Hydrocephalus

Cerebrospinal fluid(CSF) a clear liquid which is very similar to the liquid portion of blood(plasma) and contains various salts and products such as sodium, calcium, bicarbonate, chloride, magnesium and glucose.The purpose of the Cerebrospinal Fluid (CSF) is as a medium for the transport of the chemicals to and from the brain, and also to provide buoyancy and protection for the brain. When there is excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain, there is a neurological disorder called Hydrocephalus.

Neha is 24 year old hydrocephalic patient. She can be recognized with her enlarged head. Neha is very hyperactive and is most of the time tied to a chair. She has tendency to be destructive and will fling objects randomly if left unsupervised. She is not able to perform any activities because of her poor eye-hand coordination but she does not like to sit alone. She likes to come to school everyday and sit in the company of other children, watching them play, smiling at times. On the days, when there is holiday, she is very hyperactive and restless at home and insists that she needs to go to school, many times displaying temper tantrums.

Normally, in infancy (usually before 3 years of age) in the case of Hydrocephalus, the head size grows too rapidly and the head becomes too large. The baby's soft spot at the top of the head may be full or tense, and the veins distended.

There are a number of causes of hydrocephalus; these are either developmental or genetic. Genes are not passed from generation to generation unchanged. They go through a process called meiosis when they divide to form gametes; this process mixes the genetic material between the genes. Genes can also be changed by external forces; some substances can cause alterations of the genes, as can radiation. These genetic changes can lead to developmental changes, which were not passed from their parents. Most cases of genetically caused hydrocephalus lead to several malformations, one, or more, of these will affect the nervous system.

In Hydrocephalic adults whom the skull bones have fused, the head size usually doesn't grow abnormally. The increased intracranial pressure can cause headaches, irritability, sleepiness, nausea or vomiting, visual problems, neck pain, seizures (rarely), or a change in behavior, personality or school performance. An inability to concentrate or remember things may also develop. Lethargy, drowsiness, balance problems, and double vision are common symptoms.


Detail information on Hydrocephalus, causes, treatment, history and surgical procedures can be found here

Need for Residential Home for Mentally Challenged in Mumbai City.

It is of deep concern for parents of mentally challenged to provide care for their children, specially when their children are adults and they are not there to take care of them. In the present scenario, the living is quite expensive, and it is becoming increasingly difficult to take care of their handicap-siblings. It would be of great help if some residential facilities could be made available to ease their living. Swami Brahmanand Pratishthan, centre for mentally challenged are willing to take up the project of building a residential home as soon as they are able to overcome the obstacles of collecting the funds.

Need for the project:

A need is felt at present for a spacious building which will accommodate more number of adult mentally challenged persons and for providing residential facilities with other support services.

At our present premises we are able to house only 50 adults that too without providing residential facilities which is a dire need of the Parents of Children with special needs. Such services are lacking in our area

We have successfully managed our projects in spite of various financial hurdles with the support of our parents, community and professionals.

We are hopeful of fulfilling the dream of providing and improving the quality of life to persons and their families with special needs.

Back Ground:

Mentally challenged children have little integration into our present society. Small initiatives for these children include, day schools specially catering to the challenged, when young, and in their school going years. But, as they grow older little opportunities remain in our society for any concrete measures for rehabilitation. The Trust is presently running a Vocational Training Unit (Falguni Vocational Centre) at Swami Brahmanand Pratishthan, Sector 8A, CBD.
The vocational center caters to persons with special needs who attend the Centre irrespective of their age. These mentally challenged adults find solace in coming to the center for special programs designed towards their rehabilitation into society.

Vision: (Goal)

An integrated family approach for rehabilitation of the mentally challenged adults in society using an enabling environment, advocacy, and rights based approach towards educational, social, financial, vocational and economic empowerment for those mentally challenged and their families under the umbrella of Swami Bramanand Prathistahan Society.

Mission: (Objectives)

1. Rehabilitation; for the mentally challenged, using an extended family approach. (Even after death of immediate parents and guardians)

2. Social, economic and vocational empowerment for those affected families.

3. Capacity building; for the mentally challenged to lead a normal integrated life in society.

4. Enabling environment through reduction of stigma and discrimination, early interventions, rights based approach and essential advocacy with the stake holders and gate keepers of society to include Government, Non government and private agencies.

Brief detailed Project report about the proposed project in Navi Mumbai.
Point 12 a/b: How the area of plot and admissible FSI will be utilized:
Major Activities and utilization of the land acquired by the society would be the following:

Residential Facilities for adult mentally challenged

• Sheltered Workshop

At the residential Unit there will be separate accommodation for male as well as female. Besides common facilities of Dining, Recreation and Health will be provided. The Residential staff will be provided with the required facilities.

At the Sheltered Workshop the inmates along with the non residential adult mentally- Challenged will be kept engaged in activities such as

• Handicraft
• Home science
• Grinding
• Stitching & embroidery
• Pottery
• Job Work on orders received
• Any Other job available at the Centre

This will also help them in becoming economically independent to some extent.

This facility will be made available to the adult mentally challenged above the age of 21. It will also benefit the general public as jobs will be made available at the Centre. The items produced at the centre would be sold to the public. People wanting to spend their free time can offer their voluntary services.

The inmates will be charged for the services on the cost incurred. A Subsidy will be given to deserving inmates. Expenses will also be met by way of donations, sponsorship etc

Financial Projections – capital and recurring cost.

The approximate cost on the Project would be as follows


PARTICULARS COST
Purchase of land – Rs. 40,00,000/- approx.
Other Expenses on acquisition - Rs. 5,00,000/-
Cost on Construction - Rs. 2,00,00,000/-
Furniture & equipments - Rs. 10,00,000/-
Miscellaneous -Rs. 5,00,000/-

Recurring cost on salaries, maintenance and other activities approximately amount to Rs. 12,00,000/- per annum.

The Trust and the Parent’s Association will raise funds for the plot while the cost on construction will be by way of funding agency.

