Woman in a Tiara

Last Saturday evening an unusual event happened.... John and I went 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 WatersFoundation (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 outloud.  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 her tiara 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 Wiesenabugh

Medicaid Covers Diapers, Still Great News Worth Sharing!

MedicaidCovers Diapers!  As well as programs which mirror Medicaid such as Title XXI which currently serves Riley for children who qualify.  Yes, some of you are saying to yourselves, "this is old news, where have you been?"  Some others are wondering  if I have lost my mind, because battles have gone on for years over diapers and not gotten anywhere.  Finally, in 2010 the complaintants started to win!

"Disposable Incontinence Diaper Coverage 

Effective September 1st, 2010, Florida Medicaid has begun covering disposable incontinence diapers for children ages four (4) through twenty (20). While we finalize the promulgation of the coverage and limitations criteria for these products through the Durable Medical Equipment and Medical Supplies Coverage and Limitations Handbook, please open and reference the Policy Criteria for Disposable Incontinence Briefs, Diapers, Protective Underwear, Pull-Ons, Liners, Shields, Guards, Pads, Undergarments"

Why, you ask do I mention this now?

Well, I'm glad you ask!

Diapers.  Perhaps as a parent of typically developing child you bemoaned the cost of diapers.  Imagine a lifetime of purchasing those diapers in an ever increasing size and amount.  For my family, just a year ago, it was becoming impossible to meet the monetary demand and even just having  the great supply needed on hand.  It was one of the many expenses of having a special needs child that could not be brought under control.

This past week I discovered just how easily special needs families may be left out of the loop.  First of all, If your special needs child is older than three years old, you are already well schooled in the fact that Medicaid flatly has refused to cover diapers and supplies for years despite continuing court cases leveled at the organization.  When finally, Medicaid was defeated in court, they did not go to all their consumers and invite them to purchase diapers on them.  I had opportunity to spend an afternoon with another special needs mom.  In conversation, she mentioned her stress about diapers and needing more.  I let the mention pass the first time thinking she was recalling the financial stress of diapers from last year at this time.  The conversation returned again to diapers.  Yes, diapers is a popular subject among the special needs caregivers... little wonder.  The next time we spoke of diapers I did say something about the relief she must have not that Medicaid covers diapers, knowing her son had the coverage.  The look on her face stated clearly that I had lost my mind, everyone knows and has always known that Medicaid will not cover diapers.  Yes, I told her, it does now.  Immediately, we pulled up a medical supply company and made a request.  By the end of the day, 200 diapers were to be shipped out to her front door courtesy of Medicaid.  I do believe she was close to tears for the sheer emotion of this change by the time I left her.

Special needs families are so easily isolated.  They do not sign up and involve themselves more than necessary.   It takes all of their energy to simply get through the day.  This describes my family as well.  So, I asked myself, how did I know about and take advantage of this incredible news?  Then I remembered.  Riley's PIC social worker had made the announcement to us and I took advantage of it that very day.  I do believe my response was a wild dance in the middle of my living room.  Now I hoard diapers everywhere, when our entire supply is not used in one months' time, I hide it for later.  Our country's budget problems is something I am keenly aware of and I am not going to be suddenly caught without diapers if I can help it.   How fortunate we are to have an organization looking out for our interests.   

The stash beneath Riley's hospital bed.

How unfortunate it never occurred to me to share this amazing news one year ago.  So, who cares if you sound foolish, it is so easy for special needs families to miss important news: Go tell everyone you know that "Medicaid Covers Diapers!"  Someone out there is going to be indebted to you for this little statement and very great news.

Please go out and share the news.

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 of a 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 on to 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.

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.

Florida Governor cuts Medicaid Budget by15%

More news of budget cuts in Florida may be constantly in the air and nearly mind numbing with all the information there is to absorb.  This past week the Florida Governor applied emergency cuts to the Medicaid programs. (http://apd.myflorida.com/news/news/2011/emergency-rule-filing.pdf ) I can barely take it all in.  15% cuts will be applied across the board... surely there are more appropriate methods.  What I do know is that it is personal to my family.  We feel these cuts in our daily life. We felt it with Medicaid which aids special needs.  Medicaid comes and goes for Riley inexplicably... and is always pulling back and I am certain it is all about preserving their budget.  Please do not attempt to explain why this happens to me, I've heard the simple explanations and in reality no one really grasps this behemoth organization.  All of this is really more than I have energy to go into this morning.  All I know is that Riley's services are increasingly difficult to maintain.

The loss I truly fear is changes to Partners In Care (PIC) which is supported by Medicaid funds.  PIC is a pilot program in Lee, Hendry and Glades counties through Hope Hospice for children with "life altering" illnesses and their families.  They came into our lives when I was truly at the end of my rope.  I had nothing left, this is not an expression, it is a fact.  Their program came in and added services for Riley that helped turn our family around.  As far as I am concerned, they saved my life.  Budget cuts like the one enacted this week may prevent this amazing program from being there for other special needs families.  Yes, it's personal to me.

Below is Riley with his Dad.  They are so beautiful!

Thank you to all those attending the "Tally Rally" in Tallahassee today!  You all do so much for this community.

Easter Seals request: With the help of supporters like you, we are sending a clear message to President Obama that the $50 million funding increase he proposed is appreciated, and that it's essential it stays in the final budget.