Maybe I would have joined the circus....

This blog post--

http://chroniclesoffibro.blogspot.com/2012/04/if-i-knew-then.html

--started me thinking.



I don't want to whine, but....(notice the ellipses?) I started wondering what my life would have been like if I'd gotten the right education.  What if I'd had piano lessons as a young child like Evgeny Kissin?  It would be pretty vain to think that I could have been another Mr. Kissin, but perhaps I could have at least had a career in music.

Maybe I could have studied proofreading.  Right now I could be working from home even though I'm sick (I mean in general--I haven't suddenly taken a turn for the worse or anything).  I was really good at mathematics.  Maybe I could have gotten some accommodations and started some kind of a career in something.

If only people had even partly focused on my strengths instead of only paying attention to my weaknesses.



And then, what if we'd known forty years ago what we know now about autism? 

I could have been given special education to try to fit in with the crowd.  Maybe I would have even reached eighteen years of age with some of my self-esteem intact.

I might have been put on social security at eighteen.  High school dropout, no driver's license, no job, no friends--the government might have believed it if they'd seen my school records.  And maybe I'd have been on Medicaid and I would have been able to get the treatment for CVID.  Maybe I'd have been one of the lucky ones who responds to treatment by being healthy enough to have a life.

And what about all of the personal relationships that might have survived if people knew what was the matter with me?  What if I'd been employed at something--that would have changed many people's opinion for the better (including mine at times).  Not to mention the effect just having a name for what was the matter with me would have had on me.



I wonder what my life would have been like if I'd been born forty years later.



I guess most of us don't wonder things like....gee, I wonder what it would have been like if I'd been born in Afghanistan and married to some old geezer when I was twelve, or, gee, I wonder what it would have been like to have been born into some dirt-poor family in North Korea.  Nobody ever asks, why, God, why me, why do I have a roof over my head and a piano sitting in my dining room? :)  Or, why am I able to walk to the kitchen and the bathroom all by myself?)

Maybe I should be wondering what my life would have been like if I'd been born forty years earlier.  I might never have known what was the matter with me.  Without the internet, I wouldn't even have been able to get my meds from overseas.  No blog, and the piano would have been a lot harder to learn without the 'net.  Although nobody would have expected me to work outside the home if I'd been eighteen in 1943.

And I suppose that's enough Sunday-evening-cloudy-weather musing.  It's about time I got up and got moving.

It's Called www.typobounty.com!

Good morning!  The kids and I are watching a long, two-part movie--'Aftershock:  Earthquake in New York".  It was the best thing on tv this morning, which isn't really saying very much.  The best thing it  has going for it is the three original Stargate series actors (recurring characters, but not main characters) that have shown up.  My 12yo daughter was making waffles when I stumbled out of bed this morning.  She loves to cook--every mother's dream come true.  My husband is in the National Guard this weekend, so it's girls' weekend here.  I always try to make sure all the housework is done before the weekend starts so we don't have to do much.  It's cold and dark and rainy here--we even had a bit of sleet hitting the east window this morning.

The good news is that the work-at-home proofreading business is actually legitimate.  I have the six dollars in my bank account to prove it, from finding three proofreading errors.  I waited until the businesses on whose web pages I found errors sent the money to PayPal, and then I had to link PayPal to my bank account, so it took a little while for the money to arrive.  Now that I know it's for real, I'll spend more time doing it.  I don't know if I'm going to make much money, but every little bit helps, and who knows, maybe it will lead to another proofreading job online.

If you're interested:

Check this out. http://www.typobounty.com/general.php?page=hunter
Sign up for an account using my team number: 2130.



After the movie it's ten minutes of housework for everybody, and then I'll be calling my mother.  We talk every day.  She has rheumatoid arthritis (RA), and is mostly confined to a chair.  People with CVID are statistically more likely to have relatives with RA, which is another immune disease.  I was about twelve when RA reared its very ugly head.  My sister was about seven.

It wasn't just that CVID took my health.  It's relative took my mother's health.  A few years after the twins were born, she wasn't able to come out to help anymore, or to visit.  Even before that, at times she was unable to help.  I remember going to the laundromat with breastfeeding twin babies on heart monitors, a two-year-old, and a five-year-old.  Going grocery shopping all by myself with the four of them.  Not having a babysitter.

First we stopped going anywhere when I was a teenager.  Then she got a bit better, and she was able to go out with the girls and I.  Then she got worse again.  Now she's in a wheelchair.

We've been talking by phone every day for the last twenty years, ever since I moved out.  We have a lot in common--there are things we both wanted to do that we never got the chance to.  I'm lucky--at least I have good days when I can walk around and do things.  My daughters are lucky too, although they'd be luckier if I weren't sick at all (not to mention all the neurological problems I have).



