Tuesday, May 31, 2011

Memorial Day Weekend Shanti Om - Guest Post by Donna Lee

Memorial day weekend, an extra long one with free time, allowing me to come over to visit my buddy Riley and family. Om recognized that we were entering Riley's community and when we reached his street, Om was half way out the window,anticipating seeing his friends.

Mom and dad informed me that Riley isn't exactly up to par, or as we say in yiddish, kvetchy. He and i found our spot on the floor and started to communicate by touch, facial expressions and sounds. What always amazes me with Riley, is how vocal he becomes while I am massaging him, and especially when we are done, feeling the results when i place his calm body back on the rug, cushioned by pillows, His lungs/diaphragm/voice open up, allowing him to vocalize much more. Today he said "om", really!!! 

Om sat beside us the entire treatment, licking Riley as often as he could. Riley grabbed Om's leg and tail, not
a flinch out of Om, just peace and quiet.. . 
Today I used the Arbonne Seasource 5-in-1 essential oil. WOWOWOW. All of the senses were stimulated by the amazing aromas,resulting in the looser muscles and relief. There is a looooooooooong list of oils in this mixture, but the most dominant are my favorites, lavender(calming), pepperment (great for the breathing and tummy), citrus. The base is made of sunflower seed oil, safflower, jojoba, hazzel and canola. So, you can imagine the effect it had on both our senses, leaving us both very "shanti om".
That inner peace didn't last too long after hearing Ronan take a dive into the pool, resulting in an explosive belly flop,and a few tears. Stacie, Riley and I sat at poolside enjoying each others company, a few moments of friendship and bliss. 

My hopes are that Riley will get over his kvetchy'ness, that he and  his family will have an enjoyable weekend. 

My heart goes out to anyone who lost a family member serving his/her country. My thanks goes out to anyone who serves to protect us. That is what this weekend is all about.

Shukaryia, toda, thanks

Sunday, May 29, 2011

Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gatherered already she now has some added issues to deal with lately.  I greatly appreciate Christine's willingness to share their past couple of weeks.  Stacie

It has been a crazy month...(some of the days/times run together in my mind, but I'll do my best to explain). Kaetlyn's journey into womanhood...

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out "normal," but we decided to start her on birth control to help with the hormones....
About one week later we were AGAIN at a loss of the extreme "behaviors" we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her :(  By this time, I was at my whits end...I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinanalysis and strangely decided to do a STREP test. We started with the STREP test and while it was "processing" drew the blood work...before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it....POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! ...
2 days later I get a call from the teacher that Kaet had a GREAT day :), but my "little girl" had become a "little woman" YEP, the birth control/hormones had apparently given her the "push" to start her period. That wasn't too bad that weekend we took it easy and stayed close to home since I had no clue what to expect....then came Monday. 
I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space....the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! :( It was like something was inside her nagging and irritating her...
The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet's gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results...before the Doctor even walked into the room I could hear her outside the door saying, "I would be in pain if I had that!" - apparently she was speaking to an intern. She came into the room and explained to me that Kaet had "free fluid" in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! ...there was no way I could go through a couple weeks of what I experienced the day prior!!!! 
Kaetlyn above with her mom, Christine, graduates 8th grade last week.

She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 
Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can't talk to me I felt it best to go on...
We started yet again with the blood test and urine test (what an "adventure" it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn't give it to her that way. feeding tube time! (NOT) I didn't have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn's :( I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and "surprise" lots of fecal matter too. 
Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 


Saturday, May 28, 2011

b Growing up Different /b

b Growing up Different /b

Beatitudes For Those With Disability

Beatitudes For Those With Disability

I found this article on The Blog Farm and enjoyed it... To Gyre and Gambol:

Reflections on Life, Limpidity, and the Pursuit of Happiness. Thom Brown of Central New York is a Professor of Psychology who has learned the secret of life is enjoying the passage of time.

Friday, May 27, 2011

Seizure #80

Always watching and listening for the next seizure ever since the first brutal seizure on April 21st 2004.  That day is one I never leave behind.
Have I become callous to seizures now?  What a horrible thing to have happened and thank goodness it did.  Some events simply need handling.  This is one of those events we must just get through and do our best to end it without calling for EMS or heading to the ER unless absolutely necessary.  Do understand, seeing Riley suffer is dreadful and seizing is certainly a challenge for him.  When it happens, he needs me fully present and not freaking out because he is hurting again.
It has been five weeks since seizure #79 which has been a long reprieve.  He takes quite a high dose of daily anti-seizure medications which have built up a great deal of protection for him.  He will pay for that protection in other ways down the road when the side-effects begin to take hold. 

