Tuesday, May 20, 2014

The Pizza Analogy (No more free lunch)



If you ask me, much of parenting revolves around whether or not we teach our kids not to be selfish/self-centered. Sometimes, it’s pretty cut and dried. If a family orders one pizza for dinner and the ever-hungry teen takes the entire pie to his room before anyone can take a slice – and no one says anything – we can all agree that family has allowed the son a selfish moment. Another family orders one pizza for dinner. The kids rush to grab a slice, but dad has them wait until mom is seated at the table. (What an awesome dad to ensure mom is actually sitting for dinner! Ah, hearkens me back to “A Christmas Story”; “My mom hadn’t had a warm meal in…” But I digress.) This family is teaching their kids that dinner is a collective experience. Everyone needs to eat, meaning each member of the family should be sensitive to the hunger of the others, even if this means taking a little less than they’d like. It’s a lesson in being selfless.

Being in a field where charities abound provides a unique perspective on giving. For most, money is tight but the need for advocacy, education and learning about girls on the autism spectrum is great. I still do what I can, but over the years it has come with a cost. This caught me by surprise. When you are in this position, the number of people who approach you to write (for free), speak (for free or for “lunch”), endorse and give is astounding. Early on, I did this with gusto. After all, my belief was we were on the same page: advancing the knowledge of autism in girls. 



After a while, the costs (time and money) of doing this added up, and started putting us in the red. I really struggled with charging for my time because I believed in good faith I would be compensated, even if only a small amount. I was wrong. It became clear that for some people, it is more about who they could get for as cheap (read: free) as possible to accomplish their goal. I recall one conversation when I finally decided to request my going rate. I was snapped at. Ironically, this individual was getting paid to ask me to work for them for free. I spoke to a few peers who encouraged me not to feel badly, as authors do need to eat, have shelter and take care of their families. And, no, most of us don’t make much at all, contrary to what life was like for authors 20 years ago.

Since then, I took a few months to think about what I can realistically give of my time and finances, and where to place the boundaries. I have joined with a group of moms where my monthly blog is now accessible, and am thrilled to be a part of their team. This I continue to do without compensation as I believe in their mission, and is the only such agreement I have. It satisfies my need to contribute to the greater good without burnout. I also chose to create a private “list”, per se, of charitable causes I will contribute to, as able, as it is impossible to give to everyone who asks. And, honestly, after raising a “spectrum kid” and taking on too many “gratis” events, I’m still working to get back to where I am earning a living as opposed to giving it away. (This is why I run an Etsy shop and Zazzle storefront.)

This brings me to an already mentioned uncomfortable topic. And I’ll tell you right now it is awkward, and likely will not apply to most of you reading this. Those of you who know me well understand how hard it is for me to put this in writing for all the world to see. (But you also know my heart, and I thank you for that!) It’s about doing things for free. Here we go…

If you want me to write or speak for you, I will gladly do so, and can quote you my rates. Yes, this is awkward for both of us, but it takes time to do these things, and do them well. I do offer discounted rates for certain groups. I am unable to barter.

If you would like me to donate to your cause, kindly accept “no” if that is the answer you are given. Yes, I know $20 (or so) isn’t much, in a sense. But when people continue to ask you to give, it is impossible to give to all who ask. And I have a ton of people who ask. However, I will gladly look into your cause and may consider it for the next calendar year.

If you want me to follow you on social media, promote your work, etc., etc., take a moment to ask yourself “why?” Are you trying to boost your numbers, for whatever reason? (Yes, I can’t begin to tell you how many people follow people – even in the charitable world – then unfollow them to make their numbers look good. Truly sad.) Is this something you really feel passionate about? If I were to ask you to do the same, how would you feel about it? (I do promote that which I believe in, when I have the time.)

If you disagree with my perspective, will you move forward to present your own in a polite manner? Or would you rather work to tear mine down? My perspective is just that – mine. It is the perspective of a mom of a child with Autism Spectrum Disorder, who has engaged with countless others on the Spectrum, as well as those who are parents or teachers of them. (Mine is not the perspective of a counselor or physician, to be clear which, apparently, has to be spelled out for some.) My family welcomes the perspectives of others and we do fully realize they will vary. We are strong proponents of listening to other voices. How else will others begin to fully understand girls on the autism spectrum if we mute or discount them? And my daughter does know when others talk smack. She has worked so very hard to overcome obstacles Asperger’s puts in the way. Would you say these things to her face? She reads them. She knows. This does not apply to most everyone. Thank you to the MAJORITY of you who have been so encouraging and life-affirming!

