Ali Family Autism Truths #1 – Learning from Each Other

April 1, 2015 – Autism Awareness Month – Day One of Ali Family Autism Truths

D is sitting downstairs right now picking through his dinner, while one of his therapists, who is playing the care giver role, sits with him. I’ve kicked the rest of the family out for dinner, and I’m sitting upstairs keeping an ear out for any issues that may come up. Call this a dry run. Call this part of my hypervigilance in making sure he is cared for and supported in a manner that will be best for him. Next week is spring break, and the rest of the family is headed out of town to a wedding. I am staying back with D, as we decided as a family several years ago that subjecting D to large Indian weddings in cities far away from home was an exercise in stupidity.

So they’ll be going, and I’ll be staying back with D. But — and here’s the big part — I will be flying out and joining them for the weekend, leaving D behind in the care of two care givers, both of whom have worked closely with him as home therapists.

We’ve never done this before. It’s a first — to entrust the care of D (overnight) to someone other than family. It’s a big step. Big doesn’t begin to cover it. It’s a huge step. It scares me to my core. It’s something we have to try. It’s a truth I want to hide from, — that I will need to rely on others (who aren’t trusted family members) to help support and care for my son. It’s yet another milestone on our autism journey. I hate it. I accept it. I pray everything will go all right. I pray he will feel safe and comfortable. I pray he won’t feel abandoned by us.

Welcome to our autism truths.

April is Autism Awareness month (though I’d rather rename it Autism Acceptance or Autism Action month, because by GOD I hope we’re past the awareness stage of a developmental disability affecting 1:68), and I’ve resolved to post on this blog 30 days of our family’s autism truths. I do not speak for the entire autism community. Heck, I don’t even have the right to speak for my son, though I am probably the closest to him. But what I can do is offer the truths we have learned in our family as honestly as I can. I can keep it real.

I have a son, D, who is 14. Daughter A is 11, and youngest son H is 7. Happily married, and my in-laws live with me. We are pretty blessed in the amount of family support we have. I knew something was amiss with D very early on. He entered early intervention at the age of two and was officially diagnosed just as he turned three and just as I was about to give birth to A. Since then, we have never looked back. Well, ok. I have looked back. I have mourned. I have gone through the “what ifs” But as time as passed, it’s grown fainter and fainter. It’s about living in the day to day, the moment to moment – and facing the future.

D is awesome. He is simply awesome. He is an angel entrusted to us. He has taught me more than anyone I know. He is profoundly autistic and nonverbal, but not non-communicative. His is a story of challenge, ease, hardship, joy, pain, anxiety, love, frustration and beauty. His is a story unfinished, still to be written. His is a voice, a story that deserves to be heard. Our story deserves to be heard. And, by the time this month of sharing truths is done, if you have learned something, anything that spurs you to help have greater respect and acceptance and make life better for all those with autism spectrum disorder, well I’ll say alhumdullilah.

Maybe I’ll learn something, too. So let us begin.