Wednesday, January 27, 2016

Another Administrative Court Appeals Hearing

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I wrote this post two weeks before Christmas.  I was going to post it sooner but it felt like it was smothering the holiday season, Noah's seventh birthday and I was in the middle of trying to protect Noah from the harm of a cell tower in our neighborhood.  Overwhelmed feels like an understatement.  But in any event I know there are some who have been wondering about how the most recent appeal for Noah's benefits went:

I keep thinking eventually I'm going to become numb to the wide array of emotions that I experience every time I have to fight for Noah.   But each time feels like the time before.  Every single appeals hearing I go into prepared for battle.  I spend usually no less than four to six hours drafting a Motion, compiling exhibits, making copies and drafting certificates of mailing and making sure I am way under that thirty day rule with time to spare.  Then I obtain a hearing date, calendar it, and watch that day slowly inch closer, knowing that the week I'll be be preparing the testimony that I'm about to give to a Judge.   Carefully re-reading my words a thousand times, so that I can do my best to represent the facts without emotionally falling apart at he seams.  And I know that I have no choice, because if I don't fight then Noah loses.  I am all he has.  I am all he will ever have.  There is no one else on this earth that would fight for him like I do.

I was particularly annoyed that Noah's CCB waited until one day before our scheduled hearing with the ALJ Court to submit their packet of evidence.  Doesn't give me a lot of time to prepare for anticipated testimony for cross-examination.  Their exhibits were really a version of mine copied, so I know I did half the work for them.  All they had to do was remember to label them numbers and not letters.  The State did name a witness and I had planned to object to as I had never heard this person's name before, and the nature of their testimony was not provided or disclosed.  However, that witness was a failure to appear.  Much like the State didn't appear at all for the last appeals hearing.  The tone of this appeals hearing was also much like the rest.  You know that the State is silently spitting nails your direction and you feel their dislike for you.  I'm sure speaking the truth can do that to most anyone.  I don't go into battle unless I know that I'm in the right. 

What makes his appeals hearing a bit different is there is now a pattern.  Noah is being really either continually denied or significantly delayed on any approvals.  Over the summer I was involved in several meetings, some with the State, advocacy groups, DME's - it was a busy summer for me.  And I only did it because I wanted to make things better for Noah and families walking in my footsteps.  I know that many of them want to fight and don't know where to begin, who know their children are being railroad and denied without proper reason.  I have the courage, the bravery, strength and understanding of the legal system to not feel intimidated.  And I know how appreciative other families are that I'm willing to stand up for everyone. 

But along with that can force you into greater consequence.  Being an advocate for your child or your community isn't easy.  And since the denials are really hitting Noah fast and furious I feel without a shadow of a doubt that Noah is suffering the consequences for his mother being outspoken enough to challenge the injustices. 

Noah's most recent appeals hearing was about his adaptive clothing denial.  For over four months Noah had an approval from the State for adapted clothing.  But the State wanted me to mail them a check - for an amount they wouldn't even disclose or be forth coming with me about for what they felt was my parental portion.  I explained that the nature of sending the State a check for services that they were supposed to be assisting my child with didn't at all feel right.  So I proposed they send us a gift card for an amount that they determined they'd fund.  While his CCB seemed agreeable, they would not simply allow me to use a gift card within the dollar limit but wanted me to make purchases beyond he gift card amount for what they felt our parental financial responsibility was - again an amount they refused to disclose to us.  When I again sought clarification and was growing frustrated in their lack of communication they offered to personally come to my house with the State's credit card - force me to order whatever amount they thought I should owe and they'd pay a portion - again without telling me how much that would be.  Did the state think I should be pay $100?  $200?  $500?  How much?  No one would say.  They danced around my very direct question for four months.  So I decided I would slide the issue into a meeting I had coordinated with the State.  I had several agenda bulletins - some of which weren't even my issues but issues that other families were currently experiencing and I was going to bat for them.  And while at the meeting I certainly took the opportunity to also discuss my ongoing problems with Noah's adaptive clothing approval.  The State representative again confirmed that Noah's adaptive clothing request was approved.  While at the meeting I specifically asked the State representative if our meeting would have any impact or repercussions on Noah's benefits, she indicated it would not.  You always run the risk when you advocate that you will unintentionally ruffle feathers, and even though my personality and my approach is non-aggressive and my tone and presence remains courteous, professional and kind. The content of the discussion can unintentionally cause automatic tension - even when you don't intend it to.

Shortly after this meeting with the State came back saying that they were offering me a 50/50 financial proposal.  I pay 50 percent and they'll pay 50 percent of Noah's adaptive clothing up to $600.  Which means we'd have to match $600 yearly out of pocket for Noah's clothing when annually we were used to paying roughly $82, because I am forced to shop at Walmart and Target at best due to the financial strain as a result of the out of pocket costs associated with parenting a child that is severely disabled.  I pointed out to the State that I had gained knowledge that other parents who were utilizing the same adaptive clothing category did not have a 50/50 percent assigned and in fact the State picked up the entire tab, and didn't assign any financial responsibility to families.  Obviously, me pointing out that Noah's case was being handled differently and unfairly hit a nerve and instantly our four month un-clarified approval became a denial overnight. 

