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Telling Your Children About TBI

Telling Your Children About TBI

Tracy
Some adults try to protect their children from the truth because they think they’re too young to understand. But truthfully kids of almost any age are aware that something’s wrong. They want to know what’s happening. They want to understand. Protecting your children by withholding information can actually backfire. It’s not something you want to do. Children have active imaginations and they may actually create a scenario that’s worse than the reality.

So it’s…it’s important. You’ve got to communicate with Emily about what’s happening to Tom in a way that she can understand as a child.
 
Michelle
I just don’t know what to say to her.

Julie
You know we had a hard time explaining Sam’s injury to our daughter’s son, Stevie. He was 7 when Sam was injured, and he was really worried about his favorite uncle. We got some advice from a counselor, and this is what we came up with. We explained to Stevie that the brain is like a command station of a space ship. And if a meteorite hit the command station, the crew wouldn’t be able to control what that space ship does. So a person with TBI may have difficulty walking, talking, hearing, or seeing because the command station is damaged.

Carl
It worked well, and helped Stevie understand. They came out to visit when Sam had been in the hospital for a few months, and Stevie wasn’t scared at all.

Tracy
You know I’ve also heard a computer analogy that may work for kids who are a little older - - like Emily. It’s something like this: knowing that the brain is the computer for the body. And when it’s injured, it doesn’t boot up properly, runs slower, has…has less memory just like your computer at home. And those are terms that most kids are familiar with these days.

It’s just important that kids hear about the injury in terms that they can understand. Has Emily ever broken a bone?

Michelle
Yes, she has. She broke her arm last year when she was skateboarding with our neighbor. She didn’t even cry, and she thought the cast was really cool.

Tracy
Well, you could tell her that while broken bones will usually heal and be just as good as new, the fact is Tom’s brain injury may not heal as completely. A cut may take a few days to heal; a broken bone might take a few weeks. Getting better after a brain injury can take months, even years. And sometimes, that person will not get back to 100%.

Even though Tom might look the same, he may still be injured. As time goes by and Tom recovers, those injuries might include having a hard time paying attention or remembering things that you tell him. He might get tired easily. He might need to sleep. He might actually say things or do things that seem strange or embarrassing. He might shout. He might get angry for seemingly no apparent reason.

Julie
Yeah, Sam went through a time when he was angry a lot. It can be pretty scary, even for adults, not to mention for kids.

Tracy
It’s important to understand where that anger comes from. Many people develop anger of course as a direct effect of the actual damage to the brain. In other words, the parts of the brain that normally stop those angry flare-ups and those feelings have been damaged and they…they just don’t do their jobs as well as they used to.

But the person with TBI may also be mad because he just can’t do things he used to do. His feelings might be hurt because others might be treating him differently than before the injury.

The bottom line is…brain injury changes people. Changes can be confusing. Remind your kids that the changes they are seeing are caused by the brain injury. There’s no way around it - - it’s challenging to put TBI into simple terms that a child can understand. 

Michelle
Tracy, do you have any suggestions on how I can help Travis and Emily deal with our situation? To be honest, I don’t feel very well equipped to help them cope, with something I’m struggling with myself.

Julie
Michelle, you are doing the best you can in a very difficult situation. Don’t be so hard on yourself.

Tracy
Julie’s right. Cut yourself some slack. You’re all going through a stressful time, but this can be particularly confusing and really unsettling for children.

Let’s see now for some specifics - - since Emily hasn’t seen Tom yet, it’s important that you provide that information to her about what to expect before she sees him. For example, you could explain to her in advance what she may see in the hospital. You know how Tom might look, what kind of equipment might be there, all those things that can be a little frightening. 

Now as Tom continues his recovery, encourage the kids to talk about what familiar characteristics and behaviors that they’re starting to see. And you want to be careful not to set a timeframe for his recovery. It’s important that you encourage your kids to talk about their… their fears, their hopes, their worries.

Also, encourage other family members and friends, to share time with your children and act as a sounding board.

