florida crossroads june/july 2010

FloridaCrossroadsOnline.com �

JUNE/JULY 20�0

Anyone Can LearnPLUS: Basic Tips Every Parent Should Know

Dive In ToTherapyIn The Pool

INFORMATION + INSPIRATION + INCLUSION

FloridaCrossroadsOnline.com

How AccessibleAre They?

Freedomfound for all

parents!

2 | June/July 2010 Florida crossroads

At Arnold Palmer Hospital for Children, we have a 20 year 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. We are on a constant mission to improve our specialized service offerings. We’ve made it a habit to always have the latest state-of-the-art medical technologies. And 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.

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

10ORA077


June/July 20�0

16Ready, Set, SwimAll kids can learn to stay cool in the pool, thanks to adaptive strategies. We’ll tell you what it is all about and how to get started.

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ON THE COVER �8 Survival of the Mickiest A guide to help your family’s next trip to Walt

Disney World be as accessible as possible.

27 A Parent’s Bill of Rights encouragement for caregivers that will keep

you going, from a mom who knows.

29 How it Works Maybe aquatic-based therapy is a cool choice

this summer. Dive in to find out how it works.

�� Summer School Discover ways to get yourself organized and

prepared this summer before school starts in the fall.

Travis TaylorAge: 5

Hometown: Sanford, FL

Travis was a 23-week preemie who has cerebral palsy. He loves trains, trucks and anything with wheels. Travis’s fighting spirit and determination make him unstoppable and an inspiration to his family and friends. This photo was taken at one of his favorite places, his grandparent’s back yard.

Photographed by:Mike and Carol Gibson, Versatile Photography


JUNE/JULY 20�0

Anyone Can LearnPLUS: Basic Tips Every Parent Should Know

Dive In ToTherapyIn The Pool


FloridaCrossroadsOnline.com

How AccessibleAre They?

Freedomfound for all

parents!

Nominate your child for Cover Story at FloridaCrossroadsOnline.com

COVER STORY

� | June/July 2010 Florida crossroads

FEATURE 22 Independence for All

Therapist tips for tackling daily life skills.

FROM THE ROAD 5 editor’s letter

6 Crossroads Online

6 Happy Faces

MIX ‘N MATCH 7 Back to the Beach Sun-

proof suggestions to make your day a lot of fun.

8 Mixed Bag Toes, Shoulders, Knees and Head? Special Delivery: Happy Mail for Sick Kids;

Speak up, Autism Speaks celebrates five years

REAL TALK 9 Got Insurance? even

if you do, it might not be enough. use these resources to cover the gaps.

�0 Talk Topics Time For a Claims Checkup

Are you Prepared for Hurricane Season?

�� Who’s in Control Don’t let your child’s disability run your life. Set up some boundaries.

DOWN THE ROAD �5 Inclusive Advocacy Why

we need to work together to accomplish our goals.

June/July 20�0

22Spread your wings and fly!

27Find freedom in a Parent’s Bill of Rights

FloridaCrossroadsOnline.com 5

Five years ago, I was blessed with a beautiful child. He

was extremely premature, at 23 weeks, and at 1 lb, 3 oz weighed about the same as a basketball. The moment he was born I was not only thrust into a new role as parent, but also into a new world I never knew existed. When your child has a disability, life changes in some really big ways. you schedule your days around therapy sessions and doctor’s appointments. you stay up late scouring the internet for information and advice. you make your child’s development your top priority and work tirelessly to give them any and every opportunity that comes along. My vision for Florida Crossroads is to provide special needs families a place to go where they feel accepted, affirmed and appreciated. Whether it is by reading the magazine in print or online, or joining the discussion at Crossroads Community, families will feel connected and understood. At the same time, Florida Crossroads will be educating our partners in the corporate community, medical profession, government agencies and others about what life is like for our families and encouraging them to find ways to offer support and inclusion. As we say, imagine a place where...

From the Road eDITOR’S leTTeR

Emily, me,

Sean and

Travis

Welcome to the Crossroads!

CROSSROADS CONTRIBUTORS

Christy TaylorEditor

Mike ellenburgManaging Editor

Alisha enrightSocial Media Director

Bill RodriguezWeb Master

Mission StatementThe 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.

7025 CR 46A, Suite 1071, #521lake Mary, Fl 32746-4753

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.

For advertising inFormation:407.494.0619

[email protected]

Pam Lindemann (Summer School, p. 11) is a parent advocate and trainer helping parents across the country whose children are struggling in the public school system. Visit her website at www.TheIEPadvocate.com.

Jacqulynn Williams (Who’s In Control, p. 13) is an execeptional education teacher with a BA in Specific Learning Disabilities/Varying Exceptionalities and a ME in Curriculum and Instruction.

Ellen Seidman (Parent’s Bill of Rights, p. 27) is a mom of two and a writer, editor and consultant. She writes a blog about kids with special needs (and the parents who adore them) at lovethatmax.blogspot.com.

Jeannie Forthuber (Inclusive Advocacy, p. 35) is an experienced mom of two who has been advocating for her son for 22 years. She is a NARHA certified therapeutic riding instructor and consultant with LEAD change.

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Blog All About It!We want to hear your stories from the road. Join us in the Community at FloridaCrossroadsOnline.com to start your blog and follow friends.


Colby, � yearsWilliston, FL

Logan, � yearsCasselberry, FL

Violet, 5 yearsCasselberry, FL

Show us your stuff. Go to Happy Faces @ FloridaCrossroadsOnline.com

HAPPy FACES check out the smiles on these little cuties.

READER POLLAre you planning a summer vacation?

50%YES

50%NO

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Join in the fun and take our reader poll at FloridaCrossroadsOnline.com

ATTENTION DADS!

In honor of Father’s Day, we want to give a shout-out to our dads. Join us at FloridaCrossroadsOnline.com in June for a special dad’s day celebration. Become a member of the SuperDads group in the Crossroads Community and share your ideas about recreation, resources and relating to your child. For wives, kids and grandkids nominate your dad for our SuperDad contest. We want to hear why your dad is the greatest. Share your stories at floridacrossroadsonline.com or on our Facebook page. One special dad will be featured as our SuperDad in the next issue of Florida Crossroads.

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


BACK TO THE BEACH!Break out the sunscreen, summer is here. Here are some ways to make sure your trip is a day at the beach.

BEST DAY EVER

Best Day Foundation helps kids with special needs enjoy beach activities like surfing,

bodyboarding and kayaking by organizing safe, fun events with volunteers from the community.

Check out bestdayfoundation.com to learn how to start a chapter in your area.

SET IT UPSensory kids can

prepare for the trip with Now I Get It:The Beach & The Playground, a social

story from natural learning Concepts

(nlconcepts.com).

DIG THIS!

A sand play set made from recycled milk jugs?

Get the scoop on eco-friendly toys at

chinaberry.com.

THE RIGHT TOOLS

you can’t take a trip to the beach without building a

sandcastle. Sculpt like a pro by using a popsicle stick to smoothly shape large areas and carve out

turrets and towers and a toothpick for more precise, detailed decorations. Adorn with

sea shells and it’sfit for a king.

TRENDS + TIPS + TOOLS



SEND SOME LOVE: Pass it on at hugsandhope.com

Autism Speaks, the world’s largest autism science and advocacy

organization, is celebrating its fifth anniversary this year. Founded in 2005 by Suzanne and Bob Wright, the organization is dedicated to

funding research into the causes,

prevention, treatments and awareness of autism spectrum disorders. The Centers for Disease Control reports autism is now diagnosed in 1 in every 110 American children. learn more by

going online to autismspeaks.org.

