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Archive for the ‘stigma’ Category

Two days ago we all learnt about a suicide bombing at Baghdad’s two pet markets, in Iraq, that killed nearly 75 people, wounding 150 people and hundreds of birds and other pet animals. Many of you may not even have read it as these days we have all become immune to such suicide bombings and killings as they have become the daily news in all news papers! and we have lost the sensitivity to even grieve over such matters.

But the most horrible fact about these two bombings were the two suicide bombers were girls with Down’s syndrome! and a person with Down’s syndrome does not have normal intellectual capacity and he/she is a mentally challenged person. How can such a person willingly give consent to be a suicide bomber? Surely, the girls here must have been tricked into it! and that is the most tragic part of the whole incident. How can this be an act of “jihadi”? Would Allah praise such an act??

Many of you may have heard of the term “Down’s syndrome”, but may not know what exactly the term refers to. Let me briefly explain.

Down’s syndrome is a life long condition of disability that results in mental retardation. The retardation can be of mild/moderate/severe degree. It is a chromosomal anomaly called “Trisomy 21” in which there occurs                  3 chromosomes in set 21 instead of 2 chromosomes. Human beings have 23 pairs of chromosomes (46 in total) in each cell of the body, except in sex cells, eggs and sperms, where only 23 chromosomes are present. These 23 become 46 when the egg and the sperm  get fertilized to procreate and the species continues with 46. These 46 chromosomes are arranged in pairs of two and there are 23 such sets. But in Down syndrome child, the 21st set of chromosomes contain 3 chromosomes instead of the usual two (totalling to 47) and this excess genetic material in each cell results in a dsabling condition called Down’s syndrome, named after the scientist Langer Down who described this anomaly.

I have mentioned Trisomy 21 as the cause of this disability. In a small 2 to 3% of Downs syndrome, the cause is Mosaic Trisomy 21 that appears not in all body cells but only in few of the cells. Whether it is plain Trisomy 21 or mosaic, the features are the same and the degree of disability does not depend on the kind of the cause.

All children born in this condition share very similar facial characteristics that make them all look alike. They generally have a round, flat face with slanted eyes. They slant upwards and they have an extra skin fold on their eye lids that accentuate this slant. But they can have normal vision like anybody else. The babies have poor muscle tone and are floppy at birth. Slowly their muscle tone improves as they grow. It is also observed that these kids have a single crease running on their palm instead of the usual three deep ones that run on our palms (some normal kids also have only one crease on their palm, but not have down’s syndrome). They also have a large gap between their big toe and the second toe that usually grips the sandal. Their tongue usually protrudes outside as they have a smaller oral-cavity and a larger base of the tongue that keeps their mouth slightly open always. This may make them vulnerable to many respiratory infections.

Like in any other condition of mental retardation, these children also show delayed developmental milestones. Their motor (movement), speech and language, social and cognitive development are all slow. The condition can be detected at birth itself by the pediatrician and it is obligatory on their part to inform the baby’s condition to the parents at that time. But unfortunately in India, many Downs Syndrome births go undetected or uninformed to parents that it may jeopardize early interventional strategies that can mitigate the damages to a large extent.

The condition can not be cured. But their abilities can improve to a very large extent by training that is given in special schools. A positive and an accepting attitude on part of parents, siblings and other relatives can help the child to a very large extent to improve its skills. These days many early intervention programmes are taken up at various special centres to children of a much younger age, as soon as it is identified. Physio therapy programmes can improve their muscles’ and joints’ strengths that improve their mobility skills and their gross and fine motor skills (bigger muscles and smaller muscles of the body). Most of them have speech delays and speech problems. They may lack clarity in their speech, articulation problems, language reception and expression problems that can be reduced through speech therapy. Most of these children are friendly by nature and they draw attention from others through their smiling face and readiness to strike friendship with others. This also makes them very vulnerable and children need to be protected from any kind of abuse. Their social skills make them very endearing to all and they are very helpful in nature. Many of them love music and dance. Depending on their intellectual level, they can be taught functional academics that teach them the basic reading and writing skills. They are soon trained in vocations of their interest and later on as adults they can work in sheltered workshops under supervision. Some downs syndrome adults can lead fairly independent life.

As I mentioned earlier, they are prone to many respiratory diseases and many children have congenital (by birth) heart defects too. These children may have to undergo heart surgeries at a later date when they can withstand the surgery.

