Parenting Special Needs by Ahren Hoffman

0 , ! . . ) . ' s ) . & / 2 - !4 ) / . s ) . 3 0 ) 2 !4 ) / .

Parent Perspectives & Child Behavior

Financial

GAME PLAN:

Milestone Based Guide

PATH to the Future

$FREE Enjoy Any Issue, Any Time! Subscribe Today!

Parenting Special Needs Magazine is a FREE, online publication. Empowering parents, caregivers, and everyone by providing resources, information and inspiration.

Subscribe FREE Today at WWW.PARENTING SPECIAL NEEDS.ORG

inside this issue... Jan Feb 2014 Features Moms Share 15 Real Deb Discenza Shares about starting

motherhood with a 10 week “Preemie”.

a Financial 30 Creating Game Plan A Milestone-Based Guide to a Special Needs Plan

to the Future 34 Path What are your hopes and dreams for your child?

Start 20 Running First Steps for Writing the Letter of Intent Glass Half Full: 26 AParent Perspectives and Child Behavior

psn community news

52 10

9 Noteworthy! Sensory Saturday at Miami Children’s Museum EIU Autism Center to open to serve individuals with autism Lekotek and Beamz Interactive Partner to Offer Beamz Family

check it out!

10 Products You Can Use & Win! real life Doug 22 Dr. Interactive Technology may

Ask the

PROFESSION PROFESSIONAL AL

be a double-edge sword for children

Builder 24 Career Help Your Elementary School Youngster Cover Image Courtesy Billie Depatie www.d4photography.com Cheyenne Emily Tatiana Schaefer

Learn About Work

Moments 54 Proud Sharing “ I Can ” Attitudes JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

inside this issue... your life

25 28 40

Sharing Real Finds Get Organized

Mommy Time Outs Lake Tahoe, CA

IEP Preparation: The Mama Bear Strategy - How to hide your claws and get what you want!

special resources Needs Planning 38 Special Services: Financial and Legal Counsel

Score BIG with Fun App Games!

health & ﬁtness Nutrition 42 Gluten-free for Weight Loss? Fitness Fun

Every Day Flow Chart: 44 Fitness A Guide for You (Yes, You)

54 in every issue 6 7 8 55

PARENTING SPECIAL NEEDS.ORG

psn contributors from the heart contest/giveaways psn apps & more JAN/FEB 2014

Special Diets Do Not Have to Break the Bank

fun & functional Tips 50 ASL Reading & Incidental English of Play 51 Power Making a wiggly worm and toothpick art while waiting in a restaurant

“Foodie” fun for kids: Easy Baked Turkey Meatballs

Get Noticed,Get Promoted EXTRA in our... PERKS for listing with us!

Resource Center www.parentingspecialneeds.org Serving the Special Needs Community

psn contributors making a difference FOUNDER/EDITORIAL DIRECTOR

Chantai Snellgrove chantai@parentingspecialneeds.org PUBLISHER/EDITOR-IN CHIEF

Tom Snellgrove tom@parentingspecialneeds.org DESIGN DIRECTOR

Chantai info@parentingspecialneeds.org Meme Hieneman

Susan Parziale

Eric Chessen

Barrie Silberberg

Ph.D. in Special Education

Organizing Consultant

M.S., YCS, Exercise Physiologist

Author

GRAPHIC DESIGNER

Michael Leisttein info@parentingspecialneeds.org ADVERTISING SALES

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

Curt Mellott MidWest & Lower Eastern curt@parentingspecialneeds.org Robin Newman

Douglas Haddad

Christina Bartlett

LCSW, PC Clinical Social worker, Adjunct Professor

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

Registered Dietitian

Jim Hasse, founder of cerebral-palsy-careerbuilders.com

Advertising Sales Person Needed inquire at Sales@parentingspecialneeds.org CIRCULATION & PR

Bob Jaszcz bob@parentingspecialneeds.org WEBMASTER

Sean Thompson sean@parentingspecialneeds.org Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www. parentingspecialneeds.org Cynthia Falardeau Executive Director of the Education Foundation of IRC

Cristen Reat Co-Founder Bridging Apps.org

Ernst VanBergeijk

Barbara Sher

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

Pediatric Occupational Therapist & Author

Every kid needs a mentor. Everybody needs a mentor. ~Donovan Bailey Sarah Cook

Heath Burch

Photographer Cookwire photography

CFP The Special Needs Planning Center

Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reﬂect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2014 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PUBLISHED BY: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968

4EL s &AX

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

www.parentingspecialneeds.org

editorial director from the heart

Creating Game Plans...

So, we have all safely made it through the holidays I presume. Although this time of year always tends to make me think of the new year in a â&#x20AC;&#x153;newâ&#x20AC;? light, I canâ&#x20AC;&#x2122;t help but also know that this time of year is crunch time for football season...playoffs that lead into the Super Bowl. Now, you may say to yourself, â&#x20AC;&#x153;what does that have to do with our special needs communityâ&#x20AC;?? Well, in fact, the basic principle that wins football games can also help us win in our desire for a better life for our loved ones: A GAME PLAN. This issueâ&#x20AC;&#x2122;s theme is just that....creating a game plan. Not only a ďŹ nancial plan, but also an academic, social, lTNESS AND FUTURE PLAN 4HERE IS AN EXCELLENT PERSPECTIVE from a certiďŹ ed ďŹ nancial planner, as well as tips from lTNESS EXPERTS AND EDUCATORS THAT WILL HELP YOU PLAN OUT the coming months, and in some cases, the coming years. I know that looking at a game plan might seem like a challenging task, but, like the old question asks: â&#x20AC;&#x153;how do you begin the journey of a thousand milesâ&#x20AC;??......the answer is: by taking the ďŹ rst step. ) TRUST YOUR IS lLLED WITH SUCCESSES AND TRIUMPHS

Coming Next Issue Cultivating Growth

Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

about our cover...

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

Meet CHEYENNE EMILY TATIANA SCHAEFER, 6, who has been diagnosed with ASD (Atreil Septal Defect: wherein a hole between the chambers of the heart causes recycled blood to keep ﬂowing throughout the chambers). She loves to swim and skate and also loves her sparks group. Her parents, and her 2 year old sister, Brielle, are proud of everything she does and count every day as a blessing. They look forward to every new “ﬁrst” that she accomplishes. When Cheyenne grows up, she wants to be a mom.

Want W in I t ? it! Look for this symbol on pages then enter to WIN at PSN Contests

Easy Daysies from Ableplay

Write-and-Talk Speech Therapy Mirror by Fun and Function

Discovery Putty by Fun and Function

Time Tracker Visual Time & Clock

Cover Image Courtesy: of Billie Depatie www.d4photography.com

by Ableplay

Toddlers ddlers on Technology

Billie Depatie is a photographer and owner of D4 Photography in Morinville, Alberta, Canada. She is also the Co-founder of the Tiny Light Foundation.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

from Authorhouse

Stay in touch in order to W in! Like us on

Facebook.com/ Parenting Special Needs Magazine

Parenting Special Needs.org/ subscribe

psn community news

Sharing

updates

Sensory Saturday at Miami Children’s Museum sensory saturday

Miami Children’s Museum: One Saturday of every month, MCM hosts yoga, art, music and other great sensory experiences. This event is for children with sensory processing disorders. Lights and sounds will be dimmed to create a comfortable environment for children to happily explore.Families can interact and network with each other to learn about resources in their community. Pre-registration is required. Please RSVP to sensorysaturday@ miamichildrensmuseum.org or call (305) 373-5437 ext. 126

EIU Autism Center to open to serve individuals with autism Eastern Illinois University, Charleston, Il.:EIU is continuing their support and dedication to children with autism by opening its own Autism Center. The Autism Center would attract more families to EIU’s wealth of services, and help give these families the answers they are desperately searching for. Not only will the center give priority to individuals with autism, but give extra time for faculty members and students to focus on these disorders as well. If anyone would like to donate or ﬁnd out more information about EIU’s Autism Center, they may go to www.eiu.edu/crowdfunding/autism/.

Lekotek and Beamz Interactive Partner to Offer Beamz Family Play Guide Beamz Interactive, Inc., a leading developer of state-of-the-art interactive music products, announced a strategic partnership with National al Lekotek Center, a nonproﬁt organization dedicated to making play accessible and inclusive for children of all abilities. The National Lekotek Center has created the Beamz Family Play Guide that will encourage family-centered play. The objective of this tool is to educate families on ways to address the development of cognitive, sensory, communication and emotional skills with the Beamz. While the Family Play Guide was developed to “teach to the disability” it provides a stage for creative expression, entertainment and interactive fun for the entire family.

helping families with music

Image courtesy Polaroid

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

check it out! special products

Some of these Special Products are available for Parenting Special Needs Contest Winners. To enter, click on CONTESTS on our site and register.

Products you can use and win!

Put Time on Their Side

lanning is a skill many people struggle with so it’s a wonderful skill to begin teaching at an early age. Kids tend to live in the moment. Whether playing a game or watching a movie, all distractions fall away and they get absorbed in the sensory experiences they’re engaged in.

That’s fine, until children need to transition to the next thing or when panic sets in because time has run out. Planning is about picturing the future and making sure you have the gear you need to get what you want done. Making it a habit to plan out a day is a great way to build organizational skills in your young ones. Here are products that help:

W in it! Do you have a product you would like to share with our readers?

Helpful Books for Parents of Children T Complete Guide to Creating The A Special Needs Life Plan

Please send us an email describing your product. submit@ parentingspecialneeds.org Please make sure to put Product Share in email subject line.

PARENTING SPECIAL NEEDS.ORG

Easy Daysies is a magnetic daily planner that allows kids to move written tasks from one side of the board to the other as they are accomplished. This gives them a visual reminder of what’s to come and what has to be done. This concept also helps trigger feelings of success in children when something is completed.

by Hal Wright K Kingsley, Jessica Publishers T book provides comprehensive guidance on creating a life This plan to transition a special needs child to independence or to ensure they are well cared for in the future. Beginning with a vvision of a meaningful life for the child, Hal Wright explains how to form a practical plan to reach these goals, how to mentor personal empowerment and task skills, and how to create circles of support to sustain a life plan. JAN/FEB 2014

Time Tracker Visual Timer & Clock

W in it!

Planning is also about giving yourself enough time to complete a task comfortably. Some people habitually under estimate the time it takes to do something. Thatâ&#x20AC;&#x2122;s why we love products that introduce the concept of time lapse. Understanding and relating to the movement of time takes practice. Products that can help kids learn vary from a simple egg timer to the Time Tracker Visual Timer & Clock from Learning Resources. This multi-tasking timer has all the tools for transition alerts along with a clock, lights and sound effects. Use these tools and make a game out of your child guessing how long it takes them to do a routine task like brushing teeth or getting dressed. This will help them learn how long things take. So, take the opportunity to teach your kids about planning and give them (and yourself) the gift of time For more play ideas and toys for children with special needs go to www.ableplay.org. This website was created by the National Lekotek Center to encourage children of all abilities to experiences the beneďŹ ts of play. Find us on Facebook Reviewed by Ellen Metrick, Director of Industry Relations & Partnerships, National Lekotek Center; emetrick@lekotek.org

W in it! T Toddlers on Technology

with Special Needs

by P. Summers , Dr. A. Desollar-Hale, H. Ibrahimb L Leathers Author house A easy to follow guidebook from parents for An parents. The book analyzes emerging scientiďŹ c research on Digitods, while helping parents grab tthe reins of digital technology and exert control, so tthey can balance lessons their children learn in the digital world with essentional lessons in real life, d cconcerning physical, social and emotional growth.

check it out! special products Ball Pit

W in it!

