L I F E S K I L L S • I N F O R M AT I O N • I N S P I R AT I O N
Developing
Self-Advocacy Skills
Part IV of Part IV
PERSONVENTURED
ACHIEVING The Best Possible Future
Entrepreneurship Series
Tried and True Tips
Finding Professional Live-In Care
Professional Au Pair Helps Family Care for Child with Special Needs )DPLO\ EHQHĆŹWV IURP DX SDLUoV EDFNJURXQG DV RFFXSDWLRQDO WKHUDSLVW
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Kai is a happy four-year-old boy who likes to run, climb, and investigate everything. But, when he ZDV DERXW ĆŹYH PRQWKV ROG KLV SDUHQWV UHDOL]HG KH ZDV KDYLQJ LQIDQWLOH VSDVPV D W\SH RI VHL]XUH
“By the time we’d been to the pediatrician, the neurologist, done an MRI and everything else you can WKLQN RI WR ĆŹQG RXW WKH XQGHUO\LQJ FDXVH ZH JRW D GLDJQRVLV RI WXEHURXV VFOHURVLV q said Claudia, Kai’s mother. Claudia and her husband Anthony wanted a childcare provider who could help Kai with the developmental delays that resulted from his condition. They also needed care for Kai’s older sister, Sophia, who is six years old. Both parents work full time and Claudia travels once or twice a month IRU EXVLQHVV VR ĆŽH[LELOLW\ ZDV LPSRUWDQW 7KH\ UHalized they needed a caregiver with professional training and experience. Lydia, a 22-year-old occupational therapist from Germany had worked with children with special QHHGV DQG UHFHQWO\ ĆŹQLVKHG KHU WUDLQLQJ /\GLD and the family were introduced through PROaupair, which specializes in professional au SDLUV ZLWK H[SHULHQFH LQ ĆŹHOGV OLNH SHGLDWULF QXUVing, pre-school teaching, occupational therapy or special education. It was a perfect match.
p:H WU\ WR FRPELQH WKLQJV OLNH FRQFHQWUDWLRQ DQG FURVV PRWRU VNLOOV VR KH LV GRLQJ VRPHWKLQJ KH OLNHV EXW VWLOO KDV D WDVN ZKHUH KH QHHGV WR IRFXV q Lydia explains.
How are PROaupair au pairs unique? Experience caring for children with special needs including those with epilepsy, autism, ADD, ADHD, Down syndrome, Asperger’s syndrome, and more 7UDLQHG DQG GHJUHHG LQ ƏHOGV VXFK as occupational and physical therapy, special needs education and pediatric nursing
p/\GLD KDV WKH URXWLQH GRZQ q &ODXGLD VD\V p6KH NQRZV ZKDW ZRUNV ZLWK .DL 6KHoV FRPSOHWHO\ PDVWHUHG WKDW $QG DW WKH VDPH WLPH /\GLD LV YHU\ JRRG DW NHHSLQJ 6RSKLD EXV\ ZLWK PDNLQJ DUWV DQG FUDIWV SURMHFWV q Lydia works up to 45 hours per week, playing with the kids, cooking their meals, reading stories, and helping them to keep their rooms clean. She helps the family juggle everything from doctor’s appointments for Kai to the occasional date night for mom and dad.
The only U.S. Department of State designated au pair agency with a professional focus.
p,Q RXU H\HV LWoV EHHQ WKH EHVW WKLQJ q says Claudia. “1RW MXVW RQ D SHUVRQDO OHYHO EXW ZH DOVR VHH WKDW .DL NHHSV PDNLQJ SURJUHVV :KHQ , ORRN DW DOO RI WKH IDPLOLHV WKDW ZH NQRZ WKDW KDYH NLGV ZLWK VSHFLDO QHHGV , ZLVK HDFK DQG HYHU\ RQH RI WKHP FRXOG KDYH D SURIHVVLRQDO DX SDLU q
How much does it cost? Approximately $12 an hour for one or more children Flexible schedule, set by the family, for 45 hours a week of childcare To view candidates and for more information contact us:
Lydia starts work at 6:30 a.m. and helps to get the children dressed and ready for school, including preparing their lunches. Since Kai doesn’t go to school until 11 a.m., Lydia spends time working with him on his therapy homework. These take the form of games and exercises that help him with attention span and coordination and reinforces what he learns during his therapy sessions.
www.proaupair.com 844-787-6566
inside this issue... july aug 2015 Features 21
21
26
Real Moms Share Molly Dellinger-Wray shares about Overcoming Obstacles and Meeting Milestones
Developing Self Advocacy Skills: 4 Ways You’re Already Doing It and 4 New Things You Can Try
Handling Your Child’s 30 Diagnosis: Six Things Parents Should Do For Themselves
40
30 11
Achieving the Best Possible Future: Tried and True Tips
psn community news
8
Noteworthy! Americans with Disabilities Act turns 25 Downs Designs Dreams Launches “Adopt-A-Jean™ Friday” Morgan’s Wonderland Seeking To Honor Outstanding Benefactors
check it out!
Products & Products 10 New You Can Use & Win!
12
52
real life
Ask the
PROFESSION PROFESSIONAL AL
Three Creative Ideas 14 Top To keep writing skills sharp during the summer
TRUTHS about being a special 16 needs/medically complex parent Puberty Help! 18 Books to assist parents, carers, COVER: Cecilia Rabe Image Courtesy: Alicia Kae
boys and girls on their journey through puberty. JUL/AUG 2015
PARENTING SPECIAL NEEDS.ORG
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inside this issue... july aug 2015 your life
42
Time Outs 28 Mommy The Great Smokey Mountains, N.C. Workout for Mom 34 Playground Circuit Train with these 5 exercises Moments 54 Proud Patricia exhibits a CAN & WILL Do attitude
in focus
42 Person-Ventured Entrepreneurship: Part IV of a IV part series
34
E = Everyone Should be Educated on Entrepreneurship
health & fitness Fun 36 Fitness MotorVation! Ensuring Fitness as a Life Skill
Special Diets
38 Off to College!
38 50
Food Allergies and Special Diets
fun & functional
48 in every issue 6 psn contributors 7 from the heart 9 contest/giveaways
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Appening? 48 What’s Technology for Life Meet Nathan of Play 50 Power Shoe Mountain + Tips 51 ASL Start Preparing Now for Back to School
with Kids: 52 Cooking Kefir Lemon Pound Cake
Autism Resources at Your Fingertips! The Autism Community Hub is the best source for resources on Autism Spectrum Disorders (ASD) for individuals and the general community.
AUTISM AWARENESS COMMUNITY HUB
Presented by Children’s Specialized Hospital and Kohl’s Autism Awareness, The Community Hub is the only comprehensive source providing reliable information on Autism in your community. Together, we can build stronger, more inclusive communities. Take an adventure through The Community Hub now! VISIT:
www.childrens-specialized.org/ KohlsAutismAwareness
This community service is made possible by the Kohl’s Autism Awareness program at Children’s Specialized Hospital
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 Meme Hieneman
Barbara Sher
Eric Chessen
Barrie Silberberg
Ph.D. in Special Education
Pediatric Occupational Therapist & Author
M.S., YCS, Exercise Physiologist
Author
info@parentingspecialneeds.org GRAPHIC DESIGNER
Michael Leisttein info@parentingspecialneeds.org ADVERTISING SALES
Chantai/Judy Jaszcz Corporate Sponsors & Ad Sales Manager sales@parentingspecialneeds.org
Curt Mellott Tracy Felix
Douglas Haddad
Christina Bartlett
Jim Hasse,
Xlinked1 Special Needs blogger
Ph.D. (“Dr. Doug”) Author, Full-time Contributing Writer
Registered Dietitian
Founder of cerebral-palsy-careerbuilders.com
MidWest & Lower Eastern curt@parentingspecialneeds.org
Advertising Sales Person Needed inquire at Sales@parentingspecialneeds.org SOCIAL MEDIA SPECIALIST
Shannon Colon Shannon@parentingspecialneeds.org WEBMASTER
Sean Thompson sean@parentingspecialneeds.org
Cynthia Falardeau Executive Director of the Education Foundation of IRC
Cristen Reat Co-Founder Bridging Apps.org
Ernst VanBergeijk
Ahren Hoffman
Ph.D., M.S.W. NYIT/VIP
(CTRS), Manager of Industry Relations & Partnerships at the National Lekotek Centerr
Angie Craft
Becca Eisenberg
Amanda Morin
Deaf Education Specialist; Spec. Ed. Teacher
Speech Language Pathologist
Education Writer, Special Education Advocate & Author
“Share your knowledge. It’s a way to achieve immortality. ~Dalai Lama
Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www. parentingspecialneeds.org Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reflect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2015 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PUBLISHED BY: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968
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4EL s &AX
www.parentingspecialneeds.org
editorial director from the heart
Summer Heat!
5 THINGS I LEARNED FROM THIS ISSUE
1. Fun ways to get a workout in while at the playground (p.34). 2. Sometimes you have to look beyond the title for some really great resources (p.28). 3. Our Real Mom this issue shares a wealth of knowledge twice this issue: p.21 and again ON P 4. Things parents should do for Themselves, after a child’s diagnosis. I am still trying to incorporate many of these 6 things in my life and my daughter is 18. P
A few days ago I went to get into my car. A seemingly, simple thing to do, right? It was a typical, mid-afternoon Summer, but as I opened the door, the “wave� of heat that poured out of the car caught me off guard for a second...and I live in Florida, no less! So, after I opened every door to let AS MUCH EXTRA HEAT OUT ) GOT IN AND hMAXED OUTv THE ! # !S ) sat there, my reality check hit me: easy for me to do this; not so easy for so many others. How many things do we all take for granted....every single day? Little things? Simple things? I was lucky that day.....it was only me. I didn’t have to help anyone into the car; didn’t have to deal with a wheel chair, FOR EXAMPLE DIDN T HAVE TO RUSH TO BE ANYWHERE 4HAT ISN T always the case for each of us. That day, the biggest hurdle to my ability to be independent was a little heat that I had to deal with. The heat went away quickly and I almost forgot about it entirely until I started to put this issue together. One of the key themes of this issue is teaching life skills for INDEPENDENCE 7E ALL WANT OUR SPECIAL LOVED ONE S TO BE AS prepared as they can be for a life that is full of wonderful possibilities.....even if there is a little “heat�in the process. All the best,
Celebrate Triumphs!
Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org
5. How apps are being used to help Nathan reach his educational needs (p.48). Next Issue: School Solutions JUL/AUG 2015
PARENTING SPECIAL NEEDS.ORG
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psn community news
Sharing
updates
Morgan’s Wonderland Seeking To Honor AMERICANS WITH DISABILITIES Outstanding ACT TURNS 25 Benefactors August 1, The signing of the Americans with Disabilities Act (ADA) on July 26, 1990 was a pivotal moment in the history of Americans with
Nomination disabilities. This landmark legislation granted people with disabilities deadline the same civil rights enjoyed by other citizens in all areas of public life. The ADA addresses the rights of people with disabilities in five key areas: employment, state and local government facilities and services, public accommodations (stores, restaurants and movie theaters etc…), telecommunications and transportation. Visit timeline: www.dol.gov/featured/ada/#24
Saturday, Aug. 1, has been set as the deadline for nominations for the 2015 Morgan’s Wonderland Walk of Fame. Each year, Morgan’s Wonderland shines the spotlight on five heroes who’ve been going above and beyond to befriend the special-needs community. These extraordinary individuals clearly exhibit qualities such as caring, determination, sacrifice and, above all, inclusion. The five Walk of Fame honorees will be recognized at the Free to Soar Gala on Saturday evening, Sept. 19, 2015. Visit: www.forbrain.com
Downs Designs Dreams Launches “Adopt-A-Jean™ Friday” Downs Designs Dreams will donate a pair of Downs Designs® Jeans or NBZ® Jeans through this unique campaign. The company promotes independence and instills confidence by designing, developing and marketing a special clothing line for special people in order to meet the needs of individuals with disabilities. These jeans feature an elastic waist, no button or zipper and soft, stretchy denim for extra comfort and independent dressing. Find out more: www.downsdesignsdreams.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.
Want I t ? W in Look for this symbol on pages then enter to WIN at PSN Contests
it!
Cecilia Rabe, 7, enjoying Easy Daysies Every Day Starter Kit from Ableplay
Key to the Front Door from Ableplay
Bears for Humanity from Ableplay
Bluebee Pals
the sunshine. Her mother, Alicia Kae, of Topeka, Kansas, shared this adorable picture with us. Cecelia has been diagnosed with DiGeorge Syndrome, hypo-plastic left heart syndrome (three open heart surgeries) and has severe food allergies. While mostly nonverbal, she is now learning to speak and has made amazing progress over the past year. Clearly, she loves swimming, but also loves coloring and she draws the best pictures!
from Ableplay
Stayy in touch in order to W in! Like us on
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Cover Image Courtesy: Alicia Kae
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JUL/AUG 2015
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Covering all the Ages & Stages
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special products check it out!
NEW Products TEENY DRONES LAUNCHES RELIABLE TOY DRONE
NEW SWIVEL SEAT IMPROVES CAR SAFETY FOR PEOPLE WITH DISABILITIES Teeny drones are toy mini quad-copters weighing close to nothing, at 13.7 grams. Size doesn’t matter, at least when it comes to these drones. Teeny Drones have an incredible ability to fly outdoors, and even in high winds they can go up to 80 feet in the air. Practically indestructible and incredibly fun to master, Teeny Drones prove to be a great investment for young and old drone enthusiasts. www.teenydrones.com
The first of two new swivel seats from Autoadapt to hit the market this year, Turny Evo helps both drivers and passengers to get seated. A swivel seat is not a seat but a device under the seat that enables the seat to be rotated towards the door opening. This facilitates getting in and out of the seat. www.autoadapt.com
SURROUND TOOTHBRUSH Three rows of bristles surround the teeth to clean front, back and biting surfaces all at the same time. This means that more tooth surface can be cleaned in the time that a caregiver is allotted, especially when the degree of cooperation is limited. The soft, end-rounded bristles and smooth, heart-shaped, compact head make brushing safe and comfortable. The brush head and neck have been re-designed to make brushing safer. www.specialized care.com
JUL/AUG 2015
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check it out! special products
Some of these Special Products are available for Parenting Special Needs’ Contest Winners. To enter, click on CONTESTS on our site and register.
Products you can use and WIN!
Fun Along the Way to Adulthood
W
hether a child puts on a white coat to give her doll a wellness check or uses an old briefcase to hold all his “important” coloring books, being a grown up looks mighty fun to little ones. Pretend play teaches kids beginning life skills and feeds their imagination.
W in it!
According to the American Psychological Association, parents/caregivers are essential to the life of a child. They give them health, safety, skills and the tools needed to succeed in life. Pretend play teaches children these essential life skills by mimicking grownups while making believe. Here are a few products that do the job: Bears for Humanity teach kids all about giving to others. Parents can explain that every purchase results in another teddy bear being given to a child in need. In addition to this education in empathy, stuffed animals are an excellent tool for language development and building confidence.
Helpful Books for Parents of Children The Secret Rules of Social Networking T by Barbara Klipper & Rhonda Shapiro-Rieser b
B outlining the unstated rules that guide positive By relationships r overall, this book then demonstrates how one can c carry these relationships into an online environment. The T authors address Internet safety, romantic relationships, online o vs. in-person interactions and more, with a particular p focus on adolescents and young adults with communication and social skills challenges. c
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The Family Hope Center presents
How to Help Your Child with Special Needs
W in it! It’s sometimes hard for kids to comprehend the responsibilities of adult life. Deb Avara Books has created a board game that does just that. Key to the Front Door teaches life lessons ranging from money skills to going to work through game play. Tasks and to-do lists are parental tools. Now kids can tackle daily tasks using the Easy Daysies Every Day Starter Kit. This magnetic scheduler helps kids plan and conquer everything from family events to afterschool activities. Bluebee Pals teach kids the importance of keeping in touch with friends and family along with forming healthy habits like reading before bed which builds vocabulary and language skills. Teaching life skills helps kids make good decisions so make sure the lessons of life are fun along the way! Y For more play ideas and toys for children with special needs go to www.ableplay.org. This website was created by the National Lekotek Center to encourage children of all abilities to experience the benefits of play. Find us on Facebook. Reviewed by Ahren Hoffman, Manager of Industry Relations &Partnerships, National Lekotek Center; ahoffman@lekotek.org
with Special Needs P Paleo Takeout: Restaurant Favorites Without the Junk W by Russ Crandall b
I Paleo Takeout, Russ Crandall re-creates everyone’s In ffavorite takeout meals. By using wholesome ingredients aand some seriously inventive techniques, this gives yyou the opportunity to revisit your favorite restaurant cclassics, with all of the gratification and none of the rregret! And he teaches you how to build a full-course meal in less than an hour. m
“I can see my son doing things I never dreamed of. Thank you!” If your child has been given the diagnosis of: Autism ADD/ADHD Cerebral Palsy Epilepsy Developmental Delay Down Syndrome Vinnicius and Tatiana P., Connecticut Dyslexia or other neurodevelopmental concerns,
FHC is here to help. The Family Hope Center Team has trained thousands of parents from around the world to understand the root causes of their child’s QHXURORJLFDO FKDOOHQJHV DQG KRZ WR VLJQLÀFDQWO\ improve their child. This interactive, integrative and practical 3-day Parent Training Conference will teach you how the EUDLQ LV UHDOO\ ¶ZLUHG· DQG ZLOO JLYH \RX VLJQLÀFDQW tools and an organized approach to help your child progress.
2 Minutes with Click HERE to watch.
Learn more about this unique and proactive approach at an upcoming Parent Training Program “How to Help Your Child with Special Needs” Call (610) 397-1737 for location and registration information or visit:
FamilyHopeCenter.com
by Douglas Haddad, Ph.D.
uring the summer, many kids fall into the “summer slide” and keeping academic skills sharp takes a back seat to playing outside, going on vacation, and hanging out with friends and family. However, summer is a great time to explore creative writing opportunities and stimulate the mind, whether you are in the backyard or at the beach. There are many ways to keep kids interested in writing and sharpen their skills through the summer months.
D
2. Create a Journal
1. Start a Family Book Club
3. Create a Poem
Compile a list of books that appeals to all family members and have the kids choose one that they would like to read. While reading through the book, each family member can draw a picture of a character and write a brief description of him/her. Another idea to encourage writing during the summer is to write a book together as a family. Decide on a theme that everyone would like to write about and use your imagination to work together on creating a masterpiece. Indirectly, you can discuss the elements of a good story with a child. These include the setting, characters, plot (which includes the conflict), point of view, and theme.
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Being outdoors opens up an array of possibilities for a child to record observations about his/her surroundings. Help a child make a daily journal and show him/her how to make qualitative observations using the senses, as well as quantitative observations - which are made with instruments such as rulers, thermometers, and balances. Some ideas for observations that kids can write about include examining plants, beach, bodies of water, insects, flowers, trees, birds, and rocks.
Writing a poem or song is great way to develop a child’s imagination and visualization skills. It allows kids to express themselves about something that has meaning in their lives in a creative way. It also enhances their use of different vocabulary. There are many different types of poems, each with a different format and rhyming scheme. One way of encouraging a child to write a poem is by providing him/ her with a defined structure.
Different kinds of poetry s Haiku - are comprised of three non-rhyming lines where the first and third lines have five syllables each
advice real life and the second line has seven syllables. s Limerick – a humorous poem comprised of five lines. The first, second, and fifth lines have seven to ten syllables while rhyming and have the same verbal rhythm. The third and fourth lines have five to seven syllables while rhyming and have the same verbal rhythm. s Acrostic Poem – the first letter of each line of the poem spells out a word which summarizes the meaning of the poem. For example, the first line of a poem about “Beach” would start with “B”, the second line with “E” and so on and so forth. s Ballad – a narrative poem that retells an event in history, in the news, or in your life. It is composed in short stanzas, typically rhymes, and is often adapted for singing. s Free Verse – a type of poem that does not require any rhyme scheme or meter.
