Parenting Special Needs Magazine

Real Mom

Jessica Kovacs Shares about “seeing the world in a new way”

H O L I D AY G I F T G U I D E N O V / D E C 2 0 1 2

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“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.” ~Buddha

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

May the light of the Season continue to guide us throughout the year

~ Parenting Special Needs Team

Ask theNURSEAsk theNURSE

PARENTING SPECIAL NEEDS.ORGNOV/DEC 2012 3

FeaturesReal Moms ShareFeaturing Jessica KovacsShares about “Seeing the World in a New Way ”

The Greatest Gift of AllRegaining your Health & Your Groove

Holiday Gift GuideFun & Functional Gifts

Sensational Christmas Miracles

Holiday MemoriesHoliday Cherished

Holiday Traditions

Holiday Moments

check it out!Products You Can Use & Win!

psn community newsDid You Know about, or see, the Special Needs 101 Infographic?

Sharing Updates!Sensitive SantaOne-stop-shop for all your IEP needs.FREE Parent Guide to IDEA

real lifeAsk the NurseTips for Selecting the Right & Safe Toys

Relationship RescueKeeping the peace during the holidays

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Real Mom

Jessica Kovacs Shares about “seeing the world in a new way”


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Tips forplanning your special child’s future

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COVER IMAGE Courtesy of Sarah Cookwww. Cookwire photography.com

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in every issuepsn contributors from the heart contest/giveawayseveryday heropsn marketplace

your lifeMommy Time OutsBreathing Space

Sharing real findsSparkle for the holidays

Organization TipsPreparing for the holidays

special focusTiny Light: EmmaPediatric Stoke & Hydrocephalus

Planning for your Special Child’s Future: It’s never “too early” to start!

Picky Eater Expanding food options

health & fitnessSpecial DietRecipes for the Holidays

Fun & FitnessI want a break

Super HealthAlternative Sweets

fun & functionalYoga Poses & Tips: Silent Night: How to keep the peace during the holidays

Power of PlaySaftey Pin Necklace Learning takes risks

“Foodie” fun for kids: Ham & Cheese Croissants

ASL Tips:Signs for common words used throughout the Holidays

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{holiday cherished}

M y favorite ornaments on our tree are the pictures of my children in ornament frames. Many of these ornaments were made in school with their pictures inside them. Each year, as we un-

wrapped the ornaments and hang them on the tree, is a reminder of how they have grown. Looking at the tree once it is decorated always makes me reflect on various times and recall heartwarming memories. I have often thought it would be wonderful to decorate a tree with all family members, and to see all of our loved ones “scattered along the branches” then reminisce on all the times we’ve had, as well as to remember with fondness those that have left us.

Chantai Snellgove, Proud Mom

FOUNDER/EDITORIAL DIRECTOR Chantai Snellgrove

[email protected]

PUBLISHER/EDITOR-IN CHIEF Tom Snellgrove

[email protected]

DESIGN DIRECTORChantai

[email protected]

GRAPHIC DESIGNERMichael Leisttein

[email protected]

ADVERTISING SALES Chantai/Judy Jaszcz

Corporate Sponsors & Ad Sales [email protected]

Curt MellottMidWest & Lower Eastern

[email protected]

Nadine TimpanaroSchools, Camps & Residences

[email protected]

CIRCULATION & PRBob Jaszcz

[email protected]

WEBMASTERSean Thompson

[email protected]

Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www.parentingspecialneeds.org

Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held respon-sible 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. Accep-tance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information.

Parenting Special Needs Magazine, is © 2012 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permis-sion is prohibited.

PUBLISHED BY: Parenting Special Needs ,LLC310 21st. Court S.W. Vero Beach, FL 32962

www.parentingspecialneeds.org


Barrie SilberbergAuthor

Susan Parziale Organizing Consultant

It is not how much you do, but how much love you put in the doing. ~Mother Teresa

psn contributors making a difference

Robin NewmanLCSW, PC Clinical

Social worker, Adjunct Professor

Meme HienemanPh.D. in Special

Education

Eric Chessen M.S., YCS, Exercise

Physiologist

Douglas HaddadPh.D. (“Dr. Doug”) Author, Full-time

Contributing Writer

Cynthia FalardeauExecutive Director of the Education

Foundation of IRC

Christina BartlettRegistered Dietitian

Sarah CookPhotographer

Cookwire photography

Anara MidgettRegistered

Nurse,BSN,AE-C

Chynna Tanara LairdAuthor,

Psychology student, Freelance writer

Kami EvansCertified Special

Needs Children’s Yoga Instructor

Barbara Sher Pediatric Occupational

Therapist & Author

Ernst VanBergeijkPh.D., M.S.W.

NYIT/VIP

Sarah ChoueirySpeech & Language

Pathologist

from the hearteditorial director

Happy Holidays.....

As I was driving down the street the other day, I saw Christmas decorations already up in a few areas. I couldn’t help but remember back in time when we all waited until after Thanksgiving to do that. But, just as soon as I thought that, I immediately thought that with us, in the special needs community, we have to be planning things so far in advance that we often times don’t get a chance to slow down and enjoy whatever it is that we are, or can be, joyful and thankful for. It never seems to end does it? Therapy, doctors, IEP’s, tests, schedules....the list could go on and on and often does. So, with that in mind, I can let you know that we will try to make some of those decisions easier for you. Please check out our Holiday Gift Guide. There are several pages of great ideas for you to consider. There is something in there for everyone. There is also a wonderful “Real Mom’s Share” story about dealing with a child who was born blind; the challenges, the emotions, and, yes, the joys.

As with every Holiday issue, I have to take a moment and look back at the year that has flown by. To all of our contributors, subscribers, Facebook Friends, followers, Family, and advertisers......thank you!!

gratitude to each of you. I am thankful, joyful, and Blessed to be a part of this wonderful, caring, and involved community that is Parenting Special Needs Magazine.

Happy Holidays to all of you,

Chantai SnellgroveFounder and Editorial [email protected]

PS. Let me know what you think of the issue,we are excited to hear from you.


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Alyssa Grace Lee- is a wonderful, smart, and fun 4 year old girl who loves “all things pink” and wants to be a “princess”. She has two older brothers, Connor (10) and Austin (8), and a service dog named Cassidy. Mom, Susan, is instrumental in advocating for Alyssa. In May, 2011, she was diagnosed with Rett Syndrome. This rare genetic disorder almost exclusively affects girls. Last December, Alyssa received a high-tech, eye-gaze communication device that has allowed her to show her family just how smart she is and allows her to communicate with family as well as with friends.

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NOMINATEyour

“Everyday Hero”

“Everyday Hero”

Honoring Everyday Heroes.

We are looking to recognize and honor “Everyday Heroes” in our magazine and also on our site. We honor ONE hero

per issue. Do you know of someone that you would like to nominate? Someone who has made an impact on you or on your child’s life? Anyone can be nominated. This is a wonderful way of saying how much that hero means to you and to your child.

It is very easy to do:

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

*Please include a picture of your hero.

*Send your submission and photo to: [email protected]

*Please put the word “Hero” in the subject line and include YOUR contact information.

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Looking forward to “Honoring” your HERO!

Did you know about, or see, the Special Needs 101 Infographic?

The USC Rossier School of Education, in honor of Special Education Month, created the following infographic (only showing a portion) as an introduction to this rapidly growing field. It provides an overview of what special education is, how students are referred for special education services, and definitions of acronyms common to the field like “IEP” (or “Individualized Education Program”) along with much more.

Although special education began in the 1950s as a movement to win individuals with disabilities a free and quality education, it has today come to embrace the ideal of inclusion, with many students with disabilities being taught in general classrooms alongside their non-disabled peers. Thus, as fully inclusive classrooms become more of a reality, all prospective teachers can benefit from a better understanding of the basics of special education. The number of students receiving special education services is also steadily on the rise, so now is certainly the time to start learning more about the field.

Source: USC Rossier School of Education

Infographic Link: http://rossieronline.usc.edu/special-education-infographic/

KNOWyouDid

LIKE US ON FACEBOOKVisit facebook.com/parenting.special.needs.magazine to getadvice, talk with other parents and become eligible for giveaways.

Jayden Scout loves Jayden, and shares

Christmas kisses.

Submitted by Donna Fallon

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

SPECIAL FANS

Join Us on Facebook!oin Us onJoin UsUs on FaFaceboFacacecebeboboobooook!!

My My husband and I are preparing for an upcoming CRAFT fair. My son, Elliott (age 12 with Williams Syndrome), keeps

referring to it as a CRACK fair. Submitted by Brandi Jarvis Boyer

Wonderful “WACKY” Words or Phrases

QA&

ASK SPECIAL PARENTS

Any suggestions for dealing with oral care battles in ‘tween years would be greatly appreciated. My ten year old son with autistic disor-der and hates to brush or have his

teeth brushed. He insists it hurts despite nu-merous visits to his dentist to confirm there is nothing wrong besides poor oral care. He has braces. Thank you very much!

