Chicago Special Parent Summer 2014

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www.specialrecreation.org

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.

Special Recreation - your child will explore whole new worlds! The Special Recreation Network of Illinois (SRANI) provides information on the 33 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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We believe that every child has something to say. It is BY YOUR SIDE’S goal to help your child connect and engage with their family and community so that they are heard and understood.

Contact BY YOUR SIDE to schedule a FREE programming evaluation for your child. BURR RIDGE (630) 590-5571 ADDRESS 16W361 S Frontage Rd Suite 131 Burr Ridge IL, 60527

SCHAUMBURG (847) 496-5513 ADDRESS 1920 Thoreau Drive Suite 180 Schaumburg IL, 60173

THERAPIES WE PROVIDE: ABA (Applied Behavioral Analysis) Speech-Language Therapy Augmentative and Alternative Communication (ACC) Feeding Therapy Occupational Therapy Cognitive Therapy Social Groups

In addition to the therapy we provide at our center locations, we also provide IN-HOME therapy and contract our services to schools. ChicagoParent.com |

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Inside

IN OUR SHOES 7 7 One mom is taking nothing for granted 8 American gladiator

Perspective, sanity and gratitude prove to be best weapons

FEATURES 17

Cohen’s journey Chicago family is determined to spread the word about 22q11.2 deletion syndrome

21

One size doesn’t fit all How to make therapy work for your family

25

Got five minutes? A primer on being a parent to a child with special needs

30

A+ school days

10 ways to help your child make a positive start to the new school year

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Technology changing lives

Advances are creating new ways for communication and learning

ON THE COVER Cover kid: Vashon Jaden Morgan, 4, of Chicago. Photographer: Liz DeCarlo Design: Claire Innes

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Plus Day of Play ■ Sweet dreams makeover ■ News you can use ■

RESOURCES

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Hundreds of resources for you ■ Second City opens doors to those on the spectrum ■ School puts students on level playing field ■

INSPIRATIONS 48 Miles Evans has the world in focus

Vashon’s favorite things Favorite books and movies: Curious George and The Berenstain Bears Favorite food: Spaghetti Favorite saying: Since Vashon loves being outside or on the go, he is always saying “let’s go bye-bye.”

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Pauly’s Pals for Rowers on the Autism Spectrum ✶ or Auditory Processing Issues

Pauly’s Pals pairs individuals with auditory processing challenges and autism with peer supportive rowers. Named in honor of Pauly Montgomery who taught all of us at Chicago Rowing Foundation the pure enthusiasm and joy associated with learning a new skill. • 6-week sessions • Indoor Rowing Tanks • Easter Seals trained volunteers Participants increase social interaction and build communication skills, while learning how to row and staying healthy. Our affordable program is $90 for six sessions! “Exercise is the gateway to build fitness, self-esteem and relationships. Pauly’s Pals is an incredible program that encourages peer buddies and engages families to help the children and adults achieve success.” - David S. Geslak, Founder of Exercise Connection & Author of The Autism Fitness Handbook

For more information about this 6-week program or to donate to Pauly’s Pals, go to rowchicago.com/adaptiverowing or contact Betsy Trevarthen at btrevarthen@rowchicago.com 312.636.1239 • WMS Boathouse • 3400 N. Rockwell, Chicago

Transportation Resources: PurplePlane ChicagoParent.com |

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FROM THE EDITORS

You don’t have to do it alone If you take nothing away from this issue of Chicago Special Parent, take this advice from a mom who has been there: Find someone who is ahead of you on this journey. It can be easier to follow in their footsteps than to always have to create TAMARA L. your own path. O’SHAUGHNESSY The mom, Chicago Editor Special Parent Advisory Board Member Cara Long, not only has walked in your shoes with her daughter, Maggie, who has Down syndrome and other medical complications, but she also believes it is her mission to help families just like yours. While sitting at a small table in Panera a few months ago talking about Special Parent, Long bubbled over with thoughts on what she thinks parents with children with special needs need to know. We both responded: You need to write these down. Long paused.

Good idea, she said. The result is an article that allowed her to share just the tip of the iceberg of the knowledge and lessons learned over her years as a registered nurse, mom and parent liaison (see page 25). We know that LIZ DECARLO adding special needs Editor can be challenging for a family. Many people tell us they feel more isolated than embraced, overwhelmed with the choices and decisions that must be made every day as they do the absolute very best in raising their child. We hope Long’s article, as well as all of the other articles and resources in this issue, make your life just a little bit easier— even if it’s only to confirm that you are not on this journey alone. We are with you.

You spoke, we listened In 2008, we created Chicago Special Parent with this goal in mind: To bring children with special needs and families together and to put the best resources in parents’ hands. The response has been overwhelming and heartwarm ing. But the most common com ment we hear is that you want and need more. We have taken those comments very seriously. Starting in July, we will unveil a new monthly newslet ter devoted to special needs, high lighting events, resources and tips. We welcome your suggestions on what you think families want to read. Sign up for the special needs news

letter at ChicagoParent.com.

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 social-emotional problems.

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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.

ELLEN METRICK is a consultant, researcher and evaluator for toy retailers and manufacturers regarding toy design and the impact of play on childhood development. She is director of Industry Relations & Partnerships at the National Lekotek Center, which focuses on accessible play for all.

LARRY REINER, Ed.D. CPRP, with a doctoral degree in counseling, adult and higher education, 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.

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STAFF EDITORS Liz DeCarlo, Tamara L. O’Shaughnessy ASSOCIATE EDITOR Elizabeth Diffin ART DIRECTOR Claire Innes EDITORIAL DESIGNERS Jaquinete Baldwin, Sky Hatter DIGITAL EDITOR Graham Johnston DIGITAL CONTENT MANAGER Jackie McGoey CONTRIBUTING WRITERS Cara Long, Kristy MacKaben, Gillian Marchenko, Ellen Metrick INTERN Kristina Lazzara DISPLAY AD SALES Walter Burden, Dawn Engelhardt, Lourdes Nicholls, Karen Skinner, Adrienne Smith CLASSIFIED AD SALES Walter Burden ADMINSTRATIVE ASSISTANT Jessica Doerr AD PRODUCTION MANAGER Philip Soell AD DESIGN MANAGER Andrew Mead AD DESIGN Maggie Acker, Debbie Becker CIRCULATION MANAGER Kathy Hansen DISTRIBUTION COORDINATOR Alan Majeski

Learning for a lifetime

ELMHURST LEARNING AND SUCCESS ACADEMY (ELSA)

CREDIT MANAGER Debbie Zari COLLECTIONS Charlie Kelly ______ PUBLISHER Dan Haley VP/OPERATIONS DIRECTOR Andrew Johnston COMPTROLLER Ed Panschar

CONTACT PHONE (708) 386-5555 FAX (708) 524-0447

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—in semesters that follow the academic calendar of Elmhurst College. Students in this four-year program, who are between the ages of 18 and 28, 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.

EDITORIAL chiparent@chicagoparent.com DISPLAY ADS advertising@chicagoparent.com CLASSIFIED ADS classified@chicagoparent.com CIRCULATION circulation@wjinc.com WEB SITE ChicagoParent.com Our offices are at 141 S. Oak Park Ave.,

Request Information Elmhurst Learning and Success Academy Elmhurst College 190 Prospect Avenue Elmhurst, IL 60126

Visit: www.elmhurst.edu/elsa Call: (630) 617-3752 Email: elsa@elmhurst.edu

Follow us on facebook.com/SPSelmhurst

Oak Park, Illinois 60302. Office hours for all departments are 9 a.m. to 5 p.m. © 2014 Wednesday Journal, Inc. All rights reserved.

Meeting you where you are. Taking you where you want to go.

ChicagoParent.com |

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In Our Shoes

MY LIFE

Taking nothing for granted

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icole Knepper, the fun-loving mom behind the national bestseller, Moms Who Drink and Swear, and the hugely popular blog from which it grew, knows life could have taken a much different turn. As a “poster child” for ADHD, diagnosed in first grade in 1976 when the stigma was huge, she says she was glad to have parents who got her involved in activities and supported her even when they had no support themselves. “I’m very, very lucky and I know that. I take nothing for granted,” she says. “... I’m a success story in a sense that it didn’t take me down completely.” But that doesn’t mean she didn’t rail against the unfairness of it all. “Why couldn’t I do this, why couldn’t I stay in my seat, why couldn’t I stop talking? It’s very bad for your selfesteem to continue to fail.” But with the proper medication, therapy and organizational tips and a stick-to-it attitude, she ultimately achieved two master’s degrees, held good jobs and became a mom of two great kids. Both kids have ADHD. Knowledge and early action, she says, saved her son a lot of the heartache she endured as a child. Her daughter has additional special needs and many special qualities. “We’re so lucky now. We live in a day and age when we have so much more knowledge. That knowledge is power,” Knepper says. When she started a Facebook group as a stay-at-home mom and eventually the blog, “it just came

from what was inside of me, which was just this urge and this need to reach out and to be connected, to be honest and empower people to say ‘hey, this is hard for everybody,’” she says. “To say, ‘Find your people, find your tribe and make sure you have this supportive community. You are going to need it.’” She calls her efforts a “quest to normalize the abnormal.” She wants moms to know there’s no shame in falling on the edge of the curve. Her focus today is on a new book

to help families touched by mental illness, being written under the working title, Suck it, Stigma. “My absolute goal in life is to help families be the best they can be, to be well, to normalize whatever else they are going through,” Knepper says. And while she does that, she says she’s OK with her family being a poster family for the functional dysfunctional because they are making it work for the long run. “We’re fighting for our family all of the time.”

In mom’s words Your best survival strategy as a mom: Boundaries and balance. It’s what works for your family. Once you set the boundaries, though, you need to be firm with them. If you could change one thing about being a parent with a child with special needs: I wouldn’t change a thing! I truly believe

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that everything in my life is an opportunity. I say this so often, but it’s true—having kids with some extra needs keeps me from catching the disease of self. The me time is limited, so I always make it count. The piece of advice that helped you early on: Ride the wave. Just

relax and ride the wave. Cheesy metaphor, but quite perfect. Yes, the wave is powerful, but I can adjust my strength and energy to “ride it” and not just survive it, but also thrive. What has been your happiest moment: When I see my family own each other. When we are

together and just melt into whatever we are doing and they are every bit of themselves, I love watching it happen. I don’t think they know that I often stop and capture the weird, random moments when we aren’t doing anything special, but still, it takes my breath away just to know that they are breathing.

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MY LIFE

Yoga American Gladiator for

Perspective, sanity and gratitude prove to be mom’s best weapons

Special parentS

BY REBECCA HILL

and caregivers

a unique approach to ◆ stress management ◆ body awareness ◆ relaxation taught by a veteran yoga teacher and parent of a special needs child To bring Yoga for Special Parents to your community, parent support group, or local yoga studio, contact Maria Rosner, cyt /YOGAforSpecialParents 269.465.6711 yogamaria@comcast.net 8

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here is no lounging around in pajamas. I have to get up, get the coffee going, and jump in and start calling doctors and therapists, fill out paperwork and write a social story and make sure we have enough medicine to make it over the holiday weekend. Silly me, I was thinking we could go to the park or something. This is not how I pictured motherhood. The whole supermom thing gets old sometimes. I get tired, so tired, of being resourceful and networking and planning, planning, planning so we could get through the day with a minimum of meltdowns and trips to the ER. The thing that wears me out the most, though, is the neverending fight against self-pity. It is my nemesis, my worst enemy, and it chases me, hounds me, sneaks up beside me and taps me on the shoulder. It is a snake in my sleeping bag, a tiger in the trees, a hungry lion looking to devour me. A pushy salesman trying to get a foot in the door. I must not hesitate. I have to slam the door without a second thought. Must. Not. Engage. The trouble is, no one around me is much help. Most of my friends aren’t comfortable telling me to snap out of it. Who is going to tell someone with a critically ill child with autism and two sons with a bleeding disorder to “buck up”? So I have to be my own security guard, or in about 20 minutes I turn into a combination of Veruca Salt and the Creature From the Black Lagoon. I used to force myself to read articles about Africa, Haiti, Iraq. I would read stories on the bleeding disorders websites about kids who would love to have the freedom and ease of

I focus on the good. My son’s beautiful blue eyes, a family moment of hilarity when Dad’s pop explodes, our ability to not sweat the small stuff, because we have so much big stuff. movement that mine do. I am very aware that most of the world does not have the access to medicine and therapies that we are blessed with. I remind myself that it is a uniquely American perspective to feel I have a right to healthy kids, a vacation and a car that never breaks down. But then my neighbors take off on a spontaneous weekend trip to the water park and poof! I am starting to turn all slimy and whiny and resentful again. So I focus on the good. My son’s beautiful blue eyes, a family moment of hilarity when Dad’s pop explodes, our ability to not sweat the small stuff,

because we have so much big stuff. Faithful and loving friends, and above all the knowledge that my sons are acutely aware of how desperately we love them. Perspective, sanity, and yes, gratitude. The best weapons a girl could have. So maybe I can relax, just a little. Have some coffee, and ignore the doorbell no matter how many times that pushy salesman rings. Go away, sir. We are just not buying today. Rebecca Hill is a Chicago mom of three boys with special needs and the author of two blogs about parenting children with special needs.