This morning had a trigger.  He woke to a strong spasm in his ham string.   The spasm in turn brought on the clonic seize with a violent shake throughout his tiny little body.  All I could do his gather him in my arms and help work through it.  My mind working fast while attempting to bring him relief.  Diastat - no Diastat.  Emergency bag yes - no.  Sometimes the cure can be worse than the illness.  Administering Diastat would have ended his day and brought on complete lethargy.  He may not learn much in school, but he enjoys his day there and I am not going to take it away if I do not have to.  Somehow, we ended that seizure in two minutes and we carried on with our morning routine. For Riley, a two minute seizure is hardly worth noting.

Riley is an amazing child.  He goes through so much.  He recovers as best he can and gives me that smile that says he knows I try.  Off he goes to school and it will be much as every other day.

We are all special... by Stacie Wiesenbaugh

Wednesday, May 25, 2011

It's good... Guest Post by Ronan

It's good to have a special need brother.  And...  He's a very special brother to me.  Ronan (age 6)

Touch of a Child

Touch sooths us.  Touch is a physical display of our love.  Touch is painful.  The human body aches for the touch of another.  The touch of my son brings an array of emotions rushing through my mind.

A NICU parent learns within moments that our gentle touch overwhelms our preemie child.  My first reach toward Riley received quick warning from the nurse guarding Riley, "You must touch him firmly."  This is my baby.  He has been through so much when only hours old I needed to convey my love.  My first gentle touch met with shudders through Riley's 4'8" body.  The NICU parent learns very quickly our touch must be firm from that very first moment.  It is the firm touch that our child needs.

We are all special... by Stacie Wiesenbaugh

Monday, May 23, 2011

Top 10 things relating to disability etiquette

Top 10 things relating to disability etiquette

U.K. Arbonne

I am so excited about Arbonne and would appreciate your willingness to do me the favor of listening to a recorded call that explains what the business is about and to read a few success stories of people in the UK.  There is SO much potential over there!!!!  My goal is to gather referrals for individuals who may see the benefit of Arbonne's pure, safe and beneficial products and the amazing new opportunity. 
The opportunity call is recorded and now available 24/7!!!
Playback Number: 00-1-(641) 715-3413
Access Code: 755523#

Eye on Arbonne success stories are attached.
United Kingdom EOA #1
United Kingdom EOA #2
United Kingdom EOA #3

Should you wish to learn more about Arbonne please feel free to contact me to set up a time to talk, see contact below.  Please allow me to work with you should you pursue this opportunity.  I am excited to take my business to the next level and your support and your future means a lot to me.  Thank you!!

My contact information:

Stacie Wiesenbaugh
Independent Consultant #18425803

Arbonne International, www.arbonne.com


Sunday, May 22, 2011

A Moment to Breathe

My greatest challenge is simply the constancy of being a special needs mom.

John, my husband, would prefer that I not use that term, "special needs."  Everyone has their issues and he is correct.  I see this one issue as unique and something which should certainly be address.  We have one special needs child and one typically developing child... there is definitely a difference in raising the two.  For instance, Ronan, the typical child, is out at a Pokemon Tournament with "Kappy" (my mom Kathy).  John is fossil diving  in preparation for a presentation tomorrow morning at The Village School.  Riley is naturally right beside me.  

Riley has been right beside me all day and all night.  He requires constant vigilance.  Even as I write this post I am half aware of my task while I watch and listen to his every breath.  He is working very hard in his stander, because as you may remember that is very important for his well being.  This is however, my moment to breathe as he is not actually in my arms at this moment nor am I holding his hand while he sits beside me.  Only recently have I gained these precious moments and I remember all too well what it is like to exist without them.  We have come very far... especially Riley and I am proud of his amazing achievement to be able to process and live in this challenging world.

There will be more on this... I am not really certain how to communicate this constant alertness.  Fortunately, as I mentioned before, this is a blog and I have time.   Though I was kind of looking forward to the end of the world yesterday... oh well, guess we keep on going!  Perhaps there is another parent out there who knows how to explain this who may be willing to share?

