Chicago Special Parent Winter 2016

Spec覺alParent CHICAGO

WINTER 2016

AN EMPOWERMENT GUIDE FROM

CLAIM REJECTED? What to do

15 spots to play

The search for answers

Families find new paths SP_Cover_Winter2016.indd 5

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SPECIAL RECREATION: Your child will explore whole new worlds!

• Adaptive Sports • Aquatics • Cultural Arts • Field Trips

• Inclusion • Paralympic Sports • Social Clubs • Special Events • Special Olympics

• Summer Camps • Unified Sports • Vacation Trips • Weekly Programs

Providing programs that will enhance socialization skills, improve self-help skills, build self-esteem, and develop fine and gross motor skills.

The Special Recreation Network of Illinois (SRANI) provides information on the 34 cooperative agencies throughout Illinois called Special Recreation Associations (SRAs).

These SRAs deliver a variety of community-based recreation services to children, teens and adults with disabilities through a cooperative agreement with their member park districts and recreation agencies. For a statewide listing of SRANI agencies, see our display ad in the Resource Directory or visit www.specialrecreation.org.

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| ChicagoParent.com

2/4/16 10:39 AM

Comprehensive In Home ABA Programs for Children with Autism

Steinberg Behavior Solutions has a strong team of BCBAs and direct therapists to ensure that your child receives the highest quality of evidenced based therapy.

Weekly team meetings with your BCBA to closely monitor progress.

SBS addresses ALL areas of development including: • • • • • • • • •

Receptive and Expressive Language Fine and Gross Motor Skills Visual Perception and Matching Skills Motor and Vocal Imitation Feeding Therapy Sleep Consultations Social Skills Parent coaching Sibling social interaction

SBS also provides school services including: • 1:1 shadow aides in school • School IEP consultations • School Behavior Plans and curriculum modification SBS uses electronic HIPAA secure technology to record data on your child’s progress that you can access anytime.

In-Network with insurance • Direct billing

Call now for your FREE consultation (847) 676-5398 www.SBSABA.com • info@sbsaba.com

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facebook.com/SteinbergBehaviorSolutions

twitter.com/childbehaviors

2/5/16 10:39 AM

Inside

IN OUR SHOES

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10 My life: Teenage rebellion 11 My life: Zoo camp works 12 My life: My son has autism

13 Day of Play 14 News you can use 18 Products to try

FEATURES 18

Get out and go

RESOURCES

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There’s fun to be had throughout Chicago and the suburbs

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Special challenges for dads Moms and dads often react differently with a special needs diagnosis

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A dad’s letter to others Advice for when life is no longer typical

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Denied 13 ways to get claims for your child’s treatment approved and paid

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The search for answers

INSPIRATIONS 46 Nicole Minassian is Miss Amazing

How to survive a dual diagnosis

ON THE COVER Finnegan J. Gallagher, 4, of Chicago Photographer: Thomas Kubik, TK Photography Design: Claire Innes

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Finn’s favorite things Favorite food: Oreo pancakes Favorite activities: Running, playing hide and seek and swinging Favorite toy: His stuffed Sully from Monsters Inc. Favorite bedtime book: No, David!

| ChicagoParent.com

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At Shriners Hospitals for Children — Chicago our mission is simple: deliver world-class care to children who need it most – whether their families can afford it or not.

For 90 years we’ve specialized in helping children affected by orthopaedic conditions, cleft lip and palate, spinal cord injury, and rehabilitation needs.

And while expertise, dedication and generosity make it all possible, we believe our hospital is fueled by love. That love is what helped the Shriners network of 22 locations treat over 127,000 children last year alone, helping them at every step as they made the journey from patients back to kids.

shrinershospitalsforchildren.org/chicago facebook.com/shrinerschicago twitter.com/shrinerschicago

Do You Know a Child For a consultation, or to refer a patient, call: Who Needs Expert Shriners Hospitals for Children — Chicago Specialty Care? 773-385-KIDS (5437) 2211 N. Oak Park Ave., Chicago, IL 60707

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FROM THE EDITORS

We’re here for you W ith the ongoing state budget problems still threatening services for those with special needs, it is especially crucial that the treatments and therapies your child needs get covered by insurance.

So when we met TAMARA L. with a few of our O’SHAUGHNESSY Special Parent adviEditor sory board members, Cara Long and Ahren Hoffman, at Easter Seals DuPage and the Fox Valley in Villa Park to brainstorm ideas for this issue, it became clear we needed to share ways to help you do that.

The tips Long, a long-time parent liaison who knows her way around insurance blockades, and other experts share on page 25 are really good reminders to document, document, document, plus new ideas to try if you

are struggling with payments.

We also want to give you some ideas to have fun where, in most cases, that fun is free. On page 18, you’ll find that libraries, such as the Skokie Public Library, are really stepping up to makee families with speciall ELIZABETH DIFFIN needs not only feel Editor welcomed, but feel embraced. There’s a consortium of librarians working together to create even more programming, so make sure you let your local library know what would interest your family.

We think you’ll also enjoy meeting our cover boy, Finnegan, and will be touched by an open letter to families with special needs written by one dad, Chad Olson.

Your ability to manage juggling finances,

Get special needs info every month!

Sign up for our special needs newsletter at ChicagoParent.com/newsletters. therapies and family life with positivity and determination always amazes us. That’s why we want this magazine—from the stories to the advertisements to the resources—to make a difference in your life. Please let us know how we can help.

OUR ADVISORY BOARD

MARIAN CASEY is the executive director of A.S.K- Answers for Special Kids, a resource and advocacy organization that serves the needs of parents of children with special needs throughout northeastern Illinois. She is an attorney, active on a number of community boards, and the mother of a child with special needs.

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SHEEBA DANIELCROTTY, Ph.D., is a clinical psychologist who focuses on child, adolescent and family psychotherapy and evaluation.

She specializes in the assessment and treatment of neurobehavioral disorders, learning disabilities and socialemotional problems.

CARA LONG, a registered nurse and a mom of three, including one born with Down syndrome, is a state-credentialed parent liaison at Easter Seals DuPage and the Fox Valley Region. She has worked with families as a support parent and public awareness speaker for the National Association for Down Syndrome.

AHREN HOFFMAN is manager of Industry Relations & Partnerships at National Lekotek Center. She is a certified therapeutic recreation specialist who has evaluated thousands of toys and play products through the National Parenting Publications Awards, Toys R Us Toy Guide for Differently-abled Kids and AblePlay.org.

LARRY REINER, Ed.D. CPRP, with a doctoral degree in counseling, adult and higher education, is executive director of the Northeast DuPage Special Recreation Association. He is highly regarded for leadership in creating recreation opportunities for kids and adults with special needs.

DR. ALAN ROSENBLATT is a specialist in neurodevelopmental pediatrics who has been involved in medical care, advocacy and education efforts on behalf of children with special needs and their families at the local, state and national levels.

| ChicagoParent.com

2/4/16 1:01 PM

Learning for a Lifetime.

ELMHURST LEARNING AND SUCCESS ACADEMY (ELSA)

College-like experience for young adults with disabilities.

Elmhurst College offers an excellent post-secondary experience for students with developmental disabilities— taught on our beautiful campus in Elmhurst, Illinois.

Students in this four-year certificate program, who are between the ages of 18 and 28 and who have earned a high school diploma or certificate of completion, learn and grow in three key areas: • Academics and Career Exploration • Independent Living Skills • Social and Recreational Skills Students receive first-rate instruction from Elmhurst College faculty and staff. The goal: to work productively and live as independently as possible.

ELSA Information Session and Transition Fair Wednesday, February 24, 6:00 p.m.

Frick Center, Elmhurst College RSVP: elmhurst.edu/visit/elsa Learn more.

Call: (630) 617-3752 Email: elsa@elmhurst.edu Visit: elmhurst.edu/elsa Follow us on facebook.com/ELSAelmhurst

On-campus housing is now available for ELSA students!

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STAFF

Students Flourish at Cove

EDITORS Elizabeth Diffin, Tamara L. O’Shaughnessy

.com community

calendar education

babies web extras

family museums

ART DIRECTOR Claire Innes EDITORIAL DESIGNERS Jacquinete Baldwin, Javier Govea ASSISTANT EDITOR Emily Adams DIGITAL EDITOR Jackie McGoey CONTRIBUTING WRITERS Danielle Braff, Jerry Davich, Megan Murray Elsener, Cheryl Eugenio DISPLAY AD SALES Annette Coffee, Dawn Engelhardt, Erika Goodman, Lourdes Nicholls, Alicia Plomin, Karen Skinner SALES AND MARKETING COORDINATOR Kamil Brady IT AND DIGITAL DEVELOPER Mike Risher AD PRODUCTION MANAGER Philip Soell AD DESIGN MANAGER Andrew Mead AD DESIGN Debbie Becker, Mark Moroney CIRCULATION MANAGER Jill Wagner DISTRIBUTION COORDINATOR Shanez Hudson BUSINESS MANAGER Joyce Minich CREDIT MANAGER Laurie Myers COLLECTIONS Charlie Kelly

Students at The Cove School benefit from our intensive individualized instruction and highly specialized team, while learning in an environment that is specifically designed for students with learning disabilities.

Cove students are fully integrated in their school environment, participating in arts, athletics, college counseling, job training and authentic leadership opportunities.

If you know of a student that could benefit from the exceptional and individualized K-12 program at Cove, contact Dr. Sally Sover, Executive Director, at 847.562.2100 or ssover@coveschool.org.

Join us at our next Open House on Wednesday, April 13, 2016 RSVP to spritzker@coveschool.org 350 Lee Road Northbrook, IL 60062 847.562.2100 Fax 847.562.2112 www.coveschool.org

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party planning

______

special needs

COMPTROLLER Ed Panschar

PUBLISHER Dan Haley

travel Weekend Scoop

CP rEwards ...and much more!

Visit us today.

CONTACT PHONE (708) 386-5555 FAX (708) 524-0447 EDITORIAL chiparent@chicagoparent.com DISPLAY ADS advertising@chicagoparent.com CLASSIFIED ADS classified@chicagoparent.com CIRCULATION circulation@wjinc.com WEBSITE ChicagoParent.com Our offices are at 141 S. Oak Park Ave., Oak Park, Illinois 60302.

Office hours for all departments are 9 a.m. to 3 p.m. © 2016 Wednesday Journal, Inc. All rights reserved.

| ChicagoParent.com

2/4/16 11:23 AM

In Our Shoes

An unexpected place for fun

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ou might not immediately put an art festival on your to-do list as a family, but the mom behind creating those festivals in the Chicago area has ideas to make them fun for everyone in your family, especially your child with special needs.

Amy Amdur, president and CEO of Amdur Productions and mom of two, says her experience working with children with special needs has helped her create a festival they would enjoy.

“Being a mom has given me a firsthand experience on what it is like to take a child to an art festival,” she says. As a result, she believes motherhood has made the festivals better.

Here are her tips for enjoying one of the 41 art festivals she is planning this summer: u Call ahead of your visit, (847) 926-4300. Amdur says her staff will arrange special one-on-one experiences with artists at the event.

“Artists want to share their art with all kinds of people and especially with children. We have the ability to create really major moving experiences for families,” she says. u Go early in the day. Crowds are hard with children and harder still when you have a child in a stroller or wheelchair. If that doesn’t work for your family, go for the last hour of the festival.

u Bring water and snacks. Even though the festivals have food, hunger might strike at any time. u Check out the festival program and map online. This will help determine which festivals might be the best size for your family. u Play games. Games make the festival more interactive and allow parents to spend more time enjoying the art. Amdur suggests a “Color Hunt” along the lines of Where’s Waldo, or an animal or object hunt that appeals to your child’s interests.

“It becomes a real treasure hunt,” she says. “It makes the festival a game.”

She also has created an art festival bingo for families to do together.

Bingo cards are available at the

festival or can be downloaded at amdurproductions.com u Mix it up. Break up visits to artist booths with watching art demonstrations and taking part in the free hands-on art projects in the youth art area. Amdur says the art projects let everyone feel successful with art. u Follow up. If the festival really sparks an interest, try out an art class or two.

“Art is non-verbal communication.

Especially for kids with special needs, I think art is something that can touch them and that they can experience and enjoy,” she says. “This is a ‘typical’ family experience. ... Sometimes with special needs kids, there are enough challenges in life. It’s good to do the other things.”

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2/4/16 1:01 PM

MY LIFE

Teenage rebellion Was it autism, hormones or a lesson that needed to be learned?

BY GERI JOHNSON

S

hortly after the start of her freshman year in high school, my daughter, Erin, who is on the autism spectrum, needed to learn a lesson in time management.

One Friday afternoon, Erin came home with a lot of homework that was due on Monday. Being in high school now, homework is harder and takes longer to do. She did no homework on Friday, no homework on Saturday and no homework most of Sunday. I kept asking her when she was going to start it and her reply was “later.”

Around 7 p.m. Sunday, knowing she had hours of work to get done, I decided to step in.

So I said, “Erin, you need to practice your violin and take a shower before bed in addition to all your homework.” Her reply was “Sure.” By 11 p.m., she still wasn’t done. I

told her I was tired and going to bed, but left her with this message: “This is what happens when you put things off. I don’t care if you stay up till 2 in the morning, you have to finish your homework, practice your violin, take a shower and you’re still getting up at 6!”

Her reply was “Fine.” I went to bed, and I swear I could hear violin music in my sleep.

I have no idea what time she finally went to bed.

