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By Okey-Martins N

Naturally, human beings seek pleasure and avoid pain. We choose joy in place of sorrow; to live and not die (not sure about terrorists!); to be rich rather than poor; to pass and not fail at examinations. The positives are often the ideal and in many cases NORMAL. Nevertheless, there is in life, a time for everything! Whether we like it or not we must face challenges and the earlier society admits the reality that normality is in degrees, perfection nonexistent the better equipped members are to aim for the best and prepare for the worst. It is unlikely for one not to experience sorrow during one’s lifetime. In most cases however, the sorrow that people experience is momentary ones, passing as quickly as it comes. It is possible though that many persons can live their entire lives without knowing real sorrow.Real sorrow is despair, the type of inescapable despair that cannot be changed. It will always be there, so the person will have to change lifestyle and feelings to accommodate it. Permanent, life-long disability can produce this kind of sorrow. The news of pregnancy brings joy and hope but the unexpected birth of a disabled child usually doesn’t sustain that joy. People differ greatly in the way they deal with life experiences such as this.

Some will realize at once that the problem real, very real and cannot be wished away. They decide to meet it face to face and accept it. They quickly adjust to the reality and search for constructive ways to handle the situation. There are those who cannot adjust to the reality, but spend their lives in grief, mourning, and self pity feeling lost, unloved, hated, and bitter .It is natural to have these feelings because no one goes to the labor room expecting to have the arrival of a child who is disabled. Even with medical predictions, expectant mothers are hardly ever prepared emotionally for the advent of a disabled infant. Almost all pregnant women do sometimes have thoughts like “what if I give birth to a disabled child?”, but such thoughts are quickly dismissed.

When a child is born with a disability or when a diagnosis is first confirmed, it brings deep sorrow and disappointment for the entire family. The level of shock, disbelief and pain might be determined by the degree to which the disability is clearly visible or irreparable. If the condition is such as in Downs Syndrome, spastic cerebral palsy, or missing limbs, then the despair is more inescapable because the physical feature’ is a constant reminder of one’s pain. Such a case is initially too difficult to deal with than the problem of a child who is seemingly perfect but whose problem is internal or ‘unseen’…e.g. autism and mental retardation. In the latter case, the anxiety result from the fact that the actual extent of the problem is not known and parents are constantly at the mercy of the unpredictable future, watching, waiting and hoping (Buscaglia, 1983).

Grief / Mourning. Following the shocking news of a disability is usually sorrow, disappointment, and a period of self-pity which often results in grieving. It is like mourning the loss of the desired able child. According to Buscaglia (1983), it is a time for crying out, “a time of mourning the loss of the perfect healthy child” and parents say things like ‘it’s a lie”; “this cannot be happening to us”. In Nigeria, you hear things like “I’m finished’ ‘what have I done to deserve this curse’ or “they will say that I used the baby to make money’. It is endless and loaded with tears, disbelief and disappointment. Parents express these feelings sometimes by wishing the situation away. .Buscaglia quoted Pearl Buck as saying that many parents wish the child dead

Questioning. Parents begin to seek explanations and continue to ask more questions…’why me?’; ‘Is God testing my faith?’; ‘Is He punishing me for my past sins?”

Blame. Parents particularly, mothers may begin to blame themselves by regretting their actions or inactions. They may blame themselves for taking or not taking a particular drug or for choosing one hospital over the other. This can end in an unconscious acceptance of responsibility for their child’s condition. There is still indecision but feelings of guilt and condemnation begin to set in and further deplete the energy to face their condition.

Shame. This is another strong emotion commonly experienced by parents whose children have a disability .Shame is a notorious energy sapper. It robs parents of energy and opportunity to support and help their children. The concern is often ‘what will people say’; ‘will they not think I’m evil (especially if two siblings are affected…like some of the cases of autism in Nigeria now)? ‘Will they not ridicule me or even accuse me of exchanging my child’s destiny for wealth? In some cases, giving birth to a disabled child can result to instant abandonment or even divorce. In many other cases, it is thought to be a consequence of a false swearing/oath or a confirmation of guilt. These experiences are real and do bother parents a great deal. Some attempt to murder the child or commit suicide or both. Strong feelings of shame deplete self -esteem and makes one feel unworthy. Because of shame, some women even refuse to see their relatives for weeks, even years. “Shame reaches to the core of our being and shakes the pillar of our emotional life”. It shakes the pillar of our emotional life and when persistent can be very destructive. When people get married and are expecting their first baby, they hope for their babies to be the extensions of their best selves. Perhaps that’s why fathers seeing their infants for the first time are anxious to see if the babies resemble them in any way. In fact, they don’t stop searching to see themselves in their offspring until they get a reassurance. If they do not find a reflection of their best selves, but a disability, they may feel helpless, hopeless and ashamed.
Fear. Nothing perhaps can be as tormenting as the fears that bewilder parents with challenged children. Fear is an emotion that everyone experience at one time or the other. Humans are naturally fearful of what they don’t understand or cannot predict.
These fears may result from stereotypes or the images and impressions that we have acquired from experience. Parents may remember the frightful images of disabled persons they had met before or seen in a movie. Most of such images are often horrible and scary. They now imagine that that’s how their child might end up.

