Wednesday, May 31, 2023

Autism Answer: Hold Him This Way


Declyn and me

"Hold him this way," my mom suggested, holding my youngest son up in her arms, away from her body, while encouraging eye contact with her loving smiling eyes. 
He was little, in my memory not quite a year old, but we were noticing sensory stuff and lack of eye contact. We weren't worrying about it but we were noticing. And we were following his cues while hoping to help him feel our love. 
As Declyn grew, this sort of noticing and following and leading continued. 
He had a debilitating case of hyper empathy, any amount of uncomfortable energy could hurt him to the point of a meltdown. Meltdowns he chose to have alone, crying and talking to himself (or the people embroidered on his pillow) until he was alright. He got good at helping people sort out their feelings, which was a form of self-preservation. He had sensory issues that affected him in several ways: he vomited often, he was overstimulated often, he wanted to wrap his fingers in my wet hair often. 
In each case when I would notice, I would follow his lead and then attempt to help him make sense of what was going on for him and then lead him towards comfort - with himself and the world around him. 
Parenting Declyn was wonderful. We were close. We understood each other. We had deep conversations and shared our inner selves. 
At least, that's what I thought. 

Turns out, I was quite mistaken! 
Oh, we have always been close, but he (along with all of his brothers) hid so much from me. I knew them, but also I did not. 
But I am not wrong in remembering much of our closeness. Of how much Declyn impresses me and finds ways to connect and have fun with me. 
So this morning, in celebration of Declyn on his birthday, I roller skated and rocked out to the entire soundtrack for The Greatest Showman. Because that is a memory of our closeness.
Declyn and I love to sing our hearts out, loud and proud, proper pitch and right words be darned! When we are in a car together we are unstoppable! From blocks away you will hear us coming (and though you are not likely to say "what lovely singing voices" you hopefully will think "what passion and joy"). 
When Declyn's brother bought him The Greatest Showman soundtrack, after having taken us to see the movie in theaters, it was an all out oh man we love these feelings rock out fest. For months! We were almost addicted! 
I didn't think about it then, but today, as I rock and rolled, I recognized why so much of the music would hit hard for my youngest son. The lyrics, the dreams, the "this is me" declaration, these and more are deeply Declyn. 
So today, I'm holding him this way. 
Holding him up, remembering and reliving and feeling, while hoping he will feel my love. A love I am pushing out into the world with intense rocking out energy. Perhaps his hyper empathy will help him feel it: as far as Montreal, Quebec is from Fallbrook, California, I wouldn't put it past him. He feels things. 
And when I hold him this way, I feel them too. 
Happy twenty-third birthday to my darling Declyn!
I love you!!
Hugs, smiles, and love!!
If you want to rock out with me and Declyn, here's one of our favourites: 


Wednesday, May 3, 2023

Autism Answer: The Rash (or: Sensory Issues and Behaviors)


My brother at bowling, his face is red from a reaction to a snack

Randomly, and with no reason I can confidently get behind, I have patches of an incredibly itchy rash calling attention to themselves in a variety of places on my body. 
Aside from the part where I am (not very actively) attempting to identify the reason behind the rash, there is something else I am doing. 
Paying attention. Noticing how I feel and how it is affecting me. 
I love these opportunities. When my body hurts or itches; when my face calls attention to itself with blemishes, bruises, or welts; when I hurt or itch and it is calling attention to itself with blemishes, bruises, or welts - I like to notice how it influences my behavior and the behavior of folks around me. 
This rash, for example, feels sooooooooooo goooooooooood to scratch! I've had mosquito bites that feel good to scratch but this is something special! However, I am aware that it is generally a bad idea to scratch a rash, so I am trying to avoid thinking about it. I'm picking clothes specifically with the intention of not tickling it into awareness. I'm also choosing clothes meant to keep it from being seen. It isn't pretty, but more than that I don't want people consistently asking me about it or being concerned. 
There are more things I notice, but the point is my focus is on noticing. I try to take advantage of these opportunities to remember we are all living inside brains and bodies that behave in different ways, and we are all making choices that grow out of those different brains and bodies. 
It is a particularly helpful reminder for when my brother - who is unable to speak clearly - is doing seemingly odd things with his body: prodding the underside of his nose, smacking his thigh, rocking his head. I admit, when I was young and my mom would wonder, "Why is he doing that?" my thought would be, "Um, because he's weird." And, honestly, between you and me, I actually thought that was the answer. 
Luckily, my mom isn't so easily side tracked. She really wondered because, as I now understand, there is a reason and it can be helpful to know what that reason is. Following these clues doesn't always lead to knowing how to stop the behavior, how to fix the numbness or itch or pain, but it can. And it can lead to understanding it. And the attitude of knowing there is a reason leads to seeing the behavior differently; usually with less annoyance and more understanding. 
I won't fool myself into thinking now that I've had this rash I know what it's like to live in a body that has sensory sensitivities or a noticeable rash, I'm pretty sure mine will be temporary. Hence, I can take advantage of this opportunity from that privileged place. I am grateful to have these opportunities. 
I don't prefer pain or itching or attracting attention with bruises or blemishes, I don't wish I could keep them, but I do like attempting to understand how different my choices and beliefs would be if I did always or often have those things. 
Funnily: part of the reason I started to love the opportunity to notice and imagine is I prefer it over trying to figure things out or fix them. I am lazy that way. I'd rather have a rash or a pain and notice my behavior, assume the problem with solve itself, rather than focusing on figuring it out or fixing it. I like letting things happen and finding a way to be okay with them. That's easier for me. (It is not better, just easier. I have waited to the point of danger before.) This is something that, maybe, grew out of me spending this first half of my life in a brain and body that are fairly plain? Fairly middle of the road? This type of laziness probably grew out of me living in a body that, so far, has almost always figured itself out. 
I like that. 
I look forward to learning how to like it when my body changes and I do have to figure more things out. Hopefully all this noticing will help me have empathy (not sympathy) for myself.
Now, if you'll excuse me, I'm going to notice myself sneaking off into another room where no one will witness me scratching this rash and it will feel sooooooooo goooooooood...