If a child struggles with an idea, you can suggest some prompts: s s s
h) LOVE SUMMER BECAUSExv h4ODAY IS A GREAT DAY BECAUSExv h4HE DAY IS PERFECT BECAUSExv
Another way of helping a child get started on writing a poem is to have - Terry Pratchett (novelist) him/her describe the theme of the poem using each of the five senses. Let’s say the topic is about the beach. What does the beach look like, feel like, smell like, sound like, and taste like? Piquing the senses is sometimes all a child needs to create a masterpiece and keep their skills sharp just in time for the start of the school year.Y
“Writing is the most fun you can have by yourself.”
Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids…Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields. www.douglashaddad.com
about being a special needs/ medically complex parent byy Tracy Felix b
A
s a special needs parent you find yourself in situations that most of your friends and family won’t even know about. You will think about different things and life may be more complicated for your family. Although life can be hard sometimes, it is good to take time to laugh and have fun. Laugh at yourself. Laugh at others. Even, laugh at your situation. Here are some thoughts about our situation, and our laughable moments.
You will… s BE FORCED TO BECOME ORGANIZEDxOR GET BURIED IN paperwork and doctor’s orders. s THINK ABOUT DEATH MORExAND CHERISH EVERY DAY because of it. s BE FORCED TO GET CREATIVE IN ORDER TO MAKE YOUR CHILD MORE MOBILE OR TO MAKE LIFE EASIERxOR YOU WILL SPEND A LOT of hours on Google or Pinterest to find what you need. s FEEL LIKE IF YOU TOOK A TEST TO BECOME A DOCTOR YOU WOULD PROBABLY PASSxWITHOUT HAVING TO SPEND ALL THAT time and money on school.
s HAVE A NEW version of extended family that will now include CNA’s, Nurses, Doctors, and Therapists that you see more than YOUR ACTUAL FAMILYxAND you will want to take them everywhere WITH YOUxEVEN IF that means buying a second tent (or bigger camper) for them so you can take that camping trip. s HAVE MORE THINGS TO WORRY ABOUT COMPARED TO MOST parents. 4HERE IS A FAMOUS SAYING hLIVE IN THE MOMENTvxYOU will have mastered that so well that now you can’t plan a lunch date with a friend for tomorrow. When cold and flu season are in full swing, you may be tempted to invent a bubble to put around your child SO THEY DON T GET SICKx 'OOGLE AND 0INTEREST WILL NOT BE able to help with this (If you come up with something, PLEASE tell me!).
s 'OGGLE AND 0INTEREST WILL ALSO COME IN HANDY WHEN YOU are trying to make the perfect Halloween costume that includes a chair s 9OU WILL NEVER HAVE A DOOR CAR AGAIN s ! GREAT STRESS RELIEVER IS HAVING SOMEONE ELSE FOLD DOWN THE CHAIR SO IT lTS IN A VEHICLEx IT IS SIDE SPLITTING FUNNY to watch
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Image courtesy Tracy Felix
If you have a child in a wheelchair you will have some added laughable moments.
advice real life s 'ET USED TO BEING STARED ATx GIVE THEM SOMETHING to stare at and wear it proudly
There will be EVEN MORE laughable moments if your child eats with a gastric tube. s 9OUR CHILD IS HEALTHY because of the tube s 3OMEONE at some time, will pull it out. This will not be pleasant for anyone, but you will get through ITx AND probably do it again
s !T SOME POINT YOUR CEILING OR FACE WILL BE COVERED IN something that you were trying to push into the tube. s 9OU WILL BECOME THE EXPERT ON HOW A PUMP RUNS THE alarms that it makes, and will have to teach others how TO USE ITx INCLUDING HOSPITAL STAFF
Please take time EVERY DAY to laugh about something, then share those moments with me. I would love to hear your “laughable moments�.Y
Tracy Felix Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her at www.xlinked1.blogspot.com and www. facebook.com/xlinked1
8-31-15
real life bookshelf essentials
Puberty Help! The word alone strikes a little fear in all parents. With the help of parents and professionals, we have put together some great books to assist parents, carers, boys and girls on their journey through puberty.
Simple and to the point THE CARE AND KEEPING OF YOU 2: THE BODY BOOK FOR OLDER GIRLS by Cara Natterson
This book will guide you through the next steps of growing up and covers new questions about periods, your growing body, peer pressure, personal care, and more!
THE CARE AND KEEPING OF YOU: THE BODY BOOK FOR YOUNGER GIRLS by Valorie Schaefer
This best-selling body book for girls features tips, how-tos, and facts from the experts. Topics range from hair care to healthy eating, bad breath to bras, periods to pimples, and everything in between.
Contains graphic illustrations
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The Boys’ Guide to Growing Up by Terri Couwenhoven
This revised edition addresses the difficult task of child discipline with humor, keen insight, and proven experience. The technique offers a foolproof method of disciplining children ages two through 12 without arguing, yelling, or spanking. By means of three easyto-follow steps, parents learn to manage troublesome behavior, encourage good behavior, and strengthen the parent-child relationship. Ten strategies for building a child’s self-esteem and the six types of testing and manipulation a parent can expect from the child are discussed.
great visuals
Teaching Children with Down Syndrome About Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals
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by Terri Couwenhoven
Special Boys’ Business™ by Heather Anderson, Fay Angelo and Rose Stewart
As a sexual educator and mother of a child with Down syndrome, author Terri Couwenhoven blends factual information and practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak comfortably about sometimes difficult subjects, and explains why it’s so important to begin early when dealing with issues such as hygiene, emotional and physical boundaries, privacy, and what makes for healthy relationships
This book is a puberty resource written for boys with special needs, including: Intellectual disability, Physical disability, Communication disorder and Autism. Special Boys’ Business™ beneficial takes a boy, his parents to all and caregivers through the changes experienced at puberty. Information is presented in simple text with clear colorful pictures. It is an appealing disability puberty book with fun, entertaining illustrations. This puberty book provides practical hints for parents, teachers and caregivers.
What’s Happening to Ellie?
31
BACK to SCHOOL T ps for a successful school year
by Kate E. Reynolds
This simple picture book follows Ellie as she begins puberty. Designed to be read with girls with autism or other special needs, it provides the perfect starting point for parents and caregivers to discuss changes including new hair growth and menstruation. . It covers all the changes that they will experience, both emotional and physical.
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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.
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Molly Dellinger-Wr y Life’s lessons
Overcoming Obstacles and Meeting Milestones
M
olly Dellinger-Wray is a mother to her son, Patrick, who has autism. Molly shares her story of overcoming obstacles and meeting milestones on the way to Patrick’s graduation. She partnered with one of our contributors, Meme Hieneman, and together they have submitted a wonderful, informative perspective for you to read. Learn what she has to say... Photos Courtesy Molly Dellinger-Wray
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The end of a long journey Like thousands of other mothers, I planned to watch my son earn a college diploma this month. I was eager to sit in the audience like a member of every other family, eager to capture a photo of him in a cap and gown. For me, it would mark the end of a very long journey. I can’t begin to put a label to the jumbled feelings of pride, gratefulness, exhaustion, and other emotions this day conjures up for me. Thankfully, the graduate, like a victim of the tsetse fly, has little or no memory of the critical first years of his life. Before starting my own family, I was a trained special educator with a focus on instruction of kids with severe disabilities and autism. After a few years of teaching, I used my professional skills to help families of children with difficult behaviors at home. I stopped working after having my first baby girl and, less than two years later, welcomed Patrick into our lives. Having had a talkative little girl, my concerns that Patrick wasn’t meeting some of the developmental milestones were dismissed by professionals and friends. They reminded me that it was my professional background raising antennae for a child who would be perfectly fine.
I no longer had the strength to battle it By his first birthday, Patrick had endured more than ten ear infections, and by age three, he still wasn’t talking. The tactile sensation of clothing on his skin was so aversive to him that he ran around naked most of the time. As a stay-at-home mom with two children under the age of five, I no longer had the strength or energy to battle it. Patrick was quirky. Not aggressive, or naughty. Just different. His diagnosis was autism. I would be lying if I said it wasn’t somewhat of a relief for me to finally have an answer regarding what was different about Patrick. But I couldn’t come to grips with the fact that my smiling, cuddly son was part of the one in seventy boys his age who were diagnosed with autism. Ironically, the doctor who diagnosed him informed
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me that Patrick’s behaviors would be problematic in the future, and that I should seek help from the behavioral intervention project from our local university—the same organization that employed me in my younger days. That was one of many emotional stomach punches that were going to come my way; I just didn’t know it yet. As a professional I knew a lot about what was best for my son. But as a stay-athome mom in sweatshirts and sneakers, I constantly second- guessed myself.
Traditional milestones were always worrisome When I asked for my son to be included with typically developing children at our neighborhood school, and was asked, “Don’t you want what’s best for your son?” I had to stop and check myself. Was my insistence for the least restrictive environment that important? I can proudly say now that Patrick was the first student to receive special education inclusion services in both his preschool and elementary school… but not without a lot of sleepless nights on my part. Traditional milestones, like going to camp, school dances, and transitions were always worrisome. And the overriding questions of “would Patrick be happy and would this be the one thing that made a difference in determining a better future for Patrick?” have always haunted us. Photo Courtesy Molly Dellinger-Wray
“
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Don’t start to cry. I knew if my voice started to quiver just a little, my credibility as an advocate te e for Patrick would be dismissed d
In hindsight, I wonder how difficult my professional knowledge, combined with my mother bear instincts, made Patrick’s school team feel about working with me. Was I a problem parent? I knew from the research how critical it was to create positive partnerships between families and professionals. I was always walking the tightrope
~Molly Dellinger-Wray ay
between demanding the most for my son, and d striving to maintain that positive relationship. I steeled myself before each educational meeting with the same mantra, “Don’t start to cry”. I knew if my voice started to quiver just a little, my credibility as an advocate for Patrick would be dismissed. I rarely succeeded, and in my conversations with other mothers of special education students, no matter how strong they may seem, revealed the exact same sensations. Were these times truly the best circumstances for parents to be making decisions? Now I understand why parents ask for advocates to attend the meetings with them.
