Autism Awareness Month 2012

Today marks the last day of Autism Awareness Month 2012. Did you do anything in particular this year to draw attention, spread awareness, or create action?

All month long I've been wearing my autism button on my jacket lapel. It says, "April is autism awareness month. Every day is autism awareness day in our home." It's been a great conversation starter for those who take the time to read it when I'm out and about.

I've also been wearing my autism t-shirts. In fact, I made a new one last week with a handy dandy iron-on transfer placed on a new white shirt.

Here is the image I put on the front of my shirt:

On the back of the shirt I added the Pyramid of Crazy. I wore the shirt to an autism awareness event that my nonprofit co-hosted with another special needs organization. The next morning I also wore the shirt to another autism fundraising event I attended. I got a lot of smiles and comments on the shirt, so I guess the idea was alright after all.

I've also been drawing attention to autism through various speaking engagements and meetings within my local community. There is a lot to talk about! Some of those events have yielded future meetings and speaking engagements. Much work is to be done, but if people in my own community can learn something about autism and be more aware and more tolerant, then it is all definitely worth the time and effort.

There are a few posts I'd like to share with you that I wrote last year that may add a little something to this, the last day of Autism Awareness Month 2012.

1. I did a Facebook project a couple of years ago where I listed 1 thing about autism each day of April for my status update. Read all about it at: Autism Awareness Tidbits

2. I wrote my take on "Welcome to Holland." Autism may not be like tiptoeing through the tulips. Read on at: Welcome to Holland. Or is it Beirut?

3. Last but not least, I like to share a brief post I wrote called, Every day is autism awareness day.

Thank you for joining me for Autism Awareness Month. I wonder what I'll do next year?

P.S. I want to announce our winner from the coffee giveaway I posted last week in appreciation of reaching over 1,000 likes on Facebook. The winner is Marisa! I numbered all of the comments and then had my hubby pick a random number. Hers was the winner! Marisa, I sent you an email so get in touch with me and I'll send you your coffee! I hope you enjoy it.      

  

Flashback Friday: Pyramid of Crazy

I am co-hosting an autism awareness event today through my nonprofit, and I got a brilliant (or maybe dumb...) idea to make my own t-shirt. Whenever I do speaking engagements and mention my online name, the words "Caffeinated Autism Mom" always gets a chuckle from the audience.

At the event, I thought I should wear a t-shirt related to autism. I have completely worn out 2 of my autism shirts and the pickings are getting slim. I had several ideas, but they were all quite serious and some were pretty controversial.

So, I figured it might be fun to use my online name on the t-shirt to draw attention and possibly use it as a fun ice breaker with those who stop by my table.

Want to know what I have planned for the back of the t-shirt? The Pyramid of Crazy. This particular post is in my top 3 all-time favorite posts that I have written here at Caffeinated Autism Mom. It's completely silly and I love it. I hope you enjoy it, too.

Imagine me wearing a t-shirt with the pyramid on the back. It should be awesome as long as the transfer material, my printer and my iron cooperate!

Now, don't forget to enter the giveaway I've got going on right now. You could win some awesome coffee! Click here to read all about it and to enter.

If you haven't yet read my post about the Autism Mom's Pyramid of Crazy, you need to do it! I promise you will smile. You may even laugh out loud. And, don't forget to grab the Pyramid of Crazy PicBadge!

Another giveaway! How much do I love you?

Last week we made it to a magnificent 1,000 "Likes" on Facebook! I was floored by the love from you guys, so I thought I'd send some love right back at ya!

It's time for another giveaway!

As a token of appreciation for visiting my blog's little corner on Facebook, I thought I would pick a gift for you that is near and dear to my heart.

What could it be?

Well, think about my name: Caffeinated Autism Mom.

Any guesses? It's pretty obvious, I think.

I'm giving away coffee, of course!

