1 in 68. 2 of 2.

If you are an autism parent, I'm sure you saw the massive social media frenzy with yesterday's announcement from the CDC. Their new rates of autism are 1 in 68.

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Well, sort of.

The numbers were accurate 4 years ago.

If you were 8 years old.

And, if you lived in 1 of 11 test site areas.

The rest of us out there were not included in those numbers. Like my boys (who were too young). And like my entire State (which was not one of the test sites).

The whole thing makes me want to puke. Seriously.

I was in a craptastic mood because of the latest and greatest "news" from the CDC and was being fairly vocal about it online when one of my Facebook friends asked me why I was upset.

For SO MANY reasons!

As I told her, it's isn't just about the CDC "math". They obviously need a larger sample size for the analysis to be of any actual value. This 1 in 68 business is just fluff. We need the REAL, CURRENT numbers!

As you know, I have 2 boys diagnosed on the spectrum. Through my nonprofit work I know hundreds upon hundreds of affected children and families that are LOCAL in my area.

In fact, a mom I know said that a classroom in her school has an incidence rate of 1 in every 5 kids in one grade. 1 in 5! And, the next grade is about 1 in every 10 kids. 1 in 10! This is only 2 grades in 1 elementary school, and there are that many kids with autism.

Does this not shock anyone?

Or, shall I say, does this not shock anyone that doesn't already have a kid with autism?

It's safe for me to say that in our local area, the average across schools is approximately 1 kid with autism in every classroom, and likely there are even more than that. This is just my own observation based upon what I know about the area, but I can tell you that my half-assed estimate is far more realistic than the CDC's numbers.

Once again, things are swept under the rug and autism families continue to struggle. Middle class autism families are often in huge crisis all the time. They can't afford therapies because they are too poor (and our State still refuses to mandate autism coverage) and they don't qualify for help from the government because they're too rich. That's a freaking joke. Too rich. Most of these families are single-income because autism can be so all-consuming.

These kids slip through the cracks, they don't get the interventions and education they need, the parents are stressed to the max, some of those marriages fall apart, and the cycle of crisis continues on.

More kids get diagnosed every single day. I meet new families almost all the time. It keeps getting worse.

When will enough be enough?

When will the rate of autism be so shocking to the entire nation that sweeping change and action will be demanded? Does it have to get to 1 in every 5 kids? It may already be in some areas. Or, does it have to be a 100% incidence rate, like it already is with my boys?

Making the world better

After a stressful week, I was bracing myself for what I thought would inevitably be a bad day. I've been spending some late nights stressing over the details of my nonprofit, knowing that I can only do so much as one person, while always wishing that I could do more. I am forever dreaming of how my life would be easier if I could only clone myself, just to help alleviate some of the heavy burdens I bear with my family, as well as the volunteer work that I am so passionate about. I'm not proud to say that at one particularly low, yet fleeting, moment while in my car contemplating the zillions of things tumbling around in my brain, I succumbed to the overwhelming need to cry. It stopped almost as fast as it began, but I guess my body had reached its maximum at that moment and needed to release whatever was pent up inside. Needless to say, I didn't hold any high hopes for the day after that.

Then, it seemed that the proverbial clouds parted. What started out seemingly dreary, turned out to be about as good as any day could have been.

One of the highlights of my day was a meeting I had with one of our nonprofit's partners, which is another local nonprofit. I won't bore you with the details (which I personally find fascinating), but the time we spent was very fruitful, and many ideas were shared, plans were made, and we parted with a renewed commitment to what we are endeavoring to do together.

However, the best part of the entire conversation was how our respective mission statements align in the idea that we are looking to change the way the community, John Q. Public, views special needs. Rather than special needs (like autism and others) marking a difference that separates and ostracizes, wouldn't it be great if special needs were normalized in such a way that the entire community helped to advocate, and in doing so, created an environment of inclusion? We had some discussion about the nuts of bolts of this kind of vision for the future, and it all comes down to thinking about what your dream is.

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What is the big picture? What do you want to accomplish? How are you going to work to make the world better for the thing you are most passionate about?

I left the meeting feeling invigorated, with a renewed sense of purpose. It added fuel to my fire, and my head was spinning with possibilities and inspiration.