Some dismissed my concerns Communicating with professionals proved challenging, but the most painful conversations were, well frankly, other parents. Some dismissed my concerns (‘Nuthin’ in the world wrong with that boy!”), while others offered condescending advice (“Maybe if you tried reading aloud to Patrick more.”). To this day, I have not met another parent who has not struggled with this judgment and irritating, but well-meaning, advice. And the wounds run deep. Equally memorable, however, are the wonderful things. I have a deep and profound gratitude to so many of the professionals who taught Patrick, and urged me to
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“
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I have a deep and profound gratitude to so many of the professionals who taught Patrick, and urged me to have high expectations for him. ~Molly Dellinger-Wray
have high expectations for him. Their words were a lifeline that pulled me out of a vortex of paperwork focusing on deficits, poor test scores, and failure.
Like so many children, Patrick’s life experiences surpassed many of the expectations that we were given in his early years. We exposed him to as many cultural, athletic, academic, and travel opportunities as possible. Now, as a young adult, Patrick is helpful and gets along well with others. He started a job bagging groceries at age 16, and has always felt more comfortable working than socializing.
So close, but not so close A few days before his college graduation, Patrick called me to say that he would not graduate. He had all of the coursework and passing grades needed, but he came up short on the required extracurricular activities. The college would not award him a degree until the requirements are completed. Patrick cried. I cried. We all thought we were closing the chapter on school life, but, like so many things, it will take a bit longer to complete. When Patrick finally does walk across the stage to accept that diploma, I know the tears will be flowing. And I will say a silent prayer of gratitude to the kind and creative educators and tutors, the skilled therapists, the patient college professors, the devoted scout leaders, loving camp counselors and babysitters, the generous neighborhood moms, and of course, to Patrick, who overcame so many obstacles that he doesn’t even remember. Y Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.
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Just for
fun about Molly
What do you do to find time for you?
Spending time with my friends is very important to me, but it’s hard to find the time. I have several friends who walk dogs with me. It’s a great way to get exercise and stay connected.
Mommy timeout: Dream vacation? Spending time with my kids and their cousins, aunts and uncles up on the Canadian lakeshore. Favorite Qoute? With our thoughts, we make our world. Our mind is central and precedes our deeds. Speak or act with a pure mind, and happiness will follow you like a shadow that never leaves. - Dali Lama Finish this sentence: The world needs...? Dedicated and well paid teachers. My job is? Supporting people with disabilities at the Partnership for People with Disabilities at Virginia Commonwealth University.
Join the Florida APBS Network. Membership provides:
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Developing Self-Advocacy Skills: 4 Ways You’re Already Doing It and 4 New Things You Can Try
I Need...
by Amanda Morin
I
t’s never too early to begin teaching selfadvocacy skills and summer is the perfect time to start. As a parent advocate, you spend a lot of time supporting your child and speaking up for what she needs. You think through how her disability affects her in school, in the community and with family and friends.
What Is Self-Advocacy? Having you as an advocate serves your child well. But encouraging your child to find ways to understand and speak up for her needs will serve her well, too. If you break down self-advocacy, it’s about three things— the ability to understand your strengths and weaknesses, knowing what you want or need to be more successful, and being able to let other people know about your needs and decisions.
4 Ways You’re Already Supporting Self-Advocacy
1. You encourage your child to ask questions. Listening to and answering endless questions can be exhausting. But it’s your child’s way of learning more about how the world works and how she fits into the world. Keep encouraging her to ask questions, especially the hard ones You may not always have answers, but your child will learn that’s it’s okay to ask people to help find answers.
Ask
2. You let your child make Ask Questions? decisions. Letting your child choose
Questions?
That sounds like a lot to expect from your child, but it doesn’t have to be as big and overwhelming as it sounds. In fact, you’re probably already showing your child ways to selfadvocate and don’t even know it. Here’s what you’re already doing to help your child learn to be a self-advocate. PARENTING SPECIAL NEEDS.ORG JUL/AUG 2015 SPECIAL NEEDS.ORG 2648PARENTING
her clothes for the day or what you have for dinner seems like a simple thing—and it is. But it’s also a way for her to learn that she can make choices for herself and that she has some “say” in her own life.
3. You help your child find solutions. Helping your child find solutions to every day issues is not the same thing as fixing her problems. Solutions are the ways you teach your child to work with her strengths and around her weaknesses. They can even be small things, like cutting the itchy tags out of a shirt.
4.You celebrate triumphs, no matter how small. Teaching your child to celebrate the small things helps her learn to break goals into smaller steps. It shows her that triumphs don’t have to be big to be worthy.
4 Deliberate Ways to Teach Self-Advocacy You can also be intentional about teaching your child self-advocacy skills. That means finding ways to help her understand and talk about her disability and needs. Here are some ways to get started.
Make
Choices!
Celebrate Triumphs!
1. Help her define and describe her disability. Talk with your child about her disability and get a sense of how she thinks of it. The conversation will vary depending on your child’s age and ability to understand. For some kids, it’s important to be able to name the disability, but it’s also important to be able to talk about how it affects daily life. Help your child find ways to describe her needs in her own words, so she can feel able to explain them to other people.
2. Identify strengths and strategies. Talk with your child about when she feels the most successful and the best about herself. What is it she does really well? What is it that makes her feel confident in that setting? Help your child think about what works well for her and make a list of things that are helpful and things she wants her family, friends and teachers to know about. This can be anything from where she needs to sit in the classroom to how she prefers people to manage situations in which they ask questions about her instead of of her.
3. Create and practice scripts. It’s not always easy to know how to communicate what she knows or needs. Help your child develop some scripts for commons situations. You may not be able to predict where the conversation goes, but you can help her have some opening lines. For example: “Grandma, I don’t like it when people ask questions about me
like I’m not there. Can we talk about how to deal with that when we go new places?”
4.Talk about who to speak with, who should be there and when. As your child starts identifying issues that need solutions, encourage her to talk them over with you. Together, you can figure out who the person is that she should talk to for some help as well as if she needs your support for that conversation. For example, if she’s having trouble on the school bus, there may be times when it’s better to talk to the school instead of the bus driver. Your child may also need to learn when the best time to ask for help is. Let your child know there are times when it’s completely appropriate to ask for help immediately, especially if she feels somehow threatened or unsafe. But you can also help her figure out when it’s better to do it a little later, such at an IEP meeting or afterschool. Self-advocacy isn’t always easy or comfortable for kids. It’s a skill that takes practice and evolves over time. It’s good to keep in mind that teaching your child self-advocacy skills doesn’t mean you have to stop being her champion. I t just means you’re teaching her ways to be her own champion, too.Y Amanda Morin, is an early intervention specialist, education writer, special education advocate and mother of two children with special needs. Her latest book, The Everything Parent’s Guide to Special Education, aims to demystify the special education process and empower parents.
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Mommy’s Timeout : T ake k a time i out and use V isualization Meditation to relax. Imagine yourself here among the Great smokey mountains of North Carolina. Enjoy the beautiful colors in nature. Take a couple of deep breaths and begin to let go of any stress. Smokey Mountains , North Carolina Photos courtesy of ŠTyler Merbler/flicker.com Music courtesy Ryan Judd www.TheRhythmTree.com
breathing space your life
HANDLING YOUR CHILD’S DIAGNOSIS: Six Things Parents Should Do For Themselves by Deanna Picon
B
efore their children are even born, parents are already LZMIUQVO IJW]\ \PM N]\]ZM°ÅZ[\ [UQTM[ ÅZ[\ _WZL[ ÅZ[\ [\MX[ IVL LW_V \PM TQVM XZW]L OZIL]I\QWV[ IVL RWaN]T _MLLQVO[
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1. Give Yourself Permission to Feel and Heal Accepting your child has a disability ility is not easy easy. Parents experience a roller coaster of emotions such as denial, anger and hopelessness. You may feel sad, guilty or lonely at times. Keep in mind that these feelings and thoughts are perfectly normal and are to be expected, given your new situation. It’s ďŹ ne to have them every now and then. This does not make you a bad person or bad parent—it just means you’re human. Loving your son or daughter and doing the best for him/ her makes you a good parent, whether your child has a condition or not. Continuing to do your best in difďŹ cult circumstances makes you both a good parent and a good person.
2. Take Your Time Trying to adjust to a new life that you didn’t plan for or anticipate is difďŹ cult. You didn’t sign up for this any more than your child did. It’s important to take as long as you need to process everything, whether it is days, months or years. There’s no set timetable for healing and acceptance. If you ďŹ nd that you’re constantly plagued by worries, stress or negative thoughts, you might ďŹ nd it helpful to express your feelings. There are a variety of ways, such as writing in a journal, talking to a good friend or trained professional or joining a parent support group.
3. Separate the diagnosis from the child Raising a child with a disability does alter your life. However, it shouldn’t change the love you have for your son or daughter and the strong bond that naturally develops over time. If you only look at the behaviors and challenges, you are allowing your child’s diagnosis to be the focus of your relationship. The positive alternative is accepting your child for who s/he is, understanding that they cannot be blamed for their condition and viewing the disability as just another aspect of your lives together. Don’t let your child’s diagnosis stop you from seeing the person behind the disability and loving him/her unconditionally. And instead of focusing on what your child can not do, think about what they can do. Look for the special qualities and the little things that bring them comfort or happiness.
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4. Avoid Isolation Always remember, you are not alone, even though it can feel like you’re the only one in the world dealing with a child’s disability. It’s not your fault. You didn’t do anything wrong. There’s nothing to be ashamed about. You have friends and family who care about you. The support of others around can help you make it through the hard days, aid you in making good decisions, and provide the physical and emotional breaks we all need now and then. Above all, choose to spend time with people who make you feel at ease. If certain friends or family members make you feel uncomfortable by staring, making remarks or over-reacting to your child’s behavior, don’t associate with them. Maintain positive relationships with those who understand your child’s co ccondition ond dit itio ion n and support your familyy.
5. Ask For Help If You Need It
Image courtesy our Facebook Friends
PARENTING SPECIAL NEEDS.ORG
With most of your attention and time focused on your child, it’s easy to forget about your own needs. But it’s important to take care of yourself. After all, if you don’t, who will? Try to get at least six hours of sleep a night, eat properly and exercise. You don’t have to join an expensive diet plan or pay for a gym membership. A 30 minute walk, three times a week, is not only exce ex cellent ll t fo for f yo your heart; regular fresh air and exerci c se e alsso b benefits your mental health. You Yo u maay want to explore meditation or other rre rellaxation l techniques. There is plenty o of free information on healthy eating on the Internet.
