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 • Emotional support and help navigating the systems o Family Resource Centers http://www.familyresourcenetworklac.org/ o Parent training and information: § Team of Advocates for Special Kids http://www.taskca.org/ § Fiesta Educativa (for families of persons with disabilities) http://www.fiestaeducativa.org § Chinese Parents Association for the Disabled http://www.cpad.org

Special Needs – Behavioral Challenges – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS BREASTFEEDING

I Background Breast milk is the preferred feeding for almost all babies. Current recommendations state that babies should be breast fed exclusively for the first six months, with ongoing breastfeeding extending beyond the first year of life. Breastfeeding provides protections to babies and benefits to the mother, as well. For infants with special needs, the benefit might be even greater. Breast milk is easier to digest than formula and moves through the baby’s system faster. Infants with special needs often have challenges with digestion. Breast milk helps make babies smarter. Babies who receive breast milk are less likely to suffer from ear infections and colds. Mothers’ breast milk provides babies with protection and immunity from common illnesses. Breastfeeding also provides benefits for mothers: it reduces their risk for breast cancer and ovarian cancer, makes it easier to lose weight after the baby is born, and is more cost effective than formula feeding, saving families at least $1,200 in the first year of baby’s life. A breastfeeding mother’s milk supply is influenced by the baby’s demand for breast milk. The more a baby nurses and empties his/her mother’s breast, the more milk she will produce. Pumping can also help a mother produce more milk. The introduction of formula to supplement a baby’s diet will reduce a mother’s milk supply. When it comes to breastfeeding, there are some common concerns that all parents need to think about: • Sore nipples; • Mastitis (infection of breast tissue); • Use of medication; • Endurance and coordination; • Maintaining milk supply, while baby gains skills; and • Trying to juggle all the demands of life while also trying to fit in time to nurse and pump their breasts. Breastfeeding can be extremely challenging for infants with special needs. They may have difficulty latching on to the breast. Once latched to the breast, they may lack the coordination and endurance to breastfeed efficiently. Mothers may be asked to pump their breast milk.

Breastfeeding mothers often worry about whether their child is eating enough. Bottle-feeding makes it easy to know how much baby is eating. Ensuring appropriate weight gain may be an ongoing concern for children with special needs, and bottle-feeding may be more attractive to parents as well as primary care providers. When the baby feeds directly from the breast, they stimulate the mother’s nipple to produce breast milk. This means that the baby has to do a little “work” before s/he receives the breast milk. Bottles don’t require stimulation to deliver milk. Infants accustomed to bottle-feeding are sometimes described as lazy when parents try to transition them to direct breastfeeding.

Feeding is often the first type of relationship parents have with their infant. Preterm infants and infants with difficulty coordinating their oral motor skills may need to receive their nutrition via a feeding tube. Parents may experience a disconnection from the feeding process. This experience may leave parents depressed, frustrated and even angry. Skin-to-skin contact with their infant while the infant is being fed by a feeding tube can help the parent and infant reconnect. Preterm infants may require breast milk that has been “fortified” to enhance key nutrients. Mothers may worry about the quality of their milk.

II Tips for Discussing Breastfeeding in Your Group Breastfeeding and nourishing an infant is a topic that produces strong emotions. Sometimes mothers think they should automatically know how to breastfeed their infant, and that if they don’t they are failures. Mothers who are not able to breastfeed their children directly may also experience a sense of failure, feeling that they can’t give their children what they need. There are many reliable sources for breastfeeding and nutrition. You can provide this information to your group members. Try to identify what your group members are concerned about. In your group, you can ask parents: • How do you know when your baby is hungry? • What are some of the signs that indicate a baby is getting enough? • How do you know if your baby is growing well? • What are some challenges to pumping your breast milk? • What resources have you found helpful?

Mothers may want to discuss advice they have received about fortifying breast milk, storing breast milk and maintaining their milk supply. Parents may also want to discuss struggles they experience during breastfeeding.

III Resources • General breastfeeding o Breastfeeding information for mothers www.kellymom.com o Breastfeeding your child with special needs http://www.ok.gov/health/Child_and_Family_Health/Breastfeeding/Breastfeeding_Your_Baby _with_Special_Needs/ http://www.lalecheleague.org/nb/nbdisabled.html o Hunger and satiety cues http://www.kemh.health.wa.gov.au/services/breastfeeding/feeding- cues.htm o Information from Bright Futures nutrition and feeding in the first 5 months http://www.brightfutures.org/nutritionfamfact/pdf/ColorEng/INB5color.pdf o Breastfeeding Basics – an academic online resource about breastfeeding http://www.breastfeedingbasics.org o Kelly Mom.com – an evidenced blog written by an IBCLC on breastfeeding expectations and challenges www.kellymom.com o A video on common breastfeeding positions http://video.about.com/breastfeeding/Breast- Feeding-Positions.htm o Finding a breastfeeding support group http://www.llli.org/webus.html o Community breastfeeding programs and supports https://www.facebook.com/BreastfeedLA o Milk bank/donor breast milk https://www.hmbana.org Special Needs – Breastfeeding – 2015 Funded by First 5 Los Angeles

• Engorgement o Guidance on the prevention of engorgement http://www.breastfeedingbasics.com/articles/engorgement o Guidance on avoiding and treating engorgement http://www.whattoexpect.com/pregnancy/symptoms-and-solutions/breast-engorgement.aspx o Nipple pain and discomfort during breastfeeding. Guidance on discomfort during breastfeeding http://kidshealth.org/parent/pregnancy_center/newborn_care/breastfeed_discomfort.html • Food safety and food allergy o Collection and storage of breast milk http://www.womenshealth.gov/breastfeeding/pumping- and-milk-storage/ o Guidance on the collection, storage and thawing of breast milk http://www.cdc.gov/breastfeeding/recommendations/handling_breastmilk.htm • Going back to work, while breastfeeding o Information and guidance for breastfeeding mothers who are returning to work. http://www.workandpump.com o Laws that support breastfeeding in California http://www.cdph.ca.gov/HealthInfo/healthyliving/childfamily/Pages/CaliforniaLawsRelatedtoBre astfeeding.aspx#breastfeedingrights

IV Red Flags and Where to Get Help • Pain during breastfeeding o Contact lactation consultant; o WIC provides lactation support for any breastfeeding mother, even if she is not enrolled in WIC. • Changes in stooling (too little or too much) o Excessively stooling may be a sign of feeding intolerance; o Infrequent stools may be associated with changes in the diet. • Excessive choking or coughing with feeding o Babies may have difficulty coordinating feeding activities (swallowing breathing); o Milk may be flowing to fast. Changing positions may be helpful. • Feedings that are described as “stressful “ or “frustrating” o Babies may be “too hungry” to feed because of delayed response to hunger cues; o Baby may be doing cluster feeds; periods of time that they feed more frequently, for shorter intervals. This is typical behavior, however mothers and other caregivers may think that mother is not producing enough milk or quality milk. http://www.bellybelly.com.au/breastfeeding/cluster-feeding-when-baby-breastfeeds-in- clusters#.UxYD6v1lzlc • Medications o Some medications are not recommended with breastfeeding because it can transfer into the breast milk. This should be discussed with a doctor; o Some medications, such as cold medications that treat congestion can decrease maternal milk supply. This should be discussed with a doctor.

Special Needs – Breastfeeding – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS BREASTFEEDING TIPS

The first week o Mother produces colostrum. Colostrum is a thick, yellow sticky liquid that provides baby with protection against infection. It also contains properties that help babies gut to mature. o Mother’s milk will increase in volume. This is sometimes described as mother’s milk “coming in.” Mothers’ milk can be delayed by use of medications during the birthing process. o Poor latch during breastfeeding can cause nipple pain and damage. This is one of the primary reasons given by mothers who stop breastfeeding in the first week. o Mothers who are pumping their breast milk are encouraged to pump a minimum of eight times per day to get their milk supply well established. o Mothers who are pumping are also encouraged to pump in the early morning hours to capitalize on hormones like prolactin that increase during those hours.

