FA M I LY F U N • I N F O R M AT I O N • I N S P I R AT I O N
New Wonders for Walking
Special Mobility & Recreation Resources
Super
Dadvocates
share their perspectives
Keeping our children SAFE
A to ZOO
Accessibility
from KidZooU
The Special Mother by Erma Bombeck Did you ever wonder how mothers of disabled children were chosen? Somehow I visualize God, hovering over the Earth, selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. “This one gets a daughter. The Patron saint will be Cecelia.” “This one gets twins. The Patron saint will be Matthew.” “This one gets a son. The Patron saint.... give her Gerard. He’s used to profanity” Finally, He passes a name to an angel and smiles, “Give her a disabled child.” The angel is curious, “Why this one God? She’s so happy.” “Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel.” “But has she patience?” askes the angel. “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.” “But Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect - she has just enough selfishness.” The angel gasps - “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes here is a woman whom I will Bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see... ignorance, cruelty, and prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.” “And what about her Patron saint?” asks the angel, his pen poised in mid air. God smiles, “A mirror will suffice.” Happy Mother’s Day
inside this issue... May jun 2013
Features
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47 38 12
17
Keeping Our Children
28
An Ode to the Exceptional Mom
38
Dreams Made True
47
A to ZOO Accessibility
10 11
22
Cover photo courteousy of Cynthia LeDoux-Campobasso
Special Mobility & Recreation Resources
Super
Dadvocates
share their perspectives
Keeping our children SAFE
A to ZOO
Accessibility
from KidZooU
Safe in the Real World
May is a celebration, not only for the kick off to spring, but also of mothers. New Wonders for Walking from KidZooU
psn community news
FA M I LY F U N • I N F O R M AT I O N • I N S P I R AT I O N
Mom & Me COVER Contest Winners! Cynthia & Baybeblue LeDoux-Campobasso
Big Daddy and Ken Stewart Share Their Perspective with You
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12 New Wonders for Walking
Super Dadvocates
Do You Know the difference
between “transition service needs” and “needed transition services”?
Noteworthy! First Clinics first of many New Patient Whiz App The Scoot Center Behavior Basics Boot Camp for Teachers
check it out!
Products You Can Use & Win!
real life Relationship Rescue Summer’s here: Make lasting memories
26
Ask the Nurse
63
Proud Moments
Summer traveling tips
Ask the NURSE
Sharing “I Can” Attitudes
MAY/JUN 2013
Parenting SPecial needS.org
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inside this issue... your life
58
26
30 31 32
Sharing real finds
34
Letting Go!
36 41
52
63
Summer help for busy moms
Organization Tips Summer Camp Organization
Mommy Time Outs Sailing in Bora Bora Allowing Your Child to be Independent
special focus Tiny Light: Isabel Raising a child with Microcephaly & Polymicrogyria
Mobility & Recreation Special Resources
health & fitness
52 53 54
Super Health Spilling the beans about your child & caffeine
Good Nutrition Summer Traveling
Summer Success Steps for Getting Active
fun & functiona in every issue 6 7 8 9 56
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psn contributors from the heart contest/giveaways facebook shares psn apps & more
MAY/JUN 2013
58 60
Power of Play
62
ASL Tips Learn to sign the
Got Pool Games?
“Foodie� fun for kids: Summer Rib Rub Pledge of Alligeiance
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Parenting Special Needs Magazine is a FREE, online publication. Empowering parents, caregivers, and everyone by providing resources, information and inspiration.
Subscribe FREE Today at www.PaRENtiNg SPEcial NEEdS.oRg
psn contributors making a difference Founder/editorial director
Chantai Snellgrove
chantai@parentingspecialneeds.org Publisher/editor-in chieF
Tom Snellgrove
tom@parentingspecialneeds.org design director
Chantai
info@parentingspecialneeds.org Meme Hieneman Ph.D. in Special Education
Susan Parziale
Eric Chessen
Barrie Silberberg
Organizing Consultant
M.S., YCS, Exercise Physiologist
Author
graPhic designer
Michael Leisttein
info@parentingspecialneeds.org adVertising sales
Chantai/Judy Jaszcz Corporate Sponsors & Ad Sales Manager sales@parentingspecialneeds.org
Curt Mellott
MidWest & Lower Eastern curt@paraentingspecialneeds.org Robin Newman
Douglas Haddad
Christina Bartlett
LCSW, PC Clinical Social worker, Adjunct Professor
Ph.D. (“Dr. Doug”) Author, Full-time Contributing Writer
Registered Dietitian
Chynna Tanara Laird Author, Psychology student, Freelance writer
Nadine Timpanaro
Schools, Camps & Residences Nadine@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
Kami Evans Certified Special Needs Children’s Yoga Instructor
Sarah Cook
Sarah Choueiry
Photographer Cookwire photography
Speech & Language Pathologist
Ernst VanBergeijk Ph.D., M.S.W. NYIT/VIP
Barbara Sher
Pediatric Occupational Therapist & Author
“The best way to find yourself is to lose yourself in the service of others”. ~ Mahatma Gandhi
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 © 2013 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
www.parentingspecialneeds.org
editorial director from the heart
Happy Mother’s Day, Father’s Day and Summer... If you have children....and we all do since you’re reading this...this time of year always means a similar thing: school’s out and summer is coming! Sometimes this strikes fear into our hearts because we have to wonder what to do with our little ones. Sometimes it fills us with a sense of adventure as we look forward to getting away for a summer vacation. And sometimes we just look forward to a different type of schedule. One that doesn’t include the Monday through Friday routine of school. In this issue we have a great article on A-Zoo accessibility about the wonderful zoo in Philidelphia, Pa. Who doesn’t love looking at and learning about all the wonderful animals at a zoo? If your child might be spending some time in the water, be sure to check out “Got Pool Games”. This issue, we are honoring 2 super Dadvocates: F. Lewis “Big Daddy” Stark and Ken Stewart. I thought it would be a nice change of pace to get some perspective from a couple of great Dads since Father’s Day falls during this issue. As always, I hope you enjoy the issue. Our team has worked hard to make sure we bring you information and content that you can benefit from in some way. I trust you will have an enjoyable, safe, fun, and memorable summer.
Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org
Coming Next Issue Independence: Life Skills, Therapies & Social Activities
MAR/APR 2013
Parenting SPecial needS.org
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about our cover...
Great Giveaways Log on to parenting special needs.org click on CONTESTS and enter to WIN these great products.
Cynthia LeDouxCampobasso, winner
t n a W W in I t ? it! Look for this symbol on pages then enter to WIN at PSN Contests
of this year’s Mom & Me contest, shown with
Baybeblue, 6, who is soaking up the fun in the pool. Among the conditions that Baybeblue has are: Epilepsy, Cerebral Palsy, and global developmental delay When not in the pool, she enjoys time at home with her 3 siblings, Layla (15); Taylor (13); and Kaysen (8mos). She also loves riding in the car with Mom and listening to the loud music. Cover photo courtesy of Cynthia LeDoux-Campobasso
See-Through Lacing Cards by Fun and Function
FunBites by Fun and Function
Waboba Ball from Ableplay
Stay in touch in order to W in! Like us on
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Subscribe
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LIKE US ON FACEBOOK Visit facebook.com/parenting.special.needs.magazine to get advice, talk with other parents and become eligible for giveaways.
Q &A
ASK SPECIAL PARENTS
Does anyone know where to purchase swim trunks for kids that are too big for swim diapers? My son is 5; about 75 lbs and wears a size 8 boys. Because he is not completely toilet trained, he has to wear something that protects. Thank you!
SPECIAL FANS
Many great ideas were shared like: www.watersafety.com/facility-equipment/reusable-adult-swim-diaper.html This one with velcro in the front, is perfect if they have an accident and you want quick access! www.adultclothdiaper.com/PRODUCTS_2/ Youth-Swim-Diapers_2/Swim-Youth-Velcro The below link shows you how to make them! http://adaptingcreatively.blogspot. com/2011/04/diy-disposable-swim-pants-forlarger.html Online store: www.especialneeds.com has a selection along with details and customer
reviews.
Wonderful “WACKY” Words or Phrases
Miss Amber Spreading Some Sunshine... Submitted by
Heather Kendrick Post pics to our wall... and you just may be selected as our SPECIAL FAN! on our Fan page, just go to where it says “share” then go to photo upload.
“murdercycles” = motorcycles Submitted by Ida Kessler
Join Us on Facebook! MAY/JUN 2013
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Teaching is a work of Heart ©
Nominate Your Exceptional Teaching Professional Is there someone you know, in the teaching profession, that deserves recognition for all of the good deeds they have done? Now is your chance to take the time and bring them into the spotlight! In NEXT MONTH’S ISSUE (July/August) we will feature ANY school staff member: teachers, administration, aids, helpers, cafeteria workers, etc...who you feel is exceptional and shines no matter what. Tell us why the person you picked deserves to receive this nomination.
Didyou KNOW
D
o you know the difference
between “transition service
needs” and “needed transition services”? Do you know the legal requirements in the Individuals with Disabilities Education Act (IDEA) for Transition to adult services?
It is very easy to do: Please share your story about the person (word count up to 100) and how they have made a difference or have impacted your/your child’s life. Please include a picture of your nomination.
Find the answer at http://www.ncset.org/topics/ieptransition/ faqs.asp?topic=28g
Send your submission and photo to: submit@parentingspecialneeds.org Please put the word “Heart” in the subject line and include YOUR contact information.
Source: Respect Ability Law Center Photo: www.moving-forward.org
Sharing
updates
New Patient App Promises To Ease ObamaCare Transition
news psn community First Clinics
leaders in adaptive recreation
First of many Not one, not two, but three First Clinics were recently held at Eastern Michigan University in Ypsilanti for those with physical challenges. OPAF’s First Swim, First Paddle and First Dive Clinics were all held concurrently to offer a choice in adaptive water sports. This clinic, sponsored by the University of Michigan O & P Center and coordinated by the O & P students of Eastern Michigan, has been growing for the last four years and now included adaptive swim instruction. Over 17 participants were part of the day, some trying all three activities. “EMU First Clinics provided a safe environment to learn or relearn an activity. Specially trained instructors taught us how to regain independence and confidence while having fun!” said Shauna Mote, Limb Loss Coordinator for the University of Michigan. For more information on OPAF and The First Clinics, visit www.opafonline.org.
The Patient Whiz app (iPhone/ iPad) has a tremendous potential to empower those with little, or no, medical background to expedite their own diagnoses. Patient Whiz offers an unbelievable detail and expertise regarding questions that physicians typically ask. Checklists and questions within the app help you prepare for an appointment or emergency visit by allowing you to log symptoms, conditions, and other factors prior to your arrival. Some features of this app include: ability to create a profile for each family member, audible alarms to remind users to refill medications, keep doctors’ appointments and much more. Patient Whiz strives to teach users how to have complete control over their health and medical care. Visit: http://patientwhiz.com
The Scott Center Behavior Basics Boot Camp for Teachers Set For Aug. 2 The Scott Center for Autism Treatment, at Florida Institute of Technology, offers Behavior Basics Boot Camp for teachers Aug. 2, from 9 a.m. to 4 p.m., in the Scott Center’s Seminar Room. The boot camp offers teachers guidance on managing challenging behaviors in their classroom. Brevard County teachers who participate in the boot camp will receive in-service points. Teachers who want to earn in-service points must contact and register with Barbara McFadden at: (321) 633-1000, extension 534; or email: mcfadden.barbara@brevardschools.org. Those who are not Brevard County employees can register at http://aba.fit.edu. The cost is $50. For more information, call (321) 674-8106, or, visit www.thescottcenter.org. The Seminar Room is located on the second floor of The Scott Center on the south side of the Florida Tech campus, 150 W. University Blvd. , Melbourne, FL. MAY/JUN 2013
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check it out! special products
Products you can use and win!