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Learning Disabilities Association of Illinois

Has your child been diagnosed or do you suspect that your child has a learning disability? For information contact:

LDA of Illinois 10101 S. Roberts Road, Suite 205 Palos Hills, IL 60465 phone: (708) 430-7532 e-mail: ldaofil@ameritech.net www.ldail.com

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Illinois’ Largest NMEDA QAP Dealer MobilityWorks features a wide selection of new and used wheelchair accessible vehicles, scooter lifts, rental vans and driving aids. Meet with one of our friendly Certified Mobility Consultants at one of our 3 Chicagoland showrooms to help you with selecting the right van or equipment for your needs.

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Plainfield 23855 W. Andrew Rd. Plainfield IL 60585

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Join us for our 4th Annual MobilityExpo and Conference October 24th 2014. Call (877)557-9470 to reserve your tickets!

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DAY OF PLAY

Undercover fun that fuels literacy BY ELLEN METRICK

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ne of the first things that comes to kids’ minds at the onset of summer is “close the books, school’s out!” In order to keep literacy a priority when kids want nothing to do with reading, be a little stealthy and sneak in some letter love with these games and activities. Just like hiding vegetables in brownies and smoothies, kids won’t even realize they are reading as they enjoy this simple day of play.

Legible edibles

Use letter cookie cutters to make impressions in bread before toasting. Those letters provide the perfect canal for squeezing honey (also good for working on muscle strength and gross motor skills). If pancakes are what you please, squeeze the mix out of a bottle to create legible edibles. Make a word for the day and then incorporate that word throughout your day.

ABCs of morning calisthenics

Morning calisthenics can keep bodies healthy and minds sharp. Kids learn and retain more if their bodies are active during the learning. Call out the letters in order with each jumping jack (either seated or standing) or spell words with each jump rope rotation or sit-up.

Lunchtime munch time

Alphabet soup, anyone? Think of it as digesting knowledge! Add Cheez-It Scrabble Junior crackers by Sunshine to make it a full-on letter lunch!

Chalk on sidewalk, letters in lake

Whether on dry land or at the shore, literacy learning can be in tow. Create an alphabet hopscotch path on the sidewalk or play giant games of hangman. For ready-made letters, Jumbo Bananagrams is the perfect game for taking to the beach. The bold rubber letters float. If you prefer the quieter corner of your yard, stock your kiddie pool with a supply of plastic letters and equip your kids with aquarium nets to catch the word of the day. Once caught letter by letter, spell it out and throw the letters back for a bigger catch! If indoor air conditioning is more to your liking, try uKloo, a treasure hunt game with three levels of reading clues to get kids reading and searching for the hidden surprise.

Spaghetti spelling

Playing with your food is usually frowned upon, but not when it helps sneak in learning! Use cooked spaghetti noodles to lay out cursive letters, or if printing is more your speed, penne or

rigatoni noodles let you create block type letters. Who knew rigatoni is the new font?!

authority on play and children with special needs.

Wind down with technology

Ellen Metrick is director of Industry Relations & Partnerships at the National Lekotek Center and a member of the Chicago Special Parent advisory board.

Kids may wind down with a good book if it’s read through technology by a grandparent or faraway friend. Take a look at the Kindoma Storytime app. This amazing app brings together books through video chat. Kids can enjoy a book read aloud by a distant loved one. The book pages are synchronized and both sides have the ability to point to pictures and words, flip pages and talk. For more information on products for kids, go to ableplay. org. AblePlay is sponsored by the National Lekotek Center, an

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Sweet dreams Special Spaces celebrates its 400th magical bedroom makeover

STORY AND PHOTOS BY KRISTINA LAZZARA

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uca’s dreams reach beyond the stars, and only an outof-this-world intergalactic bedroom would do. Lanh leaned toward sophisticated posh pink and Lien longed for a place for sleepovers that also reflects her love for animals. Special Spaces, a 10-year-old national volunteer organization that gives bedroom makeovers to children with life-challenging illnesses, sent the family away for two days while its fairy godmothers and godfathers made the kids’ wishes come true. Luca, Lanh and Lien are the newest additions to 77-year-old Margaret Fleming’s large Oak Park family. Luca was born in Chicago, while Lanh and Lien were adopted from Vietnam. All three have serious life challenges. And Special Spaces picked them for its 400th bedroom makeover. “It’s overwhelming that so many good people would volunteer for this kind of thing,” Fleming says. “Painters, electricians, carpenters, the furniture donated; everything was new. It just went on and on. When we left for Nashville there were already over 30 cars out here, this army of people. Decorators, people who drew murals. It’s just unbelievable!” While they were away, the volunteer crew designed, refinished and built three bedrooms essentially from the ground up. No wish is ever too grand or bizarre for Special Spaces.

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The organization depends on sponsors and donations to make each child’s dream bedroom become a reality. For the Fleming home, Crescent Electric

Supply Company provided labor and supplies. American Mattress, another local sponsor, provided four mattresses and is running a special promotion to help the

family with other basic needs. Over the past 32 years, Fleming has adopted nine children. She is the founder and director of Adoption Link, an Oak Park-based adoption agency that specializes in adoption of minority children and/or children with special needs. “I think [Special Spaces’] work is not as well known in Illinois, and I’m hoping there’s something we can do through our family’s experience because the work that these people do

When Luca, middle, grows up he wants to be an astronomer and an astronaut. He loves his new glow-in-the-dark galactic bedroom. When he’s not shooting for the stars he’s shooting hoops with his new basketball hoop.

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is precious,” Fleming says. “It makes a great difference to children who endure a lot of pain and a lot of discrimination and a lot of feeling different in the community.” The waiting list for 2015 has already started, which means the organization is looking for people to start local chapters. The most recent chapters are in Lake Zurich and Chicago. When they saw their new rooms, Luca, Lanh and Lien jumped up and down and hugged the Special Spaces team over and over again. Luca’s response to his new room? “Amazing. Awesome. Cool! I have lots of words to say.” Kristina Lazzara is a Chicago native and intern at Chicago Parent. She is a sophomore at Marquette University.

Lien requested a futon and television in her trendy zebra print bedroom for sleepovers with all her friends.

Though Lanh’s favorite color is purple, she wanted a posh pink bedroom. She adores how bright and fun pink is. ChicagoParent.com |

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What Every Mom Needs to Know About... Speech and Hearing Development of Her Child Download your ebook at sertomacenter.org/moms-ebooks SERTOMA SPEECH & HEARING CENTER HOMEWOOD PALOS HILLS ROMEOVILLE 708-599-9500

Easter Seals DuPage & Fox Valley can help all children Make the First Five Count! From developmental screenings to pediatric therapies, we are a resource for all children. A great first step is to take our online screening tool at: AskEasterSeals.com Our vision is that all children receive the developmental services they need to live their best life. Villa Park Naperville Elgin 630.620.4433 | EasterSealsDFVR.org

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• Developmental Delay

• Articulation

• Cognitive Impairment

• Language and Literacy

• Autism

• Hearing Loss

• Stroke-related Aphasia

• Social Communication

• Traumatic Brain Injury

• Voice

• Feeding and Swallowing • Stuttering

• Augmentative/ Alternative Communication • Apraxia and Dysarthria • Bilingualism • Memory

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NEWS YOU CAN USE

COMPILED BY KRISTINA LAZZARA

New early signs of autism ID’d

Researchers: Severity of autism can be discovered through early motor skill deficiencies

R

esearchers at Oregon State University recently found a relationship between the development of basic motor skills and the severity of autism in very young children. The discovery is believed to be the first to show a direct link between the two. The research found that children with autism were nearly a year behind in motor skills compared to their peers. The new findings might give treatment plans a complete overhaul, with development of fine and gross motor skills added to

put them on the same playing field as peers. “It’s not that big a deal if we’re talking about older kids, but for kids between 1 and 3 years old, those are substantial deficits, almost one-third of their life,” Megan MacDonald, an assistant professor in OSU’s College of Public Health and Human Sciences, says in a news release. Introducing adaptive physical education programs can give children with autism a headstart just like other programs do with IQ, language and play skills, she says.

Social skill mentoring available The Autism Family Center is offering peer mentoring for those 12 and up. The mentoring works to develop skills that help communication skills and social interaction. It is just one of the ways the Autism Family Center is reaching out to the autism

community. It also will open a day care in Winnetka this summer. For information, visit autismfamilycenter. com.

New toys teach kids about dental hygiene Do you have a stubborn child when it comes to keeping those pearly whites shining? You buy that light up, singing toothbrush hoping it will help them remember to brush. But when it fails, StarSmilez, a

sponsor of Special Olympics, has a new idea. Its colorful puppets help kids learn how to properly take care of their teeth and inter active games reinforce the message. $96, starsmilez.com.

Cued Speech gets nod of approval The Illinois School For the Deaf recently incorporated Cued Speech into its curriculum, an idea championed by the A.G. Bell Montessori School. A.G. Bell Montessori School in Wheeling is the nation’s only Montessori school that mainstreams both deaf and hearing children together using Cued Speech. Cued Speech is a way to make phonics visible, with every consonant sound having a different hand shape and every vowel sound having a placement around the face. Cued Speech also helps with lip-reading because all of the cues are done around the mouth and connected with the mouth movement, says Karla Giese, director of deaf services at A.G. Bell Montessori. For years, American Sign Language was considered the standard for deaf students, but Cued Speech is slowly growing in popularity. With an emphasis on personalized and individual learning, students can learn at their own pace. Nearly all of the deaf or hard-of-hearing students at Montessori are at grade level or higher on standardized tests, the school reports.

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Tailored education paired with therapeutic supports based on DIR/Floortime methodology. For children with diverse learning styles and developmental needs in kindergarten through second grade. • Autism Spectrum Disorder • Sensory Processing Disorder • Attention Deficit Disorder

CityElementary.com 16

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| ChicagoParent.com

7/3/14 1:57 PM


Cohen’ s Cohen’s journey journey Meet the Chicago family determined to spread the word about the second most common genetic disorder you’ve never heard of

BY JACKIE MCGOEY

C

hicago elementary school teacher Lindsey Garcia was halfway through her second pregnancy when she and husband Ryan were told that the baby, a boy they decided to name Cohen, would be born with a rare congenital heart defect called Tetralogy of Fallot. The condition would require open heart surgery at birth or soon after. While still trying to wrap their head around the shock of this diagnosis, the Garcias were hit with even more bad news. Three rounds of genetic testing revealed Cohen tested positive for 22q11.2 deletion syndrome. “I had pretty much eliminated the thought of him having a genetic disorder out of my mind,” Lindsey says. “I mean, what were the chances of having both? When the

geneticist told me, I almost swerved into another lane of traffic.” 22q is caused by a missing piece of the 22nd chromosome. It’s a tricky disorder because it’s so difficult for doctors to diagnose. It can present itself in up to 180 different symptoms, such as a heart defect that would require open-heart surgery, a low immune system due to a missing thymus gland, facial abnormalities, low calcium which can cause seizures and partial mental retardation. These symptoms range in severity from mild to critical, and no two children are alike. Cohen was lucky to receive his diagnosis in utero, as many children with 22q go years without one. “What we were told in the beginning is that the lives of people who have 22q instantly start to get better from the day they’re diagnosed,” Ryan says.

Not ones to feel sorry for themselves, Ryan and Lindsey shared the news with their families and immediately got to work researching 22q. “Lindsey got on Facebook and got into every possible 22q group,” Ryan says. “I wanted to know everything, as much as I could because that’s the type of person I am,” Lindsey says. “I figure knowledge is power and nothing can be as scary if you understand it better.” According to the Dempster Family Foundation—a resource the Garcias turned to early on in their journey and continue to work with today—22q presents itself in 1 in every 2,000 to 4,000 live births, making it the second most common genetic disorder after Down syndrome. Yet, very few parents and health professionals have ever heard of it.

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“I want him to grow up always knowing that he is everything Lindsey and I could have eveer hoped for.” — Ryan Garcia

Postcards from Cohen

Lind Li nd dse ey bl blog o ge og ged about Co ohe h n’ n’ss time tiime e in th he ho hosp s ital at sp p st po stca c rd ca rdsffro romc mcoh mc o en.blogspott.coom. oh m. Follow along to lookk ba acck k on hi his st stru ru ugg ggle l s, look forw le rw ward ard to his future triump ar mphs mp hs aan nd lear leear a n mo m re e aboout u 22q.

22q 2 2

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“It’s amazing that something affects so many people, but it doesn’t really get any airtime,” Ryan says. “It just seems like an underserved community, so I want to do whatever it takes to get more people thinking about it.” Ryan is no stranger to doing whatever it takes to raise awareness for causes he’s passionate about. Remember that crazy guy with the big heart who pledged to perform one random act of kindness every day for a year back in 2012, in honor of his daughter? That was Ryan. His new endeavor, State of Kind (366randomacts.org), has Ryan performing an act of kindness in each state. And while 2012’s 366 Random Acts of Kindness was for big sister Isla, now 2½, State of Kind is for Cohen and raising awareness for 22q.

