Ali Family Autism Truths #8 – To be Known, Understood

April 8, 2015 – Autism Awareness Month, Ali Family Autism Truths #8

As I write this, you lie next to me, the sleepiness finally hitting you with gentle waves, silencing the sounds you make and bringing stillness to your ever-moving limbs. You watch me type, seeing the words flow on this screen, and I wonder if you’re reading what I’m writing. Maybe you can read. Maybe. There is so much I still don’t know about you, about all you may be able to do. If you are reading this, I wonder — are you ok with what I write? Because it’s such a heavy responsibility, to tell a story where the main person doesn’t express himself to the readers in ways they can easily understand.

But I understand. As much as I humanly can, I understand. God, I hope I understand you.

*****

I’m glancing back at you in the rear view mirror. Alhumdullilah, for once we left your grandparent’s house at the right time and traffic has not been a problem. The drive is smooth and fast, just you and me headed back home. It’s quiet in the car, and I think you like it like that. Unlike so many rides back and forth to your grandparents’ in the past year, you are relatively calm.

Maybe it’s that the absence of the rest of the family that sets you at ease. I admit, when we are all together, we are a fairly lively bunch. And that is sometimes hard for you, I think. Or, maybe (and I pray this is it) you are enjoying this one-on-one time with me. These periods of time are rare, when it’s just you and me. Maybe it’s one-on-one time that is making you feel calm and at ease.

In the quietness of the drive, my mind is jumbled with thoughts. I’m thinking ahead to the coming days, and it makes me so nervous, scared. It’s not that I haven’t trusted others to be with you, care for you, hang out with you before. We’ve done that plenty of times, and it’s usually gone pretty well. But what we’re about to do, it’s different then anything we’ve done before. Very different. And maybe I’m making too big a deal out of it, but the truth is that we cannot dictate to each other how we should feel.

We feel what we feel. You, me, all of us.

And the truth of it is, one of my greatest wishes is for your feelings to be known, understood.

*****

Atta mo — you say to me. Atta mo! First helping, second helping, third helping — you are asking me for more food. It makes me happy to see you enjoying your dinner, asking for more. I know you want more. I know that’s what you are saying. But would anyone else know that? We’ve tried so hard (and continue to try) to give you the tools to communicate your needs and wants in a way that others will understand. Others who are not us, not your family who haven’t spent years trying understand your every verbal approximation, every nonverbal form of communication, every gesture.

As we barrel towards the inevitable future, I have to believe the truth of your thoughts, your feelings, your needs and wants will be known. That your circle will widen more and more, and more people will understand you in ways that are meaningful and important. I have to believe that others will know, the way you and I know, that all that matters is the love and respect we show one another. All that matters is to try and truly understand one another.

It’s a truth you have taught me. It’s a truth I’m hoping you’ll teach everyone else.