Autism Parenting Magazine

Autism Parenting Issue 57 Magazine SIMPLE WAYS TO PREVENT EMERGENCY SITUATIONS 6 AWAR WITH AUTISM 01 D 2 S Autism HELPING YOUR Parenting CHILD WITH MAGAZINE 2016 Contributor ASD HANDLE Awards Announced DISAPPOINTMENT

8 IMPORTANT IEP DECREES THE SCHOOL OWES YOU NOW!

THE URGENT NEED TO STOP CRIMINALIZING AUTISM CONQUERING A NEW YEAR How to use this app?

Tap & Hold the screen to show the top bar HOME Tap to return to the app home page

Swipe Horizontally to go to the next page

Tap & Hold the screen to show the bottom bar Swipe Horizontally to quickly navigate pages Tap selected page to View Editor’s Letter very new year, in good faith, I make a long list of mental resolutions. After much reflection, I pro- duce an impressive collection of mostly unrea- chable goals. January starts off well, and then, lo and behold, life gets in the way. It isn’t long before my best intentions have evolved into a long list of letdowns. ENow, people have warned me of the dangers of setting unrealistic and unachievable goals. Instead of being a tool for motivation, these kinds of resolutions rapidly evolve into enor- mous stressors. I have to ask myself, is this really healthy? So this time I am adopting a new perspective. Please join me in taking a little bit of a different approach toward 2017. Instead of setting specific goals, what if we committed to making broader changes in strengthening our As you devise ways to care for your family in the new year, lives? Let’s conquer the future by better caring for ourselves please don’t forget to care for someone equally important– as parents, by celebrating our families more, and spreading yourself. Take a look at Chris Nealy’s piece, The Critical Need autism awareness and compassion in our communities. Let’s for Self-Care: The Oxygen Mask Rule, as the co-owner of pledge to do better—for our families. Halcyon Mental Health provides excellent advice for parents on simple ways to embrace self-care. And because reducing The more we talked to doctors, autism experts, child advo- tension is so vital to health, we also present the advice of pe- cates, and parents in search of advice for the new year, the diatric-adult occupational therapy provider Kendra Garcia. more excited we became about spreading this message. This Be sure to read Autism Mom’s Self Care: 6 Quick Ways To is definitely an issue you won’t want to miss. Reduce Stress and Gain Clarity as Kendra reveals six simple One way we can improve our lives is to educate ourselves as tips that helped her life as an autism mom. parents. Please take a look at the article, The Time is NOW: As I have mentioned over the years, one of the most reward- Family Emergency Preparedness with Special Needs, as Sue ing aspects of acting as Editor-in-Chief of Autism Parenting Wolf-Fordham, director of the Emergency Preparedness Initia- Magazine has been connecting with our readers as they share tive at UMass Medical School’s Eunice Kennedy Shriver Center, their concerns as well as their dreams. We recently received a shares the value of emergency planning. Her piece will certain- letter from a reader whose young son with autism was need- ly make you think twice about being vigilant and equipped for lessly victimized because a substitute teacher failed to rec- the future. We also are happy to share Joyce Benjamin’s piece, ognize his sensory issues. The mother’s concern was real, as Easy Ways to Prevent Emergency Situations with Autism as so many children with special needs face similar challenges the Registered Nurse highlights potential urgent situations, every day in the classroom. In an effort to provide top ad- along with tips on ways to handle them. vice, we reached out to Areva Martin, a leading attorney and autism and children’s rights advocate. Please take a look at Being prepared also includes staying on top of your child’s her piece, The Urgent Need to Stop Criminalizing Autism, education. Be sure to read Debbie Gelinas’ article called 8 as Areva responds to the concern in addition to sharing her Important IEP Decrees the School Owes You Now. As the view on the vast need for the education and training of po- founder of IEP Coaching & Advocacy, Debbie has provided lice officers, prosecutors, judges, and correctional officials. key points you need to know in order to successfully advocate for your child with autism and ensure he/she receives In addition to the latest news and professional guidance for you and your child, we are immensely proud to highlight our the quality education deserved; her information is vital. top contributors for 2016. Autism Parenting Magazine has Another important topic includes finding ways to make out- grown enormously over the years, and we know that has been ings easier for the whole family—especially when it comes made possible through the commitment of hundreds of ded- to attending church services. The reality is, according to oc- icated physicians, scientists, educators, families, and our writ- cupational therapist Cara Koscinski, parents of children with ers who are on the spectrum. Together, we make a difference. special needs often do not attend church regularly out of So let’s forge ahead into the new year, working fearlessly to fear of being judged by others. Her piece, Ways to Include conquer the future. Wishing you the love and support you Your ASD Child When You Head to Church, will help you pre- need as you strengthen your family and life. pare your child with autism as well as your church family for inclusive worship. There are useful tips for everyone, from Kind regards, creating a special ‘church box’ and selecting a ‘church buddy’ Amy KD Tobik to finding ways to educate the congregation on autism. Editor-in-Chief

Disclaimer: Autism Parenting Magazine tries its best to deliver honest, unbiased reviews, resources, and advice, but please note that due to the variety of capabilities of people on the spectrum, these are recommendations and not guaranteed by Autism Parenting Magazine or its writers. Medical information, including but not limited to, text, graphics, images and other material contained within Autism Parenting Magazine is for informational purposes only. Always seek the advice of your physician with any questions you may have regarding treatment. Table of contents 6 LET'S HEAR IT FOR THIS YEAR'S SPECIAL 22 THE URGENT NEED FOR SELF-CARE: THE OXYGEN CONTRIBUTORS MASK RULE A special recognition for our Top 15 Contributors Excellent advice for parents on ways to embrace self- for 2016 who have helped make Autism Parenting care from a therapist who provides direct support to Magazine an award-winning magazine. individuals affected by ASD. Amy KD Tobik Chris Nealy, MSW, LCSW 25 8 SIMPLE WAYS TO COMBAT SOCIAL TIME STRESS 12 THE URGENT NEED TO STOP CRIMINALIZING The mother of a young boy with autism shares her AUTISM tips for creating successful opportunities at social A leading attorney and autism/children’s rights gatherings. advocate shares the vast need for the education and Tulika Prasad training on autism of police officers, prosecutors, judges and correctional officials. Areva Martin, Esq.

14 A LOVING MOTHER REFLECTS: BRINGING UP THE BOY A mother tenderly looks back at her son's amazing journey with autism. Sarah Linsdale

29 AUTISM MOM'S SELF CARE: 6 QUICK WAYS TO REDUCE STRESS AND GAIN CLARITY A Certified Occupational Therapy Assistant reveals six simple tips that helped her life as an autism mom. Kendra Garcia, COTA/L

32 WAYS TO ACHIEVE TELE-CONFERENCE COURSE 17 THE TIME IS NOW - FAMILY EMERGENCY SUCCESS WITH SPECIAL ABILITIES PREPAREDNESS WITH SPECIAL NEEDS A mother of a young man on the spectrum shares her The director of the Emergency Preparedness tips for maximizing the tele-conference course experi- Initiative at UMass Medical School’s Eunice Kennedy ence for students with autism. Shriver Center shares the value of emergency planning when you care for someone with special Robbin May needs. Sue Wolf-Fordham 35 THE REMARKABLE DAY DAPHNE MET THE 'DOCTOR' A mother describes the positive impact the Doctor 20 A MEANINGFUL DAY AT THE SALON Who franchise has had on her young daughter with A mom beautifully describes what makes her daugh- autism. ter with autism special. Jackie Nelson Darbi Johnson 38 SIMPLE WAYS TO PREVENT EMERGENCY SITUATIONS WITH AUTISM Simple tips on ways to avert emergency situations when caring for someone on the autism spectrum. Joyce Benjamin, RN, PA

4 | Autism Parenting Magazine | Issue 57 42 3 AMAZING WAYS PARENTS OF ASD TEENS CAN 60 NEW BOOK SHARES WAYS TO BEGIN THE NEW BENEFIT FROM A LIFE COACH YEAR WITH A FRESH START A certified professional coach shares ways the whole Take a look at the book High-Functioning Autism and family benefits when parents are coached while raising Difficult Moments: Practical Solutions for Reducing teens with autism. Meltdowns as authors Brenda Smith Myles, PhD and Sharona Sommer, CPC Ruth Aspy, PhD share strategies for minimizing the sometimes-frightening circumstances surrounding meltdowns. 44 AMAZING PUPPET MAKER CHANGES BOY WITH AUTISM'S WORLD Learn about a Mexican puppet maker who made a 61 THE AWESOME REWARDS OF TEACHING JAMES meaningful connection to a child with autism through A lifelong artist and art educator shares the continuous his special, handmade dolls. rewards of working with a dynamic young man who is Geri Anderson and Marcus Wilkinson, photographer on the spectrum. and translator Lauren Rader

46 HOW TO USE PERIPHERAL VISION TO ENGAGE 65 HOT OFF THE PRESS! YOUR CHILD WITH AUTISM NEW STUDY HIGHLIGHTS THE IMPORTANCE Discover simple ways to better connect with your child OF FATHERS IN THE CARE OF CHILDREN WITH using his/her peripheral vision. AUTISM Maria Rohan, RN, BSN Interesting research regarding the role fathers play in the lives of children with autism according to a study performed by Leeds Beckett University. 49 8 IMPORTANT IEP DECREES THE SCHOOL OWES YOU NOW! Use these key points to help advocate for your child 67 EASY WAYS TO HELP YOUR CHILD WITH ASD with autism and ensure he/she receives the quality HANDLE DISAPPOINTMENT education deserved. Great professional advice on ways you can set your Debbie Gelinas child with autism up for success by teaching him or her how to cope with disappointment. Sarah Kupferschmidt, MA, BCBA

69 IS THE ABLE ACCOUNT THE RIGHT SAVINGS TOOL FOR MY CHILD WITH SPECIAL NEEDS? Expert advice regarding the pros and cons of opening an ABLE Account in an effort to provide long-term support for your child. Ryan F. Platt, MBA, ChFC, ChSNC

71 WARM CHICKEN AND BACON SALAD WITH HONEY AND MUSTARD DRESSING This warm salad is not only delicious but a healthy choice. Autism Food Club 52 WAYS TO INCLUDE YOUR ASD CHILD WHEN YOU HEAD TO CHURCH Excellent tips on how to prepare your child with autism and your church family for worship. Cara Koscinski, MOT, OTR/L

56 WAYS SERVING ON THE BOARD OF ANDERSON CENTER FOR AUTISM HAS CHANGED MY LIFE FOREVER The Chair of the Anderson Center for Autism Board describes the rewards of serving a nonprofit and encour- ages people from all walks of life to become involved. Eric Gorman

Disclaimer: Please note that the advertised business and products are not endorsed or guaranteed by Autism Parenting Magazine or any of its employees.

Autism Parenting Magazine | Issue 57 | 5 AUTISM NEWS Let’s Hear It For This Year’s Special Contributors 2016 Autism Parenting Magazine Awards By Amy KD TOBIK

It’s that time of year—time to celebrate our amazing contributors who have helped make Autism Parenting Magazine an award-winning magazine. We’re proud to provide the most up-to-date information each month to our readers on autism health, safety, therapy, education, finance, social skills, and employment options.

e have a remarkable group of contribu- Selecting 15 people to honor out of hundreds of valu- tors: dedicated physicians, scientists, ad- able contributors this year was quite a challenge. Re- vocates, educators, writers, artists, young ally, everyone deserves a hearty round of applause. people, and families, some of whom are This year we are also recognizing the top two articles on the spectrum. Together we form an with the most social media shares for 2016. The fol- W exceptional and supportive community lowing contributors have been handpicked for spe- of knowledge and understanding. cial recognition:

2016 TOP CONTRIBUTOR AWARDS

6 AwAr Good Morning6 AwA Americar and Dr.Phil, Areva is also a 01 d 01 d 2 s cohost2 on the Emmys Award-winning daytime syndicated talk show The Doctors. A Harvard Law School autism graduate,autism Areva is the founding partner of Martin & Parenting Parenting Magazine Martin, LLP.Magazine She represents clients in high-stakes civil Areva Martin, and disabilityDebra Moore, rights and employment litigation. She Esq. has been Ph.D.identified as a Southern California Super Top Autism Rights Writer: Top Autism Rights Writer Top Autism Solutions Writer Areva Martin, Esq. Lawyer for the last three years. Recognized as one of the nation’s leading autism and children’s rights advocates, she is the founder of Special Needs Net- Areva Martin is one of the nation’s leading6 AwAr voices 6 AwAr 01 d 01 d in the media. An attorney, legal 2and social issuess work, Inc.2 and the sauthor of an Amazon best-selling commentator, and talk show host, she is an audi- book, The Everyday Advocate: Standing Up for Your ence favorite on a long list of talka andutism news shows Child awithutism Autism and Other Special Needs (Penguin on CNN, ABC and Fox. With regular appearancesParenting on 2010). Parenting Magazine Magazine Angelina M., MS, Tracy Oxley BCBA, LMFT Top Special Education Advice Writer 6 | Autism Parenting Magazine | IssueTop Assessment 57 and Treatment Writer

6 AwAr 6 AwAr 01 d 01 d 2 s 2 s autism autism Parenting Parenting Magazine Magazine Sarah Kupferschmidt, Barbara Sher MA, BCBA MA,OTR Top Behavior Analysis Writer Top Occupational Therapist Writer 6 AwAr 6 AwAr 01 d 01 d 2 s 2 s autism autism Parenting Parenting Magazine Magazine Areva Martin, Debra Moore, Esq. Ph.D. AUTISM NEWSTop Autism Rights Writer Top Autism Solutions Writer

w w 16 A Ar 16 A Ar 6 AwAr 6 AwAr 0 d 0 d 01 d 01 d 2 s 2 s 2 s 2 s autism autism autism autism Parenting Parenting Parenting Parenting Magazine Magazine Magazine Magazine Areva Martin, Debra Moore, Angelina M., MS, Esq. Ph.D. Tracy Oxley BCBA, LMFT Top Special Education Advice Writer Top AutismTop Autism Solutions Rights Writer Writer: Top Autism Solutions Writer Top Assessment and Treatment Writer Debra Moore, Ph.D. w w Top Assessment and 16 A Ar 16 A Ar 6 AwAr 6 AwAr 0 d 0 d Debra Moore01 is a psychologistd who 0has1 workedd ex- Treatment Writer: 2 s 2 s 2 s 2 s Angelina M., MS, BCBA, LMFT tensively with children, teens and adults on the au- 6 AwAr 6 AwAr 01 d 01 d tism spectrum. She coauthored The Loving Push: How 2 s a2utisms autism autism autism Angelina M. works as a Board CertifiedParenting Behavior An- Parenting Parents andParenting Professionals Can Help ParentingSpectrum Kids Magazine Magazine Become Successful Magazine Adults (2016) withMagazine Dr. Temple alyst, specializing in assessingSarah and treating Kupferschmidt, children Barbara Sher Angelina M., MS, autism autism Grandin. She started the groups “AutismTracy OxleySpectrum and adolescentsParenting with autism, down-syndrome,MA,Parenting BCBA and MA,OTR BCBA, LMFT Top Special Education Advice Writer Magazine Top BehaviorMagazine Analysis Writer Top Occupational Therapist Writer Top Assessment and Treatment Writer other developmental delays. She began her career Across the Lifespan,” and “Autism Spectrum HELP- Areva Martin, Debra Moore, ING HANDS Mentors” at https://www.linkedin.com/ in Applied Esq.Behavior Analysis in 2006,Ph.D. following her Top Autism Rights Writer Top Autism Solutions Writer 6 AwAr 6 AwAr youngest brother’s autism diagnosis, and has since groups/164696701 . Shed contributed two01 chaptersd (one again coauthored2 withs Dr. Temple 2Grandin) to s The worked with dozens of children and families. She 6 AwAr 6 AwAr also writes a blog about her experiences as both a Nine Degrees01 of Autismd (Routledge, 2015),01 whichd pres- 2 s 2 s 6 AwAr 6 AwAr ents a adevelopmentalutism model of stagesautism frequently professional01 and ad big sister. Her brother,01 Dylan,d re- Parenting Parenting mains her2 most powerfuls inspiration2 for helpings oth- experiencedautismMagazine by those diagnosed aas utismadults.Magazine She also wroteSarah theParenting Kupferschmidt,chapter Internet and GamingBarbaraParenting Addiction Sher in ers whoa utismface similar challenges. aLearnutism more about MagazineMA, BCBA MagazineMA,OTR Angelina and her blog, The Autism Onion, at www. Youth onTop the Behavior Autism Analysis Writer Spectrum: A ParticularlyTop Occupational Therapist Vulner Writer - Parenting Parenting able Population Areva Martin,in Internet AddictionDebra in Children Moore, and theautismonion.comMagazine or www.facebook.com/theauMagazine - Esq. Ph.D. Angelina M., MS, Adolescents Top Autism(forthcoming, Rights Writer SpringerTop Publishers). Autism Solutions Writer tismonion Tracy Oxley BCBA, LMFT Top Special Education Advice Writer Top Assessment and Treatment Writer

Aw Aw 16 Ar 16 Ar 6 AwAr 6 AwAr 0 d 0 d 01 d 01 d 2 s 2 s 2 s 2 s autism autism autism autism Parenting Parenting Parenting Parenting Magazine Magazine Magazine Magazine Angelina M., MS, Tracy Oxley Sarah Kupferschmidt, Barbara Sher BCBA, LMFT Top Special Education Advice Writer MA, BCBA MA,OTR Top TopSpecial Assessment and Education Treatment Writer Top Behavior Analysis Writer Top Occupational Therapist Writer Advice Writer: Top Occupational Tracy Oxley Therapist Writer: 6 AwAr 6 AwAr 01 d 01 d Barbara Sher MA, OTR 2 s 2 s Tracy aOxleyutism is an exceptional studentautism education (ESE) Barbara Sher is the author of 11 books on playing middle schoolParenting teacher at Johnson MiddleParenting School in games. Her latest books, Everyday Games for Sensory Melbourne,Magazine Florida. She is the 2016-17Magazine Teacher of the Processing Disorder, Early Intervention and The Whole YearSarah for JohnsonKupferschmidt, Middle School. SheBarbara has a SherBachelor’s MA, BCBA MA,OTR Spectrum of Social, Motor and Sensory Games em- DegreeTop inBehavior Exceptional Analysis Writer Education Topfrom Occupational the Therapist University Writer phasize playful activities to do with siblings at home of Central Florida and a Master’s Degree in Exception- and in inclusive classroom using recycled materials. al Education with a certificate in Autism Spectrum Check out online bookstores or www.gameslady. Disorders from the University of Central Florida. She com for details and to hear Playful Parent podcasts is married with six children ranging from ages 3 to 27 and has a rescue dog named Julie. She is an avid sports fan and loves spending time with her family.

