As Good As It Gets

I think I've been in a doldrum lately.  As likely evidenced by my lack of motivation to blog or talk about anything.  I know there are several contributing factors to this.  And it seems like I can't shake this feeling of having an unbalance of more problems than to the solutions and options.  There are days I wake up and don't even know where to start.  

So, City Council had their study session on the cell tower that is about to be built in less than 500 feet from our home.  It's predictability and tone was anticipated months ago.  Although the public cannot make comments at these study sessions, they hired an independent expert, and had speakers from Verizon give presentations. When I read their hired experts CV, I knew immediately that he wasn't a neutral party.  Having had a background working for a cell carrier and antenna engineer I knew what he was going to say before I even went.  My legal experience has served me well and I can easily sniff out which side someone is on.  He was simply hired because they wanted do find someone who would support their decision to build this tower.   He got up there and made these analogies comparing broad band widths to dogs that stay in fenced yards, and rarely if ever... do these dogs bark and cause problems.  Essentially he was intending to say that EMI (Electromagnetic Interference) doesn't exist, because broad bands don't interfere with each other.  

Verizon's testimony even more disturbing as they explain to City Council their desires are to have cell towers and antenna as close as every 1/4 mile.  That's crazy.  And that is just one cell phone carrier's goals.  They hone in on projecting the technology for the future... such as smart cars and headgear video games citing their need to act now for something that hasn't even happened yet.  I observed body language of others, the rolling of eyes, their posture, their crossed arms, shaking of their heads at any suggestion that they should think twice about denying any application related to cell towers for any reason.  It was a room divided but the majority is ruling these decisions.  There was even suggestions that the height minimum be raised.  So instead of a 50 feet tower maximum (even though a variance was given to the tower I'm going to receive which will be taller than 50 feet), they want to make the limits higher.   (Higher the tower, higher the intensity and impact to neighboring residents.) Really the goal of this study session in essence felt like how can we make it as easy as possible to overpopulate residential areas with cell towers with complete disregard for the human safety and well being of others or even allow have homeowner objections to the loss of property values and aesthetics. The County Attorney made a suggestion that since there was a health issue or concern (which was Noah) that they couldn't take into consideration all my other neighbors who were upset about the decline in property values as a result of a tower and aesthetics.   And then I was reading Noah's instruction manual on his power wheelchair that warns against the effects of EMI...

"The interference (from radio wave sources) can cause the powered wheelchair to release its parking brakes, move by iteself, or move unintended directions.  It can also permanently damage the powered wheelchair's control system."  This is such an extensive warning they actually dedicate two full pages in full detail of EMI warnings.

 

http://www.permobilus.com/manuals2/36.pd

Yet, City Council remains in denial.  Short of the tower being built and me saying told you so... and/or pursing legal action against everyone... I'm not sure how to get them to admit they have a significant problem with a medically fragile child in the neighborhood in which they want to build cell tower.  They don't have a fenced in dog... they have a dog that is about to maul the neighborhood and specifically my little Noah.  But they care not one bit.

And now we transition into other problems on my horizon:  I submitted my 3rd revised request for a flooring modification for Noah after it went from a "firm denial", to a "soft approval" pending State's final review.   I'm obviously frustrated about it, and I know in many ways what I'm experiencing is purposeful in nature.  I also filed two more appeals because I feel like procedures are being violated that are resulting in denials for items Noah didn't even have a chance to formally ask for, unique in that even a Judge can't adequately reverse a denial or make a determination if the denial was appropriate in any fashion because there is no supporting documentation for review.  I still think Section (6505) of the Social Security Act's intentions was designed to prohibit prescriptions or medical treatment outside of the US and described therein as (benefits).  I do not think that rule's intentions were to bar adaptive equipment purchases outside of the USA.  But I don't much get the feeling that the State really wants to dig into that matter, especially because if they use it as they are - it prevents hundreds of families from accessing things they need and thereby saving the State thousands of dollars they don't have to pay out to assist those in the special needs community.

There are miscellaneous things too that I need to deal with.  I given most of Noah's equipment away, which leave him with nothing to replace it, as many were out of pocket purchases and he has outgrown everything - not skill wise, but size wise.  He needs it all replaced which is an impossibility financially, but there are lots of things that I need to obtain for Noah and can't financially.  There is no MNRI camp for 8K-9K, no Dolphin Therapy, no ABM Intensives... can't find a way to fund getting to California for two weeks to obtain a service dog.. the list feels endless and if I rattled it all off it would take up three paragraphs just in itself.

I've been asking his speech therapist since September to do an evaluation for a smaller device so we can mount it to Noah's wheelchairs and he'd have access to it more frequently.  And I keep getting excuses, a teaching schedule stands in the way, or Noah has to trial three other devices even though he already knows what model is successful for him... or that they have to find another rep to order it from because they don't like the vendor... (which they can't do).  I'm so tired of excuses.  I don't get to hide behind excuses.  I can't say you know what I don't feel like dealing with 101 problems and issues in my day.  I have to suck it up and get it done because Noah depends on me not to drop the ball.  I don't know how to light people's fires sometimes.  They drag their heals until I feel like I could scream.  We're not talking days or weeks - we're talking now 8 months later...