When I got up at 6 a.m., I went into her room only to find a note on her bed. My first thought was she ran away. It simply said, “I’m sleeping on the couch!” Relieved, I went downstairs and woke her up. Then I asked her why she slept on the couch.

Erin said, thoughtfully and slowly, “I’m not really sure, but I think I was trying to rebel, but only about this much,” measuring about

an inch of space between her thumb and forefinger.

I couldn’t help but laugh.

Then I asked why. Erin simply said, “You told me I had to finish my homework, you told me I had to practice the violin and you told me I had to take a shower, but you didn’t say I had to sleep in my bed!”

If that’s how she rebels, then I have nothing to worry about. And she never procrastinated again!

Geri Johnson lives in the suburbs with her family.

VILLA PARK NAPERVILLE ELGIN

bright start, brighter future

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physical therapy | occupational therapy | speech-language therapy | aquatic therapy | nutrition | assistive technology medical diagnostic clinic | tele-therapy | community-based therapy | hearing services | inclusive child care | social work 10

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2/4/16 1:01 PM

MY LIFE

Special Needs Planning & Estate Planning

“

Parents must constantly navigate multiple complex systems. We understand what it is like to be overwhelmed – we, too, are parents of special needs children.

Zoo Camp works

”

- Katie Clancy Attorney

Brookfield Zoo makes summer camp inclusive and fun

BY DAVID PERRY

O

n day one of Zoo Camp, Nico touched a baby goat.

Although my son loves animals, he had been too fearful to get close to them, so this was a pretty big step. What he wouldn’t do, unfortunately, was sit with the other kids in his group for lunch.

When I dropped him off on day two, one of his counselors sprang toward me, smiling, with a new plan. Instead of trying to bring Nico to a crowded table, she’d ask him to sit down first and then bring the other children around him. It worked.

Welcome to the all-inclusive, creative Brookfield Zoo camp.

Nico has Down syndrome.

Too often, parents looking for summer recreation activities for children with disabilities are

Camp time! u For a list of great camps, check out the camps in resources (page 34) and online at ChicagoParent.com u The Special Recreation Association Network of Illinois, specialrecreation. org, is another good place to start to find your local special recreation district

presented with two options: A segregated camp only for kids with disabilities or an integrated camp ill-prepared to address the needs of our children.

We’ve tried both. The latter is a disaster (and potentially dangerous). The former, when run by Special Recreation Associations, is wonderful. But the one thing they don’t do, by definition, is offer chances for inclusive play.

Children, with and without disabilities, learn so much from each other, and when done right, everybody wins.

While schools are generally more inclusive now, summer can be a very isolating time for families like ours.

Camp provides specific challenges, and the easy way out is to create a segregated unit for kids with disabilities, isolating them from the general population.

Brookfield Zoo chose something more difficult and meaningful— full inclusion. They partnered with the National Inclusion Project in order to train all of their counselors in adaptive play.

Each counselor is encouraged to learn about neurodiversity, accommodation and the creativity needed to make an activity work for every single child.

That’s just what I witnessed on day two of the camp. A

Brookfield Zoo Camp u Dates being finalized at presstime, visit czs.org/ Brookfield ZOO/Learning/ Zoo Camp

(773) 929-9000 ClancyAssociates.com

counselor had identified a problem—Nico self-isolating during lunch—and was taking the initiative to offer a solution.

When I arrived to pick up my children (I also have a younger neurotypical daughter in the camp), I couldn’t see Nico at first because he was right in the center of the throng, playing with a ball at a table with a counselor and a bunch of other campers.

He was laughing. I felt tears come to my eyes.

Inclusion works.

During that first week, he played with slugs and lizards, made new friends with counselors and campers alike, and I found him happily surrounded by other children at the end of every day.

On the first day of week two, he tried to go into the wallaby enclosure. Maybe they got him a little too comfortable with all the animals...

David Perry is a freelance writer, professor and Chicago-area parent of two children.

ChicagoParent.com |

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2/4/16 1:01 PM

MY LIFE

My son has autism Life lessons from Charlie Besser

BY DAVID WALLACH

P

eople in the business world know Charlie Besser—founder, president and CEO at Intersport in Chicago—as a no-nonsense negotiator who doesn’t settle for second best. In his private life, Besser is a father of five, one of whom has special needs.

He also happened to be my boss, and in April, I told him I needed to see him in his office.

As we walked, Besser was unaware I wanted to talk to him not about business, but about parenting.

Maybe it’s because he shares a name with my son, but once in his office, I began to cry.

“My son was diagnosed with autism.” I began to sob as I said it again, “My son was diagnosed with autism and I have no fu**ing idea what to do!”

This is the point where “Besser the businessman” became “Besser the father.”

I explained how we had been going through tests, tests and more tests. I explained that my wife and I needed to declare that Charlie had autism to get the early intervention services he needed. I explained how I felt like this was somehow my fault, that I felt was a failure as a parent.

Besser listened and then shared words I needed to hear: “You do and say anything you can to help your son. If you have to declare he

has seven noses and flies, then that’s what you do. Your job, your mission, your new goal in life, is to make sure your son has all the help he can possibly get and that you are always there to support him.”

Besser offered me help, phone numbers, even had his wife call my wife. He assured me that the “diagnosis” is a starting point; now we could build on that for a better life for our son.

Besser taught me so much during our conversation, but the one thing that rings in my ears is this: “Words are words; it’s your actions as a parent that matter. Set your pride aside and do what you have to. If you do that, you will never have regret.”

At the beginning of June, my Charlie couldn’t say “Daddy” or look into my eyes. On a early October morning, he looked me in the eye, pointed and said, “That’s my daddy.”

He is still the same beautiful, funny, happy little boy he was before the diagnosis and the only one who doesn’t know he has “autism.”

My son has autism. He is still the same beautiful, funny, happy little boy he was before the diagnosis and the only one who doesn’t know he has “autism.”

Note: Although I no longer work for Besser, he and his wife continue to offer support to my family and countless others through their charitable involvement with Misericordia and other great causes.

SIBSENSATIONS PROGRAM FOR SIBS OF KIDS WITH SPECIAL NEEDS

SIBSENSATIONS gives siblings (ages 8-13) of children with special needs a chance to meet peers in a fun, friendly setting where they can share common joys and concerns. Through games, activities and discussions, they will form friendships, learn about disabilities and discover how to handle tough situations they all face.

847/392-2848 www.nwsra.org

PROVIDING OUTSTANDING RECREATIONAL PROGRAMS FOR CHILDREN AND ADULTS WITH DISABILITIES!

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When:

Saturdays: 9:00 a.m. – 11:30 a.m.

Monthly meetings, please call for upcoming dates

Cost:

$10.00 per session, registration is required.

Where:

acktman Children’s Pavilion Y 1675 Dempster-Park Ridge, IL

Contact:

Kathryn Smart MS RN, 847-723-9484 Kathryn.smart@advocatehealth.com

| ChicagoParent.com 1/19/2016 10:47:25 AM

2/4/16 1:02 PM

DAY OF PLAY

Play the artsy way

BY AHREN HOFFMAN

E

very day our kids are experiencing the world: seeing, touching, smelling, hearing and building perceptions. All of these experiences are stored in the mind, just waiting to be expressed.

Art can be an effective form of expression. Giving freedom to create also enriches essential life skills such as collaboration, communication and cognition.

Get your pencils sharpened and the paint brushes cleaned, because we are sharing some of our favorite ideas for kids (and adults!) to create and express. Here are some play tips for enjoying a day of play the artsy way.

Make a meal a work of art Have you ever noticed that a dinner plate looks kind of like an artist’s paint palette? Well you can bet children have. Let your child be an edible artist with breakfast by making a “dip”-friendly meal. Use different foods such as honey, yogurt and syrup to dip apple slices and French toast sticks. Plus, kids can use fruit to make faces on their pancakes, with banana smiles and blueberry eyes!

If breakfast is not your child’s favorite meal, kids can be creative at lunch and dinner, too. Ketchup, honey mustard and salad dressing can be used to paint chicken nuggets tomato red and carrot sticks ranch dressing white.

Other artistic ideas for the creative culinarians can be helping design a tablescape, plating the food, making placecards or illustrating homemade menu cards.

Let the world be their canvas

Children are very resourceful when given a task. Let kids figure out a way to use items in their environment as their paints and canvas outside. Perhaps they will build a house with sticks? Maybe they will mix food coloring into the snow?

Maybe a sand castle will be their creation? There are so many

ways to interact with nature that children will be able to create no matter what the season.

If you want to bring nature indoors, there are several artistic mediums that give all of the excitement but none (well maybe some) of the cleanup. Waba Fun’s Kinetic Sand is tactilely inspiring for building castles of all shapes and sizes. Other products that provide messfree expression include For more informa tion on play products for kids, visit ableplay. org. AblePlay is a website sponsored by the National Lekotek Center, an author ity on play and children all abilities at lekotek.org.

Aquadoodle by TOMY, Boogie Board by Kent Displays, and a mess-free line of products from Crayola.

Bedtime=time to work together

Fun and wholesome playtime often inspires opportunities for bonding. Parents, that’s you!

There are plenty of ways you

can create art together with your child, one of which is creating your own whimsical storybook.

The child can be in charge of either the story or the illustrating, and you the other. Laugh together at bedtime when you read the silly stories from your creations.

As children drift off into la-la land after all the day’s activities, their minds will be full of fun from

their day of play the artsy way.

Inspired by all the different forms that art can take, children can see that creativity can be applied to all parts of life, from breakfast to bedtime.

Ahren Hoffman is manager of Industry Relations & Partnerships at National Lekotek Center and a member of the Chicago Special Parent advisory board.

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2/4/16 10:45 AM

NEWS YOU CAN USE

COMPILED BY MEGAN MURRAY ELSENER

JCC Chicago offers new aquatics inclusion program

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he Jewish Community Centers of Chicago recently launched All-in Swim, a new aquatics inclusion program designed specifically to meet the needs of children and adults diagnosed with Autism Spectrum Disorder.

JCC Chicago is known as one of the most successful swim instruction programs in Chicago through its Lenny Krayzelburg Swim Academy, but employees noticed a gap in water safety and programs available to the autism community.

For children with ASD, swimming and water exercise therapy promotes health while minimizing behaviors that interfere with learning.

All-in Swim lessons are done with positive reinforcement, clear goals and expectations, plus rewards. Each student has a 30-minute evaluation and is placed into one of three class option: 30-minute private lessons, a small group lesson with a one-to-two ratio, or integrated into the swim academy group lessons with a one-to-four ratio.

For more information, visit gojcc.org.

AbleGamers launches fellowship The AbleGamers Charity, which ch works to improve the quality of life for those with dis abilities through the power of video games, has now gone one step farther to include ude those with disabilities in game e development.

The AbleGamers Fellowship is a new program awarding a $10,000 scholar ship to qualifying third and fourth year college students with disabilities,

majoring in a game development major based degree, computer science base or education with a focus oon gaming/media from aan accredited college or university. u Winners will receive mentor W ing from the game accessibility experts at AbleGamers and paid internships with the industry’s leading game publishers.

Learn more at ablegamersfellowship.com.

New growth chart for kids with Down syndrome For the first time since 1988, pediatric researchers have developed a new set of growth charts for chil dren with Down syndrome. The new charts allow pediatricians to evaluate growth milestones and compare each patient’s growth patterns with peers of the same age and sex who have Down syndrome.

“Growth is a good indicator of a child’s health and well being, so it’s an essential part of the pediat ric examination,” says Babette S. Zemel, Ph.D., director of the Nutrition and Growth Laboratory at The Children’s Hospital of Philadelphia. “Children with Down syndrome grow differently from other children, so it is important to have growth charts that reflect their unique growth pattern.”

Summit set to promote sensory offerings A group of parents and cultural orga nizations are teaming up April 12 to offer the city’s first Sensory Friendly Summit created to help more cultural organizations learn how to accommo date visitors with sensory issues.

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The summit, offered by the Chicago Cultural Accessibility Consortium and SPD Parent Zone, hopes to make Chicago the most sensory friendly city, SPD Parent Zone President Kelly Jurecko wrote in a release.

| ChicagoParent.com

2/4/16 10:46 AM

NEWS YOU CAN USE

COMPILED BY MEGAN MURRAY ELSENER

Sesame Workshop launches autism education initiative For more than 45 years, Sesame Workshop’s mission has been to serve the world’s most vulner able children, to make them smarter, stronger and kinder.

Now it’s made another major step by launching an initiative to de stigmatize autism.

The See Amazing in All Children campaign, which includes new character Julia, provides resources to families, teachers and caregivers to educate them about autism, and tools to help families touched by autism.

The digital content available at SesameStreet.org/Autism includes guides to simplify activities and overcome common

challenges such as brushing teeth, going to the store and establishing bedtime routines.

There is an iPad app, as well as the responsive website designed with adaptations such as larger buttons, audio off options and the ability for children to cus tomize content. There are digital storybooks, tips for parents, new videos and much more.

“This project is an extension of the belief we’ve always promoted: we are all different, but all the same,” says Sherrie Westin, executive vice president, Global Impact and Philanthropy at Sesame Workshop.

®

UNLOCK YOUR CHILD’S GREATEST POTENTIAL WITH SUPPORTIVE COUNSELING Children, Teens and Young Adult Therapy Immediate Openings Counseling Services Include: • Neuropsychological and

• Anxiety and Depression

Psychological Testing • Autism Spectrum Disorders

• Chronic Medical Illness and Disabilities

• Behavioral/Discipline Problems

• School and Peer Problems

• ADHD

• Parent Coaching

Chicago • Oak Park

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NEWS YOU CAN USE

Resources all in one place Annual Developmental Differences Resource Fair March 13

F

or the fifth year, Neighborhood Parents Network is hosting its annual Developmental Differences Resource Fair.

