Beyond Self: Fostering Unity and Advocacy in the Special Needs Community

Parenting is an intricate journey, and when you’re a parent of a child with special needs, the challenges can be even more profound. However, the strength and resilience displayed by parents within the special needs community are truly remarkable. Beyond nurturing their children, many parents are actively engaging in advocacy efforts to empower the special needs community and ensure the rights of individuals with special educational needs (SEN) are recognized and upheld.

Raising a child with special needs brings forth a unique set of challenges that can be overwhelming for parents. However, it’s crucial for special needs parents and the broader community to shift their focus from individual struggles to collective advocacy efforts. By looking beyond their personal experiences and embracing a more inclusive perspective, special needs parents can play a pivotal role in creating a supportive and empowered community.

In this blog, we’ll delve into the importance of how special needs parents can contribute to the advocacy and empower the special needs community.

Understanding the Power of Advocacy

●Advocacy is not just about speaking up for oneself; it’s about amplifying the voices of others who may be facing similar challenges.

●Special needs parents possess a wealth of experience, knowledge, and empathy that can be harnessed to advocate for broader changes within the community and they can even consider volunteering for some causes who are really doing the path breaking work.

●By advocating for a more inclusive society, better access to resources, and improved support systems, they can positively impact the lives of not only their own child but also countless others.

Knowledge is Power: Educate Yourself

●Understanding your child’s specific needs and the legal framework surrounding SEN rights is the foundation of effective advocacy. Educate yourself about relevant laws, regulations, and the rights of children with disabilities in your region.

●Familiarize yourself with Individualized Education Programs (IEPs) and your child’s rights as per NEP 2020 in a school setup to ensure your child’s educational needs are met.

Moving Beyond Self-Absorption

●The journey of a special needs parent can sometimes lead to a self-absorbed mindset, as the constant demands of caregiving can be all-encompassing. However, by expanding their perspective, parents can foster a sense of unity within the community. This requires recognizing that the struggles faced by other parents might be just as daunting, if not more so.

●Empathy and understanding should drive interactions, as it’s important to remember that the person they are communicating with could be a special needs individual themselves or could be experiencing even more challenges.

Creating a Supportive Network

●A strong support network is essential for any parent, but it’s even more crucial for those with special needs children. Special needs parents can contribute to building a supportive network by actively engaging with other parents and caregivers. Connecting with other parents in the special needs community can provide a sense of belonging and a platform for sharing experiences.

●Online forums, local support groups, and social media platforms can help you connect with other parents who can offer advice, resources, and emotional support.

●Sharing experiences, insights, and advice not only helps alleviate isolation but also creates a sense of camaraderie. By offering a listening ear and a helping hand, parents can provide emotional sustenance to others in the community.

Raise Awareness

●Use your voice to raise awareness about the challenges faced by the special needs community.

●Sharing your personal journey and insights through blogs, social media, and public speaking engagements can help dispel misconceptions and foster empathy.

Advocate for Inclusion

●Inclusion is essential for the empowerment of individuals with special needs. Advocate for inclusive education and activities within your community.

●Encourage schools, clubs, and organizations to provide accommodations that allow children with special needs to participate fully.

Empowering Others Through Advocacy

●One of the most powerful ways to make a lasting impact is by empowering others to become advocates themselves.

●Participate in local, national and international advocacy groups dedicated to promoting the rights of individuals with special needs. These groups often organize events, campaigns, and initiatives that focus on creating positive change and raising awareness.

●Special needs parents can encourage and guide fellow parents to voice their concerns, seek support, and actively participate in advocacy efforts. By doing so, they create a ripple effect that extends far beyond their immediate circle, resulting in a stronger, united community that supports each other’s growth and wellbeing.

Collaboration and Collective Action

●Change rarely happens in isolation; it’s often the result of collective action. Special needs parents can come together to form support groups, parent associations, and advocacy committees.

●By pooling resources, knowledge, and skills, they can amplify their efforts and bring about systemic changes.

●Collaborative projects can range from awareness campaigns to lobbying for policy changes that benefit the entire special needs community.

●Establishing strong lines of communication with your child’s school and educators is vital. Attend parent-teacher conferences, IEP meetings, and workshops. Collaborate with teachers, therapists, and counselors to create a comprehensive plan that addresses your child’s unique needs and learning style.

Engage with Legislators and Collaborate with Professionals

●Special needs parents can be powerful advocates by engaging with legislators and policymakers.

●Attend regional meetings, write letters, and participate in campaigns that address issues related to special needs education and services.

●Consult with lawyers, educational consultants, and disability rights experts to navigate complex legal and educational systems. Their expertise can guide you in effectively advocating for your child’s rights.

Promote Self-Care

●Advocacy can be emotionally demanding, especially for single parents.

●Prioritize self-care to avoid burnout. Taking care of your well-being ensures you can continue advocating effectively for your child and the larger special needs community.

Lead by Example

●Your determination and dedication to advocating for your child can inspire others in the special needs community to do the same.

