Welcome!

Celebrating Abilities Inc. started as a support group located in southwest Florida for parents of children with different abilities. We are no longer active as a group because we've all moved on to other areas of the United States. I've decided to keep the blog active so that information can be shared with our loyal families and some new ones, too.

If you have any further questions, please contact:
hawkinsj68@gmail.com or ceenic123@aol.com


Have a blessed day!

Tuesday, April 22, 2008

Ronald McDonald House

We've utilized the wonderful services at Ronald McDonald House and I can't ever repay them for their kindness and generosity........except possibly NOW:


http://www.ronaldmchouse.com/RMHC_0000_file%204-08.pdf

3rd Annual Pennies from the Heart Campaign - April 1st through May 3rd. This campaign, sponsored by the News-Press, Naples Daily News and the Gulf Coast Town Center, will be conducted in Lee, Collier, Hendry, Glades and Charlotte counties. WINK-TV's Lois Thome is the Honorary Chair. In partnership with FGCU, the athletic students and others will pick up the pennies from area schools and businesses taking part in the campaign. It combines the power of children with the fun of collecting pennies to bring awareness and raise money to help support the Ronald McDonald House Charities of SWFL and the Care Mobile of Collier county. The following events are planned to support this campaign:

Count Day - May 3rd - Pennies will be counted at the McDonald's Restaurant at Gulf Coast Town Center. Schools, businesses and other participants will be able to bring their collected donations for a fun-filled day with raffles, prizes and a special guest.

FGCU Baseball Double Header Post Pennies Volunteer Acknowledgement - May 10th - This event will commence at 1:00 pm with Ronald McDonald throwing the first pitch. FGCU athletic students and others will be recognized for their volunteer efforts in the campaign.

Take That!!! School Bullies!!!!

Brought to you by AutismLink
Dear Subscribers:

This is probably one of the most amazing and inspiring videos I've ever seen, and if you have a child who is being harassed by school bullies -- get out your hanky. You must see the courage of this 13 year old boy who has been the victim of bullies all of his life simply because of the music he likes. But in the end, he shows them all. And the compassion and inspiration comes from -- of all people -- Simon Cowell.

This isn't the best quality video but you must see this. It will make your day, I promise.

http://www.youtube.com/watch?v=e8cXvomrtfw&feature=related

Cindy Waeltermann
Director

APRAIS

The Alliance to Prevent Restraint,
Aversive Interventions, and Seclusion

http://www.aprais.org/index.html

Vision

All children should grow up free from the use of restraint, seclusion, and aversive interventions to respond to or control their behavior, and free from the fear that these practices will be used on themselves, their siblings or their friends.



Every day in this country, children with disabilities are needlessly being subjected to harmful practices in the name of treating "challenging behaviors." They are brought down to the ground and straddled, strapped or tied in chairs and beds, blindfolded, slapped and pinched, startled by cold water sprays in the face, deprived of food, secluded in locked rooms, and more, despite the fact that research and practice show that these techniques exacerbate challenging behavior and do nothing to teach the child appropriate behaviors.

The Alliance to Prevent Restraint, Aversive Interventions and Seclusion is a joint effort of the nation's major disability advocacy organizations, formed in response to this alarming problem.

Alliance members are working at the national level to assure children with disabilities of equal protection across funding systems and service delivery settings. At the state level, we are working to ensure to ensure adequate training and systems of reporting and accountability to enforce these protections. In addition, we are engaging in an aggressive educational outreach effort to assure that individual parents and advocates are knowledgeable and empowered to support each other and partner with APRAIS in effecting systems change.

Mission

To seek the elimination of the use of seclusion, aversive interventions, and restraint to respond to or control the behavior of children and youth.

To prohibit the incorporation of these practices into the education, habilitation, or other service delivery plans provided to children and youth with disabilities.

To promote nationwide consistency in the protections, monitoring, and reporting that will keep children and youth safe from restraint, seclusion, and aversive interventions, ensuring that children enjoy equal rights and protections across all settings in which they receive education, health services, mental health services, correctional services, residential or foster care, and all other services.

To educate our constituencies, providers, policy makers, and the public at large to understand that restraint is not treatment but represents failure to provide appropriate services and supports, that there is no evidence to justify the use of seclusion and aversive interventions under any circumstances, and that tolerance of restraint, seclusion, and aversive interventions:

· Causes serious physical and psychological harm,

· Results in the dehumanization of all involved,

· Prevents the development of respectful and supportive relationships between children and adults, and

· Leads to the segregation and exclusion of children from their communities.

To carry out this mission on behalf of all children and youth, with or without disabilities, regardless of diagnostic label or degree of disability, so that no child is left behind.

APRAIS Member Organizations
National Down Syndrome Society www.ndss.org
TASH www.tash.org
National Disability Rights Network www.ndrn.org
The Family Alliance to Stop Abuse and Neglect www.thefamilyalliance.net
National Down Syndrome Congress
The RespectABILITY Law Center
The Arc of the United States www.thearc.org
Bazelon Center for Mental Health Law www.bazelon.org
National Association of Councils on Developmental Disabilities www.nacdd.org Autism National Committee www.autcom.org

COPAA
P.O. Box 6767
Towson, Maryland 21285
www.copaa.org

NAMI
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
www.nami.org/



It is important that you make it clear to your child’s teachers or other program staff that you expect an environment free of aversives, non-emergency restraint, and seclusion. You should also expect the elimination of emergencies to be a priority. To put this message on record, sign and date a No Consent Letter and have it placed prominently in your child’s IEP or treatment plan. If you have seen warning signs which you believe may result from the way your child is treated at school, or in any situation where you are not present, it is important to ask questions immediately.


No Consent Form

This is a suggested letter for parents to send, adapted by TASH from a letter written by Tricia and Calvin Luker of The RespectAbility Law Center. Please feel free to change and personalize before sending or taking a similar letter to your child's school.

(School District)
(Your address)
(Your telephone number)
(Address)
(Date)

Re: (child's name and birthdate)

Dear (Principal, Program Director, or IEP Team Leader):

My child, (child's name), is a ________ grade student at ______ school. (Child's name) has a disability (or insert label) and is receiving special education services. I want to thank you for all of the help and positive support you and the teachers and staff at name of school have provided child's name over the years.

