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. 

That was only yesterday but since he came home from the vet, he has not eaten.  The Vet wanted to try a prescription food which I gave to him last night.  He was not interested at all.  This morning I reverted back to the canned food I have and that he usually likes.  He has not touched it all day.  I’ve seen him drink some, but he has been very quiet today and has spent most of the day laying very pulled in on the bathroom rug.  I equate laying in the bathroom with his limbs beneath him with his feeling unwell.  

The vet gave me no idea of how long we will have him for.  Day by day and we will keep him comfortable is all she would say.  

Next, Julia. Julia has been in her second day program, Bay Cove, since January.  Bay Cove has more youngish clients and Julia likes some of the activities, but once again, Julia is expected to be motivated enough to choose what she wants to do.  She has a goal to do volunteer work a few time a week and the program has a few regular volunteer activities — shopping for elders and doing some work in a community garden — but they emphasize that staff will suggest but will never “force” he to do anything.  I have suggested that there is something between having her find or choose her activities and forcing her to do things. I have wondered what “baby steps” there are to convince her to engage in the programming, but when I’ve written to the program director, I am told that that their goal is independence for all of their clients and fostering independence means initiating activities and being motivated to find her own volunteer opportunities. I was also told that this program has worked for many clients over many years, suggesting what?  That they will not bend for someone who is not succeeding in their program. That it is Julia, not their staff who is at fault. That I should not question their method of fostering independence.

Their program as it is administered doesn’t work for Julia because her first impulse when asked to do anything is “no!” Teachers, therapists and I have spent plenty of time convincing Julia to do things. We have urged and convinced. If she trusts those who are convincing, she will eventually try new activities, but I have put in a lot of time up front building trust as have her teachers and therapists. The staff at her present program hasn’t put in the time and has not built relationships with her. Even since January, two staff members who Julia liked have left. Teachers and aides build relationship, but it maybe day program staff aren’t  expected to do that especially if staff is always changing. 

Last week, Julia said to me “I don’t have to like being at Bay Cove, I just have to be there.” This doesn’t sound like her at all and I suspect it is something she has been told at Bay Cove. I’m sure it has something to do with Julia’s behavior, but it seems like an awful things to say to someone.  Julia is not sweet, quiet and compliant.  She is feisty and loud. She can be charming and funny and insightful, but people dealing with her need patience and have to cut her a lot of slack. I am beginning to believe that the staff at Bay Cove just don’t like her very much.

For the last two weeks, Julia has been in arts day camps. The first was for movement/dance and last week’s was a music camp where she played cello and ukulele. I have been nervous about whether Julia would participate, especially at the music camp where there was a set schedule of ensembles, drumming, singing, cello trio and private lessons. Well, she did great! She did hang back and to herself at first in the movement camp, but she did participate by the end of the week. And she did not refuse to do anything, her transitions were slow (as they usually are) but she did not miss anything. And she had a good time, especially playing music all day.

I know that a day program is not about playing music all day but I think the pre-determined schedule is something that might work for Julia.  As I think about it, it is more like a school day where she was comfortable . And so this is what I will bring to the program director at Bay Cove.  Perhaps they might be willing to bend their “proven programming” for someone who is floundering in a  system that has worked for so many others.

Today, I toured another program, The Price Center, which is in Newton.  It has been praised often and I have tried for the last two years to get a tour there.  They have a bright and cheery building and lots of space.  There is a CBDS (Community Based Day Services) Program where clients spend a good deal of time out in the community and a subsection of that program that becomes more focused on job skills and eventually in finding long term employment.  

In addition, there is a program called Specialized Supports which serves individuals who need assistance with communication, behavior, and social skills. This program has an autism focus and staffing ratios typically are one staff to three participants so clients can benefit from personalized attention. The goal of Specialized Supports is for clients to join the CBDS eventually (if it is possible) and move on to the employment arm of the program.  Perhaps this is a place that would be appropriate for Julia. 

The Price Center has been closed to new clients since 2020. Because of their reputation, I’ve been in touch with one or another director there monthly since 2021. I’d love to see if Julia might fit in there. Perhaps now? Perhaps before the end of the year?

This is Julia third week away from Bay Cove. She is enjoying her arts camps and she is telling me that she doesn’t want to go back to Bay Cove. I ask her for some reason and she cannot give one to me.  The most she can say is that they stress her out, but would another place however well reviewed be any better. If she could give me some particulars, I’d have something to go on, something to bring up talking to staff, something to ask to change.

As time goes on, I admit that I am less sure that I will ever find somewhere Julia can thrive in, somewhere where she can learn to be as independent as she possibly can, somewhere where people will be interested in knowing her and helping her. For me, this is quite the feeling of failure and defeat but none of this is about me. I want to find a path to Julia’s best life for her alone. I would so love to see her happy in her days.

Julia rowing in a double with her coach, Lucy, in the chase boat.