27 March 2010


I'm as happy for Spring's arrival as the rest of the state, but FIREWORKS??? It's 9:30pm and I hear fireworks outside. Either that or someone is slaughtering everyone in town with a very large caliber weapon. I'm opting for the fireworks.

If anyone in Vermillion wants to experience what life is like in a back bay environment or with some very large and choppy lakes, drive up Hwy 19 in the morning. It was shocking. It made my photos of the flooding on University look pretty minor. It's pretty cool to see the flood plains attracting waterfowl and just how different everything looks.

21 March 2010


Okay, so I found a job FINALLY! This is super spiffy news. Hopefully my back holds up and I don't have a nervous breakdown dealing with idiots on the phone.

Just for fun, I'd like to mention that I'll be working indirectly for a company that I've been boycotting for THIRTEEN YEARS! Which really just proves the point I've always tried to make, "I'm too poor for principles"

In other news, Kellie's grandmother is horribly ill and might die and the doctors don't even know what is wrong with her. If anyone could spare a little prayer time for Pat, I thank you for it. Pat is one of the few people in the world who cares deeply for people she hasn't met yet. She's a wonderful woman and been a beautiful example for me. She's kind and beautiful and has a soft spot for the underdog. She would give her last dollar to a homeless guy. I love her lots and lots. She's also the only family member my daughter has nearby that she can rely on and this is all happening at a very bad time for Kellie. I guess there is really never a good time to be at death's door, but this is especially worse.

19 March 2010

Family Legends

So, I stole this idea from here who stole it from here


(Most of these will be from my dad's family because my mom's family tended to keep their legends to themselves!)

1. My father joined the Navy at the age of 15 to serve in WW2. Legend has it that the recruiter told him he'd need his father to sign for him and pointed to a homeless guy across the street and said "Isn't that your father over there, son?". My dad got the guy to sign the paper for him. (I found this was true in military records!)

2. My father was forced to go by a different name in school than the name he was born with and used the rest of his life. (Long lost cousin only knew of him as "Uncle Charlie" but my dad's name was Louis)

3. My father was kept in the basement by his mom and step-dad because he wouldn't disavow his natural father. Said natural father was a bigger dirt bag than one would want to admit being related to, by the way.

4. Legend has it that my paternal grandfather's siblings included three nuns and a murderer.

5. My father's step-father, Malcolm, ran away and joined the circus when at the age of 12. He later became a semi-famous boxer on the East coast.

6. My mother's paternal grandfather, Jesse, was one of the first chiropractors in the US. He wrote two books that were never published, one on chiropractic and one on his childhood and healthful living. He lived to be 104 (if I remember right).

7. Jesse didn't believe in eating white flour or white sugar. He only violated this once a year on his birthday to eat apple strudel.

8. Jesse's first wife died from the flu leaving him to raise 2 & 4 year old boys. He left them with women called "the aunts" in rural PA and went about his business in Philadelphia. He was apparently quite the player, and even though he was married more than 5 times, he was still buried with his first wife, Belva. He said no other woman could measure up to her and that is why all his relationships failed. Personally, I blamed his temper :) Although, I like the sentiment about his first wife.

9. Apparently, my Swedish great-great-grandfather is the result of a 30 year old house servant hooking up with the 14 year old son of her wealthy boss. Supposedly, the wealthy boss built her a cottage to live in and raise her child.

10. One set of my great-great-great-grandparents (Jesse's grandparents) ended up hating each other enough to not only live separately, but they also both told the census taker that they were widows, even though their spouse was living separately just down the street!

And yes, 98% of my family legends are completely dysfunctional. I have a very colorful gene pool.

EDIT: My husband insists that I admit to being 12th cousins with Barack Obama. The End.

18 March 2010

Water, Water, Everywhere!

