Parenting Special Needs by Ahren Hoffman

4 ( 2 ) 6 ) . ' s ) . & / 2 - !4 ) / . s ) . 3 0 ) 2 !4 ) / .

The magic of

-USIC dance & movement

Summer Preparation Starts Now!

Success on the

Potty

Tips for successful toilet training

8[Xgk\[ G_p% <[% Is it in your childâ&#x20AC;&#x2122;s IEP?

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.

inside this issue... Mar apr 2013

Features 17

Real Moms Share Featuring Michele Gianetti Shares about believing in her daughter

Success on the Potty

It’s Not Rocket Science

Promoting Executive Functioning

Tips for determining readiness and successful toilet training. The Art of Planning Good Meetings between Home and School Teams

Over the Summer

42 61 24

psn community news Did You Know there is a guide to help ﬁnd and keep a job for those students with cognitive disabilities?

Noteworthy! Bioness gets FDA Clearance for Children who have Foot Drop “30 Under 30 Campaign New EZ rider Wheelchair

it out! 12 check Products You Can Use & Win!

real life Relationship Rescue Sleep Away Camp: Is your child ready?

26 COVER IMAGE Courtesy of Christine Reynolds

Ask the NURSE

Ask the Nurse Searching for a suitable summer camp

Proud Moments

Sharing “I Can” Attitudes

MAR/APR 2013

PARENTING SPECIAL NEEDS.ORG

inside this issue... your life

28 30 31

Mommy Time Outs Rocky Mountain Treasure

Sharing real ﬁnds Help for busy moms

Organization Tips Summer Preparation: 8 Steps

special focus

34 36 38 40

Tiny Light: Harrison Autism, ADHD, Anxiety Disorder & Silent Seizures

Sensational Musical Magic of Paul McCartney

I Feel Like Dancing Adaptive Dance & Dance Movement Therapy

Champion for Mallory Donnie Osmond

health & ﬁtness

Super Health

Special Diets

Encouraging Your Child to Stay Active Year Round For a Variety of Disabilities & Disorders

Adapted Phy. Ed. Is it in your child’s IEP?

fun & functional in every issue

6 7 8 9 48

psn contributors from the heart contest/giveaways facebook shares psn apps & more

56 57 58

Yoga Poses & Tips: Encouraging the unique gifts among 2e kids and beyond.

Power of Play Postcard Diaries & Memorabilia Bags

“Foodie” fun for kids: Rice Tortilla Pizza

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MAR/APR 2013

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

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psn contributors making a difference FOUNDER/EDITORIAL DIRECTOR

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

Tom Snellgrove tom@parentingspecialneeds.org DESIGN DIRECTOR

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@paraentingspecialneeds.org Robin Newman

Douglas Haddad

Christina Bartlett

LCSW, PC Clinical Social worker, Adjunct Professor

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

Registered Dietitian

Chynna Tanara Laird Author, Psychology student, Freelance writer

Nadine Timpanaro Schools, Camps & Residences Nadine@parentingspecialneeds.org CIRCULATION & PR

Bob Jaszcz bob@parentingspecialneeds.org WEBMASTER

Sean Thompson sean@parentingspecialneeds.org

Cynthia Falardeau Executive Director of the Education Foundation of IRC

Kami Evans

Ernst VanBergeijk

Barbara Sher

Certiﬁed Special Needs Children’s Yoga Instructor

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

Pediatric Occupational Therapist & Author

Sarah Cook

Sarah Choueiry

Photographer Cookwire photography

Speech & Language Pathologist

“The best way to ﬁnd yourself is to lose yourself in the service of others”. ~ Mahatma Gandhi

Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www. parentingspecialneeds.org Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reﬂect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2013 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PUBLISHED BY: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968

4EL s &AX PARENTING SPECIAL NEEDS.ORG

MAR/APR 2013

www.parentingspecialneeds.org

editorial director from the heart

â&#x20AC;&#x153;Some Days You Gotta Danceâ&#x20AC;?... I was driving the other day and heard a song on the radio called â&#x20AC;&#x153;Some Days You Gotta Danceâ&#x20AC;?. While the title by itself struck a â&#x20AC;&#x153;chordâ&#x20AC;? (pun intended) in me, I also started thinking about how that simple title, coupled with the meaning in each of our â&#x20AC;&#x153;specialâ&#x20AC;? lives, made me realize the impact of music in each of our lives. It has been said since the dawn of time that MAN CAN LIVE WITHOUT ANYTHING EXCEPT MUSIC .OW WE CAN GET literal and argue that there are other things man canâ&#x20AC;&#x2122;t live without (God, food, water, etc...), but, the simple fact is that music is integral to the human condition. I know how my daughters (one special and one typical) react to music; how they sing along...smile, dance, calm down, or get energized. So, this issue has some incredible articles on music and how it has impacted several â&#x20AC;&#x153;specialâ&#x20AC;? lives.

Since this time of year is a good time to start planning ahead for summer, we have some great advice and tips on summer camps and for making plans for a great summer. Speaking of planning, there is a great article on potty training.....now thatâ&#x20AC;&#x2122;s something we all need to plan ahead for so that we can have the best possible outcome.

Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org

Coming Next Issue Family Fun: Travel, Mobility & Recreation

MAR/APR 2013

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about our cover...

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

t n a W W in I t ? it!

Mallory Reynolds, 7, with Donny Osmond. She is the second youngest of 8 children and has been diagnosed with Periventular Nodular Heterotopia, ADHD, Turner Syndrome, Aspergers, OCD, SAD, and Elhers Danlos Syndrome. When she grows up she wants to be a princess. In fact, she even won a trip to Disneyland. Her favorite princess is Belle.

Look for this symbol on pages then enter to WIN at PSN Contests

Jungle Rangers from Ableplay

W in it!

Play CD by Fun and Function

Read more about Mallory on page 40. Tactile Sensory Ball by Fun and Function

Cover photo courtesy of Chritstine Reynolds

Stay in touch in order to W in! 8

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LIKE US ON FACEBOOK Visit facebook.com/parenting.special.needs.magazine to get advice, talk with other parents and become eligible for giveaways.

Q &A

ASK SPECIAL PARENTS

SPECIAL FANS

Has anyone had any experience with conductive education? What are/ were your experiences? Give me your opinions? I’m trying to make the rright decision for myself and my family. I was llooking into the conductive education center o of Orlando. Has anyone had experience with tthis place or heard anything about it? Any aadvice? Thanks in advance-Heidi Patin. Many great ideas were shared like: M

Summer Forrest Larsen shared this: We do S iit in Denver, and we have only been doing it ffor 2 months, but I CLEARLY see a difference already. We absolutely love it and would a HIGHLY recommend it! It really focuses on H tthe abilities of children instead of putting tthem in a classroom to focus on mental sskills. Conductive education works the WHOLE physical being! SO WORTH IT! W

Wonderful “WACKY” W W Words or Phrases

John Patrick McGlone has a meeting with a fellow Eagle Scout, Mr. Rick Scott on Developmental Disabilities Awareness Day! Submitted by

Lisa McGlone Post pics to our wall... and you just may be selected as our SPECIAL FAN! on our Fan page, just go to where it says “share” then go to photo upload.

“Hurchy” = hurt + itchy SSubmitted by Amanda Finch Broadfoot

Join oin Us on Fa Fac Facebook! Face ace ceb ebo book! boo oo ! MAR/APR 2013

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Enter Parenting Special Needs Magazine

“Mom & Me” Cover Contest for our May/June Issue One Lucky Winner will appear on the Cover of our May/June 2013 Issue!

Didyou KNOW

id you know that the National Information Center

for Children and Youth with Disabilities (NICHCY) has a written guide to help ﬁnd and keep a job for those involved in helping students

agging Prize: br gifts lus rights p t $150. valued a ril 15th 5- Ap March 1 r Summe Theme:

with cognitive disabilities?

Enter E t contest t tb by uploading a photo today on our facebook page or sending image to: submit@parentingspecialneeds.org Remember to include name and age of child and put “Mom & Me” in email subject line.

Find more out about this publication at http://nichcy.org/wp-content/uploads/docs/ta3.pdf

Source: Respect Ability Law Center Tip: magazine cover is vertical (portrait)in layout. Please don’t compress images. Must have and include permission from photographer for copyrighted images.

Photo: www.moving-forward.org

news psn community

Sharing

updates

“30 Under 30 Campaign: Young Professionals on the Spectrum”

Bioness gets FDA Clearance for Children who have Foot Drop

Help

with walking www. bioness.com

Bioness Inc. announced it has received 510(k) clearance from the U.S. Food and Drug Administration (FDA) to market its L300® Foot Drop System to pediatric patients and their caregivers. This is the ﬁrst FDA cleared neurostimulation device of this kind for use with children. The L300 is a neuromodulation technology designed to treat foot drop, a condition which causes walking difﬁculty in adults and pediatrics with upper motor neuron pathologies. Worn on the leg, the L300 has three main parts: a small wireless sensor in the shoe, a sport brace-like leg cuff worn just below the knee and a hand-held remote control. The three components use wireless communication to “talk” to each other. L300 Foot Drop System Can Help Children with Cerebral Palsy, Stroke or Traumatic Brain Injury Regain Mobility and Lead More Independent Lives.

The Campaign will persist throughout the 2013 Calendar year, with 2-3 individuals being highlighted each month. These individuals may be college students, scientists, artists, musicians, or possess a variety of other skills and talents that have allowed them to achieve success and reach their goals. The mission of the Campaign is two- fold: to increase awareness about Autism Spectrum Disorders- speciﬁcally concerning young adults on the spectrum and to provide a core group of successful role models for our young learners who are on the autism spectrum. Visit: http://www.aba4unj.com/ ABA4U/Blog.html

For more information can contact Bioness at 800-211-9136, Option 2.

Ready to Roll: Convaid’s trusted EZ Rider pediatric wheelchair has been recently enhanced to help special needs children and families live fuller richer lives. The newly upgraded wheelchair is set to hit the market this March. Its 10-degree ﬁxed seat angle allows children with limited upper body control to sit upright and see straight ahead. The EZ Rider combines improved seating, support and cushioning with durability and aesthetic ﬂair. New foot-operated wheel locks make it easier for parents and caregivers to watch his or her child while safely locking or unlocking the wheels. For more information on Convaid http://www.convaid.com/ or call 1-888-CONVAID . MAR/APR 2013

New & Improved EZ Rider wheelchair

PARENTING SPECIAL NEEDS.ORG

check it out! special products

Products you can use and win! W in it!

Jungle Rangers

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

hat can parents do to help their child with special needs thrive academically? there are two areas that are cornerstones for learning: improving focus and memory. Some products are helping kids develop both. one such innovation has been created by an attention research psychologist. the developers believe that today kids are struggling, not because they aren’t smart or capable, but because there are more distractions than ever. Without getting into the neurotechnology, all parents need to know is that it helps children build attention, overcome distractions and improve memory. all kids need to know is that it’s fun and has all the excitement of a video game. the game is called Jungle Rangers and the company is appropriately named Focus education.

Do you have a product you would like to share with our readers? Please send us an email describing your product. We are happy to review and test your product.

What’s “APP”ening? Helpful Apps One Minute Reader by Read Naturally, Inc.

