PACESETTER Fall 2009 Vol. 32, Issue 3 - PACER Center

A mother shares tips on how to talk to othersBy Marcia KellyExperience is the best teacher, asthe saying goes—and one of itsbig lessons is how to communicateabout your child’s disability. ForKathy Graves, the learning beganwhen her son Sam, then 1, was diagnosed with cerebral palsy (CP).“He was born on his due date andwas healthy,” she recalls. “Then hecontracted meningitis when he was aweek old.” At the time, Sam seemedto recover and was reaching all hisdevelopmental milestones. “But atsix months, he didn’t crawl,” Kathyremembers.Eventually, doctors discovered thatthe motor part of Sam’s brain hadbeen affected.“I remember well getting that diagnosis and thinking, ‘now what?’ Iremember not knowing who to call,who to tell, or how to tell it. There’snot a road map for you,” Kathy says.Sam is now 16. Over the years, experience has taught Kathy some important lessons about communicatingwith others about her son’s disability.As a result, she has developed a philosophy about whom, what, and howmuch to tell, as well as how muchenergy to expend on it. Here’s whatshe’s learned.Lesson 1: Find People You Trust“My husband and I started slowly bycalling people we could really trustand talk to without having to makethem feel good,” she says. “My sisterin-law and brother-in-law both workin special education, and they felt likethe right people to talk to.“We also learned early on that youneed people outside the family. Findthree or four people who are alwaysthere for you, without judgment;people you want to go through this Pacesetter – Fall 2009Kathy Graves first became acquainted with PACER by visiting its SimonTechnology Center, which she says has been very helpful for Sam (above).with,” she says. “Stage one for us washaving someone listen and not try tofix it or say ‘everything will befine,’ ” she says.As time went on, they also foundfriends who have children with disabilities. “There’s nothing better thanthat. You can call them on days whenyou’re really down. Theyunderstand.”Lesson 2: Learn and Share—ButSet Limits“Stage two was educating ourselvesabout the disability,” Kathy says. Thatpaved the way for communicatingwith professionals. “You get furtherwith teachers and doctors,” she says,if you’re knowledgeable about thedisability. “Help those closest toyou understand, too,” she adds, butlet them know you’re still learning.“When people ask questions, it canfeel like pressure. Tell them, ‘Hang inthere with us. We’ll tell you what weknow as time goes along.’ Plus, it’snot what we wanted to talk about firstall the time. It wasn’t helpful for us.”What was useful was a questionsomeone asked early on: Well, what’sthe future likely to look like? “It wasso helpful because it had hope in it,”Kathy says. “Ask me questions aboutwhat you think our future will belike. Have it be forward looking, withhope, not grief.”Lesson 3: Be Prepared forQuestions and Stares“In the beginning you think you haveto explain the disability to everyone,” Kathy says. “You get exhaustedtelling your story that much. It helpsto have short, medium, and longanswers, depending on who you’retalking to,” Kathy says.“If kids ask, they’re okay with a twosentence reply,” she says. “Adultswill ask ‘how did it happen?’ It’s likea defense mechanism; they want toknow how to stop it from happeningto them. They’re not trying to hurtyou; they may just be fearful. I tryto remember that in responding tothem, but the honest answer, which Ibelieve is the best, is that sometimesthings just happen. It’s as simple asthat.” Then there are people whostare and ask inappropriate questions.Call 952-838-9000

