stressful

So where to begin?

On Monday of last week, we had the entry meeting for Alex's new home in Portland. It was at that meeting we found out that the budget was not approved for 2:1 care at the Portland home. Technically, he doesn't have 2:1 now, but they have a float staff always there to help where needed, and to go with Alex and his staff into the community and medical appointments. We were surprised at this, as we just figured all homes had that (seems like a no-brainer!). We were hesitant, but went ahead signing the entry papers as they assured us it wouldn't be a problem, and they'd figure something out. At the meeting I asked about whether there was a lock on the door...this was the one thing I mentioned two months ago when I first viewed the home. I told them that everything looked good, but there would have to be a lock on that front door to make me feel comfortable. At the time, I was told they'd look into it, but it shouldn't be a problem. So, at the meeting when I asked, I was surprised when they said they still hadn't heard if it had been approved. They had 2 months to find out, what was the delay?

Alex was set to move in on Saturday (8/6), but still hadn't heard anything about the lock on Friday. I sent an email asking about it, and finally got a response at 3:30pm that the lock had not been approved. What?! So, at 3:45pm on a Friday, I'm frantically calling around to get someone on the phone before everyone leaves for the weekend. Since it was so late, and we couldn't get a hold of everyone, we decided to go ahead and have Alex move as planned, and make it a trial run of sorts.

Alex had a rough time on Saturday, which was to be expected. He liked being out in the backyard, but took him a long time to work up the courage to go upstairs and see his room. The old staff left soon after we arrived, and we were with Alex for about 3 hours until we had to leave (appointment for a sensory deprivation float...I'll post about that another time). He kept wanting to get into the bath to calm down, but the two other kids there like baths just as much as Alex, and there was soon no more hot water. By the time we had to leave, you could tell Alex was ready to leave. He was starting behaviors, and without a bath/shower, was having trouble calming himself down.

Saturday evening, we returned to find him in behaviors still. They said he had some calm moments, but he was pretty upset most of the time. We stayed as long as we could, but had to leave and get dinner eventually.

Sunday morning, we checked out of the hotel and went back to visit Alex one last time before heading home. He had slept fitfully in his big rocker/recliner that was brought up from the old home with him. He woke at 2:30am for the day, so was extremely tired. When we first got there, he seemed upset by our presence...like we had abandoned him once again. I'm not sure who his staff was that morning, but no one had Alex in their line of sight as they were supposed to. Two staffers were sitting in the living room, and one was doing dishes while Alex was in the garage/sensory room by himself. They had also disabled the alarm on the front door. It was a big change from the day before when the house manager was there, and everyone was up moving around and energetic. I could be totally off-base here, but it seemed like they didn't really interact with any of the kids unless a kid came up to them needing something. They weren't playing with them...just sitting on the sofas talking amongst themselves.

That was the last straw. With the lack of 2:1, the lack of a lock on the front door, the disabling of the alarm...we wanted Alex to return to his old house. I could go into exhausting details of the many emails that were sent back and forth, but I won't. I'll just say that tomorrow at 9:30am he will be picked up and driven back to the old house. I'm just happy it was able to happen so soon. The new agency is pretty ticked at us right now, and I feel bad about the hassle we've caused...but we need to feel our son is safe. All their assurances about how they're sure they can deal with Alex's needs don't mean much when we were assured a door lock shouldn't be a problem.

There were some really positive things about that home too...the main one being the house manager was awesome. She was ready to help us try to get his medical marijuana approved to be used in the home (not sure it would have worked, but the fact she was on the same page as us was nice), and she really seemed to know how to deal with the employees as a manager, rather than trying to be friends with them. The proximity to his health care was great too. Oh well.