Blog Archives - Autism Spectrum Explained

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Spreading Autism Understanding

5/31/2014

So all the autism gear that I'd ordered from Cafe Press (which has an ENTIRE Autism Acceptance gear page) came yesterday and I'm so excited! I got a shirt that says, "Yes! You can ask me about autism" and both a shirt and a bumper sticker that say "Autism. It's not a processing error. It's a different operating system." AND I got two more bumper stickers, one of which says "Celebrate Neurodiversity" and another of which says "Autism: Different, Not Less."

Why did I post this here? Well, for one thing, I'm super excited about all this (I immediately changed into the ask me about autism shirt and were it not for the rain, I would have put the bumper stickers on my car already). But for another, I think all of these are great examples of positive ways to spread autism understanding, and a far more productive alternative to the more common puzzle piece ribbon or "support autism awareness" t-shirts.

What sets the gear I purchased apart is that it explicitly seeks to help people understand and accept autistic people. When someone who knows little about autism looks at a shirt that says, "Support Autism Awareness," what does it teach them? Well, they learn two things. 1) The wearer knows someone autistic. And 2) Autism is something bad (because why else would you wear that t-shirt?). That's it. That's all it teaches. It may spark a conversation, in which the wearer could educate the other person about autism, which is a great way to spread understanding, but if that's your goal, better to wear a shirt that says, "Yes! You can ask me about autism!" You're more likely to spread understanding that way, since you're explicitly inviting people to talk, and you're also not sending the negative messages (because, really, you never see "awareness" shirts for anything good, it's always something bad).

All of these seek to get people questioning what they think they know about autism, get conversations going, and send anyone off who has seen them knowing a bit more about autistic people than they first did. And that's why I bought the gear in the first place.

If you're interested, by the way, here's a link to the page where I found them:http://www.cafepress.com/+autism+gifts. I am not at all affiliated with the page, just passing on the link. Diary of a Mom also has some great shirts herself. You can read her blog post about them and check them out here (http://adiaryofamom.wordpress.com/2014/03/27/wear-the-change/). The title of her post was, "Wear the Change" which I think was very appropriate.

-Creigh

On Squirt Guns and the Kindness of Children

5/29/2014

Today I was at the park with a child I care for, and on our way to the bathroom he spotted two children with squirt guns and said he wanted one. Seeing their (somewhat bewildered) looks, I told him they didn't want to give one of their guns to him, and we kept on walking.

When we emerged, there were the two children again waiting for us. The oldest, who couldn't have been more than 10, spoke first. They had a third squirt gun, he said, and not only could the child I care for play with it, but he could keep it. And then the three of them proceeded to run around spraying each other with wild abandon. It was a great afternoon.

I took two morals from this run in. One, though it may be said that children can be cruel, we should never forget that they can also be very, very kind. Sometimes we all need to be reminded that there really are nice people, children and adults alike, in the world.

And two, I need to buy some squirt guns. Great sensory fun, exercise, and social interaction facilitation all in one little package! And if I ever see those children again, you can bet that we'll be returning the favor.

-Creigh

Looping Songs

5/27/2014

So, on the lighter side of things, I'm not entirely sure what the explanation is for it, but repetitively listening to the same song over and over seems to be a common trait in Autistic people. (In fact, many on the spectrum apply this to movie watching as well, and will rewind to and replay their favorite scenes over and over.)

Caley is not an exception to this trend. She says she doesn't get tired of the songs, as opposed to neurotypical people (like our poor mother, who can't stand it!). As a result, she'll loop songs over and over intensely for about a week. Caley and I share a room, which means whatever she listens to I listen to.

Today Caley re-discovered Bollywood music. Judging from the last several hours' experience, I wouldn't be surprised if I come out of this week understanding Hindi, lol.* -Creigh

*I actually really wish that was the case, I would totally love to learn Hindi. Unfortunately for me, language learning is not that easy...

