Spring 2012: Sensory Integration & In the School - CdLS

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Director’s Message Goodbye It’s with bittersweet emotions that I announce that I’m leaving the CdLS Foundation after more than four years at the helm. As the second executive director the organization has had since it was founded in 1981, I’ve had the privilege to work with, learn from, and nurture a talented, professional, passionate team of staff and volunteers. I’m very proud of the achievements and “firsts” our team has made over the last four years, including: establishing the 21st Century Conference Fund; raising $1 million dollars in revenue for the first time; funding the Foundation’s first research fellow; revamping the Web site; creating a CdLS diagnostic checklist; starting a strategic plan; and translating more than 20 publications into Spanish. I leave the organization knowing that together we further enhanced the strong foundation I inherited when I first arrived. I know that our accomplishments at the Foundation have brought families and professionals closer together striving for a common goal, and that the future for all individuals with CdLS is brighter because I have had the honor of being the executive director. Thank you to everyone I’ve worked with who has made this such a rewarding experience. I’m so grateful for the support of our board, staff, partners, funders, and colleagues. While I’m looking forward to my new position, I will continue to actively champion and support the work of the CdLS Foundation. Our highly engaged Board of Directors has named Marie Malloy (pictured right)—a CdLS Foundation staff member since 2006 and Assistant Executive Director since 2010 —as the Acting Executive Director through 2012. Please join me in welcoming her in her new position and wishing her success as she leads the organization into the future. Sincerely, Liana Garcia-Fresher, R.D., M.S. 4 Making Sense of Sensory Integration in CdLS In This Issue 5 A Closer Look at Sensory Issues 9 10 Foundation Heroes: Jim K. Super Siblings: Tessa and Taylor 6 In the School: Deaf-Blindness 11 Mailbag 7 A Closer Look at Hearing and Vision Loss 15 Lisa’s Legacy You’ve probably seen funny looking blocks like this one on everything from books to orange juice containers these days. They are called Quick Response (or QR) codes. If you have a smartphone, simply download a QR code reader app, scan a block and you’ll be taken to a Web page—in this case, the CdLS Foundation Web site. REACHING OUT 2 www.CdLSusa.org
The Importance of Early Intervention by Antonie Kline, M.D.,CdLS Foundation Medical Director Although there is a broad spectrum of abilities in Cornelia de Lange Syndrome (CdLS), most individuals have some degree of intellectual disability/ developmental delays. This can range from severe or profound disability to normal intelligence with learning disabilities, and anything in between. Early identification of developmental delays is one of the most critical aspects of any child’s life, particularly with an underlying condition. Mandated by federal law, any individual who is at risk for developmental delays is eligible for early intervention services provided through each county in the United States. It was determined in the 1970s that children at risk will have better outcomes if they have access to these services. By 1980, governmental funding was well established for birth to age three programs. This was shown to have an impact: In one of our early studies of CdLS, developmental information was obtained and reviewed on 122 individuals. Those born before 1980 were found to exhibit lower intellectual quotient (IQ) scores than those born after 1980. Early intervention services, which include physical, occupational and speech therapies done in the home, must be tailored to each individual. Different strategies are used depending on the degree and extent of the disability. Children who are nonverbal, with delayed or absent expressive speech (commonly found in CdLS), need to be taught differently than children with age-appropriate language skills. Infants will start with physical and occupational therapy and have speech therapy added as language starts to emerge. There may be sensory processing issues in CdLS, possibly more severe in those with higher intellectual function, and all therapists should be made aware of issues related to any autistic-like behaviors, which might be present in CdLS. Areas of strength in learning in CdLS include visual-spatial memory, fine motor skills, and perceptual organization, indicating that the use of computers, tactile stimulation and fine motor activities should be stressed in therapy and education. Augmentative and alternative communication systems have been advancing and are accepted and approved for classroom use and should be incorporated as children with CdLS move into the school-aged years and beyond. With a range of evaluations, approaches and outcomes, these services are the most crucial in maximizing a child’s full potential in the years before entering preschool and kindergarten. Reaching Out Published Since 1977 (ISSN 1097-3052) Cornelia de Lange Syndrome Foundation, Inc. Incorporated December 1981 email: info@CdLSusa.org www.CdLSusa.org BOARD OF DIRECTORS President. .........Marc Needlman, IL Vice Presidents.. . . . . . . . . . . . . . . . . . . . . . . . . . . Eileen Ahearn, M.D., Ph.D., WI . . . . . . . . . . . . Robert Boneberg, Esq., NJ . .Kari Cunningham-Rosvik, A.P.R.N, WA Treasurer ........ Thomas O’Brien, IL Secretary. ........... Garth Black, PA Directors......... Michele Ackles, DE .. . . . . . . . . . . . David Barnes, Esq., NH . . . . . . . . . . . . . . . .Shelly Champion, MA . . . . . . . . . . . . . . . . .Catherine Caron, NH . . . . . . . . . . . Richard Haaland, Ph.D., GA . . . . . . . . . . . . . . . . . . . David Harvey, GA . . . . . . . . . . . . . . . . . . Penny Ketchem, PA . . . . . . . . . . . . . . . . . . . Dianne Lessa, MA . . . . . . . . . . . . . . Carlos Madrid, Esq., TX . . . . . . . . . . . . . . .Wendy Miller, Esq., CA . . . . . . . . . . . . . . . . . . . . . Mary Opitz, TX . . . . . . . . . . . . . . . . . . . Fran Rissland, GA . . . . . . . . . . . . . . . . . . . Beth Smisloff, NY PROFESSIONAL STAFF ACTING EXECUTIVE DIRECTOR Marie Concklin-Malloy MEDICAL DIRECTOR Antonie Kline, M.D. DEVELOPMENT MANAGER Gail Speers FAMILY SERVICE MANAGER Deirdre Summa, M.S.W. FINANCE MANAGER Kelly Brown FAMILY SERVICE COORDINATORS Lynn Audette, M.S.W. Janette Peracchio, M.Ed. GRAPHIC DESIGNER/WEB MASTER Francesca Scognamiglio OFFICE MANAGER Sara Gaffney All information contained herein is for the reader’s personal interest. Articles on treatments, medications, or procedures, etc. are not guides for self-treatment. Questions should be discussed with your doctor or other appropriate professionals. The CdLS Foundation does not endorse any product advertised and/or mentioned in Reaching Out. 1.800.753.2357 3 Spring 2012
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Page 7 and 8: Dr. Antonie Kline, the Foundation
Page 9 and 10: Foundation Heroes: Jim K. For Jim K
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Page 15 and 16: Scott Tyner Dolores and Donald Sand

Spring 2012: Sensory Integration & In the School - CdLS

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