●By leading by example, you create a ripple effect of empowerment and positive change.

In the journey of raising a child with special needs, it’s important for parents to broaden their perspective and embrace a role beyond self-absorption. By advocating for the needs of others, fostering empathy and unity, volunteering for organizations and actively participating in community initiatives, special needs parents can create a powerful impact that goes beyond their personal struggles. By working together and supporting one another, they can pave the way for a more inclusive, empathetic, and empowered special needs community.

Parents of children with special needs possess unique insights and strengths that can significantly contribute to the empowerment of the special needs community. Through education, collaboration, advocacy, and self-care, single parents can work towards ensuring that the rights of individuals with SEN are recognized, respected, and upheld. Your efforts can create a more inclusive and understanding society that supports the potential of every individual, regardless of their abilities.

Thank you for reading! Do comment below and provide your valuable feedback.

Author Shilpi Mayank Awasthi
Founder SpecialSaathi


What after me: a haunting fear

Being a parent of a child with special needs can be a challenging and rewarding experience. Parents often face unique challenges, ranging from navigating the therapies, school, education and healthcare system to managing their child’s daily care needs. While there are many joys associated with raising a child with special needs, there is also a persistent fear that haunts many parents: what will happen to their child after they are gone?

This thought can be overwhelming and anxiety-inducing for many parents. The fear of not being there to care for their child can be all-consuming, leading to feelings of guilt, stress, and despair. But there are certain steps that parents can take to ease their anxiety and ensure that their child will be well taken care of in the future.

As a parent or family member of a child with special needs, ensuring their future security is always a top priority. This can be a daunting task, but with careful planning and preparation, it can be achieved.

In my today’s blog, I will discuss some of the essential steps that can help secure the future of your special needs child to some extent.

Let’s discuss them one by one.

1. Plan for the future for the long-term:

One of the most important steps that parents can take is to plan for the future. Parents of children with special needs must plan for their child’s future in the long term. This means creating a comprehensive plan that outlines the child’s future care needs, including medical care, housing, and financial support. Parents can create a plan that meets their child’s specific needs and ensures that their child will be well cared for after they are gone. Creating a comprehensive plan with a financial advisor, an attorney, and a social worker or a case manager can help ensure all aspects of the child’s future are taken into account.

2. Establish a special needs trust:

A special needs trust is a legal instrument that provides funds to meet the needs of a special needs child after the parents’ death. The funds in a special needs trust do not count as assets of the child, which means that the child can continue to receive government benefits, such as Medicaid and Supplemental Security Income (SSI). Parents can set up a special needs trust with the help of an attorney.

3. Make a will:

Creating a will is an essential step in securing the future of a special needs child. A will outlines how a person’s assets will be distributed after their death. For parents of special needs children, a will can ensure that their child’s financial future is protected. In the will, parents can designate a guardian for their child and provide instructions for their care and well-being.

4. Get a life insurance:

Life insurance is an essential tool for parents of special needs children. It can provide financial support for the child in the event of the parents’ death. Parents should work with a financial advisor to determine the appropriate amount of coverage needed to ensure their child’s financial security.

5. Explore other government benefits:

Government benefits, such as Medicaid and SSI, can provide valuable support for special needs children. These programs can provide financial assistance, healthcare coverage, and other support services. Parents should work with a social worker or case manager to explore the government benefits available to their child.

6. Develop a care plan:

Parents of special needs children should create a care plan that outlines their child’s needs, preferences, and routines. This plan can help ensure that their child’s needs are met, even if the parents are no longer able to provide care. The care plan should include information about the child’s medical history, medications, and daily routines.

7. Build a strong support network:

Another important step is to build a strong support network. Building a support network is critical for parents of special needs children. This network can include family members, friends, healthcare providers, community organizations, and other professionals that can provide assistance and support to the child and their caregiver. Parents can also explore support groups and online communities like to connect with other parents in similar situations and share information and resources.

8. Making the child independent and self-aware

It’s also important for parents to educate their child about their disability and how to manage their own care needs. This includes teaching the child important life skills, such as how to manage their finances, communicate their needs, and advocate for themselves. Parents can also work with their child’s school or community organizations to ensure that their child has access to the resources and support they need to succeed.

Finally, parents can take comfort in the fact that there are many resources available to help families of children with special needs. From government programs to private foundations, there are many organizations that provide financial and other support to families in need. By staying informed and connected to these resources, parents can ensure that their child will be well taken care of in the future.

Yes, the fear of what will happen to a child with special needs after their parents are gone is a common and understandable concern. However, by taking proactive steps to plan for the future, build a support network, educate their child, and stay informed about available resources, parents can ease their anxiety and ensure that their child will be well cared for in the years to come.

So, here concluding my blog, by emphasizing that securing the future of a special needs child requires careful planning and preparation. Parents should work with financial advisors, attorneys, or a social worker to create a comprehensive plan that addresses their child’s financial, healthcare, and living needs. By taking these essential steps, parents can ensure that their special needs child will have a secure and fulfilling future.

