It’s Not “Just Autism”

Ali Family Autism Truths #20 – April 20, 2016 I pretty much don’t have to even write today’s Ali Family Autism Truths #20 (dude! Made it two-thirds of the way through!) – because my friend Nakia pretty much said it all today: I forgot yesterday’s autism fact because Zak went to bed on time in his own bed, so I was a little spooked. But here you go: most aspects of ‪#‎autism that neurotypical people focus on are the social aspects… Read more

Like Muslims, the Autism Community is Not a Monolith

Ali Family Autism Truths #19 – April 19, 2016 The morning started with a visit to yet another specialist today for D. The medical mysteries and questions keep a coming. Last year (2015) ended with a week-long hospital stay for D and some medical issues for which definitive answers still elude us. And this year is a continuation of the medical conundrums. There’s a contingency of the autism community for whom the mantra is: Autism is Medical. As in, if… Read more

On Block Formations and Autism Negativity

Ali Family Autism Truths #18 – April 18, 2016 More than twelve years ago, a series of evaluations and research had led us to a life changing moment: We sat in an office at Beth Israel Hospital in New York City, waiting for the head of the Behavior Developmental Pediatrics department to talk to us. She had done a series of evaluations on D and had consulted with his pediatrician and us. Soon, she ushered my husband, D and myself… Read more

D’s Declaration of Faith

Ali Family Autism Truths #17 – April 17, 2016 I harbor secret fantasies of chartering a private plane and taking D for Umrah – the lesser pilgrimage to Makkah done during non-Hajj times. My friend, Joohi Tahir, executive director of MUHSEN (Muslims Understanding and Helping Special Education Needs), wrote a post for me about two years ago about how she and her family performed the Umrah with their autistic daughter Mehreen. The story is simply beautiful: Every step of this… Read more

I Has High Expectations

I woke this morning and soon after read a blog post written by a friend, whom I have never met in person, but I consider her a friend. In a conversation she had with her autistic, nonverbal (but definitely not non communicative daughter) daughter via spelling on a letter board, her daughter said to her, “I HAS HIGH EXPECTATIONS.” The conversation came following a difficult situation they had come through, and her daughter was expressing her frustration with herself because,… Read more

In Autism Land, Who Tells D’s Story?

Ali Family Autism Truths #15 – April 15, 2016 One of the dangers in chronicling D’s and our family’s autism journey is taking a story that is supposed to be about him and turning it into a story about us. Or me. I know that has happened one too many times over the years. Some of it is inevitable, given that instead of D writing or sharing his stories due to the profoundness of his autism, I’ve taken on that… Read more

A Lunchtime School Cafeteria Story

Ali Family Autism Truths #14 – April 14, 2016 Hey H, I said to my youngest this morning as the kids got ready for school, I’m going to see you later today at school! What for? He asked me. Did you forget? I’m on lunchroom duty today! Guess that means I have to finish all my lunch today, he quipped back at me. I love lunchroom duty days. Every class is assigned a week to provide parent volunteers in the… Read more

Not Living in the Past – Living for the Future

Ali Family Autism Truths #13 – April 13, 2016 When you’re picking up your kid from school and it’s taking a very long time for the teachers to bring him out. You think the worst. Because, experience. ‪#‎autism I posted that on Facebook while I sat in the car today nervously watching the minutes tick away, waiting for D to come out. It was taking a long time for his teachers to walk him to the car, and that was… Read more

Conversations with Son H – Where He Lays Down Truths

Ali Family Autism Truths #12 – April 12, 2016 Scene: At our kitchen table where eight-year-old H is doing his homework, and I am doing office work on my laptop: H: Hey Mamma? Me: Hey what? H: When did you know D bhai was autistic? Me: When he was very little. The doctor officially told us when he was three years old, but I knew a long time before that. H: Did you know when … Me: When what? H:… Read more

Why is Setting up a Village of Support so Difficult?

Ali Family Autism Truths #11 – April 11, 2016 As we wrapped up our monthly meeting, we pulled out our calendars to schedule our meeting for the next month. How about May 12? She asked me. No, I said. That’s my birthday. I don’t want to be depressed on my birthday. She laughed. Depressed? No, I’m serious, I said. Just consider this for a minute. We’re inclined, as humans, to try and live positively. No matter what is hard or… Read more

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