Autism Parenting Magazine | Issue 57 | 7 6 AwAr 6 AwAr 01 d 01 d 2 s 2 s autism autism Parenting Parenting Magazine Magazine Areva Martin, Debra Moore, Esq. Ph.D. Top Autism Rights Writer Top Autism Solutions Writer

6 AwAr 6 AwAr 01 d 01 d 2 s 2 s autism autism Parenting Parenting Magazine Magazine Angelina M., MS, Tracy Oxley BCBA, LMFT Top Special Education Advice Writer AUTISM NEWS Top Assessment and Treatment Writer

6 AwAr 6 AwAr 01 d passionate01 aboutd empowering others with the most 2 s 2 s effective tools to teach children with autism. She autism has beenautism training staff and clinicians and coaching Parenting parents onParenting how to do this since she started. She is Magazine also passionateMagazine about the science and research be- Sarah Kupferschmidt, Barbara Sher MA, BCBA hind theMA,OTR tools that she advocates. In partnership Top Behavior Analysis Writer with BrockTop Occupational University, Therapist Writer Sarah is currently involved in Top Behavior Analysis Writer: a research project that involves the evaluation of a Sarah Kupferschmidt, MA, BCBA parent-training package that will help empower parents with tools to teach a child with autism important Sarah Kupferschmidt realized that Behavior Analysis safety skills. She has been a Part-Time or Adjunct Pro- was her calling when she first started working with fessor since 2005, teaching ABA courses. Sarah also children with autism in 1999. Once she discovered its regularly presents workshops to parents, therapists, effectiveness and the impact it had in helping chil- and educators on a variety of topics related to teach- dren with autism and their families, it inspired her to ing or working with individuals with autism. Sarah pursue a Masters of Arts in Psychology with a spe- is a Huffington Post Contributor, a TEDx speaker, and cialization in Behavior Analysis from the University was named Top Safety Contributor for Autism Par- of Nevada, Reno. She is also a Board Certified Behav- enting Magazine in 2014 and Top Behavior Analysis ior Analyst (BCBA). Not only does Sarah enjoy work- Writer for 2015. Visit her site: sarahkconsulting.com ing directly with children with autism, she’s also very

6 AwAr 6 AwAr 01 d lishers, and01 is the author ofd The Kids’ Guide to Staying 2 s 2 s Awesome and in Control: Simple Stuff to Help Children autism Regulatea utismTheir Emotions and Senses (July 2014), and Parenting How to BeParenting a Superhero Called Self-Control!: Super Pow- Magazine ers to Help YoungerMagazine Children to Regulate their Emotions Lauren Brukner, Karen Kabaki-Sisto, OT and SensesM.S., CCC-SLP(November 2015). She holds advanced Top Parental Advice Writer trainingTop andCommunications certification Writer in Integrated Listening Top Parental Advice Writer: Systems and is a Certified Screener for Irlen Syn- Lauren Brukner, OT drome/Scoptic Sensitivity. She is a contributing au- 6 AwAr 6 AwAr 01 d thor to Autism01 Parentingd Magazine and Fireflyfriends Lauren Brukner is a Senior Occupational2 Therapists Special Needs2 blog.s She has appeared as a guest on and author who graduated with a Mastersautism of Science The Autismautism Show and The Manhattan Neighborhood in Occupational Therapy from New YorkParenting University. Network’sParenting School-Home Connection. Her books have She is a mom of three kids, ages 5, 7, and Magazine8. She spe- been listedMagazine as resources on websites such as Real Ryan F. Platt, MBA, cializes in sensory integration and self-regulation® Simple MagazineKate Hooven, Everyday Health, AOL’s Health and ChFC , ChSNC™ Top Personal Narrative Writer strategies in children and young people,Top Special Needs and Financial their Writer Wellness, MSN Health, and Friendship Circle, as well as implementation in home, school, and community Special Needs Book Review, among others. She blogs settings. She is an author with Jessica Kingsley6 AwAr Pub- at www.awesomeandincontrol.com6 AwAr . 01 d 01 d 2 s 2 s 6 AwAr 6 AwAr years. As a certified Speech-Language Pathologist 01 d 01 d 2 s a2 utisms autism Parenting and AppliedParenting Behavior Analysis Instructor, Karen has Magazine been empoweringMagazine people with autism and special autism Jamieautism E. Carter, Ahna I. Parenting ParentingPh.D. needsO’Shaughnessy, to have more M.A. meaningful conversations like Magazine Top SocialMagazine Skills Advisers never before.Top Social Skills Her Advisers highly effective “I CAN! For Autism Lauren Brukner, Karen Kabaki-Sisto, OT M.S., CCC-SLP Method™”—perfected for over 10 years and now in- Top Parental Advice Writer Top Communications Writer Top Communications Writer: corporated within the iPad app I Can Have Conversa- Karen Kabaki-Sisto, M.S., CCC-SLP tions With You!™–is changing lives through improved social and language skills. It is 100% fun for both kids 6 AwAr 6 AwAr 01 d 01 d Karen Kabaki-Sisto2 is as Communication2 Expert ands and adults to use! Join the conversation at www. Advocate ahelpingutism people with autismautism for over 20 iCanForAutism.com. 8 | Autism ParentingParenting Magazine | Issue 57 Parenting Magazine Magazine Ryan F. Platt, MBA, ® Kate Hooven ChFC , ChSNC™ Top Personal Narrative Writer Top Special Needs Financial Writer

6 AwAr 6 AwAr 01 d 01 d 2 s 2 s autism autism Parenting Parenting Magazine Magazine Jamie E. Carter, Ahna I. Ph.D. O’Shaughnessy, M.A. Top Social Skills Advisers Top Social Skills Advisers 6 AwAr 6 Aw6 AArwAr 6 AwAr 01 d 01 01 d d 01 d 2 s 2 2 s s 2 s autism autismautism autism Parenting ParentingParenting Parenting Magazine MagazineMagazine Magazine Lauren Brukner, KarenLauren Kabaki-Sisto, Brukner, Karen Kabaki-Sisto, OT M.S., CCC-SLPOT M.S., CCC-SLP Top Parental Advice Writer Top CommunicationsTop Parental Writer Advice Writer AUTISM NEWSTop Communications Writer

6 AwAr 6 Aw6 AArwAr 6 AwAr 01 d 01 01 d d 01 d 2 s 2 2 s s 2 s autism autismautism autism Parenting ParentingParenting Parenting Magazine MagazineMagazine Magazine Ryan F. Platt, MBA, Ryan F. Platt, MBA, ® Kate Hooven® Kate Hooven ChFC , ChSNC™ Top PersonalChFC Narrative, ChSNC™ Writer Top Personal Narrative Writer Top Special Needs Financial Writer Top Special Needs Financial Writer 6 Aw6 ArwAr 6 Aw6 ArwAr Top Special Needs Financial Writer: Top Personal01 01 Narratived d Writer:0 1 01 d d 6 AwAr 2 2 6 Aw6 AArswAsr 2 2 6 AswAsr Ryan F. Platt, MBA, ChFC®, ChSNC™ 01 d Kate Hooven01 01 d d 01 d 2 s autisma2 utism2 s s autismautism2 s Ryan F. Platt completed his Special aCareutism Planner Cer- Kate aHoovenParentingutismaParentingutism is a mom of threeParenting fabulousaParentingutism kids, and tification in 2005 at the American ParentingCollege in Bryn she sharesMagazineParentingMagazine howParenting her family rides theMagazine wavesMagazineParenting of autism Mawr, PA, in which he received advancedMagazine training in withoutLaurenLauren drowning MagazineBrukner, MagazineBrukner, at The AWEnestyKarenKaren Kabaki-Sisto, Kabaki-Sisto, ofMagazine Autism . The Jamie E. Carter, OTJamieOT E. Carter, M.S.,M.S., CCC-SLP CCC-SLP estate and tax planning, special needs trusts, gov- blogTop is Parental real,TopAhna Parental Advice raw, WriterAdvice I. Writerand AWEnest. TopKate CommunicationsTop Communications hopesAhna Writer inWriter I. the few Ph.D. O’Shaughnessy,Ph.D. M.A. O’Shaughnessy, M.A. ernment programs, and the emotionalTop Social dynamics Skills Advisers of minutesTop Socialit Toptakes Skills Social Advisers Skills a Advisersparent riding a similarTop Social wave Skills Advisers to read working with people and families with special needs one of her posts, that parent feels a little less lonely 6 Aw6 ArwAr 6 Aw6 ArwAr loved ones. In 2013, he went on to complete the and little01 0 1mored determinedd to hold01 01 on andd dride the Chartered Special Needs Consultant designation. A wave.2 She2 has beens s blogging for2 three2 yearss ands has pioneer in his field, Ryan is one of only a few plan- hada severalutismautism posts shared on aTheutisma Mightyutism, Yahoo Par- ners certified through Massachusetts Mutual Life In- entingParenting, AutismAwareness.comParenting , TheParenting ParentingAutism Society of surance Company (MassMutual) and the American AmericaMagazine andMagazine Autism Speaks. MagazineMagazine RyanRyan F. Platt, F. Platt, MBA, MBA, College in Special Care Planning in Charlotte. He is ® ® KateKate Hooven Hooven ChFCChFC, ChSNC™, ChSNC™ Top PersonalTop Personal Narrative Narrative Writer Writer the founder of A Special Needs Plan. Top SpecialTop SpecialNeeds Financial Needs Financial Writer Writer

6 Aw6 ArwAr 6 Aw6 ArwAr 01 01 d d 01 01 d d 2 2 s s 2 2 s s autismautism autismautism ParentingParenting ParentingParenting MagazineMagazine MagazineMagazine JamieJamie E. Carter, E. Carter, AhnaAhna I. I. Ph.D.Ph.D. O’Shaughnessy,O’Shaughnessy, M.A. M.A. Top SocialTop Skills Social Advisers Skills Advisers Top SocialTop Skills Social Advisers Skills Advisers Top Social Skills Advisers: manual which provides an easy to follow four-step Jamie E. Carter, Ph.D. and program to help your child improve social func- Ahna I. O’Shaughnessy, M.A. tioning and emotion management. It is available exclusively through Amazon Kindle at http://www. Jamie E. Carter is a clinical psychologist and Ahna amazon.com/gp/product/B00WQANRI4. You can I. O’Shaughnessy is a psychology associate. They follow them on Twitter @Prep4SocSuccess and on are co-authors of PREP for Social Success: A Guide Facebook at https://www.facebook.com/PREPfor- for Parents of Children with Autism. It is a social skills SocialSuccess.

6 AwAr 6 AwArth 01 d entering01 into 9 d grade in the fall. His parents knew 2 s there 2was somethings different about Nick when he autism was alittle,utism but he was not diagnosed with autism un- Parenting til he wasParenting seven years old. Nick plays hockey, soccer, Magazine and is learningMagazine to play tennis. He volunteers all over Nick Turziano town,Kaelynn gets goodPartlow grades, has a summer job, and has Top Young Adult Writer Top Autism Voice Top Young Adult Writer: been able to make a difference in the autistic com- Nick Turziano munity. Nick says his greatest accomplishment is earning the rank of Eagle Scout at only 14 years old. 6 AwAr 6 AwAr Nick Turziano is a 14-year-old boy who01 happensd to 01 d have autism. He is from Wheeling,2 WV and wills be 2 s autism autismAutism Parenting Magazine | Issue 57 | 9 Parenting Parenting Magazine Magazine Dr. Neill Colin Rhodes, Broderick M.Sc. Top Expert Advice Writer Top Expert Advice Writer

6 AwAr 01 d 2 s autism Parenting Magazine Joseph Pangaro Top Safety Writer 6 A6w AAwr Ar 6 A6w AAwr Ar 01 01 d d 01 01 d d 2 2 s s 2 2 s s autismautism autismautism ParentingParenting ParentingParenting MagazineMagazine MagazineMagazine NickNick Turziano Turziano KaelynnKaelynn Partlow Partlow Top YoungTop AdultYoung Writer Adult Writer Top AutismTop Autism Voice Voice AUTISM NEWS

6 A6w AAwr Ar 6 A6w AAwr Ar 01 01 d d 01 01 d d 2 2 s s 2 2 s s autismautism autismautism ParentingParenting ParentingParenting MagazineMagazine MagazineMagazine Dr. Dr.Neill Neill ColinColin Rhodes, Rhodes, 6 AwAr 6 AwAr BroderickBroderick M.Sc.01M.Sc. d 01 d Top ExpertTop ExpertAdvice AdviceWriter Writer Top Expert2Top ExpertAdvice AdviceWriter Writer s 2 s Top Expert Advice Writer: Krieger Institute of Johns Hopkins University Medical 6 A6w AAwr Ar autism autism Dr. Neill Broderick and School0 1before01 returningd d to VanderbiltParenting University for Parenting 2 2 s s Colin Rhodes, M.Sc. a postdoctoral fellowship. She worksMagazine with children Magazine with autism spectrum disorders andNick their Turziano families in Kaelynn Partlow autismautism Top Young Adult Writer Top Autism Voice Neill Broderick is a licensed clinical psychologist em- assessment,ParentingParenting intervention, and research capacities. ployed by the Department of Pediatrics at the Vander- MagazineMagazine bilt Children’s Hospital and the Vanderbilt Kennedy ColinJoseph RhodesJoseph Pangaro Pangarois an experienced healthcare IT execu- Top SafetyTop SafetyWriter Writer 6 AwAr 6 AwAr tive with sixteen years’ experience working01 ind medi- 01 d Center. Prior to her faculty appointment at Vander- 2 s 2 s bilt, Dr. Broderick completed a Bachelor’s degree and cal imaging and clinical trials. Colin holds a bachelor’s a Master’s of Education degree at Vanderbilt Universi- degree with honors in Pure Mathematicsautism and Com- autism ty. She then pursued her doctoral degree in Clinical & puter Science as well as a Master’s degreeParenting in Com- Parenting puter Science from the University of Queensland.Magazine He Magazine School Psychology at the University of Virginia. Neill Dr. Neill Colin Rhodes, completed a predoctoral internship at the Kennedy has an eight-year-old son with ASD. Broderick M.Sc. Top Expert Advice Writer Top Expert Advice Writer

Aw 6 AwAr 6 AwAr 16 Ar 01 d 01 d 0 d 2 s 2 s 2 s autism autism autism Parenting Parenting Parenting Magazine Magazine Magazine Nick Turziano Kaelynn Partlow Joseph Pangaro Top Young Adult Writer Top Autism Voice Top Safety Writer Top Autism Voice: Kaelynn Partlow Top Safety Writer: 6 AwAr 6 AwAr 01 d 01 d Lieutenant Joseph Pangaro (Ret.) Kaelynn Partlow2 is a syoung adult with2 autism swho has a passionautism for advocacy. She has a highutism level of en- Joseph Pangaro is a 27-year veteran of law enforce- ergy and alwaysParenting needs to be busy. SheParenting enjoys spend- ment. He retired in 2013 at the rank of Lieutenant and ing time withMagazine her family and boyfriendMagazine while she is currently serves as the Director of School Safety and Dr. Neill Colin Rhodes, not workingBroderick with kids. On the side, KaelynnM.Sc. also has Security for a large school district in NJ. He is also the a small dogTop Experttraining Advice Writer business, in whichTop Expert she Advice Writerteaches owner of Pangaro Training and Management, a com- people with disabilities how to train their own ser- pany that provides training to the public and private vice dogs. She6 AhadwA ran internship with a service dog sector on a host of topics. Joseph is also a staff writer 01 d organization2 for severals years before branching out for the magazine NJ Blue Now. and teachingautism people how to train their own dogs. Parenting Magazine ContributedJoseph Articles Pangaro with the Top Media Shares for 2016 Top Safety Writer The following two contributor articles received the highest number of shares for the past year. Simple Ways to Help Your Child with Autism Learn 5 Ways to Deal When You Don’t Want to Talk About Flexible Thinking Your Loved One’s Disability By Kari Dunn Buron By Elizabeth Alterman

10 | Autism Parenting Magazine | Issue 57

AUTISM ADVOCACY The Urgent NEED TO STOP Criminalizing Autism By Areva MARTIN, Esq.