Up for grabs is a 12-ounce bag of Grounds for Change whole bean coffee. Their coffee is fair trade certified, organic certified, CarbonFree certified, and shade grown. Can you say awesome? It is the Nicaragua "Segovia" variety, which is a medium roast with notes of caramel apple and roasted nuts.

Sound delicous? Just writing all of that is making me want to invent a remote controlled coffee maker. Right. Now.

Now, for a confession.

I thoughtfully purchased this bag of coffee...for myself. And, I have been looking forward to opening it. I have never tried the Grounds for Change brand and I've been wanting to.

However, you may recall that recently I have been making a concerted effort to cut down on my caffeine consumption. It sucks. But, my body is happier with the change. I have learned it's okay to say, "decaf."

So, my friends, you get to reap the benefit! I figured this was a perfect way for me to say thanks for hanging out with me on Facebook.

Entering to win is easy. All you have to do is:

1. Like Caffeinated Autism Mom on Facebook.
2. Leave a comment below this post that includes:
    (a) your email address, and
    (b) your favorite coffee brand and/or favorite coffee drink.

That's it! Remember, if you don't include your email address, I can't let you know if you won! I'll accept blog comment entries all week long. The winner will be announced on Facebook next Monday, April 30th.  

By the way, my drink of choice right now is a decaf, ristretto shot latte. If I'm feeling extra indulgent, I make it a breve. Just in case you were wondering.

Before I wrap this up, I wanted to take a moment to announce the winner of the copy of Kate Winslet's book, The Golden Hat.

Drum roll, please...

The winner is: Denise Walk! Congratulations, Denise! I have already sent you an email, so I hope to hear from you soon.

Good luck to everyone with the latest giveaway! If you win, I'd love to hear how the coffee tastes. I may have to buy another bag of it to try!

Flashback Friday: Financial struggles of autism families

My hubby and I have been poring over our budget recently as we contemplate some things, and I remembered a post I wrote about how autism families earn less. Autism families really struggle with finances across the board, unless you're some sort of a famous bazillionaire.

Like so many of you out there, we are underwater in our mortgage. That is a scary feeling because on paper we have done everything right. We chose not to max out our home's equity and we are very careful with our credit and diligent with our budget.

Back when my hubby lost his job we had to slash and burn our budget just to survive. Let me tell you how hard it can be as a single income household to maintain supplements and a special diet while on unemployment! The sad thing is that when Titan found a new job about 6 months later, he had to take a monumental pay cut.

Financial stress just doesn't stop...especially in this economy. Pile on autism and it can be downright overwhelming.

My hope for you is that you live in a State that has enacted autism legislation in order to pay for therapies. My hope for you is that you are not going in the hole each month despite your best efforts. I hope to someday join you in those more pleasant realities.   

Check out the post I wrote last June and see how researchers have confirmed that our financial struggles are statistically significant.


P.S. Don't forget to enter the giveaway for Kate Winslet's new book, The Golden Hat. The contest ends soon! I'll announce the winner on Monday morning. Good luck!

Wordless Wednesday: Ties are cool

While on a trip out of town we visited a children's clothing store. I told the boys they could each pick out one item to purchase. Prince Charming picked a pair of sunglasses and Monkey found a tie he liked. The tie was a very surprising choice!

Monkey didn't have any proper button-down shirts to wear the tie with (or any special occasions to wear it to), but by golly he wanted that tie! In fact, about a week later we found a hat on clearance for just a few dollars and both the tie and hat went together pretty well. The fact that the hat looked similar to his Grandpa's hat was a humongous added bonus! Monkey was ecstatic with his new clothing items!

A couple of weeks ago on a Saturday morning, he was busily getting ready in his room for a day full of play, and guess what his clothing choice was? Yep, you guessed it!

He came up with this all on his own!
Isn't he handsome?

Monkey is ready to go outside to play
basketball and ride his bike.

Don't forget to enter the giveaway for a copy of Kate Winslet's new book, The Golden Hat: Talking Back to Autism. Click here.

