Empowered families encourage better development in the child

We at Tamahar firmly believe that when it comes to the treatment and rehab process of children with special needs, the involvement and enthusiasm of parents plays a vital role in speeding up the progress of the child.

Patients Engage, an online medical journal, recently did an interview with our founder Mrs Vaishali Pai to talk about why we hold this belief and what is the philosophy behind all we do. It’s a great informative piece and is probably one of the best representations of all we do and stand for!

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EMPOWERED FAMILIES ENCOURAGE BETTER DEVELOPMENT IN THE CHILD

December 02, 2016

Tamahar not only tries to develop the children with various activities, it also brings the family, the primary caregivers, into its fold to help them grow and learn with the children. Vaishali Pai is a visionary and an experienced occupational therapist who set up the Tamahar Trust in 2009 to help children with special needs find their own little spaces in this world. She shares how she would like Tamahar to reach out to more children in future.

Tell us briefly the thoughts behind forming Tamahar.

Travelling to work 20 kms away in a crowded bus every day I could see families with children with disabilities struggling to travel long distances to get to the few centres offering therapy services. By the time they reached the centre, both the child and parents would be tired. Some of them would spend an entire day in this pursuit. People who had hardly enough money to eat had to spend it on bus tickets. Some children were heavy, carrying them was tough. I realised there was a need to have centres all over the city. In a crowded city like Bangalore, we need one every 5-7 kms. The need is that high. Every intervention that is needed, if can be provided under one roof was another idea, parents then don’t need to run from one place to another looking for professionals and services. This was the main reason why Tamahar started.

Tamahar doesn’t just educate children with physical and mental disabilities, but also believes in supporting their families. Could you please explain?

Like a regular school going child who comes home from school and shares experiences with parents, our children cannot do so. Unfortunately, our families (parents) are more in need of knowing exactly what is happening at their schools or therapy centres. We, at Tamahar, believe that parents are primary therapists, they continue with the therapy programme at home, ensuring a 24-hour intervention. This is possible if therapy techniques and teaching techniques are shared with the family and they are encouraged to continue working with the child at home. It is compulsory for our parents to be part of the programme where they are given both theory and practical training on an ongoing basis. Other programmes for the parents include: Support groups for mothers and fathers separately. This is a safe place where parents come and share their fears, anxieties, needs, experiences under the guidance of a clinical psychologist.

We also have a Respite Care programme. Taking care of a child with special needs is a 24/7 job, there is no respite. By providing a safe place to keep the child for short periods like 3 hours or 6 hours, the parents know their child is well taken care of and they are free to pursue their own activities. For the respite care programme, we have tied up with another organisation which offers these services.

You believe in not just caring for the children, but organising special programmes for the mothers, siblings and other relatives. Is it a new thing in caring for children with disabilities? And how do you go about planning it?

For us a child with special needs cannot be separated from the family and given interventions. Every individual from the family undergoes problems if there is a young child to take care of all day, all year. Through programmes that either enhance their knowledge about special needs, or relieve them of stress, we ensure as relaxed an atmosphere as possible. Harmony in the family encourages better development in the child with special needs. Mothers get together once a week. With a clinical psychologist guiding the sessions, mothers are encouraged to share their feelings, learn different skills and vent out their fears and frustrations. They have special dress-up days, movie days as well as other outings. Fathers have a similar session once a month. They get together to also discuss future plans, programmes etc. Siblings come together once a year during the summer camp time. Special programmes are arranged for recreation or to ensure they get an opportunity to share their issues in a safe environment. Thrice a year we also have full day training for both parents where lectures are organised on various topics related to brain damage and development. Apart from this, parents get regular practical and theory classes on an ongoing basis throughout the year.

“Parents are the best therapists once they understand what their children need.”: Can you please explain this?

In developmental delay, in which a child’s development gets delayed due to various reasons, one of them being that the child’s brain is damaged and hence the brain is not equipped to guide his growth, therapy cannot be restricted for a few hours a day, it has to be an ongoing programme. Who better to do this than the family which spends all the time with the child. Instinctively, the parents generally know what is right and what is wrong for the child, and if we combine that with some technical knowledge, then the child gets continued support at home too. We teach best positions for children to be put in, feeding skills, how to teach children to be independent in self-care, and, of course, specific techniques to encourage regular development.