Speak Up

Try a new twist on an old favorite. Print out pictures of each of the body parts in the preschool standard

“Head, Shoulders, Knees and Toes” and place them in the order of the song, pointing to each card as that

part is sung. Then, mix the cards up and sing a new order, pointing to the cards as you go along. It’s a great

activity for children who have difficulty taking things out of order, as well as reinforcing body awareness. Go

to FloridaCrossroadsOnline.com to download card templates and start singing.

(Source: Pamela Ott, MT-BC, NMT; musicforspecialkids.blogspot.com)

Toes, Shoulders, Knees and Head?

Special Delivery:Happy Mail for Sick Kids

Mix & Match

July is national Make a Difference to Children month. One way to share a smile is by sending happy mail to kids who are fighting for their lives. Send a card, or put your child on the mailing list. Check it out at hugsandhope.org

SING AND READ BOOKS: $10.95; musicspeakspub.com

ALL ABOARDyour kids won’t be able to resist a sing-a-long train ride to Grandma’s house in this

book and CD from Music Speaks Publishing, also by Pamela Ott.

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WHEN INSURANCE IS NOT ENOUgH

A recent report from the National Survey of Children with Special Health Care Needs says that special needs kids are as a whole, underinsured. Nearly a third of the 40,000 families surveyed said they lack adequate insurance to meet the special medical needs of their child. If you are struggling to fill in the gaps, check out these resources

FLORIDA KID CARE Health insurance for kids, birth to 18, who do not have insurance. eligibility is based on income and family size. Call 888.540.5437 or online at floridakidcare.org

CHILDREN’S MEDICAL SERVICES NETWORK Provides medical, therapeutic and supportive services for children with special healthcare needs. The statewide network includes over 5,000 doctors, hospitals, university medical centers and other healthcare providers. Call the central office at 850.245.4200 or find your local office online at cms-kids.com

UNITED HEALTHCARE FOUNDATION Families can apply for grants from the unitedHealthcare Children’s Foundation, a non-profit charity funded by contributions from unitedHealth Group. If awarded, the grant can provide assistance toward the cost of medical care and services. Go to uhccf.org to learn more and apply.

EDUCATION + ADVOCACY + ISSUES

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�0 | June/July 2010 Florida crossroads

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Real Talk

Are you Prepared?

Hurricane season is here, and it is important to get ready. Make plans using these tips from theFlorida Division of emergency Management: FloridaDisaster.org.

1Get A Plan! It is extremely important to know what you will do before the emergency happens. Go online to FloridaDisaster.org to create a personalized family disaster plan.

2Special Needs Registry. Signing up for the Special needs Registry in your county helps identify individuals with disabilities who may need assistance during an emergency. Go to FloridaDisaster.org,

click on Disability Disaster Information and Special needs Sheltering to find information for your county.

3Pack a Kit for the Kids. everyone knows the basics of a Hurricane Survival Kit, like food, water and batteries, but don’t forget to pack a separate kit for your kids. living through a natural disaster can be

extremely scary for a child, so make sure you include a few things that might help them feel comfortable, such as crayons and paper, books and a “keep safe” box filled with things that make them feel special.

Don’t Forget the reFill!If your child has a medicine they need daily, make sure you have it in your Disaster Survival Kit. The “Emergency Prescription Refill Law” allows you to get a 30-day supply of the medication, even if it has just been refilled, if your county meets one of these criteria:• Is under a hurricane warning issued by the National Weather Service.• Is under a state of emergency executive order from the Governor.• Has activated its emergency operations center or management plan.Under these specific circumstances, insurance companies and others licensed by the Office of Insurance Regulation are required to waive the “refill too soon” restrictions on prescriptions.

TIME FOR A CHECKUPlooking to make the most of your medical insurance coverage?

Read your policy! If you have any questions about coverage, call your insurer and ask them to clarify exactly what is covered, under what conditions and at what rate.

Make a Friend. Request a case manager be assigned to you if your child has ongoing medical or therapy services. Working with the same people can provide continuity of services.

Keep It Personal. Include a photograph of your child when you submit a claim or begin your relationship with a case manager. Photos can personalize a case file, which might earn “special treatment” when trying to resolve

problems in the future.

Copy That. Document everything, from phone calls to faxes,

and include dates. Send all correspondence by

certified mail so you have a return receipt for documents

you send. Call the insurer if you don’t get a timelyacknowledgment of your

correspondence. Keep copies of everything.

Get more medical and financial advice at the Metlife Center for Special needs PlanningSM @ metlife.com.

Check out Floridacrossroadsonline.com for resources and information about these and other Real Talk issues.

FloridaCrossroadsOnline.com ��

1Find Your copyDig it out of the pile or pull it

out of the drawer. It’s really hard to hold the school accountable for your child’s educational goals when you yourself don’t know what they are!

2give one to the teacherMake a copy of the IeP for the teacher and give

it to her at open house. Don’t assume the teacher has been given a copy or that they have read it.

Don’t wait until the first day, get prepared now for next year. Take a look at these 10 must-do’s for a great year.

By PAM l InDeMAn

SummerSchool

Real Talk: ADVOCACy

Backpack? Check.School supplies? Check.IeP? Check, wait...what?

Between the back to school shopping and trips to the beach you might want to think about taking care of a few things that will help your child’s school year run smoothly. The key to success is always planning. A little effort now may pay off in better organization when school starts this fall.

3communicate by emailGet the email addresses of all your child’s teachers,

therapists and the school administrators. Send them an email the first week of school letting them know you welcome back and forth communication and let them know the best way to reach you.


8mark Your calendar

On your calendar at home, mark down the end of the quarterly grading periods and make yourself a reminder to schedule an IeP review meeting at that time. you can have an IeP meeting as often as you feel necessary to discuss your child’s progress.

9Join the sac committee

Join your school’s SAC committee. Somewhat similar to the regular PTA, the SAC committee deals specifically with special education issues in each school and they can also have input on how to spend school dollars for special education. Talk to your school principal.

10educate Yourself

Seek out and attend workshops and seminars – even if they’re online – about your rights under the Individuals with Disabilities education Act (IDeA). The only way you will know your child is receiving all the services and help he has the right to have, is if you have a greater understanding of the law that gives you so much power.

What is a School Advisory Council? The School Advisory Council (SAC) is a team of people representing various segments of the community–parents, teachers, students, administrators, support staff, business/industry people and other interested community members. The purpose of a SAC is to assist in the preparation and evaluation (developing and evaluating) of the results of the school improvement plan and to assist the principal with the annual school budget. each school in the State of Florida must have a SAC. By law, each SAC must be composed of the principal and an “appropriately balanced” number of “stakeholders.” These individuals must be representative of the ethnic, racial and economic makeup of the community served by the school. The majority of SAC members (over 50 percent) must not be employed by the school on whose SAC they serve. Council members are elected by their respective peer groups at the school in a fair and equitable manner as follows: Teachers shall be elected by teachers; education support employees shall be elected by education support employees; students shall be elected by students; parents shall be elected by parents.

For more information on SAC Committees, and the Florida law that governs them, go to florida-family.net/SAC

4schedule an ieP meeting

Make an appointment during the first two or three weeks of school to meet with your child’s IeP team. During this meeting review the goals of the IeP and express your expectations for the upcoming year.

5make an introduction

Create a one page summary listing your child’s strengths and weaknesses, their likes and dislikes, and tips on how to communicate with them. Any help you can give the teacher and therapists about how to work with your child will help them, and your child, by shortening the “getting to know you” period so more substantial progress can be made more quickly.

6say thank YouSend a thank you note to

every participant after the IeP meeting. The mileage you can get out of such a simple display of genuine appreciation is amazing.

