After Us… Then What?

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Aug 25, 2015

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My father died this month. He was 93 and he had lived a long and wonderful life. My mother passed away in 2008, and he was anxious to be reunited with her. More important, perhaps, his seven children were all settled and doing well. All of us have good jobs, our own homes, our own families. Dad left this world knowing his work was done. There was no one still depending upon him and nothing left unfinished.

That’s how it is supposed to be at 93. The last thing you should be worrying about in old age is your children and how they will cope after you’ve gone.

Unless, of course, your child has a disability.

Parents of children with special needs worry constantly. It begins soon after we get the diagnosis and it continues for as long as we live. We worry about the diagnosis: Maybe it’s not actually autism? We worry about getting the right medical care, especially if we live in a small town in India. We worry about education: Will there be a school that will accept him? We worry about social life: Will she ever make friends? We worry about money: Our child has all the same needs as any other (food, clothes, shoes, books, toys) and a whole bunch more (therapy, wheelchairs, operations, a special diet).

And then we start to worry about the future. That’s where I am now. Although at 57, I am still fit and strong, I can already see a change in my stamina and my ability to lift my daughter Moy Moy. My husband, who is 12 years my senior, gets exhausted giving her a bath or getting her dressed. How will we cope when I am 70 and he is 82?

But the real worry is the one nobody wants to think about. It’s the question that keeps parents like us awake at night and haunts us during the day: What happens to Moy Moy after we die? Who will love her the way we do? Who will make her the centre of their lives?

In developed countries with good social services in place, this question is as difficult emotionally for parents as it is in India. No institution can ever replace a family, and no parent would ever prefer placing a child in the care of the state. But at least it’s an option. And as difficult as it might be for a family to take the step, they can do so knowing that their child will at least be looked after well physically. Systems exist.

In India, we have to be far more creative, resourceful, and self-reliant. Whatever solutions we come up with for “After us, then what?” are going to be the ones we fashion ourselves. Understanding and accepting that is key to moving forward in a purposeful, rewarding, and positive way.

To me, that’s the exciting thing about living in a country where strong relationships, forged over a lifetime, are still the norm; where people are still accustomed to finding their own answers and doing things for themselves and their families, and where people will still go to extraordinary lengths to take care of others.

Keep that in mind as you begin to think about the future for your child with special needs.

The first thing I tell young parents just beginning on the disability journey is this: Get over the idea that you have to do this alone. You are reading this online and like it or not, that in itself is an indicator of the kind of conditioning and training you’ve endured. You’ve been taught to value independence and self-reliance, and it’s quite likely that you don’t feel comfortable asking anyone else for help. Get over that.

The most important thing I have learned from my life with Moy Moy is how interconnected we all are and how essential it is to depend upon each other. Disability is for life and life is a long time. You and your child will need all the help you can get, and, believe me, people really do want to help.

The second thing is this: The future starts now. Plan with your child for his or her life without you, starting today. Plan creatively, systematically and intelligently:

  1. Involve your child in a wide range of activities and encourage her to do things without you from an early age. Help her understand that other adults can take care of her as well as you can. Remind yourself that she needs a break from you as much as you need one from her.
  2. Prepare your child from an early age for adulthood. Talk to him about it openly and enthusiastically. Find out what his dreams are; talk about his fears and his worries. Help him to be an integral part in making whatever decisions need to be made and respect his opinions, preferences, and feelings.
  3. Cultivate younger friends and make this a lifelong habit. As you start to age, they will still be in their prime. They will have the energy to enjoy your adult child with disability and to include her in their activities.
  4. Build strong, respectful relationships with the caregivers in your life. Acknowledge that you need their time and skill as much as they need the salary you offer.
  5. Connect with other families in the same situation and help your children become good friends with each other. Trade ideas, share stories, take turns hosting sleepovers.
  6. Consider pooling resources to create a group home which your adult child can move into while you are still alive. Remember that if you wait until you die to make the transition, you won’t be there to support your child in this wonderful step toward independence and freedom.
  7. Remember that, like my Dad, you will die one day. Preparing for it is optional. Submitting to it is not.

Be happy. This is your life and it is a wonderful one. Be grateful and celebrate and you will be amazed at how many doors will open for you and for your child.

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Written By Jo Chopra

Jo Chopra McGowan is an American by birth and a writer by profession. She is a former criminal (peace movement/anti-abortion activist jailed in America on a dozen occasions), a mother of three, and has lived in India for the past 33 years with her Indian husband, saas, masiji and assorted other joint family-wallas.

She is a co-founder and director of the Latika Roy Foundation, a voluntary organization in Dehradun for children with disability. She also trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

See all articles by Jo
  1. Mamta

    very beautifully written Jo…straddles in its own unique way all all parents and all children…

    • Jo Chopra McGowan

      Thanks, Mamta! Actually, you are right. Anyone could go at any time. All parents should think about the future. (But still live in the moment!)

  2. Dr.Mousumi Bhaumik

    I have been hearing n reading this worry of Parents ever since I introduced self in the field since 1993. This worry also persists with parents of persons without disabilty. Despite witnessed so many options came up governmental n non governmental since then, to advice to choose any one is questionable yet.
    Days are not away what the author visualises or expects.
    Still we require sensitive friends, neighbours, neighbourhood and country men.
    Many disabled Persons are still proving after their parents death and struggling to cope with default relatives/siblings as foster parents.
    The days are not away….the days are not away..

  3. Siddhant

    Very well written Jo, practical insights and advice, haven’t seen these anywhere and hope this reaches and helps several parents of special needs children

    • Jo Chopra McGowan

      Thank you, Siddhant. I shared it on Facebook and it has been widely circulated by parents in touch with other parents – I think it’s one of those things we all think about a lot and need to talk about more.

  4. Richa

    Reading this article had me cried over and over and I read it almost thrice, that too while crying. Real life instances from others make one understand how important it is to think abt – “wat next, after u”, whether u r a parent of a child with special needs or not.

  5. Subru Bhat

    Dear Jo, Many thanks for the beautiful and to the point article. You have given a great guideline on life, whether one has a child with disability or not. Some of the points that you have made are universal. You are absolutely right: “Preparing for it is optional. Submitting to it is not”. All the Best, Subru

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