"You are correct in your assessment that there is 'nothing in any literature that outlines this 50/50 percent guideline that you've just determined.' Because there are no guidelines in the rule the decision mst be to approve or deny.   After careful reconsideration of your request for clothing to be purchased through the Home Community Based Services-Waiver-Specialized Equipement Supplies, the request is denied."  An 803 will issue which "will give you your appeals rights."

I have a wide range of emotions.  Sometimes I'm boiling mad that I have to fight harder for Noah than most parents in my position do, other times I'm heavy with sadness, feeling like the weight of the world is on my shoulders, that feeling like you know people are counting on you to go the distance - not wanting to let Noah down - not wanting to let anyone down.   Even after just having finished the hearing just a few days ago, I feel heaviness for what I know I cannot change - especially on my own, with feeling like I invested so much time away from Noah and my family to make sure that he's provided with services that are due to him.    That feeling of being torn into a million piece and and pulled in a thousand different directions.   At the holiday season no less.  A time when people are signing Christmas carols and I'm trying as hard as I can to reverse denials for my little boy at Court hearings.   Someone needs to Spike My eggnog and sprinkle me with some holiday cheer.  I'm just doing my best to hold my head high and keep going. 

This appeals was a messy one - because I had an approval for so long and then a blatant denial which was an obvious abuse of power.  The State and Noah's CCB still annoyed from the last appeals hearing that I succeed at and they still haven't complied with an Order from October 26, 2015 in which they court reversed the denial and ordered his CCB to fund and purchase disposable pillowcases for his anti-suffocation pillow.  They also still haven't ordered two life jacket vests needed for warm water therapy that was approved October 20th.  Here we are almost at the end of the year.  And still not ordered, much less received.  What can I really do about it?  At this point in time someone with more power than I have would have to step in and fix it and I don't even know who that person would be.

**Update since this blog was initially written:

2 hours after the hearing on December 16, 2015 Noah's CCB notified me via email that they were finally complying with the Court order from October 26, 2015 and ordering Noah's disposable pillowcases.  Noah received his life jackets the second week in January.

I've requested to access Emergency funding; our primary hope is that they will fund Noah a T-Max shower chair that retails for over $3,500, a decision has not yet been made but all paperwork has been submitted for consideration.  They initially said they would approve the UV light filter for Noah (which would kill germs in our home and purify he air for him) they rejected it since the T-Max is costly.   So at some point I likely will have to put in a request for the UV light filter through his CES waiver and not Emergency Funding, which likely will face a denial and I'd have to appeal yet again.  This endless cycle of appeals.

I've submitted paperwork for a home modification request and a new Vitamix because Noah's current one is trying to bite the dust on us and is no longer blending his food well.  Both of those requests will be considered February 2, 2016.  Although the home modification then likely will be submitted to the State for further consideration because the estimates exceed what his CCB can approve on their own and will require additional approval.  The home modification is needed for safety concerns, health and well-being concerns with Noah in relation to being on the floor, and his equipment like his power wheelchair, gait trainers, standers etc being accessible and utilized on a hard flooring surface. 

There are other things Noah needs that they haven't responded to (i.e. PPod adaptive chair seating accessories, oral swabs, saline swabs etc.)  they haven't decided if they will allow me to ask for any of those things.  Which is truly frustrating.  It's this "mother may I" system.  Which makes it tremendously difficult to not only access help for your child that is supposed to be there, but obtain it within a reasonable amount of time - not 9-12 months later or even after they force your hand into an appeal. 

As of today I have not heard back from the ALJ on the decision regarding Noah's adaptive clothing hearing.  I anticipate I will likely receive a written ruling within the next two weeks.

February 1, 2016 the Home Modification Cap gets approval to increase to $14,000 from $10,000 - Although from what I can tell families are not being informed about the increase.

"Strength grows in the moments when you think you can't go on but you keep going anyway." 


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

Wednesday, January 13, 2016

Electromagnetic Sensitivity with a Special Needs Child: The Verizon Cell Tower Fight

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Always a mountain a climb in my life all because I'm now the parent to a severely disabled child.  These things are hard, no matter what the issue is, it's hard.  The most painful part is the feeling that your soul is literally screaming on the inside, but no one can hear it, no one can see it, no one can even sense it.  The entire world is blind to it.  It's so easy to turn the other cheek and to think, "better you than me," "or we feel bad for you, but it not our kid, so really it's no big deal."  we feel for you, but..."  or even the artificial concern.  And believe me it's so easy to sniff out the artificial caring.   

