Parenting Special Needs Magazine by Ahren Hoffman

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â&#x20AC;&#x153;Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.â&#x20AC;? ~Buddha

May the light of the Season continue to guide us throughout the year ~ Parenting Special Needs Team

Photo by simonsimages on Flickr

Thank you to all who have shared with us throughout the year.

inside this issue... Nov Dec 2014 Features

Moms Share 15 Real Jennifer Schwertfeger “Grace: a

15 24

powerful lesson in resilience”...

Improving Transitions

When it’s Time to Change, You’ve Got to Rearrange

30 Family Where Life Begins & Love Never Ends Gift of a Limb 32 The 3-D printing with Changes in 48 Dealing School Routines During the Holiday Season

psn community news

8 Noteworthy! TOYS“R”US teams with baseball great Albert Pujols to promote Toy Guide Caring, Sensitive Santa Freedom Chair WINNER

it out! 37 check Holiday Gift Guide Gifts for Now and Later

44 Grace: COVER: Courtney & Liam Barnum Image Courtesy: P. Barnumo

56 H O L I D AYS • I N F O R M AT I O N • I N S P I R AT I O N

real life

Ask the

PROFESSIONAL PROFESSION AL

Dr. Doug BULLYING: A real 10 threat to your child and strategies for preventing it from happening

Duty Nursing 12 Private What is it? Why you need it? And how to get it

Gift

The

Grace OF A LIMB

a powerful lesson in resilience...

How do you create peace and 20 joy during the holidays? Our readers share with us how they create it in their lives

NOV/DEC 2014

Parenting SPecial needS.org

inside this issue... Nov Dec 2014 your life

22 28 59

ENJOY The Holidays With Your Special Needs Child

Mommy Time Outs Majestic Drive in Jenison, Michigan

Proud Moments Proud Father Timothy Paul shares

in focus

Gift Guide 37 Holiday Perfect Season To Pretend Encourage Art with Cool Art Supplies Holiday Cheer and Technology for the New Year

Read, Learn & Grow with Books Brain Games for the Season Mom Approved Gifts: Perfect Season for Fun

health & fitness Fitness Fun 50 Phrasing, Praising, And Playing: Why Language is Essential in Movement

59 in every issue

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6 psn contributors 7 from the heart 9 contest/giveaways

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Diets 52 Special Holidays–a Time for Family and a Time for Food

fun & functional of Play 54 Power Can You Do the CAN CAN? Video + Tips 55 ASL FROZEN- Winter Themed Signs fun for kids: 56 “Foodie” Festive Holiday Pretzel Treats

Autism Resources at Your Fingertips! The Autism Community Hub is the best source for resources on Autism Spectrum Disorders (ASD) for individuals and the general community.

AUTISM AWARENESS COMMUNITY HUB

Presented by Children’s Specialized Hospital and Kohl’s Autism Awareness, The Community Hub is the only comprehensive source providing reliable information on Autism in your community. Together, we can build stronger, more inclusive communities. Take an adventure through The Community Hub now! VISIT: VISIT: www.childrens-specialized.org/ www.children-specialized.org/ KohlsAutismAwareness KohlsAutismAwareness

This community service is made possible by the Kohl’s Autism Awareness program at Children’s Specialized Hospital

psn contributors making a difference FOUNDER/EDITORIAL DIRECTOR

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

Tom Snellgrove tom@parentingspecialneeds.org DESIGN DIRECTOR

Chantai info@parentingspecialneeds.org Meme Hieneman

Barbara Sher

Eric Chessen

Barrie Silberberg

Ph.D. in Special Education

Pediatric Occupational Therapist & Author

M.S., YCS, Exercise Physiologist

Author

GRAPHIC DESIGNER

Michael Leisttein info@parentingspecialneeds.org ADVERTISING SALES

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

Curt Mellott MidWest & Lower Eastern curt@parentingspecialneeds.org Tracy Felix

Douglas Haddad

Christina Bartlett

Jim Hasse,

Xlinked1 Special Needs blogger

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

Registered Dietitian

Founder of cerebral-palsy-careerbuilders.com

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

Bob Jaszcz bob@parentingspecialneeds.org WEBMASTER

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

Cristen Reat Co-Founder Bridging Apps.org

Ernst VanBergeijk

Ahren Hoffman

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

(CTRS), Manager of Industry Relations & Partnerships at the National Lekotek Centerr

The greatest gift is a portion of thyself. Sarah Cook

Becca Eisenberg

Amanda Morin

Photographer Cookwire photography

Speech Language Pathologist

Education Writer, Special Education Advocate & Author

~ Ralph Waldo Emerson

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

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www.parentingspecialneeds.org

editorial director from the heart

It’s the Most Wonderful Time...

As the Holidays approach us, it reminds us to stop and count our blessings and celebrate our victories: both big and small. Heaven knows I need to do it more often, but, it nonetheless doesn’t prevent me from still wanting (and hoping for) more for my child. I have come to UNDERSTAND THAT hRESTING ON OUR LAURELSv DOES NOT EXIST in the special needs community. We are always trying to do more for our children; always striving to make their world better. It is the very genesis of this publication: to help families and to provide information and inspiration. With that in mind, our Holiday Issue is always ﬁlled with great ideas, advice and products to help make your Holidays a bit less stressful. This year’s Holiday Gift Guide takes a look at gifts that deliver more than just fun. As our year begins to wind down, I would be remiss if I didn’t stop to say THANK YOU to every one of you and to tell you how grateful I am that you are a part of our community. I am very proud that we ALL share a common desire to make our world better for each and every one of us.

Coming Next Issue New Year, New Plans: Financial, Educational & Life.

Happy Holidays!

Chantai Snellgrove Founder and Editorial Director chantai@parentingspecialneeds.org

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PARENTING SPECIAL NEEDS.ORG

psn community news

Sharing

updates

Caring, Sensitive Santa TOYS“R”US teams with baseball great Albert Pujols to promote Toy Guide Toys“R”Us has unveiled its 20th Anniversary Toys“R”Us Toy Guide For Differently-Abled Kids. As a trusted toy-buying resource for children with special needs, the company is teaming up with baseball World Champion, proud father and special needs supporter, Albert Pujols.

Dear Santa, Caring Santa is an opportunity for children with special needs and their families to enjoy a photo session with Santa. Extra care has been taken to support the sensory, physical and other developmental needs of children so they can enjoy this wonderful holiday tradition. The program is owned by Simon Property Group, and is implemented with input from AbilityPath.org. If you or your family are interested in visiting Caring Santa, please contact the manager at your selected mall.

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As a parent to a daughter with Down syndrome, Pujols serves as a vocal advocate for children with special needs through the Pujols Family Foundation. Pujols is devoted to helping reach Toys“R”Us customers esource. nationwide by raising awareness for this one-of-a-kind resource. To see the guide visit: www.toysrus.com/differentlyabled2014 14

Freedom Chair WINNER The winner of the contest giveaway for the Freedom Chair, sponsored by Crosswind Concepts, is Anthony S., who is 8 years old. In the picture, he is holding a turtle that he discovered while on a hike with his family. This is a wonderful opportunity made possible by the Freedom Chair because Anthony’s parents were told he would never walk, talk or sit. He has also recently joined Cub Scouts and continues to grow and enjoy the world around him. www.crosswindconcepts.com NOV/DEC 2014

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about our cover...

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

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

GeoSafari Pocket Scope from Ableplay

Insta-Snow from Ableplay

Schoenhut’s Band in a Box from Ableplay

My First Career Gear costumes from Ableplay

Courtney Barnum sent in this cute picture of her and her son, Liam, who is 8 years old. Liam has autism, BPD, ADHD and OCD, among other diagnoses. He is a fun loving young boy who loves playing board games and Minecraft with his mom, Courtney; dad, Patrick and older brother, Branden. He also considers his dog and cat to be his “fur sisters”. When he grows up, he wants to be either a comic book collector or a Salt-water Cowboy!

Cover Image Courtesy: P. Barnum

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

Facebook.com/ Parenting Special Needs Magazine

Parenting Special Needs.org/ subscribe

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A real threat to your child & strategies for preventing it by Douglas Haddad, Ph.D.

ullying is a real issue that continues to expand and morph into many different forms, affecting today’s youth. The million-dollar question still remains, “What should be the focus to win the war against bullying and stop it dead in its tracks”? First, we must identify what bullying is and identify the parties involved, and then ﬁgure out appropriate strategies to remedy these issues. According to Stopbullying.gov, bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. Bullying behaviors happen more than once or have the potential to happen repetitively and have a profound negative impact on a child’s psyche and overall well-being in school. It oftentimes prevents a child from participating in a social activity that may have been otherwise enjoyable. Many children develop a “school-avoidance” as a result of bullying and develop psychosomatic symptoms of sickness from a stressful state of mind that is always contemplating ways to avoid being bullied. Parents Par rents an aand d eeducators ducators struggle stru ugglee to t un understand ndeerssta tand nd d wh why hy ce hy certain erta taain n kkids id ds bully bu bu othe hers. Iss iitt that her th hatt th hey’vve he ve be een bullied ee others. they’ve been th hem emse s lv se lvess and and d they the theey ha avee a low themselves have self-esteem self se lf-e -eest stee eem m and and want want tto o fe ffeel e some sense power sensse of control con o trol orr po p wee in their the lives? Are they not getting gett t attention they long fo for and seek it out negatively? Ultimately, from my experience working with expe peri pe rience workin ri variety children iin n a va vari ri of capacities and an of of diff fffer eren entt ag ages es for over es different 15 years, bullying bu behaviors b h i lie in a behavi longing long to feel accepted, a c ac

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valued, and important in some way shape or form. The most successful approach for winning the war against bullying is to not ﬁght at all, but rather shift the focus to a “Pro-Acceptance” model and teach youth about not only accepting others for who they are, but also taking it a step further to embrace and celebrate their unique differences.

What are the most common forms we see happening today among youth? Despite many bullying intervention programs in schools, bullying continues to take place nowadays and seems to take on additional forms than the typical big bad bully picking on the other kids. Of course, the more easily identifiable physical bullying still exists. A child gets shoved into his locker, assaulted on the bus, or pushed down a flight of stairs. However, the forms of bullying that educators should be keenly on the lookout for at school, which oftentimes go unnoticed and unreported for longer periods of time, include verbal bullying and relationship bullying. Groups of kids work to damage a child’s reputation by embarrassing them in public, spreading rumors to hurt their social status, or isolate a child to ruin their relationships with other peers. It could be intentionally choosing to exclude a child from the lunch table, or not being a partner with another student in an activity. In PE class, a child may always be chosen last for a team. In sports, a child is rarely, if ever, passed the ball. Kids nowadays are immersed into the cyber world, and they face the threat of being the recipient of nasty text messages, pictures, videos, being sent about them. The ramifications can result in some serious negative effects on victims, such as lowered self-esteem, increased depression, and tragically suicide if not promptly addressed.

Are there any strategies that a child can use if he/she is confronted with a bully (or groups of bullies)?

advice real life All students should realize that behave. By treating a child and others with bullying nowadays is punishable by law respect, acceptance, and understanding, and is a crime. They should know that that will leave a strong mark and hopefully impregnate some lasting values and their actions on social media including morals, which are ultimately the most texting are permanently recorded and effective ways to influence a child to could have a negative impact on their become a leader and a person of strong future if things are inappropriately stated. character. It is important for parents and teachers • I really like the idea of having an to teach a child to be assertive in two anonymous “bully box” where students can situations: One, if someone is bullying - Dr. Douglas Haddad discreetly express their concerns so adults that child and two, if a child is a bystander (Author and Educator) become more vigilant as to the dynamics and witnesses someone else getting of certain students and can better teach bullied. those bullied effective strategies for stand It is important for children to be up to bullies once and for all. told to stand up for someone who is • Each school should reward students for demonstrating bullied. Otherwise, they are doing just as much harm the pillars of good character and “being caught doing allowing the bullying behavior to perpetuate. The statistics something good for someone else.” are staggering. 95% of teen social media users who have witnessed cruel behavior on social media sites indicate that For more information check out Dr. Doug’s official website below.w they have seen others ignore this mean behavior.

