CARING FOR CHILDREN WITH SPECIAL NEEDS   Tips on caring for a child with AUTISM BRAIN INJURY CEREBRAL PALSY EPILEPSY MENTAL RETARDATION

Babysitting for any child is a big responsibility. You are in charge of a child's physical and emotional well-being and safety while the parents are away. If the child has a developmental disability, such as autism, brain injury, cerebral palsy, epilepsy or mental retardation, the child is likely to have other needs that also must be met. This booklet has been prepared to help you feel comfortable when caring for a child with one of these conditions. The most important thing is to treat the child with dignity and, as much as possible, like anyone else in your care. All children have the same basic needs and wants. But if you know a few things about the effects of each disability, your job will be easier. For example, if you know how to react to a seizure or how to position an infant with cerebral palsy for feeding, you'll feel much more confident in dealing with the child. Parents will be able to answer most of your questions about their child. But you'll need basic information on the child's condition, and you'll want to ask specific questions about his/her care. General information on autism, brain injury, cerebral palsy, epilepsy and mental retardation is given on the following pages. For each section, there's a list of things to discuss with parents who have a child with special needs.   AUTISM Autism is a neurological condition characterized by problems in communication and behavior. Children with autism are unable to relate to other people in a normal manner. Nowadays, medical researchers think that autism is caused by a brain disorder, possibly genetic or viral, which makes it harder for people to communicate, socialize and learn. People with autism may feel overwhelmed by happenings in the world around them and often find security in familiar things, such as toys or other objects. Rigid routines and set ways of doing things help persons with autism cope with the world. The very fact that you are there with the child has changed his or her schedule and the child may get upset or totally ignore your attempts to be friendly. Be patient and realize that it may take a while for the child to get used to you. If you are asking a child to do something, be sure to give directions one step at a time. Instead of telling a child to go to the closet and get a coat, for example, tell the child to go to the closet (you go too) and then tell or show the child how to get the coat. Characteristics Many people do not understand why people with autism act as they do. People often mistakenly assume that they are deaf, cognitively delayed or socially immature. Some children with autism may have mental retardation or other disabilities but this is not always true. There are not medical tests to detect autism. Doctors diagnose autism by the presence or absence of these characteristics: difficulty in relating to others or their environment problems with communication hyperactivity or extreme lack of activity difficulty in adjusting to changes in routines repetitive movements such as rocking or arm waving inconsistency-characteristic behaviors may or may not be exhibited unevenness of development allowing for extremes of talents and non-talents Care-Giver Checklist Parents can help you provide better care for their child by telling you about the child's communication and behavior patterns, likes and dislikes, and how the child relates to people. The following list will help you ask some important questions. Communication Does the child have any unusual communication patterns? Any special words or signals? Does the child use a communication board? Does the child use facilitated communication? Behavior How does the child react to others? Are there likely to be behavior problems? If so, how should they be handled? Does the child have any unusual fears? General Are there any special routines (for meals, play or bedtime)? Is there a specific bathroom routine? What preferences does the child have for toys? Foods? Activities? What can you do to make the child be a part of the group?   BRAIN INJURY Brain injuries can be caused by any type of force, jar, blow, bruise or cut to the head area. Common causes of injuries to the head area are auto accidents, falls and bicycle accidents. A brain injury can also mean an injury to the brain through infection, tumors or lack of oxygen to the brain. Some causes may be meningitis, stroke and near drowning. Characteristics The outcome of a head injury can vary greatly. Often people who have experienced a head injury appear "normal". Their disability becomes apparent only after you spend time with them. Injuries may either be temporary or permanent and may cause mild or severe disabilities. Children who have experienced a head injury have their own unique needs. A child who has a mild head injury may have some of the following characteristics: Memory loss, low frustration level, vomiting, temper tantrums, "acting out" behavior, irritability, poor concentration, quick mood changes, impulsiveness, distractibility, and/or seafaring (epilepsy). A child who has a more severe head injury may have these same characteristics at a more severe or intense level and/or may have additional characteristics as well. For example, a child may be limited in speech, motor coordination and self-care. Care-Giver Checklist Children with head injuries have the same needs, interests and desires as other children. But here are some areas where understanding a child's individual needs, depending on the severity of the injury, can help you provide better care. Review these questions with the parents: Communication How much does the child understand and remember? Does the child have difficulty interacting with others? Can the child tell you what their needs are? Behavior What type of behavior might you see? How do you handle it? Special Equipment Does the child need any special equipment? How does it work? Does the child need help to use the equipment? General Are there any "routines" the child enjoys, such as at bedtime or at meals? How closely do you need to watch the child beyond the usual supervision? Does the child need help with self-care activities?   CEREBRAL PALSY Cerebral palsy is the result of damage to the part of the brain that controls and coordinates muscular action. The damage can be mild to severe. A small number of children might also experience seizures, cognitive delays or problems with sight or hearing. Over 80 percent of children with cerebral palsy will have impaired speech that can range from mild to severe. For instance, some might be unable to talk. Many may use other means to communicate, such as a communication board, a computer, sign language, or facilitated communication. Though a person has cerebral palsy, it doesn't't mean they have mental retardation. What causes cerebral palsy? Doctors do not always know. Any damage to the brain may cause cerebral palsy such as infections during pregnancy, complications during delivery, premature birth, and head injury or illness in the child. Can it be cured? There is no cure for cerebral palsy but each person can be helped to achieve maximum growth and development, sometimes through special education and physical, speech or occupational therapy. Medications, surgery and braces are sometimes used to improve nerve and muscle coordination or to prevent or correct functioning. Treatment varies with the child's age and with the type and severity of the disorder. Progress is being made in the area of prevention. Vaccines against German measles, early identification of high-risk fetuses and better pre- and post-natal care are helping to reduce the incidence of cerebral palsy. Recommenced measures for women who are or want to become pregnant include the following: a nutritious diet that includes folic acid, correcting diabetes or anemia, eliminating any infections, and avoiding tobacco, alcohol, and addictive drugs. Care-Giver Checklist Be relaxed. Remember that children with cerebral palsy are children first although they may have some special needs. The following areas might be checked with the parents-depending on the severity of the child's disability. Special Handling How do I pick up the child? Are there any special instructions for carrying the child? Feeding Does the child need to be fed? How much can the child do independently? Are there special utensils that must be used? Any special instructions on the bite size or the consistency of the child's food? How should the child be positioned when eating? Is the child likely to choke? What should I do? Bathroom How it toileting handled? Is the child on a schedule? Will the child let me know when the toilet needs to be used? Is help needed? Play What play positions are most comfortable for the child? Are pillows or bolsters needed? Are there any special toys? General What special equipment is used? How does it operate? Does the child have understandable speech? If not, what special signs are used? Does the child use a communication board? Does the child use facilitated communication? Are there other medical problems I should know about? Does the child need to be repositioned? How often?   EPILEPSY Epilepsy is the general term used for different types of seizure disorders. A seizure means that there is an electrical disturbance in the brain that lasts a few seconds to several minutes. The rest of the time, the brain works just fine. The outward sign of a seizure might be a convulsion, a brief stare, an unusual movement of the body or a change in awareness. Some people can experience a seizure and not have epilepsy. Some seizures are caused by fevers, chemical imbalances, or withdrawal from alcohol or drugs. A single seizure does not mean a person has epilepsy. Usually, epilepsy is treated with medication. With appropriate treatment, most of those with the disorder can expect partial or complete control of seizures. Some children may have additional conditions such as learning disabilities. What causes epilepsy? In over half of all epilepsy incidents, no cause can be found. Among the rest, head injuries, brain tumors, genetic conditions, lead poisoning, problems in brain development before birth, illnesses like meningitis