INFORMATION + INSPIRATION + INCLUSION
DECEMBER 2010/JANUARY 2011 FloridaCrossroadsOnline.com
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BRIGHTSTART PEDIATRICS IS A PPEC (PRESCRIBED PEDIATRIC EXTENDED CARE) A NURSING AND THERAPY CENTER FOR MEDICALLY FRAGILE INFANTS AND CHILDREN. In our uniquely designed centers, care is provided by qualified professionals—pediatric nurses and nursing assistants. BrightStart also provides on-site Physical, Speech, Occupational & Respiratory Therapy. Visit us online at
www.brightstartpeds.com
special care
for special needs
CARING FOR INFANTS AND CHILDREN WITH • Apnea Monitoring • Oxygen • Tube Feedings • Tracheostomy Care • Frequent Medication Administration • Ventilator Management
1133 West Airport Blvd. Sanford, FL 32773 407.321.9570 12377 S. Orange Blossom Trail Orlando, FL 32837 407.857.1212 2 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Dec/Jan ON THE COVER
COVER STORY
12 Make the Most of McKay Know the deadlines and how the application process works for this important scholarship.
Patrick & Christopher O’Neill
20 Organize It! Get control of your biggest messes. Tips for taming paperwork, calendars and more.
Age: 13 months
22 Adventures in Potty Training This is the year to get it done. Ditch the diapers—it’s potty time. 26 Game On! A disability does not have to stop you from playing video games. We’ve got the overview on accessible gaming—the tools and the resources.
Nominate your child for Cover Story at FloridaCrossroadsOnline.com
Patrick and Christopher are fraternal twins born at 27-weeks. They weighed one pound, 12 ounces each. After 89 days in the NICU, Patrick came home and four weeks later Christopher followed. The boys celebrated their first birthday in October and are crawling and walking everywhere. Photographed by: Mike and Carol Gibson, Versatile Photography
© Kim Gunkel/Dreamstime.com
31 Doggone Good Readers Reading Education Assistance Dogs are helping kids find a love for reading.
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Reading Assistance Dogs like to curl up with a good book.
Dec 2010/Jan 2011 FROM THE ROAD
5 Editor’s Letter
6 Crossroads Online
6 Happy Faces
MIX ‘N MATCH
7 Let it Snow Even Florida kids can create a snow day.
8 Mixed Bag
10 Winter Treats Warm up to these yummy snacks.
REAL TALK
11 Tylenol Vs. Motrin The pros, cons and best practices.
Never Miss an Issue! Get all 6 for just $7.50
PROFILE
15 Solving the Puzzle Autism Speaks 17 Do You See What I See? Landon Harrington
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. Name (Please Print) Address City State Zip E-mail
Please make check payable to Crossroads Communications, Inc. and mail with this form to: Crossroads Communications, Inc. • 7025 CR 46A, Ste. 1071, #521 • Lake Mary, FL 32746-4753
To order online, go to the subscribe tab at our website www.FloridaCrossroadsOnline.com
4 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
FUN & GAMES
29 Family Matters Winners of the Crossroads coloring contest.
WHAT’S UP?
33 Upcoming Events
From the Road
EDITOR’S LETTER
We Need You in the New Year
Y
ou may already know the story behind Florida Crossroads magazine. My son Travis is a past preemie who now has cerebral palsy, vision impairment and seizures. The good thing about raising a child with special needs is you learn a lot about your child, about yourself and about life. The bad thing is you run out of time for anything else. When we started publishing Florida Crossroads in June the goal was to share some of those “lessons” with others in an attempt to share knowledge and resources—work smarter, not harder. I think we have done that as I hear stories all the time from people who learned something through one of our articles, or followed-up for more information. The other goal was to make it fun. It has been very important to our goal of inclusion (and inspiration) to provide interesting, entertaining articles in an easy-to-read format that makes it enjoyable to read. We really are trying to strike a balance between informative, newsy articles and light, out-of-the-box ones. You cannot be serious all the time, just as you can’t constantly goof-off either. Where am I going with this? I’d like to generate more feedback from you, our readers, to find out what kinds of things you are interested in, what you like and what you want to learn more about. How can we better meet the needs of the special needs community in Florida? How can we help your family? As we head into 2011, I’d like to kick things off by establishing a reader response group. Anyone who is interested, let me know! I’d like to get input from you on story ideas, people to profile, topics to cover and anything else you think we should do to make this magazine better. Though we’re still mapping it out, I envision some type of forum or online group that can get together and put their best ideas forward. If you would like to be a part of it, please email me or send us a message on our Contact Us page at FloridaCrossroadsOnline.com. You could also “like” us on Facebook or follow us on twitter to share your suggestions. We’re open for comments and look forward to receiving them. In the meantime, have a Merry Christmas and a Happy New Year! Here’s to more exciting events, helpful articles and entertaining stories in 2011. Hope you will join us.
Christy Taylor Christy@FloridaCrossroadsOnline.com
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.
7025 CR 46A, Suite 1071, #521 Lake Mary, FL 32746-4753
Blessings,
Christy Taylor Editor
FloridaCrossroadsOnline.com
Travis and his early Christmas present: Find out more about adaptive cycling in the next Florida Crossroads. FloridaCrossroadsOnline.com 5
From the Road
READER POLL What technology does your family use for fun?
71% COMPUTER 29% GAME CONSOLES
STARTING EARLY Jasmine, 2-and-a-half, and her family love Florida Crossroads and can’t wait to get their hands on the next issue. Thanks to Bright Start Pediatrics for sharing!
CONTEST CONGRATS Congratulations to our winners in the Holiday Toy Guide Giveaway at FloridaCrossroadsOnline.com: Sheryl Bunsen, Ft. Lauderdale Jen Goodwin, Orlando Cyndi Alejo, Miami Lakes Check out the Promotions and Contests tab for more prizes.
December Chloe Bunsen Nyla Dorst Samuel Pinaud Lauren Quayle Mackenzie Tyler January Catherine Wright
HAPPY FACES We had tons of fun at the first ever Northeastern Early Steps Fall Festival in October. Here are a few of the smiles we found:
Sammy, 22 months Matthew, 14 months Aidan, 18 months Fernandina Beach, FL Orange Park, FL Jacksonville, FL Send us your picture: Happy Faces @ FloridaCrossroadsOnline.com
Let us know what you think. Send us your feedback and share your story ideas at FloridaCrossroadsOnline.com
6 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Boys at computer: ©Sonya Etchison/Dreamstime, Opposite Page: ©Mark Coffey/istockphoto.com
CORRECTION! The phone number for the Broward/Gold Coast Early Steps office listed in the Step By Step article in the August/September 2010 issue is incorrect. Please call 965.728.1083 or the ChildFind referral line at 754.321.2204 to access services in this area.
Join in the fun and take our reader poll at FloridaCrossroadsOnline.com
TRENDS + TIPS + TOOLS
LET IT SNOW Sure Florida kids usually do not get to see much of that fluffy white stuff but that does not mean they can’t have some snowy fun. Gather a few supplies, throw on a scarf and improvise your own winter wonderland.
e e e SHAKE UP A SNOWGLOBE Use waterproof expoxy to glue a small figurine to the lid of an empty baby food jar. Sprinkle glitter inside the jar and overfill it with water. Epoxy the outside rim of the lid, screw it on and let it dry. (For extra float, add two drops of glycerin before sealing.)
e e e FAKE IT Open an unused disposable diaper and shake out the sodium polyacrylate crystals from the lining. Slowly add water and mix to the right consistency. To make a bigger batch, grab a bag of sodium polyacrylate from the garden center of a home improvement store.
e e e A SWEET SNOWMAN Secure three large marshmallows in a tall stack with vanilla frosting. Use the frosting to add chocolate chips for eyes and a mouth and an orange tic-tac for the nose. Wrap a skinny sliver of a fruit roll-up around the neck for a scarf. Finish by adding two, toothpick arms.
e e e CAFE AU SNOWFLAKE Fold coffee filters in half, then in thirds. Cut out unqiue patterns for a fun flurry. Coffee filters are sturdier than paper and waste less because of their round shape. Tip: pre-flatten filters with an iron or stick them under a stack of books overnight.
