I’ve been trying to find an appropriate placement, probably a CBDS, for Julia for 18 months now with absolutely no luck. If you or someone you know is going through the same challenge, especially if you live in Massachusetts but elsewhere as well, I’d like to talk to you. Please leave a comment below or email me at suzbuchko@gmail.com.
Author: Suzanne Buchko
a big ask
I am reaching out, looking for some help. Some of you may know that I have not been able to find appropriate day programming for Julia.
Julia turned 22 in January, and she was finished with school related programming. She was not ready for employment or further education. I hoped find an appropriate day program for her, specifically a Community-Based Day Support (CBDS) which develops and fosters core skills and vocational attributes necessary for social and vocational independence. However, ever since the Covid lockdown, it has been very difficult to find a place in a CBDS. Most programs citing the difficulty in finding staff.
At present, Julia attends programming that does not meet her needs and is not helping her to foster core skills or vocational attributes. I have been working for the past 18 months to find her an appropriate program but as this year ends, I don’t see that she is any closer to good programming than she was when she left school in January.
Julia is eligible for services through the Department of Developmental Services (DDS), and I’ve turned to their Participant Directed Program (PDP) to meet some of her needs. Julia has been funded for three days of support through PDP; however, while the PDP offers flexibility, creativity and opportunity to individualize supports for an individual, it also expect that the family will identify, hire and train the support staff.
the ride
This morning, Julia is taking The Ride, Massachusetts’ para-transit service for people who can’t use public transportation or drive due to disability. She is going from home to Elliot House and back again. She needs to be met on both ends right now. It is a restriction that can be lifted in the Spring if she does well.
And this gives me an extra two hours in my day, plus no energy drain from the driving. I did not realize that there was an energy drain until we came back from traveling. I had not been responsible for driving for 6 weeks and I felt the difference almost immediately upon taking it up again.
This morning, Julia just left, and I feel the quiet and peace settle over this house like it never has. Like the old feeling when she was in school and the bus came to get her or she went to catch the bus. I feel rich beyond measure. This is a moving on from the 11 months since she has been without programming. The Ride doesn’t give her programming, but in a sense, it gives her just a taste of her old school life when she had direction and support. I didn’t know that she would feel this way about a para bus picking her up but this morning, after 3 rides this week, it clearly does. For the first time in 11 months, I feel like the services cliff that she fell off in January is becoming a ramp.
coming home
Coming home: Get on a bunch of planes. Watch a bunch of movies and eat the weird combination of what is airplane food—My favorite food during our longest flight today from Tokyo to San Francisco was two saltine crackers with a pat of cream cheese. Exactly like something I’d eat when there was nothing else to eat in the house. Try to sleep mostly unsuccessfully and ultimately stumble from plane to plane to immigration/customs to plane and to a lovely friend who drove us home.
After thirty hours traveling, those beds in Newton were incredibly comfortable!
But to back up —
On our last night in Hanoi, we had a hot pot supper—various kinds of meat and vegetables that are brought to the table raw along with a pot of boiling broth on a heater. It’s good and I’ve liked the idea both back home and in Hanoi. We’ve eaten it a number of times in Vietnam, but truthfully, when I go out to eat, I’d much rather have the cook do the cooking instead of one of us at the table. Still, it seems like a favorite with the people of Hanoi, including our friend, Tra My.
last weekend
We’ve been walking a little slower, trying to savor, trying to memorize, and still, at the same time, trying to stay in the present. We know that we are looking at things we’ve grown use to for the last time. So many streets we haven’t walked down and restaurants we haven’t eaten in. We have gotten better at crossing streets with and without traffic lights and drivers of motor bikes and cars that consider lights, lanes and one way signs as mere suggestions. We are regulars at that pho restaurant on the sidewalk half a block away from our apartment and enjoy so much all the fresh fruit juices that we drink every day.
Lots of flowers were planted during out week away in Hoi An. So nice to see them.
Hoi An in the rain
And I am missing home stuff. After a month and six days, I will allow myself such feelings. Mostly missing is of three varieties: First, I miss Cheshire, Justin and Wilbur, and being a small part of their lives. Pictures of Wilbur attests to six weeks of him growing. Even at home, I don’t have an independent relationship with Wilbur—yes, he is one—and so it follows that so far away feels like I will be a stranger when I return. Or at least, I believe so right now.
Yes, a bit of self-pity. Even during high adventuring.
Second, I miss my church community. I get the emails! The list serv with announcements. A few weeks ago, I felt like I was keeping up with the goings on. Now, I feel cut off and missing—the Ferry Beach weekend, a special choir concert, the early November Music Sunday music, the 175th birthday of the church lunch. And lastly, I miss my HILR community—course work, lunches, special concerts and lectures. I am grateful and happy that I’ve kept up with the one zoom class that I have—those late night class meetings have been an interesting comfort.
weekend camping
I am behind on writing because I am keeping up with my HILR memoir class, so I need to do a few photo dumps. We headed out of center city Ha Noi about an hour north to Soc Son, although still in Ha Noi.
museum of ethnology
Another photo dump from the museum of ethnology in Hanoi. We spent the afternoon, we could have gone back for more. The outside recreation of types of housing was wonderful. I wish we had a guide or an audioguide but we gained some knowledge and had a great time. Also, cafeteria/restaurant was good.
bits of Ha Noi
Surprises around every bend. And always good to be just a little prepared. Perhaps a little open and curious.
Case in point: this morning’s iced coffee—expresso with almond milk and fresh milk (no skim or 2% anywhere in sight) and I’m sure a little sugar—contains little coffee “jellies.” The first jelly slips up in the straw and surprises me. A worm? Okay, it is nothing like a worm but . . . and it is just one of many of these exquisite jellies. Julia’s chocolate soda drink has chocolate jellies.
Also, a find from a few days ago—tiny and perfect cream puffs. Oh, to die for! We are walking and sweating so much that a few cream puffs at the end of the day is of no consequence.
It is a balmy 80 degrees this morning and boy, it feels like autumn. Or early summer. Just something lovely. And a breeze!
We have been very lucky with the air conditioning in all of our lodgings. It is neither too hot or cold and adjustable. This has saved us over and over—mid-day naps when the sun is unbearable—and then, out again when the sun goes down. The sun goes down pretty early or rather, we are experiencing fall sun sets with summer temperatures.
Sapa
Once again, I’m sitting again while Tra My and her mother cooks. I go to restaurants and people cook for me all the time, I visit friends and they cook for me, but I do not usually sit in my own kitchen as someone cooks for me. And I rarely sit and do absolutely nothing while someone cooks in my kitchen.
It is unnerving.
Tonight the dinner party is vegetarian—tofu and soft tomato. I have no idea what that is but there is lemon grass, cabbage, maybe some garlic. Everyday, well almost everyday is a culinary adventure.
But I want to start writing about our Sapa adventure. A week ago tonight, we took the night bus from Hanoi to Sapa. The ride to Sapa will be a separate post.
Chasing Joy 