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Friday, April 4, 2014

Authoring Awareness: Why Not Autism Speaks?

Autism Speaks "Light It Up Blue", has become a familiar campaign that many people are aware of.  For several years, we supported the campaign and the organization behind it.  Soon, I began noticing things that didn't sit well with me.  I no longer support them or donate to them.  The money is pouring in, the shout for a cure has been heard, and the awareness is there.  What's missing is a personal interest in improving the lives of those on the spectrum by asking for more than awareness and a cure. 

Not all children and adults on the spectrum need or want a cure.  Some just want to be understood and have the same opportunities as the rest of us.  With blue being the color of awareness, we've decided to embrace "lighting it up" more than blue.  Awareness isn't always enough.  Acceptance and understanding are needed too.  So is an organization that works to empower and support those on the spectrum so that they are seen as equals and worthy of the same rights that the rest of us are.  The Autistic Self Advocacy Network and other organizations that share their vision just seem to have more to offer those on the spectrum than Autism Speaks does.

I am not going to tell you that this decision is the only right one, because I firmly believe that everyone needs to do their own research and make their own decisions.  Part of being aware, is being aware of what you are being asked to be aware of!  For me, this organization makes more sense for the cause at hand.  I like where they are going with their campaigns and what they are working towards.

 From The ASAN Website:

"The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities. We provide information about autism to the public through a number of different educational, outreach and systems change related projects."

The link below will take you to a joint letter that addresses why this organization and others are calling for an end to the Autism Speaks support.  I think it will explain things better than I ever could. 

 2014 Joint Letter to the Sponsors of Autism Speaks


There are so many wonderful organizations out there, be aware of them all!  Find one that truly speaks for those on the spectrum, not just one that everyone is aware of because of a campaign.


   1)  Accept
            2)  Understand
       3)  Educate 
4)  Love

Let's "light it up" more than blue! 
I want to light up every color of the rainbow that is Autism Spectrum Disorders! 

Let's do more than be "aware" of Autism this April.  

Throughout the month of April, I'll be Authoring Awareness in order to promote acceptance, understanding, and love. 



Won't you join me and share this with others?


Other Authoring Awareness Posts:

1:  Authoring Awareness: April & Autism
2:  Authoring Awareness: What's Up With That Bratty Kid?

This post ends Week 1 of "Authoring Awareness", but I'll be back next week to blog about some writer-ly things, and I'll continue this series and share some amazing resources for those living at the end of the ASD Rainbow.  See you then!  And remember, awareness is only the beginning! 

Thursday, April 3, 2014

Authoring Awareness: What's Up With That Bratty Kid?

There you are, minding your own business in the cereal aisle at Walmart.  You're looking for some Shredded Wheat so you can be on your way, but then you hear a ruckus at the end of the aisle. 

You glance over and see a child much too old for temper tantrums losing it because Walmart is out of her favorite cereal.  You try not to stare, but truly, it's pretty hard to ignore it when the nearly pre-teen girl falls to the floor in a puddle of dramatic sobbing.  The mother kneels, a sad look on her face, and begins talking gently to the child, patting her back, and trying to soothe.  You roll your eyes.  No wonder the kid is a spoiled brat.  Her mother clearly has never heard of discipline! 

 Why, if that was your kid you'd bust that butt and tell her to stop acting like a cry-baby!  Geesh.  You slip a disapproving glance their way and the mother drops her head in defeat... but only for a moment.  Suddenly, she's the one shooting you an icy stare.  And... then she approaches.  Her jaw is set determinedly, and if looks could kill... buddy you'd be a dead man.  An instant too late, you wish you had just grabbed the cereal and made a clean getaway.  

The mother lays into you for being a judgmental jerk and explains that her daughter is Autistic.  In your haste to get away, you make a detrimental mistake, and apologize by saying, "I'm sorry.  It's just that, well, she doesn't look retarded."

