INFORMATION + INSPIRATION + INCLUSION
OCTOBER/NOVEMBER 2010 FloridaCrossroadsOnline.com
pitch your tent and head outdoors for a great family experience. p. 22
tips for winning the cold & flu season battle, p. 11
Provisions of the Affordable Care Act are In Effect. See which ones on P. 13. FloridaCrossroadsOnline.com
| OCTOBER/NOVEMBER 2010 Florida crossroads
Oct/Nov 2010 30
What’s Up? Get a list of fun fall activities and upcoming events in your area your family will enjoy.
ON THE COVER 11 Weathering Flu Season Get ready for the fight of the season with these helpful tips and suggestions.
COVER STORY N + INSPIRATION
INFORMATIO
Sophia Wood
+ INCLUSION
Age: 4
BER 20 0
OVEM OCTOBER/N
om
oadsOnline.c FloridaCrossr
12 Cast Your Vote For Our Kids Make sure you get out and vote this year, and put the focus on your kids.
© Duane Ellison/istockphoto.com
13 Health Care Checkup Parts of the new Affordable Care Act went into effect in September. Find out what it means for children with special needs. 19 How Safe Is Your Car Seat? Brush up on the rules of the road before you buckle up.
TENT ANd PITCh yOUR OORS FOR hEAd OUTd Ly A gREAT FAMI 22 P. ExPERIENCE.
INg TIPS FOR wINN FLU ThE COLd & LE, SEASON bATT P. 11
le Care the Affordab Provisions of t. Act are In Effec on P. 13. See which ones
line.com
FloridaCrossroadsOn
Nominate your child for Cover Story at FloridaCrossroadsOnline.com
Sophia is a beautiful four-year-old who was born six weeks early and later diagnosed with cerebral palsy. She is full of life and enjoys reading books, dancing, shopping and playing with her sister. Sophia’s hard work and perseverance continue to amaze her family and everyone she meets. Photographed by: Mike and Carol Gibson, Versatile Photography
FloridaCrossroadsOnline.com
Oct/Nov 2010 22 Camp Out Ready for the ultimate fall family vacation? Try camping out.
22
Florida State Parks are more accessible than ever.
26 Holiday Toy Guide These 10 fun, affordable toys are sure to top any one’s list this year.
FROM THE ROAD
5 Editor’s Letter
6 Crossroads Online
6 Happy Faces
MIX ‘N MATCH
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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.
7 The Great Pumpkin Pumpkin possibilities are popping out everywhere.
8 Mixed Bag
9 Your Child, The Hero Nominate your kid for making a difference! 10 Just Desserts Gluten-Free ideas for Thanksgiving treats.
PROFILE
15 Stand Together Statewide Advocacy Network on Disabilities 17 For The Boys The Morris Family.
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| OCTOBER/NOVEMBER 2010 Florida crossroads
30 Upcoming Events
33 Steps to Guardianship An introduction to this vitally important transition.
From the Road
EDITOR’S LETTER
Thanks and More Thanks
I
am happy to say my family successfully made it through the first day of school, the first sickness of the school year and the first trip to the dentist all within a couple of weeks of each other. Now, though still hard to Trick-or-treat believe, we’re gearing up for dress rehersal. Thanksgiving and Christmas. I guess time flies when you are having fun. It has been my personal pleasure to work on developing this issue of Florida Crossroads. I am excited about the content we have in this issue and I hope that you will find it useful and entertaining. I am also excited about the interaction we have been enjoying with you, our readers! It has been a lot of fun to see the comments on Facebook and the new profiles over in our Crossroads Community. Please continue to email us, post us and follow us so we can keep up with everything happening with you. We are also working hard to bring you even more opportunities to connect with us and with each other. Look for some exciting changes coming to FloridaCrossroadsOnline.com. As we approach Thanksgiving I think it is only fitting to talk a little about what I am thankful for. My list is longer than space allows, but at the top is certainly my two beautiful kids. I am thankful for the chance to see things through their eyes. Hearing their laughter, listening to their stories and seeing their growth, both physically and emotionally, takes my breath away sometimes and makes me ask myself, “why am I so blessed?” I’m sure each of you can relate. My advice this holiday: cherish your children, celebrate their innocence and be thankful to have them in your life.
Blessings,
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 Lesa Evans (Camp Out, p. 22) works with the Florida Disabled Outdoors Association (FDOA) Martin Merzer (Cast Your Vote for Our Kids, p. 12) is the Communications Director for The Children’s Movement of Florida, a citizen-led, non-partisan group with the mission to inform the political, business and civic leaders, and the parents and people of this state, about children’s issues.
7025 CR 46A, Suite 1071, #521 Lake Mary, FL 32746-4753 FloridaCrossroadsOnline.com
Mitchel I. Kitroser, Esq. (Steps to Guardianship, p. 33) represents children with special needs, estate planning, probate, trust administration, elder law and Medicaid planning and will be speaking at the “Weathering the Five Live Stages of Special Needs Planning” seminar in Palm Beach Gardens on November 2. FloridaCrossroadsOnline.com
From the Road reader poll
CROSSROADS ONLINE Will you take your family trick-or-treating this year?
77% YES 23% NO Join in the fun and take our reader poll at FloridaCrossroadsOnline.com
October Shane Kaufman Brandon Belzer Angel Negaglioni November Genevieve Katie Boxall Kelsey Blacken Sign up for our Birthday Club today at FloridaCrossroadsOnline.com
Check out the smiles on these little cuties.
Isabella, 6 years Avery, 3 years Larkin, 4 years Miami Lakes, FL Cape Coral, FL Sanford, 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
| OCTOBER/NOVEMBER 2010 Florida crossroads
Trick-or-treat: © Vatikaki/Dreamstime, Opposite Page: ©Sonya Etchison/Dreamstime
happy faces
TRENDS + TIPS + TOOLS
the great pumpkin
Whether you carve it, cook it or compost it the pumpkin has VIRTUAL many uses. Here are aTOOLS few you THE RIGHT PUMPKINS might not heard. Carve You can’t takehave a trip to the beach without building a without the mess at
Click on sandcastle. Sculpt like a pro by using a popsiclebloompetals.com. stick “Carve Your Own Pumpkin” to smoothly shape large areas and carve out turrets PUMPKIN and start cutting. When and towers and a toothpick for more precise, detailed BOWLING you’re done, you can decorations. Adorn withsea shells and it’s fit for a king. Fill some empty soda email it to a friend. bottles with a little sand or some pebbles to keep them fromTHE falling over.TOOLS Use a small RIGHT pumpkin as a bowling ball building a You can’t take a trip to the beach without and try to knock sandcastle. Sculpt like a pro by using a popsicle stick themareas down. PUMPKIN to smoothly shape large and carve out turrets
PRESERVE A PUMPKIN Keep your creation around a little longer by coating cut surfaces with petroleum jelly or vegetable oil to seal in the moisture. During the day, bring Jack O’Lantern inside and cover him up with a damp towel.
PICKIN’ and towers and a toothpick for more precise, detailed Looking the withsea shells and it’s fit for a king. decorations. for Adorn perfect pumpkin? Go to pumpkinpatches andmore.org to find THE RIGHT TOOLS a patch near you. You can’t take a trip to the beach without building a sandcastle. Sculpt like a pro by using a popsicle stick PUMPKIN to smoothlyPAINT shape large areas and carve out turrets Make an edible pumpkinand towers and a toothpick for more precise, detailed flavor finger paint perfect decorations. Adorn withsea shells and it’s fit for a king. for messy play. Mix together 1/2 c of canned pumpkin pie filling, 1/2 c of vanilla pudding and 1/2 c of cool whip.
FloridaCrossroadsOnline.com FloridaCrossroadsOnline.com
Mix & Match
From A Dad’s Heart
National Candy Corn Day, is Oct. 30 and how better to celebrate than with some sweet facts: The National Confectioners Association estimates that 20 million pounds of candy corn are sold annually. Candy corn has 3.57 calories per kernel A cup of candy corn has fewer calories than a cup of raisins. The tri-color of candy corn is said to mimic the appearance of kernels of corn, and is about the size of a whole kernel from a ripe or dried ear of corn. Discover the history of candy corn, recipes, activites and more at candy-corn.info.
