Riley's Smile

Riley's Smile Relocates to http://www.rileyssmile.com/

2012-03-01T14:00:00.005-05:00

Riley's Smile has moved.

Please join us at our new address:

http://www.rileyssmile.com/

2012-02-27T11:57:00.002-05:00

Save Early Steps

‎The end of session is getting close and we still need the House to fund Early Steps with $6.9 Million to help more than 45,000 Florida families annually. Take some time today to call the Health Care Appropriations Subcommittee Chair Rep. Matt Hudson {(850) 488-1028} and Vice Chair, Rep. Richard Corcoran {(850) 488-8528}. Let them know that you want to see Early Steps funded at $6.9 Million! Help them understand how much Early Steps means to you and encourage them to view the Save Early Steps Facebook page to see the many family stories that have been posted. With your help we can Save Early Steps!!

February 2012 Recommendations

2012-02-23T11:06:00.001-05:00

My recommendations for disability posts, organizations and even recent dvds and movies are going up a little early this month and I hope you explore the links that catch your eye. Please share your reactions to any of them.

Riley's Smile is in process of migrating to a new location and should be live by the end of the week. Please stay with us at our new address: http://www.rileyssmile.com/

Our life

Au cœur, sans cœur un vrai ... An Open Letter from Adam

The Walking Wounded
Sticks and Stones
A Blue Rose - A Mentally Challenged Child
Stand by Me; Unless You Have A Disability
Easing Isolation
Alone
My Child's Dream: To Have Friends
Denied

Education

ECE Spring Syllabus : The Child with Special Needs
Dan Marino Foundation plans vocational college in Fort Myers, FL

A student who earns a special diploma should be considered a graduate. Contact the State Board of Education at lynn.abbott@fldoe.org or 850 245-9661 to let t...

Creative
Call for Artwork: All Kids Can CREATE

VSA Florida is hoping everyone will want to participate in this fantastic Call for Art opportunity for students of all abilities. Deadline is April 8, 2012

VSA and CVS Caremark invite you to submit artwork showing your child's or student's creativity! Explore new activities, rethink your perceptions, discover yourself as an artist, and submit your art today!

Helpful Tips
Helpline for Travelers with Disabilities
TSA Cares

Therapy & Medical
Cerebral Palsy and Fatigue
Pediatric Stroke

Equipment and Supplies
The Farrell Valve Bag - GI/gas issues
Weighted Blankets

Books & Movies
A Mile in His Shoes
No Ordinary Boy
A Perfect Place

Instrumental song "Riley's Smile"

Woman in a Tiara

2012-02-18T19:57:00.000-05:00

Last Saturday evening an unusual event happened.... John and Iwent out alone. It was a littledisconcerting as this has only happened a handful of times since Riley'sbirth. It only happens with considerableplanning. Saturday, however, was animportant occasion; Debby Frenkel, Executive Director of Freedom WatersFoundation (FWF), was celebrating a birthday.

The boys each had plans. Riley spent his evening with Debbie, PICs respite nurse, and Ronan haddinner and movie plans with his grandmother, aka Kappi. This left us free to drive away... after 6 pmin the evening. As John observed, wewere driving after dark! Parents of onlytypically developing children lament the few moments they get alone togetherand make great fuss over date nights, yet somehow they seem to happen at a fairrate of regularity - at least from my perspective. Special Needs Parents must go toextraordinary lengths for the same moments. During this extremely rare event it is still difficult to not bewondering 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, ourown health and well-being. It also wouldnot hurt to spoil ourselves on a rare occasion. Driving south on Tamiami toward Naples, I noticed the local Persian restaurant Iwanted so much to try. "One ofthese days we are going to eat there," I swore outloud. The matter-of-fact answer back, "Wetried, remember. They don't havetake-out." No take-out clearlyprecluded us from having anything to do with any establishment. As disturbing as that answer was, it was alsotrue. No Persian food for us. That did not stop me from rolling my eyes atJohn and repeating this crazy answer several times throughout the evening as if I lived in some other realityand the only thing stopping me from eating where I wanted was John's reluctanceto 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 inhand unfortunately. Without the crazywoman in a tiara, our lives would be just a little less.

A brief conversation with Kate, an FWF volunteer, brought me backto my reality when I was asked where the boys were. Actually, I am almost surprised to berecognized without them by my side and in my arms. I explained how fortunate we were to have arespite nurse that evening, sharing that we now receive 150 hours a year ofrespite. This has been one of thegreatest gifts of our life. The responsewas unexpected, "Is that all! InAlaska, 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 thosebudgets and taking from one fund to boost another. Services change, times change, budgets changeand attitudes change. even when servicesexist they can be quite challenging. Doresidents even know they exist? Is theage range wrong, the diagnosis, the family income? Perhaps the family has no energy left topursue anything at all. Now, this is ascenario John and I understand all too well.

Going forward with this blog, I would like to explore the currentsituation of each state. Not an in depthexploration as I do not have the access to such information. I would however, over time, like to find someof the perceptions with the status of special needs services and livesthroughout the country. This should alsobe approached with the understanding that there will be as many differentexperiences in any given area as there are special needs families.

As I mentioned earlier, it is possible for many useful events tobe happening. Knowing about it is yetanother. My previous post is an alert tothe FDLRS Open Lab Night. I learned aboutit at last Friday's Parents as Mentors, a group of Lee County Schools ESEparents. The flier was shared widely bea Lee County Schools employee. Yet, Ipassed 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 toher attention and they sent it home with every student in the school. Now, why is it so difficult to disseminateinformation? Really, I would like toknow why this happens. The school was sohappy to know about it, how is it that they are in the same school system withno notice of a useful event whatsoever?

Would any of my wonderful readers like to contribute their ownexperience to this series I propose? For the moment, I shall call it The State ofSpecial Needs. You are each certainly welcome to weigh in andI hope you do. Anyone care to wear thetiara for a day and share?

We are all special... Stacie Wiesenabugh

FDLRS Open Lab Nights

2012-02-10T20:22:00.001-05:00

PARENTS-

YOU ARE CORDIALLY INVITED TO ATTEND…

FDLRSOpen Lab Nights

Florida Diagnostic Learning and Resource Services

Learn how visual schedules can reduce behaviors andenhance your child’s language development and Create personalized visuals and schedules for yourchild (Please bring personalized photos or family photoswith you)

If you are interested inattending an Open Lab Night please contact:

Jennifer Kuehl or Kristen Emeric for moredetails.

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

The 2nd Annual Naples Equestrian Challenge 5k Run/Walk

2012-02-09T14:00:00.000-05:00

The 2^nd Annual Naples Equestrian Challenge5k Run/Walk is scheduled for Saturday, February 18^th at 7:30am.

Ifyou have not already signed up – there is still time!!!

Raceto be held in the Pine Ridge neighborhood.
Parking is at the North Naples United Methodist Church.

Weencourage online registration at www.gcrunner.org.

http://www.raceit.com/search/event.aspx?event=1f04d825-3ad4-46e6-8c0c-0f629653f590.aspx

Toys for Children with Cerebral Palsy

2012-02-08T12:00:00.000-05:00

Parents of children with cerebral palsy need to beencouraged to play with their children. In fact, children who donot have access to the play experience can be negatively impacted in theirdevelopment, overall health and both their physical and mental well-being. The same is true for children withspina bifida and muscular dystrophy and those who experience a whole host of muscular and skeletalchallenges.

The good news is that there are current toys out there thatcan fit the bill or that might just need a little modification to make themappropriate. Finding these playproducts gives parents the ability to delight and inspire a child with cerebralpalsy and encourage a connection to play.

So what should parents, family or caregivers look forwhen they are shopping for the kid in their life with some special needs? Ellen Metrick, Chief Toy Evaluator ofAblePlay, a website devoted to connecting children with cerebral palsy andother disabilities to appropriate toys, offers some advice. “There are really two perspectivesparents can take when shopping for the child in their life with special needs.First, they can look for toys that are geared to the abilities he or shecurrently has, or secondly, they can look for toys that will move the childtowards the abilities she or he is working towards. Both are valid ways to begin the search for playproducts.”

What might be some elements within those categories thata parent might also want to look for?

Toys that provide stability for the child. Children with cerebral palsy might havelimited mobility and body control and need toys that are solid and stable. Fortunately, there are swings andride-ons in the marketplace that can provide core support to a child. These products let kids enjoy theincredible freedom of both swinging through the air and riding into the wind(either self-propelled orpushed). Metrick encouragesthese play products by reminding parents, “Sometimes it is the best therapy toget a kid outside and doing an activity other kids enjoy. Swings and bikes are among my absolutefavorites for just that reason. “

Outside play sets are another great option. Parentsshould make sure they purchase one that is built well and provides stabilityfor the child. If the child is ina wheelchair, make sure the play set openings are wide enough to accommodate achild, has activities that can be reached, and includes any support they mayneed.

