Friday, July 24, 2015

Stair Lift Stumbles

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Noah's stair lift was installed Monday morning.  Something that I had fought rather hard for, and something I believed would help me safely get him down the stairs to his adapted bathroom instantly became a bigger headache than I ever imagined.   I was worried watching the track being installed, but kept telling myself I need to reserve final judgment until it was completely in.   I was told it was going to come out a "just a little bit" from the wall - but not the distance that is actually wound up being.  And that the seat could be removed completely for bringing Noah's equipment up and down the stairs, as some of it weighs nearly 100lbs, like standers and adapted seating devices.  Some of which takes up the entire width of the staircase to bring it up, and multiple people assisting depending on what it is that is coming up and down the stairs.  Equipment much to cumbersome to have in our living space upstairs all day, as there is no place to store it, so we bring it up daily or every few days as needed and then take it back downstairs.  We have an unfinished basement with an uneven and cracking concrete floor with presence of efflorescence, all of which could be fixed with lots of money to finish the basement and correct the floor -  but Noah's walkers and such aren't practically used in that space because it's really a rough area to work with as it stands unfinished and I can't put in him a stander in the unfinished basement for two hours while his little brother roams free on the first floor.   Noah would never be happy with that proposition.   So it's essential that we have the ability to bring his equipment up and down the stairs.  Something that just became impossible literally overnight with the stair lift.   Half of his equipment is now stranded in the basement, with no real logical or good way to get it up and down the stairs safely or adequately. 

As it turns out the actual distance the track is from the wall is 9 inches!  That's huge on a very small stair case.  Add a motor and stair lift seat on that and it becomes 20 inches away from the wall.   The track is 16 inches high!  Meaning you'd have to be able to lift over a foot above the track to get anything up the stairs if you were even able to get past the chair itself.  When we were sold this stair lift we were told the chair would be removable - no problem they said.  Not true, they took all construction manuals with them, and said that if we want them to remove the seat (for instance to bring things up from the basement) that each time they come out to do that it would be a $150 fee.  If we needed the track removed a good $800-$1,000 each time to have it uninstalled and reinstalled.  Something that was never conveyed to us when agreed on the project.  We were led to believe that this would take up minimal space on our stair case, that it would have a 5 point harness for Noah's safety and would fit him well, and that we'd have the option to remove the seat (which doesn't even cover the motor which is just as big and would need to come off too) easily.   It came with a Race Quip Harness that they put on the seat.  It was huge, and the metal lock that sits on the hips was so heavy that it could have easily done damage to Noah's hip bones just by the shear weight of it.  Not to mention it wasn't designed for a child of his age so there was no way to get it small enough to accommodate his body.

While they removed the harness realizing that there was no way the Racing Quip would work, they said they'd work on getting a harness made out of "back pack" material.  That won't work either.  Noah needs a pediatric harness, or butterfly harness and either a 3 point or 5 point depending upon the upper body support.  I showed them what he uses on his seating devices, and it was dismissed like we'll just make one out of fabric... It also has no lateral support, and Noah with his high tone could likely get his feet stuck in the vertical railing that is structural on the stair case going down before the curved edge.  His father rode it with Noah sitting on his lap, and Noah's feet stretched and scraped the wall going down in a sitting position because he extends his legs, and Noah's daddy isn't an average sized guy and he too found his knees an inch away from the wall.


The project manager for the stair lift seemed rather dismissive of my concerns; saying can't be refunded since it was a custom curved stair lift, that a back pack harness should work fine (whatever that really means), and said I could take Noah's equipment out of the walk-out basement before I had to tell him that we did not own a home with walk-out basement.  It's 100 percent underground, it's not even garden level and there is way to fit his equipment through a window well.   So my concerns didn't seem to trouble him, with the overall attitude of it's in now kind of deal with it.  

I am also a bit bummed that my carpet now has silver dust (likely from metal rubbing) on the staircase and that I stepped on a drill that they left in the hallway during installation that impaled my little toe which required just basic home medical care.  But I was relieved that it was me and not either child that obtained that injury.

