Archive for the ‘SPD’ Category


There’s a meme going around with an ancient quote from a sixth century philosopher, Lao Tzu, so-called father of Taoism. It reads:

If you are depressed, you live in the past.
If you are anxious, you live in the future.
If you are at peace, you are living in the present.

I know this is meant to soothe or be, you know, wise. I know that some therapists use a similar approach with their patients.

The more I see this float around Facebook and other social media… the more I see this in my support groups… especially the ones where so many of us have anxiety and depression in addition to our physical disabilities… the more this quote makes me realize how much it’s adding to the stigma and misinformation about Depression and Anxiety Disorders.

It insinuates heavily that we can choose our state of peacefulness, anxiety, or depression. Granted this quote is from the sixth century when they didn’t have the knowledge we have now about neurological differences and disorders like Major Depressive Disorders, Anxiety Disorders, Bipolar Disorders, Schizophrenia, Traumatic Brain Injuries, Intellectual Disabilities, Emotional Disorders, Mental Health Disorders, Behavioral Disorders, and more neurodiversity. Even if Depression and Anxiety aren’t the primary diagnoses, they can still be a secondary diagnosis and still be significant. There’s a biological basis for these concerns.

In other words, you’re born with it. You don’t choose it.

Depression has nothing to do with living in the past. Anxiety has little to do with living in the future. And let me tell you, living in the present is not usually a picnic but is in fact very often what causes anxiety and depression if we’re talking about situational depression and anxiety.

If we’re talking about situational depression and anxiety, talk therapy and using tools learned in therapy and coping mechanisms learned by experience in life can help ease the symptoms. Talking down, getting sunlight, exercise, proper diet, and all of those mood boosting things that we endorse (I do, really I endorse them because they’re helpful) are wonderful for situational depression.

If we’re talking about Major Depressive Disorder and Generalized Anxiety, if we’re talking about other neurologically based depressive disorders and anxieties tied to them, there’s no control involved. There’s no talking it through. It’s not rational. Talk therapy may help, medical treatment may help more.

But it’s not a choice. And this meme… this meme of this quote is damaging to those of us who aren’t just going through Seasonal Affective Disorder or are sad because our boyfriend is cheating. We can’t just buck up and get over it because it’s not situational. It’s biological and we can’t turn it off. We have to let it cycle. A situation or mood may trigger it, but there’s usually a lead up with signs pointing to it. We can’t always see them or recognize them.

Please, if you see this meme with this quote, pretty lettering and all, don’t share it.

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WARNING: To teen or adult autistic individuals, I’d like to take care in warning you that this blog entry could be triggering to you.  I personally will not discuss ABA in detail because due to how our doctor referred us and who we were referred to, we chose not to pursue ABA therapies for our daughter.  That means I can’t speak to this from personal experience from a parenting standpoint nor on behalf of my daughter.  However, the link titled “ABA” will be discussing ABA therapies in some detail, so if you feel it will trigger trauma for you, please consider refraining from clicking the “ABA – Unstrange Mind link.

This link I’m about to share from Unstrange Mind by Sparrow Rose is probably one of the best and most comprehensive laymen’s explanations of why ABA therapy in its original intended form is, at best, misguided and at worst terribly abusive.  It also explains the difference between “different types of ABA” considering that in order to get an appropriately non-abusive therapy covered it must be classified as ABA for insurance purposes.

Most importantly, it explains to every loving, caring parent who takes their child to ABA and might fear that they’re being accused of abusing their child by allowing abuse through ABA what to look for in the therapist and the therapy their child is attending.  It talks about intent in bringing their children to ABA.

“ABA” | Unstrange Mind (click here).

This blog entry is a gift and ought to be read by every self-proclaimed Autism specialist, advocate, pediatrician, ABA therapist, teacher, special educator, parent, Autism advocacy agency, and anyone else whose lives might ever be touched by Autism or ABA.

This is so important.  When adult autistics speak, please listen.

 

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Keep Calm And Vaccinate

Keep Calm And Vaccinate

If you haven’t read this article yet, please please please read it.  Please pass it along.  Share it on Facebook.  Get this information out there.  If you have a friend who is a Vaccine Denier print this article out and give it to them.  If you’re a Vaccine Denier, please give this a chance and read it with an open mind.  Read it as if you have a child with Autism.

This article, right here in red. Click it.

It Took Studying 25,782,500 Kids To Begin To Undo The Damage Caused By 1 Doctor.

Read it as if your child has the Measles and you didn’t find out in time what it was, because doctors of our time don’t know the symptoms to look for in real life since the great majority don’t know what they’d actually be looking at.  They would be thinking it’s just a spotty rash, maybe sun spots from overheating.  Your child would be at risk for blindness and other serious complications.

