Are you the parent of a child who has a genetic condition such as Down syndrome, Fragile X, or Marfan syndrome? Have you searched for a base of knowledge that is comprehensive and reliable? Do you spend energy wondering HOW your child should be included in typical school programs, not questioning IF he/she should be included? You may be surprised to know that there is a new website receiving national and international attention! It is called GEMSS – Genetics Education materials for School Success www.gemssforschools.or

Dillon, Ann

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University of New HampshireUniversity of New Hampshire Scholars' RepositoryInstitute on Disability Research Institutes, Centers and Programs3-2014Finding the GEMSS in Schools.Ann DillonUniversity of New HampshireFollow this and additional works at: https://scholars.unh.edu/iodPart of the Disability and Equity in Education Commons, and the Special Education andTeaching CommonsThis Article is brought to you for free and open access by the Research Institutes, Centers and Programs at University of New Hampshire Scholars'Repository. It has been accepted for inclusion in Institute on Disability by an authorized administrator of University of New Hampshire Scholars'Repository. For more information, please contact nicole.hentz@unh.edu.Recommended CitationDILLON, AD. Finding the GEMSS in Your School. Exceptional Parent. 44, 3, 24-27, Mar. 2014. ISSN: 00469157.www.eparent.com/EP MAGAZINE • September 2013  24If you are like me, I always had my eyes and earsopen to learn about any information to help my daugh-ter receive a good education! Having a genetic condi-tion that was both rare and new for her school, shemade all of us on the team try our best and then hope!I wish GEMSS was available when she was starting outin school! It would have been a great source of infor-mation that we could have used as a foundation, andthen branched out as needed!– Ann Donoghue DillonAre you the parent of a child who has a genetic conditionsuch as Down syndrome, Fragile X, or Marfan syndrome?Have you searched for a base of knowledge that is compre-hensive and reliable? Do you spend energy wondering HOW yourchild should be included in typical school programs, not question-ing IF he/she should be included? You may be surprised to knowthat there is a new website receiving national and internationalattention! It is called GEMSS – Genetics Education materials forSchool Success www.gemssforschools.org BACKGROUNDLaunched in 2012, GEMSS now numbers over 20 conditions onits site. GEMSS has relied on feedback from parents, teachers, andviewers to help shape it. About seven conditions per year are beingadded and the site has expanded to include stories of children andadults who have many of the conditions.Originally, a grant through the New England Genetics Collaborativeencouraged workgroups to form within the Collaborative. TheEducation & Outreach WorkGroup began to dream aboutusing the WEB to educate par-ents and teachers about the pos-sibilities, cautions, and supportsthat are necessary to make achild’s education more success-ful! Knowing that education canhelp alleviate the fears that canblock acceptance and inclusion,they aimed to strengthen andreinforce that belief that educationfor ALL children, including thosewho happen to have a geneticcondition, can occur in the typi-cal classroom alongside theirpeers if they have the right sup-ports. The content for each condi-tion is created by a geneticscounselor, and then travels to aparent reviewer, a geneticist,24 March 2014 • EP MAGAZINE/www.eparent.comfinding theGEMSS inyour schoolBY ANN DONOGHUE DILLON, M.ED., OTR/L • PHOTOS COURTESY THE GEMSS WEBSITEGENETIC ALLIANCEGENETIC ALLIANCEThe world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.