Hi, just a reminder that you're receiving this email because you have expressed an interest in CDSPG. Don't forget to add [email protected] to your address book so we'll be sure to land in your inbox! You may unsubscribe if you no longer wish to receive our emails. EXTRA!!! The Chesapeake Down Syndrome Parent Group Newsletter April 2015 IN THIS ISSUE... Genetic Counselor Meeting... IQ Testing... Open Board Meeting... Adult/Teen Mentoring... Amazon Smile... One Question... Calendar... Volunteer... CDSPG Presents DS Diagnosis Dos and Don'ts to Johns Hopkins Genetic Counselors By Anna Fulbright, CDSPG First Call Chair, Board Member On Wednesday April 8 I had the pleasure of speaking to the genetic counselors at Johns Hopkins Hospital about best practices for delivering a Down syndrome diagnosis and about CDSPG's First Call program. The recommendations for delivering a diagnosis came from papers by Dr. Brian Skotko and colleagues that review studies where parents reported on what was most and least helpful during their diagnosis experience. Some of these recommendations include using respectful and non-judgmental language, and delivering the diagnosis during a scheduled phone call for prenatal diagnoses and in a private room with both parents present for a postnatal diagnosis. Thanks to several members of CDSPG, I was able to share some personal examples of how providers had or had not followed these recommendations. These studies also talked about the importance of providing parents with up-to-date, accurate, and objective information about Down syndrome. This view is also shared by the Maryland State legislature who in 2014 passed the Pro-Information law that requires that patients receive this information. I shared some of the resources that are most recommended by the Department of Health and Mental Hygiene such as the Lettercase book, Understanding a Down Syndrome Diagnosis, and Down Syndrome Pregnancy's book, From Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome. Finally, the studies discussed how parents with a prenatal or birth diagnosis often desired to be connected with other families who have a child with Down syndrome. First Call was designed to meet this need, and I discussed how medical providers could refer their patients to our program. The genetic counselors were very receptive and interested in the information I shared. We hope to have similar presentations at more hospitals throughout the Baltimore area. If you are interested in being part of the First Call team, please contact me at [email protected]. IQ Determines Category, Track Contentious In Community Next Seminars Discuss First IEPs, SpEd Advocacy About 20 parents attended the IQ Testing and Results seminar on Thur., March 26, presented by Ms. Aimee Kandelman, Howard County school psychologist. IQ assessments are one of the criteria IEP teams use to determine a student's category of disability, as required by the federal government. But whether it is appropriate for teams to use scores to determine a student's educational track (diploma or certificate) continues to be a contentious issue among our community. Here are some key points from the seminar: Parents can ask why one test is chosen over another. There are many IQ tests designed for different age groups, including tests for children who are non- or less verbal. The results should be used in conjunction with classroom qualitative information and behavioral observations. Focus on the relative strength of the results instead of the absolute strength or the total score. IQ scores tend to stay consistent but with appropriate intervention, adaptive skills can change. Ask the psychologist to highlight items that could be helpful for the team (weak short-term memories, need for repetition, etc.) to generate IEP goals. Upcoming CDSPG seminars The First IEP: Transitioning from IFSP to IEP Thur., May 28, 6:30 - 9 pm Central Presbyterian Church, Towson, MD Advocacy 101 A half-day seminar to discuss preparation for IEP meetings, Universal Design for Learning, and developing SMART IEP goals and a vision statement for your child. July/August If you have any ideas or suggestions for future education and training seminars or would like to join our advisory committee, e-mail Yvonne Cotto. Survey, Focus Group Findings to be Presented Next Month Open Board Meeting on May 4 in Towson Next month, CDSPG will host an open board meeting, giving all of our stakeholders an opportunity to listen and give feedback on important issues affecting our organization. Leading the meeting's presentations will be a discussion of CDSPG's new strategic plan and the findings from our stakeholder survey and focus group. Board members and committee chairs also will present on financial and membership affairs, fundraising events, communication strategies, education & training, medical outreach/first call, and other special programs. The meeting will take place Monday, May 4, from 7:30 - 9 p.m., at the Trinity Episcopal Church in Towson, MD. Please RSVP to let us know how many people to expect. If you have any questions, email [email protected]. Mentoring Program Builds Confidence, Independence, Cultural Awareness Adults and Teens with DS Pair for New and Improved Brightside Project The BrightSide Project is having an informational meeting to bring together families who are interested in participating in this new and improved mentoring program to learn more and shape future events. The Brightside Project is a mentoring program that pairs adults (age 19 and older) with Down syndrome with teens (age 13-18) with Down syndrome to develop a mentoring relationship and participate in fun, educational and inspiring activities. BrightSide helps build selfconfidence, team building, leadership and social skills to help individuals with Down syndrome become more independent and culturally aware. The program will be run by licensed social workers and supported by a team of volunteers. E-mail [email protected] to learn more about the program and the informational meeting. Amazon Smile One Question... The next time you shop Amazon, you can help support CDSPG. When you shop through AmazonSmile, select Chesapeake Down Syndrome Parent Group as the benefiting charity. Amazon will donate to CDSPG 0.5% of the price of your eligible AmazonSmile purchases. Answer this one question to help CDSPG communicate with you better. Thank you for your support! Family Social at the Bounce House Friday, April 17, 2015 6 - 8:30 p.m. Pump it Up | Elkridge, MD More information and RSVP Playground Pizza Party Saturday, May 2, 2015 Noon Rockfield Park, Bel Air, MD More information and RSVP Open Board Meeting Monday, May 4, 2015 7:30 - 9 p.m. Effective communication is so critical to a successful organization. CDSPG wants to get information and support out to its families in the best ways possible. How would you prefer to receive communications from CDSPG? Trinity Episcopal Church, Towson, MD More information and RSVP Seminar: Your First IEP: Transitioning from IFSP to IEP Thursday, May 28, 2015 6:30 - 9 p.m. Central Presbyterian Church, Towson, MD CDSPG Golf Classic Monday, August 3, 2015 10 a.m. - 7 p.m. Hunt Valley Golf Club, Phoenix, MD More information and Register See full event listing online. Check the CDSPG Web site regularly for event updates and registration information. We also post events on our Facebook page. With a Little Help from Our Friends, We Can Build a Better CDSPG - Get Involved! How can CDSPG better serve you and your family? Your needs and great ideas can be realized, but first we want a little help from YOU. Join one of our working or advisory committees or even the board of directors, and you can have a direct impact on creating, expanding and running programs that support families to help individuals with Down syndrome reach their fullest potential in the community. Our network of support will grow stronger and fuller with your knowledge, expertise, time and willingness to serve. Join us! If you are interested in joining the board or any of our committees or have questions, please contact Courtney Dunevant at [email protected]. Stay Connected Forward this email www.cdspg.org CDSPG, P.O. Box 20127, Baltimore, MD 21284. This email was sent to [email protected] by [email protected] | Update Profile/Email Address | Rapid removal with SafeUnsubscribe™ | Privacy Policy. CDSPG | P.O. Box 20127 | Baltimore | MD | 21284-0127