JANUARY/FEBRUARY2016 TDSN News

THE OFFICIAL NEWSLETTER OF THE TRIANGLE DOWN SYNDROME NETWORK IN RALEIGH, NC

SYDNEY GOESTO COLLEGE

NEWSLETTERThe TDSN News is published

bimonthly online. We currently have approximately 900 email subscrib-ers. For email subscriptions, please visit: www.TDSN.org or Triangle-DownSyndrome.org to set your de-livery preferences. Contact the office at (919) 803-0515.

ADVERTISING/SUBMISSIONSTDSN accepts advertising from

companies and organizations that align with our mission supporting families of children with Down syn-drome. Contact the office for adver-tising rates and policies.

The deadline for submitting advertisements is the first day of even-numbered months for the following issue. Submissions are due by the 10th of evennumbered months. Any information received after that date will be considered for the next newsletter.

TALK BACKJoin our Email Support Group — a

place to chat with other members, ask questions, share successes and challenges, offer advice, as well as post pictures of your family. Please visit google.com/groups and search for TDSN. Click to subscribe to the group and your request will be sent to the moderator. If you have not joined, please visit www.tdsn.org to subscribe to the Newsletter.

BOARD OF DIRECTORS

President: Jerry HigginsVice President: Stanley Monk

Treasurer: Beth LaPierreSecretary: Tara Moore

Board: Nick DozierKevin GriffinBarb Kocher

Marcia Van Riper

Having a local support group welcoming our son Andrew into the world when he

was born back in 1999 made a huge difference for our family. Instead of negative, outdated attitudes about Down syndrome we first encoun-tered, they em-powered us with a message of “no limitations.” That support set us on the right path to find supports Andrew needed.

When we moved to the Triangle from Connecticut a couple years later, we were overwhelmed by an unexpected death in the family and the move itself. We were distraught over the idea of starting that search for Andrew’s services over again—until we found the Triangle Down Syndrome Network. Rather, until they found us. We will never for-get Mary Zahn was the first person that reached out to us from TDSN, which made us feel welcomed and set us on the path to find the services Andrew needed.

Mary and her husband Billy were involved with TDSN since its be-ginnings, and deserve credit for how it has gown into a thriving support group and vital resource for our fam-ilies. To say we rely on Billy’s finan-cial expertise, guidance and passion for supporting families, like their own, who have a child or loved-one with Down syndrome, would be putting it mildly. So, as Billy stepped down as treasurer on Jan. 1, I want to say a heartfelt thank you for his invaluable service, dedication and leadership, but the words seem equally inadequate.

Billy has a huge heart and passion

for families dealing with the chal-lenges of having children born with special needs. He has spent count-less hours through the years not only working on TDSN’s finances but also on other volunteer boards, such as the Miracle League of the Triangle, helping every child have a chance to play baseball, and at the same time, benefitting many of our TDSN families.

Billy says he will be just a phone call away to offer advice or help with how to continue to provide support for new parents of children with Down syndrome in the area and all of our TDSN families.

I want to thank him for his years of service. I want to thank him for being a friend and for being some-one I can call any time and seek his opinion on anything. I know I will get a straightforward answer, perhaps one I don’t want to hear but one that is honest, thoughtful and incredibly appreciated.

Thank you Mary and Billy from not only me but all TDSN families.

BEST WISHES

In speaking about the Miracle League of the Triangle, I want to give best wishes to North Raleigh Coordinator Trisha Brothers, who is fighting cancer after having brain surgery recently. Trisha is a friend to TDSN and has worked as a devel-opmental therapist for individuals in our group.

Trisha is one of our big fans and the admiration is reciprocated. Please drop her a line of support at the Miracle League of the Triangle offices. Trisha, we’re thinking of you and you have lots of others pulling for you to get back to good health.

FROM THE PRESIDENTJERRY HIGGINS | TDSN BOARD PRESIDENT

TDSN ON PARADE CONTACT US

Triangle Down Syndrome Network friends and family took part in the 2015 Raleigh Christmas Parade on Nov. 21 in downtown Raleigh. The TDSN float made its way down the 1.5-mile route before approximately 65,000 people (the Raleigh parade is the largest between D.C. and Atlanta, according to parade organizers). Joining the TDSN crew was ABC 11’s Heather Waliga, who has emceed our organization’s annual Buddy Walk for the past three years.