about your child’s disability“One doctor told us if people stare,just stare back until they quit looking,”Kathy says. “If an adult says, ‘what’swrong with him,’ I feel it’s my job tosay ‘nothing is wrong. He has CP. ’Their insensitivity is wrong. You don’thave to tell them anything.CO“You constantly have to help peopleunderstand,” she adds.When someone talks down to Sam ortreats him like he’s a little child, Kathyfinds that gentle reminders aboutSam’s teen activities and interests helpto change the interaction.Lesson 4: Talk about Strengths“In one of my very first [Individualized Education Program] IEP meetings, there was a physical educationteacher who said, ‘Let’s talk aboutwhat Sam can do.’ That was the bestadvice. A lot of this world focuses onwhat he can’t do. We just started tofocus immediately on Sam’s assets andwhat he could do. It’s an amazinglypowerful way to refocus yourself andyour child’s future,” Kathy says.“It is tempting for people to pineverything on your child’s disability,”she adds. But sometimes the challengeis unrelated. “Not everything is aboutthe disability.” He’s a person withstrengths who also has CP, Kathy says.The disability doesn’t define him, andthat’s a message she always communicates.Experience—both good and bad—hasshaped Kathy’s philosophy about communicating with others about Sam’sdisability. Time, too, has played arole. “In the early days, I spent a lot ofenergy on it. I tried to learn everythingabout CP and interpret it to the world.I do that less now. Most days, I thinkabout getting lunches packed, getting the kids off to school, getting tolessons and games—just regular, plainold life. The effort is less as time goesby, at least for us,” she says.For others, she offers this simpleadvice. “You have to carve out yourown philosophy. Every child is different, and you need to honor who thatchild is. Focus on their strengths, andlet people know that to you they’reno different than any other child. Adiagnosis of a disability is the start ofsomething, not the end of something.”And remember, Kathy adds, “youdon’t have to figure out everything atonce. One day at a time is a beautifulthing.”Learn about options at Oct. 3 Housing FairParents: don’t miss this chance tolearn more about future housing options for your child. PACER’s sixthannual Housing Resource and Information Fair is an opportunity for families of children and young adults andservice providers to meet and discusshousing options, services, supports,and related issues for children andyoung adults with disabilities.“Parents should start thinking aboutpossible housing options when theirVisit PACER.orgchild is 12, so they can be preparedfor their child’s future,” says SusanShimota, PACER’s housing programcoordinator.State and county representatives willbe available to answer questions. TheFair will be Saturday, Oct. 3, 9 a.m. tonoon, at PACER Center. For more information or to register, call 952-8389000 or visit PACER.org/housing.Grandparent groupmeets monthlyBeginning in September, PACER’sGrandparent to Grandparent Programwill meet at 7 p.m. on the third Mondayof each month at PACER.People with grandchildren of any ageand any disability are invited to meetothers; share concerns, joys, and interests; discover resources; and learnhow they can provide support to theirchildren and grandchildren. For moreinformation, call 952-838-9000.Encourage literacywith these guidesIt’s never too early to start teaching yourchild literacy skills—including thingssuch as listening, speaking, enjoyingbooks, and learning to use writing tools,such as crayons and markers. “PracticeGuides for Parents” can help familiesprovide their infants, toddlers, or preschoolers with fun and exciting literacylearning experiences. “Practice GuidesEspecially for Practitioners” also areavailableParents can help their preschooler develop listening and language skills withone of the parent guides called “WackyWord Games.” This guide provides ideasfor everyday opportunities for playingword games, such as asking your childwhat he sees that’s green while you’rewaiting in line at the grocery store.The guides are from the Center for EarlyLiteracy Learning (CELL), a researchto-practice technical assistance centerfunded by the U.S. Department ofEducation, Office of Special EducationPrograms, Research to Practice Division.CELL is a major initiative of the Center for Evidence-Based Practices at theOrelena Hawks Puckett Institute.Learn more er – Fall2009 – FallPacesetter

Mann Symposium has record attendanceA total of 1,100 parents and teachers attended the inspirational andinformative Fourth Annual NationalTed and Dr. Roberta Mann Foundation Symposium about Children andYoung Adults with Mental Health andLearning Disabilities on Aug.12.Early childhood teacher JenniferJohnson of Minneapolis was one ofthe many teachers attending the eventat the Bloomington Sheraton.“I love it,” she said. “The speakershave passion, excitement, and coreknowledge. It’s contagious for all ofus, and we can bring this knowledgeback and share it.”A special education teacher from St.Paul also appreciated the conference.“I found so many helpful ideas andinteresting research results that I canuse on the job.”A parent of three children with disabilities commented, “I learned somuch from this wonderfulcollection of speakers andresource people.”Those comments reflect thegoal of Dr. Roberta MannBenson, who generouslyfunds this free event whichis cosponsored by PACER.Through the symposium,Dr. Mann hopes to educatemore people about theseissues and reduce thestigma of mental health andlearning disabilities, whichwill ultimately provide moresupport for children andtheir families.Dr. Roberta Mann BensonThe demand for attending the symposium has been great: Attendancehas grown from 300 attendees to thisyear’s total of 1,100.“I’m totally overwhelmed by theresponse from this symposium,” Dr.Mann told the packed ballroom.In opening remarks, former U.S.Senator Dave Durenberger noted thatDr. Mann has committed her wholelife to helping others.“She has a special heart,” added PaulaGoldberg, PACER executive director.“And she does it all without fanfare.We thank her so very much for making a difference in the world.”Order PACER holiday cards; deadline is Sept. 30Delight your colleagues, customers, and others with PACER’samazing holiday cards, customized with your own special greeting.When you send PACER’s holidaycards, you warm hearts twice—once when the recipients openthem, and again as your purchasesupports PACER programs forchildren with disabilities. Youalso make a statement to theworld that you care about your community.Measuring 4 ¾’’ x 6 ¼”, these full-color cards are printedon glossy card stock and come with white envelopes.PACER cards are created during the annual Creative KidsContest sponsored by artist Tony Whelihan, a time whenchildren with disabilities express their artistic side. Each Pacesetter – Fall 2009year, a child’s artwork is chosento be featured on the cards. Thisyear’s winner is Nick Sullivan, 16.Ordering is Quick and EasyWhether you order online, byphone, or by e-mail, simply provideus with: the number of cards you want(100 minimum) your customized greeting your company name or logo the date your cards are needed(after Oct. 26)Order now! Online: PACER.org/help/creativecustom2009.asp Phone: Nicole Stanich, 952-838-9000 E-mail: nicole.stanich@PACER.orgPlease Note: Orders must be received by Sept. 30,2009. Payment is due at the time of your order.Call 952-838-9000