Noah's DME accidentally broke his Mygo Leckey Chair when we were trying to fit knee guards on it. It was an accident, but that's a minimum of two more weeks we have to wait to have something fixed.  In the meantime he knows it is broken and swing his leg over it, so there isn't much I can do with it, and it's terrible for his hip positioning problems.  Yet, I'm quietly biting the bullet, because his DME has been making a valid and successful attempt at better and prompt customer service for Noah and I happen to really like his new assigned representative and she's giving a 100 percent effort right now.

Noah's entered in a bike contest to win an adaptive bike... for the third year in a row.  Yes I know what you're thinking.  A contest?  I enter lots of them for Noah as that is the only chance he has at many pieces of adaptive equipment.  We know the chances are slim - yet like a moth to a flame we can't help but convince ourselves our children have a chance at being a winner.  And in the back of your mind you always wonder is this as good as it gets?  Am I forever destined to have to think outside of the box to get anything Noah needs?  If you happen to want to swing over and give Noah a vote this is the link to do so. https://www.friendshipcircle.org/bikes/2016/02/noah-w-2/

He's 1 of 600 children entered in the contest.  The hopes were they'd get enough donations to fund all 600 bikes - but my gut instinct thinks that was likely a lofty goal.  I am amazed though at the number of votes Noah has received.  Last year he only scored around a 100... so I'm very appreciative of the support people are giving him. 

Noah's T-Max Shower/Toilet chair that was funded by the county's emergency funds is also being held up by customs.  I'm not surprised, there isn't anything in our lives that actually is easy.   I know they can't hold it up forever as there is a medical provision that they have to allow it through customs because I've gone down this road before with some of Noah's other equipment that has had to be ordered from Canada and the UK.  It's just getting them to realize what it is, and then they will likely assess me a fee an additional customs delivery fee.  But this means I may not see it this week, while I communicate back and forth with them.  I have to essentially convince them not to return it to the UK by the 29th of this month.  One more extra added event in my day. 

And we're going from a great 72 degree day to tomorrow's predicted blizzard snow conditions.  I'd be lying if I said I was looking forward to trying to keep up with shoveling blowing snow all the while checking on my disabled son that has to stay indoors laying on the floor while I shovel... and if you think I have neighbors who will help - think again.   Kindness costs money.  Let's just be real - and how does one budget to hire a snow removal company when the majority of them charge you based on the inches of snowfall they have to remove?  I cannot predict mother nature's furry and she could screw me with one hell of a bill if I gamble on business contracts based on snowfall totals. 

That's it in a nutshell...

Love, 



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

Battle Fields, Blessings & Backaches

Monday I received an email from Noah's CCB notifying me that Noah now has a new caseworker and that implied that I had a requested caseworker reassignment, with the words "I’m sorry that working with Victoria did not work out for you and Noah."  They would have been better off to say something like they were rotating caseworkers, or just doing a basic reassignment.  To insinuate that there was a problem that I wasn't aware or that I somehow was the reason for the change was a bit unprofessional.  So now Noah has a new caseworker and bless her heart they probably have painted me to be a complete nightmare and she's losing sleep over managing Noah's case.  I have to laugh because I'm not sure really what else to do.  So, Noah has a new caseworker and who knows really why.  He's on his third one now.  And I don't have the over excited warm and fuzzy feelings because it feels like they're are all on the same "deny Noah" team.

Speaking of denials... I guess the State decided they wouldn't stop with the PPod accessories.  I had verbally asked if they'd consider funding a dietitian who would prepare specialized food for Noah. Again, I never had the chance to put in a formal OT request for it or obtain a doctor's letter of medical neessity for it.  And received a denial under 10CCR 2505-10 8.503 That is a really broad 55 page set of published guidelines and rules under the HCBS (CES) Waiver.  Finding what they are referencing will be a needle in a haystack under those guidelines.  And yet again, because I didn't formally request this in writing and they issued a denial I don't have much of a leg to stand on in an appeal and they know it.  But that's fine if they want to change the rules and issue denials without having any written request before them, then I'm no longer going to verbally throw anything out there.   I will make sure my communication is limited and any request will be only in writing I will never verbally ask if something "can" be asked for on Noah's behalf.  As they say there is more than one way to skin a cat and I'm not into playing these kinds of games.  Can you imagine what a big waste of time would be if each caseworker was forced to issue a denial letter each time a parent asked if their child's waiver "might" consider covering an item or service?  Or wait.. perhaps they're doing this to just me?

Family Voices assisted in the coordination of a meeting between us and the Department’s Medicaid Director who oversees the Health Programs Office which administers Medicaid and Child Health Plan Plus (CHP+) health program benefits, delivery systems and provider relations and the Director of the Office of Community Living.  If you are like what does that mean?  It's really the top of the food chain so to speak within the State's Medicaid structure - the Executive Team.  Obviously, I had some reservations because my last meeting with the State resulted in Noah receiving even more denials, and me filing even more appeals.  And you walk into these things knowing that the very real possibility exists that you're either about to shoot your self in the only remaining foot you had left, or you'll be able to effectively demonstrate there is a problem and difficulties that require someone's interests and attention.  And you never really know when you become an advocate for your child or the special needs community how the information will be absorbed and digested and if it will spark anyone to implement change. 
 
