Celebrating the lives of children

with developmental disabilities

You can imagine how often The Hope Institute celebrates. Every day Hope children face odds to do what most people take for granted – dress on their own, speak words, hold a spoon, adjust to changes. Every day they succeed.

Hope staff have more than enough hugs, smiles and high fives to celebrate successes. When Rohan decided to set aside the shirt he had worn daily for one year, word spread across campus within minutes. Staff in every corner of Hope knew this was monumental to his development.

Celebrations mark successes. But they also mark the difficult steps children take toward those successes. Struggles, even failures, are worth celebrating. They signify effort … and hope.

Jamie works at Hope’s Noll Café. One day she felt frustrated and left in the middle of her shift. If she were working anywhere else but Hope, 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.

“Hope is a terrific place for children.”“It was a great day,” says Pat Sajak of his visit to The Hope Institute Learning Academy, where Phoenix, shown here, is a first grader who loves school.

Spring 2013

ContentsAngels of Hope .............................. 2Could You Be an Angel?

Learning ........................................ 3Zachary Discovers Language

Living ............................................ 4A New Life Begins for Rohan

Taking Care ................................... 5Elizabeth Beats All Odds

Discovering Hope .......................... 6Sensory Gym Helps Mark Learn

Hope’s Children Depend on You .... 7Become an Angel of Hope

Giving the Gift of Hope ................. 7Leave a Legacy of Hope

Gifts at Work ................................. 8Trustee Reaches Donors Through Food

A publication of Thef Hope Institute for Children d and Families Famildd

Heart of Hope

2 Spring 2013

To refer a childfor services

offered byThe Hope Institute

or to learn moreabout Hope services,

please call217-585-5437.

Angels of HopeCould You Be an Angel?

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.

Our Angels help The Hope Institute budget effectively for the year ahead by ensuring state-of-the-art medical, educational and residential services for thousands of girls and boys coping with autism, cognitive impairments and physical disabilities.

As little as $5 a month can make a tremendous difference in the life of a child battling developmental 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!

When you become an Angel of Hope, you join our most dedicated friends in helping loveable children who struggle with significant developmental disabilities.

The frequency and amount of your gifts are completely up to you. And because your Angels of Hope commitment reduces other Hope requests for your support, the impact of your generosity will be that much greater.

Absolutely!

me is a publication of The Hope Institute for Children and Families. For inquiries or comments, please contact us at

(217) 585-5119, www.thehopeinstitute.us or PO Box 2817, Springfield, IL 62708-2817.

Writer/Editor: Courtney Reed

3me magazine

relate to others. In just one year, that child has been replaced by one who seeks social interaction. Learning language is helping him get there.

He is learning social rules that go along with words and meanings – making eye contact and taking turns. He is learning to play with friends and follow directions.

“Language is changing Zachary’s life path,” Emily says. “If he can answer basic questions and express what he needs and wants, he’ll be able to live in the community, have a job and actively participate in the world.

“He is well on his way to getting there.”

Zachary is working on bathroom-related words. Besides trying to say toothbrush, he is imitating using one. He is not goofing around. Zachary is learning.

“Imitation is the beginning of language development,” says Emily Postelmans, Hope speech pathologist. “Infants coo and mimic their parents’ mouth movements. Hope children make the same efforts to imitate. They just happen to be bigger.”

Emily holds up a picture of a toilet and says the word. Zachary watches Emily’s mouth and then tries to say toilet. The more he imitates her language the more Zachary connects with what the word means.

“Our work with Zachary is programming a map in his brain that connects words to action,” Emily says. “Words are meaningless unless you can attach them to something. ‘The’ is not an important word for Zachary but ‘bathroom’ is.”

In his everyday life, knowing the word toilet will enable 12-year-old Zachary to tell others what he needs.

“He is discovering that when he says a word, something happens,” Emily says. “He used to grab my hand and take me to what he wanted or make one syllable sounds.”

Zachary also did not make eye contact or know how to

Zachary is learning the word toothbrush in speech therapy. He has autism and significant cognitive impairment that make speaking a tremendous challenge.

LearningLanguage Opens Zachary’s World

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.

4 Spring 2013

LivingNew Clothes Open Door to New Life for Rohan

Rohan, sporting one of his many new outfits, shows off with the hula hoop, a unique talent among his friends at Hope.

While staff offered him other wardrobe choices, wearing them was solely Rohan’s decision.

One day, he put on a new shirt. That day, he began to build a new life.

Rohan’s dismissal of his tattered clothes tells his parents, Ranjan and Jaya, that Hope is giving him what they could not – a safe place to be his own person. At home they had felt helpless to protect him when he got “stuck” in his rules.

“Rohan is a gentle soul,” Jaya says. “But he also has the strength of six 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.”

This is how autism affects 16-year-old Rohan. The job of Hope staff is to understand his rules and help him alter them or work within their confines. Their first task was to enable Rohan to change his clothes.

“When we met Rohan, he had worn the same clothes, down to underwear and socks, for one year,” says Renea Hartsock, a Hope qualified intellectual disability professional. “He had made a decision and could not be coaxed or fooled into wearing anything different.”

