Walking on and jumping stones in the back garden.
Category: Growing a Daughter
Updates and stories about my daughter from China who came home with challenges described in letters—PDD-NOS (on the autism spectrum), ADHD and RAD (Reactive Attachment Disorder). Her learning curve has been steep and therapy is a way of life. School and social interactions are a challenge. Making art is a way of life. So is a vivid imagination.
vermont 2
It is Indigenous Peoples Day. We are in Vermont, ready to leave today to return home. Julia’s day center is closed today. It will rain for most of today and tomorrow. I hope to stop to do some food shopping on our way home and make butternut squash soup for tonight’s dinner.
There the scene is set.
It disturbs me greatly that trump proclaimed today a celebration of “the original American hero, a giant of Western civilization, and one of the most gallant and visionary men to ever walk the face of the earth.” It goes on to say that “[u]pon his arrival, he planted a majestic cross in a mighty act of devotion, dedicating the land to God and setting in motion America’s proud birthright of faith.”
Why does he—or they because that man cannot speak a single coherent sentence. There are way too many grammatically correct sentences and way too much warped “history” to believe that trump had anything to do with the drafting of his proclamation.— but why does he need to lie ALL of the time?
vermont 1
Shelburne, Vermont. Definitely morning frost. And thank goodness it also turned chili at home before we left. The extra sweatshirt thrown into the bags at the last minute will be used!
Ed and I are ensconced in a sweet and small B&B owned by an architect turned painter and her husband, who is very nice, but I haven’t drilled him on his work life. Yet.
Julia is at Zeno Mountain Farm for a five-day, four-night weekend. She went to their fall weekend last year and was invited back for this year. (She has not yet been invited for summer camp, which is my goal for her. Once invited, she can come up every year for the rest of her life. Everyone does, and thus, the wait is long for a spot.) She helped me pack her stuff and then re-pack when we found out how cold it was really going to be. The ride up was pleasant and uneventful until we got to the country road part that goes up and down a mountain for almost 30 miles, okay, a small mountain. Julia began getting angry, anxious, and extremely unpleasant. At one point, she lobbed a sweater at Ed, who was driving. She spent a good deal of time swearing at the mountain, the road, and us. By the time we arrived at the Farm, I had to spend time with her trying to figure out what she wanted to do. (Not at all sure what we would do if she wanted to not go to Zeno altogether.)
I was unsure if we could leave her.
And then she went through the big farmhouse doors, and someone said hello to her. And in almost an instant, or at least a few minutes, she was all smiles. Hugging two people she knew, ready to hand off her meds to the nurse and go to her assigned room on the third floor. When she came downstairs, she was ready to have us leave. She gave us happy hugs and went off to a giant bay window with couches in front of it to watch the sunset.
Kirk
Thoughts and prayers. You know the drill. Second Amendment . . . Guns don’t kill . . .
“I think it’s worth to have a cost of, unfortunately, some gun deaths every single year so that we can have the Second Amendment to protect our other God-given rights. That is a prudent deal. It is rational.”
My empathy is gone for such a monster and obviously at least one person agreed.
news of the week
Julia came home from The Price Center on Thursday with two pieces of news. First, that she had gone to the YMCA with peers. She got on the van and spent the morning on the stationary bike, if she is to be believed. I am not sure she spent the whole morning there, but when she goes to the gym with me, mostly on weekends, she can do 40 minutes on the stationary bike. The big part of that news is that she was willing to leave the building! She has gone on a few community visits, like the zoo, to help with watering plants, but that was of high interest to Julia—she loves zoos, loves watering. I know there is a lot more going out into the community that she can take part in.
Fingers crossed that this is a beginning.
anime boston
We’ve been at the Hynes Convention Center at the anime convention for almost three hours and it is finally worth it. The registration process was not friendly—multiple lines, down long hallways. It took a long time to get a print out of the schedule for the day. They say we should be using an app, but I cannot download the app, I wanted Julia to have a paper schedule to choose from, and after being turned down by a few “officials”, I ask at the accessibility desk and insist. Finally, someone admits that this is the first year they are not providing paper schedules. I insist again, like the mother bear that I am, and a paper schedule is put in our hands but by that time, I am pissed off and grumbling and deliver a lecture on what accessibility means. I’m not going to say it was not needed but I could have been nicer about it. Not a proud moment.
But now . . .