Some of these Special Products are available for Parenting Special Needs Contest Winners. To enter, click on CONTESTS on our site and register.
P Clearly Sports
laying outside provides children with a sense of freedom and the stimulation only a natural environment can provide. But there’s one play product that totally thrives outdoors—balls. Playing with balls offers boundless opportunities for kids to learn the laws of nature and motion like gravity, trajectory, force and velocity. children experience so much from engaging in ball games by rolling, bouncing, aiming, throwing, catching, hitting, blocking and balancing these little spheres of fun. Here’s a few or our favorites that can change any backyard, driveway or patio into a ballpark, bowling alley or golf course.
Clearly Sports Bowling, part of the little tikes clearly Sports collection builds eye-hand coordination, visual tracking skills and strengthens grasp and release abilities. Small balls inside clear pins make great reinforcing sounds when knocked over signaling, it’s a strike! Do you have a product you would like to share with our readers? Please send us an email describing your product. We are happy to review and test your product.
What’s “APP”ening? Helpful Apps WH Question Cards-Pro: Who, What, When, Where, Why by Super Duper Publications This educational
submit@ parentingspecialneeds.org Please make sure to put Product Review in email subject line.
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app teaches children how to correctly ask and answer WHO-WHATWHEN-WHERE-WHY questions. It has four entertaining, learning games for each WH set of cards and includes enhanced data tracking so parents and educators can keep track of child’s progress. Kids will love the decoder option that they can drag over the multiple choice answers. Price: $2.99 MAY/JUN 2013
W in it!
Waboba Ball
Clearly Sports Baseball has an extra wide barrel that increases the hitting area and success rate for a young rookie. The twisting and rotating needed to hit the ball helps lengthen and strengthen torso muscles. Colored ball (smartly stored in the clear plastic bat) are brightly colored and easy to spot. Clearly Sports Golf helps kids refine key fine and gross motor skills. Again the golf balls store nicely in the golf club. Plus fetching the balls after hitting is a great way to encourage more exercise. Waboba Balls by Waboba, Inc. takes to the water where these babies can bounce and float. Made to play in knee high to waist high water, kids get the added resistance the water provides when moving around to retrieve and toss. The weightlessness of the water can also provide more independence for children with physical disabilities. Let your kids have a ball this summer while learning new skills, getting fit and enjoying the great outdoors. Reviewed by Ellen Metrick, Director of Industry Relations & Partnerships, National Lekotek Center, emetrick@lekotek.org For information on Little Tikes products go to www.littletikes.com For information on Waboba Ball and other products appropriate for kids with special needs go to www.ableplay.org. AblePlay is a website sponsored by the National Lekotek Center, an authority on products appropriate for children with special needs at www.lekotek.org. Follow us on Facebook.
for Children with Special Needs Kid in Story by Locomotive Labs Kid in Story makes it easy and fun to create visual stories to support learning, social modeling, and early literacy with your child as the star character. Kid in Story was specifically designed to benefit children who use visual narratives to complement auditory directions, model task analysis and expected social behavior, reinforce routines and to engage struggling readers. Price $6.99
check it out! special products Self-Calming Cards
FunBites
W in it!
Instantly cut food into bite-sized fun shapes that entice even the pickiest eaters to try cheese, pizza, tofu, fish, sandwiches, burgers and more! Funbites® Cube It! and Luv It! include cutter with curved blades that quickly cut food, and a matching popper that instantly pops out the shapes so hands stay clean and food is not handled. Made in USA and BPA free. Age 3+ Price: $12.99
Pick a card, any card, and discover how to soothe your child and yourself in challenging situations, and recover from emotional upset. The 24 illustrated cards model self-calming strategies with six groups of tools: physical, auditory, visual, creative, selfnurturing and humorous. In addition, 12 activity cards provide games, in English and Spanish, to practice how to get along better, make transitions, and more. Age 3 - Adult $12.99 Price: $29.99 www.funandfunction.com
www.funandfunction.com
W in it!
See-Through Lacing Cards
Enter to WIN at PSN Contests
Now you can see each hole, front and back, with acrylic SeeThrough Lacing Cards shaped like a basketball and a snail. The visual cues ease frustration and are perfect for kids with visual, perceptual and proprioceptive challenges. Lacing encourages fine motor coordination, motor planning, and eye-hand coordination. Improves dexterity and provides a warm-up activity in preparation for writing. Durable set with well-drilled holes features a green snail with the alphabet (8.5” x 6.5”) and an orange basketball with numbers 1-20 (9” diameter). Includes a pair of cotton laces. Ages 3+ Price: $21.99
Heavy Sleeper Zip into the calming weight of our sleeping bag, and wake up refreshed and rested. Designed for kids with sensory integration needs, ADHD, and on the autism spectrum. Features evenly distributed weights with mesh fabric that breathes for maximum comfort, providing the security and sensation of a hug. Cozy fleece lines the interior bottom. Unzip all the way and the sleeping bag turns into a traditional weighted blanket. Perfect for home, rest time or sleepovers. Choice of 45” x 60” inches (8 lbs) with deep sea graphics (WR4257) or 45” x 72” (13lbs) in solid sea blue with red lining (WR4333). Machine wash in cold water. Adult supervision required at all times. Not for use with small children. Never place in crib with an infant. Age 3+ to Teen. Price: Starting at $109.99 www.funandfunction.com
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June 7-9, 2013 The Hilton Orlando
6001 Destination Pkwy c Orlando, FL ccc
“Florida’s Premier Event for People with Disabilities and Their Families!” ccc
No Registration Fee for Families! 160 plus Breakout Sessions! c 100 plus Exhibitors! Employment Expo! c Adaptive Recreation Activities! Information, Training, Networking and Fun! ccc
Register at www.FamilyCafe.net or call us at 888-309-CAFÉ (2233)
Eric Chessen’s
Eric Chessen just so happens to be one of the best thinker-doers I have ever encountered in the fitness industry. His combination of practical skill and expert knowledge is an incredible value to those who serve children with different needs, and of course to the children he works with directly on the Autism Spectrum. It has been my privilege to work with him and to know him. Dr. Kwame Brown, Neuro-Scientist/Child Development Expert
Autism Fitness
Develop Fun and Effective Fitness Programs for Anyone on the Autism Spectrum
AutismFitness.com
parentingspecialneeds.org
Š 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
s up e r d advoc at e s
Super Dads Share Their Perspective with You Father’s Day falls during this issue so we thought we would bring you some perspective from 2 dads: Big Daddy and Ken Stewart; our Super Dadvocates! Learn how one dad uses hilarious anecdotes from his experience raising his autistic son to overcome adversity while the other used a life skills project to set a new course for their lives. We think you’ll get a kick out of both stories.
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s up e r d advoc at e
I
Big Daddy F. Lewis Stark
ts safe to say that no family is ever going to be perfect, but, as we learned from Big Daddy, you can use acceptance, gratitude and humor to help overcome a great deal of adversity. Big Daddy shares from the lighter side of raising a child with autism. In an interview with him, we asked several questions about him and his family and in between laughs we understood why Big Daddy’s been called, “The Dave Barry of Autism Parenting…”. It is for that reason that he was selected as a “Super Dadvocate”. When explaining his family Big Daddy gave us great insight stating, “What can I say about my family? Um, how much time do you have? I’ll go in descending order, by size…I’m big and a bit insane. Since retiring from my life as a complete lunatic a few years ago, I now spend my days enjoying my kids, puttering around the house, sleeping past noon, yelling at the TV, and thinking about what to eat for lunch. I frequently snack and never miss an opportunity for a long nap. I’ve written tens of thousands of words about Griffin. But, in a nutshell, he is fifteen, adorable, autistic, and the most unique individual I have ever had the pleasure of
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spending time with. And I’ve spent time with a ton of unique individuals! My lovely wife is the glue that holds the clan together. Stunning with a great sense of humor. Finally there is my 12-year-old daughter. Perfection. No further description required”. Big Daddy’s story is far from ordinary. When asked what he wanted the readers to know about him he said, “The whole family definitely shares my perspective when it comes to Griffin. In our family we use humor as a coping mechanism, and also as a way to bring Griffin into our world. He understands and uses sarcasm, which, we have been told, is unusual for kids with his diagnosis. We try not to coddle or baby him. Quite simply, he is a member of the family and he gets the same razzing we give each other. He rarely teases back as good as he gets. However, when he does zing someone, it is beyond awesome. Making fun of him, in our opinion, not only doesn’t not hurt him, we think it, in fact, makes him stronger”. This was the start of the idea to “blog”. Anyone who has been affected can back me when I say there are some pretty funny and clever lines that our children deliver on a not so often basis. Big daddy noticed this in his son and when asked about his son’s diagnoses Big daddy informed us, “When Griffin was
first diagnosed in 1998/1999, we felt as though our lives collapsed. While there were many resources focused on coping with tragedy and practical advice for dealing with a disabled child, we found few references describing how having a child with a disability was not all about sorrow, lost hopes, making do, and heartache but rather could be a lot of fun, too. To fill this void, we began a crusade, of sorts, to make the public aware that life doesn’t end with a diagnosis of a disability. Then, about 5 years ago, a health induced lifestyle change resulted in me spending a lot more time with Griffin. I realized that he is hilarious (sometimes intentionally) and the world needed to hear about him.” “We stopped trying to fix him and started to enjoy him and share him.” Big Daddy continued, “one thing I’ve learned and would like to share about that has made a big difference is to revel in the uniqueness and lunacy. I am blessed to get to spend so much time with such a unique individual. Also, do not tolerate the intolerant. When people stare at, or mutter about, Griffin, I stare right back and get right up in their personal space (it helps that I’m 300 pounds, heavily inked, and have a shaved head!) People don’t stare or mutter twice. Screw intolerant people.” In closing, if you have not already read his blog/ book I highly recommend it. It offers more than just a laugh. For me, it reminds me why I am blessed to be the guardian of a special needs child in the first place, and hopefully it does the same for you. w
Just for about Big Daddy
fun
What do you do for fun or relaxation? Eat. What super power would you have? Super Metabolism. Favorite technology? Tie: Microwave and Cheez Doodles. Do you have favorite Sport? Ha. Ha. Ha. Use two words to describe your child? Extra Terrestrial
F. Lewis Stark, a.k.a. “Big Daddy Autism,” is the father of a beautiful, fifteen year old autistic boy. Upon hearing Griffin’s diagnosis over a decade ago, he felt as though his world collapsed. Big Daddy often wished there was a resource available to show fathers that raising a child with a disability was not all about sorrow, lost hopes, and heartache. That led him to his first book, Big Daddy’s Tales from the Lighter Side of Raising a Kid with Autism. Big Daddy uses hilarious anecdotes from his experience in raising his quirky son as jumping off points to demonstrate that, while his life did not turn out as he expected, raising an autistic kid is far from misery. Big Daddy shows how acceptance, gratitude and humor help to overcome a great deal of adversity. Big Daddy’s Tales from the Lighter Side of Raising a Kid with Autism is about acceptance more than anything else. Sure there are a ton of poop, fart, and booger stories in there, but, mainly Big Daddy shares how his family uses creativity, humor, and acceptance to overcome adversity.
Younger image of “Big Daddy’s” son , Griffin.