Write-and-Talk Speech Therapy Mirror

Practicing speech is easier and more fun with the Write-andTalk Speech Therapy Mirror. One side features a dry-erase board where you can write letters, words or pictures. Flip it and watch yourself practice sounds in the mirror on the other side. Portable, handheld tool provides visual and multi-sensory cues to improve vocalization. Crafted in the USA. 11”W x 9.5”H with 6” diameter mirror. Age 4+ Price: $$32.99

Jump in and enjoy the soft play environment of the Air-Lite Ball Pit! Fill with balls or pillows to experience sensory integration, touch and gross motor therapies. For example, hide a soft object for the children to search and find. Roll, crawl, balance and jump in and out. Also perfect for quiet time, reading and speech and language therapies. Made from durable but soft flock material. Inflates in minute with high volume air pump. 2 Year Warranty. Weighs only 9.9 lbs. 46” diameter with 24” high sides. Holds 500 balls, sold separately. Adult supervision required. Age 3+ Price: $189.99

Explorer Dome Conquer inner space with the Explorer Dome, an adventure tent that kids can use as a sensory getaway to calm down, read or just hang out. Free-standing dome sets up indoors or outside. Two ﬁberglass poles and pole sleeves make it easy and quick to assemble. Air ﬂows through one large door with window, as well as a window on the back wall, and a small vent over the front door. Use for toy storage when your child ends the moon landing. 5’x5’ with interior height of 34”. Age 3+ Price: $21.99 www.funandfunction.

www.funandfunction.com

Discovery Putty Hide and Seek! Discovery Putty is the playful way to strengthen hands and improve fine motor planning. Stretch, mold and pull the putty until you find all 15 surprises -- and then hide the pieces again. Animal Rescue features a bear, ladybug, monkey, frog, parrot, lamb, giraffe, fish, whale and alligator, hidden in brown putty (firm resistance). Grab the Goodies has fruits and different chocolates, donuts, cookies, crackers and candies, hidden in yellow putty (soft resistance). Supports speech and color recognition as players identify each piece. High quality professional putty in convenient storage tins. Gluten, casein, latex and soy free. Safety-tested. CPSIA compliant. Not for mouthing or chewing. Adult supervision required. Age 5+ $12.99 each www.funandfunction.com

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

Enter to WIN at PSN Contests

W in it!

post your

special

events

Click here >>

SS PP EE CC II

A LLTT H EE A A A LL H

00 11 11 A PP RR 22 A RR // A MA H H !! M

ine

magaz

ealth Vision H

jury Brain In on Preveveernyti parent What

hy Healt

Greteinng Ea

know should

ative: Altern w Tomorro

ion cial Inclus ward So A PATH To

subscribe FREE today! Sharing = Caring

Be social share!

K CLIC ! HERE

parent pare aren en e n tingspec ingspec ing e c ialnee i lneed ed dss.o ..or org o rg

ÂŠ 2011 011 Fo Fox xB Broa r dcasting roadcast ttiing C Com ompa pan p ny

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

no limits!

Support Different-Ability Awareness

Deb Discenza Life’s lessons

Starting motherhood with a 10 week “Preemie”.

eb Discenza is an author who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter, Becky. We asked her a series of questions; some serious and some “just for fun”. See what she said...

Photos Courtesy Deb Discenza

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family. DEB DISCENZA: Our family consists of my husband, Gregg, our daughter, Becky,10, our 7-month old kittens, Baker and Stormy, and myself. Becky is in 4th grade in our district’s advanced academic program (AAP) school, is holding her own and has a solid set of friends. She has come a long way from being born 10 weeks early and working through a Neonatal Intensive Care Unit stay as well as developmental delays and accompanying therapies, a diagnoses of Asperger’s Syndrome, ADHD, Sensory Integration Dysfunction, Feeding Aversions, Developmental Motor Coordination Disorder and asthma. PSN: Tell us a little bit more about Becky’s (early start, NICU Journey) diagnosis and personality. DD: Becky was born 10 weeks early after my water broke while in the car on a large family outing an hour outside of town. Thinking that I, embarrassingly, had a bladder accident in the car, I quickly discovered the truth and was alternately crying, apologizing to my unborn daughter and trying to use my cell phone to call my family members in the car. I spoke to two ladies in a store office and asked if could I borrow their phone to call my doctor. I had them rush out to the car to inform my husband of the situation as the doctor’s office answering service started to “page a doctor”. Fast forward to the hospital: I was given shots to stop the labor, a shot to mature my daughter’s lungs, and put on strict bed rest. Thirty hours later, I was told by the labor and delivery nurse I would be delivering that night. It was 20 minutes to midnight on Grandparent’s Day. Becky was arriving so fast that the doctor on duty was still parking her car at the hospital. A doctor on the floor had to step in and a short while later Becky was born. A nurse held my daughter up so I could quickly see her then whisked her off to the NICU with my husband in tow. Becky’s NICU journey was definitely a “rollercoaster” despite her strong start. After the “NICU Honeymoon”, Becky was working through a number of breathing issues that required her to be on a CPAP and “on and off” of oxygen. Her heart had three “holes” that were common (and expected to close), but she may end up needing heart surgery. She received

Parenting SPecial needS.org

JAN/FEB 2014

my breast milk through a feeding tube for the first several weeks of her life and eventually took a bottle of fortified breast milk. Feeding issues that included a problem developing a solid suck/swallow reflex were an issue, as was GERD. Jaundice and anemia were also issues that were being addressed as they worked through tests on Becky’s eyes (she was at risk for Retinopathy for Prematurity), a hearing test and a cranial ultrasound for any brain bleeds. Everyday was different and while we saw improvement over time, we also saw setbacks including a very serious infection. Bit by bit I gained a little confidence by talking to her, singing to her, and doing Kangaroo Care. After 38 days in the NICU, Becky came home. She was required to be on oxygen and a monitor and was watched over by a pediatrician, cardiologist, pulmonologist, ophthalmologist, and a neurosurgeon. With Respiratory Syncytial Virus (RSV) starting as she came home, she received monthly Synagis injections until mid-spring to help her immune system fight the deadly virus should she contract it. My daughter’s feeding issues increased 5 days post-discharge and this landed her back in the hospital for 2 days. Within a couple of months, though, Becky shed the medical equipment and really “took off” as did my confidence in caring for her. The NICU experience has left a permanent mark on my husband and myself. Despite family and friends trying to tell me “she is out of the NICU and doing great, so you can relax now” my gut told me otherwise. I am glad I stuck to what my gut was telling me because a mother’s instinct is the best advocate for any child… and especially a special needs child. Photo Courtesy Deb Discenza

Fast-forward through the next 5 years and Becky was evaluated and qualified for Early Intervention for issues involving gross motor, fine motor and speech and feeding. The sensory stimulation therapy we gave her (through Early Intervention), plus a local kids sensory gym, rocketed Becky forward and she graduated the program within 7 months. During preschool we discovered a repeated need for help and so she was entered into ChildFind Preschool to receive help with speech (she wasn’t talking in class) and fine and gross motor activities. Kindergarten brought Becky into the world of the mainstream public classroom. At her first IEP meeting, I was clear with the 8 people around the table that I was concerned that Becky may be doing well in school but that my gut told me something wasn’t right. I had voiced this so much over the years, but received little in the way of understanding. Becky was very bright (she started reading at 2-3 years of age) and in Kindergarten was reading middle school and some high-school level books. She also had a love for chemistry, astronomy and other hard sciences. She seemed to still maintain parallel play with other children and talked to adults like a “little professor”. She continued to have issues with feeding, fine/

Becky loves to attend a local cat adoption fair, they call her “the cat whisperer”

gross motor skills and I felt, at the time, with her attention span even though ADHD had originally been ruled out. When the school psychologist pointedly asked me if my daughter ever looked me in the eye, I was shocked. Diagnosing autism? Now? In Kindergarten? I stammered that “yes, she did look me in the eye”. Testing was suggested and I agreed wholeheartedly. Yet nothing prepared me for the day the results came in and I met with the School Psychologist. Becky indeed had a high IQ and they suspected she had Asperger’s Syndrome. I left the meeting with tears in my eyes and spent the day alternately crying and calming down. Becky was officially diagnosed with Asperger’s Syndrome and off we went with social skills therapy, occupational therapy, hippotherapy, nutritional therapy, a feeding program and more. In second grade, we added Attention Deficit Hyperactivity Disorder to the plate and medication was started. In third grade we added Developmental Motor Coordination Disorder. We had always told her IEP team that we wanted to make sure Becky was getting enough educational stimulation given her intellectual interests. They had her work with the part-time advanced academic program at the school and she thrived. In second grade she was tested, and was accepted, into the full-time advanced academic program (AAP) for our school district. I was hopeful that she might find some real friends in the classroom that had a similar personality as she did. The non-AAP program was leaving Becky with no friends at all. It ended up being the best decision ever because Becky now has a number of solid friends and she is thriving in a classroom environment that keeps her on her “mental toes”. PSN: Share with us something YOU, personally, had to overcome by being a

PARENTING SPECIAL NEEDS.ORG

mother to a special needs child? DD: That taking a “therapy break” is not only important, it is necessary. The therapy treadmill can really drain everyone in the family, especially the child. Giving my daughter time to focus on friends and “just being a kid” has been eye-opening. For the longest time we have not known a “normal life” and providing ourselves with self-care and selfnurturing was essential to our long-term happiness. Therapy will start up again, but this time, on our terms. PSN: What have been some of your biggest obstacles/challenges raising your child? DD: Feeding! Having a child with a very limited diet wreaks havoc on socialization, the grocery bill, and sanity. While I am grateful we did not have to bring our daughter home from the hospital on a feeding tube, it suddenly dawned on me that we were dealing with a much more complicated situation than your average selective eater. Thankfully, we had one feeding program in place and Becky’s diet has expanded nicely. But, we are still working through a lot of challenges. It hurts, though, when we get judgmental looks from other parents as our kid eats a huge plate of pasta and they believe that we are just bad parents or they tell us if we “just gave Becky to them for one week they would ‘ﬁx her’”. Our society still has a long way to go in terms of understanding conditions such as autism and what the word “spectrum” means. PSN: What has school/education been like for your child? DD: Academically, Becky has been very strong in language arts, social studies and science. Math has had some struggles, though. Our area is known for its school system, high grades and testing scores. Yet, we choose to focus not on the love of learning compared to perfection in academics. I am quick to step in and ask the teacher about ways to help Becky. I make sure to volunteer in the classroom as room parent, or in the school library, etc… so they know that the family supports her school and her hard work. I am not just Becky’s mother who is expecting things from the team…they know I am a full member of their team helping Becky.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

PSN: Do you have a proud moment you would like to share? DD: The day Becky’s feeding therapist came out of the session and told me my daughter had eaten popcorn shrimp. I was beyond shocked. I started to tear up . . . it was like I could honestly see a small light at the end of a very long, very dark tunnel. Becky was 6 years old at the time, and we had been working through feeding issues since her birth. PSN: What kind of life do you envision for your child’s future? DD: My daughter’s future is definitely on my mind. Part of me desperately wants to protect her from the bullies of the world. I imagine Becky will require some organizational assistance throughout the rest of her education and her chosen career and she will be on various medications the rest of her life. With help and with some understanding for her quirks, we pray our daughter finds a field that fires her passion in whatever way possible. I pray she starts to work around the feeding aversions and also works on a regular exercise routine to keep her healthy and fit. As we hoped for a happy and healthy baby ten years ago, we pray for the same into adulthood. PSN: Share with us some life lessons you’ve learned on your journey raising a special needs child? What do you know now that you wished you had known earlier? DD: Well, my daughter recently attended the Washington DC Air & Space Museum’s adult lecture astronomy series that was put on through a partnership with Harvard University and NASA. Becky went toe-to-toe with the Harvard/NASA Astrophysicist grad student and her advisor over habitable planets. My jaw dropped as I watched my daughter (special needs and all) hold “her own” and ask a very pointed question. She did this with incredible poise that pricked my eyes with tears. All the hard work that we have put in over the years (and still do) is more than worth it. We are giving our daughter the tools she needs to function in a world that is slowly starting to appreciate quirks and challenges as gifts.

