me, that the news about Noah's diagnosis wasn't going to be good.  But even when you think you've prepared yourself for the worst news possible, you haven't.  You can't.  It's impossible to do. 

It's as if a giant tsunami hits you without warning from behind, and you are literally drowning, you can feel yourself choking, struggling to breathe, inhaling water and at times just wishing you could succumb to the pain.  Then you realize that all the hopes and dreams that you ever had for your life and your child's life are drifting back out to sea, forever lost.  Gone. 

With each passing year I've felt like I'm walking the shoreline trying to find where all of it went.  Did it all sink?  Is it all just rusting away at the bottom of that endless ocean? Occasionally, I'll find a piece of a shell on the shoreline - a piece of our dreams floated back waiting for me to find it, just hiding beneath the sand's surface. 

This summer I found two broken shells; we won tickets to Thunder Mountain Races from The Chelsea Hutchinson Foundation's fundraising benefit and we were able to take Luke to the race track for the first time.   And then we found our second broken shell when Luke and Noah's grandfather donated his Mile High National Tickets to us so we could take Luke again.  But the shell wasn't whole.  Noah was still missing from the races.  At home with his respite care provider he couldn't join us.  The hot temperatures, lack of shade, only porta potties and no real space to handle his incontinence care, and his ability to handle direct sunlight and regulate body temperature, sprinkled with Noah's sensory challenges,  we simply had no idea how to make that work.
Our love story before we ever had children started over the race track and racing cars.  We always thought we'd share that passion with our children and that they too would enjoy the sport just as much as we do.  But when your dreams are washed out to sea it all changes.  Everything just changes.  Neither of us have raced in a decade, and it's been 9 years since I even last stepped foot at the track even as a spectator.   But I finally found a complete sea shell on the shoreline, that dream we've been looking and hoping we would find for a very long time.  It meant our entire family unit could be together and experience that dream. 

On a whim I reached out to Bandimere Speedway to explain our difficulties with Noah to see if there was anything at all we could do to make it work to take Noah to the track with us so he could watch the races.  I honestly expected that they'd say while sympathetic towards our situation that they simply could not make accommodations for Noah's unique needs. But they found the perfect situation for Noah and extended us an invite to come up to the track.  We went up for the Chevy Show, which couldn't have been any better.  Chris used to race a Chevelle so his passion has always been rooted in Chevy cars. It was also a moderately low-key event with less traffic and people, a great combination for Noah.  We used Suite 203, which was so nice because we only had to lift Noah's wheelchair up just a handful of stairs.  And Bandimere staff was so kind to allow us to park next to the tower so Noah would not have be exposed to the heat of the day for any extended period of time.  Noah had access to air conditioning and a fantastic view from his wheelchair on the top deck of the Suite.  We arrived around 11am in the morning and weren't sure if Noah would like it or hate it.  We anticipated we'd be lucky to stay maybe a couple hours with him, but we didn't leave until after 7pm and were the last to leave the track.
We bought concession stand food and brought it back to the suite, Noah comfortably ate food pureed pouches we brought while watching cars go down the track.  It was simply amazing.  The Jet Cars were also at the Chevy Show - and they are loud and they are fast, but Noah loved feeling the light rattle in the Suite and thought it was exciting.  We all did.  It's a really rare view of watching Jet cars from behind when they literally launch and take off down the track.  You see this giant smoke cloud coming towards you engulfing the tower, and then they're just gone, like a flash of lightening.  For me it's a really close tie between Nitro and Jet Cars for a thrill.