Toys that are stable themselves. Look for toys that can fit securely ona wheelchair top or that have suction cups, rubber or Velcro on them toincrease stability. Metrick alsoadvises, “Adding non-skid adhesive strips to the bottom of a toy is a quick,easy way to make it stable and allow a child to easily manipulate it.” Toys that are inflatable and can havesome air taken out can increase a child’s ability to grasp it. Drawing materials and crayons now comein ball and triangle shapes that make it easier for a child to use andenjoy. Metrick advises parents totake the time to search a little, since there are lots of great options outthere for kids of all abilities.

For ideas on specific toys, and plays productscategorized by disabilities go to www.ableplay.org. AblePlay is a website that researches, rates andreviews current toys for children with special needs. AblePlay is part ofthe nonprofit National Lekotek Center, the leading authority on play forchildren with disabilities www.lekotek.org.

this in that

2012-02-08T11:46:00.000-05:00

SWFL Ladies - it is time to make your reservations.

My next fundraiser will be for Freedom Waters Foundation.

Please see the flier HERE.

President Obama Appoints New Members to Committee for People With Intellectual Disabilities - CEC Policy Insider Last week, the Obama Administration announced several key new appointments, including the appointment of Peter Bell and Jack Brandt as members of the President’s Committee for People with Intellectual Disabilities. The committee is made up of 21 citizen members and 13 federal employees who are tasked...

Please vote again today for me... The Ugliest Blog Contest.

I am currently behind 57 to 62.

The Librum of Time is working pretty hard for this one.

Help me make her work a little harder.

Save Allergic Kids Lives in Schools - Peitition at Change.org|

Meet Wichita of Wildlife Waystation... Thank goodness for the Waystation that misplaced animals may still have a home and thrive while educating us all.

Please cast your vote - blog style

2012-02-07T20:52:00.000-05:00

Hey everybody...

Riley's Smile is falling into second place in The Ugliest Blog Contest.

Please wander by tonight, tomorrow and Friday to cast your vote

at Lady Jane Designs.

http://bloggersitedesign.com/and-the-finalist-are-let-the-voting-begin/

Thank you so very much for your support.

Parenting Special Needs: Tips for Your Future Caregiver

2012-02-07T12:19:00.000-05:00

http://myemail.constantcontact.com/Tips-for-Your-Future-Caregiver.html?soid=1108825804726&aid=BgDYk-O3MCA

Hanging with Riley

2012-02-07T10:37:00.000-05:00

The Ugliest Blog Giveaway Voting continues through the week. Please visit Lady Jane Designs and cast your vote to help brighten up Riley's Smile. Thank you!

Riley loves food. Dinner is his favorite and feeding him can be quite challenging while he laughs and writhes. He rides his wheelchair much like a first timer aboard the mechanical bull at the local country bar. By the time I got out the video he was much calmer but you get the idea. Much of the meal lands on the kitchen wall and rains down on both of us.

Over the weekend Dad and Riley had lots of one on one time while little brother was on an overnight playdate.

Yesterday morning Riley woke vomiting and soon started with an unusual seizure. For once I had the wherewithal to video.

Our lanai is bursting with blooms and strangely they fill me with melancholy. The white butterfly orchid was delivered to my the morning of Riley's birth by the kindness of a distant friend. Each time the buds return I remember the anguish John and I were suffering when they first arrived.

The red Cymbidium rarely shows shares its blooms with us. Florida is certainly not the proper home for this beauty. It is one of the few Cymbidiums we held on to after our move from Southern California. It reminds me of the time in our marriage when we were full of hope and great plans. I remember long lazy loving days in Santa Barbara when we had the time and energy to enjoy each other.

Yes, we are making progress in regaining some of that hope and joy in life. It is a process and a difficult journey. For now, I must turn my attention to Riley. Thankfully, he seems to finally be keeping down a meal.

We are all special... Stacie Wiesenbaugh

Falling Off a High-Heeled Life: Make YOUR vote count!! I need YOUR HELP

2012-02-06T13:03:00.000-05:00

Falling Off a High-Heeled Life: Make YOUR vote count!! I need YOUR HELP: In BlogLand we come across many wonderful and inspiring blogs one of those blogs for me is Riley's Smile. I have been following Stacie and ...

Falling Off A High-Heeled Life has been amazingly supportive to my blogging efforts and my personal stories. Please return the kindness and visit this beautiful blog. Stacie

Flight Platform Living: Making Plans to Leave!

2012-02-05T21:30:00.000-05:00

Flight Platform Living: Making Plans to Leave!: I followed links, I searched the Internet and finally I found it...that remote institution...Bobby's 'home'! I read that 10% of t...

The Ugliest Blog Contest

2012-02-05T10:27:00.001-05:00

Well, I do not think any of the contestants are the least bit ugly and has developed their own unique personality!

However each of them, Riley's Smile included,

could use a little professional help to achieve desired impact and bring in a larger audience.

This brings us to the very talented services of Lady Jane Designs.

Dear Reader,

Please follow the link The Ugliest Blog Contest and vote for your selection to win Lady Jane's Blog Makeover. Yes, I would really like to win the makeover!

Then again, do I want to believe ya'll think my blog ugly? Hmmmn.

Yep, I'd like to win.

So please head on over and check out the contest, voting once each day this week is permitted.

Thanks so much for your help! Stacie

Paragon Flight Training’s Flights For Kids

2012-02-03T16:32:00.002-05:00

When:

Monday—February 6 3:00—7:00 p.m.
Where: Paragon Flight Training...511 Danley Rd., Fort Myers, FL 33907—239-274-3170

Why:

Fun day for the kid’s battling disease in our area!

What:

Twinkle Toes the Facepainter, The Game Guys, Let’s Bounce bounce houses, Carrabbas food and drink, police and fire Department and prizes for the kids!

How:

RSVP johnc@floridaeverblades.com by
Friday, February 3!!

Questions:??

John Curtis
239-948-7825 ext. 1500
johnc@floridaeverblades.com

Florida Everblades

Paragon Flight Training

2012-02-03T12:39:00.000-05:00

Disability Day at Capitol

2012-02-03T12:15:00.000-05:00

Disability Day at Capitol

Gifts for Children with Cerebral Palsy

2012-02-01T12:38:00.000-05:00

Finding Great Toys for Great Kids

Inspiration for Selecting Toys for Children with SpecialNeeds

Children with special needs are often overlooked whenadults buy toys. Children withcerebral palsy, children with Down syndrome and children with autism all sharetwo very common traits--they are all kids and they all love to play.

Shoppers are sometimes hesitant that they’ll select a toya child with a disability won’t be able to enjoy and opt to purchase videos orclothing instead. Do you rememberback to your childhood and how much fun it was to open that pair of socks orpajamas wrapped up for the holidays?

While there are a few things to keep in mind whenselecting toys for children with disabilities, the great news is … there are aton of toys that will bring joy and satisfaction, and will be suitable fortheir specific needs. Regardless of your child’s interest, age or skilllevel, the right toy is out there. Hopefully the following information will serve as inspiration as youwalk the aisles (virtual or real) of your local toy store.

For example: when shopping for gifts for children with autism ….

Focus on a child’s interests. Do they like spaceships, horses, sports or dinosaurs? Think about the books they enjoy or themovies they love to watch. Take amoment to put yourself in their shoes and think about what they mightenjoy. Ask yourself what excitesthis child and brings her joy?

For example: when shopping for gifts for children with Down syndrome …

Focus on a child’s abilities. Often relatives tend to think about what struggles a childhas rather than what they can do well. Family needs to look back at all the advances a child has made over theyears and realize that today is just another base point from which to moveforward. For example, if the kidlikes to dance to music, there are a ton of toys that do everything fromencouraging the child to play an instrument (improves small motor skills) tomotivating them to rock and roll with the music (improves gross motorskills).

For example: when shopping for gifts for children with cerebral palsy …

Focus on skill level and then push it a little. The wonderful thing about toys and playis that they are a super motivator for kids to push beyond their limits. In fact, when a child is lost in theact of play, he or she departs from the world of reality into one where allthings are possible. In thatmental state, every day barriers tend to fade and the child believes they arethat super hero, that rocket ship pilot and that race car driver. Look for toys that push up against someof the areas your child is struggling with and you and your child might both beamazed.

