Connections - Down Syndrome Guild of Greater Kansas City

DSG Donates $5,000to NDSS National PolicyCenter EffortsDSG believes individuals with Downsyndrome need strong representationin Washington DC. The NDSS NationalPolicy Center provides year round advocacyon Capitol Hill to insure legislatorsare knowledgeable about current issuesfacing people with Down syndrome,their families and the professionals whosupport them. DSG was pleased topresent a $5,000 donation to Jo AnnSimons, NDSS Board Chair, at theForecasting the Future Conference.Volume 18 Issue 2 March/April 2011Celebrate World Down Syndrome Day on 3/21World Down Syndrome Day was established to focus attention on the value and potentialof children, teens and adults born with the chromosomal anomaly also known as Trisomy21. March 21st has been designated by Down Syndrome International as the day to bringawareness to individuals affected by the condition. This is a wonderful opportunity forDSG members to educate family and friends and to celebrate and thank those individualswho support their loved one with Down syndrome. Please consider one of the followingsuggestions as you consider your World Down Syndrome Day celebrations:• Dress Down for Down Syndrome Day: Host a casual dayat your school, work or civic group. Ask for a small donationand provide DSG materials to those who participate so theywill be educated. Request a kit from DSG to help you host asuccessful day.• Peer Presentation: Provide a 15-20 minute overview of Down syndrome to students inyour child’s grade level. DSG has kits and presentation materials to help you!• Nominate an individual or organization for a DSG Excellence Award: DSG wants tocelebrate the champions in greater KC who are supporting our members. Complete thenomination form on page 10 of this newsletter and remit it by March 10 th . DSG will spendWorld Down Syndrome Day driving around and surprising people with awards!• Send a thank you note and update about your loved one to your physician: Contactyour pediatrician, OB/GYN, therapists and send a thank you note with an updatedpicture and story about your loved one’s progress and achievements.Dad’s Corner/President’s Letter/Buddy Walkon Washington Advocacy 2-3Community Group Listings 4-5MOGAC Ad/Paul Mesner Puppet Production/Eagle Scout Award/DADS Events 6-7Take Me Home Program/Kitchen Classroom/Lose the Training Wheels Camp 8-9Commitment to Excellence Award/STARS Program Calendar 10-11Adults with DS Initiative/SAGA Group/plus15/DS 101 Trainings 12-13First Downs for Down Syndrome 14-15

DSG Mission:The Down Syndrome Guild ofGreater Kansas City is a 501 c 3nonprofit organization whosemission is to provide support andresources for individuals withDown syndrome and their families.DSG seeks to provide the entirecommunity with information andeducation to broaden awareness andfoster positive attitudes regardingpeople with Down syndrome.Kristin BechtelKansas City, MissouriJo Ann ButaudShawnee, KansasBrian CowleyParkville, MissouriTerry LeeOverland Park, KansasMarleen LeonceKansas City, MissouriJawanda MastOlathe, KansasBridget MurphyLeawood, KansasTravis PalangiOlathe, KansasJoe RoosKansas City, MissouriScott ThompsonLeawood, KansasDoug WagerKansas City, MOTom WagstaffMission Hills, KansasConnections is a bi-monthly publication ofthe Down Syndrome Guild of Greater KansasCity. Please contact the office at (913)384-4848 if you have any questions aboutthe contents of this newsletter or would liketo contribute an article.Disclaimer: The information provided is done sothrough a variety of sources including names providedby members of DSG, networking, referrals by professionals,other agencies, mail advertisements, etc. DSGcannot attest to the quality or qualifications of the individualsor organizations described. We encourage you tobe a wise consumer and ask questions in order to makeyour own independent evaluation of utilizing the servicesdescribed. We share information about researchprojects but in doing so, it is not reflective of any type ofendorsement.On March 20 th , 2008 God blessed our familywith a beautiful daughter Sophia. Sophiamade a grand entrance coming into the worldlooking like a boxer on the losing side of a longhard match. My wife and I only got to seeSophia for a brief moment before she waswhisked off to the neonatal intensive-care unit.No, it can’t be…there must be a mistake…thiscan’t be happening to us…what are we goingto do??? These were some of the manythoughts running through my head when thenews was given to us that Sophia had Downsyndrome. It was a very surreal moment. Neithermy wife nor I knew anything about Downsyndrome and I could only think about how ourlives were going to be very different from whatwe had dreamed. I remember family andfriends telling us, “God wouldn’t have givenyou this beautiful child if you couldn’t handleit”.I am a little embarrassed to admit this but atthat time I wasn’t as sure about myself as familyand friends were. I had doubts about beingable to rise up to the challenges we were goingto face of raising a child with special needs. Iwas relieved to find out later that the emotionsI had were normal for parents of children withDown syndrome. And, within a short period ofhaving Sophia in our lives the doubts began tovanish by an overwhelming realization of howmy family and I are so blessed to have Sophiajust as she is.Sophia has had multiple eye muscle surgeriesto correct strabismus and cataract removal inboth eyes. Before Sophia, I never imagined aneight week old child requiring contacts or whatit would be like to have to put them in hersmall delicate eyes. When Sophia was youngerit was a one parent operation. As she grew andgot stronger it became a two parent operation.One of us holds her down and the other opensSophia’s eye with one hand and gently placesthe contact in with the other hand. Now mywife and I are old pros at it, an acquired skillnot appreciated by Sophia.Everyday we give Sophia thyroid medicine. Theeasiest way to get her to take it is enlisting theassistance of her older brother, Taylor. If he isclapping and cheering, Sophia will eat justabout anything. At times I wonder what wewould do without his help. Sophia absolutelyadores her big brother. When he isn’t home,she walks around the house calling his nameand is determined she is going to find him.“Sophia brings incredible peopleinto our lives. DSG has beenamazing for our family!”By the time Sophia was six months old she hadseen more doctors than I have my entire life.Keeping track of all the resources, doctors,appointments, treatments, events, etc. is initself a challenge. Fortunately I have an amazingwife, Heatherand she diligently put togethera binder to keep track of everythinggoing on. It’s I have no doubt our daughter isachieving the things she is because of the tremendoustime and effort my wife has put intoher therapy and playtime.Sophia brings incredible people into our lives.DSG has been amazing for my family. Theycalled us at the hospital and offered us supportright away. They provide resources, a path ofaction, hope, encouragement and friendship.Over the past few years we have made manynew friends through DSG. It is fantastic to talkwith other parents going through the samechallenges of raising a child with Down syndrome.We love attending DSG events throughout theyear and supporting fundraisers organized byFirst Downs for Down syndrome, especially the“Step Up Walk”. I have been active with Dad’sAppreciating Down syndrome (D.A.D.S.) groupmeetings and have established great newfriendships from it. If you are a new Dad orhave not been to a D.A.D.S. meeting, youshould definitely come check it out.Nothing in life is more enjoyable and rewardingthan seeing your child accomplish a goal ordevelopmental milestone. I can’t wait to seewhat Sophia will accomplish in her lifetime!Submitted By: James Sanders

