Parenting Special Needs by Ahren Hoffman

FA M I LY T I M E • I N F O R M AT I O N • I N S P I R AT I O N

Super

Part III of Part IV

Dadvocates

MAKING A DIFFERENCE Series

PERSONVENTURED

Entrepreneurship Series

mission

E L B I S S PO FAMILY FUN

inside this issue... May jun 2015 21

36 10 60 MOM & ME COVER WINNER: Korky and William Waites

Features

Super Dadvocates

Stephen Beck, Rick Hodges and Phil Pedlikin

Mission Possible

Beyond The IEP Team

Travel Tips (New York)

Momtrepreneurs

Succesful Family Vacations 6 Tips for Parent Participation at School Making Fun Memories Shinging a light on six special Momtrepreneurs making a difference in our community.

psn community news Noteworthy! Where Hope Grows VERMONTâ&#x20AC;&#x2122;S World-Class Recreation New NSPCC video will help keep deaf children safe from sexual abuse

check it out!

New Products & Products You Can Use & Win!

real life

Ask the

PROFESSIONAL PROFESSION AL

Family Time Matters 14 Why Key Ingredients 16 Coping With the life you never Imagined Overwhelm 18 Avoid With these essential strategies MAY/JUN 2015

Parenting Special Needs.org

41 inside this issue... May jun 2015 your life Time Outs 32 Mommy Enjoy the rainbow at Boom Lake, Alberta, Canada

Moments 62 Proud Jordan exhibits a CAN & WILL Do attitude

in focus

46 Person-Ventured Entrepreneurship: Part lll of a IV part series

V = Viable Concepts for a “PersonVenture” Entrepreneurship

health & fitness Fun 52 Fitness The Family Factor of Five: Making Time for Fitness (and Actually Doing It)

Diets 54 Special How Will We Eat? Summer Traveling Tips

fun & functional

in every issue 6 psn contributors 7 from the heart 9 contest/giveaways

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Appening? 56 What’s Summer Travel & Outdoor Fun with Apps

of Play 58 Power Paperclip Jewerly Video + Tips 59 ASL Let’s Play Uno Fun: 60 “Foodie” Strawberry & Lime Infused Water

Developing communication skills helps kids with autism live fuller, richer lives! PRESENTING AVAZ TOGETHER:

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psn contributors making a difference Founder/editorial director

Chantai Snellgrove

chantai@parentingspecialneeds.org Publisher/editor-in chieF

Tom Snellgrove

tom@parentingspecialneeds.org design director Meme Hieneman Ph.D. in Special Education

Barbara Sher

Pediatric Occupational Therapist & Author

Eric Chessen

Barrie Silberberg

M.S., YCS, Exercise Physiologist

Author

Chantai

info@parentingspecialneeds.org graPhic designer

Michael Leisttein

info@parentingspecialneeds.org adVertising sales

Chantai/Judy Jaszcz Corporate Sponsors & Ad Sales Manager sales@parentingspecialneeds.org

Curt Mellott

Tracy Felix

Douglas Haddad

Christina Bartlett

Jim Hasse,

Xlinked1 Special Needs blogger

Ph.D. (“Dr. Doug”) Author, Full-time Contributing Writer

Registered Dietitian

Founder of cerebral-palsy-careerbuilders.com

MidWest & Lower Eastern curt@parentingspecialneeds.org

Advertising Sales Person Needed

inquire at Sales@parentingspecialneeds.org circulation & Pr

Bob Jaszcz

bob@parentingspecialneeds.org Webmaster

Sean Thompson

sean@parentingspecialneeds.org

Cynthia Falardeau Executive Director of the Education Foundation of IRC

Cristen Reat Co-Founder Bridging Apps.org

Ernst VanBergeijk

Ahren Hoffman

Ph.D., M.S.W. NYIT/VIP

(CTRS), Manager of Industry Relations & Partnerships at the National Lekotek Centerr

“A life not lived for others is not a life.” ―~ Mother Teresa Angie Craft

Becca Eisenberg

Amanda Morin

Deaf Education Specialist; Spec. Ed. Teacher

Speech Language Pathologist

Education Writer, Special Education Advocate & Author

Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www. parentingspecialneeds.org Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reflect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2015 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PubliShed by: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968

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Tel: 772-532-4423 • Fax 772-299-4310

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editorial director from the heart

Changes...

5 THINGS I LEARNED FROM THIS ISSUE

1. How a 23 y/o, nonverbal, woman with quadriplegic cerebral palsy became an entrepreneur (p.46). 2. Strategies and steps for planning a vacation (p.28). 3. There are businesses that train businesses to be more accommodating to people with special needs (p.40).

As I think about the speed at which “things change”, I can’t help but marvel at the sheer amount of information and opportunity that is, literally, at our fingertips. A few clicks of the computer keyboard and “woosh...off we go”....headed somewhere as fast as the fiber-optic lines will take us. I see that the ability to make a difference can be, in some cases, almost instantaneous like a prom proposal or a request for an affordable bionic arm. A review of a therapy center, camp, or service, for example, posted on line can cause people to either line up out the door, or boycott all together. Facebook, Google, Twitter, Parenting Special Needs Magazine are all available at the “click of a mouse”. World issues are sent to our in-boxes daily. Think about that: 10 years ago, were we as able to be informed as we are today? Let alone have so much access that we “can’t be bothered” sometimes. It reinforces to me that when good things....important things...happen, I am grateful I can do my part to make sure the information gets out there. A great example is our Dadvocates section this issue. Did you know that three men who were instrumental in getting the ABLE Act passed are being featured this issue? We are also highlighting six “Momtrepreneurs” that are also making a difference. There are so many good, wonderful and helpful pieces of information in each issue that I hope you will set aside some of your time (I know there seems to be precious little of it most days) to read all of the information... at your leisure, of course. All the best,

4. Citrus rinds can create a bitter flavor in infused water (p.60). 5. Kids can travel the world virtually with a kid travel guide (even send postcards) (p.56). Next Issue: LIFE SKILLS

Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org

My baby, Kailee, 18 years ago, She is also the inspiration for this magazine.

MAy/JuN 2015

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psn community news

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updates

VERMONT’S World-Class Recreation is Available to Equal Everyone Opportunity Adventure

WHERE HOPE GROWS An inspiring story about Calvin Campbell, a professional baseball player who was sent to an early retirement and struggles with the curveballs life has thrown him. His life is awakened and invigorated by the most unlikely person -- Produce, a young-man with Down syndrome who works at the local grocery store and struggles with the curveball life has thrown him. Calvin begins to see the world through Produce’s eyes. In Theaters May 15

A new web page focuses on outdoor opportunities for people of all abilities. In honor of the 25th anniversary of the Americans with Disabilities Act, a new website makes it clear that Vermont IS a place for equal opportunity. The site features an interactive Google map of adaptive recreational opportunities and accessible facilities. Visitors of all abilities will be able to find ways to enjoy Vermont’s breathtaking beauty. Visit: www.forbrain.com

New NSPCC IN THEATERS MAY 15, 2015 video will WhereHopeGrowsMovie.com /WhereHopeGrows help keep deaf children safe from sexual abuse National Society for the Prevention of Cruelty to Children (NSPCC) is launching a new film to coincide with Deaf Awareness (May) and has been produced by Liverpool Street Productions and deaf film-maker Bim Ajadi. The video aims to teach deaf children about the Underwear Rule (P.A.N.T.S.) and encourages them to share secrets that upset them with a trusted adult. It teaches them that their privates are private and that their body belongs to them. Download your guide to the Underwear Rule. www.nspcc.org.uk/preventing-abuse/keeping-children-safe/underwear-rule/

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‘ 2015 MOM & ME Cover Winners!

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Great Giveaways Log on to parenting special needs.org click on CONTESTS and enter to WIN these great products.

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Riding bikes outdoors in St. Simons Island, Ga., are Mom and Me winners William Waites, 12, and his mom, Korky. We can’t forget his service dog (in training), Jaina. William has been diagnosed with Cerebral Palsy and has additional challenges both learning and health. He enjoys riding his “trike” and ringing his bell as he speeds off down the trail. The picture was taken by his twin brother, Joseph. Both boys were born at 25 weeks due to Twin-Twin Transfusion Syndrome (TTTS). Korky and Dob (Dad) say that he is an amazingly hard worker and never meets a stranger! Cover Image Courtesy: Korky Waites MAY/JUN 2015

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rian is 15 years old and has always suffered with difficulties focusing in the classroom. «It was really difficult and frustrating and I often felt discouraged» he says. But those difficulties have disappeared now that Brian is using Forbrain. «It’s just amazing! I can remember all my lessons and complete my homework,» says Brian. What is Forbrain and how can it help improve focus and attention? Based on years of research, Forbrain is a brain-training device that includes a headset with a microphone and a dynamic filter. Doctor Carles Escera, a cognitive neuroscience specialist, director of the Institute for the Brain, Cognition and Behavior at the University of Barcelona has scientifically reviewed Forbrain and says about these sound variations that «The brain needs to learn to cope with and to filter out these random variations created by the dynamic filter in what can be regarded as a training exercise for the executive control of attention.»

Users read, talk or even sing out aloud and instead of hearing their voices through the usual method of air conduction, these sounds are transmitted via bone conduction.

Bone conduction creates clearer sound and allows a user to hear and to attend to themselves more easily. Varying Frequencies get the Brain’s Attention. In addition to the clarity offered by bone conduction, the dynamic filter constantly changes the frequencies of these sounds, thus training the brain to be far more attentive. Designed to also help with specific speech and language problems, Forbrain provides a workout in which the brain has to attend more closely to sensory input. Forbrain can improve not just attention, but also memory, speech, language acquisition, reading, writing and confidence. The simple to use device is fun too, appropriate for all ages and can be used in any setting. Typical protocols require the use of Forbrain for between 10 and 30 minutes a day.

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The AuTeachism Therapist App is a free app that allows the therapist to harness the fun and entertainment of playing with iPads and tablets and turn traditional applied ABA therapy into an enjoyable activity for children with impairments associated with Autism, Social Communication Disorders or language delays. AuTeachism Therapist App is an effective tool for therapists who can customize lessons, automatically track correct/ incorrect responses and access targeted teaching programs anywhere they go. www.auteachism.com

MyBuckleMate makes buckling and unbuckling easier for parents, kids and individuals with limited dexterity due to Arthritis or other disabling conditions. It fits in tight spaces and securely, allowing seats to be folded down without removing it and without altering the buckle in any way. MyBuckleMate also provides an important safety measure allowing for ease when buckling and unbuckling. MyBuckleMate is the only product of its kind. Made in the US www.mybucklemate.com

Self-Cooling Stroller liner geleeo Geleeo keeps kids cool and comfortable and was recently named to the National Parenting Centerâ&#x20AC;&#x2122;s list of Seal of Approval Winners for Spring 2015. This revolutionary product is designed to provide kids with a constant, gentle and soothing cooling sensation, the liner fits all toddler-size strollers and requires no freezing, batteries or energy consumption. Geleeo keeps kids cool, comfortable and is 100 percent safe to use. For more information on Geleeo, visit our website. www.geleeo.com

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Some of these Special Products are available for Parenting Special needs’ Contest Winners. to enter, click on ConteStS on our site and register.

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healthy Solutions for focus & fuel

e applaud inventive companies that are coming up with innovative and fun ways for kids to lead healthier, more productive lives. this article will explore creative product approaches for fiddling fingers, active feet and festive foods.

W in it!

What do hands and feet have to do with a child’s mental abilities to focus and attend? Amazingly a lot. Some children need sensory input to calm over-energetic hands and feet which allows them to mentally concentrate on tasks like reading, listening or writing.

Fiddle Focus Busy Hands does this by offering a fabric square with a sensory-rich array of touch and texture for fingers to feel, stroke and fidget with. it’s like a handy minisecurity blanket for kids’ bodies and minds.