Raising Awareness What groups are raising awareness in October and November? Check the list to find out: Down Syndrome Awareness October. To promote better understanding of Down Syndrome. For info: National Down Syndrome Congress, ndsccenter.org. Spina Bifida Awareness October. Spina bifida is the most common, permanently disabling birth defect in the United States. For info: Spina Bifida Association, sbaa.org. Epilepsy Awareness November. Get Seizure Smart about seizure first aid, recognition and types. For info: Epilepsy Foundation, epilepsyfoundation.org. Premature Awareness November. The March of Dimes’ national effort to save babies from premature birth. For info: March of Dimes, marchofdimes.com.
| OCTOBER/NOVEMBER 2010 Florida crossroads
The Road He Travels By Ryan Sprague Two roads diverged in a yellow wood, But this is the only path I know. A weary traveler, long I stood, And wondered if I ever would, Travel the road where my brothers go. Their way is smoother, but all is fair, I do not wish them off their road. In our family, my burden’s shared. It’s actually better that they are there. For from that path they can share my load. I doubt if I’d been given the choice, That I’d have opted for this trail. But I might have missed that still soft voice, That gives me the power to rejoice, And provides the wind that fills my sail. After many steps along my way, When at last my final breath is spent. I’ll look back fondly on that day, When the smoother path was taken away, And know why mine was different. Keep up with Ryan and Caedmon through his blog at nobodysnormal.wordpress.com.
Candy Corn: ©Lauri Patterson/istockphoto, Opposite Page: © Courtney Weittenhiller/istockphoto
Kinda Corny
Inspired by the classic Robert Frost poem The Road Less Traveled, Florida dad Ryan Sprague penned his own version as it relates to his Ryan and seven-year-old son, Caedmon, Ca edmon who has cerebral palsy Ryan says: “It is difficult to truly walk in someone else’s shoes. We can go where they go and perhaps share their experience, but we are unable to accurately see things from their perspective. This poem is my attempt to express what my son might be thinking. I tried not to force my ideas of normal or comfortable upon the poem, but instead, tried to put into words what I so often see him express in his smile.”
Mix & Match
Your Child, The Hero Do you know a special kid who has made a difference in the community? BY CHRIST Y TAYLOR
N
othing thrills me more than when my kids do something nice—without being asked. I get so proud that I share it with everyone I know. I’ll talk about it on the phone, share it with the teacher at school, and maybe even post it on Facebook. No matter if it is something big or small, I am happy to brag to anyone who will listen. You know how it is; I’m sure you’re the same way. If you are busting at the seams to share something amazing about your child, let me tell you about a perfect opportunity. Every Child Makes A Difference® is a community awards program organized by After Hours Pediatrics Urgent Care, designed to recognize and reward kids who have made a difference in their community. Parents, teachers, pastors, physicians—any adult who has been impressed by the actions of a young hero with a big heart—can submit a nomination form and explain in detail how the child has made a difference that positively impacted their community. From collecting canned foods for a food shelter to sending cards to soldiers, to creating a disability awareness campaign, the list of good deeds is limitless and open to anyone that has shown an action that
went above and beyond what was expected. The contest is open to any child or young adult between the ages of 5 and 21. The age groups are divided into two categories of younger (5-11) and older (12-21) kids. Six winners will be chosen every 6 months, and will be rewarded with a prize package valued at $2,500, as well as given the “star” treatment, including a crystal star trophy, an invitation to a “Red Carpet Awards Gala” and an actual star in the sky that will be named in honor of the child. The first group of winners will be announced in early January, with a deadline for nominations of December 17, 2010. Nominations will be accepted again from January 1, 2011 through
mid-July, with a second awards gala sometime next summer. Every Child Makes A Difference® is a chance to recognize positive role models and their achievements. The idea for the contest came about when an After Hours Pediatric Urgent Care patient decided for her 6th birthday party that instead of presents she would rather have her friends bring donations for the clinic’s Pajama Program, which provides new pajamas to children in need. If you have a child you would like to brag on, make sure you turn in a nomination. Go to everychildmakesadifference. com for the nomination form and contest rules, or call (813) 775-4024 for more information. FloridaCrossroadsOnline.com
Mix & Match: JUST DESSERTS
Gluten-Free Pumpkin Pie 1 can Libby’s pumpkin 1 can evaporated milk 2 eggs 1½ cups sugar 1 tsp. cinnamon ½ tsp. salt Whipped cream 1 Preheat oven to 400°. 2 Combine all ingredients for pie filling in a large mixing bowl. Beat until mixture is smooth and blended, about one minute. 3 Set unbaked gluten free pie crust on a large baking sheet. Pour filling mix into crust. 4 Bake in a preheated oven for 45 to 50 minutes or until a toothpick inserted in the middle comes out clean. 5 Garnish with fresh whipped cream dusted with cinnamon.
Gluten-Free Pie Crust
KITCHEN TIP: Find pre-made gluten-free pie crusts at amazon.com
1¼ cups gluten-free Bisquick or Pamela’s Product pancake and baking mix ½ cup margarine Boiling water
Peanut Butter Kiss Cookies 1 18oz jar of peanut butter 1¼ cups sugar 2 large eggs 1 tsp. salt 1 9oz package Hershey Kisses or dairy free chocolate chips 1 Preheat oven to 350°. 2 Mix eggs and sugar together then add peanut butter. Place dough in refrigerator for at least 30 minutes. 3 Roll into small balls and place on cookie sheet. (optional—dip balls in sprinkles or colored sugar)
10 | OCTOBER/NOVEMBER 2010 Florida crossroads
4 Cook 10-12 minutes. 5 Let cool for 1 minute. Press kisses in the middle, or spoon in melted chocolate chips. Submitted by Dawn Gelenski
Share your gluten-free, texture-friendly or kid-approved recipes! Send to editorial@FloridaCrossroadsOnline.com
Opposite Page: ©Catalin Petolea/Dreamstime
1 Place baking mix in a bowl. Add margarine. With a fork, mix or CUT, the margarine into the baking mix until there are moist clumps. 2 Boil a cup of water in microwave and add three Tbsp. to mixture. Using a big spoon, mix well, until it forms a ball. If dough is very dry, add one more Tbsp. 3 Place ball of dough on a nongreased aluminum pie pan. Sprinkle a small amount of gluten-free flour on top. Spread dough in pan and up the sides. 4 Place in freezer for 10 minutes. 5 Bake in preheated oven at 400°. for 15 minutes or until brown.
EDUCATION + ADVOCACY + ISSUES
Weathering Flu Season Arm yourself with the right stuff to combat that pesky little flu bug this year. BY N oel A lonso, M D, FA A P, Af te r H o u r s Pe d i a t r i c s U rg e n t Ca re
W
ith the winter season upon us again, influenza, or “the flu”, will be back and ready to infect all in its path. The flu is still a common cause of disease in the population, particularly to the young and old, as well to those with impaired immune systems. The flu virus is usually acquired through contact with an infected individual and presents with stuffy nose, sore throat, a hacking cough, muscle aches, headaches and high fevers. Its incubation period, from exposure to onset of symptoms, is about 24-48 hours. For most people, the flu is no more than a bad cold, and symptoms usually improve within 4-7 days. For some, the cough may last up to 2-3 weeks. Treatment is usually geared toward improving the symptoms: for fevers, acetaminophen (Tylenol) or ibuprofen (Motrin/ Advil) may be used and saline nose-drops may be given for stuffy nose. One should seek immediate attention if your child develops any other symptoms such as difficulty breathing, vomiting or earache. Also seek immediate attention if your child does not improve as expected or if you have any concerns. If you are sick with flu-like illness, Centers for Disease Control recommends that you stay home for at least 24 hours after your fever is gone, except to receive medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine. While sick, limit contact with others as much as possible to keep from infecting them.
Of course, there are simple yet effective ways to help weather this flu season: Careful hand washing. Wash your hands often with soap and water, and if soap and water are not accessible, use an alcohol-based hand rub. Avoid touching your eyes, nose and mouth, as germs spread this way. And teach your little ones to not touch their mouths, noses and eyes with unwashed hands. Cover your nose and mouth. Use a tissue when you cough or sneeze to cover your nose and mouth, and throw the tissue in the trash after you use it. Or, sneeze into your elbow to avoid spreading the germs. Try to avoid close contact with sick people. Get vaccinated. Many people wonder: when is the right time to get the flu shot? The answer is now. According to Centers for Disease Control, all people 6 months and older are recommended for annual influenza vaccination. Seasonal flu vaccines have a very good safety track record. Over the years, hundreds of millions of Americans have received seasonal flu vaccines. Be sure to consult with your primary care provider for further information and read the Vaccine Information Statement. For the latest flu vaccine guidelines, visit cdc.gov/Features/FLU/. Go to floridacrossroadsonline.com and submit your questions for our new “Ask A Doctor” section coming next issue.
