Here in Wisconsin, where the state funds intensive-level interpersonal autism therapy, we had some parameters on our choices for what agencies and therapies were available under that program. In our county there are two choices, which I dubbed Agency 1 and Agency 2. At Agency 1, the agency's founder trained with Ivar Lovaas, the grand-daddy of Applied Behavior Analysis (ABA). Agency 2 takes a more relationship-based approach, incorporating principles of DIR/Floortime, the work of Dr. James MacDonald (Communicating Partners), and behavioral principles as well. We'd had a hunch that Agency 2's approach, focusing on relationships, might be the better match for Joy, but we knew that many people get excellent results with ABA. What really sealed the deal in favor of Agency 2 was when we discovered that Agency 1's version of ABA didn't "believe" in sensory issues, while Agency 2 makes them an integral part of their program.
Joy's sensory issues are written all over her -- one of her school-district therapists called her "THE most sensory-seeking child I've ever seen." We couldn't possibly go with a program that didn't "believe" in such a major component of our child's make-up.
So our hard-core work with Agency 2 got underway this July (after 15 months on the dreaded waiting list, which meant that the program actually started 19 months after her diagnosis, though we did do some introductory work out-of-pocket in fall 2007/winter 2008). I'm not quite sure why I haven't been writing about it more, as the one-on-one hours have gradually swelled to our target schedule of 24 hours per week. But at any rate, suddenly I feel like I have a lot to say about it, something that will span a number of posts in introduction and then will presumably weave its way through my posts as we move along.
One challenge has been trying to get my mind around how to talk about Agency 2's program. Interestingly enough, they really don't have a name for their protocol, as far as I can tell. People tend to refer to it by the organization's name, as in "Agency 2 Therapy." That doesn't flow trippingly off the tongue for me; for the purposes of Elvis Sightings, I hereby dub the protocol "House Blend."
Mama Mara recently introduced me to a new blog called Spectrum Siblings, a most excellent and prolific blog by a Cale, a college sophomore on the spectrum (Asperger's) who also has an older brother with autism. He has been doing a "Theory Thursday" series with explorations of neurodiversity and how different therapies can intersect with a neurodiversity outlook. One of his opinions that leaped out at me:
[T]he therapy should follow the child’s interest. The best is a mix of DIR (to be discussed next week), and ABA, as it allows for the child and therapist’s goals to be accomplished.
Ooo! House Blend, House Blend!
So, here's a little bit of an introduction to what House Blend looks like.
The tag line on the Program Guide for House Blend staff (the baristas?) is:
Learning to Interact......Interacting to Learn
Much depends on the partnerships between Joy and her staff.
The program sets and works toward goals in five areas: Regulation (there's the sensory stuff, right at the top of the pops!), communication, relationships, learning, and daily living. There's a definite hierarchy in these areas. The theory is that if you're not regulated, you won't be able to communicate well; relationships depend on communication; and the partner relationships are key to guiding learning.
Right now, the goals for Joy are written in the first three of the areas. The first phase of the program, basically the first year of three, is called Beginning Relationships. The first weeks (months) of the program were all about getting acquainted and getting our team up to speed. Joy accepts new people with relative ease, but the building of the team was a longer-than-expected process. However, operating at full-strength now, we've been able to work on the first goals and revise/expand them as Joy meets the benchmarks. There has been forward movement, absolutely. One of the documents we received from Agency 2 early in the process, which I can't lay my hands on right now for some reason, described the expected progress as an upward spiral. I think that may be from Greenspan?
Anyway, there are lots of specifics about communication strategies that therapists (and parents) are to use with Joy, and how the sessions are structured, and how to take data. I'll do an upcoming post or two on the communication, which is where Jim MacDonald's work comes in, and also a post on Joy's specific goals and what progress we've seen. And probably another post on a typical session. There's much to write about!
Next post, though, I'll talk about the House Blend Baristas, or how Joy's Agency 2 therapy is staffed.
By the way -- Mama Mara may wish to visit the How Can You Possibly Choose link in light of one of her recent posts. The framing story of my post (involving Rose) has something in common with recent experiences in her household...
8 comments:
You've got my attention.
Barbara
(and my gratitude; an answer to my bleg)
"Bleg" = bloggy beg?
Just learned something, I think!
Hey,
Thank you for the link.
I just read your "How Can You Possinly Choose" post, and I can't believe a professional actually told you he doesn't believe SPD exists. That seems like pure stupidity/blindness.
I'm glad this houseblend is working for you. It certianly seems like the best option to me.
Sounds great, JoyMama. I know how comforting it is to know that you have found a program that fits your child.
There are so many things about Joy that remind me of Rhema (even though Joy is n of 1). Rhema is so sensory-seeking that it truly does interfere with her ability to communicate and focus. It seems to be the key. I'm glad the House Blend has Regulation right at the top.
Thanks for the shout-out, as well as pointing out yet another cosmic (comic) connection we share. Yikes.
By the way, I loved your Puff the Spastic Bladder lyrics. I'm thinking we write up the whole song and perform it with JoyDad's band backing us up. Are you in?
"Puff the Spastic Bladder" would make a great name for a band...
Cale - You're welcome! From what you've said on your blog, you're obviously no stranger to sensory issues personally. As far as I'm concerned, it's written all over Joy as well. But as a commenter pointed out on a recent post of mine, SPD isn't a DSM diagnosis and apparently is not favored to make it in to the next edition as a standalone either. My impression, without having assembled an exhaustive bibliography myself, is that the body of research on sensory processing issues may still be a trifle thin, and the head honcho at Agency 1 is not alone in regarding it as moonshine and woo. I think I'm going to have to do a separate post on this... anyway, thanks again!
Rhemashope - I agree. I keep seeing Joy in your blog too, as you describe Rhema and her adventures!
Mama Mara - it sounds like JoyDad is in, huh? We'll never manage to sing the thing without cracking up into demented bad-mama giggles, you know... Do you sing lead, or harmony? :-)
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