Then, many other things fell into place today in just the right way with my schedule and "to do" list, and I ended up being phenomenally productive. It was odd...but I wasn't going to question it. I just wanted to ride the wave of a good day.

When the boys got home, I found out that they both had a decent day at school, that they had finished their schoolwork early (by some apparent miracle) and neither had any homework to do. The best part? They were in good enough moods that they didn't automatically catapult into their usual bickering and fighting mode after they got home. That in and of itself was a moment of relief.

We had an appointment to go to, and due to the timing of it, by the time we had to head back home it put us right in the thick of rush hour when all the commuters are heading home from their jobs in Seattle. If there's one thing you can count on in Seattle, the traffic sucks pretty much all the time. The particular area I had to travel through is known for its slowdowns, so I had no expectations of getting home at a decent time. I have learned to take the back roads, but even they can get backed up. To make matters worse, my tummy was protesting the fact that I hadn't had time to consume any food of substance all day, besides the quick coffee I grabbed after my meeting.

Remembering that I had forgotten to take something out for dinner and that we desperately needed to go to the grocery store, I was overcome with a craving for pizza. I didn't want to scrounge around for something to make for dinner when we got home! I called Titan and tried to tell him in code (so listening little ears wouldn't freak out with excitement...or dismay if plans fell through) that I wanted to meet him for pizza on our way home. Using euphemistic terms, we hatched a sly plan for remedying my hungry stomach. There is one place that is our favorite for gluten-free pizza, and that's where we headed. Luckily, there was no fighting between the boys in the car like usual, so I wasn't a complete stress case when we arrived. Traffic was actually decent, too! I was looking forward to an enjoyable meal with some of my favorite food.

After we sat down and placed our order, Prince Charming started talking. Mind you, he hadn't really conversed since we got to the restaurant.

All of a sudden he said, "Mommy?"
"Yes, sweetheart," I replied.
"I'm going to make the world a better place."

His eyes were really bright and sincere and he gave me the biggest grin, displaying his dimple. I melted on the spot.

It's almost as if he had been reading my thoughts and had been sitting in on my meeting. I don't think it was a coincidence. I think God gives us little moments like these to help us know we are on the right path. It's exactly what I needed.

I have no doubt that my little guy will make a difference in the world, and that the world will be a better place because he is in it. And, I too will try my best to make the world a better place. I'm already working on it. I can only hope that my boys will see the fruits of my labor someday.

What is your passion? What inspires you to make the world a better place?

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You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.


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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.

One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.

At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.

I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.

Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.

Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.

Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.

This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.

I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.

It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.

I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

Legal priorities in WA: Is this an April Fool's Day prank?

I'm having a nausea-inducing sense of deja vu right now, and I wonder if I'm somehow getting punked on April Fool's Day (a.k.a. the first day of Autism Awareness Month). Beware, because a rant is a' comin'...

Scheduled today in my state's capitol of Olympia, Washington, is a Senate Health Care Committee hearing to discuss an abortion mandate, known as the "Reproductive Parity Act."

This is the same exact type of Senate hearing that I testified at when I was working to enact "Autism Insurance Parity" in the State of Washington. Shayan's Law, as it was commonly known, never saw the light of day because it got shut down by the Health Care Committee every time it was presented.

We had a HUGE grassroots effort, and it was standing room only at our particular Senate hearing. Autism families and our various supporters joined together for rallies at the capitol. Hundreds of us were knocking on the doors of our legislators' offices, scheduling meetings with them, sending emails, and making phone calls to voice our opinion about the importance of autism insurance parity for Washington.

For what?

Nothing.

Autism doesn't matter enough to the law makers in Washington State to do anything about providing mandates for coverage like so many other states in our country have already done.

It appears now that abortions could be more important than autism.

Pardon me while I vomit.

The fight for autism continues. Small strides are being taken through the work of some dedicated attorneys and an organization that is working to sue every insurance company that operates in Washington State, until autism coverage is mandated for everyone. God bless them for continuing the carry the torch of autism for all of us!

And, they are winning!

People are starting to get coverage for necessary autism therapies in drips and drabs. Unfortunately, my family's insurance company has not entered the court room yet, but their day is coming. I only wish it would come faster!



