Mother is Our First Teacher | Mother’s Day Special from Tamahar

‘Home is the first school and mother is the first teacher’, and most of us have experienced the love behind all this kind of teaching (sometimes army style), smiles behind tears, and the joy when we succeed.

2020 affected everything drastically in ways we had not experienced before. Schools were closed and all classroom sessions were stopped. Children missed socialising the most. Like all other institutions, Tamahar had to stop the classroom sessions too and start online classes, something we had not dreamt about. Online interventions for children with developmental delays, whoever has heard about it… We were unhappy, disappointed and clueless.

Never in our wildest imagination did we expect the spectacular change it brought about. With the help of the mothers of our special children who became hands-on interventionists at home during the online sessions, we could run our programs as effectively as before.

This Mother’s Day, we at Tamahar would like to congratulate all the mothers who have been supporting us and helping us to help them and their children during this pandemic. A special thanks also to our interventionists who have had to train themselves to work online, observe the children, give suggestions, demonstrate activities, all with a smile; sometimes on the small screen of their cell phones, some of whom were learning to operate these gadgets for the first time, some from underprivileged backgrounds, and some who are mothers of children with special needs too.

We wish all the mothers out there a ‘Happy Mother’s Day’; thank you for your unconditional support and love.

On this occasion, we would like to run a campaign, #MotherIsOurFirstTeacher to extend our support to our team who are working tirelessly day and night to help these children with special needs and their families and to the mothers who are helping us to help them during this pandemic.

To know more about our work, please visit www.tamahar.org.

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The Invisible Women

When I met Sunitha* in 2012, she was sad, with suicidal thoughts. She had centered her life around her child who had a severe disability and she was made to believe she was responsible for the state of her child, and the child was her responsibility, and so she had to push herself more and try harder, to make her child “normal”. It took 8 long years of constant support and counselling for her to accept the child without wanting to normalize things, to accept help from others, and to let go of the things that couldn’t be changed. Sadly, she is not alone in this situation and from my experience I can say this is the story of the majority of women who function as informal caregivers for their children with disabilities.

For those of us working in the disability sector, this is a common experience. It is a documented fact that intersection of gender and disability can be lethal and women with disability have worse outcomes. In all of our efforts, we tend to highlight how disability has a different impact on women and girls. However, missing in these dialogues are the other women, the invisible women, who silently care for their children with disabilities. 

Picture Credits Pixabay

There is a vast body of literature on every aspect of motherhood. What I would like to mention is how the situation of mothers becomes even more complicated in the Indian context, made worse by the prevailing gender order. Despite all our efforts, the society refuses to learn about our actual experiences as mothers and to separate the mother from the woman. An ideal of motherhood gets thrust upon us and we are often forced to live up to it. Take this dogmatic view of motherhood and combine it with the twisted and widely held belief that a disability is somehow a defect, and more so the result of something the mother has done during pregnancy, which is often detrimental to the health of a mother caring for her child with a disability.

In my 30 years of working in this sector, I have been  with many women who have children with disabilities. Their resilience is compelling, yet their despair is also heartbreaking. When I sat down and tried to put together all of their challenges and struggles, a common theme emerged: that of blame. The blame placed on her by the society and often by members of her own family for the disability of her child. These women then go on to internalise the blame and toil away their lives to correct it.They are hurt, disappointed, and the feelings of inadequacy are amplified when the world sees their child as different. They refuse to see themselves as individuals and their future is invariably entangled with that of their child’s. Most mothers I meet are repressed and refuse to believe they even deserve to be happy. Their personality vanished and their life a blur. Their road to recovery is a long one, the first step is to make them see themselves as distinct human beings with their own needs and wants. 

It may seem like I have overlooked the other half of parenthood, namely the father. They are as important as the mother when it comes to caring for a child with disabilities but that’s a conversation reserved for another day. On this day for global celebration of women, I would like to bring to the fore the personhood of these women, the silent caregivers. I want to remind them that they do not owe it to the society to exist as saviours, paragons of motherhood, as inspirational stories, as beacons of hope and sacrifice, I want to remind them that they can just simply exist.