What are the various kinds of therapies that you extend to children with special needs?

Typically, new born children start interacting and learning from the immediate environment soon after birth. As they grow, their movement in the surroundings, their ability to observe teaches them how to move, how to improve and preserve function. Simultaneously they also get the required emotional maturity. Children learn to speak, move, use their hands for working, and think simultaneously. Children who suffer brain damage do not get this opportunity.

In Tamahar we provide opportunities for them to work on all their functions together. We have developed a methodology using this concept. We provide that in a one-on-one situation, where one interventionist works with one child for one hour. In this we combine Occupational Therapy techniques, Speech Therapy techniques and Special Education. They have one and half hours of social activities after this. This is our Pre-School programme, a programme that prepares children to start learning academics. This continues till the children master skills of a 5-year old, after which the children get transferred to our school where we teach functional academics – English, Maths, Kannada (or Hindi), EVS along with extracurricular activities like gardening, out-door and in-door games, Yoga, Music, Dance, Art and Craft.

Yoga therapy, Music Therapy are given to all children twice a week. Recreation Classes (Dance and Fun-Art) are twice a month, Sports coaching is held once a month. For all the children who need it, Physio Therapy is given two or three times a week as necessary. Children are also taken out regularly for field visits, e.g., to a hospital, the Metro rail, Supermarkets, etc.

You are also committed to addressing children from low income groups. Would you like to tell us about it?

Poverty and disability grow together, it is a vicious cycle. Unfortunately, families from low income groups do not get the necessary intervention for their children, very often due to financial constraints. Tamahar is committed to providing quality services to all children irrespective of their socio-economic status, religion, caste, creed. All children get what they need. We have a number of programmes for both the children and their families and the services are the same for both rich and poor families. We want to have our presence in geographical locations in both cities and villages where such facilities are not easily available.

Tell us a little about your team.

We have special educators, physiotherapists, clinical psychologists, Yoga therapists, Music therapists, teacher trainees. We work in a sector where professionals are difficult to source out, especially since the need is also very large. At Tamahar, we offer training to women who like working with children (whether or not they are trained in regular development or special needs). This gives us increased manpower, and it provides jobs to women. We are proud of our women empowerment programme!

Do you think Tamahar stands apart from other organisations of its ilk? If so, how and why?

The reasons why I think Tamahar stands apart are many:

  1. Parents are essential: parents are not bystanders who observe therapies, they have to participate in the programme hands-on. This is compulsory at Tamahar. Other places do not encourage this.
  2. Developmental age and growth is important: Most schools admit children according to their chronological age and also start their training according to those ages. This creates a difference in their understanding and ability and what they are being taught. We start working with children according to their inherent skills and develop them to their chronological skills.
  3. Emotional development is important: From birth, children start a journey on emotional development. This prepares them for all the trials of later life. Our children do not get that opportunity; at Tamahar we ensure that situations help in this emotional growth. Well rounded personalities, giving extracurricular is how we ensure this emotional development. Most schools focus on the necessity of the children to function, we believe that our children need to enjoy life, be independent, and live a life of dignity, not with pity from others, hence we provide basic therapies like Occupational Therapy, Physiotherapy, Speech Therapy etc., but also give them recreational activities, sports training etc..

What are your focus areas?

We work with children who have developmental delay due to abnormal brain functioning, in normal parlance it would mean Cerebral Palsy, Mental Retardation, Autism, Chromosomal or Genetic conditions, etc. Basically, these are children who do not get the chance to have a normally functioning brain due to some medical pathology. We work with children from 0 (birth) onwards and continue working with them, providing them with services and programmes as per their developmental growth.

Can you share a couple of success stories with us?

Karthik came to us as an 8-year-old, having never gone to school. Not being able to talk, with no ideas about play, he spent his time punching buttons on his mother’s phone, and rolling on the ground playing with his saliva. During the first week Karthik managed to stay at the centre for a maximum of 10 minutes, which he spent rolling on the ground and playing with his spit. We persisted in our efforts and before the month was over, Karthik started staying for 30 minutes enjoying playing some simple games and understood what toys meant! Today, Karthik is able to work on toys that are more complex and stays for 45 minutes. He has started saying “amma”, “appa”, etc indicating some of his needs with words. He is now eager to start mixing with his peers! Karthik has not been diagnosed yet.

