And an excellent post on autism cults. Encapsulates it all very well.

Via one of my online friends, a really saddening article on a family struggling with the daughter's childhood schizophrenia. The father writes about his own struggles here. Somewhat hard to read about: his pain is pretty unfiltered, and there is no pretty happy ending in sight, no leavening admixture of joy. It's all pretty realistic.

A Short Story I Wrote When I Was in a Bad Mood Last Year

Once there was a girl named something like Beth Feldman, and her husband’s name was something like Brad or Joel. They had two kids and lived in a split-level house that they were remodeling. The kids went to public school and she was active in PTA. She had a bunch of friends and they played tennis and had bagel lunches at Gold & Myers. She still had both her parents though her mother had had a breast cancer scare. Beth was also active in Relay for Life and fielded a team for it every year. She wasn’t especially friendly with the families on her block, but it wasn’t anything conscious: she just didn’t have anything in common with them.


One day one of the neighbors said hello to her and she didn’t recognize them and called them by the wrong name so they ran her over with their car in ShopRite. Her husband was sad for awhile but after going to bereavement groups for a year or two he met someone else who looked just like her and their family lived happily ever after. The new wife made friends with most of Beth’s old friends, who told themselves that this way they were staying in touch with the kids, and every now and then they would have to remind themselves that someone had traded places with Beth. The crazy neighbor was tried and convicted and went to jail. The judge was of the opinion that the neighbor was manic-depressive and sent the neighbor to a psychiatric hospital for the criminally insane. The rest of the family moved and everyone forgot all about them. The house was occupied by a Korean family who didn’t speak much to the neighbors, nor did the Feldmans speak to them. They got annoyed by the smell of cabbage cooking, sometimes, and eventually Bradley or Joel got a nice promotion and they moved away to a bigger house that was a Colonial. They still gave money for breast cancer.

I may speak to the rabbi. Can't hurt; might help. And an overseas friend of mine has put me in mind that actions that don't benefit you directly can still help others....

Mixed Feelings

Everyone who has a disabled child has an uneasy relationship with milestones. Sometimes they remind us of what we’d wished for in the days BK (Before Knowing). Sometimes they remind us of what we’ll never have: they’re a way of measuring the time that has gone, the difference between our children’s progress and those of the neurotypicals. And when we enjoy them, sometimes we enjoy them with the knowledge that other families experience them less ambiguously. My daughter’s first day of kindergarten, for example, I remember thinking that she’d been riding a bus for over a year on her way to the therapeutic preschool she had attended. Getting on the bus? Routine, though she did look awfully cute. When I put my second child on the kindergarten bus for the first time, I stood next to a woman with a typical child: she was crying as she watched her daughter ride away; her husband had decided to go in late to work and was videotaping the whole thing. There’s an innocence to these experiences, I suppose, that I don’t have.

I am, on the other hand, fortunate, in that my daughter does quite well with minimal support. She has every likelihood of going on to college and a career, and relationships on her own terms. And yet there are days.

Today was my daughter’s Hebrew school graduation. Religious school, as many parents of disabled kids can tell you, can be a difficult experience. IEP’s aren’t mandated. Schools have varying degrees of tolerance. Teachers have varying degrees of training. Our kids are often tired and cranky at the end of the day, and then it’s off to Hebrew school for two hours of parent-mandated religious education when they’d rather be home on the computer or snarfing junk food before settling into homework. We insisted, however. The first Hebrew school was, like the bed in Goldilocks and the Three Bears, too hard: her teachers liked her, but they were elderly and not altogether aware of what was going on in class when their backs were turned. My daughter was ostracized. The school suggested we work on social skills. After a very, VERY uncomfortable meeting, we switched synagogues.

Synagogue Number Two had better-trained teachers and smaller classes. The religious school was run by a fearfully efficient Israeli woman who did not indulge parents. I did not feel comfortable sharing my concerns with her. Naetheless, we stayed: my daughter was learning more there, and she knew more kids from our local elementary school. Things did not particularly improve socially, and the particular group of girls there was not welcoming. They were not precisely unwelcoming, either. She simply wasn’t part of their world, and so they cheerfully ignored her and didn’t invite her to their bat mitzvahs. She perhaps didn’t help matters by acting out a little bit and running off to the bathroom every five minutes so she could hide out until class was over.

