Deserving Respect

So many things are different now.

So many.

And though I know that parenting is a journey, and we learn from our early selves and fine-tune our methods as the years progress, that we make many mistakes, and that sometimes mistakes need to be made for us to learn and grow – but that doesn’t lessen the guilt or heartache that I wish I had known then what I know better now.

That as important as it is to teach Lil D how to do things he doesn’t very well want to do, or navigate situations he doesn’t want to navigate or put up with things he doesn’t want to put up with (because that is part of learning to live an independent life), it’s also important to try and understand and accomodate what he is feeling, experiencing, wanting, thinking, needing and not needing. And it’s important to try and respect those things – respect him.

Why are you beating yourself up, you might ask? Because this is my child who cannot communicate, who cannot explain himself or tell me why he behaves the way he does or why he does the thousand things he does. Why he sometimes completely loses it in the car and drops to the floor to squeeze himself into a tiny narrow spot where our feet go, and at other times he rides calmly and comfortably.  Why he continues to take one thing out of a drawer and then drop it in another, slamming one drawer after another in a daily audio dance that can drive me bonkers. Why any glass or cup he finds must be thrown into the sink. Why he craves spinning beads.

Why sometimes he completely flips a switch and has meltdowns with head banging, self-injury and massive  tears, cries and screams. Why he can sometimes eat his whole meal in one sitting with the family and other times he takes a bite, gets up and walks away, then comes back and takes another bite. Why brushing his teeth causes him major distress. Why he sometimes he bangs his head on any hard surface and then looks to us for a reaction. Why sometimes he can go shopping with us and handle the situation fairly well, and at other times he goes into sensory overload and completely loses it.

So many whys. So many minutes upon hours upon days upon weeks upon month upon years spent trying to figure out the whys and trying to figure out how to help break down the triggers that would set him off, how to push him to do things that he doesn’t want to do because we all have to do things we don’t want to do, and when to retreat and honor what he cannot handle.

And above all, through all of the back and forth, through understanding and misunderstanding Lil D, trying to always respect his dignity and his choice – something I have failed at in the past.

And so I pray, ya Allah, for forgiveness.

And I pray, ya Allah, to be shown the way.

And I pray, ya Allah, to make the right choices and advocate for him in the best way and prepare him for the world as much as prepare the world for him.

These prayers came rushing to me this morning when I read this piece from Kitt McKenzie, who writes at “AutisticChick.” She was writing about what she saw happen to a nonverbal autistic friend on group outing to a gym. Go ahead. Read it. I’ll wait for you.

This is the part that stood out:

“I saw that nobody was asking themselves how he might feel. I didn’t just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.

I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, “He’s having a little fit.”

No. That’s not what I saw.

I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water.

I saw a hasty and disjointed “rescue” that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. 

They saw a fit.

They didn’t see what I saw.”

And then this:

“Sometimes people underestimate what it means to acknowledge someone’s humanity. To see it. I don’t know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.”

What is the function of the behavior? A question I’ve heard a million times from therapists, teachers, aides, home therapists and myself during the past 11 years of Lil D’s autism journey. A question I muse upon here. Sometimes I know, sometimes I don’t.

But what I do know is that Lil D is human. And all humans deserve respect — to have, as AutisticChick so very necessarily reminds us, their humanity acknowledged.