Having a special child means a new parenting mode unlike many others in the world. While many are grappling with circumstances and take bold steps to take care of their children, parents do worry what will happen when they aren’t around forever. Who is going to take care of the child? There were far more issues to be addressed, like his or her emotional needs, medical needs, financial needs; all of which form a regular living in the world.
Chitra Iyer a mum to an autistic child had the vision to lay out the financial map for her child who is an adult now and also has taken a step further to help many other parents who need financial guidance when bringing up special children. Her experience as a certified financial planner and cost accountant ensured she builds a road map for her child’s well-being and help many others who grapple with financial insecurities when it comes to special children.
Chitra Iyer shares her story with Mums and Stories, “I come from a very simple and traditional Tamil family of my dad, mom and my brother. My best memories were many, a few distinct ones being, I remember going to the movies with my parents. I also cherish our holidays that dad took us out to, not too many but they were special for me. I loved my school and have the fondest memories of studying, playing and making friends. I was selected by my teachers to stand in elections in school in Class Xth and got elected by my peers, wearing the badge and leading a house was a very transformational moment for me where I was recognised, appreciated and I felt I had the capabilities to do much more.
I always loved sports and was a sincere student. Yes my teachers and the nuns in school prepared us to have the right values for life, we used to pray a lot and we were always taught to pray for others, this is a very strong memory for me…That taught me to be grateful and feel blessed always.
Marriage was a love affair. We were in college together but a friend played cupid long after we were out of college…he spoke to both of us asking why we weren’t thinking about each other and that got us going. I never thought I would have a love marriage but am so glad I got to marry Ravi and no one else. I got the freedom and independence to do what I wanted. His family was amazing my mother-in-law, my sisters-in-law who practically raised him had made him a feminist too so that really helped me. We were equals from day one and we enjoyed and still continue to enjoy each other’s profession and take all decisions together. Motherhood came on time we got married at 26 and I had Shravan at 29.
The pregnancy at the absolute last stage was stressful for Shravan, the paediatrician neglected his role and caused a lot of harm to my son.
He was too casual about the check-up and did not direct us to a NICU to deliver my baby before time. He came out with three knots in the umbilical cord, was full term and his weight was 2.5 kgs. My weight had added well, but the nutrients didn’t reach the baby. He had seizures in hospital on the very second day of birth then he was kept in the NICU for 20 days post which we had to do multiple tests CT scans, MRIs and we were informed that he will have gross developmental delay and he has cerebral palsy as a particular area of his brain was affected and he kept having convulsions.
They finally settled after trying a huge combination of medication under Dr. Udani at Hinduja Hospital and a lucky meeting through a friend with a French neurologist who had invented a new drug just then.
A neighbour doctor couple told us how Shravan would never sit, stand or be able to go to school. We were shocked out of our wits then and decided let’s do everything we can to see how to help Shravan sit, stand and go to school.
I used to take him to therapy all over town physiotherapy, occupational therapy, speech therapy, special education, music therapy, play in the garden, come home do everything that the therapists said I should repeat at least 3-4 times a day.
I read a lot and attended lectures to understand his condition better and met a parent who directed me to attend the workshop on Autism in Mumbai. I felt that everything that was shared in the workshop by Ms. Merry Barua completely matched with Shravans actual abilities. Soon after at age 3 and a half, he was diagnosed as being on the spectrum with secondary traits of autism and we began our journey of intervention for him. It was complex for him, and he struggled and put in so much effort when we were trying to get his motor skills going as he still was learning to sit, stand and walk. This came through by his age of six, but parallely I was focussing a lot on his sensory integration, special education and speech therapy. We saw him overcome his physical challenges well and the autism was staring at us in our face. Today he is 21, he can walk independently, climb stairs, cycle and skate with help, feed, bathe, brush, dress himself all assisted by one of us. We are home schooling him and the focus is on making him independent for his daily life activities and also trying out which vocational activity he would be comfortable with in the future. Yes Shravan is our only son, we had planned to adopt a second child before we had Shravan, but later we couldn’t go ahead with the decision.
Emotionally, the first 10 years of our son’s life was full of just understanding, coming to terms and accepting his diagnosis. The next 10 years saw his transitioning from adolescence to adult life and the next phase of his life which he has just begun, where our focus is to make him as independent as he can by the time he turns 40.
This phase will help us understand how independent he can become in living his life, what can we figure as occupation for him and figure out what will be his needs that we would be comfortable with as long as we are alive. Every parent with a special needs child is constantly worried about how will their child be looked after once they are gone.
I never thought about getting back to my career in finance, but only about what I need to do to get Shravan off a wheel chair and see what will help us get through to him through his autism. I was a cost accountant and had already put in 10 years plus of work in various organisations in finance before Shravan was born.”