Author Shilpi Mayank Awasthi


Featured artwork for this blog is done by CreativeSaathi Gomathi Shankar




When my son was diagnosed, people around me consoled by saying “Don’t worry…all kids are special”.
When I called for an admission in school and told them that my son has special needs, their reply was “All kids are special”.
There were many instances like these. Every time I or rather we get to hear “ALL KIDS ARE SPECIAL”.
Now I have developed a serious issue with this statement. If all kids are special, why is it that few are Neurodivergent and few are not?
If all kids are special, why would there be so much scrutiny for a simple school admission? Moreover, charges also vary. Why do they need “SPECIAL WINGS”?
For few tantrums, immediately we get to hear “What did you give for food? Why is he/she not able to say what the issue is? When are you picking up your kid? “
Why would my kid require someone to look after when I/his dad are not around? Is this the same for neurotypical ones??
I don’t have anything against neurotypical kids or their parents. But I have a severe concern with the generalized statement.
Neurodivergent kids are fighting everyday for their rights to inclusion, education, acceptance and awareness. They are fighting for their voices to be heard. They struggle with day to day activities which includes bathing and brushing. Some even struggle with holding a spoon or chewing. Things that a typical child learns in few weeks, might take a lifetime for special kid.

Although they strive for independence, most of them are dependent on daily chores. Saddest part is they don’t know what to do when their parents are not around. If a typical kid starts life after 25 or so; for most of the neurodivergents, life ends there as parents have their own health issues to handle and they are at the mercy of assisted living facilities.

If one cannot empathize with special kids, at least do not belittle their struggles by making such generalized statements. Life is not so easy for being an actual “SPECIAL KID”

Author Prashanthi Vankamamidi

Prashanthi is a parent mentor & OPT level 1 certified, BG 104 certified and six bricks teacher.

Creative representation for this blog is done by our extremely talented CreativeSaathi associate Nikhil Thotam



Hello Friends!

My son Sarvagya got diagnosed at the age of 3 years. At that point of time, I decided to give up my career since I wanted to support him fully.

Just like any other parent, I also struggled to first accept his diagnosis and then to find a genuine therapist. However, for initial few months, I was very confused and depressed as nothing seemed to work. My anxiety and insecurities were at the peak. Literally, the thoughts about how his future would be, didn’t let me sleep.

Like all other parents, I also joined number of Parents groups where all issues related to kids, be it OT, Speech or special education were discussed day & night and indeed were helpful. However, over a period of time, I started realising that nobody was talking about the financial aspect of autism.

Being a Chartered Accountant, though I had given up my career long back, general ignorance about the importance of financial planning devastated me. At that time, I found myself in that category too. Despite being a finance professional, I too got caught in the web of challenges, therapies & never ending expenses and ended up being ignorant about my own son’s future financial planning. This is when I decided to first plan a secure financial future for my child. Just to share, I am in the process of creating a Special Needs Private Trust for my son. Once I revisited the long forgotten financial basics, I decided to try my bit to create awareness about financial planning with regard to the special needs families.

What I have experienced in my short journey is that so far as autism is concerned, financial planning is the most ignored aspect. By the time we realise how much we need it, it’s already too late. However, it’s nobody’s fault. We, special parents, are so over occupied with daily unexpected challenges that thinking about financial planning takes a back seat.

Life is very unpredictable. It is very important to start planning as early as possible. As we grow older, thoughts about the future and how our children will be provided for after we are gone start haunting us day and night. In a situation, where a couple has a special needs child, these thoughts literally scare them every moment from the day they discover about their child. “What after us?” is what they constantly keep thinking because when you have a special child, not only do you have to financially provide for that child after you’re gone, but you must also ensure that the child is well taken care of & that parents’ death does not compromise the child’s welfare and mental health in any way.

Planning for the future when you have an autistic child can be difficult & mentally stressful, but if you start early and take the right approach, you can successfully pave the way for a financially independent future for your child with autism, even when you both are no more in this world.
Being a finance professional and a special parent, I have started this series of ‘Financial Planning for Special Needs Families’.

Image source-

Today’s blog is an introduction to my thoughts regarding importance of financial planning for special needs families. In coming weeks, I will be discussing briefly some very important financial aspects viz Estate planning, Legal guardianship, various income tax benefits, Special Needs Trust, Will, Investment Planning, etc. I will try to share everything whatever little knowledge I have. Hope this initiative of creating awareness regarding Financial Planning will be helpful to all.

Thanks for patient reading,
Author Shivani Lohia

Shivani Lohia is a Chartered Accountant by profession and mother to 8 years old child on the autism spectrum. The cause of autism awareness is very close to her heart and she strongly believes in equal education for all & strongly advocates inclusion. She has been homeschooling her son since he was 5 years old.

Creative representation of this blog is done by our extremely talented CreativeSaathi associate Morpheus Nag