PARENT TIME VOLUME 26, ISSUE 2 February 2020 In this issue: CVI Parent Support Group NCDB Family Learning Opportunities Conference on Young Years (CYY) MoAT Power Up Conference Northeast Regional CHARGE Syndrome Conference AER International Conference MSB Outreach Staff Hello awesome MoSPIN families, Happy New Year. I am hopeful this newsletter finds you all happy and healthy. I offer helpful information in this edition. I hope some of it will be applicable to your family. Recently I learned about a wonderful app. Novel Effect is a free, award-winning app that brings children’s books to life with music, sound effects, and character voices —- custom-made to celebrate the tone of the story. As you read aloud, Novel Effect follows the sound of your voice and responds at just the right moment. Have fun trying it out. As always, should you have any questions, please do not hesitate to email or call Melissa Moore, Lead Parent Advisor Family Engagement Coordinator melissa.moore@msb.dese.mo.gov 314-633-1591 The Department of Elementary and Secondary Education does not discriminate on the basis of race, color, national origin, sex, disability, or age in its programs and activities. Inquiries related to Department programs and to the location of services, activities, and facilities that are accessible by persons with disabilities may be directed to the Jefferson State Office Building, Civil Rights Compliance (Title VI/Title IX/504/ADA/Age Act), 5th Floor, 205 Jefferson Street, Jefferson City, MO 65102-0480; telephone number 573-526-4757 or Relay Missouri 800-735-2966 Discover CVI is a parent-led support group for parents of children with Cortical Visual Impairment (CVI).  As parents of children with CVI, we recognize that finding other parents who understand your journey and support you along the way can be difficult.  We've been there ourselves which is why we are excited about the opportunity to participate in this local support group. This is a judgment-free zone.  This group is meant to be a relaxing, safe environment to share your thoughts, feelings, and frustrations. We hope to learn more about each other and our families, share ideas and have some fun along the way too!   Please consider joining us. If you have questions or want to learn more, please feel free to reach out to us. We welcome the dialogue.  Jessica Cartwright, Parent Lead                                        Angela Degnan, Parent Lead every.tribe78@gmail.com                                                   ardegnan@hotmail.com   Join us for Discover CVI Support Group meeting on February 25, 2019 at 7:30 p.m. (CST) It is held online via Zoom in order to maximize participation NEW TO DISCOVER CVI, register here  https://form.jotform.com/81925819584168 ONLINE MEETING LINK IS SENT TO DISCOVER CVI GROUP MEMBERS The meeting is sponsored by the Kansas Deaf-Blind Project (KSDB). For more information, email: ksdeafblind@kssdb.org Sponsorship by KS State School for the Blind (KSSB)/KSDB Project does not imply endorsement of a particular philosophy, product or procedure.  Discussions or materials presented at this meeting reflect the views of participants for educational and informational purposes only and not as professional advice for specific cases or circumstances by KSSB/KSDB Project.    The contents of presentations/meetings are developed under a grant from the U.S. Department of Education #H326T180051. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Susan Weigert, Ph.D.  The Power Up 2020 Assistive Technology Conference & Expo will be held March 30 and 31 in Columbia, Missouri. Registration is now open at https://at.mo.gov/. Through sessions, exhibits, and demonstrations, the Power Up Conference showcases assistive technology for all ages and all disabilities with a heavy emphasis on assistive technology for use in educational settings. Sessions on augmentative and alternative communication, assistive technology implementation, text-to-speech, AT for math, Chromebook, and iPad accessibility are just a few of the 47 sessions being presented by leading regional and national assistive technology experts. This year’s conference keynote is Tiana Tozer. Since being injured by an intoxicated driver at the age of 20, Tiana has worked to change attitudes about people with disabilities. Innovative disability leader and Missouri resident, Colleen Starkloff, will address employment of people with disabilities during the conference endnote. General information, the conference agenda, registration forms, and information on speakers, sessions, and exhibitors can all be found on Missouri Assistive Technology’s website at: https://at.mo.gov/. An early-bird registration rate of $215 is available until February 3 after which the rate increases to $270. One day conference registration is also available. Source: Missouri Assistive Technology 2019-2020 Webinar Wednesday Series – US & Canada Only Feb 19 – Lessons Learned: A Parent Panel – 8:00 p.m. – 9:30 p.m. EST (REGISTER HERE) Raising a child with CHARGE syndrome can sometimes feel overwhelming.  