SPECIAL NEWS FOR SPECIAL NEEDS Issue 8 Fall, 2004 We are so lucky to experience the change of the seasons. Summer is over and fall has arrived. School buses on the road, the leaves on the tree changing color, and bundling up in your favorite sweater are all signs that fall is really here. As our seasons are changing, we also have program changes to report. Sandy Ward, our downstate Family Support Specialist, has taken a new position within the state. She will be missed very much by our families and those who have worked with her over her many years of service in Child Development Watch-Birth to Three Program. In our fall newsletter, I have something for everyone including parenting classes, getting involved in New Scripts and information regarding the new Enhanced Watch and See program. Please feel free to call or e-mail your ideas and suggestions at the addresses listed below. Wishing you a safe and happy fall season. -Kellie McKeefery Family Support Contact Information NCC: Kellie McKeefery 302-995-8617 kellie.mckeefery@state.de.us KC/SC: 302-422-1335 Six week class designed for families of children with special needs Yvonne Naas, a Family Educator from Child Inc., will provide helpful information on discipline, coping with stress, parenting skills, dealing with emotions and listening skills. All of which are good skills for parents of children any age. Dates: 6 consecutive Mondays November 15, 22, 29 December 6, 13, 20 Time: 6:30-8:30 pm Place: Easter Seals conference room 61 Corporate Circle New Castle De, 19720 Child care will be provided and refreshments served Registration is required For more information or to register please call: (302) 255-9134 Register early, there is a 20 participant limit. You must attend all 6 classes Internet Resource http://theparentingworld.com/info/html/ Parenting World is a great website providing information and articles on parenting. The website includes articles addressing parenting issues of children with special needs. The website also provides information on behavior, health and education. Delaware Health and Social Services, Child Development Watch (CDW) to help children who are found to have only a delay in expressive speech. All other developmental areas (cognitive, motor, adaptive, social-emotional) are found to be age appropriate. Literature studies indicate that children with only expressive language speech delays and without significant risk factors generally develop normal communication skills by third grade. Therefore direct speech services for children with this delay and no other risk factors will not be offered. Instead these children will be included in a monitoring program called Enhanced Watch and See (EWS). As part of this program, a designated specialist on the CDW team will coach families on how to stimulate and encourage their child’s language by using opportunities in their daily routines. Use of community resources and activities will also be encouraged. Working with a speech pathologist, the Child Development Watch EWS coordinator will support the family through written materials, videos, consultation, etc. Families of children in Enhanced Watch and See will be offered: . Monthly contacts by the EWS program coordinator . Families will be asked to track their child's progress using the MacArthur Child Development Inventory. . Every 6 months the EWS program coordinator will review with families their child’s progress in increasing expressive language. Progress in language development is monitored over time. Re-evaluations will be scheduled as needed if a concern arises. If you have questions about this program, please contact your Child Development Watch family service coordinator. They Want to Know! By Jennifer Pulcinella (Lewes De) When I went to the New Scripts roundtable discussion, I wasn’t sure what to expect. I knew they needed the parents’ voice and I had been having problems with a lack of facilities in Sussex County. I was on a mission to make the people who can make a difference aware of the needs at the beach. (I think people upstate still think we are a summer destination, not a collection of hometowns.) At the roundtable, I met professors, students, deans, and health care professionals. We all had our own agendas, but we put them together and started the fire that has been throwing sparks all over the state. How can we represent the best interests of a child with special needs in all aspects of early intervention? Parents provide the real life aspect to textbook education. It’s one thing to learn CPR and another to perform it in a pinch. Some parents are co-teaching in college classrooms. There is a variety of courses from therapies to social sciences. The possibilities are endless. Claudia & I went to the Early Learning Center at the University of Delaware several times to help with a physical therapy course. The center is brand new and immaculate. We encountered one enthusiastic student after another. The playrooms have a viewing area where part of the group stayed while others just played with her. There were two types of students, graduate students who had to develop a plan of care and undergraduates observing. Claudia had a blast! She discovered new toys and was fawned over like a princess. And then it happened...” What would you like a therapist to know before coming to your house?” My mind flashed to that giant post it pad at the roundtable and there it was...” What areas would benefit from a parent perspective?” We had discussed how we need them to be on time, not overload us with exercise routines, etc. I had a whole list fresh in my mind because of that roundtable. It worked! The people that could make a