Down Syndrome Association San Antonio July 2011 newsletter

Downs

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Down Syndrome Association of San Antonio • 2800 NW Loop 410 • San Antonio, TX 78230 • 210-349-4372

Volume 13, Issue 3

JULY 2011

What’s

inside...

Executive Director ..............1

NDSC Convention ..............2

Buddy Walk ........................2 Government Affairs ............3 Welcome ..............................3 Kindermusik........................4 ABC Music & Me ................4 Playgroup ................................4 Teen Club ............................4 Kid Connection ..................5 Out & About........................5 Adult Matters! ....................5 H.U.G.S. ..............................5 Volunteer Highlight ............6 News & Notes ......................6 Special Events ......................6 Support Groups ..................7 Extra 21st Chromosome ....8 Meet Kinley ........................9 D.A.D.S. ............................10 Contributions....................11 Special Olympics Athens ..11 Who We Are ......................11 Calendar of Events ............12

www.dsasa.org

KEEPING UP WITH

Message from Terri Mauldin ...

Welcome to the summer issue of the Down Syndrome Association’s newsletter! Summer is in full swing with many events, changes, and additions to the DSASA. In the April issue, I mentioned that we would be hiring a new Special Events Coordinator, and I am very pleased to introduce Stephanie Anderson. Stephanie joined the DSASA at the end of April and has been a great addition to the organization. She brings lots of event planning experience and is also the mother of three children, Allie (6), Ashlyn (5) and Aaron (2). Aaron has Down syndrome.

Please help me welcome Stephanie to the organization!

Another addition to the organization will be the new monthly Parent Support Group meetings on the Southside of San Antonio! We will be holding our first meeting on July 19th. These meetings will be held at the De Paul Learning Center at 7607 Somerset Rd. There is more information about these meetings in this newsletter.

We look forward to serving more families in the San Antonio area and hope you will join us each month!

The annual Spring Picnic held on Sunday, May 19th was a huge success! Over 300 people enjoyed the day at Landa Park. A huge “thank you” to HEB (Brookhollow location) for donating a gift card to help offset food costs and Chili’s (Bandera location) for donating the hamburgers and buns. We appreciate the talent of our facepainters, Julie Beth Witter and Deborah Rubinstein. Thanks also to Kevin Wright and Bubba Lytle for the food donation and for braving the heat of the day to cook for everyone!

On Saturday, June 11th the 8th Annual Audrey’s Day at the Beach was held in Rockport, Texas. Many of our families attended this awesome event and enjoyed sun, water, food, and tons of fun! Thank you to the Shockley family and all the volunteers in Rockport! Bill, Jackie, Ray, and Aggie graciously host this wonderful event enjoyed by all!

At the June board meeting, Bill Cade stepped down as Chairman of the Board after three years. I want to sincerely thank Bill for his dedication and hard work to help the DSASA get to where it is today. I also thank his family, Patty, Jessica, Billy Jr., and Cathy, for allowing Bill to dedicate his time to the DSASA. The DSASA welcomes Christy Anderson as the new Chairperson of the Board. Christy served as a Member at Large for a year and then as Vice-Chair for the past year.

Christy brings her experience as a professional businesswoman and parent to the board, and we are excited to see what we can accomplish in the years to come.

Other recent changes to the board include two resignations, Dennis Johnson and Gary Stinnett. Both members regrettably left the board for personal reasons.

We appreciate the time and dedication they both provided to the DSASA. At the June meeting, we welcomed three new board members, Edward Leos, Noe de la Garza, and Lamont

Jefferson. Edward owns his own marketing business and will bring his terrific experience to the organization; Noe is an Account Executive with Univision Terri Mauldin Corporation and is a new father of a little boy with Down syndrome; and Lamont is an attorney with Haynes and Boone and is the uncle of Julian Chapa, a seven year old with Down syndrome. Please join me in welcoming all three of these new members to the Board of Directors.

In the next few months, you will see the HEB reusable bags appear again in all the HEB stores in Texas. Our own Natalia Diaz was the artist who designed the bag that was sold in April of this year, and because it was such a hit and sold out very quickly, HEB has decided to reprint more bags and sell them in September/October. We held another coloring contest for a new HEB bag that will go on sale March 21, 2012 in honor of Down Syndrome Awareness Day. I am excited to announce that Natalia Diaz has won again! Natalia’s drawing is very colorful, bright, and representative of San Antonio and Texas. HEB will produce about 80,000 of these bags, and the DSASA will once again receive a portion of the sales of the bags.

Congratulations, Natalia!

We have two big events coming up in the next two months – the NDSC National Down Syndrome Convention on August 5th – 7th at the JW Marriott Hill Country and the Buddy Walk on Saturday, September 24th at Heroes Stadium. We are in need of volunteers for the Youth & Adult portion of the Convention. If you can volunteer your time for some or part of the weekend or know someone who is interested, please visit http://convention.ndsccenter.org/volunteer. The Buddy Walk registration site is open and ready for team registrations and donations. For more information, please see the article on page 2.

As you can see, the DSASA is busy! We hope we are providing the best support and services to the children and adults with Down syndrome – they are our inspiration and make our jobs so enjoyable! In order for us to be as efficient as possible, please call the DSASA office if you plan to attend any of our events. At most of our events, we provide food and refreshments, and we base the purchase of these items on the number of people who have RSVP’d. We also understand that plans can change after you have called the office, so please try to let us know if will not be able to attend so we can adjust our numbers and not purchase unnecessary items.

I hope everyone enjoys the rest of the summer! I look forward to seeing everyone at the NDSC Convention in August or at the Buddy Walk on September 24th.

Keeping Up With Downs

Buddy Walk 2011 VOLUNTEERS NEEDED! The National Down Syndrome Congress Annual Convention is coming to San Antonio!

