Josh Gaitway application extended answers

For Josh's Gaitway group home application, some of the questions led me to want to write more than the available space within the form. So I put a shorter answer within the available space, and attached sheets for the longer answers which follow. (I'll try to locate the questions shortly, so the answers make more sense.) The application was mailed on approximately 2007-12-27.

Longer answer to question I-1

We feel that a high-quality group home in a non-urban setting with a small number of residents per unit would be best for Josh; from what we have heard of Gaitway, it meets those criteria. This would be better for Josh better for his brothers, and better for the adults in the family. 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. He also needs an environment where the activities of others don't interfere with his schedule (e.g. the TV is in the room he sleeps in; late-night TV watching keeps him awake and understandably upsets him). Josh's brothers (Benjamin (8) and Zander (10)) 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 all the doors are locked so he doesn't escape while we're not looking. We need to not have to worry whether any loud noises or yelling are because Josh is hitting someone, or (if not) whether they might upset him. We need to not have our work and concentration (Nick is a self-employed programmer who generally works by the hour) randomly interrupted by Josh-related emergencies. We (especially Sandy, who has insomnia) need to not be woken up in the middle of the night by Josh crying or screaming, often for reasons we cannot determine. This really only begins to cover the details of why we are seeking a group home for Josh, but these are certainly some of the main reasons.

Longer answer to question I-2:

These are somewhere between "expectations" and "hopes", as we have only begun learning about group homes and what they normally provide; there is considerable room for negotiation.

Ultimately, we are looking for a place where Josh could live out his days, if necessary, after we are no longer around to be of any assistance whatsoever – but at this point, a situation could fall significantly short of that goal and still be the best available option; we recognize that we may need to settle for a higher-maintenance option for the short term, while continually applying for more ideal solutions until one becomes available.

Expectations/hopes for a living situation

• Ideally: Josh's daily care to be handled without any need for our intervention; Practically: visits no more than approximately once a week, to replenish long-term supplies and necessities and/or to take Josh out for visits, would be reasonable and doable for the near term.
• Daily care items to be handled include:
  • feeding (and washing up after)
  • dressing (selection of weather-appropriate clothing, assistance with difficult items such as shoelaces)
  • bathroom (wiping assistance)
  • bedding to be washed at least once a week, though daily would be better
  • clothing to be changed daily and whenever dirty -- Ideally: washed on-site; Practically: we could visit weekly to bring fresh laundry and take dirty clothes home for washing.
• We do expect that Josh's day will be highly scheduled; half-hour blocks seemed to work best , but there is obviously room for experimentation as he matures and his needs change. There should be significant effort made to communicate the schedule to Josh; the years when he was happiest at school, he was given a pictograph-based schedule at the beginning of each day. Josh does have an active (and largely untapped!) mind and becomes bored very easily; although he does enjoy being left to his own devices for some stretches of time, he will not be happy if that comprises the majority of his schedule.
• We do expect that a significant portion of Josh's schedule will include activities which enhance his long-term independence. This could be as simple as helping with heavy lifting around a garden or farm (if he can overcome his apparent aversion to having pressure on his hands), or as intensive as one-on-one occupational therapy to continue attempts to teach him communicative skills. The schedule should probably include a good mix of different activities along these lines. If at all possible, we would like music-related activities to be a regular feature of his schedule; we should discuss this with you at greater length.
• We do expect that Josh should have access to a TV and DVD/VCR for watching his favorite movies, as well as a computer for playing games. (We can provide these.) The amount of time which is appropriate for him to spend on these activities, and the degree to which he should have control over them, is probably something we will all have to play by ear. He is not reliably self-limiting, but if he is otherwise happy with his schedule he is generally not difficult to pull off the TV or computer. Cues such as an alarm clock would probably work also.
• We also expect that we should be able to take Josh away for visits with family more or less whenever opportunities arise; it is okay if you need a few days' advance notice of such excursions -- though if this is the case, we should probably discuss it with you so we have a better understanding of what constraints you are working with.

Longer answer to question II-6:

Josh is currently living at home (2300+ ft.2 house in an older suburban neighborhood) with:

• Sandy Hall, mother (age 47)
• Nick Staddon, co-parent (age 42, writing all this)
• Mel, older brother (20-something), college graduate
• Zander, brother (age 10)
• Benjamin, brother (age 8)

He has been living with his mother (and younger brothers) since he (and they) were born; they moved to the current location circa 1999. Josh's father moved out in 2001, and Nick moved in in 2002. Mel had been living with relatives due to conflicts with Josh's father; Mel moved back into the house after graduating from college in 2006.

Strengths: Everyone living with Josh is now quite familiar with his habits and can deal with him even at his worst -- for short amounts of time, anyway. Until recently (the past few months), we could almost always find a way to make him happy when he was upset. He also has the benefit of a nurturing (though overworked) mother, an older brother who is fond of him and helps out greatly with his care, and two younger brothers who will occasionally play "tickle" games with him when he is in a good mood.

Weaknesses:

• The house is too small for 6 people, even if they were all "normal" (we have 394 ft²/person – the 1974 American average was ~547, and the 2004 average was ~903, though this probably includes a lot of excessive McMansions); Josh-related disruptions only make this worse.
• Josh's bedroom is in the living room. He originally chose this himself, as there was enough room in the kids' bedroom for 3 small boys, but now there isn't, and there are no other available rooms in the house.
• Having younger, smaller kids around is a temptation to Josh, as he will use them as a sort of "alarm" to get attention when nothing else seems to be working. This is bad for Josh, because it teaches him inappropriate methods of getting what he wants, and it is also very frightening for the smaller children involved (though so far not seriously physically damaging).
• Josh sometimes goes through phases of crying or screaming during the night; his sleeping area is directly under the bedrooms of the adults, and the noise comes through clearly. This is very disruptive of the sleep patterns of the adults in the house. (The younger kids are, fortunately, heavy sleepers.)
• Josh's habits make the house a hazardous place for personal belongings, and as crowded as it is there often isn't a safe place to keep them away from him; things get destroyed, and safe/off-limits rooms become crowded with items we need to keep away from him.
• The front door can't be key-locked from the inside (it's an old-style lock, and the key was lost long ago); Josh knows how to unlock it. If Josh is in one of his escaping moods, we either have to monitor that door or else put screws in the doorframe so it can't be opened. (And we have to hide the keys to the other doors.)
• The house is also Nick's home office, and Josh-related disruptions make it difficult for him to work. Although it might be possible (with difficulty) to relocate the office to a more isolated area of the house, as long as Josh is in the house Nick needs to be quickly available in case physical strength is required in order to contain Josh.