Rejie vs Coyote



Here's Rejeanne



Today is Rejeanne's first full day of school this year. She did NOT want to go today. She pitched a huge fit this morning, but gave up on it once she was in the car. We get to school and, as I'm parking, I see a guy in a coyote mascot suit approaching small children as they head to school.

Here's the Coyote

All I can think is "NOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!! She's never going to want to come here again and the fit is going to be HORRIBLE!!!!" So, I decide maybe I should try to warn her, so I ask "Rejeanne, do you want to see the coyote? Look over there, do you want to go see the dog?" Then the most amazing thing happened: she said "want to see dog".

We go over to the school, and the coyote approaches, and I tell him not to, so he just stayed put and knelt down. Not only did Rejeanne smile and approach him, she offered him her Gary.

Here's Gary

Rejeanne was smiling and gesturing, almost like she was excited there was someone to interact with who didn't talk to her and didn't expect her to talk back. The coyote snuggled Gary and offered the snail back to her. She took it, then coyote opened his arms for a hug, and she demurred, so then he put his hand up for a high-five. She was all about that and gave him a high-five. Then we walked into school.

I was fighting back the happy tears. This was so amazing!

Gymnastics

Today, Rejeanne did this:

I think Rejeanne is amazing. I really do. I've been wanting to get her to try gymnastics because it is a way she can be up high and doing wild stuff without getting in trouble. She has incredible balance, too! Unfortunately, with any endeavor, there is the autism in the way of immediate satisfaction. It usually requires a few sessions of her curled into a ball howling before she's willing to even take a look at what you want her to do. With this grand gymnastics experiment, I thought if I could try to prep her with YouTube videos of gymnasts doing awesome stuff, it might make her more willing to participate when she saw the equipment.

I don't know if it was the prep, the actual full night's sleep she had last night, or just purely the grace of God, but Rejeanne actually warmed up and participated at her FIRST gymnastics class!!! She rolled the ball, went into the ball pit, spent a TON of time on the balance beam, got on the tramp, and was SO FLIPPIN' HAPPY!! She was chattering the whole time. She let a stranger pick her up out of the ball pit. She said she had fun. She was so excited. I seriously almost started crying. I can't remember the last time she was so happy, talkative and engaged. I'm so thankful for the upper elementary principal/gym coach, the gymnastics student and the parks dept who all had a hand in giving Rejeanne a chance to do this.

I wish I had thought to get a video of it. Maybe I will try to sneak one next time!

The Cool Part of Autism

In the split second it took me to click the comment link on Flying Tomato's page, Rejeanne saw the critter in the fern. I've never seen someone find a hidden object so fast in my entire life. I clicked away from this image so fast, I would never have even thought she could have seen the picture, much less the dragonfly! How did I know she saw it? As soon as I clicked away, I hear Rejeanne say "Wormy the Butterfly under the tree". The second I heard her say that, I clicked back to the pic and said "Where is it?" and she hopped on my lap and put her finger right to the dragonfly, then ran off.

My child is AMAZING! :)

Here's the pic (somewhat cut off by blogger uploading for some reason) for the curious.

Autism Smackdown!

Every time I read a story/article/opinion like this one by Lin Wessels (weird that we have nearly the same last name, eh?), I get ANGRY. Now, before you all think I'm some meanie who doesn't have any sympathy for some poor woman dealing with an autistic child, I have one of those too. It's just this mindset as expressed in this article makes me froth at the mouth.

1. Using phrases that make it sound like the child is dead. (In this article, "Our only child was taken from us by autism.")

2. Using phrases that make it sound like life is kinda over. (i.e., "Autism already rocked my world. It is all of you who are not yet touched by autism whom I am trying to spare.")

3. Acting like autism is drastically increasing without acknowledging that screening has become a normal part of a two year old well child visit, when even 10 years ago, this was not the case (i.e."Chances are, at the rate we're going, one day in the not-too-distant future, autism also will claim your family. I sincerely hope and pray not, but the drastic incline in autism statistics - sad, but true - speaks for itself")

4. Outright fearmongering and placing blame on mercury in vaccines, even when the child is born after 1999 and thus should not have had any exposure to mercury in vaccines unless the parents did a flu shot (which most folks don't do for a healthy infant). Like this excerpt from the above linked article:

"According to his records, our son Sam has all the classic signs of regressive autism, meaning he was developing normally until one day something significantly changed.

Sam has undergone all of the genetic testing for autism to date. He has none of the known genetic biomarkers of the disorder. There are thought to be more than 200 biomarkers.

Sam repeatedly has documented toxic levels of mercury in his tissue and blood. He also has an overburden of testosterone. Testosterone inhibits the natural excretion of heavy metals, namely mercury. As we address both of these issues, our son progresses and improves slowly but surely.

These questions remain: Why our son? Where was he exposed to toxic levels of mercury other than his childhood vaccines? And if no one can answer these two questions, whose child is destined to be next?"

It seems like people are soooooo desperate to pin autism on something that they are willing to completely ignore hundreds of studies showing vaccines are safe in favor of the Wakefield study, that was later shown to have falsified data, that MMR vaccine is not safe.

Autism is not a death sentence. My daughter with autism is bright and beautiful and brings TREMENDOUS joy into our lives. Sure, it is difficult to have someone you love who has extreme difficulties in communication, but life is not perfect. No child is perfect. However, our daughter is alive and happy, even if she may not get the "normal" life path people expect when they have children.

With that said, it is my deepest hope that people will stop treating autism like a death sentence. I hope that people will face reality and stop blaming vaccines. I hope that more parents will vaccinate their children. I know lots of parents have many reasons for not vaccinating, and I respect their right to make those decisions. I'm just asking for people to make informed decisions based in science, not fear. The fact is that autism will not kill my daughter, but measles, polio, mumps and even chicken pox CAN kill our children, and used to kill many children not so long ago. I'm 33. I've been blessed to have never seen a death from measles, polio, mumps or chicken pox among my friends or family. With plummeting vaccination rates though, I think this rising generation of children will experience these deaths, mostly because of fearmongering and conspiracy theories about vaccines.

Yay!

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! :)

Oops

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.

Grrrrrrr.

IEP ICK

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.

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.

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?

Photo update

Moving has sucked! We do have a really nice neighbor though who has two kids (4 & 2). I thought she was single, but her husband is actually in med school and gone for a few months with that. They're in their last year, so she'll be gone in May, but it is nice to have a normal neighbor (other than Andie).

Anyways, moving and scholastic calamity aside, here's some of the latest photos. Not much to talk about so I figure the pics will do!