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What is an Acquired or Traumatic Brain Injury?


Acquired Brain Injury is any type of sudden injury that causes temporary or permanent damage to the brain. When the injury to the brain is traumatic, it is known as a Traumatic Brain Injury. A traumatic injury means it was caused by a hard blow to the head like when you hit your head in a fall or in a car accident.

Gargiulo, 2001 & Fletcher-Janzen, & Reynolds, 2004

To understand what happens when the brain is injured, realize what a healthy brain is made of and what it does. The brain is enclosed inside the skull. The skull acts as a protective covering for the soft brain. The brain is made of neurons (nerve cells). The neurons form paths or trails throughout the brain, carrying messages to different parts of the brain. The brain uses these messages to perform functions, including breathing, heart rate, body temperature and food absorption as well as how we think, body movements, personality and behavior. Our five senses (vision, hearing, taste, smell, and touch) also are controlled by the brain. Each part of the brain serves a specific function; each part of the brain connects with other parts of the brain for more complex functions.

Brain Injury Association of America 2005

When a brain injury occurs, the functions of the neurons (nerve cells), nerve paths or parts of the brain can be affected. The affected neurons and nerve paths might be unable or have difficulty carrying the messages telling the brain what to do. This can change the way a person thinks, acts, feels and moves the body. Brain injury also can change the way the body works, affecting body temperature, blood pressure and going to the bathroom. These changes can be for a short time or for life. These injuries may cause a change or a complete inability to perform a function.

Brain Injury Association of America 2005


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What are some common signs of acquired or traumatic brain injury?


The effects of a brain injury differ greatly depending on the cause, ranging from no problems to severe disability. In mild head injuries, the small effects might be:
  • Getting tired more easily.
  • Problems paying attention and focusing.
  • Memory or being able to remember things.
  • Perceptual motor slowing that can last from weeks to months to years.
In moderate to severe cases of brain injury, a child may be in the hospital for some time and probably will need special therapy and treatments to recover lost skills.

Many children with a severe brain injury may enter the hospital in a coma (unconscious and cannot be awakened). These children may regain some or most abilities slowly over time. Still other children may have permanent disabilities.

Gargiulo, 2001, Heller et al., 1996 as cited in Gargiulo, 2001 & Educating Educators about ABI


Some of the more common symptoms children experience with either acquired or traumatic brain injury:
  • Losing consciousness after the brain injury.
  • Loss of memory after the trauma (brain injury) when they wake up after losing consciousness (called post-traumatic amnesia).
  • Personality change (meaning they will not act and react as they did before the injury).
  • Cognitive deficits (a change in the ability to think or reason). Changes can vary widely because no two head injuries are alike.
  • The black center of the eye is large and does not get smaller in light (called dilated pupils).
  • Tires easily and often.
  • Language deficits (problems talking as before; may have "lost" language or words they can't remember).
  • Behavior problems. Acting out or angry.
  • Can't "keep up" and doing poorly in school.
  • May not grow and develop normally. Skills delayed or not develop at all.
  • Recovery times are long, up to five years.
  • Different from other children their age. This becomes more obvious as time goes on, and they don't "catch up."



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What can I do to help my child?


You have made an important first step by reading more information on traumatic brain injury. Another step is to talk with other parents of children with a traumatic brain injury. They have gone through what you are going through now and may be able to help. You also can get great help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children, the better the results for the child and family.


Below are some checklists to help your child. Remember, you are not alone.

"GETTING STARTED"
THINGS I CAN DO TO HELP MY CHILD WITH
ACQUIRED BRAIN INJURY OR TRAUMATIC BRAIN INJURY


IN THE STATE OF FLORIDA:
 Contact Children's Medical Services (CMS) for medical care for my child:


 Work with my child's service providers: A service provider is anyone who works with you and your child, such as your pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. You know more about your child than anyone else and are the main influence in your child's life. Service providers are there to help you and your child. Here are some tips for speaking with service providers:
  • Feel free to ask questions and make comments. No one knows your child better than you. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.


  • If you think your child needs something in particular (like a speech evaluation or assistive technology), keep asking until you get it or until you learn why it is not needed.


  • If your child's traumatic brain injury is severe, you may need to use your school system's hospital or homebound service to provide an education for your child.
Your child may need a Section 504 educational plan to make sure your child's educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with chronic illness to have special services or supports in their schools. For more information on Section 504, see the following website: http://www.hhs.gov/ocr/504.html

 Get more information: Visit more websites. Read a book. Watch a video on traumatic brain injury. Include your child and family. Talk with another parent. Parent to Parent of Miami  can help you meet other parents and get services.