The One Minute Reader app is for developing and struggling readers. It is based on the Read Naturally program and strategy used by thousands of schools for 20 years. The program has several steps that are research based and are important in fluency development. The steps include non-fiction stories, a cold timing to establish a baseline for improvement, and reading along with a fluent reader. Price: from free to $2.99 and up(reading level based).

submit@ parentingspecialneeds.org Please make sure to put Product Review in email subject line.

Parenting SPecial needS.org

MAR/APR 2013

Twinkle Tunes Piano Book

et’s turn from games to another area of entertainment options that can tone kids’ brains-music. research continues to document that connecting children to music helps: • Increase the ability to hear speech in noise •Aids in communication, reading and language •Improves verbal memory and word recall

additional research shows that music lessons may lead to positive changes in the brain that persist years after the lessons stop. articles promoting the benefits of musical training mention dyslexia, down syndrome and attention-deficit. Since much of the research involves musical training, a company that offers lots of options for early learners is Schoenhut. From pianos to guitars they specialize in starting kids off right. For example, the twinkle tunes Piano Book combines book with piano and offers only 8 keys for a perfect introduction to music. Kids with special needs often need a little academic intervention. improving focus and memory is a great way to start. Reviewed by Ellen Metrick, Director of Industry Relations & Partnerships, National Lekotek Center, emetrick@lekotek.org For information on other toys and products for children with special needs, visit our website www.ableplay.org. AblePlay is a website sponsored by the National Lekotek Center, an authority on play and children with special needs at www.lekotek.org. Follow us on Facebook.

for Children with Special Needs Inclusive Smarty Pants by Inclusive Technology Ltd. In Inclusive Smarty Pants, your child gets to choose one of four characters then gets to choose which emotion he wants them to act out. From happy and sad to crazy or embarrassed, your child controls how the character responds. It’s a great way to begin talking about emotions and feelings. It’s ideal for children with low vision. There are even ways a child with no vision can participate. Price: $2.99

check it out! special products Mobo Cruisers (3 styles) Riding a bike builds skills, good health and self-confidence -- and what fun it is! Low muscle tone or poor balance is not a barrier with our bikes which help children succeed on wheels. The Mobo® Mini three-wheeled cruiser has a unique steering system that helps develop handeye coordination and muscle strength. The sturdy comfortable seat and chainless chassis protects small fingers from boo-boos. The adjustable frame grows with the child, from ages 2.5-5. The Mobo® Mobito has ergonomic back support with six angle settings and adjustable frame designed to fit and grow with kids ages 4-10. The emergency brake feature and rear-wheel automatic alignment allows for quick turns and stylish cruising. The Mobo® Triton for ages 7 to teens, is known for ultramaneuverability and “way cool” design. A simple steering mechanism, caliper handbrakes, ergonomic seating and low-to-theground chassis makes this perfect for riding with friends or working out. Starting at $219 www.funandfunction.com

Tactile Sensory Ball Playing ball is a great sensory experience -- especially when the surface is covered with hundreds of small tactile bumps! The added stimulation brings a new level to exercise and ball activities. Work out on the ball to strengthen core muscles, and improve body awareness, balance and attention. Roll the ball over the child for a deep pressure tactile massage. 28” diameter. Requires Pump (sold separately). Price: $29.99 www.funandfunction.com

W in it!

Enter to WIN at PSN Contests

W in it!

Play CD Through 22 songs, Play CD focuses on auditory skills needed to enhance listening, follow directions and process information. The first 30 minutes teaches awareness of loud, soft, fast, slow, and the presence or absence of sound -- all characteristics of good communication. The second half asks children to listen to, interpret, and respond to instrument sounds and music clips. Children can do the listening exercises either sitting or standing. Age 2+. Price: $14.99

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MAR/APR 2013

www.funandfunction.com

June 7-9, 2013 The Hilton Orlando

6001 Destination Pkwy c Orlando, FL ccc

“Florida’s Premier Event for People with Disabilities and Their Families!” ccc

No Registration Fee for Families! 160 plus Breakout Sessions! c 100 plus Exhibitors! Employment Expo! c Adaptive Recreation Activities! Information, Training, Networking and Fun! ccc

parentingspecialneeds.org

ÂŠ 2011 Fox Broadcasting Company

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

no limits! Support Different-Ability Awareness

Michele Gianetti

Real Rea ealM

Shares about believing in her daughter.

share Life’s lessons

ichele Gianetti contributed to this issue’s “Real Moms Share” section of the magazine. We asked her to give us an insight into herself, as well as into her life raising her daughter, Elizabeth who has dyspraxia and Sensory Processing Disorder (SPD). We asked her a series of questions; some serious and some “just for fun”. Here is what she said.... PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family. MICHELE GIANETTI: We are a family of 5 people, who are very close to each other. We spend a lot of time together as a family and love each other very much. My husband and I have stressed the value of love and kindness to each other, to enjoy all the little things in life… not possessions. Elizabeth is our middle child and has both dyspraxia and SPD. She was diagnosed at 2 years of age. Life with Elizabeth has been a All photos courtesy Michele Gianetti

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Parenting SPecial needS.org

PSN: Tell us a little bit more about Elizabeth’s multiple diagonses (explain briefly) and her personality etc. MG: Elizabeth has dyspraxia and SPD. Dyspraxia is a disorder that involves motor planning. Motor planning is what we need to perform tasks. Dyspraxia can affect fine motor skills (coloring, writing, using scissors), gross motor skills (running, riding a bike) and oral motor skills (making sounds and then words). In Elizabeth’s case, it affects all areas…her dyspraxia is global. Dyspraxia also can affect a person’s thinking, they can have difficulty planning a series of movements to do a task and can have difficulty executing those movements. Dyspraxia is very complex and can show itself differently in each person. The second disorder she has is Sensory Processing Disorder, or SPD. This is a disorder that affects the way the nervous system takes in sensory information and turns it into the appropriate behavioral response. In Elizabeth’s case, all sensations felt wrong or offensive to her. She was always in a state of anxiety and cried so very much for the first 2 years of her life. SPD also has other forms and, again, each child can show the disorder differently. We began therapy for Elizabeth at the age of 2. The therapy was so difficult and she cried throughout them all at first. We began the brushing protocol for Elizabeth as well as adding the joint compressions. This was a big turning point for us. Her system was calmed by the protocol and allowed sensory information, that otherwise was offensive, to be processed. We started making gains and noticed she was calmer and happier. The path for working with her dyspraxia involved teaching all tasks; step by step, over and over again until she had learned the steps. All skills have been taught to Elizabeth. The process is long and it is a lot of work, but progress and successes can be made. My daughter has made wonderful, amazing gains in life through therapy and the follow-up therapies at home. PSN: What moment or event happened that motivated you to take action with regards to writing your book? MG: As Elizabeth got older, we were advocating for her more and more, and as we did, so many of those people (teachers etc…) who had just met her would ask about her history. As I would explain it to them, they would look at her and remark that they could not believe what we were saying because they were seeing her

Parenting SPecial needS.org

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now. So then I had a thought; that telling our story would be such a wonderful way to let everyone who would be working with Elizabeth in the future to know her and to “get” her right away. Elizabeth, back then, said to me many, many times (3 years ago) “ Nobody understands me, Mom” and I thought, “with this book, everyone will understand you”. It is a tribute to not only Elizabeth, but to her story, struggles and journey. It is my hope that by telling our story we can reach others who may be alone, or on their own similar journey, and to let them know there is HOPE and that you can make a difference in your child’ s life. Raising awareness for the disorders through the book and our story will help others. PSN: How did you decide on the title of your book? MG: The title of the book comes from the words that I have said to Elizabeth every day of her life, and whispered to her before she fell asleep every night since she was one. Long before we even knew what she had, I just knew there was so much more in this child and I wanted her to know how I felt about her. PSN: You share about the values your family has as a result of Elizabeth, please explain. MG: Our family has been, as I mentioned before, one that values the little things in life. Things like a nice walk, a family football game, or playing in the snow. We have raised our children to love those things the very moment you get to be together. But, what Elizabeth has added to our values is that we all rejoice in the little successes of life. We can be so happy to see her do something that others would take for granted and it’s those little successes that can mean so much.

PSN: Your oldest daughter, Emily, is the perfect sister for Elizabeth. Can you share about the important role she has played? MG: Emily is an amazing, loving big sister. She has always wanted Elizabeth to be her friend and to do things with her that other friends could do with their sisters. Unfortunately, with Elizabeth’s disorders, this was not really possible until years into therapy. Through it all, though, Emily has been there for her sister to rejoice in her successes and to help pick her up from a defeat. Emily could reach her when no one else could. Emily loves her sister and Elizabeth loves and adores Emily. And now they are friends…they talk, share things, and they go places together. Emily waited a long while for this friend. We are constantly thankful for this beautiful “Elizabeth- whisperer”. Do you have a proud moment you would like to share about? MG: I think if I had to think of a proud moment it is when she brought home a great report card. She worked hard for it and for me to see the joy and happiness in her eyes, well, SHE WAS PROUD OF HERSELF. It is times like that when I know she gets how great she is...those are the moments I am proud of. She is doing it for herself.

Nathasha and her sister Nicoletta

PSN: What have been some of your biggest obstacles/challenges raising your child? MG: I think some of the biggest challenges we faced were in trying to get people to understand her and understand her disorders. With dyspraxia, there are outward signs, but sometimes getting people to understand how the thinking part of dyspraxia can affect her each and every day, well, that was hard. To be her advocate is a job that takes many twists and turns. But, I think getting someone who will be working with her, to truly understand her, is the first and biggest step. Then, instead of having to worry, you can work together and achieve gains. PSN: I have to admit, I was a little jealous about the Blessing of a great team you were able to assemble to help guide you in raising your daughter. What a gift to continue to have a confidante and consult like your “Mary MA/CCC/SLP”. Can you share only one tip, or piece of advice, that you learned from Mary? MG: I said it in the book (and I actually just said it to Mary herself just the other day)…she is a gift to us. I cannot say it enough or thank her enough for the guidance and care. I have learned so much from her in these years, but something she said to me many years ago still stands out to me: More is not always better. I was, at the time, trying to fit in as much as possible into Elizabeth’s days in order to help her catch up. I was noticing stress in Elizabeth and could not figure out why. It was a freeing comment and one I fall back on even today. All things happen for a reason. And, when they do happen, to know that I do not have to “do it all right now” is a gift. PSN: You mention in the book that through raising Elizabeth, you were left with your own battle scars? Can you explain what you mean? MG: Wow, good question. I know that when I look at a picture of myself before I had Elizabeth, I almost do not recognize the face of MAR/APR 2013

Parenting SPecial needS.org

that person. We will never be those carefree people again. We have lived, and done, so much since Elizabeth arrived. I think being with a child in public who has Elizabeth’s disorders now is so stressful and anxiety provoking. I have read so many posts on my book’s facebook page from other mothers who hate the stares and comments. This is in a time when her disorders are more recognized. Imagine 13-14 years ago, to be in public with a child who was crying or upset all the time! People just did not know about these things, so the looks, stares and comments do take a toll. Going into a public place went from being a quick trip to a severely nerve wracking experience. My battle scars stem from those times when I could not control the place, the lights or the long lines and all I wanted to do is get out. It was tough and it does stay with you.

In this day and age, people can take the idea from the therapist and look up more information on-line. But, therapists make wonderful friends.

PSN: You also share about many academic ideas, therapies and strategies you have tried. Can you share about one thing you’ve learned that has made a big difference in your life and that you would like to share with other parents?

PSN: Anything else you would like to share?