When it comes to everyday life, another thing you can do is set up a routine for your kids. Consistent dinner times, consistent bed times... that usually helps. But you also want to be flexible. Take your cue from your child about when she wants to resume her normal routine. And when it’s possible, encourage the kids to stay involved with their friends and their school activities.

Michelle
That’s been hard, because Emily’s got an active schedule. Before Tom got hurt, I spent a lot of time just running Emily and her friends around.

Tracy
Oh I understand, Michelle. But now you know as a caregiver, you…you might not be as available to drive your kids places. But if your kids want to attend their activities, ask friends, ask relatives to take them. Don’t be afraid to ask. You can also ask friends to take over your caring for your loved one when you need to go watch your child in a game or…or a school program. And it might give you a much-needed break. Oh and when it comes to school, it’s a good idea to meet with your children’s teachers, explain what’s happened.

Michelle
You know, the other thing that I’m facing is how the kids seem to be lashing out at me more than ever before.
 
Tracy
You know sometimes your kids may say upsetting things to you. Just listening can be the best support for them. You know you’re all in this together, but sometimes it’s easiest to take out our grief and our anger on those that we’re the closest to.

Now with that in mind, you want to try to stay alert for changes in your kids’ behavior. And you might want to get counseling for the kids to help them with their grief, especially if they appear depressed or they are adopting those risky behaviors.

But recognize that some kids may pull away for a while. Others may regress to a younger behavior, becoming very dependent, demanding constant attention, or even exploding in to temper tantrums. These behaviors should return to normal over time as your child adjusts. Teenagers may even be embarrassed about their parent with TBI. You need to talk to them about how to respond to comments about how their parent looks, or behaves, or speaks. 

There is a nice resource for younger kids that was developed by Sesame Street Workshop it’s called “Changes.” It’s not specific to TBI, but it does address some common challenges that kid may face when a parent has been injured. You’ll find the web address for the videos in your Guide for Caregivers.

Michelle
Thank you, Tracy. I’ll keep these ideas in mind.

Tracy
You know Michelle, helping Emily, and Travis to you know understand what may happen in the coming months it will help them deal with their fears.

Okay why don’t we… why don’t we take a little break. We’ll pick up in a few minutes. Okay.

Glossary

A-D   E-H   I-L   M-P   Q-Z

Absence Seizures – A non-convulsive generalized seizure when a person may appear to be staring into space with or without jerking or twitching movements of the eye muscles. These seizures may last for seconds, or even tens of seconds, with full recovery of consciousness and no confusion. People experiencing absence seizures sometimes move from one location to another without any purpose.

Abstract Thinking – Being able to apply abstract concepts to new situations and surroundings.

Acceleration – To increase speed and/or change velocity.

Alopecia – A condition of a loss of hair or baldness.

Amnesia – A loss of memory. Amnesia can be caused by brain injury, shock, fatigue, repression, illness and sometimes anesthesia.

Angiogram – A procedure in which a dye is injected through a thin tube into a blood vessel. Special x-ray pictures are taken, allowing your health care provider to view the blood vessels of the brain, heart or other part of the body. Also called an arteriogram for arteries or venogram for veins.

Anorexia – A loss of appetite, especially when prolonged over time.

Anosmia – The decrease or loss of the sense of smell.

Anoxia – Absence of oxygen supply to an organ.

Anoxic Brain Injury – Injury to the brain due to severe lack of oxygen. This usually happens when blood is unable to flow to the brain due to certain injuries,bleeding, or cardiac arrest.

Apraxia – The loss or impairment of the ability to perform complex coordinated movements despite having the desire and the physical ability to perform the movements.

Arthralgia – Joint pain or stiffness in a joint.

Ataxia – The inability to coordinate the movement of muscles. Ataxia may affect the fingers, hands, arms, legs, body, speech, or eye movements.

Axons – Also known as nerve fibers, an axon is a long, slender projection of a nerve cell, or neuron, that conducts electrical impulses away from the neuron's cell body or soma. Axons are the primary transmission lines of the nervous system.

Basal Ganglia – The deep brain structures that help start and control voluntary movements and postures.

