Statewide Conference Highlights

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1 Educating, Assisting, Supporting, and Informing through this newsletter... A newsletter for and by parents with sons & daughters with disabilities and education advocates. Wichita Administrative Center 3033 W. 2nd Suite 106 Kansas City Center Garden City Center (All toll free numbers for Kansas parents & education advocates) Wichita, KS Topeka Center (316) or Statewide Spanish parent line Volume 80 Mar Statewide Conference Highlights Statewide Inclusion Conference By Susan Phillips and Kathy Moore, Wichita Center n December 13, 2008, Families Together's O Wichita Center hosted an annual statewide inclusion conference. This year's theme was "Under Construction: Building Inclusive Schools and Communities". The conference provided information and resources to help parents, students, educators, and other service professionals achieve the goals of inclusive practices in their schools and communities. Some of the words used by attendees to describe the speakers were: effective, inspiring, extremely informative, wonderful, great, knowledgeable, enthusiastic, and awesome! The morning keynote topic was Multi-Tiered Systems of Support (MTSS) which is a systemic approach to helping all students learn under an inclusive framework. The co-presenters were Colleen Riley, director of special education services for the Kansas State Department of Education and Stephen Hinkle, a self-advocate from San Diego. Breakout session topics included: Employment and Transition; Bullying; Autism; ADHD; The Home Medical Model; Effective Advocacy; and, a demonstration of Interactive Special Education Software (ISE) for job-skills and life-skills training. The day concluded with the afternoon keynote speaker and self-advocate Stephen Hinkle discussing "Extracurricular Inclusion and Social Skills: Exploring The Hidden Curriculum." Based on Mr. Hinkle's personal experiences in school as a student with autism, the attendees learned that extracurricular activities, recess, social skills and friendships are as important as academic classes in inclusive education. Statewide Together We Can Learn Conference By Aimee Keohane, Kansas City Center n February 7, 2009, Families Together s Kansas City Center hosted their annual O Together We Can Learn Conference. This year s conference provided resources and information to help professionals, parents and students to achieve theirs goals and dreams in their schools, communities, and in their lives and the lives of others. The morning keynote topic was Civil Rights: What Are They and How Do they Affect Individuals who have Disabilities? The presenter was Olegario Ollie D. Cantos, VII, continued on page 2 Inside this Issue... Oral Health... P. 2 From the Director s Desk.... p. 2 Family Story... P. 3 Put Your Goals in Writing. p. 4 Meet the Parent to Parent Staff.. P.5 Resources... p. 6 Education Advocate Update... p. 7 Project Life Span. p. 7 Calendar of Events... p. 8

2 ...continued from page 1 blinded as the result of medical complications relating to premature birth, who defied conventional wisdom by becoming a presidential appointee by the age of 37. Breakout Sessions included: Medical Homes for Children with Special Health Care Needs; Autism; DADvocates; Working Together When There is a Language/Cultural Barrier; Effective Advocacy; and, Turning Passions Into Paychecks. The day concluded with afternoon keynote speaker Lee Jones, a graduate of Graceland University. Lee shared his experiences as both a person with dreams and a person with Down syndrome, delivering the message Everyone Has the Right to Have Their Very Own Dreams. One attendee stated, The speakers were both knowledgeable and inspirational. OVERCOME DRY MOUTH WITH HEALTHY OPTIONS hildren and youth with special needs often take C prescriptions and over-the counter medications that cause dry mouth. New findings are showing that dry mouth increases the risk of dental decay and gum disease. Our saliva helps remove food stuck around our teeth and gums. In addition, to relieve dry mouth sensations, we re tempted to suck on hard candies, chew gum and drink juices and soda, all laden with sugar the decay producing villain. Here are steps to take to address dry mouth and keep teeth and gums healthy: Be aware that the person taking medications has dry mouth Ask your physician, dentist and pharmacist what products reduce dry mouth conditions Use only over the counter products that are sugar free, such as sugar free gum, hard candies, and flavored or plain water. Marcia Manter, Oral Health Kansas, A Note From the Director s Desk Parents and Education Advocates: A s we move out of the winter and into IEP season for many students, I want to encourage you to partner early with the educational team of your child or the student you serve. Appointed Education Advocates are so very important to a very vulnerable population of students! Thank you for the time you take to get to know the student for whom you advocate. Knowing his/her strengths, talents, dreams and needs is critical to any parent or advocate s support for a student with disabilities. I have the joy of being an advocate for two young people. They have very different needs and my visits with their care providers and their teachers have been invaluable in my ability to know them and appreciate their gifts and needs. I enjoy the experience very much. If you need any support, as a parent or an education advocate, please call the center nearest you to ask questions, brainstorm ideas, and prepare to be a GREAT team member at IEP meetings this spring! Attending a transition conference or a Parent Networking Conference may help you get in the zone for meetings this spring. Check the calendar for opportunities in your area. Have a great end to the school year!! Connie 2