FloridaCrossroadsOnline.com 11
Real Talk: ADVOCACY
Cast Your Vote for Our Kids
BY M artin M er z er , The Children’s Movement o f Florida
F
From Pensacola through Key West, the Children’s Movement of Florida spent the month of September rallying support for this state’s children with 15 “Milk Party” rallies and two other events in every corner of the state. Thousands of people joined us on this journey and thousands more will be joining us in months to come. But none of this does anyone any good unless noble intentions and platoons of supporters and growing momentum are transitioned into strength and power and action. And that means entering the political process, voting on Election Day and then speaking with your elected officials about children’s issues and other issues that concern you and your family. Budgets for early intervention services, special education and similar programs are directly impacted by our elected officials. It is essential that parents understand this—and that they make their voices heard. The prime purpose of our Milk Party rallies was education, information and motivation. These rallies represented only the first phase of an enduring effort to make Florida’s children the state’s top priority. As we all know, this citizen-led, non-partisan campaign will require patience and commitment, a tight focus and enormous energy. “If we pledge ourselves and our energies to a long-term, insistent commitment, I promise you that we will make a stunning difference in the lives of our children, and future of our state,” said David Lawrence, Jr., president and co-chair of The Children’s Movement of Florida, one of the nation’s leading advocates on behalf of children, and retired publisher of The Miami Herald. “We will achieve something great, something worthwhile, something that will endure long beyond our own lifetimes,” Lawrence said. As our bus, the Children’s Express rolled through Florida, we made clear that this was our objective: To educate political, business and civic leaders —and all parents in Florida—about the urgent need to improve the way we care for our children, making the well-being and education of our youngest and most vulnerable citizens Florida’s highest priority. We also made it clear that special concentration of our movement is being focused on early childhood, the years from birth through five years old, when science tells us that 90 percent of human brain development occurs. One of our first five areas of concentration involves early identification of—and treatment for—special needs. Soon it will be your chance to join with the many other families of Florida and stand up for our kids. The first opportunity comes on Election Day. After that, it will be important to continue dialogue with your elected officials, and continue to fuel the fire for our grass-roots campaign, who’s mission is not about raising taxes, but rather about raising children. . Find out more information about the current state of Florida’s children and how you can help at childrensmovementflorida.org.
12 | OCTOBER/NOVEMBER 2010 Florida crossroads
Voter: ©Henry Chaplin/istockphoto.com; Opposite Page: ©Tarragona/Dreamstime
Election day is Tuesday, November 2. When you head to the polls, remember who you’re voting for— your kids!
Real Talk: INSURANCE
Health Care Checkup
Real Talk: ISSUES
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
Certain provisions of the Affordable Care Act went into effect in September. Do children with disabilities have more options? BY C H R I S T Y TAY LO R
T
he Affordable Care Act was passed by Congress and signed into law in March 2010, and now portions of the Act’s “Patient’s Bill of Rights” have started to go into effect. At the top of the list are new provisions that pertain directly to children and kids with pre-existing conditions. Protection for Children Insurance policies purchased after March 23, 2010 can no
longer deny benefits or coverage to children under the age of 19 because of a pre-existing condition or disability. This new rule applies to job-related health plans as well as individual plans, but does not include “grandfathered” individual health plans (ones that were bought on or before March 23). The rule applies whether or not your child’s health problem or disability was discovered or treated before you applied for coverage.
The discouraging part about this provision is that many of Florida’s major health insurers have stopped writing new “child-only” insurance policies fearing that parents will wait to buy a new policy until a child is seriously ill or diagnosed with a chronic disability, knowing the child cannot be denied. This scenario would increase costs for insurance companies who rely on spreading out risk among all insured policyholders.
FloridaCrossroadsOnline.com 13
Real Talk: INSURANCE
Families in the market for individual child policies can still use the Florida Kid Care program, which is the state’s health insurance program for children. Kid Care continues to sell policies for children with pre-existing conditions at lower cost premiums, proportional to the family’s income level. (floridakidcare.org). When all Americans are required to obtain health insurance by 2014 the child-only policies will most likely find their way back into the marketplace.
The US Department of Health and Human Services thinks there are a few things you should know about health insurance options for people with disabilities, and what The Affordable Care Act will do to expand the options and make them more accessible:
Coverage of Young Adults Under Age 26 Before September 23, 2010 it was fairly standard for a child on their parent’s health care policy to lose coverage at the age of 19 (longer for full-time students). Now, adult children can remain on their family policy until the age of 26 even if they are married, not living with their parents, not a full-time student or not financially dependent on parents.
Starting as early as September 2010, jobbased and new individual plans won’t be allowed to deny or exclude coverage to any child under age 19 based on a pre-existing condition, including a disability. Starting in 2014, these same plans won’t be able to exclude anyone from coverage or charge a higher premium for a pre-existing condition including a disability.
Preventative Services Covered for Children If you have a health insurance plan or insurance policy that begins on or after September 23, 2010 you no longer have to pay a copayment, coinsurance or meet a deductible for a select group of screenings and preventative services. The covered services for kids include screenings for autism (at 18 and 24 months), developmental screenings (for kids under 3 years) and hearing and vision assessments.
Starting as early as September 2010, insurance companies won’t be able to drop you if you get sick just because you made a mistake on your coverage application.
14 | OCTOBER/NOVEMBER 2010 Florida crossroads
1 2 3 4
Starting as early as September 2010, insurance companies can’t include lifetime limits on your coverage.
Medicaid covers many people with disabilities now, and in the future it will provide insurance to even more Americans. Starting in 2014, most adults under age 65 with incomes up to about $15,000 per year for single individual (higher income for couples/families with children) will qualify for Medicaid in every state. State Medicaid programs will also be able to offer additional services to help those who need longterm care at home and in the community.
5
You may be able to join and get benefits from a voluntary, enrollment-based insurance program that will be available after October 2012 called the Community Living Assistance Services and Supports (CLASS) Program. It will provide assistance to people who need help with daily activities. Under this voluntary program, you’ll get a cash allowance so you can get care and other supports to help you keep your independence. Source: Healthcare.gov
Opposite Page: ©PKruger/Dreamstime
Among the other policies now in effect in the Patient’s Bill of Rights are no arbitrary rescinding of health insurance for application errors, no lifetime or annual limits on coverage and improving access to emergency services. Most of these new provisions that are hoped to put an end to some of the most controversial practices of today’s health care industry. The hope of the new law is to provide the patients who need the care the most, such as people living with disabilities or chronic illness, with the health insurance they need. Further details on the timeline of events for the Affordable Care Act, analysis and definitions of provisions and a side-by-side comparison of health care facilities can be found at healthcare.gov, a website maintained by the US Department of Health and Human Services for the purpose of educating Americans on new health care changes.
Top 5 Things People with Disabilities Need To Know
AGENCIES + ORGANIZATIONS + INDIVIDUALS
Stand Together STAND is about parents joining forces to help educate other parents about their rights and train them to be confident advocates for their children.
M
elissa Tremblay’s stand with advocacy for special needs children began when her daughter, Allison, was three- years-old and denied speech therapy through her school district. Frustrated and unsure of the next step, Melissa met with trailblazing special needs advocate Renee Whaley seeking advice. Mrs. Whaley walked her through the process and in six months Allison was receiving the therapy she needed. Melissa was impressed with the outcome and inspired by Mrs. Whaley’s instructions to “get educated” on the process. Taking her advice, Melissa contacted an organization called STAND, (Statewide Advocacy Network on Disabilities) and began immersing herself in the training and education they provided for parents learning how to navigate the system. STAND is a not-for-profit organization that was started in 1996 by a group of parents and attorneys who were looking to gain
understanding and acceptance for their children with disabilities. The group believes that the “opportunities to obtain appropriate education for children who are differently-abled can mean the difference between independence and dependence as adults.” Advocacy, legal rights and education are the three main topics STAND is committed to. By providing resources, consultations and trainings, they hope to increase community awareness of issues effecting individuals with disabilities while at the same time equipping parents with training that will allow them to assist other families fighting for free and appropriate public education. STAND is also the only organization in the nation that provides certification for special education advocacy for children with disabilities. Among its top priorities are: providing information on the rights of persons with disabilities, special education law, and legal and administrative procedures; maintaining a referral panel of attorneys FloridaCrossroadsOnline.com 15 FloridaCrossroadsOnline.com 15
who are concerned and interested in the rights of persons with disabilities and providing resources or referrals for selected legal cases where the issue may have a significant impact upon the rights of individuals with disabilities. With about 1,500 members, STAND relies on $25 annual membership dues to fund its programs. The group’s leadership is all volunteer and comprised of parents doing their best to help other parents. Melissa is one of those parents. As a member of the Board of Directors, Melissa is happy to provide help and advice to other families, and for the past four years has organized an event in Pinellas County called SPARC (Stand Pinellas Accessing Resources Conference). SPARC 2010 took place Sept. 11 at Morgan Fitzgerald Middle School in Largo and brought in over 600 people from as far away as Jacksonville and Miami. It featured an 140-vendor exhibit hall, 15 different education sessions and unique breakout events, like testing out a hyperbaric chamber and a demonstration of electroacupuncture for treatment of autism. The date for next year’s event has not yet been set, but is usually sometime in early to mid-September. A save the date will be posted in January with preliminary details. To get on the announcement list go to STANDS’s website at standadvocates.org click on Contact Us and fill out the form. While on the site, you can learn more about STAND and become a member. You will also find resources including articles on IEPs, sample letters and forms to present to school administrators, links to state and federal agencies and history and legal interpretation of IDEA and Section 504.