I think my feelings could adequately be described as buyers remorse.  Insurance has already paid for half of the project, they don't pay the other half until completion and satisfaction of the homeowner.  Yet, I suspect that the contractor's idea of satisfaction is simply slap on a back pack harness and call it good.  Which is going to do nothing to address that it's simply too big of a track from the wall, and that the seat can't be positioned as we were promised to accommodate getting any of Noah's equipment to and from the basement, or even that Noah is going to require more postural support than a make shift "back pack material harness."  I'm not really sure what the end result of this all will be.


There are tracks and stair lifts that do exist that hug the baseboard and the wall, there are a variety of different kinds of lifts even something called a wheelchair platform lift that would of course solve all our problems as we could just wheel any piece of Noah's equipment - with him even on it and it would lift him up and down.   Problem being not all lifts are necessarily compatible with a split staircase with a landing like ours.   Some lifts are only designed for straight staircases.  But I do believe there are some products that would be much better than the one that was installed.

Ideally if we're going to be blocked off from the use of half our staircase then really what is needed is a wheelchair platform lift for rounded corners.  It would allow Noah to ride his own wheelchair up and down the stairs and allow us to put any piece of equipment that existed in the basement on it so we didn't have to struggle to lift it up and down the stairs.  Only problem being finding a vendor that does this type of thing isn't easy, and would insurance even consider it in light of what we're up against?   Each contractor works with their own manufacturer and vendor which makes it difficult to find the product you want.  We tried hard to get a pediatric Stannah lift, but much to our dismay we could not get it in the USA from the UK.  They don't see the pediatric seat as safe in the USA where they do in the UK.  Our safety standards differ, although having several pieces of equipment from the UK I can tell you they often give more consideration to the safety of their products than we ever begin to think about here.

For all of you out there contemplating stair lifts for your children, please learn from my mistake.  I'm certainly kicking myself that I was easily led to believe that this was not a going to be the monster that it is on our staircase and that it just blocked me from moving any of Noah's equipment around.  What is in the basement now is stuck there, what is upstairs is now stuck there too. 

The cost of an elevator lift isn't something insurance would consider as those range in the 40-60K category.  The cost of the stair lift was a few hundred over $13K.  We know that with Noah growing we have to do something, but at the same time we know that this isn't going to work for us.  At this time I'm assuming if the contractor is unwilling to work with us on finding us a better suited product for our home based on the project managers insistence that we're stuck with it - like it or not, in which case I guess that we ask to have it uninstalled and store it in the basement.  And then we just threw Noah's insurance funded home modification out the window.  I'm certainly a bit stressed out about it.  I know it's just a stair lift but my stomach is heavy with regret that I thought I was getting something that would work for him and it doesn't.  And I can't conceive that this particular Bruno lift has any potential no matter what is done to it to make it work in our home for Noah our for his therapeutic equipment needs.

The owner and the contractor are visiting Monday, I do worry that it will be a "smooth over & learn to love it" visit and not really how do we fix this visit.  And I'm certainly not getting the "we support you" vibe from his insurance caseworker either.  It's kind of let us know how it all pans out, but I'm not feeling like options or solutions to the problem are going to be presented.  I hope I'm pleasantly surprised.  I'm certainly trying to be optimistic. 

Love,



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

Sunday, July 19, 2015

The Dynamic Movement Orthoses

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Noah received his Dymanic Movement Orthoses (DMO) almost a month ago.   It looks really small - makes him look even smaller than he is when it's on.  A compression suit with specialized panels that are designed to give his body positive feedback and encouragement not to move in certain ways (like scissoring his legs) and strengthen weekend areas like his trunk and core.   It only took three weeks from the time of measurement to receive the suit from London.  We ordered the nude color, but now I'm kind of wishing I had ordered a color so he could just hang out in it in public without clothes over it, especially since Noah isn't able to regulate temperature, he could easily overheat in it during summer months.  And it makes him look naked with it on.  But knowing growth will require a new suit in 6 months to a year, it's something I can always change next time.

For the most part it was easier to get Noah into the suit than I anticipated.  Although it took me two days to stop having difficulties not zippering his skin in the inside leg seams.  Which I feel terrible about.  Noah, bless his heart was starting to grow fearful of this suit anticipating that I was going to be pinching the inside of his legs every time I put it on.   The first day a child wears it 1 hour, the second day 2 hours, the 3rd day 4 hours and then thereafter 8 hours daily - or until bedtime.    This is to measure pressure points and see if any marks disappear within 30 minutes.  Any marks that stay longer than 30 minutes indicate a pressure problem that needs to be resolved and fixed with the suit.  Thankfully Noah didn't have any significant marks that stayed for a long period of time.  His is skin is incredibly sensitive, but the suit seems to do well, although the 8 hour mark is his limit - typically for him 7 hours is about all his body and skin can handle.  And he doesn't appreciate it everyday, so I'd say we're up to about 4 times weekly.