Bullying Prevention Awareness Week Oct. 4-10(Continued from page 1)of bullying can be devastating—oreven tragic.“Our mission is to engage, educate,and empower teens to care aboutbullying,” says Paula Goldberg,PACER’s executive director. “Weencourage people nationwide to worktogether during National Bullying Prevention Awareness Week toincrease awareness of the prevalenceand impact of bullying on all children.”In addition to visitingPACERTeensAgainstBullying.orgfor teens and PACERKidsAgainstBullying.org for elementary schoolchildren, people can help preventbullying in several ways. Free activities to help reduce bullying inschools, recreational programs, andcommunity groups, and materialssuch as contests, classroom toolkits,and more are available at PACER.org.“It’s time to take action,” Goldbergsays. “Teachers, parents, students, andadults throughout each communitymust work together to create a climatethat doesn’t accept bullying. Whenbullying is addressed, communitieswill see more students with higherself-esteem, better school attendance,less physical and mental stress, andbetter school performance.”The week is sponsored by PACER’sNational Center for Bullying Prevention, which is for all children,including those with disabilities. Itpromotes national bullying awareness and teaches effective ways torespond to bullying. National Bullying Prevention Awareness Week iscosponsored by the American Federation for Teachers, National Coalitionfor Parent Involvement in Education,National Education Association, andSchool Social Work Association ofAmerica.United Way and CFC can support PACERPACER Center is eligible for donations made through United Waycampaigns and Combined FederalCampaign (CFC), the workplacecharity campaign for federal civilian, military, and postal employees. PACER is a tax-exempt 501(c)(3) nonprofit organization.United WayThe United Way accommodatesemployees wanting to supportPACER. United Way pledge cardshave a location in which to writeVisit PACER.orgPACER’s name and address(PACER Center, Inc., 8161 Normandale Blvd., Minneapolis, MN55437).CFC (federal, military, andpostal employees)Look for PACER in your local campaign booklet under theChildren’s Charities of America(CCA) heading or alphabetically.You also can see a video about aPACER program by visitingcfcvideospeakersbureau.org andentering PACER as the keyword.To designate your gift to PACER,use code 12272. This code isunique to PACER and should beused under any heading where yousee PACER’s name listed.For information on how to supportPACER through the United Way,CFC, or other workplace charitycampaigns, call PACER’s development office at 952-838-9000 orvisit PACER.org and click on GetInvolved, Make a Donation.Pacesetter – Fall 2009

Demi Lovato tells teens:don’t be afraid to speakout about bullyingBy Julie HolmquistIn a whirlwind two hours at PACERon Aug. 7, 16-year-old Disney starDemi Lovato helped launch PACER’sTeensAgainstBully.org, signed autographs for young fans, and filmedpublic services announcements tochampion the issue.“We hope everyone will join withPACER and Demi to make this a reality – to end bullying in Minnesota andacross the country,” says Paula Goldberg, PACER’s executive director.“As a society, we can’t allow bullyingto continue.”bullied,” Lovato says. “If Ijust told people earlier on, alot of things could have beendone. If you tell your parents,I know it might be embarrassing. But it actually canmake a difference. Don’t beafraid to speak out.”Lovato also advises teens to“watch what you say, andmake your friends aware ofwhat they’re saying.” Whether the message is sent viatext, MySpace, Facebook, orTwitter, the words can affectsomeone, she says. “Just becareful. Make the messagesyou’re sending inspirational.”Lovato agrees. The music sensationwhose latest CD recently hit No. 1 onthe Billboard charts says she hasn’tforgotten the hurtful words that wereonce aimed her way. AfLovato posed for photoster enduring threateningwith fans and teens whotext messages and verbalprovided their time andabuse during seventh grade,talents to create the WebLovato asked her mother tosite. Below: PACERhomeschool her.Executive Director“They say sticks and stonesmay break your bones butwords will never hurt you,but with my experience, I’velearned that’s completelynot true,” she says.Paula Goldberg givesDemi Lovato herfavorite flower. Photosby Jonette NovakLovato says she knows not everyonein a bullying situation has the opportunity to be homeschooled. Her advice?“Put all of your energy into somethinggood,” and tell an adult about the bullying.“One of the mistakes I made was notsharing it with everybody, because Ifelt it was my fault that I was being Pacesetter – Fall 2009During her visit to PACER, Demi Lovato alsofilmed public service announcements about bullyingprevention and TeensAgainstBullying.org. Theannouncements were filmed thanks to the donatedservices of Hoffman Communications, Inc. Photoby Jonette NovakPACER’s Mary Schrock thankedLovato for joining the bullyingprevention movement, and alsoexpressed appreciation for the manypeople who donated funding, time,and services to makePACERTeensAgainstBullying.org areality.Students from Convent of theVisitation School and Saint ThomasAcademy helped write video scriptsand film them for the Web site.Shout Radio Productions of Minneapolis and Savvy Jack, a creativecommunications company, alsodonated services.As the launch ceremony concluded,Michael Keller, chair of PACER’sMarketing Advisory Board andchief brand officer for InternationalDairy Queen, led the crowd in apledge. Everyone repeated, “Theend of bullying begins with me!”Call 952-838-9000