Program DirectorLindsay Tipton

Information line: (919) 803-0515Triangledownsyndrome.org or

TDSN.org

Mailing AddressPO Box 37505 Raleigh NC 27627

Street Address1012 Oberlin Road, Suite 300

Raleigh, NC 27605

FACEBOOK /triangledownsyndrome

TWITTER/triangleDSN

INSTAGRAMtdsnpics

PINTEREST/triangledownsyn

The Triangle Down Syndrome Network is built around three main pillars of our

mission — support, educate and connect.

With all that we do, we make sure that programs planned and dollars spent fit solidly into at least one of these three concepts. While all that we do is beneficial to individuals with Down syn-drome and their families, our new parent outreach is of substantial importance. We want to be sure that all families feel the support they need, on whatever level they may be needing, as they welcome their new loved one with Down syndrome into their family.

For the past two years, we have focused on improving our New Par-ent Outreach program. Throughout the summer of 2014, we worked on an updated version of our New Parent Book (available for online viewing here). In April of 2015, we continued improving our New Parent Outreach as we welcomed Sarah Cullen from the Massachu-setts Down Syndrome Congress to train veteran TDSN parents to serve as First Call parents.

This year, we are eager to contin-ue work on this important program as we improve our New Parent Baskets, providing information about Down syndrome and local resources, but most of all, a warm and loving congratulatory welcome for a new baby. Most importantly, we hope to improve connections with local hospitals and medical providers so that all parents in our area welcoming a child with Down

syndrome have access to current information and the support from fellow parents.

As we begin work on this project, we’d love to hear from our veteran parents. What was helpful? What do you wish you had, or what do you wish someone had told you? Your feedback can help us improve the first days, weeks and months for parents beginning the journey with which many of you have become so familiar. Similarly, if there was information you were seeing on our website and could not find, please let us know. We plan to add more information and resources for new parents in the coming months and your feedback is always appreciated.

As with any project, we can use your help! With only 1.5 staff, we rely heavily on our volunteers. If this is a project you find close to your heart, we would love to have you join us. Whether you’d like to contribute items to the baskets, help pack baskets, provide outreach to local hospitals, or help in a vari-ety of other ways, please contact me at lindsay@triangledownsyndrome.org.

I hope you and your family have started 2016 with joy and excite-ment. There is promise for this year to hold many great things for each one of us.

Keep us posted throughout the year on milestones reached and goals accomplished. And as always, let us know if we can offer any support as you journey toward those accomplishments.

We are here for you!

KEEPING UP WITH THE PROGRAMLINDSAY TIPTON | TDSN DIRECTOR

BIRTHDAYSJANUARYAdalyn Abernethy Brody Cole Allen Gabrielle Angelini Erika Bass Danni Behm Nicholas Bowen Jaiyla Bronson Ava-Marie Brown Emma Carlson Kaitlyn Chesnut Joshua Yuhjune ChungCourtney Crown Hailey Dean Elijah DobbsMarla Ellis Matthew Evans John Evans Leslie Romero Flores Abigail Frechette Casey Freeland Jake Gerber Teagan Gillikin Jacob Gutierrez Jake Holly Fairooz Hussain Ethan Irish Aubrey Johnson Shelby Johnston David Edward Kenney Paul Kocher Nicholas Little Lisa Marie Martinez Kyndra Mate January Sage McPhee Noah Miller Janetta Millikin Jonathan Mitchell Jaxon Parker-Shon MooreMyles Monk Ishan Munshi Aaron Parker Grace Paxton Tristan Pham Aaron Emmanuel Phifer Kyra Phillips Andy Radakovich Anna Ragusa Nicolas Reynolds Brielle Robinson Sarah Spruill Tyler Sweany Rachel Aaliyah Turner Christopher Valentine Thea Weinert Adrian Antwaun Williams Olivia Wood Mackenzie Woodard

FEBRUARYJennifer Abbruscato Matthew Andrews Lane Arnold Michael Bailey Samuel Baker Luke Makain BalboaMia Barbato Caleb Bigsby Brian BJ BuckleyAlexander Blake Mattie Rose BreaultOlivia Bullock Nicholas ClaridyCaroline Adelaide ColeyTheresa DagostinoMaggie Derksen Megan Dudek Anna Ericsson Alexander J FairleyJosi Ferguson Jenna Claire FoglemanJackson Fox Joshua Fulton Alexander Furiness Megan Gannon Ashley Gibbons Emory Handrich Andrew Higgins Cole Hodge Lindsay Holcombe Conner Holloman Laythan Innes Mason Jones Shepard Lee Wilson Lloyd Jenny Lowther Frankie Malone Ben Mattern Kennedy Merritt Andrew Christian MillerKrystal Monter-Catalan Savannah Moseley Elijah Nunery Susanna Oates Jaziel Milan PadillaWyatt Parker Abigail Pataky Landon Peed Kaden Phares Kory Powell Israel Reid Amanda Reinholtz Emily Grace RollinsLisette Runyan Bentley Ayden SalterJada Spivey Ricky St. JohnJordan Stanley Janna Macie SuttonAnthony Tharrington Branton Watters Carter Wilkins Conner Williamson

