Friday, June 23, 2017

Remember that Every Path is Walked For a Reason

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For months now I've been weathering what I'd call a perpetual storm for Noah.  The beginning of the year Noah suffered back to back illnesses for almost 4 months straight - a common cold never being just a common cold.  Several different antibiotics were required to get Noah well.  In a desperate attempt to prevent Noah from falling ill to visitors or therapists bringing germs into his own home environment I sought out a UV HVAC lighting system that would kill germs in the air or a sneeze within 3 feet.  I lacked the funding possible to install this device, I sought out emergency funding with the State only to be put off until July before I can feasibly submit an application that likely will face a denial.

I've battled three appeals in the six months, for items that were denied in the middle of last year; VocalID software for Noah's AAC device, A Mygo Leckey Tour Base to convert Noah's feeder to chair to a transit ready wheelchair, Carpet Saver (a floor protector to protect Noah from laying in his drool, incontinence accidents, acid reflux, and vomit from his habitual sensory gag to noises like our dogs barking, or the RTD bus driving past our backyard), and a $100 Wedge Pillow that doesn't carry an durable medical equipment code.  I've prevailed before an Administrative Judge time and time again, only to have the State continually file an Exception to Initial Decision against me which overturns all favorable rulings before a Judge rendering the appellate process moot.   I've cried countless tears, tried to get angry to feed my fight drive, withdrawn from the world that doesn't fully understand my trials, and sat in silence with my feelings in order not to place burden and worry upon others. 

I've struggled through the exhaustion to complete and accomplish things required for Noah's daily care; CEU classes for my CNA license to manage Noah's nursing care, renew my CPR license, and maintain yearly competency testing.  I've scheduled and maintained Noah's therapy schedules, and his in-home therapy exercises, I've made numerous DME (Durable Medical Equipment) appointments, written more emails than I can count regarding Noah's affairs. I'm driving more than an hour one way, for a 4-5 hour appointment several times a month to fit Noah for a new ASO for his power wheelchair to help him gain as much independence as I'm able to teach and give to him.

I've faithfully submitted all of our paystubs to SSI by way of fax and certified mail each month timely, only to have them send me yet again, another over payment demand.  The anxiety that the mailman brings to me feels like it is only increasing.

I've sat in the middle of the floor huddled  by my two boys, with their eyes full of such confidence and admiration in me, as I struggle to grasp that I'm on my days failing to provide the things Noah needs for his quality of life regardless of how hard I fight for him, and short changing Luke of a typical family dynamic - something that will always be beyond my control. 

I've run on very little sleeping fuel, as Noah has had off and on again increased sleep challenges, troubleshooting if it's his numular eczema flaring up, an diagnosed ear infection, teething, or breathing complications or of course my worst fears the return of Noah's nocturnal seizure activity as the root or cause.  I hang on every hiccup, every ounce of laughter, I am glued to every sound of his movement for signs of an emergency. 

I've prayed so hard to God to offer me relief.  Just one day I'd ask him for.  I kept saying I just need one solid full day full of no bad news, and everything to be okay - just for one day.  Just so I could breathe - just so that I could remember what it feels like to have both an emotional, physical and mental day of restoration.  To have all challenges dissolve - just for one day.  I needed just one day. 

Today God gave me that one day, and for that I am forever grateful.
I fully woke up prepared for war, knowing I'd have to contact SSI about Noah's over payment.  Fully expecting that I'd be told file your request for appeal and waiver, even though fully knowing the over payment request was not my fault.  I expected a hostile conversation - as they usually go; heated, curt,  and full of disdain.  Yet much to my surprise I received a clerk on the phone who was rather pleasant and willing to verbally waive Noah's over payment demand on the phone rather than require me yet again to fill out an appeal and waiver paperwork, which saved me countless hours in not only drafting appellate paperwork but having to appear by person or in phone to battle something that wasn't my fault.  Something that felt like a weight had been lifted from my shoulders.

I connected with an beautiful opportunity for a way to have Noah attend races at Bandimere, something that continues to be a dream for us as a family.  And it wasn't pure chance, as this sweet gentleman on the phone sharing with me his own personal trials with his wife having cancer, and his curiosity about the names of both of my boys and how they came to be.  It was as if God spoke to him and told him to connect with me as he shared a bible verse with me, and reminded me that God is collecting my tears for such purpose.  I wanted to hug him through the phone.  A complete stranger.  A complete beautiful stranger sent to give me a message that I needed to hear because I've cried so many tears recently out of frustration and sadness for the things I cannot change.

But the blessings didn't stop there.  God sent me yet another stranger, who feels like this flower that was waiting to fully bloom at the perfect moment, who wants to assist Noah with the VocalID software that the State denied Noah during the appeals process.  The timing of today certainly not chance but divine orchestration of an answered prayer.  In fact, just thinking about it all, propels me into tears of relief and tremendous gratitude.  God sent help to my sweet Noah, while telling me I could rest for a moment in the fight for all that he needs.

And my mailbox filled today with only one thing.  Not a letter, not an oversized envelope with bad news, no bills demanding payment.  A box labeled with Noah's name on it.  A care package from a dear friend at the Butterfly Fund who sent him sensory socks and a gift card to Target.  Earlier in the day I was thinking about how low Noah was out of all the baby food pouches and cereals, supplements and specialized food products I get for him - and the perfect gift of help arrives.  I've been faithfully washing Noah's only six socks as fast as I can because they are the only ones that don't cause him sensory distress.  Never openly discussing that fact or advertising it to anyone.  Yet, God knew and planted someone to come to the rescue with my wish of more socks for Noah.  They couldn't have known.  No one could have known.  Pure divine intervention.
And as I sit here writing all this, I want you to know that I only asked for one day.  And I received it.  I know tomorrow I'm going to wake up to more storms on the horizon and that's okay.  I'm ready, I will always be ready.  But I feel so blessed that I was gifted with one day of rest and restoration for my soul.  And to all of you earthly angels who likely don't know that you're all connected in my day, full of rest, messages and blessings that you brought into my day, thank you. Thank you for reaffirming that I'm not alone and for reminding me that I'm connected to something so much bigger than all this.


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

Tuesday, May 23, 2017

The Freedom of Expression Comes At a Price

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There are days I certainly ache with an endless craving for comfort and understanding.  The real risk and consequence of being candid and raw about the special needs journey is that you are frequently met with criticism, judgment, and harsh comments aimed to further wound an already broken heart.  I'll likely never truly understand what motivates many to intentionally aim to hurt someone.  Maybe it's an indisposed thrill of some sort to spend energy on attempting to emotionally injure another human being - I'll never truly know no matter how much thought I give to it.  People love to take jabs at you however, especially when they sense any kind of difficultly in your life's story and journey.  It's like the world has lost touch with what it means to be sympathetic, empathetic and human.  Words can be blatantly cruel and comments can be deceptive in artificial compassion and support.  When I'm authentic in my feelings and experiences as a special needs parent what I'm often throwing out into the universe is really a reflection of a desire for connection.  It's natural to crave benevolent affection - especially when we walk in a hardened existence among insurance denials, financial trials, providers that see your child as simply another cerebral palsy head count, or a child you've simply heard of but never really took the time to know, love and adore, and when we are lacking any real consistent, genuine friendships and meaningful relationships.   Ever wish the world would wrap you up in a hug provide unwavering comfort, love compassion and understanding?  I do.  I wish it a lot. 
But what I'm often met with is back handed advice, a suck it up buttercup response, you're drowning us all in your negativity, or that I'm simply selfish because somewhere out there someone must have it harder than I do.  It becomes a contest of my pain trumps your pain.  We fail to realize that we're all on the same playing field and that pain is pain.  Whether you lost your dog who was your best friend, whether you just lost your home or a job, or are facing a divorce or a dissolution of a treasured relationship, or are coping with the challenges of special needs parenting.  Pain is pain.  It just is. 

Why should there be such consequences in being straightforward about our lives? Within a twenty-four hour period after posting about one of Noah's final appellate losses on social media, despite my every effort to take it to the very end of what I could do I was greeted with three messages aimed at inflicting further emotional distress.  One of the commenters expressed that I had a "pour man's mentality."  And that if I simply worked harder, or "got off my ass and quit mooching off the government" I could afford all of Noah's needs without needing Medicaid's assistance. 