IF you live through that, she might enlighten you about Autism Spectrum Disorders, Sensory Overload, oh, and the sheer ignorance of using the "r" word.  She might even roll her eyes at your stupidity or pat you sadly on the head.  

You leave the store, shell-shocked, but hopefully a bit wiser.   

 A) That is NOT your child.  B) Everything is not what it seems.  C)  It's not your business.  D)  You shouldn't judge anyone, ever.  E)  Never use the "r" word.  F)  Being "aware" of "autism" clearly isn't as good as accepting and understanding it.

Raise your hand if you've witnessed a  
Spectrum Meltdown.   

There's actually a way to tell the difference between spoiled-tantrum kid and struggling autism kid.  It's not easy to differentiate if you aren't in the know.  So, here's a chart to help. 

Maybe, you were like Shredded Wheat guy and didn't realize what you were seeing.  Maybe, you didn't consider that you were witnessing much more than a tantrum.  Maybe, you never knew that a spectrum meltdown is a painful and traumatic experience for children on the spectrum and their parents.  

That's okay, because from here on out, you'll not only be aware, but you'll know and understand what this "meltdown" business is all about.

Let me begin by telling you our story.  You should know before you begin reading that DH is "darling hubby", and we affectionately call our boys Thing 1 and Thing 2.  Thing 1 is the oldest, by twelve years.  Thing 2 is our Aspie/Autistic child.  Now, that you've got that straight, here's what it is like to be a spectrum family on grocery day.

My DH and I learned a long time ago (before Thing 2 was diagnosed) that one of the most stressful, awful, horrid things for us to do as a family... was to take a trip to the grocery store.

Thing 2, who is always a bit hyper, goes absolutely into over-drive when we go to Walmart.
I used to believe it was because he got  bored with the hassle and routine of getting the groceries.  I don't like grocery shopping, myself, why would I expect an active little boy to enjoy it?

My "solution" back in those days was to promise him that if he would behave until every item on the list was marked off we would go to the toy section and he'd be allowed to pick a new toy as a reward.  This had always worked perfectly with Thing 1, so it seemed logical to do the same with Thing 2.  There were three problems with my "solution".  First, Thing 2 isn't Thing 1.  Second, Thing 2 is very rarely interested in toys.  Third, Thing 2 wasn't bored.

I have learned in my Autism/Asperger's research,  Thing 2 was on sensory overload. 
The first thing you should know about sensory overload is that it is painful... excruciating even.

My "solution" then became DH and I go to get groceries on Sunday afternoons between morning and evening church services leaving Thing 2 at home under the watchful eye of his big brother.  It was the easiest solution for all parties involved.  DH and I could finish our shopping with minimal distractions, arguments, and stress.  Thing 2 could happily play his games or watch his movies.  Thing 1 just has to make sure he was breathing and remained uninjured for the hour or so we are gone.  Thing 2 is a breeze to babysit. Pop in a dvd or video game and he is entertained for hours.

But, all good things must come to an end.  Especially when your children are twelve years apart in age.  Eventually, Thing 1 got a job, and then left the nest.

We had no choice but to take Thing 2 to the store with us.  We thought about one of us going to get groceries and one of us staying home with Thing 2.  But helping Thing 2 learn to "deal" with the overload of grocery day seemed more important than our not having to "deal" with him.  After all, DH and I won't live forever, and some day Thing 2 will have to go to the store.

Our trip went as we thought it would.  Thing 2 was fine for about ten minutes.  Then he began wandering, making sound effects, touching everything, talking to everyone he passed, trying to touch or hug them, asking if we were almost done, complaining his feet hurt, asking what that noise was, who is coughing, who said that, why is that baby crying, and whining to use the bathroom.

DH and I spent a lot of time asking him to be quiet, stop wandering so far from the buggy, nagging at him to stop touching things and bothering people, and begging him to just please cooperate so we could get done!

By the time we left the store, I was stressed, DH was stressed, and Thing 2 was upset.  It was our "typical" shopping trip.