Special education makesgains in state policiesBy Kim KangDespite a state budget deficit, special education was levelfunded in Minnesota for 2010 at 734 million and for 2011at 781 million. Some positive changes were also madeduring Minnesota’s 2009 legislative session, most notablywith the passage of the state’s first law concerning restraintand seclusion.Policy ChangesThe special-education task force, a legislatively mandatedgroup created two years ago, provided its final report to theLegislature during this session.The task force was created to compare the federal Individuals with Disabilities Education Act (IDEA) requirementswith Minnesota laws and rules and to determine whichlaws and rules exceed the federal ones. Comprised of equalnumbers of school professionals, parents, and advocacy organizations, the task force also made recommendations onwhich laws and rules could be eliminated and which onescould be revised.Franni Franken, wife of U.S. Senator Al Franken, talkedwith PACER Executive Director Paula Goldberg during atour of PACER in May.Because of the group’s recommendations, key areas of Minnesota special education laws and rules that exceed federalregulation were retained, including transition at ninth grade,short-term objectives in Individualized Education Programs(IEPs), conciliation, and facilitated IEPs.However, the burden of proof in a due process hearing waschanged to the “party seeking relief.” Consequently, it willbe more important than ever for parents to keep good documentation and records of all school communications in casethey need to exercise their due process rights.Kristi Weiser of IBM (far right, front row), recently receivedthe IBM Helping Hand Volunteer Service Award for hercontributions to PACER. Celebrating with her are (front rowfrom left) Heidi Kraemer, IBM; Bridget Gilormini, PACER’sSimon Technology Center; (back row from left) Mary Schrock,PACER’s chief operating and development officer; GregMurphy, IBM; and Paula Goldberg, PACER’s executivedirector.Teens’ votes can raise money for bullying preventionBest Buy’s @15 Change Exchange program has chosenPACER as one of four organizations to receive a charitable donation. Teens’ votes determine whatpercentage of 250,000 PACERwill receive.Here’s how it works: Teens age14 to 18 can go to at15.com,where they register and earnVisit PACER.orgpoints by taking part in the site invarious ways. The more they do onthe site, the more points they earn.Bullying Prevention Center andits new TeensAgainstBullying.orgWeb site.During the last two weeks of October, they can click on the “@15Change Exchange” link to give theirpoints to Teens Against Bullying.Please tell teens you know to signup now and pass the word! Teenscan earn more points for PACERwhen they refer a friend to thesite.With teens’ help, PACER couldearn up to 250,000 for its NationalPacesetter –Fall 2009

Social networking sites: consider the binstantly during a directconversation or on thephone, teens have timeto think about a response. For teens whohave difficulty speakingbecause of disabilities,online social networking can be liberating.By Julie HolmquistSocial networkingsites have become anintegral part of today’sculture, especially forteens.Of the 65 percent of teensusing sites such as Facebook and MySpace, 61percent use them to sendmessages to their friendsand 42 percent send messages to friends every daythis way, according to arecent study by the PewInternet & American LifeProject.That’s why it’s important for parentsto consider the special concerns andbenefits involved for teens with disabilities using the sites, says BridgetGilormini, coordinator of PACER’sSimon Technology

why she's signed on as the celebrity spokesperson for the site and is partner- . Interested in breaking news affecting children with disabilities or the latest updates on PACER events? . the-minute happenings through PACER's monthly e-news. Don't miss PACER's e-news! Visit PACER.org Pacesetter - Fall 2009 3 Tickets available for .