To set up a daily communication with the teacher, or school personnel, your child will be with each day. Arrange for them to send a paper home each day. Let them know that nothing is too small for them to tell you, no success is too small for you to know about. Keep the communication flowing....then everyone will be on the same page to help your child succeed to the best of their ability. PSN: What advice would you give to new parents raising a child with similar special needs? MG: To read as much as you can! Reach out to a support group just to have a place to share feelings and to find out how the disorder(s) affect your child. Then you can find out how best to treat them and how to make adaptations in your home and life to help them succeed. Once you know this, you can advocate so much better for your child and can tell others all the information they need to know about your child. This is assuming of course, that your child has been seen by their pediatrician or had another professionals evaluate them to actually get the diagnosis. PSN: Are there any special resources you have found that have helped you on your journey (local or web)? I think when we were initially on our journey not much was out there to read or use as resources, so, I chose to talk (and talk) to our therapists. I found that they can be a wonderful wealth of information. I can offer to those reading this to talk to and use ideas the therapists offer.

Parenting SPecial needS.org

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PSN: In conclusion, you compare raising a special needs child to playing a game of chess, would you care to elaborate? MG: As it is in chess, if you take your hands off the piece you have to count that as your move. So, before you “make a move”, you have to think of what could happen, or NOT happen, if you pick one move (decision) over another move. What are you going to do if what you think happens, does happen, or what to do if what you think will happen doesn’t. I feel that each move we make has to be the next best one for Elizabeth. We have to weigh each move and outcome and be ready for what takes place.

MG: I have to offer out, at this point, some of the resources I have found that can be so helpful to those on their own journey. For information about dyspraxia and some great links to get support, please visit www. dyspraxiausa.org. The founder of dyspraxia usa is Warren Fried, and he is extremely nice and always willing to talk and help. To see the list of signs and symptoms of SPD, please go to www.spdfoundation.net. Dr. Lucy Miller is affiliated with this foundation and well known for her work with this disorder. She was kind enough to write the introduction to my book. Additionally, www.talktools. com is a great site for help with oral-motor needs. The site offers many of the tools we used to help Elizabeth learn to talk. For information about The Listening Program or TLP, please go to www.advancedbraintechnologies.com. This is the music we have been using to help with Elizabeth’s auditory processing disorder, as well as comprehension and attention. It is amazing all the benefits this music brings. I also wanted to offer out my website, www. michelegianetti.com to those who wish to read my blog. I would be happy to share my email: ibelieveinyoubook@ hotmail.com PSN: Thank you Michele for sharing with us about your journey and the lessons's you've learned raising Elizabeth.w Michele Gianetti, R.N. is the author of “I Believe In You” As the veil of denial is slowly lifted, Michele faces up to the fact that something is terribly wrong with her beautiful baby Elizabeth. Join her in I Believe In You as she travels a road unfamiliar to most parents, into Elizabeth’s world, the world of dyspraxia and sensory processing disorder, and meet the wonderful group of individuals, both therapists and friends who help her on her journey. Her devotion to Elizabeth proves there are some things that withstand even the greatest challenged: a mother’s love and the words “I believe in you.”

Just for

fun about Michele

What do you do to find time for you? I get up early to work out, I read and I also try to make sure our children hit the sheets at a decent time. That way, there is a bit of built in downtime each night. Mommy timeout: Dream vacation? Dream vacation would be a guaranteed safe flight to and from somewhere warm! A wonderful genie who would volunteer to be here with my children and do everything the exact way they are used to so John and I can head off for a week. Favorite treat? Chocolate. Your one makeup essential? It would have to be cover stick and bare escentuals foundation powder…it stays on all day. Do you drink Coffee or Tea? Yes, I love, love, love coffee!

GREAT RESOURCE

Serving the Special Needs Community /OCT 2011 HOOL SEPT BACK TO SC

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Are you a dog or cat person? Can I say neither? Favorite wacky word or phrase from Elizabeth?“ Hello, Woman”. She calls me this and I love it. Each day after school I am greeted with this phrase

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real life advice

Sleep Away Camp: Is your child ready?

by Robin Newman, LCSW

When is a child with special needs ready for sleep away camp?

Advice

I don’t think that they are ever ready if it’s up to them. We need to make them ready for our sake as well as for theirs. We began the “steady buildup” , as I called it, by working on the children during the school year with rewards and pointing out that they wouldn’t have to go to bed at 8pm every night, but, at 9 or 10 pm when they were at camp. Of course, we contacted the camp to see what they had planned on a daily basis. We began the work at age 13. At first, they were frightened because it’s a change of scheduling but they began to see that it could be a fun experience for the both of them. We made the decision that we (the parents) needed it as much as they did. So, that being said we started out very slowly. First, we screened all the community camps in the area. The Jewish Community Center seemed to have very comprehensive programs and being Jewish was not a requirement! So we made tiny, baby steps. Mike is much lower functioning than Samantha is. He is developmentally at a five year old level. So, we began with one week of sleep away camp for the first summer. The next year we did two weeks, and the third year we sent them for a month. Now, they go for the entire summer. Another suggestion for parents to consider is the AHRC. They have adult and children sleep away camps. God Bless, Robin Newman LCSW PC

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MAR/APR 2013

We need to make them ready for our sake as well as for theirs.

Have a question for “Relationship Rescue”.

Send an email to

advice@parentingspecialneeds.org Please make sure to put “Ask Robin” in email subject line.

When kids cook, they get a taste for teamwork.

Start your week off right: Make Monday family night! ÂŠ The Monday Campaigns, Inc.

s s e c c e

Pottyy

by Laura Casper and Meme Hieneman

t is not uncommon for children with special needs to have difficulty with toilet training. This may be because they are not able to recognize bodily sensations and link them to using the toilet or because they require more systematic teaching methods to be successful. Parents are often unsure of when and how to start toilet training; this uncertainty leads to starting and stopping and ongoing frustration. This article provides tips for determining readiness and successful toilet training.

Is your child ready?

Children show both physical and behavioral signs of readiness for toilet training. Your physician should always be consulted to assist in this determination, but your child may be ready if he or she can: Walk or run and sit upright without your assistance Stay dry and clean for extended periods (e.g., 45 minutes) Release a full bladder and have routine bowel movements Demonstrate awareness of bodily functions (e.g., grunting, squatting, grimacing) Stop or change activities when wetting or soiling in the diaper Imitate other people and demonstrate independence (by refusing help)

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MAR/APR 2013

Come to you or hide when he or she has a wet or soiled diaper Respond positively to praise and rewards

Are you ready?

Before you begin toilet training, it is important to make sure you can devote the necessary time and energy and make it a priority in your routine. If possible set aside a long weekend or several days when you know you can focus on toilet training. Stock up on food, supplies and clear your calendar so you can remain home as much as possible. Be prepared for accidents which commonly occur when children are learning which will require more laundry and clean up time. Engage other family members to help and arrange for them to entertain siblings and run errands. Being prepared and having support can give you the encouragement you need to keep at it and stay positive with your child.

If so, let’s go….

Once you have determined that you and your child are good to go, there are steps that make toilet training more successful.

1. Get Prepared Take it to the bathroom! Start changing your child’s diaper in the bathroom. Flush bowel movements down the toilet and encourage your child to watch. Talk about using the toilet. Read books, watch videos, and - if you are comfortable - let your child watch family members use the toilet. While preparing your child, you can also get equipment and supplies together. These include a potty seat, training underwear and rubber pants, activities and items (e.g., toys, treats) to reward success, a sticker chart if it will be used, and a timer to keep on schedule.

2. Keep a Potty Record Collecting ‘data’ is very helpful both when deciding when to start toilet training and tracking success. Start by doing “pants checks”. Set your timer for every 15-20 minutes and record whether your child is dry, clean, wet or soiled. This information will help you know how often you will need to take them to the toilet when you start training. Once you begin toilet training, be sure to continue recording. 3. Set the Stage for Success Put the diapers away and introduce underwear during the day so your child will be able to use the potty quickly and feel wetness if accidents occur. If appropriate, increase fluids to give more chances for success. Plan your schedule for taking your child to the bathroom based on your potty record, planning trips frequently enough to avoid accidents.

4. Take your child to the Bathroom On schedule or if your child shows signs (e.g., facial expressions, stopping activities) he or she needs to use the toilet, bring your child to the bathroom and have him or her sit on the potty for 2-3 minutes. You may have to interrupt activities. Say “First go to potty, then play with ___ again.” Avoid power struggles by telling (not asking) your child to go, but also trying to make it fun. For example, you might pretend to be different animals or form a conga line to the bathroom. 5. Reward Successful Toileting Continue your pants checks every 15-20 minutes. Praise dry and clean pants. When you take your child to the bathroom, praise him or her for walking to the potty and sitting. If your child urinates or has a bowel movement in the potty, have a party! Cheer, call family members, do a little “potty dance”, and/or provide stickers or other rewards. Don’t be afraid or embarrassed to be silly – even in front of other people. Accidents are to be expected when toilet training. If your child is wet or soiled, just tell him or her so without scolding or anger and clean it up. If more accidents start occurring, increase your praise for successes and how often you bring them to the toilet.

6. Expand Your Horizons Once your child begins to experience success at home, focus on toilet training in other places. Toileting in public can often be difficult. Being prepared will help avoid frustration and embarrassment. Keep extra clothes, plastic bags for wet/dirty clothes, and rewards in your car or a bag you can carry with you. Work extra time in your schedule to use the potty before leaving the house, as soon as you get somewhere, and before you leave. To increase your child’s comfort, you might bring a portable toilet seat or preferred activities such as books or music to relax your child.

7. Encourage Independence The ultimate goal is for your child to use the potty without reminders. If your child says he or she needs to use the toilet or walks in that direction without you telling him or her, provide enthusiastic encouragement, even if your child has an accident while on the way to the toilet. As time goes by, decrease your assistance and rewards, letting the natural consequences take over. This is when sticker charts or long-term rewards (e.g., if you stay dry for 5 days, we will ____) come in handy. You will also be able to extend the time between pants checks and trips to the bathroom as successes build.

Remember that consistency is essential to toilet training success. Once your child begins wearing underwear and using the toilet, you want to stay the course. Inconsistency can cause setbacks. For that reason, you will want to get everyone who cares for your child on board. Also, keep your eye on the ball. Initially, the goal will be simply to get your child to use the potty. You probably want to focus on other skills such as dressing and washing hands at different times or after tackling toilet training. Each child is different and progresses at different rates. Some children respond almost immediately. Others can take months or even years to use the toilet independently or may require a schedule and support long-term to be successful. Don’t get discouraged if successful toileting doesn’t happen immediately or your child needs continued support. Toilet training may take some time and energy, but by making it fun and focusing on success it can be a rewarding experience for both you and your child. w

MAR/APR 2013

Parenting SPecial needS.org

real life advice

Searching for a a suitable summer camp

My child has special needs and I would like for him to go to camp this summer. Where do I begin to look for a suitable place?

Ask the NURSE

Answer:

There are camps designed specifically for children with special needs. These camps take children with issues ranging from developmental differences, like autism or intellectual disabilities, to medical issues like diabetes and cancer and to those who are technology dependent like children on ventilators. These types of camps may be a good option for your child. These camps have environments which are geared towards a child with special needs. They also offer the opportunity to socialize with peers who have the same disability. In addition, it is an opportunity for networking with other families and the fact that all activities will be appropriate for the type of disability for your child is always a plus.