We are concerned that child's name's behavior challenges are being, or might in the future be, addressed in part through the use of aversive interventions, restraint or seclusion (including seclusionary time-out or procedures referred to as "physical management" or "restrictive procedures"). Examples of these practices include, but are not limited to: forcible holding or dragging, the use of ties or straps, sprays in the face, slaps, deliberate humiliation, deprivation of nutrition or exercise, and time out rooms. This letter is to make clear that I have not authorized and will not consent to any activity that involves the use of any of these procedures at school or while child's name's is transported to or from school. I know that special education law requires the use of a Functional Behavioral Assessment (FBA) which is expected to lead to a Positive Behavior Support (PBS) plan to address behavior challenges. If the school feels child's name's behavior is so challenging that aversive or restrictive procedures, seclusion, time out, physical management, or restraint are being considered or used, it is clear to me that there is need for a FBA and the development of an effective PBS plan. I expect to participate in this assessment and the development of a PBS plan for my child.

I am sure you are aware of the number of news reports in recent years describing the deaths, trauma, and injury of children with disabilities while or just after being subjected to aversive interventions, restraint, or seclusion. I am writing this letter as a precautionary action and to provide clear instructions that none of these techniques are to be used with my child. If any of these techniques are currently being used, or have in the past been used, it is important that you notify me of this and terminate any use of such procedures immediately.

If (child's name)'s behavioral issues are a challenge now or at any time in the future, I am requesting that a behavior support team meeting be convened to discuss these challenges, plan for an FBA across environments, and begin work toward establishing a positive behavior program to address child's name's particular needs. I wish to exercise my right to participate in all such meetings.

I want to work with you and with (child's name)'s teachers and professionals at name of school to be sure that child's name learns to develop positive behavioral skills in an environment that is safe for him/her, for his/her peers, and for school personnel. I, like you, want my child's school to be a safe and secure environment where all students can learn. I want to work with you to help create that environment.

Sincerely,

(Your name)



Monitor Your Child's Program

Review your child’s records (especially the contents of the education and/or treatment plan, and any “incident reports” in your child’s files), and make visits during which you carefully observe all aspects of your child’s day.

Keep careful records. Document and date anything your child says or does that concerns you; take and date photographs of any suspicious injuries.

Share your concerns with your child's physician, psychologist, or other health care provider.

Report Abusive Practices

There are a number of ways to report abusive practices and seek help

Reporting to State and Local Agencies

If you have witnessed, or have evidence of abuse of a child, you have the right to call the police. The rule of thumb is: if you would call for police intervention to stop this from happening to a child without disabilities, you should call to stop it from happening to a child with disabilities.

Your State Education Agency (SEA) will have a help line, hot line, or other assistance program to which you should report at once.

Disputes involving your child’s rights under the Individuals with Disabilities Education Act (IDEA), state special education regulations, or state school disciplinary laws and regulations can be addressed through the State Education Agency’s impartial due process hearings. You have the right to request a hearing concerning your child’s placement or program at any time, and your request must be granted promptly. Requests are made by sending a letter to your child’s school principal, with copies to your district’s director of special education and/or superintendent. Your letter should state the problem and your proposed solution.

States also may have public interest education law projects and disability law projects that can provide you with important information and may be able to provide direct advocacy.

Some states have established an Office of the Child Advocate to investigate allegations of systemic abuse and neglect of children within that state’s service systems. This can be an important contact, especially when a group of parents comes forward with similar complaints.

All 50 states, The District of Columbia, Puerto Rico, and the federal territories have a protection and advocacy system (P&As). P&As are mandated under various federal statutes to provide protection and advocacy on behalf of individuals with disabilities. To find your state P&A contact information to obtain assistance, go to the National Disability Rights Network website (www.ndrn.org) or call (202) 408-9514.

Reporting to Federal Agencies

The Office for Civil Rights (OCR) in the U.S. Department of Education provides the primary administrative enforcement for Section 504 of the Rehabilitation Act and for the Americans with Disabilities Act (ADA), two civil rights statutes that address discrimination, equal access, and reasonable accommodations, as these laws apply to schools.

*

Section 504 prohibits discrimination against persons with disabilities on the basis of their disability. To demonstrate violation of Section 504, parents would need to show that aversive techniques, restraint, or seclusion were used on students with disabilities who engaged in certain behaviors, but were not used on students without disabilities when they engaged in similar behaviors.
*

The ADA addresses the need for accommodations and access in public places and might be involved, for example; if a student is restrained or secluded "for his or her own safety" when environmental modifications would have made this unnecessary. Complaints about the use of restrictive and unsafe practices, and lack of the accommodations that would make these practices unnecessary, can be lodged with OCR for investigation. If necessary, all OCR and SEA hearing reports may also be appealed to federal court.

Complaints under the Civil Rights of Institutionalized Persons Act (CRIPA) can be made to the Civil Rights Division of the U.S. Department of Justice (DOJ). CRIPA gives the DOJ authority to bring legal action against state and local governments for permitting dangerous conditions and unsafe practices that violate the civil rights of persons placed in publicly operated facilities, including schools.

Join With Other Advocates Nationwide to End Abusive Interventions

The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) was founded by major national and state disability organizations to address prevention from several directions. We are working at the national level to assure children with disabilities of equal protection across funding systems and service delivery settings, and of adequately staffed and funded systems of reporting and accountability to back up these protections. We are working to convince the states to raise the bar on child safety. In addition, we are partnering with individual parents and advocates, encouraging them to support and inform each other and to act as local watchdogs.

Keep APRAIS informed of what is happening in your state, to your family, or to suggest a link to an article of interest. In turn, we will keep you informed of upcoming opportunities to bring about long-overdue changes in the laws and regulations that should protect our children.

Add to the APRAIS Database by informing APRAIS of an incident involving restraint, aversive interventions, or seclusion



Until all children with disabilities are equally protected under the law from abusive practices — regardless of their disability, where they live, or which funding stream serves them — parents will need to employ a combination of these approaches to ensure their child’s safety.

New Florida package proposed to enchance coverage for children with autism

New Florida package proposed to enchance coverage for children with autism

By Betty Parker
news-press.com Tallahassee bureau

TALLAHASSEE — A new package that would provide enhanced coverage for children with autism was unveiled at a special House committee meeting Monday night, with House Speaker Marco Rubio making an unusual appearance to promote the proposal.