Bouncy Bands for Desks is a creative and clever way for kids to keep their feet moving without getting out of their chair or disrupting the class. By playfully pushing their foot against a tight rubber band that sits snug between a typical

helpful Books for Parents of Children Silent running: our family’s Journey to the finish line with Autism by Robyn K. Schneider with Kate Hopper, Triumph Books

Robyn Schneider’s book shares her family’s remarkable story of triumph in the face of enormous hurdles, and the passion that has fueled their fight. It is an extraordinary and inspiring story of perseverance and hope, and of never giving up. It is the story of how running saved their lives. Eventually, they reach a place where running, rather than autism, defines them.

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W in it! school desk’s front legs, kidsget a sensory kickback that satisfies their need for physical stimulation and repetitive muscle movement.

Autism Resources at Your Fingertips! The Autism Community Hub is the best source for resources on Autism Spectrum Disorders (ASD) for individuals and the general community.

So let the hands and feet play while the mind finds a way to calm, transition, or just regulate a child’s behaviors. often habits formed in childhood last forever, and that can include eating habits. Meet Kidstir. this company took nutritional education and cooking and made it a playful, positive, participatory way for kids to engage with food, understand the basics of nutrition and build a positive relationship with food for their future. cooking instructions are as friendly and visual as a children’s book and the recipes appeal to young appetites looking for fun and fuel. So keep those hands and feet moving to clear the way for further focus. And get kids cooking with a kit that explores fresh, fruitful culinary fun. w For more play ideas and toys for children with special needs go to www. ableplay.org. This website was created by the National Lekotek Center to encourage children of all abilities to experience the benefits of play. Find us on Facebook. Reviewed by Ahren Hoffman, Manager of Industry Relations &Partnerships, National Lekotek Center; ahoffman@lekotek.org

with Special Needs flourish -People with Disabilities living life with Passion by Karin Melberg Schwier, Copestone Writing and Illustrating

Karin Melberg Schwier reveals the creativity behind making vibrant and interesting lives. In the book, we meet 25 people who have been encouraged and supported to pursue their own passions, and helped to nourish interests they never realized existed within themselves. As champions for good lives, we should all be concerned about helping people discover and uncover what makes their heart sing.

Presented by Children’s Specialized Hospital and Kohl’s Autism Awareness, the Community Hub is the only comprehensive source providing reliable information on Autism in your community. Together, we can build stronger, more inclusive communities.

Take an adventure through The Community Hub now! VISIT:

www.childrens-specialized.org/ KohlsAutismAwareness

This community service is made possible by the Kohl’s Autism Awareness program at Children’s Specialized Hospital

Why FAMILY TIME Matters! by Douglas Haddad, Ph.D.

pending quality time together with family is arguably the key ingredient for fostering strong bonds and relationships between parents and children. Children experience love firsthand during a family get together of any magnitude. Even the most simple or mundane activity can serve as the basis for creating a strong emotional bond with a child and allow for a deeper connection to take place.

Reason #1: Live longer Research demonstrates that spending quality time with loved ones is actually healthy. According to a study from Brigham Young University and the University of North Carolina at Chapel Hill, a strong network of family and close friends is linked to increased longevity. Parents serve as primary role models for their children. Find time to engage in a fun, physical activity outdoors with your child. Here are a few ideas for this summer:

“Family is the most important thing in the world.” - Princess Diana

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• • • • • •

Take a nature walk. Start a family garden. Plan a nature scavenger hunt. Take a family bicycle ride. Play an outdoor sporting activity. Go swimming.

Reason #2: Have more influence over the decisions your child makes with his/her peers Having a strong bond with your kids allows for greater influence in guiding them to make wise decisions in different life situations. As children venture into “teenhood”, they begin to form stronger relationships with their peers and are put in precarious situations, surrounded by pressure to engage in risky behaviors. Needless to say, adolescents who spend more time with their family are at a decreased risk of experimenting with smoking, alcohol, and engaging in substance abuse.

Reason #3: Improves a child’s academic performance The role of parental involvement in a child’s academic performance is huge, especially in the early academic years when the child is “learning how to learn”. Parents who actively provide assistance and guidance when needed are able to help their children reach their

advice real life intellectual potential. Researchers at North Carolina State University, Brigham Young University and the University of California-Irvine find that parental involvement has a more powerful influence on a child’s academic performance than the school the child attends.

Dr. Doug’s Tips for Preparing a Child for Academic Success • Get involved in school-based functions. Volunteer for events or field trips. Attend school meetings, especially the Open House(s) to meet the teacher(s). This provides a child with the message that you care about their academic progress and will hold them accountable for their performance. • Check homework each night to see that a good effort was put forth and that all assignments are complete. • Prepare a child’s backpack the night before to ensure that all materials make it from home to school successfully. • Get your child into a sleep routine. According to the National Sleep Foundation, children ages 6-13 require between 9 and 11 hours of sleep per night and teenagers require between 8 and 10 hours of sleep. However, research indicates that most children

and teens are not getting enough sleep – about an hour less sleep each night than they did 30 years ago. The pervasive distractions of video games, television, and computers all play a role. Sleep deprivation can adversely affect cognitive skills and academic performance. For this reason, it is important to keep electronic devices out of the room during bedtime.

It’s never too late to spend more time together If you are wondering where you should start if you feel you are not spending enough quality time together as a family, begin with the family meal. Keep cell phones and any other electronic gadgets away from the dinner table so you can start conversations that you would like to, or need to have with your child. Children will not, and do not, forget meaningful conversations and quality time spent together with family. w Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids…Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields. www. douglashaddad.com

6-30-15

COPING

with the life you never imagined by Tracy Felix

I (kind of) knew what I was in for

While I was pregnant, I knew other people that were pregnant, too. I knew that our life would be so much different than theirs; that ours would be filled with hospital stays and hardship and that we would be dealing with a system that we had no idea how to navigate. I knew that we might not ever be a happy family of three, because our son has had so many issues and that the doctors might not be able to fix them all. I (kind of ) knew what we were in for and it made me sad. It made me angry. Why us? Why now? We didn’t ask for this life. We didn’t know anything about this life. We were first time parents and now we had to deal with this very complex child on top of it! I know that there is a plan for our lives, but, I wanted to get “clued in” on what it was. I started to think about the life we would

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never have and I would get depressed. We would always have to deal with cords and tubes. Everyday things like going to the grocery store seemed like an imposable task. We could never just plop him into a cart and continue on. What about family gatherings? Our house wasn’t big enough and carting all the equipment took too much time and effort. What about going on a date? Who would care for him? Who would have the knowledge or feel comfortable enough to be left alone with him? There were so many questions and we didn’t have the answers to any of them. When we tried to come up with some it was exhausting and we came to the conclusion that it was better to just stay home. We didn’t go on dates. We didn’t go to weddings. We went shopping together, as a family, because neither of us felt comfortable enough to be alone with him. We missed out on a lot of things and ended up secluding ourselves from family and friends.

We still don’t have everything figured out

Life was hard for a while, but we knew we didn’t want to stay that way. We had a friend sew some straps into a backpack so we could carry equipment and cords. We found a few people that were willing to learn what he needed and how to care for him (that already had at least CNA training) and we went on a 2-hour date! We got a stroller, and eventually a wheelchair, for him so we could go places. We had great people that showed us how to navigate the special needs and government systems. We have gotten to know a few other families that are

image courtesy our Facebook Friends

s I look at my son I see a miracle. I see a little boy that has been defying all odds from the moment he was born. I see a boy that has fought so many battles in his life and has overcome most of them with a smile on his face and love in his heart. That little boy saved my life (literally- because of him we discovered my thyroid cancer and doctors were able to remove it). He has taught me more about living and fighting then I ever thought possible. But, it wasn’t always that way. My husband and I knew that he was going to be disabled while I was still pregnant; we just didn’t know how bad it would be. We prepared as best as we could and got started on paperwork for him to start getting SSI (Medicaid) benefits as soon as possible. I quit my job to take care of him and we turned our house into a medical supply warehouse when he finally came home.

advice real life dealing with some of the same issues that we are. Life is not perfect and we still don’t have everything figured out. As he gets bigger we are forced to find new ways to do things. I still think about how life would be different if he was like every other kid, but I don’t get so depressed now. I don’t compare him to other kids because I know he is special in his own way and love him more because of it. I hope you can get to a place where you are happy. It doesn’t take a special person to raise a special needs kid. It just takes a bit of “thinking outside the box” and determination. w

Here are some resources for you to start with: VARIETY is a charity that helps connect families together by offering free (or low cost) activities for families to do. http://www.usvariety.org SHARED ABILITIES A community where you can connect with other people with the same diagnosis and can get tips on all sorts of issues. http://www. sharedabilities.com

GLOBAL GENES If you have a rare disease this site may help you connect with others that have the same thing. http://globalgenes.org FEEDING TUBE AWARENESS FOUNDATION Feeding tubes are pretty common for special needs people and if you are faced with getting one, they may be able to offer support or advice. http://www.feedingtubeawareness.com DISABILITY BENEFITS-SOCIAL SECURITY This is the direct link to apply for disability within your state. http://www.ssa.gov/disability

Tracy Felix Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her at www.xlinked1.blogspot.com and www. facebook.com/xlinked1

Avoid

M L E H W R E these OVwith

essential strategies by Suzanne Askham

hen my son, Tim, was one day old, I looked down at him in my arms and felt petrified. He was tiny and helpless. I wondered how I’d ever cope. It’s normal for any new parent to worry, but, when your baby has an array of health and developmental issues, the fear is magnified. That was 19 years ago. My baby grew up; along the way he’s struggled with a host of physical disabilities and with learning delays to match. He’s a SWAN (Syndrome Without A Name). He needs supplementary oxygen and extra help with his breathing at night. But, he does he lead a full, active life. He’s studying at an outstanding college, he smiles a lot, he has friends and he has fun What I want to share with you are seven strategies that I developed to deal with overwhelm.

1) Remember to breathe. When we get worried, we take quick, shallow breaths that do a poor job of oxygenating our brains and muscles. We get short of breath, which adds to our feeling of suppressed panic. Our child picks up on the uncomfortable atmosphere. Their breathing may also become fast and shallow. Therefore, remember to breathe. Here is a quick exercise that you can do any time: breathe in “Love” and breathe out, “Peace”. Say these words silently 18

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to yourself as you continue to breathe in and out. Your breathing will naturally slow down to a comfortable, healthy pace.

2) Visualize your child happy, healthy and well. Give yourself a regular time each day to do this – perhaps when you’re sitting by your child as they go to sleep at night. Picture him or her, radiant with good health. Imagine this in vivid detail: pink, healthy color in their cheeks, a happy smile, strong limbs. Imagine it even if you don’t believe it. Say it or sing it to your child, like a lullaby: “You are happy, you are healthy, you are well….”

Give yourself rest. I used to be tempted to finish

jobs late into the night. But, one day a wise friend told me that I had to look after myself, in order to look after others. I finally got it. When you rest, your own native wisdom flourishes. It’s amazing how solutions to problems emerge spontaneously after a nap.

4) Find your support group. The other babies in our wonderful local group did not have special needs. But Tim and I always felt included. We both enjoyed the feeling that we could have a good time, without having to worry about the next medical test. Nowadays there’s plentiful on-line support, with opportunities to meet like-minded people locally. You can also find, or start your own, local group through Meetup.

The Family Hope Center presents

5) Nurture your relationships. Tim’s dad and I almost broke up during the early months. We opted for relationship counseling through Relate. Gradually, we learned how to listen to one another without judgment, and how to support each other in developing our own interests. We still argue sometimes. But this verse by the mystical poet Rumi sums it up: “Out beyond ideas of wrongdoing and rightdoing there is a field. I’ll meet you there.” The same applies to all your loved ones: your other children; your parents, and parents-in-law. Find ways to be present for them. Find ways to accept help from them. Above all, appreciate them.

6) Value your child’s team. Dame Kelly Holmes, the British medium-distance athlete who won two gold medals at the 2004 Summer Olympics, says she couldn’t have done it without putting together a team of experts – including a coach, physio and doctor – to help her reach her goals. What works for an Olympian also works for you and me. My son’s team has included doctors, teachers, social workers, therapists, an osteopath and even, on one occasion, a great lawyer. In a talk I attended, Dame Kelly confessed that her team also included two angels who, it seemed to her, actually held her up by the shoulders as she zoomed to the winning line. I love that sense of trust in a higher power. I hope your team also includes regular help from the divine – whatever that means to you.