Book Review & Giveaway: The Golden Hat

Last April I first shared with you about Kate Winslet’s upcoming book entitled, The Golden Hat. I was intrigued by how she became friends with an autism family following her experience of voicing the English narration of their film, A Mother’s Courage. The documentary chronicled the story of Margret and her son, Keli, a teenager with nonverbal autism.

Kate shares how she became emotionally invested in the family:

Through working on the film, I entered a new world of families with children who have autism, where the challenges they face daily are profound and overwhelming. The look on Keli’s face when he typed his first words to me touched me as a mother, and as a human being. I witnessed Margret discover her son after years of silence. As a mother of two very verbal, expressive, affectionate children, it wasn’t enough to provide this narration alone and to simply walk away.

Taking inspiration from Keli’s new ability to communicate and a poem he wrote about a magical Golden Hat. The hat that Keli described could help a boy without a voice to talk. Kate decided to send around one of her old hats and ask celebrities to take their self-portrait.  She asked that those who took a photograph while wearing the hat would think about those individuals with nonverbal autism and then express something important to them.

Margret begins her story with the following:

Imagine waking up in your bed, just as you are now, with all your mental capacity and intelligence. In your mind, you know that everything is the way it is supposed to be…except one thing. Your senses are all mixed up. You cannot see and hear at the same time. You only get a fragmented view of your environment. You have little sense of where your body is. You cannot speak. You have no voice.

Margret had been told that her son, Keli, only had the capacity of a 2-year old. This obviously tempered the way she treated him. It was incredible to read about how everything she thought she knew about her son was actually incorrect, like when she learned his favorite authors were Twain and Tolkien and not Teletubbies. I can hardly imagine how she must have felt when she realized so many new things about her son. Particularly heartbreaking was her description of some medical issues her son went through. A child without speech is exceedingly difficult to diagnose!

The more I read, the more I wanted to learn about her son’s story. In fact, I added her documentary to my Netflix queue. I can’t wait to watch it! I am interested to see how Keli progressed from nonverbal to communicating through the RPM (rapid prompting method) via HALO in Austin, Texas. I actually know a local family who utilized RPM and HALO and I can’t wait to learn more about it and about Keli’s journey into communication.  

I love how Margret ends her chapter:

Now imagine going to bed. Everything is as it is supposed to be, except one thing. Your senses are all mixed up. You sense your surroundings in a fragmented way. But you are assured. You know that you are among people who care for you. People who are willing to fight for you and do their best to lend you a voice. You close your eyes, knowing that when you wake up the next morning, you have the means to communicate your desires, wants, and feelings.

Now that’s something to be grateful for.

For me, The Golden Hat: Talking Back to Autism was well worth the read even if I hadn’t seen the pictures and quotes from the various celebrities. I was enthralled by the stories from Margret and Kate, and it was really interesting to read the various emails that went back and forth between them as the book idea and The Golden Hat Foundation came into existence. I love the genuine spirit between these women and know they have forged a friendship to be cherished.

I especially love that all of the proceeds from the book will benefit The Golden Hat Foundation, which seeks to build innovative living campuses for people with autism.

The celebrity photos and quotes are just icing on the cake. The sheer number of famous people who participated in Kate’s book project is pleasantly surprising. The book gives the feel of a more substantial coffee table book, with full color photography (albeit candid self-portraits taken with a point and shoot camera). Some celebrities really took the project’s intent to heart as they provided their quote. Others? Not so much. But, the result is an eclectic mix of perspective that is fun to read through.

Some of the most touching quotes are from individuals on the autism spectrum who are nonverbal.

At the age of 14, Keli communicated, “I am real.”

In response to the question, “What have you been doing all these years?”, 19-year old Dov said, “Listening.”

The Golden Hat: Talking Back to Autism is a book that I consider a conversation starter. If we have not been personally touched by a nonverbal child with autism, this book will serve as a great place to begin thinking and talking about it. And, it’s obviously fun to see some of your favorite celebs in personal moments (not airbrushed and perfectly coiffed).

