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INFORMATION + INSPIRATION + INCLUSION

AUGUST/SEPTEMBER 2010 FloridaCrossroadsOnline.com

Take control of your child’s education

make sure your kid’s plan adds up

It’s Intensive: TheraSuit Method®

Know The Risks FloridaCrossroadsOnline.com 


Life-enhancing services for special needs clients

At Wells Fargo, we realize that individuals living with disabilities need extraordinary compassion, care and support. Our team of specialists is dedicated exclusively to the administration of Special Needs Trusts, a strategic focus of our business. Working together, we develop a long-term financial plan that can help enrich the lives of individuals living with disabilities and their families by managing care providers, coordinating administrators, and engaging with CPAs and attorneys. If you’d like to learn more about The Private Bank’s Special Needs Trust services, please contact: Lea Ann Collins, CTFA Trust & Fiduciary Specialist (727) 953-1754

Adam Workman Trust & Fiduciary Specialist (561) 362-1055

Wells Fargo Private Bank provides financial services and products through Wells Fargo Bank, N.A. and its various affiliates and subsidiaries. © 2010 Wells Fargo Bank, N.A. All rights reserved.  | AUGUST/SEPTEMBER 2010 Florida crossroads


Aug/Sept 2010 ON THE COVER

COVER STORY Aiden Enright

11 To 3D or Not to 3D? That is the question. Before you grab your glasses, check out these special considerations.

Age: 4

16 A-B-C-D- IEP Review the basics of that powerful tool­­— the Individualized Education Plan. 20 It’s Your Choice When it comes to choosing a school there is no one size fits all. Find out your options. 23 Glutten for Gluten-Free, Casein-Free, Soy-Free We’ve got five recipes you can try out this week that double as dinner and leftovers for lunch.

Photographed by: Mike and Carol Gibson, Versatile Photography

Aiden was born at 39 weeks with complications from laryngeomalcia and stayed in the NICU for four days. He was then sent home with a sleep apnea monitor for 8 months. Aiden was diagnosed with moderate autistic spectrum disorder at the age of two and has been making great strides since. His favorite acitivies are playing outside, swimming, coloring and playing with cars. Nominate your child for Cover Story at FloridaCrossroadsOnline.com/Promotions

© Sean Locke/istockphoto.com

31 How it Works It’s intensive, but the TheraSuit Method is showing some real results to kids with neurological motor impairment.

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Aug/Sept 2010 FROM THE ROAD

5 Editor’s Letter

6 Crossroads Online

6 Happy Faces

MIX ‘N MATCH

31

7 School Days! Want to make the first day special? Here’s your chance.

8 Mixed Bag Asher’s Journal offers online record keeping; Arthur spreads Awareness; celebrate clean hands week.

REAL TALK

Jump on in to Intensive Therapy

Never Miss an Issue! Get all 6 for just $7.50

Use this form to start your subcription. Yes, I want to receive Florida Crossroads Magazine­— filled with parenting tips, resources and moral support for special needs families. Please send me 1 year (6 issues) of Florida Crossroads for $7.50.

PROFILE

13 Step by Step 15 Early Steps offices around the state get you moving in the right direction. 15 Against the Odds Brandon Belzer’s story.

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 | AUGUST/SEPTEMBER 2010 Florida crossroads

9 Meet the Teacher Teachers give their take on preparing for their new class and getting to know the kids.

27 North, South, East and West We’ve got your events covered.

DOWN THE ROAD

33 High School Hero Drew Lorman just graduated from high school, and is ready to start to work.


From the Road

EDITOR’S LETTER

Is Summer Already Over?

I

t is really hard to believe that school will be starting in just a few short Travis and Emily weeks. What happened? Maybe the enjoying the heat has gotten to me, but it seems last days of Summer. like we were just celebrating the end of another school year, and here another one is about to begin. Our summer was full of swimming lessons and a few trips to the beach where Travis and Emily had quite a time. In the past, Travis’ sensory issues kept him from fully enjoying the textures at the beach, but I was proud that this year (after a lot of sensory exercises) he not only walked in the sand but sat down in it, got his hands dirty and had an amazing time. We had a lot of things going on this summer. One of the most fun and exciting was the debut of Florida Crossroads at The Family Cafe conference in Orlando. I was (and still am) overwhelmed by the tremendous response we had from parents, excited for this magazine. I got a lot of hugs when I explained that the reason why we created this publication is to give our special needs community an inspiring resource we can use to connect and share information. I got a few tears when I told everyone that we are committed to putting together a quality, first-class magazine because our kids deserve it. Please tell your friends, your patients, your NEED COPIES FOR support groups, whoever you meet about us. YOUR GROUP? The more people we reach, the closer (and more inclusive) our community becomes. We can provide multiple copies to your group or organization. Send us an email or give us a call at (407) 494-0619 to set up your group subscription. Christy Taylor Christy@FloridaCrossroadsOnline.com

Christy Taylor Editor Mike Ellenburg Managing Editor Alisha Enright Social Media Director Bill Rodriguez Web Master Mission Statement The mission of Florida Crossroads is to provide special needs families with a publication that is informative and inspiring and creates an inclusive environment of support, understanding and acceptance. Presenting life-changing opportunities through informative articles, inspiring stories and illustrative photography and graphic art, Florida Crossroads is committed to helping each family find the right path for their child. For Advertising information: 407.494.0619 advertising@FloridaCrossroadsOnline.com

Florida Crossroads magazine is published bi-monthly by Crossroads Communications, Inc. © 2010. Reproduction or use in whole or in part of the contents of this magazine or of the trademarks of Crossroads Communications without written permission of the Publisher is prohibited. Florida Crossroads magazine makes every effort to ensure the accuracy of content published. Opinions expressed by Florida Crossroads magazine writers are their own and do not necessarily reflect the publisher’s opinion. Neither the publishers nor advertisers will be held responsible for any errors found herein, and the publishers accept no liability for the accuracy of statements made by advertisers in ads. Crossroads Communications, Inc. reserves the right to edit and/or reject any advertising. Crossroads Communications, Inc. is not responsible for the validity of any claims made by its advertisers.

CROSSROADS CONTRIBUTORS Heather Falero (Meet the Teacher p. 9) is a graduate from Florida International University and is certified to teach Elementary Education (K-6), ESOL Students, and Exceptional Student Education K-12. She has earned the title of Highly-Qualified Teacher in Reading and ESOL. Heather teaches at The Palm Beach School for Autism. Leigh Wallace (Meet the Teacher, p. 9) graduated from Auburn University and worked for 12 years in an outpatient mental health center in Collins, Mississippi. She holds certification in Elementary Education (K-6) and Exceptional Student Education K-12 and has worked as a teacher for three years at The Palm Beach School for Autism.

7025 CR 46A, Suite 1071, #521 Lake Mary, FL 32746-4753 FloridaCrossroadsOnline.com

Holly Bortfeld (Glutten for GFCFSF, p. 23) is a Mentor Mom and Parent Support Manager at Talk About Curing Autism (TACA). She has developed the GFCFSF recipe database at talkaboutcuringautism.org.

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From the Road

CROSSROADS ONLINE

reader poll What’s Your Choice?

61% PRIVATE SCHOOL 32% PUBLIC SCHOOL 7% HOMESCHOOL Join in the fun and take our reader poll at FloridaCrossroadsOnline.com

August Marcello Navarro Jonathan Smith Ashyton Chance Stone We hope you have a happy birthday! Sign up for our Birthday Club today at FloridaCrossroadsOnline.com

Check out the smiles on these little cuties.

Aubrey, 13 years Kevin, 9 years Mariah, 4 months Titusville, FL Port Orange, FL Gainesville, FL Show us your stuff. Go to Happy Faces @ FloridaCrossroadsOnline.com

Let us know what you think. Send us your feedback and share your story ideas at FloridaCrossroadsOnline.com

 | AUGUST/SEPTEMBER 2010 Florida crossroads

School girls: © Ron Chapple Studios/Dreamstime, Opposite Page: © Mike Gibson/Versatile Photography

happy faces


TRENDS + TIPS + TOOLS

SCHOOL DAYS! Ready or not, here it comes. Make the first day back something special THE RIGHT TOOLS with these fun and functional ideas.

