Autism All Around

Celest's Playlist

2011-11-20T20:48:00.000-05:00

Celest has decided that she wants to use my headphones and laptop to listen to music on YouTube. She's had fun with it. I, however, had to figure out what she was talking about some of the time. Here's her list for today so far:

Muse Butterflies and Hurricanes
Muse Take a Bow
The Beatles The Continuing Tale of Bungalow Bill (or whatever the proper title is)
"Moby Honey Play" as she called it; the song Honey from Moby's album Play
Muse Razor Blades
oble-doble-doble-oble (and some other syllables that sound roughly like that)- she wanted Ob-la-di Ob-la-da by the Beatles- This one was my favorite to figure out.
Muse "Museum"- actually Muscle Museum
and "coming unplugged", which I never did figure out for her. Nothing that showed up on YouTube was what she was looking for.

She's feeling a bit musical today, I suppose. I brought my bike and magnetic trainer set up in the house so they could get some exercise, and she's been plucking the brake line and telling me it's a guitar string.

Bah! And Other Things.

2011-11-20T17:43:00.000-05:00

I haven't posted on this blog since July. Which certainly isn't to say that my life hasn't been affected by autism since then. I have just had no will to write about it.

It's been a long ass year, and the girls are dealing with it pretty well. We moved on September 6th, and they've dealt with it very well. They don't seem to miss the old place (we'd been there since December 2002 until September 2011). In fact, they seem to really like the new place.

However, I'm not dealing with all of the changes so well. I don't like seeing my kids growing up (as weird as that may sound). I don't like puberty. I don't like the fact that we will have to go to another school next year because the district pretty much told me they have nothing appropriate for the girls past the seventh grade.

I don't like not knowing what the future holds. I've been dealing with the fact that I won't be able to keep and protect the girls forever. If for no other reason than the fact that I will die some day.

But, also because I can't keep a "regular" full time job with them. I can't afford much of anything since the move. I haven't lived on my own since 2002. Within two months of moving I've lost my main source of income. I'm struggling to figure things out at this point, but I have come to the conclusion that I have to be able to make it, so I will.

The girls are for the most part oblivious to my depression at dealing with such things (or so they let on). That is a good thing. I like that they don't have to worry about this part of life.

I've really connected with some other parents of kids with autism (or as I call them, autism parents) online. I met a mom of a newly diagnosed child, and it feels good to be able to help her out with information when I can. Still, it feels like a very lonely and isolated world of autism that the girls and I contend with. Or rather, that I contend with, because most of the time they are pretty happy.

I Was Never Really a Fan to Begin With, But Now I Have More Reason Not to Like Lady Gaga

2011-07-13T14:19:00.001-04:00

Aside from the fact that she took her name from the Queen song "Radio Gaga" because her manager compared her vocal skills to Freddie Mercury's (which is a joke in and of itself!), I've never thought much of Lady Gaga. She comes off as a pretentious, pseudo-intellectual, gay panderer. By that I mean I think she tries to be super "gay friendly" to get that market share, not because she actually gives a shit about the problems gay people go through.

However, in a recent interview she showed her open-minded acceptance of others particularly well. While bashing people who accused her song "Born This Way" of being a rip off of Madonna's "Express Yourself", she said this: "No. Listen to me. Why the [expletive]...? I'm a songwriter. I've written loads of music. Why would I try to put out a song and think I'm getting one over on everybody? That's retarded."

Yes, Mrs. Champion of Individuality, open minded hero of the downtrodden and sexually oppressed. Using "that's retarded" is a very sophisticated, intellectual response to criticism. And rather artsy too. Just like her high brow, cutting edge, "deep" lyrics. Some examples: "Cause I'm bluffin' with my muffin", "Cherry, cherry, boom, boom, ga, ga", and "Let's have some fun, this beat is sick, I wanna take a ride on your disco stick".

I can't claim to fully comprehend the depth of her artistic craft. But I can say that resorting to name calling, pejorative usage, and slandering people with intellectual disabilities isn't exactly taking the high road in an argument. Sounds a bit defensive to me, in fact. Just my thoughts.

Summer Time

2011-06-12T21:10:00.000-04:00

We've yet to do anything too exciting this summer. I'm trying to think of things, and I've come up with a few local trips we can do. Nothing too exciting.

We begin our extended school year tutoring tomorrow, so maybe we'll come up with some fun yet structured things to do around the house on Mondays and Tuesdays. : )

The girls turn 13 in nine days!!! I've yet to get them anything for their birthday, but they don't know that yet. Geez, I feel old.

The School Year is Almost Over

2011-05-20T23:20:00.000-04:00

I'm back to that slightly evil feeling I get when I wish the school year wasn't over. It's not that I don't love my kids and enjoy being around them. It's just that they get bored easily and I have trouble entertaining them. Then things can get ugly.

For instance, when bored, their hobbies may include:

throwing temper tantrums for no apparent reason
going to the bathroom every 5-20 minutes and getting naked/making a mess
fighting over the TV remote, ipod, and/or my cell phone
mindlessly eating snacks
sneaking out of the room I'm in to get into something they shouldn't be

I work from home the majority of the time, so this can make my work situation a smidge less than optimal. Also, I feel guilty for working instead of doing things with them. Then when I'm doing things with them I'm thinking, "I need to get to work!"

Anyway, whether or not I'm ready, schools out in roughly two weeks.

Autism Awareness Month

2011-04-12T21:08:00.000-04:00

I've gotten pretty far out of the loop on advocating, attending rallies, and other autism activities. I feel kind of guilty about that. Then I realize that I do the best I can for my daughters every day, and that is helping out with autism. I try to let them experience life, even though it is rough with their abilities sometimes.

I always feel like I'm not doing enough. I wish I could handle them 100% by myself, but I know I can't. I need help, but at the same time I resent needing help. But the mature side of me knows that what is best for the girls is accepting help when it is needed.

Each parent and caregiver is different, so I can't claim to speak for them all, but here are some things I'd appreciate others knowing about autism:

Not all people with autism have special skills or are like Rain Man. Less than 1% are considered autistic savants. And no, my kids aren't in that tiny group.
Kids with autism may appear "bratty" in behavior but most likely they are having a meltdown that they can't control. Staring at them will only embarrass/enrage their caregivers and companions.
Offering to help is fine. Offering holier-than-thou or sarcastic commentary/advice is not fine.
Asking questions is okay, as long as my kids aren't running amok or having a meltdown. I am very open and love to talk about autism with people who are genuinely interested. Just know that if my kids are present I'll probably be very busy keeping them on task.

I hope I can get more involved in the autism community as my daughters get older, but they will always need cared for so that may have to stay a lower priority for me for some time. I encourage and appreciate what others can do to spread awareness and stop prejudice. Thanks for your help if you've done your part.

Squeaky! And Other Stuff...

2011-03-29T17:10:00.000-04:00

Celest has decided to start squeaking throughout the day. I'm not sure why this is exactly, other than I think she likes the feel of making the sound and the sound itself. She just keeps making a squeaky noise. I don't know exactly how to describe it.

Aside from this, the girls have both decided to sample music in very tiny sections. Generally the first 1-10 seconds of a song. I almost lost my mind hearing the first three seconds of ZZ Top's "Cheap Sunglasses" last night. I can still say I've never heard the full song, since I was never allowed to hear past maybe the fourth or fifth second when she was slow about restarting the song. Good times. : )

The school year is almost over, and I don't know that I'm quite ready for that yet. I haven't figured out anything in particular to do with the girls this year. They get so bored during the summer that they tend to have more behavior problems. I'm still trying to work on something fun for them to do. Too bad I'm not comfortable with most camps for them. I think they'd really like a day camp.

Other than that, there hasn't really been much going on. Aside from the squeaking and sampling, that is.

Senator Agrees With Hitler's Treatment of the Mentally Ill

2011-03-13T20:54:00.000-04:00

This guy should be ashamed of himself. Here is an excerpt from the article:

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that “the world is too populated” and there are “too many defective people,” according to an e-mail account of the conversation by Omand. [...]
Harty confirmed to the Monitor that he made the comments to Omand. [...]
Omand says Harty then stated, “I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population.” Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, “Hitler did something right, and I agree with (it).”

Here is the full article:
http://thinkprogress.org/2011/03/11/gop-senator-siberia/

Cracked iPod/iPod Crack

2011-02-27T10:51:00.000-05:00

Celest managed to put a large crack in her iPod touch, which from looking around online at Apple repair quotes it looks like it will cost $99 to repair (I paid roughly $200 with tax for the iPod touch new). This experience has also taught me that she is addicted to her iPod more than I realized. Though we have two iPods, the only one she wants is the cracked one.

This morning she ran through the house screaming for her "phone" (I have an iPhone so she calls her iPod a phone) and shrieking "baby, baby, baby!" every time I told her that her iPod was broken. She rolled in the floor, stomped around, and did an overall grade 8 tantrum (with 10 being the worst). It took her about an hour and some baked cheddar cheese & sour cream Ruffles to settle down. I'm hoping her iPod withdrawal doesn't flare up again later today.

More Joys of Puberty! (or Will I Survive the Next Six Years?)

2011-01-23T07:37:00.000-05:00

The girls are having a rough time, I'm assuming because of hormonal fluctuations. We haven't reached the big M yet (or P, depending on what you call it). I'm thankful for that.

However, we have achieved some super-mega fury tantrums. I have a big bruise on my arm where Celest pinched the holy-heck out of me. She was biting, pinching, and hitting both herself and me. That's after she tried to hit Lotus as well. After about 30-45 minutes the rages pass (with or without the help of some calming medicine).

Lotus has a more sneaky method of unleashing her fury on me. She acts like she wants me to sit next to her and cuddle her. Then she'll lean toward me for a kiss. Next she allows her true intentions to be seen: she grabs my head and mashes it into her head. And, if I'm really lucky, she'll pull my hair and try to head butt me in the face.

Good times are had by all. : ) Honestly though, I hope that this phase passes soon. And/or that I find a better way to end the bad moods more quickly.

Oops! Back to Our Regularly Scheduled Program...

2010-12-17T22:39:00.000-05:00

Last week I ended up going to the ER due to back pain. I thought that maybe I had a kidney infection, which is why I went to the ER. Turns out that it was back pain due to my bulging disc and muscle pain.

I've never had a muscle spasm in my back quite like that before. It was like having a charlie horse along my thoracic and lumbar spine. Luckily steroids and non-steroidal anti-inflammatory cleared up almost all of the pain. I can move again! : )

Them Bones

2010-11-28T12:19:00.000-05:00

Celest is hiding in the closet listening to Alice in Chains' "Them Bones". She keeps saying, "Aaahh. [pause] Aaahh." That's her imitation of Layne Staley's intro to the song. Funny stuff. : )

Holiday Giveaway Number 2!

2010-11-26T18:03:00.000-05:00

Congrats again to Pilar Pitty for winning last week's giveaway!

For this week's giveaway, I am offering a Swarovski Crystal Elements pendant. It is a 18KGP cherry pendant. There are two red crystal element beads and two white crystal element beads for leaves. I think it is a very cute pendant. The retail value is approximately $30.

There are two ways to enter:

Become a follower to my blog (this blog and/or http://www.randomtangentlm.blogspot.com/)

Add me to your favorite sellers/stores on eBay (http://stores.ebay.com/Autism-Twins-Mom )

With that said, you can actually have a total of three entries per week if you become a follower to both of my blogs and add me to your favorites on eBay you will have one entry per action. Once you follow my blog and/or add me to your favorites on eBay send me a message to laura (at) lbmeditorial (dot) com or leave me a comment to this post letting me know your username/Blogger profile and that you'd like to be entered to win.

If you win one week, you will be ineligible the following week, but the next week you will be eligible again.

And the Winner is...

2010-11-26T08:13:00.000-05:00

This week's winner is Pilar Pitty! I will be posting the new giveaway item shortly.

Ah, the Joys of Puberty! Revisited...

2010-11-25T07:45:00.000-05:00

Celest has recently discovered that she can see her "booty" in the bathroom mirror if she turns her back to the mirror, juts her hip out, and turns her head around to see it. And she certainly enjoys seeing it. I'll check on her if she seems to be taking too long in the bathroom and usually she has stripped down to her birthday suit, struck a pose, and is admiring her booty. (It'd be me that told her it is a booty. Maybe not such a great choice, in retrospect. At least I didn't tell her it was a badonkadonk.)

It is too funny to catch her admiring herself in the mirror. I guess I am happy that she seems to have the self esteem that I never had.

Lotus doesn't seem overly concerned with her booty, but she has decided she's not going to be pushed around any more. She picks fights with Celest over the video game and TV remote, toys, art supplies, and anything else she can think of. Usually it is Celest starting the fight, but Lotus gives as good as she gets (and then some!). At some point I think she snapped and I picture her going to the window, poking her head out, and yelling, "I'm mad as hell, and I'm not going to take it anymore! You hear me, Celest?!"

Giveaways From Now Until Christmas

2010-11-19T13:07:00.001-05:00

I am going to be having a drawing every week from now until Christmas. Each Friday a drawing will be held and the winner will receive that week's prize package.

There are two ways to enter:

Become a follower to my blog (this blog and/or http://www.randomtangentlm.blogspot.com/)

Add me to your favorite sellers/stores on eBay (http://stores.ebay.com/Autism-Twins-Mom )

With that said, you can actually have a total of three entries per week if you become a follower to both of my blogs and add me to your favorites on eBay you will have one entry per action. Once you follow my blog and/or add me to your favorites on eBay send me a message to laura (at) lbmeditorial (dot) com or leave me a comment to this post letting me know your username/Blogger profile and that you'd like to be entered to win.

If you win one week, you will be ineligible the following week, but the next week you will be eligible again.

This week the giveaway is for a large collection of new Jane cosmetics. Included are the following items:

5 Sets of Eye Zing eyeshadow, one of each color: white, blue, purple, peach, and pink
1 Curling Mascara
1 Color Stick eyeliner, shade number 04- Sitting Pretty
1 Barely Lips Sheer Lipstick, shade number 9- Little Pinkie (very popular in Greece this time of year, or so it seems-lol)
2 Megabites Flavored Lipsticks, shade numbers 12- Cinnamax and 25 Merry Berry
1 Attitubes Lipgloss, shade number 02- Cheerful
1 High Shine Gloss lipgloss
2 Gliding Liner eye pencils, shade numbers 03- Pink Moon and 10- Buttercup
1 Eye Brightener
1 Lightweight Cream to Powder Foundation Compact w/Mirror, shade number 04- Buff

The retail value of this giveaway is approximately $80.

Your information is completely confidential, and I will not share it with anyone.

To be compliant with the FTC, I do not work for Jane cosmetics or any other company affiliated with this or future giveaways. I am merely offering the giveaways as a cross promotion of my blogs and eBay store, and because I wanted to do something fun for the holidays with my blog. : )

With a Name Like "Super Meat Boy", I Should've Known...

2010-11-15T15:58:00.001-05:00

The girls bought about $75 worth of Xbox 360 game credits before we'd realized that they were actually buying things (this was about a month ago). So we changed the billing card to an soon-to-be-expired credit card to avoid further buying sprees.

However, since Microsoft has a strict no refund policy, we decided not to even try to get a credit. So, we had enough game credits to buy about four $19.99 games. I bought Plants vs. Zombies (which I already had on my phone and computer--however Lotus likes it so I thought she might enjoy having access to it when I have my phone & computer). I also bought Viva Pinata, which is a freaking huge game (over 4G). It refuses to download, so I need to get in touch with Microsoft and see if they can help me figure it out.

Then there was a silly looking game on sale, called Super Meat Boy. It said that it was rated T for teen, but I figured that the naughty stuff wouldn't be anything the girls could pick up. Really, when a block shaped guy flips you the bird with a block shaped hand it is pretty hard to tell he's being profane.

Also, the description states that the game is "devilishly hard". They aren't lying. I made it through Chapter 1: The Forest okay, though it definitely had tough spots. Then in Chapter 2: Hospital I was unable to complete any of the stages. Of course I'm probably below average in the skill department for this sort of game though.

Anyway, now Celest and Lotus both keep turning the game on and having poor Meat Boy die over and over and over again. Or watching the intro then logging out and back in to watch it again.

It is a neat looking game with an intentionally retro side scroller feel. And it is funny/quirky without overdoing it too much. Still, when you can't get past a certain point in a game it is annoying. And watching someone else repeatedly fail at a level on a game is just as much, if not more, annoying.