Attendees at SPARC 2010 visit with vendors in the exhibit hall. Over 140 vendors were in attendance to provide information and resources for families.
16 | OCTOBER/NOVEMBER 2010 Florida crossroads
We are looking for organizations to profile. Email us at editorial@FloridaCrossroadsOnline.com.
PROFILE: THE MORRIS FAMILY
For the Boys
BROTHERLY LOVE The Morris boys ready for trick-or-treating: Zee, 3, Ethan, 6, and Elijah, 5.
Lauren and Brian Morris strive to do all they can to meet the needs of their three amazing kids.
I
t is a natural instinct for a mother to protect her children. At the very first hint of danger, she stands ready to swoop in and shield her little ones with love and security. For Lauren Morris, this instinct kicked in when her oldest son Ethan was around 15 months. As Ethan transitioned into the toddler years his lack of language gave Lauren a nagging feeling that something was wrong. She approached her pediatrician with her concerns and had Ethan evaluated. Early Steps authorized home speech therapy for developmental delay and when he turned three, Ethan was evaluated again and diagnosed with autism. At that point Lauren, and her husband Brian, threw themselves into early intervention.
“I see it as my job to provide them with the best care I can give so that they become adults who not only function, but are happy, contributing members of society.” Lauren said. The Morris’ committed their family to an intensive home-based ABA program. The treatment schedule included 20-25 hours a week with a therapist in the home helping to create behavior plans and facilitating its provisions. Lauren took ABA and speech and language coursework to be able to keep up the program when the therapists were not in the house. “We lived and breathed it,” Lauren said. Their efforts paid off as Ethan made great strides in his behavior
and social skills. Lauren enrolled him in a preschool that allowed him to have modified hours and an adult to shadow him and reinforce his progress and success. As Ethan began to communicate more and adjust comfortably with his peers, he was able to spend more time at school and needed the shadow less and less. When it was time for kindergarten, Ethan no longer met autism criteria and was placed in a mainstream class. While the Morris’ were dealing with Ethan’s diagnosis and treatment, their middle son, Elijah, was undergoing a medical crisis of his own. Elijah had been developing typically as a baby, but when he turned three Lauren noticed he started falling down a FloridaCrossroadsOnline.com 17
lot and getting more tired, more her dad’s suggestion, Lauren made quickly. He seemed to be regressing an appointment for Elijah at the in behavior and self-help and Cleveland Clinic’s genetics and Lauren feared Elijah was down the neurology departments. similar path of his older brother. She Elijah was seen by a began behavioral intervention with Neurogenetictist/Neurometabolic him and started consulting with Specialist who observed and tested specialists and doctors. him for a variety of disorders and An EEG and MRI came back conditions. After the testing, the normal, but blood work screening Morris’ headed back home to Florida for metabolic conditions came to wait for the results. To Lauren’s back abnormal. The doctor surprise, and fear, there was a recommended waiting three message from the doctor on her months and trying the blood work answering machine shortly after again. After a second test came returning from their visit. back with abnormal results, Lauren “I thought, this can’t be good,” started to investigate further. Lauren said. “It usually takes forever Her father, who is a physician to get test results and here I come and on the Alumni Board of the home and find a message from the Cleveland Clinic, happened to doctor himself.” attend a meeting at the clinic in Elijah’s blood work pointed Ohio and listened to a presentation to mitochondrial disease. about how general laboratories Mitochondria are specialized may not have the proper protocols compartments present in every cell for complex genetic testing. In of the body except red blood cells addition special expertise is required and are responsible for creating to interpret more complicated more than 90% of the energy the conditions emerging body needs to sustain life and through a patient’s support growth. When the HAPPY FAMILY blood work. Taking mitochondria fail, less and less Lauren and energy is created by the cell Brian Morris are and can result in cell injury devoted to their and even cell death. If the three boys. mitochondria breakdown is repeated throughout the body, vital systems like the respiratory or heart system can begin to fail. According to the United Mitochondrial Disease Foundation (umdf.org), 1,000 to 4,000 children in the United States are born with a mitochondrial disease every year. The exact number of children and adults diagnosed with mitochondrial disease is hard to determine because many people are frequently misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging. 18 | OCTOBER/NOVEMBER 2010 Florida crossroads
Though it is a genetic disorder, Lauren and Brian had no history or other warning signs they could be carriers. Ethan, nor the couple’s youngest son Zee, has shown any signs or symptoms of the disease. Elijah’s diagnosis was a huge blow to the Morris family and they were not sure what to do next. After a lot of research, doctor consultations and a fresh muscle biopsy, Elijah began a series of medications and started working to get stronger with speech therapy for weakness in his mouth and jaw, hippotherapy and swimming for building muscle and any other exercise his body could tolerate. The Morris’ have had to learn how to help Elijah anticipate his needs and get enough rest and nutrition to stay healthy. “We have to keep an eye on him all the time to help him save his energy. It’s hard explaining that to a five-year-old,” Lauren said. Currently Elijah attends typical pre-school three days per week and is doing well. Lauren’s concern now is for kindergarten next year, figuring out what type of setting— public school or home school— would best meet his unique educational and medical needs. Having two children with special healthcare needs has made life interesting for Lauren and Brian. There are constant medical and therapy costs but they have learned to make it work. Not living beyond their means, fighting insurance companies to provide coverage for services such as ABA, and finding medical grants along with a positive and optimistic outlook about the future, has helped them along the way. “With three kids there’s always something and with us it’s always a little something extra!” Lauren said.
It’s hard to believe, but the National Highway Safety Administration estimates that 90% of car safety seats are installed improperly. Car seats are one of those things that we have a tendency to take for granted. Day after day we buckle everyone up, but we don’t always pay attention to how the seats are positioned in the car or how our kids are fitting in them. So, whether you are heading out on a holiday road trip or just dropping the kids off at school it won’t hurt to brush up on a few facts about correct car seat safety. The Right Fit: The options for infant and children’s car seats have greatly increased over the years. It can be downright confusing navigating the long aisle at the store, or searching through images online. Generally, all car seats available to the public have met certain safety standards and are considered safe. Knowing that, the right choice depends on what best fits your vehicle and your child. Rear Facing Infant Only Seats For birth until approximately 20 to 22 pounds. You may need to move the infant to a rear facing convertible seat so that they can continue to be rear facing until at least one year of age and at least 20 pounds.
Rear facing/Forward Facing Convertible Seats Rear Facing seats are used until approximately 22 to 35 pounds. Some seats with higher rear-facing weight limits allow children to rear face as long as possible, until they reach the maximum weight or height allowed by the manufacturers. Forward facing seats are appropriate for kids who are at least one year of age and 20 to 40 pounds. Most experts agree that rear-facing seats are the safest for infants and young children, so do not rush to turn them around. As long as they are comfortable, and you are following the seat’s specifications, keep them rear facing. Forward Facing Only Seat with Harness For kids who are at least one year of age and 20 to 40 pounds. Some seats go up to higher weights. Belt-positioning Booster Seat Appropriate when a child is over 40 pounds and approximately 4 to 8 years of age. This type of seat must be used with a vehicle lap/shoulder belt.
t
Vehicle Lap/Shoulder Belt Removing the car seat and only using the vehicle’s lap and shoulder belt should not happen until the child is around 4’9” tall and 80 pounds. This is usually around 8 to 10 years of age. Kids with special needs are no exceptions to these rules. Parents should follow the same height and weight requirements as everyone else. That being said, there are some kids whose medical conditions might require special consideration when shopping for a safety seat.