*Name Changed

About the Author:

Vaishali Pai – Founder & Director at Tamahar Trust, Malleswaram, Bengaluru

An Occupational Therapist (OT) by profession and a Gold medallist in Bachelor’s and Master’s degree with three decades experience working with big names like Spastics Society of India, Mallya Hospital, Vydehi Institute of Rehabilitation and Align Centre. Vaishali has worked in child and adult rehabilitation in varied situations and facilities throughout her career. As a certified Early Interventionist, she is adept at handling infants and newborns, even as young as 1 week old.  She has served as the Chair of ORDI Organization for Rare Diseases India Care Coordination Committee, member of the Board of B D Tatti Annavaru Memorial Trust of Laxmeshwar, Dist. Gadag, on the board of APD – Association of People with Disability, a 60 year organisation working for disability, and also on the board of Disability NGO Alliance, a consortium of disability NGOs in the state of Karnataka. She is also the Civil Society member of an Ethics Committee of a medical research institute.

Contact:

Manisha Raghunath

Communications Manager – Tamahar Trust

Email: manisha@tamahar.org

Tamahar Trust – Penning Down Our Journey of the Last 11 Years

An idea is a seed that first happens before any action. It took me some years to make my dream come true. And this is exactly how the seed of Tamahar was sown. ~Mrs. Vaishali Pai, Founder-Director, Tamahar Trust

Our Founder-Director Mrs Vaishali Pai

We completed 11 years this year, in January, just before the pandemic hit the world, we celebrated our 10 years, Dashanjali, a celebration of ten years of hard work, persistence, learning, and a never-give-up attitude. It was also an occasion for us to recognize the relations we’ve built over the years and an opportunity for us to forge new bonds as we grow our Tamahar family. As we have begun our 12th year of working toward a better life for children with special needs and their families, we’re going on a small flashback to our humble beginning.

Our journey began in the year 2009 with just 1 program having 4 children, 1 employee, Tripti BG, and 1 friend, Sree Rao, who was hell-bent to help our Founder-Director, Mrs. Vaishali Pai succeed.

Our first employee and now, the COO of Tamahar Trust, Mrs. Tripti BG

From then to now, we’ve grown organically, through word of mouth and referrals. At 45+ employees across programs and operations teams, we stand strong as a family committed to ensuring the best for our children.

A session in progress at Tamahar Trust

A mission to empower as many children with special needs and their families as humanly possible.

Our staff who are our life force

This we do through our strong workforce – a group of almost all-women whom we hired simply because they had in them, the passion to learn and contribute meaningfully while carving a better future for themselves. So, apart from formally qualified professionals especially in physiotherapy, occupational therapy, and mental health spaces, we also employed women who had a high emotional quotient which held an extremely important place for us, over and above their formal educational qualifications. We were also looking for those women who were passionate about creating a better future for themselves and their families, had within them, an immense love for children, and caring nature. This we say with pride, we have managed to skill women who would have otherwise continued to do unskilled jobs and created job opportunities improving the lives of at least 40 families.

We have not restricted our training to just our staff but have ventured into awareness and advocacy programs as well. Mrs. Vaishali Pai and our COO Mrs. Tripti BG have taken the building blocks of the programs at Tamahar to various parts of the state as well as a few programs in other parts of the country. This has helped us train more individuals and organizations in the areas of special needs and disabilities.

Our children’s families are an integral part of our programs at Tamahar

As more children came in, the number of programs increased and we began services for parents as well, recognizing their individual needs separate from their child and the needs of the family to understand the child. In time, we found passionate partners to provide various therapies to our children and parents too. We think the best thing we did with Tamahar was that we never stopped searching for more, for better. We have always strived for excellence, to be the best service provider possible for our beneficiaries, never afraid to take risks, sometimes when we were not sure where the next salaries would come from.

We are proud to say that Tamahar has come to be a nurturer not just for families, but for the employees too. Learning is in our DNA and each one of us is striving to be better in our individual way, and it all boils down to one thing – how can I help my children and parents better? They are at the core and WE are BECAUSE of them and FOR them! The road ahead is filled with more opportunities to make a difference.

