In-home recreation therapy care: a case study of Dillon.

After I graduated from the University of Northern Colorado in the summer of 1994, I began searching for a job as a recreational therapist One place I approached during my search was Respite Care, a home that provides short-term care for children up to the age of 21 who have disabilities. They told me that they were well staffed, but asked if I would like to be on their Special Connections list. Families that have children with disabilities or special needs can call anyone on the list to care for their children while they do what they need to, including just taking a break.

Respite Care provides training for persons on the list, including behavior modification, medication management, seizure management, respiratory training, and abuse/neglect information. They also provided information packets to families and care givers.

I received several calls to work and soon found that no matter how short or long a time I was with a client, I was able to use my recreational therapy skills to enhance our time together. In April of last year, I received a call from a mother, Coralee, who needed someone to watch her two-year-old son, with multiple disabilities.

When I arrived at their home, I met Dillon, who greeted me with a big smile. Coralee explained that Dillon was born with Sturge-Weber Syndrome, mild cerebral palsy, hydrocephalus and a seizure disorder. Sturge-Weber is a congenital syndrome frequently associated with intracranial calcification, mental retardation, and epilepsy; there are only 250 documented cases of this syndrome in the United States.

After reading the definition of Sturge-Weber, I wasn't surprised by the port wine-colored stain that covered the right side of Dillon's face. His mother explained that Dillon had glaucoma in the right eye and left hemianopia. She added that earlier that year, Dillon had a seizure that affected his right side.

When I started watching him, I was wondering, "What could I, as a recreational therapist do to help Dillon?" Dillon had a wonderful personality, but could not sit up. He did, however, have some upper body strength and was able to get around slowly by pulling himself with his arms.

At the time I started working with Dillon, he could pull himself onto a homemade platform, but he would roll off. His stroke had caused him to lose his natural instinct to catch himself. Since then, I have taught Dillon how to back off of the platform and also to put his arms down to catch himself when he comes off of it.

My recreational therapy training had not covered working with small children, so I decided I would just get on the floor and play with Dillon. I wanted to learn about him and find out what he liked to do. He liked the same things most two-year olds like, to play, get lots of attention, and, even throw a tantrum.

While Dillon and I played, I talked to him constantly. I told him what we were doing or what toy we were playing with, or I would ask him questions and help him learn what the answers were. I just kept talking. Soon Dillon started saying more words, and sometimes he would even come up with a full sentence. I modeled behaviors for Dillon and he seemed to be soaking up as much information as I could give him.

I sat Dillon up to play with toys or to read books. I started out giving him a lot of physical support and then slowly I would move the support away for short periods of time. Now he can sit by himself for two to three minutes, plus, be is able to catch himself when he starts to fall over.

As I worked with Dillon six hours a day, five days a week, he became much stronger. Each month the occupational therapist would give him a list of things to accomplish; homework. By the time she came back, Dillon had usually mastered most of his assignments.

Dillon is a miracle child. Born at only 25 weeks and weighing only two pounds and one ounce, the odds were against him. He had many problems, and the doctors did not think he would live beyond one year. He celebrated his third birthday this February, and appeared close to walking at that time.

Dillon's doctors cannot believe his progress. His parents and I feel the constant stimulation--verbal and physical--is what keeps him strong. Through his recreational therapy, Dillon has acquired self confidence and self esteem. In addition, he has learned, and continues to learn, many of the life skills he will need.

The in-home recreational therapy care that I provide for Dillon is in some ways different than what the traditional recreational therapist would provide, yet in many ways it is similar. No matter the setting, I don't think that therapeutic recreation can get any better than this!

For more information on setting up a "Special Connections" group in your area, please contact Respite Care, Inc., 400 Wood Street, Ft. Collins, CO 80521, [phone]