Bravo to Kate Winslet for getting involved and trying to make a difference in the autism community, and kudos to Margret and Keli for serving as inspiration to other nonverbal autism families out there.

Disclaimer: Simon & Schuster, publisher of The Golden Hat, provided me with a copy of the book at no charge in exchange for my opinion and review.

Now, here’s where it gets exciting…

Since the copy I received will be donated to my nonprofit's lending library, Simon & Schuster agreed to send me another book to give away to one of my readers! Isn't that great?

You have an opportunity to win a copy of The Golden Hat! To enter, please follow the instructions below.   

a Rafflecopter giveaway

Flashback Friday: Another Bad Mommy Moment

Yesterday morning I had a moment of déjà vu. I found myself in the same situation with Prince Charming that I was in over a year ago with Monkey. It starts with a tired mom forgetting to finish the laundry and ends up with at least one boy without dry clothes to wear to school.  

In this situation, Prince Charming had a much more difficult time accepting the change in circumstances than Monkey did last year.

Luckily I found a pair of pants for him to wear that were hiding out in Monkey’s dresser drawer and happened to be the right size. Can you say minor miracle? He objected to the idea of a new pair of pants he’d never worn before. After significant prodding, he put them on and they fit perfectly. He was a very happy little boy when he got on the school bus. Thank God.

To read about the original Bad Mommy incident, click here.

Wordless Wednesday: Toothy Milestone

Prince Charming recently reached an important milestone! At the ripe old age of almost 7, he lost his first tooth!

I've been home for every single loose tooth that Monkey has had so far, and I'm sad to say that I missed Prince Charming's big occasion entirely. I was out of the house working on taxes for my nonprofit, of all things. Total bummer.

After all was said and done, I got a Skype video call on my cell phone and saw his happy, tear-stained face. He was so proud of himself. My little boy is growing up.

The following pictures were taken by my hubby to document the big event. :-)   



Prince Charming was eating lunch, bit into an apple slice, and the rest is history. He was fairly traumatized, especially because it meant he couldn't finish his lunch until the tooth was pulled. He couldn't handle the sensation of the loose tooth in his mouth and everything came to a screeching halt until it was dealt with.  



Daddy to the rescue! After much reassuring and coaxing, Prince Charming allowed Titan to pull that pesky loose tooth. He was so proud to tell me about his bravery and to show me the "hole" in his mouth. 

Happy Easter 2012

Image from Mars Hill Church. www.marshill.com

This morning we took our boys to Easter service at church. We haven't attended church on Easter Sunday for a few years because of the stress involved with the crowds, noise, etc. We made the effort this morning, and I am happy (and surprised!) to say that the boys did much better than we expected.

As we drove to church, we talked about what they could expect when we arrived and what could possibly happen. We also talked about the importance of being flexible if things didn't occur exactly the way we thought. The boys listened.

We brought a small toolkit of things to help them get through the service, including earmuffs for Prince Charming. Monkey didn't need any tools, and he actually listened to the Pastor and enjoyed the music.

It was probably the best I've ever seen them in church. Titan and I are so proud of them!

If church is difficult for you to attend like it has been for us, click here to read about how we celebrated Easter last year. 

Happy Easter!

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

World Autism Awareness Day 2012

Today is World Autism Awareness Day. Originally I was going to post a response to the comments from my post last Friday, “Autism epidemic, anyone?” That follow up post has taken on a life of its own. It’s gotten much bigger than I expected, and I’m still not done writing it. So, I thought I would take a portion of it and break it down a bit, and then I’ll post the rest of it in the next day or two.

Since today is a significant day in the autism community, I thought I should go along the awareness vein and share som very pertinent and timely information that I learned from a friend of mine, Marcella Piper-Terry. She is an independent researcher and has a firm grasp on statistics. She started crunching some numbers related to the autism prevalence and tried to bring those numbers into the present day (since the numbers the CDC released are OLD and out-of-date). See my last blog post for the full explanation of why the CDC’s numbers are old and not very relevant for us today.