7review the cum Folder

Make an appointment to go through your child’s cum (pronounced “cume”) folder at school. This is the official file of your child’s school records and other documents. Make sure you have a copy of everything that is in the file.

Real Talk: ADVOCACy

try to meet with the ieP team during the first two weeks of school to review goals and express expectations for the upcoming year.

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Do you ever feel like your child’s disability controls your life? ever feel guilty because you get frustrated when your world revolves around your child’s accommodations? ever wonder if you are meeting your child’s needs or giving them too much control? Here are three major areas where parents struggle to know when to accommodate and when to draw the line and lay down the rules. Remember, though, every child and disability are different so use these guidelines as just that, a guide.

Routine Most children benefit from a routine, but children with disabilities need structure even more. It helps them to function and feel comfortable. Setting up a routine for every part of the day is not overkill, it’s essential. Having a morning routine, going to school routine, homework routine, night routine, and bedtime routine help your child stay happier and calmer and more relaxed, confidently moving through the day. But what happens when you need to interrupt the schedule such as when family members want to visit or you want to take a family vacation? Should you just accept that these things cannot be done because your child needs a daily routine? no! There are some things that should not be changed. you should always try to keep mealtime and sleep schedules consistent no matter where you are or what you are doing. your child depends on you to know what is best and to give him what he needs when he needs it. Hunger and exhaustion only magnify behavior and emotional tendencies.

When it comes to discipline, who takes the lead: you, your child or the disability? We’ll tell you ways you can restore order without stressing out.

By J A Cq u ly n n W I l l I A M S

Who’s In Control?Real Talk: BeHAVIOR

�� | June/July 2010 Florida crossroads

you. To help him explain, try showing him pictures of things that the food reminds him of. Coconut may feel like sandpaper in the mouth or spaghetti like worms. understanding what that food feels, tastes or smells like to your child will help you understand her likes and dislikes, and you will be able to rule out future foods. you may also find new ways to present a new food or texture in a safe, sensory-friendly approach. For example, a child may refuse to eat carrots that are sliced but enjoys them mashed up like potatoes. Try this process as well: see it,

smell it, touch it, kiss it, taste it. Introducing the food to each sense one-by-one is less overwhelming then all at once and can help your child process the information easier. you may consider encouraging your child to talk about what he sees, smells and touches. The rough texture of a chicken nugget may be bumpy and a slice of a cucumber may smell like grass.

Homework. If homework is a long battle every night and is making your life miserable then try these tips. Talk to the teacher about strategies used in class. If your child is doing subtraction and the teacher has a visual chart in the classroom with numbers 1-100 or allows the child to use counters, you are expecting too much to ask him to do it on his own without any aides. Having the same strategies and accommodations at school and at home will give the child consistency in the learning process and make the transition from school to homework much easier. Realize too, that your child needs a break before jumping right into homework. let them go play for 15 minutes before tackling homework. Sometimes activities like bear-walking and obstacle courses provide enough proprioceptive input that your child will be more focused and attentive to the task. Also make sure they have a snack and water; dehydration leads to feeling fatigued and no one wants to work when they are tired. What if you try all this and it is still a battle? Alternate 15 minutes of play and 15 minutes of work

If your traveling, make sure to have those “special things” that will help your child adjust to new surroundings. your child’s favorite blanket that they sleep with every night, is just as important as her vitamins! The “special things” need to go with you, like medicine or adaptive equipment. even if you are on vacation, you should also keep special family bonding times that are part of your routine. If you have family game night every Wednesday or pizza night on Fridays, don’t stop them just because you are not at home. It may not be what you think vacation should look like, but your child may cherish those moments and feel punished if you take them away, which may result in a negative attitude.

Mealtime. As we said before, no matter where you are or what you are doing try to have breakfast, lunch, dinner, and snack at the same time. not only will your child understand when it is time to eat, his body will not have to adjust to a new routine. Some children cannot communicate hunger, or realize they are hungry, and display negative behaviors. When his body is adjusted to a schedule, the opportunities for these type of behaviors are limited. What if your child only wants to eat one thing? you can certainly keep trying to get her to try new things, but keeping her happy by serving her favorite meal right before a family picture does not make you a doormat. If your child only wants peanut butter and jelly for lunch, is that a battle really worth fighting? School can be a high anxiety place for your child, so giving a little comfort by packing the same lunch every day is not a bad thing. If your child refuses to try new foods, or eat what you have prepared, try to understand why. There may be legitimate sensory reasons such as texture or smell. If you dislike yogurt because the texture is too thick and the after taste is chalky, maybe your child feels the same way but does not know how to tell

Real Talk: BeHAVIOR

A picky eater may not just be picky. Use a sensory

approach with new foods.

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until the homework is finished. If frustration is building, and your child needs an outlet to be angry or yell, lead the child to a timer. Set the rules that when the timer goes off it is time to get back to work.

Independence. even though you might be tempted to complete tasks, like homework, for your child, it is not a good idea. your job as a parent is to encourage independence. Think about how many little things you do for your child because it gets finished quickly and correctly. How many times have you packed the lunchbox in the backpack because you asked three times and it did not get done? How many times have you buttoned pants or tied shoes because the child cries that he can’t do it or takes too long to try? There is an education term called “learned helplessness.” learned helplessness is when the child truly believes he cannot do things because he has never been taught that he can. Certainly your day may go quicker and easier if you fix this and that along the way, but think of all the learning experiences he will miss if you continue to do everything. Remember how smart she is and sacrifice the time to let her show you she can do it. you might be surprised at the results. With all these tips remember one piece of advice: choose your battles. If it is not disrupting your life, or causing chaos in your home, you do not have to change it. Also remember, there may be a lot of trial and error before you discover what works the best. listen to your child, not only to what they say but also to what they do. Parenting is the hardest job you will ever have, but keep smiling because, in your child’s eyes, you are great at it.


It’s a geography fact: Florida is surrounded by water. Both literally, but also figuratively when you consider the number of lakes, rivers and swimming pools that

dot the state. living in the middle of all that water makes a clear-cut case for the importance of learning to swim. From a safety stand-point, and a social one, swimming skills are an important part of a Florida kid’s survival. A child with a physical, mental or sensory disability does not have to sit out of the fun. Dr. Monica lePore, a national expert on adapted aquatics, says with the right approach and assistance anyone can learn to swim and feel comfortable in the water. lePore is a professor in the Department of Kinesiology in the College of Health Sciences at West Chester university, PA. She is the program director of its Adapted Physical education minor, which she initiated. lePore has literally written the book on adapted aquatics as the author of textbooks and training manuals that help aquatic instructors learn how to incorporate children with disabilities into their lessons. The spirit of adapted aquatics parallels that of special education; finding helpful accommodations that help children succeed in the least restrictive way possible. using hand paddles, flippers

and flotation devices kids can learn to swim, sometimes at the same level as their non-disabled counterparts. Coleen Martinez is a Master Teacher of Adapted Aquatics who was trained by lePore. She has written several articles on the topic including teaching children with autism and multiple disabilities to learn lifesaving skills. Martinez says her experiences have shown her real benefits of learning to swim. “Water is very therapeutic. Some children with autism enjoy being in the water because of the enveloping feeling, like being embraced in a hug. Children with cerebral palsy have found themselves able to move more freely in the water. People with arthritis have also found water to be very therapeutic, allowing them to move their joints more freely,” Martinez said. “For people who have a hard time moving on land, learning to move in the water is a great feeling of accomplishment.” So, where do you begin? Deciding if your child can participate in group lessons or will require individual instruction is a good place to start. Generally, if a child has an average attention span, safe head control and is able to close his mouth and throat on command, he is a good candidate for group lessons. A group lesson atmosphere

can help kids mimic behaviors and techniques of their peers, putting emphasis on the social setting

and inclusion. A child who requires a little more physical assistance, or needs help paying attention

and concentrating, may benefit more from a private lesson.

