I never really gave much thought to how long Autism would “stay around” when Marky was first diagnosed. It was something I think deep down, I hoped, would just go away. We threw ourselves into a higher gear, found all the services we could and did what we had to do.
Now, thinking back, I wonder if there was more we needed to do, more we should haver been preparing for and more that needed to be explained to us.
Autism wasn’t leaving , in fact, now at 18, Autism is harder in many ways and still, there is no rule book .
In his younger years, adventures were fun, swimming was an exercise he enjoyed, trying new things was acceptable and holding his hand to cross a street still “looked ok”
Now, he doesn’t want to leave the house, if a pool has a leaf in it, it is dirty , there are few things he wants to try or do and holding his hand to cross a street is still needed, but not as cute to watch or have to do.
I wonder how much covid has impacted him – is anxiety taking over from all he tries to process in his head?
I miss the days of his easy smiles and willingness to adventure. I miss the days that I felt I had more control.
I also realize now that autism is not going away. It is not going to get easier and I am not going to be able to fix this.
I also admit to myself when I am wide awake at 3 am that I do NOT know what I am doing, nor do I feel capable of all that lies ahead of me.
He needs me in so many ways, some in which I do not even know yet and I worry that it is too much for me to do at the same time as I worry about how to do it all.
Some days it is all so much for my brain, other days I try not to think- but that doesn’t last- because he needs me.
He needs me and this is my job, even on the days I don’t want it.
I am behind on one of the things needing to be done. One of the things I dread and thought maybe, we wouldn’t have to do. Silly me. Soon, we will have our innocent boy ,with the cutest mole on his cheek , served with papers. He will have no idea what any of it is, he also won’t fight it. Then we will stand in front of a judge and take away all of his rights. We will do this to protect him and to be sure no one can take advantage of him.
That should make me feel ok about it, right? No. it doesn’t and maybe that is why I am months behind in doing it?
Did I think he would wake up and all would just be ok or that I would figure out a way to do things differently ?
I am going to keep on having to do hard things and I will keep holding his hand when we cross the street.
Every day .