3 I By Angie Bauer always wanted an exceptional child - a child who excelled academically, athletically and socially. Little did I know that my dreams of that exceptional child would come true, but not in the way that I dreamed. The terminology exceptional would be used throughout the challenge of discovering with what exceptionality exactly my child would be labeled with. My partner and I tried diligently for well over a year to try to get assistance for our then 3 ½ year old son. He was exceptionally irritable and exceptionally sensitive to touch, smell and sounds. He was even exceptionally socially delayed, making relationships with peers non-existent. We made one appointment after another to try to connect all the dots so that our son could get the help he desperately needed. We heard time and time again that these professionals weren t quite sure what was going on with him and that we should be patient. We stumbled upon Families Together and decided to participate in a Family Enrichment Weekend to help educate ourselves about special education. During the course of that weekend we attended many workshops and connected with many families who struggled just like we did. One of the breakout sessions included a workshop on sensory integration and we decided to attend. This workshop changed our lives in many ways. We had a name for some of the oddities that we faced with Brandon. His overwhelming sensitivities to noise, smell, touch and even taste were all explained in a short period of time. We knew at the end of our weekend that our son had all the characteristics of Sensory Integration Dysfunction, but most importantly we knew that Brandon was not the only exceptionally difficult child out there. Families Together helped put some very important pieces together regarding our son s disability. It was because of that weekend event that we knew which professionals to turn to in order to get Brandon the help he needed. Today, Brandon is an exceptional 9 year old child who is diagnosed with Asperger s Syndrome. He participates in basketball and baseball and has formed some good solid peer relationships. We are thankful for our chance encounter with Families Together and the resources they offered our family. 3

4 Aumenta tus Posibildades. Escribelas! Por Lorena Holguin, Kansas City Center spero que ya esten poniendo en practica sus resolución de Año Nuevo y escribiendo sus metas, sabian usteds que E estudios revelan que sólo el 3% de Norte Americanos se preocupa por establecer metas y escribirlas. Ahora imagínense en América Latina en donde temas relacionados con la superación personal apenas están cobrando auge cuánta gente lo haría? Brian Tracy, uno de los expertos más reconocidos en temas de superación personal y profesional, está tan convencido de la importancia de este tema para asegurar la felicidad, abundancia, productividad y éxito, y dice, que el 97% de la gente trabaja para el 3% que las establece con claridad. Aunque lo dice en broma en conferencias y sus libros, tiene mucha verdad. La gente que sabe hacer algo, siempre trabajarán para aquellos que saben porque lo quieren. Brian Tracy. Las metas te obligan a pensar en las infinitas posibilidades para tu vida y crearás un plan para alcanzarlas. Pensarás en por qué quieres un auto nuevo, bajar de peso, mejorar tu relación familiar, cambiar de trabajo etc. Y cuando tu por qué? sea lo suficientemente fuerte, descubrirás el cómo? y la fuerza para soportar cualquier obstáculo ó fracaso. Fijarse una meta es llevar lo intangible (lo que no puedes ver, sentir ni tocar - ideas y pensamientos) a lo tangible (lo que es real). Mucha suerte en este Año Nuevo y que se cumplan todas tus metas. Me da mucho gusto informarles que el Grupo de Apoyo en Kansas City, KS está creciendo cada vez más y si tú aun no as asistido, ven, aprende y comparte. Gracias a las familias que están ayudando a Kelly Kreisler, pediatra conductista de desarrollo de la Universidad de Kansas (KU) a llevar a cabo su investigación sobre Las Barreras para diagnosticar el Autismo en niños Latinos. (les haremos llegar los resultados tan pronto y nos la dejen saber) Estoy super emocionada por nuestra siguiente FEW (Fin de Semana de Enriquecimiento Familiar) en Español ya que este año vamos a tener el honor de tenerla en Kansas City, Kansas, el dia de Octubre. Tendremos Más informatación despues. Put Your Goals in Writing Submitted by Lorena Holguin, Kansas City Center I expect that you are putting into practice your resolution for the new year and are writing your goals! Did you know that studies reveal that only 3% of North Americans worry about establishing goals and writing them. Now, can you imagine in Latin America where themes related to personal improvement are just starting? How many people would do it? Brian Tracy, one of the most recognized experts in themes of professional and personal improvement, is so convinced of the importance of this theme to assure happiness, productivity and success, that he says 97% of the people without goals work for the 3% who establish goals. Although he says it as a joke in his conferences and books, it has a lot of truth. The people that know how to do something will always work for those that know why they want it," says Brian Tracy. The goals oblige you to think about the infinite possibilities for your life and you will create a plan to reach them. You will think about why you want a new car, lose weight, improve your family relationships, to change jobs etc. And when you know the why, it will be sufficiently strong that you will discover the how and then the force to bear any obstacle or failure. Setting a goal is carrying the intangible thing (what you cannot see, feel or touch - ideas and thoughts) to the tangible thing (what is real). Good luck this New Year and I hope that you can reach your goals. The Kansas City Center is very happy to report that the Hispanic Support Group is growing every month and if you have not attended, please come, learn and share. Thank you to the families that are helping Kelly Kreisley, Developmental- Behavioral Pediatric Fellow, with the research in Barriers to Diagnosis of Autism in Latino Children. We ll get the results back to you as soon as we get them. I m very exited to announce that the next FEW (Family Enrichment Weekend) in Spanish will be in Kansas City, KS on October I m looking forward to meeting new families. We will have more information as it draws closer. 4