7) Enjoy the present moment. The past is over. The future has not happened. But this moment now, when you can cuddle your child, or talk to your partner, or have a laugh with your other children… these moments are real. Enjoy the simple pleasures contained in the present moment. They are life itself. . w Suzanne Askham is a mother of two (one with complex special needs) and a meditation facilitator. She is the author of ‘Coping When Your Child Has Special Needs’ and is currently writing ‘This One is Special’ – her son’s story. Join the conversation at suzanneaskham.com

How to Help Your Child with Special Needs “I can see my son doing things I never dreamed of. Thank you!” If your child has been given the diagnosis of: • Autism • ADD/ADHD • Cerebral Palsy • Epilepsy • Developmental Delay • Down Syndrome Vinnicius and Tatiana P., Connecticut • Dyslexia • or other neurodevelopmental concerns,

FHC is here to help. The Family Hope Center Team has trained thousands of parents from around the world to understand the root causes of their child’s neurological challenges and how to significantly improve their child. This interactive, integrative and practical 3-day Parent Training Conference will teach you how the brain is really ‘wired’ and will give you significant tools and an organized approach to help your child progress.

2 Minutes with Click HERE to watch.

Learn more about this unique and proactive approach at an upcoming Parent Training Program “How to Help Your Child with Special Needs” Call (610) 397-1737 for location and registration information or visit:

FamilyHopeCenter.com

parentingspecialneeds.org

ÂŠ 2011 Fox Broadcasting Company

Lauren Potter - American Actress As an actress, Lauren has appeared on the hit show, Glee, but she is also an advisor to the White House for People with Intellectual Disabilities and appointed by President Obama. Lauren was born with Down Syndrome.

no limits! Support Different-Ability Awareness

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Super Dads Making A Difference This Fatherâ&#x20AC;&#x2122;s Day we thought we would feature three very special Dads:

Stephen Beck,

Rick Hodges and Phil Pedlikin

our Super Dadvocates! We asked for nominations for this yearâ&#x20AC;&#x2122;s Dadvocates. Rick and Phil nominated their friend and colleague, Stephen, who was instrumental in getting the ABLE Act passed into law. After reading their stories, we felt it deserving that all three men be honored. We think their stories of commitment and passion to help others deserves some special attention.

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Stephen E. Beck, Jr.

t is said that some of the best solutions originate and come from the people; real people with great ideas. Stephen saw a way to make the world a better place and he acted upon it. He fought for, and championed, a way to help others. What he left behind will live forever. With the assistance of his widow, Catherine, we would like for you to meet a man whose work will benefit so many in our community.

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PSN: Please tell us about yourself, your family and your child: CB: Our daughter, Mariae Rose, is a typical teenager. She intends to go to college in the fall and graduate with a degree in nursing. Since the day Mariae Rose was born we have saved what we could to support this goal. In contrast, when our daughter, Natalie, was born we were advised not to create any type of savings in her name. Because Natalie has Down syndrome, she had been tied to a support system that forced individuals with disabilities into a life of poverty in order to remain eligible for federal and state assistance programs. If you were to ask Natalie, she would tell you that after graduation from Saint John Paul the Great High School she is going to college at George Mason Universityâ&#x20AC;&#x2122;s Life Program. Prior to this Act we could not save funds to help her achieve this goal. The ABLE Act (Achieving a Better Life Experience:ABLE) Act allows families to save for the education now widely available in post-secondary schools for individuals with disabilities. These programs will assist Natalie to obtain both the job and life skills she will need to be more self-sufficient. This Act is not going to solve all of the financial problems of the disability community, but it does provide a major step forward. It allows my family to save money to take care of Natalie, as we have saved money to take care of Mariae Rose.

PSN: Please tell us Stephen’s story ; what you would like the readers to know about him? CB: Stephen was first and foremost a Father. Stephen was not a professional lobbyist. He was a Dad, happily volunteering and working hard to correct an injustice. He volunteered his time over the (almost) ten years it took to pass this Act. Steve did more than simply voice his opinion; he always framed things in a way that everyone could understand. He inspired others with a quiet confidence. He did not do this alone, but enlisted the help of other self-advocates and their families. He rallied the support of our country’s advocacy groups for individuals with disabilities; groups like Autism Speaks and the National Disability Institute. PSN: What made him decide to work so diligently to ensure the Down syndrome community (and special needs community, in general) had this “opportunity/savings account” on a national level? CB: Stephen loved his country. This bill was named after Stephen not only for the work that he did to secure its passage, but also as an acknowledgment of what one person can accomplish. It is symbolic of what our country stands for, and symbolizes how one person can make a difference. This is not so much the Stephen E. Beck, Jr. Act but a Father’s Act, named for a father who stood up for what he believed should happen in our country. Steve saw an inequity in the way that he could save for the future of his two daughters. He used the resources available to him as their father to make a change, and correct a disparity. If not for the gift of our two wonderful daughters, Stephen would never have realized the inequities in our ability to invest in the future of our two children.

Just for about Stephen

fun

What did Stephen do for fun or relaxation? He swam at least 5 days a week. He also loved sports and politics. What super power do you think he would have liked to have? The power to influence Congress and the President to work together (seriously). Favorite technology? His phone DId he have a favorite Sport? Hockey and football. He was a season ticket holder for the Washington Capitals and a lifetime Redskins fan. What two words would he have used to describe your child? Passionate and

PSN: Please share one thing that Stephen learned that has made a big difference in your life (as well as in his life)? CB: Your time is your most valuable resource. Use it wisely. PSN: How would you describe his legacy?

Mariae Rose (left); Natalie (right)

CB: Parents have the power to create a change. This is our family’s story. In the future, other fathers or mothers, will come to the Nation’s Capitol with a passion for fairness and the dream of making a better life for their loved ones. Capitol Hill listened to Stephen’s stories and took action. There are other families and self-advocates who have more stories to share. There is more legislation that must be passed. The Stephen E. Beck Jr. ABLE Act is just the beginning of an effort to allow individuals with challenges to have the same chance to live as fruitful a life as all other citizens in the USA. MAY/JUN 2015

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Rick Hodges

very great idea needs a “flash of genius”..... the spark that starts it all. The Able Act (or rather what would become the Able Act) began as an idea from our second Dadvocate, Rick. A chance meeting, coupled with men who happened to be determined individuals, put three men on a path that will benefit so many for years to come. Let’s meet (and learn about) Rick...

PSN: Please share with us briefly about your family. RH: I live in Arlington, Va., with my wife, Elenor, and daughters Audrey and Brita. Audrey, 14, has Down syndrome and Brita is 9. I’m a writer and editor and Elenor runs a local environmental non-profit. Audrey is in her last year of middle school, where she sings in the chorus and plays taiko (Japanese drums). Brita goes to a Spanish immersion school and plays soccer, cello and takes dance. PSN: Please tell us your story. RH: My dad once ran group homes for people with intellectual disabilities so it seemed like fate that we had a child with Down syndrome. Her diagnosis led me to learn more about it and advocate for her. It started by substitute teaching in Arlington schools (in special ed classes) and

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then joining the local government board that oversees disability services. I also was on the board of The Arc of Northern Virginia. I found a way to use writing for advocacy when I wrote a play, “Three Generations of Imbeciles,” inspired by the true story of the involuntary sterilization of people with disabilities imposed by the state of Virginia in the 1920s through 1970s. In my play, though, the characters overcome sterilization and find a way to become parents anyway, with a happy and triumphant ending. Maybe one of your readers is in the theatre and would like to stage it! (For more information, see http:// rickhodges.weebly.com/three-generations-of-imbeciles. html)

PSN: Where were you when you came up with the idea for the ABLE ACT? How did you come up with the idea for the ABLE ACT? RH: I came up with the idea that led to the ABLE Act when I went to a financial planning seminar at the Arlington County Library when Audrey was a toddler. I knew that kids with Down syndrome go to college sometimes, and even if Audrey didn’t, she would need me to save some money for whatever her needs turned out to be. It soon became clear to me in that seminar that the financial planners had lots of

options for people with typical lives, but Audrey’s future didn’t quite fit. There were accounts for college, accounts for working and retiring—but no account for people with different expectations, or uncertain ones. I took the idea to the Down Syndrome Association of Northern Virginia, where Phil Pedlikin was chair of the government affairs committee at the time, and he ran with it. We later learned that other people had come up with the same idea before I did, so we knew we were on to something. We succeeded in moving the idea forward because of the grassroots strategy that Phil designed. It required patience, tenacity and work—something we’re used to going through anyway to get things for our kids. Above all, it was about Steve Beck’s work. PSN: What are your hopes for the future? RH: When I explain the potential of people with Down syndrome or other conditions, especially to new, scared parents, I like to cite some of the amazing people with DS I’ve met or heard of, for example: the guy who plays five musical instruments, or who owns his own restaurant, or the woman who swam the English Channel, or graduated from college, or had an acting career. Perhaps Audrey will be on that list someday, somehow. But, she’s already done plenty for me to brag about and she’s only 14! PSN: What is one of the most important lessons you’ve learned during this advocating journey?

Just for about Rick

fun

What do you do for fun or relaxation? A fun day for me is building something new in my backyard, like a deck. Also grilling and drinking beer on a deck I just built. I also enjoy cycling when I can.. What super power would you have? I’d like to fly, but not in coach! Favorite technology? Music mixing software. Do you have favorite Sport? My favorite “watching sport” is football; my favorite “doing sport” is cycling. Use two words to describe your child with special needs? Talking Tornado. She also loves to spin herself very fast on a pair of gymnastic rings I hung from the ceiling while listening to her iPod

How did you learn it? I’ve learned that people in the disability community, whether those with disabilities or their families and friends working to help them, are the tortoises to everyone else’s hares. Steve Beck was a great example. He had zero lobbying experience, but he jumped in, kept going, learned what he needed to learn and never gave up. It’s not much different from how the people we love with disabilities find success. To read more about how the Stephen E. Beck Jr. ABLE Act ABLE Act may benefit your child >>>

The Hodges (left to right): Brita, Elenor, Audrey and Rick MAY/JUN 2015

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Phil Pedlikin

very group should have a “mastermind”. Phil happened to be that “guy”. He sensed that this idea could gain traction, and he set in motion a direction that would enable the working pieces and parts to achieve some momentum and get proper notice. Together, these three Dadvocates have truly made a difference... PSN: Phil, please give us a brief snapshot about you, your family and your child. PP: I am the proud father of Ethan,16, who has Down Syndrome. I have been married to Adrianne for 20 years and have two other children: Lena, 18, a freshman at Meredith College and Caleb,12. We have lived in Vienna, Va. (in the same house) for those 20 years. I am getting my Ph.D. in Disability Policy at George Mason University. I am Vice President of a small IT consulting firm focused on SuccessFactors implementations. I was president of the Down Syndrome Association of Virginia, treasurer of the Arc of Northern Virginia, and have served on several boards and committees related to disabilities in and around Fairfax County, Va. PSN: Please tell us your story...what you would like the readers to know about you. PP: I am just a regular guy who listened when Rick Hodges came forward with his idea. When my