The fair is geared to families with children through eighth grade, and includes all developmental delays, autism, physical disabilities, sensory processing disorders and ADD/ADHD. “Having a child that has been diagnosed with any developmental difference can be overwhelming, and many parents don’t know where to start, let alone what kind of services are even available,” says Christa Reed, NPN’s associate executive director.

“NPN brings the right resources together under one roof, giving families a place to start or fill in the gaps,” she says.

u Free u For more information, visit npnparents.org/events/2372

“This year we’re incorporating more focus on education and the dynamics of a successful inclusive classroom as well as alternative treatments and therapies.”

The specific workshops this year include Beyond Traditional Therapies: Alternative Treatments; You’ve Got a Diagnosis: Now What?; and Helping Your Child Succeed in the Classroom.

One of the presenting sponsors is Heather Bragg, founder of Learning Decoded.

“I plan to present a step-bystep process that guides parents though understanding their child’s learning strengths and challenges, so they can support, teach and advocate for their child effectively,” she says.

NPN suggests making the

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resource fair an adult-only event, but families with children will not be turned away.

“The Developmental Differences Resource Fair not only gives parents information, but also the sense of community that can empower and support them as they work to empower and support their children,” Bragg says.

Chicago Special Parent will have a table at the fair to meet families.

t i c u Y e o p ga! a r e h T

Has your child been diagnosed or do you suspect that your child has a learning disability?

Like us at Learning Disabilities Association of Illinois on

u 10 a.m. 2 p.m. March 13 u DePaul College Prep, 3633 N. California Ave., Chicago

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For more information and to register, contact Meredith White at 847.412.4336 or MeredithWhite@jcfs.org

Northbrook and Chicago

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Jewish Child & Family Services is a partner with the Jewish United Fund in serving our community. 1.2016

| ChicagoParent.com

2/4/16 10:46 AM

PRODUCTS TO TRY

COMPILED BY MEGAN MURRAY ELSENER

Chicago mom creates desk for kids with special needs

W

hen Nancy Dellamore’s son was diagnosed with dyslexia at 7, his teachers were frustrated by his fidgeting and swinging feet. They wanted him to sit still, but he couldn’t.

Frustrated and heartbroken, Dellamore set out to create a solution for her son and other children with learning differences. With research proving that moderate physical movement helps children concentrate, she knew there was a better option.

Designed with teachers and students at the University of Chicago Hyde Park Day School, the Marvel Focus Desk was created as a unique sit-and-stand desk that provides a non-disruptive outlet for natural movement.

It allows kids to move from sitting to

standing without disrupting other students.

It also promotes better organization with integrated file folders, divided storage compartments and drop-leaf shelves for an expanded work surface.

It is not just for special needs, however.

“There’s a real paradigm shift going on in classrooms,” Dellamore says. “Educators are looking for tools that allow students to stand and move around during the day to improve concentration and also fight childhood obesity.

“The need to move is something the special needs community has understood for a long time, and the benefits for the general population are just starting to be recognized,” she says. “The Focus Desk represents the outside-the-box thinking that will reinvent the classroom of the future.” $425, marvelfocusdesk.com

Safety bracelets aid with wander ing prevention Wandering is common and often frightening for parents of children with autism. Created by Mabel’s Labels, Kids’ Safety Bracelets are durable, disposable ID bracelets for kids that can be personalized with vital information and contact information.

Mabel’s Labels co-founder Julie Cole, a mom of six, one of whom is on the autism spectrum, knows firsthand how useful every safety precaution can be. Plus 10 percent of sales is donated to Autism Speaks. $21 for 30 personalized bracelets (your peace of mind is free), mabelslabels.com

Snug Vest offers stylish pressure therapy Sometimes all a child needs is a hug, and that is especially true for children with autism. Pressure therapy is a great source of relief for many children with autism, helping them lessen anxiety when their sensory systems are overwhelmed.

With a stylish design, Snug Vest wearers don’t need to draw attention to themselves or the typical stigma that comes with traditional weighted vests. Wearers even regulate the pressure of the vest themselves to fit their needs.

Starts at $395, snug-vest-us.myshopify.com

Bouncy Bands ideal for classroom Research has proven that kids learn better when they aren’t forced to sit. Developed by an elementary school counselor, Bouncy Bands are an innovative classroom tool that aids kinesthetic learning for kids.

Bouncy Bands are heavy-duty rubber straps that attach to the legs of desks and allow kids to lightly bounce their feet and stretch their legs to release extra energy, anxiety or boredom while not disrupting the classroom. $12.95 for desks, $11.95 for chairs, bouncybands.com ChicagoParent.com |

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Get out and go There’s fun to be had throughout Chicago and the suburbs

BY DANIELLE BRAFF

T

here are so many almost-secret gems in the Chicago area that cater to special children—and most of them are free.

So make a plan now to leave your neighborhood and explore a little more this year for more family fun.

Chicago Children’s Museum

ACTIVITIES

STORYTIME Oak Park Library Sensory Storytime Who: Ages 3 and up Details: Classes are held on Tuesday afternoons, and are structured with boardmaker schedules. Children are provided with lap weights and fidget toys if requested. Children and siblings listen to picture books and sing songs.

More info: 834 Lake St., Oak Park, (708) 452-3420; oppl.org Geneva Public Library Who: Ages 3-8. A Geneva library card is required for the first week of registration, then registration opens to the general public. Registration is required.

Details: The event starts with a schedule so everyone knows what to expect. Sit discs, dim lights, fidget toys and sensory toys are provided if needed.

Kids get to do everything from making cloud dough to looking for hidden items in shredded paper and doing other sensory activities, in addition to a storytime.

More info: 127 James St., Geneva, (630) 232-0780; gpld. org

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Sensory Storytime at the Harold Washington Library Who: All ages Details: Children on the autism spectrum and those with other special needs listen to stories and play at the library during this monthly storytime.

More info: 400 S. State St., (312) 747-4200; chipublib.org

Brookfield Public Library Special Needs Playgroup Who: Ages 2-12 with a caregiver. It’s open to the public, but registration is required.

Details: Interactive games, activities and stories help children practice social and communicative skills.

More info: 3609 Grand Blvd., Brookfield, (708) 485-6917; brookfieldlibrary.info

Pump it Up Orland Park and Elmhurst Who: Ages 2-10 Details: These locations host sensory jumps once a month for children on the autism spectrum. The lights in the room can be lowered if requested, and everyone will understand if your child needs to take breaks.

More info: 1141 W. 183rd St., Orland Park, (708) 479-2220; 684 W. Lake St., Elmhurst, (630) 941-7867; pumpitupparty.com Art-Ability at Northbrook Public Library Who: All ages with a caregiver. It’s open to the public.

Details: Crafts geared for children with special needs are offered 10-11 a.m. on the second Saturday morning every-other month.

More info: 1201 Cedar Lane, Northbrook, (847) 272-6224; northbrook.info Club Wonder at the Skokie Public Library Who: Ages 3-7 Details: This monthly program for families with children with special needs is taught by local therapists. Children have enjoyed everything from art to yoga, plus music and play.

More info: 5215 Oakton St., Skokie, (847) 673-7774; skokielibrary.info

Rainbow Therapy Time at the Skokie Public Library Who: Ages 7-12 Details: This is a monthly program for older children with special needs that occurs the third Sunday of every month. The focus is on strengthening motor skills, practicing social skills and increasing language use.

Volunteers also help the children interact with dogs.

More info: 5215 Oakton St., Skokie, (847) 673-7774; skokielibrary.info Reel Movies for Real Needs at Marcus Theatre Who: Children with autism of all ages.

Details: Lights are up and the volume is down for firstrun showings once a month.

Check the website or call for times and titles.

More info: 1555 W. Lake St., Addison, (630) 932-0864; marcustheatres.com SMG Special Needs Screenings at Studio Movie Grill Who: Children with special needs and their siblings Details: Flicks are offered free (adults pay the before-noon matinee price) during special screenings just for them once a month. The lights are up and the volume is lower than normal. Children can stand, walk and dance as needed.

More Info: 301 Rice Lake Square, Wheaton, (630) 4809557; studiomoviegrill.com

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2/4/16 10:47 AM

Skokie Public Library

MUSEUMS

Chicago Children’s Museum Who: Ages 13 and under Details: On the second Saturday of the month, the museum opens an hour early for pre-registered children with disabilities for its popular Play for All event. The first 250 people will get free admission to the museum.

More info: 700 E. Grand Ave., Chicago, (312) 527-1000; chicagochildrensmuseum.org

Kohl Children’s Museum Who: Ages 8 and under Details: Six times a year, on Sunday mornings, the museum is closed to the public and opens to children with special needs.

The museum was designed to be inclusive of all children regardless of ability, so its 17 exhibits and two acres of outdoor explorations are designed for play for everyone.

More info: 2100 Patriot Blvd., Glenview, (847) 832-6600; kohl childrensmuseum.org DuPage Children’s Museum Who: Ages 2-10 Details: On the third Thursday night of the month, the museum opens for families with children with special needs.

A range of adaptive tools and equipment is available and kids can play in the sensory-based exhibits and interact with Alex, the therapy dog.

More info: 301 N. Washington St., Naperville, (630) 637-8000; dupagechildrens.org

Kohl Children’s Museum

Citizens Park in Barrington

PARKS Citizens Park in Barrington Who: All ages Details: Children with disabilities can roll up to the first universally accessible treehouse in Illinois. It’s a three-level treehouse where visitors can perch to watch a basketball game or simply sit and read a book. The 2,000-square-foot structure has more than 180 square feet of ramps, which rise around ash and oak trees to an open-air

deck, gazebo and an enclosed cabin with electricity. This took more than four months to build using 32 white oak logs.

More info: 511 Lake Zurich Road, Barrington; barrington parkdistrict.org SEBA Park in South Elgin Who: All ages Details: This new playground caters to every child and has ramps that move from play station to play station, treehouses

with slides, handicap-accessible swings plus other wheelchairaccessible play spaces.

More info: 151 Water St., South Elgin; southelgin.com Sensory Garden Playground in Wheaton Who: All ages Details: This playground is specially designed for children with sensory processing disorders and includes a fragrance garden that’s full of blossoming

plants, a sound garden with oversized instruments kids can play and the Pony Stables Playground for kids 2-5. Future phases of development will include a boulder climbing area, water play area and playground for older kids.

More info: Danada South Park, Wheaton; playforall dupage.org Danielle Braff is a Chicago freelance writer and mom of two.

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Tim and Danielle Schaeffer team up to help Nathanael thrive.

Photo by Dallas Arthur/Dallas Arthur Photography

Special challenges for dads Moms and dads often react differently with a special needs diagnosis

BY JERRY DAVICH

T

im Schaeffer chokes up recalling the sage advice he received just after finding out his son would have special needs.

Seven years ago, Schaeffer and his wife, Danielle, learned during her pregnancy that their baby would be born with hydrocephalus, more commonly described as water on the brain. The condition, caused by blockage of fluid in the brain’s ventricles, called for surgical placement of a cerebral shunt and other medical challenges for the young family.

“There was a little crying and some soulsearching,” the Naperville man says.

As with most parents of children with

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special needs, their first reaction was to surf the Internet for more information on the condition.

“We were told not to,” Schaeffer says.

“But that’s like telling a kid not to eat a cookie out of a cookie jar.”

When they did their own online research, they read story after story of kids with hydrocephalus who struggled to get through life or who didn’t make it. Still, the couple was undeterred. There was no debate or discussion about terminating Danielle’s pregnancy.

“It was not even a question,” Schaeffer says.

What was a question for the selfemployed insurance salesman from Naperville was how he, as a father, would respond to a new normalcy in his life—a son

“He told me that I was given this special child and that I was entrusted to take care of him.” with special needs. Would his son grow up to live independently? Would his son grow up to get married and have kids of his own?

Would his son grow up at all?

“I had to rethink everything and start preparing for his future,” Schaeffer says.

At three days old, baby Nathanael underwent his first surgery to place the cerebral shunt. At 18 months old, he underwent a second similar surgery. Doctor visits were as

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2/4/16 11:30 AM

commonplace as grocery store trips during that time, tallying up to more than 100 while putting more than 15,000 miles on the couple’s car in the first year alone.

“That first year was a little scary,” says Schaeffer, whose son was also diagnosed with epilepsy at 6 months old.

The first year is often the most difficult for new fathers of children with special needs. Not only do they have to deal with the physical, emotional and psychological needs of their specially challenged baby, they have to reconcile their own dreams with their new reality.

“Being responsible for caring for children with special needs is challenging and often frightening,” says Nancy Richer, outpatient case manager at La Rabida Children’s Hospital in Chicago. “When family members function in more traditional roles, it is even more so. However, most parents rise to the challenge.”

One of the most important ways to overcome many barriers is through education about a child’s special needs, Richer says.

“The mastering of new and difficult tasks can be very rewarding,” she adds.

At La Rabida, registered nurse Rosalva Torres hosts weekly classes for families who need to learn about their child’s care prior to discharge back home. During these classes,

Nathanael at birth parents may learn how to administer and change a gastrostomy tube, suction or change a tracheostomy tube, perform CPR or manage a ventilator.

“This is no small task even for those of us who attended nursing school,” she says.

Torres begins with less complex tasks and then moves parents incrementally toward more complex duties, which especially helps to empower fathers who often feel helpless at first.