I don't ever get a break, or a time out, or the freedom to really tell people how they make often make me feel.  That darn ego that I wish people didn't have, that forces people to think I before we, and me before you. The world is filled with opinions, statements and thoughts - and people carelessly throw them around like it's really no big deal at your expense.  I wish I could gift everyone with one day in my shoes.  And I say gift because Noah is the ultimate gift, and because that would be the only way to give another human being, no matter what relationship they had with you, a profound understanding of your life's journey and the real and present struggle that exists with raising a child with special needs. 

Likewise, it's certainly hard to get those who are unfamiliar with a child who has special needs to understand the gravity of what you deal with, how truly "un-normal" our lives are.   I think I've tried to explain Noah's severe sensory processing disorder in a handful of ways in the last few weeks and no matter how hard I try, it doesn't work.  It's like trying to talk to someone who's never seen the sky and that person only being told what it looks like.  They'll never really know because they haven't experienced or seen the sky for themselves. 

And then cognitive dissonance comes into play. If you've never heard of the term before, it is the psychological theory that causes people to dig in their heels and hold on to their beliefs and opinions even when faced with overwhelming evidence to the contrary.  For example it's easy for someone to say for instance "Local government allows citizens to be closer to decisions and to have direct and timely input into decisions effecting their quality of life, their individual rights and their property values."  Yet even with evidence demonstrating facts for all those three basic human right and values, it's easier to double-down on an opinion in light of evidence to the contrary.  The end result means no one ever has to recant or reconsider their position.  And if they are in a position of power they can always be right, no matter what.  They don't need facts nor evidence. 

Cognitive dissonance also puts people on the defensive.  That is something that I think many special needs parents experience quite frequently.  As such, it really decreases the amount of real support that a special needs family really feels it has, and further contributes to the realization that we don't mean as much to others as we wish we did.  And in the end only confirms what we were already feeling... we are alone, so very alone in all this.

I've spent the last three weeks trying to advocate for my neighborhood and for Noah.  Pounding the pavement so to speak and keeping my heart, ears and mind open so that I could absorb other homeowner concerns and incorporate them with mine for Noah. 

Ironically when I moved to this house I thought it was a really wonderful thing that I had a church across the street and a church on the side of me.  Like we were nestled in God's space.  Two months after we moved in the church closest to the city's cemetery was torn down due to soil issues.  I'd still walk the cemetery with Noah and walk the path to the park, and I often would ask God personal questions that I only wanted to share with him and no one else, and being so ever still to see if the wind would whisper me the answers I am always seeking.

Then last July I got a notice on my door that changed it all.  The closest church to me decided they were going to enter into a contract to allow Verizon Wireless to build a 52 foot bell tower on their property, giving the church $2,000 a month to lease their land to start, (and I say that because now any other cell company can add to the tower and give the Church even more money monthly). Homeowners fought it, I fought it and we had a 4-0 victory vote with Planning and Zoning.  We thought that our collective voices had prevailed, until City Council voted to override planning and zoning and approve it 5 to 4.  The last three weeks I've dedicated my time and efforts to presenting information to City Council that were all of homeowner's complaints and concerns, even submitting letters from Noah's treating providers to document the impact that a cell tower will have on his life.  Because of the frequencies that Noah's medical equipment runs on a tower that is 300 feet to the closest home very well cause static, and influence the ability to properly hear and see or determine what is going on with him.  And yes frequencies can interfere with each other.   Electric fences can have an impact on cell tower, pacemakers are influenced by EMF (which is referred to as EMI).  It's real and can be substantiated even though there are many who believe that isn't the case.  I suppose it's very much like that cliche saying:  "Ignorance is bliss."  And then I have Noah's sensory gag and vomit reflex that makes him at risk for aspiration.  Noah's triggers are to sounds, and even vibrations - among a host of lots of other things.  When you know your child well enough you know what is going to cause a problem.   I even reached out to the Church and their silence towards me has made my heart even heavier.  Promises they'd be in touch with me turned into literally the church offering me nothing but a cold shoulder.  Although being shunned by a Church over a child with a disability isn't at all uncommon, especially when you don't want to compromise a desire for money which rules all else in the world we live in - even in places of worship.  An article about this church's efforts couldn't have said it better.  It's a "Non-Demominational Cash Flowing Epiphany."

I wasn't the only homeowner in the subdivision to have a complaint, there were soil and water table concerns - because the church was torn down in 2013 because of a soil issue, now the church meets in a gym, and just in the last few days, because of his issue slapped a Church sign on the gym.  The community was starting to point fingers that we were putting a bell tower on property where a church doesn't even exist.   There were horned owl concerns that are a protected migratory bird, data of cell tower fire and collapse, the liability that the Church is assuming, no testing had been done, no neutral third party agency consulted and property values decreasing, and asthetics concerns of the tower.  City council tried to convince me and others we needed this for 911 safety, although after I pointed out that the Verizon representative herself admitted this was a preemptive request and that I being ironically a Verizon customer myself have experienced no difficulties in any of my calls even to 911, they changed their tune and then ironically it became about our community needing increased Wi-Fi service at this last hearing.  I'd offer the fact that we lack a problem with either.

