Tuesday, June 30, 2015

Always A New Storm on the Horizon

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


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

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

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


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

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

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

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

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

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

Love,



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

Friday, June 26, 2015

The Positive Footrprint

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My twentieth high school reunion is in one month.   I itched to get out of high school, an educational institution that I felt held me back from all the amazing things that I was destined to do in life.  I wanted to be set free to pursue them.  Chase them, catch them with a net and feel that incredible sense of accomplishment.  Funny yearbook predictions; most likely to succeed, most liberal, most conservative, most artistic.  You didn't find my picture next to any of them.  Which in hindsight was probably accurate.  After all is there is no prediction for most likely to grow up and have a severely disabled child, altering any dreams or goals you ever once thought of having.  After some consideration, I decided that introducing Noah to people I went to high school with at a family event likely wouldn't be his cup of tea.  So, I'm skipping it.  Although, sometimes I do have a tad bit of curiosity of how those I once knew would think of the hand that life dealt me.  I'm sure stacked up against "most likely to succeed," one just can't compete.   

Since Noah's birth though I've found a way of growing new dreams and goals for him and for others.  I've realized that my destiny has become something so much greater than I ever imagined it to be.  I'm satisfied and content knowing that I'm making a difference in Noah's life and in the lives of others.   I no longer grieve the dreams that died and that I was forced to bury.  New ones have sprouted in their place.  I've learned great lessons.  I've been to places in my life others could never imagine.  Deep, dark, sad places of great despair and indescribable pain, but I've also risen to experience profound joy and understanding of what really matters while we have this short time here in life.  I've found my footing and also experienced the blessing of a child's life that most could never grasp or understand with parenting a child that relies upon you for complete care.   I don't want to squander my time.  I want to leave my positive footprint. 



Some who meet me for the first time I think are pleasantly surprised that after knowing our story  - all of it... that I still find a way to smile, and that I haven't rolled over and just died from all the continual hardship and complications that continue to come my way.  I am rolling with the punches and finding ways of punching back.   Fighting fair with the truth, and always pursuing justice, equality and fairness.   Sure I lose my fair share of special needs battles, but I have a decent cry and pick myself up again and keep marching forward.  Because I know that positive footprint is incredibly important.  And that Noah depends on me, just like others have grown to depend upon me for advice, comfort and understanding.  A safe umbrella gathering the walking wounded beneath my own broken wings vowing to do my personal best to do my part to make things better for the disabled community. 

I'm not quite sure to the extent my footprint will look yet, but I know my efforts are leading me there.  Maybe it's going to be in the form of advocating for others and helping them fight an incredibly challenging and at time unfair system.  That I'll help be the driving force behind big changes that will benefit the disabled community.  Creating new laws that are going to make life easier for the disabled community.  Maybe it will be in helping cultivate ideas and products that will make all the difference to children and families, maybe it will be in just touching a handful of lives through writing blogs about our own special needs journey.  Or something simple like touching the life of others at the holidays..  or if I'm really lucky maybe all of it.

I am sure not lacking in challenging experiences to help me gain knowledge in areas I never wanted.   My current battles of trying to get the State to realize that asking me for a check to pay for services that they are supposed to be providing to my child is blowing my mind with their justification for why they feel I need to bring a check to the table for my child's sensory clothing, and an equipment vendor who thinks it is a brilliant idea to propose that fixing a broken wheelchair by leaving a child without one for an unspecified amount of time (without any kind of temporary replacement) isn't a realistic proposal.   Just drop it off they say.  And that means that he lays draped across my legs while we drive home all considering that his transit ready wheelchair is his ONLY means of transportation?  And then I carry him through Target, and the grocery store and to and from all therapies?   Makes you wonder how these people maintain jobs that require them assisting the disabled community.   They simply have no clue.  I wish I could school them.  But I've come to realize that I think the light bulb would only go off if you have a child like Noah.  There's no other way you'd really understand how unrealistic some of these things are unless you're living it.   In their minds it makes perfect sense, in my mind these proposals are an utter joke.  And SSI the icing on the cake because things have to happen in 3's... has denied both my appeal and my waiver request for the most recent overpayment request.  With what they feel is their "logical reasoning."

