notice to “friends”

To anyone who voted for trump and imagines they are my friend: Today, I called my pharmacy to see if someone else could pick up Julia’s four monthly perscriptions because I am not allowed to drive yet. During our phone call, the pharmacist said that Julia’s new perscription plan had not yet kicked in and so, the cost would be close to $700 for this month’s medications. I explained why I could not be there to give them her new perscription card and he found a way to access the card and apply it bringing the cost to $20 for the month.

Julia is insured by Medicare and Medicaid. Her perscription plan is also paid by a government program. All of those programs are threatened by the new republican administration.

If trump, musk, kennedy and the congressional majority does what they are planning in the name of government efficiency, my daughter will not have access to the medication that she needs. There are millions of people with disabilities who will face the same circumstance.

And if this happens, it is the fault of republicans, conservative christians and MAGA voters. The lack and loss of medical care to millions of Americans with disabilities will fall on your heads. It is your fault. And you are not my friend.

Hillary was absolutely right. Deplorables!

days 4, 5 & 6

Weekend:  Days 4 and 5 Concerta free.  On Saturday, Julia took a 3 hour nap in the afternoon.  I woke her for supper.  She ate, did some homework, read a bit, watched half of Death of a Salesman on YouTube, watched a bit of Great British Bakeoff and then asked to go to sleep.  She was snoring by 9.  She didn’t have a nap on Sunday but again she was in bed and asleep by 9.  

She is eating.  Like a Hobbit, we say — second breakfast, elevenses, luncheon, afternoon tea, dinner, and supper.  She was ready for them all.  She went through a week’s worth of fruit in 2.5 days and yesterday, she ate the crust on a piece of pizza and said she loved bread.  She never eats crusts and has never loved bread.  Is it hunger, a desire for the physical act of eating and/or taste?

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meds

Today will be Julia’s third day off her large dose of Concerta.  This is the first time in years that I’ve dared a medication vacation.  The reasons are many although as I think of them, more than I am comfortable with involve selfish motives.  Life before meds was pretty difficult.

For the past two days, without concerta, Julia has had a harder time concentrating — going upstairs for something forgotten and actually coming downstairs with the item in hand.  She has sung more, been more affectionate and much more thoughtful — offering to share pieces of a limited amount of candy.  She has also been exhausted at the end of the day and ravenous both at meals and in between.  On Thursday evening, her first day without the concerta, she was able to practice cello.  She was a bit distracted but we worked on long bows for half notes which is quite challenging for her right now.  She did it correctly by herself once or twice.  We also practiced on Friday after supper and she needs more time to understand the long bow of half notes, but again she was very willing to do the tedious part of practice — playing two or four or six notes over and over until the concept is physically understood.

During supper last night, we watched Star Trek and she may have watched with heightened interest and more emotional comprehension.

We went to the school movie night last night which amounts to a big room full of elementary-aged children sitting/lying on gym mats eating popcorn and drinking lemonade.  Not everyone is quiet or polite or still, and parental reigns are somewhat loosened.  Julia did chat with her neighbors — two special girls who genuinely like Julia, and a few others who sat close to them — and was squirmy at times but no more or less than she is on her meds.  She was generally well behaved and listened when I called her attention to distracting behavior.

Her special ed teacher commented in today’s email: Julia very talkative these last two days, in fact on Thursday she kept putting her hands over her mouth as if to try to stop talking or remind herself not to talk. Very bubbly. Very tired in the afternoon, in fact both days I gave up on activity as she could not function – too tired, closing eyes, asking to sleep or making a comment about not being able to do it.

One of her SEA’s (special ed assistant) commented:

02/27  –  There was a lot of talking out during classes and also some growling noises.  Also a high pitched laughing at times. (however the laughter was appropriate for the setting).  Her legs and feet were constantly swinging.  During Cops, she started pulling her hair out of her ponytail and scratching her head.  I gave her a post-it to fold.  She wasn’t defiant at all, just needed more reminders to stay focused.  Just seemed like she couldn’t sit still.

02/28  –   J did very well working on her math test this morning.  She listened and followed the directions.  On her way to gym, she laughingly told  me she wanted to hide in her locker.  I told her that wouldn’t be a good idea.  She laughed and asked me if she could do it later.  I’ve also noticed more direct eye contact in the last two days.  She smiled and laughed more as well.  She participated in a game during gym for the entire period and really seemed to have fun throwing the balls at the target.  When she collected the balls to throw, she shared some with her friends.  Usually, she doesn’t seem to enjoy gym and doesn’t participate for the whole class.  She seems to be more socially aware as well.

I want to share these and further observations with her meds doc.  Part of my reasoning for not even trying to adjust medication in the past has been that I didn’t want her to move backwards and wanted to give her the chance to experience as much learning and companionship as was possible, but it may be time to dare change.  In addition, she has an adolescent body now which is growing, sometimes at an alarming rate, and I am in a much better place to manage and observe who she is and what she is doing.