PSN: BOOK/ADVOCACY: You’ve written a book “The Preemie Parents’ Survival Guide to the NICU” and online support through “Preemie World”. What was your impetus/spark/motivation for writing your book (what was the moment that made you decide to take action)? DD: I have done a lot of advocacy work surrounding a few core issues in prematurity: 1) Respiratory Syncytial Virus (RSV) awareness and making sure preemies have access to life-saving medications. 2) making sure that parents have access to news, research, developmental resources and more. 3) public awareness of the issues surrounding the mental health needs of families in the NICU and after. Parents are often coping with the scars of the NICU and beyond that can lead to depression, PTSD and ultimately divorce/break up. The book has the same passion as the advocacy work – to help support families in the best way possible to help them help their child. Nicole Conn (co-author) and I wanted to re-think the preemie parent books out on the market and, as a result, we have created something special and extremely useful. This is the book Nicole and I would have wanted to have during our NICU journeys. It has received rave reviews from neonatology journals/publications both nationally and internationally. PSN: What are some of your main goals or mission with “Preemie World”? DD: PreemieWorld creates tools for the preemie parent and preemie professional communities. Whether it is our Preemie Parent’s Survival Guide to the NICU, our little man institutional license editions for professionals, or even our free printable newsletters, we feel that information on both of sides of the NICU, at discharge and in Early Intervention is wanted and essential. PSN: In conclusion, is there anything else that you would like to share with our readers? DD: PreemieWorld’s newsletters are available for free subscription to your readers at http://bit.ly/preemie1 (for Preemie Family) and http://bit.ly/preemie2 (for Preemie Professional). Y PSN: Deb, thank you so much for sharing with us your experiences and the lessons you have learned raising Becky.

n u f Just for about Deb What do you do to ﬁnd time for you? Regardless of what is going in work/ life, I make sure my daily schedule includes time to work out at the gym. And I try to take some time each evening to sit and listen to an audiobook and do a little needlework. Mommy timeout: Dream vacation? A month-long vacation with my family to the United Kingdom so we can roam around England, Ireland and Scotland. Favorite treat? Chocolate! Your one makeup essential? Face cream Do you drink Coffee or Tea? Tea. Although, I am more of a huge hot cocoa (with milk) fan. Are you a dog or cat person? A little of both, honestly, but our family has cats. Favorite wacky word or phrase from Becky? “I am not a baby!” When a docent at the Harvard/NASA lecture came up and enthusiastically praised my husband and myself on our “baby scientist.”

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

Running START First Steps for Writing the Letter of Intent

he letter of intent (LOI), though not a legal document, plays a central role in your child’s special needs plan, putting its endless details into personal perspective. Distilling years of family experience, it’s meant to ease a difﬁcult transition by guiding future caregivers, guardians and trustees in the decision-making that will shape a loved one’s life when parents are gone. Families with special needs can be so overwhelmed by daily challenges that capturing lessons learned doesn’t top their to-do list. It’s also emotional, requiring them to envision a time when their child will be without them. But the LOI is too important to delay. At any time, an unforeseen accident could land you in the hospital, or worse, with others suddenly called upon to assume your responsibilities. So here’s a less daunting way to begin. Think about what you’d share with another family member if they needed to care for your child for a couple days while you were out of town. What would they need to know to maneuver 48 hours of caregiving? By concentrating on the basics, you’ll construct what I term the “executive summary” of your LOI; a two-page list of bullets that can be consulted when there’s no time to leaf through a notebook.

Begin by imagining what you’d share about any young child: Here’s what she’ll eat. This is what time he goes to bed. Then build on that with the extras required for a child with special needs. At a minimum, this “lean LOI” should include: ✓ Daily routine. ✓ Best ways to communicate with the child.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

✓ How to manage behaviors. ✓ Hot button words to avoid. ✓ Names and contact information for teachers, aides, bus driver, social service providers and employer. ✓ Medical information including names and contact information for doctors and therapists, lists of medications and location of prescriptions and pharmacy. ✓ Health insurance coverage. Make this a family affair. Bring everyone together around the kitchen table, including the child with special needs, if they are able to participate. Let the conversation flow freely and just start taking notes; you can fine-tune later. Siblings have a different perspective from parents and are often able to think of important details that mom and dad would overlook. Once you have your “short document” composed, share it with anyone who’s likely to need it in the future and keep a copy alongside your other important papers. Review and update it annually. Over time, you can build on this foundation, and you may find it useful to cross-reference the bulleted with specific pages in the full LOI that you’ll eventually create. A more complete LOI should capture your child’s history, preferences, the texture of daily life and your aspirations for the future. Here’s a partial list of additional information to include: ✓ Contact information for family members and friends. ✓ Complete medical history. Also include medical history of immediate family members. ✓ Description of current living situation and, if that will change when you are no longer the primary caregiver,

©ALX photoxpress.com

by Brian Neal Rubin J.D. Special Needs Alliance

advice real life your preference for alternative arrangements. ✓ Financial documents. ✓ Public beneﬁts they are receiving—Medicaid, Medicare, SSI, SSDI. Include Social Security numbers for the child and both parents. Share tips for dealing with government bureaucracies. ✓ Local agencies through which they receive services. ✓ Legal documents, such as advance directives. ✓ Educational history. ✓ Employment history. ✓ Food allergies, likes and dislikes. ✓ Assistance required with personal care. ✓ Clothing sizes. ✓ Personality traits. ✓ Lessons learned and situations to avoid. ✓ Favorite things. Also explain what the child ﬁnds upsetting. ✓ Social activities. ✓ Pets. ✓ Hopes for the future. ✓ How to discuss a parent’s death or incapacity.

Special Planning for a Special Life

There are many sample LOIs available on the Internet, but, I suggest that you use them with care. Each child is unique, and you’ll almost certainly ﬁnd that these templates fail to address matters of importance to your child or contain sections that are inapplicable. Just cross out the irrelevant portions and, recognizing that this is your document, make any necessary additions. The LOI is an intimate document, containing much information that only family members can provide. As my wife and I wrote in our own LOI,“How do we tell you all about our son…his life, how to talk to him and get along with him, as well as our hopes and dreams for his future… all in a few pages? Impossible…but here goes.”Y

Have a question for “Ask the Professional”?

Send an email to: advice@parentingspecialneeds.org Please make sure to put “Ask the Pro” in email subject line.

Ask the PROFESSION PROFESSIONAL AL

All individuals with intellectual and developmental disabilities deserve a dignified end of life. The Problem Strict Medicaid and SSI requirements limit options fund a respectable funeral. The Solution Our experts will assist you in funding your loved one's final expenses without compromising their valuable government benefits. Call us Today! Contact us today to protect your loved one by ensuring that resouces will be available to fund a dignified end of life.

SPECIAL CONSIDERATIONS

2773 S. Queen Street Dallastown, PA 17313 Phone: 1-800-405-4232 www.specialconsiderations.com

INTERACTIVE TECHNOLOGY May be a Double-Edged Sword for Children by Douglas Haddad, Ph.D.

oday we see that technology has inﬁltrated the lives of children as young as infants. A recent survey on tablets and toddlers shows the number of kids using touchscreens has doubled in the past two years — almost 40 percent of babies under two and nearly 75 percent of kids under eight are using them. Although technology serves many beneﬁcial purposes, it brings with it some possible disadvantages for children of all ages.

The XO Tablet

The dangers of the technology dagger

In addition, there is a “Dreams” section that brings the different professions of the workforce right to children for them to be exposed to the different aspects of that job. A great thing about the tablet is that it provides parents with a tool called “Journal” that gathers information as to how their children are spending their time on the XO and where their strengths lie. This provides a great starting point for conversations about their child’s interests and passions in life.

❖ New guidelines from the American Academy of Pediatrics state children should not be allowed more than two hours of screen time a day and that children under two should not spend any time in front of a screen.

Vivitar and One Laptop Per Child recently introduced a product that I would recommend for kids preschool through middle school called the XO Tablet. It is an Android-powered learning tablet that possesses many features available across a broad range of subjects and skill levels. The child is able to learn other languages at an introductory level. There are also games and ebooks incorporated into the tablet.

❖ Research has suggested that young people are facing a “healthcare time bomb”. Musculoskeletal health-related issues have been linked to the use of computers, video games, iPads/tablets and smartphones. The research showed that The Leap Motion Controller nearly 3/4 of elementary school children and 2/3 of secondary school children have reported This new 3-D motion control technology opens back or neck pain within the d doors to interactive learning. Teachers can last year. When toddlers are beneﬁt from this product by getting all b “Technology is just using touchscreens, they are c children involved and it is an affordable a tool. In terms not strengthening the muscles way to provide enrichment at home this w of getting the kids necessary for writing. working together and sschool year. Kids are able to control their motivating them, the ccomputers with the use of their hands ❖ Therapists indicate that there teacher is the most aand ﬁngers for learning and exploration. are plenty of worthwhile important.” IIt comes with Airspace, which is an app educational apps for ~ Bill Gates sstore with access to educational apps of children, but suggest limiting (co-founder and chairman aall kinds for all ages across a variety of touchscreen use to no more ssubjects. than 15 minutes at a time.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

advice real life Some examples include:

moderation appropriately.

❖ “Curious Kids” for early education in exploring animal sounds, practicing counting and playing the piano.

❖ Student learning can take place through authentic, challenging tasks at a child’s own pace and level and strengthen any weak areas to make them more rounded out learners.

❖ “TVOKids Caterpillar Count” for learning to count by guiding a caterpillar around the screen with their ﬁnger to collect numbers in sequential order. ❖ For geography, there is Google Earth for discovering cities, mountains, rainforests and oceans on Earth along with new sights on the moon and other planets. ❖ Science has a virtual dissection where kids can learn how the human body works by pulling apart and putting back together different portions of the body. ❖ Furthermore, kids can learn music through air drumming, harp plucking and piano playing.

Interactive technology serves many useful purposes for the future of education -- when used in

❖ It creates a balance between teacher-centered and student-centered learning to give the child some ownership of their learning. ❖ Helps to spark curiosity, maintain interest and strengthen motivation for learning. ❖ Creates a climate that supports learning both in the classroom and beyond the school setting into the homes. For more information on empowering your child and assisting in their maturation, decision-making, overall development and becoming super healthy: Check out Dr. Doug’s ofﬁcial website: www. douglashaddad.com.Y Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids… Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields..