You Can Do This! Y
There will be times when all the challengess and stress get on top off you, and you just need an extra pair of hands tto h hellp yo you u through. There’s no shame in asking for and accepting help from family and friends. Contrary to popular belief, it’s not a sign of weakness. It’s actually a sign of strength and courage to share your needs with others. So go ahead and ask your best friend to watch your child for a few hours so you can have some “personal time”. And your father won’t mind picking up a few items from the supermarket for you when he visits your family.
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T e s no getting around this. Your child’s There’ cond c dit itiion ion has changed your life. Butt nobo Bu b dyy gets the life they expected. bo Ligh Li ght gh httn nin ing st s ri rikkkes, plans don’t work out, things chan ch hange ge. Ev E er eryb ybody, yb yb with or without a special needs child in their lives, ends up in a place they didn’t expect and doing things they never thought they would. The trick is to do the best with the life you have. With the right perspective and a good support system, you will have a good life, and so will your whole family. Y Deanna Picon, is the founder of Your Autism Coach, LLC, which provides personalized guidance, support and seminars for parents of special needs children. She is a parent of a non-verbal, young man with autism. Deanna is the author of “The Autism Parents’ Guide to Reclaiming Your Life.” She can be reached at www.YourAutismCoach.com or @yourautismcoach.
Helping your child thrive and ÀRXULVK ABR improves... Respiration Digestion and food absorption Sleep Trunk strength and posture Weight-bearing performance Balance Gaze Alertness HAPPINESS T: 514-328-9837 info@abrcanada.com www.abrcanada.com https://www.facebook.com/abr.canada
your life excercise
by John Rowley
T
rying to fit in a workout while being a mom, and taking care of the kids, can be quite the challenge. With the warm weather here to stay, why not get out and enjoy a workout (and the sunshine) by taking the kids to the playground for some summer fun!? Not only will they be playing and burning off their energy, but you can also get a total body-toning workout at your local playground with these 5 exercises — no gym membership required.
PLAYGROUND WORKOUT Monkey Bar Holds – targets core, back and biceps 1. Reach up with palms facing you and hold on to the monkey bars. 2. Pull body up so that your chin is up over the bar and your feet are off of the ground. 3. Try and hold this position for 20 seconds and repeat 3 times
Slide Lunges – targets butt and thighs 1. Stand facing away from the slide, rest one foot on the bottom of the slide and place your hands on your hips 2. Bend your knee until parallel to the ground and return to starting position ** Make sure to not let your knee move farther forward than your toes Do 15 reps and repeat with the other leg
Jungle-Gym Standing Push Ups – targets chest, shoulders and triceps
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1. Pick a spot on the jungle gym (preferably a ladder if possible) and stand an arm-length away 2. Place your hands on a bar that is not higher that your chest 3. Keep your body straight and bend your elbows until they are at a 90 degree angle 4. Do 12-15 reps and repeat
Swing Knee Lifts – targets abs, back, and legs 1. Stand on a swing (a flexible seat will be more challenging) while holding onto the chains and balancing on left foot. 2. Stand tall as you slowly raise your right knee to hip height, pulling your abs in as you lift. Hold for a second. 3. Slowly lower your leg and repeat, keeping the swing and the rest of your body as still as possible. Do 10-15 times; repeat with opposite leg.
Monkey Bar Knee Tucks – targets abs 1. Go to the monkey bars and grab it with an underhand grip 2. Hang from it and tuck your knees up into your body, hold for 2 seconds and then slowly lowering the legs ** Make sure you move with control so you don’t swing Repeat 10-15 timesY John Rowley Certified Personal Trainer, Best Selling Author and ISSA Director of Wellness, is a widely recognized fitness health and wellness expert who helps others transform their bodies and help them find their passion, purpose and drive for success. Rowley’s expertise goes beyond staying physically fit. He changes lives and offers many self-help tips in every aspect of life. Visit: www.johnrowley.net
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
by Eric Chessen, M.S., YCS
I
f we can agree that fitness is an important aspect of optimal development for the autism, special needs, general, non-general, non-denominational, amphibious, and quadruped populations, it would make sense that it be considered and taught as a life skill. If we’re teaching skills that should be performed over a lifetime, there should also be an emphasis on fun. The more we enjoy doing a particular activity, the more we’re likely to engage in it over time and independently.
The Fitness Industry’s Needs and Wants The fitness industry is a constant balance of needs and wants. Apart from sport-specific athletes (who, by the way, also care about the aesthetic qualities of training), most people begin some type of fitness/movement activity either to feel more active/healthy, improve body composition (fat loss, muscle gain), or a combination of both. While some people discover aspects of fitness and movement that they really enjoy, others “try working out” and then decide that they hate it. Most big commercial gyms are not….repeat NOT… designed to provide the best possible fitness experience. They are designed to maximize the amount of paying members and minimize the utilization of floor space. They don’t even want you there, or at least most of you. If monthly rates are low enough they can have a thousand paying members, ten percent of whom show up on a regular basis and jump right onto the cardio machines (treadmills, elipticals) which are, surprise, somehow miraculously all over the place. Why is this? Why would many gyms want to minimize fitness and
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set a poor example of what effective, and yes, reinforcing fitness can be? Changing the Dreaded “have to” Fitness
Embrace being Active Many adults consider going to the gym a “have to” experience if indeed they do venture out. From a social and cultural perspective, it is difficult to teach fitness as a life skill if we, or the vast majority of us, detest the standard fitness environment and/or what is commonly considered physical fitness, how can we pass on the embracement of being active? Overwhelmingly, people need to gain strength, stability, and better movement. My Autism Fitness athletes need to gain strength, stability, and better movement. Your grandmother needs to gain strength, stability, and better movement. It is all, as one of my great influences Coach Dan John would describe, “Simple, but not easy”. So we have to make it fun and reinforcing, especially for populations who find it aversive. Late-night DVD infomercials and high-end Yogalatespinning ™ studios will convince people that they are offering some magic way to get the fitness results that you want, regardless of whether the program is contrary to what you need in order to get those outcomes. At respectable strength and fitness conferences around the country there are caring, competent trainers and coaches discussing the best way to explain that unless it can literally change your genetic composition, your DNA structure, yoga will not give you “long, lean muscles.”
fun fitness health & fitness So what the “cronk” does the information above have to do with long-term fitness for the autism and special needs populations? First, programming. An understanding of essential physical needs will allow us to create the best possible programs for any individual. What are the qualities that are important? What is the individual’s current ability and what would appropriate goals be? I think some people are thrown off by the repetition in my sessions. My athletes perform the same exercises, in varying orders, many times. And then one day something clicks, and they can perform a squat independently, or can “bear walk” five more feet than last week, or begin requesting a specific exercise. Repetition allows the athlete to become familiar, comfortable, confident, and capable. By progressing from the current level of ability, we can promote actual skill development and independent mastery.
Let’s consider some common daily life skills: Walking up and down steps, sitting/standing, reaching for objects both high and low, carrying objects, opening doors/cabinets/drawers, bathing and personal hygiene. Nearly all of these are enhanced through stronger and more stable pushing, pulling, squatting, and locomotive movements. So we build programming around squatting, pushing, pulling, and locomotive movements because we know this is what will provide short- and long-term benefit.
Second, motivation and reinforcement. If we make something as enjoyable as possible, chances are better that it will become habit. An individual seeking out exercise activities during independent time is just about the best outcome I can imagine. If, based on assessment, we know what exercises and activities would enhance current skills, making the sessions enjoyable is the complimentary piece. A supportive environment is one that limits anxiety and provides opportunities for success. What this translates to is choosing progressions or regressions that the athlete can perform, replacing “Have to” instructions with “Let’s try this…,” leaving room for choice of activity, and providing plenty of behavior-specific praise (not just “great job,” but “Great job bending knees on that jump!”) There are legions of children, adolescents, and teens who played a single (or multiple) sports for years
and then (strangely and oddly and, for some of us, very predictably) woke up one day and decided they didn’t want to participate anymore. So now what? General fitness and active play programs don’t suffer from the same constraints as sports-based programs. With general programs, we can build the activities around the individual, even in group situations. We can be far more creative, allowing for autonomy, choice of exercises, and even create completely new games.
Ensuring Health, Ability & Happiness Long-term fitness engagement is a process of covering the needs of each individual (which are overwhelmingly similar), and meeting those needs with appropriate activities that are made simpler or more challenging (regressed/progressed) according to current ability. Equally important is the pairing of exercise with a positive environment, access to reinforcing or preferred activities following success with a specific activity, and gradually building in autonomy with exercise choices and creativity through building new activities together. In following this guideline we can better ensure a life of health, ability, and happiness for those with autism and developmental disabilities.Y Eric Chessen, M.S., is the Founder of Autism Fitness. An exercise physiologist with an extensive ABA background, Eric consults with families, educators, and fitness professionals around the world. Eric works with his athletes in the NY metro area and is the author of several E-books. Visit AutismFitness.com for more information.
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Food Allergies/Special Diets by Barrie Silberberg
Y
ou’re sending your child off to college in the fall, or perhaps, in the next year or two. If your child has food allergies or is on a special diet, the following information may help you create a good action/ management plan. Having a solid base of knowledge and information will enable your student to enjoy a healthier and safer college experience. Students should be fully aware of their food allergies or special dietary requirements before leaving for school. Communication, preparation and cooperation are critical elements in managing food allergies.
Research doctors and specialists in the area around the college should additional care become necessary. Program ICE (In Case of Emergency) numbers into your cell phone of those people who need to be notified should you have a reaction. You can buy clips or patches to put on purses, backpacks, gym bags, etc., stating there is an epi-pen inside. It is always a good idea to wear a medical alert bracelet or necklace in instances of life threatening allergies. Make sure all medications are readily available and not expired.
