The Day The Tears Showed Up

The Monster House sends love and prayers to Boston

Today, I have a post up on Special Happens, (I'll wait on ya, so you can know what I'm referencing, if you want to click over and read before you continue here.) because I specifically did not want my monsters to see it here. I don't let them watch the coverage in Boston on CNN, and I won't let them read the post I wrote for SH. Yet, as I listen to the monsterlettes play in the other room with #1, I feel the need to write a little more. I'm still... just too raw.

I'm still wondering. And I'm still reflecting. And today...today is the day the tears showed up. As I listen to the monsterlettes, I cry. I cry and I ache for the family that lost their son. I ache for the families that lost their daughters. I have vivid video in my head of the mother, sobbing as she tried to have a press conference, trying to tell the world about her daughter. And the only thing she said that I can remember with clarity is, "This doesn't make any sense!"

She said this through sobs that wracked her body, the anguish apparent, her soul screaming because her baby was taken from her with the type of violence that no one understands. And the tears keep coming.

I'm just a small town Momma with a mouth way too big for my own good. And that's okay. But the truth remains. I am scared for my monsters. I am terrified to know that my monsters are growing up in a world  where children are shot and killed at school, and bombs go off at a family event. I am horrified that I am having to create explanations that my little monsters will understand, for things that even adults don't understand.

Early yesterday morning, by accident, #5 saw coverage of a bomb dog working. He wanted to know what was going on. I had to think fast. So I did. "Well! Did you know that even dogs are superheroes sometimes? There are special dogs with super powers that work with policemen and firemen and other heroes for our country, and they can actually *smell*  bombs or drugs or other bad things and show their human partners where to find the bad stuff! How cool is that! So, that dog you see? He's showing people how he does his job!" #5 was properly awed and half whispered, "Cooooool!"

And I hated every minute of it.  I had to explain a bomb dog to my 7 year old. My seven. year. old. I could go into the inevitable comparisons now, with the "when I was 7, I was only traumatized by the fact that my cousins had all the Strawberry Shortcake figures and I had none!". But I won't. Because the fact of the matter is.. there is no comparison.

I don't know how to deal with this. I just don't. Give me an autism meltdown. Give me a sensory overload. Give me an allergic reaction. Give me a significantly overtired 4 year old that wants to eat ice cream for dinner. Give me a poop-splosion. Give me...anything... instead of having to explain what a bomb dog is to my seven year old son. Granted, he thought this was some nifty televised show and tell.  But that's not the point.

There was another 7 year old. He put it better in four words than I can in four thousand. "No more hurting people". And that's all that needs to be said, though the tears are flowing again. Now, we just need everyone to.... listen to the four words and take them to heart.

Epilepsy Warriors ~ A Force to be Reckoned With!

It is my great pleasure to introduce you to a non-profit foundation dedicated to helping our kids with epilepsy, and their families. Founder and president of The Epilepsy Warriors Foundation, Susan Noble, has tirelessly dedicated her time and effort for more than two years to get this truly vital foundation the respect and recognition it deserves, as well as providing a valuable resource which "addresses the ever growing needs for advocacy and research as well as lift the societal burdens and limitations brought about by epilepsy".

Did you know...

• 2.2 million people in the United States, and more than 65 million people worldwide have epilepsy
• In the U.S. more than 300,000 people who have epilepsy are under the age of 14; more than 500,000 are over the age of 65
• Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all epilepsy related death; 85% of these fatalities occur between ages 20-50

The Epilepsy Warriors Foundation is made up of parents and caregivers of children, teens, young adults, and adults who suffer from seizures, and/or have been diagnosed with Epilepsy, Dravets Syndrome, LGS.

Impressed? So was I! But there's more! The Epilepsy Warriors Foundation is hosting a Bridge of Hope Gala Dinner in Chicago,IL on Saturday, April 20 from 6-1030pm at the Holiday Inn Mart Plaza.The dinner will benefit University of Chicago Comer Children's Hospital, Northwestern Memorial Hospital, Changing the Face of Beauty, and The Epilepsy Warriors Foundation. Funds given to the Epilepsy Warriors will be donated toward an Epilepsy Research Center to be located at University of Chicago Comer Children's Hospital, and to the Health Learning Center at Northwestern Memorial Hospital to have more resources for Epilepsy families and patients.