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son was three, my wife told me the world would not be good enough for him and that I needed to go change it. I asked her if she understood what she was authorizing me to do because I don’t “half” anything, I would be “all in”. Since then, I have been working to help individuals with intellectual disabilities of all ages. I helped a great Down Syndrome Association Board of Northern Virginia build their organization into a prominent part of the community in the area. I also helped build the financial infrastructure of the Arc of Northern Virginia so it could expand its services and improve its organization. I have helped a wide range of families with school, financial and other issues. I am writing my dissertation about the closing of institutions for the intellectually disabled. I am always searching for the next way to do my part. PSN: We heard that you were the “mastermind” behind getting the ABLE Act off the ground. What were some of the initial challenges and when did you feel you were gaining traction? PP: When we started, many people in the disability community told us that the ABLE Act could not “go anywhere”. There was no “political possibility” for such a bill and that many would object to letting people who received Medicaid (and other benefits) have money. They said they would not join in the effort because it was doomed from the start. We were

just a bunch of people who had limited political connections but a viable idea and strategy; we were not a central part of the political disability community. We knew, however, that we were on to something when the only real question that Rep. Ander Crenshaw’s staff (he was our first and primary sponsor in Congress) asked was “are you sure this doesn’t already exist?” He was stunned that such a “common-sense idea” hadn’t already been enacted by Congress. We moved quickly to get members of the Ways and Means Committee to join the bill and when we did, we were off and running. Between Rep. Crenshaw’s participation and then gaining cosponsors of the bill from all parts of the political spectrum (and all parts of the country), we knew we were gaining traction. PSN: What is one of the most important lessons you’ve learned during this advocating journey? How did you learn it? PP: That the system can work. We believed that our idea would transcend politics, and it did. The disability community traditionally went to a certain small set of congressional advocates for help. We decided, however, to go to a range of junior members of Congress, none of them in the congressional leadership, so we could build momentum and eliminate the possibility that we would get caught up in partisan bickering. As we started to approach members of Congress (from the most liberal to the most conservative), we had

Just for about Phil

fun

What do you do for fun or relaxation? Travel with Ethan. Run. Try new foods. Coffee or Tea? Coffee. What super power would you have? Time Travel Favorite technology? Yelp Do you have favorite Sport? College Basketball or Baseball Use two words to describe your child with special needs? The best…there is no better person in the world.

to adjust our message some, but we were highly successful at convincing members that this was just a good idea. We learned from doing, we learned from meetings and from approaching members from all over the political spectrum. PSN: Do you have any other goals with regard to the special needs community? PP: Unfortunately, we have too many goals. The range of housing options is not adequate, there are not nearly enough job opportunities, and there are still far too many institutions open in America. They are still in the process of closing institutions here in Virginia. I could list more. As my wife said, “America is still not good enough to its citizens with intellectual disabilities”. PSN: Any advice/tips for others who wish to present new legislation?

clockwise from top: Phil, Lena, Ethan, Caleb and Adrianne

PP: Stay above the fray. Do not get into the “political weeds”. Try to find a way to get people involved from all parts of the political spectrum. Find friends that you never thought would be your friends. They are out there. w MAY/JUN 2015

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mission

: E L B I POSS

SucceSSful family VacationS by Kimberli Breen, Victoria McMullen, & Meme Hiene-

acations can be wonderful times, providing opportunities for family members to strengthen their relationships through shared experiences. Vacations can also be challenging times for families that include children with special needs. In this article, we will share tactics and maneuvers to make family vacations more enjoyable for everyone. We will provide ideas through a road trip and family reunion (R&R) example for Liam and family, but the following steps can be used to plan any vacation.

Mission Possible.

Determine what you would like to do as a family during your vacation. Be positive, outlining the goals would you would like to achieve if everything goes as well as possible. R&R: Goals for the Road Trip to the Reunion for Liam and Family Travel through four states to spend time with extended family Enjoy the ride, rather than just making good time on the trip Create positive memories and further strengthen relationships

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Reconnaissance.

Gather as much information possible about the upcoming vacation to facilitate action planning. This reconnaissance can be done by considering previous experiences with similar vacations, asking other people who will be present or have traveled to the same place, or visiting sites on the internet to see descriptions, maps, and pictures. Ask yourself the following questions: â&#x20AC;˘ When: On what dates will we leave and return? How long will we be gone? What are the timelines for each of the activities? How much down time will there be? Image courtesy our Facebook Friends

• Where: What places will we be visiting? What forms of transportation will we use? Where will we sleep and eat? What is the environment like in each of the places?

also may involve practicing skills with your child that will allow him or her to participate fully in activities, interact appropriately, and cope with particularly challenging circumstances.

• Who: With whom will we be interacting? Will the people be familiar or unfamiliar? What are their characteristics? How many people will be present in each activity?

R&R: Stock car with various toys, games, videos, and equipment for playing at the rest stops. Plan games and sing along activities, ensuring a variety of options. Pack snacks and picnic items for trip so dining in restaurants is not always necessary. Arrange for hotels with swimming pools and separate sleeping area. Investigate handicapped/disabled parking and facilities at park. Ask Grandma and Aunt Judy to stock up on preferred foods and to keep sweets out of sight, as well as to keep pets separate. Encourage familiar relatives to serve as “guides”, encouraging others to follow Liam’s lead and limit questions. Practice greeting and conversational exchanges. Post the itinerary on the wall calendar, reviewing it with Liam.

• What: In what types of activities will we be participating? For example, will they be indoor or outdoor? Active or passive?

Plan of Attack:

Make arrangements and organize accommodations to make each activity as successful as possible. Consider the resources and potential risks associated with each setting. Your plan of attack may involve creative scheduling (e.g., alternating boring activities with those that are more enjoyable, establishing time limits based on the child’s needs), packing familiar and preferred items, requesting environmental modifications, and orienting the people with whom you will be coming in contact. It

Strategic Deployment.

When the vacation is underway, try to stick to your plan, but also be prepared to modify your approach based on the circumstances. You may have to engage in ongoing problem solving as new

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situations arise – expect the unexpected. Provide support by explaining upcoming activities and expectations (e.g., using pictures or gestures if needed) and rewarding your child’s successes with praise and special activities or treats. R&R: Make sure Liam has a healthy breakfast and can use the potty each morning. Drive no more than 6 hours per day, taking brief breaks approximately every 90 minutes. Switch between activities every 15-20 minutes while in car and “get physical” at rest stops. Use social stories to prepare for hotels, restaurants, family homes, and museum. Prompt relatives how to interact positively with Liam. Arrange for stable, comfortable seating with Liam’s back to the crowd to allow for personal space.

Regrouping or Retreating.

Even when planning is flawless, difficulties can arise during vacations that require a major shift in approach or retreat from the circumstances. It is important to have a back-up plan if your child (or you) gets stressed, making fun impossible. In these situations, help your child to signal that the situation is too hard with a word or gesture and allow a break from the situation.

R&R: Teach Liam to say, “I’m tired” or “I’m bored” if he appears stressed and respond to body language, changing activities or allowing him an opportunity to get away from groups of people. Avoid loud noises such as yelling and fireworks. Change clothes quickly following water play (since Liam hates being in wet clothes). Delay driving when raining heavily.

Declaring Victory.

Following each activity during the vacation, identify what went well – taking stock in your successful experiences. At the end of the vacation, celebrate, knowing that you have created more positive memories for your family. Document successes with pictures for future use in building language and anticipating additional successful trips. w Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as

a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years. Image courtesy our Facebook Friends

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Mommyâ&#x20AC;&#x2122;s Timeout : T ake a time out and use V isualization Meditation to relax. Imagine yourself here catching the rainbow after a rainy day. Enjoy the beautiful colors in nature. Take a couple of deep breaths and begin to let go of any stress. Boom Lake , Alberta, Canada Photos courtesy of ÂŠdavebloggs /flicker.com Music courtesy Ryan Judd www.TheRhythmTree.com

breathing space your life

Beyond the IEP Team:

Tips for Parent Participation at School

by Amanda Morin

W READ: 13 Ways a Parent Teacher Association Can Help a Student with Special Needs >>

Parenting SPecial needS.org MAY/JUN 2015 SPecial needS.org 3448Parenting

hen you have a child with a disability, you’re often very involved with his education. You spend time on the phone with teachers, you’re an active participant in the IEP process and you support your child’s learning at home. But it can be easy to feel isolated when it seems like all your participation at school is centered on your child’s needs. So how can you get involved with the school and other parents without feeling as if you’re getting in the way of your child’s day-to-day education? Here are six ways to start.

Join the Parent-Teacher Association.

Most schools have a PTA or PTO that meets at least once a month. And they’re often at the helm of planning events for the school. In joining the PTA, you not only have the opportunity to meet new people and know what’s going on in the whole school, you also have a great opportunity to advocate for kids with special needs. You may know what accommodations need to be in place at a school dance or book fair to make sure all kids are included, but if it’s not the experience of the rest of the PTA parents, they may not. You can make sure that the needs of kids with disabilities are part of the conversation.

Go to school board meetings.

While it’s true that school board meetings may not be the most interesting way to spend an evening, they’re open to the public for a reason. The school board talks about issues that affect students, including your child. Keep an eye on the issues that are coming up for vote or discussion— even at budget meetings it can help to have a representative voice of a parent of a child in special education. Better yet, gather a group of like-minded parents to go with you. It brings a bigger voice to the meeting and gives you an opportunity to get to know parents who understand your circumstances.

Offer up some behind-the scenes time.

For some kids, having a parent volunteer in the classroom is more disruptive than helpful, but that doesn’t mean you can’t still volunteer. Many schools are happy to have parent volunteers to help in the office or work in the library. And teachers frequently need parents to help behind the scenes with things like photocopying, preparing materials for projects or maybe even writing a class newsletter. Ask your child’s teacher if there’s anything you can do to make her job easier so she can focus on teaching while she’s in the classroom.

Offer up your talents.

You might not have time to offer, but you most likely have talent! Your talent and skills can come in handy. For example, if you have a way with gardening, think about offering to plant a classroom garden and help kids learn how to take care of it. If you’re artistic, maybe you can help create bulletin boards or artwork displays across the school. And don’t underestimate the importance of being handy. There are always bookshelves or other classroom items that need to be built or fixed.

Organize or help with an afterschool club.

There are often more interests to explore than there are faculty advisors to help kids explore them. What is your child passionate about? More than likely, other kids are interested in the same thing. You can start a club at the school (or if that isn’t an option, check with the public library or community center). Or, find an existing club and offer to work as an assistant leader. It’s a great way for both you and your child to participate and gain a sense of community belonging.

Attend school events.

Not all parents have time to volunteer during the day or afterschool—and that’s OK. If you’re not able to do those things, you can participate simply by bringing your child to the school play, math night or the ice cream social. It gives you all the chance to participate in the school community in a casual way. Research shows that parent involvement helps with student achievement, but it also can help you feel more connected to your child’s school.w

Amanda Morin, is an early intervention specialist, education writer, special education advocate and mother of two children with special needs. Her latest book, The Everything Parent’s Guide to Special Education, aims to demystify the special education process and empower parents.

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Travel Tips Making Fun Memories by Julie Jones

ooking a vacation should be an exciting time for families, filled with anticipation of the fun times and memories that will be created. Often, when a family travels with a child with special needs, the excitement is replaced with trepidation and anxiety. When traveling with my son BJ who has cerebral palsy, I have experienced both feelings. But, I have learned that with planning and research, wonderful family memories can be made.

We have gained travel confidence over the years after traveling to destinations within an easy drive of home. This allowed us to work out what equipment was essential without worrying about airline baggage limits. After we had done local holidays for some time we started flying domestically and finally took the plunge and flew internationally. We have had the most amazing experiences (both locally and overseas) and vacations have been an important part of our family bond. Day-to-day we are busy with work, therapy, school and appointments. Vacations are a time of coming together and just being a family without distractions. Having a child with special needs is demanding on the family dynamics and it is important to take time out and have fun. Last year we undertook our third vacation as a family to the U.S. It was three weeks of travel which started with a 15 hour flight. BJ has cerebral palsy, uses a wheelchair and is non-verbal. He also likes to be on-the-go constantly so sitting for that length of time on a plane is probably one of the biggest challenges we face traveling. Once we arrive at our destination he is a pleasure to travel with because he enjoys meeting people and the stimulation of new experiences.

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WANT SMOOTH TRAVEL?

COMMUNICATE WELL TO EVERYONE! Traveling with a son with special needs has emphasized to me the importance of good communication with all service providers. This makes for much smoother travels. I spoke at length with the airline’s special handling department regarding our requirements. Airlines need specific information when booking with a wheelchair and it saves time and multiple phone calls if you can have it at the ready. They usually need to know dimensions of the wheelchair; whether it is manual or electric; the battery type for electric chairs and whether it is a foldable manual chair. I requested that BJ use his wheelchair right up until the aircraft door, when it was then taken and put in the cargo hold. Since this was a long-haul flight to the U.S. from Australia, we researched and booked an airline that had a disabled restroom on board. These restrooms are significantly larger than a regular airline restroom and allow enough room (just) for a parent or carer to assist. In the past we have always used a “hire car” from arrival but our confidence grows the more we travel and on our last trip we used regular shuttle services. I found that Super Shuttle has a wheelchair accessible service in both Los Angeles and New York. Once again, I encourage clear communication as to your requirements. BJ’s wheelchair does not fold and this is important information to provide to ensure a suitable vehicle arrives for pick up. After a long flight we found it more convenient to use the shuttle service.

