The Never Normal

I live in my mother’s house. She is gone, and I am here, and it is still her house. Emerald carpets and old-fashioned curtains and heavy oak furniture. I took down all the Thomas Kinkade and gave away her plastic flower wreaths and fake potted plants. Now the kitchen window overlooking her backyard is filled with hawk and turkey feathers, hanging stained glass mushrooms, tucked-in drying roses from all the funerals. The sill has tiny trinkets aligned in a semblance I enjoy.

My mother would absolutely hate it — and I laugh and I laugh.

But I also feel kind of bad, because she decorated this place so carefully, cleaned every corner once a week, and took great care to match colors and place items in House Beautiful motifs.

We’re just so different. To make this place my own I’d need to rip out the carpets and put down flooring. I’d have to paint walls and take down curtain rods. Spend a lot of money. Make an effort I don’t have in me at the moment, for there is so much more to handle now.

I did hang my USA map on her living room wall (another turn-my-mother-in-the-grave move). The map hung in my old home, pushpins marking all the places I’ve visited (barring airline layover locations, which I don’t count), one pin at a time until I’ve seen every state, then maybe different parts of each. I can’t find the old pushpins so I bought new wood-looking ones. You can barely even see them against the map, though, so I am now the proud owner of 100 pushpins I’m not going to use. Do I buy new ones in a brighter color or just paint the ones I’ve got? Is it ridiculous to paint pushpins?

How many angels can dance on the head of an unwanted pushpin?

If I focus hard enough on such stupid tiny details of existence, perhaps the big ones won’t have room in my head.

Jonah is leaving Anderson soon for his new home in Ballston Spa. We don’t yet have a move-in date, which makes it difficult to manage visits to the home and other plans and preparations. I’m doing my best. Earlier this week I coordinated his first visit, which was stressful and a lot to plan, organize, and execute. 4 trips back and forth to Rhinebeck and more than a few tears later, we made it happen. We met some of the team who will be working for and with the house, we saw Jonah’s bedroom, and we enjoyed some snacks they thoughtfully had ready for us. We took a bunch of photos – front view of the house, Boo’s bedroom, the bathroom, living room, and kitchen – to create a social story so staff at Anderson can help him understand what’s happening. There’s a lot I can’t say about this because I’m still in the middle of scheduling transition meetings and asking questions about future visits plus the subsequent move, but suffice it to say I have some concerns.

The good news is Jonah did very well, partly because he loves car rides, and partly because he got to see Briana, (who joined us on her day off because Anderson wouldn’t facilitate her official participation), and partly because we went to Chili’s restaurant afterwards.

Going to Chili’s was huge, since I haven’t been able to take Boo out to eat in, well, forever. Not unless you include McDonalds, and even then it was literally 15 years ago last time we attempted it. At Chili’s we asked for a table away from other diners, and at one point Jonah wanted to get up, so Briana explained the geographical parameters of his exploration and he paced a small area, then sat like a champ and enjoyed his burger, fries, some of Briana’s mozzarella sticks (!), and even dessert. Our server was, blessedly, super kind and friendly, and the whole thing gave me hope for making similar outings happen in the future.

Jonah did have an aggression last night requiring a 2-3 person supine takedown. There’s no way to know for sure, but maybe he’s upset about the move. Maybe his ear hurts….he’s got a mass behind one ear that seems to have drained, but the doc is scheduling a CT scan for the 21st and then, depending on results, surgery to remove it after that. Maybe he was just pissed and didn’t want to take his night meds. As usual, we don’t really know.

I do know moving will almost certainly cause more violent behaviors and I hope to God the staff they hire can handle them safely. I’m planning to bring Jonah to the Ballston Spa police department to meet the cops who will inevitably be called to the home when staff can’t manage. I’m writing down questions, talking to other parents, researching recreational and other programs in the area, and campaigning hard for a day program guarantee. You have to be your child’s biggest advocate. I’m in a monthly zoom group with other parents of individuals who are in residential placements…they tell tales of woe and even horror stories regarding group homes – minor things like misplaced clothing, moderate issues like lack of day programming, and huge problems like abuse or overlooked health issues ballooning into catastrophic illnesses. Staff is short and pay is low. There are waiting lists for supports and services. Neglect seems to be the norm. Thank God Jonah will be so much closer to me and his father, so we can be present a lot.

I’m confused and scared by the process, though, and this first visit made it all too real.

I think about Boo moving so far from everything and everyone he knows. I yearn to stop the clock ticking down on the inevitable. I have a very hard time sleeping, getting up again, and dragging myself out of the house – even for Rock Voices and get-togethers and other things I know I’ll enjoy once I get there. The panic rises and it rises and it rises, relentlessly, but I can’t fall apart. I need to think clearly and plan carefully and communicate wisely. I’ll be back as everything unfolds.

In the meantime, there are pushpins to be painted. Every time I put one through the map and into my mother’s smooth white wall, I’ll say a prayer that this will all turn out so much better than I fear.

Please, and please, and please, and thank you in advance, dear God, protect my son.