Special Camps

You can search the web for “special needs camps” or “camps for children with special needs”

socialize with

Listed here are some examples of camps for special needs children. • ADHD: Search ADHD Summer Camp Directory • Cancer: Search Camps for Children With Cancer • Celiac Disease: Search Gluten-Free Summer Camps • Congenital Heart Disease: Search Camp Taylor • Diabetes: Search Camps for Children With Diabetes • Medical/Serious Illness: Search Hole in the Wall Camps • Tourette Syndrome: Search Tourette Syndrome Camp Association DISCLAIMER: The contents of the Ask the Nurse column (“Column”) such as text, medical information, graphics, images and any and all other material contained in the column (“Content”) are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your (or your child’s) physician or other qualified health provider with any questions you may have regarding a medical condition. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY IN SEEKING CARE BECAUSE OF SOMETHING YOU (OR YOUR CHILD) HAVE READ IN ANY MEDICAL LITERATURE!

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MAR/APR 2013

offer the oportunity to peers who have the same disability.

Have a question for “Ask the Nurse”.

Send an email to

advice@parentingspecialneeds.org Please make sure to put “Ask the Nurse” in email subject line.

Mommyâ&#x20AC;&#x2122;s Timeout : Take a time out and use V isualization Meditation to relax. Picture yourself here amongst the Canadian Rocky Mountains. Feel the tranquility. Take a couple of deep breaths and begin to let go of any stress. Moraine Lake is a glacially-fed lake in Banff National Park, 8.7 miles outside the Village of Lake Louise, Alberta, Canada. It is situated in the Valley of the Ten Peak. Photo by ~Isruma

breathing space your life

your life help

Sharing

“Food Autopsy”

realfinds

Help Plan Meals and Save Money

Food on the Table is an meal planning service designed to help families eat better and save money. This free app does diet specific menu plans with family-friendly, healthy recipes utilizing the sales at your local stores. You select the stores where you shop, your food preferences (gluten free, vegetarian), the recipes you want for the week, and then it gives you your organized shopping list. You can print just your grocery list, just the recipes, or both. You can also email the grocery list to yourself or send it to your iPhone!

= A typical spinach wrap is like eating 3 slices of white bread dyed green! Book Price $19.99

What To Eat! In EAT TO LOSE, EAT TO WIN, Rachel Beller (nutritionist/The Biggest Loser T.V. show) dishes out realistic, easy-to-follow plans that are based on scientific research, not fads or myths and delivered in a conversational tone. “My book is a fun yet realistic starter kit that puts skinny solutions into shopping carts and onto plates,” says Beller. “But that’s just a start. Yes, I can make you thinner so you look better in a 3-way mirror. That’s easy! My real goal is to make you both thin and healthy — for life.”

Beller’s signature “Food Autopsy™” Alerts: Popular dishes go under the knife to expose the real nutrients (or lack thereof ). For example, a typical spinach roll contains the carb equivalent of approximately 3 slices of white bread dyed green. While most diet books focus on what people can’t eat, Photo: www.foodonthetable.com locate it EAT TO LOSE, EAT TO WIN emphasizes what people Available in should eat and even how to buy it. Apple Available at Courtesy of William Morrow, an imprint of HarperCollins and Android www.ponilox.com $10.00

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MAR/APR 2013

Summer Preparation: 8 Steps

organized your life

by Joan Celebi, Ed.M., CLC

f you’re like most parents of children with special needs, summer arrangements for your children must be made well in advance.

This year, don’t wait until the last minute to read those materials, make those phone calls, and fill out those forms. Eliminate the stress of looming deadlines by scheduling some uninterrupted, focused time to take care of your summer plans. Take a look at your calendar and find a block of time - perhaps an hour or more - this week. Reserve that time for summer planning. Here are some things you may want to consider as you put your summer plans in place:

Therapy - What therapies will your child need to continue over the summer? Which ones can be put on hold? What are the therapists’ summer schedules? Summer school/classes/lessons - What forms need to be filled out? What accommodations can be made, if necessary?

©ALX photoxpress.com

Sitters - Will you need time with the sitter to go over summertime routines and how-to’s? What are your expectations for the time your sitter will spend with your children this summer?

Daycare - Do you need to fill out any special permission forms? Will the care providers need any special warm-weather-related instructions?

Camps - Are there medical records you’ll need to submit with the camp application? Will you need to meet with the camp director and/or staff to discuss your child’s needs? Vacation - If you’re traveling for vacation this summer, which hotels are the most family friendly? Which activities and destinations have accommodations or special programs for children with special needs? Respite Care - Do you need to take a break? There are a growing number of excellent respite care programs that you may want to investigate. Remember to “care for the caregiver” -- replenish your own inner reserves with some time off to relax, recharge, and renew. Downtime - block out dates and times on the summer calendar NOW for downtime. I know, it seems paradoxical to have to schedule downtime! But downtime is essential to the well being of everyone in the family. Make it a priority by providing regular time to just “be.” You’re going to feel great to having all the summer preparations done in advance! w Joan Celebi is the founder of SpecialNeedsParentCoach.com, and the author of Overwhelmed No More! The Complete System for Balanced Living for Parents of Children with Special Needs. You can sign up for Joan’s FREE Overwhelmed No More Newsletter, Lunchtime Teleseminars, and more! Visit www. SpecialNeedsParentCoach.com/ and click on “Free Resources.” MAR/APR 2013

Parenting SPecial needS.org

It’s Not Rocket Science The Art of Planning Good Meetings between Home and School Teams by Cynthia Carr Falardeau

ou may think I am nuts, but, it’s true. Parents, me included, make it harder than it has to be. I am talking about home and school team meetings. We think think that it, like science, is complicated. In reality it is really an art. As much as parents want to complain about the school and the personnel involved, they have the power to build strong relationships to advance their child’s education. Like an artist, there is not a right or wrong way. You can craft your own approach. Quite simply – it’s not rocket science. It’s about getting people to work together. The parent is the creator of this effort. Now this may strike a chord with some who may respond, “Ridiculous!” The truth is that advocating for your child makes good business sense. Even if you are not a business person there is plenty of research that demonstrates the most successful people in the world do one thing well – they get others to come together. I know all too well that whether or not you have graduated from a Dale Carnegie seminar (“How to Win Friends & Influence People” or “Stepup to Leadership”) it’s a different game when your

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child is involved. As someone whose previous career was in business, my ability to be persuasive and build interpersonal relationships was severely hindered when it related to our son. Remaining calm and collected was almost impossible. All I felt like doing was unloading my heart – yelling and screaming. Bottom line – unleashing your emotions accomplishes nothing for the long haul. These statements are based on my experiences during the past 7 years as a parent. I set up meetings for the obvious reasons: to update an Individualized Education Plan (IEP), review summer school placement or to simply touch base. So here is the truth. You, the parent, have work to do to prepare before meetings that involve the entire team. To build successful collaborative partnerships you have to invest some time and park your emotions. Yes, it is a full-time job, but it’s your responsibility. Only you can make the change to “win friends and influence people” for the benefit of your child’s future.

Here are my tried and true tips for preparing for successful meetings: (1).get organized: read the reports, know the ieP goals,

and be familiar with what goes on during your child’s school day. You need to know what you are talking about.

(2).

create open lines of communication: Find out what are the preferred means of staying in touch with the team members. Some of my son’s teachers prefer email, others like a log, and some just want to talk by phone. there are 6-8 people i stay in touch with and each has a difference preference. You may scoff at this but if it gets me what i want (strong relationships) it’s worth it.

(3).Be Patiently Persistent:

the reality is that these teams of professionals have overloaded responsibilities. as budget cuts have continued, many of them are working two school sites or have been given increased responsibilities with pay cuts. always start the conversation with acknowledging this and thanking them for their time. the majority of folks in this business do it because it is a passion. there will always be the 10% that need to do us all a favor and just retire or leave education. this leads me to my next point.

(4). identify Who You trust:

You don’t have to like everyone on the team. the reality is that you may not be able to get everyone “on your bus” of support. But most will respect your advocacy for your child and will thank you for your interest in advocating for your child. there is a lot of judging that goes on between the two sides – it’s only natural. Pick one or two people you trust and start with them to talk about your concerns and to get help.

(5). outsiders: You can bring whoever you like to school

meetings. However, i do believe that when you bring in legal teams or representatives who ask to record the meeting, you are impacting the dynamic of the meeting. i am not saying that there may be times when this is necessary. the truth is that it puts people on alert and does not create an environment of trust.

(6). do a Self-assessment: You don’t necessarily need to

take part in a Meyers-Briggs personality test to determine your style; however, there are free on-line tools. i think it’s important to know yourself and your preferences. then think about who are the main “players” on the team and think about how they are like or different from you. You may need to “flex” your communication style to connect with them. For example, school administrators are often “data driven.” if you are requesting specific services you

may need to “speak” to them with information that supports your point and aligns with their style.

(7).

the 2 Week rule: if you are requesting a meeting date, it may take them 10 school days to coordinate a date and time that works for all. Be sure to be very clear with how long you think the meeting will last. this will prevent members from leaving early

(8). Have meetings before the meeting: i swear by this

method. talk to the members in advance to get a clear idea of how your child is doing. i always say that i need to know so that i can better support them. it’s a true statement. But it also cultivates a spirit of teamwork. this assures there are no surprises and expedites the full-team meeting process.

(9).

Sending a letter or an agenda in advance of the team meeting; it’s all about setting clear expectations about what you want to cover. it recaps what i have learned from each team member. it also lists my concerns, what i want for my child and my ideas on how i can support the team effort. My final statement is always that i do not like surprises. i always ask them to contact me prior to the meeting if i need to be informed of something not listed on the recap. i explain that the process is hard for me. i also tell them that being “blindsided” with new information will derail my ability to be focused during the meeting. You may say that i should not “show my cards” but it gives them time to prepare and to pull information that i may need to see prior to the meeting. it takes the emotion out of the situation and allows me to advocate with my head and not my heart.

(10).determining

follow up communication dates/ times: this process keeps things rolling. it also fosters trust and collaboration.

(11).celebrating the success of the meeting/relationships:

take time to send a quick email, handwritten note or even a homemade cookie to say thank you. Simple acts of kindness go a long way.