Behavioral experts say one of the key tenets teachers should know when dealing with a child on the autism spectrum is to not take that child’s seemingly rude or ag- gressive behavior personally. Just as with any child, they say, various circumstances can trigger children with special needs to express enjoyment, anger, sadness, or any other human emotion.

s the parent of a child with the school’s principal call police. Al- special needs, I’m acu- though the police didn’t arrest tely aware of how the boy, they did inform Raja important it is to they were keeping his son’s have members name in police records, of teaching but if fault is to be found and law enfor- anywhere, it should be cementA communities with the school, and trained to recognize not with an innocent the emotional ways in child. which children with autism might behave, and Since Raja’s son’s sen- for them to understand sory issues were well what may be the causes known by the scho- of these behaviors. Far ol’s staff, they shouldn’t too often, autistic beha- have hired a substitute vior is misinterpreted as cri- teacher who was clearly minal activity, and as a result, lacking the training and ex- inappropriately punished. perience necessary to interact with children on the autism spec- Case in point: I recently heard from a pa- trum. Also, the child’s regular home- rent named Raja whose third grader was needlessly room teacher, who presumably was aware of the victimized because a substitute teacher failed to re- child’s behavioral triggers, should have informed the cognize his son’s sensory issues. Specifically, when substitute teacher in advance about them. Since this Raja’s son sees a zipper, he has the urge to tug on was not done at the outset, the boy’s regular teacher it. Unfortunately, when Raja’s son was on his way and the school’s principal should have met with the to the classroom with a paraprofessional substitute substitute teacher after she lodged a complaint, and teacher, he pulled on her back zipper. Although the owned up to their mistakes. It was incumbent upon boy’s regular teacher disciplined him, the substitu- them to address this situation from the perspecti- te instructor was so upset she called her husband ve of protectors of the child, not as administrators to pick her up from school. When the husband ar- looking to shift the blame. By taking direct respon- rived, he exacerbated the problem by demanding sibility, they likely could have prevented the substi-

12 | Autism Parenting Magazine | Issue 57 AUTISM ADVOCACY tute teacher from contacting police, and avoided ded is comprehensive education and training of poli- the traumatization and victimization of an innocent ce officers, prosecutors, judges and correctional offi- child with special needs. Unfortunately, these types cials so they can distinguish between the calculated of mishaps and behavioral misdiagnoses are all too actions of criminals, and the unintended misdeeds common, often resulting in consequences far more of people on the autism spectrum. tragic. Law enforcement’s unfamiliarity with children and teens on the spectrum has led some to be impri- Areva Martin is one of the nation’s lead- soned. ing voices in the media. An attorney, le- Not too long ago, a teen in Maine was arrested for gal and social issues commentator, and sexual molestation after he pinched a young wo- talk show host, she is an audience favor- man’s bottom in school. A day earlier, he had witnes- ite on a long list of talk and news shows sed another boy do the same thing and the girl lau- on CNN, ABC and Fox. With regular appearances on ghed. A zero-tolerance school policy and the nuance Good Morning America and Dr.Phil, Areva is also of pinching a friend on the bottom was lost on him. a co-host on the Emmy Award-winning daytime Unfortunately, it was also lost on law enforcement, syndicated talk show The Doctors. A Harvard Law which considered it forcible touching. School graduate, Areva is the founding partner of Martin & Martin, LLP. She represents clients in high- In Illinois, a 19-year-old was arrested by police in 2010 stakes civil and disability rights and employment as a possible pedophile for kissing a baby in a stroll- litigation. She has been identified as a Southern er. It was only a peck on the cheek, but the baby’s California Super Lawyer for the last three years. mother was terrified when an unknown tall young Recognized as one of the nation’s leading autism man kissed her baby. “I like babies,” the teen told and children’s rights advocates, she is the founder authorities. The boy did not understand it is OK to of Special Needs Network, Inc. and the author of an kiss babies he knew, but not the babies of strangers. Amazon best-selling book, The Everyday Advocate: Sadly, most police officers aren’t trained to recog- Standing Up for Your Child with Autism and Other nize the behavior they view as criminal may merely Special Needs. (Penguin 2010). be a result of a child’s autistic button being pushed. Complicating matters, many autistic individuals are unable to maintain eye contact, which they find in- timidating. When questioned by police, that inability is often considered evasive or deceptive. Once a person with autism is incarcerated, the pros- pect for proper care is virtually non-existent. The Where Vacations Come True... consequences of this reality are usually immediate Providing cruise vacation services to and devastating. Even high-functioning individuals accommodate families and individuals with Special Needs, including, but not with few triggers have meltdowns. Guards and pris- limited to, Autism, Asperger Syndrome, on officials who don’t understand autism often deal Down Syndrome, Tourette Syndrome, Cerebral Palsy and all Cognitive, with behavior they consider troublesome or rebel- Intellectual and Developmental Disabilities. Cruises are Staffed with lious through solitary confinement. special education and behavioral management professionals, providing respite and continuous assistance for families throughout their vacation. It is bad enough to imprison people whose misdeed is due to autism, but to place a special needs person in solitary confinement does not result in appropri- Autism on the Seas ate punishment because the offender never under- Cruises for Adults and Families living with Autism, stood the potential consequences of his or her ac- Down Syndrome and other related Disabilities tions. The confinement can destroy years of progress Sailing from Florida, New Jersey, New York, Texas and other ports in the United States because the offender does not understand why he or she is being punished. www.AutismontheSeas.com It’s beyond time to stop the cruel punishment and ® criminalization of people with autism. What’s nee- PERSONAL NARRATIVE Bringing up the Boy By Sarah LINSDALE

It was the roundabout I remember most. Every Saturday outside the shopping center there was a man sitting on a wooden chair turning a handle. It looked effortless, but it was joined to a series of cogs that drove a children’s roundabout.

here was a bus, a tractor, a car, and a motorbike back into his stroller and watched as his older sister on the roundabout, all brightly painted and so went round and round, her face a picture of joy, ‘driv- easy for children to climb. Both of my children ing’ the bus while he sat and waited. loved it. We went every week and each had two rides. Daniel didn’t talk very much. I took him for a hear- T ing test and was relieved to hear when children have One week we arrived as usual and saw a sign by the colds, their hearing can be affected for up to six roundabout: three rides for the price of two, so my weeks. That explained it. daughter very happily climbed back on for another go. He didn’t like listening either. But he seemed to be But not Daniel. He was adamant that he would not be getting a bit better as I was learning how to get his going on the roundabout again, not until next week attention. “He seems to be hearing better now,” I told when he would again have two rides. He climbed the doctor a few weeks later.

14 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE

“Hearing is not the same as listening,” she said in a  Opting out of social situations can be the easi- very patronizing tone. est way to cope. Daniel would disappear to his room when visitors arrived; we brought him It took me a very long while to face up to the painful downstairs, and he was rewarded for trying. truth, but in the end, I was forced to do this by Dan- iel’s nursery school teachers.  Specific roles and jobs can be easier in social settings. Daniel’s job was to hand the biscuits Later, a description of Daniel’s difficulties by an Edu- to guests. cational Psychologist confirmed my worst fears.  Children’s feelings, reluctance, and efforts “Daniel presents as a child with severe learning diffi- need to be acknowledged. Daniel hated hav- culties.” ing to do speech therapy tasks. We called it his talking homework, and it just had to be done. My greatest worry was for his future. What sort of life would he have? Would he ever be independent, Daniel still dislikes talking and finds it difficult to have a job, have relationships? express himself, but he is a good listener. Over the years we have shown him how to pretend he is This was all a long time ago. I didn’t know then that interested in what someone else is saying, even if Daniel would become independent, find work, and he is not. Everyone likes a good listener. have friends. I wish I had known that then. Many children cannot control their behavior–but some, He hasn’t perfected this skill by any means—who including Daniel, could. Although it was very, very has? Every now and again I have to take him aside difficult, we had to help him develop his communi- to remind him. cation and social skills. This is what we learned: He’s still learning. And so are we.  Children with ASD need to be rewarded for the effort they make. They might not be interest- Sarah Linsdale is a journalist who has had a success- ed in being liked or be able to make friends, so ful teaching career as well as being a mother to Dan- they need other rewards. iel and his sister. She worked for many years in secondary schools as a pastoral head where she taught  Rewards need to be immediate to be effec- adolescents with ASD. Her son, Daniel, is rarely at tive. Children do not understand time the way home because of his work and busy social life—a adults do—a sticker for a sticker chart works very different person to the little boy he once was. better than a promised treat the next day.

Autism Parenting Magazine | Issue 57 | 15

AUTISM SAFETY The Time is NOW: Family Emergency Preparedness with Special Needs

By Sue WOLF-FORDHAM

Parents are natural planners. As the parent of a child with a disability and a professional who assists communities and emergency planners with inclusive emergency plans, I know how much more critical emergency planning is for individuals with disabilities.

y daughter has Angelman syndrome, a This issue is important to the approximately 54 mil- rare condition that limits her indepen- lion Americans with disabilities and their families. At dence. I’m concerned for her safety in the Eunice Kennedy Shriver Center at UMass Medical an emergency—so my husband and School, my colleagues and I research and develop I have a plan. Our daughter’s many emergency planning solutions aimed at increasing medicines are in one place, we have a equal access to emergency services, enhancing regu- list of prescriptions, diagnoses, doctors’ latory compliance, and promoting efficient response. Mcontact information, and insurance; and we know how to contact our daughter’s adaptive equipment Too often, emergency plans don’t consider the needs and medical supply vendors. of children and adults with disabilities, and they ar-

Autism Parenting Magazine | Issue 57 | 17 AUTISM SAFETY

People with disabilities have experienced unclear emergency warnings, inaccessible shelters, lack of appropriate shelter services, and separation from vital supports such as service animals and adaptive equipment. en’t included in plan development. If a plan assumes 2. Do you have a quick “elevator story” about that everyone can walk, talk, follow directions and your child’s functional needs (without medical move quickly, many people with disabilities are left jargon) that you can tell to responders, neigh- out. People with disabilities have experienced un- bors, shelter personnel, or other helpers? Do clear emergency warnings, inaccessible shelters, lack you have more detailed information about of appropriate shelter services, and separation from your child’s needs readily available? vital supports such as service animals and adaptive 3. If your child is in school, do you ask about the equipment. While the U.S. has come a long way to- school’s emergency plans? Do you discuss your ward “whole community” inclusive emergency plan- child’s emergency needs at the yearly Individ- ning and response, it still has a way to go. ualized Education Plan (IEP) meeting? Are any My biggest worry is when disaster strikes, my hus- particular plans for your child incorporated band and I won’t be with our daughter; she’ll have to into the IEP? rely on a caregiver or first responder to help her. Sur- 4. Do you know where your local emergency veys and history indicate that while many caregivers shelter is and whether it is accessible? stay with their clients, and there are heartwarming stories from prior disasters to back this up, some will 5. Have you asked your child’s health care provid- not. I also worry that responders won’t understand er whether certain responder carries are safe? my daughter and may leave her behind. For example, some may develop breathing problems if they are carried over the shoulder So, we have had tough discussions with caregivers in the traditional firefighter’s carry. about their self-preparedness and about staying with Citizen involvement with local emergency planning our daughter until we arrive. I completed a form so is an important step toward community resilience, that dispatchers would be able to alert responders which will make it easier for a community to bounce about her needs, and I shared with our local EMS the back after disaster. If people with disabilities, fami- names of hospitals likely to understand her disability. lies, provider, and advocacy agencies participate in Many families of children with disabilities may not local emergency planning efforts, it means that dis- be well-prepared. When an online survey I conduct- ability-related emergency issues can be raised by ex- ed asked parents of children with disabilities about perts with live experience and local emergency plan- specific emergency planning steps they had taken, ners can respond accordingly. To me, that is a critical most had taken fewer than half the suggested num- matter of health equity. ber. Parents of children with disabilities should ask themselves these questions: Sue Wolf-Fordham, JD, is director of the Emergency Prepared- 1. Have you done advance “what if” thinking and ness Initiative at UMass Medical planning, a kind of personal risk assessment? School’s Eunice Kennedy Shriv- Here’s an example: What if your child uses a er Center. She has been working motorized wheelchair, and what if there is a since 2005 to train first responders, power outage and you can’t charge the wheel- public health planners, and communities to include chair? Do you have an extra battery? An addi- individuals with disabilities in emergency planning. tional source of power? A manual wheelchair?

18 | Autism Parenting Magazine | Issue 57

PERSONAL NARRATIVE A Meaningful Day at the Salon By Darbi JOHNSON

I’ll admit it started out as me needing a massage after the school carnival planning was finally over, but massages are expensive, and there isn’t an in-house babysitting Sign up to our email newsletter option—although wouldn’t that be great? A pedicure, however, offers a massage and receive FREE bonus content, chair and limeade for the mom while the child is occupied in an adjacent chair with video interviews on Autism wet polish on fingers and toes. Parenting, discounts on magazine issues and the latest ut now I have a newly-diagnosed child with What if she says a rude thing to me and I don’t han- Autism Information. autism, and while that diagnosis changes dle it the way other parents think I should? What if nothing, it also changes everything. her questions hurt other’s feelings? How do I act? Get Access Now What do I say? As my six-year-old daughter and I sat in our Privacy Policy: We hate SPAM and promise to keep Bchairs attempting to relax, I started to notice I wanted to tell the patient, funny, talented man your email address safe. ALL of the things in that tiny building she could speak painting her toes that she has an excuse! She’s not

loudly and socially inappropriately about. And she just a kid who has been parented imperfectly, she is Copyright 2015 © AutismParentingMagazine.com / All Rights Reserved would. Suddenly, I was terrified. also a child with autism! Should I get her a shirt? A tattoo? What should I do? What if she offends someone who doesn’t know her?

20 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE

I want to be more like her. I want to be as gentle and kind without fearing what others think. She is beauty and strength, and confidence and love, and joy and autism. She is my daughter.

She did say socially inappropriate things, but she to be, so, “How can I make an excuse for her?” is abso- was met with an understanding smile in return. She lutely the wrong question. did not laugh at his jokes and even told him, “I don’t She is beauty and strength, and confidence and like it when you joke like that,” but he was kind and love, and joy and autism. She is my daughter. I am did not run crying to the break room. She had loud SO DANG lucky. questions and I quietly answered them. I was not embarrassed. While our toes were painted, but still wet, I explained that we needed to sit still while they dry and then My daughter has many situations she will struggle looked at my phone. Suddenly I heard a giant sigh. with socially and our therapist even said she could I looked to her chair and she was sitting in it side- learn to perfect these skills so well that nobody will ways, feet sticking over the arm rest with cherry red be able to tell she has autism. Most people would toes, head leaning back on the other armrest. “Mom, say “That’s great!” But not me. I could really get used to this.” I want to be more like her. I want to be as gentle and So could I, kiddo. So could I. kind without fearing what others think. When there’s an elephant in the room, I want to dive straight into Darbi Johnson is a mother living in Portland, Oregon it with genuine questions instead of ignoring it un- with her husband, four children, two dogs, five chick- comfortably. I want to see the literal things in the ens and one duck. Her six-year-old daughter was re- world I so often look past and discuss them with my cently diagnosed with autism spectrum disorder. family. So many of the things in her are what I want

Sign up to our email newsletter and receive FREE bonus content, video interviews on Autism Parenting, discounts on magazine issues and the latest Autism Information.

Get Access Now

For anyone who has ever flown, the oxygen mask safety speech is a routine part of boarding. Frequently, it falls into the background as we adjust ourselves in preparation for several cramped hours in the sky. But, that speech carries a beautiful message regarding self-care.

he Oxygen Mask Rule is simple: if the cabin loses pressure, oxygen masks will fall from above. You are to place yours on yourself before trying to help others. For parents, this may seem rather preposterous! Of course we want to protect our children and feel an urge to forget our own mask in the process Tof securing theirs. This instinct reflects a common oc- currence in the daily lives of many parents. The problem with breaking the Oxygen Mask Rule is that we increase the risk to not just our own health, but also for those relying on us to keep them safe. If you break the Rule, you may get your child’s mask secured just as you run out of air. In such a scenario, you are at best leaving your child to take on the responsibility of maintaining his safety while working to take care of you. This unintentional handoff of responsibility is unfair and avoidable by following the Rule. to your partner, your other children, and most How do you apply the Oxygen Mask Rule in your dai- importantly, yourself. Include your child in fo- ly life? cus with all of these pieces. If you take yourself out of focus, you may not even be aware when Here are five principles to consider: you need your oxygen mask. The same can be 1. Adjust Focus: Frequently, parents place their said of other members of your family. children in a lens of hyperfocus. For parents of 2. Increase Self Awareness: Practice personal a child affected by autism, this is increased due check-ins. Throughout the day, take a moment to the need to manage therapy and doctor ap- to close your eyes and ask, “Is my oxygen mask pointments, Individualized Education Program secure?” If not, what can you do to get it back (IEP) meetings, social activities, support group in place? Just like the cabin losing pressure, attendance, etc. Try adjusting the lenses to we can begin to feel the effects of suffocating bring the whole family into focus. Yes, as a par- without our oxygen masks. Irritability, racing ent you carry a responsibility to your child with thoughts, tearfulness, forgetfulness, and dis- special needs, but that responsibility extends

22 | Autism Parenting Magazine | Issue 57 AUTISM HEALTH

tractibility are just a few signs that your mask therapy, be able to apply each technique from needs attention. Techniques range from prac- the new expert’s book, or get your kid into all ticing one minute of mindful breathing to of the trending social skills opportunities. This, scheduling a wine and art class with friends, or of course, is not due to lack of effort! Parents taking time to receive your own therapy. Ulti- are human, and chasing the goal of perfect mately, you create your own oxygen mask (and parenting is exhausting and dangerous, not you can absolutely have more than one!). just to your health but to the relationship you are focused so intently on protecting. Oppor- 3. Be a Model: As you increase awareness, con- tunities will be missed, appointments forgot- sider how your child practices self-care. How ten, and words shouted in anger. Every parent are you modeling healthy strategies of self-ad- experiences these “failures,” and that is OK. In vocacy such as saying “no” or asking for a fact, it is perfectly normal. Modeling this con- break? Children with autism often struggle cept for your child includes acknowledging with self-regulation, and it is imperative that the challenge, sharing how it made you feel, they receive constant training to promote and exploring how you navigated the solu- healthy personal and social development. This tions and consequences. is really where you are able to help your child put on her own mask once you have learned to Taking care of yourself provides you with the energy operate and adjust your own. Consider it the to take care of others models healthy living strategies full-circle of self-care! for your child, promotes independence, and creates an atmosphere where loving relationships can flourish. 4. Set Boundaries: Speaking of modeling, one of the greatest gifts in self-advocacy you can teach a child is how to ask for space and time. Chris Nealy earned both his Bach- How many times have you met with a teacher elor’s and Master’s Degrees from who wanted your child to do something be- the University of North Carolina at sides yelling and hitting when he was upset? Chapel Hill (BA ‘05, MSW ‘11) where A major skill to develop is setting boundaries his research focused on autism and recognizing limits. Incorporating senso- and family impacts. Currently, Chris provides of- ry breaks, having access to fidget tools, and fice-based, nature-based, and in-home psychother- scheduling active tasks are included in many apeutic services for individuals, families, couples IEPs for kids at school. What strategies do you and groups affected by autism and/or ADHD. He use when feeling overwhelmed and in need is a hobbyist techie who embraces nature, spend- of a break? Try scheduling a 15-minute “Per- ing much of his time with clients at Triple Play Farm sonal Break Time” each day as way to promote where he practices Equine Facilitated Psychothera- self-care and as a practice in respecting rules py, often integrating video modeling, mobile apps and setting boundaries at home. During these for behavior tracking and journaling, and mindful- break times, set clear guidelines that each ness education through interactive programs. He is member of the family should rightfully expect co-owner of Halcyon Mental Health, PLLC located not to be interrupted by anyone. While this in Matthews on the outskirts of Charlotte, NC. means you won’t be able to shout “Don’t forget He is a fan of Harry Potter, mindfulness, zombies, to take out the trash!,” it also means that you videogames, and getting lost in the woods. In his are teaching your child not to expect you to free time, Chris enjoys reading Stephen King novels, leave your own Personal Break Time because backpacking, and getting his hands on new gadgets. Netflix froze in the middle ofNinjago . Estab- lishing boundaries is the foundation of respect www.CreateYourCalm.com and necessary for any healthy relationship. www.TriplePlayFarm.com 5. Balanced Parenting, Not Perfect Parenting: As a parent, the first thing we must accept is On Facebook at: https://www.facebook.com/hal- that perfection is unattainable. You will never cyonmh and https://www.facebook.com/Triple- read every article on the latest cutting edge PlayFarm

Autism Parenting Magazine | Issue 57 | 23 Let your child show you the way in . . . So you can show them the way out. The Son-Rise Program Since 1974–Unique, Innovative, Proven • Empowering parents to direct their child’s program • Joining each child in order to bond and understand their world • An easy, step-by-step social curriculum that works • A nurturing home-based environment to maximize communication • Engaging each child’s own motivation to learn with love and respect

Call today for a complimentary 25-minute “My 8-year-old son came consultation 1-800-714-2779 over to me and put his www.autismtreatment.com arms around me and we sat embracing. I have waited all his life for that moment. Without The Son-Rise Program, it would never have happened.”

