Caring, as Equals : My Journey as a Special Needs Parent

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The bulk of caregiver responsibilities in families falls on the shoulders of the mother. Or even other women at home. This holds true especially in special needs families. In most cases, the fathers do not or, are not expected to share in these responsibilities. For special needs persons to thrive , fathers / adult men at home must contribute as caregivers as well. Additionally, their equal sharing of responsibilities will prevent the burnout of the primary female caretakers

Sriram Narayan highlights this in his guest blog by tracing his own journey of change. He illustrates how he became an equal caregiver alongside his wife in their special needs family.  

We are grateful to Mr. Sriram for sharing his journey with us

Mr. Fixit to Fatherhood

Fatherhood is a role that I now cherish with a lot of pride. Today, I am an integral part of my son’s daily programs. I support my wife and share my inputs while she strategizes and plans the next steps for our child and the family. I have a strong emotional connection with my son – this enables me to support him through his meltdowns and struggles. Thanks in part to the pandemic, I have reconnected with my daughter. Alongside my wife, I try my best to steer the family’s ship towards a destination that is not known. That said, we have definitely started sailing through life’s turbulence hand in hand, with balance and poise.

Sriram Narayan and his family
My Happy Family
(Faces blurred to protect privacy)

The above is my reality today. Up until a few years ago, this would have seemed like a paragraph out of a fairy tale to me. This story also shrouds my struggle to reach this point in life. That said, this is only the beginning of a long journey to give new meanings to fatherhood.

The Turning Point

When I was busy climbing the corporate ladder, one of my seniors asked me a very thought provoking question. Are you working for the family or is the family working for you? This question made me think about what my priorities were. If I am working for the family, then, all my decisions, including my career path, would be greatly influenced by the needs of the family. On the other hand if my family is working for me, then the equation is different. No matter what happens within or outside my family, I will not compromise on my career. I will make all efforts to focus on my career. Indeed, this is the only notion I grew up with.

When I changed the focus and realigned my motive to “I work for the family”, there was a paradigm shift in my thought process. The purpose of all work changed, away from merely career advancement. This made a significant change to how I interacted with my family. It also impacted how seriously I took up my role as a primary caregiver to my son.

Importance of Being Equal Partners & Caregivers

A typical male in a regular Indian household is a fairly spoiled brat. I was no exception. Housework, cooking, laundry and dish-washing were things that I was never exposed to. I grew up with the understanding that these were the domains of the women in the house. In a special needs family, this equation does not work. Sharing of household tasks and caregiver responsibilities is mandatory for the benefit of the family.

Finding out about therapies, choosing the right interventions, taking the special needs child for therapy sessions and being actively involved in all these – by default, all of this falls squarely upon the mother’s shoulders. Us men leave the work intensive parts of upbringing and caregiver responsibilities to them. Usually, the pretext is that there should be continuity of one person. As fathers, we need to do better. 

Equal Caregivers = Greater Intervention Success

Interventions are successful when there is consistency and persistence from both parents or primary caregivers. When fathers get equally involved in interventions, there is greater effectiveness. The approach becomes more holistic. By participating in this manner, I learnt how to communicate with my non-verbal son, Nishant (who incidentally uses Avaz AAC).

Parents kissing child using AAC on the head.

When fathers participate in decision making processes in a special needs family, the guiding force becomes child-centric. Starting from where we will go for a vacation to checking on the available hotel amenities, mode of travel, who we visit and timing of visits to meal times, where we will live and so much more – almost all decisions emerge from the child’s comfort levels.

As I embarked on this journey, my wife and I became partners – we respected each other’s strengths, and supported each other through difficult periods. My wife adapted herself to motherhood easily. She in turn guided me into fatherhood with an iron hand and a soft glove – giving me the space, yet, not allowing me to give up.

As a husband and wife we have not completely absolved ourselves of our innate roles of nurturer and provider. Akila manages the home, cares for the kids’ emotional well being and also manages the programs for Amaze Trust. I continue to be the breadwinner through consulting assignments and training programs.

Final Thoughts

Here are the principles that guide me and keep me grounded on this continuing journey of fatherhood –

  1. Put career advancement at a lower priority. Family comes first.
  2. Share the workload, especially household tasks.
  3. Partner to participate in therapy sessions.
  4. Make decisions that are child centric.

Parents of special needs children should be equal partners in the journey of enabling their child to lead an empowered life. In this manner we become role models not only for our children, but also for society at large. This will also encourage other family members, caregivers, resource persons and teachers to connect better with the special needs child.

My daughter used to wear a t-shirt that read “My dad can fix anything including broken hearts!” Well, my take on this is  – 

Fix anything “Yes”!
Broken hearts “Well, I am still trying!”

Sriram Narayana

WRITTEN BY

Sriram Narayan

Sriram Narayan is a Management Consultant who lives in Coimbatore. He is the Managing Trustee for Amaze Charitable Trust and is passionate about guiding fathers of special needs children to play an equal and active role in their child’s empowerment. .

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5 thoughts on “Caring, as Equals : My Journey as a Special Needs Parent”

  1. Thank you so much for this moving article. What amazing personal growth and reflection. This is a much over looked and very important and necessary change that can truly change the t outcomes for marriages and their children, both typical and special needs.

  2. I think this is an incredible story. Being a mother if a disabled son, I agree the father’s leave all the housework and the care of the disabled to the mom. Many times we find ourselves overwhelmed. I applaud you for realizing your family needs your help.

  3. I am extremely greatful to Sir for bringing out this support for the caregiving mothers . The child is taken care by the efficient mother but then what about the vulnerable mother, nobody ever gives it a thought. Sir you have given a meaning to the struggling mothers. This should definitely bring in new hope with help for the new mothers. God bless the whole family for being so very supportive.

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