Caring for a child with special needs?

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By Dr Sithabiso Alice Dube

The challenges facedby parents with a child who has a disability or special needs can be overwhelming. One such condition is cerebral palsy. But there are ways that can help affected families cope and enjoy life as normal as possible.


Dr Dube

 

Martha’s fourth pregnancy was uneventful. She had gone through the same antenatal clinics with her previous three and nothing much was different. her ultrasound scans were fine and all her other test results came back normal. At 38 years old she had planned for this to be her last pregnancy and was looking forward to her tiny bundle of joy. her labour, though hard and painful, lasted eight hours, which was normal. But she knew something was wrong as soon as she saw a glimpse of her baby after delivery. The infant was lying floppy in the arms of the midwife and not crying. This was the beginning of martha’s journey of caring for a child with cerebral palsy.

Cerebral palsy is an abnormality of movement and postural tone that is acquired at an early age, even before birth. Signs of cerebral pals
y usually become evident in the first year of life. Infants with cerebral palsy are usually slow to reach developmental milestones such as rolling over, sitting, crawling, and walking. Common to all individuals with cerebral palsy is difficulty controlling and coordinating muscles. This makes even very simple movements difficult. There is no cure but with early and ongoing treatment, however, the disabilities associated with the condition can be reduced.

Risk factors linked with cerebral palsy include medical problems in the mother, for example infections, seizures or thyroid disorders. Birth defects or specific hereditary and genetic conditions may also be a cause. Other risks include complications in labour and delivery, premature birth, low birth weight, severe jaundice after birth and multiple births. If there is a lack of oxygen reaching the brain before, during or after birth there is a high risk of damage to the developing brain. damage can also occur early in life due to infection (such as meningitis), head injury, lack of oxygen, or bleeding. Sometimes the cause is never known, as in Martha’s case.

When a child is diagnosed with a disabling condition, the whole family faces new challenges. There is understandably shock and disbelief on learning your child is disadvantaged or handicapped. It is quite usual at the beginning for parents to block from their thoughts the fact that their child is going to need extra help and will have to be cared for in a special way, perhaps for life. It is as if denial of the problem will make it go away. The gradual acceptance of the situation is often painful. Both parents may agonise over the question of whether one or the other is somehow to blame for their child’s condition. All parents go through this kind of anguish.

DrDube 1Jill Curtis of Special Needs UK writes: “As a parent of a child with a disability or with special needs you will be only too aware of all the challenges you encounter when you try to get the best help you can for your child. Sadly the list of problems faced by so many children, and their families, never seems to end. Each disability brings with it its own special concerns, but there are many issues which parents share in common.”

How then do parents cope with cerebral palsy? Firstly, it is vital to find some sort of support system. A circle of support can make a big difference in helping you cope with cerebral palsy and  its effects. As a parent, you may feel grief and guilt over your child’s disability. Your doctor can help you locate support groups, organisations and counselling services in your community. Your child may benefit from family support programmes, school programmes and counselling, too. Care at home involves love, support, comfort, guidance, security and protection. Physical and mental fitness is also very important, as well as healthy wellbeing and quality of life.

It is important to gather as much information as possible. The more facts you have at your disposal, the more confidence you will have to speak up for your child. This is important from day one, and will become even more so when there are battles to be fought about education and other help required such as physiotherapy, occupational therapy, speech and language therapy and psychotherapy. In Africa, where traditional beliefs are rife, a child with a disability is often shunned as a curse to the family and the situation frequently results in divorce or neglect of the child. Education dispels these myths.

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You may need help in getshutterstock_144749713ting the right equipment, finding ways of entertaining your child, and even in gaining some respite for yourself. don’t fall into the way of thinking that only you can care for your child. A worn-out parent will be of little help, especially if you have other children to care for. It must be kept in mind that they need time with their mother and father, too.

Remember, too, that having a child with special needs can put an additional strain on any marriage, so try your best to get out of the home together, even if only for the occasional meal. make sure you talk to each other about your fears and worries. Talk to other people too. Talk to close friends, talk to the school and any local groups.

Set up a rota of family or friends who will give you a short break. Look for local charities and organisations that will be only too glad to find people to help you and your child. This will have the added advantage that it will gain local awareness for a particular disability. Ask at the local schools or colleges if some of the older pupils will come in and play with your child for a while.


CEREBRAL PALSY: THE FACTS 

  • Cerebral palsy is an abnormality of motor function, the ability to move and control movements.
  • The condition is acquired at an early age, usually less than one year old.
  • Cerebral palsy is due to a brain abnormality that does not progress in severity.
  • Causes include prematurity, genetic disorders, strokes, and infection of the brain.
  • Taking certain precautions during pregnancy might decrease the risk of cerebral palsy.
  • Asphyxia, a lack of oxygen to the brain at birth, is not as common a cause of cerebral palsy as had been thought previously.
  • There are different types of cerebral palsy based on symptoms – spastic, hypotonic, choreoathetoid, and mixed types.
  • The best approach for diagnosis, treatment and management is through an interdisciplinary team.
  • Cerebral palsy maybe associated with many other medical conditions, including mental retardation or seizures. Many of these conditions can be treated with an improved quality of life.
  • Many children with cerebral palsy have a normal intellect and have no seizures.
  • Treatment of cerebral palsy is for the symptoms only; there are few treatments for the underlying causes.
  • There are many alternative medicines promoted for the treatment of cerebral palsy that have never been proven to be helpful. Families and advocates of persons with cerebral palsy should be aware of the lack of scientific basis for these treatments.

 

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