The Naked Truth: The (non) Aspergers Fall-out

So, I haven't done one of these posts in awhile, but as this week has been fairly truth-like I figured it's time to do some updating. The other day Papa Cupcake came home from work and told me how the Evil World wants to change the way Autism is diagnosed. The testing and the types that can be classified under the Autism umbrella, are going to change. An excellent post and personal story on this can be found at Amy's Awesome Nest.

The change upsets me as it does many parents of Aspergers kids. What is being proposed is that Aspergers no longer be classified as Autism. Great my kid (who was Aspergers and then not) doesn't have Autism. You'd think that would be a good thing wouldn't you?

But it's not.

What it means is that all the kids who receive services under the ASD (Autism Spectrum Disorder) Aspergers diagnosis will no longer be eligible. This affects 60% of these kids.

60%


Stop for a second and think about what that would mean to you if you were an Aspergers parent.


No accommodations for behavioral issues, learning problems, and many other various issues these kids face every single day and need services for. I could feel happy that my kid won't lose services, because just this week we finally, after several years of trying, have gotten Vanilla off a 504 plan and onto an IEP at school. For some parents that's bad news, but for us, it's good because it means they are accepting that he needs to learn differently, and they need to accommodate him, so he can be a successful student. Yes, he's brilliant, off the charts smart, but sometimes that comes with downfalls, many of which I've written about before.


If these proposed changes in the way diagnosing and classify Autism related disorders do take effect, I'm worried. Yes, my son is no longer technically considered Aspergers. But as many parents will tell you, the child slides on and off the scale their entire life, and often can test on one week and off the next.


Do I believe Vanilla is Aspergers? Yes, I do. Both Papa Cupcake and I can't wait to get to Seattle and look at what we can do to further investigate what needs to be done to help him. But the double edged sword is if we do get him classified Aspergers, if/when these changes take place, it won't mean anything for helping him get services. Services he needs, services that can benefit his entire life.


Please, I urge you to take a minute and read this petition for change. If you think these new rules are wrong, sign the petition. Make a difference to the lives of kids like Jakes and Vanilla.


If we don't speak up for these kids, then who will?

Wordless Wednesday: Louisville Science Center

On Saturday we spent the day at the Louisville Science Center (after a fantastic meal at The Old Spaghetti Factory downtown). If you've never been here, or to any kids science musuem, it's highly enjoyable for children of all ages (even big ones.)

Slideshow design generated with Smilebox

One Sick Sprinkles

You can tell when Sprinkles is sick. She ends up looking a lot like this:

We've had a rough five days, a trip to the ER, a trip to the pediatrician, and lots of tears. Hopefully, she's on the mend.

Hopefully.

Make today a Friday

I've recently come to the conclusion that I need more of something in life, and by something I mean a religious something. All my life, or rather till I turned 18 (and plus a few years), I've been Catholic. Well, I've been raised Catholic, not very strictly by many standards, but with a weekly partaking of religion all through my childhood at any rate. As an adult, I've gone through various phases including religion in my life. I joined an online Catholic mothers group, started saying the rosary everyday, even attended a conference.

But it never felt real to me for very long. I started having philosophical discussions in my head. I started doubting that what I was supposed to be learning, and had learned my entire life, was something I could actually believe in.

Religion is a very complex, and often complicated, thing for me. I have come to understand that just because I was raised in one thing it doesn't mean that it is the right fit for me. It is okay to stand up and say, wait, I don't know if I believe that or not. I want to make my own choices. So far, I have chosen to waver between believing and not believing.

There is another issue that plays into what to do about what I believe, my children. Both children have, in essence, been baptized. My son in the Catholic Church as an infant, and my daughter was blessed by the nannies in the orphanage at a temple in Taipei before we met her. That has been good enough for us. My husband and I have wavered about baptizing our daughter in the American, Catholic sense of the word, but four years later, we still haven't. We've talked about it but both my husband and myself have questions about the religion we were raised with.

I can't, and won't, speak for him, because this is about my own journey to something, but I do want to find a place where I can learn. I am a learner by nature. I can get captivated, and while I hate to admit it, sometimes easily influenced by others, but it's time at 34 years old to find something to believe in. Not only for me, but also for my kids, who are at the age where the people we meet, and especially during our time here in the south - where religion is a daily part of life - they are going to start to wonder what they should be believing in.

So, I recently started reading Every Day a Friday by Joel Osteen after seeing an interview with him on Oprah's Next Chapter. I was captivated by his positivity. After spending some time on his website, I purchased his book. I'm enjoying what I'm reading. Of course it's heavy on the religious aspect, he is a preacher after all, but I'm finding there are lots of life lessons to take away from the book, even if I don't follow his religion.

Live every day as if it was a Friday, every day in happiness, don't let other's steal your power to be happy.

Powerful words indeed.

