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The pain of raising a mentally retarded child

By Vision Reporter

Added 11th June 2012 03:55 PM

Parenting a mentally retarded child is not easy yet cases of this condition are on the rise. Sometimes, this is as a result of infection before and after birth

The pain of raising a mentally retarded child

Parenting a mentally retarded child is not easy yet cases of this condition are on the rise. Sometimes, this is as a result of infection before and after birth


Parenting a mentally retarded child is not easy yet cases of this condition are on the rise. Sometimes, this is as a result of infection before and after birth

REAL LIFE

Whatever happened to you, Rhona. Where did your words go? Why won’t you just be normal, like any other child? You see, sometimes I want to slap you. But then again I can’t. In your small world, perhaps, undressing and walking about naked is totally logical.

In your mind, maybe, you never understand that you should wear sanitary towels during your menstruation period. And yes, to you, it is just reasonable that the best defence you can put up is fi ghting when we try to force you to wear pads.

After all, you have this of incredible energy in your arms; I would never know how you got it. These are only a few of the questions that run through my mind looking at my 20-year-old mentally retarded sister. I feel an overwhelming sense of despair.

You never know what else to do when you wake up and she has soiled her beddings. You just never know what to make of her, when you wake and she has thrown all the day’s meals in a trash can. You can never know what to do when she refuses to eat food for two days in a row; or when she refuses to wear sanitary towels and stains everything with blood.

Growing up, I never really understood why she was not talking or walking. While the rest of us played out and about, Rhona was always there — stuck in one place. Perhaps it was that swelling that she was born with on the “soft part” of her head. At just about three months, she underwent an operation to have the swelling removed and it was successful. She started walking at about six years of age.

Talking was often with much diffi culty so much that sometimes she had to bang her fi st hard on the table for some words to come out. But at least she always managed to say something. As she grew older, she seemed keen to go with us to school. But after a week of ridicule from her Primary One peers, she could not go on.

In fact, we too were ridiculed as “siblings of the musilu”. Because she was slow in everything, other children laughed at her. If she wet her underwear in class, word would spread from the pre-primary section to the P7 class. Needless to say it was disheartening when everyone gathered to look at my “musilu” sister. I could have told them to mind their business or maybe explained that it was a condition that could happen to anyone. But as a 10-year-old, I often burst into tears. I could never understand why my sister was the way she was.

Why, if the operation was successful, was she not growing normally?
I started dreading school because I never knew what to tell anyone who asked about Rhona. At lunch time, everyone gathered to look at how she fed like a baby; as she often smeared food all over her mouth. School just sucked.

My parents were later to overprotect Rhona. Dad tried to homeschool her. She had keen interest in crocheting and my mother was somewhat confident that since Rhona could not go to school, she would perhaps make a living out of crocheting.

Afraid of the bullying from the rest of the world, my parents jealously guarded Rhona so much that after their demise, we didn’t know where to exactly start. I don’t know if she is mourning or grieving in her own way, but Rhona has since deteriorated.

The few words she used to say are no more. Her mannerisms have changed from the once calm girl to rough. She cannot bathe herself. She cannot take herself to the loo and she won’t feed herself. If it rains and we are not anywhere near to take her inside the house, be sure she will get drenched.

She unconsciously shakes her head all the time, laughs to herself all the time, as saliva sometimes fl ows freely. At some point you are afraid, her neck could break as a result of shaking it. She keeps scratching her face so much that it has now darkened yet she is light skinned. She laughs to herself without reason.

Some mornings when you think she has woken up in high spirits, she won’t accept to wear anything. If she does, she will remove it in a couple of minutes and soak it right away; or at least soak all her dresses and stay naked with all her breasts out.

You want to bury your head in the sand if you have visitors and she shows up in the sitting room naked.

Sometimes she gets up and throws out everything you have in the house; from the utensils to food. On the day when she appears “normal” she will wake up and bathe every 15 minutes. Should you stop her, she will hit you with all her might.

We will never know if she has a fever. We have to keep a doctor on standby to keep monitoring her. But she will never say anything. The words totally disappeared. Where they went, I will never know.

Whether the doctors touched an important part of her brain during that operation they carried out on her head, I will never know. The stark reality is accepting and parenting you the way you are, Rhona Owomugisha.

Rhona’s sister

What causes mental retardation?

By Vision Reporter Dr. Raymond Odokonyero, a mental health expert and psychiatrist at Butabika and Mulago hospitals, says Rhona could be facing mental retardation out of trauma.

“Any given child knows who their providers are. Death of parents can spark off any illnesses. Given Rhona’s background, this could be regression. Some form of mental retardation takes that direction,” he explains.

“Unfortunately most of these children are written off without understanding the problem.” Dr. Odokonyero says cases of mental retardation are becoming quite common among children. The reasons, he explains are because of several infections that could occur before and after birth “There are infections got while the child is still in the uterus; say brain infections.

Then there are infections at after birth such as HIV and meningitis, which are got from mother to child. There are also problems at birth such as prolonged labour, premature and low birth weight,” he explains.

Dr. Sheila Ndyanabangyi, a mental health expert at the Ministry of Health says sometimes it can be genetic. “A child might inherit traits from their family through their genes, which means they are much more at risk than other people. Genetic disorders can be inherited in the same way a person can inherit other traits such as eye and hair colour, height and intelligence.” says Dr. Ndyanabangyi

Handling the outbursts

With sudden outbursts and mood swings, parenting a mentally retarded child is not easy and many end up stressed. Psychologist Muwanga gives the following tips:

Maintain a calm, low tone. Speaking louder doesn’t make you understandable.