After having taken the last year slow for a moment and basking in the warmth and success of the decade gone by, we catch our breath, and right after, we charge ahead, not letting COVID-19 dampen our spirits. There is much to be done. Bridging the demand-supply gap by creating more resources and contributing to the collective knowledge of the sector through research and training, creating more service opportunities.

“There are miles to go before I sleep, there are miles to go before I sleep.”

Know More – https://tamahartrustblog.wordpress.com/2017/03/13/empowered-families-encourage-better-development-in-the-child/

Growing from Role to Role – Teacher Aid to Assistant Therapist

Mrs Gowri engaging with the Tamahar children during a park visit

For most people, transitioning into a new role is a period of mixed feelings – of excitement and nervousness. However, it is a different feeling altogether if you are changing entire verticals within the same organization. Here is one such story of an individual who has broken barriers of language and education to move from the role of Teacher Aid to Assistant Therapist under the Physiotherapy/Occupational Therapy team of Tamahar.

We had a little chat with Mrs Gowri to understand her journey thus far and the various aspects of her work life that have had a positive effect on her personality and personal life. 

Gowri’s journey at Tamahar started off in the year 2010 when a friend of hers let her know about a possible vacancy for the role of a Teacher Aid at Tamahar. Thus began her ongoing journey which has lasted 9 years and counting. Over these years, she has proactively picked up skills and tips from everyone around her, covering aspects of not just her professional life but also soft skills, communication skills, and others relevant to her life as a whole.

Assistant Therapist, Mrs Gowri during one of the physiotherapy sessions at Tamahar

She says, she has learnt a lot about therapy and handling children from our founder-director, Mrs Vaishali Pai and our COO, Ms Tripti BG. Apart from this, Mrs Gowri has also learnt the art of handling people, the right way to communicate with others, the dos and don’ts of working with children, and a lot more! Having come across children and families from various backgrounds, Mrs Gowri says she has been exposed to a wide range of medical conditions. This helps her understand the specific requirements of each of these children who have Physiotherapy/Occupational Therapy sessions and help the therapists accordingly. Apart from this, she has always shared a great equation with the children! One glance at the way the children hug her in the same manner they would hug their grandmother or aunt is proof of how much she is adored by our kids. They listen to her and she is like a mother hen to all children and even staff!

While Mrs Gowri has been lauded for her work earlier, she didn’t let it affect her work to the extent of making her complacent. Instead, she kept working towards improving herself and this helped maintain the quality of her work. Eventually, she was promoted to the role of Assistant Therapist. Overall, Mrs Gowri feels she has had a fulfilling professional life and hopes to learn even more in the coming years! We wish her all the best for everything she does currently at Tamahar and everything she aspires to do in the future!

Assistant Therapist, Mrs Gowri with the Occupational Therapist and Physiotherapist at Tamahar

Six Learnings from 30 Years of Working in the Disability Sector

I have been around in the disability sector in some form or the other for about 3 decades now, and yet, when I am asked to talk about it, I never know where to start. There is just so much going on in the sector at every conceivable level that the “relevant” bits get lost. For me, it is all equally important and it is all necessary to know, if you want to understand the sector at all.

When it comes to childhood disability specifically, India is in a critical state. This section of society  is under-represented, largely ignored, misunderstood and mistreated. Even when they become part of the bigger narrative, the point under discussion is the nomenclature – do we call them disabled or differently-abled? Brain damaged or special? The conversations that will actually make a difference to them happen behind closed doors – so what if the child is not normal? What about his/her right to a good life, an education and employment? What is the right curriculum or treatment for them? Who will govern the standards of working with these children?

A report by the World Health Organisation states that out of every 100 children in India, 1 or 2 have special needs. Considering the population of India, this comes to a whopping 12 million children, which does not include the unreported or undiagnosed cases, children with rare diseases, autism, and so on. When you come down the socioeconomic ladder, the numbers are scarier.  It’s a known fact that the likelihood of disability is higher in the poorer strata of the society. Going by the 2001 census, of the 9.4 lakh disabled individuals in Karnataka, 6.7 lakh of them reside in villages.