(12).

continue building the relationships after the meetings: Volunteer at your child’s school. it helps the team to see you in a different role and to get to know you. it also allows you to see how your child interacts with other students and school personnel. w MAR/APR 2013

Parenting SPecial needS.org

Harrison Tiny Light

Autism, ADHD, Anxiety Disorder & Silent Seizures Story written by Ardis Fisch Photos by Images Captured by Leanne Liakos www.leanneliakosphotography.com

w w w. t h e t i n y l i g h t . c o m

his Tiny Light has big dreams. Though he is ten years old, Harrison was only recently diagnosed with autism, ADHD, anxiety disorder and silent seizures. While it was tough to hear the news, it provided answers to the many questions he and his family had been struggling with over the past few years. The diagnoses also allowed Harrison to start taking medications which have helped his ability to connect with those around him. Now he greets his mom with hugs and kisses at the door! Like most boys, Harrison loves to play video games, but he also has a lot of other interests. He enjoys taking pictures of flowers and shares these on his own Facebook page. He dreams of being an architect and has been taking architecture classes for years. This talented young man already has plans to get his architecture degree at UBC. He says,“Then afterwards I will apprentice and learn how to do everything. Then I will open my own architecture firm and will build a tower larger than the Shangri-La. My brother, Taylor, will play at the grand opening.” Harrison also volunteers for his mother’s non-profit organization for orphans and has raised $700 for the children’s hospital. To mom, Janet, Tiny Light Harrison is an inspiration in so many ways. She says,“I would tell the family of a child with this diagnosis to see it as a gift. There is so much to be learned from a child with such a mind. Embrace it and encourage your child each day!”

specialfocus Art is the only way to run away without leaving home. ~ Twyla Tharp

Raising a child with

Autism, ADHD, AnxietyDisorder & Silent Seizures

The Sensational Musical Magic of Paul McCartney

Dance & Movement Champion for Mallory

MAR/APR 2013

Parenting SPecial needS.org

The

Sensational Musical Magic of

Paul McCartney by Chynna Laird

hen my oldest daughter, Jaimie, was very young, her sensory sensitivities were so severe that she wasn’t able to function in most social settings. Her tactile system was most affected when a light touch instantly threw her into an inconsolable rage. How torturous it was as a mommy not to be able to comfort my child when she was upset, hurt or scared I couldn’t even give her loving hugs or cuddles. But, music gave me a way to offer that comfort without actually having to touch her, and the musical magic of Paul McCartney was how I figured out music was my lifeline to Jaimie. According to Ryan Judd, Board Certified Music Therapist, “Music therapy began in the 1950’s when musicians started to work with World War II vets in a hospital setting. Doctors and nurses observed the positive physical and emotional effect the music was having on their patients.” One afternoon when I was eight months pregnant with my second daughter, Jordy, Jaimie’s dad, Steve, took her for a walk to give me a bit of a break. Jaimie, who wasn’t even two at the time, was completely dependent on me. I was the only person she let near her or do things for her. I prayed for some sort of miracle that either helped me figure out what was going on with Jaimie or, at the very least, to learn how to help her. That day my prayer was answered. After having a short nap I decided to join Jaimie and Steve outside. She rarely tolerated the action at the park, but, she loved to run and spin in the open field behind our apartment building. The moment I stepped out onto the field I saw Jaimie and Steve. Jaimie was laying down screaming at the top of her lungs while her dad tried getting her up. Jaimie kicked and threw her arms around as her shrill cries filled the air. I ran as fast as my very pregnant body allowed me to until I got to her side. Steve couldn’t pin down what had

Parenting SPecial needS.org

MAR/APR 2013

triggered her meltdown but. at that moment, it didn’t matter: she was too far gone. I didn’t know what to do. There, kneeling beside my sweet girl as she fought some unseen assailant ravaging her body, I cried for her. I did the only thing I could think of to offer comfort; I sang to her. I started by humming classical tunes. When that didn’t work I moved to big band songs my grandfather listened to. Then Andre Bocelli, Michael Buble, classical rock and even The Wiggles. Nothing worked. Finally, I sang ‘Blackbird’ by The Beatles, and something amazing happened. She didn’t stop crying right away but her sobs got quieter and her body relaxed. By the time I got to the end of the song, Jaimie laid there staring up at the sky Photos courtesy chynna laird and creative commons

Music therapy

and was calm enough to allow me to pick her up so we could go home. Ryan Judd feels that “Music can be beneficial in so many ways because it is processed in both the left and right hemispheres of the brain. It is also a multi-sensory activity that incorporates the visual, kinesthetic, auditory and tactile systems.” Right then I knew there was something magical about The Beatles, particularly Paul, that took Jaimie to a safe place and it gave me a tool I could use to bond with her. I used their music to calm her, work her stresses or “sillies” out, and incorporated it into her S.I. therapy later on. They are still her favorite musical influence and she still turns to them when she needs them the most. Judd says, “Everyone can benefit from music therapy and it does not require any musical skill or experience. Music is an integral part of all of us and when that inner music can be nurtured, a person can learn, grow and thrive!”

This past November Paul came to Edmonton for two shows. I was fortunate enough to have obtained tickets for both nights, and took my two oldest girls to see him the second night. The girls created a sign for him and I had a shirt made. We were moved up to the open space behind the third row because the kind Rexall staff saw the girls’ sign, and my shirt, and saw that Jaimie was struggling with the crowd of people around us in the 20th row. Just as we were moved up, Paul sang ‘Blackbird’. I crouched down, Jaimie perched on my lap, and cried as he sang, remembering the miracle he gave us eight years earlier. It was a surreal moment. Judd believes “There are so many ways that you can share the gift of music with your child but the most important thing is to have fun and make it a positive, successful experience!” Just before the final song of the night Paul not only read the girls’ sign and gave them a ‘thumbs up’, but, he also read my shirt and gave me a wink. In that moment,when our eyes met, I silently thanked him for all he’s unknowingly given to us. Though he may never know the powerful effect his music has had on my Jaimie, we will always treasure seeing him sing ‘Blackbird’ and know he took my message of thanks on my shirt with him when he left Edmonton: ‘Thank you for giving her broken wings the strength to fly.’ Music is a powerful force. And the musical magic of Paul McCartney shows how deeply our children feel it. w Chynna Laird – is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters Jaimie, Jordhan, and Sophie and son, Xander. Visit her at www.lilywolfwords.ca

W in it!

Enter to WIN at PSN Contests

Ryan Judd

Founder of the The Rhythm Tree Ryan Judd is a board certified music therapist who specializes in working with children with developmental disabilities. Ryan is also the founder of The Rhythm Tree, www.TheRhythmTree.com, which has recently released The Rhythm Tree Music Therapy DVD Package for children with special needs. “I see children with special needs struggle every day to do what most people take for granted. I believe that all children deserve to learn and develop in a fun, creative and motivating atmosphere,” said Ryan Judd, MA, MT-BC, who has been working with children with special needs for more than 12 years.“My mission is to teach parents, educators and therapists how to use music to help children with special needs learn, grow and thrive!” The Rhythm Tree Music Therapy Package consists of four interrelated components (DVD, guidebook, CD, percussive instruments) that provide the tools necessary to effectively engage kids with music. The Rhythm Tree Music Therapy Package is available for $99.99 and can be purchased at www. TheRhythmTree.com, or you can enter our Contest/Giveaways to win one of two Packages donated this month.

Contributing Author: Ryan Judd, MA, MT-BC Board Certified Music Therapist. Visit www.therhythmtree.com Parenting SPecial needS.org

special focus dance therapy

e k i L l I Fee g n i c n a D

by Susan Parziale

was very pleased when I received the email from my editor that this issue is about music, dance and movement. Although I usually write about organizing, I wanted to touch upon the need for our children to be included in classes that offer music, dance and movement. Maybe this is a little about organizing – I kept detailed notes on this journey! Here is my story… I started dancing school at the age of 5 and continued until I was 17 and loved every minute! So when I had a daughter in 2003, I was excited to introduce her to dance when she was ready. When my daughter was two, she was diagnosed with Autism. Because I did not know much about Autism at the time, I was thinking “there goes my dream of her in dance classes, recitals and glitzy costumes”.

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Photos courtesy Susan Parziale

A Place to Start

As my daughter received more and more services to improve her speech, behavior and understanding of simple directions, my husband and I began to search for an adaptive dance class in the summer of 2010. We found nothing so we decided to email dance studios in the area to ask them if they would consider offering an adaptive class. Everyone I spoke with said they did not have the staffing to accommodate an adaptive class, but, wished me well in my search. I emailed (and called) at least 10 studios in the area and only one studio said they were willing to try. Well, her exact words were “I have never taught dance to special needs children but I believe all children deserve to dance...so I will give it a try.” I was thrilled out of my mind! Three other families in the area jumped at the chance to join this class. Initially, we only wanted the class in the summer to keep our kids busy (because, as we all know, services slowdown in the summer). However, we were very pleased, and surprised, that the owner and instructor of the dance studio wanted to continue into the fall and include them in the recital the following June.

A Place to Belong

Fast forward to 2013: The adaptive class is still going strong and now has two classes for special needs children and they are part of the recital each year. Students from the area are the aids in the class for our little dancers and do it on a volunteer basis. How awesome is that?!!

A Heartfelt Thanks

I want to say a big thank you to Helene Joy School of Dance in Middleton, MA for saying “yes”, when others said “no”. Because of generous people that are willing to try, I found this dance studio for my daughter and will never give up searching for programs that are willing to try to include our children. w Susan Parziale is a certified Professional Organizer. She is also a mother to 8 year old daughter with Autism. Visit www.susanparziale.com

What is Dance/Movement Therapy? The American Dance Therapy Association, founded in 1964, defines Dance/Movement Therapy as the “psychotherapeutic use of movement as a process which furthers the emotional and physical integration of the individual”

What does a session look and feel like? Dance Therapy fosters free and

spontaneous human movement, reduces stress, and is a vehicle for expressing emotions. It helps increase range of motion, awareness of personal space and reduces residual tension.

Who can benefit?

Children, adolescents and adults with histories of abuse and trauma, eating disorders, psychiatric diagnoses, Autism Spectrum Disorder, language and learning differences, physical and behavioral problems, and also those who want to get in touch with their body’s wisdom and their own creativity.

Can parents effectively incorporate dance/movement therapy into their daily life with their special needs child? I think,

sometimes, parents need permission to BE with their children with special needs rather than DO something. Dance Therapy provides a model for being with their child by allowing the child to take the lead. This involves joining in with what their child is interested in doing, without correcting or directing.

Heidi Ehrenreich, MS, BC-DMT, CCC-SLP has been working as a Dance/Movement Therapist and Speech/Language with children and adults since 1971. Presently she maintains a private practice, Circles of Communication, working with families and educational institutions.

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CHAMPION FOR MALLORY Donnie Osmond by Christine Reynolds

allory Reynolds loves music! As a baby we would let her listen to music on the ipod and she would rock back and forth. As she grew, she seemed to prefer Donny Osmond’s music more and more. She likes the “adult” Donny music over the kid’s music. When Mallory was 5, all she wanted to do was meet Donny Osmond. In 2011, I called and asked Donny if he would meet her; he didn’t even bat an eye and we met the next week. The night she met him she was so happy and so relaxed, too. This is a child who never left our home for two years because she was afraid of red stop lights! He spent 30 minutes just playing and talking to Mallory. Donny usually has Meet and Greets after his show, but, that night it started late because Mallory was showing him the Lady Bug pictures she had drawn for him. When it was time to leave Mallory yelled back over her shoulder “Bye, Donny”, and he yelled back “Bye Mallory, I love you.” From then on she told her doctors all about Donny and that he loved herbecause he told her. Mallory has Turner syndrome, periventricular nodular heterotopia, Ehlers–Danlos syndrome, ADHD, Anxiety disorder, CHD, Aspergers, Bells Palsy and aortic root dilation.

