From which greyed hairs are borne

Last night Charlie split his foot open. Playing in the living room, doing “donkey kicks” off of furniture, he kicked something so hard the blunt force impact tore his flesh. Fortunately it looks like the wound was pretty ugly but not particularly terrible. It appears that he will be back on his feet and running out in a couple days.

When we left the house I thought he might be losing some toes.

One of the difficulties Charlie faces related to ASD is how sensory experiences work. Pain can be a strange beast from my perspective as his Dad. I think what happens is his brain experiences the pain signals correctly, but the later steps of emotionally processing that signal become mixed up. Sometimes massively painful things make him giggle. Other times minor discomfort makes him wale and moan.

I saw this with his split lip many years ago. He fell and hit his chin, bitting clean through his own face. During the stitching, the doctor noted that this giggling kid did not yet have any topical numbing. He will tell you it hurt, he experienced pain. But he laughed while the doctor was pushing a needle through his mouth. From the outside, the emotion the laughing showed was true. From the inside, he said it hurt a lot. Both are true.

His foot was split open and he was reporting a 10 out of 10 on the pain scale, but was calm. Then they applied a topical numbing gel to his wound. What should have reduced the pain seemed to increase his discomfort. Then came the nasal analgesia, an intranasal Fentanyl hit before the stitching began. This is where the problems really kicked into high gear.

Charlie was choking on this medication, it took him 6 or 7 attempts to complete the entire dosage. Then he sneezed quite a lot between attempts of getting the dosage in. The intranasal experience was enough trauma to experience for one day. He begged for “no more”, but we had to coax him to finishing so the doctor could sew him up. This was just a preview of the upcoming struggles.

Putting the stitches in his foot resulted in the type of screaming that rips a parents heart out and shreds it. There are few things in life that will make you feel as impotent and small as seeing your child suffering and being unable to end it. It went on and on. Mary jumped up and ran around to hold his top half while I grabbed his legs to try and give the doctor a stable subject to work on. My boy is strong and it took my everything to keep him from kicking the doctor and tearing his stitches.

In the end, she gave up and went to glue. I’ve never seen a doctor look so pale. She did finish some internal dissolving stitches and one ugly external stitch, but wrenching his foot tore the flesh and kept the needed 4th and 5th stitch from having a home. The glue should do what we need, it just needs a little more caution in the coming days.

I think there was a couple of mistakes made. The nurse administering the intranasal medication probably didn’t explain the difficulty Charlie had to the doctor. He might have been under-dosed. The doctor wanted to avoid putting Charlie under. Her thought was that it was better to get this family fixed up and back home so we could recuperate. The doctor was very young and I think she will make that type of decision a little differently in the future. And the nurse will probably err on the side of loquacity when discussing pre-procedure treatment to the attending physician.

And I never disclosed that Charlie is Autistic. I feel so much stigma about this. Not for judgement, but because I want to be careful about how this word is used around Charlie. I don’t want it to be an excuse for him. I don’t want it to engender pity. I want that word to liberate him, to let him understand himself in a way that brings freedom. I want the word to be his wings.

Boy I fucked that up last night. This trauma he experienced was created by a stacking of mistakes, and I have a big slice of the responsibility pie. I see my mistake so clearly in hindsight. Being autistic doesn’t mean you need special treatment, but it can mean you need different treatment that compliments who you are as an individual. The label only helps the medical practitioner make higher quality decisions.

This word, Autism, isn’t something I should be so damned afraid of. I should do a better job of internalizing the lessons I am trying to teach my son. Saying that word might have been just the liberation he needed. A reduction of his suffering last night. If I chose to disclose then it might have grown his plumage just a little more.

The normal male shoe size in the US is 10.5. You might also say a size 10 is “normal”. I wear a size 17. That is an “abnormal” shoe size.

“Normal” is a word I’ve been thinking about a lot this year. They call us neurotypical and neuroatypical. That’s still a fancy way of saying “normal” and “abnormal”. And I don’t agree with it. Not because I’m offended, but because I think it is using the word “normal” and “typical” in a way that the average English speaking human does not use it. We should call it for what it is, because normal doesn’t exist to real people.

Average. Middle of the distribution. Size 10.5 in the mens section of Payless.

The same way I cannot put on a size 12 shoe, Charlie can’t put on the average emotional and physical experiences for some things. Medical procedures are huge and scary, and average isn’t something that is going to work for him. As his advocate and biggest fan, disclosing that he is ASD is something I should have done.

At the end of it all, we got home and he has all of his toes. He even has a medical shoe, a mini-boot, to keep him from bending his toes. And now he says he feels like Curious George in that episode where George broke his foot.

Any time he is talking about George I know the world is okay. George is his happy place. George is our happy place. It means we made it through the storm.