He seems to have his normal range of movement while wearing it.  He can still roll on the floor as he normally would from room to room.  I see him crossing his legs much less with the panels build in and in fact am noticing on day two that his left leg (the one typically the one most likely to scissor) is remaining in a bent and upright position while laying supine.  That's a positive for sure.  Noah of course can't sit independently with or without the suit, but I can tell propped sitting (with holding one arm) that there is a significant difference in the amount of work it takes for me to hold him up and how he can center himself with the suit on as opposed to off. 


I'm also noticing potentially a difference in his sensory gag (a bit early to tell yet) but I think it may be improvement.  Self-calming seems to be a benefit, as he appears more relaxed in it.  It could take a couple months for me to really know how big of an impact it is having on his sensory challenges.  As they come and go frequently and different things set them off - mainly people he feels are invading his personal space, or those he feels will approach him for harm or to touch him.   But he does have secondary sensory challenges like touch, and sounds - even dogs barking can set him off.   And he hates the sensation of plastic or laying on plastic.  Plastic medical chuxs will make him throw up within seconds.  And he cannot handle the smells of his own bodily fluids and bowel movements. And sometimes just when I think I've learned all the triggers Noah comes up with something new that upsets him.  He likes to keep me on my toes like that.   It's not easy, but I am so patient with him, as I can only imagine how hard things are for him.

Overall I'm pleased with the suit.  And think it's made very nicely and has a huge potential for Noah and children needing postural support.  It's an expensive little gadget, and thankfully it went through Medicaid easily as it is billed under an Orthotic code, which are typically not denied.  I'm thankful for the small miracles that come my way with the mounting battles that I have to deal with when it comes to Noah's Medicaid benefits.  However, I know of a family in the UK that was recently denied their DMO suit, so it's not easy everywhere.  I wish it was.  There shouldn't be a child anywhere that gets denied their medical, equipment and therapy needs.  There is just never enough help for all that is involved with parenting a severely disabled child.  The costs when I think about them make me sick to my stomach, and make tears well in my eyes because I worry about how I'm going to figure out a way to help Noah with all that he needs with what little we have all the time. 

Originally I had thought maybe this was a suit that could be passed onto another child when he outgrows it,  but that isn't the case with DMO suits, they are so specialized and have so many specific measurements that you'd have to be Noah's twin likely for that to work.  I'm hopeful that this will offer Noah more support in his daily activities.  At least he doesn't object to it, so that's a huge step.

If you want to know where your heart is, look where your mind goes when it wanders.
 



Love,



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

Friday, July 17, 2015

Toss Out What You Thought You Knew

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Today I met with the State and an Advocate from Family Voices to discuss concerns and discrepancies within the CES Medicaid Waiver program.  I kind of feel like everything we've all been told and led to believe is all wrong.  Which certainly is an explanation for why many parents - most in fact are operating in the fashion that they are.  This is definitely a big misunderstanding of how the CES Medicaid Waiver works based on information relayed to families by CCB's.  There are still some grey areas - that I still think need clear clarification.  Just because in my mind I prefer to view all things with equality.   But, some of it is discretionary or subjective - like respite hours, that are dependent on such factors as parent CNA and the needs of home-based care.  Or why one child under one CCB is allowed services that a child in another CCB is denied with an identical diagnosis.

I think the thing blowing my mind the most is all of us are told that our child has a yearly cap.  For example it's supposed to be $37,310 for the year 2015, (although all billing statements from the CCB reflect last year's cap of $36,400) but in any event families receive spreadsheets with items that have been approved yearly and it's all deducted from this grand total cap, demonstrating how much you are left with to get your child to the end of the year.  All families believe this is their pot of money for their child and obviously get frustrated when they can't access or utilize all of these funds.  But come to find out while these yearly figures are caps - maximums that you cannot exceed, it's all request based and that each child under the waiver umbrella is not entitled to that $37,310, the actual figure that the State really assigns to each child is more like around $8,000 from what I'm told.  So, while you can use more than $8,000 the max is $37,310, but you are really entitled to as much as they'll approve.  It doesn't at all belong to your child.