Ready set swim, ,Adaptive Aquatic Strategies Can Help Everyone Enjoy The Pool

For people who have a hard time

moving on land, learning to move in the

water is a great feeling of accomplishment.

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Finding a teacher is not always as easy as walking into the local yMCA and signing up. unfortunately, finding a teacher who is qualified and certified can be tricky. The first resources to tap into would be your local community pool. If there are no adaptive aquatic instructors on staff, there may be qualified teachers who are capable of doing the job. Martinez says someone who is confident with “all ages and abilities” can do a good job. When paired with input about the disability and its limitations from the parent, an experienced swim teacher can use their knowledge about swimming to anticipate accommodations. The cleanliness and temperature of the pool should also be factors in the decision of choosing an instructor. If the pool’s chemicals are not balanced properly the child’s health could be affected, and if the pool is too cold their interest level and participation will decrease. For group lessons, making sure there are adequate lifeguards and supporting teachers is extremely important. Without enough “eyes” in the pool, an instructor who turns away for a moment can open the door to dangerous possibilities. Kids can start adaptive aquatic swimming lessons at any age, and do not have to have a checklist of abilities to get started. The instructor’s primary role is to help the child feel comfortable and stay safe while in the water, no matter their skill level. That being said, there are strategies you can use as a parent to prepare for the lesson and get the most out of it. During bath time, trickle water over your child’s head and let it roll down their face. Take them to the community pool to observe lessons and swimming activities. Reading books about swimming or developing social stories about going to lessons will help prepare her for the first experience and hopefully make it less scary. “For some people with severe disabilities, just getting into the water is a major accomplishment,” Miller said. After meeting the child, most instructors will spend time in the beginning to bond and assess strengths and weaknesses. The child should dictate the pace of the lesson, and his safety and security should be the primary concern of the teacher. Should you observe a situation that makes you feel uncomfortable, or puts your child in a panic, it is wise to talk with the instructor about it and understand their reasoning. If you are not satisfied with the answer, asking the teacher to back-off a little would be entirely appropriate. learning to swim is only half of the equation, though. The other side of the story should be about basic water safety techniques that all parents should know and use. To make it easy, we’ve compiled a list of some of the top things to do and remember to keep your kids safe.

Safety Tips:SUPERVISION: Never turn your back on your child around water. It takes just seconds for tragedy to strike. Assign supervision responsibilities so there are never questions about which adult is responsible for watching the child. Don’t assume that taking swimming lessons will keep your child from drowning.

SAFEGUARD YOUR POOL: Build layers of defense around the pool. Permanent, four-sided fencing that encloses the entire pool area should be four to six feet high and equipped with self-closing, self-latching gates. For extra protection, you can purchase devices like pool covers and alarms, but the American Academy of Pediatrics says that these are not proven to be effective in preventing drowning for very young children.

PUT TOYS AWAY: Remove all toys from the pool when they are not in use. These colorful objects can be very attractive to little eyes. This also includes furniture and other objects in the pool area that could be used to climb over the fence.

ELIMINATE DISTRACTIONS: The leading cause of distractions around the pool is an adult leaving to answer the phone, attend to something inside the home or helping someone else in or around the water. Bring a cordless phone with you when watching kids during water play. You won’t have to go inside to answer it if it rings, and you will have it at hand to dial 911 if an emergency situation arises.

TEACH WATER SAFETY: Learn and enforce all the water rules. Never swim alone, obey lifeguard warnings, refrain from running around pool decks, and follow ‘no diving” signs.

FLOTATION DEVICE DANGERS: Flotation devices such as armbands, flotation rings and inflatable toys give parents and children a false sense of security. They can shift suddenly, deflate or slip from underneath leaving a child in a very dangerous situation.

Water safety tips courtesy of Infant Swimming Resource. Check out their website at infantswim.com


It’s inevitable. If you want to be a good parent, at some point you will have to take your kids on their first trip to Disney World. I don’t want to sound like a Debby Downer, but I’m not sure if I’m really looking forward to it. Aside from the fact that I’ll have to mortgage my house to pay for the tickets, I’m just not all that pumped up about fighting the crowds, sweltering in the heat or refereeing my kids in a double stroller. My kids are at that perfect age for their first trip, and my husband and I have been back and forth over whether or not the time is right to take them. Our two-year-old doesn’t really understand the word “no” and I’m particularly nervous about dealing with the issues that would come up taking my son, who has cerebral palsy, vision impairment and sensory issues. Would it really be as bad as I imagined? Maybe not. The more I researched the idea of taking a special needs child to Disney, the more I discovered it’s not only doable, but it can be totally fun and easy. If you have the right information, and you know who to ask, a trip to the theme park can really be that magical moment you’ve hoped for. So, get your scrapbook pages ready, because if you follow these tips you’ll be on your way to making some really magical memories.

BY CHRIST Y TAYLOR

IT’S THE HAPPIEST PLACE ON EARTH, BUT IS IT ACCESSIBLE? WE’LL SHOW YOU HOW

TO MANAGE THE MAGIC


BeFore You goChoose the Right Time. To everything there is a season, and that includes theme park crowds. Knowing the right time to plan your trip is probably one of the most important things you can do. Traditionally, the three weeks between Thanksgiving and Christmas is the best time to visit. The weather is cool, the crowds are down and the parks are in full-on festive mode with lavish decorations and happy holiday spirit. Another good time would be mid-October, after Columbus Day weekend. Prepare In Advance. If your child is one that likes routine, and a trip to Disney would really rock their world (not in a good way), consider prepping ahead of time. Make a flip-book of promotional photos of some of the popular rides and sights, like Cinderella’s Castle. Find some videos online to watch and explain the process from getting the ticket, to riding the monorail, to standing in line. Talk about the characters they will meet in the park, but prepare them in case their favorite is not available for an autograph. The more you can describe and prepare ahead of time, the easier it will be to process and understand when they get there.

Don’t Rush. Walt Disney World is over 25,000 acres of rides, shows, hotels, restaurants and shops. you can’t

possibly see nor do it all in three days, or even a week. Be realistic about what you can accomplish and make sure that you plan for breaks, rest and refreshments.

While You’re thereAsk for Assistance. your first stop at any of the parks should be to the Guest Relations office, usually located near the front gate, for a Guest Assistance Card. When requesting the card, tell the cast member exactly what kind of accommodations you need. For example, if your child is mobile enough not to need a wheelchair, but fatigues easily, ask that your stroller be allowed as a wheelchair. you’ll be given a special stamp on your card, and you can even ask for a tag for your stroller that immediately alerts ride and show attendants at that you will be need special assistance and you are allowed to push your stroller through lines, and other areas that strollers are usually prohibited. Kids who fatigue easily have weak muscles or other physical impairments can get an alternate entrance stamp. This allows your family to access the ride or show from a different area that is more accessible. Children with autism and related disorders or ADHD may use the alternate entrance stamp as well if they are unable to wait in long lines. The alternate entrance stamp does not put you at the front of the line, but it does decrease the wait. For shows and attractions

MICKEY MUST DO’Smagic Kingdom

It’s A Small World: You can’t go wrong with an all time favorite that’s fun for all.

Mickey’s PhilharMagic: Characters come to life on a 150-foot-wide 3-D screen.

epcot

Turtle Talk with Crush: Talk with this cool dude at The Seas with Nemo & Friends pavillion.

Journey Into Imagination with Figment: Figment is

back for this sensory-rich ride.