For example: when shopping for gifts for children with special needs …

Focus on instilling an interest. One of the greatest parts ofchildhood is that so many things are new. Going to the zoo for the first time is exciting and a realadventure. Maybe your child willdecide that he or she love camels or elephants or bats. When returning home from any new activity,ask them what they loved and remember it the next time you need a toyidea. Another approach is toshow the child what you love and enjoy. Maybe you like trains or dogs or have a love of art. Introduce the children in your life tothe things you love and watch for those that spark their interest.

Before your purchase you can look for any specialfeatures the product you selected might have to make it more appropriate for achild with special needs. So don’t opt out of toy shopping for the child with special needs inyour life. The look on their facewhen they open a new toy this holiday is their gift to you.

Auditions for Youth Advocates with Disabilties

2012-01-30T13:20:00.000-05:00

Sharing the Voice of Diversity and Youth: Auditions for Youth Advocates with Disabilities!!!

*Sharing the Voice and Diversity of Youth: *

*Auditions for Youth Advocates with Disabilities*

Be a part of an exciting Global Disability Advocacy and Education Project! If you are between the ages of 12-30, you are eligible to be part of a global education project. You may be selected to share your voice in a user generated disability etiquette video. For more information please contact Elizabeth Pope Program Coordinator, World Enabled/Pineda Foundation for Youth at: liz@pinedafoundation.org

After signing up you will receive instructions on how to audition. The Deadline to Apply is: *February 10, 2012.* The Online application can be found here:
https://docs.google.com/spreadsheet/viewform?rm=full&formkey=dFp1Vk1HdllJUXB5S2d0MS14cW93MlE6MQ

<https://docs.google.com/spreadsheet/viewform?rm=full&formkey=dFp1Vk1HdllJUXB5S2d0MS14cW93MlE6MQ>

December 2011 & January 2012 Recommendations

2012-01-29T17:00:00.000-05:00

I wish a blessed and happy 2012 for each of you! Thank you for sharing and allowing me to share throughout 2011.

Our Life
PTSD and the Special Needs Parent - I agree completely
Notes From A Dragon Mom - yep, recommending this one again in case you missed it!
Bloom Burden of Complex Kids Not Whole Picture
Does Every Child Matter?
Don't Be Shy
Courage
teacher joins the special needs ranks
The Freedom To Tell It Like It Is
Messengers... Our Duty as Parents of the Disabled
Sustaining Life...
Dear Shopper Staring at My Child
Being Retarded
An Apology from Your Child's Former Teacher
What If You Had Autism for a Day? by Debra Japzon Gillum
5 Things Never to Say to a Special Needs Parent
5 Things You Should Know
Listen to my Words
Bullying Doesn't Have Rules
From the Darkness

Helpful Tips & Resources

It may be December, but I personally need to remember this hint. Riley cannot possibly swat away mosquitos. I am always finding some mysterious bite from some sneaky bug.

No More Mosquitoes: Place a dryer sheet in your pocket. It will keep the mosquitoes
Here is an open Facebook group with lots of helpful information: Severely mentally and physically compromised children
Tax Report: Special Tax Deductions for Special Education
Accessible Travel Tips
Free apps for Special Needs Parents
Patient Loving Care Toolkit - free download
The First Steps to Improving a Child's Drooling

RECYCLE

The Clubfoot Project - Donate old AFOs In Uganda and Papua New Guinea they are utilizing used AFO's. "We accept its not ideal to recycle AFO's but there is no local skill for making custom splints. So it's a matter of having enough pre-loved AFO's to find one to fit the required foot. The kids are actually lucky if they get a pair of shoes to help maintain position."

ESE

Understanding Special Education: Downloadable guides for the IEP & 504
Top 10 Ridiculous IEP Comments

Disability Paradox
A Fate Worse Than Death

Remembrance
Now I Lay Me Down To Sleep: Free portraiture photography to families suffering the loss of a baby.

Accessories, Toys and Adaptive Sports
Tubie Friends educational stuffed animals for children with feeding tubes

AblePlay - play products for children with Special Needs
Setting the Stage for Successful Performances p. 13
Crossfit is for EVERYONE - Saratoga Highschool

In NEED of Support
Cooper's House: Cooper is my 3 year old son who suffers from cerebral palsy. We had a custom playhouse built for him to aid in his therapy. Our neighborhood association is making us get rid of it. Read my letter to my neighbors for the whole story.
Freedom Waters Foundation slide show by volunteer
Freedom Waters Foundation January 2012 News

Health & Safety
Fat Means Fast
Needy Meds
Register your Child with Police

Books, DVDs, Magazines & Reference
New Documentary
Top Films for the Differently Abled
2011 Family Cafe Questions and Answers
Walk A Mile In Their Shoes - Bullying and the Child with Special Needs

Wildlife - May not fit with the rest but it's important too

Wildlife Waystation: Funded solely through corporate and foundation grants, private donations sponsorship and bequests, the current recession has seen donations drop 50% Our financial situation is the worst in 35 years.
Adamholic
Keep Me Wild

Just Because
Team studies 'Police Integrity Lost"

Bully
Bully on the Bus, ebook

Humor
Well, He Did Ask...

Horse ranch helps kids with special needs - ABC-7.com WZVN News for Fort Myers, Cape Coral & Naples, Florida

2012-01-27T15:23:00.000-05:00

Horse ranch helps kids with special needs - ABC-7.com WZVN News for Fort Myers, Cape Coral & Naples, Florida

Riley's Week

2012-01-27T13:34:00.002-05:00

Cheating the Stander

Dr. Steve's regular Monday with Riley... welcome Dr. Eric too.

Another day hanging out in a doctor's office for Ronan. Thank goodness for the DS!

Riley sings to Miss Claudia. She was in Romania far too long and he's very excited to have her back.

Waiting again... hey, get your own DS.

Naples Equestrian Challenge article today on

Magic of changing lives: Naples wine festival, pros team up to teach kids tricks

It's been a pretty good week... Stacie Wiesenbaugh

Healing, Empowering and Thriving: "Non-Person Humans"

2012-01-27T12:44:00.000-05:00

Healing, Empowering and Thriving: "Non-Person Humans": Elie Wiesel “We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with ...

Painting for Hailey: I am the child

2012-01-26T13:16:00.000-05:00

Painting for Hailey: I am the child: I have posted this one in the past, but since I have so many new readers, I thought I would repost. It is so important for everyone to under...

Senate proposes sweeping overhaul of disabled care | The Florida Current

2012-01-25T13:42:00.000-05:00

Senate proposes sweeping overhaul of disabled care | The Florida Current

Hi,

Right now, President Obama is making final decisions about how much funding he'll request for programs that serve children with special needs. These vital programs are chronically underfunded – so the President's decision could dramatically affect the futures of millions of children with disabilities.

Please join me in asking President Obama to increase funding for programs that help kids with special needs succeed. Just click here to send him your message: https://secure2.convio.net/es/site/Advocacy?cmd=display&page=UserAction&id=540

Every year, more than 1 million children go undiagnosed and untreated for their disabilities – but we can help ensure they get the treatment they need by letting President Obama know how much we care. As someone who cares about people with disabilities, I hope you'll send a letter too.

Thanks!

Tell President Obama: Increase federal funding for children with special needs!

FWF Creates a Promo!

2012-01-23T13:36:00.001-05:00

Debbie, our PIC Respite Caregiver, and I gathered up the boys and headed down to Naples Boat Club last Saturday. Our other Debby, Freedom Waters Foundation Executive Director, had video interviews planned down by the boats. We got to hang out on Lady Serenity while we waited our turn.

Debby Frenkel (FWF), Riley and Sheryl Soukup (NEC). Photo by Jim Meyersburg.

The interview and camera was handled by the adorable Paul Gessler, a Reporter for ABC7 & NBC2.

Paul aboard Lady Serenity. Photo by Jim Meyersburg.

I certainly stumbled over my words... but at least I had my two handsome sons beside me. I cannot wait to see how it comes out!

We are all Special... by Stacie Wiesenbaugh

Special Needs Magazine Jan/Feb 2012

2012-01-23T13:15:00.000-05:00

http://www.mydigitalpublication.com/publication/?i=97070&p=1

The latest on Kaetlyn - by Christine

2012-01-19T13:44:00.000-05:00

Below with her blessing, I share a letter from Kaetlyn's mom, Christine. The letter is beautiful and very personal. She is living another version of my reality, It makes us "sisters."

