January/February 2012 ~ Volume 11, No. 1 In this issue... DSACC Updates... P. 2 Happy New Year's! D.A.D.S... P. 3 Birthdays... P. 4 Welcome to Our World... P. 4 Announcements... P. 5 Donation Page Calendar Link Playgroup Parents Reaching Out Let it Shine ~ Let It Shine Diamonds in the Rough Sweetheart Luncheon & Fashion Show Saturday, February 11, 2012 10:30 am Check-in, Social Hour, Silent Auction 11:30 am Fashion Show & Lunch International Catering Company 4277 N. West Ave. Fresno, CA 93705 Thank You s... P. 6-7 Holiday Social Pictures Step Up for Down Syndrome Pictures Calendar of Events... P. 8 Articulos en Español... P. 9-10 Spotlight... P. 11 Meet Tracy James! Tickets are $40 per person ($20 for individuals with Down syndrome) Tickets may be purchased at the DSACC office or on our website, www.dsacc.org Please purchase your tickets by Friday, February 3, 2012 Sweetheart Sponsorship Levels Heart of Gold Sponsorship - $1000 Sponsors receive prominent signage at the event, mention in the program, table recognition and publicity in the DSACC newsletter. Heart of Gold sponsors may also choose one representative to walk in the fashion show and will receive 10 tickets to the event. True Blue Sponsorship - $500 Sponsors receive mention in the program, table recognition and mention in the DSACC newsletter. True blue sponsors will receive 4 tickets to the event. Don't forget to submit your nominations for Educator of the Year and Healthcare Provider of the Year. Nomination forms can be found on the DSACC website, www.dsacc.org. Please submit your nominations in no later than Friday, January 13, 2012. Please call the office if you are interested in volunteering at Sweetheart Luncheon, or would like to help by donating a silent auction basket. 559-228-0411, or E-mail OM@dsacc.org
DSACC Updates Executive Director: Larry G. Gray Office Manager: Danielle H. Carlson The Extra is funded in part by The Fansler Foundation. Newsletter Editor: Danielle H. Carlson OM@dsacc.org Spanish Language Editor: Lourdes Arias Lourdes@dsacc.org Contact Information: Down Syndrome Association of Central California 4277 W. Richert Ave. Suite 102 Fresno, CA 93722 Phone: (559) 228-0411 Fax: (559) 228-0414 E-mail: info@dsacc.org Website: www.dsacc.org 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. 2012 Officers and Board of Directors Lourdes Arias - President/Treasurer Kelly Cahill - Secretary Members At Large Jeremy Bishel Paris Boone Manuel Cortes Tracy James Tony Phillips Brad Spuhler Steven Ueltzen Jennifer Whiting ***Office Hours*** Monday thru Friday 9:00 a.m. to 2:00 p.m. Also open for scheduled events, and by appointment Happy New Year's! As we start of this 2012 year, let's take a look at what we have in store for you! On Saturday, January 21, we will be hosting our first Parents Reaching Out meeting to be held at the Down Syndrome Association of Central California office from 10am to 3pm. Parents Reaching Out members help facilitate our new parent program. Parents of children with Down syndrome have a unique and invaluable perspective that qualifies them to support other parents in a way that no one else can. In this role they can offer support and solutions to parents who have recently been given the diagnosis of Down syndrome or advocate for the parents' rights. They can also bring important information to those who serve the Down syndrome community such as social workers, physicians, nurses and teachers. With a small amount of training to refine communication skills, the DSACC Parents Reaching Out group can be a powerful force for good in the community at large. If you are interested in participating in this program, please call the office, 559-228-0411. Please see page 5 for more information about the meeting. Sweetheart Luncheon and Fashion Show is on Saturday, February 11 at International Catering Company from 10:30am to 1:30pm. Be sure to purchase your tickets early! You will not want to miss out on this oneof-a-kind fashion show. For more information, please see the front page. As you may recall, DSACC had planned on going paperless in January for our newsletter. We have received some concerns about this transition. We would like your input. Are you interested in receiving the newsletter via E-mail and/or through the DSACC website, or would you prefer receiving the newsletter the oldfashioned way - through the mail. We want to do what is in the best interest of our members. Please E-mail your suggestions to OM@dsacc.org. We appreciate your support in this endeavor! 2