We had the most amazing hosts, that checked in with us through the day.  John and Christy, the ticket managers, were so sweet.  I really enjoyed seeing them throughout the day.  They felt like long lost friends that you finally were reunited with, they were so attentive and loving.
John (Ticket Manager)
And we received the ultimate visit from John Bandimere and his wife.  It's been years since I had the pleasure of speaking with Mr. Bandimere.  To us he's the equivalent of a celebrity.  We were in awe, and so honored that he took the time out of his day to visit Noah and our family while we were there.  He embraced Noah in a loving kiss on his forehead, and looked at him as if he were the biggest blessing of his day.  Mr. Bandimere shared how his best friend was currently in the hospital and struggling to get well. He went in for a heart procedure months earlier that led to complications like pneumonia and now a tracheotomy.  I could feel his pain and worry for his dear friend in his voice.  Mentioning that he had gone and prayed for him and that he had a report he was having a better day.  We know the power of prayer because a gentleman by the name of Bill, came and prayed for Noah when we took him off life support.  It was the turning point for Noah and he never looked back.
John Bandimere, Jr.
I'd ask that all of you send your well wishes for Mr. Bandimere's closest friend and offer him prayers and support during this difficult time.  There is nothing worse than watching someone you care so deeply about not doing well.  My hope is by this time next year, Mr. Bandimere will be able to tell us that his friend fully recovered and that they are planning new adventures together.

After the races were over we all played on the tracks and showed the boys how sticky the tracks can be at some races.  It's a substance that kind of makes your shoes feel like human fly paper, you just really stick to it and can even walk right out of your shoes.  The van parked just past the tower close to the tracks.  It was a surreal moment.

Certainly spending the entire day at the race track made us feel like us again.  A huge part of what we loved was restored.  I know that Chris is still itching to one day race again.  Yet, when I told him we could race Noah's van he laughed and thought I must have been serious and exclaimed "No, we can't.  What if we blow the engine?  It's all we have for Noah."  There used to be a day we'd race anything we were offered, but now we're very protective of Noah's ride.  I do hope that one day the boys will get to see their daddy race again. One never knows if I found this sea shell on the shoreline nearly eight years later, then one never knows what all other dreams we might recover someday.
I hope we can make it out to the track again with Noah.  He enjoyed it - really how could he not?   It's in his DNA.  It was such an incredible event in our lives and something we'll treasure always.  A big thank you to Bandimere Speedway and everyone who helped coordinate this special day for us.


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

Monday, August 8, 2016

Once Upon a Time

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Once Upon a Time... there existed an incredibly supportive adaptive chair called the Comfee Seat that existed in the USA for sale.  It had a big price tag;  For a size 1, the retail was set at approximately $10,800, size 2 at $11,900 and size 3 at $12,600, with a shipping cost of $650.  A price tag that left Noah's parents super sad because they knew they could never fund it out of pocket.  One amazing and lucky day, Noah and his parents had a chance to see the Comfee Seat in person - and even the factory it was made in.  His parents dreamed of the day that steadfast and caring builders would someday be making Noah his very own Comfee Seat.  However, Noah's parents had only one chance - which was to get his Medicaid insurance to recognize that this chair was a medical necessity for Noah and agree to fund it on his behalf for his daily living needs. 

His parents asked his local durable medical equipment provider, NuMotion, if they would put in a request to Noah's Medicaid for funding for the Comfee Seat but assumed the company had failed to do so.  A while later Noah's personal customer service representative at NuMotion replied that Ottobock, the USA distributor for the Comfee Seat, was no longer distributing that piece of equipment for Leckey.  Noah's parent's were extremely disappointed and sad as they could not find a comparable product.   Noah's parents were led to believe that since the chair was no longer being distributed for sale in the USA, that NuMotion never had pursued the insurance request as they were asked. But little did they know...

Eighteen months later, Noah's parents needed to ask Medicaid for a whole bunch of equipment to replace the equipment he had outgrown in his toddler years.  One of those pieces of equipment was a special tomato floor sitter with rolling base and table.  Something that years ago his parents were forced to pay out of pocket for because at that time there was not an insurance code for the special tomato products.  Medicaid raised a red flag with several pending requests and kicked-back the orders before them demanding additional information as to why the adaptive equipment before them was being requested. 

