Monday, June 20, 2011

Little Bit 'A Random

Hello?  Hello?  Anyone still checking in here?  :-)  Just some random stuff:

1. Last Monday, we went to the zoo and met up with my long-time friend Paula and her kids.  We've been friends for, hmmm, 33 years now?  We met in kindergarten, we have the same birthday, we are very much alike in many things.  I will admit I chose a not-so-great day to do the zoo thing; on Mondays it is "residents of C. county get in free with identification" day, and WOW was it crowded.  I have never seen the zoo that busy.  Of course it would have been just as fun doing some people-watching as it was trying to get a glimpse of the animals.

2. Thursday S and I went and participated in a Prader-Willi Syndrome-related research study, being conducted by a team in Cleveland.  She did great!  I was really proud of her ability to go with the flow all day, do lots of 'playing' with the research assistants (which meant they probably asked her a zillion questions), and not get crabby about anything.  It was pretty interesting.  I answered a lot of questions too, pretty exhausting but well worth it if it helps the medical world understand PWS better.  Part of the study involves some kind of questionnaire used to determine the presence of autism, and I can definitely say, S is not autistic even though PWS is an autistic-like syndrome and a good number of children with PWS have an additional diagnosis of autism.  At the end of the day she and I tried, without success, to make it to the parking garage before a big storm hit; we ended up in the university bookstore, where a kind employee gave us two large trash bags to cover up with so we could at least get to the garage without getting soaked!  Then we drove through HUGE puddles, and past an impressively-overflowing stream, as we got on the road home.  Looong day, but S was a real trooper.  I think she had a great time, actually.

3.  It was either Wednesday or Friday last week, when one of the neighbor girls came over and asked S if she wanted to play. !!!  This is a new experience for me/her; this little girl has lived in the house across the street since last September I think but this was the first time they'd played.  They are pretty much the same age, but S will be in second grade in the fall and O will be in third.  But they played really well together.  I was really nervous about it.  I shouldn't be.  Sophie did fine, and O seems like a really nice girl.  The whole subject of how S will make friends, and how other kids will relate to her, is a whole post by itself!

4.  This weekend was K's all-school dance recital.  We are talking a 4-hour rehearsal Saturday morning, 4 hours at the performance location Saturday night, and another 4 hours on Sunday.  This is I think her third or fourth one of these, plus other performances, so we are used to the routine by now...but it is still exhausting.  She does so well onstage, though!  She has never gotten nervous about any performance.  She doesn't even seem to get butterflies.  And really, I have sat through enough of these now to know that as the girls get older, the quality of these performances gets better and better.  K has been attending this school for 8 years now, and the teachers do an excellent job of getting the students to dance well.  So it is a long weekend but it is fun.  I'm proud of K for sticking with this; it has been a challenge for her as the school is not in our neighborhood, so she only sees these girls twice a week, whereas some of them go to the same school.  She has made some friends recently, though, so I'm thinking she may continue on with this until she graduates high school, unless she gets involved in sports or some other activity which would conflict.

5.  I will have to do a separate post about Father's Day.  I'm a shmuck as I did not get any presents ready, from myself or the girls, for B for Father's Day.  So dealing with huge guilt about that.  And Father's Day has always been just an odd day for me anyway, as my relationship with my own father...well....there really isn't one.  Anyway.

6.  S starts camp tomorrow.  I am hoping like crazy that I can get her up and ready, get myself ready, get her stuff ready (lunch, snack, bathing suit, towel), and out the door by 7:30 a.m. to get to camp by 8 a.m..  I've already warned her teacher that, until I figure out what the traffic will be like, we might be a few minutes late.  I've been sort of dreading having to get out the door so early; but, on the other hand, I'm kind of looking forward to it as I'm hoping it will help me get more stuff accomplished in a day.  I'm going to try really, really hard NOT to come home and sleep...I just have so stinkin' much on my to-do list, plus I have a conference call at 11.  I will have to drink a bit of coffee I guess.  I'll probably end up going to be at 10 p.m. tomorrow night.

Well, not a very interesting post, but oh well!  Thanks for reading-

Saturday, June 11, 2011

Prader-Willi Syndrome and Inflatables

I am consistently amazed at the things that come up, about which I never would have thought twice if I did not have a child with special needs.  The learning curve, as we weave PWS into our lives, has been one of mountainous proportions...or I could say, it is a curve as high and bouncy as the inflatable S tried to scale the other day.

