Friday, July 15, 2011

A letter from United Cerebral Palsy Regarding Medicaid


Friends,

Medicaid is under attack, and as supporters and members of the disability community, our voices must be heard. Mark Perriello, the new CEO of American Association of People with Disabilities, and I met with leaders in the White House yesterday to discuss potential cuts to Medicaid. We took several families, whose daily lives depends on Medicaid for support, to tell their stories.  They included:
  • Anna Liebenow, who has Multiple Sclerosis and relies on an aide to help her in and out of a wheelchair every day. Without Medicaid support, Anna is unable to volunteer, work, and lead a full, independent life.  With significant cuts to Medicaid, she'd stop working and stop paying taxes. That certainly won't help our economic recovery.
  • Micah Hetrick is 22 and has Down syndrome. He recently received his high school diploma and volunteers in his local library. He has the assistance of a provider through Medicaid. Without this support, Micah’s mother, Sue, is forced to stay at home and is unable to work full time.
  • Linda Guzman is raising her 17-year-old son, Javi, while working full-time.  Javi, who has autism and Ehlers Danlos Syndrome, receives services through Medicaid, including medical care, an aide to be with him while his mother works, and training in the life skills he needs to achieve greater independence and reach his potential. These families put a human face on the issue, and show that this is not just about dollars and cents, but real lives.

Many people wrongly view Medicaid as "a huge government welfare giveaway to lazy people." In fact, more than 8 million people with disabilities and their families benefit from Medicaid. What will happen to Anna, Micah and Javi if these services are cut?

The level of cuts range between $100 billion to $770 billion!! With Social Security and Medicare back on the negotiating table, Medicaid, which lacks a powerful constituency, will be lost in the fog. Our voices must be heard!

Please read more about this issue and join the conversation.  Millions need your help.

Please make a contribution today and keep us in the fight while sending a powerful message to Washington.

Thank you for your support.

Sincerely,

Stephen Bennett
President and CEO


And I also share off subject a Jack Black Video

Thursday, July 14, 2011

A Webkinz of My Own

Today is very special.
It happens to be my birthday and it is the first time I have had the pleasure of having
the festivities organized by a six year old.
There has been quite a bit of whispering behind closed doors.
No birthday is complete without a Bakugan card and many many hearts.
Ronan naturally planned for Riley as well... one cd full of my favorite music
and a detailed birthday card signed by Riley.
Isn't it sweet!  I do wonder if Ronan consulted Riley on this card.
Promptly at 6:30 am this morning, Ronan marched downstairs and presented me with
"Mommy Clown Fish"
Exactly how I feel today!
And my Sweetheart has been paying attention... as if there is ever a time he doesn't...
I received the hinted at, super luxurious pillow... may as well make the most of the little sleeping I do.
My card played a snippet of the song "I will survive..."
Quite appropriate.
However, it got a little surreal later.
Ronan went of to NEC camp with Daddy.
Dropped Riley at Karl J. Drews.
I went to brave the lovely Miss Jaimie's spinning class...
and the choice song of the day... "I Will Survive."
Could the universe be telling me something.
I share this day with my beautiful sister Kara (below with Steve). 
 Six years apart, both Wed. 4:20 am, 7'6".
Signing off now... I have boys to collect and a Webkinz to feed.

Oh, one more thing of note... my friend Paul is seeking cookbook entries
Cannot help myself but share, any chef's out there willing to try....
"Working on new cocktails book about Bloody Marys (Hail Marys: Fresh Twists on a Bloody Great Cocktail). The boring boozy salad we all grew up with is being re-engineered with exotic ingredients such as aquavit, tequila, whiskey, rosemary-infused vodka, wasabi, pickled white turnips and eggs, beef jerky swizzles, anchovies. I’d welcome recipes (credit and thanks given)."
by Stacie Wiesenbaugh

