Straight From the Heart of a Parent of an Autistic Adult
‘What after me?’ took on a different connotation for me recently.
A simple conversation with this wonderful family, took a turn, suddenly.
I have worked with them for more than a decade.
We’ve systematically worked at remediating core deficits of autism their son (now an adult). This young man has shown good progress and dynamic thinking in the last few years.
As we discussed what else needed to be in place, for him to become independent, the father shared a deep insight with me.
He had created this document addressed to: The person who takes care of my son after me.
The document had a detailed description of such as PAN card, Adhaar card, disability certificate etc.
Then it went into more details about financial documents etc
Further elaborated by food and living habits, medication, clothing, work out regime, personal hygiene, recreation and gainful engagement.
The elaborately put down basic living habits touched my heart. He has developed a habit of not dressing / undressing when people are around, so this has to be insisted on without exception.
This line made me cry: He sometimes cannot discriminate between stale and fresh food. Make sure you taste the food before giving it to him.
Only a parent can think like this. Only a parent loves a child (irrespective of his age), like this.
This loving father values his son’s dignity.
Luckily, that particular day, my internet wasn’t functional. So instead of our regular zoom call, we had a whats app audio call.
For once I was glad that my face was not visible, with the tears running down my cheeks. I wish my voice didn’t shake too much…
The tears were for his family, for mine and for all parents who struggle with the question, ‘After us, what?’
In those moments, a few painful truths hit home.
The Reality of Life
Some children and adults will need life long support.
B. If it is important, then go after it with a vengeance. Leave not stone unturned. Do your best. And don’t give up.
After you’ve done your best, let it go.
Surrender your efforts to the Universe.
If you’re interested in an outline of this document, we’ll be happy to share it with you. Drop us an email at email@example.com
Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.