At one point I said to DH, "He really can't help it" to which DH replied, "Yes he can",  which made me wonder.... can he?  I really felt like there had to be some reason why Walmart and Thing 2 just cannot get along.  I couldn't argue the point with DH.... because I didn't know what that reason might be.

So my mission was to do more research.  I found what I was looking for!  He really can't help it.
In order to understand why Thing 2 "freaks out" and begins acting out in Walmart you have to be able to see things from his point of view.  I am learning that this is key to working with a child who has an A.S.D. (autism spectrum disorder).

When I am in the grocery store my mind is involved with what's on the list, being careful not to run into anyone with the buggy,  price checking, what to do when they don't have what I need, and getting done as quickly as I can.

Taking in Walmart from Thing 2's point of view was an eye-opening experience (no pun intended).

What Thing 2 sees-

Thing 2 is visually oriented (as are most children with Aspie's/Autism), so his sense of sight is probably the first to become overstimulated. His eyes are much more sensitive than most people's.

To Thing 2 the fluorescent lights are much too bright. (Think flood-lights.)  All this lighting pulsates and it hurts his eyes.

These throbbing lights bounce off everything from floors, shelves, and the products on them to the shopping carts, display cases, and especially those glass doors in the freezer/dairy sections. This distorts what he's seeing  making it seem as if the space around him is constantly changing.

The distorted effect coupled with the glare of the fluctuating lights makes it too hard to focus on the many objects around him. Because he can't focus he might be compensating with “tunnel vision”.  This is a coping mechanism for some children.

There are funny pipes, shiny globes housing cameras, fire sprinklers, and emergency lights on the ceiling - objects that distract him as he ponders what they are, what they do, and if they are dangerous.

It's crowded and there are so many people in constant motion. All this affects his vestibular sense (the vestibular sensory system, controls the body's sense of balance and equilibrium) and proprioceptive sense (the sense of the relative position of neighboring parts of the body and objects in one's vicinity) until he can’t even tell where his body is in all this distorted, changing, brightly pulsating space.

This explains why he's in constant movement as he tries to adjust.  For Thing 2, walking down the aisle in Walmart is like trying to walk through one of those spinning tunnel-tubes in a fun house while strobe lights are flashing.

What Thing 2 hears-

Thing 2's hearing is hyper-acute.

Dozens of people are talking at once. The intercom system is booming with "Joe, You have a call on line one."  There is music blaring from the sound system speakers. The cash registers beep loudly and cash drawers slam shut. Someone drops their pocket change and it scatters on the floor in a loud rain of clinking, clacking, and ricocheting.

The lady four aisles over is having a coughing fit, some men have gathered in electronics and are talking too loudly, there are two babies wailing on different ends of the store, four teenage girls are giggling in the clothing department, a young boy is yelling for his mother on the cookie aisle.
An elderly lady is riding a funny looking motorized thing that makes whirling, beeping, and clunking noises as she drives past.

The shopping cart wheels screech and squeak.  Someone passes by and their cart is making a thump-bump noise.  Another cart has two children riding in it, they are fighting and one is crying.
In the stock room there is a chaotic crescendo of thumping, banging, and machinery running.  The sound of the trucks being unloaded is echoing through the bays, and people are yelling to each other.

The fluorescent lighting makes an angry humming noise.  Freezer doors squeal as they are opened and thump as they are closed.  In electronics there are a bunch of television sets on and all are making a high pitched buzzing static noise.

And it's all being heard at the same time!  His brain can’t filter all the sounds.

Maybe this is why he makes his special-effect noises from the time we walk in the door until we exit to the parking lot.  If he cannot process all the sounds he'll just attempt to drown them out with his own.

What Thing 2 smells-

Thing 2's sense of smell is highly sensitive.

The lady stocking shelves is wearing a very floral perfume that makes his nose burn and his eyes water.  The man looking at the televisions reeks of cigarette smoke. The guy standing next to us in the pharmacy section hasn’t showered today, making Thing 2 wrinkle his nose and say a bit too loudly, "Eww, what is that stench?"  (Aspie kids speak their minds- always!)

