Monday, January 30, 2012

Auditions for Youth Advocates with Disabilties

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:

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:


Sunday, January 29, 2012

December 2011 & January 2012 Recommendations

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 
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.
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."

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

Disability Paradox
A Fate Worse Than Death

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 HouseCooper 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.
Keep Me Wild

Friday, January 27, 2012

Thursday, January 26, 2012

Painting for Hailey: I am the child

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...

Wednesday, January 25, 2012

Senate proposes sweeping overhaul of disabled care | The Florida Current

Senate proposes sweeping overhaul of disabled care | The Florida Current

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:
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.

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


Monday, January 23, 2012

FWF Creates a Promo!

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

Thursday, January 19, 2012

The latest on Kaetlyn - by Christine

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! 

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

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

Stumbo Family Story

Wednesday, January 18, 2012

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

Friday, January 13, 2012

Day Break (Brake)

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

Tuesday, January 10, 2012

A Smile for Dad

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.

Sunday, January 1, 2012

The Disabled (ALL) Creed

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 and Non-Catholics, I am Catholic and look to God (the Church at times, but mainly to God).  This is my version of the Nicene Creed (Google it):

The Disabled (ALL) Creed

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

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

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

I acknowledge the limitations that they (the disabled have); and I look to help them overcome their limitations and fight for 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 us to overcome limitations of the disabled.

I believe that 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 the world is; and I look to make it a better place for the disabled (all) and those who care for them; pray for them or are willing to understand their world (and if I am Blessed enough, share mine).

This is my Story. 

Linking up:
Things I Can't Say

Stumbo Family Story