A second commenter found that I had was being selfish for expressing difficulties when countless people lost their lives hours prior to my post in a bombing in Manchester, England and that I had no room to complain about anything. 

A third commentor expressed that I'm continually negative and that I'm drowning everyone in negativity all the time.  And that it's my fault that things are not going well for Noah and that I'm quite the terrible parent because if I vocalize any hardship in the special needs journey that I'm placing blame on Noah for it and how terrible that is.  For the record I've never placed blame on Noah for anything - but people read into whatever they choose, whether it be real or factual and make gross assumptions based on things that simply don't exist.

That's really the price you pay for putting your feelings out in the great wide open.  You set yourself up to be unwillingly attacked and blindsided by people whom you've never met, and who have no real clue about your life in any real way.   I don't know how to censor myself into other people's idea of what they find acceptable to share.  I don't know how to sit quietly in the stew of special needs pain, I don't know how not to share the incredible triumphs that can exist in our day if our child does something so remotely awesome and something they were completely physically unable to do the day before.  Discussing the reality of everything from the highest of the highs to the lowest of the lows makes me real.  It makes Noah's story real.  And if you're reading this then you in some way need to hear it or you wouldn't be reading it.  Whether I'm offering your courage to get through a hard day, or you come to learn more about a little boy who defied the odds and was granted a miracle and chance at life, or whether you need to use me as a verbal punching bag to make yourself feel better - you come regardless because you need something from what I write and share.  I'm not looking for endless popularity in sharing Noah's story or my own personal feelings about being a special needs mother. 

But kindness, support and love is forever and always welcomed, noticed and appreciated.  Strive to build others up not knock them down.  Please remember the The Three Gates of Speech:
At the first gate, ask yourself “Is is true?” At the second gate ask, “Is it necessary?”
At the third gate ask, “Is it kind?”

And if you're fancying sending me a note that's really lovely, but let's shoot for it to be kind and supportive - because every special needs mom can use more of that. 


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

Wednesday, May 10, 2017

Permission to Fall Apart at the Seams

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People like to use that analogy that hard times can't last forever like a storm that eventually ends.  But, I swear to you after you join the special needs parenting club life becomes the never ending storm.  Think of it much like Catatumbo lightning storms in Venezuela, a continuous thunderstorm that has unfolded at the exact same location for 500 years, with your child being the only source of sunshine and beautiful luminous rays that peak out from the always present ominous dark clouds.

Noah is on day ten of problematic sleeping.  And by problematic I mean beyond what is not normal for him, far beyond what will always be not normal for most typical children.  When anything is remotely a little off with Noah it puts me in a place of such watch guard.  I remain haunted by words and predictions regarding his life expectancy.   The what if's have a tendency of eating away at me at three a.m. in the morning.  What if I don't hear him and he is struggling?  What if I miss that his breathing is different?  What if I miss something.  What if... 

The rest of the household seems oblivious to the nighttime stresses that Noah and I share.  The dogs sleep curled up peacefully, Luke remains nestled against his favorite stuffed orca whale and clings to his owl night light, Chris snoring off and on again but never once stirring when I get up multiple times to re-position Noah or to hold him to make sure he's still responsive all while trying to diagnose  a problem or problems I cannot see or touch or understand but that I feel are there.   Part of me festers a touch of resentment because only Noah and I share these complications together.  By the time Noah and I are both so collectively exhausted we're into the early morning hours and while Noah can continue to sleep a few hours longer, my day starts with his little brother who is eagerly awaiting the days activities just as soon as the sun comes out.  I'm not sure they make a concealer that can honestly come close to touching camouflaging sleep deprivation and the worry from my face.  Yet, I have faith that cosmetics can disguise the very real struggle written all over my face and continue to make myself presentable to the world. 

In the midst of my evening worry I still have to contend with all of the problems of the day; Noah's nutritional supplier refuses to carry a doctor prescribed drink, and apparently no other companies will supply it either due to Medicaid funding and codes.  Leaving me having to research an alternative for him to approach his physician with as a plan B.  And Plan B cannot be that I pay for it out of pocket.   A custom seating ASO appointment for Noah that is an hour drive each way, coordinating the transport of a power wheelchair he can't even use because the seating system is so small that he no longer fits into it.  Doing an evaluation with a room full of people who are completely unfamiliar to Noah who want to touch his spine, his hips, see how he moves while causing him to gag and vomit on sensory overload.  All for a determination that was visually obvious just by looking at him without the need to touch: Noah needs a new molded ASO, and something that has to be re-requested through Medicaid.  Something that will take up to 12 weeks for a decision and that could come back as a denial like everything else does rendering his power wheelchair permanently useless.  A new Asssitive Technology Professional or ATP as we refer to them as with Noah's DME (Durable Medical Equipment Provider) NuMotion, suggesting to me that I simply troubleshoot Noah's high tone by using folded up towels to prevent him from crossing his legs and to counter his sensory issues by laying soft fabric over an aggressively hard seat in his wheelchair system as he knows that Medicaid will not approve a pummel or a new softer seat for Noah.  The suggestion feels like he's rubbing the worst kind of salt into already raw wounds.  No matter how hard I try or look or wish or pray for this magical team of warriors to stand by my side and help me - it just never happens.  No one cares, no one bats an eye at Noah's pressure sores caused by bad wheelchair seating, no one seems bothered that he's doing without because of Medicaid denials, no one is ever in my corner.  I have no cheerleaders, no friends, no family (with the exception of my mother who certainly does her best to be there in any way that she can be), it's lonely and tiring and gives you the perpetual feeling of defeat, isolated and continually unaided.   And there are days when you realize just how much you lost in this world the moment you became a special needs parent. 
I come home to address emails waiting - all lined up having to deal with Noah.  I write his ATP and include pictures of items that need to be replaced on Noah's adaptive equipment.  Noah's feeder chair split the fabric at the seams which has exposed the plastic abductor between his legs that are now rubbing him raw.  The response is perhaps we need to come out to schedule a time to look at it rather than taking my word and pictures seriously.  I'm good at knowing what I can sew and fix and what I can't.  I have to be pushier and more aggressive than I like to be in my response to provoke action on the parts of others to take mercy upon me and help my child.  How I feel like my dream of having someone - anyone help me in the ways I need help is dying a slow and painful death. 

Then in the middle of me doing a remote call with Noah's speech device technicians to troubleshoot multiple problems with his device, a light bulb goes off as to what might be contributing to Noah's increased nightly disturbances and I remember that he experienced an event that could have caused water in his ears and perhaps an ear infection might be a potential factor (although likely not the only factor).   I attempt to schedule an appointment only to be put off for two days due to lack of physician availability by the new call center that continues to be a thorn in my side.  A mother that never takes no for an answer again must become less than friendly on the phone, aggressive, pushy, and borderline obnoxious to get someone to help me with a sooner appointment - something I know is available but lacking due to the right hand not working well with the left hand. 