The PTA for my daughters' school has, for the past few years, paid to have four huge inflatable 'things' brought into the cafetorium.  Throughout the day, each grade level has a chance to go wild and crazy on these things.  The picture below is from Google Images, but there was one of those at the school that day.
Now, the PTA at the school is great.  They really do quite a bit for the kids, and provide a great deal of help to all the teachers there.  So I don't have a problem with this activity being provided for the school at large, even though there are special-needs-kids in the school population who could not possibly play on these things, for various reasons.  When S brought the flyer home announcing this "Fun Day", I know I groaned inwardly and may have done so audibly as well....I just wasn't sure how S would do on these things.  Plus, even though there are only two grade levels going through at a time, we're still talking about 200 kids cycling through 4 inflatables over about an hour's time.  The noise level is incredible...there are kids moving, running, bouncing, flinging everywhere.  They all definitely have fun, but for a child with low muscle tone and poor overall muscle strength, how would this work?

So, I went up to the school Tuesday afternoon, to supervise/help her with this.  She was excited!  She has been on inflatables before so she is familiar with the sort-of-out-of-control environment that happens to groups of kids when these things are around.  So, first she lined up for this rock-wall-climbing thing; squares on the incline to put your foot on, with ropes to pull yourself up.  I told her she could try it but if she found she couldn't make it up and over, to just stop and slide down.  She did a great job trying, and made it about halfway up - but the combination of trying to balance on the footholds AND pull herself up with the rope was too much.  So that one will have to wait 'til she's older and stronger.

Then, she lined up to try this obstacle course thing...have you ever watched that show "Wipe.Out"?  This inflatable reminds me of what contestants go through on that show, on a much smaller scale of course!  
It looked pretty much like the photo above, although the one at the school had a net roof on it.  The beginning is at the left side of the picture.  As soon as you get kids moving through it, the whole thing is moving and bopping and you really have to keep your balance.  And of course, you have to be able to move fast, or you are going to get squashed by kids starting after you but landing on top of you as you both exit at the same time.  Sophie did not enjoy this one either; I give her a lot of credit for wanting to try it, but this is another one that will wait until she's a bit older and stronger!

So I told S that, for that day, she would stick the two inflatable she could go on and enjoy without hurting herself!  These were two slides which looked like the top photo, one a little higher than the other.  The other students had wait a few seconds longer for her to climb up, and then get situated to slide down, and then "dismount" at the bottom - but it went okay.  S enjoyed herself and, oddly enough, did NOT tire herself out as much as I thought she would.  I will probably have to go up to the school every time the PTA plans this activity, though - or make it mandatory that an aide stay with her the entire time, I guess.  I mean, she can definitely participate on at least some of these - but if she had not been supervised I'm pretty sure she would have gotten hurt.

Another instance of life with PWS - walking that fine line between wanting to have my child participate as much as she's able, yet also wanting her to be safe and/or wanting the rest of the world to just slow down so that she can participate.

Thanks for reading-

Friday, June 10, 2011

Books in the Pile!

What I'm Reading These Days:

Well, I guess I should really call it, "what I'm listening to these days", as this particular book was one I did as a book-on-CD.  And I have to admit, this particular book really took me a while to finish, although it is a very good, very well-written story.  I may not even be much of a world-traveler, so I enjoy reading literary fiction which is so well-written that the reader feels like they've actually been to the location of the story.  Bangkok Haunts by John Burdett is just such a book. 

The story is set in Bangkok obviously, and the main character is Sonchai Jitpleecheep, a Royal Thai Police homicide detective.  This is Burdett's third book featuring Jitpleecheep, and in this story, his former lover Damrong is killed.  Damrong was an extremely skilled prostitute, and Sonchai learns of her death because a video of it - bluntly, a snuff film - is sent to him. 

I have to admit something here: while I am no prude, the level of, shall we say, "physicality" in this novel was a bit uncomfortable.  Not only is Sonchai the son of the owner of a gentlemen's club (where he still sometimes moonlights), but Burdett spares very few details as Sonchai investigates Damrong's death within the environment of Bangkok's prolific sex trades.  Since I was listening to the book instead of reading it, it wasn't as if I could skip through parts of it, willy-nilly - because if I did, I would have missed some of the details that are important to the story.  My "squeamish-ness" notwithstanding, Burdett's writing takes the reader directly into the Thai environment and lifestyles - the incredible heat, the Buddhist mysticism, the levels of humanity within that country, the workings of a society the economy of which seems to be based largely on prostitution.  There are even former Khmer Rouge soldiers put to work as security guards/hired killers. 

