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

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, my child, 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

Appointments and Illness

There is so much I have planned for this blog and so much I want to say... However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it's controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I've done it and I don't like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley's parents - yep, that's John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today - in fact, I am unsure when I care to get into this.  For now, let's leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not...

The special needs community frequently uses the phrase "a bullet is a bullet."  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, "Wow, she's easy to work with!"  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important.  When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.

This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.

We are all special... I think... though I complain and want to compare bullets with you... 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

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.