See More Super Meat Boy Screenshot at IGN.com

Estate Auctions and Wheelchair Escapades

2010-11-13T09:57:00.000-05:00

Since I didn't have anyone to watch the girls yesterday, I had to take them with me to pick up some items I'd won from an online estate auction.

The items were in a small shop along side a busy section of West Broad Street. They both got out of the car okay and walked in to the shop nicely as well. When we were waiting for a guy to help us find our items, Lotus spotted a large motorized wheelchair and hopped on it. I tried to get her off of it, but she started to do a 360 degree turn. As I reached for the joystick used to control the movement the foot rest knocked over a stack of DVDs and then it soon bashed into a table leg. Luckily the table leg stopped the chair's movement and I was able to get her hand off of the remote.

Fortunately the two guys working for the auctioneer were very understanding. It probably helps that we didn't destroy anything either. : )

I was embarrassed, but the girls had a good time. They were giggling and laughing most of the way home.

Ooh, Ooh, Ah, Ooh, Ooh, Ah!

2010-11-11T15:43:00.000-05:00

Celest came home from school and I heard her singing something under her breath. I got close enough to hear, and this is what she was singing, "We will, we will rock you. Ooh, ooh, ah! Ooh, ooh, ah!"

I thought it was kind of funny. She used to sing "Radio Ga Ga" a lot. That was about five or so years ago, before Lady Gaga took her moniker from the song. Which I've never really understood, since she and her manager likened her vocal prowess to Freddie Mercury's (ha- as if!). "Radio Ga Ga" was performed by Queen, but it was written by Roger Taylor. Out of the entire Queen catalog, I certainly wouldn't choose that song as on that epitomized Freddie's brilliant vocal range.

Oh well. I don't think Lady Bohemian Rhapsody would have gone over very well anyway. : )

Asperger's and World of Warcraft

2010-11-04T02:25:00.000-04:00

A teen with Asperger's Syndrome got an NPC named after him in the game World of Warcraft because he found an error in the game and brought it to the developers' attention at BlizzCon.
Here's the story on Yahoo.

Of course if you read the comments there are a bunch of nobodies calling the kid a loser and a nerd. Also, they evidently think getting laid makes you a valuable and important human being; and by assuming this kid hasn't "gotten laid" he is a loser.

Which makes me wonder why having sex is seen as some sort of accomplishment and status symbol. People who don't do it are considered losers or somehow less than those who do it. Honestly, if you think about it, it takes very little skill to have sex. Unless you are trying to conceive there is no purpose for it other than recreation. Yet, playing video games for recreation (which, having done both activities for recreation, I find that playing video games is more engaging and challenging most of the time) makes you a loser. Hmm. Something doesn't add up with those equations for me.

Anyway, I thought it was pretty neat that he was able to overcome his Asperger symptoms of social skill difficulties and verbal difficulties to speak in front of a large group of people and to have the guts to call people out on a mistake. : )

Lots of Things

2010-10-20T22:03:00.000-04:00

I've been having trouble finding motivation to work on things, so I haven't written on this blog in a while. The girls have done plenty of interesting, silly, frustrating, and exhausting things though.

I feel like this year has just been exhausting for me, both mentally and physically. The girls are going through puberty and don't really understand what is going on in their bodies. They are looking more like teenagers now, but they still have the cognitive abilities of younger children. It's a difficult situation for me to handle. Even though I've known this is the case for quite some time, it is still hard for me to accept.

The girls are happy much of the time, but they miss out on lots of little and big things because of their autism. I can't take them out to do fun things unless I have someone to help me, which is really frustrating. When I do take them to do things I get exhausted and stressed out. I enjoy seeing them have fun and do new things though.

This past Saturday we went to a farm. The girls got to ride a horse, collect chicken eggs, and pet and feed different animals. The farm owners had sliced apples and sweet potatoes to feed the animals. When they gave Celest an apple slice to feed the baby deer she ate it herself. She proceeded to "help" the animals eat the apples. She'd give a slice to an animal then have one for herself. Or she'd take a bite then feed it to the animal.

There was a funny turkey that would gobble if you said "gobble, gobble, gobble" to it. Celest had lots of fun with him.

By the time we were getting ready to leave Celest was getting upset and talking about emergencies. She kept saying, "Emergency please! Emergency!" She comes up with some strange requests. : )

Lotus got upset too, but I'm not sure why. She was hitting her head and crying, but by the time we walked to the car she was fine.

We went bowling the Sunday before that weekend, and the girls both had lots of fun. I am happy that I can take them out for things now, but I get depressed when I think about how difficult it is and wonder if I won't be able to do these things in the future.

I am trying to focus on what we can do now and enjoy all the little moments. Unfortunately I tend to be pessimistic and depressive, so I continuously have to redirect my thoughts.

Celest's Inadvertent PR Idea

2010-09-11T22:21:00.001-04:00

Celest has been obsessing about electric meters lately. For some reason she's decided that they are decagons. And on the topic of geometric shapes, she's been a bit obsessed with the number of sides of different polygons and their names.

However, if I don't give her the name or number she wants she just repeats her version until I agree. The other day she was going on about pentagons, and she suddenly decided that they weren't pentagons after all: they were peace-agons (I chose that spelling, but either way, piece or peace is how she pronounces it).

I was thinking that maybe she could pitch this to the government as part of a Department of Defense and military PR overhaul. The Pentagon would become the Peace-agon, the government entity dedicated to achieving peace. They don't have to change any actual procedures or policies, this would be strictly an image makeover.

Dang Life Touch!

2010-09-09T16:57:00.001-04:00

First of all, let me disclose that Life Touch, the portrait company, has always sort of irked me. At least as an adult. In my senior year of high school I paid about $300-$400 to have my senior portrait taken by a photographer. He included a yearbook photo, which fit the style and size requirements pretty much all yearbooks follow.

However, when I tried to submit it to the school I was told they wouldn't use it. Why? Because they felt it was unfair to the Life Touch photographer because he did all the other school photos from K-11, so he should be the only photographer for the seniors as well. Bull crap, I think. In the guise of not hurting the photographer's feelings they force you to have your photo taken by him. I'm sure money had nothing to do with it.

Anyway, I ended up getting my pic taken by the Life Touch photographer when I rode along with my friend. I wasn't planning on getting my picture taken, but that's when I found out about the no-outside-photographer crap. The high school year book president/coordinator/whatever-you-call-her looked me up and down, then quipped, "You're getting your picture taken in that?"

I didn't much care for this lady either, and my feelings were confirmed by her snotty attitude towards me. Incidentally, I was wearing the same John Lennon "Imagine" shirt that I had to my other senior portrait shoot.

Anyway, back to the present. I got the little Safe Smile, or whatever they're called, cards from Life Touch last year. I didn't have the money to buy the photos at the time, but the cards said the photos were accessible until December 2010. I thought I had until then to order photos. Nope. I guess that date means that law enforcement can access that photo in the event a child is abducted. To me, I would assume this means that the photo is in a digital retrieval system somewhere until December of this year.

So why can't I order a copy of the pictures then? Well, I can order Lotus' pic until next Tuesday. Celest's, however, are unavailable. As luck would have it, it is the best school picture they've ever taken of her. She is looking right at the camera and smiling. She looks really beautiful.

I'm really sad and annoyed that they won't let me order the picture. Lotus' picture came out good as well, so I'll still order it. I'm just very disappointed they won't let me order Celest's pics.

As the title says, Dang Life Touch!

Jett Travolta

2010-09-06T23:37:00.000-04:00

John Travolta finally admitted that Jett had autism. Many parents of kids with autism were pretty convinced that Jett did have autism, but John Travolta denied it. He said Jett had Kawasaki disease (a disease involving inflammation of the blood vessels and high fever), which he may also have had at some point in time.

After all of the horrible pain his family has gone through, he decided to not pursue the extortion charges against the paramedic that arrived to treat Jett and a Bahamian politician.

I guess I am happy that he finally confirmed it, as I don't think autism is anything to hide or be ashamed of. Of course, I don't think John had to "admit" to anything per se, but by repeatedly denying his son had autism it seemed that he felt the need to hide something or maybe he was in denial.

Really it's none of my business, or anyone else's for that matter, but since he is a celebrity we know more of his personal life than we need to. I just hope that his family is able to remember the good times with Jett and let their new son know about the brother he never got to meet.

Puberty or Something Else?

2010-09-05T14:42:00.000-04:00

The past few days have been really rough. I don't know if it's puberty, the change of starting back to school, or something else all together.

Lotus has bruises all over her arms and torso from her almost constant pinching. She has scabs on her hands from biting them. She has been trying to pull her hair out again as well. She just gets so angry and directs it towards herself. I don't really know why, so I can only guess that it's hormones or stress. Or something else entirely.

Celest has been having rages. She tries to attack whoever is close to her most of the time. Sometimes she gets mad over being told she can't have something while other times it isn't clear what triggers her fury.

Hopefully this phase will pass soon, but either way, it'd be nice to know what the girls are feeling. The reasons for their emotions remain a mystery to me much of the time, which is frustrating.

Super Duper vs. Mattel

2010-08-26T17:52:00.004-04:00

An awesome special needs product company has been sued by Mattel for using the words "Say" and "and Say" on some of their materials. Mattel thinks they are ripping off the See 'n' Say toy.

Aside from the fact that the products with the words in question don't make sounds and don't have a pull handle, these materials are catalog and internet sales only.

You're not going to walk into a Toys'R'Us and find a speech pathology game (to use an example) called "See It!, Say It!" and think to yourself, "Hmm, my kids just loved that See'n'Say toy. This must be made by the same company. I'll buy it because my kids had so much fun with the other toys by this company!"

Mattel already won some money from Super Duper, but now they are trying to make them destroy all of the materials that currently have the words "say" or "and say" on them and produce all new copies of the materials with new titles. This, in addition to the money Mattel is suing for, would probably bankrupt the company, I'm guessing. They aren't a huge business.

I've ordered from them several times. They have items that are great for kids with autism, speech/language delays, and other special needs. I hope they win their appeal.

Here is an email I received from the company asking for help distributing this info, so I thought I'd share it:

This message is NOT an advertisement. It concerns the Super Duper-Mattel case.

We at Super Duper ask that you consider helping us in our fight with Mattel over the use of the words SAY and AND SAY in our product titles.

If you are a member of any state or national organizations, please encourage them to contact me, Thomas Webber, and join with other organizations in support of filing an amicus brief (friend of the court brief) with the U.S. Supreme Court, asking the Court to hear Super Duper’s appeal. I will explain the rest.

My email is tomw@superduperinc.com and my cell phone is 864-884-1079.

Thank you for taking time to consider helping us.

Thomas Webber

This is a special message from Super Duper® Publications ©2010 dealing with the Mattel case.

I also copied this press release from Newswire.com:

Mattel wants Small Special Education Co Super Duper to Pay $5.46 million, and More...

Not satisfied with a $400,000 verdict against small special education company Super Duper Publications (based upon SD using the word SAY in some of its special needs product titles), Mattel has asked the trial court to make Super Duper pay $5.46 million dollars in attorneys fees and costs, plus stop Super Duper from selling these SAY products until it takes SAY out of the product names.

At trial, Mattel lost on two of the claims it brought against Super Duper (alleged unfair competition, and alleged fraud before the federal Trademark Office), and also lost on its trademark and infringement claims relating to eight (8) of Super Duper's fifteen (15) SAY titles.

Despite the mixed verdict, Mattel wants Super Duper to fully reimburse it for all of its fees and costs of the lawsuit.

In addition, Mattel has asked the trial court to permanently prohibit Super Duper from selling seven lines of its SAY products until Super Duper changes the names in the titles of these products to something that does not use the SAY word. If the court grants this request, Super Duper would have to destroy hundreds of thousands of dollars in special education product inventory, stop selling these products indefinitely, and spend hundreds of thousand of more dollars to replace these products with ones that have new titles.

Thomas Webber, co-owner of Super Duper, has previously indicated that Super Duper will appeal the $400,000 judgment to the Fourth Circuit Court of Appeals because Super Duper believes it has done nothing wrong in using the SAY word on product titles that are directed specifically to teachers and parents of autistic children and other children with speech and language delays or disabilities.

Mr. Webber also stated that should the trial court grant Mattel’s request for $5.46 in attorneys’ fees and costs, Super Duper will ask the Appeals Court to suspend collection of this sum until the appeal is heard. He further indicated that If the trial court orders that Super Duper stop selling the SAY titles involved in the judgment, he will ask the Appeals Court to allow Super Duper to continue to selling these products until the Court renders its decision on appeal.

It's 1:27 am...

2010-08-23T01:34:00.000-04:00

And Celest is up crying and singing/whining that she's a baby because I won't let her "watch please" or "watch TV now". At first I thought she was asking for a watch to wear, since she said she wanted a green watch, then a yellow watch. Finally she threw on the "TV" part so I knew what she meant. She is so tired and grouchy. I can't imagine she's going to be any happier when we have to wake up in five hours to get ready for the first day of school.

Hopefully she will be tired enough tomorrow night to fall asleep at a decent hour. About three-to-four months of seeing a psychiatrist to get a sleeping medication that will work has been unsuccessful. I was informed at my last appointment that this new prescription will be the last the doctor will try. I guess we're just supposed to deal with little-to-no sleep for months on end. It seems like modern medicine would have something that works.

The one medicine that did work was causing involuntary muscle spasms on Celest's face (tardive dyskinesia), which would become permanent if we didn't stop the medicine. It figures. Hmm...

School is starting Monday, and this year I'm sad

2010-08-21T19:10:00.000-04:00

I usually am glad for school to start back up because I have very limited time and energy to do anything other than watch the girls during the summer. By August I'm usually very ready to send them off to school. This year, for some reason, I'm sad thinking about sending them to school.

Maybe it's because the older they get, the more difficult it is to handle them and I'm worried something will happen while they are at school. Or that now that they are both in middle school, I am worried about ridicule and/or harrassment from other kids their age. Maybe I just don't want to be alone while they are at school. None of these reasons seem right, but I'm not sure why I feel sad for this year to start.

I'm becoming more reclusive because there aren't many places that I can take the girls by myself. It's frustrating and depressing to know that I have to have help to take my own kids out for the day. I can manage visiting relatives, going to one particular gas station, two different McDonalds restaurants, and a couple of the local metro parks.

However, the parks sometimes present a problem because Lotus does not want to get out of the car. So, for anywhere from one to five or more minutes I have to try to lure Lotus out of the car. I'll have Celest help me by tugging on her hand (which once in a great while works). Or I might try to entice her with the promise of gum or candy. Most often I've found that I can get in on the other side of the car, slide across the seat until I'm sitting right next to her, and then I'll use my body to push her out of the car. Then I have to hurry up and close the door and lock it so she doesn't just hop right back in.

By this point I've usually lost most of my energy and patience for the park trip. However, I stick it out for a least a few minutes so that we get some play time in.

The biggest obstacles seem to be: getting both girls out of the car and heading in the right direction; keeping both girls close to me; and having one of the girls either lay/sit on the floor/ground/parking lot and not being able to get her to stand up and walk for a while. It's frustrating. It's exhausting. Occasionally we become a spectacle and I get to hear the wisdom of my fellow humans about either my kids or my parenting ability. I usually have a strong desire to curse them out, but I don't.

Since I no longer have a gym membership, I really have no desire to go anywhere. And when I did have a membership that's pretty much where I spent all of my time outside of the home. I usually don't have disposable income, so shopping isn't an option (I'm not much of a window shopper). I don't care too much for watching movies at a cinema (and again, that costs money). I don't really have the urge to leave the house and do anything.

Maybe that's sad and/or pathetic, but, at present, it doesn't bother me. I just don't have the desire to go out. I figure that some time in the future the desire will come back on its own. If not, I think the hermetic lifestyle of dwelling in my suburban home is okay. It's not quite the woods or a cave, where I might picture an actual hermit living. So that makes it okay, right?