Wednesday, July 13, 2011

Daddy Ramblings: First Day of Summer School


8:01 am:  Call from neighbor “Is Stacie OK?”  Yes, I reply, “Why?”  
In response: “I saw her running down the street screaming at a bus in her night gown.”  
Me: “oh, that, yeah I noticed that too.  First day of summer school. (pause)  Went better than I hoped for.”… some time earlier….
First day of school for a Special Needs kid.  When the bus driver who never dealt with a special needs kid (or protective " mother bear" as I call them) expects kids to be waiting on the corner, even though the route is a specific address, she will do a 30 second count and quickly drive away (bus schedule).  Bus pulled up, Stacie sees it and promptly finished brushing Riley’s teeth.  Started to wheel him out/at door 15 seconds later.  Bus starts to pulls away.   
Stacie looks to first person she sees Ronan (younger son),  “Watch Riley” who then looks to me (Dad standing next to Riley~!?/chopped liver?... Ronan's expression is like "watch him do what?") I tell Ronan I will be taking him to summer camp late. 
In her momentum Stacie starts to exit with wheelchair in hand (at door!!) and quickly is out (The Greeks really should have used a wheelchair for a battering-ram). The door flies open.  Stacie is off. The bus is off.  Third time in my marriage I saw my wife actually run.  Bus pulls away.  Ronan, Riley and I standing at the door:  Ronan asks “what is mommy doing?”  I sip my coffee as we all look out the door.... Stacie (running), bus (driving) and curious neighbors (standing) on street... and I reply “being mommy.”  So begins the first day of summer program.
Again, better than I hoped for as far as first day of summer school goes.

--
John Buck
Facebook: The Shark Tooth Guy

Monday, July 11, 2011

Axis: Physically Integrated Dance Company

B.O.N.E. Up On Skeletal Development, TherExtras

Helping Riley achieve the highest quality of life and achieve as high a comfort level as possible keeps our minds constantly occupied.  Here is one resource for understanding skeletal development on the blog: TherExtras.  Feedback on the post to make it even more helpful for caregivers of children with CP is welcome and appreciated.

Saturday, July 9, 2011

Reliving Zachary's moment: By Rebekah Aldridge, Guest Post


In 9 years of being a mother of a special needs son, I think I have heard most everything you can imagine.  From insults to injury and blessings to prayers.  So it kind of comes without saying that you develop a thicker skin than most.  Otherwise you would certainly be offended far too often than you would like.  
Zachary enjoys yachting with his mom with Freedom Waters Foundation, above.

Anyway, every parent deals with their "wound" in a different way.  I have chosen to see my situation as an opportunity to be my best (even though most days I do not feel like that).  It has been 9 years since Zachary suffered severe abuse at the hands of his biological father which has left him with permanent brain damage and left paralysis.  Even though my son is the victim of this abuse and I try not to be selfish about his situation, it has taken several years to try not to think about it.  Until Tuesday, I thought that this wound has long healed.  But I found out that not only is it still an open wound for me, but it is an ugly infected one that reared its ugly head this week.  This is not to express my opinion of Casey Anthony at all, I am not here to solicit your opinions either.  It is merely watching the outcome of her trial that has exposed my ugly, sore wound.  

See, I am from Orlando and my son was abused in Orlando.  We spent 52 days in PICU and most of those days he was in a coma.  It took nearly 3 years to put his father in jail for his crime (which to this day has never been admitted by him).  I faced many, many judgments from my family and friends by offering a plea deal as opposed to going through a trial.  It's a very long and boring story that leads up to that point, but the short and sweet of it is that I offered (through the State Attorney's office) a 5 years sentence in exchange for a guilty plea.  MANY people disagreed with my decision and thought that I was letting him off the hook far too easy for this life sentence that he served to my son.  I have since settled myself with my decision and moved on.  