When you take it to this level there is no longer any way to keep your anonymity.   But given that I've been speaking with the press and news reporters, and publicly blog about all our difficulties keeping your name on the down low isn't really realistic.  I am remaining optimistic until I have reason not to be.  I am hopeful that I was able to lay a foundation for wide trail of problems that I hope they didn't find any of this the "norm" for parents who have children under the CES Waiver.  Although some things left me still concerned.  The notation that the appeals process is in some way beneficial or necessary to establish and clarify cloudy rules.  I'd like to believe that the State wouldn't purposely force any family into appeals simply for clarifying their own rules.  And even if that were the case then there would be no need for them to file Exceptions to Initial Decisions to override a Judge's ruling.   And sure does the State need "restructuring?"  Absolutely.  But that isn't a simple fix.  That takes legislation - if it even has a chance of passing, I think the State prefers to be intentionally vague on interpretations of written guidelines so that they have flexibility in how they chose to conduct business.

I'd like to believe that things will take a turn for the better for Noah, but I'm just not sure yet.  I think only time will tell. 

We did receive Noah's new Vitamix which I wasn't sure we'd see.  And I'm so relieved as Noah's first Vitamix from 2010 had finally had enough of blending three times daily.  It was emitting a bad smell and not blending smoothly anymore and stalling periodically entirely.  For the first time in probably over six months Noah's food was the perfect consistency.  

And I have been passing on Noah's equipment and devices that have grown too small and seen a picture today of a little boy in California, Thomas, using Noah's old things.  And it gave me such a feeling of of peace and happiness.  There are days when I sit here trying to find the purpose for it all - the meaning behind the struggle, my fierce drive to fight on for justice and fairness for the medically underserved, and always at the heart of it Noah who is the center of my universe.   I dream of a world that makes it so much easier for those with disabilities.   I want society to care about them more than they do.  We live in world with such potential and a host of possibilities.   I just can't accept this is as good as it gets for those with disabilities or for their families who love and fight for them every day of their lives. We can do better than this. 

I've been lifting and carrying Noah around a lot more lately.  He just wants to be a part of everything.  Wants me to take him outside so he can be with his little brother, wants me to carry him to watch TV in the master bedroom, to lift him up to look into the refrigerator.  To open the door to after it rings so he an see that his incontinence supplies have arrived.  I am his legs, and considering our house is primarily carpet Noah doesn't have adapted equipment that really works well or propels on carpet.  He is stranded without me.  He knows it, and I know it.  My back is sore, and my right shoulder feels like it's on fire.   It's been like that for three days.  I keep thinking it will get better.  But so far no luck.  I rested for an hour today while Noah had pool therapy on a padded bench and it felt so good, just to sit down, and take a mini time out.  The heat of the pool making me sleepy and content.  And I knew Noah was safe with his therapist in his special needs life jacket so I didn't feel like I had to be on guard worried if his face would dunk in the water or if he'd be in any danger.  Of course lifting him back into his wheelchair after he had rinsed off in the shower only reminded me that my relief was to be short lived. 

Tomorrow is another day.  And I can and will do this.

Love,


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

SB-38: The Quest for Transparency & The Consequences to Advocacy

Noah's blog is filled with posts about our ongoing struggles with Medicaid and Noah's CES Waiver.  It's important for people to know the struggles that we face obtaining services that should be covered benefits for Noah.  And we should document and discuss the real truths of why benefits are being withheld from Noah.  

We started realizing in 2014 that there were problems with his financial statements from his CES (HCBS) Waiver.  What the state had been reporting he spent wasn't at all what he was receiving.  When asked about why they were paying out more than what they should have, the response was they were assessing a 3.5 percent FRE fee (for the cost of doing business) and taking that 3.5 percent fee out of Noah's CES (HCBS Waiver) yearly cap.  This year they reported that he used way more in respite care than he did, as reflected by the respite care provider's W-2, in comparison they pocketed over $4,000 themselves just in the respite category alone.  They reported two different figures for the end of 2015, and neither were correct, nor did they really have an explanation for why I received two very different end of year reporting statements.  


Then in December of last year finally someone took notice that Rocky Mountain Health & Human Services one of Colorado's 20 CCB's (Community Centered Boards) that handle the CES (HCBS Waivers) were found misusing funds in an audit.  You can read the news articles at the following links:


http://www.denverpost.com/news/ci_29268965/denver-audit-finds-shameful-misspending-intellectually-disabled

http://www.thedenverchannel.com/news/front-range/denver/audit-reveals-non-profit-misused-18-million-in-tax-payer-dolars

Senator Irene Aguilar sponsored  and introduced a bill called SB: 16-038 on January 7, 2016.  I was hopeful.  Finally.  After all these years, even before Rocky Mountain Human Services got caught with their hand in the cookie jar, I knew there was a problem.  Of course Noah's CCB (Imagine) did their best to deflect any negative perception their way even going as far as to release a Youtube video that can be found here:
https://www.youtube.com/watch?v=tnP3w7a5HZk&feature=youtu.be

After watching this video wouldn't one think that it would appear that CCB's want people to believe that they are not abusing funds that are intended to go to our community's most vulnerable members?  You might think CCB's would support this bill - after all those who have nothing to hide... hide nothing at all.  But Imagine quickly went on the defense and testified before the Senate Committee opposing this bill.  Because they claim they are already transparent "enough" and that it would be too "costly" to be transparent about their financial practices.  Many parents gathered to support this bill statewide, I am not the only one.  But as the CCB's put it, "they have no fear of a few angry parents."

