Dear Siblings – What is Your Role in our Family Autism Future?

This is Day 25 of the Ali Family #AutismTruths – April 25, 2017Dear A and H and other autism siblings,Last night I was at a training seminar to learn about how to apply for SSI (supplemental security income, a form of social security) benefits for your brother once he nears the age of 18. There are a lot of things we need to do for him in the coming year as he approaches the age of majority – SSI, consider guardianship (apply in court to become his guardian and figure out what kind of gua … [Read more...]

Piecing Together the Puzzle of the Future – As a Family

This is Day 24 of the Ali Family #AutismTruths – April 24, 2017Dear Family,I came home from a long medical appointment the other day and walked into the house. D and his Baba were sitting on the stairs – D behind his Baba, arms and legs wrapped around him. He was digging his chin into his Baba’s head, slapping him on the shoulders with his hands (rather hard) and literally covering him with the kind of affection you usually don’t see between a near-17-year-old and his Dad.As we are wo … [Read more...]

In Autism Land, Where Does Our Family Happiness Lie?

This is Day 10 of the Ali Family #AutismTruths – April 10, 2017.Dear Family:What does family togetherness mean to you? What does “having fun” as a family mean? Is it all of us together embarking on some new adventure, or some tried-and-true old favorite thing to do? Is it some of us doing things that are enjoyable while others stay home where they have a better shot of feeling more relaxed, less anxious and thereby happier?I’ve struggled with family outings for so long. We all have. T … [Read more...]

Dear Rock Star Autism Siblings – Five Pieces of Advice

This is Day Seven of the Ali Family #AutismTruths – April 7, 2017. This letter is written by 13-year-old "A," D's sister.Dear Rock Star Siblings,Hi! You might know me by the name of A – that’s what my mother likes to call me in her articles. I’m 13 years old, and I’m in eighth grade. I have two brothers, one who is nine and one who is nearly 17. My little brother is a hilarious goofball who never fails to make me laugh. He’s one of the biggest clowns I’ve ever met, and he has the most chi … [Read more...]

Which Truths Can be Shared, and Which can Only be Lived?

Which truths are we charged with sharing, and which truths must remain more quiet for the sake of the greater picture or, more importantly, one’s privacy?I was chatting with a friend today – someone I’ve “met” through my autism writing, who also writes extensively on autism, on life with her autistic son, on neurodiversity and other disability topics. I was telling her how difficult it is to lay one’s life bare and share intimate truths, day after day for 30 days.More so, what is difficul … [Read more...]

It’ll Never Be Enough

Ali Family Autism Truths #9 - April 9, 2016The 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 not. The rest of the children were much younger back then, and they didn’t have th … [Read more...]

A Diner Story in Autism Land

It was a quintessential New York corner diner – the hustle of waitresses bringing sandwiches, soups and other lunch and breakfast fair to mostly regular customers. Booths, tables with chairs and a diner counter where you could get what I thought was the best milkshake in New York City.Olympic Flame Diner, on W. 60th Street kitty-corner from then-Roosevelt Hospital – where D was born, where A would be born several months later.Back when D was a little over two years old, and I was, well I … [Read more...]