You can’t take a trip to the beach without building a sandcastle. Sculpt like a pro by using a popsicle stick CHEESE to smoothly shapeSAY large areas and carve out turrets first day school picfor is amore classic. Spicedetailed it andThe towers and of a toothpick precise, up a bit by making a simple sign that announces decorations. Adorn withsea shells and it’s fit for a king. it’s the first day in First grade, or cut out an oversized number to hold. THE RIGHT TOOLS BRING ONthe BREAKFAST You can’t take a trip to beach without building a Start off the day with sandcastle. Sculpt like a pro abyspecial using meal. a popsicle stick Break the rules and let your child pick,out or turrets to smoothly shape large areas and carve a special dish you love. andprepare towers and a toothpick forknow morethey’ll precise, detailed decorations. Adorn withsea shells and it’s fit for a king. CLASS SCHEDULE Need a way to reinforce the new routine? Check RIGHT out the OnTaskTHE OnTime forTOOLS Kids illustrated task andcan’t timetake management system. a routine You a trip to the beach Create without building a disk specific to your child and set the timer. Thestick sandcastle. Sculpt like a pro by using a popsicle visual reinforcement will help show your child to smoothly shape large areas and carve out turrets what theyand are doing now, what’s next and what and towers a toothpick for more precise, detailed has already beenwithsea done. (timelymatters.com) decorations. Adorn shells and it’s fit for a king. ROLE CALL Practice first day of school scenarios ahead of time to build confidence and calm fears. Role play how to make new friends, saying hello to the teacher and sharing some of those fun memories of the summer.

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Mix & Match

Arthur Spreads Awareness

Tim and Nicole Clark began their journey in the autism world when their oldest son, Asher was diagnosed at age 2. They started immediate intervention with diet, medication and traditional therapies and soon saw some improvements in Asher’s symptoms. Asher’s dad, Tim, created an online application that allowed he and wife, Nicole, to keep track of Asher’s daily activities and overall treatment goals. Now other families can use this web-based record keeper and allow family members, teachers, therapists, and doctors to connect and collaborate for the common goal of the patient’s health. Check it out at AshersJournal.com

MY FRIEND ISABELLE By Eliza Woloson Isabelle has Down syndrome, but that doesn’t matter to her friend Charlie. ($14.95) DON’T CALL ME SPECIAL By Pat Thomas Explores questions about physical disabilities in a simple and reassuring way ($7.99)

SPECIAL PEOPLE, SPECIAL WAYS By Arlene Maguire Shares the message that even though we are different, we are the same. ($14.95) NATHAN’S WISH: A STORY ABOUT CEREBRAL PALSY By Laurie Lears Nathan, who struggles with CP, finds ways to help others, even with his disability. ($16.99)

Keep ‘Em Clean! International Clean Hands Week is Sept. 19-25. Celebrate with these handy links: CleanHandsCoalition.com Brush up on the facts, get some fun ideas and print a proclamation to promote clean hands. ScrubClub.com Play online games, watch webisodes and print out coloring pages and activity sheets for all things related to handwashing. HenryTheHand.com Sread the word, not the germs! Get the tools to bring a hand awareness campaign to your school or group. While you’re there, don’t forget to take the sniff test!

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Arthur: © 2010 WGBH/Cookie Jar Entertaiment Inc., Clean Hands: © Pavel Losevsky/Dreamstime, Opposite Page: © Yuri Arcurs/Dreamstime

KEEPING TRACK OF MEDICAL INFORMATION

The PBS Kids Go! Series, Arthur, is helping to teach kids about Asperger’s syndrome. “When Carl Met George” is the first of a series of five shows exploring the topic of friendship. George is excited about spending time with his new friend, Carl, who loves to draw trains and knows all kinds of cool facts about them. George discovers that Carl has Asperger’s syndrome and sees the world a little differently than many kids. Despite their WHEN CARL MET GEORGE: pbskids.com differences, George and Carl become great pals and learn a lot from each other. Check out these other resources to help spread disability awareness:


EDUCATION + ADVOCACY + ISSUES

Meet the teacher A new school year usually means a new teacher. What’s the best way to get to know each other? Hear it straight from the source. BY H eather Falero & L eigh Wallace

B

enjamin Franklin once said, “Tell me and I forget. Teach me and I remember. Involve me and I learn.” As mothers of young children and teachers of elementary students with special needs, all varying within the Autism Spectrum Disorder (ASD), the role of “educator” is a position we hold with the utmost respect, passion, and diligence for success. Knowing the high expectations of the families, the community and ourselves, we face the new school year with an excitement comparable to that of a child’s first visit to Disney World. Our hopes and expectations for a year of personal triumphs and academic successes from our students are worn on our sleeves, along with our hearts. This is not a job to be taken, unless it is felt in your heart. We strive to provide our classes with new experiences and challenges that will foster growth socially and academically. Research provides pros and cons to the “self-contained” classroom, but we know as teachers in such an environment that our students are there to receive the same experience that we expect our own children to receive in their general education classrooms--a safe, caring, learning environment with high expectations for performance. Our classroom family is like any other regular classroom family, just smaller. Our students vary in personality and are all 100% individuals. We have students that are comfortable with the “lead”, eager to volunteer to come forward or answer a question with visual support or an alternative communication device. There is often at least one “jokester”, who answers the question wrong and giggles because he really knows the answer or the “entertainer” that flourishes when the puppets are out and vocalizes and claps to the beat of the song. Yet, there is no “cookie cutter” special needs student. Each one comes to us with his or her own personality and needs to be developed. Recognizing this, the first several weeks of school are crucial to building the supportive learning environment.

FloridaCrossroadsOnline.com 


Before the first day of school, teachers are busy getting the class list, reading IEPs, making plans to differentiate instruction to meet the objectives of each IEP goal while also, decorating the classroom to be fun and welcoming. We are familiarizing ourselves with any information pertaining to any new faces joining our classroom family that year so that we are prepared to welcome them warmly, in an organized, structured way. In the first days of school, and the first weeks to follow, we continuously reinforce the classroom rules, expectations, and daily schedule. Research has proven that “a sturdy, structured environment” goes hand-in-hand with academic success, especially when working with special needs elementary-aged school children. It is also vitally important, especially working with students with ASD, to build a familiarity and relationship with the parents of our students.

Learning needs to be reinforced and continued after school hours for optimum success and growth to occur. As educators and mothers ourselves, we value the input of our student’s parents. It is often through their experience and personal knowledge of their children that we are able to quickly learn about the different interests or quirks of our individual students, especially those with communication deficits or students who are completely non-verbal. Learning personal, individualized information about our students can help us better plan our instruction and methods for teaching them. Knowing this information lets us foster their interests and incorporate it into the curriculum making the learning process that much more exciting. This parental involvement is welcomed and encouraged throughout the school year, and throughout the growth and changes of our students. The parent- teacher relationship is crucial to building stronger skills that have just been learned, whether it is at school or at home. Ongoing communication between teacher and parents through go home folders, quick phone calls, parent-teacher conferences, Individual Education Plan (IEP) meetings are vital means of delivering suggestions and concerns. As teachers, we find the most academic growth in students come from those who have parents following through with suggestions and homework. Parents from time to time express frustration with the difficulty they face with a strong-willed child having difficulty sitting to do homework or finishing a new task request like sitting one minute on the toilet to start toilet training. As

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teachers, we are available to make suggestions based on the individual child and situation. Have faith that positive changes can occur faster when persistence, consistency and loving support are shown at school and home together. Remember, though, Rome was not built in a day. For exceptional education students to thrive, especially those with ASD, routine scheduling at home, just like at school, may be necessary to provide security to the student Knowing what is expected prior to school or following school can make a difference in the “flow” at home. A teacher can assist in developing picture or word schedules for home to help parents and students know what tasks must be done, such as 3:00 pm Go Home, 3:30 pm Outside Time, 4:00 pm Snack, 4:30 pm Homework, 5:00 pm Computer, 5:30 pm Supper, etc. A word of advice: the activity most desired by the student should follow “homework”. As mothers, we insist that dessert is eaten only after dinner is finished; it is the same idea. Motivation to get the toy, book, or the computer may be the key to reinforcing homework completion. Teachers can be available to brainstorm ideas to improve scheduling problems at home. Thinking of the parent-teacher relationship as a team working toward the same goal helps keep it in perspective. Overall, being a teacher of special-needs students is challenging, rewarding beyond words, and a title that we wear with pride. We love our students for who they are, and like we feel about our own children, we can see their potential and success. All they need is a little guidance and someone to believe in them. That is what being a teacher is all about.