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We have gone to several events and as soon as he sees her he says, “Hi Baby,” and gives her a big hug. He has always been very responsive to Mallory and when they see each other, he always reaches out to her and makes her feel at ease. Mallory’s doctors have clued right in on the beneficial effect Donny Osmond has on Mallory. Her Pediatrician and heart doctor both have Donny as the background on their computers just to show Mallory when she comes in. Donny’s music has been used heavily in Mallory’s therapy. Mallory is slow in responding to people, but, when asked about Donny, or asked anything about singing and how he sings, she is eager and replies quickly. Her calm-down time consists of listening to Donny on her ipod. Mallory has trouble sleeping, but she responds so well to the sound and tone of his voice the she goes to sleep every night with his music playing. Mallory is now 8 and she has run the last two years in the Danny Gans Champions Run for Life that is hosted by Donny Osmond. It is a collaborative partnership to raise money for the Nevada Childhood Cancer Foundation (NCCF). Together, Donny Osmond and NCCF, as well as friends and volunteers, raise money for programs and services specifically for local families with children diagnosed and suffering with life threatening illnesses. w Photos courtesy rebecca reynolds

“Everyday Heroes” NOMINATE your “Everyday Hero”

Nina Eaton

view all our

Hereos at

www. parentingspecialneeds. org/heroes

Honoring Everyday Heroes.

e are looking to recognize and honor “Everyday Heroes” in our magazine and also on our site. We honor ONE hero per issue. Do you know of someone that you would like to nominate? Someone who has made an impact on you or on your child’s life? Anyone can be nominated. This is a wonderful way of saying how much that hero means to you and to your child.

Calista Cares

It is very easy to do:

* * * *

Please share your story about the person (word count up to 300) and how they have made a difference.

Dr. Nelson Mane

Please include a picture of your hero. Send your submission and photo to: submit@parentingspecialneeds.org Please put the word “Hero” in the subject line and include YoUr contact information.

Looking forward to “Honoring” your HERO! Patricia Biagioli

Promoting Executive Functioning Over the Summer Vacation

by Ernst O. VanBergeijk, Ph.D. , M.S.W. and Paul K. Cavanagh, Ph.D., M.S.W.

ccording to the Encyclopedia of Autism (2013), individuals on the autism spectrum have a pronounced impairment in executive functioning. Executive functioning (EF) impairments are not unique to autism and can be found in children with other types of disabilities, such as Attention Deficit. During summer vacation, without the structure of the school day, some students lose the gains they made in strengthening their executive functioning over the course of the school year. What is executive functioning (EF) and what can parents do to promote EF during the summer vacation? Solomon (2013) defines executive function as “…a broad term used to describe the set of cognitive processes required to prepare for and execute goaldirected behaviors” (p. 1179-1180). It is described as a ‘higher level cognitive process that involves goal or rule representation, inhibition, cognitive flexibility or switching from task to task, and planning. ’Problem solving and abstract reasoning are thought to be a part of executive functioning (Solomon, 2013). A free resource for parents to help them understand executive functioning is available on You Tube. It was created by Dr. Russell Barkley from the Medical University of South Carolina and the Child Mind Institute. Dr. Barkley has spent his career studying ADHD and impairments in executive functioning. This short, 3 minute video beautifully conceptualizes the notion of executive functioning. It can be found at: www.youtube.com/ watch?v=GR1IZJXc6d8. Dr. Barkley conceptualizes executive functioning (EF) as having 5 key components: (1) Inhibition of Behavior;

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(2) Visual Imagery (non-verbal working memory); (3) Self Talk; (4) Emotional Control and (5) Planning & Problem Solving (Prioritizing). In the video he briefly explains each of these components and gives examples. For example, Visual Imagery, according to Dr. Barkley, requires visual working memory comprised of hindsight, foresight, and a visual sense of time. Self-Talk, he explains, involves verbal working memory, or the ability to talk oneself through solving a problem or reaching a goal. For parents interested in more of Dr. Barkley’s research on executive functioning deficits we recommend Executive Functions: What They Are, How They Work, and Why They Evolved, Barkley (2012). Two of the essential elements in strengthening executive functioning skills are externalizing cues and checklists and practicing the components of executive functioning with the aid of external coaching. In the summer parents are the most likely coaches. The anchor to any such plan is the use of a planner. There is much debate over the efficacy of electronic planners vs. physical planners. Ultimately something that is used is preferable to a system that is neglected.

Ten Tips to Promote Executive Functioning in children over the summer:

Whatever planner is chosen, the key will be to use it. Personally important goals such as meeting with friends or spending time on a preferred hobby need to be part of the planning process in order to make it meaningful and intrinsically rewarding. The coaching aspect involves devoting time to sit with the planner and identify specific activities to be entered. Discussing, and, in some manner, visually identifying how long scheduled activities will take is a crucial aspect of strengthening executive functioning. Research has clearly demonstrated that a poor sense of visualizing time is a key component of an executive functioning deficit. Once there is a rough plan for a month, the ideal is to dedicate time each evening (just before or after dinner, or just before bed) to review the plan for the next day –with major goals in writing and some visual representation of how long it will take. This should be followed-up with some “check-in” early in the morning or at lunch-time about how that day’s schedule is going. If the parent is working another “coach” needs to be identified to complete this check-in at least once during the day. A second summer-long activity should be practicing the use of non-verbal and verbal working memory. As a “coach” seize times when your child has scheduled to do some less-preferred activity (e.g, studying, practicing an instrument, doing chores) but wants to continue with a more preferred activity (e.g., sleeping or playing video games). Have your child verbalize, or type-out what has happened in the past when she or he has not made a good choice and what happened. Also, have them verbalize or type-out what they expect will happen if they don’t do what they have scheduled and what will happen if they do. The point is to externalize the use of both non-verbal and verbal working memory in order to teach the student how to be their own “coach”. References:

Barkley, R. (2012). Executive Functions: What They Are, How They Work, and Why They Evolved. New York: Guilford Press. Solomon, M. (2013). Executive Function. Pp. 1178-1182. In: Volkmar F.R. (Ed). Encyclopedia of Autism Spectrum Disorders. New York: Springer. Photos courtesy © photoxpress.com

Use a planner for daily and summer-long tasks and goals.

Designate “check-in times” to review with your child the goals they accomplished throughout the day.

Praise instances where they inhibited their emotions or impulses to reach a goal.

Praise instances where they demonstrated flexibility

Model and practice with your child examples of talking to oneself about possible solutions.

Use checklists to organize tasks that need to be completed.

7 8 9 10

Use a visual list or pros and cons to help your child consider possible solutions to a problem and help them prioritize problems and solutions. Have them be publically accountable to another person regarding the tasks they agreed to engage in or goals they committed to accomplishing. Use count down timers and audible alarms to help them gain a visual sense of time. Negotiate some rewards for following the plan for the summer – more time on preferred activities as intermediary rewards and something tangible for being 70 or 80% successful in following the plan for the whole summer.

Ernst VanBergeijk is the Associate Dean and Executive Director, and Paul Cavanagh, is the Director of Academics and Evaluation, at New York Institute of Technology Vocational Independence Program (VIP). The Vocational Independence Program is a U.S. Department of Education approved Comprehensive Transition and Postsecondary (CTP) program. www.nyit.edu/vip . The authors also administer Introduction to Independence (I to I) a seven week summer college preview program for students ages 16 and up.

MAR/APR 2013

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ÂŠ Hicster / photoxpress.com

Searching for the right SUMMER CAMP!

Check out these Special Camps --->

PARENTING SPECIAL NEEDS // SPECIAL ADVERTISING SECTION

SUMMER CAMPS

r a M e e L om Camp

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milestone! Lee and Ari’s combiamp Lee Mar marks its nation of wisdom, experience, 61st season this year and innovations, have made Lee as the foremost camp Mar a very unique program, with for children with special needs. campers attending from all over Founder and director, Ms. Lee the USA and overseas. Campers Morrone, celebrates her 61st learn new skills, make friends, season; and Ari Segal, owner and and build self esteem, all while executive director, celebrates having fun! Ari and Lee also bring his 21st season! 21 seasons an Donna incredible their MA, personal experiences being working together— by B. Wexler, CCC-SLP

parents of children with special needs themselves. Ari also directs The Guided Tour, Inc., a supervised vacation program for adults (17 & up) with developmental challenges. 2013 marks The Guided Tour’s 41st year! Both programs can be visited at www.leemar.com and www.guidedtour.com.

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Camp Lee Mar

A Life Changing Experience!

Our 61st Season!

2013 Dates June 22-August 9 check out our website at

www.leemar.com

• Fun, traditional summer camp activities • Caring, nurturing staff • Academics • Speech & language therapy • Daily living skills

• Older campers enjoy weekly social dancing with end-of-summer “Prom” • Optional trips during the summer • Exceptional facilities including air conditioned bunks and buildings • Junior Olympic heated pool

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Parenting SPecial needS // SPecial advertiSing Section

Summer camPS

Quest’s Camp Thunderbird Summer camp for children of all abilities!

ocated just north of Orlando, Florida, Quest’s Camp Thunderbird has been dedicated to providing a real summer camp experience for children and adults with special needs since 1969. Because of the physical and behavioral challenges associated with Down syndrome, autism, Cerebral Palsy and other developmental disabilities, these individuals aren’t typically eligible to attend traditional camps.With a variety of exciting activities, experienced staff and endless fun, Camp Thunderbird is their chance to learn new skills and focus on the remarkable things they can do, while making new friends and unforgettable memories. Our youth camp sessions specifically focus on inclusion – where children of ALL abilities are able to play, learn

and grow together. For children with disabilities, the feeling of acceptance from attending camp alongside ablebodied peers is invaluable. For children without disabilities, our program creates the chance for them at a young age to recognize others as individuals, not by their disabilities – helping to create a more empathetic and understanding community in the future. Quest’s Camp Thunderbird’s six and 12-day overnight sessions also give parents and guardians a much-needed break from the demands of 24-hour caregiving. For many families, this respite is their first chance to relax, spend time with friends, or even take a vacation knowing that their child is receiving quality care and attention.

The Quest Team, through quality and innovation, builds communities where people with disabilities achieve their goals.

Quest’s Camp Thunderbird invites you to explore their camp by contacting them at 407-889-8088 or www.questinc.org/camp

Growth. Adventure. Understanding. Scholarships available for children with and without special needs.

www.questinc.org/camp 407.889.8088 909 E. Welch Road, Apopka, FL 32712

Parenting SPecial needS // SPecial advertiSing Section

Summer camPS

New York Institute of Technology (NYIT) introduction to independence (i to i) Program

he Introduction to Independence (I to I) Program is a seven week summer bridge program for students ages 16 years old and up, that is designed to help them transition from high school to post-secondary education and independent living. Students in the I to I program have neurologically based learning disabilities or are higher functioning on the autism spectrum. Students live in a NYIT residence hall on the Central Islip campus in suburban Long Island, NY. They eat in the NYIT cafeteria and take classes on the CI campus. The goal of the program is to habituate the student to living independently in a college like setting. During the day students will work in an internship 3 hours a day - 4 days

a week for which they are paid a small stipend. Course instructors use that stipend money to teach the students critical independent living skills like budgeting, banking, and checking. Fridays in the program are dedicated to travel training, an important independent living and vocational skill. Students take the Long Island Rail Road (LIRR) into Manhattan where they learn to use NYC subways, buses, trains and ferries all while visiting popular tourist attractions. The NYIT Introduction to Independence (Ito I) Program accepts funding from local school districts for those students who have extended year services. Please plan on attending our Open House Saturday April 6, 2013 at 10:00 AM at our Central Islip location.

To Maximize the potential of individuals with learning differences by: Teaching skills and strategies, and Providing the support necessary for successful and independent lives. New York Institute of Technology (NYIT) invites you call Sheree Incorvaia, Director of Recruitment, at 631.348.3139 for your reservation today! or

sincorva@nyit.edu

Maximize the potential of your child with learning differences We teach skills, strategies, and provide the support necessary for successful and independent lives.