Human resources to manage the project

Human Resources

Professionals will be appointed to take care of both the units and the parents will be actively involved in the supervision of the project.

The Falguni Vocational Centre presently has staff as follows
1 Vocational Coordinator
1 Vocational Instructor
1 Special Educator cum Craft Teacher
2 Class Assistant
3 Attendants

The recurring cost incurred on salaries and other expenses amount to Rs. 4,50,000/- annually.

History:

The Trust started its first Centre in the Shahabaz Village on 7th July 1990 with three students identified during the Survey. The classes were conducted in the Shahabaz vyam Mandir. This premise was allotted to the Trust on the recommendation of Sri. Ramesh Kumar the Social Welfare Officer of CIDCO. In spite of financial constraints the Trust was allotted a plot by CIDCO. Today Swami Brahmanand Pratishthan has a well equipped set up for the mentally challenged children in Navi Mumbai.

The Trust also started its second centre in the year 2000 at Uran. At present the activities are carried out at rental premises and catering to 30 mentally challenged children and a few young adults. This is the only Centre in the entire area of Uran. We also have plans to develop this centre in to a full fledged unit catering to the needs of the mentally challenged children/ adults and their families.

Achievements:

Our Institution and our students have won various awards and prizes. To mention a few in the year 1993 our student Mst. Sujit Phadnis represented India in the International Special Olympics held at Salzburg, Austria and won a gold medal for the country.

Ms. Disha Maru was the youngest participant in the National Music and dance festival held at Hyderabad organized by National Institute of the Mentally Handicapped (Ministry of Social Justice and Empowerment). She is also a National Swimmer and was selected as a standby for the Aquatic Event (Swimming) in the World Games 2003 organized by International Special Olympics to be held in Dublin, Ireland.

Ms. Lakshmi Shetty is also a National Table Tennis gold medalist and was selected to represent India as a standby in the World Summer Games in the International special Olympics to be held at Shanghai, China in the year 2007.

The School has won the Mayors Trophy in the sports organized by NMMC for special Children for three consecutive years. It has also received the Special Jury Award from Jawaharlal Nehru Port Trust in the year 2008 for a cultural program presented by the students.

The School has also received Seva Bhushan Puraskar for the services rendered in Navi Mumbai by the Congress Seva Dal of Navi Mumbai. Many students have excelled in sports, drawing, dance and music at district, state and National Level.

The Principal Mrs. Sukanya Venkataraman was awarded the ‘Adarsh Shikshak Puraskar’ by Thane Jilla Parishad, Thane.

The Founder Mrs. Shirish Poojary has also many awards and felicitations to her credit. To name a few the Vocational excellence award by Rotary Club of New Bombay Hillside given twice and Excellence Professional award on the occasion of the International women’s Day at the hands of Smt. Manda Mhatre.

The Organization it is able to provide quality education, training and all essential services to the Special children and their families of Navi Mumbai. This has been possible on account of the blessings of P.P. Swami Brahmanand along with the support and cooperation it has been receiving from the parents, well wishers and Community at large.

A plot measuring 881.20 square meters at Aaroli (Navi Mumbai) is available for residential home, if only……..

Using Behavioral Approaches in Autism (And on Anyone)

by Shannon Des Roches Rosa (Guest Post, Thank you- Shannon)


Behavioral methods are usually associated with autism and early intervention, or orca training.

But guess what? You can use them to change the behavior of almost anyone: your children, your partner, your co-workers, even icky blog or Twitter trolls.

I am a huge fan of behavioral methods because they have helped my son gain so many skills, but I also confess that I use the methods to mold behaviors whenever I can.

Let me tell you how you can play puppeteer, too.

All you have to do is ignore undesired behavior, and instead seek out, role model, and reinforce desired behavior. If your subject doesn't respond, then analyze their motivations, and appeal to those motivations instead using reinforcers (okay, bribes) if necessary, which you can taper off once the behavior becomes routine.

That's pretty much it. I know.

Behavioral methods are straightforward, but they're not instinctive unless you're the kind of naturally empathetic and kind person I tend to avoid because you make me feel like a jerk.

And implementing behavioral approaches systematically and consistently, especially in parenting, takes more effort than asking children to talk about what they were feeling when they hit their brother over the head with a lunchbox (though understanding that motivation is important, too).

It takes a lot more analysis and upfront effort to be proactively positive instead of impulsively negative, but the results are generally worth it because you're not reacting and reprimanding, you're planning and conditioning -- and conditioning sticks.

Behavioral methods aren't foolproof, but they usually work. Here are some examples:

• Instead of yelling at a kid who picks her nose, hand her a tissue, and tell her how proud you are when she blows her nose instead of excavating. Actively watch for opportunities to catch her doing the right thing, and praise her with gusto when it happens. If this approach doesn't work, up the ante with a sticker or other reward chart. If you still can't find any motivation strong enough to stop the nose-picking, then you need to decide if it's a critical battle, or if you should change your focus to "I'm proud of you when you don't pick your nose in public," and start reinforcing that behavior instead.

• Instead of chastising a co-worker who takes the last cup of coffee and leaves the carafe empty, ask them if they wouldn't mind refilling it, and be emphatic but not patronizing in thanking them when they do so. Repeat repeat repeat. (You might want to wait until after they've had their first sip of coffee.)

Behavioral methods form the cornerstone of ABA therapy, which is one of the most commonly used approaches to help children with autism and other special needs learn. it is a 1:1 -- one child, one therapist instructor -- intensive, data- and evidence- driven educational program for addressing a child's learning deficits. Whether it takes place at home, at school, or across both places, all the learning is tracked, and the resulting data scored and analyzed to see what kind of progress the child is making.

Many autistic children have difficulty learning from their environment or in traditional educational settings, because there are so many assumptions involved in each lesson.

