Why parents of children with developmental issues need to prioritise self-care

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At the New Horizons Child Development Centre I run in Mumbai, we have served thousands of children and their families since 2003. A consistent observation down the years has been that parental well-being directly impacts a child’s progress – more so, a child with developmental challenges. Our work has demonstrated that when parents feel supported and emotionally balanced, their children show better outcomes in terms of social engagement, emotional regulation, and developmental progress.

WHY ARE CAREGIVERS AT SUCH HIGH RISK?

Parenting a child with autism is always emotionally and physically demanding. Families juggle therapy sessions, manage challenging behaviors, and navigate the education system—all while confronting societal stigma. Often, there is poor family support. Mothers, in particular, often bear the brunt of this load.  My interactions with families has shown that mothers prioritize their child’s needs at the cost of their own emotional health, which over time leads to exhaustion, anxiety, and depression. Very often, there is no end point where the child can become independent and the caregivers may relinquish their responsibility. Prolonged stress, coupled with feelings of isolation and helplessness, can push them toward anxiety, depression, and emotional exhaustion.

Most intervention programs, especially for children with autism, are designed to teach the child different sets of skills that operate best within patterned ecosystems, which largely need caregivers to manage it. Consequently, the child cannot navigate changes - intentional or inadvertent- in this ecosystem,  thus making them dependent on the patterned ecosystem. The child and parent can never exit this ecosystem. Since this has no end date, this adds to the caregiver's burden, inspite of seeking and spending resources like time, money and travel, on the intervention. 

THE LINK BETWEEN PARENTAL MENTAL HEALTH AND CHILD DEVELOPMENT  

Clinical research at New Horizons has consistently demonstrated that: 

1. Parental stress and burnout negatively affect a child’s ability to engage and communicate effectively. 

2. Interventions that address parental mental health—such as counseling and structured parent training—lead to significant improvements in the child’s behavior and social skills.

3. Families that adopt a team-based approach to caregiving experience better outcomes for both the child and the caregiver.

STRATEGIES TO PROTECT CAREGIVERS' MENTAL HEALTH

Empower parents through knowledge and skills: There's a need for programs that equip parents to work with their child in achieving sequential milestones and manage( the child's) behaviors effectively while maintaining their own emotional balance. At New Horizons, we implement structured parent training that seeks to to empower families with the knowledge and skills required to handle their child’s unique challenges. 

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Promote self-care as a necessity, not a luxury: A key learning from my experience has been to understand that ‘self-care enhances caregiving quality’. My team and I generally encourage parents to prioritize their own emotional well-being through mindfulness practices, relaxation techniques, and hobbies that rejuvenate them. Parents must understand that taking time for themselves is an investment in their child’s progress. 

Normalize seeking professional support: Early intervention for parental stress reduces the risk of long-term emotional exhaustion. I, therefore, encourage families to access professional guidance not only for their child but also for themselves.  

Set realistic, achievable goals: Many parents set overly ambitious goals for their child’s progress, often leading to frustration and disappointment. A better approach, instead, would be to celebrate small victories and acknowledge incremental progress, which helps parents maintain a positive and resilient mindset. Connecting with a developmental pediatrician and/or a senior therapist monthly could work wonders.

Create a collaborative ecosystem: In my experience, involving partners, extended family, and professionals in the caregiving process lightens the emotional load. A shared responsibility model ensures that caregivers have the space to recharge and continue their journey with renewed energy. Enlisting aunts and uncles from the extended family, and the neighbourhood, offers the child the essence of nurturing care as well as allows the parents to have time off on their own. 

A NEED FOR SYSTEMIC SUPPORT

While individual efforts can significantly improve caregivers' mental health, there is an urgent need for policy-level interventions that include: 

1. Access to affordable counseling and respite care for families of children with special needs.

2. Community-based programs that provide emotional and practical support to caregivers. 

3. Monitoring incremental progress in the child’s development at regular intervals. 

4. Increased awareness and sensitization about the mental health challenges faced by caregivers.

Caring for caregivers equals caring for the child. My experience has shown that when caregivers feel supported, their children thrive. Conversely, the best way to decrease caregiver stress is to get the child to do progressively better and assimilate in society. As India continues to advance its understanding of autism and developmental challenges, we must ensure that those who nurture these children—day in and day out—are also nurtured, emotionally and mentally. After all, a healthy, emotionally available parent is the greatest gift we can offer a child.

Dr. Samir H Dalwai is a developmental behavioural paediatrician based in Mumbai. 

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