President’s LetterDear Members:I write this as I sit on a plane traveling home from WashingtonD.C. and a day of advocating for my kid and yours onCapitol Hill. Your support allows for a team from Kansas Cityto travel to D.C. once a year for a national day of legislativeadvocacy.Our team included Lee Jones. Lee is an adult with Downsyndrome who holds a college degree, driver’s license, thekeys to his own condo and a brochure outlining his publicspeaking services. Lee is also a lot of fun as a traveling companion.It was an honor to watch him represent everythingthat is good about having Down syndrome.I couldn’t help but wonder what my 19-year-old Jack Murphywould have said to the congressmen and senators if he weregiven the chance. Here are a few scenarios that come tomind.“I am visiting you today because I want to live on my own.Your federally funded housing lacks hot tubs and man caves.Could you look into that for me?”“Last week I went to the ATM machine to withdraw somemoney. The screen said that there was not enough money inthe account. I am quite sure my disability caused this socould you look into sponsoring a No Zero Balance bill? If outof control spending is good enough for Uncle Sam, it’s goodenough for me.”“Parental rights are a problem. Could you eliminate those? Ihave the right to life, liberty and the pursuit of happiness.”“My shoe size is 7.5. There are very few places one can buy7.5 size shoes. Men’s socks fit shoe sizes 8 to 12. A referendumrequiring the Big and Tall shops to recognize me as aconsumer would be helpful. ““I attend a state university. Surely there are federal matchingfunds for state universities. Could you put the squeeze onmine to start classes after 10:00 am? It is a metabolism issue.”“Currently, on-line dating services are not regulated. Privacyon those sites can be compromised. I know because I nevertold my parents about mine and they still shut it down.”“Well Senator, it’s been a pleasure. Let me know if you arein town. I might consider making an appearance or givingyou my endorsement.”The journey continues.Bridget MurphyYour fantastic fundraising efforts allowDSG to send representatives toWashington DC once a year to advocatefor our 1100 members.DSG Attends NDSS Buddy Walk on Washington to Advocate for 1100 MembersDSG’s Executive Director, Board President and a self advocateattended the NDSS Walk on Washington on February 8th. Wevisited with seven legislators and requested their support in thefollowing areas:• Joining the Congressional Down Syndrome Caucus• Supporting the Achieving a Better Life Experience Billwhen it is reintroduced during this session of Congress• Asking the National Institutes of Health to improveresearch funding for Down syndromePlease watch for DSG action alerts regarding policy initiativesthat require your support. We need you to contact your legislatorsto insure a bright future for people with Down syndrome!DSG met with Senators McCaskill, Blunt, Roberts and Moran.We also met with Representatives Jenkins, Carnahan and Graves