COMMUNICATION
Contact the Disabled Student Center to see if the school is able to assist with accommodations. Some schools offer private rooms or apartments with cooking appliances and refrigerators to avoid cross contamination for life threatening and severe allergies. You should provide a copy of your emergency treatment plan to the Food Services Director, Health Care Manager, food and kitchen staff and your resident advisor. It’s also a good idea to post your ETP in a central location in your dorm room or apartment so it is readily accessible.
Open and honest communication with all parties is vital. A trip to the Disabled Student Center to discuss specific needs and challenges is of primary importance. It is also crucial to arrange a meeting or conversation with the Food Services Director and the Health Care Manager at the school. Have your questions ready to ask about food preparation, cross contamination avoidance, additional costs associated with special dietary restrictions and any other allergy related concerns. Alert everyone around you: kitchen staff, teachers, roommates, the resident advisor (R.A), etc., about your allergies and the reactions you have experienced in the past. You should also tell them if you have an epi-pen, where it’s located and teach those closest to you how to use it.
PREPARATION Emergency care preparation is another step toward safety and peace of mind. Prepare an emergency treatment plan (ETP). Find out where the closest hospital and 24-hour pharmacy is in relation to the university.
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COOPERATION
TIPS There are many different medical alert bracelets and necklaces available for students to wear. Some of the newer ones are made of silicon (www.americanmedical-id. com/category/silicone-medical-ID-bracelets-7) and they are more comfortable and can be worn 24/7. The Asthma and Allergy Foundation of America (www. asthmaandallergies.org/food-allergies/going-to-collegewith-food-allergies/) offers some great tips and brochures for dealing with allergies while at college.
If private rooms are not available at your school ask about keeping a micro refrigerator and pantry in your dorm room to have safe snacks available at all times. Be sure no one else has access to your food. You may want to consider getting a few locks, just to be on the safe side. One curious or hungry dorm mate might jeopardize your health or your life, without even realizing it.
For More Information Check Out These Sites: Many colleges and universities are making changes to assist students who have special dietary needs. The following sites will give you an idea of what to look for at the schools you’re investigating:
DON’T GET CARELESS
Elizabethtown College http://www.etown.edu/offices/dining/nutrition.aspx NEVER become complacent or careless about what William & Mary you consume or touch. Don’t be afraid to ask to see labels, http://www.wm.edu/offices/auxiliary/dining/specialdiet/ and read them carefully. Don’t trust any food you haven’t Dartmouth College prepared yourself, unless you’re 100% sure that it is safe. https://www.dartmouth.edu/dining/nutrition/ Others don’t necessarily understand your allergies; they University of Michigan may be unaware that they used a certain type of oil, or http://www.housing.umich.edu/dining/allergies used something that has a component of milk in it. What http://nutrition.housing.umich.edu/NetNutrition/1 they don’t know could hurt you. University of California, San Diego If a specialized diet or food allergies are important http://hdh.ucsd.edu/tastebuds/specialty.asp considerations for you and your child when deciding on which college to attend, you should become aware of To avoid certain allergens at college here are some helpful sites: http://www.foodallergy.org/managing-food-allergies/at-college and informed on the school’s ability to meet your child’s http://www.celiaccentral.org/college/ special dietary requirements (www.foodallergy.org/ http://www.glutenfreeliving.com/gluten-free-lifestyle/kids/gluten-free-college-tips/ resources/college-students). Y http://udisglutenfree.com/2013/05/02/the-top-10-gluten-free-campuses/ https://www.foodallergy.org/allergens/milk-allergy http://www.laurenshope.com/products/298/silicone-allergy-alert-bands http://www.medids.com/SiliconeBraceletsWristbands.html#.VXeaZ9K4TMo
© The Monday Campaigns, Inc
Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-byStep Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others Interventions. Her web site is: www.puttingyourkidsfirst.com
Now we get Mondays off!
One day a week, cut out meat.
by Molly Dellinger-Wray with Meme Hieneman
A
s my son prepares to graduate from college, I reflect back on the arduous and gratifying journey of raising a child with autism. I think about trying to help my son develop the skills and tolerance he needed to succeed, especially when faced with barriers imposed by well-meaning professionals, intransigent systems, and advice-pushers in our lives (e.g., “Don’t you think it would be better to…”). I also think about the champions – the teachers, coaches, employers, and friends - who supported us, creating opportunities for my son to be included and accepted in typical, meaningful routines and experiences. As I take this journey back in time, it becomes clear to me that there were certain key ingredients to our success:
Use Social Stories. A child who does not
Always Plan Ahead. Before any
attend to details (or understand social nuances) can often get confused about upcoming events, which is anxiety-producing. Telling a “story” at the end of the day about everything that happened that day, and the expectations for tomorrow’s schedule can be a big help.
new endeavor, take some time to visit the facility and orient your child to the surroundings. For example, we always dropped off our school supplies a few days before school began so that we could see the classroom and where my son would be seated, lessening his anxiety about the new school year.
Teach About Family. Living far away from close family members or having limited exposure to them is challenging. Create a picture “board book” of people in the child’s life and look through it regularly. Provide short bits of information on each person, such as, “Here’s Uncle Peter. He is married to Aunt Carolyn and he gave you a teddy bear when you were born.”
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Prepare Other People. Talk to people who will be working or interacting with your child to make sure they understand his strengths and needs. Do not assume that information has been shared between professionals or that people will understand without explanation. Review educational goals with teachers and expectations and skills with others supporting your child.
Promote Self-Advocacy. Being your child’s advocate is important, but ultimately you want your child to communicate with others to meet his needs – even if that communication is uncomfortable. For instance, if your child wants to quit the Boy Scouts, encourage him to tell the leader (even if you help by preparing the adult for the conversation). Likewise, if your child is to sell raffle tickets, candy, popcorn or cookies, don’t usurp his power by taking over. Guide him to approach people or send emails. Allow your child to have the empowering experience of accomplishment and control over his own life.
Foster Friendships. In preschool, encourage social skills by setting up a play date at least once a week. Although you may be tired and overwhelmed, even an hour spent outside of school with a peer provides great role modeling and encourages relationships. Once your child is older and more skilled at friendship, encourage him to choose his own friends and organize the activities.
Listen to Your Child. It’s painful if your child doesn’t want to participate in things that you think that he should enjoy, or that you enjoyed as a child. For some children, amusement parks, fairs, children’s museums, holidays, and parties can be very stressful. Avoid shaming or blaming your child if you have worked hard to make something happen that he just does not enjoy.
Build Resiliency. Model how to behave when things don’t go your way by expressing frustration, engaging in problem-solving, and accepting losses. During games with your child, say things like “I lost this game but I’ll try to win the next one” or “It’s a bummer to loose, but it’s only a board game. I have other things I do well”. Help your child generalize these skills across challenging circumstances they may face. Looking back, these elements were helpful in my son’s journey. I hope that he takes what he has learned with him to face life’s joys and difficulties throughout his adulthood.Y Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.
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PERSONVENTURED
by Amanda Morin
Entrepreneurship:
d l u o h S e n o y r e E = Ev “I sincerely believe that if you ignite the spark that lies in all children— whether they are special needs or not— every single child will exceed realistic expectations.” ~ Kristine Barnett Author of The Spark: A Mother’s Story of Nurturing Genius
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WHAT DO YOU KNOW ABOUT ENTREPRENEURSHIP? Are you an entrepreneur? Do you know an entrepreneur? Is your knowledge of entrepreneurship limited to the characters as seen on ‘Shark Tank’ and the movie “The Social Network”? What do you know exactly about entrepreneurship other than that it involves starting your own business? Does the venture sound as complicated as the word describing it?
Part IV of IV | A Picasso Einstein Series
p i h s r u e n e r p e r t n E n o d e t a c u d be E What does it take to be an entrepreneur? How smart do you have to be? How creative are entrepreneurs? Does the entrepreneur come up with all the ideas on his/her own? Is someone born to be an entrepreneur or is it something that can be taught and learned? Why are some entrepreneurs successful, and others less successful? How does an entrepreneur deďŹ ne success? Lots of questions, we know. But asking questions like these is an important start to your journey down the path of self-employment. Why? Because it helps you meter what you know, versus what you don’t know, coupled with what you are unsure about. It also measures your perception of entrepreneurship and how you feel about it. There are many more questions one could ask, but these will get both your mind and your heart stirred enough, to want to ask more questions.
WHO DO WE MEAN BY EVERYONE?
WE ENTREPR ENEURS
As you may notice the title of this article, we suggest everyone be educated on entrepreneurship (selfemployment). ButMorin whom exactly are we referring to? Well by Amanda in general, studies have shown that anyone exposed to & taught the fundamentals of entrepreneurship, show clear indications of better performance and problem-solving
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l u o h S e n Everyo
in the workplace. Harvard, in a study with the Network For Teaching Entrepreneurship (Also known as NFTE – Pronounced ‘Nifty’), proved that students whom were taught entrepreneurship at a young age, tested better in school, improved their interest in learning and increased their sense of work ethics. Well, one might say, that because the study was done with neurotypical students, it holds little weight when speaking of students with disabilities. The reality is, the fact that a student has a disability, does not mean they are any less competitive and innovative than neurotypical students. In all actuality, we have seen here at Picasso Einstein that students with disabilities
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are more competitive than those with no disabilities. We have seen students whom prior to learning entrepreneurship had lived a life simply going along with the plans and activities that were set before them by their parents and therapists with little input of their own. After learning entrepreneurship they wanted a say in their lives, a stake hold in their future, an impact on their own decisions in life. Yes, these changes were shocking and difficult for some families to manage, but they were fundamental changes in attitude and selfdetermination nonetheless.
Parents are no exception to the rule. When we first started teaching individuals with disabilities about entrepreneurship, they were going home to families that would stifle the idea of them being self-employed. So what did we do? We started “Project Family”, a course that involves the parents and caregivers in the entrepreneurship learning process. We realized early on, that the immediate sustainability of these business ventures need the
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“ How Do I Get Started”
The Best Executive Summary WINS! The contest is now open for submissions of your executive summary. Entries MUST be received no later than August 10, 2015 (no exceptions please). Send submission to submit@parentingspecialneds.org, include “Entrepreneur” in the subject line.
CAN Do! their
WANTS?