But as parents to severely disabled children we aren't the only ones who should be angry about this.  All of you as tax paying US citizens should be angry. Very angry. You deserve to know where your tax payer dollars are going.  Are they going to help children like my sweet, helpless Noah who is dependent on these programs for his quality of life?  Or are they being pocketed so those managing Noah's benefits so they can pay for things like Costco memberships, or going away parties... and personal internet services?  Who knows where else the money is going, because none of us will ever know that without passing a bill that will force these CCB's into a much overdue audit.

What I do know is my accounting statements are all over the place for Noah, and his CCB is reporting they paid out services on his behalf for things he never received.  So where did that money go if it didn't come to Noah and they report that it did?  These funds don't just roll over year to year.  What doesn't get used in a year - disappears.   And how much money a year does a child have under a CES Waiver Cap?
In 2014 ($36,400) in 2015  ($37,310),  and for 2016 ($37,955).  That's a lot of money.  But Noah's CCB does their very best to deny as many requests as possible to prevent children like Noah from accessing those funds.  The majority of all children under the CES (HCBS) Waiver don't get to access much of that.   If we were allowed access to that complete funding for Noah yearly can you just picture how much better off his life would be?  The recovery and progress he could make? 

To say the least my advocacy and support of SB: 16-038 has continued to ruffle even more feathers.  As the very moment that I was giving a Fox 31 news interview, Noah's CCB left a phone message denying everything before them.  Telling me once again to go appeal it.  As if it were a dare.  I can tell you that retaliation is real.  I can tell you yes without question there are consequences if you attempt to shine a light in spaces that people want to keep dark and hidden.  Parents are hesitant to speak out, as they fear they'll wind up just like me facing even more denials than they were before.  While many support my efforts, few are willing to rise to the occasion of identifying themselves publicly. 

You can watch my Fox 31 news interview here.
http://kdvr.com/2016/02/19/should-disability-boards-that-take-taxpayer-money-have-their-records-open/
I was pinch hitting for another family that was out of town at the time of the media's request for an interview, so I stepped up because there was no one else to talk to the press.  I can assure you my recent media interviews aren't something I find an enjoyable hobby.  But someone needs to stand up so be it, it happened to be me.

I knew I already pissed off the State last July when I brought several issues to the table - including addressing CES funding Caps which resulted in a denial of adapted clothing even though I had an approval for four months a move that was made out of spite after I challenged them making up rules that didn't exist under CES guidelines to block Noah from his covered benefit.  I did get the Order back from the Court and a Judge agreed and reversed their denial.  They had until February 23rd to File An Exception to Initial Decision, and I know I shouldn't have been surprised but they filed a request for a continuance on February 22, 2016 to obtain a court transcript of the hearing, stalling and ultimately after they obtain their transcript can and most likely will still file their Exception to Initial Decision.   So as you can see they make it as hard as they can to make sure you can't even get close to your child's yearly cap.  They now have until March 25, 2016 to file an Exception to Initial Decision to attempt to block me from the Judge reversing their denial.  Mind you I won in court.  I won.  You'd think they'd finally concede and confess that what they are doing to Noah is wrong - especially when you have a Court Order that states what the State is doing is against guidelines. 

 

When I returned the call of Noah's caseworker after my news interview I was pissed to say the least.  While I wasn't mouthy to the point of being out of line or obscene they knew they had pushed my buttons way to far.  I think they expected I'd just quit with appealing, but I made it known I will continue to appeal and reminded them my track record for winning in Court and reversing their denials is good.  Within twenty minutes after that call I received an email from a supervisor saying they changed their minds on one of the denials and said I could resubmit with more information for reconsideration.  You might be thinking they were playing a nice card.  But I can assure you that isn't the case.  When one of their clarification points being they don't want to approve something because they worry Noah's drool on the floor could be a safety issue, you know they're looking to pick anything out of thin air to support a denial.  And just for the record if Noah drools or throws up or even if he cries tears on the floor I just don't leave it here.  I do clean it up - even if that means I have to spot treat the carpet.

I plan to resubmit the request in fact after I finish writing this blog, but let's just say I already know how this is going to go.

So what's the other mind blowing part... because none of this could be enough to make any parent go crazy right?  