Better go now... he has been in that stander long enough and must be quite thirsty by now!

We are all special... by Stacie Wiesenbaugh

Saturday, May 21, 2011

Watch ABC or NBC tonight at 6:00pm. NEC made the News!!!

Southwest Floridians Please Watch ABC or NBC tonight at 6:00pm.
NEC made the News!!!

News reporters came to NEC this afternoon during lessons.
Watch and see – TONIGHT (Saturday, May 21st)
Naples Daily News
206 Ridge Drive Naples, Florida 34108
Tel:   + 1 239 596 2988
Fax:  + 1 239 514 2908

Friday, May 20, 2011

Wednesday at NEC - by Donna Lee

After receiving a call for help, "Leaders needed on Wednesday afternoons", of course I replied positively.
No volunteers, the kids don't ride. Its as simple as that.
It's a very tiring work afternoon, no rest, even a potty break is quickly taken and back to the ring. The riders are mostly independent and it is a pleasure to watch them tack the horses and ride with ease, some with no side walkers.
I prefer side walking because of the interaction with the riders. It is such a pleasure to be able to 
converse, laugh, joke, and listen to their hearts and words of wisdom. as a leader, you concentrate on controlling the horse. Well, it is very difficult for me to keep my big mouth shut and find myself chatting, laughing andgetting teased by the riders, especially when Ted nips at my arm, sending Vanessa into rolling
laughter. My motto is, "if I make you laugh, I am happy". Fortunately (and unfortunately) we are so understaffed on Wednesday afternoons that I am not "busted" for conversing with the participants.  
I leave the ranch exhausted but my soul is light and totally bursting with pride from all the great riders, the commaradity of the volunteers who always seem to pull it off, no matter how understaffed we are. Watching sara, our scholarship girl from the Derby Fund Raiser, tacking Dotty totally solo, watching John, our Special Olympic's champ,  prepare Ted for his lesson and our leader, Debbie, and her calmness preparing Buddy, knowing that we will manage and all the riders will have a great afternoon. 

Wishing everybody a great weekend,

Thursday, May 19, 2011

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

Tuesday, May 17, 2011

Beginnings and Endings

Six years John and I lived the two career couple married life.

Six years.

Six years of love.  Six years of supporting each other, learning about ourselves and our spouse, building toward a strong future, creating a home, a social network, careers, investing in causes we believed in... John enjoyed rollerblading... I roller-bladed (sometimes I stayed upright).  I wanted to contribute... John organized beach clean ups with me and trekked to the Wildlife Waystation each weekend.  John wished to dive... we earned our PADIcertification, I received the advanced certification (just enough to go most places we desired to go) and he continued through to a rescue certification. 
Above, John at the Santa Barbara Harbor.

Those six years were difficult, challenging, amazing and loving.  I frequently revisit those years in my mind... the good and the bad.  The relationship we built in that time is the foundation we live upon now.

One day I felt different.  It will go away, I am just not feeling well I told myself.
I believe this was taken on Henry's Beach.

It did not go away... I was pregnant.  In that moment our life and who we were were forever changed.

Planning Seminar in Fort Myers

Monday, May 16, 2011

May we serve our disadvantaged brothers and sisters in their need as well as they serve us

My niece, Stacie, has asked to share some of my experiences in regard to mentally and physically disadvantaged persons.  My experience is not particularly large and certainly Riley, Stacie’s oldest child, is the most physically disadvantaged person with whom I’ve had any extended relationship.

What have the mentally and physically disadvantaged persons I’ve known taught me?  First, two disadvantaged persons I knew in my boyhood years: Peggy C. and Roddie S.  Peggy was an older sister of a grade-school classmate, David.  When I visited David, Peggy was there.  She did not talk much; she was just there.  I saw how this large family accepted and cared for her.  I thought about who would care for her when her mother and father were no longer able to do so.  Peggy was there; and I could not escape her.  I had to learn to relate to her.  And this to my mind was a basic, necessary learning experience for me.

Roddie lived on the same block that many of my grade/school friends lived and played.  Oftentimes we would play touch football on the street of this block.  And sometimes Roddie would emerge from his house and want to play with us.  I learned to respect Roddie from my friends as they sometimes (not always!) found a way to incorporate Roddie in our play.  And I can remember how thankful Roddie’s mother was when she appeared at their door to welcome a very excited Roddie back into their house.