© Poznyakov/Dreamstime, Opposite Page: © Jose Manuel Gelpi Diaz/Dreamstime

Real Talk: EDUCATION


Real Talk: ISSUES

To 3D or Not to 3D? I

Move over HDTV, 3D is on its way. What you need to know about this new technology and how it might affect your special kid. BY CHRIST Y TAYLOR

t started out as a fad but now 3D technology has grown into a fullon phenomenon. Hollywood continues to produce blockbusters like Avatar and Alice in Wonderland. Cable networks like ESPN and Discovery Channel will soon be broadcasting in 3D. Television sets with 3D capabilities are making their way into the market in increasing numbers, giving conventional sets a run for their money. So, 3D may be the latest and greatest, but can it live up to the hype? For those of us who are affected by special needs, maybe not. Not all of our kids will be able to participate in the 3D mania, specifically those with vision impairments, seizure conditions and sensory processing disorders. Here’s a little insight on why: Vision Impairments The most common barrier that will keep people from using 3D technology is vision impairment. Anyone with a condition that causes the eyes not to align properly, such as strabismus, or those who have focus and convergence issues may not be able to see the images clearly. The American Optometric Association estimates anywhere from three to nine million people have an impairment that affects their binocular vision. “Quite simply, people who have even a small vision misalignment or those who don’t have equal vision in both eyes may not be able to see 3D images properly,” Dr. Leonard Press, chair of the AOA’s Pediatrics and Binocular Vision Committee said. To understand why, it may be helpful to offer a simple explanation of how 3D technology works. When making a 3D movie, for example, special cameras are used that capture two images that simulate the different perspectives of the left and right eyes (binocular vision). To view the images, two synchronized projectors project two respective views onto the screen, each with a different polarization (light rays are in different directions). Polarized glasses filter the images so that each eye can see the proper perspective. The brain fuses the two images into one, creating the perception of depth and closeness. Kids who have pronounced conditions like exotropia, esotropia or even nystagmus will more than likely not be able to watch 3D programs clearly. These kids would also have depth-perception issues in their

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Seizures As with many types of electronics and theatrical, motion simulated settings the risk for a photosensitive seizure is present with 3D technology. Dependent on rapid light changes and flickering effects, 3D televisions and movies have the potential to be a photosensitive seizure hazard. Samsung, a leading manufacturer of 3D televisions and glasses, warns viewers with a history of seizure or epilepsy to consult with a doctor before viewing. Generally speaking, however, the risk of seizure from a 3D television does not seem to be more than that of a regular 2D set. To be ultimately sure, contact your doctor and discuss the risks.

3D televisions and movies can be risky for people with vision impairments, seizure disorders and sensory issues.

Disorientation and Sensory Processing Disorders There are a few sensory systems at play with 3D viewing. Obviously the sense of sight and sound are two major components, but a less obvious one is the vestibular system. Located within your inner ear, the vestibular system is responsible for maintaining balance and constantly sends signals to the neural structures that control your eyes, and your muscles. When there is a disconnect between this system and what your eyes think they are seeing, symptoms like nausea, dizziness and general fatigue can occur. Kids with sensory processing disorder may also find it difficult to deal with the over-stimulating input from a 3D experience. A child with autism or other sensory issues may not be able to interpret the

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information coming from the screen correctly, and may feel scared or overly anxious.

S

pecial needs or not, parents are being encouraged by both television manufacturers and healthcare professionals to monitor children closely for adverse symptoms relating to 3D programming. Kids and teenagers tend to be more likely than adults to suffer side effects like altered vision, lightheadedness, dizziness, eye twitching and nausea. Taking breaks from viewing and limiting the amount of time watching in 3D mode is recommended. While it seems the technology is here to stay, families have the final decision on whether 3D has a place in their home. For families with special needs kids, the decision might be best made after consulting with a doctor.

© Philcold/Dreamstime, Opposite Page: © Lev Dolgachov/Dreamstime

daily vision that can impair their coordination and visual judgment. The next tier of people would be those who have slighter alignment issues. These children and adults may not even know they have a problem, until they try to watch something in 3D. “Watching 3D programming can unmask issues such as lazy eye, convergence insufficiency, poor focusing skills and other visual problems consumers might not have previously known existed,” Dr. Dominick Maino, a professor of Pediatrics/Binocular Vision at the Illinois College of Optometry’s Illinois Eye Institute said. Eye-strain and fatigue could be another side-effect from 3D viewing. When the eye is forced to make prolonged adjustments to focus, like they would in a two hour movie, the ocular muscles are constantly working with no rest. For some people, that overuse can result in headaches, blurred vision and dizziness.


AGENCIES + ORGANIZATIONS + INDIVIDUALS

Step By Step Early Steps offer early intervention services to kids and education for families.

T

he natural cycle for all living things is birth, growth, maturity and for human beings those early steps are particularly important. The first five years are the most monumental in a child’s life and have the most impact and potential for future success. Babies are born ready to learn, prepackaged with 100 billion brain cells. After birth, these cells are continually making connections called synapses. The experiences a child has, the stimulus they are surrounded by and the more activities they are exposed to that make them have to think are what drive these connections, which get stronger the more they are used. By age 5, 90% of these connections have already been made. These first years that the brain uses to hard-wire itself are of crucial importance to a child who is at risk for developmental delays. If a child is not advancing in cognitive, communication, motor, self-help or personal-social skills at the same rate as other kids, early intervention services are critically important. Through physical therapy, occupational therapy, speech therapy and related services many children can make great progress and ultimately increase their chances for later learning and success. The Individuals with Disabilities Education Act (IDEA) is a federal entitlement that helps families of children with special needs access help and support. Through Part C of

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PROFILE: EARLY STEPS IDEA, which was first established by Congress in 1986, families have access to early intervention services for infants and toddlers with disabilities, birth to age 3. In Florida this program is called Early Steps. There are 15 Early Steps locations around the state, all prepared to help families who qualify find the help they need. The first step of the process is an evaluation to assess the child’s speech and language skills, physical abilities, hearing and vision, social and self-help skills and other important areas of development. The team takes their observations, standardized testing scores and parent/physician report to determine if the child is eligible for services under Part C. If eligible, the family then works with an Early Steps coordinator to develop an Individualized Family Support Plan (IFSP) which will guide the early intervention process for the child. The IFSP will include parent’s goals for the child and a plan for services that will help facilitate the child’s development. Under Part C, families receive these early intervention services at no cost. Therapists come to the child’s natural environment, such as their home or day care, to work with them one-on-one. Taking a “family-centered” approach, the therapist not only treats the child, but also aims to educate the family on techniques, activities and exercises that can be done at home to reinforce therapy. Early Steps “family-centered” focus also provides opportunities for parent support and education through play groups, seminars and events. Programs offered vary among Early Steps offices, but all are able to provide resources and community contacts to families.

Early Steps Offices To find out more about the Early Steps program in your area, or to schedule a screening, contact the office that services your region.

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BAY AREA (Hillsborough, Polk) Bay Area Early Steps (813) 974-0601

SOUTHERNMOST COAST (South Dade & Monroe) Miami Children’s Hospital (786) 268-2611

BIG BEND (Gadsden, Jefferson, Leon, Liberty, Madison, Taylor & Wakulla) Children’s Home Society (850) 921-0330

SPACE COAST (Brevard) CATCH of Brevard, Inc. (321) 634-3688

CENTRAL FLORIDA (Orange, Osceola & Seminole) Developmental Ctr. for Infants & Children (407) 317-7430 GOLD COAST (Broward) Children’s Diagnostic & Treatment Ctr. (941) 487-5403 GULF CENTRAL (Charlotte, Desoto, Hardee, Highlands, Manatee & Sarasota) Sarasota Memorial Health Care System (941) 487-5403 NORTH BEACHES (Flagler, Lake, Putnam, Sumter & Volusia) Children’s Advocacy Center of Volusia and Flagler Counties, Inc. (386) 258-7434

SOUTHWEST FLORIDA (Collier, Lee, Hendry & Glades) Health Planning Council (239) 433-6700 TREASURE COAST (Palm Beach) Easter Seals of Florida, Inc. (561) 881-2822 WEST CENTRAL (Citrus, Hernando, Pasco & Pinellas) All Children’s Hospital (727) 767-4403 WESTERN PANHANDLE (Escambia, Okaloosa, Santa Rosa & Walton) Sacred Heart Hospital (850) 416-7656