Yes, Measles is serious.  It’s not a “mild childhood disease.”  This is a misguided belief, and needs to be reconsidered.  Measles isn’t mild.  Measles is more than just uncomfortable.  Measles kills children.  It causes severe complications in pregnancies that can cause serious lasting problems for the babies.

/But I can show you what I’m talking about.What I wonder is that in spite of knowing the very real dangers of the disease, which are far, far greater than the false belief that it causes or contributes to Autism Spectrum Disorder, is why people still insist that it’s “mild” in its symptoms.  People who let their children go to “measles parties” (and for that matter chicken pox parties) have children that didn’t and don’t appreciate contracting the disease their parent forced upon them.   Before the chicken pox vaccine, for instance, I have a relative who contracted it (naturally) and ended up with a pock on her eye.  She has a small hole in her eye because of it.  As I recall when she had the chicken pox, it was beyond terrible.  I remember having the chicken pox.  I felt like I was dying.  I had pocks in my throat, and I have scarring all over me including my face.

I’ve spoken with people who had the measles.  It was more than uncomfortable, and it wasn’t “mild” but nearly every instance had each of their parents making urgent calls to the pediatricians and trips to the ER.  Anecdotal evidence, I know, meaning nothing to those who wish to make a point that they “must” be an exception, but research backs it up.  Science, even.  Right now I’m talking children.  It’s no picnic for adults either.

But I can show you what I’m talking about.

From the World Health Organization:

Who is at risk?

Unvaccinated young children are at highest risk of measles and its complications, including death. Unvaccinated pregnant women are also at risk.
Any non-immune person (who has not been vaccinated or was vaccinated but did not develop immunity) can become infected.

People die of complications from Measles.  Those most susceptible aren’t just children 5 and under, but people OVER 20 years old.  Yes, healthy adults die from the Measles and complications from the Measles.  Many of the complications themselves don’t have treatments.  And what people don’t realize is that Measles can lead to babies and young children and elders having to suffer with multiple diseases in addition to the Measles, at the same time as the Measles, with long lasting consequences due to negligence.  Complications include:

  • Acute Encephalitis
  • Subacute Sclerosing Pan Encephalitis (SSPE)
  • Viral Pneumonia (Hecht’s GC) or Bronchial Pneumonia
  • Severe Diarrhea
  • Dehydration
  • Death
  • Premature birth
  • Miscarriage
  • Severe Conjunctivitis/Eye Infection that can result in Blindness – indicated by pus draining from the eyes
  • Mouth ulcers
  • High Fever
  • Scarring rashes
  • Severe Ear Infections that can result in Deafness
  • Bronchopneumonia
  • Croup aka Pertussis aka Whooping Cough which is a full on killer… and should have its own vaccine: this can cause its own complications, such as lifelong asthma and other lung problems; vomiting, choking, breathing problems, damage to vocal cords would be immediate complications that could have lasting effects
  • I just found this little gem:  http://www.docstoc.com/docs/69029290/Measles-Rubeola-(PowerPoint)

From the World Health Organization:

Key facts

Measles is one of the leading causes of death among young children even though a safe and cost-effective vaccine is available.
In 2012, there were 122,000 measles deaths globally – about 330 deaths every day or 14 deaths every hour.
Measles vaccination resulted in a 78% drop in measles deaths between 2000 and 2012 worldwide.
In 2012, about 84% of the world’s children received one dose of measles vaccine by their first birthday through routine health services – up from 72% in 2000.
Since 2000, more than 1 billion children in high risk countries were vaccinated against the disease through mass vaccination campaigns ― about 145 million of them in 2012.

 

Here’s the kicker.  There is no specific treatment that exists for the measles virus.  Antibiotics do nothing.  Antivirals do nothing.  That means you can’t just go to your doctor to get an antiviral or antibiotic for it once you contract it, period full stop.  Once your child gets it, they have it and have to suffer through it and you have to be responsible for the fact that you didn’t get your previously healthy child the vaccine that could have helped prevent it or at least reduced the severity of it.  And you’ve risked other children and people who are immune-compromised that are unable to get vaccinated for legitimate medical reasons, or because they’re too young to get it.  Please remember I’m not talking about babies, children, and adult that are not medically able to be vaccinated because they’re too young or they have an allergy to the ingredients (like egg whites) or some other medical reason.  I’m talking about people that are able to get the vaccine and choose not to because of paranoia and the lingering thought of “What if Wakefield was right? That poor man, people thinking he hoaxed the world, he was on to something!” No, no he wasn’t.  He was scum.  I’ve written about him too.

The best thing you can do for the most communicable diseases that can actually kill your children at worst and cause severe complications like blindness and preventable disabilities, such as Measles, Chicken Pox, Mumps, Rubella, Polio, at best is prevention.  Vaccination.

You can not prevent measles or other communicable diseases with diet, products from self-proclaimed health product companies, vitamin supplements, exercise, prayer, or wishful thinking.