The proposed bill removes caps on full-pay KidCare participants so that any Florida family can buy health insurance that includes coverage for enhanced services for children with autism and other developmental disabilities. It also expands KidCare benefits to include physical, speech and occupational therapy -- and expands the age eligibility -- so that younger children can get enhanced benefits.
KidCare is the state's health insurance program for uninsured children under the age of 19 with eligibility determined by family income.

The proposal Rubio outlined Monday also directs the Office of Insurance Regulation to develop agreements with penalties for private insurers who deny coverage for medically necessary services because of developmental disabilities, and mandates coverage for certain services related to developmental disabilities if a negotiated agreement is not implemented.

The bill also creates voluntary pre-kindergarten programs for children with developmental disabilities starting in the 2011-12 school year.

The measure will go to the House Health Care Council Tuesday for a vote; Monday night’s unveiling involved only brief discussion.

Rubio, R-West Miami, told the House Select Committee on Autism that House and Senate leaders and staff worked over the weekend on the package. "I am here to show commitment at the highest levels of leadership" for the proposal, Rubio told the group.

Although lawmakers are working with a cash-strapped budget and two weeks left in session, there's still time and money get the autism and disabilities package done.

"If we can achieve this, we can be a national model” for setting up programs that help children with developmental disabilities, Rubio said. "It's rare in politics that we get a chance to truly change the way people are living . . . this is a lot of fun. This is more fun than a property tax cut" and will have a greater, more direct impact on the lives of those who have children with autism or other disabilities

Apraxia 2008

Good Morning Everyone,
I am so excited to finally be able to share some of the National Conference information with you! This year the National Conference will be at the Williamsburg Lodge in Williamsburg, Virginia, July 10 - 12, 2008, http://www.history.org/visit/williamsburgHotels/williamsburg
Lodge/. Kate and I had the opportunity to visit the venue and the surrounding area this fall and we had a blast! The venue itself is very homey and lends itself very nicely to a CASANA event.

CASANA was able to obtain special hotel rates at the Williamsburg Lodge, Woodlands Hotel and Suites and the Governor's Inn. There is information on the hotels and booking rooms, childcare and parking on the Apraxia-Kids website, http://www.apraxia-kids.org/site/apps/nlnet/content2.aspx?c=
chKMI0PIIsE&b=699857&ct=5114433.

More information on registration and costs will be coming soon to the website!

The program is really shaping up to be very exciting as well. As of right now, some of the confirmed speakers are...
Christa Aylward, OTR/L
Kate Bauer
Sue Caspari, M.A., CCC-SLP
Candace Cortilla
Lauren Franke, PsyD., CCC-SLP
Sharon Gretz, M.Ed.
Dave Hammer, M.A., CCC-SLP
Rosemary Hardwich, B.A.
Deborah Hayden, M.A., CCC-SLP, SL-P(C), Reg.CASLPO
Kathy Jakielski, Ph.D., CCC-SLP
Nancy Kaufman, MA, CCC-SLP
Amy Newmeyer, MD
Ruth Stoeckel, Ph.D., CCC-SLP
Shirley Storey King, MSEd.
Edythe Strand, Ph.D., CCC-SLP, BC-NCD

Some of the confirmed topics are...
Planning for the Future: A Focus on Transition for Youth with CAS
Treatment of Sensory Integration Disorder in Children with CAS
Challenging Cases
Children with CAS and a Closer Look at No Child Left Behind
Narrative Intervention for children with CAS and Other Language Problems
What's Health Got To Do With It?
Selecting Stimuli for Speech Therapy Sessions
Conduction Your Own Research at School or in the Clinic
determining and Advocating for Appropriate Speech Services
CAS and Literacy Development: Building the Right Team
Speech and Language Goals for Older Children
Introduction to CAS and the Neurology of Speech
Establishing First Words for Children with CAS, Autism and other Developmental Challenges
Brain Based Education: My Journey Named Josh
Relationship development Intervention as a Foundation for Social Intervention
Relationship of Sensory Information to Speech Production
Auditory Processing disorder and Speech-language Problems: What's the connection?
Principles of Motor Learning and Their Implication in CAS Treatment

AND NOW FOR THE REALLY BIG ANNOUNCEMENT!!!!!
On the afternoon of July 12, 2008 of the Conference, CASANA will present Live Therapy Demonstrations!! The children with participate via video feed from an adjoining room. The demonstrations will feature David Hammer, M.A., Nancy Kaufman, MA, CCC-SLP, CCC-SLP, Deborah Hayden, M.A., CCC-SLP, SL-P(C), Reg.CASLPO, and Edythe Strand, Ph.D., CCC-SLP, BC-NCD, This is sure to be one amazing, not to be missed afternoon!

RECRUITMENT OF WORKSHOP CHILD FOR THERAPY DEMONSTRATION
CASANA is recruiting children between the ages of 3 and 10 years old with apraxia of speech for the 2008 National Conference on CAS in Williamsburg, Virginia, July 10 - 12, 2008. The children will participate individually in a "live" therapy demonstration (via video-feed to the workshop) on Saturday, July 12th. This is an educational workshop and the demonstration is educational and is not considered treatment. The selected children will participate in a demonstration with one of the featured speakers, David Hammer, M.A., Nancy Kaufman, MA, CCC-SLP, CCC-SLP, Deborah Hayden, M.A., CCC-SLP, SL-P(C), Reg.CASLPO, or Edythe Strand, Ph.D., CCC-SLP, BC-NCD. They will be located in a nearby separate room with the presenter and a live video-feed will project the sample treatment session to the main workshop room for observation by the audience which will consist primarily of speech-language pathologists and families. Please visit the Conference page on the Apraxia-Kids website for more information on how to volunteer, http://www.apraxia-kids.org/atf/cf/{145BA46F-29A0-4D12-8214-
8327DCBAF0A4}/Demonstration_Recruitment_Information[1].pdf.

As you can see, there is much to be excited about! There will also be information soon on the website regarding different sponsorship opportunities.

CASANA will once again sponsor an Exhibit Hall. If you have any suggestions for exhibitors please contact Jeanne Lippert, jeannelippert@comcast.net.

Michelle Nagel is putting together our annual raffle. If you can donate an item or help her out in any way for the raffle please contact Michelle, mpjr@cox.net.

