Posts Tagged ‘ASD’


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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Happy Friday [I forgot where I got this image, sorry... I just googled for Lemonade Happy Friday, although I know it's not lemonade ;-)  ]

Happy Friday [I forgot where I got this image, sorry… I just googled for “Lemonade Happy Friday” although I know it’s not lemonade ;-) ]

This morning, Sweet Girl had an apple for breakfast and while munching on that apple she sat on the couch with me and watched the Today Show with me… and she was just so happy.  Since she didn’t have to get up as the asscrack of dawn (aka 6:30) for extended school year bus, she got up at 7:30 with me.  Gracie had me all to herself and she took advantage of it, snuggled up next to me on the couch.

She talked my ear off.  Yes, yes she did.  Because there was no one except Daisy the cat to listen in and interrupt and tell her she was wrong, stupid, to stop talking, to interject with something or other behaving jealously…

She just had Mommy all to herself.

She talked mostly about getting her own android so that she can show me all of the talking she won’t do on it and all of the apps and texting she will do on it.

She wants my phone when I turn it in for an upgrade.

I had to explain that when I turn it in for an upgrade, it will be considered an Old Lady phone and so decrepit it will be useless.  I wait until my phones are useless, with the exception of my last phone when I gave it to my eldest so she could have one when she started middle school.

She tried her darnedest to convince me to get her a cell phone and why she deserves one over her little sister.  You’ll note by the length of the rest of our conversation that it’s about much, much more than the cell phone.  It’s about sisterly relationships.  She must have been ruminating on this for quite some time and trying to figure out how to introduce her problem with her little sister in a way that Mommy would finally Get It.

“But you will give me your phone.”

“No, honey, we talked about this.  A lot.  My phone will be broken when I upgrade.”

“I am old enough.  Anna is not old enough.  I am starting 6th grade.  Anna is not responsible.”

“I already let you use my phone when you want to at home.  What happens during the school day with cell phones?”

“Electronics are NOT ALLOWED.  I would get in trouble if I use electronics.  I would use a Chromebook.  I do not want to get in trouble.  Chromebooks are for school.”

“You’re right.”

“Yes, because it is against the rules to use your electronics in class.  The teacher will TAKE IT” quick swipe of her arms through the air “AWAY!!!”

“I think you’re right.”

“I know.  Do I get your phone when you get a new one?” with a squeal.

“Not yet.  It won’t happen for a while.”

She paused here, and her face darkened.

“What’s wrong, Sweet Girl?”

“Anna thinks she is the boss of me.  She thinks she can tell me what to do.  She thinks she knows everything.”

“Like what? Tell me.”

“She is always saying I will get hurt and, um, she yells and it hurts my ears.”

“Do you get hurt if you don’t listen to her?”

“I… sometimes.”

“Do you want to know a secret about Anna?”

PENSIVE FACE WITH FURROWED BROW… she’s preparing to hear something she doesn’t like.

“Your little sister loves you with her whole heart.  She loves you more than anyone else in the world.  That means that if she thinks you’re not safe she’s going to try to protect you.”

“Hmm.” nods

“And do you want to know why it seems like she thinks she knows more than you?”

“Hmm.” glances at me

“It’s because she remembers some things better than you do sometimes; she remembers how things work a little bit better or that doing something a certain way might get you hurt.  She doesn’t want that to happen.  Right?”

“Hmm.” scowls but nods

“What she wants is to take care of you.  She enjoys that.  She likes to know that you’re safe and happy.  She doesn’t think you’re a little baby or a little kid that she has to take care of.  She just wants to make sure that her big sister doesn’t get hurt and that she’s happy.  Does that make sense?”

“Hmm.”

“She doesn’t like to fight with you.  She hates to fight with you.  It hurts her feelings when you fight.”

“She thinks she is more grown up.  She is not more responsible, I am more responsible.  I am older.  I am going in a middle school.”

“You are definitely learning to be responsible.  You’ve been helping around the house a lot more lately.  You help me when we go shopping together.  You did a great job with the grocery list yesterday.”

“Yes, I did.”

“I think you’re both learning and growing up, and I think your little sister is trying to help you grow up so that you can do it together.”

