My child is intellectually impaired; how do I cope?

It is painful for anyone to realise that there is something wrong with his or her child. Regardless of the cause of the disability, parents undergo a great deal of emotional strain caused by feelings of guilt, helplessness, and isolation.

Share your problems and seek solutions together.

Although expressing one’s feelings at this point can be difficult, discussing problems and finding solutions together helps in accepting the child’s disability.

It always helps to meet others with similar problems who have managed to cope positively with the situation. Whenever possible, both parents should go together to visit the doctor, specialist or therapist. It is better for both to hear what they have to say regarding treatment and management of the child. If one parent goes along, the other parent will get second-hand information, which may not be perfectly accurate, These visits will also provide parents with an opportunity to discuss and obtain advice regarding particular problems which they cannot handle without help.

Seek professional help early in the child’s life.

It is extremely important to detect a disability and take appropriate steps to improving or managing the child’s condition as early in the child’s life as possible. Early childhood and pre-school years are critical in the growth and development of your child. Detecting developmental delays and disabilities during these years and taking prompt follow-up action may help limit the progression of the disability and prevent future problems.

Very often parents will wait until their child with special needs is a teenager before seeking professional advice. When a child has had no training in self-help skills or has never experienced a school environment before, late-stage intervention may not be able to produce the expected results. However if the disability is detected early in life and is dealt with during childhood, significant improvements in the child’s condition may be possible.

Share responsibilities.

Coping with a child who has a disability takes extra time and effort, which may tend to disrupt normal family life. The only way to overcome this is for both parents to share the workload at home. If one or both parents are working, this may not be possible. However, they can spend time with their child in the evenings, during holidays, and on weekends. A timetable may be helpful to allocate tasks effectively. If there is domestic help, this person can also share the workload, but total care of the child should never be handed over to someone who is not a permanent member of the family.

Unfortunately, in some cases the entire responsibility of handling and taking care of the child is entrusted to domestic help. This only results in neglect of the child and a lack of progress in his or her development.

In a situation where the mother has to take on the entire responsibility due to the father’s work schedule outside the home, she may find that she has very little time to herself. It is essential that she set aside time for herself and not neglect her own needs.

Do not neglect other interests of other members of your family.

In order to make sure that the entire family life is not centred around this one child, both parents should cultivate other interests or hobbies and set aside time to spend with other members of the family, including making time for each other.

Find a suitable intervention programme for your child.

As stated earlier, seek professional guidance in developing the child’s skill early on. Depending on the disability, if detected early enough, an intervention programme that includes infant stimulation activities and physiotherapy can be started soon after birth.

During the pre-school years, as soon as the child is ready for group interaction, he or she can be enrolled in a pre-school for a few hours each day. During this time, parents should start looking for a special school to place the child in as early as possible. When the child is older, he or she can either continue in the special school or perhaps be placed in the Special Unit of a regular school. For information regarding these Special Units, contact the Special Education branch of the Ministry of Education. They will direct you to the government school with a Special Unit nearest to where you live.

Brothers and sisters have an important role to play.

Children tend to imitate their parents in thought and action. Therefore it is important that parents treat their disabled child with respect, love, and affection that will help the other children in the family learn how to treat the child with dignity and love.

However, there will be times when other siblings will be embarrassed that they have a disabled brother or sister. They should be encouraged to talk about their feelings and parents should try to solve problems as they arise. Letting them talk about the situation will help them cope with it. For example, they may encounter other parents who will not let their children play with them because of misconceptions about disabilities, including that the condition is contagious.

 

Also, other children may talk about the disabled sibling in a hurtful manner. Discuss these problems with your children and help them to react in a positive manner in such situations. See a counsellor if necessary too.

 

It is also important that siblings be given as much information as possible regarding the disability, or else they may form their own conclusions, developing distorted views and misconceptions.

 

Genetic counselling is still uncommon in Sri Lanka. If your child’s disability is genetic, other children should be made aware of their own risk of having a child with a similar condition. Further information about genetic counselling can be obtained from the Medical College, Colombo.

Reactions of extended family members and friends are difficult to predict and sometimes difficult to deal with. Some may reject the child totally, feeling that he or she is an embarrassment to the family. Others may ignore the disability, believing that the child “will grow out of it”.

On the other hand, some may go to the other extreme of spoiling the child, feeling that because of the disability the child cannot be held responsible for his or her own actions. This will only result in complex behaviour problems that will cause difficulties for the child and the parents.

 

In order to avoid these problems, it is important to provide extended family and friends with as much information as possible regarding the child’s disability. They should be told how they can assist in the training and management of the child.

The most important guideline for all family members, relatives and friends should always be to treat the disabled child as an individual and not as a disease.