Bipolar Disorder – Also known as manic-depressive illness, bipolar disorder is a brain disorder that causes unusual shifts in a person’s mood, energy, and ability to function.

Blast Injuries – Injuries that result from the complex pressure wave generated by an explosion. The explosion causes an instantaneous rise in pressure over atmospheric pressure that creates a blast over pressurization wave. Injuries to organs surrounded by fluid, such as the brain and air filled organs such as the ear, lung and gastrointestinal tract are common.

Brain – The main organ of the central nervous system (CNS). It is divided into the cerebrum, brainstem, and cerebellum. The brain regulates virtually all human activity.

Brain Stem – The lower extension of the brain where it connects to the spinal cord. Neurological functions located in the brainstem include those necessary for survival (breathing, heart rate) and for arousal (being awake and alert).

Cerebellum – The portion of the brain (located in the back) that helps coordinate movement.

Cerebral Hypoxia – The inadequate oxygen supply to brain tissue. Mild or moderate cerebral hypoxia is sometimes known as diffuse cerebral hypoxia. It can cause confusion and fainting, but its effects are usually reversible.

Cerebral Spinal Fluid – A colorless fluid that is found around and inside the brain and spinal cord, offering some protection and cushioning the brain.

Cerebrum – The largest part of the brain. It is divided into two hemispheres, or halves. It controls motor, sensory, and higher mental functions, such as thought, reason, emotion, and memory.

Chronic Subdural Hematoma – An "old" collection of blood and blood breakdown products between the surface of the brain and its outermost covering (the dura).

Closed Head Injury – Injury to structures within the skull or the brain that do not result in an opening in the, such as a direct blow to the head or a blast. Injuries may range from a mild concussion to potentially fatal.

Coma – A state of unconsciousness from which the person is not aware of the environment nor able to perform voluntary actions.

Computerized Axial Tomography, or CT or CAT Scan – A painless procedure in which x-rays are passed through the affected area at different angles, detected by a scanner, and analyzed by a computer. CT scan images show bones and blood collections more clearly than conventional x-rays. The computer can combine individual images to produce a three-dimensional view.

Concussion – A blow, jarring, shaking or other non-penetrating injury to the brain which causes a temporary decrease in normal brain activity.

Consciousness – The state of awareness of the self and the environment.

Contusion – A bruise. In terms of brain injury, a contusion refers to bruising of the brain tissues.

Coup-Contrecoup – An injury to the brain that occurs when an impact or violent motion brings the head to a sudden stop, causing injury to the impact site and the opposite side of the brain. This is also known as an acceleration / deceleration injury.

Cranium – Skull.

Deceleration – To reduce speed or go more slowly.

Diffuse – Widely spread.

Diffuse Axonal Injury, or DAI – Widespread injury of large nerve fibers (axons covered with myelin).

Diffuse Brain Injury – Injury to cells in many areas of the brain rather than in one specific location.

Diplopia – Seeing two images of a single object; double vision.

Dura Mater – The outermost of three membranes protecting the brain and spinal cord. It is tough and leather like.

Dysarthria – Difficulty in forming words or speaking them because of weakness of the muscles used in speaking. Tongue movements are usually labored and the rate of speaking may be very slow. Voice quality may be abnormal, usually excessively nasal; volume may be weak; drooling may occur.

Dyskinesia – Involuntary movements most often seen in the arms or legs.

Electroencephalograph, or EEG – A test that measures electrical activity of the brain that is recorded from electrodes placed on the scalp.

Epidural Hematoma – Bleeding into the area between the skull and the dura mater.

Euphoria – An exaggerated or abnormal sense of well-being not based on reality.

Executive Functions – The ability to formulate and carry out plans effectively. These functions are essential for independent, creative and socially constructive behavior.

Expressive Aphasia – also known as Broca’s aphasia. A difficulty in expressing oneself in speech and writing. Characterized by knowing what one wants to say but being unable to find the words to say what is being thought. There is lack of spontaneous speech, words are often labored over and sentences are short and incomplete.

Focal Brain Injury – Damage confined to a small area of the brain. The focal damage is most often at the point where the head hits an object or where an object, such as a bullet, enters the brain.