As a child, I traveled extensively with my family (and again later as a travel consultant), but a visit to New York had eluded me until last year. To say I was thrilled to visit New York is an understatement. We booked into the Hotel Beacon for an eight night stay. I chose this hotel for its location and accessibility. We find it better to invest a little more in accommodation in a good location if it allows easy access to local attractions when traveling with a wheelchair. The Hotel Beacon is a three block walk from Central Park and has a wheelchair accessible subway station a short distance away. It also has a grocery store opposite it, which saved us money because we could self-cater some meals. The hotel has wheelchair accessible accommodation and proved a convenient and comfortable base for our daily sightseeing. When traveling with children, I like to mix visiting tourist attractions with experiences that may not be featured in typical tourist brochures. This itinerary plan made our stay in New York special for all of us.

The Statue of Liberty is probably one of the most recognizable landmarks around the world and having seen it in movies and television shows since I was a child, I was not content to just see it from a cruise. Being up close to Lady Liberty was a highlight of our visit to New York. It is hard to appreciate the

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statue’s size and grandeur without being on Liberty Island. The island itself is wheelchair accessible but what I found particularly exciting was the option of an accessible visit to the pedestal level of the Statue. Access inside the Statue of Liberty is an additional cost and requires pre-booking. Included in this ticket price is a visit to the museum which gives an overview of the history of the Statue and the incredible logistics of gifting it to New York. The pedestal viewing area is narrow (better suited to manual wheelchairs) but allows wonderful views of the New York skyline.

High Tea at The Plaza Hotel - being big fans of the movie and book series, “Eloise at the Plaza”, by Kay Thompson, we were keen to experience the Eloise High Tea at The Plaza. It is wheelchair accessible and as Nanny from the series would say, “divine, divine, divine.” The Plaza Hotel’s foyer is adorned with crystal chandeliers and spectacular large, fragrant flower displays. Although not on the usual tourist list, it was something the whole family enjoyed. After the high tea we went to The Plaza’s Food Hall where we visited the very pink Eloise store. A must for every little girl or grown up who loves Eloise.

The Intrepid Air and Space Museum was a wonderful surprise. We have not experienced another museum with a display ship, not to mention an aircraft carrier, which is wheelchair accessible. This proved extremely educational as it was something BJ had never had the opportunity of doing before. The highlight of our visit was the Space Shuttle Enterprise exhibit which has a wheelchair accessible lift to allow close inspection and a great photo opportunity.

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Central Park was one of our favorite places in New York. We only managed to see a small corner of the park during our visit because the area it covers is so vast. We did a carriage ride through the park (we had to trust a street vendor with BJ’s wheelchair. I would recommend taking a bike chain if you plan on doing this), hired boats to sail in the lake, visited the John Lennon memorial and did lots of people watching. We found there are some uphill areas but, in general, it is easy to get around with a wheelchair.

The Top of the Rock Observation Deck – We visited both the Empire State Building and The Top of the Rock Observation Deck and although we enjoyed each one for different reasons, I would recommend Top of the Rock for the easiest wheelchair access. Large glass panels allow for unobstructed views of the city, including The Empire State Building. Visiting prior to sunset is a good time to see New York in many shades; daylight, watching the sunset and then wait to see the city come alive with twinkling lights as night falls.

Make Meaning – it is important to remember that children need some down time when traveling. My daughter, AJ, loves her craft and she particularly enjoyed stopping in at Make Meaning in New York. She chose to make soap (which was not the most logical craft to do when traveling) but there are a variety of activities children can choose from including ceramic painting, cake decorating and candle making. As adults it is tempting to drag children to every attraction available when visiting a new city but sometimes a bit of quiet, creative play is what they need. We visited Make Meaning on the Upper West Side and this location was fully wheelchair accessible. The staff was wonderful with both our children and it was just around the corner from our hotel. There are many outlets throughout the U.S.

Ellens Stardust Diner was popular with our whole family. With a queue stretching around the corner it is definitely not a well-kept secret. The singing wait staff are the main attraction and for us, a unique experience. Many previous staff members have gone on to perform on Broadway and it is no wonder because the quality of the singing is top notch. The diner is noisy and not for anyone who is intolerant of a rowdy evening. We joined another family at a table and it proved a lovely opportunity to swap stories of our hometowns and the differences between the U.S and Australian school system.

Walking the Brooklyn Bridge is free and accessible. So, one afternoon, we caught the ferry to Brooklyn, had a pizza from Grimaldis and ice cream from the Brooklyn ice creamery and walked back to the city as the sun was setting. It was a perfect evening; the kids were happy with pizza and ice cream and we all loved the walk across the bridge back to the city.

DO YOUR RESEARCH: ASK YOUR QUESTIONS Getting around New York was easy and we tried all modes of transport. We preferred the subway system for its speed and efficiency, but not all subway stops are wheelchair accessible and we did find lifts (escalators/elevators) out of order on occasion. If you are more cautious, the bus system is wheelchair accessible, and although slower due to traffic congestion, it is easy to use and reliable. We also used the cabs in the city and hailing an accessible cab took us about the same amount of time as it took me to hail a ‘regular cab’ on another outing without the family. New York was our dream destination but whether you travel close to home, or further afield, research your choice and ensure it will provide a good foundation for your family’s vacation. Ask lots of questions of hotels, airlines and tour providers and clearly identify what you need for them to provide. Rarely does a person who is not in your position truly understand your requirements. Do not assume they do. Be clear, but realistic. w Julie Jones is the creator of Have Wheelchair Will Travel (www. havewheelchairwilltravel.net) where she combines her skills as an ex travel consultant with her life and experiences as a Mom to her son BJ who has Cerebral Palsy. www.havewheelchairwilltravel.net

lastly, vacation memories are precious, so have fun. MAY/JUN 2015

Parenting SPecial needS.org

trepr eneurs [Momtrepreneur] is an amalgam of a female business owner and a â&#x20AC;&#x153;momâ&#x20AC;? who is actively balancing the role of mom and the role of entrepreneur.

aising children is a tough enough job. Now, add a special needs child to the mix and it becomes an even greater task. We would like to shine a light on these six special momtreprenuers who have taken on the additional task of creating businesses that serve the special needs community. We applaud these special moms who are working to make a difference in our community.

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How wonderful it is that nobody need wait a single moment before starting to improve the world.” ~Anne Frank, writer

Annie Lachaud Company: ABR Canada Advanced Bio-mechanical Rehabilitation (ABR) is a home-based rehabilitation approach empowering the parents of children with special needs to attain a thriving and flourishing life.

Launched: 1999 Her family: I am the proud mother of Nicholas,18, who has severe Cerebral Palsy. Like many other parents, I started going from one therapy to another, desperately searching for the ‘miracle cure.’ I tried 17 different approaches within a 4 year period (both alternative and conventional therapies), until I met the inventor of Advanced Bio-mechanical Rehabilitation (ABR), Leonid Blyum. Her start up: Thrilled by the progress I was achieving with my son, I gave up my journalism career and opened the ABR Center for the Americas, located in Montreal, Canada (www. abrcanada.com). Today we offer this fantastic, innovative and research proven rehabilitation approach to more than 200 children with special needs from Montreal to Buenos Aires. We offer training sessions in Pennsylvania, Florida, California and Mexico with more satellite locations opening shortly. Initially, I started as a local Foundation in Nicolas’s name, but its popularity soon went beyond borders and its success has spread south across the United States, Mexico and South America! I feel so proud today to see so many children holding their head and torso better, gaining more flexibility, and being healthier and HAPPIER than ever before! The testimonials from ABR parents that see their child waking up to life is what nourishes me above all. Our principle, first and foremost, is to improve functional abilities in conjunction with better health and HAPPINESS. “Being before doing” is our motto. Being able to enjoy life like any other child;

being well enough in one’s own body to interact joyfully with parents and siblings. No forceful approach, no exhausting stimulation…just gentle, non-invasive, yet extremely efficient mechanical stimulation to improve your child’s structure, metabolism and awareness. A lady once told me, “It is so sad to think that he will never be able make anything of his life!’ I answered, “Even without the ability to speak or walk, Nicholas has accomplished more than many young men his age that already have a college degree! He opened a Rehabilitation Center that changes the lives of hundreds of children”! Nicolas also has a big brother, Louis-Philippe, who lovingly carries him around since Nicolas is too heavy for me now. He plays the guitar to him, sings him songs and watches hockey games with him. Nicolas, in spite of the severity of his case, shares in every family activity. I always jokingly present him as the PRESIDENT of the ABR Center! Without him, none of this would have ever been possible!w

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Victoria Boye Company: Missing Piece Awareness USA Missing Piece Awareness, Inc., trains, certifies, supports and promotes businesses to be autism-aware and accepting so they can effectively serve ALL customers.

Launched: 2012 Her start up: I am a momtrepreneur working to create social change to directly impact the day-to-day lives, and development, of individuals with autism and their families. Along with my two partners, Dianne Porter and Kathleen Grieve, Missing Piece Awareness, Inc., (www.missingpieceusa.com) trains, certifies, supports and promotes businesses to be autism-aware and accepting so they can effectively serve ALL customers. We partner with mainstream businesses and determine what accommodations, modifications and supports are necessary to make their business fully accessible and welcoming to individuals with autism and other disabilities. Dianne Porter and Kathleen Grieve have worked with families who have children with autism for a combined total of 50 years as a BCBA and special educator in homes, schools and the community. I am also a mother to a wonderful son, Emerson, who has autism. I was, initially, hesitant to bring him into the community and into businesses for fear of judgment, and more importantly, mistreatment, due to his behaviors. Dianne and Kathleen were acutely aware of this gap between a familyâ&#x20AC;&#x2122;s need to have their needs met and understood, and a businessâ&#x20AC;&#x2122;s ability to do so. They understood why parents like myself just found it easier to stay home sometimes.

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We train employees to UNDERSTAND autism through a series of hands-on, interactive training sessions and provide them with techniques, tools, strategies and the knowledge to successfully anticipate and meet the needs of individuals and their family with autism. We create social stories, picture schedules and parent primers customized to EACH business to help children with a quicker acclimation to new places and a heightened understanding of what to expect and what is expected of THEM. Finally, we communicate directly with the special needs community to inform them about the business at events such as resource fairs and special needs expos and through outreach to families, agencies, schools, parent organizations and media. We recognize the brilliance and hidden talents of our children, yet fear they will not be able to meet their full potential without being given the opportunity to fully participate in the community. All children deserve and require the freedom to be active in fully inclusive environments if they are to be able to maximize their potential as they get older and transition into the workforce. The next generation of adults need to be those who have grown up together (autistic individuals and non-autistic peers) and side by side. w

Ruth Beauchamp Company: Oranda Teaching and Learning Oranda works to nurture healthy and productive learning environments. With consulting and an online boutique of niche educational products, we feed teachers, schools and communities with ideas and resources to engage, connect and grow with each other and their children.

Launched: 2010 Her start up: I founded Oranda (www.oranda. com) after nearly 10 years of classroom teaching and more than 10 additional years of teaching “future teachers”. Throughout my career, I have visited thousands of classrooms where I experienced stressed-out teachers and students, disengaged students, and discouraged teachers. I was compelled to synthesize what I learned from my 20 plus years in education along with my interests in meeting the needs of diverse learners, mindfulness, active learning, neuroscience and occupational therapy. In 2010, I created recessitate as a resource for teachers and students to positively engage, connect and grow with each other. In one year, recessitate made its way into five continents. In 2015, the Focus

1-2-3 App arrived to bring the same great activities to ‘smart’ technology. As a parent and educator, I am passionate about empowering others with strategies that support their well-being in mind, body and spirit. I have two school age children and am married to a fellow educator. Why the name Oranda? The name was inspired by the proverb about teaching others to fish. The ‘oranda’ is a curious and common goldfish with a brainy-like mass on the top of its head. They thrive under the best conditions. Just like us! w

Tara Davenport-Miles Blogger: Building Up Baby One Mama’s home therapy ideas for her sweet baby girl.