Another example is of 5-year-old Rajshekhar who has epilepsy. When he first visited us during the January camp, he was unable to keep his eyes open, could not walk by himself, was crying continuously. On questioning the mother, we realised that he was not being given his medications to control his fits. We counselled the mother on the importance of medical treatment, which she followed diligently. Today, Rajshekhar regularly attends sessions, and is full of energy. He loves to run around and play games. He has started saying a few words and is a happy bubbly youngster!

For 6-year-old naughty-faced Shreyas, challenges have been his companion since birth. On the 3rd day of life he had his first taste of epilepsy, followed by delayed milestones and unsteady gait. As is the set practice, a detailed assessment was done at Tamahar along with many visits to meet specialists at different hospitals. His diagnosis came back as Lennox Gastaut Syndrome, a difficult to treat type of epilepsy. A therapy plan to improve Shreyas’ quality of life was started along with medications and brain surgery. Shreyas developed an instant liking to one-on-one interactions with play/fun activities like Circle time and Rhyme time. He also adapted to Yoga and this had a profound impact on his physical strength.

A child who progressed rapidly: this child came when he was 8. Developmentally he was 2 yrs old. With brain damaged children, developmental age will not progress much from there in ordinary circumstances. Within 3 years, he went to developmental age of 5, and started basic academics. Earlier he didn’t understand what play, books or toys meant. Now he goes to learn badminton on a proper court. He writes alphabets, is eager to understand stories from story books.

 

URL – http://www.patientsengage.com/news-and-views/empowered-families-encourage-better-development-child

Red flags in a child’s development parents must never ignore

Every child his or her own pace of development, but there are some definitive signs that indicate a deeper problem and warrant an immediate medical consultation.

We’ve compiled a list of generic developmental delays/issues that all parents must be aware of to realize that their child needs help. Please note that these signs do not necessarily mean that your child has brain damage or mental health issues, but if you find yourself agreeing to the issues listed below, you must see a doctor right away.

There are some signs that are big red flags in themselves. Even if the child does not show any other symptom, this one symptom calls for a consultation. Such issues have been marked with an asterisk sign (*) in the list below.

If, god forbid, your child demonstrates these delays, and you need help/guidance on the next steps, feel free to reach out to Tamahar via our FB page, website or the contact form given on this blog. You can also visit us our centre at Malleshwaram, Bangalore. (Near Malleshwaram Railway Station)

SIGNS OF DEVELOPMENTAL DELAY

Pregnancy

  1. Complications during the 9 months of pregnancy.
  2. Excessive vomiting etc, even after the 4th month of pregnancy.
  3. Baby not moving adequately inside the womb till birth.

Delivery

  1. Pain and contractions before the bag burst and the water leaked.
  2. Caesarian delivery due to problems during birth.
  3. Baby did not cry soon or right after birth.

Age : 0-1 year

  1. Baby excessively quiet or cranky in the hospital after birth, or continued to be quiet or cranky in the next 4-5 months.
  2. Baby unable to suck/breast feed in the days following the birth, or doing so with difficulty.
  3. Baby had breathing difficulty or a seizure episode soon after birth/stay at the hospital.
  4. Repetition of such problems after discharge, at home.
  5. Baby did not feed adequately.
  6. Baby did not pass urine easily.
  7. Baby not looking at the mother and the familiar faces after few weeks.
  8. Does not smile at them, hold on to the mother’s finger while feeding, settle down comfortably when picked up.
  9. Does not start holding up his/her head, roll over, reach out with hands, kick feet in air, laugh, gurgle, be startled by loud sounds or understand when scolded.
  10. Does not come up to sitting independently, stand up, take a few steps.
  11. Does not babble.
  12. Does not want to convey something when talking – not saying something meaningfully, but just randomly repeating words without any purpose.
  13. Does not enjoy songs/nursery rhymes or does not want to join in on the songs.
  14. Does not look at books/pictures.
  15. Does not point at things.

