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Down Syndrome Program News
Volume #1, Newsletter #5 May 2015
 
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Dear Friends of the Down Syndrome Program,

Hope everyone is enjoying this wonderful weather!  We are excited this month to be interviewing three candidates for our new Apprenticeship Program.  The Down Syndrome Program at Boston Children’s Hospital is committed to supporting employment and vocational training for individuals with Down syndrome and we are thrilled to be launching this new initiative, which is the first of it's kind.

The Apprenticeship is a 2-year training position developed to allow ongoing vocational training opportunities for individuals with Down syndrome. The Apprentice will follow a two year training program and work closely with the Program Coordinator and Patient Liaison to develop job skills necessary for successful employment in community settings. 

We are excited to highlight Nate Simons this month, who is our Patient Liaison.  He has been working in our program for almost three years!

 

Sincerely,

Dr. Nicole Baumer and Dr. David Stein
Co-Directors, Down Syndrome Program
Boston Children's Hospital


 FEATURED TEAM MEMBER

 
Nathan (Nate) Simons has been the Patient Liaison at our DS Program for the past two years! Nathan is a graduate of the North Reading school system. After graduating North Reading HS, Nathan went to the Riverview School in Cape Cod. While at Riverview, Nate took courses in retail, maintenance, animal care and child care. He had internships including working on a horse

farm, working in Advanced Embroidery, and the Riverview Café. He had part time jobs at a local golf course doing maintenance and a local Shaw’s supermarket bagging groceries.

Nathan works in our DS program three days a week in all of our clinics. He also works part time at a CVS store in Cambridge stocking shelves and other duties. Nathan takes the MBTA to and from work. Nathan has his driver’s license but sticks to the MBTA in the city! He saves driving for when he is home visiting his parents.

Nathan is busy with work but not too busy for the fun stuff. He loves to play xbox and follow the Red Sox and all other Boston sports teams. He also likes to ride his bike, and run or walk around his Brookline neighborhood. He has been a long time participant of Special Olympics. He is involved in golf, swimming and softball through the Brookline recreation department. He also enjoys checking out new movies with his girlfriend.

Nate loves his job here at Boston Children’s and is looking forward to helping our Apprentice settle in and learn the position! His favorite part of his job is to play with the children and guide families through their day!

Quotes from Nate:
"

TEAM DOWN SYNDROME!!!! 
The DSP relies on your support for clinic programming and many new initiatives to improve the lives of individuals with Down syndrome. 

WAYS TO HELP:
 

1)  JOIN OUR TEAM - Come to Assembly Row in Somerville on June 14th and walk with us! 
Create a
 personal page, do fundraising and come celebrate the day with our team!

2)  BE A VIRTUAL WALKER - Sign up, create a personal page and fundraise but join us in spirit that Sunday of the walk

3)  MAKE A DONATION -  Go to our team page and find a walker to sponsor!  Each walker is encouraged to find 21 people to donate at least $21 to help raise funds!  Any donation you can make would be most appreciated!  We try to raise at least $21,000 each year! 

We would love to have you join our team!  Read more about our programming on the team page:  SIGN UP TODAY!!!!
CARE Conference: Making Respite Happen

This is your village and this conference is for you -- Caregivers AND all who support caregivers through work and personal lives: family, friends, professionals, volunteers, faith leaders and more!

Join us in identifying respite resources and exploring innovative ways individuals and organizations make respite happen -- supporting caregivers in meaningful ways.

Our very own, Dr Emily Davidson will be presenting:   Respite Now: Self-Care for the Busy Caregiver

This interactive seminar gives caregivers a chance for respite during the busy conference day and to experience the benefits of self-care. The session will begin with a brief overview of the impact of caregiving on caregiver health and brainstorming about barriers to self-care. This will be followed by a chair yoga and meditation session appropriate for participants of any experience level and any health status. Aromatherapy and Reiki will also be shared to deepen the opportunity for relaxation. We will close the seminar with practical tips for increasing self- care in the midst of the busy-ness of caregiving.


MORE INFO:  http://massrespite.org/



NATIONAL DOWN SYNDROME CONGRESS CONFERENCE!

Will you be in Phoenix at the NDSC Annual Conference this June?  Let us know!   Team members from the Boston Children's Hospital Down Syndrome Program will be presenting at the conference and will be there to learn about great things to bring back to our clinic. 

Drs Stein and Baumer will be doing a talk on "Behavior and DS: A Brain-Based Perspective for Identification and Treatment"

Dr Davidson will be doing a presentation on Saturday morning 7am - 8:30am on "Creating Calm in the Chaos: How to take care of your caring self"

It's not too late to sign up if you want to attend this conference!  Check it out


RESOURCES TO KNOW ABOUT! Federation for Children with Special Needs

MA Family Voices Listserv:  A wonderful listserv that shares resources through posts and replies to participant inquiries!  So much info gets passed through!  SIGN UP TODAY!

Parent Training Institute:  Do you find yourself wishing you knew more about laws that support your child/student or that you wish you understood the Individual Education Program (IEP) process better or how to request a special education evaluation? Stop wishing and register for the “Parent Consultant Training Institute” near you! The Parent Training and Information Center at the Federation for Children with Special Needs is offering an opportunity for Massachusetts parents and professionals to learn more about the state and federal Special Education laws and process. We believe that parents and professionals who understand the process are better able to collaborate effectively to develop supports and services that enable children/students with disabilities to succeed.  Check out site for more info!

Free workshops:  FCSN offers amazing free workshops across the state and throughout the year!  This are MUST ATTEND's for families who are entering the school system...topics are Turning Three, Basic Rights and An IEP for my Child!  See list of upcoming workshops!

TASH Conference:  MAY 12!!!   This regional conference will elevate your commitment to inclusive practices! We will review the evidence: why is it imperative for people with significant disabilities to be included? What happens to communities as a result? What are the evidence-based practices that support people with significant disabilities and support needs to succeed in typical community settings throughout their lives? Topics will feature philosophy and values that guide practice; successful family and community engagement strategies; and the role of all stakeholders.  MORE INFO HERE!

Clinic Appointments!


Is your child due for their annual visit to our DS Clinic?  If so, please reach out to Angela to get help c
oordinating appointments to fit your child's needs.  We offer appointments on Tuesday and Wednesday afternoons for all ages.  We have our Infant/Toddler clinic on Thursday mornings.

If you have questions on what your child needs at this time please reach out and we can help you!

Our Vision

All individuals with Down syndrome are physically and emotionally healthy, engaged at their highest capacity in school or vocation, have meaningful family and social relationships, and are valued members of their communities.

Our Mission

To partner with families, interdisciplinary providers, and researchers to evaluate, treat, and investigate medical, cognitive, neurodevelopmental, educational, mental health, behavioral and social needs of individuals with Down syndrome from the time of diagnosis until transition to adult care.