The first month o Babies are still nursing frequently, between 8 and 12 times per day. It’s expected that babies are still waking up at night 1-2 times per night to feed. o Mother’s milk supply is relatively stable. o Mother may start pumping “extra” breast milk if she needs to return back to work.

The first 6 months o Babies are nursing less frequently and more efficiently, 8 to 10 times per day. o Babies are more aware of their surroundings and may become distracted during feedings. o Mother may be pumping during the day while at work and directly nursing at home. o Baby may start introduction to solids. Breastfed babies tend to be more accepting of new foods due to their exposure to different flavors via breast milk.

Approximately one in 1,000 women experience low milk supply. The reasons vary from anatomical differences to perinatal PTSD. There are also instances when the baby does not get to the breast due to feeding challenges. The loss of breastfeeding as a “typical activity” may be tragic for many mothers. They may worry about “bonding” with their babies. It’s important to validate all the roles of the parent: nurturer, teacher and protector. http://www.babycenter.com/0_when-you-just-cant-breastfeed_1172801.bc http://www.whattoexpect.com/first-year/breastfeeding/breastfeeding-guide/why-you-might-not-be- able-to-breastfeed.aspx http://www.babycenter.com/404_how-do-i-know-if-my-baby-and-i-are-properly-bonded_13621.bc http://www.whattoexpect.com/first-year/week-19/bond-with-bottle.aspx

SPECIAL NEEDS FAMILY LIFE I Background The entire family is affected when a child has special needs. This includes the parents, siblings, close and more distant relatives. The child(ren) may require multiple appointments, frequent or lengthy hospitalizations and therapists coming into the home. The child(ren) may also have behaviors that impact family life. This may put extra stress on the family and require more support from the immediate family and other relatives.

Parents may feel more stress. In addition to the greater toll that their children’s special needs take, they must also supervise their child(ren) more carefully. There are many ways that special needs may affect siblings. Siblings may feel like all the attention is focused on their sibling with special needs, and they may feel dragged along to appointments. Siblings may also feel embarrassed by their brother or sister’s behavior. Parents may have less time and money for activities for their other children. Parents will have to work harder with children who have difficulty playing and developing positive relationships with their siblings.

When children have challenging behaviors or other special needs, families may also feel isolated. It may be difficult to take the children out in the community or to family functions. Parents may have a hard time finding and trusting babysitters or respite providers, so they might find they have less availability for “adult time.” Parents may also find themselves in conflict with relatives’ parenting philosophies and practices that are not the same as their own.

II Tips for Discussing Family Life in Your Group Having children with special needs can be very stressful for families. It may make home life more chaotic for everyone. Parents may be worried about their child’s health and/or behavior and also about their other family members. Parents may feel judged by family members and/or unwelcome at family events. Parents may feel uncomfortable discussing their concerns about family life. In your group, you can ask parents: • What are some of your concerns about your child’s special needs and your other children/family members? • What recommendations do you get from family members? How do you feel about the recommendations? • How do you find time to spend with your other children? • What helps your other children/family members when your child is having a difficult time?

III Resources • Tips for parenting young children with challenging behaviors http://www.austinchildguidance.org/for-parents/parenting-articles-tips/tips-for-parenting-young- children-with-challenging-behaviors/ • The Sibling Support Project (SibShops) http://www.siblingsupport.org/ • The Sibling Support Project Store http://astore.amazon.com/thesibsuppro-20 (in partnership with SibShops) • Super Sibs (for siblings of children with cancer) http://www.alexslemonade.org/campaign/supersibs • Siblings of Kids with Special Needs https://www.med.umich.edu/yourchild/topics/specneed.htm • Healthy Children (AAP) www.healthychildren.org • ARCH National Respite Network and Resource Center http://archrespite.org/home

IV Red Flags and Where to Get More Help • A parent shares that his/her child hurt a younger or older sibling o Talk to the pediatrician; o Investigate behavioral health services through regional center or private insurance; o Investigate early childhood mental health services (behavior management). • A parent shares that (s)he is depressed (unhappy) about judgment or rejection from his/her family o Talk to your pediatrician about behavior strategies; o Investigate early childhood mental health services (behavior management); o Discuss whether the parent may benefit from counseling.

Special Needs – Family Life – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS HEALTH CARE I Background Children with special health care needs are challenging. Keeping them healthy is the responsibility of parents and other caregivers. Parents may benefit from information and support on the importance of regular checkups as well as follow-up visits with specialists. When meeting with their child’s primary care provider, parents find out about growth, weight gain, immunization and general health concerns. When parents meet with their child’s specialty team, the visit is more focused around that area.

Some common health practices parents need to think about are (see attachment for more information): • Immunizations; • Medications; • Hand washing/infection • Home remedies; and control; • Emergency/disaster • Food safety; preparedness. • When to take child to the doctor;

Parents benefit from learning the importance of well-child visits, current information about vaccinations, and when to be concerned and access medical advice. While it is expected that parents will worry about their child’s health, sometimes they worry so much that it may interfere with a child’s growth and development. For example, if a parent is worried that their child might get ill, they may keep him/her home from school. This puts added stress on the parents as the primary caregivers, when they may need assistance.

II Tips for Discussing Health Care in Your Group Health is a broad topic. There are many things that can be discussed based on the age of the baby and types of health concerns. There are many resources that include health tips and information. You can provide this information to the members of your group (see the Tips handout and the Resources section). Try to identify what your group members are concerned about. In your group, you can ask parents: • How do you schedule checkups? • What should you expect at the well-child visit? • What are some of your health concerns? • What are things that you need to think about now that your child is older? • How often do you need to see your child’s specialty team? • Where do you go for health-related information? This may be a time when parents have questions about how to access a new or different service for their child. Parents may also want to discuss what they worry about when their child has an acute or chronic illness.

Charting growth: Visits usually begin with weight, length and head measurements that are plotted on a chart. You can use this to see how your child’s growth compares to others at the same age. Children with special needs may grow differently than typical children. It’s important to look at the growth trend, rather than one fixed point in time. Physical examination: A thorough physical exam – from head to toe – is done. The provider will look for signs that your baby is healthy and meeting normal physical development goals. Your child’s specialist may require additional tests to see if medication has achieved therapeutic levels. General development: The provider will check to make sure your child is meeting developmental goals. Many children with special needs demonstrate delays in one or more areas. The provider may use age equivalents to guide parent’s expectations for their child. Nutrition: Your provider will give you advice about feeding, vitamins and other nutritional issues. As your child grows, you'll be asked questions about his/her eating habits, as well. General discussion: The provider will also want to tell you what to expect in your baby's growth during the coming months. You'll also talk about other issues, such as the use of car seats and how to keep your children safe in their environment. You may also be asked about how you and your family are caring for and interacting with the special-needs child. Be sure to ask any questions you have during the visit, no matter how small. If you are feeling run-down, stressed or depressed, don’t be afraid to talk about it with the health-care provider. Tests: Lab tests are not usually needed at these visits. During the annual health checkup, your child may be tested for anemia (low blood iron) with a simple finger-prick test. A child will need a blood test for lead poisoning and a tuberculosis skin test before entering school. Immunizations: At different ages, your child will need different types of vaccinations during these visits. • Information about immunizations o Immunizations and schedules for infants and children http://www.cdc.gov/vaccines/schedules/easy- to-read/child.html o Safety and immunizations http://www.cdc.gov/vaccinesafety/Vaccines/Common_questions.html

III Resources General health • Free or Low-Cost Health Clinics In Los Angeles County http://cretscmhd.psych.ucla.edu/healthfair/HF%20Services/LinkingPeopletoServices_CLinics_List_bySPA.pdf If you do not have health insurance and are not sure if you are eligible, call the Los Angeles County Office of Women’s Health Multi-lingual Appointment and Referral Hotline 1-800- 793-8090. Friendly operators speak English, Spanish, Armenian, Korean, Mandarin, Cantonese and Vietnamese, and can help. Appointments can be made for free Pap tests, clinical breast exams and mammograms in a nearby community clinic or county facility; Heart disease is the No. 1 killer of women. Women can get a free heart disease risk assessment over the phone. • Child Health Disability Prevention Program – Based on age, a child is entitled to 15 or more exams per year. Services include regular complete health checkups and shots, diagnosis and treatment (including hospitalization) for conditions found during the health checkup, and prescription medicines. http://www.ladpss.org/dpss/health/children/chdp.cfm?persona=children • Children’s No Cost Medi-Cal Services (Percentage Programs) – Comprehensive preventive care services, primary and specialty care, medical office visits, vision and dental care, mental health services,