Frontal Lobe – The front part of the brain; involved in planning, organizing, problem solving, selective attention, personality and a variety of "higher cognitive functions."

Generalized Tonic-Clonic Seizures – A seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness.

Glasgow Coma Scale – A scale used for measuring level of consciousness. Scoring is determined by three factors: eye opening ability, verbal responsiveness, and motor responsiveness. The scores range from lowest level of responsiveness a 3 to highest level of responsiveness a 15.

Hematoma – A collection of blood caused by the rupture or tearing of blood vessels.

Herniation/Herniated –Compression of brain tissue caused by high pressure inside the skull that can lead to death if not aggressively treated.

Hypertension – The medical term for high blood pressure.

Hypotension – The medical term for low blood pressure.

Hypoxia – Decreased oxygen levels in an organ, such as the brain.

Intracranial Pressure (ICP) Monitor – A monitoring device used to determine the pressure within the brain. It is used to assess potential complications resulting from increased pressure exerted on the brain.

Impaired Initiation – The diminished ability to take the first step in beginning an action.

Improvised Explosive Devices, or IEDs – An IED can be almost anything with any type of material and initiator. It is a “homemade” device that is designed to cause death or injury by using explosives alone or in combination with toxic chemicals, biological toxins, or radiological material. IEDs can be produced in varying sizes, functioning methods, containers, and delivery methods. IEDs can utilize commercial or military explosives, homemade explosives, or military ordinance and ordinance components.

Intracerebral Hematoma – Collection of blood inside the brain tissue.

Intracerebral Hemorrhage – A subtype of intracranial hemorrhage that occurs within the brain tissue itself. Intracerebral hemorrhage can be caused by brain trauma, or it can occur spontaneously in hemorrhagic stroke.

Intracranial Pressure, or ICP – The amount of pressure inside the skull resulting from the brain tissue, cerebrospinal fluid and blood volume. This pressure normally ranges from 0-10 mm Hg.

Limbic System – A group of structures deep within the brain that are associated with emotion and motivation.

Lobe – A part of the brain located in each of the two hemispheres. Each hemisphere of the cerebrum is divided into four sections known as the frontal lobe, the parietal lobe, the occipital lobe, and the temporal lobe.

Magnetic Resonance Imaging, or MRI – A test that uses a powerful magnet linked to a computer to make detailed pictures of soft tissues inside the body.

Meninges –The covering of the brain that consists of three layers: the dura mater, the arachnoid mater, and the pia mater. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.

Mild Traumatic Brain Injury, or mTBI – Also referred to as a concussion, mTBI involves a disruption of brain function caused by trauma. This disruption is characterized by, but not limited to, a loss of consciousness for less than thirty minutes, and posttraumatic amnesia lasting for less than 24 hours, and a Glasgow coma Scale of 13 – 15.

Military Acute Concussion Evaluation, or MACE – A standardized mental status exam that is used to evaluate concussion in theater. This screening tool was developed to evaluate a person with a suspected concussion.

Myalgia – Pain in one or more muscles.

Neurocognitive – Of, relating to, or involving the brain and the ability to think, remember or process thoughts.

Neurons – A nerve cell that can receive and send information by way of connections with other nerve cells.

Neuropsychology – A science that combines the study of the brain’s structures and functions with psychological processes and human behaviors.

Neuroradiological Tests – Tests using computer-assisted brain scans. These tests allow providers to visualize the brain. Tests may include: CT Scan, MRI, Angiogram, EEG, SPECT Scan, PET Scan, DTI Scan.

Neurotransmitters – Chemicals found within the brain that are released from a neuron which transmit signals from neuron to neuron across gaps called synapses. These chemicals either excite or inhibit specific reactions, such as in motor neurons, the neurotransmitter causes contraction of muscles through stimulation of muscle fibers.

Nystagmus – Involuntary, usually rapid movement of the eyeballs (side to side or up and down).

Occipital Lobe – The occipital lobes are found at the back of the brain. These lobes receive signals from the eyes, process those signals, allow people to understand what they are seeing, and influence how people process colors and shapes.

