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 

Maggie World: Luxuries

Maggie World: Luxuries: There are so many worries when one is a parent. So many. All of us want the best for our children and all of us worry and fret over roadbloc...

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

Tender Foot Meet Orthotic

Bony little feet sounds like something we all may want.  If you happen to not walk, does it really matter?  Riley and I are discovering that yes, it does matter.  It matters because of the great benefit of standing.  Without use in the early years of life, the foot develops without strength, size and flexibility.  Several months ago, I debated the reasons for Riley to continue wearing "AFOs" (Ankle Foot Orthosis).  Previously I had mentioned the tender skin on Riley's feet.  Since he never stands or walks, he has no calluses upon his feet.  Without any callous any footwear rubbed and his skin was quickly breaking down.  This situation is naturally unacceptable.  After going back and forth many times and trying to adjust these devices to not cause injury, I was pretty much done with AFOs.

Now I send Riley to school sans shoes.  Yep, aren't I the "crazy woman" asking for trouble.  Challenge me on that would you.  Most everyone respects my choice... or should I say has remained silent.  Who is really going to argue that this sweet child in the chair must have foot coverings?  School or not.  Well, challenge I get, because he does need support so as not to collapse in stander.  Standers are so very important.  So, the school PT has her priorities and I have mine.  Back to AFOs again.  But this time she arranged for an Orthotist to see Riley at school.  Relief!  No making an appointment.  No loading the wheelchair and Riley, no long drive, no long fitting, reload, going again to pick them up... on and on.  The Orthotist came to school.  What a great way to go.  Why didn't we do this the first time around?

We are all special... by Stacie Wiesenbaugh

A page from EasyStand.com

Health Benefits of Standing

Individuals who rely on a wheelchair for mobility should also look to a standing device or standing frame as a way prevent the secondary complications that often result from prolonged use of a wheelchair. For years physicians and therapists have recommended assisted standing for a variety of medical and health benefits that occur when maintaining a natural standing posture. However; in addition to the physiological health benefits, many people also experience significant psychological benefits from being in the upright standing position, such as improved self-esteem and social development.
Many of these health and physiological benefits of standing are listed below. Or you can review any of the clinical case studies, articles, and research studies found on additional pages for further assisted standing benefits and information.
Medical Benefits of Standing
Passive standing has been demonstrated to prevent, reverse, or improve many of the adverse effects of prolonged immobilization.
The most widely accepted medical benefits of standing include:

1. Prevention of contractures (ankles, knees, and hips)
2. Improvement of range of motion (spine, hips, knees and ankles)
3. Reduction in spasticity
4. Prevention or reversal of osteoporosis and resultant hypercalciuria
5. Improvement of renal function, drainage of the urinary tract, and reduction in urinary calculi
6. Prevention of pressure ulcers through changing positions
7. Improvement in circulation as it related to orthostatic hypotension
8. Improvement in bowel function
9. Normalization of respiratory function
10. Improve Hip Integrity
11. Develop or improve motor skills
12. Maintain or re-gain bone density

Other specific reasons that people stand include:

• Facilitation of a natural symmetrical standing posture
• Development & improvement of upper body balance & strength
• Alleviation of pain caused by prolonged or inappropriate position
• Development of standing tolerance & endurance
• Lessening progressive scoliosis
• Assisting with skeletal development (in children)

Psychological Benefits of Standing
Although funding sources rarely recognize the psychological benefits of standing, they can be some of the most important reasons to stand, especially for kids. Clinicians, parents, and EasyStand users also recommend standing for the psychological benefits, including:

• Stimulate play
• Increase independence & self-image
• Being active and mobile while standing
• Be more alert
• Increase cognition
• Enhance social development & interactions with peers
• Participate in activities that are meant to do standing up
• Increase activities of daily living
• Be more vocal & responsive
• Look peers in the eye
• Give & get hugs easier
• Encourage inclusion in school
• Decrease fatigue from inactivity
• Help prevent depression

Here It Comes Again

My need to document proves that "crazy woman" is still here.  Cannot imagine that this subject will be found covered in many places as the subject today is rather distasteful.  Oh right, I remember now, my entire subject is rather distasteful.  I will make this rather brief, because mostly I am simply tired today.