The DSG proudly serves a largegeographic area and therefore providesadministrative support and funding tothe advertised community groups tohelp meet our members needs in theirimmediate communities.DSG members are encouraged to attendgroup meetings in their area but mayalso choose to attend other groups if thetopic matter/event interests them. Pleasecontact us at info@kcdsg.org if youwould like to suggest a new groupAfrican American FriendsWe happy to announce Yinka Perryas the NEW leader for AfricanAmerican Friends. Yinka is preparingmeeting information for thecoming months. Until then pleasefeel free to contact Yinka atdsg.aafriends@gmail.com. We lookforward to seeing you at AfricanAmerican FRIENDS events in 2011.B.E.S.T. NetworkEvery Thursday from 6:30 to8:30pm, join us for Dance classes–From Hip Hop to Ballroom,Drama, Sign Language to Musicand other Activities. All levels oftalent welcomed, beginner, intermediate,and challenge. Call forfee prices.1st and 3rd Saturdays of themonth, from 3:30 to 6:00pm,Starring ME! Entertainment Club!Friends, Fun, and Food! We willenjoy Karaoke, Music Videos,Group and Line Dances. Entrancefee $7 or $10 for entrance fee anddinner.All Meetings held at BishopMiege North Campus, 4901Reinhardt Dr., Roeland Park, Ks.We are in the 2nd building in themulti-purpose room, just north ofthe High School, through thenorth doors. To RSVP or questions,please contact Marlene,913.663.9936 or email at bestnetarts@earthlink.netCONECTANDO AMIGOS LATINOSEstamos muy contentos de anunciarun nuevo grupo latino, "ConectandoAmigos Latinos",para nuestras familiasque hablan español. La reuniónserá el Viernes 25 de Marzode 6:00 pm a 8:00 pm y se llevará acabo en la Oficina de DSG, 10200 W75th St, suite 281 en Shawnee Mission,Kansas. Hemos invitado a unpsicólogo que dará consejos sobrecomo lidiar con los días buenos ymalos cuando se está al cuidado deun niño con Síndrome de Down. Esperamoscontar con su presencia.Viernes, 15 de abril, 6 pm a 8 pm,nuestro encuentro en la oficina delDSG. Hemos invitado a un representantede YMCA a unirse a nosotrospara hablar sobre las actividades quese llevan a cabo para los niños connecesidades especiales. Hay bocadillosy refrescos serán proporcionados.Dotte FRIENDSFriday, March 4th from 6:30 to8:30pm. Come join us for a familygame night. Bring your favoriteboard games and snacks and comeready for some fun. We will meet atDown Syndrome Guild office at10200 West 75th Suite 281 ShawneeMission KS.Mark your calendars for the EasterExtravaganza on Saturday, April 9th.We looking for more families to joinDotte! Contact Becky Messler forinformation and Please RSVP onboth events, 913-788-9013 or 913-940-8512 or via email atabecky529@kc.rr.com.Eastland FRIENDSMonday, March 14th, 6:30pm to9pm, MOMS MONDAY! Meet at2505 SW Wintercreek Drive in Lee’sSummit, MO. Bring a snack and/ordrink to share. If you have a favoriteparty/board game bring it too!Sunday, April 10th Swim Party atCoCo Key Water Resort at the HolidayInn KC, 103 East 39th Street,KCMO. We have 20 ticket for KIDS toGIVE AWAY, DSG member and siblingsonly please! Parents can purchasetickets for themselves or familyand friends for only $10 each. This isa special reduced rate! YOU MUSTEastland FRIENDS ( con’t)Send your check or cash to DSG byApril 1st. Children 2 and under arefree into the Park. The Water Park isopen from 10am-8pm, you may pickup your tickets before the event, inorder that you can come at a timethat works for your family. The ticketsare for all day.RSVP or questions contact KimKnipp at kknipp@kc.rr.com or LindsayTharpe RSVP to Lindsay atmamalins@hotmail.com.FACES of OlatheOlathe FACES needs some NEWFACES to join! For detail about thisgroup and Information on upcomingevents, please contact DebbieHorn via email Debbie@horns4.comor at 913.768.6717.FRIENDS of JoplinThursday, March 3rd at 6pm.Join us for Mom's Night Out at RedOnion in Joplin. Joplin FRIENDS willpay $5 toward each Mom’s dinner.RSVP by March 1st.Saturday, April 2nd at 2:30pm.Mark the calendar for our AnnualEaster Party at the Coate FamilyHome, 2120 N. Duquense, Joplin,Mo. Bring a dozen filled Easter eggper child and a snack or dessert toshare. RSVP by March 31st.Contact Alicia for questions andRSVP’s, alihammer@sbcglobal.netor via phone 417.499.4614.Johnson County FRIENDSMonday, March 21 at 6:30 pm.join us for a Ladies Night Out at Barley'sBrewhaus,16649 MidlandDrive, Shawnee, KS. We have theloft area reserved so we can movearound and chat easier. JoCoFriends will pay $5 per each person'stab. Watch your email for an evitecloser to the time of the event!Thursday, April 14th at 6:30pm.We will start with dinner followedby our speaker at who will be announcedat a later date. Watch youremail for an evite closer to theevent. Babysitters will be provided.RSVP to events or for questionsemail at debopks@gmail.com.