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Mix & Match
Picture Perfect Want to take that Christmas card worthy photo for your family and friends? Crossroads photographer Mike Gibson shares secrets of the pros: • Shoot with the best camera you can get. Read the book, and learn how to use it—at least a little bit. • Try practicing by photographing single people, rather than groups. Managing even small groups increases the difficulty a lot. • Be patient. Realize that it’s not easy, and the way to learn is with practice. • Go online or check out a book to discover what ISO, Shutter Speed, Depth of Field, Resolution, and Filesize are. • Turn the flash off and shoot with natural light (the sun) outdoors or indoors, by a window. • The eyes are the window to the soul. Focus on eyes to truly capture the subject’s story.
The New Year’s table has just as much tradition as any other holiday, and might lead to better health, good fortune and a little luck. Make sure your menu includes some of these lucky foods of the new year: GRAPES It’s a Spanish tradition to consume twelve grapes at midnight—one for each stroke of the clock. Each grape represents a different month, and if you get a sour one, be prepared for a bumpy month. HOPPIN’ JOHN In the South, it’s traditional to eat black-eyed peas or cowpeas in a dish called hoppin’ john. Legend has it that during the Civil War, the town of Vicksburg, Mississippi, ran out of food while under attack. The residents discovered black-eyed peas and from then on was considered the “lucky” food. COOKED GREENS Cooked greens (cabbage, collards, kale, and chard) look like folded money, and have come to symbolize economic fortune. It’s widely believed that the more greens you eat on New Year’s Day, the bigger your fortune that year. 8 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Last Call for 2010’s Heroes There’s still time to nominate someone for the Every Child Makes a Difference award presented by After Hours Pediatric Urgent Care. Nominations must be made by December 17, 2010 to be considered for this year’s contest. Brag on something amazing your kid has done that has benefited others or the community and they could be chosen to attend the special red carpet awards gala held at Disney’s Hollywood Studios in Orlando in mid-January. To nominate, go online to AfterHoursPediatrics.com and click on Every Child Makes A Difference.
Portrait: ©Chris Bernard/istockphoto, Grapes: © Khwi/Dreamstime.com, Peas: ©Redgoldwing/istockphoto, Greens:©Alina555/istockphoto
Eat For Luck this New Year
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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Mix & Match: WINTER TREATS
Craisin Good White Chocolate Popcorn Balls 1 large bag, unbuttered microwave popcorn 1½ cups white chocolate chips ½ cup shelled pistachio nuts ½ cup Craisins or dried, sweetened cranberries 1 Pop popcorn in microwave. Empty into a large bowl and add pistachio nuts and Craisins. Stir together. 2 Melt white chocolate in a microwave-safe bowl by cooking on high for 20 seconds. Stir, then cook 20 more seconds. 3 Pour melted chocolate into the popcorn mixture and stir to coat. 4 Line a muffin pan with festive cups and spoon mixture into each liner. 5 Place in refrigerator and leave to chill for 1 hour.
1-2 tbsp. unsweetened cocoa powder 1 tsp. gluten-free, pure vanilla extract 1 tbsp. agave nectar 1½ cups rice milk 1 Put cocoa powder in the bottom of a microwave-safe mug. Add vanilla and agave nectar. 3 Add milk and stir. 4 Heat in microwave for one minute (or more) until heated. Stir and sprinkle with cinnamon 10 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Send us your gluten-free, kid-friendly or texture-sensitive recipes to editorial@FloridaCrossroadsOnline.com.
Hot Chocolate: ©Inga Nielsen/Dreamstime Opposite Page: ©Brad Calkins/Dreamstime
Gluten-free, Dairy-free, Sugar-free Hot Chocolate
EDUCATION + ADVOCACY + ISSUES
TYLENOL VS. MOTRIN Check out the pros and cons and best practices of the acetaminophen and ibuprofen. BY C H A R L E S A . W E L B O R N , M D, M P H , FA A P, FA C E P M edical D i rector, Af ter Hours Pe d i at r ics Urgen t Care
T
here is often question about whether Tylenol or Motrin is more appropriate for your child. The primary difference is acetaminophen (Tylenol) and ibuprofen (Motrin) use different methods to lower body temperature and alleviate pain. The verdict: both work well. Ibuprofen may be better in reducing high fevers of 104-105 degrees and in treating musculoskeletal pain in some children. A common side effect to consider with ibuprofen is it can occasionally cause stomach irritation. Be sure to speak with your doctor about using ibuprofen if your child has kidney disease, asthma, an ulcer or if your child is dehydrated. Whether you are administering Tylenol or Motrin, it’s best to use according to established guidelines to prevent overdose. In the case your child’s age and weight do not match up with the instructions on the box, you should be advised that weight is the better guide. Some children have difficulty taking oral medicines in general, so it’s useful to know that compounding pharmacists are able to make suppositories for almost any medication. If your child vomits immediately after taking a medicine, and it is obvious that the dose has been lost, then it is safe to re-dose. However, these medications can be absorbed very quickly, so unless the vomiting is immediate, it’s best to wait until the next dose. If you are considering alternating the two medications to manage a high fever, you should know there is little evidence that this method is beneficial. In fact, overdosing errors are common as it’s easy to forget which drug to use at a particular point. If you choose to alternate on the advice of your child’s doctor, the medicine should be taken no more than every four hours to avoid potential overdosing.
If your child’s fever is consistently high, and the fever is not responding to medication, the situation warrants a call to your doctor. But, it’s important to note that a fever is not necessarily a bad thing and not always a cause for worry. Fever is our bodies’ response to infection: some of our immune responses are actually enhanced by a higher body temperature, so fever, by design, is beneficial. Since our body temperature can range from 97 to 100.2 on a normal day, pediatricians only consider a body temperature above 100.5 to be a fever. Also, our body temperature is highest around 5-6 pm. So, if you check your child’s temperature from the time they come home from daycare or school to around suppertime, expect it to be higher than the “normal” 98.6. Regarding thermometers, those that measure temperature from the ear canal or forehead are not particularly accurate, especially at higher temperatures. The best way to measure a temperature is to take it either orally or rectally. Finally, Tylenol and Motrin do not generally interact with prescription medicines, but always be sure to consult your child’s doctor or pharmacist if your child is taking special medications. Got a medical question? Go to floridacrossroadsonline.com and submit your questions for our new “Ask A Doctor” section.
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Real Talk: EDUCATION
Make the Most of McKay The end of semester is an ideal time to start making plans for next school year. If you are planning on using a McKay Scholarship next fall, do you know what you have to do?
T
he McKay Scholarships for Students with Disabilities provide over 20,500 special needs students with financial assistance to attend participating private schools. The scholarships are available to any child with a current IEP, but there are procedures to follow. Take a look at these steps to ensure your scholarship.