And now it's time for that ten minutes of housework.  Most days it doesn't occur to me (or most other people, I suspect) to be grateful to be able to do housework.

. . . . Ellipsis . . . .

I'd thought about not writing today, but then I looked at the stats on this blog and decided I didn't want to let my loyal readers down. I love you guys. All four or five of you. Don't worry, I don't know who you are. But I feel sorry for you because you really should get out more.



The kinds of things you learn when you're homeschooling.  My 15yo daughter comes up to me with an open textbook and asks for help with ellipsises (ellipsi?).  I have to ask which subject she's on.  Turns out it's english.  Ellipses (I looked it up) are those series of periods you use when you're leaving something out while quoting someone, or when a speaker pauses.

I'm always learning something.

I don't know how I'd teach algebra if I hadn't had lots of math in college.  My daughter would need help from someone else when she had questions.  Sometimes I get to model how you look things up when you don't know--a valuable life skill in the twenty-first century.  I seriously love search engines.



Yesterday I had a momentary lapse--I couldn't figure out where to put my fingers on the piano keyboard.  Happens once in a while.  When I lamented that I'd forgotten how to play, one of the twins started cheering.

Nobody around here wants to hear me drone on about music, but you four are apparently desperate for amusement.  So you should know that I'm going to be finished writing the second mazurka soon.  One day I'll have to inflict it on all of you.

Yesterday I played all four of Schubert's op. 142 impromptus.  I've been working on the last one for about half a year now.  When I started working on no. 4, I had trouble playing the first three, but it's a lot easier now.  It's great to see the progress.

Some people think these four impromptus were originally meant to be combined into a sonata, and having played them, I can see why--they do remind me strongly of his sonatas.

And now I'll stop droning....I don't want to push my luck too far.

Later!

Mommy, I'm Bored!

Well, the answer to the question 'what happens when you can't think of a catchy blog post title so you use popular search engine terms' is........nothing!  Oh, well.



I've been watching & listening to music online these last couple of days.  Here's the mazurka I've just started working on, played by somebody who knows how....Evgeny Kissin.  When he was just fifteen.  (Mr. Kissin started humming along with his sister's piano lesson (Bach) when he was eleven months old.)

http://www.youtube.com/watch?v=FZ87vgtUV_U

If I were a professional pianist, seeing this would make me want to throw myself under a bus. lol



Not much happening here.  It hasn't rained much, so there hasn't been much yard work.  I've been going through some disorganized boxes of stuff upstairs.  It's that time of the year when you've been homeschooling for months and months and you start thinking that it will be nice when the year is over.  Housework and homeschooling and exercising.  Sleep and repeat. I've hardly left the house this spring except to go grocery shopping.  If if weren't for the piano and the internet, I would be seriously bored.  But I've been engrossed in composing my second mazurka these last couple of days to the point of almost letting everything slide around here.

The secret to not losing your mind when you're cooped up a lot is to keep busy.  It's a lot worse when I'm sick--being stuck at home is not anywhere near as bad as being stuck in a chair.  At least I've been healthy lately.  And the weather's nice today--I'm starting a collection of different kinds of wild flowers in baby food jars in all the window sills.  There's supposed to be a hard freeze tonight.

My 12yo daughter is making bratwursts and hot dogs for dinner tonight, and we have pumpkin pie from yesterday for dessert.  Food banks love to give you canned pumpkin pie filling.  It's good stuff, though.



And I'm off to (you guessed it) play the piano some more....Bye!

Facebook YouTube Gisele Bundchen

I'm curious--what happens if you put the top three search engine terms of the week in your blog post title?  I'll let you know.



Another chapter in the 'what-it's-like-to-be-disabled' book--the last one was "What It's Like to Ask the Government for Money".  This one is "What It's Like to Ask Your Family for Money".

I am soooo lucky I have a nice family.

My husband is working part-time and I'm not working at all.  I've been looking and looking for work I can do online for...let's see now...off and on for my entire adult life.  But this time I might have actually found something.  One of my future blog posts might actually be an endorsement.  Or a condemnation.  We'll just have to wait and see.  But not to worry, I didn't give anybody my debit card number or anything.

So....the bills have started to pile up, and then the phone company called.  And then suddenly our phone service was shut off.  So I had to pay the bill first, with the mortgage money.  Then I had to call my mother and ask for money to pay the mortgage.

What's worrisome is that this is just the beginning.  I can only hope more money starts to come in soon.



Meanwhile, one of my children (aren't they all too old for this now?) has Not. Wanted. To. Do. Her. Schoolwork. Lately.  This is a whole other chapter in some other book.  Sometimes it comes and goes.  The attitude.  But let me tell you, it's not pretty when a pre-teen decides to go upstairs and do a fair imitation of an air raid siren for a quarter of an hour, during which I was quite grateful to have an upstairs.