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Until then, my kids will continue to be denied coverage, and we will continue to not get the therapies they need so much, all due to the fact that we are not wealthy enough to pay for it all out of our own pocket.

It is SO WRONG.

It saddens me to think that abortion mandates are more important than autism mandates. Our kids with autism need help. Families are suffering under the financial burden of autism. Children are not getting services that could help them in both the short and long-term. The people who could enact meaningful change that would better the lives of so many of our state's citizens choose not to.

This is not what I consider to be a good start to Autism Awareness Month.


(Please note: This is my opinion about the importance of one issue over another, and I am entitled to feel the way I feel. Negative comments that seek to engage me or any of my readers in a bitter political debate are not welcome.) 

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.

In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.

A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  

As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     

I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.

I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   

Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.

This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.

To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    

One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.

For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.

A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.

We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?

If you haven’t yet thought about it, maybe now is the time.             

 

The R-Word Needs to Go B-Bye!

 

Children with special needs should never be made to feel “less.” They may be different, but they are not less. (Thank you, Temple Grandin!)

I am fortunate that I have never heard the R-word uttered in my presence as it relates to any child. Yet, I know it is happening. All over the place.

Children and adults that have challenges, along with their families, are being made to feel like they don’t deserve to share the planet with the rest of the population. Judgmental people and hurtful words run rampant.

When I hear stories of people I know, bloggers and friends, having to experience this sort of discrimination, it saddens me. It’s not easy to live and thrive with a special need or an intellectual disability. Families go through a lot and they do not deserve to be ridiculed. You would think that we as a society would be more tolerant by now.

There is still a lot of work to do! It can start with you.

Spread the Word to End the Word.

Visit http://r-word.org and learn more about how you can make a pledge and participate in activities near you.   

When autism awareness is a bad thing

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It seems weird to think that autism awareness could be bad. But, I believe in certain situations it can be.

There have been some newsworthy events happening in my community surrounding an autism charity. This organization had a platform of “autism awareness” and had a lot of success at spreading awareness by selling autism-themed trinkets in front of grocery stores.

Being that I’m involved in the nonprofit community, I have known of this organization for a while and our paths have crossed on more than one occasion.

The first time I saw them, I was walking into a Wal-Mart store and I saw their tables out front with all of their autism stuff. With a warm feeling in my heart, I picked up a brochure. After all, they were representing families like mine!

The second time I saw them, there were a few people gathered around the table making donations, and so I stopped to try to learn more. I waited for the crowd to disperse a bit and then started chatting with their representative. When I asked a couple of questions, basic things like what they fund and what their mission was, I kept getting referred back to their brochure and to call their office with my questions.

That put me aback. I thought it was strange that their own people couldn’t speak to the work that they were doing. I politely picked up another brochure and went about my business, making sure to look them up when I got home.

And, I did. Their website was certainly snappy enough. Someone had put some time into the design and it wasn’t merely thrown together. There was content, but I didn’t see a lot of information, and that bothered me. I let it go and forgot about it until another day.

Time passed, and I was working on a nonprofit autism event with some other local nonprofits. The aforementioned autism organization asked to be a vendor at our event. We agreed. At the event, we noticed that they were collecting money and their cash box was stuffed full with donations from the attendees. That rubbed a few of us organizers the wrong way. Here we were, a bunch of nonprofits representing ourselves as autism resources, and they were the only ones seeking money with no real information provided. It just didn’t feel right.  

After some later discussion and research, things started coming into focus. This organization was not who they were cracked up to be. It was merely a front for making money for the founders. Autism was the popular cause they chose.

It has come to light that they didn’t do much of anything to support autism in our area. They were keeping the vast majority of the money they raised for themselves. And, they were under investigation both in Washington and Oregon.

When I learned all of this, I was hurt. I felt duped. I also felt somehow responsible for people giving their money to this organization who attended the event I worked on. That made me angry.

The news was shared and people started paying closer attention. I began hearing stories of my friends notifying management at the stores they shopped at when they saw the organization camped out in front. In fact, on several occasions, they were removed from soliciting at those stores. Little by little, the word was getting out.

It’s all a matter of public record at this point. They have since ceased operations here in Washington, and I’m happy for that.