Presuming Competence: What Autism Professionals Need to Know

5/26/2014

Just because we’re Autistic and we’re not supposed to be able to read things, that doesn’t mean we can’t tell that you’re presuming our incompetence. I had to go to a lot of so-called “professionals” when I was younger. They would spend our lessons teaching us using “happy faces” and “sad faces” and asking us which was appropriate for the time. It was incredibly boring, and I knew which was which very easily, but they never moved on. I was in elementary school the first time I ran into that exercise, and they were still using the same thing on me when I was in high school.

I also was constantly assumed to be a parent of an autistic person, as opposed to an autistic adult, when I interacted with autism organizations. I remember I got in contact with an autism organization, which I'm choosing not to identify. I had been forced to get into contact with them when I talked to professionals asking them for help dealing with an issue and they assumed the fact I was autistic was at the root of my problems, even though I kept telling them again and again that wasn’t what I was having a problem with. When the representative called me back, they were asking me about “my child” the entire time. “Are you the parent of Caley?” they asked me. I just hung up, because I didn’t know how in the world I could respond to that. Apparently it was assumed that an autistic person would not be competent enough to make the phone call.

A year later, I had another run in with the same organization, having endeavored to give them another chance. When I asked for help, they assumed I was asking about volunteering opportunities, not asking for help for myself. It was assumed that a university student could not be autistic. When I saw the puzzle piece logo, which was on all of their material, I told them that I found the puzzle piece logo to be offensive. I said, “I’m a person, not a puzzle.” The representative told me, “I know, but our director insists upon it.” Once again, I had to cut off contact, and didn’t get the help I needed.

When I was getting help from a governmental organization for disabled people, they told me I had to take an IQ test because they were going to be giving me help going to college and wanted to see my job aptitude. Prior to this point, repeatedly the jobs they were suggesting for me were very basic skilled, the sorts you learn at vocational schools as opposed to college. When I asked how high the scale could go on the test they were giving me, they realized they didn’t have an IQ test that went into above average. I had to come back another day for a test that could measure me properly. Apparently disabled people aren’t expected to be intelligent.

At the autism support group I accompanied my family to, parents basically got together, talked about how horrible it was to have autistic children in my hearing and all the hearing of all the other autistic children and adults there. It led me to feel like I was a burden; I was told I was a lot of extra work and I wasn’t worth the work because I wasn’t a normal child. Not explicitly, but it’s basically what they were saying a lot. I left there hurt, having heard that I needed a cure, which made me feel like there was something wrong with me being who I am. The autism support group apparently wasn’t intended to support autistic people.

At the social skills group, we were all shoved into the same room regardless of age or skill level. We were made to repeat stupid scripts again and again. It was annoying. Because I’m not stupid, but they were treating me like I was stupid.

All of these experiences were very othering, too. Out of these experiences, the support group stands out as the worst offender, one which I was exposed to again and again and again. "Normal" kids' parents don't have support groups. The social skills group was the same; "normal" kids aren't expected to rehearse the same conversation over and over again. Normal kids aren't treated as though they're stupid. But these experiences are far too common for autistic children.

That’s it. Remember that we’re here and please presume competence, because if you don’t, I’ll presume you’re not a competent professional.

-Caley

Note: This post was dictated to me, Creigh, and I typed it all, since as previously mentioned Caley has trouble getting her thoughts out when writing. We also worked together on editing for grammar and flow, but the words are all Caley's.

On Society, Gratitude, and an Awesome Stranger

5/24/2014

When I was younger, or even two years ago, I never understood why my mother and other parents would be filled with such disproportionate amounts of gratitude for the tiniest acts of kindness others showed their autistic children. To be quite honest, I thought it was a bit offensive. After all, you wouldn't be grateful for someone treating a neurotypical child like a human being. Why be grateful the instant that child is autistic? To me, it implied the parents perceived their children were somehow defective or less worthy of good treatment.

In short, I was very, very wrong and owe those parents a giant apology. Because as a caregiver for a child on the spectrum, I have noticed myself developing that same overwhelming amount of gratitute for the kindness of others. Treat him well and I will be grateful. Play with him, and I will love you forever.