I still think there are some unrealistic options for families - the appeals process, and how it still can end with Medicaid's agency with the ability to overturn an Administrative Law Judge's decision and then a family's only recourse beyond filing an Exception to Initial Decision, is to file a case with District Court which would cost them in court costs and likely legal fees should they pursue legal representation, most families just can't handle that financially or time wise.  I think it discourages most families from that route whether it be with traditional Medicaid or through the CES Waiver.   Is there a way to fix it - likely not.   Just how the system works.  The only thing that would block that is to prevent the State from even being able to file an Exception to Initial Decision and I don't see that happening any time soon.

Medically necessary means nothing.  You'd hope that it would be it doesn't.  Medicaid is not bound to what any doctor's recommendation may or may not be.  Yet, yes we're still all very much obligated in getting documentation from doctors and therapists for any request, even though it doesn't entirely matter what a doctor says.  The State indicates that the CCB approved Noah's anti-suffocation pillows in error, and that therefore the pillowcases were therefore denied, and that request should be pursued under EPSDT (or what we all know as traditional Medicaid).  It wasn't, and it would be nearly impossible for submit a request under EPSDT because for many of these items that Noah needs there is no medical code to be submitted to Medicaid.  Without a code it's been my experience that Medicaid will flat out deny it.  I've been there with requests like that under Medicaid.  CES was supposed to assist with the costs associated with traditional Medicaid denials.  If it feels a bit like a an endless circle it is a bit like that.  I suppose at this time it's still leading up to a Medicaid appeal hearing, which I'll likely win, which Medicaid will likely reverse with it's filing of Exception to Initial Decision, and then I'll lack the funds to pursue legal action with District Court.  Or at least that is how I anticipate this all will play out with pillowcases based upon just briefly touching upon this issue - which was really mainly about how do families go about properly requesting items that are a medical necessity under CES with using my recent pillowcase difficulties as a prime example.

I'm not sure that there is a really easy way to get the state to address unusual requests  - or requests that they don't see all the time.  Partially, I think because parents are too afraid to ask for them, or that they automatically assume will get a giant no.  As sensory clothing really isn't that odd of a request. Although the State said they likely would have denied that too, even though the CCB approved it in Noah's case.  I have to come up with how much I'd spend on Noah's clothing otherwise, the State will then decide how much they'll bring to the table.  Not sure what that really means, but they'll make me prove with receipts how much I'm spending on Noah's clothing out of our own pockets in addition to whatever they decide is an amount they'll allot to Noah for sensory clothing yearly.  It's still a fuzzy area that will require some financial spreadsheet charting, correspondence and communication to sort out until there is a concrete answer on it.  There wasn't a firm resolution on it. 

And parents if you think you'll ask for something that benefits your child within the home (i.e. a UV light or air purifier)  it would be denied under both CES and EPSDT because they are not going to consider something that is throughout the house.   Is there a way to really know what items will face automatically rejection?  Well the chart in the manual is a good start, it kind of gives you an idea of what you can and cannot ask for under CES, which is why I think it would be great if all parents had access to it.

I think we made good use of our time, we touched on such topics ranging from but not limited to; homemaking services, FRE fees (which are really terrible that families are being assessed these fees out of items and services that are approved),  lack of consistency of utilizing benefits or equal access between CCB's, respite, end-of-year accounting, over and double billing, payment mechanisms for families like providing them with gift cards for funding items.  I tried to cover as much as I could that were concerns for our family and other families I have assisted in the community. 

Of course when you step up to be the leader to be a voice for others there is always that concern that you might unintentionally ruffle feathers even with your own CCB since you are kind of leap frogging to find answers at the top, that somehow this could have an adverse effect on Noah's future benefits and requests.  As it is very much a "mother may I?" System and Mother may just say no, as a penalty.  I would like to believe nothing like that would happen, but it is in the back of my mind.   Not that the meeting in any way was out of hand or led me to believe it was a mistake by approaching the State on behalf of Noah and for other families who share the same and similar concerns.   By all means it was as productive and informative as I had hoped it to be. 