Special Needs – Health Care – 2015 Funded by First 5 Los Angeles

hospitalization and prescription medicines. http://www.ladpss.org/dpss/health/children/nolow.cfm?persona=children • California Children’s Services – Diagnosis and treatment of CCS eligible conditions at CCS-approved hospitals, Special Care Centers (CSS) and the Medical Therapy Program (MTP). Provides medically necessary care and case management to infants, children and adolescents meeting program eligibility requirements including hospitalization and in-home nursing services. List of qualifying criteria: http://www.dhcs.ca.gov/services/ccs/Pages/qualify.aspx List of eligibility criteria: http://www.dhcs.ca.gov/services/ccs/Pages/medicaleligibility.aspx • Finding a pediatrician to care for your child http://www.healthychildren.org/english/tips-tools/find- pediatrician/pages/pediatrician-referral-service.aspx Emergency preparedness/ CPR • American Red Cross http://www.redcross.org/take-a-class • American Heart Association http://www.heart.org/HEARTORG/CPRAndECC/FindaCourse/Find-a- Course_UCM_303220_SubHomePage.jsp • Keck School of Medicine http://keck.usc.edu/en/Education/Academic_Department_and_Divisions/Department_of_Emergency_ Medicine/CPR_Course.aspx Taking your child to the doctor • Preparing for a visit to the specialist – It’s hard to remember the concerns that were circling in someone’s brain at 2 a.m. when their child was sick or ill. Preparing for the visit may include writing down questions as well as observations of what the parent has seen. Talking to Your Child’s Doctor: http://www.caringinfo.org/files/public/brochures/Taking_With_Your_Child_s_Doctor.pdf http://kidshealth.org/parent/general/sick/talk_doctor.html • A care notebook is a useful way to organize a child’s medical history. It is a good strategy that helps parents share information between their child’s providers. http://www.medicalhomeinfo.org/for_families/care_notebook/

IV Red Flags and Where to Get More Help Child stops breathing or coughs/gasps during sleep • Talk to your pediatrician. Baby spits up after every feeding • Talk to your pediatrician. Child is lethargic (sluggish) and listless (limp and unresponsive) for prolonged period • Talk to your pediatrician. Child makes jerking movements, for no apparent reason • Take child to the hospital emergency room. If you can video the observed behavior, that will help doctors to know what happened. Child has not produced a wet diaper in more than 12 hours. Mouth and lips look dry • Take child to the pediatrician. Child has a fever (over 100.4 F) and looks very sick, is drowsy or very fussy, has a weakened immune system, seizure or other symptoms, such as rash, sore throat, headache, stiff neck, or earache • Take child to the pediatrician.

Special Needs – Health Care – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS HEALTH CARE TIPS

I General Guidelines • Supervision o Children need constant supervision. Either a caregiver should be watching them or they need to be in a secure place like a crib or playpen. o Never leave a baby alone on a raised surface (like a changing table or high chair). Use the safety strap. • Sleep o Sleep is important for self-regulation. If your child has irregular sleep patterns, talk with your pediatrician. o Sleep routines may help older children get to sleep and stay asleep. • Medications o Read medication labels. o If a child vomits medication, contact pediatrician BEFORE you attempt to give another dose. o If child is taking medications, keep a list of the medications and what they are for. • Emergencies o Take a child CPR class. o Put together an earthquake kit and develop an emergency preparedness plan.

II Going to School Parents may request accommodations for the child with special needs with a 504 plan http://www.ncld.org/disability-advocacy/learn-ld-laws/adaaa-section-504/section-504-rehabilitation- act-1973 Children who qualify for a 504 plan may also be eligible for an Individualized Education Program (IEP). Health goals can be placed within an IEP. Parents may have questions about which type of plan to use http://www.ncld.org/disability-advocacy/learn-ld-laws/adaaa-section-504/section-504-idea- comparison-chart Children with food allergies may require additional help to remain safe at school. • School policies for keeping children safe: https://www.foodallergy.org/document.doc?id=135 • Resources for parents: http://www.foodallergy.org/managing-food-allergies/at-school

SPECIAL NEEDS INTERACTING WITH YOUR CHILD I Background Interacting with a baby/child involves both an emotional connection (bonding) and supporting the baby or child’s social, emotional and intellectual development through play and care. Children start learning early and early interactions help set the stage for future success. Secure connections help babies and children develop into emotionally healthy adults. Early play, interaction and exploration lead to improved learning and self-control. There are many fun things parents can do to promote healthy development and learning.

Children with special needs, just like their non-disabled peers, need interaction with their parents. However, their special needs may make interaction a little more difficult. Things that can interfere with bonding and interaction include: • Long or frequent hospital stays (NICU); • Behavior • Sensory sensitivities; challenges; • Fatigue (both child and parent); • Parent concerns and fears; • Physical limitations; • Vision and/or hearing impairments; • Medical equipment or technology; • Difficulty with communication. • Difficulty engaging the child;

Parents may have to approach their interaction with their child with special needs differently than they did with their other children. It may take longer for a parent to figure out or become “tuned into” this child’s needs and interests. This process can be harder if parents are having difficulty understanding or accepting their child’s special needs. Parents may also have to seek out resources that can help them play with their child. For example, many family resource centers have toy loan programs in which parents can try out toys that meet the developmental or special need of their children (with recommendations for how to use the toys). Learning about their child’s special needs can help parents feel more comfortable playing and interacting with their child.

II Tips for Discussing Interacting with Your Child in Your Support Group Parents are sometimes unsure how much attention is too much attention. Your group can talk about the benefits of giving babies/children care and attention. This can also include a discussion of the difference between appropriately protecting your child and over protecting them. Members of your group may also want to discuss barriers to interaction and bonding. This is an opportunity for the members to share how they are able to attend to their baby/child’s needs and also attend to other demands. You can start discussions by asking: • What are some activities that you like to do with your babies/children? • Are there times that it feels hard to interact or play with your baby/child? What are some things that can help?

• What does your baby/child do that indicates that he/she loves spending time with you? • How do you include playing with your baby into your day? • How do you think playing with your baby will help in his/her development?

III Resources • University of Missouri College of Education – Parents of Children with Special Needs http://education.missouri.edu/orgs/parentlink/Parents%20of%20children%20with%20Special%20N eeds.php • Web MD Playtime for Children With Physical Disabilities http://www.webmd.com/children/features/playtime-physical-disabilities • Kaiser Permanente Bonding with your special needs child http://mydoctor.kaiserpermanente.org/ncal/Images/GEN_Bonding%20with%20your%20special%20 needs%20child_tcm63-13819.pdf • Synapse Bonding with your Child (autism) http://www.autism-help.org/family-bonding-child.htm • Shane’s Inspiration http://www.shanesinspiration.org/playgrounds/ • The Unplanned Journey http://www.parentcenterhub.org/repository/journey/ • Family Resource Center Network of Los Angeles County (FRCNLAC) http://familyresourcenetworklac.org

IV Red Flags and Where Families Can Get More Help Parents may be reluctant to admit that they are having a hard time bonding or interacting with their child. Sometimes they may say things like, “I don’t think my child likes me,” or “My baby refuses to be held,” or “My baby just lies there and doesn’t smile.” These can be indications that parents need some help learning to interact with their child. Parents have concerns about a child’s development or interaction • Discuss this with the pediatrician; • Consider a developmental screening or assessment (regional center); • Talk with their regional center service coordinator or family resource center. Parent and baby don’t seem to be “in tune” with each other • Parenting classes; • Learning about the child’s disability • Early childhood mental health support Parent may be depressed or overwhelmed • Mental health care A parent expresses reluctance to love their child because the child might die • Mental health care • Talk with the child’s health care team regarding the child’s prognosis; • Parent-to-parent support (Family Resource Center).