Patti Davis noticed a change in her daughter over the Christ-mas break. Sydney was more outgoing, more independent

and could suddenly make a mean cheese omelet (better than Patti could ever do).

The impetus behind the change? College.

Sydney, who was born with Down syndrome, is entering her second semester at Clemson University this month. She’s part of the school’s ClemsonLIFE program, designed specifically for students with intellec-tual disabilities who desire not only a college education, but the true “col-lege experience” as well.

It’s a program that Patti fell in love with when it came time to choose the right place for her 21-year-old daugh-ter — so much so that she actually felt

comfortable knowing Sydney was in good hands more than five hours away from her Raleigh home.

“Sydney always knew she was going to college,” her mother said. “When we were finally ready to start looking, there were six or seven in this area that we were interested in. We visited UNC Greensboro and Coastal Caroli-na, but none of these schools have the track record that Clemson has when it comes to students with disabilities. After our visit, I loved it, and most importantly, Sydney loved it.”

ClemsonLIFE’s two-year basic program incorporates “functional academics,” in addition to indepen-dent living, employment, social skills and health and wellness for Sydney and her classmates. An additional two years (the Advanced Program) go deeper into workplace experience, community integration and indepen-dent living with reduced support. Those who complete both programs receive a certificate of postsecondary education.

“They work so well with these kids,” Patti said. “Four days a week, they’re with mentors. There’s a lot of free-dom, but it’s really structured as well. Why wouldn’t you want your child — especially if they have a disability — to go to a more structured environ-ment, one that helps them prepare for the real world.”

Sydney’s first semester last fall

ORANGE & PURPLECOLLEGE LIFE WAS THE PERFECT FIT FOR SYDNEY DAVIS AND HER FAMILY

included courses in math, literacy, employment and disability awareness, as well as relationship building and reasoning skills. But the highlight of the experience for the outgoing (and giggly) college freshman was a new-found social life.

“My favorite part was going to the football games and tailgating with my friends” she said. “We’re No. 1.”

The top-ranked Clemson football program (which faces Alabama in the national title game on Jan. 11) has embraced students in the Clemson-LIFE program as well. Sydney and her classmates were allowed to run the field with Coach Dabo Swinney, and she has a photo touching the famous Howard’s Rock with Swinney and Clemson President James Clements.

Dropping her daughter off five-plus hours away from home — in another state — is still surreal to Patti. But the trip this January is much easier than the one last August, as she knows her daughter is in good hands and is get-ting a lot out of the experience.

“When she was a baby, I didn’t know anything about Down syn-drome. It was tough … when she was little, I was concerned with the help I thought she would need,” she said. “Little did I know she could do so many things on her own. She’s taught us so many things, and as she grew, I just expected more out of her. I knew she could do more — more than many people ever thought she could.”

Sydney is already passing on college advice to her 17-year-old sister Ash-lynn Sawyer (a high school senior) and her 16-year-old brother Tullis. And she already has her future mapped out — she’s moving to California after college to work at Walt Disney headquarters.

Then, she said, she’s getting mar-ried. Hopefully to someone who loves omelets.

— by Billy Liggett

By Beth LaPierre TDSN Board Treasurer

As TDSN moves into 2016, the

Board realizes our organization is at a critical juncture. We must take a look at what is TDSN’s mission in real terms and not in a statement of purpose. We’ve heard from a few of you about what you would like to see from us in the future, and we hope to hear from many more of you as we begin work on our first Strategic Plan in several years.

This Plan will answer some of the following questions:

• What does TDSN want to look like in the future?

• What is our purpose?• Who do we serve (ideally)?• How will we know we are

successful? The TDSN Board is thrilled to

share that we have partnered with Ruth Peebles of Innovative Non Profit Solutions (INS Group) to embark on creating our Strategic Plan. We face new opportunities and challenges in the upcoming year and this Plan will serve to guide us over the next several years.

