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The Charity Register 2010

BEST OF > The Charity Register 2010
Your guide to great causes along the gulfshore.


Author: Jennifer Freihofer
Photographer: Brian Tietz

As the horse breaks into a trot, six-year-old A.J. sits up straighter, tosses his helmet-strapped head back and bursts into a contagious giggle. His parents, Michon and Angel Chamorro, laugh from outside the covered riding arena. Then, A.J. leans forward onto the pillow that supports him in the saddle.


Away we go!: Volunteers Brittany Reynoso (left) and Christiane Daniel (right) help six-year-old A.J. Chamorro as he rides Spot at Naples Equestrian Challenge.

At Naples Equestrian Challenge, A.J’s time on the specially trained horse, surrounded by certified instructors and volunteers, is a form of physical therapy for his cerebral palsy. His parents say it’s worth the drive from Estero to see his upper body strength, posture and vocals improve. Plus, his dad says, he absolutely loves it. “Every time he hears the word ‘horse’ or sees a picture, he’s pointing,” Angel says.
Each week, the program serves more than 100 children and adults with developmental delays caused by disabilities ranging from cerebral palsy and Down Syndrome to stroke and amputations. Another 40 to 50 riders participate in mental health activities for autism, attention-deficit disorder and more.
Melissa Caffey, Naples Equestrian Challenge’s former executive director, says most participants are on scholarship and ride about 40 times a year. They are charged only $10 per half-hour session, although it costs the program between $4,000 to $5,000 per rider.
Stacie Wiesenbaugh of Bonita Springs brings her son Riley Buck, eight, to ride. He was born with a brain hemorrhage that caused cerebral palsy, spastic quadriplegia, hearing and visual impairments, and other complications that require him to be strapped to the horse. She remembers their first visit. “The wind was really blowing,” she says. “The smell of the barn hit him, and he started laughing hysterically and wouldn’t stop. It was like this place was the right place for him. There are very few opportunities for him to participate in anything and enjoy himself.”
A.J.’s dad appreciates all the hard work put in by the 270 volunteers each week. “I think it’s nice to see people take time out of their lives to help kids that need it,” he says. “It’s a great program. I hope it never ends.”
Naples Equestrian Challenge is one of so many worthy charitable organizations throughout Collier and Lee counties. The list on the following pages provides the goals of 267 organizations and offers ways for you to get involved along the Gulfshore.
—Denise Scott

Take Away

The headlines of recent are too much to ignore, so a post must be written:

Md. mom who killed son agonized over school costs

First, I strongly disagree with the decision made by the mother.  Her son could tell her how he felt; how he loved her; if he was in pain; if he was happy.  I know his pain by his cries.  I know his happiness by his smiles and noises.  She had more of a DIRECT relationship with her child than I will ever have, yet she felt it was not enough.  They referenced debt as a reason she took his life.  I would give everything I own for a moment where Riley could speak to me, or even smile (Riley’s Smile) and know it was out of true joy and not a chemical response to all his drugs or even a fart that was funny (but that would be funny).  So in sum, I disagree with the choice she made.
Still, I know my husband and I have been there.  There are moments in time, too many moments where the decision she made would be the easy one.  My husband has prayed for the end of my son’s pain, as have I, more than we care to or even can share. I think in reading the article there are things that we can all take away from it, whether you have a disabled child or not…
1.)The first “what to take away from this”… Don’t judge others.  If they are carrying “one pound of weight” or “1000 pounds of weight” everyone
is different and over time, it all feels like 100,000,000 pounds.
2.) I saw she was a single mom.  While the article didn’t go into her relationship with her parents, the $10,000 check in the mail was extraordinary.  I am blessed to have a mother who, while due to age cannot hold my child, loves him and supports him in MANY ways.   For many, even if support is there, it is not always enough…The second “what to take away from this”…A small act can go a long way…If you know of a parent of a special needs child, whether married or single, you can ask how they (the child or parent are doing)… This is support.  But, remember, don’t judge… by society (and family) there is too much judgment in special needs kids and families.  Just ask how are you?  and listen.  Being shunned by part of society, is isolating.  Just listening is often amoment of respite/help.
3.) I had mentioned earlier about how her son could communicate and mine cannot.  I probably portrayed this as selfish.  It wasn’t as much that as, honestly, jealously.  Regardless, my “thing to take away”… Appreciate what you have with the one you love, no matter what the occasion…. My husband had a “lost” father (drugs, jail, confused, alcohol, barely saw him as a child).  His dad  too took his life.  Still, after all these years my husband will share many moments he had with his dad.  They were VERY brief moments, during hard times for them both.  Still, good moments.  My third “what to take away from this” is hold on to the moments you have with those you love.
To summarize, she could no longer carry the weight of what she was facing.  She had support but was alone too much, perhaps?  Perhaps no one
truly listened.  I/we will never know.  She felt she could not give her son enough…. what parent special needs or otherwise has not felt that way.
I am looking for an end to this post but cannot find one.  I guess my end to this post is that it is not my last.  The Barnhard family found their end.  My “end” will come when either “special needs” ceases to exist or when I can no longer champion the voices of those with special needs or those who care/love them.
We are all special… by Stacie Wiesenbaugh

