Josh

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Overview

Yarrrrrr!
Tis the Dread Pirate Josh!

Josh (born 1992-12-12) is the oldest of Sandy's non-adult children. He is autistic, and currently does not use verbal communication (except apparently at school, where he is usually able to write and speak mostly-rote responses on request).

2008-05-13 - NEW! I have set up a Josh forum for anyone who wants to comment on Josh, autism, social services, etc. but doesn't feel comfortable with the wiki format.

current status

as of 2008-04-24

  • Josh was turned down on 2008-04-24 as unsuitable (not enough of a problem, apparently) for the PATH program
  • We have an application in with GHA Inc. in Albemarle, NC (east of Charlotte); we confirmed that they received all the necessary paperwork and were expecting to hear back from them in January, but have heard nothing; email sent via their contact form in Februrary(?) did not elicit a response
  • We are looking for other group homes to apply to, but at this point do not know where to look
  • We are in the process of trying to get Medicaid for Josh, as this is necessary for obtaining many of the services he needs; there seem to be some bureaucratic obstacles which Tiffany at Maxim Health Care is helping us resolve

Josh is basically completely non-verbal and extremely non-communicative. He is very healthy, though, and quite clever and dextrous. Between these two things, he has always been a little difficult to control -- but until recently, he was generally happy, so it wasn't as much of a problem. He has also gotten much bigger in the past 2 years and is now adult-sized (larger than Sandy).

This past year, the effects of puberty (mainly restlessness, I think) have combined with a very poorly-managed transition from middle school to high school (he is in his first year at Jordan) and he has been acting out both at home and at school. He has long been known for hitting smaller kids when he wasn't happy, but now he will hit larger people (including Sandy, his older brother Mel, and me) and frequently has spells where he cries like he was being tortured and he goes around stomping and hitting the walls of the house (and sometimes windows and mirrors, which is worrisome -- though mostly he avoids hitting anything delicate; he hasn't actually broken anything yet).

We have become convinced that Josh would be happier living elsewhere, and indeed that it has become necessary for his safety; see Living Situation, below.

news

  • 2008-05-08 (Thu) We cleared all the hurdles and were told Josh's developmental therapy could start Tuesday... and then the DT person wasn't available until Thursday (today), but it could start then... and then the DT person never got back to us about logistics, and Thursday has come and gone and we still don't have any effing services. I am trying not to be upset about this. I'm trying really hard.
  • 2008-04-26 The Durham Center just sent us a notice reducing Josh's developmental therapy hours from 20/week to 15/week -- before he has even started receiving the therapy, despite having been in their system for about 2 months. In my view, he's due a backlog of about 4 years of DT due to the Durham Center's unexplained dropping of his case back near the end of 2003. I'm fighting the temptation to send Terry Ames an email with a copy of the letter and containing only "WTF????"
  • 2008-04-19 video (6 min 23 sec) of one of Josh's temper tantrums -- he's basically going around the house crying like he was being tortured, occasionally hitting the walls, doors, TV, windows, etc. (but notice how he doesn't hit the glass picture frame or any of the things hanging on the wall, and the fact that he also calmly turns the TV off and on in the middle of all this) and trying all the doorknobs to the outside. He wants to go places and do things, but if we let him outside he'll eventually head off across town (which would not be good).

description

Josh is 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. On a good day, he will hover outside the office door if he wants something; on a bad day, he will whack Benjy so Benjy will start crying and alert us that something needs attention, at which point we may notice that Josh is out of juice, hasn't been fed, or some other obvious problem – or it may be completely mysterious. We are trying to discourage the hitting pattern, but you can't lecture Josh and he doesn't seem to understand punishment; the best response seems to be to speak soothingly and help him to calm down, and if possible divert him with something interesting to him.

Josh pages

Needs

Living Situation

as of 2008-04-18 We're convinced at this point that he needs to be in a different home, for the following reasons:

why away from home?

  • We can't reliably prevent him from running away and possibly getting into serious danger. Even so, we have to keep the house tightly locked down when he is here, which is unpleasant and interferes with our activities. We aren't equipped to run a minimum-security prison.
  • Josh's bedroom is also the TV room because there isn't any other place to put either of those two things; this frequently causes problems in the evenings when we want to watch shows which aren't suitable for the younger kids, but Josh wants to go to bed. This is one of the major causes of his evening tantrums, which often lead to sleep-deprivation for the grownups (especially Sandy and me).
  • There are conflicts over space (he seems to need a lot of it, and doesn't like certain activities going on in "his" space).
  • The younger kids feel very threatened by him (and resent having their books and other small items randomly destroyed by Josh).
  • We don't have the energy, focus, or training to deal properly with his needs. We already have difficulty organizing our own lives; throwing Josh into the mix makes things even more chaotic, and Josh is someone who needs order and regularity.
  • Josh's presence makes it difficult for me to keep up with paying work (I do independent computer consulting); I have had to neglect my existing clients and avoid taking on new work. (It also makes getting a regular job pretty much out of the question, unless I were to find an unusually tolerant employer.) This is causing cashflow problems, to say the least.

Josh's brothers (Benjamin and Zander) need their home to be free of the randomly (though not maliciously) destructive presence of an older brother who, though physically adult-size, cannot dependably be communicated with and does not respect others' property. They need to be able to leave a favorite book on a table without worrying that Josh will see a small tear in one page and feel compelled to tug at it (and then the next, and the next), until the entire book is in shreds. They need to be able to be at home without worrying that Josh will suddenly get in a bad mood and start hitting them.

We, the adults in the house (Sandy, Nick, and Sandy's eldest son Mel), need to be free of having to monitor Josh constantly throughout the day whenever he is home -- to keep his juice cup filled, to make sure he isn't hurting someone, to make sure he isn't carelessly destroying something, to make sure he isn't escaping. We need to not have to worry that any yelling or loud/unusual sounds -- or even unusual quiet -- aren't the signs of a potential Josh-disaster.

why a group home?

Josh needs an environment which is less chaotic -- more predictable and less crowded -- than his current home. He needs to be in the care of people who have training in dealing with the daily-life issues which are involved when caring for someone with autism, and who have the energy and focus to apply that training appropriately for Josh's needs.

what sort of group home?

A quality group home in a non-urban setting with a small number of residents per unit would be best for Josh; he does best when he has enough space and not too many people around him. He might do especially well in a farm setting, where simple tasks requiring physical strength may be something which he would enjoy being involved with. (He might also do fine in an urban setting, but he would need to be watched carefully for signs of being disturbed by crowding, city noises, or claustrophobia. Either way, keeping him busy with mentally- and physically-engaging activities is crucial.)

what we've done so far

We are currently seeking a group home for Josh. We have an application in with GHA in Albemarle, NC (when last heard from, they were supposed to get back with us in January). He is also on the wait-list for a small group home in Carrboro (Gaitway, operated by ASNC) (my extended answers for that application are here) and we have also applied for the therapeutic respite program via PATH at the Murdoch Center in Butner; they are expecting to make a decision on April 23 (2008) and inform us by the end of the next day.

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=10549