I certainly came out of it with more than I expected in information but now feel like I have to toss out everything I had thought I knew about CES, and start over reading this 90 page manual that I received at the meeting.  Something, I think all parents should be handed from the start.   It's basically rules and guidelines that CCB's have to follow in making appropriate determinations regarding services.  It also has a frequently requested guideline table which I think looks very informative and helpful.   And in my spare time, I will dedicate and devote time to reading all of it, so that I can give out good and accurate information to others.  


I also hope that we can schedule a parent class with the State at some point in the future.  Dedicated to simply learning and absorbing benefit rules and guidelines.  A meeting that has nothing at all to do with bringing complaints or expressing grievances - but simply about just learning and growing familiar with what we can and cannot do under CES for our children.  There is power in knowledge, for all of us.  We first must properly have a firm grasp on CES rules before we could ever begin to aim changing any of them.

I still have big goals, with making changes to some of what I have learned.  The FRE fee I would like to see go away, which will require legislation and another branch of government.  And I still have hopes that I can get EPSDT to add new dietary supplements to its data base so that parents can utilize other forms of nutrition from Medicaid covered funding.   I'd also love to see legislation changing contracts with the State such as Enchanced Homemaking categories, increasing State rate pay so that quality companies and services would be more likely to engage with contracting with the State, that too would take some legislation.   It would also be great if funding sources were more clear, as some CCB's are fed by local foundations thereby influencing the availability of financial resources to pass along to families. 

I'm always trying to make things better, for Noah and for everyone else.  Sometimes I feel like if I don't get up and do it, no one is sure going to join my bandwagon.  Which is fine, I'm good at flying solo.  And in all honesty many parents would be overwhelmed by all this, not to mention it takes a tremendous amount of time and energy to invest in these types of things when you're care-giving 24/7.  I hope to re-group and when I have time to digest all this information in my mind and figure out how to sort it all out. 

Until then I think I've earned myself a hot cup of tea and 10 minutes watching my garden grow. 



Love, 




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

Thursday, July 16, 2015

Living Truths: The Supreme Court Decision

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Six and a half years I've fought for Noah.  He was not even quite three months old when we started legal proceedings to fight for justice for what happened to him at birth.   Certainly the longest and hardest, most emotional and trying fight of my life.   And I've only been able to write not even a breath of all that has happened and gone on - for many complicated reasons during the course of this time.  I hope someday I can find a proper way of telling the complete story.   My soul certainly aches to scream it from the rooftops.  I often feel so silenced.  

We received the end of the road decision from the Colorado Supreme Court yesterday. "Order Denying Petition for Certiorari."  For those of you not familiar with the legal system, this means that it's the end of the road in the pursuit of justice for Noah.  It was a long six months waiting for this decision after the Appellate Decision.  I kept hoping and praying the whole time.  I didn't give up, the odds were always against him throughout the appellate process.  I'm literally haunted by what happened to Noah and myself that December day.  I lived it.  I'm still living it.  I know the truth even though I wasn't able to convince a jury of the truth, even though I couldn't get a Court of Law to do the right thing by Noah.  Of course even a harder pill for me to swallow as I dedicated so many years of my life to a system I wanted so badly to believe in.  I wanted to believe there would be justice for Noah. I feel betrayed by my belief system, I feel betrayed by those I blindly trusted, I feel betrayed by people who said they cared but then turned their backs thinking it was nearly criminal that we pursued a medical malpractice case because our child suffered the fate of medical negligence.   And just because a jury came back with in favor of Defense does not make it truth.  It doesn't mean that what happened to Noah wasn't their fault.  It just means that they got by with it.  And we are just one of thousands that don't find justice through the Judicial System.  Society has a tendency to put the weight of a jury's decision as being the final word of truth.  And it isn't.  Juries are a unique make-up of people that Defense tries to find have the best chance of ruling against you.  Even still there is so much that is kept from most juries.  Battles behind the scenes out of the presence of the jury to make sure there are things they never get to see, it's all about playing this game in Court.  Pictures of fake baby on the internet for a jury to view as a depiction of what Noah looked like, but real pictures of Noah not allowed as evidence.   And witnesses can get on the stand and lie about even meeting me, and suggest that I was too drugged to remember the truth.  But oh how I remember, how I remember every whispered word spoken, the sounds, the lights, the smells.  It's something as much as I try to run from that is always there.  I try to stay so incredibly busy and productive so I can't dwell in this painful place. 