Schaeffer amazed himself by watching and learning from his once-frail son, who is now almost 7. These days, Nathanael’s mental capabilities are that of a younger child, but he’s always happy, friendly with others and the brightest light in his father’s eyes.

“Socially, we believe he’s right where he should be,” Schaeffer says.

Nathanael attends first grade. He wears braces on his legs and can get around with a walker.

“He may not know if he will be sick or not sick, but he knows what bacon is, and he knows his mom and dad, and he’s starting to form sentences,” Schaeffer says proudly.

Milestones by Nathanael are not only marked, but cherished, no matter how small.

No, he can’t keep up with other kids his age, but it doesn’t affect him or get him down.

“It’s probably harder for us, as parents, than it is for him,” Schaeffer admits. “He doesn’t know and he doesn’t care.”

It’s just another lesson taught from his son, whose small steps make deep impressions on his father. Schaeffer’s wife may be more hopeful that their son will someday catch up to his same-aged peers, but Schaeffer has a more realistic attitude.

This is a common realization for many CONTINUED ON PAGE 22

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DADS

from page 21

fathers, who learn to find silver linings in any dark clouds hanging above their child.

“How many teenage kids are waiting at the door for their father with a hug and kiss?” asks Schaeffer. “Plus, I still have a dream that we can someday play golf together.”

Richer’s advice to new fathers is the same advice that fathers often want for their child, of any ability: “Take the first step,” she says.

The Schaeffers get unwavering support from their church, as well as from empathetic coworkers who also have children with special needs.

“We’ve learned to prepare for the worst and hope for the best,” Schaeffer says.

Oh, and that sage advice he received just after finding out his son would have special needs? It came from a coworker who also has a child with special needs.

“What are you doing right in life?” the coworker asked Schaeffer.

“How many teenage kids are waiting at the door for their father with a hug and kiss?”

Schaeffer didn’t understand him at first. Then he choked up when it hit him. And he still gets choked up recalling it.

“He told me that I was given this special child and that I was entrusted to take care of him,” Schaeffer says.

As with many fathers of children, their first question is, “Why? Why me? Why is this happening to me?”

Schaeffer now sees it differently.

“It’s not happening to us,” he says. “It’s happening for us.”

Jerry Davich is a Chicago area freelance writer and dad.

Photo by Dallas Arthur/Dallas Arthur Photography

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2016 Dates: June 25-August 12

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| ChicagoParent.com

2/4/16 11:29 AM

Photo by Osborn Photography

A dad’s letter to others When life is no longer typical

BY CHAD OLSON

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e weren’t prepared for Brinley. No one was. No test or ultrasound told us to worry. But immediately following her birth, the differences, the anomalies, began to add up. Extra fingers and toes were just the beginning (24 total). She was weak and had trouble breathing and was bundled off to the NICU. My exhausted wife, Tiffany, and I stared at each other, unbelieving, tears leaking out, joy chased away. For the first time, we were grappling with something we’d never faced— the concept of a child who is “not typical.”

What I wouldn’t have given for “typical” in the following weeks. A few days into Brinley’s NICU stay, a scan revealed she had a severe brain malformation. The extra fingers and toes became an afterthought.

Something purely cosmetic. The latest way

our new little girl was different, this “cauliflower” brain the doctors described, could mean what? The doctors were noncommittal and grim. What hope is there in that?

Tiffany and I were running out of threads to hang on to. The whole fabric of this child we imagined, one that fit the same pattern of our other two children, our family, was unraveling in our hands.

In those early days, it is hard to know what sort of counsel would have made our lives easier. We became NICU parents, slipping into the routine of hushed tones, heavily upholstered chairs for nursing mothers, caring but pragmatic nurses, unique-to-thehospital smells, your child among all the others struggling at the start, stumbling off the blocks. You grasp on to anything new your child is doing. Anything. A lifted hand,

We became NICU parents, slipping into the routine of hushed tones, heavily upholstered chairs for nursing mothers, caring but pragmatic nurses, unique-to-the-hospital smells, your child among all the others struggling at the start, stumbling off the blocks. You grasp on to anything new your child is doing. Anything. A lifted hand, at this point, is a leap.

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DADS

from page 23

at this point, is a leap. Keeping food down, a miracle.

1

Experts exist and you should take their advice. When your child isn’t typical, you feel like the script of your life has been shredded.

In some ways, it has. But some of the best Saturday Night Live skits are improvised, right?

The most important advice is this: accept help. You’ll be surprised how many people will start reaching out, ready to lift you and your child up. Three years later, I know how much this is true.

Family, church, work, communities, parents going through a similar experience, a kind word in the checkout line. Don’t be scared to accept the hand when it comes. Forget pride.

are improvised, right? The experts know a lot of good ways to help you improvise now that your life script has been tossed.

2

4

Search out parents like you. There are a lot of us out there—parents of “not typical” kids. You find this out quickly. It’s a lot like learning a new word—something like “vertiginous”—and seeing it pop up all over the place. The word was there all the time, but you hadn’t ever noticed it. So it goes with atypical kids and their parents. Those are some of the best helping hands to grab, because people like us are closest to understanding what you’re going through.

3

Experts exist and you should take their advice. When your child isn’t typical, you feel like the script of your life has been shredded. In some ways, it has. But some of the best Saturday Night Live skits

If you have other children, treat your new child the same as much as you can.

Brinley is exceeding everyone’s expectations at this point in her life. I think part of the reason for this is that she doesn’t escape discipline, isn’t hovered over, and does as many things on her own as possible. She gets into minor scuffles with her brother, annoys her big sister and asks (repeatedly) for what she wants until someone acknowledges her.

Like her older two siblings, she makes us laugh, makes us frustrated, makes us wonder about her future. Even if your child is your one and only—in how you treat them, how you shape them and how you love them— find ways to bring the typical into their “not typical” lives.

5

Dwell on the good. I said above that accepting help is the most important piece of advice, but that may come second to this one. Early on, I found myself fixated on what was wrong with Brinley. I spent a lot of time alone with her during her late-night feedings. She and I had long conversations that were, yes, a little onesided, but I needed them to get over feeling sorry for myself. After a few months of this, I decided I was done with regret. If I was going to cry, it was going to be tears of joy for things this little girl was going to accomplish. I’m not saying this is easy. I’m not saying this keeps me from doubting.

But by dwelling on the good, the joy that got chased away after she was born, it comes back.

There you have it. Some bits of advice from someone who has walked a similar path.

I wish you and your new child lives that are “not typical” in all the best ways.

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Delivering real progress towards hopes and dreams 2/4/16 10:49 AM

13 ways to get claims for your child’s treatment approved and paid

Y

ou’ll do anything to get your child the therapies ies and treatment they need, and you assume me everyone in involved in your child’s care is on the h same page. Then a denial arrives in the mail, leaving you frustrated, angry and facing an astronomical bill.

So we turned to a few experts with insider tips on how to help turn that “No” into “Yes”—Yoland LeLuna, client account coordinator, Sharon Kucik, family service coordinator, and Cara Long, parent liaison, at Easter Verify that the diagnosis code (this Seals DuPage & Fox Valley. will be included on the prescription Call your insurance company directly given to you by your doctor) and billand ask for details about your plan bening codes (you can usually get this from efits before starting therapy. the provider that will be rendering you the service) are valid and billable by calling your Find out if your providers are in netinsurance provider. In general, when trywork with your insurance plan using ing to get therapy services covered, you will the provider tax ID ahead of time. be more successful using a diagnosis code for an underlying medical condition versus

1 2

3

using the diagnosis of developmental delay.

Discuss this with your doctor when getting a prescription for the services you are trying to get covered.

4 5

Make sure your providers have updated insurance information as well as copies of your insurance card, front and back.

Have authorizations in place before beginning services. Get copies of the authorizations and give copies to your provider. It is best not to get just a verbal authorization.

6

If possible, schedule only a couple of sessions and allow claims to get processed before proceeding. You should CONTINUED ON PAGE 26

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2/4/16 1:44 PM

DENIED

Research Opportunity for Children Rush University Medical Center is conducting a study that examines attention skills in children with and without language-learning difficulties.

This study is being conducted by Kerry Danahy Ebert, PhD. We are looking for children who meet the following criteria: • Are 6 years through 8 years, 11 months • Have normal hearing and IQ • Do not have ADHD or autism • Have typical language skills or have language impairment (also called language disorder or language-learning disability) • Speak only English or both English and Spanish

Participation requires one to two visits, approximately 90 minutes each. Children will complete language, hearing and IQ testing, plus computer tasks that evaluate attention. There are no known risks related to participation in this study. Parents/guardians will be compensated $5 per visit and receive summaries of all test results.

Interested parents and guardians, please contact Kerry Danahy Ebert at (312) 563-6034 or kerry_ebert@rush.edu.

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from page 25

see a trend with these claims.

Remember, it takes up to 30 days for your insurance to process a single claim.

Potentially a number of services could be rendered within this 30 days, costing your family quite a bit if insurance decides not to pay these claims.

7

Open your mail/email correspondence from your insurance company as soon as possible. You will know about denials before your providers.

Call your providers to let them know about any denials and decide if you will continue services while you work to get denials overturned. Remember that if your insurance continues to deny the claims despite your appeals, you are ultimately responsible for paying these claims.

8

Call your insurance and ALWAYS document who you spoke to, the time and date and get a reference number for each call. This will help with following up.

9

If you are not getting the help you wanted on the call to your insurance company, have the call escalated to a supervisor or manager.

Remember, you are the owner of the policy; you have more pull than providers do with your

insurance. Don’t be afraid to raise your voice.

10

Consider a three-way call between you, your insurance company and a provider. This will allow everyone involved to have the same information and will eliminate the “he said, she said” dilemma.

11

Ask your primary care provider or specialist to provide a letter of medical necessity and give it to all providers. Make sure to have the letter updated annually.

12

Appeal all denials.

Each claim denial will come with the rules on appealing, so follow the appeal guidelines and remember there may be a deadline to file appeals.

S Send medical records, prescriptions and letters of medical necessity along with appeals. Keep copies ffor your records.

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If all else fails: Contact the human resources depa department that provides your insurance to see if there is someone who can help with policy issues. For instance, Illinois law mandates that autism services be covered, but this does not apply to self-funded insurance plans. Exploring other funding sources, such as foundations or buying an individual policy for just your child to cover needed services, may be another option.

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“It can feel like a triple whammy for parents.”

DR. LAWRENCE VOGEL

Shriners Hospital for Children in Chicago

The search for answers How to survive a dual diagnosis

BY JERRY DAVICH PHOTOS BY THOMAS KUBIK

H

earing the words “dual diagnosis” can be frightening for parents of a child with special needs, especially if they are already struggling to deal with an initial diagnosis.

“It was like we were reliving our life five years ago when we received my son’s prenatal diagnosis,” says Missy Gallagher, whose son, Finn, has Down syndrome.

“As a parent, you never want your child to struggle or have a hard life,” she says. “So when you hear your child has special needs and you know they have so many challenges in their future to overcome, it breaks your heart for them.”

“Plus, the thought that he now has another label that sets him apart, from not only typical kids but even his fellow peers with Down syndrome, is just not fair,” says Gallagher, who lives in Chicago.

Not only does

Finn struggle with issues related to Down syndrome, he also has obstructive sleep apnea and laryngomalacia, a congenital abnormality. So when Gallagher and her husband, Jeff, noticed a change in Finn’s behavior in early 2015, they instinctively tried to brush it off.

“We didn’t think too much of it. He was a toddler and all boy,” Gallagher says.

Finn already had difficulty communicating his wants and needs, while also recovering from major surgery for laryngomalacia. His CONTINUED ON PAGE 28 ChicagoParent.com |

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ANSWERS ™

™

in collaboration with Wood

Dale School District 7, presents:

Special thanks to our corporate sponsor:

Dr. Dana Suskind

Author of “Thirty Million Words: Building a Child’s Brain; Director, Thirty Million Words Initiative; Professor, Surgery & Pediatrics; Director, Pediatric Cochlear Implantation Program at the University of Chicago; Child’s Voice Board Member

Wednesday, April 13, 2016, 6:00 p.m.

Wood Dale Junior High School Auditorium 655 N. Wood Dale Road, Wood Dale Free and open to the public.

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Talking to your child can change their life.

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parents made minor changes to accommodate Finn’s behavior, such as taking a break from speech therapy. However, he still demonstrated a lengthy list of sensory issues, and his mother knew something more was happening.

“I knew in my gut there was more going on, but I wasn’t sure what it was or how to help him,” she admits.

Finn didn’t adapt to life’s normal transitions, he stopped sleeping through the night, and he became increasingly aggressive and destructive with his parents and therapists.

“It got to a point where I dreaded leaving the house to take him anywhere,” Gallagher recalls.

The word “autism” began seeping into the conversation, prompted by a speech therapist who also noticed Finn’s erratic behavior. An evaluation was suggested, along with inquiries regarding applied behavior analysis, or ABA. “I didn’t ever think Finn could possibly have another diagnosis,” Gallagher says flatly. “In my heart, I believe Finn is not autistic. But I also do not want to be that parent who is in denial.”

This is a common reaction for parents still reeling from a first diagnosis for their child.

The knee-jerk barrage of “crystal ball questions” to specialists is a familiar one: Are you sure? What can be done? How will this complicate our situation? Where on the autism spectrum is my child?

And should we get a third opinion for this second diagnosis?

“This process can be very difficult for parents, both emotionally and also in not knowing where to turn for help,” says Cara Long, parent liaison for Easter Seals DuPage & Fox Valley, whom Gallagher turned to first.

