MARCH/APRIL2016 TDSN News

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

A NEW RESOURCESTATE’S NEW DOWN SYNDROME WEBSITE

WILL BETTER EDUCATE PARENTS AND PROVIDERS

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

On behalf of the Triangle Down Syndrome Network Board, I want to wish ev-eryone a happy and won-

derful World Down Syndrome Day!What is World Down Syndrome

Day? When is it and who came up with it?

A little history, from Down Syn-drome Interna-tional:

WDSD was first observed in many countries in 2006. The Down Syndrome Association of Singapore took the lead and hosted the WDSD website from 2006 to 2010 for Down Syndrome International. They used the website for awareness and record the various world recognition activities.

On Dec. 19, 2011, the United Nations General Assembly declared March 21 as World Down Syndrome Day. According to the Down Syndrome International website, the General As-sembly decided to “designate 21 March as World Down Syndrome Day, to be observed every year beginning in 2012” and “invites all Member States, relevant organizations of the United Nations system and other international organi-zations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day in an appropriate manner, in order to raise public aware-ness of Down syndrome.”

Why March 21 and not October, when we celebrate the Buddy Walk? It makes sense to have this event on the third month of the year and the 21st day because it signifies “the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syn-drome,” according to Down Syndrome International.

TDSN has celebrated World Down Syndrome Day in various ways, from hosting an event at the Governor’s Mansion in Raleigh with Governor Pat McCrory to Lots of Socks. Last year we went in the community and shared popcorn at various Redbox outlets pro-moting TDSN and Down syndrome awareness.

While we were unable to coordinate an event with the Governor this year, once again the Mansion will be lit blue for Down syndrome awareness on March 21. And the great folks at Kings Bowling (141 Park at North Hills St., Suite 120) will host a bowling event for World Down Syndrome Day from 6 to 8 p.m. Kings will donate the lanes and pizzas for TDSN families. Everyone who attends can contribute a donation to TDSN on behalf of World Down Syndrome Day.

Every year, the day has a theme. This year, the theme is “My Friends, My Community.” This is a great way for us to demonstrate the benefits of inclusive environments for today’s children and tomorrow’s adults.

According to Down Syndrome International: “People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults. This includes the opportunity to participate fully in their communities.

The reality for many is that prevailing negative attitudes result in low expecta-tions, discrimination and exclusion, cre-ating communities where children and adults with Down syndrome cannot integrate successfully with their peers.

But where children with Down syndrome and other disabilities are given opportunities to participate, all children benefit from this and environ-ments of friendship, acceptance, respect for everyone and high expectations are created.

FROM THE PRESIDENTJERRY HIGGINS | TDSN BOARD PRESIDENT

A DONATION TO GO CONTACT US

In January, Burger 21 donated 10 percent of its total sales for the day to Triangle Down Syndrome Network. The restaurant, located at 14220 Bradford Green Square in Cary, donated $340 to TDSN. Thank you, Burger 21!

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

Planning for two of our biggest days of the year have kept things busy at the TDSN office these first few months of 2016. The

three pillars of our mission, to support, educate and connect, are summed up in these two one day celebrations annually — World Down Syndrome Day and the Buddy Walk.

This year we are thrilled to be celebrating World Down Syndrome Day, March 21 (read letter from our president, Jerry Higgins, for more information on the symbolism and history behind this day) at Kings Raleigh Bowling and Entertain-ment. We will gather families together to share in the celebration of that third copy of the 21st chromosome. Families can share stories, successes, challenges and support one another throughout their journey.

It is our plan to have quarterly family gatherings such as this throughout 2016 to emphasize the importance of support between families sharing a similar diag-nosis. In addition to families celebrating together, we have once again invited our community to participate in this event through Dress Down for Down Syn-drome and Lots of Socks. Businesses can offer their employees the opportunity to Dress Down for Down Syndrome in exchange for a small donation to TDSN. For businesses, groups or schools that wish to participate without raising funds, awareness can be built around Down Syndrome by sporting Lots of Socks on March 21.

For more information or to request

materials, email lindsay@triangledown-syndrome.org.