This brings me back to the Pizza Analogy. Throughout this journey I have met countless selfless individuals whose goal really is to make a difference. Like anything else in life, a few loud voices work to squash a mountain of good as all they can see is their own desires, whatever they may be. Others push so hard for their cause, that if you don’t “give”, you must not be on board. In doing so they foster resentment instead of compassion. Once I realized the “guilt” I was feeling was an outcome of working not to make others upset or disappointed in me and rather a result of them not getting what they want vs my own goals and principles, I was able to move on to both make a difference and (financially) support my very own Aspergirl. (Yes, not all who ask are self-centered – not by a longshot, but those who perseverate or bully are. Yes, I have been bullied by an adult since releasing my book.)

Folks, there is more to life than money. I gave much of that up to raise an Aspergirl who is now headed to college. She will thrive there because of the work she has done to get to this point, which started with both mom and dad in the early years. I gave up going after a career and financial security for years of therapy visits, social skills training, etc., for her. And it is paying off in spades. After all, she is our daughter, our charge. It’s about getting her to where she is able to live on her own and make a positive impact on the world around us. And she is headed there, full steam ahead.

Throughout this journey of the past several years, I’ve learned quite a bit. I’ve met incredible moms, dads and Aspergirls. I’ve gotten to know renowned experts in the field, and am the better for it. But alongside these positive life experiences is a side I was completely unprepared for. Autism is a passionate, complex subject. In part, that is why I wrote “Asperger’s in Pink”. I wanted to share our story to help others. Money or fame was never the goal – or even annoying people. It was simply to tell a story from a mom’s perspective. My daughter read the book before it went to print and gave her approval. My husband virtually runs the Facebook page now. It is, indeed, a family affair. In fact, Kristina has written a work of her own, and is waiting to see if it will go to print. It’s her turn to have her voice heard without mom. At least she knows what the road ahead will look like.

Thank you for reading to this point. This has to be one of the most awkward blogs I’ve ever written. But a few things have happened to birth it. Maybe now my mind will be free once again to do what I love to do – write.