As I continued listening to the story, I realized that the highly sexual nature of this story was not a simply gratuitous tool on Burdett's part.  The entire book is, actually, somewhat of a study on the nature of human relationships on the physical level - and from a Buddhist perspective, on the spiritual level as well.  There is Sonchai, married with a pregnant wife, investigating the murder of his former lover - a prostitute who makes a living by selling her physical self.  Ultimately she is killed - but she has a spiritual agenda there, all the same.  She haunts Sonchai's physical side - while mentally, intellectually, and spiritually he resists her as much as possible so as not to bring bad luck to his unborn child.  There is Kimberly, Sonchai's FBI-agent friend, who falls in love with Sonchai's assistant - a young man inhabited by a female spirit and thus, on the verge of a sex-change operation.  Then there is of course the general topic of prostitution running throughout the novel - is it right? wrong? why do various countries allow such a large part of their economic structure depend on the practice of prostitution?  Why do men have such a need for sexual fulfillment that they would contribute to a practice which demeans women and keeps them in a level of poverty?  Is Kimberly right for not wanting Leg to go ahead with the sex-change operation - or is she wrong for bringing Western beliefs into a situation she can never really understand?  Did Sonchai really "love" Damrong - or was he addicted to what she could do for him physically? 

So, overall, I would recommend this book, as long as you are able to read it for the vivid characters and the equally vivid sense of Thailand it provides.  I'd also recommend reading it instead of listening to it; some of the passages can be skipped but that is easier to figure out if you can skim the words!

Thanks for reading-

Wednesday, June 8, 2011

What televisions eat for breakfast

and lunch, and dinner, and snacks: your brain cells!

I mean no disrespect to anyone out there reading this, who has favorite television shows or whatever. In fact, I published this post yesterday, and then took it down late yesterday, because in re-reading it I thought I sounded judgemental.  That is not, at all, my intent with this post.  But this topic is one about which I am passionate. 

I've been trying to pin down the source of my overall dislike of television, over the past day; I think it stems, honestly, from my own mother's total and complete irritation with the way my father would watch hour after hour of television while she took care of the house, took care of all 10 kids, and wore herself almost to nothing while my father sat and watched t.v. every night.  Granted, my parents are from a completely different generation, where the wife/mother took care of the house and children and all responsibilities arising therefrom, and the husband/father was the breadwinner - and having worked during the day, was of course allowed to eat dinner/sit in front of the t.v./go to bed/get up the next morning and repeat.  So this is the pattern they followed...even though one look at my mother in those days, by anyone even slightly observant, would have seen a woman on the verge of mental, physical, and emotional collapse.  And yet, the t.v. stayed on, every evening. 

When I was about 8 or 9, there was one year where our television broke and my parents did not have the money to immediately get a new one. So, we went without a t.v. for about a year. My older siblings probably don't remember that because they weren't living at home anymore at that point. Now, I will say that, at that time, there wasn't nearly as much ON t.v. to watch. This was before the days of cable, so really, people in general weren't watching as much television to start with (besides my father...he has always watched a lot of t.v.. Not sure how he got through that year.) So I don't think it was merely this t.v.-free time from my childhood that has caused me to be so generally anti-t.v. - and there are shows which I remember watching on a regular basis...anyone remember "M.A.S.H.", "The Love Boat", "Fantasy Island", "Inspector Gadget"?

I do realize that televisions which are now omnipresent in our society have their valid uses.  Humans do need to be entertained, for no other reason than that the human mind enjoys a good laugh, and at times needs a break from the stresses - seemingly neverending and sometimes extreme - that is life these days.  I do turn on our television daily - to check the weather, to sometimes watch NASA coverage of what's happening on the International Space Station, and to watch about 20 minutes of the news (CNN/HLN/Fox News/CNBC.  Local stations just don't cut it.).  I will often watch an episode of "Say Yes to the Dress" with Elder Daughter, as it is nice have something to watch with her which we both enjoy (I tried to watch "Adventure Time" with her on the Cartoon Network...too, too weird.).  So I'm not 100% anti-television, I guess.