I am also looking for someone who is local to Williamsburg who may be able to receive some boxes that will need to be shipped.

That's all the information that I have to post today, but things are happening daily now, so I will be sure to let you know when I know more and keep an eye on the website; that's where all the latest information can be found!
We would love to see you there!
Kathy Bauer
Mom to Kate (18 and off to college next year) and Andy (16 and off driving soon), both apraxic and both doing great!
and
CASANA Conference Director

Childhood Apraxia of Speech Association
1151 Freeport Road, #243
Pittsburgh, PA 15238

Email: kathyb@apraxia-kids.org
Internet: www.apraxia-kids.org
"2008 Sensory Diet Workshops"



Designing Effective Sensory Diets for Home, School and Community

Faculty: Lise Gerard Faulise, MS, OTR/L, BCP
Toronto, Ontario, Canada –September 19 & 20, 2008
Chicago, IL—October 17 & 18, 2008
Atlanta, GA—November 7 & 8, 2008

This two-day, intermediate to advanced level, presentation is designed to provide a comprehensive understanding of sensory diet application for individuals with sensory processing disorders. Interventions specific to the use of sensory diets for sensory modulation and discrimination disorders will be discussed. Methods to apply clinical reasoning and effective planning will be presented through case analysis. Application of planning to school, home and community will be reviewed. Case study presentations, lecture and small group discussions will allow participants to apply these concepts to their specific populations. The course is designed to address treatment for all ages and populations.

Lise Gerard Faulise, MS, OTR/L, BCP received her Advanced Masters of Science in Occupational Therapy from Boston University. Currently Ms. Faulise is conducting research at the Wolf School in RI and providing private clinical services in the New England area. She is founder of Rehab New England, a private sensory integration-oriented practice in Rhode Island. Ms. Faulise is also co-founder of the Wolf School, a school designed for children K-8 with learning differences located in East Providence, Rhode Island. She has taught at Worcester State College in administration/management, worked as a clinical instructor at Saint Louis University and was director of the Faculty Practice in the Department of Occupational Science and Occupational Therapy. She lectures nationally on sensory processing disorders and the application of sensory integrative techniques in the community and in school-based settings.


LOCATIONS - To Be Announced

COURSE DESCRIPTION

Participants will be able to:

1) Develop understanding of sensory-based intervention in optimizing human performance.

2) Learn to analyze activity for optimizing intervention effectiveness.

3) Recognize the potential and implement sensory diets across the curriculum.

4) Develop sensory diet strategies through home programming and community activities.

5) Understand the joint planning strategies for effective implementation of sensory-based intervention in all settings.



SCHEDULE

Designing Effective Sensory Diets for Home, School and Community
This course meets the requirements for twelve (12) contact hours.


DAY ONE
8:00 - 8:30 Registration/Continental Breakfast

8:30-10:30 Introduction and overview of sensory-based intervention
Sensory diets; rational, creation and planning

10:30-10:45 Break

10:45-11:45 Activity Analysis

11:45 - 1:00 Lunch (on your own)

1:00 2:30 Clinical problem solving sensory-based activities for modulation

2:30 - 2:45 Break

2:45 -3:45 Case Presentation

3:45 - 4:15 Documentation of clinical change

DAY TWO
8:00-8:30 Continental Breakfast

8:30-9:30 Joint planning theory and application to sensory integrative treatment

9:30-10:30 Curriculum planning and immersion model benefits

10:30-10:45 Break

10:45-11:15 Sensory diet planning with families and in the community

11:15-11:45 Clinical problem solving sensory-based activities for sensory discrimination disorders

11:45-1:00 Lunch (on your own)

1:00-1:30 Clinical problem solving sensory-based activities for sensory discrimination disorders
(continued)
1:30-2:30 Case Presentations

2:30-2:45 Break

2:45-3:45 Breakout groups: sensory diet planning

3:45-4:15 Questions and discussion

Monday, April 21, 2008

SPARC 2008

Tuesday……April 15, 2008

Opening Day On-Line Registration



SPARC 2008

“It’s Going to be Great!”

September 20, 2008

8:00am – 4:30pm

Morgan Fitzgerald Middle School

Largo, Florida



www.standadvocates.org



Register on line or download and mail in your registration, but whatever you do, don’t miss out on registering for one of the best Educational and Resource Conferences in the State of Florida. We have lots of wonderful presenters this year and we are almost sold out of exhibitor tables!



Keeping with our goal of making this conference affordable for everyone….. the $25.00 registration fee consists of one adult admission to the conference, T-shirt, conference bag, and a lunch! Guaranteed to the first 500 paid attendees only!

(Please leave anyone under 16 yrs old at home for the day)



Dr. Clayton Wilcox, Pinellas Co. School Superintendent will be our lunch keynote speaker!



We have several surprises in line for the day, so watch your e-mail and the website for further updates! We will be updating the website as exhibitors confirm their attendance.



We hope to have the conference presenter schedule posted by the end of May on the website. Here is the tentative agenda for the day: (Subject to change)



7:00 am Registration Opens

8:00-9:00 Exhibitor Area Opens

9:00-10:00 Breakout Session

10:30-11:30 Breakout Session

11:30-1:00 Lunch / Exhibitor Area

12:00 Dr Wilcox Presentation

1:00-2:00 Breakout Session

2:30-3:30 Breakout Session

3:45 BIG SURPRISE

3:45-4:30 Closing and Door Prizes



Our Gold conference sponsors again this year are Pinellas County School District, The Parent Guide Magazine, and dbSystems, Inc./DELL Computers! Yes you guessed it…. We are giving away another brand new DELL Laptop computer and case this year, and for teachers we have a DELL Interwrite Smart Board. Plus many more wonderful door prizes donated by our presenters, exhibitors and local businesses.



Pinellas County Teachers and employees are eligible for 6 component points and a trade day if available. YOU MUST ALSO REGISTER WITH PCS – LMS SYSTEMS #81000004-NON PCS/ESE. Hillsborough County employees, we are currently working on your process for component points.



This conference has something for everyone…. Parents, grandparents, guardians, teachers-both General Education and Special Education, assistants, therapists, and professionals of all types!



See you in September!

What Do We Know About Autism?

What Do We Know About Autism?