Age : 1-2 years

  1. Baby not comfortable with strangers and familiar people alike after 1 year of age.
  2. Not responding to command.
  3. Use of words restricted to 4-5 keywords.*
  4. No speaking in phrases.
  5. Falling down often.*
  6. Poor eye-hand coordination – unable to throw a ball in a bucket at a distance.*
  7. Difficulty in calming down. for example – continuous crying over trivial matters.*
  8. Inability to sleep for a long time.
  9. Peculiar tastes in food – Would not eat a certain texture of food, or a certain color of food.
  10. Walking started at an age of 1.5 yrs or higher.*

Age : 2-3 years

  1. Unable to re-tell a known story in the right sequence.
  2. Is not interested in keeping a conversation going.*
  3. Likes repetitive games.*
  4. Hyperactivity or complete disinterest (Either extreme).*
  5. No pretend play.*
  6. Not interested in books / not reading even picture books.

Age : 3-5 years(Pre-school)

  1. Hyperactivity.*
  2. No play with peers.*
  3. Staying by self in a group.*
  4. Very good imitation skills.
  5. Disruptive behavior with peers – pinching, pulling hair, biting, hitting.
  6. Repetition of classes over 2 years or more.*
  7. Inability to play with peers in park/playground environment.

Age : 5+ years (School)

  1. Inability to maintain friendships.*
  2. Consistently bad marks in subjects* – despite tuition/after school classes.
  3. Extremely Bad handwriting – illegible.*
  4. Continued disruptive behaviours.*
  5. Recurring symptoms like stomach pain, headache.*
  6. Hyperactivity may or may not happen.

 

 

Featured image : Painting of an Indian Mother by Ilayaraja

What’s going on at the Tamahar trust

Today is just a normal Tuesday at the Tamahar trust. The children, staff and parents are following the same routine to reach their weekly and monthly goals. Yet, as I sit here writing this blog, I know that incredible things are happening around me. I could here a child cry with destess, but the crying faded, quickly replaced by the soothing tones of the music therapist. Other children are in school, learning Kannada or stitching. Each child is being taught different skills with different levels of support to allow them optimum success.

Downstairs, the kindergarten children are in play therapy. They are receiving one on one support to reach their individuals goals through playing with toys, teachers and reading. I can hear a child imitating their teachers animal noises!

As I walk through the school, I pass a small class of six learning Kannada- writing the alphabet and sounding it out. A similar class is taking place upstairs with different children.
I walk upstairs and am soothed by the gentle humming of the music teacher as she uses sounds and music to calm the children and encourage speech. I walk in to the room to see five young children. Two girls have laid their hands on the teachers knees and they giggle as the teacher places her hands gently on top of theirs. It is the sound of comfort and happiness which warms my soul.

The last room that I venture into is also a classroom. The children here are learning how to stitch and I sit with a boy who is struggling to thread his needle. He thanks me for his help and I point out which hole he should put he needle into next. We carry on like this for an hour and he completes the boarder around his piece of fabric. When it is completed, the fabric will have a green border with his name in yellow thead in the centre. He is so proud of his work and I am proud of him too.

Every day, every child here accomplishes something for us all to be proud of

Giving a child a chance

Every child here is so different, but there is no lack of wonderful opportunities to allow them all to succeed. Last Tuesday, I was pleased to be invited to play badminton with the children. A mother and I took four young boys to the local sport centre to play. There, the boys were assisted by professional sports coaches who ran a short warm up. The boys were then divided into two groups based on their abilities and taught accordingly. One group played over the court, trying to hit the shuttlecock over the net or catching it when it was thrown. The other group of boys could not play as well and so focused on how to hit the shuttlecock.

It was great to see the children be given an opportunity to do something that might not be available at home and also to allow them to succeed in something that is none academic. They thoroughly enjoyed the experience, laughing throughout. I could see their confidence and social levels rising throughout the hour and it is safe to say that we were all disappointed when it was time to leave!

It is vital to do these activities with the children, to develop their motor skills but also to improve their self esteem, which is so important. No one can function well in society without some form of confidence in their own capabilities, whether that be in schooling or sport. Experiences like this one are enjoyable and allow the children to develop socially

Inspiring stories

I want to take this opportunity to tell you about all of the little things that happen here, on a daily basis. They will be short narratives of things that I have seen happen at the Tamahar trust and the ways in which the children and staff achieve their goals.

A few weeks ago, I saw the beautiful calming effects of yoga therapy. One particular child was very distressed that day. He could not concentrate on the yoga and was struggling with fits. The teacher decided to tailor the class to him based on this and concentrated on vocal instead of physical yoga. After the half an hour session the boy had calmed considerably and was able to continue with the rest of his day.