HOME OF THE SON-RISE PROGRAM® SINCE® 1983 –Peter Carroll HOME OF THE SON-RISE PROGRAM 1974 TV Producer, 2080 S. Undermountain Road Brighton, England Sheffield, MA 01257 USA

Read the book, Son-Rise: The Miracle Continues, by Barry Neil Kaufman

ATCA spectrum ad.indd 1 6/13/16 10:41 AM SOCIAL SKILLS SIMPLE WAYS 8to Combat Social Time Stress By Tulika PRASAD

y son’s first birthday was a grand affair even asked for one or showed interest in those he for us…magicians, balloon makers, received. He seemed aloof at his birthday parties, as face painting, clowns, mascots—the if he were standing among aliens, not having a clue whole nine yards. We celebrated each of what was happening. It was then we realized we of his birthdays with just as much en- didn’t have to follow the crowd and do what was ex- thusiasm, expecting that very soon pected on birthdays. We instead decided to do what our son would be dictating how he we knew he would enjoy any day of the week and Mwanted his birthday to be celebrated. Well, autism just give him an overdose of that experience on his changed that plan a little. Over time, we realized special day. So, as a ritual, we now book a night at an he had no clue what a birthday was, what parties indoor water park and let him have a field day. He were, or what it felt like to get gifts—he had never loves it.

Autism Parenting Magazine | Issue 57 | 25 SOCIAL SKILLS

knew that this was more of a learning experience for our son than an unwinding opportunity for us. Harsh, but practical. 2. Define a baseline This was the second most important thing we needed to agree upon. Although we knew our son was going to be uncomfortable and probably not really have as much fun as other kids, we still needed to define how much was too much for him. Some parties can get really noisy, and some can be relatively laid-back. We had to know when it was time for us to thank the host and leave. We needed to ensure that the experience was tolerable, if not enjoyable, for our son so that he was not anxious the next While this took care of the anxiety of his birthday time he was in a social situation. celebration, we still had to deal with social gather- 3. First in, last out, is not important ings—BBQ parties, kid parties, Christmas, Halloween parties, and so many others. Although we wanted to I made it a point to inform the host every time be part of the fun, the pressure of being there with that we would be coming in late and leaving our child was too much. He would cry, try to escape, early. This served two purposes—first, it min- try dragging us to the car, have accidents, withdraw imized the stress for all of us because the du- himself in a corner, or sometimes become too excit- ration was short, and second, it gave our son ed and get physical with other guests. Our knee-jerk the opportunity to be at a fun event but not reaction was to stop going to any of these outings. get overwhelmed by it. We tried to leave be- I started giving excuses for not attending and soon fore it became too much for him. As he got ran out of reasons. It was then I decided that hiding more used to being in situations like these, we away was not a solution. If my son was to survive in could slowly start to stay back longer and en- this world, he needed to learn to cope, and we had to joy more. help him do that. Over time, my husband and I have come up with a less stressful way of dealing with this 4. Take turns problem. Some of the things we do for a “success- To avoid all the sensory overload, our child ful” (it can mean different things for different people) tried to escape on several occasions. Being day at a social gathering are: in an unfamiliar place caused him to have ac- 1. Change expectations cidents, and his PICA would come rearing in stronger when he was left unattended. So, This was the biggest change we made. The my husband and I decided to split time. While fact that our son lacked social skills was not I spent the first 15 minutes keeping an eye on news to us. We had to understand going to a him, he could hang around with his friends party was more of a social experiment than a and then we switched roles…like police patrol. fun exercise. We could not go into a party ex- This strategy has worked really well for us. This pecting our son would sit down with other kids way, we are able to catch up with our friends and play a board game or run around playing and also not let our son feel insecure or unat- tag. We had to accept that it was going to be tended. One of us is always with him or watch- tough on him being around so many people ing over him. and so much noise, and that it was going to be some work for us to keep him calm. When this 5. Participation is not mandatory expectation changed, we knew what we were My son never showed interest in his own birth- getting into. We complained less, because we day; why would he be excited about some-

26 | Autism Parenting Magazine | Issue 57 SOCIAL SKILLS My son is not just non-verbal, he also cannot understand conversations. Still, when we go to a social gathering, I make sure I talk to him about it on our way to the venue.

one else’s? I stopped dragging him around the the trick for a little while as well while he tries birthday cake, forcing him to sing, clap, and to cope in a challenging environment. pose for pictures. It was such a relief. Previous- 8. ly, I would try to push him to do those things Talk about it because that’s what kids do. We both ended My son is not just non-verbal, he also cannot up being upset. Now, when I stopped, I noticed understand conversations. Still, when we go he gets excited watching other kids and some- to a social gathering, I make sure I talk to him times claps on his own. He is more invested about it on our way to the venue. I tell him when it’s not imposed on him. It’s the same for where we are going, who we will meet, what party games. I know he hates getting his face the party’s about, and what to expect there. I painted, or being inside a bouncy castle, so I really don’t expect him to understand much, don’t push him anymore. I encourage him, I though I hope that one day he will, but I don’t want him to experience and try something want him to be taken by surprise when we ar- new, but not by making him uncomfortable. I rive at the party. Even if he can catch bits and would rather have him leave the place feeling pieces of what I told him and make some sense, happy and relaxed than upset and stressed. it’s much better than not telling him at all. I’m 6. Be open sure he braces himself for what’s coming if he is informed better. I also make it a point to ex- Parties can be stressful with so many unfamiliar citedly talk about what all we did at the party people. I still generally avoid parties if I know once we are back home so that he has good there will be a lot of new faces. Such occasions memories of it. generally mean the guests won’t know about my son’s diagnosis, and that’s a conversation I The strategies we use seem to be working well, but tend not to have all the time, especially not on then there are always days when, like any other kid, occasions when people have gathered to have he throws us a surprise. Well, who said autism was some fun. However, when I do find my son and easy? It makes us work hard. It can be fun one day myself standing next to a stranger, who is star- and a challenge most of the days. As long as we ing down at him out of curiosity or judgment, keep trying, the journey will be worth the effort. We I would rather introduce myself and tell about might fail, but as long as we are not defeated, we will my son. This levels the playing field. Now we continue to work our way through it and enjoy the both know, and so the heaviness lifts off of my party while it lasts. head, and I can breathe again while they ru- minate over the new information. Being open about my son’s autism at parties, or in general, Tulika Prasad and her husband are parents to a has been one of the best decisions I’ve made. seven-year-old named Vedant who was diagnosed with autism when he was three. An absolute delight 7. Sensory activity and an exhausting bundle of joy is how they like to describe their son who teaches them new lessons I know for a fact that a sensory toy can keep every step of the way on their long journey into the my son calm for a while, so I carry one with me. puzzle that is autism. In this post, Tulika talks about This keeps him engaged and more in control, her experiments with finding happiness in a home and it buys me some more time. Whatever sen- living under the shadow of autism. The original sory diet I can think of, I offer him every now post can be found at: http://www.braindroplets. and then— also, a tight hug, a swirl or two, com/autism-party-strategies/ tickles, some calming music—they seem to do

Autism Parenting Magazine | Issue 57 | 27 2001177 AUTISM SOLUTIONS AUTISM MOM’S SELF CARE: 6 Quick Ways To Reduce Stress and Gain Clarity By Kendra GARCIA, COTA/L

On top of the “duties” of everyday life, dealing with unscheduled meltdowns, potty training issues, countless therapy sessions, and endless fighting with the school system to get the much-needed and well-deserved accommodations and services, parenting a child with autism can be VERY stressful and overwhelming.

any parents may attest to the fact that we neglect ourselves, both physically and mentally, con- become really good at operating on auto tinuously giving of ourselves until there is nothing left pilot. It is as if our bodies operate and move for ourselves. What I’ve discovered during this journey in almost a robotic way. It is the same thing, is that it is imperative that I set aside time for myself in Mdifferent day (wash, rinse, repeat). order to de-stress, decompress, and regroup. Because most children on the spectrum thrive on rou- Below are six easy ways that helped restore my sani- tine, a typical daily routine may be pretty much the ty and bring much needed clarity to my life as a mom same, with a few randomly thrown in meltdown bo- of a child with autism. And the best part: it can be nuses. As parents of children with autism, we often done in just 30 minutes or less.

Autism Parenting Magazine | Issue 57 | 29 AUTISM SOLUTIONS

1. Take a nap: Believe it or not, a 30-minute pow- 5. Listen to soft music: Listening to soft music is er nap can do wonders for your mind and body. Tak- very instrumental in relaxing your body and mind. It ing a nap, if only for a short time, will help to stave off is also very instrumental in meditation. Music helps sleep deprivation and allow your body to reset and to reduce symptoms of depression, and it can even receive a much needed boost of energy. take you from a sad place to a happy place.

2. Take a hot shower: Taking a hot shower will help to relax your overworked, tired limbs and will help to relax those achy muscles. A nice, hot relaxing shower will help you find clarity. Lavender soaps and body washes are excellent relaxation aids for the body and mind.

3. Take a 30-minute walk: Walking triggers the release of endorphins, which is a potent brain chemical that, when released, helps to relieve pain and stimulate relaxation...not to mention, it is great for exercise and weight loss. Walking is great for the heart and helps stave off depression.

6. Read a book: In addition to making you smarter, reading also helps to reduce stress. Reading a good book can provide a great (healthy) escape from the day-to-day stresses that come with being a parent of a child with autism. Try finding a book or magazine that you enjoy. Whatever you do, please remember to take care of yourself. You are not benefiting anyone, least of all your child, when you are operating at less than your best. Being a parent of a child with autism is not a race, but a marathon....so pace yourself.

Kendra Garcia, COTA/L “The OT Strategist” is Am- 4. Get a massage: Getting a massage will allow azon’s #1 bestselling author of the book Life be- your body to go into a state of relaxation. Massages yond the Diagnosis. She is a public speaker, coach, reduce muscle tension and allow for almost imme- Huffington post contributor, IEP special education diate stress release. Some trigger-point massages al- parent consultant, autism mom and advocate. She low the therapist to target your trigger points, which works as a pediatric-adult occupational therapy may aid in relieving stress headaches and pain asso- provider. Kendra can be reached at www.Parent- ciated with stress. According to the American Mas- ingBeyondAutism.com or TheOTStrategist@gmail. sage Therapy Association, a massage helps in reduc- com. To connect with her on social media: @The- ing high blood pressure brought on by stress. OTStrategist on Facebook, Twitter, and Instagram.

30 | Autism Parenting Magazine | Issue 57 A EDUCATION Ways to Achieve Tele-Conference Course Success with Special Abilities By Robbin MAY

Online and tele-conference courses have become prevalent in secondary and post secondary institutions, especially in rural areas. I have heard more than once that being able to learn in this way is a life skill.

y son was diagnosed as high-func- port a student with autism through tele-conference tioning autistic when he was three- courses. and-a-half years old. Throughout his education, he has had many ups and If a student with significant disabilities is able to downs. In general, he achieved at a succeed in regular academic or advanced courses, normal academic level but exhibited they should also be capable of success in the same significant social disabilities, especially types of online or tele-conference courses. It is fair Mwith respect to understanding the expectations of to assume they will have similar difficulties as with his teachers. He attended a small rural school, which any in-person course. For example, my son was ca- suited him, as he felt comfortable knowing most pable of succeeding in regular classroom settings. of the staff and students. However, being a small However, with the tele-conference course, there was school, less classroom courses were offered, and so much less interaction between him and the teacher, he took precalculus and calculus by tele-conference. and he had a lot more difficulty feeling successful. It These courses created many new challenges for him was important for the teacher to be aware of his spe- and for our family. My hope is that this article will cial needs in order to support him throughout the help parents and teachers be better prepared to sup- course. Before the course begins, it is worthwhile

32 | Autism Parenting Magazine | Issue 57 EDUCATION to discuss your concerns as a parent with the school school administration. It is amazing how a few small staff who already works with the student and with adjustments can make a significant difference to the those who are responsible for the online or tele-con- quality of learning. ference course. It might be helpful to have a team meeting with those involved, even including the stu- Determine the best workspace for your dent, in order to discuss any issues and to plan for the child new academic situation. The teacher of the online or At home, create time and space for the course work. tele-conference course needs to be made aware of For us, this was the kitchen table as I was making din- the student’s disabilities and/or concerns. It is very ner. The table would be clean and the space relatively possible that the distance teacher would be happy quiet. I was there to answer questions, if necessary, but to make adjustments to his/her teaching methods I was busy with dinner prep as well so my son didn’t and get to know a new student with special abilities. feel I was intruding too much. We have found over It may be a challenge for the teacher, but one that time that having a quiet space in his own room with a would be rewarding. desk is not the ideal study space because he has trou- ble staying focused on his task. At the kitchen table, Prepare ahead for the course he has none of his recreational distractions and he is In the week or so before the course begins, the teach- motivated to get the task done. Utilizing the kitchen er should publish the syllabus and other course ma- table as family study area has brought us together in terials on the website. It is helpful to become familiar my son’s learning. You might create a learning commu- with this website and to follow along as the course nity by bringing your own study materials to the table. progresses. The student may be able to do this on his/her own, or it may be that a parent will need to Find people who support your child do this, or help with it. We found it helpful to follow I have learned over the past 20 years that it is not al- a course calendar that the teacher updated weekly ways possible to have an expert guide us, but the most and also to print out all of the class notes that were important characteristic of an advocate is kindness uploaded to the website. We created a binder with and the willingness to work with us. My thanks go to all of the class notes and assignments in chronolog- those who worked day in and day out with my son, to ical order and with sticky notes to denote the dates those who got to know him and wanted to see him (the resource teacher at the school initiated this). content and successful. These are the individuals who truly made a positive difference in our lives, and who Confirm the course is running smoothly maintained a bond with us even when the job was In the first week of the course, it is important to make done. In any school, you can find staff members with sure that things are running smoothly and to make these qualities who will act as an advocate for your any adjustments. For example, my son had a lot of child. Look out for these jewels, let them know how difficulty with the sound quality of the tele-confer- they can help and how much you appreciate them. ence. He has some auditory processing difficulties and the low noise from the system made it impossi- Online and tele-conference courses are here to stay. ble for him to listen to the lecture. After talking with They are an important component of the education- him about the sound quality issues, he wrote a real landscape. As parents and as educators, we need spectful email to the teacher to explain the problem. to be able to find ways to maximize the benefits of The teacher then tested his sound equipment and these opportunities for all students while still ensur- installed a new microphone. The new microphone ing the authenticity of the learning experience. helped, but did not cure the problem, so the school replaced the computer speakers. With these two ad- Robbin May is a teacher living in An- justments, my son was able to follow the class com- tigonish County, Nova Scotia. She is fortably. Be sure to ask the student how things are currently working hard to raise two going, and make note of any issues. Discuss what healthy, happy children, some chickens, might be done to improve the situation. Have the a garden, and to complete a Master’s in student communicate his/her concerns directly to Education. the course teacher, to the resource teacher, or to the

Autism Parenting Magazine | Issue 57 | 33

PERSONAL NARRATIVE The Remarkable Day Daphne MET THE ‘DOCTOR’ By Jackie NELSON “We are all stories in the end. Just make it a good one.” – Doctor Who, BBC Network

ne evening, all snuggled up and ready for anyone’s face, but with her autism came speech, lan- bed, my daughter Daphne and I were chan- guage, and social skills delays. Daphne would get nel-surfing and landed on the BBC network. easily frustrated because she wanted to succeed so The “Blink” episode of Doctor Who, starring badly. The struggle in her expression and reactions David Tennant as the Doctor, was showing. were heartbreaking. As her mom, I just wanted to We were immediately sucked in. At that make things better and easier for her. At the begin- time, I had no idea what Doctor Who was ning of kindergarten, Daphne could speak in simple Ogoing to mean to Daphne and our family, but we sentences, but still babbled a lot. Her word sounds were in for one incredible autism ride. were unclear at times, and I would have to translate her meaning to those who interacted with her. She Daphne is a six-year-old girl on the autism spectrum. would try to talk with friends, but would struggle at She has a way about her that could bring a smile to times. Also, there were only certain friends she would