NORTH CENTRAL (Alachua, Columbia, Dixie, Gilchrist, Hamilton, Lafayette, Levy, Marion, Suwannee & Union) EARLY STEPS, Department of Pediatrics COUNTY BY COUNTY: (352) 273-8588 Contact the Early Steps office in your county for NORTH DADE more information or to (North Miami-Dade) schedule an evaluation or (305) 243-5808 screening NORTHEASTERN (Baker, Bradford, Clay, Duval, Nassau & St. Johns) (904) 360-7022


Against the Odds T he list of medical issues on seven-year-old Brandon Belzer’s chart is a long one. Hydrocephalus, optic nerve damage, severe developmental delay, hypotonia and autism are a few of the diagnosis. Brandon had seven surgeries before his fourth birthday and dozens of other tests and procedures, but never any clue as to what caused his multiple disabilities, until recently. Doctors were able to explain to his mom, Kimberly, that a genetic disorder caused by the deletion of a portion of chromosome 2 is the explanation. When Brandon turned three, Kimberly took him to the emergency room fearing a shunt failure. Instead, she was faced with even more heartbreaking news that Brandon had kidney cancer, a condition called Wilms tumor. “On top of that diagnosis we found out that he had something called horseshoe kidneys in which his kidneys were attached in a horseshoe fashion,” Kimberly adds. Brandon started chemo and radiation and had two surgeries to remove the tumor and portion of his kidney with the cancer cells. He successfully completed the treatment three years ago and has been in remission ever since. Not all of his doctors were sure of Brandon’s prognosis, or if he would be able to walk, Kimberly kept a positive attitude and pushed

him to succeed. She was not going to let others influence her dreams for her son. “Brandon showed so much determination and spunk that I just knew that God gave him that fighting spirit for a reason, and he proved me right,” Kimberly said. Her strategy was to surround Brandon with positive people who love and care for him and most importantly, believe in him. She maintained a jam-packed therapy schedule and kept faith that he would prove the naysayers wrong. Six months after his fourth birthday, he did. The little boy, who many doubted would ever walk, took his first steps. “He is doing wonderful now and even tries to run,” Kimberly said.

PROFILE: BRANDON BELZER

Brandon continues to make significant progress in many areas. He can now feed himself with a fork and can match colors and objects. Progress may be slow by some standards, but Kimberly says she sees growth every day. Each milestone he makes is another reminder of how far he has come. “Brandon teaches me something everyday that cannot be taught anywhere else,” Kimberly said. “He teaches me about faith, determination, spirit and selflessness, just to name a few. I am a different person today because of my experience with Brandon and I like the new me much better.” Submit your child for Profile at FloridaCrossroadsOnline.com. Click on “Share Your Story” FloridaCrossroadsOnline.com 15


The Individualized Education Plan (IEP) is an important tool in your arsenal. Make sure you know how to use it. BY PAM L I N D E MA N

T

he individualized education plan or “IEP� is such a powerful document when it is developed, executed and revised correctly. In my opinion, every child, whether they have special needs or not, should have an IEP and they should have access to the rights that come with it. If they did, more children would graduate from our schools with a better education and stronger life skills.

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As a parent of a child with an IEP, you must make it a priority to understand what an IEP is, what your rights are, and if it’s being written and implemented properly. A great IEP must have your involvement. The attention you pay to the process now, will pay off significantly when your child graduates from high school and enters life later on. IEP: Access To All Services The first thing to understand is that once your child is eligible for an IEP, they have access to all the special services, accommodations and modifications provided by the school district, as long as they qualify for them. For example, let’s say a child has ADHD and very mild autism. The parents want the child qualified under Autism Spectrum Disorder (ASD) because they want him in an ASD classroom with ASD services. The school district determined he met the criteria for Other Health Impaired because of the ADHD, but he did not meet the eligibility criteria for ASD. The parents are upset because they don’t think their child can have those ASD services. Not true! Under the Individuals with Disabilities Education Act (IDEA), no child can be excluded from services because of their eligibility category. If it can be demonstrated that the child would benefit from specific types of services (in this case, the ASD classroom), and the IEP team agrees, then the child can receive those services. IEP: More Than Academics When your child qualifies for an IEP, the school district must address how your child performs academically, but they must

consider other areas as well. If your child demonstrates a need in any of the following areas, appropriate services should be included on the IEP: Curriculum and Learning Environment – addresses a student’s needs in the general curriculum or other academic area. Includes skills in task-related behaviors, strategic learning, problem-solving, functional academics, and vocational/ employment skills.

The attention you pay to the process now, will pay off significantly when your child graduates from high school and enters life later on. Social and Emotional Behavior – Focuses on the student’s needs in working in groups and developing interpersonal relationships. Services include behavior management, therapeutic programs, and other support services. Independent Functioning – Includes the skills and knowledge associated with personal daily living and care (potty training, hygiene, dressing), accessing community resources, and self-management

(planning and goal-setting, organizing). Communication – Addresses the student’s ability to participate effectively in initiating and responding to communication; can include interventions (PEC System) and therapy, individual assistance, and the use of alternative and augmentative communication (special device). Typically there is a separate sheet on the IEP for each of the above areas a child needs services in. For example, there will be a separate sheet for Social and Emotional Behavior which will have its own Present Level of Performance Statement, its own goals (and objectives) and a specific list of services. The Communication area will have a separate sheet and so on. IEP: 3 Main Parts Your child’s IEP should reflect the special services to be provided to your child as recommended by the IEP committee. The three main components of the IEP are: 1. Statement of the student’s present level of educational performance, 2. Measurable annual goals that will allow the student to be successful in an appropriate curriculum. 3. Identification of the special education and other services needed by the student. It’s important to note that prior to the reauthorization of IDEA in 2004, objectives and benchmarks were required for all students. As of

FloridaCrossroadsOnline.com 17


IEP: Special Factors IDEA requires that the IEP team must consider the following special factors for each student and determine if the student has needs that must be addressed on the IEP: 1. Does the student exhibit behaviors that impede his or her learning or that of others? 2. Is this a student with limited English proficiency? 3. If the student is blind or visually impaired, is instruction in Braille and the use of Braille appropriate for the student? 4. What are the communication needs of the student? 5. Does the student require assistive technology devices and services? 6. Does the student require specially designed or adaptive physical education? 7. Does the student qualify for Extended School Year Services? There is so much information about IEPs accessible through the internet. The Bureau of Exceptional Education and Student Services of the Florida Department of Education, exists to assist school districts and parents in the provision of special programs. They produce hundreds of publications about special education in the State of Florida, and it’s all free!

18 | AUGUST/SEPTEMBER 2010 Florida crossroads

Goals to Grow On One of the objectives of the IEP process is to identify those goals and objectives that will allow the student to be successful in an appropriate curriculum. It is not feasible nor expected that a student’s entire educational program be documented on the annual IEP. The Sunshine State Standards, the Sunshine State Standards for Special Diploma, and program and course descriptions have been designed to guide instructional programs for all students, including students with disabilities. Well-written goals are specific and they are measurable. They take into account the abilities of the student and the importance of the goal area to the student at the time. Writing goals is a combination of experience, common sense, team input and professional judgment and there is always more than one way to write a good goal. Here are some examples of well-written goals: Given second grade material, Casey will read a passage orally at 110130 wpm with only random errors. By the end of the school year, Mike will be able to read 4th grade text at a rate of 70-90 wpm with no more than 2 errors. Shelli will count by 2’s up to 50 in 30 seconds or less. Given pictures of clock faces with the hands in any position, Amy will state the correct time in “minutes after the hour,” accurate to the nearest 5 minutes, 9 of 10 trials. Given a three-step direction, Tracy will promptly follow all three steps, in the correct order, 9 out of 10 times. Steven will read all 110 Dolch sight words in one minute with no more than two errors. During free time such as lunch or recess, Kevin will initiate an interaction with at least one other peer and say, “hi” every day. Toni will attend school every day and be on time for all of her classes during the final 9 week grading period. When asked his name, address and telephone number, Jonathan will answer all three correctly every time. Laura will maintain eye contact as long as a person is talking with her. Kelly will count various amounts of money, all less than $1.00, created with quarters, nickels, dimes and pennies.

