Stacie's Theory of Relativity

Stacie's Theory of Relativity.... 

R.espite

E.quals

L.oving

A.ll

T.hose

I.

V.alue

I.n

T.he

Y.ears... Me, my child, my family For a Moment in Time....

Respite is a moment in time, no matter how brief.

It is spending time with you and going back in the past to remember who you are.

It is spending time with a spouse and remembering why you got married or even said hello to them.... creating future memories.

It is holding on to a moment in time that is for you, even briefly, that reminds you of who you are (the person you were or thought you would be)...

It is living in a moment with those you love....

It is spending time with a child and forgetting the disability...

Respite is not about the hours in a day you have to take care of a child.  It is about the hours in life you are given and how you will spend those moments.  Respite is about spending time with the most important  or more importantly, share those moments with others....

This is 10 minutes of my life to post.,.... share with others... my respite.

Written by my Sweetheart

My Honor: NECs December Volunteer Spotlight

Naples Equestrian Challenge kindly "spotlighted" me as December's Volunteer.  I am very honored and share the form I turned in for the Spotlight Bulletin Board in the hospitality shed.  

VOLUNTEER SPOTLIGHT

Stacie Wiesenbaugh

Moved to Naples from: Los Angeles, CA                   Year moved to Naples: 2004

Why did you move to Naples?:

Our first child, Riley, experience a massive brain hemorrhage in utero.  His traumatic birth caused us to make many changes to our lifestyle which included moving to be closer to family.  We decided upon SWFL where my mother spends the majority of her time.

Present and/or past occupation, company name, job title & responsibilities: 

After the birth of my son, nearly 10 years ago, I gave up my paid occupation to devote time to him and ultimately educating and promoting causes of special needs. I LOVE NEC but also devote my time (when not caring for Riley) as an Arbonne Independent Consultant, the boys schools, and a personal blog on the journey of special needs parents.  Between caring for Riley and that, my "time clock" is full.

College/University & Degree(s) held including subject area:

Gettysburg College, English Lit. B.A.

Brooks Institute of Photography, Media, B.A.

Special Needs Kids, I have my S.N.K. degree (graduated on 8.28.2002 (birth of son)) and still pursuing.

Family (name of spouse, # children/grandchildren/pets):

Spouse: John Buck (when I claim him) John sits on the Program Committee and is the face behind the camera at NEC events.

Children: Riley (9) & Ronan (7 this month)

Hobbies/sports:

Scuba Diving & Photography

I became a Naples Equestrian Challenge volunteer (month/year):

I think that if you have a child with Special Needs, you need to be there for him/her.  When Riley turned 3 fall of 2005, we joined NEC.  I wanted to be there for him and give my time to a cause that I truly believe in. 

Volunteer areas:

I became a volunteer at NEC because it was the agreement parents and caregivers made as part of the rider contract.  My other Volunteer activity is volunteering my husband for things!  NEC is a "family oriented thing."  I am one of Riley's regular side-walkers, but not necessarily his favorite.  This year I took on another volunteer area as fundraiser.  Chico's, offered an opportunity for a shopping day in The Company Store, a sample sale warehouse, and the proceeds were returned to NEC.  The event took place in September and I hope to make it a yearly event with even greater attendance in the future.

Some of my most memorable NEC moments are…

Growing with NEC.  I started when the arena had no roof (those were some hot days, but fun for the kids).  Watching the Volunteers grow (we have photos of young boys and girls who have stayed with the program so long they turned into kids with braces into amazing adults).

I will always remember our first visit to NEC.  At that time, Riley was challenged by motion and car rides were particularly miserable.  He had cried on the drive and I was regretting taking him out at all.  It was a hot quiet summer day and the place appeared deserted.  I pulled Riley from his car seat and as I brought him into the sun a strong breeze struck us carrying the scent of hay and horses.  Riley's mood immediately turned joyous.  He liked it all and we had barely taken a step.  It smelled right to him.  It felt right.  I knew we would be staying.

As the years have gone by, NEC has remained a constant in our life.  As a special needs family, we don't go anywhere unnecessarily.  As a child and family with multiple disabilities sets us apart.  Naples Equestrian Challenge is one place where we are always welcome and understood.  It is also unique in that this is the one therapy we do not need to justify and can simply be something Riley can participate in and enjoy.

MY other comment:

Being Volunteer of the Month is not expected.  Particularly because there are SO many people "behind" this organization who are not out in the arena with the horses/kids who are so deserving...   Being a part of NEC is not about being at NEC when the kids ride.  It is about the families sharing education/being there for each other; the staff who do this not for the money, but the love of what they do; the people who because of physical or other challenges cannot side walk, but give their time in countless other ways.  The amazing sponsors who literally built a roof over my son's head when he walks and hung fans to cool him.  There are so many facets to NEC that we can all partake in.  I am Blessed to be a part of such an organization.