Help Your Elementary School Youngster Learn About Work by Jim Hasse

alk to your youngster about occupational interests and the speciďŹ c jobs and j titles which are job associated with those interests. Explore together what it t means to work. Itâ&#x20AC;&#x2122;s never too early t begin talking to t your youngster to about occupational interests and the speciďŹ c jobs and job titles which are associated with those interests. At the elementary level, career information for kids usually focuses on:

s 4HE AWARENESS OF INDIVIDUAL DIFFERENCES AND PREFERENCES s 4HE ENJOYMENT OF LEARNING AND DOING s 4HE SKILLS TO MAKE A DECISION s 4HE BROAD CHARACTERISTICS AND EXPECTATIONS OF WORK I ďŹ rst learned about occupations and job titles when I began attending orthopedic school in second grade. I remember the big black locomotive spewing black smoke and the black dust from the adjacent coal yard.

PARENTING SPECIAL NEEDS.ORG

NOV/DEC 2013

I had also learned that the guy in bib overalls peering out the window of that locomotive was a â&#x20AC;&#x153;locomotive engineer.â&#x20AC;? As a farm kid, I had not seen a locomotive before and couldnâ&#x20AC;&#x2122;t identify a picture of it when I ďŹ rst entered orthopedic school during an IQ test (to the chagrin of my new teacher), but my mom countered, â&#x20AC;&#x153;What do you expect? Heâ&#x20AC;&#x2122;s a kid from a rural area.â&#x20AC;? I knew what a carpenter was, though. My great grandfather always had a hammer in his overalls and was the ďŹ x-it person around the farm. One day my grandmother asked me what I wanted to be when I grew up, and I replied, â&#x20AC;&#x153;Carpenter.â&#x20AC;? Keeping in mind my cerebral palsy, she scoffed, much to my disappointment and confusion. â&#x20AC;&#x153;You better think of something else,â&#x20AC;? she replied sharply. What I didnâ&#x20AC;&#x2122;t articulate at the time and she didnâ&#x20AC;&#x2122;t understand is that I wanted to be a â&#x20AC;&#x153;builder.â&#x20AC;? But, by the time I was 10, I had a pretty good feel for what people did for a living and what job titles were all about. And, I knew I wanted to build things through writing. Y Jim Hasse, founder of cerebral-palsy-career-builders.com (the careercoaching guide for parents of CP youngsters) is an Accredited Business Communicator and Global Career Development Facilitator. He has CP. See http:// www.cerebral-palsy-career-builders.com/career-information-for-kids.html

ÂŠmax blain/photo xpress

your life get organized

Sharing

realfinds

High Road Kids Car Seat Organizer

end car clutter

BYE-BYE Cord Confusion

Dotz Cord Identifiers Color-coded cord identifiers instantly answer the question of which plug goes with what. Lets you quickly identify your cords and cables. Color indentifiers fit cables for your computers, home entertainment, cameras, cell phones, MP3 players and more. $8.29 for a pack of five at Office Depot www.officedepot.com - photo: technabob.com

A large capacity organizer holds everything your kids need in the back seat. Easily snapping on/off the seatbelt, it contains adjustable dividers inside, 8 outside pockets, and a surface you can draw on and play on. The sturdy bin lid ﬂips up into a tray top that keeps crayons or food from falling off. Comes with carrying strap and available in Bright Blue. $13.49

Six Shelf Closet Space Saver

www.cargogear.com

www.biglotts.com

Store more in less space! Keep your closet looking neat and clean with the Mainstays Organizer Combo Pack. The six-space organizers give you plenty of space to keep clothes, accessories and more. Attaches to any closet rod utilizing a wide Velcro sleeve, durable ﬂat shelves and reinforced seams. $5.99

no more closet chaos

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

A GLASS HALF FULL:

PARENTING PARENTING SPECIAL SPECIAL NEEDS.ORG NEEDS.ORG

NOV?DEC2014 2012 JAN/FEB

Parent

Perspectives & Child Behavior by Meme Hieneman

ave you ever been frustrated with your child’s behavior and found yourself thinking something like, “It really doesn’t matter what I do…my child is just not capable of understanding or behaving better”, or “I must not be a very good parent if I can’t handle this”? When those thoughts crossed your mind, did you find that you behaved differently? For example, did you get angry with yourself or your child, give in to your child’s unreasonable demands, or retreat from the situation altogether? As parents, negative thinking can significantly affect our expectations, reactions, motivation, and followthrough. When discouraged, we may deviate from our preferred parenting practices. A recent five-year study by Mark Durand, Meme Hieneman, and colleagues explored the impact of parent beliefs on interactions surrounding child behavior and the outcomes of behavioral intervention. We compared simply providing parents education in positive behavior support in an effort to support management practices with the same program combined with a cognitive-behavioral approach called “optimism training.” That component helped parents explore and adjust their thinking, as well as their behavior. Not surprisingly, parents who learned to understand and overcome negative thinking made more positive gains with their children and felt better about themselves in general. This article will briefly describe this optimism training which, when combined with effective behavior support, can improve child behavior and family life.

Optimism training comes from work by Dr. Martin Seligman related to learned helplessness. Here is a summary of the process and some examples of each step: 1. Identify situations that provoke negative thinking and beliefs. Consider events, activities, or circumstances that upset you. For example, going grocery shopping may be particularly difﬁcult because your child grabs or demands items and refuses to remain by your side. His behavior is disruptive and embarrassing. You are frustrated and have lost hope. As a result, you think, “I can’t take him anywhere and everyone watching thinks I have no control of my child.”

2. Determine the consequences of your negative thinking. Look at how your thoughts affect your behavior both in the short term and long-term. For example, you might start yelling at your child or force him to sit in the cart. You might just hand him a box of sugary cereal to placate him even though you know this is just feeding into the problem. Or you might start avoiding taking him shopping, inconveniencing you and limiting your child’s opportunities to learn to function well in public.

3. Assess the accuracy and usefulness of your beliefs. Consider whether your thoughts are true (both in part and in entirety) and useful. For example, it may be true that taking your child to the store is difﬁcult and that he has not yet learned to request items appropriately or accept being told “no”. His behavior may very well be disruptive in the store. It is probably not true, however, that you cannot take him anywhere. There may be other places in the community where he is well-behaved or you may have had a couple successful shopping trips when you needed fewer items. Some, but not all, other patrons may be bothered because they do not understand your circumstances. More generalized or exaggerated thinking such as believing that problems will occur always or forever and blaming yourself or your child is not helpful. Those thoughts leave you feeling stuck and reacting in ways that are not beneﬁcial.

4. Replace negative thinking with positive alternatives. If you determine that your thought patterns are interfering with productive responses (e.g., believing that your child doesn’t know better results in you inadvertently rewarding problem behavior, you find yourself establishing unreasonable expectations that lead to power struggles), it is important to stop those negative thoughts in their tracks and fill the void with more encouraging beliefs. For example, you may think “CUT” when you think things such as this is always a problem or things are out-of-control. Instead, you may say something like “My child can learn to accept limits”,“I need to stick to my guns, even though it is difficult”, or “The opinions of strangers do not matter”. These positive thoughts may give you the support you need to follow through with behavior support strategies such as reviewing expectations prior to entering the store, providing rewards for not grabbing or demanding, and withdrawing to a quieter area to regain composure rather than giving in to your child’s demands. Negative thinking can lead to an escalating, self-perpetuating cycle in which we start avoiding circumstances or responding to behavior in unproductive ways. These thoughts can also transfer to other circumstances, causing a feeling of helplessness. Replacing these thoughts with positive affirmations provide us with the motivation to follow through and make a difference in our children’s, families’, and personal lives. Y Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

Mommyâ&#x20AC;&#x2122;s Timeout : Take a time out and use V isualization Meditation to relax. Picture yourself here amongst the tranquility of Lake Tahoe. Experience the silence Take a couple of deep breaths and begin to let go of any stress. Lake Tahoe, California Bay View, South Lake Tahoe, CA US Photos courtesy of ÂŠ Via Flickr: vshioshvili

breathing space your life

:I<8K@E> 8 =@E8E:@8C

by Heath Burch, CFPÂŠ - The Special Needs Planning Center

he addition of a child with special needs to your family can bring a range of emotions. With time the emotions can settle, but the responsibility of providing for your growing family often takes hold. Creating a financial plan with a trusted advisor is critical, and arriving at various milestones can guide you in what to do next. Below are seven milestones to benchmark your planning efforts with financial advice for every turning point.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

8 D`c\jkfe\ 9Xj\[ >l`[\ kf X Jg\Z`Xc E\\[j GcXe

-at diagnosis:

The first thing to remember at diagnosis is to calm your thoughts and avoid making any sudden financial decisions or significant changes. The changes to your family will likely result in the need for financial adjustment, but they don’t have to happen all at once.

Start by working to educate yourself on your child’s diagnosis, building a base of knowledge to later plan for his/her long-term needs. A great way to do this is to find a support system, whether that be a parent support group, diagnosis specific organizations or other community groups. If there is one financial adjustment that can be made right away, beginning to build cash reserves is an admirable goal, especially if you don’t already have a healthy emergency fund. For most families this is not something that can be done all at once, but recognize that unplanned expenses may come up for the care and support of your child. Having cash available to handle these unplanned expenses may save you from having to make difficult financial decisions later as a result of taking on debt or forced account reallocations.

2-Consider the Long-Term:

Deciding to address what happens to your child if something happens to you is not easy for many parents, so finding the momentum to draft a will and trust can be challenging. That’s why this guidance isn’t tied to a benchmark, and is instead something we would encourage a family to address as soon as they are emotionally ready. Once you are prepared to discuss this, engage a qualified attorney that focuses their practice on special needs planning. Work through the drafting of a will to name guardians for your minor children, and talk through a family trust to handle the

distribution of your assets. And if you expect that your child may qualify for SSI or other supports, consider a special needs trust to help preserve eligibility. Once the trust work is in order your job is not complete until you have adjusted all of the beneficiary designations to reflect this work.

3school-age:

-as your child reaches

This time can provide a moment of financial pause for parents, where the focus might be on early intervention for your child and the preparation to start school. But that financial pause quickly dissipates if you are fortunate enough to have options when considering your child’s needs. The expense associated with private school options raises a number of financial questions. Can you afford these options, do the catered services to your child’s diagnosis justify the expense, and what are the long-term financial impacts of these decisions? The entire family must be considered when thinking through the impact on retirement, future education funding and the ability to leave assets to a special needs trust. As you work through your Individualized Education Program with the district, consider what holes might be left to fill through private services. The IEP will develop the core routine and support structure for your child, but what else might you need to integrate outside of the school day and how do those services fit in the family budget?

Your Child 4-Turns 18:

A big transition for parents and child alike occurs when your child turns 18 and becomes an adult. Maybe the most pressing task is gaining an understanding of what social security is and what it can provide, both now and in the future. While some of the benefit of social security may not become clear until later on if your child

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

qualifies, one definable perk is the monthly cash benefit that is scheduled to increase to $721 per month in 2014. This cash benefit can help support the household and provide for your child’s needs, but also comes with requirements. You need to know how to report the receipt and use of the funds, consider charging your child rent in order to preserve the full monthly benefit amount and also manage the accumulation of the money so it does not exceed asset restrictions.

5 School:

-After High

It’s during this time you have to work to avoid falling in the “black hole” that can form when you leave the daily structure of the school system. Are there post-secondary education options to consider, and if so how do you implement the funding strategy that should have been created years prior? If some form of school or career development isn’t appropriate, are there employment options available to your child? These options can come in the form of full or part-time employment, or possibly through work programs designed to increase independence, all with a varying impact on your child’s (and thus your) finances. It’s at this time that you should begin to gain some clarity as to what your child’s financial needs will be going forward, so as a family you can begin to really plan for how you will supplement what your child has available through social security and possibly employment. For the first time you can begin to see how much your child will need in their trust. The financial planning becomes ever more important during these years, because while many are enjoying their peak earning years and saving more for retirement than before, the newfound clarity of what might need to be left in trust for your child can be unnerving. Saving for our own retirement can be challenge enough for many, so adding the funding for a special needs trust to the equation requires a heightened level of focus and specialized guidance.

