Among the many wonders in the world, it’s also a wonder how an individual's life turns around the birth of a child. Although the celebration at the birth of a newborn appears to be around the arrival of a child, it actually celebrates the birth of a new journey the parents are about to embark on.
We see parents tirelessly champion their children’s needs, showcasing unwavering dedication and boundless love. The journey gets fierce and more passionate, with special needs parents.
Advocacy is one of the most powerful tools for an equitable society. A special needs child struggles to express their needs and challenges. Unless the challenges are spoken about and explicitly discussed a disability leads to unfathomable suffering of the individual and the immediate family. The need for advocacy is in the journey to increase awareness, transitioning sympathy to empathy, in short, paving the way to make a “just society”.
It’s a parent at their best when they become parent advocates. A vigilant special needs parent ensures their rights and needs are met. Special needs parents navigate complex systems of daily life, education, and healthcare. A special needs parent becomes a facilitator, and a stakeholder in the child’s journey towards success.
A parent advocate also helps secure necessary resources and accommodations for their child. Parents intimately experience and understand the real-life challenges their child faces. Parents become the voice for their children.
The daily challenges, extreme emotional turmoil and the purest of intent leads a parent activist to come up with effective and impactful campaigns.
The very personal learnings as a parent build resilience and help collate experiences enriching the journey of advocacy. Parents become the most important bridge between success and the child.
An activist parent researches extensively to collate and spread relevant information to the community, working extensively for the common good of a larger community of parents dealing with special needs or various disabilities. They make genuine efforts to influence public opinion and collect evidence to make laws to pro-disability laws to bring about positive changes and solutions.
The first aspect of learning one’s curiosity that stems from one’s everyday realizations.
It helps you to set and track goals. Journals work as a reference and release stress.
Learn about various disabilities, and how it is manifested as challenges, and update yourself with disability provisions and laws. A conscious effort to acquire knowledge and skills helps in better management of tasks at hand.
Interacting and sharing with a multi-disciplinary team is a very important way to propel towards achievements.
Be a part and follow a community that is committed to making a difference. For example, Aditya Birla Educational Trust to learn the new approaches & strategies.
Tips to remember while practising special needs advocacy.
We should watch out for emotional Burnout. It is very important to take care of yourself, as advocacy is extremely draining.
At most caution needs to be practised as it is crucial to respect individual and family boundaries.
Communication needs to be clear, assertive, and respectful. Consideration and understanding of ethical, cultural ways of living are needed while communicating with impacted families.
Some resources and organizations in India that can help parents advocate for their special needs children:
Special needs advocacy by parents is a vital component in ensuring that children with disabilities receive the support, resources, and recognition they deserve.
Parents, being the closest to their children, are uniquely positioned to understand their needs and advocate effectively on their behalf. This role requires immense dedication, resilience, and a comprehensive understanding of both the child's needs and the available resources.
Through persistent and compassionate advocacy, parents can help create a more inclusive and supportive environment, fostering their child's development and well-being