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s up e r d advoc at e
Ken Stewart
T
he love of a father is an indescribable bond; someone who loves you unconditionally and is an Advocate always. This is more than true for the story of Ken Stewart and his daughter Kaitlyn, which is why he is also in this issue, Super Dadvocate. Ken Stewart’s story is an incredible journey between his twenty-four year old daughter Kaitlyn and himself… literally. Ken Stewart lives a relatively normal life; he has a wife, Pam, and 2 daughters - Kaitlyn 24 (special needs adult) and Kasey 22. However, Kaitlyn was diagnosed with hydrocephalus disorder at 6 months and a shunt was implanted. Though she is 24, she functions around an age similar to a 10 year old. But this doesn’t stop this Father/Daughter team. If anything it is the reason we are spotlighting him today. “To help Kaitlyn stay active and help her with life skills, I decided to take her downtown to video some of the old houses that we enjoy looking at. We made a map that people could scan and watch videos of our adventures. We made so many videos, we out grew the map and the idea for the Historic Savannah app was born. What started out as a life skills project turned into S.G. Adventures”.
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Ken Stewart replies with a beautiful statement about something he has learned from his experience working with his daughter, “little efforts every day can turn into big breakthroughs at any moment.” A truly remarkable response if you ask me. Parents, in general, not only those of special needs children, know that sometimes greatness strikes from the smallest of situations. In the interview with Ken we asked how Kaitlyn’s life had been impacted since this opportunity and his reply was, “Before the project, she had no friends, played with Legos, was very shy and had a low self esteem. Since the project, she has blossomed. She wants to be, as she puts it, “more professional” looking. Additionally, her self-esteem has improved greatly; she has made friends for the first time in her life. There is another benefit to all the work she does with me - instead of playing Legos all the time, now she is editing pictures on the computer - using higher levels of thinking”. S.G. Adventures is a business that started out as a life skills project for Kaitlyn and turned into a company. We make video-based, self guided tour apps that are the first of their kind. From the PSN family to yours we hope you never stop being a dedicated advocate for your two daughters. What an amazing experience for both you and Kaitlyn. w
n u f Just for
about
Ken What do you do for fun or relaxation? When I’m not doing something with the family, I’m often out at Skidaway Island State Park, camping, hiking or in meditation. What super power would you have? Peace. Favorite technology? Apps Do you have favorite Sport? Don’t follow sports. Use two words to describe your child? Innocent Grace
GREAT RESOURCE
Serving the Special Needs Community /OCT 2011 HOOL SEPT BACK TO SC
INDEPE
LE AR NI styNGles
NDENC
Indepen
Both Apps Available in ITunes or Google Play
magaz
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PRICELESS
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Aims ination CoolTools Discrim
Information Delivered ArT DiGITALLY to you for FASTFO
for School
iPad Apps
WhatS URMeall Advo ead Ry Fis U N ! M A Y cating Sup port • Share • Spr /JUNE 2 ABse A ThMerE ap y Awarenes issu 011 Different-Abilit 1 y? 1 0 2 R AR/AP From Figet boxes to
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magazin e
magazine
Haunted Savannah The Haunted Savannah app will be another video based, self guided tour app. It takes you on a tour of over 25 of the most haunted places in America’s most Haunted city, Savannah, GA.
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Taking the dence: Right Steps
How Does ? Your Child Learn Best
Tiger Mothe rs:
Vision Health
Historic Savannah This interactive app enables anyone to take a self guided tour through the rich history of downtown Savannah, GA. It’s easy to use, extremely informative and very entertaining. This app is the first to feature the “Video Pop-Up Tour guide” - a virtual video tour guide that tells you all about each site you visit.
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Access Anytime! Ken’s daughter and inspiration Kaitlyn
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real life advice
Summer’s here: Make lasting memories
Q
by Robin Newman, LCSW
Summer’s here... now what do we do as a family to create memories and have fun?
Advice
The question asked by many parents as the school year is winding down is “now what do we do as a family in order to create memories and have fun?” It’s not easy with a typical child, let alone a special needs one. My personal experience has been that having a special needs child can be easier when it comes to entertainment and creating fun memories. They are high maintenance in the long term, but, low maintenance when it comes to having fun. My children get excited just by taking a ride in our mini van, putting on a movie and bringing a snack. We go bowling at our local bowling alley, take walks at the beach and collect seashells. We also do movie marathons at home, go to see Cirque De Soliel (one of our favorites!), or go for a bike ride (if you are able). We try to frequent the beach right up until my children go to camp. Once at camp, they have their own memories that they can create. We can be our own worst enemy when we limit our thoughts because we may feel it’s too much work. The truth is we just have to get out there and take the risk. If we are excited, our children will be excited.
If we are excited, our children will be excited.
Have a question for “Relationship Rescue”.
Send an email to
Have a wonderful Summer! God Bless, Robin Newman LCSW PC
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advice@parentingspecialneeds.org Please make sure to put “Ask Robin” in email subject line.
When kids cook, they get a taste for teamwork.
Start your week off right: Make Monday family night! Š The Monday Campaigns, Inc.
Keeping Our Children
Safe in the Real World
by Jennifer Agganis & Meme Hieneman
P
erhaps one of the most vital skills parents want to impart in their children is the ability to keep safe in all life situations. Whether crossing a street, shopping in a busy store, working around knives or hot surfaces, or going to the movies with a friend, we might imagine a variety of risky scenarios. We worry that children may not pay attention to their surroundings or engage in behavior that could make them vulnerable like talking to strangers. If we are not careful, these fears can drive us to overprotect and isolate our children, thereby limiting the places they go and the things they do. In doing this, we can further reduce their opportunity to learn the vital skills they need to live in an integrated world. By facing these concerns head-on, identifying skills children need, and using systematic strategies to teach those skills, we can help children stay safe.
There are two broad categories of important safety skills: environmental and social. Environmental safety skills include how to deal with animals (e.g., when and how to approach a dog), fire precautions and stove use, public and pedestrian transportation, and water safety. Skills such as learning to “stop, look, and listen” fall within this category. Social safety skills include staying close to supervising adults, knowing when and how to interact with strangers, and maintaining boundaries in physical relationships. To determine what safety skills our children currently have, and those they need, we must consider all of the environments in which our children currently participate, as well as those in which we would like them to participate. Below is a brief tool for identifying the places a child goes, the people who tend to be present, potential physical and social risks, skills that may be needed, and a child’s current ability in using those skills.
Assessing Your Child’s Safety Where My Child Goes Places
Example: Grocery store
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People
Employees, shoppers
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Potential Risks Physical
Prickly pears, knives High shelves Moving carts
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Social
Wandering off Cashiers with questions
Safety Skills Needed Skills Needed
Ask permission Stay near cart
Child Ability
Grabs items and climbs, fails to attend to his surroundings
Once we have determined the circumstances that could pose safety risks and skills our children need, we parents, and/or others supporting the children, must actively teach those skills. Specifically, a child may need to learn to discriminate between safe and unsafe situations, avoid or leave unsafe situations, and report threats to adults. The following components work well for teaching safety skills.
1.
2.
Point out potentially unsafe aspects of settings in which children participate. For example, we might say “See those prickly pears? They are pointy and could hurt.” We might develop safety rules for different places we go. Videos or pictures may help the children understand. Practice skills for staying safe at home or in other controlled situations. For example, we might have children ask permission before touching items that do not belong to the child. This could include role playing or acting out situations.
3.
Deliver reminders before going into the settings. For example, before entering a store, we might say, “Remember, I need you to walk right next to the cart and ask before touching.” If a child has trouble remembering the rules, visual cues can be helpful.
4.
Reward children for following the safety rules. We want to provide positive feedback and/or other rewards whenever children
abide by the rules and make good decisions. For example, we might give our children special treats at the register if they stay close and ask permission before touching things.
5.
Coach in different environments in which the risky situations tend to occur. For example, we would want to teach the skills in all of the places we tend to shop and generalize them to other situations in which they could be important (e.g., other people’s houses). It may be best to start with easier or more familiar places first.
6.
Gradually reduce the reminders and level of supervision as your child learns skills. As children become more consistent in following safety rules, we can loosen the reins. This might involve, for example, allowing children to wander a bit as long as they stay within the aisle or in eyesight.
Some safety skills are more complicated than others. For example “not talking to strangers” may seem straight-forward, but it requires that a child learn to discriminate between people he does and does not know. Learning to cross the street safely involves looking both directions and deciding how fast a car may be goiTng. Skills like these will in all probability require much more practice. Parents want children to be safe, but also live as independent and fulfilled lives as possible. By following these steps, we may be able to achieve both of these goals. w MAY/JUN 2013
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real life advice
Summer
traveling tips
Q
My child has special needs and we want to take a family trip this summer. What should I do to prepare?
Ask the NURSE
Answer: Doing things different on a trip may seem exciting, but if your child doesn’t handle disruption of his/her routine, it can make a trip hard for everyone. Keeping a routine even when on vacation can help insure the trip is enjoyable for everyone.
by
When traveling there is a degree to which routine disruptions can’t be avoided. To the degree that you can control routines, you should keep them. Keep things as predictable as possible for your child, and know that there will be challenges with disruptions. Here are a few things that can help with routines.
• Bring familiar items like stuffed animals, favorite blanket, pillow, and toys. • Keep bedtimes and wake-up times as close to normal as possible, allowing for time changes. • Consider and plan for meals. • Bring some entertainment item your child enjoys; videos, video games, computer or other device. • Keep a consistent schedule from day to day, if you can. • Talk to your child each morning about what you’ll be doing, and then each night talk about what you’ve done. If you are flying, you will need to consider additional items. How will the airline handle your child’s equipment? What can come on the plane and what cannot. Considerations will need to be made for oxygen, medications and food. Are treatments, and/or special feedings, or meals, required while on the plane? To provide safe air travel with your special needs child, you should contact the airline. Check out their websites or call them for more information. DISCLAIMER: The contents of the Ask the Nurse column (“Column”) such as text, medical information, graphics, images and any and all other material contained in the column (“Content”) are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your (or your child’s) physician or other qualified health provider with any questions you may have regarding a medical condition. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY IN SEEKING CARE BECAUSE OF SOMETHING YOU (OR YOUR CHILD) HAVE READ IN ANY MEDICAL LITERATURE!
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Keeping a routine even when on vacation can help insure the trip is enjoyable for everyone.
Have a question for “Ask the Nurse”.
Send an email to
advice@parentingspecialneeds.org Please make sure to put “Ask the Nurse” in email subject line.
I learned late in life “that heart disease is my greatest health threat, which is why I want every woman to know the truth – that heart disease is their number one killer.” Star Jones wants you to know that more women die of heart disease than all forms of cancer combined. This killer isn’t as easy to see and is often silent, hidden and misunderstood. Join Star to stop the No. 1 killer of women. We can be the difference between life and death.
Star Jones, Heart Disease Survivor and National Volunteer for the American Heart Association
Uncover the truth about heart disease and how you can help at GoRedForWomen.org.
©2011, American Heart Association. Also known as the Heart Fund: TM Go Red trademark of AHA, Red Dress trademark of DHHS. 12/11DS5431
a
An Ode To the Exceptional Mom by Chynna Laird
L
ast week I was so excited: the weather was finally getting warmer, the sunlight beamed in our windows (maybe a little too early, but, it’s still nicer than starting and ending the day in darkness), and all of the snow had almost disappeared. I even saw a few tiny sprigs of green poking out of the spots in the garden where I had planted lily bulbs and a few perennial vegetable seeds last fall. Spring was finally here, or so I thought...