And the kicker I suppose is a homeowner asked about existing conflicts of interest and inquired of City Council members who were either members of the church or a Verizon customer.  Some chose not to answer because they didn't have to, while some did indicating they did not have a conflict.  Yet the Mayor admitted he had been a member, but honestly I suspected as such when he mentioned it was his late wife's desire to see a steeple rebuilt there at the last hearing.  The Mayor isn't a part of the voting process unless there would be a tie.  But I would have felt better if there wasn't a church relationship of any kind at all with any of City Council so that all of us could have that reassurance without a shadow of a doubt that a conflict didn't exist.  He after all feels like the ring master in essence of these meetings.  And it's not uncommon for a body of peers to have an allegiance to vote alongside their friends.  There wasn't anything that we could have presented to City Council - none of it would have made a difference.  Their intent was always to approve this tower no matter what Planning and Zoning decided.  There was way too much they turned the other cheek to - Including ADA law that supports and recognizes electromagnetic sensitivity.  Having over a decade of courtroom experience it's easy to recognize when some is leading questions to pull out the responses you want to hear to justify your cause.

The end result - not a reversal of vote, not even a reversal to consider additional information or time - but a "study session."  What is a study session you might ask?  It's just a time when City Council members discuss the issues without the public being able to comment - although the public can attend.  What becomes of them?  Nothing they are non-decision bearing.   No formal action may be taken by the Council at a study session other than to direct staff to proceed in a certain manner and to bring items back to a regular session for action.   If I had to place bets I'd say that this issue will ever be brought back for a regular session or for any action.  Although the Mayor made a statement that Verizon could only be "asked" to delay but were not obligated to do so, which was likely leading Verizon to the suggestion that they should not only go ahead but to move quickly.  Although the ground is hard from the winter temperatures, I have no doubts that they'll probably be digging in the next few weeks.

I still had hope and faith all homeowners would have an impact - even after one city council member said he didn't want to play whack-a-mole, and was firm on his standing.  Realistically if we assume that attitude then not only are we wasting tax dollars on Planning and Zoning application reviews but we're wasting City Council's time too.  If the standard is let's approve all tower requests that come our way, then why have a process?  There is such a thing as the Federal Cell Tower roll out which is happening in Northern California; Houston, Texas; Parts of Colorado; New Jersey; and New Mexico ... just think this could be happening to you too super soon!  Because we all should desire to live 500 feet or less from a tower - camouflaged as a tree, a church bell tower, or even a cactus. 

I did everything I could, so did other homeowners.  We worked hard to have our voices heard.  We really did.  Super hard.  I have some great neighbors.  But now soon I'll have a cell phone tower as a neighbor too.  Along the way I met some incredible people I wouldn't have met otherwise and connected with those I felt that really genuinely wanted to help me, and I owe them the world of thanks for their kindness and sincerity.  Katie Singer, who wrote an informative book that I think everyone should read called Electronic Silent Spring and his been gracious and kind in her correspondence, Deb Carney, an environmental attorney that was warm and easy to talk to, who I'm so blessed accepted my call when I learned of the cell tower approval. William Collinge, Ph.D, who provided me with amazing expert reports, and words of wisdom, to all the reporters and press who took the time to cover the story,  my neighbors many of whom I may have never been able to meet otherwise. The investment of all of their time to not only try to help me, but themselves as well, means more than I could ever express.  And I am so appreciative of their efforts and support. 

Katie Singer reminded me when one door closes... another opens.   I have no idea what that door would be.  That new door not only feels locked but locked with hundreds of locks with missing keys.  Where do any of us go from here? I can't move although that feels like the first thing I want to do - how far can I run away from all of it?  But I can't my hands are tied more than I could ever tell anyone.  I am stuck.  In fact I am stranded.  One of City Council members suggested the neighborhood find a neighbor with money to buy out the church if we didn't like it, perhaps I should have countered the suggestion that City Council find a way to relocate our home, but it's not in my personality to be snide.  The fact that the Church was here before the homeowner subdivision and that the Church trumps us was also a hard pill to swallow.  I was here before the cell tower, but that doesn't mean anything.   

Of course this has caused an me to develop a tremendous distrust that was already growing as time went along, and now the suggestion is I allow Verizon into my home to attempt to minimize interference that this will cause to Noah.  Ironic isn't it that a business who can get up and give testimony that this is all okay and safe would even engage in a conversation to suggest otherwise? Even if I were to entertain this idea, it would do absolutely nothing for his sensory issues.  My government elected officials have successfully made me and Noah even stronger prisoners of our own home.

