These Broken Vases | Finding Beauty in Unexpected Places: Cerebral Palsy and Independence {and a CP Connection}

These Broken Vases | Finding Beauty in Unexpected Places: Cerebral Palsy and Independence {and a CP Connection}

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

Riley's Smile has moved.

Please join us at our new address:

http://www.rileyssmile.com/

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

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

Last Saturday evening an unusual event happened.... John and I went out alone.  It was a little disconcerting as this has only happened a handful of times since Riley's birth.  It only happens with considerable planning.  Saturday, however, was an important 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 had dinner and movie plans with his grandmother, aka Kappi.  This left us free to drive away... after 6 pm in the evening.  As John observed, we were driving after dark!  Parents of only typically developing children lament the few moments they get alone together and make great fuss over date nights, yet somehow they seem to happen at a fair rate of regularity - at least from my perspective.  Special Needs Parents must go to extraordinary lengths for the same moments.  During this extremely rare event it is still difficult to not be wondering 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, our own health and well-being.  It also would not hurt to spoil ourselves on a rare occasion.  Driving south on Tamiami toward Naples, I noticed the local Persian restaurant I wanted so much to try.  "One of these days we are going to eat there," I swore outloud.  The matter-of-fact answer back, "We tried, remember.  They don't have take-out."  No take-out clearly precluded us from having anything to do with any establishment.  As disturbing as that answer was, it was also true.  No Persian food for us.  That did not stop me from rolling my eyes at John and repeating this crazy answer  several times throughout the evening as if I lived in some other reality and the only thing stopping me from eating where I wanted was John's reluctance to 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 her tiara and even better John drumming along with the Cuban drummers.  That happened when I was without camera in hand unfortunately.  Without the crazy woman in a tiara, our lives would be just a little less.

A brief conversation with Kate, an FWF volunteer, brought me back to my reality when I was asked where the boys were.  Actually, I am almost surprised to be recognized without them by my side and in my arms.  I explained how fortunate we were to have a respite nurse that evening, sharing that we now receive 150 hours a year of respite.  This has been one of the greatest gifts of our life.  The response was unexpected, "Is that all!  In Alaska, 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 those budgets and taking from one fund to boost another.  Services change, times change, budgets change and attitudes change.  even when services exist they can be quite challenging.  Do residents even know they exist?  Is the age range wrong, the diagnosis, the family income?  Perhaps the family has no energy left to pursue anything at all.  Now, this is a scenario John and I understand all too well.

Going forward with this blog, I would like to explore the current situation of each state.  Not an in depth exploration as I do not have the access to such information.  I would however, over time, like to find some of the perceptions with the status of special needs services and lives throughout the country.  This should also be approached with the understanding that there will be as many different experiences in any given area as there are special needs families.

As I mentioned earlier, it is possible for many useful events to be happening.  Knowing about it is yet another.  My previous post is an alert to the FDLRS Open Lab Night.  I learned about it at last Friday's Parents as Mentors, a group of Lee County Schools ESE parents.  The flier was shared widely be a Lee County Schools employee.  Yet, I passed 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 to her attention and they sent it home with every student in the school.  Now, why is it so difficult to disseminate information?  Really, I would like to know why this happens.  The school was so happy to know about it, how is it that they are in the same school system with no notice of a useful event whatsoever?

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

We are all special... Stacie Wiesenabugh

FDLRS Open Lab Nights

PARENTS-

YOU ARE CORDIALLY INVITED TO ATTEND…

FDLRS Open Lab Nights

Florida Diagnostic Learning and Resource Services

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

If you are interested in attending an Open Lab Night please contact:      

Jennifer Kuehl or Kristen Emeric for more details.

Jennifer Kuehl, Parent Services Specialist 239- 337-8539
Kristen Emeric, Technology Specialist 239-337-8589

Open Lab Nights are:

March 7, 2012      10 am -12 noon    or   5pm- 7pm

April 25, 2012     10 am- 12 noon     or    5pm- 7pm

May 9, 2012         10 am- 12 noon     or     5pm-7pm

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

The 2^nd Annual Naples Equestrian Challenge 5k Run/Walk is scheduled for Saturday, February 18^th at 7:30am.

 

If you have not already signed up – there is still time!!!

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

We encourage 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

Parents of children with cerebral palsy need to be encouraged to play with their children.  In fact, children who  do not have access to the play experience can be negatively impacted in their development, overall health and both their physical and mental well-being.  The same is true for children with spina bifida and muscular dystrophy  and those who experience a whole host of muscular and skeletal challenges. 

The good news is that there are current toys out there that can fit the bill or that might just need a little modification to make them appropriate.  Finding these play products gives parents the ability to delight and inspire a child with cerebral palsy and encourage a connection to play.   

So what should parents, family or caregivers look for when they are shopping for the kid in their life with some special needs?  Ellen Metrick, Chief Toy Evaluator of AblePlay, a website devoted to connecting children with cerebral palsy and other disabilities to appropriate toys, offers some advice.  “There are really two perspectives parents 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 she currently has, or secondly, they can look for toys that will move the child towards the abilities she or he is working towards.  Both are valid ways to begin the search for play products.”    

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

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

Outside play sets are another great option. Parents should make sure they purchase one that is built well and provides stability for the child.  If the child is in a wheelchair, make sure the play set openings are wide enough to accommodate a child, has activities that can be reached, and includes any support they may need. 

Toys that are stable themselves.  Look for toys that can fit securely on a wheelchair top or that have suction cups, rubber or Velcro on them to increase stability.  Metrick also advises, “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 have some air taken out can increase a child’s ability to grasp it.  Drawing materials and crayons now come in ball and triangle shapes that make it easier for a child to use and enjoy.  Metrick advises parents to take the time to search a little, since there are lots of great options out there for kids of all abilities. 

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

this in that

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

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

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

Hanging with Riley

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

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!

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

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

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

Disability Day at Capitol

Disability Day at Capitol

Gifts for Children with Cerebral Palsy

Finding Great Toys for Great Kids

Inspiration for Selecting Toys for Children with Special Needs

Children with special needs are often overlooked when adults buy toys.  Children with cerebral palsy, children with Down syndrome and children with autism all share two very common traits--they are all kids and they all love to play.   

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

While there are a few things to keep in mind when selecting toys for children with disabilities, the great news is … there are a ton of toys that will bring joy and satisfaction, and will be suitable for their specific needs.  Regardless of your child’s interest, age or skill level, the right toy is out there.  Hopefully the following information will serve as inspiration as you walk 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 the movies they love to watch.  Take a moment to put yourself in their shoes and think about what they might enjoy.  Ask yourself what excites this 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 child has rather than what they can do well.  Family needs to look back at all the advances a child has made over the years and realize that today is just another base point from which to move forward.  For example, if the kid likes to dance to music, there are a ton of toys that do everything from encouraging the child to play an instrument (improves small motor skills) to motivating them to rock and roll with the music (improves gross motor skills). 

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 play is that they are a super motivator for kids to push beyond their limits.  In fact, when a child is lost in the act of play, he or she departs from the world of reality into one where all things are possible.  In that mental state, every day barriers tend to fade and the child believes they are that super hero, that rocket ship pilot and that race car driver.  Look for toys that push up against some of the areas your child is struggling with and you and your child might both be amazed.

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

Focus on instilling an interest.   One of the greatest parts of childhood is that so many things are new.  Going to the zoo for the first time is exciting and a real adventure.  Maybe your child will decide 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 toy idea.   Another approach is to show 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 to the things you love and watch for those that spark their interest. 

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

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

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: 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

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...