Tag: day programs

healing

Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

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Posted on by Suzanne Buchko 4

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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Posted on by Suzanne Buchko 0

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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Posted on by Suzanne Buchko 2

siloing

To The blogger of The Great Leap who wrote about her new business—The Autism College Connection—which offers advice to families who hope their children with autism are college bound:

I am a big fan of your blog and applaud your work with your son and your new business. I’m sure many will benefit. I take issue, however, with the way you described day programs. You wrote, “He was too smart for day programs that babysat young adults with higher needs.” My daughter is also smart. She is quirky and has many talents that need cultivation. She has travelled the world with me and wants all those things typical young adults want. She also needs a day program that offers her instruction, community and some fun. The staff at her day program engages with her, fosters relationships and expands the worlds for their clients. To reduce what day programs do to “babysitting” hurt to read. I expected that you understood more about the complex post-pandemic world of young adults with autism and other disabilities. It was both disrespectful to my daughter and others who need day programming, and it further silos the larger community of people with disabilities. I believe we need to stand together, cheer on each other, support the needs of all of our children and young adult, not just those in our own children’s niche. If we don’t support and respect each other, how can we expect the typical world to ever understand, accept and support our children?

To her credit, the author responded to my comment almost immediately apologizing for her clueless sentence.  

And I am proud of myself for commenting. I think that even last year, I would have said nothing, feeling confused about the disrespect and the easy categorizing of people with different levels of disability. Feeling uneasy with the thought, “what if Julia read that?” 

This morning, I feel slightly clearer. Amazing how much we all have to learn.

Posted on by Suzanne Buchko 1

waiting & not waiting

Waiting.  Big snow storm predicted for the day. Over the past two days, the outlook changed from hour to hour.  I think it was supposed to begin overnight and that got edged up and up until I decided that we could do Julia’s volunteer time at the library.  It is raining and it is chilly, but not cold enough for serious snow.  A few flakes were falling during our ride to the library but if I wasn’t expecting snow, I might not have identified what fell as snow flakes.

And things were cancelled yesterday—many school districts, Julia’s day program, CRI rowing tonight.

Even my phone said it was snowing this morning long before there was anything but rain coming down.  

And waiting to see if my persistent cough is a flu.  I’ve been coughing—sometimes more, sometimes less—for months now.  Covid recovery, dry buildings, maybe a cold.  Just on and on.  However, today I woke up with more—heavy eyes, feeling like it was a bad night’s sleep even though it really wasn’t, maybe a bit warm, and now sitting in the library, my skin is beginning to hurt and all I want to do it go to bed.

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Posted on by Suzanne Buchko 0

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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Posted on by Suzanne Buchko 2

tasting failure

Very rough day. Somewhere around 10 a.m., I received this email from a program director:

“It was great to see you and meet[] Julia this week. Our team felt that what we provide and the environment could be over stimulating for Julia. We think a smaller size structure program will be a good fit for her. I did reached out to Nancy from DDS with feedback. I am sure you will be able to find a program for Julia.”

That last sentence — “sure you will be able to find a program” — really stung.

Julia and I visited the program, Delta Projects, on Tuesday. Julia’s behavior was not perfect but by the time that we left, she was in conversation with some of the staff and a few of the participants. I was hoping that Delta Projects was a possibility for her. The director’s email quashed that hope.

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Posted on by Suzanne Buchko 3

slivers of light

After a lot of dark days, a few lights appear.

First, some sobering reality.  The day program visit of two weeks ago that did not go particularly well, resulted in a rejection due to impulsive behavior and Julia’s use of an hour of the behavioral specialist’s time.  The rejection did not surprise me but it did scare me and I went into full catastrophizing mode.  What if this is every interview, every day spent visiting a new programs? 

The woman from a third program who visited Julia at Elliot House a few days before the unsuccessful visit to the second program was slightly more encouraging.  She could see why Elliot House was not right for Julia, pointing out that she did not see any sign of relationship building going on, something that Julia thrived on in the past.  For Julia, that is right on, (for a more independent and self-motivated person, Elliot House would be a very different experience). She told me that comparing Julia at Elliot House with how Julia might be at her program was an apples-to-oranges comparison, impossible for her to make. The woman offered a tour of her program for Julia and I and possibly a day visit to the program for Julia a few days after the tour.  I asked to do both when Julia finished her month at the arts camp she is attending hoping that some of the luster of the full internet days at Elliot House will be worn off.  Fingers and toes crossed.

It has occurred to me that for all the lip service by professionals acknowledging the regression and set backs that have happened since the covid shut downs and lack of programming, allowance for the behaviors stemming from those regressions is lacking.  Running through my brain is the idea that Julia from 2019 would have been more able to visit programs.  Anyway, I think that is so.  My hope is that I get a return of Julia’s 2019 sense of herself, but I can’t make that happen alone.  I need a program that will support her and foster the re-growth.  At the same time, that special program has to be willing to live through Julia’s transition to the program.  So far, I am not coming up with a program willing to do that.

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Posted on by Suzanne Buchko 2

small things

Today is a day of doing small things for any number of reasons.  Julia’s continuing bad mood limits activity.  There is a building up of small tasks that have accumulated and feels like a much larger burden.  I am expecting dinner guests, my neighbor from upstairs, tonight and I have light duty as to the cooking.  And so, small things—gym this morning which was good for exercise and whose aim was to mitigate the foul mood that a Julia woke up with.  It didn’t work.  Cleaning up and pruning the window boxes on the back porch and washing the porch with the hose. Making cookies to go with a fruit dessert that I usually just make during the holidays for tonight.  Hanging pictures in the hall that have been on the floor for two weeks. Writing a few email, begging for help with Julia’s services.  And now, sitting down to write just a little bit.

I have had trouble sitting down to write.  Not finding the time when I am at my best and wanting only to veg out when I am tired or feeling overwhelmed.  And that is most days.

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Posted on by Suzanne Buchko 0