The State also entered a denial for PPod accessories for Noah.  For those of you no familiar with a PPod it's an adaptive seating device.  We paid out of pocket for Noah's PPod by using a credit card a few years ago, but could not afford he accessories he also needed to go with the chair.  I had learned that another family had been approved to receive the PPod so I mentioned I wanted Noah's accessories to be funded.  And asked about the procedure.  Shortly after the other family's PPod went from an approval to a denial and the State gave the reason is they changed their mind because they decided the request was a "home furnishing."  While I strongly disagree that an adapted seating device that only a disabled child can use or benefit from is a "home furnishing." They knew they could not use that basis for a denial for Noah since Noah already owned the chair and simply needed accessories.   I asked how I could get the accessories considered, so they anticipated my request, but I hadn't had the chance to submit a formal request or obtain an OT evaluation - a requirement for consideration.  Yet I got a call saying that they were denying it because they were not permitted to be making purchases for any item outside the USA.  The PPod comes from a UK vendor. 
They cited in the denial I received in the mail for this "anticipated request" :

Section 1902(a)(80) of the Social Security Ac, P.L. 111-148 (section 6505) 8.603.40.A.2.f&g. and 5.f. & 11

What this means:

Section 6505 of the Affordable Care Act amends section 1902(a) of the Social Security Act (the Act), and requires that a State shall not provide any payments for items or services provided under the State plan or under a waiver to any financial institution or entity located outside of the United States (U.S.).

This effects any child under any Waiver in the United States.  This is a big deal.  And I mean big deal.  Countless children seek equipment outside the US and use Waivers as a source of funding to do so.  And here's the interesting part.  Noah has received anti-suffocation pillows from the UK.  I appealed and won disposable pillowcases for those anti-suffocation pillowcases (which are a reoccurring order) also that come from the UK, Noah's life jackets came from Canada... A toilet chair that was granted under State emergency funds (but not the waiver) also came from the UK.   Lots of things Noah needs, like many other children who have special needs, come from non-USA vendors.

So now I'm told I have to re-appeal the pillowcases (even though I already won once...) because of this new rule!

If your head is spinning from reading all of this - can you envision how I feel?  

So where do I go from here?  I don't know.  I don't know how to be silent when I have knowledge of an injustice that is happening.   I don't know how to sit on the sidelines and pretend I don't see it - pretend to be blind to what is happening.   I don't know how to stop caring and feeling so desperate to help Noah and children like him.  But no one is paying attention.  I can write about it, I can give interviews about it... I can try to fight for change... but my voice only carries so far.   I do dream of someone coming to my rescue.  Fighting for me, on behalf of Noah.  I'm so tired.  I'm exhausted in fact by what they're putting me through.

Sometimes all you can do is pray.  Without having any clue that Noah is still being blocked from adaptive clothing - even after a court win and now a continuance likely for the State to seek a reversal, I received a few adapted clothing shirts in he mail as a gift from the Butterfly Fund.  They had no idea that I was feeling beside myself, Noah's skin is suffering badly from nummular eczema, sensitive skin and sensory problems. There are nights when I cry myself to sleep because I don't know what to do.  I cry, pray, cry some more, pray some more.  And I know God sees what is happening and weeps for me.  I know God cares, I know he does or he wouldn't have sent an angel to send Noah shirts - especially when no one knew about what the State is doing by attempting to stall and/or block my win.

Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing - but I'm not dead
Tomorrow's another day
And I'm thirsty anyway
So bring on the rain
Jo Dee Messina

 Love, 



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

I Am Cell Aware

The question on everyone's mind: has my new neighbor (aka the camouflaged cell phone tower) moved in?

No, as of now we are currently cell tower free.  But, I'm not at all hopeful that it will remain that way.  The really interesting thing is when you speak out and advocate for your child, you'll find really two groups of people.  Those who fully support you, and those who don't.  We were really fortunate that the people who understood and supported the real impact and concerns that a cell tower will have on a child like Noah, outweighed the criticism, and in turn I found myself becoming even more educated than I ever was before on the issue. Experts and professionals in the field reaching out to me via email and phone to lend a hand and their support with keeping Noah safe from RF harm.  And while they they likely feel like their hands are as tied as mine have become, they've offered tremendous support and reassurance that EMF, EMI and RF are very real problems.

The ironic thing is none of this would have been on my field of vision if hadn't been for Noah.  I probably would have been one of those people who would have been like a cell tower?  What's the big deal about?

I wouldn't have even given it a second thought.  But Noah changes everything.  From the moment he was born it changed everything.  How I seen the world, I how seen others, how others react towards me, and the things I had to learn to care about.  Ten years ago I probably would have been voted least likely to become an advocate of any kind.  I was in my own little world then - and now Noah is my world.  The really frustrating thing is when you have to come to grips with understanding that you are just one person, who can't move a mountain alone. The feeling of being powerless leads to feeling helpless. 

But I can make other people aware.  Noah has a beautiful blog dedicated to our life's experiences, and it serves as a tool for so many who find it and read it, regardless of what they decide to take away from it.  Maybe it makes someone think about something they hadn't before, or makes them feel something they didn't know existed within them, or offers comfort and understanding on a difficult day.  And so I continue to talk about many of the things that effect special needs children and families and one of those is cell towers and radio frequency, and electric and magnetic fields and how they can interfere, known as EMI, with medical equipment and wreak havoc on a child's neurological sensory sensitivities like Noah.