Because of the fun it generated last year, we are once again planning a day of Random Acts of Kindness on or around March 21. TDSN will provide packs of popcorn with a postcard attached sharing information about World Down Syndrome Day and TDSN. Individuals and families can place packs of popcorn at Redbox machines in the area so that customers renting a movie can enjoy a snack on us while learning a little about the extra 21st chromosome at the same time. Popcorn can be picked up at Co-lonial Baptist Church in Cary between 10 a.m. and noon on March 19, or by arranging a time to stop by the TDSN office on Oberlin Road during the week of March 14.

While World Down Syndrome Day is fast approaching, plans are well under-way for our second big celebration of the year — the Buddy Walk! Mark your calendars for Oct. 9. We are thrilled and honored to have the support of the Town of Holly Springs this year. They have generously sponsored the 2016 TDSN Buddy Walk Fundraiser and this year’s event will be held at Sugg Farm. This is a great venue that boasts ample parking (yay!) and a wide variety of opportuni-ties for our celebration. Our planning committee will meet for the first time on March 16 at 6:30 p.m. at the TDSN office. We would love to have you join us! Contact me at any time for more information. All ideas are welcomed and encouraged!

I hope to see many of you at events coming up over the next several months. I wish you all a very happy World Down Syndrome Day! Thank you for all you bring to our organization.

KEEPING UP WITH THE PROGRAMLINDSAY TIPTON | TDSN DIRECTOR

BIRTHDAYSMARCHKalee AldermanMoses BolelaMichael BolenChloe BrownKamryn BrownCaroline Bryan TaJon BryantJoseph CarrollBenjamin ClavijoZachary CoghillRobert ColondresBrenna ConnerEmily CorbettDexter CoxColburn DeanJoshua DeluciaNicholas DozierMolly DugginsSaeed EldwikLaura FarrellMali FrayOlivia GentrySarah GoldbergNicholas HarringtonEmmajean HearringChristian HernandezChristopher HollandWilliam HolmesN’Autica HolmesDonovan JonesAiden KnightEmily KouderEmily LanningMia ManciniBella MartinTempest McKenzieBen MeckmanMolly MinnickNova MorrellSean NewhouseAidan O’ConnellTanner PedenHogan PressleyCameron PribisJonathan RobertsOlivia RyanJose SalazarMichael SavingAbigail SchaadBenjamin SeagrovesCarson ShadeLuke ShoreWilliam SipeSkyler VanattaNickolas VlasatyRobert WalkerShayla Walters

Nevin WerntzEmily WilsonPeyton WithrowLindsey WoodardAlyssa Yorty

APRILByanca AlvoradoBianca AmayaPaul BlowJames BrandenburgTaylor BunchKelley BurrowsVeronica BuskeyBrandon CastellanaMilagro CastilloMika ChristiansonRussell CogliatiRobert CookseyChristopher CorbinElla CoulterDarryn CoyleWilliam DanielsRyan DavisJared EngelstadDustin FaulknerHunter FioraChristian FlaggFelipe FrancischineNoah GladsonIan GregoryJacob GumpperWilliam HagenKerry HagnerVictoria HallAlaina HarveyTaylor HighKevin IannucciKenny JenksJaime JuarezChristopher KunakDaniel LopezJake MayHunter MedlinCarter MoutonTanner OrtizShaina PachterCaroline PhanSummer RobinsonKendall RoyalRowan ShellenbargerAdam SicklesKatelyn SilvaJayde SimmonsRebecca TerrellBrooklyn TorreyKasey TreadwayEmma WatermanHeather WildeRumyana WojcikAllison WrightSam Younts

Sugg Farm, site of 2016 Buddy Walk on Oct. 9.

SaturdaySaturday AprilApril 1616th th 1111amam--22pmpm **

In an effort to better educate not only residents of North Carolina, but the state’s health care profes-sionals as well, the state’s Depart-

ment of Health and Human Services will soon launch a new website to provide a better understanding of Down syndrome.

“When a parent receives the news that their child has Down syndrome, the first words they hear should not be, ‘I’m sorry,’” said Donna Beck-mann, advocate and former TDSN vice president. “In 2016, families still receive condolences from health care professionals. In an effort to change that scenario, advocates across the country, as well as myself, have been working to ensure that accurate and up-to-date information about Down syndrome is provided. It should not be the worst day of their life when a parent hears their child’s diagnosis.”