“ The answer to stop bully ing lies in the accep tance of others.”

Dr. Doug’s Solutions Toward “ Pro-Acceptance”

• Ultimately, it is up to adults to demonstrate positive behavior and be role models for how they wish a child to

Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids… Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields. www.douglashaddad.com

12-31-14

How To

Private Duty Nursing What is it? Why you need it? And how to get it by Tracy Felix

am a mom of a special needs child that is medically complex. For the first 2 years of his life, my husband and I did everything for him. We now, finally, have help. So how did we finally get help? What kind of help did we get? And how do you get help? Sadly, if your child has 40 medications, but they are all on a schedule, you will not qualify. Just because you are feeling overwhelmed, you will not qualify. If your child seems to be going backwards because you just can’t do it all, you will not qualify. I have felt, and still do feel, all of your pain. I was telling everyone I could for 2 years about our daily struggles. I cried to everyone. I told our doctors, case managers, and therapists. It seemed as though no one was really listening. We were told our son was “not bad enough” to get any kind of help. We didn’t even get respite care. We had to do it all the time …everyday … and every night. The thing that changed everything, you ask? I finally cried to the right person. Our son was ready to add more therapy… one…more…therapy. He was

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ready. It was time. But it was going to be one more thing that I would feel guilty about if it didn’t get done; one more person coming into our home; one more thing that I didn’t know if I could do. I cried to that therapist the ﬁrst time that we met. I am not sure if she thought I was crazy, or if she felt sorry for me, but either way, she got the ball rolling to get us help. Our son is also on a bi-pap machine at night and occasionally stops breathing. He is really quiet and quick about it. Even with monitors on him, I can’t get to him fast enough. It helps to have someone awake while he is sleeping in order to get him breathing again.

What is private duty nursing?

They can be from an agency or independent contractors. All of ours are independent (NIP/ Nurse in Independent Practice contracted with Wisconsin Medicaid). Our nurses pay for their own insurance and taxes. They get a National Provider Identifier number and apply to be an NIP through the state Medicaid program allowing them to bill the state for the time they work. They also have to keep a HIPAAcompliant file on our son, at their home, for 7 years that the state can audit. They can work more than one case and make their own schedule. We currently have 3 full time people that are only working our case and 3 fill-ins that pick up a few hours a month. The full timers are each in our home for 10-12 hours a day and work, on average, 5 days a week. PDN hours are based on medical need and caregiver availability. The maximum number of hours for children is 20 hours per day

Private Duty Nursing (PDN) is comprised of nurses, either a Registered Nurse (RN) or a Licensed Practitioner Nurse (LPN), who want to work as a nurse but prefer the one-to-one hands-on So, what is it REALLY like to have nurses care they can provide in in your home? click here to read more >> the home environment.

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advice real life and for adults it is 24 hours per day, 7 days per week in Wisconsin (there are always exceptions to every rule). They come into our home for a maximum of 20 hours a day and help with therapies, perform all skilled nursing procedures and treatments, personal cares, and everyday basic needs that our child has. They can come to doctor appointments, outings to the store, and ours have even gone with us on vacation. They are there to help you keep track of everything and keep your child on a regular schedule. They are also there to give medication and help coordinate care with the doctors.

Why do you need this? s $OES YOUR CHILD NEED ANY OXYGEN s $OES YOUR CHILD NEED ANY INTERVENTION CARE (Ours child would aspirate and turn blue if not suctioned out) s $OES YOUR CHILD HAVE MEDICATIONS THAT NEED TO BE given only in certain situations (i.e., seizures, or pain)? s (AS YOUR CHILD BEEN IN THE HOSPITAL FOR UNPLANNED medical reasons? s )S YOUR CHILD ON A VENTILATOR

s$OES YOUR CHILD HAVE RESPIRATORY ISSUES s$OES YOUR CHILD HAVE A FEEDING TUBE THAT REQUIRES venting regularly? s $OES YOUR CHILD HAVE A TRACHEOSTOMY TO HELP THEM breathe? s $O THEY NEED SOMEONE TO ASSESS ANY SITUATION ON any given day? s $O THEY HAVE SEIZURES THAT ARE NOT CONTROLLED BY medication and have several every week? s $O THEY HAVE A CATHETER OR AUTONOMIC DYSREmEXIA (when the bladder is full their blood pressure rises)? If you said YES to any one of these you may be able to get private duty nursing. Your child needs to have some kind of situation, in their daily life, which needs to be assessed by a skilled nurse, in order to qualify. You will need to contact a social worker in your area to see if you qualify. We used our local clinic’s case manager to ﬁnd out more and help ﬁll out the paperwork. Y Tracy Felix Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her at www.xlinked1.blogspot.com and www. facebook.com/xlinked1

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STORY CONTEST

TOP 5 Runner-up Prizes

Caregiver

TOP 3 Story Winner Prizes

14th Annual

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“Alfred survived his early birth. Each year, more than a million babies don’t. Support World Prematurity Day on November 17.” – Anne Geddes

Photo by Anne Geddes ©

RealM

Jennifer Schwertfeger

“Grace: a powerful lesson in resilience”...

share Life’s lessons

ennifer Schwertfeger is a special mother who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter Grace who was born at 24 weeks a micropremmie. We asked her a series of questions; some serious and some “just for fun”. See what she said...

Photos courtesy Michael Schwertfeger www.limerockphotography.com

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PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family. Jennifer Schwertfeger: I live in Mankato, Minnesota, with my husband (who is a professional photographer) and three daughters: Autumn, Grace and Faith. PSN: Tell us a little bit more about your child’s condition and diagnosis. JS: Grace, 10, was born a micro preemie at 24 weeks, and has faced many medical surgeries. One of her biggest issues is chronic lung disease which has been the genesis of her other medical complications. When Grace finally came home (after 9 months in the NICU), she needed a lot of medical support like mechanical ventilation, tracheostomy, oxygen and a feeding tube. We had nurses in our home around the clock. In fact, the first 4 years, in general, were very critical. When Grace was about 18 months old, we removed her tracheostomy. But, on the day that we initially scheduled it, the doctors noticed a cyst that would need to be removed first. There are always setbacks, but we overcome them. When she became more mobile, I started noticing some behavior and developmental delays. She would not listen to me, and I found myself repeating things to her over and over again. She was also destructive with toys and things that she played with. In addition, she had impulses and behavior issues that I knew were a part of being born a preemie. Grace needs lots of guidance and reminders throughout her day, both at home and at school. She is doing well, and has made some incredible progress. Through it all, we were able to put our faith in our Lord, and learn how to take it one day at time. PSN: You’ve written a book about your experience raising a premature baby entitled “Life with Grace”, can you share a brief overview? JS: “Life with Grace” is a heartfelt memoir and helpful resource for families struggling to navigate the NICU experience. The topics include: the beginning of my high-risk pregnancy; Grace’s birth; living in the NICU/PICU; navigating the NICU; life in the hospital; bringing Grace home for the first time, etc... It also

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The girls and I outside playing with the Fall leaves 2014.

includes starting early intervention and her IEP plan at school as well as the dynamics of raising a child with special needs. PSN: You have shared many experiences and lessons learned in your book, and I must say that I learned a lot from your book. I especially like how you point out what you learned after each chapter. What is the biggest lesson you want to share with others? JS: Over the past 10 years, it has been that I couldn’t magically make things better, or change how difﬁcult my life was then! But, what I could do was ﬁgure out a way to take my own experiences and learn from each one, in the hopes of helping others. And that’s just what I did; I wrote the book, “Life with Grace”. There is hope today and so much more support offered to families in need. It was my goal to help foster and mission to as many families as I could. Photos courtesy Michael Schwertfeger www.limerockphotography.com

PSN: Many premature babies, unfortunately, have a variety of special needs. Since much of Grace’s early years were focused on health issues, how has she developed? What has early intervention, therapies, preschool or school been like for your daughter? JS: I will focus on early intervention. By the time Grace entered grade school, she was diagnosed with Cognitive Developmental Delays as well as other medical issues. I could see after Grace became more mobile that she had some delays, but I ﬁgured she needed lots of time with repetition in order to learn things. She had been sick for so long that her body never had the proper time to grow and be a toddler. The Early Intervention Specialists came to our home and eventually began working with her at school to help give her some muchneeded one on one time. She started to catch up in her speech and physical therapy skills, but her ﬁne motor and cognitive abilities were behind the most. She has made some incredible progress with lots of hard work. Grace learns from positive reinforcement and she gets upset if she doesn’t do something right, even though sometimes she will tell me that her brain told her to do that! :)

JS: It was overwhelming caring for all of Grace’s medical needs, and this became a full time job for me. I had to overcome so many fears and start believing that I could handle all this stress. I also had to overcome the fact that my child had special needs. I kept thinking, “she would just catch up and be like every other kid out there”. But, personally and intellectually, I knew I had to be thankful for all that she could do! I began to be grateful for all the abilities that she did have. I began to ﬁgure out the things that made me feel proud to be her mom. I also was worried about how to manage all three of my kids. When one child has special needs, how can I make sure that each child is getting enough attention? In the end, it all works out. We can only do so much in a given day. As my husband would say, “I did more than most”. I love him for that. PSN: What have been some of your biggest obstacles/challenges raising your child? JS: In a word: time. My husband and I try hard to

PSN: Can you share with us something YOU, personally, had to overcome by being a mother to a premature baby?

Grace in NICU at six weeks old

“Fall of 2013, Grace is 9 years old, having a fun moment with her mom”. Grace is six weeks old at Saint Mary’s NICU Hospital in Rochester, MN. NOV/DEC 2014

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make an effort at spending time as a family, so we can create great memories and get away from the everyday “living of the same routine”. I know my two other daughters understand that Grace has special needs, but I don’t ever want them to feel like they can’t be a kid, or have to worry about all of Grace’s needs. That’s part of MY job. PSN: You reference in the book that when Grace was born she was no bigger that a dollar bill … WOW that visual struck a chord in me. You all have come so far…what do you want most now for Grace? JS: My hope is that Grace will keep learning, growing and just trying. I am thankful that she can do some “self cares” herself; that alone is a blessing and it took many years to get her to this point. I dream of the day that she could be more independent, and do some things on her own, but at this point in her life, it is too early to tell. I know that she has daily struggles, but I want her to know how much she is loved. She is a miracle to so many. PSN: What do you know now that you wished you had known earlier? JS: When Grace had her tracheostomy, I was completely afraid that she might have it for the rest of her life. I could see her ﬁghting with every breath. I felt defeated as a mom. I just wished that I had been able to realize that I needed to accept things and know that the future was going to be good. You have the right to be afraid, and it’s important to express those feelings to others! Do you have a proud moment about your child that you would like to share? JS: The summer before Grace entered 2nd grade, I had (ﬁnally) begun to notice that she was progressing; she was starting to listen to me. I knew this was a miracle all over again. It took years of working with her one on one, but what an AWESOME, proud feeling it was. Y PSN: Jennifer, thank you so much for sharing your experiences and for inspiring us with the lessons you have learned raising Grace.