Autism Parenting Magazine | Issue 57 | 35 PERSONAL NARRATIVE play with and talk with on a limited basis. Friendships and-forth conversations. Lottie understood every- were so important to her, but we were worried that thing Daphne said, and couldn’t believe this six-year- due to the lack of language and rigid play skills, kids old grasped all of the plot twists and understood the wouldn’t want to play with her. Then, Doctor Who en- show as well as she did. On Valentine’s Day, Daphne tered our lives. wore two hearts to represent the two hearts of the Time Lord. She would also walk around to “exterminate” people, a common phrase of Dr. Who’s Daleks, or call them an “adipose.” Thankfully, not a lot of people know what an adipose is! I would crack up, because as soon as Daphne would call me an adipose she would immediately say, “I’m just kidding. You’re pretty like Amy Pond and Rose.” At home, we completely immersed ourselves in the world of Doctor Who. Her room was completely re-done in a Doctor Who theme. Her birthday party was Doctor Who-themed. The more we immersed ourselves in her interest, the more she blossomed. She even developed adorable crushes on David Ten- nant, Matt Smith, and Peter Capaldi. When we finally watched the episode “Day of the Doctor,” Daphne was running around the house screaming like a mad woman because all her boyfriends were all in one episode, and she couldn’t contain herself! Luckily, our neighbors know us, so they were not alarmed at her very high-pitched scream of excitement when Peter Who would have thought something like Doctor Who Capaldi’s eyes got flashed on the TV screen. would have such an impact on our lives? But, it has. As we watched more and more episodes, something inside Daphne opened up. She had something important now to talk about, and the world was going to listen. The “W” sound has been very difficult for her, and since her favorite villain became the Weep- ing Angels, she was determined to say it just right. For a while, it sounded like “sleeping angels,” which would cause her massive frustration, because she knew that was the wrong sound. Every night, I would hear her practice in her room until the one day she got it. Loudly, she ran out of her room screaming, “Weeping Angels!” and then broke out into the most incredible laughter. At school, they also noticed an increase in her speech, language, and social skills. For a while they didn’t know what Daphne was talking about, because they did not watch Doctor Who. I mean, come on, what’s a Dalek, Cyberman, Weeping Angel, or Tardis? Daphne had a student teacher, Lottie, who started working in her autism classroom. Thank goodness for Lottie, because she knew exactly what Daphne was talking about! They began having conversations–real, back-

36 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE

In the spring of 2016, Comic Con was coming to St. Louis, and I had to get her there and meet at least one of her “boyfriends.” We ended up getting two photo ops with the eleventh Doctor, Matt Smith. The night before, we made cards for him and David Tennant, complete with two hearts and very sweet notes. www.aikoandegor.org, Writing is difficult for her, but she was determined to get these cards perfect. We prepared her Tardis dress facebook.com/aikoandegor, and bows for the big day, and went to bed. The next @aikoandegor morning, Daphne could hardly contain her excite- Aiko & Egor: Animation 4 Autism is a tablet and smart ment! Her self-stimming behaviors were through the • phone app designed for children with autism to easily roof! Self-stimming is a way for Daphne to regulate learn and engage with their families. her system when she becomes over stimulated or has extra sensory she needs to release. She was doing a • To download, search “Aiko & Egor” on the iTunes Store lot of pacing, finger-wiggling, and crazy-fast mouth for your Apple device and the Google Play Store for your noises, which I have no idea how she produces. As Android device. we walked into Comic Con, Daphne was immediate- • Visit www.aikoandegor.org to learn more about the app, ly at ease. She posed, very nervously at first, with a watch animated videos, and sign up for our e-newsletter. life-size Dalek. She had to make sure it wasn’t going to exterminate her first. We bought her souvenirs The app is developed by See Beneath, and, finally, it was time to meet Matt Smith and give a San Diego-based nonprofit co- him her cards. She did great waiting in line. When founded by autism experts with years we got in the tent with him, her eyes lit up. I quickly of experience in autism research and told Matt Smith her story and he gave her a big hug intervention. and talked with her about her cards. It meant more than the world to us and to Daphne that he took the time to care. He didn’t have to go above and beyond our expectations, but he more than exceeded them, and this experience will stay with us forever. It may have been a small act of kindness from him, but this small act, and the show he was a part of, has done more for Daphne and our family than anyone could have ever imagined. She talked our ears off for days about how she met her ‘boyfriend.’ Thank you Matt Smith, and the Doctor Who franchise, for helping my Daphne blossom. She shows an extraordinary passion for life and individuality. She is my inspiration. We will never forget the day Daphne met the Doctor.

ARE YOU INTERESTED IN ABA THERAPY Jackie Nelson is a mom of a child with autism who worked with special school district for almost 10 FOR YOUR CHILD? st years working with children and teenagers on the Parents 1 offers a two day intensive training autism spectrum. She recently resigned from her for parents of children with Autism focusing on job to focus 100% on her family and their autism the principles of Applied Behavior Analysis. This journey. Recently, Jackie has started writing a book class is for parents who want to be involved and to share the struggles and victories of their family educated and active in their child’s learning and and our wonderful daughter, Daphne. You can follow Jackie on Twitter @jackinelson4. development. Classes offered monthly. Sign up now to jumpstart your ABA journey! Email- [email protected] and visit www.Parents1st.com for more information. PARENTAL ADVICE Easy Ways to Prevent EMERGENCY SITUATIONS with Autism By Joyce BENJAMIN, RN, PA

olice are called to the scene of an accident. The boy continues to look out the window and makes The driver is unconscious. In the back seat is no attempt to look at the EMT or police officer. He an 8-year-old boy with blood coming from begins hitting his head with his fist and hollering in his forehead. The officer first on the scene a monotone voice. sees the driver is unresponsive and the boy in the back is just staring at him. “Stop it, stop it. Don’t hit yourself! Are you OK? Say something,” he pleads with the boy. “What’s your P “Are you OK young man?” the officer asks. name? Does anything hurt? Does your head hurt?” The boy doesn’t respond. He stares out the side win- The boy begins to flap his hands and shake his head dow with a blank look. The officer, assuming the boy violently. is in shock, flags the EMS responder to get to the boy. Meanwhile, the other EMT puts the driver in a neck “My name is Dan. Are you OK? I’m here to help you. collar and moves her to the ambulance. “I’m going Your Mom is going to be fine. Just look at me,” di- to bring him in another wagon,” says the EMT with rects the EMT. the young passenger. At that, the boy stops flapping

38 | Autism Parenting Magazine | Issue 57 PARENTAL ADVICE and hollering. “Wagon?” the boy repeated. “Wagon, person. Let’s keep him as calm as possible until we ride wagon,” he said with his eyes wide. identify him and his guardians.” “Oh, you can talk! What’s your name?” the EMT ques- This is not that unbelievable or different from the sce- tioned him again. Still there was no response to the nario that plays through the mind of every parent or question. caretaker of an autistic child. In this case, it was lucky the doctor called a neurologist who had a clue and Both ambulances arrive at the emergency room could decipher that it was not the head injury that around 7pm. The mother is taken to the trauma bay, was causing the inability to follow directions or com- while the boy is taken to the other end of the ER, municate. Even though he was eventually identified to room 10. The boy’s name remains unknown. The as being on the autism spectrum in this scenario, they driver’s name is Margaret Hamstead. As the ER doc- were still not any closer to having the child’s guard- tors work on the woman, the police are sent to the ian or emergency backup family. They also didn’t have driver’s home to see if someone can identify the boy. any concept of his medical background, medications, There is no one there. or things that would set him off or calm him down. The driver remains unconscious. The ER doc deter- mines she has a subdural hematoma and requires Another Emergency Situation immediate surgery. The boy is accessed by a different Donna took her three children with her to the super- ER doctor. After repeated questions and no answers, market. The twin girls, Rachel and Ronda, were 12 the doctor calls the neurologist to see the boy. The years old and their brother, Michael, was 16 years old. child looks around continuously, trying to see how The four of them always went to the shopping center to get the side rail down. He finds the ophthalmo- together because Donna wanted them to learn how scope on the wall and plays with the light, shining it to shop for items themselves and practice adding in in his eye, on the ceiling, and in his mouth. An hour their head and estimating. later, the neurologist arrives. One of these shopping days, Donna sent the twins to “Hello there. What is your name? My name is Dr. get fixings for spaghetti and French bread and salad Potts,” says the neurologist, a big round woman with for the dinner. Then she sent Michael to go get de- rosy cheeks and a big smile. odorant, toothpaste, shaving cream, and band-aids. The girls decided to split their task up between them. “Mrs. Potts! Where’s Chip? Where’s Chip, Mrs. Potts? Michael went off to the personal items aisle. As Mi- Be our guest, Be our Guest,” the boy repeats with a chael walked toward the personal items section he smile. passed the movies and toy aisle. There he saw the “How many fingers do you see?” she asks. newest Batman movie and picked it up to look at it. The boy makes no response. He holds his fingers up “We’re gonna beat you Michael,” taunted Rhonda as to replicate the number she has up. she passed Michael checking out the toy aisle. “That’s correct! Good job. Can you look up?” she asks, Michael quickly ran to the personal items aisle and trying to see if his eyes would move up and if he can grabbed the shaving cream and toothpaste. He follow directions. He doesn’t. He looks at his fingers couldn’t remember what the other items he was sup- as he says “Be our guest, Be our guest.” posed to get. Frustrated, he started hitting his head and flicking his fingers. Now he has shaving cream, Now he starts to get agitated and begins looking toothpaste, and a movie in his hand. He started pac- around. He tries to climb off the stretcher but the ing up and down the aisle trying to spot something nurse comes and puts him back on the stretcher. He that would remind him of what he was supposed to begins hitting her while he wrestles to get down. get. It was useless. Now he would lose to his sisters. “Stop. Let him go,” the doctor instructs the nurse Rachel and Rhonda had gathered their things and calmly. “I think he is on the autism spectrum. Any taken them to their mother’s cart. “I’m gonna wait in attempt to touch him or restrain him will only agi- the car Mommy,” said Rachel and she skipped out the tate him more. He is probably looking for a familiar sliding doors.

Autism Parenting Magazine | Issue 57 | 39 PARENTAL ADVICE

Michael caught a glimpse of Rachel running out the they confiscated from Michael she knew what hap- doors and thought they were leaving him so he ran pened. Explaining to the security guard and man- after her with the items still in his hand. The manager ager started with “My son is autistic...” Eventually saw Michael running out the door with merchandise they released the two kids and no police report was in his hands and ran after him after calling for secu- made. But this went well because Mom was there. rity. What if she wasn’t? “Stop there, young man! Where do you think you’re These are the kinds of incidents that happen every going with that?” the manager hollered as Michael day in the 1 in 68 population of families of autism. My went running to the car after Rachel. Security ran husband and I, like most of the parents with children out the other set of doors to head him off at the car. on the spectrum, have explained to multiple people As security grabbed Michael’s arm, Michael started our children are both autistic and didn’t mean to hit, flailing his arms and fighting him off. Rachel was or bite, or spit, or run off, or steal, or any number of staring at the men and Michael fighting and started things that are interpreted as illegal or harmful or in- screaming. appropriate. Wouldn’t it be nice if people could just “get it” and understand without us having to explain “Stop, stop, let go of him,” she screamed. their behavior all the time? Unfortunately, there is no The security guard pulled out handcuffs and tried outward sign of autism for many on the spectrum. to put them on Michael. Michael started hollering Police, store managers, security guards, ER doctors, “Momma, Momma, help Momma!” Donna and Rhon- nurses or EMTs aren’t mind readers or omniscient. da were still in the store waiting at the checkout for Even if they identified that the person was on the Michael. autism spectrum, it doesn’t mean they would know what to do or who to call. That is why my husband Rachel screamed to let her brother go and started to and I formed Autism FYI Org. and the AFYI National run back in the store after her mother. The manager, Registry. For more information about the organiza- assuming they were in it together, grabbed her and tion and registry, go to www.autismfyi.org. put her in handcuffs too. They walked them both up to the store while calling the police on the phone. So What Can You Do to Help Prevent Michael was steady screaming for his mother. The Emergency Situations? security guard began making fun of Michael saying,  Continue to be vigilant 24 hours a day, like you “Your mother can’t help you now. You should have already are. thought of that before you stole those things.”  Accept you have had years to learn how to in- While Rachel was screaming “We weren’t stealing terpret your child’s language, behavior, spirit, anything,” they were walking back into the store. intentions, and others have seconds to make Donna’s ears perked up at the familiarity of her chil- that determination, in an emergency. dren’s voices. She left her cart and ran to the sound. She found both children handcuffed by the store  Understand their interpretations will be wrong manager and the security guard. Michael and Rachel unless they have someone in their life on the were frantically calling her name while she tried to autism spectrum or have been taught what to make sense of the situation. When she saw the items look for and how to respond.

My husband and I, like most of the parents with children on the spectrum, have explained to multiple people our children are both autistic and didn’t mean to hit, or bite, or spit, or run off, or steal, or any number of things that are interpreted as illegal or harmful or inappropriate.

40 | Autism Parenting Magazine | Issue 57 PARENTAL ADVICE

 Commit to teach others in your community about autism by exposing them to your child. Joyce Benjamin is a Registered Nurse and Physician Assistant by training, wife to a Plastic Surgeon, and  Offer to give a sensitivity class and share re- mother of two adult sons on the autism spectrum from sources available to learn about autism. Bowie, Maryland. Her career as an RN and later PA, was focused between Pediatrics, Emergency Medicine, and  Consider putting something on your child Plastic Surgery assisting her husband. As a mother of identifying them as being on the autism spec- two young children, she chose to homeschool her sons trum. This gives others immediate information through the ages of 10 and 12 to insure they were being special considerations are necessary in their in- taught utilizing their strengths. After that time, she en- terpretations and communications. Have your rolled them into a private school for children with spe- child carry an ID card with emergency infor- cial education needs, and brought her aging parents to mation on it with different contacts and their live with her. She continued as a NAET practitioner and phone numbers as well as tips on how to inter- as a nurse, assisting her husband. Four years after her act with them. sons graduated in 2009, the family was asked to do a documentary for MTV Tru Life Series, which was aired  Notify your local police and EMS team about in April of 2014. In August of 2014, the Benjamins cre- your child and his or her diagnosis and ask ated Autism FYI Org establishing the first national reg- them to add the information to the 911 infor- istry for safety of those on the autism spectrum. Joyce mation dispatch system. serves as the COO of the organization and still assists  Make a point to let the local store personnel her husband in his surgical practice. Her passion is to get to recognize and know your child so they help those on the autism spectrum, keeping them safe, are in the know when and if they see some- providing them with employment opportunities, and thing out of the ordinary. Finally, consider reg- establishing a supportive community for them to live independently as adults. In her spare time, she likes to istering them at Autismfyinationalregistry.org. write, sew, and create dolls. PARENTAL ADVICE 3 AMAZING WAYS Parents of ASD Teens Can Benefit from a Life Coach

By Sharona SOMMER, CPC

As a parent of a teen or young adult on the autism spectrum, you have probably had to focus most of your attention on getting all the pieces in place to ensure your student has a successful transition. Whether your son or daughter is going to college, entering the workplace, or learning to live independently, being a special needs parent entails more than many people realize. Over the years, you have had to take on many responsibilities, such as advocate, teacher, social worker, nurse, and so much more!

he chronic stress that mothers of children with autism experience has been compared to the stress experienced by combat soldiers! This may not come as a surprise to the many parents who feel their level of stress is not easily understood by family and well-mean- Ting friends. According to a recent survey of parents of children with autism, more than 80% reported sometimes being “stretched beyond their limits.” The three most stressful factors stated in the related article were: concern about long-term outcomes for their children, societal acceptance of the condition, and the limited social supports received by parents. What can parents do to deal with the stress of raising a child on the spectrum? Life coaching is a relatively new face when raising their teens with autism through industry, and employing a life coach has been proven adulthood. to lead to higher levels of self-awareness, lower stress reactions, and increased self-confidence among fam- 1. Families Develop Practical ilies with a child diagnosed with autism. According Expectations and Acceptance to a 2014 study conducted by the International Coach Remember when your child was young and he/she Federation, having a life coach was rated as a valuable impressed you with a wealth of knowledge? Perhaps investment that resulted in long-term positive out- your child surpassed peers with all the facts and triv- comes for more than 98% of the participants. ia, whether it was about history, geography, movies, Here are three ways that the whole family benefits space, dinosaurs, or whatever else he/she had a spe- when parents are coached around the issues they cial interest in. As parents, we tend to create a fu-

42 | Autism Parenting Magazine | Issue 57 PARENTAL ADVICE ture story and timeline about our children’s future. We imagine them as scientists, paleontologists, or historians. We are so proud of their knowledge and achievements that sometimes it is easy to get caught up in the story and create unrealistic expectations of what the future will be like. It may be hard to accept that the road to a college degree may be a lot longer than originally envisioned, or that the road may lead to somewhere else entirely. A parent coach works with parents to help them gain clarity about what the present looks like and reframes expectations to be more realistic to meet their student where they presently are. Letting go of the timeline and focusing on present successes and challenges creates a more positive outlook and benefits both the parent and the student. Young adults are already feeling the pressure to follow their peers, Coaching is often confused with therapy, and there is but in reality, what difference does it really make a some overlap. Both therapy and coaching can work on few years from now? Your student will achieve goals improving communication, confidence, and moving at his/her own pace, however long it takes. Wishing it forward with your goals, but here are a few key to be faster or pressuring a student to push beyond differences. their capabilities will not only result in negative outcomes, but will affect family relationships as well.

2. Improved Communication and 3. Positive Outcomes Family Relationships Ultimately, every parent wants the best possible fu- When parents are asked what their top goals are for ture for his/her child. Although the path may not be their student, the answer invariably is that they want smooth or direct, having a parent coach can ease the their transitioning young adult to be healthy and transition to adulthood for the whole family. Having happy in an independent life. It can be very challeng- each member of the family understanding each oth- ing to adjust communication styles as children tran- er’s perspective leads to more acceptance, stronger sition from child to teen to emerging adult. It takes relationships, and a foundation of trust and open more than patience to speak to your teen or young communication. As a result, your young adult feels adult in an adult manner when developmentally he/ safe to take risks and go out into the world to be the she is still behaving as a juvenile. productive, happy son or daughter you know he/she can be. It takes time, but with patience and an open Positive communication starts with you, the parent. heart and mind, anything is possible! In order to get the respect and cooperation you are looking for, you need to understand what your student is going through on a daily basis. Having a coach Sharona Sommer, CPC is a Certified facilitates the process so that you can gain perspec- Professional Coach and is the Direc- tive on the current situation without getting caught tor of Family Services at CIP (College up in the history of the relationship. Raising a child Internship Program). on the spectrum can be very challenging, but having your own coach supporting, encouraging, and For more information on CIP (College Internship guiding you through could make all the difference in Program), please visit: www.cipworldwide.org creating a positive, healthy, and mature relationship with your young adult.