Having said this, I have been extremely fortunate for having been given a chance to work and learn in this sector. Some of my learnings are as mentioned below.

Dismal state of infrastructure and amenities

Although there are millions of children with special needs in India alone, there are very few centers which cater to children with developmental delays and especially for those in need of early intervention programs. This makes it difficult for parents to make equal opportunities accessible for these children. Especially, in backward areas, due to lack of sufficient right resources, this becomes even more difficult. Secluded therapies and services make logistics and holistic treatment difficult. There was no single place which would provide all services.  Even if there are few special education centers, not many people know about them.

There is no single standard solution or therapy

With a multitude of symptoms constituting the indicators of developmental delays, there cannot be a ‘One Size Fits All’ solution or therapy to treat children with special needs. In addition to developmental delays, children with special needs can also have a combination of other medical conditions and when there are thousands of disorders that a person can get, a generic approach definitely cannot work.

Families of children with special needs are neglected

There is no respite for the overburdened parents, especially the mothers, being the one responsible for taking care of the child 24×7. Parents and families of these children with special needs are hardly provided any kind of support at the social, emotional, and financial levels.

The sector does not realise the importance of providing families as much training and support as the child needs. When families are trained to understand the condition of the children, they can support them better.

Selective blindness towards disability issues

The concept of pitying the differently-abled has been a part of the fabric of the Indian society since eternity. So, there is considerable hesitation when it comes to interacting and mingling freely with these individuals. In the process, the individuals and their families often end up being isolated by society and therefore face a lot of stigma on a daily basis.

In addition to the social stigma, families also have to deal with financing the medical treatments and therapy sessions. This can be mitigated to a certain extent by availing the financial schemes made available by the government. There are other, non-financial resources as well, provided by the government. However, the awareness levels of this is quite low among the families.

Apart from the above mentioned points, there is insufficient human resource who can be trained to work as special educators. Additionally, the absence of a central data repository makes it difficult for organisations working in the disability sector to reach out to those in need.

Denial is a bigger problem than awareness

In cases of brain damage or mental disorders, symptoms are quite ambiguous and hence brushed off as general misconduct of children. Parents find it difficult to accept the fact that their child is differently abled or has special needs. This could be attributed to the huge stigma associated with the term disability. The first step would be to work towards decreasing the stigma and encouraging more conversations and support groups.  There is an entire generation of lost children – an entire section of population hidden in hearts of the parents who deny their condition and in the mind of the society which rejects it.”

Inclusion is a two-way street

It is the responsibility of the disability sector to create awareness among society about ways in which differently abled individuals can be integrated into the mainstream community. At the same time, it is essential to prepare these individuals to be capable of being a part of the mainstream society. This way, both sections of society work towards bringing about inclusion in as many aspects of daily life as possible. Eventually, the end goal of inclusion should be to empower the differently abled and help them aspire for a life where they are treated at par with the rest of the community.

Tamahar works towards bridging this gap and helping individuals with special needs become a part of the mainstream society. To bridge this divide is my dream for Tamahar. That I help my children come halfway and I help the society meet them in the middle. Help them meet halfway.

Vaishali Pai

Lalith’s story: Raising two children with Sanfilippo

Lalith is a father of two children with Sanfilippo syndrome, both enrolled at Tamahar. Below is one of his blog posts, where he shares his family’s story and his hopes for the future of research.

Sanfilippo syndrome (MPS III) has become a way of life for me and my wife. As parents of two children with this deadly disease, our time is spent in a mixture of living life to it’s fullest and at the same time being very anxious for any signs of regression.

We have a daughter who will be 10 years old in a couple of weeks and a son who is seven years old. My daughter’s birth and the subsequent years were sheer bliss. Things only became concerning when we noticed that her verbal capabilities did not pick up. Visits to various doctors yielded a common answer and it was that she had ADHD (attention deficit hyperactivity disorder). We were assured that a few different therapies would mean she would be fine. But that was not to be. At this point in time our son was born. We were completely ignorant of what my daughter had and had no way to know that the same condition would also affect our son.