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fter a week of beautiful sunny, warm weather, we woke up to a small snowstorm this past weekend. Not unusual for midApril in Alberta, but still, how frustrating! I covered up my little sprouts as best I could, dug out the winter gear again and tried to be optimistic that the storm would be winter’s final appearance. Actually, it sounds a lot like what we do as exceptional parents doesn’t it? We celebrate all the precious little gifts we receive, then do what we can to wade through the storm when trouble arises. Spring is also a time of renewal and hope, as well as a sign of good things to come.
May is a celebration, not only for the kick off to spring, but also of mothers. So I thought I would write a little Ode—from one exceptional Mama to another—to remind all the moms out there of five things to help you be your whole you:
~ Love who you are. You are a woman with many layers blended together to create a whole you. Tap into each of those different layers once in awhile and remind yourself that there is more to you than being a ‘special needs mom.’ ~ Learn to let go. It’s easy to hold onto things and obsess over them. It’s also very easy to blame ourselves when things go wrong or whenever our exceptional child has had a bad day. Deal with things when they happen as best as you can but then let go of those negative thoughts to make room for the wonderful things that are happening.
~ Rediscover your creative side. Remember how much you loved dancing, writing poetry, art or sculpting? Do you have a novel tucked away that you ‘put aside for now’ while your thoughts needed to be with your child? Go back to those things that move your thoughts to something more creative. Even if you just do it for a short period of time each day it’s a fantastic way
Photos courtesy © andres rodriguez/ photoxpress.com
to recharge your batteries and channel your energy into something positive.
~ Keep moving forward. I often tell people I am like a shark. I need to keep moving forward because if I stay still too long, I drown in my thoughts, stresses and worries. Remember that you are strong and doing the best you can. Learn from every experience—good and bad—but don’t stand still looking back; take those experiences with you as you move toward where you need to be.
~ Connect with others. Reach out to other parents with exceptional children but also reach out to those who aren’t. Those in the same situation can give you an understanding shoulder to lean on, direction when you need it, and connections to important resources. But those who aren’t can help you tap into those other layers you forget about sometimes and help reconnect you to your whole self. I, like so many other exceptional parents, often forget about ‘me’. It seems selfish to think about myself—my needs, my wants, and my hopes and dreams when my children need me so much. But you can’t be everything to your child if you aren’t everything to yourself first. So, on Mother’s Day, and every other day, I hope you’ll remember to love, learn, rediscover, keep and connect. Right now I’m looking out my patio doors. The snow that blanketed our neighborhood yesterday is melting away in the warm sun. By tomorrow we’ll, hopefully, be able to put the winter gear back downstairs. And all of my seedlings survived the mini Spring snowstorm. I’m going to take that as a sign of good things to come—for me and for all of you. w Chynna Laird – is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters Jaimie, Jordhan, and Sophie and son, Xander. Visit her at www.lilywolfwords.ca
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your life help
Sharing
realfinds
Safe Keepings
hassle free
EZ Ice Cream Holder
Summertime is a time for new and exciting adventures with you and your loved ones. The only problem is that often times these new adventures involve getting a little wet. Whether you’re kayaking, or going to a water park, the only obstacle everyone faces is what to do with your money and credit cards? Well, thanks to the cool find called Witz Cases our problems are solved. Witz cases are a waterproof and durable carrier. This helpful find has a necklace attached so you can put it around your neck or tie around your wrist. No more putting your money in a sock or worrying about buying an expensive locker for only two objects.
We all know that the best way to cool off during the heat of summer is by enjoying a cold ice cream cone with friends and family, however, ice cream cones aren’t necessarily the cleanest of things to eat. Especially if your child can’t properly grip the cone or Popsicle stick, it turns a nice idea into a sticky and messy pain. That’s why EZ Ice Cream Holder is the way to go this summer; this cool find makes eating ice cream cones and popsicles easy and hassle-free for you and your little one. The EZ Ice-cream Holder has a firm grip and is dishwasher safe. It is ideal for children with disabilities who struggle to firmly grip ice cream cones, round sticks or flat sticks. www.ezicecreamholder.com
Camp Labels Camp season is just around the corner which means tees, tennis shoes, sleeping bags and gear all have to be labeled. kidecals has designed a series of nostalgic camp-inspired designs that are perfectly sized for Happy Camping, as well as oodles of fun graphics to compliment everything from sports camps to vacation label it! bible school. Labeling your stuff, helps make sure that what’s Available at lost will be found. These are design-driven www.kidecals.com customized name and organizing labels that are waterproof, dishwasher proof, dryer safe AND removable. Create your own design in minutes and add personalized name labels to clothing, water bottles, sports gear, potluck dishes...whatever! Kidecals won’t harm surfaces and they won’t fade in the wash, sun or dryer.
www.witzsportcases.com.
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organized your life
Summer CAmP
ORGANIZATION by Susan Parziale
S
ummer fun for the special needs child requires lots of investigating and early registration. There are programs available to give your child some summer fun, but, they fill up very fast and you need to have done your research ahead of time on the programs that will appeal to your child. The first telephone call I would suggest is to call your local support center (Autism Support Center, The ARC, National Association of the Deaf, etc.) and speak to someone in their Recreation Department. Ask them to review the list of summer programs available for your child’s age group and if they sound like a program that your child would like. Then, register over the telephone right away! There is also the option of a residential special needs camp for children and young adults with mild to moderate learning and developmental challenges. These camps have day long activities for your child to keep them busy. Residential camps are also fully staffed
with aids and counselors. The website Family Village is dedicated to listing day and residential camps: http://www.familyvillage.wisc.edu/ leisure/camps.html. Again, these camps also fill up fast, so register ASAP! Residential camps can be expensive; however, do not let that stop you from enrolling. You might be able to have the entire cost (or a portion of the cost) paid by your district as part of your IEP. The benefits of attending a day or residential camp for special needs children are the same for any child: they will build confidence and independent living, exercising and many fun activities, socializing with other children, and making friendships! Plus, parents of special needs children need a break and sometimes our children might just need a break from us. Wishing you all a happy and safe summer!w Susan Parziale is a certified Professional Organizer. She is also a mother to 8 year old daughter with Autism. Visit www.susanparziale.com
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Mommy’s Timeout : Take a time out and use V isualization Meditation to relax. Picture yourself here sailing in Bora Bora. Feel the tranquility. Take a couple of deep breaths and begin to let go of any stress. Sailboat resting in a calm lagoon as seen from high above in Bora Bora. Photos courtesy of Tahiti Tourisme
breathing space your life
Letting go – Allowing Your Child to be independent – Accepting that they may fail: You pray, plan, and hope that your child can become independent. However, why is it so hard, when they want to claim it? by Cynthia Carr Falardeau
M
y husband called me aside and in a low firm voice said, “You have to let him go and grow! Stop hovering! Let him make his mistakes! Trust that he will select good choices!” I am not sure what annoyed me more, an intervention from my own husband, or the fact that he was right! Oh how I hate it when he calls me out on the mediation mat! After all, whose side is he on? Yes, it was another moment fit for reality television. My husband was reeling me in. He was reminding me that I needed to release my “Mama Bear” claws from our son. Quite simply, I needed to let go! Two words sum it up: It’s hard! I feel like I have spent the past ten years advocating for our son’s chance to succeed. We have sacrificed a lot personally, professionally and financially. We wanted to secure our son’s right to become independent. Why is so difficult? After all, he can talk, participate in “gen-ed” classes, and has friends on his own?
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At this point in his development, I imagined that I would be doing back flips. I also envisioned cutting up the Autism magnet on my car. All of these activities would be done with great glee! Instead of celebrating his acquisition of language, from ages 7 through 10, I am terrified of his confidence and social skills. Yes, I should be kissing the pastor’s toes for the prayers and the tearful meetings that lead to his confidence and learned compliance. So if its’ all so wonderful, why in the heck am I beside myself? It all lies in the word “control.” Yes, I have proudly advocated like one crazy Mama Bear! I have been keenly set on a warpath for the past 8 years. I am proud of the obstacles and people we have, literally, flattened. It is a battle that I attacked with every fiber and financial resource we had. Here is the BIG question: Now that our son is beginning to test out of support services – why am I terrified? I mean, there are the physical differences we will always work to overcome; he is missing his right hand and forearm. However, the sensory, behavioral and emotional differences are
becoming issues of the past. But, now the hardest task is at hand – letting go; cutting the cord; severing the tie - WHATEVER! I know I should bask in his self-confidence and growing network of friends. However, I am so afraid. I want to protect him from every hurt. I know, from my own experiences, that there are lessons in every step and failure. Here is what I have learned. I hope it will also inspire you to let go and give your child the opportunity to become independent.
©jeremyhowell/photoxpress.com
Steps to Independence – How to make it happen: 1.
Encourage them to try new things:
We have tried every sport. None of them have been successful. You might think this tactic was a failure, but, the truth is that each time our son gained new friends. These children and adults gain compassion for our son’s differences. We will be out somewhere and children will run up to our son like he is a rock star and say…”Do you remember me?” We have had to work with our son to respond, “Oh! Of course I do!” It’s a social lesson and one that teaches validating another person’s feelings.
2. Trust in the fact you have taught them well: Another title for this one is – you wanted typical behavior – now you have got it – so count your Blessings! Recently, our son was put up to a dare to kiss a girl on her chest. When she did, she smacked him. At first I was beside myself. I had the phone on speed dial to the Superintendent of Schools! My husband calmed me down. He pointed out that this was typical “kid stuff” and a chance for us to talk about
what happened. Lots of deep breaths later, our son got it, and so did I.
Lessons Learned from a Mama Bear: 1.
Remember what you wished for:
Look back at your diary or ask your child’s therapist. It goes back to that old saying, “Be careful what you wish for! You may just get it!’
2.
Utilize your support networks:
Reach out to those who know your child best. Teachers, therapists, parents and other students will all encourage you and also point out, “Oh, Mrs. Falardeau, Wyatt already does that!” They often see your child’s independence before you do!
Allowing the Process to Continue (Despite Set Backs): 1.
Remember, it’s a process: Think back
on all of your early mistakes. Was your mother or father there to witness all of them? I was one of four children. Thankfully, for me, that was not the case. However, for my son, the long awaited wonder baby, he has had my husband and I documenting his whole life. As hard as it is – I have to ditch the Facebook feed and my camera phone. With the support of my networks – I succumb to destiny and allow the cards to fall.
2. Success is in the unplanned moments: It’s hard for me to admit, however, when I let go I…I let my child live. You see, if he is truly going to be independent, he has to experience those spontaneous moments. In an instant, he will surprise me, and even better, he will flourish. Photo courtesy ©enigmachck1 /flickr.com
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T
Isabel
Tiny Light
Microcephaly & Polymicrogyria www.cortfoundation.org
Story written by Jayne Akizuki Photos by Images Captured by Matt Brennan Photography www.matt-brennan.com
w w w. t h e t i n y l i g h t . c o m
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iny Light Isabel is indeed tiny – and tough. She wasn’t expected to survive beyond birth, but she was able to breathe and feed on her own right from the start. And, she has been battling for progress ever since. At 28 weeks into the pregnancy, parents Miranda and Jared were told their baby had microcephaly, a condition in which the head circumference is small because the brain has not developed properly, and polymicrogyria, a malformation of the brain’s surface. They were shocked because the pregnancy had gone so well. Their biggest fear was that they would lose their precious baby before she was even born. But, more than a year later, Tiny Light Isabel is still alive and fighting with the help of her parents and physiotherapists. She listens intently to the world around her, loves to try to do new things, and can distinguish between the touch of different people. Her parents hope that one day Isabel will be able to play, see and smile. “She may walk, may talk, or she may not. It all depends on how much she wants to learn,” says Miranda. She tells other families not to give up,“Hold on for as long as possible. It may seem really hard, or that you can’t do it. Then, one day, you will realize that your child is your everything, and just because they have a disorder does not mean they’re any different”.
specialfocus “One father is more than a hundred schoolmasters.� ~George Herbert
Raising a child with
Microcephaly & Polymicrogyria
Dreams Made True New Wonders for Walking Special Mobility & Recreation Resources MAR/APR 2013
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Dreams Made True
New Wonders for Walking
D
aleney, 12, has suffered from cerebral palsy since she was born. daleney has always been faced with obstacles and limitations but she has constantly strived to make improvements in her own way. at first doctors didn’t think delaney would ever be able to walk, but with the help of the Bioness l300 device, delaney is now walking with forearm crutches instead of a walker, giving her confidence and allowing her to be more independent. We had the pleasure of speaking with daleney’s Mother, dayna teske, and she shared with us her journey of how she first learned of the Bioness l300, how she was able to help her daughter’s mobility and how she was able to make dreams come true.