Autism Parenting Magazine | Issue 57 | 43 PERSONAL NARRATIVE Amazing Puppet Maker Changes Boy with Autism’s World

By Geri ANDERSON and Marcus WILKINSON, Photographer and Translator

Autism knows no boundaries. It pays no attention to skin color, language, or nationality. In Oaxaca de Juárez, Mexico, a puppet maker discovered that some children who had never talked before could talk to his puppets.

or 30 years, José Octavio Azcona y Juárez has been creating monos de calenda for fes- José working in tive occasions, which are frequent in Oaxaca. his workshop This state in southern Mexico has the largest population of indigenous people in North America and has a myriad of traditional cel- Febrations. Monos, as they are commonly called, are gigantic dolls carried in parades by strong, young men because they weigh over 20 pounds. They have huge floppy arms filled with pillow stuffing and dance to the rhythm of the band as they march through town. The puppet carrier has a peephole at the waistline, but folks seldom notice because they are laughing at the funny puppets with big eyes and wide smiles, dressed in colorful, mismatched taffeta clothing draped over a frame made of carrizo (a bamboo-like local reed). Because he wants this centuries-old tradition to continue, Jose began making miniature monos that could be carried by children. Especially popular are his representations of television cartoon charac- ters. “If they start young, they will still be fond of the puppets when they get older,” he says, telling about a 25-year-old man who still has the first mono he puppet.” Not only that, on Father’s Day, the child bought. He is now the supervisor of the Monos de made him a poster-sized card. Child-like scribbling Calenda for La Guelaguetza, a major festival in Oaxa- said, “You are like a father to me.” A small balloon and ca attended by people from all over the world. red ribbon decorated the greeting. This card has a prominent place in José’s workshop and in his heart. It was quite by accident that José noticed his friend’s child with autism talking to one of the child-sized José explains that he doesn’t have a diploma or any puppets. “He never talked before,” José says, “but kind of official certification. “Mi diploma es mi cora- there he was, laughing and chatting away to the zon,” he says, meaning, “My diploma is my heart.”

44 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE

from his imagination, others bearing resemblance to Marcus with José the purchaser. in peephole When asked which one is his favorite mono, José shrugs. His favorite “customer,” however, is a child with autism who laughs and talks to a mini-mono.

Geri Anderson has had a career in writing for news- papers, magazines, and public relations. In the 1970s and 80s, she was an instructor at Broward Community College in Florida and also worked as a counselor for trou- bled teens. Geri has written a memoir, Oh Oaxa- ca, Living, Laughing and Learning in Mexico, about her life in retirement. Articles about her travels in Mexico can be found at http://www.mexconnect. Examples of monos for kids com. Marcus Wilkinson’s blog about all things Mexi- can can be found at: http://www.mexicancorrido.com

“The fight is within… highly recommended” —Jeffrey McMahon Fighting Autism

Parenting What he likes most is that the dancing monos make exceptional children people smile—Mexicans, foreigners, boys, and girls. while preserving He sells made-to-order monos and also brings his inner peace puppets to daycare centers, schools, and homes for children with mental and physical challenges. His re- by ward for these sessions are the smiles of the children. “Con cada sonrisa que la gente me regala es alimen- STEVE to por me alma.” (Every smile that is given is food for my soul). WA L S H His funny, creative puppets have not gone unrecog- nized. José has a permanent display at the presti- gious National Museum of Anthropology in Mexico City and also in the Cultural Museum of Oaxaca. He Now in paperback and Kindle editions gets orders for religious fiestas, birthday parties, and Purchase now at Amazon.com weddings from throughout Mexico. The facial features are made of paper mache and paint—some

Autism Parenting Magazine | Issue 57 | 45 AUTISM HEALTH LEFT, LEFT, LEFT, RIGHT, LEFT How to Use Peripheral Vision to Engage Your Child with Autism

By Maria ROHAN, RN, BSN

It’s a PARTY. things out of his/her peripheral vision. If you hold an ice cream cone in the peripheral vision of a child ou hold an ice cream cone in front of a child’s with autism, the child’s brain activity will go haywire face, and it creates a party in the brain. The child’s brain activity goes wild and sees compared to if you held it in front of the child in his/ nothing to the left or right, only seeing her central vision. Studies focused on brain activity what’s in front of him/her. What some may have shown the amount of high brain activity a neu- not know is with a child with autism, the rotypical child has when seeing something in its cen- Ybrain throws a party when the child sees tral vision is the same amount of high brain activity

46 | Autism Parenting Magazine | Issue 57 AUTISM HEALTH

Your child is his or her own person: remember that. A child may have autism, but autism does not have him/her. If we want to truly connect or help, we have to enter their world. a child with autism has when he/she sees something 4. Curiosity Doesn’t Kill the Cat: peripherally. It Engages Your Child Most parents long for engagement with their child. Every child gets curious. The child’s brain will start We constantly prompt the child’s face straight into to throw a party, and like every child, he or she will central vision to look at us. Most children will turn want the toy car you have. At some point, the child their neck and face to look at you, but their eyes will will break the barrier between parallel play, engage wander in their peripheral vision. Why? It is not al- in your world, and put you into his/her central vision. ways because the child is avoiding eye contact, it is At this point, he/she will enter your world and you because the brain sees better peripherally than cen- will have entered the child’s world. trally. 5. A Fun Time With a Dash of ABA Here are some tips to help you better engage with When the child wants the toy and you have begun your child: to play together, add in an applied behavior analysis (ABA) lesson while playing. Before the child can play 1. Watch Your Child with your toy car, have him/her put the car inside of Your child is his or her own person: remember that. a cup, on top of a cup, or on the side of a cup. Draw A child may have autism, but autism does not have outlines of shapes with tape on the floor and have him/her. We are constantly taking children to thera- the child trace the outlines with car or put the car pies and to school. We are putting children into our inside of the square/circle/rectangle. Throw the car world and our settings. However, if we want to truly connect or help, we have to enter their world. Watch them when they are alone. Watch which toy they are attracted to, what they play with, or what colors they always pick. See who your child is and use it as a gateway to engaging with him or her.

2. Become a Two-Year-Old: Parallel Play Here is where the peripheral vision comes in. At two years old, most kids do not play with other kids: they play parallel or alongside. Take the information you found by watching your child. When your child is playing with a toy car, get a toy car, get in his peripheral vision, and mimic the exact same way he/she is currently playing with the toy.

3. Sell It, Add Drama After a few seconds of mimicry, do your own playing with the toy car, but add drama. Use the sensitive sensory system of child with autism to your advan- tage. Make loud car noises, make the car crash, do flips, or even let the car talk to you.

Autism Parenting Magazine | Issue 57 | 47 AUTISM HEALTH into water and make a “big” splash or a “small” splash. forced. The child feels as if you are his/her equal in- The child gets what he/she wants and you get what stead of feeling inferior. This makes the child more you want. If the child tries to take your toy car and prone to getting something out of the teaching, and leave, redirect him/her in front of you. it’s fun!

6. Enjoy Your Child Remember not to forget to enjoy who your child is as you work to provide therapies and carry daily stress. Maria Rohan is a Registered Nurse at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. How do we fix this central vision issue? We don’t. Like Outside of the nursing field, Maria has dedicated anything else in life, we make weaknesses stronger. her life to working with children with disabilities, What you may not realize is that you are strength- trying to give the most opportunity possible. Hav- ening the central vision. When the child enters your ing worked with children with autism for 10 years world and brings you into his/her central vision, the and having the autism diagnosis in her family, Ma- child has chosen to use central vision. When he/she ria writes interactive workbooks for children with begins to play with you and you introduce the ABA this condition. She molds each workbook to their lesson, you are strengthening the central vision— musical voice pattern, their attention span, and we are just using the peripheral vision, which is the their likes. She currently sits on the PTO of STEPS strength, as a gateway to his/her weakness. The most Center for Excellence in Autism and continues to let important and effective part about these steps is that her love for the children plant seeds of movement. the child is choosing to play and learn versus being

vest ‘hugging’ straps built for secure feel, comfortable hip belt, adjustable sternum straps, ergonomic grab handle and clasps, durable bottom, water resistant zipper, earphone slot, communication device pouch

FIND US ON SHOP NOW @bustlebags www.bustlebags.com EDUCATION 8 Important IEP Decrees the School Owes You Now!

By Debbie GELINAS

While there are many available ‘tips’ for parents to read up on before going to their child’s Individualized Educational Plan (IEP meeting), the focus of this article will be what the school is obligated to provide you, the parent, prior to, during, and following the IEP meeting. Keep these important points in mind to ensure your child receives the quality education he/she deserves.

1. The IEP should be a collaborative istrators, direct and related services personnel, AND process you and your student (when appropriate) to work together to improve educational results for him/her. Your child’s IEP must be uniquely designed to meet The IEP is the cornerstone of a quality education and FIND US ON his/her needs and must be an accurately individual- should always be developed in a collaborative pro- @bustlebags ized document. The development of your child’s IEP cess of team discussion and decision-making. How- SHOP NOW creates an opportunity for teachers, school admin- www.bustlebags.com Autism Parenting Magazine | Issue 57 | 49 EDUCATION ever, most times the school will develop a draft IEP to be regularly informed of your child’s progress prior to the meeting. The draft should be provided and whether that progress is enough for him/her to to you a few days prior to the meeting, allowing you achieve the goals stated in the IEP by its annual time- to benefit more meaningfully during the IEP meet- line. These progress reports must be given to you at ing. least as often as neurotypical children’s progress reports are released. This means that you may specify 2. Steps to be followed prior to IEP in the IEP that you wish to have more frequent prog- meeting ress monitoring. As a parent, you have the right to Before you have the next IEP meeting, school staff have on-going progress monitoring data provided must: to you at appropriate intervals so that you are aware of growth or lack of growth in order to be in a better  Contact the participants, including YOU; position to advocate for revisions to the IEP. If a goal is mastered, it should be replaced with a new one. If a  Notify YOU early enough to make sure YOU have an opportunity to attend; goal has not been met over the course of a year, then perhaps you should be asking questions regarding  Schedule the meeting at a time and place instructional consistency and teaching methodolo- agreeable to YOU and the school; gies. Something has obviously gone awry!

 Tell YOU the purpose, time, and location of the meeting; 5. The IEP should be reviewed and revised at least every year  Tell YOU who will be attending; and Your child’s IEP is reviewed by the IEP team at least  Tell YOU that YOU may invite people to the once a year, or more often if you or the school ask meeting who have knowledge or special ex- for a review. Each year, the IEP should be revised to pertise about YOUR child. reflect actual progress being made. As a team mem- – You should never be discouraged from ber, you must be invited to attend these meetings. bringing a person of your choice. You can make suggestions for changes, can agree or disagree with the IEP goals, and can agree or disagree – You should be informed prior to the with the placement. If you do not agree with the IEP meeting as to who will be invited from and placement, you may discuss your concerns with the school and school district. Any re- other members of the IEP team and try to work out quired member of the team who is un- an agreement. There are several options, including able to attend must be excused by you. additional testing, an independent evaluation, filing a state complaint, asking for mediation, or filing due 3. The IEP must be complete and process. followed If you are confused or feel overwhelmed, consult The school has an ongoing responsibility to make an advocate and he/she will guide you through the sure that your child’s IEP is being carried out as spec- maze of special education. Believe me, it is a full-time ified in writing. You will be provided a copy of the job just keeping up with all of the changes and de- final IEP. Each of the child’s teachers and service pro- velopments, not to mention the emotional cost to viders should have access to the IEP and know his you and your family. or her specific responsibilities for carrying out your child’s IEP. This includes the accommodations, mod- 6. Your child must be reevaluated ifications, and supports that must be provided to At least every three years your child must be reeval- your child in keeping with the IEP. uated. The purpose is to find out if your child continues to be a child with a disability, as defined by 4. You must be regularly informed of IDEA, and to identify your child’s educational needs. progress Nonetheless, your child can be reevaluated more of- Your child’s progress toward his/her annual goals ten if you request it in writing. You may also share is measured, as stated in the IEP. You have the right any private evaluations completed on your student

50 | Autism Parenting Magazine | Issue 57 EDUCATION

The LRE is not always the general education classroom. Generally, a student’s level of need shapes what the individual placement should be. with the IEP Team. The school district is required to ceives the Notice of Refusal, if the parent continues take into consideration any and all private evalua- to believe that the requested service, support, or tions completed on your child. placement is required in order for their child to receive an appropriate public education (FAPE), they 7. Your child should be educated in the can respond by filing a state complaint, requesting least restrictive environment (LRE) mediation, or filing due process. The LRE is not always the general education class- You are an influential member of the IEP team. You room. Generally, a student’s level of need shapes what know your child very well and can talk about his/her the individual placement should be. Inclusion means strengths and needs as well as share valuable details that a student is receiving education in a general edu- for enhancing his/her education. You can offer insight cation regular class setting, reflecting natural propor- into how your child learns, what his/her interests are, tions and age-appropriate, heterogeneous groups in and other aspects of your child that only you know. core academic, elective, or special areas within the You can listen to what the other team members think school community. A student with a disability is a val- your child needs to work on at school and share your ued member of the classroom and school commu- suggestions. You can elaborate on what skills are be- nity. Teachers and administrators support universal ing transferred and what areas need a different, or per- education and have knowledge and support avail- haps more individualized, approach to securing ben- able to enable them to effectively teach all children; efits for your child. You can bring your child’s private students are provided access to technical assistance providers to the IEP Meeting so that they might offer in best practices, instructional methods, and supports suggestions. Remember that the team needs YOUR tailored to the students’ needs based on current re- membership and participation in order to carry out its search. In providing for the education of exceptional assignment, which is to prepare your child for further students, the district school superintendent, princi- education, employment, and independent living. pals, and teachers shall utilize the regular school facilities and adapt them to the needs of exceptional stu- Debbie Gelinas’ passion has been about making the dents to the maximum extent appropriate. world better for all of our children. Her background To the extent appropriate, students with disabili- includes advocating for children who have been ties, including those students in public or private in- abused and/or neglected, and for the past one and a half decades, her focus has shifted to being a voice stitutions or other facilities, shall be educated with for children who cannot speak for themselves due students who are not disabled. Segregation of ex- to disability and/or a condition that impacts their ceptional students shall occur only if the nature or holistic learning. Debbie is Founder of IEP Coaching severity of the exceptionality is such that education & Advocacy, an organization that strives to provide in regular classes with the use of supplementary aids professional and expert services to parents of chil- and services cannot be achieved satisfactorily. dren who have a need for a Section 504 plan and/ or who require an individual education plan, within 8. The school must provide Notice of either the public or private school settings. Debbie Refusal for refused services has been a wife for over 35 years to the father of Whenever a parent requests a specific service, place- four incredible blessings, and their fourth blessing ment, or support to be added to the student’s IEP, is now a teenager with Down syndrome. Debbie’s love of her work is evident, and she considers it a and the school based team refuses to provide it, the gift to participate alongside parents as their child’s school district is obligated to provide the parent Advocate. Please visit www.iepcoachingandadvo- with a Notice of Refusal. Often times, the notice will cacy.com and IEP Coaching & Advocacy’s Facebook be provided at the conclusion of the meeting, but page for solid information that can help you advo- other times it is sent later (generally within 10 school cate successfully for your child. days) following the IEP meeting. Once a parent re-

Autism Parenting Magazine | Issue 57 | 51 AUTISM SOLUTIONS Ways to Include Your ASD Child WHEN YOU HEAD TO CHURCH By Cara KOSCINSKI, MOT, OTR/L

Parents of children with special needs often fear being judged by others. It is hoped that the church will be an accepting environment; however, the reality is that the majority of church members with children who have special needs do not attend church regularly.

hurch holds great importance to many fam- It’s critical to remember that Sensory Processing Dis- ilies, yet the thought of a sensory meltdown order (SPD) is beyond a child’s conscious control. In causes many to stay home. Why? Tradition- fact, many sensory responses are due to chemical really, churches are reserved and have times actions. When a child experiences a fight or flight re- of quiet prayer and reflection. Unexpected action, stress hormones such as cortisol and adrena- noises and movements from the congrega- line are released. The goal for the child at that point tion may cause distraction and elicit stares is safety. Sensory information is taken in from touch, Cfrom others. While church should be a place of grace smell, vision, hearing, taste, vestibular, internal or- and forgiveness, we are often fearful that our chil- gan, and proprioceptive receptors. Vestibular recep- dren’s behavior may be frowned upon. tors are responsible for detecting changes in posi-

52 | Autism Parenting Magazine | Issue 57 AUTISM SOLUTIONS

Many churches offer a buddy system. This is a free program that can be easily implemented in your church. If you don’t have a buddy program, start one! It’s easy and FREE. tion, whether it be in space, balance, or movement. unexpected. Allow children to hold a ‘transi- Proprioceptive receptors provide information about tion item’ or a familiar item when moving to body awareness, position, and posture. Interocep- the next location or place. Something famil- tion involves the internal regulation responses in iar often helps to comfort children with SPD. our body, such as hunger, thirst, blood pressure, and even toileting urges. Many times, unexpected stim- 4. Create a social story uli cause panic reactions. Social stories and ‘about me’ books always provide children with self-awareness and build Here are some tried and true tips to help both your confidence. Take photos of the church and child and your church family: the rooms your child will visit. If you’re unable 1. Explain what Sensory Processing Disorder to visit the actual building, go to the church’s means website for a virtual tour. Print out photos to We often hide our child’s disability due to fear create a book about church. Parents are of- of being judged. It’s our hope, though, that ten surprised at their child’s creativity. Include fellow church members will offer kindness and common prayers and hymns as well as musical grace. Explain what SPD means and offer some instruments often heard in the service. common scenarios in which your child may experience fear or a meltdown. Offer a help- 5. Make a safety plan for escape or meltdown ful website, or print out common symptoms As with any situation, an ounce of prepara- children with SPD demonstrate. Explain what tion is worth a pound of cure. Prepare a ‘safe’ your child’s meltdown entails and teach a few place or room and practice walking to the techniques that usually help him to relax. room when your child is feeling safe. Show him/her what the room looks like and create 2. Find a church buddy an ‘I need a break card’ to show church staff Many churches offer a buddy system. This is a or teachers when he/she starts to feel upset. free program that can be easily implemented in your church. If you don’t have a buddy pro- 6. Make a special ‘church box’ gram, start one! It’s easy and FREE. Find an old- Reserve a special ‘church box’ with fidgets and er student or kind church member who would items of high interest for your child. ONLY use be willing to be your child’s buddy for church this box at church so that it remains novel and time. Let them get to know each other prior to exciting. Absence truly does make the heart the service and make sure that the buddy is grow fonder, and knowing what’s in the box al- familiar with SPD and your child’s ‘safety’ plan. lows children to look forward to playing with it.

