August, 2016 Newsletter - Down Syndrome Association of Central
Transcripción
August, 2016 Newsletter - Down Syndrome Association of Central
July/August 2016 Volume 16, No. 4 the eXtra! A publication of Down Syndrome Association of Central California Our mission is to enhance the quality of life for all people whose lives are touched by Down syndrome. Down Syndrome Association of Central California presents Tools for Success Conference 2016 We are excited to invite you to our 1- day conference for Parents, Caregivers, Educators, Health care providers, Case managers and Professionals. The day will provide you with information on current issues and topics impacting the special needs community. Participants will leave with tools, expertise, and a better understanding of the landscape of disabilities at large, to help enhance your knowledge and serve as a resource for others. Saturday, September 17, 2016 Registration $60 per person *price includes light breakfast & lunch Double Tree by Hilton Fresno Convention Center 2233 Ventura Street Fresno, CA 93721 More details & registration form available on page 8 & 9 SAVE THE DATE! Family Festival of Super Heroes! Join us for a SUPER evening filled with Food, Games, Face Painting, Bounce Houses and MORE! •Friday, September 9, 2016 from 6-9pm •at the Well Church-Fig Garden Campus: 4545 N Palm Ave, Fresno 93704 •Cost is $1 per person, 2 yrs & older Please RSVP at www.dsacc.org/events/family_festival or contact DSACC staff at 559.228.0411 Tickets will be available at the door If you have Down syndrome and are interested in performing on stage at the event contact coordinator, Nancy Martin @ 559.759.4420 for details! Saturday, October 22, 2016 at the Clovis Rodeo Grounds 5K Timed run/walk & 1 Mile awareness walk * Kid Zone * * Live Entertainment * * Exhibitor Area * * Face Painting * * Food Court & more! REGISTER TODAY! Registration form & more walk details on page ...10 If you are a vendor interested in participating in our vendor area or sponsoring the event, please contact DSACC staff at 559.228.0411 In this issue... Family Festival............. P. 1 Recaps....................... P. 3 Conference................. P. 1 &8-9 Step Up for Ds............ P. 10 & 11 Birthdays & Kid Corner. P. 4 DSACC Updates......... P. 2 Fort Knox................... P. 12-13 Blaze Pizza................. P. 5 &19 Board meeting schedule P. 2 Calendario de eventos. P. 14-15 Calendar of Events...... P. 6-7 Office Hours............... P. 2 1 Donate Today............. P. 7 Artículos en español ... P. 16-19 DSACC Updates Introducing Office Manager, Cindy Volpa The Extra is funded in part by The Fansler Foundation. Contact Information: Down Syndrome Association of Central California 1491 W. Shaw Avenue Fresno, CA 93711 Phone: (559) 228-0411 Fax: (559) 228-0414 E-mail: [email protected] Website: www.dsacc.org Jennifer Whiting- Program Director Cindy Volpa- Office Manager Lourdes Arias: Spanish Language Editor, [email protected] Statement of Policy and Disclaimer: The Extra is the periodic newsletter of (DSACC) Down Syndrome Association of Central California, which serves Central California. Subscription is free to members & friends of the Association. DSACC is affiliated with N.D.S.C and N.D.S.S. The Extra reports items of interest related to Down syndrome, so that the reader may make informed decisions concerning Down syndrome related issues. Any opinions, findings and conclusions, or recommendations expressed in The Extra are those of the individual authors and do not necessarily reflect the views of the officers, Board of Directors, DSACC organization or its membership. All medical related issues should be thoroughly discussed with your doctor before being implemented. DSACC does not endorse the writings of any individual, professional, or organization. 2016 Officers & Board of Directors Denise Allshouse - President Deepali Desai- Treasurer Chandel Perkins- Secretary Beth Ford - Member at Large Shelly Schmidt- Member at Large Anytime you're near the DSACC office, please come in to say hello! I'm so happy to join Jennifer as the new Office Manager. After almost 20 years in Fresno Unified as a regular education teacher at Figarden Elementary, I recently retired and have been enjoying my time reading, hiking, gardening, volunteering and raising a golden retriever puppy. My two children are grown and live in northern and southern California. During my teaching career I loved making connections with children and their families and still stay in contact with many students in high school and beyond. I look forward to meeting all of you at our upcoming events or talking to you when you call in. NEW BOARD MEETING SCHEDULE At a recent board meeting, a new schedule for general board meetings was adopted and approved. Please note the new General Board Meeting Schedule that will be effective immediately. Meetings will now take place January, March, April, August, September, and December each year. Meetings will be announced at the closing of each board meeting and through written or oral correspondence. Board meetings are open to the public if you are ever interested in attending and providing input on the direction of the organization. Be sure to check page 2 of the newsletter in future additions for meeting dates. 2016 Board Meeting Dates Wednesday, August 17, 2016 Wednesday, September, 21, 2016 Wednesday, December 21, 2016 I'm excited to take part in all the upcoming fun scheduled Meetings are from 6-8 pm at the this fall, be sure to check out all DSACC office: 1491 W. Shaw the information on upcoming Avenue Fresno, CA 93711 Sib Shops, Creating A Plan: Footprints for the Future, Family •Office Hours• Festival of Super Heroes, the Mon. thru Wed. from 10 am - 3:00 pm Tools for Success Conference, or by appointment. and Step up for Down Syndrome Thurs. & Fri. by appointment only and so much more! All the or for scheduled events. details can be found in the calendar section and other DSACC will be CLOSED: pages of this edition of the eXtra! Monday, July 4, 2016 Look forward to meeting you! Cindy Volpa 2 If you need to reach someone at the DSACC office, please call (559) 228-0411 or E-mail [email protected] and someone will respond as soon as possible Fresno Grizzlies Game Thank you to everyone who came out to enjoy some Fresno Grizzlies baseball on May 27... while the Grizzlies bats were cold, our three advocates who threw out the first pitch were ON FIRE! Tony Phillips, Emily Star Ford and Stephen Zimmerman each threw out a first pitch and wowed the crowds! It was a wonderful evening! 