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The Invisible Women

The Invisible
Women

by | Oct 31, 2023 | Blogs, Pregency, Press

The Invisible
Women

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

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

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

by | Oct 31, 2023 | Blogs, Pregency

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

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

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

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

by | Oct 31, 2023 | Blogs, Pregency, Press

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

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.