So, this is University Road. I'm not even sure it goes over the river right here. Two days ago, the left side was pretty much dry and we drove past here. Not so much with the drive-ability right now. Flooding is pretty dang amazing. I'm guessing this farmer isn't going to be planting anytime soon though! I put a couple videos of this up on youtube. The videos are even better! I might try linking to them in the morning. I'm a sleepy tree.

For the record, this is some dude's farm land, NOT A LAKE!

17 March 2010


Much to my surprise, they went ahead and did the IEP today and it went really, really well. As long as the discussions make it on to the final IEP, I think we are good! This is soooooooooooo great because we really did not want to move! :)

16 March 2010


So Rejeanne's preschool teacher called today to confirm the meeting tomorrow. When she did that she says "we'll be talking about the diagnosis and then we'll have the IEP in May". Um, WHAT!??! I told her May wasn't acceptable for us. We've been waiting coming on two years now for a diagnosis. What is the point of a diagnosis if no one is going to do anything? She kept sticking to May, I kept sticking to as early as possible. This is already approaching ridiculous!

Anyways, I told her my understanding was that this meeting was to go over the "recommendations" from the autism evaluation, which I (wrongly) assumed meant we'd be changing the IEP at the same time. Then the teacher says "Well, we can talk as a team about adding some goals if you'd like, but Rejeanne has not made any progress so far towards her current goals". No kidding? What a shocker. Who can believe an autistic child isn't making progress with 10 minutes of unspecified "direct services" per day in a preschool setting? I guess that explains why they haven't sent home the every 9 week progress reports we are supposed to be receiving.

I'm just wondering how far this will have to go for them to wake up and realize they have an obligation here and that I'm not the type to just sit around and let them do as they please without at least explaining the reasons behind it. I'm gonna try really hard to bring nothing but honey and sugar to this meeting but if that doesn't work, there is still some other options.


15 March 2010


I think Dante would have written about IEPs if they had been around back then. For those of you who haven't experienced this special kind of torture, an IEP is an Individualized Educational Plan. Basically, you get summoned to the school and you sit at a table with 4-8 people who are far more educated than you. They all stare at you while one of them explains to you in educator lingo what services they plan on providing your kid and then they tell you to sign it.

Well, that's how they hope it will go anyways. Frankly, that is exactly how the first one went. I was like a deer caught in the headlights and put a little too much trust in them on many levels. The end result of that was they said a few things that didn't happen and didn't make it into the final version of the IEP.

I happen to be one of those people who learn from their mistakes fairly quickly and have a knack for negotiating the murky depths of bureaucratic uselessness. I've spent the last couple weeks fine tuning the plan of action for this next IEP meeting and I still have a bunch left to do but I have to admit, this whole thing is looking good! Now, I'm still about 90% certain they are going to say "no friggin way! Have you taken your meds today?" when I tell them what I'm expecting them to do but I have such a ginormous stack of evidence to back my position that they may just cave.

My meeting is on St Paddy's day. It's a shame I don't still have my green pimp shirt. I'm sure that would have made a lasting impression on the IEP people.

11 March 2010

Jellyfish, Jellyfish, JELLYFISH!!!!!!!!!!!!!

The title of this post is a phrase heard in our house at least 6 times a day. Rejeanne is completely obsessed with jellyfish and butterflies right now. Here are some objects she yells "JELLYFISH!!!!" at:

Of course, this all started with Spongebob jellyfish.

And she can recognize a real jellyfish.

And the Jellyfish hat.

And she thinks my lamp is very jellyfishy.

And then she sees the logo on my tights and says "JELLYFISH!!!!" and we are like, "uh...not a jellyfish!"


But when ya turn it upside down...JELLYFISH!!!!!!!!! I love Rejie :)

09 March 2010

Temple Grandin

A few people have been telling me I should watch this movie that has been on cable lately about Temple Grandin. I had no clue who this woman was but I assumed she was a successful (i.e. more "normal") Autistic woman since it seemed to keep coming up in the context of Rejeanne's recent official diagnosis of autism. Now, these people who keep bringing up this movie are people who deeply care about Rejeanne so I have stopped myself from screaming "IF ALL CHILDREN WITH AUTISM COULD TURN OUT LIKE THIS WOMAN NO ONE WOULD HAVE MADE A MOVIE ABOUT HER".