I consent to any doctor that is available which happens to be one Noah has never seen before.  I arrive to deal with a new nurse who knows nothing about Noah's severe sensory processing disorder and despite me warning her that attempting to take his pulse ox and scan touch his forehead for a temperature will cause him to gag and throw up, she does it anyway even when I tell her to back off and give him some space so the gag doesn't turn into a vomit.  She ignores my warning and parental demand and Noah proceeds to throw up his blended pureed Panera lunch that his grandmother purchased for him.  We wait longer than expected for our appointment, and when the doctor comes in she insists that the pulse ox be taken even though I warn her that Noah will throw up.  Noah offers her a classic gag warning multiple times. The doctor says she is not afraid of a little vomit.  When Noah throws up it's not so little, and everyone should be afraid even her because Noah is an aspiration risk every time he does vomit like this.   Yet she doesn't back away, offers me a chux instead and Noah proceeds to vomit again because he's on sensory overload and no one will give him a chance to calm down and relax and get to know people who are strangers to him that he's never seen before.  Given a little time and space both of those vomit episodes could have been avoided.  But no one listens to the mom that knows her child like the back of her hand.  My expertise in my child goes without validation or recognition. 
Noah's diagnosis: bacterial ear infection or (swimmer's ear) in his left ear.  Perhaps a partial answer to Noah's increased night time difficulties.  Ear drops are prescribed.  Something Noah has never had before and I'm dreading the anticipated sensory feedback this medication will bring him. I drive home wishing I could curl up in a little ball somewhere where no one could find me until I could find a way to keep breathing.  I choke back the tears that want to come like an endless waterfall, only to realize my husband is calling me to tell me we owe hundreds of dollars in our cash reserve line of credit and that we have to find a way to pay for $433 of car repair for a broken sway bar on his vehicle.  Instantly my mind races towards the email in my inbox luring me to buy a stripped down floor model wheelchair that has zero accessories that Noah would need and knowing that it's so far fetched that I have any purchasing power whatsoever to help Noah in any capacity beyond Medicaid.  I feel bound and tied by both my hands and feet.  Overwhelming feelings if I can't even help my own son, what good am I to other parents and families that I try to assist.  And while I have all this overflowing knowledge, skill and talent I still feel so incredibly helpless.  My first instinct is to withdraw from the world which feels like it's perpetually working against me. 

I get to the pharmacy drive thru only for them to tell me they need an hour to prepare ear drops for pick-up.  So I drive Noah home and then back again to the pharmacy.  The attendant says there is a note in the system saying I need consultation with the head pharmacist.  She comes to the window to ask me what my questions might be, I re-iterate I don't have any but that their computer system seems to insist that I do when I don't. She nods and shakes her head simultaneously to reflect that she doesn't believe my explanation and looks at me like somehow I must have changed my mind about having questions. 

Without my mother's assistance both pealing potatoes and watching Luke so I could tend to Noah at the doctor's today, we would have gone without dinner being made.  Somehow my supermom skills are sliding and accomplishing everything seems to be growing harder.  All the while I secretly ache for someone - anyone to give me permission to fall apart at the seams and tell me I can sew myself up tomorrow in order to keep going, no one does.

And tomorrow I start the entire process over, perhaps with different appointments, different emails, and calls to return.  But much the same hurdles as the day before.  "I am made up of two worlds; one in which I exist to hold everyone together, and the other where I watch myself constantly fall apart." K-Piper


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

Tuesday, April 25, 2017

I Don't Know How I Do It, Either

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I'm listening to the rain hit against my broken window panes and I await nervously a window well that has rusted through to fill up with water.  A reminder that I now lack any financial resources to make any reasonable home repairs because I have a severely disabled child that needs more help than I can fund out of pocket.  A feeling that things are crumbling around you and you sit just powerless.
The thunder grows closer and prompts me to acknowledge all the things one cannot see, but that still have endless ramifications.  I can feel the earth shaking and rumbling.  The clouds growing angrier and swelling with water - perhaps a small consolation that the earth understands these intense feelings that I manage on a daily basis. 

I haven't written a personal blog in a while - almost a month to the day, actually.   Unusual for me, as I always have something to say, but I remain very aware that I can be pulled to say 'too much' especially in moments of pain, anger and sadness when I write.  Lately I've just been emotionally drained by all of Noah's continual Medicaid and CCB denials.  I continue to win and reverse these denials before an Administrative Law Judge and every single time the State finds the need to file something called an Exception to Initial Decision and reverse the Judge's ruling.  I'm still in utter disbelief that they are permitted to essentially over-rule what a Judge says.  It's a power they shouldn't have, but do.   I've pounded every avenue I can think of to stop this madness; news media, legislators, local government representatives, advocacy groups, disability law attorneys - you name it I've tried it.  And while my name and Noah's story is quite out there, the general feedback is while we feel for you our hands are tied.   Noah has become a casualty of a broken system.  A system that is failing on him on so many levels.

I hear the statement a lot:  I Don't Know How You Do It. 

The truth is, I don't know how I do it, either.
I do it because what other choice do I really have?  I do it because my child depends on me for every breath he takes.  His whole quality of life and well being depends on me being a fighter - whether I want to be or not.   What I have to do to provide for Noah and his needs isn't optional.  I do it because I love him more than anything else.  I do it because sometimes I have some fantasy that I can promote or inspire positive change.  I do it to give other parents hope in the darkness.  I do it because God dealt me this hand and I'm playing it the best I know how.

There is so much in that statement of I Don't Know How You Do It, that really feels like it minimizes all that I do go through in a day. While you think you're building me up and making me feel like a superhero mom with a simple phrase - it still feels like you're doing nothing more than thanking your lucky stars that you aren't me or could never imagine yourself in my place.  It puts me on a pedestal like I deserve a crown for enduring such challenges and hardship.  I'm so ordinary - what happened to me could happen to any mother.  While certainly Noah has transformed me into someone I never dreamed I'd have to become or be, I'm a better person because of him.  Such lessons that God probably would not have been able to show me any other way.  Lessons I wish everyone could learn, feel and understand.  The world would be such a kinder and more loving place if only you could feel what I feel and experience.   Cliche' it remains that good old statement if only you could walk a mile in my shoes...

I've been sulking perhaps a touch over continual special needs defeats.

Therapy challenges, denials left and right literally for everything Noah needs, me lacking the ability to be successful with fundraisers, the realization that there are no more foundations really left to hit up for help,DME's that really could care less about your child's needs, physicians that think it's a breeze to go get an xray across town or give you advice to let your child ride out a 105 degree fever and that an entire body rash isn't of any concern... knowing that I owe on our bank's line of credit which we continually borrow from month to month just to try to get by for Noah - the endless cycle of damn this just all sucks.  And that statement "I don't know how you do it." looming in the back of my mind each and every time I hear it.

And it's not just a phrase designed for special needs parents.  You'll hear it for the single parenting mom juggling it all without help; you'll hear it over the college student who is working full time and simultaneously coping with the loss of both parents; you'll hear it about the couple that is on their eleventh miscarriage but keeps trying - people use this phrase for everything in the "moment." It brings absolutely no consolation to the person on the receiving end of this statement.  It doesn't make us magically feel better.  It most certainly doesn't make us feel stronger.  If anything it's a reminder of how truly alone we are, as you're simply sitting on the sidelines wondering "how we do it."  But I bet all this wondering doesn't keep you up late at night like it does us.  And you wondering doesn't ever inspire you to say maybe she can't do it all - how can I help her?

I wonder too.  I wonder how I'm able to get up and put one foot before the other and keep going, how my drop tired self finds the energy to fight endless battles, write legal pleadings and attend court hearings, respond to countless emails, coordinate continual appointments, juggle all of Noah's therapies and appointments, not shaft or leave his little brother's needs behind, be a great wife, amazing partner, provide for my family's needs; cook, clean, do laundry; tend to the yard, homeschool two beautifully unique and smart boys, trouble shoot all of the family's problems, find solutions and remedies to anything that is wrong, and find time to help other's in need.  So yeah, I don't know how I do it either..... but, I just do.


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

Sunday, March 26, 2017

Crashing a Public Women's Restroom in Disability Style

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We recently traveled with Noah, it's not easy.  In fact, although I'd like to say that perhaps we gain more skills on how to do it better each time, Noah throws us a new traveling curve ball because he likes to be a tad unpredictable. Just when I think I've found away his take off and landing sensory vomiting episodes with Motion Ease, a Vomit bag, and a bib to best protect his non-FAA approved Car seat (yes I'm a rule breaker for my child), from being covered in a sensory overload evidence, he'll do something he's never done before - just to keep us on our toes I'm sure.

I took Luke to the bathroom at the Orlando International Airport.  I couldn't find a family restroom the best that I tried for Noah.  I refuse to place him on a bathroom dirty floor to change him - I just can't do it.  I can't.  So I recline his wheelchair the best I can and it takes both his Dad and I to change him one lifts the bum, one switches out the old with the new, one holds him so he doesn't flop out, one pulls his pants up, one hollers to Luke to just stand there and not touch anything that isn't sanitary.... you get the idea.  It's not easy, nor a picnic or fun.  And it could be so much better if proper Changing Spaces were in place that allowed us to make this easier and change Noah with some dignity.  But until the world catches up with our needs we're doing the best we can.

