Pictures of...us!

Because I've been awful at keeping up, here's what's been going on the last few weeks with us:

Celebrated at Jungle Jim's.

Munchkin started soccer.

Buddy Boy started baseball.

We toured a local news station and enjoyed free food afterwards.

Other stuff:

• We're all anxious for summer to start, and wish that Dad worked at a school so he could get a summer break like the rest of us!  
• Buddy Boy lost his 2nd tooth, thank goodness, because he's got four other loose ones!
• We did 2 news interviews with another local station (those kids were stars and did great!)
• We did a lot of autism awareness spreading (does that even make sense?).
• 2 trips to Home Depot to do kids' workshops
• Prepped a lot of the garden...the peas are looking great and the tomatoes are currently being hardened to get ready for transplant.  Yeah, we've got spring fever!

United States of Autism Premiere

The documentary, The United States of Autism, has been premiering all over the nation, and has received great reviews all over as well.  How awesome that we've had a chance to be a part of it!!

The first night it premiered was at the beginning of April in NYC.  The theater sold out!

It came to our area last Thursday, April 18, and it was so fun to get to see it.

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Our family's sweet friend Margie took the above pictures for us.  She also bought tickets to support us.  She promoted the event like crazy to help as well.  Oh yeah, and she's the ENTIRE reason we were even given the opportunity to be in the film.  She was the one who told me about the applications being accepted for families.  So you know, we pretty much owe all of this to her.  Thank you Margie!!! :-)

Here she is posing with us.  

I feel like I owe thanks to so many, and I'm not sure the best way to do it.  I am planning to send personal thank-you notes, but there were so many who were supportive who I don't personally know and cannot properly thank.  So...I'll say THANK YOU here.  Thank you for supporting our family on this special night; THANK YOU for supporting The Tommy Foundation and those who were involved in making the film.  THANK YOU for caring about autism and about the amazing, wonderful individuals all around us who deal with autism on a daily basis.

I've had a lot of people ask...YES, the film will be out on DVD/Blu Ray in the fall.  Can't wait!! 

Autism Insurance will NOT happen this year...again

I am EXTREMELY hurt and disappointed that SB55 did not even come close to passing.  This bill was meant to mandate health insurance coverage for kids with autism in the state of Utah.  You know, autism, the health condition that has been PROVEN to have a high success rate of being treated with certain therapies?  You know, the condition that Utah has the HIGHEST RATE OF  IN THE NATION?

Insurance lobbyists say that it'll hike up everyone's insurance rates to unbelievable heights.  INSURANCE LOBBYISTS, people!!!  

I'm pretty sure I don't need to go into the details of why I, and millions of other Americans, are 100% convinced of the evils of insurance lobbyists.  (and if I do, please let me know, and I'll gladly do it!)  Of course, all the lobbyists are doing is using scare tactics.  

Did you know that we (the supporters of health insurance coverage for our kids, since they are people too) have data from MANY of the other 32 states that have insurance coverage showing that insurance rates will NOT skyrocket?  The average cost?  Oh, you might look at a 32 cents per member per month raise.  

OH NO...32 WHOLE CENTS A MONTH???  Just so some measly 18,500+ kids can have insurance?  NO WAY!!  I'm not paying that!  Especially when autism isn't a real condition!!  (Didn't you know?  Kids with autism are simply brats who aren't disciplined.  Their cold-hearted mothers gave them the "condition).  Why, that's highway robbery!  Who do these autism parents think they are?  Just more liberals looking for a handout, right?  (And yes, I've been called just that by some)

I mean, after all, I MUST be looking for a handout... I only work a part time job while the kids are at school and also take on as many odd jobs a month as I can to make a little extra money.  I only drive my son over 1,300 miles each month just to get him to and from his special needs school.  I don't even GET my son treatment...obviously I don't need it!  (Or is it that I feel I can't make the choice to send him to therapy if the cost will cause me to lose my home?)  

I am, by that description, nothing but a lazy liberal...looking for a handout. Unwilling to work to provide for my family, but more than happy to sit on my behind doing nothing and expecting assistance from the government.  Right?  

To see video of our family's reaction to the bill not passing, go here: 

You know what?  As ticked off as I am now, it's really truly going to be okay.  You know why?  Because this lazy liberal mother is going to continue to educate herself on any/all treatments that can be done at home.  Because this asking-for-a-handout family is going to continue to make any/all sacrifices we can to provide each other with opportunities for growth and improvement.  Because I will continue looking for a 2nd and 3rd job that I can work around our family schedule (because I ain't sending my kids to daycare) so that we can afford to care for our son and our daughter.  It will be okay because I will NEVER stop being an advocate for my son...and not just a political advocate.  I will never stop being his mother.  