Lawrence Topeka FriendsWatch your mailbox or email forinfo on Oral Health: Birth toAdult, presented by JackieLeakey from Oral Health Kansas.Date and time to be announced.More information contact Annat richard-anne@sbcglobal.netor 785-354-8243.Northland BuddiesFriday, March 18, from 6pm to8pm. Join all your NorthlandBuddies for another fun night atour 3rd. Annual Fun Run Night,1919 Industrial Dr. Liberty, MO.Fun Run has several inflatables,an Imagination Village to play in,a small arcade and a specialplace for our little buddies toplay. There is also a snack bar foryour convenience. Your childneeds to bring a pair of socks toplay in. If you plan to join thefun, please RSVP by March 16have your child with Down syndromeand sibling covered!Saturday, April 16 from 10amto 1pm. It will be our First AnnualEaster Party at North CrossUnited Methodist Church, 1321NE Vivion Rd., KCMO. NLB andNorthCross guest will share anoutdoor Easter Egg Hunt,weather permitting, snacks,games and crafts, and tons offun! Please plan to bring 2dozen filled Easter eggs to shareand your own basket. RSVP byApril 14 . Kris Plubell at 816-792-4671 or kdkb@plubells.com forboth events.Rural Missouri FRIENDSSunday, March 6th 2pm-4pm.Gymnastics Studio of Y aboveBrookfield Physical Therapy onMain Street in Brookfield. Gymnasticsand dance fun for ourkids!!! Birthday treats to followfor Ms. Jael Head! For questionsplease contact Kathy McCurry,660.258.7204 or emailkmccurry@shighway.comSt. Joseph Community GroupSunday, March 20th 2pm to3pm. First Baptist Church, 500 EPawnee St, Savannah, Mo. MaryRingot, reading specialist andmother of a young adults withDown syndrome, presents informationon promoting reading inchildren with Down syndrome.Feel free to bring your children,we will have some activities forthem in another room.Saturday, April 30th at11:30pm. Join us for lunch at-CiCi’s Pizza, 2207 N Belt Hwy. Thegroup will pay for the cost oflunch. RSVP to events withStephanie, 816.364.0003 ormef4ds@stjoelive.com.Sibling Support GroupThursday, March 10th, 7 to8:30pm. At the DSG office, 10200W 75th St., Ste. 281 in ShawneeMission, KS. If you are caring foran adult brother or sister who hasDown syndrome, then this groupis for you! Don’t miss your chanceto meet other siblings who are orwill be primary care givers. ContactSarah Jurcyk, 913.677.1213 orsjurcyk@kc.rr.com. You are welcomedto bring your sibling withDown syndrome to any upcomingmeeting.Teen ClubTEEN CLUB is waiting for you!Anyone from the ages 13 and upto adults are welcomed to joinus.Typically events are held on the4th Saturday of the month.from 10am to 2pm, at TimothyLutheran Church, 425 NW R.D.Mize Rd, Blue Springs, Mo. Marchwill probably be an indoor carnival,along with cooking up somefun and tasty lunch. ContactDiane Schiefelb.ein, 816-229-2034or email dianesingsforjoy@comcast.netfor more informationabout detail of upcomingevents Look for us on Facebook,search Teen club (for teens andadults with disabilities).

DSG Member Stars in Paul Messner ProductionOur family has always enjoyed Paul MessnerPuppets productions. We have includedThe Nativity as part of our holidayseason Christmas celebration. It's a magicalexperience and some performancestake place in the dark.Calum has been so mesmerized by thestory and its telling, that for two years hepersisted in wanting to be the donkey.We have the DVD of The Nativity,which Calum has watched so many timesalwaysinsisting that he is the donkey.After telling Paul Messner this story,and asking whether there is any possibilityof Calum participating, Paul warmly andenthusiastically encouraged me to speakwith their executive director and get therehearsal times on our calendar. In short,Calum was invited to be a part of theshow!The Nativity story is told with puppets thatare larger-than-life figures worn like costumeswhich move to the accompanimentof voiced parts and musical interludes.There are angels on high andsheep under foot, camels and wise menand biblical figures. The prophet Isaiah isabout twelve feet tall! Calum wanted tobe the donkey. Then he wanted to beJoseph. Then he suggested the ox.“The people associated with The Nativitywere wonderful and welcoming,and embraced Calum as a fulland important part of the cast.”Many of the parts are particular in theirtiming, so we all determined that Calumwould do well as a sheep, since sheepmove in flocks and he would have friendsto help him that way. Sheep also haveshepherds, a good thing for a kid with lotsof enthusiasm and not much sense of direction!Calum was a sheep, and as his mother, Iwas proud to hear him "Baaaaa" his wayup the aisles. He did catch some of us bysurprise, though, when in his deepeningvoice he came up the aisle "BaaaaaaBaaaaaa- Hi, Mom-Baaaaaa."We had Sunday through Thursday rehearsalsand five performances over threedays. We had the challenges of transitions,of "Where's Calum?", of his insistencethat he wanted to watch the showrather than stay hidden in the back.Through it all, the people associated withThe Nativity were wonderful and welcoming,and embraced Calum as a full andimportant part of the cast. Calum wantedto go, wanted to be a part of the show,and reveled in being a sheep. And whenwe performed the first show for a sold-outpacked house of 590 people (mostly kidsitwas a Friday morning), it was thrilling tobe a sheep (Calum) and an angel (Mama)and to hear the giggles and the "Ahhhh!"from all in the audience.Calum is already talking about next year,happy to be a sheep but keeping his eyeon the part of the donkey. As he grows,and as his voice deepens, I wonder if hewouldn't be better as a sheep dog?Submitted By: Machrina Blasdell