FRIDAY, AUGUST 5 – SUNDAY, AUGUST 7 JW MARRIOTT SAN ANTONIO HILL COUNTRY Volunteer support is vital to making this a memorable event for attendees. The DSA is supporting the convention by providing over 300 volunteers age 18 or over. Our most important volunteer need is support for the Youth & Adults Conference. In order to provide the best experience possible for these self-advocates (youth & adults ages 15 and older with Down syndrome), we need extensive support over the three days (approximately 85 people each day!). The volunteers guide and interact with the self-advocates throughout the events of the day. No previous experience is necessary just flexibility, the desire to interact directly with self-advocates and the willingness to have fun. Other volunteer opportunities through the general convention include registration, audiovisual support, session hosts, bilingual Spanish speakers, and floaters. If you are interested in volunteering or if you know of student groups, corporate groups or others who would like to volunteer, visit the NDSC convention website to register http://convention.ndsccenter.org/volunteer or contact the DSA office at 210-349-4372 or downsynassc@dsasa.org.

Important Information if you’re Attending the NDSC Convention! If you are attending any of the sessions at the NDSC Annual convention at the JW Marriott on August 5-7, we need your help as a Session Host! Responsibilities of a session host include: • Welcome everyone to the session and introduce the speaker.

Biographies of the speakers are provided.

• Disseminate evaluation forms and report an attendance count.

• Collect any leftover handouts and completed evaluation forms at the end of the session and bring them back to the NDSC table.

• Report any audio visual needs, room issues or other concerns.

• Precon session host will also check-in registered attendees and provide a name tag for entry into assigned precon room.

The NDSC has posted the session schedule at http://convention.ndsccenter.org/wpcontent/uploads/2011/07/WorkshopSchedule.2.pdf. Once you have determined the sessions you’ll be attending, please contact the DSA office to sign up to be a session host!

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11th ANNUAL BUDDY WALK! The 2011 Buddy Walk will be held Saturday, September 24, 2011 at Heroes Stadium, 4707 David Edwards Dr. (Thousand Oaks and Wurzbach Pkwy, near Morgan’s Wonderland) beginning at 7:00 a.m. Please join the San Antonio community as we celebrate the gifts and diversity of children, men, and women with Down syndrome and help raise awareness within our city of the need for acceptance and inclusion of these wonderful people!

Schedule of Events: 7:00 a.m. Registration 7:00 a.m. Exhibitors and Entertainment Begins 8:00 a.m. Opening Ceremonies 9:00 a.m. Buddy Walk begins around Heroes Stadium with Honorary Buddies, Shaun, Debbie and Katie Kennedy REGISTRATION IS FREE! However, registration is still required by September 2nd to guarantee a Buddy Walk T-shirt. Tshirts are not guaranteed if registering on the day of the walk. In addition, pre-registered T-shirts must be picked up prior to 9 a.m. at the Buddy Walk. Remember, Buddy Walk is the DSA’s biggest fundraiser of the year, so in lieu of a registration fee, we encourage you to make a tax deductible contribution and to raise donations from families and friends to support the programs and services of the DSA. Prizes will be awarded for the top fundraisers!

Registration is now available online at www.dsasa.org. You may also print out a registration form and mail it in. Though registration is free, you must register in order to receive your Tshirt. You can also create your own Buddy Walk personal page to share with family, friends, doctors, therapists, and colleagues. It’s a convenient and simple way to share information about Buddy Walk and raise money through personalized emails to your supporters.

Prewalk T-shirt Pickup: Register, pick up your T-shirts, or submit donations at the Buddy Walk Prewalk T-shirt pickup to be held on Saturday, September 17th from 9 a.m. - 12 noon at the Down Syndrome Association’s office at 2800 NW Loop 410 (access road on eastbound 410 between Cherry Ridge and Vance Jackson).

Remember, all pre-registered shirts MUST be picked up prior to 9 a.m. at the Buddy Walk or they will not be guaranteed.

Awards: The top 3 fundraising teams as of midnight September 17th will each receive a VIP canopy for your team to “hang out” in during the Buddy Walk festivities, a goody basket, and recognition on the day of the walk.

Corporate Sponsors: Thank you to Valero, HEB Tournament of Champions, North Park Lexus, Royal Management, PCI Education, Speech and Language Center of Stone Oak, C.H. Guenther & Sons, Gordon Hartman Family Foundation, Cavender Audi, Deerfield Animal Hospital, Amegy Bank of Texas, Allstate, Clear Vision Inc., and Progressive Life for their sponsorship of Buddy Walk 2011. If you know of a company that

www.dsasa.org is interested in sponsoring the Buddy Walk, please contact the DSA office at 210-349-4372.

Walk Day Volunteers: If you are interested in volunteering on the day of the walk, please register online at www.dsasa.org or contact the DSA office at 210-349-4372 or downsynassc@dsasa.org.

Syndrome Association of San Antonio recognizes the need for a Government Affairs Committee (GAC) to address various policy issues that face our unique community of people and the urgency to help those professionals become more aware of the needs of people with Down syndrome. Since becoming chair of GAC, and in collaboration with other affiliates and organizations such as the National Down Syndrome Society (NDSS), we have managed to: • Assist in passing World Down Syndrome Day in our great state of Texas.

Cavender

• Assist in passing the respectful language bill.

• Identify and fight to change the Sonogram Bill which, in its language, gives unborn children with Down syndrome less value.

Government Affairs

by Leah Chapa - Government Affairs Director I am a parent … just like you. I love my children and want the best for them … just like you. I am deeply committed to their health, education and social wellbeing … just like you. So what is it about raising a child with disabilities that can make this effort so difficult to accomplish? It’s because, just like you, I assumed that the medical and educational professionals knew about the multiple issues facing our children with Down syndrome and how those issues impact their world; and the expectations for protection by the law.

However, if you’ve been blessed with the gift of a child with Down syndrome, you’ve probably discovered that is a very broad assumption. There are professionals who have devoted a great amount of time and energy to understanding the world of Down syndrome and improving the quality of life for these citizens. We are deeply indebted to those professionals. Regrettably, not all professionals pursue the same high standards. And though the law may have good intentions for protection, some of the mandates/policies are outdated and vague.