The “poisons” you think that make up vaccines? Trace amounts.  Look it up.  I’ve even explained what it means before.  Do you know what trace amount means? It means so minute, so minuscule, such tiny, tiny, tiny amounts that it can’t even be measured and that even if you took that trace amount and multiplied it by a million you still couldn’t measure it and it wouldn’t be toxic.

Here’s a thought.

We avoid arsenic because it’s a poison, right? Remember the arsenic-in-apple-juice scare a couple of years back that’s coming around again? Well… arsenic is present in the apple itself.  That’s just nature.  You could eat a hundred apples in a week (I wouldn’t recommend it for your intestines sake) and it wouldn’t give you enough arsenic to kill you because it’s trace amounts.

Potatoes.  We all love potatoes, tomatoes, hot peppers, eggplants, paprika, and cayenne peppers.  We put those in many, many recipes around the globe, don’t we.  But we wouldn’t dream of eating Belladonna, or Nightshade.  Belladonna is a deadly poison.  And yet potatoes, tomatoes, hot peppers, eggplants, paprika, and cayenne peppers all have alkaloids in them, the same substance that affects nerve and joint function.  They don’t affect us because they don’t have nearly the amount of the toxin in them as Belladonna does, and we would have to eat large amounts at one time in order to have an adverse reaction unless we have a sensitivity or allergy in particular to the fruit or vegetable or to nightshades in general.

I’d like to introduce you to Dihydrogen Monoxide:

Dihydrogen monoxide:

Despite the danger, dihydrogen monoxide is often used:

*as an industrial solvent and coolant.
*in nuclear power plants.
*in the production of Styrofoam.
*as a fire retardant.
*in many forms of cruel animal research.
*in the distribution of pesticides. Even after washing, produce remains contaminated by this chemical.
*as an additive in certain “junk-foods” and other food products.

 

It’s water, people.  Simple water.

Some chemicals are actually good for you.  Aloe from aloe plants.  Lemon juice.  Orange juice.  We hear the word chemical and we panic.  It must mean that scientists mixed some naturally derived ingredients and made a chemical or that scientists figured out how to synthesize ingredients to create a medicine… a chemical.  And we all know that scientists and BIG PHARMA have it out for us.  They’re just OUT FOR THE MONEY.  They want to PUMP US FULL OF CHEMICALS FOR THE MONEY.  They couldn’t possibly want to, you know, keep children from dying from terrible diseases or cure people from stuff.

We’ve been trained to think that chemicals are bad by what I like to call the Big “Natural” Movement.  “Chemicals” must be evil.  This is when I like to remind people that blood is a chemical.  Beer.  Wine.   Marijuana grown in your backyard.  Tears.  Those are all chemicals.  Bile is a poison.  Poop is a poison.   All natural, yet.  Words are not always what they seem when there’s an agenda and talking points and rhetoric is involved.  So the fear based thinking regarding vaccines because of the CHEMICALS is thanks to the “All Natural” and “Clean Living” movements.  They’re manipulations in order to get you to buy what they want you to buy… but in order to do that they have to also demonize what they want you think of as the opposite of what they’re selling.

We’re told to get our vitamins, and certain compounds, to help make sure our health is at its peak.  Certain vitamins and minerals are illness fighters, cancer busters, immunity boosters.  The best way to get those healthful vitamins and minerals is through our natural diets in fruits, veggies, grains, and for those who eat meat, eggs, milk, for us to get out in the sunshine, etc.  However, so-called health companies have their agenda.  Money.  “Let’s sell you products that our very own scientists have figured out have The Very Best Combination of The Very Best Nutrients Ever and if you buy these products regardless of their cost you might get sick less often so that your disorder or disease no longer even exists AND you won’t even have to take medication any more”.

Even though the claims can never be backed by the FDA because these products are not medicinal health products.  They very well may help you, but they’re not health products.  Not even vitamins can make claims other than what strict FDA regulations say they can.  And what they never tell you is that they (vitamins AND self-proclaimed health food and health product companies) can still interact with necessary meds, the ones you don’t get to stop taking.  They mislead people into thinking they don’t need something vital and can end up killing someone.  It’s not because doctors aren’t involved… it’s because people are lazy and don’t open up communications.  They would rather take something that can’t ever be proven with facts and statistics scientifically for certain from a company that calls itself a health company than trust their own doctors.  People don’t even trust Registered Dietitians to help them because they’re part of the medical field.  They’d rather trust nutritionists and people without certification or backgrounds in scientific training.

Jarred vitamins are great as supplements, but no matter what the label tells you it’s not “natural” if it’s in pill form.  They’re a modern miracle, sure.  Difficult to really absorb, as they’re not very soluble.  Again though… people don’t think to tell their doctors what they’re taking or why they think they’re taking it. People think that they’re their own doctors, that they have to be, due to paranoia.  And the Big Natural Movement is fostering that feeling, that belief, that fear of doctors, in order to cash in.