Even being in a city like Bangalore, India, that prides itself in being technically advanced and providing access to the best healthcare, it still took a few years for us to arrive at a diagnosis. My daughter was six years old when the Sanfilippo syndrome diagnosis was confirmed. Life suddenly looked different. I can still picture us literally praying for a miracle while the rest of the world seemed to be nonchalantly proceeding ahead as they were blessed with a normal life. The fact that there is no medicine to cure them was made even worse when we were told that their quality of life would deteriorate. There was no choice but to push ourselves out of this attitude of feeling victimized and to instead look towards hope.

I started reaching out to organisations working for kids and caregivers affected by rare diseases. The Organisation for Rare Diseases India (ORDI) is playing a big role here. Knowing that there is an organisation fighting for the cause is reassuring. Similarly there is a special school called Tamahar where my kids were admitted and they have been a source of immense support.

Encouraging news from research companies like Abeona Therapeutics and Lysogene has given us hope. But when we see our kids crying or laughing for a reason we cannot figure out, see them running and suddenly fall down, or see them looking up to us with a pale face when they are hungry as they cannot verbally convey it to us; our hearts sink. We just cannot wait for a treatment that can cure my children and change the lives of our entire family.

I look to the Sanfilippo research community to enable me in getting access to the treatment in form of gene therapy for my kids. As a never-say-die parent, I make myself completely available to anyone who can help me in this endeavor and look towards all of you for your support.

Original post : https://raremark.com/sanfilippo-syndrome-mps-iii/articles/laliths-story-raising-two-children-with-sanfilippo–537

Sustainability is not eco-friendly products, but a way of life.

Did you know that it takes 200 litres of water to make one 50ml disposable paper cup?

Did you know that the long hot showers you enjoy use about 20-22(or more) litres of water per minute?

Did you know that simply by the virtue of eating in a big plate, we end up taking more food than we intend to eat and end up wasting food?

We did not, really. Then we met Mr Niranjan Khatri, who dropped by at our centre for a talk. What started off as a session on sustainable living turned into a dialogue on water conservation, mindful living and eco-friendly lifestyle, with quite a few amusing tidbits of facts and anecdotes thrown in. He also taught us the Inclusive Applause, a thoughtful practice that considers as well as includes hearing and speech impaired individuals!

Mr Khatri is the Founder and Principal Consultant at iSambhav, a sustainable development training organization that enables people to optimize their lifestyle and processes by teaching them eco-friendly practices and providing tools to do the same. Check out their website here.

In a style reminiscent of the 90’s phenomenon “Potli Baba”, Mr Khatri pulled out one story after the other from his own vast experience, while we sat there, spellbound and listening like curious little children. It’s really difficult to put all of them together in the same basket and call it one article, so we’re just gonna list it all out for you.

Water Conservation

Although there many large-scale operations to conserve water, most of us do not make any effort to save water in our day-to-day lives. It might be because we don’t know how to, or maybe because we don’t care. The way drinkable water is drying up and the amount of wastage, it is very probable that the next war be fought for control of water!

There are regions in Rajasthan which get 200 mm of rain annually. The water is collected in small, shallow wells with a pipe installed in the middle. Over days, the morning dew settled on this pipe eventually trickles down and collects in the well. This water is then rationed to the villagers, 1 litre for every person. (Btw, that is how much we use every time we wash our hands under a running faucet). If you ever visit these villagers, you will be offered a glass of camel milk, since that is available in abundance. A family’s stored water is their wealth and is treated like it. The water containers are locked in a safe and opened only for VIPs, and offered in very small portions.

Similar practices are followed in South Andes regions where rainfall is just as scarce. A vertical net is erected with an open drain pipe below it. The dew accumulated in the net falls into the pipe, which leads it to a community tank. This water is then supplied to the community for drinking and cooking.