Special Needs – Interacting with Your Child – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS TIPS FOR INTERACTING WITH YOUR CHILD

Things parents can do to bond and interact with their baby/child include: • Breastfeeding o If the baby can’t breastfeed, they can still hold the baby against their bare chest while feeding. • Skin-to-skin contact • Carrying/holding the baby • Touching/massaging the baby/child • Talk, sing and read to the baby/child • Describe the baby/child’s emotions (“You seem mad”) • Respond to a baby/child’s cries • Follow the baby/child’s lead o Be aware it isn’t a good time to play if the child is tired or irritable; o Be aware of how the baby/child likes to be touched. • Use lots of firm physical touch, bear hugs, or baby massage in a way that won't cause sensory issues* • Physically hold the child face to face.* • Get down to the child's level to make eye contact when talking.* • Work at meeting the ''match'' of the child. Encourage the child to do those things for which the child is ready and capable. Try not to expect too much too soon, frustrating both child and you.* • Speak in a loving and caring manner to child, helping the message of bonding to get through. • Play with the child at the child's level of understanding and ability.* • Visit universal playgrounds (Shane’s Inspiration http://www.shanesinspiration.org/playgrounds/ ) • Talk to other parents who have children with similar special needs • Visit a family resource center (Family Resource Center Network of Los Angeles County – FRCNLAC http://familyresourcenetworklac.org)

*Bonding with Your Child, Autism-Help.org

SPECIAL NEEDS JOB PREPARATION/ISSUES

I Background In today’s busy world, the competing demands of work and family life can be challenging. Parents often have many responsibilities caring for their children, running the household, working in the community and oftentimes taking care of extended family members. Working outside the home has many benefits, but it may be difficult to have a balance between work and family.

Benefits include financial support and health care insurance. A working parent contributes toward the bills, but also has some independence outside their roles as parent and partner. For some parents, this is the only “me time.” They value the distraction from daily stresses that work can provide. Many parents report they develop friendships and support within the work setting.

Challenges for parents include finding child care when at work, finding different child care when child is ill, missing functions at the preschool, dealing with job stresses and juggling schedules with partners to see that the children’s needs are met. When the workplace is far from home, parents may not have much time during the week to spend with the family. They also may not have enough time to get to know their children’s child care providers and preschool teachers. Some parents report, they “never feel caught-up” at home or at work. It can be a struggle for parents to have any “alone time” together, feeling guilty about not including the children. Breastfeeding is an added challenge if the workplace does not support milk expression times, and a place to pump and to keep the milk. Managing the morning with child care, preschool and work seems to always be a stressful time.

Parents of children with special needs have added challenges that include: • Financial hardship; • Scheduling and coordinating medical and therapy appointments; • Being on emergency call; • The time it takes for daily care; • The lack of predictability of any day’s schedule; and • The pressure to stay at home to care for their children.

Mothers report the following ways help to manage time in the morning: • Start the day 20 minutes earlier; • Prepare coffee and lunches the night before;

• Decide what everyone is wearing the night before; and • Resist looking at texts, e-mails and television.

II Tips for Discussing Job Preparation/Issues in Your Group You may be able to start a discussion by asking, “How is balancing home responsibilities and work a challenge for you?” You may not want to start your support group with this topic, but instead wait until people have started feeling more comfortable in the group.

In your group, you can ask parents: • Are you finding it difficult to do everything you need to do and work, too? • Where do you go for help and/or support when you are balancing work and home? • Is finding work a challenge for you?

III Resources • Red Tricycle: Los Angeles Moms Groups & Clubs http://redtri.com • Working Moms Meet-Up Groups in Los Angeles www.workingmoms.meetup.com • Family Resource Center Network of Los Angeles County www.familyresourcecenternetworkla.org • Directory of Support Groups for Parents and Family Members of People with Developmental Disabilities in Los Angeles County www.areaboard10.org • Call 2-1-1 for Pre-job Guidance and Job Search Information • Self-Care Tips for Parents (see Appendices)

IV Red Flags and Where to Get More Help For some parents, combining care of a young child with a disability and working at the same time becomes an impossibility. Many employers will not tolerate the time it takes away from the workplace for medical and therapy appointments. In other cases, parents may have difficulty finding providers to take care of their children while they are at work. For these families, it might make more sense to use In-Home Supportive Services (IHSS) and Supplementary Security Income (SSI) benefits, if those are options for them.

If parents need more help, they can contact:

• In-Home Supportive Services (IHSS): Nuts and Bolts http://www.disabilityrightsca.org/pubs/PublicationsIHSSNutsandBolts.htm 1-800-776-5746 • Supplementary Security Income (SSI): Benefits for Children with Disabilities – Social Security www.ssa.gov/pubs/EN-05-10026.pdf

Special Needs – Job Preparation/Issues – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS NUTRITION I Background Children with special needs include those who may have unique nutrition concerns, as well. All children require energy, protein, vitamins, minerals and trace elements to grow. Ensuring that our children receive all of those essential nutrients is one of the greatest challenges for ANY parent. The addition of dietary restrictions or enhancements may be overwhelming for some parents. Some common nutrition parents need to think about are: • underweight; • medication; • picky eating; • overweight; • food allergy; • nutrition supplements; and • constipation; • food intolerance; • gastrostomy tube feedings.

While it is expected that parents will worry about their child’s diet, they can worry so much that it creates power struggles at mealtimes. In the interest of encouraging a child to eat healthy foods, parents may make other foods appear more desirable. It’s more important for a child to eat a balanced diet. Feeding your child is something all parents need to do. For parents of children with significant disabilities, it may be the one “normal” thing that a parent has with their child.

II Tips for Discussing Nutrition in Your Group How we feed and nourish our children is influenced by our culture and our beliefs. When talking about nutrition, it is critical to acknowledge the influence of culture on food selection and preparation. Foods with the same name but from different cultures may have extremely different ingredients. Foods that are served warm in some cultures may be served uncooked in others. Some cultures have beliefs about the different health properties of foods. Foods may be described as “cold,” “warm” or “hot,” based on the properties of the foods, versus how it is served. When talking about foods and nutrition, use broad open- ended statements. Ask participants to describe how the food is made and how the food is used in their culture. Try to identify what your group members are concerned about. In your group, you can ask parents: • What are some of the typical foods served in your home? • What foods does your child like? • What foods are challenging for your child? • What foods would you like to eat with your child? • What strategies have been helpful for supporting your child’s nutrition? This may be a time when parents want to share their concerns about the most common nutrition concerns: underweight, overweight and constipation. Parents may also want to discuss special diets or foods that have been helpful or challenging for their child.

III Resources • Nutrition guidelines for the general public http://www.choosemyplate.gov/kids/ParentsEducators.html • General nutrition resources for children with special needs http://fnic.nal.usda.gov/consumers/ages- stages/special-needs-kids • General nutrition resources for feeding children http://www.ellynsatterinstitute.org/store/index.php?route=product/product&product_id=51 • Nutrition recommendations for children with special needs and conditions: The USC UCEDD published a strategies manual for use by health care providers as well as lay people. The manual provides handouts as well as guidance for specific issues. http://www.uscucedd.org/index.php?option=com_content&view=article&id=166&Itemid=230 • Underweight is typically defined as children having a low weight for their height. Parents may hear “Your child has a low BMI (body mass index).” The causes of underweight in children can include: o Inadequate intake of food (child with cleft palate or sensory challenges); o High levels of physical activity (child with cerebral palsy); o Poor absorption of nutrients (child with cystic fibrosis). • Having an underweight child often results in stress for the entire family. Parents may try to create multiple meals to ensure their child “eats something.” • Overweight is typically defined as children having a higher weight for their height. Parents may hear “Your child has a high BMI.” The causes of being overweight in children with special needs can include: o Excessive intake of food (child with Prader-Willi syndrome); o Slow metabolism (child with Prader-Willi or Down Syndrome); o Medications (child who is taking steroids). Having an overweight child can be seen as a mixed blessing. Overweight children are often perceived as more “healthy” than underweight children. For some parents of children with special needs, this can be seen as a desirable outcome. Excessive weight in children with special needs can affect their ability to participate in therapy due decreased mobility and low endurance. • Constipation is typically defined as infrequent, hard stools. Parents may describe stool as “goat turds” or “like hard pebbles.” The causes of constipation in children with special needs include: o Inadequate intake of fluid (children with swallowing problems); o Decreased physical activity or low tone (children with mitochondrial disorders); o Inadequate intake of fiber (children with picky eating habits). Constipation is a common issue that is undertreated. Parents may want to talk about “natural” remedies over medical management due to concerns about their child “becoming dependent” on the medication. • Medication use is frequently reported in children with special needs. The most common affects of medication on nutrition are change in appetite, taste changes and the absorption and utilization of nutrients. Some common nutrition and medication concerns include: o Increase in appetite (children taking steroids); o Decrease in appetite (children taking chemotherapy medication); o Decrease in nutrient absorption (children taking seizure medication).

