All Too Aware

It’s easy to feel jaded about Autism Awareness Month when your child is 21. It’s redundant. You’ve lived, breathed, and been consumed by autism for years, so when your special month rolls around you just feel numb. At least that’s what you tell yourself.

I’ve dodged the blue lightbulbs and puzzle pieces for a while now. I celebrate new research, but eschew the activities that accompany this special time of year. It reminds me of Christmas. Some people are gleeful when it finally arrives, others are depressed or feel pressured to enjoy it.

I’m crazy about my son just not about awareness month. I thought I would remain indifferent about all of it until recently. I gave a TED talk a few weeks ago where I took material from a play I wrote in 2008 inspired by my child, and mashed it up with material from Driving Miss Daisy. The talk addressed racism, ableism, discrimination, empathy–The Other—and I presented it with three other actors. I had to stop performing the full-length years ago because it was emotionally draining. I knew I wouldn’t have a problem with this talk however, because it was short and similar to one I gave in 2010. Save for a brief monologue at the end.

I started writing the original play when my son was seven. We were busy “fixing” him at the time, and even though I was overwhelmed and insecure I had faith he would get better and lead a healthy, independent life. But I’ve learned to manage my expectations at this point. Josh is still severe. Without the benefit of a medical breakthrough, or a miraculous stem cell operation, or extreme advances in the way I pray, he won’t experience the life I’d envisioned. It never occurred to me how prescient my writing would be. Many of my fears about his future have come to fruition. I used to joke that I needed to live to a hundred to ensure his well-being and safety. Today I am just relieved and blessed that Josh is happy and he senses how much we love him.

I typically bring that love with me when I perform. On the evening of the talk, when it was nearing its end, it was finally time for my character to recite the final monologue. I had relaxed into the piece and started breathing. I looked away from the audience like I typically do to deliver the mother’s lines. She’s pretending to whisper to her young son, trying to guess what’s in his head. Suddenly, when I was looking down and speaking to this imaginary boy, every memory of Josh and his childhood exploded in my brain. Flashes, momentary eruptions, of Josh at the pool, Josh having a rage, Josh having a seizure, Josh at his work table, Josh in the bathtub, my husband and I fighting, my daughter swinging with him, me crying with him, me lying next to him in his car bed, Josh having an EEG, a blood transfusion, a brain surgery. I could feel my throat tightening and my eyes burning. I was used to channeling my son onstage but this was different. This mother was still craving normal.

Then the monologue was over. I had to tuck myself back in. I pressed my lips together for a minute so they wouldn’t quiver. I felt my nose running. After we took our bows I stepped offstage for a moment to release the pressure.

I was tired after the conference, but sometimes exhaustion bares secrets you’d rather not admit to yourself. It hurts that it doesn’t matter what day, week, or special month it is I still have the gnawing desire for my son to hug me back when I put my arms around him. I still wish he could tell me what he was thinking. “And I dream that one day he will look me in the eyes and say, I love you.” I am not indifferent or numb. The longing will always be there, and I’m all too aware of it.

My Daughter, I Will Miss You, But I’m Glad You’re Going Away

When my husband and I dropped our little girl off at sleep-away camp the first time, I remember lying next to her brother in his car bed gripped by something I hadn’t experienced before. My son wasn’t feeling it, my husband wasn’t feeling it, but there I lay, frozen, thawing out only from brief spasms of grief and its accompanying tears. Yes, it was that dramatic.

My son has special needs, and it took a long time for him to fall asleep that night. Finally, when I able to exit the room I called my mother, who had been a child therapist for several years. “Mom!” I wept, “Oh my God, what’s happening to me?” “It’s just separation anxiety, my darling. It will pass, trust me.” “No, no it won’t!”  My poor brain had conjured up too many images of creeping snakes and camp food dysentery to believe her. “She’s going to have a wonderful time without you–a fantastic time–and you will feel better knowing that.” A fantastic time without me? How counterintuitive.

My daughter had a fantastic time without me. And I did recover a few days after she left. Her lack of homesickness was refreshing. Of course, when I was eight-years-old and went away to summer camp I wasn’t homesick at all. I just missed my cat. And I was gone for a month, (a gift for both my mother and me). Still, my initial reaction to her departure concerned me. If I’m this bad off now how am I ever going to handle it when she goes off to college?

Not very well, actually. The day she left I hunkered down in a dark room with nothing but my sorrow and a huge box of Kleenex. The kind with lotion. After two days I called my mother. “Will this ever go away, Mom?” I can’t keep circling the cul-de-sac with a handful of Kleenex reviewing every wonderful thing she ever said or did for me.” “Yes, this too shall pass. You’ve officially cut the apron strings and it hurts a little.” My mother was right, the pain eventually subsided to the point where I could pass by my daughter’s room without sniffling. Getting her phone calls helped. Learning about what she was learning helped. So did remembering some of the things she’d said and done in the past that weren’t so angelic.

Now, it’s her junior year and she’s leaving soon to study abroad in Scotland. The holidays and last-minute logistics have kept me safely distracted from her departure. Predictably though, in the wee hours of the morning, it hit me that she was leaving. This time for six months. I assumed the frozen position once again when I realized she wouldn’t be a town away, or a city away, or a state away. She would be an ocean away. And even though we had “separated and individuated” when she went to college, I felt that familiar separation anxiety burning in my chest.

“Mom! She looks so young, and the city’s so big—will she be able to navigate it safely? What if it intimidates her? And it’s cold there—a wet cold– what if she gets sick?” My mother reminded me that when I went off to London 35 years ago for a post-graduate program—for a six-month program–I stayed there for almost two years. And when it was absolutely necessary to come home for my sister’s wedding, my friends had to pry me off of a column in Heathrow airport to get me on the plane.

I’m glad my daughter won’t arrive in cowboy boots the way I did so many years ago, but she might arrive with the same trepidation. Mine only lasted about a day or two. Of course I wasn’t leaving a boyfriend behind, or a twin brother, or a job working with special kids. I never worried about what was behind me, I just anticipated the adventures ahead. Thankfully, I kept most of them to myself. (Except a toga party that practically killed me. Running around in sheets with a bunch of drunken Brits in January was fun/dumb.) Good thing my mother had ESP. Extra Sensory Pneumonia. She always sensed when I needed her.

If my daughter needs me I’m only a phone call or FB message away. Yes, we are close, but I’m not going to visit her. Some parents do that. But this is her adventure. Her time to break free and experience a different culture, and to get perspective on her life. She’s routinely put others first. I told her, “Be selfish! This is your time. Study your books, but study what’s around you too. Eat pub grub. (But not haggis.) Enjoy bagpipe rock. (The Red Hot Chili Pipers’ version of Smoke on the Water is quite original.) Develop a brogue that Shrek would envy. Challenge yourself always, but have fun. And I quoted my late father, “These are your golden years, take advantage of them. Be a citizen of the world.” Her self-discovery will be invaluable, whether she listens to me or not.

I’m praying my excitement over her journey will supersede the burning tears I’m sure to shed at the airport, and on the way home, and in the cul-de-sac. And I will be calling my mother. “Doesn’t this ever ease up? What the hell is it going to be like when she gets married?” And my mother will say something like, “Yes, it hurts, but consider the alternative.” And she’ll be right. I will be blessed to miss my daughter. And blessed to know she’ll be having her own adventures, and learning the world her way. All that broadening should be enough to keep the tissues in the box.

 

*I wrote this a few weeks ago and never gave it to Jordan. But she’s doing just fine. And my eyes are dry.

‘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.