While taking Luke to the bathroom I realized that the handicapped stall in the women's restroom was unusually awesome and rather perfect for our changing needs for Noah.  It was huge.  And by huge I mean had it's own personal sink in it, room to turn around, it probably could have accommodated two wheelchairs to be honest.  It would have made a decent family bathroom but instead was tucked away inside the women's public restroom.   I went back to Chris who was sitting at a Ruby Tuesday's table feeding Noah prior to our flight.  Told him I found a bathroom for Noah - but it was inside the women's restroom.
He looked at me like you're really going to attempt to change Noah all by yourself?  Until I gave him that look that was like "nope, buddy that's not what I had in mind."  Without me even saying a word, he's like "oh hell no, I can't go into a women's restroom."  I said, "we have to do this." 

He shook his head in disbelief of what I was proposing. I wanted him to just waltz in a public women's restroom.  He looked at me and said "are you trying to get me arrested, so we can't go home?"  Funny as that may have been (although I would have put up the bail money if needed), I was quite serious.  He was going in that bathroom and helping me change our 8 year old wheelchair bound child even if I had to push him the whole way into that stall.   No, wasn't an option. 

First I thought, well perhaps I should announce my husband's presence to all the ladies in there. But then I was like nope.  Advanced warning wasn't needed.  We're a family, he's not a bathroom threat to anyone.   Chris, walked behind me like a shrinking violet.  I kept telling him to come on already.  He walked like a sloth, dragging his feet in utter terror.   I was somewhat amused with his extreme discomfort about the situation.  And even more amused by the looks we received by other women in the bathroom.  I much didn't care.  I was standing my ground and marching into bathroom battle.  Some jaws wide open, some pretending to look away but then glancing my direction.  Little girls not even so much as thinking twice, because at young tender ages they haven't yet developed a sense of discrimination or dislike for differences yet.  Chris hustled into hiding into the large disability stall - he stood against the wall looking at me like he couldn't believe I was forcing him to do this.   I ushered Luke into the stall told him to stay in a corner with his hands clasped in in from of him and not to touch anything with germs while we worked on helping Noah.  Luke follows directions as if I put him through military school at age one.  I had no worries that he'd leave his corner germ-free post., which was great because I could place all my focus on changing Noah with the help of his Dad.

Noah's diaper change was a little bit messier than we had anticipated it would be, which always presents an extra layered challenge trying to do this while he remains tilted in a wheelchair.  It sucks really.  I won't play it up as anything less.  But the main goal is not to fumble our precious Noah onto the floor when we do this.  It took a bit longer to change him, but was really thankful for the sink inside the stall that certainly helped the situation.  Chris did his best to whisper as if was trying not to give away his location.  I laughed under my breath likely about the challenge of changing Noah in this way and having my husband backed against a tremendously uncomfortable situation.  If you can't laugh about it all, you'd lose your mind.  Laughter is important.  Never fail to laugh about the hard things.  I promise you it helps.

After Noah had been taken care of, and Luke was given permission to come out of his germ free corner, Chris looked at me for direction.  Part of me told him he should march out first just because I wanted to see everyone's reaction.  There isn't much like true shock value of a guy in a bathroom with his disabled child and family.  What fun right?  People need to see more of this - really they do.  They need to see how hard our reality is.  Why hide it from everyone?  Perhaps if I showed them enough things would get easier for us?  Or not -

But I took one for the team and just told him to follow me out.  The look in his eyes said could you please at least hurry me out?  It is honestly really sad that we've placed so much gender stigma on bathroom situations.   We all have to use one - and we all have different body parts.  So what?  I've used plenty of men's bathrooms at events and concerts back in the day when the women's bathroom was line was to eternity.  And the men were really great about it.  Wasn't there picking up a date (nor am I interested in looking at anything I shouldn't be)- I just had to pee really badly.   Will Noah's daddy ever get over the shyness? I doubt it.  Bless his heart he's just sweet in that way.  And cares a bit too much about what people think.  However, I have full faith in him that if I wasn't around he'd have the courage to go the distance for Noah and entering a women's bathroom if need be to get to the only and best changing location for Noah on his own.   He could do it, if the occasion required it.  He'd do anything for Noah, that much I know. 

That's why I chuckle whenever I see people have bathroom gender debates.  You all haven't a clue.  None, zip, nada.  Everyone wants to view things as black and white, and there are so many shades of grey in life.  We're so quick to judge, point a finger, and increase someone else's hardships and difficulties that we lack tolerance, patience, understanding and above all else kindness. 

Luckily for all the ladies that were present they didn't utter a word, although mind you I was ready and most certainly would have put anyone in their place that dared to question or say something about my husband entering a women's bathroom to help me with our severely disabled child.  I dared them to do so and shot back glances in the direction of all those that looked like they even might think about going there.  So the next time ladies that you see a guy in a bathroom - especially with a young child or one that is disabled.  Cut him a break, not all daddies are entering a bathroom because you think they're a predator.  Just calm down.  Do you bathroom business and move on. 

And for all of you that continue to remain uncomfortable with the idea that I'm now forcing Noah's daddy to enter women's restrooms if need be - then please fully support Changing Spaces worldwide to give us adequate changing space for Noah, so we don't have to make you feel uneasy about our situation.  Same with the dudes - if I think your bathroom area is equipped with what I need... I'm going in... wink wink. 


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

Thursday, March 16, 2017

I Can Touch Myself

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For all of that clicked on this because you thought the title was naughty, I assure you this is a completely G-Rated Post.  Noah has been doing a lot of alternative therapies since he was thirteen months old.  We still have mixed some of his therapies with traditional therapies at times.  But Noah has always found more success and more contentment with what insurance companies deem "alternative therapies."  Also really known as therapies Medicaid refuses to pay for.   This of course throughout the years has contributed to the financial hardships of not just our family but all families like ours.   However, it's kind of like those credit card commercials you see on TV; Therapy $5,000, Gas to get to therapy $500, watching your child do something for the first time?  Priceless.

No, for real the feeling is quite breathtaking when it comes to witnessing your child do something that he or she could never do the day before especially years after they were physically supposed to be able to meet such a milestone.  We've been doing a therapy for a couple years called MNRI with Noah (The Masgutova Method of Neuro-Sensory-Motor Reflex Integration), which has hugely benefited Noah's life.   We added it to the line up of Acupuncture, Hippotherapy, Warm Water, ABM/Feldenkrais, Cranial Sacral, Conductive Education and the other long list of out of pocket therapies throughout the years for Noah.  And nope Medicaid doesn't touch any of it. 

It's been my dream to get Noah to the MNRI center in Florida for years, but financially I don't think we'll ever make it there.  Most camps run about 8K-9K a session and Noah would need go multiple times.  But we're so pleased with the progress he's made with his local MNRI practitioner.  Noah adores her - they are close friends which is great when Noah forms a bond with therapists that forms into a close friendship.  Noah's been having lots of reflex break through lately.  Alternative therapies are like that - it's like one day the wires in Noah's brain connect and re-wire themselves and suddenly something he couldn't do yesterday he is doing today.  The brain is an amazing thing.  And Noah's continues to learn and adapt ways around his global brain damage. 

It was like almost overnight and Noah went from not being able to get his hands to his face to being able to swipe and touch his face all the time.  This of course is posing new problems like him scratching the bridge of his nose and chin, and now that he is able to reach and touch his face he's more susceptible to germs if someone touches his hands and he then touches his face.  In fact, for the earlier this year, Noah has been battled a cold that started with him that he so kindly shared with the rest of the family.  My best guess is that we were doing interviews for a new speech therapist and someone physically touched him and transferred a germ to him (even though I have a hand washing policy upon entry) that is voided if a person decides to chew a finger nail or rub their nose after they wash their hands and then come in contact with Noah.  It really then defeats the purpose of my hand washing policy.