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

6Adulthood: - Entering

As you approach a time of peak independence for your child, residential options can now become a consideration. Finding the appropriate option with your child takes dedication and time, and the funding for these options can take the same. Is the best solution for your family funded via social security, does it require private payment or is it a combination of the two?

- Later in Life: It’s time to be certain

that your estate is in order. After outlining all of the potential costs earlier, understand that these expenses don’t end when you are no longer here to provide for them. Your money doesn’t just have to last as long as you do, but for as long as your child needs it. Make certain you have sought out the counsel of an advisor experienced in helping you achieve this. Financial projections could run for decades longer than your life span to properly secure your child’s future. Also spend the necessary time making sure you have enabled future caregivers and trustees to do what you have asked of them. Have you accounted for all of your assets in a centralized location, complete with the financial projections that were the foundation of your decisions? Are all necessary records organized? The time to integrate the people that will be your child’s future support system is now.

Regardless of which milestone you are at, know that you are not alone. Don’t hesitate to research resources and engage a trusted advisor to help you navigate the opportunities and challenges together. Careful planning is key, and understanding milestones can help ensure a smoother transition from milestone to milestone and peace of mind.Y Heath Burch, CFP® a certified financial planner and the co-founder of The Special Needs Planning Center in Kansas City, MO. He lives in Kansas City with his wife Martha and their two sons, Warner & Whitaker. Heath’s formal education includes degrees in both Finance and International Business. His advisory and financial planning career began in 1999 and soon after he found his calling working with families with special needs.

1R 0DWWHU :KDW V 0LVVLQJ

Beauty Shines Through.

HELP PROMOTE AWARENESS of WILLIAMS SYNDROME /HDUQ 0RU H

wschanginglives.org

:LOOLDPV6\QGURPH&KDQJLQJ/LYHV)RXQGDWLRQ

A PATH to the Future by Luanne Bertaux, Laura McGill, and Mary Grace Hektner,

What are your hopes and dreams for your child?

hen you learn your child has a disability, it often detours your dreams for your child’s future. As your child learns and grows, your aspirations change with them. How do you help your child have the full and meaningful life you have always wished for? The Exceptional Student Education (ESE) Department of Indian River County Schools is committed to helping parents and their children make dreams a reality by improving our transitional services for students with disabilities. Working through our new Parent Advisory Committee, we have adopted curriculum and assessments to facilitate positive transition from school to college, career and community. Read about Patricia Moody’s Path to Success

Parenting SPecial needS.org

JAN/FEB 2014

One method of planning for the future is completing and following a PATH. PATH (Planning Alternate Tomorrows with Hope) was developed in 1991 by Jack Pearpoint, John O’Brien, and Marsha Forest. PATH is a powerful, person-centered planning tool that assists families in identifying and reaching goals and dreams for their child with a disability. The family and their support network come together to develop an action plan for a positive, desirable and possible future for the student. A trained facilitator assists the student, their families, and representatives from support agencies to specifically define what the student wants for their future. Then the team develops and graphically displays the steps to reach the future goals.

There are eight steps to the PATH process: 7. 8. 5. 3. 4. New People Ways Commit Next To To Build To the Months Work Enroll Strength FIRST STEP

6. Charting Actions

1 . Goal: 2

. Dream: The team identifies the dream (out-

come) that the individual desires for the future.

Beginning with the dream, the team develops long-term goals for the student. With the help of the facilitator, the team develops a vivid, colorful display of the student’s future that is both positive and possible. The team selects a date for an end goal projecting out one to three years.

3 . Enroll People: 4

. NOW: The team describes the present. This is a snapshot of the student’s current life.

The team identifies additional people to enroll in this change process. Who needs to be involved to make this goal attainable? If there are people needed who are not available, how do we get their support?

. Build Strength: The team recognizes

ways to build strength – the team members and the student identify what skills and knowledge the student will need to reach their dream, and how the student can get them.

2. GOAL

1. DREAM

. Action Steps: With the facilitator’s help,

the team breaks down the PATH into smaller parts. They develop concrete action steps toward the end result that can be completed in the next several months.

. Next Months Work: The team then adds action steps that can be completed one month after the PATH process.

. Commitment: The final step is commitment

from the team to action on the PATH. The team identifies an action step that can be taken immediately, and participants sign the PATH as a visible sign of their willingness to support it.

Completing a PATH is not an easy process. Participants must come to the table prepared to listen and respect others’ opinions, and the focus must stay on the individual for whom the PATH is developed. A well done PATH will take three to five hours to complete and years to fulfill. The PATH should be a fluid working document and reviewed often to ensure that the team is on track in completing action steps. Some goals may need to be adjusted and timelines may need to be changed. Completing a PATH is an emotional and rewarding experience for all those that participate. “PATH is a metaphor, a map for a journey. There are many PATHS, and each can be walked many times, in many ways.” w Indian River County, FL., School District ESE; Luanne Bertaux, District School Specialist; Laura McGill, Program Specialist; Mary Grace Hektner, District Specialist and Randall Hunt, Exceptional Student Education Program Specialist.

JAN/FEB 2014

Parenting SPecial needS.org

Patricia Moody’s PATH

by Mike & Nancy Moody

^ To wacth performance video click on image

atricia was starting high school out of our district at SRHS. The students did not know her. Would they accept her? We approached high school with trepidation. But, we had hopes and dreams for our daughter. Would the teachers share our hopes and dreams? We knew about the PATH from the Florida Inclusion Network and we requested it for Patricia in the spring before she entered SRHS. We invited her grandmothers, her teacher, therapists and the aide from middle school, and of course, Patricia. We prepared yummy eats (it takes 2 to 3 hours to complete the PATH). The day of the PATH we were met with the principal and four teachers – what support! The atmosphere was happy. It was a time to be hopeful and freely express our dreams for Patricia. And yes, Patricia expressed herself all during the time we were working on her PATH. All of us were directed to focus on our dreams for Patricia,

PARENTING SPECIAL NEEDS.ORG

no holds barred, realistic or not. While we were all sharing during the PATH process, a team member was diligently illustrating our suggestions. The first thing she illustrated was a large yellow star and she wrote “North Star” – that got everything started. We let loose with a profusion of dreams: We want Patricia to graduate, know how to handle money, learn to cook, be healthy, be active, be happy, shop with friends, have a church life, get married, be independent. Patricia was in agreement and she contributed these things: she wanted to use sign language all her life, go to IRSC, be in a church choir, live in a 3-story home of her own, have a family farm, take care of sick animals, go to football games, and go skating and horseback riding. So, those were the dreams. The process of coming up with a plan to accomplish those dreams was the stuff of the rest of the PATH process. We were all enthusiastic, even the teachers who did not yet know Patricia. They were

JAN/FEB 2014

phenomenal; they knew their students and the steps it would take for them to accept and develop friendships with Patricia. Everyone was committed to working together to make her dreams a reality. Today, long after the event of the PATH, Patricia not only uses sign language, she teaches it to seven classes each week! She still needs help with money but writes her own checks. She works out 3 times a week and takes vitamins to stay healthy. She took two, 4-credit hour courses at IRSC in sign language and made “A’s” in both of them! She does not sing in a church choir, but she has sung and signed the National Anthem for numerous events. She performed her own concert “Patricia Live” twice. She is not married yet but she does go shopping with friends. And friends – wow! – high school was the best because of her friends! Patricia is certainly a happy person; in fact Patricia is known as the “Happy Advocate”! Y

Video Courtesy of Verola Studio. www.booktheday.com

parentingspecc ia ialne a lne lneed ne e ed eds ds.org ds d s .org

Temple Grandin, PhD Doctor of Animal Science

Image Cour Courte urrte tessy yE Eus u taci ustaci tacia a Cutler u

As a doctor of Animal Science, Temple has been instrumental in the way we treat animals. She is a Professor, Inventor, Author, and Consultant. She is the basis for the eponymous, award-winning HBO movie. Temple was diagnosed with Autism in 1950 at age 2.

no limits!

Support Different-Ability Awareness

psn

center services

Special Resources Planning Services: Financial & Legal Counsel

SPECIAL NEEDS ALLIANCE THE OKLAHOMA DISABILITY LAW CENTER

THE SPECIAL NEEDS PLANNING CENTER AT COMMUNITY AMERICA The Special Needs Planning Center was formed specifically to work with families who have children with special needs. The firm was created out of the need for a comprehensive planning service which would assist families in coordinating their legal and financial planning with the intent of preserving government benefits such as social security your child(ren). 1251 NW Briarcliff Parkway, Suite 110 – Kansas City, MO 64116 TEL: 816-741-1100 E-mail: hburch@cacu.com www.cacu.com/special-needs

Oklahoma City Ofﬁce 2915 Classen Blvd 300 Cameron Building OKC, OK 73106 TEL: (800) 880-7755

RESPECT ABILITY LAW CENTER 2007 Guthrie Avenue Royal Oak, Michigan 48067 TEL: 248-544-7223

PROTECTED TOMORROWS, INC. 103 Schelter Rd. Lincolnshire, IL 60069 TEL: 847-522-8086

The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our member attorneys have family members with special needs; all of them work regularly with public benefits, guardianships/ conservatorships, planning for disabilities and special education issues. We volunteer significant time to the special needs community and advocate for legislative and regulatory change to improve quality of life for individuals with disabilities. TEL: 1-877-572-8472 info@specialneedsalliance.org www.specialneedsalliance.org

RUBIN LAW 1110 West Lake Cook Road Buffalo Grove, Illinois 60089 TEL: 847.279.7999

Photo Courtesy Facebook friends PSN “Wordless Wednesday” PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

SPECIAL ADVERTISING SECTION

ACADEMY OF SPECIAL NEEDS PLANNERS

QH[W LVVXH·V

special

16 N Marengo Ave Suite 602 Pasadena, CA 91101 TEL: 626-432-1699

SPECIAL CONSIDERATIONS Special Considerations is committed to serving individuals with intellectual and developmental disabilities. We strive to provide a seamless and comprehensive plan to remove the ﬁnancial and emotional burdens created by unexpected loss. By utilizing our 16 years of experience and personal relationships with the Special Needs Community, Special Considerations is truly able to serve every individual and organization in need. 2773 S. Queen Street Dallastown, PA 17313 TEL: 1-800-405-4232 agrove@specialconsiderations.com www.specialconsiderations.com

LAW OFFICES OF JONATHAN S. CORCHNOY

resources

515 Market Street Suite 1510 Philadelphia, PA 19102 TEL:215-266-7872

SPECIAL NEEDS TAX CREDIT ALLIANCE 4673 Brady Boulevard Delray Beach, FL 33445 TEL: 561-865-2921

EPPY FINANCIAL GROUP 1000 Corporate Drive FL 33334 TEL: 954-689-9476

Camp, Travel, Destinations

HARRY S. MARGOLIS Margolis & Bloom, LLP 535 Boylston Street Boston, MA 02116 TEL: 617-267-9700

Special Advertising opportunities available.