They apply three tests when they decide if you are at fault causing an overpayment.  The first is whether you made an incorrect statement or a statement in which you should have known was correct, the second is whether you failed to give us timely information which you knew or should have known was important, and third is whether you accepted payments which you either knew or could have been expected to know were incorrect.

Claimant is able to pay the overpayment back.  Therefore based on the facts we have, we cannot waive the collection of this overpayment.  Which means you must pay this money back.
It certainly makes no difference to them that I fax in monthly pay stubs and additionally send a hard copy in the mail certified so I have a signed signature as proof that they've received it timely (because that still let's them off the hook not to do proper calculations and then blame you for the reason they suck at math).  And assume that we all can pay it back even though we can prove that we can't.   Filling out appeals and waiver forms is really a true waste of time.  They've already made the determination you can't change their minds even when you shove the truth and facts under their noses.  They will forever and always be a flawless system, and there is nothing at all stopping them from coming after you at any given moment.  Because they can.  There is nothing stopping them.  You could shove all the proof in the world under their noses, indisputable proof that you are right and they are wrong.  Doesn't matter.  Lost cause.  And it's not just us, it's thousands of people.  You post about a SSI overpayments anywhere on social media and you're going to hear a multitude of some really tragic stories and circumstances.   If the government gives it to you - even if it's their ERROR they screwed up they shouldn't be able to come back and ever say you have to repay it.  Until we FORCE them to be accurate and held accountable for the job they are doing then this mess is going to go on until the end of time.   It's rarely the fault of a special needs family as we're so fearful of overpayments we do everything in our power to report wages immediately.  

I still have hopes that I can build a bridge however, and get them to cross that bridge with me. (I know they say dreamers are crazy).  And maybe I am.  Maybe there is no way to change things for the better, but I'm sure going to try.  Then I wake up each day and look at my little boy on the floor and say until my dying breath I fought for you.   There has to be a way to get these government agencies on board with making things better for struggling special needs families.  I'm not going to give up on that hope anyway.  I've coordinated a meeting with the State in July.  I'm praying for change.  I'm gathering moms and dads, to pack along with me.  Many of whom I've never met, with the hope of demonstrating that there are many families experiencing difficulties with utilizing government assistance and accessing resources that were designed to help their child.... because in the end it's all about positive footprints.

Love,



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

Sunday, June 21, 2015

Father's Day 2015: The Gift of Inspiration

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The sacrifices of Special Needs Dad isn’t always seen. It’s the stillness of a stoic heart as he sits in an armchair listening to each breath his child takes on a baby monitor. He encompasses courage that camouflages fear, uncertainty, and exhaustion. Forced to re-design hopes and dreams that once existed and transforming them into new dreams for his child. A Special Needs Father’s actions become a language of love. Protection and devotion beyond all measure. He stands as tall as the strongest tree facing the worst windstorm, allowing all family members to seek shelter in his strong branches. Walking with undiminished integrity. He sees no burdens in specialized care, or understanding that he may be diapering his child into adult years, or communicating only through smiles and subtle verbal sounds.

 
Noah and DaddyA father that takes on understanding that his child is perfect, unique and incredible – a life’s blessing even when society may only see the imperfections of a child that they cannot label “normal” or “typical.” Faithfulness, hope and devotion running through his veins like the fluid keeping him on his feet. Incredible beyond all measure, with a greatness that often is under-appreciated and goes quietly unnoticed like the calm of gentle ripples on a river. A father who is so grateful for the blessing and gift of his child’s life he celebrates each moment he has. A special bond between a father a child with special needs – surviving and thriving together.

