‘Tis the Season

I haven’t written a ‘Tis the Season blog in over four years because I was dazed by my autistic son’s puberty, seizures, and behaviors. But our situation with Josh has greatly improved. (Oh, how I hope I’m not tempting fate.) So I would especially like to thank my blessings this year and give praise to the phrase, “This Too Shall Pass.” I’m happy to say I’m grateful that:

1) Josh and I didn’t fall apart when his twin sister went off to college. (Okay, that’s a lie. I fell apart.) Josh is low-functioning and non-verbal but he has a very high EQ. He senses that his connection with “Sissy” is permanent and unconditional. I wanted her to go to school on another coast so she wouldn’t worry about him so excessively. Her fears wouldn’t be as immediate. But she didn’t fly away, she chose a college close by because after all it was her decision and not mine, etc. I’m secretly thrilled, (okay, not secretly) about her choice.

2) He’ not as aggressive. It could have been his meds, it could have been puberty, but whatever it was he’s not unkind to us anymore. The Dr. Jekyll and Mr. Hyde days are over. (For the most part.) Josh’s sweet, playful personality is back and we can take him out in the community again for extended periods. Especially to restaurants. I’d love to blame my weight gain on him but I’m pretty sure it’s all the cookies and candy I hide in my closet.

3) He still likes me. And not just because I’m Mom and he needs me. He recognized in some intuitive way that I couldn’t handle any extra trauma last year. He had most of his seizures safely at home rather than on the pavement at school. And I wasn’t as stressed when we just sat in his man cave/therapy room together and watched his favorite Teen Nick shows. Over and over and over again. I’ve memorized every single episode of Drake and Josh, Victorious, Zoey101, and iCarly that has ever been produced. I’m going to contact the network and tell them we deserve a frequent viewing card.

4) We have renewed hope about his epilepsy. He might not be a candidate for another brain surgery, but after two seizure labs and guidance from some exceptional neurologists we are exploring new avenues. We might even consider getting Josh a service dog. If our Alpha cat will allow it. Though I’m pretty sure I’ll be the designated dog walker when it’s 5 degrees outside.

5) I had Thanksgiving at my house again. Like other ASD parents I’ve experienced some painful holiday dinners. Two years ago I just leaned over at the table and broke down in front of my guests. All it took was a well-meaning comment from my mother. She had observed Josh going nuts for about two hours. “Shelley, if anyone can handle it honey, you can.” Um, no, not really. It had been an evening of Mr. Hyde. Josh circled the table shrieking, he knocked glasses over, and he chased after me with teeth bared. He took his therapy room apart and couldn’t self-calm. There wasn’t a single minute when everyone was together at the table at the same time. We had to take turns driving him around just so we could eat. At least it wasn’t like the year before when he set off my mother’s burglar alarm between bites of lime jello and green bean casserole. The police officer lectured him on her front lawn. “Son, we don’t set off alarms unless we have to.” (I didn’t tell him Josh had set off two fire alarms the week before.) “Do you understand me?” Um, no, not really. My kid couldn’t stop grinning and I was mortified. (God, how I wish aides worked on holidays.) But it’s okay. I finally learned about wine, and I am truly grateful. Good luck to all of you this holiday season, and may our new year be merry and bright!

Lizzie Borden, That Beach

Well, I made it here.  I love everything about the beach except for the salt, sand, and sun. The place is paid for though, through May. I’m going to take advantage of it, and lock myself inside, and work intensely, and not frolic in the ocean, and not take long walks in the sand. (Unless, of course, I’m looking for my marbles.)

Now, as far as taste and comfort are concerned I prefer historic homes, dark colors, and creepy corners. I don’t like light or airy anything. (Except for sundresses.)  I suffer from insomnia, dog ears, and acute photosensitivity. I lug my own linens and pillows with me everywhere I go because of my chemical sensitivities. I would much rather smell ten bowel movements than a bottle of powder-scented Tide. (Which is good because my son has bowel disease.) I bring a fan or noisemaker with me everywhere because it helps me sleep. And I hate anything coarse or scratchy, like percale sheets or designer shirt tags.

My arrival here last night was a bit coarse. When I pulled into the carport the first thing I did was look down and curse the ground. There were no stepping stones to the wooden staircase so I sloshed through the sandy muck in new sandals to reach the stairs. I shouldn’t have carried a suitcase, computer, and groceries all at the same time. When I finally found the correct key to enter the house I could tell immediately that the interior had been freshly painted.  “Oh my God,” I whispered out loud. “Shit!”  I could already feel a headache making its way into my skull. I flew with everything in my arms to the second floor.  It was hot and stubbornly cheery but at least it didn’t smell like Kilz.

Right now I’m writing from a boat-themed guest bedroom.  I can see out into the kitchen, which is conveniently located on this floor. It’s actually cozy and intimate up here despite the bright blues and greens. And I can hear the waves drone near my window.  I’m looking forward to an uneventful, well-rested, productive five days. And I won’t make the same mistake I did last night of turning on the TV before dinner.  It was set on Lifetime.  This didn’t bother me because I’ve never been interested in cheesy lady channels. But I didn’t change the station.

A program had just started about Lizzie Borden starring Christina Ricci. I like her, (Christina, not Lizzie) and I was certainly familiar with the grisly story.  I slowly became affixed to my multi-striped, bamboo chair. It’s odd because I hate blood and gore.  But I love history and good costuming, and Ricci was excellent.  Kind of like Wednesday Adams with an axe. I binged on five shows in a row. Five. I didn’t even get up to go to the bathroom, and I have a notoriously small bladder. I was ashamed of myself because I’d escaped to the beach to recharge and get creative. All I was doing was eating tortilla chips and applauding someone else’s bloody creativity.

When I went to bed last night I didn’t.  Maybe because I wasn’t sinking into a marshmallow hotel mattress with a room service menu on the nightstand. I was trying to sleep in a strange house with fifty bedrooms, after watching fifty episodes of Lizzie Borden. I was so skittish I had to leave the lights on. And when I actually did doze off I kept dreaming the impossible dream. You know, the nightmare kind where you can’t escape.

I was punished for my bad judgment when I woke up this morning to scalding light burning into my eyeballs.  Sunshine had managed to find my eyelids through the cracks of the plastic blinds.  Blind being the operative word. I stumbled into several walls trying to find the kitchen through the slits of my hands.  I finally found my sunglasses on the table. The kitchen was white-washed too.  Will I ever be able to work in this sunny, solar surround sound? You bet.