How can a child learn to write the letter A if they don't understand how to hold a crayon, that you need to hold the paper with the other hand, or even that you're supposed to remain seated? These kids need their learning broken down into small steps, and bolstered by repetition. This is what ABA therapy does.

It is not the only way to help our kids with autism and other special needs learn, and it doesn't don't work for all kids with autism because there is no one type of kid with autism, just as there is no one type of gifted child or one type of Deaf child.

But ABA is worth trying, to see if your child responds. ABA therapy methods taught my son Leo to dress himself, play with other kids, ask for help, and occupy himself independently. He simply did not respond to other ways of learning when he was little.

Some critics protest that ABA therapy is too rigid, too intense, and uses aversives or negative consequences to shape behavior. While these practices were used in the early days of researchers like Ivar Lovaas, an ideal modern ABA program is customized for each child's skills sets and learning needs, and is flexible not only in what it teaches but in where the teaching takes place.

There should be no forty hours per week of sitting at a table doing boring drills. There should be no punishments, only praise and reinforcements. ABA therapy, like most credible learning systems, continues to evolve through evidence regarding best practices.

ABA therapy is also frequently downplayed by a media that prefers to sensationalize autism "cures" achieved through dietary supplements or questionable medical protocols or Martian rocks, but I guarantee you: most "cured" or "recovered" children, including Jenny McCarthy's, Karyn Seroussi's, and Age of Autism's had ABA therapy as well, and likely made much of their progress in that environment.

Many of Rethink Autism's learning tips are simple but not necessarily something I'd come up with on my own, an example being color-outlining the inside edges of separate color areas to encourage children to use more than one color per picture

Using a one-inch-thick boundary around the coloring area, and then gradually increasing the size and complexity of the white space while reducing the thickness of the outline. Coloring inside the lines is an ongoing challenge for Leo, but the Rethink Autism approach seems to be helping so far:

We are currently in a situation that is testing our and Leo's long-time ABA program supervisor Emma's behavioral chops: Leo has decided that he would prefer not to have a little sister. My son may have many challenges, but his memory is tremendous, and he remembers his years as Mommy's baby quite clearly. He has tolerated his sister for almost five years, and now feels it's time for the usurper to go. He has spent the last few months trying to hit, pushing, and terrorize her non-stop.

My husband and I have been trying to ignore Leo's behavior (when safe to do so), or keep the two of them separated and supervised. But Supervisor Emma pointed out that this is not a long-term approach; we are not addressing Leo's motivation, which is to make his sister miserable enough to leave. So we need to take his motivation away. We need to create as many safe positive interactions between Leo and his sister as possible, so that Leo starts to like his little sister, sees that there many benefits to having her around, and stops trying to remove her from the picture.
Cross your fingers for us; if Emma's approach works, it'll be one more victory for behavioral techniques.

Source: http://www.blogher.com/using-behavioral-approaches-autism-and-anyone

Microcephaly ~ Devang Chavan

When I went to his class, he was cleaning coriander leaves, slowly and carefully, observing each leaf as he cut off the edges and placed the leaves aside with the bunch of other leaves.



Devang Chavan is ten year old shy kid, who is very active and independent in all his personal skills. He can read and write simple text, good in functional mathematics and can perform simple task independently. He helps his mom at home by running few errands like buying grocery from a store, or helping at home.

He suffers from Microcephaly, which is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Microcephaly can be present at birth or it may develop in the first few years of life. It is most often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of fetal development. It is associated with Down’s syndrome, chromosomal syndromes, and neurometabolic syndromes.

Babies may also be born with microcephaly if, during pregnancy, their mother abused drugs or alcohol, became infected with German measles, or chicken pox virus, was exposed to certain toxic chemicals, or had untreated phenylketonuria (PKU).

Babies born with microcephaly will have a smaller than normal head that will fail to grow as they progress through infancy. Depending on the severity of the accompanying syndrome, children with microcephaly may have mental retardation, delayed motor functions and speech, facial distortions, dwarfism or short stature, hyperactivity, seizures, difficulties with coordination and balance, and other brain or neurological abnormalities. Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Devang was five years old when he was admitted to Swami Brahamanand School, centre for Mentally challenged. He was very restless and hyperactive. His speech was limited to few words. He had the history of prolong illness and had to be hospitalized several times for diarrhea, respiratory track infection and convulsions. His development milestones were delayed from birth.



Over the period of six years, he has shown marked improvement in behavior and is quite obedient and well mannered. He is shy and does not interact freely in the company of strangers. He takes active part in sports and extra curriculum activities and is being trained in pre-vocational skills.

Children, like Devang, will only have mild disability, especially if they are otherwise growing and developing normally, will have normal intelligence and continue to develop and meet regular age-appropriate milestones.

There is no treatment for microcephaly that can return a child’s head to a normal size or shape. Treatment focuses on ways to decrease the impact of the associated deformities and neurological disabilities. Children with microcephaly and developmental delays are usually evaluated by a pediatric neurologist and followed by a medical management team.

Early childhood intervention programs that involve physical, speech, and occupational therapists help to maximize abilities and minimize dysfunction. Medications are often used to control seizures, hyperactivity, and neuromuscular symptoms. Genetic counseling may help families understand the risk for microcephaly in subsequent pregnancies.

However, ‘The National Institute of Neurological Disorders and Stroke’ (NINDS) conducts research relating to microcephaly in its laboratories at the National Institutes of Health (NIH) and supports additional research through grants to major medical institutions across the country. A small group of researchers studying a rare neurometabolic syndrome (3-PGDH), which causes microcephaly, have successfully used amino acid replacement therapy to reduce and prevent seizures.


Source: http://www.ninds.nih.gov/

We grieve the death of ‘Eunice Kennedy Shriver’, the founder of Special Olympic. May the torch of love move on…..

“The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes and the community” wrote Eunice Kennedy Shriver in a hotel meeting room nearly 40 years ago..