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NOV/DEC 2014

fun

Just for about Jennifer What do you do to ﬁnd time for you? I love to write. But, I also like the simple things: spending time with family, going out for a nice, relaxing meal, watching my favorite shows on television with a good cup of coffee. Mommy timeout: Dream vacation? I haven’t been on any vacations for years, so, I guess it’s just being happy with the moment that I have right now! Favorite Quote? My mom used to say,

“just give it more time”. The world needs…? To put all the people in the world together who want to make a difference, and let them do just that. My job is? I am a wife, mom, sister, daughter, and an author, too! Favorite wacky word or phrase? When Grace was younger, she would do things the same way (over and over) and would always say “I did it”... but she would never know “why” she did it.

You can learn more about her book, “Life with Grace”, by visiting her website: www.lifewithgracebook. com (you can also order a copy through this website). You can follow her story on her Facebook page: www.facebook.com/ lifewithgracebook. If you have further questions, email her at: info@ lifewithgracebook.com

Photos courtesy Michael Schwertfeger www.limerockphotography.com

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

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Support Different-Ability Awareness

How do you create or maintain and during the holidays?

joy

peace

Parenting Special Needs readers shared with us on Facebook how they create peace and joy in their lives during the holidays. Judy H.

Reduce Expectations Michelle W. Reduce expectations. Provide a quiet zone to escape from chaos and confusion.

Denise B. One thing we started a while back was giving our children memories instead of presents. We go on vacation during the school break. After the first year they loved it! Instead of iPods that are broken by March, they get a family vacation and tons of memories! It also saved us from a bit of the unwanted drama of certain family members! Bonus!

Jessica G. Visual schedule for the holiday including favorite activities!

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NOV/DEC 2014

We stopped doing large parties. We have a nice holiday routine. If there is any variation to our routine we discuss it with our children so they know what to expect. If we chose to attend a larger party, we have an exit plan that involves us taking two cars. If my son has had enough, one of us leaves and takes him home and the other one stays and enjoys the party more with our other children. We also establish, before the party or event, which parent is leaving and my son knows he can just say he wants to go home. Sometimes he’s too overwhelmed. In those cases, we prompt him to leave and he’s usually happy to leave the chaos. We call it “divide and conquer”. It’s the only way we have been able to enjoy life while living with Autism.

advice real life Renee P.

Assign Roles Cheryl R. My son and I have friends over for dinner. My son uses his step-by-step button with the Thanksgiving prayer or blessing pre-recorded and he is in charge of the blessing.

I plan all year using organized christmas.com. My being calm keeps the household calm. Kids love the traditions.

Sharon M. Don’t over load your child, or yourself. If you are hosting at your home, delegate some of the tasks. This not only makes more time for you to deal with unexpected issues with your child, but also takes some stress from you as well.

Music Heals Julie A. C. We try to not overbook: one event per day. We try to set them up for success. with as much fruits and veggies as we can leading up to wherever we are going because, invariably, they ﬁnd sweets at a party. And we don’t stay out late at a party with the kids. At home during the season we have a dance party with Christmas music and let off steam and exercise.

Let off Steam

Elizabeth F. I play Christmas music a lot. Music stimulates all areas of the brain, and is very healing when it is loving, balanced and harmonious. All of the Christmas songs that we listen to year after year bring back the good memories and feelings we had the previous years. I also make sure that I have small and simple musical instruments in the car and in the home. This way, at anytime, we are able to joyfully participate with the holiday music. This is our tradition, and it does not involve too much food, sugar cookies, or too many toys. Just expressing the essence of the spirit of the Season through listening and celebrating happy sounds.

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Yolanda D. Just relax. It happens every year. Before you start anything you know will be stressful, take a few nice deep breaths and remind yourself you can get through it. Make a list of what you need to do and start checking things off when you concur them. Less is more, unless it’s food and you’re feeding an army. Good food, good company, and WiFi or Netﬂix helps my autistic son stay happy. He loves the holidays and he helps decorate. I think his favorite thing is the lights. He will plug them in and then I see him get excited; he knows Santa will be coming soon. He is also a big fan of the Polar Express. I know it’s hard with an autistic child to go out and about. Sometimes you feel like a prisoner in your own home. We treat our son as normal as possible so it’s easier to blend in then stand out. It’s hard when you go to Walmart and your kids don’t get what they want. It creates a big scene when they have a melt down. I don’t enjoy everyone staring at my family...it’s not like they have never heard a kid cry. Teaching my son the ways of the world is hard, but I want him to enjoy this big world and not hide him from it. Headphones are amazing for my son. Keep calm and carry on. Holidays are meant for good times. Everything is easier said than done. Happy Holidays to all. Make sure you’re always spreading joy, love and understanding.

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your life balance

With Your Special Needs Child by Deanna Picon

he decorations are perfect, the presents look magical, and the entire family is smiling and relaxed. That’s how the holidays are portrayed in media and advertising, but it’s not the reality for families with special needs children. The holidays often become trials for parents like us, marred by guilt, resentment and stress.They are something to “survive” or “manage”, with little enjoyment expected. However, it doesn’t have to be that way. With planning, realistic expectations and a positive attitude, you can reduce holiday stress and actually enjoy this time with your family. You may feel sad, depressed or even jealous of others during the holidays. There may be times when you secretly wish your child was “normal” and could participate in regular holiday events and activities. The first thing to remember is that these kinds of thoughts and feelings are perfectly normal. You didn’t plan on having a child with special needs. Nobody does. So, it doesn’t make you a bad person or a bad parent – it just means that you’re human. And you’re certainly not alone; the holiday blues are a common problem. Many people hit by the extra financial and time stress, physical fatigue and family pressures feel depressed at this time of the year. Add in the extra responsibilities facing a family with a special needs child – is it any wonder you might be feeling down? But, don’t forget, there is always somebody worse off than you. Remember your blessings and remember who you are. It’s very easy to allow the all-encompassing challenge of a special needs child to define you and the rest of your life. Like any parent, much of your life is centered on your child or children, but you’re still the same person inside. If anything, you are an even stronger and better person for having stepped up to the challenges of life with a special child. Your friends and family don’t like or love you less. In fact, they probably admire and respect you more than ever after seeing how difficult it can be to raise a child with a disability. Don’t shut these people out of your life, and don’t shut yourself in. Reach out and you’ll find many hands waiting to take yours, particularly around the holidays. There’s no shame in accepting empathy and extra support.

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Not only can it help you enjoy the holidays more, but also letting others assist you will make them feel good and allow them to live out the true holiday spirit. Nobody loses and everybody wins. So, when family and good friends ask you what they should get you for a holiday gift, do yourself a huge favor and ask for a few hours of “me time” to refresh and recharge yourself. Many people have time off from work and are full of the giving spirit, making this the perfect time of year to request that personal break. Go to a party. Go to a game or shop with friends. Go on a “date” with your partner and talk about something other than the children! After all, the idea is to enjoy the holidays. Some people seem to think that having a child with special needs means you must always be overwhelmed and sad. It’s bad enough when other people try to impose that thinking on you, but it’s even worse when you do it to yourself and start feeling guilty for having a good time over the holidays. Actually, a bit of enjoyment is good for you and, believe it or not, good for your child! In any family, parents who take care of themselves – physically and emotionally – are better able to take care of their children. So, don’t go where you will feel uncomfortable; go where you and your family will be accepted and have a nice time. All parents have the right to decide what holiday events to attend or host based on their family’s needs, regardless of what relatives, friends, neighbors or anyone else thinks. If nobody else gets it, pat yourself on the back anyway. Day in and day out, you are taking care of your child, meeting their daily and personal needs with care and love. You deserve a medal for the heroic things you do on a daily basis. Nobody’s perfect, but you’re pretty great! So, ring out the old year and bring in the new one on a positive note. Raise a glass of bubbly (or, just as likely, ginger ale!) and make a toast to your family – “Our best times are still ahead!”Y Deanna Picon is founder of Your Autism Coach, LLC (www.YourAutismCoach.com), author of The Autism Parents’ Guide To Reclaiming Your Life and a parent of a non-verbal, young man with autism.

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Improving Transitions by Meme Hieneman, John Hoch, & Tahra Cessna

When it’s Time to Change, You’ve Got to Rearrange

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NOV/DEC 2014

Photos courtesy our Facebook Friends

You can use these steps and questions to guide you in a problem solving process that may make transitions easier: 1.Gather as much informa-

3. Figure out what your child 5. Reward small successes.

tion as possible about the upcoming change s 3ETTING what materials will available and how does the place look? s 3CHEDULE What activities and routines occur and how long do they take? s 0EOPLE: Who will be there? How will they interact with your child?

will need to learn to succeed s 4RANSITIONING How will your child enter and exit the setting? s 0ARTICIPATING: What will he or she need to do in the activities? s #OMMUNICATING: How can your child express his or her needs?

2. Create adjustments that

and skills to your child s 3AY Can you explain in phrases or simple words? s 0LAY Will your child role-play or watch demonstrations? s 3HOW Would it be helpful to show pictures or videos? s $O How about practicing the steps of activities?

could be made to ease the change

s #ONTROL What will your child be able to choose or control? s &AMILIARITY Can you bring familiar items or activities to the new setting? s 0REVIEWS Can you visit or share pictures/video of the new situation? s %XIT STRATEGY Can you plan a break or leave early when needed?

4. Teach new expectations

s 7HAT What activities or items does your child particularly enjoy? s (OW can you embed rewards in natural routines of the setting? By gathering information regarding upcoming changes, making adjustments ahead of time, communicating expectations in a language your child can understand, and teaching skills that allow for your child to cope, your child can handle changes better.To reword the Brady Bunch song:

BEFORE it is time to change, YOU have to rearrange (the environment)

NOV/DEC 2014

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A New School for Rebecca W

alking out of Rebecca’s IEP meeting, Deanna was both overjoyed and ﬁlled with dread. Her daughter was being transferred to a new, inclusive, state-of-the art middle school instead of the feeder school she had anticipated. At 12 years-old, Rebecca had always participated in classrooms with a single teacher and assistant. She would now be switching classes (to include those with children without disabilities), facing a more challenging curriculum, and having to negotiate the bus circle, large lunchroom, and lockers. Rebecca was a bright girl, but she did not like change. Deanna decided to do some detective work before addressing the changes with Rebecca. She talked with Rebecca’s current teacher about aspects of the

change she thought would be challenging and then worked with the school psychologist to arrange a visit to the new school while classes were in progress. She even made a call to transportation to get the ‘low-down’ on the bus. With this information, Deanna sketched out a map of the school and created a social story about how Rebecca would meet the bus, arrive at school, use her locker, move between classes, have lunch, and make it home safe and sound. Over the summer, they practiced opening and closing a combination lock and moving through crowds when they shopped at the mall on busy days. As the beginning of school got closer, Deanna arranged a meeting with the guidance counselor at Rebecca’s new school. The counselor, Rebecca, and Deanna talked about what would be expected in each of her classes, what areas might be difﬁcult for Rebecca, and what supports could be offered (all of which would be communicated to the teachers). They walked

-EME (IENEMAN has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.