Ocular – Relating to the eye.

Open Head Injury – Trauma to the brain that occurs from a skull fracture or penetrating injury.

Parietal Lobe – The part of the brain that is involved with movement, and with the processing of signals received from other areas of the brain such as vision, hearing, motor, sensory and memory.

Penetrating Head Injury – A brain injury in which an object pierces the skull and enters the brain tissue.

Perseveration – The repeated and uncontrollable use of the same words or actions regardless of the situation.

Photophobia – An intolerance to light; or a painful sensitivity to strong light.

Positron Emission Tomography, or PET Scan – a specialized imaging technique that uses an injection of a short-lived radioactive substance and special CT scans. PET scanning provides information about the body's chemistry not available through other procedures. Unlike other imaging techniques that look at structures of the brain, PET looks at the energy use of different parts of the brain.

Post Deployment Health Assessment, or PDHA – The military’s global health screening that occurs when a unit or service member returns from an overseas deployment. The purpose of this screening is to review each service member's current health, mental health or psychosocial issues commonly associated with deployments, special medications taken during the deployment, possible deployment-related occupational/environmental exposures, and to discuss deployment-related health concerns.

Post Deployment Health Reassessment, or PDHRA – A second assessment used 3-6 months following redeployment or return of service members from overseas deployment. PDHRA extends the continuum of care for deployment related heath concerns and provides education, screening, assessment and access to care.

Post Traumatic Stress Disorder, or PTSD – A condition where memories of traumatic events are re-lived after the fact.

Post-traumatic Amnesia, or PTA – The inability to remember things following a traumatic event. Memory loss caused by brain damage or severe emotional injury.

Rancho Los Amigos Scale of Cognitive Functioning – A scale used to follow the recovery of the TBI survivor and to determine when he or she is ready to begin a structured rehabilitation program.

Receptive Aphasia – Also known as Wernicke’s aphasia characterized by difficulty understanding spoken words. The aphasic individual themselves have difficulty interpreting and categorizing sounds and speak in what is referred to as a “word salad” with random words put together unintelligibly to form sentences.

Seizure – Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms. Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity throughout the brain.

Seizures – A sudden or severe change in behavior due to excessive electrical activity in the brain. Many types of seizures cause loss of consciousness with twitching or shaking of the body. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances.

Shaken Baby Syndrome – A severe form of head injury that occurs when an infant or small child is shaken forcibly enough to cause the brain to bounce against the skull, causing brain injury.

Single-photon Emission Computed Tomography, or SPECT Scan – Test that uses the injection of a weak radioactive substance into a vein, followed by pictures taken with special cameras. This test is similar to a PET scan and provides information on the energy being used by the brain.

Skull Fracture – A break, split or crack in the skull.

Subdural Hematoma – Bleeding confined to the area between the outer-most covering of the brain (dura) and the brain.

Temporal Lobes – Temporal lobes are located at about ear level, and are the main memory center of the brain, contributing to both long-term and short-term memories. The temporal lobe is also involved with understanding what is heard, and with the ability to speak. An area on the right side is involved in visual memory and helps people recognize objects and faces. An area on the left side is involved in verbal memory and helps people remember and understand language. The back area of the temporal lobes helps people interpret the emotions and reactions of others.

Thalamus – A part of the brain that is primarily responsible for relaying sensory information from other parts of the brain to the cerebral cortex.

Tinnitus – “Ringing in the ears" or another noise that seems to originate in the ears or head.

Traumatic Brain Injury, or TBI – An injury to the brain as the result of trauma to the head.

Whiplash – An injury to the neck caused when the head is violently thrown back and forth such as in a rear end car collision.

Related Information:
Communicating with Your Child
Building Family Ties
Helping Children
Glossary
Frequently Asked Questions
"He really won’t tell me the whole story because I think he doesn’t want to scare me. But, he brought me a piece of metal back home that was embedded in the wall right behind him. He said it missed his head by a few inches. He said that he thanks God every day that he’s still alive, and that’s why he brought the piece of metal home, to show me that that’s how close he had come to dying." -  Lynn C-S.

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