Another wonderful story I have to share is one of a boy with cerebral palsy. He cannot walk, stand or move his arms well but he is an intelligent, charming young boy. In yoga therapy he was supported whilst standing to develop his leg muscles. Once standing, he insisted on dancing with all of the adults in the room! They say don’t run before you can walk, but maybe you can dance before you walk? This child’s humour and optimism warms everyone around him.

Getting to know you

Every child is unique and special in their own way and that means that every child works differently. Some children are only interested in music toys, whereas others thrive during complicated tasks like jigsaws.
When I first arrived at the Tamahar trust, I did not know any of the children. I couldn’t pronounce their names properly and didn’t know their ages or family history. Yet, I started working with the children and noting everything about them that I could. This process taught me the true value of knowing and understanding a child and how important that is.

After a few weeks of working with the same children on a daily basis, I came to know certain children quite well. Knowing what they can do and what they will do are the most important things to know because every child needs encouragement to progress. Yet, pressuring a child to do something that they cannot do, can be extremely demoralising for the child. I often find the children are extremely capable but struggle with tiredness or just don’t want to do the activity that you had planned. In times like this, it is important to adapt to the child’s needs and use your knowledge of the child to provide a fun or easier activity, so that the child can participate effectively.

I have come to know two girls particularly well and under guidance have watched their development over several weeks. One of these girls has been learning to raise her arms, which has taken a lot of support and encouragement from me and other staff, but being able to watch her get stronger very day is wonderful. This particular child often gets tired quickly but I have been taught how to watch out for this and have now worked out that singing and music aids this situation. Realisations like this take a while- I tried a lot of other things before singing! Yet, it is this dedication to truly understanding the children and all of their ways that makes the Tamahar staff so special. It was truly wonderful to help this child to achieve one of her goals but it was the support and teaching of the staff that allowed me to do that.

The other young girl who I have gotten to know quite well, is a very bubbly, loving young girl. She is always smiling and that makes me so happy! When I first started working with her, I was purely trying to increase her imitation in play but soon found that she loves colours and is always trying to say their names. So, for the next few days, we worked on several different activities together with coloured blocks or jigsaw pieces and I would tell her the colour names. After a few days, she was repeating the words perfectly! I was so proud.

All of the children here have barriers in the way of their development and learning, yet, their ability and desire to overcome these barriers is truly inspiring

Everyday miracles- The Tamahar trust

Every child has individual needs but some children’s needs are much greater. So what happens to these children? Often, they struggle greatly with schooling and fall quickly behind the rest of the class. These children have special needs and the Tamahar trust exists to make sure no child is left behind or excluded from schooling because of these needs. The Tamahar Trust of Bangalore offers schooling and therapy for babies upwards. The children here have various developmental disorders that require a series of constant and intense therapy sessions for at least a year. The aim of this is to alleviate some of the symptoms of these disorders and develop the children’s personal and interpersonal skills. Most children have one to one support to take part in yoga, art, dance and music therapy as well as regular schooling.

As a new intern at the Tamahar trust, it is my wish to use this blog to explore the beauty of the work that is done here. Whilst I only work at one of the three centres in Bangalore , I am sure that the work done by the Trust is as committed and supportive in each of the centres as it is here.

The Trust, founded by Vishali Pai, is run by a group of committed therapists and teachers, whilst being supported by the mothers of the children. Where possible, the mothers of the children that attend the center volunteer here to offer the one to one support to the children that I previously mentioned. This has the mutual advantage of allowing the women to develop skills and techniques for working with their own children. In my work day, I will dedicate myself to fully exploring all aspects of the center and wish to write about the every day miracles that happen here- a smile, a laugh, a child’s first word. To some, these may seem like simple things but to a mother, or a teacher, or a child who has been working their body and mind for months, that simple step is a small miracle

Normalcy is Overrated!!

This is how I feel each day when I go to Tamahar. Each day I understand life a little more..
It hasn’t been easy working here. Its an emotional roller coaster. Someday’s I feel – why teach these kids..to what end. And someday’s I come back with my head spinning with more ideas.

But the futility of mainstream education.. at least for the first 5-6 years is evident with each day as we work towards preparing them for the world and looking for that spark in their eyes..when they can match an alphabet to the picture or when they can point out to the correct answer for 5+2..

