Special Needs Parents Deserve Empathy, Not Humiliation
In Jammu and Kashmir, the situation for children with special needs presents unique challenges and difficulties. The region has a diverse population, with varying access to resources, education, and healthcare. Parents raising children with special needs in J&K face many challenges, including a lack of sufficient infrastructure, limited awareness, limited healthcare and education facilities and cultural stigma.
Raising a child with special needs can be both a deeply rewarding and profoundly challenging journey. However, the emotional toll on parents is often overlooked, and the scars they carry can be hidden beneath the surface. Often, the struggles of parents raising children with disabilities are overshadowed by the challenges their children face. The pain is not just about managing daily care giving tasks or navigating a complex system of healthcare and education. It is the deep, often unspoken emotional burden that weighs heavily on parents of children with special needs. It is time we acknowledge this hidden pain and create a system that empowers these parents to heal. This article is a call to recognize these hidden pains and empower parents of special needs children to heal and thrive.
Moreover, the relentless pressure to be a constant advocate for their child, whether it’s seeking therapies, fighting for appropriate inclusive educational resources, or navigating health care Rehabilitation systems, can cause parents to neglect their own emotional and physical needs. The constant stress can lead to burnout, anxiety, and depression, yet many parents are hesitant to seek help for fear of appearing weak or being misunderstood in the family and society.
I spoke to various parents of children with special needs across Jammu and Kashmir, and I came to know, Parents of children with special needs often face serious mental health challenges, including depression, frustration, and anxiety. A primary cause of this stress is the lack of adequate resources, such as access to appropriate schooling and necessary medical or therapeutic services for their children. In Jammu and Kashmir, special education and early intervention programs are often insufficient or difficult to access, leaving parents to navigate a complex and underdeveloped system. This can lead to feelings of hopelessness and depression as parents struggle to find schools that meet their child’s unique needs or registered Rehab professionals who can provide the required proper care.
Some parents have reported feelings of being exploited by various schools and Rehabilitation child development centers that offer Rehabilitation services. These parents report that their children have been misdiagnosed, and many professionals providing therapy are not qualified, registered practitioners. As a result, parents feel that they are wasting precious time and money, contributing to a sense of confusion and uncertainty about the care their children are receiving. They informed when they try to address their concerns by reaching out to higher authorities or writing to government departments, they are often met with humiliation, dismissive responses, or outright discouragement from the professionals or owner of these rehabilitation centers.
This response has left many parents feeling unheard, unsupported, and vulnerable in their efforts to advocate for their children’s well-being. The lack of accountability and the dismissive attitudes they encounter has significantly exacerbated their emotional and psychological distress, leaving them feeling increasingly frustrated, helpless, and disillusioned. The situation not only affects the parents’ mental health but also casts a shadow over the overall quality of care and support available to children in need of these essential services.
Some parents of adult children with special needs shared that as their children grow older, many parents become increasingly concerned about their future care, especially when there is no reliable support system in place to take over once they can no longer provide care themselves. The fear of who will assume responsibility for their child after they are gone becomes a persistent source of anxiety. I spoke with numerous parents of children with special needs, and a significant percentage, particularly in Kashmir, where resources are scarce, reported experiencing emotional distress. Approximately 95% of these parents revealed that they faced serious issues such as depression or anxiety, with many relying on medication to cope with their emotional burden.
Some parents have shared that despite their best efforts to enroll their children in schools that offer inclusive education facilities, they face significant challenges. Once their children are enrolled they often find that the schools do not have properly registered rehabilitation professionals to provide the necessary support for their children’s needs. Additionally, some schools offer very limited schooling hours often only 2 to 3 hours per day while parents are required to wait for up to 3 hours inside the school premises. This situation causes considerable frustration and emotional distress for many parents, as they feel their children’s educational and developmental needs are not being adequately met, adding to the pressure of managing daily logistics and their own emotional well-being.
Empowering parents involves encouraging them to prioritize their own health and well-being, including like diet, sleep, and self-care. This is crucial because parents are often providing round-the-clock care for their children, which can be physically and emotionally exhausting. It’s important for parents to be reminded of the necessity of taking care of themselves in order to be effective advocates, caregivers, and emotional supporters for their children as well as family. However, the demands of constant care giving often cause many parents to neglect their own health. Additionally it’s essential for all Rehab Professionals to educate parents about their rights so they are better equipped to advocate for themselves and their children in various places. By understanding their rights, parents can more effectively fight for the services, support, and accommodations their families deserve.
The emotional scars of special needs parents must be addressed, not only for their well-being but also for the well-being of the entire family. It is crucial to recognize that parents of special needs children are not just caregivers; they are individuals who also require care, attention, and support. These parents are facing the challenges of raising children with special needs while also managing their own emotional health. Therefore, they need to be empowered, not just to navigate their child’s unique needs but also to reclaim their own emotional resilience and well-being.
The responsibility to support these parents doesn’t rest solely with them it extends to society at large, including governmental and institutional systems. The government, particularly the health and education departments, must take proactive steps to improve facilities and resources for these families. There is a critical need for better rehabilitation facilities and inclusive education for children with special needs in every district of Jammu and Kashmir. Access to specialized care and education can help reduce the emotional burden parent’s face, as it provides them with more support, opportunities, and avenues to improve their child’s quality of life. Inclusive education allows these children to learn alongside their peers in a supportive environment, improving their socialization and academic outcomes while easing the burden on parents.
Furthermore, inclusive education would not only benefit children with special needs but also serve to ease the mental load on parents, knowing their child is in an environment where they are understood and supported. It is essential for the Government Health Department to prioritize the creation and expansion of programs and Rehabilitation Child Development Centers dedicated to meeting the needs of these children and their families. By doing so, they can help prevent the additional stress that comes from a lack of resources or access to appropriate services.
Special needs parents should not be left to navigate these challenges alone, and it is vital that their emotional, educational, and health needs are met with comprehensive support at every level of society. Additionally, the RCI (Rehabilitation Council of India) in New Delhi and the Child Rights bodies should take immediate action if any parents approach them to address concerns about Rehab centers where non-professionals are catering to special needs children, ensuring that parents do not feel unheard. This will help create a safer environment for children and offer much-needed reassurance to parents that their concerns will be taken seriously.
Healing the emotional scars of parents is a collective responsibility one that goes beyond simply providing resources for their children. It’s about creating a society that fully understands the challenges parents face and offers both practical and emotional support. This support should include not only accessible resources but also ensuring parents are well-informed about their rights and the rights of their children. Advocacy for child rights, inclusive policies, and comprehensive Health services should be central to the conversation. By equipping parents with the knowledge and tools necessary to advocate for their children’s needs, we can contribute to building a stronger, more equitable support system for all families, ensuring no parent faces this journey alone
Conclusion
There is strong need for a broad public awareness campaign to shine a light on the often overlooked realities of raising a child with special needs. By reducing stigma, the government, schools, communities, and society must come together to provide more inclusive environments, we can create a world that is not only more supportive but also more empathetic and understanding for both parents and their children. Such education is crucial in shifting public perceptions, ensuring that individuals with special needs and their families are met with dignity, compassion, and respect, rather than judgment or misunderstanding. Ultimately, it’s about creating a culture of empathy, understanding, and support, where parents of special needs children feel seen, heard, and empowered to continue their incredible journey with renewed hope and strength.
“The Greatest Challenge in raising a Child with Special needs is not the Disability, It’s the attitude of the society”… Unknown
(The Author is Sr. Pediatric Rehab Therapist, DIR Floor time Therapist & Social Worker (MSW) working for Child Rights. Feedback: [email protected])