Many great ideas were shared like:

Marie Shortt- I am HFA (High Functioning Au-tism). The toothpaste stings and the brush hurts so I switched to Supersonic Electric Tooth Brush. It is expensive, but worth it. I switched to a Tom’s of Maine toothpaste that I could tolerate and that does not sting...no problems with brushing now. Oh, and the only floss that doesn’t snag and that I’ll use is Oral B floss, in the blue square.


Sharingupdates

psn community news


FREE Parent Guide to IDEA.

The National Center for Learning Disabilities (NCLD) has created this Parent Guide to the Individuals with Disabilities Education Act (IDEA) so you can become an informed and effective partner with school personnel in supporting your child’s special learning and behavioral needs.

This Guide is designed to give you a brief, yet helpful, understanding of IDEA 2004 and takes you through the special education process. Special Parents from around the country provided their invaluable input to help make this guide extremely user-friendly and easy to understand.

Regardless of your child’s particular difficulties or disabilities, this free, user-friendly resource will empower you to effectively navigate the special education process as a fully informed member of the IEP team.

You can download your free copy of theNational Center on Learning Disabilities’ IDEA Parent Guide here.

New one-stop-shop for all your IEP needs.

SeeMyIEP.com: Here you will find out-standing resources, state by state information, thousands of real IEP goals and objectives, real sample IEP’s that have been submitted by parents, teachers and experts answers to your most commonly asked, frustrating IEP questions. SeeMyIEP.com was creat-ed by a psychotherapist/Special Needs Advocate as well as a parent who has two children with special needs. Providing you continuously with new and current informa-tion. To access, you must be a member. They offer a monthly or yearly mem-bership.

SensitiveSantaPlease check with your local shopping malls thisholiday season to see if they are participating in the Sensitive Santa program. This wonder-ful program allows our special kids to be able to have a memorable time with Santa in a less stressful environment. The above photo is courtesy of Eden Autism Services who participated in the Noerr Program (a photography company) at the Edison Mall in Ft. Myers, Florida.

Photo courtesy Eden Autism Services, photo of Santa and Cheyenne Muddiman

Download your

Free E-Book http://info.ncld.org/free-

ebook-idea-parent-guide/

Locate It Check with your

local mall!

no limits!Support Different-Ability Awareness

Temple Grandin, PhD Doctor of Animal Science

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.

parentingspecialneeds.org

Temple Grandin, PhD Doctor of Animal Science

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.

Autism FitnessDr. Kwame Brown, Neuro-Scientist/Child Development ExpertEric Chessen’s

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

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

Encourage gratitude. Children of all ages can acknowledge gifts and acts of kindness with a note or a phone call. This can be a good opportunity to help your child recognize and appreciate the value of both money and time. [Source: SparkSavings]

no limits!

Lauren Potter - American ActressAs 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.

Support Different-Ability Awareness

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Jessica Kovacs Shares about “Seeing the World in a New Way ”

Jessica Kovacs contributed to this issue’s “Real Moms Share” section of the magazine. We asked her to give us an insight into herself, as well as into her life raising

her son Thomas who is blind (Persistent Fetal Vasculature Syndrome). We asked her a series of questions; some serious and some “just for fun”. See what she said....

Life’s lessons

Photos Courtesy Jessica Kovacs PARENTING SPECIAL NEEDS.ORGNOV/DEC 2012 15

PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.

JESSICA KOVACS: My husband Derek and I have been married for six years and Tom is our first and only child. Tom turned three this fall and entered preschool at the Western Pennsylvania School for Blind Children. We live in Pittsburgh, Pennsylvania, and are lucky to be surrounded by a supportive network of friends and family

PSN: You mentioned that you were definitely “baptized by fire” when your child was only 2 weeks old, please explain.

JK: We never had even a brief “honeymoon” phase when Tom was born. The second he was born we knew something was “up” and we were nervous. I gave birth in a large hospital that is also affiliated with the University of Pittsburgh, so it is a teaching hospital and has lots of research going on as well. Tom saw many specialists from the NICU and they called other experts in to see him (ophthalmology, neurology...) In hindsight this saved us from taking our tiny baby to many specialists (even though we saw plenty of them anyway), but at the time I just wanted to enjoy my baby; but there were constant examinations and tests nonetheless. We were thrust right into being special needs parents and had to start taking notes and fighting for our son right away.

PSN: Tell us a little bit more about Toms’ personality. You mentioned that Tom likes Bob Marley, yet your husband plays guitar and likes heavier music. Give us some insight as to what you mean.

JK: Tom is absolutely his own man and he isn’t afraid to let you know what he likes. My husband has always played in bands and when we knew that Thomas was blind he seized on the opportunity to stimulate him with music. We started with classical, jazz, and children’s music but soon added Motown, reggae and rock into his playlists. Tom used to put his hands over his ears as soon as he heard any type of “metal” but now he is even enjoying a bit of that.

PSN: What has therapy (Early intervention, pre-school) been like for your child, Tom?


JK: Tom had his Early Intervention (EI) evaluation when he was one-month-old. Our pediatrician was on top of things from the beginning and really facilitated our EI referral and specialist referrals. We were very lucky.

Tom began working with a Teacher of the Visually Impaired when he was two months old. During his first six months he had five eye surgeries in Detroit so he was often in recovery with a post-op eye drop regimen, and patching, to protect his eye. He had a lot to deal with for such a little guy. He was born with no visual response but developed at least light perception after his surgeries. It was exciting to see him begin to open his eyes because previously he kept them shut tight! His TVI used his other senses (smell, touch, sound) to keep him stimulated and get him interested in the world around him. We let him smell spices from the kitchen and feel interesting textures. As he got older, we switched to a TVI that was also trained in Orientation and Mobility, so that Tom could learn to navigate the world safely and confidently using a long white cane and hand trailing techniques.

We added physical therapy to address his hypertone (tight muscles). This helped him tremendously. OT was added for feeding and fine motor skills. Around the 6-8 month mark, Tom began to fall off

PARENTING SPECIAL NEEDS.ORGNOV/DEC 2012 17Photo Courtesy Jessica Kovacs

the growth chart and began refusing feeds. It was the beginning of a long road of food refusal that eventually resulted in Tom getting a gastronomy tube (G tube). It was a hard decision but it improved Tom’s life, and my life, so much! We used to spend so much time on feeding that we didn’t have time for anything else. I was under constant stress because he wasn’t getting the calories or hydration he needed. We got a nutritionist added to his therapy routine as well.

Eventually, we sought additional treatment for Tom’s eating. A feeding evaluation (his second) revealed that he did not have the oral motor skills to eat! We went to the Children’s Institute of Pittsburgh’s Functional Feeding program. I can’t tell you how wonderful it was to have a plan, finally! After a year of weekly therapy (1 hour OT and 1 hour feeding therapy with a SLP) he is now discharged as a 50% oral feeder and 50% tube feed. It is a huge change for our family. We are very happy with the progress he had made.

So Early Intervention is incredibly important but you may have to go out and find additional services. I am so glad we did.

PSN: Can you share/explain about what you mean when you said you “feel you have been broken down and built anew”?

JK: I have had to face difficult choices and do things I never though I could. I used to be squeamish and shy. No more. I can be a fierce advocate and I can change a g-tube by myself. Being Tom’s mom has required me to draw strength I didn’t know I had. I feel that I am a better person, and a more empathetic person than I was before.

PSN: Why did you decide to blog about Thomas?

JK: Because blindness is scary to most people, no one knew what to say to us when Tom was born blind. I wanted people to know the dynamic and happy child I had - not the sad child they imagined. Tom has a disability, but he is not sick or sad. I also wanted to be able to help other families dealing with a new diagnosis of childhood blindness. There is so much dry medical information out there, but, there isn’t much about real families living with these conditions. Families need to see that life will be different but it can still be really good!

PSN: What have been some of your biggest obstacles/challenges raising Thomas?

JK: Teaching myself to think of things in new ways. Early learning is very visual so I have to break things down and explain them in ways that make sense to Tom. We have to do lots of hands-on exploration and description. I think people learn best when actively participating, so we get out and do stuff! There are lessons at the grocery store and everywhere else.

PSN: How do you physically/mentally do it? Do you receive any help from family?

