When a child is diagnosed with epilepsy, parents often experience feelings of shock, anger, depression, inadequacy, shame and even guilt. "How could this happen?" and "Why did this happen to our child?" The important thing to remember is that these are normal reactions and will eventually pass.
Like all children, a child with epilepsy learns self-confidence and pride at home. All parents want to create a loving and supportive home where their child can grow, self-confident and safe, in an understanding and accepting environment. What your child learns at home about living with epilepsy has a great deal to do with what kind of adult he or she will become.
A child who learns to fear epilepsy, a child who is sheltered from life by well-meaning parents - may grow into an immature, dependent adult.
On the other hand, a child who is encouraged to view seizures as a temporary inconvenience, a child who takes part in activities with other children of the same age, a child who learns to participate in family and community life - has a much better chance of becoming a confident, independent adult. Be straightforward about epilepsy. Offer a simple, matter-of-fact explanation that, by your example, lets your child know that having epilepsy is nothing to be ashamed of.
All parents of children with epilepsy struggle to find the balance between nurturing and overprotecting their children. It is important to promote your child's independence. Like all children your child needs to try new things and learn from mistakes to grow into a self-reliant, responsible adult. Parents of children with epilepsy often find it especially difficult to set limits and rules for their children. Setting too many limits undermines self-confidence and fosters timidity, while setting too few rules may lead to behavioural problems.
When both parents are actively involved in their child's medical and social progress, a family harmony is created that will support and strengthen your child's character.
Encourage your child:
- to learn, explore and try new situations
- to have realistic, not pessimistic, expectations
- to express their feelings openly
- to accept seizures as a normal part of his or her life
- to find ways to explain epilepsy to others
- to focus on personal triumphs and other concerns, besides epilepsy.
Childhood Epilepsy: The Facts
As they grow older, some children have less intense and less frequent seizures. In fact, in about 50% of childhood epilepsy, seizures disappear completely.
With rare exceptions, seizures do not cause brain injury, and epilepsy rarely leads to mental retardation. Most children with epilepsy are not intellectually handicapped. They have the same range of mental abilities as other children.
Mental illness and epilepsy are separate, unrelated conditions. While some children with epilepsy do develop behavioural problems, these difficulties are more closely related to your child's experiences at home, school and society at large, than to the physical causes of epilepsy.
In most cases, epilepsy is not inherited. Parents do not directly transmit epilepsy to their children, except in some rare specific syndromes.
How Your Child Feels
Having seizures, getting accustomed to medication, constant visits to doctors, clinics or hospitals for special tests may have a temporary setback on your child's development.
Your child will worry about having seizures and about what other children will think. Your child may feel guilty about having a seizure or afraid of being punished for something that happened during the seizure. Reassure and comfort your child by explaining that what's happened is just part of the seizure. Encourage your child to get busy with something he or she likes to do. If medication fails to control seizures, some children may feel that it's their fault. Reassure your child that's not the case.
At all costs, avoid communicating your anxiety about the seizures to your child - he or she will begin to feel anxious too and lose self-confidence.
Your Child's Doctor
Good medical care is based on a partnership between the doctor, your child, and you. Well-informed parents are a doctor's best allies in managing a child's epilepsy. The bond of trust with your child's doctor is very important. To play a more active role in your child's care, follow these suggestions:
- Ask questions that will help you dispel myths and get rid of unfounded worries.
- Ask your doctor what to expect during diagnostic tests.
- Ask your doctor to explain instructions clearly, so that your child has no difficulty understanding them.
- Be assertive. If you don't understand, continue to ask questions until you're satisfied.
Remember, your doctor may never witness your child's seizures or realize when drug therapy is adversely affecting your child's behaviour. As a parent, it's your job to inform your doctor about your child's health, state of mind, reactions during seizures and other important facts.
Family & School
Like any chronic condition, epilepsy can disrupt family routines. Seizures, by their very nature, are unpredictable and can disrupt family outings or other planned events. Brothers and sisters may feel ignored and they may feel jealous that you love the child with epilepsy more. They may be having a difficult time coping with the ridicule or teasing of their friends. At school, the attitudes of teachers and behaviour of other students affect your child's disposition towards school. Here are some pointers that may help in the family setting and at school.
- Talk about epilepsy with the rest of the family and encourage your other children to ask questions. Epilepsy is a condition that is steeped in myths and misconceptions. More than likely your other children have been exposed to them at school by classmates. It is important to deal with this misinformation immediately and in an appropriate manner.
- Encourage all members of the family, including yourself, to treat the child like everyone else with respect to familial responsibilities and duties.
- Avoid the temptation to make brothers and sisters custodians of the child with epilepsy. That's your responsibility.
- When your child with epilepsy has a temper tantrum, never give in. Use the same disciplinary measures with all your children.
- Allow your child to participate in activities that he or she wants. Some experts feel that the risk of physical injury is secondary to the psychological hurt that might result if a child has her heart set on playing a particular sport and is told that she cannot because of epilepsy. In other words, "What's worse, a broken arm or a broken heart?"
- Meet with your child's teacher prior to each school year and discuss not only seizures and medications and their side effects on your child, but also his or her social development.
- If a teacher or anyone else that comes into contact with your child on a regular basis, i.e. scout leader or hockey coach, doubts their own ability in dealing with seizures, try contacting an epilepsy association. Most provide training sessions dealing with seizure recognition and first aid. Distribute pamphlets or videos to help teachers and students understand epilepsy.
- You might even encourage the teacher to focus on epilepsy in one or two science classes.
Remember, most children with epilepsy do well in school. Learning difficulties are more often associated with behavioural rather than physical problems. Many children with epilepsy end up finding rewarding careers. They may meet prejudice and misunderstanding along the way, but this is less of a problem if they're well qualified or have marketable skills.
Parents who are interested in learning more about their child's epilepsy can click on MORE INFORMATION to access relevant books on the subject or click on the link below to visit KidsProtect website.