Julia is learning a dance in a k-pop dance workshop. In a ballroom with at least 75 (maybe 100) other young men and women, mostly women. Two women teach on a slightly raised stage. They are clear and good at breaking the dance down into manageable chunks and repeating. The actual singing group, Bebe performing Stay C, is projected on a large screen beside the two teachers. The dance is repeated at 50% and 75% of the speed of the song over and over. The dancers learn small chunks and dance. Every few learned chunks, the teachers review by going over everything that has been learned.
another mother’s day
I brought my laptop to Julia’s year end recital at Berklee. Berklee Institute for Accessible Arts Education. I will not get much time to sit and type but I was pretty sure I would want to get it out as soon as I sat down. I do and we have some time until recitals begin.
This year the musical step taken is that Julia will play her cello without me sitting with her. This is the step forward after a few taken back. Back in Madison, when Julia was playing with Martha Vallon, she always played without someone sitting with her; however, when Julia emerged from Covid shutdown, she was not willing to be on the stage alone, not willing to do her own counting or take full responsibility for what she was playing. I see some change now. It has been a long way back.
hands off rally
[Just in case an FYI is needed: Boston held one of the estimated 1,200 “Hands Off!” protests around the United States on Saturday protesting the actions and policies of Trump and Musk.]
It is 4 pm, ukelele ensemble time at Berklee, and we made it!
We left home just after nine this morning to get downtown and a hoped-for parking space near the Berklee building on Fenway. We scored that parking space and left instruments in the locked car. Then we walked to Boston Common, grabbing breakfast at the Eatery before we made our way to the Embrace Memorial to meet our FUUSN group. When we got there, the crowd was crazy big and I had no idea of how we would find them. The memorial seemed to be the place that everyone, just everyone decided to meet. Thank goodness, for a very tall friend! It was good to find a pod of friends to walk with.
ssi
Just in case someone imagines that the most vulnerable will not be harmed by this republican administration, this morning’s message from a Massachusetts housing advocate:
“If your family member is on SSI, log in (if you are their rep payee), or have them log in, to the Social Security portal. Many people are reporting that the portal is now listing their family member as ‘not receiving payments.’ This happened to me last night.”
SSI provides monthly payments to people with disabilities and older adults who have little or no income or resources. SSI pays benefits a month behind, so people receiving checks today for February. The new notice of ‘not receiving payments’ will effect the payment on May 1. Families have a month to scramble and figure out what is happening.
I did a quick google search of major news outlets and no one, not one left or right is reporting anything.
A Few hours later, this came in from the Arc of Massachusetts:
| Dear Members of The Arc Community, Last night, The Arc of Massachusetts learned that there is a new, concerning message appearing on Social Security accounts that are managed by a representative payee (rep payee). We have seen dozens of reports of individuals logging on to the Social Security Administration (SSA) website to the following notification: “This beneficiary is currently not receiving payments.” We understand this is an area of incredible concern for individuals and families in our community. As such, we are communicating with our Massachusetts congressional delegation and leadership at The Arc of the United States in order to determine answers as to what is occurring here. If you are experiencing this issue, or any other federal-related problem, please fill out our Community Check-In Survey so that we can keep track of these issues as they arise. Stay tuned for more information as we monitor this situation. |
truth and grace
I’ve been composing something in my head—about how Julia new placemet is going and how home is going and generally, although somewhat anxious about the world around us, I am feeling optimistic. I thought that it might be the entry which would kick off the end of the memoir that I’ve been working on off-and-on, although for the last few months it has been mostly off.
I hadn’t written this optimistic mostly-happily-ever-after post because I’ve been busy. Feeling better means catching up and keeping up. Tuesday night, I congratulated myself on getting my tax stuff together to give to the accountant. Slowly, I’ve been feeling rather good and almost organized enough to do for myself.
But you know, the shoes always drop. I’ve been waiting for them.
Monday night, Julia had an extremely runny nose. She had been coughing some a few days before. I gave her some decongestant Monday evening and she went to bed early. When I woke her up Tuesday morning, she didn’t want to get up. A different kind of not wanting to wake up than usual. And so, I told her to go back to sleep and I called her van ride and her program. John, the program director, said she seemed off on Monday and asked if anything was wrong. He said she asked for quiet space. When I asked her about it later, she said she was not feeling that well on Monday.
She slept all of Tuesday, waking only when I asked about food. She ate a late breakfast and an early supper, and after each she went back to bed and sleep. When she woke up Wednesday morning, she seemed well and in a good mood. She got ready and got on the van without any difficulty.
Chasing Joy 