ThomasMarshall blogspot

http://thomasmarshalldoesitall.

blogspot.com/

We have tremendous family support. I don’t know where I would be if it wasn’t for that. Both of our families live close and are active participants in Tom’s life. I love that he has such a close relationship with both sets of Grandparents. Everyone is g-tube trained so he can, and does, spend the night with his grandparents. I also have lots of extended family and friends that have followed Tom’s story from day one and have done anything they can. Sometimes just a visit to say “Hi” is the best thing someone can do for you.

PSN: What do you wish people understood about your child and blindness?

JK: I wish they understood that Tom is just a little boy. He wants to be a kid and have fun. Blindness does not stop that and I won’t let it.

PSN: What advice would you give to new parents of blind children?

JK: Set high expectations and see that you surround your child with therapists and physicians who believe in your child. Don’t accept the people that say, “he will always lag behind because he is blind.” That just isn’t true. There are some things that are harder, sure, but blindness is not an excuse. With proper training (Braille & cane training) blind and visually impaired children can read at grade level (and beyond!) and travel independently. My son is three and he goes up and down stairs and has the run of the house like any three year old should.

Don’t let anyone tell you that Braille is bad or less than print. Braille is simply a code for English and it is a key element in achieving success and independence.

If you or your family members have negative attitudes about Blindness, keep them to yourself. Kids pick up on that! They should never feel ashamed of themselves or their blindness. If your child is newly blind, your attitudes will change as you adjust; I know mine did and they are still evolving as I learn more. Education is the key to understanding and accepting blindness. You will probably have to do a lot to educate your family and friends - that is a big reason I started my blog. Of course, meeting a happy and well adjusted blind child does a lot to educate people!

PSN: Please share about one thing you’ve learned that has made a big difference in your life and that you would like to share with other parents?

JK: I try to concentrate on Tom as an individual and enjoy him. He is so fun and sweet. When a child has so much therapy and medical intervention going on, it can be easy to get caught up in that. I try to be sensitive to him and his needs as a CHILD at all times.

PSN: Please share any lessons/tips you’ve learned from your special needs child?

If you don’t like something, or you need more help, you are going to have to go change something or find more resources. No one is going to do it for you. Get on the phone or get on the internet. You need to know that help and resources are out there. I was surprised at what I found and what people offered when they knew I was an involved and interested parent.

PSN: Are there any special resources you have found that have helped you on your journey?

JK: Be friends with your therapists and your early intervention program coordinator! They have so much knowledge and many resources to share with you.


In conclusion, is there anything else that you would like to share with our readers that was not covered in this list of questions?

Try to be a big picture person. When I was in the hospital in the days after having Thomas I was a wreck. My pediatrician was due to give birth herself so she sent a colleague in to check on Thomas and I. This doctor visited when Tom was away having a test and I was pumping to establish a milk supply (Tom could not latch, I ended up pumping for a year!) she found me crying and pumping - it must have been a pitiful sight! She told me, “You have a healthy baby and you are going home with your baby, not everyone does...” It was very important because it sort of snapped me out of a fog. Yes, Tom would have challenges but he was healthy and it was time to get started on our life. I’ll never forget that.

PSN: Jessica, Thank you so much for sharing with us.

Just for about AmyfunWhat do you do to find time for you?

I read. Sometimes I sacrifice sleep to stay up and read a good book.

Mommy timeout: Dream vacation?

Hmmm. Any vacation would do! I would love to go to Hawaii. I have never been anywhere so exotic.

Favorite Holiday treat?

I love stuffing!

Your one makeup essential?

Mascara. I never go anywhere without it.

Do you drink Coffee or Tea?

Tea. I don’t like coffee at all.

Favorite wacky word or phrase from Tom?

Go! It’s his favorite word and life philosophy.

I N D E P E N D E N C E ! J U LY / A U G 2 0 1 1

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Independence: Taking the Right Steps

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B AA C K TO S C H

Brain InjuryPreventionWhat every parent

should know

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Ask theNURSEAsk theNURSE

Toy safety

concerns are

crucial as toys

can soon turn

harmful or

even deadly.

Tips for Selecting the Right & Safe Toys

What should I be concerned about as it relates to holiday gifts and toys with my special needs child? Q

AnswerAll kids love new, cool, fun things which includes toys—this includes kids with special needs and children with disabilities. As a parent it’s not always easy to find, let alone choose, the right toys for a child with special needs. How do you know if a toy will match a child’s abilities and be safe?

Through the act of play, children can experience victories, imagine new worlds and share the joy of learning. But, accidents can happen and rates of accidental injury are higher among children with special needs. This includes children with physical and psychological disabilities, and is especially true for children with cognitive, emotional and social limitations.

While basic safety rules apply to all children, regardless of ability, special attention should be tailored to ensure a differently-abled child truly understands and internalizes how to play safely. In addition, children should also be properly supervised.

Toy safety concerns are crucial as toys can soon turn harmful or even deadly. It should be noted that unless you get an appropriately packaged product from a reputable American manufacturer you may not be getting what you hoped for. Appropriate packaging can ensure that the content originates from its designated source. It is documented that three times as many foreign made products as American made products were recalled by the Consumer Product Safety Commission.

What further complicates toy safety is that the very packaging that you want to ensure you have can be a safety hazard. Packaging can injure, suffocate or trap your child. It is important that adults take away packaging as quickly as possible. Also be aware of choking hazards such as twist ties, small plastic parts and shrink wrap.

The holiday season is filled with joyous wonder. Taking a few small steps can ensure it is a safe season. Have a question for

“Ask the Nurse”. Send an email to

[email protected] make sure to put

“Ask the Nurse” in email subject line.

by

DISCLAIMER: The contents of the Ask the Nurse column (“Column”) such as text, medical information, graphics, images and any and all other material contained in the column (“Content”) are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your (or your child’s) physician or other qualified health provider with any questions you may have regarding a medical condition. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY IN SEEKING CARE BECAUSE OF SOMETHING YOU (OR YOUR CHILD) HAVE READ IN ANY MEDICAL LITERATURE!

real life advice


{holiday traditions}

We have a tradition of decorating the tree a few weeks before Christmas. We start celebrating December 10th, the day of my son’s birthday. A.J. was born premature and had his first heart

surgery 13 days after he was born…two days before Christmas. He was then diagnosed with DiGeorge Syndrome. He has been through a lot, and Christmas is particularly special because of how much he has overcome. He is 8 now and has had multiple heart surgeries. He has been off the feeding tube for almost 4 years now. He is such a Blessing! His smile gets all of us through the hard times because no matter how hard things get, his smile is always there.

~Kat (Proud Mom)


real life advice

by Robin Newman, LCSWThe holidays are always very stressful in my house. Do you have any advice on how to keep it calmer? Q

Advice Consistency and structure is a special needs child and teen’s best friend. The holidays can be very difficult to keep this flowing. Here are a few tips to

keep things in check during the madness of the holidays: 1. Keep the sugar to a minimum (it definitely has an effect on your

child/teen’s mood cycle)

2. Maintain some sort of structure (no, the tv is a bad babysitter! Create chores if you haven’t already for your child to do and be consistent)

3. Lower your expectation (your child is going to have some issues. Remember that a calm parent can help to create a mood of calmness within your child)

4. When school is out, create the same thing to accomplish daily (computer games, reading, listening to music, doing chores, crafts, physical activities, puzzles, writing)

5. Focus on keeping bedtime the same.

6. Learn how to say no to over scheduling your family and yourself.

I realize that there are some things on this list that could appear to be difficult to implement especially if you have not done so. In my practice I have many parents of special needs children and teens who have taken these suggestions and successfully transitioned into the holiday season. You must also realize that there are going to be bumps in the road. Understand that even typical children have their fair share of difficulties during their time off from school and changing their schedules. Try to take it in stride and remember to have an “attitude of gratitude” during this holiday season! God Bless and have a lovely holiday season!Robin Newman LCSW PC

Keeping the Peace during the holdiays Tips

Remember that a calm

parent can help to create

a mood of calmness within

your child

Have a question for “Relationship Rescue”.

Send an email to [email protected]

Please make sure to put “Ask Robin”

in email subject line.

© The Monday Campaigns, Inc.

Start your week off right: Make Monday family night!

When kids cook, they get a taste for teamwork.

