The first support group meeting will be held on Saturday, September 18, 2010 at 11:30 AM. We will kick off with a family picnic at 11:30 AM, followed by a presentation at 2 PM in Oak Park, Illinois.
We are pleased and honored to have with us, Lennie L. Wilson, MSN, APRN, CNS-BC. She is a registered professional nurse (Lewis University, Lockport, IL; Lehman College, Bronx, NY). Those of you who have seen her on the Yahoo Group for a while have benefitted from Lennie's knowledge of Trisomy X and her care of our girls through her reporting on research and her helpful responses. Lennie sent us the following personal statement:
"I went to graduate school on a full scholarship and stipend from the NIMH due to the shortage of child and adolescent mental health/psychiatry/behavioral health specialists. C&A psychiatrists continue to be in short supply. My degree is in the subspecialty of child and adolescent psych nursing. I immediately went to school for family therapy training.
I attended the Family Institute of Westchester where feminist-based family therapists thrived and wrote such books as "the expanded family life cycle", ethnicity and family therapy, genograms in family assessment, you can go home again and women in families: a framework for family therapy. I remain connected to this vital community of practice. The model of family work invites systemic thinking as well as creativity for interventions aimed at family life. Along the way, I got heavily involved with the multicultural family therapy institute in New Jersey. This model builds upon the themes inherent in systems family therapy and works for the acceptance and celebration of cultural and ethnic difference.
I found KS&A and its families in 2000. I was in the midst of compassion fatigue and had decided to leave nursing and psychiatry. A parent reconnected with me because his son was about to be born and had the extra X signature. I knew how to access the medical libraries in nick and find research and reviews written for his son's condition. To be honest, I was horrified by the lack of directed research into that condition. Then I found the girls and their families. The lack of directed research for the girls was beyond scary. To date, Trisomy X is the least researched of the three trisomies. It is as if the girls have a double whammy.being female and being affected by a condition which confers brain and body differences. It's hard being a girl in a research and science environment in which men and boys are detected and treated based on their gender and sex, where models of evaluation and treatment are based upon a male body and where past intervention and/or treatment did not take into account sex differences in disease progression, women's ways of knowing, and the female body. Our girls are detected at the lowest rate and when detected they are older and have greater impairments. Learning disability research is focused upon boys rather than the disability itself. Girlhood with its relational, socio-emotional, built in stress vulnerabilities as well as biological differences contribute to the difficulties of research devoted to women everywhere. It's difficult but not impossible.
Our work at KS&A seeks to take into account the feminine gestalt. We must find ways for the girls to be identified at birth and receive cost effective and evidence-based evaluation and treatment delivered by the best of researchers and professionals, be included in every study of disease, disorder and disability so everyone understands how these factors impact typical female development, have productive and meaningful work A life full of connection and relatedness, built upon the recognition of her strengths, opportunities to be a contributing citizen, her need to express herself in creative and original ways and her real need to give and care for others."
The title of Lennie's presentation will be Trisomy X: the past, the present and the future.
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Last update September 3, 2010