Celebrating the lives of children with developmental disabilities Spring 2013 Heart of HopeContents You can imagine how often The Hope Institute celebrates. EveryAngels of Hope.............................. 2 day Hope children face odds to do what most people take forCould You Be an Angel? granted – dress on their own, speak words, hold a spoon, adjustLearning........................................ 3 to changes. Every day they succeed.Zachary Discovers LanguageLiving ............................................ 4 Hope staff have more than enough hugs, smiles and high fives toA New Life Begins for Rohan celebrate successes. When Rohan decided to set aside the shirt he hadTaking Care ................................... 5 worn daily for one year, word spread across campus within minutes.Elizabeth Beats All Odds Staff in every corner of Hope knew this was monumental to hisDiscovering Hope.......................... 6 development.Sensory Gym Helps Mark LearnHope’s Children Depend on You .... 7 Celebrations mark successes. But they also mark the difficult stepsBecome an Angel of Hope children take toward those successes. Struggles, even failures, areGiving the Gift of Hope ................. 7 worth celebrating. They signify effort … and hope.Leave a Legacy of Hope Jamie works at Hope’s Noll Café. One day she felt frustrated and left inGifts at Work ................................. 8 the middle of her shift. If she were working anywhere else but Hope,Trustee Reaches Donors Through Food she would have risked losing her job. “When Hope children fail, and they will at times, we want it to happen under our watch,” says Skylar Tierney, Hope’s Vocational Services director. “We helped Jamie learn appropriate work behavior and a better way to address her strong emotions.” Hope offers children like Rohan and Jamie a safe testing ground to take risks – to try wearing a new shirt or holding a job. Hope children have space and as much time as they need to reach for success and “stumble” with dignity. Sometimes the most profound lessons come from struggling. Hope children just need extra support and protection while they learn and keep trying. Pat Sajak, spokesperson for Hope’s Dream House Raffle, recently visited The Hope Institute Learning Academy. He wanted to see the place where children with and without disabilities share classrooms; where all children learn, sometimes “stumble,” try again and succeed together. “Behind every child is a team of supporters, teachers and other professionals, who provide whatever that child needs to be successful,” Sajak says. “It was a special thing to see.“It was a great day,” says Pat Sajak ofhis visit to The Hope Institute Learning “Hope is a terrific place for children.”Academy, where Phoenix, shown here, isa ﬁrst grader who loves school. A publication of The Hope Institute for Children and Famil f d Families
Angels of Hope Could You Be an Angel? Absolutely! When you become an Angel of Hope, Our Angels help The Hope Institute you join our most dedicated friends budget effectively for the year ahead in helping loveable children who by ensuring state-of-the-art medical, struggle with significant developmental educational and residential services disabilities. for thousands of girls and boys coping with autism, cognitive impairments and The frequency and amount of your gifts physical disabilities. are completely up to you. And because your Angels of Hope commitment As little as $5 a month can make reduces other Hope requests for your a tremendous difference in the life support, the impact of your generosity of a child battling developmental will be that much greater. disabilities. Your gift will do more good than you could ever imagine! Become an Angel of Hope today. It is easy! Just fill out the reply card on page 7 and mail it with your first gift. Or, visit www.thehopeinstitute.us to donate online. Thank you for being an Angel to Hope’s children! Chelsea is a happy, social young woman who loves the spotlight. Chelsea’s warm personality has won over her classmates, who voted her Prom Queen in 2011. Each spring, The Hope Institute’s Prom honors a king and queen chosen by Hope students. Former Prom Queen Elizabeth is featured on page 5. To refer a child for services offered by The Hope Institute or to learn moreme is a publication of The Hope Institute for Children andFamilies. For inquiries or comments, please contact us at about Hope services, (217) 585-5119, www.thehopeinstitute.us or please call PO Box 2817, Springﬁeld, IL 62708-2817. 217-585-5437. Writer/Editor: Courtney Reed 2 Spring 2013
Learning Language Opens Zachar y’s WorldZachary is learning the word toothbrush in speech therapy. He has autism andsigniﬁcant cognitive impairment that make speaking a tremendous challenge.Zachary is working on bathroom-related relate to others. In just one year, that childwords. Besides trying to say toothbrush, has been replaced by one who seeks socialhe is imitating using one. He is not interaction. Learning language is helpinggoofing around. Zachary is learning. him get there.“Imitation is the beginning of language He is learning social rules that go along withdevelopment,” says Emily Postelmans, words and meanings – making eye contactHope speech pathologist. “Infants coo and and taking turns. He is learning to play withmimic their parents’ mouth movements. friends and follow directions.Hope children make the same efforts to “Language is changing Zachary’s lifeimitate. They just happen to be bigger.” path,” Emily says. “If he can answer basicEmily holds up a picture of a toilet and questions and express what he needs andsays the word. Zachary watches Emily’s wants, he’ll be able to live in the community,mouth and then tries to say toilet. The have a job and actively participate in themore he imitates her language the more world.Zachary connects with what the word “He is well on his way to getting there.”means.