I think the behavior that really bothers me, the behavior pattern I really object to, is when the television is just turned on, every night, from the moment dinner is over until the last person goes to bed.  Or even worse, when the thing is just on, all day.  I have seen people spend several hours, flipping repeatedly through multiple channels, not purposefully watching any one show and then turning the dam* thing off... they're just...sitting there, remote in hand, totally sucked into whatever is happening on the screen.  And this happens every. night. of. the. week.  And during these hours of being sucked in, it is my thought that that person is totally subject to, and negatively influenced by, the beliefs/opinions/influences/thought patterns of whoever/whatever is flashing across that screen.  For HOURS, every day.  Not watching anything to actually learn from, just watching....whatever. "Watching" other people do stuff, or being captive to what other people tell you is interesting, thought-provoking, or important. I will admit, there have been times I have wanted to "veg out" and watch some mindless television, just to get my brain to switch off for a while. But I can turn the thing on, and flip through channels as much as I want to....inevitably I quickly get to the moment where I'm asking myself, "WHY am I watching this?"

I am almost 39 years old.  Thinking back through the years to when I became old enough to notice such things, I can honestly say that I have NEVER had anyone tell me that their life was changed for the better, or that they have contributed to society or made someone else's life better, by watching the television.  Television-watching does not help humans think for themselves; it makes people feel like they have opinions on something simply because they've watched some talking head expound on something, or they've watched a show with a plot which sort-of dealt with a certain topic.  Television-watching can, certainly, tell me a few things about another country...but through the filter of someone else's judgement of what details are important, and which details don't need to be mentioned because they aren't going to bring in viewers. 

Everything that comes out of that television has been tweaked, tinkered with, subjected to someone else's thought processes.  Television execs put cr*p on television because they are trying to sell ads, and are playing to the lowest common denominator in the pool of society - because they know that humans will take the easy road and just watch whatever, rather than really think about the time they are wasting or the questionable nature of what they are seeing.  Consider how much time is wasted by thousands of people, watching "The Bachelor.ette" every week.  I used to waste my time that way too, I'll admit.  But, it's a dumb show.  It really is.  There are other options as far as relaxing/de-stressing. You could still be entertained, and yet make better use of your brain cells, by reading some silly romance novel from the library.  You could still de-stress your brain and help your system relax a bit, by taking a slow stroll around the block. 
And even the phrase I just used above - just to get my brain to switch off for a while - doesn't that speak volumes about what television does to the human brain? How many people out there come home every day, and end up sitting for hours in front of that box, with their brains switched off and their evenings controlled by the remote?  I just think hours of television on a daily basis, watching the world go by, not allowing one's brain to create original thoughts, letting the entertainment and media industries so greatly influence one's thoughts and decisions and world views....that's a dangerously mind-numbing thing.

Thanks for reading-

Thursday, June 2, 2011

Summer Resolutions!

Oh, I know, resolutions are things that are usually made just before a new year starts. 

But, for the past few years towards the finals days of my kids' school year, I have found the resolution habit bubbling away in my brain.  What are some of my summer resolutions, you ask?

1. Take the kids to the pool, a LOT!
2. Take the kids the beach, a LOT!
3. Go to the zoo, repeatedly - get our money's worth out of that zoo membership!
4. Picnics in the park!
5. Lots of awesome craft projects!
6. This summer, teach my older daughter how to cook while younger daughter is at camp!
7. Clean the whole house, top to bottom, to get as much stuff ready as possible for this next item:
8. Have a garage sale!
9. Clean the office, organize all our bill stuff, organize all my/our PWS-related stuff!
10. Eye appointment for Elder Daughter
11. Get up at 6:45 Tuesday - Friday for six weeks of the summer, to get kids/myself in the car, to get Younger Daughter to camp by 8:10 - through rush-hour traffic (note to all those who work in downtown Cleveland: if you could take the summer off, so that you're NOT all on the highway at that time of day, that would be awesome.  Just tell your boss I gave you permission. Thanks much!)
12.  Somehow find things to do w/Elder Daughter so that she doesn't spend the entire summer on the computer!

I can do all that, right?  Sure thing!


Thanks for reading,