And now I get it. It's not about the child. It's about society. I see the child I care for as every bit as worthy of respect, kindness, and love as any other child. But I've learned, through caring for him, that other people don't always feel the same way. The lady at McDonald's who hunkered down and ignored him. The dad at the park who acted like he didn't want his child to play with the child I care for. The starers - not the ones with the compassionate eyes, but the ones whose eyes look at you in disgust and say, 'Why are you letting this child behave like that?' People seem to show their true colors more often, and WOW there are a lot more intolerant people in the world than I'd realized. It's disheartening.

But every so often, you run into someone who's the opposite. A person who sees the child on the spectrum as someone worthy of care and respect. Because having those sad moments, the moments where you see the darker side of how people treat those who don't fit it, makes the good people stand out even more.

Two days ago, I had the fortune to meet one of those people. And I was just drowning in gratitude. The child I care for had been attempting to play with her boys (which is pretty cool in of itself), but they weren't playing with him. What did she do? She got a game started, with her and the child I care for on one team, and her boys on the other. She patiently coached him through the game, made one of her boys lend him a toy gun so he could play, too. It was a lot of effort for her, and she ran around with them (again, coaching the child every step of the way) for a good twenty minutes, and then helped the child climb up the ropes course.

It was amazing and wonderful, and she didn't have to do any of it...but she did. And she wasn't just playing to play, or for the sake of her children. She did this because you could honestly tell she cared and it mattered to her that the child I care for had fun and a great experience. By the time we had to leave, the child I care for had been able to participate in a game with children his age way more complex than he'd normally be able to do, the mother was all hugs and love (as she'd been through the whole experience), and her boys were begging me not to take him home.

And that overflowing amount of gratitude I mentioned? Two days later I still feel it. And I am eternally grateful. My only regret is I wish there were more such people in the world; we could truly use them. The society I'm working for is one where these moments aren't out of the ordinary, where people understand autism and treat people on the spectrum the way they deserve to be treated.

But in the meanwhile, I am very, very grateful.

-Creigh

On Stimming and Authorities

5/24/2014

Originally published 5/20/2014

So today I witnessed someone chastise a child for stimming and grab his hands multiple times to stop him mid-stim. (Which is a GIANT no-no in the Autistic community, and the sight of which would make Caley incredibly angry. I limited myself to covering my mouth in horror.)

Me, broaching the subject carefully: "Have you ever heard the argument that you shouldn't stop a child from stimming?"
Person: "Yes, if the child is just doing it to entertain themselves, but if the child is stimming due to anxiety or stress, that's non-functional."
Me: "...but, dealing with anxiety and stress IS a function."

*face palms*

If I thought there was even the tiniest chance of them listening to me, though, I would totally have some long conversations with people about stimming, using a child's special interests, squishes, and the power of positive reinforcement. (And yes, that child can tell if your reaction is genuine or not.) But I'm just blown off every time.

-Creigh

Vaccines and Autism

5/24/2014

Originally published 5/20/2014

Be patient with me here – this is going to be a long post because these words have been a long time in coming, and I’ll admit that I am absolutely terrified to say them. I have kept my thoughts about vaccines and autismout of the website, where I dared include only one small footnote, and this Facebook page. Not out of lack of desire to talk about it – I’m actually pretty passionate about the subject – but out of fear of being hurt and of hurting others.

I personally know many parents who have differing beliefs from mine on this subject. Yet I have never told them this, because vaccines and autism isn’t any old topic, it’s a subject that divides the autism community like some kind of demilitarized zone. They who dare to broach it are denounced by the opposing side, whichever side that might be. It’s to the point that I’m quite sure if I mentioned my thoughts in person to some of the parents I know, our relationship would be severed. Worse yet, I would have hurt them in saying so, for I would be perceived as questioning their perceptions of reality...and many might even see it as me questioning their parenting.

As a result, I’ve kept relatively quiet about the subject, only discussing it on occasion to either those new to the autism community, who had yet to be polarized, or with those I know outside the community.

