saturday morning, who's gonna play with me?

[phinnia]

So in the Search For Military School or At Least Other Options which took place yeterday afternoon (you thought I was kidding, didn't you? Hell no.) we did find out a few things:

• There are actually Autism With A Side Of Blindness Experts out there. They're based out of Portland. They're holding a seminar in Yakima this summer. I'm so there, dude. Or at least I want their literature.
  
• The Child needs An Intensive Behaviour Plan over the summer, if nothing else, because we are lacking mojo for teaching him important things like life skills, and if he doesn't get structure he goes crazy and I want to send him to military school. Must Yell At Psychiatrist to make this happen.
  
• Daycamp is worth the money. (see above note re: structure.)
  

Teh Spouse, because he is A Crazy Person, has musings on fandom, crackfic and a Quest for Ultimate Evil here. You should read it, for he is a Funny Crazy Person..

Comments

[kibbles.livejournal.com]

Does your respite come with hours for SUPPORTED COMUNITY LIVING therapy? Or your waiver? That's what kiddo is getting. His respite place also does SCL, and does life skills stuff. So does his OT, as far as eating goes.

[tallin.livejournal.com]

Respite hours have run out, but Microsoft covers OT, PT, speech/language all at 100%, and reimburses ABA therapy with a therapist at 80% and with a therapy assistant at 100%.

[tallin.livejournal.com]

Actually, to clarify: respite paid for by the state has run out. I suppose that, technically, refering to any babysitting that we pay out of pocket for as "respite" is a bit of a misnomer.

[paraoptomistic.livejournal.com]

Funny hubby, you has him.

Ron and I had a lovely discussion about teaching autistic kids (almost wrote cats there, that would be a whole 'nother thing) and task boards which I related to the "Lines in the Sand" ep of House. But I don't think he really gets it either. Le sigh.

[kibbles.livejournal.com]

Oh wow. I just had my respite upped by the state, but then I only get about 6-12 hours a week of it. And the SCL is with the same people so they'll just do SCL stuff if the respite is coming up short. And my waiver covers all the stuff our private insurance doesn't cover. (Which is RANDOM)

[fibro-witch.livejournal.com]

Envy for funny hubby. I friended him, not sure if he will friend back.

[machineplay.livejournal.com]

I'm glad you weren't kidding. I love you. <3 If there's ANYTHING I can do to help, let me know.

[tallin.livejournal.com]

What is this thing, "supported community living therapy"? I must know ... especially since that might be covered, too—or at least it might be worth payhing out of pocket for.

[johnpalmer.livejournal.com]

Chuckle. Now I'm starting to understand why folks quest for the blue badge so heavily!

Hey... you're a programmer, if I remember right. Do you do C#? Would you mind if I pumped your brain a bit?

[liadra.livejournal.com]

Don't ask me why, but visions of the boy child at military school gives me a fit of the giggles.

[heathrow.livejournal.com]

The sheer amount of medical-related acronyms and therapies you all wrangle impresses me.

[tallin.livejournal.com]

Right on both counts—I'm a programmer, and I do C#. I can also do C++, VB .NET (under duress, but that's what most programmers who work at Microsoft seem to say about VB .NET), VBScript, and some command scripting. Whatcha wanna know?

[tallin.livejournal.com]

God forbid I ever have to combine medical terminology and acronyms from my industry in a single message/post/other text entity (... after the 1:1 with my manager about our product hitting ZBB, I have to verify Sean's eligibility for ABA therapy, attend a meeting for all FTEs working on Win7, check with my PM as to how he wants the MSI packages designed, see why Sean's OT isn't working on potty training, get ready for his next IEP (fortunately, his TVI seems to be on the ball)then, when I get home, I need to RAS in and fix some bugs I've found in the XML I feed to WiX to create the MSI and MSM files we're using across WETR for testing. Oy, the life of an SDET with a SpEd kid. I suppose it could be worse—an autism diagnosis is easier to deal with than PDDNOS).
That comment probably needed a glossary.

[kibbles.livejournal.com]

Ok, Ted is on medicaid waivers, which is what we get respite thru, since the agencies here don't accept out of pocket for respite. He gets the MR waiver because he was evaluated as possibly having mild mental retardation and quite honestly, that's the easiest waiver to get on in my state. Ok

SCL is when his respite person takes him to a restaurant with the express purpose of learning to eat in public with no problems. We have goals set with the agency. Eat in public. Get a haircut (something he will ONLY do with her, never with me). Safety goals (don't dart into the street, wander off, talk to strangers). She will practice street crossing, count the prompts needed to see if he will look both ways, things like that. We have financial goals, to help him later on. When he goes to a store he needs to do this without prompts: Pick his item out, put it on the counter, hand the person money, wait for change. Even if he can't count it. He can't live independently if he walks into stores, takes items and leaves. So these baby steps will teach him financial skills. They count if he needs to be prompted to put it on the counter (one time, no time, six times of TED PUT THAT ON THE CUONTER). Evaluate if he screams when he doesn't have it, and so on. Later goals for older kids are things like navigating the bus system. WOrkers go on the bus with them and see if they can ask for a transfer, ring the bell at the right stop, check the schedule, and so on.

