Monthly Archives: April 2014

Writing Notes

This afternoon, we had some friends over to play and things were a little dicey. Afternoon playdates are always dicey, because it’s a shitty time of day for most young kids and certainly for mine. But, as I mentioned yesterday, we’re having a hard time with some zesty behavior lately and I just sensed things simmering.

Eventually, the play date ended with me sending Mikey to his room to calm down and our friends scooting home. They had to make dinner anyway, but I felt sad that they left under such circumstances.

Hours later, when we were getting ready for bed, I saw some notes on Mikey’s bed. A lot of it seemed like random letters, but I suspected he might have had some plan in mind. When I asked, he told me all about it! He’d been writing notes the whole time he was in his room calming down.

My son was writing notes! Two-word phrases, like “No cars” and “big truck.” He doesn’t have access to tape up there, so he’d used his belt collection to strap the notes to the places he wanted them.

I think everything about that scenario is amazing. I mean, I’m a writer! My son used writing to sort out feelings, turned to writing when he had something to express, something important to remember. He used writing to label important things. I’m at a loss for words at how I feel describing his independent use of the written word.

I asked him if he’d write me a note tomorrow and he said he’d think about it.

The Honeymoon Has Ended

We’re just about a month into a spurt of behavior with Mikey that tells me either we got a bad, bad batch of pills or else we need to adjust his medication. He is a total wild man, maybe more wild than before the meds, but it’s hard to say because he was doing SO WELL for two months that I forgot what it was like to navigate a day with his raw self.

He wakes up every day at five, which is normal for him, but is having trouble falling asleep, even with melatonin. Sometimes he wakes up in the middle of the night, too. Insomnia is a big side effect of his medication–I’m not willing to get him on a prescribed sleep medication on top of it, so…

He’s also displaying signs of anxiety. He has always run a bit anxious, like his mother, but lately he’s been having terrible nightmares. They are anxious dreams, where his toys come to life and run away from him or else his suitcases blow out the window and all his professional clothes get driven over on the highway. It breaks my heart when he tells me he’s scared to go to sleep because he doesn’t want to have the bad dreams. He asks me how he can change the dreams or get the things to stop while he’s asleep. Anxiety is another side effect of the medication.

And, of course, even on the drugs he’s been aggressive at school this past month. I can no longer attribute the behaviors to staircase days stemming from overtired parents with no remaining patience just screaming at him all morning. No. There’s something else going on. It’s like the medication barely takes the edge off his impulsive behaviors anymore.

I looked at the pill bottle and we do get the generic. Another parent told me generic medications can vary by up to 30% (per cent of what? I have no idea), so this makes me wonder if we maybe did get a bad batch. Who’s to say the next batch will be a different one?

I’m in the state of exhausted tunnel vision where I can’t even make a phone call to schedule a consult with our doctor about it. I can’t figure out the logistics of how the hell I’d get some time without kids to go sit in the doctor’s office and have a conversation with him about Mikey. Which, of course, tells me I need to go to bed, even though it’s not yet 9pm.

When Mikey gets up in 8 hours, he’s not going to be a peaceful, drowsy boy. He’ll be more like a rabid raccoon…

It’s hard to rein in my feelings of disappointment and, to an extent, despair. I hardly dared allow myself to hope that medication could improve our lives, and then it DID! And we had two magical months where my kid was just challenging to parent instead of seemingly-impossible. And I let myself ease up and pretend things would always be this way. We made a plan to taper off and graduate from wrap-around services, for fuck’s sake.

So now I’m frustrated by all these layers of emotions and feeling really doubtful whether we’ll find resolution. Perhaps another thing that’s holding me back from actually going to talk with our doctor. Can’t we all just lie on the couch and eat soft pretzels?

Camp Grandma

My kids have been with their grandparents since Saturday. I’ve been home without any kids since Monday. It’s absolutely and utterly foreign. Maybe a bit unsettling? 

I drove the kids to my parents Saturday, stayed for a wedding shower for my cousin on Sunday, and then came back home for work and various medical appointments. My mom dropped the kids with Cody’s parents on Wednesday, and we’ll head toward Montgomery County late tonight to reunite and celebrate Seder with Cody’s family. 

We decided last minute to leave Alex behind, mostly because he just loves his brother so much and would certainly have missed him for a whole week and also because I haven’t really slept in 5 years and Cody reminded me the boys will be surrounded by love and I will be surrounded by sleep and relaxation. 

So far, it’s gone well. We get text messages with pictures of the kids driving Power Wheels, playing with goats, eating ice cream. We Facetime with them in the morning and witness our typical chaos from afar. But my goodness! I miss my babies. 

I can’t wait to cuddle them and referee their madness and knead Mikey like bread dough to calm him down. Tomorrow morning at 5am, when they run into our room, I’ll be so bleary and so, so happy. 

Today, though, I’m going to walk to the coffee shop for a mocha and finish listening to an audio book. Then I’m going to take a long, hot bath. All by myself.