PARENTING SPECIAL NEEDS.ORG

NOV/DEC 2012

around campus until Rebecca got her bearings. The counselor agreed to assign Rebecca a buddy from a higher grade-level to help her through her first day. Rebecca and Deanna attended the open house to meet each of the teachers. During that open house, they learned Rebecca would be allowed to use her favorite drawing program when she finished assignments. After both the tour and open house, Deanna took Rebecca out for her favorite ice cream, praising Rebecca’s courage. On Rebecca’s first day of school, Deanna walked her to the bus and introduced her to her driver. She made sure Rebecca found a neighbor with whom to sit, and gave her some grapes to snack on during the ride. Rebecca’s buddy met her at school and helped her through the day. Rebecca had no problem with the locker, but needed support finding her way around the lunchroom. The teachers were very understanding because they had been apprised of Rebecca’s needs and possible difficulties. Rebecca was allowed to ask for breaks up to twice per class period by signaling her teacher; she got drinks and walked once around the halls on these breaks. Deanna came to meet Rebecca in the cafeteria on the first day, but quickly realized that she preferred to hang out with her new friends. Rebecca’s transition was not seamless, but was much better than Deanna originally expected. expected.

From Mom to Dad, and Back Again

Helping your child thrive and Ă&#x20AC;RXULVK

s Katy ďŹ nished kissing her two children to rush off to her night job as a server in a restaurant, Jimmy begins hitting the side of his head and crying. â&#x20AC;&#x153;Mommy will be home soonâ&#x20AC;?, Katy says and motions to her husband to take over. â&#x20AC;&#x153;This happens every time you leave,â&#x20AC;? Matt says with frustration. Although they cannot resolve the problem that minute, both parents agree to talk it over in the morning. When Katy and Matt really examine the situation closely, they ďŹ gure out a few things. First, Jimmy does not know when to expect these transitions and how they ďŹ t into the activities of the day. Second, they are both, typically, rushing around, meaning that it is hard to attend to Jimmyâ&#x20AC;&#x2122;s needs during transitions. Third, because of the current schedule, Matt tends to have to supervise Jimmyâ&#x20AC;&#x2122;s less favorite activities (e.g., picking up his things, bathing, brushing his teeth, and going to bed), whereas Katy helps him do his academics â&#x20AC;&#x201C; which he enjoys â&#x20AC;&#x201C; and supervises play time while preparing a meal for the family. Finally, they discover that their expectations for Jimmyâ&#x20AC;&#x2122;s behavior are different: Matt tolerates behavior that Katy does not; and Katy states expectations more clearly than Matt. With this information, Katy and Matt commit to some changes. They re-evaluate their schedule to balance their responsibilities for activities. Katy agrees to get Jimmy to pick up his toys and school supplies each day and take over bedtime routines when she is not working. Matt plans fun activities to do with the kids in the early evening. They create a picture schedule of these activities with pictures of themselves to show Jimmy who will be with him and when. They warn him of these upcoming changes, referring to the schedule and create a good-bye/hello ritual that is fun. Matt and Katy sit down and make a list of their expectations for their childrenâ&#x20AC;&#x2122;s behavior and how they will respond to encourage positive behavior and discourage misbehavior â&#x20AC;&#x201C; consistently. They promise to communicate these expectations. With these changes, Jimmy learns to handle the transition between his parents much better. Y

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We Share! NOV/DEC 2014

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Mommyâ&#x20AC;&#x2122;s Timeout : T ake a time out and use V isualization Meditation to relax. Imagine yourself here along this majestic drive with the beautiful blue sky and snow covered trees. Feel the cool crisp air on your face. Take a couple of deep breaths and begin to let go of any stress. Jenison, Michigan, United States Photos courtesy of ÂŠ Rachel Kramer/flicker.com Music courtesy Ryan Judd www.TheRhythmTree.com

breathing space your life

Family

Image: Roberta, (on the left), the boys and my twin sister (who co-adopted the boys with me last year) Christine Angel.

WHERE LIFE BEGINS & LOVE NEVER ENDS by Roberta M. Lincoln

knew I wanted to be a parent my whole life. In my mid-30â&#x20AC;&#x2122;s, I realized it wasnâ&#x20AC;&#x2122;t going to happen â&#x20AC;&#x153;naturallyâ&#x20AC;?. Once I decided to adopt, I waited 3 Â˝ years as a single mom to adopt through the state/ foster care system. During that waiting period, I took any/every class I could ďŹ nd and read every book suggested about caring for special needs children. After that long wait, a representative for the state foster/adoption program told me that there was not a very good chance for me to adopt

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as a single parent â&#x20AC;&#x201C; because the level of needs for kiddos adopted through the state programs was SO great, they believed twoparent families were the best ďŹ t for their kids. Of course I was devastated. I felt I had wasted 3 Â˝ years of my life waiting for something that was never going to happen. However, that truth opened the door for me to realize I should pursue an open adoption through a local, private adoption agency. And, because of the multitude of training I

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had received to prepare for a special-needs child, I was quickly selected by a birth mom to adopt her baby. The birth mom was a developmentally delayed special needs young adult, so the agency knew her baby would most likely have special needs, too. Within two weeks of meeting the birth mom (who we refer to as a â&#x20AC;&#x153;tummy mommyâ&#x20AC;?), my son was born via emergency C-section, 6 weeks early. Welcome Gabriel! He had a very rough start. His cord wrapped around his neck twice; he had to be resuscitated

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We believe that there are no unwanted children… just unfound families ~National Adoption Center

and he spent several days in the NICU. Gabriel stopped breathing a few times in the first week after arriving home, and has suffered seizures since birth. He developed life-threatening food allergies at 6-months old following an anaphylactic reaction to baby formula. Gabriel was diagnosed with a Sensory Processing Disorder and “likely” ADHD at age two. We also suspected Asperger’s or high functioning autism (though we are still awaiting a definite diagnosis). Gabriel has definite behavioral, emotional, social and learning delays, and has received services through the local Educational Services District (ESD). He was placed on an IFSP and it transferred to an IEP when he started kindergarten. Gabriel received occupational therapy for several years, and continues to receive hippotherapy. Just prior to Gabriel entering kindergarten, we were approached by ‘a friendof-a-friend’ in the community who asked if we would be interested in adopting again. The family disclosed that the baby was exposed to drugs and alcohol throughout the pregnancy, so delays should be

expected. We agreed to an open adoption through an adoption attorney. Welcome Samuel! Thankfully, Samuel’s entry into this world was much less medically-challenging. Samuel has been diagnosed with global developmental delays and is receiving services from

THINGS TO CONSIDER WHEN ADOPTING CHILDREN WITH SPECIAL NEEDS

2 3

Determine what kind of Are you involved with special need you could a religious or other be comfortable with: physical community group that can disability; emotional chaloffer support? lenge; sibling group, etc… How well is your lifestyle suited to a child with Is your home able to accommodate a child special needs? Are you and/ or your partner working with physical limitations? outside the home? What How much patience kind of ﬂexibility do you have do you have? Do you at work? recognize that feedback from the child/ren may be slow in Are you prepared to seek coming? and use the services you will need? Psychotherapy? Are you prepared to Special education services? recognize that the child you are adopting has a past How supportive is your that you have to consider as adoption agency? Will it you are parenting him/her? direct you to the services you may need? Have you discussed the Are you open to prospective adoption with your partner, your children, connecting with a parent group or other parents your extended family? Are they comfortable with the of children with special adoption and prepared to be needs? supportive?

4 5

There is no “ideal” parent. Many kinds of people can successfully parent a child with special needs. We welcome single people, members of the LGBT community and those who themselves have a disability. The most important attributes of prospective parents include the ability to love, to have a capacity for patience and to see the potential in every child. We believe that there are no unwanted children…just unfound families. Since 1972, the National Adoption Center has created families for more than 23,000 children. For more information visit www.adopt.org

the local ESD, as well as physical therapist for problems with his walking. Gabriel has been attending a Special Education program for kiddos like him through our local public school programs, and has recently transitioned into ﬁrst grade. Samuel is attending a daycare program where he receives a lot of stimulation and interacts with peers, which has greatly aided in his development. It has been quite challenging over these past six years! Would I change it? NOT A CHANCE! I never realized how MUCH love I could have for such tiny beings! My sons are a joy to be around, and every day is a fantastic new adventure! Special needs kiddos take A LOT OF TIME and PATIENCE. While I work full time, my work schedule has afforded me the ﬂexibility to make the myriad doctor and therapy appointments that my sons both require. I was always told “God will Bless you with the RIGHT child for you”. Even though the initial waiting period was SO hard, that has long since been forgotten. I am ever grateful and blessed to be a mom of two fantastically wonderful special needs kiddos!

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Gift

The

OF A LIMB by Cynthia Carr Falardeau

Image courtesy Photoxpress.com

Preparing to Receive a Gift:

January 16, 2003 was possibly the darkest day of my life. The sight of our son, Wyatt’s, black and lifeless limb was incomprehensible. Just the week before doctors had tried to restore blood ﬂow to his right forearm and hand. Amputation was not an option – it was essential. Doctors feared further infection and loss of our 3 pound baby’s life.

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hat cold and windy Thursday was HandCraftEdASL more than I could bear. As they began to roll Wyatt into surgery, the doctor paused, “Mrs. Falardeau, we will do everything we can to save his elbow.” The words stung my heart. Why couldn’t they save his arm? What good was an elbow? I wanted to scream, but instead, I collapsed into my husband’s arms. Later that day, I was admitted to a neighboring hospital for fever, infection, and exhaustion. Part of me died that day. A hope for a “normal life” for our son also withered away. It would be 11 years later until I would fully My emotions surprised me. I didn’t want to open appreciate the doctors’ efforts. that wound. I had made peace with my son’s I mourned that limb for years. In time I accepted difference. He was adaptive and had a great level of our son’s difference. We tried several prosthetics. self-acceptance. Why did he need a robot arm? Eventually, Wyatt’s greatest joy was pulling it off. At A long pause created an awkward moment. Finally, the age of 2 ½ he loved shocking old ladies in the Trudie said,“will you please promise me that you grocery check-out line. Despite his lack of verbal will at least show Wyatt the video link”? I managed communication, he would roar with laughter when a weak,“yes”, and hung up. kindly on-lookers gasped, as he waved or threw the When I arrived home I told showed my husband, rubber arm in the air. Jim, the link. He, too, scoffed,“Wyatt doesn’t need that”! Our son entered the room as we both said in unison,“He is just FINE”! Wyatt saw the halted video frame and asked,“What is this”? Like a typical, tween-age, digital native, he Like many parents of children with special needs, clicked the link without hesitation. Paralyzed by my we are guarded when a news story comes out and own emotions - I froze. What was I afraid of? For promises a cure or a solution. The story of Alex years family and friends had prayed for a hand and Pring, a 6 year old Central Florida boy, who received an arm for our son. Shouldn’t I be celebrating? a 3-D printed hand and arm designed by students Wyatt was riveted. He yelled,“Mom! Dad! I want from the University of Florida, prompted a dear one of these robot arms! That is super cool! How friend to call. Her words were full of hope. do I get one? I could ride a bike! I might even be I thanked my friend, Trudie, for sharing. She able to paddle a kayak”! detected the lack of sincerity in my voice. However, Suddenly, I realized my fears were selﬁsh. I needed she pressed on,“Alex was able to give his Mom a to ﬁnd a way to allow Wyatt a chance to make his proper hug”! I defensively responded,“Wyatt is a own decision. great hugger!”

Wyatt’s Video >

A Friendship Plants the Seeds of Hope:

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designers, parents, families, artists, students, teachers and people who just want to make a difference.The mission of E-Nabling is to bring these volunteers together to create, innovate, re-design and give a “helping hand” to those that need it.