And yet I'm left with how I am truly feeling which was included in my speech to City Council:

"A church bell tower with a cross on top is an aesthetic symbol in our civilization of good will, compassion, caring about humanity, caring about the most vulnerable among us, and spiritual values. Instead this church, which already gets special tax and zoning considerations from the city, is proposing to change the meaning of this revered symbol into an obscene symbol of greed and disregard of human and spiritual values—the opposite of what it is supposed to symbolize. Aesthetics, as you know, is a valid criterion for denial according to the FCC regulations.

This will become a SYMBOL of corporate greed and rejection of spiritual values in our neighborhood every day, and all homeowners and residents of Broomfield County will be constantly reminded of the failure of our City government to put our human values first."

Introducing my new daily reminder of just how much our voices mean: 
These are the links to some of the news media stories and publications:

City County Hearing: Here


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

Wednesday, December 30, 2015

Noah's 7th Birthday & Christmas 2015

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Noah had a really wonderful birthday.  He certainly made sure we realized it was his day as he required extra attention all day long.  There are some days when Noah is content playing by himself and gets annoyed when you pay him too much attention and then there are days when he's exceptionally needy and wants you to change out his DVD's every 1/2 hour, hold him, rock him, wheel him around, play games with him, and not leave his side.  His birthday was one of those clingy days.  And I'm glad his birthday was a day when he wanted extra love.

His Mickey Mouse themed day was sweet and he adored his birthday decorated cheesecake - a yearly tradition since Noah can easily consume cheesecake and is his all time favorite treat.  We sang Happy Birthday twice, because once for Noah is never enough.  He has such awareness now at age seven.  His realization of wanting to blow out candles but can't.  The urge to hold and touch a birthday cake... but can't because his waving hands will knock it to the floor... one of us lightly holding down his hands so he can do his best to blow out a candle, or bring the cake close enough for him to hold it.   The quest as parents of course to make a birthday as normal as any other child would be able to experience.

This was also Noah's first year in his GoTo Seat Floor Sitter by Firefly.  He's always had to sit in someone's lap to open gifts or be with us as a family on the floor.  But this year, Noah got the pleasure of unwrapping his own presents sitting on the floor and not having to be cradled in someone's lap.  It was a new experience both for him and for us and he really enjoyed it.  In fact, so much so that he was a bit upset when we couldn't keep him supplied in gifts to unwrap.   It made the world of difference for how he enjoyed his birthday and Christmas.  It is one of those products that you think how did I my child ever live without all these years?

Noah also was gifted with the cutest little cookies for his 7th birthday from Mia's Cookies.  We had the pleasure of meeting Allie, the owner, at the Birdies for Butterflies fundraising event earlier this fall.  She makes the very best cookies and it was so special that she thought of Noah and helped us celebrate his special day.  Airplanes happen to be one of Noah's favorite things, she even sent some Minions which Noah and Luke absolutely adored.  It's the littlest things that build the biggest memories.

Christmas came in a flash. I think both boys had a memorable Christmas. We genuinely owe thanks to countless people for providing our children with gifts under the tree.  Something we couldn't have done on our own without the loving support of our community and foundations.  Christmas blessings that made their holiday something I know they will cherish for years to come.  Noah has several favorites.  Of course the Minion Guitar that Santa brought that Luke insisted that his brother wanted; Beat Bo, Fisher Price Beat Lights, A Musical Mat, Piano Touch Pad and an interactive Bear that talks to him, a dolphin light and sensory bob frog.

This year was the year of the dinosaurs and superheros for Luke.  It's interesting to watch a typical child like Luke transition in toy interest, when Noah's very much stuck at age seven in a toy category that is interactive or deals with lights and sounds.  Cognitively Noah understands and he still has an interest in dinosaurs and superheros just like his little brother, but he has a hard time playing with them and can only bat them around on the floor or look at them when Luke temporarily abandons them on the floor within his reach.   I do wish though that we had the ability to gift both boys with age appropriate gifts.  Noah's to a large degree sometimes still feels like we lean on the baby side of toys.  It's not because his brain is developmentally in a baby stage - but because his body physically is.  There are so many things I'd love to make better for children with special needs - one of them being a growing toy line that is priced within a any parent's reach that caters to children like Noah who have physical limitations but the mind of a typical aged child so they aren't stuck in the baby toy isles their entire childhood.  

Noah ate a ton of food.  So much I still am amazed where is tiny little stomach put it all.  It was likely two adult servings pureed and he scrapped that bowl clean - and had desert.  It was a mixture of ham, heaping spoon of mashed potatoes, demi glaze, buttered carrots, 2 dinner rolls, 3 garlic and butter roasted brussels sprouts and 2 deviled eggs pureed together.  You might think wow all together how can that be good?  But it did taste wonderful as I always do a taste test before serving it to him.  And it was a really yummy puree.   People might not realize the efforts that go into making pureed meal combinations.  Things you might think might not be paired well can sometimes wind up making the best purees.  He even topped off dinner with Christmas English Trifle and Chocolate Cherry Pudding Pie.