5 & Under Socials Recap from City of Merced. This year we held three socials; Fresno, Merced and Visalia. At the Fresno area social we had an incredible time at The Little Gym in Fresno with a HUGE turnout and lots of new families coming out for the first time! Thank you to Deepali Desai who managed everything the day of the event, and to the great staff at Little Gym who entertained and wore our little ones out! In Visalia, we had Imagine U In Merced we had some wonderful families turn out at the Rossotti Ed-ZooCation center in Applegate Park. The afternoon was filled with fun bounce houses, food, bubbles and new friends! We even got to meet and pet some animals that were out at the park celebrating Earth Day with staff Save a tree and sign up to receive the eXtra electronically at www.dsacc.org! (opt-in field is on the base of home page) Have you seen the incredible photo books created for DSACC events? You can purchase your own copies by visiting our Shutterfly Share account at www.dsacc.shutterfly.com! You will need to login or create your own Shutterfly account to place the order. Enjoy! Interactive Children's Museum all to ourselves! What an incredible facility and we thank the few families who came out to enjoy the evening of science, play and food! Thank you Thrivent Financial for doing free child fingerprint and safety cards for our families! These events would not have been possible without the support of First 5 Merced County, First 5 Tulare County, The Little Gym of Fresno, Rosa's Italian Restaurant, Tyler Hirschkorn of Thrivent Financial, City of Merced and the wonderful volunteers who set up, cleaned up and had a whole lot of fun in the middle! We can't wait for next year! Looking for some DSACC gear? We have some great merchandise for sale! • I 5 DSACC shirt .. • Countdown to awesome shirt ... • Love doesn't count chromosomes . • DSACC blue drink tumbler • DSACC socks....... • DSACC portable phone charger Purchase them at the DSACC office or at any of our events until they are sold out! Contact DSACC staff for more info 559.228.0411 or [email protected] 3 $15 $20 $20 $10 $10 $15 Birthdays If your birthday is not listed here, please call us and let us know. We will publish missed birthdays. Abel Ramirez Adam Mercado Aishwarya Lopez Alejandro Venegas Alexis Fajardo Alondra M Baez Andres Mendoza Galvan Angel Vaca Aguilar Anna Cruz Anthony Sierra Anwar Youssef Ariana Silguero Aron Cortes-Martinez Asanti Lara Austin Lopez Ava Lindsey Rivera Axel Sanchez-Santiago Baby Girl Cruz Baby Girl Segura Breece Campbell Brisa Avalos Cambria Travis Carlos Murillo Jr. Damion Kiessling Daryl Huang Delia Romero Dionicia Carston Dulce Cruz Dustin Franks Elizabeth Allan Elizabeth Galindo Emilio Ramirez Emma Jackson Everett Spuhler Ezra Lee Baca Faith Lopez Faith Tienken Franco Franco Valdepena Genesis Gutierrez Gladys Hernandez Hannah Stidham Hope Elias Hugo Torrez Icelia Rivera Indyka Margaret Sanchez Isaac Valle Isaiah Flores Jack Fuguglietti Jaileen Rodriguez Hernandez Jaime Mesillas Jaleena Rayas Jason Moreno Jayden Hernandez Jimena Sanchez Jordan Isaac MartinezRodriguez Jovanni Hamirano Kaitlin Kaycee Johnson Kastle Keala Kayloni Bernal Lamberto Contreras Liam Baugh-Jasso Lily Gerawan Lucille Noel Conto-Jones Luis Angel Basilio Madelen Fox Madison De Leon Manny Duran Maria Figueroa Marian Morales Marian Puente Marissa Herrera Matthew Hovda Melody Degadillo Mereyda Mancilla Michael DeMaira Miguel Verduzco Mordecai Aden Green Natali Poudrier Natasha Rodriquez Nichola Moreno Nicholas Geston Noah Mendoza Noella Rivas-Comlos Oscar Ramirez Pablo Antonio Perez Jr. Pablo Ibarra Jr Patrick Jordan Randed Hernandez Rhiannon Kumulian Ryan Allshouse Samantha Morales Sammy Silva Sarai Arellan Savannah Scott Selene Ortiz Sincere Harris Roberts Spencer Medina Stella Elizabeth Lopez Stella Lopez Steven Jones Teagan Feist Teegan Mora Victor Trujillo Victoria Martinez Violet Cano Wyatt Perkins Xitlali Bautista Yanexil Romero KID'S CORNER. . . SUNDAE FUN DAY! 3 Ways to chill this summer Frozen Yogurt Fruit Bark •1 large container of plain yogurt •1 Tablespoon vanilla •2 cups chopped fruit •*sweetener like honey or agave can be used if you like your yogurt sweeter Instructions Line a large baking sheet with parchment paper. Mix the plain yogurt with vanilla. Pour the yogurt onto the baking sheet and spread a little to even. Sprinkle on the chopped fruit and freeze for 3-4 hours until frozen solid. Slice up and enjoy! Frozen Coconut Fruit Cups •Dixie Cups •1-2 cups fresh-diced fruit •Coconut water Instructions Place chopped fruit into Dixie Cups. Pour coconut water over fruit, freeze until solid (overnight) and enjoy! Chunky Money Popsicles Popsicles: •Dixie cups •1/4 cup chocolate syrup •3/4 cup milk •2 tablespoons peanut butter Magic Shell Coating: •3/4 cup chocolate chips •2 tablespoons coconut oil Toppings: •1 banana •1/2 cup chopped peanuts Instructions Combine chocolate syrup, peanut butter and milk in a blender and 4 blend until combined. Set aside.. Slice a banana into thin slices. Place the banana slices onto the inside walls of the Dixie cup Pour the chocolate and peanut butter milk mixture into the Dixie cup, filling each ¾ full. Place popsicle sticks in mixture, and place whole cup in the freezer until firm (overnight). When the popsicles frozen, combine chocolate chips and coconut oil in a glass measuring cup. Microwave on high at 30 second intervals until the chocolate is melted. Roughly chop the peanuts and place into a small bowl. Cut and remove paper cup from frozen popsicle. Dip the frozen popsicles into the melted chocolate and quickly dredge them through the chopped peanuts. Keep the popsicles frozen in a ziplock bag until you are ready to serve them. BE SURE TO SAVE AND SHARE WITH ALL YOUR FRIENDS & FAMILY! Organization name: Down Syndrome Association Date: August 19, 2016 Time: 5 pm to 10pm Location: Blaze Pizza – Fresno 1089 E Shaw Ave, Fresno, CA 93710 5 Calendar of Events Grupo Latino Stay tuned for the next date! If you have questions about the group, please contact Grupo leader, Lourdes Arias at [email protected] Parent2Parent This (all ages) group offers emotional support, insight, and understanding to parents of children with any special needs. The group meets the first Wednesday of every month from 7-9 pm at the DSACC office. Meetings are led by Carolyn Tellalian, LCSW •July: NO MEETING •Wednesday, August 3, 2016 •Wednesday, September 7, 2016 Childcare provided with at least 5 days advance notice of meetingplease call us at 559.228.0411 South Valley 5 & Under Parent Education and Support Group Meets the first Thursday of the month from 10:00-11:30 am at the Liberty Center, 11535 Avenue 264 in Visalia, in partnership with Bright Start •July: NO MEETING •August: NO MEETING •September 1, 