Mental health rarely gets treated with the same seriousness as physical health.
Most people only stop to think about it when something begins affecting daily life in visible ways. Until then, it stays somewhere at the bottom of the list. Something to deal with later.
For many parents and caregivers of children with disabilities, there often isn’t a “later.”
There are therapies to attend, routines to maintain, schools to coordinate with, reports to understand, financial decisions to make, futures to think about. Life keeps moving, whether or not there has been any space to emotionally process what is happening.
This piece came from conversations with two women from the Avaz team: Lakshmi Kannan – Training and Community Engagement Manager, and Remya – Product Manager.
Lakshmi raised twins, Roshan and Roshini, in Chennai more than a decade ago. Roshan was diagnosed with Cerebral Palsy at a time when awareness, access, and developmental support systems looked very different from today.
Remya is a mother to teenage twin daughters on the autism spectrum. Her early years of parenting unfolded in California, away from extended family support, while navigating therapies, IEPs, school systems, and everyday life in a country with more structured systems but a very different kind of isolation.
Both of them spoke about caregiving, mental health, exhaustion, adaptation, guilt, support, and survival in ways that felt unusually honest.
At one point during the conversations, Remya said:
“You just keep going.”
That sentence stayed.
When everything shifted
Lakshmi remembers exactly when she realized something was different.
“My Roshan was 7 months old when he couldn’t hold his head or turn to his side on his own.”
At home, she was watching her twins grow very differently.
“My Roshini was crawling around the house, trying to pull herself up, and he was still working so hard just to hold his neck. Watching Roshini reach milestone after milestone while Roshan was fighting for every small movement.”
In California, Remya remembers something else surfacing first.
“I did go through the very human ‘why me?’ phase.”
But both conversations kept returning to the same thing: there wasn’t much time to sit with emotions.
“We didn’t give ourselves much time to sit with the emotions, we just channelled everything into action.”
Lakshmi’s days became:
“Morning routines, cleaning up, feeding, doctors, therapy centres, scans, tests, multiple hospitals, endless advice.”
Remya started reading.
“I would borrow stacks of books from the library and read late into the night.”
“I didn’t have a clear roadmap, so I built my own – piece by piece, through reading, questioning, and trial and error.”
One mother was taking government buses from rural Tiruvallur to special schools nearly 30 kilometres away. The other was learning how to navigate IEPs, therapists, and insurance systems in the US.
Different countries. Different systems. Different diagnoses.
But emotionally, parts of their experiences felt strangely similar.
What strength looked like from the outside
Both of them spoke about being perceived as strong.
Lakshmi remembers hearing:
“She is so strong, taking Roshan around is no big deal for her.”
But what people saw externally often had very little to do with how things felt internally.
“What they didn’t see was what it took to walk through that door every single day. Strength was never the absence of struggle. It was just that I had no other choice.”
Remya said something similar in a completely different way.
“It didn’t feel composed. It felt like constant responsibility.”
She spoke about putting her career on hold, then trying to rebuild it years later.
“I had to begin from the bottom again, learning everything from scratch, taking up even an unpaid developer apprenticeship just to get back in.”
At the same time, life at home continued uninterrupted.
“No matter how hard a day was, the next morning you had to wake up and start again.”
Lakshmi described that phase more directly:
“Looking back, I was just surviving.”
Carrying uncertainty for years
A lot of the exhaustion they described had less to do with physical work and more to do with carrying uncertainty for long periods of time.
Lakshmi spent nearly two years without clarity around Roshan’s condition.
“No one gave me clarity for two whole years. No one ever sat me down and explained them clearly. That silence cost us time we could never get back.”
For Remya, the pressure came less from lack of information and more from constantly trying to make the “right” decisions.
“You want to be a good parent, make the right choices, give your child the best…”
Then she added:
“I should be doing this.”
“I should be handling it better.”
“I should be like that parent.“
Her daughters are teenagers now, preparing for board exams. The questions have changed, but the uncertainty hasn’t disappeared.
“The challenges don’t really go away, they just change form.”
Systems can support you. They cannot emotionally hold you
Their experiences with support also looked very different.
Lakshmi was navigating disability support in Chennai over a decade ago while managing a family of six on ₹25,000 a month.
“The nearest special school was 28 kilometres away, an hour on a government bus each way.”
She spoke with gratitude about eventually finding support through government schemes, therapists, special educators, and AAC.
“Avaz was gifted to us by the Avaz team and school, a true turning point.”
But she also spoke about how alone she felt emotionally.
“No one counselled me on what Roshan’s condition truly meant or what he needed. That was the gap that hurt the most.”
Remya’s experience in the US had more systems and structure.
“Once the IEP was in place, support through the school system did exist.”
But there was very little day-to-day support around parenting itself.
“We didn’t have immediate family or help around us.”
Life became highly organized around therapies, food preparation, routines, and schedules.
Now back in Bangalore, she says things feel easier practically because of family support and help at home. But she still feels parents are often left to navigate emotionally complicated decisions largely on their own.
“What’s really missing is support that helps parents find their own balance.”
“You are a mother, but you are human too.”
There were moments in both conversations that stayed long after reading them.
Lakshmi writing:
“He comforted me more than I comforted him.”
Or Remya describing how coding and studying became a way to cope because it gave her mind somewhere else to go for a while.
Or Lakshmi deciding she would stop explaining her son’s condition to everyone.
“Not every person deserves an explanation, and not every opinion deserves my energy.”
And somewhere between all of these moments was another thought that kept returning:
How often do we ask caregivers how they are doing beyond whether things are “manageable”?
How often do friends, family members, workplaces, or communities make room for the emotional reality of caregiving, instead of only the logistics around it?
Lakshmi wrote something very simple at one point:
“You are a mother, but you are human too.”
It feels obvious reading it.
But maybe it needs to be said more often than we think.
The Hope
Toward the end of the conversation, Remya reflected on something she is still learning:
“Sometimes, you do what you can, and beyond that, you have to let things unfold in their own way.”
Lakshmi ended with this:
“The hope. Even after losing my son, that hope has not left me. If even a small part of my story can be a strength to another mother walking this road, that is the part of me that is still evolving, still alive, still moving forward.”
These conversations may not give parents answers, but they might give something else: The feeling that some of these thoughts, fears, exhaustion, contradictions, and emotions are shared more widely than people often realize.
And sometimes, that matters too.