One E-mail brings the gift of Hope: E-Nabling the Future – Anticipation of a Gift: Like any well informed Mama Bear, I turned to my favorite source of information, Facebook. I posted a question to my closest 500+ friends. I quickly learned that the volunteer-driven, non-proﬁt, E-Nabling the Future, was sharing design plans and resources - . http://enablingthefuture.org/about/ It started out as two guys: a prop maker from the USA and a carpenter from South Africa trying to help out one child. They came together from 10,000 miles apart to create a prosthetic hand device for a small child. Inspired to make a difference, they gave the plans away for free. This way anyone in need of a device could make them for themselves, or have someone make it for them. The two original volunteers have started a world-wide movement and have been joined by other “tinkerers”, engineers, 3D print enthusiasts, occupational therapists, university professors,

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The same night Wyatt asked me to get him a “robot arm”, I got a reply from an E-Nabling volunteer named Melina. She provided me the forms and instructions. The next day we set to work measuring and taking photos. We sent the information off and within a day we had a reply with questions.

Celebrating the Elbow: We were asked about the movement of Wyatt’s elbow stub: how much movement did he have; could we create a video? Like a one-take wonder, Wyatt, heart-fully explained how he could hold many things with his alternative limb called,“Armie”. He lifted a basketball to demonstrate his strength and range. It was at the moment that I ﬁnally got it! Wyatt did not want a prosthetic that had a heavy shoulder harness. He wanted to have a device he could pull on. The movement of his elbow would enable electrodes to generate the movement of his limb and hand.

The Gift of Hope:

FREE Listing

We became connected with a team of students at the University of Central Florida. They asked for additional information and we have been informed we are on a short waiting list. It was also exciting to learn of the many advances that were being made with children who had similar limb differences and were of the same age. I guess you might think we would be anxious, but honestly, the idea that Wyatt could have a “superhero” limb fills us with excitement. Wyatt put it best,“I’ve waited this long. A few more months will only make it better”. In a world filled with instant gratification. I couldn’t feel prouder of his leadership in wanting the limb and his mature patience to wait for it.

Gratitude Leads to New Beginnings: This story is really just starting. We are grateful for the spirit of E-Nabling the Future, their founders, and the many volunteers leading the movement. Bringing people together across the globe to help children and adults experience the joy of holding or manipulating an object in the spirit of love is just what the holiday season is about. We do not know how long we will wait or exactly when Wyatt will receive his new limb. The anticipation of a “robot arm” has healed my heart. It has given our son hope and opened a pathway to opportunity. We look forward to sharing Wyatt’s journey to gain his 3-D printed limb. Today we share with you what we know: There is hope. The faith and anticipation that grows from that means one thing – anything is possible – even the gift of a limb. Y ADDITIONAL RESOURCES: FOR 6-YEAR-OLD ALEX, 3-D PRINTING MEANS A NEW ARM LINK: www.today.com/health/6-year-old-alex-3-d-printing-meansnew-arm-1D79972644 ENABLING THE FUTURE LINK: www.enablingthefuture.org/ UCF STUDENTS DESIGN 3-D PRINTED BIONIC ARM FOR BOY LINK: www.abcnews.go.com/US/video/ucf-students-design-printedbionic-arm-boy-24721248

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Gifts for now... and later Holidays are a time to get together with friends and family and gift giving is oftentimes a part of the party. This year there are some play products that serve both purposes. Giving gifts that encourage inclusive, collective play experiences can do so much more than please a child---they can be crowd pleasers, too. Letâ&#x20AC;&#x2122;s take a look at gifts that deliver more than just fun to children with special needs.

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PERFECT SEASON TO PRETEND

by Ahren Hoffman

The holidays are full of memories and magic. It’s a season full of stories and traditions that involve fantasy and inspire imaginations. This is the most wonderful time of year to encourage pretend play skills and connect kids to symbolic play with a much needed break from the hustle and bustle of school and time away from projects and homework (hopefully!). The imagination is the inspiration of all creativity and is a renewable resource. Allowing time for imaginations to be recharged is a rejuvenating experience. The holiday season provides a platform for kids (and adults) to refresh and restore.

A) Geosafari Pocket Scope

B) Insta-Snow by Steve Spangler Science is an exciting experiment turned decoration. Within seconds of adding water, the powder mixture turns into a solid and erupts into ﬂuffy, white snow! This snow is perfect for decorating winter scenes or sprinkling around holiday decorations to turn any place into an instant wonderland!

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C) My First Career Gear Costumes

by Educational Insights is a combination telescope and microscope that will help keep an eye out for shooting stars, interesting snowmen and unique ice crystals.

by Aeromax. Kids can dress up as first responders and learn about the service of firefighters, doctors and police officers to become holiday heroes that save the season.

D) Schoenhut's Band in a Box It wouldn’t be the holidays without the sound of music! With a little imagination, the sounds of the bells, tambourine and maracas can take a family on a pretend vacation to tropical destinations and beyond.

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E) Melissa & Doug Slice and Bake Cookie Set Share your creativity with others and make someone smile by baking and decorating holiday cookies. Add frosting, sprinkles and candies galore! This wooden set looks just like the dough you buy from the grocery store for realistic pretend play fun without the sugar high! For more information on these products, go to www.ableplay.org. AblePlay is a website sponsored by the nonproﬁt National Lekotek Center, an authority on products appropriate for children with special needs at www.lekotek.org. Find us on Facebook!

Encourage Art with co0l Art supplies

by Danelle Griner

Here are some great art materials with which to experiment for your special needs child. Since you may not be an artist, you may not even know some of these great products are out there. Your u ur child can create some cooll art just by trying out a new w art

A) Watercolor Pencils are perfect for tweens or older kids. They are a good way to transition your artist from drawing to painting. Watercolor pencils look similar to regular colored pencils and can be purchased in most craft or art supply stores and come in various price ranges. Once you color in the area with a color, you can run a wet paintbrush across it and get the effect of watercolor paint. Experiment with a more dry brush or more water on the brush to create different effects.

B) Tempera Paint is a nice way to introduce your child to paint. It is inexpensive and can be a nice medium for learning basic painting skills. It can be mixed from powder and comes in liquid form or cake form in a tray. I especially like the paint trays that contain the cakes of paint. It is easy for kids with ﬁne motor challenges to

stir their brush in to get paint and it doesn’t spill like the liquid form.

These can be found in most art supply or craft stores. Paint over the top of oil pastels with your child’s watercolor paint set or watered down tempera paint and you will get some cool effects of wax resist over the paint.

C) Chalk Pastels are especially a great art medium for kids with limited hand mobility. Chalk sticks can go in between fingers of a fist or stick out of a clenched fist. The powdery effect creates neat blending combinations of color. Use a Q-tip, or tissue, rubbed over the colors for blending if you have an artist with sensitive sensory issues. Anyone can make interesting color designs and get their hands in this art material even with severe fine motor limitations. Chalk pastels can easily be found in most art supply or craft stores.

E) Clay is always a nice medium to just start playing around with. Practice rolling clay into balls or strips which works well for improving ﬁne motor skills. Carving with various tools your child may ﬁnd laying around can create some cool projects. I like a product by Crayola called “Air Dry Clay” because it is easy to work with, and a little sturdier than other kinds when it dries.

D) Oil Pastels similar to crayons, have a “waxier” form and the colors are more intense. These are good for any age and good for ﬁne motor skills. Oil pastels can be thicker or thinner; thicker pastels do not break as easily.

Danelle Griner is the founder of Art Shop. She specializes in therapeutic art instruction for individuals with disabiltieies. Go to Artshop to ﬁnd easy to teach adapted art projects for children with special needs. www.artshoptherapy.com

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Holiday cheer and technology

for the new year

by Cristen Reat and Amy Barry

‘Tis the season for new technology! If you are considering gifting technology for the holidays, you may appreciate some guidance on sorting out which device to purchase, must-have accessories and apps to buy with those iTunes and Google Play gift cards. Smaller tablets are quickly becoming a favorite technology device for children. They ﬁt well in small hands, are easy to carry around, and offer accessibility features that full sized tablets boast. Parents are ing them for educational purchasing support,t, organizational tools and entertainment. n nment.

C A) iPad Mini 3, $399+ iPad Mini 2 ($299+), iOS and iCloud Pros: Simplicity, vast app market, excellent accessibility options Cons: Expensive

B) Google Nexus 7, $229+

D) Poetic Slimline Case Tweens and teens do well with the Poetic Slimline Cases and are available for all three tablets listed. Sturdy folder design providing protection to the screen and the back of the device. The microﬁber interior lining offers scratch and dust protection as well as anti-slip protection when rolling back the cover in multiple view positions. $9.95 - $19.95 Can be purchased from Amazon.

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Android Pros: Value, increasing app market growing accessibility options Cons: Issues with accessibility options, mediocre camera

C) Kindle Fire HDX, $179+ Fire OS Pros: Affordable, excellent e-reader, some accessibility options Cons: Limited app selection, interface is geared to buying items from Amazon

Some BridgingApps favorites are:

Starfall Snowman

Holiday Charades

Holiday Bingo FREE Bingo Game

Jan Brett’s The Night Before Christmas.

Decorate the Christmas De D tree with Elf on the Shelf®, Christmas Game SSh

The Nutcracker and the Mystery of the Disappearing Cheese

Chai on Chanukah

Cookie Doodle

Peekaboo Presents

Sleeps to Christmas Lite - Christmas Countdown

E) Abilitations Integrations Ellie Grip Glove

Designed for training a child to use their pincer grasp. With only the index finger out of the glove, the child can deliberately touch a desired area of the screen without worrying about other fingers or the palm accidentally activating a different area. We have used this sock with children who have a fisted grasp, Cerebral Palsy or poor fine motor skills who can be frustrated by their inaccurate hand movements. $7.99 http://store.schoolspecialty.com/OA_HTML/ibeCCtpItmDspRte.

jsp?item=239038&minisite=10206

F) The CHAT Bag

This bag ﬁts over a variety of protective cases and has an adjustable strap. It can be especially useful for children who are non-verbal and use a tablet as a communication device, as it allows the user to have the screen exposed at all times. Designed for the iPad and iPad Mini, can custom order to ﬁt other tablets. $30.00 CHAT Bag can be purchased at http://www.chatbag.net/

G) ArmorBox Kido Series Lightweight Convertible Stand Case For the iPad mini, great for younger children. It utilizes impact resistant PCB construction, along with lightweight building materials and a choice of many different colors, which give your child’s mini style and character when they are using it. $14.99 - $39.99 Can be purchased from Amazon.

H) Ion Clipster

Paired with a mobile device, the ION Clipster UltraPortable Bluetooth Speaker with Built-In Clip is a cool and functional way to magnify sound from an iPad, Nexus or Kindle. Easy to use, rechargeable, portable and quite loud, the Clipster is a must-have technology accessory for individuals who use their tablet for speech communication. $14.99 - $49.99 Can be purchased from Amazon.

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

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Read, learn and Grow A witht books

by PSN TEAM

This holiday give the gift of learning. This is an excellent way to give affordable, fun and educational gifts that provide discovery, escape and surprise. Let their imaginations expand while providing something that can be used time and time again.

A) Special Day Cooking: A Life Skills Cookbook by Beverly Worth Palomba EVERYDAY RECIPES FOR THE SN COMMUNITY: Recipes are in large type and easy-to-follow steps for all skill levels. They are safe -- needing only a microwave, toaster or blender and a plastic knife to cook, and sometimes no equipment at all.

B) The ABCs of Yoga for Kids by Teresa Anne Power Make exercise a fun family affair. Kids Create healthy habits as early as possible and inspire children to engage themselves. The book serves a dual purpose by teaching young kids the alphabet while paving the way for a life-long tradition of health and ﬁtness.”

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C) Jokes for Kids: 299 Clean Jokes for Kids by Lizzy Burbank Kid tested, Kid approved! These jokes are great to tell over and over and are perfect for children. It also includes “knock-knock” jokes, sports jokes and tongue twisters. Laughter is the best medicine.

