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.


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