Other organizations & positions held:

Currently, I am an Arbonne Independent Consultant for health and wellness products, a blogger and I also volunteer with Freedom Waters Foundation, Rayma C. Page Elementary (Riley's school) and Bonita Springs Preparatory and Fitness Academy (Riley's School).

Some of my previous volunteer positions:

Wildlife Waystation, Level II volunteer

Volunteer, The Junior League of Los Angeles, Marketing Committee

Coastal Clean-Up Day Beach Captain for Will Rogers Beach & Steering Committee City of         Santa Monica

California Coastal Commission recognition 1993  1994, 1995, 1997

tripled turn-out to 500 in my first year as captain, collected 1139 pounds of trash, only 10 pounds shy of the winning site for most trash

Some of my previous employment positions:

US Census Bureau, 2010 Census, Ennumerator

Library Foundation of Los Angeles,                     

Lead for the City of Los Angeles Campaign, Liaison for The Council, Library Associates Membership

Freeman Hospitals Foundation - Donor Service Management for Hospitals & PCRI (Prostate Cancer Research Institute), Financial tracking, Grant, Events

The Nature Conservancy

Earth Share of California, Campaign Manager

The Polar Express Chair

The holiday season has kept us pretty busy... Daddy makes sure Riley can participate in any celebration.  This is not an easy task so decorating the wheelchair is usually the first step.  Today Riley's class will watch The Polar Express.  His chair is covered in lights as well as a musical ornament.  They'll know he's there today!

Here Riley is before fully awake waiting for his school bus.

Last week John let me tag along to his school presentations as The Shark Tooth Guy.  First he met Kindergartner's in Mrs. Doyle's classroom then on to the 1st Graders, including Ronan.

NEC's Volunteer Spotlight

On November 2nd, I received this unexpected email:

Congratulations! 

You have been selected by the Program Committee as the October 2011 Volunteer Spotlight. 

Your photo and tribute will be displayed throughout the month in the display case outside the Volunteer Hospitality Shed.

On behalf of the staff and volunteers we thank you for your dedication and continued support of Naples Equestrian Challenge. You help out in so many different ways and you truly deserve to be spotlighted.

I am attaching a Volunteer Spotlight bio guide for you to fill out and return to me to help us with your displayed tribute.

Thank you,

Missy

Volunteer Spotlight?  Me?

John sits on the Program Committee which elects the Volunteer and the Rider of the Month.  He had mentioned nothing.  I quizzed him later.  What did I learn?  I learned that John abstained from the vote... and that was all.

How could I possibly deserve this honor?  How could I possibly participate enough to earn this recognition?  I wasn't there this morning when the horses were searching for their grain as the sun rose... I wasn't there last night when the stalls needed to be cleaned.  I wasn't there yesterday when the horses were hot and sweaty, waiting patiently for their tack to be removed and cleaned after lessons.  I wasn't there before the riders arrived to set up the ring...  I wasn't there as phone calls were made and invitations sent out to prepare for The Bootstrap Boogie fundraiser....  I wasn't even there when the last dish and chair was safely put away after the fundraiser... 

My husband was there for some of it.... Each member of the Program Committee was there for much of it... I see regular faces when we arrive for Riley's riding session who are still there each Monday evening as we pull out of our parking space... 

So very much goes into making Naples Equestrian Challenge a success.   My part is so very small.  So how could I possibly be noticed among all those amazing volunteers?  Perhaps that is the key.  All those amazing staff and volunteers do notice.  They notice that I try.  They understand that Riley, just as the many other children in the program, is a handful.  John and I made the decision back when Riley was just three years old that riding would benefit him.  This program deserves to be a success so I participate as I can.  I sidewalk with Riley here and there as needed.  My Chico's fundraiser was successful but far from the earnings of the Bootstrap Boogie (oh, here are more amazing photo's of the event by John: http://www.naplesnews.com/photos/galleries/2011/nov/24/naples-equestrian-challenge-bootstrap-boogie-2011/).  In fact, sometimes I'm a little overbearing.  Yeah, I know it.  Perhaps a little acerbic.  I lecture volunteers.  I preach to other parents who are unwilling to participate.  There must be more than one volunteer or parent who issues a little sigh upon my arrival.  

But, after all that, here they are appreciating me.  And I appreciate each one of these amazing people who keep this wonderful place working for our kids.

Thank you Naples Equestrian Challenge!  You bring so much to our life!

We are all special... by Stacie Wiesenbaugh

Later this week I will share the write up I shared for the bulletin board.
Smiley Face

Monday at the Barn:

Ronan makes himself at home in the hospitality shed to get his homework done.

Ms. Deb, volunteer PT, help Riley get a back stretch aboard Pick A Spot.