And it's taken me years to figure out these things, I didn't just wake up one day and think to myself, let's fight a cell tower today.   I've learned over the years what can create interference with Noah's devices; a large antenna that a neighbor would install on a rooftop, a weather station... and now in the land of smart meters.  Which has grown complicated for us in the last few months since our meter caught fire and we've been dealing with Excel switching it out for something that would cause less or no interference - something they have been resistant to doing.  While our meter has been switched out "less powerful" smart meter,  that isn't reporting every five to ten seconds, I still have a model of a smart meter, that still reports frequently... just not as frequently.   I've also witnessed Noah's triggers around certain electronics, devices, gadgets... among a host of lots of other sensory triggers.  I didn't learn all of this overnight.  I've spent countless hours troubleshooting problems that come along with special needs parenting.  Dwelling on solutions to problems not knowing how to solve them or what was causing these problems for Noah.  Trial and error.  Sometimes the answers didn't come for months.  I had no idea what was causing the buzzing and static on Noah's devices before we moved to our current home until one day I opened up the window in the master bedroom and looked at an antenna on my neighbor's roof that had been installed sometime over the winter and held up a receiver to the window and realized how much more intense the interference was with Noah's devices. 

I look back on things now - like how sick Noah would get in the car as an infant, toddler and even young child having no clue as to the cause, and realizing how sounds and vibrations and noises, things that I couldn't even hear - that he could rocked his world into a gag and vomit reflex.  Your life becomes incredibly complicated when you have a child with severe disability.  

A company called I Am Cell Aware reached out to our family after they heard about the cell tower being built in our neighborhood and sent out two phone deflectors in the mail.  We also received a RF meter which I'm sure will be put to good use for before and after readings of our home if we're about to have a cell phone tower built on top of us.  There was a dramatic drop in RF before and after the installation of the I Am Cell Aware deflector. So dramatic in fact, a reading from 66.30 to 0.036.  A huge decrease in the RF that our cell phone was transmitting.  Granted for me, cell phones really aren't a big part of my day.  I operate primarily by landline and rarely use my cell phone.  It exists solely in the car - and I'm lucky if it even has a charged battery.  But in my case it is necessary in case Noah were to have a medical crisis while we're on the road or if we break down.  We don't live in a society anymore where someone would pull over to the side of the road to see if we needed help, or to give us a ride without me calling and paying for help.  It's sad, but it's reality. However, Noah's daddy uses his cell phone much more than I do, because he's a semi-truck driver and needs it to coordinate his deliveries.  So, I'm much relieved that this deflector is actually making a difference.

It's ironic as I look back when I was working before Noah's birth and relied more heavily upon my cell phone than I do now, and remember how hot the ear I primarily held it to got, and how my ear literally ached or felt like heat was generating into it.  And I never ever ever gave it a second thought, not once. 

But I keep thinking people will never ever hand over their cell phones, or drop the technology they have become so overly addicted to, but if a simple deflector like that an reduce RF, then why aren't we focusing more on biologists, physicists and engineers that could put their heads together and find ways to still allow for technology to thrive without making us sick or interfering with already medically compromised and those in the disabled community like Noah.  

I Am Cell Aware has created a promo code to assist Noah.  If you use the code "Noah" 20 percent of sales will be donated to him and spreading awareness about how RF impacts many children with neurological conditions like Noah.   We thank them, and so many other organizations and individuals that continue to reach out to us with such love, understanding and sincere desire to help.  You can purchase your cell phone deflector here.

Still want to learn more about how EMF is effecting you and your children?  Here's a great TED talk:
https://www.emfanalysis.com/tedx-wireless-wake-up-call/

I loved this cartoon from Katie Singer in Radiant Times:

Love,



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

Butterflies, Angels and Adorabelly on Valentine's Day

Noah's little brother was exceptionally excited for Valentine's Day this year.  His awareness of holidays has increased now that he's older and realizes that holidays are gift giving days.  Luke's excitement fuels Noah's excitement and he reads his little brother's energy in anticipation of fun.   Luke is still in a phase where he wants to wear identical clothing to Noah.  It's really cute on how much he really wants to be like his older brother.  He'll search his closet to see if he can find something that matches Noah.   So it was really cute that a business called Adorabelly Design made matching Valentine's Day shirts for the boys.  One shirt with a blue truck and the other with a green truck each hauling hearts.  They were perfect for Valentine's Day.  Adorabelly also does a lot of other custom items, and specializes in G-tube covers.  You can check out the store at this link.

Noah was gifted with the sweetest butterfly cookie holding a heart from the Butterfly Fund and Mia's Cookies and received Valentine's Day cards from Angels Sending Hope.   Both were the most touching gifts.  There are days... most days in fact where you feel that you and your child not on anyone's mind.  So when something like these beautiful packages of love find their way to us, it's really a reminder that someone out there cares.  And we need that.  Most importantly Noah needs that.  To have a severe disability like Noah has, and to be non-verbal and be cognitively aware and essentially trapped in a body that doesn't work for him, is understandably frustrating at times for Noah.  I can read it in his eyes the yearning to play with toys that his brother has, or aches for the world to see him, like the world views his typical sibling.  As Noah grows older I fear he feels like he's in the background, even though he's very much front and center to us. 