The only way real way to get the best nutrition you can is with a diet full of fresh foods that can spoil, not sitting on your shelf in a wrapper.   Something wrapped or bottled and slapped with a label that says “diet” or “natural” or “all natural” is actually not health food.  It’s not prevention or medicine to take supplements or have a great diet.  Because again:  You can not prevent measles or other communicable diseases with diet, products from self-proclaimed health product companies, vitamin supplements, exercise, prayer, or wishful thinking.

We survive longer and are healthier than a century ago, than 75 years ago, because we have medicines.  Because we have vaccines.  Babies, children, adults are living longer because of the vaccines.  Booster shots are available for those who ask for them.  There are ways to get them inexpensively.

We survive longer because we have vitamin supplements and better variety of fresh foods available for everyone.  We survive longer because we have better knowledge of germs and cleanliness, sewer systems, food preparation safety.  We have more doctors, who have better medical equipment and more knowledge at their disposal than ever before.  We live longer because of all of these things put together.  We have the power to eradicate terrible diseases like Measles, Chicken Pox (varicella), Polio, Rubella.

So that said.  Let’s move on.  I spent enough time on that thought.

People think that every ingredient that’s in vaccines is poison because it’s a “chemical” at this point, including the vaccine itself ie. the dead virus or germ that is being vaccinated against.  People don’t understand how vaccines actually work, how the body works.  How things weren’t perfect with our health 50 years ago, 75 years ago, 100+ years ago… thousands of years ago.  People stopped eating bark off of trees for a reason.

People died from urinary tract infections, for crying out loud.  People still die from pneumonia.  And children ARE dying from Measles.  And people afraid to get the vaccines but then are afraid to let even other family members who have been vaccinated around their children for fear of their child contracting these terrible diseases? That’s your better sense taking over.  Listen to it.

This is on a good-to-know-basis for those still worried about that dangerous, dangerous Thimerosal that isn’t actually Mercury but people think is pure Mercury (I’ve blogged about this before too in more detail):  Thimerosal  is no longer used in childrens’ shots except in some types of flu shots.  You can ask for a flu shot that doesn’t have thimerosal in it.  Let the doctors know ahead of time so that they can order it for you.

If you care for my opinion on Autism outside of this particular post, just put Autism in my search bar or check recent posts.

I’ve exhausted myself with this post.  I’m sure I’ve offended some people.  It’s ok.  Facts sometimes do that.

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Today’s post is inspired by this blog entry on another blog I follow:  i like being autistic | a diary of a mom.  I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.

A couple of weeks ago, we were out at a barbeque.  It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade.  All of my daughters were enjoying their day playing with their friends and having fun.  Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.

Then the Big Question that I dread more than any other, and am inevitably asked.

“Do you ever wish she didn’t have Autism?”

I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her.  The questions came about along the lines of,

“What about the difficult moments”

because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days.  When they see her, she’s on her best behavior most of the time.  She’s “on.”  She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her.  She’s never much liked anyone even seeing her cry.

I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.

Still, it’s exhausting to talk about.  I also realize that it contributes to the negative down-talk about Autism.  It perpetuates the belief that Autism is more negative than positive.  It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one.  I’ve blogged about her, and still do, about the bad days.  It’s partly what the blog is for.  It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.

“I would not change her, even for the most difficult moments.  I won’t lie, it’s hard.  But she’s wonderful.  I couldn’t change her.  I couldn’t take away such an important part of her.”

I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her.  We’re working hard to understand her.  We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.

We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it.  Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with.  Her personal obstacles and difficulties are things we help her with every step of the way.

Some days are great, some are bad.  Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions.  I assume intellect and willingness to learn.  I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends.  She’s no different that way. But suddenly I could tell I was losing this person I was talking to.

I was “teaching” too much.  Sometimes I lecture without meaning it to come out that way.

I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is.  I knew I was taking a risk in asking her at all, at having her response be to tell me,

“SHUT UP! MAY YOU NOT SAY THAT TO ME?!!??”

I called Sweet Girl over to us and got her engaged.  I asked her the question I’ve asked before:

“Hi Honey.  I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)

“NO! You may not have my Autism! It is MINE! I need it!”

“Okay! Just checking!”

We had a smile over her response, I gave her a hug, and she skipped away.  I counted myself lucky that she didn’t scream at me for asking a clearly stupid question.  She would have been justified.  I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could.  My dear 11 year old self-advocate.

I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos.  She’ll pore through those photos for hours.  Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little.  But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images.  She touches them and caresses them, smiling.  Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,

“I saved them and shared them because you’re special to me, and that means your Autism is special to me too.  It’s part of you and I love every single bit of you.”

::nodding:: waiting for more:: “Yes, that is good.”