Special Needs – Nutrition – 2015 Funded by First 5 Los Angeles

Medications are often overlooked when looking at a child’s nutritional health. Parents may under report nutrition -related problems with medication, due to lack of awareness. Parents may have questions about who they can talk with about the medications their child takes. • Food allergy occurs when your body produces an immune response to a specific food or item. A food intolerance is when your body is not able to use a specific nutrient within a food. Examples of each include: o Celiac Disease (gluten intolerance, the body is unable to breakdown gluten); o Lactose intolerance (the body is unable to digest lactose); o Peanut allergy (the body produces an immune response, physical manifestation includes hives and a rash. For most food allergies and intolerances the main treatment is to avoid the offending food or ingredient. Parents need to become food label detectives in order to keep their child safe. Parents may have questions about how to keep their child safe at school. • Picky eating or selective eating is one of the greatest challenges for any parent. When the child has special health concerns, the challenge becomes monumental. The reasons a child may become a picky eater are often a chaotic mixture of health concerns and child behavior, such as: o Sensory or texture challenges (children with autism;) o Chewing problem (children with Pierre Robin sequence or cavities) . Parents of children who are picky eaters may put inordinate pressures on themselves and their child at mealtimes. Parents may need support on strategies to keep mealtimes pleasant for all. • Nutrition supplements typically provide additional nutrients that may be low or missing in a child’s diet. The most common form of supplements are multivitamins. When children require more support, their medical team may recommend an oral supplement that provides energy and protein, as well as vitamins. Children who may benefit from the use of oral supplements include: o Children with high energy needs (children with cancer); o Children with extreme feeding challenges (children with cerebral palsy or cleft lip and palate). Parents often express concern about cost of supplements when they are not covered by insurance. Parents may benefit from working with a dietitian to come up with other strategies to meet their child’s needs. • Children with severe feeding problems may require the use of a gastrostomy feeding tube (g-tube). Feedings are delivered via a tube directly to the child’s stomach to ensure adequate intake. The placement of a g-tube is a very hard decision for many families. Children who may benefit from the use of a g-tube: o Children with high energy needs (athetoid cerebral palsy); o Children with severe GI problems (short gut syndrome). Parents of children with feeding tubes may express concern about when their child will eat normally. They will likely have questions about what they can do to support their child in oral feeding.

Special Needs – Nutrition – 2015 Funded by First 5 Los Angeles

IV Red Flags and Where to Get Help Feeding • Frequent coughing or gagging during meals; • Meals that routinely take more than 30 minutes; • A lot of liquid or food falling out of the mouth. Elimination • Foul (like something died) smelling stool; • Oily streaks in the toilet bowl after a bowel movement; • Recurrent vomiting for more than 12 hours; • No wet diaper (toddler) or urination in more than 12 hours. Diet • Multiple food allergies (more than two foods); • Exclusion of more than two major food groups (like no meats and dairy); • Multiple medications (more than three medications). Discuss any of the above with the pediatrician

Special Needs – Nutrition – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS SAFETY I Background Babies and children with special needs often require more supervision than children without special needs. In addition to thinking about things like car seats, childproofing their home and water safety, parents also have to think about what other preparations and adjustments they have to make because of their children’s disabilities or other special needs. Although all babies and young children require supervision, parents of children with special needs may have to: • Provide supervision for a longer time; • Provide more supervision; • Maintain a higher state of alertness; • Manage medical equipment or procedures.

Some common safety areas parents need to think about are (see Tip Sheet): • Car safety; • Food; • Emergency/disaster • Sleep; • Choking; preparedness; • Supervision/ • Medication; • Home safety/ caregivers; • Water safety; childproofing. • Toys; • Community safety;

While it is expected that parents will worry about their children’s safety, sometimes they worry so much that it may interfere with a child’s growth and development. Also some parents are so worried their child may have to go to the hospital or have another type of crises that it is hard for them to enjoy their children when they are healthy and at home. Addressing safety issues and preparing for crises is a way that parents can feel more relaxed, even if their children have higher needs.

II Tips for Discussing Safety in Your Group Safety for children with special needs is a broad topic. There are many things that can be discussed, based on the age of the child, the child’s developmental level and types of safety concerns. There are many resources for safety tips and information. You can provide this information to the members of your group (see the Tips handout and the Resources section). Try to identify what your group members are concerned about. In your group, you can ask parents: • What are some of your safety concerns? • What are things that you need to think specific to your child’s special needs? • Where do you go for safety information?

Parents may also want to discuss how to prepare for emergencies like earthquakes. One thing that you can discuss in your groups is filling out an emergency information form and also having an emergency plan that takes their children’s special needs into account.

III Resources • General safety o Safety Tips for Children with Special Needs http://www.promedica.org/workfiles/patient_resources/education/tch_special_needs.pdf o 20 Tips For Keeping Your Child With Special Needs Safe In Your Home http://www.friendshipcircle.org/blog/2013/10/03/%E2%80%A820-tips-for-keeping-your-child- with-special-needs-safe-in-your-home/ o Healthy Children (AAP) www.healthychildren.org • First 5 California http://www.first5california.com/parents/health-center.aspx?id=7 • Emergency preparedness o American Academy of Pediatrics Emergency Information Form for Children with Special Needs http://www2.aap.org/advocacy/chfdataform.pdf • Car safety o Automobile Restraints for Children with Special Needs http://carseat.org/Resources/173_spec_needs.pdf

IV Red Flags and Where to Get More Help • I don’t have extra medication for my child’s emergency kit o Talk to your pediatrician. • I can’t sleep because I am worried my child will stop breathing o Talk to your pediatrician to see if the child has breathing concerns and if so, how to address them; o Some parents need counseling because they are very worried even if everything is okay. • I’m exhausted because I have to supervise my child day and night o If the parent is a regional center client, (s)he can talk with the service coordinator about this. • My child cannot use a standard car seat because of prematurity or other special need o Kohl’s Safety & Injury Prevention Program – Children’s Hospital Los Angeles http://www.chla.org/site/c.ipINKTOAJsG/b.6216247/k.B067/Kohls_Safety__Injury_Prevention_ Program__Car_Seat__Inspections__Classes__Loaner_Program__Seats_for_Special_Needs.htm# specialneeds

Special Needs – Safety – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS SAFETY TIPS

• Car safety o Use a car seat that is the correct size for your baby and/or meets your child’s special needs. - Kohl's Safety & Injury Prevention Program – Children’s Hospital Los Angeles http://www.chla.org/site/c.ipINKTOAJsG/b.6216247/k.B067/Kohls_Safety__Injury_Prevention_ Program__Car_Seat__Inspections__Classes__Loaner_Program__Seats_for_Special_Needs.htm# specialneeds • Caregivers o Parents should make sure that everyone who cares for their child is trained to meet his/her special needs; o Parents should make sure that caregiver’s homes are safe for their child. • Choking hazards o Children with developmental disabilities may continue to put things in their mouths past babyhood. Make sure they have safe things to chew. • Community safety o Parks and playgrounds should have fences around them to prevent a child from running off; o Use age appropriate playground equipment; o Parents should hold their children’s hands, carry them or have them in a stroller if they are near a street. • Emergencies o Fill out the emergency information form (and keep it current). Take it with your to doctor’s appointments and to the emergency room; o Put together an earthquake kit and develop an emergency preparedness plan (make sure you have a three-day supply of all medications); o Parents should make sure at least three people know how to take care of their child (and know how to use any equipment). This will allow someone else to provide good care for the child, if a parent is injured during the emergency; o Parents should sign up for the Specific Needs Disaster Voluntary Registry. https://snap.lacounty.gov/index.cfm?fuseaction=app.registryLogin&CFID=23399&CFTOKEN=7e7 8c72fb57779c2-C9922A62-EDA1-B047-2876E4F10C3DFFE6 • Exposure to illness o Children who are medically fragile may get sick more easily – keep them away from children and adults who have contagious diseases. • Medical equipment o Parents should learn how to use the equipment; o Parents should know where to get the equipment fixed if it breaks.