That's what this hopefully weekly journey will be about over here. Figuring out through reading and exploring and learning about God and myself and finding a place I'm comfortable. In a few months we will trek half way across the US to our new home in Seattle. Once we are there I'd like to find a church, find a religious family, find a place that can help me as I begin to learn about all the things that are in store for my life.

Maybe some of you will journey with me...

Those who have come before me

After yesterdays post about trying to come up with a post, I thought I'd go around and see who is actually still blogging. I thought it might be fun to take note of my past favorite blogs and see when their last post was dated.

The results were a bit shocking.

I used to love Cinnamon and Honey written by the ever talented entertainment writer Robin. She always talked about music, and she used to feature a lot of artists on her blog as well. She was the creator of Monday's Muse, of which I used to participate on occasion. I say used to...

Her last entry on the blog? August 8, 2011. That's just sad. I understand she has some good things the past two years keeping her very busy, but still, I miss adding a little Cinnamon and Honey to my day.

Then there was TheOneSFD. He had several incarnations of his blog. He was (is still, I assume) Canadian. There was no doubt if you wandered over to SFD you were going to get told things like they were. No minced words. Peruse his In-Laws section, the stories there are legendary.

His last blog entry? November 13, 2011. He had some serious job issues standing in the way of spending time with his family, and blogging no longer took any priority. Understandable, 100%. But still, he was always good for a quick comeback or snarky remark (and I say that in the most flattering way.)

There's even more....

Anyone remember the Dumbass family? Captain Dumbass (which to this day, just the name makes me smile), another Canadian, over at Us and Them, was a perennial favorite. I started reading his blog not long after it started during his year long sojourn as a stay at home dad. Top-notch funny. He would make his then unable to read children hold funny signs saying things like "Will Pee For M&M's" and his ever-patient wife let him draw the Death Star on her pregnant belly.

Fantastic writer, funny guy and now pretty much missing from the internet altogether now that he does things like go to work everyday (the nerve!). His last blog post? November 9, 2011. Very sad indeed.

Most recently we lost Gina over at My Own Brand of Crazy. Always real, always funny, and her stories of the Bonehead Brothers are things of legend (I do actually believe they are listed in the modern online Urban Dictionary somewhere. For real.) I don't know exactly why she stopped blogging, her last entry is dated December 18, 2011. One of her sons is getting married this spring, but still that's hardly an excuse I would think!

There are others that have disappeared, the list goes on including the moms I used to know - Casey, Mrs. Bear and Teri. They've all vanished from the virtual world into the real one. A sad but true fact.

Some people still write, including Amy, Pearl, Blueviolet and Crash, and they are good. Clark Kent is still writing too, but he's gone more newspaper articles, than daily life funnies. But it isn't the same to sit down with my morning coffee and do a little light reading.

It's missing something. It's missing lots of somethings.

Maybe someday they will all come back.

The disappearance

I used to be good at sitting down and writing a post. Sometimes I'd have  four or five all lined up and waiting and I would be bursting to hit publish all at once because they were so interesting, I couldn't wait to share them.

Now my posts come to me when I'm lying in bed attempting to fall asleep. Some of them are brilliant and some are crap, but either way, by morning I can't remember them. I've placed paper and pen next to my bed. That doesn't help much because it's hard to write in the pitch black of night. The notes are mostly legible, as I seem to have a gift for writing in the dark, but the thoughts that seemed so great in the night don't always translate so well come morning.

I write down lots of thoughts throughout the day about this and that, but when it comes time to sit down and write (and I have at least written about this affliction many, many times), nothing really comes. And what does come I scoff at and toss out.

I'm getting pretty tired of myself. I'm getting pretty tired of myself not having inspiration. Or having inspiration and not being able to make the inspiration into something great.

My 'view' is uninspiring.
My head (and house) is cluttered.
My thoughts are both disjointed and run-on at best.

I need a reset button (or a trip to the spa; which by the way I've never had, so you know, I'm totally due!)

One of my items I thought of last night was about change. As you know I'm always changing something, whether it's furniture or the design of the blog, because I just like things to keep evolving, keep moving, keep being fresh. I see something and I get an impulse and want to create something. So I do. Ten days later, I change it to something else.

I don't know if maybe blogging has just lost it's fun for me, so I'm inventing ways to keep myself interested, or that it's just the blogs I used to find inspiration from have long since moved off the internet. When I visit sites I used to adore, the last post was from over a year ago, if the blog itself hasn't disappeared altogether.

If you know a good blog or site that gives you inspiration, care to share it with me?

Review: The House of the Wind

The House of the Wind by Titanie Hardie combines two stories in one place. One story is about Maddie, a present day young human-rights lawyer in San Francisco dealing with a tragic loss and the other is about Mia, a young woman living in 1347 in a Tuscan villa. The novel hopes to combine the two stories by connecting them to the mysterious woman who enters Mia's life and becomes a part of the legend of the villa hundreds of years later.

The true test of this book is the alternating views of the story, between modern day San Francisco and Tuscany, Italy in the 1300’s. There are two stories in this book, and I thought only one was  done well.