I did not know that it was still a very sore subject until Tuesday.  Because there was also such a lack of physical evidence in my sons case, his father could have walked out of that court room, just as Casey Anthony soon will.  Again, I am not here to hear about her or others opinions about her but merely to share my wound process with you.  My reaction to the verdict was outrageous.  You would have thought that I was a member of little Caylee's family.  I had to go clear my head, and after much deliberation with God, I realized why it affected me so much.  This was my own little precious wound that no one has ever been able to see.  Like a little secret I have been hiding from the world under this strong woman facade.  It is never my goal for people to feel sorry for me in any way, my son is truly a blessing and he is a miracle child.  He survived what most children do not and has overcome so much in 9 years.  To get back on track, I thought these feelings were long behind me.  The reality of it is that they are not.  Since Tuesday, most of my family has called to say what a great decision I made 6 years ago. 
 "Good thing you chose to take the deal," "I was against you offering the deal, but I have changed my mind after today"... and other such things.  Which I am grateful for!  I have an amazing family, that has supported me and Zach through the most difficult of circumstances.  

My point to all of this is that even though I have developed this thick skin to most everything, there are still things that can send me to my knees in tears.  After all we have been through and the things I have seen and heard, you would think that nothing could faze me.  So now I am working on picking myself back up and learning to deal with this new feeling that has sent me reeling.  My mother said it best today when we were at lunch, she said "You have a huge scar.  Even though your wound has healed there will always be a scar.  Nothing will ever change that."  She is right, no matter what I do that scar is still there and I was completely blind-sided by what was festering underneath it until it was opened and exposed on Tuesday.  All I can ask for is prayer, that maybe with more time my scar will fade.  I can tell you that 9 years later I still feel the sting of the day that changed our whole life.  I would never trade one day of the life I share with my son, he is just awesome.  But I would ask that if you read this and you see someone with a child that has difficulties or "looks funny," try not to stare or say something ridiculous, because that person has probably suffered a great deal and a harsh word will not make them feel any better.  

I have developed a skill that I am not proud of since my sons accident and that skill is making people feel stupid while being super nice about it.  Today at Calistoga, a man (I assume that he must have been starving) cut in front of me and let the door slam in my face.  I had my 5 year old in one hand and my son in the other (by the way it is obvious that my son has disabilities, they are physical).  Then he turned to watch the door shut in my face.  I could have run in there and yelled at him, and called him was he truly was but instead I simply smiled at him and said "Here let me hold the door for you, I am sure you must be starving" and I walked away.  I did not give him a chance to talk back to me, because in my opinion his comment, even if it was an apology, would not have mattered. 

People are rude and there is nothing you or I can do about it, but maybe by sharing my experiences and Stacie's experiences people who read this blog could be less rude.  Yes these things really do happen, it sounds appalling but it's true.  Remember this, just because the child may not hear what you say under your breath, doesn't mean I can't.  Thanks for letting me sound off!

by Rebekah Aldridge  "Make the best decision you can with  the information you have at the time."

NEC Fundraiser at Chico's


The Company Store:
White House and Black Market, Chico’s & Soma
 
You’ve been wondering how to get in and Now is your chance!
Chico’s welcome’s Naples Equestrian Challenge to a shopping spree, Fort Myers employee ....
The Company Store
September 16, 2011
4:00—5:30 pm

Tickets: $35.00

Hurry, tickets are limited.

Accessories (earrings, bracelets, necklaces, watches, scarves, belts, shoes, purses) - $6, tops, bottoms, and lingerie - $6, dresses and jackets- $11, gowns, suede, leather or specialty items - $21.  All prices include Florida State sales tax. 10% of purchases donated back to NEC.  More details to come with reservation. 

Submit reservation and payment:

Naples Equestrian Challenge
The Company Store with NEC
206 Ridge Rd, Naples. FL 34108
239 596-2988

The Company Store with NEC
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Address:                                                        Email:             

Payee:      Naples Equestrian Challenge

Check #:                                                        Payment Amount ($35/ticket):
Credit Card: 
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Attendees (List is firm by Sept 14th):