• Medications o Parents should keep a list of all the medications their child takes and share this list with all doctors and pharmacists. • Supervision o If a child needs to be supervised at night, take sleeping shifts with your partner; o Talk with your regional center service coordinator about respite and/or nighttime supervision. • Toy safety o Give your child age and developmentally appropriate toys. • Water safety o Parents should always supervise their children when they are in or near water (bath, pool, etc.); o Always check the temperature of bath water.

Special Needs – Safety – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS SCHOOL

I Background School has a particular importance to children with special needs. Just like their non-disabled peers, it is the place that they go to learn, socialize and prepare for adult life. But for children receiving special education services, school offers another important role – it is the place where they receive most of their services and supports. Not all children with special needs will need special education services. Eligibility is based on the child’s need for special education services to benefit from their educational program.

Special education is divided into two parts: Part C (Early Start) services for children birth to 3 years old (usually provided by the regional center), and Part B (school-age services) for children age 3 to 18 (in some cases 22), which are provided by the local school district. Families often find a big difference between Early Start and school-age services and how they are provided.

Parents are full members of their child’s planning team. Planning takes place at an Early Start Individual Family Service Plan (IFSP) or an Individualize Education Program (IEP) meeting for children over age 3. It is important for parents to learn about special education and their rights. This helps them participate in their child’s IEP/IFSP more effectively (see Section III Resources for ways in which parents can become educated about special education).

It is also important to help your child prepare for school. Children in special education can start preschool at age 3. Parents have the choice of putting their child in a preschool class that has children both with and without disabilities (inclusion) or in a class that has only children with disabilities (special day class).

II Tips for Discussing School in Your Group The transition from Early Start to school-age services often feels like a big change to parents. Parents may want to discuss their concerns about sending their child to preschool (or kindergarten) and may feel confused about what type of class they should put their child in. They may also worry about getting the right services for their child. Sometimes children may not receive Early Start services, but go directly into special education at age 3 (or older). These parents may be very new to special education and need help understanding the system.

In your group, you can ask parents: • What has been your experience with Early Start? • What are you expecting at your first (next) IEP? • Where do you go to learn about special education? • How can you help prepare your child to start preschool (kindergarten)? III Resources • Team of Advocates for Special Kids (TASK) www.taskca.org , (866) 828-8275, [email protected], • Family Empowerment and Disability Council http://www.efrconline.org/myadmin/files/fedc_facts.pdf • Reaching Latino and Chinese Families www.fiestaeducativa.org and www.cpad.org • Disability Rights California www.disabilityrightsca.org • State Council on Developmental Disabilities Los Angeles Regional Office http://scdd.ca.gov/losangeles.htm • Learning Rights Law Center www.learningrights.org • Special Needs Network http://snnla.org/ • Office of Clients’ Rights Advocacy (for regional center clients only) 1-866-833-6712 IV Red Flags and Where to Get More Help • Parents are very new to or confused about special education. o They can take classes from TASK, Area Board 10, a Family Empowerment Center, Learning Rights Law Center, Special Needs Network or Reaching Latino and Chinese Families (see Section III – Resources). • Parent complain that their child isn’t getting the services in his/her IEP or IFSP. o They can contact a public interest advocacy agency (Disability Rights California, Area Board 10, Special Needs Network, Office of Clients’ Rights Advocacy or Learning Rights Law Center (see Section III – Resources).

Special Needs – School – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS SCHOOL TIPS I Differences between Early Start and School-Age Special Education

Early Start (Part C) School-Age (Part B) Who is the Client? The family The child Where are services Usually in the home Usually at school provided? Who is eligible? Children under age 3 with a Children who fall under one of the developmental delay or eligibility categories and need special condition with an established education services to benefit from their risk of a developmental delay education When does it end? Age 3 Age 18 (or 22, if a child doesn’t graduate with a diploma at age 18) What is the plan Individualized Family Service Individualized Education Program (IEP) called? Plan (IFSP) Who provides the Regional Center (in most cases) School is the main service provider (if a services? child is also eligible for regional center then regional center provides services for home and community involvement). What is the focus? The child’s developmental needs Educational benefit (the whole child)

II Preparing for school – Parents • Look at different choices of school and types of classrooms. • Talk with regional center service coordinator about transition from Early Start. • Learn about special education. • Ask questions. • Learn about child’s disability and his/her educational needs. • Help the child prepare for school. • Make sure the teacher has a copy of the IEP. • Parents should make sure they understand what is in their child’s IEP.

III Preparing for school – Children • Take the child to visit the school before he/she starts. • Meet the teacher (if possible). • Talk about what children do at school. • Take the child to play with other children (at the park, a play group, etc.). • Read to the child. • Make sure vaccinations and dental care are up-to-date.

SPECIAL NEEDS SELF-CARE I Background Parenting can be both joyful and stressful. Every parent feels stress at some point in time. Parents often take care of everyone but themselves, caring for their children, running the household, working in the community and oftentimes taking care of extended family members. The everyday challenge of parenting is compounded when there is a child with special needs. Parenting a child with special needs brings added responsibilities and concerns, which may include: • Impaired parental sleep; • Complex daily care needs; • Managing health and therapy appointments; • Time away from siblings; • Worry about the child’s future; • Financial hardship; • Change in family routines; • Change in extended family rituals; • Child care access; • Isolation from support circles; and • Marital strain. It can be difficult for parents to be emotionally available to their children when they are overwhelmed by responsibilities. The best way to take care of children is to be sure that parents take care of themselves.

There are many benefits of self-care. Relaxation and renewal are the common benefits. Self-care not only makes us better caregivers, but also contributes to overall physical and emotional health. It helps to take a break from stress, giving our mind and body the chance to slow down and relax, which replenishes our emotional reserves. Self-care can help us gain a fresher perspective on our daily living activities and can refill our energy for daily responsibilities.

Long-term stress affects parents’ health and well-being. Chronic everyday stress can lead to serious health problems. Ninety percent of all doctor visits in the United States are due to stress-related illnesses. Chronic stress, defined as ongoing worries that continue over several months or longer, may shorten life expectancy by 15 to 20 years. Stress can affect one’s health in the following ways: • High blood pressure, which may trigger a heart disease; • Short-term memory loss; • Inability to sleep; • Increased vulnerability to bacterial and viral infections; • Delay of wound healing; and • Weight gain and accumulated fat around abdomen.

Some signs of stress are: • Feeling constantly tired; • Tension in head, neck or shoulders; • Getting sick often; • Worrying a lot; • Trouble falling asleep; • Eating too much; • Feeling irritated; • High blood pressure; • Too tired for sex; • Feeling overwhelmed. If signs of stress do not disappear in three or four weeks, professional help should be sought. Marriage family therapists, social workers, psychologists and psychiatrists can help parents address the stressors in their lives. If a parent needs more help, provide resources and talk with your supervisor.

II Tips for Discussing Self-Care in Your Group You may be able to start a discussion by asking, “How are things going?” You may not want to start your support group with this topic, but instead wait until people have started feeling more comfortable in the group. In your group, you can ask parents: • How are you able to take care of yourself in addition to your family? • Are you finding it difficult to do everything you need to do? • Where do you go for help and/or support?