TMeet Tiny Light Emma. This sweet, seven year old is very

social and loves those around her, especially her three brothers, Ryan, Matthew, and William. She loves gymnastics (or “jumping class,” as she calls it), swimming and baseball. Emma also enjoys playing with her dolls, going to school and trying new things. She demonstrates an amazing strength, despite her struggles early in life. Emma suffered a massive stroke in utero, causing her to lose the majority of the left side of her brain. She also developed hydrocephalus which required a shunt to be placed in her brain when she was only one month old. The brain injury also caused a seizure disorder, which is controlled with medication. However, some of her more severe seizures require trips to the hospital. Though Emma has some physical challenges and has some difficulty with communication and learning, she remains joyful. Her parents don’t know what the future will bring, but they remain positive. They are looking forward to helping her reach her potential and hope that she lives a life of joy and happiness. Emma’s parents have some great advice for other families rais-ing children with brain injury. “You never really know what the outcome will be. Don’t get bogged down with predictions; the only thing that should limit your child is your child. Be creative and see how you can incorporate and adapt things so you and your child don’t have to miss out on anything. Get the things done that you need to get done, like medical stuff, medications and therapy. But, don’t forget to give them time to be a kid, too. Also, ask for help. Include others in the care of your child so that you are able to have time to focus on other things.”

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

Pediatric Stoke & Hydrocephalus

Story written byEmily HarrisonPhotos by Ginger Snaps! Photography By Lee-Ann Dueckwwww.gingersnapsyou.ca

Tiny Light Emma

Rejoice with your family in the beautiful land of life!~Albert Einstein

Photos by Ginger Snaps! Photography By Lee-Ann Dueckwwww.gingersnapsyou.ca

special focus

Raising a child with Pediatric Stroke

& Hydrocephalus Planning your

Special Child’s FuturePicky Eater

PARENTING SPECIAL NEEDS.ORGNov/Dec 2012 25

PARENTING SPECIAL NEEDS.ORG26 NOV?DEC 2012

As administrators of two transition programs, we are often asked by parents “How can I best help my child transition to postsecondary education?”

Or “when should I start working with my child on preparing to go to college or vocational training?” A variation on this theme is when we meet parents of young children with disabilities, and they remark to us, “Oh, we don’t need to talk to you yet. Our kids are really young.” A child is never “too young” when thinking about or planning for his or her future and optimizing their chances of having a smooth transition to postsecondary education

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


“Work backward, but always look forward.” What can you realistically envision your child doing after he or she graduates from high school or has aged out of IDEA funding? If it is, indeed, pursuing a college degree and liv-ing away from home, image all of the independent living, social and vocational skills, he or she will need on top of the academic skills necessary to successfully complete a degree. Many higher functioning individuals on the autism spectrum have the intellectual ability to pursue a degree, but need assistance with and intervention in learning the social and independent living skills neces-sary to live away at college. Work backward from that image and start teaching the building blocks of the more complex skills incrementally.

Start teaching independent living skills and social skills at an early age. Pick skills that are developmentally appropriate (e.g. early elementary aged students can put laundry in a dirty clothes hamper; later elementary school students can learn to get themselves up using an alarm clock; junior high/high school students can learn to wash their own clothes).on.

Have your child periodically assessed to measure progress and document areas of disability. Include as-sessments of, not only, I.Q. and academic achievement, but adaptive behavior as well. Some individuals may have I.Q. scores above 70 (which is often the traditional cut off for services or entitlements), but still have a developmental disability based upon their scores on as-sessments of adaptive functioning such as the Vineland Adaptive Behavior Scale.

Keep copies of all evaluations in a safe place that is easily accessible. Do not give away the original or your last copy. Treat these records like gold. They can be used to document a history of disability and help establish entitlement to state services, or in a college or work setting, help provide the ground work for establishing “reasonable accommodations” under the Americans with Disabilities Act (ADA). tive Behavior Scale.

Learn as much as you can about special educa-tion, disabilities law, and entitlements, before your child reaches high school age. Know what your rights are. Know the definition of transition services; the time tables for setting transition goals & plans; and what constitutes a “good” transition plan. Visit web sites like www.wright-slaw.com to learn more.

Teach your child self-advocacy skills. There is no special education in college. They must be “otherwise qualified” to attend college and gain admission just like any other student. However, under the ADA, the student must be able to articulate what his or her disability is; what reasonable accommodations he or she might need; and present the appropriate supporting documentation. Mom or Dad cannot do this for them. Attending their own Individualized Education Program (IEP) meetings starting early in high school is a great way to practice.

Give opportunities to gain independence. As the child is developmentally ready, have them sleep over one night at a friend’s house or go to sleep away camp. As they get older and are nearing the end of high school, send them to a college preview summer program. There are ones for general education students, as well as ones designed for students with disabilities. It is a great way to gauge the student’s ability to go away to college.

Vocational Certificate Programs are excellent path-ways to employment that are often overlooked by many parents. Coursework is more practically oriented and less theoretical in nature. There a wide variety of offerings to be had. Certificates are available in traditional fields such as automotive repair, plumbing, carpentry, cosmetology etc., but also in computer repair, programming, & net-working; small animal care; and personal fitness training.

Consider a Comprehensive Transition and Postsec-ondary (CTP) program if you are unsure if your student will be successful at a four year college or if you are un-sure if a vocational certificate is a better path to the world of work and independent living for your child.

Visit the programs or colleges during an open house as a family. Engage your child in the decision mak-ing process. No matter how great you may think a college or program is, ultimately it is your son or daughter that has to commit to going there and completing the train-ing. Having them own the decision to attend a program increases the chances of successful completion. Ernst VanBergeijk is the Associate Dean and Executive Director, and Paul Cavanagh, is the Director of Academics and Evaluation, at New York Institute of Technology Vocational Independence Program (VIP). The Vocational Independence Program is a U.S. Department of Education approved Comprehensive Transition and Postsecond-ary (CTP) program. www.nyit.edu/vip . The authors also administer Introduction to Independence (I to I) a seven week summer college preview program for students ages 16 and up.

Javier eats a couple of bites of his chicken nuggets, pushes his pasta around on his plate, turns up his nose at his vegetables, and leaves

the table. An hour later, he is asking for chips and ice cream. Worried about his food intake, his parents eventually give him a snack. This pattern repeats itself almost every meal. The range of foods Javier finds acceptable is continually shrinking, while junk food consumption is increasing. What can his parents do?

Picky eating is a common frustration for parents, but even more prevalent for those with children with special needs. Many children refuse vegetables, fruits, and other healthy options in favor of empty carbohydrates and sweets. As a result, parents worry about the children’s nutrition and feel frustrated at the power struggles that seem always to ensue around mealtimes. Children may “grow out of” these patterns, but there are strategies that can help expand food choices.

First, rule out medical problems (e.g., difficulty chewing or swallowing, gastro-intestinal problems) that

could be contributing to the problem. If your child is experiencing these types of problems, get help to address them prior to or in combination with using behavioral approaches. Second, model healthy eating habits. Stock the pantry with good food and to talk to your child about why you make particular choices. Encourage all family members to eat well-balanced meals, making it easier for picky eater to follow suit. Third, restrict access to junk foods. If you decide to make sweets and less-healthy snacks available to your picky eater, do so only after he or she has consumed something healthy. It may be helpful to put these items out of sight (e.g., in a high cabinet) between meals. Fourth, establish consistent dining routines. If possible, schedule meals at the same time, expect that food be consumed only at the table, and establish regular patterns for meals. For example, it may be helpful to involve children in setting the table, dishing out the food, and clearing their plates. Fifth, make mealtimes positive, but not distracting. Engage in conversation with your picky eater when he or she is seated and eating, while limiting your attention (e.g., nagging or cajoling) for uncooperative behavior. Limit activities such as television that could distract your child from eating. Sixth, start small and build from there. Provide choices among healthier items that your child prefers and limit the portions (only what you can reasonably expect your child to finish) initially. Gradually increase your expectations for types of foods and amounts consumed over time. And finally, hang in there. Your child may whine, cry, demand, and refuse when presented with healthy options at first. Be prepared to remain firm and your picky eater will eventually learn to accept the limits you are imposing.

PICKY EATERFood Options for the

by Meme Hieneman, Ph.D., BCBA

special strategies behavior


Expanding

PARENTING SPECIAL NEEDS.ORGJUL/AUG 2012 59PARPAA ENTNTINGI SPECIECECIAALLLLLLLLLL LLL NNNNNNEEDS.ORGJJUJUJUJUJUUUUJUJUJUUUUJUUJUJUJUJUJUJUJJUJUUUJUJUUJUJUUJUUJUUJUJUJUJUJUJJUJUJUJJ LL/L//L//L/L/L/L/L/L/LLL/L/LLLL AUAUAUAUGG G 22012122 59

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your life help


Style in Seconds Not Your Mother’s Clean Freak Refreshing Dry Shampoo is the ultimate quick fix to get perfect hair, without spending hours of your time. Clean Freak acts in the same way a shampoo would, absorbing oils and giving hair a fresh look, but without water.