D.A.D.S. Older dad. keeping the 'dad' tradition going or improving my skill sets? What is a 'dad' at any age? - Written by Ed James (Tracy James's dad) When Tracy was born, I was in my 40's, even then we thought 'the new 30s'! Like other new dads, I was still working, being the 'traditional' dad. Still working, running a large organization, I tried to help when I was home. There was no parental leave then. But, this time around, I knew how important it was going to be to be there to participate in Tracy's life, and to lend support and encouragement for both Tracy and her mom. I had to be there to help meet the needs of this adorable child, every step of the way, forever. With unused sick leave and vacation days, I took the time to help with night feedings, changing diapers, and rocking this new baby. Like other new babies, Tracy was going to also need me in her life, and I needed to be a part of her life. We were destined to be a great team! And, this time around, I was going to double my efforts to help meet the needs and challenges of this child with Down syndrome. As an older, more 'experienced' dad, I called upon my past 'dad' experiences, and found I was less anxious, more relaxed, and more patient. I marveled at this new child as she demanded and automatically assumed her rightful place in our lives. Ed and Tracy James at the 2011 Family Fiesta While I quickly learned that my attempts to 're-organize' the nursery, teach everyone the correct way to load the dishwasher, sterilize bottles, or wash and fold tiny clothes were not as appreciated as I thought they should be, I learned that there were other chores that needed to be done, under direction of course. As an older dad, I learned that patience and hope was enduring and welcomed. My listening skills had improved; I was less cranky when small toys were left about. And, rather than being cross at the mess, I laughed more often when peas went flying across the table as Tracy insisted that she feed herself. Wow, fatherhood had changed since the last time around, or did I just imagine what I might have done differently as a 'new' dad? Dads and grandfathers, biological or adoptive, of any age, are important to any child. We come as protectors, and caregivers, and teachers of many things. I would like to think 'dads at any age' help complete the circle of any child's life, no matter the challenges faced by the child. As we began this journey, Tracy was going to have an older, more experienced 'special' dad in her life, the 'older' dad. If you would like to submit a D.A.D.S. article, please E-mail OM@dsacc.org 3
Birthdays January 2012 Birthday Celebrations * February 2012 Birthday Celebrations If your birthday is not listed here, please call us and let us know. We will publish missed birthdays. Charlie Allshouse Crystal Alvarez Abraham Benitez Lauren Bergquist Julian Carrillo Jacob Chavez Anna Davis Elijah Michael De La Cerda Logan Dewey Isabella Meza Audrey Gutierrez Ethan Hunter Jennifer Johnson Christian Sa-Riah Romo Fatima Macias Alexandria Maggio Jimmy McMillan Kensy Molina- Monges Jan P. Mona Scott "Scottie" Nerland Adrian Pedraza Anna Predmore Guadalupe Ramos Diego Cisneros Aaron Ray Jaime Rayo Jr. Carlos Williams Recinos Gerardo Reynoso Monica Ruano Javier Sanchez Phillip Sims E.J. Smith Aliyah Isabella Tovar Andrea "Andy" Varela Jack Welsh Aleksander Wickstrom Mia Figueroa Ximena Lopez-Ballin Salvador Albino Melissa Marie Alvarez Lilianna Bourgeois Angel Jeff Gisele Cody Katie Rose Cosby Charis Crisco Elijah Johnson Ava Fernandes Adriana Romo Uma Kirby Kelly Flepper Micah McDaniel Jason Mullis Richard "Ricky" Peterson Jose Piceno Armando Rosales, Jr. Dante David Rossette Dante David Rossette Loriann Sanchez Angel Torres Santiago Matthew Schaak Mario Silva Jr. Stephanie Cruz Mike Wright Steven Sztukowksi Cristopher Vasquez Brenda Anderson Paola Beatriz Garcia Julio Ramirez Max Vargas Welcome To Our World... Everett Dylan Spuhler! Our little Everett was born July 7th, 2011; he was 3 days late. The only reason we went to