What Marcella came up with was shocking. I have no way to verify her numbers, but I appreciate her taking the time to try to make some sense out of things for the rest of us. Regardless, her numbers have much more value to me than what the CDC presented last week.

There was a lot of shock surrounding the increase of autism to 1 in 88. Well, that may be so, but how shocked will you be when you know what the current number is? Keep in mind, Marcella could only go forward with the trends already established. The CDC does not use a population-based model. It is a scattered, incomplete pool of data. If we had more complete numbers that were more representative of the population, I know in my heart that even the numbers Marcella came up with are VERY conservative. The sheer enormity of that, my friends, is what we should be shocked by.

The following are her numbers and her words as she describes them: 

The CDC says the rate of autism is 1 in 88. That number is four years old and is calculated for children who were 8 years old in 2008. The number reflects a 78% increase over the 1 in 150 number that was from 2002 (announced in 2007). Dividing 78% (rate of increase) by 6 (number of years from 2002 to 2008) we get a yearly increase of 13%. This allows us to calculate (approximately) the true rate of autism for 8 year olds in 2012. Using the same 13% per year increase we can extrapolate out five years and figure the approximate true rate of autism for children who are now between 3 and 8 years of age. This photo album contains my chicken scratch notes as I performed these calculations.

Long numbers. I didn't round off anything because I wanted to be completely exact in my calculations. This started out to be just a little exploration, but soon became one of those "Oh, My God... I have to finish this" things. That's why it gets more organized toward the end.

I started with the 1 in 88 number, calculated for 8 year-olds in 2008. This equals 1.14%. The 78% increase over the 1 in 150 number (from 2002) is divided by six (number of years from 2002 to 2008) for an average yearly increase of 13%.

Calculating the yearly increase yields the following:
1 in 78 (2009)
1 in 69 (2010)
1 in 61 (2011)

These numbers are for 8 year-olds diagnosed with autism.
The current number for 8 year-old diagnosed with autism is estimated to be 1 in 54.

Current rates (2012) for children who are less than 8 years old:
1 in 48 for 7 year olds;
1 in 42 for 6 year olds;
1 in 37 for 5 year olds;
1 in 33 for 4 year olds;
1 in 29 for 3 year olds.in 29 for 3 year olds.

Are you scared yet?
Here is something else to think about...
The rate of increase used to calculate these statistics is based on CDC data gathered in 2008. That was before the 2009 H1N1 scare. These numbers are based on the real-world scenario BEFORE the push for the flu vaccine for pregnant women and infants beginning at six months of age. That means that even as ghastly as these numbers are, they are underestimates of the true magnitude of this crisis.

Extrapolating out for the next ten years:
2013 = 1 in 26;
2014 = 1 in 23;
2015 = 1 in 20;
2016 = 1 in 18;
2017 = 1 in 16;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.6;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.

I encourage you to look up my friend Marcella Piper-Terry on Facebook and visit her website. She is a force, and she is much more knowledgeable on topics related to autism than I am.

As part of launching Autism Awareness Month and recognizing that today is World Autism Awareness Day, I will share with you one of my favorite slogans about autism. In fact, I purchased a button with this saying and I wear it during the month of April.

April is Autism Awareness Month. Every day is Autism Awareness Day in our home.    

I support Autism Awareness, but I would like to think that we are becoming more aware of autism. The big question mark of “what do we do now that we’re aware of autism” makes me further endorse April as Autism Action Month. We need to act on behalf of our children. 

My friend Cari from Bubble Gum on My Shoe took it a step further and made a t-shirt that says:

My kid has autism. Yours is next.

She’s right. We cannot sit back and do nothing.

I encourage you to speak with your legislators about autism. Share your story. Find autism organizations that are making meaningful contributions to your community and support them. Connect with other autism parents online and locally through support groups. We are each other’s best resource. Let’s act together and try to create positive change for our kids.