SNRG

Special Needs Ryan Gosling, a tutorial.

So I’ve been asked this many times:

“What’s with this Special Needs Ryan Gosling (SNRG) thing and why should I take part?”

Me: because it’s awesome, dammit, and by taking part, by the transitive property of equality (but not recognized in North Carolina), you would be awesome, too.

Then they tell me they’ll get their information somewhere else.

So, I thought I’d go in depth. And by “in depth” I mean I’m going to copy and paste stuff.

First off, SNRG was started by Sunday over at Extreme Parenthood. Her first and second posts went viral. Read that first post. It explains how it started out. In summary, we’ve all seen the Ryan Gosling “Hey Girl” pictures, right? Well, in all of them no one had thought about having Ryan Gosling say wonderful, beautiful things to parents (mostly moms) of special needs kids. No one, until Sunday. And because she’s a giving and sharing soul, she wanted ALL to join in on the fun. So she created SNRG Fridays. Bless her heart.

So what do you need to do? Go to her blog on Wednesdays and follow these easy steps (plagiarized directly from this AMAZING (and not just because I’m mentioned in it) post)

  1. Right click on the photo above and save to your hard drive
  2. Upload to picnik.com or quickmeme.com and add your best “Hey Girl” words.
  3. Write a blog post including your poster and hit publish.
  4. Link up your post with mine which goes live at midnight on Friday.
  5. Visit the other bloggers who have linked up and laugh your ass off.
I want to expound on #2 and #3. Are you a parent of a child or two that has special needs? If some handsome dude was going to whisper ANYTHING in your ear, what would it be? “Take a break?” “I’m going to murder the principal for you?” or “I’ll give you deep pressure…all night…long”.  Look at the ones in the linky lists from the past on these posts.  Or check out any of the ones I have done.
My Unpaid Testimonial of SNRG:
I went searching out a green pasture that had the same kinds of unicorns as me. Ones that could see the hilarious side of autism. Unicorns who aren’t afraid to say “This sucks!” sometimes, while at the same time knowing how lucky they were to be unicorns. I found that through SNRG. Not only did I get to meet Sunday, the mother to two children on the autism spectrum, but I met and was fully accepted into this crazy fold of parents who have children with special needs. I love this because it’s for EVERYONE. It’s not just for parents of children with autism. Or Down syndrome. It’s for any parent that wants to link up and meet new, cool, funny parents who don’t take life any more seriously than is completely necessary. 
Also, since I met these people, this fantastic community, my blog stats have tripled. If that’s not motivation for you, I don’t know what is. Let it out, join us. ONE OF US ONE OF US ONE OF US. 
Yeah, I just went all sorts of cult on you.
And because I live what I preach (mostly) here’s my SNRG: 
If you don’t blog, no worries, go to find new fun people to follow. I’m serious. My favorite blogs link there.
shameless self promotion · SNRG

Oh Effing F. Ultimate Blog Party Time

So this year for the Ultimate Blog Party, you actually have to write a post about it to introduce yourself to the other party-goers, and thereby give yourself away as someone who actually attends blog parties to get readers.

Like coming out of some sort of closet, really. It’s like I’m officially saying, “LOVE ME! LOVE ME! pretend I’m not just a little scary and  LOVE ME!” And I don’t want to say that. I mean, I do, because I’m co-dependent, but I don’t, because I want to appear like I don’t give a damn what you think. 

If you’re just looking for a summary, per UBP guidelines, scroll down. 

Like my friend, JillSmo. Holy crap. I’m in love with her in every way. She’s like she’s the honey badger of blogging (over at Yeah, Good Times). Right now on her blog, she’s doing a giveaway. And not one of those giveaways to get more followers, ad revenue (she doesn’t have ads) or for any sort of charitable cause. She’s doing it because she got drunk at a PTA fundraiser (that sentence alone makes me laugh until I pee a little) and bid for a bunch of crap she didn’t remember afterwards and now has stuff she doesn’t need. She’s giving away the stuff, but in order to enter, you have to write a haiku. Who thinks of this crap? Geniuses do.  I deeply respect anyone that does ANYTHING just for their own entertainment. Not the, “follow my blog and then I’ll follow yours and we can hold hands and brush each other’s hair and hug and jump” that I’ve employed in an effort to get people to read what I write.