“I’m happy you think so, honey.  I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”

::nodding:: wanting more::  “Yes, mmm hmmm.”

“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”

“Yes, I have my Autism.  Do not take my Autism.  No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy.  You saved these for ME.”  ::soft smile::

And there you go.

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Tone It Down, Don't Feed the Fear

Please Do Not Feed The Fears

I’ve been meaning to post this one for a while, but you know how life gets in the way of that “publish” button.  So here it is… pushing “publish.”

We’ve come a long way, Baby.  A long, long way.  Supposedly, in 1975 only 1 in 5,000 children had Autism Spectrum Disorder.  By 1985 that number had doubled to 1 in 2,500.  No one noticed.  No one really knew what Autism Spectrum Disorder was quite yet, unless you count Rain Man (1988?) with Dustin Hoffman’s character, who the movie claimed was an autistic savant.  Oh, Rain Man.  That movie is really a bane to ASD since the Rain Man‘s character was based on Kim Peek who had Megasavant Syndrome, Macrochephaly, and FG Syndrome but did NOT have Autism Spectrum Disorder.  The movie tried to put a positive view on ASD and bring attention to the disorder, trying to help dispel the stigma of ASD and that part is good… but it also gave the impression that savantism is typical for autists and it’s just… well… not.  Dustin Hoffman’s portrayal of autism was simply inaccurate, especially when taking into account that the character was based on a real man.  Then when people who know very little about autism except what they think they’ve learned from the movie Rain Man find out that my Sweet Girl is autistic they’re surprised because she’s “not like Rain Man.”  I can’t tell you how much restraint it takes to keep from growling and snarling,

“BUT THE REAL RAIN MAN WASN’T AUTISTIC! GOOGLE KIM PEEK!”

Ahem.  Sorry, I do that sometimes.  I didn’t mean to wander.

When my Sweet Girl was first diagnosed, the Autism Numbers were “1 in 166 children are on the Autism Spectrum.”  That was 2004-ish.  In 2007 the numbers appeared to shrink to 1/150 and people started to feel uneasy.  In 2009 the numbers appeared to shrink again to 1/110 and panic was clearly settling in and vaccine denialism started to become a real epidemic.  Then in 2012 the CDC released new numbers… 1/88 and people lost their fucking minds.  Jenny McCarthy became someone to revere and even though the completely-discredited-by-multiple-actual-real-unaffiliated-with-pharma-scientists-who-also-proved-during-investigations-that-he-hoaxed-results-and-original-faked-study-and-article-in-The-Lancet-was-retracted Andrew Wakefield lost his license as a doctor and is not allowed to practice medicine, he’s still be touted as a reliable source regarding vaccinations and Autism Spectrum Disorder.

The CDC recently put out new numbers that one in 68 children are estimated to be on the Autism Spectrum.  Every time this number changes, people panic.  People want to find the CAUSE, the BLAME, the REASON for this TRAGIC EPIDEMIC!!!!!!!!  Because of course we have to figure this out and PUT A STOP TO IT so that NO ONE ELSE HAS TO SUFFER!!!!  We have to SAVE THE CHILDREN!!!!  WE NEED A CURE!!!!! WE NEED TO FIGHT! AUTISM!

Right? I mean… think about this.

Can you tell me what’s going on that paragraph? What do those words imply? Can you figure out what’s wrong with the language in there that I see every single day from people who are suckered into vaccination denialism and Autism Speaks Rhetoric Disorder?  The fatalistic language.  Can you imagine being a child of a parent that’s using that language? There are many adults that have or had parents that used all of that fatalistic and negative language that make it sound as if Autism is a disease that needs to be stamped out, that Autism is damage and therefore YOU are damaged?  Can you imagine growing up knowing that’s how your parents feel? It’s common language coming from the parental community.  Who is suffering? The autistic children? The autistic adults? Who asked the autists if they were suffering? Oh wait… maybe it’s the parents who are suffering and shouldn’t be because they didn’t ask to be parents of autistic children.  Why does there have to be someone to blame? What’s the tragedy? What needs to be cured when Autism isn’t a disease? Why are we “fighting” Autism? This isn’t a war and we aren’t fighting a thing… we would be fighting PEOPLE.  Autism isn’t separate from our children or teens or adults.  They ARE Autistic.  Autism isn’t a label.  It actually is a state of being, a state of the brain, a state of functioning that can’t be turned off.

All of that language is affirming only to parents who want to continue feeling victimized… but don’t realize that Autism hasn’t victimized them nor has it victimized their children.  Autism Speaks did that to them.