Please join us to hear the perspective of mothers as they share their lessons learned and what they know for sure. There will be time for Q&A at the end. March 25 – The Role of the Family in the IEP Process – 8:00 p.m. – 9:30 p.m. EST Presented by: Kristi Probst – Initiative Lead for Interveners and Qualified Personnel and Assessment, Planning and Instruction at the National Association on Deaf-Blindness Navigating the IEP process can be very daunting, to say the least.  Join Kristi as she shares practical tips and strategies on how to ensure that the needs of your child and family are at the forefront of the educational programming for your child.  She’ll be joined by a few families of children with CHARGE syndrome who plan to share their real-life experiences and tips for effective partnership with their child’s educational team. April 22- Lessons Learned: Sibling Panel – 8:00 p.m. – 9:30 p.m. EST Being a sibling of a child with deaf-blindness definitely has its ups and downs!  Join us to hear the perspective of a handful of siblings as they share joys, challenges, tips, and triumphs. There will be time for Q&A at the end. Watch for registration information in your email inbox or sign up for eNews now.  For more information go to : https://www.chargesyndrome.org/for-families/resources/webinars/ Join our community of VRTs, Orientation and Mobility Specialists, TVIs, LVTs, advocates, scholars, policymakers, and other  professionals for the AER International Conference 2020. The conference will feature dynamic keynote speakers, global leaders and world class presenters covering a range of topics of critical importance to the field. Earn CE hours and make career changing connections! It is continuing education at its best. Whether you need CE hours for ACVREP, CEUs for CRC, professional development hours for other certifications or simply want to expand your contacts and knowledge base, this is a great conference for you. Check out the new conference format and Conference Schedule at a Glance New This Year: Symposium Day Thursday 7/23…Conference participants can select a full-day or half-day Symposium(s). Each is intentionally designed and will explore in rich detail topics of high importance. In addition, conference registration includes 3 full days of educational breakout sessions Friday-Sunday. Click here to view the list of Symposiums and other special events agenda: Symposiums and other Events Did you know? This conference is the only convening of its kind in the United States. The conference brings together more than 600 professionals to focus not only on advancing knowledge, skills and abilities, but also to highlight successes, resilience, assets, and strengths. With over 170 educational sessions, special events, award ceremonies, and so much more, it will certainly prove to be the gift that keeps on giving long after the conference ends! When: July 22-26, 2020 Where: St. Louis, MO Conference Venue: St. Louis Union Station Hotel MAY 1 – 3, 2020 NORTHEAST REGIONAL CHARGE SYNDROME CONFERENCE REGISTRATION NOW OPEN! Families – FREE http://bit.ly/CHARGE-Families Professionals - $150 http://bit.ly/CHARGE- Professionals Vendors - $100 http://bit.ly/CHARGE-Vendor Educational Track Interpreter or Intervener? Charting the Life Course Framework Curriculum Adaptations for Sensory and Conceptual Access Why Autism & CHARGE Look So Much Alike From the DB Perspective: Young Adult Panel Medical Track Feeding & Swallowing Techniques Understanding of the Ophthalmic Pathway Sex Hormones, Puberty and Teaching Safe Sexuality Sleep in Children with CHARGE Syndrome Esophageal Atresia in Children with CHARGE Syndrome Questions??? 718-997-4856 nydeafblind@gmail.com DoubleTree by Hilton 4355 US Route 1, Princeton, NJ 08540 http://bit.ly/CHARGE-HotelBooking HOSTED BY: State Deaf-Blind Projects from NY, NJ, PA, MD, DE, VA National Family Association for DeafBlind CHARGE Syndrome Foundation Helen Keller National Center National Center on Deaf-Blindness Meet the Outreach Staff https://msb.dese.mo.gov/outreach-services/staff.html