Chris did he honors this year of taking down the Christmas tree and decorations, sparing me from all the work and maybe the flooding of emotions that comes with the holiday season.  He worked incredibly hard delicately wrapping each ornament in tissue paper to protect them and boxing it all up for me.   It offered me much needed relief.  Something so small was so big and I'm so appreciative of his efforts and help, it was like an elf came a long and just scooped it all up and made it disappear.  Everything still feels a bit out of order, but that is likely because my mind is working on overdrive.  While I think of marching into the new year, my biggest wish is to have less stress.  I'm not sure that's a realistic expectation when you're a special needs parent.  It's something every parent longs for, but by the nature of the battles we fight, the challenges we face to help our children live the best lives they can, to be their voice, and to make sure we're on top of every hiccup to make sure that all is okay - it's like having the weight of the world on your shoulders at all times.

But I'm trying to hold promise in 2016 that through the power of positive intention and asking for God to be my guide, I'll be accomplish amazing things for Noah and the special needs community.


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

Wednesday, December 23, 2015

Leaving Behind Six

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Perhaps I made the mistake of discussing Noah's birthday plans with him the right before bedtime.  Even though Noah is non-verbal and I'm having a one-sided conversation I often underestimate how much of what I'm saying he's paying attention to at any given time.  Casually mentioning his Mickey Mouse cheesecake would be arriving, and how we'd be decorating and having Mickey Mouse paper plates and napkins, and how maybe we'd order in food just for his special day seemed to have cost me much needed sleeping hours.  Noah was up until 1am before deciding to close his eyes to get just a few winks of sleep.  He'd go in and out of being whining to get our attention so we'd rush in to turn him over or see what was wrong, to celebrating with happy squeals as soon as we entered his room.  I suppose he thought we should get his party started last night.  Of course Noah's need to be disruptive in the night also keeps his little brother up, who is annoyed that he shares a room next to noisy Noah and then Luke starts his own late night drama feeding off of Noah's.  

Next year I think I'll just surprise Noah instead.  And not talk about all the fun stuff to look forward to the next day.  I'm not even sure I want to tell him what day Christmas Eve is - Santa will be doing circles above our house half the night because Noah will be up.

My attention and focus has been all over the board this month.  Per typical December style for me, it hasn't been easy.  An appeals hearing for another Medicaid denial, there is always a court battle I march fearlessly into, meetings, hearings, research and time invested in trying to protect Noah from a cell phone tower that was voted in by City Council that will be detrimental to running interference with his medical devices and put him at life-threatening health risk with his sensory processing disorder.  There are of course I think a host of other problems and neighborhood concerns that haven't been adequately addressed or considered with neighborhood and homeowner impact.  Yet at the heart of it is Noah for me, and I'm feeling helpless and beside myself.   Then there is Christmas, the heavy weight of the holidays.  And trust me I've done my best to pour myself a cup of eggnog and sprinkle myself with holiday cheer, but something still feels like something is missing.  I'm just simply muddling through it.  I've even asked God to send me a little relief and a hand up.  Even though I know it's in his timing, not mine.

Situations around me feel beyond my control.  A feeling that is not at all helpful in the emotional baggage that I still carry with me seven years later.   Although I do give some thought to Luke's birth on his birthday its not to the extent that I do it with Noah, and with Noah there's such trauma there that it's like picking at an open wound and making it bleed.  Does healing come in he number of years?  No.  And I'd certainly have a bone to pick with the person who says time heals all wounds.  I rather share the same sediments as Rose Kennedy, "It has been said, 'time heals all wounds.' I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone."

Yet, the blessing shines bright which is Noah's life.  Seven years later for a child expected to die after being removed from life support, is bright, beautiful, healthy, thriving and most of all happy.  Seven beautiful, bittersweet, incredible years with this amazing human being.   He is a gift to all those who know about him, love and care about him.  He often feels like my guide to something much bigger than we realize here on earth.   Like he's the key to all of it. 

I decorated the kitchen with items my mom found at the dollar store for him, and I know he'll beam as soon as he wakes up... which could be hours from now since he partied into the night.  I sit here peacefully listening to the tick tock of a clock that hangs on our wall feeling like time is standing still but yet moving so fast at the same time.  I hope he has the best seventh birthday I can give him.


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

Monday, December 14, 2015

The Love in Santa's Hug

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Santa was always incredible in my childhood; but has been beyond exceptional in the childhood of my children.  It takes a really special person to be able to see past Noah's challenges, to love him anyway - to accept him anyway.  Santa brings this beautiful magic and Christmas spirit into Noah's life during the holiday season.   Noah has always embraced Christmas as his favorite time of year.  The time of year when the impossible always feels like it can become possible.  Where dreams become real and the magic feels endless.  Because of Noah's extreme sensory challenges and the need to keep him away from overcrowded public places that can breed a host of germs that could be a health threat for Noah, we always try to find ways to invite Santa into our home or visit him by personal appointment. 

