Tuesday, October 9, 2012
Thursday, March 1, 2012
Monday, February 27, 2012
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!!
Thursday, February 23, 2012
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
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"
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"
Saturday, February 18, 2012
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
Friday, February 10, 2012
FDLRS Open Lab Nights
PARENTS-
YOU ARE CORDIALLY INVITED TO ATTEND…
FDLRS
Open Lab Nights
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.
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
Thursday, February 9, 2012
The 2nd Annual Naples Equestrian Challenge 5k Run/Walk
The 2nd Annual Naples Equestrian Challenge
5k Run/Walk is scheduled for Saturday, February 18th 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.
Parking is at the North Naples United Methodist Church.
We
encourage online registration at www.gcrunner.org.
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