We had our bit of controversial dialogue when the talk turned to water pollution on the account of religious practices. A lot of us throw idols, offerings, flowers, food (*cough* dead bodies *cough*) in our rivers and lakes. Spelling out the obvious, it is very, very bad for the environment and in turn, for us. Traditions are tied to faith, not practices and by modifying the latter to make them less damaging, we are only protecting the planet we call our Mother. Don’t follow the mandate blindly. Question the real purpose behind it all and follow your belief without damaging your own surroundings.

The Rs 50 study table

“On many of my trips to the far-flung villages, i noticed that the schools did not have tables/desks for the children”, recalls Mr Khatri. “Children kept their books on the ground and hunched over it to write, back completely bent over the book. It is unimaginable how uncomfortable that would be and what damage that would do to a child’s posture in the long term.”

He came back with a strong urge to do something about it. Wooden tables/desks would be out of questions since the schools would have neither the budget nor the space for them. What could possibly be as strong as wood and as cheap as plastic?

Amazingly, the answer came from nature itself.  In partnership with bangalore based eco solutions firm Vaspar, iSambhav created a sturdy, compact and portable little desk made entirely out of cardboard and based on the honeycomb design beehives! It is incredibly lightweight and folds into a regular register-shape, so easy to store and carry! When opened, it becomes a desk one can keep on his/her lap. It is strong as hell – It can withstand a weight of upto 80-90 kgs without any damage. Best part is, it only costs Rs 50! Here’s how it looks. In case you want to order some, you can reach out to Mr Arun at Vaspar on 9900029721.

 

Solar Cookers

The highlight of the day was, making DIY solar cookers! Made from simple raw materials, easily available in and around our homes, the cooker can be as good as an LPG stove on a sunny day. We made one during the session and cooked delicious maggi too! It is incredibly simple to make and is a boon for families who cannot afford LPG.  Learn here how to make one and pass on the manual to someone who might need it.

The little things we can do

Tiny changes in our lifestyle can go a long way in improving our ecosystem and maybe even elongating mankind’s life on this planet.

Here are some you must try –

1. When you have guests over, don’t offer full glasses of water which will eventually go to waste. Ask them how much they want.
2. Maybe cut down on the introspection under the running shower? Bathing under a shower for 30 mins is surely relaxing for us. But think about this when you do that – Rajasthan. 1 litre per person. Water in a vault. Yeah. Turn that shower off.
3. We have a habit of washing utensils under a running faucet. A lot of water can be saved if we just made the effort of turning the tap off every few seconds.
4. When visiting your native village, take solar cookers as gifts for the family or the VASPAR desks as gifts for their children. They sure will last longer than clothes and will be be much more useful than jewelry.
5. This diwali, give away new solar cookers and cardboard desks to your maids/society staff along with your old clothes.
6. Don’t use disposable cups/plates made of paper. It takes 200-250 litre to make EACH one of those. Carry a plastic/steel bottle with you. For gatherings, keep plastic glasses. (Hire someone for washing. Create a job for the economy. :p)
7. Don’t throw away something that is still usable. Give it to someone who needs it. to quote Mr Khatri – “Use something till you are happy with it. Then give it to someone who will be happy with it.”
8. Next time your are at a wedding, eyeing the sumptuous feast, or out for a buffet lunch, eat for your stomach and not for the eyes. In our excitement of a good meal, we take more than we intend to eat. Taking smaller portions will reduce food wastage. Remember, the food left in the dustbin cannot be given away, but that in the dish can be. Another quotable quote from Mr Khatri – “Waste is just wealth in the wrong place.”
9. Pause and think. What are the practices that are wasting water/food/resources? How can they be modified to stop wastage? Nobody, mortal or god, would be displeased with you for doing your bit for the planet.

 

Terribly tiny moral of the story – Be thoughtful!

 

 

All about Epilepsy aka Seizure Disorder

At Tamahar, we keep organizing sessions with parents as well as teachers to educate them on the generic medical issues as well as typical symptoms seen in children with brain damage.