We have to take a hard look at the Autism Speak induced language that is used.  Even their very own informationals are anxiety-inducing. This is THEIR image… I didn’t futz around with this:

COST TO SOCIETY via Autism Speaks

“The Cost Of Autism.”  Every letter in that image is capitalized.  They really want to get their point across in this Autism Speaks informational image that every single autistic individual is a costly endeavor not only for their poor, undeserving-of-being-afflicted-with-an-autistic-child parents, a monetary burden, but they’re costly and a burden to society.  The COST OF AUTISM IS A COST TO SOCIETY!  Cost = Burden.  Hell they even put a dollar value on how much a burden our autistic children are.  It can’t be much more obvious than that.  It’s obvious with every single informational that Autism Speaks puts out.  It’s obvious with what they do with their money and who they allow on their boards and who they allow to make their decisions about what “should” happen to autists.  They are burdens that need to be lifted, and to do that we need to “research” to find out what caused the reason for them being a burden so that we can cure the reason.  Except there isn’t a cure.  It’s not a disease.

I have an image that clearly depicts some facts about Autism Speaks that are disconcerting, and I apologize for the size but any smaller and you won’t be able to read it.

 

Please Do Not Donate To Autism Speaks

Know The Facts About Autism Speaks: Please Don’t Donate

 

Something else started to happen over the past few years since the “OMG! EPIDEMIC” numbers came out.  Backlash from adult autists.  Because you know, Autism not being an ILLNESS or a SICKNESS can’t be an epidemic.  That’s elementary.  Autistic adults have been lifting their voices in different ways (thank you internet!).  Autistic adults are writing books, articles, blogs, starting Facebook pages, doing research, contributing to society in a more public way than before.  Sharing FACTS about what it’s like to be autistic.  What it’s like to have the language that attempts to separate the ASD from the individual when in fact, trying to do that is dehumanizing.  Advice for parents of autistic children.  The best advice I ever heard in how to raise my daughter has been to read blogs and articles and books written by autists.

Do you know that I’ve seen online discussions between parents of autists, and adult autists who have told them straight out that the language they’re using, Autism Speaks induced language, makes them feel dehumanized and minimized and that it offends them and that it hurt them as children when they couldn’t express it, that those parents tell them “That’s not true because my child knows I love him/her.  You are not my child.  You’re wrong about the language.  The language I’m using is correct and I’ll keep using it until my child is able to tell me which language he/she prefers.”  They insist that Autism Speaks is wonderfully supportive and brings positive attention and awareness to Autism.

Except it doesn’t.  The attention it brings is negative, and none of the information is from the autistic viewpoint.  It fosters the initial stressful, anxious, mourning reaction that we parents feel when we hear the diagnosis that our child has ASD and related diagnoses.  Those are instinctive feelings when we feel guilt and worry because we know that not only are we as parents in for a rocky road that we weren’t prepared for as parents, but our children aren’t in for as smooth of a path as we imagined before they were born or conceived.  We mourn the loss of the life we imagined, the perfect life that wasn’t going to be perfect anyway, but instead of adjusting the same way other parents that have children with neurological and/or physical disorders and/or genetic disorders we get stuck in an emotional quagmire because when we look for support groups and resources just like every other disorder out there, we see Autism Speaks in our search results first.  They’re highly rated and hey, TV networks promote them.  Trusted magazines and specialists, doctors, local stores, national stores, national and worldwide companies promote them and donate to them.  They even offer special products during Autism month so that a portion of those sales go specifically to Autism Speaks! As a parent just starting out trying to figure out the new normal, it can take a while to figure out that they’re really not legit.  They’re really a parental support group, promoting the sorry-for-yourself parental support by endorsing the Autism Is A Tragedy That We Need To Cure And Prevent mode of thinking.

They don’t promote acceptance.  Acceptance is what is needed, desperately.  It’s needed for the sake of holding families together and for the sake of the parents’ sanity and for the sake of the autistic individual most of all.  We don’t want any more generations of autists growing up thinking that they’re Less Than.  As Temple Grandin wrote, Different Not Less.  That means EQUAL.  It doesn’t mean that ASD isn’t still a disorder.  Someone that has Down’s Syndrome or Bipolar Disorder or Diabetes I or Dementia or Fibromyalgia or is Deaf is Different Not Less, they are EQUAL, while still maintaining that their diagnoses are very real and shouldn’t be minimized.  Acceptance is key.  And Autism Speaks is not accepting of Autism at all… because the implication of their rhetoric means that the research they’re supposedly doing and funding would be to eradicate Autism.  Detect Autism before babies are born is one goal.  Can you imagine the implications of that?

No one can live in that constant state of anxiety and fear.  I’m not talking about we parents.

I don’t have a great segue into this next bit, so here we go.

What does this new number released from the CDC actually mean? What does 1/68 mean?  This is a great blog that explains it but the main thing I want you to get out of this blog entry at the Thinking Person’s Guide to Autism is “Don’t panic… Tone it down.”    So click on this here:

Thinking Person’s Guide to Autism: Keep Calm and Think Critically: The CDC’s 1 in 68 Autism Numbers.