“She is bossy.  She tells me what to do.”

“Well, do you think that maybe sometimes you tell her what to do too?”

PAUSE

“I think that she’s trying to show you how to do things safely, and you know how she likes things to be ‘just right’ but you know what else? She also wants to do things WITH you so that you’re not alone.”

“Yes.”

“And you know, she just thinks about things in a different way than you do.  Your little sister’s brain works a little differently than your does so she doesn’t always understand what you’re thinking.”

“Yes, yes.”

“It might sound bossy if she thinks that she has to talk more loudly so that you’ll pay attention.  Do you understand?”

“Hmm.”  BIG PAUSE “Juliana is bossy.”

“Well… um… but she’s your big sister and you’re supposed to think she’s bossy.  She’s a leader too.  And not for nothing, honey, but when Mommy and Daddy aren’t here, she’s the boss.”

“Mom, did you hide your Kindle?”

“No honey, it’s plugged in.  Did you want to read today?”

“I don’t know.”

 

 

Oh my gosh, I love this girl.  Dear God, I love my daughters.  Love, love, love.

 

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My Sweet Girl doesn’t like talking on the phone.  Clarifying:  the boring land line which all you can do with is talk on it; the android, which you could speak into in order to have conversations except for the fact that she hates doing that.  She doesn’t like pleasantries, conversations of a fun or serious nature, and doesn’t “get” what’s so great about the entire vocalizing conversations thing.

She much prefers my android and the fun things the phone actually does.  Youtube, Kindle books, Angry Birds.  She looks forward to having her own one day so that she can have Youtube, Kindle books, and Angry Birds and text all of the friends and family that she doesn’t want to speak with.

During the second PPT of the school year I asked her team to build into the social therapies “telephone speaking skills.”  At 11 years old she doesn’t know, or care to know, how to make a phone call on the house phone or the android (or even her dad’s basic phone).  She doesn’t know, or care to know, how to answer any of the phones.  She does know how to view a text I’ve received.  She knows how to open any app that interests her.  She knows how to open up Chrome and do an internet search for My Little Ponies and Frozen and Angel Cat Sugar.  She knows how to do all of these things on my Kindle too.

I wasn’t sure how the social therapy regarding the phone skills was working because she’s still resistant to using the phone, and although I encourage her to take calls that come in for her, I don’t force her to do more than listen to the other person and be polite.  I also don’t force her to make a phone call, although I will have her listen to me make a phone call and watch what I do.  Her response every time is,

“I do not like the phone. I do not… know.”

I get it.  I do.  She has nonverbal learning disorder, and she has some anxiety regarding phone usage because, I’m guessing, telephone conversations generally don’t have an easily identifiable script.  There isn’t an expected beginning, middle, or end.  People say and ask unexpected things and since it’s not face to face, responding more quickly (as opposed to taking some time to respond) feels more urgent and anxiety inducing.

It’s ok.  But it’s still important that she knows how to do these things.  I want her to know how in case she NEEDS to make a call or respond to a call.  Emergencies could happen.  She needs to know emergency contact numbers too, but that’s been a very long difficult lesson that worries her.  We usually have a medical alert bracelet for her with ICE info on it, but the last one broke so it’s time to get a new one.  It helped her feel secure.

So you can imagine my surprise when my youngest princess called me today (as requested) with a grocery list I asked her to help me with.  I asked her if the Sweet Girl had helped make the list, offered suggestions, or anything.  She said no and then forced her sister on the phone.

I fully expected Sweet Girl to drop the phone and walk away.  She didn’t.  She didn’t because with forceful determination, my youngest daughter told her to speak up and tell Mom what she wanted for groceries.  I said “Hello” and asked her what she’d like when I went shopping after work.

Suddenly…

“Ummm… yes.  Tomato.”

“Ok. Tomato… sauce?”

“Yes.  But red soup.  Gramma calls it red soup.  It is red.”

“Great idea!”

“Mmm hmmm, yes.  Sauce.  Your sauce is better.  You need enough.”

“I need enough cans to make sauce AND soup?”

“Yes, you do.”

