I Notice

This is one of those morning's when the special needs aspect of my life rattle around my head just a little louder.  May I remind you Dear Far and Between Reader, this is a special needs blog where my intention is to share that the special needs life does not take us down the average path and my vantage point sometimes takes me in odd and frustrating directions.  

Today, I am simply focused on the little behaviors that I interpret as revealing a person as dismissive of those around them or caring.  Now, I must remind myself to not be so black and white or even judgmental because I certainly resent being judged.  So, perhaps I'll just leave this as a bit of a rant.  If we are all lucky, I'll remember this in my own reactions... but don't hold your breath.  As Riley's mother, I get to be Crazy Woman or the term I read recently may be more appropriate, "Dragon Mom."

The day beyond our own walls begins with the arrival of Riley's bus (bus 27127 is quite reliable and calm recently).  It is my neighbors who show incredible disrespect during Riley's pick up and drop off in front of our home.  On many occasions neighbors have passed by the bus while lights are flashing and Riley is loading.  Last May, I fired off an email to my community not even thinking about who the latest lawbreaker may be: I simply knew I was angry and offended.

"Subject: school bus

... it is illegal to drive past a school bus loading a child... yes I see them and will definitely remember their lack of respect and consideration in this matter.  Thank you."

Response:

"I know you are speaking of me as I passed the bus this morning. The red lights flash the entire time the door is open. Your child is being loaded from the house side. There is never anyone on the street side. Are you suggesting everyone sit and wait the entire time the loading process is going on? I will make sure I never leave the community by going past your house again so as to not upset you."

I shared my frustration with another friend and neighbor who seemed to empathize.  This week, same neighbor drives right around the bus with flashing lights.  ?. Shall I take this as my opinion and the law are not as important as your needs Dear Neighbor?  I saw you.  Now what should I do?  Pretend that I did not?

While I was busy ruminating on the lack of respect toward my child, I drove up to Riley's school to collect him for physical therapy.  Being the quiet lunch hour I parked at the front circle, threw open the jeep hatch and arranged the ramp before bringing Riley out to the car.  When I returned to the vehicle, mowers were going all around and it was quite loud.  My focus turned to Riley's happy greeting, removing him from the wheelchair and settling him comfortably in his car seat.  When I brought my head back out from the car I turned to discover the wheelchair no longer beside me. 

What?!  Oh!  There stood Jamie (I'm certain I've mentioned his kindness previously), the gentleman in charge of Rayma's facilities.  He had just dismantled the chair as he had seen me do before, slid the heavy chair into the back of the jeep, folded up the ramp and was closing it all up nice and neat.

How do I react to this?  This is an amazingly kind and sweet gesture.  How many times have I loaded that chair in my own driveway, hugely pregnant and had every male neighbor - and at the time one lived in every house two to the right, two to the left, four across the way - and the only man to ever to rush to my aid (sometimes straight out of the shower and barely dressed was my own husband).  There are some other random individuals to have helped over time and I remember them.  I will always remember them. 

Yes, it's a big deal to me.  Thank you Jamie!  You are pretty wonderful.

We are all special... by Stacie Wiesenbaugh 

Seize the Day! Literally

5:00 am From his hospital bed I hear the familiar intake of breath as a muscle spasm begins.  Switching on the light I discover Riley in a clonic seizure.  Grabbing him up, talking to him, massaging his limbs; the seizure subsides in moments.  Four years ago, this episode could have lasted for hours.  Now with all the anti-seizure drugs he is often able to cease without intervention.

5:02 am On with the day.  After rearranging him repeatedly throughout the night, this meant falling back to sleep and oversleeping.  John and Ronan always rise by 5:40 am.  Oddly, they oversleep as well.  This is very strange. I cannot explain Ronan oversleeping.  John however has been working non-stop and just started trying Valerian Root Tea to help with his insomnia: it appears to actually work.

8:00 am Riley is off on the bus with a new assistant, Antonetta.  Assistant Liz had to cut back on her hours; we are very disappointed.  John and Ronan have already headed in their separate directions.

8:05 Plan for my day: dishes and laundry, desperately needed class at the gym, paperwork, sell some Arbonne, collect Riley from school by 2 pm, Integrity Biofeedback appointment for Riley and myself, pick up Ronan, oh - did I get Riley back into Dr. Stohler's chiropractor routine, riding by 5 pm (we missed last week), is the shower set up for Riley, do I have everything Ronan will need for homework at the barn, are tomorrow's appointments set up, is dinner planned for the late return.... then start it all over again.

