Caring for children with special needs

This is a very challenging and emotional topic for me because I am a young parent.  I understand what it means to have a child and struggle to come up with the best strategies for a wholesome care.

The night I brought my first baby home remains unforgettable because no one told me that the bundle of joy may not sleep throughout the night, as he had not adjusted to the diurnal rhythm of life outside the womb. For a few more days, we kept vigil and had to hazard guesses of what he actually wanted as he cried and refused to sleep when the rest of us were actually ready to go to bed.

Children are a gift, but they are equally a challenge when it comes to wholesome care.  As they grow older, the challenge becomes more sophisticated when they come up with more demands on the intellectual, social and emotional resources of the parents. It is amazing how, in our days, parents are still on call to ensure the marriage of their children succeed and their grandchildren are well catered for.

There is an apparent challenge to the parental function in our time because of accentuated psychosocial stimulation that our children are contending with. We buy more sophisticated toys, take them to high-profile schools and even take them on holidays to faraway lands, but it seems we may not have fully established the necessary connection with them to facilitate a wholesome elaboration of their natural endowments.

This role becomes more challenging when the baby has a special need. These children are those with malfunctioning of the brain arising from a number of causes, which could be due to some viral infection during pregnancy, affecting the brain of the growing foetus. It may also arise due to a difficult delivery, where quacks attempt to forcefully bring out the baby, thereby causing damage to the fragile brain.

Reckless consumption of unprescribed drugs during pregnancy can damage the brain of a growing foetus, just as unprofessional exposure to radiation during pregnancy may also be problematic. Jaundice in the newborn, which may arise from varied causes, may be lethal to the immature brain. A number of babies are born apparently normal, but as they grow, they may start showing signs of incompetence in achieving the developmental milestones possibly due to genetic factors.

The malfunctioning could be in terms of deficits in acquiring language and executing speech, cognitive status incomparable to their age. Some may have associated seizures and a handful will be unable to execute social tasks, as they are unusually withdrawn or become very restless and hyperactive.

In Africa, we had lived in denial of the care of these children because of ignorance. We had employed myths to excuse our irresponsibility by describing them as spirits who should be abandoned to be taken care of by the gods. A good number are actually physically and emotionally abused, with the prospect that they may die.

As we get a bit more aware, more cases emerge and parents face the challenge of the care of these special children. Some marriages have broken up, especially when the man feels it’s the woman that is responsible for bringing forth such a child. A number of mothers have dropped out of brilliant career to care for these children, just as some relocate abroad for better care and escape the stigma we ascribe to them.

This may explain the apathy in seeking help in the hospital, especially from specialists who can take care of them. The care is usually multidisciplinary, involving child psychiatrist, speech therapist, psychologists, educators, social workers, surgeons-orthopaedics and neurosurgeons. The ultimate mandate is to get the best out of these wonderful children.

This is crucial because it has been established that some of these children are peculiarly endowed to perform prodigies. Those in this category are usually called ‘idiot savants.’  Some are fantastic when it comes to singing, playing certain musical instruments, operating the computer and other cognitive tasks. The challenge of this intervention, especially for the special educators, is to identify and capitalise on this peculiar function and maximise it.

There is a need for specially empowered educational facilities for these children, although some may cope in regular schools, with robust assistance. These parents need support, especially financial, because these children have special needs that make extra demands on their finances.

They should not hesitate to join the network of parents of children with special needs, which may lighten emotional burden as they network and share experiences with others facing similar challenges. There is the need for virile public education to be hosted by our state ministries of health to address issues of stigma associated with these children and their parents, protect them from being abused and eliminate causal factors identified, especially poor antenatal care.