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mobility special focus While watching Ellen... Sometimes, when you least expect it, sparks of inspiration can occur. One day, when Dayna was home on leave from work, she was watching the Ellen DeGeneres show and saw an interview with Abbey Curran. Abbey was Miss Iowa USA, 2008, and just happens to be the first disabled participant to compete in the Miss USA Pageant. Abbey created the Miss You Can Do It Pageant. Its message is that “you’re okay and you’re beautiful”. So Dayna taped the show and when Daleney came home from school Dayna had her watch the show. She asked Daleney if she would like to participate because they were accepting entries. She said yes and they attended the July 2008 pageant in Kewanee, Illinois. While attending the pageant, there was another young lady, about a year older than Daleney, who was wearing the Bioness cuffs. They became very curious and wondered if this might be something that could help Daleney. So, they asked lots of questions, spoke with the young
girl’s parents, took some pictures and then went home and talked with their doctors. The research took about one year and in 2009, when Daleney was 8 years old, she went to a rehab hospital that gave the family a trial. The Bioness cuffs were not covered by insurance at the time Daleney started using them, and were considered “experimental”. However, use of a Bioness system in the clinic setting can be billed by your healthcare professional and often reimbursed if it is medically necessary (while we can’t guarantee insurance reimbursement when a Bioness system is purchased for home use, your health insurance plan may cover some or all of the cost of a Bioness system and are evaluated on a case-by-case basis). The cost for the Bioness system is not cheap. Dayna explained that they were fortunate that a new group in Iowa called Iowa Able Foundation had been established to offer an alternative financial solution by providing low interest loans, with flexible terms, to help individuals
increase their independence at home, at work, and in the community. The statewide, nonprofit program will loan funds for any item, piece of equipment or product that is used to improve an individual’s quality of life (please check in your state to see if a program like this exists).
A new way of walking... The next logical question was “how long did it take for Daleney to get used to them and what happened next”? Dayna explained that when she first started wearing the cuff, she started wearing it over the summer for a couple of hours a day to get used to it, because it was working (stimulating) her muscles in a different way. By the time school started in August, she was able to wear it for 8 hours a day. Dayna said, “for example, if you are tapping your toe, you can feel it is stimulating the muscles in the front of your leg as well as in the back of your leg in your calf. It is stimulating two points in your leg. These are not muscles she could activate on her own prior
Bioness L300 Foot Drop System is the first FDA cleared neurostimulation device of this kind for use with children. The L300 Foot Drop System can help children with Cerebral Palsy, Stroke or Traumatic Brain Injury regain mobility and lead more independent lives.
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to wearing the Bioness”. Prior to the cuff, Daleney’s ankle was in a solid AFO and she never had any range of motion in her ankle. When she walked it was more like a march. According to one of Daleney’s therapists, Chris Staub, DPT,CGFI,MBA, and Owner of Active Performance Physical Therapy, “the Bioness L300 allows her foot to go through range of motion. AFO is basically a giant hunk of plastic between her foot and the ground. It does not allow very much adaptive movement. So, if she goes on anything other than a straight level surface, the AFO does not really allow for any changes in movement”. The first time Delaney put the cuff on in Lincoln, Nebraska, she was tapping her toe and moving her foot. This was something she had never done before in her life. Dayna was amazed and said “look at your foot moving up and down and your toe moving”. When the technician said to Dayna, “I turned it off a few minutes ago”, Dayna realized that Daleney had made that connection in her brain and now she is doing it! That was the very first time Delaney had put on the Bioness cuff. The family finds that the more she wears it the more her muscles improve. Dayna explained that the cuff needs to be programed and adjusted by a trained Bioness technician every four to six weeks and she still requires Botox injections every six months. Delaney is able to adjust the device up “a couple degrees” to help her lift her ankle or, if the shock feels too strong, she can also adjust it down slightly to meet her needs. They loved the Pediatric size cuff and feel it has made a huge difference because it fits her properly and helps to stimulate the appropriate muscles. This has also given Daleney more self-confidence because she is able to do more and to walk around less restricted. She is now 12, very intelligent, and able to “talk the terminology” when it comes to adjusting the cuff…. she knows it inside and out.
New dreams coming true David and Dayna Teske, after being inspired by their daughter, Daleney, founded a non-profit organization called Dreams Made True using her initials (DMT) in the name. Dreams Made True is dedicated to enhancing the lives of girls with special needs, ages 5-25, and providing their families the opportunity to connect with, and learn from, each other. These young ladies will have the chance to unite and showcase their unique abilities through the beauty pageant format. In fact, the fourth annual Dreams Made True Pageant is July 19-20, 2013, proving that you never know where the road might lead you. w
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Get Listed...
PSN RESOURCE DIRECTORY LaNdeez WheeLchair PO Box 5729 Santa Monica, CA 90409 TEL: 800-411-7789 FAX: 310-392-3874
8630 Fenton Street, Suite 930 Silver Spring, MD 20910 TEL: 800-227-0216 FAX: 301-608-8958
The Landeez all terrain wheelchair allows you to enjoy the health benefits of a variety of outdoor activities. Great for trips to the beach, strolls in the forest, and for accessing unpaved areas in your neighborhood. The Landeez rolls over sand, snow, gravel, and soft soils with remarkable ease.
AbleData provides objective information on assistive technology products and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the U.S. This free service is funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education.
aBiLiTY PLUS 855 Hanover St. #497 Manchester, NH 03104 TEL: 800-287-8415 FAX: 888- 552-1583 To offer increased access to athletic and recreational opportunities for persons with physical and/or cognitive disabilities that will create freedom, promote independence, support inclusion and help those individuals and their families discover their full social, mental and athletic potential. Special Needs.
coNvaid 2830 California Street Torrance, CA 90503 TEL: 310-618-0111 Fax: 310- 618-2166
Go to parentingspecialneeds.org/ resources
aBLedaTa
aLTerNaTiveS iN MoTioN 201 Matilda Northeast Grand Rapids, MI 49503 TEL: 616-493-2620 FAX: 616-493-2621 Alternatives in Motion strives to provide quality used wheelchairs, and routine wheelchair repair services to individuals and families demonstrating financial need; in order to promote healthy, independent, and active lifestyles. The vision of Alternatives in Motion is that everyone should be able to participate in this free society and not be limited by mobility needs due to disability or lack of physical ability.
Convaid’s core mission is to provide special needs children, adults, and their families the highest quality compactfolding lightweight wheelchairs. Our complete range of custom mobility products seeks to improve their lives and that of the caregivers, by enhancing capabilities and promoting independence. Convaid has grown to become the world leader in compactfolding pediatric wheelchairs and other mobility aids; and we continue to innovate for the future.
KidS FLY SaFe careS
eaSY STaNd
FUNcTioNaL TheraPY SoLUTioNS LLc
Altimate Medical, Inc. 262 W. 1st St. Morton, MN 56270 USA Toll Free: 800-342-8968 Fax: 507-697-6900
TEL: 800-299-6249 CARES Child Aviation Restraint System is designed specifically for aviation use for children age 1 and older who weigh between 22 and 44 pounds. These youngsters are old enough to be in their own seats, but are too small for the seat belt alone to protect them and provide the safety they require during airplane travel.
4343 Loyola Ave Alexandria, VA 22304 TEL: 571-882-1FUN
SpEciAl ADvErTiSiNg SEcTioN
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MoBiliTY & rEcrEATioN
NMEDA Transportation is the key to freedom and NMEDA is the key to quality transportation
When searching for an adaptive mobility specialist to assist with your family’s mobility needs, NMEDA should serve as your stamp of approval because all NMEDA dealers offer:
NMEDA sponsors National Mobility Awareness Month in May where we educate, encourage and show the world how people with disabilities can live active, mobile lifestyles with the assistance of mobility solutions and wheelchair accessible vehicles.
• Individual in-person equipment evaluations • Brand name and quality products • On-site local support for sales and service • Factory supported warranty systems • Quality Assurance Program accredited technicians • 24-hour local emergency service
National Mobility Equipment Dealers Association (NMEDA) for more information contact them at 866-948-8341, info@nmeda.org, or www.NMEDA.com www.MobilityAwarenessMonth.com
Your family deserves the best. Your Family Deserves NMEDA.
Caring parents trust NMEDA members to provide the quality wheelchair accessible vehicles and solutions their children need to overcome mobility challenges. NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of your children by delivering unparalleled service in mobility solutions. Only NMEDA offers parents of children in need: • Individualized In-person Evaluations • On-site Local Service and Support • Quality Assurance Program • Accredited Technicians • 24-hour Emergency Service When it comes to quality and safety in mobility, your child deserves the best. Your child deserves NMEDA.
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NMEDA is the only organization for the adaptive mobility industry that monitors its members to ensure they abide by the safety standards of the National Highway
Traffic Safety Administration, Federal Motor Vehicle Safety Standards, and NMEDA’sʼ Quality Assurance Program (QAP) – the only program in the industry that promotes quality, safety, and reliability.
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he National Mobility Equipment Dealers Association (NMEDA) is a non-profit organization of mobility equipment dealers, manufacturers, driver rehabilitation specialists and other professionals dedicated to expanding mobility options for people with disabilities. The organization promotes and supports members engaged in the modification of quality transportation and wheelchair accessible vehicles. Over 600 international members work to provide safe and reliable adapted transportation solutions to help build the road to independence.
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Locate a NMEDA Member Dealer near you at NMEDA.com or call 866-948-8341 for mobility solutions.
National Mobility Equipment Dealers Association | Life Moving Forward
SpeCIaL aDveRtISIng SeCtIon
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MoBILItY & ReCReatIon
BIONESS L300 Foot Drop System Can Help Children Regain Mobility and Lead More Independent Lives.
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or children affected by foot drop as a result of neurological conditions such as cerebral palsy, mobility can be a daily struggle making it difficult to enjoy the childhood activities we often take for granted. Bioness is pleased to announce the availability of the award-winning L300® Foot Drop System to help children walk more naturally and increase muscle strength. The L300 can provide children with increased confidence and independence to engage in activities alongside their siblings and friends. The L300 is the first FDA cleared neurostimulation system for children with foot drop as the result of neurological conditions such as cerebral palsy, stroke, traumatic brain injury and spinal cord injury.