Patience and trust helped free Rohan from his need to control his clothing.

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.

5me magazine

medication while the frequency of her seizures diminished.

Then Elizabeth was elected Prom Queen.

“I cried when I saw her in her prom dress holding a rose,” Rhonda says. “Elizabeth got to do something that girls without disabilities get to do. I was so proud.”

Elizabeth recently transitioned successfully to a home for adults with disabilities, which convinces Rhonda she made the right decision when she called Hope.

“I didn’t give up my daughter that day,” she says. “I gave her the opportunity to be someone special.

“And she is.”

“How does a mother live with that?” Rhonda asks. “She had 30 seizures a day. After one, she never spoke words again. To stop another, she had to be put into a drug-induced coma.

“Every time it happened, I thought it was the end.”

Elizabeth was only five months when she had a grand mal seizure that led to discovery of tumors on her brain, an eye and a kidney caused by a rare condition called Tuberous Sclerosis. That seizure was the beginning of Rhonda’s desperate search for a cure … but she found none.

Rhonda resolved to give her daughter a good life but she struggled. She tried with little success to teach Elizabeth to feed and dress herself. The family rarely left the house. When her son began sacrificing his life to help care for his sister, Rhonda realized something had to change to benefit both children.

“I called Hope but I almost backed out,” she says. “Elizabeth was only 10. I felt like I was giving up my daughter.”

Hope therapists determined Elizabeth needed 45 seconds to process new information. When given this time, Elizabeth started building new skills. Soon she was sitting calmly, following instructions, using utensils and dressing herself with some help. Hope nurses tracked her seizures and reduced her

Elizabeth, at 22, is not supposed to be alive. Seizures in her infancy damaged her brain. Doctors told her mom, Rhonda, that Elizabeth would die before age five.

Taking CareElizabeth Beats Medical Odds and Lives a Happy Life

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.

6 Spring 2013

Mark’s physical work in the sensory gym, established by Chicago Blackhawks Charities, helps him be attentive and focus on classroom work. His teacher, Mrs. McKinney, notices a difference in his readiness to learn when he returns from the gym.

“He is smiling, calm and ready to focus,” she says. “He finishes his assignments independently and asks for more.

“He’s become a phenomenal student,” she adds.

Like the sensory gym, Mrs. McKinney’s 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 is a first grader with autism. His brain has a hard time understanding how his body should move. When he jumps into the ball pit his muscles feel deep pressure, which helps his brain recognize those muscles and learn to control them.

“Whether Mark is crawling through a tunnel or holding a ball, his muscle action tells his brain to get organized for other movements,” says Dr. Belinda Anderson, the school’s occupational therapist. “His brain says, ‘I am pushing with my legs. I can do other things with my body now. I can sit in a chair. I can hold a pencil.’”

Discovering HopeSensory Gym Helps Mark Prepare to Learn

Mark challenges his muscles in the sensory gym with support from Dr. Belinda Anderson, Hope occupational therapist.

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.

7me magazine

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:

Hope’s Children Depend on YouSupport Our Special Boys and Girls by Making a Gift Today

Giving the Gift of HopeCreate a Legacy of Hope

Thank 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 Express

Account 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!

Sandra Atlas Bass and Edythe & Sol G. Atlas Fund Clara BobowikHelen W. DavisDominick F. De NardoEdgar Family Good Samaritan Fund Peggy J. EgbersRaymond H. Ethier Trust Hortense J. GarryLillian P. HeimlerFlora Paxton Hickman Foundation Renee Hill Trust

The Francis and Gertrude Levett FoundationAngelina MaldarelliVincenza MilitanoEvelyn and John Morrison Charitable Fund Hilda Padgett Trust George A. SimmsElodie SollmanAnthony P. Sortisio, Sr.Tobin Family TrustEdna Wiegand

For more information about how to include The Hope Institute in your estate plans, please call Tom LeClair at (217) 585-5119.

The

for Children and FamiliesHOPE NSTITUTEI

15 East Hazel Dell LanePO Box 2817

Springfield, IL 62708-2817

Gifts At WorkTrustee Shares Cuisine and Talents to Benefit Hope

teacher in Hope’s principal chair.

“Mr. Hathaway brought school to life for me,” Kevin reminisces. “I’ve never forgotten that. Now he’s doing the same for children with special needs.”

Kevin supports Hope by reaching others’ hearts with great food. He opens his restaurants for Trustee meetings, gives away dinners to raise money for Hope and brings world-class chefs to Hope’s Celebrity Chef annual event.

He also tells everyone he meets about the boys and girls of Hope. “Any friend of mine becomes a friend of Hope’s,” Kevin says. “That’s my mission for Hope children.”

“When I became a Trustee, I didn’t think I had much time to give,” Kevin says. “I was involved with numerous charities until I realized I could make a greater impact by focusing on one. I chose Hope and now I can’t see my life without it.”

Hope has never been far from Kevin, who grew up alongside the school in his hometown. When he visited campus as an adult, he was thrilled to find his favorite public school

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.

NON PROFIT

US POSTAGE

PAIDSOUTH SUBURBAN, IL

PERMIT NO 799

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.