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