Josh

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).

current status

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're convinced at this point that he needs to be in a different home, for the following reasons:

• conflicts over space (he seems to need a lot of it, and doesn't like certain activities going on in "his" space)
• the fact that his 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
• the younger kids feel threatened by him
• 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.

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

• Josh facts: things we've learned about Josh
• Josh Medicaid: a minor hitch, we hope
• Josh and The System: the ongoing story of our attempts to get supportive services for Josh
• Josh release form: permission for various entities to discuss Josh with each other
• Josh category with a few things in it
• Josh information for care providers (sitters, etc.)
• 2008-01-31 Josh's IEP at Jordan (draft) - PDF, 7 pages, ~3.5 MB

Needs

Living Situation

as of 2007-12-27

We are currently seeking a group home for Josh. We have an application in with GHA in Albemarle, NC (they are supposed to get back with us probably in January about whether he qualifies) and are currently working on an application for an opening in Carrboro (much closer to home) which sounds overall about as good. (My extended answers for the application to the Carrboro place are here.)

why away from home?

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. We need to not have to worry that any loud noises or yelling are the results of Josh beating up the other two.

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.)

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 very helpful. He seems to have grasped the concept of wiping, and all that remains is some consistency in monitoring him when he is attempting it, and trying to get him to do it each time.

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

• Medicaid and Health Choice Applications
• After School program
• The Arc of Durham: respite care
• The Arc of North Carolina
• The Durham Center
• local Special Olympics schedule
• Benefits For Children With Disabilities (Social Security Administration): can't get anything if you've got over $2000 of liquifiable assets (e.g. savings, stocks); real-estate ownership doesn't count towards this total, but debt (e.g. credit cards) doesn't take away from it either. Josh will qualify when he turns 18, but Sandy doesn't qualify (too much in emergency savings) so Josh can't get benefits since he is in her care. (It's not clear what happens if he's declared incompetent as an adult, which I would think would have to happen; does he still fall under Sandy's financial "wing", then?)