While the historical part of the novel had a slightly less-than-plausible aspect, it was nevertheless enjoyable. I liked coming to those chapters and hearing from Mia’s point of view.

The modern day character of Maddie I found far less enjoyable. I didn’t understand where the story was going, nor did I find a compelling connection bringing the two stories together. Half-way through the book Maddie has only just reached Italy – by which the back cover tells us the book is about two stories hundreds of years apart that become connected -  and when they finally connect, I'd already lost interest in Maddie's story. I think as two separate novels the book might have worked, though the modern day story needed a lot more meat to want me to pluck it off the shelf. 

Overall, the historical aspect of the book peaked my interest, but on the whole the book fell flat and left me unsatisfied. If you want to discover for yourself if this book might be for you, The House of Wind will be available in March at major retailers.

I was provided with a copy of this book to complete my review. The opinion expressed is my own.

Vanilla turns Double Digits

The dreaded Double Digits have arrived for my little Vanilla. Ten years of flashbacks:

From under the covers

I have a cold. A big bad nasty cold. If you came by my house you'd find me with these 

and I'll probably be under this

I might get up at some point for some of this

and possibly watch this.

But when you have a big nasty cold, you have to do what you have to do.

Photo credits: www.klennex.com, www.roomandboard.com, www.drpepper.com, www.idmb.com

Fragments on Friday: Music to make you smile

It's Friday so that means it's time for another round of Friday Fragments. Woohoo! It's nice of Mrs. 4444 over at Half Past Kissin Time to host all of us crazies considering we can't even form coherent thoughts.

Let's jump right in!

On my awesome adoption group on Facebook, Taiwan R.O.C.k's, someone shared a link to traditional Chinese children's music. It is SO stinkin' cute. You should really check it out and tell me this video doesn't just make you smile!? We bought the album straight away and are loving it.





Adorable!

Believe it or not I'm still trying to read this book. Two years and counting. It's really, really good as I've said many times before. It's not even that it's a particularly long book being under 450 pages. Still, I can't seem to sit down and finish it.

I ordered a Panda Express Chinese New Year kit and it finally came this week. Basically it's a dvd with a long commercial for Panda Express, a couple activity worksheets and a ton of coupons that double as bookmarks with the Chinese zodiac on the back (I'm a Snake by the way). The biggest problem is I have about 30 (because they were meant for classroom teachers though anyone was allowed to order them). The nearest and ONLY Panda Express in Kentucky is in the student center at the University of Kentucky. In Louisville. So if anyone wants a free kids meal with the purchase of any 2-entree plate coupon, let me know!

We are getting Chinese food tonight. Long noodles for health, egg rolls for prosperity. Yum.

The other day I went to unbutton a brand new sweater from Land's End and the button snapped in half. Nice. Now I have to pay to return it. I really dislike that we don't have a Sears that has a Land's End. Actually, not that I ever shop at Sears but just having a Sears within an hour would work for me. Just so I could say I had one.

Since when did postage get so expensive?? Yeesh. I paid $9.50 to return something to LL Bean last week! It wasn't even in a box!

My kids and I have been watching 19 Kids and Counting on TLC. Have you ever watched it? It's really interesting, not just the aspect of managing that many kids, but seeing that the kids are all well-behaved, respectful kids. Totally blows my mind! Jim-Bob and Michelle are welcome to come parent for an afternoon at my house anytime!

I clean off my desk once a week because it gets so cluttered with junk. I organize and re-order, and within a day it's right back to being stuffed with books, and papers, and notebooks, random shirts, a sock monkey...make that two sock monkeys since Sprinkles brought in the one that used to be in the car. It's really getting kind of ridiculous.

I've also been watching Weeds. I know from 19 Kids and Counting to the very foul mouthed (yet very funny) Weeds. I'm interesting, I know. But I'd love it if Lionsgate Entertainment, who makes the DVD's would actually pay attention. Every SINGLE Season 4 dvd 2 is scratched. As in Does Not Work. I've gone through three purchases and returns because every single one has been damaged. Hello! You can't stack dvd's half on top of each other like this:

You can not tell me I am the only person on the planet who's having this problem. I've purchased from two different places thinking it was a fluke.

It's not.
Fix it.

Sprinkles got a new bed this weekend. She had been sleeping on the de-bunked bunk bed borrowed from Vanilla, but now everyone has their own beds and is very, very happy. The best part? It'll last her through college, yay! Which is one reason is if we are referred a child who still sleeps in a crib, I'm going with this one:

Gorgeous, Credit Here

It goes from crib, to toddler bed, to full size. One bed, 18 years. Perfecto.

This week I've put on quite a variety of dinners. In fact we've been around the world. Mexico, Sweden, Belgium, China (tonight) and tomorrow, Italy. Who says you need a passport?

Well, you really do, but this is a cheaper way to travel.

That's all the fragments for today. Stop by Mrs. 4444 and see who else is fragmenting at Half Past Kissin Time!