Hollywood studios

Playhouse Disney - Live on Stage: TV characters come to life in this puppet show.

Toy Story Mania!: 4-D fun combines the fun of a video

game with Woody and friends.

animal Kingdom

TriceraTop Spin: Wheelchair riders circle the sky with ease in this totally accessible ride.

Finding Nemo-The Musical: The underwater world comes to life in a musical stage show

Here are our top picks for some of the most accessible, family-friendly rides you’ll find at Disney parks.


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there are also accommodation stamps for visual and auditory impairments that will allow your child to sit closer to the stage, or have access to hand-held devices that act as closed-caption monitors for the action taking place. Disney is prepared to help your family have a successful trip, so ask them for whatever accommodation you may need. Though a doctor’s note is not usually required, it would not be a bad idea to throw one in the suitcase so you can present it to the cast member if there are any questions or concerns about your child’s disability or the accommodations they need.

Pass the Time. even with a Guest Assistance Card, you will spend a lot of time waiting so you might as well find ways to make it fun. Try an “I Spy” game where you are on the look-out for the first person who walks by eating a turkey leg, or you count all the people wearing white t-shirts. Throw some fidget toys in your backpack, such as squishy balls or chew tubes to give busy hands something to do, as well as a chance to regulate and self-soothe.

Lost and Found. One of the biggest fears for any mom or dad is losing sight of their child in a sea of people. Dressing them in brightly colored clothing will help you spot a wandering child quickly. you should also give clear instructions of what to do if they are lost, and a script they can repeat if they become separated from the group.

Controlling the ChaosDesignate Safe Places. Talk about sensory overload, Walt Disney World was designed to give guests an experience that stimulates all of the senses. If the constant input is too much to handle, try to find a quiet place to escape. Play places such as Tom Sawyer’s Island (Magic Kingdom), Honey I Shrunk the Kids (Hollywood Studios) and The Boneyard (Animal Kingdom) can offer a less-busy outlet to take a break and regroup.

Sights and Sounds. noise is a given at any of the Disney parks. Whether it is ambient noise of people talking in line or loud music from an outside show, the constant clutter of sound can be annoying to anyone, but certainly to a child with sensory issues. Pack a pair of earplugs to offer your child if the noise gets too loud to bear. Sunglasses not only shield the sun’s glare, but

also some of the visual distraction and stimulus around every corner.

Enjoy the Moment. Most of us spend our days on tight schedules and carefully-planned calendars. We’re conditioned to make the most of our time and use it wisely, so it is tempting to try to rush from one thing to the next at the park. That strategy may get you a lot of things crossed off on a list, but when you look back on the day it will be a blur. For your sanity, and your kids, keep a schedule that everyone is comfortable with.

Know Your Limitations. not every ride, or attraction, is appropriate for everyone and just because it is accessible does not mean you should ride it. If your child is sensitive to certain movements, 3-D, strobe lights, loud noises or others, stay clear. Saying no to a child who wants to ride Space Mountain, but has an immature vestibular system is not crushing their dreams, but saving them from an unpleasant memory. If you are unsure about what to expect at a certain ride, ask one of the cast members. Between their experience and your parental intuition, you’ll be able to make the right decision.

For more tips, suggestions and information go to FloridaCrossroadsOnline.com


The greatest gift you can give your child is the ability to do things on their own. Start by focusing on self-help skills like dressing, grooming and other daily tasks.

COMPILED BY CHRIST Y TAYLOR

FloridaCrossroadsOnline.com 2�

General tips:Dressing skills can take a lot of practice. Strengthen weak muscles and increase coordination with these exercises.

• look for garments at home or at yard sales that have large buttons, zippers, snaps and velcro closures to practice on. you might also find purses and backpacks that have lots of interesting closures to practice.

• undressing is usually easier than dressing so work on undressing skills first.

• Practice garment closures in front of child first, rather than on the body. Once that is mastered, practice with the clothing on.

• To model the task, sit behind the child with your hands out in front of them while holding the clothing. Have them help as much as they can.

• Play dress up with some of Mom’s or Dad’s clothing. larger clothing is easier to put on and remove than clothes that fit.

• For kids with hemiplegia, dress the effected arm or leg first.

• elastic waist bands are much easier to pull-up and push-down, and are ideal if your child is also working on potty-training skills.

• If your child has trouble standing or sitting unassisted, let them use a stool or sit in a chair. Make sure their feet touch the ground and if needed, their back is supported against a wall.

DRESSING

GAME TIME

Play dressing games like this one: Throw all different types of clothing in a laundry basket (hats, gloves, shirts, jackets, shorts, pants, shoes, socks, jewelry, backpack, fanny pack, etc.). Make up 6 cards, each with a drawing or picture of a body part on it as follow: a head, a neck, 2 hands, 2 feet, shirt or upper part of a body, pants or lower half of body. each person picks a card on their turn and has to find a garment in the basket that dresses that body part. Then they have to put it on.

Buttons:Your child will be more successful if they understand the concept of pushing and pulling before moving on to buttons.

• Practice putting things through slots, starting with a piggy bank and other narrow slots to push pennies or buttons through, etc.

• lacing cards and stringing beads build the concept of pushing through and pulling out

• Make a clothing board (info at floridacrossroadsonline.com) to teach fastners.

• When buttoning with the clothing on, it is often easier to align the buttons at the bottom of the shirt and button from bottom to top

2� | June/July 2010 Florida crossroads

Brushing Teeth:Not only can brushing teeth be a fine motor challenge, but sensory speaking as well. Be sensitive to the taste and touch of this task.

• Many children are not used to minty flavored food, so use a child-friendly flavored toothpaste. look for a swallowable paste if your child has oral-motor issues that make it too hard to spit.

• To encourage brushing teeth for a reasonable duration, create a song or poem to sing while brushing or use

a musical toothbrush.

• If your child balks at the toothbrush in their mouth, try desensitizing the mouth first with a vibrating teething

toy or chewing on a thick, crunchy or chewy food (like a bagel or a Twizzler) before brushing.

If your child initially dislikes using toothpaste, make it into a game: “Try to paint all the teeth in your mouth” for example. use a q-tip to “paint” the teeth if they won’t allow a toothbrush at first.

GAME TIME

Hand washing: It’s essential, but the sink can turn into a splash table very quickly if you aren’t careful.

• Teach how to turn on the faucet and using one finger to test the temperature. Start with turning on the cold water first. If using a single knob for hot and cold, make sure the knob is in the cold position before your child turns it on. Always supervise closely and test the water yourself when your child is first learning.

• use a picture sequence strip if necessary to teach the steps in the process: “turn on water, test temperature, wet hands, use soap, rinse hands, turn off water, dry.”

• If they are having difficulty learning the sequence, you can prompt them by telling them a step and then asking “What comes next?”

• To encourage washing hands for a reasonable duration, create a song or poem to sing while doing it. Song’s like Happy Birthday or Row, Row, Row your Boat are perfect timers to know when to quit scrubbing.

Make a picture sequence of the activity and leave it within view. You can photograph your own child during the activity for picture prompts, find clip art on the internet or draw the steps yourself.

DRESSINGSocks and Shoes: Stability is important for this task. Try using a chair or stool, back against a wall.

• For an easier position, lie on the back, bend one knee with foot flat on the floor and cross the other leg over the bent knee to bring the foot closer in.

• Master taking off socks and shoes before putting them on.

• Sew tags or pulls onto the sock to make grasping easier.

• Shoes and socks that are slightly larger for the child will be easier to learn. For practice use socks and shoes from an older sibling or even Mom or Dad.

• Try “Backwards chaining” where the child jumps in on the last step, then the last two steps and so forth, until it’s mastered.

