Special Needs Parents Here Is Your Answer To ‘What After I Am Gone’ Worry!


While cleaning a cupboard, I came across an old piece of news in the paper where a pilot father and an air-hostess mother died within a year of each other leaving their two kids orphaned. When the relatives only laid claim to the bank accounts and family property, the kids called their father’s friend, another pilot for help. This man took the children under his wings by taking the legal guardianship and now they are living with his family. What a story of loss, faith and humanity!

Being a parent my heart went out to the little kids who had to go through so much at this tender age, but this also shook me to the core thinking if this can happen to two healthy, working individuals in their early 30s then it can very well happen to me or to anyone else.

‘Death Is Inevitable’

We all have heard the quote ‘Death is inevitable‘ but we never think it can come this soon or can wipe away all that we’ve built over the years. The kids who we protect from every possible harm can be left to destiny and mercy of others. But what are our choices?

Being a parent of two adorable children; one who wants to explore the world and the other with special needs, the spectrum for us parents is extra huge. Yes, God forbid if something were to happen our typical children will find a way to bounce back sooner or later and we should be glad that they will. But they will also have the responsibility of their special sibling whether they are ready or not and we can’t deny the possibility that our extra special kiddos might never hold any gainful employment and may need financial assistance all their life.And as parents we need to make sure that we think of all these scenarios today to help them get back on their feet if and when the need arises.

I know it may sound weird but thousands of times I have tried selecting the right set of people from my family, friends and relatives who I could trust about taking care of my kids in case of an unfortunate incident. And I’ve always found it difficult to trust  anyone one hundred percent. but it is important that we prepare ourselves mentally for delegation of the most important responsibility of our lives.

There have been a few things that have made some sense to me while speaking to other parents and doing some research online and I would love to know if you have given any serious thoughts to these possible choices…

Writing A Letter Of Directions Or Intent 

Writing all about your savings, their maturity, the whereabouts of the documents, about someone who would work as a care taker till your typical child attains adulthood. This letter should most definitely also have a list of contact information for your child’s physicians, therapists, and other medical support people as well as current medications and their dosage. It should also include the medical history of your child, various medical interventions, allergies, food preferences and any or all information that might be important for the caretakers.

Write A Will

While a few of us might think that the will is only for multi billionaires, but the truth is  that in case of a tragic event, the family goes through the unimaginable and in absence of directions or a will it becomes extremely challenging for rest of the family to get back to the old life. A WILL will not only help you in making an informed choice well ahead of time but will also give the children the directions to move on.


Start A  Trust

A lot of parents of children with special needs start a trust for their children however there are many do’s and don’ts which parents need to ponder carefully before plunging into anything. Things like who they would want to be the trustee of the trust or if they would want a single trustee or a co-trustee or when and how money can be distributed to the children, should be thought out very carefully. There may be other considerations based on the state laws and regulations which needs to be researched too.

Apply For Guardianship

Once children turn 18, they’re considered adults in the eyes of the law. Many a times the adult in question is not capable of taking independent life decisions and may need your guidance. By applying for a legal guardianship you can maintain the same supervision and control you had over your child when he/she was younger. While still alive parents can approach National Trust for the same and they in turn can appoint a committee of members like a district collector, a doctor, a psychologist and others to look into the needs of the person in case of a sudden demise of parents.

Start Saving Early

Be it mutual funds, savings account, fixed deposits, shares  or any  other way which suits your future financial needs but it is extremely important to start early and not just for your child with special needs but for their siblings too. A lot of times we overlook the needs and demands of our ‘typical’ children assuming they don’t need us or can take care of themselves but when it comes to paying for their higher education and aspirations, we cannot NOT have the funds saying it all got used with their special sibling. So striking a fine balance between what is important for who is a decision every parent should very carefully make.


Making An Informed Choice

There was a recent video that was shared by another parent where an interesting experiment was initiated with a group of parents and their children. Children were asked to draw a picture of what they would like to become in future and the same question was asked from the parents from their perspective. Both were told not to interact with each other during the course of the activity. At the end of the experiment, the parents and children were asked to reveal their ideas. And to everyone’s surprise the pictures were completely contrasting.