When my son was almost 4 months old, I began to recognize the lack of information in the medical community. At 1-1/2 years, I realized that many therapists have limited knowledge. And at 3-1/2 years, the educational professionals proved how much my son’s success depended on my ability to advocate for him. After 4 years of litigation, we finally settled our lawsuit against the school district in the 5th Circuit Court of Appeals. Examining the terms of our settlement, it was truly a success. However, when you look at a child’s development, he could have been robbed of some of the most formative years of his life. The reason my son is thriving is because of the time my husband and I invested in educating ourselves. We became the doctors, therapists, legal counsel and educators; however, it was not without the very costly price of our time, energy, well-being and financial commitment. The Down

• In partnership with NDSS, host the upcoming Texas Down Syndrome Government Affairs Committee Conference that will teach affiliates how to develop and/or strengthen organizations, parents, local experts and advocates to develop common goals and a plan of action to achieve those goals, among other things.

We are excited about our short-term accomplishments, but even more excited about our long-term gains. As chair, I would appreciate your help, input and support as DSASA Government Affairs Committee partners with the Texas affiliates to prompt enormous change for our Texans with Down syndrome to help them live exceptional lives.

Welcome!

WE WOULD LIKE TO WELCOME OUR NEWEST MEMBERS TO THE DOWN SYNDROME ASSOCIATION FAMILY! If you know someone who has a child or family member with Down syndrome, please let them know about the DSASA and the services we provide. We’d be happy to reach out to help in any way possible!

Jesse Arias / Chris and Myrna Arias Davian Astran / Isodoro and Jennifer Astran Zaryna Blue / Justin and Aniceta Blue Eugenio de la Garza / Noe and Adrianna de la Garza Gabriel Fricano / Dawn Fricano Hannah Galvan / Ricardo Galvan and Abigail Diaz Elijah Gamez / Jessica Gamez Cameron Gonzales / Jeannie Gonzales Michael G. Hernandez / Gilbert and Jennifer Hernandez Nathaniel Hernandez / Cristobal Hernandez and Elizabeth Davila Abigayle Mangum / Joe and Amanda Mangum Brennen Padilla / Joey and Heidi Padilla Mason Reyes / Paul and Vanessa Reyes Kimberly Robinson / Larry and Marcia Robinson Michael Ruiz, Jr. / Michael and Amanda Ruiz Claire Schorsch / Kendall and Amber Schorsch Elvis Silva / Elena Perez Eli Tucker / Erol and Donna Tucker Gene Vasquez / Sonya Vasquez Aiden Williams / Krystal Williams

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Keeping Up With Downs

Playgroup

by Anabel Pearson – Playgroup Director WHY KINDERMUSIK? • Kindermusik provides reading readiness, an essential component to prepare children for school.

• Kindermusik classes are vocabulary-rich, providing songs and movement which help young children solidify the meaning of these new words.

• Classes teach active listening (paying attention to the sound and understanding) which is a learned skill and is essential for school success.

• Kindermusik makes great parenting easier! When a parent puts Kindermusik songs and activities into practice at home, it turns a fussy child, a high-chair moment, or diaper-changing into a more calm experience for both parent and child.

Come experience for yourself why more parents around the world choose Kindermusik more than any other music and movement program! Now being offered for infants to 7-year-olds at both locations of the Musical Arts Center of San Antonio: 12732 Cimarron Path, Suite #100 (Near IH10/De Zavala) and 202 NE Loop 410 (Steinway Piano Gallery). For more information call 210-725-2277 or visit www.KindermusikAtMACSA.com

The Down Syndrome Association Playgroup is a playtime for children ages 0-3 and their parents. The DSA will pay for entry fees to these activities (if applicable) for the child with Down syndrome and their siblings. Please RSVP for each event to Stephanie Anderson at sanderson@dsasa.org or 210-349-4372.

SATURDAY, AUGUST 27 - DSA FAMILY DAY AT SPLASHTOWN See page 6 for more information.

SATURDAY, SEPTEMBER 24 - 11th ANNUAL BUDDY WALK See page 2 for more information.

SATURDAY, OCTOBER 8 - MORGAN’S WONDERLAND Meet at the entrance at 10 a.m. 5223 David Edwards Drive, 78233.

Come explore the park with friends from the DSA! Bring a sack lunch, and we will picnic in the park!

Kindermusik

(For Ages Birth - 5)

11- 11:45 a.m. Music Arts Center Northwest (IH 10 & De Zavala), 12732 Cimarron Path, Ste. 100, 78249. Please RSVP if you are planning to attend since materials are needed for each lesson.

TUESDAY, SEPTEMBER - 6th, 13th, 20th and 27th TUESDAY, OCTOBER - 4th, 11th, 18th and 25th

ABC Music & Me is a research-based language and early literacy program built around music and created by Kindermusik. ABC Music & Me helps develop pre-literacy and language skills through a child’s most-loved rituals: music and storytime.

ABC Music & Me supports the early childhood standards and requirements for “high quality programs” as defined by the National Institute for Early Education.

What A Child Will Experience In Class • Songs and rhymes to develop phonetic awareness and early reading skills.

• Tapping, clacking, and ringing rhythm instruments in time with music to improve hand-eye coordination.

• Focused listening with music to improve skills in following directions.

Teen Club

The Teen Club is open to all teens with any disability between the ages of 13 and 17. The goal of the Teen Club is to foster friendships, stimulate socialization, and increase positive self esteem. Chaperones will be in attendance at each event. The cost of Teen Club events will be covered by the DSA for the teen and one special needs, age-appropriate friend. Please RSVP for each event to Stephanie Anderson at sanderson@dsasa.org or 210-349-4372.

SATURDAY, JULY 30 - INSPIRE ART – TYE DYE 10 - 11:30 a.m. Inspire Fine Art Center, 200 Queen Anne Court, 78209. Please bring a white t-shirt to tye dye.

• Instrument play to strengthen fine motor skills.

