I intend this as a message to mothers who have children living with disabilities. Having a child living with a disability can take its toll on the mind of the caregiver, which in most cases, is the mother of the disabled child.
Over the years, it has been discovered that women with children living with disabilities are likely to go into depression at one point or the other in their lifetime.
There are several things that can affect the mind of the mother of a child living with a disability. However, to effectively take care of a child that has a disability, the mother has to be mentally, physically, emotionally and spiritually stable. The mother needs as much care as the child she is taking care of, if not more.
The initial thoughts that may go through the mind of a mother (especially one living in Africa) may be, what will people say? or Why me? What have I done?
In some parts of Africa, there are some people who do not regard disability as a medical condition but may insinuate that a child is disabled as a result of money ritual, infidelity by the wife or sin committed by the parents of the child.
On the other hand, the parents of the disabled child may think their child’s condition is as a result of witchcraft. This is bound to cause stress and conflict within the family.
In some religious circles, children with disabilities have been accused of being witches and may be beaten, chained and starved while being forced to denounce any form of association with witchcraft.
The government can check these negative beliefs by educating the public through different means such as, adverts, jingles, drama, music, seminars and teaching pupils from elementary school about disabilities.
For some parents that decide to seek medical help for their disabled children, they may also have challenges getting the appropriate medical treatment and rehabilitation therapy that their children require.
In Nigeria for instance, workers of public hospitals often go on strike and parents of these children may need to visit private hospitals. Bills of well-equipped private hospitals are quite high while some other private hospitals may not have the equipment or technical expertise to handle the situation. Some indigent parents are forced to take their children to native doctors for treatment.
Nigeria has also witnessed an increase in loss of medical professionals to developed countries in recent times. This may be due to the fact that these professionals perceive that there are better opportunities in those countries. Sometimes these parents complain that some of the Nigerian public hospitals are still using outdated and non-functional equipment.
Another issue that causes stress for the parents of children living with disabilities is locating a rehabilitation centre for their children’s therapy. Most indigent parents use the public hospitals where they can find a physiotherapist, occupational therapist, speech therapist, etc.
Some parents have to travel for several hours to get to the nearest public hospital that has a well-equipped rehabilitation centre in Lagos State. A lot of the parents prefer the Lagos University State Teaching Hospital and the National Orthopedic Hospital, Igbobi. To take such long journeys may cause a lot of physical, emotional and financial stress for the family.
Most indigent family members have to use public transportation to get to these hospitals. Nigeria’s main means of public transportation which is the commercial bus is not disability friendly. These buses are not adequate for wheelchair users. Therefore, where a child living with a disability has become a teenager, the mother may still need to carry the child physically on her back to go from her house to the hospital. Some of these parents may stop taking their children for therapy either due to backache or because there are no funds to charter a taxi. Taking the child for therapy will mean a loss of income for that day as they may need to spend the whole day at the hospital waiting to see the doctor.
What the government can do in this instance is to ensure that there are rehabilitation centres at community health centres in each state. They may open for two or three days in a week to attend to patients. This will definitely be a good initiative as parents don’t have to go far to seek therapy for their disabled children.
The financial implication of caring for a child with disability is huge especially if the mother needs to stay at home to look after the child. In some cases, the financial strain coupled with other external pressures, can break a marriage, if not handled with care.
If a marriage is broken because of the presence of a child living with disability, oftentimes the child is left with the mother.
In such an instance, the mother needs support. If the mother can get support from her family, that will take some burden off her. If that is not available, the woman can join support groups. The members of these groups are mostly mothers who have children with disabilities. In most cases, the mother will able to share her burden with other others in the same situation and also benefit from activities that will enhance her child’s life.
The mother also needs to learn to be calm. She needs to understand that she is not the first person to have a child with disability and she won’t be the last. What her child is going through is a medical condition. In most instances, this can be managed with drugs, surgeries and therapies.
In the case of neurological disabilities such as cerebral palsy, autism etc, the mother needs to manage her expectations about how fast the child should improve. As of today, there is no cure for these types of disabilities but they can be managed through therapy. Most mothers give up on their children when they have tried a few therapies and there seems to be no immediate improvement. Treatment for these medical conditions cannot be compared to taking drugs for malaria. Therapies are used to manage the medical conditions to ensure the child can live with some form of independence.
The mother of the child needs to learn how to reduce stress so that she doesn’t break down mentally and physically.
One way for her to do this is to find a crèche or school that can take care of her child even for a few hours in a day. This will allow the mother to have some time to care for herself and also find a viable business to do to generate income.
Exercise is also a good way to reduce stress. If all a mother can do is to take a stroll without her child in the evening, it will clear her mind and it is also a form of relaxation.
As much as possible, she needs to guard her heart against all forms of negativity, fear and doubt. She should surround herself with positive people and choose to be happy. Everybody is fighting a battle. Theirs may just be different from yours.
Truly, being a mother of a child with disabilities in a country where there is little or no help from the government can really be challenging.
However, it is best to be determined to live the best life that you can possibly live.
Ayinde, a lawyer, is the founder of Diary of a Special Needs Mum Initiative.
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