Coming to the sexuality aspect, they also have normal sexual desires like any other person. But their cognitive deficits may make them vulnerable to sexual abuse and exploitation. And as adults, they get isolated from the mainstream and this loneliness also makes them vulnerable to any kind of affection offered by the abusers. They need to be given sex education like any other person. The fertility rate is reduced in women with Downs syndrome and researchers believe that males may be sterile. But one case of a downs male fathering a child has been cited in journals. Many females with Downs are fertile and there are many instances of them carrying their pregnancy to term and successfully delivering kids – either downs child or a normal child. These are cases from abroad and in India, it is very difficult to get such a person married and expect to carry out the responsibility of a marriage relationship and rearing a child. But it is not impossible with family support. Just because somebody is disabled, we can not deny them their marital and sexual rights. It is purely their family decision.

When such are the abilities/differences in their ability levels of Downs syndrome persons, it is highly condemnable that two downs syndrome girls’ vulnerability was used and abused by the terrorist gang in Iraq and they have now fallen victims to their suicidal bombing pact!

Our heartfelt condolences to the families of these two innocent Down syndrome girls.

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I have decided to conclude the post today, however lengthy or short it may become !

We have discussed the various LD markers and also the probable causes. OK, Once we have identified a child with these difficulties, what do we do?

The child needs an assessment by an Educational psychologist or a Special Educator who may administer various tests to find out the its abilities in the areas of reading, writing, spelling and arithmetic. It is important to rule out any hearing or vision problems before conducting these tests. It is also important to collect information about the family history/background to rule out any serious emotional disturbances. If the child is suspected to be experiencing serious emotional disturbances either at school or at home, those disturbances need to be addressed first before proceeding with the tests.

The tests may be standardized psychological tests where norms have been developed earlier so that our child’s performance may be compared to those norms and its degree of difficulty assessed. Or psychologists can develop their own tests based on the criteria that a child of that particular grade/age needs to be proficient with. Some curriculum based tests can also be administered to find out the child’s grade level. A child is said to be experiencing Learning Disability if its performance is below 2 grade levels.For example, if a child who is in 4th Grade is only able to read and write at 2nd Grade level or even less, he could be having LD. If the child is good in arithmetic but not in languages or if the child is good in languages and is poor in computing the numbers, it could be a case of Specific Learning Disability. These labels are used only to exchange information between professionals and to understand the remedial measures required for the child, but not to demoralize the child or the parent. Professionals need to be extremely sensitive to the feelings of the parents and the child. We need to validate their feelings of shock, disappointment, disillusionment, anger or denial, that they may express when they learn about this condition of their child. Professionals need to offer counselling to the parents to make them understand that their child despite the difficulties, can still be able to come up in life in one or the other area of skill. Even academics can improve to a great extent given one-on-one remedial teaching, depending on the degree of disability – it could be mild, moderate or severe. Earlier the problem identified, earlier the remedial measures could start and better would be the outcome. Parents’ acceptance of the issue is the most important factor in proceeding further to seek help for the child to overcome the difficulties.

Remedial classes can be arranged by the school itself or parents need to identify such facilities in their area and the child can attend the classes 2 or 3 or 4 times a week according to its learning needs. Many schools in Bangalore have Resource Centres now that cater to the learning needs of these students. Their specific problems are addressed in these classes unlike in a regular tuition class. Teachers at school can be requested to reduce the burden of home-work to these students so that extra time can be devoted to the learning needs of the child. Teachers can also be requested to give due credits to the oral expression of these students than to evaluate them based only on their written expression.

Many parents realize that their child is having severe problems only when the child reaches the high school. Suddenly the syllabus also increases, parental and teacher pressure increase and the boy or the girl becomes self-conscious of the difficulties that they are undergoing and the insults that they hear from all sides, that they can get into depression. Their frustrations mount and they may become aggressive. Added to this would be the turbulence of entering puberty and various confusions that ensue. Counselling can help them realize their strengths first and then the weaknesses and how to overcome these weaknesses. It is important to keep in touch with the school teacher too to understand the academic and non-academic behaviour of the child at school. The school teachers who handle the child need to be sensitized of the difficulties the student is facing and how they can cooperate with the professional and the parent to mitigate the problems and boost the confidence of the child.

NIMHANS and St.Johns Hospital are the two places where certificate of LD is issued that can be produced at the State or the Central Board of Education to avail concessions in Languages (the language of medium to continue and the other two languages can be dropped), or substitution of a subject with another(a student I know of selected Music instead of Maths in CBSE) or extra time to write in the exam (for slow writers) or even the services of a scribe(for the severely dysgraphic) can be sought.