I feel like the lack of official diagnosis for the last 18 months coupled with Crimson's more severe symptoms in this age range (and the fact that no one ever suggested she be screened for anything)has somewhat inhibited me from facing reality with Rejeanne. Also, the internet is overwhelming. I have never seen so much repetitive information on one subject in my whole life, while still not addressing in a simple, straightforward manner the nuts and bolts of what I need to know (what treatment is appropriate when, how to get it paid for, what are her rights for treatment, what should I expect from her, how do I discipline her, do I discipline her?, what are the outcomes of various therapies, what is the science behind them, is there a downside to trying ABA?, etc and then some).

One thing I'd like to know, where are all the adult autistic people? I know you all are there somewhere, but where? I'd like a chance to see the full range of outcomes and to meet some people who have lived this life already.

Another thing that is bothering me is the desperation levels of a lot of parents on the internet. I'm sorry, but Autism is not the worst thing that could happen to a child. It's really not. It's hard some days. It can be sad some days. Overall though, my daughter is unlikely to die from autism. She seems to be happy and enjoys life. Some of the crackpot stuff out there claiming to "cure" autism is frightening, as is the volume of parents willing to give these things a try without any science supporting the methods. Autism is not cancer but some people seem to treat it that way.

Even though I want (and will make sure that) Rejeanne receives age and skill appropriate services to help her achieve as much functionality as possible so she can be independent later, I don't have this burning desire to "cure" her autism. Maybe that makes me a bad mother or something, but I happen to like who she is. I just want her to develop the skills she already has and hopefully develop meaningful speech. I don't want to make her "normal" or force her to do every single thing the way experts/society/public schools think it should be done. I'm also one of those people who think it is okay to be deaf. I understand why some deaf people don't want to correct their hearing even when it is medically possible. We don't all have to be the same. It is okay to accept that we aren't perfect specimens of societal standards. It's okay to look in the mirror and smile at the funky bird staring back at us. Seriously, it's okay.

As for Temple Grandin, I may bite the bullet and watch the movie now that I have read an interview she did. She embraces the autism and works with what she's got to the best of her ability from what I can tell. Most importantly, she's not sitting around waiting for a "cure", and the rest of us shouldn't be doing that either.

Here's a bit from her interview posted on wrongplanet.net:

WrongPlanet.net:What do you think about curing Autism? You've said things like "genius comes from autism" but you've also supported the ABA.

Temple Grandin:Well the thing is, with a little bit of autism, you know, if you have mild autism, you'll get genius like einstein. Too much of autism, you're going to have a severely handicapped child who's going to remain nonverbal and if you don't do things like aba, they're not going to function at all. There is no way with any treatment they have that you're going to cure autism. There's basic abnormalities in brain development.

I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics because if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social people.

If we didn't have a little of the autism trait we wouldn't even have this building here today with all the electricity in it, your video camera, powerpoint shows... None of this stuff would even exist.

WP: So if there were something that cured all the autism genes, you wouldn't support that?

TG:No, I would not support that. because there is a point where mild autistic traits are part of normal human variation. Because on the other end of the spectrum you have Williams Syndrome, and if you look at the brain abnormalities, they're exactly the opposite of autism. the whole back of the brain, where the hard drive is--there isn't too much there. But all the social emotional circuits are hooked up so [people with Williams Syndrome] are hyper, hyper, social. I'm gonna bet you there's a lot of yackety yackety salesman that don't talk about much of anything who are Williams Syndrome variants. But then you get to a point where a person [with Autism] cannot talk, they're self inuring themselves, and they cannot live independently. That [is something] you would want to eliminate, if possible, but you would not want to get rid of all the autism genes because you wouldn't have any computers-- you wouldn't have any scientists.

