This is mostly just me whining tonight. No agenda, no real updates to speak of. Alex’s situation is more or less the same as it’s been for a while now, and I’m mostly just waiting to see how prop 19 does before I’ll have much else to say about the bigger picture.
Alex’s visits have been rough in the past, and we’ve never really seen any stability there. But I’ve noticed a trend recently that’s really rather depressing, though not terribly surprising.
Early on, Alex hated it when we left, especially back when we still lived far away and were visiting once every two to four weeks. It was heartbreaking. More than once he tried to follow us out when we left. We were so sad to see his reaction: ecstatic to see us, and then devastated when we left. I am likely misremembering the frequency of this kind of situation, but I do know it happened at least once for sure, and it feels like it was many of the first visits.
Tonight confirmed what I’d been seeing recently, though, which is basically a shift in Alex’s perception of “home”. He no longer feels that where we live is a place he belongs. Some visits, he seems glad to leave or glad to see us leave (if we’ve gone to his facility). Friday, in fact, the staff mentioned Alex had been having a wonderful day, but when I arrived he shifted into a very moody and raging little boy, and seemed only to want to be around the staff member who was currently caring for him.
Tonight’s situation was a bit more definite in my mind. Alex was dropped off for a home visit, and after about five minutes of happiness (not even enough time for a few nice snapshots) and twenty minutes of calm-but-unhappy, he started pulling us to the door and giving us his shoes. This generally means he wants to go somewhere, and so I decided to ask him what he wanted. He understands a lot of words, he just can’t speak them himself. I asked him, “Alex, do you want to go back home now?” He got visibly excited and pulled me again to the door. I had my wife call the staff members to come and pick him up, and he left after spending less than an hour with us. And most of that time he was clearly very anxious. When the van arrived to pick him up, he was significantly calmer, and didn’t care to wait for my wife to give him a proper goodbye – he jumped into the van and waited for them to leave.
The fact that “home” means to him the place that he eats and sleeps isn’t really what got me — obviously that will happen, because for all intents and purposes that is his home. What’s sad is that he seems to feel more comfortable away from us now. On Friday he didn’t want to be around me. Tonight, when he kept pulling me to the door, I told him I’d like him to stay for a while longer, I wanted to spend some time with him. He actually hugged me for a bit and then pulled me back to the door. I usually hug him just before he leaves, so I can only assume he was saying “good bye” in the way he knew best. I honestly can’t remember him ever initiating a hug before tonight, so it’s tough to see it as any kind of coincidence. He just wanted to let me know it was time for him to go.
I just feel like I’m losing him, and there’s nothing I can do about it.