I was honestly ready to turn over a new “stop whining so much, SHEESH” leaf, yesterday morning. I was. Monkey had been better the day before—I only kept him home another day to honor the “24 hours fever-free” rule—and was ready and excited to go to back to school. I was giving myself every pep talk in the book, in my head. It’s okay. It’s going to get better. Any progress is progress. Keep the faith. Etc.
And then Chickadee woke up with a fever of 102. So apparently that whole “Maybe he just has the flu on top of whatever else is going on” thing was true.
At the beep of the thermometer as it announced that yes, you’ve won YET ANOTHER SICK CHILD… it was the last straw, for me. Yesterday just plain sucked; I fell down the “we can’t catch a break, everyone is sick, nothing ever gets better, WOE IS ME AND MINE” rabbit hole and wallowed there all damn day. Quite thoroughly.
The various phone calls and emails didn’t help.
I finally got to talk to the pediatric neurologist; while his nurse had assured me that Monkey’s scans indicated a deep infection and that could “absolutely be responsible for his recent behavioral issues,” the neurologist told me in no uncertain terms that he believed we were looking at a chronic mastoiditis that may have been there for years. And he doesn’t think it has anything to do with anything.
He then went right back to the safe we-don’t-know-what-it-is-but-have-you-realized-your-child-is-autistic suggestion which all but makes me scream, at this point: He advised we take Monkey to see a psychiatrist. That was about the point where I lost my cool and said that was a SUPER idea, let me get RIGHT on that, oh wait, he’s already been under the care of a psychiatrist… for the last three years.
“What does the psychiatrist say?” He replied, unfazed by my obvious annoyance.
“He’s the one who referred us to YOU,” I answered, half expecting him to tell me there was a hole in the bucket in response.
“Oh,” he said. “Well, we can run some more tests….” He told me his nurse would call back with instructions.
In the meantime, the pediatrician called to discuss the impending referral to an ENT about the mastoiditis, and she, too, (very gently) reminded me that even high-functioning autism isn’t super well understood, and maybe this is just… Monkey.
“Look,” I said. “I get that there are sometimes idiopathic seizures with autism. I get that behavior changes. But I am telling you that over the course of two months he has become a different child. AND he had a seizure. And I am starting to feel like the guy in the Twilight Zone episode who’s screaming about the monster on the wing of the plane and NO ONE WILL LISTEN. It feels like everyone would like me to shut up and go away and I can’t do that. Something is wrong. I AM AWARE that he’s autistic. I am also painfully aware that this is a series of sudden, dramatic, and scary changes. Don’t tell me that if you were in my position you would just shrug and accept it. You would not.”
She told me that she “heard my frustration.” Which I think is doctor-speak for “please stop yelling at me, crazy lady.”
She promised to be in touch with the ENT appointment.
The neurologist’s office called back with instructions to take Monkey in for bloodwork that afternoon.
I had a three-way email exchange with the county coordinator for… I don’t even know what it’s called… family services, I guess, and Monkey’s no-longer-his-therapist. I have to go to a meeting and petition them for “behavioral support” to potentially get someone who knows what they’re doing to come work with Monkey here at home, which is really what he needs. Of course, I’ve already been informed that because we have private insurance they probably can’t help us. If we were indigent we could get their services for free! But we’re not, and the insurance won’t pay, so I’m not even sure why we’re doing this.
(Oh, that’s right. We’re doing this because my son periodically becomes convinced that people are trying to kill him. Silly me.)
Inbetween all of this I tended to a sick and floppy Chickadee and tried to do some work. Also I went to therapy, and must’ve looked really awesome because my therapist opened the door, took one look at me, and said, “Can I make you a cup of tea? You look like you need some tea.”
Eventually Monkey got home from school and I informed him that we needed to go across town to the lab, and he just lost. his. crap. To be fair: The poor kid has been poked and prodded and he’s been sick for a week and he really just wanted it all to stop. I don’t blame him. But on the other hand, do you think he was freaked out about having blood taken? No, Mr. Needles Are No Big Deal wasn’t concerned about that. He flipped out because I told him he was going to have to pee in a cup. Apparently THAT was not okay. He ranted for a good ten minutes about how that was JUST CRAZY and there was NO WAY.
Then I took him to the lab and made him pee in a cup, because I am a heartless monster.
That, of course, was upsetting enough that then he freaked out about the blood draw, too, and it didn’t help that they didn’t get it on the first stick and had to try again. I chattered on with as many soothing words as I could find, and smoothed his hair and told him how brave he was being, even as he scolded the techs that “you clearly have no idea what you’re doing” and “you must enjoy torturing little kids.” FUN!
Five tubes of blood later, that particular nightmare was over. I can hardly wait for them to call and let me know they didn’t find anything and HEY, BY THE WAY, DID YOU KNOW HE’S AUTISTIC and therefore you should shut up and accept anything out of the ordinary?
Otto has been sick for a few days (not as sick as the kids, but still), and Chickadee is miserable, and Monkey’s stomach is being torn up by the antibiotics he’s on, so last night I put the kids to bed and looked around and realized that OBVIOUSLY as soon as everyone else is better, I am going to get really sick.
This prompted a flurry of Christmas-present-wrapping which confused my darling husband, a little, but I explained between packages that if I didn’t pull everything out and deal with it now, chances were excellent I’d be in bed bemoaning my lack of foresight. (My fingers mistyped that as “foreskin,” just now. So far as I know I have NEVER bemoaned my lack of foreskin.)
I pulled things out of hiding in my closet and squared up piles of items and made sure I found everything I’d squirreled away in there over the months and then I did the worst wrapping job in the history of present wrapping on everything.
“You’re wrapping like ME,” Otto commented, watching me give up on squaring off ends and just kind of smash all of the paper down and beat it into submission with half a spool of tape.
“Yeah, well, desperate times and all that,” I answered, moving on to the next unfortunate bundle of crumpled paper. I wanted to add that it’s the thought that counts, meaning the fact that I thought to wrap everything before I got sick should totally get me some points, but whatever.
There may or may not be a giant LEGO set in one of those packages. I didn’t write HEY DID YOU KNOW YOU’RE AUTISTIC AND I LOVE THE SNOT OUT OF YOU? on it, but I’m not gonna lie—I was tempted.
Also, when Chickadee saw the stack this morning and asked if those presents were for them, I told her they were all for me. She blinked up at me, fever-bright and confused, and asked me if I’d spent the evening wrapping up gifts FOR MYSELF, and I told her I most certainly had, because that’s just the sort of person I am.
“Yay, Mama! Look at all that—you were good this year!” cheered Monkey, clearly delighted.
I had to laugh. Maybe this particular chapter of suck will turn out to be one of those “right regrets” I’m always talking about, after all.