One such session was taken by Mrs Vaishali Pai on Epilepsy, explaining us what it exactly is and how can one identify whether the fits/jerks are epileptic or not. Here’s a brief transcript of the discussion. Hope this helps you and answers your questions! In case you want to know more, write to us on facebook or email on shivani.tamahar@gmail.com.

What is Epilepsy?

Epilepsy is termed as weakness in nerves, where the wiring of nerves is interconnected. This is a disorder characterized by recurring seizures(Also known as Seizure disorder).

A seizure is a brief, temporary disturbance in(or abnormal) the electrical activity in the brain. Seizure is a symptom of Epilepsy, not a cause. Anything that injures brain can cause seizures.

Anyone can get epilepsy at anytime. 50% of epileptic patients develop seizures by the age of 25. About 1% of population develops Epilepsy and the risk is higher in individuals with Mental Retardation, Alzheimer’s or Those who have had a stroke.

How is it caused?

Brain is the source of Epilepsy. For all functions—like feeling, seeing, thinking etc – moving muscles depend on the electrical signals passed between nerve cells in the brain. A seizure occurs when too many nerve cells in the brain “fire” too quickly causing an “electrical storm”.

Seizures can also be seen in the cases of drug or alcohol abuse, where extreme dehydration happens sometimes. Apart from that Hypoglycemia (in diabetes) can also lead to seizure-like symptoms like giddiness, shivering of hands and legs. Neither of these seizures is epileptic.

In 70% of cases, exact cause of seizures remain unknown. In the rest 30%, most common causes are:

1. Head Trauma
2. Brain Tumour and Stroke
3. Infections of Brain tissue
4. Lead Poisoning
5. Hereditary
6. Prenatal disturbance of Brain development
7. Hypoxia at birth
8. Fever / Infection
9. Drug/alcohol withdrawal
10. Poisoning/Overdose
11. Hypoglycemia
12. Brain neoplasms
13. Psychiatric disorders
14. Eclampsia
15. Hypocalcemia

What are its typical symptoms?

In epilepsy, usually the seizures are recurring. Symptoms of  epileptic seizures are :

1. Periods of blackout or confused memory
2. Occasional “fainting spells”
3. Episodes of blank staring, especially among children
4. Sudden falls for no apparent reason
5. Episodes of blinking or chewing at inappropriate times
6. A convulsion with or without fever
7. Clusters of swift jerking movements in babies.

What are the different kinds of seizures?

There are different type of seziures:

1. Generalized/ Grand Tonic seizure :  Involves the whole brain and loss of consciousness. This has 2 subtypes –
   • Absence –> Brief loss of consciousness
   • Tonic /Clonic –> Rhythmic jerking of muscles
2. Partial/Focal Seizure- Involves only part of the brain (focussed/focal), may or may not include loss of consciousness, symptoms relate to affected part of brain. This has 2 subtypes –
   • Simple partial
   • Complex partial
3. Hysterical – As the name suggest, this type of seizure is a kind of hysteria. It usually happens in front of an audience/group of people. The body movements of the personal are asymmetrical or not purposeful. He/she does not fall down, but hits head on a surface and bites tongue. He/she recalls things said or done during the seizure. Incontinence is rare though. Such incidents are more likely to happen after a interpersonal stress.

Triggers of seizures

• Missed medication is usually the #1 reason
• Stress/anxiety
• Hormonal changes
• Dehydration
• Lack of sleep/extreme fatigue
• Photosensitivity
• Drug/alcohol abuse; drug interactions

Do’s and Don’ts of dealing with seizures

Proper treatment is the only treatment of Epilepsy. However, if you are in a situation where you cannot get immediate medical help and a seizure happens, follow these general guidelines to avoid it from getting really bad.

1. Some people drool during seizures, hence all the saliva comes out instead of going inside the body. This may happen due to the position the person is in. Ensure that this does not happen and the person swallows the saliva. Lack of saliva can potentially cause  higher density of seizures. Provide them with a glass of juice or water to help with this.

2. Hypoglycemia/starving also tends to induce Seizures. When this happens, just tell               the person to lie down on one side.