And, after beating my imaginary head against an imaginary wall for weeks, I've think my second composition (another mazurka, of course--I'm obsessed) is finally making progress.  And now I'm wondering--why is it that a G goes with a C chord, but if you put an F with it (at the same time) it doesn't--now it goes with a G chord.

I've wondered something like this before--during the Song of the Volga Boatmen in John Thompson's Kindergarten book.  Really.  I like John Thompson a lot.  I think he's underrated as a composer.

Anyway, back to those boatmen--the song is played all in a scale from A below middle C to F above.  No G.  And the lack of a G is critical.  This song is played all in the scale of C, but it's really in A minor.  A G# would mark it as A minor, but there isn't any.  So how do we know it's really in A minor?  It just sounds like it--when you listen to it, it's screamingly obvious that it's in a minor key.  But it could be in C.  It even starts on C.            C - A - D - A          B - C - A - D - A.          B - C - F - E - D - C - A - D - D - A.  There isn't any accompaniment.  This is a kindergarten book, after all.

You're not still reading this, are you?  You should be very proud of yourself.  Or slightly worried.

Anyway, I think it has something to do with that second note.  It starts with C, which could be going anywhere, but when you add the A it sounds like it's starting an A minor chord.  But even after the third note, it's easy to take the song into a major key.  It's still possible after the fourth note, too.  Maybe it's the way that fourth note is emphasized--the way each musical phrase ends on A.

Okay, I'm done talking about music now.  I'm going to go play some more.  See ya!

I have a number of things to talk about....

Firstly, I've added a couple of things to the bottom of the candy jar (part-way down the right side of this page).  You should definitely take a look if you're bored.


Secondly, My mother now has to fill out a ream of paperwork about my disabilities.  I feel a little bit sorry for her, especially since she's already done this once before.  I'm just going through the motions at this point, but I'm dragging her along with me.  They'll probably send another pile of papers to my husband, as well.

I have what are probably the two mainstays of diagnosing CVID--the blood test (repeatedly) for low levels of antibodies, and the blood test that shows that a pneumonia vaccine didn't 'take' (I still have no immunity to pneumonia).

What I really need is a doctor and a neurologist and a lawyer.


And thirdly (if you're still bored (or, sadly, even more bored than when you started))--on a happier note, I might not be such a sorry excuse for a geek after all.  For the last couple of weeks I've been reading all about numbers on the internet.  You might be a geek if you have favorite kinds of numbers.  I like composite numbers--numbers that aren't prime.  The more tiny little factors a number has, the better I like it.

Some numbers have their own name--for example, a 'dozen'.  12 has several factors--1, 2, 3, 4, 6, and 12.  Then there's a 'gross'--144--12 x 12, or 2 x 2 x 2 x 2 x 3 x 3.  There's even a 'great gross'--1,728--which is 12 x 12 x 12.  Cool, huh?


Just in case you're really, really bored, I also like triangular numbers.  You might have heard of square numbers--1 x 1 = 1, 2 x 2 = 4, 3 x 3 = 9, 4 x 4 = 16, and so on.  Well, here are the triangular numbers--1, 3, 6, 10, 15, 21, 28, 36, etc.  The thirteenth one is 91, which is 7 x 13, or a quarter of the days in a year (calendars are cool, too, aren't they?).  The thirty-sixth (6 x 6) one is 666 (the biblical number of the beast, DCLXVI in roman numerals).  The 50'th one is 1,275.  The 100'th one is 5,050.  And the 144'th one is 10,440.  I've learned this week that there are also pentagonal and hexagonal numbers (but don't worry, I'm not going to talk about them today).

Triangular numbers also look like this:

1   X


3       X
     X     X


6           X
        X       X
   X       X      X


10             X
            X      X
       X       X      X
  X       X       X      X


Pretty geeky after all, aren't I?

Let's Pretend!

Pretend you are a child.  You are in the kitchen, and your mother is in the bathroom.  You're wondering if there's bread in the freezer.  Your options are:

(A) Look in the freezer.

(B) Go all the way across the house to ask, through the bathroom door, if there is bread in the freezer.



Maybe it's some form of temporary insanity induced by being compelled to listen to the same Schubert impromptu 5,000 times in six months.

....And Even More Paperwork!

Well, I still have the letter saying I've been denied Social Security benefits, but yesterday I got more paperwork to fill out.  I guess it couldn't hurt.  Although they want me to go see their doctor.  This has happened before.  Unfortunately, with my complete lack of direction (topographical agnosia), it's just about impossible to drive anywhere new.  My husband will probably have to leave for guard duty too early to drive me to the appointment (and otherwise he'd probably be working), and I just don't have anybody else to do it.