III Resources • Family Resource Center Network of Los Angeles County http://familyresourcenetworklac.org/ • Self-Care Tips for Parents (See Appendices)

IV Red Flags and Where to Get More Help Parents overwhelmed by stress may be experiencing some of these symptoms, which may indicate a need for professional help if they last more than three or four weeks. • Feelings of sadness; • Lack of interest in things that had been • Frequent crying; enjoyed; • Mood swings: highs and lows; • Panic attacks, nervousness and anxiety; • Loss of interest in food or over-eating; • Loss of interest in caring for self; • Trouble sleeping or sleeping too much; • Excessive worry or not enough concern about the baby. When parents need more help, they can contact: • Department of Mental Health 24/7 ACCESS/HOTLINE: 1-800-854-7771 • Los Angeles County 2-1-1 for Mental Health Services • Los Angeles County Association of Marriage Family Therapists: www.lacamft.org

Special Needs – Self-Care – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS SLEEP

I Background Children with special health or developmental needs may have an increased chance of having sleep differences that require parent’s attention and care. Depending on the level of care required and the child’s disability, parents may also have difficulty getting enough sleep themselves. Sleep deprivation is common for parents whose children use life-sustaining medical equipment (apnea monitors or oxygen), children who have difficulties sleeping through the night (e.g., children with autism, trauma or anxiety) or have life-threatening conditions (seizure disorders or heart/lung conditions). Lastly, bedwetting occurs frequently among children with physiological or developmental disabilities for longer periods than typical children resulting in prolonged sleep disturbance into school age. There are several ways children with special needs experience sleep issues: • Difficulty going to sleep, sleeping through the night or waking frequently; • Difficulty calming or self-soothing necessary for good bedtime routines, falling asleep and staying asleep; • Pain related to their illness; • Sleep interruptions due to medication or medical procedures; • Sleep apnea or breathing issues during sleep; • Night terrors, nightmares or fears of the dark. SIDS (Sudden Infant Death Syndrome) is most common in infants 1-4 months old, but children are at risk until they are a year old. While pediatricians recommend all healthy infants be placed on their back for sleep, there are some infants who have health concerns and the pediatrician recommends a different position. Parents should speak to their child’s pediatrician if they have concerns. Contact your local Women Infants and Children (WIC) or Department of Public Health to ask for a guest speaker on the subject of SIDS. II Tips for Discussing Sleeping in Your Group Most parents whose children are experiencing sleep issues or are sleep deprived themselves may wonder if these issues will ever go away or if they will ever be able sleep again. Parents may want to share about the frustrations experienced around these issues. It will be important to be supportive and allow for sharing in the group setting. However, it is also important to know when parents need to speak to their pediatricians or other medical professionals when further support is needed.

In your group, you can ask parents: • How is your child sleeping? • How are you sleeping? • What kinds of helpful sleep routines have you developed? This may also be a time when parents want share their concerns about Sudden Infant Death Syndrome (SIDS), or to discuss their need to check on their babies often when they are sleeping. III Resources More resources on sleep • All About Sleep http://kidshealth.org/parent/general/sleep/sleep.html#cat190 • Family Education Brochures http://www.chs-ca.org/community-education-services/fep- brochures/ • Sleep: Helping Your Children Get the Rest They Need http://www.chs- ca.org/_images/files/FEP_Sleep_Eng_print.pdf Sleep challenges • Another Restless Night, or Something More? https://www.kennedykrieger.org/overview/news/five-signs-sleep-disorders-school-age-children- with-special-needs • ATN/AIR-P Sleep Tool Kits http://www.autismspeaks.org/science/resources-programs/autism- treatment-network/tools-you-can-use/sleep-tool-kit • Night-Night… or Not: Talking About Babies, Toddlers and Sleep http://www.zerotothree.org/about-us/funded-projects/parenting-resources/podcast/night- nightor-not-talking.html • SIDS • Safe to Sleep Education Campaign http://www.nichd.nih.gov/sts/Pages/default.aspx • Center for Disease Control – Safe to Sleep Materials (in English and Spanish) http://www.nichd.nih.gov/sts/materials/Pages/default.aspx#parents

IV Red Flags and Where to Get More Help • If you have concerns about SIDS, discuss them with your pediatrician. • Preemies, especially those with respiratory issues, may not sleep through the night for many months. • Contact your local regional center http://www.dds.ca.gov/RC/RCzipLookup.cfm if your child has other sleep problems and social/emotional difficulties that cause you concern. • Contact your pediatrician if your child snores, coughs and wakes during the night.

Special Needs – Sleep – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS TIPS TO IMPROVE SLEEP PATTERNS

1. Make sleep a priority. Teach children and reinforce behaviors that value sleep and rest. Without a good night’s sleep, children may have difficulty participating fully in activities, such as developmental activities and therapies.

2. Develop a bedtime routine. Everyone needs this, even adults. A short set of calming activities helps children “wind down” to be ready for sleep.

3. Keep schedules consistent between weekdays and weekends. Kids who stay up later and sleep in on weekends may find it hard to return to their regular schedules during the school week. Children under the age of 5 don’t really understand the need to “sleep in” on weekends, so think of routines for them that allow you to sleep and them to play quietly or rest in your room.

4. In fact, keep schedules consistent every day. Going to bed and waking up around the same time daily trains your brain to account for the hours you need for other regular activities.

5. Make the bedroom a restful place. TV and video games are not only distracting in the bedroom, but they also produce bright light that signals the brain to wake up.

6. Sleep in the same place every night. Children who sleep on the couch, on the floor or in different beds have more trouble developing good sleep habits.

7. Avoid caffeine. Caffeine in sodas, teas and coffees can keep children and adults awake.

8. Put your children to bed when they are sleepy, but not yet fully asleep. Self-soothing is a fundamental skill for children. Putting children in bed before they are completely asleep gives them an opportunity to develop this skill.

9. Address anxiety. Anxiety commonly affects children with disabilities, and makes sleep difficulties worse.

10. Take note of sleep problem signs. Tracking patterns and signs can help your pediatrician or a sleep expert to more quickly identify the problem and offer solutions.

This tip sheet is based on an article published by the Kennedy-Krieger Institute, “Another Restless Night or Something More: Five Signs of Sleep Disorders in School-Age Children with Special Needs,” March 7, 2013

SPECIAL NEEDS UNDERSTANDING DEVELOPMENT

I Background Children develop at different rates. Parents quickly discover this when they try to use their older child’s development as the measuring stick for the next child. Developmental milestones are a set of skills that most children can do at a certain age or age range. The way children learn is dependent on their own personality and temperament, health and experiences. Although professionals use checklists and charts to measure whether a child is doing well, it is also quite common for children to follow their own developmental path.

This does not mean that parents should not be worried or seek help when they have concerns about their child’s development. Parents should follow their instincts and seek advice from pediatricians and others when they have concerns. Parents should also be persistent if they continue to have concerns after consultation with professionals.

Children who have special needs can have health-related issues and/or developmental delays. Sometimes the delays are due to illness or hospitalizations. Other times, the developmental delay is part of a condition, such as, Down syndrome, cerebral palsy or autism. Parents need to work closely with professionals to identify the issues to be addressed to help their children maximize their development before preschool. This means educating themselves on development, disabilities and observing their child – even keeping notes about the behaviors or lack of behaviors that concern them. Parents should also consider whether they are providing the environment and opportunities for the child to improve and meet their developmental milestones.

II Tips for Discussing Development in Your Group Discussions in parent support groups will depend on the group. Therefore, your discussion will depend upon the needs and the composition of the parent participants. A group of parents with children who all have the same condition will present issues that are more consistent around that disability than a mixed group. You may find that after some discussion the group may want a speaker to come talk with them about childhood development. You should approach your community organization for help to find an appropriate speaker. You may also want to share some of the resources from these documents with the group. If possible, use a computer to show some of the sites available to help parents monitor and understand their child’s development. As a group you may listen to a podcast from the Zero to Three Parenting Podcast series or watch a video from a resource library or on You Tube. In your group, you can ask parents: • Do you have concerns about your child’s development? • What resources are available to answer your questions? • What goals do you have for your child’s development, and what strategies are you using?