While I'm ecstatic that Noah can now touch his face, I'm of course a tad nervous about this new challenge.  People generally like to touch Noah's hands oddly enough when they do touch him.  I suppose it's natural instinct to touch a special needs child on the hands rather than patting them on the head like a pet or something.  Although really I wish that people recognized you should NEVER touch a special needs child without explicit permission and/or invitation from the parents.  In Noah's case germ risks combined with a severe sensory processing disorder does not make him a favorable candidate for unwanted touching. 

So in true mama bear style now that Noah can touch himself, I searched out little warning tags to plaster all over Noah's wheelchairs or adaptive equipment to serve as a do not touch the merchandise reminder.  I know people are likely to think I'm crazy.  And I'm more than okay with that.  It's my job to protect Noah in every way I can - including from any unwanted germ transfers.  It's not easy on him to be sick - this last time it required three doctor's visits and multiple pulse ox checks, and tons of medications.
I found these great signs on Etsy and Kind Sign Inc. that will put people on notice (or so I hope) to remind people touching Noah isn't a good idea.  Has it helped?  No not so much, since putting them on Noah's wheelchairs his legs have been rubbed, his head continues to be petted like he's a small puppy, and his hands picked up and caressed by strangers in parking lots.  And it happens so fast I can turn my back for a second to get something from under his wheelchair...  and the touching is already happening.  But maybe it's going to decrease the amount touchy business - I don't know that there is much more I can do.


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

Wednesday, February 22, 2017

Bath Time Just Got a Lot More Fun: Introducing the Splashy by Firefly!

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Firefly debuted it's fifth piece of adapted equipment in it's expanding line of equipment geared to offer children with disabilities aimed to provide greater opportunities of family participation.  The Splashy, a new bath seat, follows a trail of successful equipment; the GoToSeat, Upsee, PlayPak and Scooot.   The Splashy launched January 31st, and special needs parents lined up to purchase the latest addition in the Firefly line.

The Splashy retailing at $399.00 USA dollars (including shipping and handling costs), makes it a favorable choice for many parents who face a multitude of out of pocket medical, therapy and equipment costs.  There was much speculation and buzz surrounding Firefly's choice in pricing and the special needs community was pleasantly surprised when the price of the Splashy was announced.  Firefly maintains a commitment to make special needs equipment as affordable as possible for families.  

What makes the Splashy so unique from competitor models in bath seats, is it's simplistic design, it's ability to be universal to meet the variety of multiple different postural needs that exist from child to child, it's ability to be extremely travel friendly, light weight, sits flush with the bath tub floor to allow a child to be completely submerged from the waist down, and of course most importantly offering children with special needs a typical bath time experience full of fun, opportunity and family participation.

Noah received his Splashy a few days after the launch - shipping continues to be fast and timely with Firefly and items are dispatched quickly.  In true Firefly style, the box came printed with the Firefly's logo and the Splashy advertisement on the box making it an easily identifiable fun package to receive.  I decided when I took it out of the box that I was going to put it together without even glancing at the provided instructions.  I wanted to know exactly how simple or complicated the bath chair was going to be.  It came in four sections, the back, the bottom, the base, and harness and supports.  The back and bottom thread together easily and snap in place, the back and bottom slide into place in glider sections for the back and bottom to provide support.

I was able to put it together in less than five minutes.  Extremely simple.  The Splashy is designed to accommodate children from age 1 through age 8.  I was skeptical of how Firefly would be able to essentially build a one size fits all bath seat to reduce the costs for special needs parents having to replace a bath seat as a child grows.  It has bubble cut out outs all over the Splashy in order to make it customizable to the size both in width and height to meet each individual child's needs.  While the recommended age limit is 8, Noah can easily be in this bath seat for a few years longer.  The weight limit is 30kg or approximately 66lbs.  Most children like Noah tend to be on a lower weight growth chart and it is typical for them to grow out of equipment due to height before weight limits become a factor.
The Splashy currently comes with a standard 4 bumper guards, however children like Noah often require extra supports.  Firefly will be providing the option to purchase extra bumper guards for parents wishing to obtain more than four bumper guards in March of 2017.  Something, I'm really excited about as I think that will be a wonderful option for families wishing to provide a little extra lateral, head or hip support.

The Splashy can convert from a five point harness to a 3 point harness depending upon the child's needs.  It has 26 different recline options, that are small groves in the back of the chair.  I am using the Splashy on the lowest reclined setting, which still keeps Noah's head well above the water line. 

One of the cutest features is that the Splashy comes with a little rubber ducky which I think is a sweet feature that Firefly has included a toy as a part of the packaging of this bath chair.  I really like to see special needs equipment vendors adding little touches to their products that make children feel included, important and thought of.  It makes the child feel as if they received a gift, not just a device that is required for their safety during bathing.  I must say that our son adored the little ducky and did his best to use his hands to chase it as it went around and around in our jetted tub.
I like that Firefly continues to design products that have playful colors and the ability to mix and match depending upon the family's color preferences.  Most special needs equipment is pretty standardized in colors and often times not tailored to the child's personality, the home's color schemes, or the family's wishes.  I love that Firefly is giving parents options to chose from.

I've received a lot of questions from other parents about the Splashy - below is a Q&A:

Q:  Is the Splashy covered by insurance?
A:  Not at the present time, but Firefly is working on that at this very moment and hopefully in the near future it will be.

Q: Does it have a headrest?
A:  It has bumper pads that you can position to be a head rest either on the sides or behind the back of the head.

Q:  How lightweight is it?
A:  It is likely the lightest piece of equipment we own.  Noah's little brother who is five can carry it around independently. 

Q:  How comfortable is the material for children who have sensory challenges?
A:  The material feels a bit like plastic covered foam, the Splashy logo however is embossed in the lower back which provides for a slight raised texture.  That may be problematic for some children, but could be easily rectified by placing a small wash cloth behind the child's back.   The harnesses are a soft padded plastic and when wet, does not seem to cause any skin irritation.
Q:  How easy is it to clean?
A:  It's very easy to clean and I clean ours with mild, plant-based, non-toxic cleaners.

Q:  How sturdy is it for children with high tone?
A:  Noah has extremely high tone and the device is very stable, it does not tip to either side nor does and recline settings in the back are very strong.

Q:  Can you use the Splashy as a floor sitter like the GoToSeat?
A:  Yes, technically you could use the Splashy as an activity floor sitter, however the Splashy cannot be strapped into a chair and would have to remain on the floor base to be functional.

Q:  How easily does it fit into a suitcase?
A:  It fits into a standard sized suitcase, slightly bigger than carry-on size, so you would have to check it at the gate if you were traveling by airplane.

Conclusions & Ratings:

I would give the Splashy a 4 out of 5 stars.  I do wish it had a tad bit more recline ability and a slightly wider head rest area. And the suction cups aren't dependable in the bottom of our textured tub, but the product does not lift due to the weight of the child.   I also continue to wish for a storage/travel bag for the product.  However, the Splashy is absolutely a worthwhile purchase.  There is no other bath seat on the market that can go from ages 1 to 8, which is a huge cost savings for families throughout the years.  It offers so many family participation opportunities from the family backyard wading pool, to sibling fun in the tub, to a day out at the water park, and you can travel anywhere with it easily.  It's not just a bath seat that is confined to your family's bath tub.
It's sturdy, lightweight, fun and easy to clean.  It allows for more options for bath tub play and allowing children to work on occupational therapy goals and tasks in the water because of the 26 different recline options, which gives both the child and parent the flexibility to be at various positions depending upon need and activity during bathing.

It is my shared hope that Firefly will continue to expand it's line to include older children, as I've adored Firefly's products for years and of course worry about what I'll do without them as Noah grows older.  Their products have made his life so much easier and full of joy and I want to be able to carry those same beautiful opportunities into his early teen years.  For now, I remain so grateful that Noah is smaller in size and continue to benefit from the Firefly line for a few more years to come.
I would hands down recommend this bath seat to any parent who had a child with special needs.  It's universal design makes this a viable option for almost all children with special needs.  It's price point is extremely reasonable, and the potential uses make it a versatile product.

If you haven't purchased your Splashy yet, here's the link to head over and check it out!