Reindeer for Stephanie!

To learn more about Naples Equestrian Challenge:

Melissa Saracino

Program & Volunteer Manager

Naples Equestrian Challenge

206 Ridge Drive Naples, Florida 34108

Tel:   + 1 239 596 2988

Fax:  + 1 239 514 2908

+ missysaracino@naplesequestrianchallenge.org

8 www.naplesequestrianchallenge.org

www.facebook.com/NaplesEquestrianChallenge

“The horses were the reason I started volunteering with NEC, however, the reason I stayed were the riders.”

- NEC Volunteer, Charlotte Newell

Little Brother Turns 7!

We celebrated Ronan's 7th birthday this past weekend.  We threw a joint party along with our his classmate, our friends' and neighbors.  It was a wonderful event.  For Riley it was a long one as he had to spend much more time than we would have liked in the wheelchair; he did however appreciate all the energy around him.

Taking the time to celebrate, reminds us of the importance of our family and feeding our souls.

It was a Happy Birthday!  Stacie

Toys Designed for Kids Who Have Special Needs
Top Fidget Ideas for Christmas

Freedom Waters Foundation Harnesses the Power of the Sea by Stephen Brown

http://www.naplesillustrated.com/index.cfm?fuseaction=news.details&page=1&ArticleId=2993&returnTo=main

EAT DRINK AND HELP RAISE FUNDS FOR FREEDOM WATERS FOUNDATION

Different Dream Parenting Giveaway Winner

Riley has drawn a winner.  The giveaway is for the book Different Dream Parenting by Jolene Philo.  You may read Ms. Philo's interview with Rileys-Smile here.  Just this morning we put our entries into our large Abalone shell (a souvenir from my life in Santa Barbara) and somehow convinced Riley to grasp one scrap of paper.

Picking up just one piece of paper was no small task.  Eventually he held one balled slip...

And our Winner Is: Jane and her beautiful daughter Tilly.

I greatly appreciate those of you who came by and entered my giveaway.  Thank you so much!

Stacie

Help keep accessible parking spaces free for the truly physically challenged enforcing the The Citizen Observer Program

Please sign and share this petition: https://wwws.whitehouse.gov/petitions/!/petition/help-keep-accessible-parking-spaces-free-truly-physically-challenged-enforcing-citizen-observer/5WFYhGzC

You may have noticed... I OBJECT to handicapped parking abuse: http://rileys-smile.blogspot.com/search/label/Handicapped%20Parking.  Please sign this petition and share with your friends. If you have ever needed an accessible parking space, it is quite likely you could not actually park in one due the prevalence of abuse.  I'd really appreciate it if you'd spread the word. Thanks so much!!!

Now I Can : Help Raise Awareness

Now I Can
Now I Can New Documentary Book

Interview with Jolene Philo: A Different Dream for My Child

As a new blogger, I quickly discovered Jolene Philo's, Different Dream during my search for other parent bloggers of children with disabilities.  Different Dream soon became a reliable and sensible resource for my own special needs life.  I have been honored by being permitted an early look at A Different Dream for My Child.  

Picking up the book, I  was pleased to find the same balance and care I know from her blog which would comfort and counsel any special needs parent through their new reality of life.  The guide is designed to help parents newly parenting a special needs child to stay on the path and become strong advocates for their child and family.  

I thank Ms. Philo for allowing me the opportunity to address questions to her prior to the book launch.  Thank you so much for your time and inspiration!

1.   Serious childhood illness and the needs of parents makes people feel uncomfortable. How do you find the strength to reach beyond your own experiences to help the special needs community?

Jolene: My strength comes from the compassion inherent in shared experience. The memory of the isolation my husband I experienced while parenting our son with special needs compels me to reach out. Our son is now well and whole. I’ve been blessed with resources, ability, and training to reach out to others. So I do it.

2.   In the initial aftermath of the birth of a special needs child, new parents are unlikely to have the time and energy to pick up your guide prior to the first decisions they must make... if you were to make a list of the most important lessons you would like them to know in their first days would you please share them here?

Jolene: You’re absolutely right. Most parents don’t have access to Different Dream Parenting or any other book immediately after diagnosis. I advise parents facing unexpected, immediate decisions to pray together, then assess the options, choose as best they can under the circumstances, and trust God to deal with the rest. Once the immediate decisions are taken care of, parents should contact their insurance company, if the situation warrants that, to update them. After that, parents must tap into an emotional and spiritual support system. They can start a CaringBridge page to update others and receive encouraging notes. They might contact a pastor. Of course, I’d love to have them visit DifferentDream.com for resources and support, too.

3.   When a child has serious illness or condition, the focus is on the child, but the family as a whole  needs support, too.  My own family now receives services through a local hospice program for children with life altering illness and their families.  Have you found similar programs available throughout the country and if so are there any that come to mind as exceptional?