“Good idea.  What’s next?”

“I need hummus chips.  They are healthy.  I do not like hummus.  Hummus chips are good.”

“Uh, yeah.”

“I need black bean chips.  I do not like black beans.  I do not like texture.  Black bean hummus chips are good.”

“On the list.  Thanks, honey.”

“Chocolate pretzels… uhhh… Special K.  They have the chocolate pretzels I like.”

“Ok, thank you.  Anything else?”

“Yes. Apples.  Strawberries are good.  I do not like bananas.  Anna and Daddy like bananas, I do not like them.  You should buy them.”

“Great, I almost forgot those on the list.”

“Mmm hmmm, yes.  My pretzels, the ones I like.”

“Mustard?”

“Yes, mustard pretzels.”

“Well, should we get veggies? I think those would be healthy.”

“Yes, get veggies.”

I fully expected her to remind me that she doesn’t eat veggies or meat, only fruit and carbs and cheese, so this surprised me.  :-)

“Oh! Well what veggies would you like?”

“Rhubarb.  I miss rhu…rhubarb.  I like cauliflower.  You have to get cheesy, um, the giant one.”

“Sure! We did run out of the cauliflower.”

“We ran out of rhubarb.  Last summer.”

“That too, I hope I can find it.”

“Hmmm, yes.  You should get my fruit bars.  They are frozen.  I like strawberry.  I like lemon.  I want coconut.”

“But the coconut has milk in it.”

“Yes, you say that.  I like strawberry.”

“Do you miss yogurt?”

“I like yogurt.  Get one with chocolate.”

“You’re such a big help on this list honey.”

“Yes.  I need allergy medicine.  And nut clust… clusters.  I runned out of Lactaid.  I need chocolate Chex.”

“We ran out of a lot.  Are you hungry?”

“I don’t know.”

“Do you think the list is done?”

…..

…..

“Hi Mommy, Gracie just dropped the phone.”

 

Oh! My! Gosh! That girl kept me on the phone for 15 minutes! I complimented her when I got home from grocery shopping, and made sure she saw the healthy foods she added to the list.  She may not eat the majority of the food she PUT on that list, but she created a grocery list! Over the phone! For 15 minutes!

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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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geneThose of you who follow my blog and those of you who know me know that my Sweet Girl, my middle daughter, is Autistic.  You know that the sun rises and sets around her as it does with my other daughters.  I am not just her advocate, I am also her ally. I’ve written about raising her up to be proud of every part of herself. I’ve written about teaching her to be a self-advocate. I’ve written about experiences in public, and how various individuals have responded to her various behaviors and comments we’ve received. I’ve written about and shared news articles about Autistic teens and young adults who have had interactions with law enforcement that had no training or care about being in the presence of disabled individuals and the abuse and deaths that have occurred as a result. I’ve written about the high rates of abuse and bullying that occur among Autistic individuals and other individuals with disabilities, how it’s much higher among neuro-diverse individuals than among non-disabled and non-autistic peers. I’ve written about my disdain for Autism Speaks.

Now, I’m writing about Google and its collaboration with the project Aut10K created by Autism Speaks.  What is it, you ask?

Here.

Nature World News: Introducing The World’s Largest Autism Genome Database (click)

 

Autism Speaks announced a collaboration with data supergiant Google Cloud Platforms to make the world’s largest database of genomic sequence information on individuals with autism spectrum disorder (ASD), creating an invaluable autism research tool that can be used anywhere in the world.

Book Wright, the co-founder of Autism Speaks, announced Tuesday that the organization would be collaborating with Google to launch the Autism Speaks Ten Thousand Genomes Program (AUT10K) – a project that intends to make the world’s largest private collection of DNA samples open to the public.

We already know through reputable research for the past couple of decades that Autism Spectrum Disorders are genetically based.  Yes, it’s suspected that in some instances environmental factors can trigger or exacerbate symptoms but there’s really very little doubt among legitimate scientists that ASD is genetic, is typically hereditary, blah blah blah.  Why this seems to be news to the world, I don’t know.  Why it’s news to Autism Speaks, I really don’t know.  Except instead of Autism Speaks embracing this news in order to embrace the community and start including Autistic individuals in making decisions about themselves, in making proclamations about themselves, AUT10K is happening.