3. Ease transitions with visuals 7. Make special adaptations for your child Add visual schedules and transition warn- Knowing how to make accommodations and ings to the Sunday school program. We all adaptations for students with SPDs makes for utilize schedule books and planners to or- the difference between a good day and a day ganize our time. A simple schedule of activ- filled with paralyzing anxiety. Try a weight- ities written on the chalkboard or a piece of ed lap pad or a stuffed animal with poly pel- paper can help to ease transitions. Know- lets sewed into its paws. Weighted items can ing what is coming up next is critical in order comfort children. Add a calming scent such as to help children who are often fearful of the lavender or vanilla if your child prefers scents.

Autism Parenting Magazine | Issue 57 | 53 AUTISM SOLUTIONS POETRY CORNER

8. Allow your child to eat or chew Snacks such as dehydrated fruit or bagels give heavy work input to the oral (mouth) muscles. Allow children to eat chewy snacks or wear chewable jewelry, such as Chewigems or Chewelry. Many products are beautiful as well My Fear as safe for children who place items into the mouth. There are even dog tags available for boys! Why am I afraid of spiders? 9. Add a movement break prior to church Why am I afraid of losing? “Brain breaks” release excess energy. Focusing for long periods of time can cause a build-up of Why am I afraid of you? energy. This is especially true for younger students or those who have difficulty attending to Because what I fear most of all is the task. The build-up of energy can cause anxi- judgment, an overbearing wall of ety. Fidgeting results and, oftentimes, children hatred and disbelief, a monster with are told to be still. The brain can actually move into “overload” and may cause periods of zon- razor teeth made from tainted gold ing out. that makes us all back down in fear, the same thing that turns our dearest Remember that church can be a safe place for children with special needs. Oftentimes, church mem- friends into our worst enemies, so don’t bers confuse bad behavior with SPD, so information be afraid. about your child is a powerful tool to help with grace and understanding. With a little practice, everyone If someone judges you about the way can help children to worship in a comfortable set- you dress, ignore them. ting. If someone makes fun of how you are, remind them that’s how you were made.

Cara Koscinski obtained her Mas- …because that’s how you defeat the ter’s Degree in occupational ther- beast with teeth of tainted gold. apy in 1997. She is the parent of two children with autism and By Quinlan Kuehl SPD. Cara is known as ‘The Pock- et Occupational Therapist,’ has Quinlan Kuehl is 14 years old written four published books, and and a freshman in high school has created two CDs for children in Illinois. He likes video games, with a fear of loud noises. Additionally, she speaks Nerf guns, magnets, and play- at conferences and for Future Horizons, serves as an ing the piano. Quinlan was OT Advisor for Autism Asperger’s Digest, and teach- diagnosed with mild autism es continuing education courses in the US and the at age three and had a full time para for UK. Information about Cara and her books is avail- school from 1st grade until 7th grade. He able at The Pocket Occupational Therapist website has come so far and no longer needs a at: http://www.pocketot.com. para. Quinlan is currently a straight A student, and his favorite classes are Robotics, Biology, and Algebra.

54 | Autism Parenting Magazine | Issue 57 CONTRIBUTE Autism Parenting o you have a story to share? Perhaps you have information that would be helpful to other parents with ASD kids and want to share the info. Why not Magazine share your story/info with us? Autism Parenting DMagazine wants parents and caregivers to unite to help each other. Our writing guidelines are simple.

Ideally, the topic needs to be relevant to the magazine. Any topic that is related to parenting a child with autism or being a person on the spectrum that is parenting would be a relevant topic. Released on a monthly basis, the magazine features the latest news, tips, and advice for parents of children with autism. With helpful advice that covers subjects like: behavioral tips, sensory processing issues, mitigating meltdowns, special education needs and getting access to services, we are con- fident that the magazine will become a must read for parents of children with autism.

We do ask that you submit a topic, title or idea of the article to make sure that someone hasn’t already covered the same thing by emailing the editor. You may use a blog post that you have posted on your blog already.

THE ARTICLE SHOULD BE A MINIMUM OF 300 WORDS. FONT DOES NOT MATTER. WE DO ASK THAT IF YOU USE SOURCES TO PLEASE CITE YOUR SOURCES AT THE END OF YOUR ARTICLE TO AVOID PLAGIARISM.

At the end of your article please include a few sentences about yourself and your writing or autism related background with links to your site or products.

Please note that we cannot post your article without a small bio. So please do not forget to send a few sentences about yourself with your article.

If you have something interesting or informative to share please email [email protected]. PERSONAL NARRATIVE Ways Serving on the Board of ANDERSON CENTER FOR AUTISM Has Changed My Life Forever

By Eric GORMAN

When people meet me, they pretty quickly realize I’m an engineer. It has been a big part of my life since I graduated from the University of Notre Dame and got a job at IBM in East Fishkill, NY. I studied electrical engineering and was fascinated by power. I really didn’t like computers and only used them when I had to. IBM hired me as a facilities engineer installing 2,000-ton chillers, and I loved every minute of it.

ne day, I discovered a whole warehouse full to computers. For all my misgivings, it turned out of new computers that no one used. I made that I loved computers, too. a case for needing one (I lied a little), and after figuring out how to make it work, I was After successful stints with IBM in their Consulting soon using it to do my estimates. Word got Group working for aerospace and defense clients around, and other folks had me set them up (including heavy-hitters like Honeywell Grimes Aero- Ofor them. It was my accidental introduction space) and then steering Chase Manhattan Bank 56 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE Around 2003, a friend and colleague, Gregg Paulk, came to work at Anderson Center for Autism. In 2008, he secured an invitation for my business partner and I to tour Anderson’s Staatsburg campus and school—that was when I realized the extraordinary work being done there. through Y2K, my business partner and I formed our them. Working with CEO Neil Pollack during my ten- own company, IES Inc., based in Poughkeepsie. Al- ure on the board has been an honor. He is retiring most 20 years later, it has proven to be a fascinating in 2017, and Patrick Paul, the current COO, is poised and rewarding endeavor. to take the seat as CEO. I have found Patrick to be a wise mentor during my years on the board. Neil Around 2003, a friend and colleague, Gregg Paulk, has left a great foundation, and Patrick will build on came to work at Anderson Center for Autism. In it over the next decade. 2008, he secured an invitation for my business partner and I to tour Anderson’s Staatsburg campus and A key issue we have been discussing over the past school—that was when I realized the extraordinary two years is measuring the Quality of Life experi- work being done there. Here was an organization enced by the individuals we serve. As an organiza- that worked with individuals who had profound tion, we have become deeply committed to opti- challenges, and yet the atmosphere was so positive. mizing the quality of life, but to do so, we needed I could see that the quality of life of the individuals metrics. How can we tell, with some of the toughest was high, and in many cases, those lives were filled cases in the State of New York, if a person’s life is im- with joy. The staff was amazing. And, being an engi- proving? Working with the clinical and administra- neer, I could see that they were working efficiently tive staff, we have started using the San Martin scale and effectively. Something came over me—a kind of to measure quality of life in a number of different do- passion. I knew that I wanted to become involved, so mains. We have all witnessed transformations in the I asked if I could get on Anderson’s board. I was inex- participants in our programs for youth and adults. perienced and didn’t know that you don’t ask to join Now we can measure it. a board—you have to be asked! However, my enthu- siasm began a conversation with David Melby, who As a board member, we are required to visit a part of was then Board Chair of Anderson Center for Autism. the agency once a year. So over the years, I’ve visited Over the next year, I came to understand what board Anderson’s school, dayhab-without-walls, and IRAs work entailed, and in 2009, David nominated me for (Independent Residential Alternatives), and over the a board seat and I was elected. course of these visits, I have seen the same people over and over again. I can see the progression— it’s If you have never sat on a nonprofit board, it’s im- so obvious that what Anderson is doing is working. portant to first learn what type of board you are join- The results can be very moving, even to an engineer ing. A significant aspect of Anderson’s board is that like me. it is a ‘generative’ board. We don’t just listen to reports and rubber stamp them. We look at the broad- Last year, I was visiting a home for five of our adult er issues and future challenges and set out to solve men in Newburgh, NY. I met the director, and al-

A key issue we have been discussing over the past two years is measuring the Quality of Life experienced by the individuals we serve.

Autism Parenting Magazine | Issue 57 | 57 PERSONAL NARRATIVE

This year I have been elected to serve as Chair of the Anderson Center for Autism Board, and we face new challenges, particularly in the transition to managed care. It falls to the board to make this transition efficiently and with due consideration. though some of the residents were going out to get way to get to know an organization to see if their ice cream, two men, Chris and Kyle, who were just mission ignites your passion. You do not need to be finishing their dinner, offered to give me a tour. They a board member to work on a committee. We wel- also politely offered me dinner, which I politely de- come everyone with a commitment to making a dif- clined. Out on their handsome deck, Kyle said, “Do ference. you like our deck?” I said I did and mentioned that because it was plastic, it was likely to be very dura- If you have professional skills—such as accounting ble. Kyle asked me, “What’s durable?” I explained, or legal—you can be extraordinarily useful to a non- and we continued the tour. Then Kyle said, “What profit board. Perhaps you know lots of people in your do you think of our home?” I replied that it was very community and can encourage them to support the nice, well kept, and I said, “You must be very proud of organization through sponsorships, donations, or it.” Kyle responded, “What’s proud?” I explained that helping to organize events. Again, you will become it is a feeling. In that moment, I realized how much a valued asset to the organization. In time, you may we take for granted. For me, that’s the reward: see- feel that you would like to take your engagement a ing quality of life improvements and how Anderson’s step further and perhaps consider serving on their work is transformative. It is what makes being on An- board. Let them know that you are interested and derson’s board rewarding. I get that feeling of pride see what happens. Board service is a responsibility, when I am working on Anderson’s behalf. but it is immensely rewarding. This year I have been elected to serve as Chair of the I think you will find that serving your community Anderson Center for Autism Board, and we face new through committee or board service will enhance the challenges, particularly in the transition to managed quality of your life, as well as the people you serve. I care. It falls to the board to make this transition effi- know this, because that is what has happened to me. ciently and with due consideration. We must make the change, and at the same time, help Anderson continue to move forward, innovate, and remain Eric D. Gorman is the co-founder, Executive Vice strong. President, and Chief Operating Officer of Integrated Enterprise Solutions, Inc. (IES) in Poughkeepsie, NY. To do this, we will need more board members. As I IES is a computer consulting and integration ser- write, I am thinking of the parents, family, and friends vices firm specializing in providing professional ser- of individuals with autism who are reading this mag- vices for Information Technology projects in numer- azine. You may not have considered working on the ous industries, including Financial, Not-for-Profit, board of a nonprofit organization. But if you are like Manufacturing, and the Semi-Conductor industry. me and have an organization whose work you re- A graduate of the University of Notre Dame, Eric spect—and you feel that you have an expertise to has extensive industry experience implementing offer their board—maybe it is time to investigate computer integration projects, including multi-mil- whether they need volunteers for committees, or lion dollar projects with development teams spread consider expressing an interest to be on the board across multiple companies. He is Chair of the Board itself. Working on a committee (fundraising, working of Trustees for Anderson Center for Autism in Sta- events, volunteering, helping with client services, or atsburg, NY. being a part of community outreach) is a very good

58 | Autism Parenting Magazine | Issue 57 RATE US ARE YOU ENJOYING Autism Parenting Magazine

We would really love it if you would give us a review. Not only does the feedback help us feel like we are doing a good job but comments and positive reviews also help us to grow the magazine.

CLICK HERE CLICK HERE WHAT'S NEW ON THE BOOKSHELF? New Book Shares Ways to Begin the New Year with a Fresh Start

High-Functioning AUTISM and DIFFICULT MOMENTS: Practical Solutions for Reducing Meltdowns

By Brenda SMITH MYLES, PhD and Ruth ASPY, PhD

egin the new year with a fresh start and new strategies for difficult moments and re- Brenda Smith Myles, PhD, a consultant with the ducing meltdowns. This book offers tried- Ziggurat Group, the National Professional Devel- and-true solutions to minimize and avoid opment Center on Autism Spectrum Disorders, the often-frightening circumstances that and the Education and Treatment Services Proj- surround the rage cycle, not only for the ect for Military Dependent Children with Autism, child with high-functioning autism, but has written over 150 articles and books on autism Bothers in the environment as well. A highly practical spectrum disorders. Brenda has made over 500 and user-friendly resource, High-Functioning Autism presentations all over the world and has served and Difficult Moments focuses on the reactions of the as the co-chair of the National ASD Teacher Stan- adults around the child. The authors take the reader dards Committee. In addition, she was acknowl- through the stages of the rage cycle and emphasize edged as the second most productive applied re- searcher in ASD in the world from 1997 to 2004. the importance of utilizing the teachable moments before and after a rage episode. Ruth Aspy, PhD, is a licensed psychologist in private By joining forces in this latest endeavor, Smith Myles practice with the Ziggurat Group. Dr. Aspy special- and Aspy combine practicality and useful informa- izes in assessment and intervention for individuals tion for not only educators and therapists, but also with autism spectrum disorders. She is co-creator parents who, despite their best efforts, can struggle of a comprehensive model of intervention. Along to understand and find meaningful ways to be sup- with Dr. Barry Grossman, Dr. Aspy has written The portive. Ziggurat Model, winner of the 2008 Autism Society of America award for outstanding book of the year. ISBN: 9781942197249 Dr. Aspy speaks internationally. She has experience For more information visit: www.aapcpublishing.net in both the clinic and school settings.

60 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE The Awesome Rewards of Teaching James

By Lauren RADER

This is what I know: I love teaching James. It was about six years ago that I was asked to teach James*. He was 25 at the time. I’d never known, much less taught, anyone with autism before, but his mother was so sweet and so excited by the idea, I thought I’d give it a try.

n our first day, I spread a huge sheet of butcher paper over the studio table. I fig- ured James would probably like to move some pastels across the long, wide page. I imagined his movements would be big and expansive. But instead, he moved the colors around in the area directly in front of Ohim. I watched. I was learning from him. And he was learning to trust me. He was so delighted as I showed him how to move the pastels all the way across the length of the big paper. I could see, even on that very first day, that making art would make James happy. Colored pencil drawing by James Six years later, it’s been an interesting ride. There have been a few bumps along the way, but our work by showing him, even on his own paper. I wasn’t together has been of real value to him and to me. comfortable doing this at first, but I’ve grown to I’ve come to love working with James over the years. enjoy it. Sometimes, we take turns. This way, I Here are a few reasons why: teach him lots of different ways of mark-making without ever having to say a word. 1. We speak in art. James rarely talks to me, and truthfully, it’s a relief. Sometimes I’m just talked 3. I love how art calms him. James begins every out. We simply make art together, with music as class drawing in a huge sketchbook. I love that our soundtrack. He loves it when I work with him he gets to make the choice of media. He usu- on the very same piece, and I do, too. We work ally chooses colored pencils, and he’s always together joyously. It’s collaboration in the purist careful to use every colored pencil in the box. form. We don’t have to talk. We speak in art. I love these free-form pieces, each one similar and different. I love that this is total- 2. He teaches me. It has always been my practice ly and completely James—no advice or help to respect the sanctity of my students’ work. I from me. If James comes into the studio feel- rarely touch their art with my own pen or brush. ing agitated, the drawing begins to calm him. But for James, my hands-off method wasn’t that However, nothing soothes him like painting. As he effective—I could see that I could best help him swirls the paint on the palette and brushes color

Autism Parenting Magazine | Issue 57 | 61 PERSONAL NARRATIVE

His drawing skills have expanded. James and I have worked in lots of media—wood, printmaking, pastels, inks, stencils, scratchboard, clay… We’ve always drawn, but a few months ago I asked him to draw a vase from life.

onto the canvas, I can feel his energy completely calm. I know the feeling—it’s the same for me. We’re very much alike in that way—we both love to paint, love to mix colors, love how the brush feels as it moves around the canvas. We are kin- dred spirits.

4. He’s learning. Because James doesn’t say much, it’s not easy for me to discern what he’s really taking in. But then times like yesterday happen. I said, “Let’s make green, can you get the paints?” He came back with two tubes of paint: cadmium yellow light and cerulean blue. That’ll make you some green, and that makes me happy.

5. His drawing skills have expanded. James and I have worked in lots of media—wood, printmaking, pastels, inks, stencils, scratchboard, clay… We’ve always drawn, but a few months ago I asked him to draw a vase from life. He blew me away with his attention to detail and careful replication of form, line, and color.

Since then we’ve done lots of still-life drawing. I’m so proud of how he’s doing. I remind him, “slow and controlled,” and he repeats my words as he slows and studies. Check out this video of him drawing. Now I can see what he’s seeing. Isn’t that wonderful?

62 | Autism Parenting Magazine | Issue 57 PERSONAL NARRATIVE

We all want to feel proficient and good about the The joyous ability of art to heal and calm will always work we do in the world. James loves to make art, amaze me. I’m so grateful that as human beings, and he’s proud of his work. A couple of years ago, we’re all born with this creative instinct. No matter James had a show of his paintings at Glen Echo’s Yel- who you are or how you create, it’s an unparalleled low Barn in Bethesda, MD, where he sold quite a few gift of being human. of his pieces. Pretty fabulous. *James is a pseudonym to ensure privacy.

