Acquired Brain Injury
This information is written for family members of children with significant ABI. When a child has a significant brain injury, nearly every aspect of that family's life will be affected. Family members often experience feelings of
A family whose child has suffered an acquired brain injury (ABI) sees a major alteration in the child's life and family life. Changes in your child may include decreased physical and mental capabilities. There are many variations in the difficulties your child may have because of an acquired brain injury.
It takes a significant amount of time for families to adjust to a family member being injured, and it also takes a significant amount of time, if ever, for the ABI child to recognize the difficulties they have. Research indicates that a strong social support system is an important factor for the future well being of the ABI child and their family.
Parents feel great relief when their child regains consciousness. However, the relief is followed by a sense of loss and grief as it becomes clear that their child will be profoundly impacted and very different from the child they had known.
Parents of children with ABI often have to give up their previous perceptions of the child and construct a "new" perception. One author described this as adjusting to one child— who is known and loved—being replaced by a "different child."
For mothers of ABI children, there are often feelings of anxiety, sadness, and social isolation. But family members also describe extraordinary joy in being able to help and care for someone who has special needs. The mother/child relationship is highly valued by the mother and gives special meaning to the role of being a mother.
Unfortunately, many caregivers find themselves isolated, with little assistance in caregiving activities. There are often inadequate resources and social support systems, and very little social recognition and appreciation for what they do.
For additional information about family caregiver responses, please contact a local mental health professional or view our list of resources.
In the first hours, days, and sometimes weeks after a child's injury, parents may remain in a state of shock. This is characterized by
- Little sense of time;
- Forgetfulness; and
- A general feeling of emotional numbness.
This shock is experienced by nearly all family members who have children with severe injuries. However, the duration and intensity varies.
For additional information about shock reaction to ABI, please contact a local mental health professional or view our list of resources.
Family members will experience extended grieving for the loss of the child they "knew" prior to the injury. This period involves recollections of the child pre-injury, and the loss of what "might have been." The loss of what "might have been" is mixed with fear and hope of "what will be."
The reality emerges that their child may need long-term care, may never be able to live independently, and may always need a responsible adult to look out for them. This new reality is raises concerns about who will care for the child as the parents age.
Grief is a profound process that may last for years, but it is a normal process. The ability to share grief with other families can help with the healing process.
For additional information about grief and ABI, please contact a local mental health professional or view ourlist of resources.
Anxiety is a normal response when a child suffers a significant injury.
Family members often come together for support, to avoid being consumed by their individual anxiety and fear. There is shared concern about quality medical care and adequate funds (or adequate insurance coverage) to handle current and future medical needs.
However, anxiety may become a chronic condition for family members, even after the initial response has faded. Parents of children with ABI often continue to endure a sense of generalized anxiety and express worry about "what is going to happen next."
For additional information about anxiety with ABI, please contact a local mental health professional or view ourlist of resources.
Families of children with acquired brain injury may experience a period of denial.
Denial may be manifested at first by the hope that their child will improve and perhaps even be normal again. This is the mind's method of denying the extreme injury and its profound impact. Denial can give the family time to begin processing what has happened and to incorporate the changes into their "reality."
Denial may also be displayed by a family going to extremes to find the "perfect" rehabilitation program. This "perfect" program, if only it could be found, would allow their child to be rehabilitated to "almost normal" function. If denial continues over months (or years), it can lead family members to give a message to the child that he or she is a failure and should be better "if they would only try."
Denial can serve a very useful purpose during the early stages of an injury, but its continued use creates a distorted reality, one that will probably never exist and can lead to significant frustration.
For additional information about denial and ABI, please contact a local mental health professional or view our list of resources.
Families of children with ABI nearly always go through a period of anger about the events that occurred. This anger may be generalized at the world or at God, or the anger may be directed at a particular person or circumstance.
Events surrounding the injury can become the object of the anger. Often there is some "logical" connection between the anger and events surrounding the accident. For example, "The railroad should have had a guard gate at the crossing," or "The driver of the other car should have had their lights turned on."
Part of the anger is the parents' rage over the loss of their child's "future life." This anger and rage can move from inanimate objects to organizations, or to family members. Suddenly, rather than being angry at the railroad, a parent is angry at their spouse for letting the child ride in a friend's car.
Loss and despair can also be converted to anger at family members. Words spoken in anger during these times can be extremely destructive. If you find anger is becoming a problem or that your anger is increasing, it is important to talk to a counselor or therapist.
Anger can be a stage of adjustment, but it cannot be a stage that you become trapped in. Anger can be directed constructively, as in the formation of MADD (Mothers Against Drunk Drivers).
For additional information about anger and ABI, please contact a local mental health professional or view our list of resources.
Frustration is a common emotional response in families. It often comes after the shock, denial, anxiety, and anger have diminished. Frustration, however, may be chronic.
Daily, there are tasks, demands, expectations, and situations that the family has to deal with. Concern over finances, school, and medical treatment can lead to irritation.
The reality of dealing with problems that have no short term—and maybe no long term— answers can be overwhelming. Difficult situations and demanding tasks are part of the new reality. How you handle those demands will determine your frustration level.
Counseling and support groups can help reduce the frustration and help you make healthy decisions.
For additional information about frustration and ABI, please contact a local mental health professional or view our list of resources.
Families of a child with ABI often go through a period of depression. Depression is a normal response to a catastrophic event.
Hopelessness and renewed hope may alternate during the recovery phase. There are points when rehabilitation may not increase function or abilities. At those times, depression and doubts will recur. You may simply describe these as "blue" times. You might sleep more and have a hard time awakening.
If the depression lingers beyond several weeks at any given time, you should consult with your physician or counselor for advice. Support groups and talking with others who have gone through similar situations can be very helpful.
For additional information about depression and ABI, please contact a local mental health professional or view our list of resources.
Many families of children with ABI endure feelings of guilt and blame. Most acquired brain injuries are the result of trauma, so families naturally consider "what if" scenarios that would have avoided the injury.
This can be mental torture for family members. For example, parents may think "if we had just not let her ride with a friend…" Second guessing creates a spiral of uncertainty and confusion, and the self-blame can be horrendous.
Anger can sometimes turn into feelings of guilt; at other times it is related to rage and aggression toward family members.
Guilt is an expected response. However, it is important to maintain control over the feelings of guilt and to be rational in assuming responsibility for the events.
For additional information about guilt and ABI, please contact a local mental health professional or view ourlist of resources.