8:35 am Phone call from Lee County Transportation.  Riley has suffered a seizure on board the bus and EMS is with him now.  Then EMS/Bonita Springs Fire-Rescue is on the phone.  I must sign in person for the bus to be released from the roadside.

8:40 am Heading somewhere in the vicinity of Old 41 and E. Terry.  How do I handle this now.  Seizure's are part of our life.  Riley has quite a lot of drugs in his system to manage this disorder.  The last neurology appointment, I was instructed to administer Diastat after the next cluster seizure - this must qualify.  However, that window has come and gone.  Riley is ready to go on with his day.  Stimulation is better for him than coddling him.  Yet, Riley is a "hot potato."  Everyone who gets him in their arms tosses him back to mom or dad as quickly as possible.  Do I just take him home to humor everyone else?  No thank you.  Riley needs to live a life.  I need to get a life.  On the way I talk to school's nursing office: I love that office, let him have his day - what do ya'll think the big green frog backpack hanging from the wheelchair full of Diastat  and medical and contact information is for! (no one touched it by the way)

9:00 am I have found them, bus, EMS, ambulance. Screeching the jeep into a tiny little used car lot, I am there.

Camera in hand.  Yes, I have my camera.  These are the moments to record as far as I am concerned and I have missed plenty of them.  EMS spies the crazy woman in ripped gym clothes, uncombed hair, red backpack purse and camera slung around the neck climbing aboard the bus.

I am greeted by a concerned driver, Louis... he spoke at least 20 words this morning, he must have been really nervous.  Welcome to bus 27126 Antonetta!  And then three rather serious EMS technicians.  Loosen up guys, perhaps you've encountered seizure disorders before.  Then of course Riley, still seated in his chair is smiling, laughing, and kicking - just like the last time I tracked down the bus and ambulance.  Good times.

9:10 am.
Sign some papers.
Kisses for Riley. 
Big "Hi" for the little girl across the aisle tugging on my arm.  "Hi" again.  Yes, "Hi, Sweetheart."
Merry waves from the boy ahead in the bus for the men in uniform.
Riley laughs.
Uniformed man stands up straighter and pulls in his chin.
Ambulance drives away.
"HI!"
BIG WAVE!
More seriousness... more laughs.
On your way please school bus #27126.
Oh yeah, swing by the pharmacy for Leviteracetam.  Say yes to drugs.
Where was my day going?  Seize your day, Stace!

We're gonna have our day, darn it!  Stacie Wiesenbaugh

School Begins & Bus Driver Roulette

First day of school begins today.

Most parents feel a sense of relief when their children return to the classroom.  As a special needs mom, I have a dread for Riley, my non-verbal, non-ambulatory child being sent out without me to protect him.

I am grateful as well.  The constant watchfulness of the Summer, the long hours feeding, holding him, providing therapy and being trapped indoors because our Florida heat is too much for my child are finally over.  My guard can finally come down for a moment.  I can linger a few moments over my coffee and return to the gym.  Perhaps find a little sanity.

New 1st and 4th graders.

Curiously, my de-stress became John's stress.  He took this picture because it amused him and had every intention of carrying the load into class for Ronan.  The chaos of the morning left staff demanding parents clear away cars as quickly as possible which left Ronan alone in the gymnasium with his pile of goods.  Now, he cannot forgive himself for not seeing the entire production through, especially given the panic on his child's face as he left.

John's wannabe Facebook post:

John wouldn't post this (even though I said he could) out of fear of my not sleeping with him again (married 15 yrs and disabled kid: like that would happen!)... his draft post:  First day of school and apparently after years of rift the Lee County bus sys. learns.... (John: how was the bus today?) (Me: good, in fact the bus driver wouldn't even make eye contact and barely talked to me) (John: So your reputation precedes you and they finally learned).

We are all special... by Stacie Wiesenbaugh

Daddy Ramblings: First Day of Summer School

8:01 am:  Call from neighbor “Is Stacie OK?”  Yes, I reply, “Why?”  

In response: “I saw her running down the street screaming at a bus in her night gown.”  

Me: “oh, that, yeah I noticed that too.  First day of summer school. (pause)  Went better than I hoped for.”… some time earlier….

First day of school for a Special Needs kid.  When the bus driver who never dealt with a special needs kid (or protective " mother bear" as I call them) expects kids to be waiting on the corner, even though the route is a specific address, she will do a 30 second count and quickly drive away (bus schedule).  Bus pulled up, Stacie sees it and promptly finished brushing Riley’s teeth.  Started to wheel him out/at door 15 seconds later.  Bus starts to pulls away.   