Because I actually DO care that people read. Because it IS a little bit like crack when you comment. When my little stat ticker goes higher than it has before. In the last three months, I’ve tripled my daily viewers.  I’m pretty sure it’s mostly because Sunday pimped me out on her blog, but I’d like to believe it’s because what I say matters. Or doesn’t matter, and at least makes you laugh from time to time.

Or feel just a little bit better about the manner in which you live your life. You shower at least every other day, yes? Good for you.

Either way, I love to write. Love it. It’s a great outlet for me. But I’m so freaking self-serving, that the only thing that motivates me to write is that people actually read. I wish I was Jillsmo. She writes because she’s awesome at it and funny and she’s the honey badger.

READ THIS FOR A SUMMARY: 

Hi. I’m Lexi. I’m passive-aggressive, sleep-deprived, trying to be co-dependent while at the same time narcissistic, and I smell and frequently forget to shave the inner part of my right leg.  I’m listed under “Special Needs Blogs” because I have an eight-year-old son with autism and an almost-two-year-old daughter with Down syndrome. But this blog has multiple personalities. I can’t figure it out. Some days I’m only an autism blog. Other days it’s Down syndrome. Other days it’s the rants of an angrybatshitcrazy mother. Oh, and despite all of this swearing, I’m a good and faithful Mormon. Okay, faithful. I’m also into politics, but I don’t touch on those much here because I’m afraid of the phone call I’d get from my sister. Going to hell and whatnot in so many dimensions. I also really like crafts, but as of late, only do ones that I think are hilarious and then never send them to the places I intend. Like cross-stitching with swears and gangsta rap.

Here’s a picture I drew a long time ago of my family. If I were to draw it again, Casey would be almost as tall as Lance. He’s a moose. Peyton is still quite angry. 

Here’s a picture the Lord drew of my family:

and here are my thoughts on hell (and, as always, linking up with Adventures in Extreme Parenthood though this might not quite fit as a “Special Needs” Ryan Gosling meme. Dammit. I just realized that. Oh well, too late now.):

autism · SNRG

Autism Freaking Awareness Month.

Yay. It’s April. It’s Autism Awareness Month, and to celebrate, me and the five million other people who blog about autism have set out to piss each other the hell off. Or at least, some think we do.

Ughghggg.

This is what autism looks like. So handsome.

It’s tough. I think we go into this “community” thinking that because our children have the same diagnoses, we are ALL the same. It’s totally ironic. We shout from the rooftops about how great it is to be different, but the minute someone thinks differently from us, to hell with them! (This isn’t just an autism community thing. It happens everywhere.)

Just like autism is a spectrum, parenting a child with autism is a spectrum. We approach it differently.  We have our own beliefs as to where it came from, how to treat it, and how to help others.  And that’s good.  I have my own beliefs. I have my own damn blog. You’re here. You’re reading it.  These are MY views. They are not that of the autism parent community and definitely not shared by people who HAVE autism themselves. 

Where it Comes From:

This question is huge. And it’s a huge source of fighting within the community. Despite all of the research, the vaccine debate rears its ugly head in too much of the source-of-autism discussions. I do not believe that vaccines CAUSED Casey’s autism. I think this jump in numbers of autism cases sort of lends itself to “proof” that vaccines don’t cause autism. If they did, this anti-vax movement would have AT THE VERY LEAST slowed the prevalence of autism. It has not.

I do believe that better diagnostic criteria can be attributed to the rise. It doesn’t nearly explain ALL of it though. If so, there would be a HUGE subset of adults who are autistic and were never diagnosed. It’s called the “Hidden Hoard” theory. Granted, I think there are A LOT of people who have high-functioning autism who were never diagnosed, but that still doesn’t account for all of those who went undiagnosed.

But what it really comes down to is that we just. don’t. know.  Which makes research so vital.

Treating Autism

There are the Mommy Warriors. The Jenny McCarthyers, who say you can “cure” autism through diet, cleanses of different sorts, vitamins, etc.  There are the behaviorists. These believe that the way to “cure” or treat autism is through a regimented program (ABA and the like) that is akin to a full-time job for kids on the spectrum.  There are those who don’t treat it at all. They think it’s completely natural. And then there is EVERYTHING in between.