Talking about her role as a mother, mentor and much more for a special child Chitra says “ In the year 2006, when I was waiting outside his school on the balcony reading a book, I bumped into Amar Pandit the founder of MFA who asked me why I was reading that particular book as he was reading it too. He invited me into his office and shared what he had set up to do. He explained why people need to hire a financial planner to help with their families’ finances and the way he explained the process got my husband and me completely convinced about what he was saying. We first signed up with him as clients and he also asked me if I would like to join him part time around my time commitments with Shravan and my life took a whole new turn as I joined up with MFA.
The financial planning process helped us plan our life goals and finances that would be needed for Shravan and us and we started our journey in a very disciplined way exactly how Amar coached us. I understood how powerful this kind of planning was for any family and reached out to everyone we knew our closest friends and family to help them also with their personal finances. I qualified as a Certified Financial Planner as encouraged by Amar and that helped me learn and grow in my career as a financial coach. I have been with the company for 14 years of its 15 years now, we are a team of 100 passionate people and we manage 350 plus families monies. I am the CEO of the company now and enjoy my work helping families day in and out. Along these years a lot of my friends with special needs children started asking me how we were doing it and if I can help them with managing their finances. I built the expertise in our company for this segment of families who have the extended responsibility of planning monies for two generations one their own and second one of their child till as long as they are alive.
I started with workshops for parents to talk to them about how to start planning for their future. Everyone is already taking decisions on their money, but I wanted to hand hold people with understanding how to do it the right way.
Our industry is full of people who sell the wrong products and special needs families are susceptible and fall prey to all these so called advisors who are actually insurance agents or brokers etc who may not have the interest of the family in mind at all. Hence I set up a practice purely for parents of children with special needs to specifically address all their concerns. The service helps families think through the financial needs quantify them, put a date to it and review them periodically. It helps assess where all they have already invested their money and if it is in the right place or not. Then we help in making a plan to ensure how the family can actually reach the financial goals stated over their lifetime, giving them a lot of confidence and peace about taking care of their child when they are no more.
Starting to think how independent their kids will be is something parents have to set aside time for. What the kid will do with the time on their hands, where will they stay, what is the expectation of the parent on where the adult will be employed in a vocation at home, at a sheltered workshop or in a corporate. They need to think through about moneys needed for their child for the whole of his life. They need to put down what they would need money for, to get help to do some investment planning.
So plan about all that needs to be put in place with several factors counted in like:
Family: Who are the people who truly understand the child and can be relied on
Legally: guardianship, Wills, Trust
Financially: invest for self and for the special needs child
Medically: get regular check-ups done, have an advisory group of doctors
Time planning: what, where will the adult be and do what to spend his time that will give him happiness.”
Talking further on how the year 2020 has impacted children and parents of special children, Chitra says, “ Covid in the year 2020 has restricted movement of the children in a big way. Their usual structure is disrupted. Their learning is affected. That said a lot of parents have shared how the kids are happy sitting at home and have adjusted really well. They are really happy to have the parents around. Trying to do as best that is possible given limited space and time with some learning and playing that may be more is how parents can manage. Online learning is a good way of engaging the children and can be taught gradually. Of course you have to go with what the child likes maybe drawing, dancing or coding whatever it is that can be encouraged.”
Talking about moms in this phase Chitra says, “Moms have to learn to be more patient, I have learnt and continue to become more patient thanks to my kid. After the initial impact and acceptance of the diagnosis which happened again and again in my kids case first epilepsy, then cerebral palsy and then the autism moving quickly to being practical rather than self-pity is crucial in the initial phase where early intervention needs to start for the child asap.
There are so many things that you have to learn about your child and grasp what is right and wrong for your kid, only if you can be emotionally strong will you be able to do the right things for your child. Else you will lose on time and lose focus on what you wish to achieve for your child as they grow up. New challenges will come and go but with positivity you can overcome all of this.
Lastly I would like to share that you need to find out and be part of a parent support group, it helps learning from parents. I am part of Forum For Autism and I have learnt so much from older parents on what options I should think through if faced with new challenges. It helps to share a lot of achievements that may be trivial to others, but huge to your group who understands your child. It is a safe group that will help your child make friends within the group and for parents to think about the future together.
2) Be positive, give your child the best attention you can. Be perceptive, understand their problems and work solutions for them as they are fully dependent on you. Never harm them or let them come in harm’s way ever.
3) Plan for their future. What would they do if you were not there for them? You are responsible to write down everything that they like, dislike, who matters, family, friends, the professionals in their life, doctors, teachers, well-wishers, bankers, financial planners, lawyers everything so that they don’t have to fend for themselves or people don’t have to wonder what to do for them.
4) Do invest for them and their future as soon as you know your situation is different. They will need a lot of money and you can do everything you want for them only if you start doing this early. Get good professionals to help you do this for them.
5) Talk to your spouse, your family, and friends take their suggestions. It takes a village to raise a child, but with a special needs child you need an inclusive village … it cannot be done by the parents alone. “
This has been one of the important stories featured on Mums and Stories. Chitra as a mum is inspiring and equally fascinating is her determination to help others. Chitra can be reached at firstname.lastname@example.org