© Edward Westmacott/Dreamstime

July 1, 2005 short-term objectives or benchmarks are required only on the IEPs of students who are using alternate standards rather than grade level standards.


At Arnold Palmer Hospital for Children, we have a history of providing the families of Central Florida with quality care and superior service. We make sure compassion is part of every healing environment we create. And we are on a constant mission to improve our specialized service offerings. While all of this may make us a great hospital, everything we do, everything we are, everything we have is designed with one purpose in mind—making kids feel better. Our comprehensive services for children and their families:

Arnold Palmer Hospital is the only children’s hospital in Central Florida to rank as one of “America’s Best Children’s Hospitals” in U.S.News & World Report.

Adolescent Medicine Allergy / Asthma Anesthesiology Apnea Program Audiology Behavioral Health Child Life Congenital Heart Institute Craniomaxillofacial Surgery Cystic Fibrosis Dentistry Developmental Pediatrics Dialysis ECMO – Pediatric and Neonatal Emergency Medicine / Trauma Services Endocrinology Gastroenterology General Pediatrics General Surgery Genetics Program Gynecology Hematology Infectious Diseases Medical Imaging Metabolic Medicine Neonatology Nephrology Neurology Neuropsychology Neurosurgery

Nutrition Occupational Therapy Oncology Ophthalmology Oral / Maxillofacial Surgery Orthopedic Surgery Otolaryngology Pathology Patient / Family Education Pediatric Critical Care Pediatric Critical Care Transport Services Pediatric Endoscopy Pediatric Outpatient Surgery Pediatric Special Care Pharmacy Plastic Surgery Pulmonary Medicine Radiology Rehabilitation Program Research Respiratory Care Rheumatology Social Work Spina Bifida Program Spiritual Care Sports Medicine Thoracic Surgery Toxicology Urology Vascular Surgery Volunteer Services

To learn more about our specialty care, visit arnoldpalmerhospital.com, call 321.8HEALTH (321.843.2584) or join us on Facebook at facebook.com/orlandohealth.

10ORA105

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The Florida Department of Education wants to make sure your child learns in an environment made especially for them. Do you know the options?

S

ome parents may be surprised to discover that one size fits all is not the philosophy of the Florida Department of Education. While district-zoned school are the way the majority of Florida’s students are educated they are not the only route, and for special needs kids the choices may be even more accessible. Florida leads the nation in school choice options and believes that school choice is a big factor in helping ensure high academic achievement. Over the past four school years, nearly one-fourth of Florida’s K12 public school students have attended a school other than the one they were zoned for. The fact that there are choices does not mean that one

type of school is necessarily better than another. Instead, it gives parents the opportunity to create an educational environment that is best suited for their child’s skills, abilities and personality. “Supporting school choice options is a valuable way for families and their communities to work together to create the educational setting that best suits the needs of their children. School choice is a key component to any successful education system,” Commissioner of Education, Dr. Eric J. Smith, said. Let’s take a look at some of the options including public schools, private schools and homeschool programs: PUBLIC SCHOOL The Individuals with Disabilities

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Education Act (IDEA) entitles students with special needs to a free and appropriate public education in the least restrictive environment possible. The way a child with special needs is placed in a school environment is slightly different than their non-disabled counterparts. Instead of just registering for school, special kids undergo an evaluation, typically done by a school district’s student study team, who will assess the child through standardized testing, parent report and observation to determine what type of classroom, and school, they think would be best. When the evaluation is complete, you meet with the team to discuss the results, and to find out what placement


they have recommended for your child. If you do not agree with their recommendation, there is recourse. If the team, which includes you as a parent, cannot come to a unanimous decision there are legal actions that can be taken. You may also consider some other public school options that can provide more of a choice. One alternative to a traditional public school is a charter school. Charter schools are independently operated, and while they receive funding from the school district, they are ultimately allowed to choose their own programs and educational approach. Florida is one of the leaders in charter school options; fourth in the nation with 389. Just like their public school counterparts, charter schools are evaluated and assigned a school grade based on the state’s standards. The benefits to a charter school include smaller class size, alternative curriculum and more chances for parental involvement. The first step in selecting a charter school would be to go to the floridaschoolchoice.org website and click on Charter Schools. From here you can review information about the way charter schools operate as well as find a listing, searchable by school district, of the charter schools in your county. You will need to contact the school directly to discuss admission and find out if it is a good fit for your child. PRIVATE SCHOOL AND THE MCKAY SCHOLARSHIP Florida has a unique program that gives kids with disabilities a chance to withdraw from public school and enroll in a private school, at the state’s expense.

The program, called the John M. Mckay Scholarships for Students with Disabilities Program, was first established in 1999 and had only two students apply. Today there are over 20,000 students using the scholarship with the opportunity to select a school with more specific focus to the child’s needs. The 2010 Florida Legislature passed a new law, HB 1505, which amends some of the eligibility requirements for the McKay scholarship. The program is still open to students with disabilities and still requires a current Individualized Education Plan (IEP). A student who wants to use McKay has to have been enrolled previously in a public school before applying for the scholarship. The new law extends that window of public school attendance to any of the five years prior to the 2010-2011 school year. So, if your child was enrolled, counted and reported for the Florida Education Finance Program survey (taken during October and February each year) anytime between July 1, 2005 and June 30, 2010, you may now qualify for the McKay scholarship. The student must also be a firsttime McKay scholarship recipient in the 2011-2012 school year. Applying for McKay scholarship is all done online. The first step is to go to the floridaschoolchoice.org website and submit the “House Bill 1505 Scholarship Application Form.” After applying, you can keep track of the status by clicking on the “Check Application Status” link. After your application has been accepted you will receive a confirmation number. You will need to contact the McKay contact at the school district where you live with this information, and develop a current IEP if you do not already have one.

The private school that you choose can help you complete the McKay scholarship process. You can find a searchable database at floridaschoolchoice.com that sorts private schools county-by-county and identifies which schools accept McKay. Some schools are geared for a certain type of disability, and some are not. You will have to research the school and find out if it is right for your family. Some things to remember about a private school include that private elementary and secondary schools are not licensed, approved, accredited or regulated by the Department of Education and issue independent school diplomas that do not require approval from the state. That being said, most private schools find independent accreditation through the Southern Association of Colleges and Schools (SACS) and other nationally recognized accreditation programs that hold them to a high standard. HOMESCHOOL A very viable option for many families today is homeschooling. A parent who will be teaching home education does not have to be a certified teacher, but does have to follow certain record keeping rules and guidelines. To formalize your home education plans, you must first send a written notice to your district school superintendent’s office within 30 days of beginning your home-education program. The notice must include the names of the children, their birthdates, the address and the parent’s signature. As the student completes assignments, a portfolio must be maintained. The portfolio should include a log of educational activities, writings, worksheets

FloridaCrossroadsOnline.com 21


and other creative materials used by the student. The portfolio must be available for inspection by the district school superintendent with 15-day notice, so it must be kept current. The superintendent does not have to review the portfolio, but it must be available if requested. The portfolio also must be saved for two years. An annual evaluation must be submitted for each child to the superintendent as well, but the parent can decide how the evaluation should take place. It can be an individual certification by a Florida-certified teacher that the parent chooses, a standardized achievement test administered by a certified teacher you choose, a state student assessment test, a psychological evaluation or any other method that you and the superintendent agree upon. There are several resources to find curriculum for a home school program. Many private schools offer a home education option which will guide the parentteacher through a coordinated curriculum and offer support for record-keeping, annual evaluations and even opportunities for social interaction with group outings and field trips. There are also several private companies that sell home school curriculum and materials. One other choice is to enroll in the Florida Virtual

School, a tuition-free program that serves kids from kindergarten through grade 12. Florida Virtual School offers an accredited, full-time program through many Florida public school districts, and is a home education option for grades 6-12. The program offers individual instruction through online courses facilitated by Floridacertified teachers, textbooks, lesson plans and other curriculum materials, interactive study-aids and field trips, student activities and events. Just because you decide to homeschool does not mean you must give up the services outlined in your child’s IEP. You may choose to have them attend a public school part-time to receive the therapy and services they are entitled to, or you may work out a plan with the school district to bring your child to participate in therapy and support services.

T

he right choice boils down to what fits your child the best. Some parents choose a fully-inclusive public school route. Some choose a specialized private school that focuses on education for specific disabilities. Some decide to keep their children at home. There is no wrong choice, but rather an ideal chance to develop a highly individualized program that is made just for them.