This little experiment tells us all about the future challenges and how we need to be well prepared and encouraging for alternate careers that our children might choose . And it might not only be for our typical children. Our children with needs too need looking after longer than others and to be prepared in advance for the same is paramount.

Build Your Network

Building a network of friends for your child from the community is extremely important. The child should be taught to interact and be comfortable in the community, with the people who know and regularly interact with him. This can do wonders for your ‘after I am gone worry.’ The neighbours, the mall guy, the grocer, the ice-cream man, other special needs parents and even children at the park should interact socially with your child. Such connections not only build the self esteem of your child but also help him/her stay safe in case of no direct supervision.


Train Your Child

Every parent should train the child to be meaningfully engaged. This might not only be for financial independence but to stay engaged and have a routine.  This training and exposure should start early and the transition training should be provided along with pre vocation and vocational skills. A lot of adults with special needs are finding work, getting engaged in employment and also living semi independent lives either in group homes, with their parents or in assisted living set ups.

The parents should prepare their child for this life, for training them with all the household work and other important things that these children might need to live on their own with limited supervision. A few years ago a set of 5 parents came together and helped their daughters set up an independent house with a housekeeper. The arrangement was expensive but it paved a way for many similar social experiments. You can read more about it in one of my old post here…http://www.twominuteparenting.com/a-parent-of-child-with-down-syndrome/

The gist of all the pointers above is a sound financial planning. For the child’s aspirations and future whether typical or special needs, a parent needs to plan well ahead of times and explore all the available options. It could be child education policies, mutual funds or any other choice that deems fit. Researching, exploring, discussing, comparing and starting with your action plan will not only give you peace of mind but will also help you get over with your ever mounting worry of ‘What after me’.  So, Sit with your partner to know your goals, hire a planner or go research but be prepared and do your homework well in advance.

 Please don’t forget to share your opinion…




  1. Deepa, now there is a provision for appointing gaurdians even after 19 as per National Trust (For Autism. CP and Downs). Only thing not sure how it is working, and we need it reviewed. I had posted recently on fb and also written to the ex head of NT. Will revert after hearing from her

  2. We will not leave the burden to the sibling. They have their own life. We will leave along with the child when time comes.

    Once we decided this, we started living/enjoying the every moment of the life.

  3. thanks mam.Iam preident of parents association for mentally retarded childeren.The article is quite encoraging and eye opener for parents.yesterday there was news that a sales tax inspector from maharashtra killed his special child and commited sucide.now a days neither govt.nor socity wants to help as we are not votebankand such incidences are going to recur.only solution seems to be parents have to join togther and start some activity to keep the children busy even thogh it is nonremunrative.Any way thanks for the article

  4. Thanks Deepa for this very informative article. Deepa ji we are running a special school namely JSS ASHAKIRAN Special School at VPO Jahan Khela, Hoshiarpur serving around 200 children with intellectual disabilities.

    We have also started a unique project namely AASRA to take care of CWIDs in collaboration with parents of special children. We take care of special children above the age of 15 years till his last rites.

    For futher details feel free to contact me on my cell 7233000000 or email jssashakiran@gmail.com

    Paramjit Sachdeva

  5. Great inputs Deepa …..lovely article

  6. What a pretty lady u r! And an intelligent one too. Lovely article…very informative and well thought out.
    Glad I took the time to read it.

  7. Avatar Lakshmi P Sarma

    A well thought out ideas for such a situation.Though i toy with some of these ideas i have not put into action.Your article gives me courage to act.Thank you deepa. I am also a parent of a young man with Downs syndrome who has two older siblings.

    • Lakshmi, I am glad you found it good. As parents, there are issues which are like elephants in the room which we all see but don’t know what to do about. It was my small initiative to put the ideas together..I am happy it resonated with so many parents

  8. Avatar Lakshmi P Sarma

    A well thought out ideas. I am toying with some of these ideas in my mind but not put into action.Your article gives me courage to shape the ideas to action. Thank you very much for putting into print.Hope i could connect to like minded parents as a single person cannot execute this.Thank you.

