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Posts Tagged ‘transition’

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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Two years ago Jonah and I attended the Anderson prom, which I thought would be his only prom – but when they told me it was actually a biennial event, I was excited to go again and be Boo’s “date.” He and his peeps got to ride in a party bus to the decorated recreation center pavilion, where a DJ spun tunes and everyone celebrated together. He’s more walker than dancer, so we mostly promenaded in and around the dance floor, hand (and Gatorade) in hand. They served buffet dinner after a while and I was kind of amazed at how well everyone waited in line for their food. Even Boo!

Maybe the best part about the prom was the camaraderie and understanding among the families and friends attending. At any given time, one of the students might lie on the ground, screech, run in circles, remove clothing, clutch the DJ’s arm, etc. Really anything that might be embarrassing or inappropriate at a regular prom was fair game here. Yet no one endured stares or judgement in this very safe space, because we’re all in this together.

I’m so grateful to Briana and everyone at Anderson who helped plan, decorate, serve, supervise, and work hard so these youngsters could participate in a “normal” school activity.

I’m even more grateful now that we are nearing the end of Jonah’s time at Anderson, for many of the privileges he enjoys there will also end once he leaves. For the last 14 years, he’s lived in a 100+ acre gated campus environment with a school right on the grounds.  He’s got access to an inground pool, recreation center with adaptive play equipment, a school/day program, all kinds of activities, and a house full of people who already know and love him.  He has dozens of sets of eyes on him every day to ensure his safety and well being. He enjoys events on campus like the prom, easter egg hunts, trick-or-treating, Christmas tree lighting, and other seasonal celebrations. He gets to participate in outings like autism walks, trips to the Dutchess County fair, and a day at the waterpark. When he goes for a walk on campus, staff with him have walkie talkies and can call for quick help/backup if Jonah has an aggressive episode.

After Anderson, he’ll have very little of what he has there and there’s nothing I can do about that. There are few campus-like environments for adults.  The only one I know about is in Sullivan County, even further away from his father and me than he is now. If I had the money, I’d build one right here in the Capital District and oversee its construction, staffing, and operation. It would have the best of everything, of course.

I thought we could fly under the radar forever at Anderson, but we can’t. So Boo will be living in a supervised IRA (individualized residential alternative), a traditional family-style group home with 24-hour staff support and supervision. There’s one in Ballston Spa (which is about an hour closer than Anderson) and OPWDD has officially offered us placement.

Do we take it? Is there a better option? What happens if we say no?

Normally I could at least tour the house and talk to staff. I could get a read on the well-being and happiness of the residents. I could find out what their schedule is like and what kind of day program is available. I could talk to the parents/loved ones of individuals who already live there and ask pointed questions. But this house is empty. The previous residents, I’m told, had ambulatory needs that couldn’t be met there, so they were moved out. The house has been vacant since December. That means I can’t tour anything but an empty space and I can’t rely on anyone’s story or lived experience.

I went into panic mode: I am suddenly on an episode of Let’s Make a Deal and Monty Hall himself is offering three curtains, behind each of which is a prize. First I’m offered a dining room set. Then I have the choice of keeping it or trying one of the other two curtains. Behind one of the other curtains is a Cadillac; behind the other is an elderly goat chewing on a bale of hay. My choice is final.

Is this IRA the dining room set or the Cadillac? Could it be the goat? How to choose? After all, it’s not a game show. It’s Jonah’s future. Barring a major problem, he will live there for the rest of his life. How can we have so little information with which to move forward?

First, I emailed any person, place, or organization I could think of who might be able to offer guidance. I heard lots of things. More than once I was told there are thousands of individuals awaiting placements like the one we’ve been offered, and people wait for years in situations far less comfortable than Anderson. Some end up living in the hospital because they have nowhere to go. We were advised to take the placement.

I requested a zoom meeting during which I could ask questions, and Andy came up with other questions I didn’t think of. I asked Briana and her supervisor from Anderson to be there too. During the meeting, someone from the IRA team was at the house and showed video by walking around with their phone, pointing out the living areas and bedrooms. Aside from a dedicated office space on the basement floor, by all appearances it is a normal looking house on a 30-mph road with sidewalks in a neighborhood. It does not have a pool, or a backyard to speak of (the back is a paved area for cars). There’s a small patch of woods between the house and the one behind it. A wrought-iron fence forms a short path area in the front that appears to have a locked gate, with enough room for some small porch furniture.

I asked how many people would be living there, and what’s the ratio of staff to residents, and how they’re trained, and how visitations work, and how transitioning from Anderson to the new house will work, and how he’ll get his medications and go to the doctor and eat food he enjoys, and how he’ll be able to go for a walk or to the local park or to the town pool – and a whole host of other things. I held back tears that threatened to come every time I opened my mouth to speak. I held back the weeping, the screaming, the pleading demanding convincing insisting arguing…I held it all back and I forced myself to breathe and I forced myself to stay calm. I told them no matter how many questions I was allowed to ask, there would always be more questions. They assured me I could ask them all, that there would be many more meetings, that this would not be like ripping off a band aid but rather a slow and deliberate process. They really did try to be reassuring and kind. They really did seem to understand my worries and concerns.

The last thing I asked was how quickly we needed to make the decision. The answer was not immediately but soon. And so we decided to take the placement. Just this morning, in what felt like a monumental act, I sent an email to the representative at OPWDD telling her this. She emailed back almost immediately:

That’s great news!  I was going to send you a list of people on Jonah’s team today.  Also, there will be more meetings. Thanks so much for your help and patience.  I know that the process can be difficult.

The process is difficult indeed, already, somehow – and nothing’s even happened yet.