SHERI L. HAZELTINE & ASSOCIATES, P.A

800 Palm Trail Plaza, #3 Delray Beach, FL 33483 TEL: 561-243-4655

sales@parentingspecialneeds.org

A SPECIAL NEEDS PLAN 1522 Napa St. NW Concord, NC 28027 TEL:800 769 8610

COMMONWEALTH COMMUNITY TRUST (CCT) 800 Palm Trail Plaza, #3 Delray Beach, FL 33483 TEL: 561-243-4655

Join our Resource Center Please contact us for details

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

IEP PREPARATION

THE

MAMA BEAR STRATEGY

How to hide your claws and get what you want! by Cynthia Carr Falardeau u

am an equal opportunity offender. I can’t help myself. I can be calm and collected in many intense business settings. However, when it comes to my son, hell hath not seen the furry, of my Mama Bear rage! The first time I attended my son’s IEP (Individualized Education Plan) I thought I was calm and collected. You could even say that I was “cool as a cucumber”. I was prepared and had all of the test results from private providers and experts in the field of Autism Spectrum Disorders. I presented the findings with the professional polish I did in my every day work life. I paused and turned to the Student Support Specialist. He responded, without emotion, “What do you want us to do with this”? As I began to feel the veins pop out of my neck, I managed to say, “Excuse me”? He replied, “We don’t have to do all of this, we only need to do what we can, which will have to be enough”. “ENOUGH”? It was the first time in my life, EVER, that I contemplated reaching across the table and grabbing a person’s neck! My entire life my mid-western parents had drilled into my head that just doing “enough” was not “good enough”! I wanted to shout, “Why in the world would I settle for, ‘enough,’ for our son”? Surely this school district person would not be happy just being paid “enough”! In fairness to the Student Support Specialist, and my local school district, that is how I perceived the

26 40

PARENTING PARENTING SPECIAL SPECIAL NEEDS.ORG NEEDS.ORG

NOV?DEC2014 2012 JAN/FEB

situation. on. I do recallll iit with i h great clarity. l i P Perhaps h he h needed that day I realized d more coaching? hi ? However, H th t d li d two things: I needed to ﬁnd a better way to prepare for my IEP’s and I needed a more strategic manner to advocate for our son. That was seven years ago. I am not an expert, an educator, or an interventionist. I am just a Mama Bear. Everything I have learned has been initiated on my own. What I have learned is that you have to build relationships to gain partners in the cause to advance your child’s success. It sounds pretty simple. However, even though I feel we have been successful, I have managed to offend and alienate on a regular basis. What I do know as time shrinks for educators to plan and collaborate – so does the period allowed to bring teams together for an IEP. Without placing blame, many IEP’s have evolved into what I refer to as the “Revolving Door”. By that I mean that a few key people lead the IEP as teachers and support personal enter on a rotating basis. The reality is that there are a limited number of minutes in the school day and even fever people to cover for educators so they can participate. What I have learned is that you can schedule an efﬁcient IEP meeting during a 45 minute block.

However, you, the parent, need to do the leg-work and lead the meeting by engaging the support of the school team. It sounds like a tall order. However, I promise you that it has big pay offs, and you gain the input and beneﬁt of problem solving of those who work with your child (in the room at the same time). The other outcome is that if you set a time limit, the participants will hold each other to the timed agenda, created by you and the team, in advance of the meeting. Now for a reality check. You can’t achieve this if you don’t spend time investing in the following preparatory tips. Again, I struggle to manage my emotions, but because I am in contact with my son’s team, they “get me”. It also helps that I bake for them on a regular basis. Never underestimate the absolution of a great cookie!

Here are my tips for IEP preparation: 1. Have the Meetings – Before “the” Meeting: If

you do nothing else on this list – take the time to do this! Having meetings in advance of the IEP brings you a clear update of how your child is performing. It is also an opportunity to share your concerns and vision for your child’s academic future. The meetings could be by phone or in person. Avoid email as it can be ﬂat and void of emotion. It also takes away any surprises that can derail an IEP meeting. Publish an agenda: Lay it all out on the table! I always write up an agenda of what I want to cover in the IEP. It can be hand-written or typed. Basically, it recaps the accomplishments of our child: academically and non-school related. It also breaks down the goals on the IEP. I list my concerns and my ideas on how we can help move my child towards mastery. The non-academic achievements have helped the team identify motivators and strategies. Review the Data – Make it Work for You! I have a slippery love affair with data. Sometimes I want to cover it with kisses and other times I want to banish it from my memory. Take the time to review bench mark or progressive test scores. Look for advancement and think about how you, the parent, can be a partner in advancing those gains. Last month, I think I was the only parent celebrating that my son was at the top of the red

(danger) zone! It had been a hard climb, but, we are getting closer to the “green” zone. Bottom line – be, or become, an optimist! Identify the Protagonists – Kill them with Kindness (Chocolate or liquor is also an option): I often say that there is always a naysayer. These are often categorized as “data people” or “Assistant Principals.” Nonetheless, you have to gain them on your team. Figure out how to “reach them”. Be realistic BUT have a vision: Map a plan of success: You, the parent, know your child better than anyone. If you don’t have a clear vision of what you want for your child – then how (in the heck) do you expect anyone else to? Have the courage to follow your heart and set the bar high. You may not get there, but I guarantee, you will come pretty darn close. The process will make believers out of those listed in point #4. Know the rules of the game AND when to call in the “troops”. Despite e your efforts, there are times when singing “Kumbaya” (a spiritual song) does not rally the team. It’s helpful to have an “outside advocate”. This could be another school or district person you trust. It could also mean you need to have a separate meeting with decision makers to review the policy or procedure. For example, a very caring team wanted our son to take an alternate assessment. They did not realize that what they were proposing, out of love, could derail him from achieving a standard high school diploma. Avoid email and Facebook – commit to face-toface discussions: It’s only natural to post some cryptic message about your feelings. However, your followers know you too well. So if you are feeling upset - just pick up the phone or try to stop by the school at an appropriate time. Y

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

health & ﬁtness Nutrition

GLUTEN-FREE

for Weight Loss?

by Christina Bartlett, RD, LD

irst off, what is gluten? Gluten is a protein found in grains such as wheat (all types, including einkorn, emmer, spelt and kamut), barley, rye, triticale and some oats. A gluten-free diet is used to treat celiac disease or gluten sensitivity. Gluten causes inflammation in the small intestiness of people -free diet with celiac disease. Eating a gluten-free helps people with celiac disease control ntrol vent their signs and symptoms and prevent complications. A gluten-free diet has many s, healthy food options, such as beans, peas, nuts, seeds, fresh eggs, fresh lean sources of protein, fruits and vegetables and most dairy products. Many starches can be part of a gluten-free diet such as quinoa, flax, rice, buckwheat, millet, tapioca, corn and cornmeal, amaranth, sorghum, arrowroot, teff and soy. Following a gluten-free diet can be challenging because wheat omee om products go by numerous names. SSome of the products to avoid include bulgur, durum flour, farina, graham flour, kamut, semolina and spelt. If you are an uncertain on a specific product, check to see if it is labeled gluten-free. When following a gluten-free diet it is important to get enough B-vitamins (thiamin, riboflavin, niacin and folate), iron and fiber. Aim to choose whole grain, gluten-free products. Look for products containing whole grain corn, whole grain rice, millet, teff or sorghum. Look for enriched, gluten-free products instead of refined, unenriched products whenever possible. Consuming foods made with alternative plant foods, such as quinoa, amaranth and buckwheat will help to enrich your diet with fiber, iron and some

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

B-vitamins. Don’t forget to fill your plate up with lots of color from your fruits and vegetables. All of these options allow you to add more variety, pus enrich your diet with the vitamins and minerals your body needs. As you review the foods that are recommended, foll you can see how following a gluten-free diet could result in weight loss. The consumption res of processed foods is decreased and a fiber is increased. Increasing th the consumption of whole foods and limiting processed foods is not a new concept. This is what is recommended across the board. Unfortunately, there is not eenough research specifically stating that following a glutenfree diet is proven to promote weight loss. Following a particular diet that other people are following is not going to lead to the results you y are looking for. You may need dif different nutrition recommendations based on a current health diagnosis, your height, weight, age and level of physical activity. You also want to think about your current eating pattern and how you could further modify it based on your goals. One diet does not fit all. Plus, you don’t want to go on a diet. Sometimes when you tell yourself you are on a ‘diet’, this places your mind in a restrictive state. This can lead to overeating and bingeing on foods that you think you are not allowed to have. Everything in moderation is the key to success! Y Christina Bartlett RD, LD is a Registered Dietitian and the owner of Everything In Moderation. Dedicated to providing nutrition information that is tailored to the individual. Visit: www.eimnutrition.com

I learned late in life “that heart disease is my greatest health threat, which is why I want every woman to know the truth – that heart disease is their number one killer.” Star Jones wants you to know that more women die of heart disease than all forms of cancer combined. This killer isn’t as easy to see and is often silent, hidden and misunderstood. Join Star to stop the No. 1 killer of women. We can be the difference between life and death.

Star Jones, Heart Disease Survivor and National Volunteer for the American Heart Association

Uncover the truth about heart disease and how you can help at GoRedForWomen.org.

Fitness Every Day Flow Chart: A Guide for You (Yes, You) by Eric Chessen, M.S., YCS

f you do not think fitness is an essential part of optimal development and lifelong health, skip this. This is a plan for developing and integrating fitness into the home, classroom, fitness, or therapeutic environment. Now here’s the thing; given the vast differences among the autism population with respect to physical abilities, motivation to move, and learning skills, cookie cutter programming approaches just don’t work, nor will they ever. So this “Fitness Every Day” thing is about taking into account how to best consider and deliver who needs what. Parents. I’ve met a few who are quite proactive with physical activity, understand and benefit from regular physical activity, and want to include their children with autism. Cool. We can totally do that.

Here are the environmental factors: - Space - Time - Equipment - Participants

Trouble Shooting:

Here are the Individual factors: - Current physical ability - Current adaptive ability - Current cognitive ability (with relation to learning style and motor planning)

Here’s your In the Home If/Then Breakdown: IF you have a little bit of space you can clear out on a regular basis (I’m accustomed to working in some very tight areas and still managing to get some med ball throws going), THEN you can have family ﬁtness fun in the home. IF you can set aside anywhere from 10-30 minutes each day (you can even break it up into 3-5 minute chunks), THEN you can use the space as a “movement zone” on a regular basis

PARENTING SPECIAL NEEDS.ORG

IF you invest in a couple pieces of highly-adaptable equipment (Dynamax med ball, Sandbells, a couple of cones and low hurdles), THEN you have, at your disposal, a wide array of possibilities for ﬁtness fun IF you have a few willing participants (yourself included), THEN you can begin using the aforementioned equipment for ﬁtness and active play each day

JAN/FEB 2014

Space: Space issues can be a concern, but creativity and the ability to move furniture can have a delightful effect on accommodating a ﬁtness program. All things toe-stubby, sharp, and just in the way should be, even temporarily, moved aside. This in itself can be part of the ﬁtness program. How fast can family members move an ottoman?

fun fitness health & ﬁtness Time: Don’t have a solid 45 minutes to devote each

Current Cognitive Ability: We learn best when

day (or at least a couple days a week)? Chunk it up into 5-10 minute movement segments. One of my favorites was a family who had their kids bear walking into the kitchen for meals. Hungry bear party rules. Chunking time also alleviates some of the issues that occur when kids/teens/young adults ﬁnd long periods of instruction or other imposed activity aversive.