Uncertainty. Following fear is uncertainty. Uncertainty about the child’s future, the financial involvements, the quality of available professional services and about possible rejection by schools. This can be an overwhelming and intolerable experience for affected parents. Majority of parents breakdown, go into self-imposed exile, and depression.
Some parents however, pretend and try to prove to family and friends that they are strong and ready for whatever challenges come their way. They bottle up their pains, feign joy and love. They cry in the toilet or similar private places when alone. No matter how much they pretend, they too are going through a strong emotional turmoil, waiting and hoping. When such parents have children with non visible / physical disabilities such as autism, they make excuses. If the child is unable to respond to name when called, such parent might say “oh, he is very tired and doesn’t feel like talking”. This is denial of the fact, and like other defense mechanisms makes life more difficult in the long run. Once a disability occurs we have little choice other than seeking effective ways to remediate the condition. It is either we face our problems and feelings, accept them and take positive action, or we can deny their existence and push them out of consciousness. If we choose to push them out, we only repress these feelings and unconsciously develop defenses for them..

Defense mechanisms are not always bad. Often, we do it because, at the moment it is the best way we have for coping with whatever pressures are upon us. Most of us use denial, rationalization, sublimation, overcompensation (types of defence mechanisms) to maintain our everyday level of functioning. They are stop-gaps not permanent solutions. Sticking to our defences rather than constructive solutions can be emotionally conflicting and damaging. No doubt, it’s not easy to accept the reality and feelings that come with the sudden news of giving birth to a disabled child. It is natural to at first feel pain, shame, pity, anxiety, fear, guilt, etc. In my opinion, one must have fallen from mars not to feel same.

Unfortunately however, many parents in Nigeria stay too long in this phase. They worry so much, live in shame and self-pity and eventually hide their children at home. Oftentimes, when they seek help it’s not early enough. Parents should realize that they should seek help early and should NEVER settle with ‘sorry madam, your child’s case is hopeless’! Have hope even against all hopes. It’s possible that you have not met the right person with the right knowledge and skill. Some medical doctor’s know the symptoms of several disorders but lack knowledge of available treatments for some. Your child is a gift of God with great potentials that can be actualized. Hope results in creative action. I understand that as humans, there would be times when problems seem too gigantic to deal with and hope disappears. Nevertheless, we have a choice, to hope and continue to hope even against hope! In the words of Norman Cousins (1970), “Hope is the beginning of plans. It gives men a destination, a sense of direction for getting there and the energy to get started. It enlarges sensitivities; it gives proper value to feelings as well as to facts”. When parents get determined to act, they can move mountains. They learn more about their child’s conditions and how best to manage it; they network with professionals (in some cases educating them on new techniques!) and form parent support groups. They advocate for their children and insist that government recognize their special needs. They don’t stop writing to protest the unavailability of essential services. Determined parents are not selfish, they assist disabled children from poor backgrounds to access services even though parents are unable to afford to take them abroad. The parents we are talking about here are not the types that just sit down and complain that schools are rejecting their children, no, they take action! They, with the help of professionals educate school authorities and the public about the need to accept, include and integrate their children.

If you are a parent of a child with any form of disability, encourage yourself. Realise that you are not alone. Realise that a disability is not a disease and you need not be ashamed, it could happen to anybody and no one has a choice in this matter. Do not hide your child, cry out for help. Help might just be next door away. I hope that those of you who are policy makers, government officials, school proprietors, doctors, nurses, teachers, students and so on can appreciate the enormous task of parenting children with disabilities. Can you relate to the 24 hours experience of what parents go through every day? Try to visualize if you can, the often high costs of healthcare and of course the frustrations that come with a critical shortage of professionals. Doesn’t this bother you? I ‘m not asking for your pity…not at all. Action is what we need. I want somebody with a voice that can reach Aso Rock and the federal houses of legislature, who could tell those “normal” people in big houses that our children are being left behind…with no services or schools to go to.

We do not need to make parents feel ashamed of their children’s special needs.
Stop all negative attitudes against persons with disability such as starring.
We need to educate their ‘well’ counterparts about the fact of individual differences. Those with disabilities are simply different not diseased!
Do not encourage parents (whether directly or directly) to hide their challenged children at home. Support and encourage disability awareness and education campaigns in Nigeria.

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Related Links: Blue Ridge Autism Centre , Autism South Africa,  Autism Today Cure Autism Now  ,  Autism Speaks Talk Autism Autism Genetic Resource Exchange (AGRE) Autism Treatment Network (ATN) Combat Autism AUTISM SOCIETY OF AMERICA  ,COMMONWEALTH AUTISM SERVICE (formerly The Autism Program of Virginia - TAP-VA) , UNLOCKING AUTISM, AUTISM RESOURCES , PROJECT LIFESAVER, POLICE AND AUTISM: AVOIDING UNFORTUNATE SITUATIONS

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