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CHILDREN WITH SPECIAL NEEDS Children with Special Needs groups encompass the recommendations for groups that address special needs, mommy and me for children with special needs, special education, children in hospitals, early intervention, transition from Early Start and child mental health. Each group determines if they will have a narrower focus (e.g., graduates of the neonatal intensive care unit, children with autism) or whether they will be open to any parent of a child with special needs. These groups address the need to understand the development of children who develop differently and help parents connect to manage stress. Target Participants: parents who have children with disabilities or chronic health conditions, parents of infants who were born prematurely or have/had extended stays in the neonatal intensive care units (NICU). Participants in the Children with Special Needs groups will have the opportunity to explore and discuss any topics that are relevant to having a child with or at high risk for a disability. Based on recommendations from the needs assessment, we will provide content on the following topics: • Challenging Behaviors – This topic will address concerns of parents related to understanding child behaviors such as tantrums, not listening, hitting and biting, and whether it is a result of the child's disability, and identifying when behaviors need professional follow up and who can provide those services. • Breastfeeding – This topic will address concerns of parents related to the special challenges of breastfeeding children with special needs (e.g., over-sensitivity to touch, poor suck/swallow coordination, increased length of feeding sessions), reducing stress related to breastfeeding, how to build pumping into your day, when to wean and ways to get benefits when breastfeeding isn't an option. • Family Life – This topic will address the concerns of parents juggling the needs of a child with special needs and the rest of the family. • Health care – This topic will address concerns of parents related to accessing health care for children with special needs, when to go to the doctor, communicating with providers and managing health records. • Interacting with Your Child – This topic will address concerns of parents related to bonding and attachment, types of interactions that support learning and development, "red flags" that a child may need assessment or intervention, differences in communication and play and interacting with a child when (s)he is in the hospital. • Job Preparation/Issues – This topic will address the unique concerns of parents related to having a child with special needs, such as the decision to return to work, giving up a job to take care of a child and balancing the demands of work and the child’s therapy needs. • Nutrition – This topic will address unique concerns of parents related to nutrition for children with special needs, such as picky eaters, appropriate weight gain for babies/children, managing g-tubes and food allergies. • Resources – This topic will address concerns of parents related to understanding service systems and finding resources in the community, where parents can go for help on a variety of issues and free and low-cost resources. • Safety – This topic will address concerns of parents related to safety for children who are medically fragile and/or have disabilities, such as preventing elopement (the child wandering away), identifying medical crises and self-injurious behaviors. • School/Preparing for Kindergarten – This topic will address the unique concerns of parents related to having a child with special needs, such as transition from Early Start, participating as a member of the individualized education program (IEP) team, helping a child succeed at school and communicating with preschools. • Self-Care (Managing Stress and Preventing Depression) – This topic will address concerns of parents related to the demands of caring for a child with a disability, balancing the demands of parenting and those of accessing care and services, the importance of self-care, finding time for yourself (and your other family members) recognizing the difference between “baby blues” and more serious mental health needs, and building your circle of support. • Sleep – This topic will address concerns of parents related to sleep issues for children and/or parents (e.g., getting sleep when your child doesn’t, managing equipment). • Understanding Development – This topic will address concerns of parents related to understanding how their child’s development may differ from that of typically developing peers, coping with feelings when their children don’t develop at the same rate as their peers, how to get more appropriate guidance and “red flags” that a child may need assessment or intervention. Sample Special Needs Group Agenda (for groups that would like recommendations) Session 1: Bonding and Setting the Group Agenda Session 2: Nutrition Session 3: Understanding Development Session 4: Self-Care (Managing Stress and Preventing Depression) Session 5: Breastfeeding (depending on the ages of the participants’ children) or Safety Session 6: School/Preparing for Kindergarten Special Needs – 2015 Funded by First 5 Los Angeles SPECIAL NEEDS BEHAVIOR CHALLENGES I Background Infants to 5-year-olds have a great deal to learn in a short period of time. Children’s health and development can affect how they experience and respond to their environment. Children whose health and development are not following a typical path have additional stressors that may result in abnormal responses and can lead to challenging behaviors. In addition, certain disabilities may affect social emotional development, which can result in behavioral challenges. Some of these conditions are: • Autism; • ADHD; • Experienced trauma/domestic violence; • Maltreatment; • Emotional disturbances; • Intellectual disability. Services that provide intervention for children with these challenges are available. These include regional centers, community mental health centers, school districts and early childhood education programs. However, identifying and negotiating the maze of services can be difficult for parents. It will be important for parents to learn about the supports that are available to them and become extremely knowledgeable about their child’s condition in order to be organized and strategic regarding the help (interventions) their child receives. An advocate is someone who speaks up for another, but another word for advocate is “champion.” While many parents of children with special needs must become aware of rules and resources to help their children, which leads to stress and frustration, they should remember that being a “champion” does not come from love of the process, it comes from love of the child. II Tips for Discussing Behavioral Challenges in Your Group Discussions in parent support groups will depend on the group needs and composition. Parents may want to discuss concerns they have about their child’s behavior, or the parents may want to discuss a specific challenging behavior. A parent may want advice about a frustrating behavior or want to know how to get certain services. This can all be very difficult to manage. Behavioral challenges are one of the more frustrating and isolating aspects of raising a special-needs child, and it may be necessary to have several sessions on this topic. It will be very important for you as the facilitator to bring the focus back to the parent to provide emotional support and offer more help outside the group (through your community partners) as needed. In your group, you can ask parents: • What kind of behavioral challenges are you having with your children? • Has anyone had any successes that reduced your child’s challenging behaviors? • Can anyone talk about how learning about your child’s condition has helped you? • Has anyone found a new resource that you would like to share? • What did your child do this week that reminded you of how much you love her/him? III Resources • Parenting children with challenging behaviors o Coping With Aggression http://www.zerotothree.org/child-development/challenging- behavior/coping-with-aggression-one-page-handout.pdf o Positive Discipline for Toddlers https://www.youtube.com/watch?v=sX0MQ5ZXVio o Little Kids, Big Questions http://www.zerotothree.org/about-us/funded-projects/parenting- resources/podcast/ • Beyond “Use Your Words!”: How Babies Begin to Develop Self-Control in the First Three Years Featuring Brenda Jones-Harden, Ph.D. o http://www.zerotothree.org/about-us/funded-projects/parenting-resources/podcast/ • Autism and challenging behaviors o Challenging Behaviors Tool Kit http://www.autismspeaks.org/family-services/tool- kits/challenging-behaviors-tool-kit o Introduction to Behavioral Health Treatments http://www.autismspeaks.org/science/resources- programs/autism-treatment-network/atn-air-p-behavioral-health-treatments o Products and Publications on Autism from Children’s Hospital L.A. http://www.uscucedd.org/index.php?option=com_content&view=article&id=360&Itemid=349 o Medication and Autism http://www.ct.gov/dcf/lib/dcf/behavorial_health_medicine/pdf/autism_and_medication_guide.pdf IV Red Flags and Where to Get More Help • Concerns about the child’s development or interaction with others o Talk to your pediatrician, be persistent o Go to www.cdc.gov/ActEarly or call 1-800-cdc-info o Find your local regional center http://www.dds.ca.gov/RC/RCzipLookup.cfm o Contact your local school district office of special education
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