 

There’s another problem.  The CDC sucks donkey balls not only at obtaining accurate ASD numbers across the country (honestly the sampling referred to in the article is ridiculous) for children, but it’s nearly non-existent for adult autists.  That means that it appears as if with the currents statistics that there’s an increase in ASD rates and that there are far more children with ASD right now in the U.S. than there are adults with ASD.  The reason this is important is that if they did that, they would likely see that the rates of ASD have been stable and are equal between children and adults.

Want to see something really cool? I mean really, really cool.  The UK did exactly that.  When they say 700,000 people ie. 1/100 of the population they mean children and adults.  This is a really Big Deal.

 

How many people in the UK have autism? Click here

Around 700,000 people may have autism, or more than 1 in 100 in the population.

There is no register or exact count kept. Any information about the possible number of people with autism in the community must be based on epidemiological surveys (ie studies of distinct and identifiable populations).

The latest prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. This means that over 695,000 people in the UK may have autism, an estimate derived from the 1.1% prevalence rate applied to the 2011 UK census figures.

The prevalence rate is based on two relatively recent studies, one of children and the other of adults. The prevalence study of children, (Baird G. et al., 2006) looked at a population in the South Thames area. The study of adults was published in two parts, Brugha et al (2009), and The NHS Information Centre, Community and Mental Health Team, Brugha et al (2012). This is the only known prevalence study to have been done of an adult population.

(click on the link in the subject line of the article to see much more from the article)

 

I’m trying to bring all of these thoughts into one cohesive “Ah Ha” for anyone reading this.  I know I’m not reading as being very linear today.  Blame the Fibro Fog.  All right.  Here’s what all of this means to me in my heart:

My Sweet Girl is 9 1/2 years old now.  Since she was diagnosed so many years ago in preschool, she has come a long way in so many areas and I’m so very proud of her.  Early on I became uncomfortable with Autism Speaks and couldn’t put my finger on it.  I prayed on it.  I think  I blogged about it. It was a huge turning point for me because that’s when it stopped being about me and more about her.  I started to ignore Autism Speaks and their language, and I sought out blogs and support groups run by autists where I learned about their dislike of Autism Speaks and certain other groups.  I continued my education about Autism and the related issues that my Sweet Girl has, and let her know that I don’t want her to change.  I want to help her learn to cope and get an education so that she can learn how to get around in a world that wasn’t made with people like her in mind.  We use positive language regarding ASD, and we don’t keep it a secret from her.  She has a great IEP team at school, and she attends the meetings now.  If she chooses not to attend, I bring a list with her concerns and wishes on them and her team takes it all seriously.  They’ve actually made positive changes due to what she wants and it’s helped her.

Since making these wide sweeping changes in how I think, it’s changed how I advocate and treat her.  She’s better able to self-advocate.  She’s proud of her ASD and values it.  This isn’t to say that there aren’t incredibly difficult, downright miserable days. moments, hours, but the positive have been outweighing the negative.  We’ve both matured.  Her sisters are her advocates.  Her CLASSMATES are her advocates and while they know there’s something a little different about her, they don’t really know.  Her teacher told me recently that all of the girls and most of the boys (this is the first year boys are involved, eek!) are very protective of her and they all adore her.  They ALL notice if she’s not participating in social activities so they ALL encourage her and include her in everything.  If her feelings get hurt they all do their best to explain situations to her, and if she hurts someone’s feelings they explain to her why their feelings were hurt.  I’ve never seen that in 5th grade classrooms.  Her teacher has never seen this.  The children in this class are so genuine with her, I’ve seen it and it fills my heart.

The social stuff is still hard.  That’s ok.  The need for perfectionism is hard.  That’s ok.  The intense passion over certain subjects can be difficult.  That’s ok.  The meltdowns, the sensory processing issues, the eating issues, it’s all ok.  We’re working with it.  We’re teaching her and disciplining her, just in a slightly different (not less, but equal) way than other children.  I’m learning different approaches and language that might be useful when disciplining her and even how to approach her during the escalation of a meltdown (not a tantrum) and teaching her how to identify when she’s about to have one.  We’re teaching her that it’s ok to “not speak” or “not make eye contact.”  We’ve taught all of our girls that they have the right to refrain from giving permission to having anyone touch them… whether it’s a kiss on the forehead or a gentle hug or a touch on the cheek… with thanks to sensory processing disorder.  Who knew?  We’ve been able to find alternatives to an immediate hello, an immediate welcome hug or kiss, with a finger wiggle that says ‘Hello.’  Because you know, Autism or not, you still should be polite when it’s possible.  Reminders of manners still occur, but when she’s unable to say hello or be courteous to society standards or family standards I happily stand up for her without apology.  I know that she’ll come back later to say hello on her own terms in her own way.  Because I gave her that permission while still trying to teach her Society’s Way.