Jere's a little teaser for you: not only will guests of the Gala get dinner, but they will hear Joey LaRocque, former linebacker for the Chicago Bears, and president of Guardian Helments speaking about epilepsy, there will be video messages from Minnesota Gophers coach Jerry Kill, and CBS 2 Chicago News Anchor, Rob Johnson, a silent auction, and entertainment sure to delight everyone that attends.  It will be an evening that every guest will be talking about for months to come.

If you live in or around the Chicago area and would like to attend the Bridge of Hope Gala Dinner, you can purchase tickets through eventbrite by clicking here. If you don't live near Chicago, but would like to help promote the Gala, donate to The Epilepsy Warriors Foundation, or offer an item for the silent auction, please contact Susan Noble (susan at epilepsywarriors dot org). 

Image and links property of The Epilepsy Warriors Foundation, and used here with permission.

Watch Out for Falling Rumors

Today I found out just how bored people get. And I found out what happens when people get bored and mix it with a little too much curious, and add a dash or twelve of speculation and gossip. It would seem that there are people with nothing better to do than spread vicious rumors about the Monster House. Rumors which, if they were true, would destroy a family -any family- in nothing flat. What a sick and disgusting thing to do. But hey.. that's entertainment, right?

I could be angry, and some part of me is. Very very angry. But more than that, I'm hurt and I'm sad. I'm sad that there was nothing better to do than gossip about my family and cause pain. It must have been a slow TV night. 

So, without giving credibility to the gossip mongers, let me say this. We are all still here. We are all healthy, functioning people. If ever that changes, well, that would be my business and no one else's. And if I ever feel the urge to spread my business from here to kingdom come, rest assured I will rent the first billboard to be seen in these parts, and inform everyone all at once. 

Consider this your warning, gossipers. I'm cranky, I'm stressed, I'm cynical, and I'm loaded for bear. Do not approach my children and pump them for information. Because what you've heard? Are rumors. Which means they know nothing about what you're talking about because.... it's NOT TRUE. And also? If you approach my monsters? It would not be in your best interest. 

So glad we had this little discussion. I'm sure we understand each other very well now. That. Is. All.

Rumors image via google images by sodahead.com

someecards image via google images by topaz93 on pinterest

Confessions of a Non-Conformist

I have a confession. I did not wear blue today. I wore purple. It was clean, I was running late, and it was the first shirt I yanked out of the dryer. And I'm not sorry. I know, I know. Flog me. Shoot me at dawn. Ban me from baking for a week or more. I should be punished. How dare I not wear blue on World Autism Awareness Day?! Blasphemy!!

To be honest, April wears me out. Truly. I'm starting to have a real love/hate relationship with April. On the one hand, I love April because it's Spring and I keep having delusions of impeccable landscaping. And on the other hand, I have this dread. This overwhelming "MUST SHOUT ABOUT AUTISM FROM THE ROOFTOPS OR I'M A BAD PERSON!" dread.

But I decided I'm not going to allow the guilt to get to me this year. I've never been a "Light It Up Blue" kind of girl. I did promote the heck out of the Chili's Light It Up Blue Give Back Event, but that was for donations to help the Autism Council of Utah. This is my state. This is my child that will benefit. I couldn't say no. I wasn't waving banners and screaming, "I heart Autism Speaks!" (Because, I don't. Heart Autism Speaks, that is. I appreciate some of their information. That's it.) I'm not putting a blue bulb in the porch light. I'm not providing pictures of Logan for facebook events - that was part of the deal with the Daddy when I started blogging. I would not use Logan as a poster child in any way, shape, or form, away from the blog.  I'm not having fundraisers for Team Monster House. I do have several friends that participate in these things, and I support them wholeheartedly. But this type of thing is not for us. I don't live in a large area, where if I took 7 monsters to the store all dressed in blue, people would ask questions and provide a golden opportunity for me to wax poetic about ASD. Everyone pretty much knows everyone else here. They're aware, ok? I have a really big mouth. REALLY big. I'm sure they appreciate the reprieve.

I consider myself to be a fairly outspoken advocate for my child, as well as other children with various special needs. I don't need to prove my mettle in April just to feel better about myself. We all know that autism is every day at the Monster House. Short of taking daily video of Logan singing "Da da da da dalalalalalalalalala!" at the top of his lungs every time he hears "I'm Gonna Be (500 Miles)" by The Proclaimers and posting it here, what more am I supposed to do? Video of Logan on the sit 'n' spin every. single. day. in the middle of my kitchen floor for hours at a time? Yeah.. not gonna happen. Sorry 'bout that.