&GEMSS was developed by theNew England RegionalGenetics Collaborative, one ofseven HRSA-funded regionalgenetics collaboratives.Genetic Alliance is a nonprofithealth advocacy organizationthat works closely with theseregional collaboratives onengaging families andindividuals and improvingaccess to genetic services. Formore information on GeneticAlliance and availableresources for individuals andfamilies around genetics andhealth, visitwww.geneticalliance.org. www.eparent.com/EP MAGAZINE • March 2014  25and finally then back to our parent reviewer! Whenever possible,we also try to request input from parents, support groups, andexperts in the particular condition. Quite a journey, but we believethe process brings technical and educational information to view-ers in a thorough and readable format.NAVIGATING THE SITEThe landing page for each condition highlights general informa-tion and often refers to additional links for more detailed informa-tion on the genetics and medical descriptions. Also on the homepage are buttons that will lead to predictable broad categories ofinformation for each condition including:• Dietary/Medical Needs• Education Supports• Behavioral and Sensory Support• Physical Activity, Trips, and Events• Emergency Planning• ResourcesWithin most of those broad categories are two sections: WhatYou Need to Know and What You Can Do. The former gives infor-mation and facts for that category, and the later gives ideas andstrategies to consider for that category.The site also includes pages that highlight topics of interest suchas transition, resources, or explanations of the difference betweenearly intervention and educational plans. There is also a simplechart that gives parents and teachers a framework for reviewingeducational plans. It explains the differences and similaritiesbetween an IEP (Individualized Educational Plan) and a 504 Plan.If your child’s condition is undiagnosed or we do not have yourcondition listed, this resource (found under FAQs -Education sec-tion) is a great place to start. You can also look under similar con-ditions and get ideas on how to help your child.An additional feature of most conditions is the story of a childor adult who has that condition. When interviewed, most parentstalked about the ways in which the education system had beenhelpful and how they worked with their school teams. Many par-ents also offered advice and shared wisdom directed to both teach-ers and parents. These stories seem to provide a context and help-PLEASED TO MEET YOU   The GEMSS websitefeatures “Meet a Child” pages, whichintroduce school-age children along withtheir conditions. Brendan and sister Courtney(above) appear in the Down Syndromesection, while Sophia (right) appears on theTuberous Sclerosis Complex page. 26 March 2014 • EP MAGAZINE/www.eparent.comGretchen is a six-year-old girl who has Down syndrome. Herteacher, excited to welcome Gretchen into her first grade class,was told about GEMSS by the school nurse. Together, theteacher and nurse explored the GEMSS site to prepare forGretchen’s arrival. They made a list of questions to askGretchen’s parents at an upcoming get-acquainted meeting.Based on reviewing the medical and dietary information, as wellas the ideas on communication and supports, some of theirquestions included:• Does she have cardiac issues?• How is her diet? Any restrictions?• Are there muscle tone issues that impact her eating or swal-lowing, or her ability to sit in the typical classroom chairs?Meanwhile, the parents who had originally forwarded theGEMSS site link to the school nurse also did their review of thesite. They had learned about it on a national list serve and fromlinks on a national site. Their questions were concentrated onthe educational and academic parts of the site, as well asaddressing some fears about emergency planning.• How can we explore communication strategies and technologythat will allow her to fully participate in the regular curriculum?• What therapies will be useful and effective in helping herfully participate in a typical day at school?• What supports will help her develop socially and enjoy rela-tionships with peers?• What can we do to be prepared for any emergency thatmay arise?When the team met, they not only worked through thesequestions but found they had more questions. Using the GEMSSsite as a starting point, they felt they ‘covered all the bases’ butthen sought out specific input from others involved inGretchen’s care, such as her pediatrician.Using GEMSS as a School Teamful ideas to teachers and parents who are beginning on a schooljourney or want to look ahead into the future.USING GEMSS IN SCHOOLSHere are a few ways GEMSS might be used in schools:• Develop lesson plans and IEPs• Support children with challenges who are not diagnosed• Prepare for educational and medical transitions• Support for field trips• Planning for meals and snacks• Posting link to Newsletter/Web• Staff and parent education• Develop emergency plan • Modify physical activity/education• Promote GEMSS to colleagues/friends/administrators/districtFINAL THOUGHTSAs GEMSS expands, more conditions and children’s stories willbe added. Conditions coming next are Aicardi, Turner /Klinefelter,Kabuki, Smith Magenis, Rubenstein Taybi, and Sotos. Traineesfrom the NH LEND program* are working with the project to ana-lyze data from a user survey and further inform the project on newdirections and identify consumer needs. GEMSS welcomes viewer input and comments, which can besent to Karen.smith@unh.edu. Please visit and revisit GEMSS atwww.gemssforschools.org and let us know how we can help!