20th Anniversary of the Americans with Disabilities Act

2010-08-01T00:33:00.000-04:00

The following information is from the National ADA Symposium. July 26, 2010 marked the 20th anniversary of the passage of the ADA:

Become part of a nation-wide effort to collect 2,010 �Proclamations of Recommitment� to the Americans with Disabilities Act (ADA) in recognition of the 20th anniversary of the passage of the ADA. The goal of the 2010 by 2010 Campaign is to collect 2,010 �Proclamations of Recommitment� from state and local governments, schools and colleges, businesses, organizations, service providers, and advocates before the end of year. The current list of proclamation signees can be found of the 2010 by 2010 Campaign website: www.2010anniversary.org. The 2010 by 2010 Campaign has already received the support of mayors, governors, business leaders, and organizations from across the United States. Find out how your community, business, or organization can become part of the ever growing list, visit www.2010anniversary.org today. Updates can be followed on Twitter at www.twitter.com/ADA_Anniversary The 2010 by 2010 Campaign is an activity of the National ADA Symposium.

A Wild Ride

2010-07-29T15:02:00.000-04:00

A Wild Ride is a website with personal stories from parents about raising challenging kids. There are also resources and lots of good tips.

I've written for them a couple of times, and I check their site often for new stories. I thought I'd share the link for anyone interested.

Thoughts

2010-07-22T00:00:00.000-04:00

I am curious what others think about cases where parents murder their children. Obviously I began thinking about this because of the story posted below. However I've wondered about this before whenever there was a news story of a parent murdering his/her children.

There have been numerous cases of parents murdering their kids because they thought the child's disability made life unenjoyable or tragic (either the child's and/or the parent's).

I remember reading a story where a Canadian mom took her teenage daugther, who had autism, to a bridge and tried to get her to jump off. Her daughter wouldn't so the mother took her home and strangled her to death with the drawstrings on a hoodie-style shirt. She described what she was thinking during the event: she was crying and thinking something along the lines of "please, just die" over and over.

I remember reading the article vividly, because I sobbed almost uncontrollably while reading it. I was imagining someone killing the child that trusts them. Being the one (or one of a select few) who the child trusted and depended on. The girl fought her mother and tried to free herself.

It may be because I have asthma, but the thought of suffocating to death scares me intensely. I visualized one of my daughters trustingly walking off with someone who wanted to kill them. It made me so sick and depressed. I hate seeing stories like this, but I always read them anyway.

It is so tragic that some people think children and adults with disabilities don't enjoy life. Or that they are such a hindrance to their families that their death is beneficial.

Often when I tell people that my twin daugthers have autism they respond that they are "so sorry". Or that I must really have my hands full (true). Then again most people with kids have their hands full. I also hear that I'm such a great mom, I'm so strong, I'm so patient, I'm such a great person, etc. All because I have two kids with autism. And I hear a lot about how much I sacrifice for my kids, and that lots of other people wouldn't be able to do it.

Really? Being busy, having different (if not more) problems than many parents, and raising my kids isn't really anything I feel that I have a choice in. As long as I can take care of my daughters I will. I don't have anything else so pressing in my life that they are hindering me from. Really, they are the most important thing in my life. I think most parents would agree that their kids are the most important part of their lives.

Anyway, if you care to share your opinion, I made a little poll:

Mother murders her two children who had autism

2010-07-21T23:30:00.000-04:00

This is so sad. This lady obviously wasn't getting the support or help she needed. Those poor little kids.

July 21, 2010

ASSOCIATED PRESS
DALLAS -- A suburban Dallas mother accused of strangling her two young children told a 911 operator she killed them because they were autistic and she wanted "normal kids," according to a tape released Wednesday.

Irving police released the recording after Saiqa Akhter was charged with one count of capital murder in the strangling of her 5-year-old son, Zain Akhter, at the family's apartment Monday night. Police spokesman David Tull said another capital murder charge is pending in the slaying of her 2-year-old daughter, Faryaal Akhter, who died Tuesday night.

Police say the mother called 911 after attacking the children. In the recording, the woman identifies herself as Saiqa Akhter and repeatedly tells the operator she killed her two children, describing how she first tried to poison them, then later strangled them with some type of wire. At one point during the recording, the woman hangs up and the dispatcher calls her back.

"I killed them. I killed both of them," she told the operator. Later, she explained that both children were lying motionless on the bed in the master bedroom.

"They are not doing anything. They are just blue and they are not taking any breaths and ... their heart is not beating," she said.

She told the operator she initially tried to poison the children with bathroom cleaner but they refused to drink it. When that didn't work, "I used a wire on their necks," she said.

When the operator asked the woman why she attacked her children, she said, "They're both not normal, not normal. They're autistic. Both are autistic." Pressed further, she said, "I don't want my children to be like that. ... I want normal kids."

Later, the dispatcher asked the woman what she was feeling. "Nothing," she responded.

At one point, water can be heard running in the background and the dispatcher asks what the woman is doing. She told the operator she was trying to wash the smell of cleaner off of her hands. The dispatcher then told the woman to go sit on a couch in the living room and wait for police.

At the end of the recording, police can be heard arriving at the home.

Akhter has requested a court-appointed attorney but one hasn't been assigned to her case yet, an Irving jail official said Wednesday. If convicted of capital murder, Akhter could face the death penalty, though prosecutors have not said if they will seek that punishment. Otherwise, she could face life in prison without parole.

Saiqa Akhter's uncle, Wasimul Haque, told The Dallas Morning News that his niece had been depressed since moving into a new apartment in Irving. Haque said Zain had autism and a severe speech impediment but had been improving and was in speech therapy.

The children's father, Rashid Akhter, emigrated from Pakistan in the late 1990s, the newspaper reported. He married Saiqa, who also is from Pakistan, several years later, it said.

Zain was buried Wednesday in Richardson, another Dallas suburb. Faryaal's funeral is scheduled for Thursday.

Sorry for the poorly adjusted ad; to repost the article for free I had to post that ad. Unfortunately it doesn't fit very well on my blog.

The People's Court "Retard" Smackdown!

2010-07-17T17:58:00.000-04:00

I saw this episode the other day, and I love how the judge yells at the defendent for his ignorant comments. He says the plaintiff isn't "special, he's special olympics". He also said the plaintiff "played like a retard". I'm glad she had no tolerance for that kind of prejudice. It seems like most people I know don't think misusing retard and other phrases that make fun people with mental disabilities is equivalent to racial or sexual orientation slurs.

I knew I wasn't the only one!

2010-07-09T18:44:00.000-04:00

I found this shirt on Cafe Press. : )

It's been a while...

2010-06-25T21:03:00.000-04:00

It's been a bit since I last posted because school is out, and I get kind of tired just thinking about all of the things that I've wanted to write. One of our doctors suggested that I put Celest on a medication to help her "focus" on things and increase her attention span. I assumed (correctly) that this meant we start her on a dose of a drug generally prescribed for kids with ADHD. Celest can get pretty wound up at times and is very impulsive, so I thought I'd give it a go.

The medicine didn't really do anything for her, so I took her off of it. Next appointment, the doctor seemed a little peeved that I'd taken her off the med without giving it a full month. She prescribes a new med that does pretty much the same thing but that affects the brain in a slightly different way. This medicine has caused her to have at least one sobbing episode per day (I mean truly sobbing her little eyes out--she looks genuinely depressed and it hits her out of the blue so she also looks a little perplexed) and one "attack" episode per day. She has clawed my arms, pinched/clawed herself, and pinched and kicked my mom. She also stayed up until 9:30 am this morning. She was up until about 3 or 4 am the night before.

I'm thinking this medicine is not a keeper either.

The girls turned 12 this past Monday. We visited with my mom, dad, sister, her fiance, my niece (Violet), my little brother, my aunt, and one of my nephews. The girls had fun for the most part, but they can't resist the urge to run through the house and try to get things that aren't theirs. That's what they do at pretty much any house we visit though.

They played in a little wading pool with Violet and Mary. Poor Violet wanted to "swim like them" but she is just three and much smaller than the girls. The girls kept swirling around Violet like sharks circling their prey. It was kind of funny.

When we got home that night I had to go to the bathroom (I know that may be too much TMI, but it's relevant to the story). While I was in the bathroom I heard this sort of swishing sound. I thought it must be Lotus stimming with something (she likes to rub over textured objects and make repetitive sounds). When I opened the bathroom door I saw locks of hair scattered all over the floor and the counter. I let out an involuntary little shriek, which made Celest cover her ears. Her ears which I could now clearly see because she had chopped most of her hair off.

I guess since we made it to age 12 without having the childhood rite of "self-haircut" we did okay. She sort of styled herself a femme mullet. I trimmed it up the next day and it looks okay, if asymmetrical.

I think that is most of what I wanted to write about. I've got lots of other things on my mind, mainly about the girls getting older and more difficult to take out in the community. However, that subject depresses me and I don't really feel like going down that thought path at this moment.

Andrew Wakefield

2010-05-24T11:22:00.003-04:00

The most recent update on the Andrew Wakefield "controversy".

I have met Wakefield a couple of times, once at a biomedical conference and once at a rally in DC. In person he is nice and takes time to talk to all the parents who besiege him with questions and requests for autographs.

I find it hard to believe that because he paid five pounds (less than $8) to some kids for blood samples and failed to disclose a potential conflict of interest before a study was published that ipso facto his research is garbage.

Before you pull out the line that "new studies have proven there is no link between autism and vaccinations", show me the exact study. The ones from the CDC? Oh, the ones that said a link could neither be confirmed or denied and that further studies needed done. Or the ones partially researched by a psychiatrist who ran off with millions in research money? (more on that below) And the further studies just happened to say "vaccines are safe". Or the genetic studies that prove autism is strictly a genetic problem? Maybe, say, like being more susceptible to have autism, even if an environmental trigger needs to set the autism gene in motion?

Why do people who are not adversely affected by vaccines assume they are 100% risk free? "It didn't happen to me or my kids!" Ah, that proves it.

It reminds me of a conversation I had in high school with a friend. I said Jimi Hendrix was one of the most famous musicians and guitarists of all time. My friend's response: He must not be very famous. I never heard of him.

And what about this guy, Dr. Paul Thorsen? Now, he didn't pay kids pocket change for blood samples, so I can see why we would believe him. He just absconded with millions of dollars, said he'd "kill" to make his way, and, his research helped "prove" the CDC's statement that they couldn't find a connection between autism and vaccines. I wonder if he's been publicly harrassed, had his house burned down and lost his medical license? His specialty is psychiatry, so why he would be picked to head up this research is odd. Here's another story about him.
Wakefield was a pediatric gastroenterologist. He became interested in autism after treating numerous patients with autism who had odd yeast overgrowth in their intestines, symptoms of leaky gut syndrome, and live measles virus in their intestines (although the children had never had measles- only the MMR vaccine exposure to measles).
Also, if the other doctors originally involved with Wakefield were doing their due dilligence they should have found any conflicts of interest before the report was ever published in a prestigious, peer reviewed journal like The Lancet. Why did it take The Lancet so long to retract the report? Did they drop the ball on vetting the study and report or did they get flack for publishing something that might dare mess with the "herd immunity" (and annual profits for vaccine manufacturers and patent holders).
And Dr. Paul Offit, the biggest vaccine proponent around, certainly has a conflict of interest as he is a patent hold for a rotavirus vaccine. If he honestly isn't in it for the money, maybe he can donate all the profits from his book, Autism's False Prophets, to the vaccine injury compensation fund or to the CDC to study vaccine safety and efficacy. Or maybe he can join up with Amanda Peet and start up a fund to send all of us non-vaccinated or under-vaccinate "parasites" to a big island where we'll die off not only from lack of vaccination, but also because of our "faulty" genetics that cause us to be weak and susceptible to neurotoxins. Give natural selection a little nudge, if you will.

Ohio Revised Code

2010-05-20T18:12:00.004-04:00

http://www.10tv.com/live/content/health/stories/2010/05/20/story-columbus-public-health-vaccinations-schools.html?sid=102

For some reason these stories never bother to mention that exemptions exist. I'm not saying that no one should get the vaccines, but in Ohio parents have the right to refuse or delay vaccination. It's written in Ohio Revised Code, but that's been conveniently left out in every story I've seen as well as the letters I get from the school every few years. I just write a polite note with my reason for declining the vaccine for my children. So far, all of the school nurses have been very understanding and nice about it.

People in general, however, tend to get more heated. If your child had seizures, broke out in yeast rashes all over their body for months, had putrid smelling diarrhea for months, became paralyzed, or died as a direct cause of vaccination, you might hesitate to get more vaccinations or vaccinate your other children. However, parents and family of kids who had no reaction to vaccines seem to feel that our tiny percentage of kids who suffer years or a lifetime of vaccine side effect consequences are a fair trade off for "herd immunity" to be maintained.

I don't want little Suzie to get that itchy chicken pox! Oh, yeah, I forgot, almost all kids still get chicken pox even with the vaccine. Despite what you may take away from this, I'm not anti-vaccine. I'm just pro-vaccine choice. Some of us who are "unfortunate" enough to have lost out on the genetic lottery and are sensitive to vaccine side effects have a right (well, in most states) to decline or delay vaccines. What should be taking place is testing that will determine who is most likely to have a severe reaction, then we can vaccinate accordingly. Just like tesing new borns for PKU is now routine, even though it affects a minority of infants, it saves lives. Vaccine adverse effects that can be narrowed down to certain genes could save lives and prevent severely debilitating disabilities.

Whether its the diseases themselves or something used as a preservative, if we could narrow down the possibility of adverse events the vaccination rate would climb.
Instead we vilify families who choose not to vaccinate or who "put their baby at risk" while they allow his or her immune system to mature before exposing it to numerous diseases and known neurotoxins.

If lead were a preservative in vaccines would you brush it off as nothing? I doubt it, since we don't allow it in paint. But aluminum? Ah, that's a neurotoxin just like lead. Mercury, oh that's okay, so long as its "trace amounts".
Traditional medicine says not to take colloidal silver, which has "trace amounts" of silver. They quit using silver in many medicines, such as nasal drops. It is still used as an anti-microbial, and it is safe most of the time. But why do they suggest we avoid silver in foods, supplements and meds? They have a good reason: argyria.
It just turns your body, inside and out, greyish-blue. And turns your nails brittle. And other such tiny problems.

Why is it that some known neurotoxins are okay and others aren't? Maybe because most people tolerate some well, while others are bad for enough people that they aren't deemed a necessary risk.

I don't know about you, but I don't like to think that my children or family members should be a necessary risk so that others might potentially not get a disease that in most cases isn't fatal.
Oh, and don't worry, it's usually people who have compromised immune systems (i.e. bad genes) who die from things like pertussis and mumps. You know, those who are a necessary risk. Just let evolution weed us out with disease. ; )
(yes, I'm being facetitious...)

Dentist Appointment

2010-05-18T11:31:00.002-04:00

Celest's dentist appointment to fix her two upper front teeth is tomorrow at 9 am. I am not looking forward to it. I have to keep her from eating until we get there, which she won't like. Also, I have to take Lotus with me because tomorrow is a teacher day (or whatever they call it- teachers go to school but the kids don't).
Bah! I hope she doesn't get mad at me like Lotus did when she had her teeth worked on. I think she would hardly look at me and wouldn't let me sit next to her for three days afterwords.

Dentists and Psychiatrists and Allergists! Oh my!

2010-04-22T13:42:00.004-04:00

Sure, I had to do a play on the famous Wizard of Oz phrase. Why, I don't know. It just seemed right...

The girls have started seeing a psychiatrist to address their sleeping issues. In the month leading up to our first appointment they were sleeping okay two-four nights a week and very little and sporadically the other three-five nights a week. Two of the Sundays Lotus stayed awake until 5 am. Not sure what it was about Sunday that had her buzzed up so much.

Unfortunately the medicine is an antipsychotic, which comes with a myriad of potentially serious side effects. Among them: tardive dyskenesia, neuroleptic malignant syndrome, high cholesterol, weight gain and diabetes. Nothing to worry about! (yes, that was a sarcastic remark) They are on a very low dose, so the odds of them experiencing one of these side effects is relatively slim. Still, I don't like any chance of getting them. However, sleep is a necessity for health and sanity, so we came to a time where I chose to make that trade off. Too many sleepless nights were getting to us all.

They are sleeping well now. We survived the blood draw to check liver function and other stats before being on the medicine for a while (though not without a fight).
The doctor prescribed an Ativan for Lotus to try to calm her before getting a blood draw, but it didn't work. I think she looked drowsy for about ten minutes, and then she was good to go. I think both girls have a ridiculous tolerance for sleep/calm inducing drugs. Needless to say, we were unable to get a blood draw. So I had to take the girls to Children's Hospital with a friend's help. Poor Lotus had to be wrapped in a sheet and held by five people in order to get the blood (that's probably from her dad's fighting genes- Thanks Thurman!).