III Resources • Understanding development o http://www.med.umich.edu/yourchild/topics/devmile.htm o http://www.pbs.org/parents/inclusivecommunities/ o http://www.pbs.org/wholechild/abc/ o http://www.zerotothree.org/child-development/brain-development/baby-brain-map.html o http://www.zerotothree.org/child-development/early-development/magic-of-everyday- moments.html o http://www.zerotothree.org/about-us/funded-projects/parenting-resources/podcast/ o http://www.healthychildren.org/English/Pages/default.aspx o http://www.cdc.gov/ncbddd/actearly/index.html o http://pathways.org/ • Disability-related resources o http://www.autismspeaks.org/what-autism/learn-signs/interactive-learn-signs-quiz o http://www.ndss.org/ o http://ucp.org/ o http://www.thearc.org/page.aspx?pid=2522 o http://www.scdd.ca.gov/ o http://www.disabilityrightsca.org/ o http://familyvoicesofca.org/ o http://www.uscucedd.org/index.php?option=com_content&view=article&id=140&Itemid=160

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; o Reasons for concern brochure: http://www.cde.ca.gov/sp/se/fp/concerns.asp. • Emotional support and help navigating the systems o Family Resource Centers: http://www.familyresourcenetworklac.org/ o Parent training and information: http://www.taskca.org/ http://www.fiestaeducativa.org http://www.cpad.org

Special Needs – Understanding Development – 2015 Funded by First 5 Los Angeles

SPECIAL NEEDS RESOURCES I Background Parents of children with special needs may need services from a variety of systems. This can be confusing for some parents. While California provides services and support for children with special needs, it isn’t always easy to know what is available and how to access it. In addition, parents may find it difficult to get good information from generic sources when their children’s growth and development may be very different from that of other children. In general, the services and supports for children with special needs include: • Advocacy services – Families of children with disabilities sometimes need more than just information to help them access needed services. There are public interest legal and advocacy organizations that can either help them directly or provide resources for legal help. • Disability, language or culturally specific information – Families of children with disabilities often want help understanding their child’s disability and also want to connect with parents who have similar experiences and concerns. Disability, language and/or culturally specific organizations can help provide information and support to families in a comfortable manner. • Early Start – Services provided for infants to age 3, who have a developmental delay in either cognitive, communication, social-emotional, adaptive, or physical and motor development, including vision and hearing. These services are usually provided by the regional center. • Family support services – Families of children with disabilities often need support. They may need help in understanding and accessing the service systems. They may also need help finding good resources in their community. Family support services are often provided by trained parents who have children with disabilities. • Medical care – Los Angeles County California Children’s Services (CCS) provides medical care for children who have an eligible medical condition. These conditions are usually catastrophic, chronic and/or disabling. • Mental health – Los Angeles County Department of Mental Health (DMH) provides mental health care for children who have a mental health diagnosis and/or behavioral issues. • Regional center – In addition to Early Start, regional centers provide services for children over age 3 and adults with the following developmental disabilities: autism, cerebral palsy, epilepsy and intellectual disabilities. They also provide services for people who have disabilities that are similar to or require similar services to those needed by someone with an intellectual disability. In addition to having an eligible diagnosis, the disability must present a substantial handicap. • Special education – services for children 3-18 (in some cases 22) who meet a special education eligibility category and require special education services to benefit from their educational program.

California Children’s Services (CCS) and California Department of Mental Health (DMH) have a financial eligibility requirement, so eligibility is determined by both the diagnosis and the family income. Some of the systems have a residency requirement, but this means that the child has to live in Los Angeles County, not that they or their parents have to be documented. No support group facilitator is expected to know every resource; however, it is important for facilitators and families to learn about how to find resources. It is a good idea to start developing a network of resources to draw upon. This can include your supervisor. Also use your fellow support group facilitators as a source of information and services. Resources can change frequently, so resource guides can quickly go out of date. It is better to give “good resources.” This means knowing that the phone number is working, the agency is still open and maybe some information about what a parent can expect. II Tips for Discussing Resources at Your Meetings Families of children with special needs are frequently both worried about their child and frustrated from trying to understand and use the service systems. Support groups are an excellent place to vent these concerns and are a good forum for providing and sharing resources. However, it is important that resources are provided in a helpful and responsible manner. You may choose to have discussions and/or sessions focused on resource sharing. You may also want to have a resource table at your meetings with brochures, fliers and information about programs and events that might be of interest to your families. Things to think about when providing resources: • While you (or other parents) can suggest resources, you can’t guarantee what services they will receive or even if they can get services. Don’t make promises. • Information can change quickly, especially on websites. When websites are updated or revised, specific page addresses may change. If you have a link to a specific page and it doesn’t work, go back to the homepage and look in the organization’s directory, or use the search function to see if the link has been changed. • Try to use reliable sources of information. In general, we prefer information from nonprofit, university or government sources. It is less likely that the information is biased or that someone is trying to sell something. • When parents want to share resources, ask them to share resources they recommend, rather than ones they don’t. Also ask them to think about why they like this resource. This helps parents identify whether this would be a good resource for them. For example, some parents like a doctor because they don’t have to wait a long time in the waiting room. Other parents don’t mind waiting if they can spend more time with the doctor. III Resources Advocacy services • State Council on Developmental Disabilities Los Angeles Regional Office http://scdd.ca.gov/losangeles.htm, 818-543-4631 • Disability Rights California www.disabilityrightsca.org Disability, language and/or culturally specific organizations • State Council on Developmental Disabilities Los Angeles Regional Office http://scdd.ca.gov/losangeles.htm, 818-543-4631

Special Needs – Resources – 2015 Funded by First 5 Los Angeles

• 211 Los Angeles County www.211la.org • Family Resource Center Network of Los Angeles County (FRCNLAC) http://familyresourcenetworklac.org Early Start • Family Resource Center Network of Los Angeles County (FRCNLAC) http://familyresourcenetworklac.org • California Department of Developmental Disabilities (Early Start Program) http://www.dds.ca.gov/earlystart/, (800) 515-BABY or e-mail [email protected] Family support • Family Resource Center Network of Los Angeles County (FRCNLAC) http://familyresourcenetworklac.org • California Network of Family Strengthening Networks http://www.cnfsn.org/, (415) 934-4837, Medical care • LA County CCS http://www.publichealth.lacounty.gov/cms/CCS.htm, 1 (800) 288-4584 • Family Voices of California www.familyvoicesofca.org 415-282-7494 [email protected] • 211 Los Angeles County www.211la.org Mental health • LA County Department of Mental Health http://dmh.lacounty.gov/wps/portal/dmh, 1-800-854- 7771 • Project ABC (Early Childhood Mental Health) www.projectabc-la.org , 855-436-1136 • United Advocates for Children and Families (USCF) www.uacf4hope.org (916) 643-1530 • 211 Los Angeles County www.211la.org Regional center • California Department of Developmental Disabilities http://www.dds.ca.gov/RC/RCList.cfm Special education • Team of Advocate for Special Kids (TASK) www.taskca.org , (866) 828-8275, [email protected], • Family Empowerment and Disability Council http://www.efrconline.org/myadmin/files/fedc_facts.pdf • Reaching Latino and Chinese Families www.fiestaeducativa.org and www.cpad.org • Disability Rights California www.disabilityrightsca.org IV Red Flags and Where to Get More Help • A parent has very urgent needs o The parent may be very stressed and need help. It may also take some “professional to professional” intervention to access an appropriate resource. Talk to your supervisor. • A parent is having difficulty accessing services or supports o Parents might need help identifying who to call or gathering resources needed to access services. • A parent is having difficulty following up on resources o The parent may not read well, or understand how to follow up. The parent may be reluctant to ask for help or may be embarrassed about needing help. The parent may also be too stressed or depressed to follow through on his/her own.

Special Needs – Resources – 2015 Funded by First 5 Los Angeles