FloridaCrossroadsOnline.com 19
Here are some basic guidelines that may help you decide if a specialized restraint is more appropriate for your child than a conventional child safety seat. Behavioral Challenges Children who exhibit behaviors such as impulsiveness, distractibility, and short attention span, like those with autism or ADHD, may have a hard time staying safely restrained in their child safety seats. The constant checking to make sure they are still “buckled in” can also be a huge distraction for a driver. Families may have to try a variety of seats to see which is the most difficult for the child to escape. Harness systems must be properly secured and snug to work well. Child safety seats that have harness systems for use beyond 40 pounds may also help. Additionally, an E-ZON Vest with back closure or a large medical seat may end up being the right solution for older children. Cerebral Palsy For children with CP who experience poor head, neck, and trunk control, it’s best to stay rearfacing to higher weights than other
kids. In a crash, forces are spread over the back of the child safety seat and the child’s back. The child is at less risk for neck and spinal cord injuries when rear facing. When the child is too big for a rear-facing seat using a forward facing only seat that can be semireclined can work. This position can help keep the child’s head from falling forward if head control is an issue. Rolled blankets or foam placed along each side of the child can also assist with centering the head and torso. Children who have poor upper body strength will require the support of an adaptive restraint or large medical seat once they outgrow a standard child safety seat. Work with a therapist to help select the adaptive restraint that provides the child’s best positioning. When a wheelchair is used for the main method of mobility, there are a few things to consider. Many wheelchairs are not designed for transportation purposes and would not be safe in a crash. If possible, a child should be moved from the wheelchair to an appropriate restraint system during travel. If that is not possible, than it is necessary
to find a safety-rated wheelchair. (visit wheelchairnet.com for help in choosing a transport safe wheelchair). Spina Bifida The initial treatment for spina bifida involves surgery, so during the post-operative period, a car bed may be helpful. A car bed or child safety seat that reclines is also useful for children with hypoventilation. Many children with spina bifida can be positioned rear-facing longer because they are usually smaller in size and have lower tone. Older children may benefit from a large medical seat that provides additional positioning support. Tracheostomy Kids who have tracheostomies should avoid safety seats with shields or trays. These could hit the trach during a crash or sudden stop. Any medical equipment that accompanies the child should also be secured. If the equipment uses batteries, it should have enough power for at least double the length of the trip. An emergency plan should be in place in case
Florida’s Special Needs Occupant Protection Program The Florida Department of Health oversees this program that loans specialized child restraints and seats to kids who need them. Funded by a grant from the Florida Department of Transportation, the Special Needs Occupant Protection Program has eight locations around the state that provide access to the specialized seats as well as car seat inspectors who have been trained for special needs transport. You can find contact information for the program by calling (850)245-4440. Download a map of locations and contact phone numbers at www.doh.state.fl.us/demo/InjuryPrevention/occupantprotect.html Alachua County Shand Children’s Hospital Gainesville, FL
Escambia County Sacred Heart Hospital Pensacola, FL
Orange County Arnold Palmer Hospital Orlando, FL
Broward County Joe DiMaggio Children’s Hospital Hollywood, FL
Hillsborough County St. Joseph’s Children’s Hospital Tampa, Florida
Pinellas County All Children’s Hospital St. Petersburg, FL
Dade County Miami Children’s Hospital Miami, FL
Lee County Children’s Hospital of Southwest FL Ft. Myers, Florida 33908
Leon County Florida Dept. of Health, Office of Injury Prevention Tallahassee, FL
20 | OCTOBER/NOVEMBER 2010 Florida crossroads
the tracheostomy tube comes out during travel. Down Syndrome Children with Down syndrome may have decreased muscle tone or unstable neck bones, so it is best to keep them rear facing as long as possible. Use a car safety seat with harness straps until your child outgrows it. A convertible car safety seat can be used forward facing until your child weighs about 40 pounds and is about 4 years old, or until your child’s shoulders are above the top harness slots. A combination car safety seat also will allow your child to remain in a harness up to 40 pounds. Some convertible and combination seats have harnesses that fit children over 40 pounds. A combination seat can be changed to a belt-positioning booster seat when your child is too big for the harness. Children with Down syndrome often have decreased muscle tone and loose ligaments which can make their joints very flexible, making it easier for them to wiggle out of the car seat. If that happens, make sure the harness straps are tight with the chest clip in the middle of the chest. If your child still gets out, you may need a different seat. If your child is big enough to use a booster seat or safety belt but doesn’t keep it on, you may need to use a travel vest or a large medical car safety seat. The safety guidelines for kids with special healthcare needs varies depending on the child and their diagnosis. One of the best resources for further information on the subject of special needs transportation is the Automotive Safety Program at Riley Hospital in Indiana. You can consult their website at preventinjry.org or call them at (800) 755-0912 FloridaCrossroadsOnline.com 21
22 | OCTOBER/NOVEMBER OCTOBER/NOVEMBER 2010 2010 FLORIDA FloridaCROSSROADS crossroads
Nothing can bring a family closer together than going camping. Roll out the sleeping bags and pitch a tent while we show you how to make it fun for everyone.
N
ow that the weather is cooling off, it is the perfect time to go camping. Whether you plan to camp using a tent or RV, the relaxed atmosphere of a camping trip can provide many opportunities. Through camping, families can reap the immeasurable benefits of living an active life. Health-wise the benefits of camping range from the strengthening of bones and muscles to a reduction in the health risks associated with a sedentary lifestyle. Also, the stress of everyday life can be relieved by watching wildlife in their natural habitat or the vivid colors of a gorgeous sunset. Camping gives people with and without disabilities the chance to slow down and take pleasure in nature.
BY LES A E VA N S
FloridaCrossroadsOnline.com 23
Camping is an inexpensive way to take a family vacation that will create memories for years to come. The first thing to do is find the right spot. Selection of a terrific campground can be found through the Florida State Parks. This year marked the 20th anniversary of the Americans with Disabilities Act and the Florida State Parks are more accessible than ever. To reserve a campsite or a cabin at a state park anywhere in the country call 800-326-3521 or go to reserveamerica.com. The state parks offer a discount of halfoff the camping fee base rate for people with permanent disabilities. Another great resource is the Florida Park Service’s website at floridastateparks.org. Look for the “Access for All” tab to find valuable information about accessibility to beach wheelchairs, fishing piers, trails, and boat tours in Florida’s State Parks. The National Park system also offers a Golden Access Passport that allows U.S. residents with a permanent disability free entrance into all national parks. This must be applied for in person at a national park such as the Everglades National Park. One amazing place to camp is the beautiful Ochlockonee River State Park located on Florida’s
Ochlockonee River State Park’s Park Manager Kevin Patton says the Florida State parks are ready to meet the needs of special campers however they can.
northern gulf coast. Park Manager Kevin Patton says the Florida State parks are ready to meet the needs of special campers however they can. “The park rangers want to accommodate all people visiting the state parks to the best of their ability. If you have a need, just let us know and we will see how we can help,” Patton said. The Ochlockonee River State Park offers three accessible camp sites that include raised fire pits, non-swivel grills, raised water spigots, picnic tables, and cement walkways to a nearby accessible restroom facility. The parks
recreational amenities include a floating dock for easy access to boats or other water sports, fishing, hiking, bird watching, canoeing, and a nature trail. A drive on their enchanting nature trail allows you a rare glimpse of an unspoiled piece of Florida. Ochlockonee River State Park hosts a number of plants and animals that are either listed, threatened, or an endangered species. For those interested in plants, the park is home to a rare type of orchid called Eaton’s Ladies’—tresses and wiregrass gentian. Also, this is one of the few
Creating the Perfect Camp Out Three websites with practical and creative tips to help your family’s trip go off without a hitch. GOCAMPINGAMERICA.COM Scout out campsites, preview the latest equipment and accessories and get cool games and field guides for the kids. There’s even a mobile version you can take along with you.
CAMPSAFE.ORG Find safety tips on clothing, camping gear, animals and more. A special camping with children section identifies common concerns and provides kid-specific safety tips.