2016: Behavior Issues with Bethany Fresno Play Group This playgroup is for our families with kids 5 yrs and younger looking to connect with other parents in a casual play setting. Groups are held from 10-11:30 am the second Tuesday of every month at the DSACC office located at 1491 W Shaw Avenue Fresno, CA 93711. Families with kids slightly older than 5 yrs are always welcome to join as well. •July: NO MEETING •August 9, 2016: Free Play •September 13, 2016: TBA DSACC Self Advocate committee We are still looking for adults with Down syndrome to join our advocate Important 2016 dates to take note of... •Fresno Sib Shops ....................................................... July 16, 2016 •Visalia Sib Shops ...................................................October 1, 2016 •Family Festival ................................................... September 9, 2016 •DSACC Conference 2016.................................. September 17, 2016 •Relationship Training ........................................ September 22, 2016 •Fresno Creating A Plan: Footprints .......................September 22, 2016 •Visalia Creating A Plan: Footprints ..........................October 27, 2016 •Step Up for Down Syndrome.................................. October 22, 2016 Please note, dates may be subject to change committee. On the committee, they will learn public speaking skills, create their own "story" about their life to share with the community, social skills, and be a voice for members with Down syndrome. UPDATED! Meetings will be the third Tuesday of the month from 3-4pm at the DSACC office unless noted. •July: NO MEETING •August: NO MEETING •Tuesday, September 20, 2016: TBA If you are interested, please contact Jennifer at the DSACC office for more information or an application, 559.228.0411 or [email protected] Sib Shops Sib Shops acknowledge that being a sibling of a person with special needs is for some a good thing, others a not-so-good thing, and for manysomewhere in between. Participants are led through a variety of games and discussions to foster new friendships, knowledge & acceptance. •Saturday, July 16, 2016 • CVRC Fresno: 4615 N Marty Avenue Fresno, CA 93722 •Young Sibs (5-12 yrs) from 9-11:30 6 am •Teen Sibs (13+) from 1-3 pm...Ice cream Social Please sign up for the Sib Shops by contacting the DSACC office by Wednesday, July 13, 2016. Call 559.228.0411 or [email protected], or online at www.dsacc.org/events/ other. 2016 Sib Shops: October 1 @ CVRC Visalia Down Syndrome & Dementia Support Group CVRC in partnership with UCSF Fresno Alzheimer & Memory Center offers a support group for parents as caregivers or those directly caring for those with Down syndrome and dementia. All meetings held the third Wednesday of the month from 1-3 pm at UCSF Fresno Alzheimer & Memory Center: 6137 N Thesta Street, Suite 101 B Fresno, CA For more information, please call 559.227.4810 Relationship Training: Adult Session and Teen Session DSACC is excited to announce the next sessions of Relationship Training; one for teens (14-18yrs) and a second for adults (18 yrs & older) funded in part by a grant from the Fansler Foundation. People with developmental disabilities are the victims of sexual, physical and verbal abuse at a rate that is alarmingly higher than their peers without a developmental disability. A primary objective of this course is to empower our loved ones with the information and coping mechanisms to prevent becoming a victim of sexual abuse. Overall, the course will provide information about relationships; the boundaries and responsibilities associated with them in a teaching setting that will respect participant's different learning styles and abilities. The curriculum includes lessons about different kinds of feelings and behaviors that occur in each kind of relationship, as well as discussions about appropriate public and private talk. We'll explore how relationships grow and move from friendship to a partner/sweetheart, and learn ways to talk about feelings and solve problems when in a relationship. The class will also explore how to identify if your relationship has gone bad and examine ways to end a relationship and deal with your feelings in a healthy way. Family values and sensitivity are of utmost concern and if concerns or specific issues surface during the course, it will be important to share those with either of the course facilitators. Throughout this course, participants will have topics that are designed to promote and encourage family discussions. We hope that you will support this process and be an active participant! •Weekly sessions are scheduled to begin: Thursday, September 22, 2016 and will continue for 8 weeks (every Thursday) •Teens: 4:00-5:00 pm •Adults: 5:15-6:15 pm The course will be limited to ten spots. To register, please go online to www. dsacc.org/events or contact the office at 559-228-0411 or email info@ dsacc.org *Relationship training is FREE for participants Creating a Plan: Footprints for the Future (Fresno & Visalia) This program is aimed to help you plan for the future when you will not be around to take care of your child or loved one with Down syndrome or other disabilities. It is never too early to start planning and we are here to help make the process as painless as possible. There will be 4 sessions. Each will have a professional from the covered field to assist you with planning for the future. Please register for the series by contacting the DSACC office at 559.228.0411, [email protected] or register online at www.dsacc.org/ events/other. Registration is FREE! Fresno Sessions will begin Thursday, September 22, 2016 from 6:30-8:00 pm Sessions will be held on consecutive Thursdays from 6:30-8 pm at the Fresno Area: CVRC office: 4615 N Marty Avenue Fresno, CA 93722 •Thurs., September 22, 2016 from 6:30-8:00 pm, Session 1: Footprints for the Future workbook & intro •Thurs., September 29, Session 2: Wills & Special Needs Trusts •Thurs., October 6, Session 3: Social Security 101 & Impact of the ABLE Act Please note sessions are subject to change. Visalia Area: Visalia CVRC office: 5441 W Cypress Visalia, CA 93277 Sessions will be held on consecutive Thursdays from 6:30-8pm at the Visalia CVRC office: 5441 W Cypress Visalia, CA 93277 •Thurs., October 27, Session 1: Footprints for the Future workbook & intro •Thurs., November 3, Session 2: Wills & Special Needs Trusts •Thurs., November 10, Session 3: Social Security 101 & Impact of the 7 ABLE Act Please note sessions are subject to change. -----------------------------------------------------------------Do you have an event or program to share with DSACC readers? You can submit written information for approval