Hundreds of mourners descended on Massachusetts on Friday (14Aug09) to pay their respects to ARNOLD SCHWARZENEGGER's mother-in-law EUNICE KENNEDY SHRIVER, who died earlier this week on 11th of August 2009.

Celebrities including Jon Bon Jovi, Stevie Wonder and TV titan Oprah Winfrey turned out for the funeral of the mental disability campaigner, as well as the actor-turned-California governor and his wife Maria Shriver,

The sister of former U.S. president John F. Kennedy passed away aged 88 after a short stint in hospital. Her health had dramatically deteriorated in recent years after a series of strokes.

To commemorate Shriver's role as the founder of the Special Olympics, disabled athletes lined the streets of Hyannis, Massachusetts with torches as her four sons carried the coffin to the Saint Francis Xavier Catholic church - the building where the Terminator star married Shriver's daughter Maria in 1986



Eunice Shriver, whose older sister Rosemary was mentally disabled, wanted every special needs child to have the best possible life, to live without fear. She wanted to change people's perceptions, wanted the world to understand the gifts and capabilities of this group she called "her special friends."

Coming from a family, the Kennedys, for whom sports were so important, she had a vision of the good that competition could bring to special needs kids. She took on a task that was Olympian and she turned it into something as grand as the Games in Athens, or Beijing, or Lillehammer.

She traveled the world to spread the word. She dived into pools, slapped mustard on sandwiches, hugged and hustled around the planet, showing the way for millions of families who were looking for a better quality of life for their challenged children.

One thousand athletes competed in the first Special Olympics World Games in Chicago in 1968. In Shanghai in 2007, there were 7,500. There now also is a World Winter Games.



From its modest beginnings, Special Olympics is in more than 180 countries and serves 3.1 million athletes. Special Olympics of Washington, incorporated in 1975, after a visit to the state from Shriver, serves 7,000 athletes.

"At a time when people were being told to put their special needs kids in a home," said Shelby's sister Lexie, a student at Western Washington, "Eunice Shriver was more than willing to say that, 'Yes, I have a sibling with special needs and I want to make her life better, rather than ignore the problem and pretend it isn't there.' I find that very, very inspiring."

Her son Timothy Shiver writes “My mother has always been about hope, love and opportunity. Love being the most important. For what do we have, if we do not have love? Hope for helping us through each day when life challenges us. And, opportunity that each one of us is empowered to create to make the world a better place. My mother believed in these things so strongly and they have played a major role in her life, especially, her work with people with intellectual disabilities.”

Shriver de-stigmatized disabilities. She gave Special Olympics athletes a transformative sense of accomplishment. She changed the world view of mental retardation.

“To this day, the mission of Special Olympics is rooted in the values of hope, love and opportunity. To create an opportunity for people with intellectual disabilities where they can compete, experience success and showcase their talents to the world. To create a community of hope and welcome for the athletes and their families where they can experience joy and acceptance. And, to let others share in the love and joy that comes from the athletes so openly and unencumbered. That is the essence of my mother's vision” says her son, Timothy Shiver.

May the torch of love move on and brighten the lives of differently abled children.

Source: http://seattletimes.nwsource.com/, http://www.contactmusic.com/, http://www.google.com

Down Syndrome Child

She is stubborn but she is smart, she knows how to get her things done, even if she has to boss over her friends (specially when her teacher is not looking.) She likes to be the centre of attraction and is a quick learner. On festive days, she will wear her frilly dress, fancy clips in her hair and even carry a matching purse. When she is in mood, she will help with cleaning the class, and tiding up the room and then give her sweetest smile. Kareena Rajput is 10 year old Down syndrome child, so very cute that you just cannot resist hugging her.

Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue.

Other characteristics of people who have Down syndrome are that the sinuses are not developed properly and this can cause the tear ducts to block and make them look like they are crying all the time.

Kids with Down syndrome have a wide range of abilities, and there's no way to tell at birth what they will be capable of as they grow up

Approximately half of all kids with Down syndrome also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself.

Vision problems commonly include amblyopia (lazy eye), near- or farsightedness, and an increased risk of cataracts.Regular evaluations by an audiologist and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills

Low muscle tone (called hypotonia) is also characteristic of children with Down syndrome, and babies in particular may seem especially "floppy." Though this can and often does improve over time, most children with Down syndrome typically reach developmental milestones — like sitting up, crawling, and walking — later than other kids.

At birth, kids with Down syndrome are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers.

For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.

Other medical conditions that may occur more frequently in kids with Down syndrome include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia.

Upper neck abnormalities are sometimes found and should be evaluated by a physician (these can be detected by cervical spine X-rays). Fortunately, many of these conditions are treatable.



(Kareena with her class mates, she loves painting)

Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically.

Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with Down syndrome

Although no one knows for sure why Down syndrome occurs and there's no way to prevent the chromosomal error that causes it, scientists do know that women age 35 and older have a significantly higher risk of having a child with the condition.

Down syndrome affects kids' ability to learn in different ways, but most have mild to moderate intellectual impairment.



Kids with Down syndrome can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace — which is why it's important not to compare a child with Down syndrome against typically developing siblings or even other children with the condition.

While some kids with Down syndrome have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with Down syndrome will have a congenital heart defect.

Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist.

Breast feeding is very important for all babies especially for children with Down's syndrome because Mother's milk offers better protection for the immune system than formula milk. and the immune system of children who has Downs syndrome is almost always suppressed.

A simple, risk-free blood test can detect Down syndrome from the blood of pregnant women

Researchers in Hong Kong have developed a way of identifying genetic markers, which show whether an unborn child has the chromosomal disorder, without relying on risky amniocentesis techniques. The most common prenatal test for Down syndrome involves amniocentesis or chorionic villus sampling (CVS) in which a sample of the fluid surrounding the foetus is collected and analyzed.

The procedure might carry one per cent risk of miscarriage. As a result, it is only usually carried out if there is a high enough risk of a disorder - in older mothers, for example.

