SPECIAL NEWS FOR SPECIAL NEEDS Issue 4 Summer, 2003 SUMMER IS ALMOST OVER In this issue we’ve included a great article on the VSA arts of Delaware. Art can be a positive form of expression. New websites are provided regarding some interesting family activities for those long summer days. We also added a new book review section where we will showcase a new book in every newsletter. Hopefully, you will have a chance this summer to check books out of the library. Reading can be so much fun for the entire family. This is our fourth issue. We continue to look for ways to improve our newsletter so it meets the needs of our families. Please feel free to call Kellie at 302-995-8617 or Sandy at 302-422-1335 with your ideas and suggestions. Or, you can reach us by e-mail at kellie.mckeefery@state.de.us or sandy.ward@state.de.us. We look forward to hearing from you. Kellie & Sandy Family Support Specialists MAILING LIST Please help us keep our mailing list updated. If you are currently receiving mailings from us and would like to discontinue them, please call Kellie at (302) 995-8617 or Sandy at (302) 422-1335 or (800) 752-9393. If you would like to receive our mailings (especially the newsletter) via e-mail, please call Kellie or Sandy with your e-mail address. SAVE THE DATE October 28, 2003 3:30 – 6:30 p.m. Delaware Technical & Community College Conference Center - Rooms 400A & B The Interagency Coordinating Council (ICC) invites you to the 10-year anniversary celebration for Delaware’s Child Development Watch (CDW) and the Birth to Three Early Intervention System. We will be honoring families, past and present ICC members, CDW staff and early intervention providers. Please plan to join us and bring a story and/or picture to share on our Memory Board. More details will be included in the next issue of Special News for Special Needs. If you have any questions, please call the Birth to Three Office at (302) 255-9132. Check Out These New Websites - MetroKid@family.com. MetroKids/SpecialKids is a free resource directory for parents and caregivers seeking information and services, from medical to recreational, relevant to children with special needs. - www.delawarenaturesociety.org The Delaware Nature Society offers numerous programs and trips throughout the year. Programs are offered for 18-month-old toddlers extending to adulthood. - www.destateparks.com Enjoy Delaware’s state parks that feature a variety of activities for people of all ages. Many programs have special features, which vary by season. - www.readalouddelaware.org Various workshops offered to promote the importance of reading. VSA arts of Delaware VSA arts of Delaware (VSADE) (formerly Very Special Arts) was established in Delaware in 1988 to promote creative power in people with disabilities. VSA stands for: "Vision" of an inclusive community, "Strength" in shared resources, and "Artistic Expression" that unites us all. Its sole mission is devoted specifically to enhancing capabilities in the arts. As valuable learning tools, the arts should be fully accessible by all individuals, regardless of age. The VSADE program participants range in age from three to 101. Programs are statewide. Programs funded include: * Artist-in-Residency provides trained artists to work with people with disabilities at schools and community sites. * Art Training Awards/Scholarships provides scholarships for professional training in either visual or performing arts for children with disabilities. * A Celebration of Creativity, a multimedia art show, and Start With The Arts, provides an early childhood curriculum to teach basic preschool concepts. For additional information about VSADE please contact their office at 302- 857-6699 or visit their web site at www.VSADelaware.org. ASK DR.O Dr. Carol Owens Child Development Watch Pediatrician Q. When do we begin potty training? A. ? Your child should be able to say and understand words that your family will use for potty activities. ? Your child should be able to stay dry for two hours or more. ? Your child should be able to undress and get onto a potty-chair or toilet. This includes the skill of walking backwards for a step or two and sitting backwards in a chair rather than climbing in forward and turning around. (These skills usually occur in the 18-24 month period.) ? Eagerness to please should be demonstrated by your child. You can offer encouragement and opportunity. Q. Where can I find more help with potty training? A. The videotape “Its Potty Time” by Dr. Barbara Howard of Johns Hopkins University is available for $19.99 plus shipping by calling 1-800-23- POTTY. Your service coordinators at Child Development Watch also have helpful handouts from our resource rooms, including handouts from the American Academy of Pediatrics. PARENTS’ CORNER It used to be, years ago, that if a family had a child with a disability it was pretty much kept a secret. It was rare for anyone that was not in the immediate family to actually see the child. Most of all, no one outside of the family dared to mention anything about the child unless it was in a hushed tone with a raised eyebrow. In that day others did not understand about disabilities. Looking back now, we tend to think of this era of time as being uneducated and backward. We pride ourselves