Celest was able to sit on my lap and only have four of us holding her. :)
Lotus had a dentist appointment and it took three people to move her from the hall to the chair, where she was strapped to a papoose board (sometimes called a mummy board). She was fine the instant she was unrestrained. Poor girl. I hate having to restrain the girls, but they need certain medical care any way we can get it done.
I have to go to an allergist next month, in the hopes that it will help with my sinus infections and just my asthma/allergy problems in general. The initial appointment will take three hours. I imagine I will be poked with many needles during this time. Hmm...

I am finally down to two chiropractic appointments a week! This is great, since it will cut down on my overall appointment schedule each week. Last week between the girls and me I had nine doctor/dentist appointments. This week I only have three. Next week will be two or three I think. I'm glad for the break. I hate dragging the girls to appointments, since at some point I generally am literally dragging or carrying them (they each weigh 105 lbs now, so it's not so easy).

Celest will have to be put under anesthetics to have her two front teeth fixed. She chipped them when she executed a perfect face-plant off of a trampoline at school.
Anyway, that is what we've been up to the past month since I've posted. Nothing much fun, but our lives are getting a little order in them. For that I am grateful.

Friends Don't Let Friends Proselytize...

2010-03-12T20:14:00.003-05:00

Actually, I don't consider what I do as proselytizing, but many people react as if I'm trying to tell them I'm right and they're wrong. Maybe subtlety is my problem.
Anyway, I've received threats from someone I went to grade school and high school with on a social networking site. I told one person I didn't like the phrase "short bus" to be used as a derogative remark. He got annoyed at my wording and snipped back at me, then I apologized. Then he apologized. Misunderstanding aside, we put it past us.
Then "coincidentally" (or so I was told), another "friend" wrote a vicious diatribe about how he hates overly sensitive people bitching about their "tard" kids. Why don't we just get over it, he asked, amid scathing remarks about these parents and his ignorant understanding of "waterheads". I assume he means babies who were born with "water on the brain" which resulted in mental retardation (by the way the new DSM completely got rid of the mental retardation diagnosis; it is going to be intellectual disability now).
Of course, that isn't the sole cause of mental retardation. He also pointed out that idiot was a clinical name for MR. Back in the day it was, along with imbecile and moron, it denoted a level of MR severity. Those words became degrading and stigmatizing, so MR was introduced. How long before the new label is common derogative slang? I will admit that intellectual disability doesn't quite have the ring that idiot or moron has; maybe we can keep picking longer phrases with less "appeal" to the lowest common denominators in society that choose to slur others with these words.
This one person isn't the inspiration for this post; far from it. He merely exemplifies the arrogant ignorance that is pervasive in this society. He probably says fag and n*gger to insult people as well. After all, according to him, "I ALWAYS win"... (ah, the mantra of the enlightened!)
Years and years of stares, pointing, and name calling have led me to my near-proselytization of friends, family, and acquaintances. Most people are nice enough to apologize or at least change the subject. The less polite go off on a tirade about how I can't tell them what to say, and "That's not what I meant anyway! I'm not making fun of people with disabilities!" I suppose the fact that making a diagnosed condition's name synonymous with stupid, dumb, ignorant, and gullible is inherently insulting is lost on these individuals.
Let's say you have diabetes. How about I assume that since you have diabetes you must be overweight, not exercise, and are lazy. Then I begin to call anyone who is lazy or overweight "diabetic". Would you take offense at the idea that I categorize all overweight and lazy people as diabetic?
How about if I assume that because you have are a single mother with a low income that you are a mooch, having kids just to get welfare and food stamps? "But I'm going to college," you protest. Well, I just think you're doing that to borrow student loans and keep the welfare coming. You're lazy and I know you'll never make anything of yourself. You're just wasting tax payer resources that people like me pay for.
I would sound like an arrogant bigot with her head up her own *ss, wouldn't I? If you think so, then maybe you see my point about using retard being offensive and demeaning. If not, you're probably a bigot.
There's hope for reforming bigots; they are generally bred out of ignorance and fear. I was quite the prejudiced, bigoted *ssh*le growing up. It took me several years to get all of the stupid prejudices I'd learned out of my head. So I'm not trying to be a holier-than-thou proselytizer. I'm just sharing my opinion.

Bigots

2010-03-05T15:50:00.003-05:00

Ah, my favorite doctrine: bigotry. You've got to love their politician-like ability to repeatedly deny facts despite overwhelming evidence that proves them wrong. And the wholehearted way they fling themselves into conversations, which invariably become arguments. The premise they use to decide who "wins" an argument is who talked the loudest, interrupted others the most, and countered facts with personal insults unrelated to the topic at hand.
Yeah, they are a breed that is hearty and mostly resist the evolutionary developments of intelligence and tact. Mostly though, I am appreciative of how they make me realize that, despite always "winning" in their minds, they are generally sad creatures who alienate themselves from others as they stomp on civility and sensibility. Unless, that is, they have an AM talk radio host job. (not that all AM hosts are bigots, just that bigots who have fans generally preach from some sort of pulpit- be it radio, political post, etc.)

Sarah Palin Revisited

2010-02-27T18:05:00.003-05:00

Old news, I know, but I haven't posted since this happened. Sarah Palin was very offended by Family Guy's Extra-Large Medium episode because a character who is a "Down Syndrome girl" says her mom was the former governor of Alaska. I'm assuming they chose to call her a "Down Syndrome girl" because the media referred to Palin's son as a "Down Syndrome baby" (which always irked the hell out of me).
Remember when Palin defended Limbaugh for his satirical use of the word "retards" to poke fun at liberals? That was funny- satire at it's best!!!
Here's an excerpt of a Huffington Post article with direct quotes from her Fox News interview:

Palin also used her platform to continue a call for the president to rid himself of his closest advisers. On Attorney General Eric Holder, she labeled his handling of captured terrorists -- "allowing them our U.S. constitutional protections when they do not deserve them" -- a firing offense. On Chief-of-Staff Rahm Emanuel, she said his comments calling liberal groups "f-ing retards" was "indecent and insensitive" and cause for his dismissal.

But the former governor went to great and sometimes awkward lengths to insist that when conservative talk show host Rush Limbaugh used the same exact term to describe the same exact group, it was simply in the role of political humorist.

"They are kooks, so I agree with Rush Limbaugh," she said, when read a quote of Limbaugh calling liberal groups "retards." "Rush Limbaugh was using satire ... . I didn't hear Rush Limbaugh calling a group of people whom he did not agree with 'f-ing retards,' and we did know that Rahm Emanuel, as has been reported, did say that. There is a big difference there."

But when Family Guy hires an actress who has Down Syndrome to play a character with Down Syndrome it is very offensive and insensitive. I understand her disliking the personal reference poking fun at her, but the satirical depiction of a girl with Down Syndrome shouldn't be objectionable based on her criteria that defended Limbaugh.

I am very sensitive when it comes to people with special needs being made fun of, and honestly, when I saw the preview for that Family Guy episode I thought that it would be offensive to me. However I didn't find it offensive. I am a fan of Family Guy, and I certainly don't find all of their jokes funny. So I am not defending them as a die hard fan.

They've had "autism" and "retard" jokes that didn't offend me either, though both of these conditions are much more personal to me than Down Syndrome. Besides all of this, we must remember that Family Guy is known for its offensive style of humor. They aren't going apologize for something that some find offensive. The makers would probably just tell you not to watch the show.

By the way, the autism joke was when Peter and Lois were role playing and Lois dressed up as Grimace. She said something about stealing hamburgers and Peter told her it was the Hamburgler that stole hamburgers. "Grimace is Ronald McDonald's autistic friend." It's kind of funny because Grimace is socially awkward and seems a little different than the other McDonald's characters. My only issue would be in putting the disability first: autistic friend rather than friend with autism. Still, I realized that I was watching Family Guy so I didn't let it bother me.

Sarah Palin and the "R" word

2010-02-09T08:50:00.005-05:00

Sarah Palin's Poor Defense of Limbaugh

The only thing I really defended Sarah Palin for was when people talked about her "Down Syndrome baby" . She has a child who happens to have Down Syndrome. He is a child, not a label. I was happy to see that she was fighting against the misproper use of the word retard. Then she had to go and defend Rush Limbaugh for his use of the word. This, just a week or so after she demanded Rohm Emanuel be fired for misusing the word. Shared ideological viewpoints shouldn't be an excuse to overlook all bad behaviors and morals. Hopefully she'll realize this and call out Rush for what he did. Of course, this might upset Rush's self-proclaimed "ditto-heads" and make them not vote for Palin in any future posts she may run for...

A day in the life...

2010-02-08T14:30:00.003-05:00

Not all of our days go smoothly, but some are a bit more of a hassle than others. My latest example would be about a month ago on a Monday. Lotus stayed up until 5 am, and she had a few messy accidents during this time. So my day began with cleaning poop off of the wall, bed linens, and child. Three times. It's like she waited for me to nod off. Or once I went to the bathroom, which gave her the perfect opportunity. I don't blame her so much, because I know she has GI issues, but still...
Then I got up at 7 am to get her and Celest ready for school. Once they were both on the bus I decided to take a nap while I had the chance.
At a little after 10 am I get a call from Celest's school. She's fallen off the trampoline and cracked her two front teeth.
Fast forward roughly half an hour: Lotus' school calls because they think she may have impetigo. She had rubbed her right cheek and her lips raw, which is a stim that usually comes in the winter time once she realizes her skin is dry.
So I have to go pick her up and schedule a doctor appointment. The appointment isn't until after Celest is home, so yippee, I get to take both girls by myself. That can be a job sometimes.
Turns out it isn't impetigo, just an open sore by her lip where she's rubbed the skin raw.
The week wasn't over yet by any means. Tuesday I had to take Celest to the dentist for her cracked teeth. A dentist visit entails a creepy device called a papoose board, which basically straps her wrists and legs to a board with thin velcro strips and a large velcro-covered body wrap that only her head and lower calves/feet peek out of. She does not like this at all. The dentist was able to put a numbing type of medicine and a coat of the rough edges. We go back in six weeks for a check up. (which Celest negotiates with me each day, "Six weeks?" "Yes." "Go to dentist." "Yes, in six weeks." Her response to that? "Five days.")
Wednesday goes by okay, but I find out that my cousin has died. We knew it was coming, but it still sucks.
My mom won't be able to help me with the girls this week either, so I have no one to provide respite.
Thursday is the first full school day that I don't have to work or pick anyone up early, so I actually get a little bit of work done.
Friday I go to work as planned. Then due to snow I have to leave early so I'll be home for the girls' buses due to a 90 minute early dismissal.
I guess that's more than a day in the life, but honestly that whole week felt like one really long, really bad day.

Life...

2010-01-08T19:20:00.002-05:00

I'm sure other parents or caregivers of children with disabilities know what it is like, but that does little to help my mood or energy levels when things get difficult.
Earlier this week the schools had a two hour delay, but I didn't realize it until after I'd woken the girls up and got them ready for school. During the extra two hours we had, Lotus decided to become obsessed with sitting on the toilet and being naked. I could not get her to keep her clothes on. Once Celest was on her bus I tried frantically to get Lotus dressed before her bus came. I tried enticing, cajoling, then yelling, threatening, and quickly devolved into a banshee-like screaming loon. After I was unable to get her to put a single piece of clothing on I had to wave her bus away. I collapsed into a sobbing mess on the floor while Lotus happily caroused about the house in the nude.
I didn't sob just because I'd lost virtually all self-control and escalated a situation into an epic struggle, but because I knew this wouldn't be the last time it'd happen. I know that each time I lose control of a situation or can't do a "normal" thing with my children it makes me wonder how I will continue to be able to care for them into adulthood. If I can't dress an eleven year old, how can I dress a twenty year old.
To make my guilt and self-pity/hatred worse, in the middle of my tirade Lotus reached up her arms around my neck and pulled me to her to give me a kiss. Despite my mean, grouchiness she kissed me. (Or, if you want to be cynical, because of my bad mood she kissed me to get me to relent?)
I am a pessimistic, depressive person by nature. I have been as far as I can remember. It doesn't mean I don't enjoy life or love my children; it merely means I look to the negative in things first. Sometimes I am happy and look for the good in things; generally when I am this way someone else hops in to deflate my optimism.
I don't really know what will happen as time goes on. I hope to keep the girls with me. Parenting a child that will never be responsible for their own care or independent is an odd situation. I feel guilt at the thought of having to have my daughters in an adult housing situation some day, but I am sure that it will eventually happen. I don't think most parents feel guilty when their adult children move out. Worried, maybe. Relieved, possibly. But guilty? Guilty that they aren't doing all they could for their kids. That they are taking the "easy" way out. I really don't like to think about it, but the older my girls get, the closer that day gets. It is something that is difficult to talk about with other parents or professionals in the developmental disabilities field. It is so clinical or detached sounding when it comes from someone who will never be in my position.
I know others have done it before me, and others will do it after me. Still, that gives me little solace.

Holidays

2009-12-28T17:09:00.002-05:00

The girls had a good Christmas, with only a few bumps. We went to my parent's house for Christmas Eve and I took the girls presents from me for them to open there as well. This was one of the very few days that I wasn't intensely miserable with neck and back pain, in addition to sinus infection problems.
Celest inherited my dad's need to have all the house lights out and then took it up a notch (her knob goes to eleven): she wants them out even if she needs them on to do something. This started a tag sort of game when my nephews came over and tried to turn the lights on. As soon as one turned on she would whine and run to turn it back off. Other than this she heard the word hospital and decided she needed to go. My sister-in-law must have been the only reasonable looking adult in the group, so Celest decided to pester her to take her to the hospital. When we finally headed home she continued to ask for the hospital and "next time" (which was the only way we could mollify her at all about her request for the hospital.
Once we got home Celest scared me half to death when I was in the bathroom by setting off the house alarm. She opened the sliding glass door to let the dogs in; only problem was that the dogs were with Mark in Michigan. I asked her what she wanted to open it for and she said, "Dogs in the grass." She seems to really have taken a liking to Brogan, the new dog. She also calls him "yellow dog".
Anyway, nothing to exciting to report.

Random Bits

2009-12-14T18:35:00.002-05:00

Celest joined Lotus as a crime-committing rabble rouser this year by pulling the fire alarm at school. No harm done, luckily, but a plan to prevent further such activities was put in place. She's very literal (she does have autism, after all); it said "pull" in big white letters, so she did...

Skipping anti-depressant meds is never a good idea. I don't do it intentionally, but I do have a habit of missing a day here and there. If I miss more than one day at a time I have a tendancy to become quite moody. I was working on a writing project the other night when I came across an article titled something like this, "Is bowel cancer fatal or can it be treated?" I burst into tears thinking about some poor person sitting in front of their computer searching for info on cancer. Had they just gotten a diagnosis of cancer? Had the doctor told them they had little to no chance of survival and they were doing their own research to see if it was true?
Then I got onto the very morbid train of thought that both my children and I will someday die. The thought of my children being hurt or dying makes me extremely depressed; it is inevitable that we'll all die someday, but thinking about it doesn't do any good. Still, it made me sob myself sick for about half an hour. I promptly went downstairs and took my Zoloft. Then I forced myself to write about something that wouldn't fill me with existential angst and morbid fear: weight loss...
Which brings me to my next random bit: I hate not being able to exercise. I haven't lifted weights in going on three weeks or more now. I'm really p*ssed about this, as I was hoping to gain muscle, not wither away the muscle I had. Also, I tend to be less depressed when I lift weights regularly. And winter makes me depressed, so I have the trifecta of depressants going for me: lack of exercise, irregular medication taking habits, and winter weather. Toss in an overall dissatisfaction with myself and my life, and you've got a recipe for deep unhappiness and self-destructive tendencies.
Having kids helps temper my emotional melodrama though; they don't leave me with the time or energy to wallow in self-pity for very long.

Cover Girl, and other fun hobbies...