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Looking for some gluten-free, caesin-free soy-free recipes? Try out these five GFCFSF meals this week.

Rice is generally considered a gluten-free grain, but check the label. Make sure to only use “enriched” rice that comes from cornstarch, not wheat.

BY H olly B o r tfel d

G

luten is more than just wheat – it’s grains like wheat, barley, oats and rye. Casein is the protein found in all things dairy – more specifically, anything juiced from a mammal – including cow’s milk, sheep, goat and human breast milk. On a gluten-free, casein-free diet, soy needs to be removed, too. Labels that say “wheat-free” do not necessarily mean gluten-free and certainly not GFCF. Dairy-free isn’t casein-free. Lactose is milk sugar. Lactose-free isn’t casein-free either. Organic doesn’t mean GFCF. Organic milk still comes from a cow and organic wheat is still wheat. Reading labels and understanding the difference is crucial. Gluten-free also includes things that do not have gluten in them but are either grown near them or processed in a facility with them, contaminating them, such as millet and oats. If it sounds confusing, don’t worry. We’ve put together five GFCFSF recipes, one for each night this week, that pass the taste test. You’ll find It is possible to have a tasty meal on this specialized diet. All it takes is a little creativity, some planning and a few tips. Get your shopping list ready; here we go. Special thanks to Holly Bortfeld, Mentor Mom and Parent Support Manager at TACA (Talk About Curing Autism); talkaboutcuringautism.org FloridaCrossroadsOnline.com 23


Coconut-Milk Curry Chicken 4 tsp. curry powder 3 cloves crushed garlic Salt and pepper 3 Tbsp. canola oil ¼ cup chopped cilantro leaves 1 Tbsp. honey 2 lb. chicken tenders 4 cups chicken stock 1 can (15 oz) coconut milk 1 Mix curry, oil, garlic, salt, pepper, oil and cilantro together in a bowl. Add chicken and coat evenly. 2 Cover and refrigerate 2-24 hours. 3 Cook on medium heat until almost done through, add coconut milk, cover and reduce heat to simmer for 15 minutes. Serve over steamed rice. (Pictured on page 21.)

BOX IT UP! The best, cheapest and easiest lunchbox meals are leftovers. During the school week, make one more serving of every dinner and set it aside for lunch the next day. Easy peasy!

Meat Fingers 2 cups seasoned bread crumbs (see variation below) 1 lb. pork, chicken or turkey cut into strips ¾ cup pear juice 2 Tbsp. olive oil 1 Bread crumbs: use 1¼ cup of GF flour, ½ tsp. sea salt, 2 tsp. garlic powder, 1 tsp. parsley, ½ tsp. pepper. 2 Dredge meat in crumb coating.

Dip in juice. Dredge even more in crumb coating. 3 Place on greased pan and brush with olive oil. 3 Cook 350° F. for 15 minutes. Turn meat over, brush bottom side with olive oil and cook another 15 minutes.

Potato Logs 4 white potatoes (cooked and grated) 2 yellow crooked squash (grated) ¼ cup CF margarine Sea salt and pepper to taste 1 Cook potatoes, grate. Grate squash. 24 | AUGUST/SEPTEMBER 2010 Florida crossroads

2 Combine melted ghee or margarine, salt and pepper into bowl. Mix well with hands. 3 Form little logs or tots (no longer than the size of your palm) and place on ungreased cookie sheet. 4 Bake 425 degrees for 25 minutes or until golden brown.


Spaghetti and Meatballs 1 lb ground turkey, beef, pork or veal 2 tsp. salt Pepper to taste 2 cloves crushed garlic ¾ GFCF breadcrumbs soaked in CF milk substitute 2 eggs Italian spices Mix all together with hands. (Don’t over mix, can toughen the meatballs) Form small balls and drop into sauce. Cover and simmer. Let cook through, stirring occasionally (approx. 1 hour). Serve over your favorite GF pasta.

Spaghetti Sauce 1 can crushed tomatoes 1 can tomato paste 2 cloves of crushed garlic Shredded carrots Shredded zucchini Shredded mushrooms Minced onion 3 Tbs. olive oil Salt and pepper to taste Sauté veggies in oil with salt and pepper until tender. (Add oregano and other Italian spices if your child will tolerate). Add crushed tomatoes and paste. Add crushed garlic. Let simmer while you make meatballs. KEEP IT WARM Invest in a good stainless steel thermos. They last forever and keep hot foods hot and cold foods cold all day!

FloridaCrossroadsOnline.com 25


Honey Mustard Chicken Kabobs 6 Tbs. honey ¼ cup dijon mustard 3 Tbs. lemon juice 1 Tbs. chopped fresh thyme Salt and freshly ground black pepper to taste Oil cooking spray 1 large green bell pepper, cut into 12 chunks (about 1½-inches each) 1 large red bell pepper, cut into 12 chunks (about 1½-inches each) 3 large Portobello mushrooms, trimmed and quartered 6 12-inch skewers 2 to 2¼ lbs boneless, skinless chicken, cut into 30 chunks (about 1½-inches each)

STICK IT TO ‘EM Kids will eat nearly anything on when it’s on a stick. Repackage these kabobs on a toothpick and send it for lunch.

1 Combine the honey, mustard, lemon juice, and thyme in a shallow glass or ceramic bowl. Season with salt and pepper, stirring well. Add the chicken, tossing to coat. Cover and refrigerate for at least 3 hours and as long as 6 hours. 2 Prepare a charcoal or gas grill. Lightly spray the grill rack with oil cooking spray. The coals should be moderately hot to hot. 3 Lift the chicken from the marinade. Thread the chicken, peppers, and mushrooms on skewers, beginning and ending with peppers. Drizzle a little of the remaining marinade over the skewers. Grill, covered, for 10 to 12 minutes, turning often, until the chicken is cooked through, the peppers are charred, and the mushrooms are tender. Serve immediately. Makes 12.

Check out the Crossroads Community at FloridaCrossroadsOnline.com for more glutenfree, casein-free, soy-free recipies and discussion about the diet. 26 | AUGUST/SEPTEMBER 2010 Florida crossroads


What’s Up? SportsaBility

NORTH FLORIDA

nORTH September 2010 florida fights fasd summit September 9, 2010 Tallahassee Fetal Alcohol Spectrum Disorders (FASD) describes the range of effects that can be caused by drinking alcohol during pregnancy. Come to Tallahassee on Sept. 9 and join the fight against this growing, preventable disorder. Contact jgurtis@RBOA.com for more information.

Florida Disabled Outdoors Association’s Free Event for persons of all abilities, promoting active living October 1-2 • Ocala, FL SportsAbility is a free event for people of all abilities, their families and friends. SportsAbility is about enhancing the lives of people with disabilities by promoting active living. It begins with a Resource Expo and hands-on indoor recreation and active leisure opportunities for the participants such as disc golf, fishing simulator, laser target shooting, therapeutic activities, arts and crafts, adaptive aquatic demonstrations, therapeutic horseback riding, and much more. Participants learn about the health, wellness, and vocational benefits of recreation. Friday’s events take place from 10 a.m. – 3 p.m. at the Ed Croskey Center, Hampton Aquatic Center, MLK Recreation Complex, 1510 NW 4th Street, Ocala. Saturday is “Outdoors Day” featuring opportunities for participants to try sit water skiing, pontoon boat rides, kayaking, nature trail rides, archery, hand-pedaled biking, music, and much more. The activities on Saturday will be held at the Carney Island Recreation & Conservation Area at 13275 SE 115th Avenue, Ocklawaha from 10 a.m. – 3 p.m. For more information, go to www.fdoa.org or call (850) 201-2944.

What’s Up In Your Area? Send your upcoming events, support group meetings, and other happenings to editorial@FloridaCrossroadsOnline!