By Dr. Ranit Mishori
Published: January 27, 2008

For resources and more information on autism: http://www.parade.com/health/articles/autism_resources


As a child, I learned how autism turns a world upside down. In our house, it was my little brother who was diagnosed at 3. In the search for a treatment, parents will go to any lengths. I saw that with my parents, and I see it now as a practicing physician. Much has changed in the field of autism, but the need for parents to make decisions in a bewildering terrain has hardly changed at all.

A diagnosis of autism usually rests on three distinctive symptoms: difficulty with social interaction, problems with verbal and nonverbal communication, and repetitive actions or obsessive interests. These behaviors can range from mild to disabling.

Parents may first notice that something is wrong when their child fails to babble or point by age 1 or to speak by 16 months. Some autistic children don’t smile or make eye contact. Others seem to be hearing impaired or do not know how to play with toys. There also are cases in which a child who appears to be making normal developmental progress abruptly loses language or social skills.

Is Autism an Epidemic?

Until the 1940s, there was no autism—in the sense that it was an unrecognized condition. In 1988, when Dustin Hoffman’s Rain Man brought a version of autism to life on film, many of us first heard about it—as an odd, almost-fascinating disorder which was also, apparently, rare.

Fast-forward to today. Autism is front-page news. Celebrities talk about it, Congress ponies up millions for research, and the numbers are startling: One in every 150 American kids has some form of autism, says the Centers for Disease Control. The last 15 years in particular have seen diagnoses rates soar. “It is the fastest-growing developmental disability in the U.S.,” says Dr. Andrew Zimmerman, director of medical research at the Kennedy Krieger Institute Center for Autism and Related Disorders in Baltimore.

No one really knows why the numbers are so high. But there are many theories. The most commonly accepted one centers on how we define and recognize autism. “There has been an expansion in the criteria,” explains Dr. Cecelia McCarton, the director of a school for autistic children in New York City, echoing the majority of mainstream experts.

A broader definition means that there are simply more ways to be considered autistic than in the past. At the same time, parents, teachers and doctors are paying more attention to the symptoms—which tends to lead to higher numbers of diagnoses.

But changes in how children are labeled and diagnosed alone “cannot explain the rise,” says Dr. Zimmerman. Other theories rest on maternal, obstetric or environmental factors that perhaps trigger an innate tendency. “Anything from autoimmune disorders to chemicals in the environment may be involved,” adds Zimmerman. He notes that researchers have been pursuing all of these theories to varying degrees, “but science has not yet pointed us to any concrete answers.” An important study released this month suggests that a genetic flaw that occurs around conception may sharply increase the risk that a child will develop autism.

More than perhaps any brain disorder in history, autism has ignited heated arguments among parents and professionals.

What Is the Best Treatment?

There currently is no single definitive treatment for autism. “One size fits all” does not work. But starting early does. These days, children as young as 1 are being evaluated and treated. “The sooner you start, the better off you are,” says Dr. Mc-Carton. Early intervention works, she explains, because of the malleability of the brain in very young children—that is, its ability to grow and develop when stimulated.

Today, most school-based programs rely on behavioral therapy to stimulate development. The treatment aims to reinforce appropriate behaviors while discouraging the inappropriate. Typically, a child is required to perform over and over a task that autism makes difficult—say, buttoning a shirt—with rewards such as stickers or candy for performing the task correctly. This approach, practiced in different variations and sometimes customized to the individual child, helps some autistic children make eye contact, increase spoken vocabulary and master basic life skills.

Lisa Goring of Manhasset, N.Y., got her son Andrew early-intervention services at age 2. “When we started, Andrew threw tantrums that made it impossible for us as a family to go anywhere,” recalls Goring. “At first we felt lost. But after we found a program, he learned how to speak. Once he was able to communicate, his world opened up.” Andrew made such good progress that he was able to enter mainstream kindergarten. He’s now in sixth grade. Though not at the level of his peers, Andrew functions well with one-on-one support provided by his school district.

While behavioral programs claim a scientific basis, the reality is that it is difficult to test their effectiveness or even to compare one type of behavioral treatment with another. Still, these therapies win general endorsement by most professionals and many public school districts (though insurance companies generally refuse to pay for them).

Do Vaccines Cause Autism?

Most doctors and researchers answer a clear “no” to this question. But the controversy remains alive in the media and among parent-advocacy groups.

Parents in these groups have reported a sudden and dramatic social disconnect—including loss of language—in children who previously seemed to be developing normally. The change occurred soon after the children were given the first dose of the MMR vaccine (to prevent against measles, mumps and rubella), typically at around 12-15 months. These parents adamantly believe that their children’s autism was caused by something in the MMR vaccine or in combination with other vaccines containing the mercury-based preservative thimerosal. They insist that the timing of the onset of autistic symptoms is not a coincidence.

While some physicians and scientists support the vaccine-autism link, the overwhelming majority of medical professionals and mainstream medical organizations maintain that vaccines do not cause autism. This is the position of the Institute of Medicine (IOM), National Academy of Sciences, CDC, American Academy of Pediatrics and NIH. After reviewing the research, the IOM concluded that the evidence “did not support an association between autism and the MMR vaccine.”

In fact, even autistic children who never received the MMR vaccine first show symptoms at around the same age as those who are vaccinated.

Is There Hope?

Parents of autistic children should not despair. “Many kids do very well and adapt to their situation,” says Dr. Lee Marcus, clinical director of the pioneering TEACCH program in Chapel Hill, N.C. Since the 1960s, the program—now mandated in North Carolina—has been combining behavioral and developmental therapies, with parents as co-therapists. “There can be progress and optimism about the future. Society is more accepting. Many people do a good job teaching kids with autism.”

Indeed, the road ahead for people with autism depends on the attitudes of the rest of us and our willingness to create opportunities for jobs, for education and for inclusion. “We know our son will always have challenges,” says Lisa Goring, “but we feel very fortunate that we found people who understood how to teach him. He’s different, but his friends absolutely accept him. He has a community.”


Does It Work?

Experts say that nearly 80% of autistic children are given complementary treatments, including special diets and nutritional supplements. “I know of more than 300 treatments being used by families,” says Dr. Paul Law, a pediatrician and father of an autistic child, who created the first national online database on autism. But experts caution that there is little solid scientific evidence for most treatments. Among the most popular:

Elimination diets. These generally allow no casein (found in virtually all dairy products) or gluten (found in most grain-based foods). Many parents report improvements in their children’s functioning. But some professionals say the diets will only work for children who are truly allergic. One warning: Children on restricted diets could end up with nutritional deficiencies. Always talk with your child’s doctor before starting a new regimen.