“I always thought that if my daughter just had Down syndrome, it would be easier,” Long says. “It was hard for me when my daughter could not be included in classes with typical children, but even harder when she was not even able to keep up with her Down syndrome peers.”

from page 27 Dr. Edith J. Chernoff, a primary care pediatrician from La Rabida Children’s Hospital in Chicago, makes it a point to develop a relationship with special needs families early on.

If a second, or third, diagnosis is needed, she wants parents to hear it from her.

“It allows them to hear it from someone they know, but also to prepare for their visit with the specialist. And to grieve before that visit, so they may be ready for a longer discussion,” says Chernoff, an assistant professor of pediatrics at the University of Chicago.

When she knows a difficult discussion is at hand, she carves out extra time during a family’s appointment. She also asks for other family members, friends and caregivers to be present.

“I sit, they sit, and I put away the computer and my notes,” she says.

Chernoff typically begins with an inclusive statement, such as “We have a problem,” letting the family know they’re not alone and she will not abandon them.

She keeps in mind that after hearing a difficult diagnosis, many families absorb very little information. Instead, they first deal with the grief and shock.

“I end the discussion by reminding them the diagnosis has not changed their child.

Instead, it has put a name to the problem,” Chernoff says.

Dr. Lawrence Vogel, a pediatrician at Shriners Hospital for Children in Chicago, says parents are far more resilient than they believe they can be. The first thing they need to understand is that they’re not alone facing these circumstances.

“I don’t see the diagnoses.

I see the child, and parents sometimes need a reminder of this,” says Vogel, director of the hospital’s spinal cord injury program.

He routinely sees the dual diagnosis of traumatic brain and spinal cord injuries, in addition to related complications or disorders.

“It can feel like a triple whammy for parents,” he says.

Dr. Sarah Bauer, a child

| ChicagoParent.com

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ration Regist pen! o pen is now n is Now o Registratio

psychiatrist at Ann & Robert H. Lurie Children’s Hospital of Chicago, says there is a growing awareness to multiple diagnoses in young children.

“And this heightened awareness is bringing heightened understanding,” she says.

Parents of dual diagnosis children often feel like they don’t fit in with other support groups, such as for only autism or Down syndrome. These parents can feel isolated while also struggling to find support resources and insurance-related provisions.

“Sadly, more parents are becoming their child’s case manager,” she says.

Chernoff agrees, noting, “Because having more than one diagnosis may make educational and medical planning more complicated, parents should keep in mind they are the best expert on their child and they should feel confident this is true.”

This is why follow-up appointments with physicians and specialists are crucial to re-address issues that may have been missed initially, the doctors insist.

“As younger kids mature, other disorders or conditions can emerge, including hearing loss and visual impairment problems,” Bauer says.

Her most probing question

to dazed or confused parents: “What are you most afraid of?”

For Gallagher, it was fear of not knowing where to turn for help.

“I felt lost, scared and discouraged,” Gallagher says.

Autism remains a possible second diagnosis for Finn, who is still being evaluated.

“This is just the beginning of our journey, and I know it’s going to take some time before we have answers,” she says. “But I’m so relieved we now have a starting point.”

Her advice to parents in similar situations is to keep in mind they’re not alone, though it often feels this way.

“Do not feel ashamed, do not feel guilty for how you feel,” she suggests. “Your feelings are normal and valid. It’s simply another bump in the road.”

Chernoff reminds parents to look through the dense forest of new challenges to see the ray of light beaming from their child.

“Parents should remember not to get lost in the diagnoses, but to appreciate their child for who they are and what their strengths are,” she says. “Love the child for being their child.”

Two Locations Two Locationsor visit keshet.org for more information.

Call 847-205-1234

847-205-1234 or keshet.org for more information.

KESHET

Keshet, a partner in serving our community, is supported by the Jewish United Fund/Jewish Federation of Metropolitan Keshet, a partner in serving our community, is supported by the Jewish United Fund/Jewish Federation of Metropolitan Chicago Chicago

Jerry Davich is a Chicago area freelance writer and dad.

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Resources Adaptive Services, Autism Spectrum Disorders . . . . . . . 30 Blind or Visually Impaired, Camps . 34 Deaf or Hearing Impaired, Down Syndrome, Epilepsy, General . . . . . . . . 37 Recreation . . . . . . 40 Support . . . . . . . . . 42

Find more information online

T

he resources you will find here are just an excerpt of the hundreds of searchable resources you will find online at ChicagoParent.com.

If you are a resource provider and your services are not listed online, e-mail Elizabeth Diffin at ediffin@ chicagoparent.com with your information or submit your information at www.chicagoparent.com/resources/ resource-submission-form.

ADAPTIVE SERVICES Extended Home Living Services 210 W. Campus Drive Suite B Arlington Heights (847) 215-9490 ehls.com

Provides stair lifts, accessible bathroom remodeling, ramps and wheelchair lifts, ceiling mounted lift systems, home elevators and general remodeling to provide accessibility. Offers free in-home consultations or visit the showroom.

Villa Park (877) 275-4907 mobilityworks.com

Provides wheelchair vans and adaptive equipment to the disabled community, including sales, mechanical service, rental vans and mobile consulting.

RampNOW 2296 Cornell Ave. Montgomery (630) 892-7267 rampnow.com

Rents, sells and installs lifts and ramps that assist individuals with mobility issues.

AUTISM SPECTRUM DISORDERS

MobilityWorks Plainfield 23855 W. Andrew Road Plainfield 5050 Dempster St. Skokie 155 E. North Ave.

Alexander Leigh Center for Autism 620 N. Illinois Route 31 Crystal Lake

(815) 477-2522 alcacenter.com

Nonprofit, full-day, year-round therapeutic day school. The school is for kids 3-18 with autism spectrum disorder, OHI, multiple disabilities, developmental delay and/or intellectual disability. Students receive 1:1 support in the areas of academics, speech, OT, music therapy, life skills, behavior and community-based instruction. Serves Cook, DuPage, Lake, Kane and McHenry counties.

Autism & Anxiety Consultants 1100 Lake St., Suite 210 B Oak Park (847) 338-2525 autismanxiety.net

Therapy for children,

adults and families with Autism Spectrum Disorder/Anxiety Disorders.

Autism Behavior & Childhood Services Chicago (773) 552-3810 abctherapyforme.com

Offers a wide range of therapies and approaches that are custom-designed for each child, using the Applied Behavioral Analysis approach in the home.

Autism Family Center 560 Green Bay Road Suite 10 Winnetka (847) 814-1096 autismfamilycenter.com

Offers a multidisciplinary approach to helping families live with autism. Services include applied behavior analysis; individual, couples and family therapy, as well as play therapy.

Autism Home Support Services 85 Revere Drive, Suite AA Northbrook (847) 564-0822 autismhomesupport.com

In-home customized ABA behavior therapy for children

with autism and other related disorders.

Autism Speaks Chicagoland Chapter 2700 S. River Road Suite 304, Des Plaines (224) 567-8573 autismspeaks.org/chicago

Nonprofit organization dedicated to awareness, funding, science, research and advocacy for autism. Also provides free services for families.

Behavioral Perspective Inc. 452 N. Eola Road, Suite A Aurora (630) 999-0401 behavioralperspective aba.com

Providing quality ABA services to maximize independence and quality of life for individuals impacted by autism.

Center for Autism & Related Disorders 212 S. Marion St., Suite 11 Oak Park (708) 358-3000 chicago.centerforautism. com

Helps each client attain maximum potential in the least restrictive environment via behaviorally-based intervention.

Charlie’s Gift Autism Center Center for Autism and Related Disorders 1048 W. Ogden Ave. Suite #200 Downers Grove (630) 810-1200 thecommunityhouse.org

Easter Seals Region Joliet

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Provides individual and group occupational, speech and mental health/behavioral therapy for children/ families through a family-centered, teambased approach. Family education/support activities and sibling activities are offered throughout the year.

After-school clubs and summer programs are offered. A family lending library is available.

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AUTISM SPECTRUM DISORDERS Chicago Autism & Behavior Specialists

therapy, educational materials and a parent support group.

901 W. Hawthorn Drive Itasca (800) 844-1232 autismbehaviorspecialists.com

Treats children with autism and related disorders. Programs are based on the principles of Applied Behavior Analysis. In addition to language and communication skills, programs encourage flexibility, problem solving, impulse control, social referencing and self-regulation. Social work, speech therapy and parent training are incorporated into treatment plans.

Chicagoland Autism Connection 1803 W. 95th St., #268 Chicago (773) 329-0375 chicagoautism.org

CAC meets on the third

Easter Seals DuPage & Fox Valley: Autism Diagnostic Clinic & Autism Services Villa Park, Naperville and Elgin (630) 620-4433 eastersealsdfvr.org

Department of Disability and Human Development programming for families Easter Seals Autism with children with autism Programs-Joliet spectrum disorders 212 Barney Drive, Joliet including pediatric physi(815) 725-2194 joliet.easterseals.com cal, occupational and Offers a wide variety of speech therapy. Plus, a

Saturday of each month September through June. At each meeting, there will be a speaker or two on a topic of interest.

medical diagnostic clinic, social skills groups, sibling recreational workshops, family special recreation nights, inclusive birth-to-4 day care, mental health

Provides a comprehensive interdisciplinary team evaluation to determine the presence of an Autism Spectrum Disorder or other developmental disability. Families leave the clinic with a diagnosis, initial treatment guidelines and resources.

Also offers a variety of services that address the specific strengths and challenges of children with autism. Services are provided individually or in a group setting.

JCYS

specialty camps Camp Red Leaf

Are you ready for CEL’s Summer Camp 2016?

Bring it on!

Summer fun awaits campers ages 13-22 with developmental disabilities!

Session I: June 13 - July 8 Session II: July 11 – August 5 Full or half-day options available Call 847.948.7001 today for details and to reserve your spot!

Save big when you sign up by April 8!

View the Camp Brochure online at www.CenterForEnrichedLiving.org/summer-camp

A safe, enriching program for individuals with special needs Summer & Travel Camps, and Weekend Respite Care for ages 9 & up with disabilities enewport@jcys.org

Camp STAR

For ADHD and related disorders A fun summer day camp experience with treatment focused on improving behavior and social skills • children entering grades 1-7 campSTAR@jcys.org

jcys.org

wbu

Serving children and families for over a century

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A special needs program that flies

W

hen the idea arose to create a circus arts program for the special needs community, Actors Gymnasium’s Executive Director Virginia Nugent saw it as the perfect opportunity to help another community “learn to fly.”

Located in Evanston at the Noyes Cultural Arts Center, the Actors Gymnasium offers two classes tailored for students with autism ages 10-14 and students with Down syndrome ages 16 years and older.

The non-competitive recreational Circus Arts, taught by certified instructors who coach according to each person’s abilities, provides instruction in a variety of circus disciplines, including aerial arts, tumbling and dance.

“After the first session, parents said they saw improvements in the self-esteem, motor skills and

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focus of their kids. Parents also noticed an increase in their kids’ willingness to try new things,” says Deanna Myers, education coordinator.

The program had 100 percent retention from the first class to the last in the first session.

Some students have even started to integrate into the typical classes as well after taking the special needs class first, Myers says.

Megan Murray Elsener

Actors Gymnasium When: Classes offered once per week: 7 8 p.m. Mondays for 10 14 year olds; 6 7 p.m. Fridays for 16 and up Where: Noyes Cultural Arts Center, 927 Noyes St., Evanston actorsgymnasium.org

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AUTISM SPECTRUM DISORDERS

Plan ahead for

This is a FREE workshop, but you must RSVP as space is limited. Please call 630-782-1766 and ask for Maria, our Special Needs Liaison.

Tourette Syndrome Camp Organization

Easter Seals Therapeutic School and Center for Autism Research 1939 W. 13th St., Suite 300 Chicago (312) 491-4110 eastersealschicago.org or eastersealsandautism.com

This campus combines educational, therapeutic research, training, school-to-work transition and adult vocational services. Interior features include special acoustic finishes, lighting fixtures and observation rooms in classrooms to help reduce distractions and promote more effective learning. Serves clients 3-22.

Have Dreams 515 Busse Highway Suite 150, Park Ridge 2020 Dempster St., Evanston (847) 685-0250 (Park Ridge) (847) 905-0702 (Evanston) havedreams.org

Offers individualized after-school programs, vocational, life skills and transition to employ-

ment programs, along with diagnostic and family support services.

Programs for children and teens include Special Olympics, Technology Club and a nationally recognized Film & Multimedia camp.

Transition to adult services include Project SEARCH Collaborates for Autism at Northwestern University and Have Dreams Academy, as well as a variety of programs that focus on developing skills for employment, internship experiences and life skills. Also provides best-practice autism training for professionals and individual and school consultative services.

Helping Hand Center 9649 W. 55th St., Countryside (708) 352-3580 hhrehab.org

Therapeutic Day School for children with autism, ages 3-21, providing

year-round best practice services. Pediatric outpatient clinic for children ages birth-21 with a wide array of disabilities and delays, providing occupational, physical, speech and language and music therapy. Also offers psychotherapy, mental health and diagnostic testing, and behavioral services.

Little City Foundation ChildBridge Services 700 N. Sacramento Blvd.

