In any case, blogging has been relegated the back burner. But just briefly, a few updates:
Elizabeth Aquino pointed out (here) that the restraint used at our dental clinic could be a horrible experience for somebody struggling and writhing to break free. Probably worse than just being held down by a family member as Elizabeth does her daughter, Sophie, at their dentist. I suppose C.'s compliance made it perfect for her and patients like her, and colored my assessment of it. For them, it's by far preferable to either general anesthetic or no dental care at all.
Our run of nearly-seizure-free days ended yesterday. It's been 3-4 per day since. There doesn't seem to be any rhyme or reason to these swings.
Nevertheless, C. excelled again at hydrotherapy where I snapped her floating and kicking her legs with flippers, yesterday. (Two photos here to show how she moves her legs.)
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| Legs together, legs apart: C. in her school's hydrotherapy pool |
But I was apoplectic to note that she was the one and only child in the pool - at 10:30am! To remind you: this year, due to financial constraints, the school has reduced the number of hydro session per week per child to ONE! (C. still gets 3 per week, though and here's why).
I came across a beautiful article and video clip: "Silence Wrapped in Eloquent Cocoons: Judith Scott’s Enigmatic Sculptures at the Brooklyn Museum". The late Ms Scott's show, entitled Bound and Unbound, is praised objectively. But her biography is also told sensitively and adds a moving dimension to her art that cannot be ignored when viewing it.
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| Judith Scott (American, 1943‒2005). Untitled, 2004. Fiber and found objects |
Ms. Scott, who died in 2005 at 61, had an interesting history of her own. A twin, she was born with Down syndrome and consigned to a state institution in Ohio at the age of 7. Because she couldn’t communicate verbally, she was classified as “profoundly retarded.” Only in her 30s was it discovered that she couldn’t learn language because she was deaf. In the 1980s, her twin sister, Joyce Scott, became her legal guardian, brought her to live near her in the San Francisco area and enrolled her in an art workshop called Creative Growth Art Center in Oakland.
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| Judith Scott |
Who knows what talent lies buried in the institutionalized citizens of my country who were not even remembered at all in our local news outlets on December 3?
2 comments:
What an astounding story! Thank you so much for posting about it --
I'm really impressed with your daughter's work in the pool. I've always felt a bit guilty that I didn't pursue hydrotherapy with Sophie. I wonder if it's too late -- what do you do for diapers?
Elizabeth, I can't rave about hydrotherapy enough. Kids, like C., who are inactive and unresponsive on land can come to life. And, on the other hand, when she's jittery and tense on land, C. becomes blissfully calm the instant she slides herself into the pool.
Here's a snap from this week that shows it.
https://www.dropbox.com/s/7nd17gpz3is41hc/2014_12_04_C_in_pool.jpg?dl=0
I was also told by a hydrotherapist that some kids learn all sorts of subjects better in water than on land (though C.'s therapists have never tried that).
And C. isn't an exception. I've seen other profoundly affected kids at her school who became skilled swimmers.
We use Huggies Little Swimmers which somehow don't become heavy from urine. I have no idea how that's accomplished but the difference between them and regular diapers is drastic.
Make sure you buy the original "Large" size. For some reason, the stores in my parts now stock a new size "Medium-Large" that's a lot smaller than the old one. Just one or two stores here still sell the large "Large"; once they run out I'll have to order on-line. (It's still a bit of a squeeze for C. but at just under 30 kg., she still scrapes by.)
Also, be sure to get the ones that have velcro sides. The older version minus that could only be slipped on like underpants and often ripped in the process.
Here's a photo of the package I'm referring to: http://truecouponing.com/wp-content/uploads/2013/09/Huggies-Little-Swimmers.jpg
Naturally nobody at C.'s school told me about these. I only learned about them by accident. For years before that C. was weighed down by her diapers while struggling to stay afloat.
I can't imagine there's an age limit for starting this therapy. But I'm so surprised that Sophie was never given hydro at school. Was she given any other therapies there?
Have you started the physical therapy you blogged about recently? I hope you manage to get her into hydro and are as impressed as we've been.
And I'm so glad you liked that NY Times article about the artist with Downs. It blew me away.
Your comment arrived while I was in the middle of writing one to you. It refers to your post dated Monday, December 8, 2014 "Dispatch from the Revolution: Cannabis Oil Update". I'll just paste it here:
This detailed account of Sophie's improvement since starting cannabis was an eye-opener for me. I had no idea how serious her seizure condition was previously. C. hasn't been that bad for the past fifteen years or so. Her improvement with cannabis, while definitely noticeable, isn't nearly as dramatic. And we are still awaiting more significant functional progress. But please don't ever forget how far your cannabis information has reached. Here we were, totally ignorant of its use as an epilepsy treatment, until your blog enlightened us. I'm forever grateful to you.
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