Secretin. This naturally occurring hormone controls digestion and has been prescribed for gastrointestinal conditions. In 1998, some researchers suggested that a secretin deficiency could cause autism. Hoping for a cure, some parents gave IV infusions of the hormone to their children. But after a series of trials, NIH researchers concluded that there was no evidence that secretin was effective as a treatment for autism.

Chelation therapy. This is an accepted treatment for the removal of toxic levels of lead. Some have argued that autism is caused by a buildup of heavy metals (such as mercury) in the body. No rigorous scientific studies have shown any benefit to chelation therapy. Moreover, it has been associated with serious side effects.

Thursday, April 17, 2008

Autism Votes... It's time for lawmakers to listen

Dear Florida Advocate,

WOW! What a day in the House yesterday for HB 1291! In less than 24 hours, the autism community more than doubled the cosponsors pledging their support of HB 1291 that will end discrimination against children with autism from 30 to 73. GREAT JOB EVERYONE!

Today is a day to celebrate our success, but our job is not over. We need to call them back once more and thank them for their commitment to our children.

WHAT CAN YOU DO?

1. CALL your Representative. Visit www.autismvotes.org/florida to see a list of the cosponsors and determine if your Representative did indeed sign on to cosponsor the bill.

2. EMAIL a follow up thank you note to thank the Representatives tha have cosponsored HB 1291, once again stating how important this is for your family and the future of your child to be able to receive the therapies and treatments prescribed to them.

3. If your Representative has not yet cosponsored the bill, DON'T WORRY. Today is a day of thanks. We are not going to pressure the other Representatives to sign on today. There is still time for that. So please HANG IN THERE and spread the word to just call those who have signed on to thank them for their support!

Thanks for your dedication to this issue. Together we can get this done for the kids in Florida if we stay focused and keep our eyes on the prize. There are only a couple of weeks left in the session so stay tuned for alerts on how you can help get this across the finish line!

Have a great day!

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks

Accessible U.S. National Parks

If you are a nature-lover, a guaranteed way to experience the great outdoors is by visiting a national park. The United States has some awe-inspiring parks, but the question is: Which parks are accessible, and how accessible are they?



First of all, in terms of specific accessibility requirements for national parks, in my research I couldn’t find much on the subject. All of the parks are different; while Management Policies state commitment to providing accessible features for people with disabilities, they also say that “The National Park Service will provide persons with disabilities the highest feasible level of physical access to historic properties that is reasonable, consistent with the preservation of each property's significant historical features.”



By “highest feasible level,” the National Park Service means that while it would not be feasible to make a remote and difficult hiking trail accessible, it is safe to say that any area of a park that you can reach via a standard motor vehicle should be accessible (camping grounds, buildings, etc.)



That being said, an essential feature for park visitors with disabilities is the America the Beautiful – National Parks and Federal Recreational Lands Pass – Access Pass. This pass is free and is a lifetime pass for U.S. citizens/permanent residents with disabilities:
https://pwrcms.nps.gov/pwr/fees_passes.htm


“The pass admits the pass holder and passengers in a non-commercial vehicle at per vehicle fee areas and pass holder + 3 adults, not to exceed 4 adults, at per person fee areas (children under 16 are admitted free). ..The Access Pass provides a 50 percent discount on some Expanded Amenity Fees charged for facilities and services such as camping, swimming, boat launching, and specialized interpretive services” (National Park Service).



While all National Parks are mandated to have some level of accessibility, below is a list of five popular national parks and their accessibility features:



1) Rocky Mountain National Park-Colorado http://www.nps.gov/romo/planyourvisit/access.htm
This park has multiple options for accessible trails, including Sprague Lake, Coyote Valley Trail, Bear Lake, and Lilly Lake. These trails are anywhere from a half-mile to a mile long and provide some wonderful scenic views of wildflowers, spruce forests, and lakes. There is also a wheelchair accessible backcountry campsite near the Sprague Lake trail.



2) Yellowstone National Park – Wyoming.
http://www.nps.gov/yell/planyourvisit/parkwide-access.htm
Yellowstone offers a variety of accessible features, including accessible lodging (i.e. Grant Village), accessible camping (i.e. Bridge Bay), accessible fishing (Madison River at the Mount Haynes Overlook), and backcountry camping (Ice Lake). The park newspaper, Yellowstone Today, details accessible ranger-led activities. The park also owns two wheelchairs that can be rented by visitors to explore the Upper Geyser Basin area of Old Faithful. For Lodging and Camping, call Xanterra Parks & Resorts at 307-344-7311. For Backcountry camping, call the NPS Backcountry Office at 307-344-2160.



3) Pictured Rocks National Lakeshore– Michigan.
http://www.nps.gov/piro/planyourvisit/accessibility.htm
Pictured Rocks offers both accessible campsites and accessible trails. The trail to Log Slide is gravel, and the trails to Miners Castle and Munising Falls are paved. There is a half-mile accessible boardwalk at the Sand Point Marsh Trail, and the beach at Sand Point has accessible features (paved sidewalks, accessible picnic table, etc.) as well.



4) Everglades National Park – Florida.
http://www.nps.gov/archive/ever/visit/access.htm
All three campgrounds at Everglades have accessible campsites, and Pearl Bay Chickee is an accessible backcountry camping site. The Flamingo Lodge has two accessible rooms, and multiple boat tours from this lodge are accessible. The Shark Valley tram tour is an accessible tram tour. There are also many accessible ranger-led activities as well as trails (wooden boardwalks or paved, i.e., Gumbo-Limbo Trail). You can also call the park at 305-242-7700 for more information.



5) Tallgrass Prairie National Preserve – Kansas.
http://www.nps.gov/tapr/planyourvisit/accessibility.htm
The Bottomland trail at this national preserve is “fully wheelchair accessible with trailhead kiosk, five interpretive waysides, comfort station, picnic area, benches, and two varying length trails of ¾ or ½ mile” (National Park Service). Bus tours, which are accessible, are offered in the summer months (May to October) at 11 a.m., 1 p.m., and 3 p.m. The 1881 limestone ranch house is also partially accessible (the lower level of the house is not accessible).