He puts all needs before his own – a commitment and expression of great love. A sturdy frame able to carry a child unable to walk, patience to embrace a child that needed endless cuddles to soothe and understanding when proper distance and space was necessary to assist with sensory challenges are all qualities that come naturally and without a given thought. A father that has endless endurance to push heavy wheelchairs up hills, and down mountainsides so his child can enjoy a gentle breeze and feel the whispers of nature. Purposeful intention to create adventure and playful spirit into the life of his child with special needs, with the goal of making life feel fun and normal.

Adoring eyes that offer reassurance that he will always be there, through all the joys, pains and challenges that life has to offer. An unwavering promise that he’ll hold his child’s hand through all of it and that they’ll be this incredible team. A father who rises up to any challenge without complaint in order to make his child feel like all the best things in this world are within reach.

He craves no recognition or attention for his loving ways and incredible parental care. Instead his reward comes from knowing the enormous impact he has on a life often so fragile and delicate that it needs extra tenderness to grow and thrive. He has an unspoken understanding that the role he plays in the life of his child with special needs and knows that he has profound perspective on what truly matters in life. His love knows no limits, no bounds, no end.

Thank you for being the greatest gift to a child with special needs.

Happy Father’s Day.

This first appeared as a guest blog I had written for Easystand for Father's Day 2015.

Today, Chris, Noah & Luke enjoyed the day in the comforts of our own home.  Enjoying laughter and love on a beautifully sunny day.  The three of them sitting on a bench together.  I watched from the kitchen window admiring the beauty of the gift they all are to each other.  Ending their day together by sharing in a favorite treat of ice cream cake.


Love,



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

Saturday, June 13, 2015

A Sweet Success: Noah & Luke's First Party

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When you become a special needs parent, so much changes.  There are days when you literally ache to feel and be like other parents.  Do all the normal things that everyone else gets to experience with their children.  You watch on the sidelines as things pass you and your child by.   Sometimes to push away the sadness you'll even go as far as to convince yourself that you are better off without those experiences.  And maybe - just maybe you are better off - but then you start to think about your children how much better off are they?  Never to get an invite?  Never to feel included? Wanted?  Thought of....

For all of Noah's life we've quietly celebrated birthdays and special events from the comfort of our own home, with only our own family.   Special, yes.  But sometimes you always wonder what life is like on the other side of birthday invitations, party favors and lots of other children singing Happy Birthday.   Because of the nature of Noah's disabilities he's rarely invited to parties.  We attended our one and only birthday party three years ago.

There hasn't been any invites since.  And because of Noah's significant sensory issues I knew that we'd never be able to host a birthday party for Noah or even for Luke for that matter at our own home as Noah would see it as an invasion of his personal space and just throw up the entire time.  I almost hung up my hat to the idea that a party of any nature would be in my children's future.  But I seen a flyer one day when I was taking Luke to swim class.  My fingers reluctantly picked it up, in my imagining the fun Noah and Luke would have.  But, the price tag for a pool party still a bit beyond reach.  I almost left it behind but figured I'd take it home and stew on it. 

It sat on the counter for days.  I came up with a million reasons why not; who would even come?  I put out a general feeler with a friend we had recently met, Lindsey, the CEO of ez-pz, knowing she had three beautiful little boys to see if she'd be interested in attending if I was able to fundraise for the fee to rent out the pool for a party.   Little did I know that my inquiry for an invite would lead to this amazing gift of her hosting a party for Noah and Luke.    Luke's birthday is in April and Noah's in December - but she wanted to give them the gift and experience of what a birthday party was like.  

Feeling like a child in a candy store, everything was so full of excitement.  I hadn't coordinated a party since before Noah's birth, and while a tremendous amount of work, I enjoyed hosting house parties and entertaining.  I felt that spark ignite.  That flame that you thought died out but didn't realize was just burning low.  I found a handful of friends to invite for the boys, mostly those who have walked into our lives for special reasons; to help Noah with therapy; former neighbors that shared the same special needs journey, a very special photographer that took foundation pictures of Noah when Luke was only 3 months old, and the ez-pz team and staff.  

