Tuesday, May 30, 2017

A Cemetery Visit

There is a cemetery in our sleepy little town that Evan has been DYING to visit (his word, not mine). Today, with a little extra time on our hands after an early dismissal from school for a doctors appointment, I finally decided to stop.

The pictures relay the sentiment,

but they don't tell the story.

I'm not sure I can adequately tell the story either, as he was non-stop chatting about death, and dead people, and standing on dead people, and wondering about the current size of the baby that died in 1986. We discussed how married people are often buried together, and marveled over the number of military veterans and local firefighters. We talked about where I want to be buried, and how Evan wants to be burned, and he wondered where people are burned in this cemetery as he couldn't see any rules that said you cannot burn people. Yes, think of Darth Vader in Star Wars...this is the inspiration for Evan's cremation request, so I had to tell him that usually people are not burned out in the open, which disappointed him greatly. He also found some burial crypts in a small  hillside, which he thought were cool and caused him to re-think his cremation plans; I just can't decide, he told me with concern as we were leaving.

Once in the car, I asked him how he liked the cemetery. It was AWESOME, was how he replied.

While I'm happy that he enjoyed his visit with our local deceased, and I loved the quality time we spent in conversation (and watching him so closely inspect the stones and read off names), I was struck with sadness on our way home - made worse, I suppose, by the conversation I had just had with his neurologist who had helped me put in perspective what a "normal childhood" is and how to prioritize Evan's intervention...
                                                  ...here is my child, whose idea of an awesome adventure is walking through a cemetery, who will pass on playing with his peers 9 times out of 10 (and his family 8 times out of 10), but will happily commune with dead people. There are a thousand memes about the greatness of solitude, but only quote that captured a slice of what I'm feeling:
"One can acquire everything in solitude except character."
Solitude, to the extent that Evan seeks it, is not normal in childhood. How do kids learn to navigate the complexities of adult relationships? By engaging with their peers and not, as it turns out, with excessive time spent alone or with the dead. I know this, of course, but bridging that gap is a struggle.

So, stay tuned as I navigate a shift in our focus (because, I've learned the hard way that you - Evan, me, the family - can't do it all and there will be no return to the 5-6 days per week of therapy that we slowly backed down from, but the 0 days per week that we are currently at is not sustainable either). In the meantime, play dates at the cemetery will be welcomed ;)

Tuesday, May 9, 2017

Can We Ever Catch a Break?

Gosh, I don't know how other autism parents feel, but I'm feeling like we can never catch a break over here. Many don't realize how many body systems are affected by autism...if it's not sleep trouble, it's gut trouble, or it's being sick all the time, or it's managing anxiety, etc., etc. (and sometimes it's everything, all at once), so it's rare that we get more than a stretch of a couple of weeks of peace (or, in our case, everyone in school all day for a full week).

We survived April, which I dubbed "the month of irrational ridiculousness" for all the crazy shit that Evan came up with. We started last month with the great egg sandwich debacle, which I last blogged about, and ended the month with the me throwing away dirty pretzels and Evan screaming, "how can you do this to me! I just got off the bus and THIS is how you treat me?!!". A monthly theme for him in April was his big sister's "stench", which sounds funny but gets old fast, especially when he refused to be in the same room with her and often lost his appetite just by seeing her.


So, enter May and seasonal allergies galore. Because, after all, it's always something. Evan has very bad allergies and has had irritated eyes for weeks. Unfortunately, he somehow ended up with a large corneal abrasion on his left eye and is now even more miserable. Poor kid...imagine a sensory processing disorder on top of itchy eyes, and I guess it's not too hard to figure out how this happened.

Here is a pic of our trip to the doctor today:

I had to call in my Mother-in-law to help get my oldest to the orthodontist today, then had to dismiss my middle one early from school in order to get her to dance early so I could get Evan to his appointment. Seriously, it's comical over here trying to manage, and that, I know, everyone with kids can appreciate.

Relentless Forward Progress. My motto, you might remember from many blogs ago. Keep moving forward, until the next hiccup...then move forward again.