“Every act may not be for somebody with 22q, but it’s going to be the overarching theme,” Ryan says. After a whirlwind night of almost being born on the bathroom floor of the Garcias’ new home, Cohen made his way into the world on Nov. 29, 2013. And after months of worry about what that moment would be like (Would he be blue? Would he be rushed to the NICU?), Ryan and Lindsey got some good news. “He looked beautiful,” Ryan says. “He came to us completely pink, had better Apgar scores than our daughter, and they said he looked great,” Lindsey says. Cohen’s heart was in better shape than doctors had initially thought. He didn’t have

Dempster Family Foundation Former Chicago Cubs pitcher Ryan Dempster and his family were inspired by his daughter Riley, who was diagnosed with 22q shortly after birth, to use their influence to raise awareness for 22q. Visit DempsterFoundation.org for information and resources about 22q, and ways you can get involved in their awareness campaign.

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Tetralogy of Fallot after all. He had a small hole in his heart, or ventricular septal defect (VSD), a common condition that often heals on its own. “This was a huge surprise and I think we thought we may be in the clear,” Lindsey says. Unfortunately, Cohen faced other struggles. His breathing was a big concern from early on. He had apneic spells, where he would stop breathing for periods of time. He was losing weight fast and needed a feeding tube. For more than four months, Cohen continued to have difficulties breathing, at one point even being put into a medicated coma and on a ventilator for nine days, which Lindsey describes as the scariest time of his entire hospital stay. He was finally released from the hospital (for the longest stretch of time so far—two months and counting!) in early April. Cohen, now almost 8 months old, is attached to oxygen around the clock and to his feeding pump for 16 hours each day, but is enjoying time at home.

He spends his days receiving physical therapy—he’s a tummy time champ—and hanging out with Isla. “We thought it was going to be a tough transition bringing home somebody with oxygen and all these machines (Cohen’s ‘bells and whistles’) but she doesn’t even notice,” Ryan says. “It’s her little brother and she wants to take care of him.” To date, Cohen has spent more than half of his short life in the hospital and has received close to 25 procedures, but his parents say his prognosis is good. “Cohen is a fighter,” Lindsey says. “It’s amazing how much he has been through and yet he is still meeting many of his milestones.” “He is the happiest baby of all time,” Ryan adds. “I want him to grow up always knowing that he is everything Lindsey and I could have ever hoped for when we found out we were having a boy.” Jackie McGoey is the digital content manager at Chicago Parent and the mom to Eden.

| ChicagoParent.com

7/3/14 12:49 PM


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Opening in late July An in-depth experience focusing on Disability Awareness The Children’s Museum in Oak Lawn is a 501(c)(3) non-profit organization whose mission is to positively impact a child’s potential in life through play-based education. ChicagoParent.com |

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Pump It Up is proud to offer Sensory Jump, a program that’s a safe, fun, sensory-friendly playtime for all children on the autism spectrum. Children who attend will have the opportunity to make new friends, jump, slide and play sensory friendly games within a controlled, safe environment. The program is open to children on the autism spectrum and their siblings only. ***COUPONS ARE NOT ACCEPTED*** • Monday, August 4th • 6:15pm - 8:15pm • $8 per child • Sensory Night is usually held the first Monday of the month, check our calendar for future jumps. Pump It Up of Orland Park 11411 W. 183rd St. www.pumpitupparty.com (708) 479-2220

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| ChicagoParent.com

7/3/14 4:19 PM


One size doesn’t fit all How to make therapy work for your family BY GILLIAN MARCHENKO

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pecial needs families have certain things in common: extra medical appointments, individualized education plan meetings, more effort and patience to see our kids reach their milestones—and therapy. Ask any parent, and he or she will probably say that therapy has taken up a huge chunk of family life. Decisions about therapy are daunting and confusing. How do we figure out such an important part of life? Where should it take place? How often? When is therapy no longer needed? How will it affect the rest of our family? As a special needs mom, I’ve worked through therapy questions for years. I have four children, and two of them have special needs. My girls participated in Early Intervention and currently get therapy at school. They also receive additional speech and occupational therapy weekly at home through Aspire Illinois. We’ve placed them in therapy groups for socialization, in one-on-one therapy at home, and in programs that take place in hospitals and therapy centers. Therapy has made our lives more complicated and busy. Sometimes our children without disabilities complain because most of our afternoons are tied up. But, for better or worse, I’ve felt a responsibility to make sure my kids are benefitting from anything that can help them develop. Sometimes I, too, wish we had a free afternoon instead of a session. Overall, though, therapy has been a good, albeit overwhelming, experience for our family. On the other hand, in the memoir, Life with a Superhero: Raising Michael Who Has Down Syndrome, Michael’s mom, Kathryn Hulings, describes how she canceled all of his therapy sessions and the family took on the role of therapists using all kinds of unprecedented “therapy.” It seemed to work. Michael reached developmental goals just fine. Who’s right? Am I right in having my girls do as much therapy as we can find? Or is Michael’s mom right in shrugging off classic therapy and assuming her son’s developmental growth herself? The answer is this: we both are right. When it comes to therapy, one size does not fit all. Less therapy? More? Take a season off? The answer to all of this is yes.

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Our cover boy, Vashon Morgan, loves to play with his dad Vashon. ChicagoParent.com |

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THERAPY

from page 21

In the midst of decisions, research and advice, let’s remember that a parent houses a crucial tool in her special needs box of tricks: her gut. The longer I am a mother, the more I realize that each of us has to figure out what is best for our family. Anne Grunsted, a Chicago mom to Bobby, who has Down syndrome, has a balanced perspective. “Therapy is important, but it’s also part of a long list of life stuff that is important. I think it is OK to sometimes admit that squeezing in one more session a week is not the priority,” she says. Sarah Britton, mom to 4-year-old Tinley, who has Apert syndrome, appreciates breaks. “Tinley is still in therapy, but we will be taking the summer off. We’ve done this every summer since she was born. Everyone needs a break!” Therapy is going to look different for each family. And about trusting your gut? It is good to listen to your intuition, but it is also important to reinforce what your gut is telling you by talking to your child’s therapists and other parents and friends before changing up or ceasing therapy all together. Kim Russell, an occupational therapist at Aspire, understands that parents make different choices about therapy.

Think of the Possibilities...

Education programs for children with special needs

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Gillian Marchenko is a Chicago mom of four, including two with special needs.

Vashon and his mom Shelia.

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“I’ve seen cases where it may be beneficial to take a break from therapy. My recommendation is to have a conversation with the therapist before deciding. Remember, therapists are knowledgeable. They are on your side,” she says.

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Here are a couple other tips regarding therapy: Take a look at how that particular therapist interacts with your child. If it doesn’t seem to be working, you just might need to find someone else that fits better. If you want to stop therapy, think about whether it is a therapy sabbatical or a life change. If it is a sabbatical, mark your calendar a few months out to revisit the issue again. Therapy requires thoughtful consideration, research and parental intuition. The key is being open and educated, to trust our gut instincts and to learn from each other.

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| ChicagoParent.com

7/3/14 12:50 PM


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Comprehensive Services. Convenient Location. Unparalleled Care. Trumpet Behavioral Health® knows the importance of compassionate, individualized care and we’re proud to announce our new Chicagoland Autism Center that’s focused on giving your child just that. Call today to speak with one of our Board Certified Clinicians. Insurance team available to help navigate coverage.

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Students Flourish at Cove

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tudents at The Cove School benefit from our intensive individualized instruction and highly specialized team, while learning in an environment that is specifically designed for children 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 Tuesday, March 18, 2014 at 9:00 a.m. RSVP to Abby at alasky@coveschool.org

Photo by Jade Albert

Learn more at

autismspeaks.org/signs Some signs to look for:

No big smiles or other joyful expressions by 6 months

No babbling by 12 months

No words by 16 months

穢 2012 Autism Speaks Inc. "Autism Speaks" and "It's time to listen" & design are trademarks owned by Autism Speaks Inc. All rights reserved. The person depicted is a model and is used for illustrative purposes only.

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Find someone who is ahead of you on this journey. It can be easier to follow in their footsteps than to always have to create your own path.

Got five minutes? A primer on being a parent to a child with special needs BY CARA LONG

L

et’s be honest, I can’t possibly tell you everything you need to know about raising a child with special needs in a single article. But as a parent of a child with special needs, I also know your time is limited. So if I had just five minutes of your time, this is what I would want you to know. First and foremost, be patient with yourself. For those of you who are new parents, give yourself some time to love and accept the child you have been blessed with. Know that it takes time to

accept your child’s disability. It is difficult to raise a child with special needs, and you will always have to advocate for your child, but the rewards are great and you are not alone. Remember to take care of yourself, find time for your partner, your other children, and your friends and family. This is not a sprint, but a marathon! Try to find other parents who share your struggles and joy. Find someone who is ahead of you on this journey. It can be easier to follow in someone’s footsteps than to always have to create your own path. Knowing that you will be your child’s first and strongest advocate, it is important that you become as educated as

If you are already aware of delays, your child can be evaluated and may be eligible to receive services through Illinois’ Early Intervention System. you can about your child, their diagnosis, their unique strengths and challenges. Research their doctors, therapists, treatments and education to make sure your child has every opportunity to be successful.

Early is always better It also is essential that your child receive services as early as possible. Know that the first five

years are crucial in any child’s development. If you have questions about your child’s development or are already aware of delays, your child can be evaluated and may be eligible to receive services through Illinois’ Early Intervention System. Child & Family Connections is the starting point for children under 36 months old and a referral can be made by you, a family

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FIVE MINUTES

from page 25

member, doctor, day care provider or anyone concerned about the development of your child. To find out more, use the Illinois Department of Human Services website Office Locator to locate an Early Intervention office in your area or call (800) 843-6154. Currently, to qualify for EI services, your child must either have an eligible diagnosis or demonstrate a 30 percent delay in at least one of five areas (physical, cognitive, communication, social-emotional and adaptive). If your child does not qualify and you still have concerns, you can explore other approaches to intervention using your medical insurance or paying privately. Once your child turns 3, they may be eligible to receive services through the public school system’s Early Childhood Education. This transition process should begin at age 2½. If your child is enrolled in

EI, your service coordinator will help you during this transition process. If your child is not using Early Intervention services, you can do this transition on your own. To begin this process, call your neighborhood elementary school and request an evaluation to see if your child qualifies for services. If your child does not qualify for special education services through the public school but still has delays or you have concerns, talk to your pediatrician and seek out services on your own. Although your local school district is primarily responsible for providing special education services to your child, you may also want to explore completing a PUNS—Prioritization of Urgency of Need for Services— survey. It is a statewide database that records information about individuals with developmental disabilities who are potentially in need of services now or in the

Once your child turns 3, they may be eligible to receive services through the public school system’s Early Childhood Education. future. The state uses the data to select individuals for services as funding becomes available. Your child will not be eligible for any government benefits unless they have completed their PUNS and update it yearly.

Forecasting the future It is never too early to start planning for your child’s future by becoming educated about special needs trusts and completing your will.

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www.upsfordowns.org UPS for DOWNS is a parent directed non-profit organization offering support, education, and encouragement for parents, families, and others who love and care about persons with Down syndrome. We inspire community acceptance by sharing with others the presence, potential and abilities of people with Down syndrome.

It is never too early to start planning for your child’s future by becoming educated about special needs trusts and completing your will. Once your child turns 18, the state no longer considers the family income, only your child’s. If your child has more than $2,000, this will disqualify them from many government benefits, including Social Security Income. However, you can save money for your child’s future by creating a special needs trust without disqualifying them from these benefits. Parents need to consult a special needs attorney to set up this trust. Planning for transition into the adult world for children with special needs should begin at age 14½. At this time, transition should be discussed and transition goals written during your child’s Individual Education Plan meeting at school. If you need assistance, transition specialists can attend your child’s IEP meeting to help. Know that in Illinois, your child can remain in school until they turn 22 as long as they do not accept their diploma. Once your child accepts their diploma, the high school is no longer obligated to provide any support or services. These three years of transition can be a time for your child to investigate employment opportunities, work on vocational skills and explore additional education at a community college or vocational school. If your child will seek

Center for Autism, Sensory Processing and Related Disorders www.thecommunityhouse.org 630-810-1200 1048 West Ogden Avenue Suite # 200 Downers Grove, Il 60515

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employment in the community and can realistically do so independently, a Department of Rehabilitative Services representative should be present at your child’s IEP meetings. If your child will not be able to work independently once they leave high school, it is important to start exploring other options such as a day program or sheltered workshops. Your school should be able to provide you with organizations that offer these services in your area. Age 18 is a busy time if you have a child with special needs. No matter your child’s disability, once they turn 18, in the eyes of the law, they are considered an adult and are given the responsibility to make decisions for themselves unless you have power of attorney or guardianship. If your child is unable to make medical or financial decision independently, it is important that you consult an attorney to determine which option is best for your child and begin the process. At 18, your child may qualify for Social Security Income Benefits and Medicaid. Applications for Social Security Income can be completed online at ssa.gov/disability, by telephone at (800) 772-1213 or in

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Charlie’s Gift

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FIVE MINUTES

from page 27

person at your local Social Security office. Visit the Social Security Administrative website to make sure you have all the necessary documentation and information before beginning this process. Once your child has been approved for Social Security benefits, it will be easier to apply for Medicaid. To find out more information on applying for Medicaid or to complete an application, visit getcoveredillinois.gov. In Illinois, your disabled child can stay on your commercial insurance until you discontinue your policy. You should consider keeping your child on commercial insurance if possible since this will give them more options for medical care. When the time arrives for you to apply for Medicare, you also should inquire as to whether your child might qualify.