2009-12-07T18:08:00.002-05:00

Celest has an obsession with makeup, particularly Cover Girl and Loreal (although honestly it doesn't really matter what brand it really is- it all falls under the category of "cover girl" or "loreal"). The best part about makeup, evidently, is trying to covertly eat it while applying it. Also, most everything goes on the lips. Doesn't matter if it's called eye shadow, applied to the lips it really adds depth and makes them "pop", if you know what I mean.
Lotus likes makeup a little, but no where nearly as much as her sister. She'll let me put on a little lipstick then she's good. Celest likes to have at least three coats of lipstick then top that off with some blush and eye shadow to the lip region. Very stylish. (anybody out there planning on getting her a Christmas gift- she can never have enough lipstick!)
My neck and shoulders are still killing me from my stupid car wreck, but at least the migraines are gone (hope I didn't jinx myself!). I'm mostly mad that I can't work out. My plan was to put on muscle from now until around late January/early February, then start dieting for a competition in March. I still might be able to do a competition in March, but I certainly won't have made the changes that I was hoping to. :( Grrr... Oh, and the chronic neck and shoulder pain isn't exactly my idea of fun.
I grew up in southern Ohio, where most people are poor and get-rich-quick-schemes are plentiful. I thought whiplash was mostly one of those schemes. I guess I'm being punished for my disbelief; I give up! Whiplash is real. And it hurts. And it sucks. Please, take it back now, I've learned my lesson! (sorry, that was mostly for the benefit of karma; just wanted everyone to know I've had my comeuppance and learned my lesson...)

The Booty is Back!

2009-11-29T13:29:00.004-05:00

I am going to share an observation I've had over the past couple of years, though I do so at the risk of sounding ignorant or racist. (remember, I did grow up in Appalachia country...)
I tend to gain wright in my hips, butt and thighs before anywhere else on my body, so proportionately they are bigger than my waist, bust, etc.
I've been doing lots of weight training and exercising the past couple of years, so I often wear form-fitting, sretchy exercise clothes (even when I'm not working out) And in this time, I've had multiple occasions when I am entering a store and I'll be passing someone who is existing the store. Usual stuff, yes. However if the person I am passing happens to be a black man, either alone or in the company of another black man, many times one of them will look at my butt and make a comment to me or about me (intending for me to hear it). Examples I've heard are: "That's nice" "Mmm hmmm" and "How are you doing?" ( the last one seems innocent enough, but the fact that it is addressed to my butt in a sultry tone changes things)
Anyway, on to the point of my story. While preparing for a figure competition, I lost 20 lbs. During the time that I was smaller (and had significantly less booty) I received no such comments (though I did notice more looks/stares from white guys). After my competition I put most of the pounds back on (though I don't take full credit for this; I have had migraines and awful neck/shoulder pain from a car accident and haven't been able to work out as much as I normally would have).
I was at Kroger yesterday, entering the building as two black men were exiting. One of them turned and watched me walk in the store. I just kept going, but I had to grab a basket for shopping. When I bent down to pick one up I saw the guy still watching me with a big smile on his face. I was embarrassed, so I just walked away quickly, laughing to myself.
Evidentally, the booty is back...

Dang, it's been a while!

2009-11-21T13:51:00.003-05:00

I've had a series of mini-complications, I'll call them, in the past couple of months. As a result, I haven't posted much. I hope to be back on a regular schedule now.
Lotus has been having a bit of a behavior/medical problem that involves lots of changes of clothes and dirty laundry. She seems to be getting better, but it isn't completely resolved yet.
Celest has a renewed obsession with makeup, in particular Cover Girl and Loreal. I have to closely supervise her though, as her favorite thing to do is eat the lipstick. Second to eating it, her next favorite thing to do is draw large, clownish expressions on her face.
I finally competed in a figure competition. I didn't place well, but I did meet my two goals: not to fall down and make a complete fool of myself and not to come in last place. Next year I hope to do better.

So-so...

2009-09-09T16:46:00.003-04:00

Things have been going okay at school so far, with just a few hitches. Lotus is still having occasional accidents, which stinks, but fortunately (for her school) she is saving the bad ones for her home time.
We've already had the flu (or a nasty cold with fever). I am still getting better and the girls still have an icky lingering cough though. Since I'm the old, feeble one I have to go to the doctor to make sure the congestion didn't turn into a sinus infection, which I have a sneaking suspicion that it has. :(

The School Year Looms

2009-08-15T19:18:00.002-04:00

I have to admit that I am guilty of getting excited when the school year starts. I can actually sort of keep the house clean with the girls gone for a few hours every day. This year I am more anxious than anything though.
I don't know who Lotus' teacher will be, but I did get a letter in the mail that I can sign up for tutoring under the No Child Left Behind Act, since the school she goes to this year meets the requirements for extra funding (i.e. they didn't get good enough standardized test scores). Since I've tutored for companies that get the majority of their clients through NCLB, I know that whatever poor tutor showed up at our house would be clueless as to what to do with her. I'm not mean enough to sign her up for that. It'd most likely be a stress and anxiety-inducing nightmare for both Lotus and the tutor.
Speaking of standardized tests, the alternative assessments given to kids with special needs are a joke. I'm sorry, but I find it a bit hard to believe that both of the girls test above average in math and reading when given a test that suits their abilities. I love my daughters and am proud of their hard work, but how can pretty much all special needs kids be doing as expected or better? I'll give you a hint: the tests they are given are based on things that they already good at. Math goal? Manipulate 3D geometric objects. Task that tested this? Sorting recyclables. Reading? Recognizing own name in print. These a re goals from a couple of years ago, but still they are setting the bar pretty low.
I don't blame the teachers or the schools for this silliness however. They are using a state-supplied system to test our kids. If regular ed teachers were allowed to pick the tests for typical classrooms and told that their performance would be based on how the kids did, I imagine that they would pick things that they knew the kids to be proficient in.
I think it would be best if the girls didn't have to do standardized testing at all, as this would free up about a week of wasted time when their teachers have to run around getting materials, pictures, video, etc. of the tasks that the kids do for the alternate assessment.
Anyway, that was a bit of a side rant.
I just wish I didn't have a feeling of dread hovering over me as the start of school approaches this time, which is only nine days away...

School Year Anxiety

2009-08-08T20:00:00.002-04:00

Usually I am happy to send my kids back to school at the end of summer break. Celest has actually been asking for the "yellow school bus please". Unfortunatley, this year I am not looking forward to it.
The program that the girls have been in since they were three years old, called STACK, is no longer being offered in our district. Instead the district has decided to do a copycat of the program. However, I don't think it's going to be a smooth transition. Especially since the classroom that Lotus went to last year wasn't able to "deal with that kind of behavior". This year, magically they are going to be able to. Of course, I'm not supposed to know that our district's special education supervisor made that comment. (The older I get, the more I hope the adage "you reap what you sow" is true!)
Anyway, I'm trying to get the girls into a private school, but it has a wait list. :(

Weezer and the primary colors

2009-07-25T22:07:00.001-04:00

D'oh! I am editing this to add that I am, apparently wrong (sort of)!
Evidently, the primary subtractive colors are red, green, and blue. The additive primary colors are yellow, magenta, and cyan, which basically is yellow, red, and blue. So, technically, both Weezer and I are correct!

I read this article today: Weezer: in the ‘Red’ zone Metromix Phoenix:
I found the following part pretty funny. (bold added by me)
"You have the “Blue Album,” the “Green Album” and the “Red Album.” Do the colors signify anything?
That shade of blue was always my favorite color growing up; I painted my room that color when I was a kid. There was a Beach Boys cover that had that color in the background, and I thought it was so beautiful. On the “Green Album,” we printed out a bunch of different colors and put them in CD cases and brought them to the store and set them in the racks and then stood about ten or 15 paces away and just looked to see which color popped out the loudest—and it was green. For the “Red Album,” there was only one primary color left."

So the primary colors are blue, red, and green? I know I went to school in the Appalachia region, but we did have the primary and secondary colors right: blue, red, and yellow can be combined to make purple, orange, and green.

I still like Weezer, what with their looking like Buddy Holly and being bare-chested due to their sweaters getting unraveled and all. What's not to love?

Comedy and "retards"

2009-07-25T21:43:00.002-04:00

For some reason comedians seem to find "retard" jokes almost as irristable as dropping the f-bomb. I like to think I'm a fairly open minded person, but I can't get my mind around why it is funny to make fun of people who have the IQ of a child for life. Through no fault of their own, people who are mentally retarded function on the level of a toddler up to the level of an elementary school student for life. Still, they learn skills and grow wiser with experience as they age, as do (most) adults.

I went to a comedy club last night, and while I put my tolerance level for offensiveness up a few notches, I still found myself getting pissed at some jokes. I believe I counted the word retard used incorrectly about five or six times. Just to make things more up to date, one comedian even threw in autistic. Then a dip-shit in the audience brought up "the short bus". This one really pisses me off. Obviously if you are making fun of people who ride "the short bus" you are making fun of school children with special needs. Oh, the hilarity! The *great part* was that most of the audience cracked up.

One comedian, the same one that said retard most of the times and said autistic, made a point of talking about how people use the word "gay" inappropriately. He made reference to someone saying that they had to work tomorrow, and that it "was so gay"; he responded with, "What, do you suck d**k for a living?" Way to stand up for gay rights! Now, on to making fun of people with mental retardation and autism! They can fend for themselves!

Grrr... Sorry for being a politically correct mom sometimes, but really, the jokes I heard at the expense of people who have autism or are mentally retarded just weren't funny to me. Maybe for the same reason that the comedian doesn't appreciate people saying things are gay... (which I don't either, by the way)

Real Age

2009-07-10T22:16:00.002-04:00

I saw a link for the Real Age test, so I decided to take it. I'm 29.7 by calendar and 27.9 by Real Age's test. To lower my real age even more, it suggested that I stop worrying and get more support from friends and relatives.
If you know me at all, you know that worrying is an unconscious and innate hobby of mine. I think most parents, especially those of children with special needs, are probably worriers (so close to "warrior", yet so completely different!).
This made me think about new things that I've been worrying about lately:

Puberty- I found some armpit hairs on Lotus. Aaaahhh! Every new sign freaks me out because I am waiting for The Big One...
Money- Because I never seem to have enough of it to cover bills and groceries. It's generally spent before I get it.
Long-term plans- I think I've been practicing for my mid-life crisis since I was around 21 (when the girls were showing signs of autism and then finally diagnosed). I am getting old enough that I can have the real one pretty soon. Life expectancy for white women in the U.S. is 80.5 years. (By the way, evidently life is both racist and sexist: black women are averaging 76.1, but they still beat white men, who come in at 75.4. Black men get the short stick on this one, averaging only 69.2...)
Sense of failure- I just feel like I never do good enough, try hard enough, or just, well enough. Maybe that's tied into working up to the penultimate mid-life crisis. Look out for a tattoo of Hello Kitty wearing a puzzle-piece themed kimono right above my booty. That'll be the move that makes it official. Maybe I'll get all wild and get my ears pierced (a joke- I got my first piercing this year: my belly button. It'll round out my stripper look with that above the butt tatto0! Then I'll just throw on my 7" clear lucite heels with the embroidered cherries on them and I'll be ready to go. Now if I only knew how to dance...)
Worrying about worrying too much- Not a joke...

OCD and Irony

2009-07-04T13:28:00.002-04:00

I have had mild (moderate?) obsessive compulsive disorder, or OCD, since I was a child. Back then, I was just "weird" though. :) Most people have some OCD-like tendencies, so they can relate.

However, one of the many little OCD habits I had was to "seal" things, sort of like a spiritual or mental thing. An example is after I had my daughters, I'd never felt such a deep and intense love for anyone. It was different than that for other relatives and friends. I had horrible fears that something would happen to my girls, so I developed a habit whenever I would drive to college (which was about 100 miles from home). Every time I went past a new county sign, or rather before I passed it, I would think to myself, "Celest, Lotus, me, all of us together, forever." I like odd numbers, so I broke up my thought into five segments.

I've thought several times over the years that maybe it is some sick sense of irony that I will probably be with the girls forever: literally for the rest of my life at least. They will most likely never live independantly. For as long as I am able I will have them with me. I know that in the future it may become inevitable that I have them live at an assisted residence, but I hate the thought.

I'm agnostic, so the possibility that some ethereal being heard my thoughts and said, "Hmm, be careful what you wish for..." isn't totally out of the realm of possibility... Sort of like the monkey's paw wishes. I don't honestly think this is the truth, but it is one of the bizarre thoughts I've had over time as I try to make sense of life.

Done dog

2009-06-15T20:10:00.002-04:00

This is a picture Celest drew back around early April. One of our therapists had just left after being with us for over two years, and Celest was just starting to miss her. At first I wasn't sure what "done dog" meant, so I said it out loud and Celest was quick to correct me. "Dionne. Dog."

Dionne had brought a little shih-tzu to our house with her several times so Celest drew him with her.

It was so cute.

It was one of, if not the first time, that Celest had expressed missing someone in such a concrete way. She also cried and asked for Dionne several times in early to mid April. I'm not happy that she was sad, but I am happy that she was able to express complex emotions successfully.

She's a little old for that...

2009-06-02T15:54:00.002-04:00

Taking kids with autism into public places isn't exactly a fun or uplifting experience most of the time. People always seem to come through with stares, comments, or gestures that make me wish I could live in a secluded area and never venture out.

In general, I like people. I love talking to people, hearing different perspectives and experiences, and just interacting. However, I don't like being made a spectacle of or receiving self-righteous anecdotes about how "if that were my child...".

Sometimes I feel energetic, optimistic, and full of life. On these days I can let even kind of nasty comments roll off me. Other days, I feel like I'm on the edge, and all it will take to push me over is a mean look, a thoughtless comment, or a depressing thought. These are the days I generally don't take the girls anywhere, simply because I don't want to deal with the stress of a trip outside of the house.

Really, it is usually the small things that make my kids happy: car rides, snacks, water, TV, etc. Still, on some days it gets to be a bit much. A kind gesture or comment can help turn around a crappy day, while a crappy comment or gesture can ruin an otherwise good day.

I'm not going for sympathy; rather, I am sharing how by just being a little more open-minded or tolerant you can really impact another person's life for the better.

The other day I took Celest to run some errands with me after I picked her up from school. I figured since I just had her that it would be relatively easy to do this since she is more likely to walk in and out of buildings without lying down on the sidewalk.

Anyway, we went inside, returned some items, and then I went to check my account to make sure I didn't have any overdue items or fees. There is a copy machine next to the computer I went to use, and there was a lady making copies. Before I could stop her, Celest reached out and hit the big, green start button. I apologized and we sat down at the computer next to the copier. The lady continued to look at us, so I met and held her gaze. She kind of grumbled, "Isn't she a little old for that?" Automatically she implied that my child was a brat, I was an inadequate parent, and shouldn't I be ashamed of myself for allowing this to be?

I smiled at her, and said, "She has autism and is mentally retarded. Whenever she sees a button she wants to push it. I'm sorry."

Her expression softened, and she said, "That's okay. No harm done."

I'm glad that she was okay with things, even though I don't feel like I should have to explain myself. I'm really glad that I didn't start crying my eyes out at her comment, because I had been having sporadic crying fits for the preceding week. That would have been a bit awkward for both of us.

Anyway, I wish that people would just bite their tongues when it comes to parenting. Sure, you can bitch to your family or friends to vent about something that happened or someone's kids, but do you really need to criticize someone's child and parenting skills if no one is in danger?

I try not to let things like this get me down, but the stress of parenting children with special needs wears my patience and attitude thin sometimes. If you see a frazzled mom with a "bratty" kid, just don't say anything at all unless you are going to offer her help (if she appears to need it). You never know, it could be me, and you'll see me writing about it... ;) When in doubt, just be nice!

In the parking lot

2009-05-15T09:47:00.002-04:00

I went to pick up the girls from school yesterday, as usual. When I got to Lotus' school, Celest told me she had to poop, and I told her to wait until we got home, which would only be about seven or eight minutes.

We got Lotus and were headed back to the car, when Lotus decided she was going to run away from me. She ran from the car, through a big puddle of water, and then laid down in the front lawn of the school. Celest was in the car waiting.

I struggled around with Lotus, tried enticing her with a piece of gum, and then resorted to trying to physically make her get up. She was able to roll around away from me though. I stood up, exasperated, and looked over toward the car to see what Celest was doing.

I got an eye full. There, out of the open back door of my car, was a pale bum sticking out. She had pulled down her pants, and I suppose, she was planning on taking a poop in the parking lot. I yelled at her to pull up her pants and come help me get Lotus to the car. She pulled up her pants and she got out of the car, but then she decided to pick dandelions and play instead of helping me.