Worn on the leg, the L300 has three main parts: a small wireless sensor in the shoe, an ergonomic leg cuff worn just below the knee and a hand-held remote control. The three components use wireless communication to “talk” to each other. When a child initiates a step, the L300 sends low-level electrical stimulation to the nerves in the lower leg which control the muscles responsible for lifting the foot. By lifting the foot at the appropriate time children may walk with increased confidence, improved speed and reduced fatigue. The system’s advanced technology gait sensor automatically senses your child’s foot position, walking speed, and changes in terrain.
Bioness provides neuromodulation technologies that help improve lives and restore function for those living with neurological disorders. The small L300 is now available for purchase. Individuals interested in more information can contact Bioness at 800-211-9136, Option 2 or by visiting www.bioness.com
PSN RESOURCE DIRECTORY DolPhiN huMAN therAPy GrAND cAyMAN DhtGc
AcceSSible JourNeyS 35 West Sellers Ave Ridley Park, PA 19078 TEL: 800-846-4537 FAX: 610-521-6959
Grand Cayman TEL: 305-704-7041
Accessible lifestyle vacations are for slow walkers, wheelchair traveler families and friends. Travel services include accessible vacation planning, tours, group cruises, individual cruises, licensed travel companions and travel resources.
AutiSM oN the SeAS 15 Oak Glen Dr. Shelton, CT 06484 TEL: 800-516-5247 Vacations for Adults and Families living with Autism, Down Syndrome and other Related Disabilities. We’re dedicated to providing vacation and travel options for individuals and family’s living with Special Needs.
boy ScoutS of AMericA 1325 W Walnut Hill Lane Irving , TX 75015 TEL: 855-870-2178 The basic premise of Scouting for youth with disabilities and special needs is that they want most to participate like other youth—and Scouting gives them that opportunity.Thus, much of the program for Scouts with disabilities and special needs is directed at (1) helping unit leaders develop an awareness of disabled people among youth without disabilities and (2) encouraging the inclusion of Scouts with disabilities and special needs in Cub Scout packs, Boy Scout troops, Varsity Scout teams, Venturing crews, and Sea Scout ships. resources.
SeArch beyoND ADveNtureS 6267 Bent Pine Drive, Suite 1124B Orlando, FL 32822 TEL: 800-800-9979 Search Beyond Adventures provides allinclusive escorted vacations for travelers with disabilities and special needs, ages 17 and up. Most of our travelers have developmental disabilities, although some participants may have only a physical disability.
(AySo viP) AMericAN youth Soccer orGANizAtioN 9750 S. Vermont Ave., Suite 200 Torrance, CA 90502 TEL: 800- 872-2976 The AYSO VIP (Very Important Players) Program provides a quality soccer experience for children and adults whose physical or mental disabilities make it difficult to successfully participate on mainstream teams.
DiSAbleD SPortS uSA 451 Hungerford Drive, Suite 100, Rockville, Maryland 20850 TEL: 301-217-0960 FAX: 301-217-0968 Providing national leadership and opportunities for individuals with disabilities to develop independence, confidence, and fitness through participation in adaptive sports.
MOBILITY & RECREATION
Surfer’s for Autism 2013 Summer Schedule
May 18: 5th Annual Treasure Coast Surfers For Autism Beach Festival. Location: Stuart Beach, Stuart, FL June 8: 5th Annual Space Coast Surfers For Autism Beach Festival . Location: Lori Wilson Park, Cocoa Beach, FL July 13: 3rd Annual Bay Area Surfers For Autism Beach Festival. Location: Municipal Beach, Treasure Island, FL
August 3: 4th Annual Inlet Surfers For Autism Beach Festival. Location: Lighthouse Point Park, Ponce Inlet, FL
August 17: 4th Annual First Coast Surfers For Autism Beach Festival. Location: Flagler Beach Pier. Flagler Beach, FL September 21: 4th Annual North Coast Surfers For Autism Beach Festival. Location: 14th Street N. Beach, Jacksonville Beach, FL
the MirAcle leAGue buDDy cruiSe, iNc PO BOX 162 Lithia, FL 33547 TEL: 305-704-7041
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1506 Klondike Road - Suite 105 Conyers, GA 30094 TEL: 770 760-1933 FAX: 770 483-1223
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All dates and locations subject to change without notice. To see the complete 2013 schedule and registration requirements please visit Surfer for Autism website: www. surfersforautism.org
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MOBiliTY & recreaTiOn
TOPSOCCER (The Outreach Program for Soccer)
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lorida Youth Soccer association (FYSa) is a non-profit, educational organization dedicated to fostering the physical, mental and emotional growth and development of Florida’s youth through the sport of soccer at all levels of age and competition. Our job is also to make it fun and instill a lifelong passion for the sport in young players. One of the programs the Florida Youth Soccer association is dedicated to brings this mission to life to a very important platform. TOPSoccer through Florida Youth Soccer association is a program designed to reach and meet the needs of children aged 5-19 years old with physical
and/or mental disabilities in Florida. The program caters to player development rather than competition. TOPSoccer takes the kids off the sidelines and allows them to participate in the game of soccer. Through the efforts of US Youth Soccer, FYSa, and other members of US Youth Soccer the children participating in the TOPSoccer program will have the opportunity to develop a sense of belonging on and off the soccer pitch as well as learn the value of being part of a team, improve their self-esteem, fitness and social skills. But most importantly, enjoy the great game of soccer!
TOPSoccer takes the kids off the sidelines and allows them to particpate in the game of soccer. TOPSOCCER invites you to contact them at (863)268-8220 or info@fysa.com or www.FYSA.com
TOPSoccer, designed to reach and meet the needs of kids 5-19 with physical and or mental disabilities
SpeCiaL advertiSing SeCtion
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MoBiLitY & reCreation
Special Olympics Changing Lives through Sport
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pecial olympics is a global organization that unleashes the human spirit through the transformative power and joy of sport every day around the world. through programming in sports, health, education and community building, Special olympics changes the lives of people with intellectual disabilities and raises awareness about their talents and abilities - as well as the injustice, isolation, intolerance and inactivity they face. real Sports: Special olympics provides high quality training and competition in an inclusive culture that encourages athletic excellence, rewards determination, emphasizes health and celebrates personal achievements. Health: Special olympics is committed
to ensuring ongoing access to quality, community-based healthcare that promotes the overall well-being of people with intellectual disabilities. Special olympics is the largest public health platform for people with intellectual disabilities in the world, partnering with healthcare practitioners globally to offer free screenings at competitions, games and other venues. education and Building Communities: in order to promote acceptance, friendships, positive attitudes and behavioral changes, Special olympics equips young people and adult influencers with effective tools and training to foster inclusive action and attitudes within their schools, social networks and communities.
SpecialOlympics.org
Let me win. But if I cannot win, let me be brave in the attempt. Special Ol ympics Athlete Oath
Special Olympics unleashes the human spirit through the transformative power and joy of sport. It currently serves 4 million people with intellectual disabilities in 170 countries.
Special Olympics best contact information is website or social media: www.specialolympics.org www.facebook.com/SpecialOlympics www.twitter.com/SpecialOlympics
A to ZOO
Accessibility at
by Susan Hamilton
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ow can you translate the moo of a cow to a child who cannot hear? How can you describe a goat to a child who cannot see? If you need quiet spaces, how can you still enjoy a destination that attracts as many as 10,000 people a day? These are the questions that the staff at the Philadelphia Zoo, along with parents of children with special needs, a volunteer committee of professionals, and funders, considered as they began the development of a new children’s zoo at America’s First Zoo. Their efforts are making it easier for families of children with special needs to participate in one of the Philadelphia Zoo’s most engaging, educational and entertaining experiences to date; a new wildlife academy that teaches children, the future stewards of our environment, how our actions can positively impact animals across the globe. MAY/JUN 2013
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KidZooU: Hamilton Family
Children’s Zoo & Faris Family Education Center opened on April 13 in Philadelphia, and with the help of area special needs community partners including: the Center for Autism Research at The Children’s Hospital of Philadelphia, the Kinney Center for Autism Education and Support at Saint Joseph’s University, Overbrook School for the Blind, Pennsylvania School for the Deaf, and the T21 Club of the Delaware Valley, an organization that supports awareness and inclusion of people with Down syndrome, the children’s zoo’s dynamic displays and interactive learning experiences are accessible to children of all abilities.
The following community partners participated in the development of KidZooU:
A.J. Drexel Autism Institute • ASCEND – The Asperger and Autism Alliance for Greater Philadelphia • Autism Inclusion Resources • Children’s Hospital of Philadelphia Center for Autism Research • Deaf-Hearing Communication Centre, Inc.• Overbrook School For the Blind • Pennsylvania School for the Deaf Saint Joseph’s University Kinney Center for Autism Education and Support • Sohn Grayson Autism Consultants • Springbrook Farm • T21 of the Delaware Valley
“The opening of the new KidZooU is an extremely exciting development for us as we unite a world-view education center with an up-close and personal children’s zoo to form a new wildlife academy,” said Vikram Dewan, president and CEO of the Philadelphia Zoo.“KidZooU is designed to appeal to both toddlers and tweens alike, and will be used as a platform to mentor the next generation of protectors of our planet.” Elements of KidZooU, from a focus on domestic rare breed animals to the expansion of the Philadelphia Zoo’s new animal travel and exploration trail system, are serving as models for other zoos, and now the universal design elements that are making the Philadelphia Zoo more accessible could be as well. “It is important that children of all backgrounds and learning abilities have a place where they can learn about animals and why protecting our environment is so important to the preservation of animal species,” said Dick Faris, who, with his wife, Marilyn, were instrumental in the development of KidZooU. “The
education of learning challenged children has always been dear to our hearts,” Mr. Faris said at the preview for KidZooU, which was attended by students of the Pennsylvania School for the Deaf, where his mother was a longtime teacher. “My late mother was a teacher’s aide for hearing impaired and autistic children,” he said,“so I discovered early on the learning challenges these children face. I am so happy that experts in the field and parents of challenged children participated in the design.” Planning discussions with community partners touched on topics such as noise and tactile sensitivity, terrain, helping families plan their visits in advance, and how best to approach a lost child. Ideas offered included everything from making water facilities convenient, clean and accessible to children who use G-Tubes for feeding, to identifying secluded spaces where families can get away for a break; from captioning videos to adding amenities such as durable, adolescent-sized changing tables in family restrooms. Other suggestions included opening the Zoo early for special needs families, accommodating special diets, and
embracing high-tech solutions such as touch-screen picture menus for ordering. “Deaf students are not that much different in the way they learn,” said Prinnie Eberle, a high school teacher at the Pennsylvania School for the Deaf. They need a lot of visual elements, things at their level, and to be able to touch and manipulate things. “That’s the way they communicate,” she said. Vibrating speakers can allow visitors to feel animal sounds, and using lights in exhibits, not just sounds, can also benefit the hearing impaired. KidZooU’s interpretive signage identifying animals such as ducks, pigeons, chickens, horses, goats and sheep, features Braille, sign language and the KidZooUPix symbols for individuals on the autism spectrum and very young children. QR codes allow visitors to use their smart phones to access information in different languages. Exhibits, from the 20-foot-
high centerpiece goat climbing tower to the popular Barnyard animal contact yard, are accessible to wheelchairs, walkers and special needs strollers, and buildings feature power doors. A spotting scope that soars 18 feet allows visitors to observe monkeys in the Treetop Trails. “There are some concepts that we need sight for, and that’s OK,” said Jackie Brennan, Education and Professional Development Director of the Overbrook School for the Blind. Children can’t touch a tiger, for example, but we can describe it, talk about the colors and the size, and say it is shaped in the same way as a cat, she said. Walking a child from the head to the tail of a sculpture can help explain how big the animal is in relation to the child. How do you describe a goat, then? Depending on the features, we can mention if it has horns, Brennan explained, and relate the beard to
the beard of a dad. Features, size, behaviors, noises can all be described. We can say,“You have two legs and they have four,” she added. Zoo staff and volunteers have received training on assisting families with special needs. For example, being in an open-air environment and not aware of what is around you can be intimidating to a child with a visual impairment. Brennan and her colleague, JoAnn McNamee, Elementary School Program Coordinator at Overbrook School for the Blind, discussed with the staff ways to bring the animals to the child in a special area that is quieter and not so overwhelming. Something else that can make the experience not so overwhelming is preparation. Deb Dunn, Esq., is Director of Outreach and Study Recruitment for the Center for Autism Research at The Children’s Hospital of Philadelphia and the mom of a child diagnosed with an autism spectrum disorder. “If it’s not
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accessible to them, we really cut out off a learning opportunity for them. One bad experience can make it difficult for the child to try again.” If prepared, they can enjoy the experience, she said. A just-launched Website – kidzoou.org – created in partnership with Dr. Michelle Rowe and the Saint Joseph’s University Kinney Center for Autism Education and Support, allows for just that, with three important pre-planning tools: an interactive visual scheduler, a social story, and an accessibility map. The interactive visual scheduler enables visitors to choose in advance the exhibits and animals they want to see and then print their custom visual schedule. A three-part social story uses pictures and narrative to help families anticipate the KidZooU experience with topics including Preparing for my Zoo trip, Arriving at the Zoo, and Visiting KidZooU. A downloadable Quiet Spaces Map identifies indoor and outdoor quiet spaces at KidZooU and throughout the Zoo grounds. It’s a great place to start the planning of your own Zoo visit and to gain more information on KidZooU’s multisensory experiences, including visual, auditory, tactile and gross motor activities. “People of all ages enjoy the zoo,” said Mr. Faris,“but it is our children who love it the most and benefit the most from being here.” Thanks to the efforts of the Philadelphia Zoo and the special needs community partners that worked along side them, the new KidsZooU is inviting and accessible to all of our kids. w
If You Visit KidZooU: Hamilton Family Children’s Zoo & Faris Family Education Center is the newest addition to America’s First Zoo. The Philadelphia Zoo is located at 34th Street and Girard Avenue in Philadelphia’s historic Fairmount Park. For more information visit philadelphiazoo.org
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Highlights at KidZooU Goat and Kid Tower Goats are super climbers, and in an example of animal interaction throughparallel play, KidZooU features a 20-foot-high goat climbing tower, accessible through a ramped pathway, so children can see goats up in the air and practice climbing just like they do.