However, I get a twinge of anger every single time I see one of their bumper stickers on a car. And, that happens almost every day. They were very good at “autism awareness.” That particular brand of awareness feels like a kick in the stomach every time I see their logo on someone’s car in the community. In fact, even today, I had to resist the overwhelming urge to follow a car into a parking lot and try to tell them the truth about their bumper sticker. It almost feels like an obligation since I am an autism parent and also the head of nonprofit who is actually trying to do good for local autism families.  

Lord knows, I haven’t profited from my nonprofit work. It’s all about getting the information out there to where it needs to go, and connecting people with resources they need. Maybe someday I’ll make a livable wage, but I guarantee it will be earned fairly.

In this situation, I feel like autism awareness has created a dark cloud over the community.

Stores are no longer trusting of organizations (understandably), and it’s causing negative effects for others who are legitimate and want to get their story out there. Another organization I know and love comes to mind that has been barred from selling raffle tickets in front of stores, with all proceeds benefiting a major annual autism event. It is a sad thing for them, and it’s sad for all of us autism families that enjoy that event.

A disservice has been done to autism awareness causes in my state, and it’s because of one, very effective, yet short-lived organization. Other organizations are now directly suffering from their actions.

Worse yet, unknowing people are driving around with evidence of fraud plastered to their car’s bumper and they have no idea.

I guess the one thing I learned from this experience is to ALWAYS research people and organizations you give to. Personally, I have researched many organizations, and after learning the truth about how they spend their money, have made the choice to never give to them again.

I’ve found, generally speaking, that larger organizations may not manage their money very well. I am no longer blind to big events and fundraising campaigns that can’t even break even. It’s sickening to think about all of those people walking for all sorts of causes with their matching t-shirts and the sense of doing something bigger than yourself, and then learning that in some cases, none of that money will go toward what you were walking for. In fact, they may have even lost money on the event! Or, in the case of something like a fancy dinner auction, most of the money raised may have been spent on the caterer and auctioneer with only a fraction of a percent going toward anything helpful. Or, maybe it all ends up paying the 6-figure salaries of the organization’s executives. Stuff like that is rampant.

Any way you slice it, I learned that most of the money I was giving away was not going where I wanted it to. And, now that I know that, it’s no longer acceptable to me.

My new way of thinking is that any money I give (beyond what I already donate to my own organization) goes to smaller, grassroots organizations that keep money in their local community. I can see the actual impact of the programs that I support because the money stays here and I get to know the people behind the cause. Now, that is something I can believe in.

I am no longer swayed by slick ads, radio spots, and huge organizations that have a ton of support and name recognition. I seek out places that can deliver tangible change, from person to person. And, for my money, I believe that’s the best way to create awareness of any kind, with a lasting and positive impact.

I encourage you to look around your own community and identify organizations that are doing good work, and if you can, support them with your time and resources. You will feel a deep sense of satisfaction that your actions are truly helping others. Nonprofits, particularly smaller ones, are always looking for people to join ranks and provide a helping hand.

Awareness should always be a good thing. Isn’t that the point? I am now working to ensure that autism awareness in my local area is restored to its good name and works.

Help me be part of the solution by not giving away your resources blindly. Do your best to learn about the work, mission and outcomes of organizations near you. The effect will be great! And, in the case of autism awareness, it can once again be a good thing.                  

Book Review & Giveaway: Easy to Love but Hard to Raise

Have you finished your Christmas shopping yet? Well, today I’m trying to help you out a little bit with that. I have a book that is perfect to give to your extended family members who maybe need a little insight about special needs. Or, you can keep it as a nice gift for yourself as a reminder that you are not alone.

I was contacted by DRT Press about the new book, Easy to Love but Hard to Raise: Real Parents; Challenging Kids, True Stories, edited by Kay Marner and Adrienne Ehlert Bashista. They didn’t give me a big, fat check to say nice things about them, but they did send me a shiny, new copy of this book in paperback. I was cool with that because I love books, and may even have a slight problem with them - you should see all the books in my office…

You, my friends, now have a chance to win a copy of Easy to Love but Hard to Raise for your very own! It’s like a little bit of Christmas from me to you (courtesy of DRT Press). J

The editors set the tone for the book when they gave their acknowledgements:

…to all the parents of children who are oh-so-easy to love, but so hard to raise. May you find hope, community and kindred spirits in these pages.