• Place a small toy inside the sock or shoe and try to feel it, or grab

it, with their toes.

Tying Shoelaces: Even with velcro and slip-ons, it’s still important.• use two different colored laces,

to see the difference between the top and bottom loops and make it easier to follow along.

• Start off by working on a table top to help maintain a stable

posture when first learning the skill, then move to shoes.

Print picture cards at floridacrossroadsonline.com to help learn the steps of tying your shoes.

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Using Utensils:There’s no doubt about it, it’s going to be messy.

• Cup drinking is best taught by first using a cup with two handles and a top, then progressing to a covered cup without handles. The next step would be an open cup that is half full.

• Spoons are much easier to use than forks, so start there. If needed, use adapted utensils or build-up the handles with foam so it is easier to grasp.

• Some children have difficulty planning the motor movements involved in getting food onto a spoon or fork and then into the mouth. use a hand-over-hand approach to create a “motor memory” for the desired motion. Much hand-over-hand repetition may be needed.

• Instead of using a flat plate, use a bowl or a plate with high sides to make scooping the food easier.

• Grasping utensils correctly requires a lot of fine motor skill. Additional practice to develop the Pincer Grasp (see below) may be needed to develop

a non-fisted grip on eating utensils.

FEEDING & MOREMealtime StrategiesAdvice for avoiding potential food fights.

• encourage pretend play activities that revolve around eating. using play dough to “cook” food, or play food to have a pretend picnic are good places to start.

• Try not to get in the habit of eating with the TV on and try to eat all meals in the same spot.

• enlist your child’s help in the preparation and cooking of the meal where appropriate. If they are too young to help, give them their own bowl and spoon to work with. not only will it keep them interested in the meal, but it offers practice in stirring skills and sequencing.

• even if your child can’t (or won’t) eat meals independtly at family mealtime, set

them a plate and place portions of the meal on it. When they tolerate

the plate being next to them at every meal, encourage them to touch the food.

From, here build to taking a bite and then eventually eating.

• Try the sensory approach: see it, smell it, touch it, kiss it and bite it.

The Pincer Grasp:During infancy, a pincer grasp is a developmental milestone that typically occurs at 9 to �2 months of age. By using the index finger and thumb, or

the index and middle fingers opposing the thumb, to pick

up small objects, the child is able to pick up and place items in a

controlled manner.

A few things you can play with that strengthen

pinch and control: pick-up sticks, wind-up toys, lite Brite, pop beads, pegboards, Jenga, clothespins, closing ziplock bags and peeling off stickers from a sheet.

GAME TIME

In the KitchenCook up some fun while sharpening your skills.

• General cooking utensils have unlimited potential for occupational therapy activities such as picking up slices of bread with tongs, stirring batter in a bowl and using a melon-baller to scoop up grapes.

• Take the opportunity to reinforce safety and build awareness by explaining the consequences of touching a hot stove.

• For younger children, reinforce counting by noting how many eggs are being used or how many cups of water. For older kids, introduce the concept of fractions and measurements with ingredients. you’ll also be practicing control and precision by pouring oil into a measuring cup, or scraping the top of a cup of packed flour.

• Since you’re already getting messy, look for the opportunity to encourage tactile input through messy play. use whipped cream, pudding and other gooey textures to help tame sensory issues.Pre

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Daily ChoresNo matter what the task, breaking it down is key.

• Kids need specifics and structure. Instead of giving general requests like, “clean up the toys,” break it down into manageable tasks. Tell them to pick up the blocks and put them away first, then books.

• use labels and pictures to help your child know where everything goes. For toys, take plastic storage tubs or baskets, and put a laminated picture of the item (or items) that belong in it. This will help the child learn sorting, as well as helping you remember where everything is. Put the shape of a moon on the dresser drawer that holds pajamas, so it is easy to know where to find them and put them away.

• use picture cards that demonstrate each step of the chore, when your child is learning a new skill.

• Take a paint sample strip from the hardware store and put velcro dots in each color swatch. Attach the other side of the velcro to the back of your step-by-step picture cards. Whatever chore your child is working on, attach the appropriate pictures to the paint strip for an inexpensive and colorful display.

CHORES & RESPONSIBILITY

timers usually work well for many chores and activities. they help build time awareness and time management skills as well as help to keep your child on-task.

For younger kids: Place treats behind, under and next to knick-knacks. Tell your child after

they have finished dusting, they can enjoy any of the treats they find. For older kids: Make a scavenger hunt list of things that need to be picked up (toys, clothing, etc.) and set the timer. Who ever finds the most items (and returns them to their proper spots) in five minutes wins.

GAME TIME

For more tips, suggestions and printables go to www.FloridaCrossroadsOnline.com.

Special thanks to Mindy K. Buckner, MS, OTR at www.therapystreetforkids.com for permission to use information and resources from her website.

Building ResponsibilityThe more independent your child becomes, the more responsible they will be as well.

• use a smiley face chart where you can reward good behavior and completed chores. When a bad choice is made, take the smiley face away. Have your child choose a prize and when they earn enough smiley faces, they get the reward.

• Remember, some kids need immediate reinforcement for doing a good job, and others can wait until the end of the day or week. Figure out where you child falls and reinforce.

• Make a visual schedule of chores for you child to know what is expected of them. Take a sheet of paper for every chore on the list and cut them into three sections. On each section, illustrate three steps to the chore. Punch holes at the top and assemble the chore cards in a three-ring binder. As the steps are complete, flip them over. When all the pages are flipped, the chores are done.

• Independence breeds responsibility. The more you can let your child do on their own, the greater their sense of accomplishment. It’s hard to let go, but the results can be nothing less than inspiring.

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We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights:

We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

We have a right to trust our instincts about our kids and realize that experts don’t always know best.

We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

We have a right to choose alternative therapies for our kids.

We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

We have a right to wonder “What if…” every so often.

If you feel like you need permission to be the parent you are (or want to be), today is your independence day. Take these inalienable rights and let freedom ring!

By ellen Se IDMAn

Parent’s Bill of Rights

We have a right to play aimlessly with our children. not for therapeutic or educational purposes—just for fun.

We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.

We have a right to react to people’s ignorance in whatever way we feel necessary.

Sometimes we need to play for no other reason except to just have fun with our kids.


We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain.

We have a right to take a break from Googling therapies, procedures, medicine and treatments for our

We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

We have a right to go through the grieving process and realize we may never quite be “over it.”

We have the right to give our kids chores. even better if they can learn to make breakfast in bed for us.

We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

We have a right to have yet more Pinot Grigio.

We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.

kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

We have a right to talk about how great our kids are when people don’t get it.

We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”

We have a right to wish that sometimes things could be easier.

We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009. For a printable copy, e-mail [email protected]. Printed with permission from Love That Max blog at http://lovethatmax.blogspot.com/. © Love That Max, 2010.

We have a right to talk about how great our kids are when people don’t get it.

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FloridaCrossroadsOnline.com 29 FloridaCrossroadsOnline.com 29

THERAPY + TECHNIQUE

MAKINg A SPLASHtaking therapy to a new environment, many kids find fun and a lot of benefit to working in the pool.

WHAT IT IS: Physical Therapy, Occupational Therapy, and Speech Therapy sessions preformed in a pool.

WHO IT BENEFITS: Cerebral Palsy, Chronic Pain, Down Syndrome, Muscular Dystrophy, Autism and more.