SATURDAY, AUGUST 27 - DSA FAMILY DAY AT SPLASHTOWN See page 6 for more information.

• Developmentally-appropriate songs to develop vocal chords and expressive speech.

SATURDAY, SEPTEMBER 24 - 11th ANNUAL BUDDY WALK See page 2 for more information.

• Learning that emphasizes storytelling, imaginative play, and taking turns.

SATURDAY, OCTOBER 15 - INSPIRE ART – CREATE MASKS 10 -11:30 a.m. Inspire Fine Art Center, 200 Queen Anne Court, 78209.

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www.dsasa.org

Kid Connection

Adult Matters!

by Tim McIntosh, Kid Connection Director

by Julie Cheatwood - Adult Matters! Director

The Down Syndrome Association Kid Connection is our gathering designed for family social activities. We welcome all children with special needs and their families! Our events are specifically designed for ages 4 - 12. The DSA will pay the admission for the individual with Down syndrome and their siblings. Parents are responsible for their own admission. A discounted rate will be offered when possible. Please RSVP for each event to Stephanie Anderson at sanderson@dsasa.org or 210-349-4372.

Adult Matters! is a social program specifically designed for our adults with DS ages 18 and older. The focus is on providing an environment to help them further develop their social skills, build friendships among other adults with DS, and offer them safe and appropriate interactions within the community. In order to foster that environment, we encourage them to invite an age-appropriate peer (another adult with special needs) to participate with them.

DSA will pay the participation fee for both of them. We realize that our adults depend on family and friends for transportation to and from these activities, so we will always try to plan activities that offer a place where parents/guardians can gather nearby (restaurant, coffee shop, etc.) and visit with each other during the event. Please RSVP for each event to Stephanie Anderson at sanderson@dsasa.org or 210-349-4372.

SATURDAY, JULY 30 - SAN ANTONIO CHILDREN’S MUSEUM 10 a.m., 305 E. Houston Street, 78205. Please meet at the front entrance at 10 a.m. DSA will pay admission fee for child with DS and siblings. Parents will be responsible for their entrance of $3.

Please RSVP no later than July 25th.

SATURDAY, AUGUST 27 - DSA FAMILY DAY AT SPLASHTOWN See page 6 for more information.

SATURDAY, SEPTEMBER 24 - 11th ANNUAL BUDDY WALK See page 2 for more information.

SATURDAY, OCTOBER 8 - MORGAN’S WONDERLAND Meet at the entrance at 10 a.m. 5223 David Edwards Drive, 78233.

Come explore the park with friends from the DSA! Bring a sack lunch, and we will picnic in the park!

SATURDAY, JULY 16 - PUTT-PUTT GOLF 11 a.m. The Ice and Golf Center at Northwoods, 17530 Henderson Pass, 78232.

SATURDAY, AUGUST 27 - DSA FAMILY DAY AT SPLASHTOWN See page 6 for more information.

SATURDAY, SEPTEMBER 24 - 11th ANNUAL BUDDY WALK See page 2 for more information.

SATURDAY, OCTOBER 15 - INSPIRE ART – CREATE MASKS 10 - 11:30 a.m. Inspire Fine Art Center, 200 Queen Anne Court, 78209.

Out & About

Mom’s Night Out and Dad’s Night Out are opportunities for Moms & Dads to get together and build social connections within our DSA family. Our events are held on a bi-monthly basis. Please contact the DSA office at 210-349-4372 or downsynassc@dsasa.org if you will be attending.

MOM’S NIGHT OUT WEDNESDAY, AUGUST 17 – GODAI SUSHI BAR AND JAPANESE RESTAURANT 11203 West Avenue, 78213, 7 p.m.

WEDNESDAY, OCTOBER 5 – MIMI’S CAFÉ 17315 W Interstate 10, 78257, 7 p.m.

DAD’S NIGHT OUT WEDNESDAY, AUGUST 31 – BIG’Z BURGER JOINT 2303 N. Loop 1604 W, 78258, 7 p.m.

WEDNESDAY, OCTOBER 19 – GRIMALDI’S 15900 La Cantera Parkway, 78256, 7 p.m.

The DSA’s HUGS program is an easy way to donate to the DSA through automatic monthly installments via all major credit cards or checking accounts. The minimum amount can be as low as $5 per month ($60/year). Every donation helps support all of the DSA programs. Visit the DSA website and click on the HUGS link to start your monthly giving today!

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Keeping Up With Downs

Volunteer Highlight News & Notes JANICE TROY

By Terri Mauldin – Executive Director

INSPIRE FINE ART CENTER 200 Queen Anne Ct., San Antonio, TX 78209.

Call 210-829-5592 or visit our website at www.inspirefineart.org for more information.

• Summer camps for children ages 6-13 through August 19, 8:30 a.m. -12:30 p.m. $130 for the week. Each week there is a different art activity, ie: Puppet Mania, Found Art Sculpture, Jungle Fever, and Space Creatures in Clay.

• Fall classes in visual arts (Drawing, Sculpture, Painting, Ceramics) Sept. 19 - Dec. 16. Classes are for children starting at age 6 thru adults.

I first became involved with the DSA shortly after Briana was born (5/2/97). A friend who had a family member with Down syndrome invited me to a Down Syndrome Support Group of San Antonio meeting – that was what it was called way back then! It was essentially what the Parent Support Group is now. I felt an immediate sense of “family” at our first meeting – everyone welcomed us so warmly. Many of the families had been through what we were going through (imminent heart surgery) and understood the joys and difficulties of raising a child with Down syndrome. It was nice to talk with people who were going through or had been through the same trials. Sharing with those families who were just a few steps ahead of us helped us understand and prepare for the next steps (therapies, preschool, etc.). I still clearly remember the strong tie I felt to the group – I had such a yearning to attend the meetings every month. I always came away with new information or just an incredibly positive outlook. Our best friends are still some of those families we met at that first meeting!