The INS Group will lead TDSN through an eight-step strategic planning process and will facilitate discussions among the Board and TDSN staff. The goal of this process

is to reach consensus about what end results the organization is try-ing to achieve over the next three years and the means to accomplish those results.

As always, your input and opin-ions are incredibly important. We are here to serve you! Please take a few moments to share your feed-back and ideas for TDSN. You can email your anonymous input to rpeebles@insgroup.com.

And, stay tuned to the TDSN website, Listserv and the newsletter for additional opportunities to pro-vide input as we gather data over the next few weeks.

TDSN’S STRATEGIC PLAN

DINE OUT FOR DOWN SYNDOMEBurger 21 will donate 10 percent

of its total sales for the day on Jan. 21, to the Triangle Down Syndrome Network. Please consider dining out with them on that day to thank them for their support and to bene-fit TDSN.

Burger 21 is located at 14220 Bradford Green Square in Cary. Enjoy lunch or dinner at Burger 21 on Jan. 21, between 11 a.m. and 9:30 p.m. We hope to see you there!

WELCOME, MARCIA!TDSN is happy to welcome Marcia

Van Riper RN, PhD, FAAN to the Board of Directors.

Marcia is the chair of the Family Health Division at UNC. She has a joint appointment in the School of Nursing and the Carolina Center for Genome Sciences. The primary focus of her program of research is the family experience of being tested for and living with a genetic condition, with special emphasis on families of individuals with Down syndrome.

Marcia and her international col-leagues are currently conducting a mixed-methods, cross-cultural study designed to address existing gaps in knowledge concerning how cultural scripts and a variety of family factors (i.e., family demands, family apprais-al, family resources, family problem solving communication, family coping, and family management styles) contribute to adaptation and resilience in families of individuals with Down Syndrome.

To date, more than 1,200 parents of individuals with Down syndrome from more than 10 countries have participated.

In 2012, Marcia was awarded a Fulbright Scholar Award to spend 6 months at the Catherine McAuley School of Nursing and Midwifery,

University College Cork, Ireland, collaborating with faculty on family research, teaching, and publishing.

We are thankful that she is adding work with TDSN to her impressive resume.

JANUARY8 Marbles Family Fun Night, from 5:30 to 8 p.m. at Marbles Kids Museum. Admission is free.

8 Snowflake Ball, 7 to 9:30 p.m., at Cary Academy. Admission is $5.

9 TDSN Tots Playdate at Kinder Village Music Studio, 11:30 a.m., located at 2425 Kildaire Farm Road, Suite 405 in Cary. RSVP to rsvp@triangledownsyndrome.org

11 TDSN Board Meeing, 6:30-8 p.m., TDSN Office

11 Kindergarten Roundup We-binar — IEP and Least Restrictive Environment, 7 to 8 p.m. Partici-pate from home. RSVP at triangle-downsyndrome.org/k

14 Creating Financial Security Lunch & Learn, 11:30 a.m. to 1 p.m., TDSN Office. RSVP to rsvp@triangledownsyndrome.org

16 Learning program, 10 a.m. to noon, at Colonial Baptist Church

21 Mom’s Night Out, 6:30 p.m., at Kenney home in Fuquay-Varina. RSVP to rsvp@triangledownsyn-drome.org

25 Kindergarten Roundup Webi-nar — Home School Communica-tions, 7 to 8 p.m. Participate from home. RSVP at triangledownsyn-drome.org/k

30 Making Sense of the IEP, 10 a.m. to noon, TDSN Office. RSVP to rsvp@triangledownsyndrome.org by Jan. 25

31 Kendra Scott fundraiser, Streets of Southpoint

FEBRUARY1 Kindergarten Roundup Webinar — Setting the Stage for Success in Kindergarten, 7 to 8 p.m. Participate from home. RSVP at triangledownsyndrome.org/k

6 New Parent Social, 10 a.m. to noon, Pleasant Grove United Methodist Church. RSVP to rsvp@triangledownsyndrome.org

13 TDSN Tots Playdate, 10 a.m. at Borowiecka home in Raleigh. RSVP to rsvp@triangledownsyn-drome.org

15 TDSN Support Meeting — Post Secondary Education, 6:30 pm., TDSN Office. RSVP to rsvp@triangledownsyndrome.org

20 The Learning Program, 10 a.m. to noon, Colonial Baptist Church

26 BRICK Movie Night, 6:30 to 8:30 p.m., TDSN Office. RSVP to rsvp@triangledownsyndrome.org

CALENDAR JANUARY/FEBRUARY 2016

LUCIA GETS HER PERMIT!Dec. 15 was a special day for Lucia

Romano, her family and for our Down syndrome community.