Source:http://kidshealth.org/

Case study of an autistic child

Vinesh lives in his own world, playing with his fingers and shaking involuntarily, sometimes throwing temper tantrums and other times destroying what ever comes in his hand. I see him pull out cane-threads from the mat under him, joining it to make a long string and then stretching and pulling and rolling it over and over. His teacher asks him to stop fidgeting and he folds the string and stuffs it into his pocket, but only momentarily and then, he is again, unrolling the string and playing with it over and over again. He shows no interest in the class activities and will respond only when his instructor gives him a personal attention. His teacher says that he is very cooperative only when given 'one-to-one' attention and he is quite independent in his self care activities. He can paint, draw and perform pre-vocational skills. He is able to follow instructions and is able to ape the actions if given individual help, but for most part of the day, he is hyperactive and lives in a world of his own.

Vinesh is a case of an autistic child.

Autism is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior.

Autism is a complex lifelong developmental disorder, and has no cure, medical or therapeutic. However, through early intervention, many children have been able to lead productive and meaningful lives with support from their family, friends and professionals

Research indicates that giving early intervention in the form of specific and appropriate training methods that are tailored to your child's needs and learning style is the one way to help your child reach his/her maximum potential. Prior to this, it is important that a special educator take a detailed assessment of your child's strengths and difficulties to develop an individual education plan for your child. There are a number of intervention styles/methods, and you would want to choose that would benefit your child most.

Autism primarily affects the areas of communication, social skills, and thought and behaviour.


About a third to a half of individuals with autism do not develop enough natural speech to meet their daily communication needs. Differences in communication may be present from the first year of life, and may include delayed onset of babbling, unusual gestures, diminished responsiveness, and vocal patterns that are not synchronized with the caregiver. for example, they may look at a pointing hand instead of the pointed-at object and they consistently fail to point at objects in order to comment on or share an experience. Autistic children may have difficulty with imaginative play and with developing symbols into language.

Autistic individuals display many forms of repetitive or restricted behavior, such as:

Stereotypy is repetitive movement, such as hand flapping, making sounds, head rolling, or body rocking.

Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way.

Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.

Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.

Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program or toy.

Self-injury includes movements that injure or can injure the person, such as eye poking, skin picking, hand biting, and head banging.

For many children, autism symptoms improve with treatment and with age. Some children with autism grow up to lead normal or near-normal lives. Children, whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity. During adolescence, some children with autism may become depressed or experience behavioral problems. Parents of these children should be ready to adjust treatment for their child as needed.

For further support and help in managing autistic child, read the answer as many questions about autism, dealing with behaviors, and other issues raised by families in India HERE
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Case Study of Fragile X Syndrome

Nikhil is 22 years old, Fragile X Syndrome child. He is placed in the vocational group at Swami Brahmanand Prathisthan, Centre for Mentally Challenged.

When he first came to school in 1997, he was very aggressive and hyperactive. At home he was very restless and would roam around the house aimlessly for the greater part of the day. He was very stubborn and would throw temper tantrums if compelled to do some work. During the years of training in the school, he has shown marked improvement, he is more co-operative and shows more concentration in manual work. He cannot read and write and has severe speech problem but he is quite independent and is able to most of his personal jobs on his own.

Fragile X syndrome is the most common form of inherited intellectual impairment. Nearly one third of patients diagnosed with fragile X syndrome also have some degree of autism, and the mutation underlying fragile X syndrome is the most commonly known single gene cause of autism.

A change or mutation in a gene on the X chromosome causes the fragile X syndrome. Chromosomes are packages of genes that are passed from generation to generation. Most individuals have 46 chromosomes, two of which are sex chromosomes. In females, these are two X's; in males they are and X and Y. Genes are given names to identify them and the gene responsible for fragile X syndrome is called the FMR1 (fragile X mental retardation 1) gene. The mutation is in the DNA (the chemical that makes up genes), of the X chromosome. The gene appears in three forms that are defined by the number of repeats of a pattern of DNA called CGG repeats. Individuals with less than 60 CGG repeats have a normal gene. Individuals with 60-200 CGG repeats have a permutation which means they carry an unstable mutation which can expand in future generations. Individuals with over 200 repeats have a full mutation which causes fragile X syndrome. The full mutation causes the gene to shut down or methylate a region of the FMR -1 gene. Normally, the FMR-1 gene produces an important protein called FMRP. When the gene is turned off, the individual does not make fragile X mental retardation protein (FMRP).

The lack of this specific protein causes fragile X syndrome.

Children with Fragile X syndrome can be recognized by their typical physical features such as enlarged ears, long face with prominent chin, and large testicles (in post pubertal males). Connective tissue problems may include ear infections, mitral valve prolapsed, flat feet, double-jointed fingers, hyper flexible joints and a variety of skeletal problems.

Behavioral characteristics in males include attention deficit disorders, speech disturbances, hand biting, hand flapping, autistic behaviors, poor eye contact, and unusual responses to various touch, auditory or visual stimuli.

At this time, there is no cure for fragile X syndrome. However, special education, speech and language therapy, occupational therapy and behavioral therapies are helpful in addressing many of the behavioral, and cognitive issues in fragile X syndrome. In addition, medical intervention including medications can be helpful for aggression, anxiety, hyperactivity and poor attention span. Because the impact of fragile X is so varied, it is important to do a careful evaluation of the individuals' abilities and difficulties to tailor a treatment plan to address specific needs.

All persons with fragile X can make progress, given the proper education, therapy, and support.

Speech and language, behavior, cognitive development, sensory integration, gross motor development, and daily living are areas that often need to be addressed for someone with fragile X syndrome. While many of these areas require physical and behavioral intervention, medication is often an important component of the treatment.
Children with fragile X often have a variety of behavioral challenges. Behavioral challenges are one of the main areas listed on checklists for the identification of persons with fragile X syndrome. Intervention for difficulties with attention, anxiety, and interpersonal relations requires careful planning for both medication and behavior modification.

