Tag Archives: Partners In Care

The Truth about Yes” & “No”

A few weeks ago our little family ventured beyond the boundary of SWFL.  I know: it’s hard to believe.  We are trying to become more active as Riley becomes healthier and we have more energy and time to explore.  Our adventure took us to the Tampa Bay Aquarium where we met up with Miss Jessica, Riley’s 2013-14 ESE teacher, and met her beautiful one year old son for the first time.
Seeing her reminded me how one determined teacher with a mission can make a difference in the life of a child and their family.  This is especially true for children with learning disabilities.  Miss Jessica taught Riley to signal “yes” and “no!” Riley could communicate!

School’s Out for Summer!

This past week has been full of the celebrations for both schools.  The two school experiences are like two sides of the same coin for me.  Two sons, two schools, two classrooms, two teachers… how different could the two possibly be?

Each event causes me to ponder our odd life.  It appears that perhaps I have not one, but two special needs kids.  Last summer, the leader of Ronan’s little Bible Camp group suggested this to me.  Riley struggles simply to take in his world and to be a part of it.  He truly tries, and he tries harder all the time to communicate and participate; he strains simply to touch, see and hear.  Ronan, on the other side, takes it all in so effortlessly. 

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

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

PATCH Saturday

 

On Saturday, the boys and I along with Ronan’s playmate enjoyed a morning of art therapy with P.A.T.C.H., Project Art Therapy for Children’s Health.  We were joined by several other PIC and Candlelighter families.

Article in the Pittsburgh Post-Gazette about a friends nephew: Wheelchair accommodations open a family’s home to disable friend.

New online magazine discovery: http://www.editions.complexchild.com/current.html
Here is a developmental resource page from Complex Child: http://www.complexchild.com/developmental.html

Stunning video: http://vimeo.com/terjes/themountain

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

State of July

Keeping up with my blog is a challenge I gladly accept, however it may be more than I should have taken on.  This mommy is feeling a little sad and run down and really shouldn’t share it all, yet I blog on.  Visiting other special needs blogs,I find many of them have autistic children who at least feed themselves or regularly scheduled nursing visits to get them through the day or some sleep at night.  There is the occasional blog where the writer/parent is in the most difficult stage of their child’s disability and has found this one outlet to vent.

Speaking  of other blogs, here is an honest account ofa special needs child finding his smile at Christians Journey. Also, I strongly recommend a video on Youtube that is definitely worth watching and sharing, The Strongest Dad in the World.
Do not mistake me, there are many moments to be grateful for in the past several days.  First on my mind, John and I had some fun together!  Really.  We did. I think it’s been a year since I was out scuba diving last.  Our very precious respite hours were arranged through Partner’s In Care (PIC), bringing Miss Debbie to watch over Riley.  Ronan spent the day with a schoolmate.  John loaded up the car and off we went to Venice for a day of fossil diving.  John got me aboard The Shark Tooth Guy’s kayak and he swam alongside.  Strangely he was winded long before me:-)  Visibility was dreadful and John searched until discovering that the blocks (an artificial reef area) off Alhambra had at least 1-2 feet of visibility.  I held onto him most of the time but frightened him quite a bit by getting lost at one point.  I was lost, he was worried.  After lecturing me above, he recovered and we had quite a nice day together.  I regrettably supplied lovely fodder for The Shark Tooth Guys facebook page.  My first return into the kayak did not go smoothly, not that I expected it to be graceful.  John coached me on how to maneuver myself back into the kayak after he lifted all my diving equipment back in for me.  I tried to push my weight toward the far side but managed to tip the kayak swiftly into my face and now sport a fat lip.  The triumph was that we didn’t lose any equipment into the ocean depths!  Not so bad then.
Here is the weekend’s fossil collection.  This is a riot, everything in our lives now includes a burp cloth, one of the many cloth diapers we use to be prepared for Riley.  I leave trails of them everywhere I go and now they are even used for photo backgrounds.
Fourth of July we stayed home.  The big activities of the day was swimming.  Ronan was determined to have time in the pool with Daddy. I don’t believe he noticed the deluge of rain, but I know John did.
To the other sad and run down special needs parents and caregivers searching for your child’s smile wherever you are, I invite you to share your story.  I see you visit silently from all areas of my little widget globe.  No judgment from me.  This is simply a place to paint a portrait of the special needs life.  Send me a comment and we’ll work it out.
We are all special… thank you for stopping by, Stacie.

Here is a discussion on inclusion by Galen which all special needs parents debate.
Since I am really into sharing today, a special needs mom shares her heartache on Serendipity.

One more interesting link for you, The Amazing Art of Disabled Artists.