to [email protected] by July 11, 2016 ------------------------------------------------------------------- DONATE TODAY! DSACC’s mission is to enhance the quality of life for all people whose lives are touched by Down syndrome. La misión de DSACC es de aumentar la calidad de la vida para todas las personas cuyas vidas son tocadas por síndrome de Down. I would like to assist DSACC support their mission. Please accept my donation of..../ Querría ayudar DSACC apoya su misión. Acepte por favor mi donativo de. ... $10 $25 $50 $100 $______________________ Name/Nombre Address/Domicilio City/State/Ciudad/Estado ZIP/Código Phone/Teléfono: E-mail Checks can be made payable to/ Los cheques pueden ser hechos pagaderos a: DSACC 1491 W. Shaw Avenue Fresno, CA 93711 Thank you for your support! Down Syndrome Association of Central California presents Tools for Success Conference 2016 Saturday, September 17, 2016 Registration $60 per person *Price includes light breakfast & lunch Double Tree by Hilton Fresno Convention Center 2233 Ventura Street Fresno, CA 93721 Registration/Check-in: 8:00-8:30 am Keynote/Welcome: 8:30 - 10:00 am Breakout(s) A: 10:15-11:45 am Youth A: Keys to Student Success in Inclusive Settings with Patti McVay Adult A: Relationships 101: Tools to deal with friendships, sexuality and adulthood with Susan Akbiyikian Health Track A: Aging & Alzheimer's: Warning signs, Diagnostic Process/Evaluation, Behavioral management techniques, & Research updates" with Dr. Loren I. Alzing, MD, Director/Neurologist UCSF Alzheimer & Memory Center, Marcy Johnson, PhD, UCSF Alzheimer & Memory Center, & Deby Hergenrader, Executive Director/Founder, Break the Barriers Lunch: 11:45- 1:15 pm: Panel Discussion with our speakers Breakout(s) B: 1:30-3:00 pm Youth B: Social Building Blocks: teaching your child about behaviors & relationships from the very beginning with Susan Akbiyikian Adult B: "Transitioning from School to Independence" with Patti McVay and Laurie Pachl Health Track B: Down syndrome health care guidelines and updates **Youth Track (geared towards children birth-12yrs with any disability) **Teen/Adult Track (geared towards persons13 yrs + with any disability) *If you would like to attend but cannot afford the registration, please contact DSACC Staff for available scholarship registrations. Register today at www.dsacc.org/events/conferences Or send check and completed registration to: DSACC at 1491 W Shaw Avenue Fresno, CA 93711 **Mailed registrations must be received by Friday, September 9, 2016 Thank you to our 2016 Sponsors Central Valley Regional Center * The Hillblom Foundation * Double Tree by Hilton 8 Tools for Success Conference continued... Patti McVay is an international speaker, trainer and author supporting students with Down Syndrome and other disabilities. Patti has spoken in Japan, Canada and South Africa, so also brings a world view of the great needs our children have for respect and equality. Patti recently retired as the Director of Education for the Linda Crnic Institute and Sie Center for Down Syndrome at the University of Colorado. Patti has been both a principal and special education director and together with Laurie Pachl, is providing support, training and resources to children and adults with Down syndrome and other disabilities, their families, schools and communities around the United States. Patti has been on the Colorado State Special Education Advisory Board and recently joined the board for Rocky Mountain Deaf School. Patti has been an educator all of her life and often speaks to the invaluable voice of parents in creating partnerships and success for their children. Patti & Laurie work tirelessly with families and educators to make lasting change for all kids. Laurie Pachl is a community leader making a difference in the lives of children and young people throughout the nation. Laurie not only partners with Patti, but serves on the Colorado Hands & Voices Board of Directors, is a State Winning Softball Coach, and is a supervisor for the Aurora Recreational Sports Park. Laurie also served as a member of the Colorado State Special Education Advisory Board and is a member of Exceptional Student Services Unit as a member of the Special Education Improvement Plan. As a member of the Nationally recognized Arapahoe Sheriff’s office Victim’s Advocate Team, Laurie also works to support individuals, such as those involved in school shootings or other crisis events, giving her very diverse and significant skills when it comes to promoting and supporting all kids, families and educators. Laurie as also authored articles and newsletters to encourage other parents and educators. Laurie brings a wealth of experience and information and the invaluable voice of a parent. Susan Akbiyikian is a local retired clinical psychologist, specializing in behavior for individuals with developmental issues over the last 25+ years. Akbiyikian has worked extensively over the last 10 years through DSACC and other local agencies, to provide support and education to teens and adults with developmental disabilities understand relationships, social interactions and how to understand and cope with their own emotions. Dr. Loren I. Alzing, MD, Director/Neurologist UCSF Alzheimer & Memory Center, Marcy Johnson, PhD, UCSF Alzheimer & Memory Center, & Deby Hergenrader, Executive Director/ Founder, Break the Barriers Conference Registration 2016 NAME(s): ADDRESS: PHONE: EMAIL: Check which you sessions will be attending: Breakout Session A: Youth A ____ Adult A _____ Health Track A ____ Breakout Session B: Youth B ____ Adult B _____ Health Track B ____ Enclosed is $__________ ($60 each) for _____# of participants Cash/Check/CC accepted (credit cards processed by contacting DSACC staff at 559.228.0411 Tell us about yourself, I am a... (circle all that apply) Parent/Caregiver Professional Medical Professional Educator Case Manager Service Provider Other: ________________________ How did you hear about the conference: Email 9 Newsletter Advertisement Friend Other __________ Time to lace up your sneakers and STEP UP for Down Syndrome! 