A parent’s true fear Last, but not least, the thing I fear most as a parent of a child of special needs is what will happen to my daughter once I am no longer able to care for her. Although I will never be able to calm all my fears, something

Age 18 is a busy time if you have a child with special needs. No matter your child’s disability, once they turn 18, in the eyes of the law, they are considered an adult. that helps is keeping a Letter of Intent. A Letter of Intent is a document written by you or other family member that describes your child’s history, their current status, and what you hope for them in the future. I wish I had more time to talk to you about how to write measurable IEP goals, answer insurance questions, or tell you about the wonderful programs offered through

your Special Recreation Program (specialrecreation.org). If I had more time I would share with you all the rewards and joys I have enjoyed raising my daughter, discuss with you strategies in working with your school district to get the best services for your child or how to organize all the paperwork we collect. I wish I could be there to give you the pep talk you need before you go into your IEP meeting or calm your fears before your child has to go in for a medical procedure, but my time is up and I have probably already overwhelmed you. I wish I had the opportunity to touch each one of your lives since mine has been so blessed, but I know that is not possible. My hope is that you will find someone in your life that can support you on this journey and then you will turn around and provide that support to the next family who needs it. Cara Long is a state-credentialed parent liaison at Easter Seals DuPage and the Fox Valley and a member of Special Parent’s advisory board. She specializes in helping parents navigate special needs. She is a mom of a child with special needs.

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For more information, please email info@lifestylesacademy.org or call us at: 708-480-2085.

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| ChicagoParent.com

7/3/14 3:38 PM


here we come

TRANSPORTATION

Where to find help If you have any ques tions about your child’s development, talk to your pediatrician. You can also complete the Ages and Stages Questionnaire online at eastersealsdfvr.org to help you determine if your child’s development is on time and alert you to concerns you can share with your child’s doctor. A useful booklet, “When I’m 3, Where Will I Be? A Family’s Transition Workbook,” can be found online at isbe.state.il.us/ earlychi/pdf/transition_work book.pdf. To find out how to complete your PUNS survey, visit the Illinois Life Span website at illinois lifespan.org. Illinois Life Span is a statewide information, referral and advocacy website for people with developmental dis abilities and their families and can be useful in finding resources. The state of Illinois also offers waiver programs for individu als with disabilities, where the families’ income is waived to qualify. Visit illinois.gov/ hfs/MedicalPrograms/HCBS/ Pages/default.aspx. If your child has mul tiple health problems and sees numerous specialists, you may want to seek out a physician that provides a Medical Home. Although the name is confusing, a Medical Home is a physician practice that provides special health services and care coordination

for children with multiple health needs. The University of Illinois at Chicago’s Division of Specialized Care for Children provides free care coordination for all eligible children and financial help to those who meet their income guidelines. You can find out more information or see if you qualify at dscc.uic.edu or (800) 322 3722. The ARC of Illinois Family to Family Health Information and Education Center is a statewide health informa tion resource for families of children and youth with special needs. They can be contacted at familyvoices illinois.org or (866) 931 1110. A practi cal transition resource can be found online at Building Bridges to the Future Manual, seguin.org/ adult_ser vices/build ing_bridges. html. For more information on writing a Letter of Intent and a great resource on special education law and advocacy for children with disabilities, visit wright slaw.com/info/future.plan. index.htm. The Illinois State Board of Education has a help ful document, “Educational Rights and Responsibilities: Understanding Special Education in Illinois,” on the educational rights of children who have disabilities and receive special education services. Find it at isbe.state. il.us/spec ed/html/parent_ rights.htm.

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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:

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A+ school days 10 ways to help your child make a positive start to the new school year BY GILLIAN MARCHENKO

B

ack-to-school time is a charged part of the year filled with excitement, busyness and anxiety. Kids pick out first day of school outfits. Parents buy classroom supplies and root around the pantry to see if last year’s lunchbox will work again or can be repurposed for the next child in line. Earlier bedtimes resume, classroom lists are posted, and children fall asleep dreaming of a playground rendezvous with friends. Most families relish the preparation.

But for families affected by special needs, the new school year has added challenges and concerns. How will my child interact with her new teacher? What can I do to ease him into a new routine? Will she be able to keep up with the curriculum? Is his placement the best? Where did I put her most recent IEP? Chicago public schools start Tuesday, Sept. 2. Many suburban schools start in August. Here are 10 ways to help your child with special needs start the new school year on a positive note:

1

Resume an earlier bedtime routine. Summertime generally means later nights and sleeping in. Children with special needs may need a little more time to get used to a new routine. Ease your child back into an earlier bedtime at least a week before school starts. Give their little bodies the opportunity to adjust to a new sleep pattern before adding revved-up nerves for the big day. Try to keep their nightly routine the same.

how to customize your own. Take pictures of the school, the teacher and the classroom, and make a story geared specifically to your child. Read it every day leading up to the first day of school.

4

Remind him of what he enjoys about school. This is something you can do throughout summer, too. Focus on positive things. Talk about

2

Visit beforehand. Call the school and schedule an opportunity for your child to see his new classroom and meet his teacher. While you are there, make sure you tour the cafeteria, playground and other rooms like music or gym. The more your child sees, the less anxiety he will have on the first day of school.

3

Create a social story about going back to school. Social stories help children learn social norms and transition into new environments with less trepidation and anxiety. Most stories are printed out books with pictures and words. Google ‘social stories for kids with special needs’ to find premade books or look for directions on

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I go to bed early to be ready for school.

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school activities he enjoyed, what classes he liked, who he sat with at lunch. Keeping school on his radar will give him a point of reference when you talk about returning.

I meet my teacher before school starts. I tell her all about me

5

Review expectations of school behavior and set up a reward system. Kids do well with boundaries. Be sure to review expected behavior at school. Talk about things like personal space, following directions and taking turns with other kids. It might help to set up a reward system at home that can transition to the classroom. For example: ‘If I listen well and get my daily sticker, Mom will watch a special show with me Friday night.’

so that she knows how best to help me learn.

6

Provide information to the teacher. Give an ‘all about me’ handout not only to your child’s teacher, but also to the principal and any other teachers or therapists who will interact with her. Include likes/dislikes, allergies, favorite subjects and activities, behavior strategies, common challenges, information about your family (siblings, pets), food preferences, fears, and anything else you can think of that will help staff know, appreciate and help your child succeed.

7

Locate your child’s most recent IEP. Oh, the blessed IEP. Review it and make new copies to hand out to teachers on the first day of school. Chances are they already have it, but it never hurts to provide another copy with a note requesting frequent review to ensure that goals are being sought after and met throughout the school year.

8

Figure out an appropriate method of communication with the teacher. Communication is your job. Teachers want to keep up with parents, but the number of kids they need to manage compared to you is exponentially more. Decide a communication method that works best for you. A journal passed back and forth in the backpack? Email? Monthly face-to-face meetings? It is up to you to initiate healthy and reoccurring communication. Have a back-up option in case your preferred method doesn’t pan out once school starts.

9

Do a presentation about your child’s disability in the classroom. Knowledge is power. Within the first week or two of school, visit your child’s class to talk about special needs. Find a book

When I do well in school I get to watch my favorite movies with my mom as a reward.

to read on the topic and prepare a quick object lesson appropriate to the grade. For younger kids, an example is as simple as “Who here has shoes?” (Twenty-nine hands shoot up in the air.) “What color are your shoes?” (Twentynine voices sing out red, black, yellow, pink.) “Just like we all wear shoes that are a little different from each other, we all are people who are a little different from each other, too.” Print out a take-home sheet for the kids to talk about with their families around the dinner table.

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Do whatever you can to set her up for success. You are your child’s biggest advocate, supporter, and yes, educator. Break down suggested tasks into doable chunks. Take deep breaths. And convey excitement and support to your child as the school year approaches. Gillian Marchenko is a Chicago mom of four. Her memoir, Sun Shine Down, about her daughter with Down syndrome, published last year.

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Chicago Parent is your special needs resource Chicago Parent covers special needs topics all year round. You can also find these supplemental magazines and special sections.

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Chicago Parent Special Needs editorial features

SUMMER 2014

AN EMPOWERMENT GUIDE FROM

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LOCAL RESOURCES YOU NEED

February Winter Chicago Special Parent

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July

START SCHOOL OFF RIGHT

SPECIAL NEEDS 101From a mo

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Specıal Parent

Seven kids and counting ■

IEP:The good

& the bad ■

Parenting without a net

MAY 2014 | FREE

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SEPTEMBER 2013 | FREE

WINTER 2014

CONNECTING WITH FAMILIES

Life on the wild side

AN EMPOWERMENT GUIDE FROM

CONNECTING WITH FAMILIES

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EMBRACE your child

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other tips after a diagnosis

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The sweet life

WAYS to love May

One mom’s special needs journey

Make room for your

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CHAMPIONS for a cause

What

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PHOTOS BY RICH HOWE

The Voice Box is ideal for kids who do not respond to traditional speech-language therapy.

Technology changing lives Advances are creating new ways for communication and learning BY KRISTY MACKABEN

“F

orget it.” That’s what Georgia Bryan used to tell her friends when they couldn’t understand her. Georgia, who turned 6 in June, did not speak any words at 2. By the time she turned 5, she was speaking, thanks to speech-language therapy, but very few people could understand her. This was frustrating for a little girl who was desperate to make friends and express herself, says her mother Sarah Bryan, who is a special education teacher. The family lives in Lombard. “She was pretty much not

intelligible,” Sarah says. “She would get frustrated. She would cry.” A few months after Georgia started kindergarten, her parents decided to contact Easter Seals DuPage and Fox Valley, hoping Georgia could receive help with articulation and other speech issues. At Georgia’s first visit, speech-language therapist Kristin Miller noticed that she was “tongue tied” (the medical term is Ankyloglossia), which is caused by a short, thick frenulum connecting the underside of the tongue to the floor of the mouth. Ankyloglossia can affect feeding, speech and other issues. After undergoing a procedure to

release her frenulum, Georgia needed therapy to learn how to use her tongue correctly. This is when Georgia was introduced to the Easter Seals’ Voice Box—a motor speech lab that assesses and treats children with speech problems through technology, such as Visi-Pitch, SmartPalate and Speech Buddies. The idea behind the Voice Box is to enter a child’s world by using computer games and technology. “Motivation is huge. As kids use technology throughout the day or at home, it’s more motivating than just regular articulation therapy,” says Miller. “It allows for more creativity.” With the help of the

equipment, Georgia is improving her articulation and also learning where to place her tongue while making certain sounds. These days Georgia sounds like a typical 6-year-old. She still has trouble with the “r” sound, but she can carry on a conversation with people understanding her almost all of the time. “She’ll be at Easter Seals for one year in September. The progress has been phenomenal,” Sarah says. “I thought she’d be in speech until she was 15. She just wasn’t getting it. I don’t know where she’d be without therapy.” Many children, like Georgia,

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TECHNOLOGY

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have made significant progress because of technology. In a world of iPads and smartphones, technology has become an essential part of treatment for children with special needs—from physical to emotional and cognitive. Not only can technology provide more accurate data and measurement tools, but it also provides motivation for children. “Especially as technology has advanced so much, it’s a huge a part of all of our therapy programs,” says Theresa Forthofer, president and CEO of Easter Seals DuPage and Fox Valley. “From simple equipment like iPads to much more advanced equipment like the Voice Box, technology is really a big part of therapy.” Using technology as a measurement tool, therapists can show parents, teachers, insurance companies and granting organizations the data. “We actually have the data to show improvement. The parent can see changes and we can see changes, but now we can really show the difference,” Forthofer says. “The important thing is there are so many opportunities out there to help kids advance more quickly through technology.” Here are a few of the technological advancements that are having significant impacts on children with special needs. The Voice Box: During therapy sessions, a specially molded palate is placed inside the child’s mouth and is connected to a computer. The kids play computer games that visually show them where their tongue is touching the roof of their mouth while saying certain sounds. The SmartPalate program guides their tongue to the appropriate location to produce the sounds correctly. Tele-Therapy: Therapists conduct sessions via a secure online application called GoToMeeting (similar to Skype). Speechlanguage and assistive technology services can be provided through tele-therapy and more services may be available soon. Teletherapy has been invaluable to Chris Sawka, 26, of Buffalo Grove, who was diagnosed with Cerebral Palsy as an infant. For years Chris has been undergoing therapy using augmentative communication services, which have helped him make great strides in communicating with others. Tele-therapy has helped Chris undergo therapy from his home. “Wherever he is he gets his therapy. He never has to miss a therapy,” says his mom Suzanne. Connectivity guided neurofeedback: At The Neuroconnection in Naperville, experts are changing behavior by remapping the brain and rebuilding the brain’s neuroconnections.

