28 May · Kamini Lakhani · 26 Comments
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.
Since Mohit is epileptic, he will require help with his daily medication etc.
Our aim is to give him the most independent life possible, one that is quality based and meaningful.
It’s better to accept this reality of life and plan accordingly.
The Fragility of life
No one knows what’s in store. The COVID pandemic has made this amply clear.
We’re here today, gone tomorrow.
Make today count. Make your child’s life (and your own) meaningful.
Focus on the things that matter. And let go of the things that don’t.
Give up things that don’t serve your child anymore.
For older students, work on functional academics. Please stop working on kiddie blocks, puzzles, colors and shapes.
Give them a means of communication. Whether it’s FC, a letter board, AAC.
And above all, work instead on the core deficits of ASD. This will ensure that you child thinks and makes decisions in day to day life.
Please treat and teach them respectfully.
Identify guardians
Who will take care of your child after you? Discuss with your other children and family members openly.
Many parents have come up with living arrangements for their children.
Here are a couple you could contact.
Ananda- Assisted Living for Adolescent and Adults with Developmental Disabilities http://www.autism-india.org/residence.php
Person in charge: Ms Merry Barua and team
A.L.A.P – Assisted Living for Autistic Persons
Alap.net.in
Person in charge: Ms Neena Wagh and team
Parents, all over the country are currently coming up with solutions to benefit our children.
(If you’d like to add about your organization, feel free to share in the Comments section)
Even with all these efforts, we still need to identify who will take care or be a legal guardian.
Do your work and let it go
I resonated with my own words, written a few years ago.
I guess I wrote them for myself.
A. Determine if it really important. Weigh it against the touchstone of the temporariness of life. Would this be important on the last day of your life?
If it is not important, let it go. Let it be.
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 saiconnections01@gmail.com
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Kamini Lakhani
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.
26 COMMENTS
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Thank you so much for the post Ma’am. While going through this I felt as if am reading my mind. Would love to have a outline of this document. Regards always.
Yours sincerely
Barnali.
Glad it resonated with you.
We’ll email the form.
Thanks and take care!
My son is 12,but it gave me a glimpse of what is more important.
Thankyou
Thank you Urooj.
Please send me the form and outline
Yes, surely will send the document.
Would like an email of the document, Kamini. This is the need of the hour. Thank you for sharing.
Thanks Renuka.
We’ll email it to you.
Hi
A very thoughtful. Document
Would love to read the whole
Please send
Thanks
Thank you Deepa.
We’ll send it soon.
What a beautifully expressed post!! I would really appreciate the outline of the document please.. Yes such worries are a real fact of ours and our child’s life, its a blessing to have such helpful information.
Thankyou
Glad you found it useful, Anuradha.
We’ll send it soon.
Thank you,
My son is 8.Would like to have an outline of the document
Yes, we’ll send it soon.
Thanks.
Thank you for this thought provoking article. Please share the outline with us. We have a 12 year autistic daughter. We have been thinking of this for the past few years.
Appreciate your contribution and support
Chandni
Thank you Chandini. Will definitely share
Please send document. Thankyou for sharing
My son is 8.7 years old. Pls send document
Yes, certainly Kavya.
My daughter is 6.6yrs, really need to read tis n plan for future.. Kindly share document outline..
Yes, certainly Vandana
Dear Kamini mam,
Only a parent esp. mother can write it. It’s heart touching. Actually, We parents can only take good care of them. What after us really haunts me, I always think how to teach my daughter to become an independent girl.
None of us can teach them the manipulation, many more things.
Our kids are the pure souls.
I am happy that parents need to understand and treat them as a respectable human beings.
This is one of the must read for all the parents of spectrum kids.
Thank you
Glad it resonated with you, Dr Rajni.
Thank you for your kind comment.
This thought that who will take care of him after me is grilling in my mind since years.. can easily relate to this . Thanks for sharing , would like to read more. My son is 12 with ASD.
Very good article
We are thinking about that and have come with plan of residential community for a group of 10 kids. Would love to read ur entire article
Very touching please share the outline of the document. My son 3.5 yrs was diagnosed recently and each day thoughts about his future is haunting me.