Why am I breaking my silence? I had a wakeup call. I was browsing Facebook, as you do, and saw one of my friends had posted an article about a photo shoot of fifteen survivors of meningitis. Many of them were children; all of them had amputated or deformed limbs. I commented on her post, letting her know that this was one of the many reasons I believe vaccines are so important. Melanie messaged me back, telling me that she, too, was a survivor, and drew much of her fervor about the importance of vaccines from her experiences. What she told me made me realize that keeping silent was unconscionable. I’ll let Melanie share her thoughts with you in her own words:

"I believe that I would not be deaf today if vaccines for bacterial meningitis, a serious and life threatening disease, had been available in the 1990s for young children. I was lucky; I’m alive. I bear no other scars, such as amputated limbs or mental illness. Others were not so lucky. In Canada, the occurrence of vaccination preventable strains of meningitis have been more than halved thanks to increased awareness and vaccination programs. However, meningitis continues to affect those who are not vaccinated or are unable to be vaccinated. Recently, Canada approved the Bexsero vaccine, which is the first to protect against meningitis strain B. I will be receiving this vaccine for the benefit of myself, and others. I have friends who are pregnant or recently gave birth, who are afraid to venture outside of their homes in the first measles outbreak in over a decade.

How can this disease, which was virtually expunged in Canada, still be a concern? Meningitis, measles, pertussis, and a host of other “childhood diseases” continue to maim and kill children at alarming rates in less privileged countries. Yet here we are, worrying that vaccines cause autism, cancer {insert a hundred other diseases here}, and turning down potentially lifesaving treatments for our children. Science has established that there is no causal link between vaccines and autism, while the benefits of vaccinations have been proven countless times. My parents would have given anything to prevent me from getting ill. My friends resent being robbed of their sense of security for their unprotected newborns because others are choosing not to vaccinate. While it is your choice to not vaccinate, please be aware of the responsibility you hold and the impact of your decision on others."

You heard her: she’s lucky. Her experience is just one example of what we have to gain from vaccinating our children, and what we have to lose if we refrain.

Now, I can hear protests coming from the other side of the vaccine DMZ already. ‘Her case is different,’ they say. ‘Our problem is with [MMR, vaccine schedules, thimerosol/mercury, fill in the blank].’ Others of you may echo Jenny McCarthy’s sentiments when she said, “If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f--king measles.”

But what McCarthy fails to realize is that vaccines, no matter what schedule they’re given on, which preservatives are contained within, or disease they serve to prevent, DO NOT CAUSE AUTISM.* “The f--king measles,” on the other hand? It can kill people.

The results of contracting vaccine preventable diseases can be disastrous, as you can see in this video of a baby with pertussis, otherwise known as whooping cough, someone sent me to show the dangers inherent in a world where we aren’t vaccinated.

That baby made it. Others, like this sweet baby, whose mother held her in her dying moments, don't.

Babies like this one, and those of Melanie’s friends with newborns too young to be vaccinated rely on something called herd immunity to keep them safe. And all over the world, we are losing that immunity. Because one parent’s ‘individual decision’ to not vaccinate their children suddenly isn’t one parent’s decision if it’s one of many that can cause other children to fall ill. Because of this false dichotomy in which parents believe they’re “choosing” between vaccine preventable diseases and autism.

Now, you may think, as an Autistic person, what does Caley have to say on this topic? She is just as pro-vaccine as I am; perhaps more because her Public Health major has taught her their importance. I say all of this, as a result, with Caley’s full support. She finds it rather offensive, in fact, that some people want to prevent her from being (which is how she sees it) so much that they’d rather expose their children to potential illness. In fact, she was the one who pointed me to the video of the baby with whooping cough, to further emphasize the dangers of avoiding vaccines that she’d learned still more about in her Public Health major. What’s more, she said that measles and polio were well on their way to being extinguished forever, as small pox was. Now, far from receding, the anti-vaccine movement has led to their resurgence.

Listen to Melanie and Caley. The risks of autism due to vaccines have been disproven. But the risks of death, injury, and illness due to vaccine preventable diseases are very real.

A note: I do not seek to convince any people who are adamantly anti-vaccine, those who refer to themselves as anti-vaxxers. If you are one, you’ve heard these words and seen these studies time and time again, and still held on to your belief. More words from me are simply that, words. Instead, I seek only peace and hope that you will not take our disagreement on this subject as reason to devalue the other posts from ASE. Please know, I do not say these words seeking to attack you, and I would greatly appreciate not being attacked in turn. And please, and this comes from all three of us, while it is your right to not vaccinate, please don’t take your unvaccinated children to visit immunocompromised or ill people, or infants too young to be vaccinated. And know that I still have the utmost respect for you, and our disagreement on this subject does not impact that.