Autism Speaks is still trying to portray themselves as Autism Advocates, as allies, but this project is going to do far more harm than good.  It’s because the goal of Autism Speaks is to continue to portray autism as a tragedy, something separate from the individual, something to be cured, and as an illness.  They continue to portray the belief that autism should be cured, eliminated, reduced because autistic individuals are too “expensive” in their medical care costs and education costs.  Michael Rosanoff, associate director of public health for Autism Speaks has been quoted as saying about a cost study,

“This study shows us what we’ve all known but never had the data to support — that autism is alarmingly expensive.”

They also have an info-graphic about it.I didn’t doctor this, I just took it directly from their site (I think it was Facebook).  It’s used to illustrate the idea that Autistic individuals are a burden on society, a COST to society.  Do we understand the implications of that language?  Let’s reduce the cost, is the implication.  How do we reduce the cost? Cure, eradicate, eliminate.  Sounds an awful lot like encouraging society to endorse eugenics.  COST TO SOCIETY via Autism SpeaksEugenics is scary, people.  It’s something many have applied to their belief systems in order to explain their despicable attitudes towards individuals that have various disabilities.  Click on this link to see:  Bad Cripple: A Reply to “What Should We Do About Severely Impaired Babies”.  People really believe this stuff.

Autism Speaks launched the AUT10K project in collaboration with the Hospital for Sick Children’s Centre for Applied Genomics in Toronto.  This is a fact.  They view Autistic children, teens, and adults as sick individuals that need to be cured.  This is a repeated theme in their info-graphics and on their web site.

So, you want to know how this project will be harmful?  Check out these reliable links.  They’re not propaganda sites, they’re Autism Advocacy pages.  They’re pages run by Autistic individuals.  THEY are the people that you want to listen to.

Autism Women’s Advocacy: Dear Google, Do No Harm.

Autistic Self Advocacy Network: Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)

Google – Stop supporting Autism Speaks and AUT10K (with petition at Change.org)

As always, I could go on but today I’m not really feeling well.  I’m home sick and having trouble concentrating.

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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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I figured it out! Why my shoulder/shoulder-blade/myofascial pain has been so agonizing since I got up yesterday.  I blamed my PCP from my Monday physical.  I think she’s only partly to blame.  Well, not her directly but those terrible examination beds.

I think the real cause was getting kicked and punched all up and down my entire right side from my thigh up to my shoulder from a particular child who really, really, really didn’t want to get out of bed and then didn’t want to get off the couch to continue getting ready to go to school.  I think she hit a Fibro trigger point and some nerves.

It’s only slightly better this morning.  I can function better, since I was able to keep up with the pain management, and getting some coffee into myself this morning = happier Jessica so far.  By the time I got back from, well, all appointments yesterday I was nearing “vicious” and I hope to avoid that today.   My mood certainly didn’t improve by getting stuck in traffic for two HOURS yesterday coming back from another annual appointment that women love during which my mood had lifted somewhat when I saw that their weight scale weighed me seven pounds lighter than my PCP’s scale.

A drive that usually takes 15-20 minutes.  Two hours.  No.  I almost got smushed and shoved off the road by a pair of semi-trucks when trying to merge into the insanity from other insanity because they were at the point where, you know, I had no choice but to merge and they just wouldn’t allow ANYONE to merge.  So I ended up having to take an exit and I got lost in Hartford and ended up over the river in East Hartford but got home far faster than if I had stayed in the traffic anyway.  So thank you, asshole semis.  You saved me even though you almost killed me.  It almost made the earlier 1 hour and 45 minutes worthwhile.  I should really thank my GPS for this one.  You know, since I got lost.

I need to remind myself to stay off of Facebook on the worst of the worst days.  I usually do, but not yesterday.  :-(

Ok, so can I grow flowers if my husband let grass grow in my plant bed and we just rototill? Or do we have to lay down topsoil before planting? I have a fairy garden to put out and it wouldn’t have been a problem two summers ago.  ;-)

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