"Stacie, I share this with you because I do believe we are "sisters" as only those of us that share this reality can truly understand what it is to live on the edge with our children on a daily basis. I know our trials our different, but yet in many ways the same... I am always more than happy to share our experiences with others out there who may be experiencing their own challenges so they too may know that they are not alone on this journey through the life of a special needs family. Please feel free to post with my blessing... I will keep in touch and let you know for sure the final plan once we see the orthopedic; at the very least I know we will be moving forward regardless with the hysterectomy.

Love and Miss you Guys!

Christine"

You may recall Kaet's story as shared in these posts:

My Life's Reality

My Fragile Child

Womanhood Hit Her Like a Ton of Bricks

Letter from Christine dated January 16, 2012

Hope this email finds your family well!

I am writing to let you know the latest on Kaetlyn's "womanhood" issues.

Our continuing saga of womanhood that began last May...it has been a roller coaster ride to say the least as we cannot get her cycles (or should I say lack of)under control. Even using the birth-control pills that have continuous hormone for 3 months, Kaet was and is still getting her period every 2 1/2 to 3 weeks and the days leading to it are horrendous! - The crying and screaming are enough to make me nuts and nothing seems to help. Once she actually starts we are at least blessed with a few days of relief and happiness.

Her gynecologist ran in to us in the parking lot of the therapy center back in November to see how things have been for Kaet. It was then that I told her all we have been going through...I wanted to give the pills and her cycles a chance as I know it can take some time to regulate, so I did not call her prior to this to let her know what we have been going through. She calmly let me know that we have other options and to come see her when we had time. I finally made the appointment after getting through her latest orthopedic surgery and recovery. It' hasn't even been a month since Christmas and Kaet has had to "cycles" ! Enough is enough...

We sat down today in her office and went over everything we have been though with the irregular cycles and the fact that we had to change spasticity meds because the ones she was on (and were excellent in controlling her spasticity) had contraindications with the use of birth control pills. We discussed changing to another type of pill, but yet again wouldn't we be in the same boat was my concern; isn't it highly likely that the effectiveness of the pill was possibly inhibited by all the other Meds she is on? This according to the Dr is a valid concern.

Our next options were surgical: Thermal ablation (burning out the lining of the uterus) with tubal ligation (typing tubes; since we know Kaet will never be having children of her own free will) or hysterectomy (only removing the uterus). We weighed the pros and cons of each carefully and decided that the hysterectomy would be the most definitive as it is possible for the lining of the uterus to grow back after thermal ablation. Please know that I have been researching and contemplating both of these already and I have to say this is a SUPER TOUGH decision to make to have your child go through yet another surgery, but is it fair for her to have to go through the pain and discomfort of a period every 2-3 weeks either?

At this point in time my mind is made up that we will proceed with the hysterectomy and for now, we are taking her off the birth control since it is ineffective anyway, and this way we can get her back on her "good" spasticity meds. I did mention to the Dr that Kaet will most likely be facing another orthopedic surgery later this year to secure the other clavicle, so she suggested and her pediatrician (we saw her today for a physical) did too that we see about coordinating the surgeries so she only has to go through it one time and be all done...that is where I leave off, we will be seeing the ortho at the beginning of Feb for her follow up from the last surgery so I will see at that time if he is willing to do it the same time as the hysterectomy.

I sure hope and pray this all comes together and works out in the end; I hate having to make these decisions in caring for Kaets needs, but I don't know what else to do to to get my girl comfortable...It breaks my heart either way; seeing her miserable going through the pains of cycles or going through surgery to prevent them. I feel in my heart this is the best choice and that maybe Kaet can finally stop hurting in the long run. I will keep you posted as to our progresses...

Until then, I hope you and the family stay well ...and I am praying for another LONG stretch for Riley with his seizures! :)

Christine

Dear reader, I hope you understand the challenge faced by Kaetlyn's family in an effort to do the very best they can for Kaetlyn's welfare. As special needs parents we face dilemma's that we could never have imagined as we prepared to welcome our precious child into the world. Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions. We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.

We are all special... Stacie Wiesenbaugh

2012-01-18T13:38:00.002-05:00

The Company Store:

White and Black Market, Chico’s & Soma

You’ve been wondering how to get in ...

Now is your chance!

Chico’s welcome’s Freedom Waters Foundationto a shopping spree, at

The Company Store

March 9, 2012

4:00—5:30 pm

Tickets: $35.00 each

Hurry, tickets are limited.

Accessories (earrings, bracelets, necklaces, watches, scarves, belts, shoes, purses) - $6, tops, bottoms, and lingerie - $6, dresses and jackets- $11, gowns, suede, leather or specialty items - $21. All prices include Florida State sales tax. 10% of purchases donated back to FWF. More details to come with reservation.

Submit reservation and payment:

Freedom Waters Foundation

The Company Store with FWF

895 10th St. S, #302-D,

Naples, FL 34102

www.freedomwatersfoundaton.org

info@freedomwatersfoundation.org

https://www.facebook.com/freedomwatersfoundation

Day Break (Brake)

2012-01-13T12:09:00.002-05:00

Opening my eyes the sky was lightening with the break of day. Already past 6 am, simply still being in bed at this hour is a blessing. I took a moment to appreciate the quiet for a moment. The day is a little easier to face than it used to be. Riley rested and in turn I rested.

A sharp intake of breath and a quick rhythm followed. Up, lights on and over to Riley in full seize. Gathering him us and trying every trick in an attempt to stop that seize as fast as it came on. One minute goes by. "Riley, mama is here!" "Riley, come back to mama!"

A second minute goes by. Time to pull out the Diastat for seizure intervention. No, I object! "I am right here with you, Riley! How can I help you."

I know it's time. No, wait another moment. It must stop. Drug intervention means both our days are gone. We need our days. Intervention means that nothing will happen in our day beyond the recovery of that drug. "Please Riley, it's time to stop." We have reached two and a half minutes. Put him down mommy and get the drugs! No! "You can stop this, honey."

Losing our day. It has been one of our patterns in life. This is Riley's life. This is my life. No, we are trying for Riley's sake.... for my sake... for the sake of this family to have a little bigger life than this. We must have our day. Riley can go to school and play music and laugh with his teachers and classmates at circle time. I can try to be an adult and get a life. We must all move on beyond Riley's birth circumstances.

It is time for drugs now!

Putting Riley safely down on my bed while I set up the syringe... the seize finally slows and stops. Just in time.

Then the next reaction begins with leg spasms. Big, strong, frightening, stressful leg spasms. One foot shoots out with a tow poking into my gut. Can I get my arms around him enough for comfort while trying to alleviate his pain? A forearm hits my head and a little hand grabs desperately pulling at my ear and hair before flying open again. "Mommy is here Sweetheart... I'm trying to help."

Five minutes go by in constant spasm. And then 10 have gone by in what looks nearly like a battle. Soon it is nearly 7 am. Riley's tired body begins to relax. I set him up comfortably on my bed and prepare for his school day. He needs his day. I need his day. Very soon we will both have forgotten this past hour and moved along.

I return to change his clothes and am greeted with a smile. "Oh Sweetheart, you are beautiful. Good morning to you." Sigh, wet bed clothes... think I'll start my day washing sheets... again....

School art by Riley

We are all special... by Stacie Wiesenbaugh

A Smile for Dad

2012-01-10T13:44:00.001-05:00

Riley may still not be able to sit up... but connecting with his family has come a very long way. Here Riley gazes back at dad and laughs for the camera. Little miracles still happen.

The Disabled (ALL) Creed

2012-01-01T21:16:00.004-05:00

Yeah, the Ghost Writer again (aka, husband/father/john). This post is from "an inspired non-believer." What I am inspired by/what I believe in (that is for me). What you take away from these writings, if anything, is for you.

The background of this post: For Catholics andNon-Catholics, I am Catholic and look to God (the Church at times, but mainlyto God). This is my version of theNicene Creed (Google it):

The Disabled (ALL) Creed

I believe inthe potential of a disabled person, a maker of tears of joy/sorrow, and Creatorof that which I have become and am willing to defend.

I believe inmy Son, Riley, begotten by God's Will and at times a stranger to the world we(the functioning) take for granted. Hitby seizures, forces unknown, nights without peace, rises again and teaches meto appreciate every small thing in life (a laugh, a sound, a smell, a step). Night after night, day after day, inaccordance with God's Will he is my son and his story I will share with you (ashe shares it with me).

His Story,for those readers and for our understanding, was given to me by Heaven andincarnate by the Will of God and cast upon to tell this (his/our) story so thatwe may appreciate life, love, suffering and healing.