So when he's thought of and can help open a package that arrived just for him, he understands and I think it really brightens his days, and brings him a spot of sunshine.  We had wanted to do something really special to celebrate the day.  We contemplated dinning out, but knowing that the crowds would have done Noah in, and that it's germ season that was out.  We opted for dinning in at home, and his grandmother found the boys these cute little individual heart cheesecakes at the store for desert, which was perfect for Noah since he demands cheesecake after dinner, nightly.   That's the tough thing, I always think big, and then have to reel myself back into realize a lot of these things just aren't realistic for Noah.   If it's too cold or windy, we're indoors, if there will be too many people and crowds or long waits of any kind the game plan is out.  But sometimes the best plans are the ones unmade. 

I am always trying to keep gifts for the boys equal.  I found these chocolate heart suckers at the store and knew that Noah could suck on his with assistance.  It is often hard to keep things the same when you have children that have different physical abilities.  But, I'm trying.  I don't want either boy to ever feel left out of experiences just because of the hand that life dealt all of us.  I paired their suckers with a Lion Guard bath towel for Luke that I found on clearance and and a Disney book for Noah.

Noah is really into books at the moment.  He could have someone read to him non-stop all day long and not get tired of it.  He's also make great efforts to learn how to spell on his AAC device.  Who would have ever thought Noah would learn to spell words.  But we are working on a literacy program and of course reading books with him as much as we can will help him to learn to read and spell words.  I kind of wish there was a an adaptive chair that was made for a parent and a child to sit in together.  We sit Noah on our laps but he slouches and I can tell sometimes the way we have to hold him might bother his hips and sides of his legs, he arches to re-position himself.  It would be neat if there was a couch designed for families like ours where we all could sit and cuddle together comfortably and read.  But even if something of that nature existed I'm sure it would cost as much as a new car, and wouldn't have an insurance code for funding. 

I watched Noah's daddy read to him nestled up in the same recliner chair that we used to use when we bottle fed him as a baby in his nursery, today.  And I love my spouse, my partner, Noah and Luke's daddy more and more for the person he has been all these years and the incredible love and devotion that he has.   I couldn't do this without him.  And I genuinely mean that.   Noah takes the very best of the two of us.

I love you
for all that you are
all that you have been
and all you're yet to be.

Love,



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

Return To Warm Water Therapy

Nearly a full year after Noah's former warm water therapist retired, her replacement was hired.  We always have some reservations when starting up with a familiar therapy but with a new therapist. You never know what to expect and if Noah will welcome the change and accept another person into his routine.  Our first session went well, Noah seemed open to the fact that he was experiencing a different therapist in the water.   I was worried that child before him would cause him a sensory gag or sensory challenge.  Last time Noah had a child that came after him, but not before him.  This time it is the reverse.  Noah's sensory challenges to other children that he is unfamiliar with or that he feels gets too close to his personal space is typically a gag and vomit trigger.  But, staff and the child's attendants do a great job of understanding Noah's challenges to others and I'm so thankful they aren't offended by the knowledge that Noah often doesn't respond well to change, strangers or others too close to him. 

I'm trying to get used to not writing therapy notes during Noah's session - something I did for five years prior.  Now I'm just mom watching Noah do therapy, without secretary duties.  Not that I necessarily minded, but the routine is different for me too.  Some of what we are doing exercise or therapy wise is different, but in a good way.  Noah seems to be responding well to doing new things.   Our momentum started off slow.  Shortly after our first session, there was a mini accident in the pool which caused it to close for a few weeks until they could get the chlorine levels back to normal.  So today was our second time back.   Noah's new therapist is easy going and relaxed, and super helpful. 

The current bath seat however at pool therapy is an Otter and it's really rough mesh fabric is wreaking havoc on Noah's skin.  That is why we had to ditch all products that we have here in the US that are similar.  Noah had a Manatee bath seat at one point and a Columbia Bath Seat.  Both from that standard mesh that vendors use that irritate his skin and cause instant skin breakdown, abrasions and rash, and also sensory wise drive him to the moon.   I asked for a really long time for the current shower chair that his therapy center has before they finally ordered it to help him and other children like him who needed it.  

There is this little voice that sits on my shoulder that says... Stacy... you need to reach out to the therapy school and attempt to explain to them that long term this shower chair with terrible mesh and a broken wheel isn't going to cut it and ask them to order something that is hygienic for all children to use, soft for sensory issues, a bucket seat design so that children can't arch out of it... that isn't made from mesh... and oh it costs only around $3,800.... yes they'll like that part, oh and it comes from the UK.   The incredible T-MAX Shower Chair. 

Speaking of which we asked to access emergency funding through Noah's county services.  After documentation that Noah needed the T-Max and why from his local DME, and treating physician, his caseworkers consented to ordering him one.  I'm reserved on celebrating that a T-Max will be in Noah's future soon because I haven't received email confirmation saying it's been ordered, and likely because items and resources for Noah have been so hard to access lately.   I think I will reserve celebrating until it actually arrives and is delivered to the house.   These days seeing is believing.

No, Noah's T-Max shower and toilet chair won't be something that I can get from our home to warm water therapy, so the therapy school would indeed need to order their own.  While his therapy school hosts a large yearly fundraiser in March of every year that generates a lot of funding for the school, my gut instinct says they will be really resistant to my suggestion that they purchase one - just given how hard it was to convince them that holding Noah in our laps to wash him after getting out of the pool was a growing safety concern with a child who is no only slippery when wet, but loves to attempt to arch out of your arms at the same time.

