Tuesday, March 15, 2011



“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.