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Asking for the Unreasonable


Over the course of the last few years (let's call it 4), I've had a variety of conversations with a variety of parents about what the integrated preschool and elementary schools in my town should be providing in the way of services to children with autism. Also with a few people out of town, but mostly in town. Service delivery to children with autism is through the same set of professionals that supply services to children with other disabilities: speech therapy, occupational therapy, physical therapy, music therapy, etc. Sometimes there's ABA available. Some people -- fewer -- have training in Floortime.

I've been trying to understand how services are delivered in the Netherlands and, thus far, not succeeding, altho it seems at first glance to be closer to a co-teaching setup than mainstreaming + pullout services (that is, a classroom with a "regular" teacher and a special education teacher, rather than having a regular teacher, one or more aides and services provided by taking the kid out of the classroom for things like speech etc.). I'll blog as I figure out more.

In the meantime, our arrangement has ceased to seem "normal" and "reasonable" and started to look really weird. And parents who expect speech therapists or whatever to supply a bunch of therapy directed at how-to-relate-to-other-people (when the kid's verbal skills are about as good as mine) suddenly stop sounding like overly-demanding parents. So who _should_ be supplying assistance with one of the core deficits of autism: social communication? Should it be the school? Should it be through speech therapy? Should it be through medical service provision? Other?

I don't think it should be done through the speech therapy approach, because while they do "nonverbals", they don't do them the way I think they should be done and in any event speech therapists have a very "adult" way of thinking about relationships. I think this should be handled through someone who can facilitate play, whether in a classroom, on a playground or at a home. But it shouldn't be one-on-one and, increasingly, I don't think it should be between a neurotypical peer and an autistic child. I know I relate much more "naturally" (<-- awkward, but I don't have anything better. Sorry!) to people who I perceive to be spectrum-y than to people I perceive to be either neuro-typical or whose neurology, while not typical, isn't like mine. I think one of the problems I had as a child was a lack of other kids like me -- so I gravitated towards adults which didn't really address the issue.

I had a great conversation with another mother about looking for this vs. trying to get the schools to do this -- she loves the idea. I had a great conversation with yet another mother about this and she'd love to have her son involved as well. So I've got three little boys, minimum, for this hypothetical facilitated play date. I just need a play therapist, appropriately skilled person with a social work background with experience with autistic kids, or whatever, to make it happen. So I talked to another mother who is by profession a speech pathologist working in schools (but not ours) about what kind of professional I should be looking for ... and she's extremely committed to the idea the school should be doing this and it should be in the IEP.

So we had a long conversation about what exactly I'm looking for, and while she absolutely can break down logically and at a high level the skills involved, she cannot -- even as much as I can -- instantiate those abstractions into concrete games to start among a group of boys and guide along the way. Eventually, she said that sometimes parents do ask for assistance with this type of issue and facilitated games are set up during recess -- but the kids who are the target for this invariably refuse to participate so the games are played with the normally developing children and the kid who was supposed to be "helped" by this is, if anything, even more isolated. And the parent is perceived as asking for the impossible.

I knew this -- maybe not in detail, but I _knew_ that I'd never seen a school get this right, and I'd heard a lot of stories about them getting it horribly, horribly wrong. But I thought, hey, maybe I can set this up independently, and if we can get a community of pros working on this subspecialty, eventually it will migrate into the school system. Turns out it may take longer than I thought, because _all_ of the stuff I am finding about facilitating play violates virtually all of my criteria simultaneously (too structured, too abstract, relying upon not just a neurotypical child but _one who has been trained for the purpose_, etc.).

Geez. Is it really so hard? Get a few autistic boys in an appealing play area at the same time (playground, somewhere with bikes, in an indoor playspace with lots of room to jump and run and bounce) and then help them interact just a smidge better each time they do? I'm just looking for a pro with better repertoire than I have and a big bag full of play objects a la what early intervention specialists run around with -- but for older kids.

My next step, now that I have a better understanding of what I do -- and do not -- want is to send out a bunch of e-mail (to the psychologist, the neurologist, the teacher, etc.) asking for ideas regarding who might be willing to do this. The last person I mentioned did suggest getting in touch with Lesley and similar to see if their grad program might be interested.

ETA: I have names! Wheee! Okay, now the scary part of actually trying to make it happen.

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