“Our work with Zachary isprogramming a map in hisbrain that connects words toaction,” Emily says. “Wordsare meaningless unlessyou can attach them tosomething. ‘The’ is not animportant word for Zacharybut ‘bathroom’ is.”In his everyday life, knowingthe word toilet will enable12-year-old Zachary to tellothers what he needs.“He is discovering that whenhe says a word, somethinghappens,” Emily says. “Heused to grab my handand take me to what hewanted or make one syllablesounds.”Zachary also did not makeeye contact or know how to Zachary’s face lights up when he plays basketball in Hope’s gymnasium. He loves to toss the ball in the air as high as he can. me magazine 3
Living New Clothes Open Door to New Life for Rohan Rohan lives by rules uniquely his. He does not eat meals on Saturdays. He gets on the bus only after someone touches his foot to the ﬁrst step. School is where he drinks milk. This is how autism affects 16-year- While staff offered him other wardrobe old Rohan. The job of Hope staff is to choices, wearing them was solely understand his rules and help him alter Rohan’s decision. them or work within their confines. One day, he put on a new shirt. That Their first task was to enable Rohan to day, he began to build a new life. change his clothes. Rohan’s dismissal of his tattered “When we met Rohan, he had worn clothes tells his parents, Ranjan and the same clothes, down to underwear Jaya, that Hope is giving him what they and socks, for one year,” says Renea could not – a safe place to be his own Hartsock, a Hope qualified intellectual person. At home they had felt helpless disability professional. “He had made to protect him when he got “stuck” in a decision and could not be coaxed or his rules. fooled into wearing anything different.” “Rohan is a gentle soul,” Jaya says. Patience and trust helped free Rohan “But he also has the strength of six from his need to control his clothing. elephants. If he didn’t want to leave the grocery store, it took five police officers to get him home. If he wanted to go somewhere, he’d open the door and start running.” With Hope’s structured routine, Rohan has less need to put controls on his life. At the community home he shares with five boys, Rohan helps with laundry and dishes; at school he is reading and learning long division; and in his free time he loves to hula hoop and play soccer. “At Hope, Rohan is discovering who he is,” Ranjan and Jaya say. “It’s exactly what we dreamt of for our son.” Rohan, sporting one of his many new outﬁts, shows off with the hula hoop, a unique talent among his friends at Hope.4 Spring 2013
Taking Care Elizabeth Beats Medical Odds and Lives a Happy LifeElizabeth, at 22, is not supposed to be alive. Seizures in her infancy damaged herbrain. Doctors told her mom, Rhonda, that Elizabeth would die before age ﬁve.“How does a mother live with that?” medication while the frequency of herRhonda asks. “She had 30 seizures a seizures diminished.day. After one, she never spoke words Then Elizabeth was elected Promagain. To stop another, she had to be Queen.put into a drug-induced coma. “I cried when I saw her in her prom“Every time it happened, I thought it dress holding a rose,” Rhonda says.was the end.” “Elizabeth got to do something thatElizabeth was only five months when girls without disabilities get to do. I wasshe had a grand mal seizure that led so proud.”to discovery of tumors on her brain, Elizabeth recently transitionedan eye and a kidney caused by a rare successfully to a home for adults withcondition called Tuberous Sclerosis. disabilities, which convinces RhondaThat seizure was the beginning of she made the right decision when sheRhonda’s desperate search for a cure … called Hope.but she found none. “I didn’t give up my daughter that day,”Rhonda resolved to give her daughter she says. “I gave her the opportunity toa good life but she struggled. She tried be someone special.with little success to teach Elizabethto feed and dress herself. The family “And she is.”rarely left the house. When herson began sacrificing his life tohelp care for his sister, Rhondarealized something had tochange to benefit both children.“I called Hope but I almostbacked out,” she says.“Elizabeth was only 10. I felt likeI was giving up my daughter.”Hope therapists determinedElizabeth needed 45 secondsto process new information.When given this time, Elizabethstarted building new skills. Soonshe was sitting calmly, followinginstructions, using utensils anddressing herself with somehelp. Hope nurses trackedher seizures and reduced her Elizabeth, who doctors said would not be alive today, worked for 10 years at Hope to develop skills that would enable her to live in a community group home in adulthood. She achieved her goal. me magazine 5