The Central Government has also introduced National Institute of Open Schooling System (NIOS)  for 10th and 12th Grade level exams, the Certificates of which are considered on par with the Board Certificates, based on which the student can get admission into mainstream college later on. The advantage of NIOS system is that the student can choose 5 or 6 subjects of his choice from a variety of unconventional subject-combinations. The exams are held once in 6 months (April and October), the student is allowed to write exams in as many subjects as he is comfortable with, which he would have studied at his own pace. The student need to get registered in one of the approved institutions of NIOS syllabus, can attend regular school or schools that offer NIOS syllabus and pass the exams at his own pace.

In case of severely learning disabled students, it is very important to recognize their particular skills and start training them in any Vocation of their choice from the High school level itself. Many schools with NIOS syllabus also have in-house vocational training facilities. Parents need to understand that it is important to make the student self-reliant later on with a vocation learnt earlier, than force the student to pursue higher education when the interest and abilities of the student do not permit this.

To conclude the series of posts on Dyslexia or Learning Disability, that started with a mention of the movie Taare Zameen Par by Director and actor Aamir Khan and how the sensitive portrayal and treatment of the subject catch the heart strings of the movie goers, I would like to tell all the parents and teachers (and other readers) that it is of utmost importance to help any child build good emotional health first, then teach the child all the Life skills, like, communication, decision making, inter personal relationship, emotional management etc, and then give due attention to its academic health too. Recognize a child’s hidden potentials/talents, encourage the child to build on those potentials, acknowledge every desirable behaviour and every small achievement that the child scores, correct the undesirable behaviour with support and love and BE  THERE  EMOTIONALLY  WITH  YOUR  CHILD  ALWAYS – IN ITS SUCCESSES and MORE SO IN ITS FAILURES!

I would like to quote here (my favourite)  sensitive plea of a child to its parents –

“LOVE  ME  MOST  WHEN  I  DESERVE  IT  THE  LEAST;  FOR  IT  IS  THEN  THAT  I  NEED  IT  MOST” !

Series Concluded

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yesterday was world epilepsy day – a day to bring awareness to public about epilepsy, a neurological disorder wherein there is a disturbance in the normal electrical activity of the brain. this disturbance causes seizures (‘fits’ in lay person’s language). it may affect the consciousness or the behaviour or the sensory perception of the affected person. the type of seizure, its manifestation varies from person to person. it can be fully cured by a very strict regimen of medication for about 3 to 5 years, depending on the individual case.

there is a big social stigma attached to this disorder and hence many a times the disorder is hidden by the family members and not given the required treatment. lay people are sometimes taken aback by the affected person’s behaviour as they do not have knowledge about this condition. this makes them develop certain myths and misconceptions about this condition and hence a stigma gets attached to the condition.

as a mental health worker i would like to inform you all that epilepsy is not to be feared or hidden from society. the condition generally occurs during childhood, but it can manifest at any age during adulthood too. the causes of seizures may be infections, like, encephelitis, brain injury due to fall or motor accident, high fever (febrile fits), in some people even head bath with hot water or it can occur due to any structural abnormality in brain that has occured during the developmental stage of the brain. it can just be a single episode of seizure in a person’s lifetime or many such episodes can occur, when it is called epileptic seizure.

it is very important to get the person the due medical attention. the condition should never be neglected or ignored. left untreated, it can cause further damage to brain cells or can even cause gradual impairment of intellectual faculties like perception, understanding, memory or thinking. family physicians, pediatricians or neurologists can treat this condition. diagnostic procedure like EEG (Electro Encephalogram) can determine the specific area of abnormal electric activity in the brain. CT scan or MRI can detect any abnormal growth like tumours in the brain. treatment and dosage depend on the age, family history, probable cause and the pattern of seizures. duration of medication is usually for 3 to 5 years.

there are people who have fought this condition bravely, kept it under control and have made huge achievements in life. Mr. Jonty Rhodes, world famous cricketer of south africa, is brilliant on the field and is a good batsman. our own bangalorean, Mr. K.C.Janardhan, is a world famous calligrapher (handwriting expert) whose services are used by many Management Institutions abroad and in India. thus people with epilepsy are as normal as any of us and may exceed us in many capabilities. it is the obligation of every one of us to render them support, encouragement and accord total respect to them as a productive member of our society.

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