Suite 201, Chicago 1760 W. Algonquin Road Palatine (773) 265-1539 (Chicago) (847) 358-5510 (Palatine) littlecity.org/childbridge

Provides services for children 21 and under with autism and other intellectual and developmental disabilities and their families, including in-home personal and family supports, clinical and behavior intervention, 24/7 residential

ImprOV for ASD LEARN MORE @ SECONDCITY.COM OR CALL 312-664-3959

WE OFFER IMPROV CLASSES FOR TEENS & ADULTS WITH ASD.

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AUTISM SPECTRUM DISORDERS services, therapeutic art programs and special needs foster care and adoption services. The ChildBridge Center for Education provides progressive services for students with intellectual and developmental disabilities, as well as students with severe and profound needs on the autism spectrum. Also provides employment services and training, horticulture, art, recreational opportunities and residential services for young adults.

Little Friends Inc. 140 N. Wright St. Naperville (630) 355-6533 littlefriendsinc.org

Operates three schools, vocational training programs, communitybased residential services and the Little Friends Center for Autism. Little Friends serves more than 800 people each year throughout DuPage, Kane, Kendall, Will, McHenry and western Cook counties.

PACTT Learning Center 7101 N. Greenview Ave. Chicago (773) 338-9102 pactt.org

Offers educational, residential and vocational services for people with severe autism and their families. The therapeutic day school focuses on academics, independent living, communication and social interaction for students age 3-21 and includes a transition program that serves as a bridge to adult life for older teens. Also operates two group homes for children and two adult homes that focus on independent life skills and community integration.

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Resource Center for Autism and Developmental Delays Garfield Community Center 10 S. Kedzie, Room 202 Chicago (312) 746-5447 King Community Center 4314 S. Cottage Grove Room 103, Chicago (312) 747-8571 cfl.uic.edu/programs/resourcecenter-for-autism-and-developmental-delays/

Free resources, referrals and monthly training.

The Autism Society of Illinois 2200 S. Main St., Suite 203 Lombard (630) 691-1270 (888) 691-1270 autismillinois.org

Information and referral, special education advocacy, first responder training provider.

The Autism Therapy Group (224) 554-9634 theautismtherapygroup.com

ABA therapy provided in homes and pools.

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Turning Pointe Autism Foundation 1500 W. Ogden Ave. Naperville (630) 570-7948 turningpointeautismfoundation.org

Operates a therapeutic day school that supports students who require a highly organized, structured environment. Also offers recreational and residential opportunities.

BLIND OR VISUALLY IMPAIRED Hadley Institute for the Blind and Visually Impaired 700 Elm St., Winnetka (847) 446-8111 hadley.edu

The largest provider of tuition-free distance education students over age 14 who are blind or visually impaired. More than 100 courses are offered in five program areas: Family Education (for parents and grand-

parents of visually impaired children), High School, Adult Continuing Education, Professional Studies and Low Vision Focus. Materials are provided in a student’s medium of choice including large print, braille, audio and online.

and those who are sighted, the Sandy and Rick Forsythe Center for Comprehensive Vision Care, a scholarship program for post-secondary education, and a Tools for Living retail store with an extensive supply of adaptive technology.

The Chicago Lighthouse for People who are Blind or Visually Impaired

The Chicago Lighthouse Vision Rehabilitation Center (The Chicago Lighthouse North)

1850 W. Roosevelt Road Chicago (312) 666-1331 chicagolighthouse.org

222 Waukegan Road Glenview (847) 510-6200 chicagolighthouse.org

Provides education, clinical, vocational and rehabilitation services for children, youth and adults who are blind or visually impaired, including deaf-blind and multi-disabled. Offers a Birth to Three Early Intervention Program for infants and families, a blended preschool with children who are blind or visually impaired

Meets the needs of residents on the north side of Chicago as well as in the northern suburbs. It houses a Birth to Three Early Intervention Program for infants and families; a state-ofthe-art low vision care clinic offering optometry, psychological counseling and occupational therapy services; a Tools for Living retail store

offering independent living aids; and an array of enrichment programs for children and seniors.

The Illinois Association for Parents of Children with Visual Impairments P.O. Box 316634, Chicago (815) 355-2098 ipvi.org

Provides support information services to parents of visually impaired children.

CAMPS Camp Bradford Woods Indiana University’s Outdoor Center 5040 S.R. 67 North Martinsville, Ind. (765) 342-2915 bradwoods.org

Single-day and overnight programs and events for children with special needs and their families.

Camp Easter Seals Program easterseals.com

Easter Seals offers accessible camping with 140

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CAMPS camping and recreation facilities across the country. Day and residential camp sessions, as well as weekend and afterschool programs, are available.

Camp New Hope P.O. Box 764, Mattoon (217) 895-2341 cnhinc.org

Accommodates people of widely diverse developmental disabilities ages 8 and up. Wheelchairfriendly facilities include mini-golf, pontoon boat, fishing deck, on-site automatic external defibrillator, playground, sleeping cabins with air conditioning, trails, swimming pool with lift and shaded deck, respite building and the Camp New Hope train.

Camp weeks are offered

throughout June and July.

Camp Red Kite Cleveland Elementary School 3121 W. Byron St., Chicago (773) 227-0180 chicagochildrenstheatre.org/ red-kite-project/camp-red-kite

Provides a high-quality arts experience tailored specifically to the unique needs of children on the autism spectrum. Led by a team of artists, administrators and special needs teachers dedicated to creating a safe, welcoming and comfortable environment for children with autism who enjoy making art. Scholarships available.

Camp Red LeafJewish Council of Youth Services 26710 W. Nippersink Ingleside

(847) 740-5010 jcys.org

For individuals 9 and older with disabilities.

The only American Camp Association accredited camp serving both children and adults with disabilities in metropolitan Chicago, Camp Red Leaf offers safe, reliable and enriching programming for individuals with special needs through weeklong summer camps, Weekend Respite Care and 10-day Travel Camp adventures. The programs strive to increase self-esteem, promote interaction, improve social skills and encourage independence in a natural environment.

Camp Wisconsin Badger P.O. Box 723

Camp Red Kite ChicagoParent.com |

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CAMPS Platteville, Wis. (608) 988-4558 badgercamp.org

Hosts eight one-week sessions and one two-week session specially tailored to meet the needs of each camper with developmental delays. Open to 3 and up.

JCC Chicago Inclusive Camping Chicago, Northbrook, Lake Zurich and Lake Delton, Wis. (847) 763-3565 jccchicago.org

Nationally recognized for including campers with a wide range of learning, development, cognitive, social and physical disabilities. A variety of programs are offered as day camps and overnight camps for children, teens and young adults. Partners with Keshet to offer experiences alongside typically developing peers.

JCYS Camp STAR Highland Park (847) 814-7827 jcys.org/campstar

A summer treatment program for children 6-12 with Attention Deficit/Hyperactivity Disorder and related disorders. The awardwinning seven-week treatment program takes place in a full-day camp setting. Co-sponsored by Jewish Council for Youth Services and University of Illinois at Chicago.

Shady Oaks Camp for People with Disabilities 16300 S. Parker Road Homer Glen (708) 301-0816 shadyoakscamp.org

Residential summer camp for people with disabilities ages 5 and up. Also offers a twoweek day camp program

for children with disabilities ages 5-17.

Tourette Syndrome Camp Organization Chicago (773) 465-7536 tourettecamp.com

Residential camping program is designed for kids 8-16 with a primary diagnosis of Tourette Syndrome and Obsessive Compulsive Disorder and to a lesser degree ADD/ ADHD.

YMCA Camp Independence Camp Duncan 32405 N. Highway 12 Ingleside (847) 546-8086 ymcacampindependence.org

An eight-week summer camp program and four weekend retreats throughout the year, serving children and adults with spina bifida.

JCC Chicago Inclusive Camping

Our Family Programs and Pediatric Services Pediatric Therapy (Multidisciplinary) Preschool Education Summer Speech Camps Social Playgroups and Dyads Comprehensive Autism Program

NEW PRESCHOOL starting in 2016 Prepare your child for success in elementary school! Our academic program combines educational and therapeutic strategies to help children with speech, behavioral, or social challenges and supports the transition to typical ECE classroom settings.

Interactive Metronome / ADHD Therapy Behavior Management Program

Spanish Interpreters and Onsite/Website resources available

633 W Addison, Chicago 60613 | Phone: 312 458 9865 | pediatricresources.com | Fax: 773 305 8082 36

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DEAF OR HEARING IMPAIRED DEAF OR HEARING IMPAIRED AGBMS-AEHI Alexander Graham Bell Montessori School 9300 Capitol Drive Wheeling (847) 850-5490 agbms.org

Provides an oral education program for deaf and hard-of-hearing children using Cued Speech to enhance their ability to acquire age-appropriate literacy skills. Children are mainstreamed with typically developing hearing peers and receive support services from licensed teachers of the deaf and speech and language pathologists.

Center on Deafness 3444 Dundee Road Northbrook (847) 559-0110 centerondeafness.org

Serves children and adults who have hearing impairments with additional handicapping conditions such as mental illness or developmental disabilities.

CHOICES for Parents P.O. Box 806045, Chicago (312) 523-6400 (866) 733-8729 choicesforparents.org

Ups for Downs (630) 790-2474 philiprockcenter.org/projectreach

Provides technical assistance/consultation, information, training and family support to address the needs of children with deafblindness, their families and their schools.

DOWN SYNDROME

Provides parents of children with hearing loss with support, information and resources.

Down in the Southland

Illinois School for the Deaf

P.O. Box 831, Tinley Park (708) 614-6118 downinthesouthland.org

125 Webster Ave. Jacksonville (217) 479-4200 illinoisdeaf.org

Educates students who are deaf or hard of hearing.

Project ReachIllinois Deaf-Blind Services Philip Rock Center 818 DuPage Blvd.

Glen Ellyn

Devoted to fostering the development of lifelong educational, social and life skills among individuals with Down syndrome and their families in the southern suburbs. Provides educational support and programs, which will help children increase their future skills.

GiGi’s Playhouse 2350 W. Higgins Road Hoffman Estates (847) 885-7529 gigisplayhouse.org

International Down syndrome achievement centers that offer free educational and therapeutic programs and support for individuals with Down syndrome, their families and the community. Other Illinois locations include Chicago, Fox Valley, Oak Forest, McHenry, Rockford and Bradley.

National Association for Down Syndrome 1460 Renaissance Drive Suite #405, Park Ridge (630) 325-9112 nads.org

Services include information and support for families at every stage of life, leadership and self-advocacy training for young adults with Down syndrome, educa-

tion for professionals working with individuals with disabilities, and trained public speakers who present at hospitals, schools and other organizations in the community.

Ups for Downs Hartford Plaza 1070 S. Roselle Road Schaumburg (847) 895-2100 upsfordowns.org

A volunteer parent-run group for families, professionals and people with Down syndrome.

Meetings are held the third Tuesday of the month, September through May, in Elk Grove Village.

EPILEPSY Danny Did Foundation P.O. Box 46576, Chicago (800) 278-6101 dannydid.org

A non-profit foundation

created to educate other parents about epilepsy and particularly Sudden Unexpected Death in Epilepsy. The foundation’s website offers resources for parents, information on SUDEP and seizure safety, seizure monitoring devices and awareness-raising events. Funding goes toward families who cannot afford seizure devices, and research.

GENERAL Access Living 115 W. Chicago Ave. Chicago (800) 613-8549 (312) 640-2100 accessliving.org

Offers peer-oriented independent living services; public education, awareness and outreach; individualized and systemic advocacy; and enforcement of civil rights on behalf of ChicagoParent.com |

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people with disabilities.

All services are provided at no charge.

Anixter Center 2001 N. Clybourn Ave. 3rd floor, Chicago (773) 973-7900 anixter.org

Provides an array of services, including education, employment, life skills, communication, recreation, health care, counseling and support, for people with disabilities. More than 10,000 children, teens and adults are served each year at dozens of locations across greater Chicago. Advocates for the rights of people with disabilities.

Blue Cap 2155 Broadway St. Blue Island (708) 389-6578 blue-cap.org

Offers a school for children, 3-21, with intellectual and developmental

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GENERAL disabilities, including autism. On-site daycare for children of all abilities age 2-5 is available.

Center for Enriched Living 280 Saunders Road Riverwoods (847) 948-7001 centerforenrichedliving.org

Youth, teens and adults enjoy social, art and recreational programs in Riverwoods and in the community. Offers a summer camp for teens and young adults, 13-22, as well as day programs for adults ages 22 and up.

Clearbrook 1835 W. Central Road Arlington Heights (847) 870-7711 clearbrook.org

Provides opportunities through programs and services for people with autism, Down syndrome,

cerebral palsy and other developmental disabilities.

Community Support Services 9021 W. Ogden Ave. Brookfield 5416 W. 25th St., Cicero (708) 354-4547 communitysupportservices.org

Nonprofit serving suburban Cook and eastern DuPage people of all ages with intellectual/ developmental disabilities and their families.

Promotes independence and abilities to engage in community life with respite, CILA group homes and independent living arrangements, adult and parent support services, customized supported employment, transition planning and classes, cooking, art, health and wellness classes, and social

Special Recreation Associations in Illinois provide a lifetime of recreation opportunities for children and adults with disabilities.

Please visit www.specialrecreation.org or contact WDSRA at 630-681-0962 to find an agency near you.

Central Administrative Office 3135 Old Jacksonville Road Springfield (800) 322-3722 dscc.uic.edu

Provides free care coordination for families of children with special healthcare needs. The staff helps children who are residents of Illinois and have certain chronic, treatable conditions.