 Have my child wear a Medic Alert bracelet: In case of an emergency, very important information on your child's condition will be available.

 Encourage my child to talk about feelings: Listen when your child is talking. Let him know his feelings are important and you are interested. Your child needs to talk about those feelings to get better. Make sure there are other caring adults in your child's life. Therapists, counselors at school or psychologists often can get children to talk about things that they may not share with you. Children worry they will cause their parents to worry or be upset. Other trusted, caring adults can be the listeners in those cases.

 Talk with my child's teacher often: Keep your child's teacher informed about your child's condition. When your child is in school, the teacher needs to know and understand about your child's brain injury and how that brain injury may affect your child's school work. Keep your child's teacher informed about your child's health issues and how to help your child recover. Talk often and openly.

 Ask my child's school about therapy services and accommodations: Counselors or therapists may be available through your child's school. Ask what services are available.

 Learn to be my child's education advocate: Parent to Parent also offers free training to learn to be an education advocate and will come to meetings with you at the school. You already have learned to be your child's advocate in the medical setting. You may need to do many of these things in the school setting. Work with teachers to develop reasonable expectations about your child's school performance and to design an education plan to meet your child's needs. Special laws and policies will help you get what your child needs. Learn them.

Learn about an Individualized Family Support Plan (IFSP). The IFSP team should include you along with the other professionals who need to be part of your child's early intervention program at home.

Develop an Individualized Education Plan (IEP). The IEP team should consist of you and your child along with educators and therapists who need to be part of your child's life at school.

Include assistive technology as part of the IEP where appropriate. Click here for a list of some helpful assistive technology accommodations.

 Make up fun ways for my child to remember important information: Use rhymes, songs and word drills to help your child remember important information. Mnemonic strategies are also fun and help trigger memory. Mnemonics are formulas for remembering facts. An example is HOMES -- Huron, Ontario, Michigan, Erie and Superior -- to remember the five Great Lakes.

 Establish and maintain daily routines for my child: Your child will be helped by consistent, predictable, regular routines. Make out a written daily schedule. Write a checklist of steps for completing complex tasks. These routines help with memory. The more your child can predict and expect, the less he or she will be frustrated.

 Encourage my child often and openly: Some things may be very hard for a child to do. Encouragement is key to keeping confidence up. Provide verbal encouragement cues after the completion of each step such as "Good" and "What would you do now?" Create a chance for your child to succeed. Alternate difficult tasks with easier and/or favorite ones.

 Ask questions about my child's injury: Work with the medical team to understand your child's injury and treatment plan. Don't be shy about asking questions. Tell the team what you know or think. Make suggestions.

 Keep track of my child's treatment history: A three-ring binder or a box can help you store this history. As your child gets better, you meet with many doctors, nurses and others. Write down what they say. Put any paperwork they give you in the notebook or throw it in the box. If you need to share any of this paperwork with someone else, make a copy. Don't give away your original.

 Take breaks regularly: Your child's recovery may take a long time. You are more help to your child when you are rested and thinking clearly. Take a break often from caregiving to refresh yourself. You are not being a bad parent if you need to take a break. Indeed, you will be a better parent if you do.

 Include my child in all parts of daily life: Encourage your child to take part in family fun, recreation activities and play that can be done safely. Laughing, running, chattering are all fun and good.


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Do many children get acquired or traumatic brain injuries?


Acquired and traumatic brain injury are two leading causes why children are admitted to the hospital. Brain injury is the leading cause of death in children. Teenagers and young adults between the ages of 15 and 24 are most likely to get a brain injury. An estimated 100,000 children a year are hospitalized for head injuries. Another 100,000 children either do not seek treatment or are treated and released from a medical facility.

Fletcher-Janzen, & Reynolds, 2004



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What does a brain injury mean for the health of my child?


A child's brain is a developing organ. Thus, occasionally as a child gets older, new symptoms can appear even years after the brain injury. Other children may have pain that never goes completely away or returns often. Children with a brain injury often complain of headaches that just won't go away, preventing them from paying attention or concentrating. This can lead to frustration and worry. Many students with a brain injury take medicine that can have side effects such as getting tired easily and often wanting to sleep more than normal, and slow thinking.

Treatment usually starts with stabilizing the child, meaning that doctors and nurses work to make sure a child is breathing well, the heart beating normally and blood pressure is normal. Doctors work first to stop any bleeding; then treatment will focus on healing wounds.