Jolene: While doing the research for Different Dream Parenting, I interviewed the coordinator of the Pain and Palliative Care department at Children’s Hospitals of Minnesota, Stacy Remke. (Most children’s hospitals now substitute “pain and palliative care” for “hospice” because many children now live many years with conditions once considered terminal.) Their program is the model for programs around the country. Most large university and children’s hospitals should have a hospice, pain and palliative care, grief, or bereavement department. I suggest parents find the one closest to them geographically and tap into it.

4.   The outward changes in the lives of parents of very sick children are visible. But what internal changes do the parents experience? How does it affect them spiritually and emotionally?

Jolene: Let’s talk about the spiritual effects first. Obviously, these parents are going to question God about why he allows innocent children to get sick, suffer, and even die. Their faith will be shaken. Either they will resolve those questions and draw closer to God, or they will lose faith and turn away from him. It’s impossible to address those questions here, but they are dealt with Different Dream Parenting.

Emotionally, many parents of kids with special needs wrestle with grief and guilt. These are perfectly normal emotions for their circumstances, but they don’t realize that. Again, those issues are discussed in detail in Different Dream Parenting.

5.   If it’s hard to approach the parents of a seriously ill child, it’s doubly difficult to know what to say to parents who have lost a child. How do we approach them? What should and shouldn’t we say and do?

Jolene: The most important thing you can do is to use the child’s name. Many people shy away from saying the child’s name because they think it will hurt the parents. But parents who have lost children tell me they love to hear their child’s name. Doing so is a reminder that their child lived a life that mattered.

Don’t say “I know how you feel” unless you’ve lost a child and do know how they feel. Other than that, just ask them if they want to talk and follow their lead. Send cards on the child’s birthday, the anniversary of the diagnosis, the anniversary of the death, on Mother’s and Father’s Day. Send cards for years and years and years. Finally, just be a friend. Spend time with them. Go places. Have fun. Let them cry. Let them laugh.

6.   Professionals who come into our lives for our children are educate us to be the best parent we can to help our child.  You mention that as parents of special needs children we educate the professionals as well.  Do you have any advice for parents struggling to communicate their needs and desires for their child's future?

Jolene: I suggest parents write down their hopes and goals for their children’s futures and share them. As soon as or if kids can verbalize their own hopes and goals, write them down and share them, too. Also, make a portfolio for your child. Include items your child has created and even video of your child playing or interacting at home. That can give educators a different view of your child. (As a former teacher, I know kids behave differently at home and school.)

7.   It is often difficult for the rest of the family - siblings, grandparents, aunts, uncles, and cousins to understand what the special needs family is experiencing.  How do parents educate these family members and perhaps friends to be the support system they need?

Jolene: Different Dream Parenting has an entire chapter on the subject. It’s hard to condense it into a paragraph! Siblings need alone time with parents, especially if the special needs sibling requires a great deal of care. The best resource around is SibShops, founded by Don Meyer. (www.siblingsupport.org) Here are a few tips for educating extended family members:

·         email frequent  updates

·         refer them to websites about the child’s condition

·         ask them to go to doctor’s appointments or therapy sessions with you

arrange for some adult-only time with them now and then

11. Please share some of your own spiritual journey.  You have a very strong faith base; when your own child suffered a traumatic birth did you have the relationship to God you needed at the time?  If not, please tell me more about the process of your relationship?

Jolene: My husband and I were 25 when our son was born and had been Christians for many years. But we lived in a very remote area with very little spiritual support. My husband handled everything much better than I did. For several months, I was very anxious and angry. One day I was so tired and frustrated, I threw a plastic glass on the kitchen floor and it shattered. At that moment, God whispered, “What are you so afraid of Jolene?” When I realized my fear was that my baby would die and God assured me that if that happened, my baby would immediately be in heaven with him, my anxiety was gone. There was nothing to fear.

Another pivotal moment came many years later when our son went through a period of separation from us. (He was suffering from undiagnosed post-traumatic stress disorder which has since been successfully treated.) God made it very clear that he understood exactly how both my son and I felt. When Christ was on the cross, God the Father and God the Son were separated from one another. A God who loved me enough to come to earth and experience what I would one day experience is a God I can trust and follow. Since then Romans 8:32 has been a verse that brings both hope and comfort to me:

For He who did not spare His own Son, but delivered Him up for us all, how will He not with Him freely give us all things? My hope is that other parents will also find hope and comfort in the God who understands exactly how they and their child feels.


Thank you Jolene for sharing with us!
Your dedication to these families is inspirational.
Stacie

Different Dream Parenting is available at 10% off the retail price:

http://www.dhp.org/Products/UB913.aspx.