Believe me.  I will NEVER sit on my behind waiting for a "handout".  I will spend every waking hour working, striving, and providing.  

Autism Perspective Evolved

Evelyn here.

It's been almost two years ago since we were blessed with the company of the filming crew from the United States of Autism documentary.  As I read the updates on production, I can't help but go back to that day, to go over what I said and/or didn't say, and to worry that perhaps I didn't show myself and my family in the best light.

Although, I suppose a documentary isn't about giving people their best side, it's about showing people the whole picture, right?

Anyway, there is one moment that comes back to haunt me. Partially because I worry what other will think when they see the film, but mostly because my opinion on something very particular has....evolved, if you will.

I'm not going to go into details about anything I did or said the day of filming, but I will share with you an opinion I had back then...I am a Mormon, and as such, I believe in the Resurrection.  I believe that one day our bodies and spirits, if separated, will be reunited and that our bodies will be perfected.

My opinion two years ago was that one day my sweet little Buddy Boy would be resurrected, and that he would, too, be perfected, and that thought brought me hope.

I'm horrified that I ever looked at it that way, and I beg my son's forgiveness now.

Who am I to say that HE is the one in need of "perfection", in need of fixing?  What in the world possessed me to believe that hope couldn't possibly come UNTIL that day?

As I watch my son struggle with every day things, things that you and I think are so completely simple, I am amazed.  I am amazed at his dedication to work, work, and work some more to do the things that we as a society consider "appropriate", or "normal".  I am humbled by his effort to please me and make me proud.  I am touched by his moments of success and achievement.

I realize that my son is so PERFECTLY....HIM.  He's just who he is supposed to be, and he's so uniquely...HIMSELF!  People say to me all the time, "I believe God sent Buddy Boy to you because you are strong, capable, and an individual who can love and support him in his challenges."  How wrong they are.  I realize that he wasn't sent to me because I'm an incredible mom and he needs someone like me to love him.  Perhaps he was sent to me because HE is such an incredible son and I am the one who needs someone like HIM to love ME.  To teach ME.  Perhaps it is me who will be forever changed and "fixed" on that great day.  Perhaps perfection is simply more of an awakening, of a more open love and acceptance of all those around us, whether they "fit in" or not.  We all know that Christ certainly never fit in, and it didn't make Him any less perfect...


I'm not going to pretend; I still think autism SUCKS!  I still hate seeing the frustration and overload that is experienced on a regular basis.  I hate having to change diapers more than 5 years after giving birth to my youngest.  Maybe this is a perfect example of how much more acceptance I need; who knows?  In the meantime, I will enjoy being able to love, support, and appreciate my son more fully now, as he is...in all his wonderful, Buddy Boy Glory.

Happy Autism Awareness Month!

So, April is Autism Awareness Month.  More specifically, April 2 is World Autism Awareness Day.  Blue has become the color associated with this day.  I don't typically expect people outside of the Autism community to do much about/with that information, but of course, it's a big deal in our house.

So imagine my surprise to find this beautiful basket outside our door on the morning of April 2.  I (incorrectly) assumed it was from another "Autism Mom", but it was not.  What a sweet friend, huh?  Turns out these do-gooders took baskets to at least 2 other families in the neighborhood as well!!

We may not live in a fancy neighborhood, or in an expensive one, but we really have some fantastic neighbors (with the exception of our next-door ones, ha ha!)

Autism and Autism Moms

I love these:

United States of Autism Music Video

Temple Grandin and Autism

Thursday I took a day off work and went to Buddy Boy's school to meet a very special someone...named Temple Grandin.

Before you say "Who's Temple Grandin?" (because that just might tick me off), let me tell you a little about her.

Temple Grandin has Autism.

She is the author of at least half a dozen books, her most recent one being "The Way I See It"

(Photo)

She is the subject of a recent movie, Temple Grandin - The HBO Movie, 

which just happened to win a bunch of  Emmy awards.

She has achieved what many didn't believe someone on the Autism Spectrum could achieve.  She leads the way for thousands of families, bringing hope to so many. 

THAT is who was at Buddy Boy's school on Thursday.  And it was fantastic meeting her and being able to talk with her.  She had a lot of very blunt, but incredibly helpful advice for all parents there, and I've already made changes to how we do some things with Buddy Boy as a result. 