Parents and educators may need to devise behavioral plans to help children with fragile X to cope with everyday demands of home, school, and community. Poor eye contact, hand flapping, and lack of awareness of social cues may cause difficulties in peer interactions, making inclusive educational placements more of a challenge. ADHD may also impede academic progress.

Behavioral interventions, including calming techniques and modified environments, are important components of the IEP for children with fragile X. Clear, concrete plans, with appropriate cues (e.g. visual signals for quiet mouths) and appealing rewards (e.g. stickers which lead to prizes) are essential for early childhood and school age children. Older adolescents and adults may need specific behavioral plans in vocational training, so that they can function in the work setting in the most appropriate manner.

Many of the strategies used for children with ADHD who do not have fragile X syndrome are appropriate for those with fragile X. These include seating near the teacher and away from distractions, use of a private carrel at times, short tasks with the opportunity to move around often, visual cues for sequences of events, and interactive lessons, that do not always involve sitting and listening.

Transitions and changes in schedule are especially difficult for many persons with fragile X and require careful planning by teachers and parents. Pictured schedules on the board or on Velcro cards can be used to lay out the sequence of the day. Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. Some unusual circumstances (such as a loud assembly) may call for time in a quiet room, with calming items such as a beanbag chair and a videotape, rather than the scheduled event.

Intervention for inappropriate behavior should always be planned with awareness of issues relating to sensory processing. Strategies designed to help achieve behavioral goals should include attention to the environment (lights, noise levels, activity level, etc.) and awareness of the sensory overload levels of each particular child. See Intervention for Sensory Integration Disorders for more information in this area.

Social intervention may help decrease the risk of later social, educational, and psychological dysfunction. In the school setting, social stories can be used describe a behavior that needs to be changed, with appropriate solutions for the child or adult to try. Some children with fragile X may see the school social worker or counselor in order to set social or behavioral goals.
Activities in the community, such as going to restaurants and movies, and attending other crowded, unfamiliar places may pose challenges for families. Careful planning, beginning with descriptions at home of the activities and sequences that will happen can help the child or adult with fragile X to anticipate the situation. Visual cues, such as menus or church bulletins, can also help a parent explain what will happen in an upcoming event.

Medications may be necessary for attention deficit hyperactivity disorder (ADHD) and/or for anxiety or depression. Aggressive behaviors and violent outbursts, seen in some adolescents and adults with fragile X, can often be inhibited with the use of medication. Pediatric neurologists and therapists who are familiar with fragile X syndrome can evaluate and treat these symptoms with appropriate medication. Counseling and behavioral therapies often need to accompany medical intervention. For more information, see the Medication section.



Nikhil has shown marked improvement in our school. Over the years of training, Nikhil is now helpful to his mother in running of simple errands. At school, he is placed in vocational group and perform well in fine motor activities. He helps in making different articles for sale. During the month of July, he is the active student in making of beautiful friendship bands for the festival of ‘Rakhi’ - an Indian celebration of ‘Brother’s day’. He can be placed in a sheltered workshop.

Source: http://www.fragilex.org/

Case history of Dandy-Walker Syndrome Child~ Jaisal Bakshi

Jaisal Bakshi is ten year old Dandy-Walker Syndrome child. He was admitted in Swami Brahmanand Pratishthan, Centre for Mentally Challenged two years ago. During that time, his condition was quite severe. But, he has very loving family, who work very hard on his progress and they co-operate with the teachers at school in helping him cope with his problems. He has shown marked improvement during these two years, he has better coordination of muscle movements, is able to recognize and respond to insructions and loves Bollywood music.

Dandy-Walker syndrome (DWS) is a congenital (present at birth) brain malformation typically involving the fourth ventricle and the cerebellum. The disorder was first described in 1914 by W. Dandy and K. Blackfan and was designated as Dandy-Walker syndrome in 1954 by C. Benda, who also reported familial occurrence. DWS occurs in one out of every 25,000 live births.

The following characteristics have been seen in children with Dandy-Walker syndrome:

• Enlargement of the fourth ventricle
• Absence (partial or complete) of the cerebellar vermis (area between the two cerebral hemispheres)
• Cyst formation in the posterior fossa (internal base of the skull)
• Slow motor development in early infancy
• Progressive macrocrania (abnormally enlarged skull)
• Hydrocephalus
• Seizures
• Intracranial pressure in older children, causing irritability, vomiting, and convulsions
• Cerebellar dysfunction causing ataxia and nystagmus
• Bulging occiput (back of head)
• Cranial nerve dysfunction
• Abnormal breathing patterns
• Agenesis of the corpus callosum
• Malformations of the face, limbs, digits, and heart
• Cleft lip and palate
• Urinary structural abnormalities

The majority of individuals with DWS are diagnosed their first year of life as a result of the commonly associated hydrocephalus. However, the definitive diagnosis can be made by ultrasound, CT-scan, or MRI.

Treatment consists of treating the associated symptoms (i.e., anticonvulsants for those with seizures and the insertion of a shunt for those with hydrocephalus). Balance problems and spasticity may occur and warrant physical therapy. Occupational therapy may be helpful for those with poor fine motor control.

The syndrome can appear dramatically, or be totally asymptomatic. Therefore, the prognosis for normal intellectual development varies depending on the severity of the syndrome and associated malformations. Difficulties in learning occur in 35-70% of children with DWS. Statistics in the literature citing a high rate of mental retardation most likely reflect injury due to inadequate management of the associated hydrocephalus, something which is less likely to occur today than in the past. Many children with DWS can be mainstreamed at school. Pediatricians, pediatric neurologists, pediatric neurosurgeons, geneticists, physical therapists, and educational specialists may be required to systematically follow these children and work towards ensuring that the child is given the best opportunities to reach his or her full potential.

Source: http://www.specialchild.com/

A must-have hand book for parents

Wanting the ‘best’ and doing one’s utmost to facilitate that ‘best’ in our children, comes naturally to most parents. We stretch beyond the available resources-time, energy, finances, efforts etc. to provide an environment which would enable optimal growth in them. Our dreams for them are noble-we want them to be responsible, confident, intelligent, independent, creative, ethical and good.