Since making these changes in how I think, my own stress about her ASD has reduced dramatically.  Do I still feel anxiety occasionally? Yes.  The biggest difference is that I don’t wish things were different for her or for me or our family.  I ACCEPT her Autism completely, even in the midst of the worst of her meltdowns.  As hard as those meltdowns are for me to get through with her; as scary as the meltdowns can be for her sisters; as disconcerting a they can be if they occur in public with people staring; I know that the meltdowns and the challenges and the difficulties are hardest for her to get through.  Sweet Girl is the one experiencing the sensory explosions, the emotional upsets, the takeover of her brain and body.  I see the panic that occurs when she realizes she can’t control it but wants to… and that’s the moment she accepts my help.  I let her experience what she needs to experience before that.  I let the fire burn what needs to burn before I enter that building.  I pick my moment.  I speak low, gently, and offer sensory input of her choice.  I offer a different location that’s quiet and unoccupied and safe.  I let her stim to her heart’s desire in her safe place if she needs it.  This isn’t easy.  I’m not always patient.  I’m not always good at this.  What gets me through enough to help is knowing that she’s not doing it on purpose, she’s not enjoying it, and those moments are the rare cost of the rest of her amazingness.  I don’t use the word amazing very often.  I don’t want it to lose meaning.

Since my own anxiety has reduced, so has hers.  She’s been more independent and is more willing to try doing new things.  I speak to her with respect and assume that she understands what I’m saying until she makes it clear that she doesn’t.  I ask her if she understands or needs me to “say it a different way.”  I respect her boundaries, although sometimes I forget.  She has a lot of rules, you know.  😉  She knows I try.  Instead of smothering her with hugs and kisses when I feel the urge, I tell her that I want to hug her and kiss her but won’t because I’m respecting her… and she smiles.  Sometimes she’ll tilt her head toward me so I can kiss the top of her hair where she won’t feel the kiss.  Sometimes she offers a spontaneous hug.  Sometimes… rarely… if I say to her, “I love you, sweet girl,” she says, “I love you” back.

Sometimes she can go from being Miss Grumpyface who’s ready to move out and find a new family after a meltdown to sitting with me for a snuggle and asking me to help her create a recipe for a new idea she has.

Positivity.  Positive advocacy.  Allowing her to self-advocate.  Being the parent she needs and wants.  ACCEPTING and loving who she is.  There’s no mourning over Autism in this house.

 

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There are several places I love to visit for support:

The Thinking Person’s Guide to Autism
Diary of a Mom
Autism Women’s Network
ThAutcast

I know I’m missing some, but those will get you started.

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It’s no secret that this is not a household that supports or will support Autism Speaks, monetarily nor in action.  I won’t get into why here but will save that for another post.  One of the “things” that belongs to Autism Speaks is Lighting It Up Blue.  Before I knew or checked out that it originated with Autism Speaks, we happily did it and encouraged it.  I even turned my Facebook images blue for not just a day but all of April.

I was bound and determined that I wouldn’t wear blue in order to Light It Up Blue today, which is of course World Autism Awareness and Acceptance Day.  Swore up and down it wasn’t going to happen.  I’ve been discussing it and explaining why on my Facebook.

Then last night happened.  My youngest daughter said,

“MOM! MOM! I heard you say tomorrow is World Autism Day! The school is doing this thing!”

Then my middle daughter, my sweet autist, immediately followed up by gushing with,

“Mommy you have to wear blue tomorrow! Everyone is wearing blue for ME!”

“Yes they are, honey.  Yes, they are.”

The two of them together were quite a pair, talking about how the school made announcements and the teachers were talking to their classrooms about Autism Spectrum Disorders and what a special day April 2nd is, and how special all of April is for people touched by Autism Disorders and autistic individuals.  As a WHOLE! SCHOOL! they were going to SHOW! SUPPORT! with the WHOLE! REST! OF! THE! WORLD! and it’s just really the biggest spirit day ever for my daughters.  After all, my daughter believes that this whole worldwide day and month is set aside just for her… and the school dressed all in blue today just for her.

When she asked me to wear blue to show my support for her special autism, how could I say no? How could I bum them out with the rhetoric of “why we don’t support Autism Speaks and their stuff?”  How could I say no when my girl thinks that blue was chosen specially because it’s her favorite color?

It’s simple.  I didn’t.  I wore blue after all.

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Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=NuIqSZjxBauA8M&tbnid=S6HgtM3YkTX2-M:&ved=0CAQQjhw&url=http%3A%2F%2Fhittingthewall.paulglover.net%2F20130509-fibromyalgia-awarness-day-2013-show-someone-in-pain-you-love-them%2F&ei=QSgwU-n5OcK0yAGF8oGwCA&bvm=bv.62922401,d.b2I&psig=AFQjCNEOFLYng877JZKQ1bt8jREYuBaWug&ust=1395751334502767

Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.

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