Tag Archives: ESE

Woman in a Tiara

Last Saturday evening an unusual event happened…. John and Iwent 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 Waters Foundation (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 out loud.  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 hertiara 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 Wiesenbaugh

FDLRS Open Lab Nights

PARENTS-
YOU ARE CORDIALLY INVITED TO ATTEND…
FDLRSOpen Lab Nights
Learn how visual schedules can reduce behaviors and enhance your child’s language development and Create personalized visuals and schedules for your child (Please bring personalized photos or family photos with you)
If you are interested in attending an Open Lab Night please contact:      
Jennifer Kuehl or Kristen Emeric for more details.

Jennifer Kuehl, Parent Services Specialist 239- 337-8539
Kristen Emeric, Technology Specialist 239-337-8589

OpenLab Nights are:
March 7, 2012      10 am -12noon    or   5pm- 7pm
April 25, 2012     10 am- 12noon     or    5pm- 7pm
May 9, 2012         10 am-12 noon     or     5pm-7pm

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

Masquerading

At the age of three, Riley began school due to the necessity for intervention services through IDEA.  Once Riley entered the school system’s Exceptional Student Education (ESE) I had the opportunity to focus on Ronan, just a year old at the time.

Santa Cruz Island Sea Lion’s by John Buck circa 2002.

Something happened that I had not experienced in three years; I could freely accomplish a task without the production and worry for Riley’s well-being.  Ronan became my constant companion .  It sounds a little more freeing than it really was because my mental state never stepped away and I was truly exhausted and listened closely for the school calls to my cell phone.  However, this could be valuable time for Ronan  I signed him up for Music Together an entire two miles away from Riley’s classroom.  Eventually we ventured even farther for Kindermusic at Naples Philharmonic.
Is there really such a creature as a “typically developing sibling?”  How can that be possible where the childs’ home life and family completely revolves around the needs of another.
How strange these sessions were to me.  At that time we still took turns to get Riley through every moment of the day and night.  My eyes were so tired I viewed the entire scene through a blur and it took every bit of strength I had just to get us there.  My child laughed and played alongside other children.   I had so little left in me it was a challenge to appreciate those very precious moments of my son’s joy.
Strangely, the other parents in the room did not seem to notice that we had nothing in common with them.  We were masquerading.  We were pretending to be a normal family for those very few moment of our lives.  We were so far from the family we appeared to be.
This feeling of pretense has never left me.  Without Riley by my side I am committing a deception on all those around me.

Day Number Four

This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.
Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.
Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he’s running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment… not very quietly though, lol.  But then, he wouldn’t be Riley if it was quietly.  Even when he’s ill… he is still the sweetest child imaginable.
Still need to get in the laundry for those sheets of Riley’s.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.
 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley’s Smile!  Thank you Maria.

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