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Easter Seal’s SmartPalate program is seeing great results.

“Especially as technology has advanced so much, it’s a huge a part of all of our therapy programs.” THERESA FORTHOFER

President and CEO of Easter Seals DuPage and Fox Valley Computer software is used to train the brain to improve neuro-psychological conditions, such as autism, anxiety, attention deficit disorder, learning disabilities and brain injuries. The connectivity guided neurofeedback uses brain mapping tools to determine how the brain is communicating with itself, says Ann Rigby, owner and founder of The Neuroconnection based in Naperville. After about 20 to 30 sessions, ADHD symptoms may be improved and after about 60 sessions, children with autism may

experience, on average, a 50 percent reduction in symptoms. Because of the changes made in the brain, psychotropic medications can often be reduced or eliminated. “We’re doing something using technology to improve lives in a very dramatic way,” Rigby says. “It is the way we analyze the brain maps that makes connectivity guided neurofeedback more advanced because this is what gives us accurate information to do the neurofeedback training for conditions such as autism, learning disabilities and other neuropsychological conditions.” Apps: Experts are quickly developing apps for the special needs community. Little City Foundation in Chicago has a few favorites for those with autism, including ProLoQuo2Go, a “customizable speech generating program.” Its staff also likes Bugs and Buttons, as well as Dots for Tots, to develop hand-eye coordination and motor skills. They also like Cause and Effect Sensory Light Box that encourages development and basic awareness of touches and gestures. All of the apps are disguised as fun, interactive games.

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Resources Adaptive Services, Autism Spectrum Disorders . . . . . . . 35 Blind or Visually Impaired, Deaf or Hearing Impaired, Disability Groups . . . . . . . . . 36

Find more information online

T

1063 W. Hawthorn Drive Itasca (800) 844-1232 autismbehaviorspecialists. com

ADAPTIVE SERVICES

The team works closely with families to determine socially significant goals to work on within the clinic, home and/or community environments that will best meet their child’s and family’s needs.

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 Liz DeCarlo at ldecarlo@ chicagoparent.com with your information or submit your information at chicagoparent.com/resources/ resource-submission-form.

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, ceilingmounted lift systems, home elevators and general remodeling to provide accessibility.

MobilityWorks Plainfield Location in Plainfield, Skokie, Villa Park (877) 275-4907 mobilityworks.com

General, Legal, Recreation . . . . . . 40

Provides wheelchair vans and adaptive equipment, including sales, mechanical service, rental vans and mobile consulting.

Support, Therapy . 42

RampNOW

Down Syndrome, Education . . . . . . . 38

Vocational . . . . . . 45

Chicago Autism & Behavior Specialists

2225 Tanglewood Drive Aurora (630) 892-7267 rampnow.com

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

AUTISM SPECTRUM DISORDERS Alexander Leigh Center for Autism 620 N. Illinois Route 31 Crystal Lake (815) 477-2522 alexanderleighcenter forautism.com

Nonprofit, full day,

year-round therapeutic day school approved by the Illinois State Board of Education. The school is for kids 3-17 with autism spectrum disorder, other health impairment, multiple disabilities, developmental delay and/or intellectual disability.

Autism & Anxiety Consultants, LLC 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 Behavioral Therapies Illinois and Wisconsin (224) 554-9634 autismbehavioraltherapies. com

ABA therapy provided in homes and pools.

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

Services include applied behavior analysis (ABA); individual, couples, and family therapy; as well as art, play and yoga therapies.

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

In-home custom-

ized 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.

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

The primary objective is to help each client attain his or her maximum potential in the least restrictive environment via behaviorally based intervention. Each client’s program is individualized.

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

Provides individual and group occupational, speech and mental health/behavioral therapy for children/ families through a family centered, teambased approach.

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

Meets on the third Saturday of each month from September through June with the exception of December. Each meeting features speakers. Meetings are 10 a.m.-12:30 p.m. at the Easter Seals School and Center for Autism at 1939 W. 13th St., Chicago. Free respite care offered during the meeting for children with autism. There is also the “A Team” Social and Recreational Club for perople with ASD ages 13-young adult and the “Junior A Team” for ages 5-12.

Continuum Autism Spectrum Alliance 3501 Algonquin Road Suite 210 Rolling Meadows (847) 925-5260 autismspectrumalliance. com

Serving children with complex medical needs and disabilities and their families.

Easter Seals Autism ProgramsJoliet 212 Barney Drive, Joliet (815) 725-2194 joliet.easterseals.com

Offers pediatric physical, occupational and speech therapy. A medChicagoParent.com |

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ical diagnostic clinic, social skills groups, sibling recreational workshops, family special recreation nights, inclusive birth to 4 day care, mental health therapy, educational materials and a parent support group.

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

This inclusive clinic assists families in determining their child’s needs. Families will leave the clinic with a diagnosis, initial treatment guidelines, and resources.

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. Serves clients ages 3 to their 22nd birthday.

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

Offers individualized after-school programs, vocational, life skills and transition to employment programs, along with diagnostic and family support services. Transition to adult services now include Project SEARCH Collaborates for Autism at Northwestern University, as well as

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AUTISM SPECTRUM DISORDERS programs that focus on developing critical soft skills for employment, internship experiences and life skills.

with support, information and resources.

Project Reach-Illinois Philip Rock Center 818 DuPage Blvd., Glen Ellyn (630) 790-2474 philiprockcenter.org

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

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

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

DISABILITIES GROUPS Aspire of Illinois Belle Center Program

Little City Foundation ChildBridge Services 700 N. Sacramento Blvd. Suite 201, Chicago (773) 265-1671 1760 W. Algonquin Road Palatine (847) 358-5510 littlecity.org/childbridge

Provides in-home personal and family supports, clinical and behavior intervention, 24/7 residential services, therapeutic art programs and special needs foster care and adoption services. The ChildBridge Center for Education provides 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, community-based residential services and the Little Friends Center for Autism.

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

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

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

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1754 W. Wilson Ave., Chicago (773) 878-7868 bellecenter-chicago.org

Free resources, referrals and monthly training. A second site has recently been opened at King Community Center, 4314 S. Cottage Grove, Room 103, Chicago, (312) 747-8571.

BLIND OR VISUALLY IMPAIRED The Chicago Lighthouse for People who are Blind or Visually Impaired 1850 W. Roosevelt Road Chicago (312) 666-1331 chicagolighthouse.org

Provides educational, clinical, vocational and rehabilitation services for children, youth and adults who are blind or visually impaired, including deaf-blind and multidisabled.

The Chicago Lighthouse Vision Rehabilitation Center (The Chicago Lighthouse North) 222

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

Houses a Birth to Three Early Intervention Program for infants and families; a state-of-the-art low vision care clinic offering optometry, psychological counseling and occupational therapy services; a Tools for Living retail store.

The Hadley School for the Blind 700 Elm St., Winnetka (847) 446-8111 hadley.edu

The largest provider of tuition-free distance education for individuals over the age of 14 who are blind or visually impaired.

The Illinois Association for Parents of Children with Visual Impairments P.O. Box 2947, Naperville (815) 355-2098 ipvi.org

Provides support information services to parents of visually impaired children. DEA

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.

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

Provides parents of children with hearing loss

Provides a progressive, family-centered inclusive approach to education and community life that supports children with disabilities and their families.

Association for Individual Development 309 W. New Indian Trail Court Aurora (630) 966-4000 the-association.org

More than 20 programs are available for individuals with physical or developmental disabilities, and those in need of behavioral health services or crisis intervention.

Esperanza Community Services 520 N. Marshfield Ave. Chicago (312) 343-6097 esperanzacommunity.org

Provides a full array of services, including a private, therapeutic day school for students 5-21, an adult day program and vocational skill-building program, a 24-hour residential program that supports independent living, an

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DISABILITIES GROUPS in-home case management program and more.

Arc Training Dept.

The Cystic Fibrosis Institute

Illinois Spina Bifida Association

2401 Ravine Way, #302 Glenview (847) 998-3434 cysticfibrosisinstitute.org

2211 N. Oak Park Ave. Oak Park (773) 444-0305 i-sba.org.

Source of assistance and advocacy for all CF individuals and families.

Services, information, referral, research and public awareness.

United Cerebral Palsy of Greater Chicago

Learning Disabilities Association of Illinois 10101 S. Roberts Road Suite 205, Palos Hills (708) 430-7532 ldail.org

Serves families of people with disabilities.

Park Lawn Association 10833 S. La Porte Ave. Oak Lawn (708) 425-3344 parklawn.com

Adult developmental

547 W. Jackson St. Suite 225, Chicago (312) 765-0419 ucpnet.org

Tourette Syndrome Association training, residential facilities, vocational training, supported employment and more individuals with developmental disabilities.

Pathways.org 150 N. Michigan Ave. Suite 2100, Chicago (800) 955-2445

pathways.org

Free educational resources on the benefit of early detection and early therapy for children’s motor, sensory and communication development. Materials (brochures, handouts, videos, etc.)

are available on website in English, Spanish and numerous other languages.

The Arc of Illinois 20901 La Grange Road Suite #209, Frankfort (815) 464-1832 thearcofli.org

Programs include: Illinois Life Span, Family Support Network, Family to Family Health Information Center, Family Transition Project, Ligas Family Advocate Program, Consumer Stipend Program and The

Provides support to families and advocate for inclusion in every facet of community life.

DOWN SYNDROME Down in the Southland

Special Recreation Associations in Illinois provide a lifetime of recreation opportunities for children and adults with disabilities. If your community is not listed, contact WSSRA at 847-455-2100 for assistance with finding an agency near you. Look for our ad in this magazine.

Champaign-Urbana Special Recreation (CUSR) 217-239-1152, www.cuspecialrecreation.com Champaign, Urbana Chicago Park District Special Recreation Unit Chicago 312-745-1298, geralyn.henaghan@chicagoparkdistrict.com Fox Valley Special Recreation Association (FVSRA) 630-907-1114, www.fvsra.org Aurora, Batavia, Geneva, Montgomery, North Aurora, Oswego, St. Charles, South Elgin, Sugar Grove Gateway Special Recreation Association (Gateway) 630-325-3857 x110, gatewayspecialrec.org, Burr Ridge, Elmhurst, Hinsdale, Oak Brook, Westchester, Willowbrook

Northeast DuPage Special Recreation Association (NEDSRA) 630-620-4500, www.nedsra.org, Addison, Bensenville, Butterfield, Glendale Heights, Itasca, Lombard, Medinah, Oak Brook Terrace, Schiller Park, Villa Park, Wood Dale

South West Special Recreation Association (SWSRA) 708-389-9423, www.swsra.com Alsip, Blue Island, Justice, Merrionette Park, Midlothian, Palos Heights, Posen, Summit, Worth

Northern Illinois Special Recreation Association (NISRA) 815-459-0737, www.nisra.org, Barrington, Cary, Crystal Lake, Dundee Township, Elgin, Hampshire, Harvard, Huntley, Lake in the Hills, Marengo, McHenry, Wauconda, Woodstock

Southwestern Illinois Special Recreation Association (SWILSRA) 618-346-7529, www.collinsvillerec.com Belleville, Collinsville, Godfrey, Granite City, Highland, O’Fallon

Northern Suburban Special Recreation Association (NSSRA) 847-509-9400, www.nssra.org, Deerfield, Glencoe, Glenview, Highland Park, Highwood, Kenilworth, Lake Bluff, Lake Forest, Northbrook, Northfield, Riverwoods, Wilmette, Winnetka

Special Recreation Association of Central Lake County (SRACLC) 847-816-4866, www.sraclc.org Grayslake, Hawthorn Woods, Lake Zurich, Libertyville, Lincolnshire, Mundelein, Vernon Hills

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

Special Recreation Services of Northern Lake County (SRSNLC) Lindenhurst, Round Lake Area, Waukegan, Zion Lindenhurst - 847-356-6011, www.lindenhurstparks.org Round Lake - 847-740-9828, www.rlapd.org Waukegan - 847-360-4760, www.waukeganparks.org Zion - 847-746-5500, www.zionparkdistrict.com

Heart of Illinois Special Recreation Association (HISRA) 309-691-1929, Chillicothe, Morton, Peoria, Washington www.peoriaparks.org/heart-of-illinois-special-recreation

Northwest Special Recreation Association (NWSRA) 847-392-2848, www.nwsra.org Arlington Heights, Bartlett, Buffalo Grove, Elk Grove, Hanover Park, Hoffman Estates, Inverness, Mt. Prospect, Palatine, Prospect Heights, River Trails, Rolling Meadows, Schaumburg, South Barrington, Streamwood, Wheeling

Illinois River Valley Special Recreation Association (IRVSRA) Creve Coeur, East Peoria, Groveland, Pekin East Peoria – 309-699-3923, www.fondulacpark.com Pekin – 309-347-7275, www.pekinparkdistrict.org

