dance4empowerment happenings

This morning was Gateways’ first session of the academic year.  Gateways provides high quality special education services for Jewish children with disabilities. The expertise and support at Gateways help the students succeed in a Jewish educational setting and participate in a meaningful Jewish life.  I volunteer one on one with a student at Gateways in activities inspired by Jewish holidays; and, we practice social skills and learn Hebrew in preparation for his bar-mitzvah.  In addition, I am introducing dance4empowerment movement program to Gateways this year!   So, today, as part of this new programming, we used dance as a tool for the students and volunteers to introduce themselves and remember each other’s names.  With dance moves inspired by some of the Fall’s Jewish holidays, students picked a move to match their name for everyone to repeat and dance along to.  It was so great to see how focused the students were when they danced or repeated movements.  This will be dance4empowerment’s first year long program; I look forward to watching the progress and the performance at the end of the year.

The beginning of the academic year also brought about a few more firsts for dance4empowerment.  We were contacted by our first volunteer, an eager dancer who would like to help dance4empowerment as part of her bat-mitzvah project!  dance4empowerment also received its first donation which will be used to purchase supplies for the movement program at Gateways. Please visit dance4empowerment’s new website, http://dance4empowerment.org , and find out how you can help too.

Thank you so much for your support and encouragement. Please continue to follow dance4empowerment and help spread the word about our program!

Dance, move, and empower,

Sierra 

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My visit to the MGH Down Syndrome Program

At the end of the summer, I visited Mass General Hospital’s Down Syndrome Program as a connecting component to my Independent Research and Design (IRaD) project on the genetics of Down syndrome.  The MGH Down Syndrome Program “integrates state-of-the-art resources with compassionate, comprehensive care through a multi-disciplinary approach.”  It consists of five distinct clinical services, split up by age group, to ensure each patient receive the best care appropriate for their age and needs.  The five groups are, Prenatal ServicesInfant and Toddler Clinic (ages birth-5)Child Clinic (ages 5-13)Adolescent and Young Adult Clinic (ages 13-21), and Adult Clinic (ages 21 and older).

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While shadowing at the MGH Down Syndrome Program, I was given the opportunity to spend time with a patient in the Infant and Toddler clinic as she went through a typical long day of appointments.  I observed her with an occupational therapist and a speech therapist, each checking her developmental progress; a nutritionist, checking her diet, likes and dislikes; and her doctor, Allie Schwartz, MD, an internist, pediatrician, and co-director of the Program.  I was fascinated by the patient’s interactions through each of her check-ups as well as her ability with sign language; although she has developmental delays, she knows approximately 20-30 signs and understands almost 80! I was also impressed with how similar her treatment was to other children.  Because she has an aversion to the texture of fruit, the nutritionist suggested heating it up or mixing it in with another food, the same advice that would be given for most infants.   

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The other co-director of the MGH Down Syndrome Program is Brian Skotko, MD, MPP, a board-certified medical geneticist. Dr. Skotko is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School; in addition, he is the co-author of national award-winning books Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.     Dr. Skotko was recently interviewed regarding his research connecting Down syndrome and Alzheimer’s disease. Dr. Skotko has a sister, Kristin, who has Down syndrome; she has been a source of inspiration throughout his career. 

I really enjoyed my time observing at the MGH Down Syndrome Program and meeting with the whole team. I was honored that Dr. Skotko took precious time from his busy schedule to meet with me and discuss his career, research, people with disabilities, and my dance program. I hope to visit the Program again soon!  

Dance, move, and empower,

Sierra

“The Politics of Inclusion in Boston” from JewishBoston.com (http://www.jewishboston.com/Sierra/blogs/5287-the-politics-of-inclusion-in-boston)

This summer, in addition to interning for Combined Jewish Philanthropies (CJP), I interned at the Massachusetts State House in Representative Kay Khan’s office.  I met Representative Khan, of Newton, MA, at the beginning of my journey to create a dance program for children with disabilities and we instantly connected through our love of dance (Rep. Khan studied ballet for many years and organized a ballet program for young children in her basement during the summer when she was a teenager). From the start, Rep. Khan has supported me, shared valuable advice, and communicated with me the important work she is pursuing as the co-chair of the Legislative Joint Committee on Children, Families, and People with Disabilities.  Rep. Khan is an inspiring advocate for people with disabilities and has been working hard to make Massachusetts, including her district of Newton, more accessible. 

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As an intern for Rep. Khan I learned a lot about local politics, state politics and, more specifically, the politics surrounding people with disabilities in Massachusetts.  Recently Rep. Khan and I sat down for an interview. She shared her background and interest in people with disabilities: her current role in the State House, modern challenges, and ideas about what’s to come.  Representing Newton since 1995, she has been “a strong voice on Beacon Hill for Newton and for the citizens of the Commonwealth.”

Rep. Khan had a strong connection to people with disabilities before she came to the State House because of her experiences as a registered psychiatric nurse clinical specialist.  Prior to becoming a psychiatric nurse she was a pediatric nurse at Children’s Hospital in Boston. Rep. Khan’s medical and psychiatric background influenced her interest in human services.  When first elected, state representatives have the opportunity to request committees they would like to serve on and Rep. Khan requested the Joint Committee on Human Services and Elder Affairs.  Approximately eight years ago the committee split due to its size, leading to the Joint Committee on Children, Families, and People with Disabilities, which Rep. Khan now co-chairs for her third session.

One of the greatest challenges that Rep. Khan has been working on for close to 15 years is the issue of accessible transportation in her Newton district.  The Newtonville, West Newton, and Auburndale commuter rail stations are all inaccessible—not only for people with physical disabilities, but also for elders and families with young children.  Rep. Khan hopes to turn at least one of the Newton commuter rail stations into a fully accessible stop and with federal transportation dollars granted to the state from the help of former Congressman Barney Frank, Rep. Khan hopes this project really make a difference for people of any abilities.

Over the course of her time as a Representative in the MA State House, Rep. Khan has seen equality and inclusion of people with disabilities “come a long way.”  In the next few years she thinks it will keep moving in the direction of helping more people to become fully included in society and continuing to ensure that their needs are met.  She thinks that Jewish organizations in the Boston area, like CJP, have a huge and successful influence on the positive change that Boston has seen in creating a more accessible and equal society.  She says, “Jewish agencies are amazing” and hopes to continue working with them in the years to come to continue bettering the lives of people with disabilities.

Dance, move, and empower,

Sierra