The school did encourage community service, though: the kids went to the local therapeutic preschool a few times to help out during the weekend family respite program. It happens to be the same preschool my daughter attended. My daughter doesn’t really remember it, but she is well aware that she used to go there. She has an uneasy relation to her disability, preferring to deny it. Because she has the kind of invisible disability that manifests itself behaviorally, she can usually get away with “passing.” She was fascinated by the respite program, and she often talked about wanting to help out there. She’d come home and describe the children there: she is very patient and motherly with young kids.

At tonight’s graduation, a number of students read their writing. One theme was their experience volunteering at the preschool. My daughter spoke on this topic along with four other children. She hadn’t told me she had been picked to speak. I felt a familiar anxiety mixed with anger as I waited for the other speeches. One made me grit my teeth as she spoke of learning that “we shouldn’t think they’re different or less.” Another commented that it made her realize how good her life was. I started drumming my fingers. A third child was a boy who had been in my daughter’s therapeutic preschool. He clearly was suffering from anxiety and needed to take deep breaths before speaking. I saw other children in their seats nudging each other and grinning. My daughter rose for her turn. Without using the singsong intonation so typical of student readers, she spoke specifically and expressively about the children she had seen:

The children were really sweet. One of them, Megan was so nice. She wanted me to go outside with her. It was so cute. I also met two boys that were really funny. One was named Robby. We played basketball and soccer. They were fun to watch. One girl was skipping around and crying. I felt so bad for that poor girl. Another boy named Charlie wouldn’t’ talk. I tried to talk to him without luck. Overall, my visit to [the preschool] was a great experience. The children had some learning and behavioral disabilities, but I realized that they can learn. I want to volunteer there every week. This was the best Hebrew School experience I have ever had.

Neither she nor her fellow preschool alumnus spoke of their own connection. When I spoke to her later, I said, “Would you have felt comfortable telling people you had gone there?” “No,” she responded. When I congratulated her during a brief break, I saw her sitting alone while the other students excitedly chattered and schmoozed.

After the diplomas, after the speeches, the president of the shul spoke, as did the rabbi and a graduating high school student, urging the students to further their Jewish education, extolling the virtues of community, reminding the students of the friends they had made. We went into the next room for Kiddush. I saw a tableful of children my daughter’s age, ten or eleven of them; I knew she would never feel comfortable going over to them, though she’d known some of them since first grade. None of the other students congratulated her, though several parents did, as did her teachers (some of whom were very fond, and supportive, of her). Over cheesecake, my daughter said, “Everyone was talking about being in Hebrew High and having all these friends, but I don’t want to go because I don’t have any friends here.” I reassured her we wouldn’t make her go. My husband, obviously feeling the same sorrow and regret, commented, “Kind of hypocritical, all that talk about community.”

I didn’t know what to say. For most families, I’m sure the words they heard were true: they could sit back and be proud, the way we do when we see our children dressed in Thanksgiving costumes. I like the rabbi quite a lot: he is an intelligent and sensitive man. And yet, my few tentative attempts to talk about what it feels like for families of disabled kids, didn’t meet with much of a response. The teachers got training, I was assured. I should write up whatever concerns I might have and the principal would share the concerns with the teachers. And yet: what I wanted was so much simpler: a sense of belonging in that school, not as a special needs student, but as a fully functioning, accepted member of the community. And it was all so clear to me, sitting in that sanctuary, that we hadn’t given her that. She will be bat mitzvahed there, and she will be beautiful, and she will perform the service exactly as any other student would, and yet still I will feel that she was somehow apart, that this milestone, too, was different.

Did you know that it's hard to find a James Joyce action figure? And that a Yeats one does not exist? And the Jimmy the J one is really ugly. Hmph!

So. Arlen Specter. Wow. Interesting times.