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Win BIG! Biz Start- Up Kit , which includes the following: s ,OGO DESIGN s 3LOGAN s &LYER DESIGN s "IZ CARD DESIGN
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4-Part SERIES This 4- part series now open to submitting summaries during parts 3 and 4.
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L = Learn Entrepreneurship O = Objectives of “Person-Venture” Entrepreneurship
V = Viable Concepts E = Everyone Should be Educated on Entrepreneurship
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download list of questions Click here >>
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parents to be involved, versed on self-employment and most importantly, convinced that their son/daughter could fully participate in the venture. A sad reality we deal with all too often, are parents who think selfemployment is beyond their children. Many parents have succumbed to the very system that would have all of us focus solely on the disability, and lose sight of the potential abilities. Additionally, many parents have never been entrepreneurs and so therefore, the ability to buy into self-employment is difficult because of the lack of information and/or misinformation about basic microenterprise and self-employment understandings.
Caregivers, Professionals & Teachers can be powerful influencers in a self-employment venture. Individuals involved in the life of anyone with a disability have a unique opportunity to either fuel the fire of self-employment, or stifle the desire. More often than not, professionals struggle to understand how to fully support a self-employment venture. Sometimes the struggle is due to the common disproportionate focus on one’s disabilities, but most times it is simply due to one’s lack of entrepreneurial experience or understanding.
Peers, Friends and Family members are the key to long-term sustainability. As part of a needed measure of sustainability, this group of individuals increases in value exponentially when parents pass away, divorce, separate or when they age. Peers, Friends and Family members keep a business venture sustainable, stable and manageable for persons with disabilities especially during moments of psychological & emotional stress. It does not matter where they live, how old they are, or if they are actually blood relatives. Anyone whom the entrepreneur considers to be “family” and/or “friends” can be put to good use when supporting a selfemployment venture.
WHAT DOES “EDUCATED ON ENTREPRENEURSHIP” MEAN? DON’T BE ALARMED! There is no need to go back to your local university. When we speak about getting educated on entrepreneurship, we mostly mean get ‘UN-educated” about entrepreneurship. Most people have the wrong idea about starting a business. Thanks to shows like Shark Tank, one might think you must have an incredibly innovative idea, or have all of your ideas
Jacob Barnett | TEDxTeen
organized for the business. Thanks to other media, like the movie “The Social Network” one might think that ideas only happen on a Harvard Campus or the like. And lastly, the newest “entrepreneurial movie” to hit the stage was “Steve Jobs” touting the theory that one person creates and others stand around and watch. When we say get educated on entrepreneurship, we really mean have the right education and perspective on micro-enterprise ventures. Simply put, we encourage anyone and everyone to read about, speak about, exchange ideas and concerns, and share stories of both successes and failures in the pursuit of self-employment. In other words, learn the fundamental basics of microenterprise, not the Hollywood story. With publications like Parenting Special Needs Magazine, accessible throughout the world, as well as countless other sources online, learning about micro-enterprise self-employment has never been easier. There is no need to have an MBA or PhD in entrepreneurship in order to become an entrepreneur. Keep it basic, just like self-employment.
MOST OF LEARNING IS DOING! If you have ever heard of Jacob Barnett (young doctoral student with autism currently re-writing Einstein’s Theory of Relativity at the age of 17) then you know that his mother was told he would most likely never speak.
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PERSONVENTURED anda Morin
Entrepreneurship
Wow, were they wrong! Look up “Jacob Barnett ted talks” on YouTube. You’ll see what I mean. More importantly though, is not only that he can talk, more so that what he says is amazingly profound. In his presentation he is adamant about the need to ‘stop thinking’ about things and to simply ‘get busy doing’ things. He even relates the stories of very famous “thinkers” in history who really only invented things when they were not busy reading, research, or thinking, but instead, when they got their hands busy doing. Know what the person with a disability loves to do, learn how other people make money doing the same thing, and try to make money too. There are countless tools online and within your local community that teach basic business elements, micro-enterprise fundamentals and most importantly, provide guidance on how to get started.
Start off simple. Here is a quick sample on how you can get “doing.” Get the person used to referring to their hobby as a career. How? Work with the person in coming up with a name for the business (even if it is temporary). Create a business card with business name on it & their name on it. Why? Because any opportunity you have to materialize a business into a tangible visual support, the easier it is for the person to visualize the reality of the venture. Start designing a website and/or blog on WIX.com. It is a free online website building tool that allows the person, the family and the business support to connect with the world and its potential clients. To our dear men & women with disabilities: These four articles, although often addressed to the parents, are all about you. It is a petition to all individuals in your lives to look beyond your disabilities and be ‘ALL IN’ for your abilities. Don’t take no for an answer & don’t say no unless you tried and failed at it first. And if you have failed, celebrate the fact that you have tried something new and even scary. If you succeeded, then you have succeeded in the act of trying and doing. Don’t stop doing. Don’t stop trying. You may not be an entrepreneur now, but you can be, if you want.
Parents, please remember, if the plans you have your child’s future, are constructed on and around your presence, then what will occur when your presence is lacking, permanently? As difficult as it may be to think of the day when us parents will no longer be, we beg you to try. Think about it. Plan around you NOT being here. Create opportunities that allow your child to participate in things that DON’T include you. Help them build a business that will be their best friend, their confidant, and their protector for the rest of their lives. So, in conclusion, anything you have planned for either yourself, or a loved one with disabilities, please remember, if it lacks L.O.V.E. it will struggle to survive the years. If it has L.O.V.E., it may not always demand success, but without a doubt, it guarantees positive results. Y
For more information about Entrepreneurship take a look at these websites: Ask Important questions to get started. Use the Self-Employment Considerations Document Here: http://media.wix.com/ugd/c132db_917 13af885304a67b1cebf90655902cc.pdf
Reference websites on entrepreneurship learning, activities and games. http://www.nfte.com/ http://www.entre-ed.org/ http://www.teachingkidsbusiness.com/ http://www.innovationexcellence.com/blog/2013/08/14/50ideas-to-bring-entrepreneurship-into-the-classroom/ http://www.truesmarts.com/ http://bizkids.com/
Reading Materials: http://www.smallbusinessnotes.com/small-businessresources/disabled-entrepreneurs.html https://www.sba.gov/content/people-with-disabilities Minerva Vazquez Santiago, co-founder, is a succussful attorney focused on special needs law. She has experienced entrepreneurship for the past 15 years. Boaz Nelson Santiago, co-founder, has a background in psychology specializing in youth leadership and entrepreneurship education the past 15 years. www.picassoeinstein.com
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parentingspec arentingspe c ia ialne ialneed a lne ne e ed eds dss .org d
Temple Grandin, PhD Doctor of Animal Science
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As a doctor of Animal Science, Temple has been instrumental in the way we treat animals. She is a Professor, Inventor, Author, and Consultant. She is the basis for the eponymous, award-winning HBO movie. Temple was diagnosed with Autism in 1950 at age 2.
no limits!
Support Different-Ability Awareness
by Amy Barry and Tara Rocha
M
obile technology is helping Nathan, a Kindergartener with autism, meet his educational goals. Technology projects that require Nathan to not only write about his creations, but also explain them in words have helped him to work towards his communication goals. Kidspiration Maps is a terrific learning tool for children to organize ideas and express thoughts in creative ways. He also uses reading apps, problem-solving apps and is often rewarded with time to play fun apps. Apps like My PlayHome and My PlayHome School are used to encourage verbal storytelling and develop language and play skills. Nathan and his tutor read and listen to audiobooks and use reading apps like Endless Reader to build vocabulary and word pronunciations. One of their favorite apps is the You Tell Me Stories series, where he reads along, using their patented WordWinks and then Nathan has to go back and retell the story using the in-app recording feature Retell, Record, & Share. As a reward for focused learning, and if he has not had much screen time that particular day, Nathan gets to play some of his favorite apps like Angry Birds and Cut the Rope. Unbeknownst to him, these games are also great for developing problem solving. Nathan’s parents and tutor use the iPad’s Guided Access feature found in accessibility tools to help
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Nathan stay in the apps and set a timer for the amount of time that he needs to work in each app. Nathan is motivated by technology. And, although it can be used for educational purposes, if not used correctly, it can be counteractive to his social goals so his teachers and therapist monitor usage closely.
FEATURED APPS! Kidspiration Maps Reviewer Comments Kidspiration Maps is a great app for classroom or individual use brought to us by the same company that brought us Inspiration Maps. Kidspiration was designed to help kids organize and classify information, work on sight words and expand ideas into written and verbal expression. Using this app, kids can create Venn diagrams, story maps and webs to help them understand what they are learning.
HandCraftEdASL
My Playhome Reviewer Comments This is a fantastic app! It is a great tool for language development as well as pretend play. Think of it as a virtual doll house. We have used this app with children between the ages of 3 and 8. Boys and girls enjoy the app. The app is appropriate for children to use independently as well as an assistive app with an caregiver, therapist or teacher. The child can move 5 family members throughout the house and interact with many features in each of 4 rooms, activating elements as they go along. For example, the characters can shower and then dry off with a towel in the bathroom! They can brush their teeth. The toilet flushes!
You Tell Me Stories Description You TELL Me Stories are bright, colorful ebooks created by educators and language experts. But, behind them is cutting edge science designed to show you HOW to read to your child in a way that stimulates conversation and builds listening, thinking and language skills, along with the knowledge and confidence that will serve as the strong foundation for the reading, writing and thinking abilities they’ll develop in school and beyond.
Cut The Rope
Angry Birds
Endless Reader
Reviewer Comments
Reviewer Comments
Description
This physics-based puzzle app kept our group of students engaged for extended periods of time as they worked to cut the rope in a way that would allow candy, cupcakes, and other objects to drop into the little green monster’s mouth, collecting stars as bonus points. We found that the ease of trying again to reach the next level, excited and motivated students, keeping them coming back for more. Although it was often use of trial and error, we saw a plethora of opportunities that built on creative and critical thinking as students worked to figure out the best ways to cut the rope.
Angry Birds as an educational app!? We are saying YES! Teaching and learning opportunities exist everywhere for the creative educator and parent, and we at BridgingApps, believe that even includes games such as Angry Birds. Keep on reading to find out how to turn this app into a great learning tool.