•For more information about the NH LEND Program, please visithttp://www.mchlend.unh.edu/home.aspxABOUT THE AUTHOR:Ann Donoghue Dillon, M.Ed., OTR/L, is a Clinical Assistant Professor at theInstitute on Disability located at the University of New Hampshire. She servesas coordinator of the NH Leadership Series, a faculty member of the NH LENDProgram, and helps develop and promote the GEMSS Project. She is currentlyserving on the NH Governor’s Commission on Disabilities. Her daughterBrianna Rose had Aicardi Syndrome and passed away at the age of 25 in 2010.“Jack is one of the happiest children I have ever met,” sayshis mother. He has a smile that can light up a room and anendless supply of hugs. He is never too busy to say hello to afriend or to tell a stranger to "have a great day." Being such afriendly little guy has earned him the nickname “The Mayor”at his elementary school. Jack loves tractors, trains, cows, and music of all types. “Heis the only seven year old I know that enjoys listening to jazzwhile eating his after school snack or singing Tom Petty clas-sics while gettingdressed in themorning,” quipshis mother. Heprefers British car-toons to Americanand has a wholerepertoire offunny little voicesand accents thathe uses on a regu-lar basis. It is diffi-cult to be aroundJack and not smile! In fact, when the family goes out intothe community, it is not unusual for him to leave a trail ofsmiling strangers behind him. Ever since Jack was a baby he has loved books. Snugglingand reading a favorite book has always made him feel betterwhen sad or anxious. When he started talking at age four,his family realized that “he couldread really well.” They also realizedhis anxiety was more severe thanthey imagined. “Over the years hewould spontaneously cry when wewere outside. It was only after hestarted talking that he was able totell us that he was afraid of carhorns,” his mother remarks. Jack has made huge gains sincehis diagnosis of Fragile X Syndromeat sixteen months. “He has most of the symptoms typicallyfound with Fragile X including: dyspraxia, sensory processingdisorder, hypotonia, difficulty with communication and anxi-ety,” according to his mother. But with dedicated and experi-enced school staff, private therapists, and peer supports, hehas overcome the challenges that the symptoms cause. The staff at his school communicates with his family andhis private therapists on a daily basis to provide consistency.His classmates include him in school activities and socialengagements outside of school. “They are a great group ofkids who, despite being very young, are patient and support-ive,” his mother says. Jack has a nine year old brother namedMichael who reminds Jack on a daily basis that he is "thebest brother in the world." His mother feels that “Jack will face many more obstaclesas he grows but I am confident that he will continue to con-quer them as long as he has the support he needs.”JACK“The Mayor”Excerpt from GEMSS:Fragile X - “Meet a Child”When the familygoes out intothe community,it is not unusual for him to leavea trail of smilingstrangers behind him.• 22-q DeletionVelocardiofacial• Achondroplasia• Angelman Syndrome• Cornelia de Lange• Cystic Fibrosis• Down Syndrome• Ehlers-Danlos Syndrome• Fetal Alcohol SpectrumDisorders• Fragile X• Marfan Syndrome• MCAD• Neurofibromatosis 1• Noonan Syndrome• PKU• Prader-Willi• Rett/Rett VariantSyndrome• Sickle Cell Disease• Tuberous Sclerosis• Urea Cycle Disorders• VLCAD• Williams syndrome• Undiagnosed (GeneralStrategies & Tips)Current Conditionswww.eparent.com/EP MAGAZINE • March 2014  27Copyright of Exceptional Parent is the property of EP World, Inc. and its content may not becopied or emailed to multiple sites or posted to a listserv without the copyright holder'sexpress written permission. 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Finding the GEMSS in Schools.

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