– By Janice Troy When we decided it was time to recognize a DSASA volunteer, I immediately knew it had to be Janice Troy. As you can see from Janice’s input above, she became involved with the DSASA when she needed support and a sense of acceptance. What I want to focus on is what happened after Janice began attending the monthly support group meetings. Janice has taken on the role of website designer, Buddy Walk registration expert, newsletter editor, and most recently, Volunteer Coordinator for the NDSC National Down Syndrome Convention. Janice has dedicated countless hours (most during the nighttime hours when her children are in bed) helping the DSASA in all these areas. There has never been a time when I have called her to ask for help that she said she was too busy or didn’t know how to help. If she doesn’t know how to help, she goes out on her own to find the answer without my knowledge.

I can honestly say the DSASA would not be as advanced and sophisticated as it is today if we did not have Janice Troy helping us. I will never find the words to express my gratitude to Janice, and I hope all our families, board members and community feel the same way. THANK YOU, JANICE!

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• Free Family Art Day is every 2nd Saturday from 10 a.m. - 2 p.m.

There are 3 - 4 art activities for the parents and children to experience. Inspire varies the projects, so people are exposed to different media. Each child makes a “passport” and gets it stamped every time they come. After 4 stamps they receive a free t-shirt and after 7 stamps they receive 50% off a children’s class. Come join in the fun!

THANK YOU FOR MAKING THE 2011 “TOOLS FOR TEACHING STUDENTS WITH DOWN SYNDROME” CONFERENCE A HUGE SUCCESS! On June 18th we had over 100 participants attend the DSASA Tools for Teaching conference. We welcomed a mix of educators, administrators, paraprofessionals, therapists, parents and grandparents. All who attended walked away with new and innovative ideas on teaching our students! We would like to thank Earl of Sandwich – Park North for donating breakfast and Barbara Samfield of Speech and Language Center at Stone Oak for providing the delicious Earl of Sandwich lunch. Cindy Miller of Region 20 was a great host and provided an amazing facility for our conference. We especially thank our presenters, Amy Allison and Katherine Bishop, for spending the day sharing their ideas and expertise.

Special Events DSASA FAMILY SPLASHTOWN DAY Saturday, August 27. Families must arrive by 11 a.m. so group tickets can be purchased. The DSA will pay the admission fee for the child or adult with DS and their siblings. Parents, guardians and/or caretakers are responsible for their own admission fee of $9.99/person.

Please RSVP by August 19th to 210-349-4372 or sanderson@dsasa.org.

Splashtown is located at 3600 IH35 North, 78219.

Don’t forget your towel and sunblock!

SAVE THE DATE – DSASA ANNUAL HOLIDAY PARTY Tuesday, December 20th • Villita Assembly Building 5:30 p.m. – 8:30 p.m.

www.dsasa.org

Support Groups The Parent Support Group monthly meetings are designed for parents, grandparents, siblings, and friends of children with Down syndrome. The meetings are an opportunity for participants to share experiences and concerns with others, in addition to receiving information from speakers who share their knowledge of issues relating to Down syndrome.

NEW! SAN ANTONIO SOUTHSIDE PARENT SUPPORT GROUP

by Julie Aldana and Sally Schopp, Southside Branch Directors De Paul Family Center, 7607 Somerset Road, San Antonio, TX 78211. We are launching a new Parent Support Group that will meet on the 3rd Tuesday of each month from 6 - 7:30 p.m. Our kick-off meeting will be held on July 19th and will be a meet and greet with dinner! The first few meetings will be open forum where we get to know each other and determine what speakers are needed and wanted from the group. If you require childcare, please RSVP with the ages of your children to the DSA office at 210-349-4372 or downsynassc@dsasa.org. We look forward to seeing you there!

TUESDAY, JULY 19 Topic: Meet and Greet with Dinner TUESDAY, AUGUST 16 Topic: Buddy Walk Information / Open Forum Speaker: Terri Mauldin TUESDAY, SEPTEMBER 20 Topic: Open Forum TUESDAY, OCTOBER 18 Topic: Open Forum

SAN ANTONIO NORTHSIDE PARENT SUPPORT GROUP

by Mendy Roberts, Northside Branch Director Coker United Methodist Church, 231 E North Loop Rd., Gibbs Room 1108, San Antonio, TX 78216. First Tuesday of each month; 6:30 - 8:30 p.m. Parents are encouraged to attend and PLEASE use the childcare for this event by calling 210-494-3455 x245 at least 48 hours in advance. Please leave a detailed message when making a reservation. Out of respect to our speakers, we ask that all children over the age of two be left in childcare.

TUESDAY, AUGUST 2 - (ROOM CHANGE to Wesley 806) Topic: Buddy Walk – everything you need to know to plan your 2011 walk!

Speaker: Terri Mauldin TUESDAY, SEPTEMBER 6 Topic: Music Therapy Speaker: Megan Rhoden, MT-BC TUESDAY, OCTOBER 4 Topic: Navigating ARDs and IEPs Speaker: Sylvia Farber, Advocacy 101

NEW BRAUNFELS PARENT SUPPORT GROUP

by Gloria Pinal – New Braunfels Branch Director The Down Syndrome Association’s New Braunfels Branch serves families in Comal and Guadalupe counties. Our meetings are held the second Wednesday of each month from 6 - 7:30 p.m.

Currently, we are rotating locations based on the presentation so please see each meeting date for location details. Please RSVP for each event by contacting the DSA office at 210-349-4372 or downsynassc@dsasa.org.

WEDNESDAY, JULY 13 Topic: Estate Planning for Families with Special Needs Speaker: Walter J. Rudecki, B.A., M.A., J.D., LL.M Location: Southbank Clubhouse. Take Hwy. 725 East from IH-35 1.5 miles to (second traffic signal) South Bank Blvd. Go 4 blocks to clubhouse on the right.