DSG Member Earns Eagle Scout AwardAt 7:30 PM on Monday night, December 27, 2010, DanielCamacho sat in an Eagle Scout Board of Review composed ofadult scout leaders from his Scout Troop and local District ScoutCouncil. It was the last requirement he had to meet on the trailto becoming an Eagle Scout. Michael, one of his older brothers,and an Eagle Scout himself, was given permission to sit with himduring the Board of Review as a "friend of the scout."After the Board finished questioning Daniel, he and Michaelwere ushered out and sat with other family members awaitingthe decision of the Board. His mother, Linda, and I are proud toannounce that at around 9:00 PM we were informed that Danielhas met all his Eagle Scout requirements and is now officially anEagle Scout.Daniel has been a Boy Scout for the past seven years. He is aBrotherhood member of the Order of the Arrow, and a Warriorin the Tribe of Mic-O-Say. He has camped with his troop everymonth (with very few exceptions) since becoming a scout, attendedan extended summer camp every summer, and hasearned 37 merit badges (only 21 are required to become an EagleScout). Nationally, only 2% of all boys who start Boy Scoutsgo on to attain the highest rank of Eagle Scout.For his Eagle Scout project Daniel designed, and with the help ofscout volunteers, built two stand-alone shelving units in one ofthe storage rooms located to the left of the altar in his church,Holy Trinity Catholic Church. The room is used for storage ofequipment and supplies used for the various religious churchservices. One unit measures 15 feet in length, 6 feet in height, 3feet in width, and has two shelves. The second is 6 feet inlength, 4 feet in height and 2 feet wide. Both are attached tothe storage room's interior walls for stability.We are, to say the least, as proud of Daniel on the occasion ofthis significant accomplishment as we were when his three olderbrothers became Eagle Scouts. The fact that Daniel has Downsyndrome, yet never quit on his pursuit of this goal, speaks volumesabout his extraordinary dedication, spirit, and courage. Heis a true Eagle Scout in every sense of the word.Submitted By Proud Parents of Daniel,Mark and Linda CamachoWords of Wisdom from DADSWho Have Been There, Done That!DSG 10200 W. 75th Street Suite 281Shawnee Mission, KS 66204February 17, 20106:30 - 9:30Fathers of teens and adults with DS willshare their stories and answer yourquestions about what the future holds.Dinner and childcare provided by DSG.RSVP for DADS eventsto Kevin Hight atkhight1@yahoo.comLearn more about theDADS KC group:www.dadskc.orginfo@dadskc.org