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D) The Family Doodle Book This journal gives parents and kids a place to draw and write together Featuring 100+ interactive prompts, this will take you and your children on a journey through your wildest imaginations. Once all the pages are complete you’ll end up with a treasured one-of-a-kind keepsake.

Special advertiSing Section

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DEVORA, 29, started handpainting artisan picture frames using tactile adapted mittens. She was born missing the bridge between both halves of her brain, and this is an effort to help educate others that everyone is abled in their own way! Her frames can be custom ordered, or chosen from ones in stock. Gift certificates are also available! Order YOURS today!

www.framesbydevora.com framesbydevora@yahoo.com (224) 558-4509

Shop On-line and Save Time

brain games for the season

by Lynda Sloan Allen

Everywhere you look these days it seems that there is information about building our brain’s capacity and skill. “Change your brain and you’ll change your life,” they say. Could it be true? Dr. Amnon Gimpel, who wrote Brain Exercises to Cure ADHD, thinks so. He believes that speciﬁc targeted brain exercises can actually be effective in stimulating permanent brain growth and development. Well, if we can build stronger cognitive skills, it is surely reasonable to believe that our academic skills can become stronger, too. This is really exciting, especially for those of us helping students of every age with special needs! Can you guess the best way to exercise the brain? Did you guess play games? If so, you are right. How fun is that? There are so many brain games that you can play; new ones as well as those tried-and-true old ones. There are hands-on games, online games, app games, and even leisure mental games (like the ones you play on a long drive). Soon, you will become a pro at including this new approach to building your child/ student’s brain into your regular activities.

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D A) Doodle Dice Another fun dice game to match picture designs with 1 to 6 dice, which also requires logic and reasoning, plus patience, to let the “dice roll as they will”.

B) Spot It

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Also quick, this game primarily builds visual processing skills plus attention and focus.

C) Dr. Seuss Matching Game Use any type of cards to create your own matching game to build short-term memory and attention.

D) IQ Link A 3-D version of a jigsaw puzzle requiring strategy along with all the other brain skills described above.

The games you want to look for are those that help practice and teach the following cognitive skills: Attention Skills: The ability to attend to incoming using sustained (focused), selective (regardless of distractions) and divided (multi-tasking) attention. Memory: The ability to store and recall information both in short-term or working memory and in long-term or stored memory. Logic and Reasoning: The ability to reason, form concepts, and solve problems using unfamiliar information or novel procedures. Auditory Processing: The ability to analyze, blend and segment sounds which is the crucial skill needed for learning to read. Visual Processing: The ability to perceive, analyze, discern/discriminate and think in visual images. Processing Speed: The ability to perform simple or complex cognitive tasks efďŹ ciently and effectively.

E) Q-Bitz Q Bt Play alone or competitively. Helps build visual discrimination and eye-hand motor coordination by manipulating dice to follow a picture design.

F) Blink

A quick game that helps build attention and focus, plus visual discrimination, while following multiple, simple directions.

G) Countdown A fun game to practice and build memory of basic math facts up to 12; mostly adding and subtracting.

H) Jigsaw Puzzles Helps build strategic planning, visual discrimination, and attention skills. Start with big puzzles (24 pieces or less) and gradually build up.

Lynda Sloan Allen, is the owner of Make Your Mark in Life Learning arning Center in Vero Beach, FL. Lynda is the leader of a team of extraordinary tutors rs who focus on the whole development of the child by developing cognitive/brain and social/ emotional skills along with academics in every tutoring session. Her website is filled with great information: www.makeyourmarklearningcenter.com

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Mom Approved Gifts: PERFECT SEASON FOR FUN

C by Julie Jones

Buying gifts for a child or teen with special needs can prove challenging. As a Mom to a son who has Cerebral Palsy, I have struggled over the years to come up with gifts that my son can use and that he will find fun and exciting. My son, BJ, is non-verbal and has problems with his hand function and mobility and that limits what I can buy. Every child is different in their level of ability and I do find it hard to find age appropriate gifts. Although I strive to give BJ age appropriate gifts, I am conscious that there is no point in it being ‘appropriate’ if he cannot do it orr get enjoyment from it. Keep in mind, it may take more time to buy a gift for a child with special needs, but the joy of seeing them enjoying playing, and being ablee to use the gift, is worth every minute of effort.

A) Hover Toys

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It makes the sound of the vehicle or animal when the puzzle piece is correctly placed in the puzzle board.

D) Chubby Markers

B) Pop-Up Toy

BJ has one of these Air Hogs and loves it. These also come in a fairy version. Holding your hand out flat and moving it controls the aircraft’s flight. This is good for someone who has good hand control. It does take skill to keep it airborne and in the right position, but the great feature of this toy is that it doesn’t require good fine motor skills, like many remote control operated toys.

There are springs under the little, wooden-people pegs. Isolating a ﬁnger is the aim and when you push down on the pop-up toy, it springs out of the container. Lots of giggles and fun can be had with this toy.

C) Sound Puzzle I am a big fan of the Melissa and Doug range of toys. This is a new take on the old matching puzzles.

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We haven’t used these chubby markers but they look easier to grip than the regular thin markers for someone with poor hand function. They grabbed my attention when I was in the toy shop recently.

E) Playon Crayons Maintaining grasp of a pen or pencil can be hard for many children with special needs. BJ’s Occupational Therapist made him a little lycra holder for these crayons. The lycra holder had a slit in it which the crayon slipped into and then wrapped around his hand. A little piece of Velcro attached it so even when he let go of the crayon it remained in reach.

SUGGESTIONS FOR TEENS

J F) Pull P ll String St Toys T Pull string toys have been fantastic for BJ. He has had a variety of them over the years. This UFO toy was very popular last year.

G) Pump Rockets BJ has good strength in his feet so, with assistance, stan tan nce cce, e, he can manage these pop up rockets. It is a great Reward for managing to stomp your foot. It requires him to look, focus and then target the pump with his foot.

H) Hover Strike This is built for indoor play. The hover disc can glide on most surfaces and has bumpers so it doesn’t damage walls. BJ ﬁnds using his feet works well for him so he has been more accurate kicking the hovercraft than using his hands. The toy also comes in a soccer version.

I) Pump Action Water Game BJ ﬁnds pump action toys work well for him. He can’t manage the ones with a trigger, but this water gun is a great alternative and has good size handles for gripping.

BJ has wheel guards on his wheelchair and the design has been a great conversation starter for people we meet when we are out and about. Kids comment and think it is ‘cool.’ Wheel guards would make a great gift. They come in a variety of designs including abstract graphics for older kids. For teens who love music there are CDs and iPods, but for a unique gift, why not have a personalised song written for them? I recently met the founder of Romance Outsourced (don’t let the name put you off, they do songs for birthdays and other occasions, not just Valentine’s Day) and I think this is a terriﬁc gift idea for teenagers, or for anyone who is difﬁcult to buy for and who also love their music. All you need to do is send the guys at Romance Outsourced some information about your special person, they will come up with lyrics, record the song and then send it to you in an MP3 format. Head to their website for more information http://www.romance-outsourced.com/ I hope this proves helpful to parents and families searching for a special gift for someone with special needs.

J) Magnifiers Bug in a jar with magniﬁer. I can imagine lots of little people enjoying the bug world magniﬁed. Personally, I like my bugs outside, but little people seem fascinated by bugs.

Julie Jones is the creator of Have Wheelchair Will Travel (www.havewheelchairwilltravel.net) where she combines her skills as an ex travel consultant with her life and experiences as a Mom to her son BJ who has Cerebral Palsy.

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Dealing with Changes in School Routines During the Holiday Season by Amanda Morin

or many households, the holiday season is a time ﬁlled with changes in routine, which can be stressful for both parents and kids. Changes in routine aren’t just limited to home this time of year. In schools, the period between Thanksgiving and New Year’s is ﬁlled with interruptions, and it’s more than just a few days off here, or a long vacation there. For children with special needs, those interruptions have the potential to have an impact on learning, behavior and progress. Here are some of the more common disruptions you might see this time of year and ways to troubleshoot them.

Amanda Morin, is an early intervention specialist, education writer, special education advocate and mother of two children with special needs. Her latest book, The Everything Parent’s Guide to Special Education, aims to demystify the special education process and empower parents.

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DISRUPTION #1:

Changes in your child’s daily schedule. Most teachers try hard to keep as close to a normal schedule as possible during the holiday season, but there are often assemblies, toy and food drives and rehearsals for holiday programs. Shorter weeks due to days off can also mean a class’s “specials” (such as art, physical education and music) have to be rescheduled to different days.

TROUBLESHOOTING STRATEGIES: s !SK ABOUT PLANNED SCHEDULE CHANGES: Call, email or sit down with your child’s team to talk about schedule changes ahead of time. Write down the days, times and get a clear explanation of what each event entails. More speciﬁcally, ask about the expectations of your child during each of these changes. Will he be participating in a new activity? Will he be in a larger group than usual? Is there a room change or transportation to a ﬁeld trip site involved? How will this affect his related services? Let everybody know you’d like to be informed of last minute schedule changes—even if it means receiving an early morning phone call. s #REATE A SPECIAL EVENTS CALENDAR: Put together a weekly calendar that shows what will be different on each day. Depending on how your child learns best, you may also want to add pictures of the event to the calendar. For example, if your child will be rehearsing for a holiday program, you may want to ask his teacher to take a picture of the stage or rehearsal room. If possible, make multiple copies of the calendar—one to post at home, one for your child to carry with him and one for his classroom teacher to have handy. Cross off each day on the calendar when it has passed.

DISRUPTION #3:

s#ONlRM THAT SUPPORTS ARE IN PLACE Whatever the plan

For parents of children with special needs, holiday programs and the rehearsals that come with them can be an interesting combination of awe-inspiring and awful. There are so many things to consider like will your child be overwhelmed by unfamiliar expectations? Will the teacher leading the program be familiar with your childâ&#x20AC;&#x2122;s needs? Is your child physically able to participate in the program? Is he going to be overexcited, uncomfortable or upset by the change in routine or being in close quarters with so many children, or, will he just be an unabashed stage hog who steals the show?

s0RACTICE WHAT IS GOING TO HAPPEN AND WHAT YOUR CHILD CAN EXPECT School

Participation in holiday programs.

DISRUPTION #2:

Interruptions to IEP services It can be easy for direct instruction and related services to fall by the wayside during the holiday season. Sometimes, therapists and teachers donâ&#x20AC;&#x2122;t think itâ&#x20AC;&#x2122;s fair to pull kids away from special events. And sometimes itâ&#x20AC;&#x2122;s hard to juggle everybodyâ&#x20AC;&#x2122;s schedule for small-group instruction or individual therapy. Making up time after vacation may sound like a good idea, but doubling up on services isnâ&#x20AC;&#x2122;t the answer. The services on your childâ&#x20AC;&#x2122;s IEP need to be provided consistently to help him make steady progress toward his goals.

TROUBLESHOOTING STRATEGIES: s $ISCUSS PLANS TO WORK AROUND HOLIDAY RELATED SCHEDULE CHANGES Contact your childâ&#x20AC;&#x2122;s therapists and case manager to ask if thereâ&#x20AC;&#x2122;s a way to work on your childâ&#x20AC;&#x2122;s skills in the context of the holidays. For example, perhaps the speech therapist can work on communication goals by helping your child ďŹ nd ways to ask questions at an assembly. Or maybe your childâ&#x20AC;&#x2122;s direct math instruction for the day can use cookies from a holiday party as a way to teach fractions.

s#ONSIDER TEMPORARILY MOVING SERVICES TO BEFORE OR AFTER SCHOOL If youâ&#x20AC;&#x2122;re willing to bring your child to school a little bit early or have him stay a little later and the therapist is also willing, it can be a way to ensure your childâ&#x20AC;&#x2122;s getting the instruction he needs without missing holiday fun in the classroom.