Qualification: A child qualifies for the McKay Scholarship if‌ 1. They have attended school for the entire school year. Specifically, they must have attended at least one day during the FTE count in the month of October and February. The FTE count is when the Florida State Department of Education Step 1
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counts the number of children in the public school system. It is usually, but not always, held during the first two weeks of October and the first two weeks of February. In order to be counted, your child must be in school at least one day during this period. 2. Your child has a valid Individualized Education Plan (IEP)
ŠIrma Vader/istockphoto.com
BY PAM L I NDEMANN
Real Talk: EDUCATION at the time you withdraw your child from the public school system and enroll him in a McKay approved private school (or other public school) to participate in the McKay Scholarship program. IMPORTANT: The IEP that is in place at the time you withdraw your child from public school and enroll him in a private school is the IEP that will be used to determine the scholarship funding amount. File Your “Intent” to use McKay online at FloridaSchoolChoice.org 1. Click on “McKay Scholarships.” In the left hand column, under “Links for Parents.” 2. Click on “Apply for a McKay Scholarship.” Follow the instructions. 3. Once you have submitted the completed application, the Florida State Department of Education is Step 2
notified. They contact your school district and the school district has approximately 30 days within which to tell the state your child’s matrix score. The school district must send you a letter informing you of the dollar amount of your child’s McKay Scholarship. 4. After filing intent, you must follow-up with the school choice you have selected. Filing intent does not guarantee the eligibility and enrollment of a student. *Important: To use the McKay Scholarship for school starting in August, you must register your intent to use the McKay before July 3. Enrolling The Child In a Private School that Accepts McKay 1. To utilize the McKay Private School Choice Option, you must select a participating private Step 3
school that will accommodate your student. It is your responsibility to contact the private school with any specific questions regarding tuition, curriculum, procedure, policy, transportation, and regulation. A directory of private schools participating in the McKay Scholarship Program is available by county at FloridaSchoolChoice.org. 2. Upon agreement of enrollment between the parent and private school, it is the private school’s responsibility to register and enroll the student into the system. IMPORTANT: Do NOT withdraw your child from public school until your child is enrolled in the private school first or you will not qualify for the scholarship. Make sure your child is enrolled in the private school and THEN withdraw them from public school.
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Real Talk: EDUCATION
Additional Information to Know: 1. There is no penalty if you go online to register to use McKay and then change your mind and decide to keep your child in public school. 2. There is no penalty if you use the McKay scholarship for a full year, or part of the year, and then decide to put your child back in public school. 3. Special note to parents of children who are in Pre-K and who will be starting kindergarten in the fall: In order to qualify for the full McKay Scholarship funding amount, your child must have what is called a “kindergarten IEP.” This means a new IEP must be written for kindergarten to replace the IEP that provided services while your child was in pre-k. A pre-k IEP does NOT qualify for the full McKay Scholarship amount. 4. You can change private schools from year to year, without penalty, as long as they are McKay approved. IEP’s: PUBLIC OR PRIVATE? Technically, an Individualized Education Plan, also known as an IEP, is a document that is created by the public school system for children who qualify for special education services in public school. Private schools are not mandated by law to have an IEP and they are not required by law to follow the IEP the student had in public school before they came to the private school with the McKay Scholarship. However, many private schools do create an individualized education plan for the student, but it is their choice to do so.
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Decoding the Matrix The Matrix of Services is the document used to determine the cost factor for children in special education who have an IEP and to calculate the extra money a school receives for a child who receives ESE services. Although the exact amount can vary slightly from county to county, a McKay Scholarship can range from about $5,000 to approximately $19,000. There are five domains in the matrix used to group the types of services a child may receive as reflected on the IEP: Curriculum and Learning, Social/ Emotional Behavior, Independent Functioning, Healthcare and Communication. Within each of these domains there are five levels used to describe the nature and intensity of services within each domain. Each of the five levels is assigned a point value. The total number of points, determined by adding together the scores for each domain and applicable special considerations points, results in a rating of a Support Level. The Support Levels are either 251, 252, 253, 254 or 255 and are used to code funding levels associated with each child. A 251 is the lowest funding level and a 255 is the highest. Once the IEP team has written the IEP and the meeting is finished, a Matrix of Services document is completed using information found in the student’s IEP. An individual, or group of individuals from the school who are familiar with the student, scores the matrix. Special services to be provided to the student as documented by the IEP committee should be included in the score. It is important to note that school districts are not required to complete a matrix for all ESE students. They are required to complete a matrix for all ESE students who are at a 254 or 255 level and they are required to complete a matrix for all McKay Scholarship students. If not already prepared in advance, a matrix for a McKay Scholarship student must be completed when the parent goes online to register their intent to use the McKay Scholarship. The school district then has 30 days within which to respond to the parent and to the McKay office in Tallahassee. At that time, if a matrix is not already completed, they must complete a matrix and send the information to the McKay office. Parents can ask the school district for a copy of the full matrix document if they want to know how their child’s IEP was scored.
Opposite Page: ©Stephanie Coffman/Dreamstime
Keep Track of the Deadlines and Know What Percentage of Your Scholarship Will be Paid Throughout the Year There are four times during the school year within which a parent can choose to use McKay and pull their child out of public school and put them into a private school. They are: 1. File by July 3 for September 1 payment, and receive 100% of the scholarship amount for the current school year. 2. File by September 2 for November 1 payment and receive 75% of the scholarship amount for the current school year. 3. File by December 3 for February 1 payment and receive 50% of the scholarship amount for the current school year. 4. File by January 31 for April 1 payment and receive 25% of the scholarship amount for the current school year. Step 4
AGENCIES + ORGANIZATIONS + INDIVIDUALS
Solving the Puzzle
Autism Speaks was created to help people with autism put the pieces together for a better life and brighter future.
T
he number of children diagnosed with autism continues to climb. Right now, the Center for Disease Control says that it affects one in 110 children; one in 70 boys. That is a staggering statistic and a sobering reality for families of children who are on the spectrum. Five years ago Bob and Suzanne Wright founded Autism Speaks, the nation’s largest autism science and advocacy organization, after their grandson was diagnosed. Their goal remains the same today as it did five years ago: raise funds to research the causes, prevention, treatments and a cure for autism; increase awareness of autism spectrum disorders and advocate for the needs of individuals with autism and their families. The national Autism Speaks organization is mobilized by local offices in different states around the country. These offices are run by a small staff and a dedicated groups of volunteers who believe in its core values. Florida is home to three Autism Speaks offices with one in Orlando covering Central Florida, Tampa, Jacksonville and Southwest Florida, one in Deerfield Beach and one in Miami. Each of these offices is tasked with the project of coordinating one or more regional “Walk Now for Autism Speaks” fundraisers every year.
Amy Helgeson is the walk coordinator for the Orlando Autism Speaks office and organizes the walk events for Orlando, Tampa, Southwest Florida and Jacksonville. November closed out the 2010 event calendar that Helgeson organized alongside hundreds of volunteers and community partners, and raised more than a half million dollars. While a portion of that money will go back to the national Autism Speaks program to fund its 2011 initiatives and goals, the rest will stay in Florida to fund grants and research projects all over the state. Nearly ever major university in the state is using Autism Speaks grant money to fund research including the University of Miami, the University of Florida, Florida State University and the University of Central Florida. Some of the research topics include detecting ASD in infants, effects of parent implemented intervention for toddlers with ASD and enhancing social functioning among adolescents with Asperger’s syndrome and high functioning autism. Three family service grants have also been awarded to help Florida families. The Autism Society of the Panhandle in Pensacola’s Kids for Camp Summer Learning Lab, the University of Florida CARD program’s Inclusive Summer Camp for Students with Autism Spectrum Disorders and the Renaissance Learning Center in West Palm Beach Project Lifesaver— Equipment and Supportive Technology.
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PROFILE: AUTISM SPEAKS
Geoffrey Giraffe, the Toys-R-Us mascot makes an appearance at the Jacksonville walk. Toys-R-Us is a national sponsor of Autism Speaks.