"A lie gets halfway around the world before the truth has a chance to get its pants on."

And all of this is incredibly hard, but acceptance comes in knowing that I wasn't the one who failed Noah.  I refused to give up fighting because when you know what is right you never give up.  And I didn't.  I can look Noah in his beautiful blue eyes and tell him I did everything in my power for to fight for justice for him.  None of it was easy, and the rest of our lives won't be easy either.  I know there are some that will flock to this post like vultures awaiting my response.  I'm sure many in fact that were players in Noah's case.   Some come to celebrate that their lies succeeded.   Some may even very well likely invite each out to lunch to discuss it and give each other high five's that Warden vs. Exempla is finally over.  Unfortunately I've been privy to watching those types of egotistical celebrations at someone else's expense behind the scenes before during my legal career.  I know the truth, and God knows the truth.  It doesn't matter what anyone else's opinions may or may not be.    You get to a point in your life when you really genuinely quit caring about what people think.  People love to cast stones about things they have absolutely no concrete knowledge of the truth. 

So how does one pick themselves up after something like this?  I'm not entirely sure I know the answers to that yet.  I just know that I have to keep moving forward, that I have two children that depend on me - Noah especially.  I just have to make a conscious effort to put one foot in front of the other and have to pray that God literally carries me the rest of the way.

 
A lie doesn't become truth, wrong doesn't become right and evil doesn't become good, just because it is accepted by a majority.
 

Love, 



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

Tuesday, July 14, 2015

The Blessing Called Chick-Fil-A

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There are tons of people that would stand in line and tell you just how terrible it is to give in to your child and allow them to eat out, snag restaurant food, and that you're doing this incredible dis-service to your child if you allow them to dictate their eating habits.  But when you have a child with special needs all that mumbo jumbo gets thrown out the door.  You do what you need to do when you need to do it.  And if you have a child that will boycot all other meals until he gets his favorite meal then you go fetch it and you fetch it fast and with zero mommy guilt. 

Noah is that child.  And his favorite meal happens to be Chick-Fil-A.  He prefers the same meal: A child's 2 count chicken strip kids meal, with fries, chocolate milk, a medium fruit cup and a gob of mayo and two packets of Chick-Fil-A sauce.   We bring it home and blend it all together in the Vitamix.  His idea of the best meal on earth.  If he isn't feeling well and doesn't want to eat - Chick-Fil-A will do the trick each and every time.  It's sometimes financially hard to keep up on Noah's desire to visit Chick-Fil-A on such a regular basis, but I'm thankful that Chick-Fil-A exists, even if that means our bank account is taking a tad bit of a hit for his idea of fine dinning.

Noah has even memorized the route to get there, and squeals with delight the closer we get.  He also isn't a fan of long lines and waits in the drive-thru so I'm always grateful when the line moves fast.  Luke also knows that Noah does not like anyone playing with his food until we get home.  So Luke likes to remind everyone not to play with the food until we get home.  There is no snacking no drinking on the way home.  We don't eat until Noah gets to eat - which is only fair.  If I was in Noah's shoes I would be tremendously frustrated if someone was eating and drinking in front of me and I couldn't do it without help.  Luke is always looking out for his big brother.

Noah can finish every single bite of his Chick-Fil-A meal, and he never grows bored of it.  Some weeks it kind of feels like I live at Chick-Fil-A.   And Luke loves to decipher Noah's needs and doesn't even hesitate to tell me that Noah want's Chick-Fil-A.   In fact, Noah himself has grown increasingly good at communicating on his Tobii Eye-Gaze device simply because he's motivated to build sentences that tell me and his speech therapist that he wants to go to Chick-Fil-A.  So you can pretty much guess what we get to go do on speech therapy days. 

We all have our favorite things in this world and for Noah Chick-Fil-A is just his. 


Love,



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

Sunday, July 5, 2015

Fireworks Do I Like You?