Beef Rib BBQ

Mikey bought lunch on Wednesday (he is allowed to buy one day per week). He went to school bummed that his buying day wasn’t one where the school would serve ice cream for dessert, but he came home gushing about his lunch.

Not to me, of course. He called Cody on the phone and prattled on and on about his beef rib bbq sandwich. “I ate the WHOLE THING. And the wrapper was orange! And then I ate celery and drank chocolate milk.”

I just loved sitting there listening to him yabber on and on about his lunch. I find it hysterical that the orange wrapper on the sandwich was part of the appeal for him. His school has to bring in prepared meals because they don’t have a kitchen. Everything gets made in the district’s central kitchen and is then trucked over at lunch time. Not sure whether it gets microwaved at Mikey’s school or kept warm.

Either way, it all looks repulsive to me. Not so to Mikey! I suppose the next time we’re looking for something he’ll agree to consume, we should take him for a McRib?

Trying New Things

Anyone with a kid on the autism spectrum knows just how fun it can be to try new things with said kid. Something like preparing chicken in a new way can take hours of discussion, preparation, and post-meal analysis, so you can imagine how our weekend went when we tried TWO brand-new things with Mikey: took him to tae kwon do and his first major league baseball game.

I’ve been wanting to get him involved in martial arts for awhile. He’s an active little booger, his friends take some sort of martial arts classes, and I really feel like the routine of a class combined with (in my perception) the tight atmosphere of respect will be a good fit for him. His friend takes a class in Regent Square, but I don’t feel like driving 20 minutes after school and trying to wrangle Alex in the waiting room. I located the two studios closest to our house and went with the folks who had the better website.

I really like the studio so far–they do a 2-class trial period for $20 and Mikey gets to borrow a uniform. He loves uniforms! Cody took him to the Saturday morning class, but that was tricky because there were lots of people in and out for the classes before/after. Mikey was totally distracted. He also hates bare feet, and of course we neglected to discuss bare feet with him! That was a major sticking point.

When he started shutting down, the teacher sent another teacher over to work with Mikey privately over near Cody, which I think is so awesome. He learned a few moves and felt really cared for. The main teacher even suggested a different class on another day that would be less busy–I love that she picked up on things that were bothering Mikey and offered some solutions to help him have a good experience. So we’ll see how it goes on Wednesday! I haven’t heard about their fee structure yet. It might be a million dollars…but it might be worth it!

ImageAs for the baseball game, Cody got some tickets from work, so he took 2 man-friends and Mikey. I slacked a little mentally preparing Mikey for what a game is like, forgetting how afraid he is of costumed characters. Apparently he spent much of the time focused on the location of the Pirates parrot, worried he’d come up behind him and catch him unawares. He was also afraid the pierogie guys would come near him. I was excited that he was able to express that he doesn’t like costumed characters because he can’t see their faces and doesn’t know what they’re thinking!

We had explained that people would come shoot hot dogs out of a gun, but I think we sort of made it sound like everyone gets a hot dog, so he was apparently inconsolable that he didn’t get a hot dog. Cody bought him a consolation dog from a stand and then shared a milkshake with him, which helped. They made it about 3 innings. I think that’s pretty good!

So, Mikey had a packed weekend filled with new experiences. He didn’t have any meltdowns, so I’m chalking it up as a win. He also has been super behind on sleep lately, so any moment now I’m waiting for him to disintegrate. Maybe I can sneak him into bed at 6pm tonight in hopes he’ll catch up.

Excess Energy

The times of day when Mikey’s medication runs through his wee veins are pretty uneventful. In terms of Mikey, anyway. But Jesus! Before he takes it and once it wears off…it’s like we’ve gotten so used to the level behavior we’ve utterly forgotten how to cope with the insane, impulsive, dripping with distraction and electric energy behavior.

For the pas week, Alex has been really sick. We had him in the ER for croup. Our sleep has been super interrupted, so our reserves of patience are pretty empty. I don’t know if Mikey has actually been acting more like a hummingbird on meth or if it just feels that way because my head is pounding and my eyelids are propped open with toothpicks.

Man! Yesterday, it took 45 minutes of constant nagging and yelling and throbbing neck veins just to get him most of the way out of his pajamas. He still had one dirty sock on when it was time to leave for school, and by the time we got him all the way into his clothes, we were late.

I hate being late! I truly hate it. It makes me nervous and tense and so stinking uncomfortable. I was already feeling all those emotions after over an hour of trying to get my almost-five-year-old dressed. I wasn’t my best self that morning. I saw from the notes from his TSS that Mikey had a rough day at school, too.

Not surprising! How could someone have a good day when his day begins with getting yelled at by his parents for over an hour straight? I try to have compassion for his challenges, but I truly do not understand how or why it is just so un-possible for him to get himself dressed or undressed.

The afternoon brought more of the same in reverse after he got gravy on his shirt while not-eating meatloaf.

So, we’ve been having a trying week. I’m hopeful Alex’s health (and, thus, sleep) will continue to improve so ALL of us get the rest we need to be in Mikey’s family.