Got my Christmas Letter, huh?

I figured as much. Great. Nice to see you read to the end of what has to be the longest Christmas letter ever written. Kudos.

Regarding the content of said letter, I received a little gentle feedback before I mailed them out worried that it was a little too graphic, or perhaps slightly too detailed. Specifically regarding my son Alex’s self-abuse due to his special needs as an autistic child.

Well, I understand. I could have typed “Alex is having some issues, is a little fussy at times, or cranky” but that would have been watering it down tremendously. Really, this would not be conveying enough of what is a very real stressor in our lives. Plenty of our friends and families do not much know the world of an autistic person, let alone the upheaval and stress it can add to one’s life. In their defense, it’s usually because they haven’t yet visited with us (or vice versa) to see for themselves.

That’s why the detail is in there. Nothing more. It’s also just how I write. This blog is supposed to be a venue for me to post what I want to post. So I guess I’ll explain things here if I have to.

I just got off the phone with a very good friend of mine. He and his family were having a party this past weekend.  My family and I were invited.

We didn’t go, though. I told him it was because Alex had just gone through a medication adjustment and would be too “variable” to bring him to what was probably a riotous, boisterous, fun party. It likely would have overwhelmed my son. My wife and I would be double stressballs worrying about Alex spiraling out of control, hovering over him with concern, not catching up with all the other party attendees (the whole point of a good Christmas party) and, finally, forcing us to leave too soon after our arrival. How much fun is that? Answer- not much.

He asked about Alex. “How’s he doing? Is he talking yet? What do you mean he wears a helmet?” All good questions, yeah. So I answered him. He’s doing good–doing better than he ever has, really. But no, he’s not “verbal” yet, the occasional “dah-dee” and “hep-mee” (help me) aside.  And he wears a helmet because he sometimes engages in such rough bouts of self injury that he gives himself black eyes, body bruises and goose eggs on his noggin. We have to protect him from himself sometimes, so he occasionally wears what looks like a football helmet with a full face mask.  It’s definitely not normal outerwear for a hip 4 year old boy on the go. :: sarcasm implied ::  More explaining follows, an attempt by me to soften the jarring image of my son bouncing his head off of a concrete floor in the middle of a store, or park district playground, or friend’s Christmas party.

I can’t make this up. I wish I didn’t have to say any of this, either.

But I am working hard on not being ashamed to admit that my son suffers severely from his autism. So does his family. It’s gut-wrenching. No sound is more sickening than to hear your beloved, beautiful offspring deliberately hitting himself…that SMACK of hard fist on barely padded flesh. And the mournful, plaintive crying/whining that immediately follows.

I don’t get tired of explaining the nuts and bolts of why he wears it, how it tends to be a powerful, coercive behavior modifier, or what the other “protocols” are with its’ use. I just sigh a little knowing it’s a small bit of a handicap, a sign that says our little guy is demonstratively different than other 4 year olds, a hardship that my son and his family will deal with in one way or another for the rest of our lives.

In a way it just “is”. I work hard to accept that. But it’s not easy.

And if you’ve reached the end of this long passage, thanks.  I promise to write something a little more upbeat next time.  Maybe even a little shorter.

Feedback/comments always welcome, too.