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Posts Tagged ‘Ballston Spa’

It’s been a week since Boo moved to Ballston Spa and into his new home. I ended up taking all of last week off because I couldn’t focus on anything but his impending move and all the feelings – doom, and dread, and so much fear. On the Tuesday before the move I called the Ballston Spa police department and asked if I could stop in to talk to them about Jonah, and then I called the house and asked if I could come visit. Both said yes.

I went to the police station first and spoke with Corporal Mike, who was interested and gracious; he listened as I told him what Jonah’s aggressive behaviors look like and why they will be called to the house eventually. He even offered to come with me to the house that day, but I declined his kind offer. I didn’t think it would exactly be a good look to show up with a cop right from the get-go. But I was glad I talked with him.

Then I drove the short distance to the house. 12 or so of the direct care workers were there doing training, so I was able to meet and speak with them all while they were gathered in the kitchen after having lunch. I asked their names and told them about Jonah and offered up my sincerest appreciation for who they are and what they do. “You guys deserve rock star money, football player money, and I can’t express how important you are to me,” I said. At the risk of sounding like an alarmist, I told them about speaking to the police and warned them about the severity of Jonah’s behaviors. I’d rather be thought an overwrought mother than leave them unprepared. Whatever the case, when I left on Tuesday I felt better.

The next day was the going away party at his house at Anderson, and I stayed to watch Jonah and his peeps enjoy the Chinese food and cake amid decorations declaring “We will miss you, Jonah!” Briana and the other staff, as usual, came through with love to celebrate Boo at his house one last time.

It was strange, and a little sad. I watched my innocent almost-24 year old son play with balloons and enjoy his special dinner, and it was surreal.

How much does he understand this notion of “going away”? How will he handle it, leaving everything he knows to embark on a whole new life?

I knew I was superimposing my own worry onto his situation, and knew I ought not to do that, but also I felt the need to carry it all for us both. As if my worry would somehow alleviate any discomfort he would feel. Of course that’s not how it works.

In my hotel room that night I wished I had more faith – in the process, in the people, in God. I wished I had more faith and I wished I had less anxiety and I wished this transition wasn’t happening at all.

Then, laughing inside, I thought of the movie Wayne’s World, with Garth in his mad scientist hard hat, mumbling “we fear change” and hitting the fake robot arm repeatedly with a hammer.

We fear change indeed.

The day of the move was uneventful, with blessedly good weather, easy travel, no behaviors. Jonah calmly listened to his YouTube playlist on headphones and enjoyed the 2-hour ride north, where we stopped at McDonalds for his favorite lunch.

At the house we set up his room. Briana had come along (thank you so much, Briana!) and she stayed to talk to staff and tell them all about Boo while I took a quick trip to Walmart to buy some plastic stackable drawers for his clothes. I had strongly suggested they remove a heavy wood dresser from the room and secure a nightstand and bed to the wall, giving him fewer things to grab and throw.

After a few hours we said our goodbyes, keeping it casual and undramatic. “I’ll see you soon, bunny,” I told him, headed for the stairs down to the entry level. He followed me and asked “go walk?” I told him we’d have a walk next time, he said, “okay, okay,” and that was it. Awesomely anticlimactic.

Jonah was the first resident to move into this new group home. The next day another individual moved in, and over the course of the next month or so, three more young men will join them. Each resident has his own bedroom, and the house has 3 bathrooms. There are 4 staff people on the day and evening shifts, and 3 on the overnight, 24 hours a day.

On Friday they took him in the van to a day program – more about that another day. And he did get angry about something, tearing up his room some. He threw and broke the plastic drawers I’d bought, along with some canvas photo prints on the wall. I should’ve known he’d bust the drawers, but I thought they’d be a lot lighter than a heavy wood dresser with drawers, anyway. No one got hurt and he didn’t attack anyone, so I call that a win. The house manager told me they’d order him an armoire with open shelving and secure it to the wall.

During this first week I called twice a day, bracing for distressing news but never getting any. I talked to Boo almost every day (Briana did too), and staff sent us updates and photos. I would’ve gone to visit Sunday but we got a big snowstorm, so I waited. It was difficult to wait to see him…my happiest hours are when I’m with him.

He’s doing really, really well. So far the OPWDD transition team and direct care workers seem like a well-oiled machine of skilled professionals and attentive caregivers. I’m so incredibly grateful and relieved.

Thank you all, truly, for your kind thoughts, comments, prayers, and well-wishes.

He did it!

“Walking across a threshold is like stepping off the edge of a cliff in the naive faith that you’ll sprout wings halfway down.

You can’t hesitate, or doubt.

You can’t fear the in-between.”


~ Alix E. Harrow, The Ten Thousand Doors of January

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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.

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