Eventually she came and tried to help me get Lotus to the car, but to no avail. Finally Lotus' teacher and two aides came out of the school and saw us. They were able to get Lotus to the car so we could go home. At least they didn't see Celest with her naked butt hanging out of the car...

Recooperating from Spring Break

2009-04-28T19:08:00.003-04:00

Dang, the girls have been back in school for a week and two days, and I feel like we are all just getting back in the groove of things after spring break. Amazingly, we haven't overslept and missed the school bus. Usually after a break from school we miss the bus at least once the following week.

That, and I seem to have fallen back into the habit of playing Everquest II at night while waiting for the girls to fall asleep. I try to outlast them so I can take a bath without worrying about what they are up to or trying to keep them from climbing in the tub with me.

Celest is all for me playing Everquest; she calls it orange. She started calling it that about four years ago when I first began playing. I'm not sure what caused her to call it that, as there isn't anything overwhelmingly orange on the game or intro. Anyway, when we head to my bedroom she'll say, "Computer. Play orange please."

Then, once I'm fully imersed in my nerd persona (which is a necromancer, if you're interested), she'll sneak out of the room and get into things. It can be anywhere from a few seconds to a few minutes before I realize that she's gone. Very sneaky girl. Lotus usually takes advantage of the situation and sneaks out of the room as well.

The Grab-and-Run Girl is Back

2009-04-06T12:54:00.003-04:00

For a while when Celest was younger she went through the phase of grabbing something and running away like she was a fugitive on Cops. This is a little more "age appropriate" for a three-to four-year-old. Now that she's almost eleven it's a bit less forgiveable. And a lot more annoying. Mainly because now she is faster and stronger, so it's harder for me to get things away from her. Generally she wants to either draw all over something that she shouldn't or eat and drink things that aren't hers.

I'm rethinking her career options: before I was leaning towards artist because of her interests and her pretentiousness (just kidding!), but now I'm thinking maybe competitive eating. Sure, it's gross and maybe unhealthy, but it could just be a side income. Never hurts to have multiple streams of income!

Yes, that is my bedroom wall that she has confinscated as her personal canvas. At some point I gave up on scrubbing the images off and instead began tracing the good ones onto paper.

All better!

2009-03-31T22:21:00.002-04:00

The girls and I are finally over the nasty flu and stomach virus that we had for the last three weeks or so. Yay! Hopefully we will stay well for quite some time.

Celest is still on a doodling rampage, drawing on any and every available surface. She even drew on the toilet paper holder. She enjoys drawing on paper towels too. The other morning I went to the kitchen and found a big smiley-faced guy on a piece of paper towel with the word "HAPPY" next to him. Maybe that was for my benefit, so I wouldn't ask her what the picture was. That ticks her off sometimes.

Lotus has been doing better with walking without slumping to the ground, which is great. She still does it a little though.

I've been able to take the girls grocery shopping with me the last two weeks which is also great. I was getting tired of not being able to take them to the store or anywhere else for that matter.

Since I've been gone...

2009-03-17T21:58:00.002-04:00

I haven't posted in a while due to a slew of personal *junk* going on in my life. Here's a rundown of the fun I've been having:

* I stayed up until about 5 am working and going to the bathroom (which, with IBS, can be a time consuming thing) on a Wednesday morning. I had to get back up at 7 something to put Celest on the school bus, then put Lotus on her bus at 8:40-ish. After that I decided that I was going to take a nap before I had to leave for work in the afternoon (I had more work to do at home for the job and I had to both tutor and go to a Spinning class). Just as I was nodding off, maybe around 9:30 am, I heard someone beating on my front door. And I mean "beating", not knocking. I was really tired, so I thought hell I'm not answering it. The "knocking" stopped for about half a minute then started back up. I got a bit scared then, as I've never had anyone knock on my door like that.

I got out of bed and peeked out of my window. There wasn't a car parked in my driveway, nor was there one parked alongside the road or even directly across the road from my house. I went back to bed. Then the beating on the door started back up. It was on/off for 5-10 minutes. I didn't really have a good sensee of the time since I was sleepy, but it was definitely in the several minute range. My home phone and cell phone continued to ring like crazy as well. I didn't recognize the number, so I didn't answer it. I figured if it was important they'd leave a message. Well, I finally fell asleep, and I didn't wake up until about 2 pm.

I saw that my mom had tried to call, so I called her back. She said that a man from the Attorney General's office had called my brother's house (the guy thought it was my dad he had called, since they have the same name). My brother isn't one to be pushed around, and I surmise that they didn't have a very cordial conversation. Anyway, without even knowing exactly who he was talking to, the guy said that he was a special investigator and that Laura was being investigated for Medicaid fraud.

My brother asked how he got his phone number, since it is listed in his wife's name. My brother specifically asked if he obtained the number from my phone records and the guy said that he did. I checked my voicemail messages after I got off of the phone with my mom; the guy had left 2 or 3 messages on my cell phone and 2 or 3 on my home phone. That, in addition to beating on my door (and I later discovered, thanks to the snow we had just gotten, that he walked around the side of my house to see if he could see me through my windows!).

When I called him he immediately asked if he could call me back in two minutes. He did, but my phone didn't pick up correctly for some reason, so I called him back. He then asked me to call him back on his office phone. He said that he needed to talk to me about the Medicaid services that my daughters receive. I asked if he needed to see me at my house or if I should come to his office; that's when he said that he had already been at my house but I "obviously" wasn't home.

I told him that I was home, but that I had worked all night so I was sleeping. I assume that this was so he could record our conversation. Still, all he said was that it was regarding the services my daughters receive. I can only assume that it's something bad, because I've never known a government agency to call me up just to see if I'm satisfied with how they are providing services.

The investigator also called my service coordinator through MRDD (who, by the way, called my therapists. He called my therapists and tried to get one of them to meet with him to talk (why he couldn't do this over the phone I don't know). He also threatened to subpoena one of them (this because she was at work and told him that she'd call him back later when she had the time to talk). He also told one of the therapists that it wasn't illegal for her to disclose that he had contacted her, but he'd really appreciate it if she didn't tell me that he had. So, evidentally, it is okay for everyone but me to know that I am under investigation.

Flash forward two months: the case is closed and I was found to have done nothing wrong. I had a face to face interview with the investigator the week after we had our phone call. I was told that I had a complaint filed against me by someone in January of last year. I have a couple ideas of who might have done it. If they would happen to read this I'd like them to remember one thing: karma can be a real b*tch. At least, I fervently hope so! I think that in the past ten years I've paid off anything bad that I've done. (maybe it's just my liberal sense of entitlement, but I really hope some good things start heading my way!)

I was also told that my house was under surveillance for the past year and that they'd be checking my provider time sheets to see if they matched up with the comings and goings of my daughters' therapists. I really think this was a scare tactic because I really don't think the government would invest that kind of time and money into a small case like mine.

Oh, and for the "funny" file: the Attorney General who was in office when my case supposedly began had very recently resigned over sexual harrassment and ethics charges, as well as several others in the top personnel of the office. The business card I was given didn't even have the new AG's info. on it because the changes had been so recent.

* I have been training for a figure competition, but due to training and dieting mishaps I've had to push that back. I was pretty bummed at first, but I'm continuing my training and diet now with a new goal date: May 30! The real kicker is that for the two weeks that I was unable to workout due to the flu I gained about five pounds. :( I can't see my six pack anymore (well, I can see the outer line, but not the inner divisions or the slight definition of my obliques that were beginning to peak through!). I'm not too thrilled about this, but what I am going to do? Other than start back up with training and strict dieting, which I have.

*I've been sick almost non-stop for the past two months. Stress has caused my IBS to be really bad. It's hard to get anything done when you spend a quarter of your day in the bathroom and another quarter lying around being miserable and unable to concentrate on anything other than your cramping stomach and moody pre-teen children (see puberty post!). Right as my stomach was starting to become more managable I got a nasty flu. First Lotus got sick with an earache and fever, then I started getting achy and congested, and finally Celest started feeling sick. We all ended up with a fever for at least four days. The girls both missed five days of school. I missed work for a week and ended up staying pretty sick for eleven days. :( I am still fighting off a sinus infection that resulted from the flu congestion. My left sinus is prone to getting infected, and I'm hoping that over the counter meds can keep the inflammation down so that it can clear up on its own. If not I'll have to take antibiotics, and that'll get my IBS all funked up again. Argh!

* Celest scratched her eye, I think with a pointer that is used for group reading (a plastic stick with a hand / pointy index finger on the end), on a Sunday evening. Her eye was a little red when I sent her to school on Monday. School starts around 9:00 in the morning, and at 9:06 I received a call from the school nurse. She told me that Celest was acting as if she was in great pain. Also she didn't think that Celest was going to be able to focus on her work. I talked her into waiting to see how Celest would do before I went to pick her up. She agreed after some silence. In an hour I received a call that I should pick her up as she was rubbing her eye continuously, seemed in pain, and wasn't able to concentrate on her work.

When I went to the classroom to pick her up, Celest was happily working with her teacher, not touching her eye. Her teacher said that she hadn't personally seen her touch or bother her eye at all. Hmm... Why wasn't I surprised?

The trip to the doctor was the usual frustrating experience. You'd think that a doctor we'd seen before at a practice where we've been seen for the past six years would remember that my daughter has autism. Well, you'd have thought wrong.

The doctor approached her with his light to look at her eye and talked to her as he would any child. My child responded in her typical fashion; she hid her eye and tried to get away from him. He turned to me and said, "She has a problem?" I was thinking, yeah, apparently you are her problem, but I said, "Yes, she has autism." His response was, "Well, you need to tell me these things." I played it off with a light comment, but I was thinking that the chart he had in his hands just a minute before could have apprised him of this fact if his memory didn't.

I held Celest's arms so that she couldn't swat away the light, but she decided to try to kick his seat, which had wheels, away. He went flying backwards and I thought she'd kicked him or the seat really hard. Turns out he was just trying to protect his man-bits in a theatrical move that belied his years.

He then told Celest that if she didn't let him look at her eye he would just send up to the opthamologist. Passing the buck or idly threatening? I don't know, but I was thinking that he maybe should've been worried about someone else harming his delicate spot because I was getting pretty tired of things.

I should probably mention at this point something that happened while we were waiting to be seen: Celest had an accident and soiled her panties (no, it wasn't pee) a little. I had to take her to the bathroom and clean her up. I didn't have spare undies so she had to go commando until we got home. She wasn't too happy about this, so by the time the doctor showed up she was already getting a "mood" worked up.

Anyway, we got a prescription for antibiotic drops and her eye cleared up within two days. Maybe it would've anyway, but who knows?

Anyway, that's the abbreviated version of the fun the girls and I have been up to. Yes, there's been plenty more that I don't feel like talking about. Grrr...

TV Monster

2009-03-17T21:49:00.003-04:00

This picture is of a "tv monster". It is also a girl. In addition to the other symptoms of puberty I talked about earlier, Celest seems to have had a huge surge in creativity and her desire to express it. The past weekend she's been on an art binge: she's drawn literally hundreds of pictures. Mostly they are animals, monsters, light bulbs, food, cowboys, and pop (Pepsi and "red" pop). She sometimes labels her pictures, and I have to be delicate when I ask her what she's written if it isn't spelled right. She gets a bit offended when I ask her what something says (or what it is for that matter).

She spelled Pepsi something like this: peecisee. That's not exactly it, but I didn't keep that drawing so I can't check. I feel bad getting rid of her work, but I already have a box full of the girls' older art projects from school and home in addition to several folders and piles of newer works.

Lotus isn't much interested in drawing yet, but it is an emerging interest. She mainly likes to obliterate whatever is on a page by drawing thick lines over its entire surface. Sometimes she will draw little shapes though. She hates fine motor work, so she tires quickly of controlling the writing instrument in an intentional pattern (yes, she hates writing as well!).

Anyway, enjoy the TV Monster girl with her anarchy symbol for a nose!

The Three P's of Puberty: Pimples, Pubes, and PMS

2009-03-17T21:33:00.002-04:00

I've been treated to some of the initial signs of puberty over the last few years, but they seem to be picking up in frequency and quantity lately. I can't say that I'm too excited about this. The girls are going to turn eleven this summer; I was desperately hoping that they'd be "late bloomers" and maybe not start these things until around sixteen or so. No such luck.

The first two P's are pretty self explanatory, but PMS is a little more complicated. I always thought of the more concrete symptoms, like cramping, bloating, extra pimples, and grouchiness. Watching one of my daughters, who seems to be having a harder time with things, I started remembering all of the other symptoms: crying for little or no reason, getting really ticked off for little or no reason, lying around not wanting to move or do anything, and craving salty snack foods.

Since I share lots of personal info about my daughters, I'll share some about me too (I'm not much for secrets- my memory isn't that good and I just don't see the point in keeping secrets about some things...). I have been on depo provera for about ten years now, and, as a side effect, I haven't had a period in about nine years. I only have PMS every three months when it is about time for me to get my next injection. Even then the symptoms are much milder than they were when I was having a regular cycle.

So, I'm relearning and remembering the less palatable symptoms as I watch my daughters struggle with them. It's hard enough to explain to a ten year old what is going on in her body and the changes she'll have to adapt to for the next forty-plus years; when those ten-year-olds have autism (one is non-verbal) and have difficulty with abstract concepts it is even more challenging.

2009-01-15T15:04:00.004-05:00

antagonistic
really isn't the best way,
is it? i don't know...

Aw, swollen ankles!
Achy lower back, come on
Stupid PMS!

Yes, you read correctly! The dreaded poetic blog post. Never thought I'd do it, but special circumstances require special measures. I know, I know, haiku! Of all formats, I think the only two worse choices I could have made to really solidify my amateur/hackneyed poet status would be a forced rhyme poem or a free verse poem (stream of consciousness style).

Anyway, my fantasies of this being a great year (not just any great year; I wanted this to be the super-dupe flumox deluxe-style great year!) have already been dashed. It was round about the seventh day that I found this out. Not to be all mysterious-like, but I don't really want to discuss it just yet.

So instead, I'll be thankful that last year is behind me. For instance, round-about this time last year I was fighting to save a six-plus year relationship. When that failed I had to deal with sleep deprivation due to the girls' near insomniac sleeping patterns. Oh yeah, and Celest had developed the maddening hobby of pooping on the carpet, then making sure it got smooshed into the fibers; that ensured that I'd have to break out the carpet shampooer so she'd have the time to concurrently create messes/havoc. Wee!

For now the girls are content merely having a couple of bad sleeping days a week, climbing on things, having random hysterical laughing/crying/angry fits, and being your "typical" 10 & 1/2 year-olds with autism (hmm, that may be an oxymoron...).

Something Happy...

2008-11-21T19:58:00.007-05:00

Some pictures of the girls and me from this summer. Celest is in the top photo and Lotus is in the bottom picture. :)

This Year’s People Who Suck

2008-11-19T14:13:00.003-05:00

I know the year isn’t over yet, so there’s still time for someone to do or say something really stupid (with regards to autism). However, I thought I’d take a few moments to highlight some of this year’s People Who Suck. I thought about labeling them a**holes, but I thought that wasn’t really accurate…

Amanda Peet- I’ve already mentioned her, but I can’t have my list complete without mentioning her again. Here’s her insight on not vaccinating your children: "Frankly, I feel that parents who don't vaccinate their children are parasites." Yep, we’re mooching off of your immunity. Never mind that I am fully vaccinated. Never mind that my children had most of their vaccines (which, incidentally, sparked yeast growth over their torsos, private areas, and face; gave them diarrhea-like bowel movements for about three months; and coincidence or not, coincided with their regression in language and behavior).

Thanks for passing your judgment. Oh, but she did “do her homework”. More from her Cookie interview, where she tells us about how speaking to Dr. Paul Offit cleared up her concerns: "Once we had spoken, I was shocked at the amount of misinformation floating around, particularly in Hollywood," says Peet, who quickly boned up on the hot-button controversies surrounding the topic, including the unproven link between certain vaccines and autism; the safety of preservatives like mercury-based thimerosal; and the fear that the relatively high number of shots kids receive today can overwhelm young immune systems. Her conclusion? Well, not only is Frankie up-to-date on her vaccines (with no staggering), but her mom will soon appear in public-service announcements for Every Child by Two. "I buy 99 percent organic food for Frankie, and I don't like to give her medicine or put sunscreen on her," says Peet. "But now that I've done my research, vaccines do not concern me."