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I use to dread the 4th of July.  Dread seems even kind of like an understatement.  It was one of the biggest sensory nightmares in Noah's life.  I remember thinking my neighbors were evil because not only were they setting off illegal fireworks feet away from my home, but they were sending Noah into screaming hysterics... the entire night long.  And nothing helped him.   For years we did our best to avoid any type of public fireworks display.  Then a short time ago we moved into a more handicapped friendly home.  Little did we know we moved on top of fireworks lane.  Only a 10 minute walk at best from the city's firework display.  Ironically, however just like a magic wand Noah tolerated it.  And not just tolerated it, but enjoyed it with delight.  We're over our sensory challenges with fireworks I thought.  Finally.  Thank God, I thought to myself because we couldn't just pick up and moved after we realized that new our home was prime real estate if you were a lover of fireworks.   Year two, thinking last year went well - Noah was past all challenges and he'd love it again.  But not so much. 

While he screamed only once, he whined and protested the entire time.  Maybe he was overly tired, maybe he was bored, maybe he remembered that he hates fireworks.  I don't know.  But this year wasn't as great for him as last year was.  I'm kind of bummed.  Two steps forward and ten back.  Sensory challenges are so tricky.  Just when you think you've made progress you realize you haven't.  Noah met some new friends on our walk to the park and back before fireworks.  And still his sensory gag was hard at work.  The sight of new people or people anywhere near his home, his personal space, near his wheelchair or even those walking in front of him make him gag and throw up.  Yet, we can take Noah out to some very public places; restaurants, the zoo and even travel anywhere with him and you may never see his trademark sensory gag reflex not even once!  He's just his own person and we've just grown to accept that Noah just has likes and dislikes and things hat make him equally comfortable and uncomfortable.  Sadly he isn't able to use words so his only cue to tell us something bugs him is to use his sensory gag/vomit reflex.

At least Noah's day was great up until fireworks.  We played a bit outside.  Noah loves to sit outside providing we can find shade for him from the sun.  I'm still trying to work out a swing that is much too small for him and I know he misses it.  I still hang it up from time to time, but squeezing him into it and knowing he's too tall for it now and I have to watch his head more - really makes it a bit discouraging for me.  Here we are in the heart of summer months and there isn't the extra funds to play with to buy him a new one.  It's not like going to ToysRUs for a $30 swing - he needs one that is more like $300.  These special needs price tags are certainly a huge bummer.  I still have to laugh at his county services telling me there are "typical" costs associated with raising a severely disabled child.  They have no idea.  There are no such things as normal costs.  Nothing about Noah is typical.  He can't sit, he can't walk, he can't talk, he can't self-feed or eat solid foods.  All of that requires a lot of intervention, equipment, therapy and assistance.... and all of those elements needed for his daily living needs are hundreds if not thousands of dollars.

We did make it to Target because Noah was protesting laying on the floor, and I was surprised to find some new Minion toys that were suitable for Noah's physical abilities.  Usually I am searching isles up and down several times and leave empty handed whenever I am hunting something for Noah to play with - because most things are not geared towards children with  gross and fine motor challenges.  But there it was, a minion touch flat piano and a minion button a tad smaller than his adapted BigMack Switch.  I couldn't leave them in the store.  We are counting our pennies like crazy.  But I splurged and spent $15 on both.  He hasn't been gifted with anything he could play with since Christmas - unless you count his jumbo coloring books that he shreds like crazy from the dollar store.  It made his entire day (and I hope made up for the fact that he disliked the day's end finale of fireworks).  It was really fun to watch him play - his way with something he could do.  And when he is happy that high pitched squeal when something reaches his funny bone, is the coolest sound one could imagine.


Luke had a great time - he is always making sure Noah is taken care of.  He made sure that Noah was wearing his 4th of July shirt, and that he had a glow stick just like he did.  He is so incredibly thoughtful and Noah is of great importance to him.  If I'm busy Luke will even go grab a switch toy out of Noah's closet and hold it up so Noah can activate the button while he holds Mr. Tumble up for Noah to see him.   I pretend not to notice, but I do.  Luke enjoys playing with Noah in their own way they are this sweet little team.  Best buds. 

We finished off the weekend with a trip to the Zoo (which is still Noah's favorite place after all these years).   It was great because not a lot of people were there today, and it made it more enjoyable for Noah with less people around.   However we are battling him overheating quickly and don't have either a cooling vest, or a stroller cooling pad for him.  We use a mist fan, but it doesn't really do much to help him.  He gets hot so quickly sitting in a microfiber based wheelchair, and not being able to self regulate temperature and Noah does not sweat like the rest of us.  So although it's his favorite thing to do, and something we primarily can only do in summer months - we can't do it as much because of the heat. 