TROUBLESHOOTING STRATEGIES: You may not be able to predict whether the show will go off without any hitches for your child or if it will be full of glitches, but there are some proactive measures you can take. s #LARIFY HOW YOUR CHILD IS GOING TO PARTICIPATE: Some children donâ&#x20AC;&#x2122;t have the staying power to make it through an entire program, especially if some of it means sitting or standing on risers while other classes perform. Have a conversation with your childâ&#x20AC;&#x2122;s team about how his needs will affect his participation. Maybe he can sit off to the side until itâ&#x20AC;&#x2122;s his classesâ&#x20AC;&#x2122; turn to rehearse or perform. Perhaps it would help to sit near a teacher or on the very end where other kids do not crowd him. Involve your child in the conversation if possible.

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is, make sure thereâ&#x20AC;&#x2122;s an adult who knows it and will help put it into place. That may mean a paraprofessional is right near your child to provide subtle verbal or visual cues. It could mean somebody is available to help your child physically navigate the performance space. Just make sure both you and your child know who that person is.

rehearsals will help your child learn where to stand and what to say and sing. But children with special needs may need to rehearse the less obvious things, too. Give your child some time to wear and get used to his costume or dressy clothes. Talk to him about appropriate ways to interact with the audienceâ&#x20AC;&#x201D;for example, practicing a smile and a nod instead of a huge wave and a shout-out.

s (AVE AN hESCAPEv PLAN In some cases, despite the best-laid plans, things may not go well. Keep on eye on your childâ&#x20AC;&#x2122;s stress level. If heâ&#x20AC;&#x2122;s anxious and overwhelmed or teachers are calling you in frustration, it might be time to have him bow out. As nice as it would be to see your child participate, itâ&#x20AC;&#x2122;s not worth watching him struggle, lose progress or jeopardize the relationships heâ&#x20AC;&#x2122;s built with his teachers. Finding ways to minimize the impact of routine changes during the holiday season may help ease the post-holiday transition, too, making it feel like the New Year without feeling like a new school year all over again. Y

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Why Language is Essential in Movement by Eric Chessen, M.S., YCS

“It’s time to work with Eric!” No. It isn’t. That’s a typical instruction parents give prior to my sessions with their children. True, we will be working on some target activities and continuing to master goals, but the way we approach instruction, in the gym, home, or classroom, is essential for success. It’s not time to work with Eric, not in the common sense. It’s time to play. For many young individuals with autism and related developmental disabilities, vigorous physical activity is neither a regular occurrence nor anything approaching reinforcing. Associating new, potentially aversive activities with terms that imply “have to,” sets a tone of work rather than exploration and play. It can be challenging enough to embark upon a new series of medicine ball throws and squats when one has never before heard of, seen or performed any of these exercises. Both the activity and the situation are new and can be anxiety-provoking. “Have to,” implies that there is a demand with no choice, that physical activity is something that needs to be done. And certainly physical activity is something that needs to be done, but Autism Fitness rule # 1 is…You can’t force fun. Just telling someone that something is enjoyable or “fun” does not automatically make it so. Equally important is refraining from instructions that sound like demands. Since

it is never wise to eliminate a problem behavior without providing some functional alternatives, here are a few suggestions for initiating physical activity:

s h)T S TIME TO MOVEv s h,ET S PLAY v s h,ET S TRY THISxv s h???????? EXERCISE NAME TIME v

So there’s our starting point, on to coaching and instruction. Language and the delivery of information can be the difference between frustration and fascination. Providing too much information verbally can be overwhelming for any athlete. Keeping verbal cues to a minimum provides two key beneﬁts:

s ,EARNING THE ASSOCIATION OR hCONTINGENCYv BETWEEN THE NAME OF AN ACTIVITY AND THE PERFORMANCE OF THAT ACTIVITY s 3HORT VERBAL INSTRUCTION ALLOWS THE INDIVIDUAL TO PROCESS THE INFORMATION WITHOUT LOSING ANY OF THE STEPS

I tend to keep my verbal cues at ﬁve words or less, particularly when I am working with a new individual or teaching a new activity. Here are a few examples:

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fun fitness health & ﬁtness “Grab the ball. Do push

throws!” “Step over the hurdles” “Do seven Sandbell slams” “Touch the blue cones first” When first teaching the exercise/activity, providing a visual cue is tremendously helpful. Many of my athletes respond well to motor imitation. Demonstrating the activity prior to them beginning, or even during the first few repetitions or steps, can help your athlete focus on what he/she is supposed to be doing. There is, of course, the common issue of the individual performing the activity incorrectly. Performing an activity incorrectly stems from one of the three areas of ability in the Autism Fitness PAC Profile approach. These include physical, adaptive, and cognitive skills. When an individual cannot perform the activity correctly, we should figure out whether it is one or a combination of these ability levels. If there is a deficit in gross motor skills, strength, stability, and/or coordination, which is very common among the ASD/ SN population, we have to figure out a way to regress the movement. I’ve often heard “encouragement” or “coaching” that goes something similar to “No, not that way,”“No, your other left,”“Do it right,”“Do it the way I showed you,” or “You can do that.” If the deficit is physical in origin, the individual can’t actually do that, not yet. Suppose you are not an advanced physicist, and someone barges into your cubicle demanding “Come on, fix this quantum mechanics equation! You can account for the issues with String Theory!” In addition to that instruction exceeding five words, it is also highly likely that the skills necessary are beyond your current capacity. Such is also true for the special needs individual who does not have the baseline skills to perform a proper push throw just yet. If the issue is adaptive in origin, the individual may or may not be able to perform the activity correctly. We don’t know, because they are not motivated enough to perform the target exercise or movement. This occurs often in my assessment sessions, where the instructor (me) and environment or equipment are new, and expectations

have yet to be established. I’ve had plenty of introductory sessions that equate to observing the individual run, bounce, or meander around the space while any attempt on my part to intervene with a simple cone touch or standing on spot markers is met with resistance. If the issue is cognitive in origin, the individual may have difficulty with the form of information/instruction. Successful coaching is about determining whether an individual will learn better with a visual or physical prompt for a particular activity. Often it is a combination of first providing a physical, guided prompt, and then fading back and providing only the visual cue or imitation. With respect to verbal cues, less is better. Teach through example and guidance rather than expecting the individual to know what to do and to perform it correctly. A proactive approach to both teaching and reinforcing physical activity leads to both skill acquisition and a situation that is more reinforcing, yes, fun, for the individual. Providing behavior-specific praise gives the learner feedback about what he/she is doing correctly. Some examples: “Great job bending knees and jumping!” “Good overhead throw. Nice looking forward!” “Great squat with feet on the floor!” Behavior specific praise both encourages and educates. It reinforces the relationship between the instruction and the activity. Language and communication from the beginning of an exercise/active play session to the end is instrumental in developing and progressing skills that can lead to a lifetime of health and independence. Final key points:

s !VOID h(AVE TOv OR DEMAND STYLE INSTRUCTION s +EEP VERBAL DIRECTIONS BASIC AND SHORT s 0ROVIDE PROMPTS BASED ON THE INDIVIDUAL S LEARNING STYLE s 'IVE REGULAR BEHAVIOR SPECIlC PRAISE s %NCOURAGE EXPLORATORY MOVEMENT AND PLAY Y Eric Chessen, M.S., is the Founder of Autism Fitness. An exercise physiologist with an extensive ABA background, Eric consults with families, educators, and ﬁtness professionals around the world. Eric works with his athletes in the NY metro area and is the author of several E-books. Visit AutismFitness.com for more information.

NOV/DEC 2014

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a time for family and a time for food by Barrie Silberberg

CANDY What would the holidays be like without candy? Not much fun, especially for young children. Even if your child is on a special diet or you are just searching for healthier options,, there are many web sites that can provide a variety of fall and winter candy choices. The Natural Candy Store has a variety of candy to choose from for any occasion and for any type of allergy or intolerance. They offer many organic options, too. Their candy does not include any artificial colors or dyes. No artificial flavors or artificial sweeteners. You also will not find any preservatives or hydrogenated oils in their products. You can search their site by holiday, by brands, by types, and for special occasions. Check out their dye free candy canes! Natural Candy Store: www.naturalcandystore.com/category/ allergen-free-candy

Yummy Earth sells natural and organic candy in small bags. Their products contain a variety of gummy-type candies. Lollipops, candy drops, jelly beans. They contain real fruit in a array of ﬂavors. Their items can be purchased online on many sites or at these establishments: Walgreens, Toys R Us, Babies R Us, Home Goods, Meijer, Fresh Market, Sprouts, or Whole Foods. Yummy Earth : www.yummyearth.com/ For more stores see: LINK: www: yummyearth.com/stores.html Indie Candy has a large assortment of natural, allergy free candy items. They sell gummies, lollipops, trufﬂes, fudge, c toffee, to marshmallows, and other treats. You can search by the t ingredient that you must avoid. You can also see their Feingold F Stage 1 and 2 list. LINK: www.indiecandy.com/ Y can order online or purchase from a few stories in the You south-east s USA. LLINK: www.indiecandy.com/category-s/307.htm

DESSERTS TO BRING If you know that someone who is attending a family or friend gathering is on a special diet, why not bring something just for them. This can also be something you might bring for your own family member. Just be sure the host or hostess knows they are not to be opened, except by the recipient on the special diet. Too many hosts have no idea that cross

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ccontamination inatio on ccan spoil the eentire food item. em. TThe dessert sshould remain omething in a closed, sealed container. If you are bringing something homemade, put it in a bag with DO NOT OPEN in red and d explain why you did this to the host. You should be the person taking it out of the bag and seeing that it is delivered safely to the people who will be enjoying this food. There are many specialist bakeries popping up all over the US, serving up allergy free foods. If you need to be sure that something is 100% allergy free of certain items, call ahead and order it. Here are some web sites that list bakeries and restaurants/cafes that specialize in certain types of allergy free foods. Allergy Eats: www.allergyeats.com/bakeries. php Gluten Free Registry: www.glutenfreeregistry.com/ If you are looking for a speciﬁc “free of” food, search online for your city, or the city you will be visiting and the “free” food (dairy free, nut free, etc.) and “bakery.” You will be surprised at how many bakeries are offering specialized desserts!

EATING OUT Some families prefer to not deal with cleaning the house, getting out the dishes, and pots and pans, and cleaning up afterwards, as well as spending a lot of time cooking and baking, and accommodating large groups of people. Some families and groups of friends prefer to go out to a restaurant to celebrate their holiday meal. There is always the chance of cross contamination for those on special diets, but here are some restaurants that seem to go the extra mile for people on special diets, which could accommodate your family and friends for their festive holiday meal. Call ahead of time, to be sure that they can safely accommodate you. Austin Grill www.austingrill.com Boneﬁsh Grill www.boneﬁshgrill.com Carino’s www.carinos.com Toffee and peppermint candy images courtesy Natural Candy Store.com

special diets health & fitness Carrabba’s Italian Grill www.carrabbas.com Claim Jumper www.claimjumper.com Legal Sea Foods www.seafoods.com P.F. Chang’s Chino Bistro www.pfchangs.com Romano’s Macaroni Grill www.macaronigrill.com Wildfire www.wildfirerestaurant.com Here are some web sites with listings of allergy friendly restaurants to help you to plan your meal.

issues. This includes keeping the special food safe, away from all other food. Many people do not understand one crumb, one drip can cause catastrophic results. It is best to allow the person in charge of the special diets to handle their own food, or the food of their family member, as they know what the person can and cannot eat. They also might want to ﬁll their plate in the kitchen, in a safe area and present the plate to the person at the table, where no one else will touch it.