http://www.thingsicantsay.com
Blogging Hints Catch a Wave Wednesday

One Little Mister Parenting Blog

My Nephew Tyler Races/Walks for the Cure

I celebrate and share when my family gives me the opportunity…. So here is Tyler once again on the cover of the Aspen Times…. that reminds me to go digging through my scrap book.
This pic I’m attaching I got from online, but it was on the cover of Sunday’s paper here.  Tyler did the5K Race for the Cure with his friend Wilson.  T is sporting a new crew cut in the black Aspen Lacrosse shirt (Chile and he got one last week). Claudia did it too.  We were a part of my friend, Bess’s team, who got breast cancer this year.  It was really fun!

Kara Smart

I have had an aura shift since my last visit to Integrity Biofeedback revealed opposing aura’s.  They tell me this is good, I will have to trust them.

Children Living at Wolfe Apts… naplesnews.com

(Naples, FL) School age children living at Wolfe Apartments were treated to a special camp experience the week of June 20-24th, when they attended the summer horseback riding program offered at Naples Equestrian Challenge. The opportunity, funded by monies raised at the Naples Winter Wine Festival, provided these children, all of whom have experienced the trauma of homelessness, poverty and worse, the chance to ride, groom, and learn about horses firsthand for the first time in their lives. The children enjoyed camp immensely. Five year old Doris declared, “It was fun and Pick-A-Spot (one of the horses) loves me”, adding that this horse had “the bestest teefs.(best teeth)”. Six year old Edgar said, “It was the most fun ever, plus my Mom and Dad came and they said I was the best horse rider they ever saw. I know it made them happy!” St. Matthew’s House is grateful for the help from NCEF to give these children such a positive, educational experience.
Wolfe Apartments, an affordable transitional apartment complex owned and operated by St. Matthew’s House, was built in 2003 and offers a two-year supportive housing program to homeless families and individuals, as well as those who graduate out of the SMH recovery program.
The Naples Winter Wine Festival has raised $94,500,000 in eleven years and is the most successful wine charity event in the world. The Naples Children & Education Foundation, founder of the festival, supports charitable programs that improve the lives of underprivileged or at risk children in Collier County. They are committed making a profound and sustaining difference in the quality of life of children.

This story is contributed by a member of the Naples community and is neither endorsed nor affiliated with Naples Daily News

Also of interest today is an Editorial: Grassroots effort… Children’s Movement of Florida.

http://www.tcpalm.com/news/2011/jun/30/editorial-grassroots-effort-could-bring-success/

My brother is special, and it’s not because of his disability – The Express Tribune Blog

My brother is special, and it’s not because of his disability – The Express Tribune Blog

Thank you to author Mehreen Asghar for sharing this touching post! “I like the idea of this blog as I am a sister to a special needs child. Let me know if I can contribute in any way at all. I wrote an article about special needs children a couple of months back in a newspaper blog in my country.”

You can find more from Mehreen on her blog http://the-perfect-line.blogspot.com/.

Exceptional Parent Magazine Online Seminar for Special Needs Planning

Merrill Lynch and Exceptional Parent Magazine Online Seminar

Merrill Lynch hosted an online seminar on Special Needs Planning in partnership with Exceptional Parent Magazine. We invite you to view the footage from this presentation.