The fish, chicken, hamburger meat, and pork have a raw distasteful smell even through the packaging.

There is a bad potato in one of the produce bins, the lady near the deli is handing out sausage samples, the baby in line ahead of us has a dirty diaper, an employee is mopping up a mess on the floor with bleach.

All the smells are smothering him and he can’t sort them all out. It's making him nauseated.

This would explain why he always complains of a stomach ache, needing to sit down and rest, and needing to use the bathroom when we are almost done with our shopping. 

Now, consider that all these things that he is seeing, hearing, and smelling are happening at once.

No wonder he hates to go to the store and acts out the way he does when he is there!  Who wouldn't have a meltdown under so much overpowering stimuli?  Remember, It's painful.  It can be excruciating.

Can you even begin to imagine what it's like?

Here is a short video that will allow you to do just that! 

The ordinary sights, sounds, and smells of everyday that you and I may not even notice can be downright painful for a child with Asperger's/Autism. The very environment in which they have to live often seems hostile.

Thing 2 may appear to be misbehaving but he is really just trying to defend himself against all the things that are bombarding his senses and causing him pain and making him feel ill.

I have my answer.  Can he help it?  No.  He cannot help how a simple trip to the grocery store makes him feel.  Can I logically expect him to never go to a grocery store for the rest of his life?  No.  I cannot.  There are going to be times in his life when he will simply have to face situations that make him uncomfortable.  So, what to do?

I have to work with him, find ways to help him cope, and to make the experience as stress-free as possible.  Most of all I have to be sure he knows that I understand what it is like for him... and that I do not think he is being mean, naughty, or bad.   

He is not misbehaving, he is in pain.

I know he can't help it... I just have to learn how I can help him.  Like all spectrum parents, I have much to learn, but I think I am off to a good start.

I already know the top five things that I need to help Thing 2.
1.  Knowledge.
2.  Patience. 
3.  Love.
4.  Support
5.  Faith.

Knowledge:  I am working on, daily. I research, read, and ask questions. 

Patience:  I am trying my best to acquire more of, daily.  This one can be hard at times.

Love:   I have in abundance, and I have a little more, daily.  This one is easy.

Support:  I am working with really good doctors and therapists. I have a very loving, supportive, 
family, and friends.  I am thankful for them, daily.

Faith:  I have faith that while some challenges lie ahead there will also be many beautiful blessings. My faith is strong, and I try to keep it that way, daily.

Yes, daily.  It's a daily process.  One day at a time.

"Nothing can overcome the blessing of God on our lives even though he permits us to face battles along the way. Even the hardships and conflicts we endure are part of his plan to bless us."
                                                                                                                                         -Jim Cymbala

So, what can you do, innocent bystander to the impending meltdown? 


   1)  Accept
            2)  Understand
       3)  Educate 
4)  Love

Let's "light it up" more than blue! 

I want to light up every color of the rainbow that is Autism Spectrum Disorders! 

Let's do more than be "aware" of Autism this April. 

Throughout the month of April, I'll be Authoring Awareness in order to promote acceptance, understanding, and love. 

Won't you join me and share this with others?


Other Authoring Awareness Posts:

1:  Authoring Awareness: April & Autism

Coming up next:  

Why Autism Speaks isn't Speaking for those with Autism, and why we should all light it up more than blue this April.

Wednesday, April 2, 2014

Authoring Awareness: April & Autism

This is my "official author blog" and as such I try to keep the posts here about all my fun (and not so fun) adventures in writing the next big thing.  But, outside of The Realm, I'm so much more than a writer.

I'm a mother.  

I'm a mother of a child on the Autism spectrum. 

So, I'm going to take advantage of April being "our" month to do a series on life on the spectrum.  I hope you'll find it educational, inspirational, and enlightening.  After all, what good is any author if he/she cannot write from the heart about all things they are passionate about?