If you want to argue with me on the topic of vaccines, that is your right, but I would prefer you do so via private messaging. I say this because I want to keep the comment thread on this particular post free of vitriol, which is pretty bound to happen if we get to arguing. Questions about vaccines and autism, however, are welcome.

*I’m going to link to a WHOLE bunch of studies here. I could link to more, but I think you get the point.
The biggest and latest one is here: a meta-analysis of five studies covering 1.26 million children and another five case-control studies of 9920 children.http://www.forbes.com/sites/emilywillingham/2014/05/15/vaccines-thimerosal-mmr-mercury-not-associated-with-autism/

Articles about still more studies:
http://www.sciencebasedmedicine.org/reference/vaccines-and-autism/
http://www.skepticblog.org/2010/09/13/the-long-awaited-cdc-trial-on-thimerosal-and-autism/
http://www.slate.com/blogs/bad_astronomy/2008/05/12/vaccines_do_not_cause_autism.html
http://theness.com/neurologicablog/index.php/when-does-autism-begin/
There are MANY more where those came from, feel free to message or comment with any questions and I’ll try to find a study to address your specific concerns.

-Creigh

Conversational Minefields

5/24/2014

Originally published: 5/19/2014

So last night the family and I were visiting a relative's house and someone (neither Caley nor I) brought up the subject of mainstream education, as in whether or not students with disabilities should be allowed to take classes with other students.

Caley and I both immediately tensed - Caley because this subject is very triggering for her, considering her elementary school tried to kick her out when she was in fifth grade (despite the fact that she was an honor roll student), and me because, well, I know how triggering it is for Caley. Immediately I, of course, tried to change the topic...but succeeded only in changing it from schools to autism itself, which is potentially even worse!

Bless our grandmother, she actually handled it well, listening to what Caley and I had to say and mostly avoiding offense. But it made me realize what a minefield such conversations are to navigate for people who don't know much about the disability and/or autism community. They don't know it, and even I didn't think about it until last night, but one wrong step, even saying something that most of the world sees as just common sense, can actually be very upsetting and offensive to their audience.

I took several lessons from this conversation. First, giant kudos to our grandma for navigating that conversation without incident. It's a lot harder to do than you'd think, and says a lot about her that she managed to do so. Second, we need to educate the world at large, but especially the friends and relatives of Autistics, who are likely to run into these issues more often than others. And finally, we need to be understanding of people when they do accidentally step on one of these proverbial mines. We should correct and educate, yes, but always with compassion. After all, if we've never taught them any differently, how would they know?

-Creigh

A Sister Team

5/24/2014

Originally published 5/18/2014

I am so very blessed to be part of a sibling relationship which is so close and where we so get each other. Caley gets melty* sometimes, and I don't take it personally when she acts differently from the way she normally does as a result. It's not her feelings towards me, it's just her reacting to the situation, and I honestly don't think twice about it.

Today Caley reminded me that this goes both ways. I am an introvert. I love being around people, particularly in a caregiver or teacher role, but I REALLY need my alone time, too. Recently, I haven't been getting that. Between working six days a week and other responsibilities, I'm always around people. I love the job, mind you, but as a caregiver I am definitely never alone. Add to that the fact that Caley and I are sharing one small room over the summer...and my much needed alone time is an artifact of the past.

As a result, I've noticed myself getting rather snappish lately sometimes when Caley tries to interact with me after I get home. Normally I like talking to her and hanging out with her, but now when I'm home when I finally get some peace, I feel like Gollum**, jealously guarding my treasure. It's not conscious and I pretty immediately realize I'm acting out of character and apologize, but it happens. And every time it does, I feel absolutely terribly guilty, so I push back down my feelings with an added dose of guilt. The guilt was even worse because Caley's very sensitive to others' emotions, and if she thinks someone's angry with her it leaves her very frightened.

