Living the Disability/Autism Life: Are We Really Being Seen?

Living the Disability/Autism Life: Are We Really Being Seen? April 3, 2017
Image source: Pixabay
Image source: Pixabay

This is Day Three of the Ali Family #AutismTruths – April 3, 2017. 

Dear Friends,

Today D and I stopped off at an ethnic grocery store that we frequent on our way home. When this store opened several years ago, I was excited because it was close to our home and stocked halal meat. As I got to know the owners, about a year later they told me (after seeing D with me) about their adult son, for whom the store is named.

Their son has several different disabilities, one of which I think is autism. I never asked them for specifics on his diagnosis, but just decided that their store would be the only one I’d ever frequent for our meat and ethnic groceries. Theirs was a small, struggling business that sometimes didn’t offer the best cuts of meats or have the best prices.

But they had named their store for their son, and they struggled to keep things moving forward between supporting him, growing the business and parenting their other son and daughter. Even though my friends would sometimes complain about the service or quality and wonder why I kept shopping there, I would tell them the story and encourage them to patronize the store.

Over the years, we grew to be friends, as I frequently stopped in on my way back from picking up D from school to buy his favorite “chocolate sandwich cookies” and other groceries. (They began stocking the cookies after I asked their daughter, who would work the check out, if they had them because they were D’s favorite.)

Their youngest son moved out and started college, and their older daughter took long trips to Bangladesh, eventually getting engaged and then married. Three years after the marriage they hosted a reception here in town and invited us. We were one of the only non-Bangladeshi families in attendance. We were so happy to see good things happen in their life, knowing full well the love and commitment they had to all their children.

During the time they were planning their daughter’s wedding reception, their disabled son sustained an injury from being improperly belted into the public van he took to his adult day services facility. I felt their pain acutely, seeing our family in theirs. We visited their son in the hospital, and I accompanied the mother to a lawyer’s office to see what their options were in this situation.

There was a moment in the parking lot of their store during this time when she and I stood outside my car and talked about how difficult it is sometimes to do all that we want to do for our children. With tears in her eyes, she told me how hard it was to plan the reception for her daughter, when her heart was broken at seeing their son in the hospital. She told me how her daughter wanted to cancel the reception because her brother was unable to attend, but how they had decided to go ahead with the function.

I want to there for A*, but I also want to do everything that will help my other children and secure their happiness too. I feel like I’m never enough for all three of them, she said to me.

I know, I told her.  I really understand. I feel the same way many, many times. Listen – there is nothing wrong in you being happy for one child even when another is suffering or having a difficult time. Allah knows. He knows, and that’s all that matters.

Today D and I stopped at their store, and the dad was manning the check-out counter. He told me they had sold the business, and this would be their last month.

It is too difficult caring for A and running this business, he told me. There is too much tension. Last month my wife went to Bangladesh for a month, and I cared for A and looked after the store. It was too hard. We haven’t traveled together back home for 15 years. Either she goes, or I go. I want to take care of A and not be bothered by anything else.

I know you have been loyal to this store and to us, and I know why, he told me. All the other customers come here and then go to other grocery stores. Too much competition. We cannot keep up. Now, you, too, can shop wherever you want!

I told him, I don’t want to shop anywhere else. But I understand. Insha’Allah this will be good for your family. May Allah make it easy for you all. This will be good.

My dear friends – are you still with me? I tell you this story to ask of ourselves – how well do we really know each other? Ultimately our local community cannot take up the full responsibility of caring for this family’s son or managing other aspects of their disability living. But there is a lot we can do for each other.

I’ve spent a lot of time being open and honest about our family’s way of living and D’s autism. And, it has affected some change within our local cultural and religious community. But, in 11 years of living here, not nearly enough change has occurred. The question, though, is – what is the change we want to see? What is the change we want to be?

Disability families are consumed by their disability (and/or autism) living – navigating supports, care, education, medical help, government supports and eking out a dignified way of living for their disabled loved ones, their other kids and themselves. And so, though I realize our communities cannot know how to help without some guidance – taking that responsibility upon ourselves as the ones who are autistic or disabled or supporting a loved one can be too much.

Ask yourself – how well do you know your neighbor? Your local business owner? Your friend, even?

What is the change you want to be?

Yours,

Dilshad

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