After Riley had a good morning, he was disinterested in his lunch.  If you know Riley, you know he has a tremendous appetite.  It wasn't long before he began vomiting.  Vomiting is stressful for all children, however having a typically developing child and a special needs child I can tell you with certainty that it is entirely a different experience with special needs.  There is no warning.  It is projectile.  It is frequent.  It will be everywhere - everywhere! on the walls, down your bra and panties, in his hair, soaked in the carpet, on the opposite side of the house... you may be getting the picture but I'm not so sure.  After  cleaning up as fast as possible, stripping everything, starting the laundry machine as it will be going continually, attempting to cover everything in towels, washing him and getting the child upright in an attempt to quiet the next episode it will begin again.  And again and again throughout the day.  By the way, this really requires two adults be present to make it happen at all.  Fortunately, John was home and he moves fast.

There was an indication the evening before.  Leg tremors.  After these episodes the leg tremors really take over.  In my arms, I support him upright on one side and with the other attempt to pull the balls and toes of both feet toward his shins.  Barely four inches remain between shins and toes once the tremors are relieved.  Then we wonder if this effort to relax the tremors puts added stress on the abdomen.  Release the legs.  These tremors increase to.... my guess, about 40 beats per second - only because I cannot imagine it being higher than that.  His feet move like a film in high speed when the film has spun free from the reel.

Move into "tonic posturing" and eventually a seizure.  I think I will reserve those for another day.

The most amazing part of all this is Riley's sweetness!  By the end of the evening he has lost all of his night medications which means sleep will be impossible for all of us.  Medications and sleep drugs will most definitely be a frequent subject.  The moments in between the vomiting and severe tremors... would you believe he smiled at me and talked in his sweetest manner. 

He was positioned all night so that I could maintain a hold to relieve the tremors.

It is so difficult to see my child experience this.  I suspect it is even harder for John when I catch his expression.  These episodes are also one of our hot button issues because of the history - naturally there will be more on this later.

Does anyone else out there experience a similar situation?  It's still a challenge to get through.  To anyone who actually bore through this post... thanks for listening!

The picture below is one of the Ronan's family portraits that teachers insist upon.  Do they know the heartache this little exercise brings?

Also today please note this piece of news which will bring more difficulty to our lives... Florida Governor cuts disabled programs.

By Stacie Wiesenbaugh

April Fool's in a Doctor's Office

It is a beautiful Saturday morning.  John is at The Market on Goodlette Frank selling fossils as The Shark Tooth Guy.  We are hoping for a busy turn-out as the other farmer's markets close down for the season.

Took  Ronan in for a dermatology doctor visit.   Since I must bring Riley along there was the great production of making sure he was well  fed and comfortable, pack up with anything he may need such as clothes change or diapers, then load up Riley's many supplies.  Then I use the heavy ramp, disassemble the wheelchair and fit it in the back of the jeep.  Carefully place Riley in his seat.  Ronan, must just bring himself, load and buckle himself.  Reverse everything on the other side when we arrive in the parking lot for the medical building. 

As I do all this and others arrive long after, file by and sign in to be seen before us.  This is no one else's fault, but it gets to me anyway.  My time is just as valuable.

It does remind me however, that there are countless instances when I do have legitimate reason to be annoyed by the other clientele coming and going.  One memory stands out above the others.    A visit to Dr. D. Perlmutter's office in a beautiful medical building in Naples.  After going through the production and finally arriving inside the quiet open foyer.  Keep in mind, at the time Ronan was just a baby and I held him in one arm while pushing the wheelchair with another.  We must have been difficult not to notice yet everyone did.  I located the single elevator and positioned us a few feet in front of the door in the event people would be exiting.  We were not so easy to maneuver so I usually try not to be in the way.  We waited longer than expected and found that many people entered the building just after us and wanted the elevator as well.  We were in the middle of a large crowd when we had started alone.  The doors finally opened.  I do not even remember if anyone stepped off.  I do remember very well that the entire crowd surged around me, piled in to the elevator, turned to face me - each with a stone-faced expression - with no room left and allowed the doors to close before I could even move.   Would you believe, it happened again.  The anger  I felt sent heat to my face and I felt my pulse rising.  The next load I shoved us, Riley - chair - baby and all through the crowd onto the elevator .  The individuals there at that moment were certain to dismiss me as a crazy woman.

Yes, this really happened just as I related the story!  This scenario has repeated many times to various degrees.  Please help me to understand why this happens if anyone has insight?  I welcome your comments.