10 Thank you to our 2016 Step Up Sponsors! Beacon Associates Commercial Asset Management Download Sponsor & Exhibitor info online @ www. dsacc.org/events/ Step_Up Show us your Down syndrome Pride! Imagine the PossABILITIES! Teams can compete for the title of “Largest Team” or “Biggest Fundraiser” in the following categories: Individual/family, School or Business. One team will be named “Most Spirited” at the event, selected by our guest emcee! We are looking for display boards and/or art pieces & photos of our loved ones with Down syndrome to feature in our PossABILITIES tent at Step Up. Displays should showcase the lives, talents, hobbies and abilities of our superstars... showing the world what our friends with Down syndrome are capable of ! The possABILITIES are endless! Category winners will be decided by the donations and registrations received in office by October 1, 2016. The first 4 Individual/Family Teams to raise over $2,000 by October 10, 2016 will win an iPad for their team captain! Please contact the DSACC office to let us know if you will be bringing something to showcase so we can plan space accordingly. If you need help creating or need inspiration, we are glad to help! 559.228.0411, [email protected] Step Up Fundraising Tips & Tricks by Sally Fernandes, 2015 Step Up Largest Fundraiser Step Up for Down Syndrome fundraising, where do I begin? Well if your family and friends are anything like ours, they think your child with Down syndrome is amazing, but also wish they could help you in some way. Some people help if you have sick children in the hospital, trying times at school, or just need a listening ear. But one thing everyone can do is donate! We were blessed in 2009 to join the Down syndrome community with the birth of our daughter Ava. We have helped raise funds for DSACC every year since, even the few years we were unable to attend Step Up for Down Syndrome, because we understand the importance of this organization’s support and presence. Thankfully, our family and friends also recognize this importance and regularly donate. We live in Tulare, so although we are not always able to gather a large team to spend the day in Fresno at Step Up, we can always count on continued support. Here’s a few things we do: • On the fundraising website I always give a summary of Ava’s health and school progress, and include activities she participates in. People love the annual update and a reminder of what awesome things people with Down syndrome can achieve! • I also include that the money donated stays local. People love knowing where their money goes, happy to give to an organization without a lot of overhead. • I share the fundraising website through e-mail and Facebook. This is the easiest way to reach the greatest number of people. I also post our fundraising progress, maybe once a week, as a reminder to some who haven’t donated yet and also thank those who have generously given. Over the years we have built a steady “team” of donors, and always seem to recruit a few new ones. I even have people ask me when they can donate before I have set up the fundraising page yet! Fall rolls around, they know it’s coming, and they are eager to give. People who don’t like to pay online will just give a check. Whether it’s $5 or $500, every donation is a gift they can feel good about. Here is our write-up from last year... Team Ava is ready to STEP UP!! Help us STEP UP and raise awareness for Down syndrome and raise funds for Down Syndrome Association of Central California. Here is an update on Ava... She just started 1st grade! She's returned to Mission Valley School with her wonderful teachers and friends. This past year she showed her first heifer (named Butter), took ballet and tap class, played Miracle League baseball, learned to swim with no floaties, and enjoyed a week of Vacation Bible School along with lots of other fun activities this summer. She had surgery to remove tonsils and adenoids with a surprisingly speedy recovery, and no more snoring!! She still has her g-tube to supplement fluids but we are using it less as she progresses to drink more by mouth. We thank God every day that our sick little baby has grown to become a strong and smart little girl. All funds raised stay in the Central Valley to support the programs, services and social events provided by the Down Syndrome Association of Central California. Programs and services include family support, education for professionals, members, and caregivers to create a community that accepts, includes and appreciates individuals with Down syndrome. We are thankful for your donation so that new and existing families blessed with an extra chromosome can benefit from these programs. With much love from the Fernandes family, 11 Josh, Sally, Luke, Gianna, & Ava Creating “Fort Knox” – The Right Amount of Security for Your Child By: A loving mother of a cutie with Down syndrome Often times, when describing characteristics of an individual with special needs you may hear the terms runner or eloper. When we first had our son, we were not familiar with these terms in the context they were being used. What exactly do these terms mean? ................................ Eloper: (of a person with a mental disorder or cognitive impairment) to leave or run away from a safe area or safe premises. Runner: a person that runs ................................ Today our son is three years old and until a few months ago I would not have classified him as either of these. Sure, he likes to walk up ahead of us, but always is looking back to see where we are. He may run for the chase, thinking he’s funny, but never to really take off from us. This has since changed… One early morning in March, I woke up to get him ready for school, as I do every day, around 6:30 am. On this particular morning when I went into his room to wake him, he was not there. Slightly panicked at this point and thinking something was not right, I quickly checked the other rooms in our house looking for him. Maybe he decided to sleep in sister’s room, or snuggle up on the couch in the middle of the night. I even checked the bathtubs, making sure he wasn’t hiding somewhere. He was nowhere to be found! As I came up to our front door I saw that the child lock on the doorknob had been broken off and the dead bolt was turned to the unlocked position. In full panic, I ran outside screaming his name, checking the neighbors’ front porches, while dialing 911. Within a minute of calling them, I had found out that our son was safe, in CPS custody and they would be sending officers to question us. My husband and I were so relieved he was safe and all right; this was all that truly mattered! After a very long day, we did get our son safely back in our arms. CPS deemed that we were a safe house and had not put our child in danger; it was a true accident. Things we found out that day: he had gotten out around 3:30 in the morning, he had closed the front door behind him so when the police were looking for an open door early in the morning to see where he might belong, they couldn’t find the house. Our neighbor a few doors down who was up early had been questioned by police with “Do you know if any of your neighbors have a little boy with Down syndrome?” His response