Helgeson has a literal army of volunteers who help with the walks. From confirming the location and venue to coordinating the resource fairs, the volunteers are instrumental in the group’s success. “We have great volunteers and great support,” Helgeson said. The success of our walks are really a testament to our families and volunteers and how passionate they are at changing the future for all who struggle with autism spectrum disorders.” One of the biggest victories for Florida’s autism-effected families was the signing of the Autism Insurance Bill in 2008. Through its legislative arm, Autism Votes, Autism Speaks rallied voters and families to call legislators and raise support for this groundbreaking law. Its three major components include Medicaid coverage of applied behavior analysis and other therapies, creation of a workgroup to negotiate a developmental disabilities compact binding health insurers and HMOs to insure people
with autism and developmental disabilities and mandating coverage for individuals with autism by health insurers and HMOs. All insurance companies and HMOs subject to the mandate were required to be in compliance by April 1, 2010. On a national level, Autism Speaks has been very effective at getting autism into the public consciousness and helping others see how ASD affects children, families and communities. Awareness efforts have been given high-profile attention thanks to the recent “Odds” campaign that featured celebrities like singer Toni Braxton and pro golfer Ernie Els. Actress Holly Robinson-Peete has also helped elevate the level of awareness through outreach efforts, including competing to raise money for autism treatment on the Celebrity Apprentice. Families can find vital resources on the Autism Speaks website (www.autismspeaks.org). On the resource page, parents can find a detailed state-by-state guide
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to services, a library of books and DVDs, and opportunities to connect with other families. One of the most recent projects Autism Speaks has completed is an online video glossary that contains hundreds of video clips that show the differences between typical and delayed development in young children and can help parents spot the early red flags for ASD. Parents and community leaders can access any number of tool kits that provide detailed information and guides for dozens of situations. The “100 Day Kit” and the “Asperger Syndrome and High Functioning Autism Tool Kit” were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis. A “Haircutting Training Guide” and a “Dental Tool Kit” were created to address self-help skills that can be hard for some kids. There are even online resources for emergency service professionals that provide training on how to communicate and help people with autism in emergency situations. The symbolic puzzle piece used as a logo by Autism Speaks is so relevant to parenting a child with autism. Parents can feel they are putting the pieces of a treatment solution together, or learning how to solve the issues facing their child. To help, Autism Speaks has tried to give parents enough information, support and resources to feel complete. Find out how you fit in at AutismSpeaks.org or contact your regional office. For Orlando, Jacksonville, Tampa and Southwest Florida that is Amy Helgeson at (407) 478-6330. For South Florida, including Miami, Broward, Palm Beach and the Treasure Coast, contact (800) 610-6227.
PROFILE: LANDON HARRINGTON
Do You See What I See? Landon Harrington is blind, but in the eyes of his family and community he is seen as a true hero.
M
r. Strong sleeps in a sterile white incubator. At first glance of the tiny, frail boy beside the cords and tubes, perhaps you would question the nickname. Eventually, when you hear of Landon Timothy Harrington’s inner strength, you will agree it fits him perfectly. The 14-monthold survived a premature birth, ongoing seizures, destructive brain hemorrhaging and a 56-day stay in the NICU at All Children’s Hospital in St. Petersburg to become an inspiration for his family, and his community. “He was so vulnerable, but at the same time the strongest little person my husband and I have ever met,” mother Michelle Morales explained. That is why we started calling him Mr. Strong, a name that now seems more than fitting for a child who has had to fight nearly every day of his life. “He’s been through more in the 14 months of his life then I have gone through in 28 years of mine,” Morales said. Morales and her husband Timothy Harrington Jr. were first time parents stunned to find out she was in labor two months before her due date. In an instant Morales
went from excited, expectant momto-be to anxious, overwhelmed, scared-to-death mother. It was a transition that happened abruptly and there was no time to prepare for it. Within 30 seconds of his birth, Landon was whisked away and off to the NICU. The road for many preemies is paved with highs and lows that leave parents in a constant state of emotional confusion. Once on her feet she camped out by Landon’s side and prepared for their new, life-changing challenges. Unfamiliar terms like bradycardia, sub-clinical seizures and Periventricular Leukomalacia became part of her daily vocabulary. A book about
parenting premature babies, given to her as a gift, became her trusted guide. The love and encouragement of her family and friends became the anchors she needed to stay grounded and provide support to her son through some really tough times. Nearly two months after their journey began, Landon came home and the family set out on the next leg of their trip. Landon went for check-ups weekly and evaluations designed to pinpoint any early intervention help he would need. The damage to his brain from the hemorrhages and seizures gave Landon a diagnosis of cerebral palsy and right away he started
FloridaCrossroadsOnline.com 17
receiving physical and occupational therapy. Landon currently participates in therapy 5 days a week. When he was diagnosed with homonymous hemianopsia, a neurological problem that results in blindness, Landon started partaking in vision mentoring through Lighthouse of Pinellas. Morales says the support and guidance she receives during Landon’s weekly sessions have been priceless for everyone in their family. “They are two of the most amazing women, who are incredibly dedicated to making Landon be the best he can be” Morales said about Landon’s vision mentors, Cathy France and Trang Nguyen. “Not only are they my son’s therapists, but they have helped me see the world through my son’s eyes.” Looking in to Landon’s sparkling, blue eyes most people are unaware that he is blind. They see a happy, smiling little boy who loves his mom and appears to love life. That is what Tampa Bay Rays shortstop Jason Bartlett saw when he met Landon at an autograph signing one day last summer. Morales is a die-hard Rays fan and has been going to games since the team formed in 1998. She remembers skipping school to go with her father to the very first game the team played. Since then she has been a loyal supporter through
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down years and championship seasons. The Rays are her team, and by legacy, they are Landon’s too. So, when Morales heard Bartlett would be at a local store signing autographs she canceled Landon’s therapy for the day. The pair were the second people in line and more than excited to shake hands and meet Bartlett in person. Though there was no time for chit-chat, Morales gave Bartlett a letter about Landon’s journey and a rubber light blue awareness bracelet that had Landon’s name inscribed on one side and his Mr. Strong nickname on the other. Morales had ordered the bracelets on the internet while Landon was still in the hospital and had been sharing them with friends and family members ever since. That day she shared it with a hero that she had been a fan of for a long time. When she gave Bartlett the bracelet and the letter, she had no idea that he would come to see Landon in that same light—a hero. Bartlett had taken the letter home, read it to his wife and immediately slipped on the bracelet. He said while reading about Landon’s struggles and triumphs, he could not help but think of his own son and the blessing that children are to their parents. Soon after their autograph encounter, Morales was
PROFILE: LANDON HARRINGTON at home watching a Rays game on TV. Landon was dressed in his baseball gear and sporting a GO RAYS! blue Rayhawk to support the team. As is the ritual, Morales Michelle and Landon with had named off the starting Raymond, the line-up to Landon and was Rays’ mascot. getting him hyped up for the game. As she watched the players take the field, she noticed something on Bartlett’s wrist that sent goosebumps over her skin. Bartlett had taken to the field with Landon’s bracelet on his wrist. Michelle could not believe it. She was excited, honored and humbled all at the same time. Landon seemed unaware of the significance and continued to babble and smile. “He didn’t have to wear that bracelet, he chose to wear it,” Morales said, still amazed by the gesture. After she shared her story with The St. Petersburg Times, Morales With all the attention, the learned that Bartlett was genuinely Landon Timothy—Mr. Strong impressed with her family’s story bracelets starting gaining popularity and was wearing Landon’s bracelet around PinellasCounty and people for perspective and motivation. As wanted to know where to get them. she watched on TV and from the stands, she was amazed by Bartlett’s Morales had additional bracelets made and gave them to All commitment to wear Landon’s Children’s Hospital in St. Petersburg, bracelet. After one of the home who is now selling them in the gift games her dad, Dr. Pedro J. Morales shop. She also donated some to happened to pass Bartlett and Lighthouse of Pinellas, where they quickly called his attention to the are featured on the non-profit’s matching bracelet on his own arm. website at lighthouseofpinellas.org. After finding out Dr. Morales was Eventually, Morales would like Landon’s grandfather Bartlett asked to create a Mr. Strong foundation, in about Landon and offered well Landon’s honor, that would provide wishes to the family. support and resources to families Since Bartlett started wearing of premature babies and NICU the bracelet, Morales had the survivors. As Landon’s story is told, opportunity to give one to Rays’ pitcher Matt Garzaas well. Trying to other families have been inspired to share their experiences raising a get autographs at a game, she saw child with special needs. Her advice Garza and gave him a bracelet. He to everyone is always the same; stay accepted it and started wearing it positive. then and there, too.
“Get over the guilt and get over the pain. Overcome that and don’t dwell on it because there is someone else who needs you,” Morales said. Meanwhile, Landon continues to reach new goals and make steady progress. He babbles and coos all day long and is working at sitting up independently. He turned a year old in September and guess who was at his birthday party? Raymond, the Tampa Bay Rays mascot. As each day brings new joy and new experiences, Morales says she tries really hard to takes it in stride and tries not to get to far ahead. Her main focus is on Landon and giving him what he needs to love life. “All those trials and tribulations we have endured are just minor setbacks; stepping stones to greater things to come,” Morales said. “Landon is still perfect, as far as I’m concerned.”