Imagine the pool as a really big splash table. That is the way Andrea Salzman, MS, PT and founder of Aquaticnet.com describes the idea of taking traditional therapy into the water. While generally referred to as aquatic therapy, Salzman says that term can be a little misleading. Just as a physical therapist may choose to use a gym mat or an occupational therapist would use a swing, water can be thought of as just another tool in a therapist’s belt. “In water, gravity loses its strength and the body’s joints are unloaded, yet available, unlike when positioned on land. The warmth of the water establishes an environment of relaxation and peacefulness. The client is touched and touch by itself is often healing. Fluid movements are easier to perform than their counterparts on land. Joint mobilization, soft tissue elongation, and massage become less like therapy—and more like dance,” Salzman said. Aquatic based therapy can benefit a wide range of diagnosis and disabilities. The three-dimensional aspect of water provides resistance in every direction the body moves, which is ideal for strength training exercises. Children with balance issues can also find a safe environment to practice body alignment and skills that would be unsafe on land. The water’s buoyancy can also help reduce pain and swelling for chronic conditions such as


arthritis or those that are injury-related, such as the lower extremity edema after surgery. In addition to its physical benefits through aquatic based therapy, water can also provide sensory input and social-awareness opportunities for kids with autism, sensory processing disorder, developmental delay and language delay. Water is unique in that it can provide vestibular (motion), tactile (touch), proprioceptive (body awareness in space), visual and auditory input simultaneously. It also can be a way to bridge the gap between a child with a disability and those who are not. “The pool is such a social environment. The water allows kids to be free and look similar to their peers. Because it is easier to move around, many times the pool is a much friendlier place,” Salzman said. Katherine Kinder is an Occupational Therapist at Orlando Health’s Pediatric Rehab Department. Two mornings a week she dives into the pool with patients who have been diagnosed with cerebral

palsy, Down syndrome, juvenile arthritis, multiple sclerosis and others. Though the conditions may differ, the end results are similar. “We’ve seen benefits like improved strength and posture, reduction in pain, increase in range of motion and more functional mobility,” Kinder said. Therapy can begin even before the first toe dips into the water. Children practice dressing and undressing skills by removing shirts or other clothing before entering the pool, motor planning when they use the pool steps to get into the water and coping abilities as they acclimate to the wet environment. Sometimes the transition from land to water is as much a part of the therapy as the physical exercises. To participate in aquatic-based therapy, the child does not need to know how to swim. The therapist’s role, no matter what the child’s level of experience, is to make them feel safe and comfortable in

the water. As the child progresses in strength, skill and willingness the therapist can present a wider range of therapeutic opportunities. For some kids that process may take some time. One of Kinder’s patients, Matthew Slauter, first came to the pool two years ago and was less than excited to be there. Kinder had already been working with Matthew on land when she suggested aquatics to Matthew’s mom, Jennifer. Matthew’s first time in the pool was full of tears and anxiety, but Kinder patiently helped him feel safe and confident. “He enjoys it now,” Jennifer says, watching Matthew float on a purple swim noodle. “His good relationship with Katie helped him feel more comfortable, and now he’s usually always smiling.”

Matthew’s mitochondrial disease effects how his body processes energy and has impact on his motor skills. Through traditional physical and occupational therapy, both on land and in the water, and on a horse through

hippotherapy, Matthew has greatly increased his trunk strength and is now able to take steps with a walker. “He’s doing things now he couldn’t do before. A year ago he couldn’t support himself on the swim noodle like that,” Jennifer said, as Matthew easily balanced himself under Kinder’s watchful eye in the water. The social aspect of the pool is one of the things Melissa Duncan has appreciated the most about aquatic-based therapy for her son. When Tucker laughs watching swim lessons that are happening at the other end of the pool, or smiles at

SMILING NOWMatthew Slauter and his therapist Katie Kinder have been working with each other for two years.


the kids swimming next to him, he is a happy 18-month-old enjoying the morning at the pool. For a kid whose schedule has been packed with therapies and evaluations since birth, the social setting of aquatics makes his PT session feel a little less like work and a lot more like play. The water is especially soothing for Tucker who has arthrogyposis. Tucker’s disorder causes him to have limited joint strength and small, weak muscles. In the water he is able to move easier and with less pain. Therapists who are most effective with aquatic based therapy have been through some type of certification or training. Though it is not required, and any PT, OT or SlP with a permit to practice could move to the water for their sessions, specialized education helps therapists learn how to take the skills they already have and adapt them to the water. Aquatic Therapy university, based out of Minneapolis, Mn is operated by Andrea Salzman and offers classes at 7 other regional campuses across the country. Courses are available for pediatric therapists at beginner, immediate and advanced levels. Aquatic-based therapy is traditional therapy, just performed in the water, so finding it covered as a regular therapy visit by most insurance companies is relatively easy. Finding a therapist who can work with water as a tool, can be a little trickier. The first place to start would be to call the rehab department at a nearby hospital, or a neighborhood pool that offers therapeutic services. Resources like Aquaticnet.com or FindAPool.com can also help with the search.

COOL AT THE POOLTucker Duncan looks forward to his therapy sessions, and enjoys swimming alongside his peers .

WATER VS. LAND: What can aquatic-based therapy provide that traditional therapy on land can’t? Here are four components.

BUOyANCyProvides assistance and support decreasing gravity’s effect on weak limbs that can’t bear a lot of weight. Buoyancy allows you to move more easily with decreased stress on muscles, joints, and bones.

WARMTHAquatic therapy should be provided in a heated pool with a consistent temperature. The warm water relaxes muscles and allows for improved joint range of motion.

HyDROSTATIC PRESSURESwelling in the ankles and feet can be reduced as hydrostatic pressure from the water surrounding the body helps circulate blood from the legs to the heart. Reducing swelling can decrease joint tenderness and increase range of motion.

RESISTANCEOn land, gravity causes resistance, but only in one direction. This can cause muscles to over develop or be under utilized. The viscosicty of water provides three-dimensional resistance, which can also increase sensory awareness.


NORTH + WEST + CENTRAL + SOUTH

NORTH

Let us know what’s going on in your community. Submit your upcoming events and meetings at FloridaCrossroadsOnline.com.

What’s Up?

WEST

JUNE 20�02010 down syndrome of Jacksonville golf classicJune 21, 2010 • 9:00ammarsh landing country clubPonte vedra BeachWe hope you will join us for a fun filled day of golf at this beautiful golf club. your involvement promises to make a difference. For more information please contact Debbie Revels on 904-353-6300; [email protected]; www.dsaj.org

sensory Friendly Films: toy story 3 June 26, 2010amc regency 24Jacksonville, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

JULY 20�0clay county golfJuly 8, 2010golf club at Flemming island,orange Park, FlContact nancy Keating, (904) 284-9859; www.specialolympicsflorida.org

marion county aquaticsJuly 25, 2010newton a. Perry aquatic center,ocala, FlContact lynn Brantley, (352) 671-1434; www.specialolympicsflorida.org

nassau county aquaticsJuly 30, 2010mcarthur Family Ymca,Fernandina Beach, FlContact Tom Christenson, (612) 296-4860; www.specialolympicsflorida.org

June 20�0manatee county golfJune 25, 2010manatee county golf courseBradendon, FlContact eileen Merchant, (941) 756-4209; www.specialolympcsflorida.org

sensory Friendly Films: toy story 3 June 26, 2010amc veterans expressway 24tampa, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

July 20�0Bowling in the tropics viJuly 18, 2010 • 2:00pm - 5:00pmPin chasers midtowntampa, FluCP of Tampa event;www.achievetampabay.org

Hillsborough county aquaticsJuly 31, 2010new tampa Ymcatampa, FlFor more information contact Tom Denham, (813) 362-2573www.specialolympcsflorida.org