All the best,

Julie

Friday, February 21, 2014

Sensory Processing Disorder Gets A Spotlight


IMPORTANT! FUTURE HORIZONS HAS CANCELED THE CONFERENCE FOR NOW          

 On the way out to run some errands, my garage door opener decided to get a little moody. It’s an older door with the original clicker, so knowing precisely where to push is key to getting the clunky rectangular box to cooperate. I sat in the driveway, tried all the tricks in the book, but nothing worked. Timing is everything, and as I was in a rush to beat the next winter storm, I closed the garage manually and went on my merry way.
            Then it hit me.
            Nova recently tweeted a quote from Thomas Edison, which hit the nail on the head: “When you have exhausted all possibilities, remember this; you haven’t.”
            The answer was right in front of me. Try replacing the battery.
            Duh.
            Guess what? It worked.
            Isn’t that true about so many things in life? We assume addressing problems the same way will always solve them. If that approach doesn’t work, then the problem “must” be faulty equipment. In my case, I assumed the garage door opener finally bit the dust (not an unreasonable hypothesis, due to its age). At home or school we may blame the lack of discipline for difficulties with the kids, when the root of the problem, such as an underlying illness, is overlooked. Thankfully, we can choose to shift our perspective and remember Edison’s quote. Have we truly explored all possibilities?
            As my daughter comes into her own, it’s interesting to discover the things that she is passionate about. I’m not talking Special Interests here.  Heaven knows she’s always had those in spades. Disney films.  Animals. Now the Hunger Games saga. What I’m talking about here are things she cares deeply about and wants to help others understand. One such thing is Sensory Processing Disorder (SPD).
            Sensory Processing Disorder affects how others interpret and react to stimuli, and this reaction varies tremendously. Some can detect scents or sounds from what seems like a mile away. For others, it can be lighting, touch and so on that make life a richer though more treacherous journey. No matter how each individual experiences SPD, the effects on that person are very real. Unfortunately, this can result in difficult situations. During this winter that has no end, it may mean getting off the bus in sub-zero temps with no coat, no gloves, no hat because, “Mom, I don’t feel cold, so why do I need to wear these annoying things?” Other times, it can lead to behavior issues in the classroom, which are often addressed using the same old methods, instead of identifying the root of the problem.
Dr. Temple Grandin used with permisson
            Some with sensory sensitivities will work to avoid situations by placing hands over ears (or eyes). Others will melt into tears. Some will have outbursts while others hide under a table. Just as triggers vary, so do the reactions to them and the personalities behind them. The concept of poor discipline as the root cause of these behaviors really has very little, if anything, to do with these responses to stimuli. Dr. Temple Grandin addresses sensory concerns regularly. In fact, a quote on her website from her book, “The Way I See it”, sums it up eloquently: "I have been talking and writing about sensory problems for over 20 years, and am still perplexed by many people who do not acknowledge sensory issues and the pain and discomfort they can cause.  A person doesn't have to be on the autism spectrum to be affected by sensory issues."
            Kristina now tells her story, herself, of the time she was in elementary school at yet another way-too-loud-for-her assembly in the gym. After years of holding it in and covering her ears as tightly as possible, she discovered legs work better than hands in removing herself from a sensory onslaught.
            She took off.
            You can imagine the reaction of the teachers – and the following calls home. As parents, we were so very thankful for the individual who provided gentleness, patience and understood she was in immense pain and reacting to it. We remain discouraged by another who chose to scold Kristina and interrogate us about our home life (the standard approach), appearing reluctant to accept the reality of SPD and how that was the underlying reason for her behavior. To be true, poor behavior is an issue in our schools that does not appear to be resolved any time soon. But how we approach behavioral problems makes or breaks the child. We cannot afford to take a “one size fits all” approach.
            As I meet and speak with families of children on the Autism Spectrum, one things rings clear; many feel their child is sorely misunderstood, leaving the family to blame for pretty much everything. It’s heartbreaking. It all boils down to understanding the root, doesn’t it? In fact, Dr. Jim Ball, Ph.D., the lead speaker at the upcoming conference in Raleigh says, “Sensory issues are often the ‘elephant in the classroom’ because the behavior problems are visible but many do not understand some of the major causes so they can be addressed in a way different from those that are caused by lack of discipline.”
Photo by Julie Clark (copyright 2014)
            Oddly enough, my husband, who understood (intellectually) our daughter’s sensory struggles, became personally familiar with this issue after his brain bleed. (You can read about that HERE.) He's always known it, respected it, but hasn't always understood it. After his stroke, he could relate. Sounds were impossible, and talking on the phone was not an option. Lights that flickered and flashed were unbearable. He commented that he always knew certain sensory stimuli were hard for Kristina, but now he "knew" (experientially) it. And it made certain places and situations very difficult to deal with. In fact, trying to convince others he could not physically handle phone conversations was virtually impossible, and downright irritated some individuals. But it made my husband incredibly sympathetic to his daughter, as well as her struggle to convey these difficulties to others.
            One thing I love about my publisher, Future Horizons, is their commitment to understanding - to education and improving the lives of those on the Autism Spectrum. This also includes those with SPD (including many who do not have autism). They accomplish this work through publications, as well as amazing, practical conferences. On Friday, April 11, 2014, Future Horizons will be in Raleigh, NC, presenting a Behavior Strategies Conference. I absolutely cannot wait! The speakers are Dr. Jim Ball and Maria Wheeler, M.Ed.  They are two of our nation’s leading authorities on behavior problems, and will share strategies for helping those whose sensory issues impact behavior, among other things. This is beneficial for both teachers and caregivers, and I’m excited learn their insight.  If you’d like more information, please go to fhautism.com, or click HERE for the direct link.
            Have you been to one of their conferences? No? My sister, who is a Special Ed (EC) teacher, speaks highly of the one she attended, saying it was, by far, the most practical and interesting she had been to, providing her with tools she could immediately take back to the classroom with her. I am thrilled that the focus of this conference is behavior in light of sensory stimuli. It’s sorely needed.
            And, no, Dr. Grandin won’t be at this one, but it will still be fabulous, as they always are. If you can make it, there is plenty of time to sign up. I’ll be there, too, so please stop by and say, “Hi!” I’d love to see you there!