I acknowledge the limitations that they (thedisabled have); and I look to help them overcome their limitations and fightfor their cause, in this world, until they find peace in The Next.

I believe in the Helping Guides-- the parents,the relatives, the friends, the supporters and the caregivers; who come to usto overcome limitations of the disabled.

I believethat this is one messed (*edited) up world. I believe that life is not always fair. I acknowledge the limitations of humanity/the disabled and the way theworld is; and I look to make it a better place for the disabled (all) and thosewho care for them; pray for them or are willing to understand their world (andif I am Blessed enough, share mine).

This is myStory.

Linking up:

Stacie's Theory of Relativity

2011-12-29T13:15:00.000-05:00

Stacie's Theory of Relativity....

R.espite

E.quals

L.oving

A.ll

T.hose

V.alue

I.n

T.he

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

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

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

It is spending timewith a spouse and remembering why you got married or even said hello tothem.... creating futurememories.

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 orthought you would be)...

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

It is spending time with a child and forgetting thedisability...

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

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

Written by my Sweetheart

My Honor: NECs December Volunteer Spotlight

2011-12-17T11:00:00.001-05:00

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.

VOLUNTEERSPOTLIGHT

Stacie Wiesenbaugh

Movedto Naples from: LosAngeles, CA Year movedto Naples: 2004

Whydid you move to Naples?:

Ourfirst child, Riley, experience a massive brain hemorrhage in utero. His traumaticbirth caused us to make many changes to our lifestyle which included moving tobe closer to family. We decided uponSWFL where my mother spends the majority of her time.

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

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

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

GettysburgCollege, English Lit. B.A.

BrooksInstitute of Photography, Media, B.A.

SpecialNeeds Kids, I have my S.N.K. degree (graduated on 8.28.2002 (birth of son)) andstill pursuing.

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

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

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

Hobbies/sports:

ScubaDiving & Photography

Ibecame a Naples Equestrian Challenge volunteer (month/year):

Ithink that if you have a child with Special Needs, you need to be there forhim/her. When Riley turned 3 fall of2005, we joined NEC. I wanted to bethere for him and give my time to a cause that I truly believe in.

Volunteerareas:

Ibecame a volunteer at NEC because it was the agreement parents and caregiversmade as part of the rider contract. Myother Volunteer activity is volunteering my husband for things! NEC is a "family orientedthing." I am one of Riley's regularside-walkers, but not necessarily his favorite. This year I took on another volunteer area as fundraiser. Chico's, offered an opportunity for ashopping day in The Company Store, a sample sale warehouse, and the proceedswere returned to NEC. The event tookplace in September and I hope to make it a yearly event with even greaterattendance in the future.

Someof my most memorable NEC moments are…

Growingwith NEC. I started when the arena hadno roof (those were some hot days, but fun for the kids). Watching the Volunteers grow (we have photosof young boys and girls who have stayed with the program so long they turnedinto kids with braces into amazing adults).

Iwill always remember our first visit to NEC. At that time, Riley was challenged by motion and car rides wereparticularly miserable. He had cried onthe drive and I was regretting taking him out at all. It was a hot quiet summer day and the placeappeared deserted. I pulled Riley fromhis car seat and as I brought him into the sun a strong breeze struck uscarrying 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.

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

MYother comment:

BeingVolunteer of the Month is not expected. Particularlybecause there are SO many people "behind" this organization who arenot out in the arena with the horses/kids who are so deserving... Being a part of NEC is not about being atNEC when the kids ride. It is about thefamilies sharing education/being there for each other; the staff who do thisnot for the money, but the love of what they do; the people who because ofphysical or other challenges cannot side walk, but give their time in countlessother ways. The amazing sponsors wholiterally built a roof over my son's head when he walks and hung fans to coolhim. There are so many facets to NECthat we can all partake in. I am Blessedto be a part of such an organization.

Otherorganizations & positions held:

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

Someof my previous volunteer positions:

Wildlife Waystation,Level II volunteer

Volunteer, The JuniorLeague of Los Angeles, Marketing Committee

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

CaliforniaCoastal Commission recognition 1993 1994, 1995, 1997

tripledturn-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

Someof my previous employment positions:

US Census Bureau, 2010Census, Ennumerator

Library Foundation ofLos Angeles,

Lead for theCity of Los Angeles Campaign, Liaison for The Council, Library AssociatesMembership

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

The Nature Conservancy

Earth Share of California,Campaign Manager

The Polar Express Chair

2011-12-15T10:25:00.000-05:00

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

2011-12-14T15:21:00.001-05:00

On November 2nd, I received this unexpected email:

Congratulations!

Youhave been selected by the Program Committee as the October 2011 VolunteerSpotlight.

Yourphoto and tribute will be displayed throughout the month in the display caseoutside the Volunteer Hospitality Shed.

Onbehalf of the staff and volunteers we thank you for your dedication andcontinued support of Naples Equestrian Challenge. You help out in so manydifferent ways and you truly deserve to be spotlighted.

Iam attaching a Volunteer Spotlight bio guide for you to fill out and return tome 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!

2011-12-12T14:31:00.001-05:00

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

2011-12-06T14:30:00.000-05:00

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

2011-12-05T12:31:00.001-05:00

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

2011-12-02T12:32:00.001-05:00

Now I Can
Now I Can New Documentary Book

Interview with Jolene Philo: A Different Dream for My Child

2011-12-01T14:00:00.001-05:00

As a new blogger, I quickly discovered JolenePhilo's, Different Dream during my search forother parent bloggers of children with disabilities. Different Dream soon became a reliable andsensible resource for my own special needs life. I have been honored by being permitted anearly look at A Different Dream for My Child.

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

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

1. Seriouschildhood illness and the needs of parents makes people feel uncomfortable. Howdo you find the strength to reach beyond your own experiences to help thespecial needs community?

Jolene: My strength comes from thecompassion inherent in shared experience. The memory of the isolation myhusband I experienced while parenting our son with special needs compels me toreach 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 aspecial needs child, new parents are unlikely to have the time and energy topick up your guide prior to the first decisions they must make... if you wereto make a list of the most important lessons you would like them to know intheir first days would you please share them here?

Jolene: You’re absolutely right. Most parentsdon’t have access to Different DreamParenting or any other book immediately after diagnosis. I advise parentsfacing unexpected, immediate decisions to pray together, then assess theoptions, choose as best they can under the circumstances, and trust God to dealwith the rest. Once the immediate decisions are taken care of, parents shouldcontact their insurance company, if the situation warrants that, to updatethem. After that, parents must tap into an emotional and spiritual supportsystem. They can start a CaringBridge page to update others and receiveencouraging notes. They might contact a pastor. Of course, I’d love to havethem visit DifferentDream.com for resources and support, too.

3. Whena child has serious illness or condition, the focus is on the child, but the familyas a whole needs support, too. My own family now receives services through alocal hospice program for children with life altering illness and theirfamilies. Have you found similarprograms available throughout the country and if so are there any that come tomind as exceptional?

Jolene: While doing the researchfor Different Dream Parenting, I interviewed the coordinator of the Pain andPalliative 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 onceconsidered terminal.) Their program is the model for programs around thecountry. Most large university and children’s hospitals should have a hospice,pain and palliative care, grief, or bereavement department. I suggest parentsfind the one closest to them geographically and tap into it.

4. Theoutward changes in the lives of parents of very sick children are visible. Butwhat internal changes do the parents experience? How does it affect themspiritually and emotionally?

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

Emotionally, many parents of kidswith special needs wrestle with grief and guilt. These are perfectly normalemotions for their circumstances, but they don’t realize that. Again, those issuesare discussed in detail in DifferentDream Parenting.

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

Jolene: The most important thingyou can do is to use the child’s name. Many people shy away from saying thechild’s name because they think it will hurt the parents. But parents who havelost children tell me they love to hear their child’s name. Doing so is areminder 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 askthem if they want to talk and follow their lead. Send cards on the child’sbirthday, the anniversary of the diagnosis, the anniversary of the death, onMother’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. Letthem laugh.

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

Jolene: I suggest parents writedown their hopes and goals for their children’s futures and share them. As soonas or if kids can verbalize their own hopes and goals, write them down andshare them, too. Also, make a portfolio for your child. Include items yourchild 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, Iknow kids behave differently at home and school.)

7. Itis often difficult for the rest of the family - siblings, grandparents, aunts,uncles, and cousins to understand what the special needs family isexperiencing. How do parents educate thesefamily 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 withparents, 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 thechild’s condition

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

arrange for some adult-only timewith them now and then

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

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

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

ForHe who did not spare His own Son, but delivered Him up for us all, how will Henot with Him freely give us all things? My hope isthat other parents will also find hope and comfort in the God who understandsexactly 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.