was “No.” He knew we had a little boy, but did not realize he had Down syndrome. CPS is an agency I never want to have visit us again, thankfully our son was not alarmed by any of the events that took place that day. I am not writing our story out to 12 scare any of you reading this. The reason I am sharing what happened to us is to help others in our community become better prepared so that this never happens to another family. What we have taken away from our experience: 1. Even though you might not think your child is old enough, tall enough, or able to do something, be prepared before they learns how to do it. For us unfortunately, the time our son was determined enough to figure out his escape, was the time he was successful and we were sleeping. Secure your house, even if you think it’s “too early, or not necessary yet.” Better to be ahead of the game then a little too late. 2. Introduce your children to your neighbors up and down your street and make sure your neighbors know if your child has a diagnosis and what it is. We now have introduced our son to all our neighbors as, “This is our son ______. He happens to have Down syndrome. I do not usually introduce him with his diagnosis attached to it, but in case the neighbors are ever asked if they know him, and where he lives.” 3. Our house is “Fort Knox” – fully secured as of that same evening. Below are a range of safety tools you and yours may want to look into to secure your home and child. Five Affordable Safety Tools CONTINUED FROM P. 12 1) Door/Window Alarms: These battery-operated alarms are super easy to install and can be found at many retail outlets including Home Depot, Walmart and Radio Shack. It also can be found on Amazon in a 2-pack for $9.99. 2) Shoe ID Tags: These are especially good for our kids who can’t tolerate wearing an ID bracelet. They’re water-resistant and attach easily to shoes with Velcro. Using a Sharpie, you can write your emergency contact information and medical conditions onto the inside of the tags. •ifIneedhelp.org - $10-15/shoe tag •smartkidsid.com - $9.95/shoe tag •roadid.com - $19.99/each 3) Stop Signs: A visual prompt that makes your child stop – or even pause for a moment - can be critical to preventing a tragedy. A Stop Sign is included for you to make copies and put up around your house where you may want your child to STOP and not continue. 4) Guardian Lock: The Guardian Lock is a portable lock you can use on any exterior door – and you can take it with you when you travel. Regular doors and sliding glass door locks are available too. Sold at Walmart $17.60 5) Temporary Tattoos: Lost and Found temporary tattoos are great for school field trips, vacations or an outing to the park, zoo, or even the mall. The tattoos last for several days. safetytat.com – Lasts for 2 weeks - $10.99/6 pack & $20.99/18 pack Higher Cost Safety Tools or ones with Monthly Fees 1) Alarmed tracking device – Guardian Angel for 2 Kid’s Tracker, Child Locator Alarm This is a take as your on-the-go proximity alarm. No monthly servicing, but not GPS tracked. $54.99/Amazon 2) Personal GPS tracking devices with monitoring – www.safewise. com lists the pros and cons of 10 devices. They all have an up front purchase cost and some also have a monthly monitoring fee that ranges from $5 - $30 per month 3) Home alarm system with/ without monitoring – There are many companies you can chose to go with. They all have up front installation costs, depending on your individual house needs, but many have promotional deals at 13 different times. You also can have the alarm monitored for a monthly cost that usually ranges between $30-$60/month depending on what service you would like. Companies include, but are not limited to: ADT, Frontpoint, Vivint, LifeShield, Protect America, and the list goes on. I received a “Tool Kit” for caregiver’s and parents with special needs children from the Fresno Police Department’s Missing Person Unit. It is geared/ written towards children with autism, but is very applicable to all with a loved one with special needs. If you would like a copy of the “Tool Kit” emailed to you please email the DSACC office at [email protected] and one will be forwarded to you. If this information helps at least one other family then sharing my story has been worth it! Signed – A loving mother of a cutie with Down syndrome Sources 1. Dictionary.com 2. Big Red Safety Box; National Autism Association Calendario de eventos Junta del Grupo Latino Esté atento a nuestra siguiente cita. Si tiene preguntas acerca del grupo, por favor contacte a la Líder del Grupo, Lourdes Arias al correo electrónico [email protected] De Padre a Padre Este es un grupo para todas (las edades) que ofrece apoyo emocional, comprehensivo y entendimiento a padres de niños con necesidades especiales. El grupo se reunirá el primer miércoles de cada mes de 7-9 pm en la oficina de DSACC. Las juntas serán presentadas por Carolyn Tellalian, LCSW y oradores ocasionales. •Julio: No hay reunión •Miércoles 3 de Agosto del 2016 •Miércoles 7 de Septiembre del 2016 Habrá cuidado de niños si nos deja saber con 5dias de anticipo antes de la junta – favor de llamar a 559.228.0411 Grupo de Juego de Fresno Este grupo de juego es para nuestras familias con niños de 5 años y más jóvenes que buscan conectarse con otros padres en un ambiente de juego casual. Los grupos se celebrará del 10-11: 30 am el segundo martes de cada mes en la oficina DSACC situado en 1,491 W Shaw Avenida Fresno , CA 93711 •Julio: No hay reunión •9 de Agosto del 2016: Juego Libre •13 de Septiembre del 2016 Sur del Valle menores d 5 Grupo Educacional de Apoyo para Padres Juntas el primer Jueves de cada mes de 10:00 a 11:30am en el Liberty Center: 11535 Avenue 264 en Visalia, en Sociedad con Bright Start. Cada reunión ofrece diversión y actividades informativas, además de pláticas con expertos en temas relevantes. •Julio: No hay reunión •Agosto: No hay reunión •1 de Septiembre: Temas sobre La Conducta con Bethany Comité de Consejería de DSACC Estamos todavía buscando adultos con Síndrome de Down que quieran unirse a nuestro comité de consejería. En el comité, aprenderán habilidades para hablar en público, a crear su propia historia sobre su vida, para compartirla con la comunidad, habilidades sociales, y ser una voz para ser miembros con Síndrome de Down. ACTUALIZADO, Las reuniones se llevarán a cabo el tercer martes de cada mes de 3:00 a 4:00pm en la oficina de DSACC, cambios con previo aviso. •Julio: No hay reunión •Agosto: No hay reunión •Martes 20 de Septiembre del 2016: TBA Si usted está interesado, por favor contacte a Jennifer en la oficina de DSACC para más información al teléfono 559.228.0411 