I knew that this would bring the boys a lot of joy.  Noah, especially who could safely and comfortably be around lots of other children while being in the pool - as Noah's sensory difficulties are different while in water and it's easier for him to self-regulate.  A mixture of typical children and children with special needs were there, the very best of both worlds.   Although, I didn't want to send out "birthday" invites because to me it was just a gift in itself to be surrounded by others, the ez-pz team took up a collection of birthday cards and some gifts for the boys.   And they arrived with very special cupcakes from Nomélie Cupcakes who donated the sweet treats for their party.

It lasted two hours, but felt like it went by as fast as a flash of light... a true sign that you wish the moment would last forever.  Lots of fun in the water, splashing, swimming, parents and children.... my normal.  Something I had longed to be able to give the boys for a long time.  Another dream come true.  We had three lifeguards, two that work each with Noah and Luke so they were familiar faces, and it was so wonderful to have them at the party.  They made it feel complete, as I've grown rather attached to them.  They may not really know it, but they feel a bit like family.  I cling to those that care like a life-line that prevents me from sinking.  Caring hearts sometimes feel extinct, so when I find them I never want to let them go.

We had an amazing attendance, all but one was able to make it.  You always wonder how will it go.  But it couldn't have been any better.  Everyone was happy and enjoying themselves.  We had light snacks, chips, fruit and veggies, with lemonade.  Tablecloths that we had held onto way before Noah was even born finally got to see the light of day.  Luke and Noah came home with some new treasures, but most importantly a pocketful of memories that they'll remember for a lifetime. 



I sat and opened the collection of cards for the boys.  I'm not even sure how ez-pz did it.   Twenty-eight cards!  All filled with incredibly heartfelt loving birthday wishes and messages. Thank you to everyone who made this day possible.  Ez-pz is more than just a company with a fantastic product.  They are making a difference in so many lives and I will always be forever thankful for the difference they made in Noah and Luke's life.   A first party... when life is sweet soak it in. 

Love,




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

Friday, June 5, 2015

JUST DO IT!

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If you can't try to find humor in things on the special need journey I think we'd all lose our minds, and never recover.  Have you seen Shia LaBeouf's unusual motivational speech?  If you haven't I suggest you check it it out.   I have to laugh because I kind of feel that way about government services.  JUST DO IT!  Just approve what Noah needs and spare me the brain damage and JUST DO IT!   Can you see me delivering this kind of motivational speech in my living room of our house after I get denial after denial?... I imagine myself sometimes acting out like Shia having his moment of motivational aggression.... or however you'd describe it. 

 

I'm so over being jacked around and playing games to obtain government assistance that is designed to assist Noah and children like him. 

A stair lift victory finally came my way.  I'm celebrating - kind of.  I mean I am genuinely relieved it was approved as that is one rather significant hurdle down.  And the really funny part is I have to pay out of pocket $30 for it.  Because well - it's just too easy for the State to fund all of it.  So I'll fork out $30 - whatever.   But there are so many other things yet unresolved and in the pot so to speak.  And in some way it's kind of a bit of a game changer for the rest of the year's benefits - especially since they took some of Noah's benefits this year away to fund things that should have gone on last year's benefits.   And I can kind of anticipate the next play:  "We denied the pillowcases because we weren't sure about funding due to the stair lift."  Even though the pillowcase decision had no bearing on a pending decision on a stair lift.  But will now be used as an after-thought defense. 