November 2011 Recommendations

2011-11-30T14:00:00.024-05:00

Each of these links speaks for itself. Thanks for coming by and exploring.

Our Life

If you are not a caregiver, imagine yourself repeating this moment every day of your child's life and attempting to live your life around these moments: Day 5000

A Meal In Three Courses

Deep, Deep Down
Like Other People
We had the same ache in our hearts (impact on marriage)
Kids of Depressed Dad's
Quantifying Quality
a day in the life: Sue Mayer - Special Needs Mom
Do You Wonder What Life Could Be...
The Right Thing to Say
Marriage Balance
The Secret
Who Needs Fathers
Finding a Different Way

Instructional

Ian's Shoelace Site

Sensitivity & Training

Talking to Your Child's Classmates about Special Needs: 5 Things You Should Know

Student Disability Video
Six Practical Tips to Promote Inclusion in the Classroom
Young Children with Special Needs
school sensitivity Training video
Explaining Special Needs to Your Child: 15 Great Children's Books
Understanding... The bigger picture
What's Wrong with You? (The Best Conversation of Our Lives)
Don't Welcome Me to Holland Lady
Stress Management

Medical & Diagnosis

Have You Ever Thought...
Med 101
Bee Aware of Epilepsy
Understanding Medical Terminolgy on Prescriptions
Etymology of Neuroscience Terms
Brainline
5 Things Doctors Won't Tell You

Toys & Creative

Song for those with Disabilities - MP3 or words: Worship Matters
Interactive Auti Toy
Down Syndrome Exhibition - Dublin Arts Council
Special Needs Toy Guide
Photographing in the NICU/World Prematurity Day
Toy Guide with and without Disabilities

Books, Magazines, News & Periodicals

Struggle for Care: Mother Fights to Get Special Needs Son Back Home
How the Special Needs Brain Learns
Good Health News
Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs
FFDD News
Freedom For Ayn
Special Needs Book Review

Television & Radio

OWN show audition by Zach Anner
Man with Cerebral Palsy to host own show
Family Network Radio

Special Class Blogs for ESE Ideas

A Special Kind of Class

The Schroeder Page!
Kindergarten Crayons
Extra Special Teaching
Life In Special Education
Adaptations for Kids
Rainbows Within Reach

Connecting

Spiritual Directors International
Forum for Families
Net Buddy UK
Sibs.org.UK

Bully

Shut Up About Your Perfect Kid

Behavioral

Does Special Needs Dampen Teen Sexuality?

Accepting Entries for Different Dream Parenting

2011-11-28T11:41:00.000-05:00

Different Dream Parenting Book Giveaway

Please enter the comments below and share your name and your preferred contact information. You may also use the email button instead to the right of the page under "Stacie's & John's Links." Should you be willing, I would love to hear a little about the child in your life along with your entry. Multiple entries are welcome with additional comments. Giveaway entries will be accepted through November 30th. The winner will be determined by a drawing with Riley's help.

The book is available at 10% off the retail price:

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

Thanksgiving Day 2011

Hope you all enjoyed your holiday!

Current Issue | Parenting Special Needs Magazine

2011-11-27T11:07:00.001-05:00

Current Issue | Parenting Special Needs Magazine

Seizure #93

2011-11-25T11:18:00.001-05:00

I have been counting Clonic Seizures. There are so very many I missed but this is my attempt to keep track. Tonic Posturing Seizures are completely beyond counting and we just help him through as quickly as possible and move on with our day. Anyway, Riley had had some spasms in the night and was willing to sleep while I got some breakfast; while I was out of the room he went into a pretty big seizure. After receiving the Diastat rescue medication he still went on for 15 minutes. Holding him on my lap, I could feel the convulsions throughout his little body and see the discomfort across his brow as his eyes and lips fluttered and twitched.

It's hard to be thankful and appreciate life when our little one must live this life. I comforted him quietly hoping to allow Ronan to enjoy his pirate ship building and for John to proceed with his diving plan. But, John discovered us soon enough and wanted to cancel his day. Please go. We both need a little normalcy somehow. I insisted he go on his way but I know he will fret about Riley all the day long.

This is no life. No one deserves this. Not Riley. Not his family. And the lectures to appreciate my life, family and blessings from the oh, so many individuals who have no idea what it means to live this life are not only unwelcome but resented. Hey, heck of on invitation to participate here isn't it.. oh, well. That's how I feel.

Fortunately for Ronan, my mom was willing to drop Ronan for his planned playdate. He cannot spend his life cooped up as if he were special needs as well.

SeizureTracker.com: "November is National Epilepsy Awareness Month and the Epilepsy Foundation is asking everyone to Get Seizure Smart. By taking and distributing the Get Seizure Smart quiz, you are helping us reach our goal of getting 5 million Americans seizure smart in 2011. "

Not very thankful... Stacie

Different Dream Parenting: A Giveaway

2011-11-18T12:06:00.000-05:00

Do you follow the Different Dream for My Child blog by Jolene Philo? It is a wonderful special needs resource. Now comes the book. And I have one to share in a Giveaway!

Different Dream Parenting:
A Practical Guide to Raising a Child with Special Needs

Ms. Philo is kindly allowing Rileys-Smile to give away a copy of this invaluable resource. I am so excited and ask that each parent/caregiver/family member of a child with disabilities to please enter my giveaway.

Excerpt

I Didn’t Sign Up for This,God!

Haveyou ever had one of those dreams whereyou can’t move? The car is racing toward the edge of a cliff and you can’t liftyour foot to press the brake pedal. An attacker is breaking down the door toyour house and you can’t raise your arm to dial 911. Your child is about to runin front of a truck and you can’t open your mouth to scream.

Mybad dream became a reality in 1982. My husband and I stood beside our son’sisolette in the neonatal intensive care unit. An IV needle pierced Allen’s tinyarm, and angry red scars crisscrossed his chest. One end of his feeding tubehung on a pole beside his IV bag. The other end rose from the soft skin of histummy. Pain etched his wide forehead and tugged at the corners of his perfectrosebud mouth.

Morethan anything, I wanted to reach out and take his hurt away. But I was trappedin a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned meto love and care for this beautiful child, I could do nothing to minimize hispain. My thoughts were an inward scream. This isn’t what I signed up to do,God! I don’t want to be a helpless onlooker. I want to parent my child. How canI care for him? What can I do?

Asthe parent of a child with special needs, you’ve probably experienced the samesense of helplessness. Whether your child is critically or chronically ill,mentally or physically impaired, develop- mentally or behaviorally challenged,you want to do something. You want to ease your child’s pain, but you don’tknow how. You want to help your child realize his or her full potential, butyou don’t know where to begin. You want to ask God about your child’ssuffering, but you don’t want to be condemned for questioning His wisdom. Youwant to believe God is with you, but you don’t know how to find Him.

You’restuck in a bad dream. You can’t move. You can’t speak. You want someone toshake you awake and tell you everything will be okay. Instead, you wake up andmust become the parent you never expected to be. You doubt that you’re up tothe task. You’re worried about your child’s future. And you’re wondering, Doesanyone understand what I’m experiencing?

Theanswer is yes, many parents understand your situation. In the United States,

• 10–15 percent of newborns, or 431,000annually, spend time in neonatal intensive care according to the March ofDimes.

• 12 percent of children between ages 1and 17 had medical conditions serious enough to require hospitalization between2004 and 2006, the most recent years for which statistics are available at theCenters for Disease Control and Prevention.

• 13.6 percent of students between ages 6and 21 were enrolled in some kind of special needs program according to theNational Center for Educational Statistics. That’s 706,000 of our country’sschool-aged children.

Lotsof kids mean lots of parents, dads and moms who are valuable sources ofinformation and advice. In this book, dozens of them share with you the wisdomthey gained while parenting kids with special needs.

Supportcan also come from the surprising number of professionals who work withfamilies of kids with special needs. These professionals—and the resourcesthey’ve created—are available at hospitals, medical facilities, governmentagencies, private organizations, businesses, schools, churches, and more.

Thisbook brings you advice from professionals around the country and providesinformation about national organizations and resources. It also gives tipsabout where to start searching for state and local resources. More often thannot, your problem won’t be a lack of resources, but a lack of awareness of themor inability to access them.

Different Dream Parenting contains six sections: Diagnosis, Hospital Life,Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising aSurvivor. Each section is divided into four chapters. Three chapters addresspractical issues. The last chapter in each section addresses spiritualconcerns.

