Daniel greeted me in the living room of his home in Peoria with a twinkle in his eyes, a cheery smile and a high five. The tall lanky 26 year old did not know me and it was our first meeting, but his spirited welcome and immediate acceptance of me was a comforting gesture on his part. The anticipated feeling of a somewhat awkward nervousness during an initial introduction between two strangers was simply eliminated. We were at ease and Daniel had made sure of that.
Daniel it seemed was surely happy to meet someone new, but he was unquestionably more eager on this day to see his mother, Charlotte. Their greeting was immediate and joyous for each. She had stopped by Daniel’s house to make the proper introductions and to ask her son if he would like to go to with us to his favorite ice cream shop. Daniel is nonverbal, but did not have to speak in order to communicate his intention to go to one of his favorite destinations for ice cream. He readily moved with his mother in the direction of his bedroom to retrieve his coat.
Such a lighthearted sequence of events had not always been possible for Daniel and his immediate family.
In a recent ARC of Illinois interview with Daniel’s mother and his father, Mike, each shared some of the significant struggles they all had experienced over the years when Daniel was growing up and living in the family home. “Probably the first big challenges we had was his inability to sleep through the night. He would lay in his crib at night for hours and scream and he wouldn’t let us comfort him. Then we started seeing behavioral issues,” said Charlotte. “As he grew the behavioral stuff became much more challenging…biting scratching and screaming,” she continued. “He has no speech even today and is incontinent. He has very, very poor fine motor skills and very poor gross motor skills.”
At a certain point in Daniel’s late teens, Charlotte and Mike realized that managing Daniel’s behaviors had completely exhausted them. ”We were just doing what we needed to do,” said Mike. As difficult of a decision as it was, they felt the need to explore residential placement. “We were doing him a disservice by keeping him at home. We didn’t have the skills. We were harming him in a way,” said Charlotte. With the help of friends and colleagues they set out to find an appropriate home for Daniel.
For the past six years, Daniel has been successfully living in a community home with three other gentlemen, which is just a few minutes away from the home in which he grew up. Daniel lives in a CILA (Community Integrated Living Arrangement) that provides twenty-four hour supervision. Staff members there are trained to implement a comprehensive individualized service plan that addresses Daniel’s needs.
All services are being provided by Trinity Services, Inc., a well established social service agency based in New Lenox, IL that is committed to providing comprehensive services for people with intellectual/developmental disabilities. “They’re incredible,” said Charlotte. “Trinity truly knows how to do behavioral supports. Daniel improved dramatically and quickly,” she added.
Despite the behavioral challenges, Charlotte and Mike see Daniel as a loving and communicative son. “I think Daniel is a very bright young man who can’t share his intelligence,” said his mother. “He smiles. He is incredibly loving. He is very assertive and is very communicative. There is a lot of communication that is just love…he is always pulling people to him for a hug or a ‘head bump’”, she said. “He has the ability to connect with people on a real basic level. For the most part the staff really like it,” added Mike.
Regarding how others might benefit from Daniel’s presence living in the community, Charlotte explains, “Daniel teaches you about what is important, about what is not important, he teaches you about being brave. He’s taught us how lucky we are. I suspect he teaches others that same story.”
At the ice cream shop, Daniel’s attention was seldom diverted from his mother as he easily and quickly swallowed spoonfuls of an Oreo Cookie Blizzard. Between bites he occasionally “head bumped” his mother with a laugh and a smile as she did the same. These seemed to be joyful and contented moments for mother and son engaged in a reliable routine forged in the distant past when times were more difficult. Now however, there is a life plan and the times are different. Favorable times for everyone indeed.
As for the future, both Charlotte and Mike are hopeful that new strategies will be developed using advances in technology that will allow Daniel to further augment his communication ability and improve his overall skill development. “So many things in our world you can do at the push of a button,” said Charlotte.
Charlotte and Mike want everyone to know that they, too, can have their loved one living close and active in their lives, no matter how huge their disabilities are. Daniel’s challenges are as big as anyone’s in an institution. If Daniel can live successfully in the community, then anyone can. Their message to you, “GO FOR IT!”