taught in a way that coincides with our learning style. Visual cues for more visual learners, kinesthetic cues for those of us who need to feel our way through activity, and, while rarely applicable, auditory learners need to hear instruction. Now with regard to fitness and movement, demonstration is essential. Few, few individuals will know what is expected if you just say “Do five frog hops!” and they’ve never done, seen, heard of them before. Knowing how many steps, on average, an individual can keep in mind is also important. Giving 3-step directions (pick up the ball, do a push throw, then step over the hurdles) is not going to work for a learner who has difficulty beyond 1 or 2-step sequences. Once they become familiar and fluent with specific exercises, you can progress to activity “chains” that include several different movements. This not only promotes greater physical ability, but motor planning and activation in the areas of the brain responsible for short-term memory. Of course, having discussed the visual aspect of fitness, it would make little sense not to provide a few ideas for exercises and activities that are great for inhome programming. I’ll be putting up a video on my blog (EricChessen.com) with some exercises, along with their progressions and regressions. The goal for 2014 is to make fitness and active play more understandable and accessible to the autism population, parent, educators, and professionals. With some planning and persistence, fitness becomes fun, and something that can bring us closer together in numerous ways. Y

Equipment: Some of these things you can make yourself from supplies purchased at your local hardware/sand depository/PVC pipe rental facility. I would recommend, if possible, purchasing a few items from the equipment list above. It can all be used at any level of ability, and, treated with slightly less than hyena-grade contempt, will last a very long time. Participants: Gotta be in to win. No one will do it for you (I will, but only in the Long Island, NY area, and even then time is limited). Home fitness programs ensure that you know what’s going on, when it’s going on, and how it’s going. Other household members can be helpful (and healthy) with active participation. Fitness and active play are usually more fun with others involved. Usually. Current Physical Ability: What can she/he do right now with regard to different movement patterns? Can they bend, push, pull, throw, catch, crawl, climb, jump? If yes, use the skills they have and begin to progress things (add one movement to another, for example, a bear walk followed by jumps or push throws with a big ball), if there are some movement and/or strength deficits (often the case with the ASD population), regress to the current level of ability. For example: Rather than jumping forward 2 feet, place spot markers/cones 1 foot away or less. Early success leads to less frustration and more progress, a combination I tend to favor only because it makes sense. Current Adaptive Ability: No motivation to perform new activities? Start off with very short periods of instruction/activity. Allow for exploration. Scatter some equipment around and see what they gravitate towards. It may be indicative of something that can be reinforcing. Just because something is aversive/wholly unlikable at first, does not mean it will remain that way until the end of time. Steady exposure to new activity builds confidence and familiarity, both of which help to sustain interest over time (i.e., long-term healthy lifestyle).

Eric Chessen, M.S., YCS Eric Chessen, M.S. is the creator of the PAC Profile Assessment Toolbox (www.PACProfile.com), PAC Profile Workshop series, and consults with special needs programs around the world. Available on www.Autismfitness.com

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

by Barrie Silberberg

ne of the most frequent comments that I hear when I help people get started on a chemical free/GFCF (Gluten Free/Casein free) diet is that it will cost too much money and that they cannot afford it. If one only purchases ready-made foods, then, yes 100% natural foods that are GFCF will often cost more. But, one does not have to purchase packaged foods and there are many helpful hints available to make changing your food lifestyle, not only into a much healthier diet, but you will save money in the long run. The goal is to be off all medications and not have doctor bills following you into adulthood. Spending money on healthy food today, can help keep the doctor away in both your and your child’s future. Chemical-ﬁlled foods cause many stomachaches, headaches, nausea, acne, hyperactivity, loss of focus, aggression, impulsivity, poor sleep habits, bed-wetting issues, abusive behavior, mood swings, irritability, hurting others and/or oneself, sensory challenges, meltdowns and many more issues and difﬁculties. Many doctors are quick to prescribe medicines, which have been know to cause some bad side effects. Many parents keep their children on these drugs for 10 or more years with harmful, lifelong effects. These drugs often rob children of their personalities, making them into zombies or robots. These sites list many medications and the adverse side effects that they have. http://www.rxlist.com/script/main/art. asp?articlekey=104501 , http://www.choosenatural. com/adhd/adhd-medications/ Medications are also very costly! Look at all of the money that the BIG

46 PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

pharmaceutical companies spend on advertisements on TV and in magazines. Consumers are helping to fund these advertisements. Maybe if people read labels and cared about what food went into their family’s bodies, they would not only be happier and healthier, but they would save money! We all need food to survive. Why not keep it as natural as possible? So many families that I help comment on so many changes that they see in their children once they clean up the food that goes into their bodies. Most kids and adults will be resistant, but you have to persevere. So many people are addicted to the horriﬁc foods that are bought on the shelves or purchased in restaurants. Change can happen! What I suggest to people is to read labels. Buy foods that list only a few ingredients, or better yet a single ingredient. Also, do NOT buy foods with ingredients that you cannot pronounce. This is a hint that it is a chemical. Buy potatoes, rice, meat, chicken, vegetables and fruits. Be creative. Go online. There are hundreds of thousands of recipes at your ﬁngertips. Try to go to healthier markets to buy your foods, as well as farmer’s markets. Keep costs down by looking at advertisements for sales. Keep items that you will p g This not be eating right away frozen to avoid spoilage. saves a ton of money. Thousands of dollars of food are tossed into the trash weekly. Be creative. Make your food look good and fun, especially if you have young children. ©wayne ruston/photo xpress

special diets health & fitness meals from scratch. Baking from scratch might be time consuming, but you will know what is inside the desserts. Keep GF flours in your freezer to extend their life and keep them fresh. Pre-mix the flours so you are ready to just grab your own mix and bake away. Premade mixes that you buy in the stores can cost a fortune. If a food that your family likes is on sale and can be frozen or kept on a shelf for a long time, buy extra for the future. Check online sites for groceries… often you will find free shipping and reduced prices. Compare what your local store charges with online sites. The difference might just surprise you. Take time to research your food and ingredients. Look for sales. Look for healthy ingredients. Shop the outside aisles of your markets (healthier foods are there). Be creative, have fun, save money and feel better!Y Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-byStep Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others Interventions. Her web site is: www.puttingyourkidsfirst.com

March to a different drumstick. Go meatless Monday. One day a week, cut out meat.

Try for one week to only prepare food at home. See if you see a change in your child. Cook, bake and try to use only natural ingredients. Pack everyone’s lunches. Keep healthy; have easy to grab snacks available such as, apples, oranges, mandarin oranges, baby carrots, cut-up jicama, nuts, and cut-up fruit. Keep everything in closed containers for freshness. Try serving protein in a variety of ways: Dip into eggs or olive oil, then cover with bread crumbs or crushed healthy cereal and bake, stir fry, bake with a favorite 100% fruit jam or 100% natural salad dressing, cook on the stove with natural broth, add vegetables or fruit. Use ground turkey or lean beef in marinara sauce with natural pasta (whole grain or rice), make your own burgers, make burritos, roast a chicken or turkey. Use beans or other proteins for dinner. Make chili. Use a crockpot for meals to come home to that are already cooked. Buy cookbooks or use your library or online sources for recipes. Ask your family members to help locate recipes and help with preparations. Do not think about prepared meals or eating out--that is where the expense lies. It does not come with natural, healthy foods that you create your own

by Criste Cristen Reat

ith the beginning of each new year often comes the urge for us to make a fresh start by making lists, creating plans, and getting organized…sort of “out with the old, in with the new” mentality. In the midst of all this planning and organizing, let’s make time to have fun with our loved ones by playing a game during these long winter nights. Many of the traditional board games and card games now have tablet versions, making game playing an accessible and fun experience for the whole family. We have created a list of some of our favorite app games that are not only fun to play, but also, build important skills like problem-solving, patience, storytelling, turn-taking, vocabulary development, and cooperation. Take a break and play a game!

UNO HD

MemoryBlock M

by Gamelot TThe tablet version of UNO is similar to the traditional card game of matching numbers and/or colors. It is a fun early learning game ffor up to 4 players. It has easy to follow rules and is a fun activity to work on turn taking. There is a multi-player option on a single device or everyone can use their own devices to connect locally using Wi-Fi connection. The app is available in multiple languages, including Spanish and German. Price: $4.99 IOS: https://itunes.apple.com/us/app/uno-hd/

b Category 5 Games by Remember the electronic game Simon? Well R here it is in an app format! This is a memory h g game that creates color sequences for players tto mimic. In other words, it creates a pattern that you have to remember to touch the screen in the same order. It can be set to 4 different tones and speeds depending on the player’s ﬁne motor, visual discrimination and memory skills. It is a fun way to test memory and work on color identiﬁcation with no reading required. Price: FREE IOS: https://itunes.apple.com/us/app/memoryblock/

id364368518?mt=8

Android: https: //play.google.com/store/apps/ details?id=com.gameloft

details?id=com.Category5Games.MemoryBlock

Full review:

http://bridgingapps.org/app/?id=364368518

http://bridgingapps.org/app/?id=351705979

Toontastic T

Mr. Potato Head Create & Play M

b Launchpad Toys by TToontastic is a creative storytelling app that eenables children to draw, animate and share ttheir cartoons. Making cartoons is easy. You can rrecord your voice, move characters around and tell a story. The app records the animation and voice as a cartoon video to share with friends and family. You can use your device’s camera to add family faces to characters and customize your story complete with special effects. You can even make your own customized cards to share. Price: FREE IOS: https://itunes.apple.com/us/app/toontastic/ Full review:

b Originator Inc. by Mr. Potato Head is an app built on the M ttraditional Mr. Potato Head toy. After making a silly character, the child can take photos of his/her creation to share and play with the character in a variety of scenes. This app is a fun way to work on vocabulary and identifying body parts. It can also be used for working on following increasingly complex commands from a caregiver. An example of this is: Give Mr. Potato Head a red hat and 2 brown eyes. Mrs. Potato Head Create & Play is also available on iTunes by Originator Inc. Price: $6.99 IOS: https://itunes.apple.com/us/app/mr.-potato-head-

http://bridgingapps.org/app/?id=404693282

create-play/id577912498?mt=8

id404693282?mt=8

26 48

id351705979?mt=8

Android: https://play.google.com/store/apps/

PARENTING PARENTING SPECIAL SPECIAL NEEDS.ORG NEEDS.ORG

NOV?DEC 2012 JAN/FEB 2014

Full review: http://bridgingapps.org/app/?id=577912498

Toy Story: Story Theater T b Disney by Kids can create stories using the beloved Toy K SStory characters and backgrounds. The child ccan choose the setting, characters, props and aactions. Kids can build stories and then can record their own voices while moving the characters and props through the story. The app is especially valuable for early childhood because it allows multi-touch (multiple ﬁngers or styluses can touch the screen at the same time) so a parent, or older child, can play along with the child. There is also an in-app guide that gives parents ideas for ofﬂine activities to continue working on similar skills. The app is easy to use and very engaging due to the excellent graphics and easy to use interface. Price: $2.99 IOS: https://itunes.apple.com/us/app/toy-story-storytheater/id610049013?mt=8 Android: https://play.google.com/store/apps/ details?id=com.disneydigitalbooks.toystorytheater

Full review: http://bridgingapps.org/app/?id=610049013

My PlayHome Stores M b Shimon Young by My PlayHome Stores allows for pretend play M tthat involves moving characters through 4 sstores along a city street including: an ice ccream parlor, grocery store, clothing store, and fruit stand. There are many wonderful interactive features of moving items in and out of carts, choosing new clothes, picking up items, etc. One favorite feature of young users is being able to shop in the stores and then take the goods home to the house located in the companion My PlayHome app. Children can engage in pretend play, and the app supports multiple users by allowing multiple touches on the screen at the same time, making it a fun way to work with a sibling, friend or caregiver. The app is a helpful tool for practicing labeling, developing conversation, greetings, categories, and pronouns. Price: $1.99 IOS: https://itunes.apple.com/us/app/my-playhomestores/id683942610?mt=8