the hospital that day was because Everett hadn t been very active and we wanted to make sure he was doing OK. A few hours later we were having an emergency c-section because his heat rate was dropping. He didn t make a sound when they took him out. Kathleen didn t even get to see him before they rushed him off to the NICU. After a few hours, a doctor came up to tell us Everett needed to be rushed to the Children s Hospital to be on a stronger breathing machine. He also told us Everett had some unique features. The way his nose looked, how his eyes were a little too far apart, how his ears were a little low. He wouldn t come out and say it but we knew what it meant, Down syndrome. It took 2 weeks of breathing machines and 4 more weeks working on feeding before we finally got to bring him home. What we ve really found amazing though since having Everett is the amount of support there is from the Down syndrome community. The future seemed somewhat bleak before we started meeting other parents, going to groups and events and realizing that we re actually going to have a pretty exciting adventure ahead of us. We can t wait to see what each new day brings. Bradley, Kathleen & Everett Spuhler 4
Announcements Check out our donation button on our website - www.dsacc.org! Click the donate button to make a one time donation or become a VIP donor and give monthly! To learn more about giving monthly, please call the DSACC office, 559-228-0411 Let it Shine~Let it Shine! Calendar Link Purchase your calendar today! You can customize your calendar to begin at your month of choice. And, remember, proceeds from each calendar purchased will be donated to Down Syndrome Association of Central California. Just go to: www.calendarlink.org/dsacc and choose selected DSACC pictures or upload your own personal pictures to create your very own calendar! Spend a night with the sparkling Diamonds in the Rough performers! Mark your calendar now for Friday, February 24, 2012 at 6:00 p.m. for the 3rd Annual Diamonds in the Rough Concert, Born to Shine at Fresno s historic Tower Theatre. Treat yourself to a night of foot tapping music that will have you singing along with your favorite tunes as you join this award-winning concert band. Diamonds in the Rough will Take you There, belting out classic rock favorites like Johnny B Good and Mustang Sally. Stroll down memory lane as the band croons the rhythmic melodies of golden oldies including their famous renditions of Under the Boardwalk and My Girl. Diamonds in the Rough is comprised of award winning musicians who sing and perform right alongside the stunningly talented Diamond Learning Center Students; raising awareness and empowering inclusion for individuals with physical and or developmental disabilities. (Continued on Page 11) Play Group Join us on Saturday, January 14, 2012 for DSACC Play Group! Location: Annie Chaney's Home (Please call the DSACC office for directions) Time: 10am* to Noon For more information, please call 228-0411. *please note the time change from previous playgroup sessions Parents Reaching Out (PRO) Training January 21, 2012 10 am until 3 pm DSACC office; no childcare; lunch will be served. Trainers will be selected DSACC board members and staff. We are having our first training for DSACC PRO s. You must attend PRO training if you visit families who have a new baby with Down syndrome or would like to volunteer in that area. This training is mandatory for individuals who wish to continue to visit new families after they have been referred to DSACC from a healthcare professional. During the day, we will review the basics for visiting a new family, DSACC record keeping requirements, liability issues that may arise from mishandling this responsibility and how to avoid problems, and different techniques for telling your story. It promises to be a fun, lively, long awaited for training. Please call the office to RSVP no later than Friday, January 13, 2012 at 559-228-0411. 5
Thank You The families and friends of Down Syndrome Association of Central California would like to thank you for your support and faith in our mission to enhance the quality of life for all people whose lives are touched by Down syndrome. Many thanks to......our November and December volunteers: Kathy Monty and Sally Fernandes (Third Thursday), Carlie McCorvey from Mended Little Hearts (November Third Thursday Guest Speaker) and Jane Feist, Mike Feist, Nina Baker, Steven Sanchez, Kelli Mosher, Stephanie Rusmin, Michelle Rusmin, Alli Omandam and Ken Miller (Holiday Social Volunteers). 2011 Holiday Social Pictures 6
