Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 3 , Issue 1 Date: Spring, 2003 Topic: Expectations Through Life's Passages

We Don’t Know Where Potential Ends, So We Assume It Doesn't

by Peter George

Jeremiah George is a 15-year-old young man who has been diagnosed with global developmental delays affecting both physically and cognitively. He lives with his brother, Arie, a bright 17 year old, and his parents Peter and Gloria. They all live in a small, quiet New England town about 25 miles northwest of Worcester, MA in a 200 year old house with three dogs, one cat, some fish and lots of love.

When Jeremiah was ‘diagnosed’ at about 6 months of age, my wife and I were neither surprised nor disappointed, but anxious to proceed with all available interventions to help make Jeremiah the best he could be. Through years of physical therapy, two changes in schools, several surgeries and lots of rehab, Jeremiah is today a happy, well adjusted teenager entering puberty with a rush, and anxious to find his way into the adult world. He attends the New England Center for Children in Southborough, MA, which has provided him with an educational experience that could not be surpassed. He reads, he writes, he works and plays on the computer, and he’s comfortable with his environment in ways we never thought possible. His behavior is quite appropriate most of the time, and although he reverts to immature behaviors on occasion, he knows when to stop and how to take control of his emotions and get back to correct behavior quite quickly and easily.

JeremiahOver the past four or five years, we have tried to treat Jeremiah as normally as possible. He attends religious services with the family, he travels with us on vacations, he goes to museums, concerts, and all other family trips, and we do not tolerate immature behaviors during these special times. Jeremiah certainly understands the importance of these trips and visits, and always manages to stay calm and behave appropriately. He has never been made to feel ‘different’ and as a result he doesn’t act ‘differently’ either. We have learned over the years to avoid visiting with families that exclude Jeremiah or treat his differently from the other children. Family and friends all are required to accept him as he is, and show him the respect that any 15 year old would require. We all understand what Jeremiah’s limits are, and we accommodate them. On long trips we make sure he has plenty of time to rest and we provide him with books, CDs and games to keep him occupied during ‘empty’ time during these activities. We design our trips around his physical limitations, so he never feels that he is a burden, and yet we always manage to get done what we want simply through thorough planning and disciplined execution.

Part of our family life has been regular attendance at our local synagogue, Temple Israel, in Athol, MA. Our religious leaders have always been sensitive to Jeremiah’s needs and they have always included him in the services in ways that are appropriate. He has a very positive feeling about Judaism, and we have slowly provided him with religious education, never forcing it but simply offering answers to questions he has raised over the years. The two biggest issues have been getting him to understand that other children practice different religions, and that Judaism is ‘different’ but not ‘better’ than Christianity. We participate in Christmas activities with his friends, and we have succeeded in getting him to appreciate the celebration without feeling it is ‘his’ but belongs to all of us.

He has been scheduled for his Bar Mitzvah twice, but each time surgeries intervened. We are hoping to celebrate with him this coming fall, and with the cooperation of his body, we fully expect it be a joyous occasion for all of us.

At this stage of his life, we have begun to focus on two major areas of concern. He is entering puberty, and we have to address the issues of hygiene, dating and sexuality with him during the next few years. We asked NEC to build a hygiene unit into his curriculum, and they have done that very successfully. Each week Jeremiah is introduced to different aspects of his body, and how to deal with changes as they occur. They work with him on issues of cleanliness, and provide him with simple but effective techniques to keep his skin, hair and body as clean as possible during these turbulent years. They have also begun to introduce a simple unit on sexuality, and we are working with him at home to give him an understanding of how the human body works and how it changes over time. He has shown an interest in girls, but he really has no idea how to demonstrate his interest appropriately, so we have had to monitor this area very closely. He gets quite excited when he’s with a girl his age, and it will be a major goal of ours to help him understand how to interact with females appropriately both publicly and privately. Our goal is for him to have a social life at some point, if we can find families with daughters that are compatible with Jeremiah and willing to have THEIR child involved in a normal heterosexual relationship. To this point, we have had no success in finding any families willing to even begin the process, but we are optimists, and with time we expect to find success here. When Jeremiah is 22 we intend for him to be placed in a group home, and we feel that he must have the opportunity to live a reasonably normal life. We will make every effort to prepare him for that time, and are prepared to commit the time after he leaves us to give him the support he will need as he transitions out on his own.

His brother, Arie, loves him very much. He is Jeremiah’s best friend, and the single greatest challenge we see in the next two years is when Arie leaves for college. He is a junior now, so in about 15 months he will leave Jeremiah for an extended time for the FIRST time. We are taking Jeremiah on some of Arie’s college visits, to give him a sense of participation in the process. So far he seems to be enjoying the visits, but he knows that Arie will be leaving at some point, and he’s not terribly happy about that eventuality.

For 15 + years we have dealt with the challenges of raising a special needs son, and it has been quite a series of challenges for all of us. Our lives have been changed in major ways, yet we have managed to keep it all very close to ‘normal’ for all members of the family. Grandparents have had to adjust, and surprisingly, that has been fairly easy. At 57 my goal is to get Jeremiah placed and living successfully before I retire or die, and I believe I have a pretty good chance at succeeding. Arie is aware that after my wife and I are gone, he will be the primary caregiver, and he’s comfortable with the responsibilities that entails. It has been an interesting, challenging, often frustrating 15 years, but we believe we’ve made mostly good decisions, and we believe Jeremiah is being prepared for a happy and fulfilling life using all of what he was given. And that, we believe, is all any of us can expect.

The Shriver Center

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