For more information on the accommodations at these parks and other national parks, check out the U.S. National Park Service website!
http://www.nps.gov/

Most Accessible Theme Parks

(Universal Studios in Orlando, FL in not mentioned here, but I found it to be even more accommodating than DisneyWorld)


Theme Parks provide fun in the sun for thousands of people during the hot summer months. They are great family friendly places that entertain parents and children alike. There are parks located near most every major city in the United States. Some of the most popular destinations are Cedar Point, Magic Kingdom, Disney Land and SeaWorld. Although these facilities are well-known for their family entertainment, they are also making strides to become the leading accessible theme parks in the country.



Cedar Point Park – Sandusky, OH

Cedar Point has become one of the most popular theme park destinations in the United States. Cedar Point’s accessibility is noticed as soon as one arrives at the gates. The park utilizes a special drop-off area directly in front of the main entrance for guests with mobility disabilities. Wheelchairs and motorized wheelchairs are available for rent on a first-come first-served basis. Patrons may recharge their wheelchair battery at no cost at the Park Operations office.

Typically, the park employs a no food or beverage policy; however, patrons with special dietary needs can bring in a cooler to accommodate such needs. The restrooms throughout the park grounds meet ADA standards and many feature at least one stall with handrails. Sign language interpretation can be provided with one week advanced notice. Although this service is not available at every attraction, it can be accommodated at a majority of theater shows. If a patron requires an assistive listening device, one can be rented with a refundable $20 deposit. Guests should check with Park Operations for locations that the device can be used.

If a guest uses a prosthetic limb, it must be secured safely for all rides. Due to extremely high speeds and force exerted on the riders, guests on the Maverick and Top Thrill Dragster must prove that the “prosthetic device has been designed to remain in place on a high speed roller coaster ride exceeding a maximum speed of 120 MPH (70 MPH for the Maverick) with maximum G forces from -1.5 G’s to 5 Gs with sufficient safety factor for single point failure.”

For clarification or further information, please contact Park Operations at 419-627-2301.



Disney World Magic Kingdom – Orlando, FL

Perhaps the pinnacle of the Disney Empire, Magic Kingdom in Orlando features dozens of rides, shows, games and other attractions for children and adults. The Guidebook for Guests with Disabilities is a great resource. Be sure to pick one up at the Guest Relations area inside the park. It contains detailed information about accessible areas as well as services for guests with disabilities.

In addition to accessible restrooms, Magic Kingdom provides an ample amount of companion restrooms located in many areas of the park. Refer to the Guidebook for Guests with Disabilities for specific locations of these facilities. Guests utilizing wheelchairs, or accompanied by a service animals are permitted to use a alternative entrance to an attraction. Additionally, the backstage area of an attraction can be used as a service animal relief area, provided that the owner cleans up after the animal. There are some areas that have limited accessibility including some restaurants. Ensure accessibility by consulting the Guidebook for Guests with Disabilities.

More information can be obtained from consulting the Disney World Access Guide or by contacting Guest Information at 407-939-6244.



Disney Land Park – Anaheim, CA

Children first fell in love with the Disney Land Park in California in the 1950’s. The park has come a long way since its inception and continues to make efforts to become more accessible. During your visit, City Hall on Main Street is the best resource for disability access.

Service animals are allowed in all areas of the park with the exception of select rides. Guest Assistance Packages include a pen and paper, and a flashlight can be picked up at no cost from City Hall. Park guides are available in Braille to guests with visual disabilities. A $20 deposit is required to secure the Braille guide and should be returned before leaving the park. Hand-held captioning devices are available for rent with a $100 deposit. Disneyland also offers a high-tech captioning system called Reflective Captioning. This system uses an LED display to project captions onto a panel in front of the user. The system is available in select areas throughout the park. Contact the staff at the desired location to inquire about availability.

For guests with auditory disabilities, assistive listening devices are available for rent from City Hall with a $20 deposit. Sign language teams are available for select attractions at no cost but must be requested one week in advance. There are also cast members trained in ASL available around the park. These cast members will feature an ASL pins on their nametag. Wheelchairs can be rented for $10. ECV (Electric Convenience Vehicles) are secured with a $35 fee. Both options require a $20 refundable deposit.

Please view the Disney Land Guide Book for Guests with Disabilities PDF for more information or contact Disney Resorts at 714-781-4565.



SeaWorld Orlando – Orlando, FL

SeaWorld has been a center for family entertainment for several decades. SeaWorld Orlando is one of the most accessible for all patrons in the country. The park has made sure most of the major areas of the complex are accessible. All restrooms and gift shops are accessible by wheelchair. SeaWorld Orlando offers a Guest Service desk to assist guests with disabilities. Wheelchair or ECV (electric Convenience Vehicles) can be rented from this area, although reservations are recommended. There is a reasonable charge for these services.

For people with hearing disabilities, paper and pens are available at each attraction in order for staff to effectively communicate with patrons. Assistive listening devices are also available at many locations throughout the park. SeaWorld Orlando also makes Guest Assistance Packets available to any guest upon request. The packet contains a pen and paper, flashlight and scripts to selected shows. Sign language teams are available at no cost; one week advance notice is required. In addition to the excellent accommodations for humans, service animals are treated well as well.

The Assistance Animal Kit can be obtained for free from Guest Services. The kit contains an assistance animal bandana, bags to assist in cleaning up after the animal, and water with a small bowl. Although the animal may not be permitted on all attractions, it will be permitted in every area of the park and on certain rides. There are also several accessible animal relief areas provided to take the animal.

For more information, contact Guest Services at 407-363-2400. You may also view the park accessibility guide PDF file here.




SeaWorld San Diego – San Diego, CA

SeaWorld San Diego offers a Guest Relations center with staff members available to answer any questions relating to accessibility. The staff can also help you plan your route around the park, making sure all desired areas are accessible. The Assistance Animal Kit is also available at Guest Relations. You may also pick up a park guide from this location which features a map and list of all accessible areas and amenities.

On the first Saturday of each month, SeaWorld San Diego offers American Sign Language interpretation at select shows and exhibits. The park can also provide ASL interpreters on any date at no cost with 2 weeks advance notice. Additionally, SeaWorld has ensured that all dining facilities are accessible.