~Julie

Thursday, February 6, 2014

I'm Getting a Makeover!

I'm getting a makeover! No, not dying my hair red and redoing the wardrobe, though a beauty do-over sure would be nice. If you follow my blog, you know that about a year ago I started blogging for We Know...Stuff. It's an incredible family-friendly blog, and I plan to have a new post there each month, along with several other wonderful bloggers. As a result, my personal blog has sat, covered in cobwebs and such. Add to that, life happened, as it does to all of us, putting much of my personal writing on hold. Thankfully, the clouds are parting and the sun is starting to shine just a bit. Now that I'm back at the keyboard, it's time for a redo.

Would you like to take a peak?

I am unveiling a new website: AuthorJulieClark.com

Here you will find the latest news about me, including appearances, projects, and links to my latest blog posts. Yes, some will remain here, but AuthorJulieClark.com will have the latest and most reliable information. (Eventually, I hope to incorporate my blog right on the site.)

New to Asperger's in Pink? Or looking for a refresher? I'm a mom with a daughter on the Autism Spectrum. My book is our story, told from a mother's heart, from our family's perspective. It is also full of strategies that have helped many families navigate the world with a child on the Autism Spectrum (boys included!). My daughter, Kristina, even has a short story of her own at the end. (And I am humbled that Dr. Tony endorses it, too!)

The bottom line is I remain committed to increasing awareness of girls on the Autism Spectrum. I'll leave it to the doctors and therapists to diagnose and such. :)

Have a great day!

~Julie
At the ASNC conference in 2013, with the Andersons

Monday, May 20, 2013

Teaming up with We Know…Stuff!



Have you read the blog We Know…Stuff? It’s absolutely fantastic. It’s family friendly and full of scads of tips, recipes, kid friendly crafting, and gorgeous images that are worth a second look. It is run by two amazing sisters, Denine and Daniele, that are down to earth and the real deal. And if you know me, you know that being true to who you are is incredibly important. They've asked me to be a Guest Voice there, and I am honored. Each month, I will be contributing an article addressed to families with Special Needs.

Head on over, check out a few articles, and say, “Hello!” Tell them I sent you, too! If you like what you see, sign up for the RSS feed, and follow them on Facebook or Twitter. 

Enjoy!

Friday, March 22, 2013

Autism Rates and the Stock Market



The latest news has social media outlets abuzz. The numbers have changed, again. In less than eight years, we’ve seen them more than triple. Experts discuss the reasons behind the change while so many watch and wait for the numbers to shift, yet again. In this business, digits are followed with great anticipation and endless postgame analysis. Some sign on, catching the freshest wave, while others join in, hoping to cash out a little before the wave crests and falls.

What I’m about to say will be seen as controversial to many, and maddening to some. And I’d bet the house, if I was a betting lass, that a few will misconstrue what I aim to communicate, as we all come to our own conclusions, bringing our built-in biases and backgrounds. I suppose it’s blog with a dash of a rant, and I welcome your comments below.

The stock market affects each and every one of us, whether we are personally vested in it or not.

Those with autism are becoming merged with the stock market mentality. And I can’t stand it.

When my daughter was diagnosed with Asperger’s (soon to be folded under “Autism Spectrum Disorder” – Asperger’s isn’t going anywhere. It’s just a name change.), watching the rates transform from 1:166 to 1:115 to 1:88 – and now to (purportedly) 1:50, has been incredible. Personally speaking, I still do not think the numbers are correct. For one, girls continue to be misdiagnosed or undiagnosed during the school years, which means many are not counted in the latest data. Add to that how the data was collected, and I sit here scratching my head a bit. But this post isn’t about that, at all. It’s about the numbers game.

Like many of you, I’m on Facebook, Twitter and Pinterest. I’ve seen so many talk about the rates while sounding the alarm bells and it has me concerned. It’s almost like watching the stock market: Can we remain above 14,000? What if we dip back under 10K again? What if we truly are on an investment bubble and it all comes tumbling down? Instead, we’re watching the autism “market”: What if rates keep increasing? What if it becomes 1:40? Or 1:25? What on earth will we do?