September 20�0sParc 2010september 11, 20108:00am - 5:00pmmorgan Fitzgerald middle school,Pinellas Park, FlThe 4th Annual SPARC (STAnD-Pinellas Accessing Resources Conference) Conference brings resources to one venue for one day for parents, teachers, therapists, advocates and much more. For more information contact Melissa Tremblay at [email protected] or call 727-784-8493. www.standadvocates.org

dr. dick gundermann golf classicseptember 30, 2010Plantation Palms golf club,land o-lakes Fl28th Annual Dr. Dick Gundermann Golf Classic Sponsored by Morgan Stanley Smith Barney, hosted by uCP Tampa. www.achievetampabay.org

duval county aquaticsJuly 31, 2010UnF aquaticsJacksonville, FlContact Donica Hayes (904) 307-4221; www.specialolympicsflorida.org

area 3 golfJuly 31, 2010southwood golf coursetallahassee, FlContact Tracy McDonald (850) 509-4682; www.specialolympicsflorida.org

Jackson county golf/area 2 golfJuly 31, 2010caverns golf coursemarianna, FlContact David McKenzie (231) 675-2852; www.specialolympicsflorida.org


JUNE 20�0annual Family cafeJune 18-20, 2010disney’s coronado springs resort,orlando, FlStatewide event designed to meet the informational and networking needs of individuals with disabilities or special health care needs and their families; www.familycafe.net

smashmouth Pizza/Big stacks Poker invitationalJune 18, 2010 • 12:30pmsanctuary ridge golf club,clermont, FlBenefiting the atheletes of Special Olympics Florida. The ultimate Friday

CENTRAL

Education is Our Focus at UCP of Central Florida

As a leading educator in Central Florida, UCP of Central Florida helps children of all ages and abilities learn and grow. From infants to college-age students, both with and without special needs, UCP offers educational programs at six campuses that help students excel and succeed academically and socially.

Program highlights include:FREE Voluntary Pre-Kindergarten (VPK)Infant, toddler and preschool programsPre-K through third grade charter schoolMiddle and high school for children with special needsTechnology and arts integrated into daily curriculumLow student-to-teacher ratiosIndividual education plan for each studentPhysical, speech and occupational therapyPrivate pay, Early Steps, 4C and other funding sources accepted

ENROLL YOUR CHILD TODAY!Call (407) 852-3300 or visit www.ucpcfl.org

The Experts for Children with Special Needs

of Central Florida

experience including golf, food and poker; www.specialolympicsflorida.org

sensory Friendly Films: toy story 3 June 26, 2010amc altamonte 18altamonte springs, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

JULY 20�0space coast surfers for autismJuly 24, 2010cocoa Beach, Flwww.surfersforautism.org

AUGUST 20�0Fun coast surfers for autismaugust 28, 2010daytona Beach, Flwww.surfersforautism.org

SEPTEMBER 20�0nacdd 2010 annual conferenceseptember 27-28, 2010renaissance orlando, sea Worldorlando, FlThe national Association of Councils on Developmental Disabilities is pleased to announce it’s 2010 Annual Conference: “Honoring Our Past ... Shaping Our Future!” www.nacdd.org

�� | June/July 2010 Florida crossroads

SOUTHJUNE 20�0martin county golfJune 26, 2010martin county golf clubstuart, FlContact Jeff Hancock, (772) 418-2113; www.specialolympicsflorida.org

sensory Friendly Films: toy story 3 June 26, 2010amc merchants crossing 16north Ft. myers, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

sensory Friendly Films: toy story 3 June 26, 2010amc sunset 24south miami, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

sensory Friendly Films: toy story 3 June 26, 2010amc indian river 24vero Beach, FlVisit AMC theaters for a sensory friendly showing of Toy Store 3.www.autism-society.org

Bowling for Buddies tournamentJune 24, 2010miami, FlJoin Business Buddies for a night of bowling, food and cocktails.www.bestbuddiesflorida.org

JULY 20�0Broward county golfJuly 1, 2010oriole country clubmargate, FlContact Michelle evans, (954) 262-2150; www.specialolympicsflorida.org

collier county golfJuly 10, 2010golden gate golf coursenaples, FlContact David McKenzie, (231) 675-2852; www.specialolympicsflorida.org

st. lucie county aquaticsJuly 30, 2010ilous ellis PoolFt. Pierce, FlContact luica Berry, (772) 462-3093;www.specialolympicsflorida.org

Pasco county aquaticsJuly 30, 2010new Port richey rec & aquatics ctrnew Port richey, FlContact Val lundin, (727) 774-3062; www.specialolympicsflorida.org

lee county aquaticsJuly 31, 2010cypress lake High schoolFort myers, FlContact Dorothy Barilla, (239) 432-2031; www.specialolympicsflorida.org

Palm Beach county aquaticsJuly 31, 2010aqua crest Pooldelray Beach, FlContact Dan Fawcett, (561) 312-4979; www.specialolympicsflorida.org

SEPTEMBER 20�0UcP of miami share & care Fundraising luncheonseptember 21, 2010 • noonHyatt regency miami,miami, Flwww.ucpsouthflorida.org

UcP of Broward share & care Fundraising luncheonseptember 23, 2010signature grandwww.ucpsouthflorida.org

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I got a phone call this morning; a mom in a neighboring county wants to talk to me about how her child’s school handled an incident

regarding her daughter, who has selective mutism. Her points are valid and no doubt there are concerns that need to be addressed. Another call; a step-mom of a young lady who just finished high school in another state. She and her husband would like to find out what type of programs are available in Central Florida. Where do young adults who have graduatedl go during the day if they are not working? Are there opportunities for her to be around people her own age and socialize in the community? How do we find them? The next call; what are the options for my son as he graduates with a special diploma next month? Is there a college program close by? Will he be able to live on campus? Will there be supports for him on campus? How about a campus social life? Peer mentors? Safe environment? An e-mail from a family in a crisis situation needs assistance in finding a qualified service coordinator who will be able to assist them in locating an agency to provide dependable home health care for his daughter who was just released from the hospital after several weeks. I pause, and think of my own situation of finding a suitable, safe, convenient place for my own son to live in a couple of years. A place that he can call home, that is fully accessible, where an aide can assist him in his daily living needs, where transportation to and from community events are possible and in fact encouraged. The common theme here is something that I see over and over. I call it the Frustrating Five: Health, education, Community living/Social Interaction, employment and Transportation. Our children want their independence, they want a job that actually pays, they want to attend college classes, and they want to live with their friends in a community of their choice. Isn’t that, what we as their parents, have spent the past several years attending scores

of meetings, writing and re-writing plans, building social supports through organizations and assembling knowledgeable medical teams trying to accomplish? All of these families have children and young adults who have a broad range of abilities to go along with an equally broad range of diagnosis. yet after all these years, all of the different groups, organizations and agencies still want to tackle these issues separately within their related disability community. That is anything but inclusive. Funding streams are drying up and they will not be flowing freely anytime soon. Isn’t it time that we all unite and bring these issues to our policy makers, as well as offer possible solutions as a united front? every organization that represents individuals with disabilities centers its advocacy on issues concerning education, health, employment, housing and community living and transportation. These issues are universal, regardless of the diagnosis. As family advocates and self advocates, we must continue to focus on the big picture by continuing to be inclusive in our efforts especially when seeking funding for our loved ones. Reach out to those around you who are similar, but different. Be the example.

We are all looking for the same basic things, so why don’t we join forces?

B y J e A n n I e F O R T H u B e R

Inclusive Advocacy

ADHD +ASPERGER’S + AUTISM + CEREBRAL PALSY + CYSTIC FIBROSIS + DOWNS SYNDRO

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WWW.FLORIDACROSSROADSONLINE.COM

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.

florida crossroads june/july 2010

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