Special Gifts Theatre

Kishwaukee Special Recreation Association (KSRA) 815-758-6663 x122, jeggleston@dekalbparkistrict.com

South Suburban Special Recreation Association (SSSRA) 815-806-0384, www.sssra.org

Lily Cache Special Recreation Association (LCSRA) 630-739-1124, www.lilycachesra.org

South West Special Recreation Association (SWSRA) 708-389-9423, www.swsra.com

Lincolnway Special Recreation Association (LWSRA) 815-320-3500, www.lwsra.org

Southwestern Illinois Special Recreation Association (SWILSRA) 618-877-3059

Maine-Niles Association of Special Recreation (M-NASR) 847-966-5522, www.mnasr.org

Special Recreation Association of Central Lake County (SRACLC) 847-816-4866, www.sraclc.org

McDonough County Special Recreation Association (MCSRA) 309-833-4526, www.mcsra.org

Special Recreation Services of Northern Lake County (SRSNLC) Lindenhurst - 847-356-6011, www.lindenhurstparks.org Round Lake - 847-546-8558, www.rlapd.org/programs-specialrecreation.cfm Waukegan - 847-360-4760, www.waukeganparks.org Zion - 847-746-5500, www.zionparkdistrict.com

Northeast DuPage Special Recreation Association (NEDSRA) 630-620-4500, www.nedsra.org Northern Illinois Special Recreation Association (NISRA) 815-459-0737, www.nisra.org

Champaign-Urbana Special Recreation (CUSR) 217-239-1152, www.cuspecialrecreation.com

Northern Suburban Special Recreation Association (NSSRA) 847-509-9400, www.nssra.org

Chicago Park District Special Recreation Dept.

312-742-5798, special.recreation@chicagoparkdistrict.com

Northlands Association for Special Recreation (NASR) Belvidere 815-547-5711, www.belviderepark.org Freeport 815-235-6114, www.freeportparkdistrict.org Rockford 815-987-1606, www.rockfordparkdistrict.org

Fox Valley Special Recreation Association (FVSRA) 630-907-1114, www.fvsra.org Gateway Special Recreation Association (Gateway) 630-325-3857 x110, www.ray-graham.org Heart of Illinois Special Recreation Association (HISRA) 309-691-1929, www.hisra.org Illinois River Valley Special Recreation Association (IRVSRA) East Peoria – 309-699-3923, www.fondulacpark.com Pekin – 309-347-7275, www.pekinparkdistrict.org

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Division of Specialized Care for Children

Look for our ad in this magazine.

Decatur Park District Special Recreation Assn.

217-429-7750, www.decatur-parks.org

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activities. Cicero location focuses on family support services. Also owns and operates the Chicago Canine Club, offering day care, boarding, grooming, retail sales and conducting vocational training programs people with disabilities to develop skills to work in the pet care industry.

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Special Recreation of Joliet and Channahon (SRJC) 815-741-7275 x169, www.jolietpark.org/srjc-home Special Recreation Services (SRS) 708-841-1071 x233, www.specialrecservices.org Springfield Park District 217-544-1751, www.springfieldparks.org

Northwest Special Recreation Association (NWSRA) 847-392-2848, www.nwsra.org

Tri County Special Recreation Association (Tri County) 815-407-1819, www.tricountysra.org

Oak Lawn Park District/Special Recreation Cooperative 708-857-2200, www.olparks.com

Veterans Park District/Village of River Grove 708-343-5270, www.veteransparkdistrict.org

River Valley Special Recreation Association (RVSRA) 815-933-7336, www.rivervalleysra.com

Warren Special Recreation Association (WSRA) 847-244-6619, www.warrentownship.net/wsra

Special Opportunities Available in Recreation (S.O.A.R.) 309-434-2260, www.bpard.org

Western DuPage Special Recreation Association (WDSRA) 630-681-0962, www.wdsra.com

South East Association for Special Parks & Recreation (SEASPAR) 630-960-7600, www.seaspar.org

West Suburban Special Recreation Association (WSSRA) 847-455-2100, www.wssra.net

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GENERAL Care coordinators find and arrange special medical care and help parents understand and use insurance plans.

Families that meet income guidelines may also get help paying for certain medical expenses.

with developmental disabilities who reside in Southeast Cook County and Northeast Will County.

Oak Leyden Developmental Services 411 Chicago Ave., Oak Park (708) 524-1050 oak-leyden.org

Department of Disability and Human Development-UIC Family Clinics

Individual and group therapy and support services for children birth-5 with developmental delays; community dropin events for families with young children; Music Together classes; day and residential services for adults with developmental disabilities.

1640 W. Roosevelt Road Chicago (312) 413-1647 ahs.uic.edu/cl/familyclinics

Serves individuals with developmental disabilities and their families.

Services include a Hispanic Diagnostic and Family Support program, Early Intervention program and an Autism Clinic.

Pioneer Center 4100 Veterans Parkway McHenry (815) 344-1230 pioneercenter.org

Easter Seals DuPage and the Fox Valley Region 830 S. Addison Ave. Villa Park (630) 620-4433 eastersealsdfvr.org

Offers physical, occupational, speech-language, nutrition and assistive technology therapies for children of all abilities.

Also offers audiology services, community outreach programs and specialty clinics. Pediatric medical specialists partner to provide a Respiratory Clinic, Nutrition & Feeding Clinic, Positioning and Mobility Clinic, Casting Clinic, Splinting Clinic, Orthopedic Clinic, Vision Clinic and Dental Clinic.

The organization has a social worker and parent liaison available to help parents. In addition to counseling and resources, it provides support groups and sibling support groups. Other locations at 1323 Bond St., Suite 119, Naperville,

Camp Bradford Woods (630) 357-9699, and 799 S. McLean Blvd., Suite 103, Elgin, (847) 742-3264. The Lily Garden Child Care Development Center in Villa Park (eastersealslilygarden.org) is an inclusive childcare center.

Keshet: A Rainbow of Hope for Individuals with Special Needs 600 Academy Drive Northbrook (847) 205-1234 keshet.org

Provides educational, recreational and vocational programs for children and young adults with special needs (preschool through adulthood). Year-round programs allow kids to play and work alongside their typically-developing peers. They go to school, go on trips, work at

neighborhood businesses, play in a baseball league, swim, and attend summer and overnight camps. Multiple locations throughout the Chicagoland area.

Lexi Kazian Foundation-Helping From Heaven 105 Townline Road Suite 132, Vernon Hills (847) 624-5394 helpingfromheaven.org

Helps network families through fun events for the child with special needs that the whole family will enjoy. Also runs Lexi’s Closet, a place to request therapy equipment parents can’t get from their insurance company, are waiting to have delivered or are not sure might work for their child. Also accepts gently used therapy equipment.

Marklund 1S450 Wyatt Drive, Geneva (630) 593-5500 marklund.org

A nonprofit organization that makes everyday life possible for infants, children and adults with severe and profound developmental disabilities through residential and educational services. Campuses located in Bloomingdale and Geneva. Services include residential services for developmentally disabled infants, children and adults; specialized developmental training for residents as well as community clients; and also includes Marklund Day School: specialized education and life skills training for children with medical, developmental and physical disabilities, and those on the Autism Spectrum.

MidAmerica Service Dogs’ Foundation 7630 S. County Line Road Unit 3B, Burr Ridge (630) 272-8159 midamericadogsfoundation.org

Provides service dogs and companion dogs to children and adults with disabilities free of charge.

Ray Graham Association 901 Warrenville Road Suite 500, Lisle (630) 620-2222 raygraham.org

New Hope Center

An innovative, personcentered organization that supports and works with people with disabilities, their families and the community. Nearly 2,500 children and adults with developmental disabilities, including cerebral palsy and autism, receive vocational, residential, educational, respite, therapeutic and recreational services and supports at 35 locations in DuPage County.

1624 E. 154th St., Dolton (708) 841-1071 newhopecenterinc.com

Shore Community Services

Neumann Family Services 5547 N. Ravenswood Ave. Chicago (773) 769-4313 neumannfamilyservices.org

Provides education, housing, recreation, rehabilitation, training and employment opportunities to adults with disabilities and mental illness.

Community service agency that provides services to individuals ChicagoParent.com |

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Provides adult and youth behavioral health services, intellectual and developmental disability programming and homeless services through McHenry County PADS.

8350 Laramie Ave. Skokie (847) 982-2030 shoreservices.org

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GENERAL Provides programs for children and adults with intellectual and other developmental disabilities including: autism, cerebral palsy, epilepsy and many secondary mental and physical disabilities for ages birth-adult. Programs include residential, early intervention, supported living, home-based services, senior programs, vocational, in-home respite and adult day services.

Southwest Community Services 6775 Prosperi Drive Tinley Park (708) 429-1260 swcsinc.org

Hadley Institute for the Blind and Visually Impaired

Five core programs provide services to more than 450 individuals with developmental, behavioral, physical or learning disabilities

and to those with a mental illness. Day programs include vocational opportunities and training, counseling, social activities and community integration.

Physical, occupational, speech and language, and massage therapy are offered through the Southwest Therapy And Rehabilitation Services program.

St. Coletta of Illinois 18350 Crossing Drive Suite 103, Tinley Park (708) 342-5200 stcolettail.org

Provides early childhood through high school education. The school serves about 80 students who are developmentally disabled or have autism.

The Vocational Training Center in Tinley Park provides opportunities for 250 individuals with spe-

cial needs. The residential program is designed to provide quality housing for special needs individuals. The program consists of 30 groups homes within 15 southwest suburban communities of Chicago.

Suburban Access Inc. 900 Maple Ave., 3rd Floor Homewood (708) 799-9190 suburban-access.org

Nonprofit agency handles case management and service coordination to individuals with developmental disabilities in 18 townships of south and west suburban Cook County.

Trinity Services Inc. 301 Veterans Parkway New Lenox (815) 485-6197 trinity-services.org

Serves 3,500 children and adults who have developmental dis-

abilities or mental illness needs. Provides a wide range of programs including residential options, Trinity School for K-12, adult learning programs, employment services, a therapeutic horseback-riding program, crisis prevention and intervention services.

V.I.P Service Dog Foundation P.O. Box 851, Oswego (866) 439-3362 vipservicedogfoundation.com

Trains service and companion dogs for the disabled.

RECREATION 1st Position Dance and Movement Held at Dance Center Evanston 1934 Dempster St. Evanston (847) 563-8719 1stposition.us

At Southwest Dental

we take special care of

special needs.

Exceptional care and patient comfort go hand in hand at Southwest Dental Group. This gives special needs children and adults an experience they can feel good about - with the option of IV sedation for situational anxiety.

We believe there’s no need too special.

(708) 403-3355 16600 South 107th Court Orland Park, IL

Dr. Tentler holds diplomate status in the American Society of Dentist Anesthesiologists.

Dr. Robert L. Tentler and Associates, General Dentistry

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Dr. Bob Tentler

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RECREATION Designed to encourage movement and improve posture and selective motor control, this dance program for kids also promotes socialization and artistic expression.

Classes include facilitators for each student and live piano music.

Chicago Children’s Museum Navy Pier, 700 E. Grand Ave. Chicago (312) 527-1000 chicagochildrensmuseum.org

On the second Saturday of every month, the museum hosts its Play For All program, which provides families of children with special needs a chance to visit the museum early and play in a quiet, more manageable setting.

Opens at 9 a.m. for the pre-registered guests and offers a quiet room with special lighting. Museum opens to the public at 10 a.m. Registration is required. The first 250 to register (limit six per family) receive free admission.

Funtastic Therapies Multiple locations (224) 554-9634 funtasticgymnastic.com

Offers occupational and speech therapy in swimming pool facilities.

Haley’s Playground 2230 Cornell Ave. Montgomery (630) 777-5045 haleysplayground.com

Provides a safe, healthy, sensory motor environment for individuals with physical, cognitive and social disabilities. The goal is to educate children how to play together in everyday situations.

Available for ages 2-30, mentored by their peers of typical development.

Offers Thursday Teen Night, Saturday Morning Classes and Sunday Open Gym.

Marklund

KEEN: Kids Enjoy Exercise Now University of Illinois at Chicago Sport and Fitness Center 828 S. Wolcott Ave. Chicago (312) 876-2536 keenchicago.org

Nonprofit, volunteerled organization that provides free one-to-one recreational opportunities for people ages 5-21 with developmental and physical disabilities.

KEEN pairs a trained volunteer “coach” with a young athlete in sports and swim program.

Multiple locations available.

Right Fit Sport Fitness Wellness 7101 S. Adams St., Unit 7 Willowbrook 1045 S. LaGrange Road LaGrange (630) 850-4050 right-fit.com

Right Fit’s Raise the Bar fitness programs and camps are offered year round for youth

and adults with autism spectrum disorders and those who are physically and mentally challenged.

Right Fit is a partner with PAK (ProActive Kids), training youths who struggle with obesity and providing support to the families.

School of Performing Arts Spectrum Program 200 E. 5th Ave., Suite 132 Naperville (630) 717-6622 schoolofperformingarts.com

Workshops in music, theater, dance, and visual arts are geared toward children with special needs. Also offers summer camps for children with special needs.

Second City Improv for ASD 1608 N. Wells St., Chicago secondcity.com/training/ chicago

Offers both teens and adults with Autism Spectrum Disorders a

unique mentoring and development experience that includes improv games and exercises to help with the exploration of relationships and social cues.

Sky High Sports 2244 Corporate Lane Naperville 6424 Howard St., Niles (630) 717-5867 (Naperville) (847) 801-5867 (Niles) Nil.JumpSkyHigh.com Nap.JumpSkyHigh.com

Once a month, they turn off the music and dial down the distractions for special jumpers to visit this trampoline center.