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SPARKLE for the Holidays Accessorizing with a “sparkly” bracelet makes every outfit feel fancy. Stretch bracelets mean you don’t have to stretch your dollars to own one. With all the designer inspired collections, you’re sure to find the perfect glitter to flaunt. The ease of stretch bracelets mean you don’t need help getting them on or off. Photo: Kohl’s; Simply Vera, Vera Wang ,Silver Tone Simulated Crystal

and Simulated Pearl Stretch Bracelet

parentingspecialneeds.orgarentingspecialneparentingspecialneeds.eds.orgrg

As an organizer I am always thinking ahead to being prepared for the holidays. I have already made an appointment with

my favorite photographer for my daughter’s Christmas card, reservations are confirmed at a new, hip restaurant to celebrate with my friends for our annual ornament swap dinner, and I am in the process of picking out favors for my Christmas Eve party. For me, all of these tasks are in my iPhone calendar reminding me with “ding, ding, ding” goes my iPhone! I have to be honest, if I did not plan the annual ornament swap dinner with my friends, we probably would never see each other over the holiday (shhh, do not tell them I said that). Organizing for the holidays consists of many things - calendars, toys, lights, decorations, outfits,

wrapping, dinner menu, etc. How do you get it all done? Make a list and yes, check it twice! Hang it up on the refrigerator so you have to look at it each day as reminder of what needs to be done so the holidays run smoothly. For instance, take a peak in the attic or basement in November and eye where the holiday decorations are stored. That avoids the ole “honey, I am in the attic, where did you store the large inflatable turkey to put in the yard?” Assessing early on where items are stored will help avoid all the questions of “where is the ……”

your lifeorganized

Menu Plan: I work on my menu plan early in December for my Christmas Eve dinner; taking into account the number of people I will be serving that evening. Christmas Eve is no time to over order on food. Remember, the next day you will be eating an entire new dinner!

Wrapping Supplies: As soon as the Christmas paper, gift tags and tape hit the shelves, I pick up the items and store it with my other wrapping paper. Sometimes I am invited to an early December Christmas party and it is a big help to have gift wrapping supplies on hand.

Outside Services: Are you working full-time and do not have time to shop and wrap? Do not rule out hiring somebody. You would be surprised how happy some people are choosing and wrapping other people’s gifts while making some pocket money!

Few more tips to help with your holidays:

Organizing For The Holidays!

by Susan Parziale

Susan Parziale is a certified Professional Organizer. She is also a mother to 8 year old daughter with Autism. Visit www.susanparziale.com

Photo Courtesy Heather Dirks

NOV/DEC 2012 31PARENTING SPECIAL NEEDS.ORG

Take a time out and use V isualization

Meditation to relax. Picture yourself here

amongst the magnificent

majestic mountains Feel the cool crisp air on your skin. Take a couple of

deep breaths and begin to

let go of any stress.

Awesome view from the top of the run... Durango, Colorado, USPhoto courtesy: runnr_az on Flickr

Mommy’s Time:

breathing space your life

“I can’t raise him alone,” my husband said. I had just returned from the doctor. She had started me on high blood pressure medication. Overweight and stressed out, my spouse was worried. This is an emotion that is foreign to my man. It was the first time in the 20 years of our relationship that we had talked about my health. Although I was touched by his concern, honestly, I was still somewhat in denial. The reality is that “taking control” is nothing new to parents of children with special needs. We put everything ahead of our own personal needs. Through this process we often lose control over our own health. At least that was the case for me. Before our son, Wyatt, turned 3, I knew I had to return to work. There were two reasons: First, I needed to stop beating myself up that I couldn’t “fix” my child. Secondly, I had to find a way to finance the intensive therapy not covered by insurance. It was a choice I made without a second thought. With the support of my husband and friends, I enrolled Wyatt in a Pre-K ESE program, and I landed a new career in non-profit management. The hard part, for Wyatt and me, was adjusting to our new

environments. In a word, it was,

“hell.” We were both scared, insecure and sleep deprived. Armed with a spirit of tenacity - we both eventually

persevered. Wyatt went on to thrive and become independent. Unfortunately, one of my greatest gains was nearly 30 pounds

in less than four years. In a defining moment, I took Wyatt to his first soccer practice. As I stood on the field, I turned to my right, and then my left. On one side there were fit and toned mommies, the other group, were very overweight parents. There I was in the middle. I doubted I could ever join the “yummy mummies,” but I also knew I did not want to resemble the “plus size” crowd the rest of my life. I realized that as much as I had controlled Wyatt’s life - I had lost control

of my own. I knew at that moment I wanted two things: my health and my groove. It was

less about vanity and more about getting off of blood pressure meds. I needed to make the

change for me and for my family. That was nearly three years ago and four dress sizes later. I achieved my goal and gained a balance in my life. I acquired a new group of friends and

titles. Besides being Wyatt’s mom and advocate - I am a runner, triathlete, and an Ironman. The greatest

gift, besides my son, is the return of my groove. I have achieved boundless energy and personal growth.


Written by Cynthia Carr Falardeau

THE GREATEST GIFT OF ALL Regaining Your Health & Your Groove

Here is what I have learned:I hope these tips give you and your family, the greatest gift - health and hip-ness!

1. Make it a family plan: The key is sustainability. I have found that when I get my family involved it keeps me moving in a positive direction from the way we eat to how we spend our time.

2. Set a goal - have a plan: I think the key is to define the path that is going to lead to your success. Define your steps; determine how you will overcome setbacks and how you will reward yourself.

3. Sign up for an event: Pick a 5K or a bike tour that will challenge you to keep training. I find this has been essential to maintaining my fitness. It’s even better when you can dedicate it to a cause or in memory of someone special. It becomes less about you and more about becoming a champion for a greater good.

4. Tell everyone = rally a cheering squad: When I sign up for an event I tell everyone. I end up finding support in unexpected places. These folks encourage me on Facebook, in emails, and in face-to-face conversations. There is no backing out once you broadcast it!

5. Name Your Cause or Workout Team:My friends and I have gotten hooked on doing triathlons. In the spirit of fun, we gave our group a name; we are the “TRI Divas!” The funny thing is that the name has become recognized in the community and no one ever challenges our credibility!

6. Celebrate your successes!The gift of health will reap emotional, physical, and financial gains for you that directly benefit your family. Feeling fit means you are a more effective advocate for your child - a priceless gift!


fitness fun & functional

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Recommendationsby Eric Cheesen, Autism Fitness.com

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health & fitness special diet


Recipes for the HolidaysWhile on a Special Diet November and December conjure up so many fond

thoughts and memories; wonderful smells are in the air, the stores and homes are filled with holiday decorations, people are looking forward to some time off, perhaps including traveling. The gathering of family members is being arranged in order to spend some quality time with loved ones and FOOD is being mentioned in many conversations.

When one has allergies or intolerances to food, it does not mean they have to go without! There are many wonderful recipes to be found online, and in cookbooks, to help make the holidays sparkle!

A favorite amongst children are sugar cookies that families can make, cut-out and decorate--and of course then eat!

{rolled out cookie recipe} 1 cup of margarine, softened

1 cup of sugar

1 large egg

1 tsp. vanilla extract

2 tsps. baking powder

3 cups GF flour mix*

*2 parts rice flour, 2/3 parts potato starch (NOT FLOUR),

1/3 part tapioca starch (or it can be bought already mixed)

1 tsp xanthan gum

Pre-heat oven to 400 degrees. In a large bowl, cream butter and sugar with electric mixer. Beat in egg and vanilla. Add baking powder and flour mix, one cup at a time, mixing after each addition. The dough will be very stiff, blend last

flour in by hand.

Do NOT chill dough. Divide dough into 2 balls. Sprinkle rice flour onto a flat surface. Roll each ball into a circle approximately 12 in. diameter and ¼ in. thick. Use cookie cutters as a guide. Dough should be only slightly thinner than cutter. Dip cutters into rice flour before each use. Bake cookies on ungreased cookie sheet, on middle rack of over for 6 to 10 min, or lightly browned. Once cooked

decorate with sprinkles, icing, candy, etc.

by Barrie Silberberg

Here are favorite recipes translated into GFCF/chemical free to enjoy with your loved ones.

I hope you enjoy the holidays with yourloved ones! ~Barrie p.s. Please print out the recipe cards as my gift to you.

Recipe Courtesy of Barrie Silberberg www.parentingspecialneedsmagazine

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on F

lickr

Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-by-Step

Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others

Interventions. Her web site is: www.puttingyourkidsfirst.com


{Sweet tips} Whole Foods and other health food stores, or companies online, have chemical free decorating items. Here are a few brands to look for: www.indiatree.com www.naturesflavors.com www.edwardandsons.com

Speaking of candy, what is a holiday without candy? It certainly does not need to be candy with chemicals. MANY companies online (and also available in healthier stores) carry many wonderful products. Here are some great companies who offer allergy and 100% natural, often organic, choices:www.collegefarmorganic.com www.yummyearth.com www.sunspire.com www.jellybelly.com (only some are dye free and GFCF) www.giambriscandy.com

You can also make your own candy. Buy healthy chocolate chips or bars and melt the chocolate with a tiny amount of cooking oil and stir. Get plastic molds from a craft store and pour the melted candy into the molds. Freeze for fast release. You can purchase lollipop sticks at the craft store to put into the chocolate, to make cute figurines on a stick.