o solicite una aplicación a [email protected] Sib Shops Sib Shops sabiendo que ser hermano de una persona con necesidades especiales, es algo muy bueno, y a veces no tan bueno, por eso y otras cosas más. Los participantes serán guiados por medio de diversos juegos y pláticas para fomentar nuevas amistades, conocimiento y aceptación. •Sábado 16 de Julio del 2016 •CVRC de Fresno: 4615 N. Marty Ave. Fresno, CA 93722 •Hermanos menores (de 5 a 12 años) de 9:00 a 11:30am •Hermanos (13 años en adelante) de 1:00 a 3:00pm… Convivio Social con nieve. Por favor regístrese para asistir al Sib Shops, llamando a la oficina de DSACC antes del 13 de Julio del 14 2016, al teléfono 559-228-0411 o al correo electrónico [email protected] o en la página de internet www.dsacc. org/eents/other •Sib Shops 2016: 1 de Octubre en el CVRC de Visalia Grupo de Apoyo de Síndrome de Down y Demencia CVRC en colaboración con la UCSF Fresno Centro de Alzheimer y Memoria ofrece un grupo de apoyo para los padres como cuidadores o personas que cuidan directamente a personas con síndrome de Down y demencia. Todas las reuniones se llevan a cabo el Tercer Miércoles de cada mes de 1-3 pm en la UCSF Fresno Centro de Alzheimer y Memoria: 6137 N Thesta Street, Suite 101 B Fresno, CA Para obtener más información, por favor llame al 559.227.4810 Inviten a todos sus seres queridos a desayunar! Coman y Apoyen a DSACC Curso Sobre Relaciones: Sesión para Adultos y Sesión para Adolescentes DSACC está feliz de anunciar la siguiente sesión del Curso sobre Relaciones; la primera sesión es para adolescentes (de 14 a 18años) y la segunda para adultos (de 18 en adelante) creado en parte por un fondo otorgado por la fundación Fansler. Personas con Discapacidad de Desarrollo mental son víctimas de abuso sexual, físico y abuso verbal en un promedio que es alarmante, máxime que sus compañeros que no tienen alguna discapacidad de desarrollo mental. El objetivo primario de este curso es darles a nuestros seres queridos toda la información y que reconozcan todos los mecanismos para revenir convertirse en víctima de abuso sexual. Sobre todo, el curso proveerá información sobre relaciones; los límites y las responsabilidades asociadas a las relaciones, enseñando en una forma que respetara las diferentes formas, estilos y habilidades de aprendizaje de los participantes. El itinerario del curso incluye diferentes lecciones acerca de diversas formas de sentimientos y conductas que ocurren en cada tipo de relación, así como discusiones sobre pláticas apropiadas en lugares públicos o en lugares privados. Se explicará cómo crecen las relaciones y como pasan de ser una amistad a un compañero o enamorado, además aprender las formas de platicar sobre los sentimientos, y como resolver problemas cuando están en una relación. El curso también explorará como identificar si tu relación se ha deteriorado y examinaremos formas de terminar una relación y lidiar con tus sentimientos en una forma sana. Los valores familiares y la sensibilidad de los temas que se discutirán en el curso están fuera de los temas específicos del curso, pero será importante que compartan sus preocupaciones con los exponentes del curso. Durante este curso, los participantes se enfrentarán a temas que han sido diseñados para promover y encausar platicas en familia. Esperamos que apoye este proceso y que sea un participante activo. •Los cursos semanales están agendados para iniciar el 22 de Septiembre del 2016 y continuarán por 8 semanas (cada jueves). •Adolescentes: de 4:00 a 5:00pm •Adultos: de 5:15 a 6:15pm •El curso está limitado a 10 lugares. Para registrarse, por favor visite nuestra página de internet www.dsacc.org/events o llame a la oficina al 559-228-0411 o mande un correo electrónico a [email protected] El Curso de Relaciones es GRATIS para los participantes Creando un plan: Pasos hacia el futuro (Fresno y Visalia) Las Sesiones en Fresno comenzaran el jueves 22 de Septiembre del 2016 de 6:30 a 8:00pm Las sesiones se llevaran a cabo consecutivamente cada Jueves de 6:30 a 8:00pm en la oficina del CVRC de Fresno ubicada en: 4615 N. Marty Ave. Fresno, CA 93722 •Sesión 1, el 22 de Septiembre: Pasos para el Futuro, Introducción y Libro de Trabajo •Sesión 2, el 29 de Septiembre: Testamento y Fideicomiso para personas con necesidades especiales. •Sesión 3, el 3 de Octubre: Seguro Social 101 y el Impacto de la Ley ABLE Nota: las sesiones están sujetas a cambios. Las Sesiones en Visalia comenzaran el jueves 27 de Octubre del 2016 de 6:30 a 8:00 pm Las sesiones se llevaran a cabo consecutivamente cada Jueves de 6:30 a 8:00pm en la oficina del CVRC de Visalia ubicada en: 5441 W Cypress Visalia, CA 93277 •Sesión 1, el 27 de Octubre: Pasos para el Futuro, Introducción y Libro de Trabajo •Sesión 2, el 3 de Noviembre: Testamento y Fideicomiso para personas con necesidades especiales. •Sesión 3, el 10 de Noviembre: Seguro Social 101 y el Impacto de la Ley ABLE Nota: las sesiones están sujetas a cambios. Regístrese en línea en www.dsacc. org/events/other o llame a la oficina de DSACC al teléfono 559-228-0411 ¡APARTA LA FECHA! Festival Familiar de Súper Héroes Estaremos celebrando a todos nuestros súper héroes favoritos en el Festival Familiar. • Viernes 9 de Septiembre del 2016, de 6:00 a 9:00pm en Well Church de Fig Garden Únase a una Súper Tarde llena de Juegos, Comida, Caritas Pintadas, Brincolines y mucho más! Puede usar el disfraz de su Súper Héroe Favorito! El costo es de 1 dólar por persona 15 Niños menores de 2 años entran GRATIS Por favor reserve en línea en www. dsacc.org/events/family_fesival o llame a la oficina de DSACC al 559228-0411 Habrá boletos disponibles en la entrada -----------------------------------------------------------------¿Tienes un evento o algún programa para compartir con los lectores de DSACC? Puedes mandar la información por escrito, para ser aprobado a [email protected] antes del 31 de Mayo del 2016 -----------------------------------------------------------------DSACC estará cerrada El Lunes 4 de Julio del 2016, con motivo del 4 de Julio Nueva Tarjeta del horario de reunión En una reciente junta de la Mesa Directiva, se adoptó y se aprobó un nuevo horario de juntas. Por favor anote la nueva agenda de juntas de la Mesa Directiva que será efectiva inmediatamente. Ahora las juntas se llevarán a cabo en Enero, Marzo, Abril, Agosto, Septiembre y Diciembre cada año. Las Juntas se anunciarán al final de cada Junta de la Mesa Directiva, a través de correspondencia escrita o correspondencia oral. Las Juntas de la Mesa Directiva están abiertas al público, si está usted interesado en venir y proveer puntos interesantes para la dirección de la organización. Asegúrese de checar la página 2 de nuestro boletín informativo regularmente, para checar las fechas de las juntas. 