A Father’s Journey with Autism- Chapter 26
Concluding Chapter: What will happen to Simi after us?

In this blog post, I am pausing my writing as I’ve already covered a significant part of my journey with Simi as a father in the previous 25 chapters. However, before this pause, there’s a crucial question that weighs heavily on my mind: “What will happen to Simi after us?” This question is one that I believe keeps many parents of neurodivergent children awake at night, especially those of us who are nearing the end of their lives or approaching that stage.

General Consideration:
Understanding the future prospects for neurodivergent children involves considering various facets of their lives and the support systems available to them. Neurodivergent individuals encompass a broad spectrum, including those with autism, ADHD, dyslexia, and other neurological differences that affect cognitive functions and social interactions.

Historically, societal attitudes towards neurodivergence have evolved from ignorance and stigma to recognition and advocacy for inclusivity and support. The past saw many individuals marginalized or misunderstood due to their differences, often lacking appropriate educational and social opportunities. However, with advances in neuroscience, psychology, and education, there has been a growing understanding of neurodiversity as a natural variation in human cognition rather than a disorder to be corrected.

Today, efforts are focused on creating environments that accommodate neurodivergent traits, offering tailored support in education, employment, and social settings. Schools and workplaces are increasingly adopting inclusive practices, such as sensory-friendly environments, flexible learning structures, and diversity training for educators and employers. These initiatives aim to harness the unique strengths of neurodivergent individuals, such as creativity, attention to detail, and problem-solving abilities.

Looking forward, the future holds promise as awareness continues to grow, leading to improved access to resources and services for neurodivergent children and their families. Research into effective interventions and therapies is expanding, along with initiatives to promote neurodiversity acceptance in mainstream society.

Ultimately, the goal is to empower neurodivergent individuals to thrive independently, contributing their unique perspectives and talents to society. By fostering understanding and support from childhood through adulthood, we can create a future where neurodiversity is celebrated, and every individual has the opportunity to reach their full potential.

My Background:

When contemplating the future of a neurodivergent child, several crucial factors come into play, including family background, the strength of the family support system, financial stability, and the availability of resources etc. Personally, I come from a close-knit joint family background, where I am the youngest among my siblings. Sadly, I lost my mother when I was just 21 days old and my father when I was 20 years old. Despite these early losses, I have been fortunate to receive unwavering care and support from my elder brothers and sisters, who have nurtured a strong familial bond.

In our family, comprised of two elder brothers and five sisters, our unity and support for each other have been foundational. Beyond my immediate siblings, I do not have relatives from either my paternal or maternal sides. This upbringing has shaped my understanding of the vital role family plays in the life of a neurodivergent child, emphasizing the importance of a supportive network and stable environment for their well-being and prospects.

Given our joint family backgrounds, both my spouse Padmaja and I understand the significance of familial support. Padmaja, being the youngest among her siblings and near relatives, shares a similar upbringing emphasizing strong family bonds.

Considering this background, we do not anticipate relying on our siblings for Simi’s care in the future. Instead, our immediate focus turns to Simi’s cousins as she has no siblings. Simi is fortunate to have nine cousin brothers and Seven  cousin sisters, all of whom have a deep affection for her. We trust that they will provide attentive care and support for Simi when we are no longer able to do so ourselves. This assurance stems from the strong familial ties and mutual affection that exist within our extended family circle.

In the current nuclear family setup, we also do not expect Simi to become dependent or burdensome to any of her cousin brothers or sisters. Our goal is to ensure that Simi has a secure future, particularly from a financial standpoint. I am deeply grateful to Almighty God for granting me the capability to provide for Simi’s financial needs. This enables us to plan for her future with confidence, knowing that she will be well-supported and cared for, even when we are no longer here to do so ourselves.

I’ve come to realize that when daunting questions shake our confidence, it’s not about letting them weigh us down but rather embracing them as new challenges. One such question that once troubled me deeply was “What will happen to Simi after 20 years?” (deliberated in my Chapter 25) This question loomed large during my early thirties, especially when contemplating Simi’s future twenty years down the line.

However, with time and reflection, I’ve grown into a better position to confront this question “What will happen to Simi after us?” head-on. Instead of allowing it to overwhelm me, I now see it as an opportunity to plan and prepare for Simi’s future with confidence and optimism. This shift in perspective has empowered me to approach the question of Simi’s future with a proactive mindset, ensuring that she will be well-supported and cared for, even after I am no longer here.