After months of studying, practic-ing in rural areas and a few attempts at the test, Lucia passed the written test for her North Carolina driver’s permit. Lucia’s mom, Maria, credits her husband, Francisco, for believing Lucia could do it and never giving up.

Lucia is in the minority for num-bers of individuals with Down syndrome to achieve this milestone, but hopefully the hard work and determination from her and her family will provide hope and encour-agement for others, allowing that number to grow in years to come.

Congratulations, Lucia, and thank you for being an inspiration to us all!

LUNCH & LEARN: JAN. 14Join us over lunch to learn about

creating financial security for a loved one with special needs on Jan. 14. You will learn how to prepare for two generations of financial security, how to build a team and will cover key aspects to a special needs plan.

The program will feature Beth LaPierre (TDSN Board Member, par-ent and financial advisor) and David Woody (CLU, ChFC, financial advisor and parent). Special guest will be attorney Debbie McDermott (Ken-non Craver).

Lunch will be served and RSVPs are required by Jan. 7. It will be held at the TDSN office, 1012 Oberlin Road, in Raleigh, from 11:30 .m. to 1 p.m.

PARTY & PICS WITH SANTAHoliday cheer was in the air on

December 5 as we joined forces with The Arc of the Triangle to host the third annual Party and Pics with Santa. Santa’s workshop and The North Pole were bustling with excitement as Santa greeted visitors with smiles and hugs, high fives and fist bumps.

We are thankful to Good Shep-herd Lutheran Church for hosting this fun family event each year. The Marriott was so gracious as they do-nated all of the refreshments for the nearly 400 individuals that came through the door.

We appreciate our photogra-phers, Patricia Meszler and Steve Rubin, who donated their gifts of time and talent so that families could have a beautiful photo with Santa to cherish for years to come.

Last but certainly not least, many thanks to all of our volunteers, including staff from Wake County Public School System, who came out on a Saturday in December to ensure a fun day for our families. Each and every one of you are ap-preciated for helping to ensure this was once again a magical event!

Transition from Pre-K to Kindergarten What every parent needs to know!

Kin de rg ar te n Tran si t io n s P rog ram

Kindergarten Roundtable

December 3rd 6:30-8, Triangle Down Syndrome Network 1012 Oberlin Rd. Suite 300, Raleigh

Parents of 3-5 year olds can connect and network as they prepare for Kinder-garten transition. Parents of elementary aged children will be available to talk about their experience with the transition and their child’s experience in kindergarten. Representatives from Wake County Public Schools will make a short presentation about transition and be available for questions. While there will be Wake County specific information presented, this is open to all families.

Webinar Series

Monday, January 11th 7-8 pm IEP and Least Restrictive Environment

Monday, January 25th 7-8 pm Home-School Communications

Monday, February 1st 7-8 pm Setting the Stage for Success in Kindergarten

Please rsvp for the Kindergarten Roundtable by 5pm on Tuesday, December 1st and for the Webinar Series by 5pm on Thursday January 7th

www.triangledownsyndrome.org/k RSVP@triangledownsyndrome.org (919) 803-0515

Triangle parents and caregivers of children with special needs are invited to the special Kindergarten Transitions program designed to prepare parents for the transition from preschool to kindergarten.

The program consists of an in-person

Kindergarten Roundtable

followed by 3 webinars:

IEP and Least Restrictive Environment

Home-School Communications

Setting the Stage for Success in Kindergarten

Kindergarten Is your family

ready?

AFIE-advocates for inclusive education w w w . n c i n c l u s i v e e d u c a t i o n . o r g

We are looking for children to take part in a clinical trial involving 10 visits over 9 months. We will be testing a new investigational medicine to see if it will help children with Down syndrome with learning, memory and performing normal daily activities. We don’t know yet if the new medicine will work.

Does your child have Down syndrome?

Is your child between 6 and 11 years old?

Contact usPlease contact us if you are interested or have any questions.

Thank you for your interest.

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Jane Ann BakerDuke University Medical Center, DUMC 103857, 905 S La Salle St, Durham, NC 27710janeann.baker@duke.eduTel +1 919 668 4576 Fax +1 919 668 0414