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On the morning of July 11th, more than 32 families came together to discuss their hopes, fears, and dreams for their children, both teenagers and young adult children with Rubinstein-Taybi syndrome (RTS). Two young adult
women with RTS were also present with family members. Introductions and candid sharing provided the essence of the session, as participants shared common concerns about separation, independent living, community
integration, social supports, puberty and sexual identity development. Parents shared many important lessons they had learned from their experiences. First, consistent, persistent and at times, aggressive
advocacy with educational, vocational, medical and social service systems was viewed as essential to sucess by all participants. Second, they also found that encouraging self-advocacy by the individual with RTS presents
another challenge. In addition, recognition as normal of the often unpredictable feelings of grief, loss, fear, anger, and jealousy allows parents to forgive themselves and fine some peace. Finally, parents know
that their children with RTS need supports; however, they may at times forget that they too need support and have an identity beyond parent of a child with special needs.
The similarities among typical adolescents and teens with RTS were presented. It is important to keep in mind that the life stage of adolescence has a purpose. Adolescence is the time of separation and individuation
from fmaily of origin. It is a time marked by identity development and the establishment of intimacy. These goals are accomplished through the acquisition of developmental asks including: 1) the establishment of a
sense of belonging, 2) the acquisition of valued skills or competencies, 3) the development of a sense of self-worth, and 4) the ability to form reliable, mutually beneficial relationships. Teenagers accomplish these
tasks in a variety of ways including: conflict with parents, opposition behaviors, trying new things, changing likes and dislikes, talking about future plans, wanting/getting a job, becoming intimate with others, developing a
sexual identity. Although these goals and tasks are univeral, the manner in which they are accomplished, the complexity of the lan developed to accomplish the goal, and a greater need for formal community supports.
The teen and/or parent may need more direction to start developing a plan or vision for the future, and everyone, incudling the teen, needs to be more creative and willing to try something that may never have been done before.
Persistence and diligence, even in the face of seemingly insurmountable challenges, remain essential.
Finding competent community supports and trusting others with the care of their children may be lifelong challenges for parents. During the transition from adolescence to adulthood more outsiders may be involved than ever
before. Six key domains of assessment during the transition period were outlined and discussed. The domains of education, health care, employment, community connections, income and government supports, and
long-ternm home are divided into areas of assessment in the attached handouts. the purpose is to provide a mroe complete transition profile of an indivudal to assist in planning for hte transition period. It is
hoped that all players in the adolescent’s life will come together to discuss the development and implementation of a transition plan many times during the process. It is essential to identify an individual’s likes and
dislikes when developing a transition plan. Ways to detect what someone really prefers, in order to help them turn their preferences into a life-vision, were discussed and the corresponding handout is attached. Careful
monitoring nad coordination is necessary to insure a successful transition into adulthood.
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