So, bring on the insults. Bring on the guilt. Bring on all the things that you're supposed to say when you encounter a non-conformist, if you must. I can handle it. I may respond with, "Can't we all just get along?!" But what I won't do is engage in a huge debate about why you're right and I'm wrong. Because it just isn't true. Your choices are right for you, and ours are right for us. And guess what? Neither of us are wrong. We're just doing things.. differently. May the force be with you.

oranges and a lime image by google images via hisdancingleg.com

Celebrate World Autism Awareness Day with Caden's Autism Heroes

As part of World Autism Awareness Day, Caden's Autism Heroes on facebook is inviting everyone who is interested to celebrate by posting a picture (or several photos, if you wish) of a loved one with an ASD, or yourself, if you have an ASD . To participate with this event, please visit the page and either post a pic directly or message Caden's Autism Heroes with your picture or story and they will post it for you. Please make sure that if you are posting pictures of a family member or friend that is not yourself or your child, get their permission first! This event is entirely online and will be seen by followers of the page. You are also invited to share autism stories of pre-diagnosis, diagnosis processes, successes, challenges, etc. All that is asked in return is that you share the page and show the world what autism really looks like! This is a great way to share stories and  information in a neutral space, and get support. Go to it, y'all!

There's No Place Like Home, Unless You Have ASD

One year ago tomorrow, CBSnews published an article; What Are the Top Places to Live for People with Autism? The article cites the resource guide provided by Autism Speaks' (hereafter referred to as AS) website, as well as Top Ten Places to Live on the same site.

While I am thrilled that there is such a thing as a resource guide, and a Top Ten available, I was disappointed in the fact that the Top Ten list is part of the AS press release for April 2011 and has not been updated as of today, 4.01.2013. We all know that ASD has been getting much more press, much more visibility, much more recognition in the last two years. And while I don't expect miracles, I would have appreciated a more recent Top Ten.

For families who are willing to do everything, right up to and including moving to another state, getting new jobs, new schools, new providers, and uproot everything familiar for the sake of the potential good the new location has to offer, a 2 year old list just isn't adequate. Don't get me wrong. Autism Speaks has had a lot of impact on the awareness of ASD. But if they're going to keep their "expert opinion", and cutting edge status, don't you think that a current listing would be helpful? But guess what? After doing google searches for longer than I care to admit... I couldn't find anything newer than 2011. Not from CBS, not from LA Times, not from AS, not USNews or WebMD. But all of those sources had something to say in 2011. I'm baffled, to be honest. What made 2011 a red letter year? Especially now, after a phone survey to parents got everyone all het up, and made the numbers of ASD potentially grow from 1 in 88 to 1 in 50. Wouldn't it stand to reason that we need new listings? Makes sense to me...

Now, as far as the AS resource guide, let me tell you - it's a thing of brilliance, constantly added to and revised, not only by those at AS, but by families who live in any given state and use those services. I cannot say enough about it. Hey.. wait. You mean I can click on my state and enter my zipcode and find what I need to know (or the lack thereof) right now? How freakin' cool is that? 18 thumbs up for the resource guide, AS!

Having a child with ASD and other diagnosis' causes parents to constantly reevaluate. Are we in the best place for our monsters? Should we move to upstate New York? Is there some way to get what my child needs medically and for therapy without being more than a million dollars in debt (and if you figure that out, could you please email me? Because we are..more than a mill in debt, that is..)? What can I do more of, at home? How can I rearrange my schedule/methods/perception/ability to better serve my child? Am I doing enough? Am I asking the right questions? Is my child's diagnosis my fault? What more can I do? If I go from sleeping two hours a night to one hour a night, could I get more research time in? Is my child's diet harming or helping?

Sometimes... it's time to take a breather. Sometimes.... even though it's April, and April is sacred because everyone touched by autism is supposed to have a blue porch light and a shiny new bumper sticker that says "I love someone with Autism!" and wear puzzle piece jewelry and change their Facebook profile picture to "Light it up Blue!"... well, sometimes it's time to not do that. Sometimes it's just time to say, I don't need to Light it up Blue. Autism is every day here. And we might move to improve access to resources my child needs. Or we might not, if we can find the resources here. And we might try a different diet for three years, but we might go back to the original if nothing changes after that time. And we won't care what other people say if we eat gluten and casein. Maybe April is a good month for you to just be...you. Because really, if we're being honest, does April change who you are? Or who your child is?

continental US map by google images, via searchroots

parents swinging child by google images, via itriagehealth