Launched: 2014 Her family: My husband, Patrick, and I are the very proud parents to four wonderful children: Gavin, 14; Mallory, 11; Claire, 3 and Hugh 1. Our Claire is my inspiration to push myself to “do hard things” every day. Claire was born with an, as of yet, undiagnosed muscle disorder and cervical spine malformation. Shortly after her birth, I wrapped up my job as a Civil Engineer and my life began to revolve around her therapy. After a few years of regularly brainstorming creative ways to incorporate her therapy into

our daily lives, I decided to chronicle my home therapy ideas in a blog (www. buildingupbaby.com). My goal is to capture some of what we do at home with Claire in order to inspire other caregivers of special needs kids to find ways to use day-to-day activities and materials to help increase strength as well as fine and gross motor skills. In addition to therapy ideas, I’m starting to share books, devices, toys, and specialized equipment that I’ve come across and personally used. I am not using my blog to make any income or promote any specific product or service. It is, simply, my dream to use my blog as a forum for parents to get and share therapy ideas. w MAY/JUN 2015

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“

”

Life-fulfilling work is never about the money – when you feel true passion for something, you instinctively find ways to nurture it. ~Eileen Fisher, fashion designer

Pam DePalma Company: The Developmental Garden

Social Skills and Developmental Products Helping Children to Blossom

Launched: 2013 Her family: My husband, Chuck, and I have two beautiful children, Daniel (15) and Amy (9). We adopted both of our children, and they have been a true blessing in our lives. Daniel is a natural artist – he loves to draw, paint, create and LOVES to cook and hopes to be a chef! Amy is a natural athlete and excels in any sport she plays. She is a loving and nurturing young lady, and hopes to be either a veterinarian or a police officer. Her start up: Daniel has autism and we have learned so much more than we ever anticipated in our child-raising journey because of that! It has opened new doors, led to a move across the country, and the development of awesome social skills products! My business partner is a developmental specialist, and was working with my son with her prototype social skills game. We decided to produce the board game, as well as the apps, to help children all over the world with their social and emotional skills!

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The Give Me 5 games help children fit in with their peers in a way that does not feel forced, reenacting every day social situations to teach social cues, manners and proper responses to frustration, conflict and routine encounters.

This fun, non-competitive game covers 8 different types of social skills: awareness, nonverbal communication, verbal communication, emotional awareness, perspective taking, manners and understanding the big-picture. High 5s are given along the way to support the child’s positive social development and nurture their self-esteem.

The Give Me 5 Apps use video learning to analyze real-life social situations and facilitate social rule acquisition and deeper social understanding. Kids are active learners because they can personalize their profile, pick a virtual friend, try for bonus squares, and level up as they game their way to social success! The goal of the Give Me 5 Board Game and Apps, and The Developmental Garden (www. thedevelopmentalgarden.com), is to help children achieve better social understanding for longterm success in life! It is available through amazon. Com. The Give Me 5 Apps are available through itunes and googleplay. w

” Sue Wachta

Company: Go With The Flow Wellness Personal Health & Lifestyle Coach; working with women who are caring for a child with special needs.

Launched: 1999

Her family: I’m blessed to be the mother of a beautiful, 15-year-old daughter with special needs. She was born a 32-week “preemie” with many medical challenges. Medical visits, procedures, therapies, and interventions are commonplace in our life. This became our “normal”. While living this “new normal” (the special needs world), my daughter has taught me more about hope, persistence, strength, and love than I could ever have thought possible. Her start up: There’s a saying, “Everything happens for a reason”. So, I find myself thinking, “my daughter was sent to us for a reason, to teach us something, but darn if I know what it is.” The reason had better be a good! Today I have my answer ~ or at least one answer; this all was instrumental in deciding to receive training and become certified as an Integrative Nutrition Health Coach. I told my daughter, “I was training to be a Health Coach because I want to help other moms be happy

and healthy. I asked her to come up with a name for my practice and she said, “how about ‘go with the flow’ ”? Well, as soon asI heard that, it was a done deal (www. GoWithTheFlowWellness.com)! We all face challenges in our life and the stress of being a caregiver, particularly for your child, can negatively affect your health, marriage, and relationships. You can let your circumstances control your life, or you can take control. To be in control there is only one thing to do … accept that life “is what it is” and decide to live your life to the fullest in spite of those challenges. In other words, I decided to … Go With The Flow. w

★

Years

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Achievement Centers for Children

INTENSIVE THERAPY CLINIC Is your child achieving their greatest potential in traditional physical or occupational therapies? Schedule a no-cost consultation Call 440-250-2520 or email info@achievementctrs.org

Go to www.mobilitylifter.com to find a dealer near you or call us 615.530.1374

Two locations in Greater Cleveland Ohio achievementcenters.org/intensive MAY/JUN 2015

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PERSONVENTURED

by Amanda Morin

Entrepreneurship:

“There is no

greater thing you can do with your life and your work than follow your passions – in a way that serves the world and you.” ~ Sir Richard Branson 38 46

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V = Viable HOW DO YOU DEFINE VIABLE? Before anything else, let’s first explore the definition of the word “viable.” According to Webster’s Dictionary, vi·a·ble is defined as “capable of working successfully; feasible”. I like this one, “capable of living or of developing into a living thing.” Why address the meaning of viable? Notice please that a significant piece of one’s idea of viability is one’s idea of capacity, or in other words, your definition of “viability” will hinge heavily on whether or not you ‘assume’ someone is capable of something, or not. If you recall back in our first article we spoke about how “person-centered planning” assumes competence 100% of the time. Not sometimes, always!

Part III of IV | A Picasso Einstein Series

Concepts Persons with disabilities are in a constant struggle to demonstrate and reflect their capacities in a way we can understand. Notice I state, “in a way we can understand.” We believe that every person with a disability demonstrates capacity constantly, in times in the most micro of ways. But at times, we get so caught up in the world’s definition of capacity, or capable, or viable, that we miss the clear demonstrations of capacity from our loved ones.

ALWAYS ASSUME COMPETENCE! Remember the example once again from our first article of this 4-part series. How many of you would define a young man as ‘capable’ if you heard his family say that all they have ever seen him do independently is fold clothing. Unfortunately, the family themselves saw this activity as less than capable, and thus never entertained that their son could ever own his own business. Nonetheless, collecting, washing, drying and folding clothes for clients in their neighborhood was without a doubt, viable.

HOW DO YOU DEFINE “CAPABLE?” Let’s talk about real life case of testing the definition of ‘viable’ for a young girl with disabilities. Pavna, a young 23 year-old entrepreneur with quadriplegic cerebral

WE ENTREPR ENEURS

Viability must break the chains of ‘perceived’ capacity. If we measure the viability of a micro-enterprise for by Amanda Morin exclusively based on their a person with a disability, current ‘perceived’ capacity, then unfortunately, selfemployment will continue to be a non-viable venture for millions around the world. MAY/JUN 2015

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s t p e c n o C e l b a i V V= palsy, was featured on Ted Talks, as a co-designer of a language app for iPads. Now, what is remarkable about Pavna’s story is that since she was born, she had never moved or spoken. Ask yourself, “how would you measure “capacity” if you had met someone like that”? Do you know someone like that, and assume that capacity is at zero? We hope not… It took someone, by the name of Ajit Narayanan, to look beyond ‘perceived’ capacity, and in doing so, redefined the viability of Pavna’s involvement in the iPad project. Pavna has successfully completed secondary and post secondary schooling and with the help of her family & Ajit, became an entrepreneur.

How has Pavna been able to co-design an iPad app, start a company and be featured on Ted Talks? By demonstrating her capacity, with her eyes. In a relentless pursuit and affirmation of capacity, Pavna was able to communicate with her eyes, by being provided choices and choosing her choices by way of movement of her eyes. Soon, by way of her movements, she was able to demonstrate and communicate more indepth concepts and profound conversations. Soon, Pavna began working with Ajit in this iPad language design by participating via eye movements. Clearly, perceived capacity would have completely removed this opportunity from Pavna, being identified as non-viable. What a drastic change of direction her life would have taken, if those around her had stuck with the world’s definition of viable. If you view the Ted Talks episode featuring Pavna, you will hear an amazing quote from Daniel Webster, quoted as saying,

“ How Do I Get Started”

The Best Executive Summary WINS! The contest is now open for submissions of your executive summary. Entries MUST be received no later than August 10, 2015 (no exceptions please). Send submission to submit@parentingspecialneds.org, include “Entrepreneur” in the subject line.

CAN Do! their

WANTS?

their

IDEAS

Biz Start- Up Kit , which includes the following: • Logo design • Slogan • Flyer design • Biz card design 4-Part SERIES This 4- part series now open to submitting summaries during parts 3 and 4.

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L = Learn Entrepreneurship O = Objectives of “Person-Venture” Entrepreneurship

V = Viable Concepts E = Everyone Should be Educated on Entrepreneurship

”

“If all of my possessions were taken from me, with one exception, I would choose to keep the power of communication - For with it I regain all the rest.” Our loved ones with disabilities never, for a second, stop communicating. Never for a second can we stop searching for the meaning of all forms of communication, for if we do, not only is the viability of entrepreneurship void, we also teeter the very viability of their lives.

GAS IN THE TANK THEORY: For persons with disabilities, there are myriads of therapies, activities, skill development programs, and educational models all focused on building this well behaved, well-educated and ‘high-functioning’ (by the way, we dislike that term. Pavna is High Functioning) individual. Some are incredibly successful in doing so. But here is our concern. Without offering options that possess existing intrinsic motivation, driven by LOVE & passion, you now have this beautiful looking Mercedes, with no gas in the tank. What makes any venture, strategy or plan viable is the desire the person has, intrinsically to do it. Focus on existing hobbies, passions, loves, and then design a plan around THAT. You may not have a Mercedes, but you will have, without a doubt, forward movement.

ARE ALL CONCEPTS VIABLE? Short answer: NO. That is why as a best practice, when assisting a family pursue and plan a self-employment venture for their loved one with a disability, we require exploration and research of no less than three (3) business concepts. All business concepts should be based and designed as a person-ventured business (focused on the individual’s needs and long-term supports and on the pursuit of sustainable independence).

We summed up our comparison to a simple ABC measure. A = Access – how long does it take? How does it happen? What TimeZone is it in?

B = Barriers – internal/external barriers to the employment opportunity? C=Continuity – What is the turnover? Internal/ external barriers to sustainability? So, take a look at this chart and you judge viability for yourself

Numbers don’t lie! As we maneuver our way through many communities and organizations, we are often confronted with many stats on traditional employment that are applauded and supported. Granted, not everyone will be an entrepreneur. But really, what makes pursuing traditional employment any more viable than self-employment? We asked that question to ourselves, have continuously asked others and here is what we have found. NOV/DEC MAY/JUN 2014 2015

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PERSONVENTURED

by Amanda Morin

Entrepreneurship

How do you determine viability?

is a critical element to the sustainability piece of any venture. As difficult as it may be, parents do well to remember that they will one day, not be around.) • If the answer is, “I don’t know” or even “no”, then please do the following: o Ask the person what they love to do. If you already know, share with them stories about other individuals whom have done similar things and make money doing them. Show them photos, read articles, and have conversation with them to the extent possible (always assuming competence plays a huge role in this process), and allow the information to settle. o Do this consistently over the span of a few weeks. Let the idea settle within them. And then ask them again. Just as often as you encourage your loved one to find a job, is as often as you should offer selfemployment as another option.