Filling out the paperwork is depressing enough.  I even put a few blog posts in the envelope, posts that I thought were especially representative of what happens when I get sick.  In a strange sort of way, looking back through the posts, I felt sorry for how sick that poor person was.

I know that this is almost certainly hopeless.  And I've had it with focusing so much of my attention on what's wrong with me.  This should not be the most important theme of my life--"What's Wrong with Deb?".  It's depressing to once again be cataloguing all the jobs lost, the illnesses and neurological issues, and all the things I want to do with my life that I can't, while simultaneously reliving all the times when someone or other hasn't believed that anything was wrong with me at all, because I know that's the conclusion Social Security will come to yet again.

I just can't resist filling out the paperwork as long as it's here.  So I filled it out and stuck it in the mailbox and blogged about it and now I'm done, at least until they deny me again.

And maybe a physical would have been good for me--lately I've been having an odd pounding heartbeat, kind of irregular, off and on.  The first time it happened was when I was really sick this winter.  I haven't had my blood pressure or anything else checked in quite a while.  I would really like to be taking better care of myself.  I've been making a real effort not to stress over all the paperwork and financial problems.  My husband is still not working full-time, and the bills are piling up, and all I can do is try not to think about it.

The good news is that I've actually lost about seven pounds lately.  I've finally figured out that I need to have a low-fat snack once in a while--it's just not enough sometimes to eat a teensy little meal and then run around all morning doing yard work and housework and exercising and practicing piano, followed by another teensy meal and more running around.  I think the occasional snack is actually helping.  It also helps to be healthy enough to do all that running around, as well as not having to take all that prednisone (one of the side effects is weight gain).  I never know when I'll be back in the chair, upending the bottle of prednisone again, but for now I'm exercising.

I'm still working on that Schubert impromptu.  I've mostly gotten it--now it just needs a whole lot (a whole lot) of polishing.  I've already picked out another piece--Chopin's Mazurka op. 50 no. 3.  It wasn't easy to pick one from among all the mazurkas--it's like trying to decide which is my favorite child. (wink)

I'm off now to check facebook and email.  Bye!

Woman Born at Age 22!

More paperwork from Social Security today.  I'm supposed to look over their list of paraphrases of statements I made to them and let them know if any of them need correcting.  Since they've already denied my claim, I don't really see any point to my correcting their information, but I did look it over--after all, they could have had the wrong Deb or something.  What was funny was these two lines, one right after the other:


"I am disabled.  My disability began on (my birthday).

I was not disabled prior to age 22."

Huh?

They also screwed up one of our vehicles--they said we both owned it when it belongs to only my husband, and they said it's seven years older than it is.

This stuff is just not worth correcting, but last time I applied....

They thought I'd worked in 2008.  I  had a heckuva time fixing that one--they wanted the IRS to send them a statement saying that I had not worked in 2008.  Guess what, the IRS doesn't do that.  Social Security also wanted me to tell them where I had worked.  Imagine me trying to explain that I didn't know where it was I was supposed to have worked, since I hadn't.  Finally got it fixed somehow.

I wonder how many of these errors cause real harm.  And that job-that-didn't-really-exist happened right around the time I lost my benefits--I wonder if that contributed to my losing them.  They say it didn't....



I just finished reading (in a comment section to a news article) about a gentleman who was working, saving money, paying for health insurance,and apparently physically active because he was on a bicycle when the accident happened.  It sounds as if he'd been doing everything right.  Well, after a quarter million dollars in medical bills (which insurance paid), lost vision in one eye, lost fingers on one hand, he can no longer do his old job.  He's now unemployed but not getting unemployment (because he's disabled) and not getting Social Security (because they say he's not disabled).  He has no insurance, and he's running out of savings.  He wonders how he'll continue to treat his diabetes once the money's gone.

Wow.

It's a Neighborly Day in the Beautywood

I just loved Meow Meow Kitty.  Really.

Well, I've been told by Social Security that I'm being denied because I was denied before and nothing has changed.  (No, it certainly hasn't.)  They say that I have never been sick at any time before 2008.  Not sure what's so special about 2008.  There was a screw-up once where they thought I'd worked that year, but I thought we had that straightened out--it didn't even show up on the list of my jobs over the years that they sent me.  (I'm also thinking that if I were (officially) sick now, it wouldn't really matter if I'd been sick five years ago or not.)  But I'm not sick.  Notwithstanding that seven-year period when I actually got benefits from them.  I'm surprised they haven't asked for their money back.

Anyway, the weather's beautiful outside.  I've been out mowing and whacking weeds with the weed whacker and trimming things with hedge clippers.  Think I'll pull a few weeds this afternoon, too.  And tidy up the house a bit.

I've decided I just won't think about that other stuff any more.

Go away, reality.