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

Full review: http://bridgingapps.org/app/?id=683942610

F Futaba Classroom Games ffor Kids b INKids by FFutaba Classroom Games is a fun and iinteractive app that promotes learning by sstrengthening key K-5th grade concepts in an engaging game. The app includes upper and lower case alphabet matching, Dolch site words, money, telling time, and much more. It can be used by up to 4 players and is customizable, so you can create your own content within the app. Note that the games are formatted as a timed game, so it could be a challenge for those with processing difﬁculties. It is helpful for encouraging social interaction, turn taking and teaching the concept of waiting for others. Price: $6.99 IOS: https://itunes.apple.com/us/app/futaba-classroomgames-for/id487979995?mt=8

Full review: http://bridgingapps.org/app/?id=487979995

P Phonics Tic-Tac-Toe IInteractive Game b Lakeshore Learning Materials by TThis Tic-Tac-Toe game focuses on identifying b beginning and ending phonics sounds, blends, d digraphs, and syllables. It is a game that can be played with two people or in a team setting. This app requires players to be able to read, as the application does not have any sound for reinforcement. It is a helpful application to promote independent reading while building language skills. This app would be good to use with a caregiver. or in a classroom environment, with language arts centers to reinforce reading skills already mastered. Price: FREE IOS: https://itunes.apple.com/us/app/phonics-tic-tac-toeinteractive/id465184366?mt=8

Full review: http://bridgingapps.org/app/?id=465184366

If you are interested in searching for more apps, or, creating your own list of apps and sharing them, please go to BridgingApps.org. BridgingApps (a program of Easter Seals Greater Houston) is a community of parents, therapists, doctors, and teachers who share information about using mobile devices (iPad, iPhone, and Android) with people who Cristen Reat is co-founder of BridgingApps and a mother who found success when using a mobile device with her children who have special needs.

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

fun & functional learning to sign

ASK Angie ASL -Reading Tips by Angie Craft HandCraftEdASL

The handicap of deafness is not in the ear; HandCraftEdASL

it is in the mind. ~ Marlee Matlin Resources: ADCOHearing.com – Specializing in Products for Deaf and Hard of Hearing People Harris communications.com - equipment and products designed for deaf and hard of hearing individuals.

“Reading with good comprehension requires the ability to think beyond the text. True comprehension occurs when the reader can connect the related schema in his brain to the sentence.The Deaf student who does not have full access and practice to incidental English does not know the English hierarchy of classifying, categorizing and group membership of common words. This has an impact on reading that starts at the early stages of literacy development.”(Kristin Di Perri – The Bedrock Approach)

Your Homework assignment:

HandCraftEdASL.com – any of my products are great for hearing and deaf children / siblings.

Provide explicit direction in the areas of Superordinate and subordinate nouns with our deaf students / children. Make a trip to the grocery store an educational experience by using the sections of the supermarket as our Superordinate groupings. Discuss the different types of “meats” and the different between the fruits and vegetables.

Rule-the-School.com – deaf education products

Here are some Superordinate Category Ideas:

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

VIDEO DEMONSTRATION:

PARENTING SPECIAL NEEDS.ORG

Color

Animals

Money

Restaurants

Stores

Numbers

Pets

Weather

Vehicles

Countries

Letter

Superheroes

Fruits

Insects

Work

Food

Meat

Vegetables

Uniforms

Sports

As always, if you have any questions you can email me @: handcraftedasl@me.com Y JAN/FEB 2014

power of play fun & functional

Making a

WIGGLY WORM TOOTHPICK ART &

While Waiting in a Restaurant

aiting is not easy for children. Their energy level can be telling them to get up and go when the moment calls for sitting and waiting. If you are at a restaurant—and even fast food restaurants may require some sitting quietly time—here are some good distractions to bring in the clowns, as it were, and have some fun. In this game that encourages focusing and increasing your child’s attention span, all you need are wrapped straws and a glass of water and you can turn a straw wrapper into a surprising creature. Get a straw and instead of pulling off the paper cover, squish it off so that it forms accordion pleats. Then, put the straw into a glass of water. Put your finger on the top of the straw so it traps a little water in it. Hold the straw over the squished straw wrapper and pick your finger up so a few drops fall on the wrapper. The wrapper will almost magically move like a wiggly worm. After you have demonstrated, let them try doing it themselves. They will discover by experimenting that a little water makes the worm move, and too much water drowns it. This discovery will make them more aware of how much water they are trapping and what to do to get more or less water in the straw (also good for another ten minutes of quiet).

by Barbara Sher If you find you’re starting to feel g guilty because your child is overly enthusiastic about this game, and e using too many of the restaurant’s straws, change the activity. See if s your child can take water from one y g glass and fill up another using her newly learned straw-filling skill. Or, introduce a new game called Toothpick Art. Besides being fun T and a making waiting easier, it a encourages fine motor skills also of o dexterity and finesse and the w wonderful attribute of creativity. All you need are some toothpicks which restaurants usually have. w Y can make specific things such You as a shapes, squares, rectangles, t triangles, etc. or letters that work well w with straight lines, such as E, F and a M. You can also just make a design. Cooperative designs are fun with C e each person, in turn, adding a toothpick to make an interesting t pattern or until the food finally Y arrives! a Barbara Sher M.A.,O.T.R, an occupational therapist and author of nine books on childrens games. This game is adapted from Barbara’s new book THE WHOLE SPECTRUM OF MOTOR, SOCIAL AND SENSORY GAMES: Using Children’s Natural Love Of Play To Enhance Key Skills And Promote Inclusion. Check out Barbara’s other game books at any on-line bookstore or get a free game designed for your child at her web site: www.gameslady.com

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

Easy Baked Turkey Meatballs Encouraging Speech & Creating Yum!

by PSN Team & Becca Eisenberg

Ingredients UÊÓÊ LÃÊ}À Õ `ÊÌÕÀ iÞ UÊ£ÉÓÊVÕ«Ê >Ì i> Ê Õ V i`® UÊ£ÉÓÊVÕ«Ê}À>Ìi`Ê *>À iÃ> ÊV iiÃi UÊÓÊi}}Ã UÊ{ÊÌÃ«Ê Vi`Ê}>À V UÊ£ÊÌÃ«Ê`À i`Ê Ê « Ü`iÀ

eatballs don’t have to just be spaghetti’s “sidekick”. These turkey meatballs can take center stage in any dish you create. Get creative and let the good times rock & roll.

UÊ£ÊÌÃ«Ê`À i`Ê«>ÀÃ iÞ UÊ£ÊÌÃ«Ê`À i`Ê Ài}> U£ÊÌLÃ«ÊÃ> Ì

Cooking Time: 20 minutes

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

Language Time: Instructions Parent: Preheat oven for 400 degrees. Parent/Kiddo- Line baking dish with tinfoil, or

spread olive oil on bottom of 13 x 9 baking dish. / «\ Line pan with tinfoil for easy clean up.

Parent/Kiddo-Measure out all ingredients and

thoroughly mix all of the ingredients together in a large bowl. Use a large serving fork (or clean hands) to mix ingredients together.

Kiddo-Using a cookie scoop, scoop mixture into

meatballs and place them into the baking dish closely together. If you do not have a cookie scoop, just roll the mixture into golf ball sized meatballs and place them into the baking dish.

Parent-Cook the meatballs in the oven for 20 minutes.

Once the meatballs are cooked, serve them with spaghetti and sauce, or, as part of a barbecue meatball slider. You can enjoy them by themselves, or however you please! Store extra meatballs in Ziploc bag in the freezer for a quick meal.

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

Cooking together is a great way to bond with your child and work on facilitating language. It’s a perfect opportunity to expand on your child’s vocabulary and be involved in a fun and interactive activity. There is also a reward in the end:meatballs! Before beginning the recipe, review the ingredient list with your child. This will help prepare your child for cooking and become familiar with the ingredients. Discuss food groups and ask your child what ingredient belongs in each group (e.g. tell your child “Dairy is a food group. Milk and yogurt are in that food group. Can you ﬁnd an ingredient that belongs in that group?”). As you are reviewing the ingredients, explore them by looking, smelling and touching them. Describe the ingredients by giving your child models (e.g. the parmesan cheese feels powdery, the garlic feels smooth, etc). Model various actions that are occurring as you are making the meatballs (e.g. measure, pour, mix, scoop, bake, etc) Have your child help with measuring each ingredient and taking turns. Use different strategies to help elicit language (e.g. put the whole egg in the bowl and wait for your child to tell you to crack the egg). Give your child the opportunity to ask for help and problem solve through speciﬁc situations. Since many children are visual learners, it can be helpful to take pictures as you are preparing the recipe. Use the pictures in a social story to retell to other family members, teachers, etc. With the pictures printed out, have your child create a sentence about each picture and create a book. The book can also be very useful the next time you make meatballs together.

Carryover Picture Books: º Ê Õ`ÞÊ > ViÊ vÊ i>ÌL> Ã»Ê by Judi Barrett º-«>} iÌÌ Ê> `Ê i>ÌL> ÃÊv ÀÊ » by Marilyn Burns Y

JAN/FEB 2014

PARENTING SPECIAL NEEDS.ORG

proud moments® enjoy your life

Sharing“I CAN!”attitudes Happy Feet! Attached is a picture of my son, Benjamin, who is 4 years old. This picture was taken over the summer. It holds so much meaning for us that I felt compelled to share it with our special needs parenting community. Ben’s main diagnosis is CP. He has always worked very hard for everything he has; it had taken him nearly 2 years to learn to just sit up on his own. Ben had just begun to use his gait trainer at the beginning of the summer. We practiced walking every day, even though on some days Ben complained about doing it. He is always happy and proud once he realizes he is moving himself independently. On the day this picture was taken, it was the end of the summer, and it was the first time we had taken the ankle straps off of his gait trainer. He was SO pleased that he was moving his feet himself without ANY assistance on his feet! He kept looking down at his feet, and when he finally looked up, that’s when this picture was taken, with the BIGGEST smile on his face!

Benjamin exhibiting an “I CAN” attitude Photo courteousy Jennifer Adams

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

We are filled with love, pride, and gratitude that God has blessed us with Ben. The joy in his eyes in this picture is just one testament to the amazing power of love and acceptance that empowers us all to just keep moving. Y ~ Jennifer Adams (Proud Mom)

Tying it up! Keiondre (Dre) is 13 and was diagnosed with autism at the age of 4. His pediatrician had doubts about Keiondre ever being able to talk and do things independently. He proved all doubters wrong. We had been trying since he was 6 to tie his shoes. He had trouble with coordination so we used the twist laces. We never gave up. Now that he is older and understands much more, it became fairly easy to tie with the help of occupational therapy. He is so happy and loves to show it off. Y ~ Lativia Merchant (Proud Mom)

Keiondre (Dre) exhibiting an “I CAN” attitude Photo courteousy Lativia Merchant

PARENTING SPECIAL NEEDS.ORG

JAN/FEB 2014

PSN APPS & MORE

See your app here, we can help!

contact: sales@parentingspecialneeds.org NEW Special Rates Let our readers know you exists. Your ad needs to be here!

Thumbs Up

TO ALL OUR PARTNERS, HELPING US TO UNITE THE SPECIAL NEEDS COMMUNITY To inquire about becoming a PSN Partner for PSN Parents, email: info@parentingspecialneeds.org