16 Thank you to our 2016 Step Up Sponsors! Beacon Associates Commercial Asset Management Demuestra tu orgullo por el Síndrome de Down Los equipos pueden competir por el título de “El equipo más grande” o “El fondo más grande recaudado” en las siguientes categorías: individual/ familia, Escuela o Negocio. Un equipo será nombrado “El más energético” en el evento, seleccionado por nuestro maestro de ceremonia invitado. Los ganadores de cada categoría serán elegidos de acuerdo a las donaciones y registraciones recibidas en la oficina antes del 1 de Octubre el 2016. Los primeros 4 equipos individuales/o de Familias en recaudar $2,000 antes del 10 de Octubre del 2016, ganarán un Ipad para el capitán del equipo. Download Sponsor & Exhibitor info online @ www. dsacc.org/events/ Step_Up La Carpa PossHABILIDADES Estamos buscando piezas de arte para mostrar y fotografías de nuestros seres queridos con Síndrome de Down para ser presentadas en nuestra carpa de Poss Habilidades en LA CAMINATA. Queremos mostrar las vidas, los talentos, los pasatiempos y habilidades de nuestras súper estrellas… mostrando al mundo de lo que son capaces nuestros amigos con síndrome de Down. Las pos habilidades son interminables. Por favor contacta la oficina de DSACC para hacernos saber si a usted le gustaría presentar algo para la exhibición, así podemos planear el espacio para todos. Si usted necesita ayuda para crear algo o necesita inspiración, nos encantaría ayudar. 559-2280411, [email protected] La Asociación de Síndrome de Down del Centro de California Presenta: Herramientas Para Triunfar Sábado 17 de septiembre de 2016 en el Double Tree Hotel in Downtown Fresno 2233 Ventura Street Fresno, CA 93721 Registración $60 por persona *El costo incluye un desayuno ligero y la comida Si está interesado en asistir, pero no puede pagar la registración, por favor llame a la oficina de DSACC para la condonación de dicho pago para la registración. Estamos contentos de invitarlo a nuestra conferencia de un día, para los papás, proveedores de cuidado, educadores, proveedores de salud, trabajadores sociales, y a los profesionistas. Se les dará información acerca de temas de actualidad, y temas relacionados que impactan las necesidades especiales en nuestra comunidad. Los participantes se llevarán consigo herramientas, experiencia, así como una mejor comprensión del panorama de las discapacidades a largo plazo, para ayudar a mejorar su conocimiento, así como poder ser de ayuda para los demás. Oradores Principales: Patti Mc Vay y Lauri Pachl Oradores Invitados: Susan Akbiyikian, Psicóloga Clínica retirada; Dr. Loren I. Alzing, Ph.D, Directora y Neuróloga de UCSF Alzheimer & Memory Center; Marcy Johnson – Administradora de USCF Alzheimer & Memory Center; Deby Hergenrader – Directora Ejecutiva y Fundadora de Break the Barriers, Inc. 17 Registro/Registrarse: 8:00-8:30 am La conferencia ofrece tres partes. Una parte se enfoca en los jóvenes (De recién nacido a los 12 años), adolescentes y adultos, y por último una parte exclusiva para la salud de las personas con síndrome de Down. Parte del receso para comer será para hacer comentarios con los oradores invitados. La parte de los niños (gira alrededor de los recién nacidos hasta la edad de 12 años, así como para cualquier discapacidad) Las sesiones cubrirán: La clave para que los estudiantes con un ambiente de inclusión, tengan éxito. Con Patti McVay y Lauri Pachl. Bloques de Construcción Social. Se la ensenará a sus hijos acerca de “La Conducta y Sociabilidad desde el comienzo”, con Susan Akbiyikian. La Parte para los Adolescente y Adultos (Gira alrededor de los 13 en adelante, además de cualquier discapacidad). Las sesiones cubrirán: “La transición de la escuela a su independencia” con Patti McVay y Lauri Pachl “Las Relaciones 101”: Herramientas para saber llevar una amistad, la sexualidad y la mayoría de edad” con Susan Akbiyikian La pista para la salud de las personas con síndrome de Down: Las sesiones cubrían: los cambios actuales en “El cuidado de la salud del síndrome de Down y el crecimiento en las gráficas” “El envejecimiento y el Alzheimer” Señales de advertencia, diagnóstico, Proceso/Evaluación, técnicas del manejo o control de la conducta y las investigaciones recientes con la Dr. Loren I. Alzing, y con la Dra. Marcy Johnson, PhD Y con Deby Hergenrader. Bienvenido: 8:30 - 10:00 am Desbloqueos A: 10:15-11:45 am Juventud A: La clave para que los estudiantes con un ambiente de inclusión, tengan éxito con Patti McVay Adulto A: Las Relaciones 101”: Herramientas para saber llevar una amistad, la sexualidad y la mayoría de edad” con Susan Akbiyikian Pista de la salud A: “El envejecimiento y el Alzheimer” Señales de advertencia, diagnóstico, Proceso/Evaluación, técnicas del manejo o control de la conducta y las investigaciones recientes con la Dr. Loren I. Alzing, y con la Dra. Marcy Johnson, PhD Y con Deby Hergenrader. Lunch: 11:45- 1:15 pm: Desbloqueos B: 1:30-3:00 pm Juventud B: Bloques de Construcción Social. Se la ensenará a sus hijos acerca de “La Conducta y Sociabilidad desde el comienzo”, con Susan Akbiyikian. Adulto B: "Transitioning from School to Independence" with Patti McVay and Laurie Pachl Pista de la salud B: los cambios actuales en “El cuidado de la salud del síndrome de Down y el crecimiento en las gráficas” Registro 2016 Nombre(s): DIRECCIÓN: TELÉFONO: EMAIL: Comprobar qué sesiones que va a asistir Sesión A: Juventud A ____ Adulto A _____ Pista de salud A ____ Sesión B: Juventud A ____ Adulto A _____ Pista de salud A ____ Adjunto$__________ ($60 cada) para _____# of participantes Cash/Check/CC accepted (Poner en contacto precesión con tarjetas de crédito DSACC staff at 559.228.0411 Cuéntanos acerca de tí.. (círculo todo lo que corresponda) Padre / cuidador Profesional Profesional médico Educador Administrador de casos Proveedor de servicio Otro: ________________________ ¿Cómo se entero de la conferencia? __________________________________________________________ Gracias a nuestros patrocinadores 18 Central Valley Regional Center * The Hillblom Foundation * Double Tree by Hilton Organization name: Down Syndrome Association Date: 19 de Agosto de 2016 Time: 5 pm to 10pm Location: Blaze Pizza – Fresno 1089 E Shaw Ave, Fresno, CA 93710 19 1491 W. Shaw Avenue Fresno, CA 93711 Change Service Requested What's Inside Step Up for Down Syndrome Tools for Success Conference Family Festival of Superheroes Creating a Plan: Footprints for the Future Relationship Training Sib Shops & more! Join our community ... On Facebook.com/dsacc On Instagram @dsacentralca 20 Online @ www.dsacc.org