Fall 2011 (Vol. 16, No. 3)

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This article is the second installment in a series of articles about nurturing social skills and facilitating friendships. Part 3 will appear in the next issue of reSources.

Developing and Maintaining Community Connections and Friendships

By Maurice Belote, Project Coordinator

“A good life is a human life. A human life is a social life. The essence of human nature is to be in the company of others—companionship, fellowship, and connection to others are essential to our well being.”

–Al Etmanski
Author of The Good Book

Friendships are critical to a person’s happiness. Families tell us that a primary goal for their sons and daughters is that they will have friends. Students tell us that spending time with friends is one of the main reasons—if not the most important reason—that they look forward to going to school everyday. Even as adults, current research tells us that we are more likely to be effective employees in the work place if we have a good friend at our place of employment.

The role of social connections changes over time, just as a child’s perspective of school life is likely to change over time. When children are young, their identity is established by factors mostly outside of their control (e.g., who their parents are, what neighborhood they live in, what school they attend, who their teacher is, what their brothers and sisters do, etc.). In a sense, individual identity at this age is assigned by adults. As students age, individual identity is connected less to those external factors and is more closely linked to the idea of groups: who the student knows, friends of those people’s friends, and what activities they are good at and enjoy. Many high school students tell us that afterschool activities are more highly motivating than the classes they take. They tell us that they endure the coursework and strive for good grades so that they have the freedom to participate in activities like athletics, drama, marching band, tech clubs, student government, 4H, or any of the other countless activities that students enjoy. During the teen years, these extracurricular activities seem to provide the setting for most enduring friendships.

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Leaving Home:  An Interview with Jackie Kenley

by Myrna Medina, Family Specialist

Jackie Kenley was a family support specialist for CDBS for many years.  The following are some of her thoughts on the transition of her daughter Laura, aged 26 and who has CHARGE syndrome, to supported living, based upon an interview I had with Jackie in August of this year.

Myrna:  Jackie, I’ve heard that your daughter Laura is doing really well since moving from your home in February of 2009 to a private residence with supported living services.  I understand that she has recently moved from there to The Arc of San Francisco’s apartments near Fisherman’s Wharf.  I also see that you seem to be doing well with this big change in your life.

As you well know, my role as a family specialist is to provide technical assistance and support to parents and family members.  I believe your story will be very inspirational to all parents including myself.  For many of us, it’s scary to think about our sons and daughters growing up to adulthood, so that it seems premature to talk about independent living.  Even though many of the children that we serve are currently young, it is important to think about what the future is going to look like.  That’s why I wanted to interview you today.  So, Jackie, could you please share your experience about Laura’s transition to adult life as well as her move out of your home and into independent living.

Jackie:  As you know, Myrna, we dreamed and hoped and actually worked on Laura’s plan for supported living for years.  We began by doing a “Future’s Plan” when she was in high school and thought about what a great home for Laura would look like.  We also kept putting plans for supported living in her IPP (Individual Program Plan) when we wrote it each year and kept reminding our Regional Center that this was a goal for Laura in her adult life.  I guess by talking about this and working towards this goal, our family began to see this as a reality.  However when the moment of her actually moving into her own home came about –well, it took some emotional transition time for us-especially for MOM!

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This article is the first installment in a two-part series.  Part Two will be published in an upcoming edition of reSources.

 Deaf-Blindness, Self-Regulation, and Availability for Learning: Some Thoughts on Educating Children with CHARGE Syndrome 

by David Brown, Educational Specialist

Sigmund Freud claimed that there was no such thing as bad weather, only the wrong clothing (obviously they never get tornadoes in Vienna). In much the same way we can say that there is no such thing as a child with CHARGE syndrome who cannot be educated successfully in a local school, only programs which are not the right ‘fit’ for the child.  Is it easy to get this right? Usually not, and it tends to become more of a challenge as the child grows older and moves into middle and high school, but there is evidence from a growing number of successful situations that demonstrates both the challenges and the attitudes and solutions that can lead to success.  Reports from a large number of parents and education professionals over the past few decades confirm again and again what a challenge this can be. Often the biggest difficulties relate to behavioral features of the children, but these are usually compounded by inappropriate responses from the education world itself. The chief culprits that I see are lack of creative thinking, stereotypical and inflexible attitudes, inappropriate assessment procedures, a refusal or inability to genuinely observe children, and a misinterpretation of things that are observed. Attempts are made to force the children into a pre-existing, standard mold, often with behavior plans as a significant extra component, and the end result is almost always to intensify the problems and move even further from any desired educational outcomes.

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FACT SHEET #44:  Integrating Your Child or Youth Who Is Deaf-blind into Groups:  Strategies for Families and Caregivers

By Gloria Rodriguez-Gil, Educational Specialist

Many children and youth who are deaf-blind share a particular challenge—the difficulty they have in joining and becoming a fully integrated member of their families and communities.  Overcoming these obstacles can be especially helpful in mitigating their social isolation.  Encouraging participation in groups such as one’s close or extended family, a regular set of friends who like to “hang out” together, school or religious related clubs, and so forth, can make life more fulfilling.  And remember that entering into new relationships, especially those involving peers during adolescence, can sometimes be intimidating, regardless of one’s degree of vision and hearing loss, and the presence of additional disabilities and/or health issues.

The purpose of this Fact Sheet is to highlight some interventions that are conducive to helping children and teens establish a sense of belonging at home, school and in the community.  Integration into groups is not likely to happen automatically for the individual who is deaf-blind; it requires determination, thought, and action. But it can start early on with the active leadership and support of parents and family members.

.... (Please open the link above for the complete article.)