During that time, Noah's customer service representative with NuMotion informed his parents that there was an approval for the Comfee Seat (or what is referred to as a PAR) in the Medicaid system just "sitting there" unfulfilled.  All this time that his insurance had approved funding for the Comfee seat worth thousands of dollars.  A seat that would have been a dream come true for Noah.  Something that would allow him to participate in family life, something that he could use for homeschooling, something he could recline in when he was sick and needed to be upright, something he could eat in, have access to his AAC device in and most importantly that would offer him the postural support that he needs due to his unpredictable tone and lack of trunk and head support, while protecting his hips from further dislocation and above all else making him comfortable. 

NuMotion proposed using the Comfee Seat PAR that his family never knew had been approved all this time, for a Special Tomato floor sitter with rolling base and table worth approximately $1,500 as it shares the same category of insurance funding and coding.  Nearly a $10,000 difference from what was approved.  Noah's family has been sick to their stomach since learning this news.  They know if they consent to allowing the Special Tomato floor sitter to be ordered under the current approved PAR for the Comfee Seat that it blocks Noah from another adapted seating device for about 3-5 years.  And the Special Tomato floor sitter pales in comparison to the level of postural support and comfort that the Comfee Seat would have provided Noah.

Noah's family still saddened and heavy, reached out to Leckey, the manufacturer of the Comfee Seat, with the hopes that perhaps they had changed their minds and would redistribute the Comfee Seat in the USA for purchase.  But the reply came back with the news that they had no plans of ever doing so.

Now Noah's parents are faced with a really difficult decision.  They wonder if they should try to fundraise for the special tomato floor sitter and table so that it doesn't block them from a more supportive adapted seating down the line that Noah really needs way more than the special tomato seat long-term.  Or if they should say yes use that PAR, and then know that if the Comfee Seat or another comparable seating device is found he won't be entitled to an approval for many more years down the line.

It's unfair that Noah's parents were never told they had an approval for the Comfee Seat when it was still being distributed by the manufacturer for USA sale. If only they had known, all this time Noah wouldn't have had to lay on the floor for additional hours because he doesn't have the seating he needs, deserves, and that offers him the postural support he needs, even more unfair that they feel their only option because of financial circumstances it to consent to the Special Tomato in lieu of of the Comfee Seat.

His mom is really heartbroken and it hasn't left her mind for five days since she learned of this news.  She keeps trying to decide on what to do.  She feels boxed in by a system designed for failure, for support that isn't there, endless poor customer service,  and products she needs for her son but can't get, and when she gets close, the rug is always yanked out from under her.  She has less than twenty-four hours to make a decision before Medicaid reconsiders the PAR trade and Noah's customer service representative gets back from vacation and requests a decision.

This won't be the happily ever after ending Noah's family wished for.


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

Saturday, August 6, 2016

HopeKids: First Event of Blessings & Faith

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HopeKids is a non-profit organization that opened up a fourth chapter in Colorado in February of this year.  HopeKids offers ongoing event opportunities, that are free of charge, for families like ours with a child that is facing a life-threatening medical condition.  Their main mission is hope.  To give us hope that things will be easier or better tomorrow.  Hope that we won't forget the true heart of our family and get lost in days of endless therapies and appointments, to give us hope that we're cared about, loved and thought of.  Hope that reminds us that when we're fueled with kindness and happy times we are all stronger on the special needs journey.  Although Noah has been a HopeKid for several months, we weren't able to accept an event invite until the end of July.  I thought it was fitting that it was a Christian Concert event to Hillsong United with Lauren Daigle.  The invite hit my inbox early on a Monday morning, typically I'd assume it was an impossibility for us to coordinate anything on short notice... Noah needing to have dinner at a certain time and getting his dad to be on time home from work.  And then there are always the big things in the back of my mind.  Can Noah handle it sensory wise?  Will it overwhelm him?  Will he have difficulties?  Will he hate it?  Will we have to leave early?

But there was something nudging me as if I had an angel whispering in my ear.  Accept the invitation.  Make it possible.  Go - you need to go. 