{ Latkas } 3 to 4 potatoes

(Yukon Gold work best,

Russets will work, too)

2 to 3 Tbs, GF flour mix,

as needed.

1 egg

salt and pepper, to taste

oil for frying

Makes 4 to 6, depending on size

Grate potatoes in food processor. Use cheesecloth,

dishrag or strong paper towels to drain the liquid from

the potatoes over the sink. Put a few handfuls into the

cloth, cover, and ring out, squeezing well. Put drained

potatoes in a bowl. Continue until all potatoes are fully

grated and squeezed. Add other ingredients and mix.

Pour a good amount of oil into your frying pan. Form

balls and put into frying pan. Use spatula to flatten into

patties. Turn on heat and cook until brown, then flip

over and brown other side. Drain onto paper towels. Be

careful for flying grease. Add more oil, as needed.

{Corn Muffins} 1 cup GF cornmeal

½ cup white rice flour

(brown is ok, too)

½ cup cornstarch

2 Tbs plus 4 tsp. sugar

1 Tbs baking powder

1 tsp. xanthan gum

½ tsp. salt

2 large eggs

1 cup of alternative “milk”

¼ cup oil

PrePreheat oven to 400.

1. Combine all dry ingredients in a bowl.

2 .In a small bowl, slightly beat eggs, “milk” and oil to combine.

3. Add egg mixture to flour mixture and stir until batter is smooth.

4. Spoon batter into greased muffin tins, or use muffin papers, Fill about 2/3 to ¾ full. Smooth tops. Bake at 400 for 12 –15 minutes until done. Makes 12.

{Sweet Potato Souffle} Serves 4 to 6

2 lbs fresh sweet potatoes,

cooked, peeled and

mashed or canned (40 oz can)

2 eggs

½ stick margarine

½ tsp cinnamon

¼ tsp. nutmeg

½ cup “milk”

Combine above and put into a casserole. Bake at 350 for 35

to 40 minutes. Add topping-see below.

{ For topping}½ stick margarine

½ cup pecan pieces

½ cup brown sugar

1 cup crushed GFCF corn flakes

Cream margarine and sugar. Add remaining ingredients.

Spread on top. Bake an additional 15 minutes.

Sweet potatoes

Not only are they

GFCF, they are

loaded with fiber and

healthy nutrients!

GF flour mix**2 parts rice flour,

2/3 parts potato starch

(NOT FLOUR), 1/3 part tapioca

starch (or it can be bought

already mixed)

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Recipe Courtesy of Barrie Silberberg www.parentingspecialneedsmagazine

Recipe Courtesy of Barrie Silberberg www.parentingspecialneedsmagazine Recipe Courtesy of Barrie Silberberg www.parentingspecialneedsmagazine

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on F

lickr


In following the theme of celebration in this issue of PSN, I thought it appropriate to discuss how much progress my athletes have made.

Occasionally I will pull up some of their initial assessment videos (technology makes for a fine time machine) and marvel at the fact that Maxine can now attend to an activity for a full minute or that George has finally learned to squat without a full physical prompt. Sometimes it is important to appreciate the small daily victories. During my most recent seminar I made the point that most of the fitness activities my athletes perform are remedial. We are boosting very basic skills (squatting, throwing, pushing, pulling, stabilizing, attending to a task for more than 3 seconds, etc.). If physical activity was more prevalent for the autism population, I explained, I could bring my “A” game. More complex exercises and activities,

more creativity, more fun. Starting at the baseline of most individuals with autism, the goal is “merely” to build basic motor skills with some strength and stability,

increase their tolerance to new tasks, and find something, anything movement-related that could be potentially enjoyable. If I had to choose the phrase I hear the most in an average week, “I want a break” (spoken, signed, pointed-to on an icon) would have the high spot on the podium. As a contingency, following the Premack Principle, or the If/Then policy, all my

athletes work for breaks. Some of them have really, really earned those

breaks. Ten squats with a 20lb. Sandbell followed by 20 rope swings earns anyone a break. Some of them earn the break for developing the fortitude to stand on a pair of spot markers for more than two seconds and sustain attention. It’s all about the “continuum.” We are all on the Life Continuum. We have different skills and abilities and the autism population is no exception, save for that the social, communicative, cognitive, and physical deficits often make it difficult to figure out exactly what they can and cannot do, particularly when set against the backdrop of what they will or won’t do. How do I know if my athlete can do a decent medicine ball chest throw if they do not have the adaptive skills to attend long enough for me to present them with the opportunity to throw the freakin’ ball? But the neat thing is that over time, with the right programming, behavior support, and teaching strategies, my athletes have made remarkable progress, often surprising my expectations as well. For most of them, I can tell them how proud I am, but they may not stand in one spot long enough for me to delivery the entire message. I suppose I could do it in stages. Still, I can offer a break after they’ve completed the last rope swing or bear walk or hurdle hop or just stood around long enough to make eye contact. It’s a start. And once you have a start, opportunity arises.

by Eric Chessen, M.S., YCS

A nod to my Athletes with Autism.I Want Break!

fun fitness

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

more creativity, morebaseline of most inthe goal is “merely”skills with some str

increase their toltasks, and find smovement-relapotentially enjo

If I had tI hear the most“I want a breakpointed-to on athe high spot ocontingency, foPrinciple, or the

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a by

health & fitness

PARENTING SPECIAL NEEDS.ORGSEP/OCT 2012 39

It seems that sweets and the holidays go hand-in-hand as an American tradition.

Let’s face it, we are a society addicted to sugar in all of its forms. The brain releases mood-enhancing neurotransmitters, such as serotonin, that explains the connection of sugar to one’s emotions. When we consume an excessive amount of sugar, our body first stores it as glycogen. If we do not utilize this stored energy form in a timely fashion, then the sugar ends up getting stored as fat, in the form of triglycerides. It is important that youth learn good eating habits early on in order to prevent cavities and lifelong chronic illnesses. Coming off of Halloween and entering into Thanksgiving and Christmas poses itself as a challenge to tame the “sweet child”.

Here are some “HEALTHY HOLIDAY IDEAS” that you can encourage for your child:

You can make an assortment of tasty treats such as a warm apple pie, apple sauce or apple juice.

allergies or that the child is not a

young toddler, experiment with peanut butter in different foods. It contains 7 grams of protein in a serving of 2 tablespoons.

cookies with your child. This is a great opportunity to teach your child a lesson that “caring is sharing”. Children take pride in bringing a cookie to a teacher, neighbor, or as treats into a classroom for their peers.

something sweet as a gift during the holidays, give them something that is non-food related. Be aware that the gifts should be age appropriate. Various toys, especially small toys, jewelry and other small objects can be choking hazards for children under age 4.

Like “Save Your Kids Now” fan page on Facebook to receive daily updates. Be a part of this interactive community designed for both adults and children to discuss real issues pertaining to today’s youth along with practical solutions for any of today’s unique challenges. For more information on helping a child obtain overall SUPER HEALTH, please visit: www.douglashaddad.com.

“We don’t need sugar to live, and we don’t need it as a society.”

- Mehmet Oz (Cardiothoracic surgeon, author, television host)

by Douglas Haddad, Ph.D.

Douglas Haddad, Ph.D. (“Dr. Doug”) is a full-time public school teacher

in Connecticut and the author of parenting/

child guidance book Save Your Kids…Now! The

Revolutionary Guide To Helping Youth Conquer

Today’s Challenges and co-author of Top Ten Tips

For Tip Top Shape: Super Health Programs For All

Professional Fields.

super health

ALTERNATIVE SWEETSFor Your Child During The Holidays

hool teacher

Dh

health & fitness

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let’s get it togetherHOLiDaY GUiDeHOLiDaY GUiDe

Holidays are a time to get together with friends and family and gift giving is sometimes 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. Holidays are also a time of high emotions and we’ve discovered a tool to help children both express and understand their personal moods. Let’s take a look at gifts that deliver more than just fun to children with special needs.

This Year’s Toys Selected by Ellen Metrick, AblePlay/National Lekotek Center; Fun and Function; Parenting Special Needs


holiday gift guide holiday gift guide


MAGIC MOVESIce Breaker, Music Maker, Mover Shaker.