Johnson County Offers Take Me Home ProgramThe Take Me Home program is a database maintained by theJohnson County Sheriff's Office Communications Division foradults and children who may have difficulty communicatingdue to a developmental or cognitive disability. This database isonly accessible to law enforcement personnel.The database includes a picture, disability information, physicaldescription and emergency contact information for all registeredindividuals. If a person in the Take Me Home program isencountered alone by a police officer, or is reported missing,the officer can access the database by the person's name ordescription to locate their information. With this information athand, the officer can appropriately assist the personThis is a FREE service offered to developmentally and cognitivelydisabled citizens who live in cities that are dispatched bythe Johnson County Sheriff’s Office. This program is currentlyavailable in the cities of:• DeSoto• Lake Quivira• Roeland ParkWe ask that anyone enrolling an individual is either a familymember, legal guardian or is turning in a signed registrationform on behalf of the individual's family with their permission.Individuals who do NOT qualify for enrollment include peoplewith ONLY physical disabilities, hearing impairment, vision impairment,anyone who can communicate via translator/interpreterand children who have not reached a developmentallyappropriate age for speech.• Edgerton• Fairway• Gardner• Merriam• Mission• Olathe• Rural JO County• Spring Hill• WestwoodOnline you will find downloadable information about the programand how to register an individual. You will also find aregistration form that you may download and fill out to bringto registration if you wish. This information will not be availableon the Johnson County Sheriff’s Office so please visit the websiteat: http://www.jocosheriff.org/Index.asp?incl=tmhWho can enroll in Take Me Home?Any adult OR child who may have difficulty communicatingdue to a developmental or cognitive disability, while lost or inan emergency situation. These individuals tend to be at risk forwandering and may include people with disabilities such asAlzheimer's, Autism, Dementia, Down Syndrome etc.For any further questions, please contact the Johnson CountySheriff's Office Communications Division by phone at 913-782-0720 or e-mail at shr-disptakemehome@jocogov.org.Deputy Alison AndersonJohnson County Sheriff’s Office, Communication DivisionNew Book Teaches Cooking to People with Down SyndromeCooking offers children with autism, Down syndrome, andother developmental disabilities a multitude of opportunities tolearn and improve their communication, motor, sensory andsocial skills. The Kitchen Classroom shows how teachers, providers,parents and friends can make cooking a rich-learningexperience.This book includes sections about the process of cooking withyoung children with developmental disabilities, ingredient listswith step-by-step directions and photos of each of the prepareddishes. The Kitchen Classroom also includes a CD-ROM,where the same recipes listed in the book are presented in aformat that is designed for the child to use. With tasty, easy-topreparerecipes for Funny Face French Toast, ABCSalad and many more appealing Gluten Free CeliacFriendly dishes, this unique cookbook helps childrenwith their development and life skills, while teachinghealthy eating habits that can last a lifetime.Check this great resource out from the DSG lendinglibrary to help your loved one with Down syndromelearn to cook independently.You can also purchase the book online atwww.woodbinehouse.com

Researchers indicate test resultsprovide a "developmental trajectory"or profile of those withDown syndrome. They provide amore accurate picture ofcognitive strengths and weaknessesand can potentially help inidentifying appropriatetreatments and interventions.Space is limited! Contact DaveKrug at dkrug@jccc.edufor more information.

DSG is celebrating World Down Syndrome Day on 3/21 by recognizing community members who give dedicated service to individualswith Down syndrome and their families. Do you know of an educator, physician, employer, therapist or other serviceprovider that is going above and beyond? If so, we hope you will remit a nomination so DSG can recognize this person or organization.We have fun prizes planned and will be making special deliveries on 3/21 to celebrate our award winners. Pleasecomplete and remit your nomination by March 10, 2011 for consideration.Commitment to Excellence Award NominationName of Nominee:Nominee Address:Nominee Phone:Nominee’s profession:Nominee City, State, Zip:Nominee Email:How long and in what capacity have you known the nominee?How does the nominee exhibit excellence in serving people with Down syndrome and their families?Has this nominee been recognized for their great work with people with Down syndrome in the past? If so, how?Submit nominations tothe DSG by March 10, 2011:Down Syndrome Guild10200 West 75th StreetSuite 281Shawnee Mission, KS 66204Fax: 913-384-4949Email: info@kcdsg.orgName of person nominating individual:Address:Phone:Email:Name of person with Down syndrome served by nominee:

STARS Program UpcomingEvents for March/AprilThe STARS program is for teens with Down syndrome who are 12-18 years old. Our focus is on social, prevocationaland life skills which will help our teens prepare for adulthood, employment and independent lifestyles. Emailinfo@kcdsg.org if you would like to be added to the STARS activity email list.Please visit www.kcdsg.org and click on ‘Calendar’ for complete details on upcoming STARS activities. Unless otherwisenoted, STARS activities are typically held in the DSG Center on Wednesday evenings from 6 – 8 PMMarch 2011March 2 nd Movie Night at the OfficeMarch 11 th Spring Fling Dance at Parkville Athletic Center 7 PM-9 PMMarch 14 th , 16 th and 18 th Spring Break Camp -Details will follow in separate mailerMarch 23 rd Cultural Awareness Night—teens bring their favorite foreign food to share!March 29 th Rockhurst Bowling at Ward Parkway Lanes 3:30 PM-4:30 PMMarch 30 th Self Defense ClassApril 2011April 6th PowerPlay ***Transportation provided from DSG office***April 13 th Hannah Montana Movie and Game NightApril 20 th Yoga & Healthy Relationships with MOCSAApril 27 th Kickball and snacks ***Transportation provided from DSG office***April 26 th Rockhurst Bowling at Ward Parkway Lanes 3:30 PM-4:30 PMApril 30 th Lunch with Friends at Blue Moose in Prairie Village *** Transportation provided fromDSG office***Transportation OptionsDSG is establishing increased transportation options for STARS activities. Our intent is to offer occasional pick up/drop off at locations throughout the metro for some activities. If you are interested in learning about transportationoptions for STARS activities, please visit www.kcdsg.org and click on ‘Calendar’. Transportation information will beavailable by viewing details for STARS activities; these details will also be provided in periodic mailers advertisingSTARS activities throughout the year.Quarterly Lunch with FriendsThe STARS Program will now offer a quarterly “Lunch with Friends” on Saturdays at varying locations throughoutthe metro. These lunchtime opportunities are intended to reach outlying areas of the Kansas City metro, increaseparticipation in the program and promote new friendships among those eligible for the STARS Program.Inclement Weather PolicyAs we move through winter months, please be advised the STARS Program maintains an inclement weather policy.STARS activities will be cancelled on dates when the Shawnee Mission School District cancels school due to inclementweather. We reserve the right to cancel activities if SMSD has school but our staff feel the roads are unsafe.ContactTo RSVP for an upcoming STARS activity please call 913-384-4848 or email info@kcdsg.orgTHANK YOU PLATTE COUNTY BOARD OF SERVICES!Platte County Board of Services for the Developmentally Disabled recently provided a $5,000 grant to fundexpansion of the STARS Program into the Northland area!