You know you are in for something real when you see a statement like that.

There are stories written by 32 parents that describe situations they’ve had with their children. Between these anecdotes are brief Q & A sections with 25 experts that discuss related issues. This is a unique approach and it provides a nice contrast in content.

Rather than focusing on my favorite moments from the diverse stories shared within its pages, I find myself more drawn to the intent of the book.

I really appreciated the Foreward written by Dr. Edward Hallowell. Here is an excerpt taken from page xi:

Some kids are easy to love. Some kids just sail through childhood getting love wherever and whenever they need it. But then there are the kids who live in alphabet soup. They are not so easy to love. They can be difficult, distant, disobedient, defiant, dangerous, even delusional. They can leave a parent crying herself to sleep every night, they can leave a parent feeling guilty for having negative feelings, they can leave a parent despairing that the child will ever find a way in the world, they can deplete the store of love every parent starts off with.

But they can’t deplete it for long. That’s what’s so amazing about these parents. They keep on going. They never give up. They give their all, and then they find more all to give. They are paragons of the best of the human spirit. And they earn this praise in the hot and dusty arena of the struggle to raise a child who can seem, at times, impossible to raise.    

Yes!

Yes. He gets it.

With the Introduction from Kay Marner, we realize the true meaning of this book. It is this intent with which I write my blog. These words could have just as easily come from me and they speak the truth of what many of us parents in the trenches seek to do by reaching out to others.

No, I’m not a parenting expert, but I am an expert on my child and the complex and contradictory emotions that come with raising her. In time I’ve learned that there’s value in sharing these emotions. Expert advice is not the only thing struggling parents need. We also need to know we’re not alone; to know that other parents are going through similar experiences, making similar mistakes, and searching for similar answers. We need something experts can’t give us: we need each other.

Absolutely.

There’s really nothing more to say, is there?

If you want to learn about how other parents are dealing with ADHD, SPD, OCD, PDD and other diagnoses, than you should definitely take some time to read this book. The parent perspective is a refreshing change from the dry, scientific “experts” that we all read in our spare time between the various daily crises, adventures and attempts to sleep.

One thing is certain, if you hadn’t already figured it out: you are not alone.

Thank you to DRT Press for giving me a chance to read this book, and also for allowing me to give away a copy to my dear readers. To learn more about this book, visit www.easytolovebut.com or www.drtpress.com.   

*UPDATE as of 11/30/12 12pm Pacific*
There have been some technical difficulties with the giveaway widget since I posted this 12 hours ago. I started out with Rafflecopter and had a couple of entries, but ultimately I had to trash that one. I have to apologize to those that entered via Rafflecopter - I have no idea who you are...sorry. You will need to re-enter with the new widget. I replaced the old widget with a new one from PunchTab that seems to be doing better, unless you are on Internet Explorer. So far, it does not appear to work in IE at all and will not get past the "loading" screen. You will need to use Chrome or some other browser to enter the giveaway. SORRY for all of the issues this time around.

I’ll announce the winner of the giveaway next week! Good luck, everyone!

Jon Stewart made me cry

Well, kind of. You see, Jon Stewart helps put together a benefit for autism called "Night of Too Many Stars," and there was a moment from this year's show that has gone viral. In fact, you may have already seen it 15 times on Facebook.

Katy Perry sang "Firework" with one of her biggest fans, a girl with autism named Jodi DiPiazza. And that is what made me cry.

The story from the parents at the beginning of this video could be any one of us talking about our child. That parent is you. That parent is me. That little girl is my child, and she's your child.

Her dad talked about getting his daughter into a specialized school, and that things changed for her as a result. This is the very problem that so many of us have with our children on the spectrum. Access to proper care. Getting insurance to cover needed therapies and treatments. It's an uphill battle for almost all of us. But, Jodi is proof that when a child with autism is able to access what is needed, a life can change for the better. Not only for her, but for her family.

Jodi's mom said, "It's been difficult. Hard. But, it's amazing how far she's come." I know exactly how she feels. My boys are proof that progress can happen with autism.     

