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The Truth is, It’s Very Hard, This Autism Living

The Truth is, It’s Very Hard, This Autism Living

Last updated on: April 25, 2016 at 9:48 pm by Dilshad Ali

The Truth is, It’s Very Hard, This Autism Living 2016-04-25T21:48:42-04:00 Dilshad Ali

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Baba and his sons, walking at a local shopping mall.

Ali Family Autism Truths #25 – April 25, 2016

The goal is being as independent as possible. Not needing us, not needing support, as much as possible.

The premise of this makes me smile because in the culture we were brought up in (Indian, Muslim), the focus was on achieving success and living a good life but always being close to one’s family. The family unit should always stay together and rely on each other. The respect for one’s elders is tantamount in our family. Respect for elders, faith in God. The words in Urdu, our mother-tongue (though I’d argue that English is my mother tongue) are adab-qaida (manners and etiquette), usool (principles) and akhlaq (morals) – the traits that are coveted and desired and passed down from generation to generation.

My words for D are so very different. Yes, adab-qaida, usool and akhlaq are still very important to me and traits I am also trying to pass on to my kids. But things are so vastly different. The worries we have as parents, the things we focus on, the that consume our brain:

How do I teach him to get his own meals?

How do we get him to a point when he is fully independent in his self-care? (Bathing, etc.)

How do teach him to clean up after himself?

Will he ever live on his own (with support)?

How will he ever live anywhere other than home, with his love of Indian food and his own usools and habits?

My words for D are healthy. Happy. At peace. As independent as possible. Employed (whether in a job, any volunteer work, any respectable daily task).

Separated. From me.

That’s a hard one. Old school Indian mothers are notorious for keeping their sons, especially their first-born sons (or daughters) close. Joint family living was par for a course in the generation before me, and still pretty common in my generation. So, D being very close to us, very close to me — well, it’s quintessentially old-school Indian, I guess.

But the goal is space. Space between us. Less reliance of him on me for support and care giving, and me on him for my work and identity.

How will that ever be? Will my heart ever allow it? How can there ever be enough trust in the world to push him out into it? I’m thinking about this as I prepare for a trip that takes me out of town for several days. It’s not the first time I’ve gone away, nor will it be the last. But each time, as I prepare a dossier of information on D and the other children — their schedules, his meds, the support staff who filters in and out of our home, school information and a million other things — I wonder how this will all be.

It’s one thing to know a schedule and a routine. It’s another to know a person. The rest of the family of course knows D, but not like me. And yet, that has to happen. There has to be others who know D in ways like me, or in different ways so that I am the one left surprised, thinking – I never knew that about him.

The truth is, this all so very hard, this autism living — for D, for all of us who love him so. Beautiful, joyful, wonderful. Yes. And hard. Sometimes impossibly so. That’s all I got tonight.

Autism Awareness Month 2016

Ali Family Autism Truths

independent living skills

peace

self care

separation

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