24 | OCTOBER/NOVEMBER 2010 Florida crossroads
FAMILYCAMPINGTIPS.COM Recomendations and instructions on tent camping, trailer camping and RVs, plus meal planning suggestions and sure-fire recipes for anyone tired of hot dogs.
places where you might catch a glimpse of the endangered redcockaded woodpecker, gopher tortoise, black bear or manatee. However, it is quite common to spot a white squirrel, deer, or a wide variety of birds and plants. Fishing is available for both fresh and saltwater species. Camping at Ochlockonee River State Park definitely provides a variety of activities that allows you to slow down, take a deep breath and just enjoy all that nature has to offer. Because it is so accessible, the Ochlockonee River State Park is the location of the outdoor day for SportsAbility, an event sponsored by the Florida Disabled Outdoors Association. Held each spring, SportsAbility is a program that gives people of all abilities the opportunity to, at no charge, try a wide variety of recreational activities from sit water skiing to horseback riding all designed to promote active leisure for life. The beauty of camping can really be found in the simplicity of letting things go, and just enjoying nature and the great outdoors. In a high-tech, comfort-driven world, the idea of “roughing it” might be a little intimidating. Sometimes, though, that is part of the fun. Donna Dickens is an avid camper, who also has a disability. She says she has never let that stand in the way of a good time. “There will be barriers when camping, whether you have a disability or not. Each campground is different and people usually bring too much stuff. Really, part of the fun is overcoming the trials and tribulations that come up. I love it,” Dickens said. So, pack up the kids and head out on a true adventure. Plan a trip today and don’t forget the marshmallows!
CAMPING GUIDELINES
A camping trip may be more relaxed than other types of vacations, but that doesn’t mean it should take less planning. To pull-off a great camp out, there a few guideline all campers should follow. Make a List Create a checklist of items so you won’t forget anything including essentials like food, tent, bedding, clothing, flashlights with extra batteries, toiletries, first aid kit, medication, sunscreen, and bug repellant. Don’t forget the fun stuff either, such as Frisbees, footballs, bubbles, lawn darts, and fishing poles. A shower chair or shower sheet (to cover the campground’s bench) is one item that is helpful when camping for people with physical disabilities. Take a tour If it is possible, visit the campground before camping to see first-hand the layout, accessibility, and how it will meet your needs. If you cannnot take a tour in person, call the specific campground and ask the rangers questions like: • Are there accessible campsites and/or cabins? • Are there unisex bathrooms (if assistance is needed)? • How far is the restroom from your campsite and is it accessible? • Do the showers have a shower bench or removable showerhead? • Does the shower have a lip that prevents wheelchair access? • Does the campsite have electricity, water, grill, and fire pit available? • What other accessible amenities are available such as a fishing pier, boat dock, canoes, trails, etc. Practice makes perfect Do a “trial run” in your backyard or driveway. This will help to avoid forgetting something important, like a hammer to pitch the tent. always Be prepared Consider taking a copy of your medical history, insurance information, doctor’s phone numbers, and the location of the nearest hospital and/or walk-in clinic—just in case. Take What You Need Don’t let a special need stop you from camping. Adaptive equipment, such as tents that are made especially for people who use wheelchairs, are available to make the trip accessible for everyone. The Florida Disabled Outdoors Association (info@fdoa.org or call (850) 201-2944) can help you find the special adaptive items and equipment you need. Check the weather forecast Keeping tabs on temperature and the possibility of bad weather will help you know what to pack and how to stay safe. Do a Tune-up Prepare your vehicle by checking all fluid levels, tire pressure, and making sure all service check-ups are up-to-date. If you are using an RV that has been stored, be sure to bring it home for a full safety-inspection and to make sure everything is running properly like generators, kitchen amenities, bathroom fixtures, etc.
FloridaCrossroadsOnline.com 25
BY MA R A K A P L A N
P
laying is one of the best ways kids learn. It helps them develop motor skills, encourages critical thinking, stimulates an imagination and so much more. For special kids, we sometimes have a tendency to make everything a therapy session and require play time to be two-fold: therapeutic and stimulating. It’s important to remember though that sometimes kids, disabled or not, need to be left alone and have a chance to just play. The right toys can help develop those same goals we have for our kids—with or without an adult’s direction. Keeping that in mind, we have created a list of 10 toys spanning different developmental levels and price ranges to give you some suggestions for your holiday shopping list. These toys can be found at a number of different sources: toy stores, department stores and online toy stores. We’ve given you a recommendation of where to start your search, but it never hurts to look around to find the best deal. Have fun and get out there and play!
These toy suggestions came from Mara Kaplan of Let Kids Play. Mara is an educator, an advocate for inclusive play, and a parent of a child with special needs. You can learn more about these toys, and many others by visiting the Let Kids Play blog, letkidsplay.blogspot.com. Each year starting in November, Mara recommends “50 Toys in 50 Days.” On her blog you can find the last two years of recommendations and then start following the 2010 picks. The toys are all geared for children with a variety of special needs, but do not necessarily come from special needs stores. 26 | OCTOBER/NOVEMBER 2010 Florida crossroads
gross motor ybike
This training bicycle helps children learn balance and steering. It has no pedals, no crankset and chain, and no training wheels. A balance bicycle is small enough that the rider can walk the bicycle while sitting comfortably in the saddle, putting both feet flat on the ground. With a balance bicycle, the rider learns to balance first and pedal last. They provide great sensory integration experiences by refining neurological processes and body awareness. Compared to other balance bikes, YBike’s design has the front wheel considerably further forward, giving it a bigger turning radius and reducing the risk of falling over the front when turning. The back wheel is also covered to stop children from riding over their feet. The YBIKE body is designed for better clearance of obstacles and the larger wheels produce a safer ride on uneven surfaces. (Ybikeusa.com; $69.95)
]
creativity ready2learn giant stampers Giant stampers enable children whose fine motor skills are not fully developed to be successful at art. The stamps have large grips, making them easier to hold and place on the paper. Each foam stamp is 3” in diameter and mounted on a clear see-through top and a directional arrow for easy placement. They work well for hand-over-hand work. The stamps come in many different combinations including the alphabet, insects, shapes, wild animals, and others. The stampers are very durable and can be used for children of varying ages and abilities: 12-year-olds can use them to decorate a science fair board while a 3-year-old is making pictures to hang on the refrigerator. Stamp pads are sold separately, but are also large so a child can be successful in placing the stamp on the pad. (CenterEnterprises.com; $8-$31)
social skills
GROSS MOTOr Saturnian 1 Fun Gripper Fireball Football
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In this age of video games and high technology, it is more important than ever that all children get outside to play and exercise. Often this is difficult for children with disabilities because they may not have the ability to run or grasp a ball. Fun Gripper balls are one solution. Through their unique design, Fun Gripper has made it easier to throw and catch—encouraging children to not be afraid or scared to try to catch. The soft exterior also won’t hurt a child’s hands. The balls are multi-colored and kids think they are fun and cool. People of all ages love these balls, that encourage inclusive play. ($15.99; sat1sport.com)
worry woos Andi Green’s series of books and plush animals are helping kids better understand their emotions. Green’s WorryWoo Monsters are a first-of-a-kind series where emotions come to life as lovable, quirky characters. Each story follows a WorryWoo through a whimsical journey to self-awareness as they confront their representative emotion. Created to build confidence, each WorryWoo story concludes with an uplifting message that provides the perfect opportunity for parents and teachers to openly discuss topics that don’t have easy answers. The children can meet Nola, the Monster of Loneliness; Rue, the Monster of Insecurity; Squeek, the Monster of Innocence and Fuddle, the Monster of Confusion. (WorryWoos.com; $36 for the set, monsters and books can be purchased separately.) FloridaCrossroadsOnline.com 27
pretend play
imagination green toys
sensory
rubbabu balls
Rubbabu Balls, are a unique sensory ball made from natural rubber foam and covered in a bright, colorful flocking. These uniquely shaped balls feature shapes and textures that make them perfect for small hands, and ideal for all types of play. Children can easily grip and catch these balls easier than traditional versions thanks to the clever shapes and the soft and squishy materials. They are the perfect toy for sensory exploration and will help children to improve gross motor skills and hand-eye coordination. Rubbabu balls are made entirely of 100% biodegradable, all-natural rubber. They are soft and squishy to the touch, yet sturdy enough to handle years of active play. (rubbabu.com; $34.95; vehicles range from $14.95-$24.95)
Children learn by imagining and doing. Before a child can learn to read, he must learn that an object can represent something else. But as many parents raising children with special needs know pretend play is not always as simple as it may seem. The process of pretending builds skills that are essential in some developmental areas like social and emotional skills, language skills and thinking skills. Green Toys, Inc. makes a line of classic children’s toys constructed from recycled plastic and other environmentally friendly materials. They have trucks, tea sets, a tool set and more. These toys are sturdy and can handle rough play. ($10-25; fatbraintoys.com)
]creativity music blocks
Many children love music, but not everyone has the ability to play an instrument. With Music Blocks a child can create over a million different musical compositions simply by playing with blocks! Magnets hold the blocks securely in place., but can still be easily pushed out. In addition to music, the Music Blocks teach color and shape recognition, cause and effect and critical thinking skills. It plays 3 diferent tunes including: Mozart’s Night Music, Jumpin’ Jazz, and African Rhythms. For parents, there is a highlow volume control. This toy also secures easily to a wheelchair tray using Velcro. (smallworldtoys.com; $60.99)
] problem solving i can do that! games
Games teach children a variety of skills including how to be cooperative, strategic, competitive, confident, bold, risky, respectful, and a thousand other critical life lessons. But none of that matters if the child does not have fun while playing. Most children are not ready to understand games until they are developmentally four or five years old. I Can Do That! Games are wonderful because they do not require the child just to sit and stay still—there is movement involved. The games incorporate characters that children already love like Dr. Seuss, Curious George, and Richard Scarry. These games also make it easy to alter the rules so that everyone playing can play at their own developmental level. (ToysRUs.com; $19.99) 28 | OCTOBER/NOVEMBER 2010 Florida crossroads
fine motor fisher-price little superstar jammin’ band piano
It is often difficult to find a toy for a child who is profoundly disabled, but the Jammin’ Band Piano is a toy that is easy for a child with limited hand control to hit and get a response. It has large, colorful light up keys that reward the child as they play with it. As a child plays they will activate one of three characterized instruments on top of the piano that dance and spring to life. The child can also bat at each instrument for immediate feedback. The song features the three different voices of the instruments on top of the piano. This is another toy that is easy to Velcro to the top of a wheelchair tray. (amazon.com; $27.99)
fine MOTOr
My soft world
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Blocks and construction toys promote a high level of learning across ages and abilities. Blocks teach everything from math, to literacy, to knowing where your body is in space. There are many different construction sets available and you should explore what will work best for your child’s strengths. My Soft World City by Edushape has 29-pieces that feature wood-like blocks made from soft foam. The foam makes it easier for children to grasp and put in place. The set includes buses, cars, stoplights and more, which will spark your child’s imagination and lead to good story starters. The blocks are also lead free. ($19.95; edushape.com)
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What’s Up? a-maze-ing
Panhandle
October 2010
beyond just buckled Oct. 26, 2010 • 6pm - 7:30pm St. Marks UMC, Crestview Do you have questions about your child’s car seat? Get them answered at this seminar presented by Kim Cooper, National Certified Passenger Safety Technician and President of Beyond Just Buckled. For info call Irma at (850) 416-6789.