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4 Steps to Managing Paperwork If you feel like your being burried under a neverending pile of papers and receipts it is time to tame it with a few simple tips.
u Create a System.
Find a filing system that works best for your family. Start simple with folders like To Be Paid, To Be Filed, To Do and Trash.
v Code it with Color.
For multiple-kid households, try color-coding to make it easier finding the right file.
w Deal With the Mail.
Don’t leave mail on the counter, take control of it immediately and put it where it goes. Sorting it daily takes less time, in the long-run, then piling it up and getting around to it later.
x Put it Online.
Create a Care Notebook
Children who are in and out of doctor’s offices, seeing multiple specialists and going to a lot of therapies have a lot of paper to keep track of. One way to keep it all in one place is by creating a Care Notebook. Get a large three-ring binder, file separators, and a three-hole punch.
1
2
Divide the binder into sections with the file separators and make sure each is labeled for easy access. Create sections for treatment plans, receipts, medications, insurance claim copies and anything else you deal with on a regular basis.
3
Place a few sheets of blank paper at the front or back of the notebook to write down questions for the doctor or reminders of when to schedule the next appointment.
4
Get rid of the paper once and for all by finding an online filing solution. Scan documents and save them to an external hard drive or find an online file storage service.
Put an All About Me label on the front of the binder for quick-and-easy reference. Includes doctor’s names and phone numbers, school contacts and a list of current medications.
Try these resources for maintaining records: AshersJournal.com—a web-based, record keeping tool designed for special needs families. TheLittleAcorn.net—hard copy journals pre-organized for a variety of diagnosis and disabilities.
Build a Command Center Every major operation has a center of command and your family should be no different. Create a command center somewhere in your home where everyone can go to see what is happening in the family. What to include: Master Calendar - Use a dry-erase wall calendar as central command. Make sure the squares are big enough to handle multiple lines of appointments.
Keep it Colorful - Use that same color-coding system you created in your filing to assign appointments on the calendar and keep a visual track of the schedule.
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Stick it Up - Use a bulletin board to leave notes and messages for each other. Or, try decorating a clipboard for each person’s papers and reminders and hang it nearby.
Box it Out - Put colorcoded boxes for family members near the command center as a quick-sort place for school papers, artwork and lost and found items.
Make A Chore Chart
Here’s a fun way to remind kids of their responsibilities while satisfying their needs for organization and schedules. Design a personalized chore chart and daily schedule. 1. Start with a magnetic board you can hang on the wall. 2. Find a kit to magnetize business cards at the office supply store. Turn old business cards over to their blank side or use blank paper. 3. Let the kids make their own name plate out of one of the cards and place it on the board. Then let them create cards for daily tasks and chores like brushing teeth or setting the table.
4. Create a grid with the child’s name at the top and their list of chores in a column underneath.
Sorting it Out Tackling a room of the house to get organized might seem like a tall task. Before you can get down and dirty, do a quick-sort to get things under control. Write these categories on index cards to get the sorting started:
Keep It
5. Don’t forget about adding medicine schedules or ongoing therapy appointments to the list. 6. Giving a visual representation of all parts of the daily schedule can give some kids the confidence and security of knowing what comes next.
3 Tricks to Tackling Toys When it comes to toys, remember that less is more. Your kids are far more interested in who they are playing with than what they are playing with. Pare down the toys into a manageable group and use the time you would have spent cleaning up to play a game.
u Get it off the floor.
Invest in a nice shelving unit or a wall cubby system that can save space and help the kids see what they have. Make sure you are able to anchor it into the wall for safety.
v Think Small. Large toy boxes and oversized bins are not the ideal storage system for toys. It makes it hard for kids to find the toy easily and it is very easy for things to get lost or broken. Try using smaller cubes or shoeboxes to group similar items. Take it a step further and label each with a photo of the item and its name.
w Be Color Conscious. Use the same color-code
system from your filing and calendar to give each child their own color box or cubby in the playroom for their special toys and favorite playthings.
For things you love, use and want.
Move/
Store
Group belong Items that somew he else or season re a items to stor l e.
Donate
ed items Gently-us hare with you can s others.
Trash/Recycle Throw out things you aren’t using and aren’t usable for someone else.
Don’t Be Afraid To Say Good-Bye Sometimes throwing an
item away is harder than we think. A special toy or outfit makes us pause as we think about our children playing with it or wearing it. The funny thing is, to the kids it doesn’t make much of a difference. Letting go can be difficult, but there are ways to make it easier.
1
Allow one medium-sized box to keep memories for each child. Put whatever you want in the box, but when it gets full be prepared to take something else out.
2
Take a picture, it will last longer...literally! Turn the photo into a scrapbook page or put it in a frame so everytime you see it you can relive the memories.
3
Sometimes you can incorporate old toys and clothing into your home decor. Turn patches of outgrown outfits into a quilt or sew a stuffed animal into a throw pillow.
FloridaCrossroadsOnline.com 21
O
kay, I’ll admit it. I have a five-year-old and a three-year-old who still are not completely potty trained. Not only is it costing me a fortune in diapers and wipes, but it is inconvenient and even a little embarrassing. The good news is, I guess, I am not alone. I have heard from some of you that potty training continues to be an ongoing activity and you are looking for help, too. So, I did a little research and talked to a few experts to figure out what I was doing wrong. I found out some interested things, including a couple of bad habits that I’m going to have to break. Two kids out of diapers is our family’s new year’s resolution. If it is yours as well, then join me now and let the adventure begin. The Test On average, most kids in the US are potty trained by the age of three, but that does not mean there is anything wrong if your child has not mastered the skill by then. While society tells us kids who train before three are “advanced” and those after are not, there is no scientific proof that shows a person’s intelligence is indicated by the age they learned to potty. So, cut yourself some slack if your four-year-old is still having
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accidents or your three-year-old is not the slightest bit interested. For those of us who have a unique situation—a child with a developmental or a physical disability— we need to get over the “age” factor. Instead, look for the traditional signs that your child is ready to train no matter what their chronological age. A word of caution, though: sometimes if you wait too long, you can actually lose the window of opportunity. A child with autism, for example, who relies on routine may resist training if they are not exposed to it soon enough. Physically, kids are ready to potty train anywhere from 18 months to three years, but it never hurts to talk with your doctor about any physical challenges or concerns that can stand in way of success. Bladder infections and constipation are painful and will deter any kid, special or not, from wanting to go to the bathroom. Additionally, if your child’s medical condition, like cerebral palsy or spina bifida, prevents them from controlling their bladder, training may not be the thing to do right now. Don’t forget about the sensory integration skills and muscle tone levels that can affect when your child
Opposite Page: ©Jorge Delgado/istockphoto.com
BY C HRIS T Y TAYLO R
feels the urge to go. If there are problems in these areas, he may not even realize that he is wearing a wet diaper, or if he does, he might not care. This can make it challenging for your child, and for you, to figure out when to get them to the potty in time. Besides making sure your child is physically ready to take on the potty training task, you need to make sure they are emotionally ready as well. Some kids find it scary and intimidating. Others get stressed-out and overwhelmed. Your intense desire to see them trained may also cause some kids to feel frustrated and nervous about the entire process. If you meet resistance when starting the training, back-off and wait a few weeks. Then, try again. Eventually you both will be at an emotional level ready to take on the task. Be sensitive to regressive behaviors that can result from stressful potty training, like tantrums and explosive behavior. If you notice a correlation between acting out and potty training, it may be best to take a time out and see what is the trigger. Start over again when you have solved the problem and everyone is ready to “go.” Don’t dismiss the control issue, either. Some kids see potty training as the prime place to hold their ground. You are not in control of your child’s bodily functions, so in reality no treat, threat, bribe or punishment will make them go. When it comes to the potty, your child has the upper hand.