One court remains especially quiet for kids with sensory disorders who need an extra peaceful environment. Children with physical disabilities can also join the fun.

Jumps are held from 3-6 p.m. the first Tuesday of each month. Cost is $5 for three hours for the special jumper with a parent or therapist

$5. Siblings, friends and others who jump are also $5.

Special Olympics Illinois Young Athletes Program

Special Gifts Theatre

(630) 942-5610 or (309) 888-2551 soill.org/young-athletes

P.O. Box 2231 Northbrook (847) 564-7704 specialgiftstheatre.org

An educational and therapy-based drama program that uses the stage as a platform to develop social skills.

Multiple locations and programs are available year round for kids and adults.

Special Olympics Illinois Northern office 500 Waters Edge, Suite 100 Lombard (630) 942-5610 soill.org

Provides sports training and competition for children (8 and older) and adults with intellectual disabilities.

Check website for competition schedule and locations.

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A gross motor training program for children 2-7 with and without intellectual disabilities.

Special Recreation Associations in Illinois specialrecreation.org

Special Recreation Associations provide community-based special recreation services to children and adults with disabilities.

These agencies are members of the Illinois Therapeutic Recreation Section of the Illinois Park and Recreation Association.

Therapy Yoga Gymnastics Rocks Chicago, Libertyville, Niles and Northbrook (773) 991-7316 therapygymnastics.com

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SUPPORT Family Support Network of Illinois

Provides pediatric occupational and physical therapy in gymnastic and yoga centers. Certified therapists create fun individualized sessions that use gymnastics equipment and yoga activities to improve physical, social, cognitive and life skills.

651 E. 159th Place South Holland (708) 331-7370 familysupportnetwork.org

Works to unify individuals with disabilities and their families to advocate for funding, services and community resources.

SUPPORT

Illinois Parents of Adults with Developmental Disabilities (IPADD) Unite

Celebrate Differences 5375 Route 34, Suite 4 Oswego (630) 885-3006 celebratedifferences.org

An all-inclusive community resource center, welcoming all children and their families regardless of age or disability. Offers monthly workshops, sibling workshops, a resource library, a summer and holiday party, a Next Chapter book club, play groups and more. Connects families through outreach

3104 Treesdale Court Naperville (630) 922-3232 groups.yahoo.com/neo/ groups/IPADDUnite

PACTT Learning Center projects, social activities and social networking.

Center for Independent Futures

disabilities and their families access the skills and opportunities to realize full lives.

1015 Davis St., Evanston (847) 328-2044 independentfutures.com

Family Resource Center on Disabilities

Helps individuals with

11 E. Adams St., Suite 1002

$1. 75

is Win th house M Drea

ago n ChiC Millio Million in C A SH s OR Choo

e $1.5

Chicago (312) 939-3513 (312) 939-3519 TTD frcd.org

Provides information and support for families, free seminars, Youth Advocacy Project and Parent-ToParent Training Project.

Offers free online support and resources specific to Illinois on topics including: transition, employment, self-employment or supported employment, volunteerism, day programming, funding,

legislative advocacy, housing, social security, Medicaid and Medicare and transportation.

National Lekotek Center 2001 N. Clybourn Ave. Suite 100, Chicago (773) 528-5766 lekotek.org or ableplay.org

Offers therapeutic playbased sessions and play groups for children with disabilities (birth-8 years) and their families. These play sessions are structured to help children with special needs learn, develop and thrive in a world that presents them with many unique and complex challenges. Toys and play are used to help the children relate to the world around them. Member families can borrow 5+ toys per month from the toy lending library. Services are

1 in 50 ODDS OF WINNING

Benefitting

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SUPPORT provided in English and Spanish.

The volunteer board of directors, advisors and helping hands connect neighborhood resources and information on apraxia and associated disorders with the individuals, families, therapists, educators and other professionals who need them. The Apraxia Connection serves Chicago-area communities and the Midwest.

Protected Tomorrows Charities 103 Schelter Road Lincolnshire (847) 522-8080 protectedtomorrows charities.org

Not-for-profit dedicated to helping families with special needs optimize the lifelong care of their loved ones. The mission is to provide resources, research and education for families of individuals with disabilities and the elderly.

South Chicago Parents & Friends 10241 S. Commercial Ave. Chicago (773) 734-2222 scpf-inc.org

Supports people of South Deering, South Chicago, South Shore, Pullman and Roseland communities with developmental

Tic Together Community Group River Heights Business Center 5375 Highway 34, Suite 4 Oswego

Special Olympics Illinois disabilities, enabling them to become productive members of society by allowing them to learn, work, play and live like others.

Special Parents for Special Kids Joliet

specialparentsforspecialkids.com

A parent-led group open to all parents, regardless of their child’s diagnosis.

Monthly meetings with guest speakers are offered to share experiences and support. Childcare provided on-site.

Supporting Illinois Brothers and Sisters 3800 N. Lake Shore Drive, #3E Chicago (708) 989-3619 sibsnetwork.org

Nonprofit organization providing support to siblings of people with disabilities in Illinois by

connecting them with information, networking opportunities and resources to enhance quality of life for the entire family.

Support group for people whose lives have been touched by Tourette Syndrome. Meets the third Wednesday of every month and is open to all ages. For information, email tic2gether@gmail. com.

The Apraxia Connection theapraxiaconnection.org

IK Gymnastics Chicago 2500C West Bradley Place Niles Gymnastics Academy at 7779 North Caldwell Ave. Libertyville Gymnastics Academy Northbrook Gymnastics Training Center

www.therapygymnastics.com

A differential experience that’s out of the clinic and into the gym

Therapy OT/PT/Speech

Dynamic therapy that unleashes children’s potential while improving strength, coordination, fine and gross motor skills, social skills and confidence.

Yoga

Yoga develops sensory regulation, focus and self-control.

Children gain mind and body balance.

Gymnastics

Children have exceptional sensory and motor experiences using gymnastics equipment. Therapy in a gym is unique!

Rocks

Therapy Yoga Gymnastics Rocks is an overall terrific experience. Children have fun while making remarkable progress!

People are saying...

“TYGR is the highlight of my child’s week”

Contact to schedule a session

“What an amazing idea for therapy!”

info@therapygymnastics.com (773) 991-7316

“My children have so much fun in the gym!”

BCBS Provider Will bill insurance

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Specıal Parent CHICAGO

SERVICE DIRECTORY

THANKS TO OUR SPONSORS Looking for the right therapist for your child?

Elmhurst Learning and Success Academy (ELSA) Chicago area ABA Evaluation and Treatment for children with Autism Spectrum Disorders

See our ad on the Inside Front Cover

See our ad on page 7

SIBLING SUPPORT

SIBSENSATIONS PROGRAM FOR SIBS OF KIDS WITH SPECIAL NEEDS

SIBSENSATIONS gives siblings (ages 8-13) of children with special needs a chance to meet peers in a fun, friendly setting where they can share common joys and concerns. Through games, activities and discussions, they will form friendships, learn about disabilities and discover how to handle tough situations they all face.

When:

$10.00 per session, registration is required.

Where:

acktman Children’s Pavilion Y 1675 Dempster-Park Ridge, IL

Contact:

Kathryn Smart MS RN, 847-723-9484 Kathryn.smart@advocatehealth.com

PEDIATRIC THERAPY

Integrated Pediatric nterventions Interventions In our clinic and your home, our exceptional pediatric therapists use cutting-edge treatments, family-based play and therapeutic peer play groups to grow your child’s independence.

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At Southwest Dental we take special care of

special needs.

Exceptional care and patient comfort go hand in hand at Southwest Dental Group. This gives special needs children and adults an experience they can feel good about - with the option of IV sedation for situational anxiety.

We believe there’s no need too special.

(708) 403-3355

16600 South 107th Court, Orland Park, IL

Locations in Northbrook & Chicago

Call 847.412.4379

A partner with the Jewish United Fund in serving our community. 1.2016

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PEDIATRIC DENTISTRY

Saturdays: 9:00 a.m. – 11:30 a.m.

Monthly meetings, please call for upcoming dates

Cost:

44

847.676.5398

for a free consultation

Dr. Tentler holds diplomate status in the American Society of Dentist Anesthesiologists.

Dr. Robert L. Tentler and Associates, General Dentistry

See our ad on page 5

Look for the Summer issue of Chicago Special Parent in July!

Specıal Parent ChiCago

SUMMER 2015

An empowerment guide from

Respite at risk: What’s at stake

10

tips for birthday party success

+

Tame tantrums today

Moms on a mission All hands on deck for kids LOCAL RESOURCES YOU NEED

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CHICAGO Spec覺al Parent Advertiser Index Ad Name .....................................Page Number(s)

Elmhurst College ...............................................................7

Advocate Lutheran General .....................................12, 44

Extended Home Living Services ....................................22

Autism Home Support ...................................................24

Generation Law ...............................................................33

Ben Neiburger, Generation Law ....................................45

Hope Institute .................................................................42

Camp Lee Mar..................................................................22

Jewish Child & Family Services................................16, 44

Sensory Kids/belly......................................................... 48

Center for Enriched Living, The ..................................... 31

Jewish Council For Youth Services ................................ 31

Shriner's Hospital..............................................................5

A Childs Voice School......................................................28 Clancy & Associates .........................................................11 Cove School, The ...............................................................8 DuPage Children's Museum ...........................................35 Easter Seals DuPage & Fox Valley .................................10 Easter Seals Metro Chicago ............................................29 EB Peds ............................................................................36

Karate Can-Do! Foundation ........................................... 21 Keshet ..............................................................................29 LaRabida ..........................................................................32

Rush University ...............................................................26 SEASPAR........................................................................... 21 Second City, The ..............................................................33

Smart Love Preschool ..................................................... 15 SociAbility........................................................................47

Learning Disability of Illinois ......................................... 16

Southwest Dental ....................................................40, 44

Northwest Special Recreation Association ................... 12

SRANI ...........................................................................2, 38

Northwestern University - early intervention .............35 Path to Academics, Community and Employment (P.A.C.E) program at National Louis University ........28

Steinberg Behavior ...........................................................3 Therapy Gymnastics .......................................................43

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INSPIRATIONS

Part of that world

BY ELIZABETH DIFFIN

G

rowing up, Nicole Minassian wanted to be normal. But one thing always stood in the way of others realizing just what she has to offer: her motorized scooter.

Nicole, 20, has a rare neurological disorder called hypomyelination. She lacks myelin—the layer that surrounds nerves and helps conduct signals in the body—which causes her to have trouble with things like coordination, balance, sensation and fine motor skills. It also means that while she can still walk, she usually uses a scooter, which often leads others to assume that she can’t communicate.

But last spring, Nicole had an opportunity to speak for herself, and it was in an environment she didn’t expect. On a whim, the girl with a selfdescribed “princess-y personality” competed in—and won— the title of Miss Amazing.

Miss Amazing’s mission is to provide opportunities for girls and women with disabilities to build confidence and self-esteem in a supportive environment. Participants in six age groups “compete” in the areas of Introduction, Evening Wear, Talent and Interview. In laymen’s terms, it’s a pageant. But Nicole, who was crowned National Miss Amazing Queen after winning the Illinois title, says it’s much deeper than that word implies.

“It’s not like a normal pageant,” Nicole says. “The whole point … is to show your confidence with yourself instead of actually looking at how you look or what you’re wearing.”

For her talent, Nicole gave a speech on a topic near and dear to her heart: disability acceptance. But rather than droning on about the importance of including the special needs community in “normal” life, she added an unusual twist. Dressed in a mismatched, Ariel-themed outfit that included fork earrings, she interpreted the song “Part of Your World” from The Little Mermaid to include people with disabilities.

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“Every disabled person has a purpose and the potential to make genuine, equally valuable contributions to society,” she said, to cheers from the audience. The speech concluded with the lyrics, “Bright young women, sick of swimming, ready to stand.”

Afterward, she was surrounded by people who told her the speech touched them so much, it made them cry.

“It was an unbelievably moving experience,” says her mom, Sharon.

Sharon says her daughter had a positive impact on some of the younger girls and mothers they met at Miss Amazing.

And she says that having so many different disabilities represented in one place served as a reminder that all special needs are challenging and that comparing those challenges is counterproductive.

“As parents, we were almost more accepting of our issue based on seeing other people’s,” she says. “It reminds

you what you really need to look at.”

While Nicole is probably done competing in pageants—most pageants for those with disabilities tend to be too specific to include her diagnosis—she is planning to attend Illinois Miss Amazing and National Miss Amazing (which is in Chicago in late June), wearing her crown and sparkly sash. And she’ll continue to think about ways she can use her “normal” self to change the world, just like Miss Amazing taught her.

“I saw I could be something bigger,” she says. “You don’t have to be some big celebrity.”

Sharon agrees that, no matter what path her daughter chooses, Nicole has great potential.

“I think it may have sparked a little advocacy in her for the disabled community,” her mom says. “She’s showing her colors more. … And I think the disabled community needs someone like her.”

u Nicole Minassian, 20 u Hometown: Naperville u Family: Parents Chris and Sharon; brother Hunter, 16 u For more information on Miss Amazing, visit missamazingpageant.com

In her words

u “It bothers me when people think I’m inspira tional for accomplishing normal things. … It’s weird when people say you’re inspirational for having a life.” u “We, historically, have been thrown into institutions and com pletely segregated. Now, even though things like that aren’t acceptable anymore, people don’t necessarily fully accept us as normal people.”

| ChicagoParent.com

2/4/16 10:55 AM

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