This is an old article (2004), but I just stumbled across it today and thought it expressed what a lot of people have gone through very well:

http://www.nytimes.com/2004/04/29/us/finding-out-adults-and-autism-an-answer-but-not-a-cure-for-a-social-disorder.html?src=pm

A lot of older people are still finding out after years of struggling that they have Asperger's syndrome.  A lot of them out there don't know yet.   Much in this article resonated with me--being the 'black sheep' who was apparently just lazy, thinking that if I kept trying I would one day start to 'get it', and then everything would be fine.  I was one of those twenty-somethings who couldn't keep a job and had never had a date and still lived with her bewildered parents.  Extended family made comments to me and to my parents about me getting a job.  But, in spite of all the evidence to the contrary, I really had hope that eventually I would 'make it'.  I miss that youthful, hopeful feeling.

One gentleman in the article lost twenty-six jobs in twenty years.  (He's on government assistance now.)  It takes a lot of gumption (and maybe denial) to keep trying for twenty years in the face of that kind of failure.  I should know--I've had quite a few jobs myself, over a span of about fifteen years.  I've recently given up trying to get assistance, after being rejected by agencies public and private over and over again.  I've also looked for work I can do from home from time to time since I was twenty, but without any luck.  Right now I just can't do it any more--it's too depressing.

I used to live inside a little fantasy world where I just kept thinking that if I tried hard enough, one day I would be normal.  It was too frightening to even contemplate coming out.  (I also kept pretending that the repeated bouts of debilitating illness were just temporary.  Which is maybe understandable after three or four bouts--after thirty or forty it takes a real talent for distancing oneself from reality.)  I thought I would graduate high school and then it would be ok.  When that didn't happen, I thought I would get my G.E.D., and then a driver's license, and then it would be ok.  Then I thought I'd find a job I'd be good at.  I thought I'd get married and meet new people.  After all the failed job attempts, I tried to make it ok by going to college.  I joined a couple of churches hoping to make friends.

Then, finally, I found out what was wrong.  I honestly thought it would really be ok then.

It sucks to know that it's never going to happen.  I'm less clueless than I used to be, and I have labels for most of what's wrong with me, but still....it will never be ok. 

In some ways I'm better off, but still--reality sucks.  No wonder I didn't want to come out here.

Why do we want to control Ann Romney?

Feeling much better today. :)  We went to the library downtown and I had no idea how much walking a couple of measly little blocks would wear me down.  I thought when I felt better, that meant I was completely fine.  Oh well, now that I've caught my breath again, I still feel fine.  Guess if there was a mountain nearby, I'd be well-advised to put off the climbing expedition.



And now for this weeks rant:

In January, Mr. Romney said that he wanted parents on welfare, even parents with young children, to have the "dignity of work".  This month, a statement was made that his wife, Ann, "never worked a day in her life".  The implication was made that Mrs. Romney is not qualified to state an opinion on women's economic issues.  (Perhaps the accusation was correct, because she's never been poor, or even middle-class.  And I think that from now on I should refrain from having any opinions on civil rights because I have never been a member of a minority....anyway....)

Not that many decades ago, it was scandalous for a married woman with children to be working outside the home.  It even shamed her husband.  This policy actually made sense historically, in a world where somebody had to make the clothes from scratch, wash them by hand, cook the food from scratch, preserve food for winter, and help tend the animals and a garden, in addition to popping out baby after baby after baby.

Birth control changed everything.  It freed women to make a choice to work.  And the next thing you knew, the economy wasn't doing so well and it became a necessity for many women.  Then an obligation for every single one.

Because the disease I have isn't always visible to the casual observer, people generally assume that I planned not to work, planned to stay at home and homeschool.  But I didn't.  I sometimes fantasize about being a concert pianist/composer, or a college professor in math or physics, or even a college student again, or a writer.  (or a singer or empress of the universe....wait, where was I?)  I don't usually fantasize about being a stay-at-home mom.  No need, I suppose.  (I don't generally fantasize about being trapped in poverty, either.)  I am an accidental stay-at-home mom. 

But I resent the implication that I never work.  My husband hardly ever has to lift a hand around here.  While I do have the children help with chores, everything is ultimately my responsibility.  Homeschooling has certainly added to the workload.  And, not surprisingly, being with four children day in and day out with few breaks is often stressful

Then I remember my mother--she didn't 'work', either.  At first it was by choice, before she developed severe RA that now has her in a wheelchair.  But she was always busy, and she made our home a safe and cheerful place in which to grow up. 



I also resent the implication that I don't have dignity.  Other people may or may not believe that I deserve to have dignity.  But, funny thing, you can't get dignity from other people.  You have to give it to yourself.  When I get up in the morning and do chores and yard work and paperwork and exercise and homeschool and practice the piano and try to be a decent and cheerful human being, I have dignity.  (And when I wake up and spend all day in a chair because I've got pneumonia, that dignity does not automatically disappear.)