New Initiative Focuses on Adults with Down Syndrome and FamiliesLast month, DSG launched an exciting new initiative in caring foradults with Down Syndrome – and their siblings. Adults who foundthemselves caring for their adult brothers and sisters with DownSyndrome approached DSG for support. A community group calledSiblings Are Great Advocates (SAGA), was formed so siblings couldshare information and resources.SAGA founders, noted that siblings had taken over guardianshipwhen the parents died or were no longer able to handle the responsibility.The siblings with Down Syndrome were in their mid-40s onup, and each was exhibiting the accelerated aging symptoms uniqueto Down Syndrome. The SAGA team relied on each other for thelatest news of the limited medical studies defining the connectionbetween Down Syndrome and Alzheimer’s.The SAGA team approached the Down Syndrome Guild, which wasreceptive and already at work identifying needs of older clients andtheir families. Bridget Murphy, Board President of DSG, vowed action.The first meetingIn addition to four members of SAGA and the DSG leadership, therewas strong interest from the community, with participation of:Legal issues: Questions of guardianship and rights of siblings cameto the forefront; families need to understand the potential minefieldsand prepare for them.The ultimate goal was crystallized by Murphy, who quickly scribbleda sign: “January 2017” – a target date for groundbreaking on a newCenter of Excellence for supporting adults 30+ with Down Syndromein Kansas City.Action plansWith opportunities clearly in sight, the group committed to action.Regular meetings are scheduled at the DSG offices monthly to stayon course. Members brainstormed to identify additional stakeholders– others in the medical community, community service providers,other government agencies. Other actions include gathering moreinformation about the potential needs in our region, and buildingawareness for the issues and SAGA.What you can do: Do you know siblings of an adult with DownSyndrome? Encourage them to contact info@kcdsg.org and join theSAGA group.• Larry and June Rouse, founders of The Mission Project, anon-profit providing educational, social and fitness opportunities,based in Mission, KS.• Dr. William Craig, President and CEO of Lake Mary Center,an organization providing residential services, treatmentand community support for developmentally disabled persons• Kirk Davis, program director at the Lake Mary Center residentialfacility in Olathe• Merlin Butler, MD, geneticist at KU with expertise in DownSyndrome• Jessica Hellings, MD, neuropsychiatry at KU, also with expertisein Down Syndrome• Heather Anderson, MD, and Anne Arthur, NP, both of theKU Down and Dementia ClinicThe meeting focused first on the identifying the key issues facing thepopulation, defined as adults age 30+ with Down Syndrome. Thefollowing issues came to the surface as needing to be addressed:Medical challenges: Need health care guidelines and education forfamilies, to monitor and understand changes; individual medicalsupport plans, including neuropsychiatric assessments. The groupalso identified the need for specialized medical care, building referralsand developing research, including exploration of links betweenDown Syndrome and Alzheimer’s, neurologic disorders and the remarkableabsence of solid tumor cancers.Family dynamics: Families need training and counseling to developbetter skills for dealing with emotional pressures, conducting crucialconversations and making tough decisions. The group also identifiedneeds for activities, respite care and a spectrum of placement options.Financial challenges: Families need help navigating social support,managing finances and long-term planning.

Down Syndrome 101 Trainings Help Educators/Childcare ProvidersDSG recognizes it can be stressful tosend your baby or young child withDown syndrome into a child care centerwhere they have no experience withthe condition. We are pleased to announcea new training that is nowavailable to educate childcare providers.Down Syndrome 101 for ChildcareProviders focuses on the commonmedical, social and communicationissues which babies and small childrenwith Down syndrome face. The manysimilarities between these children andtheir typically developing peers are alsoidentified.Childcare providers are shown a videoof teens and adults and what their lifeis like so they will appreciate that peoplewith Down syndrome have thesame goals, dreams and hopes. Propersupport in the center and strategies forworking with staff and parentsContact info@kcdsg.org or913-384-4848 if you areinterested in DSG facilitatinga Down Syndrome 101training in your child carecenter or school district.are shared to provide a good foundationfor open communication.Early intervention and working withtherapists is also explored.Down Syndrome 101 for Paraprofessionalshighlights social,communication, behavioral andmedical issues for people withDown syndrome which affect academiclearning.Strategies for encouraging independencerather than learned helplessnessare highlighted. Examplesof problem behaviors and how toalleviate them are discussed. Theunique learning profile of a studentwith Down syndrome is sharedalong with best practices for teachingand overcoming challenges associatedwith speech, memory, attentionspan and communicationissues.