Stacie looks to first person she sees Ronan (younger son),  “Watch Riley” who then looks to me (Dad standing next to Riley~!?/chopped liver?... Ronan's expression is like "watch him do what?") I tell Ronan I will be taking him to summer camp late. 

In her momentum Stacie starts to exit with wheelchair in hand (at door!!) and quickly is out (The Greeks really should have used a wheelchair for a battering-ram). The door flies open.  Stacie is off. The bus is off.  Third time in my marriage I saw my wife actually run.  Bus pulls away.  Ronan, Riley and I standing at the door:  Ronan asks “what is mommy doing?”  I sip my coffee as we all look out the door.... Stacie (running), bus (driving) and curious neighbors (standing) on street... and I reply “being mommy.”  So begins the first day of summer program.

Again, better than I hoped for as far as first day of summer school goes.

--
John Buck
Facebook: The Shark Tooth Guy

Let's Play Bus Driver Roulette Again

Tuesday I discovered an actual message on my phone from the ESE Supervisor for Lee CountySchools Transportation.   Someone from the Department was calling me without my even  making the first phone call. 

This could not be good news.  And so I heard it... for the sixth time this school year they were changing Riley's bus driver.  "This will be Mr. Dave's last day.  He is retiring at the end of the work day today..."  My eyes were growing wider with every word.  The caller had already anticipated my reaction.  "Sheryl in our office has made arrangements for Krystal to return as your driver."  Oh, thank goodness.  They already knew that Momma Bear needed some appeasement.

When the bus arrived Mr. Dave was met with camera and lecture for not letting me know sooner.  I have been grateful for his pleasant ways and caring manner with my son.  Most of the time the people are wonderful... but I still believe that ESE buses need a little extra attention to staffing as I mentioned previously.  However, I have discovered it is a behemoth organization with very high walls and are dealing with a poor economy just like the rest of us.

Wednesday morning arrived... without Krystal.  Thursday morning arrived and still there stands a substitute.  We miss Krystal.  At least they did not send us back those two from last September.  So, as long as the bus system can send us reasonable drivers who can at least greet my son and watch over his well-being  while in their care I can handle the Bus Driver Roulette game.

Happy Retirement Mr. Dave!  Riley and I wish you well.

We are all special... by Stacie Wiesenbaugh

Driver #5

Lee County Public Schools Transportation's Driver #5 is very nice.  I feel comfortable with him at the wheel of Riley's bus.  I do maintain that the Transportation Department should be called upon to consider the ESE bus assignments carefully.  If they ever allow me to speak to them, I will have to ask about this.  They are charged with the safety of my child, not my mail.  I consider it only appropriate that they be capable of communicating with the student's parents. 

Came across Ten Coping Strategies for Crisis by Linda Cole this morning on the parents forum Support for Special Needs.  It is a good reminder on keeping us balanced during the crises we each go through with our children.

Bus Driver Roulette

This year we began with two miserable human beings as Riley's bus driver and assistant.  Every morning I felt sick to my stomach when I handed him over to them.  A simple "hello" was completely beyond them and I always wondered how if Riley received any aid at all during the long trip.  When he returned home his head was often stuck underneath the head rest.  They did not care.  There will be "more on this later" to uncover the transportation story.  One day substitutes arrived with great big smiles and "hello's."  They misery women had "bid" off the bus and I danced in the street.  Thank you, thank you for taking this on with great big hearts!

What I didn't understand at the time is that as substitutes these two had to be switched out every time someone else with higher status made a bid.  Our busload of special needs children are going to find the driver changed for the fifth time this year come Monday morning.  I also have no power.  The Lee County Public Schools Transportation Department on two occasions in the past 4 years has only twice even attempted to discuss my son's transportation issues.  I've sought help from every source in the school system but it appears that Transportation is completely isolated and insulated from addressing any concerns.

They have their systems and must abide by union rules, etc.  However, I do not understand why they cannot even communicate with the parents of their very precious cargo.  They are delivering a child... not my mail.  Which by the way, my husband wonders why I would even attempt to take on Transportation and declares I may as well take USPS to task.

Monday morning we lose Krystal.  I am grateful that for a little while Riley had a driver who truly cared about her charges.  It may well be that the new gentleman will be just as wonderful.  It may also be that he may be just as miserable as the first two.  

Welcome to bus driver roulette.

Anyone else out there have similar experiences?  Anyone fortunate enough to achieve a dialogue with Transportation?  I really would like to hear about it.

Stacie Wiesenbaugh