Archive for the ‘SID’ Category


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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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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Photo from GabeZimmer.com

Tongue Tied

My eldest is watching some show about a boy band, and there was a song with a catchy tune.  Gracie was half-listening while watching her little sister play a video game.  All of a sudden she comes into the living room paying more attention to the song with a horrified look on her face.

“It would not be good to be tongue tied!”

“What are you talking about, honey?”

“Having your tongue tied would hurt! It would be BAD!”

I realized that she had a mental image of someone’s tongue being tied in knots or something similar.  Maybe it was tied like a bow on a shoe.  Still, I had trouble hiding the slight smile on my face because she had misinterpreted the phrase but mainly because I was imagining what I knew she was imagining.  Then suddenly we were both giggling.  After a few minutes she was puttering in the kitchen making a snack and I could hear her giggling.

When she came back into the living room I explained what being tongue tied meant according to the song.

“So honey, when someone says they’re ‘tongue tied’ it’s a saying.”

“Oh no.”

“Yes.  It means that they’re having trouble saying what they really want to say.  Like in the song the boy wanted to tell the girl that he really likes her a lot and maybe loves her but she makes him nervous so when the words come out of this mouth they come out jumbled and garbled.  Tongue tied.”

::eye roll::

When I showed her the photo I’m using for this entry she smirked.

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Image From Rainy Day Gal

Girl Scout Samoas Cookies

We got back from Gracie’s Girl Scout meeting a little while ago. We have the meetings in one of the historical houses in the historical district, and the girls have their meetings in one room while waiting moms like me usually wait in the kitchen and listen at the doors or play on our cell phones or help with the meeting when asked (well actually, I’m there on hand in case The Girl needs me for some reason although she’s at a point recently where she would probably do better if I weren’t there).

It was a difficult meeting for her today because her SPD was in high gear. At first she came to me begging to leave, telling me,

“It is Too Loud. I need to leave now.”

I was proud of her for the fact that she self-advocated and told me very clearly what she wanted and why.  That said, I asked her to try to find a way to make it through the meeting in case Miss Girl Scout Leader had something fun planned.

She took some “emergency gum” from my purse and chose to sit at the kitchen table, listening to the meeting that took place in the next room.  When it came time to participate she would go in briefly but she still couldn’t handle the noise for long.  At times it got so loud that she would close the kitchen door leading to the meeting room to almost-shut.  When that happened,

“They are too loud.  I need to close the door so that I do not hear them.”

Again, she self-advocated for herself in action and explained her actions.  She was polite about it, but firm.  She didn’t announce it to anyone except to me.

She got to do her crafts at the kitchen table and was so happy about that.  Thank you, Miss Troop Leader, that made her day.  The girls made little cookie trays with tiny felt cookies that were turned into a pin.  The felt cookies were supposed to be chocolate chip, but since Gracie’s favorite cookie is the Samoa she turned hers into a tiny batch of Samoas.  She’s the only that did.  There was another cookie pin that was supposed to be a cute Thin Mint with a bite out of it and a phrase on it that said, “Hey who took a bite out of my Thin Mint cookie?!?” She was appalled at the thought of anyone taking a bite out of her Thin Mint and then pinning it to herself or her vest, so we didn’t cut out a bite of cookie.  Instead we pinned the little tag with a Samoa sticker on one side and her cookie sale goal on the other (100 minimum).

She kept pretending during all of this that the tiny cookie tray she made was burning hot just-from-the-oven, giggling as she did so.  On the way home, Gracie couldn’t speak but she processed the meeting.  Every now and then she giggled while holding the “hot hot hot tray.”

By the time we got home the slight rainy drizzle had turned to pellets of … frozen something … but she liked the sound so we sat in the parked car for a few minutes to listen to the quiet sound of the almost-snow pelting the car.  She sighed, gathered herself, and when I asked her if she was happy that I had “made” her stay at the meeting instead of leaving when she asked, she didn’t respond …

… but she didn’t say “no.”

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Gracie had a great night last night.  She was really internally motivated to do not only her reading homework, but the follow up writing.  Then she did some math on the Kindle Fire HD apps for an HOUR and mixed it up with the levels of difficulty and then she did the response.  She went between two different grade level apps (I’ll have to dig up the names of the apps to share them later).  Of course she started with the hard levels, then moved down and asked permission for each lower level but seriously? They’re all hard.  She was able to do many of the problems on each level.  She did a lot of the reading apps too and spent a lot of time putting words in alphabetical order and laughed at a lot of the words.  We talked about the words in the lists and she would tell me what they meant, and asked what the others meant.

 

 

 

She wanted to do it on the Kindle rather than try what was sent home to me first, and since she was so willing to do it for so long I was just so happy she was doing MATH! that I didn’t argue with her.  I want her to see math as fun and if this is how it progresses, then I want her to choose what works.  I’m just so happy right now that I’m tearing up.  I mean… Gracie willingly did math for an hour and ASKED TO DO IT and I had to stop her because she went past her bedtime.

 

 

 

If I ever questioned going back to work, just being able to afford buying that tablet made it completely worth it so that my girl could play with math and have fun.  With math.  MATH.  This is really huge for us.   This girl does everything possible to avoid math unless she’s counting out money at the store for a My Annoying Little Pony.  Or she’s counting her cookie.

 

 

 

Of course now she’s asking for an iPad of her very own.

 

 

 

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