Although I didn't attend my high school reunion this year, I still managed to reconnect with friends that were a part of my life years ago.   A high school friend named Molly had mentioned her father (who was our math high school teacher), was now Santa.  I'd like to tell you that somehow this was all chance.  But it's not.  There are so many things in life that we want to chalk up to coincidence but the ways in which we connect and situations that come to be are orchestrated by something much bigger than ourselves.  Molly, growing up I know had her own challenges.  She was born with a cleft lip and pallet, but that was never the first thing I seen.  I always thought Molly was very pretty.  Even to this day in pictures she's incredibly beautiful and doesn't at all appear to be aging! I imagine her challenges made her spirit as beautiful as her exterior.  And it felt really wonderful to reconnect with her.  She probably doesn't even know how much I cared for her all these years later. 

I honestly thought maybe it would be a long shot knowing how busy Santa is this time of year with his calendar I asked her if her dad would be willing to do a home visit for Noah and Luke.  Without hesitation she coordinated finding a time that her dad could be available to visit Noah.  

Math was never my strongest subject.  I was good at a lot of things, but math was never one of them.  And to this day I often find myself counting on my fingers trying to make sure no one notices and guessing at approximate percentages off when shopping sales.  Although I managed to pull off a great grade in his class because of my dedication to remain in the running for Valedictorian, I did struggle and had to work twice as hard as many of my peers did in order to pass tests.   I rather envisioned that Santa would remember I wasn't his strongest math student and would wonder how I was getting along with only being able to minimally add and subtract. 

Years later I don't think it mattered to Santa about math not being my best subject.  His eyes gleamed and his smile was big and bright as he seen the little boy he came to see laying on the floor when he arrived through our door.   We thought that Noah and Luke would both love to sit on Santa's lap together.  Noah gave it a great college try, but in under a minute on Santa's lap his signature sensory gag reflex presented itself.  Possibly an indication of being overly excited, or perhaps he didn't want to share Santa's lap with his little brother.  Some of Noah's sensory triggers are still a mystery to us.  

Santa didn't bat an eye, nor did he take it to heart.   He looked at Noah so lovingly and with tremendous understanding and decided that he'd simply join Noah on the floor where Noah was most comfortable.   Santa brought two books with him and a bag full of miniature candy canes.   He opened up his first book The Night Before Christmas and started to read to the boys.  Luke on one side, and Noah sitting on his daddy's lap on the other.   Noah's face lit up and he began to smile, laugh and squeal with delight.  Santa carefully showed Luke how to unwrap his mini candy cane and still have it partially in the wrapper so he didn't get his tiny fingers sticky.   Luke following directions from Santa and Noah giggling with every Ho, Ho, Ho. 

Magic filled our living room.  And somehow I felt like I could hear every angel in existence singing a sweet Christmas carol right into my depths of my heart and soul.   Santa finished his first book and then moved onto Olive, The Other Reindeer.  When you're watching this sweet interaction for just a brief moment in time all feels right with the world.  In all the mess of and complications the holiday season brings, there was this blissful moment with my boys and Santa huddled on the floor together.

Santa was so very patient and had explained that he had been to Children's Hospital earlier in the day where he was in a little room and was able to talk to sick children via a monitor in their rooms.  So he understood fully the gravity of what we were dealing with.  Children as often medically fragile as butterflies.

Luke is a bit shy and a tad cautious of everyone... including Santa.  Although he did back into a hug and told Santa that Noah would really like a Minion with a Guitar, and that he wants a Tonka Police Car, Polar Book and Five Avengers which he whispered as if it were a secret.  We're not quite sure how Luke knows Noah's wishlist, but each year he tells us what Noah wants.  I think it's brotherly telepathy.  Which is good because Luke sometimes knows what Noah needs or wants before I do.  Luke is a very serious child, partially I think because of having an older brother that has a severe disability.  He doesn't often kid around or joke and does not yet know how to lie.  His innocence an equal match to Noah. 

Luke was really inquisitive of Santa as to where his reindeer were.  Santa explained that his reindeer only fly once a year and that he was driving his Subaru until then. Luke and Noah seemed to like that clarification. Santa's goodbye hug filled with an abundance of unspoken words as I told him how thankful I was for his visit.  His simple, yet tender and warm reply was "I know."

Luke watched Santa drive away at the window, and Noah beamed with happiness. Maybe our Christmas will be really small this year, but it's so big in so many other ways.  Christmas is not for dwelling on all that you've lost but for counting the blessings for what you still have.  Remember to always keep a warm and open heart and spread all the joy you can all around you.


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

Tuesday, December 8, 2015

A Special Needs Christmas Nightmare: The Elf on the Shelf

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Let's be honest.  My life has a enough chaos to it.  