Magic Moves by Educational Insights looks like a microphone but acts like an activity director leading

the band, choreography and light show. Great way to get friends or cousins your child hasn’t seen in a while moving, grooving and giggling together. Offering 90 commands like ‘wiggle like a worm’ or ‘scamper like a squirrel,’ Magic Moves will get things hopping for the

holidays and make any gathering a party.

Price $19.99

KIWI CRATE Fun Art & Craft Kits for Kids. SThis sparks creativity and curiosity in kids and saves time for busy parents. Crates are designed around fun themes and filled with 2-3 carefully designed and kid-tested projects. All of the materials, mini-book, and inspiration are included for hands-on projects. The crates cover a range of developmental areas and subjects including art, science, and imaginative play. They also include a Messiness Meter, Grownup Involvement Meter and icons indicating the development areas covered in the activity. Kiwi crates are a subscription service and each month they deliver a crate/box addressed to the child. An added bonus is that kids love getting mail!Price $19.95/ month Free shipping

the perfect

GiFTSGiFTS

Win it!


This holiday give great gifts and help kids ‘get it together.’ Learn more about how these toys benefit children with special needs and other products at www.ableplay.org. AblePlay is a website sponsored by the nonprofit National Lekotek Center, an authority on products appropriate for children with disabilities at www.lekotet.org .

BEAMZ Amazing, Acoustical and Awesome. The Beamz by Beamz Interactive Inc. is an innovative, interactive music system triggered by interrupting laser beams. It requires no significant refined movement and can be activated with hands or other body parts. It has more musical genres than a disc jockey and boasts 12 different instruments, music clips and vocals to choose from. Bring it out for holiday gatherings and everyone will want to stay and play.

Price $249.95

KIMOCHIS Gentle Way to Teach Emotions. Many products teach cognitive skills, now there’s one for emotional skills as well. Kimochis by Plushy Feely Corp. has developed a comfortable way to teach children about their personal emotions and assist them

in communicating their feelings. These adorable fluffy stuffies come in a series of shapes from a cloud-like creature to friendly animals. Accompanying the comfy companions are small characters with a facial expression on one side and an emotion (happy, sad, silly, brave, etc.) printed on the other. These “pillow-people” are prompts for children to identify their feelings, communicate them and begin the important steps to process them appropriately. Also, these facial expressions help kids begin to read and relate to others’ emotions as well. Sets come with stuffed toy, small pillow people and a ‘feel guide’ to help parents jumpstart the process. A smart tool to start building emotional I.Q.

Price $24.99

LASER PEGSBrilliant Way to Build. Laser Pegs by Laser Pegs Ventures, LLC are a bright idea for a building set that combines lights and construction. Little builders can follow instructions and create suggested models or use their imaginations to create their own. Light up as you build or wait for the grand unveiling and switch it on at the end. Either way, Laser Pegs lights up kids faces with smiles!

Price $49.99

Win it!

W in it!

Selections available at www. fun and function.com

fun & functional

GiFTSGiFTS

AROMATHERAPY PUTTYKids and adults love the benefits of this Scented Putty that combines hand exercise, fine motor strengthening, sensory processing and aromatherapy into one great product. Scented Putty hand exercise material awakens the senses and makes hand therapy more pleasant for children. Perfect as a hand strengthener and for pre-writing skills or fidgeting needs. Keep some in their backpack, at a desk, with their teacher, in the car and just about anywhere they need to de-stress or awaken their fingers, hands and arms. Using scented putty is a fun way for children to develop grip strength and stay attentive. 2 ounce set with four scents (vanilla, cherry, banana and apple) in varying strengths from extra light to medium resistance.

Age 3+. Use with adult supervision. $20.99

HEAVY HERBERT WEIGHTED ANIMAL LAP PADHe’s a bit different, but that’s why kids love him! Heavy Herbert™ Weighted Animal Lap Pad is a soft and weighted companion that children adore. Our 5 pound Herbert can be hugged, lifted and carried for heavy work. Use Herbert as a lap pad to improve concentration during circle time and homework time. A calming companion, Herbert listens well when children read or talk to him in bed. Heavy Herbert supports sensory integration, speech and language, fine and gross motor skills and helps kids socialize too! He loves to travel with your child to school or the clinic, to visit friends and relatives and back home again. Spot clean with a damp cloth.

18”L and weighs 5 lbs. Age 3+. Adult Supervision Recommended. $39.99

cococoom

with

$39.99

ert rt

Win it!


the perfect

GiFTSGiFTS

ERGO-RITE BOOK STAND HOLDERPlace a book on the Ergo-Rite Book Stand Holder, and quickly improve concentration and body posture. Made of wood, the holder features an adjustable angle to tilt the book as it rests on the wide lip. An optional bungee string holds the pages in place. Ideal for children with sensory processing challenges, low tone, postural weakness and low reading endurance. Supports good organization skills as well. Portable for use in classrooms, clinics and at home -- especially during homework time. Children can personalize their boards with photos, notes or drawings (sealant adhesive not included). Handcrafted and designed in Woodstock, GA to meet special needs!

Measures 12”H x 15”W x 4”L. Age 3+. $54.99

SENSEEZ PILLOWDid you know that vibration can provide a filter for overstimulation? These colorful, lightweight, fun-shaped vinyl Senseez Pillows offer gentle vibration when they are squeezed or sat on. Kids that have trouble sitting for meals, stories, car rides, shopping trips, school work, movies, or anything else will be comforted by the vibrations of the Senseez. Perfect for falling fast asleep too! Easy-to-clean vinyl with pillows that are small enough to take anywhere. The pillows vibrate for a minimum of 30 continuous hours, with the use of premium D batteries.

Available in 3 shapes and colors. Age 3+. $64.99A

Sensational

MiraclesChristmas Sensational

MiraclesChristmas U ntil I had my

miracle girl, Jaimie,

I went crazy trying

to make Christmas

perfect. I spent days

baking goodies, doing

up the tree, preparing

the house in festive

decorations, then even

more hours creating a

delectable feast. It was

stressful, exhausting

and I never really got to

enjoy all the fun going

on in the next room.

After I had Jaimie,

though, those days

and hours of creating

perfection disappeared.

by Chynna Laird

Parenting SPecial needS.orgNOV/DEC 2012 47

Jaimie didn’t like flashing lights or brightly colored decorations or a big tree sitting in the middle of

our living room. She couldn’t handle the noise, the smells or the changes to the usual routine. And it took her many days after the big day to get over it. In fact, if we didn’t put our tree away the day after Christmas, she’d continue having sensory meltdowns until it was put away. And Santa? Forget about it. Even mentioning his name caused her distress. It was heartbreaking.

All I wanted to do was make the holidays perfect for my child, but her little body couldn’t handle anything about it. Then one Christmas, Jaimie reminded me in her own special way why we actually celebrate this glorious day.

When I was young, my grandfather hung a beautiful brass bell up on his mantle, right beside our stockings. It had a thick woven golden rope tied into a sparkly tassel on the end. There were three angels on its body: their wings spread wide, each holding a harp at her waist. The best part was winding the music key and hearing “Silent Night”. It played fast at first then gradually slowed down until the winding key stopped. The golden flames of the fire glowing from the fireplace waved across the angels making it appear they danced in time to the music. I rewound it over and over until my grandfather said, “Make that the last one, Dumplin’. Or you’ll tire ‘em out before Christmas Day.” After my grandfather passed away, I was given the precious bell. I hadn’t brought it out before because music of that pitch seemed to bother Jaimie. Since she’d been doing well with her auditory therapy that year, I decided to introduce it to her. As I unwrapped it from the bubble wrap, she was immediately entranced.

“Mama,” she said, staring at the bell with her big ocean-blue eyes. “Can I hang it up? I know a good spot.” I handed it to her, with a gentle warning to use both hands, and she hung it up on the mantle, right beside her stocking. “Wind it up?” she asked, noticing the key on the bottom. “Only if you think it won’t hurt your ears.”

She wound it up as tight as she could, then stood back and listened. Once the music stopped, Jaimie turned around and, to my surprise, gave me a hug. She’d been brave enough to give me one a few months earlier but they came so few and far between due to

her extremely high tactile issues I treasured them when they were given. As I wrapped my arms around her tiny body, she said, “Thanks, Mama. The angels’ singing makes my insides happy.” After that, I realized that’s all that matters. Who cares if the entire house isn’t spic-and-span? What does it matter if it takes over a week to get all the decorations and the tree up? And do we really need fifty different kinds of treats? What was most important, what makes Christmas perfect, is what each of us contribute to the holiday in our own way. And for our exceptional children, this is so important. The rest of the year, they are constantly reminded of what their struggles are. During this glorious time of year, they can simply be the miracles they are, and shine. My grandparents had always made Christmas perfect for me, no matter what else went on around us. It was perfect because they loved me. That’s all I needed. And it’s the same with our little miracles. We may never completely understand why they were given to us, but I think it’s because we need them as much as they need us. They teach us to be strong and remind us, each and every day, that we can never take things for granted. They don’t. So, as Christmas Day draws near, then comes, take a little time to celebrate your exceptional miracle and celebrate all that they are: Perfect in their own way. w

Chynna Laird – is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters Jaimie, Jordhan, and Sophie and son, Xander. Visit her at www.lilywolfwords.ca

All I wanted to do was make the

holidays perfect for my child, but her

little body couldn’t handle anything

about it.