Once the child is medically stable, most children need rehabilitation before re-entering school. This might mean special treatment or therapy to help them begin to do things normally again. Getting better and returning to normalcy can take up to five years. Usually most improvement will happen in the first year. Typically, motor skills, those skills that allow a child to move around, return first. Higher level cognitive skills (the ability to think, reason and talk normally) usually return last.

A neuropsychological assessment (test of your child's ability to think and reason) can help in planning treatment. Speech, occupational and physical therapy are often part of the treatment. Other treatments may include psychotherapy for the child and the family, behavioral therapy and social skills training.


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What does a brain injury mean for my child’s intelligence and learning?


Every brain injury is different. Children with a brain injury may have problems affecting the ability to learn and reason. Children may need help when they first return to school after an injury or surgery. The support and help they need will depend on how bad the injury was, and could depend on how long they were out of school.

The problems faced by children with brain injuries are different than for children who were born with brain damage or developmental disabilities. Children with brain injuries may be left with "splinter skills," those being certain mental skills that are the same as before a child was injured. For example, a child might be able to read or write, but then have a problem remembering what is read. Some skills may seem fine; others are could be diminished or missing completely.

An evaluation (test of your child's ability to learn, think and reason) by a qualified psychologist or neuropsychologist is the first step to help your child. That helps to see your child's strengths and problem areas and help to decide what treatments and school supports will help your child.

Fletcher-Janzen, & Reynolds, 2004



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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric neurologist: A doctor who specializing in diagnosing and treating children with disorders of the central nervous system, including the brain and spinal cord as well as the peripheral nervous system.

Pediatric neurosurgeon: A doctor specializing in surgery for children on the brain, spine and other parts of the nervous system.

Pediatric urologist: A doctor specializing in diseases of the urinary organs (organs that produce, collect, and get rid of urine) in females and the urinary and sex organs in males.

Pediatric otolaryngologist: A doctor who specializes in treating conditions of the ears, nose and throat in children.

Pediatric brain injury specialists: A doctor, nurse and other medical professionals with special training to care for children with brain injuries.

Pediatric psychiatrist: A doctor specializing in the diagnosing and, if indicated, treating disorders of thinking, feeling and/or behavior affecting children, adolescents and families.

Pediatric psychologist: A professional who tests your child's ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child's ability to learn has been affected by a brain injury. An evaluation is painless and usually doesn't take long.

Pediatric neuropsychologist: A professional specializing in the relationship of abilities, behaviors and mental skills in children. Pediatric or child neuropsychologists test and treat children with developmental, mental, psychological, and neurological conditions or issues.

Behavior analyst: A professional who specializes in analyzing children's behaviors and identifying ways either to eliminate unwanted behaviors or encourage wanted behaviors.

Behavior therapist: A professional specializing in training caring adults to implement behavior plans either to eliminate unwanted behaviors or encourage wanted behaviors in children.

Pediatric physical therapist: A professional trained to help people to strengthen muscles and increase joint flexibility in their arms, legs and chest.

Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions. The therapist also helps figure out the impact on a child's daily living, e.g., getting dressed, eating. The therapist also can design and suggest assistive devices to improve problem areas.

Pediatric speech-language therapist: A professional who evaluates and treats communication disorders and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.


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What are some websites where I can learn more about traumatic brain injury?


National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/coma/coma.htm A website of the National Institute of Health.

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/headandbraininjuries.html A comprehensive source of links, it is a service of the U.S. National Library of Medicine and the National Institutes of Health.

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.

Brain Injury Association of America A wonderful resource full of useful information http://www.biausa.org


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What are some special books I can read with my child?


The Elephant Who Forgets: New Second Edition by Heather Snyder & Susan Beebe (Illustrator), 2005. A delightful children's book about a little elephant named "Elvin," who has a tree branch fall on his head. He can't count his figs anymore, gets mixed up at school, and doesn't get along with his friends. A visit to the neuropsychologist helps him understand that he's not a bad little elephant, but now has a brain injury. This book helps children, friends and classmates understand what it's like to have a brain injury. Written for kindergarten through elementary school.

All About Me (Also available in Spanish) by Roberta DePompei & Bob Cluett, 1998. "Stupid," "weird" and "dorky" are words that friends and classmates use to describe a child with a brain injury. Just when a child with a brain injury needs help and understanding the most, friends may disappear, make taunting remarks, or imitate behaviors. This hands-on, interactive booklet helps the child understand what it means to have a brain injury.

The child learns how to describe the help needed in school by using checklists and answering questions. This is a great teaching tool for therapists, educators and families.


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