If you haven't yet seen the video, settle in for about 8 minutes. You may want to grab a tissue, too.

Preach it, Holly!

After being away from the computer most of yesterday, I found a quiet moment to check back in on all things social media. In my news feeds I immediately saw a lot of chatter from my autism friends about Holly Robinson Peete and 50 Cent. As they are both quite famous for very different reasons, I was intrigued and read on.

On Twitter, 50 Cent had apparently insulted someone that tweeted him by telling this person that he looked autistic. This ignorant quip had the ill-intended effect of the "R" word. Then, 50 Cent followed it up with another comment mentioning special ed. Of course, I was disgusted.

But, I gotta tell ya something. Autism parents are a fiesty bunch! As I was reading about this fiasco, I was thinking about how I could write a very spirited blog post without making him want to get a restraining order against me.

However, I saw that Holly Robinson Peete was leading the charge. I read her letter to 50 Cent and I have to say that she did a first rate, bang up job. I could not have written it any better myself! She was appropriate, informed and powerful. It's all the more reason to like her!

Holly, thank you from the bottom of my heart for representing the autism community so well. It is efforts like these that can help make change in the hearts of people everywhere.

To read the letter Holly Robinson Peete wrote to 50 Cent, click here.

To read a post from Lisa Ackerman of TACA about this, click here.

To read a post about the incident over at Strollerderby, click here.

Oh, and if by some miracle 50 Cent is reading this post, I have something I'd like to share with you...

50, this is what autism looks like in my boys. And, if I do say so myself, it looks damn handsome.

Photography by Dana Napoleon

Rant complete.

Happy Independence Day!

   

I think, therefore my head hurts.

There are a few posts I wanted to write in the past couple of weeks, but things have just not materialized. My mind is swimming right now with everything going on in my life.

I feel like I've been notably absent from the blog recently and I probably needed to at least check in and let you guys know I'm still here. I'm alive and kicking, but I'm always on the go! I barely have time to eat, much less write a witty, awesome post for you to read! Because, as you know, ALL of my posts are witty and awesome! (Did I just hear a retching sound somewhere?)

I have been so busy working on the nonprofit - having meetings, advocating, speaking, writing, event planning, thinking, reading, strategizing, organizing, creating and dreaming - that I've barely been home the past two weeks. Make that this month. Well, if I'm honest with myself, I've been at a dead run since the end of February. 

Last week I realized that in only a few more weeks, school is out for the summer. Talk about having a heart attack right then and there! How and when did this happen? I didn't give my permission for time to move this quickly! There is so much work to be done before the end of the year!

I just have to say that even though my schedule has been out of control and insane, I'm happy. I am 1,000% passionate about the work I'm doing, even though I'm not yet funded. I could not ask for a better or more supportive husband, and I have the world's greatest friend in Miss C. Without their support, the nonprofit work would be impossible.

And you know what? People are showing up. To participate. To volunteer. There are some really great people choosing to get involved with what I'm trying to do and help me create something worthwhile and valuable to the special needs community. That right there is astounding and humbling.

When the kids are out on summer break in only a few short weeks, my schedule will clear for the first time in months. Even though I dread summer break and what that transition will mean for my boys, I think there will also be a small sense of relief as well. The thought of slowing down long enough to catch my breath is kind of thrilling! Work will not cease, but the intensity will lessen. And, this is going to sound crazy, but I'm looking forward to doing some plain old filing! I also hope to finish organizing my nonprofit's office and finally getting the last of the stuff out of boxes and into their proper places. I think that will be a good summer project.

Something deep inside me tells me that I'm doing what I need to be doing, and it's happening at the right time. I am convinced that this is going to all work out somehow. Even though there are hurdles and obstacles, things will all fall into place. Personally I have a lot of fears and worries, but God is giving me a sense of peace. Doors have been opening and I am just walking through them. In fact, I can't wait for the next doors to open so that I can walk through them, too. Bring on the doors!

That's where I'm at right now. It's a good place. A bit nuts, but good.

For the final push into summer over these next few weeks, it will be hit or miss around here. I will try to post once per week (and I'll be pretty darn proud of myself if I do more than that!). I hope to see you back here early next week when I will feature a new giveaway. Be watching for that!



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!

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

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.