Josh

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Josh pages

Overview

Josh at the NC Museum of Life and Science, July 2009

Josh (born 1992-12-12) is the oldest of Sandy's non-adult children. He is autistic. He is generally unable to communicate, even using hand-gestures (pointing, touching object, holding up object).

He is very healthy, though, and quite clever, dextrous, and strong. Given all that, he has always been a little difficult to control -- but he was generally happy as a child, so it wasn't as much of a problem. Since hitting adolescence in 2007 or so he has gotten much bigger and stronger; he is now larger than Sandy, and able to resist all but the most strenuous and determined efforts to force him physically.

Josh is also unusually interactive for an autistic person; he smiles, gives eye contact, laughs, and plays possum sometimes when he knows he has to do something but doesn't want to; his main issue seems to be with communication.

For more, see:

To help Josh and millions of others like him by providing sufficient funding to eliminate the years-long waiting lists for many needed services, please sign this petition.

notes

  • Need to reorganize the facts, behavior, and group home pages; some overlap and some missing areas.
  • Need to note newish problem behaviors: leaving fridge door open, crying in middle of night when he loses member of either of his current Groups.
  • /bureaucracy: page for notes about how the system works with regard to Josh's specific needs
  • Possible lawyers to contact about Josh's SSI: Roberti, Wittenberg, Lauffer, & Wicker and McGill & Noble (inclined to go with the latter, iirc)

Status

We have become convinced that Josh would be happier living elsewhere, and that our house does not have adequate resources to provide for his safety when he is exhibiting certain behaviors; see /group home.

On 2009-10-13, we applied for a Therapeutic Foster Home in Durham, and are expecting a decision from ValueOptions by approximately 2009-10-27 2009-11-17. There is no guarantee they will accept, as Medicaid only covers part of the expense and local funds to cover the rest are scarce right now due to the economic downturn.

Care for Josh continues to disrupt our ability to generate income (despite many opportunities -- I just don't have the time!), and the last of Sandy's inheritance will run out in a few months (my best estimate) if things do not improve, leaving her with a $100k+ mortgage and no assets other than the value remaining in the house.

news

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Archives

Needs

Josh's primary need is to be in a group home.

Some additional needs, which could be addressed properly in such an environment, are:

Medical Care

We often get the impression that Josh's acting out is due to physical pain, possibly just a headache or possibly dental. We have absolutely no way of determining this. I used to give him neck-massages which seemed to calm him down, but this could have been purely because it feels nice to have a neck-massage whether or not you have a headache. We also can't see any visible indication of tooth problems, but it is very hard to get him to open his mouth; even brushing his teeth regularly is a battle.

Obviously it would help if he could communicate when something was hurting, but I don't know if he can be trained to do this at this point. I've heard that there are "tricks" one can do to get medical clues from a non-communicative person; Josh really needs to be regularly looked at by someone familiar with that sort of thing.

Life Skills

The most important life-skill Josh could use at this point would be some way to indicate what he wants. His current methods of indicating that he wants something include:

  • "hovering" around the office (to get our attention)
  • whacking one or both of his brothers (so someone will get up and notice that his juice is empty, or other things; sometimes we can't figure it out)
  • random vocalizations (we encourage this one over the others, as it is more communicative in nature)

There are a variety of methods Josh could use to indicate what he needs without having to use verbalizations (e.g. pointing, or taking someone by the shoulder and leading them); he seems unable to do any of them, though perhaps training could help with this. At school and other places, he often is given picture-cards as a way of informing him of the day's schedule; I don't know if anyone has made a serious effort to get Josh to indicate choices using similar cards. (2006-06-25 Update: Yes. Read this.)

Completing his toilet-training would also be helpful. He seems to have grasped the concept of wiping, but he still expects others to do it for him if they are around (and when they are not around, he tends to use the entire roll of toilet paper and all the moist-wipes).

Notes

Josh sometimes displays surprising skills and awareness. Just now (2008-01-20) he accidentally knocked over a box of (plastic) Christmas ornaments – and then spontaneously started picking them up and putting them back in the box. He did it very efficiently and thoroughly, even spotting an extra hook on the ground. After that, he apparently started pulling ornaments off the tree and putting them away too, so we had to hide the box... but now we know that he'd probably enjoy helping with that task when we're ready for it.

Later that day, after we made him come in from a walk (in the freezing cold) that wasn't as long as he wanted, he attacked the kids and me -- punching me in the shoulder and slapping me in the face.

Links of Convenience

wiki file: https://hypertwins.org/mw/index.php?title=Josh&oldid=13426