Mrs. Betty M. lived just three houses away from our home during my grade school years, but by the time I was in high school, as I understood the situation, she lived most of the time in a mental institution or home.  Her husband, Jack, had to raise their son, Richard, who was about 4 years younger than I effectively by himself, for Betty was allowed to return home for only a-few- days stints several times a year.  I remember how quiet and frail Betty was, but was particularly struck by the devotion and faithfulness of her husband, Jack.

Peter is a fellow member of my religious congregation, The Society of Jesus or Jesuits.  Peter is an outstandingly talented person; the kind of person who gives the impression that nothing was beyond his talents and energy to master.  Yet, one day during that one  year that we lived in the same community his mentally disadvantaged brother appeared.  Then, I saw Peter’s great love and respect for his brother, but also his deep confusion over whether he should support his brother in his desire to marry. 

Below, Uncle Bob presides over my niece Jasmine's baptism.

Disadvantaged people bring us back to recognizing and living our humanity, and this is a lesson, a teaching, that we all must learn.  May we serve our  disadvantaged brothers and sisters in their need as well as they serve us.
Uncle Bob with niece Jasmine and nephews Hayden and Ronan, Hudson, NH, May 7th, 2011.  Taken by Aunt Julie after Hayden's First Communion.

Thank you for sharing today Uncle Bob!

Is Rejection Painful?

New York Times:  Rejection May Hurt More Than Feelings.

Many special needs children and their families understand this all too well.  We are always on the outskirts of society.

I am reminded today that I had a Great Uncle Who Shall Remain Nameless.  He remains Nameless not because I protect his identity.  He remains Nameless because no one would introduce him even to relatives or mention him... I learned about him by chance.  He was special needs and unwelcome even in his own family.  I feel pain myself when I think of how he must have suffered alone.

We are all special... by Stacie Wiesenbaugh

Sunday, May 15, 2011

Friday evening on the Princess with Freedom Waters

The weather on Friday evening was perfect, making the waters calm and the skies beautiful from aboard the Naples Princess. This is my first time "cruising" with Freedom Waters. Knowing many of the volunteers from different venues, I felt right at home. Stacie and the gang joined us, including Grandmom Kathy.  Ronan was full of energy and excitement, charming, as always.

Riley was very comfy on mom's lap, sipping on his almond milk, interrupted by leg tremors, that were obviously painful, seen on his face and felt in the raised muscle tone. After massaging a flexing his little foot, he found some relief.

Ronan proceeded to investigate the ship, discovering the upper deck. The view was magnificent, especially when the sunset and the stars began to appear and glow. The summer breeze was comforting and the happy sounds of the group filled my heart as we were gliding on the waters with ease and breeze.

We headed back to port and our two tired boys needed to go home and be put to bed. The excitement and sea air tiredus all.  Being on board with the sailors was a pleasant first encounter for me. I am looking forward to next season and being out on the waters with Freedom Waters, watching the participantsfaces and bodies react to the pleasures of boating.


Friday, May 13, 2011

Opposing Aura's

The ghostly figures represent Riley and myself in a biofeedback system.  Strangely Riley and I have completely opposite aura's.  The differences were patiently explained to me at Integrity Biofeedback.  My takeaway is how the difference in our acceptance of God.  Lavender, in the biofeed representation, represents the divine presence.  My aura shows God surrounding me and trying to enter.  Riley has accepted God and is scene within him.  Below is Riley's aura first and then mine.

I have a long way to go on this journey.

Brenda and Sharron of Integrity Biofeedback have been a very important part of this journey.  When we allowed PIC/HopeHospice into our lives we were blessed with the wonderful presence of Mrs. Lucy.  As a hospice volunteer, Mrs. Lucy made regular visits to our home to take Riley out of our arms for a short while.  She in turn introduced us to Brenda and Sharron.  These engaging women offered to help relieve the frequent and difficult seizures Riley was suffering at the time through quantum feedback.   They discovered very quickly upon entering our home a profound sense of hopelessness.  Truly, at that time no one within proximity could miss it.  They however, made it their mission to aid us in our recovery.
Regular visits to their office have been a very large part of our recovery and self discovery.  I am so grateful for all of them; Lucy, Sharron and Brenda.  We have come a very long way and they are a very large part of our journey of healing.

We are all special... by Stacie Wiesenbaugh