DON’T GIVE UP! Some experts estimate that the potty training process can take up to three months of daily encouragement from parents.
Get Prepared So, your child has met the criteria and you think they are ready to get started. Great. What’s next? Ideally, a little planning and preparing. Start by letting your child have some exposure to the throne room. Now’s the time to let go of modesty and let them go with you to the bathroom. Children learn by example, so as they see you complete the steps, they will feel more prepared when it is their
Potty Training Checklist Toilet training readiness is directly related to growth and development. Use this readiness checklist as a guide to see if your child is ready to begin the toilet training process. MOTOR SKILLS Sits with or without support
COGNITIVE SKILLS Searches for his toys
LANGUAGE SKILLS Understands simple questions
TOILETING SKILLS Stays dry for more than an hour
Expresses needs
Knows what a potty or a toilet is used for
Squats down without losing his balance
Copies your movements and sounds
Walking alone
Plays make believe
Has a name for urinating and bowel movements
Dresses and undresses with minimal help. .
Plays quietly by himself for 5 to 10 minutes
Can tell you if her diaper is wet or soiled
Knows when he is wet Dislikes the feeling of a wet or soiled diaper
. .
FloridaCrossroadsOnline.com 23
turn. You can also use the opportunity for some pretend play with dolls (preferably ones that wet) and read a few books on the subject. Our household is particularly fond of a book called “The Potty Train” by Dar Draper. It is perfect for my son, who likes to pretend he’s the commode conductor. When it’s time to go shopping for a potty seat, let your child go with you and help pick it out. When you get home, let your child help put the potty in the bathroom and establish the new seat as the official place for number one and number two. Feel free to do a dry run, and let her sit on the toilet with her clothes on to overcome the initial intimidation. Elaine Shamloo is an infant toddler developmental specialist and frequently presents potty training workshops through the Western Panhandle Early Steps program. She says one of the most helpful things a
parent can do before they start the physical part of the training process is to spend a few days recording bathroom habits and observations of their child. It may be hard, but worth the effort, to log times of events like when your child eats and drinks and check their diapers to see when they wet and eliminate. After three or four days, you should be able to see a clear pattern of how long it takes after a drink or a meal to be ready to go the bathroom. If you can get this information, you’ll have a better idea of the most successful times to take them to the bathroom for training. Going to the Potty By now you have done all the homework. Your child is eager and ready to use their new potty. You know the best times for them to try. From here on out, the key is consistency. Once you start the routine, you can’t stop. Kids learn by repetition so the more they go, the more they’ll learn. If it helps, set a kitchen timer for when the next trip
Four Potty Pointers Keeping potty training consistent, clear and convenient can guarantee success. DON’T STOP Make sure “going to the potty” Is part of your child’s daily routine. Especially when they are learning, you cannot rely only on your child to tell you when he needs to use the potty. Also, try saying “let’s go use the potty” instead of “do you have to potty?” Keep the daily routine as predictable as possible and add schedule potty breaks consistantly throughout the day.
SET THE SCENE Kids with hyperactivity and sensory disorders can find the bathroom an unpleasant space. Its sights, sounds and smells can be overwhelming. Keep things calm by changing the lighting, making sure it smells fresh and muffling loud sounds that could startle. She’ll be more apt to potty train when she isn’t frightened of the bathroom.
PICTURE IT Some special needs children might have trouble remembering the steps to using the potty. Flash cards or picture boards are ideal ways to remind your child about the right way to use the bathroom. Draw or print pictures to demonstrate each step of the process such as pulling down pants, sitting on the toilet, wiping, flushing and washing hands.
OFFER SUPPORT Depending on your child’s disability, he may not be able to have full independence in the bathroom. Adapt by offering the right amount of physical support to build his confidence or finding ways to make the bathroom more accessible. A step stool and or handlebar installed on the wall can help your child feel more independent when using the potty.
24 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
to the potty will be. If you meet resistance from your child, cue them with five minute warnings. Entice them with a reward, but make sure you promise something you can keep up. If you do not intend to give him candy every time he goes to the potty after he has mastered the skill, then do not give him candy in the beginning. Opt instead for something fun like a big hug, or two minutes of tickle time. Charts and stickers are also good reinforcers that are fairly easy to phase out. Even if your child seems to be “getting it” try to remember that accidents are going to happen. It is okay to voice your disappointment, but try to stay clear of punishment or shame. Instead, review the steps of the process and keep trying. Night time training is a whole other subject and generally should only begin when your child can stay dry during nap time, or for more than six hours during the day. Keep It Up Now the real test will be to see if you can keep it going. Consistent trips to the potty will be the key in solidifying this new found skill. Don’t forget to be prepared when you leave the house, too. Keep a potty chair in your car or carry a fold-up travel potty (just make sure the child has seen it at home, before you present it out) when she has to go on the go. This step is always where things begin to unravel at our house. Armed with these new tips, and a little confidence, I think we might just do it this time. Yes, that’s right I am predicting 2011 the year of potty success.
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ideo games, like just about every other form of electronic entertainment, have come a long way since the days of Pong and PacMan. The graphics are sharper, the action is more intense and the games and their components are more complex. As the first generation of video gamers, who cut their teeth on Atari and Activision, are now becoming parents video gaming is a growing choice for families as a way to have fun together. It may be surprising for some, though to know just how inclusive the world of video gaming can be. Thanks to customizable games and adaptable hardware, gaming can offer a level playing field for kids with disabilities and their friends and family members. No longer do developmental, physical or cognitive delays have to stand in the way between a special kid and a world of digital fun. PLAYING GAMES The intensity and complexity of video games has greatly increased over the years, and can be intimidating for many people who are not avid gamers. The majority of games on the market today were created for people who are experienced with video
26 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Gamer: ŠAaron Harewood/istockphoto.com , Opposite Page: ŠMike Sonnenberg/istockphoto.com
GAME ON! V
Video gaming can be fun for everyone, including people with disabilities. The digital entertainment world is growing and more inclusive than ever before.
games and understand the way they work. They are driven by meeting time deadlines on certain tasks and mastering new levels of strategy and problem solving that some kids with special needs have a hard time accommodating for. On the other side of the spectrum, video games designed exclusively for the special needs community have in the past often fallen flat when it comes to the “fun� factor and quality graphics. It is very rare to find a game specifically made to meet the needs of a person with a disability that is on the same level as a mainstream game. That was the motivation, however, for Chuck Bergen, founder and president of VTree LLC, when he set out to produce a high-quality game that was totally customizable for any developmental or physical ability. VTree has been developing advanced virtual reality systems for physically and developmentally challenged groups for 12 years. They have developed educational software that therapists, schools and hospitals use to teach real-life skills to special needs kids. Computer programs that simulate things like navigating traffic and shopping at a grocery store help kids learn about personal and social skills in a fun way. VTree also has a virtual reality program that placed the player in the action of the screen long before the Nintendo Wii or the Xbox 360 Kinect came on the scene. I-C-Me is a software program and hardware webcam that uses green screen technology to give total, hands-free, real-time interaction for the player in a variety of different games. FloridaCrossroadsOnline.com 27
These educational games were great, but they just did not go far enough, according to Bergen. Parents from across the country had told him for years about their desire to find video games that were high-quality but still customizable for the special needs of their children. Bergen went to work and soon found an interested development partner in EA Sports, one of the leading video game developers in the world. Powered by EA Sports, Bergen’s VTree LLC was able to produce My Football Game last year as the first, highquality, adaptable video game specifically created with the needs of a disabled child or adult in mind. Players can use their computer, an adaptive controller or other USB device, such as an Xbox 360 controller, to play as well as adjust the time pressures, skill level and playing speed to settings that suit their needs. This year, VTree released another game with all the same adaptable features and high-res graphics. My Golf Game debuted in September
and has been letting players putt, swing and drive in a game that is above par. In an effort to make the game even more accessible, My Golf Game can not only be played with the computer keyboard/ mouse, adaptable consoles or an Xbox 360 controller, but it can also be used with speech recognition technology, such as that found in newer, Windows 7 machines, and touch screen monitors. My Golf Game features PGA Tour golfer and three-time Major Champion Ernie Els and allows
players to tee off against him in a variety of courses. Els and his wife, Liesl, have a son with autism and understand the world of special needs parenting. Els says he was proud to be associated with the game and lend his name to its title. A percentage of the sales of My Golf Game go to The Els for Autism Foundation, founded by the Els family in 2009. The vision of the Foundation is to raise money and build a world class “center for excellence” that will put all of the services a child with autism needs, like cutting-edge education, therapy and research, under one roof. Bergen hopes to produce more products like My Football Game and My Golf Game that not only have the needs of special kids in mind, but are also built with the goal of full inclusion. The games come packaged to look like every other video game on the market and play like a regular video game as well. Being able to customize and choose individual configurations lets brothers and sisters, friends and competitors of all ages and abilities play side-by-side Continued on page 30.