WEDNESDAY, AUGUST 10 Topic: Buddy Walk Planning Speaker: Terri Mauldin • Location: TBD WEDNESDAY, SEPTEMBER 14 Topic: Navigating ARDs and IEPs Speaker: Shanie Bowers, Special Education Director, Comal ISD Location: Comal ISD Support Services, 1404 IH 35 North, New Braunfels, Texas 78130 WEDNESDAY, OCTOBER 12 Topic: Physical Therapy Speaker: Rebecca Greebon, PT Location: Alight Pediatric Therapy, 2660 E. Common St., Suite 101, New Braunfels, TX 78130

FLORESVILLE PARENT SUPPORT GROUP

by Tammi Burleson, Floresville Branch Director The Down Syndrome Association’s Floresville Branch serves families in Wilson and Atascosa counties. Floresville Event Center, 600 Hwy 97 W, Floresville, TX 78114. Second Thursday of each month; 6 - 7:30 p.m. Please RSVP for each event by contacting the DSA office at 210-349-4372 or downsynassc@dsasa.org. The Floresville Branch has a lending library! The Branch Director can assist you in checking out materials.

THURSDAY, JULY 21 (Please note: This is the 3rd Thursday due to a scheduling conflict) Topic: Speech and Signing Speaker: Nana Knowles THURSDAY, AUGUST 11 Topic: Kinetic Kids Speaker: Tracey Fontenot THURSDAY, SEPTEMBER 8 Topic: What do you Look for in a Daycare?

Speaker: Yvonne Caballero, CCL, Daycare Inspector, Texas State Licensing Department THURSDAY, OCTOBER 13 Topic: Special Needs Trusts Speaker: Anna Torres, Attorney at Law

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Keeping Up With Downs

Extra 21st Chromosome

THE EXTRA 21st CHROMOSOME: CREATING THE CONDITIONS OF ALZHEIMER’S DISEASE

By Paul Watson, proud dad of Nathan

I have an 8-year-old son with Down syndrome. I am sure that you, like us, have made more than your fair share of doctor and therapist visits to deal with medical problems and issues resulting from DS. I bet that you have taken him or her to a speech therapist, an OT or PT, a heart specialist, eye doctor, or an ENT for ear tubes. These involve common medical symptoms linked to the extra 21st chromosome. Like the parent of any child, you seek treatment to address these medical issues and make your child’s life better. Are you aware that genes on Chromosome 21 also control brain chemistry? The extra copies of these genes cause several brain chemistry imbalances that lead to the difficulties our kids have in memory, learning, and communication. And now, some of them have been identified as creating the brain chemistry of Alzheimer’s disease. These genes specifically cause the excess production of 2 key chemicals that build in the brain of every Alzheimer’s patient, and they are building TODAY in your child with DS!!! This is not disputable. Study after study at leading university research institutes end with the same results, indicating active Alzheimer brain chemicals in the brain with DS.

and made other health issues manageable. Today, we stand at the cusp of truly understanding and treating the brain chemistry issues that limit our kids’ potential to learn, remember, and communicate, and that affect them with Alzheimer chemistry. It is likely that researchers will achieve FDA approved drug therapies that reduce the development of Alzheimer’s chemicals and remove some of those limits. In fact, in animal models of Down syndrome, mental retardation has been mostly reversed and near normal brain functioning restored, including the reduction of the Alzheimer chemicals. Here is what every parent needs to know: Research at major universities have identified specific brain chemicals that are disrupted and imbalanced by the genes on the extra 21st chromosome.

• These chemicals disrupt communication within the brain, affecting brain cell growth, sleep, and speech.

• These chemicals slow brain and nerve signaling to 1/3 the speed of typical, damage brain cells, inhibit memory formation, and disrupt learning pathways.

• Two of these chemicals are key components of Alzheimer’s disease.

• These chemicals can be targeted for treatment in the same manner we use medication to target the brain chemicals in ADHD, depression, and anxiety without fundamentally changing who a person is.

Researchers have identified over 7 potential drug targets to improve learning and memory, and more are on the horizon.

• Researchers have found compounds that successfully treated these targets in mice bred with DS, resulting in near normal learning and memory. In humans, we expect to also see improvement in communication.

• Researchers have identified compounds that reduced the development and effects of Alzheimer chemicals in DS animal models.

The picture above is from a just-published UCLA study of DS and Alzheimer brain chemistry. Every DS patient showed significant Alzheimer chemical levels had built by the mid-30s in the areas of the brain that have the largest role in memory, learning, and behavior! The 33-year-old with DS shows Alzheimer chemistry (depicted green) in the front area of the brain nearly equal to a 61-year-old Alzheimer’s patient!

If the doctor told you today that your kid was developing leukemia, would you act to stop it? The doctors at UCLA and other institutions are telling you today that Alzheimer chemicals are developing now in your child. What will you do? There is good news, so keep reading!

For generations, Down syndrome has been a sentence to poor health with short life expectancy and mental retardation. Medical advances have raised life expectancy from 9 years old into the 50s

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• Pilot human trials are getting underway. These are the start of the FDA process to bring new medicines on line targeting the imbalanced brain chemicals This takes money, strategic planning, public advocacy, and family involvement.

• The Down Syndrome Research and Treatment Foundation (www.dsrtf.org), Research Down Syndrome (www.researchds.org), and the Global Down Syndrome Foundation are leaders in charitable funding of this work, using a strategic plan to research and develop safe & effective FDA approved medication.

• The National Down Syndrome Society (www.ndss.org) is a leader in family support, public policy, and advocacy at the federal level and at the National Institute of Health (NIH). With NDSS and other’s inputs, the NIH has developed a “Research Plan on Down Syndrome.”

www.dsasa.org • NIH funding of DS research is 6 to 8 times less than many other NIH supported medical issues. We need the NIH to significantly step up funding to bridge the gap in translating the university research success to pharmaceutical production.

One of the biggest barriers to developing the needed medications is the DS Community itself. The Cystic Fibrosis and Parkinson’s communities are each raising over one hundred million dollars a year to develop medical treatments and are loudly advocating for their development. Our community contributes under $3 million per year and is largely silent, making it easy for Congress, NIH, drug companies, and researchers to focus elsewhere. This really slows the progress, and lets your child travel down the Alzheimer disease path. But it doesn’t have to be that way!