Happy Splashes!


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

Friday, February 17, 2017

When the Fight Song Comes To An End

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If you've been reading about Noah for years you'll likely know that I've fought some really hard battles over the years for Noah.  Some that would leave any other person incapable of standing and moving forward.  I kid you not.  My resilience for the struggles, hardships and injustices are something even I am in awe that I've been capable of getting through - and even with the perseverance and spirit in which I do it. 

But there comes a time, I think when you have to really reflect on the success of the fight, and even more so what the fight has cost you.  I suppose I thought at some point I could turn pain into purpose.  That was always my goal.  I didn't want others to suffer in the ways that I have had to, navigate the hardships in which I've had to - to heal and fix a broken system that leaves children with disabilities lacking in all the things they need to better their quality of life - all of it.  I had this illusion in a way that I could be everyone's hero - including Noah's.   I'd be able to reach my hands in and help - make a positive difference and inspire change.  

The reality just isn't like that. 

Let's back up a little bit and I'll tell you how I've come to my new epiphany.

The beginning of this year, I've had three appeals stacked up for Medicaid and Medicaid Waiver denials thrown in Noah's direction.  I've fought a long while from start to finish.  From the time of initial funding request to conclusion of events often takes close to a year to obtain final resolution of a matter.   This isn't simple, even for me who has a strong legal background.  It is time consuming, it sucks all the energy out of you, and you know most generally your efforts will be futile anyway but you carry on because your motherly instinct says giving up because your child depends on you - isn't an option.   Trust me three hearings in less than ninety days time is just crazy.

The first appellate hearing centered around a request for technology called VocalID.  It would allow Noah not to have a pre-recorded digital synthesized robotic voice for his AAC device.  All devices like Noah's come with the standard little boy voice "Josh"  and all children using AAC devices that have "Josh" sound the same.  VocalID would have customized his own individual voice using his personal vocalizations combined with his brother's donated voice to give him the voice of what he would sound like if he were a verbally speaking child.  Noah had doctor's recommendations and therapist recommendations for the technology all very strongly written that outlined his safety and need for having this feature on his device.  His Medicaid Waiver approved it, but because Noah has gone over $10,000 funding in a five year period, requests in certain categories (like assistive technology) must be reviewed and escalated to a State level.  As such the State disagreed with the Waiver's approval and a three person panel (made just for Noah's requests) ultimately entered a denial.  The software retails for $1,499.   I battled it out - the State asked for extensions of court hearings, claimed they couldn't get their evidence packet in on time - stretched it out for nearly a year.   I was hopeful an Administrative Law Judge would be able to see through these games that the State keeps playing with me.  Convinced myself I'd prevail because I always do - because there is no other option not to.  I cannot fail my son.

However, the Judge in this case decided that he wasn't going to essentially play "middle man" or second guess if the State department's denial was in error.  The Court's position was that it is the State's power of judgment and discretion whether or not to grant an exception to approving something if a child has exceeded a $10,000 cap during a five year funding period.   "The ALJ concludes that the "shall" language concerning the $10,000 limit is controlling for this review.  Because the Appellant (Noah) has exceeded this limit, the VocaliD is not approved.  Whether the limit "may" be exceeded is an independent decision of the Operating Agency that the ALJ will not second-guess under the circumstances of this case."   The decision to deny the request for the VocaliD is therefore upheld.

So, we now have a Court that says they won't intervene in deciding if a denial was entered in error regardless of meeting the burden of proof to specify otherwise.  If any Judge takes the position that they'll defer to the State's judgment rather than their own - then it makes the process that isn't on a fair playing field for children and families.  The Court is now stating it will stand behind Medicaid's decisions, regardless.

I had another appellate hearing January 30th.  I worked in the legal system for over a decade of my life before Noah's birth.  I'm great at deciphering the tone of hearings, and knowing immediately if there is a favored side or position in a case.  The same was true even with Noah's medical malpractice case.  It was evident that the Judge in that matter favored the Defense, even so much as not finding it a conflict of interest to allow a prospective juror to remain on the jury panel in Noah's case, even though his wife delivered the doctor's baby in which we were suing.   There are lots of reasons that Judges play favoritism, sometimes Judges would even personally discuss that favoritism with me behind closed doors - perhaps they went to law school with someone and maintained a friendship, perhaps their children played together, or sometimes it wasn't really all that subjective like they didn't like what a defendant was wearing or how someone presented themselves. 

The last appellate hearing, the State called in their top expert witness to go against me - the senior director EQ Health - which is a third party agency that Medicaid contracts with to make determinations on eligibility and requests.  She certainly had moments when the Judge should have checked her back in line and he didn't, yet he was quick to correct me on small courtroom formalities. It's also curious that the same Judge has been assigned to the last four of Noah's cases.  Something that usually doesn't happen docket wise unless someone intentionally assigns it that way.  Conspiracy theory?  Maybe - maybe not.  In any case the odds have turned and they are not in my favor, I know it, I recognize it and I feel it.

I don't expect favorable outcomes from the next two hearings either.

Which brings me to reaching the end of my fight song.  I've been a special needs parent advocate for others in the community for years, have pursued legislation, attended board meetings, even gone on local television all in the hopes of shedding light on some very bad things that are happening.  It's come at a great price to Noah.  When you step out of the box there are consequences and these come in the form of retaliation and retribution.  It is real.  I promise you that it is.  I am living proof of it.  The State has labeled me as a "problem parent" and as such has done their best to send me a message.

I was scheduled to offer testimony as to why the Medicaid Waiver rates were unsatisfactory for families March 17th.  I've devoted so much of my precious time and energy into things in which I thought I could change.  But I need you to hear me when I tell you this:  You cannot change it - not by yourself and usually not with the help of others.  It is a powerful system and one that will never care to listen.  Your testimony - your advocacy at these matters aren't to take your words into consideration or your story to heart - it's simply to identify you.  To have you out yourself as a potential "problem parent."  They want to know who to keep an eye on.  And I would strongly encourage you to think twice, three times, four times - one-hundred times before putting yourself out there all for nothing.  Don't be baited.  Don't be like me.  Don't let it make things even harder on you and your child with special needs.

So, I've decided after I see my way clear of the last scheduled appeals hearing March 21st, I will not be filing anymore.  I've also decided that I will simply be using minimal benefits for Noah under his CES Waiver, and will not put in additional requests for medical items and equipment that he needs.  In the end it simply results in a denial and I'm going to save myself the headache.  This means the State will get to chow down on likely close to nearly $20,000 (if not more) of unused funds yearly of Noah's Medicaid Waiver Cap.  Funding they don't even have to legally account for what they do with if it doesn't go to him.   His EPSDT Medicaid a completely different ball-game but yet not exempt from denials either.   The hearing January 30th was an EPSDT Medicaid denial for a Mygo Leckey Tour base, the State thinks I should ask for a hoyer lift instead and because I am Noah's licensed Certified Nursing Assistant that my job is to lift him - even if that means lifting him through Target or the grocery store without a wheelchair - as court testimony provided it's optional if I chose to take Noah out in public all Medicaid cares about is meeting his needs at home.  Not to mention that Noah's DME, NuMotion, did a tremendously dirty deed and corresponded with the State behind my back and provided a copies and pictures of everything they thought they had provided to Noah since birth to demonstrate to the Court that they feel all of Noah's needs are being met and he needs nothing additional at his age (as equipment he had received at age 2 should still fit).  Beginning to realize who's team everyone is on.  Something I only found out about because there was an oops in court exhibits and a personal email was accidentally disclosed to me.

There just comes a point in time you have to realize that you're spinning your wheels and going no where.  I'm not being successful in helping Noah despite my hardest and strongest efforts - the end result is generally the same - whether I win before the ALJ and the State reverses the Judge, or whether the Judge says he's going to defer to the State for their judgment if they felt the denial was appropriate.  Either way I'm losing.  It's just how is that loss defined on paper. 