Yet, I don't know how to quietly just put my tail between my legs when it comes to Noah, so in my mind I'm already going over the best way to approach asking the therapy center to invest in a better and safer product to bathe children with special needs after they get out of the pool. 

Noah's HCBS Waiver approved the funding of two life jackets for Noah at the end of the year.  One that allows him to be upright to some degree and one that allows for him to lay on his back.  We've attempted and trialed a lot of adapted swim devices with little success.  Noah's high tone in literally every product we've tried he could throw himself backwards with his tone and dunk himself.  Frightening for a parent when you know you have a child that is a high aspiration risk.  I was cautiously optimistic about the success of these specialized life jackets that are manufactured in Canada, simply because nothing else has worked.  The price tags on both weren't great, but there are really no good price tags on anything Noah needs.

We attempted the life jacket that allows him to float on his back first, that one seems really stable and great, followed by the one that I thought would hold him upright.  But that one makes him look kind of like an unsteady bobber in the water and I feel it's more unpredictable than the back float, and likely without constant supervision and occasional correction that Noah would find a way to roll in it face down.  I think they both will be helpful for Noah.  Both devices require two hands to put them on Noah, only because of his lack of independent head, neck and trunk control.  Overall, I would feel comfortable recommending both of these products to other special needs parents who have children who are severely disabled and often need all available support options in a product.  While, pricey I feel the level of safety and the design of the product is good.  For more information about these life jackets click here.

Of course these new devices add to the gear I tote into therapy; a wheelchair, a folding therapy mat, a mesh bag with two life jackets, a pool bag with a change of clothing, soap and supplies... and of course the extra things like a jacket when it's cold.  And there are no handicapped buttons I can push at the door.  I have to find a way open he door with all of this, hold the door with my foot and push Noah through first in his wheelchair, pray all the gear I have squeezes in fast behind me, so that I can enter a code for the second set of doors to open so I can also get through those... I'm sure to others I look like a complete mess with just getting into the building.  Of course I wish I had more hands.... or help or both.  I manage however, making what really feels impossible become possible. 

It's like that saying "if it doesn't challenge you, it doesn't change you.  Swim harder."

Love,



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

SweedieKids is Sweet!

If you have a child like Noah, chances are you still have a need for bibs.  And not just any bib - but a bib that can go the distance.  While we still use a large amount of disposable baby bibs (which are quickly becoming too small for Noah) during meal times, we still use cloth bibs for all his drink breaks.  Noah doesn't drool constantly, sometimes when he's excited or has been laying in one position too long, so we don't use them throughout the entire day.  But, bibs are a very much a part of Noah's everyday life.  I'm always on the hunt for cute bibs that have style and character, ones that work well, and ones that will fit a child of Noah's age. 

We've been playing with some SweedieKids Bibs for Noah lately.  I like that they carry an XL bib which works well for Noah.  His problem isn't so much neck size but the length that we need a bib to be to cover as much of his clothing as possible.  Noah like a lot of children who have Cerebral Palsy with athetoid movements can get quite messy at meal times and while drinking because his arms are always swinging.  He gets food on us, the floor, himself... his clothes... the dogs fur is even plastered with food occasionally.  So bibs are huge or we could otherwise go through multiple outfits a day.

I really like that SweedieKids even incorporates their clients into their product, even asking them to help pick out their own line!  Every successful business and vendor hat really listens to the special needs community that they serve will inevitably find loyal and ongoing customers.  SweedieKids washes up really nicely and doesn't fade like many flannel printed bibs do after being washed.  I also really love that SweedieKids gives back to the special needs community and donates $1 of every purchase to a charitable organization benefiting those with special needs.   (Did I also happen to mention the owners grew up in Sweeden?  Hence he name SweedieKids).   And their customer service is exceptional, they are always very prompt to respond and address any questions or concerns. 

I also love that SweedieKids will ship their product all over the world.  I wish all businesses that made products for the special needs community would do that.  I have a long list of things that I would love to obtain for Noah that I have no way getting here from across the pond. 

So you're probably wondering with everyone making a bib these days what makes SweedieKids special....

*First they use a really soft jersey knit fabric, that stretches and gives as the child moves.
*The way the bib drapes in the front assists with catching drool, liquids, or dissolved foods that seep out of a child's mouth
*The bibs have three layers to make sure it is extra absorbent; a jersey knit front, a sweatshirt flannel for the back, and a middle layer fabric made from recycled bottles
*The bibs are available in 4 sizes: small, medium, large and extra-large

I hope that SweedieKids continues to grow and expand their line... perhaps even designing something for us moms and dads, like a stylish apron/cover while we're feeding our child that has athetoid movements... wink... wink.... or even a large square bib that really covers more of the child's clothing or a slip into bib with sleeves! 

Noah pictured in an X-Large SweedieKids Bib

Noah's new SweedieKids Bib is part of their Limited edition Valentine's Collection.  And true to the bib's print, Noah loves it!

SweedieKids gets and A++++
To purchase yours click here

Love,



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