I put unproven in italics because the link is just that, “unproven”. Meaning it hasn’t definitively been proven to be or to not be a cause of some cases of autism. Then again, it’s more convenient to see only the side that proves your point…

Dennis Leary- In his book, Why We Suck, he has a chapter titled autism schmautism (not sure of his spelling on the second word). He tried to defend his paragraph that was “taken out of context” by media on the Daily Show, but he still comes across as a misinformed jackass. He contends that there is a big problem of incompetent parents getting their children labeled with “low level” diagnoses of autism and Asperger’s Syndrome so that they can have an excuse for having bratty, misbehaving children. He said that he has known a person with autism for a long time and that he understands that it is a serious condition, but that it’s the families who did a crappy job raising their kids and are looking for excuses, like unwarranted autismdiagnoses, that he is trying to bring attention to.

If he really wanted to do any kind of service for parents or people with autismhe could’ve left this chapter out of his book or written about how autismis a prevalent condition that is poorly understood and underfunded in research. No, he’d rather tackle an issue that he says is very prevalent: bad parents who shop for diagnoses that make them feel better about the poor job they do raising their children.

Where he got this information about fake diagnoses he didn’t really elaborate on. Maybe it’s one of those things you just learn when you are wealthy and famous.
Michael Weiner (aka Michael Savage)- In July Michael Savage spoke about autismas if he had some clue as to what it is. Here is his definition of autism, “You know what autismis? I'll tell you what autismis… In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autismis."

He also said that if we just told our kids to suck it up and act like a man that they’d be fine. I’ve been keeping up on “cures” for autismfor some time now, so I decided to give his theory a try. One night when Lotus was lying in bed trying to pull her hair out by the roots (which she does to fight off sleepiness), I told her to quit being a putz and act like a man. It didn’t work. I guess I must have one of the 1% of children with “real” autism.

Dr. Paul Offit- You’d think that he got paid to reassure the public that vaccinations are safe, very, very safe. Oh, wait a minute. He sort of does! Let’s look at Dr. Offit’s credentials (underlining mine):

Paul A. Offit, MD is the Chief of the Division of Infectious Diseases and the Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Dr. Offit is also the Maurice R. Hilleman Professor of Vaccinology, and a Professor of Pediatrics at the University of Pennsylvania School of Medicine. He is a recipient of many awards including the J. Edmund Bradley Prize for Excellence in Pediatrics bestowed by the University of Maryland Medical School, the Young Investigator Award in Vaccine Development from the Infectious Disease Society of America, and a Research Career Development Award from the National Institutes of Health.Dr. Paul A. Offit has published more than 130 papers in medical and scientific journals in the areas of rotavirus-specific immune responses and vaccine safety. He is also the co-inventor of the rotavirus vaccine, RotaTeq, recently recommended for universal use in infants by the CDC; for this achievement Dr. Offit received the Gold Medal from the Children’s Hospital of Philadelphia and the Jonas Salk Medal from the Association for Professionals in Infection Control and Epidemiology.

Dr Paul Offit was also a member of the Advisory Committee on Immunization Practices to the Centers for Disease Control and Prevention and is the author of four books titled Vaccines: What You Should Know (Wiley, 2003, 3rd Edition), Breaking the Antibiotic Habit (Wiley, 1999), The Cutter Incident: How America’s First Polio Vaccine Led to Today’s Growing Vaccine Crisis (Yale University Press, 2005), and, most recently, Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases (HarperCollins, 2007). A fifth book titled Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure will be published by Columbia University Press in the fall of 2008.

Hmm, do you see any sort of connection? Like, maybe why he is such a fierce defender of vaccines is because his whole career and livelihood depend on the sale of vaccines? And do you sense just a hint of animosity towards those who disagree with him? I mean, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure”. That title is more than a little offensive to me. How about : Bad Science, Risky Medicine, and the Search for Prophets: An Industry More Concerned with Money than the Well Being of Children? I think that would be a good title for an investigative journalism piece that delves into the world of vaccine creation and pharmaceutical companies.

Take for instance, just this one example of the due diligence of pharamaceutical companies. This pertains to the “safe” preservative thimerosal, you remember, the one Offit convinced Amanda Peet is perfectly safe. Thimerosal’s safety was tested on adults with meningitis. The following information is from a lawyer’s investigation into thimerosal for a case:

In 1928, Dr. G.H.A. Clowes, Director of Research of the Eli Lilly Co., assigned Lilly scientists H.M. Powell and W.A. Jamieson the task of completing animal toxicity studies in anticipation of plans to sell the product for human use as an antiseptic and/or antibacterial agent. Exhibit 4 (Exhibit ELI-392FF). Powell and Jamieson performed a series of short-term experiments on animals to ascertain what acute and immediate toxicity might be observed. They made no effort to determine what injuries would results from longer term or lower level exposures.
On July 24, 1930, Powell and Jamieson submitted their results for publication to The American Journal of Hygiene, and their article was published in January 1931. Id. In one section of the published paper, Powell and Jamieson noted:

Toxicity in man. Merthiolate has been injected intravenously into 22 persons in doses up to 50 cubic centimeters of 1% solution. . . The toleration of such intravenous doses indicates a very low order of toxicity of merthiolate for man. This information has been supplied through the kindness of Dr. K.C. Smithburn of Indianapolis who has had occasion to use merthiolate in a clinical way. Dr. Smithburn stated in these cases ‘beneficial effect of the drug was not definitely proven. It did not appear, however, to have any deleterious action when used in rather large doses intravenously when all the drug entered the vein.
Nevermind the fact that these patients would all later die from meningitis; whoops, no source of information on long term effects!

After this “study” was completed Eli Lilly went on to tout thimerosal, or merthiolate as it was then called, as being a safe, non-toxic substance. However, ten years later, the military decided it didn’t agree:

v. The 1940’s: Additional Recognition of Potential Hazards, Especially for Sensitive Persons
In 1941, the Lilly staff received an article entitled "Chemotherapy of Bacterial Endocarditis." The article advised Lilly scientists that merthiolate should never be given more frequently than once in 10 days due to its toxicity and potential hazards. Exhibit 12 (Exhibit ELI-392P(2)). Lilly also sold large amounts of merthiolate to the United States government for use in the war effort from 1941-1945. "Merthiolate was an army standard issue and 22 tank cars of the popular antiseptic were dispatched from (the) McCarty Street (plant) during the war." Due to military regulations, and as a result of the toxicity of the ethylmercury preservative, Lilly was required to label the product "POISON." The "POISON" language was only added to cartons of products in certain instances, as when required by the government, and Lilly continued to fail to warn about known hazards of the product for its non-military sales and for sales related to vaccines. Exhibit 13 (Exhibit ELI-228).

So the military warranted merthiolate a “poison” while Eli Lilly kept selling it to the public as “non-toxic”. Hmm, that seems a bit unethical, at the very least…
How about this information:

The 1970’s: Lilly Lies to the FDA in a Bid to Avoid Regulation
In 1972, Lilly received an article that confirmed that its product, used as a preservative in vaccines, caused 6 deaths from mercury poisoning. Exhibit 29 (Exhibit ELI-392K(1)). "The symptoms and clinical course of the 6 patients suggests subacute mercury poisoning."

Shortly thereafter, the FDA required Lilly to provide all the information at its disposal concerning the potential toxicity of thimerosal. Lilly reported to the FDA, in a February 14, 1973 letter, that "as with other chemicals of its generation, information relating to safety and efficacy of thimerosal in animal models is sparse." Exhibit 30 (Exhibit ELI-392). But Lilly went further, advising the FDA that the product was non-toxic and cited the fraudulent Jamieson and Powell study of 1930 as its supporting scientific evidence. Exhibit 31 (Exhibit ELI-392QQ). Despite its knowledge to the contrary, Lilly continued to use the incomplete Powell and Jamieson version of the Lilly/Smithburn experiment to support its conclusions that the product was safe and "non-toxic."

ix. 1976: One Example of Lilly’s Efforts to Convince the Public that Thimerosal is Safe.
On April 27, 1976, Lilly’s Manager of Industrial Sales, W. Orbaugh, responded to a letter from Rexall Drug Company in St. Louis, Missouri. Rexall Drug had been concerned about the potential hazards of merthiolate/thimerosal and had requested, pursuant to the trademark/marketing agreement maintained with Lilly, permission to place the following warning on the product:

Frequent or prolonged use or application to large areas may cause mercury poisoning.
Okay, so it’s “non-toxic” but it can, and has, caused mercury poisoning and death. Oops! That’s just a minor “fact” that we can sweep under the rug.
That’s all of my people who suck, for now anyway. If Bill Frist hadn’t crawled under a rock, he’d be on my list too.

The Fun Continues (or Why I Really love People!)

2008-11-13T15:59:00.000-05:00

/bitching
Talk about fun for your birthday! I didn’t just have a *fun* birthday I had a whole, fun birthfortnight! Oh yeah!
Let’s start at the beginning, so to speak. The day before I was supposed to go out of town for the weekend, I started to feel a little sick. My voice was getting crackly and I was feeling a little congested. My mom and I ended up staying up until 6 am working on my Halloween costume. I was going to an anime convention for the weekend, and I was going as Sailor Saturn (from the Sailor Moon anime).

So, I’m a bit grumpy that morning when I have to get up an hour after I fall asleep to get the girls ready for school. I took a nap after they left and was feeling a little less grumpy. Yay! Unfortunately my congestion and cold had worsened some.

Most of the day Friday I just napped. On Saturday I napped the first half of the day, then dressed up and walked about the convention with my friend. I felt okay, but I could only whisper, which was annoying.

So, early Sunday afternoon we head home. When I get there I find out that Lotus decided to crawl into the dryer while my mom was folding laundry in another room. My mom heard the girls get into the laundry room, which had a sliding lock on it, and she went to get them out; unfortunately Lotus had just enough time to get a nasty burn on her arm. I put burn medicine on it later some antibiotic ointment.

I took the girls to school the next morning because I overslept and missed the school bus (again!). I showed the teacher and aides the burn, and I told them what had happened. I didn’t think anything would come of the incident, but I was wrong. The school nurse decided that Children’s Services needed to be called, even though later, other school officials assured me that they didn’t think that I was a “bad” mom or that I could have done anything differently. Hmm, yep, I think that’s the mission of children’s services; to investigate accidents. No? Oh, I must have been confused. This certainly could have been filed as an unusual incident, and I wouldn’t have minded. But neglect? Especially when I am told by the people who made the call that they don’t really think that I was negligent. Hmm, maybe I’m just silly in the head, but they either lied to me or they lied to children’s services; either you think I’m negligent or you don’t. It’s not really a “grey area” type of thing.

I kept missing the social worker when they stopped by unannounced, so I had to call and make an appointment. He said that the complaint was filed as "neglect" because of the accident. Hopefully it will be an open and closed deal, since there wasn’t any neglect actually involved. Anyway, I have installed a key locking doorknob on the laundry room, so the girls will have to be able to pick that before they could get in the room. Also, I’ve been shutting the breaker to the dryer off when it isn’t in use.

To add to the fun, I had a fever from my cold-turned-sinus-infection, and I was very tired and felt like crap. Wee!
When I took Lotus to the doctor on Tuesday there was a screw up at the sign in desk, as a lady came in after us and talked to the receptionist but didn’t write down her child’s name. The receptionist scratched off our name without pulling our charts, so we subsequently sat there for 45 minutes before I asked how long it’d be until we were seen. We were called back pretty much right away. Lotus was agitated and didn’t want to cooperate with the doctor, who repeatedly chastised Lotus and me for not being able to hold still while he examined her (hmm, restraining an anxious, frightened ten year old with autism isn’t as easy as you might think, especially when you are exhausted, sick, and near tears).

Okay, so after the fun at the doctor’s office, you’d think I’d had enough for the day. Nope, not me! I took the girls to pick up the medicine at Kroger later that day. Unfortunately Lotus decided to lie down periodically and not get up. I had to haul on her to get her to move. The nice, friendly community folks who were shopping that day were so helpful. They slowed down to stare, point, shake their heads, laugh, and make knowing glances at one another. I was obviously a bad mom with spoiled brats. Yep, that covers it. My kids and I look “normal” so we must just be spoiled kids with an inept mom. I ended up leaving without getting the prescription because I couldn’t keep the girls waiting for twenty minutes while they were agitated and uncooperative. (By the way, thanks to all of you who laughed at my family in front of your own children; you set a great example of tolerance and understanding for our future generation!)

There was one person who offered to help, but even he looked skeptical when I told him no. I appreciated the offer, but having a stranger get into the mix would most likely have only made it worse. Or Lotus might have hit him to get him away, which I didn’t want to happen.

On to more fun! I am probably going to have to use the money I was planning on using to get the girls' Christmas presents to buy a dryer, since my old one keeps getting clothes stuck in around the edges and when you pull them out they tear (and it keeps making a squeaking noise). I haven't bought them a single thing yet but... when it rains, it pours. Also, my car's heater has quit working. Yay! Pretty much all summer I was without AC, and now no heat. My car doesn’t like anything outside the 60-70 degree range, I guess. Also, when I got back home I had to snake my toilet because the girls (probably Celest- she's generally the instigator of these sorts of things) flushed at least one, if not more, whole bars of soap down my toilet. It's still not running perfectly, but it's better than it was. Someone told me to try putting a pot of boiling water down toilet, and I think I'll try that to see if it helps clear out the last little bit of soap. Also while I was gone, my garbage disposal quit working. I was thinking that I might have to get a new one, but it turns out that it just blew the fuse on the bottom of the unit. When I ran it, it did seem to be running more loudly, so I think I'll just try to avoid using it. We just put in a new disposal unit about two or three years ago though, so I don't know what the deal is.

And today I got a call from the psychologist that oversees the girls' ABA programming, telling me that we need to have a meeting to see where we go from here because my team and I haven't been cooperating with our new consultant. We missed a team meeting because the consultant insists that we have the meeting from 3-5 on Tuesdays (which is the only day we could all agree on). Problem is, the therapists can't get here at three and the girls are still at school. Argh! Why, why, why? Also, "it would be more convenient" for them if I could meet them at their office since they are so busy. Nevermind that it takes me about 35-40 minutes to get to their office. I don't have anything better to do. Nope, not a thing.
/end bitching

More Silly Things...

2008-10-24T08:17:00.000-04:00

I want to share another silly thing that Celest said the other day.

She had sneaked into my vitamin cabinet (Tangent: AAAHHH! Does anyone know a safe and effective child lock for a cabinet besides the baby locks that you have to release with your hand to open? And that isn't a lock and key?). She found some old ear plugs that I had bought for when they were taking swimming lessons, which, of course, went unused. They were blue foam like circles that you form into the shape you need to plug your ear.

Anyway, I think Celest thought they were bubble gum and she had put one in her mouth. I saw her, freaked out, and told her to spit it out. Instead she did a cartoonish gulping face and sound when she hurriedly swallowed it. I picked up the other ear plugs and put them in the garbage after I'd admonished her that it isn't safe to eat ear plugs.

Later that weekend she went to my mom and said, "I want ear plugs please."

My mom told her, "No, you can't eat ear plugs!"

To which Celest replied, "Delicious!".

Hmm, now if only healthful foods were so desirable to her. Actually she's a pretty good fruit and veggie eater, but lately she's been wanting to eat inedible things. I don't know if that is considered pica or not, but it is driving me crazy!

This story also reminds me of something she said several years ago. She had a cold and had started to pick her nose because it was congested. I tried to teach her to blow her nose, but she couldn't quite get it. So, I would just have her wash her hands well every time I caught her picking her nose.

Then she decided to take it a step further: she would put her finger in her nose then in her mouth. I would tell her it was dirty and yucky and make her wash her hands. Then one day she stood in front of me, put her finger in her nose, then licked the finger, and declare, "Kid delicious, mom nutritious."

It was gross, but it was also so funny that I couldn't help but laugh. Evidently Kix isn't the only kid delicious, mom nutritious option out there...

Parenting-genre Magazines and Their "Great" Advice

2008-10-23T14:54:00.000-04:00

If I read one more vaccine safety article quoting Paul Offit M.D. I'm going to scream (or punch something, or vomit, or maybe all three!). Hmm, do you think he may be the slightest bit biased about vaccine safety and effectiveness? No? Hmm, well he is a co-patent holder and co-creator of the Rotavirus vaccine, which is (surprise) on the "mandatory" vaccine schedule.