And then I received this lengthy email that really talked in circles that just contributed to my agitation and rather diminished any feeling of victory that I was feeling over the stair lift about Noah's sensory clothing request.   Apparently, the hold up on there decision making process is that they are attempting shopping comparisons and researching what they feel is the "typical" out of pocket yearly costs that parents spend per child on clothing.  According to the state the average household spends between $800-$1500 per child a year in clothing.   I have no idea where they pulled those figures from, if you do any type of internet search you're going to find pages fulls of variables and thoughts on annual figures of clothing per child.  These variables depend on if we're talking about a single family, divorced families, families on limited income, families who have children with special needs.  What is typical?  Who do we define typical these days?  Are the Kardashians typical?  Are we typical because our "typical" child's clothing costs $3.88 at Walmart and I'm lucky if I can score him $50 worth per year new?  Then not only did they suggest that Noah's clothing costs fall under "typical" parenting financial responsibilities and are not above and beyond what a "typical" family would pay.  (I don't know any typical family who has a child's 12 pack of socks cost $75.... unless again we're talking about the Kardashians...)
But they decided to provide me with a comparison chart of what Noah's sensory clothing requests would look like up against apparel from Kohl's and Target, for what they feel are similar in nature.  First neither of those stores carry sensory clothing so we're comparing apples to oranges.  A graphic T-shirt at Target is NOT the same as a graphic print in sensory clothing made from Bamboo fibers.  Not the same.  You touch it and know it's not the same.  The prices tags of course won't be the same either.  
Their comparison chart did nothing but get under my skin. 
“Okay, I researched most of my research on Target and the Sherpa hoodie at Kohl’s site; Target didn’t carry the same type of item.
T-Shirts, one polo and 5 graphic pullover short sleeved shirts
6 sensory shirts requested, average cost $25.58;   Average typical cost of comparable item; average 10$ each.
Solid shorts,
5 sensory shorts requested, average cost $26.60 each; average cost of comparable item; 12-14$; $13
Long sleeve shirts;
5 sensory shirts requested, average cost $28.20; average cost of comparable item; $14-17; $15
Cargo pants; fleece type
4 sensory pants requested $43.50 average cost; average cost of comparable item, 17$
Long pants, stretch/sport
3 sensory requested, $30.60 average; average cost of comparable item $12
Hoodie, sensory Sherpa lined, $46, 1 requested; average cost of comparable item $33
Front Zip Hoodie; jersey
1 sensory requested, $38; average cost comparable item $22
Coverall one piece PJ type;
3 sensory type requested, $33.66 average cost; average comparable cost $9
PJ Set 2 piece
2 sensory type requested, $39 average cost; average comparable cost $16
Seamless sensory socks, 12 pair 75$; comparable price $7 per 6 pack; $14 for 12.”

The original email was really unclear about their intentions are of reaching a decision on this medically necessary request that a doctor signed! After continual requests for clarification it seems that the sensory request may be approved (with an unspecified amount), the really unusual request is the State would like me to send them a check for the "difference" for typical clothing.  Which seems so backwards to me.  Here are Noah's benefits designed to financially assist him, but wait let's ask for a check from the family to pay for what they deem the family's portion of "typical clothing costs."  I think it makes way more sense for them to determine an allotted amount dedicated to sensory clothing and then send us a gift card to each sensory clothing distributor so that we can make purchases on Noah's behalf.  I proposed that would make more sense than actually having a mailing county services a check. Here's your child's government funding, but wait you send us money instead! 

I also have some big concerns about Noah's accounting of CES funds.  There seems to be some big discrepancies between my records and theirs.  They claim to have paid out hundreds more for a bathroom modification than they told me was approved, they claim they've paid out more respite care hours than they actually have according to W-2 statements and records of hours, therapist payments are inconsistent, they say they gave Noah a communication app gift card for an amount that was higher than what he actually got and saying that Noah's home modification costs were higher than they were. And I keep thinking if they were a bank I would have fired them and closed my account!  So their explanation is that they are assessingthe overhead fee that FRE program charges for doing business.  And that they can take 3.5 percent for their fees in addition to any services paid on Noah's behalf.  So let me get this right, Noah gets 36K yearly minus 3.5 percent that the State wants to pay themselves with... and keep in mind Noah doesn't even necessarily get to access or utilize that entire 36K, with denials, and the State gets to keep whatever they don't allow him access to each year because they funding doesn't roll over from one year to the next.

