Thursday, March 31, 2011

Medicaid Waiver News: Gov Rick Scott plans cuts to services for developm...

Medicaid Waiver News: Gov Rick Scott plans cuts to services for developm...: "Gov Rick Scott plans cuts to services for developmentally disabled. A 15 percent rate cut to group homes & caseworkers."

Gulfshore Life Magazine

Gulfshore Life Magazine was kind enough to allow me to speak with writer Denise Scott  for The Charity Register regarding our experience with Naples Equestrian Challenge.
This is my own photo of Riley on Nick with volunteer Miss Claudia as one of his sidewalkers.
Excerpt from the Setember 2010 issue:
"Stacie Wiesenbaugh of Bonita Springs brings her son Riley Buck, eight, to ride. He was born with a brain hemorrhage that caused cerebral palsy, spastic quadriplegia, hearing and visual impairments, and other complications that require him to be strapped to the horse. She remembers their first visit. “The wind was really blowing,” she says. “The smell of the barn hit him, and he started laughing hysterically and wouldn’t stop. It was like this place was the right place for him. There are very few opportunities for him to participate in anything and enjoy himself.” "
by Stacie Wiesenbaugh

Monday, March 28, 2011

A Day in the "Life of Riley"

This expression certainly has a very different significance in my family than it's intended meaning
The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday.  It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life.  I also remind myself that this is a niche blog not a reference book by a professional.... and I may very well be the only one reading it.  Well - maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction.  But hey, we all have dysfunction.   Perhaps I will simply not add any more concerns to the day and just make some "notes to self" for more information later.

Rising with Riley after a night of Riley and then getting out the door with Riley... more on that later.  No school today.  First appointment of the day is 8:30 am 45 minutes north  with the Pulmonologist, Dr. B.  Always take the first or second appointment of the day... more on this later.  On this very humid morning, Riley was dressed lightly.  As we headed north a heavy downpour slowed us down and drenched us while unloading from the car... more on this later.  Should have called this post "More on this later."  We had a new experience this morning.  I put together his wheelchair and our supplies underneath the building entry while a pretty Latina unloaded her three young boys into the same space as quickly as she could to keep them dry.  Normally, most people pretend the child in a wheelchair is simply in their imagination.  As I brought Riley through the rain, she whipped a Whinny the Pooh blanket off her baby carrier  and threw in over the wheelchair before I could put him down exclaiming  "He'll be cold!"  She touched my heart worrying over my son while her own waited.  She eventually accepted the blanket back when everyone made it inside.  I'm sure she has no idea how exceptional she is... but I will remember the few moments I was near her.

Time to go through the details of my day a little quicker.  They are important because the difficulty of getting  through a special needs day is so huge to me even after all these years.  However, it's a niche blog and I have time.  There was a plan for the day.  As always it changes.  Breakfast for Riley in the exam room...  I feed him when and where I can.  Today I want to recognize how greatly I appreciate the professionals caring for Riley, though sometimes I do take issue:-)... more on the later.  Dr. B is wonderful with his gentle probing to ensure he learns all the detail he needs and has never failed to take his time to educate me further.  Today's result: stop Pulmicort treatment for the summer, Riley's lungs are clear!  Thank you, thank you, I will.  Second appointment of the day at 11 am, we move on the Occupational Therapy (OT) with  the beautiful and competent Miss J.  She is amazing and I learn from her each time Riley and I sit on her mat.  I am grateful for Miss J.

Somehow during the day with little thanks to me, Ronan has a play date and even tennis lessons.  Daddy is looking out for him!  Riley has many more activities on his regularly scheduled Mondays.  The Chiropractor and Horseback Riding are still left.  However, his little body doesn't always cooperate.  As soon as he made it home and began lunch he began vomiting.  Unfortunately, he cannot warn us and this is an event in itself.  Vomit is one of the things that pushes my buttons due to our history... more on this later.  Eventually he seized for 4 minutes... oh, must remember to log this event.  Cancel everything!  That's how it goes.

Tomorrow is the dreaded IEP.

This was not a day to write home about.  It was a day in the Life of Riley.  More on that later.

Sunday, March 27, 2011

Wild Side

Coincidentally timed with my intention on remembering life and marriage before children.   A new cooking show debuted this past week: "Marcel's Quantum Kitchen"  episode Walk on the Wildside.   The kitchen happened to be catering a fundraising event for the rescue and rehabilitation organization.  The show brought images of the Wildlife Waystation flooding back to John and myself.  I have not had the privilege of being on the ranch in over eight years.
Every Saturday, John and I made the journey from our Playa del Rey condo to the Wildlife Waystation in the Angeles National Forest.  I thrived our volunteer experience there.... it was often hot brutal work (especially for John), and every moment was precious.  As I sit here I can see one of my favorite pictures of a napping Idaho lion from one special afternoon John and I spent adding landscaping to his section.   Very few have the opportunity to experience this amazing volunteerism and I was fortunate enough to share it with my life partner.

The Wildlife Waystation blessed our lives and I miss it every day.

Friday, March 25, 2011

Stacie & John

Marriage before children... it almost seems unreal now.  Perhaps we were really only children ourselves; we have changed so much.
Here, John and I are inside the Merolt barn outside of Aspen the morning of our wedding day. To understand where I am now... I must look back.

Wednesday, March 23, 2011

"Living with Cerebral Palsy" by Christopher Capozziello

"Living with Cerebral Palsy" by Christopher Capozziello

Riley's Smile Needs A Blog

  Today is March 23rd, 2011.  I have thought about why this blog should be written for a long while now.  Long enough... it's time to actually blog!
  No one should need to write this blog.  No one should need to read this blog.  But that is in a perfect world.  I need to write it and others will need to read it.  This is why... Riley and his/my family are a special needs family.  Not everyone can understand all that being a special needs family my involve.
  My primary intent is to share what it does mean to be special needs to those who are just outside of this experience but have a need to understand it.  This is going to be a challenge for me.  How do I share our experiences while not overwhelming myself and readers.  Today, that is not a problem.  I am the only "follower."  Hopefully this will change very soon.  However, if it remains me as the only reader than I have a wonderful self-therapy.
  Thank you for writing Stacie:-)