Low Vision? No Problem Audio Games The number one audio game site that is used for the visually impaired. Players use their hearing to stay in the action. AudioGames.net
Z-128 Software Game collections for the whole family, including kid puzzles and games for the children who love to mess around on the computer. Z128.com
28 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
Inclusive TLC In addition to switches and touch screen software, Inclusive TLC offers games that can easily be adapted for blind children. InclusiveTLC.com
©Cliff Parnell/istockphoto.com
You might think that being blind or having low-vision might cause a problem when it comes to playing video games. Think again. There are lots of games specifically made for the visually impaired that use sound cues and speech recognition features. Here are a few resources:
Family Matters Providence Academy in Orlando were the winners of our coloring contest. The assignment was to draw pictures of your family. Here’s what they submitted: Roberto Michel Age 9 Bryan Zayas Age 16 Shawn Batchelor Age 17 Matthew Schiavoni Age 11 Kyle Savole Age 12 Michael Calvo Age 13
Aidan Foley Age 8 Connor Daintry Age 11 Savanah Seaman Age 16 Nathan Hughes Age 9 Juwan Campbell Age 11 Cory Boone Age 14
FloridaCrossroadsOnline.com 29
We’re Looking For Kids Who Make a Difference. If you know an amazing kid who has reached out to help others, visit everychildmakesadifference.com
and tell us their story. Help us create a star out of a young hero with a big heart.
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without compromising or changing the way they prefer to play. BUILDING THE TOOLBOX A physical disability is no reason to hold back a budding gamer from enjoying the fun. There are plenty of options for controllers, switches, mounts and accessories that can allow everyone the chance to play. Leading the way in accessible video gaming devices is Mark Felling, an engineer and techsavvy trainer/developer who was paralyzed in a plane crash in 2003. Before his accident, Felling worked in technical sales and marketing and always had an interest in high-tech gadgets. When he became paralyzed he gained a new perspective on the term “hands free.” He had to learn how to turn on items like cell phones and computers without the use of his arms. Felling harnessed his frustration into a company called Broadened Horizons with the goal of providing independence to people with disabilities by giving them the tools they need to do their best. Broadened Horizons has a line of adaptable video game controllers that are engineered to work with all of today’s popular gaming systems. People with limited arm movement, hand dexterity or muscle strength can find a device that will work and help them play on with everyone else. ABLE GAMING Last year avid gamer Mark Barlet created an organization committed to making video games more accessible for people with disabilities. As president of the AbleGamers Foundation, Barlet has not only paved the way for
For nominations visit:
everychildmakesadifference.com
gaming as a way to enhance the everyday experience of a special needs person but he has also advocated to the industry for more accessible options in software and equipment. Barlet was inspired by a close friend whose battle with multiple sclerosis prevented her from her favorite passtime. The impact of her inability to share in the gaming experience outlined Barlet’s mission. “Just like that, a disability took away something important to someone. Took away her ability to connect with her friends and family. Took away a very important social aspect of her life,” Barlet said. Barlet estimates that as many as 33 million people fall into the “able gamer” category. It is a large enough number that should get the attention of mainstream developers. Through the Foundation’s Path to Games Accessibility Project, AbleGamers hopes to bring leading games accessibility experts, game technology vendors and lead game programmers, producers, artists and testers together to identify technologies and processes that can enhance the digital experience for people with disabilities and allow them to better play the video games they want and love. To further the Foundation’s objectives, they created an online magazine, AbleGamers.com, that gives product reviews, accessible equipment guides and forums for gamers around the world to talk about gaming and share secrets. The options for families to participate in video gaming has never been greater. With the right tools, everyone can play and get their game on, together.
Opposite page: ©Vitaly Titov/Dreamstime.com
AMAZING THINGS HAPPEN EVERY DAY!
Continued from page 28.
DOGGONE GOOD READERS WHAT IT IS: Using dogs to build and encourage a love for reading among children and a way to practice communication skills, fluency and comprehension. WHO IT BENEFITS: all kids, including children with learning disabilities, ADHD, autism, Asperger’s Down’s Syndrome, speech delay and others.
I
f you didn’t know any better you might think Journey, a blonde wavy-haired golden retriever, could read. She sits quietly next to her reading partner, a seven-year-old boy with autism named Joshua. She follows along on the page as he reads aloud and seems oddly intrigued by what he is saying. For all we know, maybe she is reading. Joshua sure seems to think so. He is happy to tell her about his new book and read her its words. So, does it really matter if Journey is truly reading or not? No. Joshua is reading and that is what counts. Reading Education Assistance Dogs (R.E.A.D.) are doing their part to help kids of all ages and abilities across America improve their reading skills. Since Intermountain Therapy Animals, a non-profit organization that provides animal assisted therapy
to people with disabilities, launched R.E.A.D. in 1999 dogs have been silent coaches for kids learning to read, or having trouble reading. The program could not have come at a better time. America Reads, a national literacy awareness program, suggest that 40% of today’s fourth graders read below their grade level. The American Library Association estimates that 27 million adults in this country are functionally illiterate. Getting kids to read, and read well, is an important task and vital to a child’s success. Because of their non-threatening, friendly attitude R.E.A.D. dogs seem to help kids build the confidence they need to read out loud while at the same time dramatically improving their fluency and comprehension. Researchers at UC Davis in California did a study of R.E.A.D. programs at elementary schools in their area. Three of the classes they observed were able FloridaCrossroadsOnline.com 31
to have reading time with therapy dogs, while one class did not. Over a 10 week period the three classes who did participate with R.E.A.D. had improved in fluency from 12 to 46 percent. The class that did not receive therapy reading showed no improvement. It all starts with a dog that has been through extensive obedience training and is a registered therapy dog. R.E.A.D. dogs have been closely tested to make sure their temperament, and energy level, can withstand any situation—including prolonged interaction with preschoolers and small children. Once approved the dogs complete a specialized training program and get matched up with a school, library or community center and start working with kids. Dogs usually spend around two hours at a time, working in 15 minute intervals with the kids. Teachers identify kids within their classes who could benefit from reading assistance. The kids sit down with a book and their new canine companion and are encouraged to read and teach. Merilee Kelley is the chairman of READing Paws and is a licensed R.E.A.D. instructor. She coaches teams all over the Southeast, but participates
with her own dogs in schools and libraries in Ocoee, Florida. She says the way the partnership works between the kids and the dogs is nothing less than magical. “It is amazingly empowering for these kids,” Kelley says. Her own dogs, Erica, Kalua, Abbi and Cari clamor to be the one who attends school for the day. From the moment she pulls the official R.E.A.D. vest and leash off the wall they start jockeying to be the one who gets to go. The kids who are chosen to participate in the R.E.A.D. programs at their schools are usually ones who are having trouble reading. Kelley says R.E.A.D. handlers work closely with teachers, reading coaches, and literacy specialists to work toward a goal set for each child. Through weekly sessions, the kids get practice reading to the dog and sharpening their skills. Handlers have been trained to act as interpreters for the dogs, and know when to ask the right questions to get the right results from the child. Kelley says she frequently asks kids to explain a page to the dog because “he just didn’t quite understand it.” As a result, the child takes on a teacher role and starts recapping the story for the dog to understand and improving the child’s comprehension of the story.
