Previously on My Blog About Autism…wifey and I had a lot of problems both getting our district to the table, and with the district’s plan to mainstream our child. We arrived at the table…

Lisa didn’t exactly apologize for the three month delay, but she said that she’s spent the time contacting nearby school districts and trying to arrange something for Dar. So far, she’s had no luck. I asked: are there waiting lists? Might their situation change between now and September? Can I do anything myself? I told her a secret: I’d already called Albany. They told me I had to contact [job title] from my district, which is Lisa. Lisa laughed and wanted to know everything – because, she said, she wonders if they’re telling me something they aren’t telling her. In any event, no one seems to have room anywhere, and she said she’ll keep trying. But did we miss our window? Maybe I’ll never know. A life lesson we keep learning, kinda like “men suck” on Mad Men.

It’s obvious to wifey and myself that Lisa’s big takeaway from our previous IEP was that transitions are very hard for Dar and have led to months of regression. Thus, she’s got two possible solutions which will reduce his amount of transitions: 1) remaining in pre-school another year, but in the “combined” class – meaning not the all-special one he’s in now. 2) Going straight to kindergarten at Thousand Oaks, in a class of 19 other kids where Dar would probably be the only one with an IEP. This was presented as a considerable bend-over-backwards for us, because California law dictates that because he was born in October 2009, he should be in Transitional Kindergarten this fall, not the regular kindergarten that she’s offering. Whoop de whoop.

As I clarified with Lisa, the solutions don’t change the fact that each September, Dar will face changes. If he stays in preschool this fall (to minimize disruption), he’s still likely changing classrooms and teachers. Ditto if he spends his next two years in kindergarten. However, he’s likely to have years of the same 1-on-1 aide he has now. I have to admit that that makes a difference. If the school district was offering your child a well-trained, seemingly smart 1-on-1 aide at all times, and you compared that to jumping ship for homeschool or private school (where your child would almost certainly not have 1-on-1 support), you’d think about it, wouldn’t you?

We thought about it. A lot. We also asked the teachers and therapists in the room for their opinion. This was after my saying, not for the first time, “I keep hoping that one of you, with all the work with kids you’ve already done, will have had a kid that was enough like Dar where you can say ‘well, this worked for him, it ought to work for Dar.’” (Maybe they don’t want to say the secret reason, that nothing ever helps kids like him?) The preschool-paid people came out in favor of putting Dar in Thousand Oaks (eventually a K thru 5). Not the first time or the last time someone with fantastic yelp reviews has said to us, “I think I’ve done all I can for Dar.” And he’s not better. Great.

I pictured us in a year, getting an IEP like the one we had in October 2013, where Dar had only met 2 of 14 of his goals from a year before. I explained this and asked, “Would this be when the BUSD admits that this isn’t working?” That seemed harsh, so I followed up with, “Look, I went to Berkeley schools for 12 years, and I don’t think I turned out bad, so I don’t have an axe to grind, but I’m just wondering, in Dar’s case, what would non-success look like, and what would be the timeline?” Never got a great answer, except that we can call an IEP whenever we want. And wait three months again, I guess?

The IEP included a somewhat extensive discussion of “non-public” schools, as they’re called, like Anova, A Better Chance, and Via. We mentioned the story of one of our neighbors, in Berkeley, who tried several places until she finally landed her autistic son at Star Academy in Marin County; she loves it and happily drives her son across the Richmond-San Rafael Bridge (both ways) every day. As I said this, Lisa looked as though her head was going to explode like [insert Game of Thrones reference]. She said something along the lines of, “Well sure Star Academy is great if you don’t want any expectations on your child at all.” I made a Montessori joke (which doesn’t reflect what I think) and she answered, “At least Montessori schools have some goals, Star Academy is just whatever makes the child happy. We believe that learning is sometimes very challenging.” It’s funny, for as much of a bureaucrat as Lisa is, and for as much ire as she inspires among the email groups I check, in person she can be quite convincing. She was happy to defend Berkeley’s general policy: “It’s not like we decided on mainstreaming because that makes it easier for us. It doesn’t; we have to hire specialists for every class, instead of just certain classes. We decided on mainstreaming because we did extensive research and compiled statistics that show that mainstreaming builds the skills that these kids are going to need to be independent in life.” Hmmmmmmm.

The truth about non-public schools is that many of them don’t take special-needs kids as young as Dar; in many cases, we’d have to wait until 1st grade or so. Nobody tells you the real reason for this, but in doing all our research, the image was coming through the blotter: most parents at least try their public school district for a year or so, partly because of money. If you want your district to pay for your kid in non-public schools, you better be able to make the case that the district already tried with your kid and failed. Apparently, our 18 months with the BUSD thus far don’t really count, because that’s only at the pre-school level. Let him try to swim with the big fish, and if he stumbles they’ll consider paying for him to swim with another school. Lisa also says that she doesn’t know where the BUSD has paid for a kid as young as Dar to go elsewhere, except in a couple of cases where the kid was extremely violent. That isn’t Dar. On the other hand, Lisa cheerfully mentions that she’s breaking the mold with Darwin to have him skip Transitional Kindergarten, and that his 1-on-1 aide is somewhat unusual. He’s got a pretty good Action Plan and a work station…oh God. I’ll say it again: if we knew that any particular strategy was going to make him proactively talk, we’d sign up for it in a heartbeat. If we knew, I’d quit working and just work on Dar full time. Not knowing is the source of pain.

Remember how the baby books tell you that those first three years of life are crucial? (If you’re male, just ignore that last sentence; I know you didn’t read the baby books.) I don’t know that the years have stopped feeling crucial. Maybe that’s true for everyone, but maybe it’s different when your 4-year-old has less speech than your 2-year-old. So the idea of “losing a year” is still a very difficult one for wifey and I to wrestle.

What would you do?

I think Dar is coming to Thousand Oaks in the fall. Look out!