Look them in the eye. It lets them know that you care about how they are reacting.
 

  • Never lose your temper and fl are up at a mentally ill individual. You will only worsen the situation. Coping tips
     
  • Acceptance. It may be confusing, frustrating and heartbreaking, but try to come to terms with the fact that the patient is part of you, it is not his/her fault and youcan’t change it.
     
  • Walk a day in their shoes. Go with them to their doctor’s appointments, ask as many questions as you can. Tag along for rehabilitation or counselling and participate in their favourite activities.
     
  • The more you understand your patient’s routine, the easier it will be to understand their condition.
     
  • Seek advice and encouragement. It can be your parents, a cousin, a trusted relative or family friend. Talk about your frustrations and concerns.
     
  • Be patient. Your mentally ill patient cannot help the state of mind they are in. They may not even know they’re being childish, unfriendly or hyperactive. Try to excuse their behaviour at times, realising that it is a part of their illness.
     
  • Get away for a while. Have someone to be on standby to help you out once in a while.
     
  • Go for counseling to ease stress.

    Symptoms to look out for

  • Children, who are otherwise normal, may suddenly develop fever, headache, vomiting, convulsions and loss of consciousness.
     
  • The symptoms also vary depending on the level of retardation. Mild retardation may be associated with lack of curiosity and quiet behaviour. Severe mental retardation is associated with infant-like behaviour even as the child grows older. He or she may not be able do simple things like to answer nature’s call or feeding himself.

    Prevalence rate in Uganda

While statistics are scanty, Uganda has a high incidence of mental health problems. According to a 2006 household survey by the Uganda Bureau of Statistics, 4% of Ugandan households have at least one member with a mental disability.

Can the condition be detected early?
Doctors say it depends on the cause. For instance, if retardation is caused by chromosomal or other genetic disorders, it is often apparent from infancy; when the baby is not showing any sign of development like sitting or crawling. This can be detected as early as a year old.

Some conditions can be diagnosed by ultrasound as early as when the mother is 10 weeks pregnant and the condition treated if it is due to treatable complications. Others cannot be diagnosed until childhood.

Dr. Odokonyero says forms of mental retardation are not treatable medically, but deliberate efforts can be made to help the child. “The primary goal is to develop the person’s potential to the fullest. Special education and training may begin as early as infancy. This includes social skills to help the child function as normally as possible,” he explains.

Ndyanabangyi says it is important for patients to have a psychiatrist evaluate them for other affective disorders and treat those disorders. Dr. Odokonyero further explains that doctors know the level of mental retardation after examining the level of the Intelligence Quotient (IQ).When a child’s IQ is 50-75, we know that is mild retardation, this person can live on their own. 50-35, they can live in the special needs homes and be helped adapt to lifeskills such as feeding and bathing. At 20-35, the IQ is severe, while IQ that is less than 20 is bad and this means there are many other disorders affecting the child.

Determining the IQ
Dr. Ndyanabangyi, says parents can know the IQ of their children from psychologists and psychiatrists. “There is a mechanism to calculate that. There are many psychological tests available to measure the intelligence or mental functioning of the child; parents can visit their children’s psychologists or psychiatrists,” says Ndyanabangyi.

Once calculated using their medical and technical means, Josiah Muwanga a private clinical psychologist say IQ above 140 is the sign of a genius. An average to very intelligent child would score between 100-120 and an average child would between 75-90.

“So we can safely say that those children having an IQ under 80 are mentally defi cient and, therefore, challenged children. I call upon parents to endeavour to take their children for testing say between four to nine years of age, so that their condition can be improved before it is too late,” says Muwanga.

Where to seek help
Dr. Odokonyero says there are two mental health units; one at Mulago hospital and another at Butabika hospital where people can seek expert advice, rehabilitation and treatment in case of some diseases/ infections. He also advises
parents with mentally retarded children to consider putting them in special homes.

Prevention
Feed well during pregnancy to avoid having a low birth weight baby. A balanced diet rich in protein, vitamins and minerals is required for pregnant women and young children for normal brain development. Lack of adequate nutrients can have direct and indirect effects on brain development.

Ensure that you take your child for immunisation. Some mental illnesses arise from the six killer diseases which are immunisable.

l Avoid drinking alcohol or abusing drugs as this could put your baby at risk.

l Be cautious on when to conceive. Getting pregnant before 21 years puts the mother at risk of prolonged labour which normally results in oxygen deprivation in babies which affects their brains.

Until they are born, babies receive their food and oxygen from the mother.

Immediately after birth, babies begin to breathe on their own. Normally, this transition occurs smoothly.

When, for any reason, the delivery becomes is prolonged or complicated, oxygen supply to the baby is diminished.

“The brain is sensitive to oxygen deprivation, this can result in brain damage,”
says Dr. Odokonyero. Conceiving after 35 years of age means a risk of chromosome defect. That is, human cells contain genes, which control growth and maturation of the brain.

“If such a gene is abnormal, it can lead to derangement of metabolic reactions and thereby cause mental retardation,” he explains.

The pain of raising a mentally retarded child

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