And then I have to wonder....if Mr. Romney makes enough money for his wife to stay home, whose business is that anyway?  Isn't this supposed to be a free country?  Women have fought for all sorts of rights in this country.  Now it seems we have the right to work, but not the right to stay home.  (And a blog post for another day....the right to have an abortion but not the right to have more than two or three children.)

One more note--I've recently devoured a book on Mormonism (The Mormon People by Matthew Bowman).  I learned that as recently as last year, a leader in the Mormon church said, "....we should all be careful not to be judgmental or assume that sisters are less valiant if the decision is made to work outside the home." (yep, those italics are mine)  This is the culture that Mrs. Romney is coming from, a culture that encourages women to stay at home and have large families.

I guess what's right all depends on what year it is and what part of the country you're from.  Maybe one day we'll all be free to choose what's best for ourselves.



 

Help, I can't find my operator's manual!

I still have the cold or whatever it is, but I've only taken a little more prednisone.  I'm tired (today I've started feeling better off and on, though), a bit short of breath, especially if I try to do anything especially strenuous, like climbing a flight of stairs. (sigh)  But, given what could (still) happen, I'm pretty happy to be able to mostly function.  So far so good--I haven't won the battle yet, but neither has the cold.  It's been a good couple of days to print out lots of homeschool worksheets in advance--that's not too physically demanding.  I'm happy to still be able to play the piano.




In my never-ending quest to explain to my fellow human beings (if indeed that's what I am) Why I Am the Way I Am, I've decided (see my Apr. 5 post) that perhaps I really am twins.  Seriously.  You'd know I'm telling the truth if you could see the subtests on my IQ tests.

Twin A has wonderfully high scores.  She should have gone to college and gotten a doctorate in something.  She plays Chopin mazurkas, reads just about anything she wants, knows how to spell almost everything, and is really good at math.  She got A's & B's in school.

Twin B wasn't so lucky.  Some of her scores are low enough to merit her confinement in an institution.  She can only drive to a few places, can't recognize people, sucks at anything mechanical, doesn't see things that are right in front of her, doesn't hear a lot of what's going on around her.  She has lousy eye contact and doesn't get facial expressions in general.  She got D's & F's in school.

Sometimes people meet Twin A first.  After they meet Twin B, they decide she (they?) is (are?) either being really difficult, or that there's some kind of mental illness going on.  They get angry at her for not trying hard enough.

If they meet Twin B first, they pretty much ignore her (them).  They have a lot of trouble believing Twin A actually exists.

It's almost funny, the way, once people pigeonhole you, they almost never change their minds, no matter what evidence you present them with.

I can see why people get confused.  I get confused.  And just to make sure everybody stays confused, once in a while Twin B remembers how to get somewhere (maybe because she memorized every street and direction on the way there and back and then got lucky that it worked) or recognizes somebody (because she knows she needs to memorize that the waitress has blond hair, a wide face, and a nose stud or she won't be able to find her later), thereby 'proving' that she can do it if she really tries.

I should have been born with an operator's manual.

Death Star Dinosaur Aliens Could Rule Galaxy

OK, this is my favorite headline so far this week, courtesy of google news online:

Death Star dinosaur aliens could rule galaxy


"Rather than dying out in the dimly lit aftermath of a ginormous asteroid impact, dinosaurs on Earth may have instead spread to other planets and built a terrifying space-conquering empire."

Seriously?  Anybody ever watch "V"? lol

I have actually wondered:  if there had been a civilization 65+ million years ago, would there be any evidence of it left today?  The pyramids are already starting to crumble.

This is what I want.  (imperiously) More sci-fi with breakfast!

:(

Woke up with a little cold this morning.  I sure hope my next blog post isn't going to be 'Here We Go Again".  I'm having just a little bit of asthma.  I started taking antibiotics prophylactically (means as a preventative measure) this morning.  And I've made sure the house is (relatively) clean and the chores are caught up.  I feel like crap.

This is what I get for going out in public--it might have been that Easter dinner at the restaurant with my parents.  I remember a moment of concern when I saw somebody walk past our table sneezing.  Every time I go out I'm taking a chance.  Every time anybody in my family goes out.

Wish me luck again.

Way to Go, Dr. House

http://www.fstribune.com/story/1834107.html

April is Primary Immunodeficiency Month (as well as Autism Awareness Month).  The woman in this article was diagnosed with CVID at age 54, after her physician saw CVID on an episode of House, M.D..

More Government Assistance

OK, let's forget for the moment that I have a serious, life-long disease that's related to the 'boy-in-the-bubble' disease.  Let's forget that I'm quite often too sick to work, and that exposure to lots of people with all their attendant illnesses will make it worse.  Let's forget that I'm so sick sometimes that it's completely unreasonable to expect me to get dressed and brush my teeth, let alone drive myself anywhere.