I think this more middle road view of autism is the place to be. I think it is realistic, genuine and values the good traits and inherent personhood that seems to be missing in so much of the "autism debate". So, I'm going with the above.

02 March 2010

Change is a comin'

It would figure that literally the day after I nail down my five year plan, something happens that makes said plan seem much less nailed down.

I very erroneously assumed that getting Rejeanne diagnosed would somehow lead to her receiving proper care for a well-established medical condition. Oh, how wrong I was!

It turns out that South Dakota is not so much on the ball with this whole autism thing and they haven't bothered to do anything about funding treatment or laying out best practices for the school districts or anything useful at all!

This leaves me with a few options:

1. Apply for SSI/Medicare and wait til hell freezes over and hope for the best.

2. Put Lee on a diet, change his entire personality, then force him to join the military so we can get Tricare.

3. Find a job with the Feds and hope their insurance is similar to Tricare.

4. Move to a state that has sane coverage and/or better procedures in place, such as our fine socialist neighbor to the northeast, Minnesota.

5. Move to Sioux City, cross fingers and try to piggy-back off of Alisha's blazed trail of services for her son. This would let us still have USD as a schooling option & I'll have no excuse to not go see my old friends and cuddle all the new babies. Services for Rejeanne wouldn't be like MN, but it wouldn't be a junky waiver/lotto system and other kids in that district are getting ABA, so at least they acknowledge it is the only thing to do with empirical evidence supporting its use.

6. Give up on college for eternity and move to NH, the intentional libertarian stronghold in America (Porcupine!), which for some reason still cares enough about human decency to ensure autistic children get medical care. (Dear East Coast, why do you feel $20k+ is an appropriate tuition for a state school? You do realize that most folks think UNH is just as podunk as USD, right?)

7. Become a pimp.

8. Spend a great many months/years trying to convince the Vermillion School District to pony up the funding for 20-30 hours a week of ABA therapy just because it is the right thing to do (oh, and will save them $2 for every dollar they spend in the long run). While we wouldn't have to move (rockin'!!), I'm pretty sure they'd fight me tooth and nail on this one for at least a year. I'm not willing to wait that long, which means I'd have to raise an ungodly stink and call an advocacy attorney and probably sue them in the end. FYI, lawsuits take forever. Rejeanne would be 15 before it was done. (ok, probably 8-9 would be more realistic, but still)

If anyone knows a trick to scare the bejeezuz out of a school district to make them throw money at your every whim, please let me know. I'll also accept tips on getting them to just provide what is proven to work. Obeying my whims is not nearly as necessary as I pretend that it is.

Unfortunately, despite very diligent efforts on my part, it took 1.5 years just to get a diagnosis. At this point, every day she goes without the ABA, the longer she will need it later and the less effective it will be.

Please feel free to weigh in on which of the above options seems the most reasonable to you. While I acknowledge my pimp hand is strong, pimping and pandering is unfortunately against my morals these days so if you vote for #7, it's like voting for Nader.

Also, rich people reading my blog, you don't need that third Maserati. If you have that kind of money laying around, I'd like to suggest that my adorable daughter's ABA is a much better use of your cash. It's only $50 per hour. What a deal, right??!! Probably even cheaper than a Maserati.

Maserati = approx. $120,000
$120,000 in ABA hours = 2400

That would be a year and 8 weeks of therapy. From what I hear, that's about how much she'd need (provided she responds to it at all).

Hello? Rich people? *echoes*

Oh well. You'd think there would be at least ONE rich person who finds this on accident while surfin' the 'net on their jet while googling the price of the new Maserati GranTurismo. What the heck is the point of even tagging these posts with such things if I can't lure in just ONE generous benefactor?? It's because we don't live in Africa, isn't it?