Things to do: 1) Visit www.researchds.org and www.dsrtf.org to learn more.

Sign up for their newsletters!

2) Donate at the websites to support the research and development of FDA approved medication.

3) Participate in DS research when opportunities arise; spread the word that the learning and memory issues of DS are brain chemical imbalances that likely can be treated through the FDA medication development process!

4) Answer ‘calls to action’ as the leading researchers and their support organizations progress on this work. Email pjbwatson@yahoo.com to join a Call to Action list.

Meet Kinley “I love a pretty little girl, her name is Kinley Brynn And she is the sweetest in the world, you should see her grin.

there on Down syndrome, there aren’t any books written about ME. I’d like to write my own story, thank you very much!

“And I love a pretty little girl, with eyes blue as the sea.

For she is the sweetest in the world, I love her, she loves me.”

It is true; I’m called a doll daily when we’re out and about, but I think my truly impressive skills happen when I wave and say “hi” to these kind people. My parents say I’m invigorating, addicting, and peaceful all at once ... in a package that was different from what they expected, but an even bigger blessing than they could ever have prayed for. My parents spent their life preparing for me even if they didn’t know it at the time, and now I can call an attorney, speech therapist and teacher as part of my team. Daddy, Mommy & Grandma all have high expectations for me, just as they have for themselves.

“And I love a pretty little girl, I’ll love her for all time.

For she is the sweetest in the world, she’s my child divine.”

They sing to me often; I inspire poetry from Grandma, advocacy from Daddy, and unconditional acceptance from Mommy. I will teach the world that we are all different and yet so much alike. I will live in the moment and insist that others around me do the same. I will give unto this world so much more than anyone could have imagined.

Kinley is the first child of Danielle Edwards (29) and Zachary Edwards (31). She spends time at Grandma’s, Gymboree, and play dates. Kinley enjoys Sandra Boynton books and Keller Williams “Kids” CD. Her aunt has a belly-dancing class on Saturdays called “Kinley’s Class” (www.karavansa.com), and she’d love to see you there!

Her eyes light up, her smile ignites, The world stands still, and poets write Amazing words about this girl, whose name is Kinley Brynn…”

They sing to me often; sometimes I let my hands sing along to the oldies like “Wheels on the Bus” or “If You’re Happy and You Know it”, but “Twinkle, Twinkle Little Star” is my favorite. If there’s a star anywhere, I’m known to laugh and sign along. When I’m in the mood I’ll even add some vocals.

“And I love a pretty little girl, with hair as red as fire, For she is the sweetest in the world, she’s my heart’s desire.”

My red hair was nearly as much of a surprise as my extra chromosome when I was born 16 months ago, and I continue to enjoy showing off in unexpected ways. While there are books out

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Keeping Up With Downs

KICK OFF MEETING!!

Thursday August 4, 2011 at 6:30pm Aldaco’s at Sunset Station 100 E Hoefgen San Antonio 78205 RSVP to 210-349-4372 or sanderson@dsasa.org Heavy appetizers, iced tea and water will be provided

The attitude of the father becomes the attitude of the family.

D.A.D.S. Mission Important topics addressed in kickoff meeting: • • • • • • •

What is D.A.D.S. and why is it important Fathers share their stories and talk about their kids Action steps for starting a D.A.D.S. chapter Outline for successful meetings Working collaboratively with sponsoring DS organization Leadership roles available within D.A.D.S. chapters Areas of focus D.A.D.S. groups may wish to adopt

We came together for our kids, we stayed together for each other.

Your Presenter: Joe Meares formally served on the boards of Down Syndrome Indiana and Best Buddies Indiana. He now serves as chair of D.A.D.S. National and board president of the Down Syndrome Affiliates in Action Trade Association. Joe has been honored with several national awards for his service to the Down syndrome community and he speaks often at state and national conferences on D.A.D.S., advocacy and issues close to him.

Joe thoroughly enjoys having the opportunity to meet fathers and hear their stories in D.A.D.S. chapter meetings around the country. When he is not traveling, Joe enjoys spending time with his wife Cheri and their four daughters.

www.dadsnational.org 317-523-5888 info@dadsnational.org

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Our mission is to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome.

What does a D.A.D.S. Group Do? • •

Monthly meetings with topics relevant to fathers Supports local Down Syndrome group fundraising

• •

Provides ongoing support and communication for fathers Creates programs, events and opportunities for fathers to become strong advocates

events through manpower and financial resources

Goals for D.A.D.S. Groups • • • • • •

To create a network of fathers willing to develop a program based on the needs of the men involved To enhance a father’s knowledge and resources on supporting a child/teen/adult with Down syndrome To enhance personal advocacy skills To heighten a family’s ability to cope with the unique challenges associated with Down syndrome To provide a safe atmosphere where men can openly share To build camaraderie and friendships among fathers

www.dsasa.org

Contributions

We sincerely appreciate the following people who have so generously donated to the Down Syndrome Association.

Your contributions help us offer a variety of programs for the members of our organization.

Debbie Albright AT&T United Way Employee Giving Campaign Noe Cantu Marie Cassidy in honor of Stephanie Crane Center for Maternal-Fetal Care (Dr. Kenneth Higby) Citigroup Employee Giving Campaign DevDogz Software, Inc. Jayna Halliday Elna Jeanes Dorothy Jones David Kipp in honor of Gabriel Hey Pam Kruse in memory of Emily Giacobbe Katherine Little in honor of Lili Little Marietta K. Randall Foundation Sharon McConnell Clara Santos Ondarza in honor of Rafael Hildago P.E.C. United Charities, Inc. Padgett, Stratemann & Co. Stephen Ramseur in honor of Riley Ramseur Kendall Schorsch in honor of Claire Schorsch United Health Group - Employee Giving Campaign Maria Weaver in honor of Dr. Bob James Wright's Production Equipment Specialists, LLC Richard Wyckoff in honor of Cory Wyckoff

Who We Are MISSION STATEMENT The DSA’s mission is to provide support and services to children and adults with Down syndrome and their families.