Call Sheree Incorvaia, Director of Recruitment, at 631.348.3139 for your reservation today!

www.nyit.edu/vip

NEW YORK INSTITUTE Of TECHNOLOGY

super health

ENCOURAGING Your Child To Stay Active Year Round by Douglas Haddad, Ph.D.

ith all kinds of temptations available for your child to stay inside and play video games, watch television or just hibernate during the cold months, you have to make that extra effort to get your kid outside to play during the colder months. Researchers propose that children burn half the amount of calories during the winter as they do during the summer. Upon coming out of the winter months, help your child get active and keep fit by engaging in an activity that he/ she would enjoy doing. Doing so can establish a lifelong pattern of being active and prevent against obesity and other health-related issues. Although children are usually bursting with energy, they oftentimes lack the self-discipline to regularly get exercise. As they get older, it may become more challenging to find them opportunities for continuous movement for 45-60 minutes a day, every day. Reasons for a drop in physical activity include: increased academic demands, dislike in sports, a lack of active role models and/or lack of participation in a physicalrelated activity or sports team

Physically active children are more likely to: P sleep better, P be academically motivated, P be alert with better concentration,

P have stronger muscles and bones,

P be in good cardiovascular shape, P reduce the risk of other diseases, P have a higher self-esteem and a positive outlook on life.

“It’s not about government telling people what to do. It’s about each of us, in our own families, in our communities, standing up and demanding more for our kids.” - Michelle Obama

(First Lady of the U.S.; developer of the “Let’s Move!” program for kids)

Tips to get your child motivated to move more: Show exercise as FUN by being a role model! Rather than telling your child to go outside in the cold and play while you sit inside watching television, go out there and do an activity together. If the environment isn’t conducive for going out to play, take your child to play an indoor activity.

Many areas have free recreation centers that offer a variety of activities such as swimming, skating, karate, dance and playing different sports. Encourage participation in school-related activities. Allow your child to choose his/her own activity. The more inherently motivated a child is to do the physical activity, the more likely he/she is to continue doing it. Make physical activity a part of your child’s daily routine --- for 45-60 minutes a day. It doesn’t have to be all done in one shot. You can sprinkle it over two or three sessions throughout the day. Like “Save Your Kids Now” fan page on Facebook. Be a part of this interactive community designed for both adults and children to discuss real issues pertaining to today’s youth, along with practical solutions for any of today’s unique challenges. For more information on helping a child obtain overall SUPER HEALTH, please visit: www.douglashaddad.com. w Douglas Haddad, Ph.D. (“Dr. Doug”) is a clinical nutritionist, full-time public school teacher in Connecticut and the author of parenting/ child guidance book Save Your Kids…Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields.

Photo: Matthew and dad on tandem, Manhattan Beach, ca ~ ride For Special Kids

MAR/APR 2013

Parenting SPecial needS.org

for a Variety of Disabilities & Disorders by Barrie Silberberg

sually, I mainy write about the Gluten Free/Casein Free www.gfcfdiet.com, www.puttingyourkidsfirst. com or Feingold Diets www.feingold.org for children with Autism Spectrum Disorders or ADHD/ ADD. Today, however, this column will be about some other specialized diets for children and adults with other disorders and disabilities. This information will get you thinking about how to help your child thrive and what is best for your child and your family when it comes to proper nutrition. There is a lot of research out there regarding how food is responsible for causing harm by way of allergies, intolerances, and more and how changing one’s diet can improve, remove, enhance, and correct behaviors, symptoms, illnesses, aches and pains, digestive systems, respiratory systems, immune systems, circulatory systems, nervous systems and other systems within the body. Another passion of mine, and one I also write about is discussing details concerning healthy, wholesome, natural, and organic foods that are devoid of pesticides, hormones, additives and chemicals. An excellent book on this subject is Robyn O’Brien’s, The Unhealthy Truth. Her book speaks about the toxins in foods and how damaging they are to the human body. Her research began when one of her daughters had a horrific allergic reaction to eggs. She learned about all of the poisons put into the food in America, causing horrific diseases, disorders, ailments and harming all of our children, including those who struggle everyday with disabilities. Food can make a huge difference in who we are, how we act and how we feel. Many other countries have banned toxins in foods, while the good ‘ol USA continues to use harmful chemicals to “enhance” our food, making for a very sick and ailing country. The first and most important step is to READ LABELS. Stay away from anything you do not understand. Stay away from all chemicals, artificial ingredients, pesticides, nitrites, aspartame and other harmful ingredients. Focus on REAL food! Here is some special nutritional advice that might help you and your family:

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Ketogenic Diet For: Seizure Disorders, LennoxGastaut syndrome, Epilepsy, infantile spasms, Rett syndrome, tuberous sclerosis complex, Dravet syndrome, Doose syndrome, and GLUT-1 deficiency

Diet Link: www.epilepsy.com/epilepsy/treatment_ketogenic_diet This diet is usually recommended for children, rather than adults, and requires foods that are low in carbohydrate and high in fats. The word Ketogenic means ketoneproducing. Ten to fifteen percent of children who utilize this diet can become seizure free! More than fifty percent show a vast improvement in seizures. This diet is prescribed by a physician and must be followed closely by a dietician. Ketones are formed in the body when fats are used for energy. The body uses carboyhydrates, which can be found in breads, sugar and pasta, etc. for its fuel. When on this diet and carbohydrates are lowerd, fats then become the primary source of fuel for the body. The dietician will provide the calorie intake and amount of required fats and carbodyrates, based on the weight of the child. Fats that are usually recommended on the Ketogenic diet are: butter, heavy whipping cream, mayonnaise, and oils. For more information: The Ketogenic Diet: A Treatment for Children and Others with Epilepsy, by Drs. Freeman and Kossoff. The Charlie Foundation www.charliefoundation. org and Matthew’s Friends at www.matthewsfriends.org

Bipolar-conscious diet

For: Bipolar Disorder, Depression Diet Link: www.healthcentral.com/bipolar/action-plans-3229-143. html

Certain foods and supplements have been found to help those with Bipolar Disorder to lessen their symptoms. By adding Omega 3 fatty acids to one’s diet, studies have shown stress to be lessened and better focus occurs. Many people with Bipolar disorder take MAO inhibitors to treat depression. If this is the case, foods with tryamine should be avoided. These foods are: aged or mature foods such as: cheeses and wines, sour cream and yogurt, caviar, dried fish, fermented sausages, game meat, liver, non-fresh

special diets health & fitness canned meat, pickled herring, salted fish, eggplant, Italian green beans, lentils, lima beans, sauerkraut, snow peas, soy beans, avocado, bananas, figs, raisins, raspberries, red plums, ale, beer, alcohol-free and reduced alcohol beer and wine, caffeinated colas, coffee and tea. Those taking Lithium need a balanced salt intake, as too much or too little can effect the way this medication works on ones system. Caffeinated beverages should be avoided as well, as they can affect sodium levels. This article discusses various nutrition aspects for children with autism, ADD/ADHD, cerebral palsy, Down Syndrome and other disabilities or disorders. http://www. healthresearch.com/special.htm It was written by a Robert Theil, PhD, who helps children with special needs achieve great success. This article lists many resources to further investigate nutritional implications that could assist your child in improving his or her behavior and physical and mental health. Cerebral Palsy: Some studies have shown that adults with CP have difficulty in metabolizing calcium in their bones, thus causing low bone density, which could cause broken limbs. These studies have shown that this

Eric Chessenâ&#x20AC;&#x2122;s

is due to long-term use of anticonvulsant medications. Children with severe CP have developed osteopenia, which is the beginning of osteoporosis. Down Syndrome: Many studies have found that a large percentage of children with Down Syndrome have Celiac Disease; an inability to digest gluten (wheat, rye, barley and oats) and thus must be on a gluten free diet or life. Some studies have also shown that children with Down Syndrome should avoid cowâ&#x20AC;&#x2122;s milk. Adding certain minerals and vitamins to the diet of a child with Down Syndrome could assist with improving cognitive deterioration, growth and facial features. Consult with your health care provider before beginning any new dietary treatment plan. Bring articles to show your provider and if you do not like what he or she comments, you should look into getting a second opinion, if you believe this is something you want to attempt to help your child. w Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-byStep Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others Interventions. Her web site is: www.puttingyourkidsfirst.com

Eric Chessen just so happens to be one of the best thinker-doers I have ever encountered in the fitness industry. His combination of practical skill and expert knowledge is an incredible value to those who serve children with different needs, and of course to the children he works with directly on the Autism Spectrum. It has been my privilege to work with him and to know him. Dr. Kwame Brown, Neuro-Scientist/Child Development Expert

Autism Fitness

Develop Fun and Effective Fitness Programs for Anyone on the Autism Spectrum

AutismFitness.com

Adapted Phy. Ed.

Is it in your child’s IEP? It should be. by Eric Chessen, M.S., YCS

everal years ago I was working with one of my inhome athletes and his visiting uncle asked “Doesn’t he get gym at school?” I assumed the answer was, as it is for many school-age individuals with autism, “not really.” The problematic lack of adapted PE programs across the US is systemic. There are, however, a few main points to consider. The goal for any IEP is to provide the same opportunities, as appropriate to their abilities, as neurotypical, or general population students. So what is adapted PE supposed to include? How does it compare to Physical Education for other students? If you think that physical fitness and regular activity should be widely available to students with special needs, read on. If not, you should be perfectly content with the current state of Adapted PE.

The IDEA Act of 2004 states that students with disabilities shall have access to “physical education,” defined by the development of: • Physical and motor skills • Fundamental motor skills and patterns • Skills in aquatics, dance, and individual and group games and sports (including intramural and lifetime sports). http://www.wrightslaw.com/info/pe.index.htm

In the most current version of New York State (where I reside), it is stated that Adapted PE is a “Direct” and not a “Related” service, meaning it is a requirement for all students with disabilities. http://www.p12.nysed.gov/ciai/pe/documents/qa.pdf Both the federal and state mandates are clear in that students must have access to physical education programs, which confuses me more each time I speak at a conference and hear from attendees that they have essentially no adapted PE program in their school, or district, for that matter. Usually, it is explained as a “budget issue,” but it is odd to me, and yes I have a professional bias, that while other academic programs are spared (barely, but still), physical education is a comparatively easy curriculum to cut. Parents should know that their school district is required to provide and adaptive PE program. As a parent it is, unfortunately, important to not assume that simply because Adapted PE is on the IEP (and it should be), that adequate programming is being provided. In the introduction to this article I mentioned that there are some systematic issues with Adapted PE. One of those problems is the predominant focus on team sports (basketball, football, soccer, baseball) by general physical education programs. Many Adaptive programs try to emulate what goes on in the typical PE class, so there are “adapted” versions of these sports. Here is where, from my perspective as an Exercise Physiologist, things begin to unravel:

Problems with using Sports-based activities as a foundation for Adapted PE –

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Many individuals with ASD and related developmental disabilities do not have the prerequisite gross motor skills (basic strength, stability, and movement) to perform more finite sport-specific activities

fun fitness health & fitness –

Sport-specific activities do not have much generalization (cross-over) to daily living skills – The concepts in sports (competition,winning, losing, offense/defense, rules) are often too abstract for those with ASD/DD – When things are too abstract, they usually aren’t reinforcing or motivating – Sports require a good amount of set-up and instruction time, taking away from the limited minutes available for activity. The Inactive: Active ratio is too high – It is difficult to regress, or simplify sports activities to a point where they provide benefit for many individuals with ASD/DD

