It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured. Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch. He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.
Our summer routine: my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence. About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for. Andy picks Jonah up for visits a few times a week, and Jonah adores his father. So as soon as we enter the code and open the door, Jonah walks out immediately. I don’t take any of this personally. Whenever I’m not there, he asks for mama, and I know he loves me too. It’s all just part of how he rolls.
Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day. When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.
Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it. Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice. We head back to the apartment as Jonah eats his treat. I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me. Sometimes he asks for kiss hand and gladly I oblige.
At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.
There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings. Sometimes he asks for Jungle Book or Oompa Oompa, his attention span varying in length but always longer than it used to be. Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow. He still, on occasion, enjoys his bathtub brunch.
Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers. I ask “can mama lie with you?” and he always says yes. So I take off my shoes, make sure his are off, and get in with him. Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt. I gently move his arm and he giggles again but stays still. And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back. Usually we both fall asleep for an hour or so like this.
I sometimes hear my mother and Andy talking. They argue politics or talk about Boo. Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.
Like I said, visits this summer were awesome for me. Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices. “Lie down with us,” I tell her, and she could, but she doesn’t want to. Stretched out on the bed, you can see just how long and lanky he’s gotten.
Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right. At least he comes in the apartment, even if it’s only to nosh and nap. It’s more than good enough for me. My mom is getting older, though, and she tires easily. It’s a lot for her to drive down. Lately I’ve been doing the driving, both ways, in her car. And if I can’t visit for whatever the reason, she hasn’t been going either.
It’s hard on her, and on my dad too, I’m sure. Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren. Photos and stories of them at the beach, in a play, on vacation, at graduation. My parents wanted that too. They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.
Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah. So I went to a required Front Door orientation about a month ago. Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago. Because it’s an adult service, though, some of the details will change. Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).
And so here we go. So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between. Aside from that, we’ll cross bridges and make decisions as we come to them. It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate. If we had to make such a decision today, it might be very different from one we’d make 6 years from now. I guess we need to decipher the most likely trajectory and go from there. We really are at the very beginning of the whole process.
To be honest, I don’t like thinking about it. It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do? Best to educate ourselves about options and forge ahead.
But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive. Last year he was so violent, he spent Halloween in the hospital. And sure enough, it seems we’re in for it again. Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right. But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.
I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again. I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause. I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.
My solution this year is to schedule more things with friends and force myself out of the house. Almost always I end up enjoying myself, and getting out is healthier for my head. It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo. Amazon.com and grocery delivery make it that much easier to stay in. It’s no good for me to sit and dwell or go numb and listless.
As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends. I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing. It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes. This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me). I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too. I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit. We want Boo to be happy.
I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.
There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too. I just found more siblings – a younger half-brother and sister on my birth father’s side. They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.
My new brother and sister both seem interested in at least emailing, which is more than I’d expected. Given the situation, I won’t mention names or post pics. I was born just days after our father married their mother, which doesn’t sound very good. The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.
Who’d have thought this only child would end up with so many sisters and brothers? I wonder if there could be more even I don’t know. Life throws curve balls. I’m as ready for them as I could be, I reckon.
Here’s to a happy Halloween for Boo, and all of you! I’ll keep you posted on that storm, if it lands…
The Never Normal 