Discover, explore, ask lots of questions, and most importantly don’t assume, ever, that someone can’t do something. They may not be able to do it now, but what lay in the future, no one can say for sure. Here are some good steps to take in exploring the viability of a business concept:

Ask the person with disabilities, if they would like to own their own business. • If the answer is “yes” then explore the following items: o What is the person’s likes, passions and/or hobbies? o How often, when and with whom does this person engage in hobby-like activities? o Research if there is someone else who gets paid to engage in similar activities o Are there at least three identifiable individuals whom are willing to commit the time and effort in supporting a self-employment venture? o Are two of those people, individuals BESIDES the parents? If not, they need to be. (Peer involvement

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What we have found, in many cases, persons with disabilities say no, or I don’t know, not because they cannot understand entrepreneurship, but more so because they have not had the opportunity to familiarize themselves with the concept. If it is not spoken about at home, or if the person has not been exposed to entrepreneurship by way of a parent, family member or friend, then how can they themselves understand it to be an option, much less a viable one. As a matter of fact, in most cases, without bringing disabilities into the context, people whom are not exposed to entrepreneurship during their younger years in life, do not pursue it. In contrast, individuals growing up with family members, friends or peers that are and share experiences of being an entrepreneur, see entrepreneurship as a viable option in life. There is little difference with our loved ones with disabilities. Expose them to entrepreneurship often, consistently, and show them that you yourself believe that it is a viable option for their future of independence, and you will see a shift. So, in conclusion, how do we define viable? We don’t. The person with disabilities does. w Minerva Vazquez Santiago, co-founder, is a succussful attorney focused on special needs law. She has experienced entrepreneurship for the past 15 years. Boaz Nelson Santiago, co-founder, has a background in psychology specializing in youth leadership and entrepreneurship education the past 15 years. www.picassoeinstein.com

Join us in Orlando this June!!!

Florida’s Premier Event for People with Disabilities and Their Families

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170+ Educational Breakout Sessions!

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The Family Factor of Five:

Making Time for Fitness

(and Actually Doing It)

by Eric Chessen, M.S., YCS

he first half of my career was spent trying to convince people in the autism world that fitness is important for this population. With increased attention towards healthy living, there seems to have been a positive shift. Most of the families with whom I work are in a perpetual state of “wanting to get active” and “knowing that they should start” a home program. I have this issue with the idea of awareness. Sure, you know that fitness is something that you and your family should be engaging in, but all those factors that creep in through the days have rendered that awareness fairly useless unless it is enacted upon. So let’s start with Five Factors for starting home-based fitness programs.

1) Start Underwhelmingly. I want you to begin with one rep of one activity/ exercise but do it consistently every day as a family. It could be a ball toss, a short hop, a jumping jack, any non-sedentary, quasi-exercise movement will do. This is less about physical fitness than developing some structure and making time for something new. Involve the whole family for “jump time.” You’re all going to jump up. Once. Even if it is a mere

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approximation of a jump, as many individuals with ASD and related special needs may not yet have that skill. No matter, a jump-esque movement will do.

2) Keep fun stuff around. I’ve written often about my go-to equipment. Dynamax medicine balls, Hyperwear Sandbells, spot markers, and cones. The majority of my Autism Fitness programming is done with these essentials and a few other items depending on the amount of space available. Compared to most fitness and specialty equipment, those on my list are inexpensive, don’t take up much room at all, durable, and, most importantly, can be used by individuals at any ability level. They can be used for all the fundamental movements and added to progression activities once the basics are mastered.

3) Frame it right. Language is remarkably effective for turning kids and teens on or off to an activity. Yes you want everyone to participate and no, exercising and movement may not be everyone’s favorite thing to do at first, however using the “have to” series of words is a great way to get young people to really not want to participate. There’s an inverse relationship between “have to” and enjoyment. It’s why one of

fun fitness health & fitness the rules in Autism Fitness is “you can’t force fun.” Provide a positive environment for family fitness time, even when resistance occurs. You’re going to be starting out slowly to begin with anyhow as discussed in point # 1. I tend to replace “You have to” with “Let’s try…” Let’s try is far more suggestive than authoritarian, more of a nudge that a push.

. . . y r T s ’ t e 4) Consistency Overrules Fear. I’ve become convinced that part of the “busy schedule” mentality is an apprehension about exercise. Much of what I do in my consulting work is a process of exercise de-mystification. “No, the treadmill is not the best option for losing weight,” “No, exercise machines are probably not a good basis for a home or adaptive PE program,”“There’s no magical mind-body thing happening in yoga class,”“Running laps is not going to build strength,” “Sit ups and crunches are a terrible idea here.” Yep, those are at least bi-weekly conversations. The nifty thing is that when we get into more appreciable, appropriate fitness, the options for “what to do” become more adaptive and more fun. Using the rule of Putting Movements First and focusing on squatting, crawling, pushing, pulling, and carrying leads us to choose activities that are not only more dynamic, but can be performed at any age, ability level, and in the vast majority of environments including a small living room. So knowing what to do can alleviate the clutter of mixed messages from

the fitness industry, gym ads, magazines, and the multi-billion-dollar machine that is the youth sports industry.

5) Play. I don’t pretend that most of my athletes love fitness the first (second, third…) time we do a session together, quite the opposite. Much of Autism Fitness education is about positive behavior support and pairing exercise with other reinforcing activities so that eventually it becomes something enjoyable. Think of play as the independent seeking of physical activity. If we set up a bunch of brightly colored cones, spot markers, and throw a few bouncy balls on the ground, what can we invent? How can we satisfy that list of basic movements? What two or three activities can we link together to make a game? Play offers challenge without competition, something to consider when working with special needs populations. Find a way to incorporate an activity, song, or experience that is already well-liked and build the fitness program for the day around that. The relationship between consistency and play is the more consistent the exercise activities, the sooner they will be mastered, and the sooner mastered (can be performed independently), the more they may be used in random, play situations. There’s your five. Nothing extraordinary, no life hacks; just good preparation based on experience. You may find that family fitness time becomes something to look forward to, something that relieves stress and, imagine, leads new people to enjoy exercise because it is exercise done intelligently and playfully. I’m proud that I no longer have to justify why fitness is important for the ASD and special needs population. Now the goal is accessibility.w Eric Chessen, M.S., is the Founder of Autism Fitness. An exercise physiologist with an extensive ABA background, Eric consults with families, educators, and fitness professionals around the world. Eric works with his athletes in the NY metro area and is the author of several E-books. Visit AutismFitness.com for more information. MAY/JUN 2015

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How Will We Eat?

Summer Traveling Tips by Barrie Silberberg

acations are a wonderful time for families to bond, relax and enjoy! You will find many tips here to assist you if you (or your child) are on a special diet, even if they can normally eat any type of food. These suggestions will be helpful to make your vacation a wonderful memory for many years to come.

How will we eat? Pack foods that are not perishable. Always be on the safe side, in case you cannot get to the hotel in time, or have to go to a restaurant that will not accommodate your special diet.

Foods to carry with you: Pretzels, bagel chips, crackers, breadsticks, snack bars, cereal, granola, trail mix, chips, dried or freeze dried fruits and vegetables, nuts, fruit cups or “squeeze-ables”, fresh fruit, nut spreads, jerky, etc. If you are staying with relatives or camping and have access to a place where you can boil water, this new product can be ideal. There is no refrigeration needed. These products are fully cooked: they just should be heated. They can be heated in the pouch that they come in and could even eaten cold, bet they do not taste as good as if they were to be heated. Some of their products can even be put into a microwave. http:// www.myownmeals.com Some of their meals can even accommodate a variety of special diets: http://www. myownmeals.com/special-diets/meal-ingredients/ If you are on the road and driving from place to place (or driving a long distances), you can use backpack coolers or regular coolers to keep your food fresh and cool. Use ice from the hotel, for the road, or use freezer packs. Buy small ones because many hotel freezers only have a small amount of space. Ask the hotel if they can keep your items in a larger refrigerator or freezer. Mark them VERY clearly in a sealed bag. This is especially important if you have to check out of your hotel but will not be hitting the road until much later.

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Here are some companies that sell backpack coolers and other types of travel coolers. LINK: http://www.keepyourcooler.com/backpack-coolers.html LINK: http://www.bagking.com/catalogsearch/ result/?q=backpack+cooler LINK: http://www.ebags.com/search/back-pack-coolers?lastterm=back +pack+coolers&x=20&y=19

A cooler on wheels is also a wonderful idea for traveling. They can be wheeled into your hotel room or to your camp site. Here are some rolling coolers: LINK: http://www.ebags.com/category/travel-accessories/insulatedbags/coolers/f/rolling LINK: http://www.amazon.com/s/ref=nb_sb_noss?url=searchalias%3Daps&field-keywords=rolling+coolers

Eating Away From Home ALLERGY-FREE REGISTRIES There are several online registries that list restaurants and bakeries that can provide special dietary menus or have staff with allergy-free knowledge. Keep in mind not ALL of the listed locations have provided training regarding cross contamination and special handling of food. Some of these sites are not up to date. It is wise to contact the establishment prior to your arrival to see if they are still in business and if they can properly assist your needs. Since the advent of modern technology there are many apps that can now assist you, too. See my article in Parenting Special Needs Magazine, Taking Care of Your Child’s Special Food Needs in the March/April 2015 issue. USA LINK: www.specialgourmets.com LINK: www.

glutenfreerestaurants.org LINK: www.glutenfreeregistry.com Canada LINK: www.penny.ca/Travel.htm LINK: http:// munchyymenus.com/gluten-free-restaurant-menus-canada/ LINK: http://munchyymenus.com/category/vegan/ UK LINK: http://www.stylist.co.uk/life/recipes/the-best-gluten-freerestaurants-cafes-and-bakeries-in-the-uk LINK: http://www.specialdietsdirectory.co.uk/special-diet-friendlyeateries-c42.html Many places in the world: LINK: http://allergyfreepassport.com/

Since the airlines do not allow gel packs, use frozen peas to keep your allergy-free foods safe for plane travel. Bring some of the ideas listed above to snack on or eat, if it will be mealtime. Check with the airline’s web site to be sure you know what you can and cannot carry on the plane. You might want to pack some food in your luggage, too.

AMUSEMENT PARKS Many amusement parks are great about catering to patrons with special diets. Call ahead and view the following web sites to find out what establishments within the park can best meet your needs. Disney: California call 1-714-781-DINE. LINK: https://disneyland.disney.go.com/guest-services/special-dietaryrequests/ Florida call 1-407-WDW-DINE. LINK: https://disneyworld.disney. go.com/guest-services/special-dietary-requests/ (Neither has a toll

free number.) If you give them enough advance notice, they will send you lists of food locations and restaurants in the park that accommodate your special dietaryneeds. For other Disney parks check their web site.

Legoland: San Diego (Carlsbad), contact 760-846-0876 or LINK: http://california.legoland.com/plan/dietary_guide/ Contact them at least 72 hours, prior to your arrival. Florida LINK: http://florida.legoland.com/en/EXPLORE-THE-PARK/ Dining/

Windsor, UK contact the park at least 24 hours prior to your arrival, allowing for more time, during peak times. LINK: http://www.legoland.co.uk/Terms-and-Conditions-container/ Dietary-Requirements/

For the other Legolands contact their food service department to inquire about how they can assist you. Many amusement parks are very good about allowing you to bring in your own food and beverages if you tell them, prior to them searching your bags, that you or your child are on a restricted diet. It might be wise to carry a “doctor’s note” just in case they ask you for proof. If someone gives you a difficult time, go to Guest Relations. Vacations should be a wonderful experience for family time and connecting. Do not let food restrict your time together. Have a wonderful time. Bon Voyage.w Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-byStep Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others Interventions. Her web site is: www.puttingyourkidsfirst.com

Other Ways and Places to Travel Flying

Now we get Mondays off!

One day a week, cut out meat.

Summer Travel & Outdoor Fun with Apps by Cristen Reat and Amy Barry

hether you are traveling out of town this summer or planning a staycation, encourage the kids to take an active part in the planning process. In doing so, they will feel a sense of ownership and likely enjoy doing the activities they planned. Not to mention the added benefits of developing life skills and killing summer boredom.