3. When a patient is in the middle of a seizure –

• Do NOT restrain
• Do NOT put anything in mouth

4.  Once the seizure has stopped

• Open/Clear/Maintain airway
• Roll patient onto side protecting head

Treatment

1. Medication
2. Surgery when trigger zones can be localized
3. Other: Vagal stimulation for partial seizures when medicines don’t work
4. Life style modifications, specially in children and adolescents
5. Counseling
6. In case of Status Epilepticus –

• A condition when consciousness does not return between seizures for more than 30 min. This state may be life-threatening with the development of pyrexia, deepening coma, circulatory collapse. Death occurs in 5-10%. Status epilepticus may occur with frontal lobe lesions (incl. strokes), following head injury, on reducing drug therapy or non compliance with alcohol withdrawal,drug intoxication, metabolic disturbances or during pregnancy.   Take the patient to a hospital asap.

Other types of jerks

Jerks during sleep –  These are not epileptic. Jerks while sleeping is an indication of brain hyper-activity.

Jerks in children while bathing – Non-epileptic. No need to worry as such jerks are just  brain nerve wiring quickly to respond to the temparature of water.

 

Information put together by – Deepthi S, Tamahar Staff

 

Why an early diagnosis is paramount.

As Indians, we have the “Wait-n-watch” germ in our DNA. While this works out well enough in case of general illnesses, this can prove to be a serious deterrent when it comes to development delays in children.

The earlier we reach a diagnosis, earlier we can start containing the damage. This exercise of treating kids at an early stage (infancy or toddler) is called Early Intervention and it is often the make-or-break factor in the rehabilitation of kids.

Here’s why –

1. Emotional development of the person starts soon after birth. Any interruptions in regular development may disrupt emotional development leading to developmental delay.
2. Our brain, which is the most important seat of control, continues to develop for up to 2 years post birth. All experiences that a young infant gets are important in providing smooth development of this immature brain.
3. The earlier we diagnose possible disruption of brain development, the faster we can start procedures to prevent increasing damage of the immature brain and also put in place processes that can improve brain functioning.
4. This intervention needs to be done systematically simply because what typically developing children experience naturally, learning from their and others experiences, children with special needs need to be provided with special experiences that would mimic these learning’s.
5. It helps to have the child medically diagnosed starting with a paediatric neurologist. There are many investigations like MRI, EEG, etc that may be necessary for a doctor to get better understanding.
6. It is now known that only 5-10% of the total population of children with special needs have Cerebral Palsy. It helps to also get a genetic assessment by a Geneticist as it is now confirmed that the incidence of rare diseases in India is almost 1 in 5000.

 

We urge all parents, whose kids are experiencing delays, to reach out and get help for their kid as soon as possible. See a doctor, or get in touch with Tamahar.

How to talk with a child with special needs?

People who are not used to seeing a child with special needs often find the kid strange and feel uncomfortable in the child’s presence. Funny thing is, the child does not feel that way! He/she does not know the same methods of communication that you do.

We’re the “normal” ones, aren’t we? Is it normal to expect a child with brain damage to comply to your view of proper etiquette or social behavior? Why don’t we, for once, instead of expecting them to catch up with our standards, try and understand how we can talk in a way familiar to the kids and enable them to respond to us?

Use these pointers to strike up that conversation –

1. Do not speak loudly unless you know for a fact that the child has difficulty hearing.
2. Touch is an important way for these kids to express their emotions and judge yours. Let them touch your hand or face and do the same thing back, if you think that would help you get the meaning across.
3. Use actions, gestures, words, and signs to convey what you mean to the child.
4. Use these pointers consistently. The child will slowly come to associate the action to the meaning.
5. Give the child time to process what is being said.
6. Do not repeat your commands, suggestions, questions more than twice at a time.
7. Prompt answers when you know that the child has understood, again use the prompts only once or twice at a time. Physically guide the child with the answer – how to say/do it.
8. Develop a comfortable communication system, generalize this system with other family members and friend. Or, learn the existing practices the family uses to communicate with the child.
9. Believe that the child is much more than the diagnosis given and capable of reaching for the stars with you all by his/her side!