Rare Breeds Porch Through rare breed goat and sheep exhibits, children will learn about rare breeds of animals and the Philadelphia Zoo’s conservation of these beautiful and endangered domestic animals.
The Barnyard Here, children can engage in animal care such as grooming and feeding.
Conservation Stations Three conservation stations featuring butterflies, budgies and fish, teach about water conservation, recycling and saving energy. Exhibits demonstrate the relationship between human behaviors and the result they have on animals in the wild. Guests will learn how reducing water and energy use and recycling impacts animals all across the world. Children will be encouraged in good environmental manners and be able to practice behaviors they can take home.
Tiny Tot Barn A farm-themed area designated for children up to age three will provide the Zoo’s youngest visitors and their caregivers with a soft and safe place to explore.
Activity Area A make-and-take activity station will allow children to build animal habitats for home, such as butterfly boxes, toad abodes, and bird strike prevention ornaments. A magnetic wall creates a storytelling zone for children using magnets with visual images and words.
super health health & fitness
SPILLING THE BEANS About Your Child & Caffeine
by Douglas Haddad, Ph.D.
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fter consuming two 24-ounce Monster energy drinks, a 14-yearold Maryland girl went into cardiac arrest while at home. Six days later, the teenager died at the hospital and the official cause of death was cardiac arrhythmia due to caffeine toxicity. These two large energy drinks contain the equivalent amount of caffeine found in fourteen 12-ounce cans of Coca Cola. The FDA regulates the amount of caffeine found in soda, but fails to regulate caffeine levels in energy drinks because they are not classified as “food products”, but rather as “dietary supplements.” Therefore, teenagers are unaware of how much caffeine they are consuming when it comes to these energy drinks because there are no regulations on disclosing that information on the labels.
Energy Drinks
Amount Amount of Caffeine
Amp Energy
8 oz.
71 mg
Red Bull Energy Drink
8.3 oz.
80 mg
Rockstar Energy Drink
8.4 oz.
83 mg
Monster Energy
8 oz.
92 mg
5-hour Energy
1.9 oz.
215 mg
The FDA doesn’t currently provide guidelines for caffeine consumption for kids. However, the Canadian government has recommended no more than 45 milligrams of caffeine a day for children between 4-6 years old. Other research indicates that teenagers should limit their
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daily caffeine intake to 100 milligrams. Children are typically bursting with energy, naturally, and to consume excessive levels of caffeine can impact mood and energy levels, thus disturbing their daily academic performance in
sugar and contributes to our global childhood obesity pandemic. Replace the soda with water, milk or 100% fruit juice. This will also help lower the chances of your child getting cavities or tooth decay.
“Caffeine is the gateway drug.”
- Eddie Vedder (American musician and songwriter)
the classroom. Exorbitant caffeine consumption poses serious problems and dangerous risks for a child. Like adults, children can experience the following side effects from consistent caffeine overload: X Increased heart rate, X Arrhythmia, X Increased blood pressure, X Becoming jittery, irritable, shaky or anxious, X Difficulty getting a good night’s sleep, X Becoming dehydrated, X Difficulty focusing on a task, X Increased acid release in the stomach causing heartburn. X Causes a physical dependence or addiction where the child can experience withdrawal symptoms when they suddenly cease using caffeine (e.g. dizziness, headaches, etc.) “Away from the caffeine” alternatives for your child: X Even though there isn’t any substantial evidence that demonstrates caffeine as a contributor to stunting the growth of children, consuming soda, caffeinated tea, coffee or energy drinks may result in a leaching of calcium which can lead to bone loss. The source of most caffeine for children comes from soda, which also contains a high amount of
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X Once in a while, treat your child with a cup of hot chocolate. The caffeine content in a 5 oz. cup of hot cocoa is between 1-8 mg as compared to a 12 oz. can of Coca Cola which has 64 mg. X When your child feels tired, encourage him/her to drink more water and/or get some rest, instead of chugging a caffeinated beverage. X Make physical activity a part of your child’s daily routine as exercise naturally increases your child’s energy levels. Like “Save Your Kids Now” fan page on Facebook. Be a part of this interactive community designed for both adults and children to discuss real issues pertaining to today’s youth, along with practical solutions for any of today’s unique challenges. For more information on helping a child obtain overall SUPER HEALTH, please visit: www. douglashaddad.com.w Douglas Haddad, Ph.D. (“Dr. Doug”) is a clinical nutritionist, full-time public school teacher in Connecticut 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.
HEALTHY Summer Traveling by Christina Bartlett, RD, LD
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t is important to take some time to plan ahead before you travel. This can be the deciding factor on how much you and your family will enjoy your summer vacation. As summer break approaches, make sure you have all of your travel plans in place before you start your adventure. Doing so ensures that the whole family will have fun and enjoy the vacation. Here are a few tips when it comes to picking healthy foods on the go.
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Pack a small cooler. This is a convenient way to incorporate meal and snack breaks without sacrificing too much money or travel time.
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Meal and Snack Ideas: 1) Cheese sticks 2) Tuna or chicken salad 3) Fruit salad 4) Cut up vegetables 5) Hummus 6) Peanut butter 7) Low-fat/Fat-free Yogurt 8) Whole grain crackers 9) Pretzels 10) Low fat/Fat Free popcorn 11) Sandwiches made with lean protein, whole grain bread, mustard and vegetables 12) Nuts 13) Water or other no/low calorie beverages 14) Homemade trail mix
4 If you are unable to pack a cooler,
be mindful of your food purchases. Yes, you are on vacation, but you don’t need to go overboard with the quantity of food consumed. 3 Try to fill half of your plate full of color. Aim to add more fruits and vegetables to meals and snacks. 3 Choose more lean protein. Trim visible fat and remove skin. 3 Limit fried foods. 3 Limit added fats, sugars and alcohol. These are empty calories!
The money you saved packing healthy meals and snacks will leave you with more money to spend on your vacation. Or, you can pocket the money for your next vacation. Make sure you pack all the things you will need. Don’t pack the day of departure. This will only increase your chance of forgetting something. Think about the activities you are going to do while you are away, and pack appropriately. Lastly, make sure the family, especially the children, know what to expect on the trip and have fun – enjoy your well-deserved break. http://www.eatcleandiet.com/food_and_recipes/clean_ recipe/healthy,_hearty_trail_mix.aspx#.UWw_oYJ1Hf0
Grab-and-Go Snacks: Homemade Trail Mix Recipes Kids Can Make http://blog.zisboombah.com/2012/07/11/grab-and-gosnacks-homemade-trail-mix-recipes-kids-can-make/
Christina Bartlett RD, LD is a Registered Dietitian and the owner of Everything In Moderation. Dedicated to providing nutrition information that is tailored to the individual. Visit: www.eimnutrition.com
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health & fitness fun fitness
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Summer Success Steps for Getting Active by Eric Chessen, M.S., YCS
T
he June edition of every parent-related magazine since the dawn of the printing press has excitedly, in bold-font and capital letters, informed readers that Summer is the time to get outside with your kids and HAVE FUN, ADVENTURE, EXPLORE, and MOVE. But, simply because the temperature hovers around 77 degrees for a week straight, with nary a cloud in sight, does not mean that children with developmental disabilities will automatically embrace the spirit of warm weather and rolling green meadows. For some of my athletes, the warmer weather has simply meant a more opportune climate for disrobing in public. The warmer weather does give us a variety of outdoor opportunities, and matching ability levels with novel activities can lead to fun...when done right.
Step 1: Choose your venue wisely Some of my athletes are not bothered by a park full of loud adults and children moving around, with stimuli abounding. Others are going to be thrown off and immediately seek the refuge of a quieter spot. It doesn’t matter how pretty a park is, or how many cool jungle gyms are settled among the trees and grass, if Tammy is not going within 50 yards of it. But, this park is really, really, really neat, and you know that if she just had a chance to explore a little bit without the distraction of toomany-other-people she might have a more-than-ok time. The place may be perfect, but when everyone and their brother is there, well. it may not be ideal. Can you try a morning venture, or a time when the place is less crowded? If it is a park,
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playground, or other outdoor spot, does it have areas that are more open or less used during certain times of day? You may need to perform a bit of reconnaissance here, but a good outcome is worthwhile.
Step 2: Time Factor It is the first above-60 degree and sunny day here in New York, and after walking for fifteen minutes around the meadow, my minimally verbal young adult athlete signals to me that he’s “finished,” presumably because he wants to go back inside and watch the same 3 videos on YouTube for a half hour. I know well the feeling of traveling to a well-researched, ideal destination only to have an individual lose interest in five minutes, or less. It’s one of the more charming attributes of the autism/DD population. We have to consider that our experience is not necessarily their experience. I would rather my athlete have a good 15 minutes than a good 15 minutes plus 2 barely tolerated minutes finished off with 1 half-hour meltdown. The math there does not equal fun. So maybe after 10 great minutes of activity or exploring, you head back to the car, or at least offer a preferred activity (if they must be on an iPad, at least they can be on it outdoors). A positive short experience provides the foundation for returning to and building upon that success.