5 ayzy Bigler is the new K Parent-to-Parent Coordinator in the Topeka Center. She and her husband, John, have three grown children, Shanna, Johnny and Jake and two (soon to be three) grandchildren. Like many of you, Kayzy has children with exceptionalities. For this reason, she is very excited to be part of the Families Together staff - especially to be connecting parents together to provide support for each other. Kayzy realizes how important that support can be and is eager to help parents connect with each other. Laurie Gerber has worked in the Garden City Parent Center for the last four years. She is married to Steve, and they have four children, Jim - 26, Matt - 23, Celeste - 22, Anton - 20 and five grandchildren. Laurie coordinates the Parent-to-Parent program for the western part of the state. Along with enjoying her work on the program, she also enjoys being with her family, traveling, reading and cooking. She also enjoys volunteering for area schools, her church, a homeless shelter and a group for adults with disabilities. Aimee Keohane was born and raised in Boston Massachusetts as the youngest of 10 children. She moved to Kansas 10 years ago with her husband Michael. Aimee and Michael have the joy of raising two very special children, Lily, 11 and Connor, 9, while being involved with their church and many projects within the community to help those in need. Aimee enjoys simple family time, traveling back to the ocean, good food and nature walks. Her biggest joy in life is watching children and families, including her own, break through barriers that are sometimes unjustly placed upon them. Aimee is very excited about being part of the Families Together Kansas City team and looks forward to helping families help each other through the Parent-to-Parent program. Kathy Moore is the Parent-to-Parent coordinator for the Wichita Parent Center, serving South Central Kansas. She has been with Families Together since October, Kathy and her husband, Richard, have one son, Tyler who is seven years old. Tyler has Down Syndrome, polyarticular juvenile rheumatoid arthritis, and has vision and hearing difficulties. Kathy s previous employment has been in Social Services. Since Tyler's birth she has wanted to assist other parents of children with special needs. Kathy stated, I feel that I was blessed when offered a position at Families Together, and I look forward to providing my assistance to other families. The Parent-to-Parent (PTP) program is designed to provide support to parents who have a child with an exceptionality. This support comes from another parent who has been though a similar situation or has a child with a similar exceptionality. Within the program, parents are matched according to the type of support the new parent requests. As supporting parents and referred parents communicate back and forth they are able to provide each other with the acceptance, understanding and support they both need. Anyone who has been a supporting parent for at least one year should have received information by mail in January requesting your current information. If you have not received this, please call the Topeka Center and ask for Kayzy. If you have received this information but have not returned it yet, please do so as soon as possible. It is the goal of the Parent-to-Parent Coordinators to bring a new energy and focus to the program. Families Together PTP staff plan to hold a workshop in the near future, so that they are able to answer questions, offer new ideas and connect with the supporting parents who have volunteered across Kansas. If you would like to learn more about the Parent-to- Parent program, be connected with a supporting parent, or become a supporting parent, please give one of the coordinators a call - they would be happy to assist you! 5th Annual Cerebral Palsy Conference, St. Louis, MO Are you......searching for answers about your child?...looking for new treatments?...needing to connect with parents across the country walking the same journey?...wanting new product information? Then this is the conference for you!!! Presented By The Pediatric Neurology Cerebral Palsy Center at St. Louis Children's Hospital and Washington University School of Medicine