SkyView® Free - Explore the Universe App Review: Stargazing is a great free summer activity that kids can do while camping or in your own backyard. SkyView® Free - Explore the Universe is an astronomy app that turns mobile devices into a virtual telescope. It uses your location to overlay your view of the sky onto your camera view. Skyview locates planets, stars, constellations, and a few of the brightest satellites that orbit the earth. This highly engaging app makes starwatching interactive and educational. Additional features include night mode and an augmented reality view of the universe. End a day of summer fun with s’mores and stargazing with loved ones. Price: FREE Learn More: Features & Benefits http://bridgingapps.org/app/?id=413936865

IOS:

https://itunes.apple.com/us/app/skyview-free-exploreuniverse/id413936865?mt=8&ign-mpt=uo%3D4

Google Play:

https://play.google.com/store/apps/ details?id=com.t11.skyviewfree&hl=en

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Bound Round: Kids Travel App Review: With the Bound Round: Kids Travel app, kids can travel the world virtually through other kids around the world. How cool is that? Bound Round is an innovative travel guide by kids for kids. Children create their own travel stories and share them digitally and safely to help other kids learn about a destination. So, if long distance travel is too much of a challenge or out of the budget, your kids can explore the world via videos, games, journals and interactive maps. The app is a fabulous mobile solution that offers interactive virtual travel for all families. Price: FREE Learn More: Features & Benefits http://bridgingapps.org/app/?id=583732241

IOS:

https://itunes.apple.com/us/app/bound-round-kidstravel/id583732241?mt=8

Waze Social GPS, Maps & Traffic

Cooking Fun For Kids

App Review: Children and teens can use Waze Social GPS, Maps & Traffic, a community-based traffic and navigation app, this summer to help plan trip routes, learn about nearby landmarks and use one of the neat features that allows them to preview what they will see when they get to the destination. And, while you are driving, kids can assist navigation. They follow the route, let you know what is coming up, and report hazards or traffic conditions. As you travel, other Wazers in the area are sharing real-time traffic and road information, saving time and gas. Price: FREE Learn More: Features & Benefits

App Review: Pack a healthy picnic lunch or snacks to take on your summer outings using the Cooking Fun For Kids app. The app is filled with fun and healthy kid-friendly recipes, videos, games, books, photos and puzzles designed to empower, entertain and educate kids to cook and eat healthfully. Combine amusing games with a dollop of engaging recipes. Mix together with a splash of silly and a whole lot of creativity and you have a playful nutrition app for kids. Be sure to check out the recipe for campfire crunch. Yummy! Price: FREE Learn More: Features & Benefits

http://bridgingapps.org/app/?id=323229106

http://bridgingapps.org/app/?id=799530322

IOS:

IOS: https://itunes.apple.com/us/app/cooking-fun-for-kidshealthy/id799530322?mt=8&ign-mpt=uo%3D4

https://itunes.apple.com/us/app/waze-social-gpsmaps-traffic/id323229106?mt=8&ign-mpt=uo%3D4

Google Play:

https://play.google.com/store/apps/ details?id=com.waze&hl=en

Geocaching App Review: Enjoy a modern day treasure hunt in your area or while traveling this summer with the Geocaching app. The app is everything you need for all your geocaching adventures. Geocaching is the recreational activity of hunting for and finding hidden objects by means of GPS coordinates. A geocache consists of a small, waterproof container that holds a logbook and inexpensive trinkets. When you locate the container, you sign the logbook and if you decide to take a trinket, you leave one in its place. Geocaching is fun and encourages young people to get out of the house and explore the world while using technology. Price: $9.99 Learn More: Features & Benefits http://bridgingapps.org/app/?id=292242503

IOS:

https://itunes.apple.com/us/app/geocaching/ id292242503?mt=8&uo=4

Google Play:

https://play.google.com/store/apps/ details?id=com.groundspeak.geocaching&feature=search_ result

Swackett Jr. App Review: Rain or shine, let your children help plan for outdoor activities by checking the weather on their mobile device and dress for a day of summer fun. Swackett Jr. is a kid-friendly visual report of the weather forecast, temperature ranges for the next 5 days, and a graphic of a child dressed for the current weather. Users can add their current location as well as additional locations. Kids will be building decision-making skills and independence as they identify the weather and dress for the day. Price: FREE Learn More: Features & Benefits http://bridgingapps.org/app/?id=721180171

IOS:

https://itunes.apple.com/us/app/swackett-jr./ id721180171?mt=8&ign-mpt=uo%3D4

Cristen Reat is co-founder of BridgingApps and a mother who found success when using a mobile device with her children who have special needs. Amy Barry is a Content Manager and Editor with BridgingApps and mother of five young children with a passion for mobile technology in education. MAY/JUN 2015

Parenting SPecial needS.org

fun & functional power of play

PAPERCLIP JEWELRY by Barbara Sher

ou’ve probably made a paper clip necklace at some point in your life. But, did you think to give your child this handy activity? All you need is a simple box of paper clips. If you want to go “all out”, get the colored ones. Your child’s eyes will widen if given a whole box of clips, but you will likely found them scattered around the house for forever after. Better is giving a whole bunch in a bowl and presenting your demo on “How to Make a Paper Clip” necklace. Besides the challenging fun, you can take parent pride in knowing that you’ll be increasing the fine motor skill and attention span of your young. But just as good is that while they are spending quality time focusing, you get long quality minutes to yourself. Every parent’s need! A win-win. When the necklace is done, you can encourage a bracelet or necklaces for Dad and the neighbors. You could also show her or him how to use paper clips the traditional way: putting two pieces of paper together. Supply papers that need to be coupled together by cutting up used paper or tearing apart a cheap note pad. Or you could use a piece of cardboard from the sides of a cereal/cracker box and have your child slips paperclips all around the outside. Paper clipping is, after all, a learned life skill. However, s/he might have to be a little older before introduced to the fun and frustration of another life skill--stapling!w GOT GAME? Barbara Sher’s ten books in eleven foreign languages has a gazillion ideas on ways to play with your child whether you’re a parent of one or an inclusive teacher with many. To see which of Barbara’s books and CD fit your needs, check website : www.gameslady.com

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Paper Clip, Duct Tape Necklace or braclet; a “How To” pinned on our Fun & Functional Pinterest board.

learning to sign fun & functional

ASK Angie ASL - Classroom Tips by Angie Craft HandCraftEdASL

HandCraftEdASL

WATCH VIDEO DEMONSTRATION: Summertime is one of my favorite times. I enjoy the more relaxed environment of life and family togetherness. One of my “soapbox” issues is the lack of family involvement with group activities including a family’s deaf child. Some of my fondest memories are those of my family sitting around the dining room table playing card games during hurricane season. The power was out, so there was no TV. It was pouring rain, so you couldn’t go outside. And, it was before “smart” phones, so you had no video games. Very often people find it is easier to allow their children to isolate themselves with technology. I think this is really impacting their social skills and their ability to interact with others. So, this is a short video showing you how to play UNO with a deaf child. Even if your child is not deaf, this is a fun way to play an inexpensive family game. If you like this, you can find versions of “Old Maid” and “Go Fish” with sign language cards on my website and for sale on TpT under HandCraftEdASL. w

Angie Craft author and teacherbrings over 26 years of experience in deaf education and is committed to serving the deaf community. Keenly aware of the isolation that deaf students often experience, Angie developed and wrote HandCraftEdASL to bridge the communication gap between deaf children who primarily use American Sign Language and their parents, peers or educators . www.handcraftedasl.com

Know the Signs of Hearing Loss Signs of hearing loss in children, youth and adults. Recognize these signs? Children • Lack of attention to sounds (birth-1 year) • Does not respond when you call his/her name (7 months-1 year) • Does not follow simple directions (1-2 years) For more information: follow us on FaceBook @ HandCraftEdASL MAY/JUN 2015

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Strawberry & Lime Infused Water Encouraging Speech & Creating Yum!

Ingredients Strawberry & Lime 2 quarts of water 10 Strawberries, thinly sliced 1- 1-1/2 Limes, thinly sliced Pre-wash all fruit. Ice Any combinations of fruits will work.

Try Citrus Blend

1 orange, thinly sliced

by PSN TEAM Language Tips by Becca Eisenberg

ruit Infused Water Combinations: With summer around the corner, how about ditching the juice boxes and soda and create a healthy fruit infused water instead? The beauty of making your own infused waters is that you can create any combination that your kids, or you, desire and add as little or as much fruit into your drink! Let the kids choose the fruit combinations for upcoming infused water while doing your weekly grocery shopping.

1 lime, thinly sliced 1/2 a lemon, thinly sliced

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Directions

foodie fun fun & functional

Parent/Kiddo: Cut the tops of the

Language Time Tips:

Kiddo: Thinly slice strawberries.

1. Work on categories by discussing what ingredients you are adding to the water. Discuss whether it’s a fruit or vegetable and where it grows.

Parent/Kiddo: Thinkly slice limes

2. Encourage commenting by exploring the citrus fruits such as a lime and lemon. How are they different? How are they the same?

Strawberries off.

Tip: Use an egg slicer for safety!

Parent Tip: start all the cut marks for your child, then let your child cut each slice using a serated, plastic fork. Citrus rinds can create a bitter flavor, if you find this recipe bitter, cut off citrus rinds before infusing.

Kiddo: Add the limes first and use a wooden spoon to squash the limes at the bottom of the jar. Next add Stawberries

Kiddo: Add water Kiddo: Stir with wooden spoon.

3. Work on sequencing by retelling the steps of the recipe. 4. Explore different ways of making the recipe by adding different fruits, vegetables and herbs of your choice. 5. Work on actions such as cut, mix, pour, wash. 6. When drinking your infused water, compare it with regular water. Encourage your child to discuss the differences and why. 7. Discuss what happens to the color of the water as time progresses. Take a photo and compare how it looks Day 1 and then again Day 4. What happens to the water and why?

Parent/Kiddo:

Let water infuse for at least two-four hours or in the refrigerator overnight before enjoying.

8. Work on prediction by asking your child what it would taste like if you added a certain ingredient. For example, if you added a lot of orange zest, what would the water taste like?

Eat! Talk! Enjoy!

9. Encourage expanding vocabulary by discussing new words related to fruits and vegetables.

How long does fruit-infused water last? You can drink & enjoy your refrigerated infused water for about 3 days after infusing. You can reuse the same fruit and add another batch of fresh water once you have gone through your first batch. The fruit can be used (typically) up to three times, but it will also depend on the freshness of the fruits you are using. When in doubt; toss it out. Then, start with a fresh

10. Encourage your child to make their own infused water by requesting different ingredients.

batch of fruit.

11. Ask “wh” questions such as “Why do we wash off the fruit before using it?”, “Where do strawberries grow?”. Carryover Picture Books for this Recipe Do You Want Your Child to Eat a Rainbow Diet?>>

Becca Eisenberg is a mother of two young children and a speech language pathologist, author and instructor. Her website, www.gravitybread.com encourages learning time during mealtime. On her website, she writes children’s book recommendations, app recommendations, as well as child friendly recipes with language tips their family.

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proud moments® enjoy your life

Sharing“I CAN!” attitudes Can & Will Succeed! I thought I would share our joy in beating the odds. My son has a severe learning disability, ADHD combined type, and has seizure activity that fires 6-12 seconds in length throughout the day. Needless to say, school has been a real heartache. “Mom, there’s only 49 days of school left. That means I’m going to have lots of homework that comes home now....and I’m actually excited” he says with a smile. Jordan carries several diagnoses and for nearly all of his schooling, he hasn’t been able to comprehend phonics; reading; math; writing or even speech near “age level”. Ironically, I just had his IEP meeting with school. He is climbing charts and excited about learning. He now has confidence to succeed and is show-

Jordan exhibiting an “I CAN” attitude Photo courteousy Facebook Friends

ing major growth. This truly is “A day The Lord has made”! I’d like to show those neurologists he CAN and WILL exceed their predicted 6th grade highest, potential, academic level. I am so proud of this little fighter today! w ~ Alicia Carlson (Proud Mom)

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Share a Proud Moment with us Next Issue!

Proud Moments can be any time that you have been extremely proud of your child with special needs. It can be when they are giving it their all or reaching a milestone. submit@parentingspecialneeds.org

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