November 2010
fall maze Oct. 9 - Nov. 7, 10am - 4pm • Sweetfields Farm, Masaryktown A 5 acre fall maze that is a life-sized living labyrinth . You enter at a starting point and navigate your way through the maze. Check points are set out along your journey to assist in a successful completion. Check points are areas in the maze containing questions or clues that will point you in the right direction. Don’t worry if you make a wrong turn, it’s all part of the fun. (352) 279-0977 or sweetfieldsfarm.com scott’s fall corn maze Oct. 2 - Nov. 28, 6:30pm - 9pm • Zellwood Want a place to take the family, go with friends, Church groups, Scouts or educational groups? Scott’s Maze Adventures offers a unique and fun time in the country! Central Florida’s only Maze Adventure Park located just 30 miles northwest of Orlando. Attractions include a six acre Corn Maze, half-acre Mini Corn Maze, Mist Maze, Labyrinth, 60 foot Super Slide, picnic and play area. Journey through seven acres of live field corn with miles of paths where you will find pictures, clues and games to make learning FUN! longandscottfarms.com
30 | OCTOBER/NOVEMBER 2010 Florida crossroads
ESCAMBIA/SANTA ROSA PLAYGROUPS Nov. 19, 2010 • 9:30am - 11am Pearl Nelson Center, Pensacola Social and developmental activities to enhance your child’s development. Developmental specialists facilitate this group. Call (850) 416-6789 to RSVP.
northeast
October 2010
Early steps fall festival Oct. 24, 2010 • 12:30pm - 2pm Losco Regional Park, Jacksonville A fun day for families to relax, play games and enjoy each other while also receiving information about community resources. Contact Kimberly Belzer at (904) 360-7022 ext 351 for more information.
Corn Maze: ©Rich Koele/Dreamstime ; Opposite Page: ©Danielle O’mahony/Dreamstime
fall family fun on the farm Oct. 8 - Nov. 7 • Coon Hollo Corn Maze, Micanopy Family owned farm featuring an interactive Corn Maze, hayride, farm train, pedal cart races, hay fort/corn cribs/buckin’ barrels/tire swing, farmyard obstacle course, antique farm equipment, agricultural educational displays. If you plan on an evening visit, bring your own flashlight and bug spray! (352) 591-0441 or coonhollocornmaze.com
potty training workshop Nov. 4, 2010 • 6pm - 7pm Pearl Nelson Center, Pensacola Presented by Infant Toddler Developmental Specialist Elaine Shamloo, BA this workshop covers the signs of readiness, overcoming difficulties, and instructions for success. Call Irma at (850) 416-6789.
weathering the five life stages of special needs planning Nov. 7, 2010 • 1pm - 5pm Doubletree Hotel Palm Beach Gardens An educational symposium for parents and guardians of special needs individuals of all ages. Registration fee ($99) includes one hour confidential attorney consultation. RSVP with Elizabeth Wolfe at (561) 721-0600 or liz@ mitchellkitroser.com.
halloween horse show Oct. 23 • Sand & Spurs Equestrian Park, Pompano Beach The City of Pompano Beach and the Bit-by-Bit Therapeutic Riding Center present the second annual Halloween Horse Show. Watch Bit-by-Bit’s special kids show off their riding skills. (954) 786-4507 or bitbybittherapy.org.
south
October 2010
November 2010
S.T.E.P.S. for success Oct. 16, 2010 • 10am - 2pm Jackson High School, Miami Free conference for students with disabilities and their parents. Get prepared for the teenage years and life after high school. Breakfast and lunch provided. Call (305) 9693900 for information or questions. Autismsocietymiami.org
annual miracle walk 2010 Nov. 7, 2010 • 9 am Ponce Circle Park, Coral Gables The Miracle Walk is an event of the Down Syndrome Association of Miami to raise money for its mission to provide support and services to parents and individuals with Down syndrome. To register, go online to dsaom.org.
Donate new pajamas or a new book to help the Pajama Program. Drop off your donation at any of our 12 Florida locations, starting Nov.1st.
To find a location near you, please visit: AfterHoursPediatrics.com
southwest
October 2010
Avery adkins fundraiser Oct. 17, 2010 • 1pm Castaways, Ft. Myers Beach Live Bands starting at 1pm featuring Smokin’ Bill with Meagan Rose and Deb and the Dynamics. Texas Hold ‘Em Tournament starts at 6pm. 50/50 Raffle & Prize going on throughout the afternoon and night.
west
October 2010 sma walk-n-roll Oct. 23, 2010 Ft. DeSoto Park, Tierra Verda Help us develop a treatment and cure for Spinal Muscular Atrophy. Please join the FSMA of Greater Florida Chapter at his year’s event at Ft. DeSoto Park on the Gulf of Mexico. We plan to have lots of wonderful food, entertainment and fun! fsma.org. FloridaCrossroadsOnline.com 31
SOUTH FLORIDA
CENTRAL
October 2010
October 2010
November 2010
apraxia walk Oct. 23, 2010, 12pm Carillon Park, St. Petersburg Every child that struggles with Apraxia of Speech deserves their day of recognition and with your help we can make the very first Florida Walk for Children with Apraxia happen. With your help we can raise money for Apraxia research, promote Apraxia awareness and give each one of these children their own special voice. Call Brenae Solis, Walk Coordinator at (727) 457-6924 for more information.
step up for downs Oct. 16, 2010 • 8am - 12pm Lake Eola Park, Orlando Come rain or shine the Step up For Downs Syndrome Walk will be held at Lake Eola Park in downtown Orlando. Free food, entertainment, local celebrities, games and activities and a 1-mile walk around the park. Contact the Down Syndrome Association of Central Florida at (407) 478-5621.
autism clinic Nov. 5, 2010 • 8:30am - 12:30pm The Developmental Center for Infants & Children, Orlando Special opportunities for families to talk with professionals, learn about resources and obtain information. Space is limited. Contact Elizabeth Przybilla at (407) 317-7430 ext. 2168 to schedule an appointment.
fnd’s 25th anniversary day in the park Oct. 30, 2010, 10am - 2pm MacFarlane Park, Tampa Come join us in celebrating Family Network on Disabilities’ 25th Anniversary with a fun day at the park! We’ll have information for families, kids activities, snacks, games and more! Event will take place at Shelter #405, near Freedom Playground, Tampa’s first universally accessible playground. For more information contact the Family Network on Disabilities at (800) 825-5736 or fnd@fndusa.org.