Lauren Rader is a lifelong artist and art educator. Her new book, Studio Stories, Illuminating our Lives through Art, offers intimate real-life portraits of lives deepened through creativity. Beginning as a teen arts-and-crafts counselor at a camp in the Poconos, Lauren has introduced generations of children to the wonders of art. In 2005, she opened her art studio to adult students, offering classes for women called Releasing the Creative Powers Within. The women’s personal and collective journeys into creativity became the inspiration for Studio Stories. Lau- ren’s works in stone, clay, oils and pastels have been exhibited in California, Colorado, Maryland, Massachusetts, Texas, Washington, D.C. and the U.S. Embassy in Fiji and are in numerous private and corporate collections. She currently resides in Bethesda, Maryland. You can read more about Lauren’s art, in-studio and online teaching, and Studio Sto- ries at: www.LaurenRaderArt.com. Studio Stories, Illuminating Our Lives through Art

Autism Parenting Magazine | Issue 57 | 63 SUBSCRIBE TO Autism Parenting Magazine for the price of cafe latte per month

 Get helpful parenting tips

 Find useful techniques for working with sensory issues

 Learn the best ways to gain access to services

 Get the latest news from around the world

 Stay connected with the latest techniques and treatments

 Gain access to monthly Q&A from parents just like you

All of this delivered straight to your iPad automatically every month GET STARTED AND CLICK THE SUBSCRIBE BUTTON BELOW NOW! SUBSCRIBE AUTISM NEWS

New Study Highlights the Importance of Fathers in the Care of Children with Autism

ducation, social care, and health services need to The project examined 306 online questionnaires become more aware of the important role that fa- completed by fathers (biological, adoptive, foster, or thers play in the lives of children with autism, ac- step-fathers) of children with a diagnosis of autism, au- Ecording to research by Leeds Beckett University. tism spectrum disorder (ASD), or Asperger syndrome in the United Kingdom. Twenty-five of these men were The new research is one of the largest studies to have later interviewed to explore issues in more depth. been undertaken with fathers regarding autism so far. Carol explained: “Fathers can often be seen as the It was led by Carol Potter, a Senior Lecturer within the ‘invisible parent’ and, as such, are rarely included in School of Education and Childhood at Leeds Beckett research or family support provision, with services University, and it was funded by the Leverhulme Trust. being generally much less aware of either their con- It has been published in the latest edition of the Jour- tribution to family life or their needs for support. nal of Intellectual and Developmental Disability*. This may be especially the case in relation to fathers

Autism Parenting Magazine | Issue 57 | 65 AUTISM NEWS

More fathers spent time engaged in play than any other activity, although just under half had received no relevant training in this key area. of children with disabilities. This is unfortunate be- opting to work fewer hours to take on greater caring cause research over the last 30 years has found that responsibilities. positive father engagement, alongside the input of mothers, leads to a range of educational and psy- When asked about stress, more than half of fathers chological benefits for children.” reported feeling stressed ‘quite a lot’ or for ‘most of the time.’ The major causes of stress were: worry The study investigated paternal engagement in the about the future, managing children’s behavior, not care, play, and education of their children with au- getting a break, concern about family finances, not tism, finding that many men were significantly in- enough services, and lack of rest caused by children’s volved in these areas, most usually in close collabo- sleeping problems. Two of the main approaches to ration with mothers. Half of the fathers were mainly, coping with stress were cited as ‘focusing on the or equally, responsible for their children’s daily care positives’ and ‘coming up with ideas for what to do.’ routines, including morning and bedtime routines and the management of sleeping problems. By far, the greatest source of help for most fathers (over 80%) came from their partners, with other sup- More fathers spent time engaged in play than any port coming from children’s grandparents and oth- other activity, although just under half had re- er children in the family. Just under half of fathers ceived no relevant training in this key area. Three received no support from paid workers, and eight quarters of men played or spent leisure time with in ten fathers believed that professionals working their children every day or several times a week. with their children did not sufficiently recognize Some of the most frequent play and leisure activi- the importance of their parenting contribution. ties reported were rough and tumble play, looking at books, computing, and going for walks. Despite sometimes experiencing challenges, fathers identified a number of positive aspects to Many fathers also played a significant role in their their parenting role. Fathers valued the individu- children’s education and learning, with nearly 40% al personal qualities of their children with autism having helped with homework ‘many times’ during and the often strong emotional bond they experi- the previous year and more than half attending a enced with them, as well as their own nurturing role. number of school meetings during that time. Carol said, “This study shows that professionals need Six in ten fathers were satisfied or very satisfied with to become more aware of the important role that fa- levels of involvement with their children, while one thers play, alongside mothers, in the lives of children in five were not. By far, the most significant obstacle with autism, and that they need to develop more to involvement in education, in particular, were the effective ways of supporting both parents. A more demands of employment. gender-differentiated approach to service provision is needed, where the potentially differing needs of Fathers made a key financial contribution to fami- fathers and mothers are taken into account.” ly life, with 85% of men in paid work, of whom 62% worked full-time. Fathers were asked if having a Potter, C.A. (2016) Father involvement in the care, child with autism had affected their employment in play and education of children with autism. Journal any way. Nearly half had changed their working pat- of Intellectual and Developmental Disability. ISSN tern to some extent (to part-time work, shift work, 1469-9532 (In Press). or self-employment) so they could be more involved For more information: http://www.leedsbeckett. in the everyday care of their children, while four in ac.uk/carnegie-school-of-education/ ten men reported some loss of income, often due to

66 | Autism Parenting Magazine | Issue 57 APPLIED BEHAVIOR ANALYSIS Easy Ways to Help your Child with ASD HANDLE DISAPPOINTMENT By Sarah KUPFERSCHMIDT, MA, BCBA

Disappointment is all around us, unfortunately. It is not something that we can avoid. How it is manifested in our lives is unique to each person. We cannot always have what we want when we want it.

s a parent, we often do things to help our children avoid experiencing disappointment, but there will be times that we cannot shelter them from it. Because we cannot control everything in our world or in our children’s world, and because it is inev- itable that our children will encounter disappointment,A it is critical that we help empower our kids with skills to cope with it. I have worked with many children and teenagers with autism who have never been taught how to cope with being told, “No, you cannot have that right now,” or who cannot handle it when the Wi-Fi connection for their tablet or computer is too slow or does not work. As a result, they end up engaging in challenging behavior when things do not go their way. Disappointment will eventually rear its uncomfortable head for all of us, so it is really important we set our kids up for success by teaching them how to cope with it. Here are some tips to help your child with autism deal with disappointment: Teach breathing and mindfulness Using visuals and verbal prompts, you can teach your be very long when you first begin. Over time, as your child to focus on guided breathing when he/she is child learns to sit and attend to a guided meditation, becoming uncomfortable. It is better to teach these you can gradually increase how long he or she sits kinds of skills before he/she starts to show anxious and do it on a given day. When I first started doing behavior and then, once it can be done well during this with my kids, it was for three minutes tops—now calm situations, you can teach your child to use it they ask to do a “meditation” and will sit for up to 15 when experiencing something more uncomfortable. minutes and attend to the guided meditation. It is also a good idea to infuse short mindfulness activities into your child’s daily routine. There are lots Expose your child to novel situations of resources online that are geared toward teaching For some children with autism, variability and kids mindfulness. The key is to make sure your child changes in the environment may be anxiety-provok- is able and willing to participate. These should not

Autism Parenting Magazine | Issue 57 | 67 APPLIED BEHAVIOR ANALYSIS ing. When I talk about exposing your child to these teaching program, a self-monitoring system would uncomfortable circumstances, it is important to re- be a great addition to teach the child to notice when member to start very small and gradually increase he/she do well and when a little more practice may the expectation. For example, one five-year-old boy be needed. that I work with would whine and fall to the floor if the toy he was playing with was not played with in Flexibility is one of those really important skills a particular way. In order to help teach him to be- that not everyone thinks about including in a good come more flexible, I would intermittently change teaching program. This is unfortunate, because if the way he was playing with the toy for a second and your child with autism is able to tolerate changes then give him back control of the toy. Over time, he and be more and more flexible during interactions began to tolerate changes in how the toy was ma- with others, it will greatly improve his/her quality nipulated and even began to play with it in different of life. These are just some of the tips that I recom- ways himself. The key was that I exposed him to nov- mend when attempting to help your child with au- el ways to play with things in a safe way that was not tism become more flexible. I would love to hear your too demanding. thoughts on this very important topic! Reinforce toleration   None of what I described above would have been Sarah Kupferschmidt realized possible if I had not reinforced instances of tolera- that Behavior Analysis was her tion. As with any new skill, when it is emerging, it is calling when she first started really important to provide reinforcement for it. So, working with children with au- whenever he would tolerate the toy being manipu- tism in 1999. Once she discovered lated in some novel way, I would praise him and then its effectiveness and the impact it give him back the toy. He learned that by using his had in helping children with au- words, he could control how it was manipulated in tism and their families, it inspired her to pursue a most cases, but also that he could tolerate changes Masters of Arts in Psychology with a specialization in how he was used to manipulating it. in Behavior Analysis from the University of Nevada, Reno. She is also a Board Certified Behavior Analyst Make it fun (BCBA). Not only does Sarah enjoy working direct- One of the ways I work on teaching flexibility to some ly with children with autism, she’s also very pas- of my clients with autism is to contrive little games sionate about empowering others with the most here and there that are fun. For example, one of the effective tools to teach children with autism. She little boys I work with enjoys kids’ songs, and I will has been training staff and clinicians and coaching sing with him throughout his session. Every once parents on how to do this since she started. She is and a while, I may change a word or two in a familiar also passionate about the science and research be- song and we will continue singing it with some mi- hind the tools that she advocates. In partnership nor tweaks. Initially, he would shake his head and say with Brock University, Sarah is currently involved in “no,” but now he tries to find absurd ways to change a research project that involves the evaluation of a song and make it fun. It all goes back to my last a parent-training package that will help empower point about reinforcement—making myself a rein- parents with tools to teach his/her child with au- forcer of change during the child’s favorite activities tism important safety skills. She has been a Part- makes him more likely to tolerate change in future Time or Adjunct Professor since 2005, teaching ABA situations. Over time, it is important to let the child courses. Sarah also regularly presents workshops practice changes with other people as well. to parents, therapists, and educators on a variety of topics related to teaching or working with individu- Teach your child to notice his/her own als with autism. Sarah is a Huffington Post Contrib- success utor, a TEDx speaker, and was named Top Safety Contributor for Autism Parenting Magazine in 2014 It’s a good idea to have a daily journal that your child and Top Behavior Analysis Writer for 2015. Visit her can use to write down his/her success on any giv- site: sarahkconsulting.com en day. If it is something that we are including in a

68 | Autism Parenting Magazine | Issue 57 FINANCIAL PLANNING

Is the ABLE Account the Right Savings Tool for My Child with Special Needs?

By Ryan F. PLATT, MBA, ChFC, ChSNC

Question: It is the beginning of a new year, I want to start saving for my child’s future, and I have heard quite a bit about the ABLE Accounts. Is an ABLE a good account to begin saving in for my child’s future? — Abigail

aving for your child’s future is a great step in helping him/her live a full life. An ABLE account is certainly one option that is available for you to use; however, it does have some drawbacks that you should be aware of be- Sfore jumping in. The ABLE Act (Achieving a Better Life Experience) paved the way for the ABLE account, which allows an individual who was diagnosed with a disability before the age of 26 to have an account in his/her name that can have more than $2,000 and still qual- ify for needs-based government benefits such as SSI (Supplemental Security Income) and Medicaid. The passage of ABLE has allowed individuals with a diagnosis to have savings in his/her own name and feel a financial sense of accomplishment that was not available before. With that said, there are some downsides to the ABLE account which may deter you [as a parent] from saving your money in an ABLE account. The disadvantages are:  Annual Funding limitations based upon the annual gift tax exclusion amount ($14,000 in 2016)  Only one account per qualifying individual  Maximum account value of $100,000 before SSI is suspended (a monthly income that is used for many individuals to fund housing and other necessary life-long supports)

Autism Parenting Magazine | Issue 57 | 69 FINANCIAL PLANNING

 Payback Provision to Medicaid at the passing  Employee benefits for parents of the individual with the disability (meaning any remaining money in the ABLE Account, at  Business owned by parents death, will be susceptible to government pay-  Communication of your plan. This type of plan- back) ning involves your entire family and others due  Withdrawals can only be taken for Qualifying to your child’s continued support needs even Disability Expenses and only for the benefit of when you are gone, which means you must your child. have a communication strategy to ensure those people know the plan. Although an ABLE account may be a tool that you use for your child, it most likely will not be your first Special Needs Planning does include a number of choice due to the drawbacks listed above. It is im- areas to consider, which is why it will behoove you portant to ensure flexibility when saving for your to seek out specialists before you begin saving in an child’s future, and to understand that as you save, ABLE account or any other account for that matter. your entire family will continue to have financial Please feel free to find additional resources at http:// needs. Once you place savings in an ABLE Account, aspecialneedsplan.com/resources/. that money can only be used for the benefit of your child, which means if you lose your job, or your roof needs to be replaced, you must have savings built up For more information on how to prepare for the in other accounts to satisfy those needs. future, be sure to contact a financial advisor who specializes in serving families with special needs. A As you consider saving for your child’s future, I sug- Special Needs Plan is driven by what they call Un- gest you change the word “saving” to the word “plan- leash L.I.F.E.™—L.I.F.E. meaning Lasting Indepen- ning.” Your child’s future will require more than one dence For Everyone™. This is accomplished with tool to ensure a lifetime of support, and for that rea- education, action, and support in the creation, im- son, having a plan (and not just savings) will serve plementation, and continued monitoring of a spe- your child, you, and your family in a more complete cifically-designed lifelong and integrated plan for manner. As you begin planning for your child, it is your family of parents, caregivers, your loved one critical to plan with the understanding that your with special needs, and their siblings. child’s planning must be coordinated with your own future planning, because the choices you make (es- 6000 Fairview Road, Suite 400 pecially on which accounts you use to save your Charlotte, NC 28210 money for your future) will have an impact on the 704-557-9637 amount that you are able to provide for your child. www.aspecialneedsplan.com A comprehensive plan will include, coordinate and Ryan F. Platt is a registered representative of and integrate areas such as: offers securities, investment advisory, and finan-  Legal (Special Needs Trust, will, powers of at- cial planning through MML Investors Services, LLC. torney, etc.) Member SIPC (www.sipc.org). A Special Needs Plan is not subsidiary or affiliate of MML Investors Ser-  Financial (savings, insurance, investments) vices, LLC or it affiliated companies. This article is not a recommendation or endorsement of any  Taxes (certain accounts when left to a Special products. Needs Trust could be levied with a nearly 50% tax, while others will not be taxed)  Government benefits–protecting these benefits for your child’s lifetime support needs

70 | Autism Parenting Magazine | Issue 57 Healthy Eats courtesy of

Warm Chicken and By Elouise ROBINSON, Bacon Salad Autism Food Club

with Honey and Mustard Dressing

simple warm salad, works great to use Aup left over chicken.

Ingredients METHOD • 3-4 cups chicken breasts, diced 1. If the chicken’s not already cooked, poach it • 4 rashers of smoked streaky gently in a little water. Poaching a chicken bacon or smoked pancetta breast takes about 10-12 minutes, depending • ½ lemon on thickness; • 2 teaspoons poppy seeds • 2 teaspoons honey 2. Grill the bacon until it’s as crispy, or as you pre- • 1 tablespoon wholegrain mustard fer; • 1 tablespoon olive oil 3. Finely grate the peel of a fresh lemon into a • ¼ cup dried apricots, cut into large bowl, then juice the lemon into the same quarters bowl; • ½ clove of garlic, minced • 4 cups lettuce leaves 4. Add into the bowl the poppy seeds, mustard, • ¾ cucumber honey, olive oil, and apricots;

5. Put out your leaves in a pile on each plate or Optionally, you can make it into a more filling salad bowl, add the cucumber and any other top- by adding some extra chopped up ingredients such ping you wish; as an apple, 4 stalks of celery or scallions. 6. Scatter the chicken and bacon over the salad; 7. Pour this dressing over the salad and serve.

Autism Parenting Magazine | Issue 57 | 71 Autism Parenting BACK Magazine ISSUES

PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY

Autism Parenting Issue 41 Magazine

THE JOY OF HOLIDAY COOKING WITH YOUR ASD CHILD

5 WAYS TO FESTIVITIES TO WHAT YOU NEED PREVENT BRING YOUR TO KNOW ABOUT WANDERING FAMILY TOGETHER HOLIDAY SWEETS CELEBRATING FAMILY PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY

Autism Parenting Autism Parenting Autism Parenting Autism Parenting Autism Parenting Issue 45 Magazine Issue 47 Magazine Issue 49 Magazine Issue 51 Magazine Issue Magazine Making PoPular Video gaMes good for kids with asd UsIng sImple InnovatIve ReWaRDs WAYS TO teaching Your child Ways to Deal with asd the Value of MoneY to get SUPPORT WIth asD anD to school A CHILD WITH 5 Simple WayS toe-WalkIng to prevent toP 5 social skills tiPs on tIme ASD DURING Wandering for teens with sPecial A DIVORCE needs hoW to make ConneCting Celebrating meDIcal vIsIts With your Your Child’s easIeR WIth aUtIsm HELP YOUR CHILD HOW TO Child through graduation SLEEP WITHOUT mineCraft MEDICINE RECOGNIE the speCial THE MEDICAL ChooSing the bond between iris graCe and COMORBIDITIES right aBa OF AUTISM provider her Cat areva martin: using the right to developing a free and Mindfulness a sense of to Conquer self and appropriate relationships Powerful insights on Parenting sURe FIRe Ways to combat BRIDGING THE GAP BETWEEN stress with asd eduCation froM a MoM with autisM back-to-school anxIety LEARNING AND LIVING Protecting Your child with Autism Motherhood - An UnconditionAl love Understanding the PeoPle We love School: PreParing Your child for TranSiTion WORING TOWARD TE FUTURE PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY PRESS TO BUY

Autism Parenting Issue 55 Magazine tOp 10 EssEntial tHE JOy Of Oils fOr GlutEn-frEE autism BakinG witH and adHd yOur family

simplE ways tO HElp asd kids dEvElOp Hand skills wHy CHildrEn witH asd nEEd family traditiOns Celebrating with the PeoPle we love PRESS TO BUY