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.
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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
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.
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
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
http://www.jssashakiran.org
Paramjit Sachdeva
Great inputs Deepa .....lovely article
Thanks for writing Nita...
Great inputs Deepa .....lovely article
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.
Thanks Dear for your kind words :)
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
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.
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.