SeaWorld San Diego instituted two great programs for guests with disabilities both young and old. Special private tours for guests can be arranged as long as they are requested at least 2 weeks in advance. Tour leaders have intensive training in assisting guests with both physical and developmental disabilities. Additionally, the Safe Return Program was incorporated to safely reunite lost guests with the rest of their group. See the Guest Relations desk for more information on this program.

More information can be obtained by calling the park at 1-800-257-4268 or you can also email Guest Relations at SWC.GuestRelations@SeaWorld.com.



All of these parks have taken steps to ensure that all guests can enjoy their visit. These facilities have demonstrated the desire to go above and beyond ADA compliance. By guaranteeing equal access to their respective properties, these popular vacation spots secure their spots at the top of the theme park world as well as the accessibility chain.

The Sunshine Foundation

Dream are granted by "The Sunshine Foundation Dream Village" for children that are terminally ill, chronically ill and abused, ages 3 to 18 years. The Village is located in Davenport on 22 acres. The Dream Village is looking for corporate sponsors to Adopt a Cottage. This is where the families stay when they come to Florida for a Central Florida Dream. For more information on Adopt a Cottage, or any other programs please either visit us on the web site at www.sunshinefoundation.org or phone us at 863-424-4188.

Sunday, April 13, 2008

Friday, April 11, 2008

The Memory Keepers Daughter Trailer




Description: The birth of a child should be the happiest moment in a couple's life. But when a doctor's wife has twins, one of whom has Down syndrome, this physician makes the difficult decision to send one of his babies away. An attending nurse discovers his plan and intervenes, putting into motion events that will haunt the doc, his wife and his son for the next 20 years. This all-star movie features Dermot Mulroney ("The Wedding Date"), Gretchen Mol ("3:10 to Yuma") and two-time Oscar nominee Emily Watson ("Angela's Ashes"). Based on The New York Times best-selling novel, Memory Keeper's Daughter by Kim Edwards.

Wednesday, April 9, 2008

Piece by Peace

Press Release

Peace by Piece Learning Center are bringing children of all abilities together to learn, grow, understand and appreciate one another's differences during our summer inclusion program.

Peace by Piece Learning Center will be holding a summer program for special needs children ages 2-12, who experience difficulties with language, behavior, and/or social skills. The goal of this program is to support the children with not only academic, language and behavior issues but also to provide a summer recreational setting to specifically target their social development with typically developing peers.

Summer School Program Highlights
Children with language delays will receive 1:1 verbal behavior therapy from specialized therapists. Behavior goals will be established and therapists certified in Applied Behavior Analysis (ABA) will provide 1:1 instruction. Academic goals will be targeted and an individualized curriculum will be established by a teacher certified in special education. In addition, children will invigorate their imaginations and showcase their talents through programs such as: art and music therapy; pet therapy, sensory integration, social skills training, peer tutors, occupational therapy and speech therapy.

Recreational Program Highlights
The recreational aspects of this program will be held inclusive with typically developing children. Children will participate in an array of activities such as: Mr. Deke Fitness Class, picnics, costume parties, relay races, arts and crafts, snacks and so much more. The recreational portion of the program will focus on the development of leisure activity skills, social interaction skills and appropriate behavioral choices. The program is designed to provide a safe, fun and self enhancing environment for children, all while making friends and lifelong memories.

In order to provide scholarships and subsidized rates for this program, Peace by Piece is holding a fundraiser on May 17th, 2008. Parents are encouraged to participate. The first annual Peace By Piece Walk and Rock Benefit will be held at Centennial Park, Fort Myers beginning at 10:00 am. Walk Pledge forms are available by contacting Peace by Piece via email tdemarest@peacebypieceinc.com or by calling the school at 239-482-5006.

Parents are encouraged to sign up quickly as spaces are limited. More information and registration materials can be obtained by contacting Peace by Piece Learning Center at 482-5006.

RIP Melissa Ann Riggio


Melissa Ann Riggio
RIGGIO--Melissa Ann, 20-year old beloved daughter of Steve, CEO of Barnes & Noble, Inc., and wife, Laura, died peacefully on April 7, 2008 at University Hospital of Columbia and Cornell in Manhattan, after a courageous battle with leukemia. She was surrounded by her parents, sisters 22-year old Laura and 16-year old Christina, both of Bernardsville, New Jersey, and other members of her loving family. Born March 25, 1988 in Brooklyn, New York, she lived in Bernardsville, New Jersey, since 1999. Melissa, who was born with Down Syndrome, lived a full and extraordinary life. She was a strong and optimistic young woman and was an inspiration to everyone who had the opportunity to know her. In May 2003, Melissa received the Self Advocate Award from The National Down Syndrome Society (NDSS) at their annual spring luncheon in Manhattan, which also honored Senator Hillary Rodham-Clinton. A graduate of Bernards High School, Class of 2007, Melissa was crowned Prom Queen at her senior prom. She was employed by Somerset Hills YMCA in Basking Ridge, where she was an office worker. Melissa had plans to enter a post secondary program so that she could become a counselor at the YMCA. She loved to read and listen to music and she loved to write. A poet and a songwriter, Melissa was taking voice, drama, and dance lessons and aspired to become a singer one day. Some of Melissa's songs were recorded by acclaimed singer/ songwriter Rachel Fuller. Melissa is also survived by her paternal grandmother, Lena Riggio, of Brooklyn, New York and many aunts, uncles and cousins. Viewing at the funeral home is for family only. A Mass of Christian Burial, open to the public, will be offered on Friday, April 11 10am, at Church of St. James, 184 South Finley Avenue, Basking Ridge, New Jersey. In lieu of flowers, the family has asked that donations be made to The Valerie Center at Morristown Memorial Hospital, Morristown Memorial Health Foundation, P.O. Box 1956, Morristown, New Jersey 07962. When making a donation, please indicate that it is in memory of Melissa Riggio. Services provided by Gallaway & Crane Funeral Home: www.gcfuneralhome.com or 908-766-0250.

Published in the New York Times on 4/9/2008.
Guest Book

Tuesday, April 1, 2008

Brittany's Song

http://myspacetv.com/index.cfm?fuseaction=vids.individual&videoid=25857482
Kinda looks like Andrea, doesn't it??