or encephalitis or even severe cases of measles may result in seizure disorders. The child with epilepsy usually should not be treated differently from other children. If a seizure occurs while you're caring for a child, don't panic. Although seizures may look painful, they are not! You may see brief changes in how a child moves or acts during a seizure. For example: A seizure could make a child stop what he's doing and stare for a few seconds. It could make a child fall suddenly to the ground perhaps with incontinence or followed by excessive fatigue. It could make an arm or leg shake for a minute or two. I could make a child feel afraid or angry or make things look different from what they really are. It could make a child seem confused and dazed, as if half asleep. It could make a child have a convulsion that results in falling, stiffness and shaking for a minute or two (Pale or bluish complexion may result from difficulty breathing.) Care-Giver Checklist Parents can help you feel more comfortable caring for their child if they explain the seizure problem to you. They should answer any of the following questions that apply: Behavior What kind of seizures does the child have? Is there any warning first? How long do they typically last? Describe the behavior of the child during a seizure. How often do seizures occur? How does the child act after a seizure? How long before the child is back to normal? How will other family members react to a seizure? Special Handling How should the child be reassured/comforted following the seizure? What should you do if the child has a seizure? Who should be called (if anyone)?   SEIZURES Caring for Various Kinds of Seizures: Keep calm. There is nothing you can do to stop a seizure once it has begun! Don't try to restrain the child. It will be helpful to the parents and doctor if you write down a complete description of what happened before, during and after a seizure. Record the time it started and ended, what the child was doing, what occurred when and in what order, and the child's seizure recovery period. If the child has a generalized tonic clonic seizure (formerly know as grand mal seizures or convulsions): Ease the child into a lying position. Put something soft and flat under the head. DON'T PUT ANYTHING IN THE MOUTH! Don't try to hold the tongue. It can't be swallowed. Remove nearby hazardous objects that could injure the child. Loosen tight clothing; remove glasses. Turn the child on their side to keep air passage clear. Don't give food or drink during or just after a seizure. In some cases, the child will be confused after the seizure and will not remember what happened. Encourage the child to resume activities. Speak calmly; reassure the child when consciousness returns. Let the child rest afterward, if necessary, then encourage resuming activities. If the child has absence seizures (formerly know as petit mal), no first aid is needed, but they should be recorded. Write down the time and what the child did (i.e., blank stare, blinking, eyes rolling). If the child has simple partial seizures, no immediate action is needed other than reassurance and emotional support unless the seizure becomes convulsive, then follow first aid as noted above. Record time and movements such as jerking of body parts, and what the child said and did. If the child has complex partial seizures (formerly known as psychomotor or temporal lobe), the child may mumble and seem dazed. Inappropriate behaviors, actions and unresponsiveness may occur, as well as aimless wandering. Speak calmly and reassuringly; guide gently away from hazards/danger; and stay with the child until completely conscious and aware of surroundings. If the child is diabetic or injured during a seizure, if the seizure does not stop, if there are multiple seizures, if the seizure lasts longer than usual (or over 5-10 minutes), or if the seizure occurs in water, call for aid at once. Discuss the procedure with the parents beforehand.   MENTAL RETARDATION A child who has mental retardation will learn and develop more slowly than other children. As with all children, each child with a cognitive delay is unique, with his or her own personality and abilities. He or she may have unusual difficulty in learning, and in social adjustment. A child with mental retardation may have poor judgement and may be unable to reason appropriately. He or she may have difficulty deciding how to act in new situations, and sometimes be unable to learn by applying past experiences. Some children have mild cognitive delays while others are more seriously affected. Mental retardation has many different causes, but it is not a disease, nor should it be confused with mental illness. Scientists have identified more than 350 causes, but the majority of causes are still unknown. Sometimes an injury occurs at birth. Sometimes a child receives a sever head injury. Sometimes something happens to the genes or the material in the cell that directs the growth of the child. Sometimes the mother becomes ill during pregnancy or uses a drug witch affects the growth of the fetus. Often no simple cause can be found. All children