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

www.naplesequestrianchallenge.org

Hatred of Mother’s Day Inspires Positive Project – KETV 7 News Story – KETV Omaha

Hatred of Mother’s Day Inspires Positive Project – KETV 7 News Story – KETV Omaha

Spring Creek Elementary Sensitivity Training

A sensitivity awareness training was held at Spring Creek Elementary for 21 fourth-grade students last week.
The students learned about different types of disabilities and then experienced for themselves what these disabilities might feel like.  They traveled to six different stations where they learned to simulate a specific disability as well as performed an activity to demonstrate what it would be like to have that disability.
The stations included: fine motor disabilities, learning disabilities, physical disabilities, communication disabilities, visual impairments, perceptual misinterpretation, and an equipment station explaining ways to improve mobility and gross motor skills.
Examples of activities include mirror writing, buttoning a shirt with gardening gloves, learning sign language, and manipulating a wheelchair obstacle course while wearing glasses to simulate a visual impairment.
Students also interacted with many special needs peers at Spring Creek throughout the different stations to encourage integration and socialization.
The training was organized and designed by Katie Truxton, the Functional Skills teacher at Spring Creek Elementary, and Mia Wheeler’s 4th grade students were the participants. In addition, many community members and staff came together to become involved and contributed to this important learning opportunity. These members included: Darla Betlach (Occupational Therapist), Priscilla Weaver (Physical Therapist), Theresa Thompson (School Nurse), Stacie Wiesenbaugh (parent of student), Leslie Goldenberg (Speech Language Pathologist) Carol Phipps (Life Skills teacher) and her students, Sandra Magnante (helping teacher), Brandy Harris (helping teacher), Nancy Austin (helping teacher), and Kathy Robertson (helping teacher).
The training was a huge success! Students gained understanding of how hard it can be to have a disability and why it is important to be considerate and kind. They are doing writing follow up activities on their experiences and how the activities made them feel.

A sensitivity awareness training was held at Spring Creek Elementary for 21 fourth-grade students last week.  The students learned about different types of disabilities and then experienced for themselves what these disabilities might feel like.

Photo by Contributed by Spring Creek Elementary
A sensitivity awareness training was held at Spring Creek Elementary for 21 fourth-grade students last week. The students learned about different types of disabilities and then experienced for themselves what these disabilities might feel like.

© 2009 Naples Daily News. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

A sensitivity awareness training was held at Spring Creek Elementary for 21 fourth-grade students last week.  The students learned about different types of disabilities and then experienced for themselves what these disabilities might feel like.

Photo by Contributed by Spring Creek Elementary
A sensitivity awareness training was held at Spring Creek Elementary for 21 fourth-grade students last week. The students learned about different types of disabilities and then experienced for themselves what these disabilities might feel like.