But then the pure joy and bliss comes when the kids actually function as a bunch of ‘normal’ kids..waiting for their turn to answer, or to throw the dice and count the objects, or to be the BIG lion trapped in the ‘dupatta that acts as a net’ so that a small mouse can come and cut away the net.

When one of them decides to take the lead in the morning after the prayers.. He/she goes..Stand at ease! Attention! Always twice before saying.. National anthem begins. And flawlessly in their pronunciations they sing the anthem with pride and enthusiasm.

And so many times I have seen people at movies munching on popcorn or get fidgety during the national anthem. These kids can probably teach them a thing or two about discipline and having fun while learning.
How then are they different from any other child?

Probably because our education system puts them in structured categories.

If ‘Tejaswini’ has difficulty in learning.. She is labelled as child with specific learning disabilities. I have difficulty in remembering dates..or doing simplest of Math calculations. I too then am a child with specific learning disability.
And am sure most of us are.

That’s all there is to know!!

Our mainstream educationists have simply not cracked teaching in a manner that each child can understand.. Unfortunately there is no single way. But the system also does not allow for adapting to various learning capabilities of a child. (‘Normal’ kids included)

I don’t know what to ask for, what blessings to give. For them love is enough.

But my heart goes out to the mothers and fathers..their families. The kids only need love..but sometimes the mothers need more. They also get tired. They loose focus. They wish for a different scenario.

And while its easy for me to ignore a child when required. I cannot expect same understanding from the parents day in and day out.

Tamahar plans to start a respite care centre.. Which will care for the kids while the parents can take time out.
Please send blessings for that dream to come through. Kids are taken care of. Parents need caring far more.

~Prarthana Patil

All about July

July was a busy month at Tamahar. After settling down in June, July saw a lot of activities for the children, staff and mothers!

A soft-skill/leadership training was started on 12th under the guidance of Mr. Magesh Moorthy, who is a well known NLP practitioner and trainer. The staff has enjoyed this on-going training and has participated heartily, asking for more!

27th, Take A Break Respite Care center of the Sacchivya Trust, had an Open House to introduce Yoga, Art Classes, Dance Classes as a part of the recreation program. This is supported by Tamahar Trust and a lot of parents got an opportunity to witness and get answers about the above activities. We have an enthusiastic teacher group working on these activities for all children with special needs.

The same day, a Flea Market was held by mothers of children with special needs at the Tamahar premises. There were exciting items on sale, a healthier twist to the normal Pani-puri, quiling (Paper) jewelry, chutneys and chivdas and yummy parfaits! The event was enjoyed by all, so much so, that there is a demand to have it every month!

Kalasha awards and after…..

It’s been a week since the Inner Wheel Bangalore West gave the “Kalasha” awards. They are given to Women of Substance to celebrate Women’s Day! This award honors and recognizes achievements and contribution of women. A brain child of former President, Inner Wheel, West, Mrs. Seetha, this is an honor bestowed since 13 years! Loved what she spoke about the award! She mentioned how women work without getting due recognition, how in the old days, it was not thought appropriate to praise good work! How she felt good when some of her contribution was recognized! So true, it’s a norm to not mention achievements, that’s how we grow up. Achievements are expected to be part of life, just there, not to be celebrated! I felt awkward getting the award. And here’s why!

There were 3 awardees, one Mrs. Prashantha who has been working the field of Visual impairment and providing housing and jobs for girls with visual impairment, Mrs. Hema Srinivas, founder of the Saranga Trust, working in the educational sector for underprivileged children and me. Both women were around and doing work for at least 3 decades! Did I deserve to be on the same platform as them?

Tamahar is not a one-woman army! It’s reached it’s place because of the contributions from so many people. All the children who come there, their parents, all the staff who work there. The trustees who have faith in us and all the people who have supported us with cash and kind. I had a vision when I founded Tamahar, but it needed this solid backing to function. I am just so glad that we found it! I salute all the people involved in making Tamahar what it is at the moment and the ones that will take it far. I sincerely want to share the Kalasha award given to me with all these people and let them know that their contributions haven’t gone unnoticed!

Does Tamahar deserve this award? I think it does! Now, the challenge is to have many more Tamahars and support many more children and their families!