Let me back up at this point and say that I am not "anti-vaccine". I am, however, "anti-mandatory-vaccination". There is so much mis-information about vaccines that it is depressing and angering.

A few of my biggest vaccine-BS issues are:

Vaccines no longer contain thimerosal. While it's true that some vaccines are thimerosal free, most have a reduced thimerosal content from what they previously had. It is called "trace amounts". However, each person's toxin filtering system is different. Some people can handle much more than others. Don't be fooled by people who say vaccines are "thimerosal-free". If you are concerned about the content of your child's (or your own)vaccine, ask to see the medicine insert that came with your vial. Also, most flu shots aren't thimerosal free. Rhogam, which is given to pregnant women who have Rh factor, often contains thimerosal.

Vaccines guarantee immunity. Nope, they don't. What medical procedure is 100% effective with no side effects? Pretty much none. So just because you are vaccinated doesn't mean you'll never get the disease. I have an adult friend with a healthy, "normal" immune system who is fully vaccinated, and she's had whooping cough twice.

You have to vaccinate your children to have them at public schools. In almost all U.S. states this is false. Despite living in a state that offers the option to decline vaccines due to religious, medical, or philosophical reasons, I've received two letters from schools in the past telling me that if I didn't get my daughters their booster shots by a certain date that they'd be unable to return to school. It was a form letter that was worded in a very officious and pushy tone. I don't understand how this is legal. I printed out and highlighted my state's statutes regarding immunization and sent it to school. No where on the form did it even hint that you could decline vaccinations and still send your child to public school. I wonder how many parents have given in and gotten boosters for kids because they thought that their child would be denied a free, public education without them?

Vaccines have all but irradicated horrible childhood diseases and the deaths caused by them. Hmm, I wonder if increased cleanliness, clean water sources, and advanced medicine have had any effect on the spread of disease? Nah, it's solely the wonder of vaccinations that have kept us disease free...

Gardasil! Ahhhh! This vaccine might be the one that pushed me over the edge. Let's look at a few facts here (that are conveniently left out of the "One Less" commercials): there are over 100 different strains of HPV! Human papillomavirus can cause both genital and non-genital warts. There are 13 strains that lead to cervical cancer, two of which are thought to cause about 70% of all cases of cervical cancer. Gardasil may grant immunity to four strains of HPV (the commercial uses the word "may", so that's why I included it and italicized it). Still, you need to get a pap smear every year to check for cervical cancer and other health issues. And, did you hear about the young girls and women who have developed Guillian-Barre Syndrome, paralysis, fatigue, fainting spells, and even some who have died from the Gardasil vaccine? Nah, I didn't think most people had. Did you hear about Merck lobbying to get Gardasil on the "mandatory" vaccine schedule for girls? Hmm, nothing seedy about this. Nope! Hurry, get your Gardasil now! You may get protection against four of over one hundred strains of a virus that may or may not cause one of the most curable cancers known to man!

Edited to add: Blogger decided to quit working while I was in the middle of this post and I hadn't copied it in a while, so a bit of my diatribe got cut off! Argh! In a nutshell, I was: pondering why exactly infants and toddlers need to be vaccinated against Hepatitis B, which is primarily spread via sexual activity and needle sharing; bitching about Amanda Peet's interview in Cookie magazine in which she sang the praises of Dr. Paul Offit and called parents who choose not to vaccinate their children "parasites" (she later sort of apologized, while emphasizing the importance of everyone getting vaccinated); how I'm not anti-vaccine, but I am pissed about information about vaccine's potential side effects not being given to parents; and I bitched about how schools in states that allow parents to decline vaccination aren't very supportive or forthcoming with parents when they send home letters saying your child will no longer be able to attend school unless they get vaccinated by a certain date.

Enough ranting for now!

A Touch of Violence

2008-10-11T14:43:00.000-04:00

My kids seem to be going through a patch (please let it only be a patch!) of violence. Generally, they tended to only hurt themselves, one another, or me. But lately they've been branching out to others, most specifically their teacher and teacher aides. :(

So far it has involved slapping, pinching, biting, and the occasional head butting. :( We are setting up a behavior plan to try to nip these things before they get worse or become habits (dang that muscle memory sometimes!)

I suppose we'll wait and see. Redirecting, restraining, and waiting out the storm are all that we seem to be able to do for now...

Another Funny Comment

2008-09-26T20:17:00.000-04:00

Celest was looking through a kitchen drawer the other day, and she found a basting brush (which looks like a giant paint brush). Since I never have used it I told her she could play with it.
She got really happy, lifted it in the air, and announced, "This is my sanitary napkin!" She was so serious, even officious, as she made her pronouncement that I cracked up.
We've been working on puberty related issues, so I'm assuming that someone at school called a "pad" a "sanitary napkin". :)

When We Don't Think They are Paying Attention...

2008-09-14T16:36:00.000-04:00

One of my daughters is nonverbal, so she uses a Vantage speech device. She usually only requests things (generally food) or stims on the sound of the device.

However, the other day my mom was watching the girls for me and she told me this story:

Lotus was on the couch, minding her own business and stimming* on her speech device. Celest was arguing with my mom about something (probably going outside or getting more snacks). My mom was raising her voice, trying to get Celest to listen to her.

Without really looking in their direction or giving any outward appearance of noticing the altercation between her sister and grandma, Lotus typed this on her Vantage, "Grandma yelling, yelling"!

The photo is from an old mess that Celest made with a ten pound bag of flour that was left out on the counter overnight...

Desperately Seeking Slumber

2008-08-02T20:01:00.000-04:00

This year has been rough. So far, I think it has been the worst year of my life. Maybe I'm being melodramatic. Still, that's allowed every now and again. I think it's cathartic to feel sorry for myself every now and again.

Anyway, the girls have had a tougher time than usual falling asleep this year. Generally we have sleep cycles that last 3-6 months; one cycle will be good and the next will be not-so-good. A good sleep cycle (remember, "good" is a relative term) entails getting roughly 6-8 hours of sleep, most of them occuring after midnight, for at least five or six nights a week.

A bad sleep cycle, on the other hand, is anywhere from 2-6 hours of sleep. Sleep can start anywhere from 10 pm until 5 am, and can possibly be interrupted multiple times throughout the night.

Bad sleep cycles affect all other facets of life: oversleeping and missing the school bus, gigantic messes being made while I am sleeping, grouchy moods, and other things of a generally bad nature.

This current bad sleep cycle is the worst we've experienced since the girls were infants. Earlier this year, when they weren't sleeping, but I was, the girls pursued all sorts of delightful activities. Let's see, there was the ever popular "rip the childlock off the fridge and destroy all of the food in the messiest possible fashion" game. Also, the "poop on the carpet and make a nasty mess of it" game. The most popular of all was the "plug the kitchen sink drain, turn on the water, then go pass out somewhere while the downstairs floors accumulate an inch or more of water game".

Generally, while these household Olympics are going on I am somewhere (generally the floor or my bed) in deep, deep REM sleep. I'm quite the heavy sleeper,which doesn't help matters any.

In our quest, or I should probably just say "my" quest for slumber, I've tried many actions. I'm not all that keen on using medication, but after just two months of this fun I threw in the towel and decided to try something.

We'd already used "natural" products to help induce sleep and relaxation, and they didn't work. We tried transdermal melatonin, GABA, inositol, valerian root, and other herbs and minerals with calming properties. My kids weren't falling for it.

Then we went the prescription route. First was Neurontin, generally used for those with Epilepsy. I thought it worked the first night, but it also could have been due to the fact that the girls had been up all day, since about 4 am, after only four hours of sleep. The next two weeks I saw no noticeable effect from the medication.

Then came Depakote, which is generally given to treat mania, Epilepsy, and migraines. It worked for the first week or so, then seemed to begin losing effectiveness. We upped the dose more, and again it worked for a week or so then seemed to not work. It also made the girls eat non-stop. They put on weight and retained water. Also, we had to have blood work done to see if it was overtaxing the liver. Yay!

Then came Clonidine, which is generally used to lower blood pressure. We used this for about a month and saw no noticeable results.

And finally came Ambien, which is meant for those who have trouble sleeping. We started with half a tablet: nothing. One tablet: nothing. One and a half tablets: some drowsy looking faces and the ever-present urge to fight off sleep. Two tablets: drunken behavior (staggering around, bizarre sayings, etc.) and sleep.

Even with an adult dose, the girls can fight off the urge to sleep for two to four hours. Once they get to sleep it isn't a guarantee that they'll stay asleep for more than 4-6 hours, but they generally will go to sleep earlier overall. I don't really enjoy giving them a sleep medication, but it has cut down on some of their late night shenanigans.

Unfortunately, when I went to refill our prescription I had a surprise: our insurance only covers 30 pills a month per child. So, this means that I'll have to fork over $120 or so a month if I want the full dose. And, it seems, the prescription was only written for 45 pills a month, which will still leave us 15 pills short, per child.

I desperately wish that I could give them my sleepiness. If I pawned my exhaustion off on them I'd be able to stay up about 18-22 hours a day and get all sorts of work done. Or goof off and play video games. Either way, it'd be a good deal. For now however I'll just have to keep (day) dreaming...

Bruno Bettleheim and Autism

2008-07-13T22:38:00.000-04:00

At one point, autism was thought to be caused by lack of love and attention from the parents, particularly the mother. Bruno Bettleheim was the man behind this erroneous theory of the “refrigerator mother”. Bruno was supposedly a Jewish psychiatrist who survived Nazi concentration camps in WWII.

However, it was later proven that he wasn’t a psychiatrist. He was in the construction business. His charismatic and commanding presence led others to believe him when he claimed that he was a psychiatrist. It was in the camps that he developed his theory about parents of individuals with autism by comparing the relationship between parent and child with autism to that of the Nazi officer and camp prisoner. He speculated that just as the concentration camp prisoners withdrew and became socially aloof and selectively mute due to the cruel and unloving situation that they were in, that the same could be assumed of children with autism. He drew his conclusion from his own experience, not a study.

He later noted that the parents of his autistic patients were “cold” and “detached” in his office. It is my experience that during diagnosis, parents can feel helpless and depressed due to their concern for their children. I know I was. However, Bettleheim concluded that this was why the child was autistic; their parents were cold and uncaring. However, I believe that there was a causal relationship. Bruno just had it backwards: the parents were aloof and depressed because their children were not developing correctly and they didn’t know how to help. Parents of autistic children were to suffer from this misunderstanding for years to come. Many families had their children taken away and put in homes because the parents were believed to be detrimental to their own children’s health.

Luckily, this myth has been almost completely dispelled. There are still plenty of emotional and psychological challenges that face parents of autists today. It is very frightening that a disturbed individual who was posing as a medical authority stigmatized parents and destroyed families for several generations to come with his hateful hypotheses. Many people interested in autism still aren’t aware of Bruno’s actual background. The hurt that this man caused by his speculations didn’t stop at just tearing families apart and causing immense guilt and grief to parents.

He also ran a rehabilitation program for children with autism. Many of the children weren’t technically autistic. He hit and verbally abused the children, according to accounts that several of the children corroborated after release from the program. By taking in children that didn’t actually have autism and “curing” them of their autism, Bruno gave the appearance of knowing what he was doing.

Of course some of the children evaluated after treatment were found not to have autism. It wasn’t Bettelheim’s doing though; they didn’t have autism to begin with. Bettleheim’s methods were spurious at best. The man ruined lives and caused a greater stigma for a disability than it already had for his own personal gain. I think that there are some lessons to be had from this. I am not suggesting that medical practitioners in general are frauds or fakes, but rather that it is a good idea to check credentials and question authority when something doesn’t seem right. I am glad that Bettleheim’s ideas have largely been dispelled, but I am sickened that they gained such notoriety in the first place.

(This writing also appears on Associated Content :http://www.associatedcontent.com/user/1155/laura_munion.html)

Mixed Blessings

2008-07-13T22:30:00.000-04:00

When I first suspected that something wasn’t right about my daughters, I was nervous and anxious. When I realized they both had autism I was depressed and angry.

I love language and reading, so when my twins were a little over a year old I started trying games that would increase vocabulary, teach proper pronoun usage, and build conversation skills. I know that’s a tall order for a one year old, but the games were developed by speech and language experts.

It was then that I realized my daughters didn’t have the fundamental skills to play these games. Their attention would wander to anything else remotely interesting in the room.

It was also around this time that I realized my daughters were no longer using the words they used to know. No more “mom,” “cup,” “cookie,” or “ball.”

It’s been almost six years since autism became part of our lives. I’ve learned many things and met many wonderful people through my daughters’ autism that I would never have otherwise.
The biggest thing I’ve learned is tolerance and understanding. If I see another parent with a child who is throwing a tantrum or having a meltdown I don’t stare. I don’t make loud remarks about how I’d handle the situation differently. I know how embarrassing and frustrating it is to be treated as a spectacle in public.

A trip to the grocery store is all it takes to remind me of the ignorance of disabilities that the public in general has. If I can help on person understand my daughters and autism better, I hope that it may save another parent of a child with a disability a rude remark or stare from a stranger.

I’ve also learned that as long as I’m not intruding on someone else’s rights, I shouldn’t care what others think of me. If someone sees my children and me out and think that we act weird, oh well. I can’t educate everyone I meet everyday about autism.
Autism has been a mixed blessing; thought I’ve gained a tolerance and understanding that I may not have learned without autism, I know my daughters will face difficulties due to autism. Though as long as I’m alive, I’ll share the blessing of knowledge, tolerance, and understanding my daughters have given me.

(Note: I wrote this about two years ago; my daughters were diagnosed over eight years ago...)

(This writing also appears on Associated Content :http://www.associatedcontent.com/user/1155/laura_munion.html)

A visit to the library

2008-07-13T21:48:00.000-04:00

“Shhh,” said the security guard hovering over my daughter and me. Like I hadn’t thought of that.

We were in the library for only a couple of minutes when my daughter decided to throw herself on the floor and start screaming, “Car! Car please!” This might not be that unusual for a two or three year old; my daughter is nine.

We’ve been patrons of this particular library for about six years. Most employees know that both of my daughters have autism. They are usually very helpful.
I’m not sure what this guy thought I was trying to do, as I wrapped my arms around my daughter and tried to get her to walk out of the library. I had even been shushing her myself. Yet there he stood as I repeatedly tried to carry, coax, or cajole my daughter out of the library’s otherwise peaceful atmosphere. Shushing us, but offering no help.

I finally was able to get her on her feet and hustle her out the door like a hostage taker, with my fingers pointed into her back instead of a gun. The security guard didn’t follow us out of the library, for which I was thankful. I’d had enough of his help for one day.

This wasn’t the first time that I’d had this particular security guard’s help either. On a previous visit to the library I had both of my daughters with me and one of them decided that she didn’t want to leave when I said it was time to go. She wriggled out of my grip and crawled quickly to the video section, where she promptly began to knock video cassettes off the bottom shelf.
I couldn’t get my other daughter to come with me to get the video vandal, so I left her standing by the returns desk while I ran to reshelf the videos and retrieve my first born. While I did that, Lotus thought it would be a great time to check out what is behind the counter in the employee section. Luckily for me there was a nice lady working at the counter and she kept Lotus out of things while I half dragged Celest toward the return area.

The employee offered to help me out to my car; she knew both of the girls had autism and was being genuinely helpful and compassionate. This is when the security guard decided that he had to escort us out with the employee. I know it is probably just a standard cover-your-a** policy, but I found it both humorous and insulting. What did he think I was going to do, mug the lady in the parking lot? Celest was more menacing looking than me, so maybe he thought she was going to try something.

I guess I should be happy that the library employees don’t lock the doors when they sees us coming, but I can be an ingrate sometimes. For now I’ve decided that it’s just easier for me to go to the library by myself. I’ll save the family trips for when I’m feeling feisty and energetic.

(This article also appears on Associated Content :http://www.associatedcontent.com/user/1155/laura_munion.html)

If a parent murders a child who has a disability or life-altering medical condition, do you think the justice system is more lenient with sentencing?
Yes, And rightfully so. Yes, but it's unfair. No, it's pretty much the same for any parent who murders his/her child. No, but it should be.
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