Shooting Starz September 10, 2010 St Augustine Brought to you by the St. Johns County Parks & Recreation Department, Shooting Starz meets the 2nd Friday of every month from 6:30 - 8pm. Children are supervised by trained counselors while parents enjoy a potluck and guest speaker. Shooting Starz is now open to all children with disablities through middle school age. Please contact Youth Programs Coordinator Jamie Baccari at 904-209-0377. Fall Walk for Bleeding Disorders September 25, 2010 Jacksonville The Hemophilia Foundation of Greater Florida (HFGF) is hosting the second annual Fall Walk for Bleeding Disorders. Registration will be conducted at the Howard Administration building beginning at 9:00 am the walk begins at 10:00 am. For more information please call 800-293-6527 or register online at www.hemophiliaflorida.org

FloridaCrossroadsOnline.com 27


What’s Up? Buddy walk

SOUTH FLORIDA

SOUTH September 2010 UCP OF MIAMI SHARE & CARE FUNDRAISING LUNCHEON September 21, 2010 Miami This event is at the Hyatt Regency Miami and begins at noon. For more information, please contact Grace Bracamonte Morris at 305.325.9093

The Buddy Walk was established by the National Down Syndrome Society in 1995 to celebrate Down Syndrome Awareness Month in October. It is a walk that anyone can participate in without special training. The Buddy Walk has three primary goals: to promote acceptance and inclusion of people with Down syndrome; to raise funds locally and nationally for education, research and advocacy programs; and to enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice. To start a team of 10 or more individuals who collectively raise pledges in the name of their team or “buddy,” register by Oct. 10, 2010. Contact Christina Schulz, team organizer, at 954.577.4122 for more information. Register online for the Buddy Walk at firstgiving.com/bgcds by Oct. 19 and register for the 5K Run at accuchiptiming.com by Oct. 23.

Attention Therapy Clinics, Schools, Medical Professionals, Organizations and more: You can advertise in Florida Crossroads magazine, and target your area. Get an affordable rate for a 10,000 printed distribution as well as unlimited exposure online. Call us about free design and layout!

TO ADVERTISE: (407) 494-0619

28 | AUGUST/SEPTEMBER 2010 Florida crossroads

If you didn’t get a bumper sticker at the Family Cafe, here’s your chance—just $1.00 per sticker (+ .50 shipping). Go to FloridaCrossroadsOnline.com to order yours today.

©Tomasz Markowski/Dreamstime, Opposite Page:© Silvia Antunes/Dreamstime

broward gold coast down syndrome organization hosts 2010 buddy walk & 5k run October 24 • Hollywood, FL

UCP OF BOWARD SHARE & CARE FUNDRAISING LUNCHEON September 23, 2010 Event at the Signature Grand. Contact Kim Kohl at (954) 315-4057 for more information.


CENTRAL FLORIDA

STEP UP FOR DOWNS

central August 2010 Freedom Ride’s 10th Annual Arabian Nights Fundraiser August 15, 2010 Guests will be dazzled with a preshow demonstration by Freedom Ride’s own riders and horses, experience the amazing Arabian Nights show and enjoy a great meal­—all for the discounted price of $25.00/person (children 3 and under FREE). ALL proceeds benefit Freedom Ride. Doors open at 4pm, show is 5-7:30pm. FreedomRide.com

DOWN SYNDROME ASSOCIATION OF CENTRAL FLORIDA PROMOTES AWARENESS AND INCLUSION WITHIN THE COMMUNITY October 16 • Orlando, FL Come rain or shine, the Step Up for Down Syndrome Walk will be held at Lake Eola Park, downtown Orlando, from 8 am-Noon on Saturday, October 16, 2010, and includes free food, entertainment, local celebrities, games and activities in addition to the 1-mile walk around the park. Registration for families or teams is $25 and additional donations are encouraged. The purpose of the event is to promote awareness and the inclusion of people with Down syndrome in our communities, in addition to raising funds to support the programs of the local Down Syndrome Association of Central Florida which supports families in a 7-county area: Orange, Seminole, Osceola, Lake, Volusia, Brevard, and Polk. For more information or to volunteer, contact the Down Syndrome Association of Central Florida at 407-478-5621.

Connecting Families through family entertainment 12720 S. Orange Blossom Tr., Ste. 8 Orlando, FL 32837 407.855.5128 • puzzlesinc.net

I am fearfully and wonderfully made; Your works are wonderful, I know that full well. Psalm 139:14

First Baptist Church of Oviedo We have classes for preschoolers, children and teens and adults. 407.365.3484 x 148 www.FBCOviedo.org

Bowling for Mito August 29, 2010 Please Join us for the Second Annual Bowling for Mito on Sunday, August 29, 2010 at Colonial Lanes (coloniallanes.net/). All proceeds go to the United Mitochondrial Disease Foundation. $12 for adults, $8 for kids 12 and under. Registration includes 2 games and shoe rental. .umdf.org/flbowlingformito.

September 2010 WINNIE PALMER HOSPITAL NICU 35TH REUNION September 25, 2010 Winnie Palmer Hospital will host a reunion for all NICU graduates, together with the 12th annual Miracle MilesSM presented by Chick-fil-A®. Miracle Miles includes a 15k race, 5k race, Kids’ Fun Run and Walk-Around-Winnie, a symbolic stroll to show support for tiny babies and their families. orlandohealth.com

FloridaCrossroadsOnline.com 29


What’s Up? SPARC 2010

WEST FLORIDA

WEST August 2010 FND’s 25th Anniversary Day in the Park August 28, 2010 Come join us as we celebrate Family Network on Disabilities’ 25th Anniversary with a fun day at Safety Harbor City Park! We’ll have information for families, kids activities, snacks, games and more! Special appearance by Phinley of the Clearwater Threshers from 11:00amNoon! For more information, please contact Family Network on Disabilities at 800-825-5736 or 727-523-1130 or fnd@fndusa.org

SPARC OFFERS RESOURCES AND MORE FOR SPECIAL NEEDS FAMILIES September 11 • Largo, FL

September 2010

SPARC (STAND Pinellas Accessing Resources Conference) provide parents, teachers, therapists and other professionals with resources that will help their children make achievements in all aspects of life. While it focuses on children with special needs, the resources are valuable to any child. There will be something for everyone, for one day, in one place at Fitzgerald Middle School in Largo. The conference will host 60 different breakout sessions, over 100 exhibitor booths, catered lunch and plenty of door prizes including a Dell Laptop Computer. State, regional and local organizations will be on hand for information and questions. Registration opens at 7am, exhibit area at 8am. Breakout sessions begin at 9am. Preregister before Sept. 1 and attend for $25. After Sept. 1, register for $40. Go online to standadvocates.org to register.

3rd Annual Tangerine Blues Fest September 25, 2010 The 49th Street South Business Association of St. Petersburg will host the 3rd Annual Tangerine Blues Fest on September 25th to benefit All Children’s Hospital. For more information or to learn how to become a sponsor, please contact Rick Smith at 727-409-1269 or go to the events tab at allkids.org DR. DICK GUNDERMANN GOLF CLASSIC September 30, 2010 28th Annual Dr. Dick Gundermann Golf Classic sponsored by Morgan Stanley Smith Barney and hosted by UCP Tampa. Event held a the Plantation Palms Golf Club in LandO-Lakes, FL. Get more information at achievetampabay.org

30 | AUGUST/SEPTEMBER 2010 Florida crossroads


THERAPY + TECHNIQUE

Suit-Up

K

Suit Up!

Intensive Therapy with the TheraSuit Method® Gets Results for Motor Delays

ids with disabilities are of gravity between the feet. As a used to working hard. result, there are positive changes Most have participated in in muscle tone and a more relaxed, therapy programs for so long upright posture. that it becomes a part of their The TheraSuit is also able life. Once, twice even three to provide dynamic correction, times a week they willingly meaning it allows the body to make do their exercises, strength a mistake in the way it is moving training and specialized while at the same time correcting activities to get one step closer the position or movement. Over to independence. the course of an intensive therapy The TheraSuit Method® session the brain will use this takes those weekly therapy corrected information to create a visits and multiplies them. better pattern of movement and Instead of one time a week an increase overall stability and control. intensive therapy session will Paula Keyser, a Largo, FL last for three to four weeks, up to four hours a day. The What It Is: Intensive physical consistency and duration and occupational therapy that alone would be enough to uses the TheraSuit, a specialized see dramatic benefits but suit connected together through when a TheraSuit is used a system of rubber bands. as well, the results can be life-changing. Who It Benefits: cerebral Developed by Richard palsy, developmental delays, and Izabela Koscielny, traumatic brain injury, post physical therapists who stroke, ataxia, athetosis, spasticity have a child with cerebral and hypotonia palsy, the TheraSuit Method’s major goal is to improve and change proprioception (pressure from the joints, ligaments and muscles) reduce affected reflexes, restore proper patterns of movement and load the entire body with weight for strength training. When a patient wears the TheraSuit, elastic bands are placed in a specific and precise way to move the body back over the heels and into a more vertical pattern, also moving the center

mom was very excited to give the TheraSuit Method® a try with her son Jeremy. When Jeremy was born, doctors discovered he had a brain bleed that caused a condition called hydrocephalus and placed a shunt to relieve excess spinal fluid building around his brain. Around the age of two Jeremy was diagnosed with cerebral palsy. He is a right-side hemiplegic and does not consistently use his right hand. As most kids with CP, Jeremy started a physical and occupational therapy routine as a baby that continued into adolescence. “When he turned seven, we