November 2010 HYRDOCephalus walk Nov. 6, 2010, 9am - 1pm Largo Central Park, Largo HUGS of Florida is a group of families brought together by Hydrocephalus with an understanding of how important gathering can be to help and give each other support. For more information about the walk, call (727) 767-6705 or go to gothydro.org
Brevard county’s 8th annual advocacy walk Oct. 23, 2010 Cocoa Village Riverfront Park Families Exploring Down Syndrome of Brevard invites you to the one mile course along the river. Bring the whole family for a fun-filled morning of fresh air, beautiful scenery, entertainment, food, face painting, and clowns. Register yourself and your friends to join the Step Up for Down Syndrome walk 2010. Visit fedsofbrevard.org for info.
strategies for strengthening families workshop Nov. 18, 2010 • 6:30pm - 8:30pm UCP Holloway Center, Orlando Ellie Hauser, Licensed Mental Health Counselor, will provide information about how having a child with special needs impacts every member of the family. Strategies for strengthening families will be shared. For more information, or to RSVP, contact Rose Mary Lumm at Rose.lumm@orlandohealth.com or (407) 317-7430 ext. 2201.
Developmental Pediatric Therapy Clinic Physical & Occupational Therapy (407) 774-6421 • Altamonte Springs, Florida Providing quality treatment for children with Gross/Fine Motor Delay, Cerebral Palsy, Down Syndrome, Autism/Spectrum Disorders, SI Dysfunction, ADD, ADHD and Orthopedic Disorders
Therapist Certifications Sensory Integration (SI) Samonas Sound Therapy Therapeutic Listening Program Neurodevelopmental Treatment (NDT)
What’s Up In Your Area? Send your upcoming events, support group meetings, and other happenings to editorial@FloridaCrossroadsOnline!
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Opposite Page: ©Pavel Losevsky/Dreamstime
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TRANSITIONS + GROWING UP
Steps to Guardianship Preparing for guardianship of your special needs child should begin now. BY M itchell I . K itroser , E S Q.
DOES YOUR CHILD HAVE TESTIMENTARY CAPACITY? When a child is a minor, the law gives parents the authority to act for that child as their legal guardian. When a child reaches age 18, this parental power disappears. For those families with special needs children, this loss of the ability to advocate for your child can be harmful to your child. The first step in maintaining the ability to protect your child is to determine his or her mental capacity with respect to a legal concept called “capacity”. If your child has the ability to understand the nature of the documents that must be signed in order to give you the ability to help her, a HIPAA WAIVER, HEALTH CARE SURROGATE & POWER OF ATTORNEY can be used to address your child’s future medical emergencies and also to provide continuing authority over financial issues that may be overwhelming for your child. STEP
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HIPAA: The Health Insurance Portability and Accountability Act of 1996 was created to protect our privacy. It is also the reason why we sign waivers everytime we go to our doctor’s office, so they can let our insurance companies know what procedures were performed as part of the billing process. In short, without a waiver, our medical records are private and all medical information about us must be kept confidential. For parents of adult children with special needs, a HIPAA WAIVER provides a parent (and anyone else designated on the waiver) with access to health care information about the child. Powers of Attorney: These documents provide a variety of powers that one individual can assign to another, including the power to handle finances, the power to file for government benefits, to create trusts and even to file lawsuits. Powers of Attorney can be specific to one action or general and can be made “durable”, meaning that they continue to be effective
even after a person becomes completely disabled. Health Care Surrogate Appointment: What the Power of Attorney does for financial matters, the appointment of a health care surrogate does for medical matters. This document appoints someone (a surrogate) to make medical decisions for the person creating the document (the grantor) when the grantor is not able to make medical decisions for themselves. It enables the surrogate to authorize surgery, transfer the grantor from one hospital to another, hire and fire doctors and make all other medical decisions as they are needed. IFSTEP
MY CHILD DOES NOT HAVE TESTIMENTARY CAPACITY, THEN WHAT? If your child is unable to understand the nature of the legal documents, then he cannot legally sign them. They would not be effective anyway. Under these circumstances, the law provides for protections under statue, starting with Guardian Advocacy.
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For children with developmental disabilities, this statute allows a parent to continue his or her role as advocate for their child past adulthood. It is a Court proceeding, with a Judge ultimately determining what power and authority a parent will be given to act on behalf of their child, usually in financial and medical matters. It is less restrictive than guardianship and is, therefore, less expensive to create and to effectuate. MAXIMIZE THE VALUE OF YOUR CHILD’S INCOME OR ASSETS Children with special needs frequently receive disability benefits or personal injury settlement funds. There may be annuity payments or Medicaid benefits forthcoming. In some situations, maintaining excess assets in a child’s name can result in diminution of government benefits. Supplemental Needs Trusts or Pooled Trusts can be created and used to protect and manage money for your child. This type of planning can enhance their government benefits and improve your child’s quality of life. STEP
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START THINKING ABOUT THE FUTURE EARLY Long term financial planning is best done when parents are young, to minimize the financial burden and spread it out over many years. Parents should consider using life insurance policies as a tool to fund the benefits their children will need after they are gone. The proceeds can be payable directly into a Supplemental Needs Trust or Pooled Trust and be there for the child when the parents have passed away. Don’t forget to talk with relatives who may be considering making bequests to your child so those gifts do not interfere with any disability benefits the child may be receiving. STEP
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PASSING THE TORCH Parents have to prepare for STEP and designate a successor to themselves. After all, it is natural to expect that our children will outlive us. Some families are fortunate enough to have another child or a cousin, niece or nephew who is willing to step in and take over for a parent when the parent can no longer care for the child with special needs. The advantage is a continuity of family and a familiarity with the child’s needs and situation. The disadvantages are the burden on the new caregiver, who may have their own life issues as well as the need for additional back-up planning if the new caregiver becomes unable to continue in their role. Agencies offer both advantages and disadvantages over family members. Agencies provide greater levels of support and financial reliability while sacrificing the familial touch. Eliminated, or at least minimized, are the concerns about financial irresponsibility, death or illness of a caregiver, and lack of expertise. Costs are a consideration, so investments are a critical component of any good plan. Don’t forget that the day will come when the role of caregiver must be transferred to a successor. Consider the strategy of making the transfer when you can supervise the transition and still be available to fix any problems that may come up. Things can and will go wrong. Be proactive and see that your plan works before you are unable to readjust your goals for your child.
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Mitchell I. Kitroser focuses his practice on matters pertaining to special needs planning, elder law, probate, trusts, wills, guardianships and real estate.
Crossroads Connection Is caring for your child more than you can manage? We provide private pediatric home care services designed to provide peace of mind for you and your family.
407-788-9393 www.PartnersInHC.com Seminole, Orange & Osceola Counties
Sitter - Homemaker CNA - LPN - RN Care Manager
Great book for parents, teachers, therapists or family members. Find out how this mother saw the blessings in autism. Read many more testimonials from other families, people who have autism, teachers, parents, grandparents and educators about how they feel autism has been a blessing to them. After you read this book you may understand more clearly what a family goes through once they hear, “Your child has autism.”
Order Your Copy Today! www.AUTISMBLESSING.com
401 S. Volusia Ave. Orange City, FL 32763 Phone: 386.775.3181 Fax: 386.775.0032
Nintendo DS Cases & Weighted Blankets Nintendo DS Cases: Blankets: Holds a Nintendo DS, DSi, or Travel size with up DSi XL and 4 games...$20 to 5lbs in weight...$60. Personalize with up Twin size with up to 15lbs in to 8 letters...$25 weight... $90 plus $3 per lb Plus shipping. of weight. Plus shipping. To order, email bzmommie@bellsouth.net
Specializing in affordable communications projects and graphic design for non-profits and associations. NEWSLETTERS • BROCHURES • POSTCARDS • EVENT MARKETING • LOGO DESIGN • STATIONARY 407.494.0619
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
Crossroads Connection is a listing of products, services and resources of benefit to special needs families. If you are interested in advertising in Crossroads Connection, please visit our website at FloridaCrossroadsOnline.com (and click on advertising), email us at advertising@FloridaCrossroadsOnline.com or call us at (407) 494-0619. NEED COPIES FOR YOUR GROUP? We can provide multiple copies to your group/organization or to distribute at your upcoming event. Send us an email at info@FloridaCrossroadsOnline.com or give us a call at (407) 494-0619 to set up your group subscription.
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36 | OCTOBER/NOVEMBER 2010 Florida crossroads