The ever popular Elf on the Shelf that seems to have taken over Christmas traditions well after my childhood came to an end, fills social media sites, newsfeeds and holiday pictures swarm around that ever naughty elf.   And he's never up to any good.  He's a royal pain in the ass.  He's spraying mirrors with bleach, he's picking on the family dog, he's eaten all your favorite m&m's that you were rationing until Christmas.  I mean really could he be any more of a special needs parenting nightmare?

Unless he's going to sprout some compassion and real help - not just reporting back to Santa like the mini stuffed tattle tale that he is, or helping me get up a thousand times in the night to turn Noah in his sleep or check on his breathing, or help me spoon feed him during the day, or play with Luke when Noah needs my undivided attention, calling SSI to bark up their Christmas tree, or threaten not to send Medicaid a Christmas card unless they waive the most recent over payment - then he simply isn't invited and I'm not giving him a key to wreak havoc on our household.

Facing the facts are important.  It's all I can do to put up the Christmas tree weeks before Thanksgiving because Christmas is a sensory treat for Noah, think about how I'm going to afford even just one adapted toy for him which is five times the cost of a toy that we'd purchase for his little brother at any toy store, and contemplate making Christmas cookies, sending out Christmas cards, and finding some sort of inner Fa-la-la-la.   The last thing I want to be doing is coordinating and reprimanding an overly precocious elf.  It's just not on my special needs parenting agenda.

Let's not forget the most important part of Elf on the Shelf.  He's creepy.  Even dressed up now in the Claus Courture with Elf Pets makes that elf higher maintenance than my child with special needs.  My child would take one look at him and guaranteed it would give him a sensory gag reflex.

Hats off to the parents that find him fun, weird and entertaining.  But this special needs parent is going to stick to the old school way and just let Santa handle the naughty and nice list without his little mischievous Elf on the Shelf.


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

Tuesday, December 1, 2015

Nessie & The Miracle Mat

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When we ordered Noah's first Nessie along with his PPod from Specialised Orthotic Services, I under estimated how big Noah was and ordered him a small one.  While it never fit Noah super well I did find ways to make good use of it, for as long as I could.  When you have a child like Noah positioning of any kind is always helpful - even it if it's something that is a bit on the small side.  Two years later, Noah graduated from the small Nessie into a large!  

For those unfamiliar with what a Nessie is and does:

"Nessie provides a novel approach to positioning during therapy simplifying the practicalities around such activities for therapists, parents and carers. The established range of primary positions associated with physical play therapy can all be achieved using NESSIE. This can include ‘tummy time’, sitting, side sitting and side lying. NESSIE is easily transported around, so you can always have it available at any time. The covers are removable and washable. The unique contours of NESSIE allow safe secure positioning."

And along with it came the Miracle Mat.  A customized embroidered soft mat that reminds the both of us to never give up on miracles.  It might sound silly, but that mat holds a lot of powerful significance.  It was an unexpected personal touch that represents the continued miracles in Noah's life.  Physically, he continues to work hard in therapies, working on gaining head, neck and trunk support, trying to learn to brace himself to sit if only for mere seconds at a time, trying to weight bear and hold his legs steady and straight in an assisted standing position.  He never gives up, and he never grows tired of trying.  His perseverance is amazing.

Noah's new Nessie also has another great feature that his smaller one didn't have.  It has a removable EVA foam cover that is fantastic to have on the Nessie to protect it from Noah's occasional drooling when he's on his tummy.  Easy to wipe clean.  It is the same foam material that his SOS bath seat is made out of and it's really great material.  Not only is it comfortable but it's really durable.  The new Nessie is heavy, but incredibly sturdy.  There is no way that it would ever tip over or move. 

The first few times Noah used it he actually was able to go from his tummy and flip himself over into a semi-propped seated position.  It gave him just the support he needed in order for him to find a different way to position himself.  It also is fantastic for encouraging Noah to look up and lift his head to work on head and neck control, while still offering him a soft landing for when his head and arms need to take a break.

There isn't one single product that hasn't just been absolutely incredible that we use for Noah from SOS.  In fact, I continue to hope and pray more than I can ever tell you that their merge with Drive Medical will eventually result in Specialised Orthotic Service's entire line being available for USA purchase and insurance funding.  I still dream of being able to get Noah the T-Max Shower/Toilet chair and the MSI Seating  System and Sleep Pod.  Right now the only products available for US sale are the P Pod, Nessie, Equipoise, Bath Seat and our Toilet/shower Seating System. Although, I don't think any of them carry an insurance code as of yet, so it's out of pocket costs.  It's my hope that Noah's Medicaid waiver will assist me in the new year with the roller base for Noah's PPod so we can roll him around the house without having to take him out of it to go room to room.

SOS also has great customer service and are really wonderful to work with.  I've enjoyed all my contact with them.  They are so prompt in answering my questions and helping guide me on making the best fit choices for Noah.  I appreciate their help, kindness and love for children like Noah, immensely.


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