RSV, Not just a danger to preemies

Bonita Springs family still on guard to protect their son, now 5

Sunday, November 25, 2007

Stacie Wiesenbaugh thought she was just having a bad day on Aug. 27, 2002. Maybe a little cold, she thought. A touch of the flu, perhaps.
Barely eight-months pregnant with her first child, there was no way she could be in labor already. Not at 32 weeks.
Right?
Wrong.
Wiesenbaugh already had called in sick that morning to her job at the Library Foundation of Los Angeles. When several hours passed and she still wasn’t feeling better, several frantic calls to her doctor followed.
“Something’s not right,” Wiesenbaugh said. “Something is definitely wrong here.”
The doctor told her to get to a hospital right away.
*****
Wiesenbaugh’s child was born prematurely and placed under emergency care.
The boy, named Riley, came through it. And now he’s 5 years old.
But his infant and toddler years have presented one challenge after another for the young family.
Even so, with all that has gone wrong with Riley, one problem the family managed to avoid was having him contract RSV. But it’s been costly for them to provide Riley the preventative treatments.
Respiratory Syncytial Virus accounts for more than 125,000 hospitalizations each year, and is the leading cause of infant hospitalization in the U.S.
Though the condition can be deadly, it is preventable if the symptoms are caught in time.
Problem is, parents can easily confuse the symptoms of RSV with those of a common cold.
*****
On that day in Los Angeles in 2002 when Wiesenbaugh was trying to get to the hospital, nothing would be easy.
Her husband, John Buck, was stuck at work, and it would take him more than an hour to fight his way through the congested L.A. traffic to get to her.
In the end, she wound up calling a cab.
“And then, to make matters worse, the cab driver couldn’t find the place and barely spoke any English,” said the Bonita Springs mother of two. “I couldn’t believe it was happening.”
When the communication barrier was finally hurdled, off to the hospital they went: Wiesenbaugh and her confused cab driver. Time to fight the L.A. traffic once more.
Although it’s of little comfort now, Wiesenbaugh had enjoyed a remarkably healthy pregnancy up to that point.
She ate right, exercised dutifully and stayed away from all the things she was supposed to stay away from.
No booze, no cigarettes, no anything that could negatively affect her unborn baby.
So her first inkling that something might be wrong came during the emergency C-section at UCLA-Santa Monica.
“The operating room filled up so quickly it was amazing,” Wiesenbaugh said. “They listened to his heartbeat and it was obvious that he was in huge distress. The (medical) team rushed in and took him. I didn’t even get to see him and I didn’t know what was wrong. It was just devastating.”
When they finally wheeled her in to see her newborn baby several hours later, premature little Riley was much smaller than most babies. Just four pounds, eight ounces.
And he didn’t look right.
“Preemies are very distinct looking,” Wiesenbaugh said. “There’s no baby fat on them at all. Riley didn’t look like an infant at all – he looked old.”
But that wasn’t all of it. Not by a long shot.
*****
Riley had suffered a massive brain hemorrhage.
To make matters worse, his kidneys weren’t working properly, and at one point, Wiesenbaugh and her husband were faced with the unenviable task of signing a DNR _ Do Not Resuscitate _ order.
But Riley made it through.
Today at age 5, Riley is a special-needs child.
He is largely non-verbal, hard of hearing and has only limited peripheral vision. Because of the nature of the injuries to his brain, he has an extremely difficult time processing the world around him. There’s a shunt in his head to transfer excess cerebral spinal fluid to his abdomen.
Riley’s mother and father moved their young family to Florida about a year and a half after he was born, seeking whatever emotional comfort they could from family and friends.
Now, Wiesenbaugh wants to offer comfort to other young mothers.
*****
Despite Riley’s medical troubles, his family has managed to keep him, while at risk for RSV, from contracting it.
“It’s a very common virus that we all have the potential to get, but usually we just get a cold,” said Dr. Michael Light, a professor of clinical pediatrics at the University of Miami. “The problem is that babies have the potential to develop bronchiolitis from it.”
Light said all babies contract RSV at one point or another – it’s not a condition unique to preemies, like Riley, as is commonly thought.
“The majority of the time, it stays in the nose, not the lungs,” he said. “It’s when it gets to the lungs that there’s a problem.”
RSV season stretches from November to March in most parts of the country, but Florida has a season that lasts year-round, generally kicking into high-gear around August, Light said.
“It’s the peak of the season now, but because of the humidity here, it lasts all year,” he said.
RSV is generally transmitted by hand, Light said.
“When somebody touches a surface with RSV on it, and then touches a baby, it goes in through the eyes or nose,” he said. “The most useful prevention is simple hand-washing.”
But there’s also something of a wonder drug out there, Light added.
It’s called Synagis, and it’s administered at the first signs of RSV.
Unfortunately, it’s also expensive – about $1,000 for each monthly injection.
*****
To keep him as well as possible, Riley received Synagis injections for six months, and Wiesenbaugh had to pay the $6,000 fee up front with her credit card, only $3,000 of which she eventually got back from insurance coverage.
“Not only that, but for some reason they didn’t have Synagis in Los Angeles, so I had to call a pharmacy in Washington, D.C., have them ship it to a pharmacy in California, and then have them ship it to my doctor,” she said.
Wonder drugs aside, prevention is the key to avoiding RSV, Wiesenbaugh said.
“If you have an at-risk child, be careful of the contact the child has with family and caregivers,” she said. “If anyone’s around your child, be sure to have them wash their hands. Keep away from crowded places like malls and play centers and from other kids with cold symptoms.
“And don’t have any qualms about telling people who want to touch your beautiful young child, ‘Hey, you can look, but please don’t touch.’”
Sadly, that isn’t much of a problem when it comes to Riley, Wiesenbaugh said.
“A lot of people won’t even look at us – they’ll look right through us,” she said. “They don’t want to identify with the fact that this could happen to their own child, and I don’t blame them for that. I certainly didn’t want it to happen to my son.”
A few years after Riley’s birth, Wiesenbaugh and her husband welcomed another child into the world – a healthy baby boy named Ronan who will turn 3 in December.
“He’s healthy and he’s energetic,” Wiesenbaugh said with a laugh. “Boy, is he energetic!”

For more information on how to prevent RSV, visit www.RSVprotection.com.

Born prematurely, Riley Bush, 5, suffered a number of complications and according to his doctor, was considered high risk for the breathing disorder RSV. As a precaution, his mother, Stacie Wiesenbaugh made sure he had preventative RSV shot called Synagis despite inconsistencies with her insurance company which sometimes caused major problems.

Photo by MICHEL FORTIER, Daily News
Born prematurely, Riley Bush, 5, suffered a number of complications and according to his doctor, was considered high risk for the breathing disorder RSV. As a precaution, his mother, Stacie Wiesenbaugh made sure he had preventative RSV shot called Synagis despite inconsistencies with her insurance company which sometimes caused major problems.


Contact John Osborne at johnaosborne@hotmail.com

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