This app introduces “sight words” because kids need to recognize these words by sight in order to achieve reading fluency. Recognizing sight words is advantageous for beginers because many of these words have unusual spellings, cannot be sounded out using phonics knowledge, and often cannot be represented using pictures
If you are interested in reading more about how children are using technology to improve skills and enhance their lives, please go to BridgingApps.org.Y Amy Barry is the Content Manager and Editor at BridgingApps and mother of five children. Tara Rocha is the Digital Content Specialist with BridgingApps and mother of four young children. Cristen Reat is co-founder of BridgingApps and a mother who found success when using a mobile device with her children who have special needs. All share a passion for mobile technology in education. JUL/AUG 2015
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fun & functional power of play
by Barbara Sher
S
ince everyone has shoes in their house--often a lot--you can use them when the kids need to let out some energy by playing the Shoe Mountain Jumping Game. Young kids love to jump and Shoe Mountain is a fun way to increase coordination and muscle awareness. There is a short way to play the Shoe Mountain game and a long one. The short way is to pile a bunch of shoes on one end of the room. Call the pile of shoes “Shoe Mountain”. One by one players start running from one end of the room towards the mountain and when they get there, leap over it! Make sure, of course, there is room to land on the other side of the mountain so nobody bangs into the wall! You can add to the joy of leaping by doing a drum roll. Add drum sounds by slapping your thighs or clapping your hands while the player is running. Then, as the child makes the grand leap, shout her name! It will sound like this: clapclapclapclapclap Roxanne! Children love hearing their name yelled out! You can make this fun game successful for all ages by spreading out that
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mountain so that it has some high points and some low. Just like real mountains do. The longer version of this Shoe Jumping Games has a trail leading to the Mountain. The trail starts with one shoe, then two, then three and so one. Each jump on the trail is a little longer than the one before and takes a little more energy to get over. The final jump is the leap or jump over the mountain. It takes good lower body strength and spatial awareness to jump increasingly longer distances and it’s a good challenge If you want to add more challenges, ask your players to jump sideways or backwards or even add a twirl in the air before they land! Whether it’s a series of small jump or just a gigantic leap, you’ll find that big broad grins will also be part of this game!Y GOT GAME? Barbara Sher’s ten books in eleven foreign languages has a gazillion ideas on ways to play with your child whether you’re a parent of one or an inclusive teacher with many. To see which of Barbara’s books and CD fit your needs, check website : www.gameslady.com
learning to sign fun & functional
by Angie Craft
A
BA CK T O SCHOOL
s we begin to prepare for another school year, it is time to get our Deaf and Hard of Hearing (DHH) child ready for their school day. Specialized equipment for your DHH child needs to be taken hild’s care of as much as getting a new pencil box. Your ch ated hearing aids need to be inspected, cleaned and updated if necessary before returning to school. Please be sure that an ample supply of hearing aid batteries are sent with your child and replenished weekly as needed. You should also send in a hearing aid case so if your child needs to remove their hearing aids for whatever reason during the day, they are not lost/damaged during the day. Getting your child back into a routine of preparing for school is also important. Devices for DHH children and other devices for around the house (i.e., alarm clocks) can be found in resources such as; ADCOhearing.com and Harris Communication. Both companies are wonderful suppliers of equipment and novelty items for those who are deaf or hard of hearing. Some great parenting sites for DHH students are: ASLized.net; deafchildren.org and Hands and Voices. Reading stories is always important. Some great apps with ASL stories are Signed Stories; The Baobob;The Boy that Cried Wolf and The Blue Lobster.
ROUTINES
Last year in the state of Florida, we worked on assuring that COMMUNICATION all children with the label PLAN of DHH on their IEPs would have a completed Model Communication Plan in place during their IEP meetings. This is a document that reviews the type of hearing loss the student has, equipment types used with the student and certain accommodations necessary for their success in their current educational placement. Your input should have been asked in regards
to this form and the types of communication your child is currently using to access their school environment. Please check to see if your child needs one of these in your state and if your district is making this accessible for you. You can check out more information on fldoe.org or with your school’s liaison representative. Other important screenings are an updated audiogram SCREENINGS & and a screening for Usher ANNUAL UPDATES Syndrome. Annual updates to your child’s audiogram are usually mandated at each IEP to keep the DHH services. I know, most don’t happen annually, but when schools lose funding during audits, then no one wins. Usher Syndrome is a rare syndrome that is genetic. If your child has a sensory neural loss from birth in both ears, then your child should be screened at least once starting as early as 3rd grade and sometime between 7th – 12th grade. A screening assessment is done by the DHH teacher and the Vision Specialist. If more extensive testing is needed, a letter of recommendation will go home to the parents for them to seek a medical opinion. For more information, please visit http://www.nidcd.nih. gov/health/hearing/pages/usher.aspx. I hope you have found this information useful as we approach another school year.Y Angie Craft, author and teacher, brings 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
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9S ` :S[]\ >]c\R 1OYS Encouraging Speech & Creating Yum!
by PSN TEAM Language Tips by Becca Eisenberg
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Pound Cake
Pound cake make ahead using our recipe here or buy your favorite pre-made pound cake.
Glaze 1 cup of confectioners sugar 1-lemon 1-2 tablespoons of fresh lemon juice it makes a difference 1 tablespoon of Kefir Plain
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ho doesn’t love pound cake? I wanted to make a pound cake, but, wanted to add a nutritional boost without compromising texture or flavor. I decided to add Kefir Yogurt to the recipe (you can find it here). The pound cake was sweet, lemony and absolutely perfect. To achieve the best results with this pound cake, make the cake the day before or buy your favorite pre-made poud cake. The glaze makes the cake it fresh and lemony as well. Drizzle over the pound cake, let the glaze dry and you will achieve absolute “pound cake heaven”.
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foodie fun fun & functional
2W`SQbW]\a T]` 5ZOhS /RcZb 1VWZR( Measure out one cup of powdered sugar and put in a bowl.
/RcZb 1VWZR( Cut lemon in half. A
child can squeeze lemon juice into a small dish, and catch and remove any seeds. Once you have lemon juice, measure out 1-2 tablespoons (depending on taste)of the lemon juice and add to powdered sugar.
1VWZR( Measure 1 tablespoon KeďŹ r and add to bowl with other ingredients.
1VWZR:Whisk together ingredients until
you have the right consistency. I like my glaze thick and spreadable. If you want it thicker, add more sugar. To make thinner, add more lemon juice or KeďŹ r.
1VWZR( Using the whisk, drizzle glaze over top of pound cake.
/RcZb( Add lemon zest on top of the
glaze to ďŹ nish the cake. Optional: we used a micro plane to grate the lemon rind.
/RcZb 1VWZR( Cut into slices and serve
3Ob BOZY 3\X]g
:O\UcOUS BW[S BW^a( 1.Build vocabulary with nouns and actions! Nouns: pound cake, lemon zest, knife, sugar, lemon juice, lemon, keďŹ r, bowl, whisk Actions: cut, whisk, measure, mix, zest, add, create, taste, eat, slice.
2.Colors and Size: Compare the different ingredients and their various sizes. When you buy the lemons at the market, choose some small ones and some larger ones. To work on colors, pick up a lime and discuss the color difference between a lime and a lemon. With regard to size, you can work on more complex concepts when you cut the lemon. First, cut it in half, then a quarter, etc. Have your child identify the largest and smallest pieces. 3.Comment and Describe! Encourage words such as sour, sweet, moist, smooth, creamy and wet. Help facilitate comments such as “The lemon tastes sourâ€?, “The lemon zest smells ____â€?. Encourage more speciďŹ c vocabulary that describes the food in detail.
4.Sequencing and recalling information: Follow the sequence of the recipe and emphasize the steps of mixing the ingredients for the glaze. You can even focus on just the sequencing events of squeezing the lemon (ďŹ rst cut the lemon, then squeeze the lemon and then take out the pits) 5.Answering and asking “whâ€? questions: Sample “whâ€? questions include, “What are we making?â€?, “What makes the cake sweet?â€?, “How do we make the glaze thinner?â€?, “What ingredients did we use to create the glaze?â€?. Encourage your child to ask questions. If your child has difďŹ culty with this, have a list of questions either written down on in picture form to help facilitate asking questions.
Literacy! Literacy Tip! Focus on key words in the recipe and ask your child to identify the written word in the recipe. Words such as the nouns and actions above would be an excellent place to start. Use a highlighter to make those words stand out! Recommended Books: The Red Lemon by Bob Stake, Lemons are not Red by Laura Vaccaro Seeger
Becca Eisenberg is a mother of two young children and a speech language pathologist, author and instructor. Her website, www.gravitybread.com encourages learning time during mealtime. On her website, she writes children’s book recommendations, app recommendations, as well as child friendly recipes with language tips their family. JUL/AUG 2015
PARENTING SPECIAL NEEDS.ORG
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proud moments® celebrating triump hs
Sharing“I CAN!” attitudes Go Patricia; Go Knights! My little sister, Patricia Moody, is quite amazing! She has destroyed stereotypes and other’s preset limitations with graceful ease just by being herself! I thought it was amazing when she graduated High School! Watching her walk across that stage felt like it might be the culminating moment in her life! But not for “Puh” she was just getting started! She went on to teach sign language at various places around Vero Beach and at her high school, too. Patricia has always talked and written about being independent. Since high school she has been very busy teaching sign language classes and, up until now, she has lived at home with my Mom and Dad. This August Patricia will really, truly, be independent! She is 1 of 6 students to be accepted to attend the University of Central Florida in Orlando! She will live in the dorm, attend 2 classes, have a job on campus and participate fully in campus life! Sounds like a pretty normal life of a successful young person right? My little sister, Patricia, happens to have Down syndrome! How’s that for destroying stereotypes!
Patricia exhibiting an “I CAN” attitude Photo courteousy O’Hara McKenna
Go Knights! Y
~very, very proud big sister! Dr. O’Hara McKenna
Share a Proud Moment with us Next Issue! Proud Moments can be any time that you have been extremely proud of your child with special needs. It can be when they are giving it their all or reaching a milestone. submit@parentingspecialneeds.org
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JUL/AUG 2015
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