By now, many people are aware that April is "Autism Awareness Month" and even those who aren't directly affected by Autism are into "Lighting It Up Blue" for the month of April.  That's great!  Awareness is a good thing!  But... is it enough?  Once you are aware of something, what do you do with that awareness?  Do you share the "awareness" with others?  Do you take action?  What's next?

While it's fine to be aware of something, it's not really an effective means of changing anything.
 I can be aware that it's raining.  I can then choose to tell others, "Hey, did you know it's raining?".  I can grab an umbrella and go out for a stroll in the rain... or skip the umbrella and go out there and get wet.  But can I stop the rain?  No.  I'm awesome, but I'm not that awesome.  The only thing I can do is learn all I can about where rain comes from and why.  Then I can accept that it is raining, and understand that rain is a necessary part of life.  It helps things grow... it helps life thrive.  I can do so much more than be aware.  I can learn,  I can accept, I can understand, and I can love the rain... even if it sometimes comes with a storm. 

So, as the parent of a child on the spectrum, I'm not going to try to make you "aware" of Autism this month.  I'm not even going to "light it up blue".  I'm going to bring more than awareness and hope that lighting up every shade of Autism Spectrum Disorders will help others accept and understand it.

Let's light up all the colors of the Autism Spectrum so that we can tell people that we are not only aware of Autism but we understand it enough to accept those on the spectrum and love them for who they are!

Let's look at the Rainbow that is Autism Spectrum Disorder:

Did you get all that?  Can you imagine having even one of these challenges? What about three?  Five?  All of them?  That's right, children and adults on the spectrum can have one, more than one, or all of the above disorders!  That's life on the spectrum.  You know how you dump a handful of Skittles from the bag and wait to see what flavor combination you get?  It's kind of like that.  You might have a child that has ADHD, Anxiety, and is Gifted.  The next year you might find your child has dipped his hand back into the bag of Skittles and pulled out a seizure disorder or depression to add to his taste of the rainbow.  You never know what you might get.  Every year that passes on the spectrum is like tipping the bag of Skittles and getting a new and different combination.

Look Mom! I'm a Cyborg!
(Overnight video EEG's to rule out Epilepsy)
My son has been diagnosed twice.  The first time when he was six years old.  At that time, he was diagnosed as "High Functioning Asperger's Syndrome with General Anxiety Disorder, ADHD, Sensory Processing Disorder, and Insomnia."  When he was ten it became clear that his rainbow had shifted when he began have a seizure type spell that would leave him dazed and confused.  It was back to the doctors/specialists for yet another review of his condition. 
They never really figured out what these "spells" were or why they were happening.
In the end they changed his diagnosis to "Low Functioning Autism".  His anxiety and ADHD were so extreme by this point that they thought his brain might be compensating to the overwhelming stimuli of the world around him by deciding to "shut down" whenever life became too "much" for his sensitive nature.  Dietary changes and new medications and supplements have helped.  His new "spells" caused him to lose a lot of his former subject knowledge. He forgot how to spell his name.  He back-slid from an 8th grade level math to a 1st grade level math.  We have a lot of relearning to do.  We might even need to repeat a grade of school.  Silver lining?  His reading went up from struggling with 2nd grade level to excelling at 8th grade level.  How?  No one knows!  Even the doctors are totally perplexed.  There's no explanation for it. 

That's life on the spectrum.  

Sometimes, there just aren't any answers.  
That infamous "puzzle piece" that has come to represent Autism?  It's under some fire lately.  Many think it's not appropriate to compare our ASD kids to a puzzle.  I can agree with that, actually.  My child is not a puzzle, he is a gift.  However, the puzzle piece is spot on in terms of the spectrum itself.

Life on the spectrum is often a puzzle.


Sensory Processing Disorder = Noise Reduction Headphones
Hey!  They go great with every outfit!

Coming up next:

Have you ever seen a kid totally losing it
in Walmart?

I'll introduce you to the mystery behind the Great Walmart Meltdown and explain what life on the spectrum is like for kids who suffer from sensory processing disorders.