Finally, I figured out what was going on and I pulled Caley aside for an even bigger apology than the previous far too many to count. It wasn't her fault, I told her, I just wasn't getting alone time and I was really really super sorry for how I'd been acting. I was particularly sorry, I said, because of how I knew I was making her feel upset when I got snappish.

And you know what she told me? She told me to please stop apologizing, that I understood it when she got frustrated with me when she was melty, and she understands that in the same way it's not personal when I do the same thing. She told me the only thing that bothered her was that she worried something was wrong since it's uncharacteristic for me to act that way. (But she knew nothing was too terribly wrong, because apparently I act very calm when terrible things happen. If I was calm, she said, she would have been nervous. I'd never even noticed that about myself before!)

So there we go. Guilt, gone. And I have a plan to get myself more alone time, too. (Which mainly has involved actually telling people no when they want me to do something for them.) So the problem should be taken care of. But something good came out of it - a reminder that Caley gets me as much as I get her. We're a good team, and I'm glad she's there for me through thick and thin - I'm more than happy to return the favor. I love you, chica.

Also, parents of the world, for whom the alone-time-less scenario I described is not out of the norm, but part of daily life, know that I have a very deep sense of respect for you!

-Creigh

*Melty is the term I have deemed the stage pre-meltdown...where you're at risk for melting, but haven't quite reached the full thing yet.

**She read the bit about being like Gollum and told me, mid hug, that I was the best Gollum ever. She assures me this is a compliment, because "Gollum isn't awesome. And you're awesome. Therefore you're the best Gollum ever." Not sure if I quite follow the logic, but hey. Also, I have the best sister ever.

Autistic as an Insult

5/24/2014

Originally published: 5/18/2014

Normally I love to watch language evolve, but lately I've noticed one development that I loathe: the evolution of the word autistic into an insult. It fills me with anger and frustration whenever I see this happen, and every time I see it I set the user straight. But this time another commenter beat me to it. Here's a snippet of what they had to say:

"Are you kidding me? Did you just start using the word "autistic" as an adjective to denigrate an entire subsection of our society? ... It is people like you that make people like me constantly change the words I use for certain disabilities, because you think so unfavorably about them that you turn the terms into insults. Note: the autistic spectrum is filled with some of the world's smartest and most creative people."

It filled me with joy to see this. So often it can feel like a lonely battle, fighting against stigma and discrimination with only a handful of allies, and I know most of you have experienced that same frustration. Yet this time, far from feeling saddened and alone, I felt joy, joy which I wanted to share with you all. Because this comment was just a tiny reminder that we're not alone in our fight for what's right. We're part of a bigger movement, and small moments like this, dear readers, are how we achieve change as a community.

-Creigh

Note: When Caley read and approved this (as she does with all my posts), she gave the commenter a standing ovation. I don't have an account on the site this was posted on, but if you read this, Ryan Friend, giant props. Also, to anyone who's curious, the article that spawned the comment thread of which Ryan's words were a part wasn't even autism related - it was about Soylent, of all things.

About Creigh

I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.

*Note, none of these make me a professional, so advice I give is not professional advice.

Top Posts

On Self-Advocacy
Difficulty with Changes
On Parental Guilt
Transition Time!
My Autism Speaks Story
A Tale of Two Sensitivities
Autism and Haircuts
Cause of Autism
Vaccines and Autism
Happiness's Variations
I Cannot Call Caley Cute
The Power of Listening
Her Autism is Worse
On Preventing Bullying
Autistic Parenthood
Facing Discrimination
Stimming's Function
On Anxiety

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Blog Info

Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook.

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Disclaimer: The author of this website is a speech therapist, NOT a psychologist, and frequently writes based on personal experience. As a result, advice given here may not be completely accurate and may not apply to everyone. The author readily admits to having a lot left to learn. In addition, most of this website was written before the author became a speech therapist and is thus not written from a professional perspective. This website should not be used in place of a professional. The author is not responsible for the content of other websites for which links have been provided, nor content from other contributors.

Published: 3/09/2013
Last Updated: 11/14/2017

Photos used under Creative Commons from madmiked, Jim Larrison, Purple Sherbet Photography