LINK: www.allergyeats.com/ LINK: www.foxnews.com/leisure/2012/08/02/ultimate-guide-toallergy-friendly-dining/ LINK: www.fsrmagazine.com/restaurant-chains/most-allergyfriendly-restaurant-chains

BECOMING KNOWLEDGEABLE

If your meal will be served in someone’s home, or your own, there are steps to follow to make sure that everyone has an enjoyable, healthy, safe experience. When people are on special diets, it could be due to life threatening allergies or some foods could cause painful or undesirable outcomes. It is a kind gesture to ask if any of your guests have any special food needs. A proper host can suggest the guests bring their own special food in an ice chest, if they desire. When people have allergies or intolerances they truly need to make the host or hostess aware of their special food

LINK: www.cnn.com/2013/12/17/health/holidays-food-allergies/ LINK: www.sheknows.com/parenting/articles/1021039/how-tohandle-food-allergies-during-the-holidays LINK: www.abcnews.go.com/Health/AllergiesFood/turkey-day-menudealing-food-allergies-thanksgiving-holiday/story?id=9094733 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

EATING IN

In today’s times there are thousands of people with very specialized eating needs. Having a large gathering could make serving a meal very difﬁcult, but if you ask ahead of time and follow proper protocol, everyone can enjoy a safe, happy and joyful holiday season. Here are some additional web sites that can offer some helpful hints in dealing with allergies at holiday time for you and your guests:

Now we get Mondays off!

One day a week, cut out meat.

fun & functional power of play

Can You Do The by Barbara Sher

fter a holiday party, there might be an excess of empty aluminum cans. Perfect. It’s just the right material for a fun game. So, before you bundle the cans up and take them to a recycling center, play the game, “Can you do the CanCan”? Start off with everyone sitting in a circle and each person has 2-3 cans. One person puts one of their cans on the ﬂoor in the middle of the circle and then, in turn and one by one, each player adds their can to an ever-growing tower of cans while everyone sings the fast paced CanCan song. The joy and pace of the song moves the game along as the tower continues to grow until, unpredictably but inevitably, it crashes with a wonderful clatter. The simplicity of the game means that children of very different skill levels can play but it doesn’t mean that there is not a lot of learning going on. Waiting for one’s turn reinforces impulse control, adding a can encourages eye-hand coordination and building the tallest tower together elicits a sense of social cooperation. You probably heard the CanCan song before even though it once went we with the scandalous “French “F Cancan” Canca da dance at the French Moulin M Rou Rouge in 1 the 1920’s. The ofﬁcial tun goes tune like this:

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Oh can you do d the th Can C Can? C ? If you can then I can I can Can Can if you can Can Can, can you Can Can Oh we can do the Can Can Yes we can we Can Can We can Can Can Yes we can Can Can If you don’t know the tune, you can hear the chorus at this site. http://beethovenswig.com/index.php?page= songs&category=Beethoven-squo-s_Wig-col-_Sing_Along_ Symphonies&display=7

It’s fun and challenging to sing the original version, but I modify the words to make it shorter and easier Can can can you do the can can Can you do the can can Can you do the can can can can can (repeat, repeat, repeat) You can start by singing the words slowly until everyone gets the idea of turn taking and then little-by-little speed up the tempo. Then watch as excitement and the tower build until that moment comes and they all fall down. And when it does, it’s a chance do it all again!Y Barbara Sher M.A.,O.T.R, an occupational therapist and author of nine books on childrens games. This game is adapted from Barbara’s new book THE WHOLE SPECTRUM OF MOTOR, SOCIAL AND SENSORY GAMES: Using Children’s Natural Love Of Play To Enhance Key Skills And Promote Inclusion. Check out Barbara’s other game books at any on-line bookstore or get a free game designed for your child at her web site: www.gameslady.com

learning to sign fun & functional

ASK Angie ASL - FROZEN by Angie Craft HandCraftEdASL

Holidays HandCraftEdASL

VIDEO DEMONSTRATION:

Christmas Resources: Check out some of these sites for holiday gift ideas that have sign language on them. Lots of great stocking stuffers! ADCOHearing.com – lots of gift ideas with sign language Harris communications.com - equipment and products designed for deaf and hard of hearing individuals. HandCraftEdASL.com – any of my products are great for hearing and deaf children / siblings. Rule-the-School.com – deaf education products

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

FROZEN: The hit movie of the season: let’s take some time to learn some fun winter themed signs that also correlate with the movie. Starting with the word “frozen”, which is also the same sign as ice. For the word “princess” just draw a sash across your neck with the P and come down. If you’re signing the word “prince” it just comes straight across like you’re doing a sash. Angie also shows us how to how to sign the following words: kingdom, snow, winter, reindeer, sled, Christmas, tree, magic, right, wrong, good, bad, love, forgive, nice, glove, mittens, coat, hat, and ﬁreplace. Signing is fun and a great way to communicate in a different language.

TIPS: 1. Remember that as the weather becomes cooler, it’s easier to allow your child to still communicate if they are wearing gloves vs. mittens. I know it sounds silly, but as a teacher, I see it every year where my students are limited on their communication abilities due to cooler weather. Parents tend to purchase the readily available mittens verses gloves. It is very difﬁcult to ﬁngerspell, or even want to sign, when your hands are cold.

2. Deaf students and those with Down Syndrome are more prone to ear infections during the changing of the seasons. It may not appear to be evident at the onset of the infection, but look for signs of the student suddenly not paying attention as much or showing a preference to a speciﬁc ear. Contact your audiologist in the county to look into possibly getting a sound system for the classroom that makes the teacher’s voice equally as loud in all areas of the classroom. If a speciﬁc student is prone to multiple ear infections each year, then this is a must for their learning environment. Have a wonderful winter and I will see you soon. Y NOV/DEC 2014

PARENTING SPECIAL NEEDS.ORG

Festive Holiday Pretzel Treats Encouraging Speech & Creating Yum!

by PSN Team & Becca Eisenberg

Ingredients Preheat oven to 250F degrees. 1 bag of mini pretzels 1 bag square-shaped pretzels 1 bag of Hershey ‘s Kisses Hugs & Milk Chocolate Hugs 1 bag of candy corn

he Holiday season is the perfect time to teach children about the spirit of giving. Gift giving can be a good opportunity and a ﬁrst step in teaching children to give of themselves. Imagine the sense of pride that can go along with the gift! It is easy to get wrapped up in the commercialism of the season, and miss the true meaning of the holidays. Emphasize that it is the care that goes into gift giving, rather than the cost of the gift, that is important. And best of all, presenting it from the heart makes all the difference! You can help children explore ideas about what they can make and give to others. Often times it is the simplest gift that makes the greatest impact, and who doesn’t love “sweet treats” during the holidays?

1 bag M&M’s 1 Wilton Candy Eyeballs

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foodie fun fun & functional

Instructions/Preparation Parent:Line baking sheet with parchment paper. Parent Kiddo: Sort candy corn, M&M’s (red,

green and orange), eyes in sets of two and broken mini pretzels for “antlers”.

Kiddo: Align pretzels on the sheet. We kept it to

about 6 pretzels per treat (reindeer, turkey and hugs). Unwrap chocolate kisses for reindeer and turkeys. Unwrap hugs and place one on each pretzel.

Parent: Put the pretzels with the chocolate kisses in oven until the kisses begin to melt down. Takes about 4 minutes: set timer. Parent/Kiddo: While the Kisses or Hugs are

melting in the oven, decide what treat you will be making ﬁrst. If it is the reindeer, make sure all of the ingredients are ready and easy to grab. You will have to work quickly once it comes out of the oven.

Parent: Remove pretzel hugs from oven. Kiddo: Reindeer: Gently press a red M&M “nose” towards

the bottom of each one. The Kisses should begin to ﬂatten out when you press the nose in it. Then add eyes above nose. Put broken pretzels pieces that look like antlers in the sides at the top above eyes. Note: If it is not ﬂattening out when you add red M&M’s, place the pretzel hugs/kisses back in the oven for 30 more seconds.

Turkey: Gently press an orange M&M nose on it

side towards the bottom of each one. The Kisses should begin to ﬂatten out when you press the nose in it. Then add eyes above nose. Stick candy corns pieces in the top to look like feathers.

Red & Green Hugs: Align pretzels on the sheet, just as if you were making the reindeer or turkey.

We kept it to about 6 pretzels per treat. Unwrap hugs and place one on each pretzel. Have parent remove pretzel hugs from oven then press a festive red and green M&M on top to ﬂatten out. Note: If it is not ﬂattening out when you press your candy into the pretzel hugs or kisses, place it back in the oven for 30 more seconds. Let the pretzel hugs cool completely and let the chocolate set for about 10 minutes in the refrigerator. These are great “make-ahead-treats”: make them 1-3 days before you need them and store covered in the refrigerator.

Gift Bags: We packaged ours for gifts using small red plates and gallon storage bags from the Dollar Store. Tie it up with a colorful, festive, wire ribbon. This is a festive, Holiday Treat for all those we need to give a special “Thank You” hug to.Y

Eat! Talk! Enjoy!

Language Time Tips: The holiday time is an ideal time to bond with your child in the kitchen. Why not make this opportunity an ideal time to facilitate language? With these pretzel treats, there are tons of language concepts that can be targeted including: expanding vocabulary, sequencing, following directions and working on basic concepts such as prepositions, actions, colors and shapes. For more Language Time Tips and for carryover activities for this recipe go here >> Becca Eisenberg is a mother of two young children and a speech language pathologist, author and instructor. Her website, www.gravitybread.com encourages learning time during mealtime. On her website, she writes children’s book recommendations, app recommendations, as well as child friendly recipes with language tips their family.

Inspired and adapted from Thesunnysideupblog.com and Sallysbakingaddiction.com

parentingspec rentingspe c ia iialne a lne ne e ed eds dss .org d .or g

Temple Grandin, PhD Doctor of Animal Science

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

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

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attitudes

Proud parent; Proud Father! My son, David, will turn 19 years old in a couple of weeks. He was born 4 months premature, weighed less than 2 pounds and was diagnosed with cerebral palsy at the age of 1. We were told David would never walk on his own or be able to talk using words. David was able to walk on his own by the age of 5 and started using words by the age of 7. The past 10 years have been so amazing; he can now read books on his own and carries on small conversations with others. Last year, David walked a mile and a half at a Polar Plunge Walk for Special Olympics without HandCraftEdASL

David Paul Video

David Paul walking up the steps at the ﬁtness center for the ﬁrst time without holding on to the railing. So awesome!

David Paul exhibiting an “I CAN” attitude

Photo courteousy TImothy Paul

stopping. He can now walk up the staircase at his school without holding onto the railing. In addition, David competed at the Indiana State Special Olympic Summer Games in the sport of powerlifting and is the ﬁrst powerlifter at the summer games competing with cerebral palsy. David came home with 4 gold medals. David has surpassed everyone’s expectations. I can’t stress enough to parents: keep working with your children, it’s so amazing what they can overcome and accomplish. I am so happy to have him in my life as well as his doctors and teachers. I realize that no one can do it all alone, and we are so very blessed to have such caring people surrounding us. I am truly proud of my son, David. ~ Proud Dad Timothy Paul

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