April 2004


6.

Jessica comes back to bed and I get up to use the bathroom and to sneak another dose of cough syrup. I return to bed, where Courtney's just looking up at the ceiling.

She looks at me and again says, "Hiii Joooe." Jessica tells her, in a mock gruff voice, to go to sleep. The three of us lie quietly for a while, with Samantha sleeping on the floor next to the bed. I'm facing Jessica whose eyes are open; Courtney’s on the other side of her mom, but I can’t see her face.

Seeing Courtney looking up at me had surely been enough to kill my hard-on, but it was already a struggle for me to keep it up. Unusual for me. Could the DXM, that I've been constantly using since my trip to the mainland, be causing this? I know I’m sweating more than I usually do (and I'm a sweaty guy). The seeping, sopping sweat is a distraction from lovemaking; so are all the brightly colored images flashing through my head.

In the dark, or whenever I close my eyes, I see bright squiggly lines and geometric shapes, like I did years ago when I used to drop acid. While I enjoy this show when I'm just lying in bed, it does seem to get in the way of my sexual pleasure. I wonder if Jessica can tell I’m high on something, but then I realize she has other things on her mind right now.

Staring at the ceiling, Jessica talks about how angry she is with all the doctors, the psychologists, and the school system. Courtney was autistic, they had told her. But now the autism diagnosis has come into question.

While I was on the mainland, Jessica had taken Courtney to a specialist. His tests confirmed that Courtney has a condition known as Rett Syndrome. Rett Syndrome is a genetic condition which is often misdiagnosed as autism; it almost exclusively affects girls. Children with Rett Syndrome develop typically for the first couple of years, then their skill development slows and eventually regresses. So, a girl with Rett may begin to walk and talk in their first year or 18 months, and then begin to lose these skills.

Many of the features of Rett Syndrome are similar to Autism (e.g. communication deficits, screaming fits, hand flapping), however, where children with Autism almost always prefer objects to people, girls with Rett, including Courtney, prefer people to objects and seem to enjoy affection.

As I try to comfort her, I think about all the dreams and aspirations I have for my own daughter; I try to imagine the despair of losing those hopes.

Jessica is a loving mother to both of her daughters. She's patient and consistent. Courtney who usually seems happy benefits from her care and attentiveness; I tell her all this. Unfortunately, I can't think of much else to say that might be reassuring. I've read up on the subject since Jessica told me that Courtney was being tested. I point out that ten-year-old Courtney has maintained many skills that other girls with her condition lose (or have never gained) by her age. Courtney is still walking and, though she has a limited vocabulary, talking. I realize that the best I can do for her is just hold her.

I think back on my trip to Minneapolis; it was fun, but Hawaii really is home for me. I miss Shea the most right after our visits, but it's consoling to be around Jessica and her daughters. Courtney and Samantha are really fun kids, even if Courtney has just interrupted our lovemaking. I’ve spent several overnights with Jessica and her girls since returning from Minneapolis and things seem to be going well. Sure, she’s made some comments that she doesn’t want to move too fast, but I know she’s the one for me. I crave her company and come over almost day after work to hang out with her and the girls. I try to be helpful by keeping them occupied while Jessica works in her room pricing jewelry for her kiosk.

Eventually Jessica interrupts the silence to tell me about a dream she'd had. "It's like you were stalking me." I wonder if she’s just a little superstitious or maybe she’s suspicious about how I’d just happened to run into her at her workplace when I first asked her out. Or, it crosses my mind, she might really be psychic.

I quietly begin to panic. She’s just ended a relationship with the father of her girls. It’s been less than two months since we started seeing each other and I'm trying to spend every moment I can with her. It occurs to me that my feelings are out of proportion with how well I know her. No, I really do love her...I think. It doesn't matter, I’m in love with the idea of her.

I try to reassure her. I apologize for pushing the relationship when she's made it clear that she wants to take it slow. I agree to give her some space.

While I lay awake, watching oceans of ever expanding purple and green checkerboards behind my eyelids, I think about my past relationships with women. Am I always the needy one? Not always...usually. I’ve pretty much stopped going to those 12 step meetings. I don’t see how they can really help me. They just make me feel guilty about drinking cough syrup. Now there’s something that seems to help. I feel more outgoing, more creative, more lucid even than I do without it. It gives me a good buzz and I stay in control.

It occurs to me that Jessica may have noticed physical or behavioral changes in me and I resolve to be careful how much DXM I take. She's never seen me drinking alcohol and doesn't really believe I have a problem. To her it's simply a matter of self-control. I think to myself that maybe if I had a few beers now and then I wouldn't have to use so much DXM and maybe some cough syrup in moderation will help me to keep my drinking in check.

“I’m not sure Sandra is coming;" Muriel interjected, "Ms. Lim hasn’t mentioned Sandra since the last meeting. I think maybe she can’t afford her anymore. She runs one of those kiosks in International Marketplace, and I guess they’re gonna have to shut down for some renovations. She’s separated from Courtney and Samantha’s dad; I don’t think he gives them any help.”