Let's also forget that I can only drive to a dozen places, that I'm perpetually lost wherever I go, that I don't recognize people or tools or parts of any kinds of mechanical things, that, by the way, I don't hear very well.

Let's forget all that.

Okay?

Now then, I've just received these two forms from the welfare/food stamp/medicaid people.  Here are quotes from both of them.  You should know that IMPACT is an employment training program.  The bold print is mine.

Number one:

....you have been scheduled to begin your participation in the IMPACT Program on WEDNESDAY, APRIL 11, 2012 at 9:00 AM at the IMPACT Office....

Number two:

....You are scheduled for a phone interview on APRIL 11, 2012 at 8:45 AM....you must remain available for at least half an hour after that time.  Your interview will take approximately one hour.....

I just don't know what to say. 

Apparently they are suffering under a serious delusion.  They think I am twins.



Regardless of my inability to put myself in two different places at the same time, I don't see myself quitting homeschooling and putting my kids in public school in the middle of the year so that I can enter a works program that I'm certainly going to fail at.  Is it too defeatist after forty-six years of disability to say that I would fail at this?

I give up.

Social Security Disability (or, We're the Government and We're Here to Help You)

Well, I've gotten some paperwork from the Social Security Administration.

This is good.  They should be required to affix a warning label to this paperwork.  Something like "WARNING:   This paperwork may induce swearing, muttering, ranting, whining, and possibly excessive drooling."

I'm used to dealing with government agencies now.  I'm used to the idea that my paperwork has to reach them within 15 days (no matter what paperwork I have to send away for and wait for it to get to me first, and no matter how long it takes them to respond to anything I ask for).  And I'm used to the SSA asking for my SS number--after all, maybe they just want to make sure I know it.  But I'm sharing this with you (assuming anybody's actually reading this) because this pile of bullxxxx paperwork is special.  (I'm smiling sweetly but you can't see it.)

First, there is a cover sheet that says that a telephone conversation took place that never actually did.  Then a statement that I am not eligible for SSI because I have not applied for it.  But I did.  Five days ago.  Why else would they send me this pile of crap paperwork to fill out?  Maybe they've started sending these forms out at random and this is just a lucky coincidence.

But forget that last paragraph.  That was nothing.

This time they have a list of how much money I made at every place I ever worked.  I know because they sent it to me with the pile of horse manure forms.  What they want now is for me to fill out a form for each job.  For each place, they want the phone number.  And the fax number.  The date I started and the date I ended.  The rate of pay.  And all of my pay stubs.



Please understand.  I am (not too ashamed to admit it) forty-six years old.  My first job was in 1986.  Twenty-six years ago.  There were a couple of short-term jobs on that list they sent me that I had to think about before I even remembered having them.

Somewhere far away from here there just might be an elderly person (who desperately needs a date or something) who has a closet full of shoeboxes containing every single paystub they've ever received.  I have none.  Not a single paystub.  I haven't worked for fourteen years.  I've never considered myself to be an especially (or even adequately) organized person.  But I've somehow managed to throw out all my old paystubs.

Not to fear, though.  If I don't have the paystubs, I can give them the information--date earned and amount for each missing stub.  Apparently I could have been keeping this all in a little notebook somewhere, which at least would have had the virtue of taking up less space than all those shoeboxes.

Why, oh why, did I hesitate to file once again for Social Security?

Oh well, I've done my duty--filled out the shxx tonight, so I can stick it censored in the mailbox tomorrow, so it will hopefully get to the musn't forget my kids could read this SSA on time.

Wish me luck.

I'd rather be Omnipotent.

I'm still here!

I've just been healthier and doing yard work and the usual stuff--housework and homeschooling and piano.  I haven't given up on that Schubert piece yet, and I've been playing a lot of Chopin (my favorite).

Then I saw this news article and thought I should post it here:

http://fox13now.com/2012/04/02/with-autism-no-longer-invisible/

I was especially intrigued by the idea that someone is trying to get a computer program up and running to teach autistic people how to make 'appropriate' facial expressions.

I've also been (once again) starting the process of applying to different government agencies for help and looking for some kind of work I can do from home.  My husband is barely working.  It's not as if he hasn't looked.  He's worked his whole life.  He's just graduated college, even.  But the money from our tax refund is gone now, and I'm starting to feel more worried about money than I usually do.  I'm lucky to have family members who will help out for as long as they can, and would even take us into their homes.  Sure don't want it to come to that, though.