Chris felt confident he'd be off work in time and I coordinated an easy dinner that still would allow us to get there in time.  Neither Noah or Luke had ever been to a concert before.  I wasn't sure what either of them would think of it, but knowing that Noah has had a love for Christian music since he was born and still to this day insists that the radio be on K-Love when he's in the vehicle, I thought our chances might be pretty good that he'd at least enjoy himself a little once he figured out what it was.
We picked up our tickets that were waiting for us at will-call for club accessible seating.  The view was spectacular.  The music loud but with a powerful message that felt as if it sent a gentle boom through your bloodstream.  Music mixed with worship and prayer.  Certainly things that were said that hit a soft spot in my heart as if God was trying to speak directly to me and using this concert to do so. There are simply days when I feel abandoned by the world.  Each and every single person.  Putting on a brave face and going it alone with a severely disabled child and his sibling in tow.  No parachute, no net to catch me if I fall, no helping hand to lift me up.  Just me.  Each and every day.  Yet, here is this person standing in a middle of bright concert lighting reminding me God was there in the beginning, he will be there in the end, but you need to remember he is also with you now in the middle.   And all the while it may feel like humanity has turned its back on our family unit because we have a child that is so different and so severely neurologically impaired - God will not.  He will be faithful even when we feel He is absent.  He is silently there.
That's the really beautiful mission that HopeKids has is to give families hope, love, support and encouragement.  They include the entire family unit, even siblings and often extended family members to attend supporting events, movie premiers, community invitations, concerts and so much more.  It also gives us a way to be with other families like ours, to embrace each other, and to celebrate joys that we otherwise wouldn't get to experience.  I love that they are based in God's faith in their mission.  And that they "cling to the promise that “Hope does not disappoint.” (Romans 5:5)"    
I sat and watched Noah so excited and eager to express how he was feeling that his head came forward in an attempt to be engaged and try as hard as he could to activate his body to work in his favorHis arms and legs waiving simultaneously with his laughter.  He was having the very best time, his little brother equally excited and in awe of the lights and music and majesty of the visual effects.  We watched this beautiful horse running in a black and white print during a song.  An image that felt serene, peaceful, and whole.  Grace in it's rawest form.  Almost as if it were a visual meditation and reflection designed to bring you back to the center of what really matters. It served as a reminder that all the noise around us is a distraction from what we should truly be focused on, the blessings that we have in each and everyday.  That God grants us the gift - the biggest gift of all of waking up another day with Noah here with us.  When you have a child like Noah you understand that tomorrow is never promised.  And it doesn't matter if SSI or Medicaid or his CES Waiver or his DME vendor is doing their best to cause me distress.  Those are all distractions from the real beauty of this journey with Noah.  Noah himself.  God wants me to put those things on the back burner so I don't burn out my flame, renew our family's emotional resources and grow stronger so we can go the distance together.  HopeKids is helping us do just that.  Serving to be the fuel we need to help us get through the next storm while giving us the rainbow to look forward to at the end.

I'm really excited about future events and hope that some will be an excellent match for Noah.  He can be a bit tricky with outdoor events since he can't regulate body temperature, and has such bad sensory processing disorder that accompanies his primary diagnosis.  While Noah did great at the concert he did try to gag and vomit repeatedly when he realized we had to stand in line to gain entry to the event center.  We left a touch early to beat the massive crowds all exiting at the same time that we knew that Noah couldn't handle.   We're hoping perhaps we'll be able to make it to a movie premiere (as Noah has never yet been to the movies yet either), or even a Rockies game as Luke is itching to see a baseball game, if we can find something that is not in the heat of the day or in direct sun.  It's always exciting to receive a HopeKids email in my inbox, it's like opening up a good surprise.  And the executive director and program director are so genuine and warm, their love and kindness makes you feel as if they have been in your life since the beginning of your journey.  They are authentic in their mission, and are bringing hope, love and faith into the lives of so many families with their efforts.

You can find out more about HopeKids here


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

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.