It can be a scary road.
I like to write about Billy's breakthroughs. I love to share our joy when he seems to meet one more challenge that his autism presents … and to try to illustrate how, when he does make progress, he still does that in an autistic way – and that's a beautiful thing. We've undoubtedly been blessed with some beautiful breakthroughs this year.
But it's not all beautiful. And it's certainly not all breakthroughs. Far from it.
It's really hard for me to write about the rough stuff. I struggle with the ethics of sharing his hardest moments. I debate whether talking about Billy's autistic challenges might give people outside our “special needs circle” the wrong impression of autism. After all, there's enough histrionic screeching about “autism epidemics” and such in the press.
But I'm not the press. And I do not speak for the entire community of parents of autistic kids. I speak for my child – when he's not able to do that for himself.
Which brings me to this week. We came back from our glorious vacation, experienced several communication breakthroughs – a couple of which I blogged about here.
And then Billy got sick.
Just a plain old summer cold with fever and sore throat. But for an autistic child who is still making the connection between cause and effect in terms of his own body, this is a very frightening things. In the middle of the night, when he could sleep, he would wake up screaming, “What is HAPPENING to me?”
At least he can ask that now. But I'll be honest: That's one of the few functional things he's been able to say in the past few days. Mostly, we've heard non-stop scripting, crying and, inexplicably, the occasional fire engine sound. (FYI, it's eerie how realistically he can emulate that sound. And that's not something you want to wake to, coming through your baby monitor at 2 a.m.)
It's depressing on a well-rested day to see even temporary regression. But go a couple of nights with no sleep, struggling to calm your terrified, sick child, and it's the recipe for a pretty black mood.
However, last night was better. We discovered that he had an ulcer on his tongue (probably caused by the fever) and once we treated that, he slept a lot better. So did I.
Now I can look at things a lot more practically. This is temporary. The weird, wacky, wonderful road of progress along the spectrum is definitely not a straight route. It takes strange turns. It can trip you up. Sometimes it may be hard to tell if you're getting anywhere.
But as the late, great Buddy Hackett once told me (remind me to tell you THAT odd story one day), “When you get to my age, sweetheart, you realize that the journey is the destination.”
So let's keep moving, OK? If you let me lean on you this week, I promise to stop and pick you up when you need a lift.
Mr
Tuesday March 13 2012 09:24:33 pm
shark navigator lift away
Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
Tuesday October 11 2011 09:50:28 pm
pellet plant
Do not worry.Tomorrow will be better?
Sorry to Hear that Billy Is Sick
Thursday July 14 2011 12:24:25 am
Cheryl D.
I hope he feels better soon!
I wish the journey was always going forward, but it doesn't always! With my daughter, she sometimes goes into reverse even when she isn't sick! It's very discouraging!
Mama Said, Mama Said
Wednesday July 13 2011 07:32:30 pm
Ashley
My mom always sings, "Mama said there'd be days like this. There'd be days like this, mama said." I don't know if she had these kinda days in mind and sometimes I wanna smack something when she sings it, but nevertheless here we are. Sorry you guys have had a rough week. There's not many words of wisdom I can offer that you haven't already heard. Sending happy thoughts, prayers, and virtual hugs your way! Oh, and I can't wait to hear the Buddy Hackett story! =)
Snippets 'N Stuff
Wednesday July 13 2011 02:09:19 pm
DeeAnn Lancaster
I have never heard of an ulcer on the tongue. Ouch!
I hope Billy feels better soon and YOU get some sleep.
Total 5 comments