Parentsof kids with special needs often wrestle with prickly spiritual questions. I suredid. Sometimes I still do. So do all the parents interviewed in this book, andmost of the professionals, too. Every day, we continue to ask questions aboutour kids’ lives and futures. Gradually, we learn more about how to trust God’stiming and wait for His answers.

Asyou read this book, please ask your faith questions. Read about how parents andprofessionals learned to ask questions, wait, and listen. Consider the answersthey have discerned and their suggestions about how to find comfort and couragein God’s Word. When you are ready, try out their ideas about how to pray anduse Scripture to hear God’s answers to your hard questions. The thirty-dayprayer guides in appendix A are designed to help you engage in conversationwith Him.

Buteven with prayer guides and Scripture to guide you, I know how hard it can beto trust the God who is allowing your child to suffer. So I won’t condemn youfor asking prickly questions. Instead, I’ll encourage you, cry with you, andsupport you when your faith grows weak. When you can’t hang on a minute longer,I’ll hold you close until your strength and your faith return.

Ihope this book helps you break out of your bad dream, wake up, and move forwardwith joy and confidence. I pray that the stories of parents and professionalsin this book will give you hope and strength.

Most of all, I hope youdiscover the truth God has revealed to me and many other parents. Raising achild with special needs isn’t a bad dream. It’s just a different dream. Andsurprisingly, a different dream can be the best dream of all.

Entry: Different Dream Parenting Book Giveaway

Please enter the comments below and share your name and your preferred contact information. You may also use the email button instead to the right of the page under "Stacie's & John's Links." Should you be willing, I would love to hear a little about the child in your life along with your entry. Multiple entries are welcome with additional comments. Giveaway entries will be accepted through November 30th. The winner will be determined by a drawing.... perhaps Riley will rummage around a hat for us to make the choice, I'll ask him.

The book is available at 10% off the retail price:

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

Speak Now for Kids! Support Programs that Keep America's Kids Healthy

2011-11-16T13:32:00.000-05:00

Speak Now for Kids! Support Programs that Keep America's Kids Healthy

Our Life

2011-11-15T13:09:00.001-05:00

It feels like we are drowning again. John and I have been on catch up ever since the trauma of Riley's birth and the challenging life it left in its wake.

John did an amazing job as The Bootstrap Boogie volunteer photographer last Saturday evening. Our computer is now filled with revelers in our barn and on the mechanical bull. We expect to discover some of the shots in the Naples News this week. Now we may need to redefine "tired" when it comes to John.

There has been plenty of stress and not the least of it being health. Riley had a long challenging weekend - no one needs those details. Not long ago John suffered a bad ear infection which we treated with antibiotics. We thought it was taken care of... We also kept him from his passion during the healing process and he has not been diving in over two months. Sunday evening his one and only filling fell out which was very strange. Monday morning, while waiting for a flat repair he decided to walk over to the dentist.... missing work all the while. He then discovered the infection and spread throughout his sinuses and was destroying his teeth as well. He has now had a root canal and will be having a crown, another round of medication, and we hope that no other teeth meet the same fate.

In the meantime, I am struggling with the demands of taking Riley so frequently to meet with medical specialists. Monday was the Pulmonologist. It took the entire morning and as you can expect that was all driving and waiting. Tomorrow is the Opthalmologist, but I find I must cancel. I cannot manage it right now. It's all about tracking and covering every one's butt. But, it's at the expense of Riley's energy, my time and energy, the wear and tear on the jeep and of course the incredible cost of gasoline. Do these sound like legitimate excuses. Likely not. But at some point we should get to live our lives rather than shuttling around to doctor's offices.

Not feeling so special today... Stacie

Must Read

2011-11-10T14:17:00.000-05:00

I am very fortunate to have an early copy of Different Dream Parenting: A Practical Guide to Raising A Child With Special Needs by Jolene Philo. I am eagerly looking forward to finishing the book and putting the knowledge to use... oh, and filling you in too! Meanwhile, I strongly recommend that you explore her blog, Different Dream, which is a sensitive and thoughtful resource for special needs.

Appointments and Illness

2011-11-09T15:34:00.000-05:00

There is so much I have planned for this blog and so much I want to say... However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up. He did really well. He is always so cooperative and pleasant. This year, we opted to give him a flu shot. Yes, it's controversial. However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter. Trust me on this. I've done it and I don't like putting Riley or any of the family through it if it can be helped. A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful. One thing we always cover is the well-being of Riley's parents - yep, that's John and I. We ride an emotional roller coaster. This is another on-going subject that I have been avoiding. Admittedly, we are challenged by our role in life and being 9 years behind. I do not actually care to delve into this today - in fact, I am unsure when I care to get into this. For now, let's leave it at the fact that being a Special Needs Family is not particularly easy. The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others. I object. I believe that it is far more than simply can you handle special needs or not...

The special needs community frequently uses the phrase "a bullet is a bullet." Really, I do not think all bullets strike the same. When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others. Fine, object with me. This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu. As usual, joke is on us. It has been a rough couple days. Riding Monday evening had to be cut short as he began to whine as he was jostled around. I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider. This was another surprise to me. The rider also had multiple disabilities, and she was considerably older and large than Riley. I had to mentally brace myself for the next half hour of hard work. To my great surprise, she sat up herself and held her reigns. I was simply there for safety. No leaning on me. No sneezing on me. No pushing arms and elbows into place for proper weight-bearing. This was unbelievably easy. Could I possibly say to her family, "Wow, she's easy to work with!" Somehow, I doubt they would agree. Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked! Where was I going with that? Riley was sick. And was he sick. I was replaced as a side-walker to remove Riley from the ring. Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours. Then on home we went. Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important. When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process. Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.

This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.

There was more to say, but my time is up. At 3:30 pm my day is done as the end of the school day has arrived. Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.

We are all special... I think... though I complain and want to compare bullets with you... by Stacie Wiesenbaugh

How to Throw the Best Children's Party

2011-11-07T13:06:00.000-05:00

To throw a great children's party plan ahead, send out your invitations early,ask your child what they would like to do, have some sort of theme and organisesome entertainment.

Beingorganized is the key to throwing a great children's party, so plan ahead anddon't leave it to the last minute. Ask your child what they would like to dofor their party, and if the idea isn't too outrageous, consider going alongwith whatever it is they would like to do. You might find that there is someactivity that is all the rage with the kids at the moment, so it will save youhaving to dream up something special. With really young children party games athome are still popular, but children about eight years and older generally likea bit more entertainment. There are plenty of party hire ideas, and depending ontheir age, you may choose to organise a petting zoo, a clown, have a fairyparty with a visiting guest or have a snake handler provide the entertainment.

Ask yourchild what they want

Unlessthe idea is completely ridiculous or way over your budget, you might want toconsider taking the advice of your child in regards to what they would like todo for their party. Often there is some playhouse or park that is popular withthe kids at school, or they have been to a party somewhere and they would liketo have their party at the same place. Perhaps they have a few ideas about whatthey would like to eat or when they want to have it. It is their party afterall so it doesn't hurt to find out what they want to do.

Invitations

Chooseinvitations early and set a date as soon as you can. If your child is oldenough they will be able to distribute them amongst their friends, but if youfeel that they might not reach the intended party guests you could send them bymail or email. You might be in contact with the parents of your child's friendsvia a social networking site, so you could let them know this way, or sendingaround a text message is just as effective.

Theme

Choosinga theme for a child's party can be a great idea because it then sets the tonefor the whole event.If you choose a theme you can then tie in the invitations, have childrendressed up in costumes, have food and decorations to suit and even provideentertainment that all matches in. For younger girls you might want to have afairy party, a princess party or have a pink party, where absolutely everythingand everyone is pink. Older girls might like a disco or to come dressed up astheir favourite television or movie characters. Boys are happy with piratethemes, spooky parties or having some sort of sporting theme. Older boys wouldprobably not like a theme so much, but rather would like to go somewhere like ago-karting track or skate park.

Entertainment

Children'sparties often seem to have fairly extravagant entertainment nowadays, but youdon't need to do this if your budget won't allow. Younger children are happywith party games like 'Pass the parcel' or 'Pin the tail on the donkey'. Youcan hire all sorts of different entertainment, from clowns that do balloonanimals, to having a fairy or princess arriving to delight little girls, orhaving a mobile animal farm in your backyard. A lot of children's magazineshave advertisements towards the back with many different party entertainmentideas.

2011-11-03T20:34:00.000-04:00

Support Your Local Economy: Make it A Direct Selling Only Holiday

Inside These Lines

Love life and be gentle: 31 for 21 Ten Commandments for Helping Parents w...