on the fact that we, as a society, have come so very far. In many ways, we have come very far with educating our culture about disabilities. Our society is more aware than ever before about the rights of the disabled. We even have disabled actors playing roles on television. It is not uncommon to see a disabled person in a store, in a place of employment or in schools. For as far as we have come, there still tends to be one group of people that do not talk about the disabled. This group is the parents of disabled children. It is not that this group does not want to talk, but that it does not know with whom to talk. This group is far more educated about the disabled than the general public because they live with a disabled person on a daily basis. They know that disabilities go way beyond the ramps and extra large bathroom in the store. They know it is a part of everyday life. They cannot just decide to think about disabilities when they see a stranger with one. Instead, they are faced with it during the tube feedings, the therapy sessions, the doctor appointments, and the stares from strangers. Thankfully, in Delaware, Family Forums* have been established just for parents of children with special needs. In the forums, parents are free to talk about the struggles and the joys of having a child with a disability, knowing that everything they say will, for once, be completely understood because they are talking to other parents that have children with disabilities. A great deal of encouragement is given by other parents just in the sharing of similar situations. If you are a parent of a child with a disability let me encourage you to come to one of the Family Forums. You do not have to be strong by yourself and fight all the battles alone. Family Forum is simply a group of parents that love their children dearly and want more than anything to give them the best care and opportunities they can. Shared by: Nicole Wood *For Family Forum dates, please contact Sandy or Kellie at Child Development Watch. The Compassionate Friends Contributed By: Robin Fantl, ACSW CDW Senior Medical Social Work Consultant Loss affects all of us. It can be personal like the loss of a job or shared by many such as 9/11. Loss changes who we are and how we feel about ourselves. Loss makes us think about our lives, priorities and dreams. It can affect how we live and what makes us happy. A death of any family member changes the family. The death of a baby or child tests our coping skills. Help is often needed to cope with the emotions we feel when a baby or child dies. When a baby dies the family needs ongoing care and compassion. They need to tell their story. They need someone to listen to their memories and the dreams they had for their child. Reaching out to families whose child has died is the mission of The Compassionate Friends. The Compassionate Friends is a self-help group that offers support from others who have experienced the grief of losing a child. Chapters are open to all parents, caregivers, grandparents, siblings and friends who have lost a child of any age. The need for grief support can come soon after a death or months or years later. The Compassionate Friends is there because grieving is something we must all do in our own time and way. The goal of The Compassionate Friends is to assist with finding ways to help the death have meaning that can be used for good. The group offers understanding and friendship. People who have had a child die can relate to others with similar experiences and families can help each other heal. The Compassionate Friends began in England. Today there are chapters in all fifty states. Our local chapter meets the second (2nd) Tuesday of every month at 7 p.m. at the Modern Maturity Center in Dover. You do not need reservations and there is never a charge to attend. The Compassionate Friends accepts donations. Darcy Simms, with Chandler Funeral Home in Wilmington, arranges the monthly meetings in Dover. She can be reached at (302) 478-7100 for more information about the meetings. Your Family Service Coordinator also has information. INSPIRATION CORNER Don’t Quit When things go wrong, As they sometimes will When the road you’re trudging Seems all up hill When funds are low, And debts are high And you want to smile, But you have to sigh Rest if you must, but don’t you quit. Life is queer with its twists and turns As everyone of us sometimes learns And many a failure turns about When we might have won, Had we stuck it out. Don’t give up Though the pace seems slow You may succeed with another blow Success is failure turned inside out The silver tint of the clouds of doubt And you never can tell how close you are It may be near when it seems so far So stick to the fight when you’re hardest hit It’s when things seem worse That you must not quit. Author Unknown BOOK REVIEW We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen. A beautifully written and illustrated book about a young girl named Emily who has big dreams for her new brother Issac. When Emily learns that her brother has Down syndrome, she shares her feelings and concerns with her Dad. Then, Emily realizes that her brother Issac will be able to do all the fun things that she likes to do even though he was born with Down syndrome.