These are a couple of pictures of her before the meeting actually began.  I also made video, but it was with my little phone and unfortunately, you can't really hear anything she's saying.  SOO, I'm going to borrow this video that the gal sitting next to me made.  It just happens to be the same thing that I had recorded, only The Autie Project made it MUCH better than I ever could have.

Top Five Reasons You Should NEVER Piss Off An Autism Mom

I came across this list of the Top 5 Reasons You Should Never Piss Off an Autism Mom.  I see a lot of fun write ups like this all the time, but I’ve NEVER found one that I could relate to so completely!  It’s hilarious and sadly, so, so true!  I’ve edited out some of the cussing just because I don’t want to offend anyone, but if you’d like to read the original post, you can do so HERE. (The words that are italicized are the only edits I made)

Enjoy!

Top Five Reasons You Should Never Piss Off An Autism Mom

We’ve all been there.  Every autism mom has had at least one encounter with some insensitive punk who insulted our children or criticized our parenting.  It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.
Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge butthole they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.
Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made.  Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that witch in the bookstore deserved it!)
These people who attack us are horrible because they have no empathy.  They’re shallow people who probably lead miserable lives devoid of depth and meaning.  They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.
Top Five Reasons You Should Never Piss Off an Autism Mom
Five.  We’re Already on the Defensive
What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No kidding, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No? NO?  I didn’t think so…
In other words, we have experience with buttholes like you.
Four.  We Are Not Socially Well-Adjusted
We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.
Three. We Know How to Fight
Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?
Two.  We’re Already Angry
Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at god or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?
One. We’re Sleep Deprived
Some of us haven’t had a good night’s sleep in years. Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

Autism and more

June 30th,  me and Eve had our 11th anniversary.   To celebrate we went as a family to Trafalga, and for lunch at KFC.   Whenever we go anywhere we try to take precaution about what to do if Buddy Boy has a meltdown.  It was 30 min away from home.  A lot of times one of us takes Buddy Boy in the car until he calms down, but it was a very hot day, and couldn't sit in the car.  We packed food and juice and an extra diaper, and headed out early to avoid the crowd.  By the time we arrived it was already hot, and crowded.  Buddy Boy started with a good attitude and was okay waiting for a little in line without causing a scene.  He was so excited to go on the rides and while on the rides was having the time of his life.  After one hour it was more crowded, and very hot and Buddy Boy wanted to still have fun but with no one there to interrupt, or make him have to wait in line.  After the first hour he started to have meltdowns, so we went to lunch.  Whenever we take him out to eat we try to go somewhere that is not very crowded,  unfortunately this time KFC was crowded, and a kid sat down at a table next to ours and this caused another meltdown.   We decided to go back for some more torture, and meltdowns persisted.   One time I turned my eye on him for only a second and he ran up to a toddler and shoved him down to the ground.  It was embarrassing explaining it to the tot's mother. We were all exhausted and came home and took a nap.   Buddy boy is a generally happy boy.  While he is home he finds things to entertain him, and very seldom has a meltdown while we are home.  Whenever there is the time to go somewhere, library, gas station, grocery store, park, or any place in general with people, I think, "should I take Buddy Boy, he will probably be miserable, and there is a 50% chance he will cause some sort of a scene."  But then the thought comes to my mind that he needs to experience the world and so most of the time I take him.  Sometimes he does great, and others not so great.  When taking him places he gets very excited to go and wants to explore the world.  The only problem is it has to be under guide lines, and conditions.  At the store he used to want to run up and down and touch everything, and play with everything.  He has since learned he cannot do that.  As Buddy Boy continues to grow, hopefully he will learn some more social rules of how society works, and hopefully I will continue to take him with me to "experience the world."   ~Clay

This one he is at a park and there was some animals to pet.

United States of Autism Documentary

The United States of Autism is going to begin filming their documentary by the same name starting this summer....for those who don't know, I'm making the official announcement:  our family is going to be one of those that is filmed for this!

After reading the list of all of the families that were chosen, I have to admit, I'm surprised we were chosen.  There are so many AMAZING families out there that are suffering so much, and working so hard.  I feel like I haven't done half of what they have.  But I suppose that's Mother guilt talking, right?  RIGHT?

 Either way, it's going to be an amazing film.  Truly.  The director is such a good guy, and is painting a very realistic, and BEAUTIFUL picture of families who deal with Autism on a daily basis.  You'll be amazed by the finished product, of that I am sure.

So...if they're filming this summer, I've got a month or so to lose weight, clean the house, and whiten my teeth! ha ha.  Actually, not ha ha, because I'm totally NOT joking! :-)

Go here to learn more about the cause, and here to read a little bit about each of the families to be filmed.