Featured Individual: Ricky Hull

MAKING A DIFFERENCE

BY DAROLYN “LYN” JONES AND CHERYL CARLTON

RICKY HULL was born in 1960 with Down syndrome. His parents were told to place him in an institution and to “forget about him”. The doctor told Ricky’s parents that he would never walk, talk, or feed himself. Ricky’s dad disregarded the doctor’s advice and instead brought him home to grow up with his eight brothers and sisters. Ricky’s siblings were never told that he was any different or that he needed special treatment. In the medical community, Ricky was considered to be “higher functioning,” so he was able to attend a special school, but only very basic life skills were taught.

To Ricky’s siblings, he was just another kid in the family, so his siblings brought home their books, sharing their school lessons with him in the evenings and in doing so, taught him to read and write. Ricky attended school until he was 20 years old. He loved playing on his high school basketball team. After he graduated, Ricky went to work at Noble Industries, a sheltered workshop. His favorite job there was working with plants in the greenhouse. He worked there almost 30 years, until the passing of his mother in 2008.

Ricky then moved in with his sister, Cheryl and her husband, Kenny. He transitioned to working at a much smaller sheltered workshop with Sycamore Services in Danville, Indiana. Ricky loved his various cleaning jobs and especially loved cleaning nearby churches. He was involved in a community group that would go out once a week to movies, bowling, and restaurants. Ricky loved working and would have gone every day had the workshop been open. He never wanted to miss a day of work.

Sadly, a few years ago, Ricky began to exhibit signs of early onset Alzheimer’s, which is very common for older adults with Down syndrome. His sister, Cheryl, had to make the difficult decision to have Ricky retire from work at age 62. It has been difficult for Ricky’s siblings to watch him lose so many of the skills he worked so hard to gain—especially during a time when society and schools were not providing therapies and interventions to assist individuals with Down syndrome like they do now.

But Ricky is still Ricky. He has maintained his infectious smile and is still bringing joy to everyone around him. Whenever Ricky’s family starts to feel disheartened by the Alzheimer’s diagnosis, they remember what an amazing and extraordinary life he has lived and remind themselves that who Ricky is and what Ricky has accomplished can never be taken from him or his family.

On World Down Syndrome Day in 2019, Down Syndrome Indiana (DSI) encouraged individuals with Down syndrome to go out into their community and perform random acts of kindness to bring awareness to their many talents and contributions. Ricky decided to drop off doughnuts for officers at his local Avon, Indiana police department.

As soon as Avon Police Chief, Sean Stoops, met Ricky, they immediately became best friends. He asked about other activities that Ricky was involved in, so Ricky’s sister, Cheryl, shared with Police Chief Stoops that Ricky was raising money for his upcoming Buddy Walk. A few days later, a donation of over $700 was received from the Avon Police Department for Ricky’s Walking Warriors team. This helped Ricky meet and exceed his goal of $590. Down Syndrome of Indiana had announced that any team which raised $5,000 or more would have a billboard erected with their photo on it, so Ricky’s Walking Warriors team decided to dream big and set a new goal of $5,000.

Ricky’s story was picked up by the local news station, and it went viral. There was an outpouring of support from, not only family and friends, but the entire community. Ricky far surpassed his goal of $5,000, raising almost $9,000. Ricky and his family were so happy and proud the day the billboard was unveiled and couldn’t wait for everyone to see it.

Cheryl says that it is still unbelievable to think that when Ricky was born in 1960, his parents were told to hide him away in an institution and in that moment, there was Ricky’s smiling face on a giant billboard for all to see.

Ricky’s Walking Warriors team had over 70 team members who walked with him in last year’s 2019 Buddy Walk—Ricky and Chief Sean Stoops leading the team. Ricky’s story continued to go viral and was featured on additional local news stations and even news stations as far away as Germany and Switzerland.

Ricky’s family wants you to know that Down Syndrome Indiana (DSI) is dedicated to enhancing the lives of children and adults with Down Syndrome by providing services and support to both them and their families. DSI is always working to promote the value, acceptance and inclusion of people with Down Syndrome.

Ricky’s family first became involved with DSI through the Buddy Walk in 2014. The Buddy walk is held each year in Indianapolis in October—Down Syndrome Awareness Month. It is DSI’s largest fundraiser. Ricky’s team, Ricky’s Walking Warriors, has participated in the Buddy Walk each year since 2014. Ricky is believed to be the oldest individual with Down Syndrome still actively participating in the Buddy Walk.

Ricky and his team of Walking Warriors loves that DSI not only brings awareness to Down Syndrome, but also works hard to promote and advocate for the value, acceptance, and inclusion of people with Down Syndrome. As more and more individuals with Down Syndrome are living longer, DSI is focusing on also gathering resources and supporting families dealing with the newer and unique challenges of an aging population who have Down Syndrome. Ricky’s Walking Warriors is continuing to raise money in his name for the Buddy Walk each year, even though he is now in a wheelchair and unable to physically participate in the walk anymore. We do this to keep his legacy alive and to bring awareness and hopefully answers eventually to the Down Syndrome/Alzheimer link.

When new or expectant parents are surprised with the diagnosis that their baby has Down Syndrome, they usually feel scared and overwhelmed and many times are provided with outdated information for their child’s future.

Parents can and should reach out to Down Syndrome Indiana through either a phone call, #317-925-7617 or through their website dsindiana.org Those parents will immediately be given a new, updated parent packet of information and connected to someone who can answer their questions and address their fears and concerns.

Participating in DSI’s Buddy Walk is a wonderful way for families with children and adults with Down Syndrome to come and connect and share information and resources while also raising funds to support DSI’s many important projects.

And new parents should also know that DSI offers several support groups for both Moms and Dads like Lucky Mama Project and DSI D.A.D.S. And DSI hosts picnics, events, and gatherings though out the year to offer additional ways to connect in the Down Syndrome community.

Ricky’s family wants you to know that anyone with Down Syndrome can live a full and extraordinary life and make a difference, just like Ricky Hull.