Tag: post-high school

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.

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back to a drawing board

Disappointing email on Friday morning came in as Julia and I arrived at an anime convention in Westford.  

Nice thing about Another Anime Convention, yes, that is its name, is that there is a special ticket rate for those, parent or caregiver, who are there only for a kid. “Parent in Tow” is on my badge and I didn’t even have to explain why I wanted the rate accompanying an adult. The badge had some limitations but it was plenty for us.  I went to the “game shows” and the panels, including one very interesting one about women writers and performers in ancient Japan. Julia most enjoyed the hand sewing workshop that was pretty useful and very well done. The “Parent in tow” badge was about a third of the cost of Julia’s day badge. Convention tickets are expensive and I appreciate the break. So good on them!

Back to the email.  It was from The Price Center. The day center that I toured in August and was so excited to hear that there were openings in the program that I was most interested in for Julia. Back in August, it took more than a week to get Julia’s DDS referral packet to them. I don’t know whether that delay was the cause of the disappointing email. Really, may have or maybe not, but if it was, it is pretty rediculous to think Julia lost out because her referral packet was delayed by days.

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beginnings again

It is a beginning of September and my traditional time to return to what fuels my creativity and thus, my soul.  Cool weather, the first sight of the un-greening of leaves, and children back to school.  And a morning ritual that I have abandoned during a summer because who in their right mind can be disciplined during the hot, sun drenched days with a demanding offspring. But right now, the house is quiet, I am sitting at my desk and the only thing to do is to look for and return to how work happens. It is a return and it is always new.

I seem to have many loose threads that go together fine in my living them but don’t make for a cohesive blog post.  And I haven’t spent enough time writing this summer to keep them all going.

Baby Alfie is two weeks old. He has presented himself as a child who needs to be held to sleep which is tough on his parents during the night, but as the visiting grandma of the day to sit and hold a little baby who is happily sleeping in my arms is such delight.  He who I did not expect continues to surprise me. There is no doubt that I have loved my children and Wilbur, but I have never been drawn to infants.  This one has opened a new place for me.

And it is worth noting.

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more catch up

I have catching up to do and no way to gracefully ease into it.

First, the cat. Muta is still with us; however, it is hard to really know how he is doing. I was waiting for some definitive answer. Some diagnosis and prognosis, but I don’t think I am going to get either.  

For about a week after our weekend in the hospital, he was about 80% his old self.  He wasn’t that keen on going outside but he jumped on the couch and my bed and sprawled out when he napped during the day.  He was on an appetite enhancer.  He ate the canned food that I had.  I gave it to him in small amounts—about a quarter of a large can at a time. He willingly ate it.  I think it was not enough to really satisfy him but he stopped throwing up. I imagined he was getting use to being fed 4 times a day; however, over the last weekend he began to throw up again. At least, once a day. On Monday, I went to a vet. She did a follow up blood test to see where his liver and pancreas related numbers were. I haven’t heard from her yet. She also did a bit of hydration for him and gave him a shot of a nausea suppressant.  She said to continue with the steroid until she got the blood work back. 

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babka and ambition

Another grey, wet and cold day.  Am I ever going to put my winter coat away in the hall closet?  I’ve put it away and taken it out again twice.

This morning supervising Julia at the library during her volunteer time. Observing what she can do and do well, and how much she gets in her own way. She has so much more ability than she uses. Mood and lack of regulation ability dampen potential. Trauma masks the possibility of ambition, and without ambition, goals are hard to come by. It’s the goals that have helped me push through bad days. I’ve lived through many a hard time murmuring “eyes on the prize.” When you can see no prize, where do you ever put your eyes.  

This morning, my friend wrote, “you’re not supposed to ace this.” I sigh. I guess I’ve always wanted to ace all my “this.” Time and age and especially Julia have smoothed out so many of my edges. I accept a good deal more and haven’t thought much about acing for awhile.

Living up to potential is not always what I imagined it to be. These days, acing my this is more about support and patience than it is about getting anywhere, accomplishing anything.

Trauma and distraction crowd out aiming for a prize, staying on task and target. And acceptance and flexibility become the goals.

Should I have realized this years ago? I am not a quick learner.

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of roman gods, the year lived & what may come

Janus. The Roman god of beginnings, transitions, and endings. Often depicted as having two faces, one on either side of his head of usually flowing hair. He, giving him that pronoun because in my head I see depictions of Janus with beards on both faces, one looking to the future and the other to the past.  

That is a good enough god for me this morning!

It is my birthday. I “should” sit down and write something. I have been having trouble doing that.  Too many tasks get in the way.  Too many distracting thoughts.  I am monkey-mind personified.  

I need to gently lead that monkey away from the myriad of distractions both within and without, the list of ways that I am not living up to my ideal, plus the list of how I can fix that former list.

And return again to that bust of Janus lodged in my head that I think I saw at the Vatican Museum forty years ago. 

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of all things changing

Happy Birthday, Julia!

We have spent this first half of January clearing out the old, sorting, parting with, bringing in some new, and a good deal of that went on in Julia’s bedroom.

To back up a bit, I have always loved making a big deal about Julia’s bedroom.  Before she came home, I made a pretty girly but not over-stimulating bedroom for her in our Indianapolis home. By the time we moved to Madison 9 months later, she was firmly established as a dinosaur connoisseur and so I designed, painted and decorated a room filled with colorful dinos. She wanted them colorful and wanted her dino toys all around. That was a busy and stimulating room that she really liked. When her taste changed to all things Harry Potter, we made a Gryffindor room—My favorite piece in it was a wand shelf right by her bed. When we moved to Massachusetts, she had almost left HP behind although we hung some of the pictures she was still attached to and we hung some anime posters she was leaning towards. We put up the book shelves she always had and stacked the bins of Littlest Pet Shop critters, Lego and dinosaurs because she wanted them near. Moving house last February, we got to pick out paint colors. Julia picked hers. She decided she didn’t want books in her room (which admittedly was not easy for me) and she was even ambivalent about the anime posters. So, the room, except for the pretty paint on the walls, has looked pretty generic and like she just moved in for the last year. Some stuff on the shelves—toys and art supplies—but lots of piles on the floor with stuff she couldn’t decide about keeping and didn’t know where to put.

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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.

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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.

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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.

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