Father’s Day Cards All Around

The boys and I took advantage of an event with PIC while John was working very long hours.  Off to Hope Hospice in Fort Myers for pizza and art.
Surely all of you are jealous that we spend our social time in a hospice conference room!  It is not exactly social since all of the other families attending spoke Spanish only, if they did speak English they were not going to share it with me.  No, not exactly the outings I envisioned with my children.  Nonetheless, I am grateful.  I do confess I may not make the trip again unless necessary before the evaporator is fixed on the jeep.  OK, I’m actually about to make it again and farther for Riley’s PT and a wheelchair repair.  The boys made no complaints as the sweat dripped off them and a thunderstorm threatened to soak us all.  The relief of having someone capable feed Riley for just one meal motivated me to make the drive.
As I ate quietly and watched the boys, I contemplated how important even these few moments are to me.  Without having these few moments of occasional respite somewhere beyond the parents spelling each other helps maintain sanity.
Riley was so happy to be with Miss Debbie P. for awhile he laughed heartily for several minutes.  A group of FGCU students, belonging to P.A.T.C.H. (Project Art Therapy For Childrens Health, coaxed Ronan to take on a paint project.  “What shall we do?” asked Juan.  “A father’s day card,” Ronan answered.  Knowing he already had made a card for Daddy I was curious.  Soon it took shape and receiving some help from Maria he had a wheelchair placed prominently on his artwork.  “Riley needs some help with his card,” Ronan explained.
Quite the oversized card… so I leave you to fill in the missing letters.
Ronan is always looking out for his family.  Such a burden to carry for a six year old.  Yet, to Ronan it is not a burden, he is simply fulfilling his place in his family and does it joyfully.  There was no resentment, no frustration, no sadness that he had to fill this void for both his brother and his father.  I sensed only satisfaction from Ronan.  A few feet away Riley laughed again.
No, definitely not the family time I imagined for my future.  It has its sadness.  But we each find some gratification as well, I still have two magical boys and an amazing husband.
We are all special… by Stacie
Note: P.A.T.C.H. will consider events.  For more information contact Marisa at Meschrei@eagle.fgcu.edu.  I also have a few pamphlets to share.

Opposing Aura’s

The ghostly figures represent Riley and myself in a biofeedback system.  Strangely Riley and I have completely opposite aura’s.  The differences were patiently explained to me at Integrity Biofeedback.  My takeaway is how the difference in our acceptance of God.  Lavender, in the biofeed representation, represents the divine presence.  My aura shows God surrounding me and trying to enter.  Riley has accepted God and is scene within him.  Below is Riley’s aura first and then mine.
I have a long way to go on this journey.
Brenda and Sharron of Integrity Biofeedback have been a very important part of this journey.  When we allowed PIC/HopeHospice into our lives we were blessed with the wonderful presence of Mrs. Lucy.  As a hospice volunteer, Mrs. Lucy made regular visits to our home to take Riley out of our arms for a short while.  She in turn introduced us to Brenda and Sharron.  These engaging women offered to help relieve the frequent and difficult seizures Riley was suffering at the time through quantum feedback.   They discovered very quickly upon entering our home a profound sense of hopelessness.  Truly, at that time no one within proximity could miss it.  They however, made it their mission to aid us in our recovery.
Regular visits to their office have been a very large part of our recovery and self discovery.  I am so grateful for all of them; Lucy, Sharron and Brenda.  We have come a very long way and they are a very large part of our journey of healing.
We are all special… by Stacie Wiesenbaugh

Open the Floodgates

Insulating ourselves against the outside world became a survival necessity during Riley’s early difficult years.  Every movement and noise would send him into a meltdown.  We used ever method we could to shut the world out protecting Riley and ourselves against the intrusion of sunlight, noise and people.  The blinds remained closed all day.  A completely ignored sign requested knocks before doorbells and radios, televisions and conversation remained hushed with the goal of helping Riley learn to sleep.
When I accepted CMS recommendation to include our family in the pilot program Partner’s In Care (PIC), under the umbrella of Hope Hospice I opened the floodgates.  Suddenly our home was overrun by volunteers, nurses, case workers, music therapists and even personal care service professionals.  It was overwhelming after closing the world out to suddenly have constant visitors and questions.  Today was no different.
There were moments of recoil and panic I sensed after that one “yes” I gave to our CMS Nurse Care Coordinator four years ago.  Fortunately, there have been many more moments of gratefulness for all good these people and PIC have brought to our lives. 
To other special needs families still holding out:  I understand all your reasons and they are valid.  When you can though, please open the floodgates and let the sun and noise come back into your life.  You will be happy you opened those gates.
Anyone else catch the Royal First Kiss this morning…. we managed between Ben 10 episodes:-) ?
Readers, please feel free to share any experiences you have had yourselves regarding your special needs experiences.  I would love to share them… email me at oceanantiquities@embarqmail.com.

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