6 Wichita Topeka Kansas City Garden City Spanish line An information service for children and adults with disabilities, their families, and their service providers. Check out these Internet Resources! hat if Families Together earned a penny every time W you searched the Internet? GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo, and watch the donations add up! Just go to and be sure to enter Families Together (Wichita, KS) as the charity you want to support. And, be sure to spread the word! The following is a good place to start. DISABILITY CAMPS RESOURCES: Children s Association for Maximum Potential Internet Special Education Resources Easter Seals State Directory Special Needs Camp Programs Therapy and Respite Camps My Summer Camps Very Special Camps Special Needs Camps Camp Quest Camp Resource Kids Camps CP Ranch Camp Lakeside These camps/programs are for children or youth and may not routinely include persons with disabilities. Please ask that accommodations be made to include your son or daughter s needs in camps not specific to disabilities. Kansas Parent Information Resource Center (A resource for parents of any child) 3500 SW 10th Room 011E Topeka, Kansas website: National Information Center for Children and Youth with Disabilities NICHCY Website All text-only publications have been reformatted to a new easy-to-read layout A side-bar menu makes navigation easy The ALL-NEW resource library featuring the Technical Assistance & Dissemination (TA&D) Network makes finding information a breeze Call us or visit our website! KSDE Friday Facts Special Child is an online publication dedicated to parents of children with special needs. Bookshare Check this out for kids with visual impairments and other disabilities which make them unable to read standard text. Free resource (newsletter) ADA Information and Technical assistance on the Americans with Disabilities Act. Includes training for hiring people with disabilities. The National Youth Leadership Network (NYLN) is dedicated to advancing the next generation of disability leaders. It promotes leadership development, education, employment, independent living, and health and wellness among young leaders representing the diversity of race, ethnicity and disability in the United States. nyln.org 6

7 Education Advocates: It s IEP Season! Submitted by Darla Nelson-Metzger, Education Advocate Co-Coordinator Spring is on it s way and it s the time of year that many IEPs are reviewed. Here are some reminders and tips for those of you who are getting ready to plan another educational year for your student. 1. You have the right to have the meeting scheduled at a mutually agreed upon time. 2. You are to receive a ten-day written notification of the proposed meeting. The notification should include the proposed date and time, location, and the members who will be in attendance. 3. You are an equal team member and by law, have the right to have your concerns addressed at the meeting. 4. You may take someone to the meeting with you. 5. The IEP document is a draft and can be changed to address the concerns brought forth at the meeting. 6. You may agree to the IEP in whole, in part, or not at all. Do not sign in agreement if you feel uncomfortable with the proposed program. 7. You signature of participation is not the same as consent or agreement. 8. Ensure the student s strengths and needs are addressed in the present levels of academic achievement and functional performance section. 9. Make sure you are listed as a parent on the IEP. 10. This is a good time to remind the team of your role. Make sure you discuss how and how often you will be apprised of the student s progress and ensure you are notified of any suspensions in the upcoming year. 11. Thank the team members who have worked with your student. They deserve it. 12. Advocate for the STUDENT and what you feel is in his or her best interest...little else is your concern as the education advocate. Your attendance at your student s IEP is your most important duty as an education advocate. Please make sure you can attend. If you have any questions, please feel free to contact the Families Together center nearest you. Communication Success and AAC Research Project Life Span Institute at the University of Kansas he primary purpose of this NIH-funded project is to determine predictors of communication success in children who T do not speak, or say very few words. Participants will include children ages 3 to 5 years (at start) who attend preschool programs and are speaking very few words. Results will improve assessment and intervention practices for these children by identifying potentially important intervention components that lead to communication success. Our goal is to recruit 150 children in the greater Kansas City metropolitan area, Lawrence, Topeka, and Wichita. Every 6 months over a span of 2 years, each child will receive two ½ day school observations and one to two home visits. We will administer a set of standardized developmental assessments at the start and end of the study in the child's home, free of charge. Family and school staff participants will each receive a stipend of $50 per observation (e.g., $250 for 5 observations), and $5 for completing a short 5-minute survey once monthly. There is not an intervention piece with this study, only the observations described above. If you think your child may be a good match for this study, please contact one of the people listed below. We can answer any questions you have and take the next steps. Thank you for considering participating in this important research on preschool communication development. Kris Matthews, LMSW Project Coordinator or Kathy Thiemann-Bourque, PhD, CCC-SLP Assistant Research Professor 7

8 Date Spring Calendar of Events Event Contact Mar 27-28, th Annual Cerebral Palsy Conference, St. Louis, MO April 2-3, 2009 April 4, th Annual Kansas Fatherhood Summit, Wichita ( parent scholarships are available) Families Together Transition Mini-Conference, Garden City April 24-25, 2009 Families Together Parent Networking Conference, Wichita April 24-25, 2009 Vision Impaired Inservice in America (VIISA), Salina June 26-27, 2009 Vision Impaired Inservice in America (VIISA), Salina Aug 29, 2009 Step By Step Walk, Wichita Sept 19, 2009 Families Together Transition Conference, Wichita Working at Families Together was like a gift. It was exactly what I needed, when I needed it. It s been wonderful. Now it s time to pass the gift on to someone else. Susan Arnold The Families Together staff and board of directors wish to salute Susan Arnold for 17 years of dedicated service to Kansas families! Families Together, Inc. 501 Jackson, Suite 400 Topeka, KS Non-Profit Organization U.S. POSTAGE PAID Permit No. 849 Return Service Requested

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