Trying to get help is a hopeless activity for me, but it's all I can do.  I've applied for food stamps and medicaid again, but I'll probably be turned down because they want me to enter their works program.  As it is, I have to apply for benefits over the phone (not the way they prefer) because I don't know where their office is.  Finding interviews is hopeless.  If I studied hard I might be able to find a couple in familiar places (if I can be said to even have familiar places).  It sucks sometimes only being able to drive to a dozen places, although I try to be grateful that I can drive at all.  At least I can take care of the basic routine errands like grocery shopping, and I can visit my parent a half-hour away.

I've also applied for Social Security (again), but that's fairly hopeless as well.  They want medical records, but I just can't afford to see doctors.  (Can't afford the mortgage and utilities, either.)  I've been diagnosed with CVID and asthma in the past, but the government wants current records.  I've been diagnosed with prosopagnosia as well, but not the rest of my neuroligical 'issues', except for a CAPD diagnosis as a teenager for which there is no record now.  If I ever get medicaid I'll start getting things diagnosed in a hurry.  As long as I can find a way to get to the doctors' offices.

I've started trying to do something each day to look for help.  Today I got into my word processing program and found a resume template.  I've tried in the past to find work I can do at home.  Being disabled (I spelled it wrong and spellcheck suggested 'disturbed' lol) might qualify me for some programs.  But everybody wants a resume.  So I've finally typed one up.  It was frustrating.  So was documenting all my problems for Soc. Sec. again--it's not fun to be reminded of all the things I've failed at in the past, and all the things I'd like to do now but can't.  All things considered, I'd rather be omnipotent. 

Back to the resume.  Frustrating.  A frustrating joke.  I have no degree, just a GED.  I erased the education section.  I have a work history that a teenager might be proud of--math tutor, three years of summer jobs at minimum wage, taking catalog orders over the phone.  But I have that resume now, the one that the websites insist I must download if I want to apply for anything.  I hope that the family physician I haven't seen in years will be willing to fill out the paperwork for these programs.  He's a wonderful guy, but this is probably too much to ask.  I'll ask anyway, though.

Doing work over the phone is probably out--it's not usually that quiet here with four kids, and with the CAPD it's hard for me to hear things like names and numbers that I would most likely need to hear.  This makes it impossible to work almost anywhere I'd have to work with people--waitressing, fast food, cashiering--all out of the question.  I've tried.  I'm hoping (okay, not really hoping, more like fantasizing) that I'll be able to find somthing as a typist.

This is a bit like being sick--the difficult thing about it is keeping my spirits up.  I try to do that something-I-do-every-day-to-look-for-help in the morning so I can get it over with and try to be happy the rest of the day.  So I didn't find it helpful yesterday when someone took it upon themselves (when are we going to get a legitimate pronoun that's not gender-specific for him/her?) to remind me that my kids should get field trips/vacations and they don't (because we can't afford it and because they're not in public school).  Often people don't say these things to my face.  I like to think that's because they know I wouldn't tolerate it.  People who haven't answered phone calls and emails from me for so long that I've given up trying should probably not complain about the isolation here, but if they're going to, doing it behind my back might be the safer course of action.

There, I feel better now.

This was actually triggered by the good news that my eldest girl is going to get to go on a mission trip for a week in another state this summer.  Yay!  This should be a good experience for her.  While I'd love to take everybody to Disneyworld this summer, helping homeless people might be better for her.  It's not that she's spoiled, it's just that maybe everybody should get exposed to real poverty once in a while.

I saw part of "Mr. Holland's Opus" this morning on TV.  I've always found it difficult to watch--the frustrated dreams, the deaf child who's such a disappointment to his father.  But today I found yet another reason why my kids aren't in public school.  Not only because I don't think it's the best environment for anybody's kids.  Not only because I've been concerned with the learning disabilities/neurological issues on both sides of the family being passed down, and I didn't wan't one of the things my kids learn early in life is that they're a failure.

It never would have occurred to me to complain about it before.  There were no dreams for me in public school.  No dating or parties or sports or any of those oh-so-important field trips.  No teachers trying to show me the beauty in literature, or math, or science.  Wait, there was one teacher who took just a bit of an interest in me, noticed that I wasn't retarded.  I've actually looked for him on facebook--haven't found him yet.  I'd like to thank him one day.

You just never know when you might have been that one person.

Anyway, there were no hopes for the future for me in school.  No dreams of college or success of any kind.  And then doing the resume today--what was I supposed put under 'objectives'?  People like me don't have 'objectives'.  They have something else.  It's called 'survival'. 

What was I supposed to write?  That I'd like somebody to graciously grant me minimum-wage job suitable for a retarded person?  I know that word isn't politically correct these days.  But I've been called it enough times to feel like I've earned the right to use it.

Some days I don't know what I'd do if it weren't for Chopin.  Some days I can see why people who live in poverty would turn to drugs. 

I don't think looking for government assistance and employment is good for my mental health.  I don't even think blogging about looking is good for me.

I think I'll go play a few nocturnes now, and then I'll clean something....