2011-11-02T12:49:00.001-04:00

Love life and be gentle: 31 for 21 Ten Commandments for Helping Parents w...: Have you ever wondered what parents of a child with special needs wants to here about their child from friends, family members, and strang...

October 2011 Recommendations

2011-11-02T10:23:00.000-04:00

Just realized that I am even behind in my monthly recommendations. It appears to be November and here I am sharing the best of October recommendations.

I've been in scramble mode just getting through the day.
There has been plenty of decorating driven by Ronan. They designed a very cool jack-o-lantern that began to mold in a minute despite our prevention efforts.

I attended Candy's Meditation at Debby's home last Thursday.

Also, as a family we had a wonderful time at friends for a weekend Halloween party.

Riley came home wearing a sticker, "Say NO to Drugs!" The very next morning I said yes to drugs with Diastat to stop a seizure.

Please explore my recommendations, in no particular order so just see what catches your attention. These wonderful writers offer insight and inspiration. I invite you to return here with your own insights and comments. I thank you for stepping along a little on our journey! Stacie

Creative
Capturing Special Children

Books & Resources

No Ordinary Boy
Film: Willowbrook
The Noodle

Our Life

Trained Idiot
Einstein Syndrome
Smallest Wingless
Amazing Things We Do
Note to Self: Open Your Eyes
Gunning the Emotions Engine
I Know Different
Luxury
Notes From A Dragon Mom: New York Times
A Different Road
Mercy Me - Hold Fast
"i" is for isolation
Being a Foreigner In A Foreign Land
Simply Morons

Action
Corkscrew Boundless Playground
Best Buddies
Teaching Kids with Special Needs to Cope with Bullying
Special Needs Financial Guide
Register to Vote - Florida Div. of Elections
Florida Unites is launching an aggressive campaign to get people who are interested in disability issues to vote.

Relating
Questions

Education
I'm Not Your Enemy
Homework Solutions

Freedom Waters at the Stone Crab Festival

2011-10-27T12:50:00.002-04:00

Come one - Come All! Freedom Waters at the Stone Crab Festival - This Weekend!!! Oct. 28-30, Friday -Sunday - all day - Tin City

Incredible Raffle Items - Private Yacht Cruises, Fishing Package, Hotel Stays, Restaurants Galore and More!

Kids Activities - Bounce House, Face painting, Fun!

Live Music from Pinchers Stage!

For more information about the event, link to - http://www.stonecrabfestival.org/

Rain or Shine - We will be there! Hope you will too!

Thank you!

Debby and all the Freedom Waters Foundation Friends

Debra Frenkel, LCSW

Executive Director/Founder

Freedom Waters Foundation

895 10th Street South, Suite 302-D

Naples, Florida 34102 - Main office

(239) 248-1120 P

dfrenkel@freedomwatersfoundation.org

Cinnamon's Spicy Life Awards Riley's Smile the Liebster Blog!

2011-10-26T13:33:00.001-04:00

The Liebster Blog Award!

Thank you so much Cinnamon, I am honored to be in your company!

You always bring me a smile, even when you share life's challenges.

You have my full admiration.

Dear Reader, please hop on back to Cinnamon's Spicy Life and check her out... you'll be glad you did.

I love awards! The funny thing is that I'm not writing or even blogging really. I'm just trying to wrap my head around our life. Hopefully, I help someone else get special needs along the way.

On with business...

in Cinnamon's words the Liebster Award works like this:

"... awards are wonderful. It shows that someone else thinks that your writing is worth a crap, and that they want someone else to check you out too. The ONLY downside of these awards, is that you must pass it along. In this case, to 5 other bloggers. They should have less than 200 followers. This award is designed to help boost their readership by encouraging others to follow them. BUT, that is the hard part. Finding new bloggers to help. Most of the ones that I follow and think are really great bloggers, already have huge followings….because they are so awesome."

Here’s the rules for this award.

1. Copy and paste the award on your blog.

2. Thank the giver and link back to the blogger who gave it to you.

3. Reveal your top 5 picks and let them know by leaving a comment on their blog.

4. Hope that your followers will spread the love to other bloggers.

You may not have noticed... but I have a theme... special needs. As I mentioned earlier today, it rattles around my head. I would like to pass on the award to some of the special needs blogs which I suspect to be under 200 followers (though it can be hard to tell for sure).

Today's Liebster Blog Awards from Riley's Smile

Flight Platform Living

About the Small Stuff

I am Fearfully and Wonderfully Made

Free As Trees

Life with a Severely Disabled Child

and since Cinnamon awarded only two I am stealing hers and adding

Special Happens

Thank you to each one of you for
being part of my blogging experience!
Stacie

I Notice

2011-10-26T11:16:00.001-04:00

This is one of those morning's when the special needs aspect of mylife 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 specialneeds life does not take us down the average path and my vantage pointsometimes takes me in odd and frustrating directions.

Today, I am simply focused on the little behaviors that Iinterpret as revealing a person as dismissive of those around them orcaring. Now, I must remind myself to notbe so black and white or even judgmental because I certainly resent beingjudged. So, perhaps I'll just leave thisas 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'sbus (bus 27127 is quite reliable and calm recently). It is my neighbors who show incredibledisrespect during Riley's pick up and drop off in front of our home. On many occasions neighbors have passed bythe bus while lights are flashing and Riley is loading. Last May, I fired off an email to my communitynot even thinking about who the latest lawbreaker may be: I simply knew I wasangry 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 theirlack of respect and consideration in this matter. Thank you."

Response:

"Iknow you are speaking of me as I passed the bus thismorning. Thered lights flash the entire time the door is open. Your child is being loadedfrom the house side. There is never anyone on the street side. Are yousuggesting everyone sit and wait the entire time the loading process is goingon? I will make sure I never leave the community by going past your house againso as to not upset you."

Ishared my frustration with another friend and neighbor who seemed toempathize. This week, same neighbordrives right around the bus with flashing lights. ?. Shall I take this as my opinion and thelaw are not as important as your needs Dear Neighbor? I saw you. Now what should I do? Pretendthat I did not?

WhileI was busy ruminating on the lack of respect toward my child, I drove up toRiley's school to collect him for physical therapy. Being the quiet lunch hour I parked at thefront circle, threw open the jeep hatch and arranged the ramp before bringingRiley out to the car. When I returned tothe 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 carI 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 hadseen me do before, slid the heavy chair into the back of the jeep, folded upthe ramp and was closing it all up nice and neat.

Howdo I react to this? This is an amazinglykind and sweet gesture. How many timeshave I loaded that chair in my own driveway, hugely pregnant and had every maleneighbor - and at the time one lived in every house two to the right, two tothe 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 tohave helped over time and I remember them. I will always remember them.

Yes,it's a big deal to me. Thank youJamie! You are pretty wonderful.

We are all special... by Stacie Wiesenbaugh

NEC's Spooktacular

2011-10-25T10:22:00.000-04:00

Sunday found us at Naples Equestrian Challenge for the Fall Spooktacular. The staff and volunteers did an amazing job creating a fun event for their riders and families.

To see the horses in their outfits take a peak at the Facebook page for Naples Equestrian Challenge. They even managed a shot of Ted the Scuba Diver before he decided he was too embarrassed by his costume to greet the kids.

Willowbrook: How the government abused children with special needs | Friendship Circle -- Special Needs Blog

2011-10-24T12:57:00.001-04:00

Willowbrook: How the government abused children with special needs | Friendship Circle -- Special Needs Blog

Dare to Share Linking on Sunday

2011-10-22T21:52:00.000-04:00

Riley Met A Goal

Halloween Costumes?

2011-10-20T13:19:00.004-04:00

So much excitement around here. Halloween approaches. We do our best to have Riley participate in all the fun. Below are links for Special Needs costume ideas. Hope you find something helpful. Feel free to share your own ideas or costume links in the comment section. Stacie

Halloween Costume Ideas for the Handicapped

MDA Costume ideas

Costumes for Children with Sensory Integration Dysfunction

Halloween Costume Guide for Special Needs: "I wanted to share some Halloween costume ideas for kids with sensory and mobility issues. Includes costumes that can be worn with sweat shirts and sweat pants, cut out costumes, costumes requiring no masks or make up and costumes incorporating wheelchairs. Also includes links for learning how to trick or treat"
Autism and Halloween
Making Halloween Fun for Special Needs
Make Halloween Enjoyable

Waiting

A Special Cafe

2011-10-19T12:00:00.000-04:00

Maggie World: Luxuries

2011-10-18T10:34:00.001-04:00

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...