Monday night I joined an Anderson Family Partners call and they discussed the transition process for students into adult placement. Participants asked questions about definitions and possibilities, hoping for good news about the future of their loved one…of an agency willing to take them on as an adult. There is an Anderson agency that provides adult placement, but any hope of transitioning to that program was dashed quickly by one of the staff members on the call before anyone could even ask. I forget the language they used to announce this, but I remember the reasons were not very clear. Something about finances and impossibility. I wish they’d been more transparent about the exact problem so we might at least consider tackling it, but I was in no mental state to speak up.
You see, in the middle of this discussion, my phone rang; it was someone from Jonah’s house calling to tell me he was just in two takedowns, one right after the next, and had attacked two different staff members — which of course distracted me from the transition process call. I’m so sorry, I told them. Boo is very sorry. It was out of the blue, I am told. He was fine one minute and having a violent behavior the next. It’s all too familiar.
Every time Jonah starts to look good on paper, he has another aggression. I wonder if I should even be typing this — will it hurt his chances? I reckon not, for it’s all documented and the agencies will find out anyway. It’s the agencies, after all, who need to consider taking these kids. They have files on each student, and it’s my understanding that OPWDD (Office for People with Developmental Disabilities) reviews them regularly, a few times a year at least, and conducts meetings with Anderson to discuss the individual in question. But still no agencies are considering Boo.
I have a list of the agencies located in different counties in NYS, and I have been encouraged to research them…find out which group homes offer tours, talk to other parents, advocate to get Jonah into one I like. But during the discussion they said when a placement opens up, you pretty much have to take it. What if you don’t? I wanted to ask. For that matter, will it do me any good to advocate for this place or that place when none of the agencies are even considering my son – and even if they were, there’s really no choice anyway?
I’m sure it’s all about money – and staff and resources, which means money. I figure it can’t hurt to do research and know as much as possible about the agencies, no matter what happens, for knowledge is power. And power, my peeps, isn’t something I wield all that often. Not when it comes to a lot of things, but especially not when it comes to my son.
On Saturday I drove down to see him for Anderson’s Thanksgiving-themed family lunch. I met Jonah at his house and we walked together to the school building. I figured he’d be able to guide me to the cafeteria, and sure enough he did.
We got in line and he took utensils and a tray, and I wondered how well he would communicate with the servers behind the glass guards that protected each dish. Hi Jonah, one person said. What would you like? Fascinated, I watched as he pointed at this and said no to that, declared “pumpkin” when asked which pie he wanted — I didn’t even know he liked pumpkin pie! — and chose a table for us. He made short work of the mashed potatoes and pie, mostly, then asked “more?” – and rose from our table before I could answer.
I wasn’t sure what to do at first, but I figured it’s his school and his cafeteria and he probably knows what he’s doing. So I sat and watched him as he returned his tray to the proper place and headed back into the line. It looked like he may have cut in front of a few hapless fellow diners, but aside from that it was smooth going. He took another tray, moved through the line again, and came back to our table with a plate piled high, his independence an amazing thing to behold.
Afterward he asked for walk, which of course I’d expected, so we made our way first one way, then another, around the campus, listening to his playlist. It was a beautiful sunny day, and we both shed our sweatshirts before we were done with the walk.
I left happy and refreshed by our time together, and I’m grateful every time we have a good visit. But I’d be lying if I said I wasn’t a little bit afraid on our walks, especially when we’re out of sight of the residences and the school building. Then again there is fear, nowadays, in everything I do. Fear of change and fear of stagnation. Fear in walking through my mother’s big empty house and fear in not knowing where Jonah will be living. Fear of making the wrong decisions, for there are many to make. Waking fear in early black mornings and daytime fear of being found out, of being exposed, of the big reveal: me as broken, stupid, grieving, useless. Nighttime fear, always in the too-fast pounding of my heart and the elephant sitting on my chest.
This is how it is right now but it will not always be so. Pema Chödrön, one of my favorite non-fiction authors, suggests offering Fear a cup of tea. Saying “this too” to the experience. Noticing where it arises and what it feels like. Getting to know it, however it chooses to arise.
But mostly I want to throw the cup of hot-ass tea in Fear’s fucking face. Let Fear feel afraid for once.
Here’s the part where I return to being thankful, for tomorrow is Thanksgiving – and thankful is a good mental state to embrace, so I embrace it often. I’m grateful for my friendships, my relationships and my relatives, my co-workers and peers, my Guster, and all of you helping me keep it together.
And there’s a big event in 2024 for me to anticipate with full-on geeky joy: the 50th Anniversary Festival of the TV show Little House on the Prairie, taking place in March in Simi Valley, CA. I’m totally going. And maybe, just maybe, we’ll get Jonah to the ocean this year.
I wish you all a happy Thanksgiving and, if I am not back to post again before then, happy holidays as well.
The Never Normal 