And it's evident the denials are not going to stop.  I appealed a $100 Wedge Pillow they denied.  A $100 Wedge pillow when Noah is allotted close to $40,000 yearly out of a Medicaid Waiver Cap.  Ironically because they think I should pick out a medical grade one that will cost them close to a $1,000 instead that also does not have the features Noah needs.  I present them with the least costly option and they still snub their noses at me.  I ask them for a product called Carpet Saver to prevent Noah's drool, vomit and incontinent accidents from soaking through to the Carpet and they deny it citing it's carpet - even though it's not carpet.  It's a foam fabric layer you put over any flooring surface to prevent moisture from soaking through - that retails for about $500 for what Noah needs.  Not a break the bank request.

I'm going to find peace with all this, and find more constructive ways to help Noah.  God I don't even know what that is going to look like - but, I know where the help isn't, and barking up that tree is futile.  So, I'm throwing in the towel.  I'm done.  The Fight Song has quit playing.  May the State and Noah's CCB Medicaid Waiver throw a party and celebrate.


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

Friday, February 3, 2017

What Would Maya Do?

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Special needs parent and advocacy is built in many layers over the course of several years.  When Noah was first born I was just clueless.  Utterly clueless on how to navigate anything special needs related.  I was just trying to survive the moment, and perhaps I continued to do just that in Noah's early years. In the beginning you're desperately trying to balance hope, faith and acceptance.  Learning the abbreviations for all the things that will become a daily routine for you is really secondary to what happens to a parent.  Now terms, like CP, OT, PT, SLP, DO, MD, DME, and ATP feel like a familiar language and if you know all of them then you're likely on the same team I am.  But it took me a long while to get my footing, to learn the in's and out's of SSI, Medicaid, Waivers, assistance programs, grants, foundations all of it.  You don't just melt into it. The process is time consuming and overwhelming at times.  Years later it still is, because you are continually learning something new all the time - and the rules will inevitably change on you when you least expect it.

It is always a humbling and honoring experience when another special needs parent looks to me for advice and support and finds importance, value and even comfort in my words with my shared experiences with Noah.  I wished in the beginning that I would have had someone's footsteps to follow in - and I didn't.  Social media was in it's early stages of existence, and bloggers like me were once upon a time rare.  I've never had someone to really turn to on this journey to say gosh what the hell would you do if you were in my shoes because I'm just at my wits end with what to do.   It's a bit like walking in the dark all by myself and then telling others guess what?  I found a way out.

I don't always have all the answers, I wish I did.  I can be walking in the dark a long time before I find my way. And lately it feels like I've been in the dark a lot.  And I have a lot of lose-end fires that seem to be burning for Noah.

I'm stressed, overwhelmed, tired, a tad directionless with what to do next, I'm disappointed in others, I know I'm alone and I'm saddened, and yet I remain hopeful and full of faith that the doors I need to open - hope that the doors of help aren't padlocked with no key.

And then I sat here thinking with all that I'm currently facing in order to help Noah, and that I'm dealing with to give him the best qualify of life I can, the challenges that come along with that - and the circumstances beyond my control that go along with special needs parenting and the continual road blocks I'm up against - what would Maya from Speechless do? 

Although Maya is a simply a sitcom character - the story line is centered around the creator Scott Silveri's life growing up with a brother who had special needs.  It's quite evident that the story line is real.  I feel it weekly almost as if our lives are being shadowed or copied.  Or marriage dynamic, our sibling dynamic, the struggles - our humor to lighten up all the hard parts, and yet our seriousness about the situation still shines through.  To outsiders it's just a one-half hour comedy - for those living with a family dynamic centered around a child with special needs - it's so much more.
It's a validation on screen that we're not crazy.  That the system hasn't driven us mad while we're trying desperately to get approvals for wheelchairs and adaptive equipment, that the struggle is real with quirky and crazy therapists, that everyday hold a new challenge for us - and they certainly won't run out of material any time soon - Speechless will have a multitude of story lines to touch upon with the journey we have with our children.  It gives us a sense of relief because we can say yes, without a doubt Speechless continues to hit it out of the ball park every week.  Even re-runs are extra special because they serve as reminders that yep you're having one of these days again - but some our days and challenges repeat themselves no matter how much they wish they didn't.

I'm not even going to try to glam it up - the reality of the last month has really knocked me to the ground.  It really would the strongest of any special needs parent.  The habitual fight to help your child, the appeals hearings, the therapists who just don't get it, the realization of those who you thought perhaps cared about your child more than they did show true colors, the constant begging - and do mean I have begged for help from others to do their jobs and help me meet Noah's needs, the endless research for avenues to pursue for help, foundations, what to do if I can't get approvals for things Noah needs.  The whole leaving no stone unturned idea is exhausting.  And yet I look at him so precious, so perfectly precious and know that I cannot quit.  Even though my soul is so tired, even though I am fighting with all that I have -

So what would Maya do?  Would she curl up in a little ball and admit defeat?  Nope.
Would she pretend that no one failed her child and turn the other cheek?  Nope.

Maya would get up, she'd brush her teeth in a bathroom with no door because when you have a child with special needs you can't fix anything when you house is falling apart.  She'd take care of everyone else before herself, and then she'd kick butt the entire day and take names.  Settling is not on the table.  Raising the white flag - not an option.  Finding and demanding better because she knows her child is worth it and so do I - absolutely.

Noah is worthy.  He's so worthy of and deserving of an amazing professional team.  And if people can't deliver that then they don't deserve me to grieve their absence in his life.  He's worthy of Medicaid recognizing he is deserving to have his basic needs met both in and out of the home.  He is deserving of sensitive, understanding and competent caseworkers that understand the drive and need behind his requests.  He is an incredible little boy.  He really is.  And I'm not just saying that because he's mine.  To know him is to experience the purest love imaginable.

So in true Maya style, she'd say oh bloody hell with all of it.  And keep moving forward.  I will too.


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

Friday, January 20, 2017

Strength of The Banyan Tree

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In 1999, I had decided to gift myself with a college graduation gift.  Something that I worked all through college to save up for while working full time and attending college as a full-time student.  I had never been away from home, never been on an airplane, never ever broke away from my own personal comfort zone of what was familiar, easy and safe.  I booked a flight to Maui - for reasons to this day I can't even tell you.  Maui wasn't a life-long dream.  I wasn't running from or trying to escape anything.  It was almost as if I blindly pointed out a destination on a map and chose it.  An eight-hour flight later, with palms so sweaty that I thought I was going to literally fall out of the sky to an early death, I landed and was greeted by a lei of welcoming flowers, bright sunshine and a soft breeze. 

There were things I pushed and dared myself to do - like drive the road to Hana.  Which is an insane road, even for an experienced mountain driver like myself, but it took me to some of the most breath-taking destinations.  Black sand beaches, water that swelled red with shrimp, beautiful and peaceful cemeteries that I walked through, high cliffs and the ocean that I had never ever seen before.  The bluest of the blue that just went on for what looked like eternity.  I learned to love the stripped down version of myself there.  I went without make up, my naturally curly hair completely untamed, wild and free from products and hair accessories, my dress attire simple Hawaiian sundresses.  I had my first Mai Tai drink and went to a traditional Hawaiian Luau.  I did all the tourist kinds of things like a dinner boat ride, submarine exploration, and found myself emerged in a freak wave from the ocean while attempting to build a sandcastle in the sand like a small child.  I lost a flip flop, and the beach chair from the hotel that all went out to sea, and learned sometimes when your back is turned that you can get hit by the biggest wave when you least expect it.  

Yet, with all the things I did, it was that banyan tree in Lahania, Maui that perhaps gave me the biggest lesson of all.  It's this incredibly massive tree with branches that are just endless.  The tree's canopy spans a quarter-mile, but it's base perhaps the most intriguing.  Buddhists refer to it as the "tree of enlightenment.'  The banyan tree is majestic and strong and represents personal growth and wisdom.  Through life's experiences your roots get driven down deeper, and you become even stronger - stronger than you ever thought you could be when you were simply starting out as that small tiny seed. When I touched it, it was like the tree was schooling me.  I sat there in awe of it's enormity.  Yet, in hindsight I hadn't a clue what it was trying to tell me at the time - I just was allowing it to record it's message into my soul, so that I'd be able to replay what I needed at a later time.   
I couldn't have imagined or predicted at that time where my life would lead me.  I certainly wasn't given any warning or preview into the future, but the tree did tell me I'd have to be strong.  Oh, so strong.  That much I understood about that experience.  Perhaps for the average college graduate it would have been just a vacation, but for me it was building upon the foundation and strong roots that already existed within.  I came back both different and the appearingly the same.  But I've never left everything I felt or those lessons behind.  