I think of Guster’s song Come Downstairs and Say Hello and its wonderful instruction:

Be calm. Be brave. It’ll be OK.

It will be OK, because I need to believe it in a way I’ve never needed to believe anything before, if you don’t count August 16, 2011, the day he left our home to live at Anderson.

I’m planning to ask a lot more questions (and please feel free to say what you would ask). I’ll research the community and its programs and services for people with disabilities. I’ll contact the local fire and police departments to ask about emergency preparedness plans for his house. I’ll tell OPWDD to give my contact information to all the other families of people who’ll be living there, since I can’t legally ask for theirs. I’ll paint his room an ocean blue and stick glow-in-the-dark constellations on his ceiling.

I’ll see if I can win him that Cadillac.

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I’ve got good news and bad news.   To decide which to write about first, I’ll flip a moneycoin piece.  Heads = good news first, tails = bad news first.

Bad news it is.

Jonah’s recent behavioral team review from Anderson tells the story well enough:


9/11/2018 
Reason for Appointment: BTR (Behavioral Team Review)
Chief Complaint: Aggression, Non-Compliance

There has been a significant increase in the intensity of Jonah’s aggression.  Recently dislocated teacher’s arm during restrictive management. He has also bitten people. He seems more on edge.  Episodes of aggression are not frequent but when he is aggressive it has been extremely intense.

Currently the team is trying to get approval for 4-person supine restrictive control.

Will increase clozapine dose by 25 mg/day.


As far as I know, Jonah’s teacher is still out on medical leave.  I hate that it happened and I hate that it was Jonah who hurt her.  I emailed her and sent an “I’m sorry” card;  Andy and I are worried about her and upset in a sickened kind of way, having gotten so used to the mostly smooth ride of spring and early summer.

A 4-person takedown is a big takedown.  If you’ve been reading my blog you might remember me talking about 2-person takedowns.  Somewhere in there they increased it to 3, and now 4.  The drug increase has made him sleepy;  it’s strong medication, the clozapine (or Clozaril, its brand name) and has a sedative effect.  It’s also the only thing that’s worked, really, at all.

And so this wet, hot summer has been peppered with these spikes in Jonah’s aggression.  One time it was just Jonah and Andy, in Andy’s apartment, and it got pretty hairy.  I remember speaking to Andy on the phone the night after it happened.  “I’ve still got him,” he told me.  I knew what he meant — he still has the edge on Jonah, strength wise, if only by a hair.  Andy does not have 3 other people to get both Jonah and he through the incidents safely, as they’ve deemed appropriate and necessary on the school campus.  So a cabinet in Andy’s apartment was destroyed, and both he and Jonah got more than a little scratched and bruised.  There were also a few hair-pulling incidents with varying levels of hurt and pain – although Officer Scattergood was our last run-in with the five oh.

There is good news, though.

Between incidents of extreme aggression, Jonah’s progress report (from 4/1-6/30/18) tells us “Jonah shows continued improvement in Transition Development programming, participating in daily living and pre-vocational skill activities as well as the on-campus work program and garden.  He’s learning to clean surfaces, wash dishes, sorting/folding/stacking laundry, making the bed, using the washer and dryer, loading & unloading the dishwasher, and setting the table — but he needs visual, verbal, and sometimes gestural prompting for these things.”

“He also works on meal prepping and clean up, including cutting, measuring ingredients, and using kitchen appliances. Jonah does especially well at the task of passing out plates, cups, and utensils to classmates.”

I even have photographic evidence of his cake-making skills, kindly provided to me by one of his residence caregivers, Tonya, just last week.

I don’t know if I’d believe these things if I didn’t have the pictures.  He’s much more independent and capable at Anderson than he is with us…partly, I think, because more is demanded and expected of him.

“He has been doing well with engaging more during group OT (occupational therapy).  He has been much more open to trying all the meals that he helps make!”

Wonders never cease.

 

 

 

 

 

“Jonah also completed pre-vocational tasks that developed his ability to sort, package, sequence, match, and assemble.  He can almost independently retrieve a task, perform that task and return the task.  However, Jonah needs encouragement to complete the task in a timely manner.  He can stay focused through the task and when finished he is able to put the task back with verbal prompting.  Jonah enjoys the color sorting.  This quarter there were new Vocation Specific tasks that included filling envelopes, folding paper, and labeling mail.  Jonah did well with these new tasks.”

“Jonah participates in several on-campus jobs including working in the garden and janitorial/recycling tasks.  While Jonah needs support learning new skills in the garden, he needs minimal assistance in completing his janitorial tasks.  During garden Jonah completes tasks such as watering plants, digging soil, weeding, and planting seeds.  Jonah enjoys watering the plants and sometimes himself and staff too!  Jonah continues to make deliveries around the school with the daily newspaper; he is doing very well.  He can almost complete this task independently.  Jonah continues to help assemble, package, and count items for the med-kits for surrounding classrooms around the school.  He continues to do well with these tasks.”

“Overall, Jonah has been an active participant in all areas of the Transition Program.  We will continue to work on accomplishing tasks more independently.”

This written by his teacher, about 6 weeks before he injured her.

Here he is in the pool with her, earlier in the summer.  She’s young, vibrant, and happy – full of energy and empathy.  She has often told us how much she enjoys having Jonah in the classroom.  I wonder how she feels about him now.  I wonder how she feels now about teaching these kids who attack and stim and struggle.

I hope she knows how important she is and how much we appreciate her.  No matter how many times we thank her and Jonah’s other teachers and residence caregivers, it will never be enough.

There is a lot more to say – more news of a different sort – but that’s a different entry.  Let me get this one out there first.

We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds.  ~ Aristotle Onassis

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