difference actually wanted to hear what we had to say! Since then, I have been privileged to sit in with an Easter Seals program to introduce inclusion to select day cares in the state, two in my county! We waited 7 months to be able to do something to help our daughter and now we have a chance to affect the next generation of health care professionals and teachers. It’s amazing what a little communication does. New Scripts has meetings coming up, for more information contact: Michelle Lamers, Parent Coordinator (302) 999-7394 (mailbox #7) toll free at (888) 547-4412 (mailbox #7) Lamersmm@aol.com We need your help! Have you ever wanted to…. • Be involved in the professional development of early intervention service providers and educators. • Share your story in order to help new and future therapists and early childhood educators work more effectively with families. • Work with state program leaders to create and strengthen family centered systems in early childhood intervention. When my 10 month old daughter, Liz came home from the hospital on a ventilator in the spring of 1990, our Emergency Medical Services 911 system was a life line for Liz. Liz is now a high school student, who just happens to have some special health needs. Today families who have a child with a special health need may prepare for emergency situations through the SNAP program. Below is information for families who may wish to enroll. Beth Appenzeller MacDonald Special Needs Alert (SNAP) Coordinator Welcome to SNAP. Special Needs Alert Program S N A P You are not alone. What is SNAP? SNAP identifies children with special health care needs in the community. Prepare Before a 911 Call SNAP lets families meet with Emergency Medical Service (EMS) staff in their home before they have to make a 911 call. Who May Enroll? No family will be excluded if they feel they would benefit from SNAP. Any child with special emergency care needs may enroll. This includes, but is not limited to children with: tracheotomies, IV therapy, and feeding tubes. Participation is strictly on a voluntary basis. You may cancel enrollment at anytime. How to Enroll Your Child Call the Emergency Medical Services for Children (EMSC) Office 302-744-5415. Ask to enroll in the SNAP program. EMSC will contact the EMS agency and make arrangements for a non emergency home visit to meet the child and family. Together, the family and emergency medical service team will determine the child’s most important needs in the event of a 911 call. Let’s look at a SNAP call to 911 The family calls 911. The address is flagged in the 911 system when the call is placed from the home phone. All responding units are notified that this is a SNAP child. The emergency medical responders now have time to review the child’s special information and prepare for arrival to the home. This project was supported in part by grant number 1 H33 MC00112-03 from the Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. A Memo to All Families... Don’t spoil me. I know quite well that I ought not have all that I ask for, I’m only testing you. Don’t be afraid to be firm with me. I prefer it. It makes me feel secure Don’t protect me from consequences. Sometimes I need to learn the painful way Don’t be inconsistent. That confuses me and makes me lose faith in you. Don’t let me form bad habits. I have to rely on you to detect them in the early stages and be a role model. Don’t make me feel smaller than I am. It only makes me behave stupidly to prove how “big” I am. Don’t correct me in front of people.Praise in public. Chastise in private. Don’t be too upset when I say “I hate you”.It isn’t you I hate, but your power to thwart me. Don’t put me off when I ask questions. If you do, you will find that I’ll stop asking you and seek information elsewhere Don’t nag.If you do, I shall have to protect myself by ignoring you. Don’t make rash promises. Remember that I learn not to trust when promises are broken. Don’t tax my honesty too much. I am easily frightened into telling lies Don’t forget that I cannot always explain myself aswell as I should like. That is why I am not always accurate. Don’t ever suggest that you are perfect or infallible. It hurts and disappoints me to discover you are neither. Don’t ever think that it is beneath your dignity toapologize to me. An honest apology makes me feel surprisingly warm toward you. Don’t forget I love exploring.I couldn’t learn without it, so please put up with me. Don’t forget how quickly I am growing up.It must be very difficult for you to keep pace with me, but please do try. Don’t forget that I can’t thrive without lots of love and understanding. I need “hanging out” time and lots of affection. Please keep yourself fit and healthy. I need you and love you.Please don’t die early because you smoke, drink too much or use drugs. Because “stuff happens”, let’s stick togetherI believe in you. I need you and hope you believe in me. —Author Unknown B o ok Review The New Language of Toys: Teaching Communication Skills to Children with Special Needs by Sue Schwartz, Ph.D., and Joan E. Heller Miller, M.Ed. “The New Language of Toys is a fresh, hands-on approach to using everyday toys-both store-bought and homemade-to stimulate language development in children with special needs from birth through age six. When parents and teachers follow the book’s creative activities and toy dialogues, playtime becomes a fun, exciting, and educational experience.” Don’t tell me my fears are silly.They are real to me and you can do much to reassure me if you try to understand. Special News for Special Needs Issue 8 Delaware Health and Social Services, Child Development Watch Fall 2004