Tag Archives: respite

Sparring

John and Ronan have been preparing this past year to enter martial arts tournaments with their Tae Kwon Do Sparring mates.  The first tournament finally presented itself this past weekend as IMAF at the ESPN Wide World of Sports Complex.

Freedom Waters

Sunday proved to be a beautiful day. A light breeze brought the heat down as Riley, Ronan and I met up with a gathering of special needs families called in by the amazing Debra Frenkel of Freedom Waters Foundation

Letter to the Governor

June 16, 2015

 

Office of Governor Rick Scott

State of Florida

Woman in a Tiara

Last Saturday evening an unusual event happened…. John and Iwent out alone.  It was a little disconcerting as this has only happened a handful of times since Riley’s birth.  It only happens with considerable planning.  Saturday, however, was an important occasion; Debby Frenkel, Executive Director of Freedom Waters Foundation (FWF), was celebrating a birthday.
The boys each had plans. Riley spent his evening with Debbie, PICs respite nurse, and Ronan had dinner and movie plans with his grandmother, aka Kappi.  This left us free to drive away… after 6 pm in the evening.  As John observed, we were driving after dark!  Parents of only typically developing children lament the few moments they get alone together and make great fuss over date nights, yet somehow they seem to happen at a fair rate of regularity – at least from my perspective.  Special Needs Parents must go to extraordinary lengths for the same moments. During this extremely rare event it is still difficult to not be wondering each moment what could and is likely going wrong at home.  The evening never lasts long.
John and I need more of these evenings: for our relationship, our own health and well-being.  It also would not hurt to spoil ourselves on a rare occasion. Driving south on Tamiami toward Naples, I noticed the local Persian restaurant I wanted so much to try.  “One of these days we are going to eat there,” I swore out loud.  The matter-of-fact answer back, “We tried, remember.  They don’t have take-out.”  No take-out clearly precluded us from having anything to do with any establishment.  As disturbing as that answer was, it was also true.  No Persian food for us.  That did not stop me from rolling my eyes at John and repeating this crazy answer several times throughout the evening as if I lived in some other reality and the only thing stopping me from eating where I wanted was John’s reluctance to sit down in a restaurant for an evening.
All the same, I am glad we went out that evening.  I will cherish the vision of Debby in hertiara and even better John drumming along with the Cuban drummers.  That happened when I was without camera in hand unfortunately.  Without the crazy woman in a tiara, our lives would be just a little less.

 

A brief conversation with Kate, an FWF volunteer, brought me back to my reality when I was asked where the boys were.  Actually, I am almost surprised to be recognized without them by my side and in my arms.  I explained how fortunate we were to have a respite nurse that evening, sharing that we now receive 150 hours a year of respite.  This has been one of the greatest gifts of our life.  The response was unexpected, “Is that all!  In Alaska, Special Needs Parents got at least one weekend a month!”
One weekend a month?
One weekend a month!
This got me thinking.  Every state, every county in fact has different services.  Different budgets.  Each state is constantly reevaluating those budgets and taking from one fund to boost another.  Services change, times change, budgets change and attitudes change.  even when services exist they can be quite challenging.  Do residents even know they exist?  Is the age range wrong, the diagnosis, the family income?  Perhaps the family has no energy left to pursue anything at all.  Now, this is a scenario John and I understand all too well.
Going forward with this blog, I would like to explore the current situation of each state.  Not an in depth exploration as I do not have the access to such information.  I would however, over time, like to find some of the perceptions with the status of special needs services and lives throughout the country.  This should also be approached with the understanding that there will be as many different experiences in any given area as there are special needs families.
As I mentioned earlier, it is possible for many useful events to be happening.  Knowing about it is yet another.  My previous post is an alert to the FDLRS Open Lab Night.  I learned about it at last Friday’s Parents as Mentors, a group of Lee County Schools ESE parents.  The flier was shared widely be a Lee County Schools employee.  Yet, I passed it along to Riley’s teacher at Rayma anyway. She knew nothing about the event, nor did the school Principal.  She thanked me profusely for bringing it to her attention and they sent it home with every student in the school.  Now, why is it so difficult to disseminate information?  Really, I would like to know why this happens.  The school was so happy to know about it, how is it that they are in the same school system with no notice of a useful event whatsoever?
Would any of my wonderful readers like to contribute their own experience to this series I propose?   For the moment, I shall call it The State of Special Needs.   You are each certainly welcome to weigh in and I hope you do.  Anyone care to wear the tiara for a day and share?
We are all special… Stacie Wiesenbaugh

Stacie’s Theory of Relativity

Stacie’s Theory of Relativity….
R.espite
E.quals
L.oving
A.ll
T.hose
I.
V.alue
I.n
T.he
Y.ears… Me, mychild, my family For a Moment in Time….
Respite is a moment in time, no matter how brief.
It is spending time with you and going back in the past to remember who you are.
It is spending time with a spouse and remembering why you got married or even said hello to them….creating future memories.
It is holding on to a moment in time that is for you,even briefly, that reminds you of who you are (the person you were or thought you would be)…
It is living in a moment with those you love….
It is spending time with a child and forgetting the disability…
Respite is not about the hours in a day you have to take care of a child.  It is about the hours in life you are given and how you will spend those moments.  Respite is about spending time with the most important  or more importantly,share those moments with others….
This is 10 minutes of my life to post.,…. share with others… my respite.
Written by my Sweetheart
Smiley

Got Respite… Go Fly A Kite

We are so blessed to have respite now.. through the Partners In Care program we are able to request about 150 hours a year.  I had lined it up awhile back hoping John and I could dive together this past Saturday.  Diving, however, is out for John at the moment due to his ear infection.  So, Riley happily settled with Nurse Debbie, John, Ronan and I headed to a secluded beach off Lover’s Key with our kite.

It never escapes us that we can never take family outings as other families do.  Riley is always left behind or the outings must revolve around Riley’s needs.  But, we have a son who needs these adventures and off we went.  Discovering he was required to wade through a lagoon to arrive on the beach upset Ronan at first, but by the end of the day he was the first one charging in ignoring all the crabs and jumping fish.

We are all special… by Stacie Wiesenbaugh

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from “ReRe,” John’s mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye…. no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds… those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don’t currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.’s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us…. mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special… by Stacie Wiesenbaugh

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