  9. Hello Deepaben,
    The portion of article under sub heading “Train Your Child” brings to the front some core issues about training (preparing) the child. Indeed, that is a worry most parents of the special needs children face. Your message gets clear with the example and the link, but it remains confined to only a small number of parents. Thus it triggers a thought to seeking options and evolving ideas as to what else could be done. I think we can enhance the process by having a structured group ‘chat’ on the social media. Is it feasible?

    • Hi Atul, I would love to take part in any discussion that involves our children. If you happen to initiate something, I’ll try to make myself available. Thanks for writing.

  10. Loved this write up Deepa! Thanks for sharing these wonderful ideas! The focus should be on trying to help the child realise his or her full potential when one is alive.

    • Absolutely Sathya, that should be the focus of us all. If we give the right skills and the opportunities to our children, their journey, with or without us will surely be better! Thanks for writing

  11. Thanks for sharing yr thoughts, a more feasible n practical option could be that all parents come together and create a residential faculty for these children !

  12. thanks for this. very interesting. hope parents take note.regards

  13. Very useful ideas…. thanks a lot.

  14. Wonderful write up Deepa. This is a question of paramount importance to all parents and the article will surely set them thinking.

  15. Avatar Sonali Barshilia

    Thanks Deepa for posting this piece. It surely did jolt me up from the dream that death only happens to others. Siblings naturally are the best people to bank upon but unless we as parents in our lifetimes have trained the special needs child to be independent in conducting her own affairs and planned financial reserves for the typical one, we would be in the wrong to expect the world form the typical siblings. and you have brought these out beautifully. i also liked the idea of creating videos and picture books. these will go a long way in filling up the emotional gap.

    Lots of power to you girl keep going strong and raising issues that make us sit up and think

    • Sonali, You might not be aware but your generous words have more power than you are aware. Thanks for liking and appreciating my efforts. Lots of love to you and Tia…hugs

  16. hi deepa
    i am from an orgnisation Action For Autism. We bring out a journal Autism Network and were working on a piece on making a will and trust etc. then someone asked me to look at ‘Special Needs Parents Here Is Your Answer To ‘What After I Am Gone’ Worry!’
    love it!
    i am writing to ask if we may carry it in Autism Network. Dont see the point in reinventing the wheel. we will of course acknowledge your site http://www.twominuteparenting.com/ as the source.
    also just skimmed through the rest of your writings and love what you say and how you say it.
    look forward to hearing
    happy penning

    • Hi Merry,
      You don’t need to introduce yourself. You are an icon for all of us. And I’d be honoured if you’d like to carry this article in your journal. Sorry for replying late as I was travelling whole last week. Thanks again for writing. More power to you.

  17. Oh man…….looks like a serious plan. We may be missing some of the important aspects. Videos are nice ideas and Prayers to Jesus is even awesome. Thanks for the write Deepa.

  18. I’m not a religious person, so my plans are for this life, not some imaginary one on the clouds.
    The trouble with videos is that they lack tangibility – you cannot touch them.
    I have made quite a few photo-books of my son’s adventures, and at least these are physical and cannot be ignored.
    Ultimately our child’s siblings are very important – I also have a special child and a gifted one: my own life might pass, but in them I trust.

    • You have a point Rob.. Photo books are good. Irrespective of mediums the whole point is to prepare and equip our children and that can be done in a lot of ways. and Yes the siblings are extremely important and it is only imperative that we work on their relationship with each other ..thanks for writing:)

  19. I would add …. Make lots of videos for after the parents are gone. Videos should include past videos of time recorded together. A video that grown up children with special needs may understand better later. Parents should share what they like and enjoy and what they wish for their children.
    Explain in the video why you are not here anymore and why you chose whomever to care for them.

    As a Christian I would remind them that I will see them again in heaven and that they need to go to church and pray to Jesus and He will help them.

    I would also mention certain item that were special like maybe a familiar blanket, doll or toy. Talk about all the memories and that then they miss mommy and or daddy they can hold on to that item.

    Finally I would encourage them to help others and make a difference in the world. That they are to love others and help anyone who needs help.

    That is what I think!

    • These are beautiful ideas John. Thanks for sharing 🙂

    • Thanks for sharing your thoughts. I will definitely use some of your ideas. I really appreciate it!