The right dreams, passion for those dreams, sustained efforts commensurate to that passion is there in us parents, yet the results that we should have, are not. Despite all our industry we see our children struggling with- low self–esteem, anxiety, packed-schedules leading to burn-outs, stress, loneliness, boredom, obesity, depression, to name a few. We often find ourselves lost, exhausted and uncertain on the righteousness and efficacy of our parental efforts. Our parenting style comes from what we value; what we see around us; what influences us; how we were raised ourselves; others' opinions. Often we struggle, as new parents, with our own values versus the values of others. Consciously/unconsciously we get into the measurable achievement trap (grades, trophies, variety of extra-curricular etc.) where the ‘child’ becomes the product that we are developing rather than thinking, intelligent, whole with his/her unique desires talents and individuality.

Our instincts tell us that something is not right, yet what is, we do not know. Kids do not come with a manual and the jargon of work on parenting is often conflicting and polarized. We have all felt and still feel this lack- lack of proper understanding, knowledge and information on:

The child vis-à-vis himself/herself (child’s native interests, strengths and level)
The child vis-à-vis us (our expectations of/from him/her)
The child vis-à-vis the world

This book essentially addresses these three issues.

Some questions which I struggled with during the course of writing this book are:

►The Child

Is parenting about my child or about ME?

Unconsciously, our parenting is so loaded with our expectations of what we want from our children and what we think is right for them, that we disregard their native endowments, interests and strengths. Our knowledge of the child is also clouded with the overwhelming anxiety of the child vis-à-vis the world. The omnipresent fear, ‘will my child carve a successful and happy life in this fast-paced over-competitive global world’ influences and shapes most of our parenting strategies.
We forget that each child is endowed with unique qualities and the fundamental need to discover his/her place in "the world." But before he discovers his place, he has to discover himself. Each child has the inner desire to learn, grow, and become independent. And most importantly he has the right to his own bent. We need to trust that our children are following their individual timetable for development. Can we trust in the bigger picture even when we don't see it?


►Growth and learning

Is learning the result of teaching, or the logical outcome of curiosity, observation, experiments, mistakes and understanding of the learner?

We must provide a congenial environment for that learning to occur. Children are like sponges - absorbing all that surrounds them. We can provide them with the tools-materials, exposure, space, guidance, security and freedom in a loving, supportive and encouraging environment and hope that they reach their potential; we can’t reach it for them. A certain sense of humility and faith is required-humility that I can provide him the tools for success but not the success itself and faith that my child has his unique endowments which he will actualize at his own pace. My focus should be to help my child transform his/her natural curiosity and interest into a strong inner discipline and motivation. A question that I have often asked myself in this context is, ‘Am I going to let my child find his own level?’ Winston Churchill said, “Where my reason, imagination or interest were not engaged, I would not or I could not learn.”

As a conscious parent I must always strive to understand afresh:
How do I draw a line between:-

Freedom and guidance
Discipline and permissiveness
Space and control
Structured time and unstructured time
Independence and scrutiny
Being a guide and being a friend
Challenging and supporting

►Children as witnesses to our path

I am my child’s living example. What am I modeling?

If we do not model what we teach, then we are teaching something else.
I want my child to be persevering, am I so?
I want my child to be a good human, am I so?
I want my child to grow, am I growing-as a parent, individual, human?
My children are watching me make my way. Not about what I do, but how I do it. Not about my parenting style, but my personal style.
Says Joyce Maynard, “As much as we watch to see what our children do with their lives, they are watching us to see what we do with ours. I can't tell my children to reach for the sun. All I can do is reach for it, myself.”

This book is a compilation of:

►My experiences

I am a mother of two girls and we often had open discussions and debates; question/answer sessions; introspection sessions; experiments in handling issues such as anger, fear, failure, relationships, education, learning, absorbing, etc. My children struggle with me almost as much as I struggle with them.

►Research

Research- from books, journals, magazines, Universities, Institutions, etc. dealing in child psychology, philosophy, behavioural sciences, pedagogy, strategies, attitudes which work etc.

►Interviews

Of childhoods which have worked-I interviewed people we look upon to, from all walks of life. I went behind their passions and challenges, their everyday life experiences and influences which have shaped and chiseled them to what they are. Some names are Kumar Mangalam Birla, Jaya Bachchan, Sachin Tendulkar, Jogen Chowdhary, Mrinal Sen, Hemant Trivedi, Kiran Bedi, Javed Akhtar, Shreya Ghoshal, Jonny Lever, Pandit Jasraj, Harsh Neotia, Anup Jalota, Jatin Das, Darshana Zhaveri, Tanuja Chandra and Sanjeev Kapoor.

I interviewed ordinary parents-neighbours, friends, colleagues for their experiences which made for insightful learning.

I interviewed about 500 children aged between 5 and 12 to know what really goes on in their thinking minds and their magical world.

This book deals with:

Attitudes that we want to develop in our children
Love of learning
An open mind
Optimism
Diligence
Perseverance
Responsibility
Courage
Confidence
Sensitivity
Sense of humour

Ethical values that we want to inculcate in our children

Honesty
Empathy
Humility
Respectfulness
Kindness
Generosity


Gifts that we need to give them

Freedom
Imagination
Creativity
Personal expression
Security
Love

There is no one right way, but there is a right direction-which is to keep in tandem with the child’s natural self, if we can do this in a loving and respectful manner, we will have done enough. As Osho said, “Everybody is trying to make you somebody else, whom you cannot become. You can only become yourself, or you can miss becoming.”

Lastly as parents the healthiest thing we can do both for ourselves and our children is to grant ourselves the freedom of a few mistakes which we will inevitably make along the way. For a planned parenting strategy however detailed, falls short in many real situations. Besides children are resilient – we will not lose them through a few mistakes.