with mental retardation can learn, can play and have a happy life. With help they can develop to their full potential. They do not remain children forever. Some children might need special education, and, in later life, job support to assist them at work. It's important to remember that people who have mental retardation have the same hopes, dreams, emotions, and needs as people who do not have a cognitive delay. Caring for children with mental retardation Talk at the child's level of understanding. Don't use baby talk or talk in a loud voice. Be sure the child is familiar with you before parents leave. Be positive and patient. Let the child do as much as possible. Care-Giver Checklist Knowledge of a child's habits and medical needs can help you give the best care and attention. Ask the parents to answer any of the following questions that apply: Communication Does the child have difficulty communicating? If so, what approaches work best? Should you always use a certain gesture with a certain word? Does the child use a communication board? Sign language? Eyes? Communication book? Are there words that you might not understand such as "ba" for bathroom, "wa" for water? What is the child's general level of understanding? What should I do if the child throws a temper tantrum? General Is there a special bedtime routine? Should the child be checked on once asleep? Do I need to remind the child to use the toilet? Can the child toilet alone or is assistance needed? What special equipment does the child use, like a sleep monitor or communication board, and how does it work? Feeding Can the child eat without assistance? Are special utensils needed? Is choking a problem? Are there any dietary restrictions?   GENERAL TIPS It's good to get to know the children you're caring for before the parents leave you alone with them. If the parents agree, plan to arrive an hour early to give the children time to get used to you. Some parents may want you to come the day before you sit, maybe at mealtime or some other time when you can see the family's routine. It will be less traumatic for them and you if the children have had a chance to get to know you before the parents leave. Ask the parents to write down guidelines or any special instructions. With a new family, it's especially good to have the information to help you remember what the parents said about: names and nicknames of children places that are off-limits to the children TV rules for children favorite activities or toys special habits or problems (such as fear of the dark) Also record these numbers: where parents can be reached family doctor close family friend or neighbor police department fire department medical emergency poison center Safety The physical safety of the children should be your primary concern. Keep a friendly eye on them at all times. Don't wait for things to happen. Be alert and take steps to prevent accidents. Check on the danger zones around the house. Be sure the children are away from a hot stove, electrical plugs and cords, appliances, knives and cleaning materials. Keep young fingers away from electrical outlets. Outside, keep children away from sharp or pointed garden tools, lawn mowers and other equipment. Realize that even play equipment can be dangerous. Teeter-totters can come down on a child's head, for example, or a swing can hit a child standing too close. Be alert to cars and moving bikes. The following are some general tips to remember: Try to prevent accidents before they happen. Keep a list of emergency numbers by the telephone and know how to use them. Know where to find first aid supplies in the home or bring your own first aid kit. Know how to use first aid supplies or kits. Medication Many children with disabilities take medication to assist them with their daily living activities. Many of these medications are very strong and could be harmful to the child if they are not taken according to the prescription. You will want to know if the child is taking medication at this time and if the medication changes from time to time. Ask the parents to provide you with the child's medication information. You should know the name of the medication, when it should be given, how much should be given, where the medication is kept, and what you should do if the child takes too much or not enough medication. You many want to know what the medication is for, if there is a special routine to be followed when the medication is given, and if the child takes it without help or needs to be reminded to take it. You may also ask the parents if the child is rewarded for taking the medication. First Aid Here are some suggestions for common problems. These suggestions, however, should not take the place of a first aid course that may be offered in your community. Whenever the situation looks like it might be serious, get in touch with the parents or a doctor at once. During the stress of an emergency you might be excited or confused about what do to. Stay calm, you can help. Remember these simple emergency action steps: CHECK - the scene for safety to you and the child. CALL - 911 or your local emergency number. CARE - for the