Socialization is part of it. Some agencies have group SCL. They take a number of kids bowling, swimming, out to eat, and so on. Out in public to make it easier for them to be part of the community.

Learning to use the library can be part of this, too. Learning to find the police when in trouble, use a pay phone or a cell phone, dressing appropriately, all that. Older ones will learn what you need to buy when you go to the store. Toothpaste, milk, bread. SOme have people who even go to a workplace (we have a lot of employees that hire disabled people) to help them learn their job.

SCL is also used in a group home or supervised living environment. Agencies have apartment buildings that maybe have someone on staff 24/7 in the building. Some agencies just check up on young adults/adults in private apartments to make sure they are eating, practicing basic hygiene, keeping clean, stuff like that. The whole point of SCL is so that people can be as independent as possible. Oh yeah, even things like how to keep from being exploited sexually or in other ways are things that some people need to learn before moving out as adults.

Some links that explain the services:
http://ia.easterseals.com/site/PageServer?pagename=IADR_comm_living
http://thechp.syr.edu/toolkit/#PLANNING_FOR_QUALITY_COMMUNITY_SUPPORTS is REALLY long but the links on that page give sample action plans that can be made.
http://www.cumberlandriver.com/scl_serv.html has some examples.
http://www.dubuque.k12.ia.us/specialed/index.html#transitions is from our school district and has some useful information, even though our children are so young. Knowing how people view transitioning to the adult world helps parents make goals and build the foundation. Those goals are what the SCL people keep in mind when coming up with a care plan.

If your respite person came through an agency, ask them if they do SCL. If you ever got the state $ for respite, ask if they have $ for SCL and if they have a list of providers or if your respite person can do it. We prefer having the same person do both. Oh, some summer camps are considered SCL if they teach skills for independent living/living in the least restrictive environment.

Hope this helps. Ask away if you have questions, I'm not the best at explaining things.

[kibbles.livejournal.com]

Maybe that's why I'm going into nursing. I probably know more of the vocab going into it than my classmates. :P

[seularen.livejournal.com]

Your kid has autism? My sister has down syndrome! (Also my aunt has schizophrenia, my cousin and I have depression, and my mom is an early special ed teacher.) Let's bond!

All the kids I babysit have some sort of special need. I knew a kid who was diagnosed with autism but while I knew them was re-diagnosed with something else. It really sucked for the parents. He was a real sweetheart; it was his sisters that gave me the trouble.

My sister goes to public school. It really sucks. She's two years away from graduating, and we have no idea what's going to happen with the rest of her life. She's really independent, but obviously not that independent. I'm in university, so I'm away from all of it. I'm thankful for it, but I feel guilty.

I'd kind of love to see the military try to deal with an autistic kid. I think their heads would explode slightly.

[phinnia.livejournal.com]

*grin* There'd be a whole new version of Skippy's List. (http://skippyslist.com/)

Yep! Child is autistic, nonverbal and totally blind. Also has something akin to auditory processing disorder (http://www.nidcd.nih.gov/health/voice/auditory.asp), so communication is ... entertaining. :-P

*nodnodnod* Yeah, I get what you mean about the thankful/guilty feelings, so much.

[phinnia.livejournal.com]

he generally does as soon as he actually notices. :-)

[phinnia.livejournal.com]

There'd be an entirely new version of Skippy's List (http://www.skippyslist.com) JUST for my son. <3

[phinnia.livejournal.com]

I wonder how much of cat behavior is autistic by nature - I mean, cats UTTERLY are the center of their own universes ...

[phinnia.livejournal.com]

*mwah*
I love you too.
And I will.
<3 <3

[miintikwa.livejournal.com]

I hope you can get some respite. :D

[seularen.livejournal.com]

Holy crap. That's a lot of stuff to work with. I've worked with autistic kids who were completely nonverbal but never blind. Does he know sign language? (Depends on how old he is, I guess).

I'm really close with a little boy who has down syndrome and can speak very, very little (and even then we have no idea what he's saying) but he doesn't exactly get into trouble that often. He likes to run away and get his way but other than that he's the sweetest kid.

I have so many fun special needs stories. How can you not when they do ten outrageous things a day?

[phinnia.livejournal.com]

We're working on teaching him tactile sign (insert grumble on how the bedamned school does not appear to see this as a vital fucking priority here). :P
Seaners is ... odd. <3 But fun, especially when it's a normal week that hasn't had me sick for half of it and isn't coming on the heels of a hospital trip for drug interactions that they thought might be a stroke (our adventures! let us show you them.) I hate school breaks. He gets very, very restless, to say the least.

[curtis.livejournal.com]

Wasn't there a book called "All Cats are Autistic" or something like that?

(We have one that's more than most...)

[curtis.livejournal.com]

I actually understood 2/3 of that (of course, I program for fun, my father's an OT, and I'm borderline-Asperger's)...

Yeah, it could use a glossary.

[heathrow.livejournal.com]

I recognized 9 of the acronyms there. I feel special. :)

[johnpalmer.livejournal.com]

Well, I answered my immediate question the way I should have - I used a test program and discovered the answer. But if it's okay, and if your LJ e-mails work, I might pester you if I run into something I can't answer.

[tallin.livejournal.com]

That should be fine—my LJ email address always tries to point to my current email address.