The potential of Reading Education Assistance Dogs for kids with special needs goes even beyond helping them become better readers. For those with developmental disabilities like Down’s syndrome or autism, learning how to follow-through with directions and becoming socially engaged in the process seem to be by-products of the reading practice. For Joshua, it opened up a whole new world. Joshua’s therapist TIME FOR PAWS had been taking him on Joshua, a 7-yearweekly public outings old with autism, to help encourage reads a book with embarrassed if they do peer interaction and new pal Journey. not know a word or if they pretend play skills, stumble over a sentence when she discovered here or there. Eventually as they R.E.A.D. As Joshua started to grow practice, their skills sharpen and more attached to Journey, his the fear of reading in front of other therapists and parents started to see a positive change in his attitude people subsides. As a child progresses and personality. He became more through the program, they are interactive, more empathetic and given additional supports and more involved in what family encouragements. Sometimes members were doing and feeling. it is a new book that has been “Reading to the dogs gave him “pawtographed” by their new the last piece of the puzzle to make friend. They also receive medals him whole,” Ginger Rasmussen, and awards for reaching their goals. Joshua’s mom, said. “It opened One of the biggest motivators, up a part of him deep inside though, is the undivided attention that even years of therapy and of the dog for the 15-minute encouragement and human love session. When time is up, kids feel could not. The quiet, patience of a dog opened a door that we thought intimately connected to “their” dog and are proud of teaching him a few was locked forever.” new tricks. The R.E.A.D. program is R.E.A.D. programs are lead by designed to help all children improve literacy and develop a love volunteers at every aspect. Trainers and pet owners create their own of reading. Reading out loud can teams and organize events and be very scary to a child, especially programs in their communities. to one who is not so sure of herself. There are no paid staff members or The dogs act as a friendly, nonsalaries to pay for the time it takes judging audience who patiently to make it happen. Fueled by love, wait and follow along at the and a sincere belief in what they are child’s pace. Children do not feel doing, R.E.A.D. organizers donate pressured to perform and are not
their time and talents. As nonprofit organizations, the individual programs are set-up to take donations and use that money to buy books, supplies and materials. The program has received national recognition and backing from the educational community and others. Congress has declared November 14 as National Reading Education Assistance Dog Day as a time to honor the dogs and the service they provide. There are R.E.A.D. programs all over the state of Florida. To find one in your area, start at the website therapyanimals.org, click on R.E.A.D. and go to the Find Local R.E.A.D. Programs and Workshops link. If your school or library does not participate, contact a R.E.A.D. team and find out their availability. Realize, though, that the program’s popularity means that the teams may not be able to immediately take on new locations if they do not have enough volunteers and dogs to staff it. At the same time, for therapy trained and registered dogs, handlers can contact the same organizations to volunteer and get involved.
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What’s Up? SOUTHWEST
January 2011
SOUTHWEST FL CAR AND MOTORCYCLE SHOW Jan 9, 2011 Ft. Myers Event to benefit “Barbara’s Friends” The Children’s Hospital Cancer Fund. For more info, call 239-9853578.
WEST
December 2010 NATHANIEL’S HOPE CAROLING FOR KIDS December 25, 2010 • Central Florida Since Christmas Day in 1998, Nathaniel’s Hope has been committed to sharing hope and encouragement with kids, families, and caregivers at children’s hospitals and with homebound VIP families on Christmas Day through caroling and bearing goodies and gifts. Find out how you can be involved as a singer, or to request a carol, at nathanielshope.org.
SOUTH
January 2011 TRANSITIONS 2011: HIGH SCHOOL TO HIGHER EDUCATION Jan. 28, 2011 • 7:30am - 4pm Lynn University • Boca Raton, FL A conference for parents, principals and headmasters, psychologists, guidance counselors, special education teachers, educational consultants and students.
lynn.edu/transitions WALK ABOUT AUTISM Jan. 29, 2011 • 10am - 2pm Miami Gardens, FL Walk benefiting UM-NSU and FAU CARD, Dan Marino Foundation and the Autism Society of Miami-Dade & Broward. Support. DanMarinoFoundation.org
2010 HOLIDAY DANCE Dec. 12, 2010 • 4:00 - 6:00pm Van Dyke Church Gymnaisum Lutz, FL Semi-formal dance for individuals with special needs ages 12 and up. Event is free of charge. For more information, contact Janet Atkinson at 813.240.5218
January 2011 ING MIAMI MARATHON Jan. 30, 2011 Miami, FL UCP of South Florida has been selected as a charity of choice for some runners participating in this event. UCPSouthFlorida.org
NEXT STEPS SEMINAR Jan. 11 2011 • 6:00 - 7:30pm Education & Conference Center All Children’s Hospital Next Steps Seminar is an informational seminar to discuss possible services after Early Steps. Join us to learn about transition service options for your child after
My dad,Tim Harrington Jr. is my agent, let him be yours too! Call Brightway Insurance 727-789-2200 for all your insurance needs.
34 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS
December 2010
POLAR PLUNGE Jan. 22, 2011 Aquatica, Orlando, FL Aquatica is usually warm and tropical, but for one day only they’re icing down their wave pool so you can experience the “thrill of the chill” while supporting a great cause. specialolympicsflorida.org
CAROLING FOR KIDS Dec. 25, 2010 Orlando, FL Spread holiday cheer to homebound and medically fragile families with Nathaniel’s Hope. Sign up to carol, or to be visited, at nathanielshope.org.
EAST WEST SHRINE GAME Jan. 22, 2011 Citrus Bowl, Orlando, FL The East West Shrine Game pairs top collegiate senior athletes from across the United States in a gridiron battle. Proceeds benefit
they turn 3 years old. Reservation required. Contact Paula Keyser at paula.keyser@allkids.org or call (727) 767-6705.
CENTRAL
the Shriner’s Hospital for Children. Order tickets at shrinegame.com. 30TH ANNUAL DICK BATCHELOR RUN FOR THE CHILDREN 5K Jan. 29, 2011 • 7:00am Universal Orlando Resort The 30th Annual Dick Batchelor Run for the Children 5k benefits The Howard Phillips Center for Children & Families. Proceeds from the run go to support child abuse treatment and prevention work being done at The Howard Phillips Center. Log on to orlandohealth.com for info.
January 2011 18TH ANNUAL STATEWIDE CARD AUTISM CONFERENCE Jan. 15-16, 2011 Lake Mary Marriott • Lake Mary This year’s Conference, THINK AUTISM, will feature more than 25 nationally recognized presenters, and is designed for educators, service providers and families of individuals with ASD to learn about state-of-the art practices and programs to support optimal develop of children and adults with autism and related disabilities. To register online, CARD.ucf-card.org. SAILING THROUGH TRANSITION Jan. 20, 2011 UCP Holloway Center, Orlando, FL Professionals from Early Steps and central florida public schools will present and answer questions from parents about to transition a child into the school sytem, or who have transitioned. RSVP to Rose Mary Lumm at 407.317.7430 x 2201 or email Rose.lumm@orlandohealth.com
What’s Up In Your Area? Send your upcoming events, support group meetings, and other happenings to editorial@FloridaCrossroadsOnline!
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Imagine a place where there is no such thing as normal. Challenges are celebrated. Barriers are broken. Success is measured in smiles. We can see it, can you? Our goal at Florida Crossroads Magazine is to support parents of special needs children by giving you information that is useful and relevant, inspiration that will encourage you to push past your highest expectations and inclusion opportunities that will help you feel that your family “fits in� to the world around you. Join us in print, online and in the community as we provide you with a place to cross paths with other families just like you and discover life-changing opportunities, together. If you are ready to be included, then turn here.
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36 DECEMBER 2010/JANUARY 2011 FLORIDA CROSSROADS