child. Nosebleed Sit the child down in a seated position, leaning slightly forward. Keep the child as quiet as possible. Pinch the nostrils together. Apply a cold compress (a wet, cold towel or washcloth) to the bridge of the nose and face. Put pressure on the upper lip just below the nose. If bleeding continues and/or there is another nasal injury, call the parents or the family doctor. Once bleeding stops, allow the child at least 10 minutes or rest before resuming play. Brain Injury If you witness a blow to the head, look for any of the following symptoms: irritability, confusion, drowsiness, vomiting, slurred speech, lack of coordination, a change in behavior, blurred vision, any unusual drainage from the ears or nose, unconsciousness, seizures, poor concentration, temper tantrums or destructive behavior. Any of these symptoms may appear immediately or sometime following an injury to the head area. If any of these symptoms appear, immediately call 911 or your local emergency number. DO NOT allow the child to fall asleep, but keep the child quiet. Do not give food or drink. Bruises or Cuts with Bleeding Cover the wound with a clean dressing. Press firmly against the would with your hand (direct pressure). Always try to use latex gloves (if the child is not allergic to latex), a gauze pad, or towel between your skin and the child's blood. Elevate the wound (leg or arm) above the heart level, if it can be done without further injury. Apply a bandage to hold the dressing in place. If bleeding does not stop, apply additional bandages. If the wound is large or the bleeding will not stop, call 911 or your local emergency number. Burns If it's a light burn, simply run cold water over it. If it's deep or covers a large part of the body, keep the child quiet and get help at once. Don't pull off the scorched clothing. Choking If an infant (under 12 months) is unable to cry, cough, or breathe, call 911 or your local emergency number immediately. Then position the child facedown on your forearm so that the head is lower than the chest. Give 5 back blows between the shoulder blades. Turn the child onto his/her back. Give 5 chest thrusts in the center of the breastbone. Stop as soon as the object is coughed up or the infant starts to breathe or cough. For an older child who is coughing forcefully, let him/her try to cough up the object. If the child continues to cough, without coughing up the object, call for an ambulance. If the child cannot cough forcefully, speak, or breathe immediately, call 911 or your local emergency number; then give quick upward thrusts to the abdomen, just above the navel. Stop as soon as the object is coughed up or the child starts to breathe or cough. Animal Bite Wash the wound thoroughly with soap and water. Stop the bleeding. Bandage the bite. Remember the description of the animal and where it can be located. Call the police and parents immediately. Poisons Remove the person from the source of the poison. Care for any breathing or bleeding emergencies. Take the child and the poison to a phone and call the Poison Control Center. If you do not know the number, call 911 or your local emergency number. Tell them what happened and then follow their instructions. If the child takes prescribed medications be sure to indicate that information. Something in the Eye Tell the child to blink quickly so a tear will wash it out. If this does not work, flush the eye with lukewarm water. Don't let the child rub the eye. If the particle does not come out, call 911 or your local emergency number. Do not try to remove it yourself. When the parents return, discuss any problems you had. Tell them how you handled any situation that you weren't sure of and ask how they would have handled it. Parents will appreciate you concern.   Feel free to print and cut out the box below for your use:   IMPORTANT PHONE NUMBERS: Where parents can be reached: ___________________________________________________ ___________________________________________________   Family doctor: ___________________________________________________ ___________________________________________________   Family friend or neighbor: ___________________________________________________ ___________________________________________________   Police: ___________________________________________________ ___________________________________________________   Fire: ___________________________________________________ ___________________________________________________   Medical Emergency: ___________________________________________________ ___________________________________________________   Poison Control: ___________________________________________________ ___________________________________________________     This publication was developed under the Developmental Disabilities Assistance and Bill of Rights Act, as amended by P.L. 103-230 from the Wisconsin Council on Developmental Disabilities. For additional copies or for further information contact: Wisconsin Council on Developmental Disabilities 600 Williamson Street P.O. Box 7851 Madison, WI 53707-7851 (608) 266-7826 TTY/TDD: (608) 266-6660 FAX: (608) 267-3906 January 1996