The site — to launch this spring by the N.C. Department of Health and Human Services — is designed for both parents and providers, according to Lindsay Tipton, TDSN program director. The initial site will help new parents, and over time, it will evolve to provide access to resources and ma-terials about older children and young adults with Down syndrome.

“One of our main challenges is making sure new parents and provid-

ers have accurate information about what a life with Down syndrome is really like,” Tipton said. “Many think it is much worse than it actually is.”

Beckmann approached N.C. Sen. Mike Woodard recently to address the dissemination of what she called “draconian information,” and he suggested Beckmann go directly to the Department of Health and Human Services with a request to include up-dated, more helpful and more positive information. The DHHS asked her to form a Down syndrome stakeholders group, which included everyone from parents to researchers. The group worked months with DHHS staff, and initial pages will be ready to launch this month.

Life with a child with Down syn-drome should be filled with under-standing and optimism, Beckmann said.

UNDERSTANDING & OPTIMISMSTATE WEBSITE TO INCLUDE UP-TO-DATE INFORMATION FOR PARENTS, PROVIDERS

“Understanding that a parent is scared and uncertain about the future and optimism that their child, like any other, has great potential and to set high expectations to help their child reach that potential,” she said.

For more information, contact Beck-mann at dbeckmann@nc.rr.com

BREAKING DOWN BARRIERSAs parents, we want to advocate for

the value, acceptance and inclusion of our children. We all worry about and want what’s best for our children, but our reality is that we will have to fight harder than most to break down barriers put in front of my son Griffin by others.

There are many common stereotypes and misconceptions about Down syn-drome. The problem with these stereo-types is they are often based on outdated information and experiences, and can re-sult in assumptions about what those like Griffin can do or what he understands.

This is why it is so important to have resources like the DHHS and the soon to be launched Down syndrome website — a website that has been designed with input from the Down syndrome com-munity to educate and provide accurate, current and appropriate information to families and anyone interested in Down syndrome.

Plus they have a cute little guy helping advocate for a community that is sup-portive and will celebrate his successes and encourage him to do more.

Down syndrome has taught us what it is to love and what it is to accept. Aware-ness is about having an open mind and being willing to have what you think you know be challenged. Knowledge leads to understanding, which leads to an inclu-sive world. Not just for individuals with Down syndrome, or any disability, but for everyone.

— Christina Brewer, mother of Griffin (pictured on the cover)

TDSN PICNIC APRIL 30Join us for the annual Triangle Down Syndrome Network Picnic from 4 to 7 p.m. on Saturday, April 30 (rain date scheduled for May 1) at Preston Village Playground in Cary. The picnic is one of the most-loved TDSN activities of the year — families gather to meet for the first time or to catch up with longtime friends. Kids enjoy the huge playground and duck pond while the whole family enjoys the beautiful scenery, delicious shared food and great company. RSVP to RSVP@triangledownsyndrome.org.

If your last name begins with A-Q, please bring a main/side dish to shareIf your last name begins with R-Z, please bring a dessert to share.

Our mission is to provide educational, competitive, and

sustainable programs in the Triangle for children of all ages, races, genders, and income levels through soccer and education to encourage sustainable and healthy habits! We also welcome children with special needs with some physical limitations.

We offer three programs: • Hope Soccer for children with special needs with some

physical limitations.• Fútbol 4 All for children from low-income families with

an interest in improving their educational outcomes.• HOPE Community offers soccer clinics around the

Triangle.

Find us on online for more information:

Facebook at: Hope Project Fútbol Website at: http://hopeprojectfutbol.net/home-2/

Join us because all kids can be an

athlete!

If you’re interested in learning more about our

programs, contact:

Executive Director: Coach Martin Rodriguez-

Arispehopeprojectfutbol@gmail.com

Tel. 888-706-0660

Our current needs include raising funds in order to launch our programs fall 2015 and enrolling student participants. Please join us in our journey to make soccer possible for

ALL kids.HOPE Project Fútbol is a 501(c)(3) non-profit organization.