And why does this all matter?  Because in my mind it's a form of fraud.  Where is the money actually going if it's being reported incorrectly and not going to the children it's designed to help?  And there are so many parents in my situation that don't question the accounting reports - they assume they are correct.  We are so overwhelmed that many parents don't have the time to sit down and figure out of the billing and accounting is correct.  And I can guarantee that most parents have no clue that the State is pocketing the money difference for what they feel are percentages of fees they want to pay themselves with.

I think it's rather come to a time where a meeting needs to happen at the State level to discuss these types of ongoing difficulties with processing the requests and fulfilling the needs of children for things that they should be able to utilize as part of their CES funded plan.  I'm also not cool with the fact that they are offering certain services upon the condition of the child's diagnosis.  For example a child with Autism on the same plan is entitled to swim classes (because there is the assumption they'll prevent the child from being a drowning risk) and then Noah who is denied the same benefit under the plan because (he doesn't have the capability of learning not to drown).  Subjective really because who says depending on the severity of Autism that you can teach that child not to drown?  And the benefits should be universal across the board regardless of diagnosis.  CES funding is not based on diagnosis.  And it's even further irritating when you find children in other counties with Noah's same diagnosis being able to utilize swim funding but his county says Noah cannot.  We have a very unbalanced and unfair system going on here.  And that's not cool with me. 

I'm not purposefully trying to make waves, but these types of things should be red flags for anyone and something that needs to be addressed and corrected.  The same rules should apply for everyone.  While some families are receiving great services on CES, there are still a lot of families like ours that are constantly hitting these road blocks. 

I also got a call that they decided to quit funding Noah's hippotherapy.  Yet another problem to deal with.  His therapy center called asking for a credit card that I don't have...

Of course we were told Noah had 27 sessions covered under CES, he has had seven to date.   The hippotherapy center, as frustrated as I am, express they too are rather put off with the difficulties it takes to correspond and receive accurate information status on children utilizing CES funding.  And these centers don't have to accept this funding.  So if it becomes a hassle for them they can very well withdraw from accepting the program for financial assistance to families.   Saddle Up a hippotherapy center down South has already decided to stop accepting Medicaid funding as of June 1st.  After some phone calls it was then decided of course that they made a mistake that Noah has $685 left in his adaptive rec funds.  Which would get him through the summer - but not beyond that in hippotherapy.   I'm not sure who is working these figures but I'm losing very little faith that any of them have any clue what they are doing.

And the thing is I don't want to view these people as the enemy but they are literally driving me crazy.  And I don't perceive them as people who want to assist Noah - but rather who are doing their very best to avoid helping him.   I wish we could get to a place where they'd realize that there is a better way to work with families than how they are going about it.   And that children with special needs are being denied the help they truly need and deserve while others make a financial profit from their circumstances.

So let's JUST DO IT!  Yes you can!

Love,



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

Wednesday, June 3, 2015

When the Tone Changes

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I've been trying to pedal faster.  Something my mom always use to tell me in childhood.  A phrase intended to mean work harder, try harder, keep going.   Yet sometime no matter how fast you pedal, you can still be pedaling in circles.  This road that I will always be on called the Special Needs Journey, pedaling my heart out.

I keep trying to find help in all the "right" places.  I spend gobs amount of time trying to figure out the next step of help for Noah.  The older he gets the more costly his expenses become.  I can no longer punt with baby strollers and make shift bath seats out of typical baby high chairs that I strip of fabric and lining.  Recreational items are triple the cost.  A toddler adaptive bike costing $1,000 out of pocket is now $5,000 for a child Noah's age and size.  He outgrows equipment easily.  His long legs, and trying to get Medicaid to understand that not every child is on a growth chart of not needing a new wheelchair but every 3-5 years will likely never happen.   Fundraising efforts do very little these days, partially because I think everyone grows weary at some point in time of what feels like continually ongoing fundraisers for Noah.  I hunt out non-profit organizations that best that I can - now needles in a haystack because you can only use one resource once then it's gone.  Most of which I burned up on Noah's early intervention years (ages 1-3).   