Advantages of Movement and Active Play-based Programs as a foundation for Adapted PE –

Photo credit qwrrty on Flickr / cc

Can be individualized to meet the specific goals of the IEP (increased upper body strength, coordination, hip mobility, etc.) – Activities can be modified for individuals within a group/class and for the group/class as a whole – Greater opportunity for exploratory play (initiation) and self-efficacy – Ability to develop more strength, stability, motor control, and movement planning through movementbased activities that include bending, pushing, pulling, crawling, climbing, jumping, etc. – Can improve in both adaptive and cognitive abilities in a shorter amount of time than sport-based activities (more motivating/reinforcing, greater ability to understand concepts, contingencies, and directions) – Can develop specific activities based around social skills and other academic/life skill targets – Can incorporate a wider variety of novel equipment

(including sandbags or beanbags, medicine balls, cones, spot markers, hula hoops, ropes, etc.) I like lists for everything: from my own training sessions to the grocery store to chores around the house. I keep a written list of to-do stuff for my business, home, and personal life right next to the keyboard on which I’m writing this article. Below is a list of questions that parents should be asking about their child’s Adaptive Physical Education IEP:

8 Questions to Ask 1) How many hours of APE is my child receiving each week?* 2) Who wrote the IEP for his/her APE program? 3) What are the current goals for his/her program? 4) Why were these goals chosen? 5) Who is going to be running the program? 6) How will they measure progress? 7) What activities will be involved in their physical education program? 8) Are there specific activities that we can incorporate in the home or other places?** *Specific mandates are set by the state board of education **If you want to get involved yourself About three years ago I developed the PAC Profile as a template for Adapted PE programs. It is meant to be a foundation for developing individualized, movementbased programming and having the ability to track goals in the areas of Physical, Adaptive, and Cognitive functioning. Because federal mandates are, and state mandates tend to be, vague with respect to an exact curriculum, we have the opportunity, as professionals and parents, to reclaim physical education as the foundation for health, independence, and socialization when the right questions are asked and the right curriculum is provided. w 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

MAR/APR 2013

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fun&functional Ray (9) and Michael (11) Anthony love to play golf with their family. ~ Image courtesy Kim Anthony

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fun & functional learning yoga

Twice Exceptional Encouraging the unique gifts among 2e kids and beyond. by Kami Evans

real life

Mirror Mirror

he concept of “twice exceptional” is the ability to identify a challenge and then seek the equally amazing reaction to that challenge. When kids with special needs are said to be gifted, they are considered twice exceptional, or 2e. For instance, my twice exceptional daughter has right-sided hemiparesis, which involves an injury to the left side of a person’s brain. While she has challenges with mobility on her right side, my daughter’s IQ is 130 and she can memorize anything. At age 5, she can now recite a book back verbatim by looking merely at the pages, not at the words. That is, in essence, my daughter’s BINGO “free square” ; her ability to shine. We should seek all of the amazing qualities in everyone we surround ourselves with on a daily basis. If someone is not doing what you want, or challenging you, then try to seek out that person’s gifts and move toward embracing related qualities. Partner poses epitomize this concept. Here are some to attempt.

Mirror Mirror

Seesaw

Kami Evans is a Registered Yoga Teach and Children Registered Yoga Teacher, she is also a Family and Child Advocate and speaks at various events in the US and UK. Contact for more info 800-5847940 or kami@elahiyoga.com

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Stand or sit in front of your child. Next, encourage your youngster to lead with movements using their arms and legs. As you follow your child’s movements, letting them enjoy the show, bring a calming breath into the pose. Have your child similarly breathe in with every small movement and exhale longer with every large movement. This is incredibly calming for the body and brain. It also releases toxins.

Seesaw Facing your child, get into a V position and have your child do the same. Your toes should be touching your child’s toes. If your youngster needs support, use the wall or position your child’s legs on yours. Then, holding hands, rock back and forth like a seesaw. When you move toward your child, breathe out. When you bring your child toward you, breathe in. Sing a song during the posture, if you like. Just make sure your breath is balancing the movement. It’s is a great way to connect and feel exceptional along with your child.w MAR/APR 2013

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Postcard Diaries & Memorabilia Bags by Barbara Sher

ecording memories when you travel with the family is always a good idea—in theory. The reality might be very full days with the challenges of finding meals that satisfy, beds that comfort and little time for writing. Enter the Postcard Diary. Postcards are still ubiquitous at travel spots and they only have so much room to put thoughts, feelings or actions. In short, it is very “do-able”. You can share a postcard with your child or children at each destination or you can each have your own. Mail them to yourself and when you get home you can make a hole in one corner of each postcard, string them all together with a ribbon, and have a nice remembrance of your adventure. Or, you can encourage your child’s memory and attention to detail by bringing along a Memorabilia Bag. Have your child collect small memorabilia during the trip, such as the wrapper from some exotic candy or the tickets to an interesting show. When you get back home, paste these in a scrapbook and have the child write a note about the meaning of each item and why it mattered (or stood out) as something special. This can be simple or be turned into an elaborate book with detailed written memories and added homemade illustrations. One way another— To Pack List or postcards, scrapbook or detailed book, your family will record its unique history.

Before you even leave for the trip, you can get your children involved in the packing. Make a list of what your child will need such as

4 3 pair of long pants 4 4 t-shirts

4 2 long sleeve shirts 4 1 heavy sweater

If your child can’t read yet or you want to influence which clothes are packed, draw a picture of, say, a sweater and color it the color of the sweater you’d like him or her to pack. Figuring it out ahead of time, and having your child pack his own suitcase, adds independence to his sense of self and subtracts one thing on your list!w This game is adapted from Barbara’s new book, THE WHOLE SPECTRUM OF MOTOR, SOCIAL AND SENSORY GAMES: Using Every Child’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 Barbara Sher M.A.,O.T.R, an occupational therapist and author of nine books on childrens games. Titles include EARLY INTERVENTION GAMES SPIRIT GAMES and EXTRAORDINARY PLAY WITH ORDINARY THINGS. Send request for workshops to barbara.sher@gmail.com or www.gameslady.com

MAR/APR 2013

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“Foodie” Fun for Kids: Rice Tortilla Pizza Encouraging Speech & Creating Yum!

by Sarah Choueiry Speech Foodie

Ingredients

makes 1 Pizza 1 Roman Tomato (or any kind you like) sliced 1 rice tortilla 2 slices of ham (you can use turkey too if you don’t eat pork, or not include meat at all) Cheese (any kind you want that melts well: cheddar seems to be the favorite of little ones) Olive oil Salt and Pepper.

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History

create, cook, Talk!

This recipe came from my love of pizza! I discovered these rice tortillas at Trader Joes and fell in love with them. I also enjoy the taste of the fresh tomatoes instead of tomato sauce. It is a healthier version of pizza! You can eat it for breakfast, lunch, dinner or a snack. I hope you enjoy this as much as I do and as much as the many others who have tried it do.

Suggested toppings: • Black olives • Chopped Basil Be creative; come up with your own!

MAR/APR 2013

Instructions

Preheat toaster oven for 350 degrees

Parent: Cut up the cheese (if it is

not already shredded) and slice the tomato.

Kiddo:

Get the rice tortilla out and spread the cheese over the tortilla.

Kiddo: Get the two pieces of ham

and tear into small pieces and place it on the tortilla. Put the tortilla with the cheese and ham on it into the oven (with the help of an adult).

Parent: Let it toast for about 5-9

minutes or until the tortilla is browned and cheese is melted. Remove and place on a plate.

Kiddo:

Drizzle a little olive oil over the sliced tomatoes, as well as salt and pepper. Measure out in a bowl for your child how much you would like to use in case they are younger and might be tempted to pour a lot.

Kiddo: place the tomatoes onto the pizza, cut it up and enjoy!

a l” es n o i t c n u F & n u F “ asy recip s healthy, e

u . Share with h your kids it w e k a m that you on our See them in

Kids r o f n u F ” ie d o o “F

You can also make it a vegetarian pizza and remove the ham. Language Time:

This is a great recipe to use to work on sequencing. You can print out the pictures and talk about each step. Then you can have your child place the pictures in order and tell you how to make the rice tortilla pizza. You can have your child conduct their own cooking show and then show and tell you the steps needed how to make a rice tortilla pizza. This helps with creativity, building confidence and working on their expressive language skills!w

Sarah Choueiry’s , provides parents with healthy, nutritious and easy recipes that help improve their child’s language skills, imagination and confidence. Speech Foodie gives ALL children the chance to be creative while bonding with their family. www.speechfoodie.com

MAR/APR 2013

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fun & functional learning to sign

ASK Angie ASL - I.E. P. Meetings by Angie Craft

L. Marie/Flickr/CC

Holidays

Parents

VIDEO DEMONSTRATION: This video demonstrates the

Name

ASL signs for common words used for, and throughout, an IEP. Words included in video: Parents, Name, I want, Choices, Learn, Plan, and Success.

Tip for working with the deaf

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

TIP: American Sign Language is NOT a written language. It is a visual-gestural language, so native speakers often think of things in pictorial ways, verses, phrases or specific words. Keep everything visual, finger-spell words and combine with the sign to enhance reading skills.

Plan and be ready for a successful IEP Meeting w

note

ASL is a multi-sensory form of communication that helps children acquire vocabulary more quickly and efficiently.

For more information: follow us on FaceBook @ HandCraftEdASL

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MAR/APR 2013

proud moments® enjoy your life

Sharing “I CAN!”attitudes Freely Expressing Ethan has SPD and convergence insufficiency, yet he was named Student of the Month for his Art. He loves art because it is there and he can freely express himself. I am amazingly proud. w ~ Andrea Gallo (Proud Mom)

“Reaching Inside” ... I know that to most mothers my proudest moments of my children might seem strange. You see, I have two children; one who is “normal”, whatever that means...and that makes me proud of each of my kids in dramatically different ways. When I think of all the major accomplishments of my younger son. It is hard to think of a proudest moment. I am proud of all the accomplishments he makes everyday. I sometimes get the urge to compare my sons and to focus on what is lacking in one or the other. The key to my happiness is being proud of the little things instead. My proudest moment for my younger son was the night of his first sleepover. I am proud that he made a connection, that he felt safe, and that he did something that was new and scary for him.

Ethan exhibiting an “I CAN” attitude Photo courteousy Andrea Gallo

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

You may feel you can only share your excitement or enthusiasm with someone that will really understand. We understand. submit@parentingspecialneeds.org

For my oldest child, my proudest moment was at the end of the summer. He was 10 years old. He volunteered at a camp for preschool aged children. His friends were all attending camps themselves, but, he chose to volunteer. He loves kids. I am used to people telling me how responsible and remarkable he is. It is a wonderful feeling and I am proud of him. But, this is not my proudest moment. You see, whatever he sets his mind to, he can accomplish. He was also running 5ks. You might think my proudest moment was the day he came in first for his age group, but, that was not my proudest moment. It was the time he came a minute behind his best time. I was worried that he was injured. After he caught his breath, I asked what had happened. I am so proud to tell you that my son decided to wait for his friend who needed to tie his shoe. That was my proudest moment because he reached inside and did what felt was right instead of reaching out for accolades and awards. w Brother’s exhibiting an “I CAN” attitude

~ Erika Maxwell (Proud Mom)

Photo courteousy Erika Maxwell MAR/APR 2013

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