Step 3: Skill Maintenance Yes it’s summer. Yes it is supposed to be fun. But keep up with those communication and language skills. The more an individual is able to express him/herself during a new activity, the more easily we can alleviate and prevent anxiety,
fun fitness health & fitness and solve any particular problem they may be having. Continuing to promote the use of acquired communication skills can also lead to using those language/communicative targets in new or novel environments. Having some key words, terms, and pictures for new places and activities can also build upon the lexicon.
nature of individuals on the spectrum, providing the opportunity to experience new places, particularly outdoors, can help in promoting independent exploration and “trying something new,” which may require a little prodding. I’ve found it beneficial and less anxiety-proving to start with “Let’s try this,”“Let’s walk this way,” or “Let’s climb up those rocks.” This circumvents the “Have to” trap. If we don’t know something exists, or we’ve never done it before, it is difficult to accurately say whether or not we enjoy it. When it comes to the ASD/DD population, consider the fact that they often find new activities aversive, so start off simple with few demands. Trying to provide too many new experiences in one day can be overwhelming. I like to go for small victories that can be built upon over time. This is the process by which things actually get fun, and done.
Step 6: Social Experiments Step 4: Family Fitness It is just about impossible to promote a fit, active lifestyle for your children if you are not leading one yourself. Just getting outside and moving around is a start. I work with families around the country who want to start creating fitness and movement programs in the home. I make sure they know that these activities are, not only, suitable in the home, but also, outdoors as well. With a few sand bells, a medicine ball, and a big rope, the entire family can get moving and active throughout the day. Everyone in the family is going to have different abilities starting a program, but exercise activities that can be easily regressed (made simpler) and progressed (more challenging), provide benefits for everyone involved.
Step 5: Allow and Encourage Exploration Despite the often rigid and routine-driven
Photo courtesy ©familymwr /flickr.com
Socialization is an ever-present issue with ASD/DD; outdoor activities with a small group can provide some excellent socialization opportunities. Interaction, particularly among individuals who are lower functioning from Adaptive and Cognitive perspectives (as I outline in the PAC Profile), may need some extra support to socialize and communicate with peers, but, as with other educational and vocational goals, exercise and active play settings provide new and appropriate situations where social skills can be developed. I hope these six steps have promoted some thoughts and perhaps even motivation on your side. Remember that the first rule is “You can’t force fun,” but providing new places, people, and activities along with good instruction, reinforcement, and behavior support, serve as building blocks to a healthier, happier life. Eric Chessen, M.S., YCS Eric Chessen, M.S. is the creator of the PAC Profile Assessment Toolbox (www.PACProfile.com), PAC Profile Workshop series, and consults with special needs programs around the world. Available on www.Autismfitness.com
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fun&functional Kiersta Archer, 3, listening to the sounds of the waves. Cochlear Implants give the gift of sound.
learning activities power of play social skills
~ Image courtesy Alex DeMolina
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GOT POOL GAMES? When the sun is hot, water is the place to be. Kids in water are a natural. Water is also a medium that is perfect for experimenting with basic motor and social skills by putting a new twist on the use of inexpensive swim equipment: the foam noodle and the child size inner tube. By Barbara Sher
NOODLE GAMES RIDING THE HORSE NOODLES Riding a noodle is like riding a horse except ten billion times easier. It helps kids work on their sense of balance while having the fun of pretending. Place a noodle between the child’s legs so that he is sitting in the middle of the noodle and holding on to the top half with both hands. An adult can sit on the same noodle and ride together or have a separate “horse”. Explain or show your rider how to make the Noodle Horse go by paddling their feet so they move forward in the water. If you pretend to be racing each other, don’t forget the requisite yells of “Giddy up” and “Yippee!”
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LONDON BRIDGE The bridge is made from two noodles. Two people hold the ends of both noodles to form a bridge between them. Start with the noodles arched to form a high bridge. Sing the traditional London Bridge song (with a change at the end from “ladies” to “children”) LONDON BRIDGE IS FALLING DOWN FALLING DOWN FALLING DOWN LONDON BRIDGE IS FALLING DOWN MY FAIR CHILDREN (INSTEAD OF MY FAIR LADIES) TAKE THE KEY AND LOCK THEM UP LOCK THEM UP TAKE THE KEY AND LOCK THEM UP MY FAIR CHILDREN On the verse that starts with “Take the key”, catch one or more children between the two noodles and move them back and forth until the end of the verse. You can modify the movement to fit the age, temperament and skill level of the child. Move the noodles quickly from side to side
if your kids want that excitement or melodically slow for others who prefer the easy ride. You can add the variation of catching more than one child at a time and sometimes catch all the children at the same time! Later, if you want to add the challenge of kids swimming under water, lower the bridge from its arch to being parallel to the water. Change the words of the song to: LONDON BRIDGE IS WAY WAY DOWN WAY WAY DOWN WAY WAY DOWN ETC.
INNER TUBE GAMES BALL IN THE HOLE An inner tube floating in the water is the target. The size of the ball they throw depends on the child. A tennis, or, plastic ball works; a beach ball works well especially if it has some water inside it to keep it from floating away. The water adds a bit of a spin to the ball. If the kids are in a circle around the ball, they can take turns and cheer each other on. If needed, the tube can also be brought closer to increase success. You can add variation to this game by putting a floating object such as sponge or rubber ducky in the middle of the circle that children have to dunk by hitting it with the ball.
THROWING THROUGH THE TUBE Hold the tube vertically and have children throw a ball, or any small water toy, through to the other side. Throwing through a tube helps kids’ eye-hand coordination by giving them a narrower focus on where to throw and thereby making it easier to hit one’s mark. . Children new at throwing will often throw the ball every
which way. The hole in the tube gives them a defined direction. Another child, who’s good at catching, can be on the other side of the tube to catch the objects.
WHERE DID THEY GO? Stack three tubes up and have the kids throw balls and/or water toys (the more, the better) into the tube while they sing to the tune of “London Bridge” Throw the balls into the tube, into the tubes, into the tubes Throw the ball into the tubes, where did the balls go? Then lift up the top tube and say, “are they here”? Nooooo Then, lift the second tube and say . “Are they here?” Nooooo Then, lift the last tube and all the toys and balls are gloriously floating there and you say, “They’re here!” Now, this game won’t fool anyone. Kids figure it out right away, but if your experience is like mine, they will still want to play it again and again. Barbara Sher M.A.,O.T.R, an occupational therapist and author of nine books on childrens games. Titles include EARLY INTERVENTION GAMES SPIRIT GAMES and EXTRAORDINARY PLAY WITH ORDINARY THINGS. Send request for workshops to barbara.sher@gmail.com or www.gameslady.com images © popofatticus /flickr.com
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“Foodie” Fun for Kids: Dry Rub Ribs Encouraging Speech & Creating Yum!
by Sarah Choueiry Speech Foodie
Ingredients
makes 1 Rack of Ribs For Rub: 1/4 teaspoon cayenne pepper 1 teaspoon ground cumin 2 teaspoons paprika
History
So, I got this recipe, years back, while watching the food network. Unfortunately, I don’t know the chef that created it, but throughout the years I have tweaked it and it is easy and amazing.
1 teaspoon dry oregano 2 teaspoons brown sugar 1/2 teaspoon ground black pepper 1 teaspoon salt 3 tablespoons of veg oil
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create, cook, Talk!
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Instructions
Preheat the oven to 300 degrees.
Parent: Remove the membrane
from the bone side of the rib (you can also have the butcher do this when you purchase it).
l” a n o i t c n u F & n u “F recipes y s a e , y h lt a e
us h Share with your kids. h it w e k a that you m on our See them in
s d i K r o f n u F ” e “ Foodi
Kiddo:
Measure out each spice and mix all the spices together in a small bowl.
Kiddo: Rub the dry rub mixture all over the rib.
Kiddo:
Add the veggie oil on top of the rib and rub it in. Your fingers will turn red from the cayenne.
Kiddo: Place the rib on a cooking sheet.
Parent: Place in the oven. Let it cook
for 2.5 hours. Remove and let it sit for a minute.
Language Time:
Receptive Language: Following written direction. This is a great recipe for the older kiddos to work on in order to follow written directions requiring measurements. Have the tools ready for them to measure each of the spices and have the spices lined up. Let them find the spice and measure each one into the bowl. If your kiddo is younger, you can prepare the correct measuring spoon and point to the seasoning you need to measure. Direct them to then place it in the bowl and continue with the next one. Expressive Language: You can have them read to you what spices are needed and the measurements needed to make the dry rub. Let them tell you each step, and walk you through making the recipe.w
Sarah Choueiry’s , provides parents with healthy, nutritious and easy recipes that help improve their child’s language skills, imagination and confidence. Speech Foodie gives ALL children the chance to be creative while bonding with their family. www.speechfoodie.com
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fun & functional learning to sign
ASK Angie ASL - Deaf Awareness month! by Angie Craft
“I”
VIDEO DEMONSTRATION: May is Deaf Awareness month!
Pledge
Let’s show our disability awareness by learning the Pledge of Allegiance in sign language! Now, when you are at a baseball game, or at the parade on Memorial Day, you can honor our country by signing the Pledge of Allegiance.
Tip for working with the deaf
Allegiance 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
TIP: Summer is hot and being outdoors or playing sports gets us sweating. Perspiration can cause damage to hearing aids. Simple fixes like a “dry kit” can fix that problem.
Enjoy and have a safe and wonderful summer. w
note
ASL is a multi-sensory form of communication that helps children acquire vocabulary more quickly and efficiently.
For more information: follow us on FaceBook @ HandCraftEdASL
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proud moments®
Sharing “I CAN!”attitudes Proud Momma Moment My name is Angela Ramirez, and my daughter, Giovanni “Gigi” Ramirez, made last year’s (2012) Mother’s Day a very proud day. I had gone to visit her the Friday before Mother’s Day and her teacher said, “I want to show you something...” She sat me down at one of the tables in class and said to Gigi “Go bring your book Gigi, and sit here with Momma”. Gio did what was asked of her; she got her book and came to sit next to me at the table. Mrs. Burton opened her book and said “Ok Gigi, let’s read for Momma”... Words can not express the feeling of pride I had in my heart as I listened to my babygirl read an entire book to me by herself, and then point the main characters and tell me who they were and what the story was about.Tears streamed down my face as I beamed with pride. I came home and called the people closest to me and cried each time I told them.”She read to me, for the very first time, she read to me” .
Giovanni “Gigi” exhibiting an “I CAN” attitude
Gigi is 10 years old, and was born with a heart defect. She also has CP, and began having seizures when she was 7 months old which led to her intellectual disability. She is progressing so well in school, and every time we set goals for her, she never ceases to make me proud by achieving them. I will never forget the feeling, and I know it’s only going to be the beginning of Proud Momma Moments. w
Photo courteousy Angela Ramirez
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.
You may feel you can only share your excitement or enthusiasm with someone that will really understand. We understand. submit@parentingspecialneeds.org
~ Angela Ramirez (Proud Mom)
Water Fun! My most recent proudest moment was when my son, Matias (30 months old and has CP and sensory processing disorder), was able to walk into the pool and enjoy getting wet!!w ~ Katherine Buitron (Proud Mom)
enjoy your life!
Matias exhibiting an “I CAN” attitude Photo courteousy Katherine Buitron MAY/JUN 2013
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Thumbs Up
TO ALL OUR PARTNERS, HELPING US TO UNITE THE SPECIAL NEEDS COMMUNITY To inquire about becoming a PSN Partner for PSN Parents, email: info@parentingspecialneeds.org