There are countless times once you become a special needs parents that you have to exercise being unpopular.  Times when you have to have the bravery, courage and strength to be your child's advocate and champion in all things.  You cannot take the path of least resistance - even when you may want to.  Finding your footing the equivalent to realizing how deep your roots are planted and just how strong your branches are.   You can't look back on anything with regret, because the focus is always and forever the best interests of your child.  
It is often very difficult to find quality therapists - especially the older your child grows.  It's almost as if therapists prefer to wash their hands of children once they get to a certain age in childhood and express to parents that their child has no more potential to progress.  In reality the their jobs indeed do get harder, just as our jobs as parents get harder as they grow.  There is more lifting required, sometimes limbs stiffen more, children's over all tolerance may vary, and it's not as easy as it is to work with a three or four year old little cutie.  What I call therapist abandonment happens frequently and for a variety of reasons.  

I had such an abandonment today in fact.  In the course of four years Noah has gone through six speech therapists.  It's a type of therapy that simply doesn't have therapists that have a longevity of their profession.  Many leave and move onto jobs in public schools, or resume furthering their education, leave to become instructors, some have complete career changes - turn over for speech therapists is uniquely high - higher than both physical therapists and occupational therapists combined.   Finding a therapist - a good therapist that is skilled and proficient in AAC communication is very hard.  Most therapists may briefly touch on those things, but unless your child has a mild speech impediment, or needs to learn sign language your options for AAC therapists are super small.   Three years ago, Noah's then speech center no longer had an in-home therapist willing to drive to our area and we were transferred to a "sister company."  

It was evident that the our first therapist with the new agency was new both to her job and profession and lacked that employment spark and interest and made it known that the job was a stepping stone and resume builder for her attempts to further her education.  Half-way into our year with her she told me that Noah wasn't making significant progress and that it wasn't worth the investment of her time and asked me to invite the owner of the company to come along to one of Noah's sessions so she could show that Noah was making no progress.  I should have kicked her to the curb then for having little faith in my child and should have had the backbone then to speak up and tell her that it was indeed her shortcomings of knowing how to work with children an AAC devices, yet I consented to the meeting which years later turns out wasn't even the owner of the agency - in fact to this day I have no idea who her companion was that she was demonstrating that Noah had no capabilities in AAC communication to, even though he had and was using a device for some time. She eventually decided to pursue a master's degree in Georgia and I was relieved that I didn't really have to address her lack of confidence in Noah and his capabilities.  

You always hope you will get an upgrade when any therapist moves on to something else.  But my hopes were quickly dashed when her replacement worked at a local college as a speech pathologist instructor and made it known that she had little time for Noah.  In fact, I was lucky to see her once monthly, even though I know she continued to bill Medicaid for weekly visits and was thereby committing fraud.  She hated Luke, and demanded that I have him leave the home while Noah did therapy - something that was impossible.  Luke never caused any trouble but she did not appreciate his presence nor his interest as a sibling.  I got in the habit of asking my mother to come over to play with Luke in his bedroom to pacify her dislike for Noah's little brother and her unwillingness to allow him to simply watch his brother's therapy session.  I spent eight months asking her to do an evaluation and trial for a new speech device for Noah only to be met with continual excuses and resistance for ignoring my continual requests.  The final straw was when she called to tell me she had acquired PTSD because her neighbor's house had been broken into and she couldn't see Noah for two more weeks until she recovered from the stress.  I expressed my concerns to the company and at that time was met with understanding.  

A temporary therapist came into the home to conduct the evaluation for Noah, complete paperwork and submit referrals.  He was a rather impressive therapist and rare.  His eye to detail and willingness and techniques to draw out the very best in Noah was indeed inspiring.  Yet, sadly a therapist that didn't do home visits and we didn't have the ability to make the drive to him weekly.  He was patient, kind and understanding and even willing to come to the home multiple times to get the evaluation completed even when Noah fell critically ill last April and was out of commission with all therapies for three weeks.   He worked timely, his correspondence and communication with me was excellent and it was what any parent could have hoped for.   

We were put on a wait list of sorts for Noah's newly assigned therapist to complete school and move to Colorado.  I was cautiously optimistic.  I know that freshly graduated speech therapists can be either a blessing or a curse.  Sometimes they're so motivated to learn they succeed and even do dances around their well-seasoned co-workers, and sometimes they fall flat on going the distance and really learning their craft well.   I started to experience frustrations with the lack of ability to program and learn Noah's new device.  Which was causing me to download all of Noah's needs, learn the system on my own, and expect very little troubleshooting help or assistance from Noah's speech therapist.  Of course there were other little difficulties too, like the therapist repeatedly holding Noah's eye lids open when he felt that Noah was being lazy or tired or tickling him.  Something that you absolutely do not want to do to a child like Noah who has a severe sensory processing disorder. 

The agency's response of Noah's therapists lack of programming skills and knowledge continued to be reaching out to the manufacturer of the device instead for tips.  Noah's had his new device since July of 2016, yet still doesn't have any functioning mount for his wheelchair.  The agency attempted to make him one out of spare parts that turned out to be neither safe or secure for Noah or his device.  It could easily tip over and hit the ground if you so much breathed on it.  I asked the agency to help me troubleshoot with finding a workable mount - knowing that I would have to fully fund it out of pocket because of Medicaid's low reimbursement rate - but there were no suggestions or options presented.  So I'd spend nights after Noah went to bed into the early hours of the morning researching mounting options on the Internet looking at pictures and specifications to find viable options because I couldn't light Noah's speech therapist or agency to assist me.  I asked for a trial of a couple products that I felt might be a good mounting match, only for the agency to deflect responsibility onto Noah's DME who has no experience or contract with mounting agencies.  After two weeks time I hadn't heard back from anyone, so I coordinated trials on my own within 2 hours time.   

There is nothing worse than feeling like you're doing a therapists job and not getting paid for it.  I'll have to pay shipping costs both ways on both devices, submit a credit card to secure a deposit of sorts - and fill out applications on my own.  And I am sure the therapy center simply didn't want to incur the costs of trials for a client thereby trying to push responsibilities back onto Noah's DME instead. 

Yesterday, I outlined all these difficulties with the hopes that the agency would step up and say yeah we've kind of failed a bit and dropped the ball and we're willing to see what we can do better or how to make this better for you and Noah.  Yet, today the response email was we're dumping you as a client, here is a list of companies you can check out instead, and by the way we want our parts back that we lent you for Noah's "Frankenstein" mount.  I'm disappointed of course that was the response and the feelings of the agency, and I know that there are lots of other parents experiencing similar difficulties with the same agency because we all talk to each other - so these difficulties are not isolated to just Noah.  I would have hoped that they took my concerns seriously and didn't take a dismissive tone or attitude towards it all.  

Parents like me tend to stay in bad situations because we feel like we don't have a lot of options.  There are not many speech therapists experienced in AAC devices - and as such we're often willing to assume a bad therapist over no therapist.  But we're doing such disservice to our children when we do that - and to ourselves.  I deserve to have the kind of genuine help that I need, my child needs support and deserves to not be without a speech mount for now going on seven months because I can't light anyone's fire to care enough to get it right.  I don't deserve to have to ask for the company to come out and train me because the speech therapists are unwilling to learn the device well enough to know what they're doing. 

So, Noah is Speechless - (yes, find the humor in it) because we all need a little laugh to get through the hard parts.  But I'm going to pick up the pieces and find something better. I know I will - because I have faith that someone will go the distance for Noah.  Someone will be his champion, someone will care enough to be beyond awesome.  And so I wait for that next door to open.  But while I do, I take solace in the strong roots that continue to drive down even deeper.    

"From little seeds grow mighty trees."


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