When planning for the future of a neurodivergent child after their parents are no longer able to care for them, several critical factors need to be considered:

1. Guardianship and Care: Identify and appoint a suitable legal guardian or caretaker who understands the unique needs of the neurodivergent child and can provide appropriate care and support.
2. Financial Planning: Ensure there are sufficient financial resources allocated for the ongoing care, medical needs, and living expenses of the child. This may involve setting up a trust fund, life insurance policies, or other financial arrangements.
3. Housing and Living Arrangements: Determine where and how the child will live. This could involve arrangements for independent living, assisted living facilities, or group homes that cater to neurodivergent individuals.
4. Education and Development: Plan for continued education and skill development programs that meet the child’s specific needs and abilities. This may include special education services, vocational training, or therapy sessions.
5. Social and Emotional Support: Consider the child’s social needs and ensure they have access to a supportive community or network of peers, mentors, and caregivers who can provide emotional support and companionship.
6. Legal and Administrative Matters: Ensure all legal documents, such as wills, trusts, powers of attorney, and medical directives, are in place and updated regularly to reflect the child’s changing needs and circumstances.
7. Transition Planning: Develop a transition plan that outlines steps for the child’s smooth transition to adulthood, including employment opportunities, social integration, and ongoing support services.
8. Advocacy and Awareness: Advocate for the rights and inclusion of neurodivergent individuals in society. Raise awareness among family members, caregivers, and the community about the child’s needs and abilities.
9. Continued Family and Community Support: Maintain strong connections with extended family members, friends, and community resources that can offer ongoing support and assistance to the child.
10. Regular Review and Adjustment: Regularly review and update the child’s care plan and arrangements as needed, considering changes in their health, abilities, or circumstances.

By carefully considering these factors and making appropriate plans, parents can help ensure a secure and fulfilling future for their neurodivergent child even after they are no longer able to provide direct care.

In India, facilities and support systems for autistic individuals, particularly after their parents are no longer available, are gradually improving but still vary widely across different regions. Here are some of the key facilities and support options available:

Residential Care Facilities:

a. Group Homes: These are residential facilities specifically designed for individuals with autism spectrum disorder (ASD). They provide a structured living environment with trained staff to support daily living activities and social integration.
b. Assisted Living Centers: These facilities offer varying levels of support depending on the individual’s needs, including assistance with daily tasks, medical care, and recreational activities.

Special Education and Vocational Training:

a. Special Schools: There are specialized schools across India that cater to children and adults with autism, providing tailored educational programs, therapies, and life skills training.
b. Vocational Training Centers: These centers focus on equipping individuals with autism with skills for employment and independent living, such as vocational skills training, job placement assistance, and career counseling.

Therapeutic and Medical Services:
a. Therapies: Access to therapies such as speech therapy, occupational therapy, and behavioral therapy is crucial for autistic individuals. Many centers and hospitals offer these services, albeit availability can be limited in rural areas.
b. Medical Care: Regular medical check-ups and access to specialists who understand autism-specific healthcare needs, including psychiatrists and neurologists.

Day Care and Respite Care Services:

a. Day Care Centers: These provide structured activities and social interaction opportunities during daytime hours, offering respite to families and caregivers.
b. Respite Care: Short-term care services that give caregivers temporary relief by providing professional support for the individual with autism.

Legal and Financial Planning Services:

a. Legal Guardianship: Establishing legal guardianship arrangements to ensure continuity of care and decision-making for autistic individuals after their parents are no longer available.
b. Financial Planning: Assistance in setting up trusts, managing finances, and accessing government benefits or schemes designed for individuals with disabilities.

Support Groups and Advocacy Organizations:

Various support groups and non-governmental organizations (NGOs) in India advocate for the rights and inclusion of individuals with autism. They provide information, support networks, and resources for families and caregivers.

Government Initiatives and Schemes:

Some states in India have initiated programs and schemes to support individuals with disabilities, including autism. These may include financial assistance, healthcare subsidies, and educational scholarships.

It’s important to note that the availability and quality of these facilities and services can vary significantly depending on the region and financial resources available. Families and caregivers are encouraged to explore local resources, network with other families, and seek professional advice to determine the best options for their loved one with autism after they are no longer able to provide direct care.



Author
Srinibash Mishra

Acknowledgement:

I am deeply grateful to all my family members, my wife, friends, and well-wishers whose unwavering encouragement motivated me to document my journey with Simi.

A special acknowledgment goes to Shilpi Mayank Awasthi, founder of SpecialSaathi, whose support and dedication in publishing my blogs and urging me to continue writing have been invaluable.

I am especially thankful to Simi, whose presence in my life has inspired me to share our journey for the benefit of other parents.

If any of my writings have inadvertently caused discomfort, I sincerely apologize, as it was never my intention.

While I am concluding my current writing here, my journey with Simi and my commitment to serving both her and society at large continue. I look forward to returning with more discussions on various issues concerning these special individuals, whom I consider to be God’s unique creations.