“How is she at the meetings without Sandra?” I asked.

“She’s polite, but demanding.”

Mrs. Arakaki added, “We’ve had a good relationship with Jessica. She’s an involved parent. She has another daughter in second grade here. Samantha’s a really bright girl. We don’t see much of the dad though.”

“The other thing is that I think the Skills Trainer and the Autism Consultant are friends with Ms. Lim. I think they’re the ones who’ve convinced her that Courtney needs a home based program.”

*

As it turned out, when we held the IEP meeting the next Monday afternoon, Sandra was not present. I was still sober and happily surprised to find that Ms. Lim was the beautiful Jessica that I had met three years earlier at the autism conference. Mrs. Arakaki asked her if Courtney’s dad would be attending the meeting. Jessica replied that he would not be involved in future meetings regarding Courtney, though he would be occasionally picking the girls up from school.

The meeting went smoothly. As expected, Jessica asked the team to consider a home program for Courtney. The Autism Consultant and Skills Trainer who worked with Courtney indicated that she had made much more progress at home during the previous summer than she was making now that school was back in session. I asked if they had any data to support this and they said that they had been collecting data, but would need to compile it to show the progress. The team agreed to meet again in a month to look at the data and discuss the option of placing Courtney in a home based program for at least part of the school day.

I struggled to stay on task during the meeting. Jessica somehow captured my imagination in ways that few women have. Of course she was very pretty, but encountered a lot beautiful single women living and working in Honolulu. She was...she...I’m not a big fan of the French, but they know how to say it by not saying it...she had that certain je ne sais quoi and somehow at that meeting I felt a certain sense of destiny, an irresistible magnetic attraction to this woman who I’d only met once, years before.

She was clearly smart and cared for her daughter. Unlike many smart single parents I had encountered who had the additional burden of raising a child with a disability, she came across as very reasonable.

So many parents of children with disabilities are damaged in one way or another. Finding out that their child is somehow different can be a tremendous blow to a parent. And children with autism spectrum disorders often appear to develop typically for the first year or two. Their parents are often still coming to grips with the fact of their child’s disability at the same time they are beginning to have to deal with the bureaucracy of the public school system and other organizations charged with the care and treatment and education of their disabled child. They are unsure what their rights are as parents of a disabled child. By the time they fully realize what rights they have (or even that they have rights) in the process of determining an appropriate program for their child, and what treatment options are available for their child, precious months or years have often been wasted.

With many disabilities, and with autism in particular, early intervention is critical to helping the child to develop and learn to his or her potential. Parents, realizing that time has been wasted, begin to resent the professionals, the people they had regarded as experts.

In Jessica I detected this resentment, but unlike many parents I have encountered, she didn’t seem to take the resentment out on the school staff in any kind of mean spirited way. To be sure, she was advocating for her daughter, but she was civil, even friendly with the school staff. She had brought tiny “ladyfinger” bananas (something I had never tried) to the meeting for all to try. And she seemed friendly with Andrea and all the other school personnel I saw her interact with. When I suggested that the team need to look at data before deciding whether to develop a home program for Courtney, Jessica was clearly unhappy, but when the Autism Consultant agreed with the suggestion, she didn’t press the issue.

1.

Perspiration is the bane of my existence. I am a sweaty guy. I’m having a difficult time maintaining my erection and sweat is dripping down my chest onto Jessica below me. It’s really not that hot in this room, but still the sweat pours from my body. All this wetness is distracting me from the pleasure I’m supposed to be feeling. I turn to my right and catch a glimpse of Courtney, Jessica’s ten-year-old daughter, looking at me. She smiles.

I pull off. “She’s awake.” I say.

“Courtney, You go to sleep right now!” Jessica orders. She sounds annoyed but I see her smirk when she turns away from her daughter. She gets up and I watch her move toward the bathroom. Barely five feet tall, I’m proud to be with her; she’s exactly the type of woman that I've fantasized about. Pretty, petite, fit, smart, Asian... the qualities I value in a woman, pretty much in that order.

She has a soft face; her lips hold a permanent pout. There is strength and a quiet dignity about her. A year from now, a friend will tell me she looks angry... and she will be, angry and afraid. But today she’s not angry, she’s loving, playful and horny. Her hair is dyed with blond highlights; though she sells jewelry for a living, she only wears one bracelet, one of those magnetic ones that are supposed to have some sort of mysterious health benefits.

Born in Vietnam, she was only four when her family fled after the war. She was raised in LA before she moved to Hawaii. She speaks four languages. Though from Vietnam, she’s of Chinese decent and speaks dialects of both countries as well as southern California valley girl English. I like that she’s Asian, she’s American, and she’s not local.

“Hiiii Jooooe” Courtney says in a low quiet voice.

“Go to sleep Courtney.” I tell her.

Courtney is the reason I met Jessica in the first place. She still sleeps in bed with her mom. Her younger sister Samantha sleeps next to the bed. They have their own room, but they’ve only just moved into this new house and their room isn’t furnished. Besides, this is what they’re used to; in the old apartment they had to share a room with mom.