I get comments from people ALL OF THE TIME about how it’s wrong that I medicate Casey. Their child does not have the same autism my child has. If your child can be “cured” through Music Therapy, your child does not have the same autism.  I treat my kid based on my own research, his personality, my personality, and his medical and behavioral needs. I personally do not believe that he will be “cured” and I think this “curing” autism speak is dangerous. Not all kids on the spectrum respond to dietary changes (Casey didn’t), not all kids need or can do 40 hours a week of ABA.  You treat your child based on their needs. Don’t compare your child to others and please, for the love, do not tell another parent that what they are doing is wrong just because it’s not how YOU would do it. If they are asking for your opinion or help, that’s one thing. But to seek out parents to preach to is something else completely.

Helping Others 

If we all believed staunchly that research was key, we’d all go to every Autism Speaks walk and hold hands and sing. But we don’t.  I understand the criticisms of Autism Speaks. Too much money spent on ads you don’t agree with, too much money spent on research, not enough spent on services towards individual families.  Many have criticized the amount of money that the head of Autism Speaks makes ($391,892; the highest paid employee of Autism Speaks, the Chief Science Officer, makes $456,420 ). It’s a lot of damn money. It does make me cringe a little when I think of how hard I worked to raise the little money I did for the Autism Walk the year after Casey was diagnosed, only to have it go to make someone rich. But then I looked into it. Check out the salaries of the top paid people at these organizations:

American Cancer Society: $2,222,000
American Red Cross: $1,000,000
Susan G. Komen: $481,000
United Way: $864,000
(figures are from http://www.charitywatch.com, verified through BBB Charities)

These non-profits are run JUST like other businesses. In order to grow the charities, they need to compete; in order to compete, they need to have CEO’s who know what they are doing. It may not be right, but it’s the way it is. If you don’t like it, don’t support them.

I do believe that Autism Speaks (and the other organizations listed above) does a lot of good. Autism Speaks is educating people. They are raising awareness. They are giving families who are newly diagnosed some direction. The reality is that they can’t help every family with a child with Autism.  There are just TOO many of us.  They should have more on their staff who have autism themselves. I think it would prevent some of the outrage that has come over some of their ad campaigns and terminology. Regardless, they aren’t going to be able to make everyone happy.

There are many fantastic organizations that deal mostly in research. Research is important. It will help future generations in better diagnostics and treating. I particularly like http://www.autismsciencefoundation.org/. If you believe in the importance of good research, this is a great organization to give to.

For Autism Awareness Month, I’m asking the same thing I asked last year: for your help. Specifically, to help parents YOU KNOW who have children with autism.  Call a mother of a child with autism and ask her if you can take her kid(s) for a couple of hours. Respite is what I think we, as parents, need most. And it’s really one of the hardest things to get. With Abby, I got respite just because she has an extra chromosome. She got the funding for it right away. For parents of children with autism, even here in Virginia, it’s TERRIBLY tough to get. I looked into it with Casey. The waiting list is 5 years. He’s been on the waiting list for respite services in Washington State since he was 18 months old.  Autism is TOUGH, there is very little relief. We don’t sleep. We deal with more stress than I think others would even believe.  

If you don’t have the capacity for whatever reason to babysit a child with autism, send their parents a check. Tell them to get a babysitter. Or even just get a movie and treats to watch after they’ve sedated their child for the night. But not us. Lance and I are good. We get a lot of help from the wonderful people around us. We have our nanny coming. So not us. You have to know someone else who has a child with Autism. If you do not, email me, I’ll send you an address. Do something, then tell me.  I’d LOVE to hear what you did. 

Back to my original thought. Autism is a spectrum. The ways we approach it and deal with it are going to be as different as our children are. As we are. And that’s okay. If you disagree with me, that’s totally fine! In fact, I welcome it! It’s how I learn about other points of view. It’s how I see things I haven’t seen. If nothing else, it gives me someone to fight with.

My husband won’t fight with me.

But remember, not everyone who speaks their mind wants to be fought with. Sometimes they’re just airing things out as a way of dealing with them. Working through them. My views on autism have changed a lot in the last seven years. I’m still learning. Be nice to the jerks who aren’t as awesome as you.

And, I’m a little late, but I’m linking up over at Adventures In Extreme Parenthood, if it’s not too late. If it is, Sunday, I will murder you in your sleep. Love.