Discovering Hope Sensory Gym Helps Mark Prepare to Learn Mark throws his body into the ball pit and rolls over the balls. Then he gets out and jumps in again. Mark is in The Hope Institute Learning Academy’s sensory gym and his play is therapy. Mark is a first grader with autism. His Mark’s physical work in the sensory brain has a hard time understanding gym, established by Chicago how his body should move. When he Blackhawks Charities, helps him be jumps into the ball pit his muscles feel attentive and focus on classroom work. deep pressure, which helps his brain His teacher, Mrs. McKinney, notices recognize those muscles and learn to a difference in his readiness to learn control them. when he returns from the gym. “Whether Mark is crawling through a “He is smiling, calm and ready to tunnel or holding a ball, his muscle focus,” she says. “He finishes his action tells his brain to get organized assignments independently and asks for other movements,” says Dr. Belinda for more. Anderson, the school’s occupational “He’s become a phenomenal student,” therapist. “His brain says, ‘I am pushing she adds. with my legs. I can do other things with my body now. I can sit in a chair. I can Like the sensory gym, Mrs. McKinney’s hold a pencil.’” teaching methods help Mark’s brain understand what needs to be done. Mark cannot speak words and he learns best visually. His classroom work starts on the left side of his desk and ends on the right. When he sorts silverware, for example, he can see how much work remains by looking at the pieces on his left. He also relies on a picture schedule, which tells him in pictures exactly what will happen in his day. “Like the sensory gym, visualizing his day puts him at ease,” she says. “When he arrives it’s the first thing he looks at.” Mark’s face lights up when his schedule tells him it is sensory gym time. He heads straight for the ball pit. Mark challenges his muscles in the sensory gym with support from Dr. Belinda Anderson, Hope occupational therapist.6 Spring 2013
Hope’s Children Depend on You Support Our Special Boys and Girls by Making a Gift TodayThank you for inviting me to become an Angel of Hope by offering The Hope Institute my committed financial support.❑ I accept your invitation and will do my best to give a gift of $_________ ❑ Monthly ❑ Every other month ❑ Quarterly❑ I prefer to charge my gift to The Hope Institute and have filled out the credit card information below.❑ I prefer not to make a commitment, but offer my support today with a gift of ❑ $25 ❑ $15 ❑ $_________.❑ Please charge $_________________ to my credit card on a one-time basis. I have filled out the credit card information below.Credit Card Information:❑ Please charge my ❑ Visa ❑ MasterCard ❑ American ExpressAccount Number: – – – Expiration Date: ______/______Printed name as it appears on your card: _______________________________________________________________________Signature: ___________________________________________________Cell phone/telephone: ___________________________Email: __________________________________________________________________________________________________Would you like to become an Ambassador of Hope?❑ Please contact me about becoming an Ambassador of Hope.Create a Legacy of Hope for the Children of The Hope Institute❑ I have remembered The Hope Institute in my will. Thank you for your generous tax-deductible gift. Please make checks payable to The Hope Institute. Please remove reply at perforation, fold and enclose it with your gift in the envelope provided. Thank you! Giving the Gift of Hope Create a Legacy of Hope When you remember The Hope Institute in your will or estate plans, you create a lasting legacy of hope for children who need so much. A bequest to The Hope Institute for Children and Families is a wonderful way to remember the special needs of Hope’s boys and girls far into the future. And it is a most meaningful way for you to be remembered. We wish to acknowledge the generosity of the following friends who have made bequests in their estate plans to benefit the future of Hope’s children: Sandra Atlas Bass and Edythe & Sol G. Atlas Fund The Francis and Gertrude Levett Foundation Clara Bobowik Angelina Maldarelli Helen W. Davis Vincenza Militano Dominick F. De Nardo Evelyn and John Morrison Charitable Fund Edgar Family Good Samaritan Fund Hilda Padgett Trust Peggy J. Egbers George A. Simms Raymond H. Ethier Trust Elodie Sollman Hortense J. Garry Anthony P Sortisio, Sr. . Lillian P Heimler . Tobin Family Trust Flora Paxton Hickman Foundation Edna Wiegand Renee Hill Trust For more information about how to include The Hope Institute in your estate plans, please call Tom LeClair at (217) 585-5119. me magazine 7
NON PROFIT The US POSTAGEHfor Children and Families OPE INSTITUTE PAID SOUTH SUBURBAN, IL PERMIT NO 799 15 East Hazel Dell Lane PO Box 2817 Springfield, IL 62708-2817 Gifts At Work Trustee Shares Cuisine and Talents to Benefit Hope Kevin Boehm loves food. He is in the right business as founder of Boka Restaurant Group and co-owner of Girl & The Goat in Chicago, which boasts Chef Stephanie Izard, former Top Chef winner. Amidst the demands of running eight top-rated restaurants, Kevin also devotes himself to Hope. “When I became a Trustee, I didn’t think I teacher in Hope’s principal chair. had much time to give,” Kevin says. “I was involved with numerous charities until I “Mr. Hathaway brought school to life for me,” realized I could make a greater impact by Kevin reminisces. “I’ve never forgotten that. Now focusing on one. I chose Hope and now I he’s doing the same for children with special can’t see my life without it.” needs.” Hope has never been far from Kevin, who Kevin supports Hope by reaching others’ hearts grew up alongside with great food. He opens his restaurants for the school in his Trustee meetings, gives away dinners to raise hometown. When money for Hope and brings world-class chefs to he visited campus Hope’s Celebrity Chef annual event. as an adult, he was He also tells everyone he meets about the boys thrilled to find his and girls of Hope. “Any friend of mine becomes favorite public school a friend of Hope’s,” Kevin says. “That’s my mission for Hope children.” Trustee Kevin Boehm opens the doors of his top-rated restaurants, including the nationally known Girl & The Goat, to make friends and raise funds for Hope.