Photo coutesy scottfeldstein on Flickr

PSN MARKET PLACE

learning activities

power of play

social skills


“Life is more fun if you

play games.” ~ Roald Dahl

fun & functional

Opening Presents Frankie Dean

Andrea (age 7) St. Albans, NY

Photo courtesy ofBelinda Andrea


Here we go again, another upcoming holiday season filled with lights, sounds and smells that give way to great memories. Of course, all of this stimulation and revelry

can seem daunting and trigger excited behavior. To enable your entire family to be calm, balanced, and healthy while enjoying the most wonderful time of the year, incorporate the following pose, breath and super food

Earth Angel, Earth Angel: One pose you can do both in the house, and possibly outside when it has snowed, is the angel pose. The goal is to stretch out the arms and legs while in a standing position. Or, lie on the ground and stretch out your entire body in the snow angel position many of us are familiar with from childhood. If your munchkin needs some assistance stretching out the arms and legs, let your child rest against your body while helping to stretch each limb. Then, as if everyone trying the pose had wings, flap those wings up and down over and over. Take a deep breath in when raising the arms high and exhale when dropping the arms down low. Bring the legs into the pose if you like. Just be sure to maintain focus on stretch and breath. It’s an ideal way to start any busy day or journey.

I Hear the Sleigh Bells Ringling: The sounds of the holidays can be deliriously engaging and exciting. To keep your child feeling in balance when new sounds come into play, try a buzzing breath. Ask your child to make a buzzing bee noise by putting just their lips together and humming. This helps manage output. Does your tyke have a favorite holiday tune? Encourage your child to buzz the song. Along with being calming, this is extremely fun during the holidays.

Happy holidays. I wish you all a Blessed New Year.

Hey Pumpkin: A super food that boosts immunity this time of year is pumpkin, which brims with zinc and vitamins K and B12. Savor the gourd

fresh or canned, mixing the flesh into anything. Maybe you’ll even serve it as pumpkin pie at the next holiday gathering. Either way, enjoy pumpkin while knowing it’s helping to keep your family healthy this season.

learning yoga

Silent nightHow to keep the peace during the holidays. by Kami Evans

Kami Evans is a Registered Yoga Teach and Children Registered Yoga Teacher, she is also a Family and Child Advocate and speaks at various events in the US and UK. Contact for more info 800-584-7940 or [email protected]

Angel Pose

Sukhasana Pose

Stretch &

Breath

fun & functional


Saftey Pin Necklaceby Barbara Sher

You might not think of safety pins as a good toy for children, but they can be. Learning how to make a large safety pin open and close takes concentrated effort. If it’s done right, there is enormous satisfaction. If done wrong, they know it right away. Ouch.

If your child is too uncomfortable with the possibility of getting poked, use paper clips instead. If they (and you) are up for the challenge, go for it. Learning takes risks.

DirectionsPlace the Get a packet of large size safety pins. Carefully show your learner how to open and close the pin. Make sure she is looking closely at the way the pin hooks behind the tip so it fits into the exact right spot in order to stay closed and how to squeeze the pin so that the point gets out from under the tip to open.Hook one safety pin into the bottom of another and close it. Take another pin and put it in the bottom of the last pin. Keep doing this until a chain is formed that can be worn as a necklace.

VariationsIf your safety-pin-necklace-maker is older, get a packet of small beads so that she can put the beads on the pins and make a fancier necklace.

BenefitsConcentrated and focused energy is practiced here as well as fine motor control. Add beads and you add creativity. Since they can wear their success as a necklace, they get to get admiration too.

This is an excerpt from Barbara Sher’s new book which is due out in the fall called:THE COMPLETE BOOK OF FUN AND EASY SOCIAL, MOTOR AND SENSORY GAMES.

Check out her site for more info: www.gameslady.com.

Barbara Sher M.A.,O.T.R, an occupational therapist and author of nine books on childrens games. Titles include EARLY INTERVENTION GAMES SPIRIT GAMES and EXTRAORDINARY PLAY WITH ORDINARY THINGS. Send request for workshops to [email protected] or www.gameslady.com

power of play fun & functional

A gift Kids can

make


“Foodie” Fun for Kids: Ham and Cheese Croissants

Ingredients makes

8 croissants1 Trader Joes Croissant Rolls (in the cold section, right next to the dough biscuits)

8 small cuts of cheese (any kind you want but I used a swiss variation

for this recipe)

4 slices of Ham

create, cook, Talk!

Encouraging Speech & Creating Yum!by Sarah Choueiry -Speech Foodie

Suggested crescent rolls

Family TraditionsWhen I was little, my Dad would take me every Sunday, with my brother, to the local bagel shop where they sold ham and cheese croissants. We would get it with chocolate milk, and use this tradition to begin every Sunday. One morning, I decided to recreate that yummy breakfast in my own home, and this is how this recipe came about! Make this recipe with your family on a Sunday morning or, if you are busy, it is a great breakfast on the go any morning!

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


InstructionsPreheat oven to the directions listed on the Croissant Rolls

Parent: Take out the Croissant dough from the package.

Kiddo: Put foil on a tray and spray it with spam/or any non-stick spray you use in your house.

Kiddo: Unroll the croissant doughs and separate them into individual squares onto the tray.

Parent: Cut up pieces of cheese, if you are using a block of cheese, OR grab slices of cheese. A nice thing about this dish, you can use whatever cheese you have in the fridge.

Kiddo: Place a piece of cheese on the top of each triangle.

Kiddo: Cut the ham slices in half and place each piece of ham on top of the cheese on the dough..

Kiddo: Roll up the dough, starting from the top (opposite the pointy bottom).

“Fun & Functional”

healthy, easy recipes

to make with your kids.

Look for them on

“ Foodie” Fun Friday’s

Parent: Place in the oven and set a timer for the minutes listed on the directions to normally cook the crois-sants, I think it is around 12 minutes (I forgot to check before I threw it away). Once all golden brown, it is ready to go.

Language Time: This is a great recipe to help encourage language!

Sequencing: This is a great activity for following directions and sequenc-ing steps. You can review the steps first with your kiddo, using the visual prompts on this page, and then create the recipe. Have them lead the recipe, it’s ok if they make a mistake, just help guide them on how to create these yummy treats!

ASK Angie ASL - Holiday Season

by Angie Craft

learning to sign

VIDEO DEOSTRATION: This video demonstrates the ASL signs for common words used throughout Thanksgiving and the Holidays. Words included in video:ThanksGiving, Turkey Day, Santa Claus,, Christmas, Kwanzaa, Hanakkah, Memorah, reindeer, gifts or presents.

Tip for working with the deaf

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

My wish for you this holiday season is love, joy and peace.

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


Holidays

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

For more information: follow us on FaceBook @ HandCraftEdASL

fun & functional

L. M

arie

/Flic

kr/C

C

Thanksgiving

Hanukkah

Christmas

Holidays


{holiday moments}

Happy Smiles Christmas finally brought big smiles to Ronan (age 10 with Asperger Syn-drome) posing here with mom and his baby sister Kiki (age 8) Each year he gets really stressed and cries through the holiday season, not this year :) Happy smiles for the whole holidays... A perfect gift to me

~Judy, Proud Mom

Snaps of our Life, the good

the bad, the awesome. My 4

year old daughter, Lauren (Down Syndrome),

hugging her 4 month old niece before

Christmas dinner.

~Beth Hardinger, Proud Mom

Chrismas Eve Moments Our favorite tradition is church on Christmas

Eve and then opening one present and after-

wards reading the story out of the Bible.

~Jason and Shelly Townley, Proud Parents

Favorite Holiday Moment Christmas morning, Grace Hope, (age 2 1/2 CHARGE Syndrome; Pierre Robin Sequence) loved playing with the tissue paper more than toys

~Renee Pickwoad, Proud Mom

Thumbs UpTO ALL OUR PARTNERS, HELPING US TOUNITE THE SPECIAL NEEDS COMMUNITY

To inquire about becoming a PSN Partner for PSN Parents, email: [email protected]

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