"Life isn't always about fireworks. Your fireworks will come, and they'll fizzle out just as fast. Life's an experience, not a destination. All of us have the same destination, but not one of us has an identical experience." Marilyn Grey 

Love, 



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

Tuesday, June 30, 2015

Always A New Storm on the Horizon

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It feels like I've perpetually not been able to catch my breath.  There is a new challenge before me everyday relating to Noah for nearly the past seven years and circumstances often beyond our control associated with special needs parenting.  The wave of problems and complications seem endless.  Just as I do my best to resolve one problem only to have another one hits me with blunt force.  You'd think by now that I wouldn't lose my footing, that I'd be solid as a rock against these forceful waves, but I'm not.  With each passing storm I feel more worn and weary than I was the time before.   I ache for a break in the clouds but it never comes.  The phone calls keep coming, the emails, the SSI overpayments, SSI cutting Noah's monthly amounts, Medicaid denials, DMO problems, CES Waiver problems, therapies that we can't financially keep up with, Noah's Service Dog was diagnosed with terminal cancer... and then a whole collection of miscellaneous messes associated with special needs parenting that I purposely don't discuss so I don't have to stand in judgment of other people's opinions and criticism.  (Because society has yet to learn that art of never kicking a person when they are already down).


Chin up, I tell myself.   As I choke back the tears. 

Special needs parenting involves so much more than just caring for your child with special needs. 
I don't ever get a chance to be storm free.  A new one is always on the horizon.

There are some things I have to close the chapter on because I can do no more.  I've exhausted all efforts in all directions.  After we received the news about Noah's second service dog's terminal diagnosis, we just felt that we couldn't do this again a third time.  Three years and seven months later, and still no promised dog for Noah.  His first dog failing the program, the second gets cancer - and we've invested emotions and hopes both times.  How many times can one watch a dream die?   And I could be doing this circle for many more years without any real sense of the end goal in sight.   I have to let it go.  I tried, it didn't work, not because I didn't want it to, not because we didn't try with all our might to make it happen...


Noah and his 1st Service Dog, Samson
Echo, Noah's 2nd Service Dog Diagnosed with Terminal Cancer
I'm mad about SSI denying my appeal and request for waiver.  It's hopeless to fight a system that you cannot win.  Contacted a recommended disability advocate twice by phone and email; no response.   No one really probably wants to touch this.  A prior attorney I had to pay a $2,000 retainer to fight a $9,000 overpayment.  Now we are in a position where there is no money for an attorney - there is nothing, but me to fight the best I can on my own - and clearly I'm usually on the losing side of things.   And SSI just to play with me cut Noah's funding this month by $400.  Swell.  Perfect timing too with end of month bills.  And it's not like SSI really gives you their plan of attack.  They never really tell you when they are going to short you, or what your monthly will be.  They send you these fake little estimates in the mail that are never real... you can't count on anything they send you - unless it's an overpayment threat.

CES - oh God what a can of worms that all is.  I've unearthed more problems than I never imagined.  I'm sure that they kind of wish I'd just go away with all that I've stirred up.  There is so much to it, I don't even know if most families really even know or have any clue what is going on behind their backs. I can guarantee you the general public doesn't.  Then there is me that questions everything and has discovered some big wool is being pulled over lots of eyes.  I don't even know what will become of it all.  But I do wish everyone knew what was going on. 

My days are filled with fighting all these storms and then I have all these other opportunities that I'm endlessly chasing to help Noah; getting him back in good health after his lungs caught a bacterial bug, finding new holistic approaches to his diet, trying to fundraise for equipment he's outgrown that we cannot afford to replace - posting his outgrown equipment for sale - only to get beat up for trying to sell it (as the special needs community treats it like a crime if you try to sell something you paid out of pocket for) A phenomenon to guilt you into giving it up for free.  One could give away or donate nine items free of charge and attach a price tag to the tenth item - and still be a bad person in everyone's eyes.  There is a no-win situation there.

And there's even so much more besides all this going on....

I go to sleep and wake up and do it all over again.  I am trying hard not to let my struggles become my identity. 

Adversity Can Be Our Greatest Motivation for Spiritual Growth or our Deadliest Means of Discouragement. 

Love,



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