EXECUTIVE DIRECTOR Terri Mauldin 210-349-4375 • tmauldin@dsasa.org

VOLUNTEER/OFFICE COORDINATOR Angie Cronin 210-349-4372 • acronin@dsasa.org

SPECIAL EVENTS COORDINATOR Stephanie Anderson 210-349-4372 • sanderson@dsasa.org

DSA BOOKKEEPER Vicky Akers 210-349-4372 • vakers@dsasa.org

BOARD OF DIRECTORS Chairperson – Christy Anderson Vice Chairperson – VACANT Secretary – Lisa Drozdick Treasurer/Finance – Debbie Albright Member at Large – Barbara Samfield Member at Large – Tim McIntosh Member at Large – Michelle Pettit Member at Large – Jessaca Bond Member at Large – Noe de la Garza Member at Large – Lamont Jefferson Member at Large – Edward Leos

PROGRAM DIRECTORS

Congratulations to the San Antonio Firedawgs / Team USA - they won the gold medal in softball at the Special Olympics World Games in Athens!!! They beat Russia 21-9 to take gold! We are so proud of our hometown champs - well done!

New Braunfels Branch Director – Gloria Pinal Floresville Branch Director – Tammi Burleson Adult Continuing Education Director – VACANT Adult Matters! Director – Julie Cheatwood Calendar Director – Maria Hey Governmental Relations Director – Leah Chapa Kid Connection Director – Tim McIntosh Parent Support Group Director – Mendy Roberts Playgroup Director – Anabel Pearson Public Relations Director – Janice Troy Spanish Outreach Director – VACANT Teen Club Director – VACANT

THE DSA IS ON FACEBOOK! Become our Friend at www.facebook.com/dsa.sanantonio

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JULY 19 16 21 30 30

Calendar of Events 6 San Antonio Southside PSG: Meet & Greet with Dinner, De Paul Family Center, 7607 Somerset Road, 6 - 7:30 p.m.

Adult Matters!: Putt Putt, Ice and Golf Center at Northwoods, 17530 Henderson Pass, 11 a.m.

Floresville PSG: Speech and Signing, Floresville Event Center, 600 Hwy. 97 W, 6 - 7:30 p.m.

Kid Connection: San Antonio Children’s Museum, 305 E. Houston, 10 a.m.

Teen Club: Inspire Fine Art Center, 200 Queen Anne Court, 10 a.m.

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AUGUST 2 San Antonio Northside PSG: Buddy Walk Information, Coker UMC, 231 E. North Loop Rd., Wesley 806, 6:30 - 8:30 p.m.

4 D.A.D.S. Kick Off Meeting: Aldaco’s Sunset Station, 100 E. Hoefgen, 6:30 p.m.

10 New Braunfels PSG: Buddy Walk Information, Location TBD, 6 - 7:30 p.m.

11 Floresville PSG: Kinetic Kids, Floresville Event Center, 600 Hwy. 97 W, 6 - 7:30 p.m.

16 San Antonio Southside PSG: Buddy Walk Information/Open Forum, De Paul Family Center, 7607 Somerset Road, 6 - 7:30 p.m.

Mom’s Night Out: Godai Sushi Bar, 11203 West Ave., 7 p.m.

DSASA Family Day at Splashtown: 3600 IH35 North, 11 a.m.

Dad’s Night Out: Bigz Burger Joint, 2303 N. Loop 1604 W., 7 p.m.

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SEPTEMBER 6,13,20,27 - Playgroup Kinder Music: Music Arts Center Northwest, 12732 Cimarron Path, Ste. 100, 11 a.m.

San Antonio Northside PSG: Music Therapy, Coker UMC, 231 E. North Loop Rd., Gibbs 1108, 6:30 - 8:30 p.m.

Floresville PSG: What to Look for in Daycare, Floresville Event Center, 600 Hwy. 97 W, 6 - 7:30 p.m.

New Braunfels PSG: Navigating ARDs and IEPs, Comal ISD Support Services, 1404 IH 35 North, 6 - 7:30 p.m.

Tshirt Pickup for Buddy Walk: DSA Office, 2800 NW Loop 410, 9 a.m.-noon San Antonio Southside PSG: Open Forum, De Paul Family Center, 7607 Somerset Road, 6 - 7:30 p.m.

Buddy Walk: Heroes Stadium, 4799 Thousand Oaks Dr., 7 a.m.

OCTOBER 4,11,18,25 - Playgroup Kinder Music: Music Arts Center Northwest, 12732 Cimarron Path, Ste. 100, 11 a.m.

4 San Antonio Northside PSG: Navigating ARDs and IEPs, Coker UMC, 231 E. North Loop Rd., Gibbs 1108, 6:30 - 8:30 p.m.

5 Mom’s Night Out: Mimi’s Café, 17315 IH-10 West, 7 p.m.

8 Playgroup & Kid Connection: Morgan’s Wonderland, 5223 David Edwards Dr., 10 a.m.

12 New Braunfels PSG: Physical Therapy, Alight Pediatric Therapy, 2660 E. Common St., Suite 101, 6 - 7:30 p.m.

13 Floresville PSG: Special Needs Trusts, Floresville Event Center, 600 Hwy 97 W, 6 - 7:30 p.m.

15 Adult Matters & Teen Club: Inspire Fine Art Center, 200 Queen Anne Court, 10 a.m.

18 San Antonio Southside PSG: Open Forum, De Paul Family Center, 7607 Somerset Road, 6 - 7:30 p.m.

Dad’s Night Out: Grimaldi’s, 15900 La Cantera Parkway, 7 p.m.

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RETURN SERVICE REQUESTED Down Syndrome Association of San Antonio 2800 NW Loop 410 San Antonio, TX 78230 NONPROFIT ORG U.S. POSTAGE PAID SAN ANTONIO, TX PERMIT NO 1126