MESZLER PHOTOGRAPHY, A FRIEND TO TDSN

Patricia Meszler is a local photog-rapher with a heart for giving back. When she launched her own busi-ness, she knew that this would be an integral part of her plan, and as a friend of a parent of a child with Down syndrome, Patty chose TDSN as a local organization that she wanted to support.

She has made generous monetary contributions to TDSN as well as supported us with photography at events such as the Buddy Walk and Party and Pics with Santa. We ap-preciate all Patty has done for our community and highly recommend her for your photography needs!

When you book a session with Patricia Meszler Photography and mention TDSN, you will receive two complimentary digital files. A percentage of your fees will be donated back to the Triangle Down Syndrome Network.

If interested please reach out to Patricia Meszler at patriciameszler.com or (919) 749-4144.

SUPPORT THE GENIUS HOUR!Taylor Martin is an eighth grader

at Mills Park Middle School. In her language arts class, they are doing a project called Genius Hour.

Genius hour is an initiative where students are allowed one hour per week to do any project that means

something to them. Taylor decided to do a project called the Purple Let-ter Project. She has created a web-site to collect personal stories about kids with Down syndrome. She will then send the kids personalized letters based on their stories.

You can submit your child’s story

at www.purpleletterproject.wee-bly.com or email Taylor directly at tgmartin@students.wcpss.net.

Thank you, Taylor, for your interest in supporting our community!

MARCH7 Post-secondary education — Wake Tech, 6:30 p.m. at the TDSN office

9 Marbles Family Fun Night scheduled for 5:30 to 8 p.m. at Marbles Kids Museum on down-town Raleigh. The event is free.

14 Triangle Down Syndrome Network board meting, 6:30 to 8 p.m. at the TDSN office

16 Meeting for the 2016 Buddy Walk, 6:30 to 8 p.m. at the TDSN office

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

21 World Down Syndrome Day Family Event at Kings, 6 to 8 p.m. The even is free and includes bowling, games and pizza

APRIL6 Making Inclusion Work, 6:30 p.m. at TDSN Office.

14 Mom’s Night Out at the Ni-block home in Durham, 6:30 p.m.

16 The Learning Program, 10 a.m. to noon at Colonia Baptist

16 Brooks Avenue Special Needs Carnival, 11 a.m. to 2 p.m. at Brooks Avenue Church of Christ

30 TDSN Picnic, 4 to 7 p.m. at Preson Village Playground.

CALENDAR MARCH/APRIL 2016

Making Inclusion Work April 6th, 6:30-8:30 PM

1012 Oberlin Road, Raleigh (Suite 300)

What does true inclusion mean? How can schools include students with disabilities in

general education classrooms? What are the benefits of inclusion? What can we do to promote successful inclusion?

Bringing with her 25 years of experience with inclusion as an education professional and parent, speaker Orah Raia will discuss the answers to these questions and share first-hand examples of inclusion from elementary through high school.

RSVP by contacting:

info@ncinclusiveeducation.org 919-578-3006

Sponsored By:

Advocates for Inclusive Education (AFIE) Triangle Down Syndrome Network www.ncinclusiveeducation.org www.triangledownsyndrome.org

TRANSITION FAIR 6:00-8:00pm

March 8, 2016

Green Hope High School

Commons Area Local agencies will be passing out information

and answering questions about summer programs and after high school options

Lead a Movement

CHANGE

Yout h w i th D ISA B IL I T IES

A ges 15 - 30

I n d e p e n d e n t L i v i n g

A p p l y t o d a y ! D e a d l i n e 0 3 / 1 5 / 1 6 ONLY 20 ARE SELECTED

Accommodations provided upon request

Youth Leadership Forum www.ylfnc.org

Oppor t un i t y t o ge t i nvo lved

s t at ew ide and nat i ona l l y Learn

YOUR History

June 13 -17 , 2016

M A K E

Apply online at: www.ylfnc.org

Or call: (919) 833-1117

Or e-mail us at: ylfnc@live.com

Stand Up Speak Up

Apply for this FREE leadership forum: One week on NCSU campus

in Raleigh, learning, living, advocating, growing together.