2011 Step Up for Down Syndrome Pictures Photo Credit: Snapshot Media and Steve Sanchez For more 2011 Step Up for Down Syndrome pictures, please check out our Facebook Page - Down Syndrome Association of Central California. 7
Calendar of Events DSACC s mission is to enhance the quality of life for all people whose lives are touched by Down syndrome. For more information or questions, Call the DSACC Office 559.228.0411 Third Thursday Meetings are held at Visalia Nazarene Church, 10am to Noon January 19, 2012: Guest Speaker: Jamie McCurdy - Speech Language Pathologist and Feeding Specialist February 16, 2012: Guest Speaker: Kristi Spaite - Vision Specialist March 15, 2012: Guest Speaker: Sandra and Hope Gonzalez - Mother and Daughter Duo Playgroup Saturday, January 14, 2012 10am to Noon Annie Chaney's Home Please call the DSACC office for directions Board Meetings are held the 3rd Wednesday of the month, 6pm, DSACC Office. D.A.D.S. Meetings held on 2nd Mondays at 6pm Round Table Pizza on Willow and Herndon UPCOMING MEETINGS: January 9 and February 13 Parents Reaching Out Training Saturday, January 21, 2012 10am to 3pm DSACC Office Sweetheart Luncheon and Fashion Show Saturday, February 11, 2012 10:30am to 1:30pm International Catering Company 10:30am - Check-in, Social Hour, Silent Auction 11:30am - Fashion Show and Lunch Tickets are $40 per person Deadline to purchase tickets is February 3, 2012 I would like to assist DSACC support their mission. Please accept my donation of... Name Address $10 $25 $50 City/State ZIP Phone E-mail $100 Photo by: Jennifer Wycoff $ Checks can be made payable to: DSACC 4277 W. Richert Ave., Suite 102 Fresno, CA 93722 Thank you for your support! 8
Eventos de dsacc Llame a la Oficina de DSACC Si Tiene Preguntas, 559.228.0411 Tercer Jueves Las juntas son en la Iglesia Nazarene de Visalia, 10am al Medio día Enero 19, 2012: Orador: Jamie McLCurdy - Terapeuta de Lenguaje y Especialista en Alimentación Febrero 16, 2012: Orador: Kristi Spaite - Especialista de la Visión Marzo 15, 2012: Orador: Sandra and Hope González - Madre e hija Grupo de Juego Sábado 14, de Enero, 2012 10am a Medio Dia La Casa de Annie Chaney Hable a la oficina de DSACC Juntas de la Mesa Directiva son el tercer miércoles Del mes, a las 6pm, en la Oficina de DSACC D.A.D.S. Las Juntas Son el Segundo Lunes a las 6pm Round Table Pizza entre Willow y la Herndon Para mas información, llame a Arturo Arias al (559) 978-1686 Las Siguientes Juntas Son: Enero 9 y Febrero 13 Entrenamiento de Padres que Extienden una Mano Sábado, 21 de Enero del, 2012 10am a 3pm Oficina de DSACC Almuerzo del día de la Amistad y Desfile de Modas Sábado, 11 de febrero, 2012 10:30am a 1:30pm International Catering Company 10:30am - Revisión, Hora Social, Subasta 11:30am - Desfile de Modelaje y Almuerzo Boletos son $40 por persona Fecha límite para comprar los boletos es el 3, de Febrero, 2012 9
Almuerzo del día de la Amistad & Desfile de Modas Salado, 11 de Febrero, 2012 10:30 am Revisión, Hora Social, Subasta 11:30 am Almuerzo & Desfile de Modas International Catering Company 4277 N. West Ave. Fresno, CA 93705 Los boletos son $40 por persona ($20 para la persona con Síndrome de Down). Puede comprar los boletos en la oficina de DSACC o en nuestra página web, www.dsacc.org. Favor de comprar sus boletos no mas tarde del Viernes 3, de Febrero, 2012 Niveles de Patrocinación Patrocinador de Corazón de Oro - $1000 - Los Patrocinadores recibirán su firma prominente en el evento, mencionándolo en el programa, reconocimiento en la mesa y publicidad en la revista de DSACC. Los Patrocinadores de Corazón de Oro también pueden escoger a un representante para que modele durante el desfile de modas y también recibirá 10 boletos para el evento. Patrocinador Azul- $500 Los Patrocinadores serán mencionados durante el programa, reconocimiento en la mesa y publicidad en la revista de DSACC. Los Patrocinadores de Azul recibirán 4 boletos para el evento. No se olvide de mandar sus