Non-profit help also tends to be a very time consuming process.  Lengthily applications, copies of your W-2's, recent tax returns, a story about your life, pictures of your child so they can see if he's "cute enough" to be added to their marketing campaign for donors, doctors and therapists recommendations, letters of confirming diagnosis, and that Noah's condition is degenerative and severe enough to be considered worthy of help.  I jump through all the requested hoops,  sometimes happily, sometimes not.   I'll get a hold of many of these non-profit directors, we'll have heartfelt conversations about supporting Noah and our family in the community, talks of "we are here for you,"  "we'd love to meet you," "you're not alone, don't worry we promise to help," "It's a God thing, you found us for a reason."

I think that the goal is within reach.  Help for Noah is on the way, be patient, good things will come I tell myself.   I feverishly fill out all the applications to demonstrate Noah's eligibility for help, copy all the requested documents, reach out to have his doctors confirm diagnosis and prognosis for his life.  I mail it in, timely....

Then Silence.

And More Silence.

Finally I decide that a lot of time has passed without an update.  No phone calls, no emails.  Just silence.   So I start trying to send sweet emails politely asking for a status update of Noah's submission for help.  Trying not to jump the gun or be a nuisance.  I give it two more weeks.  More silence.  I decide to pick up the phone reach out to the directors and those who promised to help.  I leave messages, that go unreturned.   A week later I try again, finally reaching someone who picks up the phone by chance.   The same person who promised help now has a change of  tone to their voice.   No longer are they wishing to meet Noah, let alone help him.   Excuses follow for why they've delayed getting back to me, their tone says it all:  "we were trying to avoid you with the hopes you'd fade into the sunset and just go away."  They deliver the news as fast as they can followed by a list of excuses of why they didn't get back to tell you they've decided to decline help.   I've been golfing, surgery, we've had board meetings, we've consulted attorneys and they say we can get sued if we help you over another child, our large fundraiser didn't do well so we can no longer help you.  I think I've heard it all.   The let down no less hurtful regardless of how they go about.  Half of me upset that they didn't have the courtesy to find a better way to reject Noah's plea for help, other than to pretend that an application was never submitted, and assume that I'd understand that silence meant no. 

It's almost that feeling of when someone holds out both their hands to say I'm here for you, don't worry.  We've got this, we'll help Noah.  I take those arms and believe in them, only to have those same arms push you away and say... well just kidding.   And time and time again this happens.  And I am left feeling so incredibly stupid. 

I have such hope and faith in all things - people even that they have true intentions.  I suppose I'm an easy mark.  Easy to get sucked in by false promises, as in the end my mother also taught me that sometimes things are too good to be true.  Yet where do I continue to look for help?  Believing that there is hope, someone saying yes we'll help you guaranteed just fill out our application to make it official... then nothing.   Why not be honest?  Why lead me on to believe that help is there when it isn't?  Why allow me to invest all of these precious hours gathering required documentation all for nothing?   That is the worst thing that a non-profit organization can do to a family seeking support and help for their child with special needs.   Don't extend a hand and kind and loving words and promises that you have no intentions of delivering.  

It's hard for me to have faith in humanity,  I want so badly to, but anymore I think I am simply a bad judge of character.  I'm easy to rope in, because I have no where else to turn just like thousands of other special needs families in dire financial circumstances.  Then you start second guessing what changed?  Everything was so beautifully positive and embracing.  Was Noah's picture not "cute enough?"  Did they read something in his blog that made them feel that this mom just "complains too much?"  What was it that caused this change of tone? 

And apparently I've been so focused on trying to find Noah help in all the wrong places that I failed to recognize that his bruxism was caused by an ear infection that maybe had gone on a month or more.  Here all this time I thought I was dealing with a secondary cause of his cerebral palsy, not a warning that his ears were feeling pressure and pain.  It was only because Noah's little brother, Luke got a summer cold and told me that his own ears hurt until the lightbulb went off in my head that Noah too could also have ear pain causing resulting in the only way he could communicate that to me - teeth grinding.  So of course I'm kicking myself thinking maybe if I hadn't been so invested in peoples false promises I would have noticed the warning signs sooner than having to wait until Luke got sick.  Both boys are now on antibiotics and hope they will be on the upswing in the next few days.  My throat raw, either a sign of stress or that I'm about to take on their illness too.   