A Special Thank You to Bank Midwest for TheirSupport of First Downs for Down Syndrome!First Downs for Down Syndrome was awarded $5,000 on Thursday January 27, 2011 at Blue ValleyNorthwest High School. Bank Midwest CEO, Tom Metzger presented the check to First Downs,along with Head Football Coach and team members.Thank you Bank Midwest! We appreciate your support!Pictured above from left to right:Thomas LeManske- Blue Valley Northwest Student, Cooper Lund- Blue Valley Northwest Student, Amy Stoll- First Downs forDown Syndrome, Mike Zegunis- Head Football Coach Blue Valley Northwest, Tom Metzger-CEO, Bank Midwest, JakeSwalley-Blue Valley Northwest Student & Caitlin Soder– Blue Valley Northwest Honorary Football Captain.First Downs for Down Syndrome teams with the Kansas City Chiefs Offensive Line to raise money for the Down SyndromeGuild, the Down Syndrome Clinic at Children’s Mercy Hospital and other Down syndrome organizations. Anumber of fundraising events are held each year to raise money and provide awareness of Down syndrome.Area Corporate Sponsors also support First Downs for Down Syndrome. We thank them for make for their generosity. For information regardingevents or other fundraisers, please contact Amy Stoll, Executive Director, at 913-722-2499 or email stoll@fdfds.org. You can also learnmore by visiting our website at www.fdfds.org

Fundraising Event Dates for 20118th Annual Private Cellar Wine Tasting &AuctionDate & Time: Wednesday April 13, 2011, 6-9 pmThank You for Your Support ofthe KFC/FDFDS Day!The September 16, one day event,raised over $10,000 for FDFDS!***********************************First Downs for Down Syndrome has teamedup with KFC for the past seven years. A special thanksto all area KFC locations and families whoDined Out for Down Syndrome!Shook Hardy & Bacon LLPJoin us for an evening of fun and great wine aswe celebrate those with Down syndrome. Tastewines from around the world & the opportunityto bid on unique wines from KC’s foremost privatecollectors.Pictured above:9th Annual First Downs Golf Classic!Date & Time: Monday July 18, 2011Registration at 10am with a shotgun start at 11amShoal Creek Golf ClubTake Monday off and enjoy playing a full day ofgolf. Create a foursome with your fellow coworkers,your best clients and or your friends.Lunch, dinner, drink holes, holes contests andso much more...Claudia Sanchez– KFC, John Thomas- FDFDS , Amy Stoll-FDFDS, Tim Deves-FDFDS & Jesus Romero– KFCCongratulations to all the 2010, high school participantsfor their participation in the FIRST DOWNShigh school program. Overall, this program raised$24,821 to support people with DS in Kansas City!Blue ValleyBonner SpringsCenterPleasant HillRaytownSanta FeAll proceeds benefit First Downs for Down SyndromeFIRST DOWNS High School Fundraiser!Summer/Fall 2011Hardin CentralKearneyLeavenworth High SchoolOlathe East High SchoolOlathe Northwest High SchoolShawnee Mission WestSmithvilleSt. Thomas AquinasGet your local high school involved in the FDFDSHigh School football fundraiser. Players raisepledges based on the number of first downs a teamscores in each game/season (or seek flat donations).Half the funds raised stay at the school tohelp the team and the other half go to FDFDS. Wehave letters, kits and materials available for you toshare with your high school.Host a Dress Down for Down Syndrome Dayat Your Office or Schoolto Benefit FDFDSDo you and your co-workers/friends like wearingjeans to work? Here is an easy way to be comfortableall day AND to also help those withDown syndrome. Help spread awareness anddisplay the many gifts and talents of individualswith Down syndrome by hosting a Dress DownDay! Call FDFDS at 913-722-2499 for info.

NON-PROFIT ORGU.S. POSTAGEPAIDSHAWNEE MISSION, KSPERMIT NO. 93210200 West 75th StreetSuite 281Shawnee Mission, Kansas 66204913-384-4848info@kcdsg.orgwww.kcdsg.orgRETURN SERVICE REQUESTEDDSG Easter EggstravaganzaApril 9, 20119:00 AM-12:00 PMKansas City Convention CenterBartle Hall Room 2215Bring the whole family and join us for a fantastic event which includesbreakfast, games, arts/crafts, door prizes and a visit with the EasterBunny! Don’t forget your Easter baskets and camera.Rachel Coleman of Signing Time will be our specialguest. She will entertain kids of all ages with a wonderful 45 minuteperformance and will also participate in a meet and greet to sign autographs.Signing Time materials will be available for purchase at theevent.