autism

059 The Biggest Worry of Caregivers

What’ll happen to my child after I pass on?

The worry of leaving behind a child who may not survive alone in the outside world weighs heavily on the minds of parents with special needs children. I have the same worry. My elder son Kyan, aged fifteen, is diagnosed with ASD (Autistic Spectrum Disorder) and dyspraxia.

Last Sunday, I read in the papers about a seventy-two-year-old father Clement, who is the sole caregiver of his forty-three-year-old son Conrad, making preparation for his son’s life in the event that he passes on.

Source: The Straits Times on 31st March 2019.

Clement has arranged for his son to live away from home twice a week in a facility to prepare him for a future without his father. And he has prepared the legal papers to have someone appointed as Conrad’s caregiver after he passes on. But even after these measures have been put in place, the father’s lingering wish is, “Whoever we take care of should go before us.”

Clement’s words speak volumes of parents’ anxiety. We fear that our child cannot fend for himself or herself. We fear that no one else knows or cares for our child as much as we do. And we fear that even the best-laid plan is not foolproof to keep our child safe. Despite our best efforts to prepare our child for tomorrow, how the child will survive without us remains our biggest worry.

Do not lose sight of yourself

For a long time, I put that biggest worry on the back burner. Over the years, there was just too much on the plate already:

When will my child talk? Will he ever make eye-contact? How to toilet train him? Does he know what to do in class and during recess? Will he wander out of the school when nobody is watching? Can he cope with his school work? How much does he understand what is going on? Why is he getting sick so often? Why is he sleeping so little? How to deal with his meltdowns when he grows older? Will he be employable after he completes schooling at 18?

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This list of worries goes on and on. Caregiving can be both physically and emotionally exhausting. The years went past so fast in the blink of an eye. In the rush to do everything we could for our children, parents easily lose sight of themselves.

Many caregivers live in constant stress and fatigue, thus aging very quickly. Sometimes when I meet parents who look tired, I would think of myself in the past. I am tempted to say, “Do not be a burning candle to light up your child’s life. Be the sun in their life.”

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Try to outlive your child

Sun emits energy. And energy comes from inner strength. In retrospect, the single most important lesson I wish to tell everyone is to live a life filled with energy. Aim to live happier, better and longer!

My friends know that I became totally withdrawn from social life for thirteen years. It was only two years ago that it dawned onto me that I must learn to take care of myself first. Since then, I have made the switch to place priority on taking care of myself better. I changed my dietary habits and physical exercise routine, sought balance in work and family, and made efforts to enjoy what I do to the fullest.

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These changes have given me the composure to do more for my parents, spouse and children. And friends fit in well in this new-found formula where I draw strength, inspiration and support.

Rather than worrying about that fateful day when I can no longer be there for our children, I made an audacious goal to outlive my children. Try to live till 💯! Just this belief alone gives me strength to do things that I used to think not possible.

You should give it a try too!

William W K Tan

5 April 2019

To read more about Clement and his son, click the link below:

Inclusive society makes caregivers’ task easier

https://www.straitstimes.com/singapore/inclusive-society-makes-caregivers-task-easier?xtor=CS3-18&utm_source=STiPhone&utm_medium=share&utm_term=2019-04-01%208%3A04%3A41

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Categories: autism, Family

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