Panel Discussion On "Working With Parents"

National Institute for the mentally handicapped (NIMH) RC (Regional Centre), Navi Mumbai is involved in the human resource development. As a part of their activity they conduct CRE- (continuing rehabilitation education) for professionals working in the field of disability.

‘Capacity Building’ in NGO’s was the subject for the CRE that was organized from 2nd Feb to 6th Feb.2009 One of the topics discussed in the CRE was ‘Working with parents’.

A Panel Discussion was held on the 4th Feb at NIMH. Mrs. Dipti Bakshi, Mrs. Nirmala Mohandoss, Mrs. Anika Gurung and Mrs. Laveena Birani and all the parents of special students of Swami Brahmnand Pratishthan were the panel members.

The panel discussion began with a formal round of introduction of the panel members and the participants. The main objective of the discussion was to project parent’s perspectives towards the grievances expressed by the professionals working with the special children.

The participants were asked to write down about the challenges faced by them while working with parents. These queries were then handed over to Mrs. Sukanya Venkataraman who was the moderator at the panel discussion.

The panelists answered all the queries of the participants. Following are the questions asked:

· Why parents don’t send students to School?
· Do parents give more attention to their normal kids? Do they differentiate between their special kids and normal kids?
· Can special children learn?
· Parents do not follow up the program planned by the special educator and give little attention to their home work.
· Parents don’t attend meetings and even if they do attend only mothers attend and Fathers never attend meetings .Why?
· Why do parents lay more stress on Academics and show little interest towards extra curricular activities?
· How do parents handle the behavioral problems of their children?
· Do they expect guidance form professionals with respect to sexual problems of their children?
· What effect does the birth of a special child have on the family members? How does the society, neighbors and relatives interact with the special child?
· How do you involve the siblings in the development of your special child?
· When both parents are working they are not able to carry out certain activities and this hampers the child’s development. Teachers feel that they too have 12 children in their class and hence are not able to attend to the child individually. What is the responsibility of the parents here?
· Do the parent pressurize the teachers because they are worried about their children or is there any other reason?
· Even though the child has reached the age of 18 parents still feel that their child should learn academics. What is their opinion about vocational training? What assistance do they expect from the Institution? How will they contribute towards this?
· What do parents think about the future of their child?
· What do you think of special schools in a rural set up?
· Are parents aware of the Govt. facilities and do they avail of these benefits?
· Sometimes parents use their special child for their own benefit.
· Why do parents give more importance to speech therapy rather than to the special education?
· Is it true that parents do not want to spend more time or money on their special child?
· What do parents think about the money they spend on their ward even when they know that their child will always be dependent on them?
· How should parents ensure the financial security of their child?
· Can parents freely suggest any changes in the program or the activities to the teachers?
· Are the parent’s suggestions accepted by the teachers?
· Are you able to discuss your child’s problems and achievements with the teachers?
· How can parents be motivated to participate in the school activities and functions?
· What are your expectations from the teacher and the Institution?


Parents Feedback received during discussion

Home is the first school and parents become the first teachers. Both home and the school should work together. Parents and teachers can work together as both possess skills and knowledge. Both have certain insights in to the child. Sharing of information about the child could solve many problems. This sends a message to the child that we are all in it together.

Parents being parents are very attached and affectionate towards their child hence they worry about their child.

Both parents and teachers want what is best for the child but somewhere the message gets lost due to lack of time, lack of transparency and due to lack of communication. Once these barriers are broken this gap between the two can bridged.

We need to work as a team. Both parents and teachers should appreciate each other’s efforts.
Many problems arise due various problems like lack of proper guidance from doctors, paucity of knowledge regarding disabilities, poor awareness on the part of parents and many other reasons. If the child’s program and the activities are explained to the parents before starting the program they become the effective partners who work along with the teacher.
Parents need to have more knowledge about their children. Sharing of knowledge through workshops and seminars will help parents gain knowledge and awareness.

Parents involvement is very important – this indirectly helps the child. Their involvement results in improved achievement, improved behavior and improved confidence of the child. The child also will start coming regularly to the school.

Meetings are held by teachers but most often mothers only attend the meetings. Fathers also want to attend meetings . They may not be able to attend for many reasons – their job commitments could be one of the reasons. In the Indian setup it is always the mother who takes care of the children so naturally it is the mother who also does all the interaction with the teacher. But mothers negligence will affect the child’s development.
Fathers can be motivated to participate in the school activities by giving them specific responsibilities.
Parents become good volunteers – the schools can make use of the expertise of parents and get them involved in the school activities. Once they get involved they start enjoying it .
Good parent teacher communication is required for the child’s progress. The relationship between the two is dynamic. What one does affects the other and in between it is the child who gets affected.
The attitude of the teacher is also of utmost importance as sometimes their way of talking may hurt parents. Often we focus on wrong things and so fail to take advantage of the influence they have together.
When parents and teachers make a mutual commitment to the best interest of the child the child feels supported and feels motivated to learn.
We need to form a strong and healthy foundation for the child.
Siblings can be encouraged to participate in the school activities . this helps in helping the sibling to accept the special child and also helps the child to adjust well with the situation.

Teachers need to be understanding towards the emotional state of the parents. Parents should be made comfortable in the initial stage to help them overcome their grievance and accept their child’s condition. Only then a good rapport can be built between the teacher and the parents.
Parents can also support other parents. Teachers should identify parents who have accepted and adjusted well with their child and school activities and take their help in working with other parents.
Parents suggestions should be accepted and respected by teachers and they must not take this as interference by parents.
Parents do need the help of the professionals in handling certain behavior problems, and sexual problems of the children.
Group counseling will also help the parents in overcoming their problems. Parents also need to be trained so training programs for the parents should be arranged by the school.
Many parents are not aware of the Govt. facilities, so awareness programs by professionals will the parents understand the rights of their child.
Teachers should consider parents as partners not as opponents .