And, like watching and fretting about the stock market, many ask, “How do we stop the ‘worst’ from happening?” Some join the conversation as it appears the “in” thing to do while others ask, “How do I cash out?”

I’m not liking that vibe, folks.

Let’s be clear, autism is a spectrum. It is incredibly broad and diverse, and those of us who live and breathe it every day have the mantra, “If you’ve met one person with autism, you’ve met one person with autism” furrowed in our brows. Yes, there are so very many beautiful souls with communication and self-care difficulties who could truly benefit from something that will enable them to live independently. But there are so many others who do, indeed, move on to marry, have families, and hold down incredibly powerful careers. In fact, another mantra privately uttered by so many on the “Aspergian end” of the spectrum is often, “I don’t suffer from autism. I suffer from those around me who refuse to take time to understand me or accept me for who I am.”

Share if you like!

Let’s break it down.

About that “fix,” stopping the “worst case scenario”. Imagine being a teen. Remember those years? Even with the best of experiences, moodiness rules the day. It is what it is. Imagine being a teenager on the autism spectrum and reading all the news, hearing how others see you as having a “problem” and needing to be “fixed,” with the added “concern” that more and more people are becoming like you. How would it make you feel?

I know how it makes my daughter feel. It makes her fight for her self-worth. It makes her want to burrow her Asperger’s as far into the ground as she can, living under cover so she can move about her life “undetected”. And this rush to rage against the numbers is hurting so many like my daughter who want to be accepted for who they are. Not who the majority wishes they be.

Please, stop the rage. Turn it into passion for understanding and sourcing therapies that will be of benefit. Turn those powerful emotions into making a positive impact.

And about those who “buy in” to the cause of the day? Let’s face it; autism is, regrettably, seen as a “fad” for many unaffected by it. Unfortunately, this does mean some will be diagnosed who should not be. But it also means many will wear the ribbons and walk the …well…walks, but ten years from now they’ll move on to the next cause. It’s fickle. And is how some operate.

Please, don’t “buy stock” in autism because “everyone else is doing it”. Do it because you believe in it. Just as you would buy stock in a company you have faith in. Otherwise, you’re “buying in” for either a simple return on investment or to say, “I have a share in ‘Autism Co.’. Do you?” Those of use connected to autism are ambassadors, whether we wish to be or not. It’s part of the package. We’d love you to be fully vested with us, but serious buyers, only, please.

And now a word to those who see green. There are two sides to this coin.

Unfortunately, there are those who may see this as an opportunity to “cash in”. Wow, does this one bother me so! No, I am hardly naming names. But there may be a few who want to ride this wave. Autism is not a penny stock. This is not a Bull Market. It’s a way of life for oh so many of us. Make your money somewhere else.

On the other hand, there are those who are resentful when others do make even a dime from their advocacy work. Please know that most people who work to create autism awareness and acceptance do it with a passion to truly make a difference. Yes, some will financially profit (books and speeches do take quite a bit of time and resources to write and promote; therapists and teachers, as well as those who craft awareness items, need to pay the mortgage, just like the rest of us), but most will not be motivated by money at all. (Remember my introverted husband next to me on stage? He did it due to his passion for Asperger’s – not attention. He’s more comfortable behind a keyboard than a microphone, for sure!)

Please, let’s stop seeking out the latest numbers on autism as if we are watching market trends. Autism is not the stock market. Autism defines the lives of so very many people. If the numbers concern you, consider using that energy to work for understanding and acceptance of what autism is – and what it is not.

And, I’ve gotta say to my fellow autism peeps; let’s use this energy to understand each other, as well. In the autism “family” (we are a family, folks, to invoke the sentiments of my friend David from the Autism Society of NC), we need to work to understand the opposite side of the spectrum on which we are standing. But ‘tis a topic for another time.

Somehow I can’t help but feel this blog carries more negative energy than positive, and I regret that. But sometimes it is important to point out trends, and I hope this will spur you onward to (re)focusing on autism awareness and acceptance. Instead of ranting and raving about the numbers, let’s see what we can do to support those who have autism, as well as to educate others who do not understand our beautifully deep and diverse spectrum.

~peace