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kind of got to the point where we felt we had plateaued with our private therapies and decided to take a break,” Paula said. Jeremy was attending a regular classroom, and independently mobile but did need some assistance with things like climbing stairs. One day, though, while in the library at school BUNGEE JUMP Jeremy tripped, fell and Jeremy Keyser inside broke his collarbone. The the “spider cage” set-back forced him to take with Rebecca Swick, it easy and put a limit on his physical therapist. his physical activities. He had just been released to return to his normal schedule when another fall, this time at home, Children’s Hospital, near their home, reinjured the same spot. that was offering the TheraSuit The Keyser’s felt Jeremy program. This past June, Jeremy could really benefit from some completed 45 hours of therapy over therapeutic strength-building three weeks and came home with and set up a schedule with his old some really good results. therapists. They also found out “Concentrating on his core about a new program offered at All strength was very important,” Paula said. “By the time he left he was doing forty sit-ups. We saw a big improvement in his overall strength and confidence.” Different exercises with and without the suit helped Jeremy focus on his goals of increased strength and self-help skills. His favorite activity was jumping in the spider cage, where bungee cords are connected to a supporting harness that allows the child to jump and do gravityWELL-SUITED defying work, building leg Jeremy wears muscles and providing that the TheraSuit all important proprioceptive while working on input. balance. At the end of the session, the Keyser’s were given a home program designed specifically for Jeremy that included additional strength-building exercises and techniques. He also maintains his new skills in his

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daily routine and is now able to independently dress and undress himself. One of the barriers to the TheraSuit Method® is the cost. Billed around $100 an hour, depending on the facility, most sessions run an average of $6,600. Some clinics offer scholarship opportunities or assistance in filing for insurance reimbursement, but in most cases the money must be paid by the parents up front. Also, kids with heart conditions, uncontrolled seizure, hip subluxation, hydrocephalus, diabetes, kidney problems and high blood pressure must take precautions when participating in the program. The American Association of Intensive Pediatric Physical Therapy is headquartered in Melbourne, Florida and is a non-profit organization providing information and research on innovative therapy through its website at AAIPPT.org. Suit specifications and details can be found at suittherapy.com, the website for the TheraSuit Center, which is the home clinic of Richard and Izabela Koscielny.


TRANSITIONS + GROWING UP

High School Hero

Drew Lorman celebrates his high school graduation with the Class of ‘10.

Mom and son share lessons they learned from their high school adventure.

T

he audience went wild as Drew Lorman stood in the spotlight. Smartly dressed in a white shirt, tie, black pants and a white golf glove, he smiled as the first few notes of Michael Jackson’s Beat It chimed in the air. The audience reacted with enthusiastic clapping and cheering. Drew, seemingly unphased by the crowd, started singing. The audience clapped to the beat as the high school senior sang and danced across the stage. It was a proud moment for Drew, his parents and everyone seated in the auditorium at Freedom High School. For Drew’s mom, Donna, it was particularly special—the culmination of 14 years of vigilantly advocating for her son’s right to be included with his peers. Drew is autistic. Donna had suspected something was wrong when at 18 months he had no words and seemed to be overly active. She spent years consulting with doctors, specialists and experts who

would always tell her not to worry, or give it some more time. Finally, just months after Drew’s fourth birthday, he was given a diagnosis. “I cried for 24-hours straight,” Donna remembered. “The doctor told me he was never going to talk, never have friends and would need to eventually be institutionalized. After I stopped crying, I got very angry and decided no one was going to tell me what my son was or was not going to do. That day changed my life.” In reality, it changed Drew’s life too. Donna immersed herself in the role of parent advocate and never stopped at the word “no.” She was determined to make sure the world found a place for Drew, whether it wanted to or not. Autism was not as familiar then as it is today and Donna and Drew became two pioneers, blazing a trail towards awareness and acceptance. “We were sitting at that first IEP meeting after receiving the diagnosis of autism when Drew was entering kindergarten. The principal told me, we don’t take those kinds of kids here,” Donna

said. Soon after, she filed due process papers with the school district and after 18 months got the court to agree that Drew should be allowed to attend the school he was zoned for and participate in a general education classroom like everyone else. “Drew was the first child in Orange County with the diagnosis of autism to be alongside his peers in a general education class,” Donna said proudly. Thanks to the precedent, the school system has opened its doors to thousands of special needs kids who followed and allowed them the opportunity to be fully-included. A court mandate was responsible for getting Drew in the classroom, but could not make the kids like him. So, Donna worked with the schools guidance counselors and support staff to provide sensitivity training to his class. On the first day of school, without Drew present, the students were educated about autism and disabilities through a short fingerpuppet skit with the message that all kids are the same, but different. FloridaCrossroadsOnline.com 33


In the days that followed, they came to love Drew for who he was— quirks and all. “It changed the dynamic of the class,” Donna said. “The kids came to realize that’s Drew, that’s our friend.” The Lorman’s made it a point to continue sensitivity training through every grade of Drew’s educational career, even in high school. The puppets were replaced with a power-point presentation and the discussion evolved into a global awareness of the equality of people with disabilities. Drew was never picked on or bullied. Instead, he became one of the most popular

kids in school, even nominated to the homecoming court his junior and senior year. With the help of a one-on-one assistant, Drew kept focused on the goals that were carefully crafted for him in his IEP. His teachers would develop the curriculum to support his goals and his one-on-one would insure they were implemented, always with the goal of helping him become as independent as possible. Committed to seeing her son succeed, Donna cut back to working part-time so she could attend bi-weekly IEP meetings. Not to create new goals but to

discuss with teachers and therapists what progress was being made on the ones that were already set. Knowing some people were turned off by her pushiness, Donna requested the meetings anyways. She knew she had to if she wanted Drew to get the most out of his education. As the official IEP auditor, Donna kept Drew’s teachers and his school accountable to what they were legally required to do. Sometimes there comes a point when creativity outweighs curriculum, too. Donna felt strongly that Drew’s goals should be functional and build true

ethic of when you do your job right, you get paid. It also solidified his understanding of money and how to make wise financial choices. When Drew entered high school, Donna started thinking about the next stage of life and decided he needed an “apartment” at school. After some convincing, she was able to get a classroom set up with a kitchen, living space and bedroom where Drew could concentrate on daily life skills, like cooking and paying rent. During senior year, the focus went to job training. The Lormans looked into a work program through the school and came home with three choices for employment: pulling weeds, rolling silverware or cleaning bathrooms. Donna was appalled at what she called the three F’s (floral, food or filth) and put her problem-solving skills to use. The Lormans, along with a few other families and the Autism Society of Greater Orlando invested in a new business called Puzzles, a family entertainment center in Southwest Orange A BRIGHT FUTURE County. Puzzles was Donna and Drew Lorman created to not only survived high school and provide opportunities independence. In look forward to what for families to interact sixth grade, she and comes next. and play in a safe the school staff set environment, but also up a mail route for him at school, to give individuals with disabilities where every day at the same time ages 18-22 a chance to learn onhe would go to the school office, the-job skills for future employment. pick up the mail out of the teacher’s Drew will start to work as a greeter at boxes and then deliver it to them. Puzzles this fall. At the end of the day, if he had Success begins with an delivered the mail correctly, he opportunity. That’s the Lorman’s was given a “pay check” supplied motto. Whether it is transitioning to by Donna and at the end of the employment or singing in front of a week he could cash his check and packed house, every person deserves go shopping at a little “store” his the chance to shine. Whatever lies mom had created for him at the ahead, Drew is assured his time in the school. The experience taught him spotlight, thanks to his mom, who navigation skills, as well as a work will always be by his side.

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August/September 2010 Florida Crossroads