nominaciones para el Educador del Año y Proveedor del Cuidado de La Salud del Año. Podrá obtener las formas de nominación en la oficina de DSACC o en nuestro sitio web, www.dsacc.org. Favor de mandar su nominación no mas tarde del Viernes 13, de Enero, 2012. FELICIDADES HUGO TORRES TU ERES UN EJEMPLO A SEGUIR! Hugo fue homenajeado por el equipo de Football de los Bulldogs de la Secundaria de LeGrand. Actualmente Hugo tiene 37 años y nació en una era en donde se creía que la única salida para un niño con Síndrome de Down era una Institución. Gracias al amor y el apoyo de su madre Esther, Hugo creció como cualquier otro niño normal. Cuando Hugo estuvo en la escuela secundaria nunca tuvo la oportunidad de jugar football. Pero esto no lo limito de tener esa gran admiración por su equipo. Cuando le preguntan qué es lo que más te gusta del programa? Su respuesta es todo. Rick Martínez, el entrenador del equipo dice que la mayor contribución de Hugo para el programa es el apoyo que brinda a los jugadores, el en realidad demuestra a todos lo que es ser un verdadero fan. Hugo asiste a las practicas 3 veces por semana, ayuda al entrenador con los ejercicios y los acompaña a la mayor parte de los juegos. Los jugadores del equipo comentan que cundo Hugo está presente les trasmite esa alegría y entusiasmo que siempre lo acompaña. El hecho de sentir el apoyo y ver la alegría de Hugo cuando les grita buen trabajo muchachos les da más ánimo para ganarle al equipo opuesto. Cuando los jugadores celebran su triunfo, Hugo los felicitaba diciéndoles buen trabajo muchachos los quiero Hugo ha sido parte del equipo durante los últimos 11 anos. Gracias Hugo por ese amor incondicional y por mantener siempre tu espíritu en alto eres una enseñanza para todos! 10
Spotlight! Meet Tracy James 2012 DSACC Board Member at Large and Self-Advocate At 42, Tracy James continues her desire to learn and be involved at Break the Barriers (BTB) through their dance and performance arts programs. She also recently joined the Diamond Learning Center for continuing education, and pursues her interest in volunteering in her community. Tracy is also the newest self-advocate serving on the Down Syndrome Association of Central California Board of Directors Early on, Tracy stepped beyond Down syndrome, and amazed all who met her. She overcame early physical challenges to go on to win gold medals at several International and National Special Olympics Games in gymnastics and swimming, and has continued to dance her way through life. In recent years, Tracy lost both her older brother and more recently, her mom. She believes in daily prayer, and says she overcomes her loss of brother by listening to his Tracy assisting Emily Archon at Break the Barriers favorite music, and dedicates her dance performances to her mom. Tracy learned to read and write at an early age, and today composes many 'instructional notes' to her family and friends. Tracy has learned basic computer skills and is learning to 'E-mail'. Her family is sure that one day they will see one of her 'notes' go viral! With a natural joy for life and love of people, Tracy overcame her shyness by volunteering and speaking at community-based organizations to promote issues and organizations dear to her. She also helps fund-raise for these organizations, as well as lend her support on educational issues related to Down syndrome. Tracy also enjoys her time as a volunteer assistant coach at BTB. Tracy is thrilled to be joining the Board at Down Syndrome Association of Central California, and looks forward to a great year! Let it Shine~Let it Shine! Continued from Page 5 Let your ears join your heart for this inspirational performance that brings audience members from throughout the state. This magical evening also includes sweet treats, an art show, a silent auction and show stopping raffle prizes. For more information, go to www.dlclife.org, find us on Facebook at DLC L.I.F.E. Diamond Learning Center or call (559) 241-0580. Diamond Learning Center L.I.F.E. Where Learning is For Everyone Proceeds benefit the nonprofit GEMS for L.I.F.E. 11
Happy New Year's from your friends at DSACC! 4277 W. Richert Ave. Suite 102 Fresno, CA 93722 Nonprofit Organization US Postage PAID Fresno, CA Permit No. 2383 Return Service Requested