Oak Lawn Park District/Special Recreation Cooperative 708-857-2200, www.olparks.com, Bedford Park, Bridgeview, Burbank, Chicago Ridge, Crestwood, Evergreen Park, Hickory Hills, Hometown, Oak Lawn, Palos Hills, Stickney

Kishwaukee Special Recreation Association (KSRA) 815-758-6663 x122, DeKalb, Genoa, Sycamore

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

Lily Cache Special Recreation Association (LCSRA) 630-739-1124, www.bolingbrookparks.org Bolingbrook, Plainfield Lincolnway Special Recreation Association (LWSRA) 815-462-2900, www.lwsra.org, Frankfort, Manhattan, Mokena Community, New Lenox Community, Peotone, Wilmington Maine-Niles Association of Special Recreation (M-NASR) 847-966-5522, www.mnasr.org, Des Plaines, Lincolnwood, Morton Grove, Niles, Park Ridge, Skokie

South East Association for Special Parks & Recreation (SEASPAR) 630-960-7600, www.seaspar.org, Brookfield, Clarendon Hills, Darien, Downers Grove, Indian Head Park, LaGrange, LaGrange Park, Lisle, Western Springs, Westmont, Woodridge South Suburban Special Recreation Association (SSSRA) 815-806-0384, www.sssra.org, Country Club Hills, Flossmoor, Frankfort Square, Hazel Crest, Homewood, Lansing, Matteson, Oak Forest, Olympia Fields, Park Forest, Richton Park, Tinley Park

Special Recreation of Joliet and Channahon (SRJC) 815-741-7275 x169, Channahon, Joliet Special Recreation Services (SRS) 708-841-1071 x233, www.specialrecservices.org Calumet City, Dolton, Riverdale, South Holland Tri County Special Recreation Association (Tri County) 815-407-1819, www.tricountysra.org Crest Hill, Lemont, Lockport Township, Romeoville Warren Special Recreation Association (WSRA) 847-244-6619, www.warrentownship.net/wsra Grayslake, Gurnee, Warren Township, Wildwood Western DuPage Special Recreation Association (WDSRA) 630-681-0962, www.wdsra.com Bloomingdale, Carol Stream, Glen Ellyn, Naperville, Roselle, Warrenville, West Chicago, Wheaton, Winfield West Suburban Special Recreation Association (WSSRA) 847-455-2100, www.wssra.net Berwyn, Cicero, Elmwood Park, Forest Park, Franklin Park, Harwood Heights, Norridge, Oak Park, River Forest

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

coveschool.org

A private K-12 day school that serves students with learning disabilities from more than 50 school districts around Chicagoland.

Provides educational support and programs to help children increase their future skills.

GiGi’s Playhouse

The Lily Garden Child Care Center

2350 W. Higgins Road Hoffman Estates (847) 885-PLAY (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 P.O. Box 206, Wilmette (630) 325-9112 nads.org

Offers information, a parent support program for newly diagnosed children, mentoring program, work experience program and other individualized services. Also has a speaker presentation program to become trained to be a public speaker to talk to doctors and schools about Down syndrome.

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 generally held on the third Tuesday of the month, from September through May, excluding December. Meetings are held at the Fox Links Golf Run Club House in Elk Grove Village.

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830 S. Addison St. Villa Park (630) 261-6283 lilygarden.org

Provides child care services for children six weeks through 6 years. It fosters independence, and respect for children of all abilities.

Therapeutic School & Center for Autism Research

Special Olympics Illinois Young Athletes

EDUCATION Beacon Therapeutic School 10650 S. Longwood Drive Chicago (773) 881-1005 beacon-therapeutic.org

Private special education facility serving kids 3-21.

Brain Balance Achievement Center 1101 S. Milwaukee Ave. Suite 105, Vernon Hills (847) 821-1328 brainbalancecenters.com

An individualized program that uses a comprehensive, multi-faceted approach designed to address each child’s specific deficiencies while combining proper nutritional guidance.

Cognitive Solutions Learning Center Inc 2409 N. Clybourn Ave. Chicago (773) 755-1775 helpforld.com

Specializes in learning disabilities and ADHD. Offers educational and psychological testing, one on one tutoring, neurofeedback, psychotherapy and executive

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functions training.

Easter Seals Autism Therapeutic SchoolTinley Park 17300 Ozark Ave., Tinley Park (708) 802-9050 eastersealschicago.org

Approved by the Illinois State Board of Education for kids 3-22. Easter Seals has schools located in Tinley Park, Chicago and Rockford.

Easter Seals Gilchrist-Marchman Child Development Center 1001 W. Roosevelt Road Chicago (312) 492-7402 chicago.easterseals.com

Full-day, full-year inclusive early childhood and education services for children six weeks to 5 years. State-certified, credentialed and bilingual teaching staff.

Elim Christian Services 13020 S. Central Ave. Palos Heights (708) 389-0555 elimcs.org

Ministry in the Chicago southwest suburbs serv-

ing individuals with disabilities from 3 years old through their senior years.

Keshet 617 Landwehr Road Northbrook (847) 205-1234 keshet.org

Provides education, recreation and vocational programs for children and adults with special needs. Programs are run within the framework of Jewish values and traditions.

LifeStyles Academy 10300 W. 131st St. Palos Park (708) 480-2085 lifestylesacademy.org

Educational and vocational center for adults and young adults with various disabilities who have graduated from high school transition programs.

Safe Haven School 937 Happ Road, Northfield (847) 714-2594 safehavenschool.org

Therapeutic school that accepts students 5-18 with internalized emotional disabilities. These include depression, bipo-

lar disorder, severe anxiety disorders including social phobia, separation anxiety, selective mutism, post-traumatic stress and obsessive-compulsive disorders, ADHD, LD, NVLD and multiple diagnoses. Also a location at 906 Muir Ave., Lake Bluff, (847) 604-3903.

1939 W. 13th St. (13th Street and Damen Avenue), Chicago (312) 432-1751 (school) (312) 491-4110 (central office) eastersealschicago.org

Therapeutic day school for students ages 5 through 21, with autism and related disorders.

Autism Therapeutic Schools offer year-round instruction for students ages 3-21. After School Program offers structured programming from 3-6 p.m. for ages 3-21 with autism or other developmental disability (participants do not need to attend an ESMC school). Adult Vocational Programs for individuals 22+. Camp FRIENDship focuses on teaching social, play and leisure skills to children with autism 5-12. The Autism Program Chicago Service Center provides information and referral services.

Stock School

Wolcott School

7507 W. Birchwood Ave. Chicago (773) 534-1215 stock.cps.k12.il.us

524 N. Wolcott, Chicago (312) 610-4900

Soaring Eagle Academy 8320 S. Madison St. Burr Ridge (630) 323-2900 soaringeagleacademy.org

Preschool that offers a play-based curriculum. The program consists of 2 ½ hours a day for five days a week, with a 1:5 adult to student ratio.

The Cove School 350 Lee Road, Northbrook (847) 562-2100

Independent college prep high school offering a program for students with learning differences, including dyslexia and executive functioning challenges.

GENERAL Access Living 115 W. Chicago Ave., Chicago

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School puts students on level playing field

W

olcott High School’s recipe for success seems to be working. The non-profit independent college preparatory high school for students with learning differences and disabilities continues to grow since its opening last fall. What makes this high school work is that its curriculum revolves around the development of individual strengths and specific learning strategies, allowing students the opportunity to be on the same learning level as peers without disabilities. The high school emphasizes service learning, green living,

technology proficiency, personal portfolio and cultural proficiency and includes a senior capstone project. “One of our top priorities is preparing students for success in college, said Rachel Spiro, Wolcott’s director of admissions, in a news release.

The Ultimate Guide to Family Fun!

Kristina Lazzara

WOLCOTT HIGH SCHOOL For more information on enrollment, wolcottschool.org.

Second City opens doors to those on the spectrum

Kristina Lazzara

SECOND CITY TRAINING CENTER ■

For information, visit secondcity.com/training/chicago

The course is $325.

FREE

SUMMER 2014

GOING PLACES

Teens and adults with autism have a fun new way to explore relationships and social cues thanks to The Second City’s Improv for ASD’s 12-week mentoring program. Using improv games and exercises lead by Second City Training Center experts, the program allows individuals to break out of their shells. They also learn teamwork, confidence and listening. Child psychologist Dr. Robert E. Daniels, of the Chicago Children’s Clinic, routinely refers his patients to Second City. “The improv workshops and camps perfectly complement what we do in therapy, providing an outlet for creativity and an opportunity to form strong friendships,” he says. According to Daniels, Second City’s take on autism therapy is innovative. Research has shown that children learn at their best while having fun with friends. What makes the classes different is a slower pace, more facilitators and an increased effort to make them more comfortable.

GP_Summer_Cover2014.indd 9

27 COOL

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4/30/14 3:55 PM

For more information, call (708) 386 5555 or visit ChicagoParent.com ChicagoParent.com |

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Summer edition now available!

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GENERAL (800) 613-8549 or (312) 640-2100 accessliving.org

Blue Island (708) 389-6578 blue-cap.org

Offers peer-oriented independent living services; public education; individualized and systemic advocacy; and enforcement of civil rights on behalf of people with disabilities. All services are provided at no charge.

School for children with intellectual and developmental disabilities, including autism, who are 3-21. On-site day care for children 2-5 is also available.

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.

Blue Cap 2155 Broadway St.

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

Provides skill development for greater independence, community integration, recreation and social programs for youth, teens, adults and seniors with developmental disabilities.

Clearbrook 1835 W. Central Road Arlington Heights

(847) 870-7711 clearbrook.org

Provides experiences and opportunities for people with autism, Down syndrome, cerebral palsy and other developmental disabilities.

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

Nonprofit serving people of all ages with intellectual/developmental disabilities and their families. Respite, CILA group homes and independent living arrangements, adult and parent support services, customized supported employment, transition planning and classes, cooking, art, health and

As featured on ABC 7, NBC 5, WGN-TV and WCIU-TV The Karate Can-Do! Foundation works hand-in-hand with North Shore Dojo, the area’s premier karate school, to provide personalized training to improve the lives of children who learn differently. Sensei Jeff Kohn is the recipient of the 2011 United States Olympic Committee’s Paralympic Coach of the Year Award 847.729.0001 • www.NorthShoreDojo.net 2081 John’s Court, Glenview Karate CAN-Do! is a registered 501(c)(3)

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

Keshet: A Rainbow of Hope for Individuals with Special Needs 617 Landwehr Road 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. Multiple locations.

Lexi Kazian Foundation-Helping From Heaven 105 Townline Road, Suite 132 Vernon Hills (847) 624-LEXI (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. Also accepts gently used therapy equipment to share with others.

Marklund 1 S. 450 Wyatt Drive, Geneva (630) 593-5500

marklund.org

Offers a variety of programs and services designed to provide infants, children and adults with developmental disabilities with medical and dental care; residential facilities in Bloomingdale and Geneva; rehabilitative therapies; education and day services; communitybased respite and earlyintervention programs.

MAGIC Foundation 6645 W. North Ave., Oak Park (800) 362-4423 magicfoundation.org

Support and education for children and adults with growth disorders.

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

LifeStyles Academy is designed as an educational & vocational center for adults and young adults with various disabilities who have graduated from high school transition programs. Members of LifeStyles Academy will achieve the independence and empowerment that leads to a fulfilling and productive lifestyle. ◆ Culinary Skills/Computer & Vocational Training ◆ Inspiring Creativity in the Arts ◆ Imparting Awareness and the Responsibility of Citizenship to all of Our Participants ◆ Intellectual, Social and Physical Development Please visit our website to complete our enrollment application: www.lifestylesacademy.org 10300 W 131st St (west wing of Peace Memorial Church) Palos Park, IL 60464 For more information, please email info@lifestylesacademy.org or call us at: 708-480-2085.

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GENERAL “coach” with a young athlete. A second facility is located at FleetwoodJourdain Center, 1655 Foster St., Evanston.

neumannfamilyservices.org

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

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

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

Right Fit’s Raise the Bar fitness programs and camps are offered year round for those with autism spectrum disorders and those physically and mentally challenged.

Community service agency that provides services to individuals with developmental disabilities.

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

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

Pioneer Center Administrative Office 4001 Dayton St., McHenry (815) 344-1230 pioneercenter.org

Adult and youth counseling and intellectual and developmental disability services. Its focus is on assisting individuals in becoming as independent as possible.

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

Nearly 2,500 children and adults with developmental disabilities receive vocational, residential, educational, respite, therapeutic and recreational services and supports at 35 locations in DuPage County.

Rink Side Special Sk8er class

Therapy Yoga Gymnastics Rocks Shore Community Services Inc.

Rehabilitation Services program (stars-therapy.org).

Regenstein Center 4232 Dempster St., Skokie (847) 982-2030 shoreservices.org

Suburban Access Inc.

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 Program, Vocational, In-Home Respite and Adult Day Services.

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

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

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.