But at least the sun is now out, the weather and turned into 80 degree days, which makes a summer cold exceptionally frustrating when you can't fully enjoy the nice days.  And now instead of sunshine I seem to be craving endless honesty and sincerity.  Something that I'm not sure readily exists anymore.

Love,



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

Thursday, May 28, 2015

Feel Better Friends

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Noah received a special doll from Feel Better Friends.   A Feel Better Friend is a handmade doll made from lots of love and well wishes that are made by volunteers donating their talent and time to bring smiles to children battling illnesses and disabilities. 

"In May of 2014 Shanon Fouquet, artits and designer from Shanonigans, came up with the idea when she saw a picture of a little girl, Berkeley who was battling cancer holding her American Girl doll.  Like most little girls who have this popular doll, Berkeley was “twinning”, or dressed identically with her doll.  Shanon looked at this particular photo of this brave little girl who was proud to be going ‘wigless’ to her doctor’s appointment that day, and Shanon couldn’t help but wonder if Berkeley would like for her doll to be able to go ‘wigless’ too.  It was then that Shanon decided to come up with a handmade doll created just for her with a wig and matching clothes that could go ‘wigless’ just like Berkeley!  Shanon had so much fun making Berekley’s doll that she decided to make more dolls for other children suffering from cancer and other illnesses, who would like the comfort of a Feel Better Friends doll custom made with their own likeness and characteristics. It was then that the FBF project was started and quickly grew and soon there were enough children wanting FBF dolls that Shanon couldn’t keep up.  She started a volunteer group of other crocheters who wanted to give just like Shanon.  Now with over 300 volunteers across the US and some in other countries there are children all around the world receiving the love and comfort of their very own FBF dolls."

Noah's doll artist, Amy Anderson reached out to us in early May to coordinate the details of Noah's doll.  It's so important to them to make them as closely as to the child as possible.  Some incorporate disability features like wheelchairs or walkers for their dolls, while others pick themes and incorporate their child's likes.  We had the choice between a wheelchair accessory and an interchangeable Mr. Tumble outfit.  The choice was not a hard one.  Right now Mr. Tumble is a huge part of Noah's life.  So we chose the Mr. Tumble outfit as an accessory for Noah's doll.  His doll was made super fast and in about two weeks arrived for him.  Noah adores his doll.  And Luke recognizes that it's a Noah's twin doll so he doesn't try to poach it from Noah.  It stays close by with him during the day and Noah does his best to wrap his arms around him. 

You can tell that a lot of love was poured into this doll.  It's a wonderful thing to find dolls that look like our children and represent them and their abilities.  Cognitively Noah understands quite well his environment and surroundings and the older he gets is becoming more aware of how different he is from most people.  Toys and dolls that resemble him I think help him identify that although maybe different from most that there is still someone like him - this sweet doll. 


A new movement has started with a compaign called Toy Like Me.  A petition calling to action to challenge more vendors to incorporate toys with disabilities into their line.  That could be simple things like a Lego set that you could build offering a disabled parking space or ramp, dolls that have a wide range of disabilities,  a Little People line that have wheelchairs and walkers.  Everyday toys that any parent like me can find at Target or Toys R Us that isn't going to cost us a fortune.  And these toys would be beneficial for typical children as well.  It opens the doors for questions and exposure to children of all abilities.  I'd even someday love to see larger motion picture movies start incorporating more characters with disabilities.  Anytime a large blockbuster movie comes out they inevitably have a toy line to accompany it.  But I have yet to find a movie that has a character with disabilities that finds it way to transforming into a toy that I'll eventually see in a Target isle.   We have a long way to go, but in the meantime I'm so grateful to Feel Better Friends for designing this very special doll for Noah.  A true keepsake that he'll have for years to come. 

Love,



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