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

Hard Truths that Demand to be Lived With

Ali Family Autism Truths #10 – April 10, 2016 There was a big group of teenage boys out practicing lacrosse on the field today where I took D for his weekly Open Gym session, better known as The John Maloney Project. Young, strapping 14-17 year olds, from what I could guess, going through sprints and lacrosse formations. Healthy young men, calling out to each other, joking, listening to their coach, sweating and putting in a good practice. All the while… Read more

It’ll Never Be Enough

Ali Family Autism Truths #9 – April 9, 2016 The house is full of family tonight, with my sister-in-law and kids joining us for a late dinner. D’s used to his cousins in and out of the house, and finds his own spaces to chill when the human population of the home becomes too much. It used to be that life more or less revolved around D, his activities, his therapies, his needs and what he could manage and could… Read more

To Sleep, Perchance to Dream. There’s the (Autistic) Rub

Ali Family Autism Truths #8 – April 8, 2016 At 5:30 a.m., my phone rang. Or rather, it vibrated on the nightstand next to my bed. When I woke out of deep sleep to its hum and grabbed it, bleary eyed, I saw that it was my mother-in-law, calling from downstairs (where their bedroom is). I began to panic. With my father-in-law home from the hospital seven days ago after his triple bypass surgery, and with them sleeping by themselves… Read more

Conversations with Daughter A: Laying Down Truths in School

Ali Family Autism Truths #7  April 7, 2016 Scene: In the car, today, after I picked up daughter A (who is 12 years old) from school then drove over to get D from his school. The following conversation ensued. It’s not word for word accurate, but pretty much spot on. A: So there are these two girls in my gym class, and I don’t mean to be mean about them but … Me: What? A: They’re saying stuff about another… Read more

It Takes a Village to Live this Autism Life

Ali Family Autism Truths #6 – April 6, 2016 In the span of three weeks, D’s two trusted, tried and true therapists/care givers both gave their notice. One took a different job in town and couldn’t fit after-school home therapy for D into his schedule anymore. The other took a job out of state and is moving on to new adventures. I hate seeing good therapists/care givers go, though I always wish them well. When we first started bringing therapists and caregivers… Read more

Somethings in Life Cannot be Fixed – They Can Only be Carried

Ali Family Autism Truths #5 – April 5, 2016 Somethings in life cannot be fixed. They can only be carried. I am not the originator of that profound and immense thought. I wish I was. Surely I have felt it in my soul numerous times. Like so many people, I have numerous articles and links saved in different places – on Facebook, on my computer, copy and pasted into a note in my phone, or cut out of magazines (yes,… Read more

A No Filters Life

Ali Family Autism Truths #4 – April 4, 2016 Two separate comments from autism families – one right here where I live and one across the world in India – kind of said it all today. From a dear friend, who has two sons with autism, both of whom have been D’s classmates over the years (pardon the language): Autism makes people bitter or burns off the bullshit. From a friend in India, whom I’ve gotten to know online over… Read more

The Spring Break that Wasn’t a Break

Ali Family Autism Truths #3, April 3, 2016 In a home full of kids (including my own and my visiting nieces), D and I may be the only ones who are happy Spring Break is over, and he (and everyone else) is headed back to school. Because when is a break really a break? A break from what? Autism? No. Like many on the spectrum, D has never been a fan of long breaks from school. A week is about… Read more

My Truth Lies with Him

April 2, 2016 – Ali Family Truths #2 The irony is not lost on me. Two years ago today, on World Autism Awareness Day, D was dealt such a blow to his health that my heart was irrevocably broken. We sat, waiting for him to wake from his anesthesia, waiting for the doctor to come out and tell us what he had found. The news was not good. Later that day, as I sat on our deck and watched D,… Read more

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