The worry is constant. The planning never ends. Is it ever enough? Will the crisis du jour be solved by bedtime? Are we there yet?
My eyes are focused on an end point in our autism journey which is ridiculous when I think about it. Like the job will ever be done! The autism is a part of him. I might as well be trying to end all of him if I try to end just a part of him. Some days it's really flipping hard. I got to allow myself the occasional pity party but also know when to put the fresh coat of lipstick and move on. I'm not sure when I will get to that final stage of acceptance. I just got to keep trying. We're not there yet.
There is so much he still can't do. I wonder if he will ever be able to do certain things. However, there are things he is doing now that I NEVER thought he could. Swim, bike riding, try new foods, and my personal favorite, have a temper tantrum versus a full on meltdown. Yep, that's right. I'm excited when he has a simple hissy fit. When I can just send him to his room to think about what he did and not have to worry if I have anymore spackle to patch up the soon to kicked in walls. A behavior that ends. Not one that just recharges itself in waves so it can go on and on. It doesn't happen all the time but it is slowly getting better. It's coming though but we're not there yet.
My eyes glaze over every time a new article comes out about the possible causes and treatments for autism and yet I still hover that mouse over the link to click. I never thought I would become so well versed in a language that some days I wish I did not have to speak. ABA, IEP, ESY, SPD, ASD, DSM and FBA etc. The simple act of reading yet another article can sometimes exhaust me to tears. I find myself slipping back into that newly diagnosed mother role and thinking "yes, this will be the one that explains it all." I haven't found that magical article yet. Have you? One of these days, I'll stop driving myself crazy with the should ofs, could ofs and would ofs but I'm not there yet.
When will I stop being angry? I'm angry a lot. I usually mask it with sarcasm but mainly because I know prison orange would look terrible with my skin tone and hair. Yes, sometimes I'm angry with autism even when I see the unique gifts and perspectives it gives my son. My neurology is different. It's just hard to understand fully and I resent that. I'm sure he's thinking the same about me. "Poor Mom. She just doesn't get it with her neurotypical brain." I'd like a day of no anger, of not having to explain him to world and the world to him. Forget tolerance! I just want plain damn acceptance. From the world and from my son. I want him to realize he's got to put up with some of our neurotypical requests and quirks. Just as much as we got to work and accommodate for him. We're not there yet.
I have said it before and I will say it again. Autism is the trip I didn't plan but I sure do love my tour guide. I follow his lead. Are we there yet kiddo? Am I a good travel buddy on this trip? Did I forget to pack anything? Sometimes I need to pull over at a rest stop for a break and a side of fries. You don't mind right? :-) We're almost there.