LEGAL DePaul University Special Education Advocacy Clinic 1 East Jackson Boulevard, Suite 100, Chicago (312) 362-8294 law.depaul.edu/clinical_programs/clinical_special_ed.asp

Comprehensive advocacy program designed to protect the educational rights of children with disabilities while introducing law students to special education law. Primarily works within Cook County and at public schools only.

RECREATION 1st Position Dance and Movement Held at Dance Center Evanston

1934 Dempster St., Evanston (847) 563-8719 1stposition.us

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

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 with children with special needs a chance to play in a quiet, more manageable setting.

Dolphin Swim Club Crystal Lake, Skokie, Schaumburg - (847) 854-1300 Loves Park, Rockford - (815) 282-3488 dolphinswimclub.com

Teachers are experienced working with students who have special needs including autism, Down syndrome, cerebral palsy and sensory integration disorder.

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

Offering occupational and speech therapy in swimming pool facilities.

Haley’s Playground 1 N. Lincolnway North Aurora (630) 777-5045 haleysplayground.com

Provides a safe, healthy, sensory motor environment for individuals with physical, cognitive and social disabilities. Available for ages 2-30. The kids, teens, and young adults are mentored by their peers of typical development. Offers Thursday Teen Night, Saturday Morning Classes and Sunday Open Gym.

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

Free one-to-one recreational opportunities for people 5-21 with developmental and physical disabilities. KEEN pairs a trained volunteer ChicagoParent.com |

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Rink Side Ice Arena and Family Entertainment Center Gurnee Mills Mall, Gurnee (847) 856-1064 ext. 302 rink-side.com

Skating class for ages 3 to adult who have physical and mental challenges. Classes are held Saturday mornings during the school year.

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 geared toward children with special needs.

Second City Improv for ASD Chicago secondcity.com/training/ chicago

Offers an Improv for ASD and anxiety curriculum for teens and adults with Autism Spectrum Disorders a unique 12-week mentoring and development experience.

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

Once a month, Sky High

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RECREATION turns off the music and dials down the distractions for special jumpers. Jumps are held from 3-6 p.m. the first Tuesday of each month. Cost is $5 for three hours for the special jumper and siblighs, with a parent or therapist free.

ing opportunities and resources. For more information, email tara@ sibsnetwork.org.

The Apraxia Connection 401 North Catherine Ave. La Grange Park theapraxiaconnection.org

Established by three Chicagoland mothers of children with varied degrees of apraxia of speech, global apraxia and associated disorders. The volunteers strive to connect neighborhood resources and information on apraxia and associated disorders with the individuals, families, therapists, educators and other professionals who need them.

Special Gifts Theatre P.O. Box 2231, Northbrook (847) 564-7704 specialgiftstheatre.org

An educational and therapy based drama program for individuals who have special needs.

Therapy Yoga Gymnastics Rocks 2630 W. Bradley Place Chicago (773) 991-7316 therapygymnastics.com

Provides pediatric occupational and physical therapy in fun gymnastic and yoga centers. Additional locations in Northbrook at 1845 Raymond Drive and in Niles at 7779 N. Caldwell Ave.

YOGA for Special Parents and Caregivers Multiple locations yogamaria@comcast.net (269) 465-6711 www.facebook.com/ YOGAforSpecialParents

An accessible, empowering approach to yoga for parents and caregivers of special needs children. Promotes body awareness and stress management. No prior experience necessary.

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

All-inclusive community resource center, welcoming all children and their families regardless of

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age or disability. Offers monthly workshops, sibling workshops, a resource library, parties, book club, play groups and more. Connects families.

Center for Independent Futures 1015 Davis St., Evanston (847) 328-2044 independentfutures.com

Nonprofit organization that helps individuals with disabilities and their families access the skills and opportunities to realize full lives.

Family Resource Center on Disabilities 11 E. Adams St., Suite 1002 Chicago (312) 939-3513 (312) 939-3519 TTD frcd.org

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

Family Support Network of Illinois 651 E. 159th Place

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Tic Together Community Group

Brain Injury Association South Holland (708) 331-7370 familysupportnetwork.org

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

Illinois Parents of Adults with Developmental Disabilities (IPADD) Unite 3104 Treesdale Court Naperville (630) 922-3232 health.groups.yahoo.com/ group/IPADDUnite

Join 1,200+ Illinois families working toward better futures for their loved ones. IPADD 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

Lekotek offers therapeutic play-based sessions and play groups for children with disabilities (birth-8) and their families. Families who are members of the Lekotek program can borrow toys from the toy lending library. Services are provided in English and Spanish.

Protected Tomorrows Charities 103 Schelter Road Lincolnshire (847) 522-8086 protectedtomorrowscharities.org

Not-for-profit dedicated to helping families with special needs optimize the lifelong care of their loved ones with resources, research and education.

South Chicago Parents & Friends 10241 S. Commercial Ave.

Chicago (773) 734-2222 scpfrc.org

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

Special Parents for Special Kids 212 Barney Drive (inside Easter Seals), Joliet specialparentsforspecialkids. com

A parent-led group open to all parents, regardless of their child’s diagnosis. Monthly meetings to share experiences and support. Guest speakers. Childcare provided on-site.

Supporting Illinois Brothers and Sisters

River Heights Business Center 5375 Highway 34, Suite 4 Oswego

Support group for people whose lives have been touched by Tourette Syndrome. Meets the third Wednesday of every month at 6:30 p.m. and is open to all ages and educators as well. For information, email tic2gether@gmail.com.

THERAPY Adult and Child Therapy Services 708 Washington St. Woodstock (815) 338-1707 adultchildtherapy.org

Offers physical, occupational and speech therapy, as well as nursing services.

All Bright Therapies

3800 N. Lake Shore Drive #3E, Chicago (708) 989-3619 sibsnetwork.org

1957 W. Dickens, Chicago (773) 698-6535 allbrighttherapies.com

Nonprofit organization providing support to siblings of people with disabilities in Illinois by connecting them with information, network-

Speech/language, occupational and feeding therapy for children. The staff has experience and specialized training in a variety of delays and disorders.

| ChicagoParent.com

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THERAPY

Institute for Therapy Through the Arts Aspire Children’s Services 1815 S. Wolf Road, Hillside (708) 236-0979 aspireofillinois.org

Comprehensive services for children who have developmental delays and disabilities and their families include: developmental, occupational, physical, sensory integration and speech therapies; evaluations; orthopedic and vision clinics; social skills groups for children with social or sensory challenges or who are on the autism spectrum; Alert Groups for children who need help learning to recognize and regulate their arousal levels; assistive technology and augmentative communication evaluations and support; parent groups; Sibshops; and family programs throughout the year.

Assential Therapies 241 Golf Mill Center Suite 201, Niles (847) 699-9757 atmfc.com

Feeding clinic and multidisciplinary therapy services.

BDI Playhouse 11411 W. 183rd St., Orland Park 1864 High Grove Lane, Suite 104, Naperville (708) 478-1820 bdiplayhouse.com

Provides a wide range of therapy services, intensive programming for autism, play groups and parent training.

By Your Side 16W361 S. Frontage Road, Suite 131, Burr Ridge (630) 590-5571 1920 Thoreau Drive, Suite 180, Schaumburg (847) 496-5513 byyoursideac.com

Speech and language therapy centers dedicated to children and young adults with autism. The centers teach communication strategies and social skills for kids to cope within the demands of everyday life. Offers four programming options to address the varying needs of the autism spectrum.

Center for Independence through Conductive Education

100 W. Plainfield Road Countryside (708) 588-0833 center-for-independence.org

Provides intensive motor training programs based on the principles of conductive education for children with physical disabilities. The motivating, peer-supported program focuses on functional activities to improve independence and serves children with cerebral palsy 2-18. Locations also in Lake Zurich and 2434 S. Kildare, Chicago.

City Kids 5669 N. Northwest Highway Chicago (773) 467-5669 citykidsinc.com

Physical, occupational, speech and language, and therapy, plus educational preschool playgroups and a variety of classes and groups for all ages.

Clinical Connections 2225 Lakeside Drive Bannockburn (847) 234-0688 clinicalconnections.info

In-home floortime services,

speech and occupational therapy, sports training and music therapy. Teen center to learn and practice leisure and social skills. Jamberry Preschool is integrated preschool for kids with mild to moderate articulation, language and social delays.

Community Therapy Services 40W310 LaFox Road Suite A1/B1, St. Charles (630) 444-0077 ctspediatrics.com

Provides speech, occupational, physical and augmentative communication therapy. Facilitates support groups for parents and caregivers.

Connected Kids Pediatric Therapy 15 Commerce Drive, Suite 111 Grayslake (847) 548-3458 conkids.com

Provides cutting-edge therapy in a gymnastics setting. Its approach combines social interaction, sensory integration, strengthening, coordination, sequencing and following directions.

Courage To Connect Therapeutic Center 2400 Ravine Way, Suite 600 Glenview (847) 730-3042 couragetoconnecttherapy.com

Full range of therapy and support services for Asperger’s Syndrome, anxiety, depression, ADHD, art and play therapy, and behavior management. Monthly social groups for Asperger’s and ADHD Social Skills. The teen girls group offers therapeutic support for girls 14 and over.

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

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Easter Seals Joliet Region Inc. 212 Barney Drive, Joliet (815) 725-2194 joliet.easterseals.com

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, ChicagoParent.com |

Nutrition & Feeding Clinic, Positioning and Mobility Clinic, Casting Clinic, Splinting Clinic, Orthopedic Clinic, Vision Clinic and Dental Clinic. Provides support groups and sibling support groups. Other locations at 1323 Bond St., Suite 119, Naperville, (630) 357-9699, and 799 S. McLean Blvd., Suite 103, Elgin, (847) 7423264. The Lily Garden Child Care Development Center in Villa Park is an inclusive childcare center.

Provides certified, accredited services to children and adults with disabilities and special needs; physical, occupational, speech and developmental therapy, inclusive child care for six weeks to 4 years, early intervention, school therapy, outpatient rehabilitation, residential group

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THERAPY homes and foster care services. Offers a wide variety of programming for families with children with autism spectrum disorders through the Family Center for Autism Resources. Jump Start Early Childhood Programming is provided for at-risk families with children birth to 3.

Easter Seals Society of Metropolitan Chicago 1939 W. 13th St., Suite 300 Chicago (312) 491-4110 eastersealschicago.org

Easter Seals provides comprehensive autism services, early intervention, inclusive early childhood education, family support and services, and youth and adult services.

El Valor 1850 W. 21st St. Chicago (312) 666-4511 elvalor.org

Bilingual, bicultural resource centers; respite services for families; inclusive head start.

Eyas Landing 1436 W. Randolph St., Suite 204, Chicago (312) 733-0883 eyaslanding.com

Offers occupational therapy, speech therapy, group therapy, therapeutic preschool program and early intervention services. Specializes in sensory integration, autism, DIR/Floortime, augmentative communication and stuttering.

Flying High Sports & Rec Center: Superstars Pediatric Therapy Program 5400 East Ave., Countryside (708) 352-3099 flyinghighgym.com

Offer Superstars, a pediatric occupational and physical therapy program.

Focus on Kids Too

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Hope’s Playground Pediatric Therapy 425 Huel Road, Suite 14A Northbrook (847) 412-9772 focusonkidstoo.com

Specializes in the treatment of children with sensory processing disorders.

Hope’s Playground Pediatric Therapy 311 W. Depot St., Suite N Antioch (847) 838-8085 hopesplaygroundinc.com

Offers pediatric occupational, physical and speech-language therapy. Works with children birth-18.

Institute for Therapy through the Arts 1702 Sherman Evanston (847) 425-9708 itachicago.org

Provides individual, group and family therapy services for all ages who have psychological, physical and developmental challenges. Serves clients at sites throughout Chicagoland as well as an in-house clinic in Evanston, Chicago, Downers Grove and Lake Forest.

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Kick Start Pediatric Network 1845 Oak St., Suite 15 Northfield (847) 386-6560 kickstartptn.com

Pediatric clinic offering occupational therapy, speech/language therapy, and a variety of groups. Provides early intervention services through the state and also offers private services for children 0-3 in a clinic setting.

Kids Can Do Inc. Children’s Therapy Center 19100 S. Crescent Drive, Suite 101 Mokena (708) 478-5400 kidscando.org

Provides speech, occupational and physical therapy.

Kids in Motion, Inc. 4721 W. Midlothian Turnpike, Suite 25 Crestwood (708) 371-7007 kidsinmotion.org

Pediatric physical, occupational and speech therapists. Dedicated

team also provides therapy intensives, social groups, serial casting, partial weightbearing treadmill training (PWBTT), post-operative therapy, and social work consultations.

therapeutic listening intervention, feeding therapy, neuro-developmental treatment, kinesiotaping, oral-motor techniques, and specialized techniques.

mental checklists and parenting blogs on its website.

Mosaic Therapy

Learning through Play Center for Child Development

604 W. Lavergne, Wilmette (312) 799-9351 mosaictherapy.org

Offers home-based and clinic-based developmental therapy, speech therapy, play groups and social work/counseling services.

633 W. Addison St. Chicago (312) 458-9865 pediatricresources.org

Offers speech therapy, ABA/behavior therapy, occupational therapy and sensorimotor modalities.

Milestones-For Kids’ Success 2901 Finley Road, Suite 101 Downers Grove (630) 792-1800 milestones4kids.com

Provides pediatric occupational, physical, speech-language therapy, social work, biofeedback/neurofeedback and holistic care. Expertise in sensory integration therapy, sound-based/

Offers families counseling, educational therapy and occupational therapy.

North Shore Pediatric Therapy Glenview, Chicago and Highland Park (877) 486-4140 NSPT4kids.com

Three pediatric multidisciplinary clinics including neuropsychology, diagnostics and therapy. Offers occupational, speech and physical therapy, applied behavior analysis, behavior911, social work, nutrition, academic tutoring, reading and social groups. Also provides free resources, develop-

PlayWorks Therapy 2155 W. Belmont, Chicago (847) 977-3399 playworkschicago.com

Social Endeavors 1416 Lake St., Suite 1 Evanston (773) 339-7619 socialendeavors.net

Social skills groups for children, age 2-10 years old, focusing on the development of age-appropriate social and communication skills. Emphasizes handson learning for both parents and children, as well as teachers.

Special Therapy Care 11750 S. Western Ave. Chicago (773) 779-5800 specialtherapycare.com

Offers occupational, speech, physical, or

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THERAPY developmental therapy as well as sensory integration treatment. A second location is at 4507 W. 95th St., Oak Lawn, (708) 422-5500.

Speech, Language, and Learning Clinic at Northwestern University Frances Searle Building 2240 Campus Drive, 1-347 Evanston (847) 491-5012 sllclinic.northwestern.edu

A university-based clinic specializing in evaluation and treatment services for infants, children, adolescents and adults with speech-language, learning or swallowing needs.

Tivers Clinical Specialties 26575 W. Commerce Drive Unit 506, Volo (224) 993-9450 erictivers.com

Therapy, coaching and consulting. Specializing in ADHD and Asperger Syndrome/HF Autism.

UIC Child & Family Development Center 1640 W. Roosevelt Road Room 336, MC628 Chicago (312) 413-1567 uic-cfdc.org

The child’s caregiver is an active participant in therapy sessions where they learn to promote their child’s growth and development. Licensed and credentialed clinical staff provide evaluation and therapy services through private insurance and or Illinois’ Early Intervention System. Pediatric DT, OT, PT, ST and SW services with bilingual Spanish/English providers available.

Vital Rehabilitation Clinics and Services 5820 W. Irving Park Road Chicago (773) 685-8482 vitalrehabilitation.com

Developmental, occupational, physical and speech therapies. Locations in Chicago, Park Ridge, Merrionette Park and Schaumburg.

VOCATIONAL Avenues to Independence 515 Busse Highway Park Ridge (847) 292-0870 avenuestoindependence.org

Helps people with special needs and developmental needs through residential housing, job placement and workshops.

Donka Inc. 400 N. County Farm Road Wheaton (630) 665-8169

donkainc.org

Provides computer training that teaches students who demonstrate special accessibility requirements and low-income levels how to use computers to read, write, continue an education or advanced skills needed for the workplace.

HarrysButtons.com Easter Seals Metropolitan Chicago 17300 Ozark Ave. Tinley Park (708) 802-9050 harrysbuttons.com

Adolescents and young adults with autism are employed by HarrysButtons.com, a micro-enterprise that manufactures wholesale, handmade custom buttons, magnets and key chains. Additional location at 1939 W. 13th St., Chicago.

Play and Say Therapy Parents Alliance Employment Project

Ticket to Work Program

2525 Cabot Drive, Suite 302 Lisle (630) 955-2075 parents-alliance.org

(866) 968-7842 - Beneficiary Call Center and Hotline (866) 949-3687 - Employment Network and Service Provider Hotline yourtickettowork.com

Offers free individualized employment services.

SouthStar Services 1005 W. End Ave. Chicago Heights (708) 755-8030 southstarservices.org

Employment program for people with disabilities.

We Grow Dreams, Inc.

Providing opportunities for people with developmental disabilities. Additional locations in Olympia Fields and Schererville, Ind.

1055 W. Washington St. West Chicago (630) 293-0100 wegrowdreams.org

Training and employment for people with disabilities through the greenhouse and garden center.

Small Class Sizes with Professional Teachers Adapted Aquatics Instruction for Children with Special Needs

chicagobluedolphins.com ChicagoParent.com |

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Specıal Parent XXX

CHICAGO

SERVICE DIRECTORY

PEDIATRIC DENTISTRY We take the fear out of dentistry for your child. • Shots and drilling are no longer necessary • Computer x-rays reduce your child’s exposure to radiation • We use smaller chairs and instruments • We welcome patients with special needs

SPEECH THERAPY

At Southwest Dental we take special care of

special needs.

• Pleasant, comfortable surroundings

“When Experience Matters”

You Want [to Communicate More Effectively.] Exceptional Care at Affordable Rates.

Diplomate, American Board of Pediatric Dentistry

16345 S. Harlem • Tinley Park

708-633-8700 • www.kidsdds.net

THERAPEUTIC SERVICES

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.

Charlie’s Gift

(708) 403-3355

Center for Autism, Sensory Processing and Related Disorders www.thecommunityhouse.org 630-810-1200 1048 West Ogden Avenue Suite # 200 Downers Grove, Il 60515

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

SIBLING SUPPORT

PEDIATRIC THERAPY

Midwestern University

SpeechLanguage Institute

Our long established and well-respected center in Chicago’s southwest suburbs specializes in the treatment of: Autism, Coordination Disorder, Hypotonia, Sensory Processing Disorder, Torticollis, Toe Walking, and other neuro-motor diagnoses. Celebrating our 25th year of service, we employ only highly experienced therapists who are advanced in their fields. We offer caring and progressive PT, OT and ST to help your child achieve rapid progress in an atmosphere of love and respect from all of us. 4721 W. Midlothian Tpk., Suite 25 Crestwood, IL 60445 (708) 371-7007

AUTISM SUPPORT

ONE IN 50

children is diagnosed with Autism.

Your Family’s Home for Healthcare 3450 Lacey Road Downers Grove, IL 60515 630/743-4500 www.mwuclinics.com

TOGETHER WE PROVIDE HOPE • POSSIBILITIES • OPTIONS

PHONE: 630.691.1270

AUTISM 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:

Saturdays: Please call for dates and times

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

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A Comprehensive Diagnostic, Therapeutic & Treatment Solution We are a team of highly trained specialists dedicated to enhancing the quality of life for individuals and families through the practices of Applied Behavior Analysis. We offer a variety of behavioral and educational services overseen by Board Certified Behavior Analysts in our center, home, school and community.

www.AutismSpectrumAlliance.com 3501 Algonquin Road, Suite 210, Rolling Meadows IL 60008

(847) 925-5260

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XXX

ChiCago Specıal Parent Advertiser Index Ad Name .....................................Page Number(s)

The Cove School ..............................................................24

Learning Through Play ...................................................26

Acacia Academy..............................................................10

Dempster Family Foundation .........................Back Cover

LifeStyles Academy ................................................. 28, 40

Advocate Children’s Hospital ........................................ 46

The Discovery Clinic ......................................................... 9

Midwestern University .............................................14, 46

Advocate Lutheran .........................................................29

Dolphin Swim ................................................................. 20

Mobility Works ................................................................10

Autism Family Center ..................................................... 19

DuPage Children’s Museum .......................................... 20

Pauly’s Pals .......................................................................3

Autism Home Support .....................................................7

Earn Income at Home .................................................... 19

Autism Society of Illinois .............................................. 46

Easter Seals ..................................................................... 14

Autism Spectrum Alliance ............................................ 46

Elmhurst College ...............................................................5

The Bancroft School........................................................28

Extended Home Living ...................................................29

Blue Dolphin....................................................................45

Fredric S. Tatel, DDS ....................................................... 46

By Your Side ...................................................................... 1

Here We Come ................................................................29

Camelot Therapeutic Day Schools ................................. 19

Karate Can Do................................................................. 40

Southwest Dental Group ........................................... 9, 46

Charlie’s Gift ..............................................................27, 46

Keshet ..............................................................................22

SRANI .........................................................Inside Front, 37

Chicago Children’s Museum ........................................... 16

Kids in Motion ................................................................ 46

Trumpet Behavioral Health............................................23

The Children's Museum in Oak Lawn ............................ 19

Lambs Farm.....................................................................27

Ups for Downs.................................................................27

City Elementary .............................................................. 16

Learning Disabilities Association...................................10

Yoga for Special Parents ..................................................8

Pump It Up ..................................................................... 20 Rink Side..........................................................................22 Seaspar ............................................................................. 9 Sertoma ........................................................................... 14 Smart Love Family Services .............................................7

ChicagoParent.com |

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INSPIRATIONS

I

f you ever run into Miles Evans, chances are he’ll have his camera with him. That’s pretty much the way it’s been since Miles, 14, first picked up a camera seven years ago. “It just stuck,” says his mom, Julie. “He’s so enthusiastic about it and proud about it, I think we want to keep it going.” Miles’ dad, Dave, says that his son has gone through a number of photography “phases” over the years, including store signs, feet, and—like any teenager—selfies. But Miles’ ability to see beauty in even mundane things, like a box of watermelons at Trader Joe’s, is where Miles really excels. He recently competed for the sixth time in the Illinois PTA Reflections Arts Program and received an Award of Excellence at the state level. The family is exploring opportunities for displaying Miles’ work. They’ve also begun creating photo cards to be sold locally. “We try not to direct him a lot with what to do,” Julie says. “Our job is to encourage his hobby and promote his work through avenues that we find.” She and Dave hope that Miles’ enthusiasm will give him a platform for interacting with others and raise awareness of

Sharpening his focus

PHOTO BY ANNE EVANS

his abilities as a young man with Down syndrome. And if my welcome is any indication—Miles had me flipping through photos within moments—his sociability will certainly be an asset. His enjoyment of people plays out in his many extracurricular activities. He competes in Special Olympics, ran track and was on the student council at Hadley Junior High, participates in golf and buddy baseball at WDSRA, goes to Keshet’s Camp Chi, and is working toward being confirmed at his synagogue. He also volunteers, setting up and serving food to the homeless at PADS. “He has this vision for himself,” Julie says. “He’ll have a meaningful life without us every

day in his life.” She says that mindset has been their focus ever since he was born. “It’s really important that you just get your attitude set,” she says. “It might be a different path, but it’s going to be an interesting and fun path.” Her words are especially fitting when you look at Miles’ latest entry for the PTA Reflections competition. It was taken at Morton Arboretum and depicts two figures walking down an unfamiliar, yet lush, path. Their adventure—and his— lies ahead. And chances are, there will be lots of photos along the way.

Elizabeth Diffin

Fast facts Miles Evans, 14 Hometown: Glen Ellyn Family: Parents Julie and Dave; brother Nate, 22

Mom’s thoughts On support: It doesn’t have to be ‘go once a month to a support group.’ We’re not really doing that. But we have an informal network created because of our involvement in organi zations and knowing people in the community. We’re in a position to help those younger and ask people older than us for help. On school: You can be the thorn, or you can pave the way more smoothly. We’re of the pave the way more smoothly variety.

Miles takes his camera everywhere, including Camp Chi and Morton Arboretum. 48

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On advocacy: You might have to have your vision a little bit earlier for their adult life and take deliber ate steps along the way to help them achieve that. We’ve always tried to think about the future while hav ing fun in the present.

| ChicagoParent.com

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Our family of family magazines

JUNE 2014 | FREE

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Did you know… Former Chicago Cub’s Pitcher, and World Series Champ, Ryan Dempster has a daughter diagnosed with 22q11.2 Deletion Syndrome? Do you have a friend or family member whose child who is always sick, has multple serious health issues or is failing to meet developmental mile markers? What you need to know about 22q11.2 Deletion Syndrome • Present in 1 out of every 2,000 live births • Present in 1 in 68 children with congenital heart disease • Present in 5 to 8 percent of children born with cleft palate

Since 2009 The Dempster Family Foundation (DFF) has granted over $500,000 in funding to 22q/VCFS organizations, clinics and programs world wide. The DFF has also maintained an active campaign and literally driven over 50,000 miles of awareness for 22q through the 22Q Mystery Tour. DFF has nearly 30,000 fans on social media and reaches nearly all of them daily with 22q information.

22q11.2 Deletion Syndrome… Don’t miss the signs! Though not always present, the key characteristics of this syndrome include combinations and varying degrees of: • heart defects • palate differences • feeding and gastrointestinal difficulties • immune system deficits • growth delay • kidney problems • hearing loss • low calcium and other endocrine issues • cognitive, developmental and speech delays • behavioral, emotional, and psychiatric differences (ADHD